Dear Readers,
Welcome back to my adventures as caregiver to my wife, Carol, a cancer patient with Stage IV SCLC (small-cell lung cancer). It has recently become my mission to provide insights into the job to anyone else who finds himself or herself suddenly in my shoes!
I see myself as a UN (an unregistered nurse), because I've become a blend of Florence Nightingale, a Merry Maid, a chauffeur, and a food shopper. It's time-consuming, but not overwhelming, because I've always helped with food preparation and housekeeping. Now I just get more than my share of all that.
But I must confess to having shown impatience with Carol's fogginess after several months of chemotherapy. I'm glad to say that I have examined my frustration and pretty much neutralized it, but it's taking a while! Carol has always been sharp as a tack (and obviously smarter than I am). So, it was very disconcerting for me the first hundred times following chemo that I would say something to her and realize she wasn't quite “there.”
I've finally gotten it through my thick skull that the malady that the nurses in the infusion room at St. Joe's call “chemo brain” is not something Carol can overcome through an effort of sheer will. The toxicity she's experiencing would render me every bit as rummy.
So, now we joke about it, and we look forward to the post-chemo moment when she will miraculously have her mental acuity (and the hair now missing from her head) restored.
I realize now that I should always take care not to show anger when she takes forever to process a simple question, such as, “Do you want anything from the kitchen?” I should patiently repeat the question and give her the extra time needed to answer it! I should also tell myself that I would be a real idiot to get short with her when she is trying mightily to deal with her chemically induced abstraction — while also feeling terribly vulnerable.
The rules of the game haven't changed. It's not enough to tell a woman you love her. You have to show her. Day in, day out, actions will always speak louder than words!
Another thing. You may not be the world's oldest caregiver, but take it from a man who thinks he is: aging can make you quite grouchy, even without provocation. I was starting to address my cantankerousness before Carol was afflicted. Now it's incumbent on me to work through my crabby moments before I speak. I'm not saying I'll be a saint by the time she goes into remission, but I sure won't be the nasty old bugger I was turning into!
This gets us to where I may really be going with all this. It is quite possible that caregiving is an opportunity for me to rewrite my life and get appreciably better at living it!
Hey, this is spooky, downright metaphysical stuff, because, to my mind, anyway, it strongly authenticates the old saying, “Man proposes, and God disposes.”
Wait a minute. It gets more spiritual than that. Lately, whenever Carol sends me upstairs (or downstairs) to fetch something she just about can't retrieve on her own, I hear a strident inner voice asking me: Mike, before you get all crotchety and bent out of shape about all the running around, is there honestly anything more important that you should be doing right now? This always proves embarrassing, because I instantly know that the answer is a resounding no, and I know in my heart that there is absolutely nothing more important than helping my bride (of 50 years, come Dec. 19, 2015). She has defined me and completed me, and I am realizing my debt to her a bit more with each passing day.
So — if there is such a thing — the up side of Carol's cancer is this: it awakens me to what a prize she is and how much she deserves to be waited on (even “hand and foot”).
The moral to this story? Being a caregiver may be your finest moment. It is mine!
I said just a few paragraphs ago that Carol and I can joke about her “chemo brain.” That underscores the importance of humor as a tool for coping with the stress of her struggle.
It is far better to share a good laugh about something than to just let it get you down!
Case in point. One day about a month ago, we were in the middle of the Hollywood Market near St. Joe's, picking up a few things, right after her afternoon chemotherapy. Carol was suddenly hit by a strong flash of nausea. I grabbed a plastic bag from a nearby produce table, and Carol neatly vomited into it, with my arm around her. Wiping her chin, she perkily observed, “Gee, I never threw up in a grocery store before!” The idea that she could chalk it up as a personal first of some kind really tickled me, and we were still chuckling as we checked out at the cashier's stand.
Here's another sample of the therapeutic value of mirth. Carol has to climb stairs to get from our living room (where the TV is) to the second floor (where the bathroom is). Once she jumped up from the couch with an urgent “GOTTA GO!” and navigated the stairs with all the speed she could muster (not much). A moment later, still sitting on the couch, I called up to her, “Did you make it?” Her punch line — “Almost!” — cracked me up, and she spent an extra moment upstairs, giggling about the misadventure, herself.
Every day there are things to laugh about if you're quick to recognize them, and we are getting good at that. Once I had the bright idea of dumping white meat from a $4.99 Costco chicken into a can of cream of tomato soup, microwaving the mess, and proudly serving it to her. She shook her head slowly, as if to say, “This guy will never be a chef!” — and then she started guffawing. I didn't even have to be told to take the dish back to the kitchen and make her a PB&J. I later ate the bizarre soup concoction. Nothing heroic. I haven't tasted or smelled much since 1976 … an interesting story I may save for later.
You get the idea. Funny things happen in the middle of a life crisis, and you owe it to yourself as a caregiver to jump on every opportunity to smile, chuckle, laugh — or cackle. It sure loosens things up!
It also helps to have a vision of great things to come. Carol and I see ourselves on an ocean cruise about five years from now. Marcia K. Horn gave us that vision, which we now cling to fanatically. We've since embellished it a bit. We can now see ourselves sitting out on the main deck of some huge ocean liner, writing postcards of forgiveness to every medico who ever even faintly suggested that Carol might not catch a boat to Tahiti.
Carol is resplendent in her Polynesian gown, and is surrounded by other guests who crowd around her to hear her story. I have, of course, slipped away to the shuffleboard court, also on the main deck, where Carol can watch me astound lesser mortals with my skill at the game. Life is good. No, life is great. Hang onto an idea like that one, think outrageously positive, and you clearly will have a clean shot at your own, private miracle.
I know. It's pie in the sky, by and by. But it sure keeps us going. (I'm already looking for my shuffleboard stick!) Remember, you will only rise as high as your personal vision about your future will let you. So, make it a fabulous one.
I'll soon prevail upon Marcia to provide a cogent piece of literature (possibly titled Cancer for Dummies) that will give you and me a quick overview of the progress the medical community is making in its worldwide efforts to wipe out cancer. She can boil technical terms down to simple English, and reading her précis (or one she recommends) will make us all more knowledgeable about the disease and how ferociously it is being attacked by researchers, physicians, clinicians, and major pharmaceutical companies.
Some of the light that will be shed on modern-day oncological terminology can give us a basic understanding of such technical matters as biosimilars, chemotherapies, clinical trials, immunoconjugates and immunotherapies, molecular profiling, radiosurgery and radiotherapy, redirection of “brake cells” to make cancer killers of “T cells,” and tumor and whole-genome sequencing. We civilians will not be elevated to oncologist status overnight, but through quick study we will definitely know more than we know now. At cocktail parties where such topics come up, we may even sound like we have a clue!
If you're game, so am I.
In future chapters of “Carol and Mike's Place,” I will also wax repetitive on things important to Carol and every other Stage IV cancer patient — to include hydration, nutrition, pain and nausea management, and bowel regularity. Attention to them all is critical to our success. Every patient who can keep drinking liquids, eating food, medicating properly to defeat pain and nausea — and managing to have frequent BMs (in spite of the constipating effects of many cancer medications) will be in a prime position to beat “the Big C.” I wish every patient and every caregiver (including Carol and me) a laser-like focus on the task, extraordinary luck, and a perfectly wonderful outcome. Onward and ever upward!
—Michael E. Hearons
