Thank you to everyone who participated in the last cheer, and especially to Carolyn Grant who texted me a few nights before chemo to ask if I would send out a request for a cheer! Happy Belated Mother’s Day to you all.

Hilary has Chemo next Thursday and Anitra Richardson is the cheer leader. Anitra’s cheer idea is a “Box of Sunshine.” With school ending next week for Hilary’s kids and summer commencing, please send Anitra your Box Of Sunshine maybe packed in Yellow by Wednesday, May 24th. 

Anitra’s Address is 1004 Gaston Ave, Austin 78703, Email: anitrarichardson@me.com,
Phone: 512-506-1207

Whatever makes you think of sunshine, happy, summer, maybe beach or your summer happy place. Here are some ideas from Pintrest: Box of Sunshine Ideas

xo becca

Good Morning – we were going to skip cheer this week, and sorry this is last minute but if you have a moment to reflect for a bit please do!

Please email Carolyn Grant a few lines about why you think Hilary is an awesome mom. Maybe a time you have seen her in action with her kids or a funny story you remember that highlights her motherhood.

If you can please send to Carolyn by Wed at 12 noon. grantsinlondon@yahoo.com 

Thank you!

xo becca

First of all, thank you to Katharine Lord, for the idea, and 70+ others (The HERD) who contributed to Hilary’s kickoff Cheer! Hilary’s “elephant necklace” looks great and she is so blessed to have all of your support behind her.

Also thank you to Carolyn Grant for leading the “warrior” cheer last time. Carolyn made a book of all the photos to give to Hills and wow what a collection of warriors!

Next Up ….

Hi Friends of Hilary: I’m scheduled to help with Hilary’s cheer for her next chemo on May 4th. I thought a butterfly theme would be beautiful, hopeful and fun.

If you can mail or email me a cut out of a butterfly (any size, anything you want to make it out of, however you want to decorate it) with a note and anything you want to write for Hilary, I’m planning to cover a box with your butterflies. We’ll send the box home with Hilary after her chemo on May 4th. She & her family can open up the box anytime they want and release a couple of dozen real butterflies that will be hiding inside the box. That’s the plan and I’d love your help!

Operation Butterfly Instructions:):

BY TUES – May 2nd – Please email a photo of your homemade butterfly and note and I’ll print them out, please email to: sarahjwheat@gmail.com  OR
mail your butterfly to my home address (1806 Westridge Drive, Austin TX 78704) so they arrive by May 2nd. – Thank you! – Sarah Wheat

MEALS – If anyone would like to sign up to bring the Saltzmans a meal, please go to the following link to sign up. They have requested meals on Mondays and Wednesdays for Charles and the kids. Homemade meals are preferred 🙂

http://www.CareCalendar.org/logon/166918

(password is – 7599)

CHEER – First of all, what is Chemo Cheer? and a Cheer Captain? Anyone can lead a cheer, no need to be in Austin. Just come up with a theme and email Becca at becbrudobb@gmail.com or text to 512-633-8359. I will send out the cheer theme to the blog and help you execute it, if you are out of town. If you want to sit with Hilary at Chemo please contact either Robyn Malloy (512-585-6438) or Carolyn Grant (512-212-0555)

Cheer is: A basket, bag, box or something to hold the “Cheer”, A collection of things and or thoughts from friends and family (CHEERLEADERS), A theme for each “Cheer”, and A Captain or Team Leader for each “Cheer” to decide the theme, round up the cheerleaders and deliver the basket. The surprise “Cheer” is dropped off at Texas Oncology the morning of Hilary’s chemo (Texas Oncology – Midtown is located at 901 W. 38th St, Suite #200 – (512) 421-4100)

Thank you all for making this fun and supporting Hilary. Any questions, send me an email or text 512-633-8359  OR becbrudobb@gmail.com

Best – Becca

Chemo Cheer is on again! This week Hilary’s good friend Carolyn Grant is leading the cheer – see note and request from her:

Dear friends of Hilary,

Chemo is scheduled again for Thursday this week and we are working on a cheer that we are hoping you can all join in on TODAY and TOMORROW at the latest. Hilary is reading a book called Warrior Pose by Brad Willis. When I saw the cover of the book, it gave me the idea of all of us taking a photo of ourselves in a warrior pose. It can be a selfie (which if you can do that – you’re better at yoga than me) or someone can take it of you, or it doesn’t even have to be a yoga pose – it can be your best warrior face. Just don’t overthink it. Send your photos to me at grantsinlondon@yahoo.com and I’ll print them in a book for her to page through this Thursday. Don’t delay! Cut off time: 12 noon Wednesday, April 19th.

Thank you!
Carolyn

https://www.verywell.com/get-fierce-with-this-sequence-of-warrior-poses-3567198 (warrior pose images to jog your memory 🙂

Hello!
Sorry it’s been radio silence. I’ve gotten a port in, had a liver biopsy, and flown to Boston to see a doctor there among other things. A big shout out to the amazing friends that came to support me in Boston. Dana, Jenny and Paige drove from Vermont, Erin came from Acton, Neil from Lexington, Dina and Patrick from Braintree and Ham and Jon from the Cape. It was such a joy to see all of you whom I love so much. I really, really, really appreciate how you made an otherwise un-fun event something fun and memorable.

Dana, Paige, Jenny and Erin all came in the room to meet Dr. Zhu in Boston with me and fired many an excellent question his way. Mass General really made us all feel welcome.

I am needing to get to bed so I will spare you all the details but tomorrow I start chemo here in Austin. I’m doing the same drugs I did last time (Gemzar/Cisplatin) and I get the treatment on day 1, day 8 and then a week off and that is one round. I will scan after two months and hope that it will work for me again to get the lymph nodes under control (as in hopefully shrinking them all away) and having some impact on the liver tumors. If things are moving in the right direction after 2 months I’ll stay on this for 4 months and then we’ll have to figure out how to target the liver tumors. Probably not surgery again. If I don’t respond to the chemo then we are probably looking at trials. I’m trying to take it one step at time because frankly the long view makes me sorta freaked out.

So, keep all those prayers coming my way, I appreciate all of them and all the love that surrounds our family.

There have been some very dark days and I want to thank you girls (you know who you are) for all the research and information gathering and energy you have given to my treatment plan and for all the love you’ve poured in my direction even when I’ve not been terribly receptive at times. The beauty of old friends is their depth and knowledge of how you operate. Still though, it’s very hard to manage one’s own grief and fear while also trying to help a friend manage their own and I have to say, my friends are so loyal and amazing in this way.

I also want to say thank you to Katharine Lord for wearing so many hats for me but at the core, for loving me so well during all this upheaval. I can’t name everyone but I am so grateful for the people that I have in my life, ALL of you. Thank you. It helps me a lot to stay focused on what I need to do.

Tomorrow is my husband’s birthday and Phin, Char and I are looking forward to a family dinner at home celebrating the man who champions us all and is the center of our universe.

Nite, Nite.
xoxo
Hilary

Dinner at Stella with Neil, Dana and Paige

Breakfast in Beacon Hill with Jon, Erin, Patrick, Jenny, Dana, Dina, Heather and Paige

Waiting for Dr. Zhu Hilary, Paige, Dana, Jenny and Erin

Hi Everyone,
A quick recap of the week. It’s past my bedtime…

The appointment with Dr. Javle my oncologist at MD Anderson went well. He was “optimistic” we could get this under control and reminded me we treat it as a chronic condition. I still have a hard time with that, I’m in the curing corner still but I’ll take it. He would like me to do 4 months of the same chemo drugs I did when I was initially diagnosed (Gemcitabine and Cisplatin). I would scan at 2 months and then after 4 months we would asses how the lymph nodes have responded. If they have shrunk considerably or even gone away we can then decide how to treat the liver tumors. Since I responded well to chemo last time, we are hopeful I will do so again.

I will need another liver biopsy to see how my cancer has changed, what markers I have which could help dictate the direction of future treatment. I will get my port back in on Wednesday, early morning, April 5. I boldly had it taken out 6 months ago. HA HA HA. Oh well, it felt like the right thing to do at the time.

I am getting a second opinion from Dr. Andrew Zhu at Mass General in Boston on April 7th.

A huge thank you to Katharine Lord and her aunt for getting me a short list of doctors to look into. A round of applause for Dana Valentine for countless phone calls and emails to get me set up at Mass General and in contact with the scheduler and another halo please for Matt Strobeck for once again wielding his magic wand and connecting Dana to a doctor who knows Dr. Zhu so we could get in to see him quickly. And my angel Martin Slagter, who has blazed a cancer trail like no other, has been critical in getting me in front of good doctors, making introductions and taught me how to “triangulate” my treatment. It was Martin that sat with me 2 days after my latest scan at a coffee shop and held my hands as I cried, and peppered our conversation with little nuggets of wisdom and compassion. It was Martin that left me that morning and went home to do research I was too weary to do to help me get my plan together. And Becca, my kick ass sister hasn’t missed a beat and compiled records and dates and scans and blood work to create a summary of my cancer over the last three years. It’s tedious work and she does it with such efficiency. Then she’ll come over and sit in my living room and read off a list of things we need to get done and has it all organized. She creates the track then gets behind me and pushes me down it! To Shahnaz who cooked for us for that first year of my illness, who showed up unannounced at my door because she’d read on my blog that I was sick again, and offered to cook for us again without pay. And my mom who may have one of the hardest jobs, seeing her daughter go head to head again with this illness has been steadfast in her faith that I will be ok. And a girl needs to hear that from her Mama. There are so many others to thank, just know that we feel the love, we really do. Whoever my anonymous benefactor is who gave me 4 massages with Negeen, you know me well, what a treat! Thank you, thank you.

We also had a 2.5 hour phone call with Dr. LaValley, the supplement guy as well as out of the box cancer guru. He generated some good ideas and we’re percolating on those.

There are new treatments since I was diagnosed 3+ years ago. We’ll see which ones I will end up trying after chemo. I’m trying to figure out who is doing cancer research for my type of cancer (cholangeocarcinoma) so I can then figure out how to raise funds for them. Ok, I’m not really doing that, but I think about that because these little rare cancers aren’t getting a lot of press time and you know, we have rights too…In an ideal world I would be active in that area and maybe I will be at some point. At this moment in time all my energy is going towards getting my treatment plan together by getting in front of the people who can best help me. Anyone who has dealt with an illness knows, this is difficult at best and entirely daunting and draining. The rest of my energy is spent being a wife and a mother. I thought I would try my hand at developing some kind of career for myself but it seems cancer is calling again and at the moment it is a full time job. A job I really don’t want. And the pay is shit. When I was first diagnosed I remember being floored at how expensive it is having a serious illness. We have really good insurance. In the last 10 days we have paid roughly $2300 out of pocket because of cancer. Next week with the port placement and trip to Boston, we’ll add to that. How is the average American supposed to manage that? We are not rich but we aren’t poor and if it’s a burden to a family like mine, it’s far worse for many others. It’s not right. OK, I’m stepping away from my soap box.

On a bright note, friends Dana, Jenny and Paige will who all live in Vermont and Erin who lives outside Boston will meet me in Boston on Thursday to go to my appointment with me. This turns a pricey one night medical trip into an entirely different thing for me. I can’t wait to see them.

I was pretty stunned the first few days after I found out. I’ve cried why me, felt hopeless and felt just plain sad. I’ve had my heart break over putting our kids through this again, watching them be brave and being both proud and shattered that they must walk this path. I’ve wanted to take Charles’ face in my hands and look into his green eyes and say I’m sorry for the heavy burden this causes us all to carry. I don’t know if it’s because we’ve been through this before so the learning curve is faster or if I’m in the eye of the storm and I just can’t feel the fury that swirls just past my grasp. Today though, I’m ok. Dr. Javle said to me when we were in Houston, “Well Hilary, you look great, just the same as when I saw you a year and a half ago” and I replied, “I am the same, I just have a little bit of cancer”. I will try to keep that balance. Katharine Lord reminded me, this is NOT my new full time job. I need to do my life and on the side, do what I need to do to manage (or cure??) cancer.

I haven’t started treatment so the rhythm of my life hasn’t been fully altered yet. I do have some pain from the tumors and enlarged lymph nodes. I have lost some weight but am holding steady, trying not to go down that slippery slope of no appetite and big weight loss. This shit is real and sometimes that’s alarming. Summer plans will have to change but we will still manage to do fun things. And on and on we go.

I’m very tired, I’ve stayed up too late. Today though was a good day. We have 5 kids nestled in our tiny house, OPC’s (Other People’s Children) who bring me sweet joy, all their long limbs and breathless chatter.

Nite, Nite.
xoxo Hilary

Well friends, it’s been a very long time. I have stayed away from the blog, wanting to be less in the cancer mind-frame and also feeling nervous that my cancer-free status wouldn’t last. Unfortunately, my nerves turned out to be correct and I am no longer cancer-free. I got scan results back yesterday and the cancer has showed up again. This time it went big with 5 tumors in my liver and many cancerous lymph nodes in my abdomen. I am sad, terrified and pissed off too. I will visit my oncologist in Houston, Dr. Javle on Tuesday to go over treatment plans. I dread that visit, dread that he will look at me with pity and knowing in his eyes that this is bad. I have not found my sea legs yet. I have not found that hope I harnessed so well before. I feel jaded and yet I know I must tune into that voice in my heart that says I will be ok.

I will need chemo for sure. My response to chemo before was very good so I am hoping it will be again. I can’t even really speculate right now what the coming months will entail.

I’m exhausted, my new reality is settling in and I am finding it pretty dark. Give me some time to find the light again. The kids know and have taken it well. We have of course not given them every detail so as not to scare them. Charles is pretty shattered too so please reach out to my husband. He is in need of support although he would never ask for it.

I will give updates as I get them and hopefully find my voice again. I just feel sort of numb at the moment and so very scared I won’t get to see my babies grow up. But see, that’s not acceptable. I need to be here, so I will do all in my power to make it so.

xoxo
Hilary

Thank you cousin Cynthia for texting me and remembering I was due to have a scan at Baylor around this time. It reminded me that I have been remiss in updating all of you. My apologies. May madness sucked me in and life in general made me want to pull out.

I was uncharacteristically quiet about this last scan. I even drove to Baylor alone and had the scan then drove home the same day (5 hours round trip). Dr. Curley was kind enough to agree to an over-the-phone appointment the following day so Charles and I didn’t have to drive to Houston for a 15 minute office visit to get the results. This also I noticed resulted in me not wetting my pants. An unforeseen bonus!

The first CT scan I ever had was done here in Austin 3 days after I learned I had cancer. I remember it so vividly because it was one of the most terrifying days of my life. The scan would confirm or deny whether or not the images the ultrasound picked up were in fact cancerous tumors. In retrospect I’m sure there wasn’t much doubt that what we initially saw on that ultrasound was indeed cancer but I had spent the entire weekend scouring the internet for what else it could possibly be. I desperately needed to know it could be something benign that wasn’t deadly.

Lying on that hard cold table I was shaking violently. My body convulsed in measured ripples, my teeth audibly chattering despite the warm blanket that was draped over me. The technician was kind and spoke softly and assured me the scan would be quick and easy. I wasn’t scared of the scan itself, I was terrified of the results it would churn out.

This last scan, two weeks ago today didn’t hold nearly the weight of that scan 31 months ago, yet I found myself shaking as I lay flat on the table preparing to play peek-a-boo with a space aged doughnut hole. The whoosh whoosh of the cylinder as it circulates is so familiar to me now yet it’s not my friend. It can betray me at any time. I had to talk to myself so my breathing would settle, telling myself that all I have is here and now. “Be in the now Hills. Breathe. Find your true self and the rest will unfold.”

Five minutes before I lay down on that table I was changing into the hospital gown in a tiny room with six lockers and a mirror. I called Charles at work to tell him I’d read all the recent pathology reports that morning from the scans done during my infection last fall and realized that lymph node we’d seen on the scan 2 months ago hadn’t been there during my infection. This meant the enlarged lymph node was new, post infection and that meant it couldn’t have been residual inflammation from the infection. Charles knows that I am not a doctor but that I sometimes like to play one on TV. He calmly told me it wasn’t a great idea to extrapolate these kinds of conclusions after I’ve read reports I’m not so great at interpreting. At this point I am crying and coming unhinged. He let me be scared but refused to be scared with me.

I think it’s important to shed light on what it’s like for the spouse of a cancer patient. On this particular day of my scan we had a normal morning, getting breakfast, making lunches, getting our kids off to school. Charles drove off to work and shortly after he left I got in my car and headed to Houston. Charles carried with him all day the anxiety that scans represent and in addition he hoped I would drive safely there and back, not be lonely, sad or overwhelmed and prayed the news the next day wouldn’t be awful. Charles has all the stresses of his daily job, meetings, emails, plus showing up in the way that’s expected. Then his phone rings in the middle of his work day and it’s his wife who is crying because she’s suddenly faced with uncertainty. She is also very clear that she has proof things are bad. She is whispering into the phone and being very certain that the words she is speaking are facts. She wants reassurance that things will be alright but you see she has all these facts that are very concrete telling her things are not alright. Here’s the important thing I want you to know: there are so many things my husband could have said to me that would have made this situation worse and so few things he could have said that could have made it better. How do you help the person you love while she is sinking into the dark abyss of her own mind? How do you keep yourself from falling in after her?

I actually don’t know how Charles manages to keep his composure when these scenarios occur yet he does so with extreme grace. His refusal to believe the stories I tell him which are based in fear and not fact is one of his greatest gifts. He could be short with me because you know, he’s in the middle of ten things at work and has a meeting in 4 minutes. (which was the case when I called). He could unleash his own fear and escalate the situation so we both felt worse. He could just shut down and be unavailable. Somehow he is able to transcend the entire situation and convey his love, his total devotion and his belief that we will be ok. THEN he has to hang up the phone, banish the image of his crying wife in a hospital gown 165 miles away and walk into a meeting like his entire life isn’t hanging in the balance.

All of you spouses/partners and parents who live with cancer patients, you are my heroes. Nobody, including me has any idea how difficult it is to walk in your shoes. There are so many emotional land mines to navigate and you never know when one is going to blow up in your face. It’s a terrible reality of cancer. I am so very grateful to my husband for being my partner in all this. He didn’t sign up for this, I’m so sure we didn’t ever see ourselves in this scenario, but man does my man shine.

SO, scan results from May 16th:
The lymph node we saw back in March outside the liver is still enlarged. Contrary to the facts I gathered from the previous pathology reports that same lymph node was there during the infection. Dr. Curley looked back at the images themselves and saw it. The radiologist though it had grown some since the scans from last fall, Dr. Curley did his own measurements and disagreed. Scans are highly subjective. No other areas show any cancer (liver, lungs). Either that lymph node is enlarged because of the infection and or all the other disturbances that have taken place in that area (the temporary stent that was put in then taken out when I had a bile leak post surgery in the Fall) or it’s cancerous. I will go back in 3 months, mid-August to scan again and see what we see. If it gets bigger that’s a red flag. If it gets smaller or goes away that’s good. I will get MD Anderson to do an over-read of the scan I just did and see what they think it means.

Charles felt relief at the report, me – not as much. I’m trying not to focus on it. The kids are out for the summer and I am looking forward to less of a schedule.

That’s it!

It’s well past my bedtime.
Sweet dreams,
xoxo Hilary

13th Anniversary – May 24, 2016

I asked for help and boy did you deliver. I got such beautiful texts, emails, photos and helpful quotes, prayers and LOVE. Oh the love! With each message I felt stronger. My anxiety persisted but knowing all of you were praying for a smile on my face today made me feel connected to all of you and the universe. I was and am rooted in the power of love.

Look what we did!

Scan report: Mostly good news! There was a lymph node outside the liver that is slightly enlarged but hopefully that’s due to the liver infection aftermath. Nothing seen on the liver or lungs.I will have an over-read of the scan at MD Anderson, and will rescan at Baylor in 2 months.

The other wonderful part about yesterday was having dinner in Houston with an old friend of Charles’s from his elementary school days in Metairie, Louisiana. Charles has fond memories of the years his family lived there and his stories from those days always center around the little boy antics of Andy Wisdom, Mason McCarthy, Andre Mauberret and Rob Bradshaw. Baseball and pee wee football by the train tracks, bike riding, throwing plastic bags filled with water at wasps nests and torturing Andy’s little brother Matt by calling him Baby Hungry and Matt angrily retorting “F***ing Askholes!”
Charles left Metairie after 6th grade and Andy Wisdom had been aware of my cancer diagnosis through Lanier Watson, a former teacher of Andy and Charles and family friend of the Saltzman’s. When Andy was diagnosed with Lymphoma a few months ago Andy got in touch with Charles. Andy and I connected as well and realized we would all be in Houston the same 2 days for scans. What are the chances?
Andy, his wife Maria, Charles and I had the most wonderfully sweet evening together. It could have been an awful night of waiting and worrying, instead we got to spend it smiling and connecting with Andy and Maria. Thank you Wisdom’s for dinner and for all your warmth and great ease. We so enjoyed our serendipitous meeting.
Thank you friends and family for all your continued prayers and devotion to our family. There is no greater gift then to be loved. We are grateful and blessed.
Love Rules.
xoxo

Hilary, Maria, Charles and Andy