March 31, 2010 – In like a lion, out like a lamb

I had another fine night’s sleep.  Woke up around 8:30 am in my current morning punk funk.  I feel great in the afternoon and evenings.  I know I’ll feel better as the day progresses.  Just got to get there, to figure out the route.  Slogans work for me.  So I kept telling myself “Keep Busy” and “Push on Through.”  I had a Boost with my first handful of meds then did my email and web sites check.  There was miscellaneous household picking up and putting away to do.  I found the cables that I’ll need to transfer the data from Ann’s old computer to her new one.  Checked my list of phone calls and made the first two on the list.

My body felt different today, so I spent a little while listening to it.  My stomach was crying for food, but more of a snack.  Instead of making a double portion of Cream of Wheat, I toasted a piece of white bread and covered it with blackberry jam.  It hurt to eat the toast; had to find the less damaged areas of the mouth to chew and swallow.  Took a long time to get that slice down.  My reward was a swig of Magic Mouthwash, a totally numb mouth.  Today, my body said “take a morning nap.”  Rudy & I hunkered down on the couch and fell into deep sleep.  An hour or so later, the phone rang.  I woke feeling pretty good.  I’ve only felt better as the day has moved on.

Keeping busy!  Ann was ready to set up her new computer.  One of my favorite computer acronyms is NASAIS – not as simple as it seems.  Generally setting a new Mac and transferring data from the old machine is a breeze.  Today had a big curveball, which really was good for me.  Computers don’t frustrate me.  They give me high level puzzles to solve.  I had to call Apple on this one.  Ann’s MacBook does not have a firewire port (transferring the data is the only time she’d ever need it), so we had use Ethernet.  There is a glitch with the automatic transfer, so had to set up the machine, download and install the OS updates, and then manually transfer the data.  It’s still chugging.  I’m like a cook, smelling the broth now and again.  It will feel good when the new machine is up and churning.  The new MacBook is an elegant little box.

Mouth sores have fuzzy logic.  Each round of chemo, I’ve had one that is perfectly placed for pain.  This cycle, the sore sits a little below my lower lip where my front teeth normally rest.  It’s in a can’t miss zone.  This too shall pass!

Tonight, I’ll again go to sleep with positive thoughts about the morning.  In the morning, I’ll see where I am.  If it’s bumpy, I keep busy.  I do know that one of these mornings, I will wake up and feel up, ready for the day.  Until then, I work the moment.  Cancer has many lessons to teach me.

Thanks for your support and for here being with me.

Love…

Richard

March 30, 2010 – Keeping busy…

I went to sleep last night with the thought in my head that each day is going to be better.  Yesterday was the crash day after coming home from the hospital.  Today with a day of rest on the books, I would be stronger.

I woke up working to shake the cobwebs out of my head.  Had a Boost and my first meds, sat down and checked email and favorite sites.  Wasn’t feeling great.  Morning is the most challenging time of the day.  Instead of making Cream of Wheat right away, I decided to wait until my stomach said “feed me.”  Over the past few weeks, I have accumulated a list of home office chores.  Started at the top of the list and took each task on.  Nice feeling to check each one off.   As I kept busy, I felt better.  I took the focus off of chemo and put it on accomplishing small chores.  My small list spanned over two hours.  I was hungry and made Cream of Wheat while finishing the last two items on my list.  Ate my cereal and decided I’d earned a nap.

One of my chores was to try to fix Ann’s laptop.  It’s off its three-year warranty.  Trying to repair the most visible issue, I discovered a couple of larger issues.  Decided that the potential cost of fixing the computer versus its value once repaired didn’t justify the repairs.  A new item was added to the list (a fun one), get Ann a new laptop.

As Rudy & I tried to nap (I was tired but less fatigued – keeping busy did the trick), Ann phoned me from her office and we decided to do a Best Buy and library run.  Best Buy is a fun store.  It’s prudent to have a firm list in hand when entering those doors.  There were two models of MacBooks that fit Ann’s criteria of a 13.3” screen.  After playing with the two, she picked the MacBook.  We’ll set it up tonight and move all her user data over from the old machine.

The last week or so, a gradually louder howling has been emitting from behind the television.  I traced the source to the fancy surge protector all the components are plugged into.  While at Best Buy, I picked a simpler model.  It’s all gray, instead of a rainbow of colors.  I think it will still work fine.

We made the drive through unusually slow traffic to the library.  Ann dropped off a couple of books and picked up one we had on hold.  The drive home in heavy rain and heavy traffic was not a lot of fun.  Worcester is great at starting road projects but not so good at finishing them.  A friend from St. Louis once thought the city’s name is really “Under Construction.”  I had to explain a loose consortium of Boston songwriters had already claimed the name (great CD, by the way, echoes a seminal time in the MA music scene.)

We arrived home.  I opened the new surge protector box and edged behind the television.  The fancy old one seeing the plain new one began to howl.  I powered the old one off and was rewarded with delicious silence.  Moved seven plugs & power blocks to the new one, powered it on, and we were good to go!

Now, I was good tired.  I lay down on the couch with Rudy, put baseball on the TV, and eased into sweet sleep.  Note on the baseball games: when I was a child, Zady would put me on his couch with blankie and pillow, turn on the baseball game.  Instant sleep.  The technique still works.

After the nap, I made a few phone calls from my phone call list (tomorrow morning’s keep busy list.)

My mouth is still a wreck, a little worse than yesterday.  I know one morning I will wake up and it will be a little better than the day before.  Then, it will improve daily and at a rate that will amaze me.  In the meantime, I need to keep busy and be productive.  It’s easier to live in the day or the hour when I’m active.  My thought tonight as I go to bed will be on my early morning tasks for tomorrow.  Keep busy, boy!

Thanks all for your support, notes, and comments.  I never feel alone on this journey.  You are wonderful beyond words.

Love…

Richard

March 29, 2010 – Post hospital Passover blues

I felt good, fatigued but good, when I went to sleep last night.  Felt good while sleeping and during my pee breaks.  Woke up around 8:00 am, got out of bed, and felt punky (this does not mean ready to go a Clash concert in 1979; that is good punky.)  I was lightheaded, weak, and able to eat only part of a bowl of Cream of Wheat and drink a Boost.  I hit the couch and moved in and out of naps. 

I was concerned that my blood numbers might not be bouncing back.  I felt flushed and wondered if I was running a fever.  Made a phone call to Dr.S.’s office and made an appointment to see a NP, have blood drawn, and get hydration at 2:00 pm.

Adam and I watched TV and talked until Ann returned home from seeing patients.  Ad went to workout at a local gym while Ann took a look at me.  She noticed my flush, but the thermometer did not show a fever.  Ann asked me how much I was drinking, which was not a lot, and sat bottles of water in front of me and encouraged me to drink.  Adam returned home.  We each had our own version of lunch, for me a Boost.  After lunch, Adam worked on his laundry and began packing for his trip back to Boulder.

I’m still in the midst of the peak working side effects of the chemo cocktail.  My mouth has more sores and my cheeks have increased pitting.  My gums are very sensitive.  I know one day I will wake up and the process will reverse.  Until then, I hunker down and deal with it an hour at a time.  The stay in the hospital has impeded the healing process.

Ann & I went to Dr. S.’s office and met with the NP.  I had my port accessed, blood was drawn, and hydration hooked up.  Adam joined us; the three of us sat around and talked.  This wasn’t too fun a Spring Break for Adam.  He knew he was coming during the hard week of the chemo cycle.  The hospital stay and its aftermath got in the way of a family weekend.  We did get to spend a lot of the days together.  It was nice that he & Dan had some time with each other.

The NP came back with my blood numbers, which showed significant improvement over yesterday.  The hydration ran its course and gave me a boost.  A nurse deactivated my port and we headed home.

The first Passover Seder is tonight.  Ann decided that she didn’t want to leave me here alone (a good idea.)  Adam drove my parents to Lynn & Alan’s home for the Seder in their car.  After the Seder, Adam will drive into Boston with Dan, and catch his flight to Colorado in the morning.  Someone will drive my parents and the car home after the Seder.  It will all work out.  I’m sad to miss the Family Seder and this is the first one in several years that my parents have been healthy enough to attend.  Every Seder, I look around the table and think about the faces there and not there.  Seders mark the years.  This year, it's my turn to be a face not around the table.  My job is to get healthy.  Tonight, I’ll be grateful for all gifts in my life and know that the Family Seder awaits me next year.

I haven’t been up for returning emails.  In a few days, typing will get easier and I’ll get back in the swing.  Thanks all for your support, love, and good wishes.  They really help on days like today.

Love…

Richard

March 28, 2010 – Hospital adventures, take two

I really thought I was feeling fine on Friday; yes fatigued, but I was entering the peak impact of the chemotherapy side effects.  Woke up from another nap around 4:30 pm, and felt ok but a bit flushed.  Ann used her time-trusted thermometer – her forehead to mine – then grabbed the digital one – 100.7, above the 100.5 cutoff to head to the E/R.  I put together a hospital kit while Ann called doctors.  Adam took care of the dogs and called Dan who was driving in from Cambridge for a weekend visit. 

Ann, Ad, & I piled into the car and made the short ride to Saint Vincent’s Hospital.  Our experience last month proved invaluable.  We knew how to present my symptoms in the way that highlighted both chemo and a very low white blood cell count.  I was triaged and then isolated in the triage area.  A nurse took vitals, blood, gave me some meds and then moved me into an isolated room in the E/R.  A chest x-ray, urine sample, and port activation later, they were moving me up to a private room with a “gloves and masks” restriction.  Dr. Deb was not on call this weekend, but we were happy with Dr. J., the doctor assigned to me.  The first consult was to the oncologist on call.  We were headed in the right direction.

I was very happy with my care at St.V’s this time around.  The nurses were wonderful and caring.  The doctors prescribed a course of action that made sense for a patient undergoing chemotherapy.   Dr. J. listened well and explained the purpose behind the treatments clearly.  He has a trait I admire in all professionals; when encountering a problem that is outside of his field of specialization, he says so and consults an expert.  Basically, the plan was to check the usual list of suspects for infection while starting IV fluids and antibiotics.  In the end, the conclusion was that the infection was caused by an unidentified source, exasperated by the low white cell blood count from chemotherapy.

During the three days and two nights I was in the hospital, I was constantly hydrated.  The fluids made me stronger.  Dr. S.’s partner Dr. D. came in daily as the oncology consult.  Like everyone in her and Dr. S.’s, practice, she made me feel cared for and in good hands.

I returned home today a little after noon and collapsed with Rudy Dog on the couch.  The rest of the family watched me sleep while reading, computing, and watching TV.  This evening, Dan drove back to Cambridge to be ready for tomorrow, a workday.  Ann, Ad, & I are sitting around, taking it easy.

This was not the family weekend we hoped for, but we certainly spent a lot of time together!  Adam & Dan were both here to help in any way needed.  That took pressure off of Ann.

Passover starts tomorrow night.  Don’t think I’ll be eating much Matzo with my mouth sores!

Thanks everyone for your support and notes of concern.  With your help, I move forward.  For now, I nap again!

Love...

Richard 

March 26, 2010 - Back at St. Vincent's Hospital

I SPIKED A FEVER, SO I'M BACK IN THE E/R.

ADMITTED FOR A FUN VACATION.

March 25, 2010 – Nap day, take two

I could almost write “ditto” for today.  Could but that wouldn’t tell the full story.  My body is demanding sleep and I am happy to oblige.

Slept really well last night and woke around 6:15 am.  Took pain meds and my before breakfast meds, checked email and favorite sites, and then downed a Vanilla Boost.  Hopped into the shower – man, does it feel good to be able to get wet without worrying about the pump or lines – and took a long steamy one.  Got dressed and noticed that the pain meds had kicked in, so I made breakfast and ate quickly.

While I was going through my morning routine, Ann and Adam were also getting ready for the day.  Rudy and Lacey Dog followed us around the house, identified our activities, and knew we were heading out.

At 8:00 am, we climbed in the car and set off for Dana Farber.  It was a sunny, crisp morning, an ideal day for a road trip.  Overall, it was a smooth ride into Boston – smooth for Boston that is.  We only hit two major backups, around the I-90 / I-495 and I-90 / I-95 interchanges.  We negotiated our way through the Cambridge/Allston exit to reach Storrow Drive.  From there, Dana Farber is just down the road.

Ann parked the car while Adam & I went up to the 11^th floor for my blood work.  On the way up, I showed Ad a bit of Dana Farber’s vast Red Sox memorabilia.  Blood work was easy (oh port, I sing your praises!)  Ann joined us, and we walked over to the Thoracic Cancer suite for the vital signs check and my appointments with Dr. H. and Dr. H..  My vitals were spot on.  I was especially pleased to find that I gained a few pounds.

Drs. H. kicked my tires and checked my fluid levels.  They peered down my throat, probed my neck in search of my lymph nodes (they felt nothing once again- yay!), and interpreted my blood levels.  Then we discussed the post-intensive chemotherapy steps that pave the way for radiation and the likely pattern of companion treatments I’ll have during radiation.

We left the 11^th floor and made a side stop at Lower Level 1 which houses the cafeteria and one of the major Red Sox memorabilia collections.  I showed Adam prime autographed Carl Yaztremski and Ted Williams game jerseys coated with Fenway dirt and a massive autographed baseball collection.

From there, it was on to patient parking and a sunny ride home to Worcester, which I naturally slept through (oh, but the sun on my face was a joy.)  How did I spend the afternoon?  On the couch curled up with Rudy Dog napping.  There was vacuuming going on inches from my head that didn’t stir me.

Around 4:00 pm, I woke and decided it was blog time.  To be honest, I fell asleep several times while trying to write, so I sought inspiration in music: Erin McKeown’s Small Deviant Things, vol.1 and The Benjy Davis Project’s Dust.

On this sunny evening, I thank you all for your love and support.  You make my days lighter.

Love…

Richard

March 24, 2010 – Nap day

Fatigue is cumulative with chemo.  Each cycle, I’ve been more tired than the one before.  This third cycle, even given the busy schedules of Monday and Tuesday, the fatigue is deeper.

Adam arrived last night and has had the entertainment of watching me nap most of the day.  I’ve briefly answered a few emails and spent a little while surfing the web, trying to keep busy instead of sleep.  I’d like to read, but lack the concentration.  The couch ends up having too much of an allure.  I lie down and Rudy Dog assumes the nap position.

My mouth is being impacted by the chemo.  The pitting and sores have established growing beachheads and my taste buds are shot.  I’ve been drinking Boost and eating soft food, but it finally occurred to me to take the pain med this afternoon.  I’m not too smart about the pain meds.  I wait too long to start and then have catch up with the pain control.  Gee, maybe I’ll be able to eat scrambled eggbeaters, toast, and a veggie burger once the meds kick in.

This is a day of rest.  Tomorrow morning, Ann & Adam & I will drive to Dana Farber for my mid-chemo checkup.  I’ll have a break after that.  My next appointments (well, as of today) are not until April.

Radiation sounds like a tough road.  I understand they have to cover every conceivable side effect, but the list is a long one.  Thankfully, the list of meds available to counter the side effects is even longer. 

The radiation will be delicate because of the contents of the mouth, throat, and neck (saliva glands, voice box, taste buds, swallow muscles, and a bunch more that the nurse listed as I tried to stay awake.  Don't worry - Ann took notes!)  I know the radiation will present many challenges.  My task is to meet them one at a time as they arrive, not to think about what's next.  It may all be easier than I think.  I'm not planning for the worst, or the best, just planning on keeping my focus on the day, on now.  Thirty-five radiation sessions; I’ll mark them off on a calendar, my countdown to freedom.

Thanks all for the surprises in the mail, for your love and support.  Especially on a week like this, you elevate my spirits and keep looking forward.

Love…

Richard

March 23, 2010 – Wiped out boy

Note to self: stay home and rest during the days after the 5FU pump is disconnected.

Second note to self: go appointments when scheduled (today, we had an injection followed by radiation prep on the board.)

The two notes have an essential contradiction.  The appointments trump rest.  That doesn’t mean my body isn’t without a trick or two.  I took my shower this morning and was lightheaded and tired.  We had breakfast, got into the car, and headed off in the heavy rain to Boston.  On the way, I felt very fatigued and even more lightheaded.  I put the passenger seat down flat and Ann helped me into patterned belly breathing.  I fell asleep as she navigated the morning traffic and wet weather. 

On the way to Boston, we got a series of phone calls from a concerned (and very nice) Dana Farber nurse informing us that my injection (to boost my white blood cell count) scheduled for 9:45 am had to be postponed until the afternoon.  The drug, without a special order written by a physician, cannot be administered within twenty-four hours of the 5FU pump being disconnected (2:00 yesterday.)  I explained that originally the injection was scheduled for yesterday.  She said the injection would not be released by the pharmacy without the special order and that she would keep calling to facilitate the order.

Despite the weather and my meltdown, we arrived at Dana Farber on time.  Ann parked the car while I raced up the 11^th floor.  When I checked in, I was told that my injection was now scheduled for 1:00 pm.  I recounted my conversation with the nurse and they paged her.  She told me that she still didn’t have the order and the injection was still at the pharmacy.  She called for the order again, without success, while Ann joined me.  We decided to postpone the injection until the afternoon.

We walked from Dana Farber to the radiation prep suite at Brigham & Women’s Hospital.  The prep was fun – well, this is me talking!  I stripped to the waist and lay down on a table with a special head support.  The two techs explained in great detail what was going to happen.  Apparently, this process is worrisome for folks with claustrophobia.  In my case, I go into science fiction land.  So, as they carefully laid out each step, I rested and took in all the devices in the room.  I restrained myself from asking about each.  I figured they wanted to finish today.

The main goal of the prep is to construct my radiation mask.  They prepared my face (a facial like solution, warm and relaxing) and then pulled a large piece of tight plastic netting over my head, neck, shoulders, and upper chest.  The netting was hot but not too hot.  The techs carefully shaped the material to the contour of my face and upper body and snapped down each region of the mask until it was taut. After the mold was dry, they slid it off me and showed me the result.  These masks – post-radiation treatment – are popular for Halloween.

The last step was a trip for my new doppelganger and I to a special MRI machine.  We were assembled on the tube’s table and locked in place.  Time for a mini-space flight (again the tech was relieved that small spaces are not a problem for me – hey, I used to go spelunking!)  In and out, in and out, to Ben’s favorite click clack magnetic percussion and we were done.

We met briefly with Dr. T., my radiologist, and went over procedural details.  He sent us back to Dana Farber to meet with his nurse for radiation orientation.  We spent an hour going over treatment protocol, dental care, side effects (oh, this is going to be lovely!), and dealing with side effects.  We have pages of instructions.  The details will slip out onto this blog as I experience them.  During the orientation, I leaned against the wall and tried to stay alert, or even awake.  Ann took in the nurse’s dialogue.

We finished and took the elevator up thirteen floors to where my injection waited.  The same nurse (I felt bad for her – she felt bad for me – the morning’s delay was out of our control) brought me into the blood room and dashed the needle into my arm.  I thought the shot was to be administered in the “loose folds” of my stomach.  Stomach, shoulder, whatever; we were done.

We left Dana Farber and walked into rainless skies.  A very tired Ann drove home.  I fell asleep as soon as we hit Storrow Drive and didn’t wake up until we were home.  Ann had patients, so she went off to work.  I fell on the couch and Rudy Dog immediately assumed the napping position.  Good pup, he knew how I felt!  I slept deeply enough that Lacey Dog’s howls didn’t wake for doggie dinnertime.  Finally, I rolled off the couch, fed the dogs, and shook myself awake. 

I am very grateful that I have NO appointments tomorrow!  We have one on Thursday at Dana Farber.  Adam arrives tonight, so we’ll have another driver.

I’m feeling better now, less fatigued.  The naps certainly helped, but having all y’all on this ride with me helps me move forward, especially through the tough moments.  I cherish you!

Love…

Richard

March 22, 2010 – Tired boy…

Busy day today and I am officially a tired boy.  Today is the day that the 5FU pump ran its course (and I got to lose my 24 hour a day shoulder pack.)  Fatigue was expected as the primary side effects of the chemo started to kick in.  After the mild weekend, I expected to ease in.  So what was my day?

This morning, Ann & I headed over to Dr. S.’s office (my Worcester oncologist) in separate cars.  Ann had patients today and my appointment was going to be long.  Dr. S. wanted to examine me as I enter this third cycle.  We don’t want a repeat of the infection and hospitalization of last cycle.  My blood levels all tested as excellent.  My vital signs were fine.  Dr. S. took a gander at the lesion on my hip that likely caused the infection last cycle.  There was still liquid below the scar and the size of the lesion was a concern.  So, he decided to lance it again while my blood counts are normal, before the low white cell counts that invite infection.  We needed to wait for the appropriate room to open up.

The wait was fine; it was time for hydration.  During chemotherapy, hydration aids the process.  It also helps the patient (me) feel better.  As I lay back into the recliner and had my port hooked up to the IV line, I discovered that my earphones were not with me.  This was a particularly bad omission because I was out of books.  Instead of bemoaning my lack of entertainment, I made phone calls.  Then I tapped through my iPhone.  Good thing, it has Solitaire; I was able to play many games without a winner (but I kept trying!)  I laid back in the recliner and tried to nap.  The folks in the infusion room were in good moods; the laughter and conversation were too musical a background for sleep.

Luckily, Dr. S. came by and said he was ready for a little lancing.  My IV bag still had fluid, so we rolled the post and my pump down to the exam room.  Dr. S. decided to make a longer incision to insure that the lesion would be completely drained.  A little slice and all he found was dried blood, which was good.

Back to the infusion room where my IV fluid bag finally emptied.  We checked the 5FU pump and figured that I had at least an hour before it would be done.  I decided to run errands while the pump ran.  I drove to Auburn, picked up my library books (a Dennis Lehane and another Jess Walter), and went to Papa Gino’s for a quick lunch.  I ordered penne with pomodoro sauce, a dish I’ve had many times before pre-cancer treatment.  I was hungry and scoffed it down, but slowly realized that the sauce tasted well, odd, and not in a good way.  Was it spicier?  More garlic?  No, it was the chemo reprogramming my taste buds.  Back in the saddle again.

Drove back to Dr. S.’s office and settled into a chair in the infusion room.  I opened Lehane’s The Given Day and prepared to dive in when the 5FU pump alarm beeped – running on empty!  One of the infusion room staff came over and disconnected the 5FU pump and the IV line from my port.  It was a boost to lose the pump bag!  Side note:  Dr. S. and his staff are wonderful and caring.  I feel comfortable in his facility.

Got into the car and drove home.   Let the dogs out and in then collapsed on the couch.  Rudy Dog, ever observant, jumped up into nap position and to sleep we went.  I didn’t realize how drained I was.  Such a change in a day, but that’s the way of chemotherapy.

Woke up when Ann arrived home.  Had a little supper, doing a little writing.  Tomorrow, we head into Boston.  I’ll have the stomach injection that should keep my white blood cell up and then go for radiation prep.

Tomorrow, Adam arrives for a week’s visit.  He has work to do while he’s here which will coincide nicely with my naptimes.  I’m looking forward to having the time together.  Over the weekend, we’ll have the whole family home, sheer bliss.

Thanks everyone for your love and support.  You carry me through these days.

Love…

Richard

March 21, 2010 – Lazy day in Wormtown

First of all, you may ask “What is Wormtown?”  To those involved in the Worcester Arts & Music Scene (yes, there really is a vibrant one) Wormtown is the alternative name for the city as designated by Brian Goslow, our Minister of Culture, music and arts reporter extraordinaire.   In my radio DJ days and as a poet, I got to know Brian well and appreciate his contributions to drawing a spotlight to the largely underground heartbeat in the city.  So, often I defer to our old mill town’s nickname.  Without worms, we have no agriculture.  Without Wormtown, we have no culture.

I got to bed around 11:30 pm last night and slept through until 9:30 am!  Well, slept through does include a pee trip every 60-90 minutes, but I fell right back into deep sleep every time.  Ah, hydration, so important as the chemo seeps through my body, wakes me but assures me that my fluid intake is more than adequate.

Today has been a lazy day.  Did my usual morning and breakfast routine, then Ann & I watched “Sports Reporters” and some home renovation/staging shows on TV.  Ann & Pam took Lacey Dog and Pam’s pups, Sam & Lily, for a long walk through Moore State Park in Paxton, just north of town.  Rudy doesn’t enjoy the walk through the woods, so he hung out with me.

Most of the day, I’ve been listening to The Grateful Dead’s Dick’s Picks Volume 14: Boston Music Hall, 11/30/73 and 12/02/73 while watching the Women’s & Men’s NCAA Basketball Tourneys on mute.  In many cases, TV is best enjoyed on mute, especially with fine music to fill the audio track.  The 1973 lineup isn’t my favorite Dead period.  I much prefer the 1966-1970 years when Pig Pen’s blues chops shaped much of the band’s direction.  Jerry’s guitar playing was fiery in that era, less restrained but not undisciplined.  I do love how over the decades he and the band constantly experimented with style, took artistic plunges, and grew their sound.  But I will always have a soft spot the band’s early days when the boys were focused on raw energy, playing on young legs.

I’m feeling pretty chipper today.  My big plans for the rest of the day are to catch a little nap, trim my fingernails, and finish the Jess Walter novel.  I only have about 40 pages left in (and I’m loving the book), so I’m saving them for a moment of literary hunger.  The next books I have queued to read are waiting in the Auburn MA (town just south) library but the libraries are all closed today.

I’m feeling pretty chipper, but the 5FU pump will complete its program tomorrow afternoon and soon after the primary chemo side effects, the working side effects, will kick in.  I think that they may seem gentler than the first two times.  First of all it will be the last intensive chemo cycle; staying in the day or even the hour will be easier.  Plus, the knowledge of how to deal with the side effects picked up over the first two cycles will help.  Lastly on Tuesday, Dr. H. has scheduled me for an injection that should prevent my white blood cell count from falling to zero as it has during the first two cycles.   12% of Cisplatin patients have the low white blood cell side effect and the injection, into the stomach roll, has proven to be effective.  So maybe I’m being cavalier, but I expect an easier cycle.  Check in next week!

Thanks for the cards and emails of support.  I have the cards stacked up triple deep on the broad windowsill.  It‘s a joyous and colorful view that reminds me of all of you.  I walk along the windowsill and see friends and family, makes me smile and feel loved.  Thanks also to the 7^th and 3^rd Grade classes at Temple Sinai who dropped off a Passover Basket for us today.  More sunshine in my day!

Love…

Richard  

March 20, 2010 – Busy day in Wormtown

Insomnia feeds on itself.  Last night, I had a delicious uninterrupted eight hours of sleep.  Could have slept longer, but I’d like my sleep cycle to be as normal as possible.  Got up around 8:00 am, had my first handful of pills followed by a Vanilla Boost for breakfast #1.  Checked my email and favorite sites while I waited for the meds to settle, then poured a bowl of Cheerios with Silk Vanilla Soy Milk for breakfast #2.  After the bowl, had my second handful of pills.  Back in the chemo saddle again!

I puttered around, feeling energetic and real fine.  It’s Dad’s birthday today and for some reason, I hadn’t been able to shop for a gift for him.  He’s tough to shop for, but I know he’s been having a problem with the wireless mouse on his iMac.  It’s just not smooth, even a bit of a pain for me at times and I get along well with devices.  So a new mouse was just the ticket, but one I’d have to try before buying.  Not only does it need to fit my hand, but be easy for an 87-year-old man to operate.  Ann offered to drive me to Best Buy and then CVS, but I felt up for driving – plus I had the feeling that this was going to be a slow shopping trip, a pace I enjoy but one that can drive other people bonkers.  Put a geek among aisles of devices; you know I gotta try all the cool ones and even some of the semi-cool ones.

Had a nice sunny drive over to The Greendale Mall, once a bustling place, now basically Best Buy and a bunch of hanger-on stores.  I played with a bunch of mice, but kept coming back to the new Apple Magic Mouse (and yes, Stuart – I was channeling you!)  The generic mice designed for PC and Mac platforms had too many potential pitfalls, i.e. too many buttons, wheels, and combinations that could get Dad in trouble.  The Magic Mouse is slick and after enough play, I decided that it would fit Dad’s hand and that enough of the esoteric geek-beloved features could be turned off to make it fool proof.

Headed over to CVS Pharmacy to pick up a prescription and some miscellaneous supplies.  I got the Rx first, paid for it separately and my CVS Card gave me a $5 off $25 purchase coupon.  So of course, I had to meet that $25 threshold; destiny isn’t it?  Well, it certainly is to a chemo-addled brain!  I muddled and puttered the aisles figuring out what stuff I’d need over the next month, threw in a magazine for Ann, and ended up spending over $35.  Those CVS people know what they are doing.  Fortunately, I did get stuff we need.  Between my compromised arithmetic and the attraction of all the shiny packages on the shelf, I spent quite a while at CVS, but it was fun!

Got home and began unpacking my shopping trip.  Dan arrived to visit Ann & I and to see Dad/Papa on his birthday.  We ate a quick lunch and called over to Dad’s.  When I talked to Mom/Mema last night, she there was absolutely no way that she was leaving the house today.  She generally plays cards on Saturday afternoon but the combination of a lingering back injury and a very busy Friday shopping with Renee convinced her to cancel the card game.   However, my family is a card playing family, especially The Greatest Generation.  Therefore, at noon Mom relented and took her seat at a friend’s table and kept the game at full tilt.  So, Ann & I & Dan & Rudy Dog visited Dad without Mom there.  We gave Dad a couple of cards and the wrapped Magic Mouse.  He opened the package (Apple’s new minimal environmental friendly packaging without labeling) and had no idea what he was holding.  Dad thanked us and we told him what his gift is.  Dan set the mouse up to its simplest configuration and showed Dad how it works.  It is much easier for Dad to manipulate, both the optical tracking and the single button that is the top of the mouse (no confusing scroll wheel.)  The top button can be programmed to do all kinds of slick geeky things dependent of where you press, how many fingers you use, and many dragging strategies.  But for Dad, this mouse can slow dance with terrific response.  Rudy Dog kept checking the house for Mom, but gave Dad a lot of attention.  He loves to visit them!

We returned home and Ann took Lacey Dog on a walk as consolation for being left at home alone.  Lacey is a sweet old dog but does not like car rides and also (see the prior TinkleTrousers.com discussion) has a bit of dementia that affects her once spotless housetraining, not a good combination for today’s birthday trip.  Ann and Lacey arrived home just in time for a visit from Larry & Lora, just back in town from a visit to Florida (including lovely Sanibel Island.)  We watched basketball and talked about their trip.  Rudy Dog was real excited.  Not only was Dan home, but his friend Larry was here!

After Larry & Lora headed home, I lay down on the couch with Rudy snuggled in the nap position, but I wasn’t tired.  So I rested and talked with Dan & Ann.  Last night’s sleep was carrying me through this day.  This is my third chemo cycle and we’ve learned from the first two cycles.  The 5FU pump continues to push its nasty self into my vein, so maybe I feel a bit cavalier.  I start to think, “hey, this cycle will be a comparative breeze.”  Let’s see what I’m saying (and feeling) in a few days!  Monday, the 5FU gets disconnected and the chemo cocktail begins to peak.  Today, that peak is far away.  I live in the day.  It’s a good day.  I’m having fun.

Around 6:00 pm, Jesse & Susan just back from a trip to (yes) Florida, stopped in with take-out from Pho Dakao, a local sumptuous Vietnamese restaurant.  Rudy was excited – now his friend Jesse was visiting!  The five humans sat down and gorged ourselves with Asian delights, and found room for dessert (one must have priorities!)  Then, we moved to the living room and continued the conversations until it was time for Jesse & Susan to meet up with daughter Julie.

My original plan was to take periodic rest breaks in the bedroom during today’s visits.  But I didn’t (and still don’t) feel tired, drained, or mega cottonball brained.  I believe I’ll sleep real well again tonight.  So again, I’m going to ride this day for all its worth – but with the understanding that I have to take care of myself and be smart.  So, to bed early despite all these exciting Men’s and Women’s Tournament game going on into the wee hours.

We’ll see what tomorrow brings, how I feel after this busy and fun day.  I may regret my level of activity.  Then again, I may be reading my body correctly.  Life is about learning.

Thanks all for your comfort and support.  Knowing that I’m not going through this alone raises my spirits immeasurably.

Love…

Richard

March 19, 2010 – Infusion 3.2 – pure joy!

I’m exhausted now, otherwise feeling ok.  Before, during, and after chemo infusion, I need to take a lot of steroids.  Steroids are wonderful to counter Cisplatin’s side effects, but come with their own set including insomnia.  With today’s dose, I’m tired but not sleepy.  Ah well, insomnia ends with a good sleep.  I’ll get Rudy Dog to cuddle with me.  He is the nap inducer king!

We had a wonderful surprise in the infusion room this morning.  I was in for hydration and reading a Jess Walter novel.  In walks a young couple who settle into the next chair, our cousins Darlene & Alan!  Alan is the son of my first cousin Anita, Arlene’s sister.  There are certainly far preferable places to run into family, but we had a lovely visit.  Alan is sweet and sincere and devoted to Darlene.  I’ve enjoyed conversations he and I have had in the past, conversations in the midst of family gatherings.  This morning we could focus on one another.  Ann & I haven’t had the opportunity to talk with Darlene before today.  She is a delight (she says “blankie”, too!), sparkling with her words, and strong in her fight with cancer.  She and I agree that Arlene is our hero as we ride the roller coaster of cancer treatments.  We both marked the end of intensive chemotherapy infusion (though we have the three week cycle ahead of us), she a longer course than I.  The treatments are a lengthy road and marking steps on the way shows progress and helps the spirit.

Ok, I’m going to stop and try that nap now.  The combination of insomnia fatigue and cottonball chemo brain make writing a bit of a challenge.

Back from the nap.  Rudy took in a sunbeam and then joined me on the couch.  He’s back in the sunbeam now.  If I didn’t have the 5FU pump, I might join him on the floor.  He looks comfy!

I wish I could be more effusive about the serendipity in the infusion room this morning, but my words are coming harder today.  The next couple of weeks I’ll be thinking, “this is the last dose of intensive chemo.”  I can really live in the day this cycle.

Ann told me I missed Dr. H’s comment yesterday after he poked and prodded looking for the lymph nodes in my neck.  He said his inability to find anything is a “complete response.”  I guess that’s good!  Ann & I are curious to see what the pre-radiation CT/PET scan will show.  We wonder what the current size of the alien mother ship (my primary tumor on the base of my tongue) is.

Thanks everyone for your support and love.  It’s an immeasurable comfort to know I have the embraces of friends & family on this journey.

Love…

Richard

March 18, 2010 – NY Times Opinion & Infusion 3.1

We’re at Dana Farber for the day.  Got my port set up with both lines active and have some blood drawn.  Saw the oncology team; found out that my white blood count is back up to 11.5.  Dr. H. poked and prodded my neck but couldn’t feel my lymph nodes.  This delighted him, Ann & I even more.

So now, I’m in the infusion room, a corner chair.  Sun is pouring through the windows (so nice!) and my fellow patients have sunny smiles.  I’ve very comfortable here.  

This is the start of my last chemo cycle.  I will have chemo weekly while receiving my radiation treatments, but it will be a less profound cocktail, one designed to work with the radiation.

There was an opinion piece in the New York Times titled “With Cancer Let’s Face It: Words Are Inadequate” this week.  ( The link is: http://well.blogs.nytimes.com/2010/03/15/with-cancer-lets-face-it-words-are-inadequate/?scp=1&sq=With%20Cancer,%20Let’s%20Face%20It:%20Words%20Are%20Inadequate&st=cse .)

A few people have sent it to me and asked what I think.  I agree some with the article but disagree more.  First of all, ask a writer, when are words ever inadequate? 

To the NY Times piece:

I see myself in a clear battle with cancer.  A friend, Stu (an ENT), described it as a fight with a micro cellular enemy.  When I was first diagnosed, I called my primary tumor the alien.  I borrowed the term from Ben who gave the term to his brain tumor.  Alien seems appropriate, an alien invasion.  I think of my mouth, tongue, and throat as a battlefield with a lot of collateral damage.  

The author also says the body is a battlefield, but here I disagree strongly with the author's assertion that the cancer patient is on "a quest out of Tolkien, or a dark waltz."  This battle is mine against this invader and on my turf.  The author continues writing that cancer is "a long and difficult journey."  I prefer to look at this journey on a day to day (or even hour to hour) basis.  It affords me no comfort to consider seven weeks of radiation treatment when I'm in the midst of chemo cycles.  When I get there, I'll deal with it day by day.  I do believe that I will learn valuable lessons from this experience and I do believe the experience will make me a better human.  The most profound lessons in my life have always had a cost associated with them, be it pain, hard work, or sacrifice.  This is no different.  There is balance in living.

I've always felt angry when hearing coaches (especially youth sports coaches) rallying their teams by comparing a sporting event to a "battle" or a "war."  Such a comparison is not only disingenuous to combat veterans and their families, but also a poor lesson for the kids/athletes.  Coaches are teachers, have influence over their players, and should speak with discretion.  As well, the coaches' actions during practice and matches serve as a model to the team and I've seen kids poisoned by their coaches.   (Ok, I'm getting off topic.)   But I do not feel that the term "battle" with cancer is inappropriate.  I am battling for my life and facing pain and hardship.  But I realize that I am so fortunate to face pain and hardship surrounded by the comfort of home, friends, family.  I fight my battle engulfed by close and immediate love.

Two more quick points or I'll end up writing a full rebuttal to the New York Times.  First, I don't see myself as a victim; it's nothing personal, just a virus.  We take the good and bad with health.   Secondly, I will see myself as a survivor.  The author is limiting the scope of the word to combat experience.  I find that a narrow interpretation.  Perhaps, what's most important is what one does with the gift of survival.  To me, there is a responsibility that accompanies survival's grace.

Well, I’m on chemo bag #2 and my brain is easing into that cottonball effect.  It’s gradual.  By tonight, profound.  Maybe I’ll watch NCAA basketball.  I know, I know, curling is more my pace but at least they show the score and time remaining.  If I can’t read my book, I bet I can still grasp the stats!

Thanks all for your love, support, and comfort.

Love…

Richard

March 17, 2010 – St. Patty’s Day in Boston

Ann and I are comfortably ensconced in the Longwood Best Western on the periphery of the Longwood Medical Campus, which comprises Dana Farber, Boston Children’s Hospital, and Brigham & Women’s Hospital.  Just for good measure, down the block and around the corner are Beth Israel Hospital and Joslin Diabetes Clinic.  In this neighborhood, scrubs are haute chic though today many people are wearing green.  When we got to the hotel’s check in desk, I thought for a moment that Irish attire was a requisite for the reservation!  The room is nice.  We’re on the eighth floor and cannot hear the street noise.  The room, as it did last time we stayed here, has two twin beds each with its headboard set against perpendicular walls.   The two beds are important because tomorrow I’ll be hooked up to the 5FU pump and it needs its own side of the bed.

The view is urban:

If you look to the left of the Longwood Food Court sign, you’ll see a side entrance to Dana Farber.  We are able to walk from the hotel lobby to any facility in the medical campus without going outside.  Today through Friday are supposed to be sunny and in the 60F’s, so we’ll likely elect the outdoor route.

Dan will meet us for supper tonight.  Dana Farber is reasonably close to his apartment.  It will be nice for the three of us to have a relaxed dinner out.

I’m feeling good overall.  Looks like I’ll be on the Imodium express for the near future.  These treatments are a match of chemical v. chemical with one of the playing fields my digestive track.  This afternoon, I look at tomorrow and the start of my third of three 21-day chemo cycles as a marker reached.  I still have the roller coaster ride of the cycle ahead, but I can mark progress.

It’s Springtime and I’ve been sneezing a lot.  I stopped Claritin when I began taking all the chemo drugs, but it may be time to start the allergy pill for the season.

We’re going to take it easy and ready ourselves for tomorrow.  Our first appointment is at 8:30 am and I’m scheduled to start infusion at 10:30 am.  Onward!

Thanks everyone for your support and love.  Arnold, it was wonderful to talk to you yesterday; you’ve been through the throat cancer treatments and can look back eleven years later at your path out of the box.  Thanks for sharing your experience and wisdom.  It really helps!

Love…

Richard 


p.s. Ellen The Prom Queen earns two points and a star for correctly translating the title of yesterday's post: "Hi ho, hi ho, it's off to work we go!"  You rock, Ms. Epstein!

March 16, 2010 – Hi Ho L’Avodah Yavoh!

An extra two points to anyone who figures out today’s title.  Yavneh alumni from the 1960’s are excluded.

Had a good night’s sleep, didn’t get up until after 9:00 am, though my body has had no reason to adjust to daylight savings time.  Breakfast went down well.  My taste buds are still askew but the Cheerios tasted all right today.

Went into work today for a few hours.  It felt good to be in the office, to see all the folks.  My brain definitely is not functioning at full tilt.  While working on General Ledger with Jim, we encountered a few problems (standard for the course) and I felt the cottonball effect.  I knew there was answer or a way to find the answer but I was still coping with the question.  Part of this is cumulative fatigue and the effect of all the medications; I hope the rest is just rust.  Last month, I did the financial statement and though it took more time and effort, I muddled through.  To keep this in perspective, I need to look at my reading level.  I’m back to reading novels, though much more slowly and carefully if I want to drink in the writing and nuance.  I am not reading a book or more a week.

While at work, I munched on a Subway foot long veggie sandwich.  I had the hankering and the hunger.  It’s time to chow down and add a few pounds until the chemo kicks in!

Tomorrow, we’ll pack up and head to Boston.  We’re planning to stay overnight at the hotel in the Longwood Medical Campus for two nights.  I start with chemo prep at 8:30 am Thursday, finish with post-chemo fluid infusion at 8:00 am Friday.

Alan just stopped by with some soup from Uno’s and a batch of meeting cookies from Lynne and Charlotte.  I have a real supper treat tonight!  Thanks!

And thanks all for your good wishes and support.  I feel loved and love you!

Love…

Richard

March 15, 2010 – Rainy ride, Worcester snow

Last night was an insomnia night, typical for me in the third week of the 21-day chemo cycle.  It was a weird insomnia because I was so tired.  I got out of bed and fired up the computer.  On the blog was posting from BeJae, what a midnight treat!  BeJae asked some fine questions, so I decided to post the answers here.  But first…

Had an easy drive into Boston for my hearing test, an amazingly easy ride in; light traffic, cloudy skies, misty rain.  Arrived at the audiology office and went right in for my test.  My audiologist told me that they had many cancellations due to the weather.  Seems the eastern part of Massachusetts bore the brunt of the rainstorm.  We did the three part hearing check and it turns out that my hearing has slightly improved.  Well, truth is I had less wax and fluid (isn’t that just what you wanted to know?) than the earlier tests.  So, we are good to go on Thursday with the chemo cocktail.  Stopped for soup and a bagel at Au Bon Pain in the hospital lobby.  The ride home was a bit taxing.  The rain and wind picked up, traffic was moderate to heavy.  In Worcester just now, the rain has changed to big heavy snowflakes.  We are SnowCity!

Now to BeJae’s questions.  First: “You mentioned that you have a chemo port so that they don’t have to stick you every time. Is it in your chest? Does it bother you to have it there in between treatments? Does the chemo go into a vein? Does it circulate through your system?”

I have a Bard Power Port.  It’s not expressively for chemo, but for anyone who needs constant access to the veins, especially when the veins are hard to access.  Chemo does a number on one’s veins, so I’m real grateful for the port.  The Power Port has two channels. Special needles are poked through the skin into the port’s dual membranes.  Some magic happens within the port that funnels fluids in (IV fluids, chemo, medicines) and out (blood.)  The other end of the port is connected to a large vein.  In my case, the placement of the port was as close to the tumor as possible.  If you feel my upper chest just below the collarbone but as close to the shoulder as to not interfere with muscular movement, you will feel a well-defined lump.  The port is placed under the skin like a pacemaker.  It’s good for over 1,000 punctures.  I’m not counting.  How did it go in?  I lay down in pre-op, took a nap, and woke up with a lump on my chest. Oh, and a really cool purple and gray bracelet!  Port went in on February 1st, in service the next day.  I notice it’s there when I make extreme movements, no pain just awareness.  My port rocks!

Second: “When you’ve described the side effects … well, I guess they aren’t side effects … they’re primary effects, intended effects … those effects seem so specific to your tongue and mouth. If the chemo circulates through your system, how does it end up at such a specific site? How does it, in ridiculously non-medical terms, know where to go?”

There are two flavors of side effects, the immediate impact of the chemo cocktail on the body which lasts for about six days, followed by the working side effects which last about eight days (maybe a little more, but when I’m on the way out of the effects, I feel lighter.)  The immediate side effects are things like nausea, hiccups, and fatigue.  The working side effects are due to the attack by the chemo on all fast growing cells in the body; they include pain (in my case concentrated in the mouth, throat, and on the tongue), major fatigue, lack of appetite (nothing – not even coffee – tastes palatable), loss of hair, tender skin, “short-circuited” joints (missed that one) and so on. 

The chemo doesn’t know specifically where to go.  It attacks all fast growing cells.  The tumors are the primary targets, but the chemo can’t differentiate between cancerous cells and say, the fast growing cells in the wall of the mouth, on the tongue, in the sinuses, and in hair.  The chemo cocktail prescribed for me at Dana Farber is particularly effective for treating my type of tumor.

Third: “Other than some general fatigue, do you notice other parts of your body besides your mouth, tongue and throat that are involved in the chemo reaction? I know you say that you feel cotton-brained … but, do your knees ache? Your shoulders? Do you feel like you have the flu?”

During the first cycle, my back and legs ached when my bone marrow kicked into high gear and pushed to replace the white blood cells.   My body is weird; wherever there are fast growing cells, there is change.  Head hair is generally the most noticed (and can be traumatic) but in my case, I went with the bald look pre-cancer.  I certainly notice, though!  My razor sits in the medicine cabinet looking forlornly at me every morning.  My beard is gone except for a smattering of hardy white bristle hairs; I don’t shave them.  I figure they’ve earned it.  But body hair is affected all over.  All over.  Every shower is an adventure.  Use your imagination.  I use a heavy hair filter over the drain.

I don’t feel like I have the flu.  Chemo is a unique feeling.  Frankly, I feel like crap, especially when the chemo is doing its primary job.  But the approach to how I feel, both in painful areas like the mouth and my general malaise (which is mind and body), is far different.  Chemo does not make me sick in the sense that the flu does.  Chemo is part of the cure.  Chemo is the road to getting well and getting my life back.  Chemo is my friend, but a friend that has to cause me pain to help me.

Thursday, they hook up the port and infuse me with the chemo cocktail and other fluids.  I know it’s the beginning of at least two hard weeks, but I say “Bring It On!” because the treatment is the way to regaining my health.  The infusion room is an inspiring place because most everyone is in a good mood as this poison is pumped into their veins.  Everyone knows what’s coming.  Everyone understands the price.  But the smiles and humor express the hope in the room, the hope and faith that is so necessary for recovery.

Thanks everyone for your support and comfort.  Happy Monday and stay dry!

Love…

Richard

March 14, 2010 – Visiting day (or is it visited?)

It’s been a quiet Sunday.  The rain did come as predicted, but either I slept through the worst of it, or we had a lot less than anticipated.  Dan did run in the race this morning.  Though it was real wet in Boston, most of the five thousand runners who signed up showed and ran.  Amazing!

We spent most of the day puttering around.  Overall, I’m feeling much better.  Imodium will be part of my life for the foreseeable future but that is under control.  The day was punctuated by naps and visits.

Ann’s Dad Bill and his friend Mary stopped by.  This is the first time I’ve met Mary and the first time Ann & I have met them as a couple.  They are very cute together.  We’re delighted that they have each other.  Life is best lived with your best friend locked in step.

After an interim nap, my Mom & Dad came by to say hello.  Mom’s back has been bothering her, so the visit was all the more appreciated.  Dad likes to watch the Celtics games, so we that be the backdrop. 

Throughout both visits, we were serenaded by our canary Sweetie who is quite the singer.  Rudy and Lacey Dogs were excited that everyone came to visit them.

I’m trying to push calories today.  These are sort of interim days.  The second chemo cycle winds down.  Thursday the third starts up.  Though each cycle has its own peculiar challenges, I know what to expect.  Hopefully, what we’ve learned from the first two cycles will help us through the third.

Tomorrow afternoon, I head into Boston for a hearing test.  One agent in my chemo cocktail, Cisplantin, can cause hearing loss.  So far, my hearing has been unchanged.  The team at Dana Farber wants one more test to be on the safe side.

So, a lazy day.  Hope the rain was reasonable wherever you are.  Thanks for being you, for your support, and comfort.

Love…

Richard

March 13, 2010 – Grey day Spring rain

It’s one of those New England March days, grey skies and rain, that makes it hard to get going.  The whole day suggests a nap.  It’s the time when hibernation ends, so perhaps today is the precursor.  Tomorrow, we are expecting the heaviest rains in six years or so, three to six inches predicted.

Having a good day overall.  Seems my stomach is stabilizing, not quite there yet, but close.  I’m ready for a big plate of penne pasta with pomodoro sauce.  Not sure my body is, but maybe we’ll find out tonight.

Woke up this morning feeling good.  Had a Boost and checked email and my favorite sites.  Did a bit of writing and puttered around the house.  Made a double portion of Cream of Wheat for breakfast and drank a second bottle of water.  Ann woke up from an early morning nap (dogs get up at 6:00 am so does Ann) and we watched a bit of television.  We lounged in the grey light and rain, reading, watching, and talking.  Then Rudy Dog curled up next to me on the sofa and I was fast into a deep power nap.  Rudy is so good at that!

Woke up a little before noon, a few minutes before Dan arrived for a visit.  We sat around and talked about our weeks past and coming.  Dan is supposed to run in a race tomorrow and we wonder whether the rain will cancel the event.  This is New England.  Unless the course is over grass and soft ground (instead of road surface), my guess is that it will be on.

Rabbi Seth stopped by for a visit around 1:00 pm.  It’s always a pleasure to see him.  Spirituality is important while facing cancer.  Faith is intertwined with the challenges of chemo treatment.  We talked about our families.  Rabbi Seth has known Dan & Adam since they were toddlers, watched them grow through bar mitzvah years to college and into adulthood.  Our conversation also touched the nature of illness and its effect on the person; how attitude, outlook, and perseverance affect the long road of healing.  I talked about the infusion room and how it is a positive and inspiring place.  We’re all getting chemo pumped in but most everyone greets me with a smile and kind word.  Visits from Rabbi Seth boost my mood.

I’m going to plunge back into my current book, Jess Walter’s Citizen Vince.  Ann is napping (told you, it is a nap day) but my body doesn’t feel tired.  Thought it was but it said “just fooling – go and get busy, boy.”

Thanks Cousins Betsy and Arlene for your emails reminding me that I shouldn’t expect to be in a good mood everyday.  In regular (that would be pre-cancer treatment) times, I have up and down days.  Am I expecting to have all up days as I go through chemo?  Talk about unrealistic expectations!  But I do need to be aware of what’s going on emotionally, not feel sorry for myself, let myself feel sad and allow the emotions to work themselves out.

Ann’s up and we’re ordering in pasta pomodoro.  It’s a litmus test for my stomach.  If all goes well (and it should), I can start eating with more variety and abandon.  I need to put some weight on between now and Thursday.

Thanks all for your love and support.  I draw on your strength.

Love…

Richard

March 12, 2010 – Time to call myself out!

Last night into this morning, I had what I hope was the final assault from the oral antibiotics prescribed by the Hospitalogist (don’t you love the age of specialization?)  My stomach is compromised as it is from chemo, adding in the oral antibiotics was just too much.  So let’s just say that Imodium was added to the mix, Imodium and lots of water.

We waited to see how the morning went, but at 10:00 am, we decided that the best course of action was to postpone the Cape Cod trip until next month.  We were looking forward to seeing Lynne & Alan at lunch and having the weekend by the ocean.  But my body is calling the shots.

I ended yesterday feeling very up – tired but feeling like I was headed into a sweet week of guiltless eating and feeling pretty normal.  This morning I woke without the blues of the past two mornings, but with my stomach dominating my mood.  I napped and drank water, got up and had some white toast, napped some more.  So, ok, I was well rested and hydrated, but in a funk.  And a funk is not good for someone undergoing chemotherapy.  It’s not good for anyone.  I am the only one who is control of my mood.  It is my responsibility to call myself out.  I must keep stay positive and keep a tummy ache in perspective.  Instead of worrying about how I will feel for next Thursday’s chemo treatment, I have to keep my head into today, into this hour if necessary.  You, my friends and family, help me stay positive, give me support I can draw on when I start to slip.  But it is me who must stay strong and not let myself lose perspective.

I’ll finish this later.  It’s a nice day.  I’ll take Lacey for a walk.

Lacey and I took our normal “short” route, a half hour loop through the neighborhoods.   It’s a brisk day and when the wind blows, chilly.  I’ve been away from the freezers for too long. 

I feel better.  Instead of sitting on the couch thinking about my tummy ache, I have to be doing, keeping busy.  The lesson from today is to call myself out when I start feeling sorry for myself.  I have some challenges lying ahead over the next four months.  But I have an excellent prognosis, world-class doctors at a world-class treatment facility (the radiation machine at DFCI is the only one of its kind), and superb local medical support.

Even more, I have the love, support, and inspiration from you – my friends and family.   I have so much to be grateful for in my life.  That is my focus.

Love…

Richard

March 11, 2010 – Truce with morning blues

Post hospital vacation, I’ve woken up with a serious case of the blues.  Like everything else during chemo, it’s an unconventional blues, one in a foreign language.  If I were to sing it (now there’s a really scary thought), it would be in the key of C# minor.  I can’t find this blues on any color map.

I just feel it, the combination of fatigue and emotional release, of the slow bounce from nadir point to hunger.  I feel it.  I can’t let it control my day.

So, I have devised a truce with the morning blues.  I wake up and wash up, muddle into the kitchen to grab a vanilla Boost that I drink while checking my email and favorite sites.  At this point, I want nothing more than to lie down and let the blues shake me back to sleep, sleep at this point I need less than activity.  Instead, I keep busy.  This morning I wrote for while, made a double portion of Cream of Wheat and let it cool while I emptied the dishwasher.  I ate my Cream of Wheat and the blues faded.  I leashed Rudy and Lacey Dog up and we took a walk.  We were going at a nice pace until it started to rain on the loop back home.  Lacey Dog, she loves the light rain and slowed to smell each clover (well, not clover, but let’s say it was.)  She and I had a conversation about our walking pace and she agreed to pick it back up.  We returned home and I laid down for a power nap.  I rested for twenty minutes or so, but even with the excellent help of Rudy Dog snuggled into the crook of my arm, I didn’t sleep.  I felt a little tired, but not fatigued.  Ann arrived home from work; naptime was over.

After lunch, we headed over to Dr. S.’s office.  First Dr. S. examined the lesion on my hip, which he now terms a “big pimple.”  I love medspeak.  He decided to drain it and send the puss out to be cultured.  As he thought, with white blood cell count up, the pimple had grown significantly.  A little cut with small scalpel, a little gathering of liquid, a bit of expression, and it was done.  It looked much better.   Then, we went to the infusion room and I got a liter of fluid to perk me up a bit.   Fluids are a big help in my recovery from the hospital vacation.   And I especially want to feel good for tomorrow and the weekend.

Tomorrow, we’re going to Chatham on Cape Cod for a three-day break.  Cancer took away our February vacation; this will be a nice pause in midst of the treatments.  On the way to the Inn, we’ll meet up with Lynne & Alan for lunch.  The weather is predicted as rainy and windy, but the weather on the Cape is volatile.  Hopefully, we’ll have clear skies for a couple of beach walks.  At the very least, we can sit front of the roaring fireplace in the lounge.  I’m really happy that Ann will get this change of pace.

Deb just dropped by with butternut squash soup with pureed organic vegetables, a real treat – thanks, Deb!

Congrats on your book being published, Rozzy!  You go, woman!

I feel a good kind of tired tonight, tired not fatigued.  Thanks everyone for your support and kind wishes.

Love…

Richard

March 10, 2010 – A bit of advice…

Slept like a log last night.  My hospital vacation took a lot out of me.  Woke up still tired and in a blue mood.  The oral antibiotics I started after leaving the hospital were doing a number on my stomach, already compromised from the chemo.

Ann & I headed to Boston and Dana Farber to meet with the radiologist.  He gave us more details on the preparation for the treatments and walked us through the chronology of the seven weeks.

We returned to Worcester and had a quick late lunch.  Then, we went to an appointment at Dr. S.’s office (the Worcester oncologist.)  We met with his Physician’s Assistant.  They took blood to check my white blood cell levels (9.5 = excellent for today) and gave me a liter of fluids to hydrate me.  I feel good after hydration.  The PA consulted with Dr S. who was out of town.  He eliminated the oral antibiotics and just the thought of not taking them (and enduring their side effects for the next six days) gave me a real boost.  By tomorrow, my digestive system will be back to chemo normal.  I’m a much happier camper.  I really like the team at Dr. S.’s office.  They are friendly, warm, and more than competent clinicians.  It’s wonderful to have them around the corner.

Ok, now for my advice.  Without going into great detail, a member of the hospital’s medical staff, a Hospitologist, was assigned as lead doctor for my care.  She consulted an Infectious Diseases specialist, and we added Dr. S. as an oncologist consult.  We could not get Dr. S. changed to the primary due to hospital policy.  My body is not a conventional body while undergoing chemotherapy, especially my immune and digestive systems.  So here are my words of advice: if you need to go to the hospital due to a fever, be certain your oncologist is assigned as your lead and primary doctor.

Tomorrow, we see Dr. S.  He will take a sample of the lesion on my hip.  He thinks the lesion in conjunction with my low white blood cell count caused the infection.  It will be good to know.

I’m not returning email yet.  My focus on the coming days is to get stronger.  Next and final round of chemo starts March 18th.  I’m waiting for that luscious feeling of hunger for every food in sight.  My goal will be to get weight back on and ingest a lot of protein.  Such fun!

Love…

Richard