It turns out that I had reason to be concerned about Radiation Therapy. For me, the side effects were hard.
My skin was burned, red, sore, and blistered. It wasn't exactly like a typical burn, because the muscles and fascia and bones underneath were also burned. "Acute Radiation Myodermatitis" is the name and I could feel it. The side effects are delayed and cumulative, so I had no skin changes until the last week of therapy and then things got more intense from there for several weeks.
The seroma (collection of fluid) under my left mastectomy incision that was left over from surgery got much larger and needed to be drained. Twice. After the second time, the surgeon left a drain in place. When my fever increased, the redness in my skin increased, and I felt bad, we started antibiotics. When I kept deteriorating, I went to the hospital for IV antibiotics. Two days and two nights in the hospital turned things around. Nothing but improvement since then, but it's been slow going.
I have deep respect for Radiation Therapy. Of course I can't know what it has done for me, but the statistics say folks who get RT are more likely to live longer and avoid breast cancer recurrence. I am down for both of those outcomes for me. Powerful medicine. And powerful side effects.
These days I feel well. I am back on my yoga mat, in the gym, in my garden, and back in the office for a full schedule and seeing patients in person (and virtually when requested). I have minimal discomfort and few limitations. My pond is calling to me and I am hoping my surgeon will soon support my wish to return to swimming. Forbidden fruit sure sounds sweet.
Honestly, I have a lot of mixed opinions and so many feelings about receiving radiation therapy.
I am tired of having treatments for cancer and of the side effects. I long to feel really well again. I worry about short and long-term risks and side effects. It's a lot of work. Daily treatments, 5 days/week, about 10 minutes in the machine, but about an hour in and out at the medical center. The supportive care I am providing myself takes far longer: sauna the night before, exercise in the hour before, four doses of niacinamide in the 2 hours before that treatment, an hour in the Hyperbaric Chamber after the treatment, handfuls of supplements, eating a careful diet. It's work to be alert and advocate for myself.
I am also increasingly aware of my gratitude for the treatments and for the people who are so committed to providing them with excellence. I read, hear and witness the advances in the technology designed to make all the treatments I receive more and more effective, safe, and tolerable. My own health and resilience is a treasure. Frequenting a teaching hospital is an opportunity to witness a broad spectrum of physical health experienced by people who are receiving treatment. I experience this as an antidote to self-pity.
Despite how much time it takes up, I am grateful for the access to and the knowledge of supportive therapies to help me receive and integrate these medical treatments.
Mostly, I am grateful for the fact that I am tolerating these treatments really well, that they are working to treat my cancer, and I am nearing the end of the most intense phase of treatment.
I am so very glad that I have been able to continue to practice family medicine and recently to return to a more active work schedule. I am once again seeing patients in person, offering acupuncture, and in the office 4 days/week. I rejoice that my practice has weathered the challenges of a pandemic and my own illness.
A few months ago, a friend began offering yoga online twice weekly. I love her and her energy and I have benefitted from yoga in the past, so I gave it a try. It's an intense hour and it took me many weeks before I could do more than half of the poses she leads us through. I am more competitive than I like to admit and I don't often stick with things that don't come easily. This time, I was kinder to myself than I normally would be since I had just come through chemotherapy. I was also motivated to try to get stronger in preparation for surgery. It just makes sense to me that stronger muscles are more likely to be flexible, to recover their flexibility and to tolerate the challenges of surgical injury and recovery better.
Carrie's classes are still quite a challenge for me and I have yet to get through a session without having to accommodate or retreat to child's pose to take a break. She often offers modifications that increase the intensity of the pose and I rarely even consider most of those modifications.
Yoga is really helping me. I could and still can feel myself getting stronger. I feel more stable in all the poses. I feel that strength persisting into the rest of my life. My balance is better. I am more flexible. I really sense the flexibility in the garden. Every day I can reach my arms further over my head with less discomfort.
I want to really give a shout out to yoga for the rotational flexibility that I would likely not have even noticed was needed. In my daily life, I rarely rotate my trunk (maybe reaching into the back seat while in the car), so I didn't notice how much my chest tissues need that movement and are needed for that movement. Yoga moves me through that range, pointing out how tight I was and still am. Different rotational poses bring stretch and mild intensity to different tissues. Daily there is more movement and space.
Yoga also brings up emotional and spiritual stuck or tight places for my attention and grounds me to be able to take on the work of being more flexible and rooted energetically.
Highly recommended for times of health challenges or times of good health.
Be well. Breathe. Elizabeth
Goodness Gracious! I have always believed in the effectiveness of physical therapy and thought that not enough people got it. I had no idea how helpful it would be for me.
I had my first session last week and right away, I felt better. Way less pain. Way more range of motion and flexibility. Way more information. Lots of wise guidance.
Physical therapy is more than just a description of exercises to do at home. And it's more than the exercises and movements you do with the therapist.
My therapist did several things with her hands on my body--cause it's body work after all. My skin is a little numb and I can't see my chest and armpits easily while lying down, so I don't quite know what she did. But there was some gentle stretching of my skin, I think, and she moved my arms while she applied gentle pressure to my lower ribs while she coached me in breathing and POOF! A lot of resistance went away and I could suddenly move my arms further. There was some emotional release as well, cause I have felt lighter and less restricted emotionally since.
I am really glad that I ASKED to see a physical therapist BEFORE surgery. Like my first visit with her was before the surgery. She reassured me about how manageable lymphedema can be and measured my arms to have a baseline and to be able to fit me for compression sleeves, in anticipation of treating any lymphatic congestion early. She also informed me about things I can do to prevent lymphedema and to treat it early if it happens. So. Very. Helpful.
This most recent visit was also in anticipation of Radiation Therapy. She helped me to understand that this is no time to do strength training for my upper body since my upper body will be doing enough to integrate this treatment.
So here's a shout out to all the physical therapists out there. The system doesn't appreciate you nearly enough, and I haven't either. The rest of us should get therapy for any surgery and for most injuries (if you can) and encourage our friends and families to do the same.
March 18, double mastectomy with sentinel node biopsy as a same-day surgery procedure.
My mother died just as I was leaving the hospital. She had been on hospice and quite impatient to be out of her discomfort and on to the afterlife since mid-December.
I have had quite a remarkably quick recovery from surgery and was able to ride to SC to be with my siblings and extended family as we memorialized my mother and began to sort her personal belongings and settle her affairs. Remarkable in that I was able to travel and be at her visitation and funeral and to be helpful in limited ways with the great sorting. But it's also slow and uncomfortable and the limitations are real. I can't lift my elbows over my shoulders, I have to sleep on my back, showers, but not baths, 3 weeks of drains and their need for tending and the discomfort that goes with them. My energy and spirits have been good. I will likely wonder for the rest of my life about the synchronicity of losing my breasts and my mother the same day.
I am back in Missouri after nearly a month away. I am back in my office and delighted to be back to work. The path ahead includes continuing my treatment: radiation therapy to my chest, infusions of monoclonal antibody chemotherapy, anti estrogen therapy, and the lab tests and echocardiograms needed to watch for long term side effects of those treatments. Also ahead is unloading and sorting and finding a place for the furniture and mementos I brought back with me from my mother's home, rebuilding my flexibility and strength after surgery, reclaiming my garden, and rebuilding my business. There are similarities in these tasks--they require patience, persistence, an unwillingness to be daunted by the enormity of the projects, discernment, honesty, and the courage to let go of what is not working. I inherited these qualities from my mother and am grateful for them. May they be sufficient.
I am doing GREAT! Really well considering the circumstances.
We all have circumstances, right? For me, it's been a challenging season. Sure, I am walking through treatment for breast cancer. It's been a ride to be a family physician during a pandemic, with the need to read a lot and listen to opinions and help my patients make decisions, to do what I can to be a leader for my community, and all. I am glorying in this current opportunity to come up for air in this break in the pandemic May it be the end or at least the beginning of the end.
My mother's health has shifted in ways that have made it important for me to travel to SC whenever my own health allows. I am holding space for other members of my family who are also facing their own hard times.
The clouds of war and the threat of global climate collapse weigh heavily on me as a person and as a mother.
I am so lucky to have people who love me and who want to know how the treatment for breast cancer is going. So, as of today, here it is:
There is snow on the ground. Nearly 6 inches here in the woods of Northern Boone County. In March. Not supposed to get melting temps until Sunday, when it is forecast to be nearly 60. The winter and the spring alternating echo how I feel during this time of my treatment. A week or so of difficulty melts into feeling well.
I have come through 6 cycles of chemotherapy. I did actually really well, considering. Cycles are a good image. A week of not feeling very good: tired, unmotivated, a little itchy, sore fingers, not really excited about food, a funny change in taste, some tenderness in my mouth that really didn't like food that had much texture. Then these discomforts would gradually melt away until the third week, I felt really good. The return of energy, enthusiasm, and feeling good in my body is quite enjoyable.
My cancer is responding by getting smaller. I am convinced that for me, chemotherapy was a good choice.
Surgery is in a week. I am attempting to advocate for myself to have the pain from the procedures before the surgery managed well, but am up against a pretty big system. I am envisioning a little crack in the system that will let me through. I have seen these miracles happen and it's usually cause a visionary front line worker takes a risk, speaks up or sneaks through, and makes something happen that isn't quite policy.
Emotionally and spiritually I am doing very well, again considering. It's a cliche for a reason that cancer brings gifts. I am walking through a late spring snow. I don't like the sadness and loss that comes with facing mortality, with having big medical things to deal with, with seeing the very real problems of our medical system. I am very grateful that self-pity and bitterness have not been visitors who stayed very long when they visit. There is also a warm sweetness to appreciate in the life I have. Nothing like feeling bad to make me appreciate the days I feel good. A dear friend says I am softer. That rings with truth to me.
Complementary therapies have been central to my physical and emotional health. I have embraced fasting (both fasting mimicking diet and intermittent fasting), supplements, sauna, Hyperbaric Oxygen Therapy, EMDR, counseling Psychedelic Assisted Therapy, exercise, physical therapy, cooling of hands and feet, cannabis, craniosacral therapy, and a lot of prayer.
My practice has, so far, survived this winter. I have had far less energy to devote to my patients and many have found other places to get health care. I understand and want all of them to get exactly the very best they can. Two nurse practitioners joined my practice and have kept the fires burning when I wasn't in the office. I have been able to work 1-2 days per week and the patients who have stayed with me for that work are much appreciated. My enthusiasm for my work is intact. I am looking forward to returning to full-time work and eager to see what working with a team of advanced practice nurses will be like. I have some ideas for new services and programs. Those will have to wait for now. Like the spring it will come.
UPDATE: I got a miracle. They did exactly what I asked for regarding pain control for all of the painful parts AND said they were considering rewriting their policies for others.
Fasting: it's a thing these days. Lots of talk about fasting.
First: Fasting isn't for everyone. People who have had a journey with disordered eating probably should keep eating on a regular basis and have some support. Medical conditions can affect how well you tolerate any diet, including one that is limited. Be aware, informed, and keep your medical team in the loop.
Second: What do we even mean by the word? I can see the eye rolls from folks with lots of experience with water fasts (consuming only water for a period of hours or days) with all this talk about "fasting" when really we are eating food. I get it and wish we had better words.
Fasting: not eating, not consuming calories, typically water only or non-caloric teas
Intermittent Fasting (Time Limited Eating): Confining eating to specific times during the day. For example, eating between noon and 6PM and not consuming anything but water the rest of the day.
Juice Fasting/Cleansing: Consuming only water, teas, juices.
Fasting Mimicking Diet: Can you see the irony? It's a fast AND a diet, which means eating and fasting at the same time. Yep. It's about trying to achieve the health benefits of fasting and avoid the downsides that limit the tolerability and safety of fasting in some circumstances.
All of these ways of eating or not eating have health benefits and risks. Some have been embraced for cultural or spiritual reasons as well.
There is a rabbit warren that of articles and information and opinions about fasting and chemotherapy that can occupy many hours. I know. My footprints are there. Some references are at the end of this post.
Here is my best summary of what I found helpful.
Regarding use with chemotherapy, the most researched approach is the Fasting Mimicking Diet (FMD) which is typically:
2. 25% of the recommended calorie intake for the height and weight of the person
3. Mostly vegetables with some nuts and olives.
FMD likely decreases side effects of chemo, allows people to avoid use of steroids, and increases the effectiveness of chemo. Very preliminary studies, small numbers, and mostly by the same team of researchers. Not definitive, but I had to decide what I was going to do during my chemo which was October 2021 through February 2022. I used what we knew at the time. Very little downside to fasting: safe, cheap, likely effective.
FMD was developed to be safe to use in medical conditions in which benefits are likely if a person fasts for several days and repeatedly. Complete fasting in situations like cancer treatment, autoimmune disease, chronic illness is challenging since many people experience hunger, headache, and weakness at the beginning of the fast. In addition, fasting completely from food or caloric beverages results in weight loss which can be undermining. Specifically in cancer treatment, loss of weight can limit the ability to tolerate treatment, and can be extreme enough to be life threatening.
The researchers are asking if there is a way to get the benefits of Fasting (lower blood sugar, lower insulin levels, lower Insulin-like Growth Factors (IGF), without the extreme weight loss. How much of which kinds of food can be eaten and keep weight stable and also get the metabolic benefits?
What did my FMD look like? Well, it evolved as I learned. I personally did better when I avoided high histamine foods during my fast and for the few days after chemo, so the prescribed FMD used in the studies wouldn't work for me. I also really don't like olives and found that eating olives during a fasting day just made me feel really sad. So, I made soups from vegetables that I roasted with some olive oil, seasoned with salt and herbs, and pureed with water. I ate 2-3 cups of this soup each day. I also ate limited amounts of nuts, and some crackers I made from nuts and seeds. I found that my hunger was much stronger once I started to eat for the day, so I ate at 2PM, at 4PM, and at 6PM.
Impact of modified short-term fasting and its combination with a fasting supportive diet during chemotherapy on the incidence and severity of chemotherapy-induced toxicities in cancer patients - a controlled cross-over pilot study
Randomised controlled trial of intermittent vs continuous energy restriction during chemotherapy for early breast cancer
Fasting-mimicking diet plus chemotherapy in breast cancer treatment
Fasting mimicking diet as an adjunct to neoadjuvant chemotherapy for breast cancer in the multicentre randomized phase 2 DIRECT trial
An artichoke is a splurge for my budget, a delight to my palate, and often included in my fasts.
For years, I have been aware of the health benefits of various forms of fasting. When I discovered that I have a serious illness, I overcame decades of fear of and resistance to fasting in a moment.
I embraced my best understanding of a Fasting Mimicking Diet(FMD). Very quickly, I found I actually like fasting in this way. I also found it to be really helpful to me terms of mental clarity, better metabolic lab markers, more abundant energy, and some weight loss.
After 5 days of a FMD, I returned to a regular diet with an emphasis on vegetables and low glycemic index foods. I then embraced a FMD two days per week. Typically I fasted during my work days, because the increased energy and mental focus were welcome on those days. Benefits continued.
As chemotherapy began, inspired by some very preliminary but very promising research and supported by the nutritionist I hired to guide me, I used the FMD on the three days before and the day of my chemo infusions. This was much harder. My chemo sessions were every three weeks and resulted in me not enjoying food very much for about a week or so. The three days before the next infusion were the days when my appetite was the most normal. Limiting my food those days was a disappointment.
1. I have responded in very promising ways to the chemo with a noticeable decrease in the size of my cancer, both by physical exam and by ultrasound. Preliminary studies indicate that by fasting, I may have measurably increased my chance of Complete Pathologic Resolution (no cancer cells found at surgery) which is correlated with longer survival.
2. NORMAL white blood cell (WBC) counts throughout my chemo even without taking the WBC stimulating medication for the last three cycles. Not just "good enough to get chemo" levels, but NORMAL. Low WBC counts are associated with more serious infections during chemo. Having low WBC counts is a common reason for people to have their chemotherapy sessions delayed or discontinued. One important predictor of good outcome with chemotherapy is being able to complete the course of treatment. Getting every one of my infusions on time felt like a victory. Seeing that this one marker of the health of my immune system was normal was really reassuring, especially since I was getting treatments during the delta wave of COVID-19.
3. I had very few side effects to chemotherapy. No vomiting. No nausea. Minimal intestinal upset of any kind. No neuropathy. Moderate fatigue. My oncologist is impressed. I can't say I felt GOOD during chemo, but I had some pretty good weeks of being able to take my normal walks and be physically active.
4. I was able to forgo using dexamethasone which is typically given as a pre-med for chemo to reduce side effects. Dexamethasone is a steroid and will raise blood sugar and insulin levels. I wanted to avoid that for many reasons, but mostly cause what I am reading suggests that keeping blood sugar and insulin levels low is important in preventing and treating cancer.
5. My Hemoglobin A1C levels went from borderline to NORMAL. Not yet ideal, but I expect that with the next blood draw. I likely prevented developing diabetes, which is its own challenge and is correlated with poorer outcomes in cancer.
6. A feeling of agency. I really liked being able to do something for myself that was likely helping me be healthy. Being treated by a team of medical professionals can sometimes feel really passive. Having things I was doing to help my success helped me feel more active.
7. Loss of weight to close to my high school weight. Some of that loss was due to chemo (so not healthy), but I think I have gained that part back. My weight is now stable despite a return to a more varied diet that includes whole grains and some rare sweet treats.
It was hard. I didn't like feeling hungry so many days. I frankly worried some days at how much weight I lost in the week after a treatment. It's not for everyone. I am very glad I did it. I am already resuming a pattern of eating less on the days I am in the office, and will likely resume something similar to a 1-2 days/week FMD after recovering from surgery.
The weather is glorious.
I don't feel really bad, but I don't feel good either.
I have so much support.
This is a solitary journey.
Chemotherapy is effective medicine AND it is hard.
Round 2 of 6 cycles of chemotherapy is complete. I am looking forward to being done and also understand that completing chemo is not the same as completing treatment.
I have seen many gifts of this journey and also there are so many losses.
Grateful and grieving.