Hello!
Somehow I mistakenly re posted Dana’s post from last September regarding FF miles and surgery. Please disregard. I am not getting another surgery and am not requesting miles. Sorry for the confusion

xoxo Hilary

Hi Friends and Family,

I want to create a Memory Book of my dad for our family and especially for my Mom and I need your help! Please send me via email or snail mail the following:

photos in JPEG format or original and I can scan them and send back to you (please try to make the files big enough that they will print nicely)

Stories of my dad

Quotes

Memories

It’s easiest for written things to be sent to me via email however if it’s something that can’t be emailed then send it snail mail.

Please send to my by January 31.

There will be a Memorial Service and gathering for my dad here in Austin the weekend of March 27th  with the actual memorial being on Saturday, March 28. Hilary will post all the details once they are solidified.

Please hit reply to this email for my information (email, address etc) so it is not posted publicly.

Thank you for your help!

Becca

It is a new year. I can’t say I am full of renewal and resolutions. The calendar has flipped, the year has changed but I feel like I’m right in the middle of something that has nothing to do with those markers. Call me cynical, and I probably am to some degree. I’m stuck in the middle of a hail storm of worry. A visceral attack on the human spirit. A place where every negative sound bite I’ve ever read or heard since November 15, 2013 is sticking like black sludge to my heart and drowning out my soul so it can’t rise above the senseless chatter. The loudest sound bite is the one from Dr. Javle saying he thinks I still have cancer, we just can’t see it right now. That one dovetails nicely into all the stories I’ve read of people, good people who have wanted to live just as badly as I do and who did all in their power to be cured but succumbed anyway. That’s where my worry is lodged.

Anxiety is a powerful beast. It’s a robber of energy, time, resources and most of all joy. It is the stealer of life and certainly the enemy of hope. Oh! AND these worries are just thoughts, they are not actually facts. The stories an anxious brain hatches and then retells are completely fictitious. Yet amazingly these reminders are not enough sometimes to quiet the greedy, beastly, grizzly fears that my brain churns out at will.

I know these old patterns of mine are part of this cancer journey. These fears, these anxious tendencies are as familiar to me as the street I grew up on or my own two hands. Their magnetic pull is as strong as the abused going back to the abuser. Familiarity doesn’t make it right.

Today I woke up with anxiety. Plain and simple, dressed down, no frills, anxiety. The strange thing about plain, simple, dressed down, no frills anxiety is that it has no fancy reason attached to it. I couldn’t label my anxiety this morning, I couldn’t tell you what it was about. It was just a feeling that greeted me as soon as I was conscious. It’s primal, it’s fight or flight. It’s the very worst kind because it’s so sneaky and insidious. It’s way bigger than worry.

Here’s the thing. God gave me Phin. Thank you God. He gave me this boy, a charming, sweet, beautiful boy. This child of mine had to go back to school today after a long, lovely break. I went into Phin’s room this morning to wake him for school and as he lay there waking up he fought demons. He fought greedy, beastly, grizzly fears that his brain churned out at will. My sweet boy could even name his fears, he didn’t want to leave his family, he was feeling unsure about an upcoming social studies project, he was feeling like he couldn’t get up and do this day.

I sat on his bed and stroked his back and handed him Kleenex and listened. I watched him in the grips of all that anxiety. Then I spoke. I chose my words carefully because too many words choke out the air in which connection happens. I needed him to connect his true feelings of transitions being difficult to the anxious made-up stories his brain was telling him that it was all too much to manage. I told him his is family would be there waiting for him at home tonight, the social studies project was going to be done bit by bit and not all at once. He could remind himself that he just did a daunting social studies project a few weeks ago and aced it. At this time last year his cousins were here for a week staying directly across the street and they left the day he had to go back to school, he cried and cried and even went in late to school because he thought he couldn’t do it, but he did do it, and the feeling that gripped him so went away just like the feeling he holds right now will go away too. Then I told him to rely on his tools, his breath (deep ones) and his ability to think different thoughts. I asked him to think of something that would make him feel better when the grizzly thoughts occurred. He said he would look forward to coming home and being there. He said he would not count the day in hours. Great, I said. He panicked and wanted to know what he would do if he was overcome at school with sadness and worry. I reminded him that he had handled that previously too. (He started the school year with a month of worry and fear). His teacher, myself and Phin came up with some ideas that would help him when he was overwhelmed, he could excuse himself to go out of the classroom to get a drink or go into the bathroom to deeply breathe or he could pull out a book and read with his head down until the wave of emotion passed. I reminded him these were tools he could still use at any time. My sweet, brave boy got out of bed and righted himself and tackled the fears, the day, the moment.

Ironic isn’t it? I thought to myself. That I am gripped by the same thing as this child of mine and I can look at his suffering and see so plainly a way out of it for him yet struggle to apply the same sage advice to my own situation. This is of course why I have sat down to write. Writing is one of my tools. Like deep breathing for Phin, it is a coping mechanism for me.

I am not through this journey friends. There are layers yet to shed, the cancer of my body is the cancer of my life and as long as I let anxiety prevail, I will struggle with thoughts running a muck and stealing my joy. I have something now that I didn’t have when I was little or even have a year ago. I have tools. I have breath, writing, meditation, and visualization to name a few. These tools are the bridge to freedom. I can see the path before me and I know it’s waiting for me. No, this is not the path to death or some such horse shit. This is the path to joy. It’s mine and I want it. And my kid is gonna get it too.

Happy New Year – go get your joy 🙂

Before signing off I wanted to share an email I got Christmas Eve from a college friend, Heather DiPaolo and her husband Jon. What an amazing love note, thank you Jon!! I adore you both:

Hils,
Each year, Jon is in charge of the outdoor Christmas lights at our house and it was no exception this month-except he changed up the usual decor a bit. This year he surprised me and made this light display in your honor. He has been listening to the Lyle Lovett song “If I had a Boat” that you put on my Australia ‘mix tape’ so many years ago. As the holiday season approached he decided (without telling me) that he wanted to acknowledge your success in some small way here at our home. When he took me out to see the lights he choked up when he told me “they are for Hilary because I know you guys like that Lyle Lovett song.”
He has been reading all the blog updates as I receive them and is always asking how you are doing. We feel so honored to be able to share your journey.
Every time we get a compliment I tell my neighbors that Jon put them up for our friend who has been battling cancer to support her through this fierce fight.
I see smooth sailing ahead my friend because you have your boat this Christmas.
With so much love and admiration,
HAM

xoxo

Hilary

Hello!
I am sorry for the delay in posting since the PET scan last week. I needed some time to wait for some answers, sit with some answers, wait for more answers then process those answers. I know, you would like some answers too, so here goes.

The PET I had done at MDA last week came up clean. This means there was no detectable cancer that the scan could pick up. Dr. Javle called to give me those results and then followed this information up with a, “I’ll see you in 3 months for scans.” “WAIT!! a minute please” says I who needed way more information. “What does this mean?” “Oh,” says Dr. Javle, “it means we can’t see anything right now but in time we could.” So needing to further clarify things for myself I say to him “it sounds to me like you think I still have cancer but we just can’t see it yet.” His reply is that yes, he does think I still have cancer on a microscopic level. Then he says, “But, I didn’t think you would ever have surgery and you did so maybe it won’t come back.” The door left open. He doesn’t know. He then says he’ll see me in 3 months for scans. “WAIT!! I say again, what about more chemo?” He had said in my appointment two weeks ago that no matter what the PET scan said, I would do 4 more months of chemo. “No more chemo” he says, “you have already had lots of chemo (12 rounds) and I don’t think chemo would be beneficial now.” Hmmmmm….This change in plans makes me uneasy, because what has changed since last week?? I am not lobbying for more chemo only trying to understand why two weeks ago he thought it was a given I would do more and now it’s off the table. I have been sitting on that for a few days, mulling over what the results of the CT and the PET really mean for me. That conversation happened this past Friday.

Dr. Curley, my surgeon was out of town while the CT and PET had taken place and I really wanted to hear his opinion on what he thought once he saw the CT scan and heard that the PET was clean. He has after all looked inside my body and has seen more liver scans than most people because that is his specialty. Specifically I wanted to know what he thought of the spot on the liver and what he thought about the lymph nodes that were enlarged on the CT scan (enlarged nodes can mean cancer and Dr. Javle didn’t mention the nodes to me when we met 2 weeks ago but when I got the pathology report and read it I noticed these findings). Last night Allison, Dr. Curley’s PA emailed me the following:

Dr. Curley was able to look at the images today. Good news. He feels that that spot that is in the liver is a bile duct that is slightly dilated and not a tumor. And this would make sense as to why nothing lit up on the pet scan. Also, the mention of some of the lymph nodes he feels is likely what we call reactive, meaning not tumor and can be a little inflamed from the surgery and the residual fluid that is still there.

So that is an explanation I can live with, and Cancer FREE by Christmas is actually a reality I may let myself believe. Oh it’s so scary to believe that, yet it seems if I embrace it, that may help me make it so. I am happy, I am scared to be celebratory because we just don’t know. However, that is the bitch of cancer (thank you Katharine for not mincing words) you just don’t know. There are opinions, scans, statistics, etc but really, nobody knows what will happen, and we all know this expands past cancer. So what is my job now? What does my treatment look like now? To me it means ramp up the yoga, meditation, healthy eating, acupuncture, writing, reading, gratitude, and exercising. Now comes that harder part because it’s murky. It’s called living life and doing so with purpose and meaning. Really??! Yes, really. Integrating what we’ve learned into how we do things is one of the hardest things to do. I’m at integration, taking all my knowledge, all my lessons and living them. This is bloody difficult. This is where faith comes in and surrender. Faith in what can be and surrender to what is. This is an anxious person’s nightmare.

I am filled with hope.

(Taken on Thanksgiving day, hiking Bull Creek Trail)

Make it a good day,
xoxo
Hilary

Good Morning,
A brief post – I am headed to Houston today for the day. I have a PET scan at the oh so convenient time of 6:00pm tonight. I have to be at MDA at 3:30 for blood work then check in at 4:30 for the scan. Prior to that I will meet with PA Allison from Baylor who works with my surgeon Dr. Curley to check out a pain I have been having in my abdomen to see if it’s a hernia or not.

This scan should shed light on if that spot Dr. Javle saw on the CT last week is cancer or not. Let’s hope it’s not however I am prepared for the worst. We won’t have answers for a few days.

So this past month has been pretty much of a shit show if you want my honesty. My year anniversary, my dad’s death, a scan that didn’t go like I thought it would and a recovery that hasn’t gone like I thought it would. Adjusting expectations may be a good place for me to start. With the holidays here and all that comes with it, I will give a piece of advice to you (which means I am talking to myself here) – if you’ve found yourself off track, overwhelmed, not meeting your own expectations, take a look at what you are doing day to day and ask yourself if those are all things that need to get done. Then think about one thing a day that you can do for yourself that can make you feel more grounded. A walk, half an hour reading a good book, a yoga class, cooking something you enjoy cooking, an activity with you honey or your kids that would be fun for YOU, meditation, a long phone call to a friend, a thank you note to someone, an act of kindness, write down or say in your head what you are grateful for, anything! Don’t wait until the New Year to get back on the train. Do it now so you can enjoy these holiday weeks. That’s what I’m going to try to do. I seem to be in a bit of a rip tide and I think I’ve been fighting the current way too hard. I think if I surrender to what is, I may just find I can swim to shore.

Make it a good day,
xoxo
Hilary

Hi Everyone,

A quick update from today’s visit with Dr. Javle at MDA in Houston. My CT scan yesterday looked good in that the liver is regenerated. The fluid in my belly has all gone down which is good. On the less positive front, there was something that showed up on the scan that has yet to be identified. It could be cancer, could be something else. Could be cancer that was missed when I had surgery, could be a new cancerous lesion or could be scar tissue or something else. The plan is for me to go back to Houston next week to get a PET scan and see if it lights up on that type of scan, then have Dr. Javle and Dr. Curley, my surgeon weigh in it, compare it to older scans and what Dr. Curley saw when I was in the OR. If we think it is cancer then we may ablate it, meaning a needle injection of radiation to freeze it, or consider another surgery or see what other options we have. If it’s not cancer I will be relieved. It’s troubling to be sure and much as I want to believe it is not cancer, I am having a hard time not going down the what if path.

Regardless of what it turns out to be, Dr. Javle wants me to do 4 more months of chemo, the same concoction I did before. This I believe is pretty standard practice. This will start soon pending the outcome of the above issue.

So it’s not been a stellar day. Dr. Javle continues to say I am doing well. I think his definition and mine may be different. He thinks I’ve responded well and I’m still alive and kicking so that’s really good. I want to be cancer free by Christmas and stay that way. Really good just isn’t good enough in my book. I am disheartened and feeling pretty sucked dry at the moment. It’s so damn tenuous and it sucks.

Thank you to Kendall, Meredith and Jennifer as well as Becca and Mom for taking care of Phin and Charlotte while we were gone over night. Charlotte came down with something today and has been throwing up all day and night. I didn’t feel great today and last night so hopefully I’m not getting it too.

I’m exhausted. I feel a bit like the testing of my strength is getting a little out of hand. However I know I have much to be grateful for and so I will not whine and instead count my blessings, for which there are many. I hope you count yours too. Thanksgiving is usually my favorite holiday – no gifts, just being with family or friends, enjoying a meal and focusing on what’s important in our lives. I have such great memories of Thanksgiving with my family, cousins, aunts, uncles, grandparents and later including spouses or significant others and the occasional guest at our house. My Grandma Bruce started the tradition in her tiny apartment in Swarthmore, PA with her three children and their families. Then it moved to our house. We did plays and shows many of which we have on video tape. It was serious fun cousin time and the adults got to chat uninterrupted.

Last Thanksgiving was the worst of my life. It was 2 weeks post diagnosis and I was just not making it. We were with close friends and Becca and Steven at the coast which should have been lovely but I was just undone and in shock and truly struggling to get up off the floor. I am not in that same state this year yet I don’t feel the joy that I did in years past.

Tomorrow is another day. I’m going to go to bed soon and will very much try to be in the present tomorrow and put my woes aside. Dad and Aunt Susan (my dad’s sister) we will miss you especially this time of year because you were always at our Thanksgiving table growing up and we love you so.

I have too many friends that lost a parent this year, please say a prayer for the families of:

Sam Nichols
Margie Halford
John Krupes
John O’Donnell
Doc Hopkins
Dick Vanis
Bill Bruce

xoxo
Hilary

Hi.
It’s been a little while. I am sorry for the radio silence. I have had so much and so little going on if you know what I mean.

On November 16 at 1:58 am my dad William Henry Bruce took his very last breath. My Mom was with him at their home. This was not a shock as he had advanced Alzheimer’s and we knew he was close in the past few weeks. That being said, death is always a shock isn’t it? Not because in cases like ours, you don’t know it’s coming, because we did, but because it’s like poof, they are gone and you can’t find them. You have to wrap your mind around the fact that you will never ever see them again in the flesh. That is insanely hard to grasp.

My dad has been gone in many ways for a while now with Alzheimer’s robbing him of his ability to think rationally, or connect to a conversation years ago. In more recent years it robbed him of his physicality, this being one of the hardest things for me to bear witness to. Those who knew my dad remember his spry, fit gait and his absolute love of sports. When he started to stoop, shuffle and lose his balance I grieved. That loss was the most profound to me for his physical energy was so much of what made my dad himself.

We never told him about my illness but I suspect he knew anyway. I wanted very much for him not to worry about me, or Becca or my Mom. A week or so before he passed away he asked his caretaker Rudolfo “Can anyone tell my if Hilary is ok?” This is remarkable in that he hadn’t used my name in well over a year or more and he wasn’t really speaking coherently or much in his final days. Rudolfo assured him I was ok and the next day I came to see him and held his hands and let him know I was indeed ok. I need very much to believe he understood for it would break my heart to think he was helpless and worried.

My father would not discuss death, for he believed he would live forever. He hung on good and hard and I can tell he didn’t want to go. In the 10 years he lived with his diagnosis he was jolly, and joyful and truly sweet. We went though phases when he was challenging but not in the way many Alzheimer’s patients sometimes become. He wanted to sing everywhere and to anyone and he wanted to dance. And oh yes, there was the cursing phase that was so out of character for him because he generally said “oh fiddle!” when he was exasperated. That is until he went through the cursing phase where his favorite line was “I’m full of shit”. In order to appreciate this fully here is one way it played out. Becca and I would take my dad for a walk around Town Lake on Wednesday mornings about 4 years ago and to each and every person that passed (and there were MANY) he would say to them, “Hi! I’m full of shit!!” and continue on his merry way. I would laugh and Becca would become cross midway through the walk and try to explain to dad that it was inappropriate behavior. This is sort of like telling a 2 year old it’s not right to jam your finger up your nose and eat it, they just do it because it feels right!

I’ve thought a lot about how my dad waded through the shitty hand that was dealt to him by getting Alzheimer’s. What can I learn from the way he lived with and through it? I am always brought back to the word simplicity. My dad was an extremely complicated man, distant in ways, un-opinionated down to basic questions like what’s your favorite color or ice cream flavor? “I like them all” he would reply. It made getting to know him murky yet if you believe in actions speaking louder than words then my dad was screaming his adoration for us in deliberate ways. My dad missed a lot of evening meals but he was at almost every single one of my lacrosse or field hockey games, rearranging his schedule so he could come back to Chestnut Hill from downtown Philadelphia for that hour then go back down to the city again. He would help a friend of mine move all their furniture into an apartment and think it was fun even though it would take an entire Saturday with multiple trips in hot muggy weather. It was fun because he liked to be helpful. He would get into the action at all our birthday parties not staying on the sideline watching the fun. Most memorably he went barreling down Elk Ski Mountain in the snow on a saucer after me and 5 of my friends hiked the mountain as part of my 7th grade birthday party weekend at our Farm. He accidentally took Heather Doran out as he flew down the hill laughing all the way. He listened when we were sad and didn’t try to fix it but hugged you tight and just sat with you where you were. He didn’t try to change us, ever. He greeted each day with no backwards glance at what had passed the day before. Each day was A. New. Day. In the face of Alzheimer’s that was his greatest gift to himself and to all of us. He didn’t lament what was not. He took pleasure in simple things, a great song, a chocolate chip cookie, a well timed wink and toss of a ball.

My dad was a great man, because he was my dad. He is gone and I will never look into those hazel eyes, the same color as mine and see his warmth. I will never hold his hand and feel him squeeze it, a silent love note. I don’t know how that could ever be ok except it will be because I was loved.

I have put off going to Houston to meet with Dr. Javle and to have scans because I just don’t want to do it. I am scared. Scared that there will be something new, scared that I will hear something I can’t handle, scared of the unknown. Tomorrow I will have scans at 5:30pm and meet with Dr. Javle at 9:00 am on Tuesday to go over the scans and map out my next steps. I am not feeling bold. I am floundering and feel untethered. I guess that’s ok because it’s been quite a year. My absorption rate is low and there is lots to absorb. I will get to the top of that peak, I’m just catching my breath. I am so close I can almost see the summit. Summit Street – that was the name of my street growing up, our house was on the highest point in Philadelphia. A silly mention maybe but my dad loved that place, we all did because it was where life happened and as we all know it’s not about the destination, but about the journey.

PS – THANK YOU for my cheer and sharing your journey love with me, I was truly moved.

Good Afternoon –

It’s hard to believe it has almost been a year since my sister was diagnosed with cancer. It all seems sort of surreal and then also very real at the same time. I know that November 15th is a date that is somewhat looming for Hills. She is still recovering from surgery, not feeling 100%, and I know wishes she was feeling physically better.  I wish there was something I could do to make it better for her and I know a lot of you feel the same. We haven’t had a cheer since her liver surgery when Carolyn Grant spearheaded “cut it out” which as fabulous, so thank you Carolyn for that. That was 6 weeks ago today. So I think Hills could use a little cheer and a reason to honor the date of Nov. 15th.

The next cheer theme is “Journey” (thank you Charles and Clia for your idea!) In Charles’ words, “Every million mile got to take a first step” (Every million miles ya haffe tek a first step, from the band Spearhead) http://www.lyrics.net/lyric/820076

Please send your stories or quotes about everyday folk who make their way through extraordinary times, your own personal journeys, your thoughts about journey, your favorite Journey song :)! Think perseverance and what that means. It’s been a long year, and everyone is saying now may be the hardest part. So Hilary needs your support and love on her journey!

As always, thanks so much for your support – xo becca

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