radiation – polepole ~ breathe

My cancer journey so far (written for ROS1der Feature Friday)

On Christmas Day 2012 Dan, my husband, and I were standing on top of Mt Kilimanjaro. April 2015 we spent a few days backcountry backpacking in the Grand Canyon, hiking down and back up with 30 lb. packs. By November 2015 I couldn’t go up the stairs without huffing and puffing, and I had a nagging cough. My PCP had put my symptoms (fatigue, headaches, the cough) down to stress as we’d experienced a house fire in August 2015. Guess again. I found myself taking a medical leave from teaching in November 2015. On Sunday, January 3, 2016 Dan took me to a walk-in clinic because I couldn’t breathe well. The FNP saved my life by doing an x-ray. How simple was that.

After a bronchoscopy biopsy and a PET scan in Maine, I self-referred to Brigham and Women’s and Dana-Farber Cancer Institute in Boston. They immediately did radiation as palliative care, trying (unsuccessfully) to reduce the tumor, and a liver biopsy to ascertain that the lung cancer had spread to my liver (and colon). Testing for a gene alteration was done despite initial insurance denial. Dana-Farber Cancer Institute is very adept at patient advocacy. My DFCI doctor was so excited to give me the news that the cancer was ROS1+ and there was a targeted therapy drug to treat it. Hope! She said I’d do well in treatment because I was young and healthy! (I was 58 and dying.:) Something she said that day seared an image in my mind of nasty little ROs1 driving his speedster throughout my body and the TKI choking off the fuel. Dana-Farber is a place of hope, caring, and expertise. While researching ROS1 I found another place of great hope, caring, and expertise – the ROS1der website and FB group. I am so very grateful for this forum.

I began taking crizotinib March 2, 2016. After finding the right combination of anti-nausea meds and a good supplier of Imodium, I tolerated it well. Within a week I was breathing easily. While never NED, everything was greatly reduced and remained stable. By summer I was swimming and exploring with our grandchildren at our camp. My scans were 8 weeks apart.

In March 2017 I began having odd headaches. A brain MRI determined that ROS1 had evaded the hero crizotinib, crashing through the barrier and entered the lining of my brain. (Leptomeningeal carcinomatosis, shouldn’t have researched that one. The statistics available are outdated.) Again DFCI offered hope. I qualified for a clinical trial for lorlatinib, a TKI that does penetrate the blood brain barrier. I stayed on crizotinib until one week before beginning lorlatinib in July 2017. I gave up teaching to make keeping my body strong and healthy my priority. Within weeks the cancer seen in my meninges was reduced by 80%, everything else remains stable. My dosage was reduced early on due to painful neuropathy. I now have a brain MRI, CT scans, labs, and appointment once every 12 weeks, with labs at 6 weeks. Twenty-nine months so far!

My days are filled finding joy in the everyday every day. In May I reached the first goal I set at diagnosis, attending my granddaughter’s college graduation. I recently hiked (slow-walked) a small mountain. I try to tell anyone willing to listen about the prevalence of lung cancer and the importance of testing once diagnosed. I write to local papers, and to local, state, and national officials. My family participates in the Free ME from Lung Cancer annual 5K. I serve on a patient and family advisory board of the Maine Lung Cancer Coalition, and I participate in a phone buddy program, offering hope to others. My blog, polepolebreathe.blog is named as a reminder that slow and steady wins the race. Pole pole means slowly in Swahili. That is how Dan and I followed our guide to the top of Africa one Christmas Day, one step at a time. Always, always have hope. 59233457353__C7F9845D-C46E-45CE-9B6B-667E849E2D3A

Normal must be overrated

Who really wants things to be normal anyway? I never did, but then I didn’t really need normalcy before. This normal isn’t new or normal in the typical sense, but it is my normal as I live with metastatic cancer. And live well I must say. To do so I’ve needed to develop many strategies and work arounds. And I’ve had a lot of help. But it’s all definitely worth it. Quality of life really matters. Maybe some of my strategies will work for others.

Learning and remembering your energy limits is important. Kind of tricky too as it’s a moving target. There are days I have great energy and some that I have a deep, deep odd tiredness. Most days though I wake up, get myself going and go strong until noon. After that? Anybody’s guess. I learned this week that I’m no longer able to push through it like I always did in my old life. When I’m done, I’m done. Kind of like a baby. And that is okay! I prioritize and sometimes have bonus time for something more.

“Love what you do. Do what you love.” I’ve always believed this makes great sense. Well there’s lots of things I love, but can’t do anymore, or not yet in this “normal”. That’s okay too because I’ve discovered I love lots of things. So I’m focusing more time on the ones I can still do (like photography, being in nature) and maybe just adjusting how I do them. And I’m learning and doing new things too! Things like writing a blog! I sure have more time to read now, and I love to read pretty much anything. I have four books going right now; one fiction, two health related, and one nonfiction nature-based. None on education -that’s a first!

Shortness of breath, my huffing and puffing. Haven’t really found good strategies except to go slow and steady. Not likely to do much running this spring, but I am determined to do more walking in my new OrthoFeet sneakers.

And then there’s the digestive system issues. When I first started crizotinib I took a few different meds before my system could tolerate it being there. Imodium went with me everywhere because I never knew when I’d have a bout of diarrhea. And no advance notice usually, so pads or disposable underwear, extra clothing, disposable wipes. Carried my backpack everywhere. That doesn’t seem normal, but it became routine. In addition to the clothes I try to remember to carry food that I know I can eat in case I can’t eat what is available. With Queen Lorlatinib, my current targeted therapy drug, the digestive system issues are much less for me at this time. (Fingers crossed!)

Lorlatinib brought some new challenges that I’ve referred to earlier. One, neuropathy, is common for people on chemotherapy drugs and for people with diabetes. As much as I love to go barefoot, I cannot now, even in the house. Anyone who has an inkling that they have neuropathy in their feet should start wearing shoes or slippers ALL the time. I learned the hard way. If you have hand neuropathy, try acupuncture – helped me tremendously. I tried some of the ointments and cannabinoid oil, but I haven’t found something yet that I can say gives me relief from neuropathy. Wearing gloves for any work and even driving, and keeping my feet well padded have worked best. And, I just don’t stand still for long periods of time or do lots of peeling veggies as those as things that are sure to bother. I’m so fortunate that I don’t have to try to work. Luckily I’m a good sleeper, so it doesn’t bother too much at night. Oh yes, and ignore the feeling that a tick is crawling on your ankles. Or maybe not. Probably just neuropathy, but best to check. I spend a lot of time looking at my ankles!

Weight has been an interesting problem over the past 2 years, four months. After the fire in the fall of 2015 I decided to only buy what I absolutely needed for clothing. Then as I became sick I began to lose weight. By the time I started on crizotinib (March 2016) I’d lost more than 30 lbs. and I’m only 5’0″ and wasn’t ever terribly overweight. Between cancer taking its toll and radiation doing a number on my esophagus, I had a few months of not eating much, eating mostly liquid form foods, etc. And, as far as clothes went, thanks to radiation I couldn’t stand anything near my neck or wear a bra. So my daughter bought me some size small stretchy pants and v-necked loose tops. That’s been my preferred wardrobe ever since. I eventually gained all that weight back when on crizotinib.

Weight gain is common with these drugs, but I had no idea what I was in store for with Lorlatinib when I began it July 2017. Everyone I know on this targeted therapy drug (still in clinical trial) has had this problem to some degree. I started out gaining a pound a week. Yes, one pound per week! Eeek! And it was not simply that I was feeling better and eating more, or that I wasn’t able to exercise enough. But, thanks to the stretchy clothes I just moved to medium, keeping in mind my “fire resolution” and bought only what I needed. I was beginning to feel uncomfortable with the extra weight. By January I had gained 20+ since beginning Lorlatinib. July to January, as much as my pregnancy weight gain. From March 2016 to January 2017 that’s a 50 lb weight gain. (Both pregnancies combined!) Without even trying to lose the 30 or gain back the 30 plus 20. Finally, in January the trial nurse mentioned someone having success with a paleo diet, so I tried that. (I wrote about it earlier.) Paleo works for this! I immediately lost 8 pounds and haven’t gained more. As long as I feel “well” I can do this. As I’ve learned, weight loss from cancer and treatment AND weight gain as a side effect are common. I work with and around this by eating well and wearing my comfy clothes.

Finally,while trying to understand this “normal”, I think maybe the greatest lesson and the greatest blessing that I’ve gained from this journey is that it is more than just okay to let or even ask others to do things for you. I couldn’t do anything for someone else and very little for myself when I was so very ill. That’s when I began to truly understand what gratitude and expressing your gratefulness does, not just for you, but for those you’re grateful to. People who care want to do things to make your life easier and brighter when you are struggling with something in life. I still want to do everything for myself, but I don’t feel badly asking for help or letting someone else do what I don’t have energy or strength to do. I feel loved and grateful. And I like to look for things I can do that will brighten their days.

Late this week I go to Dana-Farber for scans, blood work, brain MRI, EKG, and oncology appointment. Dan will drive and wait patiently for me every step in the day. I will post an update, hopefully by the weekend. The prayers,positive energy and thoughts of all who follow this cancer journey give me strength.

Baseball and softball have started for the children. Fun times for grandparents. Finding joy in the everyday every day here with Dan, the family, the 3 little dachshunds, and Dottie and Matilda, Nigerian Dwarf goats.

Radiation (or Radiotherapy as it’s really called)

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.

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