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, October 31, 2008

I'M IN LOVE

I’m in love. . . . . with my new necklace from Tiffany’s.
I didn’t really believe pretty things could make me this happy.
I’ve never really been a shallow girl, but damn, this is really nice.
I think every woman needs a necklace from Tiffany’s, in the blue box with white ribbon and sealed in the suede satchel.
I’ve bought Tiffany’s before, it came with the satchel, but I don’t think my weakness for designer goods that magically appear in my pocket from an alley on Canal really count.
I keep telling myself that these things are WRONG, and I am going to stop immediately. I’m weak, and apparently, I’m okay with walking a moral line.
It is not illegal to buy counterfeit goods. It is illegal to sell them. Just in case anybody was interested.
I first saw this on the neck of a radiologist while I was getting an ultrasound.
Yes, this is what patients stare at while being poked and prodded. She gets to look at the inner workings of my pelvis, and I stare at her jewelry, analyze her face and those of her doclings. I stare at the ceilng or the art on the wall. I analyze the layout of the room and reorganize it to make movement more efficient. Most of the time I sleep.
It depends on my mood.
It was love at first site. It’s a silver Elsa Peretti L that looks like a fancy cancer ribbon. She felt as strongly about how fabulous her necklace was as I did.
Now, I feel more like a survivor and less like a patient. I now have “survivor” over my tattoos distracting from my scars. My line is gone.
While Im gushing about my new fashion accessory, I'm wondering where my new cancer girl is. She's done with her transplant. She works in fashion in Boston and has a beautiful accent. She looks like me" the hair, the glasses, & the outfit." Where are you? I'm feeling a little more social. I think I may be be giving her a call.
To take the day up a notch and make it even better, I got to see X at his first Halloween school parade today! He was a ninja turtle.
I’ve rested most the day, so I’ll be able to go out with him tonight. I’ll sit in the car and watch the kids go by.
I’m hoping he’s still young enough that we can drag him to our friends houses for pictures, but I think he’s at the point where he’s going to run around the neighborhood like a maniac and try to break into the chocolate immediately.
I’m happy tomorrow is a Saturday.
I’m actually getting into the Halloween mood. I generally stay away from scary movies. They scare me a little too much. The people who create them, specifically, scare me. It’s difficult to take your mind to a place as dark and specific as they go and come back.
I also think themes in society present themselves first in horror movies. Have you ever heard of The Eye or Awake? I haven’t seen them, but I didn’t even like the previews.
I think we may go rent something scary on later.
One of my biggest fears is serial killers. This is probably a common fear among people, otherwise my lifelong fears (okay since 12) have been, hold your breath, 1. HIV/AIDs 2. Blood Cancers, specifically leukemia, and C. MDS (myelodysplastic syndrome), which occurs as a side effect of blood cancer treatment.
The logic behind these fears is that these diseases kill young people for no reason, and if #2 doesn’t get you the first time around, #3 will get you in 20 years.
If you think I’m lying, you can call my sister. I was a weird little kid. While other students were drawing monsters in their closets, I was drawing cells and double helixes.
So, back to my gorgeous necklace. Holler to the man who thought I deserved a little cheering up. It worked.
Life is good.
I’ve been having some minor problems, with aches and pains and low grade fevers with chills and sweats.
I know you’re sitting there thinking, “oh no, did she really just say that. FEVERS!”
Yes, I did. They are low grade with no known cause. Nobody is too worried. I have discussed it with my Doctor. It has not crossed the 100.5 line that suddenly makes it a possible dangerous bacterial infection.
I’m hoping it doesn’t lay me up in the hospital for a couple days.
I have the nagging thought in the back of my head that maybe it’s the “C word.”
I’m not talking about the dirty four letter one, I’m talking about the C word that would make all my previous suffering completely worthless.
This is normal suffering patient paranoia. I DO NOT HAVE CANCER.
I wonder what would happen if I did?
Let’s play the what if game?
Patients like me can have three transplants. There are endless possibilities for trial drugs.
In my first trial, I sat next to an 83 year old man that had been in clinical trials for 6 years.
Six years is a long time. I wished he would come to terms with whatever guilt he was carrying, and allow himself to die. I have a great sadness for this man.
I can’t say how far I would take searching for a cure. My guess is until I up an die one day from a side effect that cannot be treated in time.
I vote septicemia.
Either way, I will not be getting a PET scan for my paranoia. I’ll live in my personal horror movie, thank you.
My insurance company, Bless their hearts, have outright denied my last scan.
I haven’t tallied the denials, but every PET scan I have ever received has been approved and denied. Eventually, as in probably after my next scan three months from my transplant date or Jan. 9, these denials would have cost me more than the remaining total on my mortgage. We’re talking $120,000-140,000.
No big deal. No stress at all.
Happy Halloween people. Go enjoy the evening. Pray for me tomorrow. St. Pergotamine is the patron Saint of Cancer if anybody was wondering who to it up on my behalf.

1 comment:

deb said...

hey hill,so glad you're home and getting stronger. you're my girl so keep on keeping on love ya deb