Still Infusing, Still Thriving
Last updated: March 2023
I submitted my diagnosis story in 2019. I want to talk about the last two years with metastatic breast cancer, No Evidence of Active Disease (NEAD). One reason is there are so many things that have happened. The other reason is the things that did not happen.
Things that did not happen: Work
I thought in 2019 I would eventually go back to work. I was a few months NEAD. I tried working a little for a friend. I found all I was doing was working a few hours twice a week, but the toll it took was sleeping the rest of the time. I was trying to figure out a way, and praying for away, to tell my friend it was too much. Then COVID-19 hit, and my friend's business tanked. The work went away.
I began to pray and search for ways to overcome my fatigue, instead of working. I tried more supplements. Then, after months of no change, I decided to do a little research. I quit all the supplements.
Finding ways to beat the fatigue
A month later my blood results were no different. The numbers were still almost completely identical to the previous blood test when I was taking them. So, now I save over $50 a month. I am not advocating for anyone making such a change. I am just telling you about my experience. For me, supplements, even certified supplements, just don't process in my body. I tried talking to doctors, gardening, increasing my caffeine. Nothing really helped for long. Doctors's encouraged me to eat better and exercise. I talked to the nutritionist at my center and tried to change my diet. I was very discouraged and just so fatigued all the time.
The benefit of a support group
Recently, I started sharing on an app and reading other people's stories. It is a private app for people affected by cancer. Someone was sharing about going to physical therapy. I talked to my doctor and got a prescription sent over to my neighborhood Physical Therapy Institute.
What wasn't suggested: Physical Therapy
People always said you should go for a walk. You should get some exercise. I didn't feel capable of doing much, and it has been so hot this past summer. I was afraid to exercise because my balance was awful. I didn't need to get hurt or pass out from heat exhaustion. The humid heat here made just walking up the hallway a chore. I just couldn't get enough air. Don't get me wrong, physical therapy hasn't been easy. Some of the weights and exercises are quite strenuous. However, I go at my own pace and ask for less weight or repetitions when needed. I feel more confident doing exercise with professionals close by in case I have issues or questions. I am already feeling more in balance and stronger. My dizziness has improved. I feel I am also breathing better. The physical therapists also work on any muscle that gets out of whack. My neck, lumbar, and knee are the most often culprits.
The thing that is still happening: Eating and Infusing
I am also working on what I eat, and trying to eat more salad. I do not like cooked vegetables but most are good raw. I am still experimenting with food. Sometimes, I only have the energy to eat something like cheese and crackers. I don't beat myself up. I can have a salad tomorrow.
I still get an infusion of targeted therapy every third week. That week I still sleep more, have tummy issues, and I can't do as much at Physical therapy.
I am so surprised Physical Therapy was never suggested to me. I don't know that it will help any of my other issues, but I feel more self-confident than I have in the last two years at least.
Still happening: Scans and Life
I will be getting scans again soon. Each time I do that it causes some anxiety. I have a therapist and I use her. That has also improved my life and my scanxiety. I feel like more of a person and less of a lab rat all the time. Life keeps happening, my boyfriend and I broke up, my dad transitioned to the next plane, I moved to a new apartment, etc. I lean into my faith, pray and try to be a light. Overall, I feel I am finally getting into a groove and thriving where I am planted. I still struggle with side effects; fatigue, pain, and other symptoms. I am so grateful today that I am moving in a positive direction. I have Non-Alcoholic Fatty Liver Disease and Chronic Kidney disease according to blood results, but I don't have a lot of symptoms from either of those diagnoses. I am hopeful that with the exercise I am now getting, and adding things like salmon and spinach to my diet I will get those results into a better range.
What is not happening today
I have heard it said, we could all get hit by a bus tomorrow. I have also heard, with MBC you can see the bus coming from the front door. I am grateful for RIGHT NOW. I am grateful that for today, the bus is way up the street. I am grateful I believe in a higher power and a higher plane.
I pray our bus is delayed many long joyful years. May the wheels fall off our bus, the engine die, and may it soon roll over a cliff alone- in other words, may there someday be a cure!
This is my story.
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