Month: April 2014

Chemo Cheer Due Fri May 2

Hello all –
Well the Saltzmans had a fabulous time in North Carolina. Hopefully, Hills will post soon and give a more detailed update but it sounded like it was a great get-a-away. Hilary was supposed to have chemo yesterday, but that pesky thing called insurance is rearing it’s pain in the ass head. Long story short, she is waiting for their new insurance for approve this next round of chemo. Charles is now full-time with Charles Schwab (yeah) so their insurance changed and while this is a pain right now, long-term a good thing. She still went in for blood work yesterday and her counts looked really good so she is physically ready and will do her next round as soon as the insurance is a go. The next big event is Hilary’s second set of scans at MD Anderson on May 7th and 8th. We hope and expect that the tumors will continue to shrink and the doctor will order another few months of chemo. Maybe a slightly different cocktail, but more on that after her trip to Houston. 
Thank you Katie Marye so much for the last cheer. Since no chemo Monday, Katie and Hilary will do the cheer when she gets her chemo. I can’t wait to see/listen to all that was submitted!
Our next leader is Jill Ciarimboli Wynne. Jill is an old friend from San Francisco days and doing this from afar so the deadline is a bit sooner to give her time to send to Austin.
She is going to put together a book for Hilary.  The theme is “cultivating calm and peace.”  She would love to have everyone email a picture of where they go to cultivate calmness and let go of anxiety. It could be a place you have been to with Hilary which you know she loves or just a favorite place which feels grounding to you.  Ideally, if Jill can get the pictures by this Friday, May 2 but if not, at least by end of day Saturday.  For the pictures, it would be nice to include a few sentences of where it is, and why you love it.  (just a short description).
So send in your pictures of Calm and Peace and send to Jill by Friday!
Thank you all for your continued support.
 xo – becca

 

Chemo Cheer DUE Thurs April 24th

Happy Easter! Hilary had her treatment day 1 (2 drugs) this Friday. All went well. Thank you so much to Lucy Butter who lead the cheer theme of “Choose Joy”.

We (Joanne and Bill Bruce, Hilary, Charles, Phin, Charlotte, Gerry Dobberfuhl and Connie Mack, Becca, Steven and Henley and neighbors Laney and Cooper Bevill and Tracy and Augustus Gartenmann) celebrated yesterday at Hilary and Charles’ with a lovely brunch, made by Shahnaz, and Easter egg hunt complete with confetti and silly string! Dad is out of rehab for his hip, he broke it about a month ago, and celebrated his 80th birthday April 15th. He has definitely slowed down and slept most of the day but nice to have him with us. Hilary and family flew to Hatteras, North Carolina early this morning to spend the week with several families including good friends Dana Valentine and Jenny Nichols Reed. Hilary got the green light to move her day 2 treatment (normally this coming Friday) to Monday, April 28th so they could spend this week relaxing and enjoying old friends on the beach.

The next chemo cheer will be lead by Katie Marye. The theme is “Music” and Katie is really looking forward to putting together a playlist for Hilary. She will put the songs on an iPod Shuffle along with a list of who submitted each song, and any background information you would like to provide on your selection. This is the time to reach way back to your memories of Hilary and music or music of the times, funny stories from way-back, or just a great feel-good song to help get her through her chemo day.

If you can check that your suggested song is available on iTunes would be helpful and please have the song and any stories or words you want to include with the song to Katie by Thursday, April 24th.

Hilary loves music, loves the words to songs and I know she will really enjoy this. I have so many memories or her listening to tapes in her room, making tapes and tape covers for friends, and telling me I was singing the wrong words! Have fun with this and as always please pass along to anyone who wants to participate.

Happy Easter, Happy Passover and thinking of all those runners tomorrow in Boston.

xo becca

April 12, 2014

Thanks to all of you that have responded with ideas for getting breast milk. To clarify, I am looking for the first 4 days of milk from the day the baby is born, trying to capture that colostrum. Someone that gives birth and isn’t planning to breast feed but would be willing to pump for 4 days would be the ideal person! I realize that scenario isn’t easy to come by.

It’s Masters day in our household today. (as in golf) Charles’ birthday which is tomorrow usually falls around the Masters which for him is real treat. However, I am inside typing this while the TV is on and Charles is outside in our front yard digging a hole for our new Mexican Sycamore Tree. Golf on TV reminds me of being little and my dad having it on and feeling like a nap would be ideal with the golf commentary lulling me to sleep. I will admit I do enjoy watching golf and watching 19 year old Jordan Speith today is exciting.

I have been off chemo for almost 2 weeks with another week to go before I start round 7. I would think I should be feeling pretty good with this longer break but I am tired and feel a bit run down. I decided to get a blood draw yesterday so I can see where my neutrophils are, but the results which should go on my portal are of course not there, so hopefully on Monday I will know.

Charlotte is at her friend’s house across the street playing with their new hamster and dreaming of one of her own according to my friend Bridget, the mom of the friends across the street. Sadly this will not be happening in the Saltzman household. She really wants a pet of her own and captured a small tree cricket (named Elsa) when we were camping last weekend and put it in her bug trapper. She dutifully gave it water and some flowers to eat and then took it out to “play” – and wouldn’t you know 40 seconds later Elsa hoped off her hand never to be seen again. I was all in favor of Elsa as she was a very tidy and easy pet but her tenure here was a mere 3 days.

I am actually in favor of a puppy or a dog that is older but Phin is very much against this idea. He is adamant that a dog would ruin our cat Benjie’s life and he doesn’t want Benjie to be scared in his own home. He has a good point but I think Benjie would adjust. I realize a Hamster would be far easier to care for…

Alright – time to go get the birthday boy’s cake, and it will not be a tofu cake or one made of greens, because really, who wants to eat that?!

I hope spring has sprung wherever you are and you are out enjoying it!

xoxo Hilary

Yoga on Thursday with Upma

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Chemo Cheer DUE Thurs, April 17th

It’s chemo cheer time again! Clayton thanks so much for leading “Pay It Forward” even though Hilary had to skip the last treatment.

On April 18th Hilary will start her 7th round of chemo and the theme is “Joy.” Lucy Butter is leading and would love for the group to, between now and Thursday am, April 17th, send her their examples of ways they are deliberately choosing joy each day. It could be by setting your intention do so because…… (you are grateful or thankful for something, relieved about something, etc). It could be as a result of something that happens to you during the day—-the gorgeous spring weather, a long walk with a friend, etc. You can send several or only one. And all this done in honor of Hilary, but with the hope that we are all more able to “choose joy” everyday!

“We cannot construct joy. We can only receive it. But joy is not something that “happens to us”. We must choose it every day. We choose it every time we let ourselves be loved; when we forgive and are forgiven; when we hope instead of dread: when we give thanks instead of demanding to know “why”; when we have faith in the One who sees us, who knows us, and who loves us. Why should we consent to mere fleeting, capricious ‘happiness’, when joy only awaits our intentional, loving “yes” to make a home in us? Let’s choose joy!” Sally Robbins

As always, please feel free to pass this along and thank you for participating! It really makes such a huge difference in Hilary’s journey.

 

March 8, 2014

One more thing I forgot to put out there to the Universe. I mentioned I am working with a man in Marin County, CA and he’s given us some recommendations. He included this one and admitted it was unconventional for sure but included the data that supports it. That being said, I am looking for anyone in the Austin area that would be willing to part with some of their breast milk. Yes, you did read that correctly. More specifically, I need breast milk from the first four days of when lactation begins. So, if you know an over producer who would be willing to pump or someone that wasn’t going to nurse but would be willing to pump for 4 days, please put them in touch with me so we can chat. Then I’ll invite you all over for almond/breast milk smoothies – actually I won’t because we all know breast milk is liquid gold and I will be unable to share my stash! Seriously, this is not chemo brain talking. Here is the support for it from my advocate, if I get some I promise I will poll all of you for breast milk recipes:

This is somewhat exotic but should you have a friend or acquaintance in your
community who is open and willing, then consider fresh human milk ( (first 4 days of lactation) – as much as is available (Hamlet Project) Natural substance inbreast milk destroys cancer cells: Breast milk is documented to be
the best food possible for infants and breastfeeding is known to
have enormous health benefits for moms, too. Swedish
researchers have found that it contains a compound that kills
cancer cells in humans. The substance, dubbed HAMLET (which
stands for Human Alpha-lactalbumin Made LEthal to Tumor cells),
is comprised of a protein and a fatty acid. HAMLET was first
discovered by chance several years ago by researchers who were
investigating the antibacterial properties of breast milk. Scientists
soon began testing it on cancer cells, studies in the lab showed
that HAMLET was able to kill 40 different types of cancer cells.
Using a fluorescent red tracking substance to show the exact
location of HAMLET, the researchers clearly demonstrated that
the compound binds to the membranes of tumor cells, killing
them.

over and out xoxo Hilary

April 7, 2014

Hi Everyone,

It has been a long time since I have written, my apologies for that. Life has been busy! Where to jump in…I guess I’ll start with my most recent goings on and work backwards. This past Friday was supposed to be the second infusion of round 6. Welp – apparently I am not Wonder Woman after all – for even I am now experiencing a common chemo side-effect, low neutrophils. What you ask? Simply said, the neutrophils are your first responder white blood cells. Chemo of course kills the good along with the bad and the stem cells in your bone marrow can’t keep up with the hammering it gets from the chemo and viola – you get a low neutrophil count. In order to get my chemo, that count needs to be 1,000 or higher. On Friday my count was 600. My body is too susceptible to infection with that low a count therefore no drugs for me. We are skipping this part of round 6 and taking a breather to let those little neutrophils get all revved up for the start of round 7 (ding, ding) on April 18. This seems to be a new pattern as this happened during round 5 between infusion 1 and infusion 2 but my count was 900 and we didn’t know that until after I had gotten the drugs so I sort of slipped through the system that time. Now we will most likely need to come up with a plan for how to manage this new twist and I’ll be sure to keep you posted when said plan is created!

There is so very much I feel l want to fill you in on. I have had so many visitors that I am not sure I can do them all justice now that time has passed. These friends and family members have taken time off work, hired child-care, spent hard earned money, used vacation time, rearranged schedules, left loved ones and I not only appreciate and love them for it but it feeds my soul. How about some pictures?

Childhood friends Susannah Ewing and Leigh LaMent from Springside school and Chestnut Hill came to see me together traveling from Mill Valley, CA and Philadelphia, PA.

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This was followed by a visit from childhood friend Laura Foulke whom I have known since we moved onto Summit street in Chestnut Hill in the middle of my first grade year. Laura’s house was directly across the street from mine and we have been life long friends overlapping in San Francisco,CA where Laura still resides before we moved here to Austin.

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Next came friends Sarah Hunter and Heather Shoultz – we met in Seattle when I lived there almost 15 years ago and they both still live there. This photo also has friend and next door neighbor Julie Wilson (who is a frequent visitor!) and my sister Becca.

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Next came my cousins Cynthia and Jennifer DiFrancesco – Cynthia lives in Utah and Jennifer in Oregon. This is Jennifer, Becca and Cynthia

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Cynthia pre-bike and our entire bike crew – minus me behind the camera!

Cynthia Bike Bike Group

Jennifer and Charles

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Our most recent visitors were my in-laws, Charles and Cornelia Saltzman who drove here from Pennsylvania!

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Thank you ALL for all for making the effort, for caring, for showing up and for loving us so sweetly. It is a treat each and every time someone I love comes to Austin to visit.

To switch gears a bit, some people have asked me if I am still selling Beautycounter (for those that have no idea what I’m talking about, Beautycounter is this fabulous company with a mission to get safer beauty products into the hands of everyone.) YES! I am still selling Beautycounter. Visit my website if you want to order something www.hilary.beautycounter.com or email me or call me and I will gladly help you.

My sister tells me people are asking how I am doing. (hint, hint Hills, update your blog) I am doing well, really! I have tolerated chemo really well so far. I am walking daily, doing yoga too and eating cleanly. I have gained 10 pounds back of the 20 I lost, which goes a long way to making a girl feel a whole lot better. I have an appetite now (yippie) and I have many many normal days now where I am not thinking about cancer. Charles has decided to eat in solidarity with me and bless him he is finding out it is a challenge. I make some concessions for him, like he still gets to have coffee and half and half and he had a hot dog when we went camping this past weekend. I cheated a bit too if the truth be told – no hot dogs but I will admit to having one of CJ’s amazing gluten free macaroons and a few Poppers which are essentially potato chips. Charles is doing very well and I love him for wanting to help me in this way. I still have my hair although it is thinning now. I hope it won’t totally all fall out but alas, I have no control of that so I’ll keep you posted. I go back to MD Anderson to see how awesomely I am doing on May 7.

Becca has transitioned chemo cheer to the care calender (scroll down the main blog page for details on this). I just wanted to thank Meredith Lamme for doing such a great job heading this up and making it happen, thank you Becca for finding chemo cheer a new home and Clia for the idea in the first place. THANK YOU LADIES! I can’t tell you how amazing chemo cheer is. I don’t know the theme until I am sitting in the chair and it’s like Christmas each time. I have laughed, and cried, I have been touched to the core of my soul with all the love, honesty and true humanitarianism of all of you out there that care about me and my family. The funny thing about chemo days is that they are fun, really! I’m not kidding. I get to sit and really visit with the people that come with me. I get to read, look and hold cheer items. I get to hear from people from all different parts of my life. It is truly amazing. I want all of you reading this to know how hard I am working to heal and how much you are all a part of what keeps me focused, motivated and energized. I don’t know what I have done to deserve all the blessings that have come my way in the last 5 months but I see them and I am taking them in and I am so very thankful. Here are the cheer themes that have been done so far:

HUGS, ANGELS, HUMOR, LOVE, INSPIRATION, PATIENCE, SELFIES, PAY IT FORWARD

Pay it forward was cheerleader Clayton Maebius’ cheer for this past Friday. Clayton and I walked to treatment together (I walk to and from treatment which is such a great thing to be able to do!) and Clayton was with me when the PA Kathrine told me I couldn’t get treatment that day. I hear Clayton go Nooooo! Clayton had patiently waited her turn to come sit with me and now it wasn’t going to happen. We took the long way home and decided to go ahead with the cheer anyway. We sat on my back patio and I read each piece sent in by friends about things they had done to pay it forward in my honor or times they have payed it forward in the past. I loved each and every story, and it was such a good reminder about the joy simple kindness brings to the giver and the receiver. It’s so easy to pay it forward in little and big ways and it’s so fun to bring light into someone’s life that isn’t expecting it.

Speaking of paying it forward I want to thank my dear friend Dana Valentine for the foresight and execution of getting the gofundme site up and running. This was entirely Dana’s doing and wow, it was such a surprise to us. Charles and I would sit on the couch in our living room and look at the donations, read the messages and cry. Many of you know that Charles had been unemployed for over a year and was two months into a new job when I got diagnosed. We hadn’t even gotten back on our feet when the floor dropped. This fund has allowed us to focus on healing in a way that simply wouldn’t be possible had Dana not initiated this and all of you not contributed. How is this money being used?

Medical bills that aren’t paid by insurance

co-payments for treatment and medication

lodging at MD Anderson

we hired an advocate out of San Francisco to delve more deeply into my case and help us with various resources – he charges us by the hour for phone sessions

we also pay by the hour another type of out of the box thinker in Marin County – SF Bay area who is treating me with Chinese Medicine and working in conjunction with my acupuncture person here and also giving us various resources. All of the supplements I use are out of pocket expenses and aren’t cheap!

acupuncture once (sometimes twice) a week with the fabulous Michelle at Sage Acupuncture

twice a week cooking from Shahnaz who cooks healthy meals and knows a ton about foods and healing

Irma who comes twice a week to clean our home and do the laundry and organize our lives in a way that allows me to not stress

once a week one on one yoga with Upma that is tailored to me specifically for healing and strengthening my immune system

Childcare when I can’t be there with Phin and Char during treatment days or on the rare day I am just not feeling well.

Online mediations with Deepak Chopra and various books on healing, inspiration, and cooking

There will be flights to see other doctors, lodging and expenses that come along with those kinds of trips and I am hoping to do a retreat specifically for people with cancer in Bolinas, CA called the Commonweal Cancer Help Program

http://www.commonweal.org/program/commonweal-cancer-help-program/

ALL of this is possible because so many of you were able to give. Please know that we are grateful and very humbled by your generosity.

I will leave you with a photo of something I came across on our hike this past weekend while camping at Inks Lake.

Time to read in bed,

Nite, nite, xoxo Hilary

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