..to quote Roy Sheider… like the boat in Jaws, I think the medication box is getting too small for the job at hand. The number of meds that Rich takes between chemo cycles is growing. But there are no complaints, each one of those bottles represents another side effect reduced or removed. Coming into this journey for the second time, we know not only that you do need to address each side effect but you also need to forestall them before they even start. Once they begin, then it takes longer and more meds to get it all under control… timing is everything. As Mad Eye Moody admonishes “Constant Vigilance!”
Which bring up the point that every single side effect and every single bit of discomfort needs to be documented and brought up to the doctors and nurses. Nothing is inconsequential. We never know what is important and what is not, so a diary of all these details needs to be kept and brought with us to each doctor’s appointment. A list of questions and concerns drawn up beforehand and the answers all jotted down at the office. Nothing can be left to chance. And always always always, we go together. When all that information is being thrown at you in the maximum number of syllables possible, no one person can process it all. This is most definitely a team effort.
While alternative medicine has its place and we certainly look into all our options, there is nothing natural about chemotherapy… we fight chemicals with chemicals with no qualms at all.
Today we had our follow-up meeting with the doctor’s office. Bloods were drawn, vitals checked. The week’s meds, including the infusions, were reviewed. Rich numbers are good… they’re either improved or holding steady. More meds are added onto our growing list. The chart of what/when is getting more complex. But there are no complaints… unlike ten years ago, Rich has been able to continue to go to work. He spoke at an Eagle Court of Honor on Saturday. Granted he slept most of Sunday but he woke up this morning full of energy for the work day ahead. We pray that energy and vitality continues!
But sometimes this gives us a false sense of security. Out of nowhere, bone pain from the Neulasta hits a nine out of ten on the pain scale. Foods that have a hidden acidic or spicy note hit the ulcerated parts of his stomach and another favorite food is put on the hold list. We research triggers, warning signs, what can set these episodes into motion. But some, like that bone pain, just come out of nowhere with no warning and no trigger. It just is. It just is. You play with the meds looking for combinations that will resolve issues when they pop up. And sometimes, you just have to giggle.
Years ago, if you went into a no-tell motel room, you’d find a box attached to the bed where you put a quarter in and it would make the bed shake… an ersatz massage for the weary traveler. .. the Magic Fingers Bed. In 2004, we had our own version of the Magic Fingers… one of those odd combinations of side effects that popped up without warning. In the middle of the night, Rich would suddenly start shaking and our entire bed would jiggle like someone just popped a quarter into an attached box.
While it initially made us laugh out loud, it did then become painful as his muscles would all cramp and nausea would begin. This would continue night after night. Through trial and error, we found the exact mix of meds that would alleviate the symptoms. Xanax would stop the shaking, Vicodin with additional Advil would relieve the pain, Reglan would settle his cramping stomach. It would take twenty minutes for the meds to kick in. So we’d need a distraction as well in the form of a movie on TV. Each night before we went to bed, we would fill a shot glass with the quantity of pills that he needed and a DVD set up ready to go. At the first shake of the bed, We’d yell “Magic Fingers!” Rich would down the meds while I’d hit play on the DVD and then we’d sit back, relax and enjoy the ride as we waited for the meds to kick in. What could have been a frightening and disconcerting set of symptoms, instead became a time for us to laugh at the absurdity of this disease.
A bigger boat
As Rich would say, sometimes you just gotta laugh.