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."

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Monday, June 8, 2009

Monday! Monday! Monday!

**Remeber The Advocacy Training Event Tomorrow: June 9th 6pm @ The congregational Church on Pleasant St. Learn to make a difference! Now is the time for change.**Hello Everybody, Life has moved on and We’re back to Monday.
I have a dail grind too.
I bet you wouldn’t believe.
I bet you also wouldn’t believe that I enjoy it since I haven’t had the ability, healthwise, to do any sot of routine for any amount of time for what seems like forever, at least for the past three years, during which Xander has gone from a newly birthdayed 3 year old to a tall, strong, fully personalitied 6 year old.
His projected height is 6’2”. I did the calculations yesterday.
There are a lot of changes that go on during these three years. It is more clear when you have a mini-you trailing on for the adventure.
Obviously, I wouldn’t have had it any other way.
But today, due to my decision to just accept my current state of health as a livable and pursue a quality of life. I can have a “routine.”
Yes, routine, a much loved parents safety net. It makes life predictable for the kids. Getting dressed, cleaned, brushed, and out the door just flows easier since the little minds we’re molding know what to exect.
There is comfort in routine. There is safety in routine, and this is one of the major development goal of the under 6 age group: teach them the world is safe and help them learn to explore.
Check the theorists people. I have all ready gotten my education in this, but Piaget and Fread will back me up. Check big words like “rapproachment.”E/Si2atgA3T6I/AAAAAAAABts/KQjEdbFr0Es/s1600-h/freemonday.jpg">There are clearly special considerations in child development that need to be taken when the child is developing his sense of love, safety, and connectedness to the world in terms of TWO parents with chronic, life threatening diseases (my husband has Crohn’s disease, an irritable bowel disease, that required an extensive resection last summer).
We are doing the best we can with the information we have.
I want everybody else to have more information than we do if they ever have to face serious, near fatal diseases while rearing children.
That’s part of why I write.
The routine is back on. Hooray. It’s not quite the “hum drum” of everyday monotony I looked towards in fear during my twenties that one day would seemless blend into t he next and I would be doomed to a lifetime of board.
It’s exciting.
I have duties because I am now capable of contributing due to my health, a health status I haven’t experienced for any prolonged period of time in the past years.
To the commenters: I have special words for you: Quote away. I love that you feel I am “quote worthy.” I’d love to see what you write, but in general, you all havemy permission. Thank you for asking. Legally, and I speak “legalese” you don’t have too because I have accepted the role of a “public figure” by broadcasting my life, but I do enjoy knowing what is being said. Feedback is a part of life.
TO LAURA Z.- We wouldn’t have to do battle of the lamps if you two would return my phone call to get to decorating that gorgeous home you have! I am itching to get my hands on you to beautify your space. I know exactly where we are going for the deals.
Everybody else, if you want to know where we are going for the deals, it is EarthDeco, 1 Glen Road, W. Lebanon, NH, across from the Powerhouse Mall. Call (603)298-2172. If you are from out of the area his website is
Unfortunately, Trevor is a tragedy of the times. He opened his beautiful eco-friendly home décor store a month prior to the fall of Bear Stearns, when suddenly the whole atmosphere of America changed and even those who were of the thought process that sustainable design is necessary and morally right just weren’t purchasing.
I have to say, the thought process of the time, and even in my drugged, actively treated state I could tell, that no one was spending money anywhere out of guilt that others were losing so much so quickly.
I know when I reach into my wallet know the hundreds of twenty-something friends I know who have lost their jobs and are frantically looking for work to feed their families, good people, good workers, out of work, certainly cross my mind.
I don’t go in my wallet much for non-need based purchses.
This economy induced mindset has sent an anxiety through me that I am wholly going back to farming. Thankfully Ihave the space and the health, but it certainly doesn’t lend to purchasing gorgeous, sustainable, high end design, the future antiquities of the world, pieces.
But if you are furnishing a home or if you do want to take a peek the inventory in the store is 20-50% off. It is worth the value.
Take it from a girl who knows, who has studied this area as a hobby. My favorite texts are Architectual Digest, Vogue (it does have design sections, but you must also look at the furniture in the shoots), Builder’s Magazine, and of course, the “lady of the house” journals “Better Homes and Gardens,” etc. etc. and so on.
Go shop if you’r in the area, and Laura & Doc, return my phone calls, or you’re missing out for that beautiful house to be furnished with great décor at discount prices.
Doors shut on June 30th. The owner, Trevor, who has an MBA of Yale, has reassigned himself with Habitat for Humanity and will be headed across the world to Thailand.
As much as I dislike seeing a young, Yale MBA educated,(and dare I say Handsome?) entrepreneur go halfway across the world,
help this guy get on his way, minus the broken heart and bruised ego.
I did give him my card and request that we be penpals. I'm hoping this helps the hurt just a little.
If not, It’s just a sign of the times, Trevor, your concept of great. Come back here when you’re done building houses! Find us at Five Eagles Design ( on, I preparing for X to have his tonsils out TOMORROW!
Poor guy doesn’t know exactly what he is in for, but he knows he is in for some pain. We’ve been preparing. His teacher is aware he will be absent. I may bring him to school in the afternoon for fun time and field days if he is well enough.
Charelestown Primary School has been so wonderful in working with our family for the best possible outcome for Xander WITH EVERYTHING.
They have a wonderful, multi-faceted team that communicates so well. I couldn’t ask for more in a school district.
X will be attending the N. Charlestown Community School next year, which is only ½ mile away from our home.
By a stroke of luck, his teacher is also someone we have know outside of school as a fun friend. Her daughter is Xander’s age. We had the luxury of seeing her, the classroom assistant for next year, and the rest of the primary school, & Fall Mountain School District Team, last week.
We were finalizing Xander’s IEP, which has been in place since he was two (prior to my diagnosis) due to his constant ear infections resulting in conductive hearing loss and a speech delay.
I’m happy to know he is catching up. THANKS ANNE, who has been with us from the start. She is also a long time friend from my own school days mother. This is the benefit of living in a small community where you grew up yourself.
Anne watched me grow alongside her daughter, very closely alongside, since we were very close for a while, and now she is routinely participating in Xander’s life.
We are so lucky to have these people in our community and in our lives.
I am absolutely gushing. I love Anne. She has been a stable part of Xander’s life through speech therapy since he turned three.
She is wonderful in her work, in her routines, and in her professionalism. We are lucky to have her.
Sidetrack aside, I’m shopping for Xander’s anticipated post-surgical needs. He’s made me a list of wants: mashed potatoes, meatloaf, iceys, juice, goldfish, jell-o, pudding, and apple sauce.
We’re celebrating my mom’s birthday tonight (the real day is June 11th and no, I’m not telling the age, it’s not polite to even ask.

1 comment:

Anonymous said...

Just a word of encouragement about Xander, Hillary.

My younger son, who is turning thirty this summer, also had a great deal of difficulty early in his life with upper respiratory and subsequent ear infections. I realized it finally when I would go into the nursery and see all the children sitting around the teacher who was reading a book to them while little Michael was in another corner of the room blissfully putting puzzles together. By the time I got him properly diagnosed and did the tubes in the ear thing, he had lost about 40% of his hearing. Despite that disadvantage, which caused some developmental problems in his speech and vocabulary acquisition, he grew into a wonderful young man who is now expecting his first child. He owns his own engineering company in Northern California, has great health, a wonderful wife, and great friends. The residual problem he has hearing-wise is discriminating out sounds in any loud and chaotic situation. If he is in a crowd with lots of extraneous background noise, he won't hear you call his name. Otherwise, he is clearly functioning at a pretty high level.

I tell you this to reassure you that as parents, we sometimes unwittingly mess things up for our children. But somehow, it seems to come out right if we love them and help them overcome any difficulties that we ourselves may have inadvertently put in their path.

I am so happy that you are taking care of Xander's tonsils...the sooner the better. You are making a good choice for your child.
I am also happy that you finally get those ordinary days we all dream about.