I originally found a lump in my left breast way back in 2012. My mom was not well, nothing serious (so we thought) but I dutifully took her shopping, completed her errands, and chores. I am 56 years old. My grandmother died at 56 from oat cell cancer, liver cancer, and complications of diabetes. I was 15 at the time and I loved my grandmother. I was so sad.
Back to mom. She fell at home. It took her a few hours to “butt-walk” from the garage back up two steps into the house through the kitchen and living room to get to the phone to call me at 9:00 on a Saturday night while I was visiting my daughter, son-in-law, and grandson. I told her my boyfriend and I would be there in 20 minutes. We made it in 19. Mom was overweight, so we had to nudge a blanket under her butt and lift her onto the couch. I went to the local fire department and got her a walker (they lend them out for any length of time for free-how wonderful). She was fine until Monday morning when she called me again to say she collapsed with the walker falling on top of her. My boyfriend and I were there within 15 minutes. My mom asked if this was normal. I said it wasn’t. She asked if she should go to the hospital and we both told her she should. I called EMS after we blanket-lifted her back onto the couch again. EMS came out, did their thing, and carted her off. We followed. The first blood draw came back with the comment, “We think you have Leukemia.” The further tests confirmed she had acute myeloid leukemia. It was hard to tell mom she was going to die and there was nothing they could do. She took it pretty well, I guess. I watched her slip away from me over the next two days. After we smuggled her dog into the hospital for one last visit, mom fell into a coma. She quietly passed away two days later. My boyfriend was holding her hand as she died. I think of mom every day waiting for the phone to ring.
Back to me. After mom was gone, my friend’s and neighbors pressed me to get my boob’s checked out. I didn’t have any insurance! We found a free clinic and the doctor there gave me the once over and asked why I waited so long. They set me up with an appointment to go to a doctor who sent me to another doctor, a mammogram, a chest x-ray, and ultrasounds. I was also enrolled in the Breast and Cervical Cancer Prevention and Treatment Act (BCCPTP) under Title XV. I NOW HAD INSURANCE! Guess what? I had my worst fears confirmed. My thought of blocked milk ducts were so wrong. I have invasive ductal carcinoma grade 3, stage IIIA (T4b N1 Mx), Her2neu positive, ER/PR negative with a metastatic carcinoma in the axilla lymph nodes. Great. I’ve completed five rounds of neoadjuvant chemotherapy with TCH (Taxotere, Carboplatin and Hercepin along with a Benadryl push because I had a reaction at my second round of chemo. No biggie.). One more chemo to go. Then it’s on to the surgery part while staying on Herceptin until June 2014. Herceptin the wonder drug! Wait till I tell you about the clinical trials!
Mastectomy next. What? Why not a lumpectomy? I thought the chemo would shrink the tumors to nothing? You really have to lop off the whole boob? REALLY? HOLY CRAP! I love my 36 C girls the way they are! Expanders with a boob job later? I guess, if that’s my only option to have two boobies. After talking to my 71 year old aunt (mom’s sister) who just finished her double mastectomy, chemo, and radiation without the benefits of reconstruction, I chose to research this a bit more.
TRAM Flap? Cutting muscle but getting a tummy tuck at the same time. Possibility. DIEP Flap? Much better, no muscle cutting, nerve attachment, longer recovery time, possible complications, sounds like a much better option to use my own muscle and tissue to fashion a new breast that looks and feels natural and not a silicon or saline filled lump that could leak as well as look and hang funny. If I use what God gave me, maybe it will shrink or grow as I gain or lose weight. I used to weigh 110 lbs soaking wet, but I went up to 125 as I aged, and after menopause I hit 150-155. Now I’m at 165 with the lovely steroid I get at chemo. I occasionally “moo” since I feel like a cow. I’m going to get a second opinion at the University of Michigan Hospital in Ann Arbor. It can’t hurt, right? DIEP reconstruction involves microsurgery, preferably with a two doctor team. Hope Medicaid will pay for this. They have paid for everything else. My only option. I lost my job due to downsizing in 2009. I’ve worked since but can’t find a permanent full time job with benefits. Part-time it is for now and coping with chemo side effects.
My side effects: lost my hair (given), skin on my hands and feet peeled like a bad sunburn (yes, they’re tender), got chemo mouth (thrush) which we cured with Fluconazole in about a week (couldn’t eat for four days so I dropped four lbs and quickly gained them back), I have chemo brain (can’t remember things, oh well, suffer with me), I get a little nausea, food tastes yucky a few days after I get chemo so I change my diet to Boost, applesauce, yogurt, etc, and eat just to get the calories even though food tastes nasty at times. We went to the Golden Corral (buffet restaurant) and I ate one bite of almost everything. I ended up with four plates of food because I went back up to get seconds of stuff that tasted good. Yeah for Golden Corral!
I also went for genetic testing. My half-brother who was two years younger than me died of skin cancer and other complications at 43. My dad beat prostate cancer last year. One of my great aunts (grandma’s sister) died of breast cancer in her 70’s, a third sister had breast cancer twice and a gynecological cancer and died in her 80’s. My half-sister has a gynecological cancer and endometriosis. My aunt (mom’s sister) is a bad ass warrior and I’m following in her footsteps. My older daughter had both of her grandmother’s died from acute myeloid leukemia. This is why I went for genetic testing. Too many cancers on my side of the family. I get the results in a few weeks.
The clinical trials: I was in two different trials. Advanced Hair Solutions gave me a solution I put on my eyebrows so they wouldn’t fall out. IT WORKED! I lost the hair on my head, but I HAVE EYEBROWS! Check out CureLauncer.com and ask for Dave. He’s president and co-founder of Cure Launcher (and a personal friend – how lucky am I). This is a company (non-profit, I think) that matches patients with clinical trials all over the country at no charge to the patients! He’s a sweetie! I was also on another trial for an anti-toxicity drug for my heart (I have a mild case fd mitral valve prolapse, which is a leaky heart valve). I got kicked off when my second 2D Echocardiogram came back with too much of a change. Oh, well. It was nice while it lasted. They will still track me for as long as I want them to over the next year. It can’t hurt to have an extra team watching over me!
So as I research my best treatment options, I’d like to get opinions, prayers, thoughts, and suggestions from my new friends on this website. I’ll try to keep you updated on my progress.
That’s my story and I’m sticking to it. I’m a bad ass warrior and I own this cancer, I own my power over it and I’m going to beat it down til it’s gone!
I FIGHT LIKE A GIRL!
P.S. My profile pic is one of the last pictures I took of myself before I buzzed my hair off. We made the buzzing a family event. One of my close friends is a hairdresser and cut my hair to a half inch length, cut my older daughter’s long curly hair into a beautifully shaped one-sided bob, and gave my two year old grandson Kaius his first hair cut. What an afternoon! We had fun doing it!
Oh, and I also make lightweight cotton head turbans for those who don’t go out “naked.” My “pay it forward” project was to make 100 turbans and donate them to the Wilson Cancer Center here at Beaumont Hospital in Troy where I receive treatment. I’ve surpassed that goal, had more material donated to me, so I figured I’d one up it. If this is going to take a year of time out of my life, I’m going to make one turban for every day of that year. 200 turbans to go, I’ve already made and donated 165 of them! Sewing is my passion and I’m putting it to good use!
The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.