Turning 21 with cancer SUCKS.
The alternative is definitely worse but yesterday was hard for Mathew.
His g-tube is infected again and his derriere is causing a lot of pain. The final straw for him was not being able to enjoy his birthday at all. Getting comfortable is impossible without a lot of pain killers and they have side effects. His temperature is constantly monitored since his immune system is washed out and we are vigilant for that 38 degree Celsius mark that entails a run to the ER for iv treatment & antibiotics.
With the exception of one short temperature climb to the magical & hated number, Mathew’s temperature is going up and down but not to 38. He also stopped eating and then drinking. Hydration is critical to everyone’s health, let alone the cancer patient and yesterday we pushed the fluids on him.
Mathew had two units of blood and one bag of platelets on Friday but so far no sign of neutropenia! The visit to the family doctor is necessary today because that g-tube is bubbling up then oozing green pus from it in addition to causing him a lot of pain right now.
I’m tired and my nerves are frayed. He is desperately unhappy and a depression is lurking there too. We can see the end of treatment in the distance but this last bit feels like an eternity. Even before Mathew’s cancer was diagnosed he first had several months’ of increasing pain which grew excruciating. I cannot tell you how it feels to be screamed at, constantly at the hospital, dragging him out of bed and coaxing him to get ready… always pushing fluids or Ensure or food into him. This last bit, the radiation, wiped me out as well.
I can see the effects of the radiation on Mathew’s back for the first time. There is a large portion of his lower back that is discoloured around the scar from his biopsy last August. That marks the “spot” of the tumour and this skin discolouration is a wide band across that area. I hope this is all we see and it doesn’t progress to anything like a sunburn feeling for Mathew. He can barely handle the everyday stuff right now ~ adding anything else will give him a breakdown.
He knows the next chemo is set for next week and is the inpatient one. I don’t know which of us hates that inpatient treatment the most: Mathew does get first dibs because he is getting those drugs into his system. Right behind him though are John and I, in that endless loop to the bathroom with Mathew’s iv pole. I hate it more each time we are there.
Then comes the wicked outpatient treatment that REALLY makes Mathew sick. It is the reason we haven’t yanked that damned tube out. It is going to do a number on his already tired-out chemical-filled body.
When Mathew is sick he wants attention. He isn’t always pleasant to be around. That is why those marvellous weeks stand out vividly…these other times are so hard on all of us. You hear about people undergoing cancer treatment who are sunny, smiling and gently undergo all the pain and suffering gracefully. That isn’t our story. Mathew is perfectly within his right to respond in any way he sees fit ~ so long as it isn’t physical violence aimed at any of us…but boy, does it wear a person down. I so desperately want spring, where I can sit outside on a beautiful day and soak up a little life and recharge my batteries. My back deck overlooking the lake is the perfect place.
It’ll have to wait. The weatherman is predicting a few more whallops of winter to add to this difficult time.
I hadn’t update for a while because this is one of the hard times. I try to be upbeat and positive but you are wondering what is going on. I took Kristen back to university on Saturday and besides that, overseeing Mathew’s care and vegetating.
This too shall pass.