Today Deb and I spent a couple hours at IKEA. I told myself that I would just buy a few things for the baby but they had all this cute stuff....We then ate at a favorite Thai place in Canton. A nice time. Later Karen and I will go to WSU for the Italian film series. I am looking forward to it.
But while digging through others' blogs, I came across the following from a lymphoma patient about having 'the good kind of cancer'. Interesting and so I am pasting it here as some of it is what I have felt but of course, I am not as far into cancerworld as I will be. No gun is being put to your head here.
In February of this year I was diagnosed with advanced Hodgkins Lymphoma. I went through eight months of chemotherapy, everything looks really good, and now I am just waiting my post-chemo scans to indicate remission. I am finally done with chemo. Woop woop. This is very good news for me. I’m real happy about it and I am excited to get on with my life.I was a good cancer patient…no, a great cancer patient. I was tough. I didn’t curl up in a ball and hide, I faced it, I sucked it up, and got through it. I’m not looking for a medal, I just want to preface what I am going to say with the fact that I am not whiney or self-pitying, and that I realize that I am not the only one who’s had to deal with this crap, and that there’s worse things that could have happened to me. I have a wonderful family and caring friends that have formed a very lovely support system for me. I cannot thank them enough for all their help and love.That said, here’s my rant…This goes out to everyone I know – friends, family, co-workers, doctors, nurses, radiologists, technicians, friends of friends, exes, and others…
1. There is no “good” kind of cancer. Yes, this kind of cancer at my stage has an 80-85% survival rate. That’s great, I am happy about that – really, I am, but that doesn’t make it “good” or any “better” than any other kind of cancer. Cancer is a scary thing, the treatment is excruciating, and at the end of the day, if you happen to get “lucky” and be one of the 15-20% that don’t survive, that statistic turns from a “good” one to a not-so-great one. Really. That’s like one out of five. Can you think of five friends? Picture them. If one of them up and died would you consider it a “good” number of them? I didn’t think so. So please, don’t tell me I got the “good” kind of cancer – don’t even suggest it. Don’t even say, “Well, at least you didn’t get _________ cancer, that would really suck.” Uh, hello, this pretty much REALLY sucks. Next time you get cancer I’ll ask you if you think the kind you got is “good”.
2. Don’t tell me things I don’t want to hear. For some reason, it occurred several times that when I told someone what I was going through (which is kinda awkward anyway), they would say something to the effect of “OH, my (mother, sister, aunt, grandmother, insert any other relative or even remote acquaintance here) just died last year of cancer.” Or “Right, my (insert distant relative here) died of Hodgkin’s.” What the hell?? I have been diagnosed with a terrible disease and am undergoing intensive and debilitating treatment, and you’re going to tell me about someone dying? What? Seriously? It’s better just to not chime in here. Again, next time you get cancer, I’ll try this line out on you and you can let me know what you think.
3. DO NOT ask me about my hair. With the kind of chemo I had, my hair started falling out around treatment #3, slowly at first, then lots at a time until I finally, and very sadly, shaved my head. THAT WAS REALLY HARD TO DO. It’s about a lot of things…it’s about vanity and feeling ugly, it’s about the stigma of being sick and that being obvious to the world, it’s about knowing or not who you are without your hair/eyelashes/eyebrows, it’s complicated. And, I take ownership of the fact that some of that is really superficial shit – but it’s very real and it’s emotional. So, comments like “How’s your hair doing?” “Wow, it’s really thinning out!” “So is your hair just coming out in handfuls?” and “Is that a wig?” are not helpful and WILL make me cry. If you think this is stupid or oversensitive, let me say it again: next time you get cancer let me know how this goes.
4. Don’t tell me it’s going to be ok. Bottom line is this – I know I want everything to be ok, and I know you want everything to be ok – you wouldn’t be my friend/involved family member if that weren’t the case. Unfortunately, we BOTH know that it just might not be ok. We BOTH know that there exists the possibility that it’s not going to be ok and that the disease isn’t going to respond, or is going to come back, and that even if I am tough and brave, it could kill me. I have had to deal with that idea since the word “cancer” came out of the doctor’s mouth. In that moment, and in the hours and days to come, I knew that it could happen that everything was not going to be ok. If I didn’t know that, cancer wouldn’t be such a big deal. If that weren’t a possibility, we wouldn’t have shed tears when we heard the news. So, for my sake, don’t say that line. I know it’s the first thing that comes to mind, and I know you mean it well, but try something else that actually means something, like: “Whenever you need anything I’ll be there” or “This is going to be rough but I’m here for you” or “I’m on my way over with a last season’s Top Model” or even just “Give ‘em hell, sista”. I know you may not get it, but next time you get cancer we’ll share profound understanding when I tell you that I know it may not be ok and that I know that’s real scary
5. Don’t comment about my weight. Ok, here’s something that I didn’t know before I started this. Chemotherapy is NOT a weight loss plan – YES, they have indeed discontinued all the fringe benefits from the cancer card membership. Turns out, they give you steroids that make you hungry all the damned time. And, you feel like complete shit and don’t even have enough energy to walk up the stairs, much less to exercise. In the beginning when I was still trying to figure out how to deal with shitty side effects like constant vomiting, painful mouth sores, etc, I lost weight because I just literally couldn’t eat. But once I got that under control, the hunger would come on, and man, I can eat a lot. I was in pretty good shape (at the gym five days a week, healthy foods, etc) when all this started and now I have gained weight and am up a pants size. The once-muscle has turned into mushy fat and I’m not happy about it, but during treatment there was just no fix. So, the “wow, you’ve put a couple on, haven’t you?” or “I thought you lose weight on chemo” comments are not helpful and again, will make me cry. Next time you get cancer, see how you feel when I tell you to “hit the gym.”
6. Chemotherapy sucks. I think everyone knows that – I don’t know what the first thing is that pops into your head when you read that word, but I would venture to guess that it’s not something warm and smiley. It sucks, it really sucks. You vomit, are nauseated (which is so much worse than vomiting) all the time, you get terrible headaches, you can’t sleep, you get sores in your mouth and chronic yeast infections, you get seriously seriously constipated, your brain malfunctions and you can’t remember how to get to the bus stop or where you normally leave the toothpaste, your whole body hurts, your toenails fall off (wtf? Yeah) and now they give you shots to stimulate white blood cell production (at least in my case) that cause relentless, incapacitating pain that made you simply want to give up on living just to make it stop. Ok, I said it, chemotherapy sucks – and I am really good at being tough and not letting everyone know all the shitty stuff that’s happening to me at once, but you know it sucks. So, no, I am not interested in hearing you whine about a cold you think you’re getting, your scratchy throat, your eye/ear/sinus infection, your sleepiness, your headache, etc. I know you really don’t feel good, but c’mon man, suck it up – or at least go tell someone else who doesn’t have cancer. Next time you get it, you’ll drop kick the asshole that spends ten minutes talking about how bad their hangover is.
7. It’s a REALLY long road. Eight months is a long time to be sick. It just is, and I KNOW (I really know) that it gets old. In the beginning everyone called all the time, offered to go to chemo with me, sent lots of e-mails, came over to visit when I was sick….but after the months drag on it’s like people get sick of it. I understand that – ‘cause I got pretty sick of it too. I got sick of calling in to work, not doing anything fun, not seeing anyone….even just answering the damned “How are you feeling?” question….I felt like it was better to lie and say “fine” than to say how I really felt because people kind of don’t know how to react or don’t want to hear it. I have a wonderful husband and mother who took exceptional care of me, even when they needed a break, even when it got old, even when they got sick of hearing me say I felt like shit. They did that because they knew I needed them. I needed other people too, I needed girlfriends to just come over with a movie or a dvd of a funny tv show, or to call me on the days they knew I had treatment, or to just call when they hadn’t heard from me in days. Some did and some didn’t. You know who you are and why you didn’t. Maybe you didn’t feel comfortable or maybe you were too “busy.” Regardless, I love you, and I will do it for you the next time you get cancer.I really, really hope you never get cancer. I mean that for everyone – even if you’re a jerk, even if you write to me and rant meaningless bullshit about my rant, even if you really deserve to have something nasty happen to you – I hope you don’t get cancer. It’s awful. I’m not one of those “I’m a survivor!” types, I’m not one of those in-your-face super tough post-cancer freaks, I’m really normal and I will get over this. That said, if you do get cancer or if your friend or (insert any relative here) gets cancer, you can bet your bottom dollar that if/when I hear about it I’ll be on your/their doorstep with a big teary welcome to the cancer club hug and a mop and bucket to clean the floors, or popcorn and a dvd for the kids, or dinner so you/they don’t have to make it, or whatever it takes, for as long as it takes – and you won’t have to ask for it, and you won’t have to say thanks, because we’ll both just know. It’s a special club and we take care of our own.
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