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, November 13, 2009

I spent yesterday sleeping and wondering if I’d ever get my energy back again.

Of course, low and behold, I did. . . . . . at 3 am this morning.

I was able to get up shower, dress (which is not something I do everyday) right alongside Xander who, as he’s tying his shoes to go to school, starts to gag like he’s going to throw up.

Of course, on one of the few days I drag myself out of bed with energy to shower and dress my son would be sick. Happens all the time.

I’m calling my sister since we were supposed to be spending a fun filled weekend with her in the family in Natick Mass. I think those plans may be cancered, like all my plans for the fall were, but that doesn't stop me from making them. SOMETIME, I'm going to have a good time again.

Our nephew, Preston, is a month old and neither X or Jon have met him yet.

I don’t know if now would be prime time to see them since several people were sent home with fevers from Xander’s school yesterday with suspicions of swine flu.

Jon and I are getting our shots today, hopefully in time to protect us if our son is a carrier.

I do think that if I contracted the swine flu it would kill me with my lungs in the condition they are, but that doesn’t stop other healthy defeatists from telling me it’s too late in the season to get the vaccine since it won’t be back around again until the summer. All I hear from this is you’re screwed.

With my luck, those comments are like cursing me with the illness.

Let’s pray it didn’t.

That comment ranks right up with the man who upon having my husband tell him I was going to Germany to see the same Doctor as Farrah Fawcette said, “You know she’s going to die, right?”

I know some of you have your jaws wide open in shock that people would say this, but J and I had a good hearty laugh over that one.

People are uncomfortable addressing illness, and I just try to remember that they want to say they right things, that they’re trying to say the right things, even if what comes out of their mouth is stomping on our hope.

As for Germany, it’s still in the back of our minds, except that with Reliance Standard cutting my disability payment it’s now, officially unaffordable.

I do think that if this companies’ action is a major cause of my inability to seek extended life saving treatment that I’ll throw a Hillary-fit like no one has ever seen before, and you all know I can throw some good ones.

Today, I’m anxiously awaiting the results of my PET scan.

I didn’t want my PET scan.

I have no contingency plan if it’s positive.

I was on “Plan Y,” remember?

Why would I want a diagnostic test telling me I’m screwed into more treatments? I’ve barely recovered from the last.

But Dear Doc is going to be out of the office for two weeks which means I wouldn’t have another scan for three weeks, which was fine by me, but not by him.

He’s flying over to Vienna for a conference on the latest, greatest treatments for MDS (myelodysplastic syndrome), which is a blood cancer caused by chemotherapies.

Yes, folks, chemotherapy can cure and cause cancer.

I think because he is hauling ass halfway across the world to learn about innovative methods of treatment for blood disorders that he can never again pick on me for the “alternatives” I use, which are really just treatments from outside the United States.

If he doesn’t bring me back some good treatments, I vote for a pretty present.

Dr. G did have a little talk about whether he would be calling me with the results or not and guess who won. . . . he did.

I’m going to hear them good or bad.

Since I’m going to be forced to hear the results I want to hear them NOW!

I didn’t get a phone call yesterday, which to me means it is bad and I was getting a day or emotional reprieve.

Jon took it as a sign Marc isn’t worried so he didn’t feel he needed to get to me right away.

The truth is probably that he was at a satellite clinic and didn’t even think about it yesterday.

I’m resisting the urge to stalk him for my results.

The good news is that the little boy with Hodgkin's who fled treatment with his mom last year is now cancer free! AJ is recovering well from her recent bone marrow transplant. She's only 7 days out and trying to bust out of the hospital, unfortunately where she is going to break out to is still up in the air.

1 comment:

Anonymous said...

Ok, Hillary please do tell us the secret for getting the H1N1 shot for yourself. I've been trying to get one at Cheshire med center. Even though I am at high risk due to cancer and chemo I'm still not on their approved list of people who qualify? Where are you getting this shot?