Conquering Cancer in the time of Covid
#7 Merry Christmas
Well, I know I’m late posting an update for the nicest of reasons. In the past few days, I’ve had emails and texts from quite a number of dear friends, asking after me, checking in. Thank you, thank you. It’s been really touching and a much needed pick-me-up to be remembered and cared about. I’m so isolated here. It’s like being in solitary confinement, without the jail bars. But with the huge Covid surge right now, hospitals completely overwhelmed, virus everywhere, the only safe place for me truly is home alone.
So…I’ll start with some good news…This second chemo round was much easier, at first. With the addition of heavy Ativan in the infusion and Xanax at home at 2pm and 10pm, I just spent the afternoon and evening in bed, sleeping much of the time. My daughter and 3-year olf granddaughter Facetimed and we did a virtual hangout for a while, which was terrific. But then I really needed to sleep. And, thank heaven, I really was able to. No nausea to speak of, no dizziness, just fatigue. I was so relieved and thankful. Now I have some more confidence that I can make it through another 2 rounds of this heavy dose stuff. I’m halfway home in the first stage.
On the flip side, I haven’t recovered as fully or as quickly as the first time. It’s a week later now and I’m still fairly fatigued. Last time, I was on my bike after 6 days. I’ve been able to walk the last couple of days and take a relaxed bike ride today, but I’m generally not as energetic. The first couple of days following I had some uncomfortable nausea. Took a Zofran (a prescription pill) one night. But have discovered that the cannabis tinctures help even better! And they also alleviate anxiety and improve my appetite. I don’t like to be constantly buzzed so I’m taking a little less than prescribed, a little less frequently than the doc recommended. But it’s very helpful. I’m really happy to have the tinctures.
If you’ve already heard enough medical details, skip this paragraph J. For those who are curious…I’m also experiencing thermostat challenges. I’m cold most of my waking hours. My day uniform includes an undershirt and sweater, and I still need a hat, heating pads, the space heater, and/or blankets much of the day. Then I suffer from terrible night sweats while asleep. I wake up covered in in a thin film, wet, uncomfortable. If I throw off the covers, I’m chilled. Sleeping itself is another challenge, despite fatigue. The first few days after the chemo, stretches of zzzzs are truncated. My kidneys go into overdrive to clear the chemicals, and I have to visit the loo every 1.5 hours. The last couple of nights, I’ve finally been able to snooze for a 5–6 hour stretch. But it’s not really enough. But there’s one other side effect that’s the most psychologically challenging. The chemo makes my heart race and skip a few beats from time to time. Thankfully, no afib! But when I lie down, I can feel it thudding hard and faster, and it takes a series of slow, deliberate, meditative breaths to settle me down enough to rest. Last night it was better. So, hopefully, it resolves after a few days. I find it very upsetting when my heart doesn’t feel right, which is to say when I can feel it thudding and skipping.
And now, back to the question of hair…. As expected, my hair has been falling out. Not in clumps but it’s shed and thinned a lot. So I needed to take it off, which turned out to have been more traumatic than I anticipated. I talked to the kids about how to buzz it and they had lots of good advice. Cut it short first with scissors. Progress in stages. They asked if I wanted to have virtual company, which was really thoughtful. And I discovered I did. So while Rodger was out, and I was just a little buzzed from the cannabis, Melysa and I Facetimed and I lopped off my ponytail. Tears unexpectedly flowed. The ponytail is now secured in a ziploc baggy, in my desk drawer with the babies’ first haircuts. It’s thin…and blonde and purple…and a keepsake reminder of who I was before this. Another two days passed before I was ready to go farther. My hair was just a chopped up mess, about chin length, and strands kept coming out everywhere. On the pillow, in my hat, on my nighties, clogging the shower drain. I washed it and brushed it and the brush was full. So last night, while hubby was zooming with his book club, my daughter got on Facetime with me again and I finished the job. I clipped it close with a scissors and then used the ½ inch buzzer. It’s not professional. Very ragged. Very close-cropped. As daughter said, it’s evocative of Auschwitz photos. Not an attractive look at all. But it’s done. And it’s no longer shedding everywhere. Hubby came in as I was finishing and his unconscious grimace was unintentionally hurtful. He wants to be supportive but his expression reflected my new appearance. He wants to smooth it out in back but I’m not interested. I’m covering up with a hat anyway and no one is here to see. Eventually, the stubble is going to fall out anyway so it doesn’t really matter if it’s not even. I’m distressed every time I look in the mirror now but glad to be over that hurdle.
Meanwhile, the heavenly tests keep coming. We just can’t seem to have an uneventful week. The day after chemo, Thursday, we had another planned power outage for Edison to replace yet another power pole. As we did two weeks earlier, husband and I headed to Burbank for my Neulasta shot before firing up the generator when we got home. It was humming away nicely when Rodger wanted lunch. So, he turned on the toaster and the microwave, and half the house blew out. Fortunately, all the refrigeration was unaffected. But random circuits were out. The TVs, my office but not the adjacent rooms, his bathroom but not mine. It was weird. None of the circuit breakers had blown. We had no idea what happened. So we called our friend, neighbor/electrician, and g-d bless him, he came over to troubleshoot. Turns out there are circuit breakers on the generator itself and one of those had blown. So we had lost half the ‘bus’. (I still can’t explain what the ‘bus’ is but we blew it.) He was able to easily reset it with just a push of a button. So we had a good lesson on not overloading the generator and on what to do if it happens again. And since he was here, he was also able to splice the cord and female receptacle we got together, so now we can plug the RV in for full 50amp service at the house. A happy ending it would seem, right? Nope, remember this is us. Happy endings are elusive these days.
The next day, when husband came home from golf, he discovered that his frozen grapes were mushy and the ice was melting in the kitchen frig. Alas, the kitchen frig was on the fritz. Did the power issues of yesterday blow it? Who can say? But the timing seems rather suggestive. Instead of resting on the couch, which I really needed, now I had to troubleshoot…pull the manuals…try the first measures…no improvement. We called Dacor and got an actual technician on the phone right away (Good!) but his fixes didn’t work either. I discovered a whole control panel, right in front of my eyes all these years, that I’d never paid attention to. However, the functionality was blown. Unresponsive controls. So we called the repair people recommended by Dacor. First appointments not until Tuesday, 4 days off. Next step, empty the frig. Fortunately again, we have redundancy. But it took time and energy that I didn’t have, to move as much as possible into the garage and the motorhome frig/freezers. Again, happily, we had enough room. It was a good opportunity to toss out some of the old stuff that had collected and disappeared into the nooks and crannies. But we also lost a number of fresh things because I just ran out of steam and they remained in the unit for too many warm days.
Yesterday, we had a service appointment at 11am. So of course, just to make sure we didn’t have easy smooth sailing getting it repaired, electricity went out again unexpectedly at 9:30. It had also been out the day before for a couple hours. Feels a bit like a third world country around here these days, with spotty electric service. Edison reported the outage was widespread and expected it would be out until 7pm! So we fired up the generator, again. The generator has definitely been a very worthy investment! Thankfully, Pedro, the serviceman, got it cooling again. He replaced a burned out relay switch and the thing fired up. But wait, nothing could possibly be that easy. The control panel did not reboot. Pedro thought it might become responsive as the unit cooled, and that even if it did not, the previous temperature settings would prevail. That would be simple and easy. But this is us…so…Not happening! Now the freezer is too cold at -6 degrees and the frig is too warm at 41. I did thoroughly clean it out, which is nice. But it needs another repair. Parts are ordered, and Pedro assured hubby that the temp is safe for food. Despite the fact that my online research says the frig really needs to be below 40 degrees, hubby is very happy that he has the go ahead to refill it.
And that’s my Weekly Update. Tonight is Christmas Eve. We will spend it the way we have spent every holiday since March. Home alone, together. We have ordered the traditional Jewish Xmas Chinese take out feast. Looking forward to lots of left overs.
Wishing everyone a healthy, happy, solitary, zoom holiday gathering.
Merry Christmas to all and to all a good night.
Lots of love,
Xo
Jill
