Oh hey friends, it’s been a minute I know. I don’t want to say I’ve been hiding… but I haven’t exactly been not NOT hiding. For the longest time I thought I just didn’t want to be out in the open for everyone to watch, talk about, and judge… But I realize now, a year into my new life as a stage four cancer patient, that it was my energy all along. I simply didn’t have the energy to share, explain, respond… be out ‘there’ in any capacity.
Now, I do.
It all started when I had my cancer-discovering scans on January 3rd last year. We got the news on January 6th and our nightmare was confirmed on January 11th. I say ‘we’ and ‘our’ because my husband was experiencing it all with me. This was his nightmare too.
Then came all the scans, tests, appointments, and planning sessions… All while having countless uncomfortable and sad conversations with my family and closest friends.
After a few weeks I decided to share my news publicly on social media, because in the past that’s what I did. I always received so much incredible support from friends, clients, acquaintances, friends of friends, colleagues, people I’ve met along the way, people who heard about me, people who shared a diagnosis with me… I always ALWAYS appreciated it so much. It always helped me feel gratitude and optimism along the way. But then the devastating discoveries kept coming. Discoveries that I haven’t shared publicly yet because it was too much. Too much for me. Too much for my children, and therefore too much to share publicly.
So, I didn’t.
It wasn’t exactly the start to the year I had planned. But I’d handle it. I always handled it, and with genuine positivity. I was already talking my way through all the ways I was going to handle it with those closest to me. And how I was going to help others handle it. I knew I was in for it, but looking back now I’ll admit that I wasn’t ready for what was coming.
After ruling out a biopsy on any of my lesions (tumors) because they were too risky, we decided we’d have to start treatment with the assumption that I was dealing with the same subtype of breast cancer as before. Breast cancer is sneaky and incredibly good at mutating to different types in order to survive. The type of breast cancer dictates treatment options, and some have a lot more options than others. There are NO good breast cancers, but there was definitely a way for this to get worse for me. It wasn’t easy moving forward without knowing for sure, but time was ticking away and every day mattered.
The decision was to start with radiation treatment. It was followed by six months and twenty-something chemo treatments, along with two targeted therapies for my assumed type of breast cancer, that I also received via infusions and a bone strengthening infusion. Whenever I had to tell my doctors about my treatment regimen it was met with wide eyes and a ‘wow, that’s a lot’ comment. Let me tell you – when doctors react like that, it’s not exactly settling.
I also had multiple procedures, a couple of hospitalizations due to chemo related complications or procedure related infections… and the scans never stopped. The radiation created problems for me – the kind of problems I was assured that less than 5% of patients experienced. Lucky me, again. Which created more tests, more scans, and even more of being monitored closely.
Although I had also experienced many good signs along the way, it wasn’t until August that I got my first real break. My cancer was stable. STABLE. I remember being disappointed that it hadn’t disappeared… I had NED in my mind as the goal, which stands for no evidence of disease. But my doctors told me this was the best case scenario for me, with my specific lesions and my specific situation. They told me they won’t all go away, they’ll just stop growing and hopefully stop spreading. ‘Hopefully’… a seemingly innocent word that carries a lot of weight now.
However – I WILL TAKE IT. We were thrilled. Relieved. Exhausted. Nervous of course…. But we’re absolutely ok with it. I was given the go ahead to go off of chemo for now, and continue with the targeted and bone therapies every 3 weeks as my maintenance treatment regimen. I was to have 4 different scans every three months – a different one every month, to make sure nothing would be missed. I felt like I could take a breath for the first time in a while… until I was told the first 6-12 months after chemo would be the most telling. I didn’t understand. I was stable, wasn’t this good? The vibe I was getting from my doctor wasn’t what I expected.
It was good. Of course. But now it’s a matter of when my disease progresses. Not if, but when. Trust me, there was no ‘if’ anywhere to be found in her statement…. I know because I desperately searched for that word from my doctor. The way I always search for keywords, phrases and tone in all of my appointments.
There are always two conversations happening in my appointments – the one being said out loud, and the one that isn’t.
If my cancer progresses in the first 6 months then we’re likely dealing with a new type of breast cancer (or multiple types) and it would be considered extremely aggressive. At that point a biopsy would be necessary and treatment changes would have to be made. If I made it to a year with no new progression, then it’s a sign that I’ll probably get to a few years on my current line of treatment.
Ok, so I guess I don’t get to breathe just yet. Will I ever get to breathe again?
Currently, I’m breathing. I’ve had multiple scans since the summer and so far so good. I’m stable. I’ve held stable for 6 months, and I’m optimistic that I’ll continue to hold stable for a long time. I have monumental scans next month – and even though I don’t have any specific reasons to be worried, there will always be anxiety. Scanxiety. Every time I go in there I remember how easy it is to have your whole world turned upside down, again and again. Just like that.
It’s amazing how dependent I am on pure luck. LUCK. Because you can do everything right, and still have a cancer recurrence or progression. You can do everything wrong and stay stable or become NED, or be considered a survivor. What right and wrong even mean have always been up for debate too. Who even knows. All we can do is the best we can, with the knowledge and resources we have.
For now, there it is. The story.
This story is lacking in a million details, but it’s simply impossible to get to it all in one written piece. So here is the start, the start of me getting my story out there, the beginning of beginning again. I have so much to say because I’ve learned so much this past year. There is so much that I believe is too important to keep to myself. I want to talk about perspective, toxic positivity, positivity, depression, anxiety, my prognosis, statistics, advocacy, breast implant illness, narcotics, stage four-ness, breast cancer awareness (true awareness), radical remission, palliative care, surgeries, treatment details, parenting, tough conversations, taking up hobbies, exercise, meditation, priorities, travel, how I feel, career, what’s next….
And be hilariously charming in the process – of course.