So here we are, folks, I'm back. What I thought was a full stop wasn’t at all. It was simply a comma in blogging. Today I'm writing what is the easiest and hardest and easiest and hardest blog. It's hard to think of it as a comeback, but it is that.
So how do I explain this? First of all, don't panic when I say a comeback. I don't mean the cancer is back. I mean that I'm back. I'm back blogging. I didn't actually realize the value of what I wrote or what it meant to others. In many ways, despite how I present externally, I am quite self-conscious and humble to think that what I would share would have any value or meaning to others.
It was really a way for me to simply document my journey. It was an easy way to keep lots of people updated, rather than informed. And as I played in the information space, it was one from my own reflections, honestly, a lot less medical and more situational. What I didn't realize going through this, is that sharing those experiences made others, and those around them feel more "normal".
There it is again, that weird word normal. I'm sure we'll touch more on it later, but as I embrace my new normal, this feels like the perfect time to tell you where I REALLY am today.
I stopped blogging at the end of last year, it was that time, that place, where I felt that we should be putting a full stop on it. My journey with the big complex stuff was over. It felt like a time to move on. But move on to what? It's not as simple and you ring a bell and it's all over (despite how hard and long I wished that was the case). So here it is a whistle stop tour of the last twenty two months… with all of the fun stuff you missed over the last 10!
In January 2023 I'd been diagnosed with breast cancer. I had a tumor in my right breast, which we would later find out a couple of key factors. Number one, it was really big, basically my whole right boob. Number two, it hadn't stayed put, and my lymph nodes were infected, as well as my skin. They obviously, and by they I mean the incredible medical team I had, jumped on this quickly. They got going with my treatment, and very soon I would find myself doing eight double-dose intensive chemo treatments every two weeks at Grand River Cancer Center in Kitchener.
Chemo was all the things that you would expect it to be—big, scary, complex, painful, with a pile of side effects. Once I had navigated that journey… soooo easy to say in a sentence and yet so difficult to achieve… I went in for an elective double mastectomy. (I encourage you to read back on some of my early chemo-related blog articles to get the dirty details)
You know, it's funny when you say elective and mastectomy in the same sentence. The right side, there was no election—that had to go. And the left side, although in theory, my choice was something that I couldn't ever imagine keeping as I knew the risks that it presented to me. You see, I hate to say it out loud, but my cancer was advanced and hungry, the kind that you don't want to have any breast tissue snacks around to feed. (Snacks joke and mastectomy that has to be a new win in the joke category!) And speaking of hungry, at the point of diagnosis, I also started on a drug that took away all of my ovarian estrogen. This particular drug is injected into my stomach every single month in a large needle. It is in pellet form and slowly is release to ensure that there is no estrogen present to, again, feed the cancer.
After the double mastectomy, we had a little hiccup—a hiccup that today is more relevant than it was then, but we'll get to that. And that was that I had skin necrosis. What is skin necrosis, you ask? Well, it's when the skin dies, and my skin died, or part of it. So one week after surgery, I was back in having emergency surgery to take away more skin. It's one of those stitching jobs that my granny would have been proud of if I had been darning up holy socks. It went from being pretty and to industrial, but at the end of the day, who cares? Because it got the job done.
Once I had healed from surgery—and that was a few weeks, months—you know, it felt like a lifetime in the process, but it was only about six weeks before I started radiation. Now, radiation was supposed to be three weeks every weekday, but this is the point at which, from the pathology reports of the mastectomy, we learned that the cancer cells were present in my skin, and the mastectomy had been taken with no clear margins.
No clear margins? That basically means that right up to the edge of the specimen that was taken, there were cancer cells present, and statistically speaking, that would say that there were cancer cells left behind. So we turned up the radiation plan and went from three weeks to seven weeks every weekday. The radiation was also bolused into my skin to fry anything that might be left behind, the last few days of radiation were deeply focused on the area where the margins, again, were not clear.
I'll resist the temptation to draw parallels between, you know, warming up your pizza in the oven or the microwave and putting it in for 10 minutes versus one… but you get the idea! The endpoint is definitely a fried, cancer-free, but not exactly healthy situation. THEN DING DONG - that's the point at which you get to ring the bell. It's the point in which the world celebrates that your treatment is over.
My treatment, in many ways, was far from over. I started more drugs—one to take away any presence of estrogen in my joints. The next drug that they started me on was a drug that, in many ways, is similar to an at-home chemotherapy, meaning it's cytotoxic, hand-delivered, massively expensive, and gives you the worst side effects ever. But because there are side effects you don't see, you're less familiar.
The last of the drugs is one that's hospital-administered, and it's kind of cool. Originally used for osteoporosis, it's been found to do two great things for breast cancer patients: number one, protect the bones from cancer and stop metastasis, while also preventing the bones from osteoporosis as we strip away all of the estrogen in our body. I'm certainly not going to get all scientific and technical on you because, again, there are still parts of this that I find difficult to explain, so I'll simply stick to "cool".
The drugs are not a short term addition to my life, some for 3 years, some for 10. So hence the reason I refer to them as my new normal. The simple summary of all of the drugs is that they make me feel like I'm 100 years old because of the joint pain and up until recently, when they reduced my dose, they gave me uncontrollable, unpredictable diarrhea. They've helped me gain weight—helped being a very strange word—but again, we'll get to that here shortly, too. And in addition to that, they've swollen all of my joints so important things in my life, like my wedding ring, don't fit anymore.
It's a path to recovery. It's a path to protection against cancer. But it doesn't have to be a path that I enjoy walking. I would say tolerating for all the right reasons is the important part, and certainly I don't let it get me down. But I wouldn't be human if I didn't share that there are days where I just shake my head and hate what cancer has done to me.
Frequently, if I allude to the changes I have experienced, I will get responses like "welcome to old age", or "I feel the same". You know, it's not really about what's happening, because menopause, weight gain, creaky joints, all of those things would have come with age. Yes, I get that. I know that. I appreciate that. But to me, it happened overnight, and there was no part of it that was a choice. It was like aging rapidly, and that's the part that hurts. We all know we're going to get older. We know that these things are going to happen. We can do many things to help in that journey, but it was the sheer speed at which all of that was brought on. Like being whisked up in an uncontrollable cancer tornado.
So where am I in the storm today? After my mastectomy, tissue expanders placed under my chest. These were to stretch the skin to allow for future reconstruction. Given the nature of my cancer, immediate reconstruction was not an option for me due to the fact that I needed large amounts of radiation.
The skin expanders have gracefully sat under my chest for about 16 months. At this point, to the outside world, you would have no idea that they're there, but inside, I feel them. They're rough and ready, with blunt edges, simply there as a short term device to get the job done. They're plastic sacks filled with saline stretching and pressing against my skin to help it stretch. Again, there's no part of that that is a long-term solution or a comfy one, just simply a means to an end.
Earlier this year, upon consultation with my plastic surgeon, we knew that my skin had taken quite a beating with radiation. It was very, very thin, and in addition to that, a lot of scar tissue had presented from the mastectomy. Neither of those things are really what you want when you're looking to have reconstruction done. It was sort of a weird game at that point. We needed to act quickly to ensure that the scar tissue didn't adhere to the new very thin tissue or skin, but we also needed to wait to see if the skin would heal and improve with time. So here's where I've been, this weird space, kind of purgatory. I’m stuck between two different places, waiting for a surgery day, waiting for my skin to heal, and hoping that more scar tissue didn't present.
We've talked many times with the plastic surgeon, often getting our hopes up about a surgery date and, most recently, having two surgery dates set and canceled because of emergency cancer patients. You know, there's not one part of me that is disappointed to give up a date to somebody who is in exactly the same situation I was in—an emergency, needing the surgery to save their life. My surgery isn't to save my life. It's to finish part of a process that started with an operation to save my life. Those are two very different things, but in no situation is it just reconstruction.
I'm going to go on a side tangent for a second, as I use those words very, very specifically: JUST RECONSTRUCTION.
Until recently I was expecting to go in and have implants put into my chest. It's an operation under general anesthetic and takes somewhere between four to six hours to do. It's weird in terms of relativity that when you say to people, "I'm going in for surgery," and they ask why, there’s this, "Oh, you're just having reconstruction?" Like I am off to get some fancy TV like make you look better… a 40 minute miracle.
They are not wrong, it will make me look better. But this is not about breast enhancement. This is about replacing my boobs that were taken away because cancer decided it wanted them. If, in any other circumstance, I said to somebody, "Hey, I'm going in for a four-hour surgery and a general anesthetic," blah, blah, blah, it would be like, "Wow, that's a big thing. That's a big deal." But no, somehow, society has put us in a place where this feels or is treated like it's an esthetic option.
I do have amazing friends in my world who have chosen to live flat, and I deeply, deeply respect that choice. For me, flat wasn't really flat; it was two concave dishes on my chest, and I just wasn't ready to live that way. Personally, I could, I would, especially if there was no other option. But when making my choices on how I wanted to move forward in life, I chose the option that gave me the most options in the future, and that's what brings me full circle today. I am in a situation where I thought I was having implants, but I am not.
As recently as just a couple of weeks ago, when the plastic surgeon and I met, we discussed all of the pros and cons based upon where my skin and my recovery is today. The cons: my skin is very, very thin, and if we were to move forward with an implant, I may run the risk of the skin not surviving. What do you do in that situation? Well, the next option for me would be to take a skin graft off my back, and that was, for me, a place I didn't ever want to go.
So what comes next then? Well, as I mentioned earlier in this writing, I had fortunately gained weight. There is no fortunate in the weight gain other than the fact that I have grown enough tissue to be in a position where we can do a tissue transfer to reconstruct my breast.
A tissue transfer. But what exactly does that entail? Quite simply, taking the tissue from my abdomen and my stomach and using it to create a breast. It's an advanced technique that my plastic surgeon excels at, reconnecting veins to allow the tissue to survive. It’s a big surgery, one that will take her somewhere between 12 to 18 hours to complete, and an estimated 3 months to recover. Yes, funny, "just reconstruction".
I have a tentative date in December, and as I begin to prepare this week with CT scans to map the veins, and spreadsheets to once again think about stepping away from work I take comfort in one thing, that I took the time to do this. To sit, to write, to share. Thank you for reading, for supporting and for following this wild ride. It took me longer than a smart kid should have to realize I need you more than I ever knew. So this is the first of many more... as it was a comma, not a full stop.
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