Roller -- Coaster

The past two weeks have been grueling, although Thanksgiving day was a welcome respite from all that preceded it.  After a rocky start last Monday, Jim finally had numbers high enough to allow them to do the first apheresis.  All week his blood counts kept improving (okay, so they kept pumping platelets and whole blood into him to bring the counts up!)  Friday, he had improved dramatically (the platelet count had gone from 1 to 43 *(50 being what a healthy person has; it has to be 30 to try to harvest he stem cells).  We were feeling just a little cocky, having such success in the blood count department.  But then a call came from the hospital, saying this Monday they will evaluate whether he may continue on pheresis because the amount of stem cells he is producing is inadequate.   Back down the in the emotional elevator shaft to the basement. Bump.  This isn't the end of the effort to do a stem cell transplant.  It just prolongs this agony and throws question marks all over the place.

As a side note, Jim's hair is about 75 % gone, including a lot of his beard.  He is handling this with the same philosophy he long ago espoused regarding snow removal... God put it there, he can take it away.  However, he is leaving a Hansel-like trail of whiskers everywhere he goes.  I saw his clean-shaven face for about 4 months in 1968.   Then he grew the beard, and he hasn't seen his actual chin since. Our kids have never seen his face before. With it falling out at a rate of 60 strands a day, a more torturously slow opening of a dubious gift there never has been.

For my part, the "Mom" gene has prompted me to start carrying (dragging, actually)  a huge quilted bag containing all the goodies anyone could possibly need, from peppermint flavored dental floss to gluten-free cookies to juice boxes. A sticky lint-remover is perfectly gagging on the all the hair falling on the collar and front of Jim's black top coat.   Speaking of an exercise in futility!  I have reading material, writing material, a hypodermic needle with Jim's Neupogen shot, rolls of coins,  and a gas mask. (not really... just checking if you were paying attention!)  I also am regularly rummaging around the bag trying to find my nemesis, the damned parking garage ticket. Unless it is stickered by the receptionist, it will cost more to get the car out than we originally paid for it.  And because I am somewhat distracted these days, (!) my inner masochist never puts it in the same place twice.  So into the bag I dive, thinking how handy a miner's hat with a light would be.  Then come the little prickles of sweat on my forehead.  What happens if you can't produce a ticket? Irrational panic sets in;  I am fretting about getting the car released while Jim is getting another unit of platelets.  Priorities, Linda.  Snap out of it!  

Once in the cramped pheresis unit, I sit as compactly as possible... not unlike flying economy class on a cross-country flight.  Quilted bag tucked under my chair, coat under me, purse hanging from the side of the chair, glutes contracted to reduce the overall profile.   The temperature in the unit averages about the same as the surface of the sun, so periodically I leave to grab a gasp of cool air.

It strikes me that cancer is the perfect example of Political Correctness.  In the unit, there is a girl with a guide dog on the floor next to her bed. In the bed next to Jim is a young guy, not yet thirty, I would guess, immersed in typing on his cellphone.  A woman patient, speaking in a somewhat loud voice orders lunch on the phone, specifying gluten-free. My ears perk up.  Turns out she has been gluten-free for 12 years.   Her lunch arrives.  The frankfurt looks like a shriveled finger, the roll is shedding lots of crumbs on the plate; she is NOT a happy camper, and doesn't much care who knows it.  That's the thing.  This experience of being ill can drag down a usually cheerful person, but it rarely improves someone who starts out miserable.  Still, I am amazed by how, at least on the surface, people go about their visits with dignity despite baldness, and consideration for others even though wearing a face mask interferes with their oxygen line.   It really is a testament to the human spirit, because there is enough aggravation inherent in this business of being devastatingly ill to push anyone's buttons.   I'm beginning to understand why it is hard to name the real heroes.

Anyone see a stem cell around here?

Let me begin by apologizing for the format problems blogspot seems to be having. I have lost all paragraph spacings, size and photo capabilities, but I think I should post anyway. Will fix it when the fix is available. (Mom, I hijacked it and altered some settings...'yer back to the normal editing. You're welcome. Love, your favorite....)

Beth Israel has been our family's hospital for over 40 years.  My dad had kidney problems (lost one in an accident as a young kid, another was removed with a malignancy. BUT they discovered he was born with THREE, so they hooked that one up and it sustained him for many years, until it died.  Then, after several years of dialysis, he got kidney #4 transplanted from his brother, Paul, who happened to be an A-1 match.  That one sustained him for ten years or so, and then new and unrelated lymphoma was discovered, and he died one autumn morning 1986, right in Feldberg 5 at Beth Israel.   Fast forward to the 1990's and my mom had a quintuple bypass surgery, and in 1992 got a pacemaker at BI.  Subsequent to the bypass, when she was able to be discharged from ICU to a regular room, fate played another of its little jokes and threaded her stretcher right into the same room in which Daddy had died.  Needless to say, she was removed to another room, post haste. On the happier side, three of Lynn's babies came into the world at BI, and eventually little Drew. 


Through it all, the same light blue privacy curtains with a zippy green and cobalt striped plaid has formed a continuum for me, sort of a visual chicken soup for the soul.    When Daddy had dialysis, same curtains.    Seeing them now is somehow a great comfort.  It is invaluable to have somewhere you can reliably turn to for wisdom and help.  Boston has many fine hospitals, but for our family there is never a question.  I have huge faith in BI, and consequently I feel free to make reasonable requests  and just generally feel I am among family. 


Jim was supposed to have the pheresis Monday, but his white cell and platelet counts were way too low so instead they pumped 2 units of blood and one of platelets into him.  We went back Tuesday,  and the story was the same. Still too low! And so it went all week.  Fast after midnight, be there at 8, get a blood test, and tell him it came up short.    Bless him, he stays the course, never complaining.  His arms and legs are so full of needle marks he looks like a lotta miles of bad road. And he has enough alien blood coursing through his veins to nullify his birth certificate.

In terms of frustration, exhaustion and disappointment, this week may have been the worst to date.  One thing we know for sure, the December 1 date for transplant has been pushed back.   On Monday, we go back to repeat the blood tests,  but we really need to redouble our prayers and positive thoughts. We are gathering here for Thanksgiving, with 18 of us bowing our heads. We only have seating for 12, so the words "Stuffing" and "Squash" will take on whole new meanings.  Do you think bleachers would be tacky? Given the foot ball connection, could I make it work?   What if I put a platter of buffalo chicken wings and a keg in the living room and leave the WII on?    I'm undaunted by tradition... outgrew needing to make the puff pastry cornucopia abounding with all kinds of breadeliciousness long ago. Been there, did that, got the tee-shirt.  Eat your heart out, Martha.  Given our housing outlook, next year we may harken back to the Wompanoag tradition of sleeping outside in a tent.  


But for this year, the turkey will tango with the gravy (gluten-free and regular); the stuffing will come in three varieties (vegetable-free, gluten-free and just plain free)   It will be a communal undertaking, with potatoes coming in the door all mashed, and pies galore, both "please refrain from gluten" and "not so much". Overall conviviality will be the order of the day, unreasonable hostess that I am. 

We are blessed with a family who often gets along extremely well, and actually enjoy spending a day together, minus the few who prefer the game on the tube.   Thank you, God, for this family, for keeping us all alive for another year, for uniting us with very special people who carry us through the tough days, and who make the easy days some of the very best of our lives. 


Happy Thanksgiving, you kind folks who follow "A Change of Plan."

Cautiously Optimistic

After the usual, now-expected little glitches, Jim is officially under way for his SCT. Last Thursday, the nurse in charge of the clinical study administered the first of two vaccinations customized with his own blood cells. These have been kept frozen since April when they were extracted from him, and are now "under his skin." Next time they inject him with the remaining serum will be after the SCT. That big day is now expected to be December 1, subject to change depending on whether they can fish out ("fish out" isn't the actual medical term. "Aphereis" is ) enough stem cells in only one day or as many as five. It's hard to keep one's hopes in check. Of course, we won't know until the end of February whether the effort was successful in creating a full remission. We're assured they extract enough stem cells for TWO SCTs so this could happen again within the year, but only if the first falls short of expectations.

Jim spent a night at the Beth Israel Hilton, getting Cytoxan to build up his stem cells and suppress his immune system. Jim looks amazingly well, although ten of his newly found pounds have slipped away again . (looking under the bed)

His hair and beard will start falling out in a few days, due to the huge hit of Cytoxan they gave him. We had planned a coming-out party for his face last Sunday, which coincidentally was his birthday. No one has seen his whole shaven face since 1969. Unfortunately he was under the weather, and came down just long enough to eat some meat and potatoes, then went right back up to bed. Later in the week, I convinced him to let me trim it all back some, the doing of which made him look 10 years younger. Of course, that would be more impressive if that didn't still make him 56, but we'll take it! Later this week we will get out the shaver and finish the job--- after we take a few photos.

For the coming days, the main event du jour will be administering a shot of Nupogan to enrich his stem cell count in anticipation of the apheresis starting on November 16.

So how is everyone holding up now that the transplant is approaching? Jim seems to be handling things with his usual Spock-like aplomb, neither excited nor anxious. His approach to life is like sailing a boat in a swimming pool. No waves, no gales, just predictable calm. Wish I were more like that. I'm still pretending the whole thing isn't happening. Nice to have one rational person in the family, even if he is usually high on who knows what.

I have been toying with the idea of trying to resurrect Dinner Belles, the catering business I started in the 1980's. Free-lancing as a caterer would give me flexibility and if I could convince some clergy and funeral homes in the area to recommend me, maybe we could keep this roof over our heads. I find catering funerals perversely satisfying. The mourners are always so delighted to find free food! I have done other kinds of occasions, but of late, this is my niche market. The downside is the lack of repeat business!