Mathew finished his last chemo treatment for this cycle yesterday (Saturday). The fifth treatment fell on New Year’s Day and the Chemo Room isn’t open on weekends or holidays. It was arranged for Mathew to go up to the other chemo room, on the Oncology Ward, and receive the last one there. There were staffing issues on Friday up on the ward so Mathew’s appointment was moved to today when one of the Oncology nurses from the floor could give him his chemo.

The bonus to the second and smaller chemo room, is the beds that are in there. Mathew slept through yesterday’s treatment! Then once he got home he slept for another 9 hours. He woke up shortly before midnight and was up until 20 minutes ago. Of course my body doesn’t respond when I try to order it to sleep, so here I am once again in the wee hours when everyone else is asleep.

On Thursday I briefly spoke with Mathew’s Oncologist when she poked her head into the room where Mathew was getting chemo. Dr. Burnell has Mathew booked for one more treatment and then will do another scan and review his bloodwork. One of his test results shows that his liver isn’t removing the toxins from his body after chemo. This can indicate liver damage and can curtail the use of any chemo drug that is causing this to happen. My guess is the Cyclophosphamide is responsible. Did you know this drug is a derivative of mustard gas? That’s right; the gas used in the first World War to kill our soldiers on the battlefield. Makes one appreciate how nasty these chemo drugs are.

We are staying on top of nausea medication to ensure Mathew doesn’t get queasy through the treatment. It is a dreaded side effect and one he can do without. He gets Zofran during treatment and for the first few days after he is done. It is supplemented with Domperidone before meals and then the nausea medication is reduced to just the Domperidone and gravol if he needs it. Compare that combination to what he needed during the first protocol he had when the cancer was first treated 2 years ago: Emend, Decadron, Zofran, Domperidone and Gravol. Even with all that he still threw up and felt terrible. The fear of that returning is always at the back of Mathew’s mind and we continually reassure him that this treatment is much easier for him to do. He can handle the sleepiness much better.

Mathew now gets Ativan before each treatment. This cycle brought with it many tears and mood swings as the effects of chemo in general are tough on Mathew. He wants his life back; to see his friends, go on outings, hang out ~ all the activities we take for granted. He doesn’t like feeling ill and having to rest or sleep extra because he had enough of changing his lifestyle. On Thursday he acted up enough I gave him a couple of warnings and once he started in on his nurse he earned himself an Ativan. He took the pill angrily. A little while later he reported feeling happier and relaxed.

Lesson learned: from now on he will get a small dose of Ativan to help him cope with chemo.

Being a new year it was time to change the calendar out for a brand new one. I do this by going through the old calendar and writing in the new one, any dates we need reminding of. Usually it is an activity I enjoy, wiping the slate clean and looking forward to a new year. This time it was different. As I flipped through last year’s calendar I saw how we started with hope and slowly realized that Mathew’s relapse wouldn’t be rid of easily. There was the lung surgery in May followed by an immediate growth of new lung tumours bringing us to Mathew’s current chemo treatment. Through the months, via the different and increasing doctor appointments you could see the sorrow and worry creep in. I dread this year. Hope springs eternal but it comes in much smaller quantities as events conspire against a cure. It was a surprise to realize that we are trudging into the new year but this long journey does not ever let up or give Mathew a break yet. We are all tired; the strain of the cancer, its treatment and ongoing issues related to it all continue to pick away at our spirits and energy. Life isn’t normal and hasn’t been for a long time. When cancer recurs – and in Mathew’s case it started up after 3 months – it smacks you hard in the gut. You know things you didn’t before it started. The road already travelled took its toll and it doesn’t take much too knock you down again.

It is my hope that in a couple of months there will be great news and our return to a somewhat more normal “life”. Mathew thinks often about his present and future. He broke down about a month ago and discussed dying, death and his funeral with me. He beat the social worker by 8 hours. I’d arranged an appointment with one to teach me how to talk about those difficult subjects BEFORE it ever arose. Ha! Once again life beat me to the punch! It was a terrible night and one I hope is never repeated ~ that it never HAS to be repeated. Once Mathew got it all off his chest his cranky behaviour eased right up; I can’t imagine the stress he had worrying about everything by himself. Dying and Death are such HUGE subjects for anyone to grasp and struggle with, let alone someone with intellectual disabilities.

My word for 2016 is hope. Hope for a cure for Mathew’s cancer, hope for a good quality of life. Hope that Kristen is happy in Ottawa and likes her work.

I hope always.

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