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Journal entry by Alan Kristal

Dear Friends.  I want to share with you that my husband Alan Kristal passed away on Friday night. He was a wonderful man, a brilliant scientist, a superb chef and the love of my life. May he rest in peace.  I love you Alan - Jason

If you would like to share a memory or thought about Alan, I invite you to send it to me at Jason.lamb@gatesfoundation.org  There will be a celebration to honor Alan's life in May (details to come). I would like to share these thoughts and memories at the celebration and cherish them for life.
Much love, Jason
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Journal entry by Alan Kristal

The first week in March went by without incident.  The weather was stunning day after day and friend Larry and i went up to Snoqualmie Pass to showshoe for a few hours.  I was thinking that maybe with the help of some new red blood cells I could ski again.  It was tricky, but I did convince my palliative care doc to break the rules and get me a unit of packed red cells (Friday morning).  My anemia was relieved, but something else was going wrong.  Two friends from San Francisco (our travel partners for 3 weeks in Ethiopia) had come up to say goodbye, but to visit with them I needed 8 mg of hydromorphone to cut through the pain (Friday night).  The next day, large doses of hydromorphone were worthless and I went by ambulance to the ER (Saturday afternoon).  The stent to keep my bile duct open, which was put in the week of my diagnosis, had became clogged and infected.  Monday morning I had endoscopic surgery to open the stent, and I was getting ready for discharge on Tuesday. 

Here's where things got interesting from a bioethics perspective.  Jason and i just happened to run into my oncologist while looking out of a waiting room window at the sunset.  He mentioned that my bilirubin had gone up, suggesting that the surgery had not worked.  But none of the other physicians working on my case told us.  I planned to get the test repeated Tuesday morning (you just have to ask the nurses---surprising what you can get by asking nicely).  And on that test the bilirubin was continuing to increase.  I asked to talk to the physician in charge of my case and discussed this with him. First I wanted to know why no one had told me, and then wanted to know whether there was anything to do about it.  He explained that in hospice (which I was entering) they treat only for symptoms, and that the biological indicator that the bile ducts were still blocked did not warrant treatment.  I was taken aback, and it took some time to understand this perspective.  I decided that since I was admitted because of the blocked duct, my goal had become to fix that precisely.  He did some recalculation internally, and said that what he could do is talk to the gastroenterologist and see if she could improve the outcome.  She asked for a CT scan, which showed the area above the stent clogged with debris, and then offered to go in again and clear it out.  Literally 30 minutes later, at about 6:00PM, she was at my hospital room pushing a bed to take me down to surgery herself.  (She knocked on my door, stuck her head in and said "Do we have a date."  Turned out that there were no "transporters" readily available, so she did it herself.)  That surgery was successful, and i was discharged on Wednesday feeling pretty good.

It has been very difficult since I got home.  Five days in the hospital left me weak and it was hard to recruit the muscles just get out of bed.  Any maybe drinking a few glasses of wine with dinner was stupid, because the next few hours were all about drug interactions.  In the midst of this small crisis, I circled back to the thought that in hospice you don't treat a biological measure---because here I was treated and absolutely miserable anyway.  How exactly was I benefiting? 

So now I am at the last question, which is when to exit.  Is that something you put into your outlook calendar?  And how exactly do you label it?  Is it an all day event?  Can you set an outlook end date to eternity?  What I did was look at my scheduled events, like visits and theatre, and picked the week when it all calms down.  That turned out to be the first week in April, and that's the plan.  Perhaps optimistic, but you need to start somewhere.    

One lovely thing that happened at the hospital was a visit from my old boss/mentor/friend John, who lives in New Zealand but was in Seattle for a few days.  It was the most difficult goodbye to date, because the situation was so dire and there was nothing to cut the sadness.  It was just the two of us recognizing each other in a dark pall of grief. 

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Journal entry by Alan Kristal

Let's start with this week, and work backwards.  Our trip to London was pretty mixed.  I love London, and there is so much to see and do that I usually feel like a kid in a toy store.  But this time, I ate breakfast and was back in bed---usually rousing for an evening activity but sometimes that was the day.  I somehow wrangled us a 1,200 sq ft suite with a view over Hyde Park, which was a fabulous place to feel lousy.  And I saw a friend from Seattle, now a successful photographer in London, who I'd not spoken with in 14 years.  There is something magical about friendships that rekindle instantaneously, so seeing him was the highlight of the visit.  We heard Akhnaten and the English National Opera, where we spent intermissions in the "Royal Retiring Room" and met the cast; the lead is a countertenor who could not be nicer or gayer.  We also heard a musically stunning performance of Katya Kabanova at the Royal Opera.  But we left a few days early.

I was scheduled for another round of a new chemo regimen, gemcitibine plus abraxane, on Monday.  But Sunday came to the realization that I was going to stop chemo.  It was an emotionally and rationally challenging decision; difficult to understand and easy to second guess.  But my life is already diminished, by an inability to do the things i love and by a creeping sadness that is mostly about leaving the people I love.  There seemed little use to extend this unsatisfactory situation, especially when chemotherapy is guaranteed to make me feel worse. 

The next steps are uncertain.  The tumor will grow and I will be challenged by pain and illness, but their speed and manifestation are hard to predict.  I don't know how to approach the ultimate decision on when to end my life, but perhaps it will occur in the same fashion as the decision to stop treatment.  Not a rational decision driven by a set of criteria, but as a realization that it is simply the right time.  Soon I'll make the shift to hospice care, though I will continue palliative care (you can "discharge" yourself from hospice, receive regular medical care and then "readmit" yourself) if the medical interventions will improve my quality of life.      

Speaking of quality of life, mine is still pretty decent.  I can easily walk to and from downtown and beyond to see theatre or get medical care (6 miles or so round trip), Jason helps me do chores (shopping, cooking, repairing, installing) so I'm still taking care of the house, there are meals with friends, and there are scheduled visits from out-of-town friends for meaningful goodbyes.  I did try to ski and it was a total failure: after one run I turned ashen grey and could barely get back to the car.  I'm too anemic for that level of exertion.  I'm busy giving away treasures.  So far, very luck people have received: my custom backpack and complete set of Becky Cascade guides; the Oxford Dictionary of Western Music along with other music books and sheet music; my bicycle; my extensive collection of physical therapy tools and props; my fabulous tuxedo, Armani sportcoat and stunning shirts; and anyone who requests it will get a copy of my well-documented and tediously-edited music library (in flac) specialized in opera, chamber music and piano (requests to akristal@comcast.net; it comes on a small flash drive). 

The thing left for me to acknowledge is the sheer force of the concern and love I have received from friends.  It is overwhelming and brings tears to my eyes.   

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Journal entry by Alan Kristal

It's been over a month since the last journal entry, because I've been waiting for things to calm down and take on some sort of clarity.  Chemo continues to be a challenge.  Round 3 went very poorly, with acute GI toxicity that forced me to skip a cycle.  I did get to Palm Springs and Joshua Tree, hiking or bicycling every day and enjoying the sun.  Round 4 was better: 2 drugs, both half dose, and no acute symptoms.  But it is a struggle to tolerate.  The first 3 days are like being drawn and quartered, pulled in every possible direction by the myriad of drugs.  The steroids make you manic, the chemo shuts down your GI tract and suppresses red blood cell production, the anxiolytics are a bit calming and the narcotics are stupefying.  Days 4-6 are a haze, as the steroids stop and the chemo drugs really grab hold.  Then you get a few days to gradually return to normal and it starts all over again.  There are two cycles left, and then we use imaging to evaluate.  Since my cancer antigen 19-9 shot up to 7600, it likely that the tumor is growing despite the chemo.  So I don't expect to continue.

Every day, regardless of its overall tenor, contains something unexpectedly delightful.  Often it's a note from a friend or past student, or a walk to see a new building in Seattle that (seemingly) materialized overnight, or a restaurant meal that is so corny that it makes you laugh or piece of theatre that is somehow much better than expected.  And putting mind over matter, I'm back to exercising and playing piano every day.  I do miss the adventure travel (last year Christmas was on a wilderness mountain plateau in Ethiopia), but there are trips planned: to Hood River to visit Ruth and Bill and ski on Mt Hood; to Fort Lauderdale to visit Jack and get out of the damn winter gloom; to London to hear Akhnaten at the English National Opera and Katya Kabanova at Covent Garden; and to Whistler.  There are rare moments of feeling sorry for myself, which are fleeting. 

Happy New Year

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Journal entry by Alan Kristal

I had a long break from chemotherapy, and it's amazing how fine I feel considering the circumstances.  During the break I moved to Virginia Mason Hospital, whose practice profile is diametrically opposite that of the Seattle Cancer Care Alliance.  It is patient centered:  the place isn't in a new building with the newest, shiniest machines, but it is organized to optimize the patients' experience.  Little things, like they validate parking, have quiet infusion rooms, and there is no sense of rush.  Big things too, like an oncologist who knows the goal is palliative and the chemo regimen is to minimize side effects and lengthen life of quality.  

Medically, a few good things.  After the first two treatments, there were measurable reductions in the number and sizes of the metastatic lesions in my liver.  This is an unusual response, not expected after so little treatment.  I just completed the new modified chemo (folforinox without the 5-FU), which I am tolerating quite well.  The only thing going wrong is that I am anemic from a chemo side effect that causes bone marrow suppression.  My hematocrit is below normal, but not low enough for a RBC infusion.  Since one goal is to be skiing in February, I'm going to need that infusion.  Time to start strategizing now. 

Jason, Chris and Marlys and I went to Paris for a week, and had a fine time.  Opera, art, food, friends and an impossibly beautiful and well-run city.  I'm heading to Palm Springs for a week in December to visit Chris Quilter (friend from the 80's in NYC), and to London in February.  I figure that as long as I make plans into the near future, I won't die in the interim.

But I'm getting fat.  It's just not going to happen.  I'm going to fight!

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Journal entry by Alan Kristal

The reason for the acute toxicity from the first round of chemo became clear last week.  I have three polymorphisms in the thimidylate synthase (TYMS) gene (the target of 5-FU, one of the chemotherapeutic agents), all of which predict lower TYMS activity.  So the 100% 5-FU was an overdose, and it caused the acute inflammation of my gastrointestinal tract. 

On Wednesday, I started round 2 at 50%.  Thursday was reflux and hiccups, which were controlled easily enough.  Friday night and Saturday were exhaustion, cognitive dysfunction and epigastric pain.  But nothing severe.  I spent the time floating on narcotics.  Today, Sunday, things are returning to normal.  On some bizarre scale of acceptability, I guess this is tolerable.

Last week, I felt pretty damn good.  I was on my exercise bike, back to rehab of my shoulder and, in what is probably a fantasy, doing a leg workout to prepare for ski season.  I was cooking most nights, and Jason and I were busy socially, saw some great theatre and watched movies in the Queer Film Festival.  This week are opera, theatre, and making plans to visit our friends Elise and Jake in Paris. 

The good news is that my ability to plan has extended from a few hours to a few days.  Pushing it to a few weeks seems foolhardy, but why not?

Journal entry by Alan Kristal

I've been home for 2 weeks, feeling a bit better each day.  I am back to many of my usual activities: taking long walks, cooking, seeing friends, and finishing my last research manuscript (sic).  Pain is absent during the day and manageable at night. 

Dose-reduced treatment starts again this Wednesday.  The clinical trials show that it substantially improves quality of life, so it's worth another try.  Though this time I'll be far more proactive on addressing side effects. 

The next update will report how I respond to treatment.  Thanks everyone for your thoughtful and kind notes. 

Journal entry by Alan Kristal

After a pretty rough and tumble ride, I get to go home today.  It's an interesting story of how new technology is changing medical practice, especially because I am the beneficiary.  The initial cause of my being hospitalized is that one the of the chemo drugs damaged by colon, and once that damage was done it set me up for complications.  Initially, I was infected with a strain of E. coli that causes GI distress but is otherwise self limiting.  That was easy to find, because there are simple, well-established tests, and simple to treat.  The problem is that there are thousands of potential infectious agents, and you cannot look for what you cannot find.  The infectious disease group here has a new toy that allows them to screen a single sample for entire libraries of pathogenic agents, based on a short segment of their genetic sequence.  When the infectious disease team ran my sample on their new toy, they found a unusual and unsuspected organism.  Treatment was simple and within 12 hours my symptoms had resolved.  There was a funny moment when the infectious disease intern and her supervisor (someone who I knew from the Hutch) burst into my room, practically jumping up and down with the success of their work.  

Now we wait for my colon to heal and for the results of some genetic tests that could explain the initial toxic reaction to the chemo drugs.  I'm looking forward to drinking some good wine in the meantime.

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Journal entry by Alan Kristal

I was readmitted on Sunday night.  The pain was too intense to manage at home.  Imaging found a few cm of inflamed tissue in descending colon, which is likely due to one of the chemo agents and the root of the problem.  The solution so far is not obvious.  Started a clear liquid diet (anyone remember jell-o?) to try to give everything a rest, and am taking three drugs to control diarrhea.  So far, nothing has changed. 

I've a large, private room at the University of Washington Hospital, with a nice window of walls, a comfortable sofa and a good reading chair.  There are rules about quiet (headphones only for TV, phones are set to buzz and a very low audible chime), flowers (not allowed) and visitor behavior (no children, no loud voices, no music).  And there are no barking dogs or screaming children to ruin a perfectly civilized afternoon.  The nurses are phenomenal, both in skill and kindness.  When I'm not in an extreme of stabbing pain or narcotic delusion, I enjoy talking to the staff.  Since it's a teaching hospital, just about everyone is in training at some level.  People are eager to engage, be it to help with a sore bum or explain how to interpret serum-based tumor markers.  Were I not the sick person in the room, this would a fine place to spend a few afternoons.

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Journal entry by Alan Kristal

I signed out of the last update reporting that I felt fine 3 days after the first round of chemo.  Then it hit.  I had a toxic reaction to one of the drugs (probably 5-FU). Forgive my not responding to your calls and notes---I was simply too sick  And it will be a few weeks of genetic testing before what is happening will (hopefully) become clear.  Chemo will wait, because I cannot go through this again.  I'm still very sick and it is unclear when symptoms will start to resolve.

So, please hold on to those invitations for lunch, walks and the theatre.  And my apologies to the many of you I had to cancel or put off.

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Journal entry by Alan Kristal

First the science.  Pancreas cancer was diagnosed a few weeks ago.  The mass is only about 2.5 cm, but it blocked the common bile duct and thus lead to a diagnosis.  Based on imaging, there are multiple very small lesions in the liver, which are most probably metastases. But because these lesions are too small to biopsy, their histology remains uncertain.  The plan is to start a combination chemotherapy called folfirinox, 4 cycles over 2 months.  At 2 months, the imaging is repeated, and we try to make a more certain determination on whether the lesions in the liver are metastatic or just some scar tissue.  If they are scar tissue, then I move to surgery.  If metastatic, then I move to a reduced dose chemo.

Second my status.  I'm feeling pretty decent.  A day after chemo I have some easily-controlled hiccups and bizarre cold sensitivity, but pain in my abdomen is much reduced.  How many people get to say that chemo makes them feel better?  So if you want to go to the theatre or movies, see a dance performance, or go for a walk, don't hesitate to ask.  

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Alan’s Story

Site created on September 8, 2018

You all  know how much I HATE social media.  But your heartfelt and kind messages have changed my mind, a bit.  It still seems problematically narcissistic, but this is an easy way to keep people apprised of what I expect to be a difficult bit of business.   PLEASE DO NOT POST ANYTHING HERE.  I'd prefer this to be a one-way messaging device.  PLEASE FEEL FREE TO RES0ND TO ME DIRECTLY.  After all, anything you have to say is between us,  And, as the Caring Bridge website says "Thanks for visiting."

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