With nearly every post on this blog I've put forward the positive side of the story, heads up if you will. Every coin toss won, though, still has the other side of the coin and it occurred to me a week or so ago that I should share some of the tails. I've been hearing from many people that this blog has helped shine some light on how to cope with cancer so I feel obligated to mention some of the less-than-awesome stuff here today.
Deep into chemotherapy now, our lives have stabilized and the shock of the diagnosis has worn off. Further, the 100% kick-ass resolve has diminished a touch. We are back to our regular lives because regular life goes on. There are jobs to perform, household chores to do, school is back in session, and somehow it feels like it's always time to make dinner. And what to make tonight? Fuck, I feel like I just finished washing dishes from last night's dinner. Andrew, to his credit, has been good about cooking but he's still a high school teenager and not always quick to pitch in. The house is tired because Kim and I are tired. This new life isn't all that great.
I'm angry tonight. I've been angry for a few days now. Kim and I were really into good things this summer and I was looking forward to things continuing. Namely, our physical relationship. We're just months away from our 20th anniversary and anyone paired up that long knows there are peaks and valleys to all things in a marriage. This summer seemed like the highest peak we'd ever had. And, yes, by "physical relationship" you know what I mean. But we were also riding together more and hiking more and just being active more. Kim was in great shape and routinely would drag me around on the bike. Cancer and cancer treatment has taken that away. I know it will return but right now, here in the moment, I feel like something's been taken from us.
She had a really great streak of riding to and from work by bike this summer and the positive effects were evident. Stuck in a car again because of fatigue and other physical issues has her really down. Plus, there's seemingly always a doctor's appointment to go to. She hasn't ridden to work in a long time. Still, she hasn't missed a day of work other than her chemotherapy days and on the days it's in the afternoon she goes in for the morning. She misses the daily routine and escape of her bike commute and I understand. Rush hour car commuting is likely one of the worst outcomes of human "development".
(edit - She rode to work last Friday. She felt terrible but she wanted to be out. Back at home she mentioned how nice it was just to smell the air while riding.)
I went for a doctor's visit and discovered that I am Vitamin D deficient, anemic, and my hematocrit is 37. The low range for a healthy male is 40. For our friends who follow pro cycling you know that 50 is the ideal number, the max value allowed under the sports anti-doping rules. Riding my bike is even harder now because I don't have enough red blood cells to carry oxygen. I can take supplements and get out of this much more quickly than Kim. I am not lamenting my issue, just pointing out the impact that an illness such as cancer can have on caregivers.
For many, many years I have been far too critical of Kim's absentmindedness. It's something that just gets to me. Chemotherapy is known to cause "
chemo brain", a condition of even greater cognitive impairment or cognitive dysfunction. I know it's not something she can't control but it aggravates me to no end. I cracked last Friday night
(edit - two weeks ago) and we had a quick yet intense argument. I promised I would not introduce any negative stress into her life and yet I fought like hell over something stupid just to prove my point. It's hard to adjust to this rapid change.
We still have yet to recover from that fight. (edit- By the time this post publishes we have resolved this)
Since her hair loss I've had a number of people ask me when I'm going to shave my head or when the boys will, too. Kim and I talked about this long before her hair came out and I talked about it with Andrew and Jason even before that. Kim doesn't want us, too. From the beginning, Kim has not wanted to live the breast cancer brand lifestyle. No ribbons, no t-shirts, no slogans, no kicking cancer's ass, and no fuck cancer bumper stickers. When we're out she doesn't want the world to see her as only as a person with breast cancer or as a family with a breast cancer parent. So she denied my attempt to join her with a shaved head two weekends ago. She's the one who has to look at us and this is how she wants to see us. Making Kim feel good is what makes her feel better and we'll do whatever she asks of us.
Kim shaved her head following chemotherapy #2 and in the week since #3 the final follicle hold outs are beginning to drop away. Her scalp is pretty smooth right now. Interestingly, her armpit hair is also gone. And, yes folks, it's mostly gone from somewhere else, too. Arm and leg hair, eyebrows and eyelashes, still there.
Kim's tastebuds are dulled and food isn't really that enjoyable for her. Strangely, even water has lost its appeal. Eating and drinking are now conscious choices during the day akin to having to take medicine. And its more than just the loss of taste. Her appetite is diminished, too. I am concerned by this as she needs her strength to recover. I've received a number of message from people suggesting medical marijuana to combat these symptoms and the nausea. It's as good a time as ever to have that consideration given that the option is now legal in so many states including Oregon. I have zero experience and Kim has just as little so we're both trying to get up to speed on things while also dealing with the bullshit of the Reagan-era stigma that still has a tiny little hold in our psyches. No matter the remedy, I'm sad for Kim that food brings such little joy. Even coffee has lost its appeal for her.
I get asked every day how I'm doing and I reply, "I'm good, we're good, thanks." And a few folks will look me straight in the eyes and say, "No you're not" and I know what they mean. They want me to give in a bit and let some of the stress go. I don't fault those people for saying that and I am impressed at their willingness to say something so difficult to me. That takes guts and I am actually bolstered it. But I am good and we are good. It's all we've got. This isn't optional and, in a strange way, that makes it easier to deal with. This isn't a tough life choice like quitting a good job as an adult and going back to school. If things get difficult you just go back to work. Or should you? There's always doubt. But there's no doubt with Kim's cancer. It's there and we know what to do about it. No doubt at all. Sure, sometimes I wonder if it'll be OK for Kim to sneak in a piece of pizza or have a beer but that's mild doubt. I'm good with that bit of doubt.
Since July 19th Kim has had zero pieces of pizza and zero beers. I've had four and one. (edit- we went out for pizza tonight and found a pretty decent gluten-free pizza for Kim. I snuck two pieces of regular cheese pizza.)
But! And this is a big, big but, we finally found a great gluten-free pasta. After many attempts with gummy, gross substitutes, this Ancient harvest stuff is a wondrous discovery. Andrew made the most incredible pesto sauce last night and it was so good on this pasta. Though we did have to wait to eat because Kim only boiled one-and-a-half 8 ounce boxes because she only wanted to make a pound. Hmmm, a twelve-ounce pound? See, that chemo brain is the real deal. We cooked up the rest and had a great meal.
It's possible to
always win a coin toss and I will keep gaming the system to get as many heads-up tosses as we can. But the tail is always there so be advised that some of these posts may not always be sunshine and unicorns. Thanks for making it this far. Hey, who's hungry?
