Jay Lake (jaylake) wrote,
Jay Lake

[cancer] A few more comments on the fundraiser

Last night, the Acts of Whimsy cancer fundraiser crossed 200% of goal. Many deeply hilarious Acts of Whimsy have been unlocked, and I know there are more to come. Among other things, [info]the_child has recorded a "How to Write Like My Dad" video which is currently in post-production at Waterloo Productions, and will be offered as a stretch goal at a modest additional level of fundraising.

I want to emphasize again my profound thanks and appreciation to everyone who is participating. I am humbled beyond my capability to put into words, and grateful past measure. You guys are magnificent. Especially, my thanks to Mary Robinette Kowal and Catherine Shaffer for driving all this, and making so very much happen.

But I also wanted to say a couple of other things.

First, this fundraiser is at its heart for me to be able to pay for whole genome sequencing of my tumor tissue. That's what the initial 100% goal of $20,000 is for. The test alone costs $13,000, with OR costs, pathology costs, shipping and fees for interpretation adding as much as another $5,000. We rounded up to $20,000 because I also have to pay taxes on the money raised as income, since I am not personally a legally recognized charity or non-profit organization. (Insert obvious jokes here.)

The fundraising site explains this in detail, but the basic purpose of the testing is to determine if there are better treatment courses than the standard of care for my type of cancer. This is because a small percentage of cancers express themselves differently than their genetics would suggest. Diagnosis is done by presentation and tumor morphology, but the treatments are based on the presumed genetic signatures of the cancer. In other words, my cancer might be genetically kidney cancer (or whatever) despite presenting as colon cancer. If so, that would explain my poor responsiveness to chemotherapy over the past five years. We're almost at the end of the treatment flowcharts, and everything we've tried has failed. I'm not terminal yet, but the odds of me going terminal in the next couple of years are well above 90%. The testing gives us the possibility of another way out of this dead end, another treatment path that hopefully could lead to a cure, or at least significant life extension for me.

However, because this kind of testing is still experimental, not part of the routine standard of care, nor covered by insurance, it is expensive and non-trivial to procure. My tumor genome will also become part of the research process, as the companies, institutions and laboratories working on this project continue their efforts to prove the validity of whole genome testing for tumors. In other words, SCIENCE!!!

Your donated dollars are doing double duty to look for a way to save my life, as well as contributing to a long-term research effort that could eventually save millions of more lives.

What better way for a science fiction writer and the SF community to transmute the horrors of cancer into something approaching a public good? For this, I thank you.

Second, a few people have asked me how I plan to spend the money, since we are well over goal and continue to tick along nicely. The stated usage of the overage per the fund-raising site is for me to afford a leave of absence. I'm still considering exactly what to do about that. However, here is the current plan:

  • $20,000 for testing costs.

  • 20% of total fundraising (currently ca. $8,000) set aside for taxes.

  • 5% of total fundraising (currently ca. $2,000) to be given on as charitable donations, primarily to the two hospitals here in town that have been the most key to my family's health.

  • The balance of the funds to be set aside for a combination of future 2013 expenses (I spend about $10,000 per year out of pocket on costs of illness), retiring substantial existing medical debt, and supplementing my disability income for a leave of absence. The exact proportion of those three uses remains to be determined, as I won't even consider budgeting the overage until all the testing costs have been accounted for and settled.

As you can see, there is really no level of goal achievement on this fund raiser that can't be put to good and immediate use.

Again, my profound thanks to everyone involved. I really appreciate the continued support. As does [info]the_child, Lisa Costello and my entire circle of friends, family and loved ones.

Plus, well, SCIENCE!!!

Tags: cancer, child, health, personal, radiantlisa

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