What if?.... If I'd have just... Things might be different if....
I wish those phrases weren't even speakable.
So, people- I have neglected you. But hopefully you understand that instead of blogging, I chose to sleep.
Where to start, where to start?
Well since last we met I was on a clinical trial in Canton, feeling like crap, on Home Health (a step away from Hospice) and pretty miserable.
A relief to the misery- My friend, Nancy, came out to visit for Labor Day weekend. I haven't seen her since last year at the reunion. Nancy and I met inthe Navy, waaaaaaaaaaaaaay back in 1995. Wow, can't believe it's been that long. I still consider her one of my best friends even though we go for sometimes weeks without a phone call. We know the friendship is there. Just like when Karen came out to visit, I didn't feel great, I slept a lot and we didn't get out and about except for a trip to the mall on a rainy Labor Day. My husband kinda gave me hell about it... that I didn't give her the grand tour of the Mid-Ohio Valley but Nancy understood. She came out to visit with me- not to go sightseeing. We just wanted the chance to be in each other's company- whether it was on my back porch, on the couch, in the car or at the mall. I miss her already. My Dad took her to the airport when it was time for her to go because I was feeling awful and because I knew I couldn't do 'goodbye.'
Nausea is a bitch. It's the reason-well the MAIN reason- for my ridiculous weight loss. I'd been fighting it forever it seemed. Go back and have a lookie-loo at my posts, and there it is. Over and over again. My hair has been falling out. It's' prettty thin and so am I.
A little over a week ago I was feeling especially nauseous. It felt like there was something stuck in my guts that didn't know which way it wanted to go. I tolerated it for as long as I could and just decided to head once again to the ER. They're getting to know me there and I don't like that one friggin' bit.
After some X-rays the docs come back to tell me there may be an obstruction and probably a perforation. Time to move to a bigger hospital for treatment. Well, if you've read this blog for a while- you'd know there was NO WAY I was going to Ohio State University Medical Center for treatment because that would put me right in the hands of Dr. Arnold again since he's the head of gastro-intestinal oncology there. No thank you. I thought of Cleveland Clinic and told them I wanted to go there- but then I thought of University of Pittsburgh Medical Center where they have a special division dedicated to PMP and told them that's where I wanted to go. My first instincts haven't been kind to me so the fact that I passed on Cleveland Clinic is okay with me. I know I'll hear about how great Cleveland Clinic is- and I am well aware. I am not anti-C.C. - I just made a choice. I was in the ER for 15 hours- UPMC was full and trying to get me a room... once I got a room, it was the waiting game for a ride there. Thankfully my nurse was pushy and got a ride even though it pissed off her higher-ups. We've written a thank you letter.
When I finally got to UPMC they ran tests and yadda, yadda, yadda... "Let's wait it out because you've got a lot of tumor and we couldn't get to your obstruction and perforation even if we wanted to." So bowel rest it is. This is on Friday. No food... just occasional ice chips. There really isn't anything to do about it. You know- I don't know what I think or thought anyone could do about it except a colostomy- but I'm told there might not even be enough bowel to do one and there is just a LOT of tumor. Regardless- I was happy with the doctors and staff. Monday I was EXTREMELY irritated. I wasn't getting answers and I don't know why, but the docs didn't perscribe the amount of Ativan I have been using. Look- so what if it's addictive? it's anti-anxiety. Can I HAVE THAT? Can you just give me the mental rest that I need? Once that was squared away, All was MUCH better.
I talked to the palliative care people... yes, yes, I know who they are. It comes down to wants and wishes. Let's just be real, you know?
I'm on IV nutrition now. Here's the kicker- I FEEL BETTER. I'm no longer on the clinical trial in Canton- no Erbitux which could hinder surgery if I actually HAD surgery. Am I making the right choice? Who knows? If only (there's that phrase) I'd have gone to UPMC on the 13th of May, 2009, things MIGHT be different.
I can't live with that constantly eating at me. But it does pop up every so often.
I'm still here. I don't know how much longer. There are times I feel the clock winding down and there are days I feel like there isn't a damn thing wrong with me.
Regardless- I am taking care of "things" if you know what I mean. That doesn't mean I'm admitting defeat- because as long as people around me believe there is something just around the next corner, I have to keep going.
How do I do it?
There are 2 answers to that question- and they are sleeping soundly in their beds right now.