When I first got to Dana Farber the doctors recommended radiation for palliative care. Palliative care is care intended to improve the quality of one’s life. (It isn’t always during the end of life period). At the time it was recommended, doctors were waiting for the results of genomic testing, and were very concerned about my extreme shortness of breath, coughing, and feeling of chest pressure. My tumor was(is?) in my left lung hilum, a rather tricky spot (kenhub.com hilum info), where some important stuff happens that shouldn’t get blocked. All we knew is that we came to Dana Farber for the best treatment and we were going to follow their advice. We didn’t see many other options jumping out.
So, it was explained to us that to give me relief quickly, I would have “30 treatments worth” of radiation in 10 treatments. Five days per week, two consecutive weeks. The hope is that the tumor would shrink quickly and I would be able to breathe. Sounded like a good plan. Now after a month of tests we’re finally going to do something to get rid of this beast inside me. Let’s go!
After meeting with the radiation oncologist, the next step was mapping. For the mapping I was on a table like for any scan, but there was something like an inflatable beanbag under me, that when deflated molded right around my body. In the room was a Dr. and two young technicians. I was wearing a Johnny, but of course that didn’t really matter as they needed to access my chest. Now I hadn’t really thought about this too much, but they needed me to be lying just as I would for every daily dose of radiation of course, and what they were mapping was my chest. So, there were my somewhat aged, floppy breasts being ever so gently moved and set back in place while the process happened. Luckily for me, I’m not too uncomfortable being partially nude in the medical setting, but I hadn’t put much thought into what they needed to do, or how long it would take.
Contrast dye CT (an IV for this) and lots of marker on me (here, there, and everywhere in different colors above, on, beside, and under my breasts), with a machine giving them the exact measurements of where to mark (looked like green lasers swirling around), 30 seconds of monitoring my breathing, and then my tattoos. Four tiny dots, smaller than my moles and freckles – good thing they are a different color. One above one breast, one under the other breast, and one on each side of my rib cage.
After several days of Quality Assurance testing on a dummy, there was a trial run on me. I was put in the mold they made last week during radiation mapping (that’s what the inflatable thing was for!) and had x-rays, using the coordinates of my tattoos to make sure that what they are hitting with radiation will be what they want to target. Quite an amazing process.
The radiation machines are assigned color names. Mine was purple, a good sign because that is my favorite color. It was explained to me that within a few days I would likely have side effects (skin “burning”, fatigue, cough -already had one of those, soreness in my esophagus and throat, and loss of appetite. There also may be some additional side effects months after radiation. At that point I just wanted to breathe and feel like we were doing something, and a liver biopsy the day before starting radiation confirmed that the lung cancer was there too, so the radiation needed to be completed before beginning what we thought would be chemotherapy treatment. (Received confirmation of the ROS 1 cell mutation during radiation and treatment would be a targeted therapy drug, but that too couldn’t happen until I recovered some from radiation.)
I ended up having 10 radiation treatments. Each day you check in, go to the dressing room and put on your Johnny, leaving on undies, socks, and shoes, and then sit in the waiting area, completing a questionnaire on a tablet about symptoms. Dan would wait in the waiting room where we checked in. I seldom waited more than a few minutes and then into the treatment room, climb up on the table (a struggle because of broken ribs due to coughing), lie on my mold, and hold still while the machine hovered over me. I think that an X-ray or scan was done each day as well. Of course, for their safety, the technicians running the equipment are in a different room once they get you in place. When you’re done (5 minutes later) they come back in and you’re on your way.
Over the days (even for just two weeks), you start to build relationships with the technicians and the radiology/oncology nurse that meets with you daily. One day a technician admired my purple sneakers, and the following Monday announced that she had purchased a pair over the weekend. (That’s what began my search for fun socks, shoes to entertain technicians when I have tests done. Almost always you can keep your socks and shoes on when they’re looking at your top half.). The nurse was the one who kept track of your “vitals” (stats on everything from weight to heat rate), asked about appetite and pain, and offered suggestions to either help prevent or relieve the radiation “sunburn”. Dan would join me for the check in with the nurse.
Once a week we were scheduled to meet with the radiation oncologist. But I think we met with him four times. He always showed us the X-rays or scans that were done. On one visit we had just learned that I had the ROS 1 genetic driver and would go on a targeted therapy drug. He was SO excited! He said this meant there was a treatment that would target only the cancer, not my whole body like chemotherapy would, and it was known that it works on my mutation. Lucky me! He really did have us feeling like we’d won the lottery. (And really? On the cancer journey, we had.) Once he explained that my lung had partially collapsed, but that he hoped after radiation it would re-inflate itself. (And it did!) He also, very sadly, told me near the end of radiation that it really had done nothing to shrink my tumor, but I would still, for months to come, likely suffer the side effects from the radiation. He was genuinely sorry about this.
Now, what was life like during this time? Well, Dan and I stayed at the Hope Lodge (free thanks to the American Cancer Society) in Worcester, an incredibly beautiful, old Victorian(?) home with original woodwork throughout. We would get up early, drive to Boston, park in the Dana Farber parking garage, go up to the third floor to eat breakfast in the Dana Farber cafeteria, and head down to the below ground level where radiation takes place. This all involves quite a bit of getting in and out, up and down, and walking. Toward the end of my treatments, Dan thought I should use a wheelchair. We didn’t. We did go very slowly, but we had time. And, we had learned from Mt. Kilimanjaro – polepole (go slowly in Swahili) breathe!
Once done with radiation, unless there was another appointment, we returned to Worcester to Hope Lodge where I rested, and likely Dan watched me rest. Our room at the Hope Lodge was upstairs (that was a known before staying there). Once in our room we didn’t go out much because I became so fatigued from the radiation that the stairs seemed like a mountain. While there we got to know other visitors/patients and the staff, often sharing meals with them. I wish I had felt better as I would have enjoyed talking with them more. There was a large shared kitchen with refrigerator and storage space for each patient, so most meals you prepared yourself, but each night we were there dinner was brought in or prepared by a volunteer organization or group. Oh nice is that! So, at dinner we ate family style. I wasn’t really able to fully appreciate or enjoy the dinners at that time, but it was truly thoughtful and there’s always something special about sharing a meal with others.
On the weekends before, between, and after radiation Dan drove us the five hours home so we could “just be home” for a day and a half before heading back again. While home magic happened and our laundry was done and food resupplied. My job was to rest and keep breathing. That’s all I did.
I will always have damage from the radiation. A few months after I had lung inflammation (pneumonitis) that needed to be treated with steroids. The fibrosis (like scar tissue) continues to worsen even now, 21 months later. This was a surprise to me. I was told it could continue to have an effect, but I didn’t realize it could continue to worsen. I think I was lucky with my esophagus, or at least so far. Things that are quite hot (temperature) bother me going down, and I try not to eat much spicy food. I have developed a hiatal hernia, but have no symptoms. I’m sure all of this damage could be much worse, so I feel fortunate.
Take-aways from this part of the journey: the experts are doing what they think and hope will work, but nothing’s a given; even when desperate, try to take time to consider pros and cons; compassionate people are everywhere you go; caregivers are lifesavers. Always stay hopeful and strong.