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

Good news, I am out of the ICU! I moved around 10 last night. This means less cords trailing from y IV pole, less poking in the middle of the night and more independence. I have also moved on to solid foods and can walk to floor, go the bathroom and generally move about the cabin at my leisure.

Today has been a much better day. I slept a lot in the morning but was awake most of the rest of the day. I had such a good time decorating my walls with part two of cheer. “cut outs”. What a fabulous idea Carolyn and thank you to all of you that not only cut out something from your life for my hospital stay duration but also for the adorable cut outs that fill my wall. It makes it cheerful and colorful and downright joyful to be in here. Add the gorgeous flowers and cards I have received and once again, I find myself overcome with gratitude. Tears streaming down my cheeks as I hung these things. Wondering why I am so fortunate.

Some of you have heard about Tara, a mother of two children like me who was diagnosed with stage IV Colon cancer in November of 2012. She is a friend of a friend and Clia connected with her right after I was diagnosed. Tara told Clia about cheer as well as the power of hugs and I have been following her progress and leaning on her for support every since. Tara’s cancer like mine had spread to her liver and she had the same surgery I just had on the same exact date, in 2013. Tara is cancer free today. Tara lives in Santa Barbara and is very into Paddling. She wrote me on the day after my surgery to tell me that she went out for a paddle and the winds were strong and it was nearly impossible to stand up. Knowing I was in ICU and needing to push my body hard, she made herself overcome the tough waters and stand so she could send healing energy to me. It’s these acts of selflessness and grit that truly inspire me. Thank you Tara for helping me find my way on this journey and for being available to support and help me. There are numerous people that have done this for me in the cancer world and they know who they are. It has been integral to my being able to forge ahead.

It looks like I will be in the hospital until Wednesday at least. My friend Jenny just flew in from Vermont to be with me and we are going to sit down to a nice dinner a la St. Luke’s hospital and Chipotle. Jenny will do some food shopping for me tomorrow so I can get the protein I need without going haywire off my diet.

Aside from the physical fatigue, I feel a bit unsure about what lies ahead. I have conflicting feelings about my cancer. What it’s purpose has been, what to do with the lessons I’ve learned, how to live with the uncertainty this disease brings. I think we got it all out. There is fear in saying that. I know part of this journey for me is not to live in fear. I’ll have to think on this a lot more to find my place of peace and surrender. I am grateful for the opportunity. Today though, I think I just want to feel normal. I am no more capable or strong or motivated than any of you. When we all combine forces, that is when something extraordinary happens.

THAT is worth pondering.

Nite, Nite.
xoxo
Hilary

Here’s the wall – hey Char – it’s like a Wonder Wall.

Goodmorning!
(Not sure if that’s one word or two, so bear with me, this post is sure to be confusing at best!)
I am still in the ICU. From what I understand, my blood isn’t clotting yet the way it’s supposed to and I sm still having some blood loss through the incision where the liver is.
This means lots of monitoring and some infusions of blood and blood clotting agents (don’t make me retrieve the words for those).
I have been a zombie, and have a new understanding for people who have a hard time waking up in the morning. (Like my husband). Lathargic doesn’t begin to define how tired I feel. I can be talking then fall asleep mid-sentence. I guess when 2/3 of your liver is removed and you lose a lot of blood, it’s not surprising.
I would like a vat of water, I’m not allowed to drink. I did drink some yesterday because I didn’t know the rules, and when I asked the nurse for wasted, she kept bringing it. I haven’t eaten anything since Wednesday at 1:00. Not hungry but truly thirsty.
I have been up out of bed to use the loo – there’s one next to my bed. My catheter was taken out yesterday so I was up once an hour, literally to go. This involves unhooking various wires, putting my disco bag (bag containing pain meds around my neck) and a ballerina twirl to the potty so I don’t get caught up in the wires. It’s a vision.
Today I want to walk, I am strong and ready do so but I haven’t gotten permission yet.
Well, I’m ready to sleep again. Thank you to the Anderson’s and the Grants for giving our kids a fun weekend, and to the Dobberfuhl’s for surrogate parenting.
Thank you all for checking in, I thought I’d be more with it at this point! Patience, I know!!
Xoxo
Hilary

Upright and in the chair! That device was not a present from Bong, it’s to make her take deep breaths and expand her lungs once every hour.

Hi all – Charles again

I’m with Hilary in the ICU where we spent last night. There was a little bit of excitement last night post surgery; Hilary’s blood pressure was low which is why the Docs ended up having her transferred to intensive care instead of a regular room. She was feeling pretty lousy, which wasn’t helped by the presence of a very loud, large, angry lady who was also recovering in the post anesthesia recovery unit and making lots of phone calls to complain and yell at her husband about various things. Once in the ICU, Hilary was looking pretty yellow and her hemoglobin dropped. They gave her a couple units of blood and she started to look and feel noticeably better. This morning her pain level is ramping up as is expected, but because her blood pressure and heart rate are now looking good, she can press that pain meds button every 10 mins if needed, so that should be fine. She looks MUCH better this morning!

Dr. Davis and Dr. Curley just came by for rounds. Dr. Curley reiterated that the procedure went “fantastic” and that he did, in fact, say out loud the positive affirmations Hilary asked for before starting. Apparently, she was loopy before they even reached the OR, and doesn’t remember arriving there. We’re big fans of Dr. Curley, he’s got a great manner and fits perfectly with Hilary.

Hilary’s alert and mostly back to herself and they’re letting her have ice chips and sips of water, a huge help. She’s right now getting some more blood to get her platelet count up. Dr. Davis will be back around later in the day to let us know whether she can transfer to a regular room today. I’m pretty confident that she will be able to.

That’s it for now – here’s a pic just taken of the surgery docs…Dr. Curley has the beard, Dr. Davis is the younger one.

Hi all –

Update is that I just talked with Dr. Curley and Hilary’s all done. He said it went great, she’s doing fine, and there was no bleeding and no transfusion needed! He had originally planned to take out the left lobe of her liver and a slice of the right, but when they could see her liver, it was apparent that the 4 tumors were all in the right lobe. Her liver was bit ‘torqued’ (twisted…but this is not a bad thing) so what they had seen on the recent scans didn’t accurately represent where the masses were. So, the procedure was a little different than planned, but it went well. He looked all around the region and took out all detectable cancer. Since the right lobe is bigger, more of her liver is gone (about 2/3) than was expected. But, because the liver regenerates, it will be back in action in no time (6 weeks or so). Amazing medical fact: with a healthy liver, you can remove 80% of it with no problem. He also took out her gall bladder and all the lymph nodes in the area as was planned. Big sigh of relief! I’ll get to see her in about an hour.

She’ll be low energy and tired for a while as the liver grows back, but after about 6 weeks, she should be pretty much fully back in it. We now have loads of tissue to analyze so we will be getting it to various labs which will inform the next steps.

Thank you for all the well wishes, prayers, and checking in today!

Hi all – Charles again,

I want to express, if I possibly can, to all you friends and family how deeply grateful I am for all you have done for us. I’m not sure I have the vocabulary, or if the vocabulary exists, but here goes. I can mark this intense journey for us by a few images that capture the progression well. A few weeks after Hilary was diagnosed in November of last year, there were times I saw her lying in a despondent heap on the floor, with no will to get up, frighteningly thin, and enveloped by what amounted to her biggest fear coming true. This memory is now nearly obliterated by what is our current reality. Hilary did handstands while speaking to a group at Livestrong. She did a handstand this morning in the hotel. She used to run to and from chemo (this fact is what makes her stand out in Dr. Curley, the surgeon’s, mind). She now views her cancer not as a terrifying monster, but as a teacher that will move on once we have learned what we’re supposed to learn. The transformation has been inspiring for me and for many people and I am so, so proud of her. She said this morning that she doesn’t think she has cancer any more and that this surgery is just due diligence. I believe it.

None of this transformation nor the steady shrinking of cancer that has happened since last November would have happened without all of you. You have checked in through all the possible channels to remind us how much we are cared for. You have taken great care of our kids and made them feel safe when we needed it. You have interrupted your lives to fly in and help. You have supplied dinners and treats. You have given countless gifts and you have paid for the things that are pillars for Hilary’s health. You have prayed for us and sent your vibes of goodness at every step of the way. The list goes on and I am overwhelmed thinking about all the things you have done for us. This cancer is on the way out. I am grateful for Gemzar and Cisplatin (her chemo) and how well Hilary responded, but I truly believe that what has been more important in reversing the direction of cancer has been the fabric of love and support that you have created and wrapped around us. That is what she has truly responded to.

For that, I thank you with all my heart.

Love,
Charles

Hi all – this is Charles – I’ll be posting updates today as I get news. I’m in the waiting room at St. Luke’s now. The crew wheeled Hilary off to the operating room about 30 mins ago. She’s nervous (as am I), but in good spirits and genuinely glad that we are at this step, that surgery is really happening, and that cancer will be cut out today. Her docs, both the surgeon and anesthesiologist, are good peeps and inspire confidence. On top of that there have been several good omens thus far:
*One of the nurses who was prepping Hilary is named “Bong”. No further elaboration needed.
*The anesthesiologist lived in DC for a while, making him my DC homeboy.
*Probably most important, her surgery crew had a practice swing this morning. Apparently they did the exact same procedure on a 44 year old woman. No first tee jitters today!

Much more to come…thank you all for your love and support!