Hello you beautiful spirit!
Every day I wake up is a good day. I’ve had eight years of good days since my diagnosis and treatment for Inflammatory Breast Cancer, and I still appreciate it every single morning. Let me tell you my story.
In 2017 I took a trip to Hawaii. I noticed one breast was bigger than the other, and that the difference was especially visible in photographs, but I didn’t think anything of it. I live in the desert and figured it must just have something to do with the humidity. I also noticed I was tired all the time, couldn’t make it through hikes that would normally be no big deal, and I just wasn’t feeling myself. So, when I got home, I went to my GP. He diagnosed mastitis, so I took antibiotics for two weeks. After another two weeks, my breast started turning a little red. Back to GP, back on antibiotics, with a mammogram scheduled. Nothing on the mammogram, so another month passed. At this point my breast was bright red and starting to swell. GP insisted it had to be mastitis. I overruled him and went for a breast ultrasound, taking control of my own health finally. Nothing on the ultrasound but a few microscopic spots, but radiologist scheduled a biopsy anyway. Thank goodness he did. I found out I had inflammatory breast cancer when I overheard the biopsy tech yelling down the hall (prior to my biopsy) “I know what this is! I’ve never seen it but we just learned about it. It’s inflammatory breast cancer!”. Turns out he was right.
Chemotherapy was no fun, but other than food tasting horrible and losing my hair, it wasn’t too bad. Surgery itself was a breeze. My oncologist was great, and the nurses at chemo were so fantastic. Radiation, on the other hand, was the worst. I burned so badly I’m scarred from tissue damage. But that was nothing compared to the seroma and infection nightmare compounded by the radiation!
I was kept overnight in the hospital after surgery, and it’s a good thing I was. I woke up around 2am feeling wet – one of my drain holes was leaking. When I stood up, the drain fell out and about a liter of fluid just poured out of the hole. The nurses had absolutely no idea what was happening. I ended up with the never-ending seroma, needing to have it drained regularly at least three times a week. Then, infection set in. I had abscesses in my chest wall, wore a wound vacuum for six months, had three more surgeries to try to scrape out the infected tissue, and finally, finally, after a year of this mess, the wound closed.
Eight years later, I have complete adhesion of the chest wall to the bone, with no movement of the skin at all. The entire area is covered with blue and red discoloration in the square pattern of the radiation. There are divots in the skin. It is not pleasant to look at. I have a frozen shoulder, so my arm doesn’t lift above the shoulder at all. I have neuropathy in my feet from chemo and can’t feel them at all. My hair grew back, but is now almost gone in a delayed reaction to chemo. I have permanent brain fog, also from chemo. I have lymphedema in my arm and recurrent cellulitis which has required hospitalizations on several occasions. I had to retire from my teaching job because I could no longer think fast enough, or find the words quickly enough, to be effective. I have to be careful because my immune system is completely shot. My entire life changed. But, my entire mindset changed as well. Every day is a good day. I may be tired, I may be in pain, I may be foggy, but I’m here, alive, and adapting. My hobbies have changed, my life has slowed down, but I’m able now to travel and to take up other hobbies I’ve always wanted to try. No more hiking? Let’s try knitting! No more teaching? Well, public speaking is a viable alternative, as is tutoring and hands-on craft teaching. No more reading? Audiobooks! Research switched from academic to fun! Volunteering wherever I want! Gardening because I finally have time!
So for those newly diagnosed, or in treatment right now, or a year or two out, your life is forever changed. You are not the same person you were prior to diagnosis. But life is beautiful as long as you have it. Every day you wake up presents new challenges, but also new joy and new splendor. Open your eyes, open your heart, open your mind. Forget the old and embrace the new you. You are a fabulous creation of the universe and you should never forget that. As Terry Lynn says, hope always.
Beth Miller, IBC class of 2017.