Feast or Famine

If you had to choose, would you rather know absolutely nothing, or know everything all at once? Six months ago, I chose to know nothing, resulting in six months of anxiety and anguish. Then, yesterday, I chose to have six months worth of information fed to me; which I promptly choked on.

Back in August, I chose to take a chance and "write my own life." My kidneys were functioning pretty well, considering. I was weaning off my heavy dose of steroids. I was brimming with hope. I started a blind six month clinical trial on September 30th.

Up to that point, I had been on a mostly need-to-know basis about my health. Just tell me what to eat, what medicine to take, what doctor to see, and I'll do it. I don't want to know numbers, or names, or reasons. It was just way too much for me to chew, so I didn't bother biting the bait. I figured, going into the trial, that what I didn't know couldn't hurt me. Wrong

The last six months have been nerve-wracking and difficult. In November, I experienced some kidney failure which screwed up a whole mess of stuff. That created some circulation problems which exacerbated my foot problems, leading to reconstructive foot surgery in December, which I'm still recovering from.

My trial ended a few weeks ago, and I had a bunch of tests done, including an EMG and nerve conduction study, my least favorite of all my tests, that made me cry, and which I failed miserably. I'll write about my jerk of a foot another day...

I was given the option of continuing the trial; going back to what I'd been doing before it; or seeking out new options. I sat on the decision for a few weeks. Mulled over the choices; made pro/con charts; and extended the deadline to make the decision, twice. I even took to Twitter and Facebook to help me decide: "I've been mulling over a big decision & can't decide. Should I choose option A, B, or C?? Pick one! I'll go with the most picked letter..."

Clearly, that didn't work out in my favor.

The D is compliments of a smart-ass

I ended up deciding that my old treatment made me feel like death, so that option was scrapped. I also decided that the current trial was too nerve-wracking, not knowing anything, so I scrapped that idea, too. I am currently seeking out new treatment options.

So, since I opted to end the blind study, I was able to go in and hear everything the trial entailed. Dun, dun, dunnnnn

Let me just say that I can't remember another time, ever, in my entire life, that I have been THAT angry. This is coming from someone who was a tornado of rage as a kid; from someone who was recently on heavy doses of steroids; from someone that used to make drunken scenes in bars. Hell hath no fury like me in that conference room yesterday. BUT, I didn't crush anyone's skull, I didn't even overturn my chair. (Look, I'm growing!) I didn't say anything more than "That is seriously fucked up (Yeah I said it, get over it) and I don't care to hear anything else you have to say. You can go now." I bet they still have stars in their eyes from the death rays I gave them.

"Irreversible kidney damage" "Circulation disruption" "Peripheral neuropathy" "Hearing loss" "Phototoxicity"

Well that sucks

As someone who already had underlying problems with my kidneys, nerves, hearing, and skin, it was very upsetting to learn that the main side effects of this drug were in my most problematic areas.

But, before you say what I've been hearing repeatedly. No, I'm not getting a lawyer. There are risks with any medication, especially the medications used to treat Aspergillosis. Furthermore, who is to say these areas aren't particularly problematic because of previous medications, rather than the infection, itself, to begin with. Even if I have my suspicions about what caused what, there's really no way to prove it. Last, I was paid a very large amount of money to participate in this trial, all of which was spent on my medical debt, and is long gone. I also signed a stack of paperwork that, in short, said "if we kill you, we're not responsible." I took a chance. It didn't go the way I'd hoped. Even if nobody is at fault, I can still be angry about it.

While I'm angry about the side effects, I'm not that angry at the medication, itself. I'm not even that mad at the researchers who developed it- it's all trial and error, and I get that. I'm only a little angry at the doctors for not telling me because they were just doing their jobs.

I'm mostly angry with the situation. Anger is a secondary emotion; and in this case, it is a combination of loss of control, disappointment, and shock. I'm angry that I have to deal with this shit. I'm angry that even my doctors are baffled by this disease and how to fight it. I'm angry that it wasn't a miracle drug that was going to save us all. And I'm angry that I was kept in the dark about all of it, and left to believe that all the pain, and weakness, and loss of feeling in my hands and feet, and blood toxicity, and kidney failure, and ear infections, and surgery were not necessarily directly related to the drug (even though I strongly suspected some of it had to be). I'm angry that I'm just now finding out these crucial facts four months later. I'm angry because it's scary.

What I'm most angry about is the fact that I went through this process, and screwed up my kidneys and circulation in the process; that I had surgery, and am having an extremely difficult time regaining function of my foot; and that my fungus levels are basically the exact same as when I started this trial. So basically, health-wise, I'm worse off in most ways for doing it. And that hit me HARD. There are good things that have come of it and when my roses sprout up from this pile of manure I'll be sure to spotlight them. In the meantime, I'm up to my elbows in dung and too distracted by the smell to look for silver linings, right now.

Now, I'm the risk taker of all risk takers, and a ridiculously hopeful optimist, mostly to my own detriment. But, the risks I take and the dreams I make are on MY terms. Letting someone else take risks with my life, and give me hope when there is none, and telling me what to do, without me knowing why, is not something I am interested in doing ever again.

Now that doing another blind study is off the table, I'm open to suggestions. I have enough medication to get by for about another month and then I'll need to put another plan in place.

In the meantime, I've got this playing on repeat:

And then...

So my trial ended on Friday. I found out a few things, I didn't find out others, and I was given some things to think about. I don't have much to share yet, but I can say that I'm doing okay and I have a few options for how I want to continue my treatment. I'll share once I've made my decision next week.

After leaving the doctor, the first thing I did was bleach my blonde stripe. I'm so vain, I probably think this blog is about me... I hadn't been allowed to bleach it for the six whole months of the clinical trial (thank goodness I was still allowed to use hemp dye on the rest of my hair during that time) and it was in sore shape.

Holy roots, Batman!

Also, thanks to the generous help of my family and friends, I met my $2,108 fundraising goal for my Free To Breathe Yogathon earlier today! My team has raised over $4,000, too! (If you want to see previous updates you can click the "Free To Breathe" label at the bottom of this post)

I'm still sore from my EMG earlier in the week, but I'm pushing through and am now able to do about 30 sun salutations!

In other news, we bottled our homebrewed beer "Make It Or Break It" the other night.

I obviously can't drink my share of the batch, so if anyone wants to try it let me know- there's a bottle with your name on it!

Speaking of beer, I hope everyone enjoyed their green Guinness today, and some corned beef, too! I had some cabbage- exciting, I know...

P.S. I had pie for breakfast today! :)

A whole lotta updates!

Clinical Trial

Back in July I had a boat load of tests to see how my body was doing with the Aspergillosis. The results were promising so I decided to take a chance and participate in a clinical trial that started on September 30th.

The trial will be over on March 16th, so today, tomorrow, and Tuesday I'm having tests done to check my progress. I had bloodwork, an ultrasound, xrays, and a Flouroscopy today- piece of cake! Things looks really good, from what I could tell/was told. They can't tell me anything, definitively, yet

Tomorrow I'll have an MRI and CT scan- during which I'll take a nice little nap.

From the looks of it, I will not be subjected to a Barium enema or swallow, a Colonoscopy, a stress test, a Broncoscopy, or any probes this go round! (This week keeps getting better and better!)


Foot

Tuesday will be the fun stuff: Electromyography & nerve conduction study, during which I will sing show tunes to myself and try not to sob. Awkward

I've been turning my crutch around and using it as a cane part of the time. On flat, short distances I can walk hands free, but if there is any change in the surface, I need help. I've been mastering downhill with the cane-side, but uphill is still extremely difficult for me.

I made grand predictions on how well I would do with my foot recovery. Things haven't gone as well as I'd hoped. And it started out so promising, too!

I'm at the 3.5 month mark. I said I'd be ditching the cane and walking on my own by now. My doctors said I'd be ditching the crutch for the cane. Turns out, every once in a million years, I'm not right. Damn

I wanted to be walking by my birthday in two weeks. That is obviously not happening, so I'll settle for moving to the cane by then.


Yogathon

I'm working on the physical part. It's a lot of work and if it weren't for a fundraiser or incorporated into my physical therapy, I would probably not be doing it. Luckily, I love a challenge!

So far, I have raised $1,678 and I have two weeks to hit my final goal of $2,108. That's $430 more to go! My team has raised $3,316 so far! If we all hit our goals, we should hit $4,000!

I am overcome with gratitude to everyone that has cheered me on and donated to the cause. I am so very blessed to be surrounded by such supportive people. Thank you for being a part of this journey.

If you'd like to help me reach my goal, you may donate here. Every little bit counts!


*In other, totally unrelated, but equally awesome news: my niece is rad.

Brand new ending

It has been a whole two years since I embarked on this journey and my entire world was turned inside-out and upside down.

Two years ago, I was fighting a raging yeast infection on my face and in every nook and cranny. Everything I ate came back out with a vengeance. I was five months sober and all the things I'd tried to drown with alcohol were floating to the surface. I was living off ice cream, pie, donuts, and candy bars because I had no idea what they were doing to my body and they were my way of dealing. I was in a relationship I wasn't prepared to handle. I was a mess in every sense of the word.

Mmm, birthday cupcakes at a Czech bakery in Texas.

A year ago, I was struggling through each day, gasping for air and cursing every breath. I was living on raw vegetables and measuring out every single thing I ate. I was taking about 50 pills a day, getting intramuscular steroid injections (Chernobyl via syringe) in my thighs, having my blood filtered, and sitting for hours long IV drips. My foot felt like it was filled with killer bees and stuck in a bucket full of cement. My everything hurt, All. The. Time. My steroid induced mood swings and memory loss led me to isolate myself to avoid embarrassment. There were days I felt more dead than alive.

I tried to live fully, but when you feel like shit all the time, it's hard not to long for greener pastures.

*Today my world was rocked, literally, by an earthquake that originated under my neighborhood (just a block from my house!), and also figuratively, by the arrival of my niece! Birthquake!*

These days, I'm in such a better place than I was last year or the year before. I have a better handle on my food and don't have to monitor it as closely. I'm allowed to eat more things than I used to. I don't have to test my own blood sugar, and I don't get thigh shots or IV meds anymore. I only take 3 pills a day! I rarely have my blood filtered and my kidneys aren't in meltdown phase anymore. I made it through the winter without a single respiratory infection. My foot, while still an asshole, is getting its act together. Aside from being sore from PT and yoga, my body doesn't scream at me like it used to. I'm wildly and utterly happy. Who is this girl?!

I can even enjoy meat! (From 4505 Meats, of course)

So six months ago, I began a clinical trial for an experimental drug. The end of that period is on the horizon. (March 16th) Tomorrow I meet with my doctors to find out what tests I will undergo over the course of the next week or so.

The results of those tests will determine a few things, such as what comes next in the game plan, if I can add more food, and ultimately who is winning: me or Aspergillosis.

To up the ante, my best friend informed me this morning that if I'm cleared on tattoos, we're getting some for my birthday. I haven't been allowed to get tattoos while I was sick since the risk of infection was too high, but I've been wanting one the entire time. If things are going as well inside my body as they seem to me, I should be able to get one. The pressure's on!

"Though no one can go back and make a brand new start, anyone can start from now and make a brand new ending." Carl Bard

Here's to whatever the next chapter may be and to the ending that is being constantly rewritten, may it be a good one.

Where in the world is Carmen Bren-Diego?

I just got back from a week away- and boy what a week it was!

I spent a few days in Chicago for a fan event for the soap opera All My Children's 41 year final airing. I got to meet and hang with some great people; including celebs, fans, press, fundraisers and promotors; as well as explore the city. It was an amazing experience.

Then I jetted out to NYC for a musical opening. Again, I met and hung with some really great people; including actors, producers, composers, fans, and a friend from college. I always love the time I spend in NYC. I also got to see live opera performed in Times Square, which was amazing. The musical was better than I expected and it getting rave reviews. It's called Effing Hipsters and it runs until Oct 8th. If you're near NYC go see it!

Traveling on my diet is often difficult and depressing, but this time I was so busy I hardly even noticed. I pretty much have my diet down to the point that it's becoming old hat to me. I brought raw almonds and my special oats with me, scoped out Bren-friendly restaurants, bought a bunch of veggies, and things worked out just peachy.

Heck, Mayor Bloomberg even bought me a drink! My that was some fabulously fancy water! ;p


I'm exhausted but I am so glad I was able to do this. I had amazing experiences. It was so nice to be away from reality for a hot minute: No doctors appointments, physical therapy or pokes; No children to corral. I did spent a lot of time and mind-space dealing with the aftermath of the robbery/identity theft, but thankfully with some ingenuity and help from great people I worked it all out.

I did my best to rest up as much as I could, but there was so much going on! After I finish this post I'm actually going to head to bed for the day/night (yes, it's only 1:30pm). The last thing I need to is to get sick right now.


Update:I had my 2 month jaw post-op appointment today and things look really good. I go back in a couple weeks for my permanant bridge placement and then I'm hopefuly done with the jaw/teeth debacle.

Tomorrow I start my clinical trial and new experimental meds. I'm nervous and excited and dreading and finger-crossing. And away we go...

Hope

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."

http://www.eurekalert.org/pub_releases/2011-08/sfgm-byp080811.php'

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