Dear Readers,
The theme for today is: “Be Ready For Anything!” As many of you know from personal experience, having cancer or caring for someone with this disease is not a walk in the park. So, it behooves us all to stay flexible!
For instance, Carol recently got up in the wee hours of the morning to make a bathroom run, and she decided not to turn on any bedroom lights, but just get there in the dark. Unfortunately, she got disoriented and fell backwards on her tailbone. This resulted in a run to the ER at St. Joe's for x-rays and CTs to determine the extent of her injuries.
We got lucky. The x-rays showed no breaks or fractures to her tailbone, and a CT of her head showed no signs of TBI (Traumatic Brain Injury), which can happen to anyone on a blood thinner (such as warfarin) who takes a potentially head-banging fall. Carol's same-day ER discharge papers did not detail the test findings. She just got a final shot of morphine, and we were told that she was free to go home and nurse her very sore hind end. You can bet that I'll prevail upon Carol's primary care physician and oncologist, both of whom will get full reports, to give me copies of same for my very own file.
I am especially interested in the particulars of the CT of her brain. She got it a month earlier than scheduled, due to her fall, and not after her sixth round of chemotherapy. So, the unscheduled CT of her noggin gives us an early peek inside it. We know there was no cancer up there when her brain was first scanned, and it would be nice to know that such is still the case!
Allow me to reemphasize: to be a good patient or caregiver, you need to know as much about what's going on as possible! This knowledge allows you both to make cogent statements in interfaces with the medical community that you would otherwise not be qualified to make. This involvement, in turn, makes the family advocacy team (in this case, Carol and Mike!) a very real part of the larger team working to keep a Stage IV cancer from becoming a terminal illness. Staying up on things is serious business, folks.
I'm reminded of the title of cancer patient Gilda Radner's book, It's Always Something! There's a constant need to adjust the plan, or go off in a new direction, as events dictate. Carol and I are now looking at a possible increase in her principal pain med, Oxycodone, after many months on a specific schedule with 6-hr. intervals. We figured we'd eventually have to up the dose as her body built up a tolerance for the med, and that time may be at hand. (But I may be able to sell Carol on a 3-day pain patch instead.) We will take the matter up with our oncologist's nurse practitioner next Monday. While there, we will also tell Suzanne about the big improvement in Carol's nausea management since we went from 12-hr. to 8-hour intervals in her doses of Compazine.
We seem to have also found the magic formula for bowel regularity: 2 daily over-the-counter senna pills with stool softener from our friendly Rite-Aid drugstore (and a supply of Miralax-equivalent powdered laxative for “balky days” that is now seldom required).
Constant fine-tuning is the name of the game when dealing with cancer — or with life, in general. Fortunately, there's “chemo brain” to relieve the tension and give us something every day to laugh about. Carol, whose body is, of necessity, toxified by chemotherapy, will say something out of the blue that I cannot, for the life of me, understand. She may suddenly blurt, “I really don't want to do that for them anymore.” I will respond, “What is it you don't want to do anymore, and for whom, and how long has this been going on?” She will look at me like I'm being a troublemaker, and I will try to rephrase my question. We soon realize how ridiculous we both sound, and we start giggling like mad.
What amazes me is that, on her foggiest days, Carol can meet me at the dining-room table for a card game or a board game (e.g., Rummi-Kub) and beat the stuffing out of me. This, to my analytical mind, means one of two things: women are smarter than men, or Carol is an idiot savant. (I am leaning toward the former [and away from the latter] hypothesis.)
I also recall that, on April 3, 2014, at age 74, while she was getting her first-ever blood transfusion [for anemia] at St. Joe's [and coping with the dry heaves], she was beating me handily at a game of Scrabble, while also worrying about beating cancer. What a girl. I'd give my eye teeth to be that brave. I tend, in contrast, to be afraid of my own shadow.
Oh, I do manage to make myself useful. I track Carol's nutrition, for one thing. Suzanne is always stressing the importance of eating to keep one's strength up. But Suzanne makes it easy by proclaiming at every appointment we have with her that “there are no forbidden foods” for Stage IV cancer patients. She always adds, “We have bigger fish to fry!”
Yesterday Carol had an afternoon snack of cheese, crackers, potato salad and apple sauce. Around midnight, she found her appetite and scarfed two liverwurst sandwiches with mayo and butter, a pile of potato chips, and some milk. We then had our highly informal “medical meeting” on the couch and agreed she should shoot her full 50 units of insulin to help process all of the day's groceries. Rule of thumb: “Eat less, shoot less.” When we take her fasting blood sugar today, we will know how well we did.
Carol does a fine job of hydrating, without my hounding her. She has always drunk a lot of water, and continues to do so. My only contribution to that practice is to always have a Dixie cup with ice water in it within her grasp. Water is so important in so many ways, ranging from its roll in flushing toxic chemotherapy materials from the body to lubricating the colon and facilitating BMs.
Next Monday I will call the Binson's Home Health Care Center near us to discuss a lot of loose ends. For one thing, we have a doctor's prescription for a commode (i.e., a “potty chair”), which would save Carol a whole lot of stair-climbing. Having small-cell lung cancer, she huffs and puffs from the effort, and our only bathroom is on the second floor, a long trek from the downstairs living room. I'm thinking perhaps we should also get Binson's 3.5-inch raised toilet seat while we're at it. Costing just a few bucks, it would quickly convert our toilet into a “high boy” that's appreciably easier for users — including me — to dismount from. Who knows? I may end up using the potty chair more than Carol will. And if neither of us ends up needing it for long, we can store it in the basement with a ton of other stuff.
Beyond products, I will want to talk with one of Binson's administrators about Medicare's (recent?) requirement for an annual physical to qualify customers for maximal Medicare benefits. That whole Medicare thing is a sticky wicket I always appreciate help with.
Well, you are getting the idea. The detail of this caregiver lifestyle is unbelievable.
It helps to look beyond the present moment to a much happier day when cancer has been vanquished and cancer patients and their caregivers have been given a new lease on life. If you haven't done so already, give yourselves the gift of a vision of some wonderful outcome. There is no logic to having only modest expectations, good people! For our part, Carol and I will continue to see ourselves on that ocean cruise to Tahiti a few years from now. But, by all means, tailor your own vision to your wildest dreams.
Maybe you will just want to stay at home for a solid month and gather everyone in your inner circle around you and bask in their love.
Maybe you will go shopping. Maybe you will scurry to the nearest church, temple, or synagogue and give profound thanks to the Almighty. Maybe all three, in no particular order.
But do plan ahead, think positive and assume the best. This plan of action is sure helping Carol and me!
—Michael E. Hearons
