When you are in dark times, if you are lucky you have many around you that will drag you towards the light. I am one of the lucky ones. There are way too many people to mention by name here but I did want to acknowledge a few people that really helped this week.

Katharine Lord, my PA from Dr Fain’s office (my local oncologist) was the first person I contacted when my family told me I looked yellow. I sent her a photo and she immediately replied I needed to be checked out. She has been a constant supporter and has fielded many calls, texts, and office visits from me which go well beyond the scope of her job. Katharine knows me best as a practitioner and I rely on her considerably. I am especially lucky that we have become friends outside of cancer. She champions my treatment and recovery but most of all, she champions my soul, and holds me in a space that few can.

Michelle Schreiber from Sage Acupuncture. Michelle and I have been working together from the start of my diagnosis. She has seen every stage of this journey and witnessed all the highs and the lows with me. When I had a headache in the hospital and could find no relief Michelle came to see me, twice to give me acupressure and help ease my burden. Her first visit was in the evening after a full day and she dropped everything to come and help. When she first walked through the door and I saw her I just felt relief. Knowing she was there made me feel better already. Michelle has been another supporter of mine and we too have grown to be friends. She is a wonderful healer and her support has been crucial to my healing.

Ashley Blake came into our lives 6 years ago when we moved to Austin via friend and neighbor Kathryn Anderson in the form of a babysitter. She quickly became not only our kids favorite sitter but a part of our family. Ashley is light and love in and goodness and kick ass awesomeness in a 5′ 2″ frame. She is wise and driven and loyal and can do anything she sets her mind to. As co-owner of the gluten-free company Bona Dea she has plenty on her plate but she whipped up a meal for us tonight that was brimming with health, taste and love. She is a fabulous cook. Carrot Ginger soup topped with Dukkah and Kitcharee with mung beans and rice, bean and cheese quesadillas for the kiddos and grape jelly made with wild mustang grapes she and her husband Zak picked in Travis Heights and gluten free oatmeal chocolate chip cookies, vegan brownies and Teff Bread. Really? Thank you Ashley for shining your light on us. We adore you.
http://bonadeaglutenfree.com/

Paige Reynolds – the project? I can’t go into detail or else it will blow a surprise I have for a friend but dear childhood friend Paige and I had a conversation in Vermont about a little something I wanted to do for someone else. It involved sewing and a little vision I had about wanting to help a family. We talked about my idea once and never again and on the one day I was home from the hospital in Houston a box arrived with the project we had discussed. Perfectly executed and beautifully sewn just like I had envisioned. I so admire my friend’s talents and Paige has many but what makes my breath catch is the love and kindness behind the act. That to me is some sort of grace. Thank you Paige. They are perfect.

One more mention. Many of you know I have had the benefit of a fantastic therapist since diagnosis. Elizabeth helped my move mountains and listened when I ran to hide behind them too. She and her family moved away from Austin this summer which was a real loss for me. Today she was at the Academy of Sciences with her kids, a place my kids and I spent countless hours in when we lived in SF. We could walk there from our flat and the way we walked was always through the Rose Garden in Golden Gate Park. With the Redwood trees along one side and a little woodsy area Phin, Char and I spent hours floating around the roses, drinking in that cool San Francisco air, collecting bugs and sticks and rose petals. I told her she was so close to one of my favorite spots and less than an hour later she sent me this. No words Elizabeth. Thank you.

And here it is in 2008 on one of our many trips:

There are many meals I missed but my family got to enjoy and I know equal love and effort went into those deliveries.

All of this kindness reminds me about showing up. It’s so easy to just show up. It doesn’t matter if you’re not a great cook or a seamstress or come bearing extravagant gifts. That’s not the point. It’s the human connection. We have wonderful neighbors on both sides and Barbara on one side watered our outside plants while I was in the hospital (thank you Barbara!) and Julie on the other has been lovingly referring to me as her sunflower (my yellow glow from high bilirubin). There have been thousands of ways people have showed up in my life since this all started and it is all those small gestures that keep my spirit strong.

I still hug all the medical people I come into contact with (there were a few missed ones when I was too ill) but this morning the doctor that rounded on me in the hospital was a man I had never met. He pulled my blood work up from earlier that morning on the computer and then motioned for me to stand beside him and look at the results. He then went on to explain in details the results. This is an experience I have never had in the hospital. As he was getting ready to leave my room I gave him a hug. He hugged me back and walked towards the door, then he turned towards me before walking out and said “A hug, it’s been so long since I’ve gotten a hug, thank you.”

Nite nite,
Hug your peeps, count your blessings and sleep tight.
xoxo
Hilary

Greeting from St. David’s Main. As Becca posted yesterday, I am feeling much better, finally. I woke up at 8:00, showered, dressed and went down to the cafeteria for breakfast. Back in my room I have gotten a report that my bilirubin continues to fall which is good. It’s 5.9 today down from a high of about 8.7.

I have a great view of the frost building and UT Tower here from my hospital room and the beautiful white and yellow flower arrangement my mom brought to me continues to be a bright spot in an otherwise bleak environment.

It’s been 12 days since surgery and I have been in the hospital all those days except last Friday night. Yesterday was the first day I was free from the constant nausea and able to think past my own desperate situation. This experience has been humbling. I have had it easy in the world of cancer, enjoying minimal side effects, good scans, and an overall great quality of life. I am seeing a different side of it and while none of this last experience has been expected or wanted I feel it has been necessary for me to gain knowledge I wouldn’t have otherwise known.

I was sitting here looking out the window and the song “Many Rivers to Cross” by Jimmy Cliff came into my head. I pulled it up on my phone, put my headphones on and listened to it. (Ah technology!) As I listened to it tears rolled down my cheeks. I feel like I have many rivers to cross. Many hurdles to get through. “wandering I am lost”, “it’s only my will that keeps me alive” very much describes how I am feeling. Yet this is not so much a melancholy feeling but more a true breaking down of the spirit with faith that I will come through stronger. I have gone to dark dark places these past two weeks. I have so much healing to do. Like it or not, my life perspective has been altered once again and I have a lot of sorting out to do.

I don’t want to keep going through this yet the rawness of life, the depth of character, the strength of the human spirit are all things you think about when being tested. You realize we float through our days with so little thought and gratitude. We spend energy and money on distractions and forget to pay attention to ourselves and our people. Without health, you are without life. I thought I learned this a year and a half ago, but I’m still trying to get it. All I wanted when I was feeling so bad was open spaces with trees and grass and birds. No noise. No technology. Nothing draining me. I think we all need that.

I have a lot more questions than answers. I am grateful to be feeling a lot better. I have a lot of mending to do but I look forward to finding some peace as I heal.

I am headed home today at last! I am so grateful to Dr. Declan Fleming for picking up the phone when I called him last Saturday night from the ER in Westlake. He has put me in all the right hands here in Austin and given me his world class care as well. Also a big thank you to my brother-in-law Dr. Steven Dobberful for helping me find specialists and interpreting blood work and making sure I was getting everything I needed. I love you Pepe. To all the friends that have made meals, taken Phin and Char, and helped with rides, Thank You, you know who you are.

To my sis who came everyday to hang out, arranged childcare so she could just be with me, thank you. You are other-worldly. To my Mom who has logged in a lot of visiting hours as well, and has had to watch her daughter squirm, thank you for all your steady strength. To my husband who I worried may either have a heart attack or a break down between me, work and the kids, you are always the love of my life. When you look at me there is always love and acceptance weather I’m wrapped in yellow skin or dry heaving over a bowl (just to recount some scenes from the week), you always see me.

All the texts and notes and calls and especially prayers at your churches and with groups have all been received and appreciated.

I’m ready to go home!
Xoxo
Hilary

Hi it’s Becca again with a quick update on Hilary.

She was feeling much better this morning which was HUGE! Finally some relief from the nausea and headache. This was really the first time I have seen her seem more like herself since her surgery on Monday, Aug 17th. Her bilirubin numbers are still elevated but coming down which is good. I asked one of the drs to explain to me what exactly happened and was told she presumptively had a complication with her surgery. Normally, bile flows from the liver through the bile duct into the small intestine. Unfortunately, she had a small leak of bile into the abdominal cavity and collected under the diaphragm and part of the liver (“sub diaphragmatic and peri hepatic fluid collection in the intra abdomen”). The cultures and gram stain were all negative, so no infection. So there was no abscess present but rather a biloma “a pocket of bile fluid”. Since it was a slow leak, it took a while for it to present.

Another victory today was the removal of her drain. This has been not only a pain to have, but painful and I know that Hilary was very happy to have it removed. They are saying she may be able to go home tomorrow, which we are all hoping for.

I spent the 1st part of the day hanging out at the hospital, we strolled down to the cafeteria to get some lunch, Hills in her PJs and IV tubes tied to her hands. I don’t think many patients do this so there were a few looks! There is a beautifully landscaped and very peaceful courtyard off the cafeteria and we sat out at a table and enjoyed the Texas sunshine. It was wonderful to sit and chat and pretend we were in a nice park vs. St. David’s hospital. I have missed getting to do this with my sis!

xo becca

Just a quick update – Hilary got out of surgery early this afternoon. Everything went well with the ERCP. The “leak” was not significant and a stent was placed. They will remove the stent in about 4 weeks. We hope that she will be able to leave the hospital and head home either Thursday or Friday.  Her body still needs to heal from the liver surgery last week and her bilirubin levels still need to come down so it may take a bit for her to feel “back to normal”.

I spoke with her tonight and unfortunately her headache is still in full force. When she woke up this morning she it had come back and it was pretty bad as she went into surgery. When you are not feeling physically well it is hard to feel good at all. I sincerely hope she is able to get some sleep tonight and wakes up headache free. I know from experience headaches are really the worst!

Please send all your positive energy her way, I know she is feeling really beat up and just wants a break.

xo becca

Hello all, Becca, Hilary’s sister with an update:
Hilary is still in the hospital at St David’s central in Austin and we had all hoped that she would be headed home at this point, but alas we are headed for more surgery tomorrow.

Her bilirubin levels are not going down and in fact rose a little yesterday. She has a lovely yellow twinkle in her eye and jaundice tinge, so we need to change things up a bit to get her back to normal. The Drs had hoped that putting in the drain would bring the bilirubin levels down and do the trick but this does not seem to be the case. So the next course of action is to do an ERCP with Dr. Harish Gagneja, who Steven says is “very smart, a thinking GI MD, and very capable”. This will happen at noon tomorrow, Wed. August 26th.

from the Web:
ERCP (Endoscopic Retrograde Cholangio-Pancreatography) is a procedure that enables your physician to examine the pancreatic and bile ducts. A bendable, lighted tube (endoscope) about the thickness of your index finger is placed through your mouth and into your stomach and first part of the small intestine (duodenum). In the duodenum a small opening is identified (ampulla) and a small plastic tube (cannula) is passed through the endoscope and into this opening. Dye (contrast material) is injected and X-rays are taken to study the ducts of the pancreas and liver. ERCP is most commonly performed to diagnose conditions of the pancreas or bile ducts, and is also used to treat those conditions. It is used to evaluate symptoms suggestive of disease in these organs, or to further clarify abnormal results from blood tests or imaging tests such as ultrasound or CT scan. The most common reasons to do ERCP include abdominal pain, weight loss, jaundice (yellowing of the skin), or an ultrasound or CT scan that shows stones or a mass in these organs.

Dr. Declan Fleming, who is a surgeon and helped her early on, and she really trusts, was the one who recommended the ERCP. He was at the hospital when I was there today and extremely nice and caring person. He also gave her the option of another procedure, I did not hear all of this conversation but he was leaning towards this one and said it she were his wife this would be what her would want her to do. He even picked up his phone and spoke directly to Dr. Gagneja and told him to come visit Hilary today and if Hilary was comfortable to go ahead and set up the surgery. Amazing what Drs can actually make happen when they talk to each other directly! When they go in to do the ERCP then will also put in a temporary stent to help keep the bile duct open. This will stay in for a few weeks and then is removed. Dr. Fleming has also been in touch with Dr. Curley so everyone is in the loop.

I just got off the phone with my dear sis (9:30pm tonight) and she sounded great! She is a wonderful advocate for herself when she really needs something and called her acupuncturist Michelle, from Sage Acupunture, to come to the hospital to do help relieve her headache and get her in gear for surgery tomorrow. Thank you Michelle for working your magic. When I last saw Hills at 1:30pm today her headache was really setting in and she just texted me a picture, post massage and shower, and seriously looked like she was at the spa! It is truly amazing what body work can do to transform a person both physically and mentally. This was  exactly what Hilary needed.

She met with Dr. Gagneja earlier today and said she feels really good about him, really liked his personality and he knows and has worked with Dr. Curley. So she is in great hands for surgery tomorrow. My sister is truly blessed to have some many wonderful friends and family members who love her and give so freely. Thank you to everyone who has helped, offered to help, and continues to help – I’m too tired to name you all but you know who you are!

Hopefully, Hilary will be posting again soon, and I hope she tells of her experience doing energy work with a woman from California (via the phone last night) – Thank you Catherine for giving Hilary this gift.

That’s all I have from now. Nite, nite,

xo – becca

Greetings from St. David’s Hospital Main in Austin. Lovely facility, nice people but I am truly being pushed to the edge. I’m not sure what exactly is going on internally but something is not right. I started to look jaundiced yesterday which lead to roughly 6 hours at Westlake ER where a CT scan was done. Admitted to St. David’s last night and tucked into another hospital bed at 1:00am. I can’t tell you what has gone wrong. I can tell you I feel awful. Steady nausea, hard to walk, a very general but overwhelming unwell feeling. No anti nausea meds help, sleep is not easy, being awake is challenging. I am beyond tired, drained or annoyed. I am desperate to feel better.
This morning I will have a drain placed in my abdomen to drain excess fluid from surgery. I will also likely have to have another surgery to correct whatever is causing my bilirubin to spike and making me feel so terrible.
I hope answers and relief will come today. I have been away from the kids for almost a week and they start school this week. I am betting I will be in the hospital overnight again tonight. I will be calling on local friends to help me tomorrow with my kids and snow cone day.
I want to sob and protest and wilt to the floor. I would give anything to feel well. Please thank your body today for giving you health. Illness paints a gray film on every inch of your life even when your trying your hardest to find the light.

Hi Everyone,
I wanted to post a very quick update. I am home as of yesterday afternoon and happy to be here. Surgery was brutal and I think I did better the first time around. The unrelenting nausea I had for the first 72 hours was a result of a pain blocker my anesthesiologists were very enthusiastic about giving me. It all sounded great until we realized I’m in that 2% that gets severe nausea for 72 hours from that particular anesthesia. Really? So the hospital was rough, lots of dry heaving and general ick. I am still struggling with some nausea and it’s frustrating as well as pain to boot. Eating is generally difficult but must be done so that at the least I can take the pain pills and the antibiotic without heaving that up. Are you getting a good picture? I’m not going to lie, I’m pretty miserable and my outlook as a result is grim. I am a bit yellow in the eyes, this makes me wonder if my liver is doing alright. This is the 2nd time in less than a year my liver has undergone major surgery and I think my body is much more fatigued this time around.

I apologize to those that have tried to reach my by phone or text or email. Looking at my phone makes me queasy, not kidding so I am going to have to be MIA until that resolves. Thank you for the flowers and notes and prayers and continued support. My mother-in-law left today and she was amazing as primary caretaker of Phin and Char. Thank you to the Mom’s and babysitters that helped out this week too and showed the kids a fun time and to those that dropped off food. It was all greatly appreciated.

This is a dark kind of post but it reflects the dark kind of place I’m in. I’m just being honest. This is the pits. Sickness sucks. I know things will brighten up, I’m just not there yet.

xoxo Hilary

Hi – this is Charles again with quick update. Hilary’s feeling pretty lousy still. She’s been nauseous most of the time since Monday. Surgery pain isn’t too bad, but she just feels sick. The docs aren’t alarmed as this is a pretty common after-effect of anesthesia and surgery. I’m staying another night in Houston with her. My wonderful mom is at our house with Phin and Char – thank you Mom! Hopefully, tomorrow will be the end of nausea and we can get her out of here and home on Friday.

Hi all – this is Charles. We arrived at St. Luke’s at 7:30 this morning. Hilary was in good spirits (although tired). Fun pre-op picture with party hat is attached. She went into the OR at about 10:30am. I just talked with Dr. Curley a minute ago and the summary is:

All went well with the procedure and I’ll see her in recovery in about an hour. Dr. Curley took out the area of her liver that had looked suspicious on the scans. He also ablated (microwave radiation) one other small area that may have just been scar tissue, but it made sense to knock it out while he was in there. Dr. Curley again did ultrasound all around the area of Hilary’s liver and there were no other visible signs of cancer. All in, he took about 5% of her liver out this time, which should be much easier to recover from than the 60+% last time.

The pathologist looked at the tissue Dr. Curley removed and it was, as suspected, cholangiocarcinoma. So, it’s a good thing that we did the surgery and got it out. All detectable cancer has been removed, which is also a good thing! The next steps (after rest and recovery) will be to get results from the additional testing that we’ll have done on the removed tissue and to check in with Dr. Javle and again with Dr. Curley on what, if anything, needs to be done.

Thank you all again (and again and again) for your prayers, thoughts and well wishes. It really means more than you can know to our family to have your support.

Charles

I forgot to add that surgery is supposed to start at 9:30 central time! Please send prayers, light and love, so much has already come my way already, thank you.

xoxo

This was on our way to Houston tonight.