On Friday, a number of Janet's friends arrived for a ceremony led by Karen Goodfellow called the honour circle. I wasn't actually at the ceremony, but that won't stop me from writing about it anyway.
I left after Karen arrived and returned 2 hours later after getting my spirits lifted at the Frog and Firkin a few blocks away. I returned to find many of Janets friends in the living room and a feeling of warmth and goodwill permeating the atmosphere. I ran upstairs and checked on Janet as I always do and found her energized smiling and very happy with the ceremony. She loved it. My mother Betty and niece Chanel (Daphne's daughter) also attended the ceremony.
Friday was a peak for Janet. She benefited from the paracentisis the day before and was energerized by the love, light and warmth of her friends. Janet rested on Saturday, she had two short visits with friends and slept much of the day. I was a bit worried about her on Saturday as she really seemed really depleted of energy.
That changed today though when she announced to Marilyn (who is visiting us again) and I that she wanted to go to Urban Fare and do some grocery shopping. She got herself up, got dressed in very fashionable brown pants, black top, scarf and a brown beret. Walked to the front door and hopped into Marilyn's green volks beetle and the two of them drove off to Urban Fare. I was totally amazed as this was the opposite of the Janet of the day before. Marilyn and Janet picked up some groceries for Sunday night dinner and stopped in at Whitespot for fries and triple O sauce (Janet's fav) before she returned home for a nap.
I have installed a computer and a decent monitor in the bedroom so that Janet can listen to internet radio stations (a little habit she has picked up from her geeky husband) and watch videos and Internet downloads of American Idol and other favorite programs. I also put a web cam in the bedroom so I can keep an eye on her remotely while I am downstairs.
I will be forever grateful to the women that have worked so tirelessly to help me in my mission to make Janet's life as happy as possible. You know who you are, and you are all truly angels. I realize that we are all frustrated by how little we can do to improve Janet's quality of life but its important to remember that your visits, kind words and efforts have such a big effect on both Janet and I. Thank you.
Sunday, January 27, 2008
Thursday, January 24, 2008
Big Challenges Big Rewards
Janet went in for her paracentisis on Thursday. Janet hates the procedure which involves a shot of local anesthetic to her abdomen followed by insertion of a needle to remove excess fluid. Typically between 1.8 and 2.4 litres of fluid is removed. The physician uses an ultrasound machine to ensure most if not all fluid is removed. Janet then spends an hour or so in the medical day unit while her blood pressure is monitored and if all is well she is released. She is currently on a three week schedule with this procedure performed every three weeks.
As Janet has become weaker paracentisis has become more a big deal because it requires two trips to the hospital, one for blood tests and one for the actual procedure. Janet has to get dressed and get to the car, sit in the car for at least a half an hour drive and then get out and get to the lab or medical imaging department to have the procedure performed. Its a lot for a person in a weakened state.
On the plus side the procedure does make her feel much more comfortable by reducing the fluid pressure on her stomach Reducing this pressure also significantly increases the odds that any food she eats will be retained by her system.
Janet learned after the second time she had paracentisis that the best way to get through it was to take an Antivan which is a muscle relaxant.
Todays game plan went roughly like this. Janet up and showered and ready to go by 10:00 am (I had to help her get ready). We put Janet in the wheelchair to get to the car and I drove Janet to the hospital where Karen Corcoran was waiting with another wheelchair, borrowed from the hospital. Janet transferred to Karen who wheeled her to the medical imaging department for the procedure and stayed with her until the Medical Day Care Unit released her. Karen then drove Janet back home where I met her with a wheelchair. Its a bit of a hassle but the rewards are as follows:
As Janet has become weaker paracentisis has become more a big deal because it requires two trips to the hospital, one for blood tests and one for the actual procedure. Janet has to get dressed and get to the car, sit in the car for at least a half an hour drive and then get out and get to the lab or medical imaging department to have the procedure performed. Its a lot for a person in a weakened state.
On the plus side the procedure does make her feel much more comfortable by reducing the fluid pressure on her stomach Reducing this pressure also significantly increases the odds that any food she eats will be retained by her system.
Janet learned after the second time she had paracentisis that the best way to get through it was to take an Antivan which is a muscle relaxant.
Todays game plan went roughly like this. Janet up and showered and ready to go by 10:00 am (I had to help her get ready). We put Janet in the wheelchair to get to the car and I drove Janet to the hospital where Karen Corcoran was waiting with another wheelchair, borrowed from the hospital. Janet transferred to Karen who wheeled her to the medical imaging department for the procedure and stayed with her until the Medical Day Care Unit released her. Karen then drove Janet back home where I met her with a wheelchair. Its a bit of a hassle but the rewards are as follows:
- 3 litres of fluid removed (a record for Janet)
- Janet feels much more comfortable now and likely will for at least a week, perhaps more
- Janet ate and retained half a turkey sandwhich, a can of Sprite, 3/4 of a Boost drink and a small bowl of Chilli. Its been weeks since Janet was able to retain this much food and calories in a single day. This really helps to put some strength back in her. She actually spent an hour this evening downstairs watching TV and her brother in law John N. commented that she looked much more alert than she has in quite a while. The calories provide immediate benefit.
- As Janet is more comfortable she will likely sleep better and this will contribute to her overall well being.
Paracentisis is definitely in keeping with our objective of making Janet more comfortable and treating her immediate symptons. These days its a big challenge for her, but it does have big rewards at the end of the process. We think its worth it.
Wednesday, January 23, 2008
Monkey Business
Janet's sister Marilyn is a Monkey. Well almost. Actually she was born in July 1956 and in the Chinese calendar that means she was born in the year of the Monkey. I was also born in 1956 (June) so I too am a Monkey. Janet likes to joke that when Marilyn is visiting there are 2 Monkey's in the house. Monkey's are known for their cleverness, or what Janet refers to as Monkey business. Marilyn and I decided to apply that cleverness to improving Janet's view of the world. We rearranged the bedroom furniture so that when the new hospital bed arrived Janet could see the Northshore mountains from her bed.
This afternoon the red cross delivered the adjustable bed with many air pockets and also a bed tray and a bath seat and a wheelchair. Janet loves her new bed. We have positioned it in the space we cleared in the bedroom and on a clear day, such as today, she has a very decent view of the Northshore Mountains. We are hoping the bed will put less strain on her back which has given her trouble lately.
Janet continues to read or (have read to her) emails and comments from this blog site. Tomorrow she will go to BGH for paracentisis. This is the procedure where they drain excess fluid from her belly. We both hope that after the procedure she will be able to hold down more food (and calories). I have booked Sunday through Wednesday of next week as family and rest days for Janet. Janet knows that she is fortunate to have so many friends who care about her. The last few months have been an interesting lesson for me on much one person can influence other peoples lives.
On Tuesday Tim Draper a long time TELUS employee and friend of Janet's visited us. Tim is known for his "good questions" and he asked me after the visit what I remember most about Janet when I think back on the time she and I have spent together. I gave him a quick answer about how happy she was the first time we took a cruise together. It was a fast off the cuff answer without a lot of thought. However, the question really stuck with me and I have sought to find an answer in a single word and I have found the answer. The word is "fun."
Janet is fun. She has always been fun. She may always be fun, although at some point in the future, that fun might only be a laugh when we think back on how much fun we had with her. Last night Janet asked for a couple of hours on her own to rest without Marilyn and I (the 2 Monkey's) popping in and checking on her every 15 minutes. Marilyn and I made dinner for ourselves and drank some wine and about 45 minutes into the couple of hours we realized that we already missed Janet. Even when she is very sick, Janet is still fun and we miss her when we are not interacting with her.
Janet and I continue to be in awe and count our blessings for the friendship and support we have received from all of you. Both Janet and I feel like we are a part of a very large, very supportive family that includes all of you. Thank you for all you have done so far to brighten up this phase of Janet's life. I remain committed to making her life as comfortable and as happy as possible.
This afternoon the red cross delivered the adjustable bed with many air pockets and also a bed tray and a bath seat and a wheelchair. Janet loves her new bed. We have positioned it in the space we cleared in the bedroom and on a clear day, such as today, she has a very decent view of the Northshore Mountains. We are hoping the bed will put less strain on her back which has given her trouble lately.
Janet continues to read or (have read to her) emails and comments from this blog site. Tomorrow she will go to BGH for paracentisis. This is the procedure where they drain excess fluid from her belly. We both hope that after the procedure she will be able to hold down more food (and calories). I have booked Sunday through Wednesday of next week as family and rest days for Janet. Janet knows that she is fortunate to have so many friends who care about her. The last few months have been an interesting lesson for me on much one person can influence other peoples lives.
On Tuesday Tim Draper a long time TELUS employee and friend of Janet's visited us. Tim is known for his "good questions" and he asked me after the visit what I remember most about Janet when I think back on the time she and I have spent together. I gave him a quick answer about how happy she was the first time we took a cruise together. It was a fast off the cuff answer without a lot of thought. However, the question really stuck with me and I have sought to find an answer in a single word and I have found the answer. The word is "fun."
Janet is fun. She has always been fun. She may always be fun, although at some point in the future, that fun might only be a laugh when we think back on how much fun we had with her. Last night Janet asked for a couple of hours on her own to rest without Marilyn and I (the 2 Monkey's) popping in and checking on her every 15 minutes. Marilyn and I made dinner for ourselves and drank some wine and about 45 minutes into the couple of hours we realized that we already missed Janet. Even when she is very sick, Janet is still fun and we miss her when we are not interacting with her.
Janet and I continue to be in awe and count our blessings for the friendship and support we have received from all of you. Both Janet and I feel like we are a part of a very large, very supportive family that includes all of you. Thank you for all you have done so far to brighten up this phase of Janet's life. I remain committed to making her life as comfortable and as happy as possible.
Monday, January 21, 2008
Sunday Visitors
Janet had visits yesterday (Sunday) with Anna and Jim, Joycelyn, John Nicholson and Linda and Scott.
Before dropping by our place, Anna and Jim went over to 555 Robson (TELUS' downtown office) and cleared out Janet's cubicle and desk and brought over three boxes of stuff for Janet to go through. Jim and Janet determined I was not eating enough (apparently no one has noticed I am still running 10 lbs over my ideal target weight) and Jim cooked me up a omelette sandwich, which was delicious. Jim and I reviewed all my tech toys and home networking setup while Janet and Anna went through the boxes of office stuff. Janet was pretty tired by the time Jim and Anna left and slept for a couple of hours.
Jocelyn popped by for a visit at 5:00 pm, followed by John Nicholson at about 6:00. At 7:30 pm Linda and Scott Harrison showed up and Linda and Janet had a good long talk. For those that are following the Janet and Linda "thing" both claim that while they still do not agree on "something" peace has been reached on the subject.
Janet ended her day by once again savouring a slice of double cheese and pepperoni pizza. We had mixed success in getting calories in Janet on Sunday. That unfortunately is how it goes sometimes. Right now its more important that she enjoys what she is eating and drinking than what happens afterwards.
She took a muscle relaxant and went to bed at about 10:00 pm. She woke up about midnight complaining of bad back pain and I gave her a pain killer. She woke up again at about 2:30 am complaining of "nagging" low grade back pain and I administered another muscle relaxant and she more or less slept through until about 9:00 am this morning.
A quick view of the schedule reveals that she has a very busy week. Its starting to look a bit like my work schedule. We all know that Janet loves people and would not be happy without them. That said, I am concerned that she gets enough rest. She needs much more sleep than healthy people right now and rest definitely impacts the quality of her life. As the story above illustrates she doesn't always get a good nights sleep.
Knowing that we are all very concerned about Janet's welfare I am going to ask that visitors plan on no more than a 30 minute visit with Janet, and that we keep group visits to no more than 2 people at a time. Karen's healing circle on Friday is an exception to this.
My parents will be arriving in town on Wednesday and are planning on staying in Vancouver for at least a month. They have always been very close to Janet and want to be close to her at this time.
Janet's sister Marilyn is arriving this morning and will be staying with us for a couple of days. Janet is very close to her sister and its great to have her here to help. I know that her husband Dave and my niece Stephanie will miss her, but her efforts are going to a great cause.
I can't tell you enough how much the emails and support we receive from all of you mean to Janet. I know she feels surrounded by love and light.
Before dropping by our place, Anna and Jim went over to 555 Robson (TELUS' downtown office) and cleared out Janet's cubicle and desk and brought over three boxes of stuff for Janet to go through. Jim and Janet determined I was not eating enough (apparently no one has noticed I am still running 10 lbs over my ideal target weight) and Jim cooked me up a omelette sandwich, which was delicious. Jim and I reviewed all my tech toys and home networking setup while Janet and Anna went through the boxes of office stuff. Janet was pretty tired by the time Jim and Anna left and slept for a couple of hours.
Jocelyn popped by for a visit at 5:00 pm, followed by John Nicholson at about 6:00. At 7:30 pm Linda and Scott Harrison showed up and Linda and Janet had a good long talk. For those that are following the Janet and Linda "thing" both claim that while they still do not agree on "something" peace has been reached on the subject.
Janet ended her day by once again savouring a slice of double cheese and pepperoni pizza. We had mixed success in getting calories in Janet on Sunday. That unfortunately is how it goes sometimes. Right now its more important that she enjoys what she is eating and drinking than what happens afterwards.
She took a muscle relaxant and went to bed at about 10:00 pm. She woke up about midnight complaining of bad back pain and I gave her a pain killer. She woke up again at about 2:30 am complaining of "nagging" low grade back pain and I administered another muscle relaxant and she more or less slept through until about 9:00 am this morning.
A quick view of the schedule reveals that she has a very busy week. Its starting to look a bit like my work schedule. We all know that Janet loves people and would not be happy without them. That said, I am concerned that she gets enough rest. She needs much more sleep than healthy people right now and rest definitely impacts the quality of her life. As the story above illustrates she doesn't always get a good nights sleep.
Knowing that we are all very concerned about Janet's welfare I am going to ask that visitors plan on no more than a 30 minute visit with Janet, and that we keep group visits to no more than 2 people at a time. Karen's healing circle on Friday is an exception to this.
My parents will be arriving in town on Wednesday and are planning on staying in Vancouver for at least a month. They have always been very close to Janet and want to be close to her at this time.
Janet's sister Marilyn is arriving this morning and will be staying with us for a couple of days. Janet is very close to her sister and its great to have her here to help. I know that her husband Dave and my niece Stephanie will miss her, but her efforts are going to a great cause.
I can't tell you enough how much the emails and support we receive from all of you mean to Janet. I know she feels surrounded by love and light.
Saturday, January 19, 2008
The Importance of Pizza
Janet sometimes gets food cravings. Its a bit odd and I suspect it may have something to do with a medication she is on, a steroid which as a side effect stimulates her appetite.
She has been through a number of cravings for things that were absolute must have's for a short while and have subsequently passed by the wayside. These have included, Hedgehog Ice Cream, lemons and particularly lemon sorbet, blood oranges, fresh squeezed lightly pulped orange juice (she mixed this with Champagne on Christmas Morning) and her latest which is double cheese and pepperoni thin crust pizza.
The best thin crust pizza in our neighbourhood comes from Rocky Mountain Pizza Company which is only a few blocks from us. They use all natural organic ingredients (including organically fed beef etc.) and tack a extra dollar on every bill to go towards saving the planet. Most importantly they have some kind of Mongolian oven in there which cooks up a really great pizza. Yesterday I found a parking spot within 2 blocks and picked Janet up a 10 inch double mozza and pepperoni pizza. She eats it one slice at a time, savours each bite, and has been working on it for over 24 hours now. Usually the pizza doesn't stay down. But that doesn't matter. The important thing right now is that Janet really enjoys the taste and pleasure of actually eating the pizza. After watching Janet savour each bite of her favourite pizza I don't think I will ever be able to gobble down a pizza again. Its a real lesson in enjoying what you have while you have it.
Janet has had a good day although I would like to have seen her keep more calories in. She spent some time this morning reading emails and well wishes from friends and visited with her Dad and her Dad's wife Joanne and with her friend Anna M. and with Patrick T this afternoon. Janet usually gets tired after each visit and has a sleep for a little while before the next visit. Its good for her to get these cat naps in.
We have had to deal with very little pain today. I get Janet to rank her pain on a scale of 1 to 10 and I break out the serious pain killers once it reaches 5. So far today pain has not gone over 5 and this is an improvement over yesterday. Janet's back has continued to bother her but today its been more an irritant than actually painful. We were able to control that with muscle relaxants instead of pain killers. Its a small victory and it makes for a much more pleasant day for her.
She has been through a number of cravings for things that were absolute must have's for a short while and have subsequently passed by the wayside. These have included, Hedgehog Ice Cream, lemons and particularly lemon sorbet, blood oranges, fresh squeezed lightly pulped orange juice (she mixed this with Champagne on Christmas Morning) and her latest which is double cheese and pepperoni thin crust pizza.
The best thin crust pizza in our neighbourhood comes from Rocky Mountain Pizza Company which is only a few blocks from us. They use all natural organic ingredients (including organically fed beef etc.) and tack a extra dollar on every bill to go towards saving the planet. Most importantly they have some kind of Mongolian oven in there which cooks up a really great pizza. Yesterday I found a parking spot within 2 blocks and picked Janet up a 10 inch double mozza and pepperoni pizza. She eats it one slice at a time, savours each bite, and has been working on it for over 24 hours now. Usually the pizza doesn't stay down. But that doesn't matter. The important thing right now is that Janet really enjoys the taste and pleasure of actually eating the pizza. After watching Janet savour each bite of her favourite pizza I don't think I will ever be able to gobble down a pizza again. Its a real lesson in enjoying what you have while you have it.
Janet has had a good day although I would like to have seen her keep more calories in. She spent some time this morning reading emails and well wishes from friends and visited with her Dad and her Dad's wife Joanne and with her friend Anna M. and with Patrick T this afternoon. Janet usually gets tired after each visit and has a sleep for a little while before the next visit. Its good for her to get these cat naps in.
We have had to deal with very little pain today. I get Janet to rank her pain on a scale of 1 to 10 and I break out the serious pain killers once it reaches 5. So far today pain has not gone over 5 and this is an improvement over yesterday. Janet's back has continued to bother her but today its been more an irritant than actually painful. We were able to control that with muscle relaxants instead of pain killers. Its a small victory and it makes for a much more pleasant day for her.
Home Pallative Care and the Community Health Nurse
Janet and I were visited yesterday by a Vancouver Coastal Health Community Nurse who is on the home palliative care team. Wanda our community nurse spent about an hour with us and explained how Home Palliative Care can help us. Both Janet and I were very impressed. Wanda made many notes on Janet's condition asked a lot of good questions and reviewed all her prescription meds. She made some excellent recomendations on timing and delivery of Janets meds as well as some over the counter products that will help Janet. Its good to have a trained professional helping us out.
On Monday a representative of the home Palliative care team will come by to review Janet's bathroom, shower and bed and make recommendations on any changes to make Janet's life a bit easier.
We also now have a list of numbers to call 24 hours per day if we need help, have questions etc. Its a big relief for me to know that help is close at hand if I need them.
Janet had a pretty good day yesterday. She is having a bit more of a problem with back pain. This started last summer mostly as an annoyance but over time has become an issue. We are treating the problem with some meds and so far have been able to manage the symptom fairly effectively.
Thats all the news for now.
On Monday a representative of the home Palliative care team will come by to review Janet's bathroom, shower and bed and make recommendations on any changes to make Janet's life a bit easier.
We also now have a list of numbers to call 24 hours per day if we need help, have questions etc. Its a big relief for me to know that help is close at hand if I need them.
Janet had a pretty good day yesterday. She is having a bit more of a problem with back pain. This started last summer mostly as an annoyance but over time has become an issue. We are treating the problem with some meds and so far have been able to manage the symptom fairly effectively.
Thats all the news for now.
Friday, January 18, 2008
Janet's Condition and the F Words
Janet, Marilyn and I have been having some fun with F words.
F words we don't need are:
F words we do need are:
F words we don't need are:
- Flowers
- Food
F words we do need are:
- Friends
- Family
- Fun
- Frivolity
- Friskiness
Feel free to add your own to the comments ...
Thursday, January 17, 2008
Latest Health Update
Unfortunately the news is not good. For the past couple of weeks Janet has had a great deal of difficulty keeping food or liquid down. As a result she has lost more weight and has become progessively weaker. She has had to work at sipping water and gatorade in order to stay hydrated. Her Oncologist was very concerned about this symptom and scheduled her for a medical test to find out what was happening to food or liquid that she consumed. Her sister Marilyn, who has been staying with us for the past couple of days, took her in for the test yesterday. It was a difficult test for Janet in her weakened condition because she had to drink and hold down fluid containing a radioactive trace and then have xrays taken at various times after consuming the liquid. Janet, always the trooper, hung in there and did her best, and as a result the radiologist managed to get some excellent pictures of exactly what was going on. This means that her medical advisors now know why she is having difficulty retaining nourishment. It is because of multiple bowel obstructions caused by the cancer in Janet's peritoneal (tummy area) cavity. We met with Dr. Lam, Janet's Oncologist earlier today and she explained that the bowel is a flexible tube that has no internal support or structure. Food and stool pass through it as a result of smooth muscle contractions on the outside. Janet has cancer that has attached to the outside of the bowel and has effectively collapsed the bowel in a number of places so that virtually nothing can pass through the tube. Operating on Janet is not an option because of the amount of cancer in the area and also because she is not well enough for major surgery. Even if these blockages could be removed by surgery, or by other means, they would re-occur in other areas of her digestive system. Janet has an impending bowel blockage. We had a long conversation with Dr. Lam this morning about futures and next steps. Janet and I are both determined that she remain at home as long as possible. We have arranged for the maximum amount of palliative care within our home and a palliative care nurse will be coming by starting tomorrow. As a backup plan we have advised May's Hospice (a palliative care facility in our neighbourhood) that we may need a bed there if Janet's symptoms worsened beyond what can be managed at home. At this time we have to swing our efforts from fighting Janet's cancer and extending her life towards making her as comfortable as possible. My full time job from now on is going to be staying at home with Janet.
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