Conquering Cancer in the Time of Covid

Update #17 The Quiet Time Between

June update

Part 1 — Health first, always:

It’s been a month since my last update. I’ve been keeping my personal journal but haven’t had the impetus or heart for public sharing. It’s been a quiet time, between stages of treatment. Ten weeks has passed since my last chemo infusion and I’m beginning to feel more and more myself again as the time passes. A very short, uneven, downy, unkempt crew cut now adorns my head. Looks like salt and pepper will be the new color, although it’s still too early to tell for sure. Our son suggests I should even it out with clippers, but I can’t bring myself to cut a single strand of this coveted, longed for growth. He and I are sporting twin hairdos, but his isn’t as ragged. The look emphasizes our genetic familiarity — it’s quite obvious that he is my son these days. My body is no longer bald either. Full, bushy eyebrows protect my eyes again, and my baby eyelashes are long enough to enhance with just the slightest bit of mascara. Tweezers are once more a routine necessity — too bad — I was hopeful those hairs might actually disappear, but as a sign of renewed vitality and life they are welcome. The peripheral neuropathy/numbness and tingling in my hands and feet is subsiding and resolving. I’m gratefully confident it won’t be permanent. Appetite and weight gain are among the last challenges in recovery. I’m stable, still hovering around 110 pounds, which is not unhealthy — my body actually looks pretty good at this size — but further loss will put me at an underweight BMI. The struggle in gaining weight is that my appetite has not fully returned, and I still suffer some occasional queasiness. The oncologist reassures me this is normal. It takes quite some time for a body to heal fully from all the toxins. He repeated again this week how “proud” (I find that an unusual word in these circumstances) he is of me for how well I tolerated the strongest chemo. The compliment is welcome although perhaps undeserved. I didn’t have direct, conscious control over my bone marrow, liver, and kidneys. But I do think that my long-term healthy living habits created the strength my body needed. I suppose I can be proud of that. I think I’ve lost not only fat, but muscle mass, which won’t return until after I get some more weight bearing exercise under my belt. At some point, I should probably start visiting the gym, maybe get a trainer, do some pilates and yoga, but I’m not there yet. I’m consistent with my cardio — mostly walking the hills still, but also starting to get back on my bike for longer, beautiful, exhilarating rides. I’m a bit of a fraidy cat though — I’m hesitant to get on the bike alone. What if I get another flat tire? Or crash through the windshield of a parked car? LOL! I prefer to ride when Rodger can accompany me for moral support. It will be important for me to keep this up during radiation. Paradoxically, the more exercise you get during treatment, the less fatigue sets in.

Shortly after chemo ended, although my body was recovering, I acknowledged that my emotional health was declining. I’ve learned this isn’t at all unusual. In the throes of treatment, it takes all one’s energy just to get through the day, the week, the next infusion. All efforts are focused on tolerating the side effects, slogging through the trenches, staying alive. Once treatment ends, focus shifts. After the initial euphoria of not having to do that anymore fades, what’s next? What will the future hold? How will my body be permanently impaired? Is it safe to start thinking and planning long-term? And…omg, I’ve really had cancer! The shock is gone and the challenge of the longer reality sets in. I became depressed, unable to fully feel real joy and relief, unable to sleep through the night without help. And that created some cognitive dissonance, too. I knew I should be relieved and joyful. I survived the strongest chemo and did well. My cancer is gone, at least for now. Objectively there was much to celebrate. But subjectively, I was really down in the dumps. So, I’ve gotten some help. I’ve now added psych helpers to my medical team. Talk therapy and happy pill therapy. The first happy pills I tried had crazy strong side effects and after 2 days I had to quit. But we’ve since dialed it back to just a tiny dose, like a grain of sand, twice a day which I’m tolerating fairly well. It takes time, and a dialed-up dose I think, to start to work, but I’m already feeling some relief. Maybe it’s a placebo effect just knowing I have some meds onboard and maybe it’s just that with time I’m improving but either way it’s welcome. I’m hoping this isn’t necessary forever, and that as I get stronger and farther away from treatment with no recurrences, spread, or new cancer, I’ll be able to wean off them. But for now, I’m allowing myself to benefit unapologetically from the wonders of modern medicine. “Mother’s Little Helper” — “One pill makes you larger. One pill makes you small”. These aren’t the “Ones that mother gives you don’t do anything at all”.

The sentinel node biopsy surgery on June 1 went very smoothly and I’m healing really well. I absolutely adore my surgeon. She’s brainy, beautiful, and has the most compassionate and patient heart I could ask for. I wonder if this is a girl crush — Lol! If so, that makes me a cougar. She can’t be much, if any, older than my kids. The scar under my arm will be very small and eventually hardly noticeable, so she obviously has great surgical hands, too. But the best news, perhaps second only to the early news that the cancer had not yet metastasized, was that all 4 nodes were clear. No evidence of cancer in any of them! It didn’t get into my lymphatic system, which I’m likening to my body’s interstate highway. We cut it off on a local road. This is great news and the first thing to give me some real confidence that I might truly get well, possibly for a long time. My spirits got a needed lifted from that news. I can breathe a little bit easier, sleep a little better, and start making plans for a future. I’m profoundly grateful.

On the respiratory front, my lungs are feeling much better, thank the heavens. The Breo inhaler is really helping. It feels like the inflammation is gone — it no longer hurts to breathe. My cough has resolved, too. I’m still “clearing my throat” frequently, to use a euphemism and not gross you out, but that’s easier, too. My pulmonologist has no interest at all in treating this, as long as my condition is stable. He reassured me that it won’t progress to COPD and that people can generally just live with it. The immune system keeps it in check and if there are flare ups, we can deal with them. The infectious disease specialist is more amenable to trying treatment, although she says that there’s no way to even know if it actually works. You just take the meds for 18–24 months, then stop and hope you feel better. Crazy! I hope they can come to some concurrence on this soon but in any case, I’m not doing anything until after I recover from radiation, unless there’s an emergency. I’m creeped out at the thought of just living with an infection forever, but I keep reminding myself that I had this a long time before I knew it and I felt just fine. It didn’t hold me back at all. So, if I can get back to relatively asymptomatic and it’s not going to progress to be deleterious to my overall health, maybe I can come to terms with just living with a chronic problem. I keep reminding myself that lots of people do — I have friends who have diabetes, fibromyalgia, MS, asthma etc. and they go about their lives just fine. Maybe I can, too.

Radiation starts tomorrow — Monday. The final leg in the formal treatment lineup. At the last minute, I had to find a new radiology oncologist. I’ve been consulting and planning with a doctor in Burbank but right after my surgery, at the last minute, her office called to let me know she’s moving to Houston. That was annoying and disconcerting. But once again, the universe was conspiring in good ways. My med onc and surgeon both recommended me to another guy, in Sherman Oaks, and I liked him even better than the original doc. He’s more conveniently located. And his Tomotherapy machine does not require me to hold my breath during treatments. It will move around me to avoid my lungs and heart. So, I think in the long run, this is for the best. I’ve had my two planning sessions where they built a mold for my body, and I received my first tattoos. I now have 3 new tiny dots across my abdomen. They look like fine point sharpie dots and will just blend in with my freckles. My understanding is that they are landmarks to position me exactly/precisely for each treatment. I have to go every day, Mon-Fri, for the next 22 days. At the end of July, my breast should be literally glowing in the dark. If you see me, you should probably keep your distance. Like Superman and Krypton. Maybe I will get one of the nuclear radiation triangular symbols for my T-shirt. Seriously though, I’m told that compared to chemo this will be “a walk in the park”. Nevertheless, I can expect fatigue and skin burns. There’s a whole list of antioxidant vitamins to avoid. Radiation is an oxidant, so we don’t want to counteract it. I have special creams to moisturize several times a day — calendula and Aquaphor — Dove soap for sensitive skin to wash gently with warm, not hot, water — and the recommendation is to wear loose, soft cotton T-shirts. It’s another frightening proposition but not nearly as overwhelming or terrifying as chemo was. And it’s only 4–5 weeks, rather than 5 months. So, it will all be over soon. Hurray!

Part 2 — Living again:

I’ve been happily out on the golf course!… with hubby in tow for support and company. It felt really good. But the last time we played it was very hot and my body just couldn’t take it, so we quit after 9 holes. A chip-in from behind the sand on the last hole ended the day on a high note. I’m really looking forward to getting back out with the ladies again but that may not happen for a while yet. My radiation treatments interfere with Tuesday T -times through the end of July and the summer months are beastly hot in Tarzana. So, I might have to wait until cooler fall days.

I had the great pleasure recently to be invited to a couple of amazing parties and after so many months of illness and sequestration they were both incredibly fun and strange at the same time. One of our new neighbors turned 40 and made herself a ladies’ night party for the Monte Nido locals. Many of my old-time baby boomer sisters were there as well as a whole new batch of 30/40 something newbies. For entertainment, aside from amazing food, there were a piercing artist, a tattoo artist (the real deal, not temporaries) and a psychic reader. What a hoot! All three were busy the entire evening as women lined up to literally change themselves. I participated happily as a spectator. I’ve been poked, prodded, cut, and stitched enough recently. And I wasn’t confident enough to ask a psychic what my future might hold. It was great fun just to be out for an evening, socializing. But it was also weird. No one was wearing masks. The doors were all open but every time I found myself inside for a while, I became claustrophobic and headed for the safety of the open-air patio. Re-entry into the post-covid world is not as simple as just walking out the door into the past. At least not for me. I don’t yet have full confidence in my vaccine, although I was able to get an antibody test and I do have them! But that’s all it says. There’s no information on quantity or degree of protection. I’ll be the first to line up for a booster shot as soon as they’re offered. And because of my lung issue, I’m also aware that Covid could be seriously harmful to me, despite antibodies. So, I’m not quite ready for full re-integration. Outdoors with some social distance and indoors with masks will be my style for a while.

Two weeks later, our next-door neighbor threw a surprise party for her hubby’s 70th. Another amazing bash. She had a 5-piece band, a dance floor on the lawn, and a paella caterer. Glow in the dark necklaces and bracelets lit up the night and our dance moves. Again, no masks. It was the first time in a long time that I’d seen many of my neighborhood buddies. I’m very comfortable and secure with this group of wonderful, supportive friends, so for the first time post chemo, I sported a bare head. I balanced it with lots of makeup and big jewelry to draw everyone’s eye away from the sprouts on my pate. The reception I got from my friends was overwhelming, reassuring, and amazingly heartwarming. People genuinely thought I looked well, and good. Many tight, loving bear hugs filled me up. Several friends thanked me for this blog. It hasn’t been easy for them to read (something I honestly hadn’t considered as I poured my heart onto these pages), but they found it enlightening, provocative, and interesting. We ate, we danced, we celebrated life, freedom, vaccines, victory over the scourge, survival. To a person, everyone was acutely aware of how wonderful it was to be out again, and how incredibly lucky we are to be breathing, and here. There was a palpable, collective joy.

What surprised and disconcerted me quite a bit, was how quickly and easily everyone seems to have fallen back into old rituals and routines. There was no hesitancy about hugging and kissing. Many people are very comfortable again with tight, small personal space. Honestly, this made me uncomfortable — very uncomfortable. I don’t have the same confidence as healthy people about the efficacy of my vaccines, so I am not ready for close talking and cheek kisses. It was not easy for me to keep the social distance I still need. And I didn’t know how to communicate that to my friends without being rude. At one point, I physically held a friend off with an outstretched arm because he wanted to talk so close I could feel his breath. So, for quite a time, I just hung out on the edges, alone, watching the festivities. I wasn’t lonely. It was still very good to be there. But I backed off from the groups, the dance floor, and the conversations because I couldn’t hold my space. I think this will be my challenge and dilemma for a while — maybe until I get my booster shot? Or Covid cases truly disappear. In the meantime, dear friends, please understand that my physical distance does not reflect any lack of love, desire for intimacy in conversation, or rejection of you. And I ask you please to understand and respect my continued need for physical space during this transition time. I’m still in treatment, depleted, immune system recovering, and I have a long-term lung infection which puts me at greater risk. So, let’s visit, together but apart.

Part 3 — The ongoing saga of the motorhome:

The recall is still an issue. We had an appointment to get the repairs done but Ford has not yet shipped the parts. I imagine this problem is actually affecting huge numbers of vehicles that were built on this chassis, not just Newmar motorhomes. So, with manufacturing and material supply chains rather slow right now in the world, it may be quite some time until the fix is in.

In the meantime, we finally actually drove the motorhome out of the driveway! It was completely intimidating but we did it! First, we took it to the Calabasas Car Care guys. Shout out to that place — we have been taking our cars there for service and repairs since they opened maybe 15 years ago and they are absolutely fantastic. A godsend. Honest. Professional. Friendly. Fair prices. I HIGHLY recommend John and Tom. We wanted to get the tire pressures checked and they got it done — no charge. While we were there, Tom was ogling the thing longingly and the social media person took a photo to highlight that they can work on even these vehicles. Then we gassed it up at the Shell station. Getting gas is an adventure of its own. First you have to be sure the overhang is tall enough to fit us! The Mobil station at Las Virgenes and the local Arco stations are too low. We need 13’ of clearance. Then pulling it around the pumps is a logistical challenge. It took about $125 of gas to fill half the tank! Regular 87 octane. Then we brought it back home, navigated the bridges again and back up the driveway to pack it up — food, clothing, odds and ends that were still in the garage from after the wreck. The next morning, off we went, south to Encinitas for some glamping in our daughter’s driveway. I drove all the way to Pendleton and then husband took over. There was heavy Friday traffic, but honestly, I was happy for it. It took us longer to get there, but we were very comfortable in our lazy boy driving chairs, and the traffic forced me to drive more slowly, which was safer and less stressful. And Rodger couldn’t bug me to speed up. We were following another big, expensive Tiffin rig that was towing a car, all the way down. I figured anyone with that coach (Tiffins are high end) plus a big Toad (that’s what the RV community calls the tow car) must know what they’re doing so I stayed close behind. He pulled over on a big side berm at Pendleton for a ‘rest stop’ and I realized what a great idea that was, so we did too. It was terrific to have a potty and snack stop without having to get out of the car! Driving under the underpasses was a trip, too. They’re mostly labelled around 15’ or more of clearance but it felt like we could just reach up and touch them from our high perch. Or worse, that we were going to hit them, which thankfully we did not. We’ve seen not so funny video footage of a low overpass where coach after coach drives through and roofs and A/C units just going flying off. Big No No! In fact, we’ve realized that we can’t even take our coach south to Malibu through the tunnel. It will only fit if we drive right down the center over the double yellow line. So, if we want to go the short 5 miles to the beach from our house, we will have to go all the way around to Sunset or the 10! In a fire, we are going to have to plan to evacuate north unless they close Malibu Canyon to northbound traffic. Anyway, back to the adventure to Melysa’s house. We arrived safely but before we parked, the 4-year old was very anxious to take a drive. So, she climbed aboard and we drove her around the block to pick some lemons. A most exciting ride! Then we very carefully backed into the driveway. This maneuver has been giving me nightmares for a while. The driveway isn’t a straight shot. The curb comes off at an angle. I was concerned that we’d have to drive up over the curb to back straight in, so I had a curb ramp delivered to the house before we arrived. That was a waste of $100 because we made it! Very slowly, inch by inch, making micro adjustments and voilà…it worked and we fit. There were some trees and bushes we had to push away to open the slides, but we got them fully deployed (I think we have some micro scratches but hubby thinks we can wax them out). Then we tried to hook up. No problem with the water — easy peasy. But electricity was another story. We have really gotten a full education on this since then. She has a 30-amp dryer outlet in the garage we thought would be perfect. It wouldn’t give us full functionality — we need 50-amp for that — but it would be plenty. We could even run one A/C unit if necessary. But our adapter plug wouldn’t fit it. We realized it’s a different configuration. Amazon to the rescue, we quickly ordered another one for delivery Sunday. In the meantime, we plugged into an ordinary 15-amp household outlet which is enough to run the lights and frig and, I’ve since learned, the microwave too if you don’t use too many other things at the same time. Not sure about the TVs. Definitely no A/C. We have a generator if we need the full 50-amps but we didn’t want to disturb the neighbors. Want to keep them friendly so no one objects to us being there from time to time. Well, the new adapter arrived and went beautifully into the wall but wouldn’t hook up with our plug! Oy…so there are different configurations of 50-amps too. We finished the weekend on just 15-amps. When we got home, Amazon again provided what I thought was the perfect adapter — it’s actually to charge Teslas and would definitely fit both ends. Problem solved. Not! At the surprise party, we saw another friend who has an RV and is very handy, and he was horrified that we would try to plug into a dryer outlet. Said we’d fry the rig! Not good at all. We thought perhaps he didn’t really understand since his rig is older and probably runs on 30-amp/110 but we run on 50-amp/220. So why wouldn’t 30-amp/220 be ok? We called our electrician friend who knows our coach and he assured us it would be fine. But then I figured, why not pose the query on the Facebook group for our coach. It’s an incredible resource. Other owners are constantly posting questions and advice and people respond within minutes. It’s amazing. Everyone said emphatically, Don’t Do It! Skeptic that I still am, I called the manufacturer and sure enough — NO WAY! We will fry the rig. I still don’t understand why but I know very little about electricity. Bottom line, the universe protected us doofuses once again. Phew! Sadly, we are restricted to 15-amp service from now on while visiting — or the generator. But we can make do.

On the brighter side, the kids had a grand time playing in the thing. We had to open every cabinet, convert the sofa and table into beds, drop down the overhead bunk, and basically spend a great deal of time with them just hanging out and playing in there. Sunday night they wanted to all eat dinner together at the little table. We got our first stains — spaghetti sauce on the new footrest pouf I bought, courtesy of the 8-year old, and some ink on the banquette seat from little miss “I’m 4-years old now” but I don’t care at all. That’s small stuff. The big stuff was getting them in there and interested in traveling with us, hopefully soon. And that’s a definite yes, please!

Part 4 — Moving forward:

M oncologist told me something I’m finding intriguing and can’t stop pondering. He suggested my future holds some kind of role in supporting other women through this journey. I like the concept but I’m not sure how to make it happen. My surgeon recently asked me to talk to another of her patients who was struggling with her own decision, as I did. I hope I helped her, and I was gratified to be asked and to be able to “pay it forward” in some small way. I’d like to do more of that. I just have to figure out how.

The events of this past week in Surfside, Florida have, of course, been horrific and devastating. They remind me once again of the fragility of life, the uncertainty of every day and every minute. Over a hundred people were safely tucked into their beds, quietly dreaming the night away when their futures were instantly shattered and stolen. Cancer is only one of a huge assortment of possible end games. The key to life is to remember always that I still have it, and to live it right now. Don’t wait, don’t delay, don’t forget. Stay well, everyone. Enjoy the summer weather and the freedom from masks here in California. Tell everyone today how much you love them. Live fully, right now.

Ladies, remember to “Check your boobs — Mine tried to kill me”.

With love,

Jill