Team Angel- 1st of series…

I have written before about my Daugher Angel and have shared some of our lives. Thingscontinue to be complicated with my girl. She is now 12 but she is turning the corner towards 13, as she adorably tells me. In the past 2-3 years my family has been through a lot of change and we are trying to work towards what will be normal. When we get there it will be time for my son to head off to college I hope or whatever is going to be his future. My oldest daughter is 23 and lives on her own now.

Just about 3 years ago we were moving out of the house we had lived in for 8-9 years. We were moving to a totally new neighborhood to a better house and schools. No sooner did we move into that house than we found out my husband had Terminal Brain Cancer. We went from finding out about this disease and watching this disease eat him alive. I could actually write an entire series about my relationship with him. He was something else I used to call him Shenanigans as he was always involved in something. Building this, moving that, fixing this, breaking that. He was a good spirited man who had a lifetime filled with mind damaging emotional baggages. He fought through his life by outweighing the bad with the good. Somehow he stole my heart with his unique ways and truly fun to be around. During the time he was sick only parts of our lives could be altered. Angel still needed to go to dialysis and take care of her medical needs. She had Spinal surgery( the same one she just had 4 weeks ago today) the day after her Dad had a brain biopsy. There were 6 weeks where I would take Angel to Dialysis get her hooked up, drive home 45 minutes and get him and my oldest daughter who would take care of him and get him ready, off to radiation then we would usually all go home together, unless one of them needed to be admitted and then my oldest and I took turns driving back and forth taking care of everyone.

He passed on 9 months after diagnosis. Angel went to dialysis the next day. Some people think so what it is routine for her she has been doing this since she was 4 years old. Dialysis is not routine, you make it part of your routine. Any day, any treatment can go from relaxed and laughing to throwing up, or getting fever. Can go from feeling great to needing fluids, because you are crashing. It is a toll on the patient seeing their blood go in and out of them for 3-4 hours, Angel was on 4. It is also difficult on the family members who go with them. They have to hope for good days, hope there is no problems with the machines, or the water, or your access. Then your 4-5 hour day turns much longer. Angel went to dialysis the next day. We came in the afternoon instead of our normal morning the nurses said it will be quieter and be better for her to not be forced to deal with others so quickly. Her dialysis center is her comfort zone. She has grown up there and has been loved by the nurses, taught by the nurses, teased by the nurses and nurtured by them. They have been the same team for a long time and each brings different personality and experience to the unit. It makes for good outcomes during treatments, they notice something is off sometimes before the patient themselves. They also know the I have a tummy ache please play with me to the real let’s call the doctor pains. It is a comfort zone that only a person who experiences should know when they are among good people.

So back to Angel 5 months ago we were told that Angel has the BK virus. This is a virus a lot of people carry. It is likely it came with her transplanted kidney. She has not been able to beat this virus. They have taken her off this medication, started her on that and so on. It came down to Infusions every two weeks. During that time she caught many urinary infections. She was running low grade fevers on and off and something was not right. She was admitted many times. Each time the stay was about 10 days. She had the first of her spinal surgeries. Although there was complication during surgery she seems to be better from that each day.  2 weeks ago she was admitted to the hospital with terrible stomach pains, low fevers, throwing up on and off, no appetite and non consolable kind of pain. Once we got to the day hospital , the pharmacist who knows us for a very long time said, called the doctor immediately when he heard her cries. He said Dr. P, this is not Angel she does not cry like this. It took 10 days or so to figure out what is truly wrong with her, so much tests. So many things ruled out. We finally got a diagnosis. No wonder she is screaming in pain her native kidney is filled with cysts and totally infected. So now we have a source but what do we do about it. She is still with fevers and terrible pain so how do we proceed. Infectious disease is helping with antibiotics and surgery has weighed in on the we don’t want to take it out. They have already done the following surgeries on that area of her body:

Colostomy

2 Reconstructive surgeries

Colostomy reversal

Kidney  Transplant

Kidney transplant removed

Kidney transplant and Urostomy placed.

She has had many other surgeries but they were on the other side or her back or other body parts.

So now for them to go back in and take out that infected kidney is going to be very hard on Angel and very hard on the surgeon. They will do what they have to for Angel but what does it mean for her health. On Wednesday we will re-evaluate blood tests, inflammatory markers and something else and then a plan will be formed from there.

My daughter is one tough kid and she is no crybaby. They wake her up for blood work and she just fusses about the light coming on. When it is time for meds the most she will do is grunt and sit up. When she is feeling good we go for walks, if she is hungry which is not often I get her whatever I can that she likes. If she wants to play or do arts and crafts we do it but a very good part of the time she sleeps. She likes when the family comes to visit it makes her feel like she has people pulling for her.

She has been really surprised this admission with all the terrible pain and all the crap she has gone through, she has had some good come with it. She won a school raffle and won an IPAD Mini with a case, headphones and an Itunes card. That was so awesome for her she is loving it. Also a friend of ours did a fundraiser with the company she works for and they get her a new outfit and a donation that will be coming. Not only was it something fun to be part of it made her feel loved. People that know her people that don’t were sending her messages.

So hopefully wednesday we will get a good plan. It breaks my heart listening to her cry in pain all night. Some nurses are wonderful and know to have the meds ready that she calls out every so many hours and  others want to go through the process when she is already screaming in pain. I know some people will follow all rules but when in Peds, the rule are meant to be broken when it comes to pain management and comfort.

Today was the first day that she attended Teleclass in over 2 weeks and she was hoping her teacher would come down and see her today also, although it is not a scheduled day.She gave me the greenlight to come home, grocery shop for my son and shower and come back. I am cheating taking a little me time to write. I am glad I can type quick 🙂 .

 

Check back for updates about Angel

if interested you can follow her story on Facebook

https://www.facebook.com/teamangelraye/?fref=ts

 

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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.

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.

Cancer! You Suck!

Again, I have to accept the fact the cancer has reared it’s ugly head to someone else I love dearly. This person is probably the person I love the most in the entire world, My Dad. I have so much love for my other family members, but my Dad has always been the one to I wanted to hang out with.

When I was a child I was the youngest. I was the one that was different. I lived among a family who believed very much that love is something you don’t need to talk about. Showy love is for some but not everyone. I was told by my Mom, Lisa do you have a roof over your head, clothes on your back, food in your house, is it cold in here? Is there any time you have gone with out by necessity? I would of course say no. She would then tell me that is love. Why in the world we would work hard to make sure you are all ok, do things we think will teach you about life, culture and a little of everything in between. That is love. Love is not something you can describe in a word. Love is a action. It is something that you do always when you really love. So I did know and understand but I still wanted to be told and I still wanted to be the huggy kissy one, as my sisters would say. I would kiss the relatives and hug them when they would come and go. Typically they probably thought I was annoying. I guess I was.

My Uncle , he never cared though he would say get off me you little monkey and pat me on the head. When I got older I realized that I was the one who liked to do these things. They did not so what. Why should I stop being me because someone else is them. I never did and still do not. Now that I am older I realize that love for family is not something that you have to do. It is something that should simply come naturally. If it does not come naturally then it should not be. I have relatives that I don’t really think give a crap about any of my family, only their extensions of it. That is ok. I used to be offended now I could care less. I wish them the best and I am sure that if we found ourselves together we would enjoy one another’s company. Life just gets in the way, likely it is not personal.

I mention my family ties and a little about me for a couple of reasons. One I am easily distracted. I can go from one topic to another, well almost accidentally. Other reasons are ,I want it to be known that I feel, and always felt that I have a small family. My Mother’s side was small to me. Many of my Aunt’s passed a away before I ever got to know them. Cancer. These ladies were my mother’s cousins but they grew up in the same household so they were sister’s, sort of. The older relatives, grandparents and their siblings passed over the years. I will admit I am fortunate in saying three of my four grandparents lived to pretty old ages. By standard at least. Grandparents on Dad’s side- Cancer. Not really sure was my grandfather on my Mom’s side. He passed before me and my sisters were born and I am not really sure from what. He was sick and for a long time and he likely had -Cancer but I really don’t know. My Mom always said he was really sick. I don’t know. The only grandparent who did not die of cancer was my Mom’s Mom. She lived to the ripe old age of 93. She did have Alzheimer’s and  she did suffer a few strokes and the effects of that, but she was not a cancer victim. My Dad is like the main important person in our family. For me, for my sisters, for our kids.  My husband also another victim of cancer used to say, I met you Lisa so your Dad could be my Dad. He is the greatest guy ever. He would say I make my self a better person because I see how much a better person gets loved by his family. He thought he was great, because he is and that is the other reasons I wanted to mention a little of our back story.

My Mom passed 15 years ago, she had heart disease. It could easily be argued that her smoking habit caused this heart disease. I believe she would agree to that statement. I know she was being checked on for cancer but the heart disease became the precedence.

I have seen cancer and the outcomes of it many many times. Seems to me this damn disease has no boundaries. I have seen skin cancer on at least 5 people I know. My Dad included, my sister included. My husbands sister and a few other people I have known. I have seen stomach and lung cancer, I have seen brain cancer I have seen lung cancer spread to brain cancer and breast cancer and well I could just go on and on. Now my own father, my top dog, my superhero dad who always knows the answer and always as a joke to go with your issues, now has this threat hanging over his head. I will add my Dad is approaching 80. He is about to get a pacemaker but his actual heart muscle’s are quite strong, says a very trusted cardiology group so I will believe that the pacemaker, will help him to feel better. But prostate cancer. Docs are saying in beginning and very very good chance as long as it has not spread. Now the days will feel very long until he has those tests and awaits those answers.

It has been only one years since my husband’ s passing, but it has been going on my entire life. I am always grieving the loss of someone. Just recently it has been the loss of the ones I have been closer too. It seems that my little family only gets littler. I wish there was a way for me to be the hero. I could find a way to save my Dad from any ill affects of this disease. I truly believed my husband, could fight brain cancer. I believed he was this guy who could fight his way out of anything, and win. He could win an argument that he is wrong, He can win a fight with a guy, who is bigger and stronger and well he is just Ray. Glioblastoma,  a stage 4 brain cancer is a monster of all monsters. It has tentacle like appendages that grow into the brain, not out like a typical tumor. This disease was found far to late. From every bit of research I did I could not find a way to save him of this horrible disease. If there was a way me and my oldest daughter would have found it . We believed in knowledge is power and we tried. We are naive, obviously but truth is we just loved him. Now I find myself reading everything I can about a disease I know very little about. During all my research it was specific to the disease he had or my daughters medical conditions, as she is special needs. Now I have to learn about this one. I realize that this is different. This has several different treatment options. My sister was with my Dad at this appointment and she said the doctors are very hopeful. They were urology not oncology so again we wait. I have played this waiting game before and I don’t like it. I have no choice though.

My poor Dad, He had to live life after losing his wife. She died right when they were supposed to start really having fun. They raised their family. They had grand kids. Retirement was heading in the right directions and then Bang, No more wife. Enter the widower’s club. A crappy place to be but like anything else , you learn to live again. My Dad was pretty fortunate in that area. He is handsome, friendly, funny and can fend for himself. As a matter of fact my father does not want to be catered to does not expect it and would probably be put off by it.I am glad he lived. He traveled some places my mother was not interested in, that he was. He spent time learning how to be a single guy and I think he did a great job. I continued to be Dad, Grandpa, and brother to his remaining close family and he is an Uncle to many who are well, not so close. He is also a friend. My Dad, has more friends than I could count and I am always so sad for him when he tells me that one is no more. The older you get the more often you will experience that type of loss as death is the only outcome for life. I am pretty sure my Dad has more life to live. His doctors have not led him to believe otherwise. I do not believe any medical professional gives false hope. I believe they base your prognosis on the facts presented to them.

I am kind of overwhelmed by this information though. I think wow why does Cancer just keep on affecting people. My people. I know I am not the only one. I sound selfish, but truly I am not. I am just sad by the fact that my has to feel pain. He has to endure treatments. He has to put up with peoples personalities and after experiencing the amazing radiation tech’s my husband had to the horrible infusion techs he had I know it will be only wishful thinking to expect something totally different, although I will hope for it anyway.

Damn Cancer- You suck Go away already!!!!

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.