Hi everyone,
Sorry I haven't been around for awhile. I know lots of you are concerned about Heather and have asked Brian about her lately. I haven't been posting lately because I have nothing positive to say and I really didn't want to dampen anyone's spirits. You all have been so supportive though that you deserve an update, so here goes....
Heather has not been doing well these last few weeks. She had an MRI in August. It looked like the chemo (Irinotecan & Docetaxol) was keeping the spinal tumor stable, but it wasn't working for the head and neck, because the MRI was "lit up" in several spots, indicating that the cancer was spreading into the right side of her face and possibly the thyroid. So she started a new chemo regimen. I'm guessing here, but I think that without the Irinotecan to keep it in check, the spinal tumor must have started growing again or possibly the cancer has spread to her bones. Because since Tuesday, there has been a quite rapid decline in her condition.
Excuse me for digressing, but putting this in writing has made me realize what has happened here. We shouldn't have stopped the Irinotecan. We should have substituted something new for the Docetaxol or vice-versa. I don't know if it is too late to try this or not, but I think I need to make a call to the doctor. Heather actually just made the decision last night to forgo further treatment, because she is tired of the pain and the doctors hold out no hope for a recovery. I think we need to rethink this, though. If they could put her back on the Irinotecan in a 5 day infusion to get it into her quickly, maybe there is hope yet.
Of course, on the other hand, if I am wrong, that would just prolong her suffering. And if the spinal tumor has progressed to the point where the effects are irreversible, she probably won't want to try anyway because the paralyzation is advancing and I know she doesn't want to be a quadraplegic.
I guess this is why she should have been in a major cancer center all along. Supposedly those doctors would think of these things because they have seen so much of this type of cancer and the local docs haven't. Then again, her docs are following the regimen proposed by Johns Hopkins, but since she is not there and being seen on a daily basis by them, they don't know everything.
Okay, I think I need to quit writing. My mind is racing and I'm digressing. I should honor Heather's request to go into hospice, but if there is even a small chance, I think she will want to take it. Especially since she didn't come to the hospice decision easily. I think it was really only the thought of living totally paralyzed that brought her to that decision.
Well, I'm sure I have you all terribly confused now and I'm sorry, but I'm glad I decided to post because I think I see things more clearly now (thank you Dan Bogan for the email, or I wouldn't have started this posting yet). I doubt I will be back on the forum any time soon, because either way, the next couple weeks will probably be exhausting. But I will check in when I can.
And to those of you still in treatment, remember that Heather has base of tongue cancer, which is one of the worst. Those of you with tonsil cancer, for example, have a much better chance for a good outcome. She also was stage 4 when diagnosed, didn't have a full complement of testing done first, wasn't treated at a major cancer center, had lots of problems (feeding tube, fistulas, etc.) that impeded her progress. And there are stage 4 base of tongue survivors on this forum. Perhaps it would be good for some of them to chime in and offer a positive story to counteract this depressing one. Whatever you do, please don't equate Heather's case with your own. She is not the norm and I would think that most of you have a much better chance for a good outcome. Keep fighting!
Rainbows & hugs,
Rosie
