Friday, August 6, 2010

Radiation stuff

Now Radiation is done and I'm not able to really do much as far as exercise because of some pain.  My survivor friends had not told me about the pain involved which was the right thing to do.  I mean not everyone has pain and so why hear about it and stress about it.

I was going along nicely until my last week and the burn started to get worse.  I had thought my pain and burn had peaked, but I was mistaken.  I now believe it has peaked and I'm on the road to no pain or at least a lot less.

My last 2 treatments I was given gel pack treatments which felt really good.  They are gel pack that actually stick on your skin.  The pain I felt was burning and then shooting or aching pains mostly where I had drains and stitches.

This is a picture of my last drain....they are not very big so that was a good thing!

With the pain there is the itch!  I kept trying and trying to scratch it and I realized that I was scratching where I have no feeling so the itch was actually inside my body.  These things added together make you a little crazy.  Chemo was hard because it makes you sick, tired and depressed, but radiation is really painful for me anyways.  I did cry a few times because it did hurt pretty bad.  What helps-

Aquaphor, cortisone cream, Tylenol PM, Miaderm, loose fitting shirts- and wife beaters.  You have to keep applying lotions so it's better to have an undershirt of some sort on under your clothes.  During the day if it's hot you may want to use corn starch.  Apply it under you arm and breast where your skin may rub and cause soreness.  Also if you sit in front of a fan it can be really soothing.  I spoke to a couple of my survivor friends and they said they too had pain around incisions and also itching.  They assured me that it will pass and it's all proof that my body is healing.  My sweet friend Betty talked with me about managing pain and the way she counts through pain.  I myself imagine the pain as a wave and I try to imagine the wave (pain) coming in and then going away.  This is all the stuff you learn when you listen to those pain management CD.  My other friend Barb helps me a lot by letting me know it's all normal!'s a glimpse of what a radiation burn can look like.  Mine as you can see has started to peel.  I am most sore under my arm where I had drains 3 TIMES- yuk.  Also under my breast was super sore!          

I read to be nice to your doctors and let them see the real you.  They need to get to know you as a PERSON!  So for radiation I made sure to connect with my radiation techs.  They were all good people.  I would talk with them and get to know them a little and sometimes bring them in a treat.  In radiation you get a time slot and you try and get a time you like, but it's 1st come 1st serve.  As I was going along a slot opened up at 7am which is a popular time slot, but my techs gave me the option.  They knew I was from out of town and they actually started to like me.....I think.  Seeing them everyday you have to like each other or it will be not as pleasant.

Here's another thing- dress nice and wear make-up for your simulation!  I didn't and I regretted it everyday of radiation.  I looked like hell for simulation....and they take a picture of you for identification.  Every day I had to look at it on the screen and want to scream.  They joked about it a lot because it was THAT BAD!
It's amazing how we are judged by our appearance.....I noticed my doctor when he came dashing in my room....he sort of look startled and then smiled big and said "We really need to get a different picture of you....I can barely see your face"......You know he was thinking before he walked in as he was looking over my file with my picture, "What a Hot Mess this woman is".  Oh and then in radiation I was able to carry my file from radiation to my doctor's appointment so one morning I was reading through it and I was a little surprised to see that they made a note of me being a "decent" looking woman and something about my state of mind.  I gathered they were making notes about my "state of mind" and my ability to understand what they were telling me.  I found it pretty interesting.

What I'm trying to say is that when I took care of myself and looked good I felt better and I felt as if I was being seen as Danielle Podrazil not another number.  I'm mean the one appointment my doctor commented on my shoes-see they are paying  Just smiling makes a big difference on how you are cared for.

Oh and take a pain med before simulation because it can be painful for your affected arm.

I have to mention this book I'm loving right now:

Intimacy after Breast Cancer
Gina M. Maisano

It's so hard to go through losing a breast, but then when you realize you will be put into menopause as well it SUCKS double.  I had no idea the grief menopause would cause.  I will not have any more periods and for all the times I cursed having my period I would take 2 periods a month not to do this menopause thing.  BUT I'm not going to be that way I'm going to be grateful for everything I have.  I think back to when I complained about weight, breasts, my period and now look!  I'm the heaviest I've ever been, I'm going through menopause, and my right breast is gone!  How dare I complain like I did.
Any way Intimacy After Breast Cancer is a great book to help you realize- YES you have changed, but who's to say in the end you won't be EVEN BETTER than you were before.
There is a wonderful line in the book that goes like this:   

"The doctors reassure you that your body will heal, but what about your spirit?  What about that inner resolve that got you up every morning, helped you through each chemotherapy session, and kept you together when you wanted to fall apart?"

and this:
"The beauty that is within you must be uncovered.  It's time for the magnificent victor of the most frightening battle you've face to emerge."

The name of the book can be deceiving because there is so much more in it than intimacy.  It helps you to get back to being a girl again....and feeling pretty.  I never knew how much I loved being a female until they took my breast, hair, hormones, ability to have a child, oh and gained 10-15lbs.

Reading this book has been so motivational to me.  God bless Gina Maisano; she is a beautifully intelligent women!        

After I claimed I was "Cancer Free" I still wasn't satisfied that people would understand so the other day when I was on the phone with a doctor's office at Sloan I asked them to have a nurse call me back.  I wanted to see what she would say I should say to people who ask, "Are you cancer-free?"

So while I was at work the phone rang and it was a church who we advertise in their church bulletin.  Well they called to invited us to a mass they were having for their advertisers.  And guess what- the mass is to pray for good health next year.  How crazy?  Maybe I'm totally nutz - But I took that as a sign.  Never were we invited before and we had been doing this bulletin for years.  OH and did I mention it happens to be the church that I attended healing mass?  I have such a love for that church.

Back to the nurse- she called back and I asked and here's what she said....
"Danielle when you met with Dr. Seidman, he was assured by your surgeon that she got all the cancer, because the margins (area around my tumor) where clear.  When they found cells in your Sentinel Node they went back in and took all the nodes and when they were clear it was concluded you were "cancer-free" at that point.  Dr. S prescribed chemotherapy and tamoxifen to get you to a cure.  Dr. Powell prescribed radiation in another step to bring you closer to cured."  

So I think that pretty much summed it up

I don't know about anyone else, but I knew nothing about breasts until all this.  Here is a diagram that may help someone else.  When you do you own self exam knowing what is in your breast maybe helpful to you.  I am a very visual person and I feel so much better knowing what is in my breasts.  As the diagram shows my cancer, which is the most popular cancer starts in a duct and leaves the duct.  After cancer has left the duct the next place it travels is to your lymph nodes.  Doctors can determine the 1st lymph node taken by the cancer cells and that is called the Sentinel Lymph node.  My cancer cells were found in there.  After they found those they went back and took more lymph nodes (and everyone has a different amount)  they are the green lymph nodes in the picture and they are axillary lymph nodes.

So when you are checking yourself - CHECK ALL OVER!  My tumors were directly under my nipple.     


I'm praying for a dear friend having scans today...will you say a prayer for her as well?


Jen @ said...

danielle -- these posts are going to belp so many people. Your breast looks so sore - ouch. I have a wonderful friend who just finished her chemo too -- she said that the burn was terrible and that she is still really tired. It must really wear your body down.

My other friend who went through chemo and radiation a couple of years ago said that a year after her mastectomy she started feeling like she had her energy back. So hang in there - you are doing great!

That book sounds wonderful - it's so good that you are putting all of your thoughts down. it will help women in the future.

I am in awe of what a strong, sweet person you are!


Anonymous said...

Thank you so much for sharing your story about breast cancer. My best friend of 33 years found out she had breast cancer March 5th and had a double mastecomy March 27th. She has fought this devil called "cancer" with a determination that I am just in awe of. I think I cried more tears about the loss of part of her body than she has. She is now in the process of reconstruction. Again, thank you for sharing, it helps to understand what she is going through a little better.