Today is day 1 of my birthday month and Breast Cancer Awareness (BCA) month. I probably don’t have to go into detail about why I generally don’t like sharing this particular awareness month with my birthday. Still, this year I am doing something different to hopefully set a new tone! I am fundraising for two incredible organizations doing two very different things for the breast cancer community. I am a state captain for the Metavivor #lightupMBC campaign, and I am dancing my way down a runway for Runway4Recovery. I have linked the fundraising pages for these events just above this so that you don’t have to keep reading if you aren’t interested in the story. Otherwise, read on and see why I encourage you to donate to one or both of these organizations this October.

#LightUpMBC / Metavivor

Three years ago, on October 13th, I went to the first annual #LightUpMBC bridge lighting in Portsmouth, NH. It so happened to also be right after I was diagnosed, but most folks didn’t know it yet. I didn’t know anything about the organizer, Laura, or the woman that was the inspiration, Jess, but I knew there was an MBC connection. It was beautiful and touching, the whole thing. The memorial bridge looked so pretty lit up with those three MBC colors.

#LightUpMBC isn’t just a little NH thing any longer — it is international! In three years, my now friend, Laura Inahara, has grown this campaign in partnership with Metavivor to reach all 50 states and across the world. There will be at least 225 landmarks that will light up on October 13th. Some of them will even be lit up for the whole month of October. Last year the campaign ran a virtual live event for the first time and raised money for Metavivor.

If you don’t already know why I support Metavivor, please check out their website. Long story short, the only way we will find a cure for breast cancer is if we fund the research to learn more about MBC. We cannot blindly “raise awareness” by wearing pink stuff, buying socks with pink ribbons, or provide funding to organizations that give little time or resources to folks living with MBC. Metavivor raises millions of dollars each year to provide research grants that center explicitly around the MBC patient. Once we find a cure for stage IV breast cancer, we have a cure for all stages. Remember that MBC/Stage IV is the only type of breast cancer that people die from.

So what’s happening this year? Another virtual live event on October 13th. It’s bound to be spectacular! Special musical guests Kristin Chenoweth, Tom Morello, Rob Thomas, and JD Eicher will appear. There will also be live coverage at various landmarks, and those living with MBC will share their stories throughout the night.

Maybe attending the live virtual event isn’t for you, or you can’t make it to see any of the lit-up landmarks, NO PROBLEM! You can still participate in this campaign by donating funds here.

Runway for Recovery

Next up, I want to highlight a new-to-me organization called Runway for Recovery (R4R). One of my cancer mentors introduced this organization to me, and I am nothing but impressed with what they are doing. The founder, Olivia Boger, was personally touched by MBC when her mom was diagnosed and later passed away from the disease. Olivia wanted to keep her mom’s memory alive by giving back to this community in a significant way.

R4R provides grants for those families that have lost a caregiver to breast cancer. These grants provide support for families getting back on their feet after their loss — that looks like social work/therapy for those left grieving, help with bills, covering sports fees or camp fees, grocery shopping, housing or school costs, childcare, house cleaning, prepared meals, you name it. The grants are structured to provide support for a whole year while the family gets back on to their feet. Another remarkable feature of this program is that families do not have to apply for these grants right in the wake of their loss; there is no timeline on when a family can be granted the resources. If a family shows a need for support a year or five years later, they are still eligible.

I am honored to take part as a model this year in R4R’s largest annual fundraiser. This October 22nd, I’m going to dance down the runway in hopes of inspiring the audience to give back to children who have lost their moms to breast cancer while also sharing my story. This cause is near and dear to me. By giving to Runway for Recovery, you are directly helping me on my mission!

I am not naturally a fundraiser, and asking for money is hard for me, but I also know some incredibly generous people worldwide. You have come to me to ask me how you can help, and both of these causes are worthwhile for the reasons I shared above. One is helping the greater MBC community help find a cure. And until we find a cure, the other one is there to help families after they have lost their precious mother, sister, daughter, aunt, or loved one.

Join me in celebrating my own 3-year cancerversary/37th birthday fundraiser campaign by donating today. I love you all very much!

Heads up: This post isn’t all rosy and pretty; it ends well though. I know I present as a strong and capable woman (mostly I am that), yet there is a pragmatic side to this whole story that I don’t delve into often because it’s dark, hopeless, and just downright terrifying. Happy Reading 🙂

Do you remember way back when I was first diagnosed, what I said the median survival was of someone with MBC? Three to five years. It’s not a lot. And if you’re thinking, “but Hannah, not everyone with MBC has the same risk/outcome,” you would be right. MBC isn’t one single type of breast cancer, and yet only 28% of people with MBC (all types) live past 5 years.

Why then am I telling you all of these things again?? Because I MADE IT TO 3 YEARS BABY! Yup, September 18th marked the 3rd anniversary of being told news that would alter my life forever. I am still in that clinical trial that I started in October 2018. This is still my first line of treatment, and my cancer is behaving well (small and stable) for now. THAT is something to celebrate, and yet the statistics are against me.

It’s impossible to reach this point and not think, “these could be my last 2 years.” I told you this was going to go dark. If you have heard me talk about my friends I have lost along the way, you know I call cancer an “inconvenient bitch” because it doesn’t take anyone’s plans into consideration. You could be fine one day and three months later be gone. Doctors can’t explain it; we cannot cure it; cancer is smart and will take you when it wants to.

But when I feel those dark and heavy thoughts encroaching in on me, I say NOT TODAY CANCER, and I attend my support group, have a therapy session, meditate, play with my kids, snuggle my family, hang out with my friends, or do anything that brings me closer to LIFE. Oh, and I say fuck a lot too, it helps, trust me. I am not fighting a battle, I am trying to manage this ever-consuming job I call MBC while also being a mom, wife, daughter, sister, and friend.

Let’s take a deep dive into the last three years. A little walk down memory lane. I have endured 115+ days of appointments, blood draws, scans, etc. Sometimes these days are quick, most of these days are long, and all of them interrupt my life and remind me that MBC is here to stay. Have I told you there is no cure?

As the oncology world calls, I am currently on cycle 51 of continuous daily medication, targeted therapy. Additionally, I take medication for my thyroid that stopped working due to my immunotherapy treatment and two meds for GI issues caused by the abemaciclib. If I don’t take them, I have chronic GI inflammation. There is also anastrozole to block the production and uptake of estrogen in my body. And a handful of other meds for pain or sleep or anxiety. That’s over 10,700 pills.

As I write this today, I feel pretty decent physically; I am hopeful that I will be an outlier; I am grateful for my medical team and the medications I am on; I am forward-thinking; I am resilient; I will keep going.

And the highlights from 2018-2021

• 1 genomic sequencing
• 2 brain MRIs and 7 total MRIs
• 1 ultrasound
• 40 CT scans
• 3 X-rays
• 6 pathology reports
• 2 surgeries
• 2 colonoscopies, 1 endoscopy
• 3 specialists (orthopedic, GI, and endocrinologist)
• 31 infusions (22 pembrolizumab infusions, lupron injections, and zometa every 3 months)
• SO MANY HOURS on the phone with insurance…..schedulers, nurses, pharmacies, etc.

Here is the best part of my MBC life: YOU. When my days are dark, you fill me up. Thank you community, for being there for my family and me through all of this and beyond. Because of you, we have been blessed and comforted in countless ways. I cannot quantify the effects of your generosity. Where cancer has changed or taken away from our family, you have inserted your kindness, joy, and love so that we are not left alone or without. It is immeasurable the number of meals that you have provided for us, the cards and care packages you have sent to me, the prayers and good energy you have lifted up for me, the hours of babysitting or carpooling you have covered for us, the money that you have raised and given to our family to make memories and help us breath easier for those early days when I was no longer working. Indeed, YOU are my highlight of the last three years. My kids and husband are pretty great too 😉

To celebrate this three-year milestone, take a deep breath in, and come back here tomorrow — it is the start of breast cancer awareness month and my 37th birthday, and I’ll be sharing how you can think beyond pink and honor me along the way.

XOXO

Hello all of loyal and new blog followers 😉 It has been a while since I have written to you on here, so let me cut to the chase: the great news is that my cancer is still behaving on the same treatment line I have been on since 2018. That’s a freaking miracle. No really, it is. More on that though in another post.

I am in the process of writing up at least 3 posts that I hopefully will get out and published in the next 3 days. Aren’t you excited?! Just to give you a preview: why fly fishing with cancer survivors is awesome, cancerversary #3, and finally breast cancer awareness month and why you should donate your money to these causes this month and not with other PINK campaigns.

Thank you for waiting so patiently! You all are much better at waiting than me.

XOXO

You know, I have been seeing a lot of photos and posts online reminiscing about life a year ago — life B.C. or Before COVID — and how life might look in another year. One year ago today our schools shut down because of COVID and I went out to dinner with two friends as we joked it would be our last hurrah for a few weeks, a month or two at most. Did people really need that much toilet paper? And here we are 365 days later, still in the midst of this pandemic. We have loads more information and a vaccine rolling out, but dang, I never thought it would last this long.

For me though, B.C. doesn’t have anything to do with COVID; It stands for Before Cancer. Five years ago this month I was diagnosed with stage 1 breast cancer.

I don’t talk a lot about that diagnosis anymore. Maybe it’s because celebrating years out from diagnosis isn’t the same for someone with MBC as it is for someone with early stage cancer.

Let me explain. Those with early stage disease usually “celebrate” being done with treatments, or surgeries, or milestones that shows they kicked cancers ass. They celebrate that treatment worked and they can now return back to an almost normal life. Sure, there is trauma to work through, and bad days, and recurrence scares, but mostly you conquered! Wahoo! Seriously, you should celebrate.

For me cancer-versaries are such a mixed bag now. They are another day to celebrate life and being alive. I thank my lucky stars everyday for that. But it also, sometimes, feels like one more day closer to the end. I won’t ever celebrate being done with a treatment because moving on from a treatment means it has failed me. Remember, there are a limited number of treatments I will have in my lifetime. I won’t celebrate the completion of surgeries or radiation because both of those treatments for an MBC patient are a means to slow cancer growth, not to cure it. The farther I get from B.C. the more I realize life can never go back to what it was. There is no returning. It’s only right now and forward. There is an After Diagnosis or A.D. for me and I think that a pretty positive way of looking at MBC.

I was given an opportunity this week to reflect on my life B.C. It’s sort of strange to think about life like that; letting some traumatic thing be the center of your timeline. I had put career plans on a slow track in order to have kids and to be there in their early years. I wanted to be both a good librarian and a good mama, and ultimately the mama role would be my first priority.

B.C. Hannah was a bit more naive and less jaded. And before I was MBC Hannah was definitely one of those early stage survivors I described above. When my 1 year cancer-versary came up in March 2017 I had a lot of anxiety, a total body reaction, but also a reflective “hell yeah, I did it” thought process. I wanted to keep celebrating my cancer triumph for years to come. I always knew MBC could theoretically happen to me, but the likelihood was small. Stats were on my side, so in 2017 and the first half of 2018 we traveled and did all those things we were on track to do B.C. I began working again and was finding my way back into the library world. But when MBC hit, life paused again.

Honestly, I remember little from that time. I remember so many trips down to Boston, but life around year 0 MBC is hazy.

I can’t pretend that I am enlightened now and have these big wise life lessons to share. I think most days I strive hard for extraordinarily normal. It’s different than the normal I was trying to get back to after my first diagnosis. This normal is largely for my kids and is forward thinking. They deserve to have as many normal kid experiences as possible. They also get to have some pretty spectacular not so normal experiences too. But in my framework of day to day extraordinarily normal the extraordinary part is for me. It’s those little moments I try to appreciate that mean nothing to anyone expect me and probably my husband. It might be noticing the smell of my daughters hair after playing outside. Or maybe the way my son lights up as he discusses yet another chairlift. It’s hearing the same made up song being played on the piano for the umpteenth time and hoping that music will stick with my daughter forever. Or it could be appreciating how my son crawls the same way today as he did when he was 10 months old. At times complacency settles in, but it doesn’t last long. It can’t. I am reminded how very short and precious life is constantly. And I know I am not alone in these thoughts.

I think the reason why I bring this all up is because I hadn’t thought of life B.C. in a long while because I keep trying to focus on the here and now and some of the future. When I think about COVID I also try not to dwell on what life was like a year ago, except as a tool to say: we have come a long ways and there is still more to come.

COVID has given cancer muggles some insight into how it feels to live in uncertain, sometimes scary, and often confusing times. When you reminisce about your life B.C. think about how you want to remember this pandemic AND keep moving forward with a new knowledge of the world. It’s a rare gift, I think, to be given a B.C. and to know there will be A.D. (well in terms of COVID, and A.C.).**

I have lots of A.D. left to live. Lots of things I want to learn. And lots of growth to do. We have been in the same storm now, where is your ship going? What’s your A.C. going to look like?

**Now I am not saying cancer is a gift. I am saying the lessons I have learned are the gifts**

I don’t think I have really said much about my hearing loss. It started with tinnitus that I noticed after my early stage treatment, but figured that it wasn’t terrible enough to do anything about. Everyone deals with some form of it right? But over the years it became louder and more noticeable, and I noticed that I was saying “what?” a whole lot more to the people I was trying to have conversations with, especially my kids. It was also worse in bars, restaurants, sporting events, anything with background noise. Masks made hearing people even more difficult too because I tend to watch people’s mouths to help me decode what they are saying.

At the end of December I went for a hearing test. The hearing test confirmed what I suspected, premature hearing loss, specifically at higher frequencies (i.e., children’s voices, women’s voices, and birds), and worse in my right ear. Just to make sure nothing cancery was growing in my brain and causing the hearing loss I had a brain MRI.

To be honest, I was scared. Brain mets aren’t super common in hormone positive, HER2 negative breast cancers, but they can still happen. And brain mets aren’t easily treated and in many cases once found they can accelerate one’s life even more so than just having regular old stage IV breast cancer does. So I was spiraling a bit — praying that there was no mass in my brain, praying that there would be some other explanation.

Good news, no brain mets. My brain in perfectly “unremarkable.” In Cancerland you want unremarkable. Boring is GOOD.

So I went back in to the ENT today to find out his thoughts on my hearing loss. He suspects that I have ototoxicity from either chemotherapy or a strong antibiotic, but probably the chemotherapy. At this point the tinnitus and hearing loss isn’t more than a distraction and somewhat annoying. I’ll go back in a year for another hearing test, and if my hearing loss is stable then I’ll return in two years for follow up. No need for hearing aids for now!

It is confirmed that I am officially aging prematurely thanks to estrogen blockers and surgical menopause, and treatment in general. I have achy joints; dry thin skin, hair and nails; aging eyes; and now hearing loss. I keep telling people I am a 36 year old with a 68 year old body. But aging is a gift I am happy to have.

Oh and since it had been so long since I got dressed up in anything besides jeans or stretch pants I decided I wanted to look like an adult today when meeting with my ENT. He’s a sweet old guy that has his initials embroidered on his dress shirt pocket — it was the least I could do 🙂 I did my hair, put on some makeup, styled myself up! Just because it doesn’t happen often anymore I captured a picture.

**I wrote this 3 weeks ago, but forgot to edit it and hit post**

I went to DF yesterday, and when I sat down for my blood draw, the nurse only pulled enough tubes for my CBC panel, chemistries, thyroid numbers, and tumor markers. I said, “oh, I’m on a trial,” and she said, “yes, I see that, but today you don’t have any trial tubes.”

Oh okay….. I sort of had a momentary panic because I had never experienced a no trial-tube-blood-draw. In fact, I used to go down to DF every other week, JUST FOR BLOOD DRAWS. It was a 4-5 hour round trip just so they could make sure my body was still doing okay in this trial.

But today, as I was sitting in the chair, port accessed, discussing the week with the lab nurse when I got a call from my research nurse. She said that things would change a little going forward because the trial had been moved into a new phase. From this point on, no new patients will be enrolled in the trial, and those of us still on it (not many) are being granted access to the medications through something called “continued access.”

Let me be completely transparent about this move by the trial sponsor: no more breast cancer patients will EVER be doing this combination of drugs, at least not under any FDA approval. The combo of abemaciclib, anastrozole, and pembrolizumab in the breast cancer setting didn’t garner enough positive and impactful results to cause this study to move onto Phase 2. So yes, it has worked for me; Still, most participants couldn’t continue on this combination of drugs because they either had progression or couldn’t tolerate the side effects (toxicity or quality of life).

As you know, I’m no longer on the immunotherapy, but I still take the abemaciclib and anastrozole. Even though abema and anastrozole are FDA-approved drugs that I could have access to outside of a trial, I am still being followed on the trial; therefore, the trial provides me with the medications so they can collect longitudinal data.

I haven’t gotten all of the information about what this all entails for me, but essentially I have fewer scans and less paperwork to do. I’ll still be followed closely, but the trial required a closer following than most get outside of clinical trials. I will continue to have visits every 3 weeks, but now some of those will regularly be online, and my scans will get moved out to every 12 weeks.

I am continuing to rock all of the dozens of pills I take every day, but I’m tapering off the steroid. I have been feeling good and am looking forward to this holiday season. I have a lot to be grateful for, that’s for sure!

In 2016 I went through chemotherapy. I was told that I would start losing my hair after the first infusion, right around 2 weeks in. So to prepare for that loss I got a really short hair cut. It was cute and spunky and prob not a look I would ever do again haha. And right on time, 12 days after my first infusion I was running my fingers through my hair and a whole lot of hair came out. Then a couple of days later hubby buzzed my hair off in my kitchen with the kids there as a welcome distraction.

I wanted to cut my hair and then shave it on my own terms but the unexpected happened. No one prepared me for the day I would be in the shower and my hair, although shaved, wouldn’t stop coming out of my head. It was physically painful, it was overwhelming, it was traumatic. All of the tiny hairs that were left in my scalp and hadn’t fallen out on to my pillow or in my hats, were now flooding the floor of my shower. I wept. I sobbed. It was just hair I kept telling myself, but that was me trying to rationalize this experience. There is nothing normal about losing my hair at 31.

The next major insult to injury was losing my eyebrows and eyelashes; I felt like an alien. You loose hair everywhere, but the weirdest place to loose hair that know one “sees” is the hair in your nose. My nose was running all of the time. The silver lining was not shaving my legs and arm pits for a good long while.

You might be wondering why I’m telling you about this experience now; why I want to take you down memory lane. I appear to have all of my hair still and I don’t look sick. MBC is a hidden illness for many of us because we look normal and we are doing normal things. But my hair has changed a lot. As it grew back I had curls and I loved it! But today I am reliving that traumatic experience of 2016 every day, in slow motion.

Each time I take a shower or brush my hair, and absurd amount of hair comes out. I know normal hair loss, and this isn’t normal. My ponytail has decreased by about 50% in the last year. Additionally, my hair growth has slowed down dramatically. So I am losing hair at a slower rate than I did in 2016, but it’s still falling out.

It just comes with the lack of hormones, or because of thyroid dysfunction, or as a side effect from my medication, and likely a combo of all of it. I don’t know if it will ever stop or if my hair will ever grown back to the thickness it once was. I expect not. You may never notice the thinning, but I do.

I don’t have a love affair with my hair, but it does make me feel feminine and I know my husband and kids like it. It keeps my head warm and I generally love having hair more than not having hair. I’d like to hang on to as much of it as I can for as long as possible.

Recently though, I decided to order myself a couple of cute hats from Style Esteem. They have a wonderful story so check it out. I am excited about wearing these more frequently as my hair thins. They keep my head warm and they help me to feel feminine. I also have some other tools in my arsenal to cover the thinning when I am not wearing a hat. Having some control over how this disease affects my appearance is nice.

This is just another part of perpetual cancer treatment that isn’t pink or pretty or easy. Collateral damage as we say in Cancerland.

Short and sweet update tonight 🙂

My scan results are showing that the inflammation in my gut is much improved. So much so, that if they would have seen it for the first time today they wouldn’t even be treating it. I’ll be meeting with my GI doc next week to go over the treatment plan going forward but I am hopeful that we will start a taper plan for the steroid. And hopefully that means I’ll be able to get off of the omeprozole soon too. I’d love to get off both of them eventually.

Oh and the cherry on top is that I’m still showing no evidence of active disease. No progression and whatever cancer is lingering around in my body is sleeping and staying quiet.

Thanks for all of the words of encouragement and love!