It is almost 18 months since Barry’s second transplant and he is cancer-free.  (He’d rather I write that “the doctors believe he is cancer-free”.)  The reason the docs know this is that he has chronic Graft vs. Host Disease (cGVHD).  There would be no GVHD without an H.  It manifests itself in his skin, red and sclerotic, and he has been treated for this with the dreaded Prednisone, a miracle drug, with very nasty emotional and physical side effects.  They are (finally, after much begging) tapering down on the Prednisone and Barry will start in a clinical trial with Nilotinib to treat the cGVHD. (Nilotinib is Gleevec 2.0 because Gleevec is out of patent — don’t we love the drug companies…)  The trial is here if you’re interested http://med.stanford.edu/profiles/frdActionServlet?choiceId=showClinicalTrial&&studyId=6317&fid=6165. David Miklos is the principal investigator.

Barry asked the other day why cGVHD is such a big deal if he doesn’t really mind the skin problems. It was explained to us that if GVHD is not treated early, when it advances and gets very ugly (I’ll spare you the details), it has to be treated with massive doses of immuno-suppressants and then Barry would be susceptible to opportunistic infections that could be fatal.  That did it for us.  We’re with the program.

David also gave Barry the ok to travel, and swim, with his usual “You have to live your life” line.  Despite having taken our amazing seven and a half week cross-country road trip this summer (http://www.youtube.com/watch?v=PhchSETJVyI), we’re raring to go and will be planning some trips for 2012 soon.

In other good news, the US Supreme Court, denied cert (they won’t hear) the appeal that the evil landlord filed.  Even these Supremes didn’t want to touch this guy.  Game over.  He has started to pay on the judgment and Barry is rightfully very proud of his team’s work on this case.  He took the case in February 2003, tried it in October-November 2008 and now he’s finally getting paid and the recognition he deserves.  The class members are very happy.  There were many times we thought Barry wouldn’t live to see this day.

And finally, Barry has two books in print, The Flight of the Sorceress, his historical novel (http://flightofthesorceress.blogspot.com/) and Burning Questions, the first part of his 1970s trilogy set in Gloucester, MA (http://1970strilogy.blogspot.com/). For those of you in the Bay Area, he will be reading from The Flight of the Sorceress next Sunday, November 13 at Bird & Beckett Bookstore (653 Chenery) at 3:00 pm.  If you need a break from Occupying, come on by.

Best wishes to all for a healthy and happy holiday season.

Much love,

Bonnie

Today is the one year anniversary of Barry’s second transplant.  Many people count that date as another birth date.  Barry’s health is good.  He has some minor GVHD (graft vs. host disease) but that is a good thing because he has a graft.  He never fully engrafted with the first transplant.  He is on steroids (not a lot of fun) but we are hoping that he will be able to get off of them in the future.

We met his amazing and generous (two-time) donor.  Here’s a photo of them together, taken a few weeks ago.

I retired in January and we are enjoying life together.  We get immense joy from our grandchildren.  At the same time we are in deep mourning for our dear young friend, Hope Reichbach.

Barry will have two books coming out in print in the next few months, ”Flight of the Sorceress” and ”The Fourth Conspirator”, and we are still waiting for the next appeal to be denied on his case against the evil landlord, Richard Thomas.

Since Barry is not allowed to fly because of the danger of infection, and we are anxious to get out of Dodge, we are planning a cross-country road trip this summer.  We hope to see many of you along the way.

With much love and gratitude,

Bonnie

This has been a great week.  Results from last week’s biopsy show no disease and that Barry is almost completely engrafted.  There is some evidence of graft vs. host disease beginning (taste buds not doing well, especially with sweets — oh no), so David put Barry back on an immuno-suppressive for a period of time.  The good news about graft vs. host is that there’s a graft!

We want to wish everyone a joyous Thanksgiving. We are grateful for all of your love and support.

Much love,

Bonnie

What a wild ride we’ve been on health-wise.  Last time I wrote, Barry’s engraftment was dropping.  Last week his white blood count and absolute neutrophil count (neutrophils fight infection) plummeted and he wasn’t feeling well.  After four shots of Neupogen, his counts recovered, and in the meantime, they did another chimerism (engraftment) test.  Every single line that they test (T-cells, B-cells, Blah Blah Blah) went up and three were in the 90s.  We’re thrilled and David Miklos is very encouraged.  He thinks this happened because Barry is off all immuno-suppression drugs (as well as most other drugs).

He has a biopsy on November 12 and we’ll talk about the results with David on November 19.  When we were in the Cancer Center on Saturday, the doctor on duty (Dr. Benjamin from Stamford, CT!!!) asked Barry how he was doing with this roller-coaster ride. Barry said he was getting bored.  I would dispute that.  I’m definitely not bored.  Anyway, he said that Barry is really a challenging case and that David is following every little thing and working really really hard on Barry’s “situation.”  We weren’t supposed to get the chimerism results until Monday, but Dr. Benjamin called late Saturday afternoon with the results and asked if Barry was still bored.  Best phone call ever.

We really have been trying to live our lives somewhat normally.  I’m finding that extremely difficult.  I’ve announced my retirement as of January 6 and am really looking forward to having time without the pressure of work.  I need it.  I’m completely depleted.

Barry’s been writing and publishing and is on a roll.  Check out his postings at www.agauchepress.com.

Much love to all,

Bonnie

PS — so we beat Texas twice, first the Rangers, and then Prop 23.  Go California!!

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

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

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

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

Yesterday Barry received the previously-frozen cells from his donor via infusion.  It all went very smoothly, although it was a very weird experience for both of us.  The cells had been frozen in five separate bags inside flat metal disks.  We had been under the impression that they had been in a freezer, but we were told that they had been packed in something much stronger, a liquid gas, to a temperature of -175 degrees.  The BMT Tech wheeled in a large cart with two coolers and a warm bath on top.  One bag had been defrosted and it had an expiration time of 4 hours post-defrost.  One by one, the other bags were put in the warm bath to defrost and then infused into Barry.  The four other bags had expiration times of 30 minutes.  It was like a production line, with the BMT Tech, the physician assistant and the nurse, all checking name, date of birth, medical record number, number on bag, donor number, etc., etc., many many times.  They did not make any mistakes and we felt very confident.  The whole transplant took about 35 minutes.

And the good news is that Barry tolerated it very well.  No untoward events have occurred so far.  He went into this transplant very strong and healthy, which is a good thing.  And this time he WON’T get shingles which made him so sick the last time and threatened his life as well.  He is on a prophylactic dose of Acyclovir, and although there are no promises, we feel like all precautions are being taken.

So now the 100 days has begun and our daily routine is set.  For now, we go every morning to the Cancer Center where he has blood draws (through his Central Venous Catheter), hydration (also through his catheter), meets with nurses to check medications and with physician assistants and doctors who examine him and answer any questions we have.  The nutritionist is also around to answer any questions about the low-microbial diet he is on.  After a little while, perhaps a week or two, we will start to get days off.

The rest of our days are spent dispensing medications (Bonnie), eating (both of us), sleeping (Barry), making sure he drinks 3 liters/day of liquids (Bonnie), preparing meals (Bonnie), doing laundry, keeping the apartment in order and sanitary (Bonnie), taking care of family business (Bonnie), perhaps checking into my work (Bonnie), etc., etc., etc.  I am trying to do the shopping and errands while he is at the Cancer Center as I am not allowed to leave him alone ever.  Next week I hope to start working with my trainer and doing some other things for myself while local friends come and Barry-sit.

Doing this the second time around is easier, although who needed it to be easier, or even to have it be.

We are very happy in our 820 sq. ft. apartment.  It’s got a lot of light and a lovely view of the hills to the West.  We are also happy that we moved down here a few days early and got settled in.  Many thanks to Julia for her awesome tech support.  I could have done it myself, but my brain was not (is not?) functioning.  We just wish it would stop raining.  Enough already with the rain!

Our address here in Palo Alto is:

1618 Sand Hill Rd., #411
Palo Alto, CA 94304

Phone:

Landline: 650.485.2225
Cell: 415.297.2802

Please do not send flowers or plants as they are not allowed.

Lastly, we are thrilled to announce the re-design and launch of Barry’s Web site, http://agauchepress.com/.  Many thanks to Will Nathanson for the re-design and to Roslyn Banish for the photo.  There are still a few things we need to edit and fix.  Please let us know if there are any problems.

With much love,

Bonnie