[Cancer]
[cancer] I have seen the future brother, and it is murder
I saw my medical oncologist yesterday. Dad and Lisa came with me, because of the increasingly complex situation.
The basic takeaway is that we are no longer treating me with the expectation of a cure, but rather we are treating me for life extension and quality of life.
Details:
The tumors in my lesser omentum and my thoracic diaphragm are most likely a spread from the liver, rather than a new set of systemic metastases. (This is good news.) Beyond that, things are pretty much as expected.
I will have a CT scan every two months to check for new metastases. It is reasonable to assume that they will appear fairly quickly, perhaps in a six-month time frame. In the mean time, as of early March I will resume Vectibix infusions every two weeks, but we are abandoning the FOLFOX infusions as ineffective. This means chemo will be two hours every other Friday afternoon, rather than all weekend with a Monday recovery day. I will also be a lot more energetic and less fatigued, and possibly my writing window will stay open these next months. The Vectibix will stay in play indefinitely, until my next metastasis, so I’ll be wrestling with extreme photosensitivity and terrible skin conditions for some time to come.
When the next metastases appear, we will have another round of surgery, then switch to Vectibix and Irinotecan. The mets after that will be addressed with further surgery and infusions of Regorafenib. After that, we are out of chemo options except for the possibility of enrolling in an experimental study somewhere.
The game is over either (a) when I metastasize in a location which is not surgically addressable, such as my liver stem or my lymphatic system, or (b) when we run out of chemo options to treat a new metastasis with. At that point, I will go terminal.
There is still some modest hope that the genomic sequencing will produce a new option which may lead to a cure. Likewise, we are seeking a second opinion at a major national cancer center (not yet confirmed), and there is some hope to be had from the possibility of successfully participating in a study. Frankly, the odds of any of these succeeding are small, but I am not giving up.
I continue to work with Dad on planning for disability leave and end-of-life issues, but that is planning ahead. I am not terminal now, and won’t become terminal until one of the conditions mentioned above is met. That could be in a few months or a few years. Once I become terminal, we are probably looking at six months to a year.
On Wednesday (tomorrow) I am seeing my surgical oncologist for a post-operative followup, but other than some administrative issues around the genomic sequencing results, I don’t expect any new information from that visit.
I have seen the future brother, and it is murder.
Meanwhile, life is for living.
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Posted: 6:00 am Tue February 05 2013 |
Comments
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So sorry, Jay. Write another book; I want to read it.
I second that vote!
;__; Well that is crappy news and not what anyone wants to hear, ever, AT ALL, but I guess it could always be worse.
Seamus’ aunt is in a similar situation, but they told her she was going to die almost twenty years ago and she’s still an active, mostly-healthy human who just gets icky bits cut out of her every couple months or years. I hope this works out as well (and as long!) for you as it has for her. She’s doing pretty goddamned good.
Live as hard as you can, my good man.
Smooches and squeezes. Lots of ‘em.
Hugs, Jay. Live the best you can.
@jay_lake cuck fancer.
I have a feeling that good things are around the corner, that life will improve soon. Keep your chin up and soon you will be in remission.
Sending good thoughts your way.
Thanks for the details. At least we know where things stand for you. I VERY MUCH like that they are still proactive about getting rid of all tumours they find in you from now on, when possible. I obviously don’t like the terminal part of the blog, but still, you have treatment goals still, and you have possibilities. And of course I will be expecting you to push all the boundaries of the limitations they gave you. <3
You are The Jay, no matter what.
Life is, indeed, for living…keep fighting, keep living!
I’m so sorry.
Hugs, Jay. Big hugs.
I’m so sorry.
{{hugs}}
Frak.
Thanks for keeping us apprised. Hugs.
Oh…crap. And damn.
I’ve been reading your posts with wonder at your being able to chronicle this. I’m so sorry for this development.
Live until it hurts and then live some more. Its your time,
You have already immortalised your words in print.
You are going to leave a legacy your daughter will be eternally proud of .
Fuck.
Live, love, eat well.
Damn.
For now, we have life.
Prayers and vibes for the right study and that the sequencing provides the esential information needed for successful treatment. Until then, damn it.
Jay, that’s awful. And yes, life is for living.
If you end up visiting the major cancer center near me in H-town, please let me know. I am happy to help however I can.
@Leslie – That is the likely destination, yes, but until Various Things are approved, still ambiguous. Will let you know.
That is a ton, man. Keep running and dodging.
Given the news your attitude seems up. That alone might fuel you until better news could be heard. Cancer has a way of messing with you, looking like there’s not much hope and then suddenly becoming somewhat inert — at least I’ve watched that with my own father. Pop’s now 7 months past his “expiration date” as he puts it. And his quality of life is very good (save his cache of daily meds). Looking forward to the next book, Jay.
You are always in my candlelight.
Hugs.
/hugs/
Jay, if it were me I would take some hope from the fact that your cancer keeps doing unexpected things; the genome sequencing may explain why that is, and may open avenues of therapy.
But I also know that the concept and definition of a cure is in itself specific to our culture; it is not universal. We are all mortal, and how we deal with that fact is shaped by society as much as by our individual psychology…
I think your odds of beating cancer are better than your odds of becoming an SF writer. Since you’ve beaten the odds before I’m wishing that you do so again.
Ah shit! So sorry to hear this, Jay.
With that news which isn’t great there could be hope. So just keep living and doing the things you can. We all never know when our time is up and you may just have years ahead of you as plunderpuss stated. You just never know. I’m sending all the positive energy I have your way since I don’t pray.
May you live longer, and better, than anyone (including you) expects.
*Hugs* Love you, man.
Your such a great writer. My heart is with you! I just found your website it’s amazing.
[...] road since then. Given what we learned this past January about me being considered incurable [ jlake.com | LiveJournal ], the road ahead is considerably shorter than the road behind. My CT scan and [...]