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.