Radiation in the time of COVID-19

Wednesday, May 6, 2020. Today was my radiation half-way point.

I’ve been taking Xeloda twice a day every other week since March 21. The most noticeable side effect is fatigue. I started radiation two and a half weeks ago on April 20th. That was also a “Xeloda-on” week. The combination of radiation and chemo almost immediately exacerbated the fatigue. I was expecting it, but I thought it would be more gradual. I’ve been trying to get outside more and putz around the yard knowing it will boost my energy level a bit. But some days…well, I just don’t do anything. I guess the daily radiation treatments do force me to get dressed and get out of the house whether I want to or not. On the weekends it’s more of a struggle. I spend a lot of time arguing with myself in my head.

3DD69223-103D-429E-B2B6-DAE206F97E8EThe weekday 45-minute drives to the Cancer Center in Ukiah during the pandemic force me (and my husband when he tags along) to actively participate in the world as it is. My experience at the Cancer Center is weirdly different than any I had in the last 20 months. The first weird thing is no hugs, of course. But what a vastly different and impersonal experience it is to not be greeted with any sort of physical exchange. Even weirder still is that in the patient waiting area there is a poster all about hugs, and healing power of hugs. I look at it and think, “that’s not happening again any time soon.” Part of me thinks they should remove it, because it’s really kind of sad.

So when I arrive I am required to wait in my car until 5 minutes before my appointment to go into the office. I am required to wear a face mask, of course. Yes, that’s me in my homemade bandana face mask.

Sometimes, if they are running ahead of schedule a tech will come out to the car and get me. Next someone takes my temperature because of COVID-19, not because it is routine to do so for daily radiation treatments. I then change into my lovely gown, then sit and wait until one of the radiation techs comes for me. There are two radiation techs, a woman and a man, and they work in tandem getting me set up for the zapping. They, too, wear face masks. For me, that’s been the weirdest part. What I’ve discovered is that not everyone smiles with their eyes. So, it’s hard to tell if they are happy or sad or bored or engaged or just doing their job. The woman says a lot with her eyes, the man not so much. He’s really hard to read. But he’s a hummer. He hums when he’s gently pushing and pulling me into position. And his voice is friendly enough when he speaks to me. But the eyes. It’s kind of bizarre. Face masks really rob us of personality, no matter how much we try to express with our eyes.

Every Monday, after my treatment, I meet with the radiation oncologist Dr. Joseph. I do not go into his office. Instead he comes to his doorway in his face mask, and I stand about 6 feet away. He waves hello, asks me questions, I answer the questions and give him an update on my side effects. After about a five or 10-minute exchange, we wave to each other and say, “Good-bye. See you next week.” It’s all so…well, weird.

The final weird thing is the other patients. Typically, there are never more than two of us in the office at the same time. So it’s extremely quiet. And it’s always the same people I see. The patient who is just ahead of me, and the patient who follows me. I don’t know their names. I don’t know why they are getting radiation. I don’t know a thing about them. It’s all so robotic and impersonal. It’s just plain weird.

The good news is that side effects have been minimal. Yes, I am fatigued and lack ambition. I do have chemo brain that manifests as forgetfulness…I still haven’t found my hiking shoes or prescription sunglasses that I lost somewhere in this house. And my hands and my feet get overheated at night while I’m sleeping so I find myself standing in the dark on the tile floor of the bathroom at least once or twice nightly. But, so far, that’s it. My bloodwork has been good. My skin is still doing okay where I’m getting zapped, although I’m told to expect the irritation to start in the not too distant future. Time will tell.

And so it goes. One day at a time.

Life forms no logical patterns. It is haphazard and full of beauties—which I try to catch as they fly by, for who knows whether any of them will ever return? —Margot Fonteyn

Chemo brain

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Thursday, April 16, 2020. The Xeloda has the mildest side effects of any chemo I’ve had so far. Mostly fatigue and chemo brain. The fatigue isn’t even that bad. But the chemo brain is the worst I’ve experienced. So weird. I lose words mid-sentence. Or if asked a question about something recent, it’s not uncommon for me to respond with, “I don’t know. I just can’t remember.” And I just can’t seem to get motivated to do anything. Worse yet, I don’t care that I can’t get motivated. I just feel blah…not depressed, just blah. The world is so upside-down right now that I think our current situation probably exaggerates everything that I’m feeling or not feeling.

I’m used to the isolation. I have spent a great deal of the last 16 months avoiding people due to my compromised immune system. It is easy for me to do since we live 6 miles from town and our nearest neighbor isn’t even within eyeshot. During this time, Steve has done most of the shopping and continues to do so. I do most of my shopping online. What’s changed is now I’m not alone in my isolation. Who would have ever guessed?

On Monday I’m going to start 5 weeks of radiation. I’ll be done just in time for Memorial Day weekend. Big deal. Right? Most of us will likely be spending the holiday “sheltered in place.” Which means many of us will be forced to honor our fallen service men and women from afar. I don’t know. Maybe this year Memorial Day will have a deeper meaning for our nation considering all that we are going through.

See. This crazy chemo brain gets me sidetracked. My thoughts just drift around aimlessly.

I got a couple new tattoos and all plotted for radiation a week ago. Steve usually goes with me to all my appointments, but in our new pandemic world I’m not allowed to have anyone accompany me. At the Cancer Center they didn’t even allow paper exchanging hands or me signing anything to authorize treatment. Instead I gave a verbal authorization which they noted on my behalf. I appreciated the extra precautions. Especially since not only am I in one of those particularly vulnerable age brackets, but the chemo makes the coronavirus even more insidious.

I don’t personally know anyone with a confirmed case of COVID-19. But that doesn’t mean my heart isn’t hurting for all those fighting the disease or a little bit broken by the deaths that have occurred. The loss that has hurt the most was that of John Prine, a down to earth singer-songwriter who was often referred to as the Mark Twain of American songwriting. His lyrics can break your heart or make you laugh out loud. Since he died, I haven’t been able to get his songs out of my mind. I wake up every day with one of his tunes churning around…playing over and over and over. And I don’t mind. One of my favorites is “In Spite of Ourselves.” It’s funny and sweet and endearing. It makes my heart smile. A smiling heart is good for the immune system, or so I prefer to believe.

In spite of ourselves we’ll end up a-sittin’ on a rainbow
Against all odds, honey we’re the big door-prize
We’re gonna spite our noses right off of our faces
There won’t be nothin’ but big ol’ hearts dancin’ in our eyes
—John Prine, In Spite of Ourselves

And so it begins…again

Sunday, March 22, 2020. My meeting with Dr. Park and her colleague Dr. Xu (pronounced “shoe”) was enlightening and kind of creepy. COVID-19 was clearly top of mind for everyone Steve and I came in contact with. As we passed through the front doors of UCSF, we were met by a team of face-masked and gloved caregivers sitting behind a table. They vetted us with a series of health questions…do you have a fever, a dry cough, been out of the country, etc. Our answers were “no, no and no, etc.” Our reward was a yellow sticker they placed on the top of our hands deeming us worthy to enter the facility.

In the patient waiting area of the Radiation Oncology department, everyone was complying with the 6-foot radius plan of social distancing. The atmosphere was somber in spite of the fact it was St. Patrick’s Day, normally a big party day in San Francisco. I had worn my green-striped socks hoping to lighten the day I knew was going to be dominated by cancer and COVID-19. No one noticed the socks, but whenever I greeted a staffer with “Happy St. Patty’s Day!” the response was typically one of surprise accompanied by an “oh yah” smile since they clearly forgot it was a holiday. Distraction mini-mission accomplished.

Soon my name was called, and we were led to the examining room by a young woman named Lenny. She asked if she could bring us anything to drink. So as not to disappoint Steve said, “A beer.” We all laughed, and I added, “Alcohol is a disinfectant, right?”

When Dr. Xu entered, she kept the requisite distance and greeted us with a wave rather than the customary handshake. We talked a bit about the creepiness factor and how the trip to UCSF was made in record time due to the lack of traffic on the roads. Even the Golden Gate Bridge was empty, making the drive into the City seem a bit apocalyptic.

Then we got right down to business, reviewing my recent history and discussing my top two concerns: ONE. If I agreed to radiation, was there a chance of re-radiating tissue that had been bombarded 20 years ago? If so, what were the increased risks? TWO. Was it really wise to even consider radiation right now given my compromised immune system and the number of people I would come in contact with? After all, I would need to stay in San Francisco during the week (driving 6+ hours a day, 5 days a week over a 5-week period for what would amount to a half-hour treatment would be too exhausting), and where would I stay? What would the additional exposure be? UCSF patient housing isn’t even available now. Dr. Xu listened attentively. She discussed the area they would radiate. And although there would be some overlap from 20 years ago, it would be minimal and would not involve any vital organs. As for traveling and local accommodations, she agreed that postponing the radiation at this point in time was a likely option, but one that would need to be discussed and approved by Dr. Park and Dr. Rugo.

After a quick consult with Dr. Xu, Dr. Park and her nurse joined us. We revisited all my concerns. And Park gave me some statistics about my chance of a recurrence with and without radiation. It was then, I decided it was in my best interest to proceed with radiation, but not now. COVID-19 makes it too risky. Next, Park and Xu meticulously examined the landscape of my breast and pectoral area, carefully noting the rise and fall and texture of my skin. They considered the area where radiation would extend across my pectoral area and above my collarbone continuing partway up my neck. I was reassured that the long term damage to the tissue that might be re-radiated would likely only be discoloration and thickening of the skin. So I guess my future as a sexy senior centerfold model is definitely out.

All in all it was a great meeting. The newer, more targeted radiation techniques reduce the risk of damaging healthy tissue. If I were able to have radiation now, they would have me taking the oral chemo Xeloda on the days I’m treated (Monday thru Friday) and not take it on the weekend. But with radiation on hold for at least a month, the plan is to start taking the Xeloda right away. The dose is two 500 mg pills with food, twice a day, 12 hours apart. The regimen is 7 days on and 7 days off. On day 6 of my 7-days off, I will get labs done at the local hospital. The lab reports will be sent to Dr. Rugo. Soon after, she and I will teleconference to discuss the results and any side affects I might be experiencing.

Yesterday was my first day back on chemo, and it made me a little sad. I’m not sure what to expect as far as side effects go. The most common is hand/foot syndrome causing redness, swelling, and pain on the palms of the hands and/or the soles of the feet. Sometimes blisters appear. I can expect fatigue and a compromised immune system.

After I took my first dose, I sat outside on the edge of the front deck catching a little fresh air as I tried to embrace the fact that I was once again taking poison to kill cancer cells that may or may not be running around and partying like maniacs in my body. I wasn’t happy. More like borderline depressed. It was then I looked down and could not believe what I was seeing.

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The biggest 4-leaf clover I’ve ever seen in my whole life. I don’t find 4-leaf clovers. That’s my mom’s deal. I don’t even recall how many times I’ve been with her when she’s looked down and said, “Oh, look what I found! A 4-leaf clover.” She’s always been lucky that way.

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I’m taking this amazing clover as a sign. A sign of good fortune to come. A sign that I’ve made the right decision. A sign that in all the madness that is the world right now, we can expect some miracles along the way.

The miracle is to walk on the green earth in the present moment, to appreciate the peace and beauty that are available now. —Thich Nhat Hanh