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.

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.

 

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.

 

Merry Christmas from home!

 

Laurie is now home. We left the hospital on Tuesday evening (Dec. 20) moving slowly along the corridor in a wheelchair. She is much more comfortable at our home and is enjoying peace and quiet that simply can not be found in a hospital ward.  I am so glad that she is home for Christmas. We received about 1 to 2 cm of snow last night which hopefully will remain to give us a white Christmas. Our new year begins with an appointment with the chemotherapy oncologist. There are no plans for further radiation that I know of. Laurie will need to continue to battle hard, so very very hard, in 2012. I will endeavour to keep the blog up to date as much as I can. This depends on many things of course - the first being to help Laurie in whatever it is that needs to be done.

 

Thank you to those who have supported Laurie in one way or another since July when her illness became known. Whether it be an email, a telephone call, a card or flowers Laurie has been receiving these messages of hope, prayer and best wishes with interest. It helps me to know that so many people are thinking of Laurie.

 

Enjoy your holiday season and we offer you our wishes for a happy and healthy new year.

 

Best regards and Merry Christmas from Oxford Station -

 

Mark and Laurie

communication is key!

I have formulated some conclusions based on extensive empirical study. One - two out of five nurses are competent enough to nurse. Two - common sense and communication, particularly by nurses, is so important but also so very lacking. Three - time budgeting is a mystery to which no adequate or convincing explanation has been given. Four - the ratio of nurses to patients does not mean a whole lot. And fifth, stay away from the grilled food in the cafeteria including the visually and olfactory appealing stir-fry dishes. The experiences of today only served to support these conclusions.

 

However, the main subject of the update is of course Laurie's present health. Much has happened since the last posting. Laurie was moved to the seventh floor Neurological Inpatients Area on December 12th sometime after I had left that evening. There was some scuttlebutt about the NOA that Laurie would be moved but this had been cancelled on at least two occasions when I pursued the subject. Apparently, the cost of having a patient in the NOA is $1,200 per day. However, my information source may be as reliable as some of the nursing staff and be way off (OK - I won't dwell on this topic...).  So, arriving on Tuesday, December 13th I found myself in Laurie's room which offered a nice view towards Agriculture Canada. She knew this and realized that her grasses were close by in a green house.

 

Now being up on the seventh floor Laurie was set to receive some physio and occupational therapy. She has had visits by these people each day since being there and in the eyes of these people she is getting stronger and healthier and able to indicate progress in several areas. Her appetite is very good with three pretty good efforts each day at eating the food which is typically ground - ground chicken / beef / turkey with mushy peas / carrots / broccoli  and cream soups of the mushroom / carrot / broccoli variety. She is consuming a high protein liquid beverage produced by a major pharmaceutical company in Canada. She is eating desserts - usually a fruit (pieces or in crisp form) and a pudding / Bavarian mousse. Fruit juices prevail as does milk and water. The feeding tube that Laurie endured for so long was removed on December 15th. It seemed that the removal of the tape caused her more discomfort than did the removal of the 70 mm length of plastic hose. I sort of watched the on-goings here but was just happy that this day had come and she turned another corner. Generally, she remains very quiet but seemingly to understand or follow a conversation. Her speech was the most difficult element to come back after her first operation and it appears to be the hardest as well now.

 

We had a visit from a staff member of her radiation oncology team and also from the chemotherapy oncologist himself. The main point of what I was told was that Laurie's surgeon and the oncologists were laying out the ground work for the next step(s). At this time the plan has not been disseminated to me. However, it seems that Laurie may have more of the Temodal and for more days in a month than the previous session of receiving it (five days each month). I did ask to speak with the surgeon today (Dec. 19) and apparently he would see me late this afternoon. However, he did not come by the room. Hopefully he will tomorrow and I will be able to get answers for the five questions I have prepared.

 

On Saturday, December 17, Lisa, (ed. note: Laurie's sister), returned. I told Laurie the day before that she was to have a visitor on Saturday. About 10:45, Lisa arrived. Laurie opened an eye a while later, but did not recognize her and she drifted back to sleep. An hour later, at lunch time, Laurie realized who was there and she smiled and seemed quite pleased. During Lisa's vigilance, I snuck out and got the oil changed in the car and had some lunch in the cafeteria (the lemon sole is recommended). As is typical, Laurie is not alone until past 19:30 or so. Earlier in the week, I left at 23:00 as the nursing staff must have been attending a conference or a Christmas party someplace and there was no one to help her (sorry but I can't help this.)

 

Lisa drove up to the hospital first thing on Sunday morning (Dec. 18). She was there to get a great parking spot and to assist Laurie with breakfast. I did a fairly massive shopping expedition to the local grocery store. What a good time to shop actually. There were as many store employees working as there were customers. Not only did I get the choice of a great parking spot and some the vegetables, I actually was able to buy some stuff on sale that usually has been long gone whenever I shop. So, a few hundred dollars later (about five carry bags worth) I headed to the house and found space in the refrigerators and freezers for everything. Then, I was off to Ottawa to join Laurie and her sister.

 

We had a nice time together. Lisa departed in mid-afternoon for her drive back to Gravenhurst. Fortunately, the weather here has been amiable to driving but it sure does get dark here fast (yes, I know, the Winter Solstice is darn soon). I stayed until about 19:40 and made it home by 20:20. I wish the drive every day was like it is on Sundays.

 

Today (Dec. 19) was a tough day for various reasons. However, a lack of common-sense, poor time allocation between patients and non-communication issues will inevitably lead to various disappointments. In particular, Laurie has been moved from a comfortable, (as much as you could get I guess), room with one other woman to a room with two other women. I couldn't get a satisfactory reason for this change from the nurse. So, I packed the meager belongings that we have for Laurie there in preparation for a move later in the day. After Laurie's lunch, I wrote a note to the nurse indicating that I would be back by 13:40 as I was going to the cafeteria in search of lunch. When I got back to the room at 13:35 or so, Laurie was gone. Good grief. The nurse could have told me that Laurie was being moved imminently and I would have stayed. So, I got pretty huffy and puffy when asking where Laurie was. The morning nurse did later apologize for this but I could not accept her explanations very well. I was pretty miffed then and continued to be when Laurie's new nurse seemed to spend an inordinate amount of time elsewhere. This nurse was supposed to have four patients. Three were in the room where Laurie was. So, I presume that she spent 80% of her time in another room with the other patient. My blood pressure reading would have been impressively high at this point.

 

Towards 19:00 and nurse shift change the nurse gave the lady beside Laurie a hot cup of tea and then she left. So, about two minutes later, this woman is screaming about 1 meter away from Laurie. Well, she dropped the tea cup on her chest and was getting scalded. Ummm, maybe the nurse should be enrolled in Common Sense 101 again. I got a hold of a nurse by going into the hallway and they took over. The nurse alarm for this patient was no where in reach. These events give an idea why I spend so much time at the hospital. Laurie has a big enough hill to climb without all of these types of daily obstacles popping up for her to resolve.  

 

I do not know if Laurie will be coming home for Christmas. I cannot see her remaining there much longer given that there are no medical interventions taking place. She has no IVs, no daily blood tests, no more than one or two BP and temperature readings a day and no heart monitoring. She is eating well and walking a little. Bed rest is part of the equation and she can certainly do this much better at home. At one point in time, it was mentioned that Laurie may go to the local hospital near our home to convalesce. I have not heard anything for a few days now on this and I can't imagine her being moved there at this point. For some reason, in the back of my mind, I feel that they will tell me tomorrow (Dec. 20) that Laurie is being discharged. A day's notice would help but I am prepared for this outcome.  Laurie is certainly not in the Christmas spirit but I will try and make the best of holiday for her whether she is in the hospital or at home. The presents that I have bought her (I always pick things up over the course of the year and squirrel them away) are in a packed-away box in the basement. I guess that I can always gift wrap a 500 ml tub of Ben and Jerry's ice cream.

 

We have received an impressive number of Christmas and get-well (again) cards. I have not opened any of these yet. I will wait for Laurie to be here and I know that she will enjoy this thoughtful and often overlooked or undervalued part of the holidays.  I do hope to have another update posted by this Friday to let you know how and where Laurie is. Did I mention that the nurses will be on a holiday schedule starting Friday......

 

Long and winding road....under some construction.

The long and winding road. Like all roads, Laurie's road to recovery is leading somewhere. After what feels like a four-day weekend at the hospital, I can report that Laurie is going uphill, albeit in first gear and but finding her way into second. An important element in her gradual improvement since Friday has been the presence of her sister, Lisa. Lisa arrived on Friday about noon and has sat with Laurie and I up until late this evening (Dec. 11). Laurie gave us a smile when Lisa arrived. So many brain activities had to happen for her to do this.  It is nice for both Laurie and I to have Lisa with us and we hope that she may be able to return to Ottawa soon.

 

Laurie has remained in the same single bed room in the NOA ward. I am very pleased with the level of care that Laurie received from both the day and night nurses on Saturday and Sunday (Dec. 11). If I ever find myself needing hospitalization and nursing then please send her weekend nurses my way. They were compassionate, understanding, professional and practical. They understood Laurie's needs and Lisa's and mine as well. The weekend doctor was also very helpful in many ways. Everyone involved in Laurie's care, including the orderlies, were excellent over the weekend. I sincerely hope that tomorrow will be a continuation of this.

 

On Saturday Laurie had another MRI scan. This involved transferring her to a gurney from her nice hospital bed and being taken down one floor in a small elevator. She is not comfortable in getting the MRI due to the length of time that it takes and the noise it creates. I sit just outside of the room and could use some ear protection myself. She does receive a headset that minimizes the bass noise. The scanning procedure takes about 45 minutes from the start of the bed transfer to the return to the NOA. After the scan was done, Laurie was wheeled down a hallway with varying light intensities and noises. She showed signs of becoming sick at one point and a friend of ours who happened to be there resourcefully found a little baby washing pan (think Christmas turkey) and Laurie used this. My heart breaks whenever something like this happens to her.

 

Laurie's swelling and facial colouration were greatly reduced, if you contrasted between Friday morning and Sunday night. This improvement has also allowed her to reopen her left eye and at times it is more open than her right. Her bandage was removed that covered her suture involving 35 aluminium staples. She is still tethered to numerous pieces of equipment including one or two IV drips, a heart monitor, a blood oxygen monitor, blood pressure equipment and a nasal feeding tube. The PICC (Peripherally Inserted Central Catheter) was removed on Saturday but she still has, intermittently, a urinary catheter. With all of these wires and hoses coming from her one would think that she was a character in a movie involving cyborgs. The multiple daily visits by the nurse included an assessment of her strength. Her arms, hands, legs and feet are slowly getting stronger. This is due in large part, I think, to the fact that she is receiving a highly nutritional beverage on an ongoing basis. As she was not able to physically chew and swallow, this method of feeding was started and with some early success. Her memory is slowly getting better. She does not speak very much but when she does it is done purposely. For instance, a "good morning" and a "good bye" were said today but with very little spoken in-between. Although her speech is very limited, it is cognitive speech and fully understandable.

 

She remains in her bed throughout the day. The weekend staff ensured that she was as comfortable as possible and were particularly interested in addressing any issues related to headaches. Laurie does give an indication when she is experiencing pain and this was responded to using codeine or Tylenol. I am pleased to say that these administrations are not that frequent and they appear to be effective.

 

Laurie will likely have a CT scan early in the coming week. I have not talked to the doctor about her Saturday MRI but will likely hear something on Dec. 12th or 13th. She continues to take medication for the reduction of the swelling in her head and for reducing the chance of having a seizure. These are drugs that she been taking at home but now they are given in higher dosages. She continues to wear the "squeezers" and is on a blood thinner too. Both of these measures are in place to reduce the chances of a blood clot occurring. So, as you have read, there are many things taking place at this point. Perhaps the most intrusive is the twice daily taking of blood samples. This is something that I have a great deal of difficulty with. Tonight, Laurie had three samples taken from each arm using needles. The nurse was excellent at finding the veins but it does create a lot of stress for Laurie. I understand that these samples will likely be obtained once per day beginning shortly. If Laurie has any sign of a fever then the blood is also subjected to culture testing.

 

The one big difference between Laurie's first post-operative time and this one is that she is much weaker. I attribute this to her having had thirty radiation sessions along with chemotherapy followed by a recent five day period of high chemotherapy treatment. These must have reduced her strength in multiple ways and her recovery is affected by this. Thus, as the surgeon said, Laurie needs more time to heal. The surgeon did see Laurie on both Dec. 10th and 11th. He asked her a few questions and seemed to be satisfied with Laurie's responses, whether verbally or physically. I am hoping that the therapists take it slowly with Laurie this coming week. I realize the need for her to begin to move about and talk but these must be approached carefully and respectfully.

 

I have received many emails recently asking how Laurie is doing. I hope that those who have written and those who are reading along about Laurie's Road to Recovery find the some comfort in this update. I know that I am feeling better as Laurie undoubtedly is about her progress. Minute by minute, hour by hour and day by day, I see just how much courage Laurie has in her.

 

A Brief Note From Lisa:   Mark had asked me to proofread this and said I could add something if I notice that it was missed.   (Hopefully that means he won't delete it after he sees it ! )    Spending the past 3 days at the hospital with Laurie has made me realize how amazingly patient and selfless Mark has been throughout this entire ordeal.   Day after day of sitting, waiting for a few minutes of awake time to exchange a smile, worrying, asking questions, making sure the level of care never falters and feeling Laurie's pain everytime blood is taken or a bandage is removed (the weekend nurse called it "a free wax job") has taken a toll on him as well.    

 

At one point Mark was leaning on the rail of the bed, holding Laurie's hand and he nodded off.   At that point Laurie opened her eyes and looked at me.  I pointed at Mark.  She looked over at him, looked back at me and smiled, then continued to watch him until he woke up and realized he had 'been caught napping".  That she was able to see the humour of the situation was a good indicator to me that she is on the right 'winding road', albeit slow with some construction along the way.   Thank you all for your thoughts and prayers.