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

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

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

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!

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

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 :)

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