Monday, October 24, 2016

I've come a long way...

Alright, I finally have some time to write, something I've missed but I've been kinda busy with life so I've been slacking with this blog.  By the way, to anyone who still reads this, people who have been following me and rooting me on and some that have been waiting for me to bite the dust because I may not agree with their politics (I know, crazy), I just want to thank you!  It's always nice to know you have people supporting you and the kind words I've received from so many people have gotten me through some dark times and the ones who have  said nasty things to me in the comments section, all I can say to you few people or person, you actually inspire me even more because you are the cancer and it gives me even more pleasure living my life knowing it's annoying you that I am!  My skin is way too thick to allow negative people to affect me, I've been through way too much to be bothered by any of that nonsense.

Enough of that...  To those that follow this and are dealing with Hodgkins, are a caregiver or know someone, please know that there is great hope on the horizon.  It's called Immunotherapy!  I can't explain what happened because the doctors I've talked to can't explain it to me but somehow when the drug caused my immune system to turn against my body, specifically my liver, and subsequently my spine and collar bone for a dark period of time a couple years ago, something was happening to my DNA.  Even though I could've died with my severely elevated liver enzymes, both markers 3-400 times higher than normal, and landing in the hospital a few times to help me manage the pain from the spinal infection (osteomylitis/discitis) as well as my collar bone area puffing up like a tennis ball because a piece of my Hickman catheter was left in my chest when they yanked it out of me, I had no idea that I would emerge from that miserable 18 month time in my life that is now mostly blurry in remission!  In fact, one of the doctors, I think Dr Chen is his name told me I was going to die when I was in the hospital for a second time due to uncontrollable constant 10+ pain, what a guy!  Thankfully my real oncologist told me he thought it might be an infection and thankfully he was right. 

So, according to this same doctor, I guess I'm the only one he knows that's been able to flick my immune system back on this long to recognize the Reed Stenberg cells again and destroy them.  Modern science is something else, if this was even 5 years ago, there's a good chance I wouldn't be writing this post...

While all this is of course great, I've found myself struggling with the post effects of the constant pounding I took and always being dug in to fight and lately or for a while actually, I've been wrestling with ptsd which is no joke.  I haven't been in a military war but I've been in a war for sure, something I didn't volunteer for and I fought the battle for over 8 years dealing with every imaginable horrifying, uncontrollably painful, knock you out, keep you in bed for weeks, life stopping, mind wrecking bullshit.  I can't say that my ptsd is the same as a soldier's, I can only imagine what that's like after seeing and constantly hearing/fearing day after day after day, witnessing unspeakable things.  I can say that my experience is very similar though, seeing your friends who have the same disease you have dropping like flies, so many I've lost count.  It's always in the back of your mind thinking  but that daily pounding from the physical/mental pain, seeing a friend one-day then finding out only a few weeks later she's gone, having lunch with another friend and finding out only a few months later he was gone.  I've had that happen at least 6 times and each one of them were awesome human beings.  I feel so blessed to still be here and I don't take a second of it for granted even though the cancer has left physical and mental scars I'll deal with the rest of my life.  Hell, when I found out my primary treatment failed and my cancer grew despite me getting 4 chemo agents at the same time for six months, according to statistics back then, the odds of me living more than 5 years was less than 20%.  I thought for sure I was a goner.  Somehow though, through modern science and the grace of God I've been able to outlive my original prognosis by 6 years and counting.  I realize how blessed and lucky I am every day of my life and will never ever take it for granted.  It's the greatest gift anyone could never receive, life!

So despite the ptsd and the physical issues, I've managed to keep myself busy with working on my house, doing part time jobs, and trying to stay in relative good shape.  I'm also thankful that I bought long term disability coverage from my employer at the time that has allowed me to live a modest but fulfilling lifestyle.  Last winter I took out a loan from my house and bought a little camper, I used it all last winter to camp at various places in Florida I've never seen and plenty of Walmart parking lots!  I managed to find a much much nicer camper than my Lil 13' Scamp and now I'm styling with a 17'7" Riverside Retro camper that was basically the same price as the Scamp!  In fact I sold the Scamp I bought used for a profit after using it all winter.  Those things are good investments, they obviously hold their value.  I won't miss that thing this winter though as I sleep in a queen size bed and have a microwave, full fridge and freezer TV hookup, bathroom, shower etc. everything I need to live on two wheels!  I'm pretty excited to see some places I haven't seen, maybe on the Gulf side this year, I've never been on that coast and looking forward to checking out several places from Tampa down to Ft Myers and wherever else it's nice not to mention another visit to my cousin Ken in Key West.  It's going to be much safer for me to tow now too after I was able to get out of my lease on my Ford Escape and into my first pickup truck, a bad ass F-150 with the crew cab, 4x4 and everything I need for less money than the Escape!  I guess there's benefits to buying a locally made product and using the Ford employee discount plus crazy rebates.  I don't know if people can get the same deal in other states but if not, it's worth a trip to Detroit if you're shopping for a truck.  It's taking me a Lil bit of time getting used to such a long car but every day I'm liking it more and more and today I did a gas mileage test on the freeway and I got 26 miles per gallon, I was shocked.  The engine is only a 2.7 liter V6 but has twin turbos I guess and the truck is aluminum so I think when towing I'll get better gas mileage than the escape (I was only getting 11-12 mpg in that thing) while hanging on for dear life as that car was way too small to be towing any size camper let alone an 18'!  I can't wait to be able to relax while I'm towing down 75, I've had some hairy experiences prior to this truck I'll just leave it at that.  I'm so glad I can feel safe after as hard as I've fought to get to this point, I kept on thinking how bad that would suck to jacknife my camper or worse have it sway into another car or oncoming traffic.  I've needed diapers a couple times going through that lol.

So, other than that, I just wanted to say to anybody who's reading this and has stubborn or refractory Hodgkins like me; as bad as things may seem or get, just keep going, don't give up as painful as it may get or hard it is to get out of bed sometimes, you never know what the future holds, the key is staying alive long enough to let science catch up with your disease if that makes sense.  And don't let your doctor talk you into an allogenic transplant, they don't work for Hodgkins, only non Hodgkins at any respectable risk reward percentage.  A positive attitude will get you far in life but will also help you survive cancer.  You don't have to be positive all the time, that's unrealistic but keeping a generally positive outlook and not giving up are the two most important elements to survival when fighting cancer.  It's gotten me to now and in November, it'll be 9 years since I was diagnosed out in Seattle.  There is hope to anyone out there who's just relapsed and stumbled into this blog, I'm living proof.  Most of it is documented in the prior posts.  I hope this blog continues to inspire even one person who might be freaking out right now after relapsing for the first or second time, I know what that feels like and how powerful it is to read success stories amidst the horror stories and cold statistics.  As a wise survivor told me when I was getting treatment In New York on a clinical trial, percentages don't mean shit, you're either 0 or 100.  Focus on the 100 not the zero.

I'll try and write a little more than I have recently.  It's taken me a while to get myself together after such a long battle.  Each day seems a bit easier but I'll never have the luxury of knowing it's gone forever, it could come back tonight while I'm sleeping, you never know.  The key is to just keep going, living...

Cheers and thanks again for reading,

Chris

Tuesday, October 4, 2016

Hello!

I just wanted to let anyone know who's still around out there that followed me during my roughest times that I'm still alive!  In fact, I've somehow managed to get into remission from a new drug called Nivolumab.  I apologize for not writing but I've forgotten about cancer for a while (great thing).  I plan to wrote a good long post when I get a minute to explain what's been going on.  To anyone who's found this and getting ready for a stem cell transplant or even just starting normal therapy for Hodgkins or any cancer, I think you'll find this story to be uplifting I hope, no always happy but it's a marathon not a sprint so hang in there!

Chriz

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!

Chris

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.

Thanks,

Chris

Wednesday, February 11, 2015

Prednisone

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!

Chris

Tuesday, December 23, 2014

Dealing with chronic fatigue

I may or may not have written about this before but since it's been a pretty major struggle lately, I thought I'd release my frustration out into the blogosphere... I just don't have any energy, period. I wake up, drink a strong cup of coffee and the first thing I want to do is go back to bed, no bueno. It wasn't like this when I first started the Nivolumab but think the cumulative effect of now 5 treatments has built up in my body and fatigue is the number one reported side effect. I guess it could be worse, I could be puking every day, losing my hair or other not so fun side effects that I've dealt with so many times over the last 7 years...

I have some ideas in how to mitigate the problem but they'll take time. One is more exercise but with such little energy (I mean it's really difficult to get out of bed) how does one motivate to go to the gym? I've been able to overcome things like this before so I will get through this. I'm sure if you don't suffer from chronic fatigue, it's probably difficult to understand what it's like and the only thing I can compare it to is the low energy you feel from having the flu or pneumonia. I don't have the fever but everything else including body aches which is the second most common side effect, lucky me!

On a positive note, I don't have any Hodgkins symptoms whatsoever. The nodes that were growing under my arm have shrunk to normal size as far as the doc can tell and my blood counts are at the bottom end of normal (including platelets thank God!).

I know I probably won't ever feel "normal" again for the rest of my life, I've resigned myself to that. I'm proud how I've been able to overcome so many deficits and still manage to get out once in a while to enjoy my life. I recently went to a 25 year reunion at the first high school I went to before we moved as a kid and I saw people I hadn't seen in over 25 years! Just recently went to a Red Wings game and have been trying to stay busy when I do have some energy still working on my places and driving for Uber.com one or two days a week. It's been interesting bussing people around to go spend time at the bars when I used to be that person. Makes me realize that I'm getting older as when I drop them off, I have absolutely zero desire to run in those circles anymore. I had a couple of riders invite me to join them and their friends and I just wasn't feeling it, I'm so glad that stage of my life is over...

Well, I just wanted to document the fatigue thing and hope the next time I write, I'll have a better grip on that and hopefully be making some strides to find some energy. It's Christmas week and looking forward to spending time with my family and a special someone in my life. She's been a blessing and I feel lucky to have someone in my life who understands what I deal with and loves me for who I am. I couldn't have asked for a better gift this Christmas!

If you celebrate Christmas, have a merry one! If not, happy holidays!!

Chris

Thursday, December 11, 2014

Haters

I feel compelled to follow up on my last post because the more I think about it, the more it compels me to write about this sick, deranged, and ignorant person.  Of course right after I copied and pasted the second of two hateful comments I received and called out this person, the comments stopped.  Like I said, I know EXACTLY who the person is who left that comment and will spare putting his name on the Internet for all to see including his employer because I actually feel sorry for this guy.  Jesus said you're supposed to turn the other cheek and that's what I'm doing here despite this guy telling me he can't wait until I die!  I know that his wife died from Hodgkins and that might be another reason I'm giving him a pass here as he must be a wreck still over it.

Maybe if some of what he said had any merit I might be more inclined to bury that comment and forget about it but I feel like I need to write this post for nothing else than if I dont, he or his hate wins.  I write this blog as an outlet for not only myself (my fears, aspirations, experiences, etc) but for others who are going through what I'm going through.  I write this to show that you can live with a "death sentence" with some luck, determination and most importantly, love. 

I'm really not supposed to be here.  When I relapsed, being diagnosed with "primary refractory" disease, the odds of me living more than 5 years was less than 20%.  This was before I did a tandem stem cell transplant that did nothing but introduce enough chemotherapy and radiation to my body to kill an elephant.  Once I relapsed from that less than 3 months later, I thought I was a goner for sure.  At the time, there really wasn't anything promising in the pipeline for refractory Hodgkins in terms of treatment and I was so beat up from almost 2 years straight of Tx that I went to a pretty dark place, a place that I wouldn't wish my worst enemy (like the hater that left me a death wish) to go. 

Somehow, through the Grace of God I managed to make it to this point.  It certainly hasn't been easy...  I've dealt with losing my ability to walk for a while, not being able to use my hands, extraordinary pain both chronic and breakthrough (still deal with chronic back pain but nothing like before) and chronic fatigue that I still deal with today.  Because of these issues and the fact that I never know when the Hodgkins is going to get agressive (like it was getting on the tail end of my last clinical trial of Everolimus) and like it was once I was forced to stop that Tx, I've never been able to re-enter the workforce (unless you count driving for Uber haha).  Not to mention, I have absolutely zero faith in the insurance industry to provide me with coverage even though the new law is supposed to protect people like me.  I know Medicare isn't the greatest but at least I know I have insurance.  The SSD and LTD (from my precious employer) basically amounts to living at the poverty level so I have no idea what that jack ass is talking about when he says that I'm "begging" and living on handouts or whatever he said...

Even with that said, who is this guy to give me crap for living my life?!  What business of it is his anyway?  I live a very modest life and do the absolute best with what I have.  I still have messages from this jerk chiding me for taking selfies at "expensive sporting events" or trips!  Am I supposed to go hide under a rock when the odds say I'm not supposed to be alive?!  Am I not allowed to suck every bit of nectar out of life after people like his wife and so many of my friends have died from this disease?  It doesn't make any sense and to him or anyone else who questions my lifestyle all I have to say is try walking in my shoes for a day, see how you like it.  Not fun waking up every morning knowing i have cancer living inside of me and barely being able to get out of bed more often than not from chronic neuropathy and back pain. 

It makes me sick to know there's people out there like this guy.  Hell, I know there's a lot of people out there that think like this guy and some of them are my own flesh and blood like my father.  Funny, the first message this lunatic left me, he enclosed the hateful message by signing "your dad".  Now that I know it wasn't my father it just shows how sick this supposed human being is.  I think the whole thing with my dad is just narcissism or ignorance but this guy actually thinks I should have died instead of his wife.  This is after I tried to help him and her during a tragic time of my life.  I guess you could say I'm still a little pissed, who wouldn't be?!

So, to anyone who is "jealous" or doesn't approve of the way I live, all I can say is let's trade and see how you would like living with what I live with.  To those of you that have supported me over the years and continue to understand and support me, thank you from the bottom of my heart.

I will never let hate deter me from enjoying each day that I'm blessed with relative good health, ever...

Happy Holidays to anybody that still reads this and falls into the supporter category!

Cheers!

Chris