And how glad I am to be back.
The last 6 months have been damn intense.
Shortly after my last post, Habiba was diagnosed with esthesioneuroblastoma (an aggressive, rare kind of type sinus cancer). By the time it was caught it was already Stage 4 (there is no Stage 5) and had wended its way down into her right lymph nodes, up behind her eye and into her forehead, and back toward her brain (but not yet into it). It had broken bones in her face (hence the awful headaches she had been having), had impeded her sense of smell, and, right around the time of the last post, had started pushing her right eye out of its socket.
Because this kind of cancer is so rare, there isn’t a lot of data on how to best treat it. In the past, the standard way to treat head and neck tumors would have been to operate on them. A very invasive and scarring treatment. Fortunately, we have enlightened oncologists who were tuned into more recent studies on chemotherapies being tried. On January 18th, Habiba had a port installed into an artery (so that they could give her infusions without constantly having to find veins), and she began 4 rounds of a very difficult chemotherapy. She lost her hair, she slept a lot, couldn’t keep food down, was generally miserable when she was awake, and got dehydrated. The week right after the 3 day infusion was usually the worst. I worked from home a lot and we had a cadre of helpers, bringing us food and taking over for me so that she wasn’t alone. (The chemo made her weak and the port had given her a blood clot so she was prone to passing out. If she fell, it could have been very bad because of the blood thinners she had to take for the clot.)
She got immediately relief with the chemotherapy. Within days of her first infusion, her eye began to look normal again. So, we knew that the tumor was responding to the chemo. You can’t believe how grateful I felt. We were told that, although the chemotherapy might shrink the tumor, it wouldn’t be able to get rid of every cell. And because this is a very fast growing tumor–they estimate that it had been around for only 3 to 6 months–they would have to do radiation as well to give the best chance for killing off every cancerous cell and prevent this from happening again.
Unfortunately, we were told that the radiation would have to be given at such a high dose that she would likely lose sight in her right eye. (This was just awful, awful news because she is an architect and makes a living by the way she sees.) So, in April, we took a trip to M. D. Anderson hospital Houston to go see supposed “specialists” in this kind of cancer to ask about experimental radiation technology that might be able to spare her right eye. The hospital there was an institutional nightmare. We were told to stand in endless lines, forgotten about, given wrong information, given no information, and then when finally given access to the doctor who could give us information, were told that this kind of experimental therapy couldn’t be given to her. It was wasn’t far enough along to be wielded with the kind of sophistication needed for her case. So, we went back home to accept the risks of regular radiation.
But, when we got home, we got some good news! Because we had been delaying the start of radiation in order to go consult with the Houston specialists, she had to stay on chemotherapy until they could fit us into their bureaucracy. And the extra rounds of chemo had shrunk the tumor down so much that, by the time, we got to the specialists and they took their MRIs, no tumor could be found! That meant that, although she still had to go through radiation (to kill the microscopic cancerous cells that can’t be picked up with tests and scans), they could adjust the dosage so that she would only get cataracts and not lose her sight.
May and June was radiation on her face and neck every day. It wasn’t so bad at first, but then her mouth got covered in ulcers so bad that she couldn’t eat (not that she could taste anything–the radiation killed her taste buds). And her muscles got so stiff she couldn’t talk or swallow properly. It was like she was getting a really, really bad sun burn but on the inside. Lots of blisters and pain and swelling. When I lay next to her at night, I could feel the residual heat pouring off of her. At the very end, she had been rendered unable to speak or eat (and dropped to 95 pounds). The end of June, she rode out the residual effects (even after the doses stop, it gets worse before it gets better).
The last few weeks, life has started returning to normal. We’ve begun visiting with friends, going out to concerts, and going out to eat (her taste is coming back, slowly), and even, this past weekend, white water rafting! (She didn’t have to paddle and was carried on an oar boat like Cleopatra on her barge. 🙂 For me, I was so pooped out that, all I was able to do for the first couple of weekends was lie on the couch and watch episodes of “Weeds”. Now, we are looking forward to some travel and visits with family for the rest of the year.
On Monday, we’ll go to the doctor to found out the results of her latest CAT scan. She’ll be getting these every 1 to 3 months for the next 5 years. If the tumor comes back, at least they’ll catch it while it is small and easily operable. If she goes 5 years without a recurrence, then they’ll declare her cancer-free.
I can’t thank you all enough–Habiba and her family for their courage and you all for your prayers and kind thoughts. Habiba has said that I was the one that kept her going, day by day. And I would say that you all were the ones that kept me going, day by day. Knowing that you all were out there and rooting us on and eagerly wanting to know how things were going kept me focused and upbeat.
If you want to know more about this kind of cancer and what it can do, you might be interested in this video. Unfortunately, I couldn’t find this woman’s story in English. She had been diagnosed with the same disease as Habiba, 8 years before and, for some reason, refused treatment. In the end, she received a lot of press coverage because she was petitioning the French government for the right to die. She was in significant pain: The tumor had pushed one eye out of the socket, broken the bones in her face, and eaten into her jaw bones so thoroughly that they were nearly gone. She was refused and, just this last March, took her own life.