I hope that you all had a peaceful and healthy holiday and that the new year is being favourable to you. Although Laurie was home for Christmas and the start of the new year these were times that did not seem to mean very much to her. Santa came for us both and Laurie seemed to engage in some of the usual Christmas past times. Of significance was her enjoyment of the traditional food and treats. We still have the small Christmas tree up and the lights on. The two stockings are situated not over the fireplace anymore, but in another living room location. These are reminders of a special Christmas. Although for the most part we have been resting at home, things have not always gone as well as hoped. I don't know exactly what I was hoping for but more progress, as she had after her first surgery, would be nice. My main objective is to keep Laurie as comfortable and safe as possible while monitoring and assessing her physical signs.
Sunday, Jan. 22, 2012 marked the sixth month of Laurie's initial admittance to a hospital for her then unknown illness. Six months ago our lives changed. Six months of difficult times interspersed with smiles, laughter, hugs and of course, tears. At several times over the course of a day my eyes well up. I think of Laurie now and everything that we have done over the years and my emotions let go. She is not around when then happens as I am doing as much as possible to keep giving her positive energy. She is eating three good meals a day and I must thank those visitors who have kindly brought us a nice variety of good healthy food. Laurie must like the new selections as I certainly do. One friend recently brought along what must be the world's largest lasagna. It is very nutritious and seems to be an ideal food for lunch or dinner (but not for both meals in the same day!). Laurie is also drinking a lot of juice and water throughout the day. She likes coffee but she is only taking one cup of decaffeinated coffee. This is due to an advisory on caffeine consumption on one of her medications.
Something happened to Laurie during her second hospitalization in December in terms of a urinary infection. She is still coping with being incontinent. This certainly does not help in her gradual recovery and daily activities. I must say that having gained a lot of experience with incontinence products, that I now place these in my top ten inventions of all time. I used to pass by these products, as well as those nutritional supplements, in the drug and grocery stores without much thought. Now, I carefully read and compare the various products making sure that the size, gender and the absorbency factors are all correct. Same scrutiny goes for the meal enhancement beverages (we call them milk shakes). So far the products are holding up quite well. She continues to take a nutritional drink but the quantity has been scaled back. She is gaining some weight, which I attribute to her lack of exercise and high consumption of juices and lots of food and of course her prescription drugs. Reducing the amount of the high caloric beverages is one way to help control her weight.
I have bought her some new fleecy light outdoor things that she wears in the house. She seems to like these and I do too, seeing that the post-Christmas holiday prices are excellent in the outdoor storewhere we like to shop. The length of pant legs is usually quite long however and I am certainly not a tailor. One of Laurie's two weekly home care workers has offered to do some tailoring next week on these pants while she is here - because it is a safety issue. Typically, Laurie is very quiet and sleepy while I am getting eight hours of weekly respite time. I head into Ottawa or more closely, Kemptville, to do shopping and other things. It was difficult to receive regular home care time each week until I went up the ladder and explained to Laurie's case manager that the service in the past was not sufficient and that communication was very poor. I obviously spoke with someone who cared enough, or was important enough in the hierarchical scheme of things, since the quality of care is now improved.
I started this update indicating that Laurie's recovery had not gone as well as hoped. In fact, there was a quite scary incident that took place in early January. It was even scarier than the following....
It was in the summer of 2008 that Laurie was on a field expedition down the Hornaday River in Tuktut Nagait National Park with some colleagues collecting plants and taking photographs. I was at home in bed one night when I heard the front door knob being turned and worked. My heart began to beat a little faster and I laid there wondering what the heck was going on. Naturally, a break-in was my first thought. So, I got up and picked up one of the fireplace implements on the way to the front door - in my PJs of course. The door knob was still being disturbed as I approached the door in the darkness. I failed to see anything through the windows in the door and thought that someone must have been crouching and fiddling with the door. As I got a closer look and my shaking increased, I saw a large furry raccoon hanging off of the door knob. As I breathed a tremendous sigh of relief, the critter continued to try and elevate himself up the door. There was a bird's nest under the porch roof on top of the window trim and I guess that the raccoon was looking for a midnight snack. I carefully pushed the door open with the fireplace poker being close at hand. Once he felt that his chances of a successful climb were over he causally walked back into the forest and I climbed back into bed. Later that year we bought a front screen door.
And then there was Reykjavik in 2009. We decided to lavishly indulge a couple of nights in the downtown Marriott. This was a pretty nice hotel and compared to the B and Bs and small inns that we usually stayed in was quite the place. Parked the car right outside the main doors for the stay and walked Iceland's capital city for two days. Then came the check-out. I had been quite pleased to have negotiated a very good price at the hotel seeing that it was September and there were no large conventions in town those days. Having paid a Holiday Inn price for this hotel was a real deal. The clerk presented the invoice in an Italian leather case while I got my credit card ready. The room amount was originally agreed upon in Icelandic Krona which I was used to paying out and doing mental currency conversions so I knew, more-or-less, the Canadian dollar equivalency. The bill presented was in Euros and I rather did a double take on the bottom line. I knew taxes were high but something else was amiss. As Laurie was studying the hotel lobby artwork I was somewhat hyperventilating. As the clerk was busying herself with something else, I knew that there was a serious error here. I looked at the room number and it was not ours. I also noticed the dates of the stay were incorrect. As it turned out, it seemed like the Sultan of Brunei, Warren Buffet or some such person had been staying in the royal suite for a month or two and I got their tab. Hai carumba! After a quick review of things, the clerk produced the correct bill and I had enough Krona left over for some coffees at Cafe Paris. Laurie came back wondering what I was up to and I said that everything was now fine and off we went after paying my agreed upon price (plus extortionate and not previously known taxes) to enjoy some good Icelandic brew and baked goodies.
An even more scary incident took place on January 6th, 2012. On January 3rd, Laurie had a blood test for a medication called dilantin. This drug has been given by me since last August when Laurie was released from the hospital after her first surgery. The dilantin level is normally in a range of 40 to 80 (some units here). A low level of dilantin increases the risk of a seizure and too high a level means that the person can go "toxic". Having received no call from the doctor who ordered the blood test, we felt that Laurie was in the normal range. I found out at 02:00 on January 6th that she was not. After just having returned to bed after a trip to the bathroom, Laurie had a seizure. Now, we use "carpe diem" as part of our email address which translated means to "seize the day". I was certainly not expecting a seizure in the night! It was truly frightening and the incident lasted about 45 seconds. I held her in my arms not knowing exactly what would happen and only thinking the very worst of things. After the seizure ended, I called 9-1-1. The paramedics arrived about 20 minutes later and attended to her. I was happy to have them there and they gave her oxygen and took her vital signs. She slowly regained her strength but had absolutely no idea what had happened to her.
They took Laurie out on a paramedics chair into a very snowy night. It was very quiet outside as the snow fell heavily. I was going to follow the ambulance to the local hospital once I got a bag of things together that she might need. I watched as the ambulance drove away through the falling snow with the flashing lights sending a cascade of colour onto the snow and trees. There was no need for a siren for which I was happy about. I was very anxious and had some difficulty in getting organized for the trip into Kemptville. In the hospital Laurie had a second seizure at 04:00. A nurse was with us at the time and the doctor came in. I was totally in panic mode at this point as three or four hospital staff were there with her. She was given an IV of dilantin and some other IVs to settle her down. A decision was made to transport her to the General Hospital that morning about 07:30. The weather was very difficult to drive in and I was happy that Laurie had bought her Subaru Forester (with good winter tires).
Laurie was first located in the emergency care area. The on-call oncologist that weekend came in and we talked about what had happened to Laurie. He seemed very good as a doctor and it was interesting that he wore a mask the entire time. After more blood samples (some were taken at the local hospital as well), Laurie was taken to a room on the fifth floor for observation. It was a single room which pleased me. While I did the admitting paperwork, I was told that Laurie would have a single room based on her coverage - if one was available. The room was quite nice and came with a good view. This was a Saturday and the hospital floor was on weekend was quieter than during the weekdays. She did have an MRI done on the Saturday. The tumour appeared to be the same size as it was the last time that she had a scan done. I guess that I was pleased with this result although a better one would have been that the tumour was smaller than before.
At this point I did not realize why Laurie had the seizure, nor exactly did the doctor. So, keeping her in the hospital for 48 hours was the plan. I certainly did not want to have her back home again right away if she was going to have another seizure. That weekend Lisa, Laurie's younger sister, came up and stayed with us. She can testify that the level of nursing was virtually non-existent that weekend. You have heard of the RN, the registered nurse, but have you experienced the NN, the negligent nurse yet? Or the NCN, the non-communicative nurse? I will not relate the truly irresponsible manner in which the staff treated Laurie. I did take the doctor's suggestion of taking Laurie home Monday on a Leave of Absence. This meant that she was officially still registered in that same room should she need to go back. The official discharge would take place on Monday by telephone should I feel that Laurie was doing alright at home. That Sunday night at home did not see me sleeping very much. Any small noise from Laurie had me sitting up and turning on the bedside light to see if she was OK. To some extent, I still do this but I ask her if she is OK before turning on the light. After a few days being back at home, I decided to call the unit manager of the fifth floor and relate some of the problems during Laurie's two night stay. I had noted in point form beforehand the various things that the NNs and the NCNs did not do for her care. He spent about 15 minutes on the telephone apologizing for what had happened and had assured me that he would be taking my issues up with those involved. He told me that he would report back to me but so far no call has come.
What is most distressing about this entire ordeal was that the seizure was entirely preventable. The blood test (taken at the Queensway Carleton Hospital) was done on Tuesday, January 3rd about 13:00. The results of the blood analysis should have been available to the doctor on Wednesday. This is especially the case if the specific level of her dilantin was outside of the normal range. So, according to the doctor, Laurie's report was sitting somewhere not being reviewed when it should have been. In my view, and here comes the venting, some idiot or idiots are not communicating when it is absolutely necessary to do so. IF, these idiot(s) had performed their job in the health care field, then Laurie would not have had a seizure. Her dilantin dosage could have been immediately increased on Wednesday and the seizure would not have occurred. So, I called the Queensway Carleton and tried to speak to someone about this. I got as far as leaving a voice-mail, to which, ten days later, no one has called back. Not only did Laurie, and I, experience this most terrible of events, but the cost to the health system was preventable too.
So, here we are on January 24th. No sign of a reoccurrence of a seizure. However, Laurie's dilantin level was toxic and she had been experiencing some strange things as a result. Last Thursday, her dosage was reduced and today her blood sample was taken. It takes five days for an accurate reading of dilantin following a change in the daily dosage. We find out tomorrow if she is now in the acceptable range or further adjustments will be made. I think that she may still be riding high or perhaps at the top end of the normal range. Rather than waiting for the doctor's assistant to call with the results, I will call them by mid-afternoon if I haven't heard. This will be my standard method of getting the results of any blood analysis. It goes without saying, but I will anyways, I will never get a blood sample done at the Queensway Carleton Hospital. What is especially irking is that Laurie was on her chemotherapy cycle of five days on and 23 days off. She had completed her third day of pills when the seizure happened. She did not complete the entire cycle as the oncologist decided to suspend the last two days of pills. Our health care system seems to be lacking some serious patient care.
Moving on. Next week we meet the oncologist who originally ordered the blood test and is responsible for her chemotherapy. I hope to begin the second cycle that evening. We did consult the radiation oncologist about two weeks ago. He said that the chemotherapy is the best strategy at this point. If the scans show that it is not performing as desired, then possible pin-point radiation may be done. However, she has had so much radiation that it becomes risky to perform much more. As well, a possible third surgery could take place. Having the least obtrusive treatment is certainly preferred but we really want the most affective one to be done. So, where is Laurie now? It is difficult to say but she is really not very well along the road to recovery after the six months of treatment and recuperation. Even though she has looking pretty good back in November, the tumour is still present and causing her memory loss and speech and recall problems. Physically she is doing reasonably well. She continues to not ask the tough questions and not complain about her situation. She is certainly a very strong willed and determined person who continues along with me at taking life one day at a time.
We meet the surgeon on February 8th - a week earlier than originally planned. I believe that this advancement of the meeting date is more connected to a family spring-break than to Laurie's condition but we will know soon enough. The surgeon is one of the doctors on Laurie's cancer team along with the two oncologists and her GP. I keep thinking that there must be a team leader - someone that I can call when I feel that Laurie should be assessed. I feel that the time spans are too long for her in terms of receiving scans and having meetings with the doctors. She is not exhibiting much progress in her mental faculties which points back to the dilantin problem or the tumour situation or possibly both. I simply have a difficult time thinking that waiting for periods of three and four weeks for something concrete to take place is not beneficial for her. These are issues that I will raise with each oncologist and the surgeon when we meet.
A big challenge for us currently is that Laurie has great difficulty in sleeping at night. Two different sleeping pills have been prescribed but they seem to have little effect. So, we are up about every 90 to 120 minutes after turning in. Night is seemingly turning into day and day into night. This shift of sleeping cycles is becoming very exhausting. It is one of the reasons that I have been so long in getting an update posted. I always seem to be in the middle of something else and when I do have some time, that is, when Laurie is truly sleeping, I feel so tired that it is difficult to write. I should be having a cat-nap at the same time that she is. Her GP is concerned about this and said to me last week that she would like to visit the house sometime this week. Still waiting for the call to come to arrange for the visit.
So, this is where things stand. Before winding up, I must relate something that happened to us on January 3rd at the Queensway Carleton Hospital. We were waiting quite a while for the blood test to be taken (a further waste of time it seems) when I heard a familiar voice. I looked around and there was our neighbour from 18 years ago. He has cancer and was there with his wife. He was also waiting for a blood test too (I wonder if he ever got the results?) and we chatted about things and life for a while. He is the same age as myself and continues along being very optimistic that 2012 will be a good year for him and especially for Laurie. I can only pray that he is right.
