022: Cancerversaries... do we really want to celebrate this?

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Let's talk about cancerversaries... what the heck are they? When are they? Why are they? This year, Tammey celebrates her sixth rotation around the sun since hearing the words, "You have cancer and a lot of it." and she talks with us about how her acknowledgment of her cancerversary has changed over the years, which day she chooses to celebrate, the 5-year milestones tossed out when doctors discuss recurrence rates, and about the unique longer recurrence pattern of infiltrating lobular carcinoma.

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Transcript

Tammey Grable-Woodford

Hello and welcome to Your Killer Life, a podcast where we talk about the really real realities of a killer diagnosis like breast cancer and how we can use that as a catalyst for building our killer life. I’m your host, Tammey Grable-Woodford, and on today’s episode, we are going to be talking about cancerversaries because I just had one, and I don’t know, it got me thinking. So we’re going to talk about what the heck a cancerversary is and when you’re supposed to celebrate it, if that’s such a thing, if you can have more than one and kind of how I have celebrated mine as I’ve gone through the years.

But before we get to that, I want to say a special thank you and give a shout-out and some recognition to the Male Breast Cancer Coalition, who sent me an amazing T-shirt and hat. And I’m so proud to wear it on the air because anything I can do to help raise awareness for our brothers who have been diagnosed with breast cancer. I’m all about it, so if you didn’t know men have breasts too, so check yourself, guys. All right.

And I also want to thank our sponsor for this episode, and she has been helping us keep the microphones on. And I appreciate her so much. She’s also a past guest and a fellow survivor, Suzanna Davis, with RakasaFit. She created the RakasaFit workout. Oh, my goodness. And it is amazing. So if you haven’t had a chance to listen to it, give episode 18 a listen. And oh, my goodness, Suzanna is helping people all over the world reconnect with fitness and with their bodies through belly dance.

So. Oh, and if you want to support the show, you can always buy me a cup of coffee links on all of those things, including the Male Breast Cancer Coalition down below.

All right. This time each year. The anniversary of my diagnosis rolls around or my cancerversary, as we call it, in cancerland, and this year was a big one as I celebrated my sixth rotation around the sun since hearing those words. You have cancer and a lot of it.

In cancer land, we’re given milestones, perhaps you were given the same milestones, and they’re in these five-year blocks, right? Where I remember being told if, ...If... If you make it five years, that’s great, the chance of recurrence is reduced, and if you make it ten years, even better, the chance of recurrence is reduced even further if you make it 15 years. Fantastic. You’re pretty much in the clear and, I don’t know. I remember sitting there and the “if” part resonating with me and, well, at my six-year cancerversary, it initially sounds like a pretty big deal, but I don’t know. Is it?

We’ll come back to that. So what is a cancerversary? I know we have a lot of listeners who are newly diagnosed; we have a lot of caregivers who are listeners, which I absolutely love. And so let’s talk about cancerversary and how we know what day it is, because when I first heard the term cancerversary, I was like, when is this? Is it the day that I was first diagnosed, and I first heard the words?

Is it the day of my first treatment? Is it the day of my last treatment? If so, what treatment is it that we’re talking about? Is it when my imaging comes back clear, is it when they, the radiologist says they don’t see anything? Is it the day that the oncologist considers me NEAD, which in cancer speak is no evidence of active disease? When the heck is it? And then I also had the question. Some of those things I don’t know if I want to celebrate. Hmm...

Well, the National Coalition for Cancer Survivorship says a cancerversary is a milestone defined by you. Well, I like that. And it says it might be the day that a loved one was diagnosed. It might be your last day of treatment. It might be several important dates that occur throughout someone’s cancer journey, whether it’s a date that you celebrate or a time to simply reflect. Cancerversary is all about survivorship, living with, through, and beyond cancer.

OK, so I get to choose my cancerversary. So the date that I chose was the date that was most easy for me to remember, and that date is my diagnosis date, February 11, 2015.

My first year. I was so busy with surgeries; it felt as though I was collecting hospital bracelets like a kid, you know, collects game tickets at the arcade for the biggest stuffed animal in the back corner. It was a whirlwind of doctor appointments and new terminology, basically learning a new language. Cancer has its own language.

It was surgeries, and blood draws. It was second opinions. It was fear. It was chaos. And the cancer train moves so fast; I didn’t have time to really even think. Well, I did, because I did do a lot of thinking, and I did a lot of analyzing, but it was all very focused. It was a time where I was stepping back from my full-time job and going into a part-time job because I knew that with everything going on that I was going to have to focus on my healing.

So it was this huge year of tumultuous change that just felt like so much was being forced on me. And though I was free to choose my options, I wasn’t free to choose. I didn’t select the options to choose from.

I did not celebrate that cancerversary.

I don’t think that actually, at that point, I even knew what a cancerversary was.

My second year as a breast cancer survivor started off much the same. More poking, more prodding, more invasive procedures and photos and all of that fun stuff, more blood draws. It was... It was just more chaos.

And though it was a little better, I finished the year with reconstructed breasts, fully reconstructed breasts. I finished the year with newly crafted nipples, freshly installed. I finished the year with my artwork of my tattoos to cover up my mastectomy scars well in progress. And so there were some good things in that year, and that was the year I also remember becoming aware of the term cancerversary as a girlfriend and I who were diagnosed in the same month actually said, hey, you know, it’s been a couple of years. Happy cancerversary, I guess.

Um. But I didn’t celebrate that cancerversary. What I did realize that year is that my body, my subconscious mind keeps pretty good time. So even though I had perhaps consciously pushed away or forgotten certain dates, times, things, situations, experiences. My subconscious mind was at work. My second year, I realized that I could pretty much pinpoint. Big dates, big milestones in my path to treatment, because I would have a malaise or a depression, I would have a lack of energy and, believe it or not, it was actually Facebook that... I was trying to figure out, “Why am I in such a funk?”

And my Facebook memories popped up, and there was a photo of me in recovery after one of my surgeries. And then it all clicked. So I, I don’t know, that was not I didn’t feel like celebrating.

My third year as a breast cancer survivor, I had clawed my way back up into the corporate world, I was back into an executive position, I was back at my previous salary. I had thought that I had gotten my normal back.

Right, because that was something in year two I was desperately trying to do as well, is find and find my normal because it had just been tossed out the window. And as I did that. I found myself in an extremely toxic work environment. And, it’s interesting because as I reflect, I’m sure that I had more than one toxic work environment, but this time I had this awareness of the importance of time, and that time is an exchange of an experience for literally bits of my life.

And I remember thinking. Stress is so bad for breast cancer; it’s a high, highly correlated with breast cancer. I am not doing myself any favors by staying in this environment, and what am I getting out of it? I’m exactly back where I started, where I was at this space and place of saying, “I’ll take a vacation later. I’ll do whatever it is that I desire to do or experience... later.” And I found myself back into the habit of starting to bank time; I didn’t know if I had or not.

And so that year was actually. It was a good year, and it was a bad year. It was a good year in that. I awoke, but it was a bad year in the level of stress and the three-hour commute and all of that stuff.

So I did something that I didn’t even do when I was first diagnosed. Now, when I was first diagnosed, I heard the words, you have cancer and a lot of it. And I went to Red Lobster; I had a glass of Merlot. I poked at a cheddar biscuit, and then I drove myself to work, and I went into a finance meeting followed by a board meeting. That’s what I did after hearing I had cancer. So. I didn’t take a break; even though I stepped back into a part-time position, I still didn’t take a break.

And so I found myself in my third year leaving that job and taking three months off, and I promise you, I must have slept most of those most of those months away, but it was something that I thought my body needed and I needed. And that toxic work environment was also something I needed. I needed that two by four to the forehead to say, wake up. Is this really what you want to do? You’re going exactly back into the same patterns and habits and whatever. So you found your normal. Is that normal, really what you want in your life?

On top of all of that. I was still adjusting to chronic pain. I had under the muscle implants with terrible animation; I had constant muscle spasms, I had neck pain, I had migraines, I had icicle boobs. I had to literally sometimes to warm myself up. I had to put a heating pad around my chest to get myself warm because once they got cold, it was just... I couldn’t warm up.

And if you have... If you’ve experienced this, you know exactly what I’m talking about. Icicle boobs are a real thing. I have great friends who knitted me some amazing bra inserts, and one sent me fur to help keep them warm. It was crazy, and I was still adjusting. And I didn’t... I didn’t know... I was at battle. I was still a little bit in battle with my body. And I still felt betrayed, and long story short, I didn’t celebrate my cancerversary.

My fourth year. I really felt like I was getting into my stride; I’d left that job, I’d started my own consulting, I thought, hey, I am going to take my Masters in Business and my twenty-five years of executive experience, and I’m going to put that to work for myself and for my clients. And so I started my business and started doing consulting work for non-profits and for the public sector and private sector and also serving as an entrepreneurial mentor for folks that are looking to get started or, you know, think of me as a provocateur of change for those that are wanting to grow and scale and just are stuck and can’t get past a barrier.

And it’s fun. And I love it. And it’s a positive environment, and it’s everything that I want in my life that that really, you know, going from dreading waking up. Because you have to hurry, hurry, hurry to go sit in traffic for an hour and a half versus stepping intentionally and joyfully into my life every day, and that is such a huge win.

I started running again, my body and I, we started to communicate and actually sort of enjoy each other’s company again, which was fantastic, and I don’t know, it just everything... there were so many things that were going great, and yet I still... Still felt this cloud of uncertainty. And I’m not sure if I would call it fear, but just an inability to trust, to get comfortable and trust that anything I built was going to stay, that I was going to stay.

See, I had a doctor tell me that if I didn’t do certain treatments, that I would be lucky. To have five years and so with all of these great things going on in my fourth year. I was also running out the clock.

Now, I remember when I was told this, I remember. Having a little bit of spunk, and that’s probably a really nice way to say it, but rejecting that as truth and saying, look, I don’t have literally saying to the provider, look, I don’t have a secret expiration date at the bottom of my foot that only you can see we don’t know. And my whole goal is to do everything I can to be at the long end of that bell curve so that I’m here as long as I can be here. And so consciously, I was like, absolutely not. That is not a thing. That is not my truth. I do not accept this information.

But that subconscious... oh... it’s working all the time, isn’t it? And so. I... I don’t know as I came to that. Entering my fifth year, as I came into that next cancerversary, I was like, ugh. I don’t know, thinking that what I was not going to wake up in the morning, like boom, I would just be gone.

Who knows?

But there was definitely a cloud, and it doesn’t make sense. It’s perfectly... I use this all the time with Grif; it’s absolutely logically illogical. In other words, yes, it makes no sense, and it’s an illogical thought. And yet, in all of the chaos and all of the trauma, it is perfectly logical to have this sense and this feeling and this dis.., this unease with this disease.

Needless to say, I didn’t celebrate that cancerversary. I felt like any minute now, something’s going to change, and I might not be here.

So. Cautiously walking into that fifth year. Still very much alive, obviously, and... Oh, cancer is the gift that keeps on giving. I popped some sutures in one of my reconstructed breasts, and so I would wake up every morning, and I had this little spot where my implant would herniate out, and it hurt. And here I was, finally feeling like I’m getting into my stride. I’m running on a regular basis. I’m getting my fitness back, and I get to go have surgery again.

And so I had my breast reconstruction. We did an exchange, and actually, it turned out to be a really amazing thing for me. Because we went from under the muscle to over the muscle in reconstruction, and my body was like, thank you. Gone were the migraines, gone was the neck pain, the shoulder pain, the rib that was constantly out of place, the icicle boobs.

And so it just seemed to remedy a whole bunch of things. And yet, at the same time, it also set me back. And I had so much fear going into that surgery. I was so afraid that, you know, they were they were going to go in there and that my plastic surgeon was going to see cancer. And there was just there was going to be something that would go wrong. Like I was just pushing my luck, going back in, you know, it was just.

It was such. It was actually more stress, I think, in some ways than the original diagnosis and the original, the very first procedure, and I say that because. After going through everything I’d been through, I’d gotten hope back, right? I was getting hope back. I was feeling happiness back, and I was waking up. My body was detoxing from all of the prescription drugs that had been on. I... you know, so many things were finally clicking and going right. And there was just so much fear that they would find something wrong.

Thankfully. They didn’t. And the other amazing thing is I can take a full breath again; my plastic surgeon, who is amazing, actually said to me that she doesn’t think she’s ever seen pectoral muscles as large as mine. So they were very happy to be put back where they belong. So. With that year, it was a cautious, I guess, sort of acknowledgment of my cancerversary.

And here we are at year six.

So, remember the timeline I was talking about at the start of this. About five years, great news or good news, in 10 years is great news, and 15 years is phenomenal news. Well, something else I didn’t know until I was diagnosed with breast cancer is how many different types of breast cancer and how many different subtypes of breast cancer and all of the things.

And. I happened to have infiltrating lobular carcinoma. Now, my cancer is about 10 to 15 percent of breast cancers. Here’s the wonky thing. That means that it is the second most common breast cancer. However, that is still only 10 to 15 percent of breast cancers, and it hasn’t really... It’s just that, in fact, it is just starting to really be studied.

So I was I was diagnosed in February of 2015. And the fun fact, the first international symposium on ILC was held in October of 2016.

So it’s interesting because at that symposium, Dr. Charles Perrow and colleagues within the Cancer Genome Atlas TCGA, they were referencing a landmark paper that they published that established ILC as a distinct subtype of invasive breast cancer. And his group identified multiple genomic alterations, distinguishing ILC from invasive ductal carcinoma or IDC, highlighting the need for new treatment approaches for this breast cancer subtype. So as we study my type of cancer. It actually has a longer recurrence pattern, and so with IDC, with ductal, yes, the five, 10, 15, those numbers totally check out for IDC.

For ILC. It tends to recur later, and it also has its own weird, distinct mets pattern. It’s a little sneaky. So that left me a little... It leaves me as I enter my sixth year, it leaves me a little, uh, unsure about how to celebrate, right? Like thinking about a cancerversary. And is that something that I want to... I don’t know, embrace... celebrate... mark every year. It’s this weird mix of awareness; it’s not like I wouldn’t be aware anyway, right every year I know in the back of my mind, if not the forefront of my mind, I will be thinking, oh, it’s February, and I was diagnosed, and I’ll do the math. And it’s not like I’m never going to... well, I can’t say never. I don’t see myself not ever recognizing that date.

And yet, instead of feeling like I’m walking away from possible recurrence. Frankly, it feels a little like I’m walking toward a potential recurrence. Uh. MIND GAMES, right? Oh, I’ll never forget thinking to myself after one of the surgeries, I don’t remember which one I’ll never forget thinking how amazing the physical body is and how the physical body just... can just recover from just about anything; it just does its work, it it it makes modifications and adjusts. And then mentally... mentally, it is this battle. It takes so much more work, at least for me. I won’t speak for anybody else. So, Dr. Österreich noted that they’re still learning, um, the medical community is still learning, and he said we need better models of ILC, and because it is so rare, we need to collaborate. Clinical trials are the only way we are going to be able to evaluate different imaging modalities and treatments, as well as collect tissue for research. We need to make people understand that this is a distinct disease, and there is still so much we don’t understand about its biology and its pathology.

So. It seems I have a choice, right? I can choose to let this be because now I have the gift of awareness. I saw what the five-year timeline did and how it was robbing me of some joy that it was limiting me in my beliefs, that it was holding me back in some areas, that it was setting me up for failure, that it was limiting my ability and desire to fully live, to fully love, to to to fully succeed, because there was this concern that, well, in five years. I might not be here, so what’s the point?

But we don’t know that I don’t know that doctors don’t know that, and even though we’re looking at numbers and we’re looking at the statistical data, and yes, that has absolute merit, and we need to have the information, and we need to collect the information, and we need to study the information.

I am still, you are still, a unique Individual. And where we fall as individuals on that bell curve, anybody knows.

So. I did decide to celebrate this cancerversary. I’m only going to celebrate the one, frankly, a lot of the... a lot of the experiences I don’t want to relive every year, and frankly, I don’t want to relive being told you have cancer and a lot of it every year. But that’s actually not the part that I am choosing to focus on.

I was infused with fear and anger and denial, the feeling of betrayal from my body, from my husband that had asked for a divorce when I told him I was going to get a mammo because I thought that I had breast cancer. So much trauma. And yet, at this point, I’m able to see the gift, which is this awareness of time. And that means that I am just busy gobbling up as much of life’s experiences, as many of life’s experiences, as I can.

None of us know how long we’re going to be here. None of us. And we all end up in the same place. So with that. I celebrated. And I think from here on out, I’ll keep celebrating my cancerversary.

So tell me about you. Drop me a note below in the show notes or in the on the blog or down below if you’re watching this on YouTube, definitely. Let me know. Do you celebrate a cancerversary? How did you choose your date? And is there anything special that you do? And are there certain years, or can you relate to any of this?

I want to thank you so much for listening and for being part of the podcast, I have so much appreciation, and I get so much love from you guys, and oh, my gosh. And the guests are just amazing. It’s always great when I do a solo, but I have to I have to tell you, I love talking with our guests. It’s just one of my favorite things.

But don’t forget to click subscribe, like, and share because, oh my goodness, we are creating our own little corner of the internet where we can actually talk about the really real realities of breast cancer, and if you’re on the Clubhouse app, by the way, I am doing an after the show kind of live chat, and that is happening weekly on Wednesdays at 5:30 p.m. Pacific Time. So you can find me, and my details for Clubhouse is just @tammey, are also going to be in the show notes, but join us out there and come join the conversation because I know it is so hard right now to find and have community with COVID and all of the COVID craziness. So. Oh, yeah, join us out there for some great conversation.

And until next time. Keep building Your Killer Life.

Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.

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