Conquering Cancer in the time of Covid
#16 Post-Chemo Roller Coaster Ups and Downs
May 26, 2021
Dearest friends and family,
It’s been a while since I’ve written because this roller coaster just hasn’t slowed down. My progress and news continue to have ups and downs, and unwelcome surprises. I haven’t known exactly what I wanted to say, and how to say it. Now that I’m ready, it turns out I had a lot to say. This is a long update….
Today is my birthday. I’m 66. One more 6 and there’s the sign of the devil, right? 666? Seems fitting this year since Lucifer has definitely been meddling in my life. There’s only one thing I want for this birthday. Another birthday! I’m sending that unapologetically into the universe. What I want today is to still be happily and healthily writing on May 26, 2022.
Some Good News first:
Life does look brighter on this other side of chemo hell. I’m starting to get some energy and strength back. Food is beginning to taste the way it should, and my appetite is returning, slowly and intermittently. I was hoping to gain back some weight quickly, but I find I’m still struggling to put even a few pounds back on. This is a problem I’ve wished for, for years, but now that it’s here, it actually is a problem. Normal feeling is slowly returning in my hands and feet. Acupuncture has helped that along. I highly recommend it and I have an excellent acupuncturist if anyone wants a referral. On the hair front, results are mixed. Six weeks post chemo and I’m still shedding. I just lost my very last eyelash last night, and I can count the few eyebrows still literally hanging in there on one hand. I’m sure they’re all on their last legs too. No signs of regrowth there yet. I can attest that this is most definitely a weird look, and no amount of makeup can conceal it. I had a few long strands of hair at the nape of my neck that lasted all through chemo and they’ve now disappeared too, along with hair in nether regions that hung out as long as it could but just now is finally giving up the fight. Happily, I have peach fuzz all over my head. Doctor says it’s called lanugo — the same fine fuzz that babies are born with or develop early in life. Lanugo isn’t real hair, but it’s a start and it’s promising. And in just the past few days, I’m starting to notice tiny little sprigs of what does look like real hair on the top of my head, sprouting up under the fuzz. My hair is growing back in an odd pattern, though, that was a bit scary at first. It’s thinner on top and thicker around the sides, so it looks a bit like male pattern baldness, a really frightening scenario. Both my grandfather and father were bald in this fashion and I truly feared that might be my fate. Thankfully, doctor says this regrowth pattern is also normal, and eventually I’ll have hair all over my head again, not just on the sides. Phew. I’m really looking forward to sporting a crew cut, hopefully within the next month or two, and feeling brave and dignified enough to venture into public without a head covering, especially as the weather warms up.
My port is out! One week after I finished chemo, I had the removal procedure. After the debacle with the punctured lung when it was installed, I was very nervous and my blood pressure was in the stratosphere. But it came out without a hitch, the scar is looking very clean, and I am absolutely thrilled to be rid of it. I was awake and had very interesting conversation with the doctor and nurses during the procedure. The port is now my “souvenir” and I know why it hurt me so much and affected my arm. It was way too big for me! Apparently, they come in different sizes and the one I had was way too big. What a botched job the implant was.
Some Difficult Choices:
I’m in the middle of major, very confusing decisions about surgery. Originally, when I first met with my breast surgeon in late January, I came away with the understanding that my only likely option was going to be mastectomy (MX). I needed to decide whether to do single or double, and what to do about reconstruction. I did hours of research, talked to more than one plastic surgeon and many other breast cancer warriors, engaged in deep soul searching about it, and finally made my decision to remove both offenders and have no reconstruction — just remain flat with something called an aesthetic flat closure. I bought a special mastectomy robe to wear during recovery. Eventually, I’d have some beautiful tattoo work on my chest to hide the scars and make a strong statement about survival. If you google Mastectomy Tattoos, you’ll be amazed at the variety and beauty of what women are doing. There’s a talented tattoo artist not too far away in Santa Clarita who does this. But then, after my follow-up MRI at the end of chemo, which thankfully showed no evidence of any residual cancer in my breast — Great News! — at our second meeting, the surgeon counseled me that I don’t need any further breast surgery at all! (except for sentinel node biopsy). My oncologist and radiologist concur. That is indeed enticing, if I can live with the scanxiety of years of future mammograms and MRIs that will be required, and the fear of another cancer or recurrence. No need for the trauma of major surgery right now, while I’m still depleted and recovering from the tortures of chemo. Apparently, the latest studies all conclude that there’s no survival benefit from MX over lumpectomy and there’s even a study out of Sweden that was recently published in JAMA that concluded that lumpectomy was the better choice. That study wasn’t up to the gold standard of controlled randomized trials but it’s still more evidence that mastectomy isn’t necessarily the only way to beat this monster. To sweeten the deal, the radiologist says that if I elect mastectomy, I’ll need 6 weeks of radiation. But if I do no further surgery, I’ll only need 4 weeks. Seems counter-intuitive, right? The logic is that after MX the skin is thinner, so the radiation doses are smaller but require more sessions. So, as of today, getting down to the wire on June 1, I’m leaning heavily toward keeping my killer boobs attached at least for now. My surgeon assures me that it’s not an irrevocable decision and at a later date, if I change my mind, I will have that option. I still need surgery to remove and check my sentinel lymph nodes but I expect that to be far less challenging than double amputation. All fingers still crossed for no disease in the nodes!
And now, Some Bad News:
Since my journey just doesn’t seem to be easy or clear cut at any juncture, there’s yet another wrinkle. My very first MRI, back in November, found some nodules in my lungs. The Pet Scan determined them not to be malignant and suggested they might be from a mycobacterium. My oncologist hypothesized Valley Fever from all my earlier years of exercising in the San Fernando Valley. We put those questions aside as we started chemo. But after starting Taxol, the second chemo regimen, I developed a bothersome cough. Intermittent, mostly dry, but occasionally productive. I reported on it weekly, and it got progressively worse. A couple of times I coughed so hard I became lightheaded. But my progress and overall health were still steady and strong. Then, as I mentioned, my surgeon wanted a follow up MRI after I finished chemo and it indicated that the nodules had increased in size. Now we could no longer ignore them. Before anything else happened, we had to confirm that they were still benign. Despite strong reassurance and confidence from my surgeon and oncologist that they would be benign, my old consigliere, anxiety, returned with a vengeance. My first couple of weeks post-chemo suddenly turned from celebratory to nail biting. I kept telling myself that there’s no way a new cancer or even an old one could have thrived and grown during 20 weeks of the strongest chemo but there was always that nagging doubt in the back of my head. We took a few days to go north to Berkeley for a much-needed fix of family and grandbaby. And then, off I went for a second round of glow-in-the-dark, nuclear testing. Pet/CT scan number 2. Result — mixed. Good News: no evidence of any cancer anywhere in my body. Hurray! The nodules are benign and there’s no evidence of breast cancer. Bad News: there are more nodules and they did grow in size. My lungs were/are heavily inflamed, which I could have told anyone from how much they were hurting by that time, and how much I was coughing. So…what to do? Add more experts to my medical team of course — off I went to a Pulmonologist. He ordered a bazillion tests. It felt like they took enough blood in those collection tubes for a full pint donation. And I had to provide sputum samples, which is not easy for me. To help me along on that unpleasant adventure, I had an interesting in-office treatment. They gave me a nebulizer for 10 minutes while a machine pounded on my chest for 20 minutes. I was strapped into a vest that resembles a life jacket. Then it inflated and “percussed” my chest at 60 pounds of pressure. The thing had me vibrating so severely I was getting dizzy. I tried closing my eyes, opening my eyes, it didn’t matter, I was like a bowl of jello — all jiggly. It was supposed to loosen the goop in my chest so I could cough it out. It didn’t. I have to turn myself upside down into a yoga shoulder stand and plow position to get gravity to help me clear my chest. Fortunately, the laws of physics work in my favor for this. It took a few days for me to get enough stuff collected for the two rounds of samples the doctor ordered, but eventually, I filled the little sterile cups with what the labs needed. I won’t gross you out with any more disgusting details. And then all the test results starting coming in. It all gets posted immediately to online portals these days — every time a new result comes in, I receive email and text notifications and I can access the reports myself. The blood work was all normal except for one test that confirmed that I have raging inflammation. Duh! But the cultures are growing mycobacterium. I’d never heard of it before, have you? Apparently, it’s a ubiquitous pathogen — in the air, soil, all around us. It’s very rare to get an infection — usually it happens to people with immunocompromised conditions like HIV. Not healthy people like me! But apparently, I’ve had it for quite some time and didn’t know. It grows slowly, which I’m hypothesizing is why chemo didn’t kill it. I’m still learning about it, so I honestly don’t have all the info and details yet. One or more strains cause TB. We don’t think I have TB (my blood test for TB was negative), although the cultures need more time for the exact strain to be determined to definitively rule it out. The worst part of all this is that the treatment for mycobacterium is really “rough” to quote 2 doctors. It’s an antibiotic cocktail taken for 1–2 years! Yes, years! And it’s really hard on the body, as you can imagine. My oncologist says nothing is as bad as chemo, so I hope comparatively this won’t be as hard. But I’m honestly devastated that just as I finished the hardest chemo, now I’m facing years of potentially debilitating antibiotics. I know someone who just finished this treatment after 16 months. It was a very hard journey for him. His case is a bit different from mine. His infection was in his hand and wasn’t diagnosed for a long time, during which it progressed quite a bit and he almost lost his hand. But now, he’s done and doing pretty well. So, he has found his rainbow at the end of his tunnel. I’m now staring down a new, long, dark tunnel of my own.
I have appointments this week with an infectious disease specialist and the pulmonologist again to get more information and consult about what to do. Happy Birthday to me. As a gift from the universe, I get to face another serious disease with unpleasant treatment. So right now, I really don’t know when or if I’m ever going to get my healthy life back, and what it might look and feel like between now and then. I do feel much better now than I did a few weeks ago. I’m guessing that as my immune system is recovering from chemo, it’s holding the myco better at bay. My lungs don’t hurt nearly as much, and my cough isn’t as bad. But I’m not miraculously cured, and I will have to face the piper soon on this one. Yuck. My internist (who was the first and only person so far to use the beautiful word “remission”) says just to take the whole thing one step at a time. Finish with my cancer treatments and then move on to treat the myco. I’m trying. Oddly, and interestingly, now that I have this new lung concern, I’m less worried about the cancer. I have a new threat to piss me off. If it’s not one devil, it’s another.
My sister and I both often look for the “why” in the “what happens”. We try to believe that the universe is benevolent and that bad things happen for good reasons. So, we both came up with the same hypothesis at the same time for why this is happening. It feels almost ridiculous to say and even more ridiculous to write. But we both thought, well, maybe I had to get breast cancer so that I could have a Pet/CT scan, so that I could learn that I have this myco infection, so that I can get it treated before it does serious damage. How’s that for a creative way to spin a death sentence into a life saver? It’s the stuff of sci-fi novels but it gets me through the day.
Motorhome update:
On the more mundane front, the motorhome is finally back in the driveway after 2 ½ months at the repair shop. They did a fabulous job fixing it up. It looks terrific and it’s actually stronger now, after steel reinforcing at the impact site, than it was before. But don’t think that’s the simple, happy ending to this story. It’s my story after all. There are no simple happy endings. Remember that while it was in the shop we learned about a recall? It’s a Ford recall because it’s built on a Ford chassis and there’s a problem with the rear axle differential or something like that (I know exactly nothing about automotive stuff). The repair shop did an initial safety check for us and added 2 GALLONS of oil to the axle. The day the repair expert was here to walk us through all the work they did we received the notice from Ford in the mail. It states that we have to take it to a Ford shop for them to replace the rear axle stuff, and they’ll reimburse us for whatever interim repairs we’ve made. Fair enough. We started calling Ford dealers to make the appointment. Well, there are NO Ford dealers anywhere near here who can do this work. They can’t handle the size and weight of the rig. We called the helpline number at Ford that’s on the recall letter. They said they’d check with some place we hadn’t heard of. Then they called us back to say that place couldn’t do it — and that’s all the help they offered!! Hubby has taken this assignment on by himself and to his credit, he’s been relentless. He knows that if we don’t get an appointment somewhere soon, it could be months before we can get it in anywhere. And we really don’t want to have to take it back to Vegas to the dealer. Finally, this morning he located a shop in Santa Fe Springs that can do the work in a few weeks. What a headache! Now we just have to figure out how to get it there and how to get home after. Another stupid annoyance hopefully solved.
A short update on the Hubby:
2 weeks ago, I drove south to visit with our daughter and her daughters. Both kids had birthdays that week and I wanted to give them birthday hugs in person. Hubby stayed home because he was playing in a golf tournament that weekend. My energizer bunny never just sits around and relaxes, so that Thursday he took off on an epic bike ride. I always worry a bit about him when he’s out on his bike because what he loves best about it is the speed. He gets his workout climbing the mountains and then just flies down as fast as he can. He gets up to 40mph on the steepest downhills. We were in contact while he was out, touching base every hour or so. Around 3pm, he told me he was near Malibou Lake and was heading towards home, and he promised to let me know once he had safely returned. Well, 3:30 came and went, as did 3:45 — eventually it was 4:00, 4:15. I was getting really concerned, texting and calling his phone repeatedly to no avail. Finally, close to 4:30 he answered the phone and told me he was in an ambulance. I thought he was kidding but it was no joke at all. He put the EMT on the phone, who confirmed they were on the way to the hospital, but that my hubs was OK. OK!? He was incredibly lucky. He crashed through the rear windshield of a parked car! Head first. Without a doubt, his helmet saved his life. He has no memory whatsoever of how it happened. One minute he was cruising along, and the next thing he remembers he was in the street surrounded by EMT, fire dept, and sheriffs, getting strapped into a backboard and loaded into an ambulance. The ER treated him for multiple abrasions and contusions, took a bunch of glass out of his face, did a head CT to check on his concussion, and then released him to an Uber. Amazing! No broken bones, no serious injuries (aside from another concussion). His face was badly cut up and seriously black and blue, and he has an assortment of other scrapes and bruises on the rest of his body. Our 4-year-old said he looked like a zombie. Incredibly, his bike was unscathed. He picked it up at the sheriff’s department the next day. My guardian angel, best sister ever, spent the night at our house to keep an eye on him since I couldn’t. I am so grateful for her always. I was so angry and so relieved at the same time. I told him that I’m fighting so hard to stay alive — he cannot be reckless with his own life. He may be a cat, with 9 lives, but those of you who have known us a while know he’s already used up several. I love him so much and need him 100%. I cannot continue on this journey alone. I need my crazy soul mate at my side. The pièce de resistance in all this is that he and his partner scored both 1st low gross and 1st low net that weekend in the golf tournament. Even bruised and battered, he’s always a competitor.
On the really brighter side:
Now that I’m able to eat a (small) normal meal and have 2 Moderna life savers onboard, we are starting to socialize again. I’m nowhere near ready to go to a restaurant yet. I don’t fully trust my mRna since I got it during chemo and what I’m reading is that it’s likely therefore that the efficacy is not as strong as the published 95%. I’m anxious to get a booster shot as soon as they’re available. But it’s been truly wonderful to have the companionship of good friends in person again. Emerging from isolation and loneliness is really strong medicine. But I must say it’s also been a bit weird. Being less than 6 feet away from someone who is not immediate family, without masks, requires an adjustment. I imagine there must be some degree of similarity to inmates emerging from solitary confinement or even just being released from prison into the real world. I fully acknowledge the hyperbole in that, but I do believe I’m not alone in discovering that re-entry after Covid isn’t as simple as just walking out the door back into the past. Re-entry after “Cancer during Covid” carries an even heavier weight. At each encounter we ask, ‘To hug or not to hug’? I’ve received some bear hugs from people who really love me and have missed me, and they’ve brought me close to tears. Shall we dine on the patio or indoors? It’s still gets cool here in the evenings, even with the patio heaters, so I’ve been opting for the dining room. Indoor dining — Très risqué! And, on a very personal level, it’s the first time I’m venturing out among people who matter to me without my usual face and hair. I’ve never considered myself an exceptionally vain woman, but I’m not yet ready to bare my head in public. My headscarves, even the most beautiful and exotic Hermès from my kids, still shout “Cancer Patient”. No amount of makeup removes that. I’m very self-conscious about it. My friends, the sweethearts that they are, are all telling me that I look great. Maybe they expected death warmed over and simply exceeding expectations translates to looking great? I definitely do not look great, but I do look alive. These get togethers are really rejuvenating, invigorating, and perhaps most importantly, distracting. Inevitably, everyone wants an update on me, but once I’m done with the “Reiss Report” we have conversations about all sorts of other things — and I can stop perseverating on my fears and troubles and just live in that normal moment. What a treasure and refresher that has been.
The Very Best News:
And now, the very best news of all — I’ve saved it for last. Our son, daughter-in-law, and 17-month-old grandbaby are moving to LA! For real! To stay! And Soon!! We are beyond thrilled. This is the very best silver lining of Covid and Cancer yet. They’ve been in the Bay area since they were freshmen at Cal and bought their first home in Berkeley 5 years ago. They love it and have really embraced pride of ownership. We never thought they’d relocate south. We were delighted when they built a beautiful brand-new guest house just a year ago, so our Berkeley digs were really comfortable. But Covid hit when the baby was only 3 months old and suddenly, they were stranded up there, without any family support, with a tiny infant. They not only wanted the help that grandparents lovingly provide, they also wanted to share their ecstasy and pride as new parents with us. But all we had was zoom and facetime. We did take every advantage of that but it’s not the same as handing a crying baby to Nana and Poppi so Mommy and Daddy can take a nap. And then, of course, I got cancer and the reality of the fragility of life hit home very personally for them. My mother and father-in-law both died when our son was only 3–4 years old. He has no memory of them. And he has watched us spoil our daughter’s kids over the past 8 years, showering them with the kind of unconditional love and attention that only comes from the older generation. He sees how much our daughter’s girls love us and he wants that for his baby. He’s a founding partner, the CTO, in his start-up, Hummingbird, which is thriving and growing beautifully, (can you feel my pride here? They just won an award for best new start up for risk and compliance management) and early in Covid they, like many other businesses, relinquished their office space in downtown SF and went fully remote. He has employees all over the country/world, some of whom he’s never even met in person. Our D-i-L worked at a satellite office of an LA law firm, which also shuttered, so she’s also free to relocate and continue to work remotely. And her parents live here in LA too. So, they made the decision, completed much of the planning, and then told us the great news. It’s an opportune time to sell a house as everyone must know and Berkeley is an even hotter seller’s market than LA. So that will work heavily in their favor. And it’s a great time to rent, too, so they’ve leased a big, beautiful penthouse apartment to occupy while they take their time finding just the right new house here in the southland. In a few short weeks, we will be able to drive only 45 minutes or so, rather than 6 hours, to visit them, and believe me we will do so regularly. I’m already excited for Shabbat dinners, Sunday brunches, and Saturday night babysitting gigs while they go out on the town. We will finally have need of a car seat. And someday we will be the biggest fans at peewee soccer games. “When life gives you lemons, make lemonade. Always look for a silver lining.” Clichés that often don’t resonate, but in this case, my silver lining, my lemonade, is moving right here next month. I’m truly over the moon.
A final message to all my girlfriends:
Ladies, according to statistics, one in every eight of us who live to be 80 years old will get breast cancer. That’s 12.5%. A relatively big number. My genetics panel is in and I have not a single genetic predisposition for cancer. My odds were no worse than everyone else. I’m just the unlucky one of us who drew the short straw and took the bullet for 7 of you. But I don’t know who is among those 7. My message of encouragement to all of you is this: Check Your Boobs! Mine tried to kill me. 3D Mammography and ultrasound just 6 months prior didn’t find the tumor. I found it myself, and it was so insignificant that neither hubby nor I was certain we were feeling anything at all. Thank heaven I didn’t ignore it, even in the middle of the pandemic. So, check your breasts regularly — get to know their shape and contours well so that if anything changes, you will know. Then don’t waste a minute getting help. Let’s all grow older together…
With love and gratitude as always,
Jill
