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[cancer] Working through the universe of clinical trials

[info]mikigarrison, Dad and I spent much of Friday working through questions and decisions about clinical trials. Miki and Janet Freeman-Daily had been trolling online resources from NIH and elsewhere looking for possibilities, and diving through my medical history with Dad to try analyze how I matched the qualifications.

There are several issues right up front with qualification matches. One is that I have survived so long with this cancer that I have pushed through every available, approved treatment. This in and of itself disqualifies me from some trials, as they can have a matrix of “must not have been treated with X”, or “must have experienced outcome A when treated with Y”. While I am not flatly unresponsive to chemotherapy, my cancer has been pretty darned refractory. Another issue is my mutation status, as discussed here before. I have a rather rare KRAS mutation, which means that I am ineligible for studies seeking only KRAS wild type patients, but I am also ineligible for studies seeking only KRAS mutated patients, as my mutation doesn’t correspond to any of the handful of recognized types.

There are other qualification filters as well. For example, my ECOG score (roughly speaking, a measure of baseline health and fitness) is relatively high for my disease history and duration. Perhaps unusually so. This makes me more fit for some studies than the average patient.

It’s also the case that the intersection of my survival time, treatment history and mutation status put me in a very small pool of patients, for which many studies will not have an interest as people in that pool are rare enough as to not be worth targeting with research dollars.

Of course, we have our own selection criteria. Studies which have very low probability or unknown outcomes are less interesting to us than studies which are focusing on refining understanding of a known potential outcome. (I’m probably saying that wrong from a clinical perspective, but you get the point.)

Travel time, and time spent away from home, is also significant. I don’t mind running off to the NIH in Bethesda, MD if I need to, but I can’t spend months there as an in-patient study target. In principle, I could spend months here in Portland, or even Seattle, as an in-patient study target, because of proximity to my friends and family, and especially [info]the_child. Even there, the nature of the study inflects how we view travel. For example, a study which leaves me severely immunocompromised presents different challenges from a study which leaves me severely fatigued.

Location is relevant in other ways. NIH studies can be two or three years ahead of university and hospital studies in terms of the currency of the research being leveraged. NIH studies also usually include a travel stipend, which is otherwise quite rare. So I could go to NIH without having to spend a lot of money (or do a lot of fundraising), where a similar study at Johns Hopkins in Baltimore would have travel costs coming entirely out of my pocket (or those of my friends). I frankly don’t know yet how much, if any, of this my health insurance carrier will pick up, as there’s no point in asking them until we’ve got a better handle on what we’re asking for.

We’re also quite interested in treatment modality. Per [info]mikigarrison, there are four main cancer treatment modalities being explored in clinical trials these days:

  • Cancer vaccines
  • Monoclonal antibodies
  • Immune system re-engineering (using apheresis to harvest a specific type of immune cell (which varies on the study), genetically modifying the cells to turn the immune system on against certain tumor antigens, and re-infusing them into the body)
  • Anti-metabolite or otherwise cytotoxic drugs (newer drugs or drug combinations in line with what we think of as “traditional” chemo medications)

As it happens, I have extensive experience with anti-metabolites, to small effect except for my six successful months on Regorafenib, the drug which has now failed for me. I have modest experience with monoclonal antibodies, to no particular success. So in principle, we’re a lot more interested in trials of immune system re-engineering techniques or cancer vaccines, reasoning that if the other treatment modalities have failed me, it’s worth trying one with which I have no prior history in hopes that will be more effective.

As you can see, there are a number of overlapping selection criteria both from my perspective and the perspective of the study recruitment process. This means there is no clear-cut decisioning process or stack ranking for preference. Rather, everything falls into a matrix of factors, from which we have to make judgment calls.

At this point, looking within my somewhat narrow range of qualifications, we’ve found one Phase 3 clinical trial of a drug which has a strong response history for my kind of cancer. Issues there are the trial may be closing down, meaning I’ve missed the recruitment window, and that as a Phase 3 trial, it has a placebo arm into which I am at risk of being selected. Also, this is an anti-metabolite treatment modality. We’ve also found three different Phase 1 trials at NIH (Phase 1 trials do not have placebo arms), two of which are anti-metabolite trials, and one of which is an immune system re-engineering trial. Miki and Dad are working on a short list of other trials for us to pursue, most or all of them at institutions here in the western United States.

None of these trials are in Portland, but the next available trial in Portland which holds any promise for me doesn’t open before February at the earliest. That’s a long enough time frame for me to seek and enter another trial, and if I fail out of another trial, still be on deck for the that Portland trial.

Like almost everything else connected with my illness, this is a complicated and time-consuming process. I am profoundly grateful to my friends and family who are willing and eager to invest their time and energy in helping sort this out for me.

Also like almost everything else, the process is uncertain. I might be on the phone this week with an opportunity to go be screened somewhere for intake right away, or nothing might happen for weeks and weeks. So I can make no plans or commitments with any confidence at all.

We just keep trying, because that’s what we do around here. When I’m too exhausted or overwhelmed to keep with the trying, others carry my flag for me a while.

[personal] The weekend and me

Lisa Costello and I both continue a bit under the weather. She thinks we have the same bug, I am not so certain, though she’s probably right. I feel more or less okay in the morning, after a very slow start and a night of oversleeping. By afternoon I am fatigued, logey, mildly headachey, and feel as if I have a fever, though I am not hot. Lisa has much the same symptoms, except with rather stronger headaches.

If she wasn’t going through it with me, I would assume these symptoms signal the beginning of my terminal decline, as they’re pretty close to what I’ve been told to expect. Lisa’s had this for about ten days, I’ve had it for about three. So either a slow moving bug, or the hastening of my demise. Cheerful, eh?

We did have a very nice family-and-friends dinner yesterday afternoon. Lisa sat it out at home, due to how ill she was feeling, and I wound up leaving early for similar reasons. Team E— made smoked pork butt, Jersey Girl in Portland made two potato salads, mom made Moroccan sweet potato salad, while [info]tillyjane and AH combined forces for a green salad and some challah bread. Plus various desserts.

Also, [info]the_child came home last night from her East Coast adventures, but Lisa and I had zonked out by then, so I still haven’t hugged her hello and heard whatever stories she has to tell.

Laying low today, we’ll see what tomorrow brings.

[cancer] Today we plan, tomorrow may never come

Today, [info]mikigarrison is sitting down with me and Dad to prioritize the research she and Janet Freeman-Daily have done into clinical trials on my behalf.

I was thinking yesterday somewhere during our joyous and delicious family-and-friends Thanksgiving dinner how much the fact of my death distorts everything around me. It is a leaden weight on the fabric of my life, a singularity into which everything I am, I do, and I love, is slowly collapsing until my own personal event horizons swallows me up.

We are all born to die. I’ve just had the dubious privilege of examining my death in very slow motion, incrementally, for almost six years now. Everything that happens these days happens for the last time (probably). I go through the motions of my life because I do not know what else to do. And because I want to live tomorrow, I live today.

So today we plan.

[personal] Giving thanks

Today is Thanksgiving here in the United States. For the rest of you, I suppose it’s just Thursday. But whether it’s Thursday or Thanksgiving, this is as good a day as any for giving thanks.

I am thankful to my parents and my family for bringing me into this world and setting me on a path in life which has been more than satisfactory.

I am thankful for [info]the_child, who is the light of my life and the devilment of days, as it should be with children.

I am thankful for Lisa Costello for joining me in the last days of my life, and sharing love in a time which can be profoundly unloveable.

I am thankful for all the people who love me, and all the people I love. Friends, family, lovers, colleagues, the tribe here in Portland, Ken and John, my postal clerks, the guys at the Lamp and the whole team at Brooklyn Pharmacy — all you people who keep an eye out for me and check up on me and help me in ways ranging from tiny to life changing.

I am thankful for the publishing career I’ve had. I did not achieve even a fraction of my overweening ambitions, but I think if I had done so I’d be a smaller person than I am. One should always aspire to more. In any event, I have achieved so very much more than any rational hope would ever have dared, and for that I am very grateful to my mentors, my fellow writers, my agent and editors and publishers, my readers, critics and fans.

I am thankful for the life I still have, despite the terrible disease which haunts my body every day. I fully expect this to be the last Thanksgiving I ever celebrate, but it is also the sixth Thanksgiving since my cancer first came upon me. I am grateful to all the doctors, nurses, NPs, MAs, technicians, researchers, clinic staffers, and medically-inclined friends who have conspired to keep me alive even this long.

I am thankful to be here, and I am thankful you are here too.

Happy Thanksgiving.

[art|personal] Taking off the mask

A while back, the delightful Ellen Eades arranged for artist Beverly Toyu to create a life mask of me. This thing was done, and we arranged for some copies to be made. A while back, Lisa Costello went out to Beverly’s studio in the Oregon wine country to pick them up, as documented here: [ | LiveJournal ].

Finally, we were able to pull the masks out and look at them carefully.









These are pretty awesome. I love them. Hopefully their recipients will too. My special thanks to Ellen for both thinking of this in the first place, and then making it possible.

Art © 2013 Beverly Toyu.

Photos © 2013, Joseph E. Lake, Jr.

Creative Commons License

This work by Joseph E. Lake, Jr. is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 3.0 United States License.

[cancer] Funerals are real fun

The topic de la semaine hereabouts has been my funeral planning. Contemplating one’s own final arrangements is a subject sure to brighten any day.

Dad has been investigating funeral homes and memorial marker. [info]kenscholes in his capacity as a former pastor has been giving me advice and talking points about memorial services. Mother of the Child has been giving me her thoughts and feelings about the process.

I get hung up on a couple of points as I walk through all this. One, the whole discussion just makes me want to cry. Two, what is the proper balance between my desires and the needs and desires of those closest to me?

The first I just deal with. So much of my life is devastating these days, what’s one more incitement to grief?

The second I think I have a solution for, at least in my context. We’re probably going to have a small, private set of observances at my time of death and shortly thereafter, probably to be led by Mother of the Child’s Buddhist pastor.

Sometime a bit later on, a larger, public memorial service for my extended family, friends, fans and whoever wants to show up, will likely be led by Ken. That will be the last JayCon and/or the second JayWake, depending on how one wishes to look at it.

For the most part, my own desires are nebulous. In simplest terms, I won’t be here to care. But I am very mindful of how the rituals of my death affect the grieving processes of [info]the_child, her mother, Lisa Costello, and the rest of my family and friends. At the same time, it would be the height of hypocrisy for my cooling corpse (well, cooling ashes really) to be sanctified in a religious framework. Can I be a hypocrite when I’m dead?

There’s all kinds of details: Scattering the ashes? Memorial diamonds? What plaque and where? Much of this will be handled in a series of meetings next Monday.

I do know what I want for the epitaph on my marker. It comes down to a choice between two different things I wrote in Kalimpura.

“What are years to me? Like pain, they pass unnoticed.”

“In end, so is the beginning. In the beginning, so is the end.”

The first is more obscure but pointed. The second is more universal but borders on the cliched. Neither can sum up my life, any more than any epitaph ever can for anyone. The dying process itself sums up one’s life.

So it goes.

[cancer] The comfy chair: a memorial idea

My very long-time friend Chris Johnson has suggested that as a memorial, I should have a a comfy chair, ideally a leather wing-backed so one could take a nice nap in it. Designate it the “speak to Jay chair.” Perhaps a bit steampunked out with brass studs and so forth, with some embroidery and some such,

As Chris says:

A flexible section of ship’s speaking tube may be included, mounted where the occupant may easily reach and replace it. (Concealing the other end of the tube, complete with whistle, somewhere beneath seems best. If you know an audio person who can enclose the whistle in a structure that will give it a nice sound of distance, an otherworldly echo, or both, so much the better.) I can think of other elements that might be added, but a comfy chair requires a degree of comfortable, self-contained dignity that too many baubles might undermine (on the other hand, toys are fun), so it’s probably best not to go overboard.

In this way you may comfort us all, as you often have in life, albeit only one or two at a time (probably also like life).

He goes on to suggest that the comfy chair travel to conventions in my place, perhaps present awards and so forth.

Personally, I think this is hilarious. I am now trying to decide if I think this is practical. What do you think?

[cancer] Talking about life

Further on the question of the nature of my life and my process of death, Ron says:

I considered the posts that I read and saw nothing in them but anger and suffering. If Jay feels that there is more to his life now than suffering, he should post that more often than complaints about his GI tract, his inability to write or even function cognitively at a level that allows any degree of productivity.

(Actually, he said more than that, but the bit quoted above gets to his point.)

Simply put, I still have a pretty good life. I’m miserable a fair amount of the time, and scared almost all the time, but I still have [info]the_child and Lisa Costello and a host of friends and family around me. I still watch videos, read a little (though not nearly as much or as swiftly as I used to), go out to lunch, and even get on planes or in cars and go places. My life is full of love, entertainment and distraction.

But those stories aren’t so interesting. Some of them aren’t even mine to tell.

As I’ve said on multiple occasions, my own story, the tale of my illness, death and dying, is the last story I do have to tell. My happinesses are specific to my own life. My sufferings are emblematic of so many other lives. That’s not ego talking. That’s the experience of blogging my cancer journey these past five and half years, and receiving countless amounts of email and comments and in-person feedback.

When I see a movie, or eat a good meal, or have a nice evening with a friend, that’s not really news. That’s just me living my life.

But as I collide with the limits of my disease and my death, and the financial, legal and medical processes around it, that’s news. It’s information. When I write about it, I put a voice to something many other people experience in silence, and I bear witness to something many other people have not yet encountered.

At any rate, that’s how I see things. And so this is what I talk about on my blog. Just as in fiction, where we rarely tell stories of happy, well-adjusted people whose lives are going well — where is the dramatic conflict inherent in that? — in my blogging, I rarely tell stories of my happy, well-adjusted days. I’m too busy experiencing them.

Not to everyone’s taste, to be sure, including presumably Ron’s. But it’s the story I have to tell.

[cancer] Assisted suicide and the will to live

Yesterday someone asked me why, if I was so miserable, I didn’t go ahead with assisted suicide, as provided for by the Oregon Death With Dignity Act. Voluntary euthanasia has been legal here for many years, the primary criteria being that the patient is mentally competent to request it, the request be made both verbally and in writing, and that the patient be terminally ill with six months or less to live.

While I frankly didn’t appreciate the question very much, on reflection I realized it was a fair one.

The short answer is my will to live. As Lisa Costello has said, if will to live were sufficient for survival, I’d live forever. I can imagine letting go in the very late stages of my terminal decline, if I were overwhelmed by the physical and psychic pain of dying, but not short of that.

The slightly longer answer is that [info]the_child needs me. My lovers, friends and family need me. I need me. Like most people, I dwell in the center of an interwoven tapestry of love and obligation and joy and desire and support, and I don’t want to tear myself out of that place any sooner than I have to.

The more complex answer, as simple as it may be on the surface, is my atheism. Despite thousands of years of wishful thinking and uncountable faith narratives from virtually every human culture, there is not one shred of objective, repeatable evidence for the survival of self beyond the death of the brain. When I die, I will experience personal extinction. That’s not a belief, that’s not a theory; that’s a simple, empirical fact borne out by the experience of every human being who has ever lived and died before me. While I’d love to be an exception, given that basic truth of course I want to hang around the party as long as possible.

One final point: once I’m dead, I won’t know the difference. But many other people I care about will. So for them, I live as long as I can.

[conventions] Orycon, day two

Had quite a nice day here at Orycon yesterday. Good breakfast with my dear friend [info]bravado111. Did a panel on political systems in SF (and fantasy) which was ably moderated by Brenda Cooper. Enjoyed a lovely lunch with con com chair Lea Rush and Jacob E—. Spent my afternoon visiting in the lobby bar and crashing out in my room, with an eventual touch of the party circuit. About the speed I move at these days, so it all worked out well. Saw lots of old friends and new, and got some nice one-on-one time with a few folks.

Today, the Lakeside movie is showing, then I have a panel on reprints. Lisa Costello is coming to fetch me about 2:30 so we can load out, then we’re off to the Powell’s Authorfest at the Cedar Hills store.

See some, all or none of you around the joint today.

[cancer] Purposeful work

I was having coffee with a friend last week. (Well, I was having hot chocolate, since I don’t drink coffee, but he was having coffee.) As we chatted, my friend mentioned the need for purposeful work in one’s life.

That’s one of the biggest issues in my personal world right now. I no longer have purposeful work. My recent school visit was a glimpse of that, but no more. The Day Jobbe is behind me, and while that wasn’t exactly a big philosophical focus, it fed my family and kept me interested. My writing life is aso behind me, and that was a big philosophical focus.

These days I spend my time and mental energy, such as it is — an hour or two of cognitive focus per day, at most — on the minutiae of disability insurance and health insurance and financial planning and estate planning. That tends to be endless, soul sucking, and rewarding only the very abstract.

For example, the CT scan appointment I made yesterday after my oncology appointments was posted for October, 2014. I noticed this, called back in and asked for a reschedule. The rescheduled appointment was also for October, 2014. I called back yet again, and finally got the November date the doctor had requested. I had to pay close attention to days and dates, and do multiple followups over the space of half an hour. Me, with my foggy brain and dyscalculia and everything else.

Everything is like this. Swimming in mud, trying to keep up with forms and deadlines and Byzantine procedures. Not purposeful work. Not even remotely so.

So it goes, I guess. I’m still alive. My purposeful work today is to remain alive, to survive my cancer a little longer, and to bear witness to the world of this disease and its tribulations. But that’s hardly a job description, and the day-to-day reality of that is alternately finicky and exhausting.

I do less with less, and feel much less rewarded for it. Another thing cancer has stolen from me.