Monday, May 20, 2013

Hard Times

Well, I'm forcing myself to write tonight because I know it's been way too long and some family members have reminded me of that recently.  I guess you could say that the main reason I haven't written lately is because there hasn't been much good to write about unfortunately.

I'm saddened to say that my stepfather Rich has passed away.  He got hit again with some kind of infection that landed him in the hospital and he ended up with c-diff.  They tried everything but in the end, his body was too weak to fight any longer and he passed in the hospital with the immediate family in the room.  I couldn't stay in the room to watch his final breaths, it was just too much for me to handle losing so many friends with Hodgkins over the last few years in very similar circumstances, being intubated...  So, right before they decided to take the tubes out and let him pass, I shook his hand and thanked him in my head for everything he's done for my family, especially my Mom and Nicole.  He was probably the nicest guy I've ever known, caring more about the welfare of others more than his own ever since I've known him as he married my Mom over 20 years ago.  I learned so much from Rich, he was a great Man, a throwback, one of a kind.  He is going to be missed by a lot of people. 

This is a sad story but a testament of what kind of guy he was;  As I've written previously, my sister suffered a stroke.  Unfortunately, she hasn't improved all that much and I will elaborate on that later.  Anyway, she is going to be in a wheel chair for a good while and knowing this, Rich sold the beautiful place that they were very comfortable in to a more modest single level home that needed work.  He had been in and out of the hospital several times at this point and I know he didn't need the extra stress.  They got that place fixed up and right before the move, he ended up in the hospital and never got to the chance to come back and sleep in his new home.  A lot of the work that was done in the house was to accommodate Nicole.  He had guys widen the bathroom door and her bedroom door (when she's able to come home) so her wheelchair would fit through.  He also had the guys put in wood floors instead of carpet so she could get around in the chair.  I can't say enough about how grateful I am that he came into our lives just over 20 years ago. 

So I touched on Nicole earlier and it's unbelievable what she's been through.  She literally had a hole in her head left over from the initial surgery that was left to be exposed to whatever got near it.  I looked in there when she was at the nursing center and you could see a screw sticking out, I knew something was wrong there.  So, they finally got her to see a plastic surgeon who took a piece of skin from her thigh and sewed it onto the middle of her scalp, lowering her skin over the hole.  She now has a reverse Mohawk that is going to stay like that for a year until they can blow up the side of her head and pull the skin back together.  It is a pretty painful procedure from what I know and I can't believe she has to go through more than she already has, it's never ending.  When we visit, she tries so hard to get words out that it's painful to sit there and watch.  I know they have her on medication to help her mood and I'm so thankful that something like that is available as I don't know how she could cope otherwise.  I know I get frustrated if I get tongue tied but to not be able to get a word out except randomly would make me go crazy.  She also has Apraxia which means she can't connect her thoughts to any form of expression as of yet.  She's taking baby steps with spelling her name and the abc's but it hasn't gone much further than that.  As I mentioned the house earlier, we hope that she will be able to come home but if she stays like she is now, I don't know how it can happen unless a full time nurse came to the home 7 days a week.  Medicare/Medicaid won't pay for that I'm pretty sure so it's scary and depressing knowing that there is a chance she may have to spend potentially years in not so nice places.  I know that if anything happens to me, everything I have will go to getting her a full time home nurse.

Needless to say, things are a bit grim right now but somehow, some way we will figure out how to carry on.  The final issue now that has been not ignored but put on the back burner is my Mom's relapse of her breast cancer.  She has gone over a month dealing with everything from my sister to the move to Rich and now it's time to turn the attention to making sure she gets the best treatment.  We have an appointment on Wednesday at my cancer center Karmanos downtown to find out exactly what type she has now (the initial biopsy was inconclusive but there is suspicion it's changed types).  We will find out then what the plan is but it will surely involve more chemo and I just can't believe this is happening...

Doing my best I suppose to maintain my sanity, I had a CT scan last week and I don't even care what it shows.  I'm feeling ok but could as usual use more energy.  My main focus now is to take care of my Mom and Nicole the best that I can. 

As always, thanks for reading and caring.  I desperately want to write about something fun and uplifting and know something good is going to happen to us soon.  Until then, it's breath by breath, trying to find little pieces of positivity in small things like the sunset tonight and the warm temps that are coming in.  Stuff like watching all the stuff I planted last year bloom like the baby cherry blossom trees in my front and back yard.  Spring is supposed to be healing so here's to my Mom and Nicole healing and my continued relative good health on this clinical trial.