Texts with B

How come all the other cancers get shade but yours doesn't? This sucks.

I know, huh...oh well...it's all good though.

And this is the kind of shit I talk about with B, though that is the first time I actually said/typed the C word. I retold this text to a friend who found it horrifying. I can see that but this is what I do with my brother. I can't joke about this with anyone else but him cause that's how we roll. When he was hospitalized, a day after, I told him how dare he try to 1-up me. (It'd been almost a year since my diabetic life began.) He laughed and remarked that he knew I would eventually say that.

I had a sad

With the BNC playing a show in another city last night, one in which I couldn't attend because of, I dunno, had to work today, I was left on my own for dinner and afternoon companionship. Usually a bowl of soup and a cat or two or three would suffice but after going to the doctor to have my CGM removed, I was in awfully low spirits. Oh, did I fail to mention the ambush at the doctor's appointment Friday afternoon? Well, let's take a detour.

It was my 4-month follow-up and history has taught me that for the past 3 years, visiting the endo in September brings you tests but usually not on the first appointment. Usually you make appointments to come back. ACRONYM ALERT! An EMG, an ECG, and, most dreadfully of all, the CGM. The first two tests don't really bother me. They should but they are nothing like the CGM. I HATE the CGM. The EMG involves some electroshocks on my hands and feet as well as inserted needles (!!!) in my arm and leg muscles, to test for any neuropahthy, while the ECG involves some nice, cold metal things all over my chest and feet and painful blood pressure taking to check my heart, its rate, blood pressure and all that good stuff. Sure, it's scary having these things sticking out of my hands and feet but the CGM just sucks ass. Basically it's a little monitor inserted in my side for 3 days. It looks like a small face hugger a la Alien. The initial insertion stings because they are sticking a needle inside me that will remain there for 3 DAYS. 3 DAYS! Did I mention the 3 days?Afterwards, a huge piece of tape is placed over it to protect the monitor from water, lava and whatever else may come at it. (It's the removal of this clear tape that hurts most of all upon removal.) I'm then given another blood glucose monitor, much different from my own personal one, and instructed to prick my finger before breakfast, lunch, dinner and bedtime as well as write down the times of every meal, details of the meal and when I took my meds. You try writing that down in the restroom of a churrascaria while on a double date with some wonderfully charming folks. Sigh. I know. I'm completely coming off as agitated but I am. My feelings took a beating this weekend. As I said, I was ambushed. Usually I am instructed on when to come back for these tests and this time I wasn't. My guard was down. They asked if I wanted to, I'll give them that, but since I'm not a fan of going to the doctor in the first place, I said yes. I simply didn't want to come back another day and take care of it all if they could do it right at the moment. Stupid, stupid, stupid. I had no support system which meant I was going to have to do this all alone. I was going to drive home alone and in tears. I tried calling my BNC just so I could hear the words you must chill but he was completely unavailable. Then, I texted B who helped me keep my shit together and talked me down from the hysterical tree I was already climbing. So, I totally Cool Hand Luked it and stood there, cracked some jokes cause that is totally one of my ways of coping (DEFLECTION) and took it. I didn't even cry. Well, not until I came home and looked at it in the mirror and felt the sting of the needle.

I completely understand why this has to be, truly I do. But oh man, does it ever make you sad. To sit at the doctor's office with much older people suffering the awful effects of diabetes breaks your heart but it certainly is a major reminder of why I pass on real ice cream, Mexican soda, cake, tortillas, candy and all that good shit and meticulously take my meds, show up at the doctor's office when I don't want to and take it. All those no thanks, I'll pass are worth it. Now, I realize I am far too young for this as well as realize that it's not a genetic thing whatsoever. It just is. Hot damn though. To add insult to injury, I personally know of no other diabetic that has to do the shit I have to do. I guess I should thank my insurance and my doctors but other than the people I see at the endo's, no one I know has to do this. Good/bad? Yes/yes.

So, after having a slightly sad weekend, and being left to figure out what I was having for dinner last night, I called up B. I didn't want to sit home alone and B always brings it and he brought it...at Star Pizza where we talked about our respective diseases and generally commiserated. It was the first time, in a long time, where we spoke about our feelings on them both. Our fears, our wants, the needs and the future, all of it. We're in the same boat about the diabetes and the CML and I'm hoping, we both are, that the day comes soon not only for a cure to them both, but also for the guidance on how best to make change, the kind of change MJ talks about in Man in the Mirror, the kind where you join a walk-a-thon, etc. We'd both like to do something charitable but we're not there yet. So far, we're still adjusting to what has happened as well as the lifestyle change and trying to get to a place where we both feel comfortable talking about it. Most of all, and most importantly, we just want to be as healthy as possible before we move onto the next phase, whatever that may be.

And so, we sat, we talked, we ate, and we spoke about other stuff other than our diseases. And there I learned more about my beloved youngest brother and those years where we all were off enjoying our new adulthood dripping with freedom. It's those first few years where, despite coming to the rescue of B in his many hours of need, that I don't know too much about. The same can be sad of me by him. But, it doesn't matter cause when he called, I answered, I took the hits for him, I gently nudged and I listened much like he did when I had to find someone to help me scoop out the the turmoil eating at me from within. I have said it before and I will say it again, I would die for my brother no questions asked.

So, because we were having some Oprah moments, I failed to take any pictures whatsoever. No food pics, no pics of shoes, no pics of B, nothing. But, I did doodle it.

Behold! B and I and 2 slices of floating pepperoni pizza.

And all is right with the world, for the most part that is. The diabetes has not affected anything with me and my tests are ok. Even a visit to the eye doctor went well despite a slight change in my eyesight. This is all I can hope for; The strength to remember to do what I have to do and the love and support from the people I love most of all.

Done

Cheeks swabbed, labels affixed, mailed.

Do Fun Stuff

Doing my part in support of Ryan over at Pacing the Panic Room.

I've been reading his blog when he was featuring his lovely wife, Cole, in a weekly series to document the pregnancy and subsequent birth of their beautiful daughter Tessa. Ryan is stepfather to the Littlest Buddy who has a rare genetic disorder called Smith-Magenis Syndrome.

Ryan has poured his heart and soul into creating a charity album to not only raise awarenes for SMS but also funds. The album, now available on iTunes, is endearing and awesome and I love it.

Give it a whirl. Do fun stuff. :)

Cleaning & Sorting

While cleaning and organizing my photos I found the following that made me laugh as well as sigh very deeply.

The orange tree outside my parents's home. It's a pain to get the ones at the top. It's where a ladder and the BNC come in handy. My parents share their bounty with the couple across the street who have a peach tree. It's a nice companion to the avocado tree on the opposite side of the front yard. Viva Mexico!

Prior to my brother's diagnosis, I had already decided to grow out my hair to donate to Locks of Love. It was a difficult process since my hair was layered and the donated hair has to be one length and at least 10" long. In September of 2009, I reached my goal. It meant a great deal to me since it took on a more personal meaning earlier in the year. In all honesty, I may never do it again. I loathe long hair on me since I have curly, fine hair and it's a pain in the boom boom to care for. Let's not even get into the humidity.

Bitty Girl chilling on the floor of my car as we await the vet to open for business so Bitty can get her spaying on. She doesn't do well inside the pet taxi.

Oh yea, she is adorable but she singlehandedly brought Christmas down last year. I woke up one morning to find the star that was atop the tree on the floor. I had to bring it down or run the risk of having my beloved Transformers ornaments broken. It took me a year to find one of the lambs that had been missing from the nativity scene.

Boochie rubbing up against Joseph. Sigh. One of the best cats ever.

And I cannot believe that I'll be 34 next week. Already? The only plans I have are dinner. I want dinner, dinner, dinner. And froyo.

National Marrow Donor Program

My brother has chronic leukemia and since day one I have not been able to not think about it. It took me a while but I no longer look at him and see solely that but I worry constantly about how it has affected him. I fear a change for the worse and I fear a life of darkness since, afterall, he's the light of my life. I gave up the bottle for him when he was born and even at 3 years old I know I wouldn't have done that for just anyone.

So, today, after a friend of mine got the call, after signing up 10 years ago, I registered with the National Marrow Donor Program in order to become a bone marrow donor. My brother doesn't need it, not now and hopefully not ever, but that awful day in February 2009, before the diagnosis went from AML to CML, I was prepared to give anything for him down to my own life (still am). However, I would hope that if I couldn't, perhaps someone else could have. This is why I registered, with the complete blessing of my brother, in the hopes that someone will not lose the light of their own lives.

I adore this picture. While the city was scrambling to prepare for Hurricane Ike, B and I went to the Astros game. It was September 11th and a returning soldier surprised his family and I cried. One of our friends, sitting to my right, caught a foul ball. BOO! It was a good time, a few months before shit got really real.