When we started on this journey to restore Kevin’s health, we thought we were prepared for the road that was before us. We now know that no amount of cancer treatment-readiness would have adequately prepared us for this journey. In a nutshell, we voyaged out to sea during a hurricane in a jon-boat, with one paddle and an umbrella. It is one thing to hear about the waves and rough sea or to see the video news footage from the eye of the storm, but it is a completely different thing altogether when your tiny boat is being beaten by the wind and water, every wave threatens a capsize, and you are no longer sure in what direction the shore lies. Cancer is like childbirth-every experience is different. But the TREATMENT for cancer is like natural childbirth. No matter what you have heard, read, or believe to be true, the actual experience is far more brutal.
You know what really burns my biscuit? When I read the inserts for medication of all the potential side-effects and they seem so very unlikely. If you read the potential side effects for over-the-counter vitamin C, you find that it may cause:
- Abdominal bloating and cramps.
- Kidney stones.
As a kid, I would never just take ONE FLINTSTONE Vitamin. I munched down 3, 4, maybe up to 6 if Mom wasn’t paying attention, ingesting up to 600% of the recommended daily allowance of Vitamin C. I never suffered any Vitamin C related side-effects. So, when researching the possible side-effects of skull-base radiation, we hung our hats solidly on the word ‘possible’ (we are such optimist). We were wrong.
The first ten times they shot poisonous radiation beams into Kevin’s head, neck and sinuses, it didn’t seem too bad. He was a little more tired than usual and he had some increased congestion and he coughed up some stuff that was three kinds of scary, but it wasn’t a hurricane. It was more like a constant irritating drizzle. Little did we know that the storm was brewing and when it hit, I was scrambling to batten down the hatches. Then I suddenly remembered I was in a jon-boat and I really have no flippin’ idea what hatches are and I sure as shit don’t know how to batten them down.
It was expected that the radiation would irritate the back of his throat and roof of his mouth and make it difficult for him to eat and swallow. In my mind I am thinking okay: broth, soup, pudding, Jell-O, ice cream, milk shakes, protein shakes and he will be good. I will feed him full of things that slide easily down the gullet. What wasn’t expected is the severe nausea and violent vomiting in reaction to the radiation. Not only is his gag reflex reacting like it is on crack, but he has had severe nausea and vomiting. He hasn’t been able to eat anything solid for the last couple weeks, tolerating only water and Boost Plus (high calorie) nutritional drinks. Because he happens to be a big guy, he is supposed to slam 8 of these a day to maintain his weight, but he is so damn sick that is a very lofty goal. He sometimes wakes out of a dead sleep dry heaving. The meds they have given help some, but nothing so far has been able to squelch the beast.
His weekly appointment with the Radiology Oncologist was today and he is doing everything in his power to get this under control and avoid putting in a feeding tube. He prescribed two more medications and scheduled another mandatory weigh-in for Friday. We headed to the pharmacy to pick up the new meds and the man at the counter and I had an enlightening conversation that went something like this:
Counter Man: We have the one medication, but the other the insurance kicked back. It is pretty pricey.
Me: Okay, how much is pretty pricey (What the pharmacy counter man doesn’t know is that I have the insurance flex spending card and I am ready to lay down the entire year’s allowance for whatever is going to make Kevin stop power puking.
Counter Man: They come in packs of 2 pills and we usually only dispense two, due to the cost and his doctor ordered 30 pills.
Me: Okay, just tell me how much it is going to cost to get it filled. I want to just pay for it.
Counter Man: Twenty Thousand.
Me: TWENTY THOUSAND U.S. DOLLARS?!! (just to be certain, because there was that off chance he was talking about pesos or even better, Ugandan Shillings (approx. $5.34).
Counter Man: Yes ma’am. I have sent a message to the doctor.
Me (in my head): I hope you included in your message that the nice lady with the puking husband wants to personally thank him for prescribing a ‘great drug that has been very successful in situation like these’ that costs more than three times what the car she currently drives is worth; one thousand dollars less than she earned the entire year right after college; nearly 1/3 of what they paid for their first house.
Me (out loud): We will just be getting the one medication today.
Counter Man: That will be $19.00
Me: Perfect. I was shown the Maserati and I am leaving with a 1986 YUGO.
I haven’t fully recovered from sticker shock and Kevin has spent the majority of the evening getting Boost Plus down and trying even harder to keep it down. There is nothing quite like being the Captain of this boat and standing by completely helpless while the storm continues to take its toll on my normally hearty first-mate. I keep telling myself to stay the course, the treatment sometimes seems worse than the disease. This is something he has to get through. He can’t opt out. I have to be brave, and positive, and strong and most of the time that is exactly what I am being. But there are times, when he is sleeping, I sit in the closet in the dark and drink chocolate milk and maybe I cry a little. Sometimes I drink it right out of the carton (sorry roommates, if you are reading this, there might be a little bit of backwash in the chocolate milk).
Enough about this stupid Kryptonite radiation crap. Here are some other fun facts:
- Spending 90% of the time in an apartment 800 miles away from home is a perfect way to discover just how comforting chocolate milk can be when consumed in the dark straight from the carton.
- Everyone is Houston has a dog, except me.
- The dogs in Houston are overwhelmingly more friendly than the human beings.
- I can now independently navigate to Target and Kroger without the use of Siri.
- The maximum number of times I have circled the block to avoid parallel parking Kevin’s truck in downtown Houston—Eight. Twice I gave up and parked in the parking garage.
- The top two things I eagerly look forward to each day: 1. Taking the trash to the trash chute 2. Walking to the mailbox.
- Expecting the Rocky Theme to spontaneously play when carrying a case of water up a four flights is setting one’s self up for disappointment.
- There are not words big enough to express our gratitude for the gifts, cards, messages, emails, care packages and prayers we have received. We are going to make it through this because of all of you. Special thanks to the special people who have donated airline miles to fly our kids to visit us and a big
shout out to the special guy who flew one kid down in his private plane! There is no doubt that we are staying afloat because of the lifeline our amazing family, friends and community have extended us. God is good. Y’all (that is what they say here in Texas) are awesome. We will outlast the storm.