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.