Quick blood work update!

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…

Out of the fog

My first infusion of Enhertu was last Thursday. That day was overwhelming to say the least, but I had some great companions to help me remember everything that was said. I was educated on what possible side effects might occur, but you never know how it’s going to hit until you go through it. I am expecting each cycle of medication to have a similar pattern of side effects, and hopefully with time (please more time!) the side effects will be better managed because I will know what to expect. Since Andrew and the kids are still in Denmark, my mother-in-law arranged for me to have someone with me each night, so I wasn’t alone navigating side effects. So thankful for my night nurses ❤

The first three days are fuzzy for me. My brain was in a chemo fog for a better part of a week but the first few days were definitely the worst. Extreme exhaustion/fatigue would take me down at any given moment. I could be in the middle of a conversation and all of the sudden I just wanted to sleep. By day five I was only taking one nap a day. Thankfully, I had very mild nausea. I hope this trend continues. Nausea/vomiting can be something that can pop up anytime during the three week cycle, but is most likely to occur in the first ten days. I didn’t expect to experience major bone pain like I had never felt before, but it hit me like a ton of bricks on Sunday night. I had to call my oncologist to get pain management advice because I was not handling the combo of pain and brain fog well. If you ever experienced back labor pains, it was worse than that and no hope of a sweet baby at the end.

Now I am on day eight and I am feeling so much more normal. Energy levels are still not at 100% but I think that’s pretty normal for all IV chemos. I had a blood draw yesterday and my liver function numbers are holding steady at an elevated state, but not emergency bad. I hope that there will be some decreases in these numbers after my next infusion. If I had control over cancer things my liver enzyme numbers would go down, my hemoglobin numbers would go up (without another transfusion), and my pain would subside because the Enhertu is working at shrinking liver and bone lesions.

Now that I have this first infusion out of the way, I am feeling a little less scared and more hopeful. I have been reading many accounts of Enhertu working for people, not just months, but a year or more. I really hope and pray I am one of those exceptional responders again. My next set of scans will be mid-February. This is when we will see if Enhertu is having any impact on the cancer at all.

In the meantime, I will be well distracted by wrapping up our Danish experience. We have a couple of final excursions planned and a whole apartment we need to pack up. I am so grateful for this experience and grateful we were able to stay the whole six months. This will be an experience that will live in my kids for their whole lives and that makes my heart swell with gladness. Even though my experience was dappled with these return trips, Andrew did his best to keep the kids routine here pretty standard while I was gone. This means that their memories of this sabbatical will be mostly of Danish school, new friends, bakeries, playing tour guide when we had visitors, after school club activities, museums, and all of the travel we did as a family when I was present. It’s bittersweet to close this chapter, but we are excited to come back to a community that we love and appreciate so dearly. See you soon Oyster River!

New year, new plans

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.

Lofty dreams do come true

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!