One of the great things we humans are good at is adaptation. We adapt to different environments, to stressful situations, to life-changing circumstances. How we adapt contributes to our survival. I am a firm believer that two important things contribute to the success of adaptation, the power of positive thinking, and active problem-solving.
Everyday, is a new experience. The side effects of treatment are numerous and come and go with great irregularity. From daily bloody noses to joint pain to peripheral neuropathy, you never know how your day is going to go. The fatigue factor is debilitating and I can count on that one just about every day. I have about two hours of battery-life each day, which when I try to push to three makes my family rebel with impunity. My kids are no exception.
"Mom, you're reaching your two-hour window. Maybe you should get some rest."
This is great advice but when your 12-year old is saying it, the credibility is circumspect given that she has a 48-hour battery life with auxiliary power, and I think she's just tired of listening to me tell her to clean her room. I like to follow the "use-it-or-lose-it" principle, meaning I like to push that energy limit so two hours doesn't go to 1 hour. I can "rest" with the best of them but every day, confined to quarters, gets a bit old. As I get closer to the end of my treatment (only six more!), the recover time is longer. For example, Thursdays and Fridays were my down days, but now, I'm down through Monday, just in time to go to treatment on Tuesday. Let me just say that the psychological effect of this is a bit brutal. Each week, my body deteriorates a little more and that weakness makes it tough to psychologically pick yourself out of bed at 7am to go to re-poison yourself.
This is where the power of positive thinking plays a role. It's not forever (yet) and there's an end date coming up. There will be celebrating and revelry (but probably for only 2 hours) and my energy will return to some level that remains a mystery given the slaughtering of my mitochondrial fortitude. They come back with time, but time is the key factor. You don't just stop chemo and turn back into your 40-something self. Most of you know me not to be a patient person. so problem-solving will gear towards recovery nutrition, exercise and dogged determination alongside frustration over slow progress. Generally, it takes a year to get immunity back to working order and 2 years to see marked improvement in strength and agility. Not to be a doomsday girl, but I know my days are a little numbered so I worry about the level of recovery with respect I have time left on this Earth. I'd like those remaining years to be somewhat pleasant.
For now, problem-solving is in full swing in trying to keep my mind busy with things that I enjoy. I'm not much of a reader which is ironic for a blog writer. I like to make video presentations so I work on those with all the soccer photos that I've taken for the last 8 years and the fun pictures being sent to me in #liveliketori T-shirts. By the way, I love these pics. You people are nutty and I just love that. From mountains to archeological sites in faraway places to groups of friends at parties, I can't tell you what a boost that is. I have also organized chemo days to include lunch at my favorite Vietnamese restaurant. Across from the hospital is this great little place called "My Father's Kitchen", super small, super friendly and amazingly good. The pho (pronounced FUH) is the best chicken noodle soup ever. It's a staple at this point and keeps me eating protein and getting enough liquid to keep my nose hairs from sticking together. They also have green papaya salad I take home for dinner and the whole plan and experience of this gives me something to look forward to on Tuesdays other than getting poisoned with red bull and vodka and cytotoxic chemicals that induce the side-effect-of-the-week.
I've advanced to "GI issues" as well, meaning it's tough to eat at all with taste buds that are all jacked up and a gut that rejects anything I put into it. Don't worry, I'm still not throwing up and the nausea seems to have diminished (woo hoo!). I'm pretty sure my body has given up on ejecting my stomach contents via the top end, so now, it's trying for the back end. Running right through me is an understatement and I haven't experience this level of expulsion since my first trip to Mexico. Montezuma would be well satisfied in his revenge. If I had to choose between the two, I'd say that I'd rather go with this. Backing up is far worse and causes problems that require hospital intervention. My goals are to avoid hospitals. Bad things happen to people with no immunity in hospitals and I prefer not to entertain that possibility.
Doctors have an answer for everything, recommending a number of pharmaceuticals that certainly work and I will take them when things get a little dicier, but my theory is that body adapts to everything you put it through. My concern is that it will depend on some of these pharmaceuticals that I will be stuck with for "life" (whatever that means) and reduce my chances to getting back to my 40-something self (despite now being 50). Not willing to do that. So I adapt to the current situation. More fluids. More soup. More small meals to try and keep nutrition needs met and stable. It's kind of a full-time job.
I imagine this is a lot what the 70's an 80's look like in the human lifespan. Basic bodily needs become the daily goal and there's less time and energy for stand-up paddle-boarding, kayaking or skiing. If any of those things are on your list, don't wait to enjoy them. At some point, they may go away.
I am doing well all things considered. I'm maintaining and the end of chemo is now on the horizon. We are making plans for spring and summer and I am hugely optimistic that my deficits will be few and far between. Scans to come sometime in March or April, just in time for soccer. Until then, we are getting pounded with rain and river levels are at flood stage. Fortunately, nobody is losing their homes and everyone appears to be safe so it makes the enjoyment of watching flood stage rivers exciting and fun. For boaters and river people, watching water and the power of nature is a cool thing and beats the hell out of the non-stop flow of Netflix we've been experiencing lately. Driving around seeing bridges about to be swallowed up by river flows is pretty fun and I try not to lament the lack of energy that keeps me from jumping in my kayak. It all speaks to that problem-solving thing since the river is about 45 degrees and after jumping in my pool on New Year's Day, I can honestly say that being upside-down in freezing, fast-moving water is a level I am not trained up for.
I am excited for spring. I am excited to get to see some of my Park City friends. I am excited to get back in a kayak even if it's a class II drift to a peaceful river spot. And I can say that these thoughts and plans and anticipations are what drive me through some of the uniquely interesting days of chemo side effects. Problem-solving, positive thinking, adaptation, or I think the marines say, "Adapt, Improvise, Overcome." Hoorah and Semper-fi.
