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.
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.
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.
Next came my cousins Cynthia and Jennifer DiFrancesco – Cynthia lives in Utah and Jennifer in Oregon. This is Jennifer, Becca and Cynthia
Cynthia pre-bike and our entire bike crew – minus me behind the camera!
Jennifer and Charles
Our most recent visitors were my in-laws, Charles and Cornelia Saltzman who drove here from Pennsylvania!
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
