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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Tuesday, August 23, 2011

Patient Escape in NYC

 It’s not fair.
Life is totally unequivocally unfair and I'm at the epi-center of an abyss of unfairness. 
My treatment at NYU last Thurs. fell together perfectly. We made plans to drive to the Affinia Shellbourne Hotel Weds., as arranged by Dr. O’Conor’s team, who I love.
We get there for a fun fine evening when @ 60 st. on the FDR our tire goes flat. We easily get waved to the side where magically there is a break down inlet so we don’t block traffic.
 We’re flagged over by a group of men in their late 20s who proceed to hop out and start fixing our tire like a road crew for the Indie 500. I kept cheering and singing the “Pep Boys” song in the back (you know the commercial.
 We were on our way to the Affinia in 20 min and only -$40.
We thought we’d dodged a bullet, but no, not me, not Murphy.
At the hotel their front parking spot magically opened up, and we snagged it knowing the donut still needed to be changed.
That was one hell of a fiasco.
Come to find out: AAA does not do tires.
I thought tires were their thing, but it’s not. According to several AAA agencies, changing on tire to another or a donut using what you have is all they do.
They offer Nothing Beyond That. They will not patch a tire. They won't bring a can of fix-a-flat to fill the obvious puncture caused by a nail. They won’t put a resealed tire back on the car and let you ride it around the block to be assured.
 Hard lesson learned: stick to your dealer’s insurance. AAA offers little but discounts.
 The subaru insurance connected us with a mechanic who came to our car, put the new tire on right in our parking spot (or so we thought).
We went on our unmerry way, our wallet $305 lighter, a reasonable cost for a brand new tire changed in a NYC parking spot.
 But ruining the bonding evening I had planned with my mom wasn’t enough, we were bamboozled, taken advantage of, Rumplestilskin plugged our tire and put it back on ($30 job) for $305. There was no new tire involved.
Ouch, not to dwell.
 But I cried. I cried for the lost good time my mom and I would have, another memory gone to pain where there should have been happiness. I cried to grieve that these times may become fewer and fewer and I’d missed it.
People do not understand what it’s like to lose moments when your life is threatened with ending anytime.
I'd wanted a mom-daughter bonding night in the city, and our precious time was monopolized by this.
We did make it out the following day. I was nauseas, could barely eat, and throwing up, but what’s new. We went to a dinner down the block where I chocked down hash fries easily before we jaunted off for retail therapy, to Canal St. first of course.
Good thing I had mom, all those judgement impairing meds and me with cash in my hand in Chinatown is dangerous. I know my husband was scared. I had been storing money for this trip, but not to shop, to cover parking ($150), the hotel, meals, travel, etc. However, I also had mom to help. I’m so lucky with my parents.

Now, in shopping heaven, mom is chasing me, hands full of trash bags from items my shopping bonanza trying to chase me on steroids like a women let free in a candy shop. All she wanted to do was make sure I didn’t fall in my frenzy, start throwing up all over the place, and not make obscene purchases.
I had two bags I’d been wanting to buy. Then I had two shirts for X and C. I picked up a box of pokemon cards for X to share and a Qatar FBC Jersey. I’d also made a purchase for Lex as back-to-school gift.
Good thing I had mom for style sense too.
 I had an oversize orange part leather/ part orange/ white canvas tote, and I was not afraid of buying it when she came through with a shoppervention.
I don't know WHY I decided I liked it, but most of all I don’t know how I was so sure J would love it too.
 If I had stopped to envision him with me talking in that store he would have said he didn't even like me in the store, he didn't want me in the whole neighborhood because he knows the crazy fun I have there. There was no way he’d be hopping up and down for some random ugly orange purse I don't need, no matter who it was by, even if it was Micheal Kors.

I got my retail therapy out before heading to real therapy, where I was high as a kite. Thank goodness EVERYBODY from door to infusion was perfect and helpful.

 Infusion therapy was as anti-climactic. It was done in an hour. I was still able to do dinner with a bestie, Laurette, even though I had medicated myself so heavily for being sick and throwing up all ready I couldn’t walk. I kept dropping my blood pressure, almost passing out.

I had to be carried places, but thanks to kytril and dexamethasone I wasn’t throwing up anymore. I was asleep by 9:30, but out the next day for breakfast and Union Square.

I’d never taken mom to Union Square before and it was time. Any place with two five story shoe stores side by side that are fun and affordable is a place she need to be. We also had to make an emergency baby shower present for Vince and Killy, a shower I had tried to help plan, but ducked out with the whole illness thing.

I also got to swing by and see my friend’s Chris and Yanellie’s home in Westchester. They’re my partner’s in crime with the “Z and The Cancer Meanie” book. It wouldn’t have been done without them.
Finally though, the ultimate best was seeing Bekah, long term hodger I follow. She’s a patient like me, along with Chris Carr
We all have a similar pattern of disease and the same goal of living the best quality life while simultaneoulsy treating our disease for the best, longest life possible.

This is a huge change in social cancer dynamics. Previous years placed cancers in the black and white of death or cure. We patients are finding a gray area that makes us happy and keeps us living.   

We look for the best clinic trials (, and adjust our lives to go to the best new technology, trying to stay two steps faster than our cancer.

We have to stay steps faster since cancer patterns show cancer comes back faster and more aggressively the more treatment/chemo/radiation it has had.

Trials fit in nicely because they may slow this progression, though its not yet studied. We’re informally testing on ourselves. I’d love to make our endeavors more formal using to set up what we’ve done for clinical trials and their effects using their monitory tools.
This would allow other patients to review true stories with real people, as well as possibly guiding other studies.
 For  now, the US is adding completely new vaccines (Dana Farber or MD Anderson) or NYU’s directed chemo warhead straight to the cell. Texas Baylor College is offering EEB+ vs. EEB- vaccine trial with a 70 percent remission rate 5 years later (but I do need to fact check this). There are also places for  hyperthermic radiation in Texas, a treatment that’s been successful in Germany for years, but who wants to leave the country.                              
This is absolutely a determined lifestyle that requires you to be healthy enough for travel and the stress that comes with it, but it’s kept the three of us alive for over 5 years now.

1 comment:

B. said...

Hey Hill,

Great seeing you, again here is the link to the EBV+ trial (Epstein Bar Virus)

Glad SGN was uneventful!

Love & Light,