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, December 29, 2008

Treatment Hillary Style

Sorry for the delay. I am okay. HERE I AM AGAIN!
I spent the day at Dana Farber today with Brynn and Nicole, having some bonding girl time.
Being me, I decided a LONG time ago that if I had to get treated, if I was choosing to FIGHT, FIGHT, and FIGHT SOME MORE, and if I was OBLIGATED to be in the waiting area, infusion room, doctor’s office, etc., I might as well have a good time while I was there.
This is how treatment is going to go down Hillary style.
If I can’t change my situation, I will change my attitude; and thereby, I will positively affect the people and my surroundings (See Emotional Contagion by Elaine Hatfield and Cacioppo).
Cancer and illness does not always have to be all fears and tears.
If you have to be treated, you have a couple options: you can pout , cry, get angry, and complain, you can grin and bear it, or you can roll with the punches and take it like a woman (or man).
The employees at your treatment center are PEOPLE, why not chat them up and treat them like friends?
It has been proven expressing your anger and venting unnecessarily is NOT EFFECTIVE in making yourself feel better. If anything, it makes you and the people in your surrounds feel worse. Just like happiness can be contagious, so can’t tension, anxiety, sadness, and anger. The waiting, infusion rooms, and offices are so full of these emotions I could just about karate chop through them with my hand.
But I don’t, I laugh, smile, and joke instead. I relax and spread the cheer. We who are facing our mortality are vulnerable. We are scared, anxious, or angry, and there is no manual telling us how to behave.
I won’t be going down or out like that. I won’t allow what may be the last years, months, weeks, days, or minutes of my life to be plagued with sadness and fear.
That I can change. I can always change me.
This idea was based in part on the serenity prayer. If you don’t know what this is, it goes like this:
God grant me the serenity to accept the things I cannot change; courage to change the things I can;and wisdom to know the difference. --Reinhold Niebuhr
You would be surprised how difficult it is for type A control freak (now reformed, thank you, through what I like to call “cancer diversion therapy”).
I cannot change my situation. I cannot control my disease. I cannot change the progression of my cancer or the course of necessary treatment.
I can do the best I can with the knowledge I have, the rest is not up to me.

As far as my health, I look as good as I could. My labs are all fabulous. Previously, my eosonophils (if you don’t know just go with it) were elevated, which is a sign of graft v. host disease, but today, guess who has a normal eosinophil count?
My sister.
Noooo, just kidding, that would be me.
My magnesium is low (1.6 when 1.8 is normal). I’ll confess, this is because I keep on choking on those pills and spitting them out.
My BUN is high, which means I have to hit the bottle (as in water) a little bit more.
I have appointments. I’m scheduled for a PET SCAN on Jan. 12 at 2:30. I need to show up by 1pm. After this I see Alyea, and if the scan is clean, I WILL LEAVE WEARING A RED SOX HAT.
Yes, I said it. Yes, I went there. I’ll smile and post the picture too. A negative scan will put me in remission!
I won’t be celebrating to loudly though, restrictions and caution need to extend for 6 months post transplant and I have had many negative PET scans, but never a remission that has remained more than 3 months. I’m just warning you upfront.
I was told visitors need to be limited to “a couple.”
I sounded a little like former Pres. Clinton when I asked what, exactly, a couple was. FYI, it is two or three at a time, not because I didn’t know, but now you’ll hold me to it.
I also have an appointment with Melissa on Jan 6 at 11am (happy new year to me) and an appointment on the 28th with a dermatologist (have to keep my skin looking as good as it does).
That’s a wrap for my immediate health update.

5 comments:

Kara said...

You look great! Im praying for that clean PET and that pic of a red sox hat! lol Kara

Anonymous said...

Once in awhile I get asked, "Are you always this happy?" to which I reply, "Well, if I'm going to be alive, I figure I might as well be happy about it!" I totally agree that facing the world with a bright smile and an open personality makes it a better place, for you and everyone around you. Imagine the world if everyone had that attitude!

Glad to hear that things are on an even keel. Keep it up!

Alanna

Brynn said...

So Nicole and I ventured down with Hillary to Dana Farber yesterday. When we walked into the waiting room and sat down there was a somber feeling. I couldn't imagine going through everything that people who have cancer go through. I was also astonished at how many people there were in the waiting room. I have to say that I wasn't expecting to see the 50 to 75 people waiting there. That really opened my eyes to how many people are effected by cancer. It was certainly a buzzing place.

We were sitting waiting for Hillary to get called and she came over after checking in. There was a man who was only a few weeks into his transplant and another woman who was a little anxious and apprehensive. I could tell she was nervous for what was to come. Hillary came over to sit with us and the mood immeadiately lightened. She struck up conversation with the man and the woman on the other side of us started to listen. Soon the woman and her daugher were joined into the conversation. And the conversation turned to Hillary sharing her story and people asking her questions. There was also the questions about "what do you do" which helped people to see that talking about their cancer and their treatment is okay. That was the first time she gave out her card.

We got up to go meet some of her caretakers. When we got back we sat in a different spot to chat with other people. There was a man and his wife who looked scared and weren't sure what life was going to bring them. In the midst of the conversation she said something awesome..."there aren't any bad days, just great days." How great is that quote! After that converstaion ended the man stood up and gave Hillary a hug.

I just wanted to share with everyone what I saw. I know everyone knows the effect Hillary has on people. She is this bright ray of sunshine on a cloudy day. I was so inspired by her. I told her that she was doing something great and I didn't even think she realized it. If you get the chance to see her do her thing, don't take it for granted...it's wonderful.

If you could take a lesson from her...be comfortable with yourself, live everyday to its fullest, show kindness and understanding.

Thank you for sharing that experience with me Hil! :)

ti said...

Hi Hillary,
It was great reading your posts! Thanks for sharing such a positive attitude! My fiance just went through a stem cell transplant at DF as well (you guys must have just missed each other).. And it is amazing how somber the waiting room can be. I hope that someday we'll have appts on the same day.
Good luck on the 12th! I'll be looking for a girl with a Sox cap & a smile the next time we're there!

Dani said...

You are such an amazing person, and I'm so glad that you can touch people the way you do.. I look forward to seeing you and can't wait to catch up some more. By the way you look amazing