Bring on THE plan…

No matter how much trust you have placed in a certain individual, it is a precarious place to find yourself facing the person who holds your fate in their hands.

I knew better than to go into this appointment alone. Going over my biopsy results report and toiling over my treatment plan was going to require the assistance of a level-headed person, to lend an ear and take notes for me. My Dad is the best person for this job, though I didn’t want to ask any of my family to come with me because they all had their own obligations. Graciously, one of my closest friends of 23 years insisted on being there with me.

The good, the bad, and the ugly.

Receiving all of the information that my breast oncologist had for me that morning, all at once, was beyond my capacity for normal retention. I had to categorize what I was taking in.  Hence… the good… the bad… and… the ugly.

The good things I heard from her included:

• the fact that I do not carry the BRCA gene mutations
• that of all of the breast cancers to get, I picked a good one, a friendlier one
• that there was nothing I could have done differently to prevent this cancer (other than choosing different parents)
• she felt that it was very treatable and that we found it just at the right time

Now the bad things I heard:

• my official type of cancer was Invasive Ductal Carcinoma, ER+/PR+, HER2-
• there were 2 known tumors, with the possibility there could be more
• one of the tumors was close to the skin just under the nipple
• there were questions that wouldn’t have answers until they removed some lymph nodes, and those answers may change the treatment plan

Speaking of which, let’s get to that now. My doctor was amazing at going over all of this technical, earth shattering information in a very real, and compassionate way. She clearly explained to me that the way I have chosen to live my lifestyle had nothing to do with me developing this cancer. That it was simply in my DNA. As I pressed her further with questions regarding that, she finally conceded to believing that my clean, healthy, and very active lifestyle may have only delayed the growth of the cancer by 2 to 3 years, but that was all. She stated that I would have gotten it and at a younger age, no matter what I did.  She understood who I was, and she understood that making these decisions was not a new concept for me, although that fact only made the whole thing slightly easier for me. My doctor and I discussed the treatment choices my mother had made when she was diagnosed at 41, and how her outcome was effected by those choices. My mother had started with a lumpectomy and radiation therapy, then ended up with a mastectomy and maxing out her lifetime radiation limit, over the many years of dealing with her cancer re-occurrences and multiple procedures for treatment. From this example, I had known for most of my life that I was not going to take the same route my mother took. My doctor understood this, and thankfully, was not even considering any of those options for me. I also told her about my mom (stepmom) and all of the treatments she had received for her breast cancer, including a single mastectomy and a sizable course of chemotherapy. Basically, these two women in my lifetime had made two very different decisions on how they chose to treat the cancers they had, and learning from both of them I had a pretty strong stance on what I wanted to do. Fortunately, my doctor was on the same page.

Essentially the “plan” for me, was going to include having a Bilateral (or Double) Mastectomy, including the removal of my left nipple, removal and dissection of sentinel lymph nodes on the left side of my body, and dependent on those results, my follow up treatment would be 10 years of taking Tamoxifen. She, of course, explained why there weren’t very many options for treating my case, mainly because of my age and family history. Even at 43 years old, my tests indicated that I was nowhere near menopause, my hormone levels were similar to those of women in their 20’s and so I was only given one option for follow-up drug therapy. And regarding my family history, given the circumstances of my mother’s re-occurrences of her cancer and the instances of breast cancer in other close family members, I was considered to be at higher risk for both my breasts developing cancer, which is rare.  She also detailed for me as to why this particular cancer was more treatable than others. This type of cancer tends to grow slowly, and it loves estrogen and progesterone, these qualities make it easier to remove when it is found in an early stage, and also allows for the follow-up drug therapy to have a greater chance at preventing its return. My doctor really spent a great deal of time with me. She really helped me to feel very lucky that these were the circumstances.  I was very VERY fortunate to be going into a relatively easy treatment plan.

As for the ugly things I heard that day:

• they would be removing all of my breast tissue
• they could not save my left nipple
• they wanted to have the surgery within 4 weeks because they were worried about the cancer’s proximity to my skin
• that most likely I would have a complete loss of sensation in my breasts (or rather, the skin that was remaining)
• that if they found the cancer cells in my lymph nodes during surgery, it would change our treatment plan significantly
• or if they could not obtain clear margins during the removal of my breast tissue, that would significantly change my treatment plan as well

Now, you may be wondering… why do I categorize these things as “ugly”?            After all, I had been told that this cancer in my body was very treatable and “friendly”. Well… I have spent a great deal of time battling my mind and my feelings on this, reconciling the thought that I should just keep my mouth shut and be grateful that I was getting away with it all pretty easily.

I have thought about it A LOT!  I AM extremely grateful, that’s for certain. Though, throughout my recovery I have given myself permission to feel whatever feelings I have about this entire journey, and to me, the ugly was hearing the raw reality, the sacrifices, and the unknown. I think it is fairly easy to understand that the unknown is a scary thing, especially when there was some extremely important information waiting to be revealed during my surgery. It came down to accepting the fact that I would be waking up after surgery to find out whether or not the cancer was worse than expected, and whether or not we could continue with treatment and reconstruction.

As for the raw reality of the whole thing and the sacrifices I would be making, all I can say for sure is that at that point in time, I had no idea of just how great those sacrifices would be. There were a few things said in that meeting with my doctor that literally took my breath away, and understanding the physical effects of having my breasts removed was a major one of them. Allow me to elaborate…

I wholehearted agreed that I wanted them gone, in order to save my life and have the best chance at preventing recurrence in the future, but… BUT, I really liked my boobs. I had really nice breasts, and I loved them. Yes, they were a part of me that I happened to be very attached to. Yes, I had breastfed all 3 of my children with them. And yes, they were a huge part of my sexuality. To be brutally honest, I loved how my natural breasts looked and I enjoyed how they felt, and I had an extremely hard time coming to terms with the reality of what it meant physically for me, to have them removed. There were aspects of having my own natural breasts that I did not wish to give up, but that is the nature of making sacrifices, you usually don’t want to make them. I simply had no other choice. There was no doubt, obviously my life was far more important.

Following this decision on my treatment, I was on the fast track to surgery. Since my breast oncologist wanted to move quickly she was already putting together my team of doctors, and referred me to several plastic/reconstructive surgeons to go have interviews with. By the end of the day I had the entire next week of my calendar filled with appointments to interview the other surgeons, and instructions to call her on her cell phone as soon as I had chosen one of them. This was just the beginning of where my career as being a Sports Medicine Massage Therapist was quickly being replaced by the new full time job of coordinating my health care.

It is odd that I don’t really remember what transpired for the 4 days after that meeting.

What I do recall includes, knowing that I sat down with my parents and they were a little surprised at what my treatment plan was going to be, and shocked at how quickly the doctors were moving to implement it. My daughter had come down to stay with me and attend the surgeon interviews with me. I held a meeting at my office to tell them of my diagnosis and to make arrangements for taking a year off from working. I carefully selected a limited number of resources to research this path I was now on. And honestly, I must have been on a bit of an auto-pilot setting, not really participating in what was happening yet I was taking care of the business of rearranging my life, and telling the very few people on an absolute need-to-know basis. By the next week, as Kristina and I were interviewing reconstructive surgeons, I finished up informing the need-to-know people through a few phone calls, and with a lengthy email to my sons’ father. The meetings with the prospective reconstructive surgeons were very educational, and ranged from totally amazing to surprisingly disappointing. (I will be explaining that in more detail in my next post.) The conclusion to those days was making a connection with an incredible human being that infused me with hope and positivity. I found the doctor who would be walking this path with me side by side, and she gave me my first glimpse of how “the good, the bad, and the ugly” would one day be turned into all GOOD.

To say that it was all so surreal is an understatement. Having all of those conversations with loved ones and doctors was like having an out-of-body experience. And, as I sit here right now typing… I feel like I was a different person back then, not at all who I am now.  And maybe that is true.

Actually… I know that is true.

Love & wellness, Heidi XOXO

P.S.

Over the past year I have been feeling a very strong push to share my thoughts and knowledge with everyone, in the hopes that I can be of some help to them. This is my personal story and within it are my own opinions. Whether it is in the capacity of being supportive and comforting, or providing honest and real answers to questions, or just sharing advice. My goal is to make myself available for anyone who has a need or is interested, and to share in other people’s journeys. I am happy to share information or photos of my progress, connect with me and I will do whatever I can. Just as within my business, I genuinely want to be of benefit to people’s lives. When I found myself suddenly thrown into researching my cancer diagnosis I was truly shocked at how little there was of real and down-to-earth information out there in the world. I mean come on… how could there be so little positive or relatable information, it was 2016 for goodness sake! And don’t get me started on the images. Yikes!  So, now I have high hopes of being a part of other people’s progress, and I look forward to continuing this story of my journey. I do not give medical advice, but I can tell you what I have done for myself and guide you to find what could be right for you. *Please subscribe so I can let you know when I post, and thanks so much for reading!