People come and go from our lives, some remain constant, others come for a while and go, they may come back, they may not. Some people we take for granted; we think they will always be there for us.
There are people in our lives currently, that had they not been here for us; I do not know where we would be right now. Our family has come to our aid on numerous occasions, Julie, Marlene, Marti, Dora, Alyssa, Eric, Art, Lori, Laura, Erin, Alex and Fran have all played a part in helping us care for Lin.
Our friends have been here for for all types of help, no request has been out of the question: Allison, TK, Katrina, Genny, Mark, Jacque, Sarah, Marc, Jesse, Burt, Ron, Judy and numerous other friends (please do not be offended if I have forgotten to list you specifically; my brain seems to have gone haywire) have come to aid repeatedly.
It was Allison who has helped me to fill in the blank recently - I had forgotten what had happened on Saturday (what are friends for?).
From Allison: "Saturday was a very eventful day for Lin, as she was up around 5am. I believe you two had another talk about the status of things because she couldn't remember. By the time I got there at 7 to "help", all of you were sitting around the breakfast table. Lin had two pieces of toast in front of her - one with strawberry jam. She was eating fruit from the fruit bouquet someone sent you, (Thank you Aggies!! - they sent a beautiful fruit bouquet!) and some chocolate had fallen to the floor from one of the pears. She was adamant that I find the chocolate before one of the dogs did - she didn't want them to get sick. She looked GREAT, and we took a few photos right there at the table. Julie was still in bed (an anomaly, but good that she slept in and got a little rest). You talked to Lin about making sure to include Julie in things she could do to help, and once Julie came downstairs, Lin obliged by asking her Mom to make her coffee, and telling Marlene that her coffee wasn't as good as Julie's (such a comedian).
Lin also let all of us know her displeasure in the fact that she continued to be dressed in light-colored t-shirts, which are just way too easy to stain, especially when drinking juice from a straw.
After breakfast she wanted to go outside, so I took her, and left her with her Mom and Marlene. We sat inside until Marlene tried to bring her in around 9. Marlene said she just faded very fast. Marlene couldn't get her up the ramp, so I went to help. Lin wanted to get a clean shirt, so you took her to take care of that, and put on a very pretty aqua-colored one. Afterwards, she sat in the recliner and took a short nap. TK was also there.
Roni adding - Lin woke up telling of her needed help as he had been constipated 5 days now, this is despite our pouring all types of additives and medicines into her system at twice and three times the rate recommended. The morphine has a way to retard bowels and it is painful. She had a visit from the RN Director as her regular weekend RN, Dorthy was not able to attend to her. All the ladies in the house thought he was drop dead gorgeous. Julie went upstairs to put on lipstick! He sat and talked with us for a while and was ready to leave. I got up to walk him out and he miss-read my intentions and gave me big hug. Julie and Marlene got jealous and asked "what about us?"; they got a hug as well.
Laura came over on Saturday evening to help us out. Lin told us that she fell in love with her new girlfriend at Starbucks. She was a big flirt when it came to Laura. Anything Laura said, was fine with her. We all knew she was flirting and we laughed about it all.
We also got a delivery of some beautiful flowers and a tray of fruit on Saturday from Chellie and Wendy - thank you very much! The flowers are still blooming today, very beautiful colors (fruit is gone however, these Canadians love their fruit for breakfast)!
Sunday morning, I reminded Lin about her new girlfriend; she was embarrassed!! Laura is our niece. Her face turned especially red when I told her that Laura was coming back Sunday afternoon.
Without family and friends in our lives we would all be empty and void of love, kindness, affection, support, a shoulder to lean upon, someone to vent to and comfort. Have you hugged your loved one lately?
Wednesday, October 29, 2008
Tuesday, October 28, 2008
What's the routine in your life?
The days pass and I forget if it is Monday, Tuesday or Sunday. My only indicators in the past would be the Sunday paper, work schedule or getting ready for trash day for Wednesday.
I no longer read the paper, I don't even know if it gets delivered or not, someone will pick it up and it shows up in the dining room or living room somewhere, sometimes there may be more than one hanging around. I have a schedule that is not a schedule. I have to give Lin her meds at specific times, that is about it. Waking times vary as well as when I actually get to bed. I used to know it was trash day when I would drive home on Tuesday after work as my neighbors would already put their cans out. I have not ventured away from home but a handful of times since this all started.
I turned on the TV the other night and thought I would watch a show. We used to have certain shows that we would watch at night. Lin would make supper and we would cart out the TV trays to watch our favorites. As I looked at the Tivo listing, I noticed that I was almost out of storage. We have not been watching what we record. It used to be so important that Hero's or Ugly Betty was recording as scheduled so we could catch up on the latest or talk about what we thought might happen next. We even used to have a friend or two over in the past to watch certain shows, like dinner and a movie. Amazing how this is not as important as it used to be.
When I was going to work, I would get up and get ready while Lin would get up and make coffee, sometimes pack a lunch for me. Today, she woke up at six. I gave her morphine, sat her up in bed, got her fresh water and juice and made the coffee. Brought her a cup of coffee to bed and had to break the news that she was not going anywhere, despite her wishes, because we needed to get her into a new sling to transport her. She has lost about twenty pounds so had started to fall through the opening of her old sling, we had to switch to new one that is made for a totally immobile person. I would need help to position the new sling, everyone else was still asleep.
On Sunday, some of her friends came over to sit with her a while. It was very nice that they came over as a group, these are friends that she would meet at a support group weekly and then have coffee with them. She looked forward to this visit, however, getting cleaned up, dressed and moved from the bedroom to the living room, proved to be very tiring for her and so she was asleep by the time her friends got to sit with her. They were very kind in bringing a lasagna, salad and bread for our consumption later.
I know today is Tuesday, I changed watches so I could keep up with time and dates. I am at a total loss for Saturday! Eric came by to help with the laptop, it is the third time the hard drive has crashed, thankfully he has been able to recover the majority of our pictures. I think this all happened on Sunday, not sure.
Monday was a very trying day. Lin woke up full of piss and vinegar. She was ready to tackle the world. She awoke at 6am. She wanted to get dressed and get a move on going outside, making phone calls, lists, etc. As we dressed her we made note of intense skin color change in her legs, purplish blotchy knees and feet and the fact that they were freezing cold, an indication of her body shutting down as the blood is no longer flowing to her legs. She also had blood and clots in her urine. The surge of energy is also an indicator. The nurse agreed with the assessment as we have a listing of physical traits that we track. She advised once again, be ready, Lin's time to go can happen at any time.
I have promised Lin that I will keep her apprised of her health situation and had the first talk with her last week to let her know that she was in a dying process that was accelerated. With the tumors in her head, she forgets things. I had to bring her up to speed again on the situation and add that some of the indications now let us know that she could pass at any time.
Lin defies the laws of nature. Just hours after speaking with her and experiencing an emotional time, all her symptoms went away. The Hospice folks tell us that she is not following the "normal" dying process.
Today, she awoke at 6am. No indicator symptoms. She had coffee and yogurt for breakfast and then fell asleep in the recliner early in the morning. She awoke at 4pm, still all normal and sat outside for at least an hour. She is now napping on the couch.
Her heart is working harder than ever, however, her blood pressure has now dropped to normal. Her body vitals are much like our daily routine schedule, erratic at best.
I no longer read the paper, I don't even know if it gets delivered or not, someone will pick it up and it shows up in the dining room or living room somewhere, sometimes there may be more than one hanging around. I have a schedule that is not a schedule. I have to give Lin her meds at specific times, that is about it. Waking times vary as well as when I actually get to bed. I used to know it was trash day when I would drive home on Tuesday after work as my neighbors would already put their cans out. I have not ventured away from home but a handful of times since this all started.
I turned on the TV the other night and thought I would watch a show. We used to have certain shows that we would watch at night. Lin would make supper and we would cart out the TV trays to watch our favorites. As I looked at the Tivo listing, I noticed that I was almost out of storage. We have not been watching what we record. It used to be so important that Hero's or Ugly Betty was recording as scheduled so we could catch up on the latest or talk about what we thought might happen next. We even used to have a friend or two over in the past to watch certain shows, like dinner and a movie. Amazing how this is not as important as it used to be.
When I was going to work, I would get up and get ready while Lin would get up and make coffee, sometimes pack a lunch for me. Today, she woke up at six. I gave her morphine, sat her up in bed, got her fresh water and juice and made the coffee. Brought her a cup of coffee to bed and had to break the news that she was not going anywhere, despite her wishes, because we needed to get her into a new sling to transport her. She has lost about twenty pounds so had started to fall through the opening of her old sling, we had to switch to new one that is made for a totally immobile person. I would need help to position the new sling, everyone else was still asleep.
On Sunday, some of her friends came over to sit with her a while. It was very nice that they came over as a group, these are friends that she would meet at a support group weekly and then have coffee with them. She looked forward to this visit, however, getting cleaned up, dressed and moved from the bedroom to the living room, proved to be very tiring for her and so she was asleep by the time her friends got to sit with her. They were very kind in bringing a lasagna, salad and bread for our consumption later.
I know today is Tuesday, I changed watches so I could keep up with time and dates. I am at a total loss for Saturday! Eric came by to help with the laptop, it is the third time the hard drive has crashed, thankfully he has been able to recover the majority of our pictures. I think this all happened on Sunday, not sure.
Monday was a very trying day. Lin woke up full of piss and vinegar. She was ready to tackle the world. She awoke at 6am. She wanted to get dressed and get a move on going outside, making phone calls, lists, etc. As we dressed her we made note of intense skin color change in her legs, purplish blotchy knees and feet and the fact that they were freezing cold, an indication of her body shutting down as the blood is no longer flowing to her legs. She also had blood and clots in her urine. The surge of energy is also an indicator. The nurse agreed with the assessment as we have a listing of physical traits that we track. She advised once again, be ready, Lin's time to go can happen at any time.
I have promised Lin that I will keep her apprised of her health situation and had the first talk with her last week to let her know that she was in a dying process that was accelerated. With the tumors in her head, she forgets things. I had to bring her up to speed again on the situation and add that some of the indications now let us know that she could pass at any time.
Lin defies the laws of nature. Just hours after speaking with her and experiencing an emotional time, all her symptoms went away. The Hospice folks tell us that she is not following the "normal" dying process.
Today, she awoke at 6am. No indicator symptoms. She had coffee and yogurt for breakfast and then fell asleep in the recliner early in the morning. She awoke at 4pm, still all normal and sat outside for at least an hour. She is now napping on the couch.
Her heart is working harder than ever, however, her blood pressure has now dropped to normal. Her body vitals are much like our daily routine schedule, erratic at best.
Friday, October 24, 2008
Thursday and Friday were event filled days.
I went to the lawyers office. It is horrible that in this day and age gay people do not have the same civil rights as everyone else. I had to go and ensure that our interests were indeed addressed by the will that we had drawn up when we found out about the cancer almost two years ago. The lawyer advised that everything looked in order as far as the will; however, we have to look for precedent, etc on how to address real estate as we are both on the deeds. We are not sure how this will be looked at or handled considering we could not be legally married. That was a stress filled event, both prior and at the time of the appointment.
Lin woke up at 5am and was full of energy. She had to go outside. Alyssa was a big help while she was here! I hated to wake her so early, but I needed help. Getting her dressed is a big chore now. She ate breakfast and lunch and then crashed. She slept all afternoon and woke only for a few minutes in the evening.
She awoke at 2:30 am, Friday morning and wanted to go outside. Marti and Marlene took the night shift from me and they had "fun" convincing her that it was not a good idea as it was cold and too early.
Eric arrived at 7am for the morning shift, woke the girls up! I came down the stairs worried that no one had started administering morphine before her normal meds were due. Someone told me to go back to bed, they were on it. It is hard to rest not knowing if Lin is being tended to in the same manner that I have been addressing her needs. I was half awake / sleep listening to the monitor and could hear that both Marti and Marlene were being very attentive.
Thank goodness Eric was in, he helped to literally pick Lin up and move her to her w-chair without aid of the lift.
Genny brought over dinner on Friday, thank you! With Genny providing dinner, we were able to start work on funeral / memorial discussions. This is not an easy task. It is almost like you have to shut down your emotions and think of Lin in terms of a body instead of a living person. Marti did the hard work
We picked a poem for her memorial, it is called "When I'm Gone". I think she made the decision for us a long time away as everything will be themed with either beach or seagulls.
Her mother, sister and I talked about Lin's eventual obituary.
Saturday - Lin's breathing was very shallow this morning, her eyes were very sunken and her hands were drawing inward. She awoke again at 5am. I kept hearing a beeping sound and thought that it was my alarm, it was not. Someone left the refrigerator door open. I walked into Lin's room thinking something was wrong. She asked me to stay with her. I crawled into bed with her (a tight fit) and I had also turned on a Sade CD. We talked about allot of things that we had been avoiding. I also had to remind her that we had already spoken about the fact that she was in the dying process, she does not have allot of time left. We cried together.
After sometime, I went and got some help to get her up. Lin looked more beautiful than she had in a long time. He face was radiating, she had allot of color. The sunken eyes had disappeared. She sat at the breakfast table and ate. She went outdoors and sat with her mom and sister. She crashed around 9am. She slept until 1pm today. She woke up long enough to have some soup for lunch and managed to spill her drink 3 times. She coyly told Laura that she was helping her get ready for eventual child rearing. She fell back to sleep. We put her into bed around 3pm.
Her weekend nurse told us that Lin can go at any time. Her high blood pressure has started to come down. We thought it was a good sign...prior to her eventual passing, her blood pressure will drop and her heart will slow. We are wondering what will happen tonight...
I went to the lawyers office. It is horrible that in this day and age gay people do not have the same civil rights as everyone else. I had to go and ensure that our interests were indeed addressed by the will that we had drawn up when we found out about the cancer almost two years ago. The lawyer advised that everything looked in order as far as the will; however, we have to look for precedent, etc on how to address real estate as we are both on the deeds. We are not sure how this will be looked at or handled considering we could not be legally married. That was a stress filled event, both prior and at the time of the appointment.
Lin woke up at 5am and was full of energy. She had to go outside. Alyssa was a big help while she was here! I hated to wake her so early, but I needed help. Getting her dressed is a big chore now. She ate breakfast and lunch and then crashed. She slept all afternoon and woke only for a few minutes in the evening.
She awoke at 2:30 am, Friday morning and wanted to go outside. Marti and Marlene took the night shift from me and they had "fun" convincing her that it was not a good idea as it was cold and too early.
Eric arrived at 7am for the morning shift, woke the girls up! I came down the stairs worried that no one had started administering morphine before her normal meds were due. Someone told me to go back to bed, they were on it. It is hard to rest not knowing if Lin is being tended to in the same manner that I have been addressing her needs. I was half awake / sleep listening to the monitor and could hear that both Marti and Marlene were being very attentive.
Thank goodness Eric was in, he helped to literally pick Lin up and move her to her w-chair without aid of the lift.
Genny brought over dinner on Friday, thank you! With Genny providing dinner, we were able to start work on funeral / memorial discussions. This is not an easy task. It is almost like you have to shut down your emotions and think of Lin in terms of a body instead of a living person. Marti did the hard work
We picked a poem for her memorial, it is called "When I'm Gone". I think she made the decision for us a long time away as everything will be themed with either beach or seagulls.
Her mother, sister and I talked about Lin's eventual obituary.
Saturday - Lin's breathing was very shallow this morning, her eyes were very sunken and her hands were drawing inward. She awoke again at 5am. I kept hearing a beeping sound and thought that it was my alarm, it was not. Someone left the refrigerator door open. I walked into Lin's room thinking something was wrong. She asked me to stay with her. I crawled into bed with her (a tight fit) and I had also turned on a Sade CD. We talked about allot of things that we had been avoiding. I also had to remind her that we had already spoken about the fact that she was in the dying process, she does not have allot of time left. We cried together.
After sometime, I went and got some help to get her up. Lin looked more beautiful than she had in a long time. He face was radiating, she had allot of color. The sunken eyes had disappeared. She sat at the breakfast table and ate. She went outdoors and sat with her mom and sister. She crashed around 9am. She slept until 1pm today. She woke up long enough to have some soup for lunch and managed to spill her drink 3 times. She coyly told Laura that she was helping her get ready for eventual child rearing. She fell back to sleep. We put her into bed around 3pm.
Her weekend nurse told us that Lin can go at any time. Her high blood pressure has started to come down. We thought it was a good sign...prior to her eventual passing, her blood pressure will drop and her heart will slow. We are wondering what will happen tonight...
Wednesday, October 22, 2008
Transition is not just another word
According to Encarta Dictionary , transition is a process or period in which something undergoes a change and passes from one state, stage, form, or activity to another. We, all people, are always in a a transition state. For Lin it is a bit more obvious, now.
I can't believe that last night she was awake and talking to us just like any other day in the past. She was more of a comedian that she has ever been, really funny. Yesterday, she slept from noon to 7:30pm, no one had to prod her to take a nap as in the past, which is usually the case.
I awoke this morning to the sound of her voice calling me to take her to the bathroom. We did our normal routine. I left her to do her business and walked to the front door to let in the sunshine. The season has transformed from summer to autumn, with gloomy skies and cold air blowing. I closed the door rapidly and went back to check on Lin, she looked different somehow.
Alyssa, my niece, came down from Houston to help us as Dora had to go out of town. Alyssa came in the room and helped me to get Lin in her w/chair. Lin had a small yogurt and her pain pills. She asked to be taken outside to drink her coffee on the patio; she loves the outdooors even now.
When I awoke later in the morning, Lin was already napping on the couch. Allison brought over some "stands" that are made to elevate a bed. We put them under the couch legs and now we can put her on the couch to nap anytime she pleases without issue. She napped until noon. I woke her up enough to give her some more pain medication and she again asked to go outside. She lasted only a few minutes, before she fell asleep again. She napped until 7pm when our good friends Jacque and Sarah came by to bring dinner (Thank You!). Lin was very happy to see Jacque as she had not seen her in a while. She even made a wise crack about her coming all the way from South Austin to see her. We dressed her warmly as she again wanted to go outside. Once she came back in 10 minutes later, she passed out again. She has been sleeping soundly since.
I have to admit that I have not been totally honest here as up to now Lin has been reading the blog. The RN told us yesterday that Lin's body is shutting down. She is not getting much circulation in her legs. Her blood pressure has been high for at least 5 days; prior it had been borderline, it was 140/80 today. Her pulse has been hovering around 104 - 123. The tumors on the head have grown to golf ball size and a little larger. Her heart is working hard to keep her alive.
We will be grateful if she makes it past this week; however, we will be thankful to see an end to her pain. It is hard to want her out of pain as this means that her body will no longer be part of this world, our world, my world. I have lost many people in my life, my Grandma when I was 10, Wally when I was 23, Grandpa earlier that same year, my Uncle Manual a couple of years later and my Dad when I was 36. These were people who were in my life daily for many years. I have only been with Lin, known her for 9 years, however, it seems like a lifetime. I cannot fathom what is to come next.
As I sit in the office, it overlooks the pool and the backyard. I wondered earlier how I will manage. She is the one that maintained the pool daily and watered her beloved potted plants, there must be 50 of them. She usually talked me into building her a "temporary" green house each year around this time. Each day when I would come home from work she would be outside with her dogs, stereo playing some type of rock music and she would have a water hose in hand, watering plants, putting water in the pool or cleaning leaves from around the patio, or just sitting talking on the phone with her sister Marlene or mother Julie.
Earlier this week Lin, Julie and I spoke about funeral arrangements. She wants to be cremated. We all found an urn on-line, it is so her. Blue with silver seagulls flying home. The larger one will stay in Austin, and a smaller replica will go with her mother to buried with her father in Canada. Martie has been so helpful, she is checking into funeral homes and the likes for me.
When my grandma died, I felt a great sense of loss for many years. She was my rock, my port in a storm. I could always go to grandma for help and protection. I laid in bed with Lin today and I was overwhelmed with an even greater sense of loss as she is my best friend, confidant, my love; she owns my heart. She has not been with us for several days. There are minutes of clarity but mostly incoherent muttering that is hard to understand. I feel as I have been losing pieces of her with each passing day. Although her body is still present, I think her soul has already started to pass.
In one of her clear moments today she told me that a blue bird keeps coming to visit her when she is outside. She says that it is her dad coming to be with her. I told her that she should fly away with her dad if that is what she feels. I think she is waiting for her sister to come back tomorrow from Canada, to say goodbye.
I have the baby monitor in the office with me so I can write tonight. I can hear the oxygen machine humming, the sounds of the ocean and seagulls from a CD and I can hear her gasp for air about every thirty seconds.
I heard this song earlier today and thought of Lin (Artist : Tim McGraw Title : Live Like You Were Dying)
He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
how's it hit you when you get that kinda news
man what'd you do and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness I'd been denying
and he said someday I hope you get the chance
to live like you were dying.
I can't believe that last night she was awake and talking to us just like any other day in the past. She was more of a comedian that she has ever been, really funny. Yesterday, she slept from noon to 7:30pm, no one had to prod her to take a nap as in the past, which is usually the case.
I awoke this morning to the sound of her voice calling me to take her to the bathroom. We did our normal routine. I left her to do her business and walked to the front door to let in the sunshine. The season has transformed from summer to autumn, with gloomy skies and cold air blowing. I closed the door rapidly and went back to check on Lin, she looked different somehow.
Alyssa, my niece, came down from Houston to help us as Dora had to go out of town. Alyssa came in the room and helped me to get Lin in her w/chair. Lin had a small yogurt and her pain pills. She asked to be taken outside to drink her coffee on the patio; she loves the outdooors even now.
When I awoke later in the morning, Lin was already napping on the couch. Allison brought over some "stands" that are made to elevate a bed. We put them under the couch legs and now we can put her on the couch to nap anytime she pleases without issue. She napped until noon. I woke her up enough to give her some more pain medication and she again asked to go outside. She lasted only a few minutes, before she fell asleep again. She napped until 7pm when our good friends Jacque and Sarah came by to bring dinner (Thank You!). Lin was very happy to see Jacque as she had not seen her in a while. She even made a wise crack about her coming all the way from South Austin to see her. We dressed her warmly as she again wanted to go outside. Once she came back in 10 minutes later, she passed out again. She has been sleeping soundly since.
I have to admit that I have not been totally honest here as up to now Lin has been reading the blog. The RN told us yesterday that Lin's body is shutting down. She is not getting much circulation in her legs. Her blood pressure has been high for at least 5 days; prior it had been borderline, it was 140/80 today. Her pulse has been hovering around 104 - 123. The tumors on the head have grown to golf ball size and a little larger. Her heart is working hard to keep her alive.
We will be grateful if she makes it past this week; however, we will be thankful to see an end to her pain. It is hard to want her out of pain as this means that her body will no longer be part of this world, our world, my world. I have lost many people in my life, my Grandma when I was 10, Wally when I was 23, Grandpa earlier that same year, my Uncle Manual a couple of years later and my Dad when I was 36. These were people who were in my life daily for many years. I have only been with Lin, known her for 9 years, however, it seems like a lifetime. I cannot fathom what is to come next.
As I sit in the office, it overlooks the pool and the backyard. I wondered earlier how I will manage. She is the one that maintained the pool daily and watered her beloved potted plants, there must be 50 of them. She usually talked me into building her a "temporary" green house each year around this time. Each day when I would come home from work she would be outside with her dogs, stereo playing some type of rock music and she would have a water hose in hand, watering plants, putting water in the pool or cleaning leaves from around the patio, or just sitting talking on the phone with her sister Marlene or mother Julie.
Earlier this week Lin, Julie and I spoke about funeral arrangements. She wants to be cremated. We all found an urn on-line, it is so her. Blue with silver seagulls flying home. The larger one will stay in Austin, and a smaller replica will go with her mother to buried with her father in Canada. Martie has been so helpful, she is checking into funeral homes and the likes for me.
When my grandma died, I felt a great sense of loss for many years. She was my rock, my port in a storm. I could always go to grandma for help and protection. I laid in bed with Lin today and I was overwhelmed with an even greater sense of loss as she is my best friend, confidant, my love; she owns my heart. She has not been with us for several days. There are minutes of clarity but mostly incoherent muttering that is hard to understand. I feel as I have been losing pieces of her with each passing day. Although her body is still present, I think her soul has already started to pass.
In one of her clear moments today she told me that a blue bird keeps coming to visit her when she is outside. She says that it is her dad coming to be with her. I told her that she should fly away with her dad if that is what she feels. I think she is waiting for her sister to come back tomorrow from Canada, to say goodbye.
I have the baby monitor in the office with me so I can write tonight. I can hear the oxygen machine humming, the sounds of the ocean and seagulls from a CD and I can hear her gasp for air about every thirty seconds.
I heard this song earlier today and thought of Lin (Artist : Tim McGraw Title : Live Like You Were Dying)
He said I was in my early forties
with a lot of life before me
when a moment came that stopped me on a dime
and I spent most of the next days
looking at the x-rays
Talking bout the options
and talking bout sweet time
I asked him when it sank in
that this might really be the real end
how's it hit you when you get that kinda news
man what'd you do and he said
I went sky diving
I went Rocky Mountain climbing
I went 2.7 seconds on a bull named fumanchu
and I loved deeper and I spoke sweeter
and I gave forgiveness I'd been denying
and he said someday I hope you get the chance
to live like you were dying.
Monday, October 20, 2008
Transformations
It is astonishing to me how much can take place inside of 24 hours. My family came over to cook and spend time with Lin, her Mom and me. Allison made a special delivery of dinner for Monday with desert. Bonnie, our weekday RN provided me with some new news.
Marti, her daughter from New Mexico, Felisha, Marti's son Art, his wife Erin, their son Alex, Dora, Eric, his wife Lori, their son Corbin, Julie, Lin and I all got together for supper. All the girls cooked up a storm, BBQ chicken, sausage, pasta salad, home-made beans, brisket, peach and blueberry cobbler, etc. There was enough food for what seemed an army. Everyone showed up around 4pm; Lin was already exhausted. She wanted everyone at the house, however tired she was. Dora got a plate of food to her, next thing you know Lin is feeding herself a helping of cobbler and ice cream, she skipped the main meal and went straight for the sugar.
Lin legs started hurting more than usual on Saturday. By Sunday they were aching her. This is being caused by the pressure on the nerve endings on her spine. She says it feels like someone is repeatedly stabbing her legs. The amount of oral morphine has increased. The amount of time that she is cognizant has decreased. By 8pm each night she has checked out. She will wake a couple of times throughout the night and in need of pain meds although the schedule calls for 8am dosages. I supplement oral morphine until I am able to give her the normal dosage of medications. I wish I had more training in this but it is pretty much play by ear and take some calculated risks. I call the RN on call if I am really struggling with what to do.
This morning I woke her early to give her oral morphine and she needed to go to the bathroom. Her knees are so banged up, they stay black and blue; her forearms along the bottom side have the same problem. In order to transfer her from the chair to the toilet she must pull herself up and spin around. With the power leaving her legs, they sometimes buckle and she hits her knees on the front of the toilet. Once she is ready to leave she must put all her weight on forearms to pull herself up and complete a reversal of the procedure once again. This is the same process each time she is ready to transfer to chair, bed, etc. This morning proved to be very taxing on her and she ran out of energy by noon.
When the RN came by today. She put in an order for an oxygen tank and a wheelchair sling.
I warmed up the Shepard's pie that Allison made us. What a treat, we all enjoyed it! Art came over to help me figure out how to use the hoist (the equipment usually is delivered and you have to figure out how to use it all). The first sling we put Lin into, did not work. She started slipping through the opening intended for use in the restroom!! The second one was smaller and worked better, however the harness used for the legs was causing her discomfort as it was digging into her from behind the knees. Marti brought over her sewing machine to make some padded covers, they worked like a charm. Dora and Julie swung into high gear to modify some of Lin's night wear so we can more readily use the new tool. It was like Santa's workshop.
The sling is allowing us to move Lin from the w/chair to another location by placing her on sling and then lift her on a hydraulic hoist and move her suspended in the air, kind of like a chair hammock on wheels. I put the oxygen on her tonight. Everything is changing so fast. It has been only 52 days since we returned from our vacation...all was well then.
Marti, her daughter from New Mexico, Felisha, Marti's son Art, his wife Erin, their son Alex, Dora, Eric, his wife Lori, their son Corbin, Julie, Lin and I all got together for supper. All the girls cooked up a storm, BBQ chicken, sausage, pasta salad, home-made beans, brisket, peach and blueberry cobbler, etc. There was enough food for what seemed an army. Everyone showed up around 4pm; Lin was already exhausted. She wanted everyone at the house, however tired she was. Dora got a plate of food to her, next thing you know Lin is feeding herself a helping of cobbler and ice cream, she skipped the main meal and went straight for the sugar.
Lin legs started hurting more than usual on Saturday. By Sunday they were aching her. This is being caused by the pressure on the nerve endings on her spine. She says it feels like someone is repeatedly stabbing her legs. The amount of oral morphine has increased. The amount of time that she is cognizant has decreased. By 8pm each night she has checked out. She will wake a couple of times throughout the night and in need of pain meds although the schedule calls for 8am dosages. I supplement oral morphine until I am able to give her the normal dosage of medications. I wish I had more training in this but it is pretty much play by ear and take some calculated risks. I call the RN on call if I am really struggling with what to do.
This morning I woke her early to give her oral morphine and she needed to go to the bathroom. Her knees are so banged up, they stay black and blue; her forearms along the bottom side have the same problem. In order to transfer her from the chair to the toilet she must pull herself up and spin around. With the power leaving her legs, they sometimes buckle and she hits her knees on the front of the toilet. Once she is ready to leave she must put all her weight on forearms to pull herself up and complete a reversal of the procedure once again. This is the same process each time she is ready to transfer to chair, bed, etc. This morning proved to be very taxing on her and she ran out of energy by noon.
When the RN came by today. She put in an order for an oxygen tank and a wheelchair sling.
I warmed up the Shepard's pie that Allison made us. What a treat, we all enjoyed it! Art came over to help me figure out how to use the hoist (the equipment usually is delivered and you have to figure out how to use it all). The first sling we put Lin into, did not work. She started slipping through the opening intended for use in the restroom!! The second one was smaller and worked better, however the harness used for the legs was causing her discomfort as it was digging into her from behind the knees. Marti brought over her sewing machine to make some padded covers, they worked like a charm. Dora and Julie swung into high gear to modify some of Lin's night wear so we can more readily use the new tool. It was like Santa's workshop.
The sling is allowing us to move Lin from the w/chair to another location by placing her on sling and then lift her on a hydraulic hoist and move her suspended in the air, kind of like a chair hammock on wheels. I put the oxygen on her tonight. Everything is changing so fast. It has been only 52 days since we returned from our vacation...all was well then.
Sunday, October 19, 2008
Sunday, again.
Time seems to fly these days. Fran packed up and whisked away after a short visit. I went to the doctor's office for my own personal health issues. Lin had two uneventful showers. My sister Dora arrived to help out, she will be with us for a while. Lin and her mom were picked up for a tea and lunch. TK volunteered to watch Lin so Art could over to help me mend the fence and a couple of items that I have not been able to get to for while; we have an escape artist, Chickl'e. Marti came over, put down the top on the Mustang and kidnapped Lin's mom for a half day of shopping as she had not been out since she arrived. Lin received a beautiful bouquet of spring flowers and a magnificent gift certificate from my BA team! Betty came in last night and prepared one of Lin's favorite meals. JJ and Karen came over to join us for dinner - whew, just writing this makes me tired!
My sister Dora has generously volunteered to stay with us for as long as we need her help. I know this is a burden for her as she has her own life to live. Everyone has been so kind it still amazes us.
Linda came by to pick up Lin and Julie for tea and lunch. It took us a while to get her in the car, but she was able to enjoy a couple of hours with Linda, her husband and TK. She was worn out after two hours and had to come home. Lin spoke of the outing several times after she came home. She loved the style of Linda's home, said it reminded her of our favorite B&B at south Padre, Casa de Siesta.
TK stayed with Lin most of the day yesterday as Art helped me to mend our fence. We had to remove pickets to secure the railing to the fence posts with long threaded lag bolts. I think if a strong wind were to blow, it would have tipped over. You invest allot of money on a fence, however, you don't always get what you pay for. Thank you Art for helping me to secure the fence.
I am astounded by the amount of time that it takes to watch over Lin, still. Between transferring from her w-chair to the couch, to the recliner, to the bathroom, to the bed, outside, get her drinks, clothe her, give her meds, etc.; we cannot leave her alone. She does not have the strength to move under her own power so she is at our mercy to get her where she wants to go. I can only imagine how this affects her. TK - thank you for "sitting" with Lin yesterday.
Chickl'e raised a scuttle yesterday while we were working on the fence; that usually means that someone is at the front door. We received a lovely bouquet of flowers from my work team. What was even more surprising was when we went to open the card, we found a gift certificate from "Eat out In". It was our 8th anniversary of our Holy Union when we found out that the cancer was back. Needless to say, we did not celebrate. My sisters and TK announced yesterday that they will set our dining table and order us a nice meal so we can have a late celebration of our anniversary. Thank you BA TEAM, you have enabled a great memory!
My sister Betty came over last night and made Lin her favorite chicken recipe. The outing for lunch really wore Lin out the day before. I tried in vein to feed her the meal, but she kept falling asleep. She was awake enough to open her eyes fully when Dora made a deal with her though. Eat two more bites of chicken and she could have spice cake with cream cheese topping (thank you Suzanne!). Lin was like a little kid that had just been given the deal of the century. She took a few more bites, but fell asleep before the cake arrived. She woke up enough to insist that she have her cake. Well her mom got a kick out of trying to feed her cake. She had it all over the place! We put Lin to bed shortly thereafter. JJ and Karen came over and were discussing there impending wedding next Saturday. They look so cute together.
Betty stayed the night and made us breakfast. Lin awoke fully alert and ate all of her breakfast. We had a better morning, as I awoke at 7:00 to feed her morphine until she could have her scheduled dose of slow releasing morphine at 8:00. I think the secret is to keep the feeding her very small doses when she is active so that her pain does not spike. Once it does it is very hard to control.
It is noon and I am still in my PJs, again. I was finally able to take a shower last night at 1:00 am. Lin woke up at midnight and wanted to drink hot tea; timing is everything, this was when I was headed for the shower. More later tonight, Allison is on her way over...
My sister Dora has generously volunteered to stay with us for as long as we need her help. I know this is a burden for her as she has her own life to live. Everyone has been so kind it still amazes us.
Linda came by to pick up Lin and Julie for tea and lunch. It took us a while to get her in the car, but she was able to enjoy a couple of hours with Linda, her husband and TK. She was worn out after two hours and had to come home. Lin spoke of the outing several times after she came home. She loved the style of Linda's home, said it reminded her of our favorite B&B at south Padre, Casa de Siesta.
TK stayed with Lin most of the day yesterday as Art helped me to mend our fence. We had to remove pickets to secure the railing to the fence posts with long threaded lag bolts. I think if a strong wind were to blow, it would have tipped over. You invest allot of money on a fence, however, you don't always get what you pay for. Thank you Art for helping me to secure the fence.
I am astounded by the amount of time that it takes to watch over Lin, still. Between transferring from her w-chair to the couch, to the recliner, to the bathroom, to the bed, outside, get her drinks, clothe her, give her meds, etc.; we cannot leave her alone. She does not have the strength to move under her own power so she is at our mercy to get her where she wants to go. I can only imagine how this affects her. TK - thank you for "sitting" with Lin yesterday.
Chickl'e raised a scuttle yesterday while we were working on the fence; that usually means that someone is at the front door. We received a lovely bouquet of flowers from my work team. What was even more surprising was when we went to open the card, we found a gift certificate from "Eat out In". It was our 8th anniversary of our Holy Union when we found out that the cancer was back. Needless to say, we did not celebrate. My sisters and TK announced yesterday that they will set our dining table and order us a nice meal so we can have a late celebration of our anniversary. Thank you BA TEAM, you have enabled a great memory!
My sister Betty came over last night and made Lin her favorite chicken recipe. The outing for lunch really wore Lin out the day before. I tried in vein to feed her the meal, but she kept falling asleep. She was awake enough to open her eyes fully when Dora made a deal with her though. Eat two more bites of chicken and she could have spice cake with cream cheese topping (thank you Suzanne!). Lin was like a little kid that had just been given the deal of the century. She took a few more bites, but fell asleep before the cake arrived. She woke up enough to insist that she have her cake. Well her mom got a kick out of trying to feed her cake. She had it all over the place! We put Lin to bed shortly thereafter. JJ and Karen came over and were discussing there impending wedding next Saturday. They look so cute together.
Betty stayed the night and made us breakfast. Lin awoke fully alert and ate all of her breakfast. We had a better morning, as I awoke at 7:00 to feed her morphine until she could have her scheduled dose of slow releasing morphine at 8:00. I think the secret is to keep the feeding her very small doses when she is active so that her pain does not spike. Once it does it is very hard to control.
It is noon and I am still in my PJs, again. I was finally able to take a shower last night at 1:00 am. Lin woke up at midnight and wanted to drink hot tea; timing is everything, this was when I was headed for the shower. More later tonight, Allison is on her way over...
Wednesday, October 15, 2008
Little things mean allot.
It has been unusually quiet for the last two days. It has allowed for us to reflect and to actually have a little fun.
Since the install of the rails in the bathroom, transferring Lin on and off the wheelchair has been a godsend. The tumor in her back is situated such that no matter how hard we tried, each attempt to aid her in the past, we would hurt her. The rails have been a wonderful addition to the regiment of artillery against her pain!
Lin got a hair cut on Monday. Joe, her hairdresser of thirteen years, came to house on his day off and cut and styled her hair. It is the same hair cut she has had for years, only shorter. We figured it would be allot easier to maintain. She looks really cute and sexy with short hair, Katrina confirmed it last night when she visited.
We figured out how to rig up the couch so she can lay in it. It had been her favorite spot to take a nap in the past, however, it recently had proven to be too low to allow a smooth transition. We took the cushions from the outdoor couch and and padded the living room couch. The cushions were Fran's idea, Lin's sister. We held them together with a sheet. She has been able to nap and rest peacefully as she had in the past, Prada and Chickl'e at her side, of course.
Fran cooked up a storm while she was here; it was a nice break for Julie as she has continued to address most of the household chores. Julie loves to wash! Each time I put away a load of clothes, another awaits me. Fran made a great lasagna last night, I even had seconds. Marti joined us for a late supper and brought over a bottle of wine that she and Fran shared. Lin has taken to Soy milk. She swears that it is a miracle drug. When she had radiation it had a negative effect on her esophagus and caused her to have bad heart burn each time she attempted to eat. She now enjoys a glass of soy milk with each meal and has been able to join us at meal time at the table.
Lin has had problems adjusting to the loss of use of her legs. She was saying the other day that you really can't appreciate how much you depend on them until you are no longer able to depend on them. She has her days when they are strong and she is happy, then there are the days that they are basically jello and useless...these are the days that a strong back and arms come in handy, but mostly an empathic ear.
I was able to spend the night upstairs the other night while Fran took the night shift from me. It felt good to sleep the night without waking every few hours. Last night I fumbled on the medicine. Marlene had been working as my quality check and she left for Canada already and Fran was too new onto the job. Well Lin usually gets two Ambien a night that she takes broken out so she can sleep throughout the night.
Lin fell asleep in the living room, 9:30 pm. Marti, Fran, Julie and I were talking about our day. Lin kept waking up and apologizing for falling asleep on us. Her norm lately has been to go to bed at 1:30 am. Each time she would wake up, she would take a circus peanut (those orange looking candies that are made from all sugar) and attempt to eat it; however, most often she would fall asleep again. She had us laughing with each new attempt. She woke up enough to become a comedian and placed two halves of the peanuts strategically on her chest. We laughed even more (see pictures). We finally talked her into going to bed early.
I went to check the medicine bin that I prepare almost daily with all her "cocktails". The two Ambien were missing! I forgot that they had changed the prescription to generic and the color of the pills had changed from white to yellow, they now looked like the Flexeril she was taking... No wonder she fell asleep! She slept well and only woke up twice in the night. Coincidence? I think not. Maybe...just maybe, we got some intervention...
As I lay there last night and listened to the super sonic train engine roar at a never before heard decibel due to a coma-like induced sleep, it made me think. Lin and I often spoke of how when two people meet it is not really them, but their "representatives" that meet. These "representatives" are kind, generous, and thoughtful; they don't fart, burp, have any bad manners, always say thank you and please. You used to know one, right? Then you move in together and the things that you used to think were sweet, you remember, "isn't it cute, you snore at night", now become the things that start to get on your nerves.
I laid in bed and pondered a future where the room is pitch dark and there is no snoring in the room, except, maybe only my own. I put in the ear plugs and was still lulled to sleep by the sound of Lin's rhythmic snoring, a sound I truly appreciate once again.
Since the install of the rails in the bathroom, transferring Lin on and off the wheelchair has been a godsend. The tumor in her back is situated such that no matter how hard we tried, each attempt to aid her in the past, we would hurt her. The rails have been a wonderful addition to the regiment of artillery against her pain!
Lin got a hair cut on Monday. Joe, her hairdresser of thirteen years, came to house on his day off and cut and styled her hair. It is the same hair cut she has had for years, only shorter. We figured it would be allot easier to maintain. She looks really cute and sexy with short hair, Katrina confirmed it last night when she visited.
We figured out how to rig up the couch so she can lay in it. It had been her favorite spot to take a nap in the past, however, it recently had proven to be too low to allow a smooth transition. We took the cushions from the outdoor couch and and padded the living room couch. The cushions were Fran's idea, Lin's sister. We held them together with a sheet. She has been able to nap and rest peacefully as she had in the past, Prada and Chickl'e at her side, of course.
Fran cooked up a storm while she was here; it was a nice break for Julie as she has continued to address most of the household chores. Julie loves to wash! Each time I put away a load of clothes, another awaits me. Fran made a great lasagna last night, I even had seconds. Marti joined us for a late supper and brought over a bottle of wine that she and Fran shared. Lin has taken to Soy milk. She swears that it is a miracle drug. When she had radiation it had a negative effect on her esophagus and caused her to have bad heart burn each time she attempted to eat. She now enjoys a glass of soy milk with each meal and has been able to join us at meal time at the table.
Lin has had problems adjusting to the loss of use of her legs. She was saying the other day that you really can't appreciate how much you depend on them until you are no longer able to depend on them. She has her days when they are strong and she is happy, then there are the days that they are basically jello and useless...these are the days that a strong back and arms come in handy, but mostly an empathic ear.
I was able to spend the night upstairs the other night while Fran took the night shift from me. It felt good to sleep the night without waking every few hours. Last night I fumbled on the medicine. Marlene had been working as my quality check and she left for Canada already and Fran was too new onto the job. Well Lin usually gets two Ambien a night that she takes broken out so she can sleep throughout the night.
Lin fell asleep in the living room, 9:30 pm. Marti, Fran, Julie and I were talking about our day. Lin kept waking up and apologizing for falling asleep on us. Her norm lately has been to go to bed at 1:30 am. Each time she would wake up, she would take a circus peanut (those orange looking candies that are made from all sugar) and attempt to eat it; however, most often she would fall asleep again. She had us laughing with each new attempt. She woke up enough to become a comedian and placed two halves of the peanuts strategically on her chest. We laughed even more (see pictures). We finally talked her into going to bed early.
I went to check the medicine bin that I prepare almost daily with all her "cocktails". The two Ambien were missing! I forgot that they had changed the prescription to generic and the color of the pills had changed from white to yellow, they now looked like the Flexeril she was taking... No wonder she fell asleep! She slept well and only woke up twice in the night. Coincidence? I think not. Maybe...just maybe, we got some intervention...
As I lay there last night and listened to the super sonic train engine roar at a never before heard decibel due to a coma-like induced sleep, it made me think. Lin and I often spoke of how when two people meet it is not really them, but their "representatives" that meet. These "representatives" are kind, generous, and thoughtful; they don't fart, burp, have any bad manners, always say thank you and please. You used to know one, right? Then you move in together and the things that you used to think were sweet, you remember, "isn't it cute, you snore at night", now become the things that start to get on your nerves.
I laid in bed and pondered a future where the room is pitch dark and there is no snoring in the room, except, maybe only my own. I put in the ear plugs and was still lulled to sleep by the sound of Lin's rhythmic snoring, a sound I truly appreciate once again.
Sunday, October 12, 2008
Open mouth ... insert BIG FOOT!
The morning started out perfect. Lin got up only a couple of times last night. We made it through the night with minimum of added morphine and I crawled into her hospital bed in the wee hours of the morning. Waking up next to Lin was great.
The day was even greater because she experienced no falls the day prior. Instead, she went to the airport to drop off Marlene to send her on her way back to Canada. No, she did not drive. Allison had volunteered to drive Marlene to the airport. With help from Art and me we got Lin into the truck, buckled her down, gave her some morphine and packed a bag of additional meds for her in case she needed them. They made it to Austin without incidence. She got to stay with her little sister until the last minute.
When they got home, Art pulled her out of the truck seat and we were able to get back in our home safely. Art and I had stayed home and managed to go to Home Depot and Lowe's only three times in two days as we placed the safety bars in the bathroom. This was no easy task. How do we place them, what makes sense, is there a 2x4 behind the wall....no there wasn't.
Well Lin got to test the install in the bathroom on her return, what a difference the right equipment can make. They worked wonderfully! Not because we did the work, but because she is able to help with transfers and we do not hurt her.
Sunday got even better. We got out of bed late, that was really nice. Teresa called from California, she is an old friend of Lin's from earlier 1980; it made her day. I made migas for the Canadian clan and we had a nice late brunch.
I got to get out for the first time in weeks! Lin had gotten a massage gift card from Mark and Genny for her birthday in January and had not used it yet. Marti came over to sit with Lin so I got to use the card to get a massage and boy did it feel great! Thank you Mark and Genny!
When I returned, Mark, Genny and Taylor were visiting. They brought over a nice chicken noodle soup. It was great; we had it for supper with a salad.
Today was an unusual day, much like Saturday. There were no major events scheduled or any that occurred by accident. Julie, Lin's Mom and myself were surprised at how quiet the day occurred.
We were sitting and watching television tonight. Lin made a comment about wasting time and not doing all the things that she had planned. Things like using the paint set she had and learning to play the guitar she has upstairs. Without thinking I made a very sarcastic and insensitive remark about how she could better use her time. Well shove a truck load of something in my mouth, I can never apologize enough for the stupid remark. Believe me, I tried.
We are now living a different life and what I say today, I may not be able to make up for it or change it tomorrow. I find myself thinking like I used to do. The cancer has robbed us of time. I have to change the way that I think, this is hard. We cannot plan past tomorrow, we have to live in the here, the now, today. I always thought that we would grow old together; reality has changed that. If I could change what I said today, the day would have been perfect. ...if I could change whatever caused the cancer to develop or to spread, then we could buy that condo by the beach and grow old together, now that would be perfect.
The day was even greater because she experienced no falls the day prior. Instead, she went to the airport to drop off Marlene to send her on her way back to Canada. No, she did not drive. Allison had volunteered to drive Marlene to the airport. With help from Art and me we got Lin into the truck, buckled her down, gave her some morphine and packed a bag of additional meds for her in case she needed them. They made it to Austin without incidence. She got to stay with her little sister until the last minute.
When they got home, Art pulled her out of the truck seat and we were able to get back in our home safely. Art and I had stayed home and managed to go to Home Depot and Lowe's only three times in two days as we placed the safety bars in the bathroom. This was no easy task. How do we place them, what makes sense, is there a 2x4 behind the wall....no there wasn't.
Well Lin got to test the install in the bathroom on her return, what a difference the right equipment can make. They worked wonderfully! Not because we did the work, but because she is able to help with transfers and we do not hurt her.
Sunday got even better. We got out of bed late, that was really nice. Teresa called from California, she is an old friend of Lin's from earlier 1980; it made her day. I made migas for the Canadian clan and we had a nice late brunch.
I got to get out for the first time in weeks! Lin had gotten a massage gift card from Mark and Genny for her birthday in January and had not used it yet. Marti came over to sit with Lin so I got to use the card to get a massage and boy did it feel great! Thank you Mark and Genny!
When I returned, Mark, Genny and Taylor were visiting. They brought over a nice chicken noodle soup. It was great; we had it for supper with a salad.
Today was an unusual day, much like Saturday. There were no major events scheduled or any that occurred by accident. Julie, Lin's Mom and myself were surprised at how quiet the day occurred.
We were sitting and watching television tonight. Lin made a comment about wasting time and not doing all the things that she had planned. Things like using the paint set she had and learning to play the guitar she has upstairs. Without thinking I made a very sarcastic and insensitive remark about how she could better use her time. Well shove a truck load of something in my mouth, I can never apologize enough for the stupid remark. Believe me, I tried.
We are now living a different life and what I say today, I may not be able to make up for it or change it tomorrow. I find myself thinking like I used to do. The cancer has robbed us of time. I have to change the way that I think, this is hard. We cannot plan past tomorrow, we have to live in the here, the now, today. I always thought that we would grow old together; reality has changed that. If I could change what I said today, the day would have been perfect. ...if I could change whatever caused the cancer to develop or to spread, then we could buy that condo by the beach and grow old together, now that would be perfect.
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