Thursday, December 6, 2018
I think, at least on an unconscious level, people delight in the stories of someone who lived a healthy life and then was struck down by disease anyway. It fits our rough sense of justice about people who think (we believe) that they making superior decisions. It doesn't even matter if the person is just doing the best they can to take care of themselves - it still irritates people. The long distance runner who drops dead of a heart attack in his 40's, the vegan who finds they have dangerously high cholesterol, the thin person who develops Type II diabetes. See? See??? And, conversely, everyone knows the stories of the centenarian who attributed their longevity to cigarettes and whiskey. And who doesn't want to think the statistics don't really apply to themselves? But even knowing all that about how people operate, there was something about that offhand jab that rankled. Over the next day, I brooded about it.
By that night, I was unable to sleep much. And I woke up sunk in a misery I can't even quite describe. I've worked really hard to stay away from the "why me?" questions and not to indulge in self-pity over my cancer. But I started yesterday morning wondering if living an active life and eating a healthy diet are all in vain and if there was any real point in continuing to try. Any of it - diet, exercise, endocrine therapy, visits with the oncologist, follow-up tests. I spent all of that morning and most of the rest of the day lying in bed, tears flowing like a freaking water faucet had been turned on, and feeling nothing about my life except despair. Not scared, just lacking any motivation to get up and keep moving forward.
I know - it's not what you typically read here, is it? Well, I'm sorry. I'm human and I think I got kind of a raw deal. At every step of the way, since I was diagnosed, things have been worse than anticipated. From the sad-sounding young radiologist who called to say he was very sorry, they weren't expecting it but found invasive cancer, to the breast surgeon and medical oncologist who were both certain I would not need chemotherapy, to waking up from my reconstruction surgery with a foot that no longer worked, to the podiatrist who thought the damn thing welded to my tibia would instead be an easy free-floating lesion to remove. None of this leaves me particularly optimistic about what's ahead for me.
Don't get me wrong - I've spent too much time talking with people in the same boat to think I've been uniquely targeted or that other people haven't gotten an even worse deal than I have. Women who have young children at home or who wonder if chemo will destroy their chances of having children at all. People who were diagnosed with cancers that had already coursed through their bodies, setting up camp in their liver or bones. It could always be worse. I know that. But somehow, that's not where my head is right now.
If you're looking for inspiration here about the upbeat person who kept a great attitude as they beat cancer to the ground, I'm not the one to provide that. At this moment, all I know is that I have painful implants where my breasts used to be, a port that protrudes from under my collarbone and hurts when anything brushes against it, and a throbbing ankle I can't put any weight on. Last year I was active and vital and happy, and now a bald, mutilated, crippled reflection stares back at me from the mirror. I don't know how the fuck I got here. Maybe I'm not far enough out of active treatment to feel remotely healthy. Maybe, when I can walk again it will seem different. Maybe if I'm lucky enough to have a period of time without a recurrence, I might start feeling some hope. I'm working on it. But the next time someone suggests to me, even indirectly or in jest, that their own decadence protected them from cancer while I chose the fool's route, I might not be so gracious in my response.
Saturday, December 1, 2018
So that ridiculously useless walker they sent home with me after my mastectomy is now my best friend. I've already become pretty adept at hopping with it, in spite of the post-chemo leaden thigh that's having to support me. I took the Percocet as prescribed and discovered that I have not magically become able to tolerate narcotics. I woke up Saturday morning with a migraine and broke a walker-assisted land speed record getting to the bathroom before I got sick. It's ibuprofen from here on out, which means I am learning to tolerate the throbbing pain that happens whenever I get up. But it's not often - I was told no pressure on my foot and that I was allowed to be up no more than five minutes out of any hour for a full week!
Sunday, November 25, 2018
Sunday, November 18, 2018
Wednesday, November 14, 2018
The chemo agents themselves should clear themselves from my system in 28 days, but it will take much, much longer for me to return to something approaching normal. In fact, there are side effects that won't even occur for another couple of months or more. So it's hard for me to muster up the celebratory mood everyone seems to expect from me. I'm trying, but I'm just not there yet. Someone asked me if they'd be doing tests to see if the chemo was effective and when I said they wouldn't, he wanted to know how I'd know it worked. Without thinking, I said, "If the cancer doesn't come back, it worked, if it does, then it didn't work." Judging from his expression, that was a little unsettling to hear. But it's my reality and I don't have it in me to sugarcoat it. I think the enormity of the healing ahead of me - body, mind, and spirit - is really just starting to register for me.
Wednesday, November 7, 2018
And then, the drugs and memory loss kick in. What I do recall is that while my husband was off fetching food for us, they brought around lunch and I had a turkey and cheese sandwich and a bag of chips. Things get fuzzy after that. He went to the cafeteria, he told me later, and called several times but I didn't answer. So he came back to the chemo room, said he'd call again from the cafeteria to tell me what my choices were. I have a vague memory of asking for a muffin. He called several times again and when I finally answered, I apparently wouldn't say anything. He chose for us, and came back with a muffin, a grilled cheese sandwich and fries. He tells me I offered him a bite of the muffin and then when he turned back, I'd devoured the remainder of it and was taking huge bites of the sandwich. And I ate most of the fries. Zero memory of any of that. I told him I remembered the first sandwich and chips and he said, "No kidding, I had to brush a bunch of potato chip crumbs off you." Yeah, don't remember that either. Maybe it was my body's way of calorie-loading before my taste buds went to hell.
But before that, I felt okay. The neulasta on-body injector hurt more this time and I'm not sure why. See that little cannula? That is the thing that was sticking into me for 27 hours before it started infusing. I can't tell you what a relief it was to peel it off on Saturday.
"Ring this bell, three times well, and celebrate this day.
This course is run, my treatment done, now I am on my way."
Well, it's not actually done. I have surgeries ahead and years of endocrine therapy, and I know there are no guarantees. But I am very thankful to be done with the chemo part. And that plaque is not the boss of me - I rang it four times, once for each round I completed. And yes, I DID clap for myself.
Sunday, October 28, 2018
I've been taking advantage of the library's willingness to send books I request from any branch in the system to my home library, and have gone off on tangents exploring cults, politics, autobiographies, evolution, and minimalism. I love walking into the library and walking out with the latest stack they are holding for me behind the counter.
But it's not all serious non-fiction, I've also read novel after novel after novel. Some silly, some gripping, all helping me pass the time. Most all, anyway - once in a while I get a chapter in and decide I'm not enjoying the book enough to continue. No matter, there's always another in the queue. So here we are at the end of October, and I just finished my 94th book for the year. I have another week of time off work for my next chemo round and later, ten days off following my scheduled ankle surgery - I think I will easily be able to hit double my original goal by year's end.
Wednesday, October 17, 2018
Saturday, October 13, 2018
My own particular chemotherapy regimen is just two chemo agents once the pre-medications (antiemetics, corticosteroids, anxiolytics) are in. When I first told my younger son I'd be on Cytoxan and Taxotere he said, "Wow. Kind of scary when they include the word 'toxin' in the drug." Cytoxan is a trade name for cyclophosphamide and was named because it's a cytotoxic drug. Cells go through a cycle of growing, dividing (mitosis), resting, and then starting over again. Normally, cells know when to stop that silliness, but not cancerous cells. They are marked by out-of-control growth, rapidly cycling through the phases over and over again. That's where chemotherapy comes in. Cyclophosamides are alkylating agents that alter the cell's DNA and slow cell growth. They act on cancer cells particularly during their resting phase, leaving them unable to replicate. The more rapidly a cell divides, the more useful a chemo agent is. The downside, of course, is that they also go after other rapid-growth cells like those in bone marrow, hair follicles and the mucous membranes of the mouth and gut. Yay.
Anyway, there is an interesting history behind the development of these drugs that goes back to World War I and the use of the first chemical weapon, mustard gas, by the Germans. It was nasty stuff, able to be absorbed through the skin so that gas masks weren't adequate protection. The troops hit by sulfurous clouds of mustard gas liquid would, at high enough doses, become blind and develop ulcerating necrosis of the skin. If inhaled, hemorrhagic pulmonary edema developed. As you can imagine, death from mustard gas was a miserable affair. The soldiers who didn't die went on to experience nausea and vomiting, hair loss and suppressed immune systems. Sound familiar?
So during WWII, Nazis again used mustard gas. Because screw the Geneva Convention prohibiting chemical warfare. A couple of pharmacologists thought, "Hey, if this stuff can kill people, maybe we should use it to fight cancer!" You can't make this shit up. And it did work, to an extent. Unfortunately, it was also near-lethal and only temporarily effective. But chemotherapy was born and nitrogen mustards like the Cytoxan being infused into me every three weeks are still being used.
Saturday, October 6, 2018
Sunday, September 30, 2018
Thursday, September 27, 2018
"Ha ha!" replied the Universe.
But the side effect I like the least is the weird taste in my mouth. And by weird, I mean putrid. It tastes like something died in my mouth and start rotting. No amount of tooth-brushing or saltwater or biotène rinse takes it away. As a consequence, most food tastes really bad. Even plain water tastes fetid and water has no flavor at all. I would think of something I might be able to eat, my husband would make it for me, and I'd take a bite, gag and throw it away. That was fun for both of us.
Sunday, September 23, 2018
The routine is blood work first. I turned my head and held tissues over my eyes until the kind nurse was completely done accessing my port, even though this time only hurt for a second. She told me I did great and I shrugged. She said, "No. Look at me. LOOK at me (pointing to her eyes). You did fantastic. Say it." I was laughing by then and dutifully said, "I did fantastic." I quickly offloaded the bag of blood samples she'd handed me to my husband so I wouldn't have to look at them as we walked them to the lab. Fortunately, my WBC was within range, so I was good to go for that round of chemo.
I know my worst days for this round are still ahead, but I also know I'll get through it. The weirdest part? Seeing my balding head in the mirror and thinking about how much I look like my Dad.
Sunday, September 16, 2018
Saturday, September 8, 2018
"Supplementation with this inexpensive dietary supplement may have an important role in the prevention of gastrointestinal, neurologic and, possibly, cardiac complications of cancer therapy. These complications often negatively affect the quality of life and may also lead to changes in therapy, which potentially alter efficacy. Glutamine may also improve the therapeutic index of both chemotherapy and radiation, increasing cytotoxicity while concurrently protecting against toxicity."
Additionally, women on a chemo support board recommended biotin for nail changes (the hair is going regardless). I went searching again. Another NIH study said antioxidants and vitamins don't decrease the efficacy of chemo. The evidence is unclear about whether biotin can actually help but it does not seem to hurt.
So did I rush out and buy the two supplements? No, I did not. I sent a message to my oncologist about what I read and asked if he was on board with me taking them. When I got an affirmative answer, THEN I bought them. Glutamine was trickier to track down, so I ended up at a health store, with shelves stocked with all manner of pills and mystery potions. When the woman behind the counter found out why I wanted them, she pushed pamphlets on me with information about some supplement combo. She told me that "No matter what they tell you at the chemo center," everything in it was safe. Well, that sounds to me like practicing medicine without a license. I left with just the glutamine, the pamphlet with its crazy ingredients and wild claims, and a vow never to go back.
Cat's claw, sheep sorrel and slippery elm, anyone? Yeah, I'm not taking the word of a shop clerk over an oncologist either.
Fortunately, I turned a corner the next day and I'm learning. I have my own little pharmacy now, both prescription and oncologist-approved OTC meds and next time I'll know what to take in advance. Like doubling up on my usual loratidine and throwing in aleve ahead of the bone pain. But the effects are cumulative and I already feel myself bracing for the next round.
Swallow it down (what a jagged little pill)
It feels so good (swimming in your stomach)
Wait until the dust settles
You live you learn, you love you learn
You cry you learn, you lose you learn
You bleed you learn, you scream you learn
You grieve you learn, you choke you learn
You laugh you learn, you choose you learn
You pray you learn, you ask you learn
You live you learn
- Alanis Morissette