Let’s see – a little background- we are originally from Buffalo NY- moved to the Tampa area (Land O Lakes) 4 years ago- we have been together for 33 years will be married 29 years in June. We have 2 children- Alexander- 25- He is an air traffic controller in Oleatha Kansas Center. Madeline who is 22- she is graduating from Florida Atlantic University in Boca May 3rd. I’m an only child and my father just died November 11th- he was diagnosed with stage 4 stomach cancer Labor Day weekend….
This marathon began January 14th- I had just returned from a trip up to Buffalo, NY- to check on my mom. He started acting strange- by strange he started going into work late- he normally was going in at 6:15a- he started leaving at 9-9:30a- when I questioned this he kept saying everything is fine. The following week he was sent home to “work from home”- now this is not unusual he has worked from home before- however it was unusual for him to be sent home for an entire week. Again- I questioned this and he assured me “everything was fine”- the Following week is when things got very strange- he started staying up all hours – going into work at 11-11:30a- I knew this because we have cameras on our driveway. So I really started to worry and question this change- nope everything is fine- Friday February 1st I came home for lunch and he was just getting in the shower- I asked him what was going on- he said my job is fine I said you can’t just come and go as you want- no matter how much they like you- I insisted something was going on and explain what is going on- he said nothing is going on everything is fine- he finally left at 1p- was home by 4:30p and I just knew something was wrong . I came home and noticed his work phone was not in the usual spot- I asked- where’s your work phone ? He said- it’s at work- I said why is it at work- he said I have to find a new job. I immediately went into anger mode- I asked a bevy of questions and he could not explain anything to me- so now I’m thinking he’s being an asshole.
I called his buddy from work hoping for some answers- he said they noticed the change- he wasn’t explaining anything or communicating at work- I knew right then something medical was going on.
He basically then started staying up all night- sleeping all day. Not eating not showering- he could not explain anything when I asked him it he thought this behavior change was ok- he said yes. I was like NO ITS NOT!
I flew his mother down she was here for a week and didn’t do shit- I sent her home.
I called his doctor and set up an appointment I explained what was going on- she called me back and said she will talk to me- him & both of us- we go to the appointment and 30 minutes later he walks out with a script for blood work- diagnosis “sleep disorder” and go talk to a therapist-I was like what just happened here? I never saw the doctor and that is a whole other story… I was furious. I kept calling her & emailing her- I was in a crisis situation with him – when I finally reached someone she told me because he did not sign the hippa form they won’t talk to me… and she hung up on me- don’t worry- I’m not done with them just yet…. I’m currently looking for a medical attorney out here…
So now I told him on February 27th that if he didn’t call the doctor find a job – fill out the cobra information- things were going to drastically change on Friday- which was March 1st. Things were not good- he lost about 40 pounds- wasn’t eating- sleeping all day up all night- I was getting more angry by the day. For weeks I tried to get him to call the doctor- go to the ER- anything he refused.
I had been waiting for Madeline to come home for spring I needed her to see him- and what he looked like- she came home on Thursday and she said – we have to do something… Friday morning March 1- we gave him an ultimatum- go to the ER- or I was calling 911 & have him Baker Acted- we went back and forth for 20 minutes- I had no choice I called 911… we had to go to court to file the paperwork it was approved in 2 hours- that was fun… the sheriff came back and took him to a “mental recovery” hospital- we all thought he was having a mental breakdown or midlife crisis…he was there for a week and I finally questioned the doctor- I said we are getting no better and nowhere closer to an answer- I think he needs an MRI- we are missing an opportunity…. The next day they sent him for an MRI it was Saturday morning- within 20 minutes they called me back- they found a mass- it’s very large – they are sending him to ICU neurological hospital in Clearwater.
And he was so out of it- he thought we were at our first house 26 years ago – he didn’t know he was in the hospital- we had the biopsy that Tuesday after the dye MRI… which basically confirmed everything. glioblastoma stage/grade 4.. – it started in his frontal lobe then spread (butterflied) to both sides.
The frontal lobe controls reason logic personality-that’s why he couldn’t explain anything- he literally couldn’t..
..As the steroids kicked in he became clearer- meanwhile I obtained power of attorney & healthcare surrogate early on.
He was fired from his job- I won the disability claim with them – this after of course I stated that his medical rights were violated as they knew something was wrong but just fired him – as there was an underlying medical condition that caused the change in his behavior- I also stated that I will place a charge with the EEOC… the next day I got the paperwork via UPS – which they so conveniently filled out for me. I also got him approved for social security disability- which was escalated and approved quickly- at least someone had their head screwed on right. I’m not done with his ex employer either- I’m speaking with a different attorney for that …
We were initially at one hospital- and the misinformation and miscommunication we experienced was mind blowing- so we said we were going to Moffitt Cancer Center… I had one nurse tell me I’d have to pay out of pocket for his chemo & radiation- when I brought this up to the one doctor he was like- that’s not true- why would she say that? I said I don’t know… she’s YOUR NURSE! So yea- we are much happier at Moffitt.
That was another disaster- health insurance – he never filled out then COBRA forms so I had to as he was in the hospital and of course nothing was fast with them – so we had all these bills and finally the insurance was “active” I then had to make a million calls to have them go through the insurance.
This is not the man I knew – he’s not the man i knew- his steroid rage makes him hard to love sometimes- I know I can’t take this personal however it’s hard to not. He has never raised his voice to me in 33 years- now that’s all he does sometimes… definitely hard… i don’t really like who i am now – I’m angry – frantic- trying to stay on target with all of this- balancing work- the house- the kids- his crazy family- (they are crazy) when this all started they attacked me & my kids- when this was a mental issue it was my problem- now this and it’s my fault… when this is over I never want to see or hear from them again- they will just fade away anyway- I’m good with that.
I know what’s coming… im just not sure if I’m ready for that or how i will deal with that…
I have a real problem with God right now.
But.. The sun has risen and we will try again….
The surgery went well- according to the doctors they removed 90% of the tumor plus more. What was supposed to be 2-3 hour surgery turned into a 5 hour surgery. It was a very long day for everyone. Chris was awake and responsive after- he came home the next day in the afternoon which is when all hell broke loose. I dropped him off then ran to Publix (grocery store)- spent an hour and a half waiting for his 5 scripts- only to get home to realize they forgot the OxyContin. Now I’m furious so I call and had to go back. When I picked up the pills I told the pharmacist- my husband has stage 4 brain cancer- I don’t have time for incompetence- get your shit together! And I left… My patience level is null and void..
The next day- Chris was on the computer all day – literally- physical therapy came so did the walker-which needed when we got home- however it wasn’t here- he hasn’t needed it since-$100…. He seemed ok at this point. However he stayed up until 2a- Friday- when he woke up at 5a to take meds he started to give me a hard time about it he also looked terrible- he had dark circles under his eyes and his color was not great.
Friday was not a good day he was very combative and uncooperative with his meds. And I think the OxyContin was doing a number on him- He basically was fighting us – not taking them on time- basically the Dex. (Steroid) we tried to tell him there was a reason he has to take them on time-He also was not resting- he basically sat at the computer for 2 days doing crazy things like applying Madeline into an MBA program in Denver. It turned into a whole dramatic thing she kept getting emails & calls about her application- it took her hours to get out of the schools system. There was a lot of yelling and it just started spiraling out of control. We were all worried that he had swelling because he was sort of acting like he did back in February- just not as extreme. I did put in a call to the doctor- I was worried that he was released too soon. Saturday he was much better- we all were- I feel like I never know what is going on or going to happen everyday it’s something new.
My moms been here since March and I’m sending her back to BUF Tuesday- it’s just been too much – she’s still dealing with the death of my father and this situation has just been crazy… the stress level in the house is suffocating at times- Something had to go- and it’s her. I told her I appreciated all her help but I cannot have her all upset all the time. It’s just not going to work. There is a reason why I moved out of the house and got married at 22.
I’m spread way too thin- I cannot take care of him, her, me & The kids- they are older but I’m still trying to keep them grounded with this whole thing. One minute they are ok- the next they are a mess. I keep telling them Hope is great- but this isn’t going anywhere- the tumor will grow back. This surgery isn’t a cure. This is just a bandaid. We have to go through radiation and chemo and all the fun that comes with that next.
We all definitely need some space between us- it is a must. We are all angry, worried & frustration and it is getting the best of us.
His family is insane- literally- I’ve had to cut them off with myself- because it’s angering me and I don’t have time for their bullshit.
His mother is coming down for a week I called her Friday night & told her to get a hotel room- I cannot have this chaos here anymore. I actually called her back later and said it may be best if she flew into Lauderdale for the graduation- I just cannot have all of this going on here- she is pissed but I really don’t care. We have had people here for over 2 months- our house is not that big- it’s also a ranch- so we are constantly walking into each other. The thing with his family is whenever anything traumatic happens it turns into all about them. She kept saying “what I want”- I kept telling her- this isn’t about you! This is about me- and the chaos that has been going on. She still doesn’t get it. I felt like saying- where were you when this whole thing started and I flew you down? Oh that’s right- she didn’t do a thing and she had to go back because she had “obligations” back home. So now that I’ve taken care of all of this mess thus far – now you want to come down and play nurse (she was an RN)? That’s not how it works. All I’ve had to hear about is how “she doesn’t know where to go”- there is a hotel a mile away from the house- she also stayed in a tent during her Africa trip- she can figure it out. Everyone I talk to about this agrees – except for her and the rest of them. I don’t want to get Chris worked up about this however I think he deep down agrees this would be for the best. I think she feels like he’s going to sit and talk to her for a week- yeahno- in addition we have 3 appointments to go to while she is here and one just happens to be on the day she flies back.
Trust me if she doesn’t do as i asked this will be the most difficult and uncomfortable visit here for her- I will make sure of that. I’ve dealt with 33 years of his families bullshit- no more those days are over. Chris comes from a family of 11- so there is a lot of them and they are all crazy.
We took the bandage off – holy hell that was a shocker. The incision literally goes from one side of his head to the other. This we did not expect- none of us – including Chris. Can’t do anything about it- but still we were told one thing and of course it turned into another. He looks like the walking dead but worse.
So onward we go. I feel like I’m just waiting for another bomb to go off in my life. I’m going to talk to a therapist this week. This is at the request of my kids. I’m not big on therapy- however I do feel this is probably a good idea. I also need something to take this edge off. I have high blood pressure as it is. It’s just a matter of time before I explode- and not the good explode kind. The bad one… I can feel it brewing.
I will say that with the mere fact that my mom is going back to Buffalo- it was almost as if there was a lift of some pressure. We all feel it. It’s not much but it’s some. As sad as I will be that she’s going back- it’s definitely been trying toward the end. For all of us. Including her.
I’m going back to work tomorrow- I have to. I have to somehow get my mind on other “stuff”- My boss has been great- one day I will do something nice for him- besides give him a hard time.
To be continued….
Lisa Rudewicz | Caregiver | Glioblastoma