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, January 30, 2009

Tale of yesterday

"We do the best we can with the information we have at the time, and that is the best we can do." -Dr. A D-F



Yesterday was another adventure. I was very excited. I woke up drank my coffee, ate my cheerios, showered, got dressed, got Xander good to go and even put on make-up for once all with ample time to make it to the hospital, or so I thought.
Yesterday with everybody hiding in their house due to the snow lured me into a false sense of security about how long it would take to drive into Dana Farber for a 9 am massage.
Weds. It took about 20 minutes. Yesterday, it took an hour and a half!
How do you think I was taking THAT riding in the car?

I was okay for the first hour, then when I realized I was going to be late for my full body massage, the one thing I’d been looking forward to, probably the only thing that was going to get me to relax at all, all hell broke loose!
Almost everybody on the road was an ass, and how dare they get in my way (Honestly, they did need some driving lessons). A jeep pulled out in front of us only to go 30 in a 50. Just imagine the sign language I sent to that woman. Then an elderly gentleman driving another sick patient to DF had to get in front of us and stay pause at the green light and take each turn veeerrrryyyy cautiously.
I thought I might need to hop out and commandeer the car for my sanity. If not, at the very least, the man needed driving lessons.
I finally jumped out of the car and charged the hospital from ½ a block away.
By the time I ran to the cashiers to pay for my services and some employee was in the front of the line, just taking her time, replacing her lost T pass, etc.,etc.,etc., I burst out crying.
There goes that make-up job I was so excited about.
Everything was just too much. I needed to relax and everything was in my way. Mother f*****.
The woman behind the counter caught me crying, and the employee got out of my way, which was very nice and understanding of them. They didn’t ask what the tears were about, but since I look all of 18 years old and I’m crying in a cancer center, I’m pretty cure they could wager a good guess.
I got dressed all pretty just to keep myself looking good, feeling good, and kept composed too.
Didn’t work.
However, the massage did.
The masseuse extended the hour so even though I didn’t get in until 9:20, she worked on me until 10:15. Bless her soul.
There was a point when I was told my doctor needed to okay the treatment, at which point my mind started muttering, “If Alyea knows I have an appointment with him at 10:45 and if he knows what is good for him he will okay this.”
He doesn’t want me coming into his office a big frustrated, emotional mess anymore than I want to put a smack down on his ass because I’m pissed at the entire world.
The massage did the trick, and then I ran into one of the cutest transplant patients ever in the waiting room, which I AGAIN didn’t really get to talk to since I was being shuffled from blood draw to vital signs to exam room.
I did get her number though, so now I can call. I really want to talk to her.
Alyea came in on time, which should have shifted my mood. We discussed getting me a psychiatrist to assist in prescribing my psychotropic drugs. Those medications are nasty little buggers that interact with everything.
Also, I am feeling a little crazy. Who wouldn’t be in my situation. I’m integrating back into society and I’m checking my back like I’m at war. People step up to touch me and I step back, making it clear my personally space begins about 5 ft away.
I eyeball plants with their dirt and fertilizer like a slow moving enemy just waiting to send fungus or bacterial cells into my body.
The world is a scary place. I now understand why cancer survivors sometimes become agoraphobic (scared of everything and refuse to leave their homes).
I’m sure I just lamented Doc’s idea when he stated I “really needed a partner in my care,” and I burst out crying.
I do need a partner in my care. I do need someone who is as invested in my health as I am and is willing to learn all I have to and assist me when I’m overwhelmed, sick and unable.
The unfortunate truth about that is the person who I thought was going to be my partner in this does not want the role.
So I started crying.
Then I stopped, quickly, of course, because big girls don’t cry.
Alyea did manage to make me feel reassured somehow. He stated Pat, the transplant nurse, had heard of the German doctor I was considering seeing and that Pat knew of several other patients who had taken that route before.
No word on what the outcomes were of those patients though. I didn’t ask. I didn’t want to know. No reason to further dampen the bleak outlook for the day.
By the end of our appointment I did want to jump up and give him a big hug for appearing like he genuinely cared, but my mother had told me I was too hard on him so I held back.
Had she not made me feel guilty about spewing some of my man hating mood ate him, I may have jumped up and strong armed him into a hug, because I certainly needed one. Maybe he did too.
Anyway, I left for Heather’s to get my afternoon nap before X, mom, and I went out on the town to explore Natick.
X has taken a liking to the bigs. He’s a really great traveler. I’m staying for the rest of the day and making my residency here official. It’s time. I’ve been thinking about joining the realms since May.
I’m now a Red Sox fan, I may as well be a Massachusetts resident too. I do live her half the time. I have a bank account and mail sent to the condo. I’m starting to feel all warm and cozy here. I’ll wait and see how this progresses.
Please remember I’m being candid with you, I am not failing and my feelings yesterday do not represent how I’m going to feel forever. I hope I’m just experiencing a “normal” reaction to all the stressors in my life. Once these resolve, okay at least for the most part, hopefully I’ll be back to my cheerful self.
For now, I’ve said it once, I’ll say it again. I need your love and support. All the great comments are getting me through. It’s reminding me that despite all that is difficult in my life, maybe I’m still important and can still make a difference. Show some love.

10 comments:

brynn said...

I'm sorry you had a bad day yesterday. I am glad the massage helped. I think you should do that weekly. It's amazing how well they help to make a whole self feel better.
I will be thinking about you and sending you my positive thoughts.
Have a good day! :)

Anonymous said...

Mornin' Hill ... I wish I was there to give you a big hug ... I do continue hoping you will find ways to be a little easier on yourself. What you are experiencing is (in my limited experience), normal. What isn't normal (in my opinion), is the way you are handling it. You continue to show amazing strength, dignity, courage & maturity. I don't know how you do it, but you continue to impress me with how you take on so much, yet you still take the time to share your wisdom in the hopes of teaching those of us in your orbit & those who read your blog, about the challenges you face.

You're the greatest Hillary ... you really are.

I'm glad the massage went well ... & while I understand why you might think of becoming a MA resident (NOT), I do expect you back in NH. We at least know how to drive up here. ;o)

Stay strong sweetie ... but never, ever feel like there is anything wrong with leaning on someone else when you have a bad day ... you have a strong & loyal group of people following you who are ready ... willing ... & able to be there if & when you need us!!

Hope ya'll have a wonderful day. The sun rising over the ocean suggests that it might be a nice one, but chilly.

F

PS: I'll probably get in trouble for this with the "She Bear" ... but next time, give the good Dr. a hug. I'm guessing that he deserves it.

Anonymous said...

Sending warm Georgia hugs...
Carol

emjay. said...

aw hon,

It figures, you're in MA now that I'm across the country! Just goes to show you how important the support of your family is during tough times! I got you're message and will call you soon. Keep taking care of you!
Hugs
m

Bekah said...

Dearest Hillary,

I'm sitting at Dana Farber, thinking of you... as I await some of my own tests..

Anyway! I'm so pleased you got your massage in, and that X is such a good traveler. And that MOM was with you yesterday.

Being close to family is important. And, even being our age -- I still call my mother, in Philly, and tell her to come for weekends when I know I can't handle it all.

Also, I love you being so candid. Especially talking about the road rage here in the Bean, our drivers are CRAZY.

Lastly... I wanted to give YOU a huge hug, when you your doc talked about having a partner interested in your care. This is all, hard work, goin' at it alone.

Just know, you have an army of support -- I know most days, that doesn't make a difference.

But tons of people are sending positive energy to you, and your beautiful fro -- which by the way, just let it grow a bit... it'll get better, I promise.

Sending you an e-mail soon,

B

Anonymous said...

Hillary, I'm glad the massage worked for you and you were able to get the full deal! Don't be so hard on yourself! Most people would not be able to handle half of what you are going through to say nothing of the grace you display on a daily basis. You have more people praying for you, thinking of you and giving you hugs from afar, than you can imagine.

Keep up the great work, and you have lots of people that would do ANYTHING for you.
Eileen

andyson said...

I'm sending all of the support and happy thoughts your way. It sounds like you need them more than I do right now. I am right there with you at this step, and even though we when through different procs, in the end the result is the same. If you need someone to vent frustration at, let me know. I'm growing the fro too. I used to have wavy auburn hair, now it's just black. Very black.

DebA said...

Being a Red Sox fan does have some magic. While I live in Maine I still miss Mass (cannot say that too loud up here). I just dropped in to send a big (((((hug))))) from five feet away of course!

Anonymous said...

Hey, Hillary. We're here for you. Sorry about the bad day - hopefully today with the sunshine, it'll cheer you up. Big hugs are being sent your way. I live in CT and I wholeheartedly agree about MASS drivers - the pits. Not for the faint of heart, traveling to Beantown.

Hang in there, kiddo. Oh and BTW - I like the fro. You have such a pretty face and it frames it so nicely - keep it!

Thanks for your blog, too. You amaze me.

Hugs and lots of sunshine being sent your way.

Nick King said...

Hillary,
Your writing about your bad day reminds me of some of my late wife's writing about what she called her "Dance with ALS". She too wrote about anger (see http://www.livinginlightofdying.com/content/healthy-expressions-anger ) as well as what she called the "Gifts in this Disease".
Perhaps it was different with her because there is no cure for ALS (aka Lou Gehrig's disease) and little money spent on research because it is so rare (only about 5500 cases annually in the US).
Anyway, I created Living in Light of Dying (something we all are doing all of the time whether we want to acknowledge it or not) as a resource for expression, learning and discovering that we need not be alone with whatever feelings emerge from facing a life-threatening illness.
I invite you to check the site out. http://www.livinginlightofdying.com