Eleven down and only 2 more to go!
Unfortunately Mathew does have one more inpatient cycle to do ~ his very last one. The next chemo will be the outpatient CAV treatment and with that, the very last time he will ever receive the Doxorubicin (aka the Red Devil). He will reach his lifetime toxicity of the drug and can never take it again.
This cycle was a tough one for some reason. Mathew needed Lasex each afternoon to rid his body of accumulated fluids. That is the drug that makes you urinate excess water out. This happens over a short period of time and by yesterday I was suggesting Mathew just take a pillow and nap in the bathroom. The trips were so frequent there was not much rest between bathroom runs. This week the drug was administered mid-afternoon thereby assuring a better night’s sleep. Considering the already frequent runs to the bathroom 24 hours a day…well, it sure wears you down after a day or so to say nothing of 5 straight days of it.
This cycle Mathew’s moods swung wildly up and down. By the second day he was affected enough that his sister was advised not to visit. Later in the week one of these episodes got so loud and emotional that the nursing staff was turning its collective attention to Mathew’s room. When I realized this I asked for, and received, an Ativan to help him calm down. Not only does the steroid, Decadron, cause mood swings but so does one of the chemo drugs Ifosphomide. What joy to hear that!
Kristen helped us immeasurably by taking care of the animals so we didn’t have to rush back and forth. Let me tell you that was such a nice break!
This hospital stay we didn’t order the tv service. The last visit it was so seldom used that we passed on it completely this time and didn’t miss it at all. Now that we have Netflix Mathew enjoyed selecting from its extensive menu as well as bringing some movies and games from home for his Playstation 3. His Dad sets him up like a king in his bed and Mathew spends many happier hours entertaining himself in his usual fashion. Bringing a tv and a gaming system then hooking it all up is too much for me and I’m so grateful John is willing to go the extra mile. John and I have network capabilities if we want to go on the internet otherwise we read. When Mathew is up and at it we are usually ardent spectators of whatever he is doing and when he is sleeping we are either napping or reading.
All of Mathew’s special medications ran out so the health benefits coordinator and the Oncology ward physician spent time filling in paperwork to send to the Province for special permission for these drugs. Now that Mathew is 21 he is no longer covered under our healthcare plan, which is a very bitter pill to swallow. I will enquire this coming week if there are exceptions for mentally-handicapped adults who live with their parents but as Mathew has cancer that requires expensive drugs my feeling isn’t good about it. So, Mathew is on social assistance and the provincial government pays for his drugs if they approve the special authorization of course. Which requires lots of paperwork. Mildred, the health benefits coordinator at the hospital, is a gem who shines brightly for lost souls travelling the treacherous healthcare path. The stress of handling all the paperwork to receive necessary medications while your loved one is gravely ill is enough to send me over the edge. New Brunswick does not have a catastrophic drug plan in place; one of the few provinces in Canada that does not. I’m sure the government is loath to implement one but they are bowing to increasing public pressure as more and more horror stories come to light of the high cost of drugs needed for some health situations. The general public is not aware of this hidden cost of getting sick until one finds oneself suddenly dropped into hell only to discover what isn’t covered by health care and health plans. It is scary.
I’m tired, can you tell? Mathew got home just over an hour ago and the week exhausts all of us. I wanted to let you know we are all home and are on our way for some decent rest in our own beds.
Home sweet home.