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