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Tuesday, September 21, 2010

Radiation 101

Well I was supposed to start radiation last week.  I went in for the simulation and markings etc. and the radiation oncologists (R.O.) said my heart was positioned in a very weird way inside my chest.  This is due to the fact that I have pectus excavatum.  In other words, my ribs cave in slightly instead of having a nice curvature outwards.  My left ventricle is sticking straight up/out the chest wall instead of pointing to my side where it should be.  So no photon radiation for me as this cannot be done without radiating the heart.  The R.O. said she would use electron beam radiation because the depth can be controlled and it can be done without affecting my heart.  I really have had to try to sort this out in my head because I just did not have a good feeling about the whole thing.  I keep thinking "what is God trying to tell me about this?"  The two ladies in the radiation room who get me all set up are very personable and nice. So I started yesterday, Monday for the first treatment after questioning the doctor some more with Kevin in the room.  (In case you don't know this, our doctors don't like this very much.  We were told that we wouldn't understand because we did not go to school for twelve years to study how to give radiation.  Well, darn it!  I  found out I am not a doctor and my questions are irritating and not really that important.  It's too bad in those twelve years of schooling they don't emphasize doctor/patient communication more!)  Blah, blah, blah!  Whatever!  Kevin and I had to bite out tongues to keep from giving Miss R.O. America the "what for".   It doesn't take long at all to get the radiation, but I am already feeling some sting from it.  I am still dealing with some pretty severe fatigue.  I could literally sleep for 10-18 hours at a time.  Then I will have a burst of energy and I am down again. 


 Today I slept until it was time to get up and get ready to leave for radiation.  When I got home, I put my IPhone on the speaker mount and I began cleaning.  Years ago I taught all kinds of aerobics and exercise classes.  Now I can turn house cleaning into a workout, especially now that it is so easy to get winded.  So I have done laundry all day and vacuumed.  Then I mopped the floor with my feet and a towel and a bottle of cleaner.  All done with grace and style, I might add...to some really good music.  Ok, now if you are believing the "grace and style" part, well we've got to talk.  It was a good one hour heart-pumping work out.  The steroids have left my body thankfully, and I feel like I have a chance to start slimming down...if my energy decides to lend me a visit every now and then that is.  I will tell you one of my side effects of the radiation.  Many of you remember the early days of the tanning bed's popularity.  Well, I was working in health clubs during those early days and I would tan for literally an hour or more at a time (there were not the restrictions like there are now).  Of course I would never let anyone in the general public do this, but we employees used to lay in the beds after hours WAY past the suggested maximum time limits.  It was then that I discovered the term "prickly heat".  This is when you feel something like needles poking you after overexposure to the sun or tanning beds.  Well, I felt that the first day after radiation and today too!  The weird thing is, I did not feel it in the area that they radiated.  I felt it in my lower right leg, my left leg, and a few other places.  Very strange.  I also noticed that I have an appearance of lines across both sides of my chest even though the left side is the only one being radiated.  The lines almost look like sheet marks...or whelps.  They were there after both radiation sessions, but gone by morning. Anyways, I lay on the table in position and I stare at this opening in the acoustical ceiling tile.  Someone has deliberately carved out an opening so that a laser beam of some sort can pass through the tiles to line up with the machine.  There is some sort of mechanism up inside the ceiling and I can see the red beam shining out of the opening.  So I stare, and I focus, and I pray.  The opening is the shape of a cross.  I just keep my focus on that and I pray for God's protection and healing.  I pray that I made the right decision.  Leave me a comment on my blog if you like.  I took the filter off so there should not be a problem.  If you leave me a comment through my postings on facebook, then all who are led to this blog are missing out on your comments.  I have had some excellent advice and so much encouragement.  I know there are other triple negative survivors that are reading this that need your words of support too!  Click on "comment(s)"  below the blog in tiny print and leave me a word.  Until next time my friends...

12 comments:

Cindy said...

Just wanted to tell you I love you, sis!

vicky said...

hey penny have been thinking of you all day today and yesterday. as i sat at the doctor yesterday for 3 hours just for typical check up stuff - i grew very impatient and weary and though Lord it is only by your grace that Penny can face all this stuff done to her everyday for months months - my sweet friend i love you, all this will pass and to God be the glory!

Sjaron Tucker said...

Penny you are a strong person and with God by your side you will get though anything. Keep the Faith and I will never stop praying for you and your family.
Love an old friend
Sharon (Martin) Tucker

Ellie K. Belfiglio said...

I am sure after all the first, second, and... opinion, you'll be just fine with radiation. There must have been a reason for the delay. I think the delay was God sent so we all make sure that kind of radiation you get, do not harm your heart of gold.
Hang in there my child. Pretty soon You'll be whole again. Your family loves you. that includes us.
Love youuuuuuuu
From here to there

SingingWarrior said...

I'm glad you got Kevin to help you go in there and make them answer questions. They need to answer them. They need to educate their patients. They should have received that training in med school. I know I did in nursing school. Had my friend, who lost his battle last month, asked more questions, he would most likely still be here. The law suit started this week, as malpractice was confirmed. So, keep asking questions! This isn't their life, it is yours! Asking questions is your metal bat in the dark alley beating up Cancer!

Yolanda said...

Love that you found the hole in the ceiling and that it looks like a cross. I believe this is a sign. He is always with you, and will never leave you.

Steven said...

I agree with someone that said, "Make them answer your questions....make them explain to you and help you understand" It is about you...and you NEED to know what they're doing. You're always in my prayers, Penny.

Anonymous said...

It is interesting that all that education sometimes makes people forget they are selling their services and we are the customers who can choose to find other providers. We didn't come to visit for a social call and we are not their to win friends and influence people we have come to buy their services and in exchange they will get paid so maybe in medical school some customer service and marketing classes should be part of the curriculum. I love you keep strong! Love Susie

trudann said...

Hi Penny, I am a two time TNBC survivor. I had the electron beam the second time (had the regular radiation the first time). I cracked a rib doing some mild exercises, as rads had weakend my bones, but I recovered. I loved watching the machine too, the one I had (at Mayo in Scottsdale) looked like "combs" controlling the direction and depth of the rads. It was amazing! I had chemo, rads, 2 surgeries, am now 63, had first dx at 54. I work everyday, own my own business, and have a pretty busy life. Just wanted you to know there is life after BC, and it is good. Prayers are being said for you, Trudy Samuelson

Kristine said...

Remember, those cancer cells are down for the count and are now getting the final blow! I know what you are feeling about the attitude - got it suprisingly for the first time from the lady doing my mammogram (first one since treatment) - I had scheduled an MRI (being my own advocate) on my good side, which has also cost me an arm & a leg, and they threw in a mammogram as well that I did not know about. The lady told me that I need to learn to be my own advocate and know what my appointments are about - can you believe that?! I did not bother arguing as she had absolutely no idea and neither do those doctors - it is your life they are dealing with and they need to answer your questions - could you imagine where you would be if you didn't? Go for it, be demanding and get mad if you need to, this is your life!

Brooklyn said...

Mrs. Penny, I just wanted to tell you that i pray for you every night and that I know God has great plans for you! You give me hope, Mrs. Penny! I love you! :)

willow58 said...

Prayer will always take you through. It is the best thing you could possibly be doing during these treatments. Make sure you listen to. God is always speaking. Unfortunately, we are not always listening.