Friday, August 19, 2011

Just Because I Can't, You SHOULD

People often ask me if it makes me uncomfortable if they eat in front of me, or they'll apologize before eating something. Stop it, will ya?!

Eating is one of life's great pleasures. Just because my experience is a little less pleasurable now, does in no way mean that I want your taste buds to suffer, as mine do.

By all means eat the juicy piece of cake dripping with icing. In fact, eat three, please. I'll watch. This is better than a racy onscreen lovescene.

It took me a while, but I'm no longer bitter about what I can't eat and I don't need you to feel sorry for me about it either.

To prove it, I'll help your children make homemade ice cream, insist they pour an entire bottle of sprinkles on it and watch as they dissolve into a sticky, giggling puddle of pure joy. Who would want to deny them that? I gladly encourage it.

I'll even make you homemade tittycakes for your Bachelorette party (two of my close friends are getting married tomorrow. I introduced them. I couldn't NOT bake them a celebratory cake?!)

So the next time you feel a pang of sympathy for my lack of desert options, have one in my honor. It's the right thing to do.

Friday, August 12, 2011


A friend linked me to this article. My infectious disease specialist had mentioned this just last week and I wasn't able to find any articles at that time. Apparently they just released the info a few days ago (I guess I'm in "the know" being on the inside? Hmm)

It's interesting to think about. Stanford has some great programs going on right now. I'll be working with them when I start my clinical trial in a few weeks.

'Baker's yeast protects against fatal infections (8-9-11)

Injecting mice with simple baker's yeast protects against the fatal fungal infection, aspergillosis, according to research published in the Journal of Medical Microbiology. The work could lead to the development of a human vaccine that protects immunocompromised people against a range of life-threatening fungal infections, for which current therapy often fails.

Researchers from the California Institute for Medical Research, Santa Clara Valley Medical Center and Stanford University gave mice three injections of killed Saccharomyces (baker's yeast), one week apart. Vaccinated mice were able to survive high doses of Aspergillus – the fungus that causes aspergillosis. Mice that survived also showed a reduced infection load in their organs.

Aspergillosis is the leading fungal killer among immunocompromised individuals. It is an invasive infection that attacks the lungs, can disseminate to other organs, such as the brain, and can lead to kidney and liver failure. The disease currently has very high mortality as the current available therapy has a high failure rate.

The research team used a simple yeast preparation as a vaccine against Aspergillus in mice. They found that unmodified yeast gave just as much protection against the development of aspergillosis as yeasts that had been engineered to display Aspergillus surface proteins. Dr. David A. Stevens, from Santa Clara Valley Medical Center, in whose laboratory the studies were performed, said, "Our results suggest that the protective component of the yeast is in the cell wall. What's more, the simple preparation we used has been shown by us to also protect against infection due to three other fungi that cause human disease – Candida, Cryptococcus and Coccidioides."

Baker's yeast is being studied by other groups in human clinical trials for other purposes and appears to be safe. "Research to date, including our study, supports the development of a yeast vaccine against all pathogenic fungi that infect humans. Such a 'panfungal' vaccine would further reduce mortality in immunocompromised individuals," explained Dr. Stevens. "While vaccinating all individuals with impaired immune systems would be a formidable challenge, there are certain patient groups that might be the initial target of a vaccine effort. These include transplant candidates, leukemics following induction therapy and also patients diagnosed with solid tumours."'

Who knows, this could be the start of something really great.

Sunday, August 7, 2011


Guy: "You're absolutely glowing."
Moi: "It's 117 degrees out..."
Guy: "But you seem to be enjoying it."
Moi: "I am. Very much."
Guy: "This kind of heat kills most people. But you, you seem so alive."
Moi: "That's precisely why I'm here."

Saturday, August 6, 2011

Take a Chance, Write Your Own Life

It's always amazing to me how certain things pop up in our lives just at the moment they're needed/relevant.

Enter 14 year old Emily Qvistgaard. This amazing girl has end stage renal disease and is waiting for a transplant. Recently my friend Dave Tweedie was able to help make her Make-A- Wish come true: recording one of her own songs.

You can download this song free on iTunes :)

Her insight and happy disposition are inspiring. I cried like a baby watching that video. I think we can all take a page from her book.

The parts that got to me the most are:

"Love life. Love the way you live it
Don't try, just keep on breathing
Wishing on a shooting star"

"If I could get away
I'd run away
and stay away
I'd walk right out that door"

Knowing what having a chronic illness is like, I say "Amen" to that

"When I get a chance, you know I'll take a chance"

"You are the writer of your life and
You choose how you want the ending

Decide how you want to tell it
Shine on, there's nothing to it
Release all your weighted regrets
Just let nothing get your hopes down"

I really identified with this song and couldn't have heard it at a better time.

In this article it states "through diet, and a daily dose of several medicines, Qvistgaard was able to stabilize her condition.
She religiously watched the amount of protein and salt she ate. Today, she even gives herself daily injections and lives with less than one-quarter kidney function."

Wow. Different illnesses, but strikingly similar circumstances. If I start to feel sorry for myself about my situation I'll remember Emily, who at ten years old, faced what I didn't have to deal with until age twenty-four. I had more than twice the life she did before getting sick. This girl is incredible and inspiring. I wish I could give her one of my kidneys.

So in regard to kidneys and taking chances, I have some updates:

-My kidneys are functioning at 60% so I will be cutting back on the hemeoperfusion(blood filtering)again and seeing how my renal function fairs. We've slowly been tapering it down this year, from every two weeks, to recently, every 4 weeks. Now it will be every 8 weeks. Hallelujah!

-I will be weaning off the steroids over the next 6 weeks. I'm going to apologize in advance for the Hulk behavior that is likely to arise from this.

-After I've weaned from the steroids I will be taking part in a clinical trial and will be taking a new experimental oral drug. I'm taking a chance. It's my life and I'm choosing how to write it. (Thanks Emily)

The trial is 6 months long (from Sept-Mar), so it will bring me to the 2 year mark of getting sick and to my 27th birthday. Two pretty significant milestones, I must say.

During that time I will be monitored very closely, all my specialized medical care and prescriptions will be covered (this is a HUGE weight off my shoulders), AND they will be paying off most of the enormous debt I've already accrued. I really see this as an opportunity to get my life back and I'm willing to take the risks to have that.

Please, any positive energy (prayers, thoughts, mojo, etc) you can put toward things going well would really help. Put some out there for Emily, too. We need someone like her around.

Friday, August 5, 2011

To post, or not to post...

That is the question.

There's about to be a whole slew of TMI. (You've been warned.)

I have yet to have dates, but I did make a raw pie-like thing by mixing butter and almond meal for a crust, then putting Greek yogurt and plum on top.

The only thing is I don't think my system was ready for the butter and I vomited all over the gearshift in my car. And I thought that time I puked all over the steering column while on the highway was bad!

Luckily, I'd just eaten a bunch of beans so it was pretty solid and easy to clean. Plus, last month I accidentally dumped a bunch of crumbs all over the gearshift that I never fully cleaned, so it prompted me to do so. Now my gearshift is as clean as my butthole!

I took a pic because I thought it was hilarious, but I'll spare you that, here. If you're into gross stuff, I've got quite the collection of pics now. Let's talk.

Wednesday, August 3, 2011

Decisions & incisions

Yesterday I had my one week jaw post-op check up. They took the external gum stitches out to examine the wound/bone and see how it was healing.

I made them take a pic before they restitched it.

If you're squeemish I'll pretend to be sorry for showing you this...

(It's hard to see, but the incision is about an inch long) Pretty, eh?

Things look good, so they put in dissolvable sutures, and gave me the go-ahead on straws and chewing on that side. I go back in 3 weeks...

*A week ago I met with the infectious disease doctor and went over, in detail, the results of all my tests (including my kidneys- which I will update on soon). We talked about possible options for my course of treatment, medicine, possible clinical trials, etc.

I've elected not to discuss any of that information with anyone because I wanted the decision to be MINE, solely, without any commentary or persuasion.

I've pretty much made my decision, and once the ball has been rolled, I'll outline what it entails.