Conquering Cancer in the time of Covid

#15 Struggle or Submit?

I Made It! Last Thursday, I crossed the infusion finish line. Hurray! It feels like decades since that first awful night of December 2, but now the last medicines/poisons have passed into my veins and are circulating. Friday was a good day — steroids on board still give me an artificial mania through that first day, and Thursday night I took some sleep aid, so I was rested, and emotionally on a little high. Finishing feels better than I expected. I actually felt like I’ve made it and have won the war. I can’t know if that’s really true, of course, but I’m so ready to feel well again and get on with my life.

But now, my safety net is gone. No more chemo is great, but I’ll be up on the trapeze wires with no net below. To mix several metaphors, we are standing down my army, but we have no proof that the war is over and that all the opposing enemy has been vanquished. Now, it’s just wait and see — the guillotine will be constantly poised over my neck and I’ll be just fearing it will drop at any moment for the rest of my life, I guess. That’s how this goes with cancer. We throw the nuclear bomb at it, but then we withdraw the troops after the last missile explodes without complete assurance that there are no snipers still lurking in the corners. Living with uncertainty is the overarching theme of this story. However, over time, I feel I’ve become more at ease with that, and I’m also very hopeful that as I begin to feel stronger physically, and my body recovers, I’ll get stronger emotionally, too.

Last week I asked my nurse if my prognosis is improved since my body has held up so strongly — i.e., my bloodwork numbers are still great and I’ve avoided some of the more nasty side effects. She said no . But she did say that what is good prognostically is that since my body has been strong, I’ve been able to tolerate full doses, on schedule, for the complete round of treatment. No delays, no reductions in medications. Apparently, that’s a good thing and not always true. The protocol has rationale behind it for the doses and intervals. But 20% of patients getting the first protocol (the AC) and 10% of patients getting the second protocol (the Taxol) require hospitalization at some point along the way. Others need to pause in the middle when complications arise. Just the other day, I heard my Dr. analyzing someone else’s bloodwork and deciding they needed a transfusion that day. That sounded like a pretty big deal. Fortunately, I haven’t had any of those hiccups. What I’ve just endured should be enough. Again, it’s all just crossing fingers and toes, but I have all 20 of them intertwined.

I celebrated my last infusion by bringing flowers and gifts to all my nurses. They were surprised and really touched. It felt very good to express my gratitude and see it received so warmly. It takes a very special kind of person to do this work. Very sick patients, emotionally traumatized, hating to be there, dreading every visit. I can’t imagine being in their shoes doing this every day. Knowing that it won’t always be a success. Knowing that the treatment brings so much distress and discomfort. So, to have nurses who remain positive, optimistic, and cheerful — and are kind, compassionate, delicate, and patient is very meaningful. I’m grateful for their care.

It’s a little (actually a LOT) late in the game for this to have happened, but it did. I had an appointment for a post-chemo nutrition consult and it randomly came up that I take turmeric. The Qunol liquid stuff — I get it at Costco. Started taking it a couple years ago — not even sure why, but I’ve heard turmeric is really good for you. Isn’t that the current wisdom? My friend has been bringing me turmeric broths, too. I haven’t been consistent recently in taking it, which it turns out is a good thing. When our frig died back in January, the turmeric got too warm, and it took me a few weeks or more to replace it. And then, I don’t always remember it every day. It never even occurred to me to list it on my disclosures of all the meds and supplements I take. It’s a food/spice. I see turmeric root in the produce departments with the ginger root. Well, the nutritionist’s eyebrows shot right up as she exclaimed “Not in chemo!” Really? That was the day before my final infusion. And now she’s telling me? How is this even possible? Then she tried to walk it back saying just don’t take it during radiation. Of course, I couldn’t just let that go so I googled curcumin and chemo and sure enough it’s controversial! I first found an NIH study that said it’s great — it’s synergistic with the chemo, actually enhancing it and protects the heart during AC. So, that made me happy and I figured the nutritionist must be wrong. Then I read some more articles which were saying to avoid it — that it counteracts the chemo and prevents it from working. Uh Oh! 20 weeks of chemo squandered for some turmeric??? Of course, I obsessed about it a bit and contacted my oncologist immediately. He set my mind at ease saying that yes, scientific results are uncertain but that in any event the dietary levels I’ve been taking (1000mg/day) would probably result in a net zero effect — neither beneficial nor harmful. I mentioned that since it’s such a ubiquitous, common product, if it was really verboten during chemo, someone should have warned me? In any case, it’s probably (hopefully!) OK. He says the way they know the chemo is working is by looking at all the effects — hair loss, fatigue, nausea, bloodwork, neuropathy, my messed-up fingernails, the tumor shrinking (which I didn’t get to experience because of my botched biopsy) — but clearly my chemo has been working.

I made an appointment to have my port removed! I’m so excited to have it out. My oncologist said I’m strong enough for surgery and it could come out immediately. So, I decided not to wait another 6 weeks until my breast surgery. It’s been bothering me so much for so long. I want it out. My doc referred me to someone good to take it out (I’m NOT going back to the surgeon who punctured my lung putting it in!) and there was an availability in Encino for Friday afternoon. So, I took it. Then UCLA health contacted me to make an appointment. That was confusing. I checked with my Dr. who said he’d sent orders to both UCLA and the Encino place so I could get the earliest availability. Very thoughtful, right? Well, UCLA had an opening for Thursday, at a facility just a few minutes from home. So, I thought, this seems great, let’s do this instead. If anything goes wrong, like it did when it was installed, I’d have Friday to sort it out before the weekend. I made the appointment. Now I had 2 appointments. So, I looked for some advice. First, I googled the doctors and then I asked my oncologist. The UCLA doc looks like he’s 15 years old and he just finished his training in 2018. The Encino Dr. has decades of experience, is the head of his department, Harvard Medical School, teaching experience and my onc says he’s never had a complication with him. You can guess what I decided. I’m a bit nervous about subjecting my body to another trauma so soon and about undergoing sedation right now but I believe that once it’s out, assuming I survive the procedure, my healing will be much improved without the port. It hurts and interrupts my sleep, makes my arm ache…it’s black and blue — doc thinks it’s leaking, and the bruise discoloration is the blood … It’s been making me uncomfortable since November and it’s time for it to go. In 48 hours from right now, I’ll be undergoing ‘explantation’. Hurray!

Recently, my hubby was rather blue. This whole trial has really brought him down, too. His life has also been turned topsy turvy. This isn’t what either of us signed on for. He fully acknowledges that his burden does not compare, and he’s been incredibly supportive, patient, caring and loving. He far surpassed my expectations of how he would cope and help me. But he’s lonely, bored, afraid to lose me, and tired of just hanging out and watching me rot away. He’s very anxious for me to get back to my old self. I’m not sure he can really comprehend how fully depleted I am and how long it will likely take for me to recover. I’m hopeful I’ll bounce back quickly, but I don’t expect to get fully back for months, and I’m aware that I may always be a shadow of my former self. He is just so anxious to get back to where we left off. I really hope I can do it.

In the meantime, the husband has gotten back to where he started. You may recall, as my hair started falling out, he started growing his — his form of solidarity. He grew a full multi-colored (well, mostly gray to be honest) beard. It aged him about 20 years in my estimation and earned him the moniker “Grizzly Bear”. We agreed that he would keep it until I finished chemo, and true to his word, the day after my last torture, Grizzly disappeared and my husband re-emerged. He looks SO much better! Now, if I can just grow some hair of my own back, maybe we can get past this truly ugly period and not fear photos and mirrors so much. It’s not so much vanity as it is the rude recognition of reality every time I see my bald self reflected back. Who is this woman? I used to complain that as I age, I see my mother when I look in the mirror. Now I see Dobby the House Elf. I want my mother back!

And the saga of the RV just won’t end. It’s been in the repair shop since Feb 11, which doesn’t bother us so much since we don’t have much use for it yet, anyway. We are expecting them to finish up pretty soon. But now, on top of everything else, we’ve learned there’s a recall pending! A pretty serious one. There’s something amiss with the rear axle differential, whatever that is. There isn’t enough oil in the casing? I don’t understand any of this, but the short of it is that if it’s not addressed the axle can freeze up and I know that can’t be good. So, the word is out among the owners, and the info is posted on the NHTSA website where I was able to check our VIN to confirm that our rig is included. But Ford doesn’t have the fix in yet, (it’s a Ford issue because the rig has a Ford chassis and engine), and they’re not expecting their dealers to be ready to start repairs until 3rd quarter this year. How messed up is that? There’s a serious potential problem with the axle on a 30,000 lb. chassis but no one can fix it yet? We should just drive it around and take our chances? Not terribly appealing. Fortunately, our repair shop can check it out for us. I was able to send them the info from NHTSA so they know what to look for, and hopefully can add the oil if it’s low. We have to pay for whatever they do, but it’s worth it for some peace of mind pending Ford getting its act together. In the end, it’s a good thing the repairs have taken so long since we can get this handled before we get the baby back.

In other household news, our final (please let it be the final) replacement appliance has been installed. The convection/microwave oven. It was on order for only about 3 months LOL. We’ve missed it. We expected the cabinet was going to have to be altered to accept it, but, more good news, it fit and went in quick and easy. There’s some downside to not having been able to shop for it in person as a couple of its features are not up to my expectations, although I recall we couldn’t find alternatives that would have fit the space. The instructions don’t make total sense and GE hasn’t been able to clarify so I’m not completely clear right now about how it can accommodate larger baking pans. But I’ll fool around with it a bit and see if I can get it to do what I want. As of today, since the pandemic began, we have replaced a kitchen faucet, a sink disposal, hot water heater, refrigerator, microwave, micro/convection oven, and water backup valve. Distractions we didn’t need but, in the end, not such a bad thing. The house is refreshed and rejuvenated.

And now, for some sad news. I heard yesterday that a woman I know just lost her battle with lung cancer. Funeral is tomorrow. She was 73 and fought hard for 4 years. Never gave up, just wanted to live. But she lost. It’s hitting pretty close to home. Of course, as everyone does, I’m considering her details to find all the ways her case is not like mine, to create distance between my future and her grim fate. She was a long-time smoker. She was diagnosed late, already in stage 4/metastatic with significant disease. Still, she was young (in my eyes!) and determined to prevail. One of our friends commented today that “It was time”. I understand that fully but today it felt cold. I felt the same way when my mother died. After such a long, debilitating struggle, loved ones are ready. For them, it’s time. It’s so hard to watch the people we love fade away, especially in pain. Family and friends can become anxious to get the whole thing over with, grieve, and move on to live the rest of their own lives. I’ll never know if for my mother, it was time. She had so much brain damage and cognitive decline from her treatments that she couldn’t communicate at all for many months. But for this woman, I’m afraid it wasn’t time. I hope she was ready but what I’ve heard is that she just wanted to stick around no matter what. I’m so sad. I hope when my time comes, whenever that is and for whatever reason, I feel that for me, it’s time. Until that time comes though, that question can’t be answered. She and I never had a direct relationship, but we have many good friends in common so we were aware of each other’s struggles and texted recently from time to time just to exchange healing wishes. Recently, we had an interesting connection that reminded me once again there’s more to the universe than meets the eye. I hadn’t heard from her in quite a while — she hadn’t responded to my last texts — which worried me because I feared maybe she was really failing. (She was). So, one recent Friday evening I asked a friend about her, and then later that evening I said a misheberach for her at Shabbat services (a prayer of healing for the sick that we dedicate to specific people). No more than 5 minutes later, she texted me, just to touch base. Coincidence? Maybe. I prefer to think Connection. And I hope she’s connecting with me now, from wherever she is, maybe sending some healing my way. I’m sending her my hopes for her peace and rest. May she be in a better place.

A little philosophical reflection to end with now — as usual. My book club’s last book was Homeland Elegies by Ayad Akhtar. (Not Hillbilly Elegies which was also good, but I think Homeland Elegies is better). I really enjoyed it and do recommend it. It’s a novel but it reads like a memoir, about the immigrant experience in the US, specifically the Pakistani-American experience, especially post 9/11. As I listened to the book, (which I also highly recommend since the author is the reader and he provides an excellent, very authentic performance) I was considering the dualities of Submission and Struggle, Islam and Judaism. Islam, in Arabic, means submission, (in the religious context, Submission to the will of G-d), and Israel means struggle. Jews are the “People of Israel”. The duality feels relevant to me now. On the one hand, I’m struggling to come to terms with cancer and all it forebodes. I want to fight against it, win the battles and ultimately the war. I’m struggling emotionally and psychologically as so much of my writings expose. On the other hand, I’m trying to let myself just submit and let my fate take me where it leads. I don’t have control and I have to accept what comes. So, the answer to my struggles is to submit. Is Islam the counterpoint to Judaism? Insha’Allah? They both seem valid perspectives. I don’t know enough about Islam to evaluate whether or not, as a religion it’s my answer. But conceptually, I’m thinking about submission and struggle, and that evokes religion to me. At some point, everyone submits. No one has ever prevailed in the ultimate struggle. So, in the end, we all submit to our fates. The question is how we travel to get there. Do we travel in submission, allowing our lives to wash over and through us, accepting everything as it unfolds? Or do we travel in struggle, constantly wrestling against whatever unseen or perceived enemy pushes us toward the end? Is there a middle ground? Dualities all have middle grounds, as levers/teeter totters have fulcrums. Perhaps it’s to be vigilant, aware, positively inclined and actively providing ourselves with our best odds. But always to be at peace with whatever comes. All that leads also to the question of free will vs. fate? How much of our futures can we/do we control? Is anything pre-ordained? Is everything pre-ordained? It’s easier to be fatalistic. There’s less responsibility in it. We wouldn’t have to concern ourselves with making the right decisions if we really never had any choice in the first place. But abdicating all opportunity to impact our futures seems terribly sad and irresponsible. If our actions have no consequences, then nothing matters. But not everything can be influenced by our actions, either. I don’t have any answers today. I’m still engaged in this struggle to submit. I’ve heard of Jewish Buddhists — I’ve heard them called JewBu’s. Am I a Jewish Muslim? A JewMu?

On that note, Shalom, Salaam, Peace be with us all.

Love,

Jill