Joel and I came back to Vancouver yesterday. We stopped in Abbotsford at Wendy and Ray's house for tea. Nathan and Ellie were home and then Rachel and Kaitlyn stopped by. Ellie and Kaitlyn were both fighting over Joel's attention and he commented that it would be nice if girls his own age would act that way. I am sure he will kill me for writing this.
I didn't bring the camera with me today so there won't be any pictures. Yesterday Joel and I stopped at Whole Foods to pick up meals for the next few days. He was shocked that I didn't buy any chocolate as I am trying to cut down my daily chocolate habit to just a few days a week. My theory was that if I did not have any chocolate on me, then it would be much easier not to eat any. He told me that I have an obligation to some of you... so, later on in the week I will go on a chocolate hunt. I promise.
10:30 a.m. - Joel is presently sleeping. He just had an LP done. When he wakes up I will go make his appointments for Fridays chemo and go pick up all his new prescriptions.
Okay, so Dr. D just came in and interrupted my typing. We had a good chat..... everything is going very well. We are six months into treatment and we have about six more months of intensive treatment to go. After that will be 3 years of maintenance where life should get close to normal again. We had a good chat about radiation. That is probably the part of all this that scares me the most. I read an amazing book "The Emperor of All Maladies, A Biography of Cancer" and it really made me understand the importance of Joel having the cranial radiation. But Dr. D said that he would set up a meeting with the specialist in September or October so we could talk more about it before Joel has to have that done.
When Joel was first diagnosed I started looking for blogs about kids will A.L.L. so that I would know what to expect, what questions to ask and an idea of what daily life would look like. It was very hard to find anything. That is one reason I wanted to do this blog but those are the very things I find it hard to write about. It is very hard to write about the side effects of chemo and how it is affecting Joel's body because it is very personal and also it is really not the things I want to acknowledge. I am somewhat in denial and I plan on staying there for a while. Joel had an amazing weekend at family camp and that is the kind of thing I would rather focus on. Not the fact that two weeks before he couldn't stay sitting up when he had visitors, or that after chemo he just curled up on the bed and lay there for the rest of the day. Now his appetite is back and he can eat half a rhubarb crisp topped with ice cream in one sitting and I forget about the days where I feel lucky if I can talk him into eating two perogies. I know he is physically feeling really bad when he is given two Canucks playoff tickets which are really close to the ice and he tells the nurse to find another kid to give them to.
So it is now 11:10 am and Joel is just waking up. Time for more chemo. He had intrathecal methotrexate - chemo in the spinal fluid which is supposed to keep the leukemia from hiding out in the brain. It can cause nausea, low blood counts, sensitivity to the sun, mouth sores, organ damage and headaches. Those are just a few of the side effects.
Now he is getting vincristine (which is derived from the periwinkle plant) and some of the side effects are pain, numbness and tingling in the fingers and toes, weakness, hair loss.... and the list goes on.
And he is getting doxorubicin (which is red and turns the urine bright red for the next few days). Some side effects can be low blood counts, nausea, hair loss, mouth sores, heart damage.... and the list goes on.
Twice a day now he also gets dexamethasone. Side effects can be mood changes (extreme irritability to rage), increased appetite and food obsessions, indigestion, sleeplessness, nightmares, loss of bone mass which can cause extreme pain... and the list goes on.
He also gets ranididine to counteract the indigestion caused by the dexamethasone.
I go over all the side effects so that I know what to watch for. I am currently rereading the books "Childhood Leukemia" and "Childhood Cancer". They make much more sense to me now after reading "The Emperor of All Maladies, A Biography of Cancer".
4:00 p.m. Chemo is finished for the day and now I will head back to my happy place of denial and give you some stories that you can really laugh about. They might horrify my mother, mother in law and gramma but they will make my sisters laugh till they pee their pants.
The day we leave for Vancouver it is always very busy and rushed. Treatment is always count dependant so I take Joel for blood work first thing in the morning and then we wait for the results. Yesterday I made blueberry muffins and started baking bread so that Grant and the kids would have a few things to eat while Joel and I are gone. Adam wanted me to make another rhubarb crisp since Joel and finished up the last one. I had just gotten the crisp into the oven and set the timer. The phone rang and Joel's results were good so it was time to leave. I quickly packed some clothes, a sweater in case it was cool and a pair of shorts just in case the sun decided to shine, some books and my quilting so that I would have things to do. The drive down was nice, mostly sunny, a little hail and a bit of rain. We stopped in Abbotsford for gas and then went to Rachel's house but she wasn't home and we headed over to Wendy's. She served us tea and I think we made her late for choir practice. Joel and I got to Vancouver around 7:00 pm. We stopped at Whole Foods to stock up on meals and then went to check in at Ronald MacDonald House. Joel started making himself some supper and I phoned home to say goodnight to the boys and let them know we had arrived safe. I was tired and Joel watched a little t.v. but we went to bed quite early. I woke up this morning at 5:45, very refreshed and ready to do my couch to 5k. I had a drink and a little bit to eat. I like to run in the morning cause then I don't get a stitch in my side and there seems to be much less pain than if I run in the afternoon. I am on week 9 so I do a 5 minute warm up and then a 30 minute run and end with a five minute cool down. It was a lovely run, the streets are beautiful and lined with trees. I got back to RM house at about 7:15 am. Joel was still sleeping I had just enough time for a shower before getting him up and going to the hospital. I snuck back into our room to pick out some clothes and that is when I realized that I had forgotten to pack underwear. I was horrified..... just beside myself. I think I am still in shock. But that is not the end of it. I told Joel what I had done and that after chemo we were going shopping no matter what. Joel laughed and commented that at least I realized I hadn't packed any, unlike some people we know!!!!!! So, after chemo, when Joel was still giggling, he programed the GPS and it took us to No Man's Land. About an hour later I found a mall and made my purchase. You should be happy to know that my clothes have all gone thru the wash and are now in the dryer, I will be back to my normal self in a few minutes. And I don't think that I will ever forget to pack underwear ever again. See, it is much easier to post a humiliating story about myself than to write about Joel getting chemo.
I will try to take some pictures of our adventures tomorrow and maybe I will go hunting for chocolate.