#MyLeftBoob #BreastCancer Chronicles: What Mark Will You Leave?

Forgive me followers, for I have sinned. It’s been six months since my last confession and me and #MyLeftBoob have been super busy! I recently opened up a new children’s art studio and relaunched my CT Buzz Media business all in the last two months! I’ve received several emails recently from people asking me if everything is okay? Am I still here? Am I still “good?” Yes, I am still here and I’m trying my best to be “good,” but I have been in a lot of pain….and to a lot of doctors.  More on that later….

hosp velvetThis photo was taken last month in the elevator of Danbury Hospital after getting the “all clear” from my Radiologist! I go to both Sloan Kettering and Danbury Hospital to be double sure that the evil C word remains at bay!

For those just joining me, I’m a survivor of a very rare and aggressive type of breast cancer called Metaplastic Carcinoma (MpBC). On January 28, 2015, I found a lump while dying my hair. Nobody in my family has had cancer, I’m not a smoker and was low risk but I still got cancer….not from anything I did or ate or inherited (because if that was true why didn’t anyone else in my family get it?), just because people get cancer. It happens. And this type? They don’t know much about it. It was only recently discovered in 2000 and is often times chemo resistant. Not a lot of clinical trials have been done so yes, it’s pretty scary.

 

On Feb. 4, 2015, World Cancer Day, after a whirlwind week of biopsies, mammograms, ultrasounds, blood work and testing, my doctor told me, over the phone, that the lump I found in my left breast was cancer. Cue feeling of being kicked in the gut, having the breath knocked out of you.

On Feb. 17, 2015 I had the first of two lumpectomies to remove the 2 cm. tumor (stage 2a, then later changed to stage 1b). I thought I’d only have to have surgery and radiation and be done, but after the biopsy my doctor told me I had a “very rare and aggressive type of cancer only 1% of women are diagnosed with called ‘Metaplastic Carcinoma.’” Not only that, I’m also Triple Negative which only occurs in 15% of women— double whammy. Both of these types have a higher recurrence rate than other cancers and require very aggressive treatment and careful follow-up.

This February 17th will be three years since they took the cancer out of me and the day I will hopefully celebrate three years being cancer free. Why do I say “hopefully?” Because tomorrow I go to Sloan Kettering Cancer Center in New York for a bone scan and hopefully I will get good results. Hopefully they will tell me this terrible pain I’ve been feeling in my back, elbows, knees, knuckles, collarbone and even my toes, is just early onset arthritis from red devil (ACT) chemo after effects and nothing more. I never thought I’d pray to get a painful disease like arthritis, but it’s better than the alternative.

I write this blog post at 2:00 a.m. when I should be sleeping. But, as many cancer survivors and patients know, sometimes it’s impossible to stop the crippling thoughts from swirling around in your brain.

I write this feeling guilty that I’m having a bit of a pity party from this ongoing pain after learning today that one of my fellow cancer warriors has gone up in glory after a brave fight. Every time this happens, there have been about six in the three years I’ve been on this roller coaster ride, I get a panic attack and can’t sleep. I feel awful that another family has to live without their loved one who was so good, so kind, so full of life and faith when there are criminals, murderers and pedophiles walking the streets. It’s so unfair. I wonder why them and not me? I don’t have an answer but when I receive letters like the ones below, I know I am here for a purpose.

 

 

“Hello Wendy. My name is Hxxxxx. Hope this email finds you well and stronger than ever. 8 months ago my mother died from metaplastic breast cancer at the age of 43. I came across your blog while I’m in bed unable to sleep, thinking of my mom and her illness. She gave a good fight. But still couldn’t help to find out if they found something out there to treat women like her, as she was chemo resistant to various types of treatment. 
What I’m trying to say is, as soon as I read some of your words I could not help but email you and make sure you’re doing okay, still strong and that you are an inspiration to your family and all the people around you. God bless you.” 
TEARS.
I am so sorry for your loss and will try my best to be an inspiration to those around me, H. I really appreciate the reminder. I hope that you find the answers that you need and the ones that give you some sense of peace. Rest assured, there are doctors and scientists working hard to find out more about this awful disease and in the meantime I will do my best to play a part by being the voice of those who can no longer speak.
“My momma was diagnosed on 10/23/17. My mom has TNMpBC, double bi lateral mastectomy stage 2a. I am looking for a group of women who have gone through this treatment since there is little information. Could you share your treatment plan and stage with me? I am still in shock and worried. Everything I have been reading says the cancer can come back within the first 5 years.”

MORE TEARS.

Yes, it can come back. “Metaplastic” means “change in form” and that’s why when people ask me what my treatment was and question why I “just” had two lumpectomies as one shamanic “healer” recently said, I explain to them that even if I had a mastectomy, it can still come back to the lungs, skin and/or bones.

Yes, I just had five surgeries, just 16 weeks of dose dense red devil chemo, just had to lose all my hair, tell my kids and family, just felt nauseous 24/7, on the verge of death, like I had the flu and got hit by a Mack truck at the same time— or four months straight, followed by just 30 rounds of radiation treatment, just lots of pain and tons of complications and live with the PTSD, early onset menopause, early onset arthritis, surgery pain and other pain that follows. Yup. That’s all. Easy peasy! For a shamanic healer, this woman was far from intuitive.

And the biggest side effect of them all— fear of recurrence. And that is why I am wide awake at 2:38 a.m. because these are the thoughts that keep me up at night, on the eve of my bone scan.

When I told family and a few friends I’ve been going through this they were shocked and asked why have I not been talking about it? Because it stinks. It ruins my day and keeps me in bed sometimes until late in the day because it literally hurts to get up. I don’t want to complain (who wants to hear it?) but I feel like I’ve been stuck in this place for so long and just want to get on with my life, stop being in pain, stop having anxiety attacks, lose the weight, feel good enough to exercise and be able to sleep normally again.

This blog was always supposed to be inspirational and going through what I’ve been going through, I could not find a way to be inspiring, so that is why I haven’t written. But now, after the letters I received, I’m being real with the hope that someone reading this will be helped by my “laying it all out on the table,” so they won’t feel so alone….like how I felt when none of my nurses at Danbury Hospital had ever heard of MpBC….and the American Cancer Society couldn’t find anyone on the eastern side of the U.S. who had it….and how I felt like the only one….until I found a great support group.  I hope that if you have MpBC that you will find this blog educational, inspirational, funny (sorry, not today, but soon!) and helpful.

After dealing with horrible people and difficult situations this past week, while the rest of my social media news feed was busy bashing the president, bashing each other’s social media groups, bashing my new art studio I just opened two months ago (because they didn’t like the “idea” of paint night- like I invented it?), while business owners were busy badmouthing each other and/or trying to steal each other’s customers and their competitor’s ideas, there were people busy fighting for my life…..and dealing with this pain….and worrying about this next test tomorrow (now today).

I don’t know if it’s me losing patience for people because I have stared death in the face and realized that life is way too short for arguments, always having to be “right” and too much negativity, or if people are just much more cranky and argumentative lately, but in the last six months I’ve lost friends and family members over seemingly stupid stuff and have learned that’s okay.

I’ve learned that I can’t wait around for things to get done, or money to come, or people to catch up with me on the great business idea I have, or expansion plans. I have learned to rely on my faith, myself and immediate family only. In the end it’s all that matters. That and the legacy you leave when it’s your time. When people speak your name will they say you were sarcastic, competitive or argumentative or “someone you wouldn’t want to cross?” What mark will you leave?

When someone speaks my name will they remember me as a breast cancer and children’s advocate? As someone who lived to help others through the power of the arts and through my writing? As someone who tried my best to set a good example and pass on my love of service to my kids? I certainly hope so. And hope it won’t be until the ripe old age of 102 with three kids, their spouses and 13 grandchildren at my Thanksgiving table.

So if you happen to think of it at 9:30 a.m. on Wednesday, EST, feel free to send up some prayers and positive vibes that the bone scan will come back all clear and for wisdom for the doctors to know next steps to take to help me get over this hurdle and keep moving forward.

In the words of Maria Fowler’s army of MpBC advocates….

“Stay Strong. Stay Positive.
Keep Searching. Be Hopeful.”

If you or a loved one has been diagnosed with Metaplastic Carcinoma (MpBC), try not to panic and definitely don’t check “Dr. Google.” There is a lot of outdated info on there with alarming statistics. I know women who are surviving and thriving ten years later and that’s what what I focus on. And here I am almost three years out, almost “home free.”

The biggest thing I’ve learned though all of this is that everyone’s cancer is different. It depends on what stage, the person’s type, if it spread (mine didn’t, thankfully) and a number of other factors.

Ask your oncologist to help find you a support group for people with MpBC or join one on Facebook here. (You can only join if you have MpBC or are related to, or a caregiver for someone who does.)

I also recommend checking out the Metaplastic Breast Cancer Foundation’s website, started by the wonderful Maria Fowler who I had the pleasure of knowing and who helped me tremendously when I was first diagnosed, but sadly, lost her life due to this horrible disease.

May Maria, Suzette and the rest of the Metaplastic Breast Cancer angels’ spirits live on in those of us with “boots on the ground,” dedicated and determined to keep fighting the good fight.

Peace.

~Wendy 🙂

wendyannmitchell@live.com