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

Monday, December 8, 2014

Interesting...

Not sure how to start this one...  Maybe I'll just copy and paste this latest comment by an obvious "fan" lol

Hah ha :-) you parasitic piece of shit! Have you done anything productive with your life ever? Have you ever had a real job and worked to support yourself? Always begging or cheating, you hypocrite piece of shit... very few creatures on this earth deserves cancer and you sure are one of them. Soon this world will rid off you and your alikes... keep thinking positive... so are the real hard working, honest, tax paying citizens of this great country :-) :-) how does it feel to know that there are people out there looking forward to hear the only good news that can come out of your miserable life? Does that ever make your selfish miserable existence ask yourself why?

That is the entire comment verbatim.  Where that crap and hate are coming from I have no idea.  I wish this person  would have some courage and identify themselves as this is the second such message I've gotten in the last two days.  While it doesn't bother me personally because I know none of it is true, it bothers me that there are psychopaths out there that think like this.  I work all my life making an honest living, save every penny then through no fault of my own, get not only my livelihood taken from me but my peace of mind for the rest of my life.  I write this blog to vent what are very real frustrations and very real pain that this asshole obviously has never had to feel.  Reading this comment really makes me appreciate all of the overwhelmingly positive responses I've received since starting this blog.  I know I've put myself out there and I've had some weird comments before but nothing hateful like this one.  Now that I write this, I think I've figured out who the anonymous person is...  Please know, that I know and you should be very careful when you wish death upon a person or people, just saying...  One thing about surviving refractory cancer for 7 years now, stupid hateful people don't scare me.  To this person, please know I will be in touch with law enforcement as I know exactly who you are.  Sad thing is I tried to help this person when I was going through the most tragic time of my life, unbelievable.  I don't know if every person in the "tea party" thinks like this guy but that is exactly where this whole thing is coming from.  A conversation on Facebook about Obamacare!  I remember it all and when I put together all of the pieces, I know who you are sir.  I tried to help his wife who also had refractory Hodgkins right after my sister had her stroke,  my mom's cancer came back and Rich died (amongst other things w me personally).  I stopped everything to try and help this person and accepted a friend request on Facebook.  I think something happened with his wife and he's taking out his anger on me or something, idk... 

So, without calling out your name sir, I think you should take your hate somewhere else. I don't have any room for it in my life.  You really need some help and I hope you get it. 

That was definitely and interesting post!

All in the life of a cancer survivor lol!

Sunday, December 7, 2014

Positive vibes

Getting ready to crash, feeling blessed and wanted to share.  I'm so grateful the Nivolumab seems to be working.  I'm so encouraged by what's happening in terms of research of immuno-therapy treatments.  Happy and proud to be a part of this and inspired by positive and negative comments I get so thanks to those who take the time to comment, makes me stronger!

Chris