Conquering Cancer in the Time of Covid

#14 Family Reunion/The Home Stretch

March 31, 2021

It’s been a while since I’ve checked in. I’ve been busy riding a roller coaster. The emotional highs and lows of the past few weeks have been rather radical. I’ve been distracted in a good way, and also distressed.

The good stuff first…. We have finally been able to visit with our kids and grandbabies and that has been absolutely wonderful. It was the first we’ve seen each other since September/October. What a beautiful reunion and what excellent medicine. First, our son and his family drove down from Berkeley and then a few days later our daughter joined us for the weekend. The following weekend, hubby and I drove to Encinitas to spend a few days with our daughter’s girls, too. We all hugged more tightly than I can ever remember and the love that passed between us released sobs and tears. Our grandbabies have grown so big in such a relatively short time (although it felt like an eternity as it passed). The tiniest is up from all fours onto two feet, walking and babbling. She comprehends everything we say and responds in full baby nonsense…”dep dep dep”. She’s a flirt who is seriously enamored of Poppi. It’s no surprise that she relishes her food, considering the gourmet cuisine that magically and seemingly effortlessly materializes from her parents’ kitchen. I’ve never cooked with such a degree of professionalism, even for adults. I simply have neither the skills, nor the determination. And she loves it. The sweetest “yum” sounds express her joy as she chews her chow. She’s starting to have the full spectrum of human emotion and watching the new feelings play out in full living color on her face as she experiences and processes them for the first time is really a trip. Once, as she felt rejection when our daughter’s dog ran off to play with someone else, it happened in slow enough motion that we were able to capture it on video. The little bottom lip quivered and protruded, eyes cast down, and then the sobs followed. Our daughter expressed it perfectly, in the baby’s words, “I’m having a feeling!”

Our reunion with the older two girls was equally enthralling. The hugs and cuddles were incomparable. Our almost 4-year old, has been asking for a very long time when we could come visit again. She has really missed us, too. I’ve been telling her for weeks that when I finally was able to come visit her, I was going to wrap her in a super tight bear hug and not let go. Sure enough, upon our arrival, she met me at the bottom of the stairs and flew into my outstretched arms. Only reluctantly did I release her. Several times during our visit, she snuggled up for more, once insisting that Poppi get in on this family hug, too. It was precious and priceless and way better than Prozac for a sad Nana. I’m not deluding myself that her only motivation was to visit with Nana and Poppi. She was particularly excited and anxious to finally get her Hanukah gifts, which had been sitting all wrapped up adorning our living room fireplace since December, reminding me daily of how badly I wanted to deliver them! These older two have made enormous progress on their bikes (which were gifts from us and we take special pleasure in supporting) and enjoyed showing off their new skills, standing up on the pedals, shifting gears on the 7-speed we got for the almost 8-year old for Hanukah, careening around tight turns. The almost 4-year old is balancing at speed with no feet on the ground on her balance bike, making really tight turns and quick stops. They’re so proud and we’re so proud.

None of the family have been able to visit during all this chemo time, so I think they were a bit shaken to see up close the toll it’s taken, especially our adult kids. It’s not as obvious on Facetime. But they were really supportive, helping me learn to wear the beautiful Hermès scarf they gifted me for Hanukah, taking some family photos for posterity, pampering me a little instead of me pampering them as usual. Plus it was the first time our son and daughter have seen each other in many moons. Watching their embrace was as heartwarming for me as receiving/giving my own. We were all so starved for each other. We just devoured the time, and it passed so quickly. In all honesty however, as invigorating as it was, it was equally exhausting. Late night talks replaced afternoon naps. Despite all the considerable help they offered in the kitchen, and the take out food we brought in, there were lots of dishes, and sheets and towels when they left, toys to put away. It was worth every bit of it but it definitely exacted a toll. I paid a price on the back side but I’d do it again in a heartbeat. It was the best possible medicine and I really needed it.

I’ve also been able to have a few personal pleasantries. Providence Hospital has a program called Thrivorship, and along with 4 months of free access to nutrition counseling and various zoom activities like yoga, qi gong, and meditation, they offer 4 free massage or acupuncture treatments to both patients and their support companions (hubby). I’ve had one acupuncture treatment and 2 massages so far. They’re perquisites of having a deadly disease for which I’d much rather not be qualified, but they’ve been quite lovely. I had my second massage this morning. It’s nothing like the deep tissue or Swedish massages I’ve always preferred but way better than nothing. I can’t lie on my stomach because of the port-a-cath in my shoulder so, sadly, a good back massage, my favorite part, is not possible. But the masseuse spent some good time on my hands and feet. And hey, it was gratis so I’m definitely not complaining.

And…now the other stuff…I’m almost at the finish line. It’s definitely in sight and getting closer by the day. But I’m limping towards it. Chemo started on December 2. That was a long time ago — to be specific it was 18 weeks ago. My little body has been falling down the rabbit hole and clawing my way out week in and week out for months. To say I’m tired is an understatement. I’m tired, and I’m tired of being tired. I’m physically depleted and emotionally exhausted. I keep thinking about the Olympic marathoner in 1984 who staggered into the last lap at the Coliseum, barely conscious, unable to walk straight, and almost collapsed before she eventually reached the finish line. The whole world was watching, horrified and terrified. I can relate to her right now. I’m staggering around, reaching for the finish line, 3 treatments, 2 weeks away. I cannot wait to get there. Physically, my doctor and nurses report every week that I’m still going strong. My bloodwork is really good, which is to say my liver and kidneys are not crashing from all the toxins they’ve been filtering for so long (although my acupuncturist says my liver is screaming for reinforcement troops). My bone marrow is keeping up, replenishing my red blood cells. And my white blood cell count is also in good range. I do have a few yucky side effects going on. Some peripheral neuropathy in my fingers. They’re a bit numb, but not painful. Several of my fingernails are still kind of orange and one nail is lifting off the bed. I still have some eyelashes and eyebrows but they’re thinning. I’m not sure I’ll have any left by April 15. Because most of the cilia (the little hairs) that line my respiratory tract are gone, I’m dealing with bloody, stuffy noses. Nausea, that old, ugly enemy, is rearing its head again as the cumulative effects accumulate. It’s not nearly as bad as it was early on, but it visits regularly every evening around 5–6pm. And I just don’t have much stamina. My easy 3-mile walk through my neighborhood hills isn’t so easy anymore. I’d be very happy to spend most of every day in bed. Often it’s tough just keeping my eyes open. None of this is earth shattering or completely debilitating. So I’m surviving the poisons…hopefully, the bastard cancer cells are not! Even a single stray cell that doesn’t succumb could come back to rear its ugly head and take me down. So every single C cell has to be eradicated. I didn’t realize when I started on this path that my treatment course is pretty radical. I’ve since come to understand that although I have “garden variety” breast cancer, the “best kind” (that seems like an oxymoron — how can there be a best kind of cancer?), it also was quite aggressive, which poses a greater threat and challenge than I truly understood until recently. So, once again, I’ve been grappling with my old nemesis, mortality.

To assist me on that road, last week my brother had a heart attack! Yes that’s really big news. He had 100% blockage in his ‘widowmaker’ artery, in which case it’s a miracle he survived. He had pain in his left arm playing tennis and it didn’t go away so he drove to the hospital. Sure enough he was in the middle of an attack. They took him immediately to the cath lab for some roto rooter (angioplasty) and 2 stents. The next day, he had 3 strokes (TIAs?), which he hypothesizes resulted from some of the loose plaque from the roto rooter. All the strokes resolved and they sent him home after 2 nights with no restrictions except for what’s necessary because of the incision in the groin from the catheters. He was awake and alert during the angioplasty, which I find incredible. Says he watched the screens as the docs worked.

So he is saying he has experienced a huge paradigm shift. He’s learned the hard way what the small stuff is and he’s not sweating it anymore. I had a really meaningful conversation with him and his son, my nephew, who is also a cancer survivor, about what’s important and about how our close encounters with mortality have impacted our outlooks and perspectives. My nephew was incredibly mature and helpful. He shared how he coped/copes with anxiety, reminding himself even now, years later, when he’s stressed about something, that it really doesn’t matter. And then he can get back to relaxed again. I’m not quite there yet, still in the thick of it all, and so debilitated. It will be a while until I get confidence that recurrence and death is not imminent, if it actually is not imminent. But I had an insight the other night, lying in bed, a bit high from my pot meds, waiting for sleep, trying to meditate. My brother had a heart attack the same week that I have been spiraling down and struggling emotionally about a scary thing I learned about the oncotype (genetics) of my cancer. I started thinking about the fragility of life and ways to die. I’ve long maintained that a heart attack is preferable to cancer death. My mother’s demise weighs heavily on me. She was just a shell of a living person when she finally expired. I don’t want to be emaciated, in pain, suffering, hooked up to machines, slowly deteriorating and miserable, awaiting release. On the other hand, cancer usually gives forewarning and allows the victim to put affairs in order, say goodbye, get ready. The big C is harder on the victim, the heart attack is harder on survivors. It’s so sudden and often unexpected, and goodbyes are often not possible. Same with violent or accidental deaths — car accidents, sports accidents, shootings etc. I am a little envious that my brother’s recovery was so quick and relatively painless. A couple nights in the hospital and he’s home and free to continue to live his life. He’s really lucky he wasn’t out on the high seas on his yacht when it happened. He’s really lucky for many reasons — he got treated before his heart was damaged, the strokes left no lasting damage. He’s blessed. Am I, by extension, cursed? No quick, painless recovery for me. Maybe no recovery at all? Just a slow, painful slide into the beyond. But it also got me thinking about the fragility of life itself at any moment. There are no guarantees ever, on any day. My little brother could have died last week, in a heartbeat, pun intended. I’m not likely to die today, although my odds of dying from my cancer are a lot greater than his odds of dying from another heart attack right now. But neither of us have any guarantees that we will live out the day, or the week, the month or the year. It’s not just my cancer that makes my life fragile. It’s life that makes life fragile. Death just always is but one small accident, or heart attack, away, for everyone. So for me to agonize daily about dying too soon, in a few months or years, from cancer, just ruins this beautiful day that I am alive. I have to accept that each day is an unexpected gift, that I’m already always living on borrowed time, but so are we all, in truth. I could get shot in the grocery store like the 10 people in Boulder last week. I could be in a car accident. I could have a heart attack!

I could choke to death on a bay leaf. That’s not meant to be funny. It actually happened to me a couple of years ago and I’ve been reflecting on that recently, too. We were at Malibu Seafood for dinner with friends on a beautiful summer eve. One of our favorite haunts. Very simply grilled fresh fish, at a picnic table on a patio overlooking the Pacific. They make wonderful Manhattan Clam Chowder, a treat that is very hard to find on the west coast. So I almost always get a bowl. That night, there was an unseen bay leaf hiding on my spoon. Yes, good chefs know that bay leaves must always be removed from the soup before serving but this one got through. And it stuck in my throat. The harder I tried to swallow it, the farther back it moved and the more it got stuck, partially blocking my trachea. I realized there was no way it was going down my esophagus. It was either going to be exhaled or it was going to asphyxiate me. It wasn’t yet fully blocking my airway and I was still able to take a bit of breath so I was able to communicate my problem but no one could help me. I still think they should have called 911 right then, but they didn’t. I knew very clearly that there was a strong possibility that I was going to die right there, on the cold concrete floor of the patio, at Malibu Seafood. And I was OK with that. I wasn’t panicked or completely freaked out. I reflected that I’d had a very good, full life, my affairs were in order, my kids are grown and independent. If I died right then and there it would have been tragic but it would also have been OK. Everyone would go on OK without me, and I would have already lived a full measure. Obviously, I didn’t die. Instead, I let my instincts take over. I got onto my hands and knees, took the deepest breaths I could get in, and forcefully exhaled until the bay leaf caught the wind and sailed free, finding anchor on the floor below me. I kind of “Heimliched” myself. Then I recovered from the adrenaline rush and finished my meal. A very mundane conclusion to a remarkable and profound experience. I still suffer from some PTSD. I have stress over swallowing from time to time, struggle to swallow big pills (taking my vitamins every day requires me to muster quite a bit of courage and I have an odd habit of tossing my head around to get the pills back far enough to swallow. My kids tease me unmercifully about that but they don’t understand the stress associated with swallowing large pills now). This week, I was reminding myself of the calm I felt when faced with what was truly a near death experience. I was ready. I felt strong. I was resigned to whatever fate dealt me at that moment. I’ve been trying to summon that same calm, that same resignation, and that same strength to face whatever my future might hold now. If this cancer isn’t gone, if it recurs and spreads, even more time has passed since the bay leaf and I should be even more ready for my end. It’s easier to face the end when it’s imminent than when it creeps up slowly. The moment the bay leaf is stuck, the moment the heart screams in attack, the moment the bullet hits, the moment the cars crash — the flash of recognition that “time’s up” — when it’s quick and immediate there’s no time to agonize. But agonizing now isn’t going to make death come sooner or later, and it’s not likely to make me more or less ready. I’m ready. I’m always ready. I have to be always ready. We all do. We can never know. So living in fear and trepidation isn’t unique to me or any other cancer patient. But it’s not useful and the cancer doesn’t make the odds of me dying today any greater than the odds of me dying of a heart attack today. Someday soon, it may. It may become clear that I won’t live long enough for my heart to just give out. But the time to let that ruin my day isn’t today. Or tomorrow. I’ll have plenty of time to cry and grieve from the moment my scan says “Bad News” until the moment I exhale my final breath. It may be only days or weeks or months but it will be more than the few seconds or minutes I will get if death takes me by accident, or crime, or heart attack. And I’ll be the lucky one to die first, leaving Rodger behind to grieve and pick up the pieces. If he were to die before me, I’d be devastated and unable to cope. Now that it’s likely that I’ll go first, it’s clear that his suffering will not end when mine will. He’ll be left to grieve and cope alone and he’s likely to really struggle with that (until he finds a new, sexy younger woman). Without me, without Jiminy Cricket on his shoulder, where will he wander? What crazy trouble will he find? What are the odds that he won’t follow me too soon? Viewed through that lens, maybe I’ll be the lucky one to go first.

If you’re reading this, you must be a dedicated reader and/or a really fabulous friend. To stick with me through all my verbosity and sometimes jarring candor. Thank you. I know there’s been a significant attrition in readership. The volume of responses I’ve been receiving has fallen off over time. At first, I got replies to my emails from most of the people on this list. That’s always really welcome and I do very much look forward to hearing back from you. I do cherish your replies very much. It has alleviated my isolation and loneliness big time. But now, that’s significantly diminished. I’m not insulted and I don’t take it personally. I know everyone still cares. And I know that many of you are fortunate enough to be emerging from Covid and getting a life back. I’m thrilled for you and hope to join in on that sooner rather than later. I write these things, to a large degree, for myself — it’s cathartic to express my thoughts and ideas and get them out of my head into ink so I can review and reflect on them. And to leave a little bit of me behind for my family and friends. The irony of this is that my kids won’t read any of this. It’s too close to home for them. Maybe years from now or after I’m gone they’ll read. Or not. But if you are reading this, I want to thank you for sticking with me, hearing me out, caring enough to share my thoughts. I hope what I’m writing is not too depressing, and maybe you find something worth reflecting about. But I do want you to know that I really appreciate your interest, your concern, and your support. Truly. Thank you!

The next time I publish is most likely going to be after April 15, after my last chemo treatment. When I can finally start to recover some strength and better health before entering the next stretch. I just can’t wait to get there…

With love and gratitude,

Jill