Thursday, January 22, 2009

Needing Suggestions

Ok, so I've been blogging less than a week now, and all ready I find myself asking the bloggy community for some suggestions! After lurking around on your blogs for a while now, I know I can count on you!

I have a brother, Michael, that I love dearly!
Mike is in late stage 4 kidney cancer with multiple bone mets, and I am his primary caregiver.

We also have a sister, Patti, as well as our children. They help me beyond belief!

Mike had surgery to remove the diseased kidney last September, and is doing quite well physically. He is still taking chemo every day at home in pill form. That being said, here is our problem....

Mike's blood counts tend to fall rapidly, as they do with most chemo patients. When this happens, he becomes pretty much housebound. He is stubborn (to put it mildly), and could go out in public if he wears a mask. Pride gets in his way there...he won't do it! I'm not going to fault him for that. I have no idea how I'd react in his situation! Lately he has started locking himself in his apartment and just watching trash tv all day! I'm talking things like "Jerry Springer" reruns or "Lock Up" for hours at a time.
We are dealing with some real issues with boredom here. Not to mention the depression that goes along with it.

Recently, Mike has had some MAJOR personality changes, and has become quite the "Drama King" ! He calls me complaining over the smallest things (like a girl auditioning on American Idol whose voice made his bones hurt). I know this sounds petty.....but really it's not! I work full time and he has been known to call me up to 20...yep 20..times a day over things like "did you see Obama get out of the limo and walk in the parade" or "Kentucky is ahead by 2 points" ! I do understand that he needs someone to talk to, but sheesh! I am leaving customers to answer the phone for fear he's really sick or something has happened! When he really is sick....he won't call until late at night. That means a trip to the ER insted of clinic.
I've told him that he is welcome to call me at work when he needs me, but this has to stop!

He doesn't listen! He does the same thing to other family members and friends as well. I actually had to double my cell phone minutes because he used 2700 minutes in 2 weeks along with all of my rollover minutes! We had a home phone installed for him, and luckily the bill has been less than $200.00 a month since! He lives on disability alone, so I pay the bill for him. I'm going broke!

Mike is quite the graphic artist, as well as a poet, and a master gardener! He has been published several times, and until a few months ago, was working with a friend of his that owns a screen print shop. He also facilitates a Celebrate Recovery group, and has been active in our church. All of that has changed. He's just quit everything he normally did. He says he's bored with it all. We are trying to find him a new hobby or something to keep him occupied. He still lives by himself, and is not allowed pets in his apartment(we thought a kitty may help). I know alot of his depression is the weather, and I have no doubt that the cold makes his bones hurt more. Once spring gets here, this should all change. For now, I'm really worried!

He has started doubling his pain meds so he can "sleep the day away" and not worry about anything. He's also developing alot of paranoia. I've talked to his doctors about this, and they tell me it's very common! They called it "chemo brain". I didn't know there was such a thing!
The doctors suggested an anti-depressant. Mike shot that down quickly. He does not want the world to think he's a "crazy chemo patient", or take another pill!

I truly beleive that Mike does not realize everything that he is doing, and it scares me!

The other day, he had to go to clinic to get a shot of Procrit. They called him back 4 times for his shot, but he was busy talking to the people in the waiting room and wouldn't go! So they let him talk and took other patients in. When he finally realized how long he'd been waiting for his shot....he threw a fit in the waiting room. The nurse told him that she had given someone else his "slot" because he wouldn't stop talking. Mike heard that as "she gave someone else his shot" !!

Now he's convinced that the nurse just gave him a saline injection, and gave his Procrit to another patient! AAARRRRRRGH! He told me that I'd see he was right when his counts didn't come up the next week.
Well......being that this was his first injection of Procrit, he didn't see much improvement in his red cell count! You can only imagine how that went!

I had a meeting with his oncologist this week. He said that medically, Mike is stable and there is no reason for him to behave like he is. I'm at my wits end! I could handle this if I was dealing with a child, but it's getting harder and harder to explain to adults who have known him for a long time, why he's acting like this. He says he doesn't care! He's a cancer victim, and people need to just let him do what he wants to do!

Has anyone ever experienced this? Any suggestions?? He shoots down every idea or suggestion we give him! :0(


MW Knitgirl said...

Hi Jacki,

Thank you so much for leaving your comment at my blog ( I don't always respond immediately to comments because I need to be sure that whoever is leaving them is legit. Oh boy, I checked your blog and you are legit. What a frustrating time you’re having. :-(

I am so blessed that my husband's attitude is not at all like your brother's. While on the one hand TB has accepted his diagnosis, he also doesn't jump immediately on the bandwagon whenever they suggest he do something. For example, as you probably saw at the blog, they want him to get a tumor prosthesis for the part of his femur that the cancer has eaten away at, but he refuses to do it until spring - we live in a snowy/icy state - that's too dangerous to be on crutches in winter. I completely support him with the decision.

TB realizes that without his treatment - he does not get standard chemo, he's participating in a clinical study - he would die much sooner than without it. He still loves enough of life to not give up though I do see signs of depression once in a while and he’s terribly forthright with people, he does not hold back on his opinions or comments. Sometimes it’s embarrassing and even offensive but on the other hand, I’m not the one dying.

His main occupation right now is looking forward to spring (not for the surgery, just for the change in weather). Then he can sit on the deck in the sunshine – I call him the Tan Man – give him 20 minutes and he’s tan. Guess it helps when you’re half Italian. Unlike me who's as Scandahooovian as can be. I just burn.

My husband is in a different ‘place’ with his cancer than your brother, I don’t mean stage, I mean how it physically affects him and how he deals with it. He’s not in much pain other than the bad femur/knee that needs replacement so takes no pain meds at all. He sometimes has issues like saying one word but intending to say another, but the doctors say his brain is just fine. Go figure.

Since September what I’ve discovered about kidney cancer is that kidney cancer is sneaky, mean, and evil. It hits every person diagnosed with it in a different way. Your brother has been hit hard and fast and I wonder if it’s just been too much for him to deal with in such a short amount of time and that is what has affected his ability to deal with it.

From what I read he’s a very smart and talented individual and I have a feeling he’s not bored at all, I think he wants to keep doing these things longer than the cancer will allow him. Once he's gone, those artistic outlets will still exist but he won't. Maybe he thinks what’s the point in continuing then? I’m not a shrink, this is just my very humble opinion.

You take care of yourself and don’t beat yourself up because you can’t seem to get through to him. I feel just like any other obstacle we’re presented with, sometimes we have to hit rock bottom before we realize that the people who love us are only looking out for our best interests. He loves you, he always will. I hope he’ll come around. Feel free to contact me anytime. My email is at the cancer blog.


Jane said...

Dear Jacki,
What an incredibly brave and strong lady you are trying to cope with this situation on your own. When we are first diagnosed we all react in different ways - I know for me being able to chat or email other Rcc sufferers helped enormously. Does Mike have internet access? If so point him in our direction. There are many blogs/message boards online. Or give him my email address. Just being in contact with someone who is going through a similar experience may help.
It must be terribly hard for you so make sure you accept all the help that is offered - and ask for help if you need it.

Keeping you both in my thoughts and prayers,