Hi To all
Its been a while since the last update.Lots of good stuff happening in order to focus on what is important in life. We try to surround ourselves with positive thoughts of what can be accomplished in the short term. We all get very busy so that we are not dominated by Hillary's illness. This weekend we have Pat and Graces graduation celebration on Saturday, Fall Mt graduation, Pierce and Preston's baptism on Sunday morning, Friday Nancy turns 35 years old (she is dyslectic ) and we still need to work.
Actually Hillary has a huge week. She somehow has to save up her energy to do it all. Yesterday she went to the NH Health Information Exchange Planning and Implementation - Planning Kickoff Presentation. She is on this committee with the Who's who of the NH medical Records community. There are only 2 patients on this committee of 40 that is developing the electronic sharing of a patients medical records. Hillary has lots of experience in this and can be a very valuable member if she can keep enough energy to do it all. Thursday is all day medical tests at Dartmouth. It's been 3 months since they found that the cancer had returned. So another PET scan to see if the cancer has spread or if the treatment is working.Hope that the Bone Marrow graff is winning the battle and beating back the Cancer. Then photo pharesis in the afternoon and again on Friday. We have doing that treatment for the last 13 weeks. It takes about 5 hours including the travel time to do a treatment. It zaps all her energy for the day and some from the next day.All she can do after is sleep.
Right now Dartmouth is just doing the tests and sending the results and opinions to the Dana- Farber Team in Boston. Monday we meet with that team to set the next treatment protocol. Dana Farber has more experience with new types of treatment that can help Hillary. We all have tremendous anxiety to see where we will go next. She is scheduled to reduce the steroids again on Monday. Her lungs are functioning around 30%. She still is on Morphine to control the pain which makes her forgetful. In the meantime we bury ourselves in the good things in life. Smell the flowers, celebrate birthdays, graduations, baptisms, end of school year. Xander is moving onto the second grade. Hillary Jon, Xander and Nancy are headed to Washington DC next weekend. Nancy has a conference and Hillary wants to have Xander experience the big world with her.It makes Sense but it will take energy. I don't know where she will get it all.
Most of Hillary's time is dominated by treatments, medication and sleeping. I have trouble believing how much she can accomplish in her condition. We are very lucky to have so much support to get us thru it all. Nancy talked with her best friend from college last night. A call from Betsy always brightens up her day. I had a very special visit from Tad and his brothers last weekend. He was my Best Man at our wedding. They just seem to know when we need that extra help to get thru. I had a person I casually knew that he has kept Hillary in their prayers. I had no idea that he even knew about the situation. What a powerful emotional feeling to know how much support we have. Thanks All Keep the Prayers coming.
Vic, Nancy, Patrick & Grace, Allen, Pierce, Preston , Heather, Jon, Xander and especially Hillary
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."