a detour....

Since the last update ten days ago, Laurie's health has deteriorated. To some degree we thought she would have a hard time with her second round of chemotherapy. Her dosage was higher than round one and her anti-nausea pill was of a stronger variety. She was, fortunately, not physically sick from her chemotherapy. Her temperature variation is the main concern. Normally, our temperature varies daily but the range is usually in the order of about 0.5 degrees Centigrade. Laurie's temperature is all over the map and the road to recovery has taken a detour.

 

We had eight appointments last week which made our week very tiring. Included in these was an MRI. The MRI was taken to see what impact the radiation and the chemotherapy might have had. Her radiation ended on October 17th so the MRI should show something in terms of the success of her treatments. The oncologist said that the MRI is showing that the perimeter of the tumour is in fact a little larger than the first MRI showed - before her treatments. The size of the area is about that of a Kinder Surprise. The surprise is that there appears to be nothing inside - the inside area is basically devoid of the cancer cells. Hard to explain and fathom. Another MRI will be scheduled for within the next two months.

 

It is 12:15 and I am stopping the planned update for a while. We are going to the local hospital again. Laurie's temperature is about 38C (100.4F) so under the instructions given by the oncologist we are heading out. The hospital is about a ten minute drive and we have no idea who to expect to be there on an early Sunday afternoon.

 

Well, the ER waiting room was empty, as was the staff counter and triage. After a few minutes the nurse came and checked Laurie in and did some preliminary tests and asked questions. Her temperature was 38.3C. And so, off to the ER consultation room. Fortunately for us, and the local residents I guess, the ER consultation rooms were empty. The doctor promptly arrived and after a series of questions, not so long ago asked by the nurse, Laurie needed to have a blood sample. How many nurses does it take to get a blood sample? One? Two? Three? Well, you would be right if you guessed three. Her arms look like she was in the middle of Labrador during the height of the black fly season with the various pricking and swelling on both arms and hands. The third nurse I felt had an air of confidence and demeanour that I welcomed. So, the blood began to flow into a number of vials.  It takes about 30 to 40 minutes for the results to come back. During this time Laurie simply rested on the bed and nearly fell asleep. I worried.

 

The doctor came in and said the blood test results looked alright. She had also called the oncologist at the General Hospital about Laurie's condition. He had in fact observed Laurie a while ago. One solution he said was to give her antibiotics. So the doctor was going to give us a prescription. "But wait" I said "Laurie already is on antibiotics". Well, this was news to the doctor and asked why it was not on Laurie's list of medications. I told her that we had not been asked for these. You would have thought that the on-call oncologist would have looked at Laurie's file and seen she was given antibiotics last week. Good grief.

 

So, without further ado, the doctor said that we can go. But, I had taken Laurie's temperature a few minutes before the doctor had arrived and it was about 39C. I can't understand why Laurie's temperature would not have been taken before leaving seeing that she entered the hospital with one. So, the nurse #1 came back in and yes, the temperature was 38.9C. They left two Tylenols with her to take and said we could leave. Seeing that the place was empty, I don't understand why they would not have said something like "Well, Laurie should stay here for a while and we'll see if her temperature falls. This way, you will likely feel better, especially if you get home and feel that you need to come here again". Thus, we left. Laurie was a little shaky walking out but glad that we went to the hospital. Apparently, the chemotherapy oncologist himself will call us tomorrow for a follow-up chat or perhaps visit.

 

Back to the week that was. Laurie also had an X-ray. This was done to see if she was developing any pneumonia that might account for her wild swings in temperature. After this was done we met with her chemo oncologist who described the MRI results and prescribed the antibiotics (but did he record this on the file?). Under normal circumstances, these events would not be so bad. However, Laurie is totally fatigued and usually running some level of fever. I am very frustrated of course and concerned. Our sleep has been very poor this last week and she is once again having difficulty in find words. This is quite sad since her speech was significantly better six weeks ago. I asked the oncologist about Laurie getting a flu shot. He felt this was a good idea but it should be done while she is on her chemotherapy cycle. Her immune system will be weakened between the cycles and it would be good to have the vaccine right away. So, we booked an appointment for the following day and she had her needle (I think she did but I can't actually watch).

 

We did go to the local hospital early last week due to the high fever issue. They did blood work and handed us a report indicating that for the most part there was nothing to be alarmed about. They released her without taking her temperature but I knew it was below the threshold because I carry a thermometer with me now and took it while she was waiting for the blood analysis report.  We also saw her GP who spent a good fifteen minutes with us. We had a list of questions which she was able to provide some answers.

 

The general picture of Laurie's past ten days has been painted. Not many bright colours I am afraid to say. She been going down a detour on her road to recovery I think. Both she and I are concerned about her well-being at the moment. Her hair continues to fall out rather than grow. Her eyes are very seldom more than half open. Her sentences trail off without her conveying her thoughts. All in all, a real tough week. I think that it is one of, if not the most, difficult week we had experienced since being back at home in early August.

 

The week ahead is currently open. This may change tomorrow if we are to see the oncologist again about the fever situation. Apparently, Laurie can take two of the Tylenols every six hours if required. I am hoping that these will not be necessary but needless to say we have a large bottle of them on hand. We have in fact accumulated a size number of empty pill bottles of various sizes and colours and trick lids. She is taking only a few medications now that she is between chemotherapy cycles. I keep wondering about the effects of all these different drugs and the interactions that probably have not been thoroughly studied.

 

Again - thank you to those who have forwarded cards to Laurie and for the emails that continue to arrive. I am happy that there are others who continue to think of her at a time when things were to be improving and her life returning to normal.  I hope that I will be able to report more positive news in the next update. Just think of this as your normal CBC evening news report....

Writing the last update on October 31st seems like it was just yesterday. Time is moving very slowly here. Fortunately, the movement of autumn into winter is also moving at a glacial pace. We are appreciating this abnormally warm and pleasant November and are hoping for a continuation of the same. We are pretty much at home most of the time now that the radiation sessions ended on October 17th. It is almost four months now that Laurie's illness became evident to us. A newly posted photo shows Laurie just ten days ago out bird-watching. She is looking much better and she feels that most of her days are OK. Still she has some bad days though but we all have those.  A bad day generally means very little activity or interest in things and difficulty in finding words or phrases. Looking back on her journey I am pleased to report that these bad days are outnumbered by the good ones. Two other recently posted photos show Laurie after her surgery. They are not the most pleasant or flattering of pictures but they are part of Laurie's journey.  It is amazing to see the difference that four months make in her well-being.

 

 We went into the local clinic for some blood work and have recently seen the chemotherapy oncologist. This was an important meeting and is leading up to Laurie resuming her chemotherapy pills. This second phase begins on Monday, November 21st. The drugs cost nearly $2,000 for the five days and again we are happy that our cost is about the same as a large Tim Horton's coffee. Depending on the success of this phase, she will undergo more of these each month for five additional months. She will be having monthly blood work done. The blood test results are shared among both oncologists, her GP and her surgeon. We are looking for a convergence of opinion on the diagnostics and treatment plan.

 

We are quite happy with Dr. N. who is her oncologist. He is quite punctual and shakes both our hands upon reception and departure. He is interested in knowing how Laurie is feeling and is very attentive to what she reports. He is excellent at explaining elements in her treatment plan and encouraging in her progress. We are glad that he is part of her cancer team. Dr. N. reported all indications are that Laurie is recovering as well as could be expected. She is very tired most days although we do make the effort to take a walk each day. Her tiredness is likely more attributable to the radiation rather than the pills she takes each day. Given this, it is expected that she will begin to feel less tired in the coming weeks as the time gap widens since her final radiation session. We put up the bird, er squirrel, feeder last week and she is enjoying the assortment of wildlife now arriving there. She is recording the species of birds and critters on a list that we have been using for many years now. She is quite attentive to this and will sit watching the goings on and commenting on things. She is also proactive in writing the day's events which I had begun back in July.

 

She is continuing to contribute to some household tasks in the kitchen and tinkering with things now and again, here and there. We usually play cribbage every day and it is a sort of gauge of her cognitive levels. One day she may have difficulty in counting and concentrating and the next day she is much better at these things. She continues to read most days. We have gone to the greenhouse to trim, water and talk to her grasses. I am pleased to report that they seem quite happy, especially now that the really warm weather is behind them. 

 

The next MRI is scheduled for next week. This is something that should help to monitor Laurie's situation but we have been told that it may be too early to really get a good picture of things. These MRIs will continue to be an integral part of her future. We are also penciled in to meet her surgeon in December. She is planning to bake some cookies for him which inevitably I will need to perform some quality assessment. Later this week, Laurie is attending a two hour "Look good, Feel good" workshop for women who have cancer. This is something that she requested and we are happy that is going on at this time. This is a female only event so I will find something to do at the hospital for this time.

 

I am doing my best to balance my time over the various activities here. Caring for Laurie is undoubtedly the priority. I am endeavouring to help out those at the office as much as I can. This work is frequently done late in the evenings and during the weekend. Keeping up with housework is critically important too. If this work lapses then one tends to get a feeling of being overwhelmed. We continue to be thankful for the six hours of home care that we are usually receiving each week. However, there have been some significant communication issues with the health care provider here. I fail to understand why the scheduling person can not pick up the telephone and call us to let us know what the arrangements are or are not. I have been quite proactive in trying to set up appointments to have someone here with two and three weeks advance asking. You have heard of "Untouchables" and "The Invincibles" but have you heard about "The Unreachables"? This is the one area of Laurie's recovery that I feel is lacking. I have gone up the ladder and eventually spoken with the most senior of people who are not pleased with our situation. They will look into this and find out what has been happening, or rather, not happening. However, I can not really say that there has been any of the promised improvement in communication thus far.

 

I must thank Laurie's colleagues at the Canadian Museum of Nature for their generosity in getting her a gift card. She spent a great deal of time on-line in deciding what she would like to buy. Besides adding some well needed variation to her day, she was pleased to find some programs available on DVD. These include the British TV shows Mindbenders, Kavanagh QC and Lewis. I am equally grateful as I can spend some quality TV time with her knowing that she is enjoying these shows. We continue to watch Inspector Morse each Sunday evening. This is something that we really like to watch even though it is the second time we have been engaged with the series. When I was a young lad, Sunday night programs were The Ed Sullivan Show and Bonanza. I can not recall the starting time of the latter, but I believe it was something like 20:30 or 21:00. If I was good, then I would be able to stay up late and watch Ben, Adam, Hoss and Little Joe and others on Bonanza. The funny thing is I can not really remember many of the episodes. A more recent connection to that show was about three years ago. Laurie and I drove to a man's farmhouse and sat in his kitchen to finalize the paperwork for a car that we sold him. There in the kitchen against the wall was Hop Sing's wooden floor cupboard from the Ponderosa Ranch!

 

I would also like to thank those of you who continue to wish Laurie well along her road to recovery. Cards and emails still arrive which do really brighten her day. Thank you for your thoughts, kindness, best wishes and your prayers. We keep the candle burning.

 

The Advent Calendar

 

It was just over three months ago that Laurie underwent her operation. I think of Fridays as a reference point since that is the day of the week that her journey, at least physically, began. Last Friday was a time when I really reflected on what Laurie has had to deal with over the past three months. However, I spend more time now thinking of her future and when she will turn that corner on the road to recovery and become healthy once again.

 

She is very tired these days. She could give Rip Van Rinkle, Dwarf Sleepy and Princess Aurora a good stiff run for the "Who can sleep the longest" competition. Her energy level is minimal but sufficient to get her about the house independently and make a 300 meter walk down the road and back. Her spirit is still rather good. She would like to see her energy level higher and is following doctors' orders (all three of them) in obtaining her strength. Mentally, her memory is getting better. There are still some moments where a word is not placed correctly or she has problems in describing something. These episodes are typically brief and again may be due to her low energy level. I continue to take her temperature twice a day and occasionally her blood pressure. Only once since the last update has she had a bit of a fever and nothing that a Tylenol did not take care of.

 

Her final radiation session took place on October 17th as scheduled. There were many patients in the waiting rooms when the bell sounded about 13:00. Patients and staff acknowledged Laurie's accomplishment with clapping and smiles. We thanked those on her radiation team for their professionalism and compassion over the six weeks she was in their care. That evening was the last of her first round of chemotherapy. Since then, Laurie has been taking her other pills to help reduce any possible swelling that may still be in the brain as well as an anti-seizure pill. Taking these contributes to her being tired. Although the radiation sessions have stopped, the effects of this can continue for many weeks, months in fact. She will be seeing the chemotherapy oncologist in a couple of weeks. We should know when her MRI will be taken as it is not done immediately after the radiation sessions have stopped. By waiting longer, the MRI scans should produce a more accurate image of her brain where radiation was concentrated. She did bring home her radiation alignment mask and I can not honestly say where she has put it. It is something that I really do not wish to see anymore. She has lost much of her hair but continues not to openly fret very much about it. I am gauging the amount of hair loss by what is appearing in the dryer screen and in the shower. 

 

By no long having to drive into Ottawa for her appointments I felt that we would have another three to four hours of quiet time here at the house. In fact, I am not sure how we actually found the time to make those thirty five plus trips and still have time to eat and keep the place here going. I am working more hours now at my job and for the most part this is from the house. We have had two home care visits of about five and one-half hours which permitted me to go into the office and meet my colleagues and pick up some things.  Laurie's health and needs continue to be the number one priority and I am thankful that people at work fully understand this. However, I realize that I need to continue my work even if I do so late into the evening.

 

Time is also being spent on the transitional tasks that the autumn to winter change requires. There are more than I thought but this is likely because they are being condensed into a shorter real time period. Laurie usually has helped with these things but she is not able to do so this year. This frustrates her a little bit but knows that everything will get done. We did decide to empty our other storage locker before the snow and muck that November is notorious for arrives. This job has now been completed but the basement is looking rather like a warehouse with towers of boxes, chairs, furniture and bits and bobs. Is it too late to have a mammoth garage sale?

 

On October 27th we went into Ottawa for Laurie's postponed dental appointment. The dentist's office is very close to the Civic Hospital so the drive there was full of memories over the past few months. The dental staff knew that something had happened to Laurie as it was me who had called to cancel the original appointment in July. We spoke with her dentist who was very careful about Laurie's session and knew that planned X-rays should be postponed. On leaving the receptionist gave Laurie a big hug and wished her and I well. She booked Laurie's next appointment for February 14th and wished us both a very happy Christmas. They will indeed both be very special occasions for us even though Laurie may be a little sleepy.

The Silence of Tears

And then there were two. The final two radiation appointments are around the proverbial corner. It has been a long road for Laurie, literally and figuratively. Since the start of her journey on July 22nd, there have been about 36 return trips into Ottawa to reach this point. It would have been a shorter drive to Vancouver for us assuming that serious road detours were not playing against us. Much of the traveling has been relatively peaceful and quiet. We talk; but not a lot. We think about things though. I sometimes ask Laurie what she is thinking about. Her answers are often short.  I don't press her for more information or insight.  She does seem to have interest in pointing out the idiocies taking place in traffic which are numerous and sometimes interesting. Like the time that we were driving north into Ottawa and a car coming onto the south bound 416 (a four lane highway) had stopped and did a U-turn on the highway attempting to go back up the on-ramp. OK - that was interesting. We were glad that we were going in the opposite direction.

 

The twenty-eight radiation sessions have been challenging in several ways. The side-effects become more difficult to deal with as the sessions continue. Her level of energy is quite low and she continues to lose more hair. She has mentioned about getting a wig. She is hopeful that sometime next week her hair will stop falling out and once again begin to grow. The wig comment is taken as light conversation but she is concerned about it.  We have seen her chemotherapy oncologist this past week. He is pleased with her progress and the drugs that she currently takes will end with the last radiation treatment - scheduled for Monday, October 17th. Her chemotherapy drugs cost about $225.00 per day although thanks to employee benefits and some behind the scenes financial contributions we pay only a few cents. Towards the end of November, Laurie will resume her chemotherapy but on a five days per month basis. The dosage may be as much as 2.5 times what she currently takes. The difference is that she takes these pills every day now which makes her uniformly tired. She would likely take the high-dose pills for up to six months; however she will likely be very tired the week the pills are taken.

 

We see her radiation oncologist after her last session. We will find out what the next steps will be. We know, for example, that there will be an MRI taken. I would assume that the future strategy for Laurie's recovery is based on the cancer team's review of blood work and analyses of the various images taken since the first ones were taken in July. For Laurie, she is simply looking forward to not having to make the daily commute into the hospital.  Her surgeon is interested in having a peek at the MRI and a follow-up appointment after that. It is good to know that there are multiple minds involved in Laurie's recovery. It would be good to have a consensus in what her future treatment plan will be with the view of getting her health restored. We continue to ask many questions along the way.

 

And then there were too - too many sleepless nights when only the worst scenarios filled my head. Outwardly, I displayed optimism but alone, at night, my thoughts went from white to black, light to dark and I wondered about the how and why Laurie was struck with brain cancer. I told myself that I would trade places with her, to try and have the courage that she had in her. However, for someone who gets weak-kneed at the sight of a needle, any needle, any where, having enough courage would be a real challenge.

 

For now, Laurie is getting better. Her memory is recovering quite well although short lapses are sometimes apparent. She, and I, are gaining back weight we lost since July. Physically, she is somewhat weakened by the radiation and chemotherapy but this was expected. Her humour has not left her as much as her hair has. She is taking her time in her recovery which is precisely what she has been told to do. She is a good listener. She is a good person and she will be a cancer survivor.

 

Thanks to everyone who have dropped in to the house, sent or brought cards, flowers, food and best wishes to Laurie and myself. We completed that 1,000 piece puzzle recently (actually 1,008 pieces) and had a good time doing it. Laurie's friends seem to span three generations of colleagues, friends and acquaintances. This is something that I have thought about on more than one occasion. The different life experiences of these people - you- have contributed to Laurie's well being and hope for the future. Many of you have wished her courage along her road to recovery which has aided her in ways that I can not say but do feel.

 

Stop for a moment on Monday, October 17th at 13:00 and list for the bell - the sound of happiness, of joy and inevitably, the silence of tears.

 

Thankfully Red in the Face

Growing old is not for sissies. Neither is having brain cancer. Or any cancer. Or radiation treatment. Having the combination of being old and having one of these illnesses is certainly not on anyone's wish list. It's a tough go. I see people every day of all descents, shapes, sizes, ages and illnesses. Maybe I am getting used to visiting the cancer clinic daily. But probably not. Each day is different. New faces appear and others have left upon the ringing of the bell. More of the staff now have names to go with familiar faces. The idiosyncrasies of parking, knowing when best to visit the pharmacy and who to seek out for information are becoming second nature. I bought a box of Tim-bits one day and left it at the administration counter in the radiation area. A little gesture of thanks but it seemed to make a difference in the day-to-day routines that both the staff and the patients experience.

Since the last posted update on September 19th, Laurie has taken nine more radiation sessions. The side effects are now showing. The most prominent are the fatigue and the hair loss.  Much of her hair that grew back following the operation has fallen out. More hair is appearing around the house and car every day. I think that she is a little distressed about it but she knows that it should all come back after the radiation sessions are over. There is also occasional swelling and redness on the left side of her face and head. I believe that she is managing these conditions better than one might expect or hope for.  A moist face cloth applied to her face for ten minutes several times a day makes her feel refreshed and reduces the redness. She is knowledgeable about the side effects and not openly complaining. I ask how she is doing and she responds positively. However, the radiation and chemotherapy have caused her to slow down somewhat. She is now two-thirds through the radiation sessions. Her small advent type calendar on the refrigerator is something that she attends to as soon as we return from the hospital during the week days. Her half-way point session has a decorated number "16" on it.  With each session and new count down number posted, we hug and hope that each session is doing her good. Her final session is currently to take place on Monday, October 17th - something to be belatedly thankful for. 

We meet once a week with her radiation oncologist to go over how she is doing. Our last visit lasted 3 minutes and 20 seconds which is longer than all the previous visits combined. So far, the course of treatments has remained the same although she may be taking a reduce dosage of one of her drugs later this week. She has not needed to consult the radiation nurse lately which is good as many others are lining up to do so. Her speech therapist has come for the last time unless Laurie feels that she would like some assistance in dealing with speech issues.

Around the house Laurie is managing to participate in new activities. This is a gradual process and one that can help her along the road to recovery. She is now writing along with me the things that happened on each day.  Her memory is steadily improving and her writing is quite good. Friends visiting the house brought along a puzzle which, according to the literature on patients having had brain tumour surgery, is something that helps in the thinking and healing process. We work on the puzzle each day until she feels that she would like to do something else. We continue to walk outside and to make a point of climbing the stairs to the basement more for exercise than necessity. Of course, we look forward to watching something good on the television. Recently, we are watching the Lovejoy series (the adventures of an East Anglian antiques dealer from 1986-1994) and also Inspector Lewis, both on DVDs that we bought. Our Sunday evening is in part spent watching Inspector Morse. Her colleagues from the Canadian Museum of Nature sent a very nice card with thoughtful messages. They also kindly chipped in to get her a gift card that she can use to buy books, music or DVDs. She is only now beginning to turn on the computer and one of the first things she did was to visit the store web-site where she can use her gift card. I am sure that she will choose carefully and enjoy whatever she decides upon.

The September weather was kind to us. Laurie read through the daily journal of our trip to Scotland last September, where it seems, every day had its share of rain. Good weather helps to heal in more ways than one. It allows us to be outside more and the sun is good for her outlook. She likes the higher air pressure associated with the brighter days. We are noticing just how quickly it becomes dark now. We have both commented that it must be very difficult for people to travel for their sessions during the winter months, especially if they live outside of the city as we do.  The concern for others is something that we both think about. Although Laurie made it through the darkest of days, others are now just beginning their journey and the outcomes are never predictable. There always seems to be a more difficult case just around the corner.

This week's schedule is much like the last two. Five sessions typically in mid afternoon means that we miss the worst of rush-hour and the diabolical street configurations that seem to choke traffic daily. We meet a different radiation oncologist this week since her regular one is away - hopefully enjoying a nice holiday someplace. No other appointments are on the calendar except perhaps for a visit to the greenhouse. The home-care visits are now reduced to the point where we call if we would like some home care for Laurie. Only a day's notice is really required for this to happen. There is no session on Thanksgiving day but she resumes her treatments the day after. We see her chemotherapy oncologist after Thanksgiving for his assessment of her progress. She seems very pleased that the sessions are coming to a close and her chemotherapy will change from daily to five consecutive days per month.

On a recent Monday visit, the radiation technician came to get Laurie from the waiting room ahead of schedule. He was quite red all over his face and his arms. It appeared that something went awry in the radiation room, that his microwave threw a fit, or that he got toasted by the sun over the  weekend. Well, he assured us that it was the latter event that caused his condition and a little bit of embarrassment. I gathered the other radiation technicians got a good laugh on Monday morning. This reminded me of the time when I worked for the Canadian Coast Guard back in the early 1980s. I took my kayak out on Georgian Bay one sunny Sunday afternoon when a good blow came through raising the waves and my dad's fears of a mishap. My dad, being concerned and also employed by the CCG, made a call to someone at the base about my situation. It was decided that a search and rescue crew would go out looking for me. Little did they know but I escaped the storm by landing on an island where I was invited to have tea, little sandwiches and a variety of biscuits by a British couple who were vacationing there. Needless to say that I was a little red in the face and embarrassed on arriving to the base for work on Monday morning. At least it made people smile and laugh and gave the lads on search and rescue a little extra on their pay cheques.

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.