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, January 12, 2009

Test Anxiety

I’m anxious.
I have been for a couple days now.
This happens around test time.
I used to deny it happened, because I thought it was absurd.
I should be excited. Everybody else is excited. Don’t I want to know?
No, it’s not excitement. It’s anticipation, an anticipation I wait for with my jaw tensed wondering if the information is going to destroy me.
Yes, destroy me. I think every time I get another one of these nasty positive PET scan results a little piece of me goes missing.
But then, I just replace that piece with something else, something more determined, like generating muscle. You have to tear the muscle fibers and have them regenerate themselves to improve your physique.
I just don’t really want to regenerate again.
Dr. G told me this happens. He’s been warning me for years that around test time patients become anxious, and that it is a progressive anxiety leading up to the test.
I never really believed him. I didn’t want to think I was psychologically weak.
But it’s not weakness. It’s human nature.
It’s just like any test that has the capacity to determine your future.
I have some serious test anxiety.
The fear, also, is not only of having a positive result, but wondering what will happen with a cancer free one.
What has happened in the past with my remissions (which have all only lasted three months) is that everybody assumes I’m fine.
The mentality seems to be that with a negative PET my doctor comes into the room, waves his magic wand, and fixes everything.
So untrue. All this means is I’m out of immediate danger. Do you know what happens to people when they feel they are out of immediate danger?
How many of you got sick over the holidays? It’s the same idea. You had some vacation time to rest, your body knew it, and you got sick from all the stress you experience year round.
In remission, people suddenly expect me to go back to being the way I was.
I don’t even remember her, people. It has been too long. I’m now me. Perfectly imperfect.
Also some may think I’ll have my energy level back, not going to happen overnight. It took years to get me here, it is probably going to take years to get me back.
I’m not trying to undermine the significance of today. I’m just trying to protect myself, and everybody else.
Trust me, mass celebration will ensue. It is always a tentative celebration, because I know I’m going to be right back in a similar situation 3 months from now, but only with less support.
I’ve gone through this pattern enough.
It’s like an empty bed in the ICU. It is nice to have one less patient, but you KNOW you can always have to fill that bed with a wreck.
Every time my cancer returns I see my options shrinking. I, again, stop and examine my life, and exactly what I want to do.
I’m hoping some good results today will relieve me of this stress, this sense of urgency I always feel, that whatever I want done needs to be done immediately, without delay.
I’m not so sure it will, but it does represent, hopefully, a great transition, where I can again focus on HEALING not treatment.
This is what I’m going to do with the great results I get later today.
I’m going to get a REALLY BIG GRIN. I’ll put on my Lester jersey and a red sox hat for the FIRST TIME EVER. I’ll call some people and text some others.
Then, tomorrow, I’m going to embark on remedying EVERY SINGLE remaining side effect of my past three years of treatment.
I don’t think treatment is over. I think it’s beginning, but now I get more control. I can start doing things how I want.
I’m going to master survivorship.
I have already started transitioning my lifestyle to include mostly organic products. I’m cooking with more fresh vegetables (and since I’ve been holed up for so long, I now really know how to cook). I’ll add fruits later. For now, it’s fruit juices, all natural, for the anti-oxidants.
I have been exercising daily by doing something I enjoy doing. I think the flaw in most exercise programs is that people do something they dislike. I customized my routine to myself. I’m not sure I’m ready to admit to you all what I do to stay in shape, because I feel a little foolish.
I’ll see my chiropractors tomorrow, and they’ll assist me in detoxing my liver. We all ready have a plan that includes some Hepatrophin (you can see my rationale for taking this at I’ll ask Alyea about the use of my former holistic medications.
Then, on Weds. I’m hanging out with Jill. I’ll get an MRI and put my mind to getting my neurological function back in some order (Ha, get it. I’m going to put my mind to it).
That is as far as I’ve gotten. I’ll keep you updated on all the upcoming GOOD NEWS, and we’ll just see about Red Sox nation.


Anonymous said...

I was browsing blogs when I found yours. I don't know if/ think that I will come back but I wanted to tell you that I love this post.
There are no cancer in my family. There are not major physicall illness in my family. Both sides actually and I have known 4 of my great grand-parents (we die really old).
But my substitute mother has been diagnoticed with a brain tumor in december. I have met people with cancer before but it is the first time it is touching a person I love and care about.
The brain tumor has been removed and she must have gotten the results last week. I am waiting for a good news although I have prepared myself for a bad one. I am ok with myself now because I have realized that I cannot ask her to support me again. If I love her as much as I pretend it is my turn to give her a little support back.
I wish I could do something for you because what you said about getting less support because it seems to be becoming a routine made my heart ache.
I just wanted to tell you that I am sincerely sorry and I wish I could be around just to try to lift you up a little.

brynn said...

I am thinking extra about you today. I know you are not out of the woods yet, but a clean PET scan is a step towards that direction! Good luck at "The Farber" today. LOVE YOU!

Anonymous said...

My thoughts ... in fact, the thougths, best wishes & prayers from a lot of people are with you today Hill. I hope that is of some solace to you. Know that you are important to a lot of people ... you are important to me.

Stay strong & I'll be pulling for good results today.


Anonymous said...

Please let the "what ifs" take care of themselves... things do have a way or working out... and you have created such a fan club that despite how it probably feels right now, you have much warmth and strength and humor being sent to you, I'm sure it will make a positive impact! Keep the faith.

Anonymous said...

You have more people than you can even imagine pulling for you, Hillary!And you'll have as many (if not more) people to continue thinking of you, praying for you and willing to help out in any way possible 3 months from now.

Think good thoughts, I am!