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!
A real ordeal–good news about the chemo. Wishing you a speedy recovery and many years of good health.
Wow, was I ever out of the loop. Really sorry to hear this news, but it’s great that you’re on the road to recovery! I’ve been down as hell lately and a right self-indulgent, mopey little git, and your attitude here is a real eye-opener. I will now commence following your example and kicking myself into touch. And nagging my mother, sister, aunt and niece to get themselves screened.
PS: Is it weird that I’m completely jealous of you getting to use the “load off my chest” gag? Cos I am!
So happy for you that you’re free from the chemo …. wonderful news, that is an experience I don’t anyone to go through. Amazing how great you look … with all those drains – you’re one massive star, Susie.
And for somebody that get pain from typing .. you are a true super trooper.
sorry, my Swenglish … typing quicker than … thinking.
Super Trouper it should have been.
Didn’t know the info about the soy and flaxseed, so thanks for sharing that!! Plus, you just totally rock, anyway!! 🙂
I am so happy to hear how you are doing! Can I say Almond Milk? I don’t believe it has any soy (I avoid soy, too, because of the estrogen) and the carbs are effectively 0. My diabetes loves it!
I understand about the arms and feet too. Mine is opposite; my arms are strong and my legs are weak.
Keep hanging in there,
Hey Scott! I am doing great! I played a full hour of tennis today. I even served. I’m back!
I have been drinking coconut milk. Almond is yummy too! I am glad you are doing well too! 🙂 Thanks for stopping by!
Hi there, I just found your blog. I too am having a recent boobventure. Diagnosed with stage 1 invasive ductal cell CA in the left boob in a random mammogram just this past October. Im still recovering form my bilateral mastectomy, I choose to reduce my chance of recurrence to almost nil as well. As I read your posts, I was like “OMG thats me”!!! I have built up some strong lower ab muscles pulling myself up using the mattress and heavy blankies as weights. I get a pass on chemo too-just got a 2nd opinion oncologist to make sure Im making right choices, happy dance (I know, the words “I have an oncologist”, ugh) I am slowly building up my exercise routine again, using my Pilates reformer and slow jogs on the treadmill. I hope to finalize my reconstruct with the implant switch out in April, these freakin spacers are horrible! How are you today? What do I have to know to expect? Thanks for making me smile!
That was such a great decision to get a matched set! You’ll be fine!
My cancer was estrogen positive, so I avoid soy and some beans that raise my levels. I also stopped drinking alcohol to keep me from worrying about recurrence. I’ll be off the medication in 6 months (yay!) and then I’ll really be careful about what I eat in restaurants, just for my peace of mind. Right now, Anastrozole blows up any estrogen in my body, which as you can imagine, leaves me with less of the hormone than any healthy male!! It tends to flatline my energy level, BUT some people don’t have any side effects from Tamoxifen (used it for 2 years pre-menopause) or Anastrozole.
I’m 4 1/2 years out and doing great, thanks! The reconstruction should be a lot easier for you. Mine was a nightmare since my surgeon didn’t like one of my boobs being higher than the other. He reopened the stitches and redid it. Looking back, I’m glad he did!
I wear bras and bralets (light-weight spandex bras) all the time and even sleep in them, otherwise I would wake up when my boobs would slide out and hurt my sternum. Sport’s bras kept them together. Last night was the first that I slept without one. It didn’t bother me at all, so I’ll probably stop wearing them at night. At first, I would lay on my back at night. They still look pretty symmetrical and haven’t sagged. (My left is a bit bigger since it’s over my heart.) I think a lot of women go braless afterward, but Silicone is heavy and our bodies can stretch out. I don’t want any unnecessary surgery!
The other thing that is crazy weird is the feeling came back in both of them!! Ha! I love it since I can feel when I’m bending over gardening and a branch pokes them.
This will be a speed bump for you. I have a few more Boob Reports to write. It sounds like you’ve been reading them. Click on the Boob Report category for more about my experience. I hope this helps!