Cancer is a fucking Thief

Cancer sucks. For real, guys. It’s funny that almost a year after my diagnosis, still, the most apt thing anyone has said since learning I got diagnosed has been “Man…that sucks.” I mean, what else do you say, really? Apologizing is kind of silly – it’s nobody’s fault.

There are a million reasons why cancer sucks, and I think I’ve illustrated a bunch in previous posts. See; blood in bowel movements, nausea, losing hair, shaking body parts, nausea, risk of dying, being isolated, nausea, needing chemo, restricted diets, losing touch with friends, nausea, losing weight, inability to work out, nausea, oh, and did I mention constant, persistent nausea? Never mind the fact that my regular headaches become migraines thanks to half the medications I’m on having the side effect of “causes headaches”.

One good thing to come from this whole experience, though, is that I went to a neurologist, who confirmed that they are, in fact, migraines (if not cluster head aches, but the medication is the same for either). This means even after I’m done with my cancer meds, I’ll still be able to get Imitrex prescriptions. And let me tell you, if I ever met the guy or gal that invented imitrex, I would give them the BIGGEST hug. Just. The biggest.

But the funny thing about cancer is just what it steals from you that you never really thought of. I mean, there’s the obvious shit.

Cancer has stolen from me just about 120 days spent entirely in a hospital bed, on top of stealing (to date) about 10 months of my life. It has robbed my mom, father, sister and brother in law of a valuable co-worker, making them sacrifice their time and effort to cover my position at work, as well as having to figure out how to get me to my (many) doctor’s appointments, all while STILL having to cover for my absence.

It’s stolen my previous fitness, hard earned over a year spent in the gym, on the road, and in the pool, 3 to 6 times a week. It has robbed me of holidays spent with my *awesome* family. It robbed me of a girlfriend, though to be honest, I’m kind of thankful for that one. The transplant has robbed me of my entire winter snowboarding season, a birthday, a christmas, a new years, and multiple friend’s birthdays.

Now, I don’t want this to seem like I’m depressed or sad or bitter. Cancer has also given me some absolutely amazing gifts. I’ve rekindled friendships long thought lost to time and distance. I’ve gotten closer to my cousins, aunts, and uncles than I think I’ve ever been in my adult life. I’ve been reached out to by individuals, organizations, and strangers, all telling me what an inspiration I am (which is still weird). Cancer has reaffirmed my philosophy on life; we all get one shot at being happy. Life is too damn short to waste it doing things you hate in the hopes that one day you’ll do something you love. My mom and I have had lots of conversations to that effect. As a breast cancer survivor, my mom certainly has an insight into what I’m going through, especially because she had breast cancer a while ago, back when the treatments weren’t nearly so advanced or well understood. And those conversations usually ended with me saying something along the lines of “We’re all going to get some kind of cancer in our life times – people are just living too long now, and basically everything we eat, breath, or are present around causes cancer of some form or another”. Little did I know.

But the biggest thing I feel like cancer has stolen from me is my voice. Not like, I can’t speak because my throat hurt. Although for a while there, after the transplant, speaking was pretty much the last thing on my mind. No, what I mean is, I don’t seem to know how to talk to people anymore. Now, I’ve never been the smoothest guy around, but I’ve always had the gift of being able to relate to and get along with almost anyone. Now, though, I feel like I’m an awkward teenager all over again. Part of it is because my life has been on actual hold since Halloween, and before Halloween, it was on partial hold. At least before the transplant I was still able to bike outside, visit with friends, and hang out with people. Having to go into forced hibernation has cut me from the flow of my friends lives, and its really difficult to try to get back to normal.

Part of the problem, I think, is that nobody wants to complain to me anymore. I’m used to being the guy that people ask for advice, complain to, or just a good shoulder to cry on. Now, though, it’s as if I have the ultimate trump card for excuses, so nobody wants to complain about anything to me. Which is just silly. A friend of mine they other day was complaining that he was feeling like shit, and while I sympathized with him, I couldn’t help but think “HURRAY NORMALCY”.

On top of which, meeting or talking to new people is an awkward position for both of us. I don’t want to just talk about my cancer, but at the same time, that’s basically the only thing that’s been going on in my life for the last 10 months, so unless you play video games, there’s not much else I can bring up. Plus, being 28, I can’t really explain my living situation without bringing up cancer, because lets face it – I, under no circumstances, want to be living at home at this stage in my life. No offense to my parents, who have been ridiculously awesome hosts, and they have a ridiculously awesome house, and I’m basically staying in a 5 star hotel rent-free. But I’m 28, I’m single, and man, does it chafe to not be alone again. In your life plans, you always assume that you move forward. You live at home when you’re young because you’re lucky to be born with parents that care and can afford you. You go to school, you go to college, and you finish. Maybe you live at home for a while so you can get your feet under you, and then you move out. The next step is supposed to be moving in with a significant other, and starting a life or family with them. It’s not supposed to be moving back to your parents house. No matter how cool their house may be.

On top of that, there’s no way to drop “I had leukemia” on a conversation without it being a complete and utter bombshell that kills basically all topics before and after. Either I seem totally flippant about it, or if I’m serious about it, I feel like I’m oversharing. It’s just funny to me that something I’m so open about in the online world causes so many issues when I try to talk (or not talk) about it with people in the “real world”, as it were. I’ve been trying to write a post like this for a while, but that’s the other bitch about cancer. It steals your motivation, your thoughts, and your ability to connect with the emotions necessary to write honestly. Couple that with blinding migraines, and you have a recipe for avoiding the hell out of writing about feelings.

Compounding the issues is that I want to be open and honest about my experiences with cancer. I hope that someone out there learns something from my suffering, or finds comfort in my humor, or anything else. And I have no problem talking about my disease when people ask. But, in case you couldn’t already tell, I have a tendency to speak (at length) about subjects that I’m knowledgeable in. The last year has basically been a crash course in learning about blood cancers, so much so that I’ve heard “you should just go to med school when you’re done with this” more than once.  But when you meet new people, it’s tough to gauge just how much they actually want to hear about your cancer.

Do they really want to hear about all the GI issues you’ve had to deal with for the last 5 months? (probably not)

Do they really want to know how few minorities are in the national bone marrow donor registry? (maybe)

Do they want to know what it’s like to projectile leak from all orifices? (That’s the politest way to say that..but probably not)

When someone asks me about my experiences, I’m pretty much never at a loss for words. But, I’ve completely lost the ability to tell how much they want to know. I feel like the world’s biggest overshare-er.

That’s why I’m thankful that I have such awesome friends. Sunday was the second day I was able to drive myself to a friend’s house, and play crazy awesome board games all day. While they asked for updates, and we talked about my cancer a little, it was more them showing that they cared how I was doing. But at the end of the day, we were all there to play games, and we had a blast.

I’m thankful for all my video game buddies, as they’ve listened to me bitch and moan about the crap I’ve had to tolerate, and they haven’t even complained when I played terribly because I got a migraine in the middle of a game, or that my tremor got worse randomly, or my bowels suddenly decided that they needed a bathroom break RIGHT NOW.

I’m thankful for all my gchat buddies, who keep me entertained throughout the day (Brit, Gabriella, Walter in particular – you guys send me links, articles, and chat with me, keeping the boredom away).

And I’m obviously thankful for my ridiculously awesome nuclear family, fantastic cousins on both sides, amazing aunts and uncles all over the place, friends of friends, strangers, for just being exactly what I needed when I needed it.

As for the future, the next big milestone is 6 Months Post Transplant. At that point, they do an immune function test. My next appointment is on 5/1, but technically, my anniversary is 5/7. I’m hoping they do the immune function test on 5/1, and not on the next visit, which would be 5/22. Anyway, the test will determine which of 3 possible results I can get:

Super-duper-awesome (but least likely): My immune function test comes back great, they heavily reduce my meds, I’m able to move back to my apartment, go back to work, eat restaurant food (although probably take out, not actually staying in a crowded restaurant yet), and maybe even go to the gym.

Pretty gosh darn swell (I’d say like a 40-50% chance): My immune function test comes back within a normal range for 6 months post transplant. They’re able to slightly reduce some of my immune suppression drugs, and I’m able to go back to work, and move back into my apartment. Restricted diet, restricted crowds, and restricted gym still in effect.

Blegh (30%? chance): My tests come back crappy. Either very slight medication reductions, or none at all, and things stay as they are for a bit longer. Not sure how long, or when they would re-test me. While this would be a super bummer, at least the worst case scenario doesn’t really worsen anything.

Additional good news is that none of these cases include worsening of my prognosis. So no matter what the test shows, my bone marrow is still doing great.

Advertisements

14 comments

  1. Elizabeth Breslin · · Reply

    I wish that
    I could give you a great big magic wand that would grant you three (or maybe more) wishes. oooh! what would you wish for…..?

    1. I mean, aside from wishing that I could go back to June 1st, and have the rest results be negative, and not have had to deal with all this crap? Haha.

      The main thing I’d wish for would be control over time, so that I could fast forward to the point where I’m no longer pent up on house arrest.

      The second thing would be for no relapses.

      The last thing I’d wish for would be to have my previous physical fitness levels back, without having to go back to the gym and start from scratch all over again.

      If I had any extras, it’d be that for all those people diagnosed with blood cancers that need transplants, that they all find acceptable matches in time to save them.

  2. I relate to so many things in this post so I’m sorry in advance if this reply becomes a novel (If it does, I’ll give you publishing rights haha). Especially the ‘house arrest’ and ‘losing’ your voice – for me these have been some of, if not the most, difficult portions to cope with. I can deal with pain, nausea, fear, even the head games cancer tries to play, but not being able to do simple things (like hike in the sunshine, mountain bike, or feel the grass between my toes, etc.) is something I was not prepared for. Like so many others, before I was diagnosed I was completely ignorant of blood cancers and how different the very lengthy and strict treatment is compared to the majority of other cancers (that is not to say other cancers are less serious, just very different).

    Being immunosuppressed blows (at one point my ANC was .03 I didn’t even think that was humanly possible, clearly I was wrong) and trying to explain what immunosuppression means to other people gets old pretty quickly, and I’m sure the hour and a half diatribe I gave them in explanation got old after the first 15 minutes. So, while my friends and family have been amazing, it has definitely been a challenge for them to comprehend the rigidity we must adhere to. I mean, even showering is a ridiculously long and tedious process – how could it not be with a third arm, in the form of a catheter, inserted in your chest. Or there are always the really fun bodily changes and ‘happenings’ you mentioned … how do you explain in detail to people that there’s actually a legit medically prescribed concotion called “Boston Butt Cream” and that’s the least of the problems you have.

    I guess the ‘politically’ correct answer to all of the above, and more, would be ‘you don’t’, but sometimes you need the world to know that leukemia is an insidious cancer that attempts to infiltrate every single aspect of your life! You want people to really get that it isn’t ‘just’ getting through chemo and remaining positive … it is the aftermath too – the need for transplant (in our cases), the muscles that have wasted away even though you’ve been active and fit your entire life, the days where you are pissed off, devastated and determined all at the same time, the feeling you need to restrict your responses according to the other persons wants and needs, the fact that when you look around at the people on the blood cancer floor also being treated you realize that you are the youngest patient by at least 3 decades, etc. etc. (as you know, the list goes on and on) …

    One things for sure though, no matter how much cancer sucks or how much it has taken away, in all of your posts I’ve had the privilege to read I hear your voice loud and clear and I have to say it’s refreshing to hear such frank honesty and in my book, that is pretty awesome! Now if only we were allowed to toast to that with a beer and some hot wings 🙂

    1. ** “One thing’s for sure … ” clearly leukemia also takes away grammatical skills.

      1. Beer, hot wings, knowledge of leukemia, AND an obsession with correcting grammar and spelling mistakes on the internet? Be still my beating heart.

        More seriously, I can see that you can relate to what I’m talking about. After the transplant, I spent a few weeks with my ANC literally at 0.0. As in, nothing, nada, zilch, zip. And the median age for diagnosis for AML is 62. I’m 28, and was diagnosed at 27.

        I think the biggest thing for friends and family to get, that they don’t really seem to, is that there isn’t really like a big “yay! the tumor is gone!” celebration day for blood cancer. It’s like…”yay! I survived the procedure! I’m not dead! Now we wait and see!”.

        Anyway, thanks for the kind words. Always nice to be appreciated when you try hard, haha.

  3. Margaret Mateyaschuk · · Reply

    Hi there – for someone without a voice I can hear you loud and clear!
    Godson I do believe everything happens for a reason – I’ll be dam if I can
    figure out the reason for cancer – it Sucks! But no one is counting you out – look at what you’ve been through. I think it’s amazing how you’ve explained your journey. When your old and gray your look back and say -how the hell did I get through that? And you’ll still say Cancer sucks but you’ll have forgotten some of the awful stuff you’ve gone through and you’ll have a new appreciation of life, family and living.
    Your anniversary will be a day the family will celebrate and I’m throwing water on you to Christen you again! Keep smiling the sun is around the corner. Love you – one of your awesome Aunts

  4. annmarie · · Reply

    You are my hero. Every time I laugh at our silly program I think of you. Wish I could express myself the way you do. Just know that you are always in my thoughts. Looking forward to you celebration. P.S Any new shows ? love you

    1. Thanks! And I’m actually planning on putting up a post talking about all the books and shows I’ve watched since getting diagnosed, haha.

  5. Hey man, I totally get what you mean about the feeling of not knowing how to talk to people any more. I feel like that a lot – very socially awkward, like I have nothing to say, or don’t know how to have a conversation.
    You don’t want people to ask how you are, because it’s difficult to talk about, and it makes people react… weird. Either sympathy (which is sweet, but tough to take, too), or awkwardly, or not – so smart things some people say…
    Then you want people to ask how you are, because it shows they care.. a lot of people are too scared to know! Or they don’t understand, and their eyes glaze over the second you say the word ‘lymphocyte’.
    Then, certain trivial things don’t seem to matter as much. It’s more difficult to make mindless small talk, if there’s a lot of big shit going on in your life. But, mindless small talk is a relief, too.. it’s just hard to find the right balance, with people who get it. It sounds like you’re managing, but it is an up – and – down thing.
    I really connected to this post… you explained a lot of things that I never really found the words for. I know our situations are very different, but some things still stay the same. All shit still stinks 😛
    Congratulations, again, on everything. Watching you from when your blog first started, your journey really is incredible. I don’t have to tell you to keep it up; it’s who you are, I know you will. 🙂
    Take care 🙂 hopin’ you get some more freedom soon! (immune-wise)

    1. Thanks. I know that I’m not the first person to go through these struggles, nor will I be the last, but there’s a difference between intellectually knowing that, and getting to see it for real.

      I swear, when I get freedom, I’m going to just eat ALL the things.

  6. lol I’m looking forward to that FOR you!!! haha pig out if your tummy can handle it, too.. mmm foodie celebration!

  7. I know it’s been two years since you posted. I hope that’s because you found your voice and nothing else ever went wrong again. I’m sure that’s not exactly how things went. My husband is 30 and was diagnosed with leukemia in the fall 2013. He finishes chemo this month, so I’m not sure why I’m still out there looking for cancer blogs on the Internet, hoping to find people who understand the experience and to read their thoughts, but I am, and your thoughts made a difference to me (even as a caregiver rather than a patient), so I wanted to let you know that.

    1. Well thanks. I haven’t written in a while because first, the stem cell transplant was the worst thing I ever experienced in my life. The recovery, physically and memyally, was incredibly tough.

      Since recovering, it’s been really hard to find my voice to continue writing. It’s hard because some of my friends that I made through this blog have relapsed, and writing about my positive outcome feels shitty. I don’t know. I’ve started to write a few times but I just end up deleting it. Maybe one day I’ll continue my writing, but until then, the least I could do is keep this blog online.

      I’m glad it helped you.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: