Welcome!

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

Monday 15 August 2011

Laurie's Fight for Life becomes a Road to Recovery!


August 5, 2011 (Friday)
Good morning / afternoon / evening everyone -
 
My apologies to those who found my last update to be rather long. One of our friends who emailed thought that my note writing may be therapeutic in nature. I tend to agree with this. I can not say how many thoughts are zigzagging through my mind these days...something between a decillion and a googol I imagine. I am trying to assemble some orderly presentation to my thoughts but this is proving to be a challenge at times. I am typically writing late at night after a long day at the hospital so please excuse the odd bits of diversion from what really is the story of Laurie's Fight for Life and her Road to Recovery. 
 
Over these past two weeks I have been thinking about order and method. My thoughts come back to that doyen of literary private detectives - Hercule Poirot. Laurie and I both like to read and to watch mysteries. We find that the productions from the BBC are very well done. The shows and movies based on Agatha Christie's novels and short stories featuring Poirot are some of our favourites. Poirot was a man who based his work on "order and method". As well, he often had to rest his "little grey cells" by sleeping while others on the case worked all hours of the day and night. In some complex cases his little grey cells were severely agitated - enough so to produce the clue that had eluded him. He was the one to solve the mystery because of his order and method and how we treated his little grey cells.
 
It is interesting that the "order and method" and "little grey cells" are so connected with Laurie's illness. Examples of order and method in the hospital are everywhere you look and behind the closed doors that you can't. Methodology can be observed from everything to the control of parking to the sequence in which patients with quite different problems are handled. How to secure the patients' prescriptions and ensure that the right patient receives the correct drugs and doses? Methodology of course. How are emergency backup systems designed to automatically function in the emergency room? Methodology and a good electrical engineer I would say. The scheduling of human resources must surely be a nightmare for the operations manager. I assume that he or she has freedom to the access the medical supply cabinet for Tylenols and Gaviscon. I don't know how large the staff is but there are day and night shifts, weekends, statutory holidays, employees on umpteen different types of leave and the large volunteer force. Behind all of this HR juggling is some software, based on various proven methodologies, to help in making the staff assignments.
 
And "order"? Sure there are orderlies carrying out tasks that you and I might not appreciate having to do. Sure there are orders given through the hierarchy of a very large institution with people of tremendously different backgrounds of education, culture, language and experience. How can all these people work harmoniously without order? Staff are orderly in their tasks whether they need to change a, er, a bed-pan or track down a doctor who could be in three places at the same. There are strict orders and there are guidelines. These are not to be mixed up if you are a subordinate. Taking a variety of different coloured and shaped pills in a specific order usually is not a going concern. The order in which you eat the food presented at dinner is not important as long as you begin with the dessert. And what about ordering all of those hospital supplies? Surely someone must decide if next month's order for Purell will be 250 or 2,500 cases. How many gross of plastic straws, Nabisco Premium Plus crackers and micro-sized plastic containers of Kraft strawberry jam should be ordered this quarter? Fall short on your best estimates and look out as the patient complaints sound the hallways. Overestimate and you may be eating unsalted crackers and jam for breakfast, lunch and dinner as you look for another job. The anesthetist certainly needs to do their work before the surgeon begins theirs - order is seriously important here. And then of course there is the ordering of a medium double-double with half a dozen non-powered Tim-bits and a crueller to go.
 
Now what about these "little grey cells"? Well, this is where Laurie's journey all began. The brain is an amazing creation and is really constructed of these grey cells which are, by necessity, quite little. Think about it. Your hard drive just crashed due to a random power failure or because of poor quality control at the factory. Unless you do backs-ups like you know you should, you may have lost everything. The bytes on the hard-drive no longer are able to provide the information they once stored. The damage to the brain cells can result in a number of problems including temporary or permanent loss of memory. The primary concern for Laurie was the proximity of the tumor to the area in the brain that relates to speech. You can not back-up your brain cells like that external hard-drive that should be used more often. It is to the credit of the surgical team and those running the instrumentation like CT scanners and MRIs that as little damage as possible was done to Laurie's little grey cells. This approach taken resulted in some of the tumor remaining. Risk assessment would be done before the surgery began and once the brain was exposed. Conservatism is the sensible approach. Let other treatments such as chemotherapy or radiation begin after the tumor has been mostly removed.
 
I keep wondering why this illness struck Laurie in the prime of her life. There was no incidence in her family history of this. If it was not genetics then was it related to lifestyle and if so, what aspect? Perhaps, given the chance, it is a mystery that Poirot could have solved by agitating his little grey cells.
 
August 3, 2011 (Wednesday)
I arrived at 08:25 to see a pretty alert Laurie scanning what was left on her breakfast tray. Eating her food before I arrive is a positive indication that she is having a good beginning to the day. Right after taking her pills her surgeon peeked in and gave her the once over. He felt that she was looking good and that her stay would soon be coming to an end. Then another doctor came in and told me that the pathology report had arrived. My ears perked up and I took up pencil and paper. The tumor that Laurie had is apparently fairly rare. It is called ganglioglioma and is in most cases benign. Wow. What a relief that is. The long-term prognosis is very good especially when the tumor has been completely resected or removed. This should hopefully occur with the follow-up treatments. Good news in the waiting. I asked for a copy of the pathology report but the doctor said he would look into this. You don't need to be Kreskin to know that the report won't be coming soon. The thing that was coming, however, was the move tomorrow to another wing and floor. The talk of the morning so far centered on this topic. The new floor had just been renovated lock-stock-and-barrel; everything and everybody was supposed to move on Thursday.
 
Laurie had a worse headache now even with the good news about her condition. Tylenol 3 helps here. This was one of the more severe headaches she had encountered. Before lunch we did some walking and stair climbing. How serendipitous that her physiotherapist saw her walking down the stairs by herself. Back to the room content she was doing the right things to get better. Lunch was eaten without hesitation and her headache was diminishing. Little set-backs at this point worry me about just how prescient the doctor is about her leaving tomorrow. She is still quite tired but that is almost expected and apparently is alright with the doctors and nurses.
 
After lunch the nurse arrived with things that I had not noticed previously. The reason being is that she was about to remove Laurie's staples with all of things required to do this. Laurie seemed pleased that this time had come. I was not sure whether to stay, leave the room or leave the building. I decided to stay. The procedure requires order and method. There is the putting on of special green gloves that come in a special package. The forehead was cleansed thoroughly as the nurse explained what she would be doing.  The process involves taking a little pair of scissor-like pliers and sliding a tab under each staple and gently lifting straight up. The nurse counted 1-2-3 and then flicked the instrument up lifting the staples out. She works on every other staple across the length of the closing then returns to the beginning. She told Laurie how far along she was and if there might be some discomfort with a particular removal. OK, hold it here. If that was me lying there, I would not only want a local anesthetic but also a general one. On top of that I would want some application of cryogenics done too. She was again the trooper that she has always been. She only flinched a couple of times due to some staples having been partially covered by regenerating issues. We both survived this twenty minutes and the incision appears to be healing very nicely.
 
The vital signs are still pretty good. They do change but I have noticed that she is not always in the same position or the readings are taken at different times. This is especially an issue, I feel, when they take the blood sugar readings. Tonight, for example, this was done just after dinner wherein she had two juices, some fruit and tea with sugar. The blood sugar reading was double the night before but I believe that test was done before dinner. She consumed her dinner without much prodding. She still had a headache for which codeine was given. She seemed to have some headache for most of the day which contributes to the tiredness. Early in the evening she had a friend in for a few minutes. Although groggy, Laurie recognized her and then had a nice conversation. A final run through of the night-time check list and I was off about 20:10. Quite a long-day for the both of us. 
 
On the drive home I thought about the ups and downs that Laurie is experiencing. The difficulty in one aspect on a previous day may have gone but another one has arisen the next day. For instance, headaches and eating alright today which was the opposite of yesterday. I don't know whether this big move will happen tomorrow but if it does I am somewhat nervous about it.
 
August 4, 2011 (Thursday)
I arrived about 08:15 knowing that this was to be move day for all of the patients and all of the equipment. I thought that it could be quite interesting, noisy, confusing, disruptive and unsettling. Well, as it turned out I was pretty well right. I should have also included chaotic and messy in my original thinking. I would think that even a M*A*S*H unit would make a quieter relocation compared to the manoeuvres conducted today.
 
Laurie was quite tired again and had no interest in the boiled egg and brown toast for breakfast. I really did not either. The plastic cutlery barely made it through the toast so I gave up. I went to the kitchen to get some juices as Laurie had not received this on her tray. It had either not been put on or had fallen off someplace. I thought that I could possibly scoop a muffin or other nourishment from the kitchen that she might eat. Well, the kitchen was empty - literally. It was one of the first things to go. The only thing still there was the remnants of a kitchen. Getting back to the room was like entering a moving obstacle course. Beds on the move, with patients and family and friends in tow. If something was not nailed, screwed or glued down then it got moved. The trick in moving here was that vital equipment and supplies had to move in accordance with the patients. You could not move all of the materials first as an unmoved patient may require something. Tactically it had to be well thought out and there were various meetings taking place in the hallways on a regular basis.
 
Laurie had a visit from the speech therapist that in my view was poor timing. Besides the commotion outside, Laurie was tired and had not really eaten. Not a good time to undertake an evaluation. I had a talk with the therapist afterwards for about 15 minutes. Laurie did not complete the test. The therapist is supposed to follow-up but she felt that she did get a good indication of what Laurie's speech issues are. Then a social worker popped in about four nano seconds after the therapist left. Then the Turkish room mate was taken away for an X-ray. This required having half of the nursing staff and some of the movers being involved. Getting a fairly large person with a turtle-like body cast from a bed to a gurney is rather tricky especially if you are concerned about dropping something.
 
Then about ten people came in to the other bed chamber. The doctor was doing a follow-up with this patient and brought all the students along - to listen. And they had ample opportunity to do so. This doctor went on and on. Loud and somewhat repetitive and seemingly unaware of the pace of his speech. The soliloquy must have gone on for 20 minutes. The movers, I think, were wanting to move her but there was no way this could possibly have been done. The whole thing was out of a Marx Brothers film. The class continued well past noon. Of course, Laurie's lunch had been taken to the new floor so it was quite late in arriving to her. I was surprised just how much heat was still in the meal.
 
After her lunch, the hallways were quiet so we took a walk and climbed some steps. Shortly thereafter, it was Laurie's turn to make the move. We had a visitor at that time and he came along as we moved to another wing and a higher floor. We were headed to room 749 and there were only two beds here. Laurie had the nice side by an expanse of windows overlooking the north and the Gatineau Hills. She spotted a distant building where one of our friends lives. This to me is very encouraging as she has excellent eye sight and recall. The rest of the furniture followed and then the other patient arrived. Yes, Laurie's Turkish room mate (and the entourage). What are the odds of that? Well, I guess if I had some more information I could actually calculate this. We turned up the "I hope we can go home" wishing at this point.
 
It was obvious that not everything had been fixed up on the newly renovated seventh floor. Lights had not been connected above Laurie's bed and the bathroom light was not working. I flagged down one of the guys working on things and he came in and did some electrical work. This required pushing Laurie's bed about which was not easy at first since the brake was on. Then things really picked up. I guess that some very loud alert and alarm systems had not been adequately tested yet. It really sounded like we were in an Oberon class British navy submarine preparing to dive. And I kid you not. Lights, camera, action....it was all there. OK - let's take that once again. This testing continued until all the systems were felt to be working or a large fuse blew and the whole thing came to a halt.
 
To alleviate some of the strain of the day we decided to go outside. I found a wheelchair that looked steady enough to take Laurie out to a small garden at the front of the hospital. This she was up for as was the double chocolate ice-chiller she spied as we were passing the Second Cup on the main floor. So, with drink in hand we sat outside for some peace and fresh air. It is quite apparent that it is calmer outside the hospital than it is in. And we were sitting no more than 10 meters from Carling Avenue which is a very busy street complete with bus, ambulance and police traffic. After maybe 20 minutes Laurie was in want of some rest and I was happy to oblige as it was almost +30C.
 
Back to her new digs and to a comfortable bed until the dinner came at 17:00. Not much interest once again and even drinking necessitated my most convincing of arguments. After a light meal and the after eating routine I headed off earlier than usual. The scuttlebutt was that Laurie would likely be going home tomorrow. This meant some further preparations were required at the house. I drew the day and night blinds as she nodded off quite easily. The Turkish group seemed to be talking rather loudly and excitedly - perhaps it was about the economy back home.
 
I prepared what I could for Laurie's comfort back at the house. I had done this once before only to end up eating a lot of fresh fruit and vegetables quite quickly. Looking forward to the possibilities that tomorrow could bring. This includes the hope that Laurie is feeling better than she did today.
 
August 5, 2011 (Friday)
This is the day that we, everyone, has been waiting for. Release, discharge, hospital freedom, home care, whatever you wish to call. It was two weeks ago at 19:00 that Laurie first went to the Kemptville hospital. We left the Civic Hospital about 11:15 today. We walked out. One of us was more sure-footed than the other and somewhat more awake. Lots of paperwork was explained by the nurse including the prescriptions to fill, next appointments and daily routines that we can strive for.
 
When I first arrived at the hospital about 08:05 I had some doubts as to whether Laurie indeed would be departing today. She was pretty sleepy considering that she did not have a sleeping pill last night. Her new room is better as the thunder-snoring lady is way down the hall in another room. I believe that you can still hear her sawing logs on occasion though from Laurie's room. She was not very enthusiastic about breakfast and a lot of coaxing was done to get her to drink. Drinking is really important to maintain good blood pressure and to ensure that all of the plumbing is performing. After breakfast we did a walk including a staircase and talked to a social worker who is working on preparing Laurie for home care. So, as the morning worn on and after some growing trepidation, we got the green light to move out. I took the bags down and came back for Laurie who found the bed and pillows quite inviting again even though she was dressed in her clothes. I was prepared to do the fireman's lift at this point if she was a willing participant. This was not required as she realized that she could really leave now.  We did not say good-bye to the Turkish lady because there were about five people in the chamber.
 
What was supposed to be a quick stop at the drug store turned into a much longer wait. Laurie sat in the front seat with the outside temperature near 30C (yes, the windows were down). I must have been 20 minutes or possibly a little longer. I wasn't reading the new issue of Woodworking Today but waiting for a hiccup with one of the prescriptions. There were four items to pick up. Three had the proper information from the doctor but one was missing the number of pills that was prescribed. Good grief. The pharmacist called the hospital but they apparently they wanted a fax from the pharmacist first. So I asked for enough of these anti-seizure pills to last a couple of days until the issue was properly sorted. I also bought a home BP machine and a digital thermometer. My eyes are so tired and droopy that I don't think that I could see the mercury level reading in the old glass one - assuming that I could even locate it. I was somewhat desponded about the length of time it took but Laurie took it all in good stride.
 
As we left the Kemptville I played the theme song from Local Hero which is called "Going Home". How fitting this was as she seemed content about our return home. Pulling into the driveway it was interesting to watch Laurie's reaction to being home. She stopped and looked around and listened to the birds. But what she really was interested in was getting into bed for a rest. We both slept in the afternoon and had a bit of lunch. Then more rest until dinner. It is very quiet here compared to the environment over the last two weeks. This will be conducive to Laurie's recovery. I will be with her 24/7 rather than 12/7 and not be commuting. There will be some respite time when I can do whatever is required in town. She will have someone here for those times.
 
So, here we are. Home sweet home. Back at the ranch. Our sanctuary. The two weeks away seemed much longer. Physically and mentally and emotionally we are tired, "drained" may be a better word. The journey continues but on a more hopeful path now. The positiveness that has been sent by mail, email and by telepathy to us was been very much appreciated. We thank you for this.
 
Judy Garland said "There's no place like home" after her very interesting journey along the yellow-brick road. I really think I know what this means now.
 
Good night from Oxford Station -
 
Mark
 
P.S. - Looks like I will need to apologize once again........
 
 

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