Okay, so here’s how it went down. (If you missed the lead in, go to my latest blog posts and read ‘Life Is Never About Just One Thing’. Then come back, okay? Go.)
In the week or two before we finally parted from the neurotic lunatics who’d land-Lorded (yes, I capped that L…get it?) over us in their newly purchased home that had been our meticulously maintained home for sixteen years, I’d awakened early one morning to the sensation of tenderness deep within my armpit. In a sleepy fog, I instinctually felt around to see what it was. I sat up in alarm when I realized there was a slight thickening there, deep within, and it seemed to be against what I assumed was muscle. I quietly slipped out of bed, making sure I didn’t wake up hubby, and tiptoed over to the bathroom. I turned on the shower and stepped in. I soaped up and then I checked again, thinking the warmth of the water might make it magically disappear, or wake me up from some kind of odd dream I could be having. But, no…it was still there. What the hell is that? I wondered. I checked under the other arm…nothing.
I must have stood in that shower for thirty minutes, hoping ‘it’ would simply dissolve, go away, or at least get smaller. Any change at all would have been a welcome relief. And when none came, my gut fluttered with deja vu.
This is how it had started ten and a half years ago. I discovered it the same way…and back then when my doctor told me my mammogram from one month earlier had been clear, I persisted. “Well, Ann, so you can sleep at night, I’ll send you on for an ultrasound.” I haven’t seen THAT doctor for, well, for ten and a half years now.
After emerging from the shower into a steam filled bathroom, I texted my surgeon. ‘I need to come and see you,’ I typed.
She did an ultrasound right on the spot. We could see swelling of what appeared to be a node, but not ominous swelling. Apparently when nodes have cancer, they change shape in herky jerky ways. This node just looked like a normally swollen node. Likely due to the stress and lingering cold I’d had, she thought, even scar tissue. From ten years ago? I didn’t express that thought out loud. Her advice was that we wait six weeks and see if it changes any, because, as she explained, it would be highly unusual for my particular cancer to resurface now, after so many years. I left her office reassured, but a little uncertain about waiting six weeks.
Four days later, she emailed me. I was thinking about your situation. I am not worried about that node but know you like a clear answer. If you prefer I can do a needle biopsy or take it out.
Surgery was scheduled for August 1, immediately after she returned from a two week vacation. I could have found another surgeon who was available sooner, but she’s the best. Not just MY opinion…really, she IS the BEST. So, nope…I was willing to wait for her. It was a quick surgery, and for a change I woke up without nausea from the anesthesia. I took that as a favorable sign.
My post op visit was scheduled for two weeks later, exactly the time my hubby and I were planning to leave on a two week road trip. “Don’t cancel that, there’s no need,” my surgeon said.
YAY…I was so looking forward to some vacation at long last! Both my husband and I needed some down time…family time. The plan was to drive from San Francisco out to Wyoming to visit our daughter in Jackson Hole, then on to Denver to visit our son and daughter-in-law, and then on to Santa Fe, New Mexico to visit our past. After returning back home, the plan was to hop a plane four days later for another two week trip…this time to see our moms; mine in Chicago, hubby’s in Florida.
Five days after surgery I got a call at home. The pathologist had contacted my surgeon directly and emailed her a ‘draft copy’ of the pathology report which showed cancer…NOT in the node, but in the axillary tissue adjacent to the node, pressed up against my muscle. The pathologist wanted to run another test given the oddity of the find and the diagnosis from ten years earlier. “You’ll probably need local radiation, maybe five years of Tamoxifen too. Possibly chemo, but I doubt it. It’s likely a rogue cell that just took all this time to make itself known. What you had ten years ago was a very slow mover.” I asked if this was still within breast tissue. No, it was in axillary node tissue. Different from breast tissue. Science is confusing to me sometimes.
We began our road trip directly from the surgeons office after the post op appointment. Final pathology results STILL hadn’t yet come in…very unusual given that it was fourteen days past surgery. So, what’s taking so long to get the final report? I’d asked. Two weeks is an excruciatingly long time to wait when it comes to cancer.
Well, turns out the pathologist sent my tissue on to another lab, one equipped to hone in on a more specific gene cell. Was I tested for this gene ten years ago? Yes, I was. “It was negative ten years ago, and it’s likely be negative now. Only 15% of breast cancer patients have this, so it would be unlikely to have anything to worry about there.” Her voice was reassuring, and I felt a sense of calmness when I left her office.
From downtown San Francisco, we headed east, out to Sacramento and into the Sierras, through Tahoe, Reno and on to the rest of Nevada, about as desolate as it gets. Hours later, somewhere near Battle Mountain, my iPhone indicated a new email. It was from my surgeon. Well, you seem to like to buck the odds. It’s gene positive.
The remainder of the drive was one of reflection. We spotted the most amazing double rainbow within moments of getting the news. The skies opened up, thunder and lightening rolled in. We pulled off the road at a truck stop to replace a windshield wiper that was disintegrating against the glass as it furiously tried to clear the torrents of rain that came fast and angry. We stayed at that truck stop for an hour, losing precious time. Finally, in the dark of night we motored on. The cutoff from Highway 80 was a lonely and narrow road, a hundred miles with no gas stations, no homes, no sign of any civilization aside from the occasional trucks that blew by us from the opposite direction, spraying water across our Chevy Tahoe like an afterthought. We pulled into a hotel in Twin Falls, Idaho for the night. It was a relief to be off the wet road, to be within civilization again. To put my head down on a strange pillow and simply go to sleep.
Three days after arriving in Jackson Hole, we reluctantly turned the car around, said a tearful goodbye to our beautiful daughter and drove straight through, fifteen hours, directly home. Hubby and I sat in front of my oncologist the very next afternoon. “I never expected to see you again for this,” she told me. Ten years ago when she treated me she was head of Hematology and Oncology for the medical center, and she still holds that role today. We’d thought we’d completely kicked cancer’s butt a decade ago.
But, as we all know to be true, cancer can lurk dormant and then rear its ugly head in the most unexpected ways. That’s where the sting is. My cancer has morphed into something a bit more complicated.
When I asked my oncologist how long the treatment plan would be, her reply was “Indefinitely.” My eyes widened, and I could feel the rush of emotion threatening to spill. After a stunned and skipped heartbeat, I said “…indefinitely?” just to be sure I heard her correctly. I glanced at hubby. He was holding it together, so damn it, I could too.
So, here I am, just a matter of six weeks later, adjusting to my ‘new normal’. I’ve already had chemo round #1; two chemo drugs along with two additional targeted therapy drugs that will hone in on that very specific gene cell in an effort to eradicate it from my body. I spent six hours in the infusion suite, with drugs dripping into my arm vein. I passed the time reading, writing in my cancer journal, and visiting with another patient in the infusion room. Diagnosed 18 months ago with stage 4 colon cancer, he couldn’t have been more than 35 years old. Married to a cancer gene researcher, of all things. He seemed to have the need to speak with another kindred spirit, because once we began to chat, he got on a roll and told me he spent the first year after diagnosis preparing to die. Then he hit rock bottom as each chemo drug was no longer effective for him and now he’s on a clinical trial drug. A few months ago he decided to reach out to counsel others who’d been newly diagnosed with the same kind of cancer he has, and in doing so, he’s realized that he was talking the talk, but not walking the walk himself. He went on to speak of his initial shock eighteen months ago, and told me how surreal it felt to receive that diagnosis. He told me how sorry he’s been to have wasted twelve solid months preparing to die, rather than living each of those days in appreciation of every single moment. We spoke for close to forty five minutes, with his wife listening quietly by his side, and my hubby listening quietly by my side. Surreal. THAT is the exact same word I have said over and over. This is absolutely surreal. I feel just fine. Really? Is this really happening?
And, it’s not been at all bad. I think I’ve lucked out, at least for this first chemo rodeo. Side effects have been very tolerable in the grand scheme of things. I’ve been out and about every day, and although the first 10 days I didn’t feel truly spunky, I also didn’t feel truly awful either. It’s really very doable. And three weeks from round 1, I go for round 2. Every 3 weeks like clockwork…barring anything unforseen (like white blood cell counts that don’t rebound quickly enough).
There is a blessing in every turn of fate, and the blessing for me is that I am getting these new drugs that have already provided outstanding clinical study results to combat this effectively and with tremendous promise. I know now to stay off the internet. Because the more knowledge I have, the more daunting the journey. I’m not worried about statistics. I never have been. But, too much information can put even the dumbest dog into a complete funk. As my brother so aptly said “Hey, have you read the back of an aspirin bottle lately?” He’s extremely wise.
My last chemo will be December 23rd, but those two targeted gene therapy drugs will continue on to keep kicking cancer’s butt on my behalf for, well, indefinitely. Every three weeks like clockwork. Radiation will follow chemo, but I’ve yet to ask the details on that. I mean, really, does it matter? Whatever it takes…SIGN ME UP.
My new best friend is coming in a matter of days. Portia. That’s the name I’ve decided to use in reference to the chest port that will be surgically placed inside my chest next week, just in time for chemo round #2. First my white blood cell count needs to come back up, because all these drugs cause it to drop significantly, leaving me at high risk for infection. So, tomorrow I will get an injection that will help my white blood cells climb up a bit faster… a requirement before surgery to install Portia. Assuming all stays on track, we’ll be prepared for round #2 just 48 hours later. Portia and I will arrive strong, mentally prepared, just as I did for round #1.
Portia and I will endure for years to come, kicking cancer’s butt every single step of the way.
BRING IT ON.
I’ve had a few folks ask if I’m angry. Angry? No, that thought has never once crossed my mind. Who can get angry at life? Life has so much turbulence that really, the only thing we CAN all count on is the blessings that touch our lives every single day. Blessings in the form of cherished loved ones, both family and friends. For me, blessings in the joys of uninhibited laughter with all my special peeps and those real moments in time that are what compose my unique memories, the ones that will sustain me as I journey the uncharted waters that churn as far as the eye can see.
Cancer will never define me. It might dictate an infusion schedule, but that’s a schedule I’ll gladly adhere to because those specialty drugs will be my silver lining to ensure I take this journey according to my own timeline. One day at a time, balanced and eyes focused on the horizon. I won’t look down and I won’t look back. I GOT THIS. I SO GOT THIS.
Blessings to you all for taking an active interest in my well being. I am forever grateful for your love, friendship and prayers. I will update again as my journey progresses.