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.