My first week at home following the CT scan was to be a recovery week, following five days in the hospital. When I had anticipated that first weekend, post Proleukin/High Dose InterLeukin 2 treatment, my plan was to go to a local kidney cancer meeting. I would be a bit soggy, post “flu”, but not contagious, just recovering from the immune stimulant. I planned to sit around, smile bravely, and look like those heroines in the old days of consumption.
As a measure of my mental competence, it was several weeks later before I realized I had missed the meeting, and in fact, had missed most of the week, and a good portion of the recovery week as well. My response to the Proleukin was such that I did not receive but 9 of maximum 14 doses and had to spend an extra day in the hospital to recover. The last thing I do remember of that week at UCLA was a doctor walking me down the hall, and seeing a sign overhead. At least I could read, and knew I was in the hospital, and then somehow I was home.
Flashes of memory come to me of those first few days, retching in the toilet, and then being sat in the shower on a tiny plastic stool, and being scrubbed by my daughter, a miracle of an experience. And more odd oblivion. At this time, my mother-in-law was headed deeper into an oblivion of Alzheimer’s, and I joined her. One WEDNESDAY morning, I was reading the paper v e r y s l o w l y…not my usual style, and I noted that the LA Times used Tuesday’s date. Obviously this was major mistake, which rather incensed me, and tried to interest my husband in this crisis. “What day is it?” He also thought it was Tuesday! For that matter so did the local paper, and the Wall Street Journal!
Naturally, I had misread or misheard this, so checked again, and asked again, and asked again, and read again. Even the damn computer was in on this mistake, but I waited patiently for corrections to occur, and still they–now the entire world–claimed it was Tuesday. And the family was getting a little odd in their responses to me. “Still Tuesday, Mom…”.
Not once all that Wednesday nor the Wednesday that followed it did I ever think for a second that I might have been mistaken. My testing, my logic, my checking and rechecking all these reliable resources did not change my mind, but it did cause me to wonder why everyone else was wrong. I figured the nice thing to do was to wait until they got it right.
It took me several months and a number of similar events to realize that this was a tiny gift from HD IL2–and insight into craziness, or whatever word describes the inability to accept fact in the face of facts from trusted and even beloved sources. No wonder poor Nana could get so angry at all of us, and no wonder that telling her something in a logical manner was futile. Her brain had been compromised by Alzheimer’s and mine by the medication that was trying to save the rest of me.
So was it working? Brain issues aside, I felt fine, or so I told my oddly polite and amused family. Taking a plate to the sink proved to me that I was doing all my household duties. Writing a 25 word email in 30 minutes proved my computer skills were intact. But what about those precious lungs and the icy white granules of tumor dividing relentlessly?
Without proof that the IL2 treatment was slowing down the growth, I would not have been permitted back into UCLA. To push the immune system into the kind of response that causes it to seek and destroy the cancer cells so well-settled into my lung, not only the visible ones, but their countless and invisible spores, is dangerous. No doctor wants to make a patient sick without hope that this synthetically induced sickness would drive out the virulent and relentless cancer cells, so it had to be shown to be worth the risk.
As I really became aware that I had missed one week and more in my life due to the treatment, and that I had no control of memory over what had happened in the hospital, I realized how hard it would be to readmit myself to the hospital. Excuse after excuse–all good ones, of course–delayed my walk into the lobby, accompanied for the first time by fear.
Years earlier, as my father lay dying in our family room, he told me that he was afraid to go to sleep, for feared he would wake up dead. We grinned wryly, and promised not to let that happen, though it did–everything but the waking up. I was raising my hand and volunteering to do just that, walking back in through the gray and damp parking entrance to UCLA.
Coming out the second week with equal blank spaces and some low blood pressure “events”, I was still alive, and could plan for my CT scan. Back to the same place where they had first found and failed to tell me of the lung mets, and let them try again to “image” them. (Is image now officially a verb?) One thing remained in my brain, and that was the knowledge of how to get the report from the CT scan done two weeks plus into my rest period after week two.
My son drove me to the scan center, as I was oddly not thought to be capable of going there myself, such a smart family, and parked as I rushed to collect the report. It was at the desk, as promised, and I tore open the envelope, and pulled up the last few sentences of the report into view. “Significant decrease in size of multiple pulmonary nodules!”
And back for more Proleukin. And a cake that I ordered for myself, which read (Charlotte’s Web alert) “Zuckerman’s Famous Peg…Amazing.”