I haven’t felt much like writing since I got the news that I no longer was 100% engrafted. I’ve been there before and the end-game is no fun. I am doing everything they tell me to do — especially downing three liters (more or less) of liquids every day.  Every other day, I get to see new blood counts. I hang on the results. Right now things seem to be holding but I am looking for improvement, so I’m not getting what I want and growing a bit whiny.

In any event we will get to go home in about three weeks and I am looking forward to  better dining options and getting to see more people — maybe even the opportunity to tickle a grandchild.

About two weeks ago we saw the couple whom I described in So, You Think You’ve Got Problems in the ITA. She was in a wheelchair. We haven’t seen them again and can’t ask anyone because of medical privacy issues. We hope they are okay. Knowing they were able to keep her alive was an up.

As you can see, I’m not in a humorous mood. I have a bone marrow biopsy in 11 days and I always get nervous before that happens — as well as afterward, while I wait for results. That’s one of the things about cancer. There’s always a test or results around the corner and you just know that it’s a game of Russian Roulette. One day the bullet will be lined up with the barrel and boom, you’re terminal. Meanwhile you bide your time waiting for a miracle cure and dealing with stress and anxiety. A prognosis from hell. A war that never ends, kind of like Afghanistan.

The three of us, him, Bonnie and me began talking. His wife — thirty years old — was just hospitalized. She has aplastic anemia. She’s producing no red blood, white blood or platelets. They have two children, three and one. Six months after the birth of their second child she went back to work but was very tired and bruised easily. After a few days, her supervisor told her to see a doctor. That’s when it was discovered.

She was about to undergo a transplant when she developed appendicitis. Given her blood counts, they couldn’t operate. Her appendix burst. It  seemed hopeless. As a last resort they pumped her full of antibiotics. To their amazement, the antibiotics dried up the infection and miraculously, she was saved.

But that was just their first hurdle. Next came the transplant. On the day before, the couple married.

But the transplant ultimately failed to fully engraft, a boost failed to correct the downward track, and now, exactly a year later, they were back fighting for her life. As we spoke, they were pumping her full of blood products in hope that they could perform a second transplant.

Later, we related this story to one of the nurses in the ITA. She said they were seeing a lot of young mothers who had developed a blood cancer shortly after giving birth. She speculated that it was hormonally induced. I’m sixty-five. My kids are grown and I got to watch it all. My heart goes out to that beleaguered family.

You’ve heard about leukemia and lymphoma, I’m sure. But what you may not realize is that the curative treatments deliver day upon day of fatigue and energy loss. But why should you care? You’re on the sofa anyway. You’ll have enough in reserve most days to punch commands into the remote. Trust me.

I’ve lost nearly twenty pounds in thirty days and I don’t have exercise to blame. Also, the chemo and radiation act as a powerful ally in the fight against excess weight. They make food taste terrible.

So whether or not you have one of the dreaded “L”s you might want to give a thought to a strong dose of radiation, chemo and associated pills. Get on that couch and lose those unsightly pounds.

Side effects may include nausea, diarrhea, constipation, shortness of breath, swollen ankles, edema in the lungs, headaches, renal failure, liver failure, heart failure, strokes and death. But what the hell, you’re well on your way with that stuff anyway.

So, Saturday, June 5, I’m totally wiped. I sleep from two in the afternoon to nine the next morning and wake up wiped. Bonnie calls the ITA (the Infusion Treatment Area) and they tell us to come right in. Soon I have a fever. They try some Tylenol but the fever and chills keep bouncing back. After several hours, Dr. Weng admits me to the hospital. I’m thinking, well maybe a day or two at the most. That shows I’m not thinking.

By Monday, I’m loaded up on a bunch of antibiotics. I’m pissing in a plastic urinal so they can measure every last drop coming out of me. I want to sleep but there’s no way. The parade never ends. Six a.m. blood draws. Seven a.m. vitals. Eight a.m. a tray with something they have the effrontery to claim is breakfast. Tiny cans of over-sweetened fruit-flavored juices. Stuff that sucks all the moisture out of your mouth. Nine or ten, it’s rounds. The docs hover over me and promise they’ll get a handle on this. They spend forever going over the meds with the nurses and Bonnie. (She gave them all the right info  on Sunday night but the computer wouldn’t accept it. The computer is frequently wrong.) I’d like to use the urinal, since they’re also pumping me with fluids but it’s a bad time. Before you know it, it’s time for mid-day meds and another set of vitals. Next thing I know, they’re bringing in a tray with “lunch.” I don’t want to eat. I’m chilled. There’ll be more vitals soon. Afternoon meds.  Housekeeping. A visit from the dietician who wants to know whether I’m eating and pooping. (In fact everyone wants to know about poop.) As the clock rolls around to five or so, it’s time for blood draws. Then another tray of generic “food.”  Evening rounds follow. Interspersed over the first several days are chest X-rays and CT scans. All the while, I’m bouncing a fever between normal and 100.8F. I’m chilled and sweating.

But enough of the kvetching. I was privileged to have some very nice and interesting nurses. Lisa is an upbeat Irish woman married to an Iranian. They have a three-year old. Her mum still lives in Galway, I think. She reminds me of the protagonist in Brooklyn, by Colm Toibin. She tells me, when Bonnie is out of the room, “You’ve got a good woman there.” Aracely is a middle-aged Salvadoran woman who started her medical career as a nurse’s aide many years ago. In the interim, she’s become an RN with a certification in oncology, which is no small task. She’s living proof that the anti-immigrant yahoos are really harming this country. And then there’s Brian, a Portuguese son of Fall River MA. We spend a lot of time lamenting the psychology of buying into the Sox, Bruins and, to a lesser extent, the Celts and they take us to the limits, year after year, only to collapse. What can you do when you’ve grown up in Eastern MA?

On Wednesday, Dr. Logan, who originally participated in diagnosing my PLL says there’s a possibility that my central venous catheter may be causing my infection. He pulls it. I need a peripheral IV. I need two IVs. One goes in fine. The second, not so fine. They call in the charge nurse who treats my arm like a glob of pizza dough. She crams the needle in. My arm is not happy. It protests and requires hot packs for the rest of its stay in the hospital. But fortunately I get a PICC line two days later and the IVs are history.

Then on Thursday, Dr. Wes Brown, a maestro of infectious diseases in transplant patients enters, stage left. She’s the one who saved my life during my shingles attack in the midst of my first transplant. She changes some meds.. Now I’m on antifungals and antibiotics. One of these, I’m told causes hallucinations. I’m game — except that in the back of my mind, I know these are Big Phama hallucinogenics.

Shortly after, I take a walk in the corridor and to my amazement, the edges of all the doors are flashing on and off with strings of Christmas lights. They’re pretty. But it is nowhere near Christmas and besides, you couldn’t open or shut the doors without crushing the pretty lights. Okay, Big Pharma. That the best you can do?

By the following Monday, my episodes of fever are diminished. I’m no longer sweating at night, or chilled. The docs on the team hint that I’ll be out later in the week. We start thinking Thursday or Friday. The next morning they tell me I’ve matriculated. Four hours later I receive my discharge papers. I vow to not go back to stir.

Bonnie told her side of the transplant story yesterday. She left out a few salient facts from my point of view. First, on transplant day, I began with 18 minutes of radiation. By minute 17, I was sweating as if I was in a sauna. I had to stand throughout and nearly collapsed. They had to stop the bombardment and bring me a chair and a fan so I could recover enough to stand for the last minute. Then they rolled me out in a wheelchair. It was no walk in the park. This was total body irradiation, which means I got zapped in places where, for me, the sun don’t normally shine. Last night it felt like sunburn in those especially sensitive locations. A gift that keeps on giving.

I don’t remember much of the infusion. I was out of it. Now everyone tells me I smell like creamed corn (because of the DMSO preservative they put in with the cells). I can’t smell it though. I’d like to get just one whiff to know what they are talking about. It’s a little embarrassing running around smelling like creamed corn. They say it will go away soon. That’s fortunate. I don’t even like creamed corn.

There was a big up yesterday when I woke from one of my many naps. Mimi was on video chat. I sat down in front of the computer and she came running toward it, saying “Baabee” or something close. She recognized me, remembered my name and was happy to see me. It makes going through this worth it.

MAY 14, 2010: I just received my first infusion of Fludarabine, a chemo that is supposed to destroy my immune system along with a hefty dose of radiation next Tuesday. So, I am committed. I’ve plunged in. According to Dr. Miklos, the stats say I’ve got a fifty-fifty chance that the disease will make a comeback. If I don’t take this chance, I’ve got a hundred percent chance that I’ll relapse.

When I ponder my odds, I’m reminded of a story I heard maybe fifteen years ago about an octogenarian multimillionaire. In his late eighties, he took up with a Playboy bunny who was one-quarter his age. His friends all shook their heads. Rumors abounded that she was cheating on him. Finally one of his close friends got up the courage to talk to him about it, hoping that he could bring the old fellow to his senses.

“Don’t you know,” his friend said to the old man, “she’s going out with younger men — making a fool out of you? Everyone is laughing behind your back.”

The old man nodded and smiled. “Of course,” he said after a short chuckle. “But as a businessman I also know that ten percent of something is a lot better than a hundred percent of nothing.”

That’s how I feel about this ordeal I have just embarked upon. I’ll keep you posted.

Shortly after I returned from D.C. it was time for my semi-annual blood tests. Oops. There was a teeny tiny problem. Seemed like my platelets (the little guys that stop bleeding) were way low. Indeed, they were half of low normal. It had to be either a mistake or some type of infection. Nothing serious. I was still feeling fine. We decided to retest.

Shortly before Thanksgiving, I got those results. The platelet count was even lower. Now they were only one-third of low normal. Something was up. Dr. Miklos opined that maybe it was a result of losing my graft. I had a bone marrow biopsy that confirmed the loss of most of the graft. Dr. Miklos prescribed steroids. That didn’t work. Then he tried Rituxan. That didn’t work. He said that I might benefit from having a procedure called DLI — donor lymphocyte infusion, or a “boost,” — an infusion of some donor cells.  But for a DLI, I needed to get some more cells from my intrepid donor, Jennifer.

Jennifer has been a real blessing and we’ve had a very nice email exchange since the powers-that-be allowed us to learn each other’s true identities, approximately a year after my transplant. I hated to impose, but Doc Miklos said that the DLI “boost” required another  donation from her.

So they called her up and asked. She told them that of course she would help, but wasn’t there some rule they had that donors couldn’t be pregnant? “Yes,” they said. And she said something like, “Wow, you just caught me in the nick of time. My husband and I were planning to start trying next month!” She volunteered to hold off until after another donation of stem cells, which happened the second week of January, this year.

Meanwhile, we spent a wonderful family getaway in Palm Springs with complete family including in-laws but the star of the show was granddaughter Mimi. Unfortunately, I was pretty fatigued and had to nap a lot. My blood was obviously screwed up. I was having nose bleeds that one night forced me to the local emergency room because it wouldn’t stop. I also was bleeding from my gums. What was going on?

I had another biopsy in preparation for the boost and we were all set to go. I was admitted to the hospital and only hours away from the procedure when Dr. Miklos walked into my room. “I’ve got bad news and good news,” he said glumly. “The bad news is the boost is off. The biopsy showed you have T-Cell Leukemia. The boost won’t work on that.”

I know about T-Cell Leukemia. In April 2006, I was mistakenly diagnosed with it because I had a population of weird T-cells. The prognosis is seven months untreated. Maybe a year with treatment. “What’s the good news?” I asked.

“The good news is that they didn’t just take a boost supply of stem cells from your donor. We got enough to do a whole new stem cell transplant.  It’s a complete graft.   If you decide to do it, we will do a more rigorous preparation this time.”

I wasn’t sure I wanted to go through that again. A hellish prep. Then a hundred days in semi-isolation. A chance of dying right then and there. More risk of graft versus host disease that can kill you or make the rest of your life miserable. But then, that week I’d just spent with family was well worth it despite the fatigue and bloodshed.  Mimi was a laugh a minute. My daughter Julia was expecting in February. I wanted to see a second grandchild. I wanted more time with Bonnie, my family and my very large village of loving and caring friends.

I spent about a week thinking it over. I know that we all tend to say things when we are feeling relatively okay, that we would never want to be put through this or that, we’d want someone to pull the plug. I was feeling some of that. Yet, there was a part of me that said: “Roll the dice. All you’ve got to lose is a couple of months and the up-side is so big.”  So that’s what I decided.

Later in January, I began my second course of Campath, the monoclonal antibody that got me into remission for my first transplant in 2006. I’d forgotten how uncomfortable it made me. It knocked me out. Nighttimes, I’d sweat through pajamas. Daytimes, I’d be constantly freezing. My skin itched and broke out in rashes. I developed a CMV infection and then another different infection. I was sick and tired a lot of the time. But slowly, my blood counts improved until finally things looked like they were turning around.

On April 12, I had yet another biopsy. The results showed that I was/am in remission and eligible for a second transplant. I’m working out with my trainer, Angela. I’ve returned to yoga — although I’m nowhere near where I was when I left off. On April 27, I scored in the 94^th percentile in a pulmonary test so I guess I’m still a blowhard. I write this just two weeks pre-transplant.

Mimi comes on Friday and gets to meet her new cousin, Silas, on Saturday. I’ll get to see it. I hope I get to participate in more of the same.

I had this naïve hope that with the bone marrow biopsy and a PET CT Scan I had last Friday, I’d be reporting definitive news. To quote some Frenchman named Alphonse Karr, “The more things change, the more they remain the same.” To that, I should add that the glass is still either half empty or half full. And since I’m on the subject of clichés, I feel the need to kvetch once more about the puerile phrase craze: “Cancer survivor.” It is like those of us with cancer have this need to be talked down to. The minute you get your diagnosis you have qualified as a survivor. Want proof?

I’ve taken to reading the obits (To see whom I have beaten, or who has beaten me, depending on how you look at it.) The proof is right there. The actual survivors, the ones who get to send in the obits, persist in using the term cancer survivor to describe their dearly departed, even in the damn obituaries. I’m waiting for my friend and neighbor, Ellen Rosenthal, to take a photo of some headstone in some obscure cemetery, possibly a French one, bearing an epitaph that says: “Here lies Mssr.’X’ cancer survivor.”

But wait! I’ve got more proof. I’ve been perusing magazines looking for a place to dump my journals from the transplant ordeal. I thought that one of those cancer mags that they virtually force on patients might be a good choice, given the topic. But ever-contrarian me, I ran right into a stone wall. Their criteria for submissions include the admonition that the story must be “upbeat.” Can you imagine? No one can ever die in their wonderful, glossy world of cancer. No one can ever have life altering complications. Everyone gets back on the golf course and shoots below par. What a bunch of namby pambies they think we must all be that we can’t just read and learn real shit. We have to live in la la happy-ending land according to the editors of those rags. Glass half-full ain’t good enough for them. Oh no!

That brings me back to Alphonse Karr. How so? You may well ask. The answer, in a word, is: immortality. He coined that little homily quoted above and was dubbed a philosopher. What an easy way to gain eternal recognition! Just one good quote is all it takes. So, I’ve decided, given my circumstances, to corner the philosopher market in gallows humor. After sixty-two years and three different species of cancer, I have convinced myself that I have both the temperament and qualifications suited for this task. (Not to mention the time, since my doctor has told me to stay away from courtrooms — effectively disbarring me.) So, I’ll try this one on you. “The only good cancer survivor is a dead cancer survivor.” Send in your cards and letters, kids. Let me know how you like it.

Actually, my circumstances currently are not all that bad. The PET/CT Scan and some other stuff they do to all that blood I give them could not locate any CLL. But just because their fancy shmancy equipment can’t find it, it doesn’t mean it isn’t there. Sort of like Osama bin Laden. Chimerism was not that hot. Seems to be heading south, like a pod of gray whales in Autumn. Doc isn’t worried though. But hell, he isn’t the cancer survivor. I’ll leave the details to my resident, glass-half-full expert, Bonnie. Anyway, I’m feeling pretty darn good and enjoying my negativity a whole lot.

Some of you have asked for another song. Okay, already. This is sung in thirties’ style mellow blues, not a lot of bass, think Ella or Nat. Very mellow. Jazz chords. Try a piano or at least a Les Paul. You’re in one of those dinner clubs with Nick and Nora Charles. You know, the ones with the tiny shaded lamps on the white, cloth covered, little round tables. Bone china. Silverware. A maitre d’ who knows your name and gives you a “good” seating. Evening dress. Everything in black and white. Noir. You must remember this. A kiss is just a kiss….

I got me them bone marrow biopsy blues,
‘Cause they never seem to bring me good news,
And then them PET Scanners,
Start to drive me bananas
So come on folks, walk a mile in my shoes.

(Chorus) (Everybody sing!)
Cause we got us chimerism.
We got us graphs an’ charts
As much fun as communism
For us old farts.

They stick that big needle in your hip,
Let their syringe take a sip
Of that marrow in your bones,
Checking X and Y chromosomes,
To give them doctors a tip

(Chorus)

So pal kindly fill my glass
But not so full it’ll kick my ass
An’ not so empty I’ll want more
‘Cause we each get us but one pour
Before it’s time to pass.

(Chorus and fade, fade, fade.)

Happy trails to you!

Nothing is happening here. What it is ain’t exactly clear. But the chimerism shows only a little progress in the engraftment. It is basically in the same place as it was (I was) two months ago. I don’t know what to make of it. I’m not losing the graft, but I’m not getting my strokes with this kind of news. I was hoping for extra bases. Instead, I got a walk. I don’t feel bad, but this isn’t going to help me feel good.

I’ve just been on the phone with two friends, one on the East Coast and one on the West Coast. One is 64, the other is 52. They both have cancer. They both have spouse/partners who have cancer. They both want to talk. I want to talk. That was in the morning. In the evening I spoke to the partner of one of the morning pair. Then I spoke with my friend up the street, who also has had a hairy bout with cancer. It was all cancer all day. Yipes!

We don’t have much advice for each other. Just benign stuff, like “If you’re tired, take a nap.” We like to think that we are somehow compelled to give advice; that if we don’t parcel out a piece of wisdom, we are somehow failing to do our bit to buck up the sick. The truth is that we are all scrambling. We all understand that a cancer diagnosis is a life-altering event. From now on, for the rest of our lives, we’ll be waiting for or going for some test or examination or we’ll be waiting for the results. Talk about anxiety! It sells pills.

All I can say is that it is tough and that coming to a place of peace within one’s self helps. I’m one to talk. When I got my test results, I didn’t feel very at peace with myself.

I want to believe that all I went through was not in vain. I want to believe that I have paid my dues. I’ve taken all my meds — never missed a dose. I’ve stayed away from movies and airplanes. I’ve gone the whole nine yards and as a privileged, white middle-class American, I feel entitled. But damn it, I feel ripped off. I am not at peace. The damn glass is half full AND half empty all at the same time. So to calm down, I wrote a song. It goes without saying that it is what you call “DA BLUES” That means you can sing it the way you feel it at any given time so long it is not in happy-go-lucky Disneyesque. We just ain’t whistling while we work no more.

I’ve got dem yin/yang blues
’cause my graft’s in a snooze.
I ain’t better or worse.
I got a wheel spinnin’ curse.
Will I win, will I lose?

Hey baby, I’m gonna call you on the phone.
Let you know you ain’t alone.
Lotsa friends they’s a kvetchin’.
Seems the big “C”s a ketchin
Their flesh, blood and bone.

Talks ’bout chemo ‘n radiation
Fo’ da boomer generation.
Smoke dat med’cal marijuana
Like you soon’ll be a gonner.
Find some peace in meditation.

Cause of dem yin/yang blues….damn dem yin/yang blues,….yeah dem yin/yang blues. (Fade out…….)

Okay put that in 4/4 time, key of E major, pounding beat, throw in some blues riffs and belt it out with feeling. Louder is better. Remember kids, it always helps to improvise!

The phone companies are making a fortune on this epidemic. It’s a nice sunny day. The weather is warm and flowers are in bloom. Turn off your cell phone and head outside.

On the other hand, no news could mean bad news. Some of you may be assuming that is the case. Right now, this very minute, you would be wrong, but hold on to that thought. I have a new set of tests results coming in later this week, and it is weighing heavily on my mind, i.e. I’m getting nervous. It’s like waiting for admissions decisions to college. I’ll post the scores as soon as they come in.

That brings us to the third alternative. No news is simply no news. Unless you think my hanging around the house, gradually getting snagged into doing little bits of legal work, and writing are news then no news is no news.

In lieu of news, A Gauche Press, like the Chronicle, has decided to fill this site with stories about Anna Nicole Smith, Britney Spears, cuddly orphaned animals, celebrity adoptions, athletes pulling armed robberies and today’s long list of drive-by shootings. It works for them! (No, I’m no longer on narcotics. I always think this way.)

I have residual pain from the shingles that may last for a year. It, along with fatigue, are my biggest downers. Oh yeah, one other downer. I put back the fifteen pounds I lost down in Palo Alto, despite my return to an exercise routine and yoga. I can fill up an entire day down in my little home office or figuring how to meet my quota of drinking 90-96 ounces of fluids every day.

I am thrilled to announce that I am now accepting reservations for visits. Please be sure to call between 5 and 7 p.m. so that I can confuse you with vinyl siding salespeople, or, if you chose, not too early and not too late in the ordinary work day (when I am more likely to be nice to my callers.)