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|Friday, March 3rd, 2006|
|Excerpt from a document signed January 12, 2006
It is MY WISH that should a situation arise that I am unable to communicate, and there is no reasonable expectation of my recovery and I am being kept alive by artificial or mechanical means, that all artificial support including support for breathing, nutrition and hydration be removed. At no time shall I be intubated for breathing support. Intrusive means of hydration or nutrition support shall be done only for temporary symptom relief, and not for long term support.
It is now down to a day or two.
|Monday, February 20th, 2006|
I am so tired of throwing up. For a few days last week absolutely everything I ate came back up and I've lost a bunch more weight. I'm down to 178 pounds at the moment. When I told my Mom she freaked out a little. She's actually on her way here so she can see for herself. Food has stayed down yesterday and today so I hope I'm over whatever the hell it was that turned me into Barfarella.
Not much else going on here, I'm tired and out of it most of the time and I need naps to get through the days. Naps are good though. I like 'em. Usually about 10 minutes after I get settled in bed CJ appears and cuddles up either between my feet or next to my shoulder so we both have a good nap.feste
had to postpone his trip to see me because his family needed him, but I'm already looking forward to the next time I get to see him. My friends from Ontario were out this week and Barb unpacked all my china, stuff I hadn't seen since it was packed last January. Most everything was intact, no major breakages after 3 moves. Pretty impressive.
Speaking of naps... I'm on my way to have one now. Here kitty kitty kitty.... Current Mood: tired
|Thursday, February 9th, 2006|
Something my friend in Ontario just e-mailed me that made me cry:When you have to walk that lonesome valley and
you have to walk it by yourself, the friends in your
life will be on the valley's rim, cheering you on,
praying for you, pulling for you, intervening on your
behalf, and waiting with open arms at the valley's end.
Sometimes, they will even break the rules and walk beside you.
Or come in and carry you out.
These are the kind of friends I am lucky enough to have in my life. She's one of them and the rest of you already know who you are. Current Mood: grateful
|Wednesday, February 8th, 2006|
The weather forecast for Calgary today was sunny and plus 10 degrees.... as I look out my window right now I see endless grey skies and snow falling.
Greg and I went to see Harry Potter and the Goblet of Fire this afternoon and coming out of the theatre the wind was icy and biting. I think we're in for a bit of a storm. Wheee!! Current Mood: amused
|Monday, February 6th, 2006|
This weekend was kind of up and down. On Saturday I was running a fever of 39.7 so the nurses were trying to get me to go into emergency. I said no, le'ts handle it at home, that's what the palliative care team is supposed to help me with. So Greg went out and picked up some prescriptions that the nurses set up through my doctor (again, I'd be lost without Greg) and I took a bath that brought my temperature back down so that I was eventually able to sleep.
I got my hair cut on Sunday. It's soooooo short, I'm not used to it yet, but it's easier to deal with when clumps aren't falling out. A big deal for yesterday was that I climbed the stairs all by myself *pats self on back*. It either means my legs are getting stronger or I've lost enough weight that I can haul myself around.
So today's Monday, the cleaning lady is coming at 1pm. She does the bathrooms and the floors for us once every 2 weeks. It makes my mother feel better that they are getting cleaned on a somewhat regular basis. I also finished my application for CPP Disability. We will send that in later today and see if they will pay me any money now that I'm unable to work.
That's it, pretty boring around here.. it'll be more exciting in a couple of weeks when feste
gets here. *happydance* Current Mood: content
|Friday, February 3rd, 2006|
What a very long day!
Greg and I left home before the sun was up to get to the Tom Baker lab this morning. I had to have my blood typed and screened for the transfusion. Then we sat around waiting while they did all their typing and screening and such until one of the nurses suggested I might be more comfortable waiting in the unit because I could lay in the bed instead of sitting in a wheelchair in the waiting room. That was the best news I had heard yet. The lab tech who took my blood sample had to poke me 3 times in order to get enough of a sample so I was just getting over the trauma of that (I don't know why but lately when anyone approaches me with a needle I tend to fly off the handle, tears start and a feeling of panic comes over me) so I was happy to be laying down under a hot blanket in the treatment unit to wait for the blood.
The nurse who started my IV was awesome, one little poke and it was all set up. No trauma there or maybe the warm blankets helped relax me to the point where I didn't care... or maybe the morphine I took that morning finally kicked in. Anyway, it was the easiest one I've had in a long time. I knew they had scheduled me for 3 units but I had forgotten that each unit takes about 2 hours to deliver
so by the time we got out of the cancer centre it was after 5pm and we were both starving. We stopped for some Japanese food on the way home and now I'm here in my chair with my cozy blanket and Greg is upstairs trying to grab a nap.
While I was laying in bed all day he was running around doing paperwork. He picked up the papers for my Alberta Health Palliative Blue Cross coverage, he got Dr. Chu to finally complete the insurance forms for Manulife which mean I can continue to get paid on my short-term disability claim (the long-term claim doesn't start until April) and he got Dr. Chu to sign a medical report which will allow me to apply for the CPP Disability pension. Usually it takes months for Services Canada to adjusicate a CPP claim but because my case is classified as terminal they have a provision that will allow them to turn it around in 2 days. Neat, huh?
So that has been my day, in a nutshell. I was feeling lightheaded and extremely weak over the last couple of days but today I'm feeling strong and I have a good appetite so I may as well take advantage of the situation. I weighed myself yesterday and I'm down another 20 pounds or so. I weigh 212 pounds at the moment which is down from about 350 in the spring. If I keep losing like this I'll be in serious trouble before too long. Not to mention I won't have any clothes that fit. Mom found some of our old boxes that have some of my older clothes in it so maybe I'll go through them when I'm back in Vancouver in May. I'm not sure what to do with the clothes in my closet now. If anyone wants to practice their sewing skills there are some fairly nice skirts, blouses and pants that could be taken in. I can put a pile in a box and ship it out to you, no charge! Current Mood: tired
|Wednesday, February 1st, 2006|
|Update for friends
I've been out of the hospital for 3 weeks and I'm very happy about that, but the folks who are monitoring my blood levels are not happy. My hemoglobin has dropped from 98 to 79 in just one week so the oncologist is concerned that there is a small internal bleed going on. She has ordered me back into the hospital on Friday to have another transfusion to try and bring that number up. I'll just be in for the day so it's not a huge deal.
Greg and I are going to visit the Memorial Society this afternoon to let them know what we want done after I'm gone. We found we can pre-pay for their services now to lock in the current price. The Red Cross finally had a wheelchair available for me so now I have more mobility, going out to appointments is less stressful for me when I know I don't have to walk any great distance.
I talked to my mother last night and she encouraged me to go ahead and book our seats to fly to Vancouver for the wedding. Apparently we still have a credit with Westjet from when we were going to go home at Thanksgiving so after we use that up the tickets should only cost about $300 for the two of us. We're going to rent a car as well to haul around the wheelchair and not have to impose on Mom or Kelli.
I posted a public update in Greg's journal for my co-workers, I'm not ready to tell people at work that my case is terminal. I'll wait until I'm safely on long-term disability before I let them know. Current Mood: grumpy
|Tuesday, January 31st, 2006|
|toast for Jan&Colin's wedding
Well Jan, between the two of us we've now had 4 weddings. Weddings are fun, aren't they? But enough is enough, Colin is definitely a keeper. I've seen how he loves you and the kids, what a great father he is and what a patient and sweet partner he has been to you. I've watched your family grow and change as you take care of each other, listen to each other and encourage each other. I wish you a lifetime of joy and I ask that you continue to treasure each other as the years go by. You can trust this fact, I may not be standing right here to watch your relationship grow but I'll be watching over you all from somewhere close by.From "Gift From The Sea" by Anne Morrow Lindbergh
When you love someone, you do not love them all the time, in exactly the same way, from moment to moment. It is an impossibility. It is even a lie to pretend to. And yet this is exactly what most of us demand. We have so little faith in the ebb and flow of life, of love, of relationships. We leap at the flow of the tide and resist in terror its ebb. We are afraid it will never return. We insist on permanency, on duration, on continuity; when the only continuity possible, in life as in love, is in growth, in fluidity - in freedom, in the sense that the dancers are free, barely touching as they pass, but partners in the same pattern.
The only real security is not in owning or possessing, not in demanding or expecting, not in hoping, even. Security in a relationship lies neither in looking back to what was in nostalgia, nor forward to what it might be in dread or anticipation, but living in the present relationship and accepting it as it is now. Relationships must be like islands, one must accept them for what they are here and now, within their limits - islands, surrounded and interrupted by the sea, and continually visited and abandoned by the tides. 12Next
|Sunday, January 29th, 2006|
Plans for the near future.... I started looking at airfares to Vancouver and I think it's going to work out for us to make it to my sister's wedding but not before that. She's getting married May 20th so I'm looking at us coming out May 17 and flying back May 24 or so. It doesn't make sense for us to make 2 trips so I had to choose between the Easter weekend or the wedding and of course family comes first. So, if all is going well, Greg and I will be in Vancouver for a week in late May.
I'm feeling a little stronger every day but I get over enthusiastic sometimes and make plans that I have to later call off. Rob&Kathleen invited us over for Saturday night and when they invited us I was feeling really good so I said yes. Then when it came time to get dressed to go out my energy level was very low so I backed out. I hope they understood.
I had an introspective moment earlier this morning when I woke up with pain in my side. I hadn't felt a pain in that place before so of course I started wondering if this was some new George attack that was going to lead to the end. I can't describe the emotions I went through, I'll just leave it there because I have no words for it.
I tried to contact my ex-husband but I haven't had any response from him. I have to respect his choice if that's the way he wants it, but I will always regret not being able to thank his parents for the influence they had on my life. They accepted me with open arms no matter what I looked like or how I acted and I want them to know it meant a lot to me. I also wanted to talk to my ex-husband one more time but again, he has chosen not to reply and I will have to respect that. Current Mood: drained
|Wednesday, January 25th, 2006|
|Lots of visitors today :)
It's been a good day today. wetbird
is here visiting and she is a wonderful distraction from my usual routine. She and gossg
can talk and talk about anything and everything and I like to listen to them until I don't understand the science any further. She also helped us decide some things, but more on that in a moment.
The second visitor was a social worker from the home care team. She came by to make sure we were taking full advantage of any social assistance we might be able to get in paying for medical expenses and dealing with insurance and stuff like that. She also helped us focus on the final step in my journey, what happens once I die. Greg and I had talked about it and decided that I would be cremated here in Calgary and he would take me back to Vancouver for a memorial service and to scatter my ashes (either at the Lower Falls in Golden Ears Park if people feel like walking the trail, or at the bridge in Upper Lynn Canyon because it's more accessible), but we didn't know what to do to make sure that all happened. Thanks to the social worker we have now been in touch with the Calgary Co-op Memorial Society about the cremation and the proper death registration and all the legal stuff.
Then the Occupational Therapist from the home care team came by this afternoon. She helped us get organized as far as our application for a wheelchair and a wheelchair parking placard. All we have to do now is take the form in to the Alberta Registry office and it will be approved. It may seem like a small thing but it will make our lives so much easier. We can go out to the movies or out to dinner together like we used to do. She also answered our questions about renting a wheelchair ramp for the house and about possibly getting a hospital bed brought in for me if I need it down the road so I can stay at home longer before going to a hospice.
Then I thought about it... it could be tomorrow when George tears another hole in my intestine so I don't know if I have days left or years left. That thought is so scary when I think of all the things that still need to be done to prepare so wetbird
and I sat around talking about what arrangements I want for a service in Vancouver and where I want to have them. I am so glad Lyn was here because one of the places I was thinking about (because it's the right size, right location and has good parking, a kitchen and a bar) is the place where she and pawsitive
had their weding reception and I wasn't sure how she'd feel about having a memorial for me there as well. She said she's fine with it so I think that has been decided.. at least we know the location now, the Danish hall in Cloverdale, which is very close to my Mom's place and not far from a lot of other Darksiders. The Darksiders' dinner will be on a different day at a different venue, of course.
So anyway, we've had a productive day here, lots of decisions made and lots of official type things written down so that I'm a little more prepared for whatever happens. Current Mood: content
|Monday, January 23rd, 2006|
and I made fajitas for dinner last night to celebrate her last night with us (she flew home this morning). It's something we haven't done for a long long time but we remembered how and had a wonderful dinner. Well, it was wonderful until the toaster oven started to shoot flames out of it. Greg had put some taco shells in the toaster oven and then forgot about them. So the toaster oven quickly went outside and got doused to put out the fire. I was in the living room at the time so I smelled the smoke and asked what was going on in the kitchen. It was amusing later on when Greg brought in the rack from the oven where the 2 shells had morphed into what looked like 2 dead bats adhering to the rack.
Greg and I just got back from voting and he's gone out again to get a couple of my prescriptions filled and look for a new water filter for our fridge. Now that my taste buds are recovering I can taste the water again and being the water snob that I am, I decided it needs a new filter. I miss Vancouver water.
I'm feeling a little better each day, more strength, more stamina and food is staying down better. I have to keep taking the medications though, it's so easy to 'forget' to take them when I should. So that's what I'm off to do now. Current Mood: tired
|Saturday, January 21st, 2006|
It's Saturday and I hadn't planned to be up this early but here I am.... I am downstairs in the living room curled up in my chair with the fireplace going. It snowed here over the last 2 days so everything outside is white and bright. I was bored laying there in bed so I decided to go see what CJ was doing and then CJ and I woke up klashville
who is here for the weekend. Then I came downstairs, ate something so I could take my pills and promptly barfed it up again.. not fun.
I had a dream last night about being with the Darksiders. We were looking at the calendar that gerimaple
made for me with pictures from my family (I consider Darksiders family) and I guess that's where the dream came from. We were in our old North Van apartment just hanging out together, laughing and enjoying each other. It seems like such a long time since I've been able to do that. I miss them very much and I hope I'll be able to see them again as a group soon.
In the meantime wetbird
is coming out for a couple of days this week and my father is plotting to bring my nephew out for the day the week after and even my Grandmother and my aunt are coming to see me. It's very touching that they all want to see me and I think it will help them accept the situation. I know I am surrounded by folks who love me, I'm very lucky. Current Mood: touched
|Friday, January 20th, 2006|
I gave myself an injection this morning for the very first time. I didn't feel anything at the time but about 5 minutes later I felt like I was going to throw up... although I didn't.
So this is a major step towards being able to maybe visit my family and friends in Vancouver some time in the near future. I'm getting a little stronger every day, recovering from the chemo treatments so it may be possible to take a little trip maybe. I'm getting a wheelchair from the Red Cross to help with mobility and I'm hoping that I can stay feeling well enough to travel.
I had a surprise visit from my father this week. He felt he should try to come see me as soon as possible and we talked about the decision I made to stop treatments. He said he had questions about why I would reject standard treatments after only 2 rounds, but after we talked about it he understood the pain and the sickness I endured for no reason (because the tumour didn't respond at all). Apparently Janice and Colin feel the same way, asking why I'm not trying alternative therapies either. Maybe that will happen down the road when I'm feeling better but right now I'm still trying to keep food down and get enough nourishment to rebuild my strength. I know the people who have come to visit me understand because they've seen me, the rest will take some time to accept the situation. I agree the situation sucks big time but I can't change that. I've had a good life, I've had the opportunities to do more things than a lot of people twice my age will ever do. I've been very fortunate I think. After all, I had 8 good years as a cancer survivour... it has to end some time.
A friend of mine in Ontario reminded me of something: Life should not be measured in the number of breaths you take, but the number of moments that take your breath away. Current Mood: contemplative
|Saturday, January 14th, 2006|
While I was in the hospital this last time, I had a meeting with Greg, Dr. Chu, and my mother. Dr. Chu had told me all along that she was hesitant to operate on the cancer because of the condition of the tumor. Since I underwent radiation with the original cancer, the tumor, bowel, and other tissues are glued together and it would be impossible to separate them unless the tumor responded "extremely well" to chemotherapy. Dr. Chu confirmed during that meeting that the tumor has not responded to chemo, and in fact the chemo was probably killing me faster than the tumor. This is because, again, of the radiation. The large bones of the pelvis, in a normal person, contain most of the body's marrow, and produce most of the body's red cells, platelets and white cells. My body cannot produce enough to fight the chemo so there is no point in continuing the chemotherapy if all it's going to do is to make me so sick that I have to be in the hospital all the time. My quality of life at home is much better, less painful, and less stressful than in the hospital. So I've decided to work with the palliative home care team to try to maintain my quality of life as long as possible. I can take the short term pain if there is long term gain, but that appears not to be possible.
I know, to some of you, it may seem like giving up, but this way I don't have to be in pain all the time. I don't have to undergo invasive procedures and I can choose hospice care so that Greg can be my partner on this journey rather than my caregiver. Current Mood: scared
|Friday, January 13th, 2006|
I'm home... again.
I went back into hospital on New Year's Eve and just got home this afternoon. I was so sick after the last round of chemo it took almost 2 weeks for my body to recover to the point where they let me come home. My nephrostomy tubes are gone although the site will continue to leak for a few days until the pathways heal over. I'm so glad to have them out of me, they were nothing but a pain in my back.
I have to go call my mother to let her know I made it home. I'll try to catch up on my lj friend's page tonight. Current Mood: tired
|Monday, December 26th, 2005|
I'm home again from the hospital. Greg and Kelli are in the kitchen laying out the nibblies for the open house we're having later today and I'm here in my chair in the living room trying to drink as much water as possible so that my creatinine (or however you spell it) levels will be low enough for me to have my scheduled chemo treatment tomorrow. The doctors are convinced that the Taxol they gave me is responsible for wiping out my platelets (they are 140,000 currently but when I went into the hosital on Sunday night they wereat 15,000) At one point they were down at 7,000 and the doctor started speculating that the cancer was in my bone marrow. They did a bone scan which was interesting but it didn't reveal anything. And now that my blood has recovered they aren't talking about my bone marrow any more and their going ahead with chemo. They are going to take me off the Taxol completely, that's the one that made me break out in itchy hives the last time, in the hopes that I won't suffer too many side effects. The nausea and vomiting have started as well. It just hit me out of the blue one evening in the hospital and I've been throwing up a little ever since then.
My visit with feste
didn't go exactly as planned but because he is such a wonderful guy we managed to make the best of things.I hope it won't be long before I'm able to visit with him for real in a non-hospital environment.
Getting tired now, need a nap before everyone starts to arrive. It looks like Gary and Sam will both be here, haven't heard from the Larsens yet but there's still time. Current Mood: tired
|Friday, December 16th, 2005|
I spent the last 2 days in bed because I wasn't feeling well enough to come downstairs. This morning it took two tries to get down here but I made it because I was determined not to give in. The chemo nurses warned that 7-10 days after treatment I would start to feel flu-like symptoms so I am going to chalk it up to that and try to get on with things.
I'm very excited that I'll get to hug feste
tomorrow morning. I just hope he'll want to hug me, I haven't been able to have a shower in over a week so I'm a bit repulsive at the moment. But I;m beyond caring right now, I just want to start feeling better so I can enjoy his visit.
I was able to finally get through to Manulife about my disability claim. They had stopped my payments because they wanted doctor's records to prove I couldn't go back to work yet. When I talkd to the agent I explained I had started chemo so they have agreed to pay me through to January 22 before they ask for another doctor's report. I tried to explain that it will be at least 3 weeks after my last treatment before I would be reassessed and that my last scheduled chemo dose is Jan 17 (nice way to spend my b'day) but she said she would have to ask for a doctors report by then. sigh. But at least she released my pay for the last month and I was able to pay some bills with it. Current Mood: sleepy
|Tuesday, December 13th, 2005|
Today I'm rejoicing. It seems as though the ET nurses have found a system that might work for me. It's feeling very solid and stable and no leaks yet. It's a much larger plastic/rubbery wafer that lays flat on my skin so it, in theory, should be flexible enough to move with me and prevent the gaps that the rigid ones always developed. I won't know for sure until I've slept in it of course, but for right now I'm clean and dry so I'm rejoicing.
I'm also rejoicing my husband. Greg has given up so much to take care of me and I can't thank him enough for all the million little things he does for me during the day. I'm also rejoicing my friends for everything they are doing for me. From sending hugs to cards and e-mails or picking up the phone just to say hello I am super grateful that they are thinking of me and wishing me all the best.
The morphine is making me sleepy so I'm going to go have a nap while Greg is out at London Drugs. Nitey nite everyone.
*HUGS*! Current Mood: high
Well, it's happening. The next side effect is taking over, I've lost the ability to taste food. Last night we had Swiss Chalet and I never liked their sauce but I thought I'd try it to see what it tasted like with my diminished capacity. I still didn;t like it. This morning I took one bite of a bagel Greg so thoughtfully toasted for me and it was like biting into a foam cushion. Not much fun. I decided to try orange juice and even that tastes watery and bland. My tongue has turned white, too. I don't know if that's related.
Anyway, the home care nurse will be here soon to take care of my daily stuff, then Dad is stopping by for a short visit on his way back to the airport. Then I have an appointment with the ET nurses at Foothills Hospital at 1:30. I went through the entire supply of ostomy stuff they ordered for me this weekend. I think it was supposed to be enough to last the month. They are going to have to come up with something to help me or I'm going to go right out of my mind.
My fingers and toes are still numb and sore but Greg found a website that says massage is good for this condition so I've been begging footrubs from him 2 and 3 times a day. It feels awesome and I think it helps. The next side effect I'm expecting is for all my hair to fall out. Oh the joys of putting poisons in your body. It's been, shall we say, interesting. Current Mood: drained
|Monday, December 12th, 2005|
I had an interesting weekend. Kelli arrived late on Friday night, her flight got in after 10pm so I was already in bed when she and Greg got back from the airport. She changed into her jammies and came in to sit on the edge of my bed to talk. I begged her to rub my feet so she grabbed the lotion and did an excellent job on my feet. Ever since the numbness and tingling started in my hands and feet I've been craving foot rubs. It makes me wish pawsitive
was here because he gives the best foot rubs in the world.
Anyway, by the moring the pain in my hands and feet had increased to the point where it had spread up my arms and past my ankles. I couldn't move very well and my ostomy was leaking and the skin around it was bleeding. At about 6:30am I asked Greg to take me to the hospital. Kelli and Greg and I got to emergency and before too long they had an IV in my arm and had administered some morphine for my pain. After that I didn't really care what happened. Morphine is my best friend. We got out of there around noon with a bottle of 12 morphine pills for me to take home and a fresh dry ostomy site. I felt a million times better.
That night we went for a drive to look at Christmas lights, then I took more morphine so I could get some sleep. It worked very well and I was good til morning. Yesterday during the day I had Greg'g brothers over for a visit. They only stayed a couple of hours but that was more than enough for me. I like them and Kathleen, Greg's older brother's wife is always sweet to me. She brought some of her Christmas baking. But I was tired so I sat in the living room while they played cards for a while. Then we visited for a bit before they left.
Last night was the Survivour finale so Kelli Greg and I watched that until Kelli had to go to the airport for her flight home. She'll be back on Christmas Day so I know I'll see her in a few weeks but she has no idea how great it is to have her here. She somehow manages to hold back all the blackness and depression that I'm facing and helps me get through the days. She has been great, I wish she was closer. I'm so glad she's staying through New Year's and she'll be here for my next chemo treatment on the 27th. She is very comforting.
My father arrived today, he's actually out picking up Swiss Chalet for dinner right now. He's another one that would do anything he could do help me get through all this. The problem is he doesn't know quite what the right thing is. But that's OK, just sitting and talking helps too. Mmmmm, chicken dinner is coming. Current Mood: hungry