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.
Wednesday, October 15, 2008
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.
Friday, October 10, 2008
Third time is a charm?
It seems that each day, we experience some drama, maybe that is too bit of a strong adjective, but something is always happening.
I am so tired that I cannot remember what events took place yesterday. Oh, yes... Lin was feeling pretty good, so I left her with her mom and sister, Marlene. I went shopping. We needed basic supplies and I needed to go to the bank. When I got back Marlene confided in me that Lin had asked her not to tell me, however, Lin had experienced a fall again.
Lin had asked to sit outside, but was using her walker. Her legs act like jello allot and I almost have to force her into the wheelchair. Well she was trying to get up from her chair when her legs gave out. We usually insist that someone walk behind her. Marlene managed to catch her by her shirt and shorts and Lin got some cushion as she fell to her knees. Of course she was almost choked in the process, but she survived the fall.
The nurses aid came in today to give Lin her shower. I was sitting in the office working on a new spread sheet as her meds had changed again and I needed to put together a new schedule. We are juggling 15 different meds right now. I usually take the baby monitor with me where ever I go in the house (thank you Eric and Lori for the idea).
I was pecking away at the medical jargon, when I hear a shout through the speaker. I ran through the house and arrived at the second shout. I must have had a look of shock on face. Lin told me to take a breathe and help her up. She was getting dried off when she slipped on the bath mat in the shower. She fell with her foot twisted under her; the aid panicked and had backed out of the shower; it was she that had hollered for help. Lin managed to pull her leg out from under her.
When I saw her, she was sitting like a little rag doll in the corner of the shower, hands and legs at her sides. I immediately yelled for Marlene to help me, the aid was in shock. We managed to get Lin to her knees first and then onto the shower chair. She twisted her ankle badly. We are taking a picture of butt and posting to see who can win a contest. Who can name what Lin fell onto as it is now imprinted as bruise on the butt, it looks like a tattoo?
She is now committed to using the wheelchair.
Her sister Fran flew in from Canada today. Marti picked her up from the airport. Lin has been looking forward to her sisters and mom all being under one roof.
I went out and shopped for handicap railing today. I never knew it was so expensive! Art is helping me to figure out how to mount it in the restroom and shower. These should help Lin in her transition from the wheelchair into the shower, etc.
We had a dinner tonight to honor Lin's dad's birthday, Robert. Lin ate pretty well. Compared to last week when we could not get her to eat anything but milk shakes to tonight, it has been a big difference. Last time she was doing chemo for a year, Interferon, the only thing she would eat was two lobster tails every Friday. Tonight she ate some lobster and even a couple of bites of steak. We were all very proud of her. She even ate some German Chocolate cake, her dad's favorite.
It is almost 11pm and time for some personal time to myself.
Oh yeah, the "tattoo" was an imprint of the shower temperature control. As she was falling she grabbed for the handle and the temperature control handle fell off and she landed on it. It made for something for us to laugh about amidst of the apprehension of the accident.
I am so tired that I cannot remember what events took place yesterday. Oh, yes... Lin was feeling pretty good, so I left her with her mom and sister, Marlene. I went shopping. We needed basic supplies and I needed to go to the bank. When I got back Marlene confided in me that Lin had asked her not to tell me, however, Lin had experienced a fall again.
Lin had asked to sit outside, but was using her walker. Her legs act like jello allot and I almost have to force her into the wheelchair. Well she was trying to get up from her chair when her legs gave out. We usually insist that someone walk behind her. Marlene managed to catch her by her shirt and shorts and Lin got some cushion as she fell to her knees. Of course she was almost choked in the process, but she survived the fall.
The nurses aid came in today to give Lin her shower. I was sitting in the office working on a new spread sheet as her meds had changed again and I needed to put together a new schedule. We are juggling 15 different meds right now. I usually take the baby monitor with me where ever I go in the house (thank you Eric and Lori for the idea).
I was pecking away at the medical jargon, when I hear a shout through the speaker. I ran through the house and arrived at the second shout. I must have had a look of shock on face. Lin told me to take a breathe and help her up. She was getting dried off when she slipped on the bath mat in the shower. She fell with her foot twisted under her; the aid panicked and had backed out of the shower; it was she that had hollered for help. Lin managed to pull her leg out from under her.
When I saw her, she was sitting like a little rag doll in the corner of the shower, hands and legs at her sides. I immediately yelled for Marlene to help me, the aid was in shock. We managed to get Lin to her knees first and then onto the shower chair. She twisted her ankle badly. We are taking a picture of butt and posting to see who can win a contest. Who can name what Lin fell onto as it is now imprinted as bruise on the butt, it looks like a tattoo?
She is now committed to using the wheelchair.
Her sister Fran flew in from Canada today. Marti picked her up from the airport. Lin has been looking forward to her sisters and mom all being under one roof.
I went out and shopped for handicap railing today. I never knew it was so expensive! Art is helping me to figure out how to mount it in the restroom and shower. These should help Lin in her transition from the wheelchair into the shower, etc.
We had a dinner tonight to honor Lin's dad's birthday, Robert. Lin ate pretty well. Compared to last week when we could not get her to eat anything but milk shakes to tonight, it has been a big difference. Last time she was doing chemo for a year, Interferon, the only thing she would eat was two lobster tails every Friday. Tonight she ate some lobster and even a couple of bites of steak. We were all very proud of her. She even ate some German Chocolate cake, her dad's favorite.
It is almost 11pm and time for some personal time to myself.
Oh yeah, the "tattoo" was an imprint of the shower temperature control. As she was falling she grabbed for the handle and the temperature control handle fell off and she landed on it. It made for something for us to laugh about amidst of the apprehension of the accident.
Thursday, October 9, 2008
Lin Update 10/9/08
It has been a while since I sent an update. I decided to create a blog to get you all updated and to make it easier for anyone to get the latest on what is happening in our lives. Please feel free forward the site to others who would like an update on Lin.
My last update to you was on 9/15/08; allot has happened since that time. August 18th Lin started started experiencing pain in her upper back that would not subside. By 9/08/08, the pain escalated to an uncontrollable level.
By 9/11/08, diagnosis confirmed metastases of the bladder cancer to include several lymph nodes in her chest cavity, a vertebra (it is also fractured), several spots in both lungs and a couple of growths on her scalp.
The prognosis is not positive as the doctor has communicated that the cancer is not curable, he described the cancer as terminal. There is a possibility that chemo therapy may prolong her life, however, quality of life is not guaranteed.
As Lin most recently spent a week in RR Hospital, she was released into our care with help from Hospice. The team assigned to Lin is very attentive and the R.N. has skillfully brought down her pain level to an tolerable "5" on a pain scale of 10.
We ask for you prayers as Lin is taking the weekend to think through her options of continuing with Hospice or taking the path of chemo. Presently, she has lost about ~50% use of her legs and is using a walker and a wheel chair to get about.
As many of you know Lin is a very independent person, the cancer has been hard on her health, the loss of her legs has been even harder to her independent soul.
I am limiting phone calls and visits as they are very draining of her energy. Please help us by limiting calls or visits from 7:30am - 10:30am (mornings are very hard for her and her nurse usually visits at this time); 2:00pm -3:30pm (nap time); and 8:30 pm or later. I understand that this does not leave a whole lot of time for calls or visits, however, I am greatly concerned with her pain level. I look forward to hearing or seeing you sometime in the near future.
So... calls and visitation are welcome" M-S 10:30am - 1:30pm, 4:00pm - 8:00pm.
As always, we appreciate your support and well wishes. We ask for your continued prayers and good thoughts.
My last update to you was on 9/15/08; allot has happened since that time. August 18th Lin started started experiencing pain in her upper back that would not subside. By 9/08/08, the pain escalated to an uncontrollable level.
By 9/11/08, diagnosis confirmed metastases of the bladder cancer to include several lymph nodes in her chest cavity, a vertebra (it is also fractured), several spots in both lungs and a couple of growths on her scalp.
The prognosis is not positive as the doctor has communicated that the cancer is not curable, he described the cancer as terminal. There is a possibility that chemo therapy may prolong her life, however, quality of life is not guaranteed.
As Lin most recently spent a week in RR Hospital, she was released into our care with help from Hospice. The team assigned to Lin is very attentive and the R.N. has skillfully brought down her pain level to an tolerable "5" on a pain scale of 10.
We ask for you prayers as Lin is taking the weekend to think through her options of continuing with Hospice or taking the path of chemo. Presently, she has lost about ~50% use of her legs and is using a walker and a wheel chair to get about.
As many of you know Lin is a very independent person, the cancer has been hard on her health, the loss of her legs has been even harder to her independent soul.
I am limiting phone calls and visits as they are very draining of her energy. Please help us by limiting calls or visits from 7:30am - 10:30am (mornings are very hard for her and her nurse usually visits at this time); 2:00pm -3:30pm (nap time); and 8:30 pm or later. I understand that this does not leave a whole lot of time for calls or visits, however, I am greatly concerned with her pain level. I look forward to hearing or seeing you sometime in the near future.
So... calls and visitation are welcome" M-S 10:30am - 1:30pm, 4:00pm - 8:00pm.
As always, we appreciate your support and well wishes. We ask for your continued prayers and good thoughts.
Tuesday, October 7, 2008
It wasn't your fault
Marlene and I have been the main care takers. My job has been to stay with Lin at night and figure our all the meds. Marlene's has been to tend to Lin wants during the day and help her Mom, Julie with household stuff.
I was busy after a visit from Bonnie, Lin's new weekday R.N. We had to change all her prescribed meds as I had to give her allot of morphine by mouth, morphine sulfate, numerous times throughout Sunday evening and early Monday morning.
I asked Marlene to help out and help Lin with her shower. We had been fortunate enough to have remodeled our bathroom several years earlier and built a large walk-in shower. Marlene donned her bathing suit and got in the shower to get the water ready. Meanwhile, "independent" Lin decided to get her own clothes out of the closet. The door bell rang, Chickl`e was going crazy as usual. The hospice nurse, director and a training aid had all come to the door. I went to get the dog and move him to the back room when next thing you know, Marlene is screaming and commotion breaks out. Lin fell backward from her walker. She struck her head, right where she had a new growth of a tumor and smacked the hell out of the tumor that sticks out on her back!
Everyone helped and we got her to the her bed. The nurse started with the morphine sulfate and gave her enough to finally knock her out. She slept most of the evening. She was in extreme pain.
My mom, sister Pat, her husband Ray and my sister Marti, all came by to visit. We got Marti to sit with Lin so we could go run some much needed errands.
Marti called, Art had brought over a brisket, beans and tortilla's, we did not need to worry about dinner. This has been a phenomenon, one day we got a happy face balloon and truffles, Allison made us a killer chicken pot pie, Terry and her daughter from down the street brought over a chicken, veggies and a coconut almond cake. Our friends from the corner, Judy and Ron brought over a pot roast and rolls and my reliable neighbor Burt brought us over a six pack of beer when we most needed it badly.
Lin looked to be in awful pain throughout the night. She finally awoke around midnight and wanted to sit in the living room and talk!
I was busy after a visit from Bonnie, Lin's new weekday R.N. We had to change all her prescribed meds as I had to give her allot of morphine by mouth, morphine sulfate, numerous times throughout Sunday evening and early Monday morning.
I asked Marlene to help out and help Lin with her shower. We had been fortunate enough to have remodeled our bathroom several years earlier and built a large walk-in shower. Marlene donned her bathing suit and got in the shower to get the water ready. Meanwhile, "independent" Lin decided to get her own clothes out of the closet. The door bell rang, Chickl`e was going crazy as usual. The hospice nurse, director and a training aid had all come to the door. I went to get the dog and move him to the back room when next thing you know, Marlene is screaming and commotion breaks out. Lin fell backward from her walker. She struck her head, right where she had a new growth of a tumor and smacked the hell out of the tumor that sticks out on her back!
Everyone helped and we got her to the her bed. The nurse started with the morphine sulfate and gave her enough to finally knock her out. She slept most of the evening. She was in extreme pain.
My mom, sister Pat, her husband Ray and my sister Marti, all came by to visit. We got Marti to sit with Lin so we could go run some much needed errands.
Marti called, Art had brought over a brisket, beans and tortilla's, we did not need to worry about dinner. This has been a phenomenon, one day we got a happy face balloon and truffles, Allison made us a killer chicken pot pie, Terry and her daughter from down the street brought over a chicken, veggies and a coconut almond cake. Our friends from the corner, Judy and Ron brought over a pot roast and rolls and my reliable neighbor Burt brought us over a six pack of beer when we most needed it badly.
Lin looked to be in awful pain throughout the night. She finally awoke around midnight and wanted to sit in the living room and talk!
Adjusting to home
Sunday was a day of adjustment. We had a new sleep schedule, and new medicine schedule to administer.
We were talking, but not talking about the obvious. Our lives were changed and would not be the same any longer.
Upon getting home on Saturday, we pulled a wheel chair up to the car to carry Lin in the front door. She then had to maneuver a new walker in order to make her way to our bedroom.
I am still numb. I feel distraught at times and wonder how life will be in a year from now and then I want to slap myself for even thinking in this manner. I just can't think of a life without Lin in it.
Lin's Mom arrived Sunday night.
We were talking, but not talking about the obvious. Our lives were changed and would not be the same any longer.
Upon getting home on Saturday, we pulled a wheel chair up to the car to carry Lin in the front door. She then had to maneuver a new walker in order to make her way to our bedroom.
I am still numb. I feel distraught at times and wonder how life will be in a year from now and then I want to slap myself for even thinking in this manner. I just can't think of a life without Lin in it.
Lin's Mom arrived Sunday night.
This will only hurt a little...
So time has passed and life goes on around us. Lin has continued to feel extreme pain. The tumor in her back is putting pressure on her spine and the fractured vertebra is adding to the pain level. I am sure that if she is to hear, "what is your pain level" once more, she is certain to throw a brick at me... if only she could.
Sunday night, August 29th - I was only night shift with Lin. Marlene, Lin's little sister, flew in from Montreal on the 22nd. We had been trading shifts, this was for who would spend the night with Lin. This was a hard task; wake up every two hours and administer medication so as to keep Lin out of pain. It was on my shift that I could no longer provide medications at the level she required to bring down the pain. I went upstairs at 11:30 pm to let Marlene know that I was giving Lin more medication and outside of the prescribed times, just in case. At 1:30 am, I went back up to get Marlene. I had called the doctor and he had told me to take her to the emergency room.
I called 911 while Marlene convinced Lin that this was the only way to get her some relief. Lin was in the most pain that I have ever seen anyone experience. I know that she is a tough cookie, but this was beyond the realm of anything that I had ever experienced. I could do nothing.
The fire fighters arrived and then the paramedics. They asked all the normal questions. Dave, the guy who was getting all the respect from all those in the room, was asking all the right questions. He proceeded to get on the bed right next to Lin and was talking to her in soothing tones. He proceeded to place an IV in her wrist in record time and began to slowly administer morphine. It took a second shot, but she finally stopped writhing in pain. The rescue team used our bed sheet to transfer her to the gurney, her sister rode in the ambulance with her and I followed in my truck.
We got to the hospital and they gave her Dilaudid, a quick acting pain med. About 4 am, they told us that they would be admitting her soon. We were finally in her room at about 5:30 am. The nurse and the tech were really nice; they gave us a couple of blankets and helped us move a couple of "comfortable" chairs to the room. We laughed and we cried; Lin was knocked out with really powerful drugs.
We stayed with her most of the day; we did not go home as we had no idea what would happen next. They continued to give her pain meds and she looked to be finally resting. I had called upon my good friend Allison and she had spread the word to several of my closest friends that Lin was in the hospital. Allison coordinated with my friends Cara, Genny and Jacque and they all came to visit so we could get some needed rest. Marlene and I headed home when Allison arrived, she was a saving grace as she stayed with Lin for the afternoon as we took a nap. After visiting for some time with Lin, we decided to head home for the night and get some much needed sleep; it had been a long week. We drank tea and took half of an Ambien each. We awoke refreshed.
Day turned to night and night into day, Lin's pain was out of control each morning as the nurses were afraid to go outside of the boundaries ordered by the doctors and still more afraid to call the doctors outside of normal working hours. They would wake her each morning at 6 am to do the normal, blood pressure check, etc and bring breakfast about at 7 am, meds were not due until 9 am on the dot, no leeway. It was painful to see her hurt so badly and not be able to do anything but complain. Finally, after days of worrying and complaining, the charge nurse listened and took action. Marlene and I kept vigil by her bed and got to know one another a little better. My sister Marti, was helpful during this time, even after a full day of work she would find the time to stop by Chick-fill-a to get Lin a vanilla shake. She spent many evenings with us in uncomfortable chairs listening to Lin's morphine driven unconnected thoughts.
Friday was a somber day. The Oncologist told us that the cancer was incurable, several lymph nodes in her chest cavity were now involved, it was definitely in her bone, there were several areas on her lungs and the large bumps on her head were 98% sure of being cancerous. The radiation treatment that she had been receiving daily for two weeks had not worked and they could not explain why. We asked if Hospice was in order; the answer was that it was our choice. Asked and answered. Hospice will only take terminally ill patients with less than 6 months of life. He advised that we could proceed with chemo in hopes that it could shrink the tumors so as to lessen the pain. This was truly a black day. The only light was that she could come home on Saturday.
We called upon Hospice on Friday. They came to the hospital and we made arrangements to bring Lin home on Saturday. Marlene and I scrambled home to start re-arranging furniture and clean the house as that had been our last priority while Lin had been in the hospital. I called upon my nephews Eric and Art to help move furniture and Marti volunteered her services.
We moved our king sized bed upstairs and it occurred to me that the last night that Lin and I spent in our bed had been the night that she was wheeled out the door by strangers. The room was void of most things that has personalized our master suite, Marlene and Marti cleaned everything in site. I was not much help. I think I was in shock, moving slowly, but deliberately. This did not seem real. I was answering calls on four phones, barking off orders (Lin would say that this is what I am best at...), I felt like my body was present and going through he motions, however, my mind was stuck on what would not be.
When Marlene arrived from Canada, one of the first things that she said to me was that she would force me to eat healthy. As we drove through the drive-thru at McDonald's on Saturday morning, I reminded her of those words. Funny how life has a way of taking all your intentions and plans and throwing them in your face sometimes. We could not help but laugh. I wondered later if she got the fish sandwich to prove a point; I got the Big Mac!
When we arrived to take Lin home, she was in tears. The jerk of a doctor "Cole" had pulled her meds 3 hrs earlier to see if she could walk and make her way before he would release her! Was he on drugs? I got the nurse to call him. He was not happy that anyone would question his orders. Boo-hoo! It took two hours, but he finally signed the paperwork needed to get out of there. Hospice had arrived in time to help her to get "some" pain meds. We piled her into her Mustang convertible, threw down the top, turn up Donna Summer (one of Lin's favorite CD's) and cranked up the volume. How she loves to be outdoors; she enjoyed the sunshine!
By the time she made it home her pain level was as if she had never left home on that gurney a week prior, it was at a 10+. Dorthy was her weekend hospice nurse and she was not afraid to administer meds. It took some time, but finally Lin was sleeping.
Sunday night, August 29th - I was only night shift with Lin. Marlene, Lin's little sister, flew in from Montreal on the 22nd. We had been trading shifts, this was for who would spend the night with Lin. This was a hard task; wake up every two hours and administer medication so as to keep Lin out of pain. It was on my shift that I could no longer provide medications at the level she required to bring down the pain. I went upstairs at 11:30 pm to let Marlene know that I was giving Lin more medication and outside of the prescribed times, just in case. At 1:30 am, I went back up to get Marlene. I had called the doctor and he had told me to take her to the emergency room.
I called 911 while Marlene convinced Lin that this was the only way to get her some relief. Lin was in the most pain that I have ever seen anyone experience. I know that she is a tough cookie, but this was beyond the realm of anything that I had ever experienced. I could do nothing.
The fire fighters arrived and then the paramedics. They asked all the normal questions. Dave, the guy who was getting all the respect from all those in the room, was asking all the right questions. He proceeded to get on the bed right next to Lin and was talking to her in soothing tones. He proceeded to place an IV in her wrist in record time and began to slowly administer morphine. It took a second shot, but she finally stopped writhing in pain. The rescue team used our bed sheet to transfer her to the gurney, her sister rode in the ambulance with her and I followed in my truck.
We got to the hospital and they gave her Dilaudid, a quick acting pain med. About 4 am, they told us that they would be admitting her soon. We were finally in her room at about 5:30 am. The nurse and the tech were really nice; they gave us a couple of blankets and helped us move a couple of "comfortable" chairs to the room. We laughed and we cried; Lin was knocked out with really powerful drugs.
We stayed with her most of the day; we did not go home as we had no idea what would happen next. They continued to give her pain meds and she looked to be finally resting. I had called upon my good friend Allison and she had spread the word to several of my closest friends that Lin was in the hospital. Allison coordinated with my friends Cara, Genny and Jacque and they all came to visit so we could get some needed rest. Marlene and I headed home when Allison arrived, she was a saving grace as she stayed with Lin for the afternoon as we took a nap. After visiting for some time with Lin, we decided to head home for the night and get some much needed sleep; it had been a long week. We drank tea and took half of an Ambien each. We awoke refreshed.
Day turned to night and night into day, Lin's pain was out of control each morning as the nurses were afraid to go outside of the boundaries ordered by the doctors and still more afraid to call the doctors outside of normal working hours. They would wake her each morning at 6 am to do the normal, blood pressure check, etc and bring breakfast about at 7 am, meds were not due until 9 am on the dot, no leeway. It was painful to see her hurt so badly and not be able to do anything but complain. Finally, after days of worrying and complaining, the charge nurse listened and took action. Marlene and I kept vigil by her bed and got to know one another a little better. My sister Marti, was helpful during this time, even after a full day of work she would find the time to stop by Chick-fill-a to get Lin a vanilla shake. She spent many evenings with us in uncomfortable chairs listening to Lin's morphine driven unconnected thoughts.
Friday was a somber day. The Oncologist told us that the cancer was incurable, several lymph nodes in her chest cavity were now involved, it was definitely in her bone, there were several areas on her lungs and the large bumps on her head were 98% sure of being cancerous. The radiation treatment that she had been receiving daily for two weeks had not worked and they could not explain why. We asked if Hospice was in order; the answer was that it was our choice. Asked and answered. Hospice will only take terminally ill patients with less than 6 months of life. He advised that we could proceed with chemo in hopes that it could shrink the tumors so as to lessen the pain. This was truly a black day. The only light was that she could come home on Saturday.
We called upon Hospice on Friday. They came to the hospital and we made arrangements to bring Lin home on Saturday. Marlene and I scrambled home to start re-arranging furniture and clean the house as that had been our last priority while Lin had been in the hospital. I called upon my nephews Eric and Art to help move furniture and Marti volunteered her services.
We moved our king sized bed upstairs and it occurred to me that the last night that Lin and I spent in our bed had been the night that she was wheeled out the door by strangers. The room was void of most things that has personalized our master suite, Marlene and Marti cleaned everything in site. I was not much help. I think I was in shock, moving slowly, but deliberately. This did not seem real. I was answering calls on four phones, barking off orders (Lin would say that this is what I am best at...), I felt like my body was present and going through he motions, however, my mind was stuck on what would not be.
When Marlene arrived from Canada, one of the first things that she said to me was that she would force me to eat healthy. As we drove through the drive-thru at McDonald's on Saturday morning, I reminded her of those words. Funny how life has a way of taking all your intentions and plans and throwing them in your face sometimes. We could not help but laugh. I wondered later if she got the fish sandwich to prove a point; I got the Big Mac!
When we arrived to take Lin home, she was in tears. The jerk of a doctor "Cole" had pulled her meds 3 hrs earlier to see if she could walk and make her way before he would release her! Was he on drugs? I got the nurse to call him. He was not happy that anyone would question his orders. Boo-hoo! It took two hours, but he finally signed the paperwork needed to get out of there. Hospice had arrived in time to help her to get "some" pain meds. We piled her into her Mustang convertible, threw down the top, turn up Donna Summer (one of Lin's favorite CD's) and cranked up the volume. How she loves to be outdoors; she enjoyed the sunshine!
By the time she made it home her pain level was as if she had never left home on that gurney a week prior, it was at a 10+. Dorthy was her weekend hospice nurse and she was not afraid to administer meds. It took some time, but finally Lin was sleeping.
Monday, October 6, 2008
Emergency 911
I flew home on September 11, 2008. I was in Nashua, New Hampshire on business when I got the call from my sister Dora, who had been staying home with Lin while I worked out of town. Lin was taken to the hospital by my friend Allison on the day I left town. She had not told me her pain level was as high as it was when I left for Chicago. The emergency room doctor referred her to an Oncologist, she was to see him in two days.
When Dora called me, I asked to speak to Lin. It was the worst that I had ever heard her, even after her reconstructive surgery. I hurried to the hotel, my flight was out of Boston in three hours, it would take me 30 minutes to drive there. I stuffed my suitcase and busted the zipper! I found the nearest Sears and changed out suitcases in the parking lot, got allot of weird looks. By this time, I was not going to make my flight. I called the American Express agent and explained my situation to her. Mind you hurricane Rita is on the way and airports are starting to cancel flights. I made it to the airport with an hour to spare and I got back to Austin by 8 PM.
The Oncologist had already told Lin the cancer had metastasized, spread, it was in her lymph nodes, one vertebrae which was fractured and her lungs.
I thought that this was the worst it could be. The emotions ran high. Thoughts of our future together, dreams and plans that we had planned all rolled into one and exploded as the realization that some of these would not come to fruition.
I worked from home for a couple of days, as my sister Dora helped with wash and errands. I soon figured out, this was a two plus person job. I would not be able to burn the candle at both ends as she required help 24/7.
At the same time my migraine headaches have increased in intensity and I now require additional medication to get them under control. The stress of this all is not helping. I also have started taking Cymbalta for depression; I look forward to that kicking in.
So now the work begins at home.
My sister, Dora and I began with care of Lin, however, her pain level continued to increase in her back. She described it like someone hitting her across her back with a baseball bat; a tumor lies between her shoulder blades on her vertebrae.
I called Lin's sister Marlene. Lin seemed to be going downhill fast and thought that having someone in her family around would help her spirits.
When Dora called me, I asked to speak to Lin. It was the worst that I had ever heard her, even after her reconstructive surgery. I hurried to the hotel, my flight was out of Boston in three hours, it would take me 30 minutes to drive there. I stuffed my suitcase and busted the zipper! I found the nearest Sears and changed out suitcases in the parking lot, got allot of weird looks. By this time, I was not going to make my flight. I called the American Express agent and explained my situation to her. Mind you hurricane Rita is on the way and airports are starting to cancel flights. I made it to the airport with an hour to spare and I got back to Austin by 8 PM.
The Oncologist had already told Lin the cancer had metastasized, spread, it was in her lymph nodes, one vertebrae which was fractured and her lungs.
I thought that this was the worst it could be. The emotions ran high. Thoughts of our future together, dreams and plans that we had planned all rolled into one and exploded as the realization that some of these would not come to fruition.
I worked from home for a couple of days, as my sister Dora helped with wash and errands. I soon figured out, this was a two plus person job. I would not be able to burn the candle at both ends as she required help 24/7.
At the same time my migraine headaches have increased in intensity and I now require additional medication to get them under control. The stress of this all is not helping. I also have started taking Cymbalta for depression; I look forward to that kicking in.
So now the work begins at home.
My sister, Dora and I began with care of Lin, however, her pain level continued to increase in her back. She described it like someone hitting her across her back with a baseball bat; a tumor lies between her shoulder blades on her vertebrae.
I called Lin's sister Marlene. Lin seemed to be going downhill fast and thought that having someone in her family around would help her spirits.
Subscribe to:
Posts (Atom)