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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Wednesday, September 16, 2009

I am beautiful. . .

On the inside.

Yeah, I said it.

My insides look good thanks to a PET scan taken last Friday.

It looks like the tumors have dissipated since the start of my chemotherapy regimen.

For all of you who would have liked to see the visually, the actually scan pictures, and are extremely disappointed I don't have them, feel free to direct your rage to my perfectionist hematologist who refuses to show the scans.

I think showing in imperfect scan, in his world, is like passing in incomplete work, so I just let it go, even though it would be so much cooler to show!

The good thing about my cancer is that, though it comes on quickly, aggressively, and mutates to be resistant to treatment, it goes away very quickly with a new chemotherapy.

The fact that I am cancerless is great news.

It’s great news I have heard before.

It’s great news that is followed by the fact I need more treatment.

I can’t just stop and say “hey, fabulous, good bye cancer. What we did worked!”

No, no, no, not that simple, because due to my history, it is pretty clear it has only worked for now.

Eventually, the tumors will likely come back.

Sorry to be a buzz kill, but I am at an impasse

This occurs everytime I am declared “clean” or “in remission.”

Everybody celebrates. They think it’s the end of my battle.

It is the end of a battle, but I still haven’t won the war.

People start thinking Life is good and I can start recovering to be what I have been wanting to be and do what I have been wanting to do.

Not the case with me.

Not even a little bit.

The chemotherapy y is working (HOORAY!!). That means I could stay on it for another 2 or 3 months and be relatively miserable from all the side effects, comfortable AT HOME.

The other option is I could use one more round (or month) of treatment and pray the spot in my lung has gone away.

No, I haven’t mentioned the spot.

The damn spot that needs to get out, that has caused me so many problems.

It is the spot that was originally thought to be pneumonia or just inflammation. Who knew really? It was up in the air and for grabs by all my diagnosticians.

Turns out, it is probably inflammation. This is probably the worst option, since the problem it is most similar to caused complete respiratory failure and for all my family and friends to be called in to say their last good byes.

Yes, I have a spot like THAT lurking in my lung, causing me shortness of breath.


And people wonder why I kick and scream, turning into an outright bitch when I can’t reach a professional to ease my pain or improve my ability to breath.

If it’s inflammation than I’ll fight inflammation.

I’ll chug some berberis and eat pastas and rices with all my favorite anti-inflammatory herbs since even a small dose of motrin is off the table now that my platelets were low yesterday (36) and I’ve started taking Coumadin, just for a short time, while the kinks (hehe, that’s a dork joke) in my line get worked out.

Hopefully this should fend off any clotting disasters that drag me all over kingdom come for treatment.

Ironically, the Coumadin is set to start working about 26 hours after I start it, just in time to no longer need my medi-port for vancon infusion.

My goal for the week is to learn to love my mediport.

It’s a part of me know. We’re going to have a long, fabulous relationship.

I certainly have never had a patient whose mediport was screwed up so badly that she was left oozing blood from the simple surgery for days until a nurse finally threw a hissy fit.

It was to late for poor patient though, she died from a hospital acquired infection due to the frequent dressing changes to control bleeding from her port site.

I have to forget all those people and patients from the past.

Is it any wonder I’m scared to death.

Ignorance is bliss. I like to pretend I’m ignorant.

Specifically, I’m going to train myself to be submissive to my care team. They are perfect. They are perfect. They are perfect. Maybe if I repeat it enough I won’t know what I do. . . .

All this PET means, is that I still have options (hey, I’ll take it!) and the options are to stay on this treatment for a while to enjoy my time with my family or rush to a donor lymphocyte infusion, which I don’t know much about.

What I do know is that it requires trips to Boston and I will be under Dana Farber’s loving care when I enter into this territory.

I am on a bit of a timeline, X wants treatments done by Christmas. He’s been asking God and Santa, the universe’s two biggest authorities to a six year old.

One more treatment cycle would put me mid October, two more would put me mid-November. If I take the latter I’ll be in active treatment around Christmas time.

If I take the former then I’ll be easing up around Christmas, but I run the risk that if DLI doesn’t work I may have one month less with my family.

That certainly makes decision making complicated.

What I have decided is, as much as I want to proceed with my big ideas on how to save the world and health care reform, I probably won’t.

I have been looking for a 501(C) to hand the idea off to or anybody who would like to administrate it other than me.

I just don’t have the energy to put the TLC into a venture like this.

I have my favorite venture sitting right next to me playing DS and decompressing after school.

I don’t need anymore stress. I don’t want to be dragged in another direction. I'm going to hang out, write my postings and my books (yes, I said it, you didn't think I was giving up all the goods did you?)

With this being said, I’m more likely to move to DLI mid-October.

This may have treatment relatively over by Christmas for Xander’s wish.

I do think God is listening to us, always, watching us. We will always have what we need to survive. It will be provided if I continue to follow my heart and the directions of my dreams.

Thank you so much to those of you who help us.

Keep praying for our Christmas miracle.


Valerie said...

Love & support to you, Hil... XO

Anonymous said...

will continue to pray for that Christmas Miracle for all of you! This IS positive news! You Are an Amazing Person Hillary, truly truly an inspiration and you continue to show us all what true happiness is and what is most important (our families and TRUE friends)and how precious every single day is. Thank You <3

linda keenan said...

you are beautiful because you express yourself with honesty and fearlessness!

Paul H said...

We too will make appeals to the higher powers (God and Santa) for you. Keep up the fight! You and your family are in our thoughts.

Anonymous said...

We were very happy to hear your news when Vic called us the other night. About your passing off of ideas to someone who can run with them - have you thought about contacting the Robert Wood Johnson Foundation? Just a thought. Let me know.
Laura Z.

Jennie said...

I can't say it any better than anonymous 9/16 did. We're all pulling for your Christmas miracle.