We’re home — very grateful to be here and beginning slowly to recover our strength.  Both of us are completely and utterly exhausted as well as traumatized by the whole experience which was much, much harder the second time around.

On the (really really) good news front, Barry’s bone marrow biopsy of August 16 showed No Evidence of Disease!  When we met with David Miklos on August 20, he was thrilled at the results.  While reading the narrative report from the lab, he kept saying things like “the cellularity is great” and “this marker is great” and he finally said the following two phrases:

“This is as good as it gets” and “Go live your life.”  He also said we didn’t need to see him for 3 weeks and the less we saw doctors the better.

On the bad news front, we finally got the chimerism (engraftment) results late last night and this is what David wrote:

Barry and Bonnie,

Unfortunately, your donor chimerism is decreasing.

We will recheck in 30  days as we decrease Barry’s immune suppression.
Will plan for DLI at 6 months if evidence of disease.  I am working on the High Throughput Sequence (HTS) for B and T cells to determine if you have any disease progression.
The relatively high CD3 is encouraging that:
1) your CD3+ PLL is not rapidly growing, and
2) donor immunity could still dominate.

I wish we had full donor chimerism

David

So here we are again.  Barry feels and looks great.  So far no evidence of disease, but as all of you cancer patients out there know, they never get every last cell and there is always a sword pointed at your head.  And with decreasing chimerism the chances for relapse are magnified. We will try to breathe and stay grateful for what we have now.

We just got off the phone with David who explained further his thinking.   It is way too early to do anything except taper the immune suppression meds, which we are starting tonight.  (He’s been off one for about a week.)  What he is looking for is an “immune response” which will allow the donor’s cells to bounce back and take over.  It is not impossible.  If that does not work, in a few months, and if there is disease progression, he will think about a DLI (Donor Lymphocyte Infusion) or treatment with chemotherapy drugs.  Treating any of this now would be highly dangerous.  As he said, “You sat next to some of those people”.  He’s talking about serious Graft vs. Host Disease which can be seriously debilitating as well as potentially fatal.

So he told us to hang in there.  And we will.  He reminded us that Barry got three good years out of the last transplant, and we are always aware of that, and grateful.  We can never know what the future will bring.

And now for something completely different (which I wrote before we got the chimerism results).

While Barry does not have to wear the HEPA Filter Mask anymore (except when in a medical facility) and is off most dietary restrictions, he still has to follow Miklos’s Ten Commandments:

1) Thou shalt not enter among crowds; be they in the theater, at the movies, or in games of sport
2) Thou shalt eschew public transportation, yeah verily even unto BART
3) Thou shalt not touch, even with thine hands, the person of another
4) Thou shalt not swim or douse thy self in the waters of a hot tub
5) Thou shalt not eat fish or meat that has not been cooked
6) Thou shalt avoid shopping carts and all manner of like implements
7) Thou shalt not imbibe of spirits even unto the fruit of the vine
Thou shalt not fly in airplanes
9) Thou shalt absent thy self from houses of worship yeah, even unto the High Holy Days
10) Thou shalt not whine over the foregoing but be grateful that there are not twenty such Commandments

Barry originally wrote this on his blog (www.agauchepress.com) after his first transplant.  Last year, at the annual BMT reunion at Stanford, another of David’s patients who had happened upon it, presented it as a plaque to David and he has it hung in his office.  When we asked him a couple of weeks ago about some restrictions, he just said “Consult my ten commandments”.

So, we’re back in circulation.  Ready for visits, restaurants (not super crowded ones) and matinee movies.  We really want to see our family and friends.  We’ve returned to our amazing Saturday yoga class and have resumed working out with our trainer.  Barry’s getting regular massages, and we’re making some extremely short-term plans.  I’m returning to work on Tuesday.

We live with the knowledge that if Barry did not have treatment and the transplant he would not be with us now.  In January, when the diagnosis of the aggressive T-Cell Leukemia was made, David told us that Barry could expect to live 4 to 6 months without treatment.

We are so grateful to everyone for their love and support and, of course, the incredible BMT staff at Stanford for their caring and competence.  And also to my work, for the great health plan they provide and for their understanding and support during this more than stressful time.

With love, gratitude and not a little trepidation,

Bonnie

Yesterday we got confirmation that we can move back home the weekend of August 21/22, just a few days shy of 100 days post-transplant.  We’d been asking about this for a while but they didn’t want to give us the OK until Barry’s CMV was undetectable for two weeks, which it now is, and his counts (white blood and platelets) started recovering, which they have.

Last week Dr. Miklos stopped by when we were in the ITA (Infusion Treatment Area). I asked him whether there was any significance to the fact that the same day they did the chimerism (engraftment) test was the same day his CMV was really high.  He said, “Well, think about it.  Who is CMV positive?”  That would be Barry as his donor is CMV negative.  So Barry’s T-Cells (T-Cells fight infection) were mobilized to fight the CMV and once the CMV is gone, her T-Cells can take over. He was very upbeat and we’ve been feeling that way as well.

We are very much looking forward to ending our incarceration, even though it is a lovely apartment.  Being able to have fresh air and normal contact with our family and friends will be such a treat. Barry will still be on many restrictions, although he will not have to wear his HEPA Filter Mask except when in medical facilities.  It won’t be until next May that he will be able to get on an airplane, take public transportation, hug friends, go to public events such as theater, etc., etc., etc.  But we will have major portions of our life back.  I will return to work after Labor Day and we will not be spending 24/7 together.  Not that that’s been a problem at all, but we are really starved for the company of others (that would be all of you).

I will keep you posted.  Barry will have a bone marrow biopsy (his 13th) on August 16 and we will get results (chimerism and cancer) about a week later.

Much love,

Bonnie

PS — Barry has just posted to www.agauchepress.com

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.

Today is exactly five years from the date of Barry’s diagnosis of CLL (Chronic Lymphocytic Leukemia).  The good news is that he’s still here, feeling good and looking good.  The bad news is that we’re still dealing with this shit.

Last Monday we got the results of the second chimerism (engraftment) test and the engraftment had gone down.  Needless to say, we were very upset, as were the docs, especially since Barry lost the first graft which led to a nastier and more aggressive cancer.

What the doctors think has happened is either because of the CMV (Cytomegalovirus), a common infection for immune-compromised people which he contracted soon after the first chimerism test, or because of the Gancyclovir which treats the CMV, the graft has been impacted.  Remember that Barry had the terrible zoster (shingles) infection and Dr. Miklos has always thought that might have affected the first transplant.  The Gancyclovir depresses the white blood count (and the marrow) so that might be another factor in the current graft loss.

Last week’s CMV level went way down.  (They test every Monday with results on Wednesday or Thursday.)  Everyone’s very happy about that.  They’re doing several things to attack this problem and hopefully the engraftment will go back up.  Apparently this can happen.

1)  Barry’s been switched from Gancyclovir to Foscarnet, another anti-viral which does not depress the white blood count, but is really hard on the kidneys.

2)  He’s getting IVIG infusions (immunoglobulin which fights infection) once a week.

3)  If his white blood count does not recover on its own, he will get shots of Neupogen.

Today is Day 68 and the next chimerism test will be on Day 90, with results about a week later.  Waiting, waiting, waiting.  Breathing a lot.

Dr. Benjamin, the attending in the ITA this month, says “we’re threading a needle.”  Obviously there are no guarantees but there’s a plan based on a set of hypotheses.  So we are hoping for the best.

Our life here in Palo Alto has improved.  The stir-crazy, fresh-air deprived days are hopefully over.  Since Barry is feeling so much better and is also stronger, we are going for long walks and having outdoor visits from family and friends.  They lift our spirits.  We also sit by the pool and read.  We’ve both been reading a lot and watching many movies.  I’m finally able to work out regularly with my wonderful trainer, Angela.  Visits from our children and grandchildren, and photos/videos sent regularly and posted to their blogs bring us great joy.

For those of you who are looking for Barry’s postings at www.agauchepress.com, do not feel deprived.  While he has not been writing too much about the transplant experience, he has been finishing the final edits on his book, “Flight of the Sorceress”, which will be published as an e-book, perhaps as early as September.  We’ll keep you posted.

As always, your emails, cards, phone calls and comments on the Web site are welcome and incredibly meaningful to us.

With much love and quite a bit of hope,

Bonnie

JUST THIS

DON’T KNOW

PRESENT MOMENT

ONLY MOMENT

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.

We received terrific news on Friday.  Barry is fully engrafted, meaning his (angel) donor’s stem cells have taken over and he can now  begin to recover.   This is a milestone that he never reached on his first transplant and it is the reason he was given a tougher pre-transplant regimen this time.  David Miklos, who came up to the ITA to celebrate with us within 3 minutes of getting the news said that maybe the fevers he was having were engraftment and not infection.  We’ll never know.  There is so much of this that is a mystery to us, and unfortunately, still a mystery to the doctors as well.

So while this is wonderful news, there are many obstacles ahead of us. Barry’s liver function is impaired.  They have discontinued some medications to see if they could be the cause, but if it doesn’t get better, he will have a liver biopsy.  This could be graft vs. host disease and no one seems really freaked about it, so I will not be freaked about it.  The doctor who gave us the engraftment news (he popped his head into the room we were in and said “Barry Willdorf – 100% engrafted!) said that prednisone might become Barry’s new best friend.

So there’s graft vs. host (GVHD) both acute and chronic to perhaps endure and hopefully successfully treat (can be fatal). There’s the underlying cancer that no one really believes is ever completely gone, but with a new blood supply, now can be fought.  There’s chance of relapse (50/50 within the first year post-transplant).  There’s the risk of infection for a long time.  Immune systems don’t bounce back easily.  It takes one to two years and there’s no test to let you know when it’s functioning again.

And Barry’s still feeling lousy.  He’s very weak, fatigued, having some intestinal problems, still some low-grade fevers, headaches, etc.  Yesterday we spent 8 hours at the ITA while he got two units of blood.  Many of you have asked what happens when we go to the ITA (Infusion Treatment Area) at the Cancer Center.

1.  We wait for his appointment

2.  He gets weighed and “roomed” (either in a chair in a big room with other patients, all BMT or Hematology, or in a private room with a bed if he’s feeling poorly or has an active infection)

3.  His nurse takes blood through his PICC line (his central venous catheter was pulled when he was in the hospital in case it was causing the infection)

4.  They start a liter of fluids.  Barry has to have 3 liters/day of fluids to counteract the cyclosporine immunosuppresant he’s taking and he might as well get one while we’re there

5.  He often gets one or two bags of magnesium.

6.  After about an hour we get the blood results, CBC, differential (BMT) and chemistries and maybe some other treatments, like yesterday’s red blood.

7.  We see a PA, usually the same one, and he gets examined.

8.  The nurse goes over all of his medications and dosages with me

9.  Sometimes we see a BMT doctor, the attending, or Wes Brown comes over to examine him and chat with us

I read a lot while he’s there, sometimes listen to music if the room is too noisy, and often take the time to go to the grocery store and do errands.  I only leave if there’s nothing happening, if we’re not waiting to see someone or for some significant results, because those would definitely occur while I’m gone.

All of the doctors are very reassuring about Barry’s symptoms.  They keep saying “After all you’ve been through, with two transplants, two courses of Campath, chemo, radiation, etc., of course you feel lousy.”

So is this transplant harder or easier than the last?  I think harder.  Even though Barry’s hospitalizations haven’t been life-threatening like the last time, this is the second-time around, and the risks are higher.  (David Miklos also said the other day that very few people get 100% engraftment on a second transplant — glad he didn’t tell us that before.)  It’s completely exhausting and also a very isolating experience.  We’re living in a beautiful apartment complex, with nice places to walk, a pool, and a hot tub and the weather has been glorious, as seen from our closed windows.  I guess I’m sounding whiney.

In reality, we are very encouraged.  While before Friday we were guardedly optimistic, now I would say that we are cautiously optimistic.  Not sure if that explains it but it’s the best I can do.

With much love,

Bonnie

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.

Barry and I got home on Tuesday after spending 9 days in virtual isolation in the hospital. He had fevers, headaches, chills, sweats, intestinal problems, etc., not to mention the anxiety and depression. While we may never exactly know what the diagnosis was/is, he’s much better. The theory we like the best, according to the amazing infectious disease doc, Wes Brown, is that he had an underlying infection, probably sinusitis, and then had fever reactions to IV antibiotics, probably Vancomycin.

Because Barry has no immune system to speak of, any tiny infection can be very dangerous. That’s why we can’t see people here in Palo Alto, except for our immediate family and some very close local friends who can spell me when I need to do errands, or do something for myself (what a concept!). Barry is only allowed to be in the apartment, in the car on the way to the hospital or Cancer Center Infusion Treatment Area (ITA), or outside taking a walk. When he is anyplace other than inside the apartment, or inside the ITA or a hospital room, he has to wear his HEPA Filter Mask. He needs someone with him at all times. It’s a very limited life, but the hope is that this will save his life.

A few words about the Stanford medical staff. When in the hospital, Barry was seen by the BMT (Blood and Marrow Transplant) team. We got Wes Brown involved after a few days. For some reason she hadn’t been notified that Barry had been admitted and she didn’t get my original voicemail message soon after he was admitted. She is our go to doc when Barry is sick. She knows him very well and has saved his life more than once.

When I called her again after four days she came right over and was completely present for us. She told us that she was looking at patterns of Barry’s fevers (constantly from home) to try and figure things out. Last Sunday (!) morning I called her at 8am (I have her cell and home #s) because Barry’d had a really bad night. She got to the hospital at 9 (despite Stanford graduation traffic) and was very reassuring about his progress. When she left she said, “I’m so glad you called. Call me anytime.”

Sunday night the nurses from the ITA called Barry to see how he was doing and to say they were looking forward to us coming back. Since these people are our social life, it means a lot that they are so caring, not to mention extremely competent.

Today is Day 30. We are scheduled to be here for 100 days post-transplant. Hopefully the next 70 days will be uneventful.

Thanks for all of your phone calls, emails, Web site comments, cards, etc. Please don’t be surprised if I can’t respond.

Much love,

Bonnie

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.