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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Wednesday, May 27, 2009

Back To Reality

*This was meant to be posted yesterday morning. I guess I had a little more trouble than I though tI would delving back into reality. You'll read why in a second. Happy week everyone***
I’m getting back to life. I’m getting back to reality.
Or so I thought.
My little trek to “The Farber” last week through me for a little loop.
I guess that’s an understatement, because my brain is still whirling wondering where this or that piece of writing that was so good and I really wanted to share yet.
I haven’t made the final decision whether life in a notebook and pen world was easier than my now three writing technology (HP laptop, MAC desktop, and blackberry curve) that can be accessed from everywhere and anywhere.
I think I’m just not quite as educated as I need to be in technological organization.
I need a Jil fix. I need some Jilly and Hill time.
Everybody, in today’s world of ever changing modern technology, should have a Jill to consult to use your blackberry, IPhone, whatever to it’s full capacities.
Once those babies get going, there is no going back.
Yes, I am in desperate need of Jill and Hill time.
But not today, because I’m trying to get back into the swing of life, which has met some minor road blocks.
Thanks to the steroids I felt well enough to do something crazy, something not-so-Hillary-like recently. I was feeling so well that I made advanced plans.
Unfortunately as a side effect of my minute to minute health changes I can no longer make decisions regarding the future.
This has been extremely hard for me to cope with, since I am a Type A, meticulous, “planner.”
I like an idea of how things are going to go, how they’re going to go there, and when they are going to do that.
My disease has certainly robbed me of this personality trait I held so close to my heart and my inner self. Being organized, aware, and prepared was a cornerstone of who I am.
To lose this aspect of myself was devastating.
It also has ben incredibly scary because I associate it, not with just a change in mental capacity, but a decline.
I’M LOSING MY MIND!!!That’s how I’ve been reacting to this side effect.
I know, I know, it’s a side effect.
It’s certainly a very well, understood, highly studied phenomena (sarcasm). The ailment has been apply named “chemo brain,” maybe by a patient.
Hopefully, they never start calling it “Hilary Brain” then I know I;m really screwed, because I have become the primary textbook example of flakiness and lack of long term planning, failure in upper cortical function and organizational behavior.
I never did get those Doctor’s that discovered a terrible disease, and then so proud of their discovery, named the misery after themselves.
Did Dr. Alzheimer really wanted his legacy to be images of declining senior citizens singing out windows in the darkness of the night, running down halls with their knickers around their ankles, or crawling out of bed breaking hips? I don’t think so, but that’s what he got.
Be careful what you wish for when you’re looking for infamy.
So I said I was getting back to reality, but the truth is the plan was I was supposed to be well enough to aid my poor mother in her recovery from a hysterectomy which took place last Tues. when I was an inpatient.
Then, of course, because I was discharged a magic wand wasn’t raised and my gastroenteritis was still bothersome just manageable.
Thursday was a day of relative health, but I think that was more the adrenaline kicking in due to the steroids and trying to make up for lost time.
Then Friday, the creeky, squeaky talkative tummy started as a nice friendly warning that the runs were coming.
Yes the runs, with gas so bad I couldn’t even get away with blaming it on the dog, my son, or my husband who has crohn’s disease and is notorious for some of he worst smells humanly possible.
Immodium didn’t work. Then I’d become nauseas. I’d take some ativan because it is most effective. It was also what I had on hand.
Then I would fall into a relaxed haze or a dreamless sleep in comfort. That was how the weekend went, back and forth between bottles of pills trying to prioritize what I get could into my system and keep into my system (because if I were to take everything prescribed and holistic I certainly wouldn’t have held any of it down), and then enjoying the peaceful haze in between.
Which was actually great, because despite how sick I felt, I got to enjoy time with Yanellie, Chris, and their two kids, Isaiah (4) and Victor (3).
Yanellie is a best friend cum sister from college who I love dearly.
She is really one of those beautiful rare friends that fits perfectly within our family. She always have.
Despite the fact that she is Guatemalan and I am French Canadian (or so I think, It hasn’t been confirmed with the my donor), we are always asked if we’re sisters.
Maybe it’s in the attitudes. Or maybe it is in the fact that we try to spend holidays together. It’s been great to have met her my freshman year of college, at a swim meet, talking at McDonald’s and bonding over our love of Appletini’s (the “in-drink” of the moment for New Yorkers) to being big grown-ups with homes, families, and businesses.
It’s been great being with eachother as we’ve evolved into woman. You can check her out. She’s on blogger to. See www.
What a great name is that? Kudos for coolness Yanellie and Chris. I do have to say that they are one hip couple.
I miss you guys all ready.
Now, the plan for today was to relax, get back to get into the grove of life, pick up the household, and tie up some loose ends in some projects.
No such luck. As usual, I’m just going with the flow, enjoying the ride of the tide.
Poor Xander threw up in the middle of the night on Saturday.
It turns out my gastroenteritis was probably not solely from McDonalds and a binge on too fatty food. It was probably a virus that has been ravaging the local school systems.
Xander now has it. It starts with vomiting and an upset tummy then progresses to diarrhea, which he got over yesterday with the help of immodium.
But since this is our life we are talking about, and it can never be as simple as just a little virus hanging around the house, when X woke up this morning he was complaining about a sore throat.
He doesn’t have a fever, but upon inspection his tonsils are swollen and there are some tell-tale white patches hiding far in the back.
He’s not bounding around the house asking to go outside and jump on the trampoline or even low key activities that he loves like counting his change and doing his spiderman math books. He is snuggling, comfortably, on the couch with me, still in his pajamas, watching tv and playing matching games on his DS, QUIETLY!
He definitely doesn’t feel well. This is not my child. He is also doing something very unxanderlike. He is sitting still.
He has an appointment to be checked at 10:40. Thankfully, the surgery is all ready planned to have his tonsils removed due to these frequent strep infections.
On June 9, 2009 he’ll be undergoing a tonsillectomy as well as having another set of tubes placed in his ears since an effusion (liquid behind his eardrum) in his right ear has been keeping him from hearing properly.
This has been caused by frequent ear infections, which without tubes and frequent support, would go on until he is 8-12 years old when the muscle in the ear matures enough to change the angle of the ear canal so it can drain that pesky fluid itself.
Except, there is a lot of learning to be done between 2 yers old, when these inconveniences started and twelve when the anatomy may just finally decide to fix itself.
Good thing we found dr. Ryder in Charlestown so early on. He has been a fantastic professional to work with. Claremont and Springfield, VT are fortunate to have him as an Ear, Nose, and Throat Doctor.
He also performed my very first cancer biopsy.
Awwww, memories. He had the unfortunate duty of being the messenger of the “C” diagnosis, but that incision he made was beautiful. I do not have any scar remaining and he incision he made was significant.
Dr. Ryder is certainly an artist at what he does. HELLO, of course he is, I trust him with my son and a knife to my neck.
So those are the plans for the day, just to maintain the status quo and get my baby healthy! Get us all mostly healthy!


Shannon said...

Hi Hillary, thinking of you, hope you are doing well!! xoxoxoxoxoxo

Better Linving Enterprises said...

We miss you too......praying that chris will be working from home and we can live closer to you... ;)
I was thinking about doing an entry on 5eagles :)