Conquering Cancer in the Time of Covid
#13 — Triskaidekaphobia? or Good Luck?
March 7, 2021
Dear Friends and Family,
This is missive #13. Is that a lucky omen? Or should triskaidekaphobia rule? For many years, I’ve considered 13 to be a lucky number for me. My son was born on May 13! My birthday is on May 26, double 13. But then I received my diagnosis of BC on Friday, Nov 13, a date which will live in infamy. So, is 13 lucky or unlucky? Does it even matter? This is missive #13.
Hubby and I were soaking in the spa before bed the other night. The moon was bright so the stars were only sparsely populating the dark expanses. Orion was clear and prominent, the three twinkles of his belt the most salient feature in the heavens. I was so grateful to be there, warm, wet, comfortable, alive. How many times have the hub and I expressed awe and gratitude for living here? More so now, during this isolation and loneliness, than ever. We live in a 5-star home, in a 5-star place. That night, I was also observing how lucky I have been to be able to just be me, for me, during this time. I don’t have to worry about being strong enough or ready enough to go to work, to function through the day, to be productive. I have the extreme luxury to just have to do whatever I need to do to get well. I can sleep when I need to, eat when I have to, eat what’s best/what I crave. I don’t have to take care of anyone else’s needs (except being considerate and thoughtful for husband’s needs but he’s largely independent and self-sufficient). I only have the responsibility to myself to do whatever I need to do to get better. And, being home, I haven’t had to concern myself with getting Covid from anyone else. There’s no one around to catch it from. Even when I leave the house and venture into the “hood” for exercise, the roads are largely empty. When I do encounter neighbors and friends, there’s plenty of room for visiting/conversing without taking any risks. As those chance meetings are pretty much the only in-person social interaction I’m getting lately, I’m really grateful to have local friends and to bump into them from time to time. But the bottom line is that given my awful circumstances, in fact, I’m in an enviable position to focus on recovery and healing.
I’m continuing to take full advantage of my medicinal cannabis meds. I’m not as seriously and consistently nauseated as I was for the first couple of months, but every day, in the late afternoon/early evening, I get a slight touch of the ‘queesies’. So I dose up. The THC relieves the nausea, and it also helps me to be in both my head and in the moment at the same time. In that way, it relieves my anxiety, too. I can just exist as me right at that time — not needing any other stimulation — keeping a silent running dialogue, a personal rumination, going in my mind with myself. So I’m present but also not present. All at once. And I can just focus on being alive and aware and that’s enough. Nothing else matters. No future, no past. Although the past makes it all possible. I’m the sum total of all that I ever was, so the me that is here right now is all of me. Added up. In total. Just existing in this time and this place and this head space. No worries about awful survival statistics, about the challenges and decisions ahead, just breathing and thinking in the here and now. It’s tempting just to dose up from sunrise to sunset and there are very few reasons why I actually shouldn’t. Nevertheless, the dutiful, responsible, grown up in me insists that I spend at least the majority of my waking hours fully sober. Maybe that’s something I need to outgrow or reconsider? Maybe I should shed the Protestant ethic my Jewish parents instilled in me, and just self-medicate all day every day for a while? It’s tempting. I definitely feel much better with a little buzz going.
I had my second Moderna shot last week! Hurray! We went immediately from my chemo infusion in Burbank to the same UCLA Health vaccine administration site just minutes from home where I got shot #1 on Jan 28. We were early but it didn’t matter. UCLA has been incredibly impressive with their vaccine administration. The whole thing was seamless, easy, well organized, efficient, friendly — and the best part, of course, is that the shot went into my arm! After 15 minutes in the ‘recovery space’, I was free to go home and rest. The remainder of the day was uneventful and typical for a chemo day. As was the early part of the next day, Friday. Until about 2:30, roughly 24 hours after the needle deposited the mRna. And then, the dreaded, but welcome, immune response kicked in. I started to notice that I was feeling just a tad off. By 3:30 I needed to crawl between the covers. Husband was out for a long bike ride, but my daughter and I were hanging out on FaceTime and although I really coveted sleep, I was happier to have her company and not be alone as I descended into the depths. By the time hubby returned, I had full-blown proof that the vaccine was working: fever, aches, chills, fatigue. It was interesting to feel so sick when I knew I really wasn’t. I knew the nastiness was only temporary and well worthwhile. Psychologically that was a relief, but it didn’t mitigate the symptoms at all. When I am feverish, I feel cold. So I climbed into the spa to warm up and float for a bit, which was wonderful. But then, once I got out, I was overheated and couldn’t cool down. It was a Goldilocks scenario — too cold, too hot. Finally, I was able to close my eyes and sleep it off for a few hours. And indeed, by about 10pm the worst had passed. Fever was gone. Aches and pains subsiding. Still, the rest of the night was pretty rough. It was Purim and I completely missed the whole celebration. No drinking, groggers, or hamantashen for me this year. I awoke the next day, Saturday, feeling much better but thoroughly wiped out. In fact, it took me about 3 days altogether to recover some strength and energy. It was a tough week. However, I have no regrets — only gratitude that I got my shot. A multi-layered shot — a shot at a Covid-free life, a shot at a social life, a shot at seeing my family and friends, a shot at a life before life ends.
And the real payoff will be next week. The kids are coming! The kids are coming! Our son’s family will arrive mid-week and our daughter will join us at the weekend. I am absolutely over the moon in anticipation. It’s been many hard weeks and months without them and now, finally, we can start to hug again. Believe it or not, I still have all their Hanukah gifts wrapped and piled up around the living room fireplace. Finally, we can distribute them! We will see our little babbling munchkin in person and hopefully she will recognize our faces from the ipad screen. The following weekend, hubby and I plan to go to our daughter’s house to see her girls. I’ve been fantasizing about these reunions for so long — it seems almost unbelievable to think it can actually happen. It’s another shot in the arm that I desperately crave.
Update on the motorhome. It’s still out for repairs. It was supposed to be completed and returned this week, but nothing is ever as expected these days. When they removed the rear cap, the structural damage to the frame turned out to be more severe than anticipated. So it had to go to another shop for that specialty fix. Bottom line is that it will be another few weeks until repairs are complete. Which is actually just fine because it’s just been taking up space in the driveway anyway. The Amazon delivery guy mentioned yesterday that he was really happy that it was so easy to turn around in the driveway with it gone. Ironically, the replacement icemaker that we’ve had on order since October has finally arrived at the appliance repair shop. So as soon as the body shop is done, we’ll also get that installed. When we will be able to travel, and where we will go, is the $50,000 question. But it sure will be nice to have the rig fixed up and ready to rock and roll when we are.
I don’t know if I mentioned before, but my sister enrolled me in a women’s group called Campowerment. Formerly, this group met a couple of times a year for “Camp”. Sis has been an enthusiastic camper for a number of years and has been encouraging all the women in our family to join her. To her disappointment, none of us took the bait. But since Covid, Campowerment, like the rest of the world, has gone virtual and instead of a couple of weekends of workshops, there are zooms daily. So, my sister very generously gifted me a membership. And I’ve started sampling the wares. The workshops cover an exceptionally wide variety of endeavors — from yoga and breathworks to crafts and meditations. I’m eagerly anticipating a breathworks class tonight. I really love this practice and the facilitator is a favorite of mine. Earlier this week, there was a Spirit Guide class, which my sister and I both decided to attend. I’m not sure what I really expected but what it actually was truly astounded me. It turned out to be hosted by a professional medium, who shared her experiences of communicating — actually talking! — to what she calls her Spirit Guides. And her intention was to teach the rest of us how to get in touch with our own spirit guides. Yes, spirit guides are not living people — they exist in another realm or dimension. To see them, one has to unfocus the eyes and open the senses. The medium says she has actual conversations, out loud, daily, with her guides. It was such an unusual experience. To be honest, I’m not a total skeptic and I tried to keep a very open mind. I’ve had experiences that lead me to believe that there’s more to the universe than meets the eye and that there’s an energy or force that connects us all. And I’ve wished to have Spirit Guides watching over me (who doesn’t want that?). It was really unusual though to attend a workshop with someone who actively and avidly communicates with a nether world. I do want to say that I don’t think this is a typical example of Campowerment, and that I’ve really been enjoying the other, much more mainstream workshops. If any of you are interested in learning more, Campowerment is offering a free 2-week trial membership. Check it out, online, from the comfort of your home.
This past Thursday, I brought my computer to chemo to write from my infusion chair. I thought I’d just see what flowed there. Here’s what resulted as the Benadryl took effect, once again zoning me out into loopy land, before I had to sign off to don my ice mittens and gloves. (Sadly, the ice isn’t completely protecting me from peripheral neuropathy. My feet are still A-OK. But I have funny sensations in my fingers. It’s hard to describe — my fingertips just feel different. They’re not painful, and I still have very good sensation. But I’m finding that I’m repeatedly stimulating the first 3 fingers of both hands and the skin on my fingers is wrinkly like I’ve been in the bath for too long. Dr. says, yes, that’s neuropathy. Nurse observes that maybe it would be worse without the ice mittens so I continue to use them, although the ice is very painful as my hands get so very cold. I just have to cross my weird feeling fingers that it’s only temporary.)
So…this is what flowed from my infusion recliner:
Today is my 6th Taxol infusion, which brings me to the halfway mark. I’ve been in chemo since Dec 2 — so that’s 3 months. And I have 6 weeks left to go until April 15. It cannot come fast enough — although once again, I’m cognizant that I do not want to wish away my time. But I’m very, very tired of this. I’m finally acclimating and stressing less about these weekly sessions as evidenced by my blood pressure reading just now. Usually we have to wait a few minutes for me to relax, and even then we’ve repeated it more than once to get a healthy reading. Today I was in a healthy range right off the bat. I’m losing my fear — of chemo and of the road ahead. What will be will be…I’ll either live or die…I am doing everything I can to get well but if it doesn’t work I will just have to deal with it, maybe die with it. That said, I really do not want to die in pain, emaciated, connected to tubes and machines, in a cold hospital room. I want to go peacefully, at home, surrounded by my loved ones. I want to choose my own time, if it’s inevitable, before it’s miserable. I want to plan my memorial service, and maybe even have one before I die as I mused about in one of my first writings. I had the idea also, that I want this memoir to be printed and available for my friends and family at my funeral and shiva services. This will be what I leave behind as my own memorial.
I’ve been doing a great deal of research into surgery and reconstruction. I talked to the people at the Breast Reconstruction Center in New Orleans this week…they’re world leaders, or at least national leaders, in the field. Cutting edge techniques. But I don’t really want to have to go to New Orleans. I want to try to have autologous reconstruction…it’s a transplant of fat from the abdomen and/or hips into the breast. So there will be no foreign material implanted to leak, or cause a rejection response, or a contracture. Also, implants only last 10–15 years. So, taking an optimistic outlook that I’ll be alive and healthy in 10 years, I don’t want to have to have yet another surgery to replace them. I’ve also learned that implants after reconstruction are different from implants for augmentation. For a typical “boob job”, the implants go behind the breast tissue. So they’re not what you feel and they’re warmed by the body. For reconstruction, they sit just behind the skin since there’s no breast tissue left. So they’re cold and unnatural feeling, even if they do look beautiful. So, if I can do autologous, that’s what I prefer. That said, the surgery and recovery from autologous are significantly more arduous — even brutal I’ve heard.
My biggest concern is whether or not I’ll have enough fat. You all know I’ve always been thin…and now I’m as thin as I’ve been since I got married. I’ll have some time to gain some weight after chemo ends but even so, I don’t historically store my fat below my belly button. A tummy tuck is advertised as a silver lining to the procedure…but I have never needed or been a candidate for a tummy tuck.
There is a New Orleans Dr. who comes to LA regularly to perform these surgeries with a Beverly Hills surgeon, so I contacted that office. Indeed, they were happy to make an appointment for a consult for me immediately. But then I discovered they don’t take Medicare. So I’d be fully out of pocket to the tune of about $80,000! That’s a big chunk of change. On the other hand, if I travel to New Orleans, my insurance will fully cover medical expenses. $80,000 will easily pay for air and hotel in New Orleans for the few weeks I’d have to stay. So, the choices are narrowed — use a local Dr. or go to NO. Rodger took some very weird naked photos of me to send to NO for their evaluation. I’m very anxious to hear they’ve been properly received so I can delete them from my phone! I never want anyone to accidentally stumble on these. And, I have an appointment to meet with my local breast reconstruction surgeon in a few weeks for an in-person evaluation of my options here in Los Angeles. So this is still pending…stay tuned…..
In conclusion, right now, here at home — I’m still hanging in there…getting more depleted as time passes…with each week of treatments my recovery time gets longer and I get further and further removed from my original baseline vitality. I need more and more rest and sleep, and I have less and less energy. My chemo/covid brain fog is real and frustrating. I have new aches and pains developing daily. But I’m still here, and, according to the medical professionals, I’m still doing really well. I’m still on track to be disease free and cured, and to recover from the treatment related side-effects. So, I’m soldiering on, counting the weeks, the days, the hours, until April 15. And now that I’m also Covid-safe, I’m looking forward to leaving my house! Even if it’s only to get groceries or empty my wallet at Costco. It’s kind of a weird experience…I wonder how many other people are having similar reactions? I feel a tad agoraphobic. All these months of sequestration have created a little fear of social interaction. So, not only must I recover from cancer, I have to recover from isolation as well. Those are really good recoveries to look forward to.
And that’s my 13th update for now. Stay well out there. Hopefully, we can see each other soon.
XO
Jill
