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,


Tuesday, October 4, 2016


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!