Hi Everyone,
A quick recap of the week. It’s past my bedtime…
The appointment with Dr. Javle my oncologist at MD Anderson went well. He was “optimistic” we could get this under control and reminded me we treat it as a chronic condition. I still have a hard time with that, I’m in the curing corner still but I’ll take it. He would like me to do 4 months of the same chemo drugs I did when I was initially diagnosed (Gemcitabine and Cisplatin). I would scan at 2 months and then after 4 months we would asses how the lymph nodes have responded. If they have shrunk considerably or even gone away we can then decide how to treat the liver tumors. Since I responded well to chemo last time, we are hopeful I will do so again.
I will need another liver biopsy to see how my cancer has changed, what markers I have which could help dictate the direction of future treatment. I will get my port back in on Wednesday, early morning, April 5. I boldly had it taken out 6 months ago. HA HA HA. Oh well, it felt like the right thing to do at the time.
I am getting a second opinion from Dr. Andrew Zhu at Mass General in Boston on April 7th.
A huge thank you to Katharine Lord and her aunt for getting me a short list of doctors to look into. A round of applause for Dana Valentine for countless phone calls and emails to get me set up at Mass General and in contact with the scheduler and another halo please for Matt Strobeck for once again wielding his magic wand and connecting Dana to a doctor who knows Dr. Zhu so we could get in to see him quickly. And my angel Martin Slagter, who has blazed a cancer trail like no other, has been critical in getting me in front of good doctors, making introductions and taught me how to “triangulate” my treatment. It was Martin that sat with me 2 days after my latest scan at a coffee shop and held my hands as I cried, and peppered our conversation with little nuggets of wisdom and compassion. It was Martin that left me that morning and went home to do research I was too weary to do to help me get my plan together. And Becca, my kick ass sister hasn’t missed a beat and compiled records and dates and scans and blood work to create a summary of my cancer over the last three years. It’s tedious work and she does it with such efficiency. Then she’ll come over and sit in my living room and read off a list of things we need to get done and has it all organized. She creates the track then gets behind me and pushes me down it! To Shahnaz who cooked for us for that first year of my illness, who showed up unannounced at my door because she’d read on my blog that I was sick again, and offered to cook for us again without pay. And my mom who may have one of the hardest jobs, seeing her daughter go head to head again with this illness has been steadfast in her faith that I will be ok. And a girl needs to hear that from her Mama. There are so many others to thank, just know that we feel the love, we really do. Whoever my anonymous benefactor is who gave me 4 massages with Negeen, you know me well, what a treat! Thank you, thank you.
We also had a 2.5 hour phone call with Dr. LaValley, the supplement guy as well as out of the box cancer guru. He generated some good ideas and we’re percolating on those.
There are new treatments since I was diagnosed 3+ years ago. We’ll see which ones I will end up trying after chemo. I’m trying to figure out who is doing cancer research for my type of cancer (cholangeocarcinoma) so I can then figure out how to raise funds for them. Ok, I’m not really doing that, but I think about that because these little rare cancers aren’t getting a lot of press time and you know, we have rights too…In an ideal world I would be active in that area and maybe I will be at some point. At this moment in time all my energy is going towards getting my treatment plan together by getting in front of the people who can best help me. Anyone who has dealt with an illness knows, this is difficult at best and entirely daunting and draining. The rest of my energy is spent being a wife and a mother. I thought I would try my hand at developing some kind of career for myself but it seems cancer is calling again and at the moment it is a full time job. A job I really don’t want. And the pay is shit. When I was first diagnosed I remember being floored at how expensive it is having a serious illness. We have really good insurance. In the last 10 days we have paid roughly $2300 out of pocket because of cancer. Next week with the port placement and trip to Boston, we’ll add to that. How is the average American supposed to manage that? We are not rich but we aren’t poor and if it’s a burden to a family like mine, it’s far worse for many others. It’s not right. OK, I’m stepping away from my soap box.
On a bright note, friends Dana, Jenny and Paige will who all live in Vermont and Erin who lives outside Boston will meet me in Boston on Thursday to go to my appointment with me. This turns a pricey one night medical trip into an entirely different thing for me. I can’t wait to see them.
I was pretty stunned the first few days after I found out. I’ve cried why me, felt hopeless and felt just plain sad. I’ve had my heart break over putting our kids through this again, watching them be brave and being both proud and shattered that they must walk this path. I’ve wanted to take Charles’ face in my hands and look into his green eyes and say I’m sorry for the heavy burden this causes us all to carry. I don’t know if it’s because we’ve been through this before so the learning curve is faster or if I’m in the eye of the storm and I just can’t feel the fury that swirls just past my grasp. Today though, I’m ok. Dr. Javle said to me when we were in Houston, “Well Hilary, you look great, just the same as when I saw you a year and a half ago” and I replied, “I am the same, I just have a little bit of cancer”. I will try to keep that balance. Katharine Lord reminded me, this is NOT my new full time job. I need to do my life and on the side, do what I need to do to manage (or cure??) cancer.
I haven’t started treatment so the rhythm of my life hasn’t been fully altered yet. I do have some pain from the tumors and enlarged lymph nodes. I have lost some weight but am holding steady, trying not to go down that slippery slope of no appetite and big weight loss. This shit is real and sometimes that’s alarming. Summer plans will have to change but we will still manage to do fun things. And on and on we go.
I’m very tired, I’ve stayed up too late. Today though was a good day. We have 5 kids nestled in our tiny house, OPC’s (Other People’s Children) who bring me sweet joy, all their long limbs and breathless chatter.
Nite, Nite.
xoxo Hilary
