Leukemia

For the past month and a half, my beloved brother has been dealing with his leukemia and it's been shitty.  Real shitty.  I don't know how to adequately describe how I've been feeling because my emotions have been all over the place.  I'm sad, angry, sad, heartbroken, super sad, anxious, stressed, burnt out, and super fucking sad.  I want to scream all the time.  I want to scream as loud as I can from the top of a building.  I want to shout, "FUCK!" until my throat is raw.  I want to take a bat to the ground until I don't have the strength to lift it up anymore.  I want to punch the walls.  I want to run.  I want to run so far away.  I want to cry and scream and not wake up until the leukemia is gone.  As I type this, I want to puke.  I want to puke all of my insides out.  This isn't supposed to happen.  It wasn't supposed to happen.  Anyone but my brother.  Why not me?  Not my brother.

From one moment to the next, things can change.  It did here.  Brother's body started resisting his meds for CML and, in a week, it accelerated into ALL, a very aggressive form of leukemia.  It grew so rapidly and my brother was in so much pain that briefly, I feared the worse.  And yet, I didn't cry.  I held it in.  I didn't want to cry like I did last time.  And yet, one day, while I was visiting, I was informed that brother needed a lumbar puncture to check if the leukemia was in his spine, which is bad.  And they wheeled him away and I stood there, holding in those tears, screaming at them from the inside, "Don't you dare fall.  Don't you dare trickle out of my eye because I know you won't be the only tear. You'll bring your friends. DON'T YOU DARE FALL OUT!"  As soon as brother was out of the room and down the hall, I sat down, held my face in the palms of my hands and cried.  I cried puddles of tears into my hands and sobbed.  The BNC, who must have developed ninja skills because I didn't hear him creep up to me, all while holding The Kid, stroked my hair, held his hand on my head and then left.  He knew I didn't want Noah to see me like this.  

The sleepless nights I endured when I was younger have returned.  I lay awake at night, hiding my insomnia from the BNC, and think horrible thoughts.  The Kid never really kept me up but my brother's disease does.  I think of all that he has gone through and all that he will have to go through.  I think about how I need to not cry in his presence.  How I need to keep it together for his sake and for our parents' sake.  I think about The Kid and how he can't see me upset because kids are smart.  Brother was upset one day and Noah came over and stood in front of him and held his knee.  I'm sure he knows something's up and I'm preparing myself should he ever ask me about memories he has from this time.

All the doctor appointments, the special tests, the blood transfusions, the chemo treatments, the dialysis for his blood, the lumbar punctures, the loss of hair, the pneumonia, the biopsies, the bruises on his back and his arms, the port on his chest, the morphine-filled phone calls in the middle of the night because he was so doped up he didn't know what time it was, the special clean room he was in, the move to the ICU because he developed heart arrhythmia, the throat infection, talk of a bone marrow transplant, Sportscenter all day, and my brother laying there, doing it all, fighting back his tears, not wanting to be there, and slowly breaking my heart watching this, this is what we've been through otherwise known as my family's darkest hour.  

I thought a lot about my brother during this time but also of my mom.  Now that I am a mother, I have looked at her in a whole different light and have grown to admire her so much more than I already had.  However, I cannot imagine what she went through, and still is, as her son, her youngest child, battles leukemia.  I prayed for her.  I asked people to pray for her.  I don't know what I would have done had it been my own kid going through all of this, feeling powerless because the one thing you want, enduring this rather than your kid, isn't going to happen.  My momma had already lost a son, born before me, and I know it changed her.  She still thinks of her lost son, mourns for him, wonders what he would have been doing now so watching her 33 year-old son lay there, broke her heart all over again.  My dad, watching all of this, crying, begging God to spare his son, all while my brother shed hair and spoke incoherently to people who were not in the room.  

And is spite of this awful time, I look to my faith to help me keep it together.  I don't question why or how because it can drive you mad, but rather, I seek strength during these most difficult times and I must be getting it because I've made it this far without cracking.  I do beg.  I beg just like I did that time 4+ years ago.  I beg for my brother and I won't stop begging.  I also have had the BNC, who has been a rock to me and my family.  He's run errands for us and checked in on Brother when we couldn't.  The support of family and friends has been overwhelming.  Just this past Saturday, a benefit was held to help raise some funds for Brother whose short term disability will end soon and, if he's not back at work in January, will have to be let go.  Our goal more than doubled.  It was amazing and so emotional and I wish I could thank everyone who is praying for us.  It was quite the job to handle all the phone calls and texts from people wanting to help.  My brother's friends are amazing.  I started coordinating who could visit and take food otherwise Brother would have had about 10 dinners taken to him each evening.  I'm glad we aren't alone.

I also have my Noah who celebrated his first birthday while B was in the hospital.  He's hit several milestones during this time as well such as walking, drinking milk, dancing, learning to be gentle with the cats, etc.  He's been a joy and part of my salvation.

My beloved B, the light of my life, my growing-up partner in crime, one of my bestest friends, one of my favorite people, how I love thee...

I Was Unprepared

Today marks the 2nd anniversary of the passing of the BNC's beloved Grandmother. If I close my eyes and transport myself out of here, I can smell her house with that Grandma smell made up of food, candles and memories. I can feel her hands so translucent, soft, warm, nurturing. I can hear her voice announcing our arrival to her home whether anyone was there or not. And most certainly I can feel the love. It was evident from our first introduction, several years before, that she held the BNC in extremely high regard. Watching them together, as the BNC turned into mush, warmed my heart. Her passing had been expected for a while but it still came as a surprise because you always think you have a little more time. And that is awful, just awful. The family, huge even by Mexican standards, slowly gathered at her home as the day progressed completely at a loss as to what to do. Grandma passed at home, in her sleep while her only daughters (2 of them) were with her. In all honesty, I had never been in a home where a body lay and simply calling Grandma that makes me feel sick to my stomach, but it was something different for me. Then again, I was not present when my own Grandfather passed away including other members of my family. My Grandpa's passing was the first funeral I had ever attended and I was 21 years old. But, it's this unfamiliarity with death that would break me to pieces the day after Grandma died because it was then when I had to put Boochie down. It was something unfamiliar to me as well. I didn't know it was going to be that hard and if you don't know something then you can't truly prepare for it. So, I fell apart very slowly. By the end of this particular 2-day period, I couldn't cry anymore. I was so defeated as I was unprepared for both of these deaths. I was unprepared to sit in a house waiting for them to show up and take Grandma away. I was unprepared to watch her get wheeled out of the house while I held my breath for what seemed like an eternity. I was unprepared to see so many people cry for the first time in the entire time I had known them. I was unprepared to say good-bye to her. I was unprepared to go home and finally succumb to the decision that had to be made concerning my cat. I was unprepared to say good-bye there too. I was unprepared to walk into the vet's office as the staff gave me The Look. I was unprepared to hold him while he went to sleep indefinitely while I cried and cried for him because I kept thinking this is not happening. I was unprepared to go to sleep without him that night. I was unprepared for the lasting effects of putting the greatest cat ever down to sleep. I was unprepared for the hole he left in my heart and my little family. I was unprepared for these back to back deaths. I was unprepared for just how awful that week was going to be. I was unprepared of how hard the life of a pet owner could be. And here I am, 2 years later, most certainly prepared but now with a bandage on my heart because that's where it hurts the most.

Grandma was buried on Halloween day and since November 1st is Day of the Dead, we will be spending the afternoon at the cemetary just like we did last year.

We totally fit.

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.