Friday, January 23, 2009

A new chapter

I’m not really sure how to begin this entry, because I myself am feeling very detached from what is going on. I have reached the point at which it is too heartbreaking to repeat my bad news over and over again to all the people that I love, as I struggle to deal with it myself.

When the unmistakable Australian accent of my doctor emerged last Tuesday night from behind the blocked number on my cell phone, the rest of the world fell silent.

Two surgeries, eight rounds of “conventional” chemotherapy, and two courses of high-dose chemotherapy with stem cell transplant have failed to eradicate the cancer from my body. There is a small new lesion that has formed within the old scar tissue between my liver and my right kidney, and a very low, but significant new elevation in bHCG, a tumor marker found in my blood. There have been three successive blood tests that have confirmed this. They have also confirmed something positive: that the tumor marker is for the moment stable, and so does not likely indicate a rapidly-growing, imminently dangerous tumor. Despite this, the best oncological minds at USC/Norris, Indiana, and Sloan Kettering agree that this is indeed an ominous development and must be dealt with promptly.

I am in a very scary spot. There are so few people who have gone through this that decisions on what to do next are no longer being based on data, but on anecdotal experience and (semi-) educated guesswork. When I first found a lump (when was that? Even I’ve lost count…: April 2006), the chance for complete cure was something like 98%. That percentage fell to something like 80% at the next phase, then to something like 50% (depending on who you asked) before I relapsed and had to move on to the high dose chemo with stem cell transplant regimen. The chance for a cure is now probably much lower than that, though it seems that the paucity of data makes any number practically meaningless.

There are many possible next steps, but none will ever be satisfactorily confidence-inspiring. We are at a point where circle on the Venn diagram that contains the “curative” approaches has a lot of overlap with the circle that contains “palliative” measures; that is to say, it is unclear what,  if anything, will rid me of this once and for all. There is little assurance that a plan designed to be curative would be any more effective than an approach intended to delay the inevitable. The clinical decision-making process in which my doctors and I have been engaged is too complex and convoluted to be fully described here, but that fact alone is really the point: there is no right answer.

That said, there is general agreement among my three teams of what their experience suggests provides the best hope for a cure: return my tumor markers back to normal by administering a new round of chemotherapy treatments containing compounds I have not been exposed to yet (taxol, gemcytabine, and maybe oxaliplatin), followed by a quite complicated surgery to remove both the new mass and as much of the accumulated gunk in my peritoneum as possible. Because of its truly unique distribution, this will likely require a team of surgeons from a number of different sub-specialties.

We are conducting a test at the moment that may or may not change my eventual treatment, but which hopefully at the very least will be amusing in the short run. It turns out that an elevation in LH, the hormone that in males drives the production of testosterone, can be misinterpreted by the machine as an elevation in the tumor marker bHCG. Not that there is any reason to suspect that I may have some separate endocrinological issue going on that would be making my LH go up, but in the name of dotting all the “i”s and crossing all the “t”s, I was given an injection of testosterone this afternoon. The idea is that while the tumor marker would be unaffected if it is indeed a tumor marker, if it decreases within a week of the injection, then in fact it was not a tumor marker at all but an elevation in LH, which would be suppressed by feedback inhibition exerted by testosterone. So far I haven’t felt any weirder than I already do considering the circumstances, but I am a bit worried to let myself out in public. At any moment I might go on a raping and pillaging binge, so watch out!

My life is completely up in the air. I don’t know where I will be getting treatment, nor how incapacitated it will make me, or for how long it will last. I don’t yet know what this means in terms of continuing with school. I don’t know if the stress school causes is a contributor to my illness, or if it is a motivating force that gives the direction and purpose I need to persevere. I don’t know if the independence I value so highly after two years without it is something to cling to, or whether it is more reasonable to retreat back into the protective comfort of home. I don’t even know what I am doing tomorrow morning. I don’t know. I just don’t know.

There was only one logical response to the shattering of my peace of mind: I threw a huge impromptu party last Wednesday night,  and then flew to Washington DC for four days of celebration with family, friends, and two million other jubilant people.

 

18 comments:

Unknown said...

Josh,
I am squeezing you as hard as I can right now and sending you all my love. You will persevere through this!! For now I'm keeping my fingers crossed that you're just a raging ball of testosterone and nothing more. Feel free to call any time day or night if you need to hear a distracting voice.
-M

Anonymous said...

josh,
i know it's enervating to have to write an entry like that, and i want to appreciate you for sharing with us and letting us know how you're doing. thinking of you.
love,
rachel

Angie said...

oh josh.... so sorry to hear from you this way again. my thoughts drift to Rilke's Letters to a Young Poet.

Letter Four
My dear Mr. Kappus: I have left a letter from you unanswered for a long time; not because I had forgotten it - on the contrary: it is the kind that one reads again when one finds it among other letters, and I recognize you in it as if you were very near. It is your letter of May second, and I am sure you remember it. As I read it now, in the great silence of these distances, I am touched by your beautiful anxiety about life, even more than I was in Paris, where everything echoes and fades away differently because of the excessive noise that makes Things tremble. Here, where I am surrounded by an enormous landscape, which the winds move across as they come from the seas, here I feel that there is no one anywhere who can answer for you those questions and feelings which, in their depths, have a life of their own; for even the most articulate people are unable to help, since what words point to is so very delicate, is almost unsayable. But even so, I think that you will not have to remain without a solution if you trust in Things that are like the ones my eyes are now resting upon. If you trust in Nature, in the small Things that hardly anyone sees and that can so suddenly become huge, immeasurable; if you have this love for what is humble and try very simply, as someone who serves, to win the confidence of what seems poor: then everything will become easier for you, more coherent and somehow more reconciling, not in your conscious mind perhaps, which stays behind, astonished, but in your innermost awareness, awakeness, and knowledge. You are so young, so much before all beginning, and I would like to beg you, dear Sir, as well as I can, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don't search for the answers, which could not be given to you now, because you would not be able to live them. And the point is, to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.

hope, love and laughter to you.

Angie Miller

Anonymous said...

I tried to call you but your phone was off. If you are back in LA let me know because Amy and I await your testosterone frenzy.
-Michelle

lefty librarian said...

I hope and wish and dream that all will be well. You are loved and appreciated and we all want for you to be healthy and good. Take care and much love,
heidi

OaklandLady said...

My thoughts are with you cuz. Let me know if you need anything. If you come up to norcal let me know!

Unknown said...

I found out about your new entry when Emilie alerted me while I am babysitting in Paris. I know you are a fighter so "Tchimbe raid pa moli" (the testosterone will help that) and you will see that through and be sliding on snow again soon;
Love
Jean-Paul

Andrew said...

Oh Josh,

Holding you in love, light and laughter.

Andy & Ruby

Anonymous said...

Josh. Good effing luck buddy. I dont know what else to say.

Ardeshir.

Anonymous said...

Live and know the depths of the love surrounding you, live beyond all levels of despair and the levels beyond those which we who have thus far escaped can only understand through knowing and loving those who suffer, live and fight with everything you've got and with everything that love and science can add to that,just keep going and live.

Anonymous said...

Grace just gave me the news and I read your posts. Know that you are in our thoughts and prayers. If you need a quiet place to get away you are always welcome in Arizona. We promise to try and keep the wildlife out of the front yard and our rambunctious little 3 year old quiet.
Love Wendy, Jerry and Tony

MommytoCoandAl said...

Josh, Josh, Josh......

TWO roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

The Road Not Taken; Robert Frost

YOU have taken the one less traveled by-- and that has made ALL the difference. YOU will continue to take the road less traveled by and this WILL continue to make all the difference.

Lots of Love,

Cousin Jen

Steven Schnitzler said...

My reactions tend more towards the physical than the cerebral. As I said before- Fuck this cancer shit, anyway. Beat it like you have before. If it happens again, beat it then too. How many times? every time...You will, I know this. And I am, you will be happy to hear, never wrong.
You called this post "a new chapter." I will view it merely as the next chapter. You have too many more to write. We are thinking about you.
Steve, Lisa, Justine, Olivia

Sophie said...

Your a tough fighter Josh. I know you will prevail with phenomenal results! Emilie broke the news to me this morning. I am sending you all my love on this glorious day, my Birthday :)

Anonymous said...

Josh,
We are dismayed to find that you're facing this all over again. Knowing your strength we know you'll continue to overcome. If this country can elect a man of color named Barack president, if the Arizona Cardinals can be in the Super Bowl, if a planeload of people can ditch into the Hudson and not lose a soul...well, you get the idea. We are thinking of you!
Adam, Carrie and Aaron

Anonymous said...

Josh,
We are both with you. You have a lot of hopes and thoughts with you as you face your treatment.
David and Mary Anne

Sara said...

Hey Josh-Just wanted to drop you a note-I linked off of Amber's page. Miracles happen all the time-thinking positive thoughts your way:)

lauren said...

with you josh