Monday, March 21, 2011


 Early this morning (7:30 am, not a morning person) I got an infusion of IVIg because my labs at MDA two weeks ago showed my levels were low. In a nut shell this means that I have low levels of  immunity in addition to struggling to keep my WBC up.

If you remember, sometime in November I got an infusion of this drug (? I don't know what to call it, it's actually sort of a synthetic blood product), with very little fan fair. The first half of the process was basically the same today, until...well, I'll get there. It went a little something like this:

(BTW: PENN's new Perelman Center for Advanced Medicine has nicer infusion rooms than MDA. Big windows in every room looking out over the city, big comfy recliners and televisions that work.  Just sayin'.) 

Insert peripheral line in my wrist (because I DON'T HAVE A PORT!). Draw labs.  Premeds of Tylenol and Benedryl, which knock me out. Start IV.

Yeah, well.

Apparently IVIg can cause nausea and vomiting. Who knew.

About 45 minutes into the infusion I had that sensation. You know the one. Like, "Am I hungry or am I going to yam?". So, unwilling to potentially puke in my infusion room or on myself, I stumbled down the hall into the restroom (which looked EXACTLY like the ones at MDA, very freaky), and....well, you know the rest. Afterward, I alerted my nurse and was totally impressed with the absolutely rapid response from three different nurses and two nursing assistants. My infusion was stopped, the Dr. was paged, fluids started. They even gave me a toothbrush.  Dr. Porter ordered Zofran and an hour later the IV was started at a slower pace, which meant that instead of being done at noon as scheduled, I was done after 3pm.  Oh, because I'm an over sharer like this, when the nurse removed my IV, I squirted blood everywhere. A year ago this would have totally freaked me out. Now? I was impressed at the distance I managed, shoulda measured it. The nurse didn't even notice.

Seems I've forgotten how absolutely tiring these infusion days can be because, when P got me home, I passed out in bed until an hour or so ago. As I type this, I am beginning to nod off again.

Good news? This kind of stuff is worth it because it keeps me healthy. Which is a good thing at the moment because I'm starting to feel like I've caught P's cold...Come on WBC (8.8 today...woo!)!!!! Go! GO! GOOO! Mamma's got a harmonium lesson at the end of the week (!!!:)!!!!).

Anyway, the most important thing about today is that it is my girl Maggie's Birthday. So,


Thank you for always being an amazing friend. You are such a bright, bright light.  Hope you had a WONDERFUL day, you've made so many of mine so. Love you girl:)

Much love:)

Wednesday, March 16, 2011

Pictures and Pain (or iPhones are extremely useful)

For your visual enjoyment, here are some pictures from Houston and the last few days courtesy of my iPhone.

Rodeo, YO.
We caught the last half-hour or so before the concert. There were 8 year old kids competing to see who could hold onto a charging lamb the longest. Pure Awesome.

Sarah D., P and I (yes those are Mardi Gras beads). Sarah is responsible for properly outfitting me in a hat, belt buckle and reminded me to bring my cowboy boots. P has some great pictures on his phone of Keith Urban, gonna need to get those from him:)  
This may not look that bad in photo form, however, I assure you that this SHOULD NOT look like, or feel like, this after a simple blood draw. Believe it our not, I still have 'good' veins, which are no match for a bad phlebotomist.    

 Neupogen Nonsense

Yo, neup: thank you for being so darn useful in keeping me healthy but a big screw you for making me feel like I've been hit by a truck. :-)

Warming the chilly syringe. Yes, please admire my nails.
Yowch, yeah it's actually not that bad, the needle is pretty small. OH, and what is that I see? Some muscle forming on my shoulder again? mmmmhmmmm
So my poor, sweet hubband earned himself a nasty sinus infection from the flights to and from Houston. Because I have...uh...NO immune system, and I married a damn stand up man, these have been our sleeping arrangements since Friday night.
At least the inflatable mattress FITS and is kinda comfortable. Doesn't he just rock?

Yesterday ended up being a bit of a clusterfuck after I received a phone call from PENN in the morning (as I was heading out the door for yoga, no less) informing me that my WBC had dropped again to 0.7 and my ANC was UNDER 100. Hit the panic button.....NOW. I needed another shot of Neupogen, and would likely need one every day this week, all I had to do was get to the clinic. Right.

Many of you may not know this, it's always surprising to those who don't know, but, I do not have a driver's license. Maybe someday I'll explain why not, but at the moment it doesn't matter because I wouldn't be allowed to drive anyway thanks to some of the heavier meds I take. SOOOOO this means that in a last-minute situation, I have to call everyone on my contact list to find a ride. This, though rare, is both embarrassing and frustrating. My Dad ended up leaving work to take me, which I enjoyed because I don't get to spend one-on-one time with him often, and I got my shot. I made it ::ahem:: clear that daily trips to PENN this week would be exceptionally burdensome to my friends and family due to the short notice. The solution? I was given pre-filled syringes to administer to myself at home (hey, that injectables training during IVF last year has really come in handy!).

As I mentioned in my last post, the neup can cause bone pain, fatigue and headache (flu-like symptoms). Somehow I managed to forget what that feels like (probably because the last few times I have required this drug, I've otherwise been very VERY ill), so the last few days have been exceptionally uncomfortable. Last night, with my sternum and pelvic bone both pulsing in pain in time with my heart beat, I graduated from uncomfortable to goddamn SCARY. After hours of tossing and turning, worrying if there was something wrong with my heart or something, I busted out the Google machine and was reassured that this sensation is common. The pelvic bone, particularly in the back on the illiac crests and the sternum, are bone marrow producing powerhouses in the human body. Hence the excruciating pain.

Some time around 5 am,  I begged P to come rub my back and he reminded me that I could try a Motrin to help with the pain. Uh, duh. After more than two years of Motrin etc. being forbidden, I often forget that I may use small doses now (because I have platelets STRONG LIKE BULL). Darn it if that didn't do the trick (a Xanax helped immeasurably too- P knows me too well, pain=panic for me). Today, though feeling a tad sluggish, I feel a bit better. Somewhere around 3 this afternoon I gave myself my next shot and here's hoping that each shot becomes easier. I feel the throbbing in my back, but I'm ready to deal with it!

You know what helps? This:
When I came home on Tuesday I was already feeling crappy. This one snuggled herself up against me. She's been glued to me today as well, even waking me this morning with sandpaper kitty kisses. What a cutie (just wish she didn't snore so much!).
Something I forgot to add when I wrote about the results from the testing in Houston is that I am now officially on an itty-bitty dose of steroid! 4 mg EVERY OTHER DAY! P looked at me a little while ago and said "your face is skinnier already". Thanks babe:) In many other relationships that could have earned a smack, he got a smooch for that one.

Thank you, dear friends and readers for sticking around and also for your messages on my last post. I am so grateful to all of you for your uplifting words and for making me feel a little less alone.

Much Love (and a Happy St. Patrick's Day! Someone have an Irish Car Bomb for me, eh? None of that green beer nonsense ;) )

Monday, March 14, 2011


Neupogen shots, though ever so useful in keeping me from getting a horrible infection, cause my body to explode in pain. Seems I forgot about this little detail. The last time I had one of these I was so banged up on other poisons and a rawkin' fever that I didn't know up from down.

Typing this hurts. Thank the great spaghetti monster that this will only last another day at most. Saturday night I had the worst headache I've had since...well the last time I had a Neupogen shot. Friday my pelvis was on fire and I almost puked in Suburban Square, in front of the GAP and my good friend Karen. Right now my muscles are aching like I ran a marathon.

I have a post half-written detailing all of the cool things that happened in Houston. Will post when my nerve endings calm the fuck down.

Friday, March 11, 2011

Quick Update

Aaaaannnddd we're home and given the atrocious weather here in Philly, at a sane time.

I will give a quick update tonight but am excited to share some awesome pictures from the last few days.

The rundown:

My white blood cells don't exist, or very very barely exist. Thus, I have been taken off of one of my drugs (valcyte, if anyone cares), switched to valtrex ( NO, I don't have the herp, it covers viruses. jeez). I also get a Neupogen shot 'for the road'. It hurt like hell, I feel a little flu-ish and have some bone pain to potentially look forward to, BUT , how cool is it that ONE shot can just ::BAM:: fix my WBC? So cool. Science is cool.

I am officially O Negative. My donor's blood type. That, my dear friends, is some majorly amazing shit.

Tomorrow I'll upload our pictures from the Rodeo and my Neupogen shot (because I think it's COOL) and share some other stuff. Thanks for continuing to read, whoever still does. Writing here and having a forum to share this journey is some of the best medicine. Thank you friends:)

Much (soggy) love y'all:)

Thursday, March 10, 2011


Today is Ash Wednesday, well, at least it still is in the Central Time zone.  Ash Wednesday, having grown up Roman Catholic, is one of the few holy days that I have nearly always observed. I can count on one hand the number of times I haven't received my ashes and maybe attended mass on this day. Today, P and I both recieved ashes at the chapel at MD Anderson.

As I have mentioned before, I have a very complicated spiritual life, one which I don't fully understand and one which evolves and changes. This is not to say that I am lazy in my spiritual beliefs, I feel strongly spiritual, however I do not, or have not yet, found a doctrine or organized religion that completely satisfies my needs. Though I do not identify completely as a Catholic, or completely with any single religion, there are a few staples, completely unrelated to doctrine of any sort: yes, I do believe there is something greater than we, a something that has no defined form but can be called by various names, God/ the Universe, even various gods, goddesses and saints (which I view as good and desirable traits or even needs, personified) are often where I go. I also believe that there is a life after death. Is that a clouded, blue heaven? I don't know. That image is comforting. Does it mean that those we lose are with us in some breathe of air or tingle down the spine. I still don't know, but that image too is comforting. Maybe we even just become absorbed back into the energetic fabric of the Universe and our real life after death is that we live on in the impressions, the ripples, we make during our living days.  If we are horrible to others, do we go to a blazing inferno? No idea, kinda scary, or is there even a punative nature to the universe? I believe that we are given the gift of both free will and the consequence of a conscience. That goodness is in all of us. That bad things happen because, well, bad things happen. Chaos and order rule our movements and that we are all, beyond a shadow of a doubt, connected.

Why do I say all of this? Well, coming back down here dropped me square in the middle of the dark nightmares that have haunted my nights for the last three months. I am reminded of my fears in a very real way. I am also reminded how god damn mother fucking LUCKY I am to be alive. And doing so bloody well. This is the ultimate reality check. Yo, Laur, you can sit on the floor of your bedroom, crying your eyes out with two very concerned cats, because you gain a couple of pounds from the steriods and your stupid jeans don't fit correctly. OR you can look at and REALLY reflect on how trivial that meltdown is compared to the tears being shed by other patients here. Other friends. Nothing like coming to a cancer center to get a better perspective on life, no? I'll answer that for you: no. Except maybe if you visited as some of our armed forces say goodbye to their families before being sent for war. That's a damn good example as well.

At any rate, receiving my ashes today, hearing those words "from ash we came and to ash we shall return" and wearing that symbol of remembered mortality, felt correct. Felt healing. This is divine and temporary. It can be very easy to spiral upwards into  the 'rah rah cancer survivor/warrior/battle' mentality. Don't get me wrong, I'm all for a little cancer war (been there, NOT going back), but a reminder, a grounding, reminder of humility and humanity was...well, perfect.

Aside from my ramble on ashes and my spiritual voodoo, my testing today went well.
7:30 am (yeauuuuggghhhhhhh) Bone Density Scan: apparently I have exceptionally strong bones, which is highly shocking considering how hard these doctors have tried to bust 'em up (chemo, sterioids, etc)
9 am blood draw: 13 vials. 'nuff said
10 am Pulmonary Function Test: not a damn change in that 'Hospital Pranayama Test' since last May. I got's me some big ole honkin' lungs

Ashes and a prayer


1:30 Survivorship Nurse: made me wait 2 hours (in the meantime I had a real panic attack in the waiting area listening to the horrors of another patient, I had to excuse myself, take a pill and return to the opposite side of the room), then pretended like she had been looking for me. I was sitting in front of the access doors the whole time. MMkay. In a nutshell: my PTSD-like feelings are quite common keep handling it as I have but don't be afraid to ask for more assistance if I'm really losing it, I need to see an OBGYN about my ::ahem:: fucking menopause, aaand I got a shiny new booklet on how to eat like a normal human (i.e. did you know they have this thing called a food pyramid?! that fruits and veggies are GOOD for me? seriously?).

P and I just returned from dinner with my dear, dear friend Sarah Doyle and her family. Sarah has been such a light in this journey, I am so proud to call her friend. We went to Rodeo Houston last night, my lord I can't wait to post pictures. There were belt buckles and hats a'flyin:)

Well, dear friends, or those of you who didn't jump-ship as soon as I started babbling about religion, thank you for the support these last few days. I can't wait to blow this taco truck and head on home tomorrow night, but not after checking in with Dr. De Lima first!

Anyway, much love y'all


Tuesday, March 8, 2011

Back to Houston ::sigh::

"Sort me out" is one of those wonderfully British sayings that should be officially inserted into the American vernacular, like, now.  This post is going to be delightfully un-sorted (de-sorted? whatever). Lets go with steam of consciousness, shall we?

Tomorrow morning (this morning? jeebus it's 1:30am) P and I are heading back down to Houston for a few days for my SIX MONTH checkup. Six-friggin-months. Amazing. And terrifying.

Ativan has been a friend for the past week or so. For all of the pranayama I can puff, it's times like these that chemicals are the best solution. On Friday I received the first portion of the results of my most recent BMB from Dr. Porter. Let me tell you that in the two(plus) years of this nonsense, THIS biopsy had me the most unsettled. The results were pretty good. Turns out that my inability to produce white blood cells at the moment is, in fact, due to medication NOT disease. Thank flying spaghetti monster. My doctor asked what I was so afraid of with this biopsy...I couldn't even say it out loud. I won't even type it. I have confidence you can probably figure it out. It will take another few weeks to get all of the results from the other tests which tell all sorts of wonderful things, most importantly if there are still any cells with the Philadelphia Chromosome hanging around. The good news is that (well, there's always good news), as soon as we return from Houston, I can stop taking the drug that is doing this to my marrow and get a few shots of Neupogen, which will (should) fix me right up. To say that I am looking forward to this would be...well, inadequate. Once my white cells recover I will have a life free of fear (kinda), for the first time in MONTHS. The countdown to that stupid needle has begun.

Last night P and I got to talkin' about how we were feeling about this trip back down to the Lone Star State, about our shared anxiety and sleeplessness.  I was surprised and saddened when he said that he felt the same intense anxiety I feel now, every time he went back and forth.  That just about broke my heart. If you know my husband, please give him a pat on the back, or hug (if he'll allow it), or high five for being so damn awesome. Sickness, pain, horror, fear, loneliness, sadness...these are the things that exist in Houston for us. (Except for my friend Sarah D., we are excited to see her). It feels like we're stepping back in time to those months of horror.

Tuesday we're flying down to Houston and meeting up with Sarah D in the late afternoon for the RODEO (uh YEAH!!). Wednesday brings testing and meetings all day- I'll update then. Finally, Thursday we see Dr. De Lima. Though I know, just KNOW that everything is OK, I am absolutely the most anxiety ridden I have been in a long while. I am so full of fear. So full that I keep picturing that the fear and anxiety is this thick oily fluid that is filling me like a glass (in my mind it's a pilsner idea why) and that it's beginning to overflow and run down the sides of me. It's horrible. I've been working with this image of someone (maybe me) scooping out that goop with their hands and throwing it away with a splat as it hits something satisfying, like a wall maybe.

At any rate, please if you can, send some good juju our way, some calm cool peace. Thank you for your messages of support and love, especially Mrs. Magdy's 2nd grade class (I can't wait to do a post on that).

The ativan and ambien are starting to make me feel like this:

so I'm going to get my tush to sleep.

Much love Philly, I can't wait to get this over with and come back home to you.

Wednesday, March 2, 2011

Brand New 'Do

After a terrible night last night, I decided to take life by the balls today and do as many things as possible to make myself feel good.

On-Demand belly dance classes? Yup.
CrunchFitness Burlesque DVD? check.
Loooooong walk, in the sun (SPF 101, no lie) with ipod blaring? Uh huh.
Bust out my purple-zebra-print scarf? Yerp
Application of bright blue eye shadow to match scarf? Hells to the yeah.
Hairstyle? Aw, fuck.

My hair has been growing like weeds lately, which has actually given me to ability to ::gasp:: style it. I generally opt for the 'hawk...everything else makes me look like a) Mr. Shu or b) Phil. Unfortunately, the back was getting silly out of control. Every time I've tried to comb down the sides and back of it, these little flippy tufts of hair would stick out at the bottom and up the back, giving the suggestion of a half-assed mullet. Not a good look. So I walked down the street to this little hair salon called Joyce's Hair Fashions and asked if they could trim me up. And trim me up they did, and quite well if I do say so myself. The three stylists in there were so, so nice, really great to chat with. They unexpectedly, and very generously, comp'ed my trim so tomorrow I think I'll whip up something sweet and yummy and drop it off as a thank you. If you live in this area and need a trim, pop in there. Ask for Kathy. They were great:)

You know what? All of this really made me feel better. Tired, a little sore, but much better. Especially the hair part. Going by myself for my "first" haircut was empowering. I shaved the first hunk of hair off of my head six months ago, it felt right doing this alone today. This morning, the hair on my head was the style that the chemo decided it should be. Hair frizzed out, thin, thinking about being curly. It didn't reflect me. Now, it kinda does...and I kinda like it.

Much love:)

This is not a chemical romance

Tonight is one of those nights where I wish I could just double my sleeping pill and check out until tomorrow afternoon (No, I will not do that). These nights come sometimes... less frequently in the last few weeks but arrive none-the-less. Always without warning. Always highly miserable. Nights where the chemicals take hold of my body and no breathing, no distraction can remove their effects. Nights that always bring me back six months to that room on the corner of the 9th floor.

My gut is rumbling an angry, medication-induced rumble, both unsettling and painful.

My heart is racing at a panicked clip but my mind is foggy. A drugged-up panic and fear.

There are tiny electric shocks rippling from my elbow to my wrist and from my knee to my ankle, then wrapping around to settle on the heels of my hands and the soles of my feet. Sometimes, not now (wood, go knock on some) they ignite my toes.

I've been having a hot flash every twenty minutes for the last four hours. Dripping in sweat. These alone come nightly, a reminder of my stolen fertility. There is no telling if this is real or temporary, you know what I mean.

Though the day was pleasant, tonight I am angry and uncomfortable.  These are side effects that are quite common, which infuriates me.  How many others are out there, laying in bed right now feeling this? These medications are brutal. Inhumane. Miracles. They preserve my life and I should feel thankful, but I do not. Not tonight. Not now. Maybe tomorrow, maybe next week. Not in this moment. They play with my body, they disturb my dreams, bringing horrifying nightmares. I just want health and rest. I just want to cry.

Maybe if I do they will be washed more quickly from my battered system...

Tuesday, March 1, 2011

Hair Gel wishes and Cabaret Dreams

Have you ever thought about the life you would live, the thing you would do, if NOTHING could stop you?  A fantasy life. Something that is an expansion on something you already do, or something that has nothing, and I mean NOTHING to do with your current life? I have several of these fantasy lives and nearly all of them have something to do with the life I already lead. Lives that could become reality with some hard work, a few classes, another degree, a stronger immune system. Yet unrealized realities.

There is one fantasy I have though, one that I have entertained for years, gilding it in my mind and in my dreams. Turning it over, tweaking parts of it, changing the era. That fantasy, today at least, looks a little like this:

 CABARET my friends! It is the perfect fantasy for me, especially right now. Belt out music, like really from the gut belt it out. It's sexy (a quality I'm severely lacking these days). It's brash. Unapologetic. Glitzy and gritty all at once. Empowering. Moving like that, singing like that, dressing like that....the hair, well, I've got that half covered. Damn it, as soon as this fluff gets long enough, I'm going dark again to rock the Liza.

Some days my fantasy looks a bit more like this:

Miss Dita, oh yes. That ain't no yoga teacher:) Totally...TOTALLY different from the life I lead. That strong feminine energy. Just as empowering. And, my god, that HAIR. Just before I shaved my head for transplant, I dyed my hair completely black AND I LOVED IT. Every single day I curled it and styled it, wore full make up, went vampy (glittery but certainly not of the twilight persuasion). I miss that. Mostly for the ritual of it, wigs can give me the look

Why am I talking about this? Well, a few reasons. Last Friday I had the opportunity to attend a belly dancing workshop with an acquaintance from High School. I've never done belly dance before, African, modern, a little ballet yes, but this was totally different. It was amazing. It was SO. MUCH. FUN.

As much as I know that what shows on the outside, these changes to my appearance, haven't change WHO I am, in some ways, they have. I've had to reach inside and examine what makes me feel like a woman when I hardly have hair enough to style, when I'm feeling the effects of menopause, when my face is still puffy. Moving that way felt so.....womanly.

Yoga brings peace, calm, a moving meditation. Each pose stretching and pulling me back into myself. Each breath filling me with life. Aligning me with the divine, reminding me of the divine. This dancing felt like I was shaking the fire up. A fire that has been out for a long while. Yoga makes me human, this made me feel like a woman.  Apparently this teacher offers weekly classes, I'm thinking this would be effing fantastic. I felt happy that night, I haven't felt really, really happy in a little while. An added bonus? If I closed my eyes and moved, I felt like I could see myself in spangles, on a stage...that good ol fantasy.

Much Love:)