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

Saturday, November 15, 2014

Cha Cha Cha changes...

Well, after a brief bout of self doubt, I think I'm ready to bust out of my shell.  Amazingly, it took an unbelievably horrible week down in Florida to make me realize that I control my own destiny.  I am in charge of how I feel, not the cancer anymore, not the people I spend time with or aspire to spend time with.  I have everything I need and it took a moment of self doubt and a big slap in the face to make me realize that.  I realize there are going to always be good and bad days.  The key is to maximize the good and minimize the bad.  One thing I know for sure, as long as I'm feeling relatively well, that's all that matters.  Everything else is gravy.

What I've realized after I wrote the post where I mentioned how I wasn't sure how to handle this newfound feeling ok is I don't have to handle anything, it's already been handled!  Again, nothing else matters, no amount of money, material possessions, good luck (as if I can control my luck!) can trump feeling relatively well.  I realize I'll always have issues with my back, feet and energy but I'm so used to it I'm no longer fazed by it.  The only thing that's more important than what I just mentioned are the people who have stood by me and continue to support me.  The support feels awesome and makes me feel not so alone having this messed up disease in my body.  The support validates how hard I've fought over the last seven years.  The support mitigates the people who've shit on me over the last seven years because they didn't care to empathize with what I deal with.  I've realized this isn't my problem but their problem.  I don't wish anything bad to any of these people, I just don't need them in my life...

It feels so good to finally be in control again.  I guess I had forgotten what that feels like after my relapse and rough last few months on my prior treatment.  So glad that's in the rear view mirror.  I'm back to my edict of living in the moment and enjoying that moment to the fullest.  It's time for me to join a gym again, get my body strong again.  I haven't been able to even think about working out for so long because of my back and total body soreness.  Not to mention, my complete lack of energy.  I want to plan a trip somewhere interesting, somewhere beautiful, I can't wait!

This life of mine is so crazy.  Just this last week alone would blow your mind if I wrote about it.  I don't feel the need to vent so I'll just squash it and know for sure that this next week is going to be great, even as I fly north through the freezing air to the soon to be frozen tundra of Michigan.  I have to make the best of having to be there every other week for my infusions, I have no other choice.  So, working out and keeping my blood flowing is my new priority (again now that I'm able) to help mitigate the lack of sun and warmth that my brain and body craves.  I'll still be going down to Florida but I have to pick my spots especially with spirit airlines the only affordable carrier (they are the absolute worst company in the world!). 

Well, I just landed and ready for a nap after no sleep last night and an interesting experience this morning with said mentioned airline (they gave away my seat this morning!).

I'm so excited to get on with my life finally.

Let's hope this lasts for a while!

Chris :)

Monday, November 10, 2014

How to Live...

I haven't done any research and probably need to speak to a therapist but as weird as it sounds, I'm having difficulty switching gears from thinking "this could be it" to thinking this drug is working and now trying to figure out how to live..

It takes so much out of you mentally going through this rollercoaster process of one week feeling like I'm dying (I had lymph nodes popping up all over the place, my back felt like is was going to snap, I could feel my lung scraping against a tumor, etc). Dealing with all of that is quite the test mentally, it is the ultimate test actually. You try your best to act "normal" on the exterior all the while inside I'm quietly freaking out. You can't always share it because after a while, people will tune you out or I'm afraid of bringing people down. It's a feeling not too many people can relate to and have to say, it's pretty lonely. Thank God I don't feel that way anymore...

What that feeling has been replaced with is a feeling of apprehension, a different kind of anxiety I guess than feeling like you're dying. It's almost feeling like you're in limbo, not knowing what to expect. I've gotten good at just taking each day as it comes and trying to enjoy the moment but now it's like, "what do I do now?" How long can I expect to feel relatively well? Do I dare make long term plans? What do I focus on? I guess you could say I'm a little lost at the moment...

I had been focusing on my sister, trying to get her a vehicle to get her out of the nursing home once in a while, going down to
Florida to pick up a little dog for my mom, getting started with Uber,finally gaining a part time job that suits my rollercoaster energy levels. These were all tangible goals that I know would help give me more of a sense of worth. Mission accomplished there... Now however, I'm not quite sure what to focus on and how to move forward. I'm so grateful that the Nivolumab seems to be working. I don't know, maybe I'm just having a bad day. I seem to do better lately when I'm around people. When I'm alone, I have zero ambition to do anything. I have to pick really small things and work my way up to bigger tasks. This actually has been going on for a while. Not sure if I have ADHD or ADD but I think it's time for me to go find out and do something about it. I feel so much pressure to enjoy this new gift of feeling relatively well, maybe I'm putting too much pressure on myself, can't seem to figure it out.

If there are any survivors reading this, I would love some feedback or input on how you handle "success" with a clinical trial if you have refractory cancer. I know I'm not alone feeling like this. I hope I was able to explain it well enough. I have so many things going through my head, I think I just need to simplify my life and maybe go back to basics, whatever basics are anymore, I don't know!

Writing this, I've convinced myself that I definitely need to speak to someone. My old therapist retired from Karmanos and it's been a while. I heard there was someone good at the Gilda's club over here in Royal Oak MI so that's going to be my first call.

Usually when I write one of these posts, I feel better. I wish I could say the same with this one but I'm afraid I'm going to need some help. Just to document this for reading later, I think that maybe the time of year may have something to do with the way I'm feeling. It's always strange when it starts to get dark sooner, the weather starts getting cold. Maybe there's some underlying anxiety back from when I was a kid knowing the sun and warm weather is going away for a while. I should continue my studies in Psychology, I find it really interesting why we feel the way we do about, anything! I've gone through so much trauma over the last 7 years I think it'd be strange if I didn't have issues quite frankly. I think you'd have to be a robot to not have difficulties coping after going through what I and my fellow refractory cancer survivors go through.

This reminds me of my Mom. She wasn't feeling all that great lately, complaining of body aches and bone aches. We find out tomorrow what the CT scan results are. Praying that she's ok and the aches are just from moving.

Hoping to follow this post up with some positive developments in my overall well being, not just my physical health. It's great to feel well but to truly enjoy it, I've got to figure out how to "embrace" it. I know that doesn't make sense on paper but I will hopefully be able to better explain when I talk to someone.

Until then, remembering to breathe, live in the moment and be truly thankful for everything I have!

Cheers,

Chris

Thursday, November 6, 2014

Round 3 Nivolumab, so far so good!

Well, I had my third infusion on Monday and I continue to feel relatively well happy to say!  This is by far the easiest drug I've been on since I started this crazy journey.  Looking back at the other trials I was on and the side effects I dealt with, makes me really appreciate this "break".  I have 5 times the amount of energy than I used to have and my back is only nagging now instead of debilitating.  Feel so blessed!  Whoever invented this drug, I wish I could shake his or her (or both) hands or better yet, give them a big bear hug! 

I don't want to get overly excited though as I know how fast things can change...  My plan is just to continue to enjoy life surrounded by people who care and understand.   I also have to prepare to take on a Michigan winter a little more this year as I have to be here every other week for infusions which typically take about 5 hours from start to finish.  A small price to pay for life and I'll gladly do it if I can continue to feel like this.  I've even started a part time job driving for Uber.com to help pay for my inevitable higher airfare expense down to Florida which isn't a big deal as its kinda fun!  I've already met some interesting people and it's pretty easy money...  I keep getting texts from them to go to east Lansing this weekend for the big game (MSU vs OSU).  Haven't decided if I'm going to do it yet but they're guaranteeing minimum $30 an hour which isn't too shabby for easy part time work...

I also want to start up an old hobby that I used to love, aquariums.  I used to have some killer tanks years ago both freshwater and salt water.  I'm gonna do cichlids here in Michigan and natural tank in Florida (gonna go snorkeling to collect my own fish/creatures/rock).  Can't wait to get that going, just need a couple of tanks now!

Anyway, thanks again  for keeping up with me to whomever still reads this.  Hopefully someone who has been diagnosed with refractory or incurable cancer stumbles across this and is given hope that you still can have a relatively decent life living with cancer.  It's not always rosy but with perseverance and a little luck, it is possible.  The key is to try and enjoy it (feeling relatively well) while it lasts.

God Bless,

Chris

Sunday, November 2, 2014

Blowing off some steam

Well, I started this blog to document my experiences trying to survive cancer.  I don't think there's a whole lot I haven't talked about on here except for my personal life for obvious reasons.

There's so much that goes into living with this disease, knowing that being refractory, I will always have to wonder (no matter how hard I try not to) when it's going to decide to get agressive again.  As I mentioned before, it's a full time job trying to keep it out of my mind while managing the pain and deficits it's left me with which I won't fully go into as that is not my intent for this post.

One thing I never ever thought I would have to worry about is unconditional support from certain people like close friends and family.  While most of my close friends and family have been there for me through thick and thin, one person who I never thought would turn their back on me has done just that, my own father.  It's not just recently but pretty much the entire time I've been going through this.  I remember when I first was diagnosed and started chemo him and his wife (who is just as bad and even worse) went on vacation for a month in Mexico and never bothered to make a single phone call to see how I was doing or even an email.  His excuse was it was too expensive to call (as if they couldn't afford a $5.00 phone call).  Little did I know that would only be the beginning of a series of insensitive remarks like "can't you ever joke around" or "boy,  you've really changed since you got cancer"...  It's always seemed to be about him.  I talked to a therapist and she told me people like that suffer from narcissistic personality disorder (not being able to understand what a person is going through and taking things personally if say I'm grumpy or not in a jovial mood).

There were many more shocking incidents but none as bad as what happened as he was driving me down for a chemotherapy infusion 4-5 years ago.  I wasn't feeling all that great and said something that obviously hit a nerve with him and the next thing I know he was pulling over on the freeway, just north of the Mack exit on I75, in the dead of winter Dec 31st, in a not so great part of Detroit. He told me to get out of the car!  Needless to say, I was in shock and pretty pissed.  That's the first time in my life I ever put up my fists and felt like cracking him one.  I'm happy to say I refrained from that, demanded he drive me to the hospital so I could get my treatment and when he dropped me off, used what little strength I had in my legs (I had guillaine barre syndrome at the time) to kick his car and slam the door, I was livid and in shock, not sure who wouldn't be after something like that.  He then went on to change the story saying he pulled over because I raised my fists, almost as shocking as the incident itself, throwing me under the bus for his despicable act...

This was almost 5 years ago.  If you've kept up with my blog, you'd know that I've dealt with so so much since then and never once did I receive a direct apology for what he did nor did I ever once receive a message, call, text or even a message passed along to ask how I was doing, not once.  I don't know if there are any father's or mothers reading this but could you imagine your son or daughter going through what I've gone through and not ever bothering to see how they were doing?  I don't get it and have been holding this in the entire time hoping that maybe he'd get it and be the bigger person and more importantly, a father.

I probably wouldn't be writing this still if it weren't for the way that he treats my mother.  It was obviously bad when they were married (I'll spare going into the details of that because it's not my intention to delve into that period as bad as it was).  However, when you continue to bully my mother, the woman who has taken care of my sister her entire life, the woman who nurtured her after she survived brain cancer, then chronic epilepsy, then her stroke and subsequent paralysis....  All the while barely if ever offering any kind of help financially (he left that to my now deceased step father). He put his hatred for my mother in front of ever checking on Nicole as my mom was the only conduit to finding out what really was going on with Nicole besides me before we became estranged.

Even with all that said, with him speaking to my mother like she is a piece of crap I still probably wouldn't be writing this blog if it weren't for this straw that broke the camels back if you will.  Just recently after having to defend my mother once again after he went off on her because he demanded that Nicole's music therapy teacher sign a calendar proving she was there because he pays a measly $100 a month splitting the cost of the music therapist, a woman who is probably the best thing that's happened to Nicole since she's been in her now permanent disabled state, a woman who stays longer than she's supposed to, buys things for Nicole out of her own pocket...  He demands she signs a calendar to prove she was there, pretty petty if you ask me, as if my mom is going to steal from my sister, forget the fact that she's paid for 90% of Nicole's essentials, I could go on and on about his utter neglect now and previously...  What he told me though when I defended my mom for the umpteenth time would be the reason for me revealing all of this.

He had the audacity of blaming me for what happened to Nicole.  Told me it was my fault because I "talked her into the surgery".  Even writing this, I'm still shocked.  If it was true, I probably wouldn't be writing this obviously as I would've wrote about this long ago (feeling guilty that I was the reason nicole is now paralyzed and unable to speak).  If he had tried to develop any kind of relationship with my mom, he would've known that nicole had debilitating epilepsy where she was having grand mal seizures multiple times per week and sometimes daily.  I introduced her to a neurologist who happens to be the wife of my oncologist and that is the extent of my involvement in her deciding to have the surgery.  I wasn't even there when they decided to go forward with it but found out after the fact the doctor gave her an 85% chance at success so naturally we were all excited.  The entire reason nicole is in the state she's in now is because they found active cancer cells in the scar tissue that they were removing, deadly agressive cancer cells that needed to be removed and in doing so, the doctor "scraped" too much and caused her blood vessels to rupture and thus causing the stroke. 

Imagine seeing something like that happen to your brother or sister, I can't think of anything more tragic and every time I think about her, it makes me want to ball my eyes out, indescribable pain and someone is going to tell me it was my fault?  This is supposed to be my father?  Forget about his utter apathy as to what I deal with and have been dealing with for 7 years (which he told me recently that he's heard nobody believes?!)  I'm sorry, when you mess with the two people that I care about more than anything in this world, I'm gonna call you out on that.  I gave him a chance to take it back and apologize and it never happened.  I have no choice but to release this stuff that I've been holding in for a long time now as it's been eating me up...

I know in my heart (as well as people who know the truth) that I never once tried to talk Nicole into anything.  I think his crazy wife is putting some crazy ideas in his head, I have no idea but that is pretty messed up if you ask me.  I don't care about the way he treats me or lack of any outward concern but if you're going to accuse me of almost killing my sister, I'm going to stand up for myself, that's about as low as you can get.

I'm sorry for this negative post at a time when I'm finally getting some relief from this new medicine from my cancer symptoms but couldn't let this fester in my head any longer. 

I look forward to updating when I have my first post Nivolumab scan and hopefully reporting some good news!  As far as my father is concerned, maybe after (or if) he reads this, maybe he'll realize that you don't treat people like that, let alone your own kids and the woman who's been taking care of your kids while you've been sitting on the sidelines the entire time.  I'm embarrassed and ashamed but haven't given up hope that one day he'll get it.

Until then, it's back to enjoying life in the moment and being thankful to all the people who care about me and have stuck with me during my darkest days.  You know who you are and I truly appreciate you all.

Sincerely,

Chris

Wednesday, October 15, 2014

New Hope Nivolumab

Well, I started my new clinical trial last week, an immuno-therapy drug called Nivolumab.  It doesn't actually treat the cancer, it treats my immune system.  I don't understand the exact science but the drug basically turns on killer cells in my body that were previously for some reason ignoring the cancer.  I've read more than once that it's the future of cancer treatment in many other types like melanoma, lung, certain breast cancers and others that I can't recall at the moment.  The best part is that there are very few if any side effects.  It almost seems to good to be true but the FDA was impressed enough with the potential to grant the drug "breakthrough status" which only happens if a phase 1 has really impressive results.

So, after a little rough start (my disease became inflamed and caused quite a bit of pain in my back and pretty much my whole body), I am now hopeful after hitting my low yesterday thinking I was regressing after feeling like crap all day, barely able to get out of bed.  Today I felt like a completely different person, at least in the early part of the day.  I've been dealing with a pleural rub where I can feel something (tumor) rubbing on my lower rt lung when I breathe.  Not a very pleasant feeling I can tell you.  Hoping this continues to improve as my energy level was much better today and it seemed like my back felt better too.

Going to try and get out tomorrow to celebrate, my first time out in a while.  Going to see Pearl Jam at Joe Louis arena so that should be fun.

Here's to having a beer without having horrible back pain.  Haven't had a beer in almost a month, just too painful, not worth it.  I happen to express a rare disease symptom in Hodgkins where I have pain in my tumor sites when I have only a few sips of alcohol.  It's a burning inside out pain that to me feels like either being shot or stabbed (-even thought neither has happened to me, I can only imagine, I bet this is close though, sometimes difficult to breathe). 

Ok, cheers to Bristol Myers for inventing this promising new drug!  I hope to God it works for me...

Chris

Wednesday, August 27, 2014

Need to vent...

Well, it's been a while since I've posted and as I sit here in my room, my back aching as it's been all day, I thought I would take this opportunity to let off some steam on my blog. I try my best to remain positive and when I started this endeavor of chronicling my experience with cancer, I went out of my way to find positives when they were pretty difficult to find... While I still do maintain a positive attitude most of the time, sometimes it's necessary to unload negative feelings, even if I'm only typing words on a computer. It's been therapeutic in the past and hopefully will be this time around as well.

As I'm pretty sure I mentioned in my last post, the Hodgkins has come back. I've been trying really hard to continue to live my life as normally as possible but lately, it's been getting tough. My back has been raging out lately in constant pain from my "target areas" around my t-9 through t-11 vertebrae. I don't know if it's from the Hodgkins growing (I can feel something in there), or my recent predicaments having to deal with a flood that brought almost 4 feet of sewer water into my basement destroying everything down there including my furnace, hot water heater and washer and dryer. I was in New York when it happened and I came back from that stressful experience (I drove there, not the most pleasant thing driving around Manhattan lost and trying to find parking, doctor's offices, etc) to a major disaster. It's not just the fact that I've lost around $15,000 (low side) of uninsured stuff but the fact that I've been living in a toxic bacteria infested home that is still partially infested and I don't have any hot water. My immune system is weak, I can't believe I haven't gotten sick, thank God. I was fortunate that my next door neighbors helped me remove a lot of the stuff that was down there to the front of the house for garbage pickup but I've done and continue to do everything on my own and hence possibly the source of my back issues (most likely a combination of that and the cancer growing).

It's always been a struggle taking care of myself since I was diagnosed back in Nov 2007 but this has really thrown me for a loop. How do I get through this with my back raging out and my energy level super low? I really feel for older people who live on their own and don't have a ton of people to rely on to help them out. It seems as I've gone through this journey, fewer and fewer people understand that the cancer is still around, still wreaking havoc on my body and peace of mind. I think that's kind of normal I suppose, maybe it's difficult for people to understand who haven't gone through it or know someone who lives with cancer. It can be pretty lonely sometimes to be honest. It's funny, I've been told that I've really changed... Well, I guess I have changed, I've become more hardened I think. It's hard not to become hardened when you're getting pounded with something almost every day of your life. The more you pound something, the harder it gets...

It's crazy that some people you think would understand and give you some rope have absolutely zero empathy for what a person in my situation goes through both physically and mentally. I've really learned a lot about people that have been in my life or were in my life at one point but for one reason or another, can't seem to understand or handle what I'm going through. Despite everything that has just happened to me, I haven't heard a single word from my father and not even acknowledged as a human being by his wife. I haven't been blessed with a child but pretty damn sure if I was, I wouldn't just be standing on the sidelines knowing that child is struggling. I don't get it...

With friends, I have to say that I've learned who really cares and who could care less. I used to have a large circle of friends when I was younger and as I've aged and then encountered this disease, I've seen that circle get smaller and smaller. I think it's natural for that to happen as you get older but when you get sick, people just don't want to deal with it it seems. I just went on a trip to Columbia with some friends I've known for a while. Unfortunately for me, one of these "friends" turned out to be one of the people that could care less about the issues I deal with and treated me like I was a major burden. Not the best of scenarios being in a foreign country dependent on your buddies to have your back but you live, hopefully learn and move on without that person in your life going forward.

I guess this whole experience has made me a little cynical about life which kinda sucks because I was never like that in my younger days. When you struggle, it seems to make you more aware of how many people are struggling out there. I guess it's kinda the same when you're not struggling. When things are going great, it's not pleasant to think about things that are really wrong in this world although I know there are a great many that do. I wish I could get my carefree attitude back but I'm afraid those days are long gone... I do however do my best to live a carefree life which definitely helps mitigate the negative feelings that creep in once in a while. It also helps to have people in my life that I can trust. People who I can share my feelings with, both good and bad.

These past few months have been some of the toughest times I've dealt with in the past 3 years (personally, witnessing my sister's stroke, stepfathers death and my moms cancer coming back all at once while also losing my confidante was definitely much worse). I was spoiled being on a clinical trial that actually worked! I have to remember that despite my struggles with energy, I never really thought about cancer and that unto itself is a huge weight not to have on your mind everyday. Today, right now, it's there (the thought of cancer) and mixed in with everything else, it's quite a load I have to say.

I'm really looking forward to getting started on this next trial, hopefully here in Detroit and not New York. I love New York and could start right away on PD-1 but the expense of going there every other week not to mention the stress of the city being a patient rather than just a visitor to me is worth waiting and dealing with the anxiety of knowing the cancer is festering inside me unchecked and this crazy back and body pain that's going on right now.

Here's to keeping my sanity over the next few weeks...

To those out there that truly care, thanks for reading and hopefully understanding.

Chris

Thursday, June 19, 2014

On my own...

Tonight I go to sleep without taking the two pills per night I've been taking for the last three years that have basically kept me alive. It hasn't hit me yet or maybe I'm just battle weary but I'm moving forward in my life with cancer growing in my body and there's nothing I can do to stop it for the next 30 days or more. Kinda unnerving as I write this just thinking about it but I think it's really going to hit me when I wake up tomorrow morning with the pain I've been waking up with over the last 3 or so weeks. I call it the tin man effect. It's like my body is locked up and every move I make is painful until I'm able to take the meds to help me move like the tin man used oil to help him move. Now that I've stopped the RAD001, the drug I've been taking to keep the Hodgkins away the last 3 years, I wonder if the Hodgkins is going to grow even faster now that there's nothing to slow it down. I wonder if the pain is going to get significantly worse in a short period of time...

This is just one of the many things that are crowding my mind right now. So I wake up tomorrow to face the day with uncertainty and a healthy amount of fear while I do everything in my power to drink in the gift of life and be thankful to be alive.

On the other hand, perhaps the benefits of not having to take this drug anymore will counterbalance the potential "exposure" issues and back pain with hopefully having more energy and finally getting my appetite back! Throughout my time taking this drug, my energy level has been 3 to 4 out of 10. In other words, I was pretty much exhausted every waking hour, I just learned how to mask it I guess. Can't wait to crave good food again! I can count on my one hand how many times I cooked a proper dinner for myself over the last year. It was either scavenging or getting a carryout. I had no desire to deal with food, going out to buy it let alone preparing it. The main culprit for this was the Everolimus or RAD001, yet it kept me alive...

I'm thankful for the 3 years despite these two major side effects. I think anyone who has dealt with cancer would trade being tired and having no appetite for being cancer free.

Part of me is excited to see if I can do better with the next trial. I can't get greedy and expect things to go perfectly and get great results with this next trial...

I guess it's ok to dream though right?

With that said, I'm out...

Wednesday, June 18, 2014

I'm back...

And,not coincidentally, the cancer has returned as well. I told myself I need to start writing again as it's a great de-stresser and an easy way to possibly help people who are going through the same thing (compare experiences). I have a lot on my mind so please stay tuned for more to come. To those of you who have followed me since 2008 when I started this, sorry I've been m.i.a. I focused for a while writing about my sister and her stroke then just took time away to enjoy life...

Not the ideal conditions to restart this blog but not a whole lot I can do about it!

Thanks for the support and thanks again for reading. Probably have a good lengthy post within the next couple of days. I have quite a bit on my mind....

Chris