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…
Related articles:
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!
Keep up the positive attitude, and press on!
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So happy that you are over the hurdle of surgery and on the road to recovery. You’re so lucky to have Danny in your life; he’s a shining star. 🙂 Keep kicking butt!
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I agree with Danny – I miss you. Glad you’re getting back on your feet.
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Awesome Susie. I am so glad you don’t have to go through any chemo. *whew* I wonder if you wouldn’t want to patent that belt you came up with. Could be handy for others in the same belt. So happy to know you’re doing so well.
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I used to think that illness was wildly out of the ordinary, but I learned that it is part of life, you ride it as best as you can and if you work it and are lucky, you survive and thrive. Your attitude rocks our socks, Susie. Thanks for the inspiration!
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You are simply remarkable. A beacon of hope and courage and inspiration. Your Danny is a diamond. God Bless you both…:)
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Well aren’t you just the cat’s meow? I’d give ya a hug but I bet it would hurt. Ever so glad you are starting to come to the surface.
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Susie, you continue to be the coolest! You are an inspiration throughout your journey and you’re right, you are kicking C’s ass and will continue to do so! And thanks for sharing the info about soy – something I’ve been concerned about lately and will definitely read more about. you’re the best – happy thoughts continually flowing your way! xo
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You’re even neater on drugs! Wishing you a speedy recovery, Susie!
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Proud of you! Keep up the fight!!!
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That picture is so amazing….if it was on YouTube it would go viral. Happy to hear you don’t need chemo! Love the education of how all cancers feed on a specific item. Estrogen? Progesterine? Who knew that every cancer is different and has to be analyzed for what it needs to live…. AND WE ANALYSE IT TO MAKE IT DIE! DIE CANCER DIE!
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Susie, so glad everything went so well! You are wonderful.
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My prayers are with you and your family.
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Reblogged this on KimTerry and commented:
What a girl! Am SO reblogging Susie Lindau’s inspiring comeback!
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So glad no chemo is needed!
Thank you for sharing your experiences – you never know who (or how many) will benefit from what you’ve shared.
And that photo? Reminds me of Lara Croft – Tomb Raider. Seems apropos you’d already be taking a kick-butt pose in front of the camera.
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Thanks so much for the update, Susie! So glad you don’t need chemo and that you’re on the road to recovery. You’ll feel better once those axillary drains are out today, too!
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Rock on, Susie!
you are well on your way to slaying this monster!
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So happy to hear you are recovering well and that you won’t need chemo. Rest and take it easy. Stay strong and positive. You are an inspiration, thank you for sharing your story 🙂
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Whew! Soooooo glad to hear a positive report. I remember the tubes. My mother had them too. That was the grossest part. My dad was a real trooper though. He drained and measured and did all of that stuff Danny is doing for you. Some men are truly amazing.
You just rest now and get better. No sense jumping into the deep end right away. It’ll still be there when you’re ready.
Glad to have you back!
Patricia Rickrode
w/a Jansen Schmidt
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Hi Susie – I’m giving you The Sunshine Award next week for your courage and strength. Would love to connect with you as I will be having a bilateral mastectomy myself in the next month. Email address is: suzanne@suzannevince.com. Take good care!
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Thanks for the best opening line ever! Even through all this your humour shines through. Great news all around, #SusieStrong! Can you hear the cheering?
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I just recently started following your blog and I’m so glad that I stumbled upon it! You are an amazing woman and have clearly inspired countless people. THERE NEEDS TO BE MORE PEOPLE LIKE YOU IN THE WORLD. That’s all 🙂
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Susie, you’re amazing. I’m so happy you won’t have to have chemo or radiation and that your chances of getting any type of cancer from now on are so low.
You sure know how to educate your readers while still in a fog! I learned so much in this post. Thank you for all this info. My mom took tamoxifen, too, but I didn’t know how it worked.
Those plastic grenade bottles are surreal. Through parts of this post, I felt like I was reading a sci-fi novel. All the things you’ve been through blows my mind. And having to get out of bed without using your arms! Good thing you’re so athletic. And coming up with a belt to hang those drainage bottles on, way to go! I can’t believe they actually expect people to take a shower with those things dangling from their bodies. So a patient had to invent a solution for this? What the heck? And you came up with this idea while still in a fog. Remarkable.
Your poor left eye. You’ve been through the wringer. I’ve been praying for you everyday and I’m thankful everyone’s combined prayers have been answered. The sooner all this is behind you, the better.
Your sense of humor rocks, as usual.
So you got those armpit plastic bottles removed today? Yay. I hope the fog has lifted and you’re amusing Danny again. So it looks like all will be good for you to keep your vacation plans? I hope so. And I hope you and Danny have the time of your lives.
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Everything you do has a big fat exclamation point attached to the business ended cursive of your sexy gallivant. In non-Cayman Thorn speak, that means you rock the casbah of all things disco and true. Okay . . that’s still Cayman Thorn speaking. Tell you the truth, I don’t know how to rid myself of the guy, outside of an exterminator. And seeing as how he’s way too much fun for such an improper ending, I’m gonna keep shopping for a better idea.
And since I have the song stuck in my head now, let’s do some Clash together. I may not possess your sexy, but the soul is running right along side. Always and steady.
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Been thinking of you — you’re one brave lady. I think it is tremendous that you are sharing so openly. You rock lady.
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