This battle didn't start of easy ... as I experienced a collapsed lung from the biopsy and was in the hospital for 4 days until it repaired itself. No fun and OMG that chest tube was PAINFUL!
Getting news like "Your cancer is back and it's Stage IV" is never easy. When you are about to move 2,000 miles away ... it's even harder. So much for the Goodbye I'd planned for all of my amazing friends in Milwaukee. So much for finishing the rugby season with the amazing women of Syclla Rugby, Instead my body and my health took over and it was determining the path.
For those of you new to my journey here's a few things to catch you up. I moved to Milwaukee in 2012 and Heather joined me in 2013. In early 2014, we learned I had breast cancer ... sadly celebrating being a third-generation survivor (maternal grandma, mother, maternal aunt, and me). I test negative for BRCA, which is the most commonly known genetic mutation that increases the likelihood for breast cancer. Basically, they believe I have a genetic mutation they haven't found yet.
I work at GE Healthcare, and am passionate about the healthcare industry. My parents were MD's and I grew up in a hospital. I never wanted to be a clinician, but always wanted to make a difference in the industry. I've spent nearly my whole career in the software side of the healthcare industry. I am blessed to say that I truly love what I do! I'm also sad to say, now more than ever I see the dyer need to fix the healthcare system. There are so many opportunities to improve the efficiencies of healthcare, especially for those with lifetime diseases like cancer (diabetes, heart disease, etc,). If you've had someone in the hospital lately, I'm sure you know what I mean.
I love sports ... playing, coaching, and watching them. In my hay day I was an avid athlete completing in; downhill ski racing, rugby, ice hockey, soccer, softball, swimming, cross country, gymnastics, etc. I grew up in Minnesota and went to college in Vermont. I attended a high school for olympic hopefuls in Vermont. I discovered rugby in college. I played rugby until my body thought otherwise after a career ending neck injury. Since then I have refereed or coached. Most recently I was coaching a DII women's club team in Milwaukee, Scylla. Prior to that, I coached Seattle Breakers (now Saracens) D1 women's club and the Boston University Women D1 college. I always knew what a special community rugby was ... but after my cancer diagnosed I knew it in a new an different way.
I am married to an amazing partner, Heather Dooley. Heather is from Seattle and we are blessed to be back living in an area where we have so much extended family. I lost my mother in 2012, to breast cancer. My sister lives in Texas. My brother and my two nephews live in Vermont. My dad lives in South Carolina. We may be spread out geographically, but they have been wonderful to support me.
Earlier in April, my dad (John) and Heather's dad (Dennis) flew to Milwaukee last minute to help us with our move. When I lung collapsed after a slow leak from my biopsy, I was advised not to fly for 2-3 weeks. Thing was, I was flying to move back to Seattle in 10 days. So ... flight cancelled, car shipment cancelled, and I'm driving. Dennis, Dad (John), and I headed out on what we thought would be a 4 day road trip. We did it in 3. As I arrived in Seattle, the movers were arriving in Milwaukee to pack our condo. Heather held down the fort in Milwaukee. Our amazing friends Alyson and Eric hosted Heather. Our incredible friends Butter, Crystal, and Doc helped us make sure everything with our condo was ready for our new renters and the movers. It was a whirl-wind month of April, but we made it out of Milwaukee and have settled into Seattle.
Work ... I transferred back to Seattle with my business at GE Healthcare. Heather was also able to transfer with her job at GE Healthcare. We are blessed to work for such an amazing company that has supported us so well through this challenging time. We both continue to work full time and enjoy going into my old office in downtown Seattle when our schedules allow (many early morning meetings working for a global company from this coast).
Play ... I'm playing softball Sunday's. It's been 3 years since I did, but it's slowing coming back to me ... and I'm having a blast!
On May 6th, I met with my new clinical team at Seattle Cancer Care Alliance (SCCA). My new oncologist is Dr. Georgiana Ellis. While I miss Dr. Flej at Aurora in Milwaukee, it's amazing to be treated at a facility that specializes in cancer. It's hard to explain, but knowing that everyone is there to treat patients with cancer ... or they are a cancer patient, or they are supporting a cancer patient. Little things to most like a blood draw become so much easier when you are at a facility that starts the conversation with ... Do you have a port or pic-line? Hallelujah!
My intended new treatment plan ...
1) Oral chemo - 21 day cycles with 14 days of meds and 7 days off
2) IV chemo - 21 day cycles with weekly infusions week 1 and 2 and week 3 off
3) IV med - monthly to pull calcium from blood and re-insert into bone
Things was ... my insurance denied #2. So instead I've started #1, and SCAA is appealing #2. They will start #3 in a few weeks. Good news ... I have more freedom to travel on oral meds. Bad news ... I'm not getting the full treatment my Dr's wishes for my situation.Even more annoying, they want me to take a different med that costs more $ and has worse side effects. Ugh! Deep breaths ... deep breaths.
I'm also looking to take advantage of other complimentary therapies to compliment the chemo. Being back in the PNW really opens up expertise in this area that just wasn't readily available and appreciated in WI.
One of the complimentary therapies is drastic changes to my diet. I need to cut out inflammatory foods. Sadly, that's pretty much anything that tastes good and indulgent. I am happy to say, it's much easier emotionally when you are fighting for your life -vs- trying to loose a few pounds. What I've had to say goodbye to; alcohol, dairy (except eggs), nearly all sugars (thankfully not fruit), and no white grains and when I get brown rice or ancient grains like quinoa and couscous (small portions infrequently). What I now enjoy as my new normal; veggies (minus potatoes), fruits, and clean meats without antibiotics (what I have adopted from my dear fried Butter to be know as 'elite meats').
2 weeks ago I started taking Capecitabine (Xeloda). I take 1800 mg 2x day for 14 days. It's 5 pills each time, annoying. Anyways, I completed my first round yesterday and today am enjoying day 1 (of 7) off. So far, it's been pretty uneventful. I remembered to take all of my meds. I have a few minor side effects, but nothing really bad. I travelled for work last week and was able to stay on track for my meds and stay on my nutrition plan.
To wrap up this inaugural post from Chapter 2 ...
- We are happily back in Seattle
- I've started treatment and am hopeful new treatment is in my future (after we win my appeal for the 2nd chemo)
- While I recognize the severity of a Stage IV diagnosis, I am determined to do what I can to slow down the growth of my cancer
- I am thankful of the rapid advancement with cancer and hopeful future trials and treatment options will be available for my type of breast cancer. Come on clinical trials and pharma companies (can't believe I'm supporting them) ... bring on the immuno-therapies and cures. We know you can do it!