Welcome!

Laurie had a serious brain lesion that was surgically removed on July 24, 2011. It was uncertain exactly what the disease was and to me, these days were really the fight for her life. After the surgery, Laurie spent two weeks in an Ottawa, Ontario hospital. This period was full of events relating directly to her and to other patients and aspects going on in the hospital during her stay. Laurie came home on Friday, August 5th, 2011. Since being at home, events have settled into a routine but not without the ups and downs of recuperating with a rare brain tumour. Her story is one of hope, struggle, patience and above all, courage. The current update is presented at the top of the page with her day-by-day story presented from the bottom upwards.
This story also has pictures of Laurie. She is a woman of many interests and dimensions. She and I love to travel and September has been our favourite time of year to do so. The trips taken over the past six or seven years have seen us in places like western and central Scotland, Iceland, the Faroe Islands, New Zealand, Australia, Cape Breton, Charlevoix, Ireland and to Newfoundland a couple of times. The first things that Laurie always packs are her plant press, silica gel bags, binoculars, loupe, botany reference books, bird books, hiking books, note books and always a good raincoat. If there is any room left she packs some clothes. You can usually recognize her at the airport because she is one with three or four layers of clothing on.

Tuesday, 4 September 2012

Long weekends and road trips


Long weekends are not what they used to be.  While we were both working, long weekends gave us the opportunity to take a road trip out of town for a few days or stay at home and work around the place. Now, long weekends typically mean that the home-care scheduler has to be rearranged and this typically results in a reduction of home-care hours for the shortened week. I have managed to obtain another two hours per week for home-care which is good. This additional time should result in less stress in getting home from Ottawa on Mondays and will allow me to do some shopping on Saturday which was virtually impossible to do with one hour.
Laurie's situation appears to me to by more-or-less stable and has not changed much since the last update. She did have a good MRI taken on August 8th. This MRI has a long time in coming but contrast was injected which resulted in better images being taken compared to the last time. The MRI report indicates that lesion has decreased in size but also that there is some enhancement or progression of the disease in a different area of the brain. In meeting with the oncologist in August, he felt that Laurie should continue with chemotherapy and that another MRI should be done in October. Laurie did complete her August five day chemotherapy cycle alright. We meet with the surgeon in mid-September to review Laurie's situation in general and her MRI in particular.
Laurie's speech pathologist is continuing to come to the home every two weeks. She and Laurie work for about 90 minutes on a variety of exercises to help Laurie regain some of her brain functionality. Laurie's ability to convey her thoughts remains a large challenge. I can not report much progress myself but others who visit on occasion have noted some improvement. Physically, Laurie is doing better over time. The length of our walks have increased as well as the frequency. We are getting out and about more often as well. Her strength and balance is improving but it is still important that she carries her cane with her outside. There are times during some days where she is quite confused about things. I am not sure why some days are better than others in terms of cognitive abilities.
The nurse is coming now once per month to check Laurie over and we usually see the GP once every two months. Laurie's dilantin level is being checked every two weeks and her dosage has remained the same for quite some time now. In the past, this dilantin dosage was a real issue.  Laurie needs to rest almost every day and this is partly due to the interrupted sleep the night before. Usually a nap of an hour to 90 minutes occurs in the mid to late afternoon. This gives me some time to fiddle around with my backyard project or catch up on other things outside. I did buy a new and bigger chainsaw for the tree clean-up which is progressing along alright. I received a DVD on "Chainsaw techniques and maintenance" which, for some reason, Laurie is not really interested in watching.  We do watch about one hour of TV each day - usually something that we have on a DVD. Although an avid reader before the operation in July 2011, Laurie is not engaged in books and only really looks at magazines and local papers. She can read the text but she does not have the ability to absorb and recall what she has read. This is something that I find is very difficult.  I continue with giving Laurie  verbal queues for her to pronounce something. Once a small queue is given she is usually able to say the word.
Since the last update we have had visitors over which Laurie seems to appreciate. A couple of our nearby friends brought over some frozen and fresh foods which was very nice of them. Our last visitors kindly brought lunch with them so that Laurie and I enjoyed some different food. It was a nice change for me in that I did not need to think about what lunch would be and then prepare it. Not a big deal in the scheme of things but little things like lunch being provided make a bigger difference now. The emails that continue to arrive from those thinking of Laurie are appreciated as well.
As I write this, I must note that Laurie started her radiation treatments on September 1, 2011. The "advent" calendar is still on the refrigerator door and Laurie does look at it sometimes. It is indeed important to remember the past as well as looking forward to the future. Septembers were usually our holiday period and this is something that I will especially miss. We have a combined air mile total of over 500,000 miles and with changes to the rules and regulations we must begin to use these miles or lose them. Good grief. It seems like some politician is now working with our air miles company. So, I am hopeful that Laurie will be well enough to someday resume travelling - at least to places in Canada. We do meet with a specialist related to Laurie's incontinence issue and I hope that something positive will come out of this. If this problem can be minimized then further travel becomes more of a possibility.
Laurie is having a cat-nap now and I am about to begin making one of my "comfort" dinners that Laurie quite enjoys (see "recipe" below). I like it too because there is lots of left-overs which makes future meal preparation quick. We are eating lots of salads, especially the Greek, and also one using spinach and arugula. The BBQ is used about twice a week now and I guess that I am becoming a better chef as I seem to be dropping less food through the BBQ grill (and onto the deck too). I appear to have mastered the BBQing of mini potatoes which Laurie is very keen on. It is good to see her eat and enjoy her meals. 
In summary, it seems that the summer has been good to Laurie and I. Although some issues continue - like difficulty in sleeping at night - Laurie's health has not appeared to decrease. I would report her as being stable in many respects with some improvements in others. I am hopeful that the surgeon will be able to give us a positive interpretation of the last MRI. Please keep your positive thoughts and prayers for Laurie coming as our favourite season of autumn arrives.
"Comfort Dinner" Recipe - basically reminiscent of your macaroni and beef and toss in whatever you have lying about in the cupboard. Fry one large onion and in another pan fry about 500-600 gm of lean ground beef. When the onions are done add to the ground beef. Add secret seasoning (i.e. Montreal steak spice). Add a 796 ml size can of chopped tomatoes, preferably organic (or fresh from your neighbour's garden). Cook two cups of 100 % whole wheat fusilli pasta to al dente. Add pasta to the pan with the other three ingredients. Add more secret spice according to taste. Cover and simmer on low heat from about 45 minutes. Serve in a warm bowl along with seasonable vegetables or a salad on the side. It's that easy and makes many servings. Enjoy.
Thank you for reading the update -
Mark

Monday, 23 July 2012

BIG!

I mentioned the movie "The Big Year" in the update posted on July 13th. Well, Laurie and I watched the movie again last week and thoroughly enjoyed it. You pick up on things that you missed in the first viewing which makes the movie a little different in places. We both liked watching the film and I keep wondering exactly why I keep paying almost $80.00 a month for satellite TV.
Sunday, July 22nd, 2012 marked the one year date of Laurie's first brain operation. Between the symptoms first appearing at the CBA meeting in Halifax in July and the diagnosis made on July 23rd, the operation was quickly scheduled for Sunday, July 24, 2011. I remember looking at the MRI taken about 01:30 Saturday morning that showed the massive tumour and asked the doctor if Laurie would be alright. He said that he was not sure but that it did not look very good. That was the first time that I cried. The post-surgery pathology report was not very good either so I was very apprehensive then and to some extent I still am. This past twelve months has indeed been a "Big Year" for Laurie and myself. Big for many reasons. The tumour was been a life changing event for us. That alone makes it a Big Year. However, other reasons why the past year has been big is because of specific things. For instance, anxiety and concern has never been bigger than it has been. Big surprises have occurred in the hospitals and in some of the treatment sessions - some good and some (too many) not so good. A Big lack of quality sleep has affected us both for the past year. With the coming of the second operation in December, 2011, our lives were somewhat like a rerun of the July 2011 experience but significant differences are evident. The Big shock in December 2011 was the surgeon's view that Laurie would likely live for only a few months more. However, she would not be in pain during this time and I should try and make her as comfortable as possible at home. Some consolation I know but this was a terrible period for me - the waiting to see Laurie's physical and mental health decline. I kept rereading Desiderata which was posted on the refrigerator and thought of all the things that we wanted to do but had to put on hold. For how long I really did not know. This was a Big period of stress and anxiety and mind wandering thoughts about the present and the future. We had a Big amount of mail and deliveries to the house after Laurie's first and second surgeries. This helped Laurie in a number of ways knowing that her friends and colleagues around the globe were thinking and praying for her. Many of Laurie's colleagues at the Canadian Museum of Nature were a Big help in ensuring that Laurie remain on staff at the CMN during her illness and also in helping with all of the administrative paper work required. I wish to thank them for their contributions in making a difference to our lives. Many of the readers of this blog have also made an important influence along Laurie's Road to Recovery.
Laurie is thankfully still here with us and she continues with her monthly five day chemotherapy pills. In fact, she completed her seventh session on Saturday night. In celebration I cooked steaks on the BBQ. What is significant here is that this is the first BBQ we have had this year. I must be the last Canadian guy to get the BBQ fired up in 2012. Laurie enjoyed her steak and potatoes and cauliflower. She continues to eat well and I think that this has helped her physical recovery. We had another BBQ on Sunday night which was very kindly prepared by friends who drove down from the Ottawa area on Sunday to see us. This was really appreciated since it gave me a break from cooking. It also gave us some welcome variation on dinner. This is not the first instance of their generosity and I would like to thank them again for thinking of us.
Laurie's current recovery is more prolonged than after her first operation where I feel that progress was very good in contrast. Having a Big Year for us may mean that something important or marked happened in a single day. This could be Laurie saying something that she has not said in over one year for instance. It could be that she offered to dry the dishes one evening - something that comes out of the blue so to speak. The Big Year has had these Big moments but there have been days when I was unsure if I would make it through the day. Laurie is a very determined person which is great but it can be cause for concern too. It means that there needs to be a watchful eye on her throughout the day. Some things that have disappeared have been found but others remain hidden away somewhere. Laurie does not recall where she puts things so the important point is to ensure that nothing really important (like pills) is left out in the open.
Generally, our lives seem to be like the movie "Ground Hog Day" where each day is virtually identical or predictable to the next. Our days are certainly not like they were before Laurie became ill. It has been a very long and trying year and it is difficult to imagine that for some people our past year has been their way of life for many years. I remain somewhat nervous of Laurie's possibility of having another seizure although her medications taken since last February seem to be working alright. I do carry pills in the car along with water just in case there is a reoccurrence.  Being vigilant of things like this is really necessary and has become a second nature activity. We would like to travel on longer outings but this is not very realistic right now. I hope that a meeting in August with a specialist to review Laurie's incontinence issue will be beneficial. Solving this problem would certainly be a big improvement for both of us.
The careful administration of a variety of pills each day makes me wonder how long Laurie will need to continue taking them. For the moment, I guess that the time will be for an indefinite period. Through the past year Laurie has never questioned her situation with me. Perhaps it because she is not able to find the words to communicate her thoughts or that she is so determined to overcome this illness she is staying positive. She has at times been frustrated but not overly so. I have been the one with the tears and wondering about all of the "what ifs?" As we move on from the first anniversary of Laurie's operation into the second year I can only hope for Laurie's continued recovery. Her safety, happiness, health and well being are really all that I am concerned with. Whatever I can do will be done. We ask those of you who have been thinking of Laurie to continue to do so. The collective positive thoughts are appreciated.
I will endeavour to keep the postings relatively current and thank those for visiting and reading about Laurie's Road to Recovery. One of the comments recently written was very nice. It was made by a past student at McGill University who happened to reside next to Laurie in Laird Hall. She has written a paper for the Journal of Applied Microbiology and wanted to include Laurie as a coauthor due to her contributions. I believe that Laurie did assist with some aspects of the research but in a more helpful way as opposed to being an intended author. The paper entitled "Hydrocarbon degrading potential of microbial communities from Arctic plants" is hopefully not going to be Laurie's final contribution to science. The Arctic, Science, Research, Botany, Nature, Travel and  Curiosity in general ....this was Laurie's world and one that I wish every day that she can rejoin one step at a time.
DESIDERATA
Go placidly amidst the noise and haste, and remember what peace there may be in silence. As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly; and listen to others, even the dull and the ignorant; they too have their story.
Avoid loud and aggressive persons, they are vexatious to the spirit. If you compare yourself with others, you may become vain or bitter; for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans. Keep interested in your own career, however humble; it is a real possession in the changing fortunes of time.
Exercise caution in your business affairs; for the world is full of trickery. But let this not blind you to what virtue there is; many persons strive for high ideals; and everywhere life is full of heroism.
Be yourself. Especially, do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment it is as perennial as the grass.
Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with dark imaginings. Many fears are born of fatigue and loneliness.
Beyond a wholesome discipline, be gentle with yourself. You are a child of the universe, no less than the trees and the stars; you have a right to be here.
And whether or not it is clear to you, no doubt the universe is unfolding as it should. Therefore be at peace with God, whatever you conceive Him to be, and whatever your labours and aspirations, in the noisy confusion of life keep peace with your soul. With all its shams, drudgery, and broken dreams, it is still a beautiful world. Be cheerful.
Strive to be happy.

Friday, 13 July 2012

 
Life here in Oxford Station is certainly quiet, and hot. Dry too. The temperature has and continues to be in the low to mid 30s in the shade. The forecast calls for about the same temperatures for the next week. We can use some of the rain that has been over the UK for quite some time. Life is also stable most of the time. Laurie has been gradually improving in her physical health and is now able to walk stairs confidently and we are taking longer walks once again down the road. The continuing challenge remains with the cognitive skills. Laurie has difficulty in recalling events that took place five minutes ago such as what we ate for dinner. She at times has appeared to be more frustrated than I have seen her. Laurie has a speech therapist visit every two weeks and the two of them work away on exercises for about 90 minutes. I am within ear distance of them working and it sounds like Laurie is doing well in some recognition areas but has trouble in others. I am hoping that with these sessions and our own work on improving verbal communication that Laurie's speech improves.
 
There has been some delay in getting an MRI for Laurie. Back in May, the oncologist had put in a requisition for this test. At our June meeting with the oncologist, the MRI still had not been booked. He seemed a little surprised by this and said he would look into it. A week then passed. I called the MRI clinic at the Ottawa Hospital and asked when Laurie's appointment was scheduled for. Well, there was no appointment set. So, I told the clinic person that NOW was the time to book an appointment. According to the oncologists and the surgeon, Laurie was to have an MRI about every three months. The last one was done in March and that was only partially successful in obtaining good quality scans. So, Laurie was overdue. After a few excuses by the clinic person to put me on hold, we finally booked a time for Laurie for early in August. According to the clinic staff member, the MRI report could take up to three weeks to get back. I had concerns about this because we need a follow-up appointment with the surgeon after the MRI report is available. So, we now have the surgeon scheduled for mid September. If there is anything that I have learned about the medical system is that being passive or too patient is usually going to result in disappointment and frustration. I know that everyone involved in Laurie's case is busy but unless you pick up the telephone and ask questions then large amounts of time pass by before action is taken.
 
Today we saw the GP and she felt that Laurie was looking very good. Laurie had her hair trimmed between now and her last appointment which the doctor noticed. I had five issues to discuss with the doctor and once again being proactive helps. Since Laurie is still having some incontinence problems I asked if we could see an urologist. This situation of being incontinent has being going on since last December. Within two hours time after leaving the GP's office we had an appointment for the specialist. I am hopeful in Laurie's progressive recovery but I think the involvement of the urologist is something that someone on her health care team should have been thinking about. The main thing is that we are now booked for late September. The other main issue for Laurie is getting a solid night's sleep. This is still proving to be a challenge even though she has some prescription sleeping pills. She will try another type starting next week and I am hoping that she will sleep better at night and less often during the day. She continues to eat well and is alert to the bird and wildlife activities outside. She continues to have difficulty in putting a name to a bird or a squirrel or a chipmunk though.
 
We are taking more short driving trips each week as Laurie seems to like being out and about. She certainly likes driving in the car listening to the music that we listened to in the 1970s and the 1980s. She sings along with many of the songs which is interesting because she likely could not say what she had for breakfast that morning. This past weekend we drove about one hour to Perth where we visited an antique show. She seems to be very interested in some things and we bought an old Bunnykins dish from 1940 for a price that would make me the "shopper of the day". We went to a restaurant for lunch which turned out well. Besides Laurie attempting to eat her lunch with two forks, she seemed to enjoy the meal and the surroundings. I need to plan where we can stop for washrooms that are convenient for both of us. At any point Laurie could indicate that she needs to stop and go so some thought goes into our route before we leave. We also have visited Prescott which is situated on the St. Lawrence River. She likes this location especially since we pass a Tim Hortons along the way - which is rather good if one needs to stop for something besides a coffee and donut. The large freighters pass along coming from one unknown port heading towards another destination. I often wonder about this and the people on board who spend many weeks at a time away from their families and friends.
 
Laurie is quite curious and wants to participate in things going on around the house. She is now watering the flowers outside almost each day. She has been watching my back yard project with the large tree branch that fell a while ago. I have undertaken the clean-up myself since the insurance company was less than helpful. With the warm weather I try to spend anywhere from one to two hours per day cleaning up. It is necessary to go into the house each half-hour or so to ensure that Laurie is OK. Laurie and I try to watch about an hour of television each day as well. This gets her downstairs and she seems to like simply watching something. We did watch the movie "The Big Year" which she thoroughly enjoyed. The plot is about three men of totally different backgrounds and careers who attempt to surpass the North American record for the number of different bird species found in a year. It is quite relevant to one of Laurie's interests and the movie is quite funny and well acted.
 
This past June second was a special day. It marked the fourth anniversary of Laurie's graduation from McGill University with her PhD. Her degree hangs in our den which is somewhat in disarray. Most of the contents of this room are still in boxes in the basement. I have done very little in the way of unpacking since last June. June is probably Laurie's favourite month. It is the time of year when she went north and did her field research. Long days and bearable temperatures meant that she worked on her collecting and research that would keep her busy for many months later in the year. I think that her colleagues who are currently up north on the Soper River on Baffin Island in Nunavut will miss her as much as Laurie misses being there.
 
Next week Laurie starts her seventh session of chemotherapy. This is when she takes her pills each day for five straight days and then stops for 23 days. According to the clinical trials with the drug she is taking, the oncologist said that the effectiveness may now be minimal. After taking this chemotherapy for six months there may be little benefit in continuing. However, he will keep Laurie on this drug especially since a good MRI has not been available for a long time. I am happy with this decision although every drug has side-effects and if there is truly little benefit in continuing then perhaps the best thing to do is stop taking them. So, I expect that next week Laurie will be more tired than usual. She is tolerating the chemotherapy quite well considering the affect this drug can have.
 
I will be posting another update ten days from now. I know that many of you are on, or planning to be on, summer holidays soon. A nice vacation was always something that Laurie and I looked forward to and I especially miss not having these. I wish you safe travels and sunny skies.
 

Wednesday, 30 May 2012

Every step of the way

I must begin this update with an apology for the length of time that it has taken for this note to be produced. I am disappointed in myself for not having news out earlier - much earlier. I will strive for more periodic updates over the coming months. I wish to thank those who did email specifically to enquire about Laurie and to those who made the trek to Oxford Station. Our friends from St. John's, Newfoundland, visited over the Easter weekend. It was great to see them and they were kind enough to bring up some items that we had left at our house there way back in the spring of 2011. Our house there has now been sold. Various day trippers from Ottawa have been highlights of Laurie's day I think.

In summary, Laurie has had no seizures since the last one in late February. Since being home, my impression is that she is not regressing and not really progressing in her recovery. Physically, she is mostly alright but still uses a cane while walking outside. Her balance is not always 100 percent. Emotionally, Laurie seems quite good. She is not getting depressed but sometimes she becomes anxious. I have learned to see anxious moments developing and realize that this is part of her recovery process. Cognitive skills are still quite weak. Her ability to speak in complete sentences is still not there. She is having a speech therapist in for about 90 minutes every two weeks. These sessions are very difficult for me since basic communication abilities are lacking and it is not listening to the Laurie that I know. However, Laurie continues to work on becoming better. Many unusual things take place as Laurie is not aware of what she is doing. Not a day goes by when I look at something and wonder how it got there or how did that happen?  Overall, however, each day is much like the last and likely the next. She is usually tired enough to have a rest in the afternoon and sometimes in the morning. Sleeping soundly at night is still a problem and it is not usual for us to be up two or three times over the night. We have a registered nurse come every two weeks to see how Laurie is doing and take her vital signs. Home-care continues, usually, for eight hours a week. It is not a lot really as I typically spend the time shopping or doing house related things. Now, yesterday was a bit of an exception to the routine type of day.

Mondays are days when there is a home-care person here for a five hour period. This is really useful since I can get up to Ottawa, if necessary, or just catch up on other things in Kemptville or even around the house. When I returned, the home-care person pointed out something on Laurie's hamstring. Well, I looked at it with a magnifying glass and it was a tick. The tick lookes firmly attached so we went up to the local hospital ER. Well, after two hours of waiting we were called in to one of the rooms. About twenty minutes later the doctor and an intern came in. Then another doctor came in and the three of them were quite interested in seeing the tick. After some discussion the two doctors were able to cleanly extract the tick. It will be sent to a lab in Winnipeg to see if it was carrying Lyme Disease. Chances are that it was not, but we should find out in a few weeks. I will keep an eye on the area to see if the redness fades away or stays. Kudos to the home-care lady for spotting the tick in the first place.

We have had several follow-up appointments with the oncologist in Ottawa since the last update. Nothing has changed in the chemotherapy prescription. The program is that Laurie takes chemotherapy pills at home five days in a 28 day cycle. The week that she is on the pills tends to be more challenging. She is quite a bit more tired and has less appetite. Her dilantin level is still up and down but blood testing has until lately been once every two weeks. Recently, her level is elevated and a dosage change has been given. Hence, until the dilantin level is back in the normal range weekly trips to the clinic are done. The next appointment with the oncologist is in mid June. We are hoping that an MRI will be scheduled.

With the coming of spring and summer like weather, we are out walking a little more now. We can sit on the front or the back deck and listen to the various birds and animals. We have left up the bird feeder as it is still an attraction for Laurie. We have at least five male rose-breasted grosbeaks along with a number of females, some lingering black-capped chickadees and white-breasted nuthatches, mourning doves, the odd hairy or downy woodpecker, gold and purple finches, sapsuckers and some blue jays and juncos too. We have three barred owls making a home near the house - exactly where we are not sure. Last week we were lucky to have both a male and female northern cardinal at the feeder for a while. Critter-wise, the family of chipmunks seems to enjoy the area as do the red and black squirrels. We had an abandoned baby racoon last week which we tried to look after but he, or she, is now gone. The place is looking pretty good considering that we have been without rain for quite some time. We are actually having an approaching thunderstorm right now with a steady rain so being on the computer writing this is probably not the smartest thing to be doing.

Laurie and I went to the local garden centre and Laurie more-or-less picked out the plants that she wanted. I did the planting this year and tried to involve her where possible. It would have taken less time just for me to do everything by myself but it was good to see her interested in the plants. After all, we really do have quite a bit of time to do things but our days do seem to be quite fragmented. That is one difficult part. Our pace in life has dramatically changed where we are essentially at home most of the time without being able to do things that we once did. Our bikes go un-ridden and the kayaks un-paddled. Our hiking boots are gathering dust. I am hoping that there will be a time when Laurie will be able to engage in things that we normally did, at least partially or sporadically.

Well, I decided it prudent to turn the computer off as the storm gradually got closer. Good thing. The power went off, then on, then off and then on. A tremendous lightening explosion rocked the house followed by a heart-rending crash. Lightening struck our large old (100 year plus) maple in the back next to the house. A huge section of tree crashed taking with it some fairly large trees. Branches missed the house by only a meter or so. We took refuge in the basement until the winds subsided and the torrential rain became a light shower. Upon investigation, we have serious tree damage in the back and branches all over the place. The composter is pancaked. Could have been worse but the place isn't looking so good anymore....sort of like a small tornado touched down momentarily.  My concern is that about one-half of the large maple tree is now missing in the middle where it looks like the lightening hit.  Called the insurance agent where I was passed to so many people asking for our policy number that I now know it by heart. Waiting for something to happen now from them. Normally, I would try and tackle the clean up by myself or with a friend, or two, or three. However, I can't be outside working on that now with Laurie inside by herself. Something tells me that this is going to be another long challenge. I hope that bad things are not coming in threes.....ticks, trees.....

It has now been more than ten months since Laurie was first diagnosed with a brain tumour. I keep thinking back to that day when our lives completely changed. Many of you have been with us, in one way or another, since that day in July when Laurie entered the hospital. It is good to know that she has support from friends around the world who keep her in their thoughts. Please keep doing so.

I hope that this short update has given everyone a sense of where things are with Laurie. I feel somewhat better now having composed this. I think back to that terrible day in December when the surgeon felt that Laurie only had a few months left. I am fortunate that his feelings did not turn out to be correct. So, each new day continues to be rather special here and no matter what happens to us our main focus is to keep Laurie safe and happy and to work on her becoming healthier. No matter how long her road to recovery, I will be beside her every step of the way.

Monday, 5 March 2012

Each day is special.......

Since the last update on February 13th, most of Laurie's time has been at home and functioning in a daily routine. Weekdays and weekends blend into the same. The ability to go outside has been hampered by icy conditions which have hit much of eastern Ontario and other parts of the province. We have been going for the weekly blood testing, usually on Mondays, with the results back on Tuesday. Laurie's dilantin level is still above the normal range even though a reduction in her daily dosage has been given. This factor is quite frustrating since weekly blood testing will need to continue until she is stable. She did complete another drug recently which will likely help to maintain a constant level of dilantin. She is eating quite well and resting at least a few hours each day.
 
On February 28th we were to meet with the oncologist in an Ottawa hospital. Just prior to leaving, about 09:15, I was helping Laurie finish up in the bathroom. As she turned towards me I could see in her eyes and face that she was about to have a seizure. As she began to have it, I carried her into the bedroom and laid her on the floor. She was shaking and sick with her breakfast. The seizure lasted between one minute and one minute and 15 seconds. Although the first seizure back in January was scary because I had not seen her have one, the second one was quite traumatic. I decided to call 9-1-1 and they arrived about 20 minutes later. After some checking of vital signs, they took her to the local hospital. Laurie should really be taken directly to the hospital where she is under the care of her surgeon and the oncologists but rules are rules and they take her to the closest hospital.
 
On the way there, Laurie had a second and shorter seizure. In the hospital she had a third seizure. I had a really difficult time with this one. She had blood and urine samples taken. Lots of questions were asked. I kept thinking that this is pretty much all a delay in getting her into the place that she should be. So, after a few hours, the ambulance took her to the Civic Hospital. The crew that took her was more experienced than the average ambulance service given that she could have another seizure. I was thinking that her dilantin level was low but had not heard back from the clinic yet. When I did, her level was reported to be high at 91. I could not understand this and the ER doctor was scratching her head on this too. While they were putting in a catheter to collect a urine sample, I asked the nurse if there was anything unusual "down there". She said that it had appeared that Laurie's bladder "had dropped". Not quite understanding what this meant, the reply was that there appears to have been some damage done, which I have been aware of since she left the hospital after her second surgery last December. I believe this is why she is incontinent. We do see her GP on March 6th specifically to see what is going on "down there" and what can be done about it.
 
As Laurie was taken to the Civic I returned home to pack a bag expecting that she would be at least one night under observation. When I got to the hospital ER, I went to the window for "all other questions". The person there was speaking with a colleague but did see me approach and stand there. However, she continued to chat to the colleague about vacation things. So, after about 15 seconds, I asked where my wife was and how to get to her. After giving Laurie's name, the lady said "oh, they are waiting for you to arrive". I simply shook my head at this as they had my telephone number. Having to wait for this remark had steam pretty much coming out of my ears. Laurie was in the resuscitation area, bed 2. Hearing this I was moving quickly through the hallways not knowing if she was OK or not. Thankfully, she was in a bed being administered over by a nurse. More blood testing (what happened to the results from the other hospital?) which meant more needles and pain.
 
After a series of visits by different specialists, it was decided that Laurie would remain at least on Tuesday night. So, about 23:15, I left for home worried that Laurie would have more seizures. The drive home was difficult and my mind was certainly not on the quiet road.  In the morning, I left the house and avoided the rush-hour arriving at the hospital about 09:20. Back to the room where Laurie was but was not now. Of course there was no one around to ask. More steam coming out of my ears. Eventually, I saw a nurse and went over to ask her. She said that she thought Laurie was in the next ward but I would have to ask the nurse who was on break. No way I said. I wanted to know where Laurie was and now. How can a nurse not show some interest? I think that this falls within the compassion category for which they should have in them. 
 
Laurie was in fact moved over to the emergency side and was sleeping when I went into her room. She was on an IV. She had not experienced another seizure which was good news. More doctor visits and assessments and questions. She did have a CT scan done and the results did not show any bleeding or enlargement of the tumour area....both good findings. After lunch, it was decided that Laurie could go back home but with an additional prescription for a second kind of anti-seizure pill. There is a pharmacy in the hospital so I told the nurse that I was going there first and then collecting Laurie for going home. He said that was fine and that they would dress her and prepare her while I was getting the new pills. After twenty five minutes I got back to the room and Laurie was sitting in a chair ready to go. She was waving furiously at me with a smile on her face. So, with the assistance of a reluctant personal support worker, we took Laurie to the car in a wheel-chair and left for home.
 
Little did I know that before they changed her, no one took off the 12 or so sticky adhesive patches from her. These were put there to hook up the monitoring devices by the paramedics and staff at both of the hospitals. I know for certain that when I left to get the pills, there were four nurses sitting right outside of Laurie's room chatting and laughing far too loudly. So, why did no one remove all of these sticky patches? Getting them over took two days with the use of rubbing alcohol and a lot patience. Boy was I steamed about this.
 
Laurie regained her strength over the rest of the week. On Sunday, March 4th, she had two visitors and this seemed to raise her spirits. The two weekends before she also had some visitors and this appears to make her quite happy. She does get quite tired afterwards and will spend more than a few hours resting.
 
Laurie is now back on her chemotherapy cycle of five days on and 23 days off. She winds up the pills on Sunday night and so far she is tolerating these quite well. The anti-nausea pill is very strong and seems to keep her from being physically sick. However, she must take a total of eight chemotherapy pills since there is still a back order on a specific pill dosage that she was prescribed.
 
I did call the nurse on March 2nd and she came out to the house to see Laurie. The nurse is quite thorough and even takes my BP which has been higher than Laurie's for two weeks running. The nurse said that should Laurie have another seizure then I can call her and she or another nurse will come around. Going to the hospital is probably not really required for every seizure event and I was told when I need to call 9-1-1 and when I can call the nurse in. I am really hoping that the two anti-seizure pills will prevent additional episodes and that I don't have to call anybody. The other option is that I call the Ottawa hospital and tell them that I am on my way with Laurie because she had a seizure. In theory, this should get her "immediate" attention when we arrive at the ER area. Again, I am hoping not to have to do this either.
 
So, the coming week is hopefully going to be a quiet and routine time. Besides the blood test and the appointment with the GP there is nothing else scheduled and I'm hoping that it stays this way.
 
Thanks again to those of you who sent flowers, cards with best wishes and who came out to see Laurie recently. All of these actions raise her spirits and give me pleasure knowing the kindness that is coming to Laurie.  Laurie's 52nd birthday is on March 22nd and I am optimistic that we will reach that day one at a time. Around here, birthdays are usually rather special. Although right now, each day is simply special and wonderful no matter how diffiult things may be.

Monday, 13 February 2012

Laurie's Fight for Life

It is usually good to begin an update with some positive news and there is some to report. This concerns the level of the anti-seizure drug called dilantin that Laurie is taking. It seems that her dosage is now stabilizing her dilantin level which is great. The normal range is between 40 and 80 and her blood sample last week showed a level of 58. This is much better than the low and the high readings recently seen. I could tell that her level was back to normal by the little things taking place about the house. So, everyone is pleased that this issue now seems to be resolved. Laurie does have another blood test on Feb. 13th to recheck the dilantin level. If the reading is alright then the blood testing will move to a two week schedule instead of one. Hurray.
 
Also on the up-side is that Laurie continues to impress with her eating. I am beginning to wonder if my culinary skills have improved that much or if eating is just a different activity, in what is normally a pretty uneventful day. She is having three good meals a day and drinking lots of water and juice. I no longer give the "milkshakes" to her as her weight is more than usual and she now has to wear my pants out to appointments. I need to do some more pant shopping for her.
 
Laurie's physical strength is pretty much unchanged since the last update. For our visit with the surgeon last week she had to walk quite a long way from the hospital parking lot to the hospital. It was another long walk from the hospital entrance to the neurological clinic. This was a challenging walk not only for the length but also because of the slippery conditions. Ottawa has had quite a bit of freezing rain and there has been a build up of ice on roads and sidewalks. This makes for slow negotiation but she managed. Good thing that we did not hurry since the surgeon was running over one hour behind schedule.
 
Today we had a visit from one of Laurie's Toastmasters friends. He brought along a special TM pin for Laurie and also a letter to indicate that she had attained the level of Silver Advanced Communicator. The actual pin will follow and I am so very proud of her achievement. I have told her so every hour or so over the past two days.
 
Since the last update, Laurie completed a five day cycle of chemotherapy. She did very well in handling the drug and was not physically ill. She had to take a large number of capsules this round because the hospital pharmacy had run out of the 20 mg capsules and substituted with the 5 mg size. I wonder what they would have done had they run out of the 100 mg size? She takes 235 mg each day which costs about $400.00. Unbelievably, to me anyways, the oncologist said that Laurie should have a blood test done and that this could be done there - at the Queensway Carleton Hospital. I bit my tongue and said that we preferred the Kemptville clinic where people know Laurie now. I thought about the poor judgment in his advice seeing that the Queensway Carleton blood clinic was not able to convey to her doctor her blood results which ended up with her having a seizure in early January. I sure hope that his choice of chemotherapy is better than his choice of blood clinics.
 
On February 8th we sat down, eventually, with the surgeon. He asked Laurie how she felt and she responded "fine. He asked if her right side felt OK. She said "yes". Then there was silence. I had certainly expected more in the way of questions and perhaps some physical examination to be performed. But nothing. So, I began with the first of my five questions. I took my time in asking each question and took time to write the rather short responses from the doctor. One important question concerned the fact that she is still incontinent. The response was that it is likely the tumour causing this situation and that there is nothing else that can be done. I did request that a urine analysis, including a culture, be taken on Monday when Laurie is having her blood sample done. I still feel that there may be another explanation for her condition.
 
Generally, Laurie is not improving in her daily functions and in her communication. If anything, there are days when things are very challenging for her. The surgeon's view is that chemotherapy is really the only realistic treatment for Laurie. Her exposure to radiation was essentially given at the maximum level. A third surgery, although previously mentioned as a possible option, would likely not be done. This is because the tumour appears to be growing but towards the inside of the brain and not towards the outside. An MRI will be done in March to see exactly what, if anything, is happening to the tumour. The only assessment of the effectiveness of the chemotherapy is the MRI. I think that better communication from Laurie would also indicate some decrease in the tumour but the surgeon did not seem to agree.
 
This last visit with the surgeon did not result in positive news for Laurie. The prognosis is such that unless the chemotherapy works well then she will lose the battle with the brain tumour. This could happen within weeks or a month or two. This timeframe has been known to me since she came home last December 20th when her future was described as being "a few months". These three words keep coming back to me and then the emotion sets in. The online literature that I have read seems to concur with the surgeon's perspective and I keep hoping that things will be different for Laurie.   
 
Given the recent news and Laurie's condition, I would suggest that those of you who would like to visit Laurie here at home get in touch with me to set up a date and time. It is best for Laurie to have one person or persons visiting per day. The duration of the visit could be up to one hour or a little more depending on her strength and attention. Mondays are not good since we have a five hour home-care person that day. Thursday afternoons are also not open as we have a three hour home-care person then. Otherwise, arriving after 10:00 or after 13:30 would be alright. We get dinner going about 17:00 hours and would request that no evening visits take place.
 
When the blog was first posted, the story line was "Laurie's Fight for Life". After the first surgery and her radiation and chemotherapy treatments she seemed to be on a "Road to Recovery" but with the occasional detour. Laurie is indeed fighting for her life now. All I can do is keep her safe and comfortable, give your good food and help with the physical movements around the house and to the appointments. The doctor asked me about having Laurie go a palliative care place. My feeling is that she should be here as long as it is possible - in the place that has been our home for the past 18 years. This depends on me being able to manage her on a daily basis. My preference will be to maintain the way we have been living our lives since last August and to take and treat each day as special. Laurie does not speak much but she does seem to understand light conversation.
 
Please do get in touch and come out to our home and see Laurie. This will make her happy.  Although your visit will result in her being tired later on, your being here is a continuation of a life that she once knew and enjoyed.  Talk to her about the good times and the times that you shared with her. She will be unable to carry a conversation but her expressions and some verbal response will be positive for her. It is a very difficult way to end this update but although she is so very courageous, strong and determined she is in a very difficult position now with our hope placed on the success of the chemotherapy.
 
Directions from Ottawa - I will send these when arrangements for a visit are in place.
 

Thursday, 26 January 2012

Six months later - taking one day at a time

I hope that you all had a peaceful and healthy holiday and that the new year is being favourable to you. Although Laurie was home for Christmas and the start of the new year these were times that did not seem to mean very much to her. Santa came for us both and Laurie seemed to engage in some of the usual Christmas past times. Of significance was her enjoyment of the traditional food and treats. We still have the small Christmas tree up and the lights on. The two stockings are situated not over the fireplace anymore, but in another living room location. These are reminders of a special Christmas. Although for the most part we have been resting at home, things have not always gone as well as hoped. I don't know exactly what I was hoping for but more progress, as she had after her first surgery, would be nice. My main objective is to keep Laurie as comfortable and safe as possible while monitoring and assessing her physical signs.
 
Sunday, Jan. 22, 2012 marked the sixth month of Laurie's initial admittance to a hospital for her then unknown illness. Six months ago our lives changed. Six months of difficult times interspersed with smiles, laughter, hugs and of course, tears. At several times over the course of a day my eyes well up. I think of Laurie now and everything that we have done over the years and my emotions let go. She is not around when then happens as I am doing as much as possible to keep giving her positive energy. She is eating three good meals a day and I must thank those visitors who have kindly brought us a nice variety of good healthy food. Laurie must like the new selections as I certainly do. One friend recently brought along what must be the world's largest lasagna. It is very nutritious and seems to be an ideal food for lunch or dinner (but not for both meals in the same day!).  Laurie is also drinking a lot of juice and water throughout the day. She likes coffee but she is only taking one cup of decaffeinated coffee. This is due to an advisory on caffeine consumption on one of her medications.
 
Something happened to Laurie during her second hospitalization in December in terms of a urinary infection. She is still coping with being incontinent. This certainly does not help in her gradual recovery and daily activities. I must say that having gained a lot of experience with incontinence products, that I now place these in my top ten inventions of all time. I used to pass by these products, as well as those nutritional supplements, in the drug and grocery stores without much thought. Now, I carefully read and compare the various products making sure that the size, gender and the absorbency factors are all correct. Same scrutiny goes for the meal enhancement beverages (we call them milk shakes). So far the products are holding up quite well. She continues to take a nutritional drink but the quantity has been scaled back. She is gaining some weight, which I attribute to her lack of exercise and high consumption of juices and lots of food and of course her prescription drugs. Reducing the amount of the high caloric beverages is one way to help control her weight.
 
I have bought her some new fleecy light outdoor things that she wears in the house. She seems to like these and I do too, seeing that the post-Christmas holiday prices are excellent in the outdoor storewhere we like to shop. The length of pant legs is usually quite long however and I am certainly not a tailor. One of Laurie's two weekly home care workers has offered to do some tailoring next week on these pants while she is here - because it is a safety issue. Typically, Laurie is very quiet and sleepy while I am getting eight hours of weekly respite time. I head into Ottawa or more closely, Kemptville, to do shopping and other things. It was difficult to receive regular home care time each week until I went up the ladder and explained to Laurie's case manager that the service in the past was not sufficient and that communication was very poor. I obviously spoke with someone who cared enough, or was important enough in the hierarchical scheme of things, since the quality of care is now improved.
 
I started this update indicating that Laurie's recovery had not gone as well as hoped. In fact, there was a quite scary incident that took place in early January. It was even scarier than the following....
 
It was in the summer of 2008 that Laurie was on a field expedition down the Hornaday River in Tuktut Nagait National Park with some colleagues collecting plants and taking photographs. I was at home in bed one night when I heard the front door knob being turned and worked. My heart began to beat a little faster and I laid there wondering what the heck was going on. Naturally, a break-in was my first thought. So, I got up and picked up one of the fireplace implements on the way to the front door - in my PJs of course. The door knob was still being disturbed as I approached the door in the darkness. I failed to see anything through the windows in the door and thought that someone must have been crouching and fiddling with the door. As I got a closer look and my shaking increased, I saw a large furry raccoon hanging off of the door knob. As I breathed a tremendous sigh of relief, the critter continued to try and elevate himself up the door. There was a bird's nest under the porch roof on top of the window trim and I guess that the raccoon was looking for a midnight snack. I carefully pushed the door open with the fireplace poker being close at hand. Once he felt that his chances of a successful climb were over he causally walked back into the forest and I climbed back into bed. Later that year we bought a front screen door.
 
And then there was Reykjavik in 2009. We decided to lavishly indulge a couple of nights in the downtown Marriott. This was a pretty nice hotel and compared to the B and Bs and small inns that we usually stayed in was quite the place. Parked the car right outside the main doors for the stay and walked Iceland's capital city for two days. Then came the check-out. I had been quite pleased to have negotiated a very good price at the hotel seeing that it was September and there were no large conventions in town those days. Having paid a Holiday Inn price for this hotel was a real deal.  The clerk presented the invoice in an Italian leather case while I got my credit card ready. The room amount was originally agreed upon in Icelandic Krona which I was used to paying out and doing mental currency conversions so I knew, more-or-less, the Canadian dollar equivalency. The bill presented was in Euros and I rather did a double take on the bottom line. I knew taxes were high but something else was amiss. As Laurie was studying the hotel lobby artwork I was somewhat hyperventilating. As the clerk was busying herself with something else, I knew that there was a serious error here. I looked at the room number and it was not ours. I also noticed the dates of the stay were incorrect. As it turned out, it seemed like the Sultan of Brunei, Warren Buffet or some such person had been staying in the royal suite for a month or two and I got their tab. Hai carumba! After a quick review of things, the clerk produced the correct bill and I had enough Krona left over for some coffees at Cafe Paris. Laurie came back wondering what I was up to and I said that everything was now fine and off we went after paying my agreed upon price (plus extortionate and not previously known taxes) to enjoy some good Icelandic brew and baked goodies.
 
An even more scary incident took place on January 6th, 2012. On January 3rd, Laurie had a blood test for a medication called dilantin. This drug has been given by me since last August when Laurie was released from the hospital after her first surgery. The dilantin level is normally in a range of 40 to 80 (some units here). A low level of dilantin increases the risk of a seizure and too high a level means that the person can go "toxic". Having received no call from the doctor who ordered the blood test, we felt that Laurie was in the normal range. I found out at 02:00 on January 6th that she was not. After just having returned to bed after a trip to the bathroom, Laurie had a seizure. Now, we use "carpe diem" as part of our email address which translated means to "seize the day". I was certainly not expecting a seizure in the night! It was truly frightening and the incident lasted about 45 seconds. I held her in my arms not knowing exactly what would happen and only thinking the very worst of things. After the seizure ended, I called 9-1-1. The paramedics arrived about 20 minutes later and attended to her. I was happy to have them there and they gave her oxygen and took her vital signs. She slowly regained her strength but had absolutely no idea what had happened to her.
 
They took Laurie out on a paramedics chair into a very snowy night. It was very quiet outside as the snow fell heavily. I was going to follow the ambulance to the local hospital once I got a bag of things together that she might need. I watched as the ambulance drove away through the falling snow with the flashing lights sending a cascade of colour onto the snow and trees. There was no need for a siren for which I was happy about. I was very anxious and had some difficulty in getting organized for the trip into Kemptville. In the hospital Laurie had a second seizure at 04:00. A nurse was with us at the time and the doctor came in. I was totally in panic mode at this point as three or four hospital staff were there with her.  She was given an IV of dilantin and some other IVs to settle her down. A decision was made to transport her to the General Hospital that morning about 07:30. The weather was very difficult to drive in and I was happy that Laurie had bought her Subaru Forester (with good winter tires).
 
Laurie was first located in the emergency care area. The on-call oncologist that weekend came in and we talked about what had happened to Laurie. He seemed very good as a doctor and it was interesting that he wore a mask the entire time. After more blood samples (some were taken at the local hospital as well), Laurie was taken to a room on the fifth floor for observation. It was a single room which pleased me. While I did the admitting paperwork, I was told that Laurie would have a single room based on her coverage - if one was available. The room was quite nice and came with a good view. This was a Saturday and the hospital floor was on weekend was quieter than during the weekdays. She did have an MRI done on the Saturday. The tumour appeared to be the same size as it was the last time that she had a scan done. I guess that I was pleased with this result although a better one would have been that the tumour was smaller than before.
 
At this point I did not realize why Laurie had the seizure, nor exactly did the doctor. So, keeping her in the hospital for 48 hours was the plan. I certainly did not want to have her back home again right away if she was going to have another seizure. That weekend Lisa, Laurie's younger sister, came up and stayed with us. She can testify that the level of nursing was virtually non-existent that weekend. You have heard of the RN, the registered nurse, but have you experienced the NN, the negligent nurse yet? Or the NCN, the non-communicative nurse? I will not relate the truly irresponsible manner in which the staff treated Laurie. I did take the doctor's suggestion of taking Laurie home Monday on a Leave of Absence. This meant that she was officially still registered in that same room should she need to go back. The official discharge would take place on Monday by telephone should I feel that Laurie was doing alright at home. That Sunday night at home did not see me sleeping very much. Any small noise from Laurie had me sitting up and turning on the bedside light to see if she was OK. To some extent, I still do this but I ask her if she is OK before turning on the light. After a few days being back at home, I decided to call the unit manager of the fifth floor and relate some of the problems during Laurie's two night stay. I had noted in point form beforehand the various things that the NNs and the NCNs did not do for her care. He spent about 15 minutes on the telephone apologizing for what had happened and had assured me that he would be taking my issues up with those involved. He told me that he would report back to me but so far no call has come.
 
What is most distressing about this entire ordeal was that the seizure was entirely preventable. The blood test (taken at the Queensway Carleton Hospital) was done on Tuesday, January 3rd about 13:00. The results of the blood analysis should have been available to the doctor on Wednesday. This is especially the case if the specific level of her dilantin was outside of the normal range. So, according to the doctor, Laurie's report was sitting somewhere not being reviewed when it should have been. In my view, and here comes the venting, some idiot or idiots are not communicating when it is absolutely necessary to do so. IF, these idiot(s) had performed their job in the health care field, then Laurie would not have had a seizure. Her dilantin dosage could have been immediately increased on Wednesday and the seizure would not have occurred. So, I called the Queensway Carleton and tried to speak to someone about this. I got as far as leaving a voice-mail, to which, ten days later, no one has called back. Not only did Laurie, and I, experience this most terrible of events, but the cost to the health system was preventable too.
 
So, here we are on January 24th. No sign of a reoccurrence of a seizure. However, Laurie's dilantin level was toxic and she had been experiencing some strange things as a result. Last Thursday, her dosage was reduced and today her blood sample was taken. It takes five days for an accurate reading of dilantin following a change in the daily dosage. We find out tomorrow if she is now in the acceptable range or further adjustments will be made. I think that she may still be riding high or perhaps at the top end of the normal range. Rather than waiting for the doctor's assistant to call with the results, I will call them by mid-afternoon if I haven't heard. This will be my standard method of getting the results of any blood analysis. It goes without saying, but I will anyways, I will never get a blood sample done at the Queensway Carleton Hospital. What is especially irking is that Laurie was on her chemotherapy cycle of five days on and 23 days off. She had completed her third day of pills when the seizure happened. She did not complete the entire cycle as the oncologist decided to suspend the last two days of pills. Our health care system seems to be lacking some serious patient care.
 
Moving on. Next week we meet the oncologist who originally ordered the blood test and is responsible for her chemotherapy. I hope to begin the second cycle that evening. We did consult the radiation oncologist about two weeks ago. He said that the chemotherapy is the best strategy at this point. If the scans show that it is not performing as desired, then possible pin-point radiation may be done. However, she has had so much radiation that it becomes risky to perform much more. As well, a possible third surgery could take place. Having the least obtrusive treatment is certainly preferred but we really want the most affective one to be done. So, where is Laurie now? It is difficult to say but she is really not very well along the road to recovery after the six months of treatment and recuperation. Even though she has looking pretty good back in November, the tumour is still present and causing her memory loss and speech and recall problems. Physically she is doing reasonably well. She continues to not ask the tough questions and not complain about her situation. She is certainly a very strong willed and determined person who continues along with me at taking life one day at a time.
 
We meet the surgeon on February 8th - a week earlier than originally planned. I believe that this advancement of the meeting date is more connected to a family spring-break than to Laurie's condition but we will know soon enough. The surgeon is one of the doctors on Laurie's cancer team along with the two oncologists and her GP. I keep thinking that there must be a team leader - someone that I can call when I feel that Laurie should be assessed. I feel that the time spans are too long for her in terms of receiving scans and having meetings with the doctors. She is not exhibiting much progress in her mental faculties which points back to the dilantin problem or the tumour situation or possibly both. I simply have a difficult time thinking that waiting for periods of three and four weeks for something concrete to take place is not beneficial for her.  These are issues that I will raise with each oncologist and the surgeon when we meet.
 
A big challenge for us currently is that Laurie has great difficulty in sleeping at night. Two different sleeping pills have been prescribed but they seem to have little effect. So, we are up about every 90 to 120 minutes after turning in. Night is seemingly turning into day and day into night. This shift of sleeping cycles is becoming very exhausting. It is one of the reasons that I have been so long in getting an update posted. I always seem to be in the middle of something else and when I do have some time, that is, when Laurie is truly sleeping, I feel so tired that it is difficult to write. I should be having a cat-nap at the same time that she is. Her GP is concerned about this and said to me last week that she would like to visit the house sometime this week. Still waiting for the call to come to arrange for the visit.
 
So, this is where things stand. Before winding up, I must relate something that happened to us on January 3rd at the Queensway Carleton Hospital. We were waiting quite a while for the blood test to be taken (a further waste of time it seems) when I heard a familiar voice. I looked around and there was our neighbour from 18 years ago. He has cancer and was there with his wife. He was also waiting for a blood test too (I wonder if he ever got the results?) and we chatted about things and life for a while. He is the same age as myself and continues along being very optimistic that 2012 will be a good year for him and especially for Laurie. I can only pray that he is right.