August 19, 2011 (Friday)
Good morning / afternoon / evening everyone -
As you now know, Laurie's past, present and future challenges are on a blog. You may be reading this on the blog or in the original format. It is the same story but simply different forums.
Laurie knew what a blog was probably about 40 years ago. Maybe I am a bit off on the actual number but I would guess that it was about that long. The blog she knew then was actually spelt Blogg. This is the surname of some of her relatives. Like the name "Consaul", the name "Blogg" is fairly rare. Checking the Canada 411 website shows only 20 listings of the name across Canada. If you include family members in these households then perhaps you have 50 Bloggs. Since Canada 411 lists persons with listed land-line telephones only then add maybe 20 more Bloggs. Currently, Laurie's cousin who lives in Ohio, was a Blogg until she was married. Her aunt in Toronto was also a nee Blogg. She recently passed away in her 84th year. In Laurie's family, the siblings were predominately those with XY sex chromosomes so the number of Bloggs may be declining.
I am pleased that this blog is up and running. This may be the first blog that some readers have been exposed to. I have very limited interest in blogging myself unless the blog relates to the results of combining water, hops, barley and yeast together. There are some very good beer blogs and when I have the time do like to roam about them. If you have any suggestions about this blog then please get in touch with me. I will likely need to defer to Marian for the technical issues but any feedback is welcomed.
August 15, 2011 (Monday)
My day began with a list of tasks that I could do by telephone. However, once I began the various calls I was wondering if it was a holiday Monday. Messages left on answer machines hoping for an answer. Eventually the calls did come in. Our telephone number is for a cellular telephone so taking calls is easy if I am out in the garage or the garden or elsewhere. I have home care arranged for this Wednesday and also on Thursday for a couple of hours each day. Shopping and some other tasks outside of the house will be done while someone sits with Laurie. At this time, she should not be left alone in the house just in case something happens.
The most important and good news of the day is that Laurie's first radiation appointment is now scheduled. It will be on August 25th. The bad news is that it is at 09:00 at the General Hospital. If Laurie is even stirring at that hour then I am pleased. So, it will be a challenge for her to get up and be out the door for this appointment. This is also the day that she will begin the chemotherapy. Starting on that day, Laurie may be experiencing various ups and downs that she has yet not encountered. All provisions are being provided for right now. We will receive a longer term schedule at her first appointment. I guess that I am hoping for a non rush hour time but all things considered, any time is good. The treatments will be at the hospital that is further for us to drive. Good thing that it is the summer and not the middle of winter.
I keep her informed of the current day events and those planned for the next day too. She usually does not remember what is scheduled unless I remind her on a regular basis. She knows about her six weeks of treatment but can not relate to the possible side effects. I have mentioned these but not emphasized them.
Oh yes, the movers obviously received the message that the move had been cancelled (or they simply forgot to come). So it is a good thing that I did not place a wager on this. I may be buying cans of Old Milwaukee instead of my usual micro or craft brewery beer. Whew.
August 16, 2011 (Tuesday)
We had a house call from Laurie's home care case manager. This was very much welcomed. She explained various things to us that are very much needed for the practical and reduced stress living that we would like. We now know, for instance, that a nurse will come over the day after Laurie's first radiation and chemotherapy treatment. As well, nurses are basically on call 24/7 should Laurie require the level of care that I simply can not provide. This might be, for example, the administration by injection of an anti-nausea drug when the pills are not sufficient. Some explanation of how the drug plan is supposed to work was given. The very pricy drug that was prescribed is apparently not covered by the Ontario Drug Benefit Plan. The case manager is following up on the alternative of having the Trillium Foundation provide some funding.
I find it difficult to think that some cancer patient's drugs are fully covered and some are not covered at all by the Ontario Drug Benefit Plan. I assume that because Laurie has a rare tumor that the drugs are quite a bit more expensive than the more common cancer treatment drugs. I don't find this at all right and is in my view quite discriminatory. Sure, it would have been better if Laurie's tumor was more common and more understood and the drugs would likely be provided for free. However, this is not the situation. I am pleased that the case manager is aware of these drug programs and the limitations and options that are tied into them.
We saw Laurie's GP in the afternoon. She is a very pleasant woman who gave Laurie a huge hug on seeing her. The doctor remarked that Laurie is showing tremendous progress at this time. In terms of meeting the doctor in the months ahead that is really up to Laurie and to some extent myself. The doctor is receiving the hospital results and reports which is impressive. I had thought that perhaps the information the hospital doctors had was a long way from getting into the file management system. But it appears that some information is flowing. The doctor did notice that the dosage for the anti-swelling drug Laurie was prescribed is different if you look at the surgeon's prescription and what the pharmacy has given me. The difference is in fact double with the pharmacy upping the daily dosage. I have been following the surgeon's original plan so far. I will call the pharmacy tomorrow and get this issue sorted.
Back home for some tasty lasagna that arrived on the past weekend courtesy of one of our visitors. A supplement of some basmati rice and bits of chicken rounded out the dinner. Laurie headed for the closest padded horizontal surface for some well needed rest. It was a long afternoon for her. We watched another episode of Poirot and she nibbled on some cheetos which is one of her favourite comfort foods. Laurie is somewhat of a night owl so to see her going to bed at 21:30 is rather uncharacteristic.
August 17, 2011 (Wednesday)
The weather here in Oxford Station continues to be very summery. It is the type of weather that you just want to sit out on the porch and enjoy the day. That is exactly what Laurie did a couple of times. These were after lunch with her dessert and also with the 40 minute session with her speech therapist. This was the second visit and several new exercises were given. I did not stay for these as I thought Laurie would focus better one-on-one. I was preparing the shopping list as later in the day the home care worker would be giving me some respite for a couple of hours. I also moused around in the garage trying to determine what critter was trying to eat its way out and if it had accomplished its task.
Laurie is seemingly better in a number of ways. Although still quite tired she took the initiative twice to go outside on the porch. This used to be somewhat of a struggle for me to fully justify her moving from the comforts of a sofa to a stiff plastic deck chair. As well, her walking is improving. She does have a cane that I encourage her to use. This cane, or stick as I refer to it, is some reassurance as she is more independently moving about the place. It is interesting that the stick tends to disappear quite frequently. If she is in the living room and is going to the dining table I will inevitably ask her where the stick is. After a brief search it is found in the bathroom, in the dining room or possibly on the front porch.
The case worker showed up promptly at the designated time (hospital staff please take note). She is beginning to know Laurie and what she likes and is capable of doing. I am comfortable in that the three visits so far have been by the same person. So, off I went into town for some serious grocery shopping. I missed getting soup which of course happened to be at the top of the list. I also missed the Q-tips. I must have walked the pharmacy row items twice looking for this. While nearing the front of the store on the third time around I saw two bored cashiers so I dropped the thought of ever finding the Q-tips and opted for a reasonably quick check out. My orders tend to be large as I want to have things in the house that Laurie may wish to have. I have even had to put some of the juices in the downstairs beverage centre. Putting juices in here is a rather novel idea as the only beverages that have been there are those that are brewed, and typically from a craft brewery.
Laurie had a good dinner and this must help her physically. I am asking her if she can taste the different foods and she usually can. The reason I ask is that in the future one of the side effects of her treatments may be loss of taste. So, I am trying to get a pre-treatment idea of what foods she can taste. I have been told that some foods are good to retain the sense of taste, such as pineapple, when chemotherapy is being administered. We ended the day with another case solved by Poirot and a very tasty Italian dessert that I remembered to begin thawing at 15:00. She enjoyed both things. It is the first night she has elected to do some reading in bed - a mystery of course.
August 18, 2011 (Thursday)
Today the earth climatic systems began to rebalance the weather in our region. The wind has picked up and the temperatures have been in the low 30s. Laurie's morning temperature was up past 99 degrees (Fahrenheit of course) which was the highest since her first day after coming home. A hearty breakfast of oatmeal, some blueberry bagel, a bit of yogurt and a spot of tea seemed to help bring it down. And then of course it may have been the Tylenol that she wanted.
About 10:30 another home care person came for a two hour stay. This enabled me to drop a form off at Laurie's GP and get that soup and some other items that I had overlooked during yesterday's excursion to the grocery store. I even found the Q-tips today. I also went to one of two storage lockers that we rented in order to help with the move logistics. A friend on the weekend helped to almost empty one of them - the one with the boxes of books and books and more books. I completed the task today and they are now all back downstairs. It was very prescient of us to label each of the boxes with the contents and the weight beforehand. Now I can easily locate the DVDs as opposed to the VHS tapes and back issues of Trail and Landscape. Her care person had an easy time with Laurie. They sat on the front porch for over and hour. Laurie then found the living room couch until I came home with the things that I should have had yesterday - except for the storage locker stuff. The care person had been going through my recent copy of Canadian Home Workshop magazine when I arrived. I wonder if she found the article on reinforcing wood joints as informative as I did. Perhaps I will remember to leave a variety of magazines on the coffee table for the next visit.
Laurie continues to impress me with her appetite. Lunch was soup and salad with fresh watermelon and the remains of our friend's most excellent fruit bread. I read once that of all the fruits one can normally obtain in North American, the watermelon was the most nutritious. And I thought that these were 99.9999% water. Laurie lavished the watermelon and her eyes were hopefully thinking that I had more downstairs. Unfortunately not the case but noted for the next grocery shopping. The rest of the afternoon was spent resting and she indeed fell asleep. Even my grunting and groaning with carrying the heaviest boxes (about 22 Kg or 35 lbs) downstairs could not stir her.
An Italian themed dinner consisting of our friend's tasty lasagna, caesar salad and pistachio pudding was appreciated. She snuck off to a corner of the house and rested until we took the stairs to the basement where our TV room is. Seeing her walk the stairs with much more confidence is really good to see. She uses the stick just in case but her best friend is that sturdy hand railing that I put in some years ago (replacing the tooth-pick sized one that was installed by the builder). She is back in bed reading her mystery book now. I should mention that we do a ten minute speech exercise each day. She is excellent in some of the exercises but is challenged with others. I still find that to be a mystery - why naming the four seasons presents so much difficulty but that naming of the months is fine.
I have on occasion said something in French and Laurie has understood and responded in French. You sometimes hear of people who have incurred brain injuries to have knowledge of something that they never had before. I am just waiting for Laurie to start talking to me in Gaelic or tell me the first 1,000 number of pi.
August 19, 2011 (Friday)
In an effort to let everyone know how the week went, I have asked Marion to post the update before the end of the day. Perhaps this is a schedule that I should be working towards - the Friday afternoon update.
We were up three times last night for calls of nature which breaks up a good nights rest. However, as she is encouraged to drink lots of fluids then these calls are necessary. A good breakfast of bacon and eggs and half a bagel is far more than she usually eats when healthy. A little walk down the road in front of the house again in fine weather. The perfect summer day has returned. I don't imagine that a feather could be suspended in the calmness. She is now resting again on the magic dream couch. I foresee a late lunch and maybe just being able to persuade her to have it out on the back deck. There, she should be able to get her vitamin D and enjoy the day before settling down for another rest.
Still no word on the drug prescription situation. Now I know why our VISA has such a high line of available credit on it. I was hoping to hear by now rather than have to start making more telephone calls. There is supposed to be that Friday drop off sometime this afternoon with things that a nurse may need if she is called upon to come out. Can't imagine what may arrive.
We have friends coming over on Sunday which will be good for us both. Something to look forward to before the start of next week. The MRI is scheduled for 08:00 at the Civic Hospital. This will be hopefully followed up by a trip to the nearby greenhouse so that she can look at her recently trimmed grasses. Then it is off to the General Hospital for an afternoon appointment. This is to fit her head gear for the radiation treatments. This is a cross between a fencing mask and the old time goalie masks. Tuesday is the return of the speech therapist and Wednesday I have a four hour respite care time slot. Thursday and Friday see both the radiation and the chemotherapy treatments beginning. This week could perhaps be viewed as the calm before the storm. Time will certainly tell.
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