No One Fights Alone

My life is a walking contradiction.

I am happy and sad.

I am angry and understanding.

I am proud and defeated.

I feel like my brother passed so long ago but it also feels like yesterday.

Grief is suffocating.  I feel so many things.  I feel so many emotions in the blink of an eye.  For example, this morning, memories of my brother popped into my head.  (They always do.)  And I was suddenly overcome with tears and pain.  I begged B to help me, to ask God to help me.  And, just like that, my moment passed.  My brother was hospitalized a year ago.  My baby's birthday is coming up and it reminds me of last year when I wanted to cancel the party but B told me that the "show must go on" so I didn't.  I was so happy that day and so heartbroken that B wasn't there.  I only relented because I told B to get better so he wouldn't miss anymore.  The fact that he won't physically be there breaks my heart all over again.  The reminder that things can change in 1 year is also gut wrenching.  I miss my brother oh so very much and I just still cannot believe, 3 months later, that I have lost my brother.

I want to share this video of Stuart Scott giving his speech at this year's ESPYs.  I never liked to say my brother lost his fight to leukemia but I couldn't find the right words.  Mr. Scott did.

"You beat cancer by how you live, why you live and in the manner in which you live. 
And when you get too tired to fight, then lay down and rest and let someone else fight for you."

Stuart Scott's ESPY Speech

Yes.  That is it.  

I love you, B.  I miss you terribly.  

Liz Lemon!

Everything reminds me of my brother.  Everything.  I see a Liz Lemon quote, I laugh and think, "OMG, I have to call B!" only to quickly remember he's still hospitalized in ICU.  This morning, while watching Sportscenter, it happened again.  I plan on making spaghetti and realize that I can't save him any because he won't be eating it for a while.

God help me if anything happens to my brother....God help me indeed.

Heartache

Nothing I have experienced in my 37 years could have prepared me witnessing my brother in ICU, hooked up to a breathing machine, with arms restrained.  I mean nothing.  How does one not shed a tear?  How does one not go up to their brother and say, "I'm here, Brother.  I'm here.  I'm always here." with tears in their eyes, with a knot in their throat?  How does one not run to his beside, when you are getting ready to leave because he is trying to grasp your hand, trying to say something?  "I'm here, Brother.  I'm here.  No, don't talk.  It's okay.  I love you, Brother.  I miss you.  Please, please, get better.  I need you, Brother."

This is hard.  My heart hurts all the time.  I want to puke my insides out all the time.  It took so much strength to not carry my brother in my arms when I left him yesterday.

This is all I have to say.

Good-bye 2013, Hello 2014

The second half of 2013 was definitely hard on us.  My brother's leukemia has dominated everything, almost overshadowing the good things of 2013.  However, it's those good things that kept me from falling apart.

For example, this kid here helped keep my sanity intact.

All the drooly smiles, the hearty laughs, the raspberries, kept a smile on my face and in my heart.

I thoroughly enjoyed watching my son learn and discover the art of walking, eating, playing and gnawing on a cat.  

The screams of joy on the swing, or watching himself on my cameraphone are not to be missed.

The speed at which he is growing is astounding.  His foot is measuring at 7 and he's in size 24-month clothes.  Yikes.

Great sleeper, eater and extremely active.  It's how I know something's wrong; when he wants to cuddle.

And he loves to read.  I have caught him several times "reading" and I love it.  I'm hopeful that he's continue this love of books, like his momma, throughout his life.

So, Merry Christmas and Happy New Year, gentle reader.

May 2014 be special and magical for you.  Only you can make it so because I believe everyone is magical.  Just look at Noah.  He can light up a room with his toothy smile and silly laughs.  My son the magician continues to save us all from the heartache of leukemia as well as anything that may ail ya.

Christmas Wishes

My apologies for the heavy lack of posts.  Shit happens and when shit happens, you don't blog a lot even though you have so much to say about the shitty time you find yourself in.

My brother is in the hospital again.  4th time this year.  Today marks 2 weeks and I miss him dearly.  His daughter turned 1 yesterday.  It's heartbreaking.  My Christmas wish is to have my brother home for Christmas.  I want to make him the lasagna he craves.  The turkey I didn't make for Thanksgiving.  The birthday dinner I'm waiting to cook for my niece/Goddaughter.  Everything.

But, there is a silver lining.  Our long estranged old brother is my younger brother's match for the bone marrow transplant which will occur next month.  The Lord works in mysterious ways because what I once thought was an irretrievably broken relationship with my older brother now has a stepping stone towards reconciliation.  So, on Saturday, while my mom answered his call, I asked to speak with him, my brother, whom I had no contact with for over 4 years (because of prison and whatnot) and thanked him for helping our younger brother in his time of need.  He went on to tell me that it was hard to see our brother that way but he is happy to help and looking forward to helping our brother with his disease.  And with that, my mom was happy.  My heart was happy.  My younger brother was happy.  I said to JC, "Okay.  I get it.  Stop pushing."  And I laughed because I like to make jokes about a lot of stuff especially about some things that people think are blasphemous.

But please, JC, please bring my brother(s) home for Christmas.  Please.

As for Noah, he is great.  16 months and thriving.  I promise to try and have a year in recap.  

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...

Humpty Dumpty

That awful anniversary came and went and I forgot all about it.  I guess the trauma is slowly removing itself from the front of my brain.  This is a good thing.  However, when I close my eyes and let my mind wander there, I can still smell that day.  I can still feel the emotions of that day.  I can still feel my heart breaking into a million little pieces again.  My heart managed to piece itself back together again but not like the way it was before.

Still praying for a cure because even though it's pushed back into my head, it doesn't mean it's disappeared.  That CML is still living within my brother.  And unfortunately, anything can happen and that scares the living daylights out of me.

I love you, brother.

The Results Show, Part 2

Last Friday I had an appointment with my endocrinologist, endo for short, to get the results from my blood work, which was drawn towards the end of October.  (Side note:  I have visits with my endo typically every 4 months, or whenever he deems it necessary to drag me out there to talk to me about stuffs.  Usually, I don't get the results from my blood, which is scheduled to get taken after my visit, until my next 4-month follow-up.  And, unless something major shows up, which they would call me about, then I hear nothing until said follow-up.  It's sounds odd but it's been working for me and my endo for years now so no biggie.)

After the typical LONG ASS wait at the endo's, I get seen.  As I mentioned, I've known my endo for years and we've been doing this dance for a while.  However, before my official diagnosis, it was merely a yearly visit.  At this point, we should be exchanging Christmas cards and gifts.  I'm sure he'd give me a new meter or some strips.  Humfph.  Anyhow, the big reveal came and hooray if he didn't say I was doing fabulous.  My A1c is 6.4, a great number to be at, and my cholesterol is down.   It's so good that apparently my shit is better than my endo's.  What, what?!  The one thing that I have to work on, other than lose a couple of more pounds, is work on getting my good cholesterol up.  How the, what the?  I've been told adding fish to my diet would help but I'm not a big fan of it so good luck to me. 

After the awesome doctor visit, one in which I totally high fived my endo, I made plans to hit the grocery store and celebrate with a few scoops of diet ice cream.  Lo and behold, JC (one who has twarted many of my plans to cheat and eat this summer) and, just maybe the doctor, had other plans for me.

No ice cream.  Nothing.  What the rocky road?  I get it though.  So, well played, JC, very well played. 

But, then I called B and had an early dinner with him.  Apparently he had an appointment with his oncologist and he's rocking it too.  So, we celebrated on mediocre cheeseburgers at Porch Swing and made fun of the fact that only people with diseases were invited to our little celebration dinner.  It's been a week and I am still high on the news.  Actually, more for B since his blood work came back with the CML barely making a blip on the tests.  Most excellent news.  See you in April, Mr. Endo. 

EDIT:  My brother has appointments with his doctor every other month and while his CML is barely showing up on his tests, it's still present and will remain so until...well, we'll figure it out when we get there.  He also has to do a yearly bone marrow biopsy.  So, there you go.  Let's cue NBC's The More You Know music and graphics.  ;)

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.

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.