Hi Everyone,

Well, I am almost 5 weeks out from surgery which is hard to believe, mainly because I don’t feel like I have had 5 weeks of healing. I am not at all where I thought I would be. Go figure, I imagined I would be pretty well healed by now and feeling more normal. That is really far from reality.

I know I haven’t given myself nearly enough down time to properly focus on healing. Now I am trying to do this by shutting off my phone, staying at home while the kids are at school and generally taking it easy. This is truly hard for me, being in the stillness. I am also not very good at prioritizing which means I would rather think of others first and put my own needs further down the list. This is really a bigger lesson for me, one that I have been learning all year throughout this journey. I am a fairly reactionary person and while that can mean I’m flexible and accommodating, it can also mean I am denying myself the opportunity to plan more and get more of what I want and need. So how this relates to my current situation is that I want and need to go inward, to focus on me and what I need to heal and feel strong both emotionally and physically. This means I have to say no to certain things and use my alone time to accomplish my daily goals.

This also means once again, being vulnerable and asking for help and admitting I don’t have everything under control. Ugh. Really? Ok, the truth hurts. I am floundering a bit however I know this is normal and I am not beating myself up about it. Yesterday I went in to see my PA Katharine Lord because my belly looks like I’m about 6 months pregnant by the end of the day. She ran my blood work and checked me out and confirmed what I already knew. I need more protein in my diet. The liver produces albumin and since my liver is still growing albumin production is low. An albumin deficiency causes swelling and edema. That’s because without albumin trapping fluid it tends to leak out of the blood and into the tissues. Albumin is a protein and it provides the body with protein needed to maintain growth and repair tissues. Sooo, protein pounding is now happening.

The second part of my visit with Katharine consisted of a long conversation about where I am mentally. Katharine is a gifted PA, she’s cracker jack at her job. Even more than that though she has become my friend and has gotten to know me very well. She’s always in tune to much more than my medical needs. As we peeled back the layers of my psyche, we landed at this realization: I’m at a critical point in my healing where I am looking ahead to a life that incorporates all the lessons I have learned but I am also looking back at what I have been through and trying to digest and process all of it. It’s a lot.

This is where all of you come in. Katharine reminded me of all the support I have had, and all the ways I have been loved. She suggested I take to this blog and tell you all that I still need your support, your prayers and your love. Drop me a note, an email whatever. Please keep me in your prayers. This is perhaps my strongest healing element. I am not riding the social train right now but I do love to hear from you. This next month is big for me, my birthday (the 2nd) and my 1 year anniversary of when this all began (the 15th). I am very much looking forward to turning a year older. I am not sure how I will feel at the one year mark, I bet a lot of things. I do know that the memory of that evening when I got the call that it was most likely stage IV cancer moves for me like a movie in slow motion. It was awful and I never want to feel that darkness again. I have had so much light since then. As I recover and slow down and feel my limitations I am reminded more of those dark days and I am anxious to banish them forever. I know that before I can do that I have to tune in to the message it’s sending. In order to tune into the message, I have to tune into myself. The root of the word Heal means “to make whole” . Mind, body, spirit – healing of the entire self encompasses all three of those things. I am going to have to be patient as I tend to those 3 elements.

xoxo
Hilary

Time for another update! I went to Houston on Tuesday for my follow up visit with Dr. Curley. All went well, I got the dreaded drain out, FINALLY which I am very happy about. My blood work looked good with the exception of my protein which was too low. This is actually very important as my liver needs protein to grow and it will beg, borrow or steal protein any way it can get it, including my muscles. So I must ramp up the protein. This should also help my energy level.

I got the path report back a while ago from the surgery and I guess I have been reluctant to post it for some reason. I think the whole thing is anxiety provoking for me despite the fact that the report was good. So here goes:
All 4 tumors that were in the right lobe of the liver which as you recall, was entirely removed, showed 40% – 50% active cancer. That means I had a good response to the chemo drugs because 50-60% of the cells died from that treatment. Remember that miraculous PET scan? Not really an accurate picture of what was going on, BUT we have removed all the things that had knowable cancer in them through surgery. He took out 2 lymph nodes, one containing 20% active cancer, the other benign. There were clear margins and no growth in the blood vessels. When I asked Dr. Curley how I should feel about the report he told me “it’s the best you could hope for, there’s no measurable tumor you are healthy and doing well.”

Funny, looking back on this last year (a full year being this November 15), I feel like it was all pretty doable. The beginning was the worst by far, the fear, being catapulted into a reality I so desperately could not grasp and the pain, hospital stays, and learning how to manage the chemo, just to name a few things. Now, I am facing a few more rounds of chemo most likely, continuing to recover from surgery and oh yeah, trying to live my life differently. That’s the kicker. I know my truth, my soul, my spirit will not thrive and be healthy unless I can incorporate the lessons I have learned. Yet I feel myself falling back into old patterns and it scares me. Am I cancer free now? Yes, I believe I am. Now that I have been stripped of my innocence, I can’t pretend to not know the things I know. Can you remember a time that was magical for you? A summer away from your family as a child, a weekend retreat, a meaningful interaction with someone that made you go A-ha! Something that changed the way you see your world? Something that shifted inside you that felt epic and important? You want to hold on to that feeling, the knowingness that you learned. You want to remember that flicker of connectedness. That’s how I feel about this past year. I not only want to carry it with me, I want to live it. I want to incorporate it into my daily life so I can feel it’s greatness. This is so much harder than I thought. As my brilliant and kind therapist Elizabeth said to me a few days ago, this is the when the real work begins. She’s right.

Last night Charlotte was crying in her bed and Charles went in to see what was wrong. I gave them 5 minutes then I went in too. She had told Charles she wished that she could go back to when she didn’t have worry, to before I had cancer. After those words landed like a lead balloon on my heart and I felt like sitting on the floor so I could rightly sob, I dug deep for my Mommy wisdom and proceeded to normalize her feelings (thank you Masters in Marriage and Family Therapy) and just be with her in her sadness. I hate that along with my innocence my children must lose some of theirs too. What I am grateful for is that Charlotte spoke her truth and felt safe enough to convey this to us. I was worried about how much she was processing because she has been very social, out with many friends, doing many fun things and not talking much about my illness. She has been keeping herself busy quite on purpose I’m sure. I know my hospitalization made it real for her in a way that had not existed before then. She expressed the need to stay closer to home, to be more in our orbit and we are all too happy to comply.

So, what’s next? I need to schedule a meeting with Dr. Javle in Houston at MDA to discuss when to start chemo and what type of drugs to use. That should happen in the next 2 weeks or so. Until then, I’ll be trying to find my center, grow my liver and generally take one day at a time.

There is a long overdue thank you I must make for this website. When I was first diagnosed, Becca and Clia thought a website would help keep everyone informed and also serve as a place I could write if I so desired. They started asking around and my friend Clayton Maebius put them in touch with Kevin Sweeney a fellow Trinity parent. Kevin put this entire site together for us for free and has been helping us along the way each time we have questions. I am so very thankful that he did this for me. Yesterday I just so happened to be in carpool line for Trinity and Clayton was ahead of me in the next lane. She texted me wanting an update so I walked over to her car. She said I should update my blog and then she said wait, Kevin is in the car next to me. I finally met Kevin and got to give him a hug almost a year later. Thank you Kevin for giving us your time and energy to get this up and running for us, we are so appreciative that you stepped in to help. Thank you Clayton for asking Kevin on our behalf!

One more thing before I sign off. Some of you know that about 7 months prior to my diagnosis I became involved with Beautycounter, a company whose mission is to get safe beauty products into the hands of everyone. I became involved because I want to know what is in the products I use on my skin as much as I want to know what’s in the food I eat or the products I use in my home. Unfortunately, here in the US we are woefully behind places like the European Union when it comes to regulating ingredients that go into our products and this includes labels. There are no laws that govern what a company puts on a label, meaning they can use an ingredient like formaldehyde in their shampoo or lead in their lipstick but they don’t have to disclose that on their label, REALLY?! I am just as passionate about Beautycounter now as I was when I signed up to be a consultant a year and a half ago because the products are safe and they are working with non-profits like the Environmental Working Group to pass laws for stricter regulations. Beautycounter already launched skin care, shampoo/conditioner for kids and adults, and sunscreen. Now they have just launched color cosmetics! If you want to learn more about Beautuycounter and it’s mission, click here:
http://www.beautycounter.com/our-story/?ConsultantFirstName=Hilary&ConsultantID=2470&ConsultantLastName=Saltzman#ourmission

If you want to browse products, here is my website:
www.hilary.beautycounter.com

Ask me questions, share with friends, give as gifts, give to yourself. Your skin is your biggest organ, it makes sense to me to know the products I’m using are safe. Give me an Amen! Ok, end of plug 🙂

xoxo
Hilary

Monday. Our morning was SUCH a Monday. Meaning there were tears (Phin’s) yelling (me) lost backpacks (Charlotte) and tired, cranky, generally unhappy vibes flowing through the house (Charles, Hilary, Phin and Charlotte). We had a great weekend. My friend Erin Nichols was in town, there was an overnight with the Dobberfulh’s at the Hyatt Lost Pines, the Casis Carnival, an overnight for Charlotte with friend Molly, gorgeous weather and generally happy faces. It’s just that with all that fun, Monday morning came too soon and routine came clawing through like an uninvited guest.

We found the backpack at our neighbors and I apologized to Phin for yelling while I drove him to school. This is always important but especially so this morning because Phin is the acolyte this week in Chapel and this morning was the first day. You know how it feels when you have to do something new in front of lots of people, you’re nervous and shaky. I wanted to give him a calm morning so we could get to school early and he could feel in control of his world. Instead he had to change his shirt after getting dressed because he had his old one on and it’s picture day today and I wanted him to wear the one that isn’t a size too small with wrinkles embedded. He changed his shirt but then I had to undo every button on it because he missed the first button on the bottom so the top was mismatched button-wise. I normally could care less but you know, it’s picture day and all. Then the backpack drama which I of course turned into a drama when in fact there need not have been any. Charles had moved on past the lost backpack to using Phin’s old lunch box for Charlotte and her old backpack, problem solved. Not so fast, I hate when things are lost, it really makes me cranky and I become obsessed with finding it…now. Poor Charles, he watches as I flap around slamming doors, muttering, being pissy. All the while I am impeding forward progress and getting nothing but more annoyed. I’ll spare you all the details but lucky for everyone in my family I realized the backpack was at our neighbors and I could finally switch gears. Geez. Sorry family. I promise to try to handle those situations with more grace and less venom.

Bless Phin’s sweet little self, he pulled himself together at school after a few hugs and reassurances from me. I stayed to watch him in chapel and as he walked carrying the Cross with classmate Sara holding the banner, he had a wide grin on his face and all the pieces of our fragmented morning fused back together and I felt like I found my balance. In addition, 1st grader Ben Gillham stood in the front of chapel to help celebrate a teacher’s birthday and as we all sang Happy Birthday, Ben enthusiastically conducted the room and took extreme pleasure in the moment. Ben’s dad Wade also has Bile Duct cancer with his journey starting this past summer. Seeing Ben happy and just being his gregarious self up there brought such joy to me because I know he, like my kids is having to manage far more then we parents want them to. Ben happens to have two pretty amazing parents and his joy up there this morning encapsulates all the ways Debra and Wade are holding and protecting their family as they bump through unknown terrain. Please say a prayer for Wade today as he is more than halfway through his 6 weeks of radiation and oral chemo. This is when it gets really hard. You feel lousy and your reserves are down and everything is hard. Please send him strength. Please also keep Debra in your prayers. It is so hard on the spouse. Not knowing exactly how to help, needing to be there for your kids, your job your life and feeling worried about your love. I know Wade is going to come through this and fully heal but today, now is when it’s really tough.

How am I? Good question. Physically, I feel like I am slowly healing. I am still tired a lot. I still have my trusty drain tube. My appointment last Tuesday was rescheduled for tomorrow because the drain tube wasn’t ready to come out. The incision is starting to heal and I am very pleased with how much smaller it is than I thought. Dr. Curley really did a great job. There will of course be a very obvious scar but as Charles says, it’s my battle scar and it’s a testament to what I’ve gone through. How I love that my man looks at things that way. That he doesn’t wince or wistfully morn my scar less abdomen. Just accepts me the way I am, flaws an all.

My mental state is more complex. I have struggled with some old feeling from childhood, an alone, lost sort of feeling. It’s strange and I have tried to trace its origin or at least make sense of its re-occurrence. I’m sure there are lots of reasons for it. I’ve lost part of an organ for one thing. I haven’t been able to hug Charles and lay on his chest in the morning the way I normally do. These small daily things connect us. I am probably feeling a little isolated from a purely physical perspective. I can’t snuggle my kids the same way or pick up my nephews. I am also still recovering while also thinking about trying to gear up for 3-4 more rounds of chemo which I really don’t want to do. Charles would tell me not to think about that yet and he’s right. I think really the hardest part about now is trying to sort out how I want my life to be. I have learned so much through this process and those lessons are important for my healing, my future good health and my happiness. Like so many pivotal experiences in life, it’s hard to keep a grasp on them. You fall back into old patterns and wonder what you really learned in the first place. I have at least 3 more weeks of liver growing and I need to devote more time and energy inward. As my friend Erin said to me this weekend, you give so much Hilary, maybe you need to take some of your own medicine and do less for others and more for yourself. She’s right. This will be a life long balance for me. I’m a helper, it’s what I thrive on. If I don’t take the time to reflect on myself and find my inner calm I will be swept down the current of stress and anxiety I am all too familiar with and I will deny my body and mind the chance to flourish. My friend Molly wrote a great blog entry on this very thing:

http://wwww.molly-carroll.com/blog

I am incredibly grateful to my friend Trevor Price who flew my friend Erin Nichols here from Concord, MA. Erin and her husband Sam are long time friends – I’ve known Sam almost all my life and we spent so many fun years living down the street from one another in San Francisco. They just moved back to the states after spending 6 years in Sydney, Australia. I surprised Erin this summer with a visit with my kids but Charles hadn’t seen her since they left 6 years ago so it was such a treat to finally have them reconnect. I haven’t skipped a beat with Erin even though we didn’t see each other all that time. You know how good friends are, they are such a part of you that time and distance don’t alter your connection. Erin had never been to Texas and she sure did love Austin. If they hadn’t just settled in Concord I would be working on getting them to move here 🙂 Thanks Er for such a fun weekend. We miss you already.

I will leave you with this quote friend Dana Valentine sent to me this morning. It perfectly sums up what I am struggling with right now. How to heal my spirit fully so that my body can follow. Thanks Dans!

xoxo
Hilary

Good Afternoon!

Clia suggested I do an update as her inbox is starting to fill with inquiries.

I am very happy to report that I am doing well. I feel worlds better then I did even 3 days ago. I think I am over the initial hump of recovery in terms of pain and exhaustion. I am off the most powerful pain med, Hydrocodone. This in itself is a huge improvement because I don’t have the grogginess that goes along with that kind of medication. I still have the lovely drain tube and it’s still doing it’s thing but slowing down considerably so maybe I can get it out soon. I am walking around – had 2 outings yesterday. I am wearing normal clothing and generally if you saw me would probably think I looked pretty normal.

I still have another 9 or so days of no driving. I still need to take it easy, not lifting anything more than 10 pounds and allow myself to be waited on. As I feel better this gets harder as I am ready to start getting back to normal every day things. I do need to remember my little liver is working away at growing each day and I want to give my body all the support I can to grow healthy cells and fight off anything cancerous. Rest, low stress and lots of meditation seem to be the right direction.

Clia leaves in 2 days (SOB)!! I know her family needs her back but I swear if I could concoct a way to have her stay another week I would shamelessly do it. I love her so dearly and I don’t know how I am blessed with 2 sisters that are so darn amazing but I am, and I am not wanting to let this one out of sight. On the flip side, I am so grateful she could be here to help me, cook, shuttle kids, remind me to eat, rest and focus. It’s like having your best friend come stay with you. When Clia leaves I am always left wanting more time. Thank you Sabrina Brown for flying Clia here with miles, we are forever grateful.

The day Clia leaves, my wonderful mother-in-law arrives for a week and I am very much looking forward to her calm, very competent and loving ways to flow over the Saltzman household.

I go back to Baylor to meet with Dr. Curley on the 14th and he will go over the path report. None of this is where my head is right now. I sort of want to forget that I still have more treatment ahead and mountains to climb, but as Tara (of stage IV colon cancer, same age as me, 2 kids and had same surgery on the same day as me a year earlier and is cancer free now fame) would say, I’m going to go ahead and say it, we got all the cancer out. We (yes me and all of you) are well on our way to the victory lap. So I will do today, be in today and when the 14th roles around, I will hear what needs to be heard and make plans for what needs to come next, with the firm knowledge that I am forging ahead with my own will and intentions and they will manifest into the reality I believe in. A place where the journey is the teacher, I am the student and the cancer is the manifestation of the crisis my body was in, and no longer serves a purpose.

Tara’s very sweet mention of me in her blog:
http://tarasaysfuckcancer.com/2014/09/25/one-year-ago-today-september-25-2014/

Make it a good day,
xoxo
Hilary

I’m Home! And very happy to be here. Jenny drove me home last night and all went smoothly. We made one stop for gas and visited perhaps one of the more vile bathrooms I’ve been in.

Sister-in-law Clia was here to greet us along with Charles. The kids were asleep, but I went in to their bedrooms and kissed them and took them in, we missed each other a lot. They did so well under the circumstances and family and friends swooped in to manage their lives beautifully so I didn’t have a worry. THANK YOU!

Now that I am home I am ready to focus on liver regeneration and overall healing. I think this week will need to be quiet and restful with minimal stimulation. I still have a drain attached to my belly that drains excess fluid which is called a JP bulb or something like that. It’s pretty gross but very necessary. I was hoping to leave it at the hospital but it followed me home. I could have it another 2 weeks or less, depending on when my body is ready. I am managing the pain so far pretty well. I did unfortunately heave the nice smoothie Clia made me this morning. Eating, eliminating, sleeping, and keeping the pain in check are the main goals each day right now.

Shahnaz came this morning to cook nourishing food for me which I am grateful for.

I think this week I will not be up for visitors. It’s an effort to do the mundane right now and even that is tiring. My little liver is working hard to grow and I want to make sure I am giving it all the aide I can by not taxing myself.

I am always surprised by your kindness. Today my planters out front were cleaned refilled and brought back to my front porch by Marie Evans who did this as a surprise for me. Thank you Marie! They are gorgeous and really? Such a lovely thing to do for us. It made me so happy.

Off to my bed for a rest now. I need to disappear for a bit and take some time to heal.

xoxo
Hilary

One the way home from Houston

My beautiful planters