Thursday, February 24, 2011

Another Shining Angel

I've tried many, many times over the last six hours or so to begin this post with words that expressed both deep respect and intense sadness. None truly suffice. So, I will just write from the heart here in the hopes that my words can somehow express to the Jones and Fraijo families how touched and grateful I am to have known your sweet Olivia and so many of you, and how deeply sad I am for your loss.

The passing of any person is sad, but the passing of a child is just... breathtakingly sad. Gasping, sobbing, unfairly, desperately sad. Horrifyingly unfair. The kind of unfairness that reaches deep into your insides and pulls out your heart.

Olivia was, without a doubt, a special little girl with a very special family. I could see that so vividly on the night that nearly the whole Jones clan, plus Aunt Lizzie (CAL), came a-knockin' on my hospital room door.  She and her sisters had spent that afternoon decorating a beautiful (and delicious) red velvet cake with a giant purple flower and Olivia wanted to share some with P and I.  We knew of each other before and by some sick stroke of...luck, yes, I will say luck, were on the same floor at MD Anderson, in rooms across from one another, at the same time. You see, for those who don't know, Oliva's family, through some strange twists in the universe, is very friendly with my extended family, the Romans. My Grandma Roman taught several of Olivia's Aunts and Uncles. Olivia's cousin was my cousin's confirmation sponsor. Our Aunts are great friends. The odd thing is that it took both of us ending up at MDA (and a facebook connection through Craig Brandmeier) to find all of this out. Her Aunt Lizzie has been amazing to me and my Mom and it really felt like little, sweet Olivia was family. 

She fought so valiantly, with so much courage, through more than I could ever imagine anyone enduring, let alone someone of only twelve. She was determined. Her family is amazing, it is no wonder. There is so much love and support between them, they are inspiring. I am so thankful to have had the opportunity to sit with Olivia a few times, chatting about Glee (she had the coolest Glee poster that was signed by the whole cast, she was so proud of it!) and sharing pictures of our pets (her little Sassy and my two nuggets). Her hospital room had been converted into a warm, PINK, comfort zone, her ever-dedicated mom and sisters decorated every inch of it. I recall that she had some awesome nail art painted onto her delicate hands and toes too. (Guess what Olivia? I painted mine sparkly pink with flowers and jewels last night, just for you). When I say that I was and am still inspired by her, I truly mean it in a way that she will stay with me forever.

Rest in sweet, comfortable, beautiful peace Olivia. You touched so many and I feel so, so blessed to be one of them. You were a warrior. I think Hit Girl would be proud. To the Jones and Fraijo families: We are wishing you comfort and peace in this time. There is so little than can be said. You have all been so wonderful to us, please know that Phil and I are keeping you close in our hearts during this time. Your Olivia is now a shining angel.
So much LOVE.

If you aren't already a member, please go to to register to save a life. 

Wednesday, February 23, 2011

Three in the Freezer, Two on the Bed

Today has been a bit of a mellow day, a little bit of an ouchy day as my hip gets to work a-healing. In Houston I was told that walking, standing, dancing are all good things to do when healing up from a BMB (sounds counter intuitive, but it's true!), unfortunately, I don't have the energy to walk and dance circles around my apartment all day.  Don't get me wrong, I've done quite a bit of booty-shaking today, but at the moment, I just kinda feel like resting. Who is gonna keep me company though? Well, while P and I wait to defrost those three little freezerbabies, we have two furbabies to keep us busy, entertained and comforted. Meet my kiddos:

This is Hope. Hi Hope:)
Hope came to us from the PAWS animal shelter two years ago. We went in a few days after I was first diagnosed with CML to rescue a kitty that would hopefully keep my company on the bad days. We had plans for her to be a lap cat...if you know Hope, you know that this picture is a rare one and that Hope as a lap cat is laughable. She gave us hope, so she was named as such. While she turned out to be uh.....less than snuggly...for the first year she lived with us, now she's a total cuddle muffin, in her own way. AWWWWWWWW. (Yeah, she's totally as soft as she looks. Doncha just want to smush your face in her tummy?)

This is Ike. Hi Ike!
Ike came to live with us a little over a year ago when he was a teeeeny tiiiiiiny kitten. A teeny tiny kitten FULL of personality, for sure. He was abandoned in a driveway and came to us through our dear friends, Sue and Brett. Ike earned his name because P and I were so thankful to Sue and Brett for bringing the little booger to us at, what turned out to be, a time of uncertainty in our lives. Sue and Brett's band is named IKE. Also, when he was still a baby, he had these long gray tufts of fur that stuck out of his ears and on his chest that gave him the look of a very mature older kitty. He is just totally an Ike, though he responds mostly to Dude:)

While in Houston I missed these two desperately. When I was in the hospital, I would lay in bed, close my eyes and picture that they were curled up at the foot of my bed. It calmed me.

So, on these kinda of days, though I'm not thrilled about being a little lazy, being surrounded by purring fur is pretty awesome.  You know what else is awesome? This guy's cat:

Whenever I've needed a pick-me-up in the last week or so, these videos are a fantastic standby for a smile (or a gut-busting, tears streaming down my face fit of hysterical laughter).

Much love, friends:) Here's hoping that you too have some one (furry or human) to give you snuggles when you need them.

Tuesday, February 22, 2011

Beware: Awesome Picture Ahead

Two posts in one day? NO! :) I know, so unlike me lately, but you know what, it feels good to want to write, so I'm going with it.

Because I have pain meds in my system, typing is....uh...a little more difficult than usual. It's taken nearly two hours for me to focus enough to type this much. HA!

In a nutshell, my appointment today went well. My WBC is up slightly to 1.1 and my ANC is a more comfortable 600, all of my other numbers are great which is all terribly boring compared to what I'm going to show you now. For the faint of heart reader, turn back now.  There isn't anything awfully important after this sentence, just awfully awesome.

That is a hunk of my hip bone. (dramatic pause for reaction). More specifically, my husband holding a hunk of my hipbone in a little plastic container. Believe me when I say that this hunk was actually much larger in person, it is on it's side in the picture (which I begged P to take). After Dr. Porter expertly extracted this from my body, he asked if I wanted to see it (um, how WELL YOU KNOW ME SIR!!!). Bitch was huge. There were, as always, many vials of marrow taken. Gross as it may be to some, this (seeing these things) is the only part of this stupid procedure that I kind of enjoy. How cool is it to see your own bone and marrow in a non-trauma situation? Pretty effing cool.

Of the many, many bone marrow biopsies I have had over the last two years, this was the FIRST biopsy where P was invited or allowed to stay in the room. If you have never had or seen a BMB (lucky you), they are, without a doubt, bloody horrible. They are craptastic to feel and I can only imagine craptastic to watch happen to someone you love. P wanted to stay and see this one and, if he's OK with that, I'm OK with that. He was totally into the whole thing, saying later that it was 'so interesting to see in person'. Thanks babe:).

In addition, of the many many bone marrow biopsies I have had over the last two years, I have learned that (much like phlebotomists) there are those that are gifted in these things and those that are....fucking horrible. Dr. Porter is, without a doubt, one of those gifted individuals. There are parts of the procedure that are inevitably painful- usually when the needle pierces the bone (you can't numb bone- this is the moment when you can actually FEEL the shape of your entire pelvis) and when the marrow is extracted (a very long and painful 10 seconds of sucking into a large syringe- feels exactly like it sounds) and the bone shard removal (do I need to explain that one?). All of the other parts- lidocaine administration, piercing the skin with the needle, removal of the needle- when done by some, SUCK. I was impressed by Dr. Porter's skill today, way to go doc!

We'll some of the results by next Friday and then, at the beginning of March, will be heading down to Houston for my 6 month (can you believe it?!?!) check up. I am...curious, stressed, anxious...about the results of this biopsy. Survivor's fear, maybe? Who knows. All I know is that right now, my hip is still achy.

Much love, friends. Please know that every day I am reminded of the exceptional group of people P and I call friends and family. These days are hard, lonely, scary. Thank you for showing me that I am not alone.

Biopsies and Sea Glass

Today, on this snowy, chilly day here in Philly, I'm having ANOTHER bone marrow biopsy. This makes nine, I believe...

As I shared a few posts ago, my white cell count has been dropping steadily since December- wavering somewhere between .8 and 1.3, and without any obvious cause. My ANC (those important little buggers) have also plummeted to unsettling lows recently (two week ago they were 254 ( which is considered severe neutropenia and is very dangerous- they have since come up to 550) , causing me to bust out the masks and hand sanitizer and return to that sucky no fresh fruits or veggies diet (plus a bit of hermit-like behavior) while I await their return to safer levels. The odd part about all of this (right, there's only ONE odd part...) is that my other cells have been growing and flourishing, something that has so far assured that there is nothing wrong with the graft. My doctor at PENN has tweaked my medication several times, taking me on and off of various drugs, as well as kept a close eye on my CMV levels, to very little effect. Because having such a low white cell count is exceptionally dangerous for a BMT patient (well, for anyone really), he would like ot give me injections of a drug to help boost those numbers. This is where the BMB comes in.

Just after my transplant, I was given, ehhhh...maybe four? five? shots of a drug call Neupogen, which, as I said, helps the body produce more white blood cells. Super helpful, no? The thing is, this drug, because of what it does in the marrow, can seriously goof up the results of a biopsy, which is NOT super helpful. In order to know what is happening with my white blood cells, I need a biopsy. See where I'm headed here? No Neupogen without a biopsy. Fun fun.

So, the plan today is for P and I to trudge through the snow to PENN, see Dr. Porter, review my blood work from today and have a biopsy done. The biopsies I've had done have not caused very much anxiety in me. I've had faith. I've had confidence. I've had abundant hope. This one? This one is kind of freaking me out. I feel...unsettled. P told me he could feel it in me. There are certainly good reasons for these feelings, but, to be honest (workin' on it), I am nearly as unsettled ABOUT BEING unsettled as I am...unsettled. When the results come in I do have confidence that there will be no cancer, but I just don't like the idea that there could be something else going on. Something sinister. Or not. Maybe it's just one of the meds. We shall see.

In the mean time, I would like to share with you something that I was meditating on last week while spending time with my wonderful Mother-in-Law in Atlantic City collecting sea glass (YES I did call my doctor for permission...I was a little freaked about the possibility of catching some sort of fungus from the deep).

As I was crouched down, carefully examining the pebbles and sand that stretched across the beach, hoping to discover those illusive specks of tumbled and colorful glass, it occured to me how similar the human life cycle is to that of a shard of sea glass. The search became a moving meditation, so much a yoga practice. We all begin sturdy, yet empty. Different shapes, colors, sizes. Then spend our lives being filled and emptied (and filled again maybe), serving a purpose (maybe not a bottle, maybe a lamp on a ship, a light on a boat, stained glass from a long-gone sea-side chapel). At some point in our lives we find ourselves, in any number of fashions, tossed, tumbled, broken, drowned, laid out in the sun, dragged back into the fray, rolled in the muck and mire. At the end of all of this, we have the opportunity to emerge changed. Softer than the shard we went in as. Pitted, yes. Rougher, maybe. Maybe smoother. Maybe the chemicals in us react with the chemicals in the world and we change color. Some colors, like people, are rare. All shapes unique. Some glass is hidden for hundreds of years. Some is created right where it began. Some travels thousands of miles to find you. In the end, we are all the same, but different.

Those gems we found, Peggy and I, helped me to remember that through pain and fear, the world is a beautiful place. There are small beauties to be found and treasured, even on the sketchiest of AC beaches :). My small jar of finds is sitting in a sunny window. It is beautiful. This life is beautiful, scary, sad sometimes, but so beautiful. I needed a reminder of that reality. A reminder to be thankful for the rough ocean that has the ability to turn out such beauty.
My treasures from the day. Click to enlarge if you like, there are some cool pieces in there!

If you could, dear friends, send some mellow juju my way today. I much prefer your juju to an Ativan:) Thank you, so very, very much. Always.

Much love, Philly and beyond. Anyone up for a snowball fight, by the way?!

Sunday, February 20, 2011

Blogger Stats

Because I am in no sort of emotional state right now to write how I'm really feeling (yes, denial is not just a river in Egypt), I would like to say three things about what I've seen popping up in my Blogger Stats (lets me know my hits, sourcing sites and google searches which lead to my blog- also, I have readers in Russia?) over the last few days.

1) Sarah was so, SO loved. If you are reading this blog because you googled her name and found my writings about her, I want you to know that I am humbled by that.

2) To the person who googled "ichy rash from eating blueberries" and then found my blog: I hope you didn't get scared silly and stay up all night terrified that you have leukemia. You probably don't. Go see your doctor and stop googling, though.

3) To the person who googled "feeling in the dark about bone marrow transplant": I really, really hope that my posts have helped you somehow. That maybe you're a little less in the dark. You have a friend in me, you are not alone.

This week has been intense, sad, inspiring and uplifting for both P and I. Hopefully I can find the calm to write more intimately.

For now, Much Love to you. And I really, really mean that.

Tuesday, February 15, 2011

Shine Bright, Dear Sarah

With a heavy, heavy heart I share with you that Sarah Chidgey Hughes is making her passage on to the other side today. Her husband assured that she is, indeed, enveloped in love, surrounded by her dearest and that she is using her last breaths to say the words 'I love you'.

My heart is broken and my tears flow for her, for her new husband, for her family and large circle of devoted friends, for her students. She was faithful and above all, GRACEFUL until the very end. Never dimmed. The beyond will be, whatever that is, certainly more illuminated and warm this night with Sarah's spirit there.

The last time I saw Sarah was in November in clinic. She was walking with a cane and wearing a huge smile. We paused and talked delicately about the journey we were on. I remember her smiling and laughing. I remember her beauty, even through obvious pain. Her video posts were mostly positive, uplifting and occasionally raw. She stayed steadfast in her faith and love for God until the end. It is a certainty that she was granted comfort and abundant peace.

Sarah, you taught me grace through pain. It took me a long time to see it, but when it reveiled itself, you were there, always hopeful. Always saying 'miracles happen!'. The community that surrounds you and your dear husband is the stuff of magic, the kind of collection of souls that can only congregate around a really worthy center, YOU. They have held you and will continue to hold you. Sarah, I pray for you freedom from pain, a perfectly restored body and peace with your maker. That you watch your loved ones and wrap them in your luminous arms.

You are going too soon, dear, but your message that you've left behind is the eternal one of love. I am humbled to have known you and find myself changed a bit, softened, by your steadfast grace.

Much love, peace and comfort to the Chidgey and Hughes families, to her abundant friends, to her devoted husband Eric.

When the summer heat returns and the fireflies begin their nightly show, I will always think of you, Sarah. Shining bright.

Friday, February 11, 2011

Mysterious Dissapearing Post

Ghosts have invaded my blog.

They have hacked in here (do ghosts have to hack? or do they just kind of...pooof?) and have removed the last post I (thought) was posted here late last week and buried it back in my saved posts folder. Um, or maybe I hit 'save' instead of 'post' in an Ambien stupor. Let's go with the ghosts, mkay.

At any rate, I want to give the most important bit (the bit that I am mortified was NOT posted when I intended) of the haunted post while I work on editing (updating) the missing one. I wanted to write something to express my deep gratitude to everyone who came out to the Cupcakes and Rock n' Roll benefit two weekends ago. An especially large thank you to Sue and Brett Talley, John Faye, Brittany Rotondo,  Mariano Mattei and everyone (there are certainly many names I am missing) who attended,  organized, donated and helped P and I. The event was fantastically fun and we were so grateful to be able to be there. Seeing all of your faces there; friends, family, acquaintances, friends-of-friends, strangers, all rocking out and enjoying some fabulous cupcakes (THANK YOU to Philly Cupcakes, Lily Cavanah, Sue Talley- YUM!) was amazing. Gratitude, thankfulness, love...well, like I said that night, words can't explain it. Thank you, your generousity helped P and I book our flights and hotel for our trip back to Houston in March ( no worries! just a check up!). So much love to all of you.

Also, thank you, really, really thank you to you who reached out after my last (public) post. Thank you for reminding me that I'm not alone and for easing my fear about having those things out in the open. Love to you too, you opened the curtain and let a little light in. So, just, thank you.

In other very fast news, while I am feeling stronger and a bit sunnier (smiles are more common in this house as of late, it ain't all roses,'s a little better), my white cells have been dropping steadily. At the moment they are resting at .8 (that be LOW) and my ANC (infection fighting beasties) is at 700, meaning that I am on extra-super-duper-precautions at the moment (MASKS!). My onc at PENN (whom I ADORE) assures me that they do not think there is a problem with the graft (donor cells), rather, that I either have a stealthy virus or this is the result of one of the trillion meds I take daily. At the moment I'm feeling a little draggy from the med adjustments to try to figure out whats up, but I'll take draggy over failing graft. He also insisted that I "not be a hermit, just don't go out in crowds and WEAR A MASK", which I really appreciated. He understands where I've been emotionally lately (the dumps) and his advice really made me feel a little safer. Thanks Dr. Porter:)

Finally, I'm obsessed with this song and I really want to share it with you. Please excuse the weird YouTube video, I don't know how to post just a song.

Before I end this post, may I make a prayer/intention/energy/thoughts/love request for an acquaintance from Houston whom I have written about before: Sarah Chidgey. We met in the IV clinic the day we both had our CVCs placed and spent a long while talking. Sarah has stage 4 lung cancer and is in need of spiritual comfort and support now. We are nearly the same age. I will not presume to write about her situation here because, well, it (selfishly) makes my heart ache too much. Her (very powerful) blog can be found here:

Much love, my dear, icy, windy, snowy, omgthelightisreturning Philly and beyond.