It is usually good to begin an update with some positive news and there is some to report. This concerns the level of the anti-seizure drug called dilantin that Laurie is taking. It seems that her dosage is now stabilizing her dilantin level which is great. The normal range is between 40 and 80 and her blood sample last week showed a level of 58. This is much better than the low and the high readings recently seen. I could tell that her level was back to normal by the little things taking place about the house. So, everyone is pleased that this issue now seems to be resolved. Laurie does have another blood test on Feb. 13th to recheck the dilantin level. If the reading is alright then the blood testing will move to a two week schedule instead of one. Hurray.
Also on the up-side is that Laurie continues to impress with her eating. I am beginning to wonder if my culinary skills have improved that much or if eating is just a different activity, in what is normally a pretty uneventful day. She is having three good meals a day and drinking lots of water and juice. I no longer give the "milkshakes" to her as her weight is more than usual and she now has to wear my pants out to appointments. I need to do some more pant shopping for her.
Laurie's physical strength is pretty much unchanged since the last update. For our visit with the surgeon last week she had to walk quite a long way from the hospital parking lot to the hospital. It was another long walk from the hospital entrance to the neurological clinic. This was a challenging walk not only for the length but also because of the slippery conditions. Ottawa has had quite a bit of freezing rain and there has been a build up of ice on roads and sidewalks. This makes for slow negotiation but she managed. Good thing that we did not hurry since the surgeon was running over one hour behind schedule.
Today we had a visit from one of Laurie's Toastmasters friends. He brought along a special TM pin for Laurie and also a letter to indicate that she had attained the level of Silver Advanced Communicator. The actual pin will follow and I am so very proud of her achievement. I have told her so every hour or so over the past two days.
Since the last update, Laurie completed a five day cycle of chemotherapy. She did very well in handling the drug and was not physically ill. She had to take a large number of capsules this round because the hospital pharmacy had run out of the 20 mg capsules and substituted with the 5 mg size. I wonder what they would have done had they run out of the 100 mg size? She takes 235 mg each day which costs about $400.00. Unbelievably, to me anyways, the oncologist said that Laurie should have a blood test done and that this could be done there - at the Queensway Carleton Hospital. I bit my tongue and said that we preferred the Kemptville clinic where people know Laurie now. I thought about the poor judgment in his advice seeing that the Queensway Carleton blood clinic was not able to convey to her doctor her blood results which ended up with her having a seizure in early January. I sure hope that his choice of chemotherapy is better than his choice of blood clinics.
On February 8th we sat down, eventually, with the surgeon. He asked Laurie how she felt and she responded "fine. He asked if her right side felt OK. She said "yes". Then there was silence. I had certainly expected more in the way of questions and perhaps some physical examination to be performed. But nothing. So, I began with the first of my five questions. I took my time in asking each question and took time to write the rather short responses from the doctor. One important question concerned the fact that she is still incontinent. The response was that it is likely the tumour causing this situation and that there is nothing else that can be done. I did request that a urine analysis, including a culture, be taken on Monday when Laurie is having her blood sample done. I still feel that there may be another explanation for her condition.
Generally, Laurie is not improving in her daily functions and in her communication. If anything, there are days when things are very challenging for her. The surgeon's view is that chemotherapy is really the only realistic treatment for Laurie. Her exposure to radiation was essentially given at the maximum level. A third surgery, although previously mentioned as a possible option, would likely not be done. This is because the tumour appears to be growing but towards the inside of the brain and not towards the outside. An MRI will be done in March to see exactly what, if anything, is happening to the tumour. The only assessment of the effectiveness of the chemotherapy is the MRI. I think that better communication from Laurie would also indicate some decrease in the tumour but the surgeon did not seem to agree.
This last visit with the surgeon did not result in positive news for Laurie. The prognosis is such that unless the chemotherapy works well then she will lose the battle with the brain tumour. This could happen within weeks or a month or two. This timeframe has been known to me since she came home last December 20th when her future was described as being "a few months". These three words keep coming back to me and then the emotion sets in. The online literature that I have read seems to concur with the surgeon's perspective and I keep hoping that things will be different for Laurie.
Given the recent news and Laurie's condition, I would suggest that those of you who would like to visit Laurie here at home get in touch with me to set up a date and time. It is best for Laurie to have one person or persons visiting per day. The duration of the visit could be up to one hour or a little more depending on her strength and attention. Mondays are not good since we have a five hour home-care person that day. Thursday afternoons are also not open as we have a three hour home-care person then. Otherwise, arriving after 10:00 or after 13:30 would be alright. We get dinner going about 17:00 hours and would request that no evening visits take place.
When the blog was first posted, the story line was "Laurie's Fight for Life". After the first surgery and her radiation and chemotherapy treatments she seemed to be on a "Road to Recovery" but with the occasional detour. Laurie is indeed fighting for her life now. All I can do is keep her safe and comfortable, give your good food and help with the physical movements around the house and to the appointments. The doctor asked me about having Laurie go a palliative care place. My feeling is that she should be here as long as it is possible - in the place that has been our home for the past 18 years. This depends on me being able to manage her on a daily basis. My preference will be to maintain the way we have been living our lives since last August and to take and treat each day as special. Laurie does not speak much but she does seem to understand light conversation.
Please do get in touch and come out to our home and see Laurie. This will make her happy. Although your visit will result in her being tired later on, your being here is a continuation of a life that she once knew and enjoyed. Talk to her about the good times and the times that you shared with her. She will be unable to carry a conversation but her expressions and some verbal response will be positive for her. It is a very difficult way to end this update but although she is so very courageous, strong and determined she is in a very difficult position now with our hope placed on the success of the chemotherapy.
Directions from Ottawa - I will send these when arrangements for a visit are in place.
No comments:
Post a Comment