I traveled extensively for work during the timeframe of Karen's death. I took the time during my flights to write about my thoughts and feelings of Karen's passing because I knew that I wanted to get my experience down on paper as to not forget any details from my perspective.
"Karen died on June 11, 2006. What a journey the past few months have been. I’m very sad that I have to go the rest of my life without her. I need to write about the events from my view and I’m not sure where to start. I guess the beginning would work. On the morning of April, we talked on the phone and Karen told me that she had received a call that morning from the transplant center and they had a pancreas for her ...and could I give her and Eric a ride to the airport. I had a scheduled business appointment in Tempe for 11am and it would be too close to arrange a ride, so she called Keri Carlson for a ride. I stopped on the way to my appointment, to borrow a white camisole, because I couldn’t find mine anywhere. It gave me a chance to say goodbye, although Karen was packing and stressed to get things done before they had to leave. We didn’t get much of any chance to discuss the kids, but she always knew that when she had to leave like this... I would take the responsibility of taking care of them.
I didn’t worry too much about her going because she had such a laid back attitude towards her last few transplants and thing just would work out. But, it did cross my mind that she had looked so good and things had been going pretty good the past year and a half. I also knew that Karen would not turn down a good match for a transplant and didn’t question it beyond that. It seemed from the first report after her 1st surgery that things just seemed like it was not good. But once again, things just always seemed to work out before, but that nagging feeling that it seemed somewhat different. I knew Karen was not doing well because she didn’t call me. I talked to her a time or two, but I knew that I would hear from her more if she felt somewhat better. It just seemed like she never had the opportunity to really recover between operations. The first one lasted near to 12 hours and they never really finished. Her main vein in her leg collapsed and they had to clamp off the blood flow to the organs in order for the vascular surgeon to put some stints in her leg to save it. Dr. Belknap said that her veins were the worst veins he had ever worked on. The next surgery they went in to finish the operation and there was a blood clot. The next two, they went in again and ended up flushing out the organs, to give the pancreas the best chance at survival. After that there was internal bleeding and still was never sewn up completely. Along the way, she ended up having her pancreas removed because she didn’t want to endure another operation. They ended up finding some pus pockets behind the pancreas and hoped that treating that would make her recovery speedier. I must admit that at about the 10th or 11th operation, I lost count of her surgeries.
Dad called me one afternoon and said that all hell had broken loose. They had been suspecting an infection or something out of the ordinary because she had several days where she was delirious and loosing her mind. She then began to loose her sight, the first day the hallway being gray and then it progressed to not even being able to see the lights on in the operating room. At first they were thinking it was just the medication, but soon started a battery of testing to see what was up. There was a spinal tap, MRI, cat scan and a discovery of a fungus that had settled in her sinus cavity that was pretty fatal. They gave her a 30? chance of beating it...although even at that, you got the feeling that it was a sure shot in the dark.
I arrived in Salt Lake about this time of the hospital saga. I had wanted many times to come to Salt Lake to see Karen, but had the responsibility of the kids and work on my shoulders. I felt like the best I could do was to remove any worry from Karen about the kids being taken care of. But by this time, things were looking pretty bleak and Eric had called for the kids to come to Utah. School was out that Wednesday, Jordan had graduated on Thursday and the kids left for Utah Friday morning, flying out about 11am. I had the determined feeling that this was the time to go, so the earliest I could leave using my frequent flyer miles was 9 pm and Mark took me up to the hospital. I ended up staying with Bruce that night, sleeping on the sofa bed, while Bruce slept in the chair. Bruce had already had about 3 or 4 nights in the chair and I quickly figured out that Bruce knew I was there, and therefore he could sleep through Karen’s calls for help from him. After a few calls for Bruce, and no response, she called for me the rest of the night.
Those past few days with Bruce attending Karen at the hospital had really given Karen a reliance on Bruce’s great ability to take care of her requests. Shortly after arriving at the hospital, Karen requested her pillow be rearranged and tucked under her shoulders. I proceeded to try to accomadate her request and she said, no...Bruce. A day or two later, Eric said....I use to fluff her pillow just right, but now it’s Bruce this, Bruce that....no, Bruce!
She had a hard night, having diarrhea throughout and the nurses coming in and out of the room. One particular time she called for me, she said, “I don’t want to do this anymore...I just wish I could have a quick heart attack.’ I told her I wished that for her too. She was completely miserable and I can only imagine that each minute must have seemed like an hour. I prayed throughout the night that she could just be taken. There was not much sleep that night, especially by Karen. The next morning, in the light of the day, she looked progressively worse. Her face and eyes were more swollen and I marveled at how much she could endure. I mentioned to her that she was pretty incredible and she said...what choice do I have? I told her that she could be a crabby about it all.
That day was Sunday, June 4th. An incredible day of highs and lows. Early on in the morning, a girl and guy had dropped by, asking if they could send two Elders to administer the sacrament. We said that would be great and Eric had mentioned that he hadn’t been able to take the sacrament for quite a while, due to Karen and his flying schedule.
The Fungus doctor came by and told Karen that he wanted to go in to her sinuses again that day. Things looked good, but he was unable to determine if things had spread, or been completely contained without going in. She and Eric had talked that morning and decided that they were not going to go to any more extraordinary efforts to save her life. She expressed to the doctor that very thing. That she felt like it was her time and they had too many ways to keep her alive. She wanted them to help her go as gracefully as possible. It was decided that the team of doctors would be brought together to discuss that from all angles, but meanwhile, they were to continue to consider going in again to the sinuses that day. If all was well, it would be a short operation and if she needed further scraping of the fungus, it would be 30 minutes to an hour.
Blake had been brought up to the hospital and Brigg had gone to church with Mark’s kids. Two Elders of the ward came to the room to administer the sacrament. Present were Karen, Eric, Blake, Mark and I. We proceeded to have one of those special moments in your life when you know the Lord is near and his angels are administering to you. It was one of the most powerful, poignant moments I’ve experienced. It was determined before we began that the Sacrament could only be touched to Karen’s lips. The blessing on the bread began and the words were unlike I have ever heard them. O God the Eternal Father...it was as though the heavens had opened and the Lord himself had sent heavenly messengers, to comfort and administer to us. To make us aware that he was aware of Karen and our sorrow. It was as though the highest of highs conferged with the lowest of lows. The words were spoken and they were crisp, clean, clear and powerful. Tears could not be contained and we all felt and expressed how blessed were to be present. We walked the two visitors out of the room and Blake sat in the hall quietly crying. They were so sweet and expressed their sorrow to Blake and the rest of us how sorry they were. The one really reached out to Blake and tried to express his emotions in behalf of Blake.
Eric and Karen wanted Brigg to also come to the hospital, so Mark left to bring him from the church. You could hear Brigg’s distress and tears as he came down the hall. He rushed in to Karen’s room and sobbing said, Mom...are you going to die? You can’t die. Who is going to take care of me? Karen said, Brigg, you and Blake have each other. He said, but I don’t think I can live without you. She said, Brigg, the Lord has prepared you for this and you have your dad and you have Tom and Diane, Jordan...
He kept saying, I can’t go on without you. Mark and I could see that we needed to leave the room so they could talk about it as a family. Eric said that Brigg further expressed things like .... Who is going to help me with my insulin? Karen was as the wise soul comforting and counseling her children that they could continue their lives as she would support them from the other side.
She had a surgery to remove the fungus and a couple of days later the doctor telling us that it appeared that it had been arrested, but again, he was only qualified to treat it moving forward, and the possibility it could go backward to the brain and that would be treated by another specialist. It was decided to have the surgery to see approximately where things stood. The outcome was that things looked good as far as not spreading further, but the pituitary had been damaged and she would have to be on hormone drugs the rest of her life.
Mark and I had decided earlier in the day that it would be a good idea for all the family to come together for a family prayer. All the adults were involved on both sides of the family and Eric’s dad anointed her and dad gave her a blessing. There were a lot of tears and a certain feeling of we are really nearing the end. We had discussions throughout the day about how optimistic we should be and vs. realistic. There were emotions all across the board, especially in light of things getting bleaker daily. Even the doctor reports throughout the day would put you on an emotional roller coaster. Everyone would have different views of what the meaning of it was....so to speak. One would walk away reporting how hopeful the doctor was, and the next person, reporting that it didn’t look so good! What a ride! I caught a glimpse of what it had been like all along for those at the hospital.
We all went to Mark’s for a family dinner, although Bruce stayed with Karen. He was not to hardly leave Karen alone that whole Memorial weekend and for the following weeks, would do about a 12 hour nighttime shift. As things were winding down after dinner, I told Mark that we needed to go back to the hospital. He was hesitant, as we all were so tired. It had been such an emotional day, Karen had obviously looked worse and I just wanted to go be with her and tuck her in for the night. Surprisingly to us both, Karen was much more talkative. From the time I saw, it was hard for her to talk, just from a pure energy level and she answered questions, but did not offer many comments on her own. I told her that I would have to pluck her wild hairs and maybe I’d do that in the morning. She asked why not now?! I had wanted to, but didn’t want to press the issue if it was too much. So, I got her cleaned up and Mark and I both were invigorated by the opportunity to see her a bit more chipper and wanting to communicate.
From before the time I even arrived in Utah, the thoughts kept going through my mind about how I was even going to be able to leave her. To walk away and not know if I was even going to see her again, really tore my heart out. I had a 10 day trip to Washington DC, Baltimore and Hartford. Oh, how I wished I could just stay there and help ease her burdens! I had mentioned this to Karen about how I didn’t know how I was going to leave her and she said....life has to go on. Thanks goodness I had a Southwest refundable ticket and could change it as many times as I needed. I had just decided that I would just stay there and not worry about it and I would know when the time was that I could leave. It’s happened to me before and I just had to trust that it would happen again. I decided that I just had to have in my mind that I was coming back and she would be there. That was the only way I could handle the thought and I told her that I had already had a trip scheduled to Salt Lake for a convention in 3 weeks and I would see her then. I even mentioned that to Brigg and he said that brought him a lot of comfort!
On Monday, I spent the whole day at the hospital...Bruce and I mostly. It was a much better day for Karen. We walked her several times and she sat up on the potty chair several times and was able to talk more. At one point, she looked at me, and although she couldn’t see me, she knew I was there. She didn’t speak for a minute and then asked...how am I going to take care of myself if I’m blind? We talked about it and Bruce came into the conversation. We assured her that everything would be done to make sure she had help. Mark and Gary had said that they would pay for an assistant to help her. The very thought was daunting for us all...not to mention the thoughts that Karen was having for herself. What a hard deal that would have been. Karen has always known that I would take care of her kids should anything happen to her, so that was already a given. But we did talk about the arrangements of the boys having a room at my house and staying with us when Eric was flying. I had mentioned to her that I would not be their mom, but would be Aunt Diane and she said she didn’t care if they did refer to me as mom.
When I think of Karen not being here and still, it’s so surreal that she’s not, I envision her at the hospital walking down the hall. What a hard thing that was for her and how pathetic she looked. It made me wish for her that she was out of her complete misery. We encouraged her, but in reality, for me, it all seemed so hollow. With her swelling, her blindness and staring forward into nothing, her bulging, ointment filled eyes, the high ponytail, her determination to do what everyone wanted her to do and her determination to go farther each day. It is a vision that makes me happy for her that she is out of her misery.
I was able to visit with Jim and Desi Taylor late that evening. Bishop Clarke had encouraged the ward to fast for Karen on Sunday. I had spoken to him and told him to not fast for Karen to get better, but that the Lord’s will be done and she would be comforted. The Taylor’s had been so close to Karen and Jim was really giving her the pep talk. We were all really touched that the Taylor’s would make that herculeon effort to support Karen, but Jim and Karen had always had that connection through his trials with Valley Fever and hers with the diabetes. I was able to visit them again much later in the evening when they came by again. Bruce and I sat in the hallway while they visited, because I wanted them to have that time alone with Karen since they had made such a sacrifice for her.
I was working towards being able to tell her goodbye. I could tell that the only way I could do that was to tell her I had a flight booked back to Salt Lake in 3 weeks and I would see her then. I did say, get better...and she just paused and said...well. I knew she wasn’t but that was just the thing that came out. Eric mentioned that I might want to come by the hospital the next day and say goodbye, but I knew that would just make it harder to leave and the tears would come.
I left for Washington DC that Thursday and felt really removed from it all. I almost didn’t want to talk to anyone on the phone, thinking each time it rang, it was going to be ‘the call’. I had to brave it up, but I really hoped that she would not go when I was gone. But on the other hand, I didn’t want her to keep suffering. Right off when I got there, the report came that they had found a spot in her brain and the fungus was spreading. They had talked about putting her in hospice care at a place south of Salt Lake. But they asked if she could just stay at the LDS Hospital in hospice care there. They took the drips off and made her as comfortable as possible. Throughout the next ten days, I would get the report that she only had 3 days, or 24 hours, or 48 hours, but she kept rallying.
I made it through the IFE and drove to Baltimore for two days before Tom and I went up to the IBBA. I had the time to really put some thought and time into writing Karen’s life sketch and obituary. We drove up to Hartford and I just wished that the next three days would be over so I could go to Salt Lake. I really started feeling an urgency and knowing the trip was nearing it’s end, it intensified. I talked to mom and dad Saturday morning and mom was really wanting me to be there. I tried to get my flight changed to fly directly to Salt Lake, but the cost was about 450.00. We flew home that night with the thought that I would fly to Salt Lake that next morning.
I made the 10am flight and Mark picked me up with Blake and Brigg driving with them. I was more than anxious to get right to the hospital and that is certainly what I thought was happening. He drove past the streets that turned to the hospital and when I asked why...he said Kimi had lunch ready and we were all eating first. I asked who was at the hospital and he said nobody. I was pretty confused but went along with it. We got my bags unpacked and had a minute breather and Mark got a call for me to come up. If that call wouldn’t have come, it would have not been another minute before I would have requested to be taken up to the hospital. The urgency was definitely there...after all, there was no other reason I had made that trip!
When I arrived, I walked in and Eric, mom, and the nurse all expressed that they felt that Karen was waiting for me. I had felt the day before when talking to Elaine Pendarvis that Karen was going to wait for me. I sat on the window side of her bed and mom was on the other. I held her hand. She really looked beautiful. Her swelling had gone down and her eyes looked light years better. Although she still couldn’t close them completely. Her skin looked good and she had lost that puffy look. She was not coherent and her breathing was as though she was just sleeping and snoring.
I was referring to the hospice’s book and reading the signs of pending death. I told Mom that it said that they last sense to go was hearing. I told her that and she said....what? I had a good laugh over that!
Mom had said to Karen...Karen, Diane is here and you can go now. The nurse had come in to check her and remarked about Karen’s change in her breathing. Things had definitely changed since she had checked her last. She brought some meds in and put them in her port. That definitely changed her course and she died within the hour."
To this date, this is all that I wrote, but I will pervail and finish my writing...
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