Not even sure how to feel!

Just over two years ago, we found out my husband had terminal brain cancer. During that time in the beginning of him fighting this illness we researched every possible thing to help him beat that disease. During that time we read a lot and some of the stuff seemed promising some did not. We followed strict doctor’s orders and we discussed all of our findings with him regularly.

I know this is controversial, so I don’t always bring it up with everyone I speak with. I don’t share this information with all my friends and family as I know some would agree completely and others would disagree completely. Well a friend of ours insisted that we get the Rick Simpson Oil( it is really concentrated marijuana into an oil) I can be consumed by eating, or smoking and there are many ways you can get it. In our State is is not legal yet medically although it seems to be heading that way. We were never able to get the oil as its is not readily available. We spoke to his doctor about this and they stated I can’t tell you to smoke it but I sure will not tell you not to. If anything it will help your appetite and will be a good distraction from what your body is doing to you.

Our daughter was 20 at the time and her getting her Dad something to smoke was not difficult at all.My husband was a recovering drug addict. Staying clean was one of his biggest priorities and getting him to take pain medicine was just about impossible. I was working part time random shifts outside of our youngest daughter’s dialysis treatments and both of their many appointments. One day while I was working an evening shift my husband and daughter decided to smoke. They went to the back room of the house so the other two kids would not notice and they smoked a little joint( by the way it helped a lot but of course it did not cure him). Out of nowhere his mother showed up(we used to call her PopTart as she always just popped up-that was her way of seeing if our house was dirty or a way to catch us being grown ups)-perhaps if she would have been so concerned when her children were growing up they would not have all had drug and jail problems- but that is for another story) So now she comes  in my daughter says hi and goes to her room as to try to diffuse the uncomfortableness of her grandmother showing up when she is smoking with her Dad. She did not say anything to either of them. She visited for her usual hour and was gone.

The next morning I am in dialysis with my daughter. She calls me. She starts flipping out on me for 45 minutes, how dare my daughter smoke illegal weed with her son when he is sick. I said hold up, he asked for it. He is 48 years old and you really don’t understand the doctor said its ok and it will probably help him. She proceeded to tell me how terrible my daughter is and how she will never forgive her for giving him drugs. I told her that she is being crazy, that stop yelling at me I was not even there and my daughter is 20 years old, stays home all day taking care of her siblings and your son( who would fall down regularly, need constant medication, would need assistance to bathroom and she actually had to bath him as he would not let me do it) My daughter did everything for her Dad like a nurse would do and everything like a daughter would do. Her Dad thought she was the greatest in the world. So after 45 minutes I finally tell her whatever I don’t really care what you think my daughter is a good girl and she is doing that to help her Dad not hurt him. I told her that she should not be so judgemental when her children are no bargain.  She said she was not mad at me only that girl. I got annoyed and hung up. Of course I went to the bathroom and cried and I was so angry.

I did not want to tell my husband as I knew doctors only gave him days to months to live and I did not want him upset with anyone. After 3 days of stewing about it, I could not help but to tell him. He was so angry. He called her and told her that is terrible and that he would choose me and his kids over her anyday and that if she wanted to be part of our lives she needed to apologize. She did not and 3 months passed where we did not speak to her and she did not speak to us. Then the steroid debacle happened and he kind of went crazy. I have written about it on another post if you want more details. Well one day he said I am going to call that crazy lady and tell her every bad thing she ever did. I tried with anything to stop him. He flipped on her and well again I was the bad guy(mind you who did nothing either time). Now the months are passing. His chemo ended his radiation ended and he was on a very manageable dose of steroids. He was no longer acting crazy he was just sad. I thought I can’t let him leave this world without the love of his mother. No matter what an awful person I think she is some part of him really loves her anyway.

I decided to call her, I apologized for things I did not do and kissed her ass so she would go see her son. She made a big deal that she did not want to come to our home and that I should drop him off at her house. I told her I will not do that, he can barely see, he can barely walk with assistance and he can’t get to the bathroom on his own. That he has accidents and its best he is comfortable you should go to the house and visit him. She waited three weeks and finally showed up. She was rude to me and my daughter but she was super nice to him. I was glad she was nice to him as he felt better when she left. He told me see she is not mad at you. I did not tell him what she said outside and the rudeness she showed towards all three of the kids. She decided they were all bad I guess.

Once he passed away our relationship with his mother ended. She did not come to his memorial she did not help in anyway with his final expense and she did not offer to do any of this. She simply was rude to her other son and said I don’t know why she is doing the memorial at your home she is this and that. I did not do it at my home for my kids, for myself. His family has many thieves, many people who will not care that is my kids home and try to take things that were his. I can’t guarantee that is how it would happen but my instincts told me this was not a great idea and his brother was more than understanding. I paid for everything, I took the burden of telling all friends and family and of course I had to deal with my own emotions as well as my childrens.

Now it is almost two years later. I have my feelings about her. My family does not understand how deep rooted these emotions are. My Dad says I should not even think about her. Sadly I can’t help it. She was wrong the whole time and all of her kids did hard drugs. Two of them still do hard drugs but she said terrible things about my baby who did everything for her son. She gave up her late teens to care for him when a lot of kids her age would have said hire a nurse. She never took that into consideration she just bad mouthed us.

Yesterday my youngest daughter is talking to her cousin and we invited them over. He is 14 years old and they are living in her house. They have come across their own hardships and they basically had a choice live with her or be homeless. They chose her. So when my nephew walks in the house he is wearing a tank top with Pot Leaves all over it. I said Um nice shirt. He said Grandma got it for me. I said does she know its weed. He said yes she knows. So I said to his parents um nice shirt, they said yeah my mother got it she liked it for him. So now my 20 year old who is now almost 23 and had the worst feelings behind all that was the worst devil ever but she buys this shirt for a young teen who was born addicted to heroin but she pretends like we are terrible people when we don’t drink or smoke or do anything. It was a time he was sick and we were trying to help him. I changed the subject and tried to enjoy their company but I was hurt by seeing this.

When they went home I tried to forget but it was bothering me all night. I have so much more important things to worry and concern myself with that I won’t let this consume me, but I know for sure forgiving her ever again is not in the cards. I think if my husband could know this he would be crushed that she said all those awful things about us and now she is promoting it. I will add that she is a Jehovah’s Witness and is always judging someone for not being like her. I almost want to call her and tell her hey they are fighting for medical marijuana I hope you go out and vote as I know their religion does not allow them to vote, they can collect from the government but they won’t contribute. I guess that is for another story as well. I will do my best to let this thought leave me this morning and I will remember that she kept telling me I know I will see my son whole and well again. Jehovah tells me this, so if she is right(which my religion does not tell me this) she is not going to be to happy because if he is whole and well he already knows how crappy this all turned out.

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.

Another Gift from Beyond….

Yesterday was a pretty good day. I went to dialysis in the morning with my daughter. It was a fairly smooth treatment for her. She did not get sick at all or feel bad and she was giggling listening to videos with her headphones on for most of her treatment. I sat chatting with the older kids and the nurses and took care of a few phone calls I needed to make. My Dad had told me the other night on the phone that he needed to talk to me but it was not a conversation for the phone. I thought one of three things,see my Dad will be 80 this year. My Mother Passed away 15 years ago next month. The three things I thought was Oh My I hope he doesn’t tell me anything worse with his health, Possibly he wants to take my son shopping for school cloths.(this was a tradition of my Mom’s and Dad took over when she passed, All the Grand’s get new school cloths from her) or I was in trouble for spending something I was not supposed to and he knows about it. See I am not working due to several things, one my husband passed last August and he was the one who took our daughter to her treatments and appointments and I worked full time, Two I just had knee surgery two weeks ago and prior to that I could not walk for the last 7 months and three I can’t find anyone who is willing to hire me and work around my schedule and need to sit down at work. So that being said we are living on a budget that is smaller than our lives. For a while I had some money that was left to my from my Uncle and that was helping and then my Dad helps with everything else. It is a crappy situation for me and him. I wish I could figure a way out of it and I am hoping this surgery heals soon enough to help at least the standing part of the situation.

Well I was wrong all around. None of the three things I thought came to play at all. My Dad come over, It was a really bad thunderstorm and we sat and chatted while my kids acted like kids(they are way too old, 22,15,11) but they were having fun and really getting on Grandpa’s nerves. He can’t tolerate their immature conversations and the noise is also bothers him. Well after the big one went off with her boyfriend and the TV lost our interest we decided to go out to Lunch. Funny the kids were being annoying but he said on the phone OK we will get lunch, now it was 4 in the afternoon and they were starving and he was saying well guys, your big kids you can go in the kitchen and find something to eat. Well eventually he remembered and just He and I and the little one went out. It was a great lunch/dinner but the place was freezing cold. None the less when we pulled up back home I said Daddy are you coming in?(see he never told me why he wanted to see me in person) He reached into his pocket and said you know this is kind of late. See your Mother wanted you to have this, A beautiful gold bracelet, it is heavy gold and probably has some value. He had two of them they were slightly different. He said one was your mothers, and one your grandmothers, I no longer remember who’s was who’s but she wanted you to have it and she wanted your sister to have the other. I am guessing my other sister probably got something too but since she lives with him now he probably gave to her a long time ago. My Dad worries with my financial situation I will feel desperate to buy my kids something and pawn it. He knows me and knows that anything materialistic nice but I really don’t care about it one way or another. But what he does not know is I cherish every little thing they give me. I still keep an old broken ashtray from a incents thing he brought back from a trip years ago, I still have my Mom’s locket she gave me years ago, I still have all my kids first’s so many things and I am quite sentimental about these things. I have old curtains I will never hang nor will I ever get rid of just cause my Mom gave me them after she died. My sister makes fun of me how I word it but when she passed over the next three years my Dad slowly gave me little items that she picked up along the way, he would always say oh your Mother bought this a long time ago and here so I would tell my sister’s ha ha Mommy gave me another present. So not only did I get this awesome bracelet that will look very nice when I do ever get job interviews or have opportunity to go somewhere nice, I have another piece of my Mom or Grandma. Then the bigger top it off is My Uncle. My Uncle never had kids. He was my Dad’s younger brother and growing up he was the favorite relative. He was funny and always told jokes, he was cool if he caught you doing something bad he would yell at you and make a deal I wont tell your parents if this is the last time. He caught me with my first beer, first cigarette, and first joint. He never got mad just a little yell and lecture only one time I yelled at my mother and I had to hear it for a long time. Well this Uncle not only was a really cool guy he was very generous. He would rather give you his stuff if getting new, this has come from stereo hand me downs to cars to any thing you can imagine. Currently,half of my home is furnished in things he either gave me or left to me when he passed. He always split it between me and my sisters but they swore I got the better end because I was the youngest. Who know’s when he passed it was the worst. When my mother passed my uncle filled that void for my Dad, he was not in the best of health and gave my Dad lot’s of opportunity to hang out and go places together. He always loved having all of us over to swim and have bbqs he could no longer get out of his wheel chair the last few years but he was fun to play dominoes with and have a few drinks or just hang out and shoot the shit. He was a cool old guy. My whole family adored him. Well back to the story. My Uncle was fighting a law suit. I have no idea what it was for. When he got sicker and sicker and transferred everything to my Dad and had and attorney deal with all his stuff. My uncle was Smart and he made some investments which he left to my Dad and my Sisters and me. Well My Dad told me the lawsuit was lost a long time ago. I forgot all about it. Well it went back to court for and it was won There is some big settlement coming. My Dad said he did not want to hurt my feelings when my sisters get their cut and I don’t get mine. He said that he is going to keep it like a bank account and he will pay my bills and I can actually try to live off the little money I am getting. It sounds like he is treating me like a baby but he is not. My kids are used to me bringing home 800 bucks a week and money not really being an issue.Now we live on 700 bucks a month and its very hard on me as I am feeling like crap about having no money ever. So now I can worry less. When I want to buy a new mop or get my kids hair cut its not going to be begging my Dad, I will just tell him at the beginning of the month which bills and the amounts and if I need more I will tell him. This should keep me going while I figure out my other knee and heal and find work again. I wont be doing good and I wont be out shopping and spending money and having fun but I will be taken care of and that is beyond amazing. So yeah , I have a really cool Mom she might be dead and all but she is very much still giving me gifts, I will cherish that bracelet forever. I have a really cool Uncle too. I can close my eyes and picture my life with out everything he has taught me and given me and my life would be crap with out it. So yup even though my Uncle might be dead too he continues to give me gifts from the beyond also….

So with all the bullshit I have been dealt in life, I also have been dealt some really cool, amazing and generous people in my life and their words, thoughts and actions have molded me into me. For that I am extremely thankful.