Tuesday, March 27, 2012

Phrases that Drive Cancer Patients Insane

...and the responses that roll through our minds as you say them, that we would like to say but really it would be mean if we did.

**Disclaimer I wrote this during a phase where I was very frustrated with the world and having cancer and a relapse within a month of being done with chemo** 

1) "I could never do what you are doing" AHHHHHHHH, yes actually you could, when you aren't given a choice of whether or not you want cancer you do what I am doing. You fight, you accept it, you deal with it and you move on.

2) "I love the hair, I could never cut mine that short" Again, actually yes you could, when you aren't given a choice you deal with whatever hair you have you deal with it and whether you can and cannot "pull it off" you always hold the cancer card and people don't care or you wear a hat and again people don't care.

3) "You're an inspiration" or "You are so brave for going through this" Thanks, but really I wish it weren't for going through chemo and handling it well publicly. I'd rather be an inspiration for teaching or sharing God, not for being a good cancer patient.

4) "I know how you feel" Ummmm not quite, until you've puked continually for 5 hours after someone stabbed you in the chest with a needle and then had a machine pump toxins into your body all while trying to fight the puking so you didn't make all 7 other patients around you puke and try not to get it on your clothes, just to go home have the most gut wrenching feelings across your entire body that make you just want to curl into a small ball in a dark room and not move for days all while not being able to drink normal fluids without them tasting funny for days that only made nausea worse. Or until you've lived a life where productivity is a walk around the neighborhood, a lap around Target or a trip to the grocery store. Or until you don't have a life that you control instead your days are decided by different doctors appointments and there is no telling when they may just put you in the hospital so plans aren't quite feasible to make in advance because who knows the cancer can come back quick and whatever you want to do will not happen because you will have a stem cell transplant. Or until you lose a part of your body so that way you can live. Really you don't know how I feel.

5) "Well, it will all be over soon" Actually no it won't, I'm not planning on dying so it won't be over but for the rest of my life I will have scans, I will have some fear either in the back of mind or in the front that it may be back. I will never be able to feel a lymph node on my neck or any where else on my body and be able to sleep. I will always have to live with this so it won't be over soon unless my life is because I have the scars both physically, mentally and emotionally.

6) "You are handling it all so well" It's because I have to, there are no choices here not handling it well would turn me into a hardcore hermit. You have the fight or flight mentality but the thing is you can't run away or not deal with this, so the only option is fight. Also just because I handle it well publicly doesn't mean it doesn't hurt, that I don't cry or ache or want to scream and have a total breakdown Steel Magnolias style.

7) "I'm so sorry to hear that" Yea me too, it wasn't quite the graduation present I was wanting. I would have been just as happy with an iPad.

8) "We're praying for you" Thank you (that's actually a sincere remark)

9) "Wow you used the bathroom quick and you're already standing up!" This was from a nurse at Emory after my VATS procedure. I'm 23 and yes even though I have a chest tube in at the moment I can drop trowel, pee into a bucket, wipe and get my shorts back on alone and stand up all within 2 minutes. I just can't walk and move this giant chest tube machine along with my IV pole.

**These two are from friends of mine**

10) From my friend who had testicular cancer "Hey bro, did you get to keep your ball after they removed it?" Honestly that one floors me and makes me cringe.

11) "Why are you injecting all sorts of toxins into your body? You should be using holistic medicine." Ohhhh I must have missed when you went to medical school. Really?! You're trying to advise me on what medicines I should be using to kill my cancer?! You work in RETAIL(really I don't know where these people worked but the person that tried told me about holistic medicine did) I have faith in my doctors and internet research that the route I am taking to abolish cancer in my body is going to get the job done better than drinking a lot of water and nothing else ever would, since I was drinking a lot of water when I was diagnosed in the first place.

What are the things that people have told you as a cancer patient that drive you insane?

Tuesday, March 6, 2012

You're now bald, what to do?

I guess during this topic of head coverings I'm about to reveal the many looks of myself. I'm not particularly self centered but I feel in many ways this post needs a lot of picture examples and I would rather use my own photos than borrow from other spots. This blog is by a cancer fighter for cancer fighters or anyone who is trying to learn more about cancer patients and issues they face from a personal experience. I am in no way a taught expert I just write about what cancer has taught me and the options and routes that I have taken to get to the point I am now.

Last week I wrote about hair loss and I consider hair loss a three part subject because you first have the hair loss, then you have the many options of what to do with the bald head and third you have the new growth and how/when will the hair grow back. If I put that all in one blog post it would be huge so I chose to keep them as their own blogs.

So now that your head looks very similar to these two pictures you may be very self conscious and that is understandable, also depending on where you live you need to have something on your head especially when outside to protect your freshly bare scalp from the sun. Everyone is different in their favorite approach and head coverings that they use I'm just going to give an overview of the ones I preferred and really used.

I found my favorite option of a head covering is just a baseball cap. When I shop and live in general I went au natural I got some looks and questions but overall people were very kind. I generally wore a ball cap in and out of stores to protect my head from the sun. I am an avid football fan and enjoy a good tailgate so a ball cap was always perfect and it looked feminine and very much me.

I also learned that once you lose your hair that your head and ears get very cold at times so my favorite colder weather feather are knitted caps. I would be lying if I said I don't own probably 10. These are in my opinion blessings from above especially since many of mine came donated from churches in the area from a grab bag at my treatment center. They also are very reasonably priced and I think are a great fashion feature for guys or gals.Plus even once your hair starts growing back they can be worn with no issues.
Before I realized that I would prefer ball caps or knitted caps I bought some scarfs from the cancer shop at a near by hospital shop. There were a wide variety that I bought over time from the easy to use turban scarf that helps you put it on easily to the normal everyday scarf that I bought from Target and taught myself to tie after attending a class intended on helping ladies with cancer feel better and learn a little bit and get advice from other ladies.
My tie technique used on a Target scarf

The scarf that I bought from the hospital wellness center
Wigs are fun, they make you look more natural and in many ways can make you feel more like you, also you can have fun trying different colors and styles for yourself and not have to worry about it. First bit of advice about wigs is they are expensive so before you buy call your insurance and find out if wigs or "hair prosthesis" are covered under your insurance. You will probably be as surprised as I was to find many times they are, my insurance covered my wigs prices 90% so I paid the full price of the wig but insurance sent me a check back covering all but $13, which is much better than it could have. Second with your wig make sure you really love the cut and it makes you feel like you and looks similar to your natural look especially the roots if your hair didn't have body at the scalp go with a more flat wig. I felt especially uncomfortable in my first wig that a lot of volume up top, plus the color was a little off to me. Third play with hair colors in the shop but get something that looks natural on you and that you like and I(and my mother) think there is high importance on the highlights in the color because they make the wigs look more natural than just a solid color.
The first wig

The second
Again with wig #2

Resources that helped me
TLC Catalog from American Cancer Society This is a good resource for inexpensive options and many head covering varieties
Look Good Feel Better I never attended a meeting but I have friends who did who would recommend it
Chemoflage If you're in Atlanta I would highly recommend this

Closing thought: Not everyone is the same, cover your head to make sure you feel beautiful or handsome and don't let anyone steal your sunshine. Everyone may have their input on what they think you might like/want but YOU have the final say. Also never feel ashamed of your bald head, it is beautiful and never let someone cover it in a way you do not want it is your decision not their's because they are not fighting you are.