thanks for the continued warm wishes, folks. i'm feeling a bit better today, so i'm feeling hopeful about holding on for a bit longer yet. the last few days i've been dealing with 2 hours of rest each night as the tumor(s) combined with other crap in my body to make breathing while laying down nearly impossible except in certain positions.
last night was different, and i was able to rest a full 7 hours. i'm still dead tired as i type this, but mentally i feel a world better.
here's a picture of me in better times with the girlfriend. this was taken in Lima, Peru a few months before i was diagnosed. posting for no other reason than to make me cry like an ass when i visit this thread later.
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again, thanks guys.
thanks for the continued warm wishes, folks. i'm feeling a bit better today, so i'm feeling hopeful about holding on for a bit longer yet. the last few days i've been dealing with 2 hours of rest each night as the tumor(s) combined with other crap in my body to make breathing while laying down nearly impossible except in certain positions.
last night was different, and i was able to rest a full 7 hours. i'm still dead tired as i type this, but mentally i feel a world better.
here's a picture of me in better times with the girlfriend. this was taken in Lima, Peru a few months before i was diagnosed. posting for no other reason than to make me cry like an ass when i visit this thread later.
![]()
again, thanks guys.
Scorcho:
I like you.
I like you for two reasons
1 - I like your avatar
2 - You were nice to me in a thread once
You can do it! I believe in you!
Update:
I'm not sure if I should use this as a running medical log/livejournal diary. I'm a web developer. I really should just repurchase my old domain, throw up a quick CMS and go hog wild on it. Let me know if you'd rather not read any of this and I'll stop.
So I guess this is some slightly positive news. There is currently only one open trial at NIH for my type of cancer involving a drug called Sunitinib that's had some limited success in containing tumor growth in patients with either thymoma (less lethal) and thymic carcinoma (super lethal and, unfortunately, my type). I'm no longer in any physical condition to make the scheduled trips from NYC to MD to receive the treatment, so we hoped to get the drug instead through my insurance and treat it at my current hospital (Memorial Sloan Kettering). Total cost - $10k for a 30 day supply.
I wrote above that Pfizer donated the drug after reviewing my financial record for last year where I was on medical leave for six months recovering from my 2nd open chest surgery. I actually received a call later on reversing the decision after they reviewed another tax form.
A friend helped get one last appeal out quickly and finally one of them worked. I have the drug, and after consulting with my doctor at NIH and at Sloan we agreed to skip tomorrow's treatment, have a new scan on Tuesday and assess from there.
The responses to the trial at NIH have been positive so far - they've seen tumor shrinkage in all the first round scans 5 weeks in. Few side effects as well. There have been cases of this drug successfully holding the cancer in stasis for a little over a year for some patients.
I'm hoping for enough shrinkage to lay down comfortably again. Or, better yet, to relieve enough pressure off my heart and lung to allow me to get off this oxygen machine. Dare I dream...
--
and thanks again everyone for the kind words. even with my friends and family, these last few months have felt incredibly lonely. seeing your responses have done a lot for my mental health and overall mood.
Update:
I'm not sure if I should use this as a running medical log/livejournal diary. I'm a web developer. I really should just repurchase my old domain, throw up a quick CMS and go hog wild on it. Let me know if you'd rather not read any of this and I'll stop.