Hi Friends! I’m alive! I sincerely apologize for the delay in my update. I just haven’t been up to blogging (until now) from a physical or emotional standpoint. I needed a little time to process all the changes that have happened recently. But I’m back!
(above- my first pic post surgery!)
First, I’ll (try) to cut to the chase regarding the most common questions I’ve been asked from friends and family. I was able to have the double mastectomy surgery as planned on January 11, 2019. I did not get the surgical pathology results from the breast tumor until January 18, 2019. I was hesitant to share any news (at first) via blog or social media because during this process, I’ve noticed that medical “news” usually evolves and more information is revealed within the following week or two. Then, if the news is contradictory, I find myself “un-telling” friends and family the aforementioned “news”, which can be a little disappointing for everyone. Please do not interpret that statement as me being un-grateful that people are interested. I’m so humbled and thankful every single day for the people that read this blog, pray for me, and support me. I just TRY not to put everyone on an emotional roller coaster (well, as much as possible) 😉
During the double mastectomy (which removes both breasts), the surgeon removed all of my breast tissue but kept my breast tumor together “as a package” and sent it to the lab for testing. At the time of surgery however, the surgeon removed two of my lymph nodes and those were tested at the time of surgery (I think the reason is to determine if they need to remove more lymph nodes if cancer is found). According to the path report, the make-up of my breast tumor was 50-60% scar tissue…. which is positive news! They did find 2.5cm of “active cancer” remaining in the tumor, BUT the “cell division” rate of that cancer was less than 5%, which is more good news! From what I understand, cancer cells can be dividing rapidly (100% rate) or slowly like mine were (less than 5%). I’ll take that, and A-MEN. Thank you Lord!
The concerning part of the path results for my medical oncologist was that they found 3.2mm of active cancer in one lymph node. I didn’t understand why it was concerning at first, but I’ll relay the general idea of how it was explained to me. Because they found active cancer in one of my lymph nodes during surgery and because there was metastasis to other places in my body at some point in time, the cancer in one lymph node COULD mean that there are microscopic metastatic cancer cells just floating around my body ……and apparently they could just pop up anywhere….oh, lovely! 😉 (Common places of reoccurrence are lungs, lymph nodes, liver, etc.). So, we needed a plan to make those microscopic cells “dormant”….hopefully forever! (More on the “plan” later). My first reaction to this news was “but my PET scans have been clear everywhere but the breast tumor, why didn’t the PET scan light up in that lymph node?” Well, for cancer to “light up” on a PET scan, it has to be a certain size (I think about an inch) and the cancer they found in my lymph node was too small to be picked up on a PET scan. I don’t love the idea that there can be small amounts of cancer in my body, yet they are not detectable on a test/PET/etc. However, I think that is where faith comes in. We can’t expect to know and see everything ourselves. I trust God’s plan for my life and the timing of whatever is in store. Admittedly, that is hard to do at times because it’s a scary thought. Which is why (for me) it’s more important than ever just to pray and recognize when I’m feeling scared and just hand things over to God. I really do try to have a positive attitude because I genuinely believe that it DOES help physically and emotionally. But, I’m not always perfect in that aspect either. My sweet husband and mom were there with me during/after surgery and they’ve let me cry when I felt like it over the last couple of weeks just from physical pain, frustration, …..or simply being afraid. Uncertainty doesn’t feel wonderful….but I AM certain about my faith AND God’s plan for my life.
(Side note- I’ve said this before, but I hope my blog can help someone one day (and keep my friends and family up to date), but I never want to “push” my beliefs on anyone else. This is my blog so naturally, I discuss my ideas and experiences. But, everyone has the absolute right to whatever belief system that is important to them.)
So, where do we go from here? The plan going forward (as of right now) is me to heal from this surgery before radiation (and oh boy, more on surgery later….what an “opportunity” for personal growth that was!). Currently, I’ve been going through a series of “expansions”. When they removed my breast tissue they put empty sacks (“tissue expanders”) under the muscle in my chest so they can gradually expand/stretch the skin- yes, that’s as comfortable as is sounds! 😉 (Radiation causes your skin to shrink so they want to “over-expand” at this stage). I’ve had 2 of 4 expansions as of today. My last expansion should be around February 15th (hopefully), then I can start the “mapping” process for radiation. I don’t know exactly when radiation will start- perhaps at the end of February but that all depends on how my skin and body is healing from surgery. (It might take me longer than others to heal since I’m coming straight off 17 rounds of chemo). There are people that have elective double mastectomy’s that bounce back a little faster (or maybe someone who did not need chemo might bounce back faster)- each person’s healing time is different depending on their circumstances. My breast reconstruction surgery will not happen until about 9 months after I finish radiation.
So, we’re looking at 6.5 weeks of targeted radiation (radiation cleans up the tiny cancer cells chemo left behind) and then after radiation, six months of a chemo pill (the chemo pill will hopefully make any microscopic cancer cells floating around in my body “dormant” if there are any). The chemo pill I’ll be taking is pretty common (Xeloda). The good news is that for now, NO MORE IV CHEMO! A-MEN. Also- more good news- no more Zometa infusions! (Zometa is a bone strengthener for bone mets that made me pretty sick). Studies show that at this point, the Zometa only helps post-menopausal women- and my bones do not fit into that category. I was even given the go ahead to remove my chemo port with the understanding it might have to be put back in one day. Removing the chemo port is SUCH a huge milestone for me emotionally because of what it represents. At one point in time, I was told I might be on IV chemo for the rest of my life. But, I’m choosing to think that we are going to remove this chemo port and it will stay gone! (I would love prayers for that, specifically! Please and thanks!)
On the chemo pill, I should not lose my hair/lashes/eye-brows, which makes me pretty excited! There are definitely other side effects of the chemo pill we will have to keep an eye on and they may not be ideal…but truthfully, I’m not in a place emotionally where I feel like discussing the “what ifs”. I’ll deal with those side effects (and of course share my experience) if that time comes. I’m hoping and praying for radiation AND the chemo pill to go smoothly. I do know that radiation fatigue is cumulative (that’s a fact, not a what if- so I’m prepared for that). So to sum it up the plan is: (1) expand breast tissue (2) heal from surgery (3) six and a half weeks of radiation (4) six months of a chemo. (Technically, I will be on the chemo pill for the first 3 weeks of radiation and overlap the two, then stop taking the chemo pill, then start taking the pill again once radiation is over-if you really want the full details).
Moving on to another question I’ve been asked a lot: “will the cancer come back?” Since the VERY early days of my diagnosis, I have only asked the question “what are my odds of survival” ONCE and that was in May of 2018. The doctor at the time asked me if I was ready to hear that news and I said yes (for the record, I was NOT ready which is my own fault). I’m choosing not to share those odds in print because first, they were so dismal and second, because everyone is different. If there is someone with Stage IV TNBC reading this, I don’t want my blog to be a source of trauma. TNBC (triple negative breast cancer) is a tough because they don’t know what’s “driving” or causing the cancer. Most breast cancer, (around 75%) is driven/caused by hormones so the doctors know more about it. Since I have TNBC, I try not to cling to statistics too much since TNBC seems so different than other kinds of breast cancer.
I did work up the courage on January 18th to ask one of my medical oncologists about the odds of this cancer coming back. I told her “I don’t take this as a promise, but given my age, health, stubbornness, and everything you’ve learned about me over the last 8 months- what do YOU think the odds are that this is coming back?” I’m so happy to report that her answer was MUCH better than I expected and MUCH better than my original odds! When we heard that news, I cried, Mark cried…..lots of happy tears because our expectations had been set so low from those early days of my diagnosis. Of course I’d love to be one of those women where I only have a 5% or 10% chance of a relapse/reoccurrence after my chemo and surgery, but I’m not at those odds (not yet) and that’s okay. If I make it to 3 years, 5 years, and 8 years (without any cancer reoccurrence) I CAN get to those numbers! The chance of a “relapse” decreases over time. I just found out that your “cancer-anniversary” begins the day you start chemo, so we will be happy when May 31, 2021 gets here! With that being said, Mark and I are choosing to live like I WILL be in that percentage where the cancer does NOT come back. We have every reason to believe that will be the case. I mean, God tells us not to worry about tomorrow …….and my amazing oncologists and doctors are telling me the same thing….so I think I’ll take that advice. I know it’s so hard and scary trying not to worry about a relapse- and I’m not minimizing that for anyone. Trust me- I get it. But, I just tell myself- TODAY I am here, I am HAPPY, I am LUCKY.
That would have been a great place to end the blog, right?……but I didn’t talk about the actual surgery itself. Woops. I was surprised when my doctor reminded me on Friday that my surgery was just two weeks ago (I kept asking him when I could start doing cardio again….he was very adamant that I wait 6 weeks at LEAST and to start slow). It feels like it has been months since my surgery and it was not what I expected. The surgery was tough and painful, I’ll admit it. BUT, adversity gives us a chance just to be stronger, right? I have so much to say and just realized it’s 9pm and I need to get some rest. But, I’ll do a separate blog post soon on my surgery experience and link to some products and things that helped me get through it (no, I am not getting paid for product links- and I am not selling anything) I’ll also and share a few mistakes I made along the way that might help someone else during their surgery experience. Live and learn right?!
In other news, below is the link to a commercial Mark and I filmed for Woman’s Hospital/Mary Bird Perkins. We shot the commercial the day before my last chemotherapy treatment on December 12, 2018. It’s surreal to realize how far we’ve come since May 2018.
Also- a few things from this week that made me smile (pics below).
(pic above, lesson: never under estimate how much your family loves you…or how slow the postal service can be) 🙂
(pic above, lesson: never under estimate how much kindness there actually is in the world)
(pic above, lesson: never under estimate how willing your friends are to step in and help at a moment’s notice)
As always, thank you for the constant support, prayers, and love. We ARE moving in the right direction. Things are looking up.
-Holly Hollis Stars-