Yesterday was a long day, but we got the news we wanted to hear. The scans are still showing no progression. I’m relieved, although not as much as you’d think. The feeling is being overshadowed by survivors guilt. I’ll just say it– It was a bad couple of weeks. Usually I’m not so negative, but this was exceptional.
In the weeks leading up to a scan I can get very emotional. It’s intense. Just ask Jon, who has seen me cry at least a dozen times this year over God Knows What. I can talk to myself all I want about how everything is going to be fine but the truth is, nobody can know that. Going into the doctor’s office to find out the test results feels like a game of roulette. Maybe if I spin the wheel enough times, my number will eventually get called…that’s not how it works, though. It isn’t random at all.
I felt good yesterday. Things went smoothly and I wasn’t really nervous. That really puts my life in perspective. How bad does your week have to be for Scan Day to be less stressful? Well I will tell you, but then I’m going to bed. I’ve fallen asleep a couple times already while trying to write this post.
Found out some devastating news last week and I’m still in a bit of shock. My friend Lauren died. Nobody was expecting it. She had leukemia, but she was fighting it. When we talked after Christmas she sounded great. Told her I would like to come visit her in the Spring and she said she would love that. I don’t understand what happened and I can’t help but think, why the fuck are my friends always dying? I already know the answer. It’s because I seek out relationships with people that have walked in my shoes. It’s because I don’t like feeling alone. It’s the harsh reality of cancer and it comes with a free side of Survivor’s Guilt.
So I say to myself- Just be thankful. Just be thankful you had a good scan this time. These women would have wanted you to keep living well.
I’ve been thinking of you. I’ve been wondering what I will write. Over Christmas I was feeling light and bubbly and I wanted to tell you that, but each time I sat down to write it felt like I was writing from inside a Hallmark channel movie. It was so cheesy because I was feeling so cheesy. So I waited. And then last week, once the holidays were over, I thought I would write about the new year and what I envisioned it might bring. But that was boring to me, too. Then I figured I’ll eventually have to write something about my upcoming scan (which is next Wednesday, January 17th, by the way) and before I could do that a bomb of a text message greeted me as I woke up this morning:
“It’s back and in my brain :(“
A friend of mine has just learned that her cancer showed up in her brain. This is one of the scariest things a woman in my position can be told. I can’t imagine the sea of swirling thoughts that are going through her head right now. Why is this disease so cruel? I know we are making strides and discovering new treatments, but GO FASTER, damn it! For now, I don’t have anything else to say about it.
I await my scan and hope that, once again, it will show nothing new. That is a highly likely scenario. It doesn’t mean that I can just turn my anxiety off, like a light switch. If you were eating out at a restaurant and, upon finishing your meal, you found out that there was a 9 out of 10 chance that you wouldn’t get food poisoning, you know you’d be like, “Well, what about the 1 in 10 that says I will?!”. It’s the same thing, with higher stakes. It doesn’t matter if the odds are in my favor or there are no physical symptoms that would hint towards a bad scan. I’m still going to have anxiety leading up to that moment when my doctor tells me otherwise. I’ll be sure to post the results of my scan shortly after I get them.
I’m actually really happy right now. I could totally complain about the gloomy weather we’ve been having or the fact that I had to make a couple extra trips to Philadelphia this Fall but, shit…life is pretty great.
Even if you factor in the cancer, I’m still pretty healthy. I’ve had a number of clean scans over the last year and I am finally starting to settle in and not be as afraid of what is coming next (spoiler alert: it’s Faslodex). Of course, if my life were a movie I should be expecting some kind of plot twist. I hope for now that is far away. It’s realistic to think that it might be. ‘Far’is a relative term of course, which takes new meaning when you have terminal cancer. You know, I’ve been thinking about that word ‘terminal’ too. With all of the new research being done, additional drugs being created, and the new hot babe in town, “Immunology”, I do feel very hopeful that my cancer can be maintained as more of a chronic disease. Maybe even cured one day.
I did not used to believe that was possible, but I’m starting to come around to the idea that I might actually live a long life. Perhaps I’ll have a future that is measured in decades. Maybe. We don’t know. But it’s nice to feel like it’s possible. And if you were about to reassure me that I dohave a long life ahead of me, then let me stop you right there. That is your own wishful thinking that you are asserting onto me. Unless you can see into the future, you can’t know that. It’s okay. Breathe. Sitting with the truth, even if we don’t like it, makes us stronger and more prepared for life.
I am filled to the brim with creative energy and inspiration. Never in my adult life can I remember feeling so optimistic about Winter. Also, I got my Will and Living Will taken care of yesterday as part of a free legal clinic that I heard about through CancerCare®. It was great- I feel really empowered by it. I think some people just don’t want to talk about that stuff because they think it’s morbid, but I feel a lot better that it’s all taken care of. Now I can put that behind me and get back to living! I didn’t realize it was weighing on me.
Finally, it’s weird but I am even excited to tell you that I smashed my finger and it’s really annoying me! I smashed my finger in a window…that makes it sound like I did it on purpose…my finger was accidentally smashed when it got in the way of a window pane that fell closed. It was a real pane…BA-DUM-tssssss. Does that joke work in writing? Let me know 🙂 So my finger nail is all black and it’s totally going to fall off one day, but until then it’s just gross and a little numb and a lot distracting. I spend approximately 5% of my day staring at it, pushing on it, and comparing it side-by-side to my non-smashed finger. Do NOT worry, you guys, I am taking pictures and I hope to make a slideshow of the progress as it grows out so we can ALL enjoy. This is for SCIENCE! It’s too bad I didn’t start from the time of the injury (missed opportunity!).
I recognize that this post is very light and happy and it’s great to be able to share that with you all. It’s my goal that with this blog we can share some of the more real moments of my life. I want to invite you to be with me, laugh with me, and cry with me, as I go through some Real Ass Shit. Sometimes I struggle with just how much of myself I should share with the world. It’s a balancing act between being accessible and having some things that are just for me. But I tell you this because I try not to filter it for you. This blog needs to be authentic. And today I’m telling you that I am authentically happy.
I have completed another 200+ miles in three days. Having done it twice now with a training routine that I would describe as inconsistent at best, I am feeling a lot more confident about riding. Also, I really like group riding. It’s so much fun to move as a pack, calling out potholes, cars, and stops to my fellow riders. Instantly, it makes me feel like I’m part of a team and It’s not important that I don’t know the names of the people who I’m riding with! We are all trying to keep each other safe.
For the most part, the weather cooperated. It was warm and sticky most of the time, which finally turned to rain on Sunday. Since I never rode in the rain, it was a good learning experience. Kate got a flat that last day, which was the first and only time we had any technical difficulties. Even that was a learning experience- I had never changed a tire! I still have never changed one. It was the Ride Marshall that stopped to help us out, but I watched closely and I’m hopeful that I’ll be able to hold my own if and when it happens to me.
Check out some of these awesome photos from the ride!
I’m already looking forward to next year and thinking about how I’m going to grow my team, raise more money, and become a better rider. But that leaves me trying to answer the question, “what do I do now that the ride is over?”. All summer, I look forward to this ride. I train. I sweat. I prepare. And then I bike TWO HUNDRED MILES in one weekend! And I’m right where I want to be. So when my ride is over and the next one isn’t for another year, I naturally get a little bummed out.
I need the structure. Jon and I worked really well together during those three days. We each knew what our role was and it made me feel really good to see how smooth everything went. Kevin and Kate were great, too. We laughed through the whole weekend. Kate said she wants to join me next year, as long as it doesn’t conflict with her Ironman triathlon weekend. So if you or anyone you know wants to join the coolest TdP team ever…..let me know, I might have an opening for you 😉
Lastly, I just want to thank everyone that donated to my ride, whether it was $5 or $500. I am so lucky to have such wonderful friends and family in my life.
How is your Fall going? The calendar says it only started a week ago but it feels like it’s been around since late August when the bugs started singing and the late season wildflowers started blooming. If I’m being honest, there is a lot of good that comes with Fall but it takes me until about NOW to let go of Summer and embrace the new season.
Unfortunately, this has been a rough start for the members of my community (and by that I mean the metastatic breast cancer group). September brings not one, but two, losses. Laurie (35) passed on September 17th and Nicole (40), a member of my online community, passed on September 24th. This stinks. I want to call attention to these two amazing women who fought hard for every day, despite the difficult hand they were dealt.
Despite this awful news, I am doing well. My scan earlier this month went great- still clear of any signs of active disease. Ibrance/Letrozole still working. Still managing some annoying side effects to the drugs (low energy, hot flashes, and night sweats), but I really can’t complain. I can still do all the things I want to do. When it comes down to it, that is the thing that scares me the most. The easiest way to articulate my anxiety is to say that I worry about the slow stripping of freedom that may or may not come to pass. But since that is not currently a problem for me, I’m going to put that on the emotional shelf.
So, as I said, I can do all the things I want. That includes participating in an annual fundraising event called Tour de Pink. Many of you already know that I am participating in this event. It’s next week already! Yesterday I went on a training ride. That is something that never happens during the week. It was actually quite killer. I did 11.3 miles – not very far – but it was a very hilly ride at about 1300 feet of climbing (~114ft/mile). I am trying to understand this for myself. So, an easy, quick ride that I do if I don’t have much time is 44ft/mile. My ride to work is 75ft/mile. My point is, I managed to get a good amount of strength training and cardio in a short amount of time.
Our Awesome MetaThriver Jerseys
Metastatic Breast Cancer Ribbon
I’m excited. My brother and cousin are coming out here to join me for the ride. Kate is riding along side me and Kevin is joining the pit crew. We just got our jerseys for the ride and I wanted to point out how awesome the colors are. We are team MetaThriver. The name is, obviously, a nod to the Metastatic crowd. Even though these women represent the majority of the population that is dying from breast cancer, we are disproportionately represented in fundraising events. I thought I could help be part of that change and raise awareness for what I think actually needs it. The colors of my jersey are pink, green, and blue. The colors of the metastatic breast cancer ribbon are PINK, GREEN, and BLUE! You guys, this is NOT a custom jersey. I searched high and low to find something off the shelf that I liked and when I found this I was so excited. So, I don’t want it to be just my secret, I wanted everyone to know it 😉
Our team has raised $5,100 for this event, thanks to many of you. If you would still like to donate, here is the link: https://east.ysctourdepink.org/MetaThriver
I look forward to letting you know how things turn out next week and, more importantly, I look forward to doing what I want to do…because I still can, and that is pretty great.
I never called you. I told myself I would about fifty times. I think about you a lot but I didn’t think we would run out of time like this. You were the first young woman I had ever met with metastatic disease. It was before I even knew what that word meant. You were full of life and you quickly became one of the main reasons I attended our support group meetings. Girl, you are so dang funny!
When bad shit like this happens to good people like you, I have a hard time accepting it. Everything does NOT happen for a reason. Life can be cruel, unfair, and downright depressing. You never saw it that way, though. You always found the good. I don’t know if I believe in heaven, but I hope that is where you are right now.
I can’t imagine you having many regrets, Laurie. From the looks of it, you didn’t waste a single day on this earth. You lived well and gave your son so many beautiful memories. You’re such an amazing mom. My heart hurts for your family.
I want you to know that, to me, your legacy is in the example you set for the rest of us. It’s as if you had no time for negativity. Nothing was impossible for you; nothing seemed more important to you than living a life filled with joy. Well I hope you know what you’ve started.
PS. These are some of my favorite quotes that Laurie shared to her Facebook page over the years…
OMy everything hurts. I just biked 40 miles today, which is just a little bit further than my longest training ride up until that point….10 miles. For the last couple weeks I could feel summer slipping away from me. As the ride draws closer, it will be more and more important to get long rides in. Don’t get me wrong, 10 miles is better than no miles, but I really should be building up to a 60 or 75 mile ride.
Despite my lack of training, I do actually like biking. I love the peace and quiet of the road and the smell of the trees. It’s mindful. And since I have owned this bike, there has been one thing that has been intimidating me and it’s not hills….it’s the group ride organized by the local cycling shop. I have watched countless emails come through about the Sunday group ride. It’s usually between 30 and 40 miles, a pace of about 16mph, and the route follows the absolute best country roads in Warren County.
It sounds great, but I was really nervous that I wouldn’t be able to keep up. I don’t mind subjecting myself to long, clumsy rides, but I hate the idea of falling further and further behind until I can’t even see them anymore. Or worse, making everyone wait (which, technically, they are not obligated to do because this is not a ‘no-drop’ ride, this is the Big Leagues!)
What ended up happening is, as soon as we rolled out of town we started to climb. It was a big, never ending hill (a 500ft climb for the first 2.5 miles). This separated the pack into two groups. The competent, and me. But actually, it wasn’t just me, there was a very nice cyclist that hung back with me so I wouldn’t get left behind. By the time we caught up to the group, where were resting at the top of the hill, it was clear that this wasn’t going to work exactly as planned. Fortunately for me, this saint of a cyclist was willing to go at my pace! Yay! So I had a riding companion! It’s so much more fun to ride with someone, than by yourself. It’s also safer. But most importantly, it makes the miles go by faster, so I was grateful.
Once I decided not to feel guilty about being ‘The Slow One’, I had a great time. Not many people know how beautiful rural New Jersey is. Here is a photo of the type of scenery you can see from the bike. I didn’t take this, but you get the idea.
It may remind me of Minnesota, although, MN doesn’t have so many hills. Makes for great training rides! Uffdah. I was so pleased that I made it back in one piece. Now I need to keep pushing. What is nice about biking is that you can build muscle and endurance relatively quickly, so there is still time for me to catch up. My lungs and my heart seem fine, it’s just my leg muscles that want to give out. I am guessing part of the issue is that I’m still rocking the pedal cages, instead of proper clip-ins. It means my strokes are less efficient than they could be. Cycling is so expensive, so I was trying to hold off until I really understood what I needed.
Anyway, I’m still having fun and that is what is most important. You guys. August is the Sunday of Summer. I’m already getting the September vibes with the nights being cool and dry, the noisy locusts, and the woods smelling like mushrooms. Why does it seem like Summer is too short and Winter is too long? And time, all together, passes too fast.