Hello my fellow warriors.
In the theme of this week I felt like it would be a good day to get you all up to speed on where I’m at medically in my journey. I know there are a lot of questions out there and hopefully this will clear some of those up. It my create more. I’m not sure. We’ll just have to see.
Well, for starters, I’m still alive and I still have cancer. Yep. I am still kickin, but that shit is still there.
Obviously the GREAT news is that I passed that whole “few months” prognosis back in October. And the good news is that my tumors have been stable. Yes, that’s actually good news. The cancer can either be responding to treatment, stable disease or not responding to treatment. As long as I keep going with the first two, things are alright. Of course I’d rather be responding, but I’ll take any good news I can get.
The not so good news is the complications that triggered the poor prognosis in Oct. I’m going to try to explain it best I can. I’m not even sure I understand all of it.
So I think I’ve got you up to date on everything except why I’m still here. Right? I don’t remember even mentioning here that back in November, UCSD ended up agreeing with SHARP on the crappy prognosis, so my hopes went straight down the tubes for awhile. I was DE-PRESSED. Had to really start putting my affairs in order. My family staggered visits out to spend some time with me.
It was great spending time with everyone and it really took my mind off of everything, believe it or not. I did have to have some tough discussions with everyone, but we got through them and it was all still OK some how. We never let that bleak outlook get in our way. We went to Disneyland, Mexico, golfed 18 holes, ran the dog at the beach. We just did it. I did it.
The weeks went by and somehow my numbers popped back up enough for me to continue chemo. Not at the full dose, but any treatment is good treatment, I think. My numbers continue to be the same and we just keep going with it. My oncologist seems to be a little stumped, but hey! Good! Cause I’m here and I feel great and I’m out doing doing stuff! The dog, my love, has been getting me up and out. I’ve had more exercise with her in the last month than I have in the last year. She just has to look at me and I’m leashing her up to go.
So at this very moment, here’s what I know about my medical conditions:
I still have portal hypertension. It doesn’t go away. In a nutshell, the portal vein is a big blood vessel that goes through the GI tract and spleen to your liver. This blood carries the nutrients from food to the liver to process and filter toxins. So it’s pretty important and when it gets backed up, really bad things can happen. You can read more about it here
—-> Portal Hypertension
When I was first diagnosed, my cancer was quite advanced and I had a lot of tumors in my liver. A lot. So much so that he wasn’t sure I would make it through my first month of treatment. But obviously, I did. And I kicked ass. I kicked so much ass that I was left with a bunch of scar tissue in my liver. The scar tissue started backing everything up which caused the pressure and the whacky vein issues I was having and why I was spurting blood out of my stoma. All related to the portal hypertension.
Now, my spleen is enlarged because of it. Apparently it’s like twice the size it’s supposed to be and that’s what likely is eating up my platelets and keeping my counts down. If it were just the cancer I was trying to fight, I’d be the A number one ass kicker! I might’ve even had a clear scan by now. But it’s this damn complication that has made everything 10 times more difficult.
Basically, it’s all the scary shit that could happen from all of this that I’m trying to not think about. I TRY to eat healthy (still battling that one, but doing better). I try to get up and out and I try to stick to a routine as much as I can. I’m trying to just enjoy life and do as much as I can while I’m still feeling healthy and I’m able.
That’s where I’m at physically.
Mentally? I’m a bit all over the place.
It’s hard to not think about it sometimes, but I just have to. Otherwise I would be a basket case all the time. I still want to believe everything is going to be OK. I wanna know that I have 3, 5 or 6 more years even, but I likely don’t. I feel like I’m going month to month right now and I might feel that way for the rest of my life. I hate it, but I don’t know how to not think about it. Part of that has to do with watching two dear friends in the same boat I am pass on recently.
It’s all very hard and I don’t want to talk about it much. I’ll talk about it, but I don’t really share my deep stuff. The REALLY deep stuff, like, how I’m feeling about what my last days will be like. Will it be fast? What happens next? I imagine I’m having the same very normal thoughts a dying person has, but it doesn’t make those questions, or the answers to them, any easier to know that.
I have a hard time getting to sleep. It’s been going on for awhile. Trying to make myself get to bed, but it doesn’t always happen. Like tonight.
So yeah, I need to get my ass to bed.
I think I’ve pretty much covered the basics. If you have any questions, ANY questions at all, feel free to ask. I don’t mind. I will likely always answer. If for some reason I don’t want to answer, I’ll tell you, it’ll be all good and that’s OK.
I’m looking forward to more adventures. Please, lets plan them.
If we work together; if we summon what is best in us, with our feet planted firmly in today but our eyes cast towards tomorrow – I know it’s within our reach.
God bless you, and God bless all the warriors!