Sunday, July 3, 2011

My Top 10

Why Cancer is Cramping My Style!

The Lack of Sleep
Sleeping is a bit different than it was pre-cancer. My PICC line just straight up grosses me out, so no laying on my left side. My implant is on my right side, and yep, you guessed it, it grosses me out too. And let's not forget about the potential for Lymphedema.

A little lesson on Lymphedema...
It's a condition that occurs when fluid builds up in an area of your body where lymph nodes have been removed. When the fluid, in my case, in my right arm, has no where to go because there are fewer lymph nodes to 'filter', it swells. Because of this risk, I can never have my blood drawn from, have an injection into, or have my blood pressure taken from my right arm ever again. While I attempt to sleep, all I can think about is, "don't fall asleep on that side, you'll cut off circulation and you'll get Lymphedema." Irrational? Yes! True Katie style? Absolutely!

Lying on my stomach is out of the question because when you don't feel good, usually your stomach is a last resort (please note that 6 months ago, I was a stomach sleeper and I miss those days terribly) and the implant doesn't allow for much stomach laying either. So I'm left with laying on my back. Needless to say, I miss sleeping.

Looking Sick
I've heard my mom use the term 'ill' to describe me having cancer and 'ill' is always more serious than 'sick.' She's right though, I am 'ill'. However, just because I'm sick doesn't mean I want to look sick. Being bald is the dead give-away. I guess it's also probably quite clear that I have breast cancer when I accost young women asking when their last breast exam was.

The Chance of Infertility
What do I say about infertility? I cried more about the potential of not having a baby than having cancer. I just can't be infertile after all of this is said and done. Actually, I had Keith give his boys a pep talk before my last chemo at the same time as I was having a chat with my ovaries, just in case. I wanted his troops to have a heads up of what they were dealing with, to prepare them for the potential long road ahead when the time comes to start trying. Keith and I collectively had a chat with the IV bag of cyclophosphamide prior to being hooked up to it. We explained that we are on the same cancer-killing side and pleaded with it to focus on the cancer cells and spare the ovaries. Again, here's hoping it worked. On a positive note, a friend of mine told me about a friend of hers who was in a similar situation as me and she is now pregnant with her first child (they are appropriately naming her 'Hope').

Being the Reason for Others' Tears

There are few things worse than being the reason that someone else is crying. I have been the source of pain for so many close to me. I don't hold any guilt about it, because there's nothing I can do and I had no choice in the matter but it still feels awful. It's a very strange feeling when someone says, teary eyed and all, "I'll pray for you." It's weird to be in a situation at 26, well, at any age, where someone feels they need to ask God to help you. I appreciate it very much, even if it did take some getting used to and if I do say so myself, I think He is doing a great job.

Having Uneven Boobs
For the time being, righty is unnaturally perky while lefty is more 'mid-teens' perky. The surgeon has to over inflate the expander (with saline injections), which is behind the muscle wall, to stretch it. That way, once the implant is in, the breast will drop a little and have a more natural look to it. Right now though, I carry a level in my back pocket and ask Keith for a quick alignment check every now and again. A regular grocery store visit doesn't really phase me but I try to level the ladies out for a wedding or a nice outing. Who am I kidding, we don't go to nice outings; I'm as uneven as a the leaning tower of Pisa, all the time.

Pulling Out My PICC Line
My skin is very sensitive and the bandage they use to cover the PICC line irritates my skin. I try to have the big bandage off before the nurse gets here because when they remove it, it's like taking a bandage off a piece of paper; my skin just rips. Last Friday, I did everything the way I had been doing it and before I knew it, the PICC line was exposed 20 cm instead of 7cm. I was so upset because it could have been prevented and it was my own fault. I get my new one in an hour before my next chemo (this Friday).

The Cost of Meds
Without Keith's benefits and something called the Victory Program (a program that pays for a portion of an injection that I need after each treatment), my meds post-chemo would cost $3000 per treatment - so total of almost $18000. Isn't that criminal? Out of pocket, I end up paying about $30. What would I do if I didn't have benefits?

*Side Note - Parking has also cost over $400 (benefits do not cover parking, ha, unfortunately).

I had my second treatment and it was a doozy. I had nausea, vomiting, no sleep, lots of crying, lots of crying, and, uh, lots of crying. I was so anxious and I couldn't tell you about what. My anxiety and restlessness was taking over, I couldn't lay down, I couldn't stand up, I was hot, I was cold, it didn't matter, whatever I was supposed to be doing, I couldn't do it. I found out on the Wednesday after that one of my anti-nausea pills that I was taking every 4 hours, has been known to cause anxiety - BINGO! So, I stopped taking those meds and moved onto an IV drip at home (thank you PICC line) and have felt better since. I was on the drip for 48 hours until I pulled the PICC out (unintentionally). The meds in the drip also cause anxiety and restlessness but nothing compared to the shit I was going through earlier in the week.

Continual Hair Loss
I thought shaving my head was the right thing to do, and I'm still not convinced that it wasn't. But your hair doesn't just let go and fall out one day, you kind of have to pull it and I have very little to pull. I was told not to shave it with a razor because it irritate the follicles and it will grow back in patches. So, it's just falling out all willy-nilly and my pillow (and 3 daily shirts) are covered in hair. Imagine taking a brush with real hair bristles, holding it above your head, and cutting the bristles so they fall down your shirt. Do that 19 times a day and you'll know what I mean.

OSAP Payments
Apparently, I make too much money on E.I. hahahahahahahahahahahahahahahahahahahahahahahahahahahahahaha. Ok, I'm done.
Anyway, because Keith works full-time (and although he wasn't part of my life when I accrued my massive OSAP tab nor is he paying any of it back) we make too much combined and so I have to pay over $450 a month to OSAP. They knocked off about $100 a month because I'm not currently working. Wasn't that thoughful? I certainly never expected to have breast cancer at the same time as paying back my OSAP.

Well, that completes my Top 10 but in no way is this intended to be a complete list and to be honest, I could make a list of my top 1000 reasons that cancer is cramping my style but I thought I would limit it to 10. I could have added my fear of needles to my top 10 because it has been the cause of many tears and lots of anxiety. The number of needles I have needed since March is at 14 because my PICC line has saved me from an additional 7 (3 IVs, 3 blood tests, and a bone scan) so the inconvenience and pain from the PICC line is worth it.
I plan on making another list in about 6 months to see how my focus has changed. Hopefully, infertility and OSAP payments are off the list in the next 3 and 10 years, respectively, and chemo will be off the list in 68 days, but who's counting? I'm sure there are other issues that would make others' Top 10 lists, so please feel free to add them in the comment section below.

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