It was a bad week. It was somewhat expected – for some reason, bad shit tends to happen surrounding my birthday. Every freaking year (the most famous year being when my brother went to jail and David lost his job). So when I heard on the Friday before my birthday that my brother had physically assaulted my mom, I knew this year would be no different. Still, I hoped it would be and all week I adjusted my birthday plans, trying to counteract the crap being flung at me.
Let’s see how that worked out, shall we?
Jack came down with the stomach flu on Monday. We spent 5.5 hours in the ER because Jack got a fever of 102 and became dehydrated from all the vomiting. Our experience in the ER was horrible. Cancer patients are supposed to be isolated from the general population…but that didn’t happen – we were told to sit in the waiting room and then the lady next to us started vomiting immediately. I put a mask on Jack and moved away from her. After an hour and a half, I had to call the oncologist on-call and asked what we should do – perhaps drive to another ER? Fearing we’d face the same kind of wait at the Oakland ER, the oncologist called to complain and we were moved to a gurney in a hallway. I later had to be asked to be relocated because a lady nearby started hitting herself violently and muttering under her breath. And nearly four hours into our visit, I asked David to call the oncologist again because we were STILL waiting for an IV and antibiotics – even though cancer patients presenting with fever should receive antibiotics within an HOUR of arrival. The oncologist chewed the resident ER doc a new one and we were given our own dedicated nurse within five minutes of that call…apparently the clinic is filing a report about the ER, as well.
Anyway, Jack started looking better immediately after getting IV fluids and antibiotics. He was doing well enough to go to school for a few hours on my birthday (Wednesday). I was feeling ill that day, so I stayed home and slept. I said it at the time and I’ll say it again – that was a decent way to spend my birthday. Nothing bad happened while I slept.
Thursday Jack woke up feeling ill again. His labs showed that he was neutropenic and we were told (with a sigh of concern) to stop chemotherapy.
Friday morning at 4:30am Jack awoke from a bad dream and started shivering uncontrollably. His temp hovered around 100 degrees. When I went back to bed, I warned David that it would likely rise above the 101.5 threshold (I had a work commitment that I could not miss). Right after Jack woke up for the day his temp spiked. He was on his way to the hospital by 8am. He was admitted and put on antibiotics for the second time that week. He was swabbed for the flu, RSV, and c.diff. The c.diff came back positive (probably acquired during that extended ER visit!) so he was put on a second antibiotic.
Jack’s ANC had somehow skyrocketed overnight, though – from 341 to 4,774. We don’t recall it ever being that high since his diagnosis almost two years ago. One of the oncologists at Kaiser said that was a high ANC for healthy people. His body is working hard to fight these illnesses. We are surprised – and concerned – that he actually has that ability considering that he is supposed to be immunosuppressed. But I guess a night off of chemo was all it took.
A bit of an explanation here: every time Jack’s ANC dips below 500, oral chemotherapy is stopped. When his ANC goes back up and the chemo is restarted, they start it at 50% of the highest tolerated amount before suspension. The dose is ramped up again over time as long as his counts stay over 500. This is at least the third time since August that Jack’s chemo dose has been suspended and restarted due to neutropenia.
Back in early August, pre-hospitalization, he was up to eight chemotherapy pills on Mondays. He is now down to two chemotherapy pills on Mondays. Two days a week, he takes no chemotherapy at all. That is not at all how it’s supposed to be to maintain remission during treatment.
Over the last four months, Jack’s body has become less and less tolerant of the chemotherapy he’s been getting for nearly two years. The doctors cannot seem to explain to me why that is. And it’s worrisome because he can’t consistently stay on high enough amounts of chemotherapy to be sure that any lurking cancer cells are held at bay.
In other words, every time chemotherapy treatment is suspended or doses are reduced, the probable success of the treatment is decreased. And every time that happens, our worry increases. We worry when there are new symptoms with no apparent cause. We worry that so many of the issues Jack has had over the last four months so closely resemble the symptoms he presented with at diagnosis. We worry every time the oncologists shrug their shoulders.
Oncologists, don’t shrug your shoulders. My son has cancer and you haven’t seen these issues before? Go talk to other oncologists and FIGURE IT OUT.
When I mentioned on Friday to a co-worker that Jack was going back to the hospital, she tried to reassure me – “Jack is going to beat this.”
I hope that is true – I hope with all of my heart. But so much of this cancer journey has not gone as we were advised it would and so many things are left unexplained by our oncology team. So I’ll believe it when I see it.