I’ve been a little on the quiet side as far as updates are concerned. Partly it’s because there hasn’t been much to report but also due to the fact that I’ve felt a little like a Debbie Downer lately. My emotions have been all over the spectrum. I’ve posted photos of me going out with friends and physically I look the best I’ve looked in a long time which is great but on the inside it’s been so much more complicated. My sister sent me this which I found to be a perfect descriptor of what I’m dealing with and hope it helps you to better understand me too.
There are a few side effects from the surgeries that I don’t believe I’ve mentioned but of course I get to experience them. The one that particularly bothers me the most is the stinging pain and numbness in the back of the arms which lead into the breast tissue. This stems from the removal of the lymph nodes. The doctor had to cut and/or move the nerves in order to access those lymph nodes. It’s taking a while to get feeling back which may never be 100% but the pain is pretty constant. One additional note on the subject of the lymph node removal is that I can never again have my blood pressure taken using the upper arm on either side. Once lymph nodes are removed, taking blood pressure on the upper arm can cause a condition called “lymphedema” which is swelling of the lymph nodes. From now on, they can only use my lower arm for blood pressure. I had no idea this was even a thing.
Aside from the arm pains, I also have pretty much lost all sensation and feeling in my breast tissue. This is a hard one to discuss but it’s the reality of having a bilateral mastectomy. I don’t know how else to explain it other than not being able to feel a whole lot in my breasts. It will sound strange that this is even possible but I will feel itchy on my breast and attempt to scratch it but I can’t feel my own fingers. I don’t know how that’s even possible but it is and it’s the grossest feeling. It was explained to me from the very beginning but you can never grasp the reality of it until you are in it, that I have lost body parts that I’ll never get back again. People look at you and think, “Everything looks great, she looks happy and her body looks fantastic” but what they don’t understand is how it feels. When you no longer feel your breasts, it doesn’t matter how amazing you look in the mirror. Even when I finally get the expanders exchanged for implants I will never be able to feel that part of my body again. That changes everything.
On news of the implant surgery, it has been tentatively scheduled for June 24, pending a final decision from the oncologist. Once we know I won’t need chemo, the surgery can take place and I’m beyond ready. I’ve been ready. Patience is a virtue I don’t have. This experience has tested that even more.
I saw the breast surgeon on Thursday for a follow up. Everything I’m dealing with is all “normal”, whatever that means anymore. The doctor told me multiple times that I look great which I’m so appreciative of. Still, nothing is normal to me. I’ll only need to see her once every six months for the next two years for physical exams then once a year for the rest of my life.
As I write this I’m anxiously awaiting my appointment with the oncologist on Tuesday. When I last saw her she ordered a chest X-ray (not sure what for), had bloodwork drawn to measure my hormone levels (they’re looking at the level of estrogen in my body which I’ll explain more later) and she did one additional test to determine what the chance of long term recurrence of cancer is. All of the tests she’d already done were in my favor but if it’s determined that the rate of return is high then she would recommend chemotherapy. I called yesterday to verify that the test results were received and when I did the receptionist told me I need to do additional lab work before my appointment. Hearing that set alarm bells off in my head. It’s a scary feeling to be constantly waiting on test results, to wonder if the cancer is still there or will be coming back, to not know if you’ll need chemo, lose your hair, not be able to continue living a normal life. All of the unknowns are what are causing me so much stress and anxiety. These are the things that nobody ever really talks about which is exactly WHY I’m writing about it.
A quick note on estrogen levels: Breast cancer cells have receptors that allow them to use the hormone estrogen to grow. Treatment with anti-estrogen hormone therapy can block the growth of the cancer cells, which is why I’ll be taking anti-estrogen pills for the next five years. To be honest, I wish I’d never taken the birth control pill. Something else I learned from my breast surgeon is that estrogen tends to store itself in fat cells so that more obese one is, the more estrogen they tend to produce and store in their fat. Why isn’t this taught to kids in school? Why isn’t this information made abundantly clear by a doctor prescribing birth control pills to women? Putting someone on the pill and expecting them to read and understand all the tiny fine print that comes with the pills doesn’t seem right. It’s kind of like the commercials where they say, “Take this drug for cancer but taking this drug could knowingly cause cancer.” 🤦🏼♀️
Before I found out I had breast cancer, I was preparing to move to Nashville, a city I’ve loved and dreamed of living in for the last six years. I was ready to get here, jump right into looking for a job in the music industry where I knew I’d thrive, and be around people who “get me” in every sense of the word. I’ve never felt so at home, like I belonged somewhere the way I do in Nashville. I began looking for employment immediately upon arrival but that came to a complete standstill within a month after I arrived as I navigated my way through the Tennessee healthcare system, applying for medical insurance which I’d managed to go without during the five years I was living in Florida because it was less expensive to just pay cash, and researching doctors. Healthcare can be like a big black hole if you’re not careful. I’m blessed that I had several recommendations which led me to my amazing team of doctors.
I’m lucky in that I’ve had a few steady people in my life who’ve remained by my side through this whole ordeal. These are the ones who don’t always have to say just the right thing (everything’s going to be OK). They listen to my tears, comfort me, ask me lots of questions, HEAR me, make me laugh when I’m sad and love me anyway. They’re the people who consistently check on me, knowing full well that it might be one of my bad days, but do so anyway because that’s what you do for the people you love. For this I’m grateful.
I pray you never have to experience this nasty word cancer firsthand. I never thought this would be my plight. I didn’t want to become the face of cancer but here I am spilling my guts to family, friends, colleagues and strangers. I simply want people to understand ME and the process that cancer patients and survivors go through. I am lucky to be able to say that I’m a survivor. I understand that people have had it much worse than I do. I was blessed to find my breast cancer early and to be able to strike fast. There are many who haven’t had that and have to suffer much worse than me. I pray for them everyday as I pray for my own mental and physical health.
Continued prayers are always welcome and greatly appreciated. Knowing how many people have prayed for me, taken the time to send a note, text, phone call, gift or word through my sister has helped to lift me up so THANK YOU. I am honored. God bless you all.
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