I really do apologize for the long hiatus! Between a short stint up to Maine to see family and dealing with a whole new level of exhaustion due to low hemoglobin levels (low oxygen levels), I have been terrible about keeping up! On the other hand, being back in the office (and now permanently in the Toxic Release Inventory Program at EPA), I am finding new energy where I didn’t think there was any left!
Thanks for the questions on the MRI. It’s actually a rather astounding thing. Turns out the two brain tumors which were radiated (full brain radiation as opposed to specific radiation to the two tumors themselves) are now half gone! The 3.5 cm tumor is down to 1.6 cm and the 1.5 cm tumor is down to 0.8 cm. Go figure! It didn’t even occur to me that these tumors (which were stopped by the radiation in March/April) could actually disappear. Wow! The oncologist’s words are that the recovery is “remarkable.” That’s the most positive we’ve heard her yet.
I hope you will let me be brutally honest here. That having been said, she is sticking with the life prognosis of 5-10 more years which is what she gave me in February. The lack of predictability in the case of cancer makes a reliable prognosis very tough. IF all signs of cancer go away (i.e., no evidence of tumors), she said she would consider a longer prognosis. I guess doctors have to be careful. In any case, the battle is far from over.
I don’t want to sound like I’m complaining, but do have to acknowledge that there are on-going issues that continue to suck up energy. The first is my hearing loss. It is hard to imagine how tough it is to function when you only have 20% hearing in one ear until you’ve lost it. NPR had a wonderful story this morning about a woman who’d lost her voice and hence her job and joy in getting together with others. Blessedly, the doctor was able to relieve her muscle tension and she regained her voice in 7 minutes. It was remarkable. I am in my 2nd month of hearing loss and am not expecting an equally spectacular recovery. That having been said, it does offer a good cover for ignoring complaining children.
My low hemoglobin (oxygen in my red blood cells) has dramatically lowered my energy levels. They have me on high levels of iron, but I guess the chemo must counteract it. In any case, it makes things I’ve taken for granted, like swimming, really tough. It’s also hard to stay awake, although I seem to be doing OK at work.
Finally, the cancer continues to make itself known in small ways to remind me that it’s still here. This weekend I had 10 minutes of excruciating pain in my spine. I’ve had similar short episodes in my lungs, brain, lower back, etc. The official assessment has been either “radiating pain” (pain coming from some place else) or nothing to worry about. Hard to live with either explanation but I am definitely grateful that it is brief and do acknowledge that cancer pain would be very hard to take if it were prolonged, like it is for end-stage patients. So hard.
At this point, it looks like I will see through the chemo until September and then possibly scale down to a Herceptin only chemo every three weeks. The Herceptin is primarily intended to keep the cancer under control and is not about eradication. However, that decision will be made in September.
That’s about where it’s at for now. I think the bottom line is that we’re on the right track. It just a question of being patient and seeing this though (reminder – patience is not my forte!).
I have just started Wilderness Warrior about Teddy Roosevelt. It is beautifully written and his fascination with wildlife is truly something. Roosevelt always carried around a copy of Darwin’s “Origin of Species”! His determination to protect Florida’s Brown Pelican is kind of amazing (or crazy) in light of other policy issues which were (no doubt) vying for his attention.
More soon but just wanted you to know I’m still here!