The Time I got Married in the Neuro-ICU

Not exactly the wedding I expected, but for our relationship it is completely perfect. We were together for about 13 years. We talked about marriage many times. We had several reasons for not being married. This was not our first time around. We each had two children before we knew one another. We each had our own sets of baggage.

We had a pretty good relationship as far as things go. We rarely fought, we both shared a nutty sense of humor and we enjoyed each others company. These are the things that actually made our relationship work. Some of the baggage we had stayed with us, especially in the first couple of years. Then I got pregnant with my youngest daughter, our daughter together. By this time we truly were a family. He stepped very easily into the stepfather roll of my kids. He truly became their Dad, they always knew their father exists and my oldest has her memories. He choose to stay away from us, I guess for him that was his coping mechanism. We had contact with some of his family so it was not totally out of their lives, just not active or around.  Recently he has tried to fix it. Kids feel too little too late. But they are at least nice to one another. They had their Dad he may not had been their biological but he loved them and did what he could for them.

When our youngest was born she had many medical problems. Her health to this day is still uncertain and we overcame a lot of obstacles as people, adjusting to the way our lives changed. As the time past and continues to pass this child has been a true blessing. She has changed the way I see things. She has taught me what strength really means, she has taught me what unconditional love actually looks like. I knew what it felt like but spending a good majority of your life in a hospital, you actually witness true love. Not in the lovey dovey way but in the you can puke in front of me way and I can hold your wound sites and not puke on you kind of way. The bonds that our family gained through raising a family and a child with special needs and being surrounded by other families sharing similar type journeys is a gigantic eye opener. Will make you re-think getting behind the wheel drunk, will make you think twice about doing something totally reckless. When you experience your child fighting for their life and you look out of her room door just to look at something other than what is in front of you and you see a family saying goodbye to their family member. It is something that medical professionals and hospital employees witness regularly. They live it but they are helping and they are professionals, they have learned to push as much emotion away as they can.

Years started passing, the subject of marriage came up many times. Most people thought we were married. Most people did not know that he was not the father of all three kids. I guess if you would really look you could tell, but when you see people together for so many years they are family, so they look like family. We always put it off and we had decided that when my son turned 18 we would marry. That way I always had their last time until they were older and our youngest would understand as we all lived together. It made sense at the time.

About three years ago my husband started acting a bit strange. He started working out, which was good. He started going out more often, which was weird but good. He then started doing weird things. He loved his homing pigeons- a story for another day. One day I come home I see him in the back with some guys, I had met them before but did not know them well. I thought it was weird  but I did not interfere. I just went about my business and when they left I asked why they were there. He said Oh I sold them a couple of birds. I thought Oh thats weird we must need money, I don’t know about. I told my oldest daughter don’t you think Dad is acting weird. She said yeah I saw him drinking beer. I said maybe a midlife crisis or something. Then he started helping out the neighbors down the street. They were a freeloading family. Mother a druggie, Father a drunk. They have like 5-6 kids, they seem to love them but not more than they loved their habits. He allowed these people in our home all the time. Showering(they  had no water) eating, watching tv, playing with our kids and so on. This was really weird but well he was a nice guy so him helping people was not weird, it was just going on too much.

Our lease was up and after 9 years we were ready to live in a better house, a better neighborhood and well we were looking forward to getting older, the kids growing up and living our lives a bit more. So we got this great house, clear across town. I was working, he was working even my oldest daughter started driving and working. Things were looking up until one night the last night in the old house, he mentioned I am having a hard time seeing. I thought perhaps it was from the operations he had when he was a little boy. I did not know what it was. I made a doctor’s appointment for him. We moved and the vision was getting worse, his behavior was getting weirder and his ability to do things was clearly affected. Instead of him moving things like always he was bossing everyone around and doing nothing but cracking jokes. Him, but not him. So finally one morning he is acting really weird and I tell him I want to bring him to the emergency room. He resists and uses every excuse, he banged his head, it’s just a headache and well everything he could come up with.

So now he is in the shower and he starts screaming, he does not know where he is. I told him enough you are going to the ER. Truth is he tried no I am going to take a nap. Boy was he stubborn. Finally I get him to the hospital. The nurses in the waiting area don’t take him serious. He is having me push him in a wheelchair in and out of the place, he is on the phone and talking to people and outside smoking( a habit he had given up years before) . Finally it was his turn. The doctors checked him out and whatever they saw they knew I was not kidding about his symptoms and they did a CT Scan. This proved his brain to be very swollen and bleeding. They called for transport and rushed him to another hospital. The next three days were crazy. Test upon test and doctor upon doctor, We switched hospitals- another long story.

Now it is the day before he is to have a brain biopsy. He was very scared, as I and the whole family. He asked me, Please can we get married today. I explained to him this is not to easy to do. You have to both be present to get a marriage license and then they have the three day rule in our state. He started telling everyone that he really just wanted me to be his wife (legally) before he did this, they were cutting into his brain and well If I was not his wife before, I don’t know what I was so if it gave him comfort I was in. I was in it for the long haul with him with or without marriage. Well finally someone explained to him, if the doctor and the hospital write a letter to the court I can go to the courthouse and get all the paperwork for marriage with only one party. There were certain things that had to be proven to make it happen. Well If that man did not love me, and not want to marry me I could not tell. He called my sister at work and told her that I was going to get the license and we were going to get the social worker to marry us as she is a notary and my sister said no way. I am a notary and I am going to marry you. We will bring all everything just you relax and get ready to be married and obviously get your surgery.

So that day, I had to go back and forth to the courthouse like 3 times then rush home to do my daughters medical stuff and then back to the hospital. See not only was it going to be our wedding night, it was going to be the night before his brain surgery and two nights before our daughter’s spinal surgery- also another long story. So finally as my kids joked, Dad can’t get out of this cause he is in the ICU and they won’t let him out of his room and of course Mom you are late to your own wedding. Well I was late and if you ask my oldest daughter we had quite a lot of adventures getting all of that accomplished but we did. We got married in the hospital’s Neuro Intensive care unit. The nurses told us that my husband was the liveliest patient they ever had in that department.It was sweet  our kids and my nephew and my sister and some friends of ours were there and then his mother and sister were there also, they just came to visit before surgery and got to go to a wedding. It is not that we did not invite anyone but well we did not it was not at all planned we figured one day we could have a party or something to celebrate. He just felt like if something happened I would never know just how much he loved me. Of course he was wrong I knew for a really long time but I let him marry me anyway. Sadly his diagnosis was terminal and I lost him only 9 months later it is going on two years now. It is weird to be a widow when we only just got married. We used to joke that we did not have an anniversary we went by the amount of miles on the car. We met two days after I bought my car, which I am still driving and I just hit 179000 miles. We shared most of those together.

So now I have told you the time, I got married in the ICU.

525600 Minutes- Just like in Rent!

https://youtu.be/s1c3MARlJ0Q This is a link to the song referenced in the Title.

I don’t know if you have seen Rent? I only saw it about 2 years ago for the first time, but I have seen it many times since. I first saw it live in a high school performance. I was blown away that such an emotional show was put on by such a young age group of performers.

The reason I had this song on my mind is right now when I started this post it was literally 525615 minutes from when my husband passed away. He slipped into a coma about 4-5 days before he passed. He was in hospice(in an actual hospice house) for about 9 days total.

I can’t even express the emotions that I have felt over these last minutes, days, months. It has been one year. I never thought I would make it one minute and here I am alive. I am handling it, each day brings different emotions. Someday’s I miss him almost desperately, other days I enjoy the fact that I had the opportunity to love and be loved. I don’t really know how else I am supposed to feel. I did not know if I would ever take off my wedding band? would I switch hands? What would I do with that unknown emotion and process? Well over that year I figured it out about two weeks ago. I had to change my medications and I am retaining some fluids. My fingers are swollen and although my diamond fits just fine my band is too snug to be comfortable and I had to take it off. At least that unknown was answered for me.

Over the course of this year. I have lost my husband. My kids lost their Dad. I took a chance I quit my really crappy job for a chance at a better job. I worked just a few short months and I got axed because they did not want to invest the time in expanding the position. It was a starter position. They give me 100 phone numbers to call. They expected me to continue to call these same numbers for almost 9 weeks. I was through the 100 numbers ever 2-3 shifts. I was set up to fail and I did fail. First time in my life something like that ever happened. I have always been successful where ever I have worked. Most people either know me from School or know my from somewhere I worked. I believe most would attest I am a hard worker. I have experienced true financial hardship during this time. I have taken my daughter to dialysis 156 times this year. We have gone to more appointments than I can count. I have disassociated myself from all of my husbands family except 1 brother and his family and his half-sister whom I only got to meet one time. We keep in touch via the internet and I am glad that we have gotten to know each other a little at least. I have pretty much had to learn how to be single again. It is not like a single, like a break up and you want to move on, date other people, make changes. Being widowed is more like you are being forced to deal with all these changes that you really did not plan for nor want.  That is a lot of things that were not that great this past year. I found out I need a knee replacement in one leg, Had knee surgery on the other leg, and found out that will need replaced as well.

Now for some of the better things that happened over these 525600 minutes:

My son completed 8 and 9th grade on the computer doing virtual school. He also learned how to take care of the yard, fix things around the house, help with the laundry and basically take over some of the things that Dad would do. Like making sure his little sister is not doing anything she is not supposed to. He takes care of the dog and the bearded dragon and he is showing signs that he will have many success’ in his life.

My oldest daughter moved out and moved back in and is getting ready to move out again. She has gone from taking her Dad’s death very hard to working , working on relationships and moving forward with her life. She has learned to move past some things that were holding her back and she is showing some signs of true adulthood. I look forward to seeing where life will take her.

My youngest has brought her reading up 3 grade levels. She has gone from refusing to discuss school and reading to, hey Grandpa can you buy me this book I am interested in. She has attended 156 life saving dialysis treatments. She has finally met the medical goals she has been working towards to be re-listed on the kidney transplant list.

Our dog has gone from a little puppy to a big 70 pound bundle of playfulness. He has learned so many things. Tricks are not one of them. Sitting is though and we are proud of our boy. He sit’s like a scholar, just ask his loving siblings if that is how he would refer to them?

I could go on and on with all the things that have happened. So many details,

I saw my family experience true grief. I sit here now with tears on and off. I miss my husband. I miss his touch, his smile, his need to debate, his smell, there are so many things to miss. I know my kids have a hard time. We all have pretty good sense of humors and we take advantage of that. We need to. Life has dealt us some pretty difficult situations and we continue to adjust. As humans this is what we do, adjust, adapt, call it what you will but that is what we do.

In Rent, Angel went from this fun-loving, lively, energetic character to the end of his life. All of the characters have hurdles to jump and emotions and problems to work on. A year sure changes a lot in their lives and a lot in mine.

I do, so enjoy seeing Rent. The characters had me at the opening act. I couldn’t pick a favorite part but I have been known to randomly sing out, Jump Over the Moon. So that might be an indicator of a favorite scene.

I am hoping that anyone who read’s this will look at their 525600 minutes and see what happened with theirs.  I know for my self just writing this opened my eyes, see I started this while tears were streaming down, all I could think of was wow last year exactly now I was dealing with losing him. It is one of the worst things that can happen. Lose someone you love to a horrible disease. There was not one thing we could do to change it either. I also realized that my little unit is pretty strong. My kids whether the storms. They have learned to buckle down and I am nothing short of proud of them. I also learned that among all the bad things we had to go through we went through some good ones too.

Steroid Psychosis- a personal experience

There are some things in life we don’t ever believe we would have to experience. Not only do we not believe we would experience them, but we don’t even focus on the the fact that these things could happen. Why would we? I don’t know but I did experience this and there are many times that I believe me and my children we traumatized by this entire experience.

My husband, was a really great guy. Sure he had his issues, and maybe even a little more than the next guy but he did not deserve to leave this earth the way he did. Well in his opinion he did. He always said,”I have done a lot of bad things and I will die a miserable death from some horrible disease.” I would get angry and tell him shut up, you are being dramatic. Well he must have had great instincts, in fact he did but who would think that great. In November 2013 he was diagnosed with stage 4 brain cancer(glioblastoma). This is the most deadly and aggressive brain cancers a person can get. Sadly by the time we found out treatment was only a way to delay the inevitable. He did fight with everything a person could fight with. He did have his ups and downs and he did pass on knowing just how much his wife and kids loved him and a few other people as well.

When I took him to the emergency room, the staff(front desk) thought he was over reacting. They saw him going in and out of the front doors. He kept sneaking cigarettes(he had quit for a very long time but some how right before we knew he was sick he started again) He was on the phone and talking and joking and being himself. However, I knew that he was very sick. I knew the crap he was talking was not really making sense. I knew that the time frames he would be referring to were not current and he was not seeing correctly. He was walking into things and other signs only someone who knew him would notice.

When he finally saw a nurse they saw his heart beat was extremely low. This concerned them. I told them he is very sick. Terrible headaches and he is confused and so on. They agreed to do an MRI. I guess they saw something when assessing him that they agreed something was going on. Once they did the MRI, the doctor came in and said we have an ambulance on the way, you are being transferred to another hospital. Your brain is very swollen and we see a lot of blood. We don’t even know how you are walking and talking. At that moment he passed out and I had to soak in the information and try to comfort him. I made the pertinent phone calls and went to pick my son from school and bring him to my daughters who were both at home. I told them what was going on and went to the other hospital. After a few days we transferred hospitals again only to get the proper diagnosis.

After the brain biopsy a few days later we went home. We had the first appointment with the cancer center. We were told by the oncologist, that with out treatment he has days to weeks to live. He opted for the chemo and radiation. This bought him 9 months and I am very happy he did. Funny that I started this off explaining that we should be traumatized but I have not told you why. The reason for this is I want you to understand the back story a little. We were in love and we had our issues but who does not. Our kids were scared they loved their Dad and I was scared also. We banded together to make this as comfortable for him as possible.

This is the part that gets crazy. At first they started him on a lowish dose of Decadron. This is a very potent steroid. This is the kind of medicine that if not monitored properly will make a person insane and violent. They call this steroid psychosis. The doctors or nurses or anyone else mention this to the patient or the family. For a guy whose brain was shot he was pretty in tact. When he was on the low does I would joke and say here honey I have your cocaine ready. Time for you to run around the house and clean. He did this for weeks. He had fun cleaning it was easy for him to do and kept him busy. After about 3 weeks we noticed he was becoming a little obsessive about it. We also notices that he was easily annoyed. We mentioned to the doctor. We were told this is probably from the brain cancer and we should expect a lot of ups and downs with his personality.

Weeks are passing. His health is up and down as they said they kept increasing the steroids to deal with the increase of the swelling in his brain. After this whole nightmare ended we were told that this is a necessary evil. Well now he was starting to get really hyper. He would want to exercise and smoke cigarettes, he would want to eat every 2 hours and clean and go here and go there. He was literally running me to the ground as in between taking him back and forth to chemo and radiation and all of his extra and I do mean extra curricular activities, I had to take care of my kids, I had to take my daughter to dialysis three times a week and deal with all of her medical issues. I also worked part time and had a torn meniscus(knee) and required surgery. I was at my wits end and he would be more and more hyper. When I say hyper I mean. Lets paint the house(that we rent), Lets re arrange the furniture. Lets go here and there and back again. Lets clean out the garage. Lets go to the casino, Lets go and lets go. I could not go for much longer when he started becoming weird. At first it was my son who had it the worst. He would start talking to him about the bible. He was saying weird things and insisting he saw angels. Then he started forcing my son to pray. I mean pray out loud prayers he does not know, never learned and never needed to learn as I am Jewish and our kids are raised that way. He then started on all of us. He would be very nice to every one and then curse us out. He would call us names that would make the toughest guy in the world blush. He would get angry about nothing and because of the steroids he was strong. Because of the cancer he was starting to go crazy and because of the steroids he was becoming psychotic.

There were days were he would choke us, me the kids, any combination. Calling the cops on him would be quite counter productive. It was not him. He was very sick and dying. He did not need to be abused and sent to jail. One day he was so crazy and mad about nothing I was driving us home from who knows where and doing 50 down a main road. He reached over and turned my car off. He grabbed the key with such force it bent in half. Luckily I am a good driver. Luckily I know how to handle pressure and luckily we did not crash. He would get angry regularly and say he was moving out. He would literally pack everything he believed he owned(meaning well I paid for the tv, I bought that picture, I picked out those pillow) everything. He would say he was moving out and put everything in front of the house. When he was really really mad he would call his family, mother, sister and tell them that we don’t take care of him. That we don’t feed him and we hide his medicine. He would tell him that our oldest daughter was to busy screwing the guys in the neighborhood to help him get dressed and get to the bathroom. He said I was not taking him to his appointments. This of course was far from the truth. We stayed with him every minute day and night and when he ever got to a reasonable amount of steroids again he did realize it. That is the saving grace in the whole thing is that he did not leave this earth angry mean and violent.

This steroid induced rage lasted about 2-1/2 months. We had days that were truly nightmares. We had to listen to him every word he said or he would flip out. He would call family members and lie to them. Sometimes he would decide to fight with them to. They always blamed it on us. They believed we were being bad to him and all the crazy lies they believed. To this day I can’t stand them for sitting home living their lives while he literally went crazy abusing us and then they have the nerve to think we did something wrong. My mother in law to this day exactly one year past his death has not seen my children, asked how they. 90 percent of his family is out of our lives now. Sad, but good they are pretty worthless anyway.

My family did not know what we were going through. I never believed they would understand. I would lie and say he was not feeling well so no one would visit. I just did not want them to see the holes in the walls and the broken things from his fits of rage. I can look back on it and laugh as I have a gift of sense of humor. I am blessed with the ability to say it was not him. He loved me, he loved us this was the drugs talking. When we finally could not take him anymore I had to do something drastic. I felt that he was going to really harm us more than what we already were and I did not want to see it turn into a tragedy. I gave him Tylenol and told him it was his medicine. I knew that once the steriods started wearing down he would crash. He would fall asleep and feel like crap. The steroids were keeping him alive, they were also killing him. Finally he woke up feeling down and hurting and sad. He said I think I am dying now and I need to go to the hospital. I played the loving wife and comforted him. Once we got to the hospital they doped him up on the steroids again. They admitted him just because he did not feel well and the stage of his disease. The emergency did not understand that he was going crazy from the steroids. It took several days of him being in the hospital for it to start getting resolved. It took for nurses to hear him screaming at us on the phone when we were down stairs in dialysis with my youngest daughter. He would swear we were out doing something bad. He would be nice in front of the doctors and nurses but be mean to us. Finally after a doctor saw me crying in the hallway to listen to me. I explained what was going on and he knew right away that it was the steroid psychosis. He was not the doctor caring for him. The only way he was able to help was by putting him in a seizure room. This way he was being monitored by camera. This way they could see what was really happening when they were not in the room. They saw him throwing waffles at the kids. They saw him screaming at us and all kind of things. They would come in the room and he would pretend to be nice and that we were playing. He would want us to go along. Of course we did because we did not want more problems but we would tell the nurses when we would go into the hallway for whatever reason. Eventually they figured out they need to get him weaned down to the lowest possible dose. This would take many weeks and we would not see the benefit for several weeks. They have us some medicine that would knock him out if he went crazy at home and sent him home. Well he was crazy for about 3 weeks or so. We agreed to take him home only if he would agree in front of the doctors that if he went crazy at home he had to take it. Well too bad that did not happen he would throw the pills across the house and call a cab to take him somewhere. He would have no money and I would have to send the cab driver away. This was a very very low point in our lives. The kids and I were really starting to be afraid of him. We were tired. We were annoyed and we were scared we would never see him as himself again.

Finally he got to a reasonable dose. He was awake and functioning but not psychotic. This was better. He did not remember anything from that time. He did not remember painting, He kind of remember making the  holes in the walls. He did not remember the name calling and choking and punching and everything else. He did not remember cursing out his mother. This all came back on me eventually. When he started getting normal again. He would call them. They would say are they still treating you bad. That wife and daughter and all this nastiness. He would lie to me and say they did not say it but I would be sitting right next to him and hear the conversation. He felt terrible and spent many many nights apologizing for hurting us. It took the kids a while to get close with him again. They always loved him and that is what allowed us to look past the horribleness of it all.

As the time passed his health continued to fail. We did everything possible to fight it. I loved him with all my heart and while he was going through that terrible time, I kept it to myself. I did not share with anyone except one time his sister because he called and forced her to come get him. That was one of his big moving out days. I told her he was going crazy. She took it like really, but not serious.

He was admitted to the hospital several times during the next few months. Each time he came home a little weaker, a little more tired and a little nicer. He eventually got so nice that it was nicer than I ever knew him. This made it so much harder to lose him. I would try so hard to boost him up. Any little thing he did I would tell him he was great and full of will. He eventually lost his left side completely. He would still walk. He would use his right side to his full advantage until this no longer was possible. He did fight this horrible disease with as much fight as you could ask for. He kept positive. He would make this videos and looking back on them I cry my eyes out. He would sit at the table for hours drawing and it would usually be something saying that he loved me or one of the kids names or something that was easy for him. He really did amazing considering our first visit to oncology told us days to weeks to live. He managed to get past the horrible couple of months and make the next and last 7 a whole lot better. Even when he would lay in the bed for weeks on end and barely get up to eat or use the bathroom, he would yell out Babe- I love you. He would do roll call with the kids and tell them how much he loved them no less than 20 times a day. No one could know just how much he needed to say it and we needed to hear it. I still see his face all swollen, with his eyes shut and him yelling to my oldest daughter, he would yell hey G come here. She would be right next time him watching tv or reading and he would say you know I love you. We spent months sitting quietly while he rested. The kids, the dogs and I would just sit there. We did not know what to say or do. We would just talk to him when he was awake. The good thing is that with each down came an up for a while. He would have up days or nights where we would actually have fun. We would watch movies. We would make videos play cards and one night we even sat and had a few drinks(this is rare for us ever and I mean ever) We would take those good times and cherish them. My oldest daughter and I spend months researching this disease, If there was a way to cure him of it we would have found it for sure.

I would hope that no one ever has to experience this disease, or any like it. I know that cancer is a monster that just keeps on. I would hope if you had the time to read this and the misfortune of knowing someone that must take these high dosed steroids to see the signs before they experience what we experienced.

I hope my kids really can move past all the bad and just remember the good. I know that is not really possible as I know I can’t. But like I said before I am quick to make a joke to help ease the pain.

I will always and forever miss him. In 9 days it will be the one year anniversary of his death. I don’t really think this is the kind of anniversary we dreamed of. Hoping he is resting in peace….until we meet again.