In the chair
Today's the first time writing an update from the chair. Fun!*
After the experience last time, I just had a chat with my RN about covid mitigation efforts they're using -- she recommended I write a letter to some of the hospital "higher ups" since they could at a bare minimum re-institute a rapid test or screening step on intake, check room CO2 and install a couple of air purifiers to help keep patients safe. I'm relatively luck for being young and lower risk, but it still was a real downer to have to go through this at this time and I wouldn't like it to happen to someone whose underlying health is not so good (which is most everyone here).
Speaking of going through this, we're not quite in the clear. Last time I wrote, I had just tested positive. A couple days later, Luke (inevitably) tested positive, and also erupted in just enormous quantities of snot (enough to keep him from sleeping at all for a couple of days). He had to really work the system to get Paxlovid -- on paper, he looks "too healthy," but we kind of knew he was going to have a rough time based on his history of gnarly colds, allergies, insomnia, etc. Thankfully with persistence he was able to get a prescription, and within a few days we were both feeling mostly better and started testing negative. My own case was ultimately pretty mild overall. I'm thanking the booster shot I had about 4 weeks earlier. So aside from ruining our vacation plans, things seemed like they were looking up.
Unfortunately, after the Paxlovid course Luke had a rebound that got worse than his first symptoms. I will spare you excessive details here, but we were starting to get anxious about it-- after the symptoms got bad enough, he tested very much positive again last Friday. He has not been a happy camper. His lung function and O2 levels thankfully have stayed good but he has definitely been experiencing some of the systemic side effects that make covid so concerning. Over the weekend he's seemed to start improving again, but it raised questions like "can two people just pass the same covid strain back and forth... forever?"
Anyway. In non-covid news, I was pleasantly surprised to find that the hair loss side of treatment seems to go in waves. After the major loss I reported in the first cycle, things slowed down for about two weeks and have seemed to be much lighter in cycle #2. Much of that is undoubtedly because I don't have much hair left to lose -- I'm definitely visibly bald on top and quite thin overall -- but some of it might also be related to getting a better cap fit on the second try, as he loss is concentrated in the zone that didn't seem to have as tight of a fit at first.
I also have a hypothesis that hair loss may be impacted by follicle growth stage, so there may be some hairs that are more resistant to loss than others at any given time. Seems likely but who knows. I haven't seen any research or information dedicated to breaking down exactly how cold caps work beyond reducing acute exposure of the scalp to the drugs.
Regardless, I've been upping my comb-over game, wearing hats and keeping my chin up in zoom meetings, and still able to feel a bit normal for the time being. I don't think I'm keeping much or any hair through to the end, but at least it's something. I even reached out to a salon to start planning for post-chemo hair and am starting to look forward to that process, oddly.
Otherwise, life keeps are trucking along. With the covid issues we have been grateful for family and friends chipping in various support -- Mom helped cook and shell fava beans and helped reduce the stick pile to mulch; other friends picked up groceries, and several meal delivery service gifts have come in very handy when we have been especially unmotivated and low energy. Seems like chemo itself is being fairly predictable and, while not much fun, is only a few days of being really out of the game. I was able to get in a burst of housecleaning this weekend as my energy was getting back to normal, and thinking about scheduling a cleaning service to help get things to a more manageable state in a few weeks. And I chat with my oncologist in a couple days and plan to start asking more questions about the next stages of treatment at that point. Looking forward to October and the end of acute treatments.
Love, Rosemary
*Writing but not sending, apparently. Still feeling good today, Tuesday AM at the time of publication. Luke's still testing positive, I'm starting to notice "chemo tongue" already.