This was originally posted in my old blog. I wanted to make sure that I brought over here so I don’t lose it. The lovely argyle crust pattern was done by my daughter-in-law, Moriah.
I haven’t written much of anything since just after my late husband passed, other than my Thanksgiving story from 1985 that I just dropped a few minutes ago, leaving it to posterity so that someday when my kids can’t quite remember the story there is a place for them to look.
A lot of life has happened in the last two years. It seems as though it has been moving at 100mph constantly. My husband passed in February of 2018 and the following week I was accepted into grad school. Which is still mind blowing to this once sixteen year old high school dropout.
Also the following week my son and daughter-in-law brought me home two German Shepherd puppies. Which I did write a post about in July of 2018. Apparently they had been in cahoots with my late-husband about me not “being alone”. They have helped to make life interesting.
I bought my first house on my own in April of 2018. I love my house it is old and is oozing with character. I do wish I had bought a slightly larger house, but things were moving so fast in my life and I fell in love with the arched front door. It’s like my personal Hobbit house.
In July of 2018 I met the love of my life and I know that was quick and the timing was crazy, but when you find that kind if love, you don’t let it just walk away. I was NOT expecting it to happen, but it did and she is amazing!
So, I was embarking on this brand new life in extremely unfamiliar territory. Looking back, it feels a bit like being shot out of a canon. I don’t think that I even realized how fast my life was moving or the insane pace I was moving at until just recently. I think that now that grad school is getting ready to draw to a close that I am going to begin a series of posts which will run through my time-line fairly close to chronologically, over the next few weeks, just to try and catch things up.
This story is about a Thanksgiving long ago. I bet some people have wondered why I changed my profile picture to my most recent tattoo. This tattoo commemorates my Grandma Weezie. Well, the reason is because of Thanksgiving. Yes, this is a long story that I am about to embark on. It’s the story of my favorite Thanksgiving memory. I suppose could trigger you if you grew up with an alcoholic relative. But here we go. It was 1985, my oldest child was a year and a half old, I was 19 and a half (yes, those halves count until you’re 21 lol). We stayed with my grandmother (back home in San Diego) for a few months while my then-husband was still at Ft Hood in Texas (in the Army).This actually the night before Thanksgiving, and I don’t know what set off my Grandpa Kenny, he was an alcoholic and by that time had become pretty immersed in his disease. But he got angry about something, which I’m pretty sure had to do with my cousin Jack, but I don’t recall what it was. But he WAS PISSED about whatever it was and forbid my Grandma to have any of the family over for Thanksgiving. He shouted, “None of your family is welcome in my house!”. He was a little scary in that mode. We ignored him the best we could for the rest of the evening, my grandmother was not generally someone to get involved in conflict. Once he had passed out (which was his M.O.), my grandmother and I went to our respective bedrooms and put the pillows under the blankets, so that it looked like we were asleep in the beds. Then we proceeded to pack all of the Thanksgiving food up and put it in my Grandma’s car. We took it all to my aunt’s house. We giggled the whole time, like two little girls. Once we dropped everything off we snuck back into the house and snacked on popcorn and giggled some more. Then we slipped off to bed. The next day, we went to my aunt’s house and had our Thanksgiving dinner. My Grandpa Kenny did not go with us and he never said a word about it. It wasn’t until a few days later that it occurred to us that he could very well have shot us sneaking in the house in the dark. But yes, that is my favorite Thanksgiving memory, a little dysfunctional, but my Grandma and I were fully in cahoots. lol
Bill passed February 2nd, and we did his whole send off on February 10th. But Bill wasn’t done yet. He had another surprise up his sleeve. So typical of him to have out of the blue surprises. I suspect that there may be more surprises on the horizon still. Probably long after I have decided that he is done. Because I can’t see him ever truly being done. He was a last word kind of man.
He had apparently been plotting with my children, for who knows how long. He made sure that I would receive a Valentine’s gift that would keep him on my mind. He was good at that sort of thing. He was quite calculating in most aspects of his life. He could make miracles happen, he could pull money out of thin air, he could read minds. At least I am completely convinced of those things. He had a unique sense of what the perfect gift was. Typically, he would give gifts that were personalized or permanent. he liked to give gifts that were engraved, like lighters or key-chains. He would have shot glasses made for special occasions, like the houseboat week or for a big get together. One time he had polo shirts embroidered for everyone. The shirts already had the logo of the company that we worked for on them, then he added the words “Drinking Team” to most of them, his shirt said “Team Captain”. He also made a different one for the non-drinker in our group, his said “Designated Driver”.
So, for Valentine’s Day, I received two German Shepherd puppies. They were 6 weeks old, cute little puffballs. I’m pretty sure that he had this carried out because he didn’t want me to be lonely, he wanted me to be loved. For me to feel his love for years to come. He was not demonstrative in touch or words, he was a gift giver. He gave me a gift that could be demonstrative, that would show me love in ways that he couldn’t. He wanted me to be protected, because he wasn’t going to be there himself to do it. He wanted to make sure that I was, that WE were going to be okay.
The puppies are Hellions, just like him. They do goofy stuff all of the time. I threw a dog treat into each kennel, the other day, and instead of going into their respective kennels, they went into the same one and scrambled to try and get the treat away from each other. silly girls. Bill would have made fun of them for being “stupid dogs”, he would have laughed. He would act like he didn’t like them, but he would secretly love them. Just like he was with the cats or our old dog.
Our old dog is getting very old, and for a long time we wondered who would live longer the dog or my husband. The dog won, he’s still here. He’s 13 years old, he’s a big old Shepherd mix. He has a hard time getting up and down the stairs, but I think he is still happy. I don’t think that he’s in any pain. His name is Buck, short for Buckeye. We got him from a rescue, so he came with the name. I wanted to get our youngest son the dog, because we had spent a couple of months taking care of a dog that belonged to a friend of ours, when our friend came and picked the dog up, our son was really sad. Bill would have done anything for the kids, but especially the little one. But the fact that the dog’s name was Buckeye was the deciding factor for him, Bill was from Ohio, and of course a huge Ohio State fan!
Buck is just a grumpy old man, much like Bill was. I thought that he would be happy with the puppies, someone to play with and keep him a little more active, but instead he complains about them all of the time. He barks at them when they get too wild in the house. He growls at them when they jump on him. It’s almost like he’s trying to train them how to behave. Which is funny, because when Buck was a younger dog, he used to knock our son down on purpose a lot. We used to get mad at him for doing it. Then one day I noticed a pattern, he was knocking him down any time he thought that our son was getting too close to the street. Smart dog, watching out for the toddler!
I think that Bill wanted to feel like we were being watched out for, the same way that Buck watched out for our our little boy. the silly dog way, knocking us down when we get too close to danger. Dogs to keep us on our toes, so we don’t carelessly leave things laying around, lest they be fair game for dogs to destroy. Dogs to force us out of the house, so we don’t shut down and hide. Dogs to give us endless kisses and endless headaches, hopefully not in equal measures. Dogs to cuddle up with on a cold and lonely night. Dogs to love us unconditionally, the way that only dogs can do… loyalty, protection, love!
The Send Off
During the week after Bill’s passing there was little time for tears. I had so much to do to make the funeral plans. I made arrangements at the funeral home for the following the following week on Saturday. I had to run to my employer to get life insurance information to turn over to the funeral home, otherwise I would have to have written a check for the funeral. I wasn’t quite financially prepared to do that at that very moment. I had to get in touch with both life insurance companies to start claims.
When I called the second insurance company, which was the bigger of the two policies, I called to first make a payment. It had occurred to me that in all of the insanity of life at that moment, I had forgotten that the life insurance was due on February first. When the lady answered the phone and asked me how she could help me, I told her I needed to do a couple of things. First I needed to make the payment. After I made the payment, I asked her if the policy was up to date without any lapse. She told me it was, then I told her that I needed to file a claim. I knew that it would take several weeks to get anything from the insurance companies, and probably a couple more weeks for the bank to clear the checks. SO I had to get on everything fast.
The next thing I did was go to the Harley shop. I had to find a nice shirt for my husband to wear for his funeral. He had lost around 260lbs and was down under a hundred when he passed. His suit was not going to work. I wanted to dress him in something that he would have liked. I bought him a very nice black and white, button down shirt with a pocket on each side. I spent over $70, which is probably the most expensive shirt that he’d ever worn. The people at the Harley shop were really nice and the lady had given me 10% off when I told her what it was for, or else it would have been over $80.
I reserved the community room at the fire station for the reception. I wrote the funeral. I madly looked through pictures online to find my favorite pictures of him. I printed all of them with the printer he had bought me for Christmas. I happened to randomly already have a pack of photo-paper in my possession. The pictures came out great!
I spent several hours compiling a playlist of his favorite songs and songs that had some sort of meaning to us, to be played at the memorial during the viewing and quietly during the service itself. Some of the songs were ones that I knew meant something to him in his youth, some were songs that we used to listen to at the bar when we used to go out. There were two songs on there that I have used as his ringtones. There were songs that he used to sing along with, with a way over-exaggerated southern accent He liked to do that. I don’ know if he was just goofing on the song, or if he did that because he was afraid to sing along in a serious manner, like maybe he couldn’t really sing, I don’t know for sure. At first it was a struggle to think of songs. I stared at the empty playlist on my computer for a long time. The the songs started coming, they began to rush to me. Every time that I thought I had the list complete, something else would pop into my head , then I would have to hunt it down.
I bought baskets for candy, to be passed out during the service. I was looking for some type of cloth to glue into the baskets, in order to make them personal to him. I looked at Walmart for material. I wasn’t even being super narrow in my search, anything to do with football, trucking, or gambling. They had nothing. So I went to a fabric shop. As soon as I walked in the door, I saw on the end of the third aisle from me that they had material with cards and poker chips on it. That was absolutely what I needed to make it perfect. I was so busy running hither and dither that people kept telling me to delegate stuff. I had a hard time doing that. But I did have my son’s fiance glue the fabric in the baskets for me.
I had lots of people who wanted to help, I did manage to delegate a few things, but I had an idea of what I wanted and I have issues with conveying my ideas in a way that would yield the results I was looking for.
I had to make a Facebook event page and invite people, that is the easiest way to do that, by the way. There were a million other tiny details that escape me now, but it was a lot of work. I hadn’t realized just how much work there would be. There were things like I had to get a copy of my marriage license in order to prove next of kin to set up cremation. Of course I had to have his DD214 in order to arrange for military honors. I always knew that I was going to write and conduct the service, I just wish that I had written it ahead. I had to buy items for the ceremony itself. A wonderful friend bought me a beautiful bell to ring at the ceremony. That would have make life a little easier. I had to buy tons of food, and cook!
I flew my husband’s best friend in from Florida. It wouldn’t have been right for him to not have been there. We all needed to see each other and he needed to have closure too. It was so good to see him. The night before the funeral, we went bowling with a couple of our other friends. They were all part of our old group that worked together and partied together. I brought both of Bill’s bowling balls. I decided that the guys should bowl with those. He would have been absolutely tickled that they were playing with his balls.
Finally it was time for the funeral. I think that I did quite well. I really wanted to give him what he would have liked. I put a pack of cigarettes,and a pack of matches in one of his shirt pockets. I put his wallet in the other. I sent him off with all of his credit cards. You never know, he might need them on his journey. The memorial that I wrote was a somewhat Pagan ritual, but I think that was okay. He never had a problem with me being a Pagan. He wasn’t very religious himself. I kept it mild and fit for general consumption though. The following in the service itself:
Dear friends and family, thank you for being with us here on this day to share our love and memories. We come today not to say goodbye to Bill, he’ll always be here with us. Bill wouldn’t have wanted a bunch of crying and sorrow. He would want us to celebrate his life. He would want us to laugh, he was a joker, he could always turn anything into innuendo. He liked to play practical jokes and I’ve seen him do some hilarious things. He was a fighter, a tough guy, a gambler, he liked to take chances. He loved children. I know that his children and grandchildren brought him so much joy, and maybe a couple of headaches, but he loved them a lot.
I’ve been to too many impersonal memorial services, presented by a pastor who didn’t even know the person apart from a questionnaire that was filled out by a family member during a time of great sadness. It’s hard to capture who a person is that way. So we’re doing things differently.
“As we all come from the Goddess to experience life; in death so shall we return to Her to experience peace.”
(Light the candle)
By the element of Earth, you were grounded in the physical world. (Sprinkle salt)
By the element of Air, you were open to knowledge and wisdom. (Ring the bell)
By the element of Fire, you were inspired with passion. (Hold the candle up)
By the element of Water, you could dream your dreams. (Sprinkle water)
So now, by Earth, by Air, by Fire, by Water…shall you pass to the next leg of your journey.”
Bill had a sweet tooth and anyone that knew him, knew that he loved Reese’s. We’re going to be passing out some Reese’s and sharing some sweet memories.
I’ll go first
Tell stories about and Leanne the comchek,
Bill h]iding James’s Truck
Let everyone tell their stories
Bill Milakovich, Know that you are loved and you will be missed on the physical plane. You will be in our hearts and memories for ever! I love you. May we meet again and remember.
Extinguish the candle
Merry Meet, Merry Part and Merry Meet Again!
So that was it, pretty plain and simple. People told all kinds of great stories. One person brought a little dram with them, but we moved on. I think it was pretty smooth, we all had a lot to laugh about, which was great! Some of us put some Reese’s in the casket with him. After that we went outside for the flag ceremony. We were all holding up real well until they played taps. I don’t think that there was a dry eye after that.
It was so very cold outside that day. It had been nice all week, then it decided to turn on us and ice freeze over. We didn’t have as many people as we had originally planned for, because of the weather. Not good for the roads, and the funeral was 20 or 30 miles out of town (I saved a ton of money by doing it out there, nearly $2000 difference, Bill would have been really happy about that). The reception was in town though, and we had a pretty good crowd there. We did have quite a few at the service, I don’t know, maybe 40. At the reception there were quite a few more. We had tons of food and nearly went through all of it.
After the reception, our old group went back to my house and did what Bill would have done if there was a group of people at the house. We got drunk and played poker. Not my thing, but Bill would have absolutely loved that. I had an old bottle of Goldschlager, that was Bill’s drink. We all drank a toast or ten to him.We played poker till like 3 or 4AM. I was exhausted, but it was worth it. I did all of the things that I think would have made him happy. That is exactly what he would have done if he had a big enough group to play. I can’t say how many times I sat up till 4AM waiting for him to come to bed. Here’s to the Riverboat Gambler (his cb handle), may he be winning big somewhere eternally!
I had been so afraid that Bill would die before his birthday, because statistically men tended to die just before their birthday, where women tend to die shortly after. I looked it up once because I had noticed a pattern at a cemetery. I hadn’t really taken note of men versus women, I just noticed that people tended to die close to their birthdays. I had wondered if it was actually a thing, that had lead me into Googling it. Anyway, his birthday was December 8th and we sailed right past it, sort of.
After the incident where he lost consciousness he started to became more and more confused and much weaker than he had been before. I think if I had to point to a moment when things started to get really bad, it had to be that night. One morning he asked me if I was working for the FBI, when I told him no, he asked me why there were all of the cars outside. I looked out the window and there were no cars out there. On several occasions he asked me where we were. He told me that this wasn’t our house, or sometimes he would say that we had moved the house, it wasn’t in the right place. Sometimes I would have to take him outside so that he could see the front of the house and the neighbors’ houses, so that he would believe me that we were in the same house. Sometimes he thought that our room was in an apartment building. He began to become more and more obsessed with “going home”.
By mid-January, Bill became very weak, his condition declined quite rapidly. His confusion got even worse and he didn’t want any visitors. He didn’t want anyone to see him. I’m not sure if he was embarrassed by his condition, or if having company was just too much work. After all, if you have company, you have to talk to them. I think he might have felt too confused to carry on a conversation. But it was so weird, because he was still spot on with our finances and had just begun to relinquish some of the bill paying to me. He really liked to have control over the money. I’m sure letting go of that control was like admitting defeat. Just like when I no longer allowed him to drive. I know that broke his heart, but he was on heavy duty painkillers and wasn’t safe to be driving.
In the last week of January, he would constantly tell us that he needed to go, but he didn’t know where. Sometimes he would say that he wanted to go home. We would help him into the pick up and take him for short rides. Typically after about five minutes of riding, he was done and wanted to go back. Shane, one of our older boys, came down from Kansas City to spend some time with Bill. He drove him to all of the houses we had lived at here in town. He said that none of them were his home. I suspect he may have been talking about his childhood home in Ohio, or perhaps somewhere he had lived in Kansas City when he was in his twenties.
They say that before you die you have dreams about loved ones that have passed. He didn’t report any of that to me. However, I had a dream that his mom and step-dad were visiting (hey both had passed a few years ago). I remember feeling really sad for his mom because she had already lost one son, and was about to lose the other. When I woke up, I realized that she was gaining him back, not losing him.
I was reading the texts that Bill had received, to him, because it was getting to be hard for him to read. I noticed a text that he had sent to his brother, not the living one, the one that passed away. The text said “God, I miss you. I will probably see you for your birthday”. So, I had kind of expected him to pass on January 28th, which was his oldest brother’s birthday. They were always very close, they used to talk every day, but he passed two years ago (see blog March 31st…). Bill already had basically said his goodbyes to his other brother, a week or two before.
I knew time was getting short, he had become just a shell of himself. The light in his eyes had gone. He had such a huge personality, he would light up a room, just by walking in. the door. He was funny and strong. He was stubborn and believed he was always right. He had more confidence than a human should have the right to have. He was a joker and liked to play practical jokes. He was a gambler and he wasn’t afraid to put too much money out on the table. In fact, I don’t think he was afraid of anything , ever… except for snakes, heights and tight spaces. I’ve seen him knock a guy out with one punch. He loved kids, especially babies. He would always smile watching little kids play. He worked hard and played hard. He lived as big as he possibly could.
His big personality had been reduced to nothing but suffering. He was so weak, and barely in there. I don’t know if he knew it or not, but he had been lost for months. I see it now in hindsight, I didn’t realize how much he had been declining for so long. That last month was so very rapid, I could almost believe it all happened then, but now that I look back at the pictures, I can see it earlier. He hid it so well for such a long time.
On Monday January 29th, the hospice nurse gave him 48 hours. At that point I took off of work to be with him 24 hours a day. They were rough days. He had to be in diapers and I had to do everything for him. He never slept and he would wake me constantly during the night. During one of the visits from the hospice nurse, I told her he wasn’t letting me sleep and I just needed a good night’s sleep. She had the social worker contact me about respite care. I thought that respite care would mean that someone would come and spend the night with him so I could sleep. But no, respite care would have involved putting him in a nursing home. That was not going to happen! There’s no way I could have done that to him, even if I was exhausted and it sounded like a good solution, it just wouldn’t have been right.
Forty-eight hours came and went. He was so very weak and so agitated. Bill was a resilient person. He had a strong will. No one was going to be able to tell when he was going to go. He was tough, he was also quite money minded. He knew that if he was still alive Friday the 2nd of February, when his social security check was deposited into the bank, we would get to keep it. If he passed before that, we would have to give it back. I’m not sure how conscious he was of the actual date or day of the week, but he held on.
On the first of February his agitation level had really peaked. He didn’t want to stay in bed, he kept getting up. He wanted me to help him to his chair constantly. I don’t remember when the last time was that I took him out to smoke, but I know he was smoking damn near to the very end. He would lay down for a minute at a time. He kept telling me to get him up because we had to go. He got up at about 11 that night he just would not relax! He was so restless and almost distraught. He had very chaotic energy!
I got very frustrated eventually. I could hear Samuel L Jackson saying “Go the Fuck to Sleep” in my head. I really wanted to utter it out loud, but I didn’t. I was so exhausted. I just wanted to go to sleep, he wouldn’t allow it. Around 6AM I gave him his dose of Morphine and Lorazepam. I sat in the recliner for a couple of minutes and kind of ignored him while I regrouped. I put on some music for letting go of stress and anxiety on Youtube. I sat next to him and did a guided meditation. I first started off with telling him to relax his toes, feet ankles, etc. all the way to the top of his head. Then he drifted off to sleep. I then began talking him through letting go of his fear.
I told him he needed to find peace. I held his hand and talked to him. I told him that he was a light inside of his body, that he himself was not a body, I told him that his body was a broken shell, he didn’t need it. If he could let go of it and have no more pain. I told him to look for the light, his mom and his brother and his friends were waiting for him. I told him to float out of his body and look down at it. I told him to look for the silver cord that attached his spirit to his body. I told him that he could cut the cord and fly. I talked to him for nearly an hour. He was resting quite comfortably, so I decided to lay down in the recliner next to his bed about 6:45 or so. At 7:43 my son Tim woke me up to ask if I would take him to take his car to the shop. Then he looked over at Bill and told me that he didn’t think Bill was breathing. I told him I didn’t think he would be. He had passed while I napped, peacefully in his sleep. No more pain or fear. I felt relief for him.
I didn’t call anyone right away other than family. I had read in a book that was gifted to me about dying that said that you don’t need to call immediately, it’s okay to have some time for closure. I left for a quick trip to the store, I bought some deli meat, rolls, a fruit tray, and some cookies. I had some friends and family come over. Everyone spent time with me and said their goodbyes to him. I kept myself together remarkably well. Around noon the hospice nurse showed up. I told her that he had passed, but I hadn’t called anyone. She called the hospice office to have the nurse that has the ability to pronounce people dead come out to the house. She showed up around one o’clock and pronounced him dead. It was so weird to me because other than his hands and feet, he was so warm. His hands and feet had been cold for months. The hospice nurse called the mortuary for me. The hardest part was when they took him away. That’s when I cried.
It seems like things are so crazy and my stress level is nearly unbearable at this point. My husband has been so up and down. And I know I’m dealing with logistical things that need to be done. I need to call and renew our healthcare subsidy application, but I’m not feeling it. I need to fill out papers to lower the payments on my student loans, I’m not feeling that either. There is a whole stack of papers that I have been avoiding. I have been feeling like going to work and taking care of my husband are enough, they feel like enough! I’ve been letting the house slip. I really just need to get boxes and start packing everything. I know that we will be moving shortly after he passes and the less that’s out, the less that needs to be cleaned up.
I have spent a lot of time learning how to keep a positive attitude. I know that things will always be alright, somehow. I’m strong and I will always figure things out. Because of the time I have spent working so hard on positive thinking, I don’t struggle with depression the way I did when I was younger, but that doesn’t mean it doesn’t pay me visits now and then, I’m just much better at bouncing back a lot quicker. Bill, has not been able to bounce back since he got sick, I think that may have contributed to his decline.
Cancer has been rough on Bill. He was such a big strong, strong willed, stern, independent kind of man. Cancer has made him so small and so vulnerable. I could never have pictured that he could be so broken. The decline in his health has taken an emotional toll on both of us, but for him it has been insurmountable. It’s like a mountain that’s summit can never be reached. He’s climbing and climbing to no avail, because all the while the mountain is crumbling under him and he’s falling and falling deeper into the depths of despair.
Bill’s condition seems to be deteriorating even more. I think our time is getting short. I’m afraid to leave him when I go to work in the morning. One of my sons is here with him when I’m gone. But I have a fear of him passing while I’m not here holding his hand. When my Aunt Lanie died, I was on my way to her house when she have lost consciousness. I always felt guilty that she was alone and probably terrified. When I got to her house, she was gurgling and unresponsive, but had a scared look on her face. I don’t want my husband to go without me by his side.
He really hasn’t been eating much for quite awhile. But he just went two days in a row without eating anything at all, and drinking only minimal water. He had also been minimally conscious the last couple of days. When he has been awake he has been pretty incoherent. Last night as I was going to bed he mumbled some words, I had to ask him 3 times what he had said, I figured that he wanted me to do something for him. When he finally managed to say it clear enough for me to understand, he told me that he had to make a drop by 3:26. I had to ask him if he meant deliver a load. He said yes, and I told him that it was okay, “go ahead and sleep, I’ll drive” (were both truck drivers, or were anyway).
Bill gave me one hell of a scare last night too. A couple of hours before he had informed me of his delivery, he, had asked me to help him to the bathroom. I got him up out of bed and into the wheelchair. Then he went unconscious and began to quiver, I don’t want to say shake, because it wasn’t violently. I suppose it may have been more like twitching. Then he went completely limp and he urinated in the wheelchair. I thought he had died. I just kept holding him and telling him, “I’ve got you.” Then he woke up and asked me to take him to the bathroom. I helped him onto the toilet. Then he noticed his pajamas were wet and asked me what happened. I just shrugged it off because I didn’t want to embarrass him. I got him fresh pajamas and got him back to bed. I got him to drink some water before he went back to sleep.
I was afraid to go to sleep, I had been worried that he might pass in the night. But then he was up during the night. I woke up a couple of times to see him sitting on the edge of the bed, in a state that was between unconsciousness and vegged out TV eyes (“TV eyes” are what you get when you get caught up in whatever is on TV, and you no longer are aware that anyone else is on the room). I took that as a good sign, and it made it easier for me to sleep. I have been somewhat sleep deprived for a couple of months now and there are days when I can barely function.
I got up at five this morning, just like every weekday. and got ready for work, he was asleep, and I went to work reluctantly. I never know what I’m going to come home to. But when I got home for my break, he was sitting on the edge of the bed and asked Jeremy (one of my boys), to refill his water. I took Jeremy to the convenience store to refill his ice water. Jeremy was hungry, so I bought him a couple of cookies and brought one back for the ol’ man and he actually ate it. Then he asked Jeremy to get him a Klondike bar, and he ate that too. I’m feeling a little bit relieved. Maybe he will hold on till after Christmas. I really am hoping to get a few days past Christmas. I’d like to keep Christmas from becoming a somber occasion. We need to get past January 18th to be honest, we have granddaughters that both have January birthdays, one on the first, the other on the 18th. I don’t want those days to be sad for them, or our children.
Last night, I had asked some good people that I know to send him some “hang on” energy. Maybe they have worked some Magick, and maybe he’ll be able to hang on. I certainly hope so. We are going to have to push and try to climb that crumbling mountain together. We’ll have to try and keep that mountain in one piece somehow, so that climb will actually take us up the hill instead of further down.
Thoughts were much easier to gather before I was staring at the blank page before me. I had an idea of what I wanted to say, but it all has faded from my mind, as it sometimes does. I wanted to give an update, but I don’t have many pleasant thoughts going on right now. I think that the stress has got the better of me at the moment. I’m so cranky and I know that I’m not being the nicest person ever right now. My temper is getting pretty short and I feel like I might have reached burn out. I’m frustrated. I’m obsessively eating. and that “I’m full” mechanism hasn’t fired once in the last two or three days. I can’t sit down for more than two minutes without having to get up to get something for the old man. He woke me up last night after I had slept about 2 hours, kept me up about an hour, I went back to sleep, then he got me up about an hour later and kept me up all night. He keeps looking to me for answers, and I’m feeling completely over my head. I don’t know what to tell him, my degree is in Special Education, not medicine. I think he really thinks I should know it all. I’ve already used all of my special mom tricks and grandma wisdom, this is way beyond the scope of my abilities. I feel helpless and pretty hopeless.
Our last appointment with the chemo doctor yielded unhappy news. Basically, the Keytruda has stopped working and the doctor withdrew the treatment. He wants to put him on conventional chemo. Of course Bill isn’t going to do that. Last time he was on regular chemo it nearly killed him after four days. His condition has deteriorated quite a bit since then in fact, in the couple of weeks he has been deteriorating at an exponential rate. There’s no way he is strong enough for chemo now, he was so much stronger and even somewhat healthy when they started the chemo, not so much ever since.
I feel like I am now spending my time on a deathwatch. So is one of the cats, he hates cats, but our tuxedo cat won’t leave him alone. The cat has been right at his feet for a couple of days now. I don’t even think he’s been out of our room. His temperature has been running pretty low, even as low as 93 at some points. His blood pressure and pulse have been all over the place, it was 116/92 earlier today, last night it was 125/61. His heart rate was 56 today, 102 last night. His blood sugar today was 85, yesterday it was 90-something, but I have no idea how it’s more than 45! He isn’t eating. He had literally one bite of toast today. Yesterday he ate a Klondike bar. He did have one slice of pizza a couple of days ago. He used to be a total chocoholic! He has a king-size Reese’s sitting on his table, he ate one cup a few days ago and hasn’t wanted any since. I’d bet hes pretty close to 200 lbs now, if not below it. He was like 370 or 380 when he got sick. Every single one of his bones are visible now. He looks like the pictures we’ve all seen of Holocaust victims.
Sometimes Bill gets mad at me for things that are beyond my control. Sometimes he gets mad because I can’t hear him, he’s so quiet now. I feel like I can’t do anything right, and yes, I know I’m probably being unreasonable sometimes. I’m just so fried. It sucks to do so much for someone that doesn’t acknowledge the good, only the bad. But I have to remember he’s in pain, he’s probably just as tired if not a whole lot more tired than I am. He’ll yell “help!”, and I’ll ask him what he needs, but only responds with “I don’t know”. I think it’s probably akin to when you’re in labor and all you can say is “I want my mommy!”. When I say that my back hurts, or the cramps in my feet are hurting, or I’m so tired, he accuses me of not understanding. He’s right, I can’t fully fathom the depth of this transition that he is in the middle of.
I really feel like I’m letting him down. Like I should know more, or be more. There’s part of me that hopes he passes soon, because I don’t want him in all of this pain and having all of the panic attacks all of the time. Then I feel guilty, I question my motives. Do I want to see him out of his misery or out of mine. It’s a total mind-f***! I feel like a terrible person, because this is his life that he’s clinging to. I don’t have any say in it. Saying things like “I just want him to not suffer any more”, is not even cool. I sometimes try to be optimistic, like maybe he’ll miraculously get better and not have any more pain, but who the heck do I think I’m kidding. I don’t even know what to pray for. I think we’re way past praying for healing. If I pray that he no longer would have any pain, am I really just praying he would hurry up and die?
It’s a horrible feeling, not knowing for sure who I am. I stand to benefit from his death, There’s enough insurance to put a sizable down payment on a house. And one of my many do-nothing-distractions is looking at houses online. I bet I’ve looked at hundreds of them in the last year. I probably know what’s on the market (with my specifications) better than any realtor in town! I use the house as a carrot, to keep myself going. But truthfully, is that what it is? Or am I really looking forward to life after all of this. How bad does that make me. I mean, I wish I could speed through all of the hard stuff and build my perfect little life. I really am not sure what kind of Karma that will levy. I feel so selfish. Ugh! I think I’m somewhat broken. I think I think way too much! But I don’t know how to turn it off. I feel so wrong for complaining!
I really meant to write more about him and less about me, just like last time. But I don’t know what else to say about him, other than I think he’s fading fast, and I’d prefer not to deal with it. I’m scared for our children! This is going to be hard on them! I feel like curling up in my bed and never coming out. I can only imagine that they are feeling about the same. Our youngest doesn’t really say much, I think he’s depressed. He doesn’t want to talk about anything. I’m not sure if that’s just being a 13 year old boy, if it’s just in his blood (like his dad and the rest of their family), or if he just doesn’t know how to talk about it. I know sometimes I don’t have words. I have exhaustion, I have depression, I feel overwhelmed, at the end of my rope, just barely hanging on to sanity, but actual words that describe the chaos swirling around inside of me? I have no words for all of that. And it’s all on me, I have to try and take care of the house, the kids, Bill, work two jobs, and somehow keep it together. Unfortunately my together has a whole lot of leaks, I think I need a lot of glue to keep from shattering into a million pieces.
I feel like we are headed down the dark alley of cancer, I mean the infamous “dark alley” where you find your end. I don’t know how to let go, I don’t want to hang on. I’m just hoping he gets some sort of peace, or relief. I finally broke down and made an appointment for him with his GP. We’re going to talk to her about getting a referral for hospice. I think that we just really need the help. A nurse will know so much more about how to help him than I do. Maybe I’ll be able to get some rest. Hopefully, I’ll be able to hold on to all of my pieces through all of the disasters to come and until life starts to bring happy things again. Hopefully in the mean time, my soul doesn’t leak out of one of the cracks or holes that have formed as I have become a little bit broken.
September came and Bill had his scans. He was supposed to have both the CT and the Pet scan the same day, but when he got through the CT, he was in too much pain to be able to lay down for the full Pet scan. He had to return on October second to do the Pet scan over. When you’re waiting on results for those things, days seem to last an eternity. This wait seemed longer than the rest have been, although they all seemed like an eternity.
Finally he went to his long awaited doctor appointment. I wasn’t able to go with him because I had to work. So my friend took him. I specifically wanted her to go so she would hear what the doctor had to say, because I had figured that he would forget. The doctor had really bad news. The cancer had grown again. It had been shrinking as of the last scans. But now each of the tumors had practically doubled in size. The doctor told him that the immunotherapy had stopped working and he wants to put him back on conventional chemo. My husband said “no”. The doctor was not happy with him. I’m not totally sure what is going to happen next.
Bill is currently gone, he is on his cruise with our friend. When he told his doctor that he was going on this cruise his doctor asked him if he was serious. Of course he was, apparently his doctor thinks that he’s completely crazy for going. I happened to have an appointment with my rheumatologist that same week. I told her about him going on a cruise and how his doctor had responded. She told me that he absolutely should go. Her grandmother had died on a cruise, she died happy doing what she wanted to do. I think that he really just needed to do this. He’s on the cruise and I ma here working, but for me this is a bit of a vacation. Well, as much of a vacation as I can possibly have right now, with my stress level and mounting sleep problems.
What I guess his doctor hadn’t told him about his scans, was the other problems that have arisen. I sat and read the whole report, with Google by my side. Some of it really wasn’t in English. But what I did get out f it was that he has developed fluid on his heart, and his “Aorta is aneurysmal”. Which I guess means he could have and aneurysm any time. He didn’t know about it, I didn’t tell him right away either. I debated over whether he should know or not.
I messaged his oldest son’s ex and told her what was going on. I asked her if he could bring him down. Because I know that boy would drive 100 MPH and end up dead or in jail before he could make the 170 mile drive down here from the KCMO area. We didn’t even tell him what’s up. She is a manager at the same place that he works at, she arranged for both of them to have time off , and she drove him down. It was good to see them. I felt like he needed to see his dad, because we don’t know what’s going to happen tomorrow. They stayed the night and left the next morning. While they were here I informed our boy and Bill at the same time. It was emotional and raw, and hard. I’m not sure I should have, but I wanted them to appreciate having a day together.
Bill broke down down a little. He had a hard time maintaining the stoic demeanor that we are all accustomed to from him. He had a few tears. I think it’s good for him to cry a little. I doubt that he had since he was probably four or five years old, other than a couple of times lately. I don’t know how to comfort him. He isn’t like most people. Dying isn’t like most things. I know there is a message in all of this for me, besides the fact that not everything is about me, even if it feels like it sometimes.
I’m trying not to fall apart and crumble away into emotional dust. Some days have been tough. I started taking Prozac about a month and a half ago. I think that it helps. My moods seem to have leveled off and I hadn’t been quite so tearful. I’m still struggling with anxiety, that just doesn’t seem to want to go away. I had gone about three weeks without a single breakdown. I think I was sort of flat. I hadn’t even realized it. I was at work out on the road when the first breakdown came. I was driving, alone in the middle of nowhere when the tears just came. I don’t know what brought on this crying jag. It just seems to have happened. Afterwards, I felt sort of relieved, not from the anxiety, but relieved that I am still human and even with the Prozac, I can still feel enough to have little mini breakdowns once in awhile.
Another family crisis has arrived, I wont go into it, but it is a major one. Serious bad stuff. I’m not ready to talk about it with anyone. I had a hard enough time forming the words to tell my husband last week. It’s big and bad, and awful. I’m a little surprised that I am still functioning. I don’t know when or even if I’ll ever really be ready to talk about it. I’m a little broken right now. Maybe more than a little. Writing helps, somewhat. I’m glad that I was already on the Prozac, I don’t know how I would be dealing at all without it.
The little breakdowns haven’t turned into huge breakdowns. Hopefully, I can keep functioning at a somewhat normal level and have little 10 minute breakdowns, instead of slipping into breakdowns that last for days. I might need to add an anti-anxiety med next time I see the doctor.
Anyway, I didn’t mean to make this about me, as much as that has come out. I think I just need to let some stuff out, before my little breakdowns turn into mountain sized breakdowns. I’m not going to implode, even though the last six days has made me want to implode, explode, climb under a rock, commit murder, disappear into nothingness, etc. We will get through all of this. I’m feeling pretty positive that Bill will make it home from the cruise, even though he isn’t sure. He texted me from Texas, telling me that he thought this trip was a bad idea. I told him he was going to be fine. It isn’t like the first bad idea that we’ve acted on. For now we just breathe and deal with each little breakdown as it comes.
My husband is still hanging in there. I am surviving day to day. We have good days and bad days. There are days that I think could be the last and days that make me think that he’ll beat this. Cancer is an ugly thing, it steals life and it plays games, it dangles possible hope in front of people only to pull it back. I’m sure that cancer laughs at us at every turn. It probably thinks that human suffering is the funniest damn thing that it’s ever seen. I picture cancer as some sort of mischievous demon, like part Loki and part Satan. It uses needles just like a voodoo high priestess might jab a doll, so does cancer jab, but it jabs the patients. It brings horrific pains, very suddenly. Unfortunately they don’t leave near so suddenly. They linger, the misery slowly destroys the patient’s spirit, while the demon chortles in his joy. Thank you Lewis Carroll for the perfect description of the behavior of the ultimate sadist, cancer.
In addition to breaking the spirits of the patient and the anxiety that patients in the end stages seem to drown in, it creates this amazing anxiety in family members and other loved ones. We’ve been dealing for over a year. It’s been getting harder and harder every day. The tears come easier and the laughter comes harder. I have finally thrown in the towel. I’m tired of dealing on my own, I’m just not that strong at this point, but I have to stay strong for the kids, because I am all they have. There is no grandma or aunt or anyone else to turn to. It’s painful, it’s frightening, and I have reached my breaking point. I finally went to see my doctor today and I’m adding Prozac to my M&M regimen. I’m hoping to get some peace. I don’t have high hopes, mostly because I don’t want to be disappointed if Prozac doesn’t “fix me”.
I don’t mean to be so selfish, I bet I sound like a terrible person, but right now I’m so burned out from being the main caregiver, I’m so glad that my kids have been able to take up some of the slack, like when I’m at work or running errands. They have done a great job dad-sitting. So, I’m not 100% alone in this and I have an amazing friend that takes up so much slack when I’m tied up. She takes him to appointments when I’m working or stuck at other appointments. She is amazing and wonderful and sometimes I feel guilty that I can’t do more for her. Hopefully I will be able to manage to be more there for her soon too.
When I made my last blog post, Bill was having a very bad week. He was incoherent and quite frankly more than just a little off his rocker. Since then he’s been more lucid, although, he’s had a few days where I felt like his mind was gone. Today he has been mostly coherent, although pretty frightened. He hasn’t wanted to have any deep conversations about religion or spirituality. Today, he told me that he is afraid this is all there is. I tried to bring him a little bit of comfort by telling him my beliefs. I am Pagan and of course I believe that there is more after this life. I gave him evidence of reincarnations that I have seen in my research. I asked him if he wanted me to get a priest for him because he was raised Catholic. He said no, he is having a lot of doubts, He asked the ultimate question that most people questioning religion default to “If there is a God, how can he let major disasters happen and children die?”. I don’t think my answer is acceptable for someone who is in that head space. I don’t believe in an all knowing “God”. I believe more in “The Force” which is kind of a malleable energy, I believe in minor gods and goddesses that we pray to for help to push some energy one way or the other. Much the same as Catholics pray to saints for favorable outcomes with God. But I digress.
Basically, this is our update. We are continuing to move forward, struggling, but surviving. His pain levels some days are insane and other days, not bad at all. He feels cold to the touch and is continuing to lose weight, he’s down to 215 from 385 (or maybe 380). To me it feels like he is winding down now. But I have thought that before. He could have a sudden bounce back. He could do much better for a few weeks. He has things to look forward to and to live for. He had a free cruise that he had received on our last cruise. He’s going in October. I have to work, so I can go. He’s going to go with a friend. We’re also trying to get a football game arranged, so that he can go see the Cleveland Browns (his home team). We also have a cruise with friends scheduled for January, I hope he makes it that far, it’s hard to know if that’s even a possibility. He’s going to have another scan in September, but we don’t have a date yet. We are hoping for a pet scan instead of another cat scan, which will give us a better picture of whether or not the cancer has spread elsewhere or has stayed put.
So for now, we are standing on the same ground we have been all along. Shaky ground that is narrow and on a fault line, high above a valley. Only mildly wider than a tight rope. There is nothing more than substantial than air to hold onto. There’s no net underneath us, no huge air bag, or trampoline to catch us if/when we fall. There is no bright shining light at the end of our tunnel, there is a downward spiral, followed by smoke and ashes. It seems inevitable at this point. But we need to keep our little light alive as long as we can, regardless how ridiculous that seems to be. Because that’s all that we have, that miniscule one ounce of hope. Sometimes, one ounce is all you need. I mean after all, how much is an ounce of gold worth? Maybe it only takes an ounce of hope, strength, fight, etc. to cage a demon. Those things plus perhaps a couple of pounds of M&Ms & a few ounces of Prozac.