Hi Everyone,

It’s been a while, probably because I have been busy feeling somewhat normal while I have the 2 week break from chemo. This is the first time that I have not wound up in the hospital for some unforeseen issue during this 2 week hiatus so it seemed extra long and devoid of stupid cancer drama. YES!

For those of you keeping track I have completed two full rounds of chemo and for those of you interested, this is how my schedule rolls: Day 1 which is always a Friday – I get treated to a tasty helping of Gemzar and Cisplatin, Cisplatin being a nice heavy metal type drug. This takes me about 4 hours not including the labs that are drawn and meeting with Dr Fain or his PA Katherine Lord. Today I walked in at 10:15 and left at 3:45.Next day in the cycle is Day 8, also a Friday and I only get Gemzar on this day so infusion time is closer to 2 hours – SNAP! So fast.  The cycle technically continues until day 21 but I have no more infusions during that time. Then on day 22 a new cycle starts and becomes day 1 again. (My oncologist office opened 2 hours late today due to our almost impossible to see snow dusting and ice in a few places storm! I feel lucky that our office was open as all schools were closed, government offices closed and most every other kind of business was closed)

Today I started day 1 of my third cycle. I will complete this cycle then head to MD Anderson to meet with Dr Javle and get a CT scan to see what an outstanding job these drugs are doing to these confused cancer cells. This visit will take place on February 12 and 13. Charles, my sweet man will be coming with me and the kiddies will stay home with friends or family for one night. After scans we’ll see if we stay this course or need to make changes.  In addition I will be having another liver biopsy (oh Joy!) this Monday. The first one I had was to determine if the lesions in the liver were cancerous (yes unfortunately) and we also sent the tissue to Boston to do some genetic testing. Unfortunately there wasn’t enough tissue left from the cancer testing to do more testing at the lab in Boston so we must get them a fresh tissue sample. The reason for this testing is mainly in the name of more information. There isn’t necessarily any drug therapy at this point that could target my cancer should I have a genetic mutation that lead to my having this cancer however science is always moving along and the more you know, the more you know so to us it seems like a worthwhile endeavor. The only reason my biopsy won’t take place Monday is if I find out the doctor performing the biopsy is someone out of my comfort zone, my oncologist scheduled the biopsy with a group that we have used before but for some reason they have not been able to tell me which Doc is doing the procedure. This girl doesn’t like surprises, especially when someone is sticking a needle into my liver, thank you very much. So I reserve the right to cancel the whole shebang if it doesn’t sit well with me and reschedule with one of the two doctors I know and trust in the group.

I continue to be lifted and awed by all of you that love me, pray for me think of me and my family, send texts, emails, letters, flowers, notes and tokens of affection. Two very good childhood friends came to see me this past weekend, Laina from Philly and Johanna from the Denver area. They stayed with my earth angel and neighbor Kathryn Anderson and her sweet husband Larry. Let me just digress for a minute to tell you something about how the Universe takes care of us and how God places people in your lives for a reason. We moved onto Preston Avenue 3.5 years ago. We were walking down our street with our kids on their bikes shortly after we moved in on a summer night. Kathryn was on her front lawn and as we approached she introduced herself. Charles then introduced himself and after he said his name Kathryn’s jaw dropped and she told Charles she was his third grade teacher in Metarie, Louisiana. Charles remembered her and ever since then Kathryn has weaved her magic into our lives in the form of great babysitter referrals, having Charlotte attend her amazing Spanish themed girls camp (which is one of Charlotte’s favorite weeks of the summer), graciously hosting out of town guests for us (everyone falls in love with her), running errands, small love gifts on our doorstep, and so many more little things she does for us that lift us, help us and let us know she is with us. Thank you Kathryn for lighting up our lives with just being you!

So I had a wonderful visit with old friends Laina and Johanna, thank you girls for coming out to hang and love on me, it was such a treat! Three days later, Dana came back for her second visit in a month due to a phone call she got from me on a bluesy Sunday less than 2 weeks ago. She knew I was down and decided she’d hop a plane the next day and come out for 3 days. Amazing. I have always known how rich I am in the friendships I have in my life. However, it still brings me to tears and fills me with the most amazing gratitude for the love that surrounds me. There is no better feeling on the planet than true love and I am blessed to have this love weaved around my heart and my soul. It is my very best medicine.

What else? Weight continues to be a struggle due to lack of appetite. A 20 pound weight loss (my son thinks I look better this way, really? My sister would not concur…) is not my idea of feeling strong so I am working hard to pack on the pounds despite never feeling hungry and a shrunken tummy. Good news is that I did gain a pound this week and anyone who has ever had to gain weight knows this is a sloooow process and we must celebrate the small gains, which I am! I am having no more back pain which is fantastic, off all pain meds which we see as a good sign that chemo is working.

I do yoga with Umpa once a week one on one in her oasis of a studio behind her house five minutes from mine. She is spiritual, wise and lovely and we do long restorative poses which are good for my healing. I meditate each day – ok sometimes it’s every other but I am really trying to make this a practice each day. Currently I am doing this awesome guided mediation on healing by Oprah and Deepak Chopra – his voice is so wonderful to listen to and this man is wise and inspiring. I love it! Thank you to my cousin Vince DiFrancesco for sending it to me xoxo. I do acupuncture once a week at Sage Acupuncture with the awesome Michelle. I adore her in every way and look forward to these sessions. Shahnaz comes to my house twice a week to cook for me, dole out wisdom, lift my spirit and remind me that food is medicine. She is brilliant and she is cooking for my health, to be strong for chemo, to support my taxed organs and for the love of taking care of oneself through nutrition. She is something very special. Shahnaz conducted our second meeting perched on the end of my bed, writhing in pain from constipation (that was the day I wound up in the hospital) trying to distinguish my food likes and dislikes. Irma also comes to my house 2 times a week and enters my door with a smile that would knock your socks off. She cleans, organizes and fills my home with joy and promise.  When I interviewed her it went like this: she on one side of my dining room table, me on the other. Five minutes into it I was feeling very unwell and I conducted the rest of the interview with my torso draped on the table looking up at her to not seem rude, ha! Irma was completely unfazed. I swear I could see her soul that day and I knew it was kind. When you are dealing with something big you need to be careful with your energy. You need to surround yourself with people that don’t drain you. I knew Irma was not a drainer but instead she fills me and my gut was right. She is wonderful.

Well, this post seems to be taking more than a few days to get off the ground. It is Sunday night and this has not been a good day. My spirits are low and all seems unattainable today. This seems to be the way it goes for me on day 2 or 3 after treatment. I feel tired and depressed and then the bad thoughts start to gather. I feel somewhat drugged (ok, that would be because I am drugged) and out of it and not like myself at all. These days are the hardest as they rob me of my courage. Alas, I must remember that these feelings will not last. I look forward to a brighter day tomorrow, even if it must include a liver biopsy and the day in the hospital. I will see the positives here, I can catch up on some sleep and perhaps do a little reading.

Nite Nite Everyone,

xoxo

Hi Everyone!

Happy New Year.  Sorry it’s been a while since my last post, thank you Clia for the update you posted to keep people in the know. We had a really awesome visit with family over the break with the Tierney’s (Charles’ sister’s family) and the Saltzman’s, Charles’ parents. The Tierney’s rented our neighbor Jason’s house directly across the street from us (thank you Jason!) and this was truly the best possible set up for lots of family time with bare feet running across frozen pavement and late nights with lots of cousin cuddling. Zoe, Cole and Gigi, my most awesome nieces and nephew happen to be not only wonderful people but are adored and worshiped by Phin and Charlotte in a way that is only possible if you are family. There is no explaining that family bond, it’s just there and it’s magic. And I am so grateful Phin and Charlotte got to have a week of magic, they needed it. For us grown-ups, we had our own kind of magic with Clia and Scott, Cornelia and Charles here we got to be in the family fold that lets us know we are so loved and cherished. Double this with Becca, Steven, Joanne and Bill and we had a kind of safety and security that is beyond words. I love my family and am very blessed.

As Clia mentioned the theme for my last chemo was angels. Clia and I did a lot of crying that day. Not sad tears, just tears of awe and joy, some of sadness I guess but really just taking in all the love and angels that were with us that day. She laughed saying I would look back at that day as the worst chemo day since it was teary but there’s no way I would think that. Having Clia there was a special treat. Let me tell you how the morning started. I woke up and felt really anxious. I also felt weak, which is not a good feeling on chemo day. I like to go in strong. I was in my bed and didn’t want to get out. Charles brought in a protein drink for me. I had a big slug of it and then threw it up 15 minutes later. Nerves, pure nerves. I thought to myself, I can’t do it today, I just can’t. I hid under my covers all morning. I had to be there at 10:20. I spent 3 hours in my bed feeling defeated. 9:50 my phone said. I had to get up, you can’t just not show up to chemo. Something switched on in me and I got out of bed, got dressed and sat at the dining room table and gnawed at a piece of toast Charles made for me. Clia walked in and was surprised to see me up as she was aware that I was having a hard time. We drove to Texas Oncology (which is a 3 minute drive) and walked in and I became, chemo Hilary. This is a persona I have created when I walk through the doors there. I am up, I hug everyone, I smile and I am strong. This just kicks in when I get in there, and luckily it didn’t fail me. We sat and cried and laughed and then Becca and my Mom joined the party and as always, it was fun. Really. The nurse told me there is a one person limit but since it wasn’t crowded she let me have three. I have never had less than three so I guess I am a rule breaker which suits me fine because if you want to beat cancer, you have to be out of the box, right?

We got out of chemo and then had a family dinner with Clia’s family, mine, my parents-in-law and Becca and Steven across the street. I was getting tired and Scott, who never likes to miss an experience, was moving towards the next agenda for the evening – 2 stepping at the Broken Spoke. Steven, also one to never miss an experience was on his feet ready to go. Surprisingly, Clia threw her hat in the ring and said she was in, so of course now Becca is in. Gigi and Zoe were in too. I had not one single thought of going until suddenly I did! I looked at Charles and said, let’s go. I was feeling good, my family was in town and they all wanted to do a Texas thing. Off we went with Charles and Cornelia staying behind to be with Phin and Charlotte, Phin needing the security of family even though there was a sitter watching Henley at our house. (thank you Gran and Granddaddy for being there in that way for him) The Broken Spoke does a class for an hour and then you get to dance with the real folks who know what they’re doing. So we did the class and had lots of giggles then got to dance. Charles and I did this once before and I have to say we did not get it. This time, it clicked. My baby is a very good 2 stepper and we had such a fun night. That girl under the covers in the morning had no idea that she would have such a wonderful day. That’s the thing right now, I’m on a roller coaster that has so many twists and turns. I’m tossed out of the car sometimes and other times I am flying down the hill with my hands up in the air feeling the wind and excitement of it all. I’m learning to ride out the darkness and look for the light. It’s hard work. The dark is black and scary and the lows are pretty darn low. The rise is sweet and light and the light is so kind.

I spent last night at the hospital – I got backed up if you know what I mean. 5 days, no elimination = a trip to the ER. Yesterday was not a good day. Becca and Charles were there with me at home while I tried to unsuccessfully work things out. Becca took me to the ER followed by Charles who relieved her so she could pick up our kids. Then Charles went home and I stayed overnight where things eventually, thankfully got resolved, I will spare you any details.

I did not see Phin and Charlotte at all yesterday. As they were getting ready for school, I was in bed feeling nauseous and unable to participate in the morning routine. Then I went to the ER and spent the night. This morning I was feeling very low. Sad that I missed a day with them, sad that I sort of liked my hospital stay as it’s a reprieve from my everyday life, where I don’t have to measure how my life has changed. I missed a day of eating as I felt too ill to eat yesterday and I need to eat and gain weight, so that made me sad too. My sweet husband called and said all the right things to me as I lay on my hospital bed. Then Becca came to pick me up and greeted me with a hug as I cried into her shoulder. I was just low. Becca hung in there with me, made me eat the yummy food our new cook Shahnaz prepared for me. Irma, who is cleaning for us was there too and she held my hand as I cried on my bed and told me I was strong and I would be ok. Becca urged me to keep the therapy appointment I had made even though I didn’t want to go. I went. It helped. Becca made me walk with her in my neighborhood, it helped, and I felt better. She sat with me, she hugged me, and she talked sweetly and sternly to me. She moved me from the dark into the light today. Not an easy task. Her faith in me gives me strength. Her love for me makes my knees buckle with the weight in the best possible way. I got to greet my husband as he came home with a smile. He hugged me tight when he got home as he always does and I got to receive it because of all of Becca’s hard work with me today. I got to have a good night with my kids because I got pulled from the darkness by my fiercely loyal sister. Thank God for sisters. Thank God for mine.

Tomorrow is another Chemo day. Becca will come sit with me. I will go in strong as that is my will. Kicking this cancer is the hardest thing I will ever do. It has no place in my life so it must go. It is certainly tossing me around a bit but I’m getting wiser.

Time to get to bed my friends, all my love,

Xoxo Hilary

Hilary started her second round of chemo on Friday Jan 3.  She goes in again tomorrow (1/10) and will begin her third round on Friday Jan 24.  Clia and family (Scott, kids and Charles and Cornelia) were in town for the holidays and Clia went with Hilary to her treatment as a “cheer leader”.  The “cheer” theme was ANGELS and Hilary had lots of them with her in the form of notes, pictures, presents and people.  The angels definitely lifted us all up as Hilary, Charles, Becca, Steven, Clia, Scott, Zoe and Gigi went out and whooped it up that night by learning the two step at the Broken Spoke bar in Austin.

Today this came in the mail. They are cards created for me by Johanna, a dear childhood friend. Jo – thank you for these beautiful works of art. The photos don’t do them justice. They have texture and sparkle and truly made my heart happy. These gifts from the heart are so powerful. I plan to hang them in my bedroom so I can look at them and think of you and all the wonderful things you wrote in your note to me.

LIGHT COURAGE BIRTH HOPE LOVE

xoxo Hilary

Today was a great day. I felt really good, no foggy chemo brain, back pain kept in check and I got to race around like everyone else does on Christmas Eve day! Normal, that’s how I felt.

Tonight Charles, the kids and I joined Becca, Steven, Henley, Mom and Dad, at St. Martin’s Church for their early service. I had initially said we would plan not to be there, knowing our kids would complain at having to go and wanting an easy, calm night at home. In addition, I didn’t know how I would be feeling today. Mid-day I realized I really did want to go to church, even though we don’t have our own church and we are not a church attending family. I do tend to like Christmas services with the music and singing however today I had different reasons for wanting to attend. For one, I wanted to celebrate and be with my family. Secondly, I have so much to be grateful for and am trying to arrange my life in such a way where I take in what I have, let go of what I don’t need and ask for help as I navigate my new normal. I am learning to ask the Universe, the Divine my higher power for courage and strength so I can heal. Is this God? For some, yes. I am realizing that what I or anyone else calls he/she/it is less important than simply believing there is a greater power that will offer guidance, strength and love. Tonight, I wanted to be in a place where that belief was present.

We shared a pew in this order: my Dad, Mom, Charles, Phin, Charlotte, Henley, Me, Henley again, Becca, oh, there goes Henley, and Steven. Henley was hands down the loudest child in the church and I loved every moment of it. An hour and 15 minutes is an outrageous amount of time for any child to sit and Hen did his very best while big cousins Char and Phin did a masterful job at setting a good example. My dad, as some of you know, loves to sing. He has advanced Alzheimer’s and struggles to complete sentences now. The moment tonight that made me well with emotion was when I looked across to the end of the pew at my dad, who was leaning forward singing every word of the carol and smiling and beaming at Becca and me. I looked right back at him and in that moment I know he knew we are his daughters and his look told me of a thousand times he’s loved us with that prideful smile, and I got to have my dad with me. There really is no greater gift than to have these moments with my dad.

Merry Christmas Everyone.

xoxo Hilary

Hi Everyone,

Thank you all for the outpouring of love and support for me through, emails, texts, letters and phone calls. Gifts that have arrived with special significance and words of strength, love and hope for me, all this lifts me up and let’s me know that I will get through this.

Thank you to my amazing sister Becca for posting for me on this site and for all the emails you have sent out on my behalf to keep everyone up to date. I have to tell you all that nobody on this planet has a sister as wonderful as mine. Your ability Bec to take on a million tasks with grace and follow through is mind blowing. You schedule and get me to my appointments, take copious notes, help with my kids, organize my entire life, hold my hand when I’m scared, drop everything when I need you, love me through my darkest moments and oh yeah, you also have your own family to care for. There are no words for the gratitude I feel for all the ways you are holding and loving me.

This entire diagnosis has shocked me to the core. I am baffled still that I, 44 and healthy could possibly have cancer. Thus the journey begins to kick it to the curb and recover. I am a person that feels everything happens for a reason, so whatever the reason for this in my life I will learn, heal and move through this. All of you are integral to my success.

I am not sure yet what kind of posts will come out of me on this. I hope mainly to keep you all informed of my progress.

I had my second treatment on Friday with friends Dana and Paige by my side. Amazing that I get to have these girl friends I have known for most of my life fly in and be with me and my family. They’ve come to appointments with me, organized my kitchen and refrigerator, walked with me, raked leaves, set up patio furniture, made smoothies for me and made me drink them, picked out a wig with me, loved on my children, made Charles happy because he knows I’m happy with them here, done errands, asked questions, cried tears that I am going through this but held me tight saying I will get through it. I have always cherished these deep friendships I have been lucky enough to count on my whole life – Jenny, Dana and Paige – thank you for dropping everything right before Christmas to be with me.

Another huge thank you to my sister-in-law Clia who got me through my first visit at MD Anderson which was no small feat. We saw an angel or two, hugged each person that we came into contact with whether they wanted a hug or not and took in the overwhelming scene as best we could with humor. Clia has also managed to arrange from afar a house cleaner, a private yoga instructor (more on this angel later) and a myriad of other people to help make our lives easier during all of this. Nobody could have managed me at MD Anderson other than Clia that week – Cli, thank you for ALL of it.

The treatments themselves have both gone well so far. The severe back pain has been another story, this I was not counting on. This past week was pretty awful trying to get in under control and there have been some dark days for sure. Mom came and rubbed my feet the other day and fed me 5 bites of lentil soup which was all I could manage between the pain and the loss of appetite. It was not a good scene and I’m sure not easy for you Mom either! Last Thursday Becca and I had a meeting with a nutritionist and I was in so much pain that I spend the entire hour crawling around on the floor moaning and crying. This poor woman took it all in perfect stride. I have quickly come to learn that there are going to be a lot of new normals.

Today was a great day – I went to the mall for 2 hours and shopped for my family, buzzing around feeling excited about Christmas. I had a ton of energy (this could be from the steroid I am on) but whatever, I’ll take it! The pain was under control today and my sweet husband who is of course just as shell shocked as I am got to have a much needed restorative massage by our favorite family masseuse Negeen Mosely, http://www.negeenmosley.com/
(of course Becca organized this and did get one herself too)

I have so much to be grateful for and I will find a way to make this cancer journey part of that. Charles and I live on the best street in Austin – we have the most amazing, loving neighbors who have awed us with their generosity and caring. We have food coming from friends and the kids have had more play dates in the past 3 weeks than they’ve had over the past year thanks to all their sweet friends and parents. Thank you for giving them normalcy and happiness.

I have a PET scan tomorrow so we can see the whole body beautiful. Not a big fan of scans so much, they make me nervous. However, the more information we have the better to tackle this beast so onward I go.

Time for bed.

xoxo
Hilary

Life in the world of cancer is turning out to be quite the roller coaster. Good days, bad days and no warning of what to expect. Jenny Reed (Hilary and Jenny have known each other since 2nd grade at Springside) was here from Vermont for the first Chemo treatment. It was tough to listen to Dr. Fain’s Physician’s Assistant explain all the possible side effects of the drugs, but the 3 of us (Jen, Becca and Hills) headed to the infusion room with MANY bags, such newbies, and Hills settled into her chemo lounge chair. I could write an entire chapter on the infusion experience, but to sum it up it went smoothly and Hills sailed through like a champ. Janet, another “angel”, the nurse who administered the chemo cocktail was wonderful. Ashley Ellison greeted us at TX Oncology with a bag of “chemo cheer” from many friends. Thanks to all of you it was a wonderful surprise. Knowing Jenny and Hilary, there were laughs, my mom stopped in which was great and 7 hours later Hilary was at home to welcome the kids.

Saturday was a good day. Hilary felt good physically and she was able to attend Ballet Austin’s Nutcracker with my Mom and Charlotte. Many thanks to Christi Cueller Lotz for making this happen. It was magical, truly magical.

Sunday was harder. We are still learning the pattern of drug side effects and how best to keep ahead of the pain. The Dobberfuhls and Saltzmans went for the annual horse drawn carriage ride through Hilary and Charles’ neighborhood to see the holiday lights. Even though Hills was in pain, she rallied and we were together all bundled up feeling a bit of holiday cheer.

This week Hilary jumped on the roller coaster of pain. I have to say I was prepared for her to be nauseous and flu-like but pain was not on my radar. Monday night she ended up in the ER due to extreme lower back pain, and Tuesday she was admitted to Seton hospital. Tuesday was rough. Really a kick in the ass. Hilary and I went to the infusion center at TX Oncology at 2pm and the nurses gave her all they had but the drugs were not strong enough. Dr. Fain gave her the option to go to the hospital to get the pain under control and off she went. The pain med, Dilaudid, finally did the trick. The cause of the pain is not exactly known but most likely a combination of the tumor, effects from the chemo drug Cisplatin, and the fact that all the drugs she has to take are constipating.  Today her pain was much better. She went home from the hospital this evening and has a pain “patch” that lasts 3-5 days to keep the pain at bay.

Tomorrow she starts yoga with a woman that Clia found and I have a really good feeling about. We also have an appointment with a nutritionist that we hope will work in conjunction with what we are learning from Dr. Luepnitz. Besides the pain, lack of appetite and knowing what to eat is one of the biggest challenges.

Dana Valentine and Paige Reynolds (old friends from Springside) arrive from Vermont to be here for Hilary for the next chemo round on Friday. This next round is only the drug Gemzar  (last round was Gemzar + Cisplatin) so we are hoping the side effects are more tolerable.

All of you that continue to help with juggling kid pick-ups and prescription runs and all the last minute help I cannot thank you enough. Your time, generosity, and willingness to help is truly a blessing.

I leave you with a visual, Hilary doing lunges in her “hospital socks” and IV trailing, up and down the halls of the 7th floor of Seton Hospital last night.

– becca