In Sept of 2009 my Mothers CT scan showed that she was cancer free. She was elated and had gone back to her life of seeing clients, gardening and studying. She had moved back to Austin in the Spring, but came up for our children's birthdays and special events as she always had.
She had some Hernia's bothering her and related the stomach pain she started to feel(on 10/14) to them, she decided to have the hernia's repaired. She came up to Dallas for her surgery on Oct. 29th.
I dropped James off and headed to the hospital the morning of the the 29th. When I got there Dr. Tate was out and explaining that he had seen "visible signs of disease" and that to operate would not be wise. He stitched her up and sent her to the recovery area. I knew she would be devastated as it had only been one month since she was declared "cancer free".
Mom started Chemo and went back to Austin. Forest and Rayne were at her home to help her. She was weak and shaken but so ready for the fight. When she came back on November 22 she looked so sick. She was throwing up daily and feeling just as she had a year before. She came to James' birthday party and then went to Simons home.
Simon drove her to appt's and I met them there. She stayed with me the week of Dec. 14th-20th and her sister Gail was here. We went to see her Dr on the 15th and we were informed the Chemo was no longer working, hospice was offered. Gail and I were with her.
Mom was not ready to give up and chose to try a clinical trial at Mary Crowley, she felt elated when we went on Dec. 21st but we had concerns as they said it was not for efficacy but to determine symptoms. She started the treatment. Simon drove her down and I would come for lunch or meet them there to see Mom. Her brother James came to visit.
On Dec. 31 she came to my home for a week. I helped her take a real bath. She was very weak and had to go to bed after the bath from exhaustion.We had a family dinner on New Years Day, I made Ham and Black eyed peas. She claimed it was the best meal she'd ever had. We had planned to watch a movie and she had been really excited, but was just not feeling well enough to watch the movie. On Monday, she was determined to go to her support group at Baylor. She was so weak, she fell in the driveway. Even after the fall we went to the support group and she talked positively about continuing her fight.
On 1/5 I took her back to Simon's. Later that night she was feeling really weak, running a fever and noticed a spot on her abdomen that was red. Simon and Missy drover her to the hospital. She was admitted that night and I visited her the next day. She was diagnosed with a perforated bowel and they tested her for sepsis(which was later confirmed). They put her on two strong antibiotics and Dilauded for the breakthrough pain(we decided this was the pain med to be on as she was chipper and morphine made her cranky).
When I walked in the door on Thursday morning, she was smiling and said "It's so good to see your face", she seemed so cheery I was a little concerned she was not in reality. When I went the next day she was still very happy and feeling well enough to get up and use the portable potty next to her. We talked about how she felt and she asked "does it seem like I'm in la-la land" to which I replied "well, kind of". She assured me she was not and that when she found out about the cancer she went through every worst case and had feelings about it so now she felt like she had already faced her fears for the possibility of death. She said she was not afraid to die. Her drainage tube for the infected area on her abdomen was operating as an ostomy but the Dr.'s seemed confused about it. She told me she had fallen backwards onto the bed. On Friday she fell onto the floor and laid there for several hours. She had bruises on her head and lower back and they did an Xray and CT scan. She was very shaken by the fall and this would become her focus.
Saturday and Sunday were good days. There were no major or life threatening events.She seemed very swollen but she believed it was from too much IV fluid(we now know her body was shutting down).
Monday evening I did not go to the hospital. I went to dinner with my kids and then home and fell asleep, I regret this now! On Tuesday morning my Aunt Veenie called me at 7am. She had called Mom and been told that there was a respiratory distress incident and the team was called. Mom was put on 100% Oxygen and her saturation levels were still below 80. She remained on 100% oxygen until she died. I called Mom and told her I'd be over soon. I called Simon and told him and he said he would go to the Hospital. I went to work until my pt'er arrived and then headed to the hospital. I should have gone straight to her.
Mom was upbeat and answering her phone. She ate a few bites and drank water. Her lips were chapped so I gave her my mint lip balm and the mint smell was pushed through the tubes into the room. We talked about how she was feeling and her plans, she wanted to go to Simons and get back on the study. The Dr's and nurses were very concerned about her oxygenation level, but surprised that Mom remained alert and upbeat. They could hear and see fluid in her lungs so the Dr. increased the lasix and potassium. Mom's arm was very swollen from the potassium and her veins were really hard to find. Simon and I went home around 9 and planned to see her the next day.
At 10:43 pm my phone rang. The person on the phone identified herself as the charge nurse, Christie. "Your mother is not doing well and we aren't sure how things will go in the next couple hours". I said "are you saying she might die". This was a reality that talking about cannot prepare a person for! She told me it was not looking good and that I should call my brothers. I called Simon and Forest and threw on clothes. I sobbed on the way to the hospital and ran to her room. When I went in she was not responding to the nurses but breathing. I shook her saying "Mom, Mom!!!" and rubbing her head. She opened her eyes, looked into mine and said "What's wrong, honey?". She looked so worried, she was every second my Mom until she died! I told her she wasn't breathing well. I was crying and she said "well, let's get me up, get me going". She was not leaving me that night. She told me, as if to make me less worried "those two are the most drama filled nurses here" and rolled her eyes. I think she was angry that they made us so scared. Simon arrived and she was still upset at the team. The resident told us we needed to really talk to the Dr about our plans. We were waiting to see the Dr.
The Dr's said they thought she had taken too much pain medication and with her already weak lungs it had caused her breathing to slow.I called Forest and told him she was better (we thought she was). We talked for a long time that night and she made the decision to take the IV's off. I was going to go home and sleep and Simon was going to stay but she told us she needed both of us, "you're my team" so Simon and I slept on the little fold out love seat together. She told us not to let anyone in(poor Christie got a talking to for coming in). I think we slept a total of less than 2 hours that night. She would say "let's take a nap" and then wake 1 hour later saying it was a great nap and be ready to talk. I said "let's take another one" but we never really did.
On Wednesday I took James to school at 7:30 and then took a quick shower and headed back. Simon never left. We talked to Mom all day.She talked to clients and Friends. Her Sister, Sister in law, and niece headed down. We told Forest to make plans to head up. Missy arrived about 12 and Mom napped while we ate lunch.She seemed to have a few episodes of almost convulsions, but the nurses said nothing. She took antibiotics,lasix and 1/2 her potassium pill by mouth. At one point I was siting by her bed and felt so sad. I started to cry and leaned down on the bed. I moved my face to her arm and then to her neck, I was sobbing. She rubbed my hair and told me it would be okay. She asked if I was taking care of myself, was I eating. She told me "you have to take care of yourself".She told me she was proud of me and that I would never be "just an ordinary girl".
The palliative care team came down and I asked for more information so the nurse brought Dr. Houck. She was our saving grace because she told us that Mom might not make the night and we were able to get people on the way. I would reach out to Dr. Houck again at 7 that night in desperation.
We had walked down to the family room so Mom could take a call. She asked us for silence. We were gone about 20 minutes. When we walked back into the room Mom's O2 mask was off and she was barely breathing. We called the nurses and started talking to her. We were worried that she would die before Forest arrived. We kept saying, "you can't sleep now, Forest is coming, we have things to talk about" We called Forest and he had just started on the way. We called my father who had planned to come over the next day and told him this might be his only chance to see her. She was happy that so many people were coming to see her, Simon told her "it's a party for you, Mom!" Her phone rang and she brightened up, it was her client.
After she spoke to that client we told her she may need to take a break form talking to clients. She said "yes. I probably should". A few minutes later she said "tiger woods, he made a mistake" Simon said "yes he did" Mom said " I was counseling him but had to suspend him for two weeks". We laughed, but she was serious.
Dr. Houck arrived and I asked if we could buy some time. She told us there was nothing to do to prolong her life. She was not having a reaction to anything they could correct and with her Oxygen levels, she was worried it might be only hours.
We kept talking to her and at one point she sat up and started reciting a poem called "Jenny kissed me". I thought it was a dream state but she said, "you will read that at my funeral" and started planning exactly how she wanted her funeral. She asked for paper and wrote the poem and then the order of the service. She put the paper down and said, "it's a work of art". We each had a part and she wanted no deviation.
Simon was standing beside her and started to cry. She was happy to see him expressing his emotions and told him he needed to cry and feel emotions.She held his hand.
She talked on the phone to Martha and then Jim. I called Gail and put Mom on the phone. It was hard to hear everything with her oxygen mask.
Mostly she smiled. She would look at us and smile and we each smiled back. At one point she looked at me and said "Do you think I'm going to die tonight?" I said "I don't know, Mom. Whenever you're ready".
Whenever she seemed to be drifting off I would say "Forest is coming" at one point she responded "You keep saying that, where is he?" and we all laughed. He was close.
Dad and Susie arrived. We were all with her talking. She was tired but we didn't want her to fall asleep.
Forest arrived and laid his head on her shoulder, he was crying. He said "How will I talk to you" and she responded "here" and pointed to his chest. She rubbed his hair. He brought her the red clover tea she asked for and she sipped a bit with her ice.
He sat down and started playing. Dad and Mom threw coins for an I-ching reading. She talked more about the funeral and then we left Forest to be with her alone.
When we went back in she was getting uncomfortable and asked for pain medication. They gave her a shot and then she asked to lay down. She wanted to rest.
We were going to leave her for a bit but Missy and I were still in the room and she started rolling from side to side. She almost fell out of the bed and Missy went to get Simon. I asked what she was doing and she said "just moving around" but I told her she was about to fall. Simon came in and her breathing started getting very shallow and gasping. We asked for Forest to come and I asked for Ativan to ease any anxiety. Dr. Houck had told me that sometimes O2 deprivation makes people just drift off in sleep but sometimes they become agitated, I did not want her to be scared. Forest and Dad came in. She was dying so I asked that it just be the three of us. We started saying "We love you Mom" over and over and touching her. We repeated how much we loved her as her breathing became more difficult. We sat the bed up and Forest tried to sit her up but it was too late. She looked surprised. The nurse came in and asked if we still wanted the shot. I said yes. I was so desperate that she not be scared. The nurse gave it, but Mom took her last breath seconds later. My body went numb at 2:08am. A part of it has been missing since.
We sobbed and held her.I asked for it to be just us again.
Forest sat down and started to play. We all cried as he played our Mother into the next life. Michael arrived and sobbed. He left work early but there was traffic so he missed seeing her.
We let everyone come into the room about an hour after her passing. The nurses and Dr's had tears in their eyes when they came in.