When someone we love is very ill, we get thrown into uncharted territory. We leave behind everything familiar and move into the unknown. We are called into a realm of not knowing. I like to call it the bubble.
There is a film between us and the rest of the world. We can watch our lives go on but there is a distinct force field that hold us just out of reach. This uncertainty is a difficult condition for the human mind and spirit. It doesn't matter how many tragic events happen in your life, all have different circumstances all of them cause the "not knowing, which force us into the bubble.
As the bubble offers seclusion, it also offers protection.
Once the bubble bursts, we move back to a state of knowing and the flood of emotion hits like a ton of bricks. Every thing becomes clear and we are forced back into life. Ready or not.
I am still having a hard time believing she is gone. We would talk on the phone a few times each day and now when ever the phone rings, I think it is her. We used to watch a show on TV, me at my house and she at hers, but we were on the phone chatting like we were sitting in the same room. Sometimes we would talk for hours. I feel like I have been punched when I remember she is not here anymore.
I had to go to her house and pick out some clothes for her to be cremated in. (yes, they dress them now) It was an exercise in desperation. I picked out a beautiful outfit that I know she loved. It was her "Vegas Dress" It was a white summer dress,. I matched it with a green blazer. I could not find the right shoes, She only had winter shoes in her closet, and we searched high and low but could not find her summer shoes. There was no way I was going to put black chunky shoes on with a white dress. I felt panic. And then I saw the multi colored fuzzy slippers she wore everyday for the last few months of her life. Decision made. Honestly, shoes would not have gone on her feet anyway. The slippers were perfect. I grabbed Elvis, her stuffed rat and a picture of her and the kids and delivered it all to the funeral home.
I am fairly sure those folks at the funeral home think I am nuts. She wrote on the cremation request that Mishelle was to hold the picture in one hand and to have Elvis in the other. She would have loved that.
And I have to say that I bust out laughing when Bryan brought home the page of obits from the paper. All these serious pictures .... then Mishelles with the glasses. It could not be more perfect.
Anyway, I just thought I would mention the bubble thing. It's not a bad thing, it's just life becoming normal again, although it will never be the same normal as it was before.
Tuesday, April 6, 2010
Monday, April 5, 2010
Obituary and date of service
I have put the obituary that I wrote in here in case anyone doesn't get the paper on Tuesday. Please pass this to all the people who may want to know. The details of the service are in the obit. There will also be a wine and nibbles and a walk through and celebration of Mishelles life immediately after the service. That will be held at Park 96 in Parkland. I will have a hand out at the service with directions. The new picture is the one I put in the obituary. I am sure you will all totally agree that it is totally her and so very appropriate.
Mishelle Anita Boychuk
August 15, 1957 – April 3, 2010
August 15, 1957 – April 3, 2010
Mishelle let go of her extremely stubborn attitude on April 2, 2010, which allowed her to move on to her next life on April 3, 2010. When cancer attempted to constrict and smother her, the hope in her heart punched a hole in it and let the light of a pure soul shine through.
She was loved by many and showed us all what it is like to be super-human, as she faced all her challenges with tenacity and determination. She passionately loved her family, friends and dogs. Mishelle loved to laugh at herself, and others, and brought that joy to those around her.
Mishelle is survived by her children, Jessica and Christopher Hovagimian, her mother, Heidi Boychuk; brother Riccardo Boychuk (wife Karin) niece Sarah, nephew Brandon; sister Renee Boychuk (Husband Bryan Hetlinger) niece Madalyn and nephew Jack. She was predeceased by her father, James Roy Boychuk.
A special thank you to all her amazing friends who stood by her side throughout her long illness.
A celebration of her life will be held at McInnis & Holloway – Fish Creek Chapel, on Saturday, April 24, 2010 at 11:00 am.
In lieu of flowers, please donate generously to Foothills Country Hospice Society, Box 274, Okotoks, AB T1S 1A5.
Saturday, April 3, 2010
Forever Young
7:30 am Saturday April 3, 2010 Mishelley took her last breath and her incredibly strong heart beat for a final time. She was gently guided to a better place by family,friend, amazing nurses and the angel on guard. It was a tremendously painful and touching moment that we all had the privilege to share. Her final release from so much pain, to let go knowing she battled so hard to to get to here, to being forever young.
Her children stood strong and loving by her side, giving her permission to move to the next life, assuring her that the light of her life would guide them in theirs.
And as for me, my heart is broken completely in half. I have a space, now that will always belong to her and her memories. For now I will let go and say goodbye until we meet again..... I told her to have a glass of wine, some nachos and a scrabble board ready.
Please stay posted to the blog. I will post more information on the when and where of her Memorial service. I look forward to putting faces to those of you who responded via blog and e-mail and phone calls.
I would like to thank all the people who followed this blog and all the wonderful comments you posted here. I read every one of them to Mishelle and I know she felt all the love and caring your words captured.
Renee
Her children stood strong and loving by her side, giving her permission to move to the next life, assuring her that the light of her life would guide them in theirs.
And as for me, my heart is broken completely in half. I have a space, now that will always belong to her and her memories. For now I will let go and say goodbye until we meet again..... I told her to have a glass of wine, some nachos and a scrabble board ready.
Please stay posted to the blog. I will post more information on the when and where of her Memorial service. I look forward to putting faces to those of you who responded via blog and e-mail and phone calls.
I would like to thank all the people who followed this blog and all the wonderful comments you posted here. I read every one of them to Mishelle and I know she felt all the love and caring your words captured.
Renee
Thursday, April 1, 2010
Guardian Angel
There is a very strong male presence in the room now. I can feel all sorts of energy coming and going around here, but this one isn't leaving. He stands guard by her bed. The energy I feel is gentle, calm and protective, I believe it is her angel.
Another sleepless night. Mishelles body is starting the process of letting go. She is experiencing much longer periods of apnea (moments of not breathing) These periods have been getting more frequent as time goes on. Her pulse is running at about 130 bpm. Her oxygen levels are hovering in the low 80's. (92 and above are normal) Her respiration's are coming from the mid chest. These will move higher and higher as the process progresses. The night nurse informed me that this is the beginning. I gathered the change must have been significant as the Doctor came at 9:30 last night to check on her. So, I basically slept with one eye open and watched her breathing.
I am going to go home tonight to sleep. Chris is going to stay. I hope all goes well through the night.
Another sleepless night. Mishelles body is starting the process of letting go. She is experiencing much longer periods of apnea (moments of not breathing) These periods have been getting more frequent as time goes on. Her pulse is running at about 130 bpm. Her oxygen levels are hovering in the low 80's. (92 and above are normal) Her respiration's are coming from the mid chest. These will move higher and higher as the process progresses. The night nurse informed me that this is the beginning. I gathered the change must have been significant as the Doctor came at 9:30 last night to check on her. So, I basically slept with one eye open and watched her breathing.
I am going to go home tonight to sleep. Chris is going to stay. I hope all goes well through the night.
Wednesday, March 31, 2010
The long and the short of it.
Sometimes our greatest fears become a reality. A sad realization comes to light and we wonder if it could really be true.
Yesterday someone asked me what I did all day while I am here with Mishelle.
I think a lot of people might ask that question. When people come by, she just lays there, if they speak to her she will respond by lifting her hand or by giving the queen wave.
Imagine if you were lying in a bed so overcome by weakness and dehydration, your body mass reduced to skin and bones and you have no way to move. Even holding your eye's open is extremely difficult. In spite of all this you are completely aware of your surroundings. Your minds is functioning and listening. Now imagine people coming and going they stop to stare at you they may or may not say hello. They may talk about you like your not there, often saying things without realizing you can hear them. You lay there waiting for someone to roll you over or to ask if you are in pain. The drugs they are giving you are causing you to see bugs crawling all over and you need the other drugs to make the bugs go away. Your to weak to push your button to get the help you need. So you lay there feeling the passage of time and feeling like it's all going in slow motion.
To look at mishelle, you might think she is sleeping. I would call her state semi conscious. I know she is awake most of the time because when I ask her a question she responds immediately.
As I have said before, the nurses and staff here are outstanding but they also have many other people to care for. What I do all day is work on my book and act like we are sitting together having coffee. I check every 1/2 hour that she is not hallucinating to badly or that she is not in pain. She needs her legs adjusted often, she is getting sore spots on her heels. I read to her and tell her about my plans and I talk to her about all my problems and worries. I ask her for advice and she gives me the thumbs up for yes and down for no. She is still my big sister after all.
So in answer to that question, that is what I do all day.
It is what I will continue to do until I am no longer needed. In the big picture, it's a very small chunk in time. Mishelley has been through so very much, and being the fighter she is, has done much of it quietly and alone. I have no other gift to give but my time. It's my my way of repaying her for the hours and hours she sat with me over the years. Listening to all my troubles and handing out the best advice and for always being right about how things would turn out.
I am finding it harder and harder not to cry, I wish that this journey would come to an end for her. That damn stubbornness is still going strong. One of the nurses here called her an enigma. Indeed!
Yesterday someone asked me what I did all day while I am here with Mishelle.
I think a lot of people might ask that question. When people come by, she just lays there, if they speak to her she will respond by lifting her hand or by giving the queen wave.
Imagine if you were lying in a bed so overcome by weakness and dehydration, your body mass reduced to skin and bones and you have no way to move. Even holding your eye's open is extremely difficult. In spite of all this you are completely aware of your surroundings. Your minds is functioning and listening. Now imagine people coming and going they stop to stare at you they may or may not say hello. They may talk about you like your not there, often saying things without realizing you can hear them. You lay there waiting for someone to roll you over or to ask if you are in pain. The drugs they are giving you are causing you to see bugs crawling all over and you need the other drugs to make the bugs go away. Your to weak to push your button to get the help you need. So you lay there feeling the passage of time and feeling like it's all going in slow motion.
To look at mishelle, you might think she is sleeping. I would call her state semi conscious. I know she is awake most of the time because when I ask her a question she responds immediately.
As I have said before, the nurses and staff here are outstanding but they also have many other people to care for. What I do all day is work on my book and act like we are sitting together having coffee. I check every 1/2 hour that she is not hallucinating to badly or that she is not in pain. She needs her legs adjusted often, she is getting sore spots on her heels. I read to her and tell her about my plans and I talk to her about all my problems and worries. I ask her for advice and she gives me the thumbs up for yes and down for no. She is still my big sister after all.
So in answer to that question, that is what I do all day.
It is what I will continue to do until I am no longer needed. In the big picture, it's a very small chunk in time. Mishelley has been through so very much, and being the fighter she is, has done much of it quietly and alone. I have no other gift to give but my time. It's my my way of repaying her for the hours and hours she sat with me over the years. Listening to all my troubles and handing out the best advice and for always being right about how things would turn out.
I am finding it harder and harder not to cry, I wish that this journey would come to an end for her. That damn stubbornness is still going strong. One of the nurses here called her an enigma. Indeed!
Monday, March 29, 2010
The wind, the moon and the stars
The moon is full, the wind is a blowing and Mishelley is seeing stars. Today we had the window wide open in the room. It was awesome! Mishelle gets so hot and it is so warm in the building, it felt wonderful.
We had a long night last night. They were worried that Mishelle may have a toxic reaction to the Pain meds because of the dehydration so they cut back on it. This resulted in her needing more break through meds. Also because she has some hot spots on her back side they need to reposition her many times each night. She has a buzzer around her neck and just needs to press the button. However, she would snap her fingers and try to call me to get me to get up and ring her buzzer. This resulted in me getting about 3 hours of sleep. I decided to do a little looky lou on the net about dehydration. It seems that this is a very comfortable way to go and people actually feel less pain when dehydrated.
hmmmmm............ She is very weak now and needs help to move her legs. She does not like to be touched. It's very hard for her to speak. She uses hand signals and we go through the list of things we know may need to be changed to make her comfortable. That's my girl. she can't talk but she is still bossing me around with her hand signals.
We had a very quiet day again today. It was nice. Tonight she opened her eye's for about 10 minutes. I sat beside her in the wheelchair and she stared into my eye's. I felt like she wanted to talk but couldn't.. so I did all the talking. I told her that the moon was full and beautiful and if I could, I would roll her outside to look at it. It had rained a bit and the wind blew the smell of fresh rain on dry grass into the room, it smelled good. I asked her if she could smell it and she nodded yes and held up a finger, I took that as a good thing. I asked her if she was in pain, she nodded no. I asked her if she was hallucinating still,(she was last night) she nodded yes. I asked if it bothered her, she nodded no. I asked what she was seeing. She whispered "stars". I asked her if she was scared, she nodded no and made "a little" sign with her fingers. I promised her I would get her through this, we would get through it together. She nodded yes. Then she closed her eye's and relaxed.
I am so grateful for these small moments, I don't know if I will get another. As hard as it is to sit here and watch her for hours on end, these moments make it all worth it.
So now I am going out to look at the moon and feel the cool wind blow the stress of the day away.
We had a long night last night. They were worried that Mishelle may have a toxic reaction to the Pain meds because of the dehydration so they cut back on it. This resulted in her needing more break through meds. Also because she has some hot spots on her back side they need to reposition her many times each night. She has a buzzer around her neck and just needs to press the button. However, she would snap her fingers and try to call me to get me to get up and ring her buzzer. This resulted in me getting about 3 hours of sleep. I decided to do a little looky lou on the net about dehydration. It seems that this is a very comfortable way to go and people actually feel less pain when dehydrated.
hmmmmm............ She is very weak now and needs help to move her legs. She does not like to be touched. It's very hard for her to speak. She uses hand signals and we go through the list of things we know may need to be changed to make her comfortable. That's my girl. she can't talk but she is still bossing me around with her hand signals.
We had a very quiet day again today. It was nice. Tonight she opened her eye's for about 10 minutes. I sat beside her in the wheelchair and she stared into my eye's. I felt like she wanted to talk but couldn't.. so I did all the talking. I told her that the moon was full and beautiful and if I could, I would roll her outside to look at it. It had rained a bit and the wind blew the smell of fresh rain on dry grass into the room, it smelled good. I asked her if she could smell it and she nodded yes and held up a finger, I took that as a good thing. I asked her if she was in pain, she nodded no. I asked her if she was hallucinating still,(she was last night) she nodded yes. I asked if it bothered her, she nodded no. I asked what she was seeing. She whispered "stars". I asked her if she was scared, she nodded no and made "a little" sign with her fingers. I promised her I would get her through this, we would get through it together. She nodded yes. Then she closed her eye's and relaxed.
I am so grateful for these small moments, I don't know if I will get another. As hard as it is to sit here and watch her for hours on end, these moments make it all worth it.
So now I am going out to look at the moon and feel the cool wind blow the stress of the day away.
Sunday, March 28, 2010
Me, Mishelle and Bob
It's about 7:00 pm Sunday and I am getting sick of the TV. I figured it was time to toss it up a little. They have a great little stereo system in every room. I popped in a Bob Marley disc and she has smiled a few times. SUCCESS!! I told her to think of hanging on a hot sunny beach in Jamaica.
It's been a very quiet day today. Just Mom and Bryan visiting. Chris, Jess and Richard were here this morning, Chris slept on the couch last night.
I am so hoping to have a quiet night with just the two of us. We have not had much time alone. I have been reading to her a little bit. She is having some pain in her stomach tonight, so the furrowed brow is back once and a while. It worries me a little. I am sure it is the revenge of the 3 freezes she insisted on this morning. Unfortunately, what goes in must come out. I know this but how do you say no? She is so hot and dehydrated. It must feel wonderful to have that cool icy liquid. She really wanted a forth but I had to tell her no!
I want to cry so bad, but I won't. I sit here thinking about our life as sisters. It makes me laugh when I think about some of the funny things we did when we were kids. I remember sneaking up behind her while she was playing a little keyboard we had. She was playing like she was Beethoven. I poked her in the back and she reflexively threw me across the room. She was so mad. We used to sleep in the same room and she is a notorious sleep talker. Wow, she used to babble up a storm. She would sit straight up, eyes open, arms flailing. Then we moved to Parkland and she got her own room on the second floor. Mine was right beside hers and I just wanted everything she had. She was almost 6 years older and looking back, I am sure I was a huge pain in her butt. She put a lock on her door to keep me out. I soon discovered that if I went out my window and across the roof, I could pop her window open and help myself to all her stuff. It was a good plan. Then one night she locked herself in her room to wrap Christmas presents. She had taken some pretty big bags in there. Curiosity got the better of me so I climbed out my window and had my face pressed against her window. I felt totally evil and thought I was pretty smart. She looked up and I thought she was going to have a heart attack. She screamed so loud, I am sure they heard her a mile away. It was dark and she didn't register that it was me. She almost knocked her door off the hinges trying to get out. Not only did I get in huge trouble but I was busted big time. She shoved a broom stick in her window handle after that. She also swooped in and saved me so many times from getting in trouble.
But back to reality, now we can sit here together quietly and just enjoy each others presence. Her being peaceful and me watching her breathe.
What will I do with out her .......
It's been a very quiet day today. Just Mom and Bryan visiting. Chris, Jess and Richard were here this morning, Chris slept on the couch last night.
I am so hoping to have a quiet night with just the two of us. We have not had much time alone. I have been reading to her a little bit. She is having some pain in her stomach tonight, so the furrowed brow is back once and a while. It worries me a little. I am sure it is the revenge of the 3 freezes she insisted on this morning. Unfortunately, what goes in must come out. I know this but how do you say no? She is so hot and dehydrated. It must feel wonderful to have that cool icy liquid. She really wanted a forth but I had to tell her no!
I want to cry so bad, but I won't. I sit here thinking about our life as sisters. It makes me laugh when I think about some of the funny things we did when we were kids. I remember sneaking up behind her while she was playing a little keyboard we had. She was playing like she was Beethoven. I poked her in the back and she reflexively threw me across the room. She was so mad. We used to sleep in the same room and she is a notorious sleep talker. Wow, she used to babble up a storm. She would sit straight up, eyes open, arms flailing. Then we moved to Parkland and she got her own room on the second floor. Mine was right beside hers and I just wanted everything she had. She was almost 6 years older and looking back, I am sure I was a huge pain in her butt. She put a lock on her door to keep me out. I soon discovered that if I went out my window and across the roof, I could pop her window open and help myself to all her stuff. It was a good plan. Then one night she locked herself in her room to wrap Christmas presents. She had taken some pretty big bags in there. Curiosity got the better of me so I climbed out my window and had my face pressed against her window. I felt totally evil and thought I was pretty smart. She looked up and I thought she was going to have a heart attack. She screamed so loud, I am sure they heard her a mile away. It was dark and she didn't register that it was me. She almost knocked her door off the hinges trying to get out. Not only did I get in huge trouble but I was busted big time. She shoved a broom stick in her window handle after that. She also swooped in and saved me so many times from getting in trouble.
But back to reality, now we can sit here together quietly and just enjoy each others presence. Her being peaceful and me watching her breathe.
What will I do with out her .......
Saturday, March 27, 2010
Saturday night fever
Saturday afternoon:
Christopher and I are having dinner with Mishelle tonight. We are eating Edo and she is sleeping. We have scarcely seen the whites of her eyes for 2 days now. I brought in a few pictures of her yesterday to hang on her message board. One is a baby picture and one is when she was about 30. She looks so beautiful. I just wanted the nurses to see how she looked before all this. They were thrilled to see it and said that it is always nice to see people looking healthy.
The fact that she is not responding to us makes me wonder what is going on in her mind. We know she can hear us because when we talk to her she responds by shaking her head or lifting her hand. I keep expecting her to open her eyes and ask to get out of bed and into her chair. She looks very peaceful, gone is the furrow in her brow. I could always tell when she was in pain before, I don't see it now. Her face looks soft and serene. If this is how it's going to look until she passes, I would say that we have achieved a miracle. However .... it aint over until the skinny lady sings.
Sunday afternoon:
This is where it gets hard. We are amazed at how good Mishelles complexion looks. However, lurking on the under side is some very sore spots. She is so thin that any place that there is pressure, very hot red patches are appearing. Because she is so still (and prefers to be on her back)she doesn't indicate that she has any pain. It was discovered last night that she had a few spots of major concern and the nurses on that shift were amazing. They washed her down and got some big fuzzy sheep skins to put under her. They spent almost 20 minutes getting her positioned so she was comfortable. She seems to be a little more lucid today and is asking for Popsicles. She is very very weak but I still see her in there. We see big changes every day.
This place has quite an interesting energy. If you observed it on a spiritual level I imagine it would look like an airport, lots of taking off but no landings. Being a person who is, lets say sensitive to spirit energy. I haven't physically seen many of the other patients but I feel like they all come to visit before they move on.
On the subject of the hospice....
I believe that angels walk among us. If not angels then highly evolved souls. These would be the woman who work in the hospice. Daily, they face the thing most people fear the most. Death. They approach their work in a giving and completely fearless manor. You need a superior sense of being present to do this work. I have seen how much care is required by the dying and can only imagine how difficult some situations may be or could become. Our automatic reaction might be to turn tail and run. You would have to live in the moment to get through some of these tough circumstances. This ability can be achieved by anyone, but to do it consistently every day takes a very special someone. When I come here to the hospice, I feel safe, tightly embraced and cushioned by care and compassion.
The strength these women exude is humbling and I am so grateful for them.
We have been here 8 days as of today.
Christopher and I are having dinner with Mishelle tonight. We are eating Edo and she is sleeping. We have scarcely seen the whites of her eyes for 2 days now. I brought in a few pictures of her yesterday to hang on her message board. One is a baby picture and one is when she was about 30. She looks so beautiful. I just wanted the nurses to see how she looked before all this. They were thrilled to see it and said that it is always nice to see people looking healthy.
The fact that she is not responding to us makes me wonder what is going on in her mind. We know she can hear us because when we talk to her she responds by shaking her head or lifting her hand. I keep expecting her to open her eyes and ask to get out of bed and into her chair. She looks very peaceful, gone is the furrow in her brow. I could always tell when she was in pain before, I don't see it now. Her face looks soft and serene. If this is how it's going to look until she passes, I would say that we have achieved a miracle. However .... it aint over until the skinny lady sings.
Sunday afternoon:
This is where it gets hard. We are amazed at how good Mishelles complexion looks. However, lurking on the under side is some very sore spots. She is so thin that any place that there is pressure, very hot red patches are appearing. Because she is so still (and prefers to be on her back)she doesn't indicate that she has any pain. It was discovered last night that she had a few spots of major concern and the nurses on that shift were amazing. They washed her down and got some big fuzzy sheep skins to put under her. They spent almost 20 minutes getting her positioned so she was comfortable. She seems to be a little more lucid today and is asking for Popsicles. She is very very weak but I still see her in there. We see big changes every day.
This place has quite an interesting energy. If you observed it on a spiritual level I imagine it would look like an airport, lots of taking off but no landings. Being a person who is, lets say sensitive to spirit energy. I haven't physically seen many of the other patients but I feel like they all come to visit before they move on.
On the subject of the hospice....
I believe that angels walk among us. If not angels then highly evolved souls. These would be the woman who work in the hospice. Daily, they face the thing most people fear the most. Death. They approach their work in a giving and completely fearless manor. You need a superior sense of being present to do this work. I have seen how much care is required by the dying and can only imagine how difficult some situations may be or could become. Our automatic reaction might be to turn tail and run. You would have to live in the moment to get through some of these tough circumstances. This ability can be achieved by anyone, but to do it consistently every day takes a very special someone. When I come here to the hospice, I feel safe, tightly embraced and cushioned by care and compassion.
The strength these women exude is humbling and I am so grateful for them.
We have been here 8 days as of today.
Thursday, March 25, 2010
Another step towards the light
I guess I should learn how to spell. Well, it has become apparent that we are stepping a little closer to the light. Last night and this afternoon were hard for Mishelle. Her bowel is now completely obstructed. She can no longer take any medication by mouth and can only take fluids by the swish and spit method. The implications of this are huge. But in typical Mishelle style, she insisted on swishing and spitting Coke at one point this afternoon! (they never said what the liquid should be)
The child like innocence I was trying to describe in Mishelle .. I now see it for what it is. It's her true nature shining through her dissolving body. She has shed all the things that the rest of us hang onto. Status, self pity, envy, competition, resentment and anger. She has no fear and has let go of opinions, concepts and ideas, she has returned to her true self.
I wonder what kind of mind and heart can stay so strong and open in the midst of so much chaos. I guess it's a mind that goes back to basic survival mode.
I see that this is part of the process of dying. Your mind goes methodically goes through what it must keep and what it must let go of. For her, and all the physical suffering she has endured. I am amazed that she chose this path. No anger, Just peace, contentment and happiness.
I have taken the night off to get a good nights sleep and eat food other than twizzlers and coffee. It's Jessies turn to wrestle the couch tonight. We have started to tag team on the sleep overs. Thank you to everyone who has brought us food, we totally appreciate it.
That's it for tonight
The child like innocence I was trying to describe in Mishelle .. I now see it for what it is. It's her true nature shining through her dissolving body. She has shed all the things that the rest of us hang onto. Status, self pity, envy, competition, resentment and anger. She has no fear and has let go of opinions, concepts and ideas, she has returned to her true self.
I wonder what kind of mind and heart can stay so strong and open in the midst of so much chaos. I guess it's a mind that goes back to basic survival mode.
I see that this is part of the process of dying. Your mind goes methodically goes through what it must keep and what it must let go of. For her, and all the physical suffering she has endured. I am amazed that she chose this path. No anger, Just peace, contentment and happiness.
I have taken the night off to get a good nights sleep and eat food other than twizzlers and coffee. It's Jessies turn to wrestle the couch tonight. We have started to tag team on the sleep overs. Thank you to everyone who has brought us food, we totally appreciate it.
That's it for tonight
Wednesday, March 24, 2010
New Picture!
My last comment on the picture was for one that was posted before. I will try to figure out how to post more than one picture for those of you who missed it.
Another misty day
It is a misty day out here today. Mishelle is having a pretty good day today. She had a fabulous bath this morning and her hair is all fluffy, she looks like a baby bird. She continues to keep her sense of humor. That is about all there is to report today.
Tuesday, March 23, 2010
We over here love the picture!
Hello everyone,
No! We did not prop Mishelle up in the chair and dress her up to take her picture. She actually, (during on of her reality vessel moments) asked to have the picture put on the blog. We, in our camp are LOAO. It epitomizes Mishelle and her defiance to this disease she has. (take note of the right hand). We love it and it will always make us laugh.
No! We did not prop Mishelle up in the chair and dress her up to take her picture. She actually, (during on of her reality vessel moments) asked to have the picture put on the blog. We, in our camp are LOAO. It epitomizes Mishelle and her defiance to this disease she has. (take note of the right hand). We love it and it will always make us laugh.
Another sleepless night
You know, I totally don't mind sleeping here with Mishelle. However, she scares me a little with all the sounds she makes in the night. I find myself sleeping with one eye open to see if she is still breathing.
It's so quiet here. The hospital was brutal because ever two minutes you would hear the announcement on who needed a break through or who was stranded in their bathroom. Shelly slept from 10:00 pm until 2:00 today and has some confusion. This is due to the fact that she has only had about 4 ounces of water every day. I see her becoming a little weaker each day.
Today Mom, Jessie and I are camped out in her room. Mom and I took her for a long walk around the facility and parked her chair facing the amazing mountain scene. It's a beautiful sunny day and the fresh air felt good. She is so appreciative of every little thing we do.
She twitches a lot when she sleeps and I think that her mind is very busy now. She tells me that she lives in 2 vessels right now. One is a world of imagination and wonder, the other is reality. She can tell the difference between the two and tells me which one she is in occasionally.
She is so stinking cute some times. And others she seems like she is going to try to stand up without warning and it scare the hell out of me.
She still doesn't want any company other then a few family members. This is part of the process of turning inward and letting go. Soon she will withdraw from those of us who are the closest to her as well. Selfishly, I want to keep all these moment for myself. I feel like a mother bear who wants to protect her, because she can't protect herself. I am, for all intensive purposes, the gate keeper.
I would also like to take a moment to thank a few people. There are many that have come in the last few days and I feel like I haven't or didn't express enough appreciation for your visits.
Cathy P for the kick ass foot rubs - (Mishelle loves them)
Cheryl for taking all my crazy phone calls, your sound advice and super support for Mishelle and me.
Sandi - YOU ARE MY ROCK!!
Doc and Roe? and their sweet little man for bringing laughter on a day when we really needed it.
Karen T. For the magnificent flower arrangement and beautiful note. Mishelle was so excited to see it. (I don't know if you saw the flowers Karen, but they are very beautiful, and she loved it) Her comment was that She was glad she had made an impression on someone.
Brad B. You give great hugs!! I know it was a hug from the whole family and we totally appreciate that. I am sorry you were not able to see her, but thank you for coming anyway.
Carol and Danny for bringing the best entertainment us girls have had for a long while. Shelly actually sat in her wheel chair last night and laughed out loud. The hydrangea is beautiful and one of Mishelles favorite flowers.
Kathi, it was great to see your comment on the blog. I told Mishelle about your note and she was happy to hear from you. And yes, you are right, life is to short and we should do and say the things we want to when given the opportunity.
I am sure I may have missed a few people and I am not including family in there because you know you are loved and appreciated.
We are planning a nice quiet evening of American Idol (Mishelles all time favorite show) and perhaps a movie on the fabulous flat screen for Sandi, Jessie and I.
Until Tomorrow
It's so quiet here. The hospital was brutal because ever two minutes you would hear the announcement on who needed a break through or who was stranded in their bathroom. Shelly slept from 10:00 pm until 2:00 today and has some confusion. This is due to the fact that she has only had about 4 ounces of water every day. I see her becoming a little weaker each day.
Today Mom, Jessie and I are camped out in her room. Mom and I took her for a long walk around the facility and parked her chair facing the amazing mountain scene. It's a beautiful sunny day and the fresh air felt good. She is so appreciative of every little thing we do.
She twitches a lot when she sleeps and I think that her mind is very busy now. She tells me that she lives in 2 vessels right now. One is a world of imagination and wonder, the other is reality. She can tell the difference between the two and tells me which one she is in occasionally.
She is so stinking cute some times. And others she seems like she is going to try to stand up without warning and it scare the hell out of me.
She still doesn't want any company other then a few family members. This is part of the process of turning inward and letting go. Soon she will withdraw from those of us who are the closest to her as well. Selfishly, I want to keep all these moment for myself. I feel like a mother bear who wants to protect her, because she can't protect herself. I am, for all intensive purposes, the gate keeper.
I would also like to take a moment to thank a few people. There are many that have come in the last few days and I feel like I haven't or didn't express enough appreciation for your visits.
Cathy P for the kick ass foot rubs - (Mishelle loves them)
Cheryl for taking all my crazy phone calls, your sound advice and super support for Mishelle and me.
Sandi - YOU ARE MY ROCK!!
Doc and Roe? and their sweet little man for bringing laughter on a day when we really needed it.
Karen T. For the magnificent flower arrangement and beautiful note. Mishelle was so excited to see it. (I don't know if you saw the flowers Karen, but they are very beautiful, and she loved it) Her comment was that She was glad she had made an impression on someone.
Brad B. You give great hugs!! I know it was a hug from the whole family and we totally appreciate that. I am sorry you were not able to see her, but thank you for coming anyway.
Carol and Danny for bringing the best entertainment us girls have had for a long while. Shelly actually sat in her wheel chair last night and laughed out loud. The hydrangea is beautiful and one of Mishelles favorite flowers.
Kathi, it was great to see your comment on the blog. I told Mishelle about your note and she was happy to hear from you. And yes, you are right, life is to short and we should do and say the things we want to when given the opportunity.
I am sure I may have missed a few people and I am not including family in there because you know you are loved and appreciated.
We are planning a nice quiet evening of American Idol (Mishelles all time favorite show) and perhaps a movie on the fabulous flat screen for Sandi, Jessie and I.
Until Tomorrow
Monday, March 22, 2010
Get us off this damned rollercoaster
Hello everyone!
Well, shit .... you just never know what a day will bring. Saturday Mishelle had a great day, we played scrabble and went outside and just enjoyed the day. All seemed well so we all went home and left Shelly in very capable hands of the wonderful ladies at the hospice.
Sunday morning, I decided to bring the kids in to check out the place and as we came to her room, I knew much had changed over night. I saw the oxegen tank sitting like a beacon at the door. Mishelle had spent a very bad 4 hours and was now completely catatonic. They had her propped up in a mountain of pillows and we were all scared this was it. She had many visitors over the day and barely acknowledged anyone. In light of this new developement, I stayed the night. I had to keep checking to see if she was still breathing.
But, in true Mishelle style, She sat up at 4:00 am (which is amazing, cause she can't sit up alone) and told me she wanted a rock star. I said "you want a what?" She said "a break star". What she actually meant was a break through pain med. So typical, she is near death one day and sitting up in her wheel chair the next smoking a cigarette.
So, it is now Monday and she woke up this morning thinking that it was sunday night and that desperate housewives would be coming on soon.
Today she has had about 25 visitors and it has totally knocked her out. She took a huge leap this morning after Richard came to visit her. She was chatting to us about how she wants things to look when she is gone. She is happy and we actually laughed out loud a few times. We decided on a secret signal, a way that she will be able to tell me she is still here. It's a very foggy, misty day out here. She asked me to bundle her up and take for a ride around the property. So we did ... twice. After 10 months of holding her hand and my breath and never letting her see me cry, I finally got to rest my head in her lap and cry and tell her how I felt. It's been tough to relax because she has been fighting so hard, right up until this very moment. We have all been longing to have a loving conversation with her. She is totally sorting her emotion laundry and getting all her ducks in a row.
Now, with that being said, she has asked that at this time she only wants to have her family with her. She was so very happy to have all the visitors today but it totally exhausted her. If anyone wants to come out, please call me first. If you come to the hospice, you may be turned away. Please don't take it personally, these are her wishes.
I am updating this from her room and will update if opportunity arises. I will be camped out here from now on and if Jessica brings her laptop again, I will update then.
Mishelle sends her love to everyone.
Well, shit .... you just never know what a day will bring. Saturday Mishelle had a great day, we played scrabble and went outside and just enjoyed the day. All seemed well so we all went home and left Shelly in very capable hands of the wonderful ladies at the hospice.
Sunday morning, I decided to bring the kids in to check out the place and as we came to her room, I knew much had changed over night. I saw the oxegen tank sitting like a beacon at the door. Mishelle had spent a very bad 4 hours and was now completely catatonic. They had her propped up in a mountain of pillows and we were all scared this was it. She had many visitors over the day and barely acknowledged anyone. In light of this new developement, I stayed the night. I had to keep checking to see if she was still breathing.
But, in true Mishelle style, She sat up at 4:00 am (which is amazing, cause she can't sit up alone) and told me she wanted a rock star. I said "you want a what?" She said "a break star". What she actually meant was a break through pain med. So typical, she is near death one day and sitting up in her wheel chair the next smoking a cigarette.
So, it is now Monday and she woke up this morning thinking that it was sunday night and that desperate housewives would be coming on soon.
Today she has had about 25 visitors and it has totally knocked her out. She took a huge leap this morning after Richard came to visit her. She was chatting to us about how she wants things to look when she is gone. She is happy and we actually laughed out loud a few times. We decided on a secret signal, a way that she will be able to tell me she is still here. It's a very foggy, misty day out here. She asked me to bundle her up and take for a ride around the property. So we did ... twice. After 10 months of holding her hand and my breath and never letting her see me cry, I finally got to rest my head in her lap and cry and tell her how I felt. It's been tough to relax because she has been fighting so hard, right up until this very moment. We have all been longing to have a loving conversation with her. She is totally sorting her emotion laundry and getting all her ducks in a row.
Now, with that being said, she has asked that at this time she only wants to have her family with her. She was so very happy to have all the visitors today but it totally exhausted her. If anyone wants to come out, please call me first. If you come to the hospice, you may be turned away. Please don't take it personally, these are her wishes.
I am updating this from her room and will update if opportunity arises. I will be camped out here from now on and if Jessica brings her laptop again, I will update then.
Mishelle sends her love to everyone.
Sunday, March 21, 2010
Foothills country hospice
Wow, what a great place! We found out Friday morning that a room came available at the inn and we had to move Saturday morning. I decided to start the move Friday due to the high volume of crap mishelle has accumulated over the last couple of months of being in hospital. I filled the whole back of my van, the woman does not travel light!
We will not miss the hustle and bustle of unit 47. they are totally wonderful there but Oh My God .... Mishelle had about 8 room mates the last weeks there and it's hard to deal with other peoples schedules. It did however put some things into perspective. Last week I was driving to the hospital all in a flap about mishelle and the horrible things she was having to go through. All I could think of was what a terrible way to have to go. Then she got her new room mate. I was sponge bathing Mishelle when the new ladies Doctor and a surgeon came in to talk to her. The curtain that separates the beds leaves zero privacy and I was a little perturbed about the invasion at that time. It became immediately clear that it was us that were invading. The poor woman was explaining how she was in constant pain due to the baseball sized bed sores on her back side. That wearing a diaper was making it 100 times worse and that she needed a team of 3 people to help her roll to her side. The Doctor's didn't comment on that but instead wanted to review her options. The spoke of how she had a large section of bone removed from her arm which rendered it useless. This was due to a large tumor that had to be removed. Now another one was growing on her hip and leg and they were trying to decide if they should operate and put a steel rod into her leg. She asked if they could remove the tumor, they said no. She spoke of the incredible amount of pain she was having.
For the 3 days that she was there she only had 2 visitors. And they didn't stay to long.
This horrible insight made me appreciate Mishelles situation. We seem blessed in comparison.
It felt a little weird to be leaving the safety of the hospital. A final step that we could not take back. There will be no more heroic attempt to fix what is broken. When things go sideways, we grab the holy shit handle and go for the ride.
A transport ambulance was called in to take her there. At first I thought "why an ambulance? I could drive her." We had just had her home last weekend. But this speaks to how when you are around someone all the time that you fail to recognize how much weaker she has become in just a week. She now needs help to sit up in bed or get up from a sitting position. She just does not have the umpf to force herself up. She is a skinny mini but still is surprisingly heavy. She has no fat on her bum and has a very sore spot on her tail bone. It looks like a burn. She is completely obstructed again and it's not likely that this will reverse this time.
There is no way I would have been able to drive her ... she totally needed the ambulance. The drivers were great and Sandi rode in the ambulance and I followed behind. I cried all the way there and just when I composed myself, we turned the corner to the driveway to the hospice. The full panoramic view of the mountains was totally breathtaking. And I once again started to bawl. Who ever put that hospice there will earn a special place in heaven. If you come and it is a clear day, prepare to be blown away.
So, we got her in her room and she was elated! No speakers announcing who needs what drugs no one wandering into her room unannounced. A free flat screen TV. A big leather reclining chair and a large comfy couch. Beautifully decorated. A huge bathroom with a shower that she can sit in a chair. I think that the universe must have been listening when we asked for this place as a first pick. Nothing else in this journey has gone our way until now.
Check out the link to see the place.
countryhospice.org
I hope that those of you who are reading this will have the chance to come out and see Mishelle. I believe we have only a few weeks, however with that being said ... Mishelle still believes that she is going to beat this thing. She has the most incredible tenacity we have ever seen. To me, the weaker she becomes the more innocent and sweet she becomes. I know it's hard for some people to see someone when they are at the end of their life. They look sick. But if you can look past that and just look into her big beautiful blue green eyes, here you will see love, strength acceptance, a life time of experience and most importantly hope.
I will update again soon.
We will not miss the hustle and bustle of unit 47. they are totally wonderful there but Oh My God .... Mishelle had about 8 room mates the last weeks there and it's hard to deal with other peoples schedules. It did however put some things into perspective. Last week I was driving to the hospital all in a flap about mishelle and the horrible things she was having to go through. All I could think of was what a terrible way to have to go. Then she got her new room mate. I was sponge bathing Mishelle when the new ladies Doctor and a surgeon came in to talk to her. The curtain that separates the beds leaves zero privacy and I was a little perturbed about the invasion at that time. It became immediately clear that it was us that were invading. The poor woman was explaining how she was in constant pain due to the baseball sized bed sores on her back side. That wearing a diaper was making it 100 times worse and that she needed a team of 3 people to help her roll to her side. The Doctor's didn't comment on that but instead wanted to review her options. The spoke of how she had a large section of bone removed from her arm which rendered it useless. This was due to a large tumor that had to be removed. Now another one was growing on her hip and leg and they were trying to decide if they should operate and put a steel rod into her leg. She asked if they could remove the tumor, they said no. She spoke of the incredible amount of pain she was having.
For the 3 days that she was there she only had 2 visitors. And they didn't stay to long.
This horrible insight made me appreciate Mishelles situation. We seem blessed in comparison.
It felt a little weird to be leaving the safety of the hospital. A final step that we could not take back. There will be no more heroic attempt to fix what is broken. When things go sideways, we grab the holy shit handle and go for the ride.
A transport ambulance was called in to take her there. At first I thought "why an ambulance? I could drive her." We had just had her home last weekend. But this speaks to how when you are around someone all the time that you fail to recognize how much weaker she has become in just a week. She now needs help to sit up in bed or get up from a sitting position. She just does not have the umpf to force herself up. She is a skinny mini but still is surprisingly heavy. She has no fat on her bum and has a very sore spot on her tail bone. It looks like a burn. She is completely obstructed again and it's not likely that this will reverse this time.
There is no way I would have been able to drive her ... she totally needed the ambulance. The drivers were great and Sandi rode in the ambulance and I followed behind. I cried all the way there and just when I composed myself, we turned the corner to the driveway to the hospice. The full panoramic view of the mountains was totally breathtaking. And I once again started to bawl. Who ever put that hospice there will earn a special place in heaven. If you come and it is a clear day, prepare to be blown away.
So, we got her in her room and she was elated! No speakers announcing who needs what drugs no one wandering into her room unannounced. A free flat screen TV. A big leather reclining chair and a large comfy couch. Beautifully decorated. A huge bathroom with a shower that she can sit in a chair. I think that the universe must have been listening when we asked for this place as a first pick. Nothing else in this journey has gone our way until now.
Check out the link to see the place.
countryhospice.org
I hope that those of you who are reading this will have the chance to come out and see Mishelle. I believe we have only a few weeks, however with that being said ... Mishelle still believes that she is going to beat this thing. She has the most incredible tenacity we have ever seen. To me, the weaker she becomes the more innocent and sweet she becomes. I know it's hard for some people to see someone when they are at the end of their life. They look sick. But if you can look past that and just look into her big beautiful blue green eyes, here you will see love, strength acceptance, a life time of experience and most importantly hope.
I will update again soon.
Tuesday, March 16, 2010
Hi Ho Hi Ho it off to hospice we go
Today I spoke to the Palliative Doc and we discussed the weekend. We had mishelly home again and it was a little scary. She fell and could not get back up. She sure tried but in the end Jess and I had to pick her up. She vomited Saturday night before going home. Fortelling another obstruction It was obvious that she was not feeling well at all. I called Sunday morning and she sounded terrible. I thought for sure she would stay in the hospital Sunday. Then a few hours later she called. She said she had shit, showered and shaved and was ready to be picked up. Again, I am stunned at her fortitude. I picked her up and dropped her off at home. I gave her a full body massage and wanted to cry at the extent of muscle deteriation. By diner time she looking dreadful and I was unsure if she was going to make it through. But of course she did!
The Doc and the social worker both agreed that it would be too hard to bring her home. Her needs are too great to be met from us. I feel like I have failed her by not looking after her. The Doc said we needed to talk her into going into hospice. I hate these talks with Mishelle. I feel like we are forcing her to see the truth and it breaks my heart to see her like this. She totally thinks she is going to get better. We are dumbfounded by this refusal to come to terms with her situation. She simply will not be broken. Her spirit refuses to accept that she is not long for this world. The more this disease pushes her the harder she pushes back. She just keeps fighting. She see’s that her muscles are gone and she tries to lift weights to help get them back. She can’t pee without a catheter so she teaches herself how to do it. She can’t walk but she gets to that wheel chair and gets outside. I doubt I would have lasted as long.
The Doc used his usual tact and expertise to help her decide to go to hospice. Most people if told they were going to a hospice would crack or break down. Not Mishelle. And so, I feel as if I have betrayed her once again and now she will not be going home. I hope this is the right move.
There are brief times when I feel shear panic and terror. It reaches in and grabs my heart and squeezes, for a moment I can’t breathe. It always catches me off guard. Like when I am blowing my hair dry and a sudden image of her sitting at my table looking like she may drop, knowing she can tell we see it and watching her use every ounce of strength she can manage to pretend everything is okay. I try very hard not to focus on how her body is changing. In the last week, we have seen some pretty significant changes. She is so very very thin now. Her face is so small. Her belly is so very distended. She tries to eat but I can just tell that her body will not allow it. She believes that to eat is to live and she is trying to feed that need. Most of the time that I spend with her, I just accept that I can’t change any of the things that she is going through. I take control; I remain calm and never let her see how scared I am inside. She never cry’s … never. I don’t get that either. She has innocence about her, like a little kid would have. She is always cheerful when I get to the hospital. Her face lights up because right now those of us who come to her are her whole life. The Doc tells me to stop spending so much time here. But I feel like she is all alone and then I feel bad. I think of her house and all the things in it, I can’t imagine her not being in the middle of it all. All her hopes and dreams and aspirations, the things that brought her joy. All there without her. Perhaps it’s the fact that she continues to look for reassurance that she will beat this thing. Reassurance we can’t give her. She has spent the last 10 months in extreme pain and I guess on some level I am glad that we can see the finish line. As tough as she is, it still really sucks to watch her go through it.
Last night I stayed up all night wondering who would be my person when she is gone. My person is being pulled away from me and I don’t know who I will turn to when I am scared or when I feel like I can’t go on. There is no one who loves me or understands me like she does. We were supposed to grow old together and now I sit here and watch her breathing. It’s slow and irregular and labored.
But, it’s not all about me…..for now I will pull myself together so she doesn’t see me cry.
So, it’s off to hospice we go. It will take a few days to a week to get her in. We had to pick from 3 and who ever has room will take her. I will post again if anything should come up before that and will post when we get the call for hospice.
The Doc and the social worker both agreed that it would be too hard to bring her home. Her needs are too great to be met from us. I feel like I have failed her by not looking after her. The Doc said we needed to talk her into going into hospice. I hate these talks with Mishelle. I feel like we are forcing her to see the truth and it breaks my heart to see her like this. She totally thinks she is going to get better. We are dumbfounded by this refusal to come to terms with her situation. She simply will not be broken. Her spirit refuses to accept that she is not long for this world. The more this disease pushes her the harder she pushes back. She just keeps fighting. She see’s that her muscles are gone and she tries to lift weights to help get them back. She can’t pee without a catheter so she teaches herself how to do it. She can’t walk but she gets to that wheel chair and gets outside. I doubt I would have lasted as long.
The Doc used his usual tact and expertise to help her decide to go to hospice. Most people if told they were going to a hospice would crack or break down. Not Mishelle. And so, I feel as if I have betrayed her once again and now she will not be going home. I hope this is the right move.
There are brief times when I feel shear panic and terror. It reaches in and grabs my heart and squeezes, for a moment I can’t breathe. It always catches me off guard. Like when I am blowing my hair dry and a sudden image of her sitting at my table looking like she may drop, knowing she can tell we see it and watching her use every ounce of strength she can manage to pretend everything is okay. I try very hard not to focus on how her body is changing. In the last week, we have seen some pretty significant changes. She is so very very thin now. Her face is so small. Her belly is so very distended. She tries to eat but I can just tell that her body will not allow it. She believes that to eat is to live and she is trying to feed that need. Most of the time that I spend with her, I just accept that I can’t change any of the things that she is going through. I take control; I remain calm and never let her see how scared I am inside. She never cry’s … never. I don’t get that either. She has innocence about her, like a little kid would have. She is always cheerful when I get to the hospital. Her face lights up because right now those of us who come to her are her whole life. The Doc tells me to stop spending so much time here. But I feel like she is all alone and then I feel bad. I think of her house and all the things in it, I can’t imagine her not being in the middle of it all. All her hopes and dreams and aspirations, the things that brought her joy. All there without her. Perhaps it’s the fact that she continues to look for reassurance that she will beat this thing. Reassurance we can’t give her. She has spent the last 10 months in extreme pain and I guess on some level I am glad that we can see the finish line. As tough as she is, it still really sucks to watch her go through it.
Last night I stayed up all night wondering who would be my person when she is gone. My person is being pulled away from me and I don’t know who I will turn to when I am scared or when I feel like I can’t go on. There is no one who loves me or understands me like she does. We were supposed to grow old together and now I sit here and watch her breathing. It’s slow and irregular and labored.
But, it’s not all about me…..for now I will pull myself together so she doesn’t see me cry.
So, it’s off to hospice we go. It will take a few days to a week to get her in. We had to pick from 3 and who ever has room will take her. I will post again if anything should come up before that and will post when we get the call for hospice.
Friday, March 12, 2010
Another dry run
March 12 2010
We are going to bring Mishelle home this Saturday. She will spend some time alone and we will see how she handles it. She still can't pee by herself and the nurses are trying to teach her how to self catheterize. Yikes!! Don't know how thats going to work out.
But it is now time for trial by fire. I will post on the outcome of this weekend next week.
She was having a bit of a rough day yesterday. I think she is getting quite dehydrated again and the Dr told her that she needs to drink more but she seems to be having a tough time getting it done.
We are going to bring Mishelle home this Saturday. She will spend some time alone and we will see how she handles it. She still can't pee by herself and the nurses are trying to teach her how to self catheterize. Yikes!! Don't know how thats going to work out.
But it is now time for trial by fire. I will post on the outcome of this weekend next week.
She was having a bit of a rough day yesterday. I think she is getting quite dehydrated again and the Dr told her that she needs to drink more but she seems to be having a tough time getting it done.
Wednesday, March 10, 2010
Going Home
Well, it's been awhile since I updated. Two sick kids and a sick husband and a healthy Mishelle have left me with a chance to get off the roller coaster for a short while.
The last week brought a reprieve for Mishelle. Her bowel unobstructed and she has been able to eat small amounts. This is great and has given her the opportunity to enjoy a few things she has missed out on in the last month and a half. We are celebrating this and enjoying it for as long as we can.
With this improvement, Mishelle has decided she would like to get out of the hospital and go home. However the reality of the situation is that it will not be easy to do. She has been getting a little ahead of herself. She even talked about driving to go shopping. (her keys are securely hidden away)
We pulled her out of the hospital on a test run Saturday and Sunday and she failed the test. She does not have the strength to lift her legs very well. I almost broke her arm on Saturday when she went to go up her front steps and could not lift her leg and fell into me. I grabbed her by the arm and tried to use it as leverage, I felt the flex and had to grab her whole body. She may be skinny but she weighs a ton and I almost dropped her! When we got her inside, she went out to the Deck to have a smoke and could not get back in the house. She was not able to remember to take her medication. Sunday was a little better but she lost control of her ability to lift her legs near the end of the day.
On the positive side, Mishelle went out and bought some new clothes and she looked beautiful and I could tell she felt beautiful for the first time in a long time. My pillar of strength was back in fine form.
Monday came and brought with it more problems. It seems that Mishelles bladder has decided to stop working. She has needed to be catheterized several times since Monday. She has significant disease in the area of the bladder and kidneys so we are not sure what is quiting. This has not dashed her enthusiasm to go home.
This morning Jessica, Sandi, Mishelle and I met with her Dr and the transition nurse and got down to the nuts and bolts of her coming home.
It was agreed by all (except Mishelle) that it will be quite a commitment to bring her home. She cannot be left alone for any length of time. She has moments of utter confusion and other of being crystal clear. The Dr expressed fears that she would fall asleep with a cig or burn the kitchen down by forgetting she was cooking. Our concerns are that she will go outside and not be able to get back in. Or worse, will fall down and not be able to get back up. Cause, if she fell she would not get back up, that much is clear. We worry that a catastrophic event will happen and Jessica will come home to find her. I have asked her to come and live with me. She will not have any part of that.
Mishelle is very determined that she will beat this thing. She is an amazing, determined and strong willed soul. I think that coming home will put her on the threshold of reality. We all agree that she needs to get home to realize what her abilities are in this regard. We are trying to work with her and home care to get her there for now. We also discussed that the next step after this one ... when she falls into crisis again .... will be hospice. She is going to get a call button, that she wears all the time and if she does take a spill she can hit the button and it will call one of us. Home care will be coming once a day to check on her as well.
We have explained to her that none of us can spend all day with her. So here is my request to those of you who know Mishelle well. If you are able to drop in on her during the day, please do.
I will post on this blog when and if she makes it home.
The reality is, when she takes the first fall or forgets to take her meds and gets into a pain crisis, we will get her on the wait list for hospice.
This is her last kick at the cat and we are going to try to make it a happy and successful one.
I will try to update every other day.
Renee
The last week brought a reprieve for Mishelle. Her bowel unobstructed and she has been able to eat small amounts. This is great and has given her the opportunity to enjoy a few things she has missed out on in the last month and a half. We are celebrating this and enjoying it for as long as we can.
With this improvement, Mishelle has decided she would like to get out of the hospital and go home. However the reality of the situation is that it will not be easy to do. She has been getting a little ahead of herself. She even talked about driving to go shopping. (her keys are securely hidden away)
We pulled her out of the hospital on a test run Saturday and Sunday and she failed the test. She does not have the strength to lift her legs very well. I almost broke her arm on Saturday when she went to go up her front steps and could not lift her leg and fell into me. I grabbed her by the arm and tried to use it as leverage, I felt the flex and had to grab her whole body. She may be skinny but she weighs a ton and I almost dropped her! When we got her inside, she went out to the Deck to have a smoke and could not get back in the house. She was not able to remember to take her medication. Sunday was a little better but she lost control of her ability to lift her legs near the end of the day.
On the positive side, Mishelle went out and bought some new clothes and she looked beautiful and I could tell she felt beautiful for the first time in a long time. My pillar of strength was back in fine form.
Monday came and brought with it more problems. It seems that Mishelles bladder has decided to stop working. She has needed to be catheterized several times since Monday. She has significant disease in the area of the bladder and kidneys so we are not sure what is quiting. This has not dashed her enthusiasm to go home.
This morning Jessica, Sandi, Mishelle and I met with her Dr and the transition nurse and got down to the nuts and bolts of her coming home.
It was agreed by all (except Mishelle) that it will be quite a commitment to bring her home. She cannot be left alone for any length of time. She has moments of utter confusion and other of being crystal clear. The Dr expressed fears that she would fall asleep with a cig or burn the kitchen down by forgetting she was cooking. Our concerns are that she will go outside and not be able to get back in. Or worse, will fall down and not be able to get back up. Cause, if she fell she would not get back up, that much is clear. We worry that a catastrophic event will happen and Jessica will come home to find her. I have asked her to come and live with me. She will not have any part of that.
Mishelle is very determined that she will beat this thing. She is an amazing, determined and strong willed soul. I think that coming home will put her on the threshold of reality. We all agree that she needs to get home to realize what her abilities are in this regard. We are trying to work with her and home care to get her there for now. We also discussed that the next step after this one ... when she falls into crisis again .... will be hospice. She is going to get a call button, that she wears all the time and if she does take a spill she can hit the button and it will call one of us. Home care will be coming once a day to check on her as well.
We have explained to her that none of us can spend all day with her. So here is my request to those of you who know Mishelle well. If you are able to drop in on her during the day, please do.
I will post on this blog when and if she makes it home.
The reality is, when she takes the first fall or forgets to take her meds and gets into a pain crisis, we will get her on the wait list for hospice.
This is her last kick at the cat and we are going to try to make it a happy and successful one.
I will try to update every other day.
Renee
Wednesday, March 3, 2010
Moving on up!
March 3, 2010
Well, it's good to be home! Mishelle is back to unit 47 and it, as with all things , did not go smoothly.
She was put in a lovely semi private room, she got the bed by the window. Unfortunately her room mate had a huge chip on her shoulder and decided to take all her anger out on Mishelle.
But we got her moved to another equally fabulous room and I think this room mate is much nicer. However her TV is pink,but we will get that fixed tomorrow.
This is really the best place for her now, they rock on 47.
Today she looked pretty good! She is still on clear fluid diet but as always she has to push the envelope. She ate 2 fresh baked chocolate chip cookies. The nurse gave her hell for it. If she pushes the solids to fast she will obstruct again. If your there ... watch her. Remind her not to eat cookiess :-)
She now is hydrating by mouth and has a sub q line in her thigh to get all the meds she needs.
We played cards and she kicked my ass!
It's late and so that's it for tonight.
I will upate again tomorrow.
Well, it's good to be home! Mishelle is back to unit 47 and it, as with all things , did not go smoothly.
She was put in a lovely semi private room, she got the bed by the window. Unfortunately her room mate had a huge chip on her shoulder and decided to take all her anger out on Mishelle.
But we got her moved to another equally fabulous room and I think this room mate is much nicer. However her TV is pink,but we will get that fixed tomorrow.
This is really the best place for her now, they rock on 47.
Today she looked pretty good! She is still on clear fluid diet but as always she has to push the envelope. She ate 2 fresh baked chocolate chip cookies. The nurse gave her hell for it. If she pushes the solids to fast she will obstruct again. If your there ... watch her. Remind her not to eat cookiess :-)
She now is hydrating by mouth and has a sub q line in her thigh to get all the meds she needs.
We played cards and she kicked my ass!
It's late and so that's it for tonight.
I will upate again tomorrow.
Tuesday, March 2, 2010
My sisters keeper
March 2, 2010
Hello,
This is my first time doing this and I see the title is my mishelles's cancer update. Not what I wanted but I don't know how to change it.
Anyway, I want to use this blog to update everyone on how Mishelle is doing. I know there are so many people who care about her and want to know whats happening. I find that I am getting so many phone calls and I have to go over everything again and again. I will try to do a daily update. I spend most days with her, I want to get every second in.
I will go back in time a little to explain where she has been with this bloody stupid disease.
It's been about nine months since the cancer re-occurred. She became ill in Vegas and that is where this bumpy ride began. She came back to Calgary, against medical advice and had extensive abdominal surgery. It was discovered that her bowel was completely blocked by a hefty tumor. The analogy that the Dr's gave us was that ovarian cancer is like taking a hand full of rice and throwing it in the abdomen. That is how it grows he told me. In Mishelles case that is exactly what it had done. It was everywhere and had invaded her liver as well. The cancer was deemed inoperable due to one of the large tumors being wrapped around her aorta. A colostomy was done and they just sewed her back up. He oncologist lamented that "this disease will always come back to kick you in the ass".
Her recovery was a very long and tedious process. A gift from that surgery was tenesimes pain. It never goes away and is excruciating. Mishelle was not able to return to work due to this pain and her inability to get it fully under control. She never really recovered from that surgery. We all watched as she spent more and more time on the couch and was unable to get up.
Then she started chemo, Carboplatin and taxol were on the menu. Cheryl her chemo buddy was ready to roll and spent the whole day at the hospital with her. The first chemo went okay and we all braced and prayed that it would help to shrink the big tumors so they cold get them out of her body and buy her some time.
Then came the second round. For some reason the stars were not aliened that day and no one could go with her. Peggy her friend dropped her off and I was going to pick her up after. She was cool with it because she slept most of the day. Well, I walked into the ward and saw a big kerfuffle going on. I thought, "oh oh someones in trouble". There was a sea of white coats surrounding the little pod. It took a minute to register that it was her in the midst of all that chaos. The white coats parted and I saw her laying there pale and limp. I knew it was her as soon as I saw the pink scarf on her head. For the first time ever, she looked little.
Her Doctor intercepted me immediately and took me aside and asked that I stand back and let them work on her. She must have sensed my presence because she called out my name and reached out for me. I took her hand and in that instant our roles reversed. She had always been the one in control, the one looking after me, my big sister. Honestly, I wanted to run away. It was at the moment that I realized she was going to die from this awful disease. But we got through the crisis and prepared for a second try.
The next round of chemo came and they tried a different cocktail. She reacted to that one as well. It was determined that she was sensitive to platinum based chemo and we were advised to move to the second line chemo. This was a lovely drug ... NOT!
Calyx was the name and burning through you skin was the game. Yes, this little beauty gets into your system and causes a little side effect called hand and foot syndrome. It's caused by the drug actually burning it's way out of your body. Fabulous! In spite of it all Mishelle put on a brave face and was convinced it would get that cancer out of her.
The plan was to do 3 cycles of calyx and then to do a CT scan and see if it was working. She appeared to tolerate the Calyx.
Through all of this Mishelle never cried once. She was in so much pain, it was ridiculous. She was always cheerful and so incredibly optimistic. Did I mention how stubborn she is? She was totally debilitated by the pain but still kept smiling. We finally talked her into going to the pain clinic at the Tom Baker centre and she started a few different regiments to get the pain under control. Nothing worked. She finally allowed us to admit her to hospital to help her feel better. The results came back from the CT scan and it was not good news. The Dr called it a mixed bag. One tumor shrunk a little but others grew and the tumors in her liver grew and multiplied. After a very long 7 days, and a fourth round of Calyx ( which she convinced her Doc would work this time) she checked out .... still in pain and now ill from the Calyx.
Against Mishelle's wishes I had the Home care team come out and assess a quickly fading girl. She was obviously super dehydrated and soon began vomiting. Litres and litres of fluid was leaving her body. We tried to hydrate her through a sub cue line and only managed to give her popeye arms. The fluid would not absorb. Again, we almost lost her. She was so very sick and weak and dehydrated. We rushed her to the hospital and hooked her up to some IV fluids and got her back.
Unfortunately we also discovered that her intestines were totally obstructed by tumors. The possible fix for this is a drug called octreotide. It helps to settle the gut. And if used with a steroid, can help to shrink the inflammation caused by the tumors. On top of this she has been getting a ton of morphine. She followed this regime for over a week with no success. Her Doctor advises her that eating food will not prolong her life and that she needs to stop eating and let the iv fluids hydrate her. Finally she cries, we both do and helps her move on to acceptance of what her body is going through.
Then when we think it can't get worse ... it does. Her body starts to have a toxic reaction to all the morphine she needs to ease the pain. When this happens, the morphine stops working and the brain and nervous system react badly. She had extreme confusion and was having horrible hallucinations. Her pain was at a 10 out of 10 for over 24 hours. Again, Mishelle showed us what it's like to be super human. Fortunately her Dr recognized what was happening and switches her pain meds around to help her get some relief. Once again, disaster averted.
Then Miraculously the otreotide worked. Her bowel opened up enough that she is now hydrating orally. She has been moved to the special services building at the Tom Baker centre - unit 47. This will be her home for now. They are best suited to care for her at this stage and she seems happy.
I would like to take a moment to say that all of Mishelles Doctors and the nursing staff on unit 42 are totally amazing.
Her oncologists Dr Ghatke - Dr Nelson for doing everything they possibly could and more.
Dr LaBrie her palliative care Doc. - She loves him!
And the Hutterites for all the amusement they supplied.
Hello,
This is my first time doing this and I see the title is my mishelles's cancer update. Not what I wanted but I don't know how to change it.
Anyway, I want to use this blog to update everyone on how Mishelle is doing. I know there are so many people who care about her and want to know whats happening. I find that I am getting so many phone calls and I have to go over everything again and again. I will try to do a daily update. I spend most days with her, I want to get every second in.
I will go back in time a little to explain where she has been with this bloody stupid disease.
It's been about nine months since the cancer re-occurred. She became ill in Vegas and that is where this bumpy ride began. She came back to Calgary, against medical advice and had extensive abdominal surgery. It was discovered that her bowel was completely blocked by a hefty tumor. The analogy that the Dr's gave us was that ovarian cancer is like taking a hand full of rice and throwing it in the abdomen. That is how it grows he told me. In Mishelles case that is exactly what it had done. It was everywhere and had invaded her liver as well. The cancer was deemed inoperable due to one of the large tumors being wrapped around her aorta. A colostomy was done and they just sewed her back up. He oncologist lamented that "this disease will always come back to kick you in the ass".
Her recovery was a very long and tedious process. A gift from that surgery was tenesimes pain. It never goes away and is excruciating. Mishelle was not able to return to work due to this pain and her inability to get it fully under control. She never really recovered from that surgery. We all watched as she spent more and more time on the couch and was unable to get up.
Then she started chemo, Carboplatin and taxol were on the menu. Cheryl her chemo buddy was ready to roll and spent the whole day at the hospital with her. The first chemo went okay and we all braced and prayed that it would help to shrink the big tumors so they cold get them out of her body and buy her some time.
Then came the second round. For some reason the stars were not aliened that day and no one could go with her. Peggy her friend dropped her off and I was going to pick her up after. She was cool with it because she slept most of the day. Well, I walked into the ward and saw a big kerfuffle going on. I thought, "oh oh someones in trouble". There was a sea of white coats surrounding the little pod. It took a minute to register that it was her in the midst of all that chaos. The white coats parted and I saw her laying there pale and limp. I knew it was her as soon as I saw the pink scarf on her head. For the first time ever, she looked little.
Her Doctor intercepted me immediately and took me aside and asked that I stand back and let them work on her. She must have sensed my presence because she called out my name and reached out for me. I took her hand and in that instant our roles reversed. She had always been the one in control, the one looking after me, my big sister. Honestly, I wanted to run away. It was at the moment that I realized she was going to die from this awful disease. But we got through the crisis and prepared for a second try.
The next round of chemo came and they tried a different cocktail. She reacted to that one as well. It was determined that she was sensitive to platinum based chemo and we were advised to move to the second line chemo. This was a lovely drug ... NOT!
Calyx was the name and burning through you skin was the game. Yes, this little beauty gets into your system and causes a little side effect called hand and foot syndrome. It's caused by the drug actually burning it's way out of your body. Fabulous! In spite of it all Mishelle put on a brave face and was convinced it would get that cancer out of her.
The plan was to do 3 cycles of calyx and then to do a CT scan and see if it was working. She appeared to tolerate the Calyx.
Through all of this Mishelle never cried once. She was in so much pain, it was ridiculous. She was always cheerful and so incredibly optimistic. Did I mention how stubborn she is? She was totally debilitated by the pain but still kept smiling. We finally talked her into going to the pain clinic at the Tom Baker centre and she started a few different regiments to get the pain under control. Nothing worked. She finally allowed us to admit her to hospital to help her feel better. The results came back from the CT scan and it was not good news. The Dr called it a mixed bag. One tumor shrunk a little but others grew and the tumors in her liver grew and multiplied. After a very long 7 days, and a fourth round of Calyx ( which she convinced her Doc would work this time) she checked out .... still in pain and now ill from the Calyx.
Against Mishelle's wishes I had the Home care team come out and assess a quickly fading girl. She was obviously super dehydrated and soon began vomiting. Litres and litres of fluid was leaving her body. We tried to hydrate her through a sub cue line and only managed to give her popeye arms. The fluid would not absorb. Again, we almost lost her. She was so very sick and weak and dehydrated. We rushed her to the hospital and hooked her up to some IV fluids and got her back.
Unfortunately we also discovered that her intestines were totally obstructed by tumors. The possible fix for this is a drug called octreotide. It helps to settle the gut. And if used with a steroid, can help to shrink the inflammation caused by the tumors. On top of this she has been getting a ton of morphine. She followed this regime for over a week with no success. Her Doctor advises her that eating food will not prolong her life and that she needs to stop eating and let the iv fluids hydrate her. Finally she cries, we both do and helps her move on to acceptance of what her body is going through.
Then when we think it can't get worse ... it does. Her body starts to have a toxic reaction to all the morphine she needs to ease the pain. When this happens, the morphine stops working and the brain and nervous system react badly. She had extreme confusion and was having horrible hallucinations. Her pain was at a 10 out of 10 for over 24 hours. Again, Mishelle showed us what it's like to be super human. Fortunately her Dr recognized what was happening and switches her pain meds around to help her get some relief. Once again, disaster averted.
Then Miraculously the otreotide worked. Her bowel opened up enough that she is now hydrating orally. She has been moved to the special services building at the Tom Baker centre - unit 47. This will be her home for now. They are best suited to care for her at this stage and she seems happy.
I would like to take a moment to say that all of Mishelles Doctors and the nursing staff on unit 42 are totally amazing.
Her oncologists Dr Ghatke - Dr Nelson for doing everything they possibly could and more.
Dr LaBrie her palliative care Doc. - She loves him!
And the Hutterites for all the amusement they supplied.
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