When I visited Rochester to help get the house ready to sell after Jay's father died, I found three letters in his files that I had written to him during Jay's illness.
I was happy to find them, because I had lost all the copies of letters and emails stored on the computer for the entire period of Jay's illness - and that was pretty much the whole record.
I've decided to type them into this journal. They'll be safe here for a while. "[---]" indicates today's edits.
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March 18, 1999
Dear Folks (Dad and Sisters),
I've been making Jay make the "I'm fine" calls because it's good for him, and you'd be more likely to believe it if you hear it from him rather than me. He's shy about talking on the telephone, so I rarely listen in, so I don't really know how much Jay has told you about what's going on with him. His way of handling problems is to not think about it - ignore it and maybe it will go away. (My way is to research it until I know everything, and then club it until it runs away.) So I suspect that you have got very little detail from him.
So, in case you're like me and want all the details, here it is. For every bit of bad news there's good news.
Last October, he had a seizure after stepping out of the shower. EMTs, ambulance, stretcher, another seizure in the emergency room, three days in the hospital. They could find no clear reason for the seizures, but they put him on Dilantin and told him he couldn't drive for six months. An MRI later in the week showed a tiny pinpoint of light on the right side (which could easily have been missed if it had fallen between the "imaging slices"), which was tentatively diagnosed as possibly a minor stroke.
At the end of January he had a followup MRI. The pinpoint was now about two inches across. We saw the neurologist in [town], Dr. G[---], the next day, a Friday, and on Monday we saw the chief of neurosurgery at Albany Medical Center, Dr. P[---]. Dr. P[---] wanted to operate immediately, but Jay had been taking baby aspirin for his heart, and we had to wait until the aspirin was out of his system, so the surgery was scheduled for Tuesday of the next week. I didn't think about it then, but now I am impressed with how quickly all these otherwise "impossible to see" people became available to us.
The initial diagnosis after the surgery was malignant mixed glioma, in the right parietal region. "Mixed" means that there were several kinds of cells involved. The Glia is the supporting tissue of the brain. Dr. P[---] removed the tumor plus a margin of clear tissue, down to "microscopically clean" edges. But you can't look at every single cell, so although he feels very positive, he can give no guarantees. The pathology report says high grade oligo-astrocytoma. Oligodendrocytes and astrocytes are the cells that make up the glia. High grade means it is aggressive (growing fast) and invasive (growing into and replacing normal brain tissue), and looks very different from normal cells. The tumor had vascular parts, solid parts, necrotic areas, and fluid areas, a very odd tumor altogether. (If we had sent Jay to the lab with orders to design a tumor, this is exactly what he'd come up with.)
That's all bad news. The good news is that we got one of the best brain surgeons in the state, and it was a miracle that the tiny pinpoint must have hit a critical area that threw off the seizures. Jay had no other symptoms, so without the seizures, we may not have caught it until too late. The doctors said it's obvious that the part of his brain invaded by the tumor was not functioning before the tumor, because it sure wasn't after. Dr. P[---] had warned me that he would have to remove possibly functioning tissue also, and he could not predict the results - the most likely being left-side paralysis. They are now amazed that he seems not to miss six or eight cubic inches of brain. After a five hour surgery, within a half hour out of the operating room he was helping the nurses set up his CPAP machine (for his sleep apnea).
The nurses, by the way, loved Jay. In a lot of ways he's never grown up. He still has a ten-year-old's curiosity and enthusiasms (not to mention sense of humor). And when anybody comes at him with a needle, he even looks ten years old. In a guy so big, it's endearing.
The oncologist, Dr. W[---], is not as positive as the surgeon, but I guess that's the nature of her job. She says the good news is that this type of tumor is local and does not metastasize. The bad news is that it always recurs. She recommends chemotherapy, specifically a phase 2 clinical trial of intensive high-dose chemotherapy with bone-marrow transplant. Standard chemotherapy can buy time, but will not eradicate the tumor remnants. Intensive chemo is considered the best treatment because the blood/brain barrier makes it difficult to get the standard chemo dosages into the brain, and with intensified more will get through. That's the theory, anyway.
I've been reading up on it. The protocol is currently the preferred treatment for brain cancer, and is in phase 2 clinical trial at Harvard/Mass. General, Sloan-Kettering, and several other cancer centers. (It's the same protocol that has recently been tried for breast cancer, now in the news because it doesn't seem to be clearly better than the standard treatments for breast cancer, and given that it's twice the cost and some people don't survive the treatment itself, a forthcoming report is going to "unrecommend" it.)
The prognosis for brain cancer is, in general, absolutely miserable (it's the most common childhood cancer, and the childhood and geriatric numbers depress the totals). No one will give a specific prognosis for an adult individual because the brain itself is so unique for each person, besides the usual differences in timing, location, condition, operability, makeup of the tumor, etc. According to my reading, the astrocytes tend to be the more aggressive, and are not very responsive to chemotherapy. A pure astrocytoma is very dangerous. The oligodendrocytes are usually susceptible to chemo. The doctors don't know why, but when you go after the oligos in a mixed tumor, it kills the astros, too. Jay and I theorize that maybe the bad oligos put out a chemical that encourages the astros to grow, and without the bad oligos, the bad astros die off. So Jay's lucky there, too. His tumor had a "significant oligo component". (By the way, if you happen to come across any brain tumor material, there's a tumor called a "grade IV glioblastoma multiforme" (GBM), whose description is very close to Jay's tumor. It will give you nightmares. I couldn't sleep for three nights after coming across it on the internet, but the difference is in the structure of the nuclei, and that definitely is not what he has.)
From what I've read, we've been through the easy part. The protocol he has signed up for is rough.
It's been six weeks since his surgery, and I'm starting to get anxious -- the tumor grew so fast between October and January. The first three weeks after surgery they said he had to be completely healed before chemo, since chemo kills dividing cells, and will halt all healing. Then, his jaw hurt. The temporal muscles had been cut in surgery, so some ache there was to be expected, but when it didn't stop, we discovered it was an abscessed tooth. It took another two weeks to accomplish a root canal. He couldn't start chemo with a pocket of infection. This past week we've been waiting for the results from some special blood tests (why couldn't they have been ordered earlier?) and meeting more doctors. I hope we really get moving next week.
First step will be collection of stem cells from Jay's bone marrow. They will teach me how to give him injections, and then I'll be giving him shots of some stuff for several days that will cause his marrow to release stem cells to the blood. Then they hook him up to a machine and circulate his blood through to collect the stem cells (apheresis), and store them for later.
He will then go through two cycles of intensive PVC chemotherapy (Procarbazine, CCNU (aka Lomustine), and Vincristine, some intravenously and some by tablet). A cycle is about 42 days - the first 29 days getting some form of chemo followed by 13 days recovery time. They gave us a list of side effects, then pointed out that since he'll be getting about 25% higher dose than normal (the "intensive" part, designed to get a larger proportion to the brain), "many of them are expected to occur". Jay seems to be most worried about loss of hair (the man is emotionally involved with his BEARD!) I'm most worried about his immune system being depressed. And if he's too tired to work, that will mentally depress him (he doesn't get paid if he doesn't work - not a problem, really, but the idea will depress him.)
After two cycles they'll look (MRI) to see if the chemo is working -- i.e. no tumor growth. If there is growth, they'll stop the chemo and go to some other therapy, probably radiation (which seems to scare Jay) or a biological therapy. If the brain seems to be responding to the chemo, then we'll continue with one or two more cycles. As we go along with the cycles, the chemo will be damaging his bone marrow, he'll become more and more susceptible to infection, and will need more and more protecting - much more than the average chemotherapy patient. I intend to be fierce. By the third cycle he will be my prisoner!
There are dietary restrictions associated with one of the meds - I don't have it at hand right now - but no bananas, aged cheeses, pickles, certain breads, certain meats, etc. In the later cycles, he won't be able to have fresh vegetables (and especially not raw, because of bacteria), anything with a possibility of fungus, and so on.
He will then (assuming he has passed all the tests so far) enter the hospital for a few weeks. He'll be in a private room in an isolation ward, with air exchangers to eliminate germs, and a lot of restrictions. I will be allowed to visit, but they'll practically sterilize me before I'm allowed in. No other visitors. They will give him a high dose of Thiopeta, a powerful chemotherapy drug, intravenously, for 72 hours. This will unfortunately totally wipe out his bone marrow, leaving him with no immune system. About four days after that, they will give him his stored stem cells back. The stem cells travel to the bone marrow, settle down, and start raising families again. They will keep him isolated until he starts producing leukocytes and stuff again, usually two or three weeks.
Then he comes home, and the waiting time starts.
The mortality rate nationally for infection after this procedure is 5%. Albany Med has done something like 300 marrow transplants of this type over the past 5 years (mostly for leukemia), and have lost between 2 and 3% to infection, but have lost none at all in the past two years. Jay's immune system will be depressed for up to a year after. He will have lost all of his hard-acquired immunities. He'll need to have all his baby shots again. He'll have to be protected from bacteria, fungi, and viruses for up to a year afterward. There's a one-in-three chance he'll get shingles sometime in the first three months. There will be another, stricter, diet to avoid fungi and bacteria. The GOOD news is that he'll probably lose all his allergies, too.
He'll have MRIs every three months for a year, then every six months thereafter.
As I said, Jay's way to handle all this is to ignore it all. I just tell him where he has to be and when. I'd be happier if I could get him into imaging and stuff, but his way is to bury himself in work and computer games. The first few weeks, THE TUMOR was the only topic of conversation - everything came back to it - every other story on the news was someone else with cancer. It got to where I declared cancer-free days. No mention allowed! Now, we're pretty much back to normal. I'm nagging him to fix the hot water heater and do the taxes, etc., before the chemo starts. I'm worried that he will get tired. He plays computer games. Like I said, back to normal.
So that's the plan. Now I turn you back to Jay for periodic updates.
Sincerely,
[Silk]
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This letter kicked off some memories. Like the day after his first surgery, when we first met the oncologist, Dr. W[---]. She said the tumor was "mixed. That means different kinds of cells." I asked "What kind of cells, exactly?" and she answered, "That's not something you need to know. It wouldn't mean anything to you anyway."
Well, when she said that, Jay tensed, gasped, his eyes got big, and he glanced sideways at me. She obviously didn't know who she was talking to. NOBODY says something like that to ME! I didn't explode. I just said "Why don't you tell me anyway." She did, and she quickly learned that I not only understood, but I was capable of drawing conclusions. I guess they don't see that very often.
Jay went through three cycles of the intense chemotherapy, but we never made it to the marrow transplant. He had none of the expected side effects. None. His immune system was only slightly depressed. All of which leads me to wonder if it was intense enough. After the third cycle they did an MRI, and he had no sign of recurrence, so they scheduled him for the transplant about six weeks hence. But about four weeks into the six weeks, I noticed something odd about him, and requested another MRI. It had been only a month since the previous MRI, but Dr. W[---] had learned to listen to me, so they did the MRI - and the tumor was back. Instead of the marrow transplant, he had another surgery, followed by a different chemotherapy.
Reading about the diet reminded me of an incident a few years after Jay died. I had gone to Rochester to visit his father. One of his sisters was also visiting. She and I were in the grocery store, in the fresh vegetable section, when she made some comment that my not feeding Jay fresh vegetables probably weakened him and contributed to his recurrence. I totally lost it. I screamed at her and cried. That absolutely isn't me to react like that, but she had no right to say anything like that. She knew NOTHING about what we were dealing with!
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