Laurie and Darwyn

I would like to begin this update by thanking those persons who have come to see Laurie and I and to those who have written words of sympathy, hope and best wishes. I am reading your notes to Laurie. I would also like to thank those who have brought flowers for Laurie and food down for me. I am not cooking with the same level of effort or enthusiasm that I did when Laurie was at home so having some ready to go meals is much appreciated. It has now been two weeks since Laurie entered the Kemptville District Hospital (KDH). The ward that she is on is quite small and I know of at least 10 rooms available for palliative care. Laurie's room is quite nice and is perhaps one of the nicest in the area. There is only one room past hers which means that not a lot of people traffic goes by her room. Some rooms have multiple patients which Laurie experienced in the Ottawa hospital stays. Not exactly ideal so I am thankful that Laurie is quite comfortably situated in a quieter room.

Laurie's health over the last week has not really changed. It was the first week there that she took a dramatic turn for the worse. Generally, the days are quite similar now. I am getting to the KDH by 08:00 now and have bought a monthly parking pass. This allows me to come and go whenever I wish and is much more economical than paying parking for each visit. It is much more convenient as well. Laurie is sleeping when I arrive and she looks comfortable. Darwyn is always close by her. I let her sleep though breakfast arrives between 08:00 and 08:30. When she shows sign of waking up I open the curtains and gently help to wake her. I call the nurse to help Laurie with the bathroom visit. It really takes two persons now to help Laurie since her walking, balance and sitting are not very strong.  I leave the room so that the nurse can assist Laurie to prepare for the day. The bathroom is a private one in the room and is quite nicely equipped with shower, toilet and sink. I get the breakfast ready for her return to the room.

Laurie has breakfast and her other meals while sitting in a nice chair. I prepare her meals for her but she often likes to take the spoon from me and eat herself. The same goes for drinking.  Breakfast can take quite a while. Laurie often eats everything given plus some Greek yogurt that I have brought in. The little refrigerator is now filling up with a variety of things to supplement Laurie's hospital foods.  After breakfast and the pills, we watch television. Laurie seems to enjoy the Food Network and she watches intently all of the shows, some of which are really quite interesting. Hopefully, I will be a better cook after watching these programs.

We stand up from sitting about each hour or so. I help Laurie with this as she can not do this on her own. The lunch usually arrives just after twelve. I selected the menu for both lunch and dinner while the breakfast was delivered. I choose the hot lunch since Laurie has difficulty with eating sandwiches of any kind. There are also pills and vitamins for lunch which are crushed and I mix into whatever food seems most appropriate to do so. I think that the majority of pills have a bitter taste so putting them in jam or apple sauce or yogurt seems to hide some of the taste. Lunch is typically a slow process but Laurie seems to enjoy the meals and there is a good variety of menus.  After lunch I call the nurse to help Laurie with the bathroom routine and also to get her into bed for an afternoon rest. Typically Laurie is in bed and falling asleep by 13:30. I stay with her until she and Darwyn are asleep.

Perhaps the most difficult times for me at the hospital are in seeing that the majority of the other patients are much older than Laurie....perhaps in their late 60s and 70s. There is a different ward for those persons who are older. The other hard time is when I see Laurie walking. She requires assistance as her balance is not steady. She moves very slowly but she works hard with the physiotherapists when they take her down the corridor. I see a lot of determination in her eyes although this must be so very difficult for her. She continues to have unbelievable courage and I know that my efforts would not be so motivated.

Over the years, Laurie and I have spent a lot of time walking and climbing. We have climbed the highest mountains in Vermont (Mansfield at 1,339 m), New Hampshire (Washington at 1,917 m) and in New York state (Marcy at 1,629 m). We have walked many kilometers of trail in Ontario and Quebec and in the New York state Adirondacks and New England Appalachians. Laurie has climbed Ben Nevis, the highest peak in the British Isles at 1,344 m and Slaettaratindur at 882 m which is the highest mountain in the Faroe Islands. She climbed Newfoundland's second highest peak (Gros Morne at 807 m) as well. No wonder we felt so tired getting back from our holidays! So, to now see Laurie trying to walk as best as she can down the corridor is really heartbreaking.

I leave the KDH for a few hours after Laurie is having her afternoon nap. I do some shopping in Kemptville if required and then return home for a while. I am doing her laundry every two days so that she has a nice fresh supply of day clothes and pyjamas. When I arrived back in the afternoon one day this week Laurie's (and Darwyn's) blanket from home was missing. This is a special blanket that one of our friends passed along to us. It has an embroidered moose on it and it very soft and warm. Being white the staff doing the laundry just took it and tossed it in with the other items to be laundered. I was able to retrieve the blanket and gave it a good wash at home before returning it. The afternoon time has also given me a chance to get the cars and the outside of the house ready for our winter. So far we have had no snow but the temperatures are now starting to fall into the minus Celsius level at night.

The drive between the KDH and home is usually 12 minutes unless I hit rush hour and the trip takes a minute or two longer.  I leave the house to drive back to the hospital by 16:15 arriving well in advance of her dinner. Laurie seems to have a good appetite for dinner as well. I tend to cleanup whatever may be left on the plate since I do not eat dinner until I return home. I do have a snack however while at home in the afternoon. After dinner we watch more TV with the Food Network being the channel of choice. We take a little walk between shows so that Laurie can look down the hallway to see what might be happening. Usually it is pretty quiet as others are probably watching TV too at that time.  Between 20:30 and 21:00 the nurse arrives to help with getting Laurie ready for bed.  I stay with Laurie in the room as she is falling asleep. Sometimes she is not quite ready for bed so she watches TV from her bed for a little while. By 21:30 she is typically almost asleep.

I have come to know and like most of the nurses attending to Laurie. There seems to be many nurses and it is infrequent that the same nurse attends to Laurie on more than two or three twelve hour shifts per week. The bad experience I had with the very first nurse seems to be behind us now. I still find some inconsistency in Laurie's care that should not be there. This can apply to some nurses not bringing the pills at the correct time or not knowing that pills should be prepared. Sometimes the pills arrive whole instead of being crushed. I administer all of Laurie's pills since I have the time and the nurses always seem to be ten minutes behind in something. Most nurses have told me that they appreciate the time I spend with Laurie which results in her being somewhat of a low maintenance patient for the nursing staff. The doctor drops by each day, or is supposed to, to see how things are going. They rotate each Friday for a week's work in the palliative care ward. One day this week I asked the doctor about the results of Laurie's blood test for her dilantin level. He said that it had not come back but he would let me know. He actually called me later in the day and we talked on the telephone about the results which were OK. So, generally good nursing and doctoring for now but I am still apprehensive about things.

Laurie's sister has come up twice to the KDH. It is very good to have her here and I really appreciate the extra time it allows me outside of the hospital. Logistically, it can be difficult for her to get here since she works in retail. As well, the drive is about five and one-half hours if the weather and the roads are in good shape. She is currently sitting with Laurie as I am at home writing this update.

For those that regularly check the blog, my intention is to post updates about every two weeks now and include some current pictures.

Please keep thinking of Laurie and arrange a visit with me should you be in the area.

long way home

Laurie's brain tumour is classified as a Grade IV glioblastoma multiforme. When this diagnosis was made by the pathologist in July of 2011, it was communicated to us that it is a serious illness. Although various treatments can be applied, the full recovery from such a brain tumour is rare. Since the last update about two months ago, Laurie's health has deteriorated significantly. This was especially the situation over the last ten or so days. Over the past couple of months we have met with the radiation oncologist, the chemotherapy oncologist, the surgeon and her GP on a number of occassions. Laurie had two MRIs that showed tumour progression to the right side of the brain and along the ventricles. The prognosis for Laurie was not very good.

 

On Friday, November 2nd, 2012, I took Laurie into the Kemptville District Hospital (KDH) for a stay in the out-patients area. The plan was that I would get some rest and that Laurie's condition could be better assessed over a long period of time. On Wednesday, November 7th Laurie was to return home. However, this will not be the situation. Laurie's is now in the palliative care ward of the KDH under the recommendation of the chemotherapy oncologist and her GP. In speaking with the GP this morning, I was told that Laurie would pass away in her room at the hospital. There is nothing that anyone can do for Laurie at this point. In the Fall 2012 issue of Brainstorm (a newsletter of the Brain Tumour Foundation of Canada), there is a parallel story of a man with the same disease. His glioblastoma was detected in January of  2011 and he died in early May of 2012. He was only 24 years of age. Although no one involved in Laurie's health care has told me how long she may live I suspect that it will not be very much longer. She is barely able to walk and can not walk unless escorted. She is eating a little although this is a slow process and one that requires direct assistance. She has no cognitive abilities that I can report on but she does smile when I arrive in the mornings to see her. Her focus seems to be on a television channel although she is likely not able to comprehend the program.

 

Laurie has a single room which is comfortably equipped. Her large window faces south which is the direction of Oxford Station. The surrounding environment seems quite peaceful for the most part. She is quite tired and sleeps after lunch until late afternoon. I try and arrive about 11:00 and help with her lunch. I stay with her until she is ready for a sleep. I return in the evenings after dinner until she turns in. 

 

If you are in the area you may visit with Laurie at the KDH. She is on the second floor in room 109. Do not expect Laurie to indicate any recognition or to communicate. She will be tired but hopefully will be able to sense your being there with her. This update is on the short side since I really can not say anything more than I have.  Thanks to those of you who have continued to read the blog and for your thoughts of Laurie and I. I know that she would appreciate this very much.

 

Mark 

 

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

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.

 

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.

 

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.

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.