I’m going to be completely honest. I HAVE THE SHITS OF THIS NONSENSE!!! I can’t wait until all of this is over. I can’t stand radiation therapy. I was told that radiation is the “easy” part…..the downward slope. Well, it sucks! I would take chemo or surgery over radiation any day. True story! So, let’s bring back a top ten list.
TOP TEN REASONS WHY RADIATION TREATMENT SUCKS:
10. My idea of a strapless bathing suit is out the window for this summer! Because radiation has a cumulative effect, my body will still be frying like bacon for a while after I’m finished. Bring on the surfer wet suit for me! I’m not missing time in the pool with my kids this summer because of radiation. I’ll be in my backyard covered like a NASA astronaut…..but I’ll be in the pool!
9. I’m not in control of it. At least with the mastectomy, I decided when I got out of bed, started moving, pushed myself, etc. With chemo, I watched the medication go into my port. I felt like I was somewhat involved in what was happening. With radiation, everything is completely out of my control. I’m laying on a table and I have no idea what or how things are happening.
8. My chest is red and itchy.
7. I have esophagitis. My esophagus is swollen so I’m having trouble swallowing and eating. The silver lining: losing the last 10 pounds should be a cinch at this point!
6. I’m in a white room all by myself for 10 minutes.
5. I feel like a corpse laying in a casket.
4. I’ve mentioned before about how the smell of smoke really bothers me now. I can’t get over the number of people waiting to receive radiation therapy who reek like cigarette smoke. It’s unbelievable to me. You have cancer and you smell like a carcinogen! What are you thinking and why do I have to smell you?!!
3. It’s monotonous…..and exhausting. Driving to the same place every day Monday through Friday for a 10 minute appointment. Don’t even try to compare it to work. We get paid when we work! It’s more like the movie, Groundhog Day!
2. I’m losing my taste for coffee. You might not consider this a bad thing, but I do! I love coffee!
1. I’m going to let all of you in on a little secret. Sal Sciandra doesn’t even know this. Last week, I laid on the “radiation table”…..inside of the “tube”…..alone in the treatment room….during radiation therapy…..and I cried as I listened to the “squirrels” running past my head. 10 minutes in a room by myself with no distractions laying completely still gives me way too much time to think about what’s actually happened/happening to me. Like I said, I’m ready to get off the ride now. I’m all done!
I was humbled yesterday afternoon at Jameson and Chase’s opening day of tee ball. Christy Savakinas mentioned to me that Liberty Tax would be doing something for the upcoming fundraiser during opening day ceremonies. Well, they had a tent set up with a bunch of tables selling raffles for all of the beautiful Baskets of Cheer. I’m lucky that I had black sunglasses on because I couldn’t help but cry. They raised almost $800 yesterday which is awesome. I can’t thank all of you enough for your kindness and generosity. Now, I need to figure out how I’m going to make a difference. What will I use these funds for to make a real impact?
6th Annual Liberty Tax Fundraiser:
Pre-Tournament Mixer
When: Friday, May 24, 2013 Time: 6-9 PM
Where: The Brickhouse, Dupont, PA
$5 donation at the door which includes raffle tickets for Baskets of Cheer
Raffle baskets, 50/50, drink specials
** If anyone feels so inclined, Baskets of Cheer are needed.**
6th Annual Golf Tournament
Benefiting Breast Cancer Awareness in honor of Barb Sciandra
Where: Stone Meadows Golf Course (Route 115 Buck Township) Dupont VFW (Dinner)
When: Saturday, May 25, 2013 8 AM Registration, 9 AM Shotgun Start
Format: Captain & Crew
Cost: $80 per golfer (Fees include: green fees, cart, dinner, shirt and prizes) $20 dinner only option
Sponsor Levels: $100 (Gold), $50 (Silver)
For more information, contact Jeanna Mihalka at 570-237-0521.
Our friends were also kind enough to set up and online donation site if you wish to do so. The following is the link: http://www.donationto.com/Liberty-Tax-Barb-Sciandra-Fundraiser
So, I can’t wait until all of this is over. My biggest worry at this point is the “what if” question. What if it comes back? I’ll do whatever I need to do to keep fighting, but I don’t want this to be my family’s life. I don’t want Sal to have to deal with this for the next number of years. My kids won’t really remember 2012-2013 and I don’t want them to remember it. I don’t want my kids to think that their Mom shaving her head and undergoing surgery or treatments is normal. None of this is normal. I want to be here for my husband and my kids. I want to be alive and healthy. It’s tough not to think about your own mortality when you’re faced with something like this. I don’t want to die. I’m not ready to die. How can I be blessed with an awesome husband and 3 beautiful, healthy children and then not be given the opportunity to raise them? I read a book called The Last Lecture a few years ago. I have it sitting on our entertainment center with a few other books. I picked it up to start reading it again and I had to put it down. If you’re not familiar with the book, consider reading it. It’s an easy read and it’s really an excellent and inspiring book. Randy Pausch, a married professor with 3 small children, was diagnosed with terminal pancreatic cancer and put his last lecture at Carnegie Mellon into a book. I couldn’t read it again because it hit too close to home.
Anyway………
I have some television updates for you. Please don’t think that I forgot about How I Met Your Mother. I was on such a kick because Sal and I were watching seasons 1-7 on Netflix every single night. I can’t wait to watch season 8 in its entirety. It’s the greatest show ever! If you watch television, check out The Mindy Project. It’s hilarious. I was watching Dateline the other night and I had a revelation. If I don’t make it to heaven right away, I’m going to have to listen to Keith Morrison while I’m waiting for the pearly gates to open! He has such a creepy voice! I recently saw Oprah’s interview with Chelsea Handler. Handler is a handful! She is so funny! I realized something as I was listening to her. She said that people act like they know her when they meet her. She said, though, that they really do. She’s not an actress and she’s real when she writes. I got to thinking that anyone reading this really knows me, too. I’m being honest and I haven’t candy-coated anything. Each one of you has a very personal look at what’s going on in my life and in my head.
I need to mention something else tonight. I can’t stress it enough. BE YOUR OWN ADVOCATE. What is wrong with our healthcare system? One of my very good friends whose Mom is undergoing treatment for breast cancer got a hold of me to tell me that her OB-GYN didn’t see the need for her to have a mammogram. My friend will be 35 at the end of this month. Are you kidding me?? Luckily, my girlfriend is smart enough to know how messed up this is. She’s making arrangements to have the mammo done through another healthcare provider. What the hell???? If she just put her trust in the provider that normally schedules this type of test, she’d be waiting until she’s 40. Her Mom’s genetic testing is negative but we all know that it doesn’t really matter. My genetic testing was negative, too. This just means that my mutation isn’t the common, BRCA1 or BRCA2. Get this, I just learned that my paternal grandmother most likely had breast cancer. She passed from liver cancer but the doctor told my family that the liver wasn’t her primary area. My grandmother’s sister had breast cancer and so did their mother, my great grandmother. This would have been useful information for me about 20 years ago. Anyway, my point is this: your doctor is in charge of your healthcare but so are you. If you want a test scheduled, find a way to get it done. If you feel like something isn’t right, seek advice from your physician. If you’re not satisfied with the answer that you receive, go for a second opinion. This is so important. It’s your life. Take control of it.
One last thing. I feel as though I’ve earned the right to call people a weenie. Don’t make me call you one. It’s not a form of flattery!
“The brick walls are there for a reason. The brick walls are not there to keep us out. The brick walls are there to give us a chance to show how badly we want something. Because the brick walls are there to stop the people who don’t want it badly enough. They’re there to stop the other people.” – Randy Pausch, The Last Lecture
LIVESTRONG and God Bless!
Inspiring as always, Barb. Thanks for being so candid about how you’ve been feeling. Of course you’re scared and nervous about what the future holds. If you weren’t, you’d be an absolute weirdo. I’m sorry that radiation has been such a traumatic experience for you but hang in there!! Even though it sucks, it is, as you put it, frying you like bacon. This can ONLY help! I love you and LIVE for this blog. Thanks for the update and continue to kick down those brick walls…noone wants and deserves their wonderfully fulfilling life more than you! <3
although I didn`t have radiation I completely feel for you. everything about cancer sucks.it changes everything and not a day goes by that that you aren`t reminded or worried. i am so over it. another surgery scheduled for june. it was 2yrs ago that i was dx.so many problems with the expanders and finally getting the implant exchange.expanders are so uncomfortable and makes the simpliest of tasks seem so hard to do. emotions run high and i often wonder about the what if`s and how i make it through each day. of coarse your scared and nervous and want to be here for your family but that’s the reason we fight. thank you for sharing your story and i am looking forward to our progress.
Oh,Barb — I can’t wait to meet you!! I DO feel like I know you from our one phone conversation and my reading your blogs — which I SO love! Your are an inspiration and everything you write is true and honest and funny and humbling, quite honestly. I hear that you and Sal may make it to Bethany this summer with the Kiefer gang, which means that I’ll get to meet you in person!! MY great pleasure and I’ll sit with you under the umbrella so we can protect your precious new skin 🙂
Love, Becca
Barb, If part of your “legacy” isn’t putting some of this into writing at some point for more people to see, I don’t know what is! You are hilarious, candid, and touching. I think of you every day and pray that you will see all the wonderful moments of those kids’ lives that your little (NOT) heart desires! Much love, K
Hey Girl — you are entitled to a good cry!
Love and hugs from Malvern.
Barb,
well this blog makes me feel a little better. you are mad and tired of it and i have not heard this side: the side i would of gone to months ago!! It sounds strong and continuing to fight……….but you are right about it all: you have to take charge of yourself and your health, read the Randy P lecture, make disgusting faces at smokers and the smell of it;(as i get older i am almost rudely intolerable of it),take Chelsea at face value,love her or hate her; she says it like it is; and continue to be thankful and blessed.
yes, i feel like i know you from all the blogs; you are pouring your heart out and you are doing it with facts, honesty,laughter, inspiration, music, poetry and thankfulness.
sure do hope this recent shitty part of the therapy gets easier or is over soon. this downhill seems very uphill; my prayers continue.
hugs,
B