Well, I finally have a little bit of good news to share with you 🙂

Yesterday I had my blood work done. Three out of four liver enzymes that are measured are either in the normal range or very close to the normal range. This makes me very happy!!! The 4th one is still elevated (like a lot), but it stayed stable which is a good thing.

My red cells apparently didn’t get the assignment and continued to decline so, I am sitting in the hospital now getting a blood transfusion in Denmark. Viking blood to the rescue! Things are so different here than at Dana Farber. There are no infusion pumps for this transfusion, no extra fluids, just gravity and donor blood. And apparently ports aren’t common here, so when I said we could use that for the transfusion the nurse helping me said she hadn’t ever accessed one, but would like to learn from her colleague with more experience. I said that was great (I’m used to the teaching hospital methods from DF/BWH)! The more experienced nurse did a great job and accessed it without any issues. Notice the lack of dressing over the port access. Apparently that’s not a thing here!

My neutrophil count (essentially the number we use to measure my how immune compromised I am) is very low, but that’s to be expected on this medicine. I will keep washing my hands and avoiding sushi (sad). Hoping to see this number go up though in the next 10 days so I don’t have to worry about wether or not I can get my next infusion. If the neutrophils are too low, treatments are held. I want to stay on schedule since the first round has already had a positive impact on my liver enzyme numbers.

So all in, it was a decent report. I’ll get one more blood workup done next week, then we head home. My next infusion will be January 31 if all goes according to plan…

Three months ago I started a new treatment and I had high hopes that I’d be on this treatment for a while. I heard many stories of success and based on my previous treatment experience I am an “exceptional responder” — emphasis on exceptional 🙂

In November I had GREAT scans, almost a complete response, meaning the liver lesions were nearly gone and the ones that remained were tiny. My bone lesions were mixed with stability, shrinkage, and a little growth, but the important part was the liver response. My blood work also looked good. It was all signs point to the right direction, except I was starting to experience fevers again. Not as frequent or as intense though. My doctor in the U.S. said she wanted to see me at least one more time before we returned home at the end of January, just to make sure everything remained on course. I was determined to make my 6th trip back to Boston, in December, my VERY last before our return home. What’s the quote: the best laid plans..? yeah well as always, I am reminded I have no real control over cancer.

I returned in December, with fevers more frequent and my blood work looking a lot less ideal than I wanted. Like really not good. This was all a huge surprise because the November scans looked so good. I always say things with cancer seem to move so slow until they happen fast. I returned to Denmark with two units of blood, orders to get a liver MRI ASAP, and weekly blood work ahead of me.

My team in Denmark informed me last week that my liver MRI showed growth in the previously remaining liver lesions and a lot of new ones. This news just about crushed me. I felt defeated, scared, and sad. When a vital organ isn’t cooperating, your thoughts go in all directions, and not usually in a good way. My grand hopes for Xeloda to work for a while were dashed in an instant. Three months…that’s all I got from this treatment. Not even enough time to hold me until the end of January when we return to the US. I had almost four years on the last treatment and not even four months on this one.

My Dana Farber team quickly got to work, over the holidays no less, to create a new plan for me. I am returning in a couple of days to start a new treatment as quickly as possible. This time I’m moving on to an IV chemo — Enhertu. I’ll have to write more details later on the medication itself, but for now know that this is a targeted chemotherapy that comes with all of the hard side effects that chemo comes with. I haven’t done chemotherapy since 2016 when I was in treatment for early stage disease. I am scared and also grateful. Scared for the side effects, the impact it will have on my family, for this major chapter change in my treatment. But SO grateful for this drug that was recently approved for my subtype of cancer. Timing could be better, but I have hope that this drug will have the intensity I need to get the cancer under control. Also, so grateful for the Runway for Recovery team and that grant they gave me. Trip seven will be in the books soon and I can’t express how much less stress I have had to shoulder with their emotional and financial help.

A friend reminded me of my Runway video the other day by quoting my words. Cancer doesn’t get to win today and it doesn’t get to win tomorrow. I get to make that choice. I cannot control how my body will respond to the treatment, but I can control my attitude and how I live my life.

To distract us all from the hard days ahead we have headed up to Norway, where I am writing this post now. What a beautiful country with awe inspiring fjords, beautiful snow, fun trains, and kind people. I have enjoyed snuggling my kids, seeing smiles on all of us, and experiencing the natural beauty of this part of the world.

I may not be looking forward to the next treatment steps, but I know I don’t have to face this alone. I am heading back to the U.S. with the knowledge that I have family and friends at the ready to support me through this next step. For now, keep living intentionally and don’t let the hard stuff (the fear) take control.

Written in September 2022

I am so grateful for all of the many emails, cards, text messages, DMs, etc that have come through to me over the last two weeks. Y’all never let me down or let me feel alone in this world.

If you didn’t catch my “stories” update last week let me inform you that I am feeling SO much better. I started the new meds almost 3 weeks ago and about a week ago I was able to stop taking pain relievers and fever reducers around the clock. My bones are not hurting (with the exception of my hips, but that’s minimal) and my fevers are gone completely. My oncologist didn’t think that I would start to feel relief until cycle 2, but I felt it in cycle 1. HOORAY!

I start my second cycle of Xeloda next week. The side effects have been very minimal so far, but some of them, like hand food syndrome, are cumulative so I still need to be diligent on my preventative care and keep an eye on things.

I was just in Boston this last week for my liver biopsy (results coming next week), blood work, and normal oncology check-ins. The biopsy went well and it was a lot less painful than I thought it might be. Blood work is trending in the right direction with tumor markers stable, red blood and hemoglobin up (no blood transfusion needed this time), and liver enzymes elevated but not terrible.

In two weeks I will be back in Boston for a VERY quick trip to check-in with blood work and oncology, plus I will be walking again in the Runway 4 Recovery show. I am very excited. This morning I picked out my runway outfit and I cannot wait to reveal it while dancing down the runway.

If you remember last year I fundraised for them and walked in my first runway show. I had a blast. In the past Runway only funded families that had lost a mother/caregiver to MBC, a much needed and wonderful mission. This year Runway added to that and started granting funds for women (with families) thriving and living with MBC. I am one of those women that has been honored with a grant and I am in AWE of how generous and amazing Runway has been not only with the financial part in the form of this grant, but with their time, energy, support, and love.

Cancer is really freaking expensive, even if you plan well. We planned ahead for what we thought would be three trips back to Boston for my treatments, and now I am facing probably six trips minimum. Two of those trips have been last minute and plane tickets/hotels are really expensive. Runway’s grant has taken this extra financial hurdle off my plate.

Women with MBC shouldn’t have to compromise their hopes and dreams because cancer steps in and messes life up. Andrew and I have dreamed about living abroad our whole lives together and cancer came in and attempted to blow the whole thing up. My oncologist actually asked me to come home. I told her I wouldn’t and I’d figure out how to make it work for me to come back as often as she needed me to. Thanks to Runway’s grant I can focus on my treatment, my children, making our experience abroad exactly what we dreamed (sort of). The stress around the financial burden cancer throws at our family is draining emotionally. Now I breathe a little easier.

Grants can look like different things for different families, and for my family it looks like this. I will forever be grateful to Olivia and the board at Runway for seeing our lofty vision of living abroad, knowing we are trying really hard to do everything right, and understanding that cancer can mess all of that up in a second.

Here is “my video” that will air at Runway. Take care and keep living intentionally!

Part 1: The appointment details

Part 2: The plan

When I read the devastating news of progression, I cried a whole lot. Things were bound to change and I wasn’t happy about it. Could cancer be any more inconvenient or self centered? Didn’t cancer know that my family was living a dream and I didn’t have time or emotional energy to put towards management of this? Cancer is my family’s 5th wheel apparently, uninvited and unnecessary!

What’s the plan though? I am going to be starting a drug called Xeloda (Capecitabine). This is an oral chemo. The last drug I was on wasn’t a chemo, it was targeted therapy, so it worked directly inside the cancer cell itself and stopped a cascade of events from happening, which stopped cell division. Chemo on the other hand kills rapidly dividing cells, it doesn’t discriminate cancer cells from regular cells, which is why it’s not targeted therapy. I’m still doing my own research on the drug, but this chemo offers a better quality of life than IV chemo because of how it works in the cells.

The side effects will be similar to those of my last meds, but will come with a new one called hand foot syndrome, which is like extreme dry skin and sunburn on the palms of hands and feet. There is treatment for hand food syndrome, but getting the Xeloda dosing correct seems to be the best management of this side effect. We shall see. Until then, I need to slather loads of aquaphor on my hands and feet to help ward off this side effect for as long as possible. One silver lining of this chemo is that I won’t be losing my hair. Yay!

This course of treatment looks like two weeks on the oral meds (twice a day) and a week off. Three weeks to a cycle. Now because it’s a new to me medication and we don’t know how I am going to do on it, I’ll have to be back in Boston for a few days every three weeks. That’s a lot. Like twice as much as I was planning on being back for. My first visit back will also include a liver biopsy. This is because my doctor thinks that the cancer must have mutated to become resistant to the CDK4/6 drug I was on and thats why I had become symptomatic so rapidly. She wants to find out what we are dealing with, maybe find the mechanism of resistance or the mutation itself. So this trip back will likely be a long one again because I’ll need to plan for the biopsy and recovery in addition to my normal oncology appointments.

Right now, insurance is being tricky. I have been trying to remain patient with them, but today I’ll be making calls to find out what the hold up is on getting my meds. Being off treatment is scary and I just feel bad. My oncologist said that probably by cycle 2 I will start to feel some relief from my pain which would be awesome. I’d love to quit relying on acetaminophen and ibuprofen around the clock.

Now, Xeloda is a fairly old drug. It’s been on the market for a while and there is a generic available. It was being used often before CDK4/6 inhibitors were released. The success of CDK4/6 inhibitors sort of shadowed the success of Xeloda, so the body of research isn’t as abundant as the body of research for CDK4/6 inhibitors. That being said, many people have had success on Xeloda for months to a couple of years. I have hope that because I responded so well to abemaciclib (a CDK4/6 inhibitor) that I will also have a good response to Xeloda.

This is anecdotal, but most of the time I don’t see second or third and so on treatment lines working for patients longer than their first line. It can happen, but usually that first line of treatment sets the stage for how a patient will do going forward. I am hopeful this will carry me for a little while. I would love to get 12 months out of this drug. And then, when this one runs is course, because it will run its course, I would love to go on another trial if I am eligible. I really do feel like it’s what I can do to give back to the MBC community so that some day we can treat this disease like a chronic illness rather than a terminal disease.

Part 1: The appointment details

Part 2: The plan

Last week was, as my friend put it “a shitty fucking week.” I was back in Boston only one week after my last visit, this time with an arsenal of appointments that were going to give me answers as to why I was experiencing fevers, a cough, and now near constant aches/pains. I was having a scan to look at my bones, a scan to examine my liver, an appointment with an infectious disease doctor, an appointment with a pulmonologist, blood work and more blood work, and a visit with my own oncology team. It was a lot! On top of this, I didn’t have Andrew with me, but I wasn’t alone — friends came from NH and MA to be with me even when I didn’t know I needed someone. That part was so nice. 

Tuesday was my longest day with most of my appointments at the Longwood Dana Farber, but one scan at the Chestnut Hill Dana Farber in the middle of the day. My friend was there though, to drive me back and forth, and all over Boston if I needed it. I started at Longwood, went to Chestnut Hill, and then back again to Longwood. 

The specialists I met with had looked at my chart and notes and had spoken to my oncologist before I arrived. After talking to me, the infectious disease doctors decided to rule out any type of tick related illness. Living in New England definitely comes with its share of terrible tick related illnesses that go beyond Lyme disease. Turns out, I don’t have any infectious diseases. Great, thats a lot of things ruled out. The pulmonologist ran through a lot of questions and took me for a walk with an oximeter. He agreed with the what we saw last time I was there, I have strong lungs. But one thing that came up was my heart rate — literally. My resting heart rate was 133. That’s really high. And when I was walking it was in the 150’s. I was getting winded, but not short of breath. I was coughing from time to time, but it didn’t seem to have anything to do with my lungs. The pulmonologist said he wanted to rule out at PE, or a blood clot, before I flew again. The likelihood of a PE was low, but they are very dangerous. Okay, that’s good too, more information.

The scans I had on Tuesday were going to hold my answers though, I knew that. So of course when the radiologist report was released to my patient portal, before I saw my oncologist, I read them. I can’t wait, I’m way too impatient. And I was right, the bone scan showed old bone lesions that were active and a handful of new lesions in my skull, scapulas, hips, and femurs. And that freckle, only a week before that was on my liver and was undetermined by CT to be metastatic or not? Yeah, that turned out to be a lot of liver lesions, ill-defined and spread throughout both lobes. BOOM! Progression. I was shook. 

As much as I knew this would be coming someday, I wasn’t really thinking someday would be now. My last scans before I left for Denmark looked great, so how could this all happen so fast? Those fevers started at the beginning of July, but to have that much progression while on treatment seems crazy! My oncologist thinks the liver lesions were brewing for a while and that the CT never picked them up. My previous bloodwork didn’t indicate anything really wrong either because the medication I was on causes slightly elevated liver enzyme levels, which I had had for a few months. And if you remember my tumor markers were increasing for a while too, but if we can’t see something, then we can’t treat something we cannot see. So, as much as there were some signs that something was happening in my body, nothing was an obvious “clean up on isle 9” situation, it was definitely a watch and wait, like a sitting duck. 

Again, friends showed up for me when I didn’t know I wanted or needed them– with welcome distractions of good food, comic relief, a listening ear, and thoughtful conversations. I am okay with being alone and I hate being a burden on anyone, so it’s hard for me to say “Yes” when I am offered help. But my friend’s persistence paid off 🙂

On Thursday I went in for my oncology appointment. Dr. Tolaney said first thing “Lindsay (my NP) and I discussed and we think you have probably looked at your scan results already.” Yes, they know me, they know I’m not passive when it comes to this stuff. So instead of delivering the news of progression to me, she jumped right into a treatment plan. I stopped her a little while into the conversation and asked her to go over the scans because although I knew I had progression, I wanted to have my hand held and for her to slow down. This was happening really fast!

She slowed down, answered my questions, but ultimately it came down to this: something happened quickly in my body and we need to get the cancer under control as soon as possible. The treatment she advised me to start will get me back on to treatment ASAP and it will allow me to be in Denmark most of the time. I am off my trial and back into the standard of care model, for now. 

There’s a lot of minutia that I won’t go into here, but I am still waiting on those meds. I hated leaving Dana Farber without them. Insurance is being its own beast and now that I am off trial they will have to start paying for things like medications, scans, bloodwork, and biopsies. As much as I hate the cancer battle metaphor, I believe that dealing with insurance is a battle and really becomes a part time job. So, as I am writing this I am still off treatment and I am still experiencing fevers, a cough, and pain. Things are in the works to hopefully change that very soon.

Remember that racing resting heart rate? On Friday morning, I had another CT to rule out the PE, all good there. I can fly again. But it turns out I was anemic. Racing heart, major fatigue, and dizziness with physical exertion, but breathing just fine? Those are all symptoms of anemia, and not the kind where I can just eat more meat or legumes. Dr. Tolaney thinks the cancer may be active in the bone marrow itself which is making it so that I’m not producing enough red blood cells on my own. After my Friday morning CT, I got to have two units of blood transfused. That was WILD and also the benefits have been so amazing. 

Our apartment in Denmark is 72 stairs up, without a lift. Before the blood transfusion I was taking breaks to get up the stairs and by the time I got to the top by pulse was HIGH and felt like I was going to pass out. After the blood transfusion I can take the stairs now without much issue at all. It feels SO good! I have no clue how long the effects will last, but as hesitant as I was to get a blood transfusion, I am no more! Give me all the blood!

There were so many emotions, ups and downs last week. It will take me a while to recover from it all. But one thing I know for sure, I had so much support last week. How can I ever express my gratitude for all of those folks and organizations that stepped up to help me, even when I didn’t know I would need it? Thank you for holding me and riding this wave with me. I appreciate you more than words can express. 

Before we left for Denmark I had experienced a couple of intermittent low grade fevers. I did some last minute blood draws before I left and everything looked normal for me. Since I am immune compromised we figured I just caught a little something others weren’t as susceptible to and everything would resolve on its own. 

Unfortunately, the fevers persisted. Coming on for a few days, going away on their own for five to seven days, and then  they would pop back up again. They would mostly disappear during the day but spike at night. Never high enough to alarm me too much, but always lingering in back of my mind as a low-grade worry. I would get mild chills and feel achy. Tylenol or ibuprofen would reduce the fever and take away the chills and achy feeling. I also developed a tiny baby cough. Just annoying.

When I experience fevers or new pains or anything that I wouldn’t consider “normal” it is like a little shadow that reminds me that I have this part of me that I have unsuccessfully hidden away. I know it seem weird, but I find myself wondering why I haven’t unwritten this part of my story. And damn it, that makes me really frustrated. I don’t want to be fragile or to take it easy. I have spent a lot of time listening to my body and fevers tell me I should rest, but my heart says don’t stop. I push on as best as I can, remind myself I have a really cool adventure to live. 

As the fevers kept happening we kept doing our thing. We kept living. We arrived in DK, traveled to the UK for 10 days, we moved into our apartment, we welcomed our first visitors, we arranged for the kids to go to school, and we explored our new home. 

I kept thinking that coming to Boston for my appointments would definitely give me answers. I was sort of looking forward  to it because as hard as it was to leave the kids and miss their first day of school send off, I knew I needed these appointments. I needed answers. 

My oncologist had thought that the scans might show obvious progression because she figured I might be experiencing something called tumor fevers. But the scans were not definitive that there was progression. So I might be experiencing tumor fevers or I might not. She thought okay if the scans aren’t definitive, surely the blood work will show an infection or something obvious. Again, nothing definitive. 

The CT radiology report said that maybe there was some new boney lesions, but it’s not certain because sometime when the bones are healing they also illuminate. It also said that there is a tiny spot on my liver that wasn’t there before. But too tiny to say if it’s anything cancery or not. Remember CTs are good at seeing pretty substantial changes, but not fine or small changes. The blood work said that my liver enzymes are elevated, but only just a little. The ground glass that I have had in my lungs is stable, unchanged for the last couple of years. But still I have this weird cough. So there in lies the mystery. 

If I wouldn’t have been having these fevers I might have been put on a watch and wait protocol and maybe we would have moved my scans up a little. But the unexplained fevers don’t make my team feel good. My oncologist wants to get to the bottom of what’s going on. 

So she ordered a urinalysis and two blood cultures to check for infection and a pulmonary function test to check my lung function. I took care of all of that at Dana Farber that same day. My lung function is great, so yay! Still waiting on the infection results. 

But there are two things I couldn’t do on this trip, and will have to come back for. My doctor wants me to have a PET-CT scan. This will illuminate my boney lesion metabolic activity. So those spots that are just lighting up on the CT will actually have some movement to them and we will get to see an enhanced view — are they healing or growing? And the other scan I need to do is a liver MRI to look at that tiny spot. Is it a lesion or just a freckle? 

So sometime in the next few days I will be playing travel agent, arranging appointments, booking flights to Boston, and figuring out where to stay and for how long. 

But I’ll also keep living. Because as much as my shadow reminds me I haven’t unwritten my cancer story, it also reminds me I don’t have all the time in the world. Be intentional. 

My oncologist left me with some good news though. If this mystery turns out to be progression and is cancer related, she said there are many drugs still in my tool box for holding this disease at bay. That’s hope. I definitely like to carry hope along on my adventure. 

Something she cannot give me though is this time back. I am ready to jump in to my life in Denmark. I want to walk the kids to school, make some bread, start Danish lessons, and really embrace the change. I am less overwhelmed by all of this than I was a few days ago, and more frustrated that I am being taken away again from my kids and husband and our Danish adventure.

Thank you to everyone that has reached out to me to check in, offer me love and light, rides, and places to stay. Ya’ll are the best community I could ask for. I am thankful for your support every day.

Yesterday I came together with 10 other friends living with MBC to honor our friend Katie. It was a hot day, just like Katie would have loved.

Katie was a runner, PTO mom, and advocate. She was kind, funny, and tenacious. Her daughter’s school PTO put together this 5k in her honor; Her husband, Mike, designed the shirts; Her youngest daughter (that Katie was pregnant with when she was diagnosed with MBC) announced the “GO!” for the participants; And about 400 folks walked/ran/skipped/rolled across the finish line in honor of Katie.

It’s been two years of seeing most of our Young MBC group on little zoom boxes and it was LOVELY to see and hug these beautiful women in person. This community is something special and we wouldn’t be who we are today without Katie or her legacy.

Thank you Glover PTO, Mike, and all who showed up to honor Katie!

(📸 from: Christina and Anne)

Sometimes we hear or say things about cancer that makes the experience feel like we are battling some evil being inside our bodies. Someone might say “I beat cancer” or “she lost her battle with cancer.” And for many that fight paradigm works for them, but for a lot of us, including me, it just doesn’t.

Cancer isn’t some jabberwocky that I can fight and eliminate. It wasn’t a jabberwocky before I had MBC and it most definitely isn’t now. And maybe for a reason you haven’t considered.

Cancer is rogue cells, growing in the wrong place, at the wrong time, and at the wrong speed. It’s all wrong. I’m not wrong. My body isn’t wrong. It’s these unruly, sneaky, and intelligent cells that are wrong. So when someone dies from cancer they haven’t a lost battle — it’s a treatment that has failed the body and the person. Cancer has failed to respond appropriately to the medication.

In the past I have referred to my cancer’s behavior as that of an unwelcome guest in my body. I didn’t welcome it with open arms and I sure as hell am not making it cozy and well taken care of. In fact I am inviting many malicious and inhospitable pharmaceuticals into my body in hopes that cancer will behave and make itself small for as long as possible.

The medication I’m on is continuing to work and do it’s job. My most recent scans showed stable disease. Best news I could hope for on the cancer front!

So yay! It’s been 3.5 years of abemaciclib, anastrozole, and all of the other drugs that keep the side effects of abema and anastrozole tolerable. It’s like I drank from the right vile from the talking table. The research said “Drink me” and I did. How much longer I have before the potion wears off is still unknown.

My blood work has been okay for the most part. I am dealing with “watch and wait” on a few items, but because the scans looked stable we just continue forward, watching and waiting until the next scan. As my NP said, we cannot do something about something that we cannot see [on the scans].

While we watch and wait life goes on. We have had some awesome news come our way on non-cancer stuff, the kids have been busy with school and sports, and I completed the BU genealogy certificate program. All things to be grateful and happy about.

In just a couple of short months our family will be flying off to Europe to try our hand at being Danish residents for six months. Yes, you read that correctly! Andrew will be on sabbatical and he was granted a Fulbright Fellowship to do some research while we are there. The kids will be in school and I’ll be taking Danish classes. I’ll fly back when I need to for things like Runway4Recovery and scans at Dana Farber.

Some folks that have heard this news have asked “why Denmark?” To which I reply, “why not?” As you know, we are doing as much as we can to make big wonderful memories as a family. Andrew and I have always dreamed about living abroad and Denmark presented itself as an opportunity to do that. It’s a big huge deal that we are excited and nervous about. Ultimately though, it aligns with our mission to say YES to adventures for as long as we are able. Because someday I won’t be able to say yes to it all.

And that’s my personal jabberwocky: the instinct to play it safe and to find easy ways to say no. Cancer reminds me that I am “sick,” covid slowed everyone’s world down, and society tells me to not take risks. I am a risk adverse person in general so that is a comfy place for me to be. But I also think cancer reminds me that there is so much life to live and memories to make. I want to be like Alice and defeat the jabberwocky. I want to keep saying yes to these adventures and to more memory making. As my friend Moni says “LFG!”

What’s your personal jabberwocky?