Prior to my breast cancer diagnosis in 2018 I was considered exceptionally strong and healthy for my age (56 then) by my friends and family. Ironically, just weeks before that fated mastectomy my younger sister had said to me, “You will outlive us all.” I am the oldest of five.

At that time I was also a full-time special education teacher and I co-owned and operated our small sustainable farm with my husband where, on weekends May-September, I operated in five farmer market stands weekly to sell our products. I planned to work for a couple of more decades as our primary breadwinner due to my love for my work (and larger earning power), my comparative youth (5 years younger), and my supposed superior health. I chose to be strong as I insisted on a bilateral mastectomy as well as no reconstruction so I could get back to my regular life quickly. One sentinel node was taken on the right (side with cancer) and 3 axillary on the left (no cancer that side but my surgeon thought they looked “funny”).

I tried to get on with my life. I taught part-time time during chemo and radiation for 5 months of treatment and completed a 2000-hour yoga training course at the same time; trying to be proactive for my future health. I had just finished my second master’s degree in education in 2017 and was looking forward to finishing my career in educational administration.

NO ONE stressed that I should be on the lookout for lymphedema.

I saw an OT one time before being discharged from care at the Cancer Center and was turned over to my PCP for everything except for semi-annual check-ups with oncology to watch for recurrent cancer. My chemo experience was odd apparently. When I questioned my oncologist about how it felt for me she didn’t seem to care about my experience or helping me figure out what was going on. She told me it must be that I had fibromyalgia prior to my surgery which could have caused it.

What chemo was like for me was as I described to my doctor, “ Like I was being electrocuted” with a low-powered current that would pulse through my body for about 24 hours continuously in waves of various intensity during each cycle. Literally, I paced, exhausted because I couldn’t be still for long, all day and night. That feeling continues today at a much lesser degree of discomfort multiple times a day and night along with my post-menopausal hot flashes.

My lymphedema (diagnosed 2019) might be atypical as well as my chemo experience...but I don’t know because I struggle to find anyone with an experience like mine. I have truncal lymphedema. I also have now been diagnosed with a host of concurrent diseases including fibromyalgia and migraine headaches (diagnosed in 2020) and IBS (had for years) which I believe are all connected, or at least affect each other.

As of May of 2020, I was deemed now permanently and totally disabled primarily due to the complications of lymphedema as it is connected to my Post Mastectomy Pain Syndrome (began the day of surgery as came out of surgery writhing in pain and haven’t had a day without pain since). I have been VERY frustrated with the lack of information that my doctors have. I recently had a medical scare and I keep saying what about the lymphedema? What is its role in all this? The medical response was, “That is not lymphedema.” 

But they have no other answers and want to prescribe a pill for what they assume is the cause and send me on my way for 3 months. I am going on a FODMAP free KETO elimination plan to try to get better control of my physical symptoms. I wear some kind of compression and massage daily as well as using taping as often as my skin will tolerate it to help the draining. I have done 6 weeks of decongestive therapy and continue with bi-weekly check-ins with my OT.

I found LE&RN because of Kathy Bates. I began to search for more I could do to take back control of my health and found Kathy on YouTube. I cried and searched for more from her regarding lymphedema. I was so happy she is willing to be a champion for the rest of us. I connected with her as she seems to understand my pain and struggle like no one else; even saying some of the same things I have! Last week I cried when thought I was dying of metastatic breast cancer and this week I cried because I am beginning to understand the impact of lymphedema on the rest of my life. I am not sure which is worse.