Wednesday, November 26, 2008

I don't need a new hobby!

I told Zac recently  that I don't need a new hobby!  It seems that all my free time is devoted to cancer now.  All I do is talk to people about cancer, search online for cancer stuff, and today I even went to the library and got some book - guess what subject - YEP cancer! "Sigh"  

I so want to just crawl into bed, pull the covers over my head and make this all go away.  Unfortunately, its not going away so I have to do what I can to become informed and fight this!

I am still at such a loss as to what to ask the drs.  Its like being stuck in a foreign country where you don't speak the language.  
What?  HUH?  Uhhh - No habla cancera!?!?!
What should I be doing right now?  How do I  ensure that the decisions that I make now are the best ones to ensure we don't have to go thru all this again in a few years?  Will I still feel feminine with fake boobs? 

I obviously don't "WANT" to lose my boobs - I am a girl after all.  But at the same time, they are just boobs and don't really serve a function (anymore).  
Right now, I am all for doing a mastectomy, and really would like to do both breasts. Especially if I can get reconstruction done, (again the whole girl thing)  I  don't want to be selfish about this and not make the best medical decisions based on my emotions and body image.   I feel that making the most radical decisions NOW will help ensure we don't have to go down this road again in the future.  

Last week, I had coffee with  my friend Deb.  Last year, she was diagnosed with breast cancer - (her situation is scary similar to mine - same kind same size etc...) she told me that I should demand a Breast MRI be done prior to surgery. She also gave me a bunch of literature.   Its all so overwhelming - but like she said I have to be my own advocate. They wanted to put me on stronger antibiotics when I asked for the biopsy to be done - had I not they wouldn't have found the cancer. 

I talked to my dr on Friday and asked him:
If they were going to do a CT scan, Breast MRI and Bone scan?
-He said that there wasn't a rush to do those until after the surgery and they knew better what they were dealing with.  The results wouldn't change what they did surgery wise only the treatment afterward.  
Deb however, told me that the Breast MRI shows if there is any additional cancer they need to remove and if it is present in the other breast as well.

I also asked him if they were doing both breast why or why not? 
- He said that he didn't think it would be beneficial at this point to do both. Again, they don't know what the heck they are dealing with yet. Most women choose to have both done to reduce the chance of reoccurrence but he said even if you do remove the breast tissue, it could still come back in the chest wall or sternum area.

Another question I asked him was if I could have a port for chemo put in during surgery? (so I don't have to have it done later) 
-He said based on the size of my mass, he didn't think I would have to have chemo - Again, when I told Deb this she totally disagreed. Her cancer is stage two and was just over 2cm - mine is already 2cm and they know that they didn't get all of it - so I don't see how I wouldn't have to have chemo also - not that I want it mind you but what the heck??? I have no clue what to think or do about all this!

So, I read and ask questions- find others who have been thru this and talk to them on the phone for hours.  I spend all my free time searching the web - wow there is a lot of stuff out there.  One of my favorites that adds humor to a not so funny subject is: It opens with a video of the grim reaper going into the cancer ward of a hospital and ends with a cancer patient chasing him out. Dying has never been an option in my mind with all this but something about the video makes me feel empowered.
Another site has a video about a girl named Anne.
~ "Anne is lonely. She lives with her mother, has no friends, and is fighting cancer. Her escape from reality exists in the form of The Aviatrix, an intergalactic superhero alter ego who rockets through space to fight the powers of evil on distant planets". It ends with her riding off in her bathrobe (the official uniform of the U. S. cancer team - standard issue) with the lawn man - Cheezy- true but fun none the less! So, while doing all this research isn't my first choice, its where I am now and what I need to be doing - so - I've got a new hobby! Who knows maybe someday I'l make my own short movie! :)

1 comment:

Vergori Family said...

Wow, Jolene. You're doing a great thing, becoming informed. And think of all the other women you will be able to encourage and inform when the time comes for you to pass on what you've learned.

This is totally random, but I read once that a macrobiotic diet and/or a calorie restrictive diet can slow the growth of cancer cells. Have you read anything like that?

I'm still praying for you. God bless you and your beautiful little family.