As summer drew to a close, so did chemo. Again. This time the champagne and bubble-blowing were replaced by anxiety. We all had the same questions. Was the second blend of chemo effective? Sustainable? I began to pick up on a discord between my two doctors...the surgeon would not operate if my response was not complete. She held firm that the oncologist would need to find something else to try. The oncologist was in favor of a more aggressive approach to surgery. If the cancerous web still had a footprint, just cut more. This was not like two pediatricians disputing over when to introduce baby's first rice mush...this was major life or death stuff.
I began tuning in to conversations on my IBC Support Group FaceBook page. Threads about a select few IBC specialists throughout the country, but especially MDAnderson in Houston. The only hospital with an entire center dedicated to researching and treating IBC specifically (The Morgan Welch Inflammatory Breast Cancer Clinic). This wasn't the first I'd heard about MDAnderson...over the months, several close friends and family members had suggested treatment there. I had maintained that I was getting first class care at Cancer Care Northwest, but if the time came to seek another opinion, I would go. The time had come.
Gosh, knowing and doing are two different things, aren't they? For the last eight months, I had been told where to go, when to be there. I was exhausted from almost a year of hard chemotherapy. Did I have the physical and mental energy to now take my treatment plan into my own hands? I didn't even know how to start. I was so overwhelmed. Thankfully, my mom recognized this and took the first step for me. Internet search: MDAnderson...locate "contact us" phone number...place call. Duh. It seems so simple now. But at the time, it. was. Everest.
My first call back from MDAnderson went like this:
Are you currently in treatment?
Is it working?
In several months we can get you in for a second opinion.
I was embarrassed. Discouraged. Why hadn't I called sooner? Why had I called at all?
A second call followed shortly.
A nurse reviewed your case. Inflammatory Breast Cancer? Can you be here next week?
Suddenly there were forms to fill out, files to gather, test results and samples to request. I muddled through the conversations with my doctors in Spokane. We need to start seeing other people. The surgeon, already anticipating that I would need additional chemo, was encouraging. My oncologist, skeptical.
I learned that a "second opinion" meant the new team would merely review my records and my treatment and offer a thumbs up or a thumbs down. To find out if I should, for example, switch to a new chemotherapy, I needed to check the Transfer of Care box.
MDAnderson set up a full first day of appointments, and gave guidance to stay the rest of that week for follow ups or tests. I contacted my friend Celeste, who lives near Houston. We arranged for Jason and I to stay with her and borrow an extra vehicle. With family helping book tickets, Jason's work accommodating extra time off, my dad on retirement and free for childcare, insurance approved...everything fell into place. Everything except me.
I had to finally face the seriousness of my cancer. I don't have a regular get-treated-near-home cancer. Or even an occasional-trip-to-Seattle-isn't-so-bad cancer. It is a big, ugly, fly-across-the-country-to-see-the-specialists cancer. I was so afraid that the doctor's at MDAnderson would see something my doctors had missed. I was afraid they would tell me I was dying.
The medical district feels like another city within Houston, with high-rises lining the streets, each splashed with a hospital name in giant letters. There was traffic...buses, trolleys, ambulances, nurses and assistants arriving to start their day. The new patient packet recommended comfy clothes, an extra sweater, maybe a blanket, snacks, books, phone charger...the only thing we left home was the tent. It was going to be a long day.
The "clinic" went like this:
Somewhere, behind the "curtain", the medical oncologist, breast surgeon, and radiation oncologist sat together. A physician's assistant was assigned to be the expert on my case. She had studied my imaging--previous results and the ones from earlier that day. She had read through the files from Cancer Care Northwest. She did a physical exam, and interviewed us about my original symptoms and the last nine months of treatment. Then she left to present my case to the team of doctors. One at a time, they entered the room to conduct their own physical exam and offer their suggestion for my treatment. I remember those conversations sort of the same way I remember viewing Titanic in theaters...I know I was there. I remember All The Tears. But what happened before we got to the iceberg? The good news was my diagnosis was not more serious than we originally thought.
I guess I went to Houston hoping for a slam-dunk back-up plan in case my surgeon in Spokane still wasn't willing to operate in two weeks. I don't know why I didn't consider what came next...
The surgeon told us she had an opening to perform my bilateral mastectomy on Wednesday. This was Thursday. They also wanted me to continue on at MDAnderson for radiation. The medical oncologist--the Closer--talked of experience and research and specialized knowledge, and even went so far as to say if I were to be treated at MDAnderson, I would be cured. I hated him for promising this.
In an effort to be more spa than hospital, the clinic provided a white robe. I sat for hours in that too-small robe, feeling utterly un-zen-like, as Jason and I weighed it all. It's like a game show...the worst possible game show ever. Which door had the prize? Which choice gave me the best chance at living? I'm sure you're reading this and thinking; Sister. The choice is obvious. Go with the best. But it wasn't that simple for my Mama-Heart. In Eastern Washington I had my village. I had wiggly toddler snuggles, my mom tucking me in at night. Janel's chicken soup and Dad's Alaskan salmon. Relaxed nights of laughter with Mitch and Diane. Sweat pants and wine with Josh and Sara. I had the Pink Door House with my husband's strong embrace, and mystery love-filled casseroles from the MOPS women in Moses Lake. All of these things made me feel less afraid every day. There is healing in that. Was I brave enough to choose surgery and radiation out from under this blanket?
We decided to stay in Houston. We scheduled surgery for Wednesday morning.
I'd like to say we went back to Celeste's, spent the weekend getting plenty of rest, and checked in Wednesday morning as scheduled. But the truth is, at this point I went into a Tail Spin. I left the messages cancelling my appointments in Spokane. Check-up with my oncologist. Herceptin and perjeta infusion. My mastectomy. The surgeon from Spokane called back. She talked about healing and the risks of travel and being away from my family. All concerns that were already on my heart. I re-scheduled my mastectomy in Spokane. Now I had two mastectomies scheduled.
No closer to making a decision, I bellied up to dinner with Jason, Celeste, and her husband. I soon found myself with a tortilla on my plate and a glass of wine in my hand. I was supposed to be avoiding carbs for some pre-op testing in the morning. Maybe deep down I had made a choice and felt the need to commit.
The next morning I cancelled my pre-op appointments and surgery at MDAnderson. We spent the rest of the day as tourists. That evening the surgeon from MDAnderson called. She was calming, intelligent, empathetic. The waters were muddied again. By now, I just couldn't deal. Very rarely, I have allowed myself to feel that it's all unfair. On that Friday night in Houston, I opened the windows and let that blow in like field dust. It's not fair that I have to make this choice. It's not fair that I could die no matter what I choose. None of this is fair.
I spent the rest of the night sharing wine and belly laughter with Celeste.
Saturday morning I got another call. My uncle is a doctor at Baylor in Houston. He understands my cancer--better than I do. He knows of the doctors at MDAnderson and what they're capable of. He said to me, the weeks you spend away from your kids right now are an investment towards having years to spend with them. This resonated. I finally made a choice that I was at peace with. Monday I called both treatment centers. I cancelled the surgery in Spokane. My Wednesday slot at MDAnderson had been filled. Surgery was scheduled for the following week.
Jason and I did our best to enjoy the time spent waiting. We planned and cooked meals together for our hosts. We saw a bit of Houston. I hauled him to the free day at the Art Museum. We tried a few great restaurants.
Exploring The Shack in Cypress, Texas
My indecision had cost me an extra week away from my babies. More time away from work for Jason.
And worse yet, this:
The weekend before surgery, I found a cluster of lumps on the inside edge of my right breast. They felt like grains of rice under the skin. In the week right before surgery, the medical oncologist at MDAnderson had refused to approve the doses of herceptin and perjeta that were due. As a result, my cancer was growing. Although I responded well to chemo and targeted therapy, my results were not sustainable. All it took was one week off the medication. I had loosened the grip on my life line.