November 22nd, I switched to Taxol. I have infused and mixed (prepared) Taxol for patients as an Oncology nurse, a cruel sort of joke to have this experience and then have to have it infused into my own body. Taxol is derived from the yew tree. It is a thick, viscous, gummy substance that is mixed with saline so they can drive it into your veins. I can't help but wonder why it doesn't gum up the system, but magically, my heart still beats on the days I get it, so go figure. I was worried about the Taxol regimen. I get the Taxol every week. No week off in between to gear up and prepare. It was definitely increasing the difficulty level. However, the Taxol side effect profile is not as toxic as the AC. Tastebuds sort of recover, the headaches and the nausea go away and the brain fog isn't as big of an issue. The big effect of Taxol is fatigue. Fatigue is sobering. It's not like feeling tired where you go take a nap and wake up recharged or a workout that leaves you tired. Fatigue is the debilitating feeling of apathy. The slightest movement seems monumental. It's a lot like being at altitude where every step is an effort. Climbers of Everest will tell you that climbing to the summit is not the challenge. The desire for the summit inspires the brain to overcome the fatigue in exchange for the reward of standing on top of the world. It's getting down from the summit that is the real test because once summited, the tangible rewards are no longer lying in front of you. Every day on Taxol feels like you are trying to get off of the mountain. The fatigue factor is overwhelming and the tangible rewards are absent. You feel like you simply "can't". It's not a feeling I'm very familiar with. Every effort requires a focus of global proportions and inertia is not your friend. There are times when I have literally "hit the wall", where I have absolutely nothing left and my ability to deal with the simplest of tasks becomes greatly impaired. My eyelids start to fall, my body slows to a staggeringly inefficient pace and the need to lay down becomes a vital necessity. It is unrelenting, so much so that I will lie on the kitchen floor. It's just about this time that the kids start bickering over who got more milk in their cup or whose turn it is to empty the dishwasher. Suddenly, I realize that not only is operating heavy machinery a really bad idea, but so is parenting. My ability to be rational with even the simplest family crisis is non-existent. And in this moment I have a choice. I can either start yelling and screaming at my kids for being so inconsiderate of my condition, which they are not remotely perceptive about, or I can simply cry for help. "Can somebody help me up off the kitchen floor?" I tried yelling once (expelling far too much reserve energy). It was extremely ineffective and all of us felt really crappy afterward. Now, I choose to opt out. I say to my kids "okay girls, Mom is done. 3 things have to happen. Homework needs to be done, dishwasher needs to be unloaded and dog and cats need to be fed. Put yourselves to bed and I will see you in the morning." It sounds cruel but it's not. My girls, ages 7 & 9, step up. They get the job done and then either climb into bed with me or go to bed on their own. Give them the responsibility of being their own people and they rise to the occasion. The bickering ends. The teamwork begins and we start to gel as a family. I have to let go of the fact that the dishwasher doesn't always get emptied or the poor dog goes without food one night but that in and of itself is the lesson that cancer tries to teach me every day. Acceptance. It's a beat-down for sure, but how I deal with that beat-down is a choice. How I choose defines me because my outward appearance no longer does that for me. Bald, one-breasted and poisoned, I know longer exhibit my character of an organized, strong, independent woman. I appear weak and frail and incapable. My actions are now more important than they have ever been. I am trying to learn how to be a good person all of the time. It's a daunting task. What I have come to realize is that people genuinely want to be of assistance. If you let them, it empowers them. I used to think that doing everything myself was noble, that not asking others for help and dealing with my own life was a testament to being a good person, a good skier, a good river guide, a good nurse. However, it is exactly the opposite. Give others an opportunity to shine and they do, even when they don't because every little bit helps and as long as I choose to view it that way, both parties win. This is probably elementary for most people but for me, it took cancer to teach me this very important lesson. Fatigue. Who would have thought it would take fatigue to propel me into adulthood.
Last week, I had my third infusion of Taxol. Prior to that infusion, they drew my blood to make sure that I was tolerating the stuff. My blood counts were extremely low, almost low enough to have to cancel the chemo. What this means is I'm not making enough white and red blood cells fast enough. The chemo nukes this process as blood cells are rapidly dividing cells. Generally, you can nuke your blood cells but because they multiply so quickly, the body recovers. Mine did not recover between my 2nd and 3rd week. My white cell count was 2 (4-7 is normal) which predisposes me to infection. My hemoglobin (hgb) was 9 (12 is normal) . Hemoglobin is the oxygen carrying part of a blood cell. If I can't carry oxygen then I can't function. The heart and brain take available oxygen first which leaves the rest of my body nothing. No wonder fatigue has been a factor. The other element of my blood that was low was my platelets which cause clotting. No platelets equals risk for bleeding, making beating my head against the wall another undesirable activity. So, last week, I had to avoid crowds and sick people, prolonged exercise and trauma, 3 of my favorite pastimes. Just to be safe, my Oncologist ordered a life-saving injection called Neupogen. Neupogen stimulates the bone marrow to make more blood cells. This week my counts not only recovered but skyrocketed. White cells jumped up to 13, Hemoglobin is up to 10 and Platelets are up to 300 (from a dangerous low of 100). All good news for the thriving cancer patient, except for the bone pain caused by the neupogen which is basically beating my bones to produce more. Neupogen is the Vince Lombardi of my bone team. My bones are doing up-downs all day. That's just gotta hurt.
In the midst of all of this, I have amazing people inspiring me to be at my best. Last week, two friends flew all the way from Vermont and New Hampshire just to drive me to chemo. We went to San Francisco the night before and hooked up with 3 other friends who drove all the way from Santa Cruz to be there. I can't describe how monumentally important a gesture like this is. I am completely blown away that these amazing girlfriends who are beautiful, brilliant and talented would take the time to make this happen. It inspires me to earn it and my vision of earning it is to live and survive and smile as much as is humanly possible. This gift of presence is huge in a way that it makes me feel worthy of surviving. It makes me want that $9000.00 shot that boosts my blood counts. It makes me get my fatigued, apathetic rear end out of bed to engage with the world outside even though it seems impossible. When I'm feeling a little down, I look to email or facebook where more friends are posting and commenting and encouraging me to not only fight but win. I am surrounded by Vince Lombardis and I will continue to do up-downs and burpees of cancer treatment because it's clear that the world is not done with me yet. More importantly, I am also not done. I got a new bucket list, a few new life lessons and blood counts to spare. Only 8 more Taxol treatments and a little radiation therapy to go. I'll be good as new by April. Until then, I'll be writing, and knitting, and quilting, parenting and budgeting energy with grace and style. Feel free to come by and help me with inertia anytime.
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