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.
Tuesday, October 7, 2008
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.
Monday, September 29, 2008
The Big"C" - The story of Lin
It has now been over 574 days,19 months, since we started the battle with the big "C" - Cancer. I say we because when someone you love is diagnosed with cancer, the whole family is affected.
We were living our lives like everyone else, working, grocery shopping, running errands, mowing the yard, you name it, normal. It was late February, I remember Lin coming from the bathroom saying that she had blood in her urine. She went in to see the doctor the following day.
The doctor ordered tests and also referred her to a Urologist. The urologists ordered more tests. The Urologist recommend a cystoscopy. A cystoscope is a slender tube with a lens and a light. It is placed into the bladder through the urethra. It permits the doctor to view the inside of the bladder. A suspicious growth was found in her ureter, a small piece of tissue was removed and examined (biopsy).
The Urologist let us know that cancer was present and our lives changed. March 5, 2007, Lin was admitted to the hospital. Surgery is the primary treatment option for cancer of the ureter. The tumor was located and the surgeons removed that section of the ureter. The rest was reconnected to the bladder. This procedure is called a ureteroneocystomy, or reimplantation.
She was told that it was Grade 3, Stage 1 cancer. High-grade (3-4) cancers look less like normal tissue. They are more likely to invade the bladder wall and to spread outside the bladder and tend to be associated with a less favorable prognosis. Stage I - In stage I, cancer has formed and spread to the layer of tissue under the inner lining of the bladder. We caught it early enough, we could do something about it.
Recovery was hard. I will not pretty this up. The pain medication prescribed was morphine. This Opioid has many side effects. The most dangerous is respiratory depression including nausea and vomiting alterations of mood (nervousness, apprehension, depression, floating feelings), dreams, muscle rigidity, transient hallucinations and disorientation, visual disturbances, insomnia.
If you see the side effect listed, Lin experienced it. The disorientation and hallucinations seemed real to her and frustrating to me and her family as we could do nothing to help her work through the pain. After 5 days in the hospital, she would have paid handsomely to get let out. Day 6, she finally came home.
Post surgery she was started on intravesical chemotherapy, anticancer drugs that are placed in the bladder through a catheter. The anticancer agents remain in the bladder for 1-2 hours and have little toxicity throughout the body. Treatment was scheduled for once a week for 6 weeks. She received BCG, a type of biologic therapy which boosts the body's immune system to fight the tumor.
She was told she could go back to her "normal" life within 8 weeks. Funny - Ha, ha!! What a joke.
At the three month period, she underwent another cystoscopy and additionally an Intravenous pyelogram (IVP): In this procedure, also known as intravenous urography an x-ray is taken after injecting a dye through a vein into the bloodstream. This dye reaches the kidneys, ureters, and bladder and more clearly outlines these organs on x-rays. Another two tumors had formed in her bladder. Another surgery followed by chemotherapy. This time chemotherapy was to last only three weeks.
Again she was told she could return to her "normal" activities. These guys are comedians! Three months later, you guessed it, it happened again.
This continued for 3 additional surgeries.
This now brings us to present day.
We had planned a vacation as far back as February 08 for July, we needed something to help us to look forward in the future. Lin felt well enough so we decided that the vacation was on. We left for Maine and Nova Scotia on July 26 and were not to return until August 9th. What a great time we had spending time together. My sister Marti went along with us and we really enjoyed our time in Canada. Lin's sister-in-law Trudy and her three sons, Alex, Chris and Spencer, all joined us in Trenton Maine. We were staying with a friend and her daughter in their summer home. Lin, Marti, my sister, Alex and I traveled to Portland where we enjoyed site seeing and fishing for lobster.
Lin complained during the trip that her back hurt. We wrote it off to bad stiff mattresses as we had spent the night in at least five different beds.
When we returned home to our plush bed, the back ache continued.
She underwent another cystoscpy, the Urologist, Dr. Shawn Malloney, gave us the "all clear". No cancer! We were elated; what a way to end our vacation!
She went to our GP, Pamela Garcia, M.D. (the best damned doctor in Austin, TX). Dr. Garcia thought it may be related to scoliosis, an abnormal lateral curvature of the spine. However, she also noted a bump on her back.
In the interim I had to travel for work. I got my sister to come stay with Lin, much against her will. Before my sister could arrive, Lin was forced to call our friend Allison to take her to the emergency room, due to pain. She was referred to an Oncologist.
I had only been gone three days, when I got the call from my sister, Lin was back in the emergency room. She went to meet with Oncologist, Dr. Kocs (pronounced "cause"). The cancer had metastasized.
The cancer is now in her lymph nodes in between her chest cavity and her spinal column, her lungs and her vertebra, bone. She has a fractured bone in her vertebra and the tumor in her lymph node is putting pressure against her spinal column causing it to compress, thus the back ache.
She was diagnosed with Stage 3 Phase IV.
She immediately started radiation treatment September 12th.
We were living our lives like everyone else, working, grocery shopping, running errands, mowing the yard, you name it, normal. It was late February, I remember Lin coming from the bathroom saying that she had blood in her urine. She went in to see the doctor the following day.
The doctor ordered tests and also referred her to a Urologist. The urologists ordered more tests. The Urologist recommend a cystoscopy. A cystoscope is a slender tube with a lens and a light. It is placed into the bladder through the urethra. It permits the doctor to view the inside of the bladder. A suspicious growth was found in her ureter, a small piece of tissue was removed and examined (biopsy).
The Urologist let us know that cancer was present and our lives changed. March 5, 2007, Lin was admitted to the hospital. Surgery is the primary treatment option for cancer of the ureter. The tumor was located and the surgeons removed that section of the ureter. The rest was reconnected to the bladder. This procedure is called a ureteroneocystomy, or reimplantation.
She was told that it was Grade 3, Stage 1 cancer. High-grade (3-4) cancers look less like normal tissue. They are more likely to invade the bladder wall and to spread outside the bladder and tend to be associated with a less favorable prognosis. Stage I - In stage I, cancer has formed and spread to the layer of tissue under the inner lining of the bladder. We caught it early enough, we could do something about it.
Recovery was hard. I will not pretty this up. The pain medication prescribed was morphine. This Opioid has many side effects. The most dangerous is respiratory depression including nausea and vomiting alterations of mood (nervousness, apprehension, depression, floating feelings), dreams, muscle rigidity, transient hallucinations and disorientation, visual disturbances, insomnia.
If you see the side effect listed, Lin experienced it. The disorientation and hallucinations seemed real to her and frustrating to me and her family as we could do nothing to help her work through the pain. After 5 days in the hospital, she would have paid handsomely to get let out. Day 6, she finally came home.
Post surgery she was started on intravesical chemotherapy, anticancer drugs that are placed in the bladder through a catheter. The anticancer agents remain in the bladder for 1-2 hours and have little toxicity throughout the body. Treatment was scheduled for once a week for 6 weeks. She received BCG, a type of biologic therapy which boosts the body's immune system to fight the tumor.
She was told she could go back to her "normal" life within 8 weeks. Funny - Ha, ha!! What a joke.
At the three month period, she underwent another cystoscopy and additionally an Intravenous pyelogram (IVP): In this procedure, also known as intravenous urography an x-ray is taken after injecting a dye through a vein into the bloodstream. This dye reaches the kidneys, ureters, and bladder and more clearly outlines these organs on x-rays. Another two tumors had formed in her bladder. Another surgery followed by chemotherapy. This time chemotherapy was to last only three weeks.
Again she was told she could return to her "normal" activities. These guys are comedians! Three months later, you guessed it, it happened again.
This continued for 3 additional surgeries.
This now brings us to present day.
We had planned a vacation as far back as February 08 for July, we needed something to help us to look forward in the future. Lin felt well enough so we decided that the vacation was on. We left for Maine and Nova Scotia on July 26 and were not to return until August 9th. What a great time we had spending time together. My sister Marti went along with us and we really enjoyed our time in Canada. Lin's sister-in-law Trudy and her three sons, Alex, Chris and Spencer, all joined us in Trenton Maine. We were staying with a friend and her daughter in their summer home. Lin, Marti, my sister, Alex and I traveled to Portland where we enjoyed site seeing and fishing for lobster.
Lin complained during the trip that her back hurt. We wrote it off to bad stiff mattresses as we had spent the night in at least five different beds.
When we returned home to our plush bed, the back ache continued.
She underwent another cystoscpy, the Urologist, Dr. Shawn Malloney, gave us the "all clear". No cancer! We were elated; what a way to end our vacation!
She went to our GP, Pamela Garcia, M.D. (the best damned doctor in Austin, TX). Dr. Garcia thought it may be related to scoliosis, an abnormal lateral curvature of the spine. However, she also noted a bump on her back.
In the interim I had to travel for work. I got my sister to come stay with Lin, much against her will. Before my sister could arrive, Lin was forced to call our friend Allison to take her to the emergency room, due to pain. She was referred to an Oncologist.
I had only been gone three days, when I got the call from my sister, Lin was back in the emergency room. She went to meet with Oncologist, Dr. Kocs (pronounced "cause"). The cancer had metastasized.
The cancer is now in her lymph nodes in between her chest cavity and her spinal column, her lungs and her vertebra, bone. She has a fractured bone in her vertebra and the tumor in her lymph node is putting pressure against her spinal column causing it to compress, thus the back ache.
She was diagnosed with Stage 3 Phase IV.
She immediately started radiation treatment September 12th.
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