Plan B. What a ubiquitous thing that this has become to many of us. It can mean anything from selecting an alternate route to work should the traffic look like you are driving in Manila to what type of Ben and Jerry's ice cream to buy given that your favourite was also many other shoppers' fav. too.
Our lives here have many of these Plan Bs. In some cases, we know enough now to have a firm one in mind and even, dare say, a Plan C just in case. These plans have come in quite handy. I will relate some of these in the update below.
Given that there is a high level of uniformity now in Laurie's situation, I will dispense with the daily updates. A summary of the events having taken place since the last report will be given - both the highs and the lows of things. There will undoubtedly be some natural chronology required so that the events make more sense in their relationships.
Some of the readers had experienced the recent effects of hurricane Irene. Those more eastward of here were sure to have encountered some consequence. We had some very minor edge-of-the-storm action and nothing severe occurred. I was thinking though that storms like hurricanes, and more particularly, tornados can be an allegory for Laurie's recent experiences. Having come home from the hospital on August 5th after her initial battle with her brain tumour, she has been, generally, getting quite better in all aspects - mentally, physically and physiologically. However, as she entered into the second set of challenges - the radiation and the chemotherapy, she has regressed at times. It was like the tornado hit her hard in July and we entered into the eye and things were looking pretty good. Then the tail end of the storm came upon us and things became quite difficult for her.
Sometimes no matter how much one plans, the storm is just so overwhelming that you find yourselves helpless and it does not matter how many plans that you may have though of. Fortunately, we have not reached this point although at times it seemed that we were darn close to that.
The last update was sent on Friday, August 26. Since then we have encountered three delays in Laurie's start date for her radiation therapy. The original plan, Plan A, was that Laurie was to have her first radiation session on August 30th. As the day arrived and we were preparing for this major event, the radiation oncologist's nurse called to say that the treatment would be cancelled for that day. The rescheduled appointment was for August 31st. The first postponement was reasonably explained. On Monday, August 28th, she had a CT scan and also an MRI. Upon review of the images, the oncologist decided to change the instrument that Laurie would be treated with. So, this meant that they had to find a spot in the queue for her on this other instrument. Makes perfect sense and there would be benefits for her on this other instrument.
So, August 31st was to be the new launch date. Then, we got the word; "Houston, we have a problem". I could sort of sense this when the telephone rang and we were actually on the road to the 17:00 appointment. Apparently, the equipment broke down or in more technical terminology, there was a systems malfunction. Good thing that she was not being radiated on when the system malfunctioned I thought. So, we made a smooth exit off of the highway into the town of Kemptville which is where we rely on the pharmacists and grocers. Being somewhat disappointed, we took a Plan B for our new found time and went to see about some medication that was awaiting us at the drug store.
The prescription in question was related to Laurie's regular medication that she took before her illness struck. I saw that she had only about two weeks left of her pills and decided to reorder early. Apparently, this was a wise thing to do. The issue was that the pills were on back order for about six months. This originally caused us some consternation but the pharmacist reassured us that she would contact Laurie's GP about a suitable replacement. After several days of waiting, I called the drug store to see where we stood. There was still no decision made because the GP had not gotten back to the pharmacist. So, I told the pharmacist that I would call the doctor and get things moving. After leaving two messages at her office I felt that getting somewhere will this medication replacement may not be so simple. It looked like an Abbott and Costello routine at this point.
After over one week of inactivity, in my eyes at least, the pharmacist called and said the replacement drug was ready. This brings me back to the swift exit off of the highway on August 31st. I will not pick up a new medication and leave the store without speaking with the pharmacist as I did on this occasion. The replacement drug were little white pills that were all ready to go. We learned in a question and answer session that the active ingredient was suspended in some type of peanut based agent. Well, seeing that Laurie is highly allergic to peanuts then a problem was at hand. Plan B had failed and could have been much worse. If we did not learn of the peanut presence and Laurie had taken a pill then she would have been in anaphylactic shock and a call to 911 would have been made.
So, making our concerns of what we felt to be inadequate record keeping to the pharmacist, we left with nothing. Noting that there she had only about four or five days worth of her original pills, I went to Plan C. This was because the pharmacist told us that there was nothing else that she could provide. So, I called a drug store in Ogdensburg, New York and enquired as to the availability of her original pills. Well, they had plenty of them. Now Ogdensburg is only about a 30 minute drive from here if you obey the speed limits. The only stipulation to me getting the pills was that I needed a note from Laurie's GP explaining the shortage of the pills in Ontario (along with the prescription of course). So, this was my Plan C. However, the doctor's letter was integral to the plan and I was not able to contact her and messages left were not returned.
I explained to Laurie's case manager the situation we were in and my Plan C. She was agreeable to hunting down the doctor and getting this letter. In fact, the case manager would drive it down to the house. Brilliant. Then, the pharmacist called. She had talked with the GP and a substitute medication was identified and in fact waiting for us at the pharmacy. Good grief. With only two days' worth of pills left, the timing was rather tight. So, back up to the drug store and the new drugs were picked up after an interrogation like talk with the pharmacist.
The rescheduled radiation and chemotherapy start date was September 1, 2011 (just to clarify the actual year) at 17:20. So, getting prepared in all the various ways, we headed up to the hospital expecting the telephone to ring - likely just as I entered through the parking gate. No such call came and on we went. Before the first radiation session takes place, an appointment with a nurse is scheduled. Presumably, this is to go over all of the ins and outs of the treatment which would include some discussion on specific topics - usually the side effects. Our nurse turned out to be a five star person. She not only gave us a nice summary of the basics, she organized future appointments with a dietician, a physical therapist, and a cancer social worker. But that is not all. She arranged for an immediate blood test that Laurie's GP wanted. Then she handled the issue of my calls to the surgeon's office for a refill on Laurie's drugs not been returned. She popped out for a few minutes then came back and said that Laurie's pills would be at the hospital pharmacy counter in twenty minutes. If I had a self adhesive gold star then I would have placed it on her forehead. Laurie and I were most impressed especially since the radiation technologist took Laurie away about twenty seconds after our meeting with the nurse wound up.
Off to the first radiation treatment. We were quite pleased. As it was the first visit for radiation treatment, we were instructed on a number of important aspects. This included using your bar coded identification card to let the staff know that you had arrived. If you wanted to see a nurse or a doctor then the methods to do this are given. Your weekly schedule is given on each Thursday visit which lays out the next five or six appointments. If you have a conflict with an appointment time then the instructions for dealing with this were presented. The arrangement to see the oncologist on a weekly basis was also reviewed. Good thing that I had lots of ink in my pen and paper to spare. Finally, they tell you that you can have all the candies that you wish!
The radiation only took three minutes. The added time is due to the preparation part - the fitting of the mask and the testing bit to ensure that everything would go according to Plan A. So, Laurie came back to waiting room just as the BBC sport highlights were about to begin. We left there pleased that it was one session down and now 29 more to go. I would be responsible for the chemotherapy part as I had the $10,000 worth of drugs secretly tucked away at the house and had the instructions memorized.
Thursday, September 1st was a night to remember. At about 01:00 the side effects began. Poor Laurie. She was sick in the mixing bowl that was placed right beside the bed. This continued almost hourly for the rest of the night. Although she took an anti-nausea pill before the chemotherapy pills, the effects of having started radiation and chemotherapy on the same day proved to be most devastating on her system. So, the night was long and painful. She understood why this was happening to her. All I could do was give another anti-nausea pill every four hours and hope for the best. Morning came and it was as if neither of us really slept at all. She was experiencing what the literature and the hospital staff had indicated might happen after the treatments. To me, there is no "treat" in these treatments.
Friday saw her back at the General for her second session. The time was for 17:20 and judging by all of the optimal parking spots available, quite quiet at the hospital. It was Friday prior to the long weekend. There is a hospital protocol that one sees a nurse after their first radiation treatment and before the second. As arranged, the nurse spoke with us to get a sense of how Laurie managed over the last 24 or so hours. Having related the experiences, the nurse indicated that this seemed somewhat normal but she would like to speak to a doctor concerning a change to one of Laurie's prescription dosages. This nurse also would have received a gold star. Running five minutes ahead of time the technician took Laurie to the radiation instrument. The hospital was eerily quiet. I caught up a little on my note taking and savoured a watermelon flavoured bon bon as Laurie walked back by herself to the waiting room. A little hug and smile and she and I wondered what to do next. You see, she also had a CT scan scheduled for 21:00 in the same hospital. Since the time was only about 17:35 we pondered what our plan would be.
As we were contemplating what seemed to be just a few boring options of what to do I caught wind of a conversation from the only other people around. It was a man and his kids and a radiation nurse. He had just completed his last session in an eight week period and the nurse was reviewing some of the possible actions in his future. This man knew that there was a bell in the adjacent hallway that a person who completes their radiation program can ring. I heard this once on an earlier visit and response to the ringing was clapping from those in the waiting room and the staff. However, this being the eerily quiet night it was he went along the vacant corridor and rang the bell. The sound of the bell echoed down the hallways without a response from anyone. We felt that we should have clapped from where we were but did not. This we both regret. I wanted to say congratulations to him as he walked by us but I thought that this would have demonstrated that we had big ears. We thought of him afterwards and all the things that he might have gone through in order to ring that bell. We wish him well in his journey.
Now, I had packed a small cooler bag with some soft nourishment and drinks for Laurie to have between the two appointments. I had left this in the car thinking that a walk would help to fill the two and a half hours of waiting time. Then I thought of Plan B. Why not go and find the Module X on the second floor and find out exactly where the 21:00 appointment will be.
Now, I believe that M.C. Escher was a member of the architectural committee that designed the General Hospital. I had in fact been sent a floor plan of how to find Module X. This map is not to be handled as junk mail. With the map and after a couple of navigational failures, we did arrive in the correct location. A very pleasant person was sitting behind the glow of a computer monitor as we approached. We wanted to know if there was a chance that Laurie's 21:00 could be moved up. The waiting room only had one person and she was on a gurney sound asleep. I explained that Laurie had just had her radiation session and now she was available for the scan. It never hurts to ask so don't be shy about this. After an immediate and short telephone call, we were told to proceed down the hall and take the last door on the right to the CT scan waiting room. It seemed that either there had been about 20 CT scan cancellations or the appointment times are somewhat randomly distribution. What a stroke of luck though. I decided right then to stop on the way home a buy a 6/49 ticket (which being a statistician I did not actually do.)
Expecting more than an empty CT scan waiting room I was found to be wrong. Just the technician was there and asked Laurie to go straight on in - no change into a hospital gown was even needed. A few minutes later Laurie was done. I had virtually no time to look at any of the articles in June 2009 issue of Field and Stream. As we walked along the corridor we talked about the value of having a Plan B. The woman who made the original call for us was on the telephone as we left but she raised a thumb and smiled at our success.
So we were on our way back home a couple of hours ahead and thinking about how good things come to those who ask. We also thought about the chap who had completed his treatments and celebrated in relative silence.
The illness experienced during the early morning on Friday, Sept. 2nd was reduced by about half during the wee hours of Saturday morning. The prompt administration of the anti-nausea pill after four hours seemed to help a little. Still, the compound effects of radiation and chemotherapy was very stressing to the body. The reason that both treatments began at the same time was explained by one of the gold star nurses. The chemotherapy apparently makes the radiation more effective and thus is prescribed at the same time and not before radiation starts. It was felt that given Laurie's tough first night that the side effects from the radiation were more severe than those caused by the chemotherapy.
Meal plans have changed a little now. The traditional three meals a day are still there but the volume of the servings are a little less. A couple of times during the day, some small snacks are taken. This is now likely to be the approach over the next six weeks. I am fine with this since I can now have five meals a day rather than three. Plenty of fluids, focusing mostly on just water, is also an essential part of the treatment period. Rest and light exercise have been, and will continue to be, important aspects of recovery.
The weekend was a little better in terms of her sleeping and the level of her treatment side effects. Saturday night was actually a good night with no sickness being experienced. In part, this may have been due to me giving Laurie an anti-nausea pill at midnight and at 04:00. The Plan A is to get up for a few minutes to give the drugs as early as possible according to the prescription and then hope for the best. The Plan B is to try and deal with the sickness as best we can with the guidance provided. Plan C would be to call the telephone number at the radiation area and speak with an oncologist. There is at least one such doctor available 24/7 to offer advice on difficult situations. One result could be that a nurse comes down to the house and administers an intravenous drug.
Some friends came over on Sunday morning (Sept. 4th) and we had a nice time. After a while Laurie did show some tiredness and we said goodbye and thanks to our friends who not only brought their friendship but lots of nice home made goodies as well. The day ended with a episode of Inspector Morse. This will be our Sunday evening tradition as it is good to have such things. Watching these shows I can not help but think of John Thaw who passed away from cancer in 2002 and the ordeals that he faced. I read a book last year written by his wife, Sheila Hancock about their life together. I do not usually read biographies but I did quite enjoy this one. Worth the read if you enjoy British cinema. I will note that to get a copy of the book may require you having several different plans as it seems to be quite scarce.
