Part 10 of my Cancer Journal shows what it’s like to get radiation treatments to the brain and torso. I hope my journal entries and letters to family and friends chronicling the ups and downs will encourage you.
1/15/18 – From an Email
Thank you so much for your prayers for me. At the end of December, my doctor told me that all my latest scans were clear – so we’re thanking God for that! This week, I’m scheduled to get a single radiation treatment to the brain. My doctor also wants to give me six to eight weeks of radiation to my lungs and mid-section, but I’m not sure yet when that will start. The nice thing is I’m feeling better now. Yesterday, for the first time in months, I went to Sunday school and church, out to dinner with the family, and to Evening Service.
1/16/18 – From an Email
This week I had an appointment with a radiation technician. He fashioned a mask by heating a sheet of plastic and molding it to my face and head while I was lying on the x-ray table. The only bad thing was it stuck to my hair and pulled some out – ouch! – enough that you could see long strands hanging from the inside of the mask after he was done. Fortunately, the mask had an opening for my eyes, nose, and mouth. Some masks cover the face completely. Can you imagine?
1/18/18 – From an Email
I had an appointment yesterday at 1:30 for a radiation treatment to my brain. Lee went with me and while sitting in the waiting room – we’re both so Type A that we got there 30 mins early – we played Scrabble on his Kindle.
The assistant who called my name said the process would take about an hour. An hour?
News to me and a bit disconcerting because I couldn’t imagine wearing the tight mask for that long without coughing or getting an itch. Anyway, there were about five staff people on hand, including the medical physicist I met last Friday. Before we got started, I asked if I could take some photos, and the technician offered to take some for me.
After I stretched out on the table, she put the mask over my face and clamped it to the table. She and another tech adjusted my position, covered me with a warm blanket, and told me to wave if I needed anything.
(Ha – I needed lots of things – a looser mask, softer table, clock, tissues.) She took photos of me, then explained what was going to happen, adding they’d be coming in and out of the room. I listened to the country music they provided, tried to avoid the beams of light from who knows where, and gave up and closed my eyes.
During the treatment, the table I was lying on turned slowly, which made me feel like a hot dog on a skewer, although I felt no pain other than the constriction of the mask. Fortunately, I was done in 40 minutes instead of 60. Every time my thoughts filled with what-ifs (what if I need the bathroom? what if I throw up? what if we have an earthquake?) I distracted myself by praying for the staff and others and thanking God that I don’t suffer from claustrophobia. Afterwards, the radiation oncologist said the treatment went fine, and the scan showed no evidence of metastasis, thanks be to God!
1/25/18 – From an Email
Got hit bigtime by nausea, which I didn’t expect, and fatigue about a week after the treatment. No nausea now. But I can’t see to read anymore, probably because of the chemo, so I had to buy Readers at the drugstore. Much better!
1/26/18 – From an Email
Today, I had an appointment with a technician to prepare for the radiation treatments to my torso. He took measurements and gave me tattoos in the form of 4 tiny freckles on my chest and sides. Ouch! I don’t get why anyone wants a tattoo, do you? I felt so exposed, so vulnerable. No female attendant, either. But I guess it’s par for the course these days. So I ended up lying there trying not to cry, thinking how Jesus hung naked on the cross, and being glad I wasn’t being crucified, too.
2/2/18 – From an Email
Something happened recently that made me think of you and how you felt when your husband prayed aloud for you. A couple of weeks ago, someone in our Sunday school class prayed aloud for me for me and my appointment to have radiation to my brain, and then in the evening service, the pastor prayed for me, too. Although others have prayed for me in my hearing over the years, this time I was so moved and humbled both times that I could hardly hold back the tears. Now I see what you meant by how powerful it was to hear your husband pray for you.
2/8/2018 – Journal Entry
Had RT (Rad Treatment) #3 today and my once-a-week visit with my radiation oncologist. He took some time to explain the process and said they’re giving me EBRT (External Beam Radiation Therapy) using a linear accelerator. I’m getting IMRT (Intensity modulated radiation therapy), which, according to a booklet in the exam room, is a specialized form of 3-D CRT (Three-dimensional conformal radiotherapy) that modifies the radiation by varying the intensity of each radiation beam. In my case, the focus is on any microscopic cells that might remain in the mediastinal area, roughly the middle organs of the chest between the stomach and the head.
I’m noticing gobs of hair on my hairbrush, my clothes, and the couch. Another patient in the waiting room asked me if I’d had chemo yet, and when I said yes, she said, “But you still have your hair!” I’m so blessed that I didn’t lose it completely and feel a bit guilty for being concerned about thinning hair. But God keeps track of even our smallest concerns. Today’s scripture reading contained these verses:
Are not two sparrows sold for a penny? Yet not one of them will fall to the ground outside your Father’s care. And even the very hairs of your head are all numbered. So don’t be afraid; you are worth more than many sparrows.” (Matthew 10:29-31 NIV)
The less hair I have, the more comforting these verses are to me!
2/13/18 – From an Email
I had RT #6 today, and it was fine, routine even. They’ve trained me to walk past the receptionist at the Radiation Oncology Desk, go straight to a changing room, put on a gown, put my clothes in a locker, and wait in the patients’ waiting room. A radiation therapist calls my name, I hop on the table, they position the machine, and leave. The machine – a linear accelerator that looks like something out of Star Wars – has several arms that rotate around me while I listen to sixties tunes. Sometimes I use the time to pray the treatment will be effective and for friends who are also fighting cancer or other health issues. Focusing on them put things in perspective, you know? The nice thing is there’s no pain involved in the treatment. In less than 15 minutes, I’ve apparently reached the right “doneness”, and they help me sit up and hop off the table.
2/20/18 – Journal Entry
My full calendar of appointments reminded me of something that cracked me up last fall. A close friend said, “Norma, if you need a ride to a doctor’s appointment, and Lee can’t take you, nor your kids or church friends, and you can’t find a ride at all, well, I’d…I’d call a cab!” Although I thought it was good advice and didn’t think she meant to be funny, Lee and I had a good chuckle anyway.
2/27/18 – Journal Entry
My radiation treatments so far (to #15) went easier than I expected. Each weekday I drove the 20 miles to Everett, changed into a hospital gown, had my treatment, and drove back home. (When Lee was off work, he drove me.) So far, my only symptom with the series has been fatigue. Although I go to bed early, I wake up tired and nap several times a week. Had to push myself to get to the gym last week. I had a Eureka moment one day – that fatigue doesn’t mean pain, just lack of energy. So I don’t do much except read, write, eat, play games, watch crime shows, and work on jigsaw puzzles. Which wears me out!
My Pennsylvania daughter arrived on Tues, Feb. 20, to help me out for a week. She’d been offering to fly out, partly because she hadn’t been able to do as much as my son and younger daughter had. The very next day, she shopped for groceries and made chicken and noodles, one of my favorite comfort foods. I felt so pampered. Lee took time off work, and we all went to Everett on Thursday for my treatment so they could see the linear accelerator.
On Saturday, my dad (from Spokane Valley) and my sister and my niece (from Idaho) and our family went out for lunch.
In the afternoon, the group celebrated our birthdays, which are two days apart. Both daughters got together to make carrot cake – delectable.
Although I was in a daze, I felt loved, honored, and grateful to see everyone.
3/2/18 – From an Email
It’s been a pretty good week, treatment-wise. In case you’re interested, here’s a short video that shows a guy having radiation therapy on a machine that’s similar to the one they use on me.
3/7/18 – From an Email
I feel fine but tired no matter how much I rest. Had some soreness last week in my esophagus after eating a few Buffalo wings – that’ll teach me. I opted out of attending our grandson’s jazz concert on Sat because it was going to be a long day hanging out in the mall, and I needed to lie down. Only 9 more radiation treatments!
3/16/18 – Journal Entry
Yesterday I was exhausted more than any day so far. From the moment I got up in the morning I had the urge to go back to bed. But I couldn’t because I had to get to Everett for a treatment. Afterwards, I made myself wait to rest until after lunch. Napped for over an hour, still felt tired. No motivation to write (except brief emails), much less do anything that doesn’t have to be done. I pushed myself to do a load of laundry. After Lee and I played a game of Ticket to Ride Africa, I read for a while stretched out on the living room couch. Was in bed by 8:30. Read until 9:15 or so. Got up this morning at 7:30.
Today I had RT #28 of 30. One of the radiation therapists told me they only got the machine, the Varian Edge, two months ago. It pinpoints the radiation beam within 1 mm of accuracy. I’m thankful for the technology, praying that it will kill the microscopic cancer cells near my esophagus.
Discovered a connection with my radiation oncologist after I learned he went to the same school I did. His, ahem, older brother and I were in computer classes together. Nice to find out my classmate is doing well. I also enjoyed chatting with my doctor, if only briefly, about something other than cancer.
3/22/18 – Journal Entry
Today I didn’t get to have my scheduled CT scan (lungs, pelvis, and abdomen) – after I drank a liter of the barium concoction – because my kidney function test came back too low (GFR was 38), meaning my kidneys might not be able to handle the IV contrast medium. I felt sheepish about being dehydrated because it’s been a problem in the past. My first inkling of dehydration was yesterday when I stopped at the store for a birthday card and came home with watermelon, celery, and lettuce. I immediately increased my input. My oncologist ordered an appointment for a 2-hour infusion, followed by blood work the next day, followed by the CT scan, followed by an appointment with him the following day. Counting a previously-scheduled appointment on Weds, that makes five appointments next week, one per day. I’m praying there’s nothing seriously wrong with my kidneys.
4/2/18 – Journal Entry
I had an IV infusion of saline on Monday and blood work on Tuesday, which showed a GFR of 38 again. So I contacted my oncologist’s office, and they ordered the CT scan to be done without IV contrast on Thursday. On Friday, the oncology nurse practitioner told me the scan was good. Thank God! She didn’t know what could’ve caused the low GFR and suggested I see a nephrologist.
Today, I did some research online and discovered that both cisplatin and pemetrexed (the chemo drugs I received) have been shown to cause damage to the kidneys, even months after chemo is discontinued. With Lee’s advice, I decided to keep up my plan to drink at least 8 glasses of water per day, cut out caffeine (diuretics), and wait to see my next GFR before seeing a nephrologist. Also, I learned that dehydration can cause hair loss. Who knew?
4/13/18 – Journal Entry
Had a follow-up MRI of the brain and learned if was negative – praise the Lord!
6/8/18 – Journal Entry
After radiation treatments finished, I felt a sense of freedom I hadn’t known for nearly a year. My calendar was strangely empty of medical appointments. While continuing to recover from fatigue and dehydration and itchy skin at the radiation sites, I resumed seeing friends, giving piano lessons to my grandson, and catching up on favorite projects. Oh, and I don’t need the Readers anymore. A million thanks to all of you who prayed for me and to the Lord for answering your prayers!
Thank you for reading my saga.
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Posted on June 8, 2018