29 August 1999
Dear family and friends,
After the last letter, you probably picture me six feet under. It's a strange see-saw. Anyway, strange as it is, we are okay. In many ways, better than expected.
I know Bill wrote about me fighting for my life and being willing to die. All true. Before the second brain surgery at the end of June, I had started to think often of dying. In my heart, I had let go of the kids and Bill. Dying did not seem so bad. Our friend Ed Rowe took me out for lunch and was concerned about my death talk. He attributed it to the meds and told Bill he expected that I would eventually be livid about them.
But, as it turned out, I was just getting fuzzier and fuzzier, forgetting things, losing time. I heard Bill ask Henry Ford's staff whether radiation would bring me back or was this the best we could hope for?
Anyway, I was surprised to discover that when I woke up after the surgery it was three days later! The first time, I startled everyone by waking up so soon--less than 2 hours after the surgery! I must have done something similar this time--I've been told that I talked, moved and seemed to understand things--but my soul didn't rejoin my body until much later.
The good news is that over time it came clear first to me, and then to Bill, that I was much better! I can't tell you how glad I was finally to hear him say so. Anyway, there's not much that I cannot do now--I can walk, talk, write letters, make decisions. I seem to be in pretty good shape! Considerably better than before!
I did start radiation in the middle of July and completed it at the end of this week. (We preceded it with a couple good conversations about how much I did not want radiation. In the end, I was converted. And the process has been amazingly quick and painless--give or take the one and one-half hour drive each way!) If I understand it correctly, I've maxed out brain radiation forever and am now free! None of the potential side-effects kicked in, except that the affected area did start to burn (after 2 weeks) and my hair started falling out in clumps! I now have hair in the back, but the front is very bald! I've become adept with scarves and hats!
We leave this Friday for D.C. to celebrate Luke Caroll Wallis' baptism-birthday on Saturday. (Bill is the Godfather and the rest of us are delighted to be related too.) We'll have fun. Then we'll leave as a family for Budapest (which we hear is beautiful and ancient)! There is a chicken virus that researchers in Budapest have been experimenting with for the last decade or two--the word is that it's not so good for chickens, but seems to benefit some cancer patients. It takes time--up to a year-- but we're eager to try it. (We are grateful, by the way, for any materials you all send to us that promise any kind of stasis or cure.)
It was very challenging to move from seizures alone on the bathroom floor a year ago Labor Day, to ER, to a three-day hospital stay that involved every test in the book, to going home to try to figure out what we were looking at and to discerning which surgeon (where) would be the best. Bill chose our surgeon, but at the last minute they pulled a switch and both Bill and I liked this surgeon the best. Jack Rock is gentle, human and easy to talk to. He does not seem to be afraid of death or to talk about quality of life. And, as it turns out, he is quite a good surgeon, as this second time proves as well.
We were pretty far into the process-- like June?--when a good friend who is a chemo nurse said, "Do you know that you still haven't seen an oncologist?" We were of course shocked.
So, we met with Dr. Barthell, an oncologist at the place where we went for radiation. He was tired and about to leave on vacation in two days. (He and his wife were planning to put their 5- and 2-year-olds into the back seat on Friday at 6 p.m. and drive to Quebec where his wife grew up.) But, more importantly, Barthell was completely straight forward about the limits of radiation and chemo. "We can make you really sick," he explained. "If you want to be made really sick, find another doctor!" Bill and I both breathed a sigh of relief--THE TRUTH!
So, we continue to be very grateful for prayers. Letters, emails and cards help keep us sane (even if we don't answer them individually!). Send us any word that you want! We send you all our love--now and always!!
From Bill: August 29, 1999
September 1 will mark our fifteenth anniversary. And it is now just a year since Jeanie collapsed under the tumor. Somehow these days co-mingle for us in memory and meaning. Our vows cover it all in ways providential and unforeseeable. Together we choose it all yet again.
Today Jeanie finished the course of radiation and we are joining that to our celebration in an overnight away at the cabin. We're about to go for a walk under the full moon. (Since it was full September 1, 1984, we have also marked our anniversary in moons--by such count this is our 190th I believe).
The radiation treatment, be it due to prayer, nutritional supplements, or pure will, has been free of illness or fatigue. Jeanie did have a periodic fever which left the doctors anxious, since the steroids which she takes would mask any infection. Being hospitalized for a couple days of testing drew only the conclusion that it was the heavy-duty meds themselves which were taxing her liver and prompting the spikes. We really like the smaller Mt. Clemens hospital, and all the folks who have been treating her there.
So what's next? We go to Budapest, no less, for a viral treatment which our oncologist here is gladly supporting in lieu of the blunt and useless tools he admits having at his disposal. It's a chicken virus, harmless to humans. They discovered this thing when the chickens died and the farmer got better. Cancer cells apparently have a docking port for the virus. In effect it marks the tumor cells, then a vaccine heightens the immune system's search for it. In a way, it's not unlike what had been working well in the Nashville treatment, though with a different mechanism. There is a scientific letter about it in the May 5 Journal of the American Medical Association. Which means it will be eventually available here in trials, but not soon enough for Jeanie.
The other providence is that, against all expectation, the Nashville doctor gave us our front money back. We had borrowed cash from The Witness which was subsequently covered by friends. Since the insurance company paid, at least sufficient for the doctor's needs, he sent the reimbursement to our Central Methodist JWK fund. That is what is enabling us to go, and even take the girls along. The treatment there will be in large part out-patient. Jeanie is doing so well that we are looking forward to a spirit of vacation in this. My Mom, who's never been out of the country but yearned to all her life, will even accompany us. It feels full of life and adventure.
I'll confess that my last letter was written having just turned a corner of despair. The radiation decision had left me in deeper resignation than I knew. I was explaining to a friend (in front of Jeanie) that what we, and the doctors, were hoping for was six months of stability, when Lydia stomped her foot, threw her pencil across the kitchen, and ran out saying, "I told you I don't want to hear this kind of talk any more." It was like a another zen whack or a Word anointed. I woke in the middle of the night and journaled my confession. Next morning Jeanie allowed she was ready, in the aforementioned freedom, to keep fighting, and we cranked up the alternative search again in earnest, settling upon this strange and exotic, long-shot approach.
A couple evenings ago, at the behest of and brokered by a good friend, we took Jeanie to a sprawling, working class, charismatic church to be prayed over by a circled of tongued warriors. It was good. I almost always delight to be in the midst of tongues, experiencing it like being washed in rainfall. I'm generally able to mingle my own silent praise and intercession in the sound. For one woman in the group, however, we were way too peaceful, quiet, and receptive. Well, perhaps not "receptive"--I think her measure of that would be for us to break down in sobs, or burst into tongues ourselves. I suspect she doubted our salvation (it's probably just as well there wasn't time to talk politics), but that was not our experience of the others, vulnerable and sweet-spirited, who pressed their hands upon Jeanie in anonymous love. Yesterday, she slept the morning through. Our friend declared this good, saying, "If this tumor is gone, I hope you'll credit the prayers at least as much as the chickens." Hey, count on it dear friends. And also