Conquering Cancer in the Time of Covid

#11 A Time to Remember, A Time to Forget

Infusion #2 of Taxol is now in the history books. Once again, I was really doped up on Benadryl but this time, because I was already so woozy, the nurse omitted my Ativan. I think she was concerned because I could hardly stand up by myself to go potty and I easily zoned out into zzzzzs in the infusion chair. I was concerned that lacking the Ativan, my old queasy nemesis might ruin my afternoon, so I popped the old best buddy Xanax as soon as I got close enough to the mattress and snoozed the rest of the day away.

My daugher and granddaughter FaceTimed me while I was getting the infusion, so that was a nice distraction but it also was a sad reminder of where I was and why. Grandbaby had never seen a face shield before. Daughter took some screen shots of me in that ugly, sad position, something I’ve been avoiding. Haven’t taken any photographs of myself in this diminished state. But she wanted to memorialize the moment. I had no control and I’m not sure how I feel about the photos. But it’s done. Maybe in a few years I’ll want to look back? Right now I don’t want to look at all. I brought my new ice mittens and socks — peripheral neuropathy prevention. My toes got very cold but not painful, but the mittens are serious chillers! I had to remove my left hand more than once because I felt close to frostbite. Isn’t it oxymoronic that freezing burns? But then, the cold dissipated rather rapidly, not lasting as long as the infusion. I have a set of replacement ice packs but I was too drowsy to swap them out. Fortunately, whether due to the ice or not, I still have full feeling in my extremities.

Here’s a quick update on the ongoing saga of the appliances. You will recall that we got a new water heater a few weeks ago. Ever since then, I’ve noticed that sometimes the water in my shower is scalding and at other times I can’t get it hot enough. I finally figured out it’s related to the recirculator. It’s a device that keeps the hot water flowing at all times through the pipes so there’s instant hot water at the faucet. No waiting for the cold water to run through before it warms up. The recirculator is on a timer, so it only runs at prime times — apparently if it’s on 24/7 it can create pinhole leaks in the pipes. Well, when it’s on I get instant scalding water and when it’s off, the hot water just never materializes. So I called the plumber back and they diagnosed a faulty ‘check valve’. It seems the valve is allowing, rather than preventing, cold water to flow backwards towards the water heater. The recirculator overrides it when it’s on…but when it’s off… cold showers. So now we have yet another repair part on order. Here’s a shout out to McDermott Plumbing though for prompt, cheerful responsiveness. I’ll hold off on compliments for correct diagnosis and repair until that’s accomplished! Hopefully tomorrow — and in the meantime, I do know how to turn the recirculator on and off J.

Friday was a wonderful day! True to history, the day after treatments are “feel good” days. Steroids keep me feeling strong and upbeat. The weather created another “Reasons to Live in LA” winter day. Bright sun, blue sky, temps in 60s/70s. A fabulous day to be alive. So, for the first time in a month, I got on my bike and the hubby and I rode 20 miles through the Santa Monicas. It was just glorious. Yes, I was grateful for my pedal assist and, full disclosure, I dialed in more assistance and lower gears than I used to need. But still, I rode for almost 2 hours and got my heart rate up to 157 bpm without feeling any distress. So, that’s both good and bad I think…good that I can still manage that kind of exertion but bad that my heart has to work that hard. I do have an excellent excuse, of course. Chemo, duh — but also, as of Thursday’s blood work I’m now a bit anemic. No wonder I’m craving chopped liver and afternoon naps. Once again, my Dr. is still singing the praises of my blood work, and assuring me that my body can handle everything they’re throwing at it, but as time passes, I’m developing some unhappy symptoms and side effects. In addition to the low red blood cell count, my A1C is creeping up into a danger zone. Apparently, this is likely caused by all the steroids. There’s an irony. Steroids give me energy, but prevent my cells from properly metabolizing it. I’m hopeful it will resolve after therapy ends, but in the meantime, a diabetic diet is in order — nix the sugars and carbs, heavy up on cinnamon. Some of the other side effects are rather colorful — literally. The normally white moons of some of my fingernails are turning an unnatural pink/red. And now that the thrush has been cured, my tongue is a gray green, and my sense of taste is still stunted and altered. I’ve dubbed it “chemo tongue”. My complexion is no longer a healthy rosy pink, also favoring the gray green palette, and beginning yesterday, I’m noticing that the skin on my hands feels chalky. I know that’s an odd descriptor but I don’t know how else to describe it. When I wash my hands, it feels like there’s a dry, chalky substance coating them. Hand cream feels good but doesn’t change things. My skin isn’t dry or cracked — it just feels weird on the inside.

Back to Friday. After our ride, we spent some time in the late afternoon/early evening hanging out virtually with our girls. The hubby and I turned it into a virtual dinner party and enjoyed our evening meal with delightful entertainment from the 3-year old. And then we zoomed into our synagogue’s Shabbat. It was a special service, with a musical guest, singer-songwriter Daniel Cainer, performing from London. Rather than discontinue our FaceTime to stream the service, we kept our girls open on my ipad and zoomed into our congregation via the computer. So the girls joined us virtually for the service. It was so bittersweet….on the one hand, we could all celebrate Shabbat together, and on the other hand I’m desperately missing being together in person. The musical service was extraordinary. Mr. Cainer is a very gifted artist and the selections were moving and appropriate for this time. Themes of gratitude and blessing, holiness and healing. Then he performed a song about his grandparents, with a refrain about how they would be here today if they could. Well, that did it for me — pushed me completely over the edge. Quite without warning, tears and sobs just erupted from the depths of my mixed up feelings — from my despair, my fears, my loneliness — and from my sense of profound gratitude and blessing to be sharing the evening with my family. I can’t remember the last time I cried that fiercely, just clinging to Rodger and having no choice but to let it flow. Then the most remarkable thing happened. At that exact moment, our son texted me a simple, “how you doin’ ma?”. Rather than text back, I grabbed my phone and, thank goodness for adequate bandwidth, FaceTimed him in. Now we had the service on the computer, the girls on the ipad and our son on my phone, all of us together in that blessed moment. As proof that the universe truly is greater than we know, and that we all share meaningful, important connection, it turned out that at the precise moment I had been sobbing on hubby’s shoulder, our son had been overcome with the many difficult emotions and questions the whole sorry state of the world is weighting us with….my illness and distance, coupled with his relatively new parenthood status, are combining to bring him to that place in growth and development where everyone grapples with the grim reality of mortality. The transient nature of being. The fragility and fleeting quality of every moment. Miles apart, we melted down together at the exact same moment, and then came together at precisely the best moment. It was an experience of such profound awareness and connection, supremely bittersweet. We were all together, and we were all apart. And we are all feeling such depth of all feelings. What a time this is. So blessed and so cursed. So rewarding and so challenging. So lonely and so connected. A time to remember. A time to forget.

And all that brought me to another philosophical musing. I’m literally counting down the weeks until my chemo treatments are over. At the beginning, there was excitement to balance the dread. Excitement isn’t perhaps the best word, but in the sense that starting this new battle, with such an important outcome, elicited energy and focus and determination, I felt excitement. Now, at the halfway mark of chemo, I’m feeling mostly diminished and depleted and a little depressed. I’m tired. I’m facing difficult decisions. Every week, I endure another round of toxic chemicals coursing through my increasingly fragile, and shrinking, body. I just want it to be over. I have opened my calendar and counted the same 9.5 weeks until April 15 again and again. Why? Am I expecting the math to change? Hoping I made a mistake and really there are fewer weeks left? I find myself just wishing the time could pass at warp speed, or take me through a wormhole to the other side. And then I realized that what I’m doing is wishing my life away. These are the days I have — rather THIS is the day I have. Today. Only today. Hundreds of thousands of people are dead — millions are sick. Covid is getting closer and closer to home. Friends and neighbors are falling ill and they literally don’t have any idea where they were exposed. That could be me. I could be sick or lifeless tomorrow, or next week. I expect and hope to live until my treatments end, but that could kill me too. It says so right in my health chart where the Dr. checked off the box that says “Risk of morbidity is high due to toxicity of treatment” (in today’s world of open access health apps I get to see every ugly thing that gets recorded about my prognosis and status. Is that good? Sometimes — more on that in my next installment). I expect and hope to live to see my little granddaughters become Bat Mitzvah, graduate HS and University, maybe even get married. But there are no guarantees. So although I do want to be done with this suffering, I don’t want to wish away whatever time I actually do have. I really should be wishing to slow time down, to savor these beautiful days, just to be grateful to be breathing and thinking and feeling all these disturbing and unnerving thoughts and feelings. Is it possible to slow time down at the same time it is speeding up? Time is relative, remember? So can my days please race by until April 15 and at the same time, go slowly and deliberately? Can I remember to be mindful and fully present even when I just need to crawl under the covers into oblivion for a few hours? The irony of it all does not escape me. This is a time to remember. This is a time to forget.