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

8 comments:

Unknown said...

I don't know what to say.I just fervently hope that this new trial really really works for you.You are an incredibly brave man and I hope you never lose hope and keep fighting.These are just platitudes I know, but sometimes just a word of comfort does really help.I am in a different country altogether but if you need to vent our or need someone to talk to feel free to write to me.Best of luck.

Neil said...

Hey Chris
Thinking of you and always sending you only the best thoughts possible!! Glad to read a post of yours its been a while... all the best!!! Neil

Anonymous said...

Hear Hear Chris. I have been fighting Hodgkins for seven years now and have been following your blog for five of those. I just made one year on the PD-1 trial. The response was amazing. I basically had a CR after the first infusion! Here's to you having the same result. I too have seen so called friends and family members turn a blind eye to my plight. It really is astonishing and sad. However, i feel that this experience that you and i go through makes us Bodhisattvas. It is up to us to show people by example how to live by compassion and resilience. Anyway, the best to you Chris and continued luck!

Donna said...

Chris. Sorry you are going through so much . I think anyone who has had cancer has gone through what your feeling. I too definitely found out who my REAL friends are! I have a few very close friends and family who have always stood by me and truly cared. And there are those who don't really give a crap!! I have removed those from my life. Although we never met I have kept up on your blog and in some strange way have come to know you and care about you and your family. You have been through so many struggles and ups and downs!! I know from reading your blog you have always continued to live your life to the fullest through everything!! You are truly an inspiration!!
I am saying prayers and sending positive thoughts that you get started on the new trial and have great results!! Vent anytime!! Really hoping things turn around for you....you deserve a break. Hope something gives you some relief from the back pain.
Thinking of you and your family and I know better days are ahead for all of you!!!
Donna

Loraine Ritchey said...

Chris you are in my thoughts and hopes - I so wish I could take away the pain, the cruelty and the obscenity of Hodgkins from this world. You gave me hope for my Chris when he was diagnosed. The hope for my Chris was lost so quickly but you , such an amazing young man, keep fighting and taking what life throws at you and inspire those of us who are down in the dregs of life's cup. Writing does help I know that maybe for just a little bit, but know that there are those of us who care and think of you - I just wish thee was something I could do........

Anonymous said...

I've followed your blog for a long time. I'm glad that you decided to vent. Don't keep all that inside of you! I'm sorry that some of your family and friends have treated you poorly. You deserve better. You have been through an incredible amount of tragedy. Way too much for one person to have to endure! Wishing you all the best with the upcoming clinical trial.

nigebirch said...

Chris,
What more, huh? Geez, Chris, not fair.
I'll make this short. I've written on your blog before. You even mentioned me in one of your posts (thank you). I'm 2-1/2 years in remission following chemo and radiation for Hodgkins. It's now YOUR turn to get where I am, and perhaps PD-1 is the vehicle that will bring you here. Whoops, I said I'd make this short, sorry. :)
I'd like to help you somehow, someway, whether it's a listening ear, a shoulder, a hug, a ride, taking you to visit Nicole, whatever. I'm not far from you, Chris (near Toledo).
If the spirit moves you, please email me at dmbirchmd@aol.com so I can give you my phone number. I can be a great listener, Chris. That old saying, "When one door closes, another one opens" maybe that applies to friendships, too. ;)
Sincerely,
Dorrin Birch

Unknown said...

Hey Chris, just wanted to say I think it's totally understandable for you to feel a little hardened and it would probably be strange if you didn't. While there is a lot to be said for trying to stay positive I think it's also important to be able to acknowledge how things really are, and sometimes how they are is shitty! It's a balance I guess. I do think you've been through so much. It's hard to remain positive when you're in physical pain or discomfort too. As to those who haven't been supportive, I think you've every right to feel hurt and every right to choose to focus your energy on those who are supportive instead. Interesting to see that some people cannot (or choose not to) engage with anything difficult in life!

My thoughts are with you (from the UK), I do hope the new treatment goes well and that you get some improvement in your symptoms. Take care of yourself and take any offers of help you can, to give yourself a break!! x