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!



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 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,


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.