The last two weeks have been BIZZY! As my body recovers, I tend to push it further and further everyday, gently. My strength is pretty much gone, and numerous neuromuscular irregularities keep bubbling up. My balance is terrible and my stamina is toast. Depth perception and my body's "place in space" are unusually "off." I am a complete "do-over" with regards to motor ability. After a lifetime of choosing what I thought were good healthy foods, exercising regularly, and setting goals for my healthy self, it's frustrating to find myself back at square one.
I am no stranger to square one. We are good friends. After 8 knee surgeries, 2 femur surgeries, a hip replacement, 2 mastectomies, 2 pregnancies, and 2 rounds of chemo and radiation, I am starting "comeback number 17" from the bottom of the barrel. The experience is something like this: Try scaling a mountain, getting to the top, and then falling back to the bottom....16 times. A well-trained body bounces back quickly, but the neuromuscular stuff takes time. Orthopedic recovery is a whole different animal than having your brain fried. I'm still a little fuzzy and I often wonder if my reaction time will ever return to its pre-chemo state. I can see how others might trade in their gym memberships for a plate of nachos and a remote. Success seems like a bit of a crapshoot. When you go from a high-level of functioning to a very diminished capacity, it's hard to maintain faith in the process, especially at the age of 50 and after 16 falls from grace. It's easy to give up, and ever so crucial not to.
The struggle, and perhaps my over-developed need to conquer a challenge, is a journey worth taking. This is my Everest. Breast Cancer is my mountain to summit. While friends run marathons on 7 continents, climb 8,000 meter mountains, ski insane places, and kayak close to unrunnable, class V rivers... Breast cancer is my Goliath.
I would rather have Everest. Cancer is not sexy or mainstream. It doesn't require McGuyver-esque ingenuity and does not manifest daily victory. It's the insidious destruction of cells, one by one, until there is nothing left of your former self that you remotely recognize. In fact, it mostly goes unnoticed unless you're a social media hound such as myself. Breast cancer sucks from the warrior's perspective because you win battles, but the war never ends. There's no "been there, done that, got the T-shirt," sort of feeling. I remember after I did the California Death Ride, (9 hours on a bicycle I will NEVER get back), I was so glad it was over, and I never had to do it again. California Death Ride is 130 miles over 5 mountain passes and 15,000 feet of climbing. It was a great training exercise for Breast Cancer, (because it seems endless), and I am glad to put it on a resume and call it done. I wish I could do that with Breast Cancer, but Breast Cancer will keep coming at me. At stage IV, it's a beast and I am at the mercy of research, development and motivated medical people to extend my life and possibly find a "cure."
I am also at the mercy of insurance companies who try to deny me care based on "cost." It costs what it does, thanks to the companies charging exorbitant prices for medicine and care, not because the insured get sick. In fact, I'm pretty sure people pay for insurance in hopes the insurers will do the job of negotiating prices down rather than denying paying clients care when they most need it, and are least able to be their own advocate. My husband struggles to keep his job because he must take on more responsibility at home and some companies don't like employees who are not totally committed to the bottom line over their families. These are just a few of the additional, bonus hurdles that go with a terminal illness, and it goes without reference to the current political climate.
As I look over my life, I realize how easy my generation has had it. No Great Depression, no World War, no great threat to our way of life because good men and women in the military do what they do. My children are healthy, my husband is abnormally awesome, and we live an extraordinary life. I try not to be ungrateful because even with the Cancer part, there are astounding moments that I still get to cherish. Breast Cancer whittles you away slowly. There isn't this sudden, consuming despair that rips out your heart and stomps on your soul. If you are stubborn enough, and a glutton for punishment, such as myself, you can endure, but you do it from a sideline. As your capabilities diminish, you become a spectator of your own life. If I were ten or fifteen years older, maybe that would be easier with respect to a typical human's average rate of decline. Right now, I just want to play with my kids, camp in the wilderness, and travel the world with my family. It's grandiose and perhaps a bit selfish to whine about my disability, or hope that somebody will one day cure cancer so that I may go helicopter skiing in the Chugach range of Alaska or sail around the world. However, it is this driving desire to experience such things that keeps me fighting to reclaim a version of my pre-cancerous self.
I started Physical Therapy this week. It is a painful exercise in humility. My once nimble, athletic self has all kinds of deficiencies. Balance is gone. Strength is toast. Flexibility is not only bad, but worse on the left, (my "good" side). Vision is affected by scar tissue left over from a tumor on my retina, and the lack of mitochondrial recovery means I work hard one day and sleep the next two, but it's getting better. And so is my outlook. I believe I can improve to some level of a functioning human that no longer relies on the kindness of friends to subsist, but rather is the friend that rallies to go for a bike ride. I'm learning how to move again, and how to revise half a century's old training regimen that no longer works for me. The goal is based on finding the minimum dose for maximum results, and I must set new standards for myself based on a new "normal." I am learning and adapting and it's fascinating to witness the subtle changes already occurring, but how does one maximize the steps forward before having to take one back? It's a tricky balance between metabolism and overload.
This week's good news is not only that I have a better than decent PT who is helping me move more efficiently, but my cancer markers are down! Yep, my CA 15-3, which was the indicator that my cancer had returned last summer, is trending down. Prior remission values were in the neighborhood of 15-19. When I got sick, it peaked at 402. It is now 52 which is half of what it was two months ago. This has given me a great boost of optimism toward actively pursuing my recovery, and giving me every reason to make the most of my time.
I am not complacent by any means. There's more of an expediency now to make the most of every good moment and fill my days with being productive toward achieving my goals. It's hard to speculate what life looks like from here, and I have to have faith that treatment will afford me an opportunity to achieve my best self, which is why I'm motivated to achieve a greater level of independence sooner, before my next round. Be that as it may, time is not on my side. While I hope for extended remission, it's not guaranteed, so I am constantly looking over my shoulder for the beast to return. I am training to beat Goliath every day. I still get infusion every three weeks that hopefully keeps Goliath in the shadows all the while living each day as if it were my last. Because it is. Today is the best I will ever be.
