Patient-Friends Category

Wednesday, October 28th, 2009

Gamer Geek Blog Reader

So how Totally Cool is it to run into someone who has been reading your blog?  Someone that you don’t know…  Not Family, not Friend - a stranger who is reading!

This happened to me yesterday, at the Infusion Center, while getting my port-a-cath checked out.

I was waiting, and a Gal and (who I presumed was) her Hubby come in.  Turns out that Mrs. Gal is also a breast cancer Warrior.

Unwilling members of the club we are.

We talk a bit, the 3 of us.  About our treatments, about chemo, about my choice of Burzynski, about Sodium Phenylbutrate (aka PB).  Mrs. Gal is on PB for an unrelated medical condition – she takes 40 tabs per day when needed.  FOURTY TABS!  OMG! The 24 I take daily beat me down, just Beat.Me.Right.Down. I Can’t Even Imagine 40!  Maybe it doesn’t affect her like it does me… Maybe its different cuz of the different medical necessity? Or maybe she is in a whole heckuvalotta more than I am…

We continued to talk.  I got the impression she would have preferred not to, but she was unfortunate to be sitting close to me and I reach out to everyone.

My Bad Habit for those who are not so chatty.

 Anyway…

Maybe the nurse saw something and wanted to “rescue” Mrs. Gal , or maybe she didn’t like us talking about unconventional treatments, maybe it was something else entirely.  The nurse decides to place me in a “private room” for my port access.  Before I leave, I give my email to Hubby and tell Mrs. Gal that I am doing so, so that we can keep in touch.  Please keep in touch.

All goes well and as I am leaving

Mrs. Gal and Hubby are also leaving.

Hubby tells me that he has been reading about me.
Huh?

Yes, reading about me since June, but didn’t recognize me cuz my hair has been growing back.
Since June?
Huh?

Yes, he had read my Geeklist posting on BoardgameGeek (cuz boardgaming is my “passion”).

Wow – how Awesome!  I felt A Mile High on That one!

And they left.  I think her name was Elizabeth, but I didn’t ask his.  Wish I knew.

Y’all out there?

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Thursday, July 30th, 2009

Fight for Fabian

Its “funny” how people come into your life when you need them.

Makes me wonder what I bring to others’ lives, why they would ever need me…

Today, when I went to at Burzynski Clinic for my monthly supply of PB, I met Wayne, the father of Fabian Burke-Georgiou, a beautiful young boy from the UK who is fighting for his life against diffuse pontine glioma, an inoperable brain stem tumor.

Fabian is too ill to travel to Houston, so Wayne came to Burzynski to learn of the treatment and how to administer to his son.  I can’t image a more difficult path for a parent.

And this man, this man Wayne, here in Houston to pursue a chance for his son, a chance for life… this man Wayne, took 30 minutes to sit and talk with me, about fundraising, to give me hope, to offer prayers, To Lift My Spirits.

The monster cancer raises it’s ugly head in so many forms… it does not differentiate between age, sex, race or life experience.

While my own fight is certainly hard, it is especially difficult to see a child having to fight.  One who has not had an opportunity to live yet.  Who has not unintentionally squandered life’s gifts… One who may find unconditional love and acceptance despite flaws…

The least I can do is to ask to please take a moment to go to Fabian’s site and read his story at http://www.FightforFabian.com, and if you have it in your heart, to also please donate to his cause.  Like me, they are only asking for a contribution of a small amount to help save a life.

Help save a life…

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Saturday, July 4th, 2009

Miss Ivana

It’s a good thing when – enduring a medical procedure – you meet someone nice and funny to help pass the time.  I’ve been fortunate so far – most others enduring medical treatments who I have met are interesting people with interesting stories.

Such was the case yesterday (Friday, July 03)… I got to meet Ivana (“I-vane-A”) – a Multiple Sclerosis patient who was also having an infusion.

She is a spunky, sassy gal.  And she had on the neatest chunky green earrings!  She was there with her Mom, who I Swear I thought was her older sister. And Ivana is a Big Chocolate Lover.  She was taking her time with a Symphony bar… I sure do l miss the pleasure of chocolate.  Not much fair about getting cancer AND having to give up chocolate…

Because Ivana’s infusion takes 2 hrs total, her Mom left to run some errands, so we had the opportunity to chat some, while Ivana looked through clothing catalogs.  Nothing like the pleasures of shopping “from home”!

We had a nice time visiting, at least I did, considering our circumstances… and when Ivan’s Mom returned – she brought me a rose – a Sweet Pink Rose with baby’s breath.

Never ceases to amaze me, people with their own struggles reaching out to touch another’s life…

Made me cry… as you can see in the photos…

Picture 1 of 4


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Saturday, June 27th, 2009

Bob & Sofia – Melanoma Patient at Burzynski Clinic

When I got back home this evening, I found an email from Sofia

On 6/27/09, Sofia <(deleted)> wrote:
> Hi Denise, sorry for the late reply. I’ve been busy with work and Bob.
> Bob hasn’t been back to work since we got back from Houston. His blood
> pressure keeps going up and he gets very tired. We still pray and hope for

> the best We don’t know yet if any of his tumors have gone down. I’m glad
> to hear things are looking different for you. You are in our prayers. Take
>care.
> Sofia

It breaks my heart to hear that he is having a tough time.  I sure Hope he starts responding… Please keep praying for Bob & Sofia!

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Friday, June 12th, 2009

Phyllis – Breast Cancer Patient at Burzynski Clinic

I had to run by the Burzynski Clinic today, to pick up some Xeloda to “hold me over” until the Rx comes in the mail.  $347 for 9 pills!  Dang!!

Anyway – while I was there, I met another gal who is also battling breast cancer.  We got in the elevator at the same time, going down to the parking lot to leave.  I noticed her port-a-cath scar, and the device which was pushing against her skin.  I could relate.

I greeted her with a “Port-a-cath” Sistah!  Yes, she is a Warrior, also fighting.

I asked her if her port-a-cath bothered her, as mine is always tender, and hurts regularly.  I’ve been afraid that something is wrong, though when it’s used, the medical staff say everything is ok.  She told me that yes, hers hurts her also.  Her Mother, also a Survivor, had no problems with her own, so it the fact that hers hurt was a concern for her as it is for me and mine. (My Mom never had chemo, so never had a port).

Her name is Phyllis and she seemed like such a sweet person.  We talked briefly, exchanged stories and she told me that she was scared.

Just like that, it popped out – “I’m Scared.”

Me too, I”m scared.  I Am So Very Scared.

Cancer is a Scary disease.  And as we fight, the outcome is unknown.

Yes, I am scared too… very scared.  But I Truly believe that Burzynski is the path to follow.

We hugged for support and strength, kindred spirits in this terrible battle.  We are Warrior Sisters.

I gave her my card, with my email and this website info
I hope she comes here, hope she leaves updates and comments…

Phyllis – you are in my Prayers and Hopes for Recovery!!  Anyone who is praying for me, Please Include Phyllis!

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Monday, May 11th, 2009

Bob & Sofia – Melanoma Patient at Burzynski Clinic

This afternoon at the Burzynski Clinic Weekly Q& A session, I met Bob & Sofia.  They are married and he is battling melanoma for many years.  They have chosen to come to Houston and pursue treatment.

I Truly believe that Burzynski is the path to follow.

I gave her my card with my email and this website info – I hope they come here, hope they leave updates and comments…

Bob & Sofia – y’all are in my Prayers and Hopes for Recovery for Bob!!  Anyone who is praying for me, Please Include Bob!

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