Hannah’s journey on earth ended peacefully, and surrounded by love, on the evening of October 21st. She is now somewhere beyond this world and will be cancer free forever.

We will make sure her blog remains accessible as a record of her travels through Cancerland, a memorial to her courage, and a beacon of hope for others facing the most difficult of circumstances. 

Thank you to everyone for all of the love and support over the years.

~ Andrew, Clara, and Matthias 

For additional information on Hannah’s life and passing, please visit these sites:  

Public Announcement (https://www.facebook.com/share/p/L2fUy2Qqr11gUgbG/)

Runway for Recovery Documentary (https://youtu.be/rSTqgzJpQMQ)

Obituary (https://www.kentandpelczarfh.com/obituary/hannah-earle)

Hi all! The last two weeks have been a bit of a whole thing. Let me take you on a little adventure: 

On Friday the 13th I went for a lovely walk with a friend in the morning. I was feeling pretty great but a little hungry for lunch when I got back. I heated up some left over spaghetti but as I was bringing my pasta into our kitchen I couldn’t create a mental map of how to get to the dining room table. If you don’t know, I have lived in our house for 11 years and every way you walk in the main part of the house leads you back to the dining room. It’s not complicated. 

I was holding my warmed up pasta but was really confused on where I should go to eat. I found my way to the bottom of the stairs and Andrew heard me crying. He asked me if I was okay and I said “no, I can’t create a mental map of our house and I can’t find our dining room table. My field of vision is impacted and I am very confused.”

He took me to the dining room table and then put me to sleep after I ate. He told me that I was having a hard time making words, got lost a second time in our house, my body got rigid and I couldn’t move at all. Andrew called the paramedics, I got sick to my stomach, and the EMTs had to use a special chair to get me out of my house and into the ambulance because I wasn’t able to move normally.

I remember almost nothing about that afternoon. I don’t remember getting sick, being transported out of the house or in an ambulance to the ER. I remember having a hard time forming words after a while. I “woke up” coming out of either an MRI or CT machine (I had both scans done but have no recall of them). My team at WDH was in communication with my team at BWH. The plan was to get me transported down to Boston to be at BWH but we had to wait until there was a room available. Andrew stayed with me in Dover until about 12:30/1 am. 

On Saturday the 14th I was transported later in the day to Boston where I stayed for two nights before being discharged. The doctors looked at my bloodwork and my scans and determined that I most likely went through a seizure. Before I was discharged, I spoke to doctors in neurology, radiation, neurosurgery, and oncology. The team all agreed that although a stroke was considered, the scans really didn’t support a stroke. I def had some amnesia and memory issues on Friday the 13th. I had been struggling with memory for a few weeks (more than my usual) and then this episode happened. I was having trouble speaking, expressing myself, and remembering even familiar people. Failure of brain functionality is not something that brings me great vibes. I like it when my brain functions normally 😉 

I am now on an anti-seizure medication, steroids, and I cannot drive for about 5 to 6 months at a minimum as my brain slowly heals. This has all been very tricky for our family as we didn’t know how I would recover,  and whether or not I would feel different in a few days or a few weeks. At this point, I have more energy today than I did yesterday and more than I did the day before that, so things feel like they are heading in the right direction. — slowly. The medication I am on makes me fairly sleepy and I have been continuing on my chemotherapy, carboplatin. 

Tomorrow morning, I will be having another set of scans to check my brain activity and my body as it recovers from this seizure episode. I should be getting a third round of carboplatin in about 10 days unless the scans show a major explosion of LMD or cancer growth somewhere else in my body.

So far during the last six years, this experience has been one of the most scary episodes that I’ve ever experienced. Andrew said it was a terrifying experience to witness. I am so glad he was home at the time when I had this experience so that he was able to call emergency services. The kids came to visit me at the hospital as did Andrew. My sisters came to visit as well and it was so nice to have them here to be of comfort to me and to be of comfort to my kids.

I had some other visitors too, lots of calls, and texts. Thank you to everyone for checking on me but also for checking in with my family. Everyone appreciated the love and connection. 

I turn 40 next month, in just a few days actually, and I really hope I am cleared for travel because I have epic plans for my 40th birthday! 

I’ll let you know the results of the scans when I get those answers. Keep saying prayers, smiling, enjoying the changing of seasons, and hugging your loved ones! 

Love you!! 

Hello All! I am going to make this a farily short post as the news I have to share has me sad and disappointed and I am ready to take a break from thinking about it 24/7.

In June I had progression of the LMD in the base of my brain stem. Just a little, but enough to call it progression. The silver lining in that bit of progression is that my liver was looking really good and the improved liver and small amount of LMD progression was just what I needed to end Eribulin and qualify for that clinical trial I wanted to get on (Dato-base trial). I was SO hopeful that I would get many months on the Dato-DXd drug.

I had been feeling pretty well in many ways on the Dato-DXd drug and didn’t go into my scans last week with much worry. Unfortunately, the scans showed a different story. Damn. There has been significant progression of the LMD and now covers much of my frontal lobe area as well as the brain stem. I am not symptomatic in any new ways, I have quite a bit of energy, my GI issues have largely been under control, the neuropathy is much improved, and I’d even say my balance has improved. And if you look at my blood work I am also trending in the right direction.

So it’s with a heavy heart that I have to say I am no longer on the clinical trial. Only two doses in and things got much worse in my brain. I will start a new-to-me drug called Carboplatin (carbo) next week. Carbo is a fairly old drug in the chemo world, but it’s likely to have some power to cross the blood brain barrier. Once I get two doses out of the way we will scan again; in six weeks. Until then I’ll be hoping and praying that I remain feeling well and there will be no major side effects from this new medication.

I was on the Dato-DXd drug just long enough to really have a great summer with the family. I am so glad I felt well going out and doing a lot of what I love to do. Change is inevitable when living with this disease, so I’m trying to live it up as much as I can when I feel well.

Take Care my friends! XOXO

Last Tuesday I went in to have blood work and get treatment. Unfortunately, my ANC (white cells) were far too low. I had to get a Neupogen shot in clinic and give myself a couple of Neupogen shots at home after that to boost my immune system. I went back in on Friday and got the all clear to get my second dose of Eribulin. The good news is that those LFTs seem to be trending downward.

Second dose went well, it’s a super quick IV injection, so I was only at DFCI for 3ish hours start to finish. Side effects really hit me on Sunday. I experienced intense fatigue, off and on body aches or headaches, digestive slowness/sluggishness, emotional swings, and some neuropathy.

This week is my week off, and I am feeling a little better today than I was yesterday, and definitely better today than I was on Sunday.

Thank you for the cards, texts, and messages of support! -XO

P.S. I am a published author now 🙂 Check it out…https://www.sciencedirect.com/science/article/pii/S2059702924007579

October is over, and November is here. A lot has happened since I returned from NJ, but the most important things that have happened are that I have spent some quality time with my family and some friends, you all have SHOWED up for us in such significant ways, and I have been slowly recuperating. Thank you a million times over for always being such big supporters of our family. 

Highlights from October:

• #LightUpMBC — On my birthday, my friends planned a special lighting event at the Durham Community Church, lighting of houses around our community, and a giant fundraiser for Metavivor with Tideline, a local food truck venue and brewery and Sweetened Memories, a local bakery. It was a lot of fun and so beautiful to see. So much work went into the event. I am so grateful that it happened, that I witnessed it, and that it was so successful! My eldest sister was alos here visiting, which made the event even more special. Please check out the websites if you don’t know what #LightUpMBC or Metavivor is. 
• We went to Maine for a long weekend with Andrew’s extended family. We did plenty of relaxing in such a beautiful place, and it was just what I needed to recuperate after chemo earlier in the week. 
• We had a weekend where the boys went to Colorado, and the girls stayed home together. That was a fun little weekend for us to spend extra special time solo with one of our children. 
• C had her first school dance. She got dressed up, danced with friends, and had a blast. M hosted his Danish friend for a few days and took him trick or treating in Durham. Trick or treating is a new-ish phenomenon in Denmark, so it was fun to show them the American way. 
• I continued to get chemo all month (saci), and I am tolerating it well. My current schedule is two weeks on and one week off. So I am down in Boston for treatment two times every three weeks, plus when I have scans. 
• I had a couple of trips to the local ER on my off week from chemo in October for a “fever of unknown origin.” My SIL was a trooper and sat with me in the ER for many hours. Ultimately, the fever was mysterious, and I was given some antibiotics to take for a week, and it went away on its own. 

Current Treatment

As I said before, I am still on systemic chemo. I started the Sunday before I left for NJ, and we kept it going once I returned. This chemo is called Trodelvy or sacituzumab (Saci). I have tolerated this chemo pretty well. It’s a cousin to Enhertu, which I was on in the spring. With enhertu, I was rather run down and didn’t feel well on it for the better part of a week. With saci, I am usually down only for a day or two, and then I am back. I have a lot of fatigue still from radiation and saci, too, but fatigue is manageable when I am not feeling sick and foggy. 

My cognition is still not back 100%, but I am doing much better than a month ago. I have been tapering the steroid I was on, and as of yesterday, I am done taking that for the time being. I was on the steroid for so long, and it made me feel so awful (jittery, brain fog, weight gain, etc). I am happy to be getting a break from it. 

I have now had a brain scan, spine scan, and body scans since radiation and starting saci. I am pleased to report that the LMD has responded well to the radiation and that the saci also has had a positive impact on the liver lesions. So that means that as of right now, I have stable disease. This is a HUGE win! The cancer isn’t gone, but it is currently responding to the treatments and not growing. Shrinkage is good, but not growing new lesions is even better. 

We don’t know how long this will last. Sometimes this will be only for a few weeks, and sometimes this can be for months. I’ll get brain, spine, and body scans every six weeks. This is a short time interval between scans, but LMD can move quickly, and we need to closely monitor it. If I am symptomatic before scans, I need to act right away and call my doctor because that usually means progression. 

I learned that there are symptoms to look for that are unique signs of progression to the spine and brain. For the spine, I am supposed to look for new numbness/tingling in extremities, difficulty walking, or incontinence. For progression in the brain, I am looking for vision changes, changes in how my face feels or functions, or seizures. I hope that with a close eye on things, we can catch the progression before I am ever severely symptomatic, but you never know with this disease. 

What’s Next?

I have always appreciated my team for many reasons, but one of them is that there is always a “What’s Next” plan, which gives me a lot of hope. With LMD there is not a clear “What’s Next” plan. It’s sort of a wait and see approach. There are some options, but any changes to treatment have to be carefully weighed with quality of life during the time I have left, overall survival statistics, and if we are treating body or brain metastases. It’s not as cut and dry anymore. There are some chemo agents that I could still consider that cross the blood-brain barrier, but those are more effective on the body than the brain. So if there is progression in the brain, these aren’t the best options. One option that I have in my back pocket is pretty radical, and it would be for primarily treating the LMD. It’s something that Dana Farber has a little experience with, but they are willing to explore it with me if that’s the direction I want to go. If I go that route, I will explain it in detail, but for now, you should know that it’s a bit like the Wild West for my brain. 

For now, I am doing my best to regain some normalcy in my life — packing lunches and cooking dinners, doing laundry, organizing cabinets, carting kids to activities, etc. I don’t like being a full-time cancer patient — it’s an identity that really sucks for me and for my family. It’s hard for it not to take over a large part of my day when I am regularly on the phone with doctors offices, insurance, taking medications, monitoring how I am feeling, or at appointments. I want to take a break from all of this, but that’s impossible. So instead, I celebrate days when I have more energy, when I am able to get a few more things done and still take a nap, when I get extra snuggles from my loved ones, and of course, I will celebrate stability of the disease and tolerance of the current chemo! 

For those following this part of my journey closely, I wanted to offer you an update because things have been RAPIDLY changing, and yet, everything appears to be unfolding just as we thought it would from the get-go. Weirdly, those two things can both be true.

I want to start by saying that I have put a lot of work into getting this particular treatment for myself and this treatment plan into place. Being a self-advocate and expert on my body and my disease takes hours and a lot of focus on details — which is more challenging now that my brain is much more mushy than before. A level of self-assuredness also blossoms from hearing and accepting all the support from my medical team, family, and community. I couldn’t do any of it without all the help I am getting from my community showing up for me and my family. We are turning out to be a really great team. Thank you all for sacrificing with me. Thank you for being tools in my toolbox that I can deploy when we need it most. We feel the love, and I am beyond grateful. I am humbled by your love and generosity many times a day. When you show up for us in the ways you are showing up, it allows me to be a better advocate and a better mom — my two leading roles in this journey. I never want you to think I expect the help or take it for granted. I am honored every time.

Finding the treatment

When Mass General wouldn’t take me on as a patient, I did what Hannah does…I kept pushing. My brain had just been radiated, and I was becoming more symptomatic, not less. I had started to see the information from major research institutions that LMD wasn’t something to wait patiently on. If I was going to seek more treatment beyond chemo and traditional radiation to my spine, I needed to get leg work done, now. My radiation team at Brigham and Women’s could only help so much, so doing the job was on my shoulders.

I have been going around in circles about how to say this, and I am sure I don’t have it perfect yet, but here it goes. Surgeons like to cut; they will inevitably find a surgery they can get behind. Oncologists believe chemotherapy is a tremendous systemic way of treating cancer, and they will find the right cocktail of medications to attack cancer cells. And radiologists like to radiate. But when you have radiologists who aren’t taking you as a patient or say just stay put and don’t seek anything else, it starts to feel like they don’t have hope. They know the dismal statistics, and without saying these words directly, they are saying give in to the reality of this disease and let it run its course. (As an aside, my personal doctors were not hopeless; this was from “outside” the team.) But that’s not what I want to do. I am not ready to give up or sign off. I have two children that need a mom. Other women are dying from this disease, and I don’t want this future for any of them. I want to be part of a revolution that can offer more information about this disease so that someday, there aren’t people losing their moms, sisters, daughters, and friends to this horrible disease. So, with that drive in me, I went searching…

The time that goes into seeking second opinions, new treatments, or clinical trials can be endless. It’s a rabbit hole that I could easily get lost in. My payout is hopefully more time and a good quality of life (QOL) for as long as possible, so it’s pretty hard to stop. However, I set a goal to reach out to five of the top proton centers in the US to start. First, I needed to know if they would even take me on as a patient, then would they expedite my case, and would they work with my insurance? How fast could they upload my files, images, and pathology reports? One door closed with one center that just couldn’t get my images, another door closed when the center said in their history of doing proton therapy, they have never had my insurance approve proton therapy for LMD MBC (say what?!), and the others were slow moving. Procure was the only center that actually panned out, and it was a center that wasn’t on my radar at all but recommended by Memorial Sloan Kettering (MSK) because they could move fast…and they have!

Pew Pew Laser Beams

Last week, I had the simulation and described that experience. The actual radiation differs from the simulation (and traditional radiation) in some ways and is the same in others. The parts that are the same are the basics: I lay on a table half-naked, and these friendly radiation technologists put my face mask on. They take pictures of my body and then adjust whatever part needs alignment based on those images. They leave the room, radiate me, and then I am done.

It sounds simple, but a lot is going on while I am lying on that table. My job is to embrace this mask and lay perfectly still. The mask at Procure doesn’t have any cutouts for my nose, eyes, or mouth, so it’s extra confining. I don’t have claustrophobia, but this is enough to even make me panic. I remind myself multiple times a session, “Don’t fuck this up,” because if I panic, I don’t get treatment, and they cannot give me that dose of radiation again, so I would be S.O.L. As I said, much is riding on getting the treatment and its success. The mental game is a beast.

The room itself where the proton radiation machine is located is HUGE. The device is this giant circular donut space with a table in the middle. Check out this page, which gives you an idea of how this looks for other kinds of proton therapy. My experience is similar but not exact. The video is excellent.

So, while I am lying super still, I can kind of see a black box above me that is taking the images that will help the technicians and doctors direct my body alignment. I am told there is another black box doing that somewhere else near me, but I cannot see it. The doctors are sent the images in another room and direct the technicians on how to adjust my alignment. Once perfect alignment has been achieved, everyone leaves the room, a doorbell chimes, a hydraulic-like noise shoots off, some little doppler-type poppings sounds happen for a while, another hydraulic sound, and then someone comes in to tell me that the first session is complete. That’s the upper spine, done. I can tell they are scanning something because of some beep near me, and then I am told, “Okay, it’s time to do the second dose,” which is my lower spine. Same thing as before on repeat.

From the time I am on the table to when I am hopping off to get back into my clothes, I am probably in there ten to fifteen minutes. It’s not a long time, but also, it feels like FOREVER. That mask man…it’s a weird one.

So no, it’s not a bunch of spacey laser beams shooting around me. But some pretty freaking radical science that I still don’t fully understand, blasting away cancer cells from my spinal cord.

What’s next

I’ll have a blog update for you soon with the post-radiation plan. The long and short of it is that I was starting to feel like proton therapy was my only hope, and I was beginning to doubt whether it was worth all of the effort. But as of today, I have renewed faith and hope that I made the right choice, and there is a plan to treat the LMD and the body metastases separately and simultaneously, and the new additions to my oncology team believe I have a good chance at gaining some QOL back, and I’ll get additional months with you all and most importantly with my kids ❤

As I prepared to go down to NJ for the initial consult with ProCure, I kept thinking about how much is riding on this treatment, this center, my insurance, these doctors, and my unwavering support network. I called my sister-in-law (SIL) and asked if she would accompany me to NJ for a night. She didn’t hesitate in saying YES, and I got to work putting together our itinerary. Flying is not in the cards for me right now, so I figured a sisterly train trip was in order (I love traveling by train, btw). It was easy: bus to Boston, train to NJ, Uber to hotel, etc., etc. I had done more complicated international travel back and forth to Denmark just a year ago. 

Oh but it couldn’t be that simple, right?

I dropped my son off with Grandma on Tuesday afternoon, and my father-in-law (FIL)/Grandpa took my SIL and me to the bus. Tuesday was hot and humid, so the AC on the bus was lovely. 

We were all set once we navigated from the south station bus terminal to the train station, or so we thought. We headed to the train board to see what track we would be leaving from, and we were notified the train was delayed but didn’t give us a time/location for going. Alright, so we decided to wait a bit, grab some lunch, bathroom, you know, practice being patient. A hard-to-hear announcement came on at one point, saying something along the lines that there was a delay for all south bound trains and to check in with the station. 

At the ticket counter, we were told that powerlines had fallen on the track in RI and that the earliest the train was expected to leave was 8 p.m. That would put us getting into NJ around 2/3 a.m. Not ideal. So my SIL thought fast…borrow a car (thank you to the couple of people we reached out to who offered a ride/car) or rent a car? We went with the rental. Ultimately, we only needed a one-way ride because a return trip was already booked the next day. 

We called my FIL and asked him to figure out the logistics of getting a car from Boston Logan Airport and where the closest drop-off to ProCure would be. Then, my SIL and I hopped on a bus to the airport; halfway there, the bus stopped and told us to get off and transfer to another bus to continue our journey. 

Once we arrived at Logan, we waited for ANOTHER bus to the rental car transit area. At the rental car transit area, we made our way to the Budget counter. We were greeted sweetly by a woman who asked if we were in their “Fastbreak” club…” No “… “Oh, this counter is only for Fastbreak customers.” I think she immediately saw the disappointment in my eyes, but in case she didn’t I quickly and kindly said “oh, we didn’t know. Well, let me tell you, we have had a day, and I need to get to NJ as soon as possible because I am going to start a special cancer treatment there. Can you just please help us?” And before I could finish my plead, she was already nodding her head and saying she would help us. 

We scored a Nissan Rouge and set off on a bus/train trip gone road trip. 

My SIL owned the NJ turnpike, and we arrived in Somerset, NJ, at the stroke of midnight. It was a lot, but we made the best of it and got the job done! She’s the best!

The appointment

We arrived at ProCure early and sat patiently in the large and open waiting area, where there were many healthy-looking fiddle-leaf fig trees. If you know me, I love a good indoor plant. There were a few other patients and staff, too, but we were so spread out that no one was close to one another. That didn’t stop one previous patient turned “educator” from sharing his stories with whom he was talking directly, but also with the ENTIRE center. I learned about prostate and anal cancer radiation treatments that day. HAHA! 

My SIL joined me back in the appointment when it was my time. First, we met with a person from financials. She reviewed their billing policy and how it will all work with insurance. Then, it was time for my SIL to return the rental car, so I remained at the appointment while she departed. I met next with the radiologist, Dr. Chon, and a nurse. 

We reviewed my medical history and discussed my current side effects/symptoms, what to expect on treatment days, post-treatment side effects, and how he was eager to get this started ASAP. Dr. Chon is one of the kindest humans I have ever had the pleasure of meeting. I hope that genuine heart of gold translates to really great radiation work! 

Next up, we did the “simulation.” This entailed getting into a robe, socks, and a gown, and then I headed to a room with a CT machine. I had two radiation technologists working with me, and they really liked my choice of Elton John Radio to listen to while we simulated. 🙂 They first had me lay down in the same position I would be in for radiation and then customized a headrest and a full face mask (just like whole brain radiation). Once that was curing on my head, they set up my body for alignment. Nearly naked from the waist up, they adjusted my body based on where the overhead lasers were on my body. When I was where I needed to be, they did a couple of CT pictures to ensure the outside body matched up with the inside body in terms of alignment. Once that all looked good, they gave me three new radiation tattoos — one on each hip and one right below my belly button. 

Then that was it! I changed my clothes, headed to the lobby, and joined my SIL for the journey home. We Ubered to the train station (which I am REALLY grateful we didn’t end up there at 2/3 AM the night before, eek!) and smoothly sailed all the way home.