Better Living Through Cancer

A lot of time goes by and...

2011-09-11T18:50:00.000-04:00

I posted this as an answer to a comment, but thought I should add this as a blog entry. Thanks, everyone:

Everything is well. I paused posting during my rehabilitation from radiation. The rehab period was the most difficult period for me, partly because I was at home and not interacting with other patients and clinicians (partly because the impact of treatment peaked.)

I am cancer free and now over 15 months since completion of treatment. My body has reached its new normal. My stamina is fine but well below its level before I got sick. Need a daily nap. Can exercise and do most days.

My swallowing is very good - just eat slowly and avoid super dry foods. My taste buds & sense of smell have "evolved." Food that used to be my favorite (West Asian, Italian pomodoro) are not real enjoyable. Food that I used to rarely eat (Indian, East Asian, in general spicy food, poached eggs) I now love. Not sure if it's good or bad, but I haven't found a dessert that I like. Thankfully, coffee - my prime vice - is once again delicious.

I wake each morning grateful for the day. I have no bad days; each is precious and should not be wasted. Cancer takes but gives. I learned a lot about myself, gained perspective, and had the wonderful gift of seeing friends & family gather around and help me.

Next Sunday, I'll walk the Dana-Farber Cancer Walk (opted for the five mile). Last year, I could only be a virtual walker. A year later I look back and recognize how lucky and blessed I am - with friends & family & strangers who prayed - and with the care and expertise of the clinicians and physicians at Dana Farber.

If you know anyone who is going through diagnosis or treatment for cancer - especially head & neck/throat & tongue - who needs someone to talk or correspond with, please let me know. I relied on the experience of others and am happy & fulfilled to share hand-hold whatever.

Thanks again everyone. You walked the path with me and I never felt alone.

Love,

Richard

A little while later...

2010-09-28T20:08:00.000-04:00

Sorry I haven't posted in a while. Haven't been spending much time with my computer. But there is a lot of news.

I went to Dana-Farber for my appointment with the Swallow Therapist and Nutritionist. They were surprised to find out that my stomach feeding tube had been removed. They weren't upset though. I gained four pounds in the three weeks since I stopped feeding using the tube. Generally, people lose weight. They were happy with my diet and progression of adding new foods.

My tube is healing well. While I was in seeing Swallow and Nutrition, I asked one of the nurses to check the wound. She thought it looked good. My steri-strips still haven't come off the incision where my port was removed. Ann's getting ready to pull them. Will be two weeks on Wednesday.

I get up at seven, eat breakfast, and take a nap while the food digests. A month or so ago, I couldn't ride my LifeCycle - my legs weren't strong enough to drive the wheels at low resistance. Started on the bike again last week. Am up to 24 minutes at level one. Before treatment began, I did 36 minutes at level four every morning. I am getting stronger. Plan to try 36 minutes tomorrow or the next day, then start gradually upping the level.

I've been going into work in the afternoon for the past couple of weeks. Still getting back in the swing of things.

My first followup appointment at Dana-Farber with my oncologist is next Wednesday.

Thanks everyone for your support and comfort through my illness and treatments.

Love...

Richard

Twofers!

2010-09-15T20:26:00.000-04:00

Today we went to Brigham & Women's Hospital to have my Power Port removed. It is a simple day surgery procedure. We left early; we wanted to be sure to be on time. The traffic was beyond heavy. It took (perhaps) longer than any other drive into Boston. When we got there, a half hour late, I signed in and was immediately brought down to pre-op.

I was concerned about my stomach feeding tube and potential infection (that was an issue at St. Vincent's Hospital) and told my surgical nurse. The surgeon had a simple solution. "Why don't I just take that out too while you're under sedation? I won't even charge extra!" Ann said go for it. Normally, the tube comes out without sedation or pain meds - literally yanked out and covered with a dressing. I was concerned that we were making a decision without my oncologist's approval. The surgeon paged Dr. H. who said sure go ahead and remove it. I have an appointment next Wednesday at Dana-Farber with my Nutritionist and Swallow Therapist; they were supposed to authorize the tube's removal. They work for Dr. H. so no toes are stepped on. (Don't I worry about this stuff too much?)

The procedures went smoothly and quickly. I really liked the surgeon, she is compassionate and has a sense of humor. All the nurses and anesthesiologists were nice, too.

So now I'm portless and tubeless and just a little bit sore. I have to take it easy for a few days while I heal. The port is just an incision. The tube is an open hole the size of the tube. It will scab over and close on its own. Both have dressings.

My job now is to continue to eat, not lose weight, and slowly broaden the variety of foods I eat. I'm looking forward to sandwiches, but bread (being dry) is one of the last foods I'll be able to eat. Next Wednesday, the Nutritionist and Swallow Therapist will give me more suggestions on where to go (and how) food-wise.

I went into work yesterday and spent a few hours getting my workstation updated and more, my brain updated. Getting back into the swing of things will take me a while, but I'm ready. Next week, if I'm healed sufficiently, I'll start going in for afternoons daily and work my way back into a full day's schedule.

Thanks everyone for your support and comfort. It means more than I can say.

Love...

Richard

Penne bits

2010-09-08T16:45:00.000-04:00

We went to Pizzeria Uno and my meal there was less successful. Found myself choking on penne with vegetables in a tomato sauce. Also had french fries and a little salad. (How I love salad - got to keep trying!) Last night, I ate the penne leftovers with a plan. I cut each piece of pasta into thirds and swallowed each third before trying another. It worked. I'm feeling better about eating and more confident. My swallow muscles are getting stronger and the food more diverse. Hopefully, on September 22nd, when I meet with the Nutritionist and Swallow Therapist, they'll ok my stomach feeding tube coming out. My weight has to be stable and they have to approve my diet.

My Power Port is being removed on Wednesday, September 15th (not the 13th as I wrote before) - it's simple day surgery.

I keep walking everyday. It's hard to see progress with my stamina, but I'm sure it's there.

Thanks everyone for your support and comfort. It's been a long process but I finally feel like I'm getting close to being normal again.

Love...

Richard

Real Food

2010-09-06T16:13:00.000-04:00

Happy Labor Day!

Saturday, Dan visited and we went out to El Basha, a Middle Eastern restaurant here in Worcester. I was able to eat some salad (how I've missed salad!), a entire bowl of thick lentil stew, and some french fries. It didn't go perfectly but I was able to swallow the food. This is a pick-me-up!

Tonight, we're going to Pizzeria Uno with Larry & Laura. I hope to be able to take on more salad and pasta marinara. Keep you posted.

I'm having my Power Port out on September 13th - simple day surgery. If my weight is stable on September 22nd (same as my last weigh-in), I can have my stomach feeding tube removed! I'm working (eating) hard to meet that goal.

Thanks everyone for the kind words of support and comfort. I've never felt alone through this whole journey.

Love...

Richard

Eating is the thing

2010-09-03T17:26:00.000-04:00

We are lighter knowing the cancer is gone. It's been a long road since I started treatment on February 2nd (my birthday.) My big challenge now is eating. Since September 1st, I haven't used my stomach tube to feed. On September 22nd, I see the Nutritionist and Swallow Therapist and if my weight is stable, the stomach tube will be removed. On September 13th, my Power Port (a device that sits below my chest skin and hooks into a large vein - chemo, other medications, and blood draws are accessed via the port) will be removed. It's day surgery. My understanding is the stomach tube is just yanked out in an exam room!

Eating is a challenge because food doesn't have much flavor and I need to eat about 720 calories per meal. My body is still healing and needs the extra calories. My taste buds are still coming back and I still have areas in my mouth that are raw (sensitive to acidic food/drink). I have to be patient and keep eating.

I went to the dentist yesterday and had my teeth cleaned. Head and neck radiation is hard on the teeth (well, hard on every part of the mouth, tongue, and throat) and I was concerned that the cleaning would be tough and that I would have other dental issues. The cleaning felt like any other cleaning, probably easier because my mouth has gone through a lot. Dr. Jeff came in and checked out my mouth. It's in good shape, just an old filling that needs replacement (we knew about that before cancer treatment.) Radiation weakens the teeth and I need to brush twice a day with a prescription fluoride toothpaste, let my teeth "marinate" for half hour after each brushing.

Thanks everyone for your comfort and support, for your greetings and celebration of cancer free me. You all carried me through the chemo and radiation and recovery and I was heavy.

Love...

Richard

Cancer free!

2010-09-01T11:58:00.001-04:00

We're just back from Boston and Dana-Farber Cancer Institute. My scans were good. I'm cancer free!

They stuck a rubber hose up my nose (after spraying no pain stuff) and looked around. I avoided some of the potential side effects (the extreme ones) of the radiation, but still have plenty.

Now I need to work on my eating. I'm still dependent on my stomach feeding tube. Once I can consume the necessary calories (720 per meal, three times a day) orally, they'll remove the tube.

Anyway, great news today! Thanks everyone for your good wishes, prayers, and support.

Love...

Richard

Scans

2010-08-30T15:34:00.000-04:00

We're back from Boston. It just seems like a long day. We left Worcester around 8:00 am and arrived on time at Dana Farber at 9:30 am. My first task was to visit the blood drawing room. I know all the staff there now and each greets me as they walk by. Nice to have a friendly environment especially there. Because I was having a PET Scan, I needed an IV (the nuclear material needed for the PET can damage a port) put in. Since it was a month since my port was accessed, my friend had to flush both sides of the port. I had a triple stick! Though they are really good there. My IV was in a vein no one has been able to successfully set a line in before.

I'm still nuclear (watch out small children and pregnant women) from the PET Scan. They put me in a lead lined room, opened a lead walled pass through and pulled out a fat syringe coated with (yes) lead. Then they injected me with the stuff and had me spend an hour quietly. I listened to music on my iPhone and read the latest The New Yorker short story. Brother Trucker had just finished the song "Bobby" when they came and got me. It's 90 degrees outside, but in nuclear medicine it was about 65. I laid down on the PET bench and was covered (thankfully) by a warm blankie. Then, the scan started and I went in and out of this tube for a half hour or more. Typical for me, I fell asleep during the scan. They woke me and told me I was still and they got good images.

Next, I went to CT World for a Neck Scan. I filled out their paperwork, saw a screener with long red highlights in her hair. She asked me if I had a port or an IV. I said both. The IV was active so that's the way the contrast for the CT would be administered. I went back to the waiting room, sat, and waited to be called. Tim came out and called my name and brought me into one of the CT rooms. Just like the PET machine, the CT scanner was new and state of the art (nice machines!) I bet it could tell if I were lying! Again I laid down on the bench. They took a few "pictures" then let the contrast go through my IV. My whole body felt warm which was helpful given the cold temperature in the CT room and yes, they also gave me a blankie. A few more "pictures" and I was done.

Both these tests required fasting of at least 4-6 hours. I was hungry and packing formula and my stomach tube apparatus. I asked if there was a place I could feed myself - I thought I might gross someone out in the waiting room who'd never seen a tube feed. Hey - it's just a tube that disappears in my belly and opens to the stomach. They set me up in a nice holding room and I fed. Then, we headed back to Worcester.

Now we wait until Wednesday morning when we get the results of the scans. Dr. H. feels that I am cancer free but there is no guarantee. He projects a 20% chance that I may need surgery for a maverick lymph node. We're hoping I fall into the 80% cancer free range. Say a prayer or the spiritual equivalent. Thanks.

A side note: last Friday, Mom & Dad had lunch at The Wexford House, their usual Friday routine. Dad fell on the steps after eating and broke & dislocated his arm. Wexford is conveniently located across the street from UMass Medical Center (where Ann trained and) where Dad gets his medical care. He was ferried to the E/R where they decided that surgery was risky given all of Dad's health factors. The doctors were able to manually set/reset the arm. Later on that night, Dad's blood pressure dropped and he needed a unit of blood. He was bleeding internally in the arm, blood thinners complicating the situation. He is stable and will be released soon (whatever soon is). He may have to go to rehab though he prefers to go home. We'll see. So, we have this going on, too. Never a dull moment in our family.

Thanks everyone for the support and comfort over the past week. This can be stressful, especially the waiting, and the emails have really kept me focused and made me feel the energy carrying me. It means a lot.

Love...

Richard

Big Week Coming!

2010-08-27T13:17:00.001-04:00

Next week is a big week for me. On Monday, I have a CT Neck & Head Scan and a PET Scan scheduled. Wednesday, I find out if I'm cancer free. Say a prayer or commune with your spirits for me. I've started to eat solid food though it has little taste (my taste buds sill haven't rebounded.) My weight has been rock solid on the liquid formula diet (via stomach feeding tube), but now as I cut out formula for real food, my weight is dropping. We are trying to address this. Part of the problem is that my appetite is non existant. It's my job to eat and I eat when full. If my scans are ok, getting back on a solid diet and losing the stomach tube are the major challenge.

Today is Ann & my 32nd Anniversary. We walked Institute Park this morning.

If you'd like to help in the fight against cancer, consider a donation to Dana Farber Cancer Institute. It's the research facility where I'm being treated. I've joined the Team Head & Neck (the specific department where I get my care) for The 2010 Cancer Walk. Please view my page at:

http://www.jimmyfundwalk.org/2010/fox

Thanks everyone for your support and comfort. It means more than I can express.

Love...

Richard

Learning to eat again

2010-08-24T17:39:00.000-04:00

I'm doing much better with my eating. Each meal starts with real food followed by a can of formula. Two cans of formula three times a day has maintained my weight - so steady that the Nutritionist jokes about it. So, my weight will suffer but hopefully for a short period of time only. Food still doesn't taste good and Imodium is my companion. Eating is my job. I am grateful that I can eat with little discomfort - I'm off of pain medications - and that my swallowing has improved so much. Still a ways to go. I'll be happy when my taste buds bounce back!

I take a walk everyday. Getting stronger, on a good day my walk is 45 minutes. I hope to be over an hour soon. If the weather's bad, I head over to The Greendale Mall and walk there. I think of what a showplace it once was and how rundown (empty storefronts) it is now.

My CT Scan and PET Scans are on August 30th. I get the results (am I cancer free) on September 1st. Say a prayer, please.

Thanks everyone for your support and comfort. There are days I have the blues and knowing you are out there with me helps beyond words.

Love...

Richard

Back home last night

2010-08-22T17:55:00.001-04:00

Internet is down in the rain. Checked myself out of the hospital last night. Was waiting a second day for an MRI that my DFCI oncologist didn't think was necessary. My oncologist wanted a CT brain scan which was done out of the ER and showed no problems. There was no guarantee when the MRI would have been done if I stayed another day or another day or another day. I was admitted to have the MRI, frustrating.

Feeling tired but ok. Ate well today- half bowl Cheerios for breakfast and two Eggbeaters for lunch! So, progress.

Thanks everyone for everything.

Love...

Richard

Back in the hospital again

2010-08-21T12:56:00.000-04:00

Couldn't close my right eye yesterday and my smile drooped. So went for a brain scan - nothing wrong there. We're waiting for a maybe MRI. All tests show no sign of a stroke, so likely I have a case of Bells Palsy.

The hospital is so much fun. Gotta love those three hour sleep nights!

Thursday Afternoon

2010-08-19T18:08:00.000-04:00

Time to 'fess up.

Monday, I had an appointment with my Swallow Therapist and Nutritionist, the two disciplines are close, so they are scheduled together. I was doing well. My routine of meds followed by a half hour break to do swallow exercises followed by two cans of formula (720 calories) followed by a semi-solid snack of real food was working. I was eating three snacks a day. My weight was very stable. The next step given to me was to begin with my real food and in greater quantity, then fill in with how much formula I need to fill up. They gave me a nice yellow cookbook, too, filled with easy to swallow recipes.

Tuesday morning, I started out with great enthusiasm and a cup filled with Cheerios and soy milk. To my surprise, I finished the cup. I then followed it with a can of formula. The Cheerios swelled in my stomach and soon I was lying on the couch bloated. The rest of the day, I took it very easy with food. On Wednesday, I ate most of a soy pudding first and then followed with formula, still not having confidence in larger than snack real food portions. Again, the rest of the day, I took it very easy with food.

Today, I tried a cup of Cheerios for breakfast. I finished about a third of it. I had one can of formula, but did not feel satisfied. I should be doing better.

On the plus side: I am close to being off pain meds.

My short term goal is to get out of the house more. Today, we had repair people in all day. Tomorrow, I walk the park or mall (depending on temperature) and go grocery shopping. I need specific foods based on the Monday appointment to vary my meals. I need a change of scenery.

I am angry with myself. I can do better than this. I must do better than this.

On Monday, I was feeling great. I was with the program and progressing. Today, I feel off. It and I are not as bad off as I think. This is just a tough day. I have to bounce back. I'm stronger and in less pain than anytime since radiation. Cancer recovery is very challenging. Time for me to buck up!

Thanks friends and family for your support, comfort, and love. Special thank you to Renee who drove me on Monday - I stayed awake to and from Boston - a great sign that I am getting stronger.

Love...

Richard

Sunday Morning

2010-08-15T07:31:00.000-04:00

Woke up around 5:00 am today, slept fitfully for an hour, then got up and coughed out my morning dry mouth which was a bit worse than usual. I generally sleep with my door open so air and moisture can circulate, but yesterday Lacey Dog decided it was time to play ball (with the bell in the center ball) around 4:15 am. Guess I have a choice of how to wake up. Good sleep is elusive. My best sleep is a deep nap. I don't know if it's a factor of the medication or the experience, but nighttime is often nightmare time. I did have a good walk yesterday, but don't/can't push myself to sleep with exercise.

Poor Lacey is likely senile at 4:15 am, wanting to start the day and play. Today, she sleeps - what does she dream? Dog dreams...

So I sit here at 7:13 am. Voluntary. It started as an overcast wet morning, but now the sun is sneaking out through the clouds. Guess I'll get up and see what the day brings. Hey, maybe I'll get one of those max naps!

I am wondering about Webster College/University Reunion 2010, the end of September, next month. When I started treatment, I though I was a lock to be there. Now it appears iffy. Fatigue is part of the equation, but so is eating. I don't think I want to go with a feeding tube still in place and the need to carry canned formula. I am eating semi-solid snacks three times a day which is good, better every week. But snacks of odd foods don't cover a recovering body's needs. I see the Swallow Therapist and Nutritionist tomorrow. Maybe they'll have some nice things to say.

Thanks all for your comfort and support. You brighten my day and give me balance.

Love...

Richard

Light is relative

2010-08-13T14:43:00.000-04:00

Maine was a wonderful break. We're all back at our homes. I napped most of the way on the ride to Worcester, when the city was announced I opened my eyes and everything seemed gray outside in the bright sunlight. The lake cottages are dark; that way they hold the cool air on hot days. We don't need the light away from the lake. Worcester is urban gray, such a change after days on Sebago. Funny how dark becomes light.

I'm doing my swallow exercises, eating semi-solid "meals", napping, trying to stay positive about my my solid food intake.

Thanks everyone for your words of comfort and affection. They are much appreciated.

Love...

Richard

Maine via iPhone

2010-08-10T15:24:00.000-04:00

My computer lays in it's bag. Posting via phone from Lake Sebago.

The weather is beautiful and the breezes sweet. This is a happy place for us. There are moments when the challenges of the past six months fade and life is simpler again. At lunch today, felt extraordinary happy - here with Ann, Dan, Adam; no particular reason, just blessed and grateful.

Still don't have that texting a post down yet. Thanks for your comfort and support and love. Rudy loves Maine and I love you.

Richard

Will I Have WiFi?

2010-08-06T17:20:00.000-04:00

We're off to Sebago Lake tomorrow. Charlene and Terry will be here with the animals. I will check in during the trip if I have Interent access (my guess is yes).

Thanks all and safe travels Oyra & Luis.

Ready for Maine

2010-08-05T16:53:00.000-04:00

The days are the same, getting ready for Maine. I tubed my formula, ate vanilla pudding and baby squash, did a number of errands. It was after lunch until nap time called so I napped the afternoon away. Sleep, sweet, sleep!

Roster for Maine

2010-08-02T20:56:00.000-04:00

Wind In Pines is special for our family. We called Adam to let him know what was going on and he quickly decided that he was in and ordered his plane tickets. Surprise family vacation in Maine! Rudy is also coming with - here's what he & I will be doing some of the time.

Had a great eating day yesterday as far as semi-solid foods; breakfast - baby food apple sauce, lunch - one eggbeater equivalent of one egg, dinner - soy pudding. Today, not so much, nothing went down. The nutritionist and the swallow therapist warned me about days about days like this. No bruises. Tomorrow, I'll wake up with a clean slate.

And days like today are days that I rely on you to keep me focused. Without you, I am lost. Thanks for your comfort and support.

Love...

Richard

Pattern of a day - with a travelin' twist

2010-07-31T13:59:00.000-04:00

Not much news on the health front. Still hurts when I yawn and do swallow exercises. It'll be that way for a time. I take meds through the tube (one of which makes it easier to digest and "move" the formula), wait a half hour, have my formula (yum-yum), then do swallowing exercises and east semi-solid food while the pain med is most effective. Today my lunch times match yesterday. Big whoop - I need something to find wonder in.

Ann is brilliant, ok you all know that! Yesterday, Ann realized that her vacation (week after next) and Dan's vacation (next week) matched an open week at one of the cottages at Wind-In-Pines on Sebago Lake in Maine. Dan moved his week to match and now we're going up to WIP a week from today through Thursday. The trip probably would be too much for Ann to pull off alone, but with Dan's help, we can make it a real vacation. Yum - more formula! The folks at WIP are going to do some stuff to make it even easier.

WIP (link one official site--- link two my photos) is a rustic cottage colony that the four of us (Ann, me, Dan, & Ad) have been enjoying for well over two decades. It is our place to relax. This is a surprise bonus this year!

Thanks for all your consideration and concern. I'll be carrying you up to Maine with me next week, we can revel together.

Love...

Richard

Fountain of Youth

2010-07-29T16:46:00.000-04:00

Yesterday was a productive day at Dana-Farber, a day of reassurances. I hear that the traffic into Boston wasn't too bad (the car rocks me right to sleep). First stop was a dual appointment with Nutrition and Swallow Therapy. I have been concerned that my inability to swallow more than one to three "bites" of semi-solid food at a time was marking me behind in my recovery from the radiation treatments. Not so, I was informed. My primary tumor was located on the base of my tongue - an area of muscle that pushes food down the throat. It needs more time and work before it will have recovered enough. We went and made up a list of foods to try - eating builds strength. We reviewed the exercises and set up goals for the next two weeks. Oh, and my weight has been stable (+/- 2 kilograms) since the tube went in!

Next, I had blood drawn and my ports flushed, then headed down to acupuncture for a session. The only issue with having acupuncture in the middle of the day is that it makes me very relaxed and full of desire to operate on low speed.

Side note: my hair (top of the head) growing in from chemo is soft and baby like, though brunette and gray.

Our last appointment of the day was with Dr. H. & Dr. H., medical oncology. We reviewed my general state of being, pain and medications, and eating. Once again, I asked about where I should be eating-wise and got the same answer. Patience and work, boy. Dr. H. felt that having my stomach tube removed in October was a good goal. But the tube only comes out if the food coming in though chewing and swallowing (i.e. without out the tube) for a couple of weeks is able to do so without weight loss. My CT and PET scans are now scheduled for August 30th. On September 1st, we'll meet with the two Dr. H.'s and Dr. N. (surgeon) to review the scans. The senior Dr. H. does not believe I will need surgery on my lymph nodes but they want to be certain all remnants of the cancer are gone. If there is any doubt, they will remove a node or two. (I'm hoping for no surgery, but we'll follow the science.)

Thanks everyone for being here with me. Your support is carrying me through the tough days and making me laugh during the easy ones.

Love...

Richard

Mirror daze

2010-07-27T16:49:00.000-04:00

Yesterday and today are mirror days. Three formula meals, swallow exercises, attempts to eat semi-solid/solid food mixed in with a mall walk and naps.

Tomorrow would be very much the same except it is Appointment Day at Dana-Farber. There is a very busy day planned. I get blood draw, have an acupuncture session, meet with the Swallow Therapist, the Nutritionist, and see the medical oncology team. We have lots of questions centered on my swallowing progress.

I have no problem with the physical act of swallowing. The substance being swallowed burns and/or the tongue and throat muscles hurt (they are still healing.) I know that I must learn to swallow with comfort to fully recover, I know that I can. The advice is "keep trying". Plus, I have such hankering for real food!

Today, Dan started his day in town; his first appointment was here, so he stayed overnight, short commute, extra visit for us.

Thanks everyone for your words of comfort and love. I think of you, friends and family, when the healing is most challenging. I never feel alone.

Love...

Richard

Sorry promise

2010-07-25T19:28:00.001-04:00

Friends and family, sorry I have been inconsistent in my posting to the blog. And then I get concerned messages from folks worried how I am. So here's my new promise. I will post three times a week to the blog. I'm really sorry if I've caused concern with my negligence. To say that little has been going on, or that each day is like the one before, is no excuse.

So where am I? Still having little success with semi-solid/solid foods but am being patient. Have appointments with oncol, nutritution, swallow therapy on Wednesday. Maybe I need a kick in the pants, maybe I need to continue with patience. We'll see. This is getting tiring, just formula. If I need to toughen up, so be it.

On Friday night, Ann & I joined Jesse & Susan and Pam & Mark at Jazz At Sunset, a now twenty year series held at Worcester's Ecotarium (indoor/outdoor science museum). Ann & I stayed for the first set and had a really good time. The concert was a veteran big band featuring a young jazz vocalist. The vocalist's parents are close friends of the big band players. That added a special twist to the music.

Dan's in town today. We visited my folks.

Though I have not posted as often as before, I think about you, my support network, every day. You are my anchor and your love and concern keep me centered.

Love...

Richard

Hurry up and take my time...

2010-07-07T17:20:00.001-04:00

Last week, I saw the medical oncology team, today the radiation oncologist. The message is about the same. The med_oncon folks cut my pain patch level in half (50 to 25) and placed the primary goal on eating semi-solid food (scrambled eggs, pudding, yogurt, etc.) The rad_oncon gilded the the pain patch up 12 to 37 because I've been hurting. This seems to be a good compromise. We'll drop back down to 25 in a week. Healing is a slow complicated process. I'm being sold patience and it's the only show in town. But one that makes sense.

My treatment started with curling as the background, then the general Olympics, and now the World Cup. The NBA Finals were in there somewhere, too. Sports makes an odd metronome!

My old plan is out. I'm not back at work in late-June to mid-July. The new plan is pretty similar - one day at a time - and follow the oncon rules. When I reach a milestone, act surprised! There's no book on cancer treatment recovery with set and dry times.

BeJae - our shivering bones cry out for this unrelenting heat - has always been a favorite verse. I hear your guitar echoing the truth.

I'll write when the seas are calm and I'm awake. My spirits are good.

Thanks everyone for your support and comfort. You draw the roof and floor on my days.

Love...

Richard

Update

2010-06-30T20:03:00.000-04:00

Ann's surgery on her left arm above the wrist was successful. She's home. We have a busy evening planned for us! Must get started...

Love...

Richard

Busy week to come

2010-06-29T20:22:00.000-04:00

Ann saw the orthopedic surgeon today. She'll have surgery tomorrow. A plate will placed in her left arm above the wrist. The plate will keep both arms the same length, add strength, and allow a quicker recovery.

Today, Renee drove me into Dana Farber for my acupuncture appointment. Traffic was startling light and we arrived early enough for me to make a stop down on L2 to see Maureen. Maureen is a radiation oncology nurse and would have done my discharge but our schedules got out of line. We touched base and I got the once over. My feeding tube is working well and looks good. My mouth, throat, and tongue are making steady progress. Maureen did a basic brain adjustment on me - I have to have reasonable expectations on the speed of my recovery from radiation. My swallowing will come back and my pain will lessen. I am getting closer everyday. I am getting stronger and better everyday.

On Thursday, I see Dr. H. & Dr. H. and the medical oncology team. Our friend Susan will drive us. (Currently, Ann & I are keyless per our doctors.)

Time to get ready for tomorrow. Ann appreciates the good thoughts and wishes as do I. You are wonderful.

Love...

Richard

Ann says I'm doing better

2010-06-28T16:41:00.000-04:00

so I must be doing better. This morning, she compared how I feel and act now to how I was doing just after radiation - then two weeks ago - and then a week ago. The further we go back, the more dramatic the differences. So, I can't dance and eat solid foods, can't chug water or any beverage for that matter, but I am moving forward. Albeit, (I guess) impatiently.

It's real hot & humid today so I did a LifeCycle ride instead of walking. I don't have a set in time schedule, but I am getting tasks done each day. When I can chug water or swallow solid food, I will be really happy. Have to take it one day at a time, though.

With Ann's broken hand, I'm doing all of my feeding and medicating myself. This is a sign of progress. There was a period of weeks when I couldn't keep track of meds (or time of day) and slept nearly round the clock. Don't worry - Rudy Dog cross checks me!

Thanks for your comfort and support. Now is an easy time to get lost, but you folks keep me honest and happy.

Love...

Richard

Why one day is different than another

2010-06-27T12:09:00.001-04:00

Two days - yesterday and today.

Took a 30 minute walk each day
And a nap

Ate 3/4 of an eggbeater egg yesterday
Approaching that time now

This morning Ann got a call from her Dad and they decided to meet at St.V's E/R room. Ann's Dad is having a stomach test. Ann slipped taking a short cut from one parking lot to the E/R, fell, and broke her left arm in two spots.

It's going to be a fun few weeks!

Dan is on his way in from Cambridge.

If I fall behind in blogging, well, days are different.

Love...

Richard

For once, adverts on TV for food are delectable!

2010-06-25T21:56:00.000-04:00

For so many countless reasons, it's good that Ann is here. I could have/would have slept all day today without her encouragement. This wasn't a day that tracked well.

We slept in. Apparently, at 10:00 am, with clear diction, I shouted HELP! Ann came running, her heart racing. For me, it was a dream.

Ann had an early work meeting at the house, to I made myself scarce until after noon. The end of the scarce was lying in bed napping. As I said, I was ready to sleep the day away until Ann made some gentle suggestions. Instead, I

ate an Eggbeater (equivalent 1 egg)
road the LifeCycle (6 minutes @ 1)

At 3:30 pm, Rabbi Seth stopped by and we talked about me, cancer, and recovery. Seth helps me put things in perspective. It's easy to get lost in illness, it's good to have an experienced guide. Seth thinks that a component of eating food as opposed to formula through the tube is an element of being human. People eat to live but more as a social mechanism. The dinner hour pulls us together.

I need goals and a schedule to keep me moving. Napping is too easy. Adjusted for medical appointments, each day should include slots for the LifeCycle, real meals (as opposed to formula), formula, naps (start & end times), blogging (yes, you), and general email response. And it's time to start reading again. My focus is improving.

I need to take my life back. The schedule plus real meals seem to be the keys. Once I can eat real food in quantity and variety, I believe my recovery will be rapid. Oh, how I yearn for food that has flavor, doesn't burn, and swallows easily. That will come. I can move it along by forcing that eggbeater down each day until my recovery progresses.

For once, adverts on TV for food are delectable!

Thanks all for your support and comfort. You are my fountain and anchor.

Love...

Richard

Is it bait and switch? Or just that I hear what I want to hear?

2010-06-24T18:13:00.001-04:00

I get a cancer treatment ending date and think it'll all be easy from that date on. As usual, life plays tricks on me. Finish the treatments out on an island far away from home, knowing that I will feel better but not exactly when. Still gotta get home and heal up. This is life teaching me a lesson. It's never as simple as it seems to be. But what should I concentrate on? Six-seven-months ago I was diagnosed with cancer. Today, my prognosis is excellent. I have a bad sore throat & throat & tongue, a stomach tube, and I'm still caught up in medication alley. Really, do I have room for any complaints? Look at the big picture, son!

I will get better; and probably faster than I can imagine today, or maybe slower. But I need to buck up, be a little tougher.

I write in this blog less often. That behavior mirrors my daily activity.

Much to think about.

The fan blew my cards off the long windowsill. I carefully and gently stacked them in a shoebox. I've been placing new cards on my sill and my sill is near full again. That sill is you. You never leave me unattended or alone. Thanks for the comfort and love, unending.

It's in the 80F's today! And muggy!

My short term goals remain the same: eat some semi solid food, walk 15-30 minutes a day, maintain my weight so I can get the feeding tube out.

Love...

Richard

Chicken or the egg?

2010-06-19T16:06:00.000-04:00

Yesterday, I swallowed three tablespoons of Tofutti Vanilla Frozen Soy Yogurt. Today, with my late lunch of two cans, I had half a container of Eggbeaters - about an egg, scrambled.

Progress.

This is the current step:
  Eat, no matter what it tastes like, eat.
  Spices will do you no good.
  Can't hide flavor because flavor is nil.

My taste buds will rebound. For now, it's mechanical. At least I feel hungry at times!

Thanks all, for the cards, the love, the laughs. You are my fuel and motivation.

Love...

Richard

Sprung impatience

2010-06-13T17:42:00.000-04:00

When I began cancer treatment, I had a finish date tacked into my mind. Three 21-day intensive chemo cycles, 35 radiation sessions, then a "two week" healing arc. During the roller coaster ride of the intensive chemo cycles, a two week recovery arc seemed reasonable. My mouth, neck, and throat were bouncing back and forth between pain and rapid healing.

Intensive chemo was in the books and I reached a couple weeks of happy eating that extended into early radiation. As I neared the end of radiation, the challenge ahead - the healing - loomed larger.

Now I pass my days with pain patches that make me drowsy and mostly do their job. I can't drive or read or follow complex text. I have my friends & family surrounding me with love, support, and comfort - otherwise I'd be very lonely and very blue.

I have yet to start solid food (we discuss that process at Tuesday's appointments) and must reach two weeks of maintained weight without use of feeding tube before the tube can be removed and healing accelerates. Average time is 12 weeks from last radiation treatment (June 2) until tube removal. I feel hungry and though the tube fills my nutritional needs, it's not the same.

Ok, these 2-4 weeks is a blue time. I was warned and warned about that. I AM feeling better, a little fire through the blue. I will heal and be stronger. It's just hard to see sometimes.

Thanks all for being my anchors. I rely on you in so many ways and appreciate you in every way. One day, sooner I hope, we can celebrate all this growth. Right now, your love is seeing me through.

Love...

Richard

I must be patient.

2010-06-11T19:44:00.000-04:00

Thursday's trip to Dana Farber for acupuncture was uneventful. I am enjoying the treatments.

I need to get on on a schedule to ramp my days up. I need periods for naps, exercise, eating, writing, World Cup matches, etc. A schedule serves as a disciplined framework for my day. It's too easy to sit back and develop bad habits at a time when I need to heal.

I'm feeling overall ok. My throat and mouth remain sore. At this point, I have to accept that soreness. It will fadeaway with time, most areas fairly quickly. I'm still fatigued and need extended naps. But I am ahead of where I was a week ago. It's a slow process, some days seems like I'm swimming in place.

This is a tiring process, tiring on me and on Ann. The doggies are are stressed out, too! We feel like we should be at the end (and are) of this treatment protocol. The depth of the recovery process is greater then we imagined, even after experiencing recovery signposts during chemo.

Thanks for being with me, these recovery weeks are difficult, and your support, love, and comfort help me through the bumps and grinds of this new road.

Love...

Richard

I am a patient.

2010-06-08T20:57:00.003-04:00

The last three days have been been fairly quiet. My job is seeing doctors, nurses, technicians, and medical specialists. I am a patient.

My work load has pretty light lately, most of it home based (physical therapy, tube feelings, etc.) Light doesn't mean easy, just less road time and small machines.

Tomorrow morning, Ann & I hit the road for Boston and accupucture. It's a long ride for a 45 minute treatment, but it's research and well worth it for the next person who walks in the door.

When I get busy, I'll post daily. Currently, our goal is to balance pain, constipation, and mouth/tongue recovery. It's a lot of trail and error. Yeah, fun! As fun as watching paint dry. While my schedule is interminent, I'll post every 2-3 days.

Hang in there. I'm hanging in here with you. Thanks for being you. This is the tough part, being somewhat isolated, dealing with the pain and stuff while away from Dana Farber. I really need and bank on you now. I have my stack of cards to walk through when I'm feeling blue. Sam - thanks for the lovely and whimsical gift (a note is pending but writing is a challenge.) You are my support and comfort. I need you and you are here. Thanks, don't know what else to say, but thanks! The one word elegantly carries such a weight.

Love...

Richard

Saturday June 5, 2010 - Back in Mobile with the Memphis...again

2010-06-05T19:52:00.000-04:00

I'm ok. The two weeks after my type of radiation treatment ends are the two worst weeks of the whole protocol (chemo + radiation.) Fatigue peaks as does the pain. Most often, I cannot read or write. It's almost over but not yet. Ann thinks I'm a little better each day. I'm hoping that a week from today, I'll feel weak but human - can then work on my recovery by eating soft food. That's where Jeff is.

I'm sorry I've been silent but I've felt like crap. I promise to get caught up when I can physically write.

Life is sweet. Treatment is complete for phase 1. I have three months "off" until another PET/CT Scan.

Thanks everyone for your comfort and support. I draw on your strength daily. I can't imagine getting this far without your love and help.

Love...

Richard

June 2, 2010 – Radiation 35 [treatment completed]

2010-06-02T15:03:00.000-04:00

I'm wiped out but quite happy. Radiation treatment is complete. Music today from was Particle's live soundboard of the show at The Paradise Theatre on 11/15/03 - tracks played were "Make It Real" and "Simulator". My sister Renee drove me to and from Boston and baked one of her famous chocolate chip cake for all the wonderful folks on L2. A splendid time was guaranteed for all!

I get to keep the mask, now referred to masque as it has been deactivated. It's currently living on my bedroom chair! After radiation, a neck wrap, and a few minor repairs to the old feeding tube, we did the outpatient dispatch paperwork.

I can't keep up with email and phone call flow. Please understand that I love you all, and will try my best to reply to email after the next week or two; these next two weeks are supposed to be the most tiring and painful of the entire throat, neck, and tongue cancer treatment.

Thank you all for being here with me during this tiring and difficult battle with the disease. Your love, support, and comfort carried me through these days and will continue to carry me in the days ahead. I am blessed by your grace and presence in my life. I LOVE ALL OF YOU! THANK YOU!

Love...

Richard

June 1, 2010 – Radiation 34 [1 to go] Day (s) (a)

2010-06-01T18:29:00.000-04:00

What was once a day so far away, impossible to imagine, crunched in a spreadsheet, a Where’s Waldo hidden digit, lo-ti-qued in a woman leaning against a wall in Dr. T’s office, will be here tomorrow.

I am officially short. As of approximately 10:57:59 am, I will stride from Little Bang’s haven, (LB’s bearing still sounding worn), into the trainers’ room for one more neck wrap and dream the taste of apples and know it is it not a lie but a time equation. I know the speed of post-Memorial Day mail and I want more at bats baby!

Our day at DFCI started with a flood draw and an appointment with Dr. H.. With the fresh blood numbers, H. decided that further chemo would be counter-productive. After having the port deactivated and getting a few prescriptions filled, we returned to Haed & Neck Oncology for a meeting with the Swallow Therapist.

Coming out of the Swallow Therapist office was Jeff. He looks great! We only had time for a few moments of conversation and a fist bump. Jeff said the recovery is as advertised: two more weeks of incremental side effects followed by “the day” when you wake up and realize that you feel better today than you did yesterday (that is apparently a beautiful day!)

I am fatigued. I know I have a rough two weeks head of me. But I see the recovery personally. Onward!

As for you, I held you in my dreams, sought you out in my nightmares, and understood minute-by-minute just how alive we are. Thanks for being here, for your comfort, and knowledge of us.

Love…

Richard

p.s. – Today’s music, Jeff Beck’s “Constipated Duck” from Blow By Blow and “Acsension (Edition II)” from The Major Works of John Coltrane.

May 29, 2010 – Quiet weekend

2010-05-29T20:26:00.002-04:00

Dan & Adam just left for Cambridge. Dan will drive Adam to Logan Airport über early tomorrow. Ad & Blaze dog will fly to Colorado. Our sons make us very proud. They’ve pitched in and cared for us when we really needed them, pitched and cared without being asked.

I am beat, even after sleeping most of the day. At some point over the next three weeks, I will wake up feeling better than the day before and make daily progress from there. For now, I track through the mud and snow, understanding that I will warm again.

I will post very little lightly this weekend. I need to rest and recuperate.

But I walk around with a smile that YOU put on my lips. I know I can drive through these next weeks, because I have you by my side. Your love, comfort, and support raise my spirits.

Love…

Richard

May 28, 2010 – Radiation 33 [2 to go]

2010-05-28T17:48:00.002-04:00

You knew this wouldn’t end without a challenge or two. Today, I woke up over heated and with a slight fever – fever due to the 90+ degrees exterior heat and a well-insulated house – and with diarrhea. We left early for Dana Farber so the nurses could kick my tires before radiation. I felt cooled off and better by the time we arrived in Boston. But Little Bang was sick and down - a bad bearing best my ears could tell! A machine in Brigham & Women’s Hospital mirrors each machine in Dana Farber’s radiation arsenal. Off we went, cross campus, to BWH, to meet Little Bang’s twin.

I’m still wiped out and cannot do this story justice. Let’s just say that Dana Farber gives Little Bang much nicer digs!

I forgot to list yesterday’s music – The Beatles from Rubber Soul and Revolver. Tracks played were “Here, There And Everywhere”, “For No One”, “Good Day Sunshine”, “And Your Bird Can Sing”, If I Needed Someone”, “In My Life”, “Nowhere Man”, and “Norwegian Wood”.

Today, I introduced Little Bang’s twin to Particle, playing a couple of soundboard live tracks: “Little Wing” and “The Elevator”.

I don’t feel well and will cut this short. These moments of feeling yucky are expected. So I need to focus my view real short. The next two weeks may be a real roller coaster ride.

Here’s where YOU come in. Your support and comfort keep me going no matter how I feel. Today, I am leaning on you. And I so appreciate you.

Love…

Richard

May 27, 2010 – Radiation 32 [3 to go]

2010-05-27T17:16:00.000-04:00

Yesterday’s contest question was ably handled by BeJae:

Fo-wah! Fo-wah!

I remember that Roy Bookbinder used to travel in a motor home and fish during the day at gigs on rivers and lakes. I played right after him at a venue in Oswego, NY years ago. They told stories of his guitar playing and his fishing. They took me to the edge of the great lake at midnight and I felt its power even when I couldn’t see it.

Fo-wah! Fo-Wah!

Looks like code or concrete poetry. I need t-shirts to hand out. This is a contest. There will be a prize, of that you are apprised. That, and poor grammar!

As for today:

I’m immersed in the Thursday fatigues. Ready to dive back on the couch.

Thanks all for your love, comfort, and support. I still hop up on the bench under Little Bang even knowing how I’ll feel in a week. You give me that confidence. Thanks for being you!

Love…

Richard

May 26, 2010 – Radiation 31 [4 to go], books

2010-05-26T18:05:00.002-04:00

Question of the day: What books are not safe to display on your desk at work?

My answer: Books can be very dangerous, especially when reflecting contagious ideas, but I’ve never met a book that I’d be afraid to have on my desk. Of course, I have the luxury of owning my desk for the past twenty years so it’s a bit of a cop out answer.

Your answer: (option in comments)

Today, with the music pumping (or bluesing) out “Four” (as fo-wah) at the perfect moment in time, I felt my mask being unbuckled. I held up my right hand with four separated fingers and thumb at 45-degree salute pumping! “Fo-wah!”, I croaked in my very best and loudest croak. “Fo-wah!” I waved. Today’s aptly timed musical choice was from Roy Book Binder’s Live Book… Don’t Start Me Talkin…; tracks played were “Black Dog Blues” and “Candy Man”. This is a contest. I’m not going to explain the significance of the second track and Fo-wah. That’s up to you and again in the comments section and again very optional.

We saw a burning car on the Mass Pike, on the way into Boston.

My appointments today were with the acupuncturist, nutritionist, and radiation. Aced them all.

“…I felt my mask being unbuckled…” - the lights are low during radiation and the music is LOUD (by request!) Through the mask mesh and without my glasses, I see shadows. Occasionally with Little Bang set on safety, a tech will come in and make a physical adjustment to my position, to the table, or places I cannot tell because I have not seen (glasses, mesh – see above!)

With the sessions’ length in time being inexact, it’s always a mystery as to when it’s over. Ok, ok, ok, I know the last routine, probably the whole thing, but there’s GOT to be some mystery! Like my Montreal cousins say Ey! ? I do know the length of the songs, though, and today’s session didn’t just seem to fly by, it was under fifteen minutes. Nice job, rad techs!

Thanks everyone for your support and love. I’m told that I look great for someone in his last week of radiation. That’s because of you, sweet family & friends!

Love…

Richard

May 25, 2010 – Radiation 30 [5 to go], Dreams.

2010-05-25T19:13:00.001-04:00

Little Bang’s arms elegantly dance to Rebecca Coupe Franks’ horn and the sweet purr of hydraulics. It’s the same dance for all thirty-five gigs, one I’ve decided not to learn by rote. Every time I experience it, it’s new to me. (Though to be honest, I kind of know the finale.)

Maybe my gift to L. Bang could be to learn and dance in common on my last visit (to be honest, though, Ms. Bang is too surreptitious to let that one slip by, but has a kind heart.)

Today, I spun some funky jazz, Rebecca Coupe Franks’ Check The Box, tracks played: “Life Has Just Begun”, “Thursday”, Exposure”, “Starting All Over”, and Check The Box”. If you haven’t checked out Rebecca, stretch your ears! On Box, she adds slick vocals to her mix of medium horns (trumpet, flugel) and keyboards.

5 radiation treatments to go! FIVE!

Rest of the day went off well. We’re gearing up for POST-treatment recovery. Sounds good to me!

Thanks everyone for your comfort and support. Your love and grace especially helps me on long days like today. Onward!

Love…

Richard

May 24, 2010 – Radiation 29 [6 to go] : 6 and counting

2010-05-24T19:22:00.002-04:00

Today the traffic on the Mass Pike was heavy but the traffic on L2 for Little Bang was light. The staff drummed on the dressing room door “are you ready yet?” I was #1 on the runway to my favorite ‘lil linear accelerator.

Ready-to-roll: Power Port nestled just outside of right shoulder. ConMed 20 F PEG Tube (second 18mm feed) feeding tube assembly. Aquaphor neck wrap.

Today’s music was from an old classic live album The Rolling Stones’ Get Your Ya-Ya’s Out. Tracks played were “Jumpin’ Jack Flash”, “Carol”, “Stray Cat Blues”, and “Love In Vain”. Had intended to play different tracks (“Midnight Rambler”, “Prodigal Son”) but setup time was short.

Oh well, got off the table with the call of SIX TO GO! Oh yeah!

Adam & I went to meet to Dr. T.’s (radiation oncologist) team. They examined my teeth, throat, and tongue. My pain med and calorie/protein level were checked. The skin on the directly irradiated areas of my neck was compared to last week and it was decided that an exterior Aquaphor throat dressing is now appropriate. My mouth shows the war that going on has neared its peak of collateral damage. My weight and diet numbers made Dr. T. happy. He said I’m doing all the things they’ve asked of me. We briefly reviewed the post-treatment schedule. Then, Dr. T. and the team left Ad & I alone with nurse Christina. She cleaned my neck, opened identical sterile plastic transparent pads. Christina loaded the pads with Aquaphor and form fitted them to my neck. Then, she rolled a gauze bandage around my neck covering the whole thing. It’s prime in the photo above. I will wear a couple of these a day (maybe three) until the end of treatment.

Shortly after Ad & I returned home, Rabbi Seth came for a visit. Ad had been looking forward to seeing Seth. The three of us had an insightful conversation about the nature of disease and its effects on family life. We looked at this nexus from practical, emotional, and spiritual angles. I cherish my conversations with Seth; they leave me feeling lighter and stronger.

Tomorrow is the balance of my “normal” Monday. I’ll have blood drawn, get radiation, have a rad wrap put on, see Dr. H. and the medical oncology team, and get complimentary chemo.

I’ll be a tired boy by tomorrow afternoon!

Thanks everyone for your comfort and support. This has been a very long road and I couldn’t imagine traveling it alone. Friends and family are nurturing and healing.

Love…

Richard

May 23, 2010 = Sunday + 7 and holding

2010-05-23T17:48:00.001-04:00

A weekend of sleeping and resting, days spent trying to heal the body and mind. My throat is sore on the inside and scratchy & itchy on the outside (radiation burns.) Seven radiation sessions remain, this coming Monday – Friday and the following Tuesday and Wednesday. The radiation suite is closed for Memorial Day.

Then, I heal.

Thanks everyone for staying on this trip with me. It hasn’t been easy, but we are so close to the end. We’ll walk hand in the real future. And dance together…

Love…

Richard

May 22, 2010 – Saturday

2010-05-22T17:27:00.002-04:00

Spending the day resting. My throat has been quite sore. Pam & Mark are coming by to visit tonight. I will spend this weekend catching up on sleep. I plan to ramp up the postings on Monday.

Thanks everyone for your comfort and support. As we round the final posts, knowing I am in your thoughts keeps me strong.

Love…

Richard

May 21, 2010 – Radiation 28 [7 to go] finally Friday!

2010-05-21T20:51:00.000-04:00

And I am officially exhausted. Fatigued to the max! My friend Larry drove me to Dana Farber today. I’d looked forward to the ride with a lifelong buddy, but fatigue/drugged up feeling took over. We had a lot of family “gossip” to catch up on. I slept most of the ride both ways.

I was so wiped out that I misplaced the iPhone with “my” music queued and ready for radiation. (Hid it in my sweat pants pocket!) The techies played vintage Motown for me. Nice techies.

So, thought I’d feel better today but am a little worse if anything – that’s the short view. The long view is that I have SEVEN radiation treatments – SEVEN – left. That’s cool.

I’m happy the weekend is here. I hope I do better than sleep. Adam & Dan are visiting. We’ll see. Time to be strong in a different sense. I could easily sleep all day, but must get my body in motion.

Hope you all have a wonderful weekend. Enjoy the beautiful Spring weather. Enjoy friends and family. You are my anchor and I am so thankful that you are a part of my life. I never feel alone with you.

Time to write blog: 1:28:48. (hr:min:sec)

Love…

Richard

May 20, 2010 – Radiation 27 [8 to go] – Thursday

2010-05-20T17:15:00.000-04:00

This will be another short posting. Was knocked out even more this morning than yesterday. Could barely feed myself one can. Taking a shower was against the currant. The cause is likely the combination of the upgraded pain patch and the new anti-fungal meds as we ramp up for the final EIGHT radiation treatments.

I’m finally reaching a reasonable level of coherency. Hope that by tomorrow morning enough of the chemicals will have washed themselves out of my system (or at least stopped fighting one another) that I can do my 12 minute swallow exercises in under a half hour! Then again, 45 minutes is better than falling asleep 3 minutes into the routine. Again! (As was the case today.)

I actually feel better knowing that this is not all fatigue but rather a mix of meds with some fatigue tossed in. It’s great to see the countdown at eight and to feel as well as I do (discounting the med waves.) I’m not going line dancing but I’m not miserable. I’m real grateful.

Speaking of which, today’s music was from The Grateful Dead’s Road Trips Vol. 3 No. 2 – Municipal Auditorium, Austin TX, 11/15/1971: “Beat It On Down The Line” and “Dark Star>El Paso>Dark Star”.

Yesterday’ music was from iF’s iF 2, tracks played were “Your City Is Falling”, “Sunday Sad”, and “I Couldn’t Write And Tell You”.

I won’t be answering emails until sometime this weekend and then slowly and succinctly. Libby - thanks for the beautiful watercolor card (by your hand). Ann's gonna frame it!

Thanks everyone for your support and comfort. Having you with me on this ride makes this journey seem so much shorter than I ever thought it could be. Onward!

Love…

Richard

May 19, 2010 – Radiation 26 [9 to go] – Wednesday worn

2010-05-19T20:24:00.000-04:00

Nine to go, that’s less than ten, single digits! I was effusive when I got up off the radiation table. Now, I’m just tired, real tired, working real hard to stay awake tired.

That was a fifteen-minute three-line paragraph. I’ll catch up with you later, when my eyes are open. Probably tomorrow, because I’m ready for bed after my third nap today.

Thanks all for your messages of support and comfort. Today was a really good day overall. Will try to get caught up asap.

Love…

Richard

May 18, 2010 – Radiation 25 [10 to go] – Graduation days

2010-05-18T18:11:00.000-04:00

Ten to go; I like the sound of that!

Adam & I left Worcester around 8:45 am, arrived in the lobby at Dana Farber around 10:10 am. Stopped in the lobby so I could take a Bacliphen – chemo hiccups on the rise. Went down to L2, so I could work on relaxing the hiccups away. Sequenced well, too. Three people jumped slots for me and when the waiting room was empty, my hiccups were gone. (Or rather, Jim told me they were gone and they were.) Music for today was again from Dar Williams’ Out There Live; tracks played were “The Christians And The Pagans”, “If I Wrote You”, “End Of The Summer”, and “Spring Street.”

On my way out of radiation, I ran into Jeff & Nancy. Jim’s last treatment is tomorrow! (My last is two weeks from tomorrow! Why does Wednesday suddenly sound so sweet?) We’ll keep in touch by email, but have had a month (plus) of unique bonding. Today, we compared radiation burn on the neck (oh, how motivated am I to somehow find a way to add an Aquaphor neck treatment to each day! Jeff was told that the neck heals in about two weeks), swallow therapy results, and diet/weight trending. More, we checked on how the other was feeling. Jeff is very upbeat, ready for these next steps, which do not involve a daily ride to Boston, much as we truly love and appreciate Dana Farber. I felt like my older “treatment” brother was graduating and I had to wait another “class year” for all the cool stuff at the next level. While Jeff was getting zapped for 34 of 35 times, I talked with Nancy about our families and future plans. Thursday, I’ll feel like the senior on the job. But I will officially be short.

The other main factor in Monday’s speed appointments besides weight (message received, doctors!) was pain control. Medical oncology (Dr. H.) upped me to the next level of low term pain patch. Radiation oncology (Dr. T.) suggested, when eating is difficult, to take 3 oral pain meds up from 2. This will be an ongoing “game” between pain and the meds over the next two weeks. In this case, I am the playing field, but certainly not the bored.

Thanks everyone for yours words of support. Today is an up day, so the words feel sweeter, but on the down days, they are my constant comfort and source of strength.

Love…

Richard

May 17, 2010 – Radiation 24 [11 to go] – Speed appointing

2010-05-17T21:05:00.001-04:00

Another Monday, another six-appointment day is in the books. It’s late. I’m tired. The rest of this week appears to be light (so far, just radiation Tuesday-Friday). I’ll summarize today in this posting and then write in more detail about the appointments tomorrow.

Let’s see, traffic was real light both to and from Boston. My first stop was at the blood lab for a port activation and blood draw.

Next, was a trip to radiation oncology on L2 for treatment 24, which leaves 11 to go! Thursday, I go below 10 treatments remaining! Music for today was from Dar Williams’ Out There Live; tracks played were “As Cool As I Am”, “Iowa”, and “When I Was A Boy”. After the treatment, we saw Dr. T. (radiation oncologist) and his team.

We went up the 11th floor for my appointment with the nutritionist and then with the medical oncologists, the two Dr. H.’s. Finally, we walked down a flight to the infusion room for chemotherapy.

In the next chair, was a man getting chemo boosters for brachial cancer. The goal is to keep him in remission until a better approach to dealing with his tumor is developed. Ann was running errands while his wife and daughter were getting lunch, so he and I had time to talk about cancer, how we approach treatment, and our new perspective towards life. When I was ready to leave, we wished one another best of lucks and God Bless You’s. It was an uncommon moment in life. It was a common moment at Dana Farber.

Ann & I got home around 4:00 pm. Adam & Blaze dog beat us home. We all decided we needed a nap. I napped a long time, even after everyone else was up. Ann told me I was making “strange noises” – she couldn’t describe them and may set up a tape recorder! One common thread for the day was the need to hold my weight where it is and put some more on. I’m down ~7 pounds since beginning radiation. Much of my pre- and post-nap activity involved cans of formula. Gonna do my best.

Thanks everyone for you support and comfort. I am so fortunate and so grateful to have you in my life.

Love…

Richard

May 16, 2010 – Sunday lives up to its name

2010-05-16T17:46:00.000-04:00

A short posting is appropriate for a slow sunny day. I slept in late with Rudy Dog while Ann & Lacey Dog and Pam & Samson Dog & Lily Dog went on a walk through Institute Park.

Dan arrived a little after noon. He & Ann & I watched an NCIS episode. While Ann went in for a well-deserved nap, Dan & Rudy & I visited my parents.

My Mom has successfully taught Rudy the words “CHICKEN” and “KITCHEN.” He demonstrated his increased vocabulary soon after arriving. Mom asked Rudy if they should go to the latter to get him some of the former. He bounced up and down and then sprinted ahead of her when she took her first step kitchen bound.

After we returned home, we relaxed the rest of the day. I got in a couple of naps and four cans of formula. Dan’s going to hang out with us until the evening. Adam is having a good time in Burlington. Ann suggested he stay another night since he won’t be driving to Dana Farber tomorrow. Monday will be the standard six-appointment start to the week. That’s cool; it’s all good.

Thanks everyone for your comfort and support. We’re entering “the home stretch” not only for radiation but entire initial treatment plan. Having you along on this journey makes these long days softer and bearable. So Thank You again. You are appreciated!

Love…

Richard

May 15, 2010 – Weak end stomach slip

2010-05-15T17:06:00.002-04:00

Had a real surprise this morning. Ann slipped Rudy Dog under my arm and went to take a shower. I patted Rudy and dreamed about being dizzy and throwing up, until an epiphany came about. Thus – if I didn’t make haste to the bathroom sink, I would vomit in bed. Not a nice vision, even at 9:15 am.

I haven’t vomited throughout the whole chemo / radiation experience. I haven’t needed the anti-nausea drugs. So what was going on here?

In the interest of full disclosure, I can count on one hand the number of times I’ve vomited. There were times I’d wished I could vomit, but was inept and unsuccessful. At such times as the legendary bad spicy Polish sausage in Pittsburgh, I watched friends relieve themselves of food poison using a single finger, after which I lay in a crumpled heap for days.

My last memory of vomiting before this morning was the week after one of my pre-(grammar-)school birthday parties. Renee was conducting a scientific experiment: how many plums could Richard eat? Results were inconclusive; I finished the bag and the bag finished me. I was wearing my favorite pajamas given to me by Nancy F. my favorite babysitter. Mom said the pajamas were finished, too. That bothered me the most, the PJ’s going into the trash bucket. Sigh…

At any rate, this morning I made most of the way to the bathroom sink and was able to finish there. Nice early vision of the day, right, glad you stopped by?

Let’s talk about writing a bit. I’ve been using computers professionally since 1977. I’m a touch typist. A touch typist who is off just a bit because of the treatments? The fatigue? Bottom line is that it’s getting increasingly difficult for me answer email and write these postings. At the same time, it’s really interesting to watch my brain and body misfire. Just so you know, my output is seriously down. I’ll keep trying. If one day this is all gibberish, assume I am conducting the monkey typing experiment. Also, if my email replies are slow in coming, it’s because I’m sleeping.

Sleeping is what I did most of this fine day. The nap is in and with it I am out. I’m about to do my fourth can of the day. It’s an infant like existence.

Thanks everyone for your comfort, support, and prayers.

Love…

Richard

May 14, 2010 – Radiation 23 [12 to go] – tick tick tick

2010-05-14T20:31:00.000-04:00

Adam & I had a slick ride into Boston today – no traffic! We walked into Dana Farber and even the building seemed in “holiday mode” – comparatively few people around. Did I miss something? My best guess was “nice weekend to head to The Cape, The Beaches, NH, VT, ME, or Newport”. But, uh, was there a holiday?

It was festive down in radiation oncology. Today was Caribbean Friday. The staff dressed up in colorful garb and leis. Reggae music (without lyrics) was pumped into the department. The staff danced and hula’ed while finishing the setup of Little Bang. I was locked down in place and the radiation began. At some point, I noticed that the treatment was taking longer than normal. When the techs returned, I asked and was told that they had to reboot the machine mid-treatment. Happy Holiday!

After I changed out of my johnny, one of the radiation oncology nurses checked my incision. With the care changes (Desitin, Excilon drain sponges), the wound is healing cleanly.

After Adam drove us home, he packed up the car. He & Blaze dog are spending the weekend up in Burlington, where he did his undergrad work. It’s an opportunity for him to see friends he rarely gets to see. When Ad said he was coming out to visit for three weeks, it seemed like such a long visit. Now, he’s been here over a week and the time seems to be flying by.

Speaking of flying by, as of today I have twelve (12) radiation treatments remaining. When I started radiation, I didn’t know where I’d be mentally or physically when two-thirds the way through. It’s not fun, but I’m feeling better than I ever anticipated I would.

Ann & I have a quiet weekend planned. I’m hoping to get caught up on sleep before manic Monday.

Thanks everyone for your support and comfort. I am feeling better than I ever anticipated I would because of you. You all are my anchor.

Love…

Richard

May 13, 2010 – Radiation 22 [13 to go] – zzzzzzz

2010-05-13T20:03:00.002-04:00

The pattern holds true. Monday and Tuesday, I have energy. Wednesday and Thursday, I am fatigued. Today I slept in the car. I slept traveling near. I slept traveling far. I napped lying on the couch. I napped sitting on the couch (and Adam had a whole conversation with me without realizing I was out.) The doggies snuck out my Visa card and were ordering treats and toys off the Petco website when I woke up just in time.

Ok, a bit of exaggeration but I’m slaphappy.

Today was a light day at Dana Farber. Adam drove and traffic was reasonable. I had radiation early. Today’s music was from Jim’s Big Ego’s Don’t Get Smart recording. Tracks played were “This Message”, “Ahead Of The Curve”, “Ambition”, and “Love Everybody”. Then we went upstairs to see the Swallow Therapist. She went down the set of benchmark questions and declared me on track. The ride back to Worcester was easy, or so Adam told me. I slept.

When we arrived home, I camped out on the couch and slept. I did wake to do a few cans of formula. The key was to stay conscious until the can was empty. That was my afternoon and early evening. Ad wants to watch the Celtics-Cavaliers basketball game with me. I’ll try to stay awake!

Not an exaggeration; it’s taken an hour to write this post. And my eyes are sleepy.

Thanks everyone for your support and comfort. I never feel alone on this journey.

Love…

Richard

May 12, 2010 – Radiation 21 [14 to go] – 60% in

2010-05-12T20:23:00.002-04:00

The pattern holds true. Monday and Tuesday, I have energy. Wednesday (and Thursday, uh-oh), I am fatigued. So here I am blogging when my fingers won’t type and my brain looks longingly at the couch. We’ll give it a go!

Last night, Ann wasn’t crazy about how my stomach tube looked. At the same time, I had a problem; it was clogged. I finally snaked the top (where the funnel connects) with a round toothpick and got the liquid flowing. Ann called Dr. H. the fellow and discussed the tube. Dr. H. decided that we could wait until the next day when the radiation oncology nurses could examine it. This morning, Ann thought the incision looked redder and the discharge yellowier (puss like?) I tried to use the tube, found it clogged again; only this time snaking didn’t clear it out. Ann decided that she would drive to Boston, so she could be at the examination. Adam stayed home with the doggies and took on the errands.

We left Worcester around 7:30 am. After doing my swallow exercises (now my car ride routine), I fell fast asleep. My first appointment was acupuncture at 9:30 am. We arrived in plenty of time. While I was getting needled, Ann went to the food court for a snack and the optician to look at glasses. (She was successful at finding both a snack and new frames.) My second acupuncture session was more relaxing than the first and the first was calming. It seemed I was on the table longer, but that was all perception. We got into the treatment with little conversation and time stretched out. I drifted in and out of sleep. The acupuncturist returned, eased the needles out (cannot feel them going in or out), asked me some questions related to the session, and wished me a good week. I like him; his presence alone is soothing.

Ann & I walked over to radiation oncology. I scanned in while Ann located a nurse. I was next on Little Bang, so the nurse went to set up an exam room. Today’s music was from Bob Dylan The 30th Anniversary Concert Celebration. Tracks played were “It Ain’t Me Babe” (performed by Johnny Cash & June Carter Cash), “What Was It You Wanted” (performed by Willie Nelson), “I’ll Be Your Baby Tonight” (performed by Kris Kristofferson), and “Highway 61 Revisited” (performed by Johnny Winter). I saw Jeff on the way out. He looked a little haggard but well. He has five treatments left after today and is very happy about that. We agreed that once you’re past twenty treatments, you feel like the end is in sight. For Jeff, the light at the end of the tunnel is bright!

After radiation, the nurse took us to an examining room. She looked at the tube area with Ann and didn’t think there was an issue (e.g. infection) but decided to call in one of the resident physicians. Next, she fiddled with the tube itself and showed us a couple of tricks to get the fluid flowing. While I was doing a can, the resident arrived and began to examine the tube incision. Ann pointed out her areas of concerns. He didn’t see an immediate problem, but decided to check it for the next two days now that he had a baseline for comparison. He also suggested using Desitin and pads that will cushion the tube to help the healing.

Our day at Dana Farber complete, we headed back to Worcester. In the car, I did my swallow exercises and then fell into a deep nap. When we returned home, Ann & I went back to napland. Wednesday equals fatigue. I tried to return a few emails/postings but kept falling asleep. So, I took another nap. Now, I’m yawning, spacing a bit, but managing to write.

Thanks to the folks who wrote about the current nature of this blog. It truly helps. And thanks everyone for your prayers, comfort, and support during these challenging days. You smooth out the bumps in the road and keep a smile on my face!

Love…

Richard

May 11, 2010 – Radiation 20 [15 to go] – Blog query

2010-05-11T15:00:00.001-04:00

Remember how excited you were when you turned 20? (Ok, the drinking age in Massachusetts was 18 then.) A new decade for that “age” line on forms, the end of the teenage years (like right! Whatever.) Today was radiation treatment #20. Big psychological push; I’ve made it this far and overall feel good, certainly better than anticipated (by me.) Today’s music was from Rilo Kiley’s More Adventurous. Tracks played were “Portions for Foxes”, “A Man / Me / Then Jim”, “It’s a Hit”, and “Does He Love You?”

Adam drove me in for the first time this morning. Traffic on the way in was light as far light is defined in Boston. Going home, it was a breeze. Both legs, we listened to music (Ray Wyle Hubbard’s Growl and Various Artists’ D.I.Y.: The Modern World – UK Punk II (1977-78). Mostly we talked. Ad & I have our best conversations when it’s one-on-one, no one else in the room to intrude on a flow we have going. Fun rides!

Oh, and Adam got the 25 cent tour (as opposed to the normal 10 cent tour) of the radiation control and treatment rooms. I think the combination of his warm personality and Applied Math career gave him a leg up.

I’m writing this post mid-afternoon. Lately, many of my posts are written after dinner. I’m tired, less focused, and try my best. But the posts feel formulaic: a list of the day’s treatments and appointments, a little about the commutes, and a little about home. I write with what feels like little flow. Little flow does not do Little Bang justice! I don’t know how the posts feel like on your end. Hopefully, not a yawn. In the future I resolve to, whenever possible, write earlier in the day when my mind is clearer and there are not extraneous activities (TV, supper being made and devoured by humans with functioning taste buds) going on in the background. I really care about YOU and want to give you the best I have. And I care about writing, hate being sloppy, and prefer to avoid responses like the one from Mr. Ramsey, always communicated most eloquently with his eyes, “and why did you give me this to me to read?” I think that look was the precursor of the “now I have 15 minutes I’ll never get back” line from current pop culture.

I know I write this everyday and there are a limited number of ways to express it, but I do so because I really mean it. Your support and comfort get me through the days, especially the dark hours. Today, the sun is pouring in through the living room windows and it makes me feel very happy. I think of you as the sun.

Love…

Richard

May 10, 2010 – Radiation 19 [16 to go] – Little Bang rocks!

2010-05-10T21:14:00.000-04:00

Today is busy Monday. It’s catch as many naps as you can on Saturday and Sunday to be ready for Monday, Monday. And you can’t trust that day, or at least some appointment times that day.

We woke up early. As soon as I washed up and took my meds, I set up the PEG tube and did a can. Northing like the aroma of formula in the morning (sigh… coffee.) Ann & I left for Boston around 6:30 am. It was a rugged ride on The Mass Pike, lots of stop and go and snaking traffic.

We arrived at Dana Farber a little after 8:00 am. While Ann parked the car, I went up to the 11th floor lab to have blood drawn and my port prepared for chemo. When I came out of the lab, Ann was there and we walked over to Head & Neck Oncology. With an hour before my next appointment, we sat down next to windows streaming sunlight and read.

At 9:30 am, it was time to meet with the two Dr. H.’s. I reported increased fatigue and pain, both normal for this stage of radiation with booster chemo treatment. My blood numbers continue to be good. After a mouth examination, we discussed pain control. The Percocet are less effective than they were a week ago. My mouth and tongue have large sores. The doctors decided that the best option is moving to a patch. We’ll start small and work the way up (by using liquid Percocet to supplement) until the right level of pain control is reached. With the patch, there are (of course) new side effects to consider. Oh, boy!

At 10:00 am, we took the elevator down to L2 and the radiation oncology department. I scanned in and donned a johnny. One of the nurses came out and said Dr. T. (radiation oncologist) was ready to see me. Dr. T. examined my throat and noted some potential fungal growth on the inside of my mouth and on my tongue. He started me on a med to address that. We also covered much of the same pain management conversation (as with the Dr. H.’s.)

Next stop was a visit with Little Bang, session 19 – 16 to go. Today’s music was from Barbara Kessler’s second recording Notion. Tracks played were “Jane’s Last Day”, “That Hurricane”, “At My Age”, “The Date”, and “Kathy”. Barbara is a Boston songwriter and graduate of The Old Vienna Kaffeehaus.

The day was really rocking along as we headed up to the infusion room. My slot was at 11:30 am and we were there at 11:00 am. There was confusion in infusion. The details are not relevant. Our experience at Dana Farber has been so wonderful and caring. Short story is that we had a two-hour wait, but the chemo was well delivered. While we waited, the nutritionist met with us. She was happy. My weight varied by 0.1 kilograms this week to last. We reviewed my diet for the coming week.

Our ride to Worcester was smooth and easy. I napped part of the way. Once we returned home, I napped the rest of the way. I started the day wary about my fatigue level and increasing pain. At every step, someone at Dana Farber has a proven solution to deal with the problem. The next three+ weeks aren’t going to be easy, but I feel confident that with the care at Dana Farber, it will all be manageable.

And because of you, family & friends, I feel at ease with the coming month. Your support and comfort will see me through. You are the best!

Love…

Richard

May 9, 2010 – Happy Mothers Day!

2010-05-09T16:40:00.002-04:00

Short posting for today, been napping a lot. My parents and Renee & Marshall had a lot of fun last night with Dan & Adam. This morning, the doorbell rang and beautiful flowers for Ann from the boys arrived. We went to visit my parents this afternoon. The flowers we ordered for Mom didn’t show up. There was a snafu at the florist and they will deliver (with a bonus) on Monday. We had a fine time with my parents, and then returned home. I’m going to hit the couch for another nap soon as I finish blogging.

I’m quite fatigued this weekend and my mouth-neck-throat are becoming increasingly sore. Tomorrow is a six-appointment day at Dana Farber. I’ll see all of my med friends! And likely, sleep in the car both ways!

Thanks everyone for your notes of comfort and concern. Your support helps me through these increasingly challenging days.

Love…

Richard

May 8, 2010 – Here comes the weekend

2010-05-08T17:16:00.003-04:00

Sweet Saturday slept in late and just woke from my third or fourth nap! I must need the rest!

For breakfast, I drank a Boost and then did a can of formula through the stomach tube. As I lay back bloated, I realized the opposite order would have made much more sense!

It’s fun having Dan and Ad and Blaze dog visiting. The doggies all get along, well sort of. Adam's Blaze is a black lab; she's very sweet and gentle but big, one tail swipe can clear a table. Lacey, our geriatric Bichone, is also sweet and gentle, though happily dealing with a bit in dementia. Young toy poodle Rudy is a jealous doggie! He growls when ALL the attention is not headed in his direction. Rudy will survive. Hoping these three weeks with Blaze will be a good learning experience for Rud-a-boo.

Ann’s Dad Bill & girlfriend Mary came by for lunch. We ordered lunch in from Blue Jeans, all except me. I had a bowl of Campbell Vegetarian Vegetable soup with sopped crackers. The visit was a lot of fun. Mary is very sweet and makes Bill very happy. Which in turn makes us all very happy.

Tonight, Dan & Ad will pick my Mom & Dad and meet Renee & Marshall at Romaine’s Restaurant in Northborough. It’s an early Mothers Day dinner.

Ann & I will take it easy (I feel another nap coming on) tonight. It’s a weekend of celebration.

Thanks for the cards, notes, and email messages. I never feel alone.

Love…

Richard

May 7, 2010 – Radiation 18 [17 to go] – Over halfway, Particle (ap)parent

2010-05-07T20:58:00.000-04:00

Adam & Blaze dog arrived around midnight last night. Ann picked them up at Logan Airport while Rudy Dog, Lacey Dog and I slept. It’s good to see Adam. We talk often but nothing is like flesh to flesh. Blaze has grown since we last saw her, not only physically, but also from a rambunctious puppy to a mature dog.

Got up this morning after a deep night’s sleep. Decided to go with the two can plan for breakfast. Yesterday afternoon as a test, I downed two cans of formula without a problem other than a little bloating. (It is a weird feeling when I pour water in the tube and have the feeling in my stomach of drinking water but my mouth is bone dry.) After the first can this morning, I decided that a second might not be a good idea given that I was about to go on a ninety-minute car ride. Instead, I grabbed a Boost for the road.

My sister Renee picked me up at 8:45 am. She came in and said hello to Adam, Blaze, and Ann. Then we were off to Dana Farber. Traffic was steady until we hit The Allston/Cambridge exit, which was backed up beyond the tollbooths. Renee was a student and teacher in Boston and knows that corner of the city well. She drove us around the Cambridge gridlock towards Allston and double backed along side streets to Dana Farber. We arrived in plenty of time.

First stop was radiation oncology. I saw one of the nurses and asked her to look at a rash on my upper back. After donning my johnny, she examined me. I didn’t realize that some of the radiation is shot through the back of my neck and upper back. I need to treat that area with Eucerin Aquaphor as well as the front of my neck. When it was time for me to go in, Renee was offered a quick tour of the radiation treatment room. Today’s treatment went smoothly. Music was in Renee’s honor, Particle from a live soundboard recorded at The Paradise Rock Club on 11/15/2003. Track was “Lost Child>Ed & Molly”. My nephew/Renee’s son Eric is the bass player for the band.

From radiation, we went to the Zakim Center for my first acupuncture appointment. The research coordinators gave me a survey to fill out. One of the questions was “Do you feel ill?” My gut answer was no. I may feel fatigued with a sore mouth, tongue, and throat, but I don’t feel ill.

I was brought back into an examining room and introduced to the acupuncturist. He’s Chinese and trained in his native country. We went over my cancer treatments and their effect on my pain level and swallowing. I got comfortable on the table and was blindfolded; to be sure I didn’t get a hint as to which group (sham or real) I’m in. The session was gentle and relaxing. I couldn’t feel the insertion of the needles. With Chinese music dancing in the background, I drifted on the table for a half hour. The acupuncturist returned and removed the needles, again without pain. My next session will be in about a week. First impression is very positive.

Renee and I next went over to The Longwood Grille for lunch. My Longwood meal is becoming like Garp’s name. The Tuna Salad Grilled is now down to a couple scoops of tuna salad and French fries! The fries will be next to go. Renee had one of the Longwood’s featured salads.

My last appointment was at Brigham & Women’s Hospital Day Surgery, the follow up from last week’s surgery. The nurse practitioner examined the tube placement, turned it 360 degrees, and cleaned the site. She pronounced me ready and able for non-contact sports, i.e. I can ride my LifeCycle again.

Renee and I walked from Brigham & Women’s to Dana Farber. It was a beautiful day, warm and lots of sunshine. We made our way to the car, and began the drive to Worcester. Our day together was a lot of fun. With time for uninterrupted conversation, we laughed a lot, pulled out vintage memories, and got caught up on the details of our children’s’ lives. It’s a real gift to share the day just with my sister. I feel very grateful for today.

When we arrived back at the house, we all visited a bit and then I went in for a long nap. I had good reason to be tired; it was a busy day. But I think the radiation is catching up with me and I’ll need to be conscious of my rest and sleep time.

Dan arrived after supper. The four of us are together for the weekend! Ann’s Dad & Mary are visiting us tomorrow and Sunday; we’ll head over to my parents’ condo.

Thanks everyone for cards and emails of support. As I enter the stretch run of radiation, your love, comfort, and support are an anchor for me. This is tough part of the treatments, but the end is in sight! I’m over halfway through radiation; raise a toast!

Love…

Richard

May 6, 2010 – Radiation 17 [18 to go] – Counting…

2010-05-06T17:43:00.000-04:00

Ann & I set off for Boston at 7:30 am today. We often have the fifteen-minute debate (should we leave at 7:45 am?), but end up allowing the extra time. Today, we needed it all. Don’t know why, but we hit two big snarls on the Mass Pike.

The first appointment of the day was with Maria, the Speech & Swallow Therapist. We went over my swallow exercise program and current food/liquid intake. Breakfast has been a challenging meal for me this week. I wake up, take pain meds, have a Boost, and wait forty-five minutes before eating. It’s still hard to eat over the night’s dry mouth and general soreness in my mouth and on my tongue. And while fighting off early morning fatigue. Maria suggested that instead of eating orally, I just “do a couple of cans” of formula through the tube and let my body wake gradually. I think that’s an excellent plan.

Next, we went down to L2 for my radiation treatment. We were about a half-hour early and someone must have been late. They took me in immediately. I asked the techs if they liked Austin Blues and they said heck yes, so today’s music was from Sue Foley’s Walk In The Sun, tracks played were: “Try To Understand’, “Give It To Me”, “Walk In The Sun”, “The Snake”, and “Lover’s Call”.

My appointments finished early, we decided to stop and do a few errands on the way home. I napped most of the way into Boston and napped most of the way back, too. Thursdays are high fatigue days. Don’t know if it’s the sequencing of chemo and radiation, the schedule of treatments, or what. Thursday, I crash.

Ann watched me sleeping on the ride home cut our stops to CVS, a quick lunch at El Basha (lentil soup still smooth), and Petco where she picked up food for Blaze, Adam’s Labrador Retriever.

And yes, that’s the big news. Adam and Blaze arrive from Colorado tonight! Ad can work from here and drive me into Dana Farber daily. That takes a lot of pressure off of us, especially off Ann’s schedule.

Renee is driving me tomorrow. I have radiation, acupuncture, and the follow up for my tube surgery.

I’m afraid I’m fading. I took a three-hour nap this afternoon, but my body wants me to lie down on the couch again. I will listen to my body.

Thanks for your comfort and support. You all light the way for me on this journey.

Love…

Richard

May 5, 2010 – Radiation 16 [19 to go] – Less than 20.

2010-05-05T18:08:00.002-04:00

I seem to be in a pattern. Monday and Tuesday, I have plenty of energy. Monday makes sense despite the six appointments; it is after the weekend. Tuesday, perhaps I’m still feeling the jolt from Monday’s pre-chemo steroids. Wednesday and Thursday, I am fatigued even with a light Dana Farber schedule on those days (or maybe because of the light schedule?) Friday, I’m tired, but shake it off. It’s the last day of the week. “It’s Friday and the streets are ours.” – old Boston 1980’s Punk/New Wave proverb. Today is a tired day, but hey: I have less than twenty radiation treatments left!

Ann & I left the house at 8:45 am. We drove into the sunshine, a beautiful Massachusetts Spring morning. Traffic was relatively light until we hit the Cambridge/Allston exit off I-90, but that’s a short tie up. We arrived early for my radiation treatment. I scanned in, donned my johnny, and we pulled out our books. While we were waiting, one of Dr. T.’s nurses came over and checked in on my progress. Things are stable for now, but it’s good to know the staff is watching.

My radiation treatment went smoothly. Today’s music was from Annie Gallup’s Backbone, tracks played were: “Fight The Devil”, “Max”, “John Llewellyn”, “The Girl With Flyaway Hair”, “April 22nd, Somerville, Massachusetts”, and “The Truth About Disguise” [perfect mask song!] Jim, the head radiation tech, asked me who the artist was, so I introduced him to Annie.

In the waiting room, I said hello to Jeff before he headed in for his treatment. Dealing with the side effects is getting to him, though he’s trying not to show it. But Jeff is short. His last treatment is two weeks from today! When he finishes, I’ll have nine left. We all move forward, from newbie to seasoned (Little Bang helps.)

We had an easy ride back to Worcester. When we arrived home, Ann took a quick nap while I caught up on phone calls. An hour later, I laid down on the couch to nap just as Ann was getting up to go to work. I had a long nap, woke to two doggies imploring me to feed them supper. Fed the pups, then took them out for a run (while I watched. Running is a ways off for me.) Got together the PEG tube supplies and fed myself a can of formula. Yum! It’s kind of weird to be drinking water through my mouth while for the formula is draining through the tube directly into my stomach. The plan is to take it really easy tonight and get a lot of sleep. Tomorrow night, Adam arrives from Colorado. He’ll do the bulk of the driving to Dana Farber over the next three weeks; take a lot of the pressure off of Ann. Ad can do his research from here. The Internet makes the world smaller.

Thanks everyone for your emails. I’m behind on replies, but working on it. Thanks for all your comfort and support. Walking this road is much easier when not walking alone.

Love…

Richard

May 4, 2010 – Radiation 15 [20 to go] – Riding with Lora

2010-05-04T19:34:00.000-04:00

This morning I woke up with my first case of “Sahara Desert” mouth. The radiation nurses warned me of this wake up phenomena. Beyond normal dry mouth (and I sip water every nighttime pee break, about every ninety minutes) large areas of my mouth were coated with a thick sludge. I gargled water, no luck. I ramped it up to Biotene mouthwash, better, broke up a lot off sludge, but ouch! More water, then time for a Vanilla Boost. We are progressing with radiation therapy. Do the math; I’ll have less than twenty to go after tomorrow’s session, but that also means the side effects are picking up. I saw Jeff today as we passed each other between consecutive slots on Little Bang. He gave me thumbs up and wished me well. His voice was hoarse but his attitude great as he asked how my tube was feeling. The Dana Farber Club!

Our friend Lora picked me up at 8:45 am. We had an easy ride in. Somewhere past Natick, I noted the lack of traffic and Lora said don’t jinx us. We came around the next corner and yup; the backup from the I-90/I-95 interchange slowed us right down. I should have kept my mouth shut. Nonetheless, the tie up was minor and we arrived at Dana Farber in plenty of time.

Riding with Lora was a lot of fun. Conversation never hits a lull with good friends. We have a plethora of topics: adult children, aging parents, why children & parents won’t do as we suggest (isn’t the sandwich generation always right? ask me in 20 years or so), our common friends, and three+ decades of history and stories. Yes, Cousin Betsy, we talked about you. Were your ears ringing? (Not to worry, all we said was good and true.) Larry & Lora have two daughters; we have two sons. Both older children live in the Boston area and have established professional careers. Both younger children are Ph.D. candidates and live far from home; travel is part of their world. Mostly, Lora and I had a lot of laughs. The funny stories won out, but we touched the serious ones, too.

Today was a “light” day at Dana Farber. After my radiation treatment, we met with two Research Coordinators to sign me for the acupuncture trial. A doctor’s signature was also required. Dr. H., my oncologist and team leader walked in the room. He gave his view of the study (a positive one) and we signed the paperwork. It’s always a treat to see Dr. H.; he exudes competence and confidence. The Research Coordinators brought us down to the Zakim Center, the home of acupuncture and similar therapies. We scheduled the twelve sessions, which start this Friday and conclude in September. I may be in a “sham” (control) group or may be getting the real therapy. If I’m in the sham group, I’ll get six certificates, each good for a treatment at the Zakim Center. I won’t know which group I’m in until after the twelfth session.

Lora and I left Dana Farber for Worcester, but made a stop at Whole Foods in Newton. There isn’t a Whole Foods near Worcester; sadly our old mill town doesn’t attract new businesses especially diverse food markets. So going to Whole Foods for me is like going to Disney Land with even better eats! We meandered through the market, department by department, selecting soup & sandwiches for lunch, freshly prepared foods (an incredibly varied and creative assortment), and items to cook later that are not available in regular food supermarkets. Lora and I have a similar shopping pace. We like to stop and look at everything, take our time. And we did! We ate our lunch, got back in the car, and headed west down the Mass Pike. Lora, thanks for the ride and the great conversation and shopping.

When I got home, I greeted the doggies and put away the groceries. After that, I spent the rest of the afternoon doing chores and paying bills. Tomorrow will be a light day at Dana Farber. The only appointment is radiation. It will be good to have some quiet time and maybe nap time when we get home.

Thanks everyone for all the greetings and good wishes. Your comfort and support makes my days easier and serve as a font for strength.

Love…

Richard

May 3, 2010 – Radiation 14 [21 to go] – 40% there!

2010-05-03T20:30:00.000-04:00

Ann & I are exhausted. It was a long day. We got up at 7:00 am and left the house at 8:30 am. Traffic on the Mass Pike was frenetic. We pulled into Dana Farber around 10:00 am, in time for my 10:15 am blood draw. Ann dropped me off at the entrance and I zipped up to the 11th floor and registered. I got my Dana Farber wristband for the day and sat down to wait. Just after Ann arrived from parking the car, a nurse called my name. The nurse accessed my port, drew blood, and set up the tubing for chemo.

Our next stop was radiation oncology. We went down to L2. I scanned in and donned a johnny. The older gentleman who has the slot before me walked into the waiting room and held up a single finger (index) to me. He finished his thirty-fourth session and has one more to go. He paused to ask me how the tube insertion went which I appreciated. The radiation tech called me in and got me set up for my radiation session. Music for today was from one of my favorite jazz concert recordings, The Carla Bley Band’s Live! Tracks played were “Blunt Object”, “The Lord Is Listenin’ To Ya, Hallelujah!”, and “Time And Us”. When my session finished, I heard and felt the mask being unlocked. When the mask cleared my vision, I saw it was Jim, the head tech doing the unlocking. Jim is generally in the control room at this point in the action. He is also the largest and strongest tech. Putting his hand under my back, he gently raised me off the table. With my tube still new and healing, sitting up from the table by myself would have been painful. The radiation techs are very aware of tube insertions and I think Jim was there because he could get me off the table smoothly. It’s the little things that count and Dana Farber racks them up.

I returned to the waiting room and saw Jeff. As he was being called in for his session, he asked me how the tube surgery went. It’s like I said last week, being a Dana Farber patient is like being a member of a club. I doffed my johnny and Dr. T.’s (the radiation oncologist) nurse came to bring us to our next appointment.

Dr. T. checked out my tube, looked at my mouth, tongue, and throat, and asked the standard questions. At this point, my mouth, tongue, throat, and swallowing muscles are incrementally degrading with each treatment. Dr. T. told me what to expect in the near future and discussed long-term pain control strategies.

Our next stop was back on the 11th floor for my checkup with the oncology team. When my vitals were taken, they noted that I lost three pounds. I know when that happened, Saturday through the wee hours of Sunday. Lesson learned: I will never have anesthesia again when constipated. My oncologist and team leader, Dr. H., was away, so I saw the other Dr. H. (hematology/oncology fellow) and another attending oncologist Dr. L.. My blood numbers were reviewed and it was a positive report. My red blood cell count is stable and my protein level is significantly higher reflecting the changes in my diet. Everyone took a turn poking and prodding my tongue, mouth, and neck. Again, we talked options for pain management as we move forward. Dr. H. gave us a new factoid. The side effects from radiation will continue incrementally for a week following my last treatment. But, the healing process will start soon after and progress at a faster rate.

From the 11th floor, we walked down a flight of stairs to the 10th floor and the infusion room, stop number five. I registered there and was told that infusion was running behind. I had a noon slot but it was more like 2:15 pm before my chemo started.

Brooke, the nutritionist came by with the idea of doing my tube instruction at the same time as chemo. Since we had a delay, she found an examining room and we worked there. Brooke looked at my tube assembly and asked me how it felt. I told her that the discomfort was minor; but when Ann cleans the crusting around the plug where the tube enters the abdomen, there is one spot that spasms and makes my leg and foot bounce up and down. At first, I tried to suppress the bouncing, but that made the cleaning more uncomfortable. So, now I bounce. The dogs think it’s pretty funny, but they understand. Brooke had me unhook the tube’s nozzle from the Velcro holder and uncap the nozzle. She then inserted a 60 ml syringe (which is used as a funnel) into the nozzle. Next, I released the clamp that sits halfway on the tube. We were unlocked and primed. Brooke filled the syringe with room temperature bottled water to flush the tube (whenever I eat, gravity pulls stomach contents into the tube.) Then she opened up a can of formula (unflavored ‘cause it’s going straight into the tummy, no tasting involved!) and filled the syringe. The formula is thick and I had to raise the tube to get it to drain. It’s fun to watch the chocolate color seep through the tube. The last step was to flush the tube with water. I found that if I hold the nozzle high and keep my mouth shut, the water easily drains below the clamp and I can secure the clamp without any trouble. Brooke’s plan is for me to ingest one can of formula a day while I’m still eating orally. Two cans of formula equate to a meal, so as my oral food intake decreases I add more formula. Brooke checked in with the infusion room. There was still a delay, so she brought us out to the waiting room.

Around 1:45 pm, my chemo nurse came out and apologized for the long wait. Mondays are always busy, being after the weekend, and midday is the time in most demand. I was brought to a bed, not a chair, a first. All the chairs were full. It turned out that the bed was handy for napping! Around 2:15 pm, she returned with my fresh brewed Carboplatin and hooked me up. I read a bit until I began to drift. Put the Kindle down, closed my eyes, and slipped into a nap. Before I knew it, the IV machine began to beep. It made an excellent alarm clock.

Ann & I hit the road around 3:15 pm. We ran into pockets of heavy rain, otherwise the ride was ok. The doggies were real glad to see us. Dinnertime is 3:30 pm and we were forty-five minutes late. Tomorrow, Lora is driving me to Dana Farber; I’m looking forward to a fun trip. It’s an easy day, a radiation treatment followed by a trip to the 11th floor to sign the papers needed to join the acupuncture research.

Thanks everyone for all you do to make my cancer treatment gentler. Your support and comfort is a cherished gift.

Love…

Richard

May 2, 2010 – Breathing

2010-05-02T16:56:00.003-04:00

Last night was an up and down night, up and down every hour to hour and a half. I slept well in between. Around 5:00 am, the constipation seemed to have resolved itself. All the meds were out of my system and my GI tract calmed down. After spending Saturday and early Sunday sorting out my digestive system, morning was welcome.

I had a breakfast of Boost and Cheerios with blueberries and vanilla soymilk. While I ate, Ann reviewed the post-op instructions on cleaning the tube incision. I finished breakfast and lay down on the couch. Ann removed the dressing and cleaned the incision site with a Q-tip. It didn’t hurt, but as Ann circled the site, she hit something that triggered a stomach muscle to spasm. That wasn’t fun but was pretty funny. The incision site is supposed to be left open to the air, so I’m going shirtless. Good thing the sun is out and temperature is 83F.

Dan arrived a little after noon and boosted my spirits just by being here. We sat around talking and watching “Scrubs” on TV.

I started getting hungry (good sign) and Ann made me scrambled Egg Beaters. Dan made himself a sandwich. My parents called and asked about visiting. They arrived soon after to the delight of the doggies, and the humans. We watched the Red Sox – Orioles baseball game as we talked. Mom & Dad admired my tube. I currently have two appliances in place (port is the other) and lead the family in that category. My parents left and Ann & Dan & I watched via DVR episodes of “Modern Family” and “Big Bang Theory.” I was hungry, again, and had a bowl of Campbell’s Vegetarian Vegetable soup. When we were kids, I think there were more letters in the soup. Oh well.

As bad as I felt last night, today I feel good. In a while, I’ll take a shower, first shower since the surgery. I have to be clean for all of Monday’s poking and prodding. We have a busy schedule: blood draw, radiation treatment, appointment with the radiation oncologist, appointment with the oncologist/team leader, chemotherapy, and the nutritionist. The nutritionist will teach us how to flush the tube and feed formula. I can eat and talk at the same time!

Thanks everyone for your support and comfort. I look at my windowsills covered with cards and my Alien mailbox full, and feel you all here with me.

Love…

Richard

May 1, 2010 – Pause…

2010-05-01T22:12:00.000-04:00

A short posting for today. Last night, I discovered positions in bed where the incision didn’t hurt. Between the anesthesia and the busy Friday, I slept well. Then, I napped most of the day. The incision is much less painful now. However, I was quite constipated all day due to the pain meds and anesthesia (my best guess.) The constipation caused me the most discomfort. When I imagined this weekend, I saw myself working to deal with the incision’s pain. Big surprise! It’s my lower GI that had all my attention.

I’m feeling better now. Drank a Boost and will have supper soon. Have eaten very little today. This whole treatment process has many lessons. Just when I think the tube would dominate the weekend, my body turns around and surprises me. Ok, not all surprises are fun!

Dan’s coming to visit tomorrow and we hope visit my parents. It’s a short ride to their condo and a short ride will get me ready for the longer rides on Monday and the six appointments at Dana Farber.

Thanks everyone for your love and support. Knowing you are here with me was a great comfort today.

Love…

Richard

April 30, 2010 – Radiation 13 [22 to go] – Tubular!

2010-04-30T18:44:00.006-04:00

I’m tubular. I can eat and talk at the same time. I’m also passing out from the lingering anesthesia as I type. Here are a couple of tube photos:

The folded white piece on top of two bandages is a Velcro holder. It keeps the tube in place when not in use. The clear piece with a cap above the yellow connector is where the formula (via the syringe funnel) is poured.

Over on the left in the second photo is the Velcro holder. In photo one, we saw one end of the tubing going to where the formula is poured. Here we see the other end of the tubing going through a white clasp and then into my stomach through a hole anchored by two bandages.

Ann & arrived at Dana Farber around 7:45 am. While she parked the car, I went down to radiation oncology and scanned in. I was called in, locked down with the mask, and ready to go when the mask was unsnapped. The table was malfunctioning; the techs couldn’t control its height. They sent me back to the waiting room while Little Bang and the table had a heated conversation. After a five-minute wait, I was back on the table, mask locked and loaded. “Time to rock ‘n’ roll” I told the tech. “Time” she replied. Today’s music was from Squeeze’s Argy Bargy. Tracks played: “Pulling Mussels (From The Shell)”, “Another Nail In My Heart”, “Separate Beds”, “Misadventure”, “If I Didn’t Love You”, and “I Think I’m Go Go”.

After radiation, we walked over to Brigham & Women’s Hospital and checked in at Day Surgery. The whole process was very smooth. The pre-op staff checked all my details, physical and personal, and moved down to the prep ward. I changed into a johnny and was covered with hot blankets (yes!) Three people ran me through a checklist of questions. My port was activated. The anesthesiologist and surgeon introduced themselves and joked around. I was wheeled down to the operating room, given some happy juice through the IV, told a joke, heard a joke, and woke up in recovery.

The recovery staff was friendly and helpful. After checking my bandage, incision, and vitals, I was moved to a release area. We (or rather Ann, I wasn’t about to remember anything!) were given after surgery care instructions and information on a surgical follow up. We left Day Surgery with me on foot and walked over to the Dana Farber patient garage. Our ride home was easy, at least for me. I fell fast asleep as soon as we hit Storrow Drive and woke on our driveway at home.

I’m now over 37% through radiation, will be over halfway next Friday. My tube is in. These benchmarks underline my progress. I’m sitting in Ann’s recliner, currently the most comfortable seat for me. Getting in or out of bed or off the couch does seriously sting. I figure this will ease over the weekend. Some time next week, the surgeon will peel off a rubber washer (sits below the tube nexus) and move the tube about an inch to relieve the pressure and discomfort. I feel good and my attitude is very up, very Bring It On! I do understand that the second half or radiation treatments will be much harder than the first. But every treatment brings me that much closer to the finish.

Thanks everyone for your words of comfort and support. I carry you with me, especially on days like today, when the challenges are greater. I’m so grateful for all y’all.

Love…

Richard

April 29, 2010 – Radiation 12 [23 to go] – riding with Jesse

2010-04-29T17:29:00.000-04:00

It’s a sunny but windy day in Eastern Massachusetts, good traveling weather. Jesse picked me up at 7:15 am; we wanted to allow some extra time in case the traffic on The Mass Pike got dicey. The ride in was straight into the sun. Jesse packed some jazz, a Steven Colbert audio book, and a few CD’s for the trip. We really didn’t need much diversion. When you’ve known someone as long as I’ve known Jesse, there is a deep well of conversation open and waiting. We talked about our families, especially what the kids, now adults, are doing; and how quickly that transition from toddlers to adults swept by. Jesse & I are small business owners in Worcester. Discussing the challenges of operating a company in this city in this economy always occupies us. This year brings added complications and with them, a search for new solutions. Wherever our conversation leads us, we return to family. It’s the ultimate destination. Qvelling is good for the soul!

We arrived at Dana Farber with plenty of time to spare. First stop was an appointment with Nutrition, part of the preparation for tomorrow’s feeding tube insertion surgery. The nutritionist reviewed my current food intake and approved of it. She talked about the transitions I may go through over the next month due to the side affects of radiation. Some patients are able to eat sufficient amounts of soft food and use the tube only for booster calories and protein snacks. Others have more pain and difficulty swallowing and the tube becomes the primary source of nutrition. I will meet with the nutritionist weekly both for training on using the tube and for adjusting the mix of my diet. Some the meetings will also include the Speech & Swallow Therapist; the two fields have a large overlap.

We had a little spare time before radiation, so we went up to Head & Neck Oncology to straighten out a snafu in appointments. With that resolved, we took an elevator ride from the 11th floor to L2, land of nuclear medicine. I scanned in and we headed over to Little Bang’s waiting room. It was empty. I changed into a johnny and checked the waiting room’s monitor. Little Bang, on time at scan in, was now in a 15-minute delay. An older gentleman came into the waiting room, dressed for radiation. He has the slot before me and is the veteran of our group. After today, he has three treatments left. We have brief conversations and his sense of humor shines, but it’s obvious that his throat is painful. He wished me well on the tube insertion. I congratulated him on being short. After he went into radiation treatment room, Jeff arrived. Today was radiation #21 for him, #12 for me. We talked tube a bit. Jeff asked me if I am a stomach sleeper. I replied, no a back sleeper. He smiled and said one of the worst parts of the tube was changing from his regular chest down sleeping position (which pushes on the tube) to his back. Soon, my name was called for radiation. I passed the older gentleman and wished him luck. He wished me the same on my tube surgery. I noticed the raw burn marks on his neck. As I rounded the corner to the radiation treatment room, I heard Jeff congratulating him.

My radiation treatment followed its now familiar rhythm. Today’s music was from one of Boston’s seminal New Wave bands during the punked out period of 1977-1982: Robin Lane & The Chartbusters. From their self-titled first recording, I played “Don’t Cry”, “When Things Go Wrong”, “Without You”, “Why Do You Tell Lies”, and “I Don’t Want To Know”. Ann & I used to catch Robin and the boys live often, before and during the early days of our marriage. Those early 1980’s styles were rad. The techs liked the tunes, got them dancing a bit!

On my way back to the waiting room, I passed Jeff (he has the slot after me) and he patted me on the back and wished me good luck with the tube. I wished him the same on his treatment today. We’re members of an exclusive club and understand what lurks in the spaces between our words. The waiting room was full on my return. It ebbs and flows.

Jesse & I left Dana Farber and headed around the corner to where his nephew Mark lives. Jesse & Susan are going to take care of Mark & Jen’s dog Beso for the next week and we were picking the pup up. We decided to have lunch before driving back to Worcester. Mark recommended Charley’s Diner, a neighborhood landmark that opened in the 1920’s. (I wonder if my grandparents ever ate there?) Charley’s was great. The food was excellent, the portions large, and the décor and ambience were from another era. After lunch, we packed Beso into the car and drove west through light traffic.

Jesse & I had time for more conversation on the ride home, amid my swallow exercises (I checked out other cars – no one noticed the odd movements of my face. I was disappointed!) Beso was quiet for the entire ride. Good doggie!

This morning, I was a bit apprehensive about the tube surgery. Kind of odd; the thought of it hasn’t bothered me. Go into day surgery, take a nap, wake with a tube. Seeing Jeff and the DFCI staff today eased my apprehension. Maybe today, I’m being a bit normal.

Please note: if I'm coherent after the anesthesia, I'll post to the blog tomorrow. It's possible that I'll just sleep all day and night. So, please don't worry if I miss a day. I will try to at least get a few words up here.

Thanks all for your support and comfort. Having you along with me on this journey makes the path clearer and the footholds softer.

Love…

Richard

April 28, 2010 – Radiation 11 [24 to go] – for Tx

2010-04-28T17:48:00.002-04:00

I think I'm into my radiation pattern: Monday when I get chemo with the greenie steroids and Tuesday, I have plenty of energy (it's also after a weekend's rest.) Wednesday to Friday, fatigue sets in and all I want to do is nap, nap, nap. This weekend I'll be sleepy and maybe a little sore after having the feeding tube surgery on Friday. It's an easy procedure; I take a "nap" and wake up with a tube. Simple, huh?

Jeff, who is going through the same treatment protocol for throat cancer, had his 20th radiation treatment today. He's a good model for me. We both don't smoke or drink, love to exercise, and eat healthy. Yeah, he's 40 and I'm 57, but we have a lot in common. His attitude mirrors mine. Bring It On! So, I ask him how he feels and I get an upbeat answer. He also tells me about some stuff he's hit that I will hit soon. For instance, the tube will be sore the first week until the surgeon pulls it out and manipulates it. After that, it’ll be much more comfortable. I feel fortunate to have my radiation treatment back-to-back with Jeff.

Ann & I left Worcester around 9:00 am for my 10:40 am slot. I went to sleep early last night and my alarm went off at 7:30 am. Took me almost four minutes (one song on the CD I have cued as a wake up tune) to drag myself out of bed. Big shock, I napped on the rides to and from Boston! Radiation treatment went fine. Today’s music was from Ray Wylie Hubbard’s Growl – tracks played were “Rooster”, “Screw You, We’re from Texas” (the special request for Little Bang, my Novalis Tx), “Rock ‘n’ Roll Is A Vicious Game”, and “Stolen Horses”. I think the techs like Texas.

When we returned home, we had lunch. Ann left for work and I got some errands done and answered a few emails. Rudy Dog & I took a nap, or tried to. Lacey kept whining for dinner – an hour early! Rudy and I were not amused.

Last night, I finished Mariantes’ Matterhorn. Thought the author found a satisfactory ending for the book just when he seemed to have written himself into a corner. Started (still on my Kindle) Seth Grahame-Smith’s Abraham Lincoln: Vampire Hunter. Ok, after Matterhorn, I need a bit of fluff and this book sounds like intriguing historical fluff.

Tomorrow, Jesse will drive me to Dana Farber. We’ll have lunch in Boston. I’m looking forward to a fun day.

Thanks everyone for your messages. Your support and comfort keeps me rolling through these days. I appreciate every zoom you send my way.

Love…

Richard

April 27, 2010 – Radiation 10 [25 to go] – Swallows

2010-04-27T20:20:00.000-04:00

Today marks 10 radiation sessions in the book, twenty-five to go. It’s good to be in double figures! We’re on the new Little Bang time, moving from 8:40 am to 10:40 am. Jeff (& Nancy) has the block after me. It’s always good to see Jeff looking well and he says he feels good. He’s about two weeks ahead of me on the same treatment protocol. Today’s music was from SONiA (of Disappear Fear)’s recording Almost Chocolate – tracks played: “Fallin”, “Tattoo”, “13”, and “November Or Nothing”. I have a special request for Little Bang via email that I’ll play for her tomorrow.

This is a special drive to Boston week by Susan & Jesse (Tuesday and Thursday.) They’ve have been friends with Ann & I throughout our married lives. Our children grew up together and remain close. I’ve known Jesse since I was in diapers (no jokes, please.) We grew up a street apart and his backyard was on the way to my Nana & Zady’s home. Jesse’s Mom would wave to me as I passed by on my walk to or from.

Today, Susan drove me to Dana Farber. We had a fun ride in heavier than expected traffic (then again, is there such a thing as expected traffic in Boston?) I warned Susan that many of the people working in the clinics are “kids”, i.e. the age of our children. We talked all the way into town. With nearly thirty years of history and a pretty interesting now, we barely skimmed the surface of topics. We did get enough political venting in, complete with accents.

The first appointment was with the Speech & Swallow Therapist. Susan is an Occupational Therapist. I asked if she wanted to sit in on the session and she did. As we began, M., the Speech & Swallow Therapist, brought in a Clinical Research Coordinator, who presented me the opportunity to participate in an acupuncture trial. The trial will attempt to determine whether acupuncture can make swallowing easier during treatments (radiation and chemo) and whether it can facilitate the healing process. Ann & I will sit down and figure out if the scheduling is doable. I am ready and happy to participate in any research at Dana Farber. Whatever makes if easier for the next person coming in the room is meaningful. After the presentation, M. ran through her series of weekly benchmarks, checked my mouth and tongue (what’s a trip to DFCI without a tongue depressor invading my oral cavity?), and watched me swallow. She prepared me for the coming changes in swallowing as I move forward with radiation treatment. Susan and M. talked a bit about their training and clinical experience. I was glad that Susan had a bit of the day.

After Speech & Swallow, we headed down to L2 to the radiation department. After my treatment, Susan checked me for fresh meshface. Yup, forehead to chin to neck.

We had a nice ride back to Worcester, time for more conversation. When I arrived home, Ann was already here on her lunch break. Lunch sounded good, so I made a tuna salad sandwich. Sandwiches are getting to be more of a challenge even with Percocet. Ann left for work. I did my swallow exercise set #2, then hopped back onto my Kindle and read more of Mariantes’ Matterhorn. Fed the dogs dinner and took them out for a run. Then, I rode the LifeCycle for twelve minutes at half resistance. Ann returned from work and our friend Pam brought in supper from El Basha, babaganoush with pita bread and lentil soup. We’ve known Pam since our children were in preschool. It’s a real blessing to have friendships that span decades, so much life in common.

Tomorrow is a light day at Dana Farber, just a radiation treatment. That’s good because Thursday and Friday will be busy days. Hey, by the end of the week, I’ll have 12 radiation sessions and one feeding tube in!

Thanks everyone for being here with your support. It’s your company and comfort that makes this journey much gentler.

Love…

Richard

April 26, 2010 – Radiation 9 [26 to go] – Manic Monday

2010-04-26T18:05:00.001-04:00

I am a real doofus when it comes to pain medication. One of the suggested uses for Percocet during radiation treatment is to reduce mouth, tongue, and swallowing pain. The concept is that the patient takes the med an hour before a meal. Last night, I undertook the utilization of this complicated correlation and was able to eat my dinner with ease. Doofus is the technical term. My picture is in the dictionary.

Mondays are manic days for Ann & I at Dana Farber. Throughout the radiation treatment cycle, I will have at least five appointments that day.

Today, I got started at 8:00 am. My port was activated (a tube was put in for chemo) and blood was drawn. We haven’t had a port issue until today. The channel flushed and seemed to be fine, but the nurse was having trouble getting blood out (usually it flows easily.) She used different syringes and vacuum tubes without much luck. Then, a series of flushes was tried. That seemed to do the trick. The nurse thinks there was a small piece of coagulation that acted like a flap when she tried to draw blood.

Our next stop was down in nuclear medicine. First, we met with Dr. T., the radiological oncologist. He checked out the condition of my mouth, tongue, and throat. I seem to be right on schedule. Dr. T. discussed what the coming week will be bring, both with treatment side affects and the insertion of my feeding tube. We talked a bit about pain management. I told Dr. T. my Saturday night grinder story and he advised me that it might be a few months before I can swallow a sub roll comfortably. But, it’s something to look forward to; it’s always the simple things.

We walked across the nuclear medicine lobby to Little Bang’s waiting room. After a short wait, I was called. I took off my glasses, hearing aids, and undid the top of my johnny. The radiation techs saw my enabled port and decided that my mask needed a little customization. They placed the mask lightly over my face and chest to mark off a rectangle where the port’s needle and tube sit. Then they got out scissors and cut the rectangle away. The techs assured me that the mask felt no pain. When they locked me in, the mask felt as tight as ever. I wished Little Bang a good morning and she started running my radiation program. Today’s music was from Richard Buckner’s first recording Bloomed, tracks played were “Blue and Wonder”, “Gauzy Dress in the Sun”, “Rainsquall”, “Surprise, AZ” and bit of “Daisychain”. There’s nothing like the sound of a yearning pedal steel in the morning.

I changed out of my johnny, which means I took the johnny off and put my t-shirt and sweatshirt on, and we went to the next stop of the day, Head & Neck Oncology. I checked in and my vitals were taken. My weight clocked in at 149.8 pounds. I expected to be a few pounds heavier after the week’s gorging, but I’m still within six pounds of my pre-cancer treatment weight. Our appointment was with Dr. H., oncologist and team leader, and the other Dr. H., the hematology/oncology fellow. They started with a physical exam of my mouth, tongue, and throat. Next was a review of my blood profile from today’s draw. My red count is still low but it improved over the past week. The intensive chemo is still in my system, likely causing the lower counts. I told the doctors that I added fish to my diet to increase my protein intake. Unfortunately, my nutrition numbers weren’t available from the lab (those tests take longer) so we don’t know where my protein level is. At this point in the radiation treatment, my daily medications were evaluated. Dr. H. decided to simplify my daily intake and stop most of my non-cancer related meds until radiation is completed. A related goal is for all daily meds (cancer treatment and general health) to be administered in liquid form either orally or through the feeding tube. Dr. H. asked me how I tolerated my first booster chemo treatment last Monday. Other than hiccups, fatigue, and chemo brain (I left out the shopping trip story), I was fine. Dr. H. alerted me to potential side affects as we move forward.

We took the stairs next to Head & Neck Oncology down a flight to the infusion room. I checked in and Ann & I sat down to wait for my slot. It’s fortunate that we enjoy reading. Waiting time becomes reading time. Chemo time becomes reading time. My name was called and I was directed to my favorite chair in a corner with windows on both sides. It’s the same chair I was sitting in last month when cousins Al & Darlene arrived at the next chair for Darlene’s infusion. As the nurse began to set up, my iPhone dinged. I checked the phone and there was an email message from Darlene in my Inbox. Cool! I love serendipity! Of course, I replied immediately and told her where I was. The nurse handed me a cup of pills including three greenie mega-steroids. We’ll see if the insomnia gnome visits tonight! I was hooked up and the chemo booster was delivered in under an hour. It was still before noon, five appointments/treatments in under four hours – very slick!

Ann & I decided to go to the food court for lunch. Being aware of my doofus tendencies, I took Percocet around 11:00 am in anticipation of chewing and swallowing activity. Ann chose Subway. I was looking for a wrap, but Subway replaced the wrap with flatbread, which looked soft. I had tuna with veggies. Ann picked her favorite, a 6-inch Sweet Onion Chicken Teriyaki grinder on wheat bread. I was able to eat the flatbread sandwich with just a little discomfort (had to suppress my habit of eating fast.)

I think our ride home was easy. I closed my eyes on Storrow Drive (Boston) and opened them on Route 146 (Worcester.) Once home, the couch beckoned. Rudy and I assumed the position and napped while Ann ran a series of errands. I’m feeling good today, even after the pace of the morning.

This week, we’ll have help on commuting to and from Dana Farber. Our friends Jesse (Thursday) & Susan (Tuesday) will drive and hang out with me during my appointments. We really appreciate this. Ann will be able to schedule two full days of patients. The pace of her work and my illness is a lot to manage. Wonderful friends are a true blessing. Thanks, Jesse & Susan.

I’ve got the rhythm of my swallowing physical therapy down. I did a set on the way to Boston and another set on the way back (wait – we stopped for gas – I just remembered that! I must have woken up.) Did anyone in other cars catch me doing the exercises? They involve weird stretching of the face and sundry ways of sticking the tongue in, out, up, and down. I should notice the other drivers.

Thanks everyone for your kindness and consideration. Your comfort and support make my days brighter and my treatments lighter.

Love…

Richard

April 25, 2010 – The nap king, not the napkin

2010-04-25T17:19:00.002-04:00

First of all, a couple of clarifications. Dr. T. is not my radiologist but my radiological oncologist. Big difference. BeJae has named the Novalis Tx linear accelerator that radiates me “Little Bang”. I’ve adopted that name, but began using it without explaining it. BeJae is brilliant when naming cats, dogs, and apparently linear accelerators.

Dan stayed late last night and we ordered in from Blue Jeans. He had the penne marinara. Seeking more protein, I had a large tuna grinder (grinder is Massachusetts talk for a sub sandwich.) I discovered that in addition to my taste buds going south, the interior of my mouth had continued to degrade. It hurt to eat the bread! Realizing that this may be my last grinder until June, I balanced the pain with sheer enjoyment of eating. All that for fresh baked Italian bread, tuna with low-fat mayo, lettuce, tomato, onions, and pickles? Hey, you take your treats when and where they’re available. It’s all perspective. The PET feeding tube gets installed on Friday. The tube will be my new friend.

Slept in late this morning, until nearly 9:00 am, and did my usual morning things. I figured that Cheerios are out for now and opted for soft and smooth Cream Of Wheat, the hot cereal that carries childhood memories. I was concerned because Cheerios has a lot of Iron, which I need. Turns out, a single serving of Cream Of Wheat has 50% of the Iron RDA and I eat a double serving. So I’m better!

Ann & I hung out reading, watching our HGTV home improvement shows (we have lots of tips saved up), and talking. I did my first set of swallow exercises and found them less comfortable than yesterday. I see a trend. Rode my LifeCycle for twelve minutes at half my normal resistance, drank a bottle of water, and had lunch. It was about 12:30 pm. I lay down on the couch and asked Ann to wake me if I still was asleep at 2:30 pm. We planned to visit my parents this afternoon.

Ann woke me at 2:30 pm, but it took me fifteen minutes to reach the sitting position. Rudy Dog napped with me and suggested we remain curled up on the couch. I found my feet and walked around waking step-by-step. Then it was time for swallow exercises set two.

Ann & Rudy & I soon left to visit my parents. As is the norm for a Sunday visit, we watched sports while we talked. Dad was none too happy with the TV. The Celtics lost but lead the series 3-1. The Red Sox were ahead 4-1, when the knuckleballer Wakefield was pulled from the game and the reliever promptly gave up three runs to tie the score. Conversation easily won out over sports! Rudy is always happy to see my parents, even happier when Mom takes him into the kitchen and spoils him with a little chicken (white meat only for Rudy Dog.) Ann & I teach our dogs not to beg. The lesson is a bit looser at Mom & Dad’s home.

Tomorrow is a busy day at Dana Farber with five scheduled appointments: blood draw, radiation treatment, meet with Dr. T. the radiological oncologist, meet with Dr. H. the oncologist and team leader, and chemotherapy infusion. Sounds like a fun day! Last Monday, Dr. H. noted that my red blood cell count and protein levels were lower than he liked. I’ve spent all week watching my Iron and being certain that my meals maximized my protein intake. It will be interesting to see where my blood levels are tomorrow. I’ve been quite fatigued since Thursday, which goes hand in hand with the worsening condition of my mouth from radiation. Fatigue is also a sign of low red blood count. I hope my red blood cell count is up in the normal range or at least shows significant improvement. I would like to avoid a blood transfusion. But whatever I need, just Bring It On! Knew this whole treatment process was not going to be pretty when I signed on. Also was very grateful to be able to sign on, that a successful protocol is available. We live in amazing times.

Thanks everyone for notes and good wishes. You are a constant well that I draw on for comfort and support. You make this journey gentler for me.

Love…

Richard

April 24, 2010 – Tired boy, take 2 (3, 4, ?)

2010-04-24T18:03:00.002-04:00

Slept until 8:30 am this morning, had my Boost breakfast, and did my morning computer thing. Ann got up around 9:00 am and we ate breakfast and talked about the day. The sun was already pouring into the house. I did my first set of swallow exercises. One of the exercises involves yawning. Didn’t need to fake that! Around 9:30 am, I fell back on the couch. Next I knew it was 11:30 am and mandatory time to get up, wash up, and get dressed. We had company coming! I took one longing look at the couch and got myself going.

The condition of my mouth is changing day to day from radiation in a way different than from chemo. With chemo, the mouth sores and breakdown of the cheeks happened quickly and seemed to focus on particular spots. Today, I continue to feel the gradual breakdown of my entire mouth. It’s a little sore, an indication of what’s to come.

At noon, Ann’s Dad Bill & his girlfriend Mary arrived. Dan came into the house a few minutes later. Dan and Mary were meeting for the first time. We sat and talked for a half hour or so and then drove to Uno in downtown Worcester for lunch. Neither Bill nor Mary had been to an Uno restaurant before. We had a lovely meal. Between the four of us, we managed to take advantage of the diverse offerings on the menu. I think the highpoint was the shared dessert, Chocolate Malt Cake accompanied by two scoops of ice cream all covered with chocolate sauce.

During my meal, I discovered that my taste buds had decided to head south. I couldn’t taste my salad or vegetable soup. Uno vegetable soup is a favorite treat. Both the salad dressing and the soup burned my taste buds, not so bad I couldn’t eat, but enough to make me aware of what’s to come. I’ve had a nice food “vacation” the past weeks. I’ve enjoyed tasting my food and looking forward to eating different meals. As I head into the next steps of radiation side affects, I will anticipate the full taste of food. The past weeks are a real motivator as I look to the future.

After lunch, we returned home and sat and talked some more. Bill & Mary set off for home in mid-afternoon. I did my second set of swallow exercises, and then the couch beckoned. I caught another deep nap. My body is telling me that I need both sleep and exercise. Next week will be busy, five days of radiation mixed with other appointments at Dana Farber. Monday is chemo day with five stops on the agenda. Friday, after radiation, the insertion of my feeding tube is scheduled at Brigham & Women’s Hospital. Sleep and exercise sound good.

Oh, I wondered how it would look if I did my swallow exercises at a restaurant. What would people think? And would I empty the room?

Got wonderful news via Cousin Arlene yesterday. Darlene’s CT/PET scan showed that she is cancer free. That is beyond wonderful!

Thanks everyone for the messages of comfort and support. I feel the love and it brightens my days.

Love…

Richard

April 23, 2010 – Second post of the day: Meshface

2010-04-23T16:38:00.000-04:00

Am I tired today? I forgot to post this earlier on the blog – Meshface:

I rode the LifeCycle for 12 minutes at half intensity. Smooth ride. That pogged my memory. Yeah, let’s say that did it!

Love…

Richard

April 23, 2010 – Radiation 8 [27 to go] – tired boy!

2010-04-23T15:27:00.002-04:00

Eight radiation treatments down, twenty-seven to go! Bring It On! Though I must admit I'm happy to have the weekend off. I remember thinking that 35 straight days without a break might be better. Uh-uh, which I will say with more conviction as the side affects ramp up.

Between five straight days of the drive to and from Boston, the treatment plus whatever other appointments I have that day, and I guess getting up at 5:30 am to be at Dana Farber on time, I'm kind of worn out. Was exhausted today when I woke up. Slept on the way in (don't worry, Ann was driving!), I think napped during the treatment, and slept from 9:30-11:30 when we got home. I may have napped all day, but we have an appointment (at the house) this afternoon and papers to sign, so I needed to get up. Still hope to ride the LifeCycle this afternoon, think it will give me a burst of energy. Moderate exercise is that way for me. And is recommended by my medical team to improve the speed and efficacy of my healing.

We left Worcester around 6:30 am. Despite encountering a temporary parking lot on the Mass Pike due to a van accident, we arrived at Dana Farber around 7:45 am. I scanned in, dressed in a johnny, and got called in before I sat down in the waiting room. Music for today was from The Nields’ Bob On The Ceiling – tracks played: “Be Nice To Me”, “James”, “Just Like Christopher Columbus”, “Merry Christmas, Mr. Jones”, and a little of “Ash Wednesday”. This CD is one of a group that is special to me, the hot recordings when I first started doing my radio show back in the 1990’s. Odd to think of how long ago that really was. My life was enriched by all the wonderful artists I met in studio, by the friends who remain friends over the decades.

I’m ready to enjoy this weekend. We have plans to go out to restaurants with friends and family. The side affects from radiation are kicking in and I won’t waste any time anticipating them. I’ll just eat my way there! With vigor!

Thanks everyone for your support and comfort. I never feel alone and look at all the cards piled on the windowsills and at all the email messages sitting in the “Alien” folder on my MacBook and realize how lucky I am to have you in my life.

Love…

Richard

April 22, 2010 – Radiation 7 [28 to go] – Little Bang delay

2010-04-22T17:29:00.000-04:00

Alan drove me to Boston again today. The traffic was quite light. We reached Dana Farber around 7:40 am. All week, I’ve arrived early, just as the nuclear medicine department opened, and completed my radiation treatment before 8:00 am. When I scanned in today, the display showed a fifteen-minute delay on Little Bang (my Novitas Tx.) We walked over to the waiting room and found it filled with patients in johnnies. So, we had to wait. My appointment is 8:40 am and I was called right on time. But not early, I’ve become so spoiled. Today’s music got the techs a rockin’ – from Brother Trucker’s Something Simple, “Side by Side”, “Harold’s Barber and Beauty”, “She’s in Texas”, “For J”, and a taste of “Who’s Got Your Back?”

Today was treatment number 7, officially 20% through radiation!

I’m beginning to feel mild side effects from the radiation treatment. My dry mouth is a bit more pronounced each day. When I eat a sandwich, swallowing is little uncomfortable. My cheeks (interior of mouth) are lightly pitted. Fatigue is gradually increasing. For now, I can still eat with abandon (or what one might call normally.) I’m going to enjoy my meals this weekend and splurge at every opportunity!

Alan dropped me off at home around 10:30 am. We had another day of wonderful conversation, though fatigue slowed me down a bit. I had a few phone calls to make and my swallow exercises to do. Then I lay down on the couch for a rest that turned into a deep nap. Ann took her lunch break around noon. She picked me up and we went to Friendly’s to eat. I had a hankering for French fries, which I fulfilled. When we returned home, I went back to the couch and slept until 3:30 pm. My need to sleep today overtook my desire to ride the LifeCycle. That’s ok. I’ll listen to my body and ride tomorrow.

I’ve run through the swallow exercise routine for three days now. The routine needs to be done three times a day. I’m quite familiar with the rhythm of physical therapy. The big challenge is learning the exercises and the order of performance until it’s second nature. I plan to maintain the muscle tone of my tongue and mouth muscles. No free weights are involved though a spoon is.

Thanks everyone for being on this roller coaster ride with me. Your comfort and support light up my days.

Love…

Richard

April 21, 2010 – Radiation 6 [29 to go, under 30!]

2010-04-21T18:43:00.000-04:00

The greenies washed out of my system and I slept well last night. Woke up feeling strong and rested even after yesterday’s activities. Alan picked me up at 6:30 am and we drove to Boston. The ride was a real pleasure. We had a chance to talk without distraction, to catch up on the small details that define the edges of our lives. Traffic was light, only a few snags on The Mass Pike, and we arrived at Dana Farber about 7:40 am. I was the first patient to scan in at nuclear medicine and was in the room with Little Bang before 8:00 am. Before I got on the table, I snapped five shots of this magnificent machine. Here’s one, the full five are at this link:

Please note my mask sitting on Little Bang’s radiation arm awaiting my arrival. As soon as I lie on the table, the mask gets snapped on so I’m immobile, the music plays, and Little Bang dances all around me firing the green lasers and the red radiation. Today’s music was from Boston’s own (though now living in LA) Laurie Geltman’s first album No Power Steering. Tracks played were “Saddle Up Sally”, “Red, Green, Black & Blue”, “Bloodline”, and “Growing Down”. I had “Bobby Called From Texas” cued up but the tech hit the wrong line on the iPhone. No problem, there isn’t a bad track on the CD.

It was a few minutes after 8:00 am when I returned to the waiting room. While I was being treated, Alan didn’t have time to finish the crossword puzzle and start the Boston Globe Sports section. Before getting back in the car, we walked over to The Longwood Food Court (by way of the Boston Marathon corridor near the Lance Armstrong Center) and grabbed some coffee. Oh, java delight, I have my taste buds back for a little while! Café Americano rocks.

After today’s treatment, my neck felt warm for the first time. I don’t know if it was a little leftover flush from the greenie steroids or the start of the next stage. My dry mouth is definitely accelerating. I’m going to enjoy this break when food and drink have marvelous flavor and my mouth and swallowing are pain free.

Alan & I had an easy ride home, no traffic to speak of and more time for conversation. We’ll have another round trip to Boston tomorrow and I’m looking forward to the time and talk.

A little while after I arrived home, Ann came home for lunch. We ate (I had a massive lunch, lots of protein and Iron), caught up on our days, and relaxed until she had to go back to work. Feeling strong, I headed out on errands to the post office and the pharmacy. I was considering a LifeCycle ride (that would be two days in a row) on my return, but my body told me I needed a nap. So, Rudy & I hopped up, laid down on the couch, and fell into deep naps. Mine was deeper; Rudy got up at one point to check out someone walking past our house. I can nap with ease knowing he’s on alert!

Got wonderful news from Cousin Betsy today. Her PET/CT Scan was clean and she is free from cancer! Now, she can focus on recovery and getting stronger. It’s a year long process, but she’ll be able to return to teaching come September. Mazel Tov, Cousin Betsy! Make you go from strength to strength.

Thanks for all the emails, phone calls, and cards. I really appreciate how you all reach out to me and raise my spirits. The support and comfort make my days easier and my motivation firm.

Love…

Richard

April 20, 2010 – Radiation 5 [30 to go] & swallowing PT

2010-04-20T20:47:00.000-04:00

My plans for yesterday changed the moment I laid down on the sofa and Rudy Dog snuggled up on my arm. I was out until after 5:30 pm! The busy day topped by chemo won out, well sort of. Before I was hooked up to the IV, the infusion nurse handed me a cup full of pills including a few mega-steroid greenies. I was worn out in the afternoon, but wide-awake most of the night. I took a couple Diazepam, but they were no match for the greenies. I’ve been up and active all of today, no nap, and still have that wide-awake feeling even with fatigue creeping in. I wonder how sleeping will go (or not) tonight. Stay tuned!

Ann drove into Boston this morning and chose our usual route. Renee advised us that Route 9, on a normal day with schools open and everyone working, is gridlock. Traffic on the Mass Pike was heavy but steady. We left Worcester at 6:35 am and arrived at Dana Farber around 7:40 am. I was the first patient to arrive at nuclear medicine (which technically opens at 8:00 am), and the Novalis Tx staff took me right away. Today, I needed no adjustments to my position on the table, and Little Bang was done before 8:00 am. Today’s playlist was the opening two tracks from The Grateful Dead’s Road Trips Vol. 3 No.2 – Municipal Auditorium, Austin TX, 11/15/1971: “Truckin’” and “Bertha”. I was hoping to take a meshface photo today, but the mirrors in the changing rooms were removed and replaced by exquisite artwork. (Dana Farber feels like an art museum. Diverse framed media donated by grateful families covers every corridor, except for the spots reserved for Red Sox memorabilia.) So, I’ll have to figure another angle on catching the mesh in action. Tomorrow, I’m bringing my D70 rig in to shoot some quick photos of the Novalis Tx. The online photos just don’t it justice.

We were done early and took the elevator to the 11th floor to the Head & Neck Oncology Department. An appointment with the Speech & Swallow Therapist was scheduled for 10:30 am. Dana Farber is not your conventional hospital. Perhaps the difference lies in its major research focus. The appointment desk at Head & Neck texted the therapist and she responded that she could see us at 9:00 am. Amazing.

The Speech & Swallow Therapist, as have other staff specialists, outlined the treatment plan for the duration of my radiation and the period of recovery that follows. She urged us to focus on today and not get ahead of ourselves worrying about what will happen and how we will respond in the weeks ahead. That’s our approach, so we are in sync. I have a series of mouth and tongue exercises to do three times a day. They are pretty simple and can be done in the shower, the car, or while sitting around (but not at dinner – lots of open mouth work!) We’ll be meeting with the Speech & Swallow Therapist most weeks.

After our appointment while crossing the Head & Neck waiting room, we bumped into the couple from Sterling we met down in radiation last week. The husband is going through the same treatment protocol as I am for throat cancer. He’s a couple weeks ahead of me, so he can clue me in what to expect next. His advice was to eat up over the next week; my taste buds will soon be heading south. Again. Oh, the couple’s names are Jeff & Nancy. Some of you will find significance and coincidence in that! Starting next Tuesday, Jeff & I will have consecutive radiation slots. Like me, he doesn’t smoke or drink and is a gym rat. We’ve already commiserated about having our workout routines disrupted by cancer treatment and look forward to the day when our energy levels return to normal.

Ann & I needed a little break before driving home, so we stopped at The Longwood Food Court. Ann went to Dairy Queen for a chocolate sundae. Remembering Jeff’s counsel, I went to the Red Barn coffee shop for a Café Americano with cold soy and Splenda – my first coffee in over a month. During intensive chemo, coffee tasted sour, so sour that I gave up my favorite vice. But now, for this short window, I can indulge! And dream of the days, soon to come, when I can wakeup with a bike ride and a wicked strong cup of Café Americano!

I was feeling wide-awake and very up, so I drove home. It was an easy ride. When we arrived home, Ann decided she needed a nap. I paid some bills, made a few phone calls, and had a light lunch. Then I decided to do the grocery shopping. Grabbed the list and drove to Shaw’s. I started in the produce department and spent twenty minutes selecting lettuce, tomatoes, bananas, and blueberries. It began to dawn on me that chemo brain was fully engaged. Over the next hour and half, I managed to get almost every item on the half page list (and a few impulse buys, I was still hungry!) If someone diagrammed my path through the market, likely you would get to see the most inefficient shopping trip of all time. While I was in the checkout line, Ann called to see where I was. Still shopping!

When I returned home, Ann & I put away the groceries. I’ve committed to riding the LifeCycle every other day, so I changed into my exercise clothes and road. The ride was fluid. I hope I can keep up the riding through radiation. The more activity I put into my day, the quicker and easier my recovery will be. That’s motivation enough. So no nap today and lots of keeping busy. Getting back to where I started, let’s see if I sleep tonight! If not, I have plenty to read and eventually the greenies will wash out of my system.

My brother Alan is driving me into Dana Farber the next two mornings. It’s a really big help for Ann (& I.) I’m not alert enough to drive to Boston early in the morning. Having the two mornings free opens up a lot of time for Ann to see patients. We really appreciate the help.

Thanks everyone for your support, comfort, and messages. This is one of the most (if not the most) challenging times in my life and knowing how so many people care is a singular gift.

Love…

Richard

April 19, 2010 – Radiation 4 [31 to go] & big news!

2010-04-19T15:37:00.004-04:00

Today, in deference to The Boston Marathon and the need to find a new route without streets closed down due to the race, Ann & I left twenty minutes early for Dana Farber. We took I-90 (The Mass Pike – give it a name and you can charge a toll) to Natick where we picked up Route 9 for the remainder of the ride into Boston. Traffic was light and the sun was bright. Naturally, we made it in early to Dana Farber, before 7:15 am! The early arrival turned fortuitous, as there was some shuffling of the five appointments I had for today.

My radiation, scheduled for 8:40 am, was completed before 8:00 am. Today, the techs hit the ball on the nose when they arranged me on the table and no adjustments were necessary. Music for radiation 4 was from Sara Hickman’s Necessary Angels, the following tracks: “Pursuit Of Happiness”, “The Best Of Times”, “The Place Where The Garage Used To Stand” and “Sister And Sam”. As soon as I was out of radiation, we had our appointment with Dr. T., my radiologist. There’s not a whole lot to evaluate after four treatments, but he talked about the full cycle of radiation. One question I had was whether my saliva glands that need a heavy dose would grow back. Dr. T. said it’s likely that the glands will be gone permanently on the tumor’s side, but I will have at the very least the large gland on the other side of my mouth. There will a new normal as far as my mouth is concerned. But hey, I’m getting real used to dry mouth anyway! And it’s a small price to pay.

We went upstairs to have my port hooked up (both channels, they needed flushing) and blood drawn. That appointment was for 9:00 am, but the process was complete well before that.

Our next stop was to see my oncologist and team leader Dr. H.. He reviewed the results of my post-intensive chemo CT/PET scan. The news is exciting! I still have one lymph node that is large but has declined in size from SUVmax 5.2 to 2.8. It could be malignant or it could be scar tissue. The primary tumor on my tongue has decreased in size from SUVmax 11.1 to 3.1, a significant change! Dr. H. said the remainder could also be just scar tissue or a small patch of tumor. Next, he stuck the hose up my nose. Ok, the hose has a camera on it and outputs to a monitor allowing the doctor a clear view of the tumor site. He liked what he saw, but could not determine whether the remainder was scar tissue or tumor. So, he decided to stick his finger way down my throat and see if he could tell tactilely. I’ve gotten real good about having stuff stuck down my throat without the gag reflex kicking in (or out.) The tactile approach was also inconclusive. My radiation with chemo booster protocol would be the same either way. Dr. H. has said all along that intensive chemo is the preparation and radiation is the cure. The goal is to be certain that 100% of the tumors/cancer cells are eradicated. The technical medspeak for the results of my intensive chemo is a partial response. That means they got a lot of The Alien rousted with a little more to go. Yes!

Dr. H. looked at my blood profile and is concerned about my red blood cell count and protein level. The former may still be recovering from the intensive chemo; my calves ache the way they have before when my bone marrow is working overtime. For both, I need to analyze my diet carefully and push iron and protein. If my red cell count stays low, the response would be a blood transfusion and I’d prefer to avoid that. If necessary, I may augment my diet with fish. We’ll figure it out. Once I have the feeding tube in (scheduled for April 30th), they can fill my tummy directly with anything I need.

Dr. H. started me on a weekly low-level dose of Carboplatin (chemo with platinum in it!) Its purpose is to enhance the effectiveness of the radiation. Dr. H. has researched the interaction of chemotherapy and radiation (including the order of the treatments) at Dana Farber. I am so fortunate to have him as my oncologist (thanks again, Rachael!) and Dana Farber as my hospital.

We went down a floor to the infusion room and they hooked me up to a fresh blend of Carboplatin. Half an hour later, it was done. The nurse flushed my ports and we were good to go.

After a quick lunch, Ann & I headed back to Worcester. Because of the marathon, we took the same route we used on the ride in. Our travel time was less than an hour. We’re going to try the route again tomorrow to see if the traffic level is always as fluid as today when some folks had the day off. We took Route 9 to I-95 to I-90. As we drove on I-95, we looked up to an overpass bridge and saw the marathoners running. That was very cool.

Going to take the rest of the day easy. I may nap if my body tells me to. A trip to the market is a possibility if we decide that I need to augment my diet. I am fully entrenched into Mariantes’ Matterhorn, so I may read all afternoon. I am fatigued and chemo-brained, but so very up after today’s news. Maybe I’ll put on music and dance! Dancing is good for the soul.

Thanks everyone for the emails, cards, calls, and surprises. Every day, I am grateful for your comfort and support. Thanks for taking this walk with me.

Love…

Richard

April 18, 2010 – Pushing the limits

2010-04-18T17:38:00.004-04:00

Friday was the test drive for the taste buds. Last night, I pressed the accelerator to the floor hard enough to feel the skin on my cheeks peel back. Ok, that’s an exaggeration. That’s how I used to feel driving my 1972 Mustang Fastback with a 302-2V featuring twin Holley carburetors. I guess the reason that analogy popped into my head was a conversation about our kids driving to and from college/work in distant cities and how it seemed too long a haul. When I was living in St. Louis in the early 1970’s, I made the drive to Worcester in about 21 hours, timing my arrival at The Boulevard Diner for around 3:00 am. After a salad, veal parm with penne, a piece of Table Talk Boston Crème Pie, and a few cups of coffee, I’d wander home to collapse and sleep into the next afternoon. No, I was not a vegan then. Though a part of me yearned to be a vegetarian, but didn’t have a clue how to get there. Besides, St. Louis had too many (or not enough) Steak ‘n Shake drive-ins.

Yesterday was a special day. Ann & I took it easy most of the morning and early afternoon, doing a few chores, taking a couple of naps, watching a little TV (home improvement shows on HGTV), playing on the computer, and reading. I finished Lori Lansens’ The Girls (highly recommended) and started Karl Mariantes’ Matterhorn, both on the Kindle (loving the Kindle!)

Around 3:00 pm, Cousins Alan & Arlene arrived for a visit. I can’t write this too often, so here goes. Arlene has been a rock and inspiration to me during the cancer experience, from diagnosis to treatment. She’s fought the beast three times over three decades. Arlene is one of the sweetest people I know, but also one of the toughest. I lean on her experience and try my best to emulate her positive attitude towards life’s challenges. We email daily and talk on the phone weekly. She is still recovering from her last bout with cancer, but always puts the focus on me.

We traded treatment stories and caught up on health details. Then, we reached into the rich trove of family stories. Arlene & I are the children of two of three brothers. The three were each other’s best friends. Many of my happiest childhood memories revolve around the interaction of the brothers. Their patter during card games was dicey and priceless. I grew up with my cousins; we spent lots of days as one family and the ties run deep and true. Near the end of the visit, we listed our favorite movies and found almost an absolute overlap. We go for the off-kilter comedies. It was a funny and fitting conclusion.

Ann & I caught our breathe for an hour and then Larry & Lora arrived to pick us up for our evening dinner plans. As I wrote yesterday, lifelong friends are special and to be cherished. Larry & I grew up together. Our parents were close friends before they were married. The memories go back as far as memories go. Like our parents, we’ve raised our children together from infants to adults.

We headed out to Bertucci’s in The Solomon Pond Mall in nearby Berlin and met up with Cousin Betsy who drove in from the other direction. Truth be told, Betsy & I are not exactly related but we’ve decided that we are cousins, so that’s all that matters. Betsy just finished treatment for cancer, her second bout with the microcellular beast. Betsy started treatment well before me, but we’ve overlapped the joys of chemo, tests, and being poked and prodded. She’s been with me all the way, emailing suggestions and perspectives on dealing with cancer. We traded stories about our treatments and how we leave modesty far behind once in the milieu of hospitals. As we went through chemo and lost our “normal” taste buds, we wrote about meeting for dinner one day and being able to enjoy our meals. It once seemed so far away, but here were today munching on Bertucci’s outstanding rolls. Betsy has been a real friend & cousin, a fellow traveler on this difficult path. We could blow off steam and laugh about the disease. I often expect too much of myself in dealing with the side effects of chemo and Betsy has been really helpful in telling me to rein that in, to be more gentle with myself. There were times I really needed to hear that.

Dinner, wasn’t that the starting point of today’s post? I had a salad with balsamic vinaigrette, three rolls, and three quarters of a pizza with no cheese topped with spinach, portabella mushrooms, and caramelized onions. I was ready to stop at half a pizza, but my body urged me on. In the pre-cancer days, I would have downed the whole pizza, but a guy’s gotta work himself back into shape, right? But I could feel that skin on my cheeks peeling back or maybe it was just the garlic.

If I’d been able to see Laura today, I would have been in the company of all three fellow travelers on this road of cancer treatment. Laura, a friend from college days, lives outside of St. Louis, so that would have been a bit of a trick. Laura does a real good job of hitting me upside the head when I really need it. That’s what friends are for.

Dan arrived around noon today (just after my 12 minute LifeCycle ride.) We’ve been sitting around, taking it easy, playing with the pups, and watching a few episodes of “Big Bang Theory” and “Modern Family.” I really appreciate his weekly visits. He’s been wonderful and helpful all through my treatment. When we really need a hand, Dan’s always here.

Tomorrow is a busy day. We have five appointments at Dana Farber (radiation, radiologist, blood drawing, oncologist, chemo infusion) starting at 8:40 am. The drives in and back will be interesting. Tomorrow is Patriots’ Day, a Massachusetts holiday, and the day of The Boston Marathon. Our normal route will be blocked by the marathon, so we’ll try to sneak into Boston via Route 9. Some people have Patriots’ Day as a holiday (I never have), so the traffic might be lighter. Then again, there will be thousands of people going into Boston to watch the event. We’ll leave a little earlier and hope our alternate route works.

Thanks everyone for your support and wishes. I feel connected to you all and never alone.

Love…

Richard

April 17, 2010 – Taking it to the limit

2010-04-17T13:32:00.001-04:00

Last night, I took my taste buds out for a test ride. Chemotherapy affects the quick growing cells in the buds. At its worst, all I could tolerate was bland food. How bland? Applesauce burned. Pudding burned. Soy yogurt burned. My diet consisted of eggbeaters, Cream of Wheat, and Boost/Ensure. Since I finished my third and last intensive chemo cycle, I’ve gradually been branching out into pasta, salad (how I missed salads and balsamic vinaigrette), and sandwiches with a little bite. Last night, I challenged my taste buds without thinking about it.

Ann & I had dinner at El Basha (Middle Eastern food) with Jesse & Susan. We ordered a hummus and babaganoush appetizer which tasted just yummy. For my main course, I chose an El Salad with a side of meatless stuffed grape leaves. My taste buds rejoiced and the tart flavor of the grape leaves stayed with me until I fell asleep.

The El Salad is named for the famous El Morocco Restaurant that graced Worcester for ~five decades. It started in the basement of a three-decker where it had a Beat Generation feel. Jazz musicians would gather after gigs and jam into the wee hours while munching on Middle Eastern treats. Theater and major entertainment stars would drive to Worcester and the El from Boston for after performance dining (their photos covered the walls.) In the 1970’s (I think), the El moved into a glamorous new building across the street. It was set on a hilltop with a panoramic view of Worcester County. The New El had a lavish dining room and function rooms that often were used for jazz concerts. In the late 1990’s, this landmark restaurant closed leaving a hole still unfilled in the city, musically and gastronomically. El Basha has revived the revered El Morocco Salad (now if they could only get the recipe for the Mud Pie!)

After dinner, Jesse & Susan suggested we stop at The Bean Counter to pick up dessert. The Bean Counter is noted for its coffee and home made treats. They even do vegan! My big vice in life pre-cancer was coffee (Café Americano with an extra shot, cold soy, Splenda) but during chemo, coffee first tasted bland and then sour in a very bad way. Now, it is suggested that I avoid coffee and caffeine. But I loved walking into The Bean Counter and inhaling deep lung fills of coffee and espresso. I chose a couple of vegan cookies: chocolate chunk and oatmeal raisin. It’s been a long while since I’ve had a rich cookie!

We four came back to our home, sat around and talked. Talk led to a lot of laughter. I’ve known Jesse since childhood and Ann & I met Susan early in our marriage. Our kids grew up together and still make time to see one another. These life long friendships are special and priceless. It’s more than the history; the understanding exceeds mere words.

Today will be another cool day. Cousins Alan & Arlene are coming by to visit this afternoon. Then tonight, another life long friendship couple, Larry & Lora, are taking us to Bertucci’s in The Solomon Pond Mall where we will meet up with Cousin Betsy. I get to see the two women who are my rocks in the same day! They have guided me through cancer and treatment, sharing their experience fighting the disease. I don’t know where I would be without their counsel and wisdom.

Thanks everyone for your comfort and support. I’m beyond lucky to have friends and family like you.

Love…

Richard

April 16, 2010 – Radiation treatment 3 [32 to go]

2010-04-16T14:51:00.000-04:00

Three treatments down, thirty-two to go. I'm 1/12th of the way through radiation!

Ann & I had an easy commute to Dana Farber this morning. You can never tell how a drive into Boston will go during rush hour. We arrived about forty-five minutes early for our 8:40 am appointment. We’re starting to recognize the patients who have treatments around the same time as mine. Everyone is upbeat and positive. Everyone looks good.

Today, we met a couple whose slot is normally at 10:00 am. The husband is also being treated for throat cancer and also has Dr. H as his oncologist and team leader. His treatment path is similar to mine with the same three 21 day chemo cycles before radiation. The reason he was in early is that he was having his stomach tube put in today. He started radiation on April 1st, so he is about a half month ahead of me. He looks good and is pain free. While he was being radiated, his wife & Ann talked about watching husbands go through cancer treatment. The couple is much younger than us, he’s 40, and they have two young children. It was helpful for me to see someone two plus weeks ahead of me in treatment looking well and still eating normally. My stomach tube goes in on April 30th. Guess Friday is tube day!

My treatment was similar to the first two, except I needed two adjustments by the tech before I was lined up to their satisfaction. One of the techs was especially interested in today’s musical choice, selections from Jenny Lewis with The Watson Twins’ Rabbit Fun Coat. With the adjustments, I was on the table longer and heard the following songs: “Run Devil Run”, “Rise Up With Fists”, “Handle With Care”, “The Charging Sky”, “Melt Your Heart”, “Rabbit Fur Coat”, “You Are What You Love”, and a bit of “Big Guns.”

I keep forgetting to mention Mesh Face. When I change back into street clothes, in the mirror is my face, marked by the mesh. You could use my mug for graph paper or a crossword puzzle. It’s pretty funny. I think with Sam’s (costuming) help and a bit of stage makeup, I could be ready for Star Trek!

When we returned home, Ann went grocery shopping and I rode the LifeCycle for twelve minutes at half intensity. I was debating whether to wait another day, but my back wasn’t stiff from the car rides, so I went for it. Also, Monday we have multiple appointments at Dana Farber, so now I can ride Sunday and be on the desired every other day ride schedule. My back feels good but I still need to be gentle with it.

Tonight, we’re going out for supper to El Basha with Jesse & Susan for a little Middle Eastern food. My appetite is good and I’m up to indulge. This is the time that my goal is to pack on the pounds. There is balance in all experiences!

Thanks for all the cards, calls, posts, and emails. I feel so lucky to be surrounded by love and comfort. I always know I have friends and family with me, holding me as I walk this path.

Love…

Richard

April 15, 2010 – Radiation treatment 2 [33 to go]

2010-04-15T14:34:00.002-04:00

I won’t start off by saying that today is a taxing day, but my iPhone calendar does make note of it. Forgive me, I woke from a very heavy power nap and have been trying to clear my head ever since. Just had a scrumptious lunch (PBJ, soy yogurt, chocolate silk soy milk) and my body is staying in a seated position without the extreme urge to lie prone on the couch. Rudy Dog keeps an eye on me. We napped together earlier and I think he thinks another nap would be a fine idea. Why so tired?

My back is still bothering me though it’s better than yesterday. Last night, I took a Diazepam and a pain pill before bedtime. The combination is effective for my spasms. Also, it knocks me right out. When I woke this morning at 5:30 am, I was stiff and sore but the spasms were gone. Why were we up so early?

My initial radiation treatment yesterday was at the fine time of 2:20 pm. The next nine, including today, are at 8:40 am, smack on the nose of Boston rush hour. So we needed to leave Worcester at 6:30 am. The remaining treatments will be at the ideal time for avoiding traffic of 10:40 am.

The ride in today took a little less than two hours (arrived at Dana Farber parking garage at about 8:20 am) but I don’t remember much of it. The meds from the night before were still doing their thing and I snored my way down I-90. The rest of the day went exactly like yesterday. I checked in at nuclear medicine, donned a johnny, and we sat until my name was called. A tech brought me to the radiation room, hooked up my iPhone to their stereo, and helped me onto the table. Another tech quickly put my mask on and locked me in place. Then the techs left and alignment x-rays were taken. Today, I needed to be shifted to the right a bit. Then the linear accelerator did its thing. It occurred to me that it’s a good thing I’m a nose breather. As tight as the mask’s mesh is, I’m not certain that I could breathe through my mouth.

I decided that a drowsy morning called for ethereal jazz. So, today’s music was from Miles Davis – “Right Off (Take 12)” from The Complete Jack Johnson Sessions followed by “All Blues” from Kind Of Blue. A few folks asked which of BeJae’s songs played yesterday. They were “You Married Louise”, “Navigating Limbo”, and “Out Of The Heartland” from Navigating Limbo and “Let’s Drive On (Jackie Says)”, “Iowa”, and “Those Summer Nights” from Red Cross Woman. I’ll list songs going forward.

After my treatment, I changed back to street clothes (a Webster Alumni sweatshirt for good luck) and Ann & I set off for Worcester. The ride home was easy, light traffic and fair skies. When we arrived home, I lay down on the couch, Rudy assumed the position, and the rest you know.

I feel well and stronger, still no side effects from the radiation. I would have ridden the LifeCycle today, but my back is sore in a spot that tells me a ride would be counterproductive. I have a bad habit of exercising through pain and making an injury much worse.

Thanks everyone for the words of comfort and support. We’re over halfway through the full treatment cycle. You’ve made this a gentler, warmer, and easier ride.

Love…

Richard

April 14, 2010 – Radiation treatment 1 [34 to go]

2010-04-14T17:48:00.001-04:00

Today, we went live. Ann & drove into Boston. We left plenty of extra (read: unexpected traffic) time and arrived early. Once down on L2 in Dana Farber (where the nuclear medicine department is – below ground), I took my new check-in card and placed it under the scanner at the greeter’s desk. On one monitor, my personal information flashed on the screen for about fifteen seconds and then cleared. On the second monitor, it showed that “my” machine, Novalis Tx, was on time. The greeter Roy made sure I had a bottle of water (dry mouth is a major side effect of radiation; the saliva glands get fried) and offered me a second.

Next, we went to the Novalis Tx waiting area and I went into the changing room to strip to the waist and don a johnny (Loomers pun.) Ann & I sat and read until my name was called.

I followed the tech down the corridor past the control room with my photo on one of the monitors and into the radiation therapy room. The machine treating me is a Novalis Tx linear accelerator. If you’re curious, general info on linear accelerators can be found here. The first thing I did was pull out my iPhone with my music and a tech hooked it into the room’s stereo system. Immediately, BeJae Fleming came blasting through the speakers (selections from Navigating Limbo and Red Cross Woman – BeJae’s been with me all the way on this journey, so it seemed fitting to start radiation with her songs, voice, and guitar.) Then I popped out my hearing aids, took off my glasses, and assumed the position on the table with my head & neck on the aligning support. Unlike yesterday, when everything happened slowly, as soon as I was settled on the table, my mask was put on me and locked down. A tech told me they would first take a couple of x-rays. The arms hummed and flat panels covered with lights (not LED’s, something much cooler) inspected me. A couple of red flashes went off. The tech returned and moved my shoulders slightly to the left. She left and I heard the door shut. Immediately, the arms hummed and began a series of movements. They would align the position of a third arm with horizontal laser like lights in patterns crossing the entire panel. I figured out that green light is the lasers’ aligning and red light is the linear accelerator shooting radiation. As BeJae’s songs filled the room, the three arms danced and flashed lights. I didn’t feel a thing; the side effects will come gradually. The radiation will cumulatively affect parts of my mouth (saliva glands, taste buds, swallow muscles, speech box, etc.) while destroying the tumor and cancer cells. The linear accelerator suddenly got quiet and immediately a tech was unsnapping my mask. I was up and off the table and techs were “See you tomorrow.” Time for the next patient.

Today was fascinating from a geek viewpoint. I know the fatigue and other side effects will hit me soon. For now, I’ll enjoy the ride and live out sci-fi fantasies. Any anxiety I had about radiation therapy is gone. The treatment is a known entity. In a couple of weeks, the effects of the radiation will present challenges, but it will be a gradual ride to the top of the roller coaster and a fast (though longer) ride down.

Thanks everyone for your support and comfort. I feel you walking with me. Cancer treatment is difficult physically and psychologically. You all soften the blows and I appreciate that beyond words.

Love…

Richard

April 13, 2010 – Radiation dry run and THE MASK

2010-04-13T17:52:00.000-04:00

Today was an interesting day. Got up this morning and found myself back on the Imodium train. I would say that eventually the chemo would wash out of my system and my stomach would recover except I’ll be having a low intensity chemo dose every Monday during radiation treatments. Oh well. Overall, I feel good. Rode the LifeCycle for twelve minutes at half my usual intensity before lunch. Took a shower and found that my back was having spasms. I hit it with a lot of hot water. Of course, this happens on a day when I need to lie prone on a hard table! After a quick lunch, we packed up and drove to Boston.

The Nuclear Radiation Department has a greeter. He gave me my radiation treatment card and showed me the workflow system. The card has a bar code on it. Once scanned, the monitor briefly displays my information and then shows a list of the radiation machines and their status (e.g. On Time or Delayed At Originating Airport.) If the doctor needs to see me, his name will appear next to my machine. Slick technology, when I scan my card, my data goes to the radiation machine team and the nursing staff.

One of the radiation techs came over and sent me into a changing room where I stripped off my clothes from the waist up and put on a johnny (why is called a johnny?) Once I was ready, he took Ann & I on a walk down a corridor to the radiation control center for my machine. The center features multiple monitors including one with my photo (just so they know they have the correct patient.) As far as I can figure, each component of the radiation machine is hooked into a separate monitor. The tech explained that the staff would monitor me via video cameras and that the room had microphones so they would hear anything I said. Then we went around the corner to the radiation room and entered the world of sci-fi turned to reality.

I didn’t have a lot of time to examine the machine. I was laid down on a table (similar to a scan table) and my head was centered on a support. When my mask was constructed, my head was on a twin of the support. They aligned me left to right and then brought out MY MASK. They slid it on and locked it down. My head, neck, and chest were immobilized. Wearing THE MASK is cool, especially with this massive device with multiple arms and lasers spewing green and red beams. Ann took a photo of me on the table fully masked. Note the laser beam on my neck and another across the johnny.

Once I was locked in, everyone else evacuated the radiation room. Soon, the multiple arms of the machine began moving. Each stopped over my head, flashed lights and lasers across me and hummed. Once each arm was done, it blinked and moved on. I felt like I should be replying to these arms or at least be saying hello or thank you or something polite. The whole process took about fifteen minutes. It was similar to a live run, only instead of radiating me, they took x-rays and measurements for review by my radiologist, a physicist, and one other specialist. Oh, they play music over the loudspeakers while the treatment is going on. They picked out Elton John for me (must be my age and lack of ‘do - all the hits: “Goodbye Yellow Brick Road”, “Benny And The Jets”, etc. – at least they could have given me Tumbleweed Connection) but invited me to bring my iPod, iPhone, or a CD with music of my choice. That’s going to be interesting. Not only will the music be for me, I also get to educate the ears of the radiation room staff as every sound in the room is piped to them. I’ll avoid the impulse to bring Coltrane’s Ascension. But I will have fun with musical selections. I’ll keep you posted.

After my dry run, we saw one of my radiologist’s nurses who went through miscellaneous details about the treatments. Then we were free to drive home through Boston traffic, a packed Mass Pike (until the I-495 interchange), and rush hour Worcester mayhem.

I feel good. I feel Bring It On good, ready for the radiation treatments to begin. I’ve halfway there. Let’s go!

Thanks as always for your comfort, support, and communications. You are all unbelievable and I appreciate every thing you do for me!

Love…

Richard

April 12, 2010 – Burning the candle

2010-04-12T17:49:00.001-04:00

Today is my vacation day before radiation starts. Tomorrow afternoon is the “dry run” when they hook me into the mask, fire off lasers in all directions, and align my penetration points. Wednesday, we go live. Watch for my glow on the horizon.

For today, I have no cares. I woke up hungry and with plenty of energy. After breakfast and puttering around on my computer, I set off for The Worcester Public Library and Worcester City Hall. I found an unbelievable parking place in the library lot and its meter showed an hour and eleven minutes’ time remaining. Hot stuff! Then I looked over at the library and its big sandwich sign “CLOSED ON MONDAYS!” and looked back at the parking space. Oh well! City Hall is a short hike from the library, so I set off on a walk across The Worcester Common, the oldest public common in the United States. People used to graze their farm animals there. Now, the common features a controversial skating rink. It was a big issue last election; should the city have spent the money? The sun was shining and there was a brisk but not unpleasant breeze. I greeted street people and babies in strollers. Once at City Hall, I took the elevator up to the Tax Collector floor and paid the real estate taxes for our home and my parents’ condo. I love traversing the corridors of City Hall; there are many languages in the air.

On the hike back to the library parking lot, my legs began to complain. I began to complain to myself about my level of conditioning. The first two weeks of radiation treatment are supposed to be easy, so I hope to ride my LifeCycle every other day starting tomorrow. When I reach a point where my body tells me I need to rest, I’ll back down the exercise. The information packet from the Dana Farber radiation team suggests the patient maintain as much activity as is possible. The more activity, the easier the recovery and healing go.

With the Worcester library closed, I decided to head one town south to Auburn. The Auburn Public Library is open on Monday. All the Central Massachusetts libraries are part of the CMARS system and a card in the system is valid at all the member libraries. I was starting to feel tired, but I figured that Ann is going to be sitting in waiting rooms a lot over the next month (radiation is daily.) She finished her last book yesterday and it would be cruel for her to be stuck reading old magazines while I was being radiated. The ride to Auburn was easy and I found nine mysteries that I think Ann has yet to read.

In the library parking lot (no meters in Auburn), my stomach started the “I’m hungry for lunch" dance. I phoned Corner Grille and ordered a Thai Veggie Wrap, a tangy combination of assorted grilled vegetables, Thai black rice salad (with beans), topped off with tamarind sauce. It’s a two-hand sandwich. I met Ann at home during her lunch break and we spent the early afternoon together.

Dad called with a computer problem. My niece sent him some photos of his great-grandchildren via the Kodak website. A login is required and Dad was confused about the password, thinking it was the computer’s operating system making the request, not the website. When Ann left for work, Rudy Dog & I drove over to my parents’ condo to visit and “fix” Dad’s computer (success.)

Rudy gets really excited when visiting my folks. Mom was home resting her back and Rudy jumped up on her bed and rolled around on her comforter, snuggle greeting her. Dad wasn’t home yet, so we hung out on Mom’s bed. I showed her my Kindle and Mom was fascinated. She isn’t device friendly, but yet she was amazed at the screen’s clarity and the number of books the Kindle already contained. I showed her how books are downloaded and she kept saying “what a wonderful idea and what a wonderful gift!” Dad arrived home from his exercise program. Rudy gave a quiet greeting bark then ran to the door and jumped up and down around Dad. Mom asked me to show Dad the Kindle and I did. He agreed that it was amazing and wanted to see all the things it could do. Dad has a habit of pressing buttons unintentionally (makes computer and cable/DVR phone support challenging) and the Kindle has many buttons Before I could run it though its paces, I had to undo the journey Dad had embarked on within the device. The three of us sat around playing with Rudy and talking. When it was close to doggie suppertime, Rudy & I left for home.

After feeding the doggies and letting them run a while, I thought I was ready for a power nap, but my body said "No! You go blog, boy!" So here I am.

You may notice that this posting has little mention of cancer or treatments (don’t worry, starting tomorrow I’ll go all medical on you again.) I’m having that kind of day. The weekend was renewing and today my body feels good. My mind is clear and my only thoughts about radiation are Bring It On! I was hoping for a longer break between chemo and radiation, but this day has been sterling. It reminds how I will feel after my treatments. The sooner I start radiation, the sooner my treatment is complete. Onward!

Thanks everyone for your kind greetings, support, and love. I go forward with vigor because you are along for the ride, bumpy or not!

Love…

Richard

April 11, 2010 – Home, thinking radiation

2010-04-11T18:32:00.001-04:00

Ann & I had a big, lovely breakfast at the Inn in Chatham, and then left for home around 10:30 am. We arrived a couple of hours later and were greeted by two tail-wagging doggies and our friend Charlene. The doggies, as always, were good for her. Lacey & Charlene got in long walks.

I unpacked my bag and took inventory of my body. My calves are still sore from the walk down to the beach and back up to the Inn. That’s a bit disappointing; the walk would have been easy and not taxing before chemotherapy. Our weekend was a bit more active than normal. I feel fatigued even after a nap on the ride home.

Ann & I & the doggies spent most of the afternoon sitting out on our deck. We talked, read, and soaked in a gentle Spring breeze. I’m finding the Kindle easy to use and view. Lori Lansens’ The Girls is fascinating and when I finish, I’ll just move the cursor to choose from six other books on the device.

I’ve been trying to get at the source of my down days. Part of it is physical with the fatigue and other changes in my body, but I was stuffing my feelings, which is never productive. After my session with psychologist D, I’ve been focusing on my mind-set. When I feel blue, I sit and let the emotions settle and concentrate on what and why they are telling me.

When I started cancer treatment, I saw the intensive chemotherapy as the great challenge and radiation as the lesser. My energy level and degree of fight were both at their maximum. The chemo ate away at energy and fight, but in a normal course. Once horns are locked, all reserves are used as needed. The chemo cycles became a known entity and I worked through them.

I have to admit that I am a bit intimidated heading into the radiation therapy. The unknown has sharper teeth. When Ann & I met with the radiation team, I was at the nadir of chemo cycle #3, probably not the best day for me to hear all the details. There are many potential side effects to radiation and it’s the responsibility of the team to alert and prepare me for all of them. Though there are remedies for each side effect, there will still be discomfort (duh!)

The mouth and neck area contain the saliva glands, taste buds, gums and teeth, voice box, and swallow muscles (among other delicate items.) All of these will be impacted by the radiation. I will have a speech therapist and a nutritionist working with me as my treatment progresses.

A major goal is to keep my weight stable, vital for healing. I’ll have a feeding tube put into my stomach on April 30th. I’m not worried about that procedure, it’s similar to having my port put in: go to Brigham & Women’s Hospital day surgery, check in, take a nap, and wake with a new device implanted. Once such a procedure would have been intimidating. At this point, it is a minor event (and I sleep really well the day after anesthesia!) Cancer treatment has gifted me perspective and taught me to relax when I need a bit of bodywork.

The weekend away was a chance to recharge in a beautiful setting. I helped my body by eating mass quantities (still about 8-10 pounds below my weight before chemo), getting some exercise, and resting. My mind was off cancer most of the time, though the emotions about radiation treatment surfaced from time to time. I let them sit prominently with me and felt the fear and the intimidation lurking. Once acknowledged, the fear lost its teeth. The intimidation fell into perspective. Radiation will not be a lot fun. It will be a significant challenge but I will work diligently on whatever therapies/remedies are prescribed by the medical team.

The key is that I feel ready to face the challenges of radiation therapy. I have come to grips with my fear. Today, I read through Dana Farber’s mouth and throat radiation therapy guide. It lays out how we will manage pain and counter side effects such as dry mouth (most of the saliva glands will be out of service), nutrition, and speech issues. They know what they are doing. They care for me as a patient and a whole human being. I will be fine. On Tuesday, my Bring It On mantra will lead me into radiation treatment. I will fight my way through the treatment day-by-day and know the finish line is ever closer.

Thanks all for your comfort and support. I never feel alone.

Love…

Richard

April 10, 2010 – Day Two In Chatham

2010-04-10T17:02:00.000-04:00

Ann & I are having a great time. We’re relaxing, taking the day slow and easy. I finished Christopher Moore’s new book and will move on to Lori Lansens’ The Girls, the first time I’ll read a novel on a Kindle. Oh, I do love tech toys and even more the folks who gifted me this one!

The weather is sunny but breezy. We spent the morning wandering around outside the Inn exploring places to sit in the sun. The view of the Atlantic Ocean with the Chatham sandbar prominent is magnificent. We hiked down to the beach and listened to the ocean. Ann took a walk while I sat and read. After lunch, we leaned into soft easy chairs in front of the fireplace and picked up our books. We returned to our room where I lay down on the couch to relax and fell into a deep power nap.

Speaking of lunch, I’ve been eating up a storm (what does that mean anyway? I love metaphors, but a storm? How do I digest that?) Let’s just say, that I keep finding add-ons on the menu to augment my meal.

This is a really fine break. I go long stretches without thinking about cancer or cancer treatment. We are both recharging. Having time just for us with no distractions and no schedule is delicious.

Thanks everyone for your support and kind thoughts. A special thank you to the Kindle crew. I am truly blessed.

Love…

Richard

April 9, 2010 – Day One In Chatham

2010-04-09T17:39:00.002-04:00

Ann & I got up this morning, packed our bags, and drove leisurely to Chatham on the elbow of Cape Cod. On the way, we stopped at Uno’s in Bellingham MA. Ann had the Asian Salad. I had the endless soup and salad which amounted to one salad and one bowl of Uno’s delicious vegetable soup. We arrived at the Inn around 3:00 pm and have been relaxing ever since. I tried for a nap, but my sleep cycle is shot. Eventually, I’ll fall asleep.

It’s raining today, but Saturday and Sunday are supposed to be sunny. We’re looking forward to walking the beach tomorrow!

During our three-day Cape Cod vacation, my postings will be brief. I’m also staying off email. This is a break!

I shared this information with some of you last night as insomnia kicked in, but it’s really happy news. At 11:00 pm, I received an email from one of my Dana Farber team about yesterday's CT/PET scan. It was sent by the hematology/oncology fellow who never seems to sleep and always seems to be at Dana Farber:

"Your scans confirm a response to the chemotherapy - which we already suspected based on the clear decrease in the lymph nodes in your neck that we could feel. It's not completely gone yet, but we've definitely made progress."

Now we're gonna kick that cancer's butt out with radiation. Course the radiation will kick my butt, but I'll recover in two months.

Thanks everyone for your support and for being on this roller coaster ride with me. I never feel alone. I am so grateful that you are all in my life.

Love…

Richard

April 8, 2010 – Rockin’ to Boston and back

2010-04-08T21:13:00.002-04:00

The best way to view a morning commute into Boston is as a sterling opportunity to listen to music. Since I was driving alone, I had full control over the playlist and VOLUME. Yeah, it’s a pleasure to drown out all the road noise. I left the house at 7:30 am with an empty stomach (clear liquids only before the scan) figuring I had built in an extra half hour for my appointment time of 9:30 am. Forty-five miles, two hours, no problem, right? Ah, Boston, sweet city of art and culture, perceived liberal base of the USA, most noted for its virulent drivers and random cow path roads. On the way in, I listened to Dan Bern’s new live release Live In Los Angeles which our son Dan alerted me to yesterday. It’s a ninety-minute show, similar to the show Dan & I saw him play at Club Passim on the same tour (except the Passim show was on the anniversary of John Lennon’s death and Dan Bern did a fitting tribute – anyone tape that?), but not long enough for my ride. So I segued into JJ Grey & Mofro’s Orange Blossoms, a release highly recommended by Papa Ray. Over the past forty years, I have never been disappointed by Papa Ray’s recommendations and today was no different. As I locked into the teeth of Boston’s urban mayhem, JJ Grey’s hard driving vocals cut my way through cursing criss-crossing drivers. Papa Ray says Grey is the best white rock vocalist from the South since Greg Allman. I wasn’t disappointed.

I made it to the Dana Farber garage at 9:20 am, parked and hustled to L2 and the nuclear medicine department. Made it just in time. Got registered and the CT/PET Scan tech called me in. We went to a “quiet room” and I was given an IV injection of nuclear material and rested for forty minutes. I was able to finish my Jess Walter book and start Christopher Moore’s new one Bite Me: A Love Story (if you haven’t discovered Moore, grab a copy of A Dirty Job, Fluke, or Lamb – he’s twisted in all the best ways.) Then we moved to the scan room. The CT/PET Scan is similar to an MRI only much quieter. Down the tube, in and out as it adjusts, and then it takes a series of digital images from just above the nose to the top of the thighs. I lightly napped for the half hour. The tech came in and said all done.

It was about 11:45 am. I called my sister-in-law Lynne who was with our family friend Fran at Brigham & Women’s Hospital. Fran was in for some diagnostic tests for a likely malignant growth. We agreed to meet up after I had a quick lunch (well, breakfast.) After a trip to the Dana Farber cafeteria, which confirmed that my taste buds are still out to lunch, I walked over to Brigham & Women’s. Fran & Lynne were in the same wing where I had my mask built. We sat and caught up on family news and talked about cancer. Fran dealt with the disease seven years ago and has been in remission. We shared war stories and talked about our positive experiences at the Longwood Medical Campus. A conversation between two people who have been in or are in cancer treatment is a special sharing. It’s not possible to understand the experience unless you live it. It goes beyond the physical and mental effects. The impact on family is paramount in the patient’s thoughts. Chemo, radiation, and surgery are difficult and painful as is the understanding that permanent changes are part of the cure. But it is more difficult to watch the effect on family members. As a caretaker or observer, one is powerless; there are many things that one can do – drive to and keep company during treatments, keep the refrigerator full, be there with love and support – but there is a boundary that only the cancer patient can cross. As I go through treatment, I am still powerless, but I am actively doing something. There is pain and discomfort involved, but there is a plan and I can mark off benchmarks. Today, I can say I have finished my three intensive chemo cycles and anticipate radiation as the next step. It’s no fun experiencing the treatment, but at least there is the feeling of actively seeking the cure.

After her tests, Fran got good news. She has a node that is contained. It will be removed by surgery and followed up with radiation and maybe light chemo. To the non-patient, this treatment sounds harsh; to the patient it is a relief. I went through a range of emotions during my diagnosis. The first surgeon I saw offered a poor prognosis and said that the cause of the tumor was unknown. The team at Dana Farber identified the cause as a virus, offered an excellent prognosis, and a treatment plan that may have once sounded horrific, but put in perspective seemed like a gift.

My ride home was much easier, under an hour’s drive. I finished the JJ Grey album, and moved into the Angus & Julia Stone CD Jeff & Nancy gave me. I fed the dogs early, then collapsed on the couch and slept for a couple of hours.

Tomorrow Ann & I are headed to Chatham on Cape Cod for a mini-vacation through Sunday. We need a break but Ann I think even more than I. See above. Our friend Charlene is coming to dog sit. Lacey Dog is very excited because she & Charlene share a love of long walks. Rudy will nap. I will likely check in via the blog during our break, but briefly. I will stay off email. It is vacation!

Thanks everyone for your support and comfort. You make my days brighter. Knowing you are here with your love makes each treatment gentler. You are wonderful and appreciated!

Love…

Richard

April 7, 2010 – Dancing with Drs. D

2010-04-07T17:45:00.000-04:00

Had a good session with psychologist D. Got to examine what’s been going on in my mind, as far as emotions and attitude. One concept I carry from our discourse is how to approach what I’m thinking and feeling. When I interpret what my body is telling me (physically) about my digestive system, I do so with the understanding that my body is no longer conventional. I am dealing with a body that has endured three cycles of powerful chemotherapy. When trying to come to grips with my feelings and attitudes, I treat myself no differently than my pre-cancer treatment self. It’s important that I understand that my mind is no longer conventional, too. Between the chemo agents and all the medications I’ve ingested, my emotions and attitudes are reeling and still seeking equilibrium. Once radiation starts, my body and mind will be facing new challenges. Again, I will have to learn the new language(s) that they are speaking. Being gentle and patient with myself will be important. It will be all new, though the adjustments to chemo will serve as a foundation to dealing with my radiated self.

Last night, I had my first insomnia night of this third chemo cycle, which technically ends today. Whoopee! I had really strange dreams during my intermittent sleep periods. Should have written them down. I can remember two: being in an institutional building (medical, business?) with odd corridors and elevators that had a food court like area that included shops and an open theater. A weird play about Jewish doctors was scheduled to open and I discovered that BeJae was one of the co-writers. I kept looking around for a placard with her name on it so I could snap a photo and email it to her. But, as happens in dreams, the placards kept shifting and moving as I pulled out my iPhone. I was thinking what a surprise and I found it first! The second dream, recurring, was that I was late for my dental appointment today. Each occurrence, the time, the reason I was delayed, and the cast of characters were different. I guess I was worried that my insomnia would keep me in bed too long. Ha! I have a 57-year-old prostate that guarantees I will not oversleep!

So, I did get up on time, 8:00 am for a 10:00 am appointment. Had a bowl of Cream of Wheat and a Boost for breakfast and did my usual morning things. I left the house in plenty of time and drove over to Jeffrey’s office (my dentist and a family friend who is family.)

When I first talked with the medical team at Dana Farber, they went under the assumption that I didn’t know my dentist’s name. Apparently, a lot of people don’t enjoy going to the dentist. I’m not one of them. Ann laughed at the Dana Farber team and said that not only did we know our dentist’s name; we knew his grandchildren’s names. After my examination, the team complimented Dr. Jeffrey’s fine work on my teeth and gums. It wasn’t what they were expecting.

Jeff wanted to look at my mouth post-chemo and pre-radiation. There are options for dental self-care during radiation treatments and he wanted to confirm his earlier plan. My mouth looks good considering the three cycles of chemo. Jeff finalized a few details on my daily care and gave me some supplies to get me started.

As I said, I enjoy my visits to the dentist. The music is always good and the conversation mighty fine. Jeff and I often swap albums; looking for tunes that other might like and may not have heard. Today was no exception. Jeff’s lovely wife Nancy arrived just as my dental exam was finished, bringing a copy of Angus & Julia Stone’s Down The Way (I have more commute to Boston music!) and a sweet card. The card is our windowsill along with the all the cards sent by friends and family. It’s a way you’re all here in the room with me.

I returned home and had a few chores (for work and home) to do. Then I settled down for a power nap. Ann came home and said hello, but I didn’t wake for another hour. Guess I needed the sleep! Spent the afternoon outside with doggies in the 80F degree sunshine and inside catching up on email.

Tomorrow morning, I go to Dana Farber for a CT/PET scan. That data will be used in planning my radiation treatment. It will also define the impact of my chemotherapy (especially curious about the primary tumor.) I need to drink two bottles of water, but cannot eat or drink anything else. Have to be there by 9:30 am, but given Boston traffic (and a fire in Boston today), I’m leaving the house at 7:30 am. I’ll bring a book and hope I’m early.

Thanks everyone for your emails and messages. I’m grateful all y’all are in my life and are here supporting and comforting me on this journey.

Love…

Richard

April 6, 2010 – My bike is my friend

2010-04-06T15:14:00.001-04:00

Yesterday, I did take that ride on my LifeCycle. Road 12 minutes at half my normal intensity. Turned on my iPod, and in random mode it kicked out the following two songs to start: The Allman Brothers Band “Midnight Rider” from Live At The Fillmore East (Deluxe Edition) and The Rolling Stones “Happy” from Exile On Main St”. These two songs immediately reminded of my Webster buddies Papa Ray and I-Man; the two albums tie to adventures, musical and otherwise, I shared with the two JAX boys. I was on that bike pedaling and Duane's guitar cut right through me. And I got mad. Mad for the first time in a long while. Mad at cancer. I can't be nice in a fight for my life. I had a rush of energy along with the anger and started yelling (in my head, expletives omitted) at the tumor. Anger is not something I do well or often. I used to see all emotions as “good” or “bad”. As I’ve gained wisdom and less hair (pre-cancer), I’ve grown to realize that each emotion has a full range of good to bad. What I do with the emotion is the key. So, here I am pedaling and seeping anger and it felt so good! When my bike ride was finished, I was in the best mood I’ve been in a long time. And I carried some of that being pissed off with me. My task now is how to harness it when I need it.

I’d certainly earned a nap, but didn’t fall asleep immediately. I lay on the couch patting Rudy Dog and having him snuggle closer. At some point, I went deep into nap land. When Ann came home, it took me a while to wake up and sit up.

My stomach is still playing the Imodium game, so I ate a careful supper. My digestive system has to straighten itself out; I need to eat mass quantities and put some pounds on before the radiation treatment starts.

I stayed up late watching the Butler v. Duke NCAA Men’s Basketball Championship. It was like a book I couldn’t put down. I was rooting for Butler, who lost by a bucket, but it was an exceptional game to watch. Tonight my Connecticut Huskies take on The Stanford Cardinal in the NCAA Women’s Championship. I’ve got my bottles of water lined up! Side note: did you see President Obama play Clark Kellogg in horse (renamed POTUS for the occasion)? The President has game! He was consistently hitting long three pointers. Clark let Obama win the game I think (amid some gentle trash talk), but the President’s left hand jump shot is impressive.

I woke this morning feeling better. My stomach is still unsettled, but I’m hoping it will straighten itself out soon. Chemo attacks cells from the esophagus down to the lower GI tract. It’s such a pleasant side effect.

I started the day with a Boost and a bowl of Cheerios with a banana and soymilk. It’s odd, I l normally love Cheerios, my choice for breakfast for years. But now they taste, uh, not so good. I ate them, need them, ignored the taste. Being a vegan toughens up your taste buds. I did the dishes and cleaned up the kitchen, then poked around on my computer before taking my morning nap.

I had a few emails about yesterday’s posting. My dear Webster friend and ace nurse Laura advised “I REALLY THINK YOU ARE EXPECTING TOO MUCH AT THIS TIME.!!!!!!!!!!!!” and then elaborated in great graphic detail about each paragraph in my posting. She wasn’t sure whether to send the message, but I wrote back, yes, please hit me upside the head when you think it’s called for. Laura’s a peach; she never minces words. Cousin Betsy wrote “I understand your anxiety; you wouldn't be human if you didn't have some. You're dealing with the unknown. And if you're asleep, you don't have to think about what's next on the agenda.” and “I'm in disagreement about earning your naps. You're undergoing treatment for cancer.....those naps are well-deserved and greatly needed. I feel like I earned every single nap.... Your body needs to regroup. I never fought it. I think naps are as important as medication, maybe even more so.” Betsy just finished her cancer treatment and has been wonderful in holding my hand as I go through the process. Cousin Arlene added, “Please don't be so hard on yourself... All your feelings are normal. You still have a long road ahead but you will take it ‘one day at a time’, one moment at a time. One thing that can't be controlled is the passage of time and it will pass, along with your treatments.” Arlene is the sweetest and toughest woman I know. She’s fought cancer three times and is an inspiration to the rest of her family currently fighting the fight.

This whole anxiety and attitude thing is my current challenge. Am I being reasonable with myself? If someone else were dealing with this same issue the way I am, would I think they were being too hard or too soft on themselves? My mind is a dangerous neighborhood. The monsters and the angels are me or mine.

I rode the LifeCycle again today, same time and resistance. It was a fluid ride and felt good, but I didn’t have an epiphany like yesterday. Hey, how often should I expect an epiphany? I’m off to see psychologist D and see if he can help me clarify what I’m feeling and thinking.

Thanks everyone for your support and good wishes. I never feel alone in this fight.

Love…

Richard

April 5, 2010 – Earn those naps

2010-04-05T15:20:00.002-04:00

If I’m not careful, I could start these postings the same everyday. Here’s how I started yesterday “I slept heavily last night. Got up around 9:30 am, had breakfast and only some meds. My mouth was feeling better, so I cut out the pain meds and Magic Mouthwash. I did my usual computer check, then settled back on the couch and fell fast asleep.” I can say basically ditto for today (got up at 8:30 am), which is a bad pattern.

I am in some kind of funk; think a lot of it is anxiety. It could be from this whole process wearing me down, it could be the pending radiation treatments which are starting earlier than originally planned. Instead of a couple to three-week break, it’s really less than a week. Whatever the cause, I need to root it out and deal with it.

When I began treatment for cancer, I was bound and determined (and continue to be) not to feel sorry for myself, no pity pot. My goal was and is a positive attitude with which to fight this disease. I have to balance that goal with an understanding of how I work emotionally. When I set the bar, I usually set it too high and too rigid. Nothing is absolute. These treatments are difficult challenges and I may not be allowing myself enough space to feel those difficulties. I can’t pretend the pain and anxiety away. I can’t work it away. I have to find a way to let myself feel what my mind and body are telling me, embrace the emotions, and then let them go. I think the anxiety may be breeding there.

When I’m home alone, I’m left with my mind for my companion. My mind can be a dangerous neighborhood. Sometimes, I trick it (really myself) into being a surreal but happy place that has no roots in reality. Other times, it plays games with me and sends me into dark moods. What’s important for me to constantly acknowledge is that I am responsible for what goes on my mind. Instead of accepting a view that is too soft or too harsh, I must challenge what’s going up and inject a bit of reality.

I’ve decided that I need augment my KEEP BUSY slogan with another: EARN YOUR NAPS. I still need more rest than usual, but I also need activity just as much. If I want a nap, I can pay for it with chores, a walk, or a bike ride. If I let myself be a couch potato, my body will atrophy and with it, my mind. Got to keep those two in tune.

At lunch today, Ann & I took the doggies for a short walk around the neighborhood. My legs felt fine after the walk, but my body a bit dazed. Without the meds, I should be clear. I need to get active.

My stomach is playing games again. At the point in the chemo cycle when I drop the pain meds, I go from stool softener mode to Imodium mode. All I ingested this morning and noon was a Boost and white toast with jam. At about 3:00 pm, I downed a double portion of Cream of Wheat and that has settled well. I’m considering a short bike ride followed by an earned nap.

Thanks everyone for comments, emails, and support. On the easy days, you make me glow. On the hard days, you pick me up and get me moving in the right direction. I can’t imagine being on this fight without all of you standing with me.

Love…

Richard

April 4, 2010 – Crawling out of the hole

2010-04-04T19:26:00.002-04:00

I slept heavily last night. Got up around 9:30 am, had breakfast and only some meds. My mouth was feeling better, so I cut out the pain meds and Magic Mouthwash. I did my usual computer check, then settled back on the couch and fell fast asleep.

Dan arrived a bit after noon and brought lunch from Pho Dakao. I had my first “real food” in maybe ten days – Tofu Summer Rolls – tofu and minced vegetables rolled in rice paper with peanut sauce on the side. After lunch, we (with Rudy Dog) drove to my parents’ home for a visit. We stayed for about an hour, until I started feeling fatigued.

We returned home and Dan & Ann & I sat outside. Today was another gorgeous Spring day. Dan threw the ball until the dogs wore themselves out playing fetch. After a while, I was too warm, and soon found myself sleeping on the couch again. This was beginning to be one of these visits where Dan watches me sleep. Not too much fun for him. Woke up mid-afternoon and we decided to watch a bit of TV. We had episodes of “Modern Family” and “The Big Bang Theory” on the DVR. Laughter is good; it pulled me fully awake.

We cobbled together a bit of supper. I was able to eat a Boca Burger without too much discomfort. I’m hopeful that tomorrow, I’ll be able to resume a near regular diet.

I’m not certain why I’m so tired today. It could be the change in all my meds as I finish the difficult period of the chemo cycle. Perhaps, it’s the aggregate fatigue of the chemo process. I do know that I have to snap out of it. Tomorrow, I need to get busy and stay busy. There is a long road ahead and I must be ready to move forward shoulder down into the wind.

Thanks everyone for your support, hopes, and good thoughts. Thanks for being on this ride with me.

Love…

Richard

April 3, 2010 – Perspective

2010-04-03T16:52:00.002-04:00

I judge a good vacation by how well I don’t know what day of the week it is. If I have no clue, the vacation is smoking!

Since I’ve been in cancer treatment, I’m real foggy as far as what day it is, most notably during the weeks I’m dealing with chemo side effects. My phone and computer beep at me to remind me of doctors’ appointments (someone has to be in charge) otherwise one day is like another. So here it is, a beautiful sunny Saturday, once the reward for a good week’s work, now a day in the down period of a chemo cycle. The sun and blue sky helps my spirit. How could I ever feel down on a day like today?

My perspectives have been altered in more than a temporal sense since I started cancer treatment.

The boy who was me before cancer would tense up before having blood drawn. Now, I have perspective. Blood drawn? Can’t use the port for this one? Ok – but my left arm is shot, try the right one. No, not there, that vein collapsed yesterday. How about here? Too deep for you. Top of the hand? Sounds grand.

Pre-cancer, the thought of having a lesion lanced would have led to a sleepless night. Now: Where do you want me? Using a scalpel instead of a needle? Cool. This is going to sting a little? Ok. On three, all right, 1 – 2 – hey that was on two! Naw, didn’t sting at all. Ok, maybe a little, but it was nothing. Great job, Doc!

Being in the hospital negated my sense of modesty. When I was in my Worcester oncologist’s office getting hydration just after a hospital stay, he wanted to look at my lesion. There in the infusion room, I started taking my jeans off, and Dr. S. said “we can wait until the examining room.”

Being in the hospital changed my outlook on my body. I need a shot in my stomach, ok. Do I mind if the student nurse administers it? Have you done this before? Once? Ok, go for it! (And she did, assertively, but that was cool.)

The port surgery was a snap, a nap and when I awoke I had a device implanted. The feeding tube surgery will be the same deal. I didn’t and won’t lose any sleep over a simple procedure.

Maybe I was just being a baby about all this stuff before. A needle, a scalpel, they hurt for an instant (sting / burn / pinch) – it’s really nothing. I think of all the time I wasted worrying about these “procedures” and laugh at myself.

Cancer has many lessons to teach me. These are useful ones. Perspective comes with a price but also with humor.

Thanks everyone for your thoughts and prayers. I am so grateful to have you with me on this journey.

Love…

Richard

April 2, 2010 – Cumulative and cumulous

2010-04-02T20:12:00.000-04:00

The physical effects of chemo are cumulative. They are easy to quantify, classify, and identify. The physiological effects are also cumulative, but subtle.

I began this journey upbeat with the resolve to stay upbeat. Overall, I think I’ve been successful. I have my easy days and my challenging days. I keep the focus on now and don’t get lost in the unpleasant details of my future treatments. Throughout this process, I’ve kept a camera running on myself, watching for any signs of self-pity or negativity. What goes on in my head is my responsibility and I have the tools and motivation to stay level and positive.

That said fatigue is physical and mental. I’m really ready to be finished with this period of active chemo symptoms. My mouth and tongue are still pitted and covered with sores. I would love to eat something other than Cream of Wheat or scrambled eggs. Mostly, I’d like to feel quasi-normal for a couple of weeks.

In my daily routine, I focus on dealing with the physical aspects of fatigue. Today, I realized that I need to extend that focus to my mind. It’s a pretty obvious concept but one I haven’t addressed. Mind and body are intertwined and, when I listen, clue me in on what the other is experiencing. Keeping the fatigue focus on body only doesn’t cut it. Mind and body support one another. I’ll start by using self-hypnosis and relaxation tools.

Today was a gorgeous Spring day. Ann & I and the doggies sat out on the deck. We talked and read, but mostly soaked in the sun. I love Springtime in New England. The air is sweet and musky. A wide variety of birds visit our backyard. We live about quarter mile from the headwaters of the mighty Blackstone River. On a quiet day, I can hear the water flow from the pond into the river. I have a Blackstone Valley vanity plate on my Prius. It feels like (and is) home.

I figure by Monday, I’ll be out the other side of the working side effects of the chemo. That will give me a couple of weeks to put weight on before the radiation treatment starts.

Thanks for your support and good wishes. You carry me through these days and I am ever grateful to have you in my life.

Love…

Richard