Tuesday, July 20, 2010

I think the hardest part of every one of the procedures we've been through since Will was diagnosed has been the waiting - the weeks we spend knowing we're going in on such-and-such a date, and we try to go on with our lives while the thing is hanging over our heads. We both have physical side-effects from the stress: insomnia, nausea, headaches.

We seem to take turns being anxious. We don't do that consciously, but it works out well for us, because we can each lean on the other one when it's our turn to feel scared. I hate that Will has to go through this, but at the same time I can't imagine enduring this with someone else, because Will and I are going through it TOGETHER every step of the way. The cancer has brought us even closer than before.

But that makes it even more frightening, because every day that passes I'm less capable than the day before of imagining how I could ever withstand loosing him if we don't somehow beat the terrifying odds against his recovery.

Friday, July 16, 2010

It's official: we're going forward with the IL2 treatments, starting August 2nd. Will has been home throwing up for two days, he's so anxious about going back in for the treatments. They're much, much worse than chemo.

Thursday, July 15, 2010

Two years ago my husband was diagnosed with kidney cancer. The doctors removed his right kidney, along with a sizable tumor; they thought the cancer was contained, and we breathed a sigh of relief - in its early stages, surgically removed renal cancer has a survival rate of 90%.

Six months later, the doctors found some tiny nodules in his lungs on his follow-up CT scan. They were so tiny that they couldn't be biopsied, and it was possible they were post-surgical scar tissue... but it was also possible it was metastasized renal cancer, and if so it was in both lungs and therefore inoperable. 4th stage kidney cancer that cannot be removed surgically has a survival rate of 8%.


For another 6 months we lived with the fear and uncertainty, coming back in for CT scans that showed no changes, and having a negative PET scan (which seemed to suggest it wasn't cancer). But then it began to spread, and a biopsy last October revealed that it was indeed metastasized renal cancer.

Kidney cancer is highly resistant to chemo and radiation, so the standard cancer treatments are ineffective. But the doctors recommended another treatment we had never heard of before: High Dose Interleukin 2, administered in a hospital over a week, and then again a week later. It would have to be done in Boston, and we were scheduled to begin 6 weeks after the lung biopsy. By then, the cancer had spread outside the lungs; there were nodules in the abdominal cavity around the original surgical site, and in the lymph nodes going up his back. The doctor used the word "blossoming".

We were warned the treatments would be difficult, and we envisioned a week of food-poisoning-like symptoms. There was actually very little nausea; but his skin itched and peeled off, his blood pressure fell to occasionally dangerous levels, he had horrible chills, and wild, anxiety-ridden hallucinations. Too weak to get out of bed, he was utterly exhausted but couldn't sleep, and he couldn't concentrate enough to read or watch television. I stayed in the room with him the entire week, so at least he wouldn't go through it all alone. Once he woke me up at 4 in the morning in a panic, telling me we had to pack our things and get out of there, because we had somehow been taken out of the hospital and put into some kind of particularly malicious reality TV show!

Two weeks of that; it might as well have been water boarding.

But it worked; the tumors shrank and by the third month out had disappeared. We were supposed to undergo a second round of IL2 (two more weeks) in the third month, but my husband's remaining kidney had been damaged during the first round of IL2 and it wasn't functioning well enough. The doctors thought this would be temporary, and they turned out to be right. We are now ready to do the IL2 again. It's scheduled for August 2nd.

There's a catch, though. The cancer seems to have returned - two small nodules on his adrenal gland. This could be because he hasn't had enough IL2, or it could be that the cancer has become resistant to the treatment. If it's the former, the tumors will go away after the second IL2. But if it's the latter, the IL2 won't work and we'll have given the tumors 3 months to grow (and maybe spread). They are surgically removable - BUT if we taken them out now, we won't be able to do the second round of IL2 treatments, ever, because he won't be able to endure them with damaged adrenals. And the IL2 is his only real hope of a lasting recovery; there are a lot of other drugs for renal cancer, but all of them just slow the cancer down.

Although we have a tentative date for the IL2, we're waiting to hear the final word from the IL2 committee on whether we'll be doing the treatments or the surgery.