Upside Down

Saturday, June 27, 2020. There’s been a long pause since my last post. Nearly two months. The treatments have left my brain feeling mushy and it’s hard to get inspired to sit down and share. With our world in such an upside down state, sharing my personal cancer journey feels so boring right now. Like I’m a broken record. You know, same shit different day.

The good news is I’m done with radiation and all the redness and slight blistering have disappeared. All in all, I tolerated it really well. The only way to tell I had anything done is that the skin where I was radiated has a color reminiscent of the muddy brown you turn after a bad sunburn.

radiationBellAs a reward for completing the radiation treatments, I got to ring the celebratory bell. It was anticlimactic given I was the only one present for the actual ringing. No fellow radiation patients. No staff encouraging me to “ring that bell.” No family members or friends cheering in support. Just me and the bell. It left me feeling like, big deal. So what. Upside down.

I’m just happy the treatments are behind me. I really hated getting zapped every day.

Once the radiation ended, my oral chemo doses doubled. My next appointment with Dr. Rugo is in about a week and a half. At that point I expect the dose to increase again. I’ll also find out how much longer I’m expected to take it. My guess is through September. 

The side effects continue to be manageable, my immune system remains stable, I have all my hair, blah, blah, blah. Compared to the world at large, I’m doing great.

I look forward to that glorious day when the rest of the world is doing great, too. The wounds we all suffer now are so deep. The pain so intense. The fear overwhelming. I long for the day when our upside down world has begun to heal. Healthy and united. Right side up.

Stay safe. Be well. Share the love.

Only if we understand, can we care. Only if we care, will we help. Only if we help, shall all be saved. — Jane Goodall

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


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