Well that was a huge load off my chest. Sorry. I’ve been dying to tell that joke. I have to make up for lost time. Life has been a little on the wild side since my bilateral mastectomy.
I will be posting a huge thank you to everyone, but I want the fog to lift a little more. You are all the very best! Here’s my update:
I have been in a Jimi Hendrix Purple Haze since the surgery. Dreamless sleep took up most of the first few days. In a slow motion ADD-like state, I would wake up and notice a cloud outside my window. With a growling stomach, I would start to roll out of bed, (the most painful movement of all), then I would give up and lay back down, check my email on my phone, notice a cloud outside my window, hit a few likes on Facebook, realize I was still hungry and force myself out of bed. I would eat something, take my pills, notice another cloud forming in the distance and go back to sleep for a few hours. Then I would wake up and start all over again.
Managing my pain and staying on a pill schedule was and still is the main focus. Thank you Danny!
I lie on my back at a 45 degree angle for proper healing, drainage, and since it’s the only painless position. After sleeping like an Egyptian mummy for a week, I am used to it. Since I am using my ears for ballast, I shouldn’t get any wrinkles. Bonus!
Four tubes ran from my body into clear hand grenade-like plastic bottles. They collect the fluids. It is very sensitive where the tubes enter my body. I held the bottles while taking my first shower then handed them to Danny and said, “Don’t drop them. This like handing you my heart.”
Drains are used for many kinds of elective surgery as well. Two are at the base of my armpit while the other two collect from my chest. The nurse removed two of them today and the uncomfortable armpit drains will come out on Monday. Yes!
I came up with an idea for my second shower – a belt! I pinned them on then realized the tabs are loops. My doctor wasn’t aware of that either until I showed him my fancy belt yesterday.
The drains look pretty cool actually. I had Danny take a picture after my shower.
Locked and loaded.
My husband Danny has been “stripping the tubes” and measuring the fluids since I got home on Sunday. Yep. I had to stay an extra night in the hospital. I always have the opposite reaction to drugs. Why is that? I was still cracking jokes and yammering on about my Boob Report while they carted me into surgery. They must have given me a little extra sedative. It took me a whole week to get it out of my system and I am still not close to being clear-headed. This is the first day I have been able to focus and type.
Believe it or not, the most painful part of the surgery was my LEFT EYE! Do you remember my post about how I sleep with my eyes open? Well, the drugs were so dehydrating, my left eye felt like a hot poker had branded it during the 4 hour surgery. The general anesthetic must only work on boobs or the removal of them.
My first bedside doctor was an ophthalmologist!
Dehydration made it hard to talk, but of course, I talked anyway. Danny spoon fed me ice chips for hours to keep my lips from sticking to my teeth.
I couldn’t pee or get out of bed without nausea on Saturday, hence the extra night in the hospital.
They gave me an IV of anti-nausea medicine and I slept for three hours. When I woke up, I ate everything in sight and raved about the hospital food. I savored the Jell-O like an exquisite dessert! Okay. I must have been really out of it.
Danny drove me home on Sunday. I had to learn how to get in and out of bed without the use of my arms. Man. I use them for everything, but my feet are becoming pretty dang dexterous. I learned that if I lie on my left side and hook my right foot on the outside of the mattress, I can pull myself upright. Ingenious. I know.
The doctors wanted me walking right away to increase my blood flow and rid the drugs from my system. It really does help!
The pathology results concluded I am in the thirteen percentile for recurrence of any kind of cancer. Low numbers are good. The way I look at it, I have an 87% chance for never getting cancer again! That means, …drum roll please…NO CHEMO!!!
Chemotherapy reduces the chances for recurrence by 25%. Since my Oncotype percentile is 13%, chemo would only reduce my stats by 3%. It wouldn’t be worth the side effects. Yay!!!
I will take the pill, Tamoxifen, (a pretty cool drug), for at least the next five years. You see, every cancer thrives on something. My rare lobular cancer thrives on estrogen. This pill mimics estrogen and if any cancer cells start showing up in my body, POW! The Tamoxifin blows them up!
Radiation was never in the cards since my lymph nodes are clear (so is the left breast), and there is nothing left to radiate. No boobs = No radiation.
I would like to nominate myself as the poster child for EARLY DETECTION. Yeah. I got lucky. I listened to the news about how women don’t need mammograms every year, so I skipped 2012. The cancer would not have shown up on a mammogram last year because lobular cancer is fingerlike. If I had skipped this year, I would be screwed and not in that low percentile. Scary!
Schedule a mammogram every year during the same month. Some cancers grow very fast compared to mine.
You don’t want this kind of ride. It was NOT fun.
I had four tumors. They were 1 mm, 2 mm, 5 mm, and the largest was 16 mm. That stinkin’ thing had been growing in me for five to seven years!
Everyone’s cancer is unique. Who knew? There are many different combinations which require different treatment. Remember, I am that 1 out of 5000 healthy women who had (nice to put that in the past tense!), lobular cancer. It has an estrogen receptor, but it could have a progesterone or a non-hormonal receptor. There are 21 genes in the breast cancer’s DNA and all of those are studied along with many other factors to come up with each individual’s Oncotype score. You can’t compare cancer or treatments.
Some cancers are very fast growing and feel like a pea or piece of hard bubble gum. Mine grew at a moderate pace and mimicked the surrounding tissue.
Estrogen is my enemy. I will be avoiding all forms of soy and flaxseed since they raise estrogen levels in pre-menopausal women. I tried to figure out why I got this hideous and dreaded disease. I am suspicious of the soy craze that hit several years ago. Being somewhat lactose intolerant, I loved the taste of soy milk. I drank it until my periods got wonky and my breasts became tender all the time. I began avoiding products with soy and found it was even in our vitamins! It continues to be in many foods including organic bread. My children’s pediatrician recommended never giving any soy products to my daughter and that was many years ago.
Scientists are beginning to study the link between soy and certain types of breast cancer in women who are pre-menopausal. It takes years to get results. We’ll see.
In the meantime, I’m working on healing up and feeling normal again. My normal means kidding around and making dumb jokes. I asked Danny if he liked the “quiet me” this past week. He replied that he loves my crazy off-the-wall way of thinking about things and he missed me. What a guy!
Thank you so much for all the amazing support. I truly believe that the reason I have an amazing prognosis is because of YOU!
I will be writing a proper thank you when the fog completely clears. The purple haze still lingers, but at least I can see the door. The floor, not so much…
The Boob Report I – Roadblocks and U-Turns
The Boob Report II – Laughter is the Best Medicine
P.S. Typing hurts, so I am reading, but not commenting very much at this time. Thanks again for everything!
Thrilled to see something from you. And the funny Susie phrases. (” using my ears for ballast, I shouldn’t get any wrinkles” Funny – I know it’s sad – but it’s funny!)
They never tell you about the difficulty with arms – you sound like you’ve got a toe hold around that.
Jello is a treasure.
Soy – warnings have been raised – especially with children on vegetarian diets. Evidence is high with triggering breast cancers and thyroid diseases. Some groups don’t want to hear it, but soy may not be your friend. BIG thanks for mentioning that warning.
You look good kid. We are the sum of our experiences – and you are building something great with this one.
Turnip the volume, it’s quiet in here.
(Glad you’re wilding again!)
thank you for sharing this journey with others. Perhaps someone will take your advice about getting checked and save their life. You rock, Susie.
What can I possibly say at this moment?
I’ve spent my life reading of heroes and fantastic tales, but you’re the real deal, Susie Lindau.
You have my respect, admiration and love.
You are a rock star, Susie! Happy to hear your positive prognosis and thanks for being there for us even in YOUR hour of need. Be well! We need you to guide us on the wild ride!
So glad to hear the good news…and the joke. I think your attitude is going to make a huge difference in your recovery, so Danny won’t have to worry about a quiet Susie for long. Keeping you in my prayers and looking forward to reading more from you…for decades to come. 🙂
I had a very optimistic visit with a cancer Dr. yesterday on options I have with radiation in my situation. These optimistic reports have turned my world around after that first dismal diagnosis. And so I hoped in my car, put it in gear and this songs came on…on an 80’s radio station. And I had to sita while an dthink. I thought you could appreciate the song too…keep healing my friend! http://www.youtube.com/watch?v=rW0WSLEarqs
I’m so glad your recovery is going well. Only you could come up with such a clever/fashionable solution to the drainage issue – locked and loaded! No chemo or radiation- yah whooo!
I’m a bit concerned about the soy connection you mentioned. I read that taking soy PREVENTS cancer in teen and young adult women. I have been feeding it to my girls for almost 10 years. I’m going to have to study up on this topic some more.
Hope you’re feeling better and stronger every day, Susie.
Oh Pegoleg — please DO read up. It’s just the opposite and soy is not in any way a miracle food. It’s intake should be limited, particularly in women. It is a plant ‘estrogen’ and the primary component of all the ‘natural hormones’ you hear about. (Think Suzanne Somers and her “bioidentical hormones”).
AMAZEBalls News – No Chemo, No Radiation and a Low % of reoccurance – I knew you would KICK BUTT!!! Take It Easy and DO NOT Overdo It – Sending Good Thoughts and Prayers are your recovery:)
I have only recently discovered you through the phenomenal folks who blogged about you on the day of your surgery. So glad you won’t need chemo or radiation, and you look great, even with all the drains and tubes.
In addition to avoiding soy and other estrogen-containing stuff, also try to buy organic when you can. Many pesticides have a molecular structure that is very similar to that of estrogen, and the body doesn’t always tell the difference. And there have been studies that suggest that pesticides can fuel the growth of cancer cells.
Thank you for sharing your experience and for showing how important early detection is!!! Hope you heal up quickly!
Hoping for an update to show you’re OK – a paragraph will do! Even a one-liner …
So glad to hear you’re news. Take it easy and get well soon 🙂
So glad you can avoid having to do chemo!!
Way to go dude!
You are clearly an inspiration to a ton of people, really glad all went well and you are on the mend.
You’re a damn brave woman, Susie (not to mention, creative!). Wish you a speedy recovery now that you are tumour and soon-to-be tube free…
Well done to you, Susie. I so admire your courage and sense of humour through all this. Wishing you all the best on your road to recovery. Gentle hugs to you. 🙂 xx
I admire your amazing attitude. Thanks for sharing your story, Susie. And congrats on the wonderful news of no chemo.
Hey you Wild Riders. I usually reserve this blog for last, because that’s how much fun I get out of being here. But tonight, it’s been a while and I had to get here first if only to let you know that I think about you guys every single day.
I have nothing witty beyond that. I’m just thinking about you both, much. And sending love. More.
Oh yeah — whatever you do Danny *don’t drop the grenades!* That’s a sexy look there Six Gun Annie. Amazing how well you look considering what you’ve described in your posts. I’m privileged to have been able to ride shotgun along with you on this journey Susie. Fantastic story. I’m sure you’ll put it to good use. Someone’s life will be changed be it. For certain. Cowboy on girl!
Amazing journey and wonderful writing. Thanks for sharing.
Welcome back. I’m having a little celebration here. Yay!
Susie, ive been away a while so just catching up on everything – im so sorry its only now that ive come back! my thoughts are with you xxx