Time for another update! I went to Houston on Tuesday for my follow up visit with Dr. Curley. All went well, I got the dreaded drain out, FINALLY which I am very happy about. My blood work looked good with the exception of my protein which was too low. This is actually very important as my liver needs protein to grow and it will beg, borrow or steal protein any way it can get it, including my muscles. So I must ramp up the protein. This should also help my energy level.
I got the path report back a while ago from the surgery and I guess I have been reluctant to post it for some reason. I think the whole thing is anxiety provoking for me despite the fact that the report was good. So here goes:
All 4 tumors that were in the right lobe of the liver which as you recall, was entirely removed, showed 40% – 50% active cancer. That means I had a good response to the chemo drugs because 50-60% of the cells died from that treatment. Remember that miraculous PET scan? Not really an accurate picture of what was going on, BUT we have removed all the things that had knowable cancer in them through surgery. He took out 2 lymph nodes, one containing 20% active cancer, the other benign. There were clear margins and no growth in the blood vessels. When I asked Dr. Curley how I should feel about the report he told me “it’s the best you could hope for, there’s no measurable tumor you are healthy and doing well.”
Funny, looking back on this last year (a full year being this November 15), I feel like it was all pretty doable. The beginning was the worst by far, the fear, being catapulted into a reality I so desperately could not grasp and the pain, hospital stays, and learning how to manage the chemo, just to name a few things. Now, I am facing a few more rounds of chemo most likely, continuing to recover from surgery and oh yeah, trying to live my life differently. That’s the kicker. I know my truth, my soul, my spirit will not thrive and be healthy unless I can incorporate the lessons I have learned. Yet I feel myself falling back into old patterns and it scares me. Am I cancer free now? Yes, I believe I am. Now that I have been stripped of my innocence, I can’t pretend to not know the things I know. Can you remember a time that was magical for you? A summer away from your family as a child, a weekend retreat, a meaningful interaction with someone that made you go A-ha! Something that changed the way you see your world? Something that shifted inside you that felt epic and important? You want to hold on to that feeling, the knowingness that you learned. You want to remember that flicker of connectedness. That’s how I feel about this past year. I not only want to carry it with me, I want to live it. I want to incorporate it into my daily life so I can feel it’s greatness. This is so much harder than I thought. As my brilliant and kind therapist Elizabeth said to me a few days ago, this is the when the real work begins. She’s right.
Last night Charlotte was crying in her bed and Charles went in to see what was wrong. I gave them 5 minutes then I went in too. She had told Charles she wished that she could go back to when she didn’t have worry, to before I had cancer. After those words landed like a lead balloon on my heart and I felt like sitting on the floor so I could rightly sob, I dug deep for my Mommy wisdom and proceeded to normalize her feelings (thank you Masters in Marriage and Family Therapy) and just be with her in her sadness. I hate that along with my innocence my children must lose some of theirs too. What I am grateful for is that Charlotte spoke her truth and felt safe enough to convey this to us. I was worried about how much she was processing because she has been very social, out with many friends, doing many fun things and not talking much about my illness. She has been keeping herself busy quite on purpose I’m sure. I know my hospitalization made it real for her in a way that had not existed before then. She expressed the need to stay closer to home, to be more in our orbit and we are all too happy to comply.
So, what’s next? I need to schedule a meeting with Dr. Javle in Houston at MDA to discuss when to start chemo and what type of drugs to use. That should happen in the next 2 weeks or so. Until then, I’ll be trying to find my center, grow my liver and generally take one day at a time.
There is a long overdue thank you I must make for this website. When I was first diagnosed, Becca and Clia thought a website would help keep everyone informed and also serve as a place I could write if I so desired. They started asking around and my friend Clayton Maebius put them in touch with Kevin Sweeney a fellow Trinity parent. Kevin put this entire site together for us for free and has been helping us along the way each time we have questions. I am so very thankful that he did this for me. Yesterday I just so happened to be in carpool line for Trinity and Clayton was ahead of me in the next lane. She texted me wanting an update so I walked over to her car. She said I should update my blog and then she said wait, Kevin is in the car next to me. I finally met Kevin and got to give him a hug almost a year later. Thank you Kevin for giving us your time and energy to get this up and running for us, we are so appreciative that you stepped in to help. Thank you Clayton for asking Kevin on our behalf!
One more thing before I sign off. Some of you know that about 7 months prior to my diagnosis I became involved with Beautycounter, a company whose mission is to get safe beauty products into the hands of everyone. I became involved because I want to know what is in the products I use on my skin as much as I want to know what’s in the food I eat or the products I use in my home. Unfortunately, here in the US we are woefully behind places like the European Union when it comes to regulating ingredients that go into our products and this includes labels. There are no laws that govern what a company puts on a label, meaning they can use an ingredient like formaldehyde in their shampoo or lead in their lipstick but they don’t have to disclose that on their label, REALLY?! I am just as passionate about Beautycounter now as I was when I signed up to be a consultant a year and a half ago because the products are safe and they are working with non-profits like the Environmental Working Group to pass laws for stricter regulations. Beautycounter already launched skin care, shampoo/conditioner for kids and adults, and sunscreen. Now they have just launched color cosmetics! If you want to learn more about Beautuycounter and it’s mission, click here:
http://www.beautycounter.com/our-story/?ConsultantFirstName=Hilary&ConsultantID=2470&ConsultantLastName=Saltzman#ourmission
If you want to browse products, here is my website:
www.hilary.beautycounter.com
Ask me questions, share with friends, give as gifts, give to yourself. Your skin is your biggest organ, it makes sense to me to know the products I’m using are safe. Give me an Amen! Ok, end of plug 🙂
xoxo
Hilary