My Pink Ribbon Story - Part 2

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Status: In Progress  |  Genre: Memoir  |  House: Booksie Classic

Part Two of my Pink Ribbon Story Details Surgery, Recovery and Hormone Therapy.

Just a reminder for all the readers. My goal is to write down my experiences to help my kids understand what their mother went through and to possibly help future survivors!

Part 2: Surgery and Beyond 

I’m not going to lie to you...

I’ve struggled to write this next chapter in my journey. Initially I felt like a knight strategizing for a battle. I was making a plan of attack, gathering my doctor troops and forging ahead. However, when the battle is over, and you look at what is left on the field, it’s hard to process. This is kind of what happens in a double mastectomy. You may have made a great strategic move, you saved your life, you’ve won! But... now there is a lot to process and many more hard decisions ahead. You won this battle but there is still a war to fight. 

The days before surgery were nerve racking. I went through a strange nesting phase. I ordered all the Christmas presents, prepared for every moment of my kids’ lives I felt I would possibly miss or not be able to be present for. I set up to have my parents move in. We could definitely use an extra set of hands in the coming weeks. Once I knew the kids were taken care of, I turned to me. 

I searched mastectomy websites trying to get advice on what I needed and what the process would be like. It’s interesting as a researcher, I always felt like learning everything possible before making a big decision was critical. I have even criticized patients for not being more in control of their own healthcare decisions when designing care navigation webpages for the exact hospital system I would now be a patient at. Isn’t it ironic... don’t you think? However, I swiftly learned that the internet is NOT always your friend. Every scary story, experience and picture would send me into a whirlwind of despair. I simply decided to stop researching. Stop learning. Stop reaching out for help. I decided to self-protect and walk forward blindly. Learning was hurting me; not helping. I chose to think that I am unique and that my own experience would need to be my own. I had to have faith in the choice I made. Have faith in the team I had chosen. I needed to move forward knowing God and my family were going to be by my side, no matter the outcome. 

PRE-OP

Prior to surgery my Oncologist increased by cancer stage from Stage 1 to Stage 2A. He didn’t like that the MRI showed swelling in my lymph node. Obviously, this created more fear in me. It also complicated the surgery. 

Now the process was that I would get to the hospital at 9am. I would have four injections around my nipple to put in tracers that would show where my closest lymph nodes were. During surgery they would take out all my breast tissues, ligaments and take out the first few lymph nodes to test while I was under. Yes, a person’s job that day was to take parts of my body on a tray and walked them across the hallway to the path lab to be tested and see if the cancer spread. They would know right then if my situation went from bad to worse. 

I had come to terms with the loss of my breasts but finding out the moment you woke up if the cancer had spread was a scary thought. 

 

SURGERY - 3-hour process (1.5 breast surgeon. 1.5 plastic surgeon)

My surgery was scheduled at 2 pm so we waited in pre-op. We saw patient after patient go back for surgery. It was humbling to see how many people needed help for so many different reasons. My surgery got pushed back till 4:30!!! It was a long wait and stretched out an even harder day. 

We watched movies, read the Bible, and prayed over what was about to happen. When I’m with Brent, I feel calm, protected and overtly loved. So, the wait wasn’t bad. He did great trying to distract me and make me laugh through the wait. It wasn’t till they came to get me that he broke down. He was scared and just could not control it any longer. He cried. The surgeon put her hand on his shoulders, she promised him it would be ok. She asked him to please stop crying because he was making her cry. It’s interesting when my partner breaks down, I tend to stay strong. I didn’t cry. I just don’t in these situations. I assured him I was fine, and he could go. He left me as I was wheeled into the operating room. I got up on the table and took a few deep breaths and was asleep. 

I woke up in a flash. It felt like I only slept for 3 seconds not 3 hours. I remember looking around in recovery and saw a nurse. I instantly asked her if the cancer spread. She said your husband will be back shortly to sit with you. He has spoken to the doctor. So, I waited... it felt like a long time to wait to know if your cancer was localized or metastasized.

Now I know I’ve been through a lot. But for a minute let’s talk about what your poor dad went through. Brent had been waiting till 4:30 too with me. No food. No drink. Nothing. He ran to get food and rushed back. While waiting he met another husband waiting for his wife who also had a double mastectomy that day. They briefly compared stories and comforted one another. He waited for Dr. Saigal to come out and tell him if my lymph nodes were clean, was able to get clean margins and if I was fine. She had a smile on her face. He knew I was totally clean. No cancer had spread and she was able to cut it all out. Totally clean! It was great news!! Finally, some really great news!! The other husband also got the same great news! Thank God. 

Now I knew your dad’s day would be hard. Secretly, the week before, I texted a good friend of his, Bryan and asked him to stop in at the hospital to check in on your dad. I just didn’t know what the news would tell us and I didn’t want him to be alone. In this marriage we take care of each other. Remember that. Think of others even when your down. I knew a friendly visit would be just what he needed and I think it really helped! 

 

POST-OP

When Brent came in to see me. I wanted to reassure him, I was fine and I really was! Mama is tough y’all. He told me the great news and I was so relieved. I just wanted to get home and kiss my babies. We got to leave the hospital because I was doing so well. Brent sprinted to get the car. I told the nurse while watching him nervously run to the car how lucky I was to be married to such a good guy. We got home by 9:30. The kids came in and gave me a kiss and I was off to sleep!! Thank God for good meds!

Over the next three weeks recovery wasn’t as bad as I thought. Each day got better. I was off all the medication in just three days. Christmas was shared with family and friends! It was a Christmas I will never forget. I sat back and just soaked in each smile and laugh. I knew how lucky I was to even being present. 

I want to point out a few things that helped me heal faster...

  1. Focusing on my Faith - During this time, Brent and I have made a conscious effort to get closer to God. It’s not hard to do in these situations. However, I struggled to find my own way of strengthening my relationship with God. I’m not a traditional person so it has taken me time to find ways to take in His words that aren’t done through traditional means or organizations. I’ll admit, I am still working on this but I’m trying each day to connect with Him and take time out to be grateful for the life God has given me. If you all ever feel lost, my advice is to start somewhere and grow each day. That’s what I’m doing! 

 

  1. Family First - I had my parents living with us and wow did we feel lucky to have them. They helped with the kids, running them around and with my medical needs. Plus, we had an army of family and friends dropping off meals, gifts, flowers and sending the kindest notes. It’s so nice to feel loved by so many!

 

  1. Health is Wealth - I think my fitness and health journey really helped my surgical recovery. I state this because it has always been important to me to be healthy and physically and mentally strong. This isn’t about looks but about your overall health and internal grit to want better for yourself. I want my kids to learn how important living a healthy lifestyle is and be active in their lives no matter their age! You are lucky to be able to move... so kids... get moving!!!

 

POST SURGERY RECOVERY - Fill Them Up!

After surgery, you visit the Plastic Surgeon the most. He leads my recovery. The initial meeting was a “dark day”. I was able to see my breasts without bandages. It looked like I got ran over by a car. I’ll spare you the details, but it wasn’t great. I got my first fill up and rode home in the car with Brent in silence. It was a lot to take in. The following fill ups made my “breasts” look more recognizable. You’d be surprised that the fill up didn’t hurt. It is a strange, strange experience but overall not that bad. As I write this today, I’m truly fine with where they netted out. Only Brent and I would know there was an issue. The spacers are hard and uncomfortable, so I’ll be excited to change them out for implants. However, you quickly learn looks are relative and in the end it really will all be ok! 

 

ONCOLOGIST - Here is where the war is fought

After alllllllll of this you’d think I couldn’t get knocked off my feet. However, my post-Oncology meeting had me on pins and needles. This is where you find out if Chemotherapy and Radiation come into play. My tumor was taken out and shipped to California to be tested and scored. At this meeting we would learn if my score was good or bad. The nurse (Amy) came in smiling. She said I didn’t need to give blood which is normally done in each of these visits. It was a good sign! As she left the room, we both looked at each other smiling. We read the room this time and it said - GOOD NEWS!!! The doctor came in and stated my Onca Score was very low. On a scale from 1 to 50 my score was a 15!!!! Anything less than an 18 meant NO Chemo and since my lymph nodes were clean NO Radiation. I almost cried. I didn’t. But you guys… I was close!!! We high-fived in a small victory party and then the conversation went quickly into overload mode...

Yep, don’t get to excited because hormone therapy was still on the table. 

Now I don’t want to take away from this chemo victory, because I realize how super-duper lucky I was. And I am... I just wasn’t aware of the next requests from my Oncologist. 

He stated hormone therapy would be aggressive. He wanted to freeze my ovaries putting me fully into menopause by giving me a deep shot in my butt every 3 months until I chose to take my ovaries out through surgery. He would also like me to take an oral medicine for the next 10 years. I’ll hold for your mind to catch up..... because my mind was spinning. As I’ve mention before this is a long journey. Now it was confirmed to be a 10-year journey. Emry is 9. So, this treatment meant I would be dealing with this until Emry is 19. 9 to 19..... take that in. It’s still hard for me to grasp even today. 

I was given 2 other less invasive treatment options and was told to go home and research it. These treatments will have a major impact on my life, mental health, physical health and sexual health!!!! Great. 

So, I left the appointment so thrilled because no chemo but so deflated because 10 years of hormone treatment. 

I did what I told myself to stop doing... I research online. I read, joined groups and participated in forums trying to grasp what hormone therapy was like. Well... there is nothing good to hear online. Lady after lady told me how bad it was to endure. I read stories of horrible reactions, life debilitating effects and loads of women just quitting. Quitting because they were so miserable. They talked about the quality of life not being worth living. Great....... I got nervous. I got downright scared. I canceled my Oncologist plan and refused to move forward. 

Well, on my next Oncology appointment I got told off. Yep, I got read up and down and was told to trust him and buck up. It’s rare that anyone “yells” at me. It’s even more rare that I don’t tell them off when they tell me to do something I don’t want to do. It was a frustrating meeting. Very frustrating. He told me I had to at least try and pick the best gun when going into a battle. Not the weakest one. He told Brent to take it easy on me because my body and mind would be going through a huge change due to this treatment. However, he told me, “you are a 39-year-old mother with cancer”. He stated we need to get me to 80 not 50. He told me stories of many of his young patients that chose to give up or take an easier path and didn’t make it. He expressed the need to fight for each day. You guys, I cried. Like most of the day cried. I was scared and to be honest I’m still scared. I just don’t know what to expect...

As of today, I have started the process and received my first shot. Oral meds will follow. The shot was painful but not awful. It’s more about the loss of my day to day functions I’m afraid of. The treatment had a three-page side effects sheet you must sign off on from joint pain, mental health issues, loss of libido, to heat flashes and beyond. 

However, as I stated when choosing a double mastectomy, I’m doing all of this for my family. To be there in the end and enjoying as much and as long as I can. 

Again, I am choosing to do the maximum treatment option with a smile ????. I am reminding myself that perspective and your own internal voice is everything. 

So, as of today, my hormone therapy has started, and I’m set for reconstruction surgery on March 26th. My ovaries will come out next year and I will be fully in medical menopause at 40. The oral meds will continue till I’m 50.

 

WHAT I HAVE LEARNED THUS FAR....

I will say this repeatedly – I often feel this has been such a gift. I have never felt so loved than during this journey. People telling you how they feel about you, hearing the impact you made in their lives or hearing how they see you as a friend and mother is truly a gift. Most people live their entire lives and don’t know how people feel about them and who really truly cares. I see each day differently. It’s all a gift. 

The last thought I want to leave you with is to know that although this was and will be a very hard time in my life. I can count the dark days on just one hand. JUST ONE HAND! I only allowed a few days of crying or just sitting in my PJs all day. The reason I tell you this isn’t because I’m a superwoman or stronger than anyone else. It’s because perspective is everything. Thinking positive and living with gratitude is.... everything. 

I choose each day to get up with my kids to get ready for school. No matter if I crawled out of bed or barely slumped in a chair. Just looking into my family’s eyes, I knew each day was a gift. I choose to smile each day because I refuse to waste a moment of my time with my family in sadness, fear, or depression. I refuse to do this. You will see a smile on my face each day. Each day. I choose to be happy every moment I get to be with you!! Please use this time in my life as a reminder to you for how to live yours...

There will be dark days in your life. You will make mistakes and struggle with decisions you either have to make or have made. But, I want you to always keep smiling. One foot in front of the other. Allow yourself only a handful of dark days. Those days are ok. Feel free to feel all the feelings you are experiencing. Then, get back up the next day, no matter if you crawl or just slump in a chair. Look into the eyes of your loved ones and tell yourself “don’t waste one day”. Positive perspectives and living with gratitude are everything. If my story and my struggles teach you one thing – know it wasn’t my strength that got me through this journey but my love for you that enabled me to push through with a smile on my face. For you are everything to me.

Forever and always. 

Love - Your Mom

 


Submitted: March 25, 2021

© Copyright 2021 JessicaKuack. All rights reserved.

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