Postby vickitwo » Fri Jul 25, 2014 12:05 am
So I am going to ramble a bit. Included is an account of my husbands last days and death.
This past Thanksgiving, one of my husband's brothers , his two sisters (from out of state) and all of 5 our children spent the holiday together. It was a very special time and I can't remember a better Thanksgiving. Very shortly afterwards my DH's health started to rapidly decline.During that visit my BIL was discussing a book which he was studing called "A Course In Miracles". Supposedly it is the words of Jesus as transcribed by a Psycology Professor from the Columbia University's College of Physicians and Surgeons in New York City. She is now deceased. I was fascinated with what he was telling me about the course.
Dennis had a liver biopsy on Dec 6th to see if he would qualify for an anti PD L1 clinical trial.
By Dec 9th, (I think) he went to see the pulmonologist due to increasing respiratory distress. The pulmonologist did a chest x ray and some pulmonary function tests. He painted a grim picture. Dennis' lungs were severly compromised by the many pulmonary metastasis. He suggested we consult Hospice which we did. That evening, someone came to our home to set up oxygen and Dennis was given sublingual liquid morphine. Dennis was no longer able to climb the stairs to our bedroom and he began to sleep in a reclinder downstairs and I on the couch. I was so greatful for the oxygen and the morphine. It was the right time for it and made such a difference.
On Dec 12th, we had an appt to see the clinical trial doctor and decided to keep the appt. The doctor was surprised at the rapid decline in Dennis' condition. The results of the liver biopsy were still pending. After a phone consult with Dennis' regular oncologist it was decided that since the Folfiri chemo regime (which had been on hold for 3 weeks) had started to fail, he would go back on Folfox for a few rounds while awaiting the biopsy results. He had gotten Folfox X 9 rounds back when he was first diagnosed,( from Jan 2012 to May 2012). It caused the most shrinkage of the tumors but was dced due to increasing neuropathy. We cancelled Hospice and he got a round of Folfox on the 15th of Dec.
It had become a tradition over the past several years that we and two other families had dinner and spent Christmas Eve evening together. We are all friends and so are our children. One of the families was that of Dennis' oncologist and it was held at his home. Dennis suggested that a local radiologist and his family be invited also, he had been so nice to us at the hospital and his daughter and one of our daughters are good friends. Although Dennis had not been doing well, that day was a little better and he was very much looking forward to the evening. Dennis always enjoyed making people laugh and that night he was in rare form. (Morphine?) It was a large crowd and we all had such a good time that night. We laughed and enjoyed each other so very much. The next day, Christmas turned out to be not so good for Dennis.
Dennis was scheduled for the 2nd round of Folfox on Friday Dec 27th. By this time he was barely able to get up. I had gotten him a wheel chair just the day before. I was extremely doubtful that he would be getting chemo that day. When the labs came back we were told that they were OK and he would be getting the chemo. I needed to go to the post office to mail his medical insurance premium (long story.... involved with trying unsuccessfully for hours and hours, days and days to sign up on the ACA Health Exchange), so I asked my 22 year old daughter to come and sit with her Dad while I did this. When I returned, they had just started Dennis' chemotherapy about 15 min earlier and he had just gotten back in bed from going to the bathroom. My daughter said that the two of them had been watching a movie and had been discussing it. As soon as I walked in the room, Dennis sat up and coughed some. He said "I can't breath". Before I could react he said it again, turned blue and fell back onto the bed. By this time the nurse came into the room and called a code.This was not something Dennis ever wanted but he did not have an advanced directive and it happened so fast. My daughter was hysterical. I took her into a lounge and the two of us held on to one another while we could hear the hospital alarms going off. Later, Dennis was taken to the ICU and was on a respirator. Was it just a coincidence that Dennis was scheduled for chemo that day and that this did not happen when my daughter was alone with her Dad.... I am so greatful this did not happen at home and also that I was there to comfort my daughter.
I called my husbands siblings and they made arrangements to come. All of my children were at home due to the Christmas Holiday. Dennis spent that night on the ventilator in ICU. I did not know if he would ever wake up and if we would ever speak to him again. The pulmonologist said he though that Dennis quit breathing due to an infection. Who knows. The next morning they began to wean him from the ventilator and eventually transported him to Hospice House.
Dennis became more lucid at Hospice House. He was disoriented to where he was and did not remember anything from the hospital. He was shocked when I told him what had happened. Later he would tell me that he did not see a light or go thru a tunnel or anything like that. That evening with our family all together and his siblings arriving was another very memorable time. Dennis was very witty and we laughed so much. I could tell that he was enjoying himself. It was so special. The next day, Dennis looked the best he had in a while. His appetite was good. He had many visitors that day. He continued to be somewhat disoriented to where he was (thought we were at a hotel), so we were able to give him a wheelchair tour of the beautiful Hospice House. It was another day that I will always remember and cherish.
After that day he began to decline. He spent a total of 1 week at Hospice House. I spent the whole time there with him. One morning as I was getting dressed for the day and about to blow dry my hair he called me to the bedside. He announced that he had just had an "Epiphany". He told me that "two black guys were sitting by his bed. One of them reached over and took his hand." That was all there was to it, he did not elaborate any further. At one point my 22 year daughter told me that Dennis was looking at the ceiling and said I am dying J ???.(she could only understand that the name started with a J) Dennis had a best friend who drowned while the two of them were working on an off shore job. His name was Jim. Dennis' brother's name is Joe. I don't know if he was in the room at the time.
By Wed. evening Dennis became very agitated during the night. The morphine and other drugs were losing their effectiveness. My oldest daughter was spending the night with us. It is a heartwrenching memory that two of us will always share. I am so very greatful for Hospice House, I am not sure that we could have handled that at home. Early that next morning Dennis was put on a continuous subcutaneous infusion of Versed. After that he was unresponsive. He seemed comfortable and free of pain and distress. We played his favorite music softly for him. One of which was a version of "Somewhere Over the Rainbow" (sorry I can't remember the singer but he is from Hawaii) My son brought over some of our family videos and we played those. One night my oldest daughter sang the song "For Good" from the Broadway play "Wicked" for her Dad. It was so beautiful that later I asked her if she might sing it at his funeral. (She and her sister sang it as a duet,it was beautiful) One of the Hospice Nurses had promised that she would sing a hymn for Dennis but as the days passed it was never the right time. About two hours before he died, she must have known the end was near and came in and sang "Be Thou My Vision" I had been reading the book "Catcher In The Rye" on and off since about October. I had taken that book to the hospital with me on Dec. 27th., so I had it at Hospice House. I was reading it on Jan 4th and was on the very last page when I looked over at Dennis and noticed his respirations were very shallow. I went to his bedside. The kids were in the kitchen area eating and noticed me and joined me at his bedside. By that time the hospice nurse entered the room. Dennis took only a few more breaths and slipped away at 7:51 pm. January 7th would have been our 25th wedding anniversary. January 9th was his funeral and the two year anniversary of the day he found out he had colon cancer. His funeral was the perfect tribute to him. If there is a heaven, I feel that he is there. He was a good man.
The people in my community were very kind during this time. One of my friends who I will call Lisa made a point to check on me often. Once a week we would go out for coffee or lunch. Her family was at the Christmas Eve dinner.
We got into some deep discussions about religion, the meaning of life, what happens when you die etc. I was excited to have someone who I could openly discuss this topic with. When my BIL came while Dennis was at Hospice he gave me two books. One was "A Course In Miracles" and the other was "Return To the Heart Of God" by Robert Perry which is based on ACIM. Sort of a simplification. Anyway, I had been telling her about these books. She had randomly found a book on her sister's Kindle that she had been reading called "Journey of Souls " by Michael Newton. It is about people who have recounted past lives under hypnosis. She was very excited about this book. It all seemed to make sense to her. We had some long conversations about all of this. She even told me that she had told her 24 year old son about the book "Journey Of Souls" as she thought it would interest him. (he also was at the Christmas Eve dinner) One Friday in March while having lunch she told me that she was going to visit her sister (in another state) the next week as she was having surgery. From there, she was going to visit her 24 year olds son who was also living in another state. I found out the next day, that her 24 year son had been critically injured in a motorcycle accident and was on life support. He eventually was taken off of life support and became an organ donor to several recipients. It comforts Lisa that others can benefit from her son's organs.
I don't know if this means anything but I just find it all so ironic, the fact that Lisa had been comforting me in my grief, the nature of our conversations, the fact that she shared this book with her son before his death, the fact that two people that shared that Christmas Eve gathering with us are now gone, how our lives are so intertwined.
Anyway, this is a topic that I often ponder. It can drive me crazy. I want to know the truth. There is so much about the whole religion thing that just does not ring true for me. If there is a God, why does he have to be such a mystery. I fear dying but I don't fear death itself. I would like to think that after death I will be united in paradise with my dear Dennis and all of the departed that I have loved. If there is no life after death then I'll just return to dust and that will be that. I always am sad though for the people left behind.
Yada, yada, yada....enough rambling.......good night!
Vicki
DH Dx 1/2012 @ age 52
stage IV CC
transverse colon,omentum, cecum,liver,lungs,L5
9 rounds of Folfox, Avastin,
5FU/Leucovorin/Avastin
radiation tx to L5 and hips
Folfiri/Zaltrap
12/13/13 Folfox/Avastin
1/4/2014 passed away @ Hospice House- age 54