Friday, June 15, 2007

March 2006

March 2006 – When we returned from our trip, we discovered that my dad had taken a turn for the worst. Dad had been diagnosed with esophegeal cancer the previous May. Because of his declining mental faculties, they decided not to operate. His surgeon figured he wouldn’t be able to handle it physically. And there was a very real danger that his memory and personality would not recover from the surgery. So it was decided Dad would undergo aggressive chemotherapy and radiation. He was hooked up with a PICK (sp?) line where he had a constant feed of chemo and went for radiotherapy. He finished his treatment just prior to Christmas and we were all very hopeful that his prognosis was good. Unfortunately, while we were gone to Disney World, Dad either had a stroke or his memory just collapsed entirely. He thought he was in Hawaii – not a bad place to imagine yourself since we were in the middle of winter. After discussing it with my mom and sisters, we decided that Dad needed to be seen by his family doctor. The doctor’s receptionist recommended we get him to the hospital in case he had a stroke.

This started a taxing six week decline in Dad’s condition. He was put in the hospital and they ran an extensive battery of tests. First, they ensured the cancer had not moved to his brain or anywhere else and those scans were clean. Then a friend of mine suggested it might be excess fluid in his brain. Your body normally produces cerebral spinal fluid. In some patients, that fluid builds up and causes symptoms very similar to Alzheimer’s. Some very significant differences, however, is a problem walking and incontinence. Dad had started to shuffle and seemed to lose his balance quite easily. They were working on some physiotherapy to try to keep him from losing his mobility but the treatment was sporadic at best. He lost a great deal of weight because he simply wasn’t hungry and wouldn’t eat. Every meal, one of my sisters, my mom, or myself would fight with him to get him to eat but, stubborn as he was, he wouldn’t eat unless he damn well felt like it! He still knew who we were but he was incredibly mixed up. Finally the hospital decided they had done all they can for him and he was sent to a palliative care centre. When he was moved, we were assured by his discharging physician that he would continue to receive therapy and the hope was that he could regain enough strength to move him to a nursing home. We had pretty much accepted the fact that he wouldn’t return home – Mom simply couldn’t care for him the way he was.

We were in for a very rude awakening a few days after his admittance to the palliative care centre. Apparently the portion of the centre he had been place was not someplace where they put people who were receiving treatment; it was where they put people to wait for them to die. Either the physician at the hospital had absolutely no idea about Dad’s condition, or he was deluding us and himself into believing there was a hope of recovery. A few days after his arrival there, we were told that Dad had 48 to 72 hours left. His organs had began to shut down and he was pretty much non-responsive. We made the necessary arrangements for his funeral and, later that day, Dad passed away peacefully. I’m glad he didn’t linger on in pain and confusion for weeks or months. And I’m grateful for the time we had to spend with him at the hospital – one of us was with him pretty much all day and evening. But he surely was taken from us too soon. He is sorely missed.

Later that month, Amanda went for yet another round of joint injections – this time, her left elbow and right ankle. It seemed like we were engaging in a futile exercise – the medications and injections seemed to make little difference to her condition. She never seemed to get a real extended break from pain or inflammation. As well, Amanda’s body was changing – she was no longer a little girl. She was certainly growing! So who knows what role hormones play in this disease. I don’t know if anyone knows. But it could certainly be a factor. And so we battled on. Amanda went through some periods of what I’m sure was depression – very tired and cranky and just fed up with everything. And I allowed her to feel like that. I figured she’d earned it. But I also made sure she snapped out of it and put things in perspective. Wallowing doesn’t help anyone and it certainly isn’t going to make a positive difference in how you feel. So she’d feel like that for a couple of days – tears very close to the surface, hair trigger temper – and then the switch would flip and she’d be back to herself.

1 comment:

Tammy Z said...

I found it, Michelle!!!! I've read about half of the first page. Many, many kudos to you for taking the time to chronicle this "journey" that we're on. (I "Googled" Juvenile Arthritis Journey, and Amanda's page was the first one on the list. I was elated!).

Hope you're having a great weekend. I look forward to coming back and reading more (and some of the other posts, too, even though I know the basic jist of Amanda's journey for the past 7 or so years!).


Tammy Z