New Chemo is Working and apply for clinical trial

I sent this email to all my support list after my chemo session on June 29, 2016

Hi, some good news to report. Today’s PSA is 47 down from 84 (I should post a daily update on that number. It would become a big secret betting combine). That decline is 3 weeks after my first chemo.  Good. I had chemo 2 today. Also today I began the process to enter a clinical trial for a drug being tested for prostate cancer. The drug is ipilimumab or “ippy”.  The common name is Yervoy manufactured by Bristol Myers Squibb.  I thank our good friends Angeles and Dennis Vitrella for listening attentively to an NPR broadcast and then following up with MD Anderson who ran the trials on the drug where it was shown as effective with some types of melanoma. I will find out in about a week if I can get into the trial.  I hope so. A little miracle cure would just make my 2016. Link to the original broadcast: http://www.npr.org/sections/health-shots/2016/06/09/480435066/a-scientists-dream-fulfilled-harnessing-the-immune-system-to-fight-cancer

As always, thank you for your support.
Hug the ones you love, (and periodically throw in a stranger or someone you don’t love so much)
Dan

Answers to a Nephew -- 4

--> This is the fourth section of my answers to my nephew.  If you have not read the previous sections, I advise you to read them now. 

“How have you changed your life knowing you have an expiration date?"


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The question about changing my life is really interesting. Since I don’t have a bucket list, I am not dropping everything to pursue one (as for instance in the movie The Bucket List). And I already mentioned that I/we have to deal with end of life issues. But what happens is another question presents itself: What should I be doing? How do I or what do I do to suck the marrow out of the remaining days? I really don’t know. That is troubling to me and I will work on this issue more as time goes on (though I hope for not too long as I would like to get on with whatever it is). But to help me I got to thinking of my two summers in Glacier Park in Montana. To me those two summers are absolutely golden. They are magic. They are highpoints of my life. I hiked all through the mountains, trying as many new trails as I could. During those experiences though I had a feeling of liberation and freedom—the mountains all around (I remember the thrill of seeing the first snows up high in late August when I was on my way to breakfast in the Boy Room), the sense of being in a very desirable place, and the sense of participating (we did a lot together—hiking, drinking, singing.) But then I begin to think of the realities there. I knew my magical time there would end. I lived in a dorm room with 6 other guys. The bathroom was down the hall. I worked in a gas station with a gravel surface that was dusty all the time. I pumped gas and washed bug-infested car windows and changed oil. In one way it was a pretty grungy existence..

So how can that magic appear in what I have now? What can I say? I lived the life that was there in front of me. What can I do now? Participate. Share. Love what I see. I have to admit I understand already in just a few days since The News that I really understand what it means to live for today and find joy in the now. The clouds have never looked so spectacular as they do these days. I think the answer is there. Should is not out there somewhere. A destination somewhere else. Should is here, now, and I have to participate in that reality as best I can, in spite of the dusty workplace and large shared dorm room.

I hope to write more on these topics and in the meantime I hope you will comment on my answers and share them with whomever. Eventually I will probably place this document on my blog. Thank you for the questions. I love doing this stuff—you have to confront the bad, stare it down--and I admire your willingness to wade in and ask.

Hi to all the kids. See you soon.

Love,

Uncle Dan

 

Answers to a Nephew--1

Here is one of the questions my nephew asked me.  Actually this is the last question in his list but I answered it first in the long email I wrote him. That explains my first sentence.

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" Do you feel rushed to complete a bucket list?”

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Let me start with your last question—a bucket list. No, I don’t have one. Years ago an older guy in the neighborhood told us how he and his wife would start travelling just as soon as they retired in two years. Then she died. He never travelled. We decided then that we would do our travelling and our spending throughout our lives and not wait. So now I don’t have a bucket list. I can think of places to go and things to do, but none of them are ‘essential.’ I won’t be lying on my death bed thinking “oh shit, why didn’t I ever…” Where could we go? Rome, northern Italy, Germany, Denmark, Norway, Lowell where the Riordans first lived in the US, Northern New York where the Palmers lived for about 150 years before they moved to Minnesota, New York City, Washington DC, the Georgia Coast, some of the great hikes in the American and Canadian Rockies. But if I don’t get to any of those, I have no regrets. I have been to most of them. What would I like to do? The only thing I can think of is paragliding in the Alps. When we were there a couple years ago we saw people doing that—the expert on top and the client underneath sailing around in the air currents. Maybe that will happen. I doubt it and if it doesn’t, I’ll be just fine. I think that the thing to do is create a bucket list when you are young and work on it. For instance we wanted to go to all 50 states. It took us about 40 years but we finally got all of them. I think the two real bucket list things I did was go to Europe (first time was when I visited your dad in Russia) and then to go to the Botticelli Room in Florence. I had a real sense of accomplishing something I always wanted to do with those two trips.

Answers to a Nephew--2

Here is part two of my answers to my nephew.  If you have not read the introduction and the first part, I advise you to go read those first.

“In your email you mention to think in terms of a year. Was that a major blow to hear that? My dad told me that the cancer you have is not curable basically, but a year seems like a tough pill to swallow."

Was it a major blow to get the news? Well, yes and no. I have known for years that my cancer is incurable and that one day a doctor would tell me what I heard the other day. I have heard other guestimates before (3-5 years, I year) but with each of these estimates there were always more treatments available. The deal with this one is that it is the last treatment in the sequence of treatments. I think I have had 9 or 10. I never counted, but this is it. The only hope I have is that my body just defies the disease longer or that they perfect a gene therapy that would work. I know that they are working on the latter but I suspect it will not be ready in time. We’ll see. And yes. It was a real punch to the stomach. But what can I say? I had been preparing for this and was delighted to find that I didn’t crumble when I got the news. That has been one of the gifts of cancer. I have never been sure how I would handle this news. And now I know and I have done OK.

In a curious way the date is good to know. Knowing it focuses me on things I have to get done in what is called End of Life planning. Get the will up to date, get all the beneficiary stuff correct, get the house in shape to sell after I die (just talked to a carpenter about replacing some rot in the foundation, another couple of grand). And I have to winnow my photo collection down and all my other papers and computer files so that the good stuff can stay and make sense to people and the nonessential stuff gets tossed.

Answers to a Nephew--3

This is the third section of my answers to questions my nephew asked me about my one-year timeline.  If you have not read the introduction and first two parts of this long entry, I advise you to go back and do so.

“Is it ever difficult to keep such a positive attitude and how has that changed? Was it tougher years ago to hear bad news or tougher now? Do you ever just get super fucking pissed off? Does Aunt Mary have the same positive attitude? The kids?"

The positive attitude is easier to maintain since I found out that I don’t have fear. I could never say that this is easy, though. The awareness of a date hovers in the background, like vultures riding wind currents in my head. The issue isn’t so much keeping the attitude as keeping the interest. Some days it is just real easy to think “Oh I’ll get to that tomorrow” or “I don’t really care.”  It is just a kind of depression that hits in. And sometimes I really don’t feel up to exercise, even walking up and down steps to do some little errand. I guess as I write this that it is hard to not let those depressive moments take over. But I haven’t had too much trouble rallying. I am trying to do this part of my life in a way that helps other people deal with this kind of experience. I am trying to do this with some finesse, to be a model. It is the major reason that I am so open about what is going on with me. Actually what is is really hard is the limit that is placed on planning. Everything revolves around the three-week cycle of chemo. I would like to climb once a week. Can’t do it. Maybe I can get one climb in the week before chemo. We think about going to NYC or to Europe—we can afford it and we have mileage besides. Still, saying “All right, we’ll have this week in NYC, those 2-3 weeks in Europe,” is really hard to do. I guess the answer is just do it and worry about the pieces if things fall apart (some of the best financial advice I ever to was “new data, new plan”—it works for just about everything not just retirement savings.)

It was tougher years ago to hear bad news. The washer breaks. The transmission needs to be replaced. No raise this year. They didn’t like my article or my presentation. There is an issue with kids. Now it is easier. Part of it is that I am older, part is that I have enough money, part is that this reality has been with me for 8 plus years. I think it is much easier to deal with this than what I have seen happen to younger people. For instance a young friend had a baby born weeks early. It lived two hours. That blow will take years to overcome. Grandma had to do that with Mary Claire. I and everyone who has supported me in all this is already prepared.

No I don’t get fucking pissed off. Here is the deal. All I have to do is die. Mary has to get me and her through that and then start a new life. She has periods of being pissed off but she doesn’t share a lot of that with me. It would be ok if she did. I sure don’t mind helping, and returning the support favors she bestows on me. I am not sure about the kids. They have not told me much about their feelings, except that it is emotional when I send out the news that my time is limited. Again it would be ok if I heard about it. What I want is candid clear questions and reports and what I want to be able to do is give candid clear answers.

Back on chemo/Introduction to Answers to a Nephew's Questions

Well, no chemo didn't last long. On June 8, 2016, I started a second round of chemo, this time for at least six sessions every three weeks. The drug I am being given is Jevtana aka Cabazitaxel.  Like the last one I feel good for several days, then tired and 'stomachy' for about 5 days, and then gradually ok.  I have my second session tomorrow and I will also find out my new PSA number.  By early June it had risen from 12 to 84 and the tumors were evident along my peritoneal wall.  The facts, however, came with a new unsettling prognosis. The oncologist gave me 8-12 months to live. Yikes.  I sent the information out in an email to children, siblings, inlaws and many supportive friends and relatives.  I had, as I have repeatedly had, numerous expressions of support. Those expressions feel very good. One of my nephews wrote me a series of questions, very candid, that I will answer over the next few posts.  I urge you to read them as they give a good sense of where I am physically, but more, emotionally.

After Chemo--What Next?

My 10th and last chemo was Thursday April 14.  As I write this it is four and a half weeks since then, the longest I have been without chemo since October.  How do I feel?  Tired.  I have been surprised that the tiredness has lingered longer than I expected. Usually during the course of chemo I felt charged up during the third week, able and willing to walk, work out, rock climb, meet people.  But now I am not so charged up.  I only began to work out on Monday the 9th, have not returned to rock climbing, tried biking only to decide I need to wait on that experience.  I also find—and this is troubling—that I am just as happy to not meet people. 

I find I have a drained feeling, not always, but often enough.  I will wait to do little errands if I decided I have done enough for today, even though the errand might only take 15 minutes. I don’t know what to make of this attitude.  I had it right after chemo but then the chemo itself was the obvious cause. Of course in the background sometimes is a little voice whispering “Well, we are shutting down around here. It won’t be long now.” I don’t like that. I don’t want to fall prey to that attitude. I can’t sit around waiting to die.

I can’t sit around period. I have to find ways to combat this sluggishness. Reading helps.  I have read all the Fredrik Backman books—I can highly recommend them. I also read The Three Musketeers, a novel I have never read (it has sort of a grisly ending), and am now working on 1493, which deals with the world changing events that followed Columbus’ landing in the new world in 1492. The course I am most committed to is conversational German where I have worked through over several years all 5 30-lesson units of the Pimsleur courses. I am slowly getting better because I have heard enough now that some of the words really do stick with me.

The question that arises, though, is what SHOULD I be doing? Chemo for prostate cancer is not curative, it is palliative.  Unless some kind of miracle occurs, I have maybe two years to live, if that. Mary and I have decided that we should travel. I wonder whether I should write more, about my life, my thoughts and values, my experiences as a teacher. Probably I should.  But getting to the point where I do that is a major commitment. Completed writing occurs because you start and stick to it regularly. An hour a day, five hours a day, whatever, just regularly. I should probably cull my large photo collection rather than leave that to someone else. On the other hand most of those tasks require me to sit at my computer a lot, and I am not sure I want to do that. I have many photos of my family on the wall behind my computer so I see them all the time and love looking at them, but what if we moved into the cities?  Could we travel more?  Travel requires strenuous effort, lots of walking. Right now I don’t feel like doing that and am not sure I could do that. Ugh.

I hope to return to this topic of what to do in upcoming posts. How active should I be? I have to say that sitting and watching the astounding bird activity in our yard is a very pleasant way to spend time.  Maybe more of that? Maybe stop worrying and do what is in front of me?  If I can’t or don’t feel like getting around, should I just listen to myself and focus on what is here and now?