What a strange world we are living in. At least I hope it’s strange for you and it’s different for you, if it’s not, you probably aren’t doing your part to keep people like me safe. Does that sound judgey? I’ll explain:

With Covid-19 on the rise each day in the US, and a Pandemic being declared we are no longer watching this happen to a country far away. It is happening here. This means we’re all in it and our own individual decisions determine how many lives will be lost. I honestly don’t care if you think this is hysteria or “just the flu” or you deem yourself, your family or your friends “healthy”. That is not the point and is irrelevant.

Simply put, while you may be healthy, if you do get covid-19 and get just mildly ill, or have no symptoms at all, the person you pass it on may not be so lucky. There are so many people who are immunocompromised. People like me who get chemo, have an autoimmune disease, people with diabetes or lung disease. People that are on medications that lower their immune system. Not all health issues are obvious. People that are older like many of my peer’s parents. They may be healthy but their immune systems just by virtue of their age puts them at significant risk. Risk of death.

I have done all I can do which is put myself in quarantine away from my family until they have all been quarantined long enough that we are sure none of them are sick. I have moved out luckily to just across the street where my very sweet neighbors are letting me stay above their garage. I am grateful I have this option, many others do not.

Listen people, this is hard. My own husband who is one of the most level headed and do the right thing guys I know hadn’t even understood the measures needed to protect the vulnerable until last night.

Parents, what if your child just came home from college and then you took them to see your parents who are in their 70s or 80s. How can you be sure you or your kid doesn’t have a mild form of the virus and now you’ve infected your older parent who may get gravely ill? You can’t be sure.

College kids and kids that are in high school with a driver’s license. I get it, you’ve been sent home from school, away from your friends. For some of you it’s spring break time so why not hang with your friends? Who cares about covid-19, it’s not going to kill you. It’s actually not about you, it’s about the other people you come into contact with that may be severely impacted. Go home. Be with your family. Take a hiatus from your social network and trust it will be there when it’s safe to go back to life as we know it. If you are climbing the walls, have a friend over and hang in the back yard 10 feet apart. Go for a bike ride with a friend and don’t get too close to each other or touch one another. You have lots of ways to stay in touch. Dig into a different way of life for a while and see what comes out of it. It may surprise you. Read a book for pleasure, learn how to bake bread, shoot some hoops in the driveway, go for a run, sleep in! Even if you’re bored off your ass, you hate every second of it and you don’t want to do it, do it anyway. It’s the right thing to do.

Adults – You deserve a trip, you deserve a spring break so you’ll drive to where people are still gathering so you can have the vacation you deserve. Or you fly. How does that help us all? Why are you more deserving of a break than the people that are already at home having less interaction? What if a few people in your group get sick with the virus? What if a hospital stay is required? If enough people think this way, there will be overcrowding in the hospitals in no time. Now I’ll loop this into how this is selfish.

I rely on being able to get drugs to keep me alive. Without them, I can’t survive. Right now, in this moment I have a decision to make. Stay on chemo which hammers my immune system and makes me even more susceptible to this virus (and anything else for that matter) or change my treatment and do a targeted ablation called RFR. This requires me to schedule an outpatient procedure in a hospital setting. It also requires me to allow enough time to get this set up. While people are hooping it up on spring break or getting together in groups at bars, restaurants etc, germs are being shared and a few weeks from now, when I’m ready to do this outpatient procedure, the hospitals are maxed out with sick covid-19 people and my procedure gets harder to schedule and a lot risker. All because you, you lucky non-compromised person needed to see your friends, needed a vacation, needed to entertain your kids, needed to think about yourself.

A quote I saw yesterday summed it up well for me.

Your grandparents were asked to go to war
You are being asked to sit on the couch

Let’s protect the vulnerable, let’s protect our friends and family who are healthcare providers. Remember, our healthcare workers are on the front lines. If we reduce the amount of cases we help minimize the exposure these men and woman have. They are already short on masks, gloves and hand sanitizers. Theft has been rampant of this items in all medical settings. My oncology PA and dear friend has ONE mask and was told not to lose it. They have families and friends that love them a lot and they don’t get to stay home from work because they are trained to do a job the rest of us can’t.

I know businesses and personal income are at stake but it will be an even bigger issue if we are out and about giving more chances for spread. This will all last longer.

Take walks, garden, cook, write letters, do a Tik Tok with your kids, tackle a project you’ve put off, play board games or poker with your family, do a puzzle, get fit in your living room, call an older friend or relative and catch up, take up meditation, noodle on an instrument, visit at a safe distance with neighbors, settle into slow, if you’re an extrovert, tap into how introverts like things and have grace for its merits. If you feel the slightest bit off stay away from others and monitor your symptoms. Kids are going to be bored and annoying. Those who live alone will feel isolated. This isn’t fun. Nobody WANTS to do this but most of us are in a position where we have the choice. Many people have greater sacrifices to make because not working means not having enough money to live.

If you do have to go out:

Wash your hands like crazy whenever you can for 20 seconds. Sing Happy Birthday twice.

Keep 10 feet away from others

Don’t hug people or shake hands

Do what you need to do with minimal contact and then go back home

Please do the right thing. I think we would all feel best if we were more careful than we needed to be instead of wishing we had been more careful.

This is from the doctor in Austin, TX  my mother, husband and PA go to:

Stay safe everyone. There’s plenty of fun to be had!

xoxo Hilary

Here’s my health update:

This past year I went off Gemzar/Cisplatin, the chemo combination I have done each time I have been on chemo since diagnosis, to try a targeted drug for the IDH1 mutation I have. The drug, Tibsovo, is an oral drug that I got free from the drug manufacturer, Aigos. I was excited to try this drug because while it had no curative potential, it did have the potential to keep me stable, like chemo but with no side effects for maybe as long as two years. Unfortunately, it didn’t work. I felt great on the drug with zero side effects but within a couple of weeks on the drug, my cancer grew. This was a big disappointment as I had really hoped to get a good long break from chemo and live normally for a while. I did get a chemo break for a little more than 2 months.

I went back on chemo in early December and now as I’ve shared above, I have a decision to make about what I do next for treatment. I’ll keep you posted.

With the Holidays this month we are all giving and receiving in some way. This year I’m hoping your giving extends to those that are less fortunate. We as a family have been the grateful recipients of generosity well beyond our wildest hopes since I was diagnosed with cancer 5 years ago. All this help has flowed to us in many forms and behind it we have felt extraordinary love. We are fortunate because we have a steady income AND we have friends and family that have helped us while our financial burden has been stretched with cancer treatment costs.

There are so many families struggling with circumstances that were unforeseen and the fallout has been financial hardship. Not everyone is blessed with a network that can step in and help financially. Children of incarcerated parents fall into this category. When one or even two parents are incarcerated there can be little to no income. Other family members or friends must step in to take care of children and in this time of giving, there often isn’t money to be spent on gifts.

Hope Beneath the Tree is a gift-giving program for children of incarcerated parents. Last year this program was able to deliver over 300 Christmas gifts to children of incarcerated parents. This year they hope to beat that number. When Hope Beneath the Tree was able to speak with some of the recipient families from last year several people explained that the gifts from Hope Beneath the Tree were the only gifts the child received, and several sent photos of the happy kids opening their presents.They expressed their true appreciation of these gifts.

If you would like to contribute to this organization and help a child this year, it’s easy! Fill out the form in the link below:

donor sign-up form

After you submit the form you will receive an email with the child’s name, age and wish for a gift. There are no limits to what you spend but the organization asks that you spend a minimum of $25.00. Gifts need to be mailed out no later then December 17th to ensure on time delivery.

Get your street to go in on it together, have your children do a fundraiser with a few friends and sponsor a child, make it a family effort or do this in someone’s honor as a gift. I heard about this through my friend Dana, last year and this year my Godson Leo and his sister Phoebe have joined Dana by lending their energy to the cause. Below is the website and email for Hope Beneath the Tree. Please direct any questions to that email address and thank you!

xoxo Hilary

Website: hopebeneaththetree.weebly.com

Email: hopebeneaththetree@gmail.com

https://docs.google.com/forms/d/e/1FAIpQLSfv7E8pGnsTfvslW3LpXExYDABGBcYk7Bpywn6Ig42XSi0fNw/viewform

Many of you know my friends Molly Carroll and Charlotte Hardwick, have heard me talk about them or heard about their retreat I have attended twice in Costa Rica.

They will be HERE in AUSTIN this Friday, November 2 (my birthday by the way…) doing what they do best, offering yoga, deep breathing, calm, laughter and connection. There are a few spots left for their Nourish Yoga Workshop. I hope you can join me for a really lovely day away from it all in Westlake.

Information on the workshop:

“Your problem is how are you going to spend this one and precious life you have been issued. Whether you’re going to spend it trying to look good and creating the illusion that you have power over circumstances, or whether you are going to taste it, enjoy it and find out the truth about who you are.” Anne Lamott

Join Charlotte Hardwick, yoga and nutrition teacher, and Molly Carroll, licensed therapist and published author, for a day away. This retreat will be for YOU to connect with other women, move and stretch your body, write, laugh and rest. You will walk away refreshed, restored with more energy and vitality.

DETAILS:

TIME: 9 AM-5 PM DATE: Friday, November 2nd 2018

LOCATION: Wild Heart Yoga Studio http://www.wildheartyogaaustin.com in Westlake

PRICE: $200 this included yoga, journals, meditation, oils, snacks, drinks, & lunch.

SCHEDULE: 9 am Meet at the studio 9:30-11:30: Slow flow an all levels yoga class with Charlotte Hardwick 11:30-1 pm: Lunch 1-4 pm: Writing and connecting to your intuition with Molly Carroll 4-5 pm: Restorative Yoga with essential oils.

SIGN UP: email Charlotte: charlotte.hardwick@gmail.com to make sure there is space, if she says yes, then venmo payment to her.
PAYMENT: VENMO @ charlotte-hardwick QUESTIONS OR CONCERNS: charlotte.hardwick@gmail.com

For more information on Molly and Charlotte check out their websites:
Molly Carroll
Charlotte Hardwick

Don’t miss out on this amazing day! Feel free to contact me with any questions as well.

xoxo, Hilary

I went back to chemo on Tuesday. Same drugs, same place, same cancer. My mom came to sit with me and it went by uneventfully. The smells of the infusion room, all of them make me want to hurl but happily I kept my cookies in. I walked to chemo with friend Kate Romm and her dog Gracie and my dog Mikey. We walked and talked and pretended that I wasn’t walking to chemo and it was an excellent way to distract me. Kate ambitiously walked both dogs back to my house (Mikey isn’t dreamy on the leash) so this was truly a labor of love, thank you Kate!

The rest of Tuesday was icky as in I felt icky. Charles spent all day Tuesday in the Austin airport trying to get to Raleigh, NC which he finally did in the evening and he was out of town until late last night. The timing wasn’t optimal but certainly doable. Wednesday was another ick day, tired, slightly queasy and full of turtle type movements complete with snappy behavior on my part. Phin and Charlotte definitely felt the weight of chemo mom. I can’t imagine the weight they carry with all this. They function incredibly well but I know when they see me feeling unwell it’s a steep drop into a familiar and unwanted reality. Charles and I hate this but there isn’t any way for us to do it other than to walk through it and watch them walk through it too. It sure prickles sometimes though.

Thursday, day 3 can be my worst day but after a morning of feeling not so great, the rest of the day was pretty darn good. Today, Friday I feel really good (minus the constipation if you must know) and I feel ready to tackle some other treatment plans.

I wanted to take a few lines here to share with you a little something my friend Miles Smith is up to tomorrow. I’ve known Miles since I was little. As the older brother of my childhood friend, Dana (Smith) Valentine, he’s seen me through all my phases. I spent a ridiculous amount of time in the Smith/Valentine homes and for better or for worse, Miles got a lot of face time with me. Dana and I lurked around his parties when we were way too little to partake, and lingered more when we were a little older, he took us to a George Thorogood Concert with his best friend Charlie when we were about 12 or 13 and they didn’t pay any attention to us. We remained unscathed but seriously, that is not the crowd you want your little sister and her dumb ass friend in. Miles and I had fights like siblings and we also became friends as we aged up. We both lived in the Bay Area at the same time and Miles brought us the amazing Frannie who did our pre-marital counseling, helped up plan our wedding ceremony and baptized Phin. We have roots.

Dana’s family has always been my family for as long as I can remember. When Phoebe, Dana, Miles, Tyson and Shelley’s mother got cancer for the second time in her early 50’s, we all thought she’d conquer it like she did 10 years before. Except she didn’t. It was a profound loss. Dana and I were in our mid 20’s and it shaped them all having that early loss. Phoebe was a force, she was complex and devoted, outspoken and fervent. She was also the mom of one of my best friends and her death was shocking. I’d never been witness nor bystander to such grief. I was in it, around it and tried to dodge it for I didn’t know what to do with it. She was 52, it was unfair.

Looking back now, I can tell you the reason Dana’s family is my family is because they let me in. I was part of family discussions, kitchen dance parties, horrible disappointments, firsts, lasts and lots of messy life. Miles, to his credit, could have spent an eternity finding me the annoying friend of his youngest sister, I was privy to a lot of family stuff and he could have forever resented me for that. I’m grateful we went a different path.

Tomorrow Miles is doing something really pretty awesome. He’s doing the
Swim Across America Open Water Bay Area swim to raise money for cancer.

Swimming Choppy, cold SF Bay swim takes BALLS!

Miles is swimming in honor of 3 people:

His mother Phoebe
His family friend Harry of Boston
and me

I am very honored by this because I know there’s big love behind it. I wish Phoebe was here to see what kick ass kids she raised but I know she already knew that. Thank you Miles for including me in this special group, I am truly touched and will be with you tomorrow.

If you would care to donate to Miles’s cause, here is the link, it’s super easy.
http://www.swimacrossamerica.org/site/TR/OpenWater/SanFrancisco?px=1597514&pg=personal&fr_id=4764

Here is Miles with some of the swimmers that will be in his pod tomorrow. (Miles is on the far left)

Have a great weekend and GO MILES!
xoxo,
Hilary

Hi Everyone,
A health update for you.

I was really nervous for this scan because there were certain feelings and signs in my body that hard as I tried to cast off as other things, felt a lot to me like cancer on the move. I had a mini panic attack in the elevator up to my doctor’s office and as usual peed my maxi-pad filled underwear. (I know, I know – TMI)

Just to review, at recurrence in March of 2017 I had 5 tumors. Chemo shrunk them all and recently we could only see 2 of them. I went off chemo in mid May to do some targeted radiation called SBRT on those 2 visible tumors. I completed that in early July.

Monday’s radiologist read noted 4 new tumors and one existing one that got ever so slightly bigger. Hmmm. Not what I expected and doesn’t entirely add up to me. I’m not happy with the read because it’s not clear if these new tumors are brand new or at least some of them are the ones we saw back in March of 2017. To me that’s important to figure out. In addition, what’s the status of the 2 tumors that got radiated? One disappeared and one grew slightly? Again, more eyes are needed on this to get a clearer picture.

My doctor’s first words to me were I was not to worry and we’ve got options. Ok, blood pressure went down some. He continues to maintain that my cancer is not aggressive and my case is interesting. Regardless of the details it’s clear I need to be back on systemic therapy. I will head back to chemo next week, it’s looking like Tuesday is my start day.

I have two mutations that are targetable in my cancer meaning there are drugs on the market now that target those mutations. None of them so far are anything close to a magic bullet. My two mutations are IDH1 and ARID1A in case that means anything to you. There is a parb inhibitor trial at MD Anderson that targets the ARID1A mutation and that may be something I try but it doesn’t seem to keep cancer at bay for very long (3 months) so that’s a lot of back and forth to Houston and hassle for that kind of gain. Looking down the pipeline is using a parp inhibitor with an immunotherapy drug. There are already trials for this with good results for ovarian cancer, as in full remission. Many people with ovarian also have the ARID1A mutation if I am to understand correctly. (I am not a doctor, I just play one on TV).

Anyway, all this is to say, it was a blow for sure. Not what I had hoped. Now I have a lot of homework to do as far as what to do aside from chemo which has been an amazing place holder for my cancer but isn’t curative.

I am in good spirits today. I am coping. I am going to go back to some of my early cancer disciplines and try to support my body’s immune system any way I know how.

You have given me such love and support with prayers and good wishes. Thank you. All the texts and emails were so appreciated.

This morning after I dropped the kids off at school I stopped by a coffee spot (that I never go to) to get a little coffee treat before taking Mikey to the dog park. To my total surprise and delight in walked my good friend Greg Grant (husband of Carolyn) and he was meeting my fellow cancer king and 6 year pancreatic cancer all star Martin. I Love these expats (Greg is South African and Martin is British) because these guys have the biggest, boldest hearts. Martin and Greg worked together long ago and Greg introduced me to Martin when I was very first diagnosed. Angel moment for me.

Onward and upward,

xoxo Hills

(written August 18, 2018)

Summer is all but over, school for my kids starts in a few days and with that comes schedules, early rising and hot days in Austin.

I am heading home to Austin as I type from 5 glorious weeks on the east coast. I started in Vermont with the kids, then to Maine, a short trip to pick Charles up in Massachusetts followed by more Maine, a quick trip to Nantucket and our last stop, The Farm in Pennsylvania. This morning as I woke early at The Farm I was anxious to get my walk in before leaving for the airport. We have a loop from my in-law’s property that is familiar and imperfect; part of the way you must walk on a road that is home to many trucks and doesn’t have a wide shoulder. The rest of the route is scenic with corn fields and hills in the distance. As I walked this morning everything was damp, water dripping off blooms and blades of grass wet from recent rain. I ran a lot of today’s walk and brought my phone along so I could also listen to music. I started off my run with “closer to Fine” by the Indigo Girls. I was in college when it was a popular radio song and I flashed back to my suite mate Molly who could really belt this song out with a voice strong and perfectly pitched which I envied. I noted that I was actually running and feeling down right perky despite sciatica, a pinched nerve in my neck, knee joint pain and neuropothy from chemo. I silently felt a deep appreciation for this small victory and settled into the music, scenery and rhythm of my run.

Once I hit the busy flat road I walked a bit. I resumed my run with some intermittent stops to take a few photos. Soon enough I’d be at the part of the route that slowly leads to the large uphill we lovingly refer to as Joes’s Hill named for the brother of Farmer Bob. Bob leases land from my in-laws and has known my husband’s family most of his life. I thought about the countless times I’ve walked and run this loop at The Farm over the past 14 years. These paved roads have held my most precious people. Deep discussions of our futures and our past, laughter at phrases that tie our family together “Meatloaf!” “Secuurity” and tears over challenges. I’ve solved a million problems on these roads and my heart has swelled with love so big I can hardly hold it. This little loop roughly 3 miles long has seen me strong and seen me weak. I’ve conquered Joes’s hill with a body that never knew cancer and walked backwards up it in the middle of treatment. It has known me as the mother of one then two, as an aunt of 3 then 4 then 5. It’s known me early in the morning and deep at dusk, gnats swirling around my head. It’s held my small children, victorious in the long walk and my niece through the start of her eating disorder. It’s held my husband and I as we broke away from family to discuss pressing real life things. It’s held my sister-in-law and me through the valleys and peaks of our lives as we ground ourselves in the haven of family.

Today I was like a sponge absorbing all the colors around me with my head whirring at the depth and breadth of my summer weeks. There is a shift happening around me and I don’t know yet how it will play out. My sister and brother-in-law come each year to the Farm to meet us and this year only 2 of the 5 members of their family could make it. Clia, Charles’s sister and Cole their middle child joined us this year. Scott, Zoe and Gigi were missed immensely but other commitments kept them from being able to be there. This isn’t surprising, Zoe is 21 and entering her senior year of college, Gigi is entering her senior year of high school and Scott has recently left his job to start a new venture. The fact that we have been able to sync up our schedules all these years as the older cousins have moved towards adult-hood is actually sort of miraculous. Clia and Scott are also perusing a project in Maine which will mean summers for them will be spent there as they become empty nesters next year and the business component of this new project demands more of their time. As I ran today I kept feeling a sense of loss, it was vague but strong. So much so that I noticed things along my run that spoke to me of love, loss and rebirth. Of course for us summer is winding down and this means a loss of a particular sort of freedom. Being in places these last 5 weeks with friends and family I love so deeply is by far the greatest perk of summer freedom. No job, a break from cancer treatment and the chance to be both idle and busy, with my kids, my husband, my mom, sister and family, my in-laws and godchildren, and childhood friends is by far the highlight of my year. Having our children weave their time in camp with new people, houses with family and community of old friends is rich beyond belief. Doing it with the back drop of New England and PA makes this east coast girl smile because that was my summer playground and I love that my San Francisco born, Texas reared children get to experience these beautiful places not as visitors but more as extended chapters of their daily lives.

As I thought about this loss I remembered a dream I had the night before about my dad. The details were fuzzy but my dad was looking at me with a grin that was wide and open and he was pleased. With what, I can’t remember, it was something small and simple but what came through in the dream was this sense that he was happy and what made him happy was something inconsequential. His lit up face made me feel like all was right in the world and it made me feel joyful. My mom was also in the dream and she was talking about a shower (yes as in bathroom) she had just seen and how lovely the little curtain was and wasn’t it done so beautifully? It was a claw foot tub with a nondescript curtain but it charmed her and made her happy. In the light of day my take away from the dream was that as complicated as both my parents are and were, they shared with my sister and me a sense that joy can be found in the small things. Yes, yes, yes, we all know that right? But this was an interesting connector as I grappled with a heart swollen with love, a vague sense of loss and a deep sense of joy.

It all felt stupidly simple as I ran and breathed, cried and smiled. This is life, it’s love and loss and joy. When you get the right balance of all that, it’s bliss. It feels really good. The second you reflect, that sense of loss shows up because you know that bliss is fleeting. Who knows when you will capture it again? What if you can’t?

Part II (written the week of September 3)

Like I often do, I write in a great spurt and then drop it for a while. I wrote the above 2 and a half weeks ago. Our kids are back at school and we are getting back into the school rhythm. I have spent the last few days in a dark place as I gear up for scans next week at MDA. Reality has hit me squarely in the gut and I haven’t been managing my fear all that well. I’ve been snappy and distant. My thoughts have centered around the what ifs. What if my cancer has grown in new places? What if the radiation didn’t help at all? What if I have run out of treatment options? What if being off systemic treatment (chemo) since mid May was a bad idea? Today though I am in a better place. I have to get a scan, this is how I know what I’m dealing with. I think I still have treatment options. Aside from a lot of sensations in and around my liver that worry me (which can mean something or mean nothing), I feel well. All I can do is get the information I need to inform my next decision. I will add here that I really want to stop having cancer. It’s been almost 5 years and the lines on my face and Charles’s face tell the story of the toll it has taken on us. I am willing to do whatever it takes to continue to live with this but it is my utmost wish to find curable treatments for Cholangiocarcinoma for me, and for so many others that are living today with this cancer. This is my particular cross to bear. Trust me, if I didn’t have cancer, there would be some other shit taking it’s place. My shit isn’t any worse than yours or better. I am challenging myself to show up the way I know I can in my story. I didn’t do so well over the long weekend. I let fear win. Yesterday as Charles prepared to leave town for work this week I made myself come back so I could connect with him and tend to our relationship. I did this for him not for me but in so doing, I pulled myself out of the funk I’ve been in the past few days. It may be temporary. Fear may win again later today or tomorrow. Just like those moments of bliss, it’s unpredictable.

Being a grown up is harder than I thought it would be in some ways. Honestly I think I want to go back to Maine and paddle board with the seals and sit by the fire outside by the ocean with my family. I want to toss all the cell phones in the garbage and do puzzles late into the night with my sister. I want to sit at the kitchen table at my sister-in-law’s and chat with my niece about her life and then jump off their dock with family in tow and yelp at the cool and delicious water. I want to watch Cole man-handle Phin with all the love and sweetness these two cousins share for each other. I want to see my mom sitting on a lawn chair on the deck with the sea in the near distance, feet outstretched reading a good book. I want to play croquet with Charles, Gran, Clia, Cole, Phin, Becca and Steven and watch Clia and Gran cheat and Phin try to catch Cole who usually wins. Oh wait. I did all that. We did that. We got to do that.

Now we’re back at home, in Austin. We love it here. It is home. I’m trying to find the lens that makes me feel like all things are possible, the way I felt while we were on vacation. I think that lens shows up when I exercise, do things for others, clip my roses, and stay busy. (not busy worrying, that doesn’t count).

I thought I had a big epiphany to share. It turns out that I don’t. What I know for sure is I had a really good time on the east coast for 5 weeks with the people I love so much, in places that are beautiful. All those places were extra brilliant because of whom we got to share them with. So thank you friends, and you know who you are, for hosting us and being with us. Thank you Mom for an unforgettable and special trip to Maine. Thank you Charles and Cornelia for another sweet week at your Farm. And thank you Kate, Karen and Lydia Butler, Susan and Willi Bank and Sophie Reed for coming to see us in Walpole.

A very special thank you Matt and Kelsey for allowing us to visit Knollcrest, now named Wanderwood. My parents rented Knollcrest from 1970-1974. Their first summer there they spent 3 months, I was 7 months old and Becca was 4. The 3 subsequent summers my parents enjoyed this special house complete with barn, chicken coop, guest house, fields, woods and a private entrance to Pemquid Pond with friends and family for a few weeks each summer. The property which had been in the same family for 3 generations was up for sale a year and a half ago. The house my mom rented for us this summer was about 15 minutes away from Knollcrest which resides in the town of Nobleboro, Maine. We all have the most wonderful memories of our time at Knollcrest and we were anxious to visit it this summer to see what has become of it since going up for sale. We feared the almost 100 acres of land that surround the property would be subdivided and all the magic of this place would be gone. We rolled down the familiar drive and descended on Matt and his family who were busily putting a new floor on the barn and getting the outside ready for Matt and his fiance Kelsey to marry the following weekend. Matt graciously let us go through the house and walk the land including the little walk through the woods to the pond my sister and I remember so well. Matt and Kelsey are in the process of turning this special place into a sustainable retreat center for family gatherings. Both graduates of Colby College they are an ambitious duo with a vision. It was incredible to see with our own eyes the love and attention this couple was dedicating to this place that we hold so dear to our hearts. I think it was especially nice for my mom to see it again and to know that’s it’s in good hands. Wanderwood will open in 2019, it you want to follow their progress they’re on Instragram: Wanderwoodmaine.

Part III -Today

I know many of you come to this page for updates on my health. I am currently sitting in a blood draw room at MD Anderson waiting to get my port accessed for my scan tonight. I had to beg for them to take me as they had already technically closed. It’s quiet here at night but just as depressing. I have been walking the halls with tears rolling down my face as I am really pretty scared of these results. I’ve had a lot of odd sensations around where I had the radiation and I’ve been off chemo for 4 months so I’m fearful my cancer is on the move. It will be 5 years this November since my diagnosis. I’ve been at this for almost 5 years which is hard to believe. Today I feel really bitter about my situation. I am angry that I am sitting here in this place I hate, 3 hours away from my family. I am sad that my children are missing me and my husband is scared too. I am pissed I got this rotten cancer that doesn’t have a cure. I am angry that I have to spend so much of my time and energy in doctors offices, infusion rooms, waiting rooms. I am weary of the cycle that is my life now. I want to wake up tomorrow and not have to go see a man that has looked at a picture of my insides and wait for him to tell me what I have to do to try to stay alive. What shitty, toxic treatment I have to do. I want to just live my life and go to the doctor every year like most of you.

Rant over.

I scan at roughly 8:30pm tonight. Doctor appointment tomorrow at 3:20pm. Charles will drive to Houston tomorrow to meet me. I will update when I can.
All prayers and good energy from the Universe welcome.
Xoxo,
Hilary

PS – I’m sure there are plenty of typos here but I had to publish this before there was a part IV.

Well friends, it’s been over a year since I’ve written which I can hardly believe. I’m sorry for my silence. When my cancer recurred in March of 2017 it was like being diagnosed all over again and I think I got jaded. I just didn’t feel l had anything worthwhile to share and it all felt pointless to write. I am ready though to get back to it.

Here is an update on my health:
I have been doing chemo for the better part of the last year. Thankfully my body has responded well once again to the same drug combination I did 4.5 years ago. (Gemcitabine/Cisplatin) In a few weeks I will do SBRT radiation to the 2 tumors we see right now in the liver. At recurrence we saw 5 liver tumors and had a few lymph nodes outside the liver with cancer. Those 3 liver tumors are still probably there, but chemo has shrunk them enough so we can’t see them. Still have lymph nodes but they are smaller.

After radiation (which is 5 treatments) I’ll do some more chemo and then we’ll see what’s next.

Chemo has been tolerable. I get it every other week. On infusion day I feel a bit icky then the two days after I feel tired and not so great. After that, I feel back to normal. I have gotten a little nephropathy this time which I hope is temporary. I walk to and from chemo instead of running. I am not in running shape at all! My kids think it’s funny that I can look at the calendar and know which days I won’t be feeling well. It isn’t ideal to lose 6 days a month feeling not so great but it’s what is keeping the cancer at bay. At some point chemo will become too toxic for me so better treatments and ultimately a cure sure would be timely.

Charlotte and some of her friends are having a lemonade/bake sale fundraiser tomorrow (Tuesday) for The Cholangiocarcinoma Foundation whose mission is to find a cure for bile duct cancer. The kids made signs today and they’re really excited to contribute to this cause. If you are local, come on by at 4:00 to the corner of Preston and Harris!

I promise to get back into the swing of writing again. We are all doing well. Life is normal with cancer playing it’s part.

Nite, Nite.
xoxo Hilary

First of all, thank you to Jenny Reed and all those who contributed to “hugging strangers”! I did it and boy that is not easy.. but was fun once I did! Definitely forces one to make a real connection and memorable moment in time. Forces you to break from your pattern and be present, something that I personally loved about doing it.

Next chemo is this Thursday, and the cheer is inspired by an old friend of Hilary’s, Steffi Dehne Thibault. Steffi just had her 30th high school reunion (Germantown Friends School in Philly) and was scanning photos and the idea came to her to do a “first with Hilary.”  Hilary was the first person I met at .. or Hilary was the first person I told xyz… you get the idea. I am going to expand on it a bit, in case you do not have a 1st with Hilary, but one of the things that my sister is good at is connecting with people and making them feel comfortable. You can also write in how you met Hilary and why you connected or what has kept you connected.

Feel free to send me a few lines, if you have any photos even better. I’ll try to put a little book  or something together.

Stay cool and please email to me Becca Dobberfuhl by Tuesday, June 13th 

xo becca

Some folks were not able to send Jen Reed their info. because her email was full.  Please email to:

jennicholsreed@gmail.com Jen Reed

I know I have not done with yet, but there is still time… takes 5 mins.

Details: For Hilary’s chemo cheer on June 1st please take a picture of you, your partner, your kids or all of the above hugging a stranger. Any combo works. Please email to me by May 26th. I will present her with her “Hugging a Stranger” compilation on June 1st. If you feel like writing where you were and how the recipient of your hug reacted when you asked or just hugged he/she that would be an added bonus.
Thanks, everyone.
Jen (Jen Reed)

Sorry for 2 cheers so close to each other but for Hilary’s chemo in early June please read below:

Hello “lovers” of Hilary.

Hilary as many of you know is a hugger and a giver of love. Since she was a little kid she has always been incredibly affectionate. She gives the best, tightest, longest and most meaningful hugs. Her hugging and physically reaching out has not only continued since her diagnosis but has grown stronger and has been spread far and wide. From the nurses who take her blood, the person/s doing her scans to med students and the multiple Drs. she has encountered Hilary has hugged each and every one, many of them multiple times. Some don’t know what to do when she comes to them with a smile and open arms. They look bewildered and then they are hugging her back, some awkwardly and some not. It is a beautiful sight to see and sometimes pretty funny.
For Hilary’s chemo cheer on June 1st please take a picture of you, your partner, your kids or all of the above hugging a stranger. Any combo works. Please send to me via email, Jennicholsreed@me.com by May 26th. I will present her with her “Hugging a Stranger” compilation on June 1st. If you feel like writing where you were and how the recipient of your hug reacted when you asked or just hugged he/she that would be an added bonus.
Thanks, everyone.
Jen (Jen Reed) email: Jen Reed