Monday, August 17, 2015

Wow, I just remembered I have a blog haha

Well, all I can say is it's been an interesting life these last several months...  Let's just say I ran into a few bumps in the road. 

I can't remember where I left off and I failed to check before I decided to start pecking some letters with my thumbs on my phone.  My hope is twofold, first,  to catch any remaining readers up to date and secondly to try and write myself to sleep. 

I was sailing through my nivolumab treatments with relative ease (accept for the usual issues) when my liver decided to blow up.  My enzymes out of the blue went through the roof causing damage and requiring me to get on 200mg of prednisone a day.  All I can say is my life will never be the same, and unfortunately not in a good way.  Fortunately my liver counts resolved but with no real guidance in how to mange the steroids and their multitude of side effects (I think I had every one of them) things got pretty bad there for a while.  They got even worse when I started waning off of them, bad enough to where I found myself in the hospital three separate times.  I experienced pain that I didn't think was possible to sustain but somehow I was able to get through it.  From my lumbar area to my clavicle, I had some kind of crazy infections that were finally diagnosed as osteomyelitis and discitis.  Still don't know what happened with my clavicle but I'm sure it was a variation of the two said conditions.  After a recent treatment regimen of 6 weeks of continuous penicillin IV infusions, the beast is finally gone and I can walk again (I wasn't able to stand or walk for several weeks).

Thank God that's over...  Now that I look back, there was no way I could've kept up with this blog if I tried being in that much pain.  There was no way i could focus.  Truthfully, I didn't think I was going to come out of that.  I started accepting that my life was going to be me laying in my back in bed trying not to move for fear of sharp shooting pain going up and down my spine and throughout my body.  I still can't believe I'm laying here now able to move around, get in and out of bed with no problem, walk around mostly pain free, God is good man...

I learned a lot about who my true supporters are and to those people I'm truly grateful.  I also learned that some people that I thought I could count on had trouble cutting me some slack when I was going nuts from the prednisone or had a short wick from being in so much pain.  I learned that despite what I went through that my dad could still give a shit about me. This of course is nothing new but I just wanted to document it.  It's actually really sad to be honest.  You hope that out of all the people in the world that you would hope to be able to count on that your father would always be there for support.  Instead, he threatened to throw me out of his car on a highway on the middle of winter in Detroit on the way to treatment.  Who does that? This follows a series of dubious events starting with not hearing from him my first month in treatment as he and his wife sipped margaritas in cabo (he said they couldn't afford the phone call), having to convince him to come out to Seattle to be my caregiver (his new dime a dozen part time job as a driver were more important at first).  Then the completely insensitive comments like "why can't I joke around", never once asking how I was doing during my worst times acusing me of being responsible for what happened to my sister and still bullying my poor mom after all these years. There is no putting your kids before yourself in him.  I don't know how many parents would be more concerned with themselves when they have a daughter or son suffering from cancer.  First with my sister and now with me.  I've been quiet about this for a long time but it's going on 4 years now and after a while, it doesn't matter.  It's obvious he doesn't care and is too week to suck up his foolish pride and apologize for being a lousy father through all of this.  I still love the guy and always will, he's my dad but I'm done with always being the one to extend an olive branch after a fight (usually me defending my sister or mom which he never wants to hear). I can say this for my mom though.  Despite her herself battling cancer, losing her husband, my sister having a stroke and her doing mostly all of the caregiving and trying to improve her life while my father does the bare minimum. Not sure what I would do without my mom, she does her best and that's all you can ask for.  Thank you mom!

So, with all that said and released from my chest, I just wanted to thank any remaining readers, even the psychopath tea party nut job that I will still refrain from saying his name unless he decides again to wish death upon me because I don't agree without his political viewpoints.  Seems like that's the preferred stance of guys like him, if you don't agree you aren't worth a shit!  It's funny and sad at the same time.  Funny that he or they would take something like politics so seriously and sad that he would let it bring him to wish death upon someone who disagrees with him.  That was really something else, makes me wonder how many other wackos are out there like this dude.  With political season already in full swing, we will see how many wackos come out of the woodwork this time around...

Well, it's getting to be that time, Mr sandman has arrived I think, thank you sir.  And thank you blogspot for giving me this outlet to express myself, to blow off steam, to let other survivors know they're not alone.  To those survivors, I hope I haven't let anybody down by not keeping this up to date.  I'm sure most of you can understand if you've been through any kind of shit that comes along with refractory Hodgkins.  Reminds me, just noticed a few new relatively known people being diagnosed recently.  First, Flip Saunders who used to coach the Pistons.  Not sure what stage he has but good luck to him, seemed like a nice guy... 

Alright, I'm fading out, thanks again for reading.  Stand up to Cancer!  Don't ever give up!


Friday, February 20, 2015

Where did the last month go?!

Well, guess its time for an update, cant sleep which isnt anything out of the ordinary as I havent really been able to sleep for over a month now...

Mid January I went in for my nivolumab infusion thinking everything was kosher and after a long wait in the room, dr came in and told me I wasnt getting drug that day, in fact, I'm going to need an infusion of prednisone stat as my liver enzymes were out of control, my AST was almost 20 x higher than normal.  My own body was attacking my liver.  It happens with this drug sometimes, it mimicks gvhd for some reason even though I've never received someone elses stem cells. 

So, I was on 200 mg of prednisone every day, what a trip...  The time I was on that dose is a total blur, literally.  The side effects were horrific.  Imagine wanting to jump out of your skin at all times of the day, heart racing constantly,  not knowing weather I'm coming or going, not able to think straight and having an appetite of two or three of me!  I would wake up from a hazy half sleep needing to eat to re-enter that same weird almost sleeplike state at night. 

Then the cramps started....

This was the worst part by far.  Its still happeing now but nowhere near as bad as it was.  For a little while there, the cramping or uncontrollable contorting of my hands would last for hours on end with nothing I could do about it but bear the pain and try to do whatever I could to counter whatever contortion was happening at the moment.  For instance, if my hand was locking up, I tried to pull my fingers back into place.  It was futile trying to fight it but there was nothing else I could do.  I discovered icy hot helped a little to loosen the muscles but it became too much after the third night of zero sleep and I decided to start reducing the prednisone dose earlier than scheduled, at that point I didnt care what happened to my liver, I couldnt live like that...

Good news is I just went in last Monday and thank God, my levels are starting to resolve and I'm down to 30mg of prednisone now which is so so much more manageable.  I still have the racing heart and an episode tonight of cramping in my abdomen and back strangely but I think it may have been a hydration issue instead of prednisone side effect.  Who knows actually, I have come to expect the unexpected regsrding side effects with this crap.  Cant wait till I can wean off completely. 

So I'm taking a break obviously from treatment while my liver recovers and the hope is to resume asap with reduced dose and hope my body adjusts as the drug works for me at the moment and with generally mild side effects if you remove the liver damage situation haha.

Life otherwise has been good.  My family is more stable, Nicole is slowly doing better, my Mom is doing much better, so proud of both of them for what they've been through, all of us actually, crazy what we've all been through.  Makes the wins in life so much sweeter when you've struggled so hard to get to ground zero...

That's all I've got for now.  Thankful for everything I have - most importantly my health - which I treasure every day that I feel ok.  I am truly blessed.



Wednesday, February 11, 2015


Has taken over my life for more than a month.  Ready to be done with this shit and onto the next chapter of my life.  Will go into more detail and recall what I can remember when I'm ready.  Thanks for checking in and all of your support!