Mathew had bloodwork done yesterday at St. Joe’s. I called the chemo room a while ago and his platelets were at 120 yesterday so it is a go for chemo today.
I already gave Mathew an Ativan. The anticipation and worry of how it might affect him bothers him more with each day of each cycle. On the one hand he does want this cycle out of the way because a long-awaited movie, “Deadpool” is premiering soon and he wanted to be fully recovered to go see it on its opening weekend. We looked at the calendar and he should be fully recovered with a platelet transfusion or two under his belt by opening night.
I might miss that movie. Deadpool is a hero…but more of an anti-vulgar-offensive-hero who swears a blue streak among his other less than attractive personality traits. It is funny but I’d rather see it at home. I hope John wants to take Mathew!! Mathew has been a Deadpool fan forever and he has all the collectibles to prove it.
So that is the positive spin I’m putting on this week’s chemo. Every day this week, waking Mathew up and trying to get him dressed and ready on time is as fun as pulling out my fingernails one by one. Getting a shower in is an extra-huge deal because he needs so much help. Usually by the time we both get home from the hospital…we’re both pooped and ready to chill out! Mathew forgets he doesn’t get very tired until later in the week. I know he worries about the cumulative effect of each successive treatment but it is a gradual process I’m seeing, not a sudden drop in health and recovery.
The major effect of this treatment right now is fatigue. Mathew gets frustrated that he ends up nodding off and needing frequent naps. Explaining that it is his body recovering from these toxic drugs doesn’t help much; he is just angry and underneath it all, very worried about treatment. He is angry that more of his life is sacrificed to treatment and that the cancer just won’t go away. He hates the treatment but is afraid of stopping treatment because it means he will die in a matter of months.
Over the last week, since Jasmine was euthanized, I’ve been reflecting on our animals and how we ended up where we just can’t handle any new ones. I realized that with the diagnosis and treatment of Mathew’s cancer that he needs more help as time goes on. In a way his ability to take care of himself has regressed…and as it consumes more of our time and energy, there is less left over for anything else. Only after Jasmine was gone did I realize that the stress of worrying about elderly dogs; getting them out for bathroom breaks, feeding, grooming, walking, etc was just getting too much. I remember all the wonderful years the dogs and I took long, luxurious walks in different places and the fun we had when they were young. The increasing dependency of their needs as they aged crept up as did Mathew’s. During that initial treatment protocol when Mathew had inpatient hospital stays was difficult. John going to work then racing to the hospital to see us, me then racing home to let the dogs out and feed them…rushing to eat, take a shower then walking the dogs or resting before heading back to the hospital so John could come home and get to bed. We had many offers from friends and family to take care of the dogs but the responsibility of them weighed us down with time. There were frequent messes in the house as their age diminished their capability to hold in their bowels. If we lived in a warm climate and had a year-round doggie door tot he outside…well, it still wouldn’t have worked. Bosco went a bit senile that last year and thought it was much better to find objects in the house to do his business on.
I miss the dogs. Their time had come after a long and rewarding life. I enjoyed their company and the fun we had. I am relieved that responsibility is done with for now and yes, I feel a lot of guilt about it. It will be a long time yet before I stop jumping up to take the dogs out or look for them in the wee hours to take them for a midnight pee break. Or worry about how long they’ve been alone. Or if they are hungry. Or lonely.
It made me realize that as Mathew’s treatment continues everything else has to be set aside as much as possible. It has been a marathon and while the current treatment doesn’t make him so very, very ill like the initial protocol the time and energy needed to help him is all that we can handle right now.
It was three years ago Mathew’s first symptoms appeared; the leg pain I associated with his special needs’ bowling. It is 2-1/2 years since that fateful CT scan that showed everyone his pain wasn’t imagined and that an 8 cm tumour in his spine was the source of his crippling pain. That is a long time for him to be fighting this and for us to be with him. He tells me often I don’t really know what it is like having the cancer and chemo or radiation. He’s right. I don’t.
He doesn’t see our side of it. The preparation for everything, changing his sheets and clothing constantly because of the profuse sweating; clean up of him and his room when he is sick from treatment. Helping him into the shower and washing him down as his mobility and self-care skills are poor. Running for his prescriptions, keeping track of all his medications around the clock. Sitting with him for hours on end through the day and evening so he isn’t lonely. Sitting watch over him when he is ill. The list goes on and on. It isn’t done grudgingly ~ we do it out of love for our child. There isn’t any place I’d rather be…except if I could trade places with him. I’d gladly take this beast on and let him have the life he deserves.
Life is cruel and I can’t barter with the devil or change places with Mathew. I am in a position to care for him however and I don’t want to waste a moment of our time together. It doesn’t mean it is easy. It wears you down over time. It wears on your very soul to see someone in such pain. It tears your heart as a parent to watch your child suffer and to see that nothing has made this evil go away.
It ages you wondering what is going to happen. In 2-1/2 years nothing has effectively stopped the progression of this Ewing’s Sarcoma. So far this treatment has stopped its growth… but the nodules (little tumours) haven’t decreased in size or disappeared. This treatment cannot be given for an indeterminate time period ~ the maximum cycles Mathew can have is 6. Today starts number 4. If these nodules don’t change size, well what is going to happen once this treatment stops?
We fear we know. That is a soul crusher.
So Mathew, I don’t know what it is like to receive chemo and endure all the nasty after effects. Or what is was like having that awful G-tube and other invasive procedures done to your body. You, dear son, cannot even come close to imagining the suffering we go through each and every day…keenly aware of how fragile life is and despising your suffering. We put on a good, happy face for you because that is what you want and we don’t want you to worry. Dad and I know you are very worried underneath it all but I’m not sure you really understand just how much we worry and fear these next months. Oh, people reassure us and tell us everything will be ok. They mean well but it is like being slapped in the face really. Nothing has worked out so far and it’s been 2-1/2 years…and the best and most aggressive treatment didn’t work. Not even for 3 months. Seriously, how the fuck should I feel it is going to be ok and just “look on the bright side”? I am with you almost 24 hours a day and I see the toll this is taking on you and all of us who love you. Inch by miserable inch that wretched cancer is trying to claw every living cell of your body to claim for its own. Minute by minute you are fighting back by doing all that is asked of you from your cancer specialists. You are being subjected to drugs that many people die from. Your youth is in your favour but your bone marrow is taking a beating from the duration and combination of the drugs.
So I get it Mathew. Much more than you think I do. The meaning behind the final straw that broke the camel’s back is all too clear and relatable now. The back bends and feels like it is breaking.
I can do it honey. I can do everything that is asked of me, your mother. Unless you lose your battle.
That is the straw that will break my back.