Sorry for the implied expletive but it’s accurate and reflects most people’s emotions when it comes to cancer. I don’t feel like just doing the “stand up to cancer” slogan. I’m kind of in the FU2 cancer phase right now! And the pink ribbon is so passive right now I don’t even want to cut and paste it here I need something more emblematic of a true fight. Any graphic designers want to help??!! And I need some way to vent and keep everyone in the loop, so my blog will now be my journal and therapy session. Feel free to ignore or read!
Let’s just say it hasn’t been the best summer. On top of my breast cancer diagnosis, we had to say goodbye to our beloved husky Luna who was the ultimate survivor dog. Found out this spring she’d been shot – her chest was full of buckshot, most likely from a shotgun years ago before we adopted her from a shelter in West Tennessee, and she was probably hit by a car which had caused her years of arthritis. My poor kids and husband have had a lot dumped on them in a short period of time. Today I am days away from my first treatment and honestly I’m beyond nervous, but anxious to get this thing done. It’s a dangerous balance of living in the present, enjoying every minute with family, and wishing this year would fly by. As a parent you know how much you cherish every (well not every but most) moments and so even wanting time to pass makes me feel guilty as a mom. Keeping my emotions in check is also hard since I tend to wear them on my sleeve as you all know. But having 2 active boys keeps me grounded and busy which is treatment in and of itself.
Quick background – late May 2016 on my normal screening mammogram which was a 3D mammogram this year – they found a tiny mass estimated at 5-7 mm. My sister Kathy is a 16+ year breast cancer survivor so I have been diligently checked for several years and was already seeing a breast specialist. I wasn’t really worried about the biopsy the area was so tiny that surgery could take care of it if needed. Biopsy was positive for invasive ductal carcinoma – the usual breast cancer. Again I thought – surgery – boom – done! I had already wanted a breast lift and had decided years ago if anything happened I’ll have a double mastectomy, so that’s what I did on June 28th. Tumor was slightly larger than expected (1.3 cm) and despite saying everything was clear post surgery – nothing in the lymph nodes! clear margins! – a week later I got the call “well there are some microscopic cells in the sentinel node” and “we’re not sure about the margin.” Not great, but honestly didn’t change the scope of treatment, just worried me. Eventually all the surgeons agreed the margin was clear just tiny. But clear. And they debated whether to go back and look for more lymph nodes, but no one thought that was necessary. So no more surgery – about the only thing people agreed on; more on that later.
The problem with my cancer (very different from my sister’s) is that I wasn’t just hormone positive (meaning taking tamoxifen or another pill could turn off my estrogen and progesterone and stop any future cancer growth) but I was also HER2 positive. Triple positive yippee! But that’s not good and increases my chance of recurrence by like 5 times. But since I was only stage 1 a cure was still in my reach. I’d just have to go through a YEAR of IV treatment on a drug called Herceptin that obliterates HER2 cancer. So on top of the double mastectomy I got to have a port installed under my collar-bone to save my veins. This has been probably my LEAST favorite part of the surgery. Then the kicker – you also need chemo. That was a bummer. For stage 1, I need chemo? For this tiny tumor? My kids were already asking me if I’d lose my hair. I didn’t want to look sick. But chemo? I work so hard to eat well, exercise regularly, not use toxic products, avoid carcinogens and now they want to put highly toxic liquid drugs into my veins??? Initial response – NO!!!!
Then came research on a clinical trial, multiple second opinions (my case was presented to tumor boards at St. Thomas and Duke), a fight to find consensus amongst various hospitals, and trying to decide on my best route to a cure. The emotional roller coaster was ridiculous – you should do a clinical trial! No we’ve changed our mind, do chemo. No really, you should do the clinical trial you’re a perfect candidate! Then – you may not be eligible for the trial after all because the hospital hasn’t sent in your tissue and we’re running out of time. Oh yeah that went over REAL WELL. If you worked in the pathology department or are a surgeon on my case you probably heard me say i.e. scream “an administrative delay will NOT change my course of medical treatment” and “they will hear from me” a few times. And a few teary pleas to just DO YOUR JOB. I almost pulled out the legal threats but held back and just called everyone I knew and miracle of miracles the tissue was sent. Whew. My confidence level wasn’t too high at this point, so onto Vanderbilt I went. GLADLY.
In between all the drama, I developed blood clots at the port site (don’t get me started on this), went on blood thinners (like my 87-year-old mother), and had internal bleeding which led to a second emergency surgery on July 15. That was a low point and set me back 2 weeks in recovery. Again a bummer and frustrating as I kept hearing “this is so unusual” and “this NEVER HAPPENS.” The port surgeon (again no comment) told me “you should buy lottery tickets” after telling me they had to reinstall my port because it flipped and guess what – THAT NEVER HAPPENS! Oh really? THEN STOP SAYING THAT TO ME!!!! Thank God I live 5 minutes from all my doctors. I don’t want to think what would have happened if the internal bleeding had happened on a weekend or when I couldn’t drive myself straight to the office and be in surgery within about 30 minutes. That was the LUCKY part of the summer 🙂
I eventually found a great doctor at Vanderbilt I felt comfortable with, a great facility with PRIVATE chemo rooms so I won’t be 2 feet away from the next patient, full support on doing the clinical trial from my team here in Nashville, and am now just waiting to find out if I’m in the clinical trial. Once a lab in California confirms I have HER2 positive cancer (which has already been proven but needs to be confirmed by the same lab for everyone in this national clinical trial), then I’m in. Once in, I am randomly assigned to one of 2 groups. I have a 75% chance of receiving a new, targeted immunotherapy in the study group – KADCYLA – which is a bundle of Herceptin and a very targeted type of therapy that has few side effects and a much higher quality of life and only attacks the HER2 cancer cells. The whole point of the trial is that doctors feel they’re over-treating stage 1 cancer with chemo so finding a more targeted therapy will improve women’s quality of life and be just as effective. The drug has been FDA approved for years for advanced breast cancer and they are now seeing if it’s as effective in early stage cancer. That’s what I want. Only catch is you have to take the drug every 3 weeks for the entire year. So any side effects – which are pretty limited like nausea and fatigue – may haunt me for a year. Oh and it can cause heart problems in rare cases too. Nothing about this is easy. Or risk free. But kind of cool to think I could help save other women from this drama in the future.
The other part of the clinical trial is the “standard of care” group – 25% chance I get in this group which means I get the usual treatment of 12 weeks of chemo (only 1 chemo drug though Taxol) and then just Herceptin for the rest of the year. Taxol means lots of side effects and possibly hair loss, although I’ve found some cool cold caps that can help prevent hair loss (if I can stomach freezing my scalp for hours during my treatment once a week for 12 weeks). But after the 12 weeks I’d have it easy (ha!) and just get Herceptin so it will be hard at the beginning, then easier at the end. Oh and I’m going to throw in some radiation just in case there is something lingering in my lymph nodes. Better safe than sorry! My current treatment checklist looks like this: Surgery – check. Targeted therapy/Chemo – check. Radiation – check. Oral pill for years – check. Lucky me I get every treatment known to man to cure my stage 1 cancer. (Here I need to reiterate how relieved I am to have health insurance!)
So here I wait. Doing my stretches, gaining my range of motion back in my chest and arms. Hoping I do well in the treatments, stay calm, and of course remain cancer free for the rest of my very long life. All of this time at home has me feeling sentimental about the amazing help I’ve had so far – my sisters have spent weeks in Nashville helping take care of me and the family; yummy food is delivered to my door weekly; my friends here have shown so much support for me and the entire family checking in and offering to help with all sorts of things; and I’ve heard from other friends all over the world on Facebook, texts, phone calls, etc. I am so appreciative and despite all the bad luck feel so darn lucky to have the support group that I have. My husband has been beyond patient and supportive, and my kids have somehow stayed calm, made the transition to a new middle school, and now think I’m a super hero and have beaten cancer. (I tried to tell them we should celebrate later but I’m glad they are staying positive!) All the support literally brings tears to my eyes every time I think of what everyone has done. And I haven’t even mentioned Rudolph our golden retriever who is laying on my feet as I type and stays within petting distance of me 24/7. A true therapy dog! I know I’ll be relying on this extraordinary support system over the next year so a big THANK YOU in advance 🙂 I’m also learning to ask for help and not refuse the many offers which is quite new for me. But a good change I think!
The surgery removed the cancer, now it’s time to obliterate any traces of it in my body. So next week, I look forward to saying FU2 cancer.