My double mastectomy at MDAnderson was scheduled to be six hours long. It took eight and a half. After I said goodbye to Jason and was rolled into the operating room, it got terribly real. Through the haze of medication I was aware that the room was cold. Bright. Very large. And very busy. All of these people here for me?
I hear words of comfort. The sound of the voice mattered more than the words. I couldn't stop crying. I very much wanted this to be someone else's story. I wanted to fly away from that room. The closest thing I got to an escape was the anesthesia.
That would do.
For eight straight hours, thoughts of cancer would be quieted in my mind and my heart. I am confident Jason would not say the same for himself.
I had a team of two surgical oncologists that specialized in breasts, and dealt predominantly with IBC. The previous week, the breast surgeon had felt, and biopsied, the new lumps on my breast. No surprise, they were cancerous. She made the decision to take a very aggressive approach during the operation...cutting around these new lumps, as well as areas above and below my breast where I had hardness and lumps at the time of diagnosis. I felt confident, this is what my oncologist at home had wanted all along.
It was decided a plastic surgeon would stand by. When I met with him, he walked me through all the possible ways he might close my right incision. The first option involved moving up tissue and skin from my abdomen (called a diep flap procedure). If there was enough extra abdominal fat and skin to work with, this was the most preferred. If? Seriously, Doc...you're being too kind. Next favorable was cutting a muscle from my back and flipping it forward. Ew. Last resort would be a skin graft from my thigh.
Although it is still hard to wrap my mind around ever wanting reconstruction, the plastic surgeon was emphatic about leaving the most possible "bridges" open for it in the future. He was also very concerned about minimizing scarring. He assured me, someday I would care. It's hard to imagine the day when just living isn't exciting enough, and I start to have energy for vanity again.
I'm convinced recovery is never pretty, although I read testimonies of women walking about their room, sipping a Coke, asking to be sent home just hours after their mastectomy.
I'm not one of those women.
The plastic surgeon closed my right chest wall with the diep flap procedure. The pain on my right ribs and abdomen was excruciating. When I first left surgery, I had trouble breathing. I would doze off and just stop trying. The post-op nurse wasn't impressed. I was anxious to move on to recovery and get some rest.
At this point I didn't have the strength to move, and it hurt too bad to even consider it. After the nurses got me on the first bed in recovery, they realized it was broken. Getting settled into the replacement bed, my catheter was pulled and leaked all over.
Just hop up and we'll change those sheets for you.
After being tossed around a bit...and my drains being yanked on...OUCH thank you very much!!...we were left in the relative silence of institutional lighting, IV drips, and the monitors.
Looking back, I really wish I had put more effort into preparing my body for this operation. Emotionally, I felt better than I expected. Relieved, even. But my muscles were weak from months of inactivity. My legs were easily fatigued. My abdominal muscles honestly had yet to recover from back to back pregnancies...twins followed by a 9.5 pound baby. They were worthless. And now, my arms were off limits. As little movement as possible. No weight bearing loads. No pushing myself upright in bed.
I should've spent the summer in yoga classes.
Jason was a rock. The first time he saw my scars, I cried with embarrassment. I kept thinking, he is thirty years old. This isn't what he bargained for. It wasn't what either of us had bargained for. He told me I was beautiful. Strong. A Survivor. I thought childbirth had made me vulnerable. There is a whole new level of intimacy achieved by having your husband put on your sweat pants, your compression bra, the dressings on your drains.
Oh, the drains.... I had five. Five tubes leaving small holes in my sides. Five clear plastic bulbs, the size of canteens. Fluid, leftover from surgery or generated during healing, would drain out of my body into these. Twice a day they were emptied, including any clots being squeezed, or "stripped," from the tubes. Jason did this, and then later my dad. The quantities of each drain were recorded, with the ultimate goal to get negligible discharge and have the drain "pulled" (removed). I thought I was prepared, buying a cami with pockets to hold the drains. What I didn't know is there would be so many drains. And they would be so big. So big they didn't fit in my cami. Or most of my shirts. Thankfully, I was able to swap to smaller drains (hand grenade sized) at an early post-op visit. Now, all zipped into my cami, I resembled a suicide bomber in pajamas.
Surgery was Monday. Tuesday evening I was discharged. My Aunt Karen came and helped us haul everything to valet, and we drove the few miles to hers and Uncle Dick's house in the West University neighborhood of Houston. Was this short drive always so bumpy?
Wednesday Jason flew home, needing to return to work. My dad arrived the same day. I slept, read, he cleaned my drains and cooked for me. Aunt Karen changed my dressings. It was not the recovery I imagined...Disney Junior and PB&J kisses. But with devoted care and no responsibilities, I thrived.
Firm in the resolve that I would return home for radiation, I scheduled a consult with the radiation oncologist at MDAnderson. I wanted to pick her brain. What questions should I ask when I was selecting a radiation oncologist in Spokane?
The night before my appointment, I read a chapter of the textbook this same radiation oncologist wrote about treating Inflammatory Breast Cancer.
My resolve was lessening.
It was humbling to read about the pioneers, the IBC sisters before me, who died because the doctors didn't know how to treat this aggressive disease. All of the experimentation .... Surgery first? To radiate or no? How often? When to give chemotherapy and which ones.... This was the 1980's and 90's. I am fortunate enough to live in a time where they have at least that much figured out. There is now a trimodal standard of care for IBC: Chemo. Modified Radical Mastectomy. Radiation. Every time.
The radiation oncologist was brilliant, down to earth, and mother to a daughter the same age as London and Quinn. She acknowledged the personal sacrifice I would be making if I were treated in Houston. She also spoke of the science behind the twice daily radiation for high risk IBC patients. 200 layers of treatment fields. Stuff I didn't fully understand. But I understood this: no matter where I was treated, the radiation exposure I would receive to my chest would reach my lifetime maximum. No second chance to get this right.
So much for resolve. Leaving that appointment, Dad and I both knew I would schedule my radiation at MDAnderson. I had come this far. I would see it through to the end.
I had planned to recover in Houston until all my drains were removed. Now, committed to another 5 weeks away, Dad and I booked a visit home. By the day of travel, I had one drain left. Not too bad. A small price for a week's worth of snuggling my three favorite people.
I had been away for three weeks.
It felt like an eternity.
How would I ever survive five?