Many of you have told me to write my story so I've finally decided to take the time to sit down and write. The unfortunate reality is 1 in 8 women will get breast cancer. This most likely means that every single one of us will know someone affected by breast cancer at some point in our lives. Fear of the unknown is one of the hardest parts of getting a cancer diagnosis. As a nurse I am around cancer all the time. I know what cancer is. I know the treatment for cancer. I've watched people die from cancer. I've watched people beat cancer. Trust me though when the tables are turned it is an entirely different story. I have a lot of medical knowledge and that certainly helped me through the decision making process, but it was only through another survivor that I really learned what to expect and how to prepare for what I was about to undergo. She validated my feelings and helped me through some of the scariest moments of my life. For Wendy, I am incredibly grateful. I can only hope that someday I can help someone the way Wendy helped me. My hope is that at least one person can benefit in some way from hearing what I went through. Even though there are scary and painful parts to my story, it helps to know you're not alone. Nobody wants cancer but if you're lucky enough to survive you feel this desire to help others that may be about to undergo this life changing experience, the thing that makes them realize their mortality. At least I do.
So here is my story...
"I think it's Cancer"
Sometime in April I was doing a breast self-exam and noticed a lump in my right breast. Yes, I was actually doing a self-exam! The lump felt hard, like a marble and wasn't at all sensitive to touch. I couldn't feel the back of it and my immediate thought was "f*ck, this isn't good." ICU nurses tend to think worst case scenario about everything but beyond that something in my gut just told me it wasn't good. I quickly called two of my closest nursing friends and said "I need you guys to feel my boobs." Hormones. Everyone kept saying it was probably hormonal and as much as I wanted to believe that and be the optimist, I quickly became the realist instead. I began researching everything there was to know about breast cancer, I mean everything!!! Like I said before something in my gut told me I had it so I went with that feeling. If I was wrong I would celebrate and blame the hypochondriac nurse in me, but if I was right at least I would be prepared. I told very few people until I could make an appointment to see my primary doctor and get the necessary ultrasound and mammogram that would be needed to make a diagnosis. After the suspicious ultrasound and the even more suspicious mammogram I was sent for a biopsy. While waiting out the days for my biopsy I called for and received my actual mammogram results in the mail. A quick note about that- if you want your actual reports and results you need to follow-up with your physician and ask for them. I was told I had an abnormal result and I needed a follow up biopsy. Period. Well what did that actually mean? I wanted to see the doctor's notes and his impression on the report. Sure enough after receiving that report I read the words "BI-RADS CATEGORY 5. This is the highest category before an actual known cancer and is highly suggestive of malignancy. It was at this point that I called my husband at work and over the phone through tears I said "I have cancer babe. I have cancer." It was around this time that I started walking around and saying in my head "I have cancer… I have cancer…" If I said it enough maybe I'd start to believe it. I had the core needle biopsy about a week later. This involves a long needle inserted into the breast to sample tissue from the "core" of the mass/lump. This would give us some preliminary information as to grade, type and size of the tumor, as well as hormone receptor status if it was indeed cancer. The doctor that did my procedure was amazing. He treated me like a nurse, not a patient and although I was indeed the patient there was something extremely comforting in that. I told him to be straight with me and he did. He said "I hope I am wrong, but I'm worried about you" Damn. I felt that way too.
"It is CANCER"
5/12/15- I'll never forget when I received that call. I was having happy hour on my deck with two of my best friends, Rachel & Caden and my husband, Jeremy. We had been expecting a call at some point that evening. I remember hearing the words "I'm sorry you have cancer." Then I heard something about Invasive Ductal Carcinoma and the rest was a blur. My husband came upstairs to see my reaction while I was on the phone. We had a brief blank moment to hug on the bed and hear the words in our own heads. I stumbled down my steps and looked at my friends and I remember nodding my head, gasping for my breath and barely whispering "I have it. I have it." It was like I couldn't say the word cancer. I finally said "I have cancer." I had known all along, but somehow actually saying the words put me in an almost shock-like state but then quickly I went into nurse mode… fight mode. I was determined to find out everything there was to know about Invasive Ductal Carcinoma… statistics, research studies, treatments, you name it I was researching it. Invasive Ductal Carcinoma just sounds terrifying… Invasive? How invasive? What did that even mean? I was scared but I am a fighter. I was going to fight this thing and I was going to do it with the strongest and most positive mental attitude possible.
Ok… I have cancer. Now what?!?
The next stage involved the prep work. I had appointments and lots of them. Meetings with surgeons, oncologists, genetic consulars, etc. etc. Lots of co-pays. There were so many decisions to be made based on a lot on unknowns. What surgery would I have? When will I go back to work? Will I need chemo? Who do I want to be my oncologist? My surgeon? Where am I going to have surgery? How much will all this cost? Has the cancer spread? The list goes on and on… So many questions running through my head. After a few days of appointments I thought I had at least decided on my surgery team, as surgery would be my first step. The problem with my team was they couldn't operate on me for close to two months. Seems like a long time to wait when you're sitting with a cancerous lump in your breast. I had no idea how fast this thing was spreading or where it even was at this point. I liked the surgeons but this was my health we were talking about. I'm 35 years old I kept thinking… I'm only 35. I'm not ready to die.
My husband, my good friend Delmy and I were down at the beach in OB one morning and ran into our friend Jesse as he was getting out of the water. Jesse happens to also be an anesthesiologist. He said if I didn't want to wait and I was open to a different surgery team we could get things rolling sooner. That sounded perfect to me! After a few phone calls and meetings that is exactly what we did. I remember the days leading up to my surgery. They were stressful and it felt like things were happening so fast. I had this overwhelming feeling of needing to get my affairs in order. I made my first advance directive and discussed my wishes with my husband. We had talked about this stuff before but shit just got real really fast and I needed to be sure if something happened to me he had no doubts as to the decisions he would have to make. It seemed like everyday there was some kind of form or paper to fill out. Disability paperwork and referrals that were coming through like crazy, consents, etc. etc.
Surgery… Double mastectomy with Reconstruction and Lymph Node Dissection
5/27/15- Exactly 10 days after my conversation with Jesse on the beach I was in the operating room, prepped and ready for what would be the most difficult phase of my life to date. I was getting a double mastectomy with reconstruction plus a lymph node dissection. Jesse would be my anesthesiologist and I had a team of really good surgeons behind me. I actually felt excited. I was so ready to get that thing out of my body. My surgery took about 4-5 hours and the preliminarily pathology on my lymph nodes came back negative. I had 9 lymph nodes removed. We would still have to wait another week to find out the final reading on the pathology. I remember feeling pretty happy when I came out of surgery. I was on a continuos pain pump and still had some sedation on board (most likely the reason for my happy state). I remember the first time I looked down at my chest. I expected to see something out of a horror film. I had looked at so many pictures of women who had had double mastectomies and those pictures did nothing to ease my anxiety. Instead when I looked down at my chest I thought "Wow my surgeons are badass. They did such an amazing job!" I thought "this doesn't even look bad" I had minimal bruising and with the expanders inflated a bit I still had what appeared to be small breast mounds. I was in some weird way proud of what I had just went through. If you came to visit me during those first weeks and you weren't terrified to look at me I was more than happy to show you. Sure I didn't have a nipple on one side and I had a couple decent size incisions but the cancer was gone!!! THE CANCER WAS GONE!!! That first night in the hospital I of course had pain and I battled some nausea and vomiting. Unfortunately, I don't think my body did too well with the sedation. Overall though I'd have to say my night wasn't too bad. I was so grateful to have my husband by my side the whole time. The room was prepared for him when I arrived from the OR and he was able to sleep on the couch next to me the entire night. The following day (post op day 1) I was pleasantly surprised when my good friend Rose showed up in my room. She was going to be my nurse that day!! How awesome is that?! After teaching my husband how to empty the drains at home and me proving I could walk a couple laps around the medical/surgical floor it was time to go home! I was still having pain and had those bulb drains hanging beautifully out of my armpits, but I was so ready to go!!
Road to recovery
Surgery was tough but nothing compared to recovery and the days and nights that followed at home. Right from the start coming home from the hospital there was a delay in me getting my pain medicine. Things seemed to just spiral from there. That first night was a tough one. We questioned whether I should have spent one more day in the hospital, but thankfully with the help of my loving husband I got through it. I wasn't supposed to lift my arms above my shoulders or use my arms to push myself up from a seated or lying position. Basically I couldn't use my arms. I was told that my chest would feel heavy for awhile. Heavy equaled pain. It felt like I got shot in the chest. The pain was a sharp, burning sensation that radiated down my right arm where I had lost the lymph nodes. It was nerve pain from all the nerves that had been severed during surgery. Besides the nerve pain I also had incisional pain and quite a bit of pain where the two drains exited my armpits. We developed a system of setting an alarm so I wouldn't miss my pain meds. This helped prevent any lags in the pain medication which helped limit times of uncontrolled pain. I also had clear bandages that covered my entire chest that I couldn't get wet. Meaning no showers. I had drains that needed to be emptied every few hours and I could only lay flat on my back or sit up in a chair. My butt and lower back would literally hurt from sitting for hours. Sleeping for me was nearly impossible. The first night I slept in a chair with ice bags all around me. Any movement that involved using my chest muscles hurt. You'd be surprised by the amount of things that require you to use your chest muscles. I couldn't even open the top of a pill bottle for the first couple weeks. I wasn't allowed to lift anything heavier than a phone book. I wasn't allowed to drive. I was told to pick two butt wipers and I did, but thankfully I didn't need either of them! I couldn't hug or pick up my little pup and I was so terrified that he would jump on me and hurt me. It was so hard not to be able to hold and hug him. He sleeps with me every night and I had to sleep with pillows on my chest so he wouldn't try to lay on me. As an incredibly independent person this was a tough time for me. I needed help with everything. I am so blessed that I had my husband, my in-laws, my mom and some really great friends available to me those first few weeks. Collaboratively they gave me sponge baths and washed my hair, they dressed me, cooked my every meal, brought me gifts, drove me to my doctor appointments, sometimes they just visited and kept me company. Some just let me cry. My husband helped me through my sleepless nights, those filled with pain and anxiety. When I woke up in excruciating pain he would be there to reposition me, massage my shoulders, lift me out of bed to go to the bathroom (something I couldn't do on my own) and get me my pain medicine. Never once did he complain. He never showed how tired he was and never once did I question his ability to help me handle what life had thrown at us. I had long distance friends and family that were there to offer support and encouragement. I'm thankful for each and every one of them. They'll never know how much they truly helped my recovery, but they did and I am forever grateful.
The next steps… (expanders and more waiting)
When you get cancer you need to be prepared for a lot of waiting, but preparing yourself is nearly impossible. You want answers and you want them now. Unfortunately it doesn't work that way. It seemed like for the first couple months I did a lot of waiting. Mostly waiting for test results. This test and that test. I waited for pathology results, PET scan results, BRCA testing results, Oncotype results, this list goes on… These were some huge test results I was waiting on and some of them (BRCA and Oncotype tests) took close to 3 weeks to come back! That is a long time for any test but for the ones that will tell you if you are going to undergo chemotherapy and the one that tells you if you have the BRCA gene for ovarian and breast cancer this is an insanely long time. I've never had anxiety the way I did during those weeks of waiting. I barely slept and although I occupied my days the what if's were always there in the back of my mind. I finally got my Oncotype results- I had a low recurrence score and I opted to not receive chemotherapy!! According to this test the risks of chemotherapy outweighed the benefits. Around the same time I also received by genetic testing results. I was BRCA negative so my ovaries would be spared! Such a happy day that was!!!
In between waiting for test results I was also going through the expansion process. Expanders are necessary to expand the area where the permanent implant will go. They are placed under the chest muscle and slowly expand your skin and muscle over time. Nothing you will ever read about expanders can actually prepare you for what these miserable little things feel like. About every two weeks I would go to visit my plastic surgeon and he would inject anywhere from 35-50 ml of fluid into the expander. The expanders have a one way valve and a needle is inserted into the top of each breast and saline is slowly injected into them. The pain is different for all women. I am small and really fit with not a lot of room for expansion so unfortunately for me this process was extremely painful. I began to dread Tuesdays because those were the days when I would have the expansions done. Some days after an expansion I wouldn't be able to leave the couch. Other days the pain wouldn't be as bad but I never had a pain free Tuesday after my visit with Dr. Halls. Not only were they painful and hard, but they looked like alien boobs. They were boxy and extended into my armpits and they looked huge on my small frame body. I was thankful I only had to keep them for two months. I was able to get them out and have the permanent implants placed on the 27th of July! Another surgery but oh so worth it!!
Hormone Therapy and Tamoxifen
There were decisions to be made as to what type of therapy I would pursue now that we knew I wouldn't be getting chemotherapy or radiation. I read literature and did my research for a couple weeks, always showing up to my oncologist's office with at least one new study on this or that. Ultimately I decided on Tamoxifen. Hormone therapy is no walk in the park but on the days that I have side effects I remind myself that things could be a lot worse. I could have a metastatic cancer or a cancer that didn't respond to hormone therapy. I could be going through chemo and radiation right now. Instead of being bummed about the side effects I remind myself how lucky I am. I am alive. I get to live!! Cancer has changed my life. I look at the world through a different set of eyes. I'm emotional now. I actually cry, something I rarely did before. I think it's because I am actually feeling things now. I am present. Fully present in this crazy beautiful thing we call life. In a way I am thankful I got cancer. Do I miss my nipple? Do I miss having full sensation in my chest? Miss my tiny but natural boobs? Sure. I absolutely do. But now I think of those things as a small sacrifice for my life. An experience that I am grateful for and one that I wouldn't ever change.
Moving On…
It has been a little over 4 months since my diagnosis and my life is slowly starting to feel like my life again. I am in remission. I am back in the water surfing again. (Not being able to surf was one of the hardest things for me during this whole process). I just started doing pilates again which also feels SO good! I will have an MRI and bloodwork done in November and if those things look good we will trend yearly MRI's. Tamoxifen will be a part of my life for at least 5 years. I am also returning to work next week! I miss being a nurse and miss my co-workers so much!
Throughout this process I've learned that it is important to allow yourself to grieve. I allowed myself to be sad throughout each stage, each new change to my body. I think grieving is an important part of the process and with grievance comes acceptance. I've also learned there is strength in vulnerability. "What doesn't kill you makes you stronger," right?!
Photo by Delmy Gooch/DGaray Magazine
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