Today is Saturday – Dealing with Grief – Part 1

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Where to start?
First and foremost – My friends. I can’t tell you how much all of your emails, texts, messages, facebook entries, and phone calls meant to me. There were times in the past five days that I truly thought that I was going to break down past the point of return. It always seemed that somebody called or texted at the perfect time – when I needed it. If I did not tell you thank you then – THANK YOU!
The story – my dad was diagnosed with a lymphoma in the early 90’s – maybe around 1992? He went through all the normal stuff – chemotherapy and all sort of other treatments. Even back then the old mantra of chemo kills the bad cells AND some good ones. One of the potential side effects (if you live through the treatments) is that later in life, survivors often get various blood disorders. Most advanced cancers are not necessarily ‘curable’ but just controlled so that they do not spread. Tumors and the such are different, if caught early enough, the cancerous growth is removed and you are done. Our lymphatic system has it’s own little superhighway in our bodies and sadly, those evil little cells tend to spread elsewhere. My dad went through many different times where growths came back and truly after so many times of riding the roller-coaster of ‘bad’ news – I grew kind of weary of riding that roller coaster. I used to tell myself that I would believe it when he was in a box. I’m not saying that it was the correct way to cope, but I couldn’t go through all the emotions of ‘this is it’ and then have him laugh in the face of death by surviving longer. He has been through so much. Cancers, electrocution, heavy machinery accidents, quadruple heart bypass, I can’t even think of some of the others. One of his doctors admitted this past week that if we were cats with nine lives, dad had 29 lives. Unfortunately, he pointed out, he has used 28 of them. Very true.
I’m not saying that I haven’t taken any of the news lightly. I tended to process the information, look up stuff on the internet and then dealt with it however at that moment. Some of you have been very tolerable of me when at those junctures – again, lots of thanks due. This past June we were informed that ‘this’ time was probably it. They diagnosed him with Aplastic Anemia Syndrome – where his bone marrow does not replenish blood cells to keep up with where it needs to be. His blood volume level would go up and down and also his platelet count was crazy which was fought by having a ‘6 Pack’ of platelets added to his blood transfusions. I would hate to count how many of each he has received over the past four months. Through our investigation, normal people can only accept about ten ‘6 Packs’ of platelets before their body will just reject the new platelets and they would not do any good any longer. For those who don’t remember, the platelets are the first things that go through the blood to the source of bleeding to help stop the bleeding. Something as simple as a nose bleed or even cutting yourself while shaving became very serious issues.
Over the past four months, we kept an eye on him and he had good days and bad days. I called him a vampire as he would be invigorated after getting some new blood. When new blood did not help him, I told him that he must of got some old person’s blood. It was amazing how much blood helped his energy level. All during these ups and downs, he continued working and not much changed.
On Sunday, October 25th, I was being picked up by my family when they mentioned that Dad was put back in the hospital that afternoon. I called my Mom and nobody told me quite how serious it was at the time. He had had a hard weekend and his blood levels had dropped to unheard of levels. His blood volume was about half of what it should be and his platelet count was at ONE! Instead of 150 to 400. I saw him on Monday morning and he was very pale. By Tuesday, he was back to his normal self. Full of energy, walking around, and ready to be released on Wednesday. That was the Tuesday of my last post. What a change that day…
His doctor – the very frank one – came in and helped dad realize that the blood had turned into his life-support system. Sometimes the truth hurts. He truly helped my dad realize that he could keep getting blood but that nothing was helping. His body had already started attacking the new platelets which means that they would not help anymore. Basically, within six hours, we went from going home to going home to die. That made for the beginning of a rough week.
We made plans for the Hospice Care to come to the house. That proved to be a waste of time and energy under the results but I guess it was a better plan for a long haul if it were needed. The doctors gave him another transfusion – without platelets. This confused us as to the doctor’s plan but we all really think that they did it to give him a couple more days. No doctor, even the frank one, would take the bet as to how long he would last. A ‘normal’ man would go in one or two days. The best that the doctors would sort of allude to would be soon but no more than a couple weeks. The funny part was that they said to eat whatever you wanted and to enjoy life. He disliked the hospital food so much we sent out for doughnuts and even chili-cheese dogs! I bet the other patients were mad having to smell the food smells coming out of his room.
My dad had that affect on people. You couldn’t tell him ‘no’. And, nobody did. This big ol’ guy was loved by his doctors and his nurses. I’ve seen him be a terrible patient but these last few times he learned that a happy nurse equals a happy patient!
He was released on Friday and went home to his own house. He was in great spirits and on the outside showed nothing different. He was just dad. The long train of visiting family and friends. Actually the train started while he was in the hospital and then continued. We tried to let as many people as we could know about the situation so that they could come see him. It wasn’t so much to say ‘goodbye’ as it was to just be able to talk to him and celebrate him. It wasn’t necessarily sad and very few people actually said goodbye. We joked that it was similar to him being able to be at his own funeral. He was able to hear – firsthand – how much he was loved. Yes, it sometimes got teary – but it was very respectful and actually quite funny at times as people remembered ‘their’ side of the story and he was usually quick to correct them or laugh along with them. I wish there was a better manner to have invited everyone that we wanted to but it just didn’t work out that way. We all just wanted our time with him.
Saturday and Sunday were no different. Sunday a little weaker that Saturday, but unless you had been there the day before you would not have noticed. That was the hardest part is that he looked so good. It’s kind of hard to look at guy that on the outside was just so normal – knowing that on the inside his body was fighting for it’s life. Again, just more of a testament to him.
Monday was a little harder as he was a bit weaker physically. I opted to ride my bike to work and then stop by afterwards. As the day progressed, he was tired. He had asked for some morphine for the first time. Morphine has an added effect of opening up the chest to make breathing easier. We had purposely not allowed anyone to sleep at my Mom & Dad’s house because had she known she had company – she would have expended energy towards vacuuming and other tasks that she did not need to be worrying about. My sister and nephew had come down and were staying at our house. On Monday we decided that it was better to have them sleep at my parent’s house. My nephew is a strapping, fit, twenty-year old that could help out. As the night progressed, it was decided that I should sleep there too just to help out in case he needed to go to the restroom. When it was time to go to sleep he had asked for some more morphine. It was hard to get to sleep on the sofa, but once I was asleep, I was out.
It was still dark when my nephew called for me that my Dad needed some help. He had slept most of the night and my mom had helped him earlier get to the bathroom without any additional help. He needed some assistance and Chris and I helped him. He was very weak and clammy. After about twenty minutes we helped him back into bed and he was complaining about his head feeling like it was exploding. We gave him some more morphine. This is the part where having the hospice nurse would have been helpful. The one who came out over the weekend to get all the ‘history’ and stuff had brought the morphine and had given my mom instructions as to how to give it. The ‘real’ nurse was to show up on Monday but did not and did not call. We were not worried about things so we really did not bother with it. My mom was giving him very literally, drops of morphine. She was scared that if she gave him too much, it would be the morphine that would do him in and without any further help – did what she thought was best. We called the hospice and asked for the nurse to come – they said it would be about 20 minutes. So much for on call. I guess I just had wanted something more quickly. Mom had me call all my brothers and sisters to come. After the last drops of morphine he had breathed easier and appeared like he was going back to sleep. I called everyone. Tim was the furthest away and I made the mistake of telling him that mom wanted him here but also said that I didn’t think that this was it, but he definitely was not doing well.
My sister came and got me from where I was making the calls and was crying a lot. I went back and it was like a different man was laying in that bad. All the color had left his body and he had already started that hard, guttural breathing thing. He said some things, I can’t remember what. The breaths became fewer which was very difficult. Mom was at the foot of the bed, my sister and nephew at his side. The hardest part for me was when Mom said something about ‘This is it? I’m not ready!’ A few minutes more and he had another breath which actually made us all laugh because you halfway expected him to just start again and start laughing with us. He didn’t. Within ten minutes of making all those calls – he had gone.
When my other sisters had come to the house, I had to greet them at the door with the news. That sucked. I had made the decision not to call them in transit because I didn’t want them to get emotional in the car or to drive stupidly and risk another injury. The on-call hospice nurse came by – the same one that had come on Saturday. I let her know that nobody had ever come after her and she seemed surprised but also didn’t really seem all caring. She double checked that he had indeed died – wow, that was a hard call. I removed the oxygen tubing that had become an fixture of his room, hundreds of feet of clear tubing from the oxygen generator so that he could move around his room – maybe even to the back porch when he needed oxygen. I just didn’t want anything that looked sickly to be around him for when everyone arrived. I helped the nurse clean him up a bit and she had to inventory the morphine. She was amazed that so little was used and that’s when my mom admitted that she had not wanted to give him too much for fear of what would happen. Sad.
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