This Friday, if you’re looking for something to do around lunch time (Eastern Standard Time) I suggest you tune in to Dana Farber’s fundraising event for the Susan F. Smith Center for Women’s Cancers. You need to register ahead of time here: https://www.dana-farber.org/susan-f-smith-center-for-womens-cancers/get-involved/executive-council/

If you decide to tune in (no payment or obligation necessary), you will catch a glimpse of my story. I haven’t had the opportunity to see what they have included from my initial interview, but I hope it does my story justice. The things I was hoping to convey were:

1. I am staying active most days despite having MBC, and will continue to stay that way for as long as I can.

2. I do everything I can to give my kids the most normal childhood experience they can have that isn’t focused on cancer 24/7 without covering it up at home.

3. The mental game is HARD and is harder than my physical symptoms so far.

4. KNOW YOUR BODY because know one can know your body more than you, and take it seriously if you feel a change.

5. I am SO grateful for my medical team that rocks at keeping me going and for being my second family.

Please feel free to share the above link with anyone you think might be interested in knowing what’s going on in the world of women’s cancer research. It should be about an hour and there should be some interesting information and stories shared during the telethon style virtual event. If you tune in let me know your thoughts; I would love to be able to give feedback for future events.

Y’all, I have the BEST news to share with you! And we could use great news, am I right?

When I made my blog post the other day and reported that my scans looked stable that was prior to the final measurement calculations that I usually get with each scan. It was just what my oncologist could see comparing the current scan to my previous scan, no radiologist report. What she could see was no major change so that’s what she told me: stable.

Well, she called me today with the final numbers: I am NED (no evidence of disease)! This is the golden unicorn we all hoped for. We have been crying happy tears off and on today. My oncologist was giddy and reminded me that this is definitely not a common state that she sees frequently.

The measurements only take into account the lungs and lymph nodes that they have been tracking since day one. The bone lesions aren’t measured in this calculation. This is because the trial uses CT scans to track the lesions. Bone lesions are seen on the scans but they aren’t super sharp or specific. We can see them but we can’t SEE them if that makes any sense at all. MRI or PET scans are much better for tracking bone lesions. So because it’s sort of an ambiguous measurement with CT scans we assume that the bone lesions aren’t growing because we don’t see any new ones. But for sure the measurable disease (lungs and lymph nodes) is so small they cannot measure disease on the CT scan. I am so happy!! And relieved. And happy. And relieved. Haha!

I don’t know how long I will be in this space but today I celebrate and I would love to celebrate with you all too. Can you tell me how you’re celebrating this rare, wonderful, lucky, blessed, grateful, joyful, heavenly grace news?

Everything else from the last post still stands. Scans every 9 weeks to track things, telehealth from here on out until things change, side effects from the oral meds, immunocompromised, BUT beyond words awesome-sauce lucky duck NED!

My one request while you read this: grab a drink or something you can indulge in. I have tried really hard to keep things as normal as possible these last few weeks, but one thing that just can’t be avoided is day drinking. Now, I am not talking about having sloppy afternoons, but a beer on a sunny day or a G&T at the sensible hour of 4pm sounds pretty much what a pandemic day calls for. No judgment here folks — it’s just one of the ways Covid-19 has changed things.

Other things have changed too. For instance, we have been eating a lot more meat than we did before the quarantine. I used to make 2-4 vegetarian dinners a week, but I have been lacking in motivation to do much cooking. It takes a lot of motivation to do a lot of things these days and cooking hasn’t been filling me with as much joy as it usually does. So instead I cook meat. It’s fast, it’s easy, no one complains. Another thing that Covid-19 has changed is the sheer amount of time my kids are on a screen each day; schoolwork is online, socializing is online, and games are online. We limit how much “outside of schoolwork” time they are online each day, but it’s so hard when all they want to do is FaceTime or send silly messages to friends that they haven’t seen in weeks. They are missing a normal part of their day being sequestered at home and their little social buckets are dry.

Covid-19 has also changed my cancer treatment plan. I went down to Boston last weekend to get my regular scans done. My hope was that the break from pembrolizumab would allow my lungs to heal and help the pneumonitis to shrink. It didn’t. The inflammation was stable. The cancer also didn’t grow. All in all good news.

I was really hoping that I would be able to jump back into my infusion schedule this week, but we have decided it’s just too risky. We know the cancer is being managed well through my oral medications since it didn’t grow over the last 9 weeks, so the focus has shifted to keeping my lungs from getting worse. Covid-19 poses a complicating factor for me because if I were to catch this virus I could have real issues with recovery since it’s extremely taxing on the lungs.

Two things really cemented my decision to discontinue the pembrolizumab. 1) I have had many more doses of immunotherapy than most people get in their lifetime. This particular drug has been used to cure other cancers and even in those curative environments, they aren’t getting as much of the drug as I had. So yay me, I am overachieving.  2) I am still on the clinical trial. This is very important to me. We know the oral drugs I am on are effective and are working. The wildcard was always the immunotherapy. I feel a duty to help find a cure and being on a clinical trial is my best tool for doing that. We need to know what the long term effects of being on this treatment line looks like, and wouldn’t it just be silly if I dropped out of the trial just to remain on the same oral drugs?

Going forward, I will continue to telehealth with my oncology team for as long as they let me. The exception to this will always be scans, which must take place at Dana Farber. I will continue with anastrozole and abemaciclib for as long as the cancer looks stable, hopefully, that is a very long time.

Thanks to everyone that has been checking in on me and my family. It’s an interesting time right now for all of us.

Please read this:

Unmet Needs for Cancer Patients At the Time of COVID-19 : Goats and Soda – https://www.npr.org/sections/goatsandsoda/2020/03/22/818863524/when-cancer-and-coronavirus-collide-fear-and-resilience

This may be written by someone with stage IV lung cancer but it’s really not all that different than anyone with a stage IV cancer diagnosis in active treatment. We have legit fears and anxieties and we also have resilience and a perspective on this that most people don’t. Do us a favor: stay home.

Xoxo

#stayhome #wecandohardthings #weareinthistogether

Well, hi. It’s a strange time to be living right now, isn’t it? Self-quarantine, isolation, social distancing. Covid-19 is no joke — and right now it feels like the most unwelcome guest that has overstayed it’s welcome by weeks.

Having cancer is also like that. It takes up space in a person’s body — uninvited and sticking around far longer than anyone would like. And like everyone else right now, every ache, pain, cough, fever, whatever makes you wonder, is this it? Do I have this thing now? It’s scary and it’s a total mind fuck. And feeling scared, uncertain, angry, or (name that feeling) is NORMAL.

Please, take care of your mental health right now. It’s so important and I cannot stress that enough. It’s hard when we can’t see the light at the end of the tunnel. When we don’t know when we won’t be trapped inside like caged animals anymore. But something else that’s important: we are all in this together. Yup, you read that right. All of us. Together. Even if we are separated. If you need anything please ask me. I cannot always help, but I like to think I can try to get help your way. I know people 😉

My personal community has been awesome. People are sharing resources, helping with homeschooling ideas as we await our wonderful teacher’s plans, delivering meals and groceries, checking in with calls and messages, and creating virtual spaces to create art.

Because of my “special” designation as a cancer patient in active treatment I get to be extra cautious with my social distancing and isolation. At this moment I am told I need to isolate for a minimum of 30 days. We are on day four. So far so good, but also not perfect. For me the hardest moments are all in the mental game.

I have this unique perspective where I am not that scared of the actual virus. I am doing everything I need to with washing hands, staying home, disinfecting, etc. I am more scared of what is going to happen to my mind. Between homeschooling, housekeeping, and generally keeping my kid’s minds fresh, I don’t have a lot of extra time for me. That seems weird considering the circumstances, but it’s true. And my usual ways of showing self-love aren’t quite so easy with the kids home right now. I love alone time, lending a helping hand, doing a project start to finish, listening to an audiobook while cooking, knitting, going for a hike, etc.

We have a daily routine that’s so helpful at keeping us grounded, but I’m on from 6:30 am until 9 pm with the kids. Some of it is my own doing — for example, we are sticking with our no screen time rule during the school week for now. That applies to me too. Outside of checking emails once in a while that I really don’t respond to until the end of the day I don’t get screen time. But some of it is my kid’s personality. My older child is more self-sufficient and loves alone time. My younger child is very needy still and is a total extrovert. When you have a younger kid that really needs you to be on, it’s so hard to figure out a way to get them to play alone for 20-30 min. so mama can have a moment of distraction herself. Thankfully my husband came to my rescue today and took the kids outside for 30 min so that I could work on an art project I had started. That felt great!

That’s all tangential to my main point though — Mental health shouldn’t be ignored. I’m seeing that very clearly and I hope you will too.

Now back to our usual programming. Tomorrow morning I have to leave my isolation to get my blood drawn and have labs done. Luckily, I don’t have to go into Boston for this one. Usually, I don’t have a choice for the trial, but we are making an exception here for these weird times.

Blood work will be done and as long as everything checks out okay I’ll get my clinical trial drugs mailed to me before the weekend. No worries my friends, I’ll be extra careful out there.

My team at The Farbs has been great. With each phone call, they have been patient and flexible. I am sending them lots of good vibes as I am sure the coming weeks will be hell in Boston. I’ll be down there on April 5 for my next set of scans. I’ll let y’all know that goes!

Please continue to take this seriously for a while longer. Wash your hands and avoid crowds or gatherings. There are lots of folks that have compromised immune systems that you probably don’t know about — help keep us safe!

Well, hi. It’s a strange time to be living right now, isn’t it? Self-quarantine, isolation, social distancing. Covid-19 is no joke — and right now it feels like the most unwelcome guest that has overstayed it’s welcome by weeks.

Having cancer is also like that. It takes up space in a person’s body — uninvited and sticking around far longer than anyone would like. And like everyone else right now, every ache, pain, cough, fever, whatever makes you wonder, is this it? Do I have this thing now? It’s scary and it’s a total mind fuck. And feeling scared, uncertain, angry, or (name that feeling) is NORMAL.

Please, take care of your mental health right now. It’s so important and I cannot stress that enough. It’s hard when we can’t see the light at the end of the tunnel. When we don’t know when we won’t be trapped inside like caged animals anymore. But something else that’s important: we are all in this together. Yup, you read that right. All of us. Together. Even if we are separated. If you need anything please ask me. I cannot always help, but I like to think I can try to get help your way. I know people 😉

My personal community has been awesome. People are sharing resources, helping with homeschooling ideas as we await our wonderful teacher’s plans, delivering meals and groceries, checking in with calls and messages, and creating virtual spaces to create art.

Because of my “special” designation as a cancer patient in active treatment I get to be extra cautious with my social distancing and isolation. At this moment I am told I need to isolate for a minimum of 30 days. We are on day four. So far so good, but also not perfect. For me the hardest moments are all in the mental game.

I have this unique perspective where I am not that scared of the actual virus. I am doing everything I need to with washing hands, staying home, disinfecting, etc. I am more scared of what is going to happen to my mind. Between homeschooling, housekeeping, and generally keeping my kid’s minds fresh, I don’t have a lot of extra time for me. That seems weird considering the circumstances, but it’s true. And my usual ways of showing self-love aren’t quite so easy with the kids home right now. I love alone time, lending a helping hand, doing a project start to finish, listening to an audiobook while cooking, knitting, going for a hike, etc.

We have a daily routine that’s so helpful at keeping us grounded, but I’m on from 6:30 am until 9 pm with the kids. Some of it is my own doing — for example, we are sticking with our no screen time rule during the school week for now. That applies to me too. Outside of checking emails once in a while that I really don’t respond to until the end of the day I don’t get screen time. But some of it is my kid’s personality. My older child is more self-sufficient and loves alone time. My younger child is very needy still and is a total extrovert. When you have a younger kid that really needs you to be on, it’s so hard to figure out a way to get them to play alone for 20-30 min. so mama can have a moment of distraction herself. Thankfully my husband came to my rescue today and took the kids outside for 30 min so that I could work on an art project I had started. That felt great!

That’s all tangential to my main point though — Mental health shouldn’t be ignored. I’m seeing that very clearly and I hope you will too.

Now back to our usual programming. Tomorrow morning I have to leave my isolation to get my blood drawn and have labs done. Luckily, I don’t have to go into Boston for this one. Usually, I don’t have a choice for the trial, but we are making an exception here for these weird times.

Blood work will be done and as long as everything checks out okay I’ll get my clinical trial drugs mailed to me before the weekend. No worries my friends, I’ll be extra careful out there.

My team at The Farbs has been great. With each phone call, they have been patient and flexible. I am sending them lots of good vibes as I am sure the coming weeks will be hell in Boston. I’ll be down there on April 5 for my next set of scans. I’ll let y’all know that goes!

Please continue to take this seriously for a while longer. Wash your hands and avoid crowds or gatherings. There are lots of folks that have compromised immune systems that you probably don’t know about — help keep us safe!

Stable scans and heading into cycle 20! Yay! 🖐🏽🖐🏽🖐🏽🖐🏽Relieved and grateful! Keeping an eye on some inflammation in my lungs but for now I am asymptomatic in that area. Let’s hope and pray it just clears up on its own. Thank you for the texts and PMs this week. If you have a drink tonight do a little toast for this good news!

https://www.instagram.com/p/B2kuNW0nOGV/?igshid=jxcfzihcwr5k

One year ago my life was turned upside down. I was driving down to Boston in the middle of a rain storm ⛈ that was the remnants of a hurricane Florence when I got the call that my MRI showed a large tumor growing on and behind my sternum, and that the imagining also picked up on other worrisome spots on my vertebrae. This day, and that whole week is seared into my brain. But you know, 12 months later I am okay today. I still have cancer and I may be putting up with a lot of side effects, but I have got my kids, my husband, my family, my friends, and you, my community ♥️. You all have lifted me up, supported me in big and small ways, shown me love and comfort, provided me laughs, tears, and loads of swearing. Thank you 🙏🏼 for seeing me through the hard days. Thank you for continually being there for me. I didn’t know if I had strength to do cancer 2.0 but I quickly realized that I couldn’t do it alone or even by depending on just my family. I need you all! So please accept my gratitude and love 💕 in return. Xoxo 😘