Hi Everyone,
A quick update tonight. I heard back from Dr. Javle (MDA Dr.) after he met with an MDA surgeon to see if he thought I was a candidate for surgery at this time and the surgeon said no. This was not a surprise to me but I was peeved that I got a one line email with this news from Javle instead of a phone call so we could discuss it more in depth. I was under the impression there would be a team meeting on this subject including radiologists and apparently this was not the case. Javle and I did get a chance to talk by phone and after pressing him to weigh in with his personal opinion regarding surgery he said he did want me to have surgery to the liver and has set up an appointment for me to get a second opinion with Dr. Steve Curley who is with Baylor Medical Clinic (formerly at MDA). This appointment will happen this coming Tuesday. In the meantime there is another surgeon I want to contact as well so we have several opinions to go from. We have all heard if not said or experienced that you must be your own advocate in health matters and believe me, navigating all this is not for the faint of heart. I am grateful for my somewhat bossy, pushy side because without it I would be far less informed.
The second thing that is in the works is a clinical trial I am trying to qualify for based in Maryland. It’s an Immunotherapy trial and we learned about it from a New York Times article. I am in the process of seeing if I qualify for the trial and there are various hoops to get through before consideration. I did a blood draw today and tomorrow will go in for liver biopsy #3 (ding, ding) so we can send the tissue to the trial people as part of meeting the consideration criteria (don’t ask me what they are looking for in the tissue because I don’t remember but they need a whole bunch of it so another biopsy was in order). While they’re in there fishing for tissue in my liver we are also going to send some tissue off to a place that will try to establish the origin of my cancer. We are assuming it is bile duct cancer but if we can determine with certainty where it originated that will help me on the clinical trial front since trials are created with certain criteria including that all participants have the same type of cancer.
Here is the New York Times article if you are interested:
http://nyti.ms/1kPowfQ
And the abstract (Thank you cousin Jennifer)
http://www.sciencemag.org/content/344/6184/641.abstract
In other news my kids got out of school today, they had a fantastic year and we are looking forward to the lazy days of summer. I can’t imagine this year without the amazing support of Phin and Charlotte’s teachers. I have such gratitude to them for the way they loved and cared for our kids and took extra time and energy to ensure they were navigating their days with ease and comfort. I could weep thinking about they joy and peace of mind it gave me knowing Phin and Charlotte got to go to school each day and just be kids.
We are all also eagerly awaiting the arrival of baby boy Dobberfuhl any day now. The due date is May 28. I can’t wait to get my hands on that baby, those that know me well know how I adore babies. I learned with the arrival of my nephew Henley that the beauty of being an aunt is that when they cry as newborns your don’t jump out of your skin like a wild animal trying to protect your young. That cry just rolls off you as you leisurely saunter over to the baby to see what may be bothering him or even chuckle to yourself at how cute he looks with his face all scrunched up. No getting your panties in a wad, stressed out that you must immediately stop the baby from crying lest you either toss it across the room or dissolve on the floor in tears of exhaustion. Yes, being an Auntie is a role I absolutely cherish. Bring it baby D – we’re ready for you! And I’m sure Eileen who is carrying baby D is also ready for him to debut. I will keep you informed.
Charles and I will be celebrating our 11th Anniversary this Saturday, May 24. We take turns planning the day, Charles has odd years and I have even. I’ll have to wait to see what’s in store for us! This year feels extra special because of what we are going through. It’s like marriage in technicolor – more vivid and alive and pretty wonderful. I love my man.
Time to toddle off to bed as my father-in-law says.
Nite, nite.
xoxo Hilary