February 28, 2010 – Hey tomorrow is March!

Yesterday was a fun day.  Pam dropped by for a visit, followed by Jesse & Susan.  Later Lora came by.  Wonderful to have good friends in the house, though I’ve learned from my first ride on the chemo rollercoaster – keep visits short!  As much as I’d like to gab all day, even as I’m falling asleep while sitting down, it’s not the best approach to healing.  So, Ann has helped me set up reasonable time limits.  I am so bad at setting limits on my time with friends and family.

Dan arrived early with a couple of bags of goodies from Whole Foods (Worcester doesn’t rate one) in Cambridge.  He & Ann were going to do our regular household shopping, but Dan noticed Ann was tired and volunteered to do it alone.  Dan is a rock.  We hung around and watched the Olympics, mainly curling.

I’ve become a big curling fan.  A couple of months ago, we Netflixed a film called “Men With Brooms”.  It’s an independent movie made in (yes) Canada.  The film is really fun, a romantic comedy / family drama built around curling.  The first sporting event I watched on the chemo coaster was The Super Bowl and I had trouble keeping up with the pace.  The Olympics arrive and with it, curling.  I’m watching and thinking “hey this is a great sport, it’s like bowling mixed with billiards with chess-like strategy.”  The flow of the game was exciting, stone after stone building the tension.  Why was everyone else in the room yawning?  Turned out that the pace of curling matched my attention span.  Kismet!

We had dinner, talked some more, and watched the Men’s Curling Gold Metal Game (Suisse vs. Canada – you know who won, right?)  Then Dan and I got caught up in the Four Men Bobsled Team runs – the Team USA “Night Train” sled.  Ann went to bed but Dan and I decided I’d stay awake though the final bobsled runs.  About this time, I began to feel a little nausea (must have been the end of Olympic curling) for the first time.  I waited for it to pass, but after an hour or so, decided to take a couple of meds.  The meds worked and I haven’t had nausea since.  Less meds I take the better, so long as I take them when I need them!  Dan left around 11:00 pm, and I read a bit as I waited for the nausea to pass.  Last chemo cycle, I lost my ability to concentrate on the printed page.  This time, I’m doing ok, probably a mix of less meds and better tolerance to chemo (we’ll see on this later as the chemo effects ramp up.)

Had a great nights sleep and woke with plenty of energy.  While I was drinking a bottle of Boost, I read the ingredients and discovered that Boost has way more potassium and magnesium than Gatorade!  Been drinking lots of Boost, especially when my mouth is sore.  No wonder my potassium and magnesium levels have been so strong!  No mo’ Gatorade - anyone want some?

This afternoon, Ann went to see the musical Suessical, starring Jesse & Susan’s daughter Julie.  The show was too long for me to consider attending, also too many people while the chemo is pumping.  In lieu of the show, I drove to my parents’ home and Rudy Dog & I visited for a (preset time of) half hour.  Rudy is so excited when he realizes we’re at my folks’ place.  He runs round and round the condo, through every room, greeting Mom & Dad with big doggie grins and a nuzzling head.  We had a wonderful visit.  Dad & I compared ports.  Rudy & I returned home and I took a nap.  My brother Alan stopped by with Uno Vegetable Soup, a nice and very welcome surprise (yum!)  As soon as Alan headed to our parents’ home, Ann returned from Suessical.  The musical and Julie were both wonderful, says Ann.  It was especially fun for Ann, seeing the baby grown now into a beautiful young woman, putting her verve and personality into the challenging part.

Well, the hiccups are sneaking up on me, so I took a Bacliphen.  It is really useful to know that the 5FU is the likely culprit (80.1 ml left on the pump.)  The Gold Metal Hockey Game between USA and Canada has just started the third period.  My book awaits.

Thanks everyone for your support and inspiration.  Arlene, really enjoyed our conversation today.  You are my hero!

Love…

Richard

February 27, 2010 – The Infusion Room

Getting started early today. It’s 5:14 am and I’m wide-awake.  Once home yesterday, I took a couple of Bacliphen an hour apart.  They worked, slapped down the hiccups (after an hour and a half), and kicked me into a three-hour nap.  A sweet, deep three-hour nap, the kind from which I wake up gently and easily.

Emailed my doc about the hiccups and Gatorade.  Gatorade seems to be the trigger.  I wondered if I could switch to other liquids and take supplements.  He replied very quickly that my magnesium and potassium blood work have been excellent and suggested trying other liquids for now.  So far, so good.  It’s 5:22 am and I’m a thirsty boy.

I haven’t been having nausea per se.  Last chemo cycle, my stomach did all kinds of weird stuff, talked to me in a foreign language that gave me no clue what I supposed to do.  So, I had a two-week tummy ache.  Ann suggested that less might be better.  So, other than Emend, I’m not taking the anti-nausea meds, which pull my stomach in opposite directions.  So now, my stomach says very clearly “I’m hungry.  Feed me Boy” and since I understand I can reply “Hang on there for a few more paragraphs, the mind has first spot in the body queue.”  Stomach says, “Ain’t that always the way unless there’s a chocolate pudding pie sitting in front of you?”  And I say, “Chocolate pudding pie?  Where?  What you doing to me?”  But the mind, ever smarter than the stomach, takes over and takes me back to the Infusion Room.

The chemo treatment is easy, especially with the port.  I feel good as the fluids flow in (other than having to pee every 10 minutes) but know the next two weeks will have their challenging days (and hours.)  At yesterday’s infusion, there was a woman accompanied by her husband in the next chair (shades of the barber shop only with People Magazine instead of comics!) who had a painful time getting a good IV in.  Again.  Her nurse suggested a port. Ann talked to her husband and I showed him my dual Power Port, explained how easy it went in (a visit to pre-op, a nice nap, minimal pain afterwards), and that it was in use the next day.  Later, on one of my potty breaks, I showed it to the wife and answered her questions.  She wasn't looking happy about her IV connection.  And agreed that a little nap for a port might be a better solution.  So maybe, I returned a favor others have given me as I go when they have been.  That means you my fellow riders on this roller coaster, but also my patient partners I meet at the elevators, in infusion chairs next to mine, at the next table in the cafeteria.  It is powerful how people endure and battle cancer with such positive and uplifting attitudes.  I'm proud to be a member of this club.  The secret handshake is a big smile and a warm welcome.

It’s 5:36 am and my stomach has been patient.  Time to (quietly) hit the kitchen.  Will pick this up later.  Dan is coming to visit.  Hooray!

Back up at 9:00 am.  It’s snowing and all the trees and bushes are dusted.  Pretty way to start the day a second time.  Feeling up and strong, went and rode the LIfeCycle for 12 minutes.  Found a better way to position the 5FU pump so my pedaling and the bag didn’t fight.

Dan is coming to visit this afternoon (repeating myself) as are Jesse & Susan.  Afterwards, I’m betting on a nice midday nap.  Naps are wonderful.  Why did we fight them as kids?  Is it a sign of wisdom that we now seek an afternoon sleep?  Let’s go with wisdom!

Love…

Richard

February 26, 2010 – Return of the hiccups

Last evening before I got unhooked from the IV lines but had my 5FU pump attached, I had my first hiccip.  So, immediately, it was Bacliphen to the rescue.  One pill did the trick (which is good because two makes me punchy and three a zombie) and Dan & I went and had a dinner of pasta & vegetables over penne with a spicy pomodoro sauce preceded by a fresh crispy salad coated with balsamic vinaigrette.  I’ll be back to all soft food soon, so mealtime is exciting time now!  Ann napped in the room while Dan & I ate though our leftovers made a good meal for her.  I think these appointments and treatments are harder on Ann than me.  The doctors talk to her in peer language, while I get the simplified version.  She knows the implications of tests – e.g. my blood work – mere numbers for me (black is good – red is the normally abnormal to abnormal) but hard data to her.  Often feels like I have the easy seat.  I understand.

With my Dad, I went to his appointments and hospital sessions to support him in his trials.  He, in turn, seemed more concerned about me, made the day a field trip, and laughed off all the probes going in here and out there.

Back to the hiccups.  We had a wonderful nights’ sleep.  Separate Queen beds, one for me and my 5FU pump, one for Ann.  The room was arranged such that the beds’ headboards backed on to perpendicular walls.  That helps with snoring, but also my pump’s discharge gurgle.

Again, with the hiccups.  After waking, stretching, and a good morning kiss, I went over to my dop kit, grabbed my toothbrush and hiccupped.  Put down the toothbrush, grabbed a Bacliphen, picked up the toothbrush and hiccupped my way through brushing.  Then through dressing and packing.  Ann & I headed down for breakfast; we asked for a quiet table away from other diners.  These industrial hiccups travel!  We ended up in the same booth set back from the corner that Dan & I ate at last night.  Kismet (well, maybe.)  Half way through breakfast, the hiccups went away!  Go Bacliphen, go quick response!  It is was timely because breakfast was salty (I need salt – chemo sucks it out of my body) and I was mega-thirsty (I need fluids – chemo needs flushing.)  Big breakfast in the tummies, we headed over to the infusion room.  I have a corner chair again (oh lucky me!) lots of sunlight.  I’m getting two liters this morning, a couple of hours’ “work.”  Then we’re off to Worcester where it is (not surprisingly) snowing.  I’ll pick this up later.

We’re back in Worcester.  Rudy Dog and Lacey Dog gave us a big greeting.  So did Tweety the canary, but he doesn’t run to the door.  He sings and warbles.

We drove through snow from Boston to Westborough and then, atypically it wasn’t snowing in Worcester!  What has the weather wrought?  No snow or just a dusting in Worcester.  Ok, I won’t argue.  For other than the skiers, this is good news.

What’s bad news is the hiccupping started again on the ride home.  I’m beginning to think that the Gatorade is exasperating the hiccup response.  Gonna email one of the docs and see if water and magnesium & potassium supplements will do the trick.  Hey, when I was in high school, they gave us Vitamin-C pills and Salt pills to keep us going.  Oh, and Metrucal for lunch to keep us thinning.

Ann & I plan to relax the rest of the day.  With the chemicals making their way through my body, I will likely nap (um, pass out) shortly.  Hiccups have (for now) faded away.  Feels real good!

Thanks everyone for you support and concern.

Love…

Richard

February 25, 2010 – Dana Farber Kind Of Day

Good nights sleep last night.  Woke up around 6:00 am, wide-awake, and headed to the LifeCycle.  Rode a strong 24 minutes – felt real good!  Took a shower and chowed down breakfast and my preparatory meds and daily meds.  Finished packing up my suitcase, loaded the car, and Ann & I got rolling to Boston.  Had an easy ride in, just the usual delays around Newton and the I-95 interchange. 

Got my blood work at 10:30 am and saw my doctors around 11:30 pm.  My blood work numbers are all good.  We discussed tweaking some of the side effect meds.  I asked about the pain in my legs and back.  They told me that the timing of the pain indicated that the source is likely my bone marrow firing up in overdrive to replace the white blood cells.  A Percodet shuts down the pain, so we’ll go with that.


Oh, the big news - the cause of the cancer is confirmed to be the HPV virus.  The pathology confirmed what the doctors thought.  HPV based cancer is slow and does not travel. Very excellent news!

We had lunch at the Dana Farber cafeteria, which has a diverse selection of excellent food.  Ann had a chicken breast sandwich and I raided the salad bar: all kinds of beans, dried cranberries, and fresh cut vegetables.  After I built my salad, I noticed all the other lunch choices and thought, “Gee, next time I’ll look around first!”

Currently, I’m in the infusion room.  I’m hooked up to two different liters of fluid and one bag of the first flavor of chemo, Taxotere.  Drip, drip, drip.  Pee, pee, pee.  Well, the chair is incredibly comfortable and they gave me a hot blanket (my favorite part!)  Ann is getting refills and a couple of new ‘scripts at the Dana Farber pharmacy – then she’s going to check us in at the campus’ Best Western Hotel.  Dan took the afternoon off from work and is here to watch the drip, drip, drip.  Well, really to keep us company, which is greatly appreciated.  I gave him my iPhone to take a couple of photos so you can all be part of the experience.  Don’t let the photos fool you (I’m at my least photogenic!), I feel really good.  The chemo will start to hit me tomorrow, but right now I feel on top of my game!

Hey, Rozzy – how’s the cap look?  I fit right it here at Dana Farber.  You gotta take the walk by the cafeteria – they have an autographed baseball and jersey (including Ted and Yaz) collection beyond peer.

Time to sit and wait and sit.  Cisplantin with all its side effects is next, then they’ll hook me up to the 5FU pump, give me another liter of fluids and my favorite, the diuretic.

Love…

Richard

February 24, 2010 – Getting psyched for chemo

Had an odd night’s sleep.  Slept well but my legs and back were bothering me – aching almost like cramps.  Woke up at 5:15 am (my pre-cancer treatment daily wakeup time), puttered around until 6:00 am when Ann woke up and then went and rode the LIfeCycle for 24 minutes.  My guess was the lack of activity was causing the aching.  The bike worked like a charm.  Bike, breakfast, and it’s time for nap.  Good Morning!

Today we’re packing up for a two-day trip to Boston’s wonderful Longwood Medical Campus.  Beth Israel Hospital is around the corner, but the Longwood campus features Dana Farber Cancer Institute, Boston Children’s Hospital, and Brigham & Women’s Hospital – all connected by bridges, all bright and welcoming.  There’s even a hotel and food court connected to the campus.

Tomorrow morning, I get some blood drawn (a trip to Dana Farber wouldn’t be a trip to Dana Farber without a little blood), see the oncology team, and then head over to the infusion room to start Round Two of chemo.  This time, after having near six liters of fluids pumped into me plus a diuretic, I don’t need to endure a ride back to Worcester fraught with pit stops.  Instead, we’ll walk over to the hotel and stay there, which will be far more comfortable.  The next morning at DFCI, they’ll give me a couple of liters of fluid to flush my system and then we’ll be on our way back to Worcester, well rested.

Maybe I'm naive or foolhardy, but I have no anxiety about Thursday's chemo treatment.  I understand that I'll have a couple of rough weeks, but I've been there before and came back.  I also realize that I started my first chemo treatment stronger physically than I am now and the therapeutic effects are cumulative.  The bottom line is chemo is no stranger, rather a friend that has to hurt me to heal me.  If I don't fight it and do my best to get along with it (go with the flow in hippie talk) my days will be lighter.   A week from now, I may not be so cavalier, but this is how I feel today.  Relaxed.  Good to go.  Bring It On!

Had a visit from nephew Eric today.  He is in town on business.  We talked music (including his new band and recording project) and film.   Then I filled him in on the Sher family, specifically Yussel, an artist in oils and charcoal, and a mentor to me as a young poet.  Yus was a beatnik, a denizen of Greenwich Village, and defied convention.  Thought it would be good for Eric to be well versed in all the family history!

My back and legs are aching again.  Will ask the docs tomorrow what they think.  If this is a side effect, it is a late blooming one, though I did have lesser aches when the chemo was doing its most intense work.  Then again, I was on painkillers for my mouth, so who knows?

We counted all the meds to determine what refills are needed.  I start the steroids tonight.  Time to finish the packing.  Tomorrow morning, we head to Boston. Onward!

Love…

Richard 

February 23, 2010 – Documentation Day

If Dana Farber’s infusion schedule hadn’t changed, I’d be hooked up to the chemo infuser at this moment.  They switched the day to Thursday, so I have a two-day vacation.  I’m wondering what the cumulative effects of chemo will be.  I feel good but not nearly as physically strong as I felt before treatment one.  I’m not concerned, more curious.  Whatever it will be, I’ll take it a day at a time and work my way through it.  My guess is that I’ll sleep more.  I understand how to use the meds and the flow of the twenty-one day cycle.  In a couple of weeks, I’ll be more than half way through chemotherapy.

Spent most of the morning and some of the afternoon documenting A&D’s General Ledger Rollover procedures.  My head is clear and I felt in full control of the task.  I did the rollover as I documented it.  My surprise is how much the concentration took out of me physically.  The lunch break really helped get me revved up again.  This is a lesson in managing my energy level.  I am pleased how concentration trumped fatigue this morning.  And I’m pleased how my mind and body bounced back after lunch.  It feels wonderful to be productive.  It also feels like a nap is in order.

Had another great night’s sleep last night.  The whole process of the treatments involves learning to make adjustments.  I have a new body and the mind/body communication is a foreign language.  Understanding that conventional reactions are no longer appropriate, I explore new ways.  With the second chemo treatment, I’m sailing more familiar waters, but the weather is unpredictable! Bring It On!

Love…

Richard

February 22, 2010 – Driving on empty

Had another fine night’s sleep, especially fine because today was a busy day.  A bit after noon, Adam & I left for Boston.  Ad’s flight back to Denver left from Logan at 2:45 pm and I had a hearing test at Brigham & Women’s Hospital at 2:30 pm.  Ad and I had time for insightful conversation and music as we navigated The Mass Pike (I-90 for you foreigners.)  It’s always hard to say goodbye, so we said “see you in March” instead.

I made the drive from Logan to Brigham & Women’s with plenty of time to spare.  My audiologist is seven months pregnant and very happy (expecting a girl, has a 2.5 year old boy – 3 years is a great gap, we agreed.)  The purpose of today’s hearing test was to determine whether one of the chemo agents – Cisplantin – has caused any hearing loss.  Over the past ??? years, I’ve lost some of my high frequencies (remember those concerts in college after which our ears would ring for days?  I can’t forget them now.)  After two years of Ann’s suggestions (takes me a while to hear sometimes), I tried hearing aids (so I “carry” two more computers daily.)  Ann (as usual) was right.  I was stubborn.  My loss.

Note aside to non-believers: hearing aids work and are worth every penny and every minute adapting to them.  Not only can I hear conversations in a crowded room clearly, hear high frequency beeps such as electronic alarms, I can hear music again.  I never realized what I was missing.  One of the first CD’s I spun with the hearing aids was Miles Davis’ In A Silent Way.  Tony Williams’ drumming was a revelation. Instead of settling (unknown) for the muddy thumps, a full range of tone and pitch assaulted my senses.  I could hear the intricacies of the top hat and cymbals.  Return of the treble! Then Miles kicked in and took my breath away.  Again.

Back to today.  I was concerned during the hearing test.  The drive into Boston had tired me more than I expected (which was not at all.)  I had trouble focusing and concentrating (not to mention staying awake.)  But the audiologist came back smiling and told me my hearing was unchanged.  Good news.  I mentioned the lack of focus, and she joshed “Gee, I can’t imagine why.”  Yeah, Cisplantin and its friends Taxotere and 5FU affect more than just hearing.

As I got ready to drive home, I realized how beat I was.  Brigham & Women’s has an Au Bon Pain in its lobby, so I stopped for a “snack” – some might say a meal.  I felt a bit better.  It was still a long ride home and I was so glad to pull into our driveway.

Originally, my second chemo cycle was to start tomorrow, but Dana Farber gave me a two-day vacation by switching my start day for the next two cycles to Thursday.  I’m good to go.  Will spend the next two days eating and getting stronger.  Thursday is Bring It On day.

Rozzy – thanks for the wonderful surprise.  Forgot to tell you: Dana Farber has an amazing collection of Red Sox memorabilia spread throughout the facility.  Near the 11^th Floor phlebotomy room is a photo of Ted Williams taking his first at bat in Massachusetts as a professional ballplayer.  It shows him swinging against the backdrop of Fitton Field and Holy Cross College, a mere five-minute walk from my office!  It was an exhibition game against the Holy Cross nine.  Serendipity.

Love…

Richard

February 21, 2010 – Sleep sweet Sleep

Finally, a full night’s sleep!  Fell asleep at midnight and didn’t get up until 9:39 am!  For some reason, I feel different today.  Rode the LifeCycle for a steady 24 minutes.  Staying strong.

Yesterday, Renee & Marshall came to visit.  Renee brought her Particle famous chocolate chip cake and a bunch of Middle Eastern goodies (real food).  We had time for conversation and embarrassing stories from my childhood (great future fuel for Adam & Dan.)  Not to worry, Eric is coming to visit next week and I’ll find a few Renee stories to tell him!

The twenty-one day chemo cycle is a real roller coaster ride.  All along, I’ve felt ready and willing for the next infusion.  Today, I feel ready on a different level, Bring It On ready.  The difference is that I was willing and able for the next treatment.  Now, rested and with a “sweet” week behind me, I’m geared up and ready to roll.  One chemo cycle down, two to go!

Radiation looms on the horizon, but it’s beyond my vision.  Thinking that far ahead is far from productive.  I’m confident that I will be Bring It On up and good to go when the time is here.

Grandpa Bill (Ann’s Dad) came to visit today and we ordered in from Blue Jeans Pizza, though none of us had pizza!  Good to see Bill, first visit since my chemo treatments started.  Then, I drove over to my parents’ with Rudy Dog. Again, haven’t visited with them since the start of my treatment.  Daily phone calls keep us close, but being in the same room is incomparable.

Ok, busy day.  Time for a nap.  Thanks Arlene for the phone call.  I always feel so energized after our conversations.  You are my hero!

Love…

Richard

February 20, 2010 – Challenging time for insomnia

I thought after a strong bike ride and full day that I would fall into a deep sleep last night.  Not so.  I guess insomnia will be a way of life until chemo starts up again.  I’ve decided not to fight it.  I’ll sleep when I can and be sure not to tire myself out.  My body is in an unconventional state and I can’t expect conventional solutions to work.  Like stomach, like sleep.  I’m going to ask the doctors whether insomnia is common late in the chemo cycle.  Then again, I’m one for the less common side effects.

Sent my friend Rozzy a reply to her email and decided to include it here.  Sums up much of what I’m feeling.  Rozzy is a spiritual woman, so she brings that piece of me out:

“Cancer is a test of faith.  I believe that God put challenges in front of me when I am ready for them whether or not I think I am ready.  My perspective has been altered by this disease in a positive way.  I am so much more into the moment than ever, humbled by and grateful of all the wonders in my life, and able to face adversity with a grace and courage I never knew I had (but hoped I would.)

Please don't feel sorry for me.  I don't feel sorry for me.  Life is a package deal.  We get our blessings and we get our challenges.  That is a comforting balance.  Cancer teaches and cancer gives while it takes.  I firmly believe that I will be a better human being because of this experience.  I will have something of value to share.  My dear cousins Arlene and Betsy have fought and are fighting this disease.  They are my heroes and my guides.  I hope that when I come out the other side, I will serve others as well as they have helped me.

One thing about cancer, you feel the love and support of family and friends in a unique way.  That is an indescribable blessing.

My faith tells me that in the end this whole experience will be a gift.”

Busy day today – Dan & Adam are here for the weekend, my sister Renee plans to visit this afternoon.

Hey – I’m finally getting the benefit of chemo.  I wrote about my smooth shave yesterday.  Well, my head is still baby bottom soft!  This morning, I discovered another bonus.  My wild and wooly eyebrows don’t need trimming and I can pluck them oh so easily with my fingers!  Wonders never cease!

I had my first outing since the start of chemo.  Ann, Dan, & I had lunch at El Basha on Park Avenue, fine Lebanese food.  Usually, we just go there for dinner.  Dan & I ordered falafel sandwiches ($5.00) and for another $5.00 they added an El Morocco salad (full size) and a bowl of lentil soup.  Ok, easily two meals for me, so I saved the soup for supper.  After lunch, we went to Big Y to pick up a few groceries.  Yeah, big fun in the big city!  Yeehah!

Love…

Richard

February 19, 2010 – Feeling back in the saddle

Managed a decent night’s sleep and that feels good.  Went to see Psychologist Doug yesterday and we talked about my insomnia.  He gave me a relaxation recording, a technique we’ve used in the past, and it worked well even as my brain fought it.

Woke up hungry and have been eating ever since, lots of mini-meals!  My stomach renewed our truce, which is very cool.  I am learning to understand my stomach’s new language, as it will not learn mine.  Fair enough.

Between lunches #2 and #3, I rode the LifeCycle for 24 minutes at my pre-cancer intensity level.  I felt good, back in the saddle, loose and easy.  Considered (briefly) continuing to my pre-cancer daily time of 36 minutes but deferred for two reasons.  One, I may regret it later and I have a sordid history of pushing my PT into extreme.  Two, when I told Ann I rode 36 minutes, I would regret it immediately (both the riding & the telling, but the telling is honest.)  I rely on her for many things, one of which is being the governor on my exercise engine, another for being smarter and possessing common sense.

With a 24 minute ride, I had adequate time to shave my head.  My ideal LifeCycle ride includes:  ESPN or NESN on the TV on mute, my iPod playing a mix of new and favorite tracks in random mode, and my razor in my hand shaving head and face (who needs a mirror?)  Last week, I stopped shaving my head; when the chemo was in its active phase, the skin on the top of my head thinned out and became too sensitive (my face was fine.)  Today’s shave felt wonderful.  The week’s growth slid off smoothly.  Hey, one thing about chemo, I get a great head shave!  Feels smooth as a baby’s bottom with minimal effort!  Hooray!

I’m hopeful that the longer workout will trump my insomnia.  Pre-cancer treatment, my day began with the LifeCycle at 5:30 am, followed by breakfast, and work.  By 9:00 pm, my body was ready to sleep.  So, between today and Thursday (next chemo infusion), maybe I can get that slice of life regular.  It will make me stronger for the coming treatment, stronger and happier – maybe even my stomach!

Love…

Richard

February 18, 2010 – Good time for insomnia

First, one more haiku, from BeJae who taught me lyrics are verses that hang out in a bad neighborhood:

Fox to alien:

Though grateful for your teachings

I will not miss you

Overall, I feel good.  I went into work and completed the financial statement for January.  My brain seems to be kicking me on all cylinders.  The current challenge is insomnia.  Generally, I sleep from 9:15 pm to 5:15 am – like clockwork.  For whatever reason – oh say all the drugs including the chemo that I’ve ingested this month and suddenly (happily) stopped – I’m tired at night but don’t fall asleep easily.  My conventional approaches to inducing sleep are not effective.

The conclusion I reach is that my body is not in a conventional state and I cannot expect conventional techniques to work.  I have an uneasy truce with my stomach (until chemo starts next Thursday); likewise my brain and sleep rhythms and I have to get on the same page.  I have a relaxation audio to try tonight.  If I can’t sleep tonight, I’ll probably get up and read the memoir I’m crawling through.  It is interesting but dry.  Three chapters when exhausted leads to sleep.  I’m hoping to find a better way.

Adam arrived last night around 11:30 pm.  Originally, I thought I would be in deep sleep by then, but it was good time for insomnia.  Both wide awake, we sat down and talked.  Adam looks wonderful and happy.  I’m really looking forward to this weekend with all four of us being together.  Dan will drive in after work tomorrow.

My brother Alan brought lunch in for Ann, Ad, & I.  It was wonderful to sit, talk, and relax.  Lunchtime made the day special.  Family and friends reaching out eases the process of the treatments.  (Thanks again, Alan!)

For those of you wondering, Lacey now has her tinkle trousers and they are excellent!  (http://tinkletrousers.com)  They are the perfect solution for a sweet old dog with dementia (can be used on cats too, but good luck with the claws & teeth!)

Love…

Richard

February 17, 2010 – Haiku Bridge Break

It was Haiku yesterday on the Webster70 listserve, so initiated by the big teddy bear, artful dancer (you want to be on his dance card), and SPAMku kahuna - Oyra.

Oyra sounds:

Alien subdued

Fox returns to cold storage

Webster College sighs

I resound:

Round one nears the bell

I regroup as alien reels

Whose will is stronger?

Oyra responds:

Enjoying his food

1 800 eat veggies

Fox is on the town

Sweet Paula, Prom Queen and Renaissance Woman, chimes:

Foxy outfoxes

Alien allayed and down

Cunning man eats, smiles.

Last night, I had an intense craving for Blue Jeans Pizza’s ziti marinara with a nice vegetable salad, balsamic vinaigrette.  We called and ordered in two.  I ate half my usual portion, which means a regular human portion.  (To be fair, while waiting for delivery, I gulped down a soy yogurt and a Boost.)  I can’t remember pasta tasting this divine.  My stomach still confounded me.  I think it was happy – for sure full.  Maybe I should try alphabet soup.

My sleep cycle, post medications and chemo roller coaster, is still confused.  In my prior life, I went to sleep at 9:15 pm and got up at 5:15 am.  Last night, as the night before, I tossed and turned a bit, tried a relaxation technique, and though tired, would not sleep.  I’m reading a dry memoir, so I tried a couple of chapters.  At 11:15, my body finally said, ok, we’ll sleep now.  I did have a power nap after working yesterday, so today – no nap!

Today I was stronger at work, my focus sharper.  I finished all the procedural work on the financial statement and everything looks like it ties.  Tomorrow, I’ll put the formal reports together, but my confidence level in the numbers is high.

Chemo is an amazing process.  The immediate side effects crept up on me and then hit.  Last Thursday, during the working side effects, I wondered if and when I’d be able to get back into the world.  Today, I feel somewhat normal.  My energy level is down, my brain is operating at reduced capacity, but I feel good.  Even my stomach seems to be regaining its lingual acuity (shh, don’t tell the tummy!) I will ride the bike in an hour or so.  Keep moving forward.

Ann & I are planning a three-day getaway during the recovery week of my next chemo treatment.  We’ll head to Chatham on Cape Cod; ocean views, hopefully warm enough for beach walking.  Ann lost her vacation to my treatments, so she’ll get a little beach time this way.

Got get-well artwork from Brady and Dilan! Woo-yeah!  Thanks, guys!

Thanks Don, for encouraging me to write this.  It is good to write daily, no excuses!

Adam arrives tonight!

Love…

Richard

February 16, 2010 – Two weeks and to work

I took my chemo dose two weeks ago today, though the 5FU was hooked up for five days.  Been though the active chemo, the immediate side effects, and the “working” side effects.  Now, I’m experiencing the post side effects which is my favorite stage, at least so far.  My appetite is back. I am hungry, eating larger small meals.  I lost about 8-9 pounds that the doctors figure I’ll put back on this week.  Oh boy, you know what that means.  Guilt free eating also know as (aka) free range eating.  Aka by me.  There are odd things.  My stomach now speaks a new language.  All these years, we’ve understood each other perfectly and now it speaks Japanese!  

It says “!@#$%^&” 

and I say “Huh? You hungry buddy?” 

“)(*%^&*$”  

“Ok, no. Full?” 

“)(*%^&*$”  

“Ok, no. Empty?” 

“)(*%^&*$”  

“Need to poop?” 

“)(*%^&*$”   

“Ok, let’s try some more Tums. They have calcium.  Calcium is good for bones.” 

"#&$$%^&^  ^^$^$  #$%^&*!~”  

“Ok, we’ll talk later. Huh?  Oh, you’ll talk later.  I’ll listen.  Gotcha!”

My next two chemo series start February 25^th and March 18^th.  Then, we’re on to radiation prep.

Went into work for 2-3 hours today.  Time flies when you’re having fun and I was.  Good to be back in my office in my chair.  My office is the last down the hall, out of traffic, isolated in a sense.  Don’t worry, Mom & Dad, I stayed a distance from everyone and used lots of Purell.  It was fun to hear the laughter, the voices talking, the machines rumbling over the freezer floors.  Better to see everyone – Casie is engaged and very excited (well, we all are for her.  Young love!) I hoped to complete the financial statement for January, but we made some logistical changes before I left and I spent a good portion of my time hooking up files.  I ran all the reports I` need and tomorrow, I can get into the meat of the statement.  If need be, I can finish on Thursday.

Cool news – Adam arrives in Boston on Wednesday night.  Dan will pick him up at Logan around 10:00 pm.  Ad will take a train to Worcester on Thursday.  Will be wonderful to see him, wonderful to have the whole family together for a long weekend.  Thanks, Ad!

Love…

Richard

February 15, 2010 – Mouth/Throat Pain & Percocet

Back to the battle for Richard’s throat, tongue, sinuses, and mouth.  I watch The Military Channel on occasion – great planes/dogfights, great commanders, and general history.  I imagine now a map of my mouth and throat, with perhaps the tongue playing the part of a pliable river.  We see the enemy entrenched at the base of the tongue, forward units in the lymph nodes.  The enemy is brilliant on the level of the cell, but its strategy is straightforward.  And ongoing.  My forces are chemo now with the radiation units saddled up and ready for the next stage.  The three types of chemo show its’ assault with a different color wave, maybe even a flag standing by each.  All three do their job, all three pincer the growths.  They have the bad guys in the lymph nodes on the run.  The battle for the base of the tongue is in its planning; the radiation commanders drill their troops.

In every battle, there is collateral damage.

I’m dealing with at least three kinds of mouth pain: sores on the lips, cheeks, and other soft tissues; sores on the gums among my teeth; sores on and under my tongue.  The sores have a few challenges.  There is general pain.  There is pain from trauma - even a direct hit by a blueberry skin is no fun. Then there is pain from muscular activity – as in swallowing, talking, and swallowing. The sores on the tongue seem to affect long tissue, the strings that make movement.  When they hurt, it’s no fun.

I eat a soft diet (scrambled eggs, cream of wheat, hummus, soy yogurt, etc.), but even soft is painful on the tongue.  [Note: I now understand the difference in sensation from my throat and tongue.  Who’d’a guessed it?]  I drink gentle fluids but even a dime of saliva can hurt to swallow (let’s not go into spitting - believe me, it’s no fun!)

So the primary drug of treatment is Percodet.  At its best, I can eat and drink comfortably.  At its worst, I eat and pound my fist into my thigh (mature, huh? hey – all those hours on the bike are worth something!)  I use Magic Mouthwash topically in between pills, do my rinses, etc. but Percocet makes the difference whether or nor I can eat.   However,

When I’m blue, the Percocet makes me feel ok.

When I’m green, the Percocet makes me feel ok.

When my mouth stops hurting and I stop the Percocet, I still feel blue and green.  Time to buck up and nap, ride, write, read my way through the blues and greens. 

Sometimes good side effects are bad.  No problems here. Awareness.  Use the drug as it intended.  It is a tool.  I don’t want my chemo soldiers running through the streets in a daze.  Except for the victory lap several months from now.

One more lesson cancer has to teach.

I will need a feeding tube for radiation therapy (oh, joy!) Once the frontal assault on the primary tumor (or Mother Ship) begins, swallowing will become very difficult, though it will be important that I keep the muscles working.  Chipped ice, I’m guessing.  For now, I need to keep the swallowing apparatus functioning full tilt no boogie.

I haven’t said this often enough or LOUD enough.  Ann is a real rock through all this.  I’m going to have my bad days and off moods.  Ann knows what to say, when I need a buck-up, when I need to rest.  She knows me better than I do.  Isn’t that love? She makes me scrambled eggbeaters whenever I ask.  She reads me and fills in the gaps.  I can’t imagine going through this without her.  I can’t image going through anything with her.  I love her.  She’s my best friend.

I live in now, day to day, hour to hour.  I can’t let myself go out farther, not even to next week; that may lead to Overwhelming Street, a neighborhood I must avoid. 

Onward Cancer Soldiers!

Love…

Richard

February 14, 2010 – Valentines Day Sunshine

Happy Valentines Day, All!  Hope your teeth are thick with chocolate, your lips chapped from kisses, and no one in your class stiffed you (at Flagg Street School, we each decorated a paper bag, then counted our one piece and occasional folding valentines.  Some of us got stiffed.  The lessons learned in 4^th grade are different than in Kindergarten!)

Today is a real treat.  Dan arrived around 11:00 am.  We’ve been hanging out, watching The Olympics, eating a bit.  I took a break and road the LifeCycle for 18 strong minutes.  Dan took that time and visited my parents.  Dan’s turn to do software support for Papa!

Overall, I’m doing well today: more energy, less pain, longer periods of feeling “normal.”  My appetite is up, but I’m being careful to eat only small portions.  The sun is shining and the dogs are fighting over the popular ball of the moment in the backyard.

Tomorrow is Monday.  I hope to be able to go into work for part of Tuesday, Wednesday, and/or Thursday dependent on white blood cell count, energy, and clarity to drive (no meds.)

Thanks all for you notes today.  Keep your eyes on the horizon, Bill – I believe in you!  That goes for you too Prom Queen. Good luck Laura, got Tuesday on my calendar and in my heart.   Talk to you soon! 

And thanks for the Sorbet and Whole Soy Co. yummy yogurt!

Love…

Richard

February 13, 2010 – Crock or crack?

It’s like I’m a crockpot or something (hopefully, not the third one you got as a wedding/shower/housewarming gift and store next the spiders in the basement, though I’m a fan of spiders.)  They set me to the proper temperature, added a couple liters fluid, then a liter Taxotere, a liter of Cisplantin, and then a diuretic before hooking up a 5FU pump for long term seasoning.  Wait a day, add a couple more liters of fluid.  Take off the pump after five days and move on to advanced seasonings to taste – anti-nausea, anti-hiccup, pain pill and pain wash.  Now I simmer.  Occasionally, I jump up and down to mix.  Then the dogs will cannonball my gut just to be sure it’s all bubbling.  I’ve got a chemical stew to brew.

Humans process food in food out as a matter of survival turned pleasure (why else Vietnamese spring rolls, portabella mushrooms, pizza my way, etc.)?  It is a finally tuned miracle.  Just now, Dana Farber has repurposed this fine tuned system.  Another miracle.  I’ve always believed that science is based on the observation of natural  forces and then hopping on for the ride.  I’m crockpot runnin’ down the road.  I’m a crackpot runnin’ up that hill.

Lazy day.  Larry & Lora are bringing in dinner (Pho Dakao – this is Worcester.)  My white cell counts are still low, so we need to stay in and away from crowds. I’m about to take (another) power nap to be ready for the evening. I have wonderful friends.  But you know that!

Hey Jonny Loomer – thanks for the new tunes!  (Curious ? – hit MyStore) Picking my day up!  I now have a strong playlist for my nest chemo session.  Boogie with the bags and hoses.  The “new” Hendrix will out by then.  Who says there aren’t many reasons to look forward to chemo?

Love…

Richard

February 12, 2010 – Turn ‘round day

Just a short update today.  Feeling stronger, rode the LifeCycle for 18 fluid minutes and crept underneath my shower head for a sensational hot shower.

There is a battle going on and the battlefield is my mouth, tongue, and throat.  (I’m spit spit spitting thanks, Jeff.)   Which, since the primary tumor is at the base of the tongue, makes a lot of sense.  I’m more observer than participant.  The cancer has dug in and the chemo is attacking.  Like any battle, there is “collateral damage” (oh, I love that phrase) and that damage is wrought on me.  I’m not complaining rather stating the facts.  The chemo is on my side but it has a distinct and harsh job to do.  My doctors have given me a shelf full of potions to ease the pain.  I’m learning the best way to use the meds.  And you know what, they make me want to nap!

I understand now that during this middle week of the chemo cycle, I need to take a pain med as soon as I wake up.  I need to use the big swatter instead of taking incremental steps that lead to the swatter after a couple hours of pain.  With the pain, I can’t eat or drink and that is bad.  I need protein, calories, fluid.  Those three are the priority rather than some notion I have that I should avoid the la la land.  It’s a battle in there and I’ve got to use the weapons at my disposal.  This isn’t a boo boo on my throat, it a real tumor.

The sun is shining again today.  It’s a toasty 29°F here in Worcester.  We have a dusting of snow on the ground, just enough to bounce the sunlight up into the trees.  No shadows on the pines. Today is peaceful in my backyard and living room.

But there is always a war going on.

Love…

Richard

February 11, 2010 – Dr. Deb and the Dana Docs

Last night, I received a phone call from Dr. Deb, our PCP.  Deb’s first concern was how I was doing emotionally and how I am dealing with chemo and its side effects.  We spent most of the call talking about me the person and then moved onto medical matters.  We love Deb; she treats the whole person, and in our case, the whole family.  I appreciated the phone call, its tone and purpose, the caring expressed, and knowing that Deb is there for Ann & I.  People have diverse reasons for choosing a profession.  Deb is a highly skilled doctor for all the right reasons.

Last night after a couple of hours sleep, for whatever reasons, I had my worst nausea.  Deciding that sitting up would be most prudent; I went into the living room and played with my computer.  I caught the night owls on line.  I made Marshall laugh.    In retrospect, that may have been the beginning of the low point for this chemo cycle.  My energy level today is not great, but I’m hoping that tomorrow I’ll start ramping up to “regular” activity.

Today, Ann drove me into Dana Farber for my mid-cycle checkup.  I’ve lost a little weight (which they think will come back next week), but my vitals are strong.  Saw Dr. A first and we went over my week and adjustments to living with chemo.  Dr. H arrived and began to examine my lymph nodes.  A smile crept on his face as he said that he could barely feel them!  Ok, major boost!  The chemo has started doing its job.  We still have to finish this chemo cycle, then two more chemo cycles, followed by the seven weeks of radiation treatment.  Still a long road ahead and no guarantees, but I can draw on today as we move forward.

As we move forward. Thanks everyone who is on this ride with me.  The cards (Amy, your script is so beautiful I almost don’t want to open the envelopes!), calls, and little surprises keep me feeling up and my thinking in the right hemisphere.  I love and cherish all y’all.

Love…

Richard

February 10, 2010 – Magic in the mouthwash

Today marks one week and one day since I began chemo.  I’m told that this will be my low energy week.  Had intended to ride the LifeCycle for 24 minutes, but my body said “no, 12 minutes.”  I always have this debate between body and exercise, debate as in the former has no vote.  I listen to my body today.

I’m on a second antibiotic because my port got a little puffy.  So now my stomach is the staging ground between diverse packs of chemicals.  I can tell the winner.  Or rather, it tells me.  I listen to my body.

Yesterday, I started using “Magic Mouthwash.”  It’s a pretty pink color.  I taste Maalox, a hint of lidocaine, and some other subtle delicacies.  That is, I taste until I swish and swish and swish.  Then my mouth is a heavenly numb, not frozen, rather there and quite usable (though my speech is a bit off if it wasn’t off already before any of this started.) I use MM a half hour before meals.  It’s not taste; it’s comfort at this point.  I need that protein and those calories.

We have a dusting of snow falling today.  Pretty view when I don’t have to drive in it.

Ann started Steig Larsson’s Millennium trilogy today (Girl With The Dragon Tattoo book one.)  I’m betting that she’ll read all three books by Sunday.  It’s the first series of books I couldn’t put down to exercise – read while on the bike!  Such a concept!

Ann saw our friend & dentist Jeff today.  Jeff sent me some magic toothpaste and advice to “spit, spit, spit, and then spit some more.”  I think I can handle that.  Note to self: use Magic Mouthwash after magic toothpaste.  Spitting with a numb mouth is, well, an adventure!

Val, thanks for the wonderful surprise!

Love…

Richard

February 9, 2010 – Tuesday Noontime Blues in C

Some days, I’m going feel better than others.  Yesterday was a good day.  Today, the hiccups returned (but quickly squashed, though I must focus on drinking this afternoon, ‘specially that luscious Gatorade.)  The side effects of chemo are more apparent.  The interior of my mouth is a war zone with the chemo trumping the quick growing tissue – which is the whole idea, right?  Taste buds are all askew and even the texture of food is foreign.  My stomach is pretty ok, but it does jump about a bit.  “Oh the fun we shall have…”

I haven’t talked about telling my parents about the cancer.  Cancer is no stranger to our family.  That said; I felt a need to protect Mom & Dad until I knew enough to answer most primary questions.  When there is a health issue with my parents, I find out later, either after it’s been dealt with or when long term treatment is necessary.  My parents protect me, so I protect them?

While I was at Mass General being tested to determine a diagnosis, my cell phone kept ringing. Dad. I dropped the calls not wanting to start a conversation I couldn’t finish.  Dad kept calling – I don’t randomly miss days at work and he knows that.

Late afternoon, we had a diagnosis and treatment option #1 in hand.  Knowing my sister works nearby my parents, I called Renee and asked her if she could meet Ann & I at Mom & Dad’s condo.  I didn’t call my folks, just drove the miles from Boston to Worcester, straight to their door.  Renee arrived at the same time, and we all greeted Mom & Dad at once (no, that surprise is not suspicious!)  Dad gently noted that he’d been trying to reach me all day.  We presented the news and my parents were, as always, strong.  Mom alluded to the Snider genes and miscellaneous tumors.  Dad told me I’d be fine (and he has been through so much the past five years.)  The overall theme was calm.  The last thing they wanted was to upset me. 

Whenever I need to discuss something “big” with Mom & Dad, the conversation teaches me that they’ve been there, done that.  They’ve been on this earth 30 years longer than I and those years reflect a wealth of experience.  And, whatever is going on, they’ve figured it out, maybe not the details, but the gist.

This morning, I was thinking of Nana Edith who died of cancer in 1965 when I was 12.  In all my images, she is smiling, even when she came home from the hospital after massive surgery.  I’ll carry that smile today and forward.  And I think of a trip to MGH with Mom & Dad for Dad’s liver biopsy.  It was like we were on a family outing.  I got me some tough genes in here!

Love…

Richard

February 8, 2010 – Super Bowl hung-under!

I watched most of the first half of the Super Bowl with Dan & Ann, dozed in bed for the second half but caught (luckily) the big plays.  Woke up just in time to see Peyton release the ball on the big interception.  Through my cottonball vision, it seems that the celebration for this game is special.  We have the humane thread between New Orleans, Katrina, and The Saints.  But The Colts, the second place finishers (won’t say losers) are exhibiting a lot of class.  It must have been such a trial for Peyton to present Drew with the SB MVP trophy, but he did it with commendable poise and sentiment.

I felt a little “bad” (yeah, ridiculous) drifting in and out of the game (sitting up, lying down, etc.) – like I was the lump on the log, the whisper in the room.  In dealing with this disease, it's Dan and Adam and Ann who most concern me.  It's harder on them in many ways. I remember the feeling of powerlessness during Dad’s recent illnesses.  Gives me motivation to emulate Dad’s courage and grace, to move forward head high.

This morning, I’m being cautious about my food intake.  I should be nearing the end of chemo based nausea.  Part of the issue is that food tastes weird.  Coffee – my sweet vice – tastes off.  Trying to stay off the anti-hiccup med as long as possible.  The med is a knockout drop.  Before lunch, I’m going to ride my LifeCycle – Ann is right, I gotta keep pedaling to keep my conditioning level steady; will help the recovery.

Speaking of bikes, Ann & I & Rudy Dog should be down on Sanibel Island this week, February vacation.  Instead of zipping my Catrike Trail over the bike paths, I dream of pedaling the island sooner, deeply breathing in the natural musk, watching the birds, bunnies, and creatures.  When I lie down, I can close my eyes and find myself lying in the sun near the Gulf, relaxed and refreshed.

Successful 18 minute ride (let’s see if I can ramp that up over the next two weeks!) on the LifeCycle followed by a delicious shower.  Haven’t taken the anti-hiccup med today.  Lunch of hummus, bread, and lots of chocolate soy milk.  Feeling almost human.  Tired but clear.  The sun pours into our living room and even though we’re not on Sanibel, we can enjoy the sun’s warmth and optimism.

We have “Modern Family” on DVR from last week.  The show clicks with Ann & I (interesting…) so we’ll watch the show and laugh.

Love…

Richard

February 7, 2010 – Moderation!

Yesterday, I ate rather optimistically.  Ok, I overate and am paying a bit of a price today.  Ann went out and got me some hummus cups for lunch and that seems to hit the spot.  Still being very careful about the hiccups, so I’m drinking slow and steady, Gatorade and water.  Yum!

Dan is visiting.  I’m not exactly a ball of energy, so we’re watching “MythBusters.”  They just proved that a 44 cal bullet sized hole in a gas tank trailing fuel will not ignite the tank.  Now, they’re trying to see if a car can be destroyed by its sound system.  I sense a theme.

It’s Super Bowl Sunday.  We should have a pool on what time in during game I’ll fall asleep.  Or pass out.

The dogs are showing their innate intelligence, lying on the hardwood floor, basking in the sun.  Maybe I’ll join them!

I’m taking the reading down to a more basic level.  Zoe sent me a copy of Terry Border’s Bent Objects, amazing what the man can do with a little wire and assorted stuff: potato chips, toast, gum wrappers, an egg, etc.  The constructions mostly accompanied by one line comments, but a few have a HOWTO to make your own, and some have a longer narrative. Haven’t lost the plot line yet!  (Thanks, Zoe! meets the moment!)

The Super Bowl “pre-game” is on.  While I’m waiting for my Cream of Wheat to cool (mmmm supper) I’m taking my queue from Chris Chandler (via newsletter) who is contrasting Katrina to the Haiti earthquake.  To be honest, I can’t follow Chris and it sounds tack on, so I’ll try to read it again next week.  To be honest, I won’t follow the TV “pre-game” because it’s been said and said and said.  Maybe if they upgraded the ads earlier in the day?  (Nay nay nay.)

Having Dan visit is a lot of fun.  For me, anyway.  He and Ann can watch me nap between meds.  I gotta remember to take my glasses off before sleeping – have a perfect mold of the sidebar behind my ear!  Dan introduced us to a new show, “Man vs. Food” – this episode for the Super Bowl was surrounded by a Miami 16” x 4” Cuban sandwich, sliced pork, roasted pork, veggies, and some volcanic looking sauce.  Truly big.  A challenge for Rosey.  Don’t think they have the vegan version.  Don’t think I’d attempt it!

Colt picked to win.  Saints the sentimental favorite.  America awaits!

Love…

Richard

February 6, 2010 – Unpump It Up!

Today finishes the first cycle of chemo intake, still have two weeks of chemical activity.  Around noon, Ann disconnected my 5FU (yeah, getting lots of jokes that about name) pump.  After five days, I’m untethered and can get up and walk without reaching to be certain my shoulder pack is in place.  And the big news – a real shower!  Shower power!  All this activity has stimulated my appetite.  Had two Boca Burgers and a can of corn for lunch followed by a nap followed by a bowl of mixed Soy Delicious, Mocha Fudge and Peanut Butter Zig Zag.

Having success with the hiccups.  Per doctor’s recommendation, I’m taking the anti-cup med preventively rather than in reaction to the start of a two hour bout.  So far, so good.  Tonight, Jesse & Susan will bring in real food (take-out take-in bring-away from Pho Dakao) for dinner. We’ll see if the med is up for the test.

Reading is still tough.  In lieu of a novel, I’m reading poetry, or rather the first poem in Karyna MacGlynn’s I Have to Go Back to 1994 and Kill a Girl – there’s a lot of substance in Karyna’s couplets.  Also reading Jewish Spiritual Companion for Medical Treatments brought to me by Rabbi Seth.  Spirituality is essential for this recovery and the myriad of approaches in the companion offer perspective and comfort.

Wonderful dinner with Jesse & Susan.  Pho Dakao has the best tofu in town (bet you’re all salivating now!)  After dinner, we watched the ugliest dog contest on Animal Planet.  Pabst, a mutt, won, but he seemed pretty cute other than an underbite. Pabst had to face up last year’s winner – Rascal (yes, Don) – to take the trophy home.

Only a single hiccup through dinner.  But my head is back in the cottonball and it’s time for a nap.

Thanks for the call today, Arlene!

Love…

Richard

February 5, 2010 – Hiccup & Activity Alert!

Yesterday was hiccup day.  It started after I gargled.  Took the anti-hiccup med and the ‘cups settled down.  Ate my lunch.  Took a long pull of Gatorade (part of my 2 liter per day requisite) and the hiccups came on strong.  Waited an hour and took another med.  An hour later (!), they settled down again.

Ann came home from work and I began to swig Orange Gatorade again (I-Man & Sandy must be proud, though if they ever talked politics, it’d be better than a UF-FlaState football game), which led to more hiccups, another med, and another hour of ‘cupping.  A side effect of the ‘cup med is drowsiness.  And that began to hit me.  So I went off to bed and slept like a drunken baby.

My Mom and I have always had this tendency to hiccup when drinking carbonated beverages.  You may remember going out to eat with me in the days when I cherished stout.   I’d gulp two pints before the food arrived, because mixing food and carbonation led to instant, lasting hiccups.  So, here they lie in wait again.

My mantra for today: small sips, tiny gulps, and wait…

At work, we’re repairing freezer floors.  The jackhammers’ assault and the removal of large squares of material raise a fog of large particle concrete and insulation dust.  Which I need to stay away from.  So, I sit at home and I realize I’ve got to get up and move around.  Originally, Ann and I decided to wait until the 5FU pump was disconnected on Saturday until I tried a bike ride.  Once my head is clearer, I’m attempting a short ride.  This afternoon, Rudy & Lacey Dog have vet appointments.  I may come along for the ride.  The worst thing I can do is sit on my rump or lie down and feel dazed.  Geez, I may start feeling sorry for myself and that would even be more worser, might effect my ability to pound these keys.  And reflect.  Deflect.  Object. And objectify.  Maybe mentally fry…

Laura, you wondered how well DFCI’s clinicians have prepared me for the treatments.  I think they’ve done a good job.  Nothing has been sugar coated and nothing has been fearful.  It’s what I’ve got to do.  I feel trust and care.  The hiccups were an unexpected side effect, but I have to expect the unexpected, too.  And you said to keep writing if I can bear it.  Given the dark source of much of my poetry, how could I not bear?  It’s much easier to write from adversary.  Happy is tough to express – at least, it feels that way to me.   Oh, and the port is working well – thanks, Laura!

Well, off to de-daze de-glaze my brain.  My bike awaits.  Tomorrow, I can shower (finally) but I can sponge today.

---

Ride was good.  12 minutes at normal resistance instead of my daily 36.  Tomorrow, without the 5FU pump, I’ll go for 18, then see.

My head is still in a cloud.  Chemistry was never my strong suit.  Guess the chemo is kicking in.  My sweet cousin Arlene warned me that reading might get challenging on chemo.  I’m in the midst of a book I normally couldn’t put down, Jennifer Egan’s “The Invisible Circus”, near the denouncement, and must take it, like the Gatorade, in sips.

Hopefully, this update is coherent.  I’ll find out in a couple of weeks!

Love…

Richard

Alien update Groundhogs Day Week 2010

February 3, 2010

From yesterday (02/02/2010 - my birthday): First perspective on chemotherapy:

They give me 4 plus liters of fluids plus chemo and THEN a diuretic to make sure I pee?

and pee and pee and pee and pee

and have dry mouth so I drink more so I...

On to today: Second perspective on chemotherapy

Well, me and the 5FU pump are getting along well. It purrs every time it gives me a dose.  We sleep together, eat together, pee together, you get the picture.  Me and the pump are hooked up until Saturday when Ann will disconnect it and clean the port.  I am such a geek.  Being connected to a piece of hardware is not an imposition.  Instead of a beeper, phone, hearing aid, etc. - it's a cute little pump, a CADD-Legacy 1.  I call it legs for short.  Or cad if I'm mad.  Of course, my other devices I could put down, say to dress, or shower, or... But it's all good.

I'm having another manic day, a combination of the steroids (there goes my baseball career) and hydration. Hydration is being hooked up to an IV machine and having 2 liters of fluid pushed down the vein.  I'm on a host of medications to do this and that, so I don't know what's doing what.  What I do know is that I'm feeling good.  Oh, and that steroids are bad - Mark McGuire told me that.  And Manny and David, but Mark is the expert.  Jose I turn off, but maybe he's the honest one.

Dana Farber Cancer Institute (DFCI) is a wonderful place to receive care.  The staff is friendly, gentle, and aware of the personal challenges each patient faces.  The patients are warm and amicable, too.  Most, like me, joke a lot.  There's a lot of laughter in the chemo/hydration rooms.  Not all laughter.  But I see mostly smiles when I meet another patient's eyes.  When I'm waiting around an elevator, someone will introduce themself, say why they are at DFCI and ask, "so what are you in for, kid?"  This fellowship eases the tension and opens the mouths and hearts.

BeJae commented on the mortality issue in an email - here's a clip from my response: The mortality thing is an adventure.  I think mortality and I have come to an understanding - course, it all had to be on my side.  I focus on all I have to be grateful for in my life.  That is a very long list (you're on it! - all of you are on it!)  I see Dan & Ad grown men with good hearts, motivations, and focus.  I used to have regrets.  That was before I caught up with particular Clan Webster folks who knew me & my secrets from then - and before I went though the reflection and self-analysis (call it de-bullshitting and ridding of secrets) that I needed to do.  I used to look at my college experience and think that I could have worked at it with more, full effort (it was easy to get by) and been able to do more.  [Aside:  what I really wanted was to share my life with Ann; think I knew that, just hadn't met her!]  My Webby buds say Nay Nay - you were always up to something creative, artistically and/or academically - seeing a different way to look at things, be it a landscape, a verse, or Public Policy Analysis. The looking inside taught me to focus also on the good of my decisions - to understand that there is a range in all things, in all experience, in all emotions.  If I feel something, it's not "good" or "bad" - it's my body saying "hello - there's something going on - pay attention!"  I used to think anger was all bad.  If I feel scared now, it's my body telling me to gear up to fight. And fight I will.

My current treatment schedule:  First, three chemo series, each 21 days long (first week infusion, second week it hits me like a brick as the chemicals do their thing, third week recovery - I'll understand this truly in a couple of weeks or so), about 3.5 weeks.  Second, imaging and development of radiation plan.  I've been told that the chemo is a tool but that radiation is the cure.  So my PET scans will help devise the plan.  Also a big of preparation (feeding tube, etc. because swallowing will become difficult and I need to nourish.)  Maybe 1-3 weeks. Third, 35 radiation treatments, five a week Monday-Friday for seven weeks.  I'll take 'em a day or an hour or a minute at a time.  It's what I've got to do to get better.  And I plan to get better and have my life return to its normal mundane (ha!) pace.  Again, it's all good.  I grow from experience and astounding lessons await here.

Oh, one more.  I was talking with Psychologist Doug about all this.  He pointed out the steps in coming to grips with this experience.  We started with acceptance and denial.  I laughed and said that I got those two out of the way in the first five minutes.  When the original ENT doctor examined me, he said "but you knew they (the tumor, the swollen lymph gland) were there" (I thought a throat boo-boo of some sort, but yeah, I did know they were there) and "we're scheduling you for a biopsy to see what kind of tumor you have.  Here, hand these papers to my secretary and she'll set everything up."  In the few steps from examining room to the secretary's desk, I got real light headed, managed to place the papers on her desk before fainting.  Yeah, I do that.  And without a tight corset.  So those five minutes on the floor, I adjusted.  No denial.  Accept the battle that lays ahead.

Waiting for a treatment plan was hard on Ann & I.  Now we go forward.

Thanks all for the cards and emails.  They mean a lot.  I appreciate all y'all have to say.

Love...

Richard