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.