I hope everyone is enjoying this hot summer! I've noticed a pattern each summer... we get so excited for summer, make a list of activities and do ALL the summer things in June and by the time the 4th of July ends we're burned out! Is this anyone else? We've had a very fun-filled, adventurous, and memorable summer so far. This last week we've taken it easy and it's nice to regroup and rest. We're just loving life right now.
These last few months have been really special for me. I feel like I'm finally catching up with my kids. I haven't been home all day with all three of them (6, 4, and almost 2) since before my cancer diagnosis. Yes, they are little and needy and require lots of food, naps, attention, love, discipline, patience, and wipes (why are kids so sticky and when do they stop picking their noses?!). Anyway, I want to update everyone on what's going on in my cancery life.
First of all, I miss the "easy" days of chemo. You'd think being done with the big cancer treatments mean you can put it all behind you, right? That's what I thought. I thought I'd be able to get back to how I was before I was diagnosed.
HA HA HA HA
I can't speak for every cancer patient, but finishing treatment has been harder for me than my actual treatment. Yup, there I said it! The physical side effects from my chemo, surgery, radiation has been never ending. Literally every week there's something I suffer from, something new. A normal person could just shake it off as nothing, but for me? I have to be dramatic and consider calling 911. Can I just tell you some of the things I've experienced in the last like 2 months?
Vertigo, again. Carbon Monoxide poisoning (we did have the fire department come for this, don't worry we're fine! (but if you want to know what CM poisoning feels like, it feels like you're dying from the flu...), Achilles tendinitis that moved into my calf and I thought I had a blood clot (there's a blood test for this, I had to go to the emergency clinic to be tested just to be safe since I'm at a high risk for blood clots), I had an allergic reaction to what I think was milk so I now need to see an allergist to get tested (I mean, seriously?). Let's see what else? One of my heart medications caused me to have a cough that got worse and worse until I was in so much pain from coughing. I was so mad one night at this stupid cough that I emailed my cardiologist who then the next day sent a new prescription and ever since I started taking that, my cough disappeared. I thought it was cancer in my lungs, it was really awful and scary and annoying. I had to tell people "sorry I'm not sick, it's just a side effect from medication...long story."
Fatigue, oh the fatigue!
And with the new heart medication I traded in coughing with more fatigue. I've had to nap everyday, I can't keep my eyes open. I think my body will adjust, but for now I rely on naps and early bedtime!
Lymphadema prevention...messages and exercise and staying out of the sun and being careful when I cook on the stove and I can't use my right arm to carry anything (groceries, purse, children...)
So now this blog post feels like I'm on a huge complaining rant. I think the point of all of this is, you never know what someone is going through. It's important that people know what stage 4 metastatic breast cancer looks like. Sometimes someone who is going through cancer treatments has hair! Sometimes they work a full-time job. Sometimes they're pregnant. Sometimes they run marathons. Sometimes they wear makeup and fancy clothes. Sometimes they never talk about cancer. And sometimes they ride a blow-up dolphin with their 1 year old daughter.
It's like that scene in the beginning of Incredibles. "Where are they now? They walk among us..."
According to the American Cancer Society, the median survival rate for someone with stage 4 inflammatory breast cancer is 21 months. Less than 2 years. Other metastatic breast cancers range from 3-5 years. That's not fair. 2 years, 5 years, 7 years, etc it's never enough time. And that short time left is spent being sick. I've been there, down the road with the dark thoughts thinking I was dying. When I was sick from chemo, it felt like I was dying. I mean, I had a terminal cancer, what other thing can you possibly think about?
Dozens of times this last year and a half I have heard of a story, movie, any person really who had died young. I search and search and find it's cancer. I dig deeper to find out what kind of cancer. 9/10 it's breast cancer. It's everywhere. I hadn't noticed before. Metastatic breast cancer kills an average of 40,000 Americans a year.
There are some researchers/doctors who believe that with aggressive treatment for oligometastatic breast cancer coupled with those who have a complete pathological response to their first line of treatment (like me), there is a possibility of a cure. There are women, a small percent, who's cancer never comes back. Stage 4, like me, doing all the maintenance treatment and who live decades to an old age and dies of something besides breast cancer. A cure.
I also read a study that showed a 98% ten year survival rate with women who had Her2+ metastatic breast cancer AND had a complete pathological response to treatment. Like me.
I like those numbers.
So, I have one foot into a possible cure (maybe it's just my pinky toe), and the other foot into a terminal disease. This is where I'm at. As I've studied the research and statistics I understand the feeling I had from my oncologist when I was first diagnosed. I felt from him "this is bad, but it's going to be ok." How strange, but true. I know I complained a lot at the beginning of this blog post, and yes some days feel like that (dramatic and wah poor me), but most of my thoughts and feelings are positive and normal, I think, for a 30 year old mom of three young kids.
Ok, so I'm not sure what the point of this blog post is. I want to share with everyone that I'm doing really well! That considering all the "scary stuff" we experienced last year, I don't think it's scary anymore. Well, maybe like 5% scary, but I don't feel like I'm dying at a faster rate than anyone else ;)
Something I've learned is we never know what tomorrow will bring. Life can change so quickly. So I think to myself "I feel good today, today is a good day." And focus on today. I also enjoy my life now. I really do! All the small things that seemed to get in the way before no longer is there. Matt and I have decided how we're going to live our life and we're doing it! Life isn't perfect, but I think my life is pretty good.
