Ringing the Bell

Monday, September 19, 2011

 

It has been a full week now since the last update on Laurie's health. I am pleased to report that she is maintaining course for her recovery plans. She is now participating in more activities around the house and we venture a little further each day along the road on her morning walks. Her sleeping is going well and her sickness has not returned since her first two days of radiation. A good balance of resting, eating, drinking and exercise continues. She did take time to down load the photos from the BlackBerry to the home computer. I took many pictures of her along her journey that she had never seen before. In fact, she really did not know that I had taken them. Some of the photos are very poignant and I was not sure how she would react. Not to my surprise, she simply went through them and asked the occasional question or two. I was more struck by some of the photos than she was and I was the photographer!

 

The appointments last week were at the end of the afternoon which meant commuting to the hospital was typically slow in both directions. Once at the hospital, the sessions went well. Laurie must be close to being a model patient for the radiation staff. Always pleasant and undemanding and a good listener. She is taking everything in perspective. There are other patients in the waiting room who appear to be suffering more, at least outwardly.  It seems to me that many of patients are there alone and not with any family or friends. This must be difficult for some of them.

 

The bell to signify the last of someone's chemotherapy sessions rang twice last week while we were present. In the first instance, a little boy of perhaps six years of age, head completely devoid of hair and quite red, had finished his treatments. He was a little small for reaching the rope on the bell but his father pulled the cord and the three or four staff there with them all clapped and smiled as we did. He seemed to be in good spirits and I wondered just how rough a start in his life that he has experienced and what his future may be like.   The second ringing was from a woman whom I would estimate to be in her fifties or early sixties. It is difficult to give an age since the treatments may dramatically affect the person's appearance. She rang the bell with vigour and cried and smiled while doing so. The sound of clapping accompanied her joy and I am sure that there is emotional sentiment from those thinking of her and the completion of their own treatments.

 

Last week also saw us visit her neurological surgeon at the Civic Hospital. This is a rudimentary follow-up that we were anxiously waiting for. He is a very genuine doctor who took his time with Laurie. He is very interested in seeing the results of his labour, starting with the healing of the incision on her head. All is well there and he seemed pleased. He conducted a number of physical tests with Laurie and asked her about how she was feeling. Overall, a nice meeting to have had. The next meeting with him will be after Laurie has completed her radiation sessions at which time another MRI will be taken. He will review the baseline images taken just prior to the sessions starting and the images after her six weeks of treatments. It is good to know that there are several doctors who are following Laurie's progress and doing their own assessments.

 

Like many of you we find that weekends are something that you look forward too. Not only do we not have the drive into Ottawa but there seems to be a fall fair or event taking place every weekend. These activities offer variety to our weekly routine and with the nice weather here in Eastern Ontario we have some choice. Last weekend we went to a nearby apple orchard and bought some nice fresh fruit. We did not pick ourselves this year but many of those there were doing just that. We did some walking by the Rideau waterway and St. Lawrence River where Laurie was identifying plants and birds. We met a mink at one point that seemed as curious about us as we were of it. It seems to me that there are many events taking place in the small towns and villages that the city folk travel too with anticipation. I am not sure how many of us country bumpkins are heading into the city on the weekend. I believe that there is a special appeal to being in rural Ontario in September, especially with sunny skies and comfortable temperatures.

 

Treatment number 12 was today along with a consultation with her radiation oncologist.  Monday is his open clinic from 13:30 to 15:30 when patients can see him. I am not sure where the onus lies on prearranging the topics of discussion. The wait was quite long, well over one hour in fact. He came into the consultation room with his usual vigour and confidence. He seems to have an overabundance of patients which means that his time is carefully rationed. As Laurie appears to be doing quite well, he does not spend more than a few minutes with us. We think that he must be devoting his time to those patients where things are not working out as well. This is quite understandable and we hope that all of his future Monday sessions with us will be short ones.

 

Waiting in the hospital is something that you must adapt to. It is amazing to me how many National Geographic magazines from the mid 1980s to the late 1990s are there in excellent condition. We are typically careful about what we handle in the hospital and take precautions that others may feel are unnecessary. However, with Laurie's decreased immune system she must be vigilant in minimizing her risk to catching something.  Some people seem to wait with impatience and others simply fall asleep. I tend not to be able to read as Laurie usually does. My mind wanders. I look at the other patients and the doctors and hospital staff and think about different things. I know that there are people there who are just beginning their journey and the apprehension is there to show this. For others, it appears that they have just finished work at the office and they stopped in to get their usual treatment before stopping at Swiss Chalet for a take-out. Still, for them, there is a story that lies in their recent past. I seem to be the only person who is taking notes, at least those of the written kind. My small binder is quite full now and yet I am adding paper weekly. Not just my daily updates but notes relating to upcoming appointments, prescription renewals and the names of new support staff that Laurie can call upon if needed.

 

As mentioned, we had a long wait between Laurie's 12th radiation session and the meeting with her radiation oncologist. My mind wandered again back to grade school and to poor Harry. You see, after Harry's regrettable performance relating to his essay on summer fun, he landed himself in more difficulty with Mr. Connors. This time, Harry had to write a 500 word essay on "The air inside a ping-pong ball". It amazes me that I can still remember this sort of thing and I wonder if Harry does to. The essay itself was not presented to the class as his first one was. So, I can not report now what Harry was able to write on such a topic. This is what I was wondering about during our lengthy wait having gone over my mental assessments of the waiting room persons and activities. It is strange that the subject would even be imagined. What could someone, especially in grade seven, write on this? I put my mind on to the subject and it is not an easy one to deal with. I could not even reasonably put my first words together. I know that I would have received an F- from Mr. Connors for my lack of original thinking.

 

This week's appointments are quite diverse for timing. We have two days where we will be part of the rush hour crowd. Three of the appointments are at new times and it will be interesting to see the hospital at those times and what may be different than during our usual hours. I am sure that some new faces will be there in the radiation waiting rooms. Perhaps new radiation technicians will be there as well. There are always two of these people taking care of Laurie and they always seem to be congenial and quite young. The latter feeling is probably simply due to my age. I know most of them by first name basis even if they are in the hallway somewhere outside of the radiation area.  Laurie will be taking her fifteenth session this Thursday (September 22nd). This date will be a half-way milestone and one that I am sure she will be most proud of. She does not show much emotion throughout her sessions as she has accepted that these are integral to her recovery. The only time that she has really shed a tear or two is when she is playing a song on her guitar. I think that doing both of these things are good for her.

 

I need to think of something special to do to mark her milestone achievement. This is a more practical subject to consider compared to meeting Harry's challenge and I can put my mind to it over the next few days.  I know that there will be no deductions for brevity, poor grammar or spelling. Whatever this something special is I hope that she will be as pleased with it as I am in her achievement. 

 

 

Passages of Time, this year and last

"Time" is a word that most of us cherish. It is used in a variety of ways but perhaps none more meaningful in context when one considers recovery time. Many usages of the word "time" refer to the moment or of an instance. I think that we are essentially expressing time in this sort of dimension now. It was seven weeks ago today that Laurie had her operation. Think about what you have done over those seven weeks. For us, the variation on what we do is quite minimal. This is frustrating but we realize that progress is taking place in the proper direction; however slow it may be.  Being at home with Laurie, I thought that I would have time to do all sorts of things - including the issuance of more timely updates. However, the day is quite fractionalized and I seem to have lots of little bits of time to do specific things. Finding more substantial periods of time to engage in non essential tasks, like writing for instance, are difficult to find. For someone who likes to keep the cars clean both inside and out, I have failed to vacuum or wash them since the end of June. There is just no time for this sort of activity.

 

A decade ago, this date was a moment in time that most people around the world will recall. Canadians in eastern Canada were particularly affected and likely recall the events of September 11th, 2001 with more feeling and emotion than others may do. I can recall exactly what I was doing on that fateful morning when the seemingly unbelievable news traveled through the office. It was certainly a time of apprehension and anxiety for us living north of the 49th parallel and a nightmarish time for those living in New York, New York Washington D.C. and around Shanksville Pennsylvania. Time is supposed to heal all wounds but something tells me that the survivors and the families of the victims of 9/11 will forever be dealing with the tragedies that took place.

 

For Laurie and I, we are primarily thinking of the week ahead. We try and remember the successes of the previous week while writing our upcoming activities. In order to help us manage time and tasks we have a small white board and different coloured markers. Laurie is the scribe for this. I have kept and continue to keep notes for each day since July 22nd. I am now at page 99. Typically, Laurie is a note-taker. I was reminded of this when we were in the midst of packing for our move in August. Field books for every work related trip taken and for every endeavour related to bird outings and breeding atlases, bio-blitzes, recreational walks and cycling excursions, amphibian counts and the recording of the bird specifies and critters that visit our bird feeder each year. We both take a clean diary with us on our holidays and this is the only time that I really take notes. This is something that I have always seemingly done on holidays as far back as I can recall. What is quite surprising is that I actually have all of the summaries in one place. Although we write our diaries independently, there is a fair amount of overlap, except when it comes to botanical observations of course. You may find that there is a treatise on the local craft beer in my diary but then see several thoughts on whether a plant that Laurie found that day is introduced or native in her book. They are fun to reread but seldom did there seem to be any time to do this before.

 

Each morning now, Laurie is reading our trip diaries from our trip to Scotland in 2010. Not the whole diary mind you but just the notes that correspond to the current month and day but one year ago. So, this morning after a tasty breakfast she read aloud the bits of history, road travel, food and drink, natural history and the degree of manner of our B and B hostess for September 11, 2010. It does not take a long time to read through the notes unless the penmanship is a little off or the notes become decreasing more illegible as they extend to the bottom of a page and a fresh one is desired for the following day.  I have taken my diary notes for this day (Sept. 11, 2010) and entered them at the bottom of the more current events relating to Laurie's progress and well-being. You can certainly tell how much a life can change in the course of a year looking at the notes from then and now. We both feel that one day we will be looking around to buy new diaries for a trip to a destination that neither of us has even really contemplated at this time.

 

The last status covered up to September 4th.  Generally, and above all, Laurie is dealing with her radiation and chemotherapy sessions very well. Over the past week, the scheduling was such that we needed to be at the radiation clinic for 16:40 or 17:00 each day except for the holiday Monday. This scheduling allows Laurie to spend most of the day doing what she pleases, including sleeping in a little.  The actual radiation activity only takes three minutes; however the round-trip is taking about three hours. This is still time well spent no matter what possible view you take on the situation.  So far she is experiencing very little of the radiation and the chemotherapy side effects (I have just knocked on the desk here). The initial sessions were very difficult but since Monday, September 4th, she has not been physical ill. We still minimize the risk of her becoming so and are vigilant in terms of dealing with the possibility should she become so.  She has not suffered redness or acute swelling. Her hair is seemingly growing with speed as opposed to the opposite. Her level of energy is OK all things considered and her spirit and attitude are positive.

 

Laurie's memory is improving but there is still ground to cover. For instance, the game of twenty questions presents quite a few challenges. This game involves different levels of cognitive thinking and memory and is one of the more difficult exercises that we are now doing. Her vocabulary is coming along in three languages - English, French and Latin. Her speech therapist is not coming the week of September 12th but will come over the following week. She is reading a lot. We unboxed some more cartons and pulled out some reading material for her. She seems to like reading but has some problems in recalling the names of the books that she recently read. I sometimes wonder if she is absorbing the stories or simply reading the words. We did play some cribbage and she did very well in assessing her cards, making a strategy and taking her points. I was very impressed with this task which we do not treat as such.

 

On tap for this week are the five scheduled radiation appointments (numbers seven through eleven). Monday the 12th we see a cancer out patient social worker. After this we will visit her radiation oncologist. This latter meeting is something that we will do every Monday before her radiation session. Later in the week we meet her neuro surgeon at another hospital. This meeting was to be held last week but even surgeons need summer holidays. We are not sure what will be discussed but he did require that CT scan that Laurie had about ten days ago. We feel that it will be an assessment of her progress as he sees it. Laurie is still very unclear about what had happened and can not really remember events that took place with her initial trip to the hospital and her release some two weeks later. In the overall scheme of things this is not very important seeing as I have many pages of notes. She has not read the blog since she does not yet realize that there is one. I am hoping that some day she will read what you have been reading and what she has been living through.  She appears optimistic and more understanding of what is taking place this week. She is now able to sort out her various pills and dosages for both morning and evening. She is quite interested in reading the fact sheets about her prescriptions and asks me time and time again to go over each prescription's purpose and dosage. Her balance is quite strong and she continues to stretch and wishes to take short walks. She does still carry her stick which is something that I have seen her rely on at times. Finally, she wishes to return to the greenhouse and see how her grasses are doing.

 

We did two walks over the past weekend. The first was along the St. Lawrence River at Prescott, Ontario. We took our time and enjoyed the weather and quiet activities surrounding us. It is not often that you do not see a large ship plying the waters but Saturday was one such day. On Sunday we returned to the river but farther east - to the Morrisburg area. We strolled along the path next to the river which had significantly more human and bird activity taking place. Again no lake freighters were seen. There is something calming about being next to the river and we just took our time to take in the sun and the smells. Laurie took her binoculars and was able to identify birds, butterflies and some plants. All this is very good to see and I need to keep reminding myself that it was only seven weeks ago that she was being operated on. 

 

As anticipated, the summary of Laurie's road to recovery is becoming shorter in length as the routine of the days becomes quite apparent. I would like to thank Marian in Nova Scotia for continuing to post Laurie's progress and for dealing with the photos that I have found and sent along. Each time that I see a photo that has been stored in a computer file that I have not seen for years brings back the memories of the wonderful journeys that we have taken together.

 

Time to go. Below is the diary entry from my journal. How much life can suddenly take a turn is certainly evident from what we did then.

 

September 11, 2010 (Glencoe, Scotland).

 

Up at 07:15 and into the shower. It was also a shower outside - in fact pouring! Wondered if the hike to the Lost Valley would leave at 10:00? Had a nice breakfast. There was a couple from Italy and an older woman arriving after 08:00. A nice meal but not the full monty. It continued to rain as we left the B & B heading to the Glencoe Visitor's Centre. Arrived about 09:40 and checked in for the trip. There were five women also doing the walk - four from Germany I believe and one older lady from somewhere in the UK. The two guides were Johnny and Matt. Started off by completely encasing ourselves in anything waterproof. The trip was to go for about four hours. Lots of rain and slippery walking to be sure.

 

There were a few interpretation stops including one that spoke of a hidden person counter. It worked on the pressure of someone walking over a sensor a little bit buried. Took pictures of the area and of the group - constantly in rain. People seemed pleased just to be out and getting exercise (walking, climbing, swimming). Tough going in places - certainly more challenging than say Ben Nevis was back in 1996. Once having entered the Lost Valley we saw a herd of deer, maybe 35 to 40 in all. Had the sandwiches we bought in the village earlier. Passed around the cookies we brought but only the two guides took advantage.

 

The rain had ceased by now but was still ever present. The walk back took a different route most of the way. With all of the rain, the creeks were turned into rivers. We needed to ford one and this is where I got wet. The stepping stones were basically under water and deep enough that it topped my boots, ergo, two very wet feet. Laurie faired a little better than I did but some others got just as wet. Am wondering if these boots will ever dry in the future, at least at the B & B.

 

Having successfully managed the Hidden Valley (Lost Valley in the Three Sisters) walk, we got back into the Park Services Land Rover for the drive back to the Visitor's Centre. Said our good-byes and got the hiking ideas from Matt. Back at the B & B and Maureen's offer of a pot of tea was immediately taken up. She also carried away my boots to some secret drying chamber. Having then converted our room into a drying room and examining everything that got wet, including passports, we had a wee lie of perhaps 70 to 80 minutes. It was raining lightly whenever I opened an eye. Egads!  Will it ever stop raining? About 16:30 we headed out to see a sale of free-trade Tibetan things where Laurie bought a nice hat. The girl working the traveling exhibit and sale was from the Czech Republic. Carried on up the road to the village hiking trails where there are three of them all joined up. We walked the Woodland Trail which was 1.5 miles long and very well maintained and sign-posted. Some huge trees, lots of moss and ferns, etc - just what one would expect being in Glencoe. Began to rain again and the umbrella was used to minimize the shoes getting wet. Near the end and the car park we bumped into Ben (the B & B dog) and Ken along with another dog and Ken's friend. After a short chap about the weather and walking, we headed to the B & B via the village store where I bought single cans of beer. Returning wet for the second time in one day we hung up what we could and decided that going to the Clachaig Hotel for dinner was in order.

 

It is about two miles from the village so we drove the single lane road encountering a few cars and people. The Clachaig was quite busy and I lucked into parking in the last real space - almost hitting a car whose driver was attempting to weasel by me. Inside, there were about ten real ales - mostly from Houston Brewing. I settled on a beer from Williams that was excellent. Laurie had a salmon with spuds and veggies and I had a chicken done Cajun style with chips and veggies. Very good place and very busy - even at 20:45 when we headed over to the bar area.

 

The bar was packed with excitement - at least lots of loud talking and laughing. Got a real ale (Warlock Stout) and found a spot before the substitute three person band came on. Actually pretty good all things considered. Several dogs in various states of anxiety were about including some very docile small grey hounds (welties?). We enjoyed the music and atmosphere until 22:00 the departed for the B & B. Maureen welcomed us back and locked up as we must have been the last of the guests to call it a night.

Good things come to those who Ask

Plan B. What a ubiquitous thing that this has become to many of us. It can mean anything from selecting an alternate route to work should the traffic look like you are driving in Manila to what type of Ben and Jerry's ice cream to buy given that your favourite was also many other shoppers' fav. too.

 

Our lives here have many of these Plan Bs. In some cases, we know enough now to have a firm one in mind and even, dare say, a Plan C just in case. These plans have come in quite handy. I will relate some of these in the update below.

 

Given that there is a high level of uniformity now in Laurie's situation, I will dispense with the daily updates. A summary of the events having taken place since the last report will be given - both the highs and the lows of things. There will undoubtedly be some natural chronology required so that the events make more sense in their relationships.

 

Some of the readers had experienced the recent effects of hurricane Irene. Those more eastward of here were sure to have encountered some consequence. We had some very minor edge-of-the-storm action and nothing severe occurred.  I was thinking though that storms like hurricanes, and more particularly, tornados can be an allegory for Laurie's recent experiences. Having come home from the hospital on August 5th after her initial battle with her brain tumour, she has been, generally, getting quite better in all aspects - mentally, physically and physiologically. However, as she entered into the second set of challenges - the radiation and the chemotherapy, she has regressed at times. It was like the tornado hit her hard in July and we entered into the eye and things were looking pretty good. Then the tail end of the storm came upon us and things became quite difficult for her.

 

Sometimes no matter how much one plans, the storm is just so overwhelming that you find yourselves helpless and it does not matter how many plans that you may have though of. Fortunately, we have not reached this point although at times it seemed that we were darn close to that.

 

The last update was sent on Friday, August 26.   Since then we have encountered three delays in Laurie's start date for her radiation therapy. The original plan, Plan A, was that Laurie was to have her first radiation session on August 30th. As the day arrived and we were preparing for this major event, the radiation oncologist's nurse called to say that the treatment would be cancelled for that day. The rescheduled appointment was for August 31st. The first postponement was reasonably explained. On Monday, August 28th, she had a CT scan and also an MRI. Upon review of the images, the oncologist decided to change the instrument that Laurie would be treated with. So, this meant that they had to find a spot in the queue for her on this other instrument. Makes perfect sense and there would be benefits for her on this other instrument.

 

So, August 31st was to be the new launch date. Then, we got the word; "Houston, we have a problem". I could sort of sense this when the telephone rang and we were actually on the road to the 17:00 appointment. Apparently, the equipment broke down or in more technical terminology, there was a systems malfunction. Good thing that she was not being radiated on when the system malfunctioned I thought. So, we made a smooth exit off of the highway into the town of Kemptville which is where we rely on the pharmacists and grocers. Being somewhat disappointed, we took a Plan B for our new found time and went to see about some medication that was awaiting us at the drug store.

 

The prescription in question was related to Laurie's regular medication that she took before her illness struck. I saw that she had only about two weeks left of her pills and decided to reorder early. Apparently, this was a wise thing to do. The issue was that the pills were on back order for about six months. This originally caused us some consternation but the pharmacist reassured us that she would contact Laurie's GP about a suitable replacement. After several days of waiting, I called the drug store to see where we stood. There was still no decision made because the GP had not gotten back to the pharmacist. So, I told the pharmacist that I would call the doctor and get things moving. After leaving two messages at her office I felt that getting somewhere will this medication replacement may not be so simple. It looked like an Abbott and Costello routine at this point.

 

After over one week of inactivity, in my eyes at least, the pharmacist called and said the replacement drug was ready. This brings me back to the swift exit off of the highway on August 31st. I will not pick up a new medication and leave the store without speaking with the pharmacist as I did on this occasion. The replacement drug were little white pills that were all ready to go. We learned in a question and answer session that the active ingredient was suspended in some type of peanut based agent. Well, seeing that Laurie is highly allergic to peanuts then a problem was at hand. Plan B had failed and could have been much worse. If we did not learn of the peanut presence and Laurie had taken a pill then she would have been in anaphylactic shock and a call to 911 would have been made.

 

So, making our concerns of what we felt to be inadequate record keeping to the pharmacist, we left with nothing. Noting that there she had only about four or five days worth of her original pills, I went to Plan C. This was because the pharmacist told us that there was nothing else that she could provide. So, I called a drug store in Ogdensburg, New York and enquired as to the availability of her original pills. Well, they had plenty of them. Now Ogdensburg is only about a 30 minute drive from here if you obey the speed limits. The only stipulation to me getting the pills was that I needed a note from Laurie's GP explaining the shortage of the pills in Ontario (along with the prescription of course). So, this was my Plan C. However, the doctor's letter was integral to the plan and I was not able to contact her and messages left were not returned.

 

I explained to Laurie's case manager the situation we were in and my Plan C. She was agreeable to hunting down the doctor and getting this letter. In fact, the case manager would drive it down to the house. Brilliant. Then, the pharmacist called. She had talked with the GP and a substitute medication was identified and in fact waiting for us at the pharmacy. Good grief. With only two days' worth of pills left, the timing was rather tight. So, back up to the drug store and the new drugs were picked up after an interrogation like talk with the pharmacist.

 

The rescheduled radiation and chemotherapy start date was September 1, 2011 (just to clarify the actual year) at 17:20. So, getting prepared in all the various ways, we headed up to the hospital expecting the telephone to ring - likely just as I entered through the parking gate. No such call came and on we went. Before the first radiation session takes place, an appointment with a nurse is scheduled. Presumably, this is to go over all of the ins and outs of the treatment which would include some discussion on specific topics - usually the side effects. Our nurse turned out to be a five star person. She not only gave us a nice summary of the basics, she organized future appointments with a dietician, a physical therapist, and a cancer social worker. But that is not all. She arranged for an immediate blood test that Laurie's GP wanted. Then she handled the issue of my calls to the surgeon's office for a refill on Laurie's drugs not been returned. She popped out for a few minutes then came back and said that Laurie's pills would be at the hospital pharmacy counter in twenty minutes. If I had a self adhesive gold star then I would have placed it on her forehead. Laurie and I were most impressed especially since the radiation technologist took Laurie away about twenty seconds after our meeting with the nurse wound up. 

 

Off to the first radiation treatment. We were quite pleased. As it was the first visit for radiation treatment, we were instructed on a number of important aspects. This included using your bar coded identification card to let the staff know that you had arrived. If you wanted to see a nurse or a doctor then the methods to do this are given. Your weekly schedule is given on each Thursday visit which lays out the next five or six appointments. If you have a conflict with an appointment time then the instructions for dealing with this were presented. The arrangement to see the oncologist on a weekly basis was also reviewed. Good thing that I had lots of ink in my pen and paper to spare. Finally, they tell you that you can have all the candies that you wish!

 

The radiation only took three minutes. The added time is due to the preparation part - the fitting of the mask and the testing bit to ensure that everything would go according to Plan A.  So, Laurie came back to waiting room just as the BBC sport highlights were about to begin. We left there pleased that it was one session down and now 29 more to go.  I would be responsible for the chemotherapy part as I had the $10,000 worth of drugs secretly tucked away at the house and had the instructions memorized.

 

Thursday, September 1st was a night to remember. At about 01:00 the side effects began. Poor Laurie. She was sick in the mixing bowl that was placed right beside the bed. This continued almost hourly for the rest of the night. Although she took an anti-nausea pill before the chemotherapy pills, the effects of having started radiation and chemotherapy on the same day proved to be most devastating on her system. So, the night was long and painful. She understood why this was happening to her. All I could do was give another anti-nausea pill every four hours and hope for the best. Morning came and it was as if neither of us really slept at all. She was experiencing what the literature and the hospital staff had indicated might happen after the treatments. To me, there is no "treat" in these treatments.

 

Friday saw her back at the General for her second session. The time was for 17:20 and judging by all of the optimal parking spots available, quite quiet at the hospital. It was Friday prior to the long weekend.  There is a hospital protocol that one sees a nurse after their first radiation treatment and before the second. As arranged, the nurse spoke with us to get a sense of how Laurie managed over the last 24 or so hours. Having related the experiences, the nurse indicated that this seemed somewhat normal but she would like to speak to a doctor concerning a change to one of Laurie's prescription dosages. This nurse also would have received a gold star. Running five minutes ahead of time the technician took Laurie to the radiation instrument. The hospital was eerily quiet. I caught up a little on my note taking and savoured a watermelon flavoured bon bon as Laurie walked back by herself to the waiting room. A little hug and smile and she and I wondered what to do next. You see, she also had a CT scan scheduled for 21:00 in the same hospital. Since the time was only about 17:35 we pondered what our plan would be.

 

As we were contemplating what seemed to be just a few boring options of what to do I caught wind of a conversation from the only other people around. It was a man and his kids and a radiation nurse. He had just completed his last session in an eight week period and the nurse was reviewing some of the possible actions in his future. This man knew that there was a bell in the adjacent hallway that a person who completes their radiation program can ring. I heard this once on an earlier visit and response to the ringing was clapping from those in the waiting room and the staff. However, this being the eerily quiet night it was he went along the vacant corridor and rang the bell. The sound of the bell echoed down the hallways without a response from anyone. We felt that we should have clapped from where we were but did not. This we both regret. I wanted to say congratulations to him as he walked by us but I thought that this would have demonstrated that we had big ears. We thought of him afterwards and all the things that he might have gone through in order to ring that bell. We wish him well in his journey.

 

Now, I had packed a small cooler bag with some soft nourishment and drinks for Laurie to have between the two appointments. I had left this in the car thinking that a walk would help to fill the two and a half hours of waiting time. Then I thought of Plan B. Why not go and find the Module X on the second floor and find out exactly where the 21:00 appointment will be.

 

Now, I believe that M.C. Escher was a member of the architectural committee that designed the General Hospital. I had in fact been sent a floor plan of how to find Module X.  This map is not to be handled as junk mail. With the map and after a couple of navigational failures, we did arrive in the correct location. A very pleasant person was sitting behind the glow of a computer monitor as we approached. We wanted to know if there was a chance that Laurie's 21:00 could be moved up. The waiting room only had one person and she was on a gurney sound asleep. I explained that Laurie had just had her radiation session and now she was available for the scan. It never hurts to ask so don't be shy about this. After an immediate and short telephone call, we were told to proceed down the hall and take the last door on the right to the CT scan waiting room. It seemed that either there had been about 20 CT scan cancellations or the appointment times are somewhat randomly distribution. What a stroke of luck though. I decided right then to stop on the way home a buy a 6/49 ticket (which being a statistician I did not actually do.) 

 

Expecting more than an empty CT scan waiting room I was found to be wrong. Just the technician was there and asked Laurie to go straight on in - no change into a hospital gown was even needed. A few minutes later Laurie was done. I had virtually no time to look at any of the articles in June 2009 issue of Field and Stream. As we walked along the corridor we talked about the value of having a Plan B. The woman who made the original call for us was on the telephone as we left but she raised a thumb and smiled at our success.

 

So we were on our way back home a couple of hours ahead and thinking about how good things come to those who ask. We also thought about the chap who had completed his treatments and celebrated in relative silence.

 

The illness experienced during the early morning on Friday, Sept. 2nd was reduced by about half during the wee hours of Saturday morning. The prompt administration of the anti-nausea pill after four hours seemed to help a little. Still, the compound effects of radiation and chemotherapy was very stressing to the body. The reason that both treatments began at the same time was explained by one of the gold star nurses. The chemotherapy apparently makes the radiation more effective and thus is prescribed at the same time and not before radiation starts. It was felt that given Laurie's tough first night that the side effects from the radiation were more severe than those caused by the chemotherapy.

 

Meal plans have changed a little now. The traditional three meals a day are still there but the volume of the servings are a little less. A couple of times during the day, some small snacks are taken. This is now likely to be the approach over the next six weeks. I am fine with this since I can now have five meals a day rather than three. Plenty of fluids, focusing mostly on just water, is also an essential part of the treatment period. Rest and light exercise have been, and will continue to be, important aspects of recovery.

 

The weekend was a little better in terms of her sleeping and the level of her treatment side effects. Saturday night was actually a good night with no sickness being experienced. In part, this may have been due to me giving Laurie an anti-nausea pill at midnight and at 04:00. The Plan A is to get up for a few minutes to give the drugs as early as possible according to the prescription and then hope for the best. The Plan B is to try and deal with the sickness as best we can with the guidance provided. Plan C would be to call the telephone number at the radiation area and speak with an oncologist. There is at least one such doctor available 24/7 to offer advice on difficult situations. One result could be that a nurse comes down to the house and administers an intravenous drug.

 

Some friends came over on Sunday morning (Sept. 4th) and we had a nice time. After a while Laurie did show some tiredness and we said goodbye and thanks to our friends who not only brought their friendship but lots of nice home made goodies as well.  The day ended with a episode of Inspector Morse. This will be our Sunday evening tradition as it is good to have such things. Watching these shows I can not help but think of John Thaw who passed away from cancer in 2002 and the ordeals that he faced. I read a book last year written by his wife, Sheila Hancock about their life together. I do not usually read biographies but I did quite enjoy this one. Worth the read if you enjoy British cinema. I will note that to get a copy of the book may require you having several different plans as it seems to be quite scarce.

 

Egg farms, carpet cleaning and appointments

 

Good morning / afternoon / evening -

Laurie's father Arthur was the head administrator in several small Ontario town hospitals. His last tour of duty was performed at the Stevenson Memorial Hospital in Alliston, a small town of maybe 10,000 people north west of Toronto. Not having obtained much experience with hospital settings in the past I could not fully appreciate what his responsibilities might have entailed. He always seemed to be a man who left his job at the office but that he was very good at it when there. He was very well respected by those who knew and worked with him. Not by chance, I daresay, Laurie worked in the kitchen at the hospital. I believe that she was responsible for such tasks as getting meal trays ready for delivery and for dealing with the returned ones (and all of the food that was probably tucked under the various containers and empty packaging). This put some spending money in her pocket. With it she liked to go to the small coffee shop on the main street where she enjoyed the comforts of small town home cooking and milk shakes.

If Arthur had been the administrator in a hospital such as the Ottawa Civic or General, his title might have been aptly presented as "mayor". These institutions are really like small towns in themselves. From my very limited recent experiences in walking the halls and keeping my ears open, I did not realize that there is much more than doctors, nurses and of course, patients, under the roof. There are book stores and libraries, shops of all kinds, banks, wig fitters, coffee places, chapels, restaurants, dental offices and even hotels for family visiting from out of town. There is a substantial infrastructure in place to handle power outages, the simultaneous arrival of multiple emergency vehicles, a helicopter port, environment maintenance, a street network and parking lots and garages. The computer and communication systems must be impressively large to handle all the information flows.  Much of these services are deployed out of site but you know they are there. What you do see, and quite frequently, are the security staff. I wondered about this.

If you are in the morning coffee queue, you may see two or three security persons striding purposely down the corridor.  Very seldom do they walk alone. They appear to be wearing flak jackets or at least Kevlar vests, not quite like those worn by the US navy seals but impressive none-the-less. The word "Security" is prominent across the back of their usually quite beefy shoulders. So where are they going and for what reason? I began to think that yes, some activities in this large place would occasionally necessitate the services of these folks. But what exactly? Perhaps some tired soul had their credit card eaten by the parking machine and they were administering more than just words to it. Perhaps a patient had gone missing from G Sector, Floor 2, Tower B. Maybe a visitor had mistakenly entered the building thinking that it was a drug store and was looking for those little white pills. Could someone actually be taking one of the 25,000 hospital gowns home? Did someone get short changed in the cafeteria and was sounding a loud complaint? Was someone trying to unscrew the 6" by 4" black and white television over one of the sleeping patients' beds? Could there be a speed limit on wheel chair conveyance and someone was in excess of this? Had there been a collision of two of these and a hit-and-wheel off was in progress?

I can not report that I saw anything more than rounds being made or the security staff walking to one of the shops or food services. I never saw handcuffs or assault weapons being demonstrated or anyone dressed in camouflage. No secretive talking into a hidden microphone was observed. I guess that having these people there is a necessity in a hospital. Like the elaborate fire fighting systems there, it is good to know that if the time comes then there is something in place to deal with the situation. I guess that if Arthur was still with us he could have set me straight on the types of challenges that hospital security face.

August 20, 2011 (Saturday)

The day began with me heading over to the nearby egg farm for some truly fresh breakfast items. The farm is only a few minutes away and Laurie elected to stay and read on the sofa. There are several "biohazard beware" signs as you enter the farm property. These signs are a bureaucratic requirement it seems as the owner indicated to me some time ago to just ignore them. What one must be aware of though is Kaiser. This is a farm dog in the truest sense. He makes Cujo look like Scamp. He sees you coming far before you know that he is around. At first sight you feel that maybe you would rather skip the eggs and have a bowl of cereal instead. I believe that even Caesar Milan might hop back on the plane to California rather than deal with Kaiser. Well, this is where experience becomes important. Kaiser approaches the car with stealth. He usually makes his presence known as you open the door or are about a meter or two away.

Then the tail begins to wag and the tongue begins to lick the skin off of your hand. Once you say his name a few times and remark on what a good boy he is then he becomes your best friend. The time to get the eggs becomes longer as he escorts you to the door of the barn and waits for you. Paying personal attention to him is a must. I keep reminding myself to bring a dog treat on the next visit. So, having got the main ingredient for breakfast it was back to the house to do the cooking.

The rest of the day was not as exciting. It was simply a quiet day of resting, eating, drinking and some light exercise. I did some work with the boxes that I returned from the storage locker while Laurie spent the afternoon resting.

August 21, 2011 (Sunday)

We were awaken at 00:35, 01:35 and 02:30 by mother nature's mighty show of thunder, lightning and at times, heavy rain and wind. We live in a forest with 100 year old maple trees with branches hanging very close to the house. Storms are not our most settling of moments being where we are. After a hearty breakfast, our day did not start very well. The issue was that the printer had run out of the yellow and black ink. Rather than printing everything in fuschia, I asked Laurie if she remembered how to change the ink containers. Well, she was right on it. The yellow was changed first without a hitch. The black container was a double size and I opened it like I did the yellow. However, the ink began to flow out of the container. It first hit Laurie's sock and then over various parts of my hands and thence onto the grey carpet. I have no idea what I did differently but I was not very pleased.

As I dashed for a splatter guard and tossed the leaking container into the garage I knew that an industrial carpet cleaner agent would likely be required. Laurie's sock was a write off. The carpet is a little better after the application of carpet cleaner and some vigorous rubbing and blotting. I still need to find something to try and remove the remaining blob - thinking that something like soda water might be a cheap solution.

Friends arrived about 11:00. They came over from the Belleville area which is about a 2 hour and 15 minute drive. We had arranged to meet and they brought some seasonal green beans, his famous spaghetti sauce and his very tasty chilli. He and I then made a bit of a road trip while his wife and Laurie got along just fine. It was a fine day at the house but the region did have some serious localized rain showers. About 16:00 they headed home and we sat down and enjoyed an easy to prepare meal.

Tomorrow was our early appointment at the Civic Hospital for Laurie's MRI so we packed it in early. We would need to be up and about by 05:45 to comfortably make it for the 08:00 scanning. The rain did reach the house in the late afternoon and continued throughout the night. Wishing that the MRI goes well and that Laurie's tumour is not starting to become enlarged.

August 22, 2011 (Monday)

This was to be the busy day of the week. First the MRI at 08:00. Then a short drive across to the green house to check on the grasses. At 13:00 we had to be at the General Hospital for a CT scan and the making of her head gear for her radiation treatment. The MRI (Magnetic Resonance Imaging) and CT (Computerized Tomotherapy) scans were needed by the radiation oncologist in order to prepare the radiation plan. 

We did get up early and Laurie was sufficiently engaged in the day ahead. She was aware of the things on the list and looking forward to getting them done. The MRI is an instrument that she is not fond of. This is partially due to the length of time that she must remain absolutely still (about 20 minutes) and also the noise that it makes. It is a very large machine and looks to be out of some episode of the first Star Trek series. She changes into the hospital gown as well even though the scan is only for the brain region.

After the MRI I invited her to the hospital cafeteria for breakfast. The idea of eating before going to Ottawa was not appealing so she only had some yogurt with her pills. I think that the cafeteria meals are pretty decent in terms of quality, quantity and price. They exceed the meals that patients receive. She had a breakfast English muffin with bacon and cheese which she thoroughly enjoyed along with some orange juice. Tea rather than coffee is still the current hot beverage of choice.

We then drove the short distance to the green house. She was very pleased to see her grasses doing so well. Many already needed another trimming. Some of these grasses are growing as quickly as the hair on her head. I came prepared with the scissors and began the work. She was engaged in relabelling some of the plastic identification tags. It was amazing that based on a four digit number she could recall the name of the grass, where it was collected and when. This makes for a successful day in my view. We spent just over one hour tidying everything up and chatting a little with one of the people who works there.

We then drove east to the General Hospital. I found what must be the optimal parking spot as it was generously wide and very close to the entrance. As we had a little time on our hands (remember how I like to be early), we had a little food at the Timmy's. We found the radiation south department and received the instructions for her CT work.  We waited in comfortably appointed surroundings for her to be called. I went with Laurie and the technician to the CT room for a run down on the next steps. It was quite an interesting discussion. The technician then brought out the mould for Laurie's mask and explained the procedure slowly and thoroughly. I even took pictures of the event. I had to then leave the room as the actual CT scan would be done with Laurie's new mask in place.

It was only a matter of a few minutes before she appeared with the technician in the waiting room. Similar to the MRI earlier, she had to wear a hospital gown for this scan. So, the day's events had ended and basically on schedule. Hurray! Back in the car and heading home. We took the scenic way and stopped in Kemptville for a few items. A well needed rest until supper time. While Laurie slept I reviewed all of the hospital reports that I received in the mail today. They are very interesting and I learned much more about the operation and some of the future steps. These reports are very medical in nature. It is good to see that her GP has indeed received this information.

We ended this busy day with some recall exercises. She is getting much better now with these and I am very pleased with the progress. I am sure that her speech therapist will see the gains when she visits tomorrow.

August 23, 2011 (Tuesday)

Up again twice last night for trips to the bathroom. She is good at nudging me when the time comes. I still get up with her and escort her there and back even though she is becoming more capable. I just want to be sure that given how sleepy she would be that there are no falls on the trip there and back.

Eggs and bacon for breakfast. I told Laurie that we had eight eggs and 12 yolks. She laughed and wondered about this. It was in fact true. I had picked up two dozen eggs, 12 of which were double yolks. I can't recall ever having these but they were the eggs coming down the egg lane at the farm on Saturday morning. Her appetite continues to grow and she basically eats everything that I give her.

A call was returned from Laurie's case manager this morning. She has now confirmed that Laurie's very pricy chemotherapy drug is covered by the Ontario Drug Benefit Plan. The pharmacy has the pills for pick up and my bill will be $2.00. This is a saving of nearly $2,085.00 which makes me the shopper of the week. Having had this good news I then received the bad.  The hospital radiation scheduler called to say that Laurie's treatments would not begin this week. Based on the two scans taken yesterday, the oncologist decided to treat Laurie on a different piece of equipment that would be better for her. This makes perfect sense to us. So, the treatments will now begin next Tuesday in the late afternoon at the General Hospital. I also confirmed that there are no treatments on holidays like Labour Day. If a treatment is missed for any reason, then that treatment is tacked on to the end of the program. Currently, her last day of radiation would be October 12th.

With the change in plans I needed to reschedule the nurse who was to come this Friday.  I also confirmed an appointment that arrived in today's mail. It concerned a CT scan in early September for 9:00 p.m. I wondered if the time was correct. So I called and discovered that it was. Apparently, the CT team takes appointments up to about mid-night. The person that I spoke with told me that most of the calls that she takes related to the same question that I had. I offered the suggestion of writing the time as 21:00 and 9:00 p.m. in brackets. She did not really say much at this point about my recommendation which I felt was of some value. So, another CT appointment at the General. This will be used to gauge the changes to the tumour based on her early radiation treatments.

The speech therapist also called to reschedule her visit. We came up with Friday afternoon as that day was now fully ours to spend as we please.

Caught up on the laundry and cleaning which always makes me feel good at the end of a day.

August 24, 2011 (Wednesday)

Summer continues here in Eastern Ontario. Laurie seems at ease today and reports having a good sleep. I noted that she was up three times for nature calls but I don't think that she realizes this as much as I do.  Our real estate person came over to tidy up some loose ends (no, we are not moving). She is also a nurse and remarked how good she thought Laurie was - both mentally and physically. She asked again when the operation had been. Given this she said that Laurie is doing remarkably well. This made me very happy and Laurie smile.

About 10:00 the home care person came for a four hour sitting. Having this arranged permitted me to take the car into Ottawa to get it serviced. I had called for an appointment when I knew that I had a four hour window of opportunity at hand. I spoke with the service staff member and explained my situation in a general way. I said that I was not expecting fast service like a formula 1 pit stop but that I did need some quick consideration when I arrived. He promised that this would be the case. So, as I was walking out of the door to look at the shiny and expensive 2012's on the lot, our car was being driven off quickly - hoping by a mechanic and not a thief.  True to their word I had fast service and the main part of my free time was over. I then did some grocery shopping and picked up some new crisp Egyptian cotton sheets. Having a few sets of new sheets will make Laurie more comfortable I think, especially if the next steps of her treatment will lead to her being in bed more often. It has been a while since I have shopped for sheets and was therefore a little bewildered at the selection of colours, cost and the sizes. Of course the size I wanted must be the most popular because my choices were very limited. What I thought, and bought, was a dark blue sheet was in fact not. Upon closer inspection in day light, I had bought what was fashionably described as "liquorice" in colour. I would call it simply black and they are going back.

Arriving home 40 minutes before my due time, I found Laurie and the home care lady enjoying the front deck. They had eaten lunch, gone for a short stroll and had kindly collected the empty trash can and recycling boxes from the end of the driveway. The lunch dishes were also washed and air drying. This is like having a domestique and a friendly one at that.  We spent the rest of the day relaxing and me cooking dinner. Laurie has been very helpful in deciding what she would like to eat for all of her meals.

It rained hard at times over night but for short bursts a time. The sound of thunder was a continuation for minutes at a time. We felt secure and comfortable even at 02:00 and even with the old sheets on the bed.

August 25, 2011 (Thursday)

A very quiet day as there were no appointments to attend to or persons scheduled to arrive. It was supposed to be the day of Laurie's first radiation treatment and start of the chemotherapy. She is doing quite well again today. She is progressing along with better recall it seems each day. She now knows the order of the seasons, forwards and backwards. She is starting to get involved in light domestic things and moving more independently.

In the afternoon we journeyed into Kemptville for a couple of items. In particular, Laurie was in need of some new woman's upper foundations. Well, the store we went to had large enough overhanging signage that you could see them from the parking lot. Some of it did not quite make enough shopping sense to me to know what it was. The main thing is that Laurie did and we found ourselves in two large aisles of woman's upper undergarments - advertised as being in the "intimates" section. I did not think that I could be of much help especially since Laurie did remember to bring her glasses along. Looking at all the little numbers on the garment tags I didn't know if it was a size or the product number. Feeling quite helpless I simply carried the various items to the change room for her. I did much better in the cookie department though. We also picked up some new socks for her. There was a bag of six pairs of socks from a major sock manufacturer for the price of $5.00. Good socks by all appearances. I don't think that you could ship one pair of socks from anywhere to anywhere for under $5.00. And these socks were made in the U.S.A.

We drove back home under a sky that was at one moment sun and the next looked as if the storm chaser crew would be passing you to try and get the best pictures. A heavy tower of rain seemed to be parked over our general area and I thought about the advantages of not having to water for another week. Then again I just had the car washed and was trying to weigh these two outcomes for maximum benefit. I still have the clean car and maybe some flowers to water tomorrow.

We started to watch another mystery series that we have on DVD. This series is called "Lovejoy" and is from the mid 1980s onwards. We watched it several years ago and really enjoyed it. I can not recall how many episodes there are but they do cover quite a number of years of production. Laurie is already looking forward to tomorrow's show.

August 26, 2011 (Friday)

The day is another nice summer day here. Windows open and everything appears to be in order. This has indeed been a week of calmness before what may be a rather dark and stormy week ahead. Laurie and I were up only once last night. This makes a big difference in how refreshed she feels in the morning. She takes her pills both morning and evening. These continue to treat any potential swelling in the brain and for dealing with related stomach issues. She takes these with yogurt in bed. Recently, this is followed by a cup of Irish breakfast tea which she quite enjoys.

Breakfast is going well. She is having fruit, something hot (bacon and eggs or porridge), toast and juice. She knows that she needs to improve her strength for the days and weeks ahead. It is just past lunch time here. She has been reading another mystery novel. She has indicated a desire for us to go to an antique show that we have usually attended over the past years. This is tomorrow and it sounds like a good opportunity to go out as the weather is supposed to be perfect. I will try and find that "chair in a bag" thing that I believe we still have unpacked someplace in the basement. This would be handy should she get a tad tired while walking or waiting for my negotiating with a dealer to come to an end - for something that we don't really need of course. Her wanting to do this type of activity is a positive sign that the Laurie of old is returning. This week has shown this to be the case in many ways.

I am apprehensive as to the effects of both the radiation and chemotherapy treatments that start next week. I have read and reread the information picked up at the hospital on the side effects that may occur. She seems to know about these now but has not shown that much concern. I realize that she is taking the practical approach here and understands that to achieve more success in dealing with her illness that her journey along the road to recovery may at times be difficult.

Enjoy your weekends and please continue to think of Laurie.

Mark

Meals, mysteries and memory

August 19, 2011 (Friday)

Good morning / afternoon / evening everyone -

 

As you now know, Laurie's past, present and future challenges are on a blog. You may be reading this on the blog or in the original format. It is the same story but simply different forums.

 

Laurie knew what a blog was probably about 40 years ago. Maybe I am a bit off on the actual number but I would guess that it was about that long. The blog she knew then was actually spelt Blogg. This is the surname of some of her relatives. Like the name "Consaul", the name "Blogg" is fairly rare. Checking the Canada 411 website shows only 20 listings of the name across Canada. If you include family members in these households then perhaps you have 50 Bloggs. Since Canada 411 lists persons with listed land-line telephones only then add maybe 20 more Bloggs. Currently, Laurie's cousin who lives in Ohio, was a Blogg until she was married. Her aunt in Toronto was also a nee Blogg. She recently passed away in her 84th year. In Laurie's family, the siblings were predominately those with XY sex chromosomes so the number of Bloggs may be declining.

 

I am pleased that this blog is up and running. This may be the first blog that some readers have been exposed to. I have very limited interest in blogging myself unless the blog relates to the results of combining water, hops, barley and yeast together. There are some very good beer blogs and when I have the time do like to roam about them. If you have any suggestions about this blog then please get in touch with me. I will likely need to defer to Marian for the technical issues but any feedback is welcomed.

 

August 15, 2011 (Monday)

My day began with a list of tasks that I could do by telephone. However, once I began the various calls I was wondering if it was a holiday Monday. Messages left on answer machines hoping for an answer. Eventually the calls did come in. Our telephone number is for a cellular telephone so taking calls is easy if I am out in the garage or the garden or elsewhere. I have home care arranged for this Wednesday and also on Thursday for a couple of hours each day. Shopping and some other tasks outside of the house will be done while someone sits with Laurie. At this time, she should not be left alone in the house just in case something happens.

 

The most important and good news of the day is that Laurie's first radiation appointment is now scheduled. It will be on August 25th. The bad news is that it is at 09:00 at the General Hospital. If Laurie is even stirring at that hour then I am pleased. So, it will be a challenge for her to get up and be out the door for this appointment. This is also the day that she will begin the chemotherapy.  Starting on that day, Laurie may be experiencing various ups and downs that she has yet not encountered. All provisions are being provided for right now. We will receive a longer term schedule at her first appointment. I guess that I am hoping for a non rush hour time but all things considered, any time is good. The treatments will be at the hospital that is further for us to drive. Good thing that it is the summer and not the middle of winter.

 

I keep her informed of the current day events and those planned for the next day too. She usually does not remember what is scheduled unless I remind her on a regular basis. She knows about her six weeks of treatment but can not relate to the possible side effects. I have mentioned these but not emphasized them.

 

Oh yes, the movers obviously received the message that the move had been cancelled (or they simply forgot to come). So it is a good thing that I did not place a wager on this. I may be buying cans of Old Milwaukee instead of my usual micro or craft brewery beer. Whew.

 

August 16, 2011 (Tuesday)

We had a house call from Laurie's home care case manager. This was very much welcomed. She explained various things to us that are very much needed for the practical and reduced stress living that we would like. We now know, for instance, that a nurse will come over the day after Laurie's first radiation and chemotherapy treatment. As well, nurses are basically on call 24/7 should Laurie require the level of care that I simply can not provide.  This might be, for example, the administration by injection of an anti-nausea drug when the pills are not sufficient. Some explanation of how the drug plan is supposed to work was given. The very pricy drug that was prescribed is apparently not covered by the Ontario Drug Benefit Plan. The case manager is following up on the alternative of having the Trillium Foundation provide some funding.

 

I find it difficult to think that some cancer patient's drugs are fully covered and some are not covered at all by the Ontario Drug Benefit Plan. I assume that because Laurie has a rare tumor that the drugs are quite a bit more expensive than the more common cancer treatment drugs. I don't find this at all right and is in my view quite discriminatory. Sure, it would have been better if Laurie's tumor was more common and more understood and the drugs would likely be provided for free. However, this is not the situation. I am pleased that the case manager is aware of these drug programs and the limitations and options that are tied into them.

 

We saw Laurie's GP in the afternoon. She is a very pleasant woman who gave Laurie a huge hug on seeing her. The doctor remarked that Laurie is showing tremendous progress at this time. In terms of meeting the doctor in the months ahead that is really up to Laurie and to some extent myself. The doctor is receiving the hospital results and reports which is impressive. I had thought that perhaps the information the hospital doctors had was a long way from getting into the file management system. But it appears that some information is flowing. The doctor did notice that the dosage for the anti-swelling drug Laurie was prescribed is different if you look at the surgeon's prescription and what the pharmacy has given me. The difference is in fact double with the pharmacy upping the daily dosage. I have been following the surgeon's original plan so far. I will call the pharmacy tomorrow and get this issue sorted.

 

Back home for some tasty lasagna that arrived on the past weekend courtesy of one of our visitors. A supplement of some basmati rice and bits of chicken rounded out the dinner. Laurie headed for the closest padded horizontal surface for some well needed rest. It was a long afternoon for her. We watched another episode of Poirot and she nibbled on some cheetos which is one of her favourite comfort foods. Laurie is somewhat of a night owl so to see her going to bed at 21:30 is rather uncharacteristic.

 

 

August 17, 2011 (Wednesday)

The weather here in Oxford Station continues to be very summery. It is the type of weather that you just want to sit out on the porch and enjoy the day. That is exactly what Laurie did a couple of times. These were after lunch with her dessert and also with the 40 minute session with her speech therapist. This was the second visit and several new exercises were given. I did not stay for these as I thought Laurie would focus better one-on-one. I was preparing the shopping list as later in the day the home care worker would be giving me some respite for a couple of hours. I also moused around in the garage trying to determine what critter was trying to eat its way out and if it had accomplished its task.

 

Laurie is seemingly better in a number of ways. Although still quite tired she took the initiative twice to go outside on the porch. This used to be somewhat of a struggle for me to fully justify her moving from the comforts of a sofa to a stiff plastic deck chair. As well, her walking is improving. She does have a cane that I encourage her to use. This cane, or stick as I refer to it, is some reassurance as she is more independently moving about the place. It is interesting that the stick tends to disappear quite frequently. If she is in the living room and is going to the dining table I will inevitably ask her where the stick is. After a brief search it is found in the bathroom, in the dining room or possibly on the front porch.

 

The case worker showed up promptly at the designated time (hospital staff please take note). She is beginning to know Laurie and what she likes and is capable of doing. I am comfortable in that the three visits so far have been by the same person. So, off I went into town for some serious grocery shopping. I missed getting soup which of course happened to be at the top of the list. I also missed the Q-tips. I must have walked the pharmacy row items twice looking for this. While nearing the front of the store on the third time around I saw two bored cashiers so I dropped the thought of ever finding the Q-tips and opted for a reasonably quick check out. My orders tend to be large as I want to have things in the house that Laurie may wish to have. I have even had to put some of the juices in the downstairs beverage centre. Putting juices in here is a rather novel idea as the only beverages that have been there are those that are brewed, and typically from a craft brewery. 

 

Laurie had a good dinner and this must help her physically. I am asking her if she can taste the different foods and she usually can. The reason I ask is that in the future one of the side effects of her treatments may be loss of taste. So, I am trying to get a pre-treatment idea of what foods she can taste. I have been told that some foods are good to retain the sense of taste, such as pineapple, when chemotherapy is being administered.  We ended the day with another case solved by Poirot and a very tasty Italian dessert that I remembered to begin thawing at 15:00. She enjoyed both things. It is the first night she has elected to do some reading in bed - a mystery of course.

 

 

August 18, 2011 (Thursday)

Today the earth climatic systems began to rebalance the weather in our region. The wind has picked up and the temperatures have been in the low 30s. Laurie's morning temperature was up past 99 degrees (Fahrenheit of course) which was the highest since her first day after coming home. A hearty breakfast of oatmeal, some blueberry bagel, a bit of yogurt and a spot of tea seemed to help bring it down. And then of course it may have been the Tylenol that she wanted.

 

About 10:30 another home care person came for a two hour stay. This enabled me to drop a form off at Laurie's GP and get that soup and some other items that I had overlooked during yesterday's excursion to the grocery store. I even found the Q-tips today. I also went to one of two storage lockers that we rented in order to help with the move logistics. A friend on the weekend helped to almost empty one of them - the one with the boxes of books and books and more books. I completed the task today and they are now all back downstairs. It was very prescient of us to label each of the boxes with the contents and the weight beforehand. Now I can easily locate the DVDs as opposed to the VHS tapes and back issues of Trail and Landscape. Her care person had an easy time with Laurie. They sat on the front porch for over and hour. Laurie then found the living room couch until I came home with the things that I should have had yesterday - except for the storage locker stuff. The care person had been going through my recent copy of Canadian Home Workshop magazine when I arrived. I wonder if she found the article on reinforcing wood joints as informative as I did. Perhaps I will remember to leave a variety of magazines on the coffee table for the next visit.

 

Laurie continues to impress me with her appetite. Lunch was soup and salad with fresh watermelon and the remains of our friend's most excellent fruit bread. I read once that of all the fruits one can normally obtain in North American, the watermelon was the most nutritious. And I thought that these were 99.9999% water. Laurie lavished the watermelon and her eyes were hopefully thinking that I had more downstairs. Unfortunately not the case but noted for the next grocery shopping.  The rest of the afternoon was spent resting and she indeed fell asleep. Even my grunting and groaning with carrying the heaviest boxes (about 22 Kg or 35 lbs) downstairs could not stir her.

 

An Italian themed dinner consisting of our friend's tasty lasagna, caesar salad and pistachio pudding was appreciated. She snuck off to a corner of the house and rested until we took the stairs to the basement where our TV room is. Seeing her walk the stairs with much more confidence is really good to see. She uses the stick just in case but her best friend is that sturdy hand railing that I put in some years ago (replacing the tooth-pick sized one that was installed by the builder). She is back in bed reading her mystery book now. I should mention that we do a ten minute speech exercise each day. She is excellent in some of the exercises but is challenged with others. I still find that to be a mystery - why naming the four seasons presents so much difficulty but that naming of the months is fine.

 

I have on occasion said something in French and Laurie has understood and responded in French. You sometimes hear of people who have incurred brain injuries to have knowledge of something that they never had before. I am just waiting for Laurie to start talking to me in Gaelic or tell me the first 1,000 number of pi.

 

 

August 19, 2011 (Friday)

In an effort to let everyone know how the week went, I have asked Marion to post the update before the end of the day. Perhaps this is a schedule that I should be working towards - the Friday afternoon update. 

 

We were up three times last night for calls of nature which breaks up a good nights rest. However, as she is encouraged to drink lots of fluids then these calls are necessary.  A good breakfast of bacon and eggs and half a bagel is far more than she usually eats when healthy. A little walk down the road in front of the house again in fine weather. The perfect summer day has returned. I don't imagine that a feather could be suspended in the calmness. She is now resting again on the magic dream couch. I foresee a late lunch and maybe just being able to persuade her to have it out on the back deck. There, she should be able to get her vitamin D and enjoy the day before settling down for another rest.

 

Still no word on the drug prescription situation. Now I know why our VISA has such a high line of available credit on it. I was hoping to hear by now rather than have to start making more telephone calls. There is supposed to be that Friday drop off sometime this afternoon with things that a nurse may need if she is called upon to come out. Can't imagine what may arrive.

 

We have friends coming over on Sunday which will be good for us both. Something to look forward to before the start of next week. The MRI is scheduled for 08:00 at the Civic Hospital. This will be hopefully followed up by a trip to the nearby greenhouse so that she can look at her recently trimmed grasses. Then it is off to the General Hospital for an afternoon appointment. This is to fit her head gear for the radiation treatments. This is a cross between a fencing mask and the old time goalie masks. Tuesday is the return of the speech therapist and Wednesday I have a four hour respite care time slot. Thursday and Friday see both the radiation and the chemotherapy treatments beginning. This week could perhaps be viewed as the calm before the storm. Time will certainly tell.

The Recovery continues

August 14, 2011 (Sunday)

 

Good morning / afternoon / evening everyone -

 

As you will read the type of lesion that Laurie had mostly removed is quite rare. It is often perceived that having something rare or different is a good thing - it makes one a more unique and sometimes, interesting, person. Imagine that you are the only one on your street with a place in the Loire Valley that you prance off to when the urge hits to taste some new vintages. Or, if it is a nice day, you take that Porsche Carrera GT2 RS out of the garage and clean the carbon out of the engine.  But, in the medical world, being rare is not probably a good thing to be.

 

Consaul - now that is a pretty rare surname. In fact, across Canada there are only some 25 to 30 persons with that name. The origin is apparently Pennsylvania Dutch. Checking one of the larger genealogy websites produces a count of 268 persons with the surname of Consaul. Of this number, 73% are in the USA and 27% are in Canada. This makes my estimate a little low by comparison. However, the fact is, you could probably fit all of the Consauls into Don Cherry's for wing night and still have loads of room for the hockey game crowd.

 

If you looked at the names of the entire world population of 6,775,235,770 (World Bank -2009) then I presume that you would find just one Laurie Consaul. In percentage terms this is 0.0000000146% rounded up. The only percentage that I can think of as being smaller is the rate my credit union is paying on my savings account.  If you have Googled your name (and why wouldn't you have already done so), you will likely be surprised at what comes back. For me, I find it interesting that so many hits have been returned. Those at the top of the list are certainly for Mark Armstrong but there are many of us with this name. To find something actually relating to me you also need to enter some strange statistical term in the Google search function.

 

Searching for Laurie Consaul is easy. What gets returned is for her unless it is some strange combination of the words "Laurie" and "Consaul" referring to something completely different. There are pages of stuff.  You don't need to enter a middle name or initial to know that it is her. A diverse number of topics and interests appear within a few seconds unless you are still using an IBM 8088 or Hyperion computer. I find it amazing that this functionality is there - for us to use for whatever way we like. Of course, you need to filter out all of annoying pop-ups and silly advertisements. My thoughts about all this? I simply want to see more entries appear when Laurie's name is searched in the years to come. She has such promise in everything that she does and wanted to pursue.  She is unique.

August 10, 2011 (Wednesday)

We were looking forward to the day ahead. First we had the speech therapist in for her second visit to the house. She is still evaluating Laurie's abilities and will then develop a program to work on specific weaknesses. It is amazing how much I pay attention to what and how I am speaking when the therapist is talking to me. After about 30 minutes, Laurie's interest declined and the session ended on what would be a medium note. Laurie is scheduled to have her third session next week. The first of two appointments of this day were over.

 

We were to meet Dr. M., the radiation oncologist at 14:30 for a consultation. We arrived at the General Hospital about 30 minutes before to register Laurie and get acquainted with the layout of this hospital. It is much like the Civic only there are bowls of colourfully wrapped candies in various places. I believe these are for both the staff and the patients.  The waiting room was quite comfortably arranged with nice leather or leather-like furniture. The seating does become somewhat uncomfortable if you were to sit there for say, one hour and 20 minutes. Which is of course exactly what we did. What bothers me the most about this, and it is not the fact that I had already reached the maximum for daily parking, is that someone could have called us and told us that Dr. M. was running late; or possibly a marathon and was only half way through. A quick telephone call could have saved us all of that waiting time.

 

We were then ushered into a consultation room and again the waiting continued. It was about 25 minutes later that the doctor came in and we began the discussion of Laurie's illness and the radiation program that he would be providing. Depending on a large number of factors, the radiation treatments can be quite varied. In Laurie's case, she will be having a treatment Monday through Friday for six weeks straight. The actual radiation bit takes about five minutes. The preparation time and the winding up time takes about one hour for each session. This hour does not include the waiting room time of course. This treatment could take place in one of two hospitals. Our preference is the closer one to home but only time will tell. It was nice that the doctor did apologize for his being tardy as we concluded the meeting.

 

There may be quite a few side-effects as you can imagine. Again, everyone responds a little differently. Expectations are that things like swelling, redness, loss of hair, tiredness and nausea may occur to different degrees. This is more or less how I feel coming out of a tough meeting at the office. The side effects of radiation are typically most acute after the first few treatments. So, the main thing is that there is a radiation team in place for Laurie. She requires an MRI to start with and then some sort of mask is created that will accurately line up the radiation equipment to focus on her tumor. Also of importance is that the mask keeps her head absolutely still during the sessions.

 

Off home during rush hour and in a monsoon. My sugar level was running a little high (I can't imagine why) and we just wanted to get home and rest before some dinner. What ever happened to the notion that there is no rush-hour in Ottawa in the summer months?

 

August 11, 2011 (Thursday)

After yesterday's marathon wait at the General Hospital, we were a little tighter on the scheduling. A new route to the hospital got us there about 10:30 which was 30 minutes before the appointment. At 10:40 we were called into the consultation room. This was wonderful. However, the consultation room is essentially the waiting room without lots of people walking by you and complaining about the delays they had with their appointments. So, we waited until 11:10 and a doctor came to talk with us and have Laurie do some physical movements. This was the not the doctor we were expecting. The other doctor, Doctor N. would be coming in later. So, Laurie was asked lots of questions to ascertain her level of memory recall. She still has some problems with knowing what season we are in and recalling words that the doctor has given her to memorize.

 

Then Dr. N. came in and not surprisingly asked some similar questions that Dr. S. just did. I don't believe that this was part of any memory testing however. Dr. N. took us through in some detail what chemotherapy was about. In the view of the doctors working with Laurie, the radiation is the primary treatment. The chemotherapy is useful in targeting the bad cells that are not really next to the lesion that remains. To attack these with radiation is just not practical. So, beginning with the radiation Laurie will be taking one pill each day after taking another pill used to help with the nausea that the chemotherapy drug usually induces in patients. This means one pill each day for six straight weeks. Then after the radiation stops, she will continue for about six months with the pill but only five consecutive days per month. This is probably because unless you are addressed as "Sheik" or "your royal countess" or some other rank of royalty, you can not afford the pills for the other 25 days in the month. Yes, the chemotherapy drug is very pricey. Now I understand why it is so difficult for some people to find the money to pay for their hospitalization and subsequent recovery.

 

In talking about Laurie's illness, Dr. N. said that only about 0.5 to 1.0% of all brain tumors are like what she has. When the doctor in the Civic Hospital told us that what Laurie had was rather rare I now fully understand. The issue here is that with so few persons having this there is little in the way of clinical studies having been done. Therefore, issues like side effects and recovery times are not that well understood or reported upon. All information is useful to us at this point. I can surf around and see what information there actually is out there that I may be able to understand.

 

The rest of the day was basically resting and then an episode of Poirot before formally retiring. Tomorrow is free of appointments which is good for her. Two consecutive days of being in town with appointments does negatively impact her energy level.

 

August 12, 2011 (Friday)

It was three weeks ago that Laurie's journey began with a trip to the local hospital. It is incredible to think that so much has happened to her, to us, since then. We spent the first two weeks in the hospital and it was one week ago today that we came home. Laurie had her second visit from the home care person who remarked after the three hour visit that Laurie was looking stronger. This is of course encouraging. Laurie and her visitor sat out on the front deck for about an hour after I had left for Ottawa. Her being outside is another positive thing and I am hoping that she does this on her own initiative.

 

I drove to the green house in Ottawa and trimmed all of the plants that she has there. I must admit that a second career as a hair stylist is a definite possibility. Those plants look great now and apparently will be healthier for having had the trimming. I don't recall if I was talking to them as I worked but I may have. Laurie feels that they may need some follow-up attention in about a month's time. I am thinking of us visiting there on August 22nd after her appointment at the Civic Hospital. She has an early morning MRI which will be used to direct the radiation oncologist's plan of attack. This means that her radiation treatment will begin that week at the earliest. So as of now, her schedule for next week is relatively light. I had hoped for an earlier radiation start date but I think that so far we have been very fortunate in getting her the services she has required.

 

August 13, 2011 (Saturday)

Saturday in Oxford Station is usually pretty quiet and today was no exception. We did the usual morning routine and decided that we would go the pharmacy to pick up some things. Included on the list was her chemotherapy prescriptions. The pills were special ordered but I assume these arrive by the next day, which they were. I went in first to do some boring post office stuff and to get her prescriptions. The pharmacist assistant came over and when told the surname had the pharmacist come over to talk with me. The first thing I went over with her is that there are three containers with the same drug but in different doses. Laurie's dosage will encompass different numbers of pills from each of the three different bottles. Good thing that I am reputed to be good with numbers. The anti-nausea pill is much more straightforward as long as you remember it is taken before the chemotherapy pill.

 

The drug amounts were entered into the cash register, or computer, and a total of just over $2,090.00 came up. Ouch. And most of the cost is already covered by her work insurance. The pharmacist took the VISA card and put through the transaction. Having almost completed the transaction, she asked if I had the card from the doctor that basically waived the fee for the chemotherapy drugs. Uh? "Yes" she said. "Right here, you see this code. It means that you should have gotten a card and you would not have to pay not very much at all". So, I am thinking two things. The first is "Why was I not given this card if it was on the prescription?" and secondly, "How much is "not very much at all"? The first question the pharmacist could not answer. I will need to call the radiation oncology people on Monday to find out what is up. She did answer my second question. "About $2.00". So, what may be a simple oversight by the hospital staff could have cost me over two thousand dollars. Once paid it would be virtually impossible to get the money back. So the drugs are still at the pharmacy. It is a good thing that they are not immediately needed. Knowing they are there is the most important thing. This helps to substantiate my feeling in that the biggest issue with our hospital experience continues to be communication related.

 

August 14, 2011 (Sunday)

Today has been pretty much the same as all the days that we have been home. Warm, calm, smell of rain in the air and occasional thunder in the distance. Good summer weather if you don't feel like doing much. Laurie's perfect recuperation type of week. Any minute progress is better than anything regressive. She had some visitors today who all remarked that she is looking stronger than the last time they saw her. I would have to agree. We now have some additional good food in the house thanks to those who made the Sunday drive to Oxford Station - thank you kindly for that.

 

The swelling now is basically gone as is the discolouration. I think that she is noticing this as well when she looks in the mirror. She has never said anything about the scar though which is somewhat intriguing. Her hair is growing very quickly over the part that was shaved for the operation. I believe that she has had more hair growth in the past ten days than I have had in the past ten years!  She is able to fully shampoo her head which is refreshing and makes her pleased. The hanging sentence is still something that I am wondering about. This is something that the speech therapist will be asked about during her visit this week. She will begin to say something but not be able to complete the thought.  I am noticing more of this and I simply let her try to continue and do not ask her what she meant.

 

Tomorrow was to be the first day of our move to Newfoundland.  Some of you may not have known this but we were planning on this move since the spring. I have emailed the moving folks and re-emailed for a confirmation that the move was cancelled. So, I fully expect that sometime tomorrow morning the packers will arrive with tape and sharpies in hand. I don't know if I would place on wager on this but time will tell if I could have made myself some beer money.  The move is something that I do not talk to Laurie about and she does not either. A lot of our household things have actually been boxed up and stored. This was an undertaking that consumed us for the months of May, June and into July. Things like books, clothes, nick-nacs, stuff we never used, etc. are now not readily available. I can't believe that we packed 237 boxes and still have stuff around. We have less clutter and less of everything like under the kitchen and bathroom counters. Much of this stuff was thinned or tossed or sent to a museum. I think that some of our bathroom articles have expiry dates in Roman numerals.

 

So an early night for us, and especially for one of us in particular. Raining lightly and serene in the Station. Enjoy the week wherever you may be.

 

Good night from Oxford Station -

 

Mark