Myths and Misconceptions of Having Cancer

It's amazing to me how many people get cancer. It's everywhere. And there are lots of stories about people getting cancer. But what I have realized over the last five months is that most people know very little about what cancer is, how it is treated, or how to respond to it. Any why should they? But there are lots of myths and misconceptions that are perpetuated by the media's treatment of cancer...and especially breast cancer. If you want the basics on what causes cancer, this is really nice little cartoon that explains it: http://www.thepharmafist.com/cancer/

But here is my take on some of the misconceptions based on my experiences:

• There is a "right thing" to say to someone with cancer.
• I personally like, "Wow. That sucks." Those words pretty much sum it up. I have also noticed that people who say, "I have no idea what I should say," end up coming up with some of the most heartfelt, moving, empathetic things to say in the end. There is no right thing to say. There are a few really bad things to say that you should try to steer clear of. But just say it with love. Even if it doesn't come out right, the intention will be there. That's what counts.
• There is a reason I got cancer.
• There are many things that can increase your risk of cancer, but it is almost impossible to pinpoint the actual reason I ended up with a 5 cm tumor in my breast. I do not have the BRCA1 or BRCA 2 gene mutation. I do not have breast cancer in my family. I am not obese. I did take birth control. I do drink alcohol. I don't have kids. Many people have these same risk factors and do not get cancer. I do not know why I got cancer. I just did. 
• I do not like being told that everything happens for a reason. Please do not tell me this. I am fully aware that I can pull positive things out of the experience and use it to make myself a stronger person, blah, blah, blah. But I'm also pretty sure I could have reaped those benefits in other ways, too. Perhaps a really hard year at my job might have done it? Maybe a back injury? Oh, wait. I did that. I did not need cancer to help me grow as a person. This did not happen for a reason. It just happened. 
• Going through chemotherapy means that you always feel awful.
• This is a hard one. I usually don't feel great, but I don't always feel bad. I feel like everyone expects me to feel awful all the time. I don't. Granted, I swing between feeling fine and feeling crappy pretty quickly and sometimes several times a day, but sometimes I feel just fine. Sometimes I just feel really tired in the evenings. It often depends on the day of the week and what treatment I am currently undergoing. Right now, for instance, my fingernails are taking the brunt of the treatment. They're brown and bruised. I can't do simple things like pulling up my jeans or opening a can of soda. After I walk on the treadmill, they throb. But other than that, I feel ok. With treatments on Thursdays, I sometimes feel tired. Fridays are my best day due to the steroids I'm getting. Sundays the steroids wear off so I usually feel pretty achy and rundown. Mondays I get the hellish neupogen shots so I feel like I'm coming down with the flu and I get full body aches. Tuesdays I get better except for random waves of achiness. Wednesdays are pretty good. I do feel, though, like people don't want me to say the that I feel ok. On Fridays I've started trying to run again, and people look at me like I'm crazy. "Oh...I wouldn't think you'd be able to do that!" Yes. I can. Last Friday I ran 3 miles at my marathon pace and it felt so good and empowering that I wanted to cry. And then I passed out in my bed by 8:30pm, and woke up with a nose bleed. It all evens out. When I was on my A/C chemo, I did feel awful for a whole week at a time. And then I felt pretty good for a week. Different treatments do different things.
• Finishing chemo means you're done with cancer.
• As I near the end of my chemo treatments, I'm starting to get this one a lot. And it's different for every cancer patient depending on their type, stage, treatment, etc. For me, finishing chemo is a good thing in some ways. My hair will start growing back. Thank the lords! I'll stop feeling general crappy. However, it does mean that I am now moving into the stage of treatment where they are going to cut off body parts. This, in some ways, is harder than chemo because it makes it really real. My body will now show the signs of treatment every day for the rest of my life. Also, chemo is just the first stage of my treatment. Many people do it last, but for me the intent of the chemo was to shrink my tumor, which it did. I now have to go through mastectomy surgery, radiation, and then reconstruction, and the process will not be over until sometime late in 2017. Yup, another whole year of dealing with this. Oh yeah, then there is the 10 years of Tamoxifen pills that I will take to block my estrogen production to try to keep my estrogen positive cancer from coming back. So yes, I'm glad that the chemo is finishing up, but by no means am I almost done.
• Chemotherapy is the hardest part of cancer.
• I am only part way through my cancer treatment, but I'm pretty confident that this is not true. In my opinion, the hardest part of having cancer is the fact that I think about it ALL THE TIME. Every thought process involves or is interrupted by the thought that I have cancer. It's there when I'm working, exercising, and going out with friends. It is very isolating. I guess there are support groups, but I haven't gone to any of them. There are no young people support groups that are convenient for me to get to. I remember reading when I was training for my marathon that even though all I thought about was training for my marathon, no one wanted to hear about my marathon training all the time. The same is true with cancer. I think about it all the time, but I can't talk about it all the time. It is my new normal. It is a distraction when I'm trying to work or talk or think. If life is a dogwalk, cancer is my squirrel. For me, that is the hardest part of having cancer.
• Once you're done with treatments, everything will go back to normal.
• Between the mental trauma, the constant fear that the cancer will come back, the long lasting side effects of chemo, surgery, and radiation, the scars, the numbness and lack of feeling in a newly dissected breast and/or armpit, and the constant reminder that you went through this, I seriously doubt that anyone that goes through this ever feels normal again. They may get used to it. Or they may find a new normal. But things will never just go back to the way they were.
• This brings up another thing that people say to me that make me wonder. Sometimes they say "Oh! You have breast cancer? My grandmother/mother/sister/friend DIED of breast cancer!" Do not say this. Ever. Just don't. I don't need to hear it.
• I have also heard, "My grandmother/mother/sister/friend had breast cancer and now she's doing great!" While this may in fact be true, this does not really help me. It just makes me feel like there is something kinda wrong with me because I do not feel like I will be fine again ever. And while this other person may be fine on the outside and putting on a good show, she is probably not fine all the time on the inside. The mental side of cancer, the body image side of cancer, the personal relationship side of cancer are the sides that I don't think cancer survivors talk about.  There is a lot of pressure to "handle this well"....to "be positive"....to put on a good show. Underneath may be a whole other ball of wax. 
• I do/don't want to talk about it.
• It depends. At the beginning, I couldn't talk about it without crying so I did not want to talk about it. Now, I'm having to make lots of decisions and learn lots of new medical knowledge, so it's nice to get it off my chest. Cancer also makes me feel very isolated, so it can be really nice to share so I don't feel so alone. It depends on the day, too. Just ask....but only if you really want to hear the answer.
• If I want help, I'll ask for it.  
• Nope. Won't happen. I do not like putting other people out and do not like asking them to do things or go out of their way for me. Lots of people say, "Just let me know if there's anything I can do for you." Nope. Again, probably won't happen. I'll do it myself. Unless you make the decision, give me concrete options, or force your help on me. Then I will concede because it actually might be convenient, entertaining, or take my mind off things. But I will not decide for you how you can help me. I'm making way too many other decisions right now...and just trying to make it through the day. In fact, at this point, I feel like I never want to make another decision ever again for the rest of my life. I will accept your help and your company, but I will not ask for it. That's just how I am. It does mean a lot that you offer. Believe me. I have been overwhelmed by the amount of help I have had offered to me. But unless it's something really important, don't expect me to take you up on it. That would require me expending energy....entertaining you or being a hostess or being a gracious gift accepter. I don't have the extra mental energy to do that. I'll probably just lay on the couch and eat tortilla chips by myself and watch long binge sessions of NCIS. 
• Being positive makes everything easier. 
• It is easier to be positive in public. No one wants to ask, "How are you doing?" and hear a long laundry list of ailments. I often have people say, "Wow! You're handling this so well!" To which I often reply, "I don't really have a choice." Right? You either move forward or you stop moving. I'm not really ready to stop moving quite yet. Don't get me wrong. I am generally a positive person. Smiling and being positive actually do make me feel better. But on a daily basis, I am also a sad person, a frustrated person, and an angry person. Sometimes, I'm even a pretty depressed person. It just doesn't do me any good to show people those sides. It just makes them uncomfortable. I am pretty good at reading people, and the last thing I want to do is make them uncomfortable. But it's hard for me to believe that a cancer patient could be positive all the time. It's just really hard. Right now, my life span is being predicted in 5 year increments, I have no hair, and I can't undo my pants without discomfort. However, I have wonderful friends, people love me, and I'm probably not going to die anytime soon, so I find positivity in that. Again, balance is key.
• All cancer is treated the same.
• Again, nope. I've read literally hundreds of accounts of women with breast cancer. I've yet to find a case just like mine. Every case is different. Treatment is different. Reconstruction options are different. Response is different. Personal preferences are different. Choices are different. Mostly because people are different. And there are so many different kinds of cancer out there that when you combine that with the diversity of people, you get lots of different cancer cases. 
• Getting a mastectomy and breast reconstruction is similar to getting a boob job.
• When you get a manicure, do they chop off your fingertips, throw the flesh away, and then stick your new nails onto little blocks of putty that they stick back onto the ends of your fingers? No? Then, no, getting a mastectomy is not like getting a boob job. 
• When you get a mastectomy they are actually cutting a piece of your body off. It is not good. There is no silver lining (except for the getting rid of the cancer part of things). There are amazing ways that they can go about reconstructing the breast, but there are a whole host of things that change during this process. You usually end up with scars, skin grafts, weakness in the area of tissue donation, and lack of sensation in your new breast. If you choose to get implants, they are not placed behind the existing breast tissue as they are in a boob job. They ARE the boob. They look and feel very different. They may rupture. Or, if they don't, they end up looking a little unnatural, especially as you age. If you choose to augment your breast size during the reconstruction process, your chances of complications go up, too.
• You have to ask yourself if you want one or two done. Do you just reconstruct one and live with your breasts looking and aging differently? Or do you have both of them done so they match but you lose feeling in both breasts? Fun decisions.
• If you're like me, you have lymph nodes that have to be removed at the time of mastectomy, too. This may be simple, or, if the cancer has spread, it may involve taking a whole lot of lymph nodes out that affect your lymphatic system in your arm. This can cause lymphedema, or swelling of the arm. Another fun thing to deal with.
• So again, to sum up, getting a mastectomy and breast reconstruction is not like getting a boob job.

So that's what I got. If any of you have said any of the things I mentioned up above, please don't worry. As I mentioned, anything said with love gets a full pardon. i take love in any way, shape, or form. But these are just some of the things that have been going through my head. And maybe they clear up some of the ideas that are floating around out there.

Cocktail anyone? I haven't been having much, but you definitely should. Hoping my taste buds get back to normal soon so I can enjoy a nice riesling again. Have one for me, ok? Cheers!