Today is Cycle 3 for Mathew. Being an odd number, his treatment today consists of 3 drugs being infused while he is an outpatient. He is not looking forward to feeling so sick again and was stressed yesterday because of that.
On Sunday we enjoyed our Canadian Thanksgiving with Wendy and Andy at their home (the actual holiday is on Monday however a lot of us Canucks leave that day for rest and travel). Wendy is one of John’s sisters and she cooked a lovely meal that we dined on. Although Mathew didn’t eat anything he enjoyed the outing and we had a great visit. The food was wonderful and I was probably as stuffed as the turkey by the time was done! Wendy also cooked us a lovely meal last Monday that we enjoyed at home. We are continually grateful for the kindness we are being shown.
Speaking of acts of kindness, I now wish to extend our family’s deepest thanks to those people who work at the Pulp Mill with John. Last week someone there spearheaded a fundraiser “boot drive” for our family and yesterday a coworker stopped by our home to present John with the collected amount. We are stunned by the generosity of his hard-working coworkers who opened their pockets to ease our financial burden during this difficult time. It is most humbling to be a recipient instead of a giver. John and I are always the first to donate money when unfortunate circumstances strike someone else. It is our way of trying to help when the chips fall down in someone else’s world. Neither of us ever imagined being where we are today; supporting our mentally disabled 20 year old son as he battles a rare and aggressive cancer in his spine. This money will enable John to take time off from work when Mathew needs him most. We are forever indebted to each and every person who filled those boots with their donations and wishes for a cure. Thank you.
The blog was quiet for a while because I fell ill with some flu/cold going around. This right after I got my flu shot – that sucks! Using a mask to visit Mathew in his room sucked too as the elastics burn the face and grab your hair. To say nothing of having to breathe through them for any length of time! Now I just have that fall-to-spring cough lingering about and am dosing it with cough medicine. It just is NOT a good time to be sick!!
I dread Mathew’s chemo treatment as much as he does. We all do. It only takes a day or so before our chatty son withdraws into nausea, pain and general malaise. The anti-nausea medication does its job and prevents the worst of nausea and has spared Mathew vomiting thus far. He still loses his appetite and desire even for water; he still gets headaches and leg pains and he still gets emotional and exhausted. For part of his recovery period last cycle, Mathew just laid in bed…. In a dark room without even his iPad mini on. No lights or tv. Just dozing in and out for a couple of days, not even talking. I spent that time sitting in his chair, reading quietly… just so he knew I was there is he needed me. I was very happy when his spark started up and his Nintendo DS and iPad mini started up again.
John handled Mathew’s trip to the hospital for chemo today all by himself. It wouldn’t be such a challenge if the parking wasn’t so idiotic. The parking is on a hill overlooking the hospital entrance and to access the building requires negotiating a long and steep flight of stairs. Or else you can walk to the end of the parking lot and take the elevator that brings you down to the ER department and you still have to go to the Admissions at the front entrance. From there it is a long and lonely walk to the far corner of the hospital to the Oncology and Radiation departments. Who managed to design it so some of the sickest patients had to walk the bloody farthest for their treatment? The corridors have no seats for the weary or those who grow faint. It is almost a mandatory requirement for oncology patients to get a wheelchair because if they don’t need it on the way there they will need it to get all the way back to their vehicle!
Mathew did lose his hair this last week. His scalp is now shiny and smooth save for the odd blonde hair that hasn’t dislodged from the skin yet. He wears hats outside our house to both protect his scalp from the elements and because he is embarrassed by the baldness. In our society I know he wouldn’t garner the attention a woman would with no hair on her head. Mathew is not convinced however so he pulls on a funky hat and away we go.
Eating and drinking is a continuing problem for Mathew since his taste buds turned everything to a metallic and “yucky” taste. He needs 2 litres of liquids a day to flush the chemo drugs out otherwise they will concentrate in his blood and organs and make him sicker than he needs to be. Water is great until his taste buds change and then the only drink he’ll take is Dole’s Kiwi & Strawberry juice. A good thing, right? Not necessarily so ~ the sugar content of that drink on top of elevated glucose levels due to chemo causes some patients to require insulin. Great we think, yet another problem we need to worry about. We dilute the drink as much as tolerable and then just let him drink it.
We coax him to eat but his appetite is small and what is appealing is also limited. Mashed potatoes and chicken strips or nuggets. Not even much of those. I explained to him that if he doesn’t eat he will need his nutrition by some means and if it becomes a serious issue then it will mean intravenously. That was enough to get him to drink a meal replacement. We hope with 1 or 2 meal replacement drinks a day and small snacks throughout the day he will keep healthier for longer. He is losing weight as his clothes are fitting loosely on him. Nothing interests him anymore.
Kristen was home for the long weekend. It was so good to see her! We miss her when she is away… *sniff*. She found a Halloween costume when she, Mathew and I went out one afternoon. I’ve included a picture or two of part of her costume. How come there are no black wedding dresses out there for Halloween? The white gown with dripping blood was too much for either of us but she wanted a dress a little spookier than your average wedding dress. Kristen modeled her outfit for us when we got home but the spookiest part? It was hearing the dress and train rustle on the floor as she moved in the lower level of our house! The scariest part for her was trying to negotiate the stairs in that dress and train! I’m showcasing a few pictures of her dazzling in this gown both when she was up and about and later, when she was feeling ill and sank onto the couch to rest. I think her boyfriend may be a ghost groom!
A closer look at the dazzling smile
The smaller animals thought the dress’ train was fun to chase!
Here is what Cinderella looked like after the ball….
Mathew couldn’t find a costume that he could wear while in the hospital receiving chemo and he sank into a depression. His favourite time of year is Halloween and he started having a spookfest party at the end of October where his friends would come over and they would watch scary movies together. Mathew LOVED it and also dressing up. This year however, he will be in the hospital receiving cycle #4 of chemo. I may have persuaded some of his cousins into popping in, dressed in costume, to say hi. There will be candy to hand out to whoever does show up as Mathew also loves that part of Halloween. Who knows? Maybe we will come up with a cool costume to wear in a hospital bed….
This was a picture I took on Thanksgiving Day here in New Brunswick. We’ve had a streak of awesome sun and warm days to enjoy and savour before another winter. The dogs are enjoying our backyard in this photo (I think maybe just Bosco is in this one)