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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Friday, February 13, 2009

Mini me and me

After two and half hours in the car to get to Dana Farber, I jumped out of that door like Seabiscuit running out of the gate, only to stop in my tracks as soon as I got on the curb and STARE at the cutest little mini cancer patient.
She was a mini, and I mean tiny, version of me. She had a cute little mickey mouse mask and a pink bandana. She was wearing her spring coat with a little dress and tights and cute Mary Janes.
And there I was, in my tights, pretty dress, red spring trench coat, and yellow mask resisting the urge to inappropriately run and snuggle the most adorable patient I had ever been.
No, I could not be one of those crazy people. Not today.
I was going to look away.
Mom caught me.
She’s going to think I’m a freaky sick kid snatcher I thought when I met her eyes.
But instead, she smiled, wide and bright. Maybe she thought I looked like the big healthy version of her daughter, while I was thinking her daughter looked like the mini healthy version of me.
Either way, I got the mom “okay” glance to talk to her child like an adoring aunt, or maybe, from her perspective, the “cool” older sister, since she probably gauged that I was about 16 years old like most people.
That is the way to step out, people.
I knew my appointment and day would go okay and I would NOT have a repeat of my appointment extravaganza from two weeks ago (has it been that long all ready?) when I almost had several crying breakdowns from people sneezing my way and irrationally took out my man hating anger on my doctor.
No, not today, it just would not be that way. It was a good day.
And it was okay, except for the little wait I had to endure where I tortured myself with the latest issue of lucky, which is more like a catalogue showing me the cute upcoming styles for spring that I will not be buying, than a magazine.
Lucky me, I’m frugal and vogue. I know how to get those looks. They’re called high end thrift shops, vintage shops, second hand stores or garage sales. The lace, the embroidery, the flowy hippie look, it has all been around before. Those fabulous blazers that you can pair them with for that I-am-trendy-young-cute-and-yet-so-professional look, you can get those second hand or on clearance too.
Can’t stomach the second hand thing even if you have a great dry cleaner or know how to bleach. Score the clearance racks.
My favorite tweed blazer with suede elbows was 5 cents. The two times I’ve had it dry cleaned has cost more. For 5 cents I can go out with the ladies to a place with no coat check and ditch it.
How about that for wild abandon? FYI- Tequila does make my clothes fall off. I should really come with a warning, something tattooed that maybe says “Do not add alcohol.”
Anyway, that aside, my vitals and my labs, again look fabulous. From those, I appear to be in perfect working order.
My lungs are still snap, crackling and popping from my weekend battle with pneumonia and my stomach was still a little touchy from the gastroenteritis (did I tell you I had both?), but otherwise, well hydrated with, clearly, a semi-functioning immune system that just needed the aid of some antibiotics.
I did spend my day hand glued to my water bottle. Can I hear some words of encouragement about how GREAT it is that I’m sticking to the 51 oz. of fluid per day goal? This is a hard on for me. I’ve never before been one to drink A LOT unless the beverage had alcohol, then watch out.
But those days are over, because I’m on a health kick, and that Hillary, that girl, being shelved for a bit.
And so the good stuff went on, I booked TWO appointments at the Zakim Center for acupuncture, which I’ve really been wanting to try but hadn’t had the luck to ever get an appointment.
Guess what. Now I do have that luck. My luck has changed. I’m now on the good side of it. It was time. Not just because I deserve a break, but because science says so. Statistically speaking, as many bad things that happen to me should not ALL be happening to me. It’s the law of averages. It’s science. Bad times should be over.
I also found FREE BOOKS for Xander at the Blum Center through the Light One Candle Campaign, which provides reading materials to the children of cancer patients to encourage a continued bond and relationship through reading together.
I had never heard of this cause, but I like it.
Then, I found a flier advertising DANCE CLASSES that facilitate lymphatic drainage. I dance. I love to dance. I’m all about my hip-hop to keep me in shape, but knowing there is the possibility that I could dance and coax my lymphatic system into draining the nasty defunct cells I have instead of letting them accumulate into tumors, now that is a concept I’m in love with.
Melissa said a cautious “No” to the next two medications I suggested in my experimental regimen, which contain viruses (such as CMV, EBC, herpes simplex and zoster), and I agreed. I don’t think I’m satisfactorily educated on why I need these. So they are being postponed. Next up I’m bringing in Thymex to recruit the production of healthy cells.
A PET scan is tentatively scheduled for April. Before it was set for June, for no other reason than Alyea said so. Melissa and I discussed me taking a one time Xanax dose, which interferes with the uptake of the metabolite used into brown fats which may cause a false positive reading. Dartmouth does this as part of their PET protocol. We’re instituting this so we can be ABSOLUTELY SURE what they see on the scan is either brown fat, a viral inflammatory pattern, or cancer.
Hopefully, this will verify whether I am in remission or not and guide my course of treatment. I’ll wait until after this test to book any trips to Germany or anywhere for more treatment.
Maybe diet, supplements, faith, and prayer are all I need. Strike that. I’m pretty sure faith and prayer are all I need, but I’m not being stupid here, God helps those who helps themselves.
Finally, I am officially weaning down on my prograf. I’m now a 0.5 mg girl. Right in the nick of time too, since we’re doing are taxes and we have paid $1200 in co-pays to medco alone. I can’t wait to finish our taxes and let everybody know exactly how much health care can cost, even with the insurance.
I’m not sure how I’ll respond, but I’m getting the feeling it’s going to be a start-a-riot-over-the-injustice number, or at the very least, scream and holler and push harder to start a revolution to enforce the granting of our civil right to health care under that little statement in the constitution that states we have a right to “LIFE, liberty, and the pursuit of happiness” number.
I’ll tell you right now, I’m not feeling supported in the life department by our government and I’m certainly NOT pursuing any happiness since this is so intricately tied to my HEALTH (it’s hard to enjoy yourself when you can’t breathe, I’m just saying).
I’ll let you know when the numbers are in.
Have a happy Valentine’s weekend.


Anonymous said...

Hey Hillary....Sorry I'm not from anyplace exotic...but you have to know, girl, that you can put anything on and flash that winning smile...and you look absolutely fabulous...even on bad days you are gorgeous. It's your spunk and spirit that come through.. Also, CONGRATULATIONS on being published......WOW!!! And, man, did she peg you or what??? From lowly Massachusetts...a very dear friend of Frank Easton's...I read your blog faithfully....YOU ARE AWESOME!!!!!

Valerie said...

Hillary- LOVE your blog. You rock. And are hot. I'm not trying to be weird, you're just gorgeous! Keep on keeping on! xoxo

Anonymous said...

I love it Hill ... can't believe you didn't mention your review today when we talked!! You ROCK girl!! And as Ellie (Anonymous post above) pointed ... she did peg you!!

I'm proud of your spunk & character ... your sense of humor ... your honesty & candor ... & your style.

Also love the pictures ... you really sparkle!!

Hope you have a great Valentine's Day ... hugs to X ... tell him that I can hear the frogs under the ice, trembling at the mere thought of the great frog hunter coming up for a visit!!

Stay strong ...


Sig said...

Girl, you. look. stunning.
Way to go on your lucky outlook.
I got an interesting giveaway on my blog on Monday, you have to enter!

DebA said...

What a fab smile and attitude. You are wonderful and reading your blog has been life changing. Keep it up girl and know that you are part of a large circle of love and caring.