Wednesday, September 29, 2010

One more thing

Thanks Mom. I love you:)

When written word doesn't cut it

Writing these last few days has been excruciatingly hard. I couldn't find the honesty in my words so I decided to turn on the camera and talk. Just tell you what is in my heart. These are quite long, almost an hour in total. I'll understand if you don't watch them. It was just the best way to share my heart with you right now. Missing you all and feeling SO MUCH LOVE.

Saturday, September 25, 2010

Imerging triumphant (and itchy) from the great fever dabacle of 2010

Sorry for my mum status this week ya'll. Trust that if I could have written anything other than
'adlksjaeorieew0900 droooolll da;lfdka8r902[asdjfakl cupcake?cjakl; cajklda;sfoewruioowaerjkds;lkajsdf ITCHYMOTHERFUCKER GET OUT OF MY ROOM!"

I would have. Although methinks that would have made a great entry.....

Here's the down and dirty on whats been up the last uh...week (some of this is redundant if you've read my post from several days ago):

I was taken to the ER with a fever (101.2) on both Friday and Saturday nights last week, the first of those two nights (Friday) I was sent home when the fever broke. Saturday night the fever spiked higher and brought a serious sense of 'uh, this don't feel so good in mah body....something in't right..." and I was admitted to good ole G9. Also, my mouth exploded into what felt exactly like mucositis all over again (but didn't look like ANYTHING except that my lips were swollen, weirdness). They started pumping me full of narcotics (thanks intake nurse for battling the on call douchbag uh doctor to finally get me some relief here) and antibiotics. On Sunday I waited around miserably for the 'audlt service' doctors (i'm no longer being treated by the peds doctors even though i'm on their floor) to come in, shrug their shoulders and tell me that my blood cultures hadn't come back yet but that they have no idea what is going on. Mmkay, cool. I slept and cried like a wimpy kid for the rest of the day.

Monday rolled around (after a hellishly feverish night) and yay! Happy Birthday to me:) Thank you EVERYONE for the cards and gifts and videos and love you remind me of the REALLY important stuff: love and friendship and loyalty. If I may say so, one of the brightest lights this day was the huge envelope of cards from my students at Chestnutwold- tears of joy for the first time in long a while. Thanks C-wold friends for taking the time and energy to put that together, it was a very special thing:) A big box of gorgeous cupcakes arrived from T.B., J.B. and little cutie H.B so a HUGE thank you to them:) MMMMM cupcakes.....!!!!

Funny story: because of feeling generally shitty thanks to whatever was in my system, and the gross effects of the antibiotics and antifugals  and unable to eat properly over my monster lips, I hadn't had any real food in about three days by my birthday. You probably have felt that "omg I neeeeeeed to eat but I freaking CAN'T KILL ME NOW at some point in your self, and know how uncomfortable that can be, so I figured enough is enough and requested something to help my appetite. THe nurse started shaking the doctor-god tree and this is what came down from upon high "Oh, she can wait at least another day, let's see how today and tomorrow goes and then we'll try something." UHM WHAT. You should have seen the nurses' face when she came in with that gem. As calmly as I could I let her know that that answer is not acceptable and to please see if there is anything else she can do (I always feel bad putting the nurses in this position but if the doctors would pull their heads out of their golden asses and strap on some sympathy we wouldn't have this problem). She hurried off and a half hour or so later showed up with Megace (there's the real spelling!) to stim my appetite. IMPORTANT NOTE TO DOCTORS: Pain, hunger, inability to sleep, effects on bathroom habits and extreme fatigue are NOT CONDUCIVE TO HEALING YOU SADISTS. GET OFF OF YOUR MEDICAL PHILOSOPHY HIGH HORSE AND TAKE THIS ADVICE:

K? k.

The next few day or two were pretty uneventful (read: me sprawled in bed with zero energy sweating and grumpy while waiting for them to FIX IT) except for a moment of 'oh hell no' when the idea of removing my CVC and replacing it with a PICC line (goes in your arm) came up. Basically all of my blood cultures and clear meaning there is not evidence of bacterial infection anywhere, fungal cultures take too long and they can't really test for a virus (which is what lots of this probably was), so to try to minimize the spread of phantom infection, they wanted to chop me up again. I can't quite pinpoint why I nearly lost my marbles at this idea (mostly fear) but it just didn't seem appropriate. Something like using a chainsaw to kill a gnat. That idea was nixed after I managed to keep my body temperature stable for 24 hours (whew glad for that Olympic temperature stabilizing training...uh). After one more night of hell when suddenly my skin GVHD, which has been all but gone, EXPLODED HELL FIRE ALL OVER MY BODY (I am profoundly sorry to the nursing aide who came in and turned on the lights to ask me if I had had anything to drink at 2:30 for the language that sprung forth from me, really I was an asshole and you didn't deserve that. though it was a dumb question..), they finally looked at my tomato face and scary rash boobs, scratched their goofy heads and went "OOOOOOOHHHH, this might all be GVHD" and appear to be FIXING IT! I've been given an ultrasound of my liver (whose enzymes have been stealthily multiplying and sneaking out) which showed no GVHD there, just a sassy reaction to the billions of poisons being pumped into me, and a GIANT cup of pills to swallow every night, two humungoGVHD of the skin looks like? Well, you've come to the right place because I'm an over sharer like that:

I'm not even going to tell you where that is (sideboob) but will say that yes, it hurts as much as it looks like it does. No one ever showed me a picture of GVHD that what anything OTHER than the really extreme scary stuff. This is painful but not extreme.

Also, because of the high does of steroids they have me on, my blood sugar has gone apeshit resulting in my first ever insulin shot last night. While I know this is temporary and there is nothing I can do in my diet right now to help the situation, I found that the idea of the insulin shot REALLY freaked me out. The idea of surrendering and maybe also changing my attitude a bit, has been a big adjustment this go-round. The rose-colored glasses are....tilted down my nose a bit, not gone though... and things are looking a little more like I expected them to look before heading down here. yes, these last few days were discouraging (I've don't everything I'm supposed to be doing and I STILL ended up back here?) and angering (fuck this. this is NOT fair) to sad ( I want my old life back) but I'm working hard on remember those principles and goals that I set so firmly coming into this. This is momentary and all of the above is true. Now what are you gonna do about it?

So Pappa bear went home on Tuesday and P flew back to PA last night for a few weeks (lots of crying involved in that goodbye) it's just me and Momma here for a little bit. We're thinking of some very girly redecoration to the apartment when I get sprung...think college dorm room gawdy....yesssssssss and some good old-fashion mother daughter bonding. It's looking like I'll be sprung on Sunday (maybe) or Monday (probably) AND the weather in Houston next week looks (gasp) really nice!

There have been cards and voicemails (particularly voicemails) these last few days that have helped to take me from a place of really really really scared and angry, closer home to a place of acceptance and determination. Thank you all for keeping my head on straight and helping with my little grump slump.Thank you dear friends. I miss you with all my heart and am so thankful for your steady loving presence. Much Love.

Monday, September 20, 2010

Gratitude List

On this, my 25th Birthday, there is no other way I can think to celebrate than to express my gratitude for the people and things that have helped me get to this age. Those people and things that have showered blessings upon blessing on me.  Here is my Gratitude List. One thing for every year of my life. They are not listed by number because these things cannot be ranked.

* I am grateful to my Mom and Dad for giving me life, for bringing me up in love and always being there to lift me up with advice, a smile and a hug.
* I am grateful for my sister and brother who have been best friends, worst enemies, partners in crime and always always there by my side.
* I am grateful for my husband: a strong, loving man who stood the test of "for better or worse, for richer or poorer and in sickness and in health' even before we stood up to take those vows.
* I am grateful for my Nan for her strong and steadfast love, wise advice and generous heart.
* I am grateful to my Aunts and Uncles for their love, support, prayers, hilarious cards and generosity.
* I am grateful for my cousins, first and extended, for their kinship, love, warm facebook posts, talent and ties that bind.
* I am grateful for the generations of Slavins and Romans who have come before, some I've known and many I've not had the chance to be blessed with, their gifts swell in my veins.
* I am grateful for my donor, who selflessly endured a painful procedure for a girl he doesn't know, simply so that I may have a second chance at life.
* I am grateful for my Mother, Father and Brother-in-Law  for accepting me into their family and treating me like their own daughter, with love and unending kindness. 
* I am grateful for the rest of the extended Esposto family (all sur names included) for the laughs, the love, the friendship and the feeling of togetherness.
* I am grateful to my coworkers who have become dear friends, some like family, for their generosity in time, resources, shoulders to cry and laugh on during the tough days and for the piles of cards that never fail to brighten my day.
* I am grateful for my yoga teacher and kula who have become so much more than that, so much more than just friends. You are part of my spirit and heart and you feed the lifeblood within and keep me humble.
*I am grateful for old friends (especially that special 15 year marathon BFF) who have grown into my heart like a tree grows roots into the earth and who have provided more good advice and good times than anyone deserves.
* I am grateful for new friends who have walked into my life with bright smiles and open hearts and the promise of years to come.
* I am grateful for lost friends, those who have taught so much about friendship and self and communication.
* I am grateful for the friends I barely know, those who read this blog and comment with love and support, you reach out in the same way as friends of decades and teach humility.
* I am grateful to my doctors and nurses for their expert and compassionate care.
* I am grateful for the scientists and researchers who pioneered the drugs, equipment and techniques that keep me alive.
* I am grateful for the patients who have come before me, those that pushed for better care, more answers and those whose lives taught those doctors and nurses and researchers valuable information so that I may benefit someday.
* I am grateful for the sun that shines through my window, and on glorious days of freedom on my face, for the rain that washes the air, for the wind that cools the heat, for the clouds that speckle the sky and give us something beautiful to look at.
* I am grateful for the three embryos sitting in deep freeze back in PA, waiting to someday enter this world in more love than they will ever understand.
* I am grateful for the practice, the thousands of years old practice, the newer principles, the teachings of sages and the words of current gurus and teachers who have built a foundation for me to rebuild a life and a cushion to fall back on.
* I am grateful for my students, all of my students, who have taught the innocence and wisdom of childhood and who have given uplifting hugs (even when they shouldn't) and some of the best cards I've ever seen. Miss you guys.
* I am grateful for every single card, note, e-mail, package, facebook post, video, text message, voicemail, phone call that has poured in over the last few weeks and indeed, the last two years.
* I am grateful for a doctor who was willing to drive to a lab late on a Christmas Eve two years ago to make sure that I would be able to spend a holiday with my family and who made sure I got an appointment here.
*I am grateful for the life in me. May I never, ever take it for granted.

Sunday, September 19, 2010

Back in the clink

So, after two ER visits in as many days due to a strange late afternoon fever, I'm back on lock down in the hospital for the next few days until they can get this resolved.  Tres annoying. This morning I had myself quite the pity party about it, and I would be lying if I said I'm not completely pissed off.

Why? Besides the obvious, this weekend my Dad is in town for my birthday and I was really looking forward to spending time with him. Also, and this is what has set me off again crying as I type, P and I were going to get some married couple alone time these few days while Mom and Dad 'vacationed' a bit a local hotel. And P is leaving for home on Saturday. Well, fuck. There was also some nonsense this morning with the doctors which I will save for another post.

Here's hoping they get this resolved post-haste with IV antibiotics and a big bag of ice on my head and eyes (they are super ouchy right now). There is some good news to report though: the GVHD seems to be clearing up nicely on my torso so at least I don't have to endure a feverish hospital stay AND itchy boobs. So there's that.

Thank you all for the texts and FB messages. Y'all rock my socks:)

Much love.

Friday, September 17, 2010

Is that GVHD on your boobs or are you just happy to see me?

It's GVHD on my boobs.

GVHD (graft-versus-host disease) is a very common occurrence after allogenic transplant where the donor cells recognize the host (my body) as a foreign object and go into attack mode. It can effect any part of your body, though it typically shows up on your skin or your GI tract first. Before transplant, all of my doctors (and rightly so) worked really hard to scare the shit out of me about GVHD, oh boy did the succeed in that too. If left untreated, it can get very nasty very quickly, potentially life threateningly so. There are two kinds of GVHD based on when they show up post-transplant: acute (within the first 100 days) and chronic (after the first 100 days).

In the hospital, I was told to watch the palms of my hands and my feet for the first signs of a 'sunburn-like' rash and to have P check my back every night for the same. Well, being the ever compliant patient, I did all of the above, however, where has my GVHD shown up? On my friggin' boobs and tummy (well, very lightly everywhere else too, mostly my forearms and lower back). Does it look like a sunburn? Nope. It's kind of bumpy, very rash like and itches like a motherfucker. Ladies, if you have ever been to a tanning bed and not put on sufficient sun protection (not that I've ever done and you get that itchy slightly burny blotchy rash, that's what this is like. You have to be standing quite close to me to actually see it, otherwise it sort of looks like I just have a healthy glow goin'. The Advanced Practice Nurse (this is a correction from one of my other posts, apparently she's not a nurse practitioner...whatevs) and PharmD prescribed this gloppy steroid cream and Aquaphor (which is like putting Vaseline all over your body, gross) and have assured me that this will make it go away. Weird. They keep saying that this is neither a good thing or a bad thing, just a thing that happens. Good thing it's an easily taken care of thing:) Wait, let me type 'thing' one more time. THING.

Aside from this mild GVHD, my numbers have been looking pretty stellar (and the muscle relaxers TOTALLY HELPED, BOOYA!) so I have been given today (Friday) and the rest of the weekend off from clinic. So, here I sit a bloggin' and infusin' at the same time in one of the big comfy recliners.

A little birdy told me that the weather is gorgeous in Philly right now so, dear friends, I hope you enjoy a gorgeous weekend! Thank you so much for your steadfast support and love, it is humbling and sustaining. Missing all of you so, so much.

Much love.

Thursday, September 16, 2010

Explain your sneeze!

This video came to mind today while I was waiting in the fast-track lab to get blood drawn. A man had the most gnarly cough, everyone around him looked green from the sound of his lung-gunk and I just wanted to scream "EXPLAIN YOUR COUGH!!!":)

The Importance and Responsibility of Being Your Own Advocate

TMI Warning light on. Just sayin'.

Yesterday, I mentioned the ouchy hurty parts of this healing process and chemo hangover. OH lordy did I not know what was in store for me this morning.

While I was in the hospital, about two days before my transplant, I started my period. Yeah, fucked up, I know. Because my platelets and hemoglobin were very low ( a recipe for disaster when you're bleeding for several days in a row) AND it's just cruel to have your period and chemo at the same time, my team gave me a hormone shot called Lupron to stop my cycle for that month and the following two (three months total). Awesome, right? Uh, I thought so too. Yesterday I began to notice what I thought was some breakthrough bleeding, which is expected with any hormone treatment, and while I was annoyed, it was no big deal. Well, this morning, at 5:27 am to be exact, I shot upright in bed with the worst abdominal and lower back pain I have ever experienced in my short life.

At first, I thought maybe this was some residual intestinal nonsense from the chemotherapy (something they told me could happen), but I quickly realized that this pain was very different and was very clearly NOT that kind of cramping. In all hospitals, and most doctor's offices, they use a "pain scale" of 1-10 to indicate the intensity of pain a patient is feeling, 1 being very slight and 10 being "I think I'm going to die". This morning, as I sat doubled over in the bathroom, clutching my head and dry heaving  into the trashcan from the pain, I was at an 8. That's crazy high. This was, without a doubt, the scariest pain I have ever experienced. There was no doubt in my addled mind while this was happening that I was a) going to need to go to the ER and b) having a miscarriage or c)bleeding internally and was going to die. Yes, I was in so much pain, like, contraction pain, that I convinced my groggy self that I was having a miscarriage. Um, righto Laur. In hindsight, that's pretty stupid, but trust when I say this pain would have convinced any woman that this was a possibility.

After a half hour of this, I began to realize that I was holding my breath and bearing down (two not so good things to do in this situation) and managed to calm myself down enough to begin to start a slow deep breathing pattern as the waves of pain came. This helped considerably. Once I got myself to a point when I could stand up, I got in the shower (to get ready for clinic), which was quite difficult, and then wrapped myself in towels and curled up in a ball child's pose style on the bed crying and moaning. P got a pain pill and an anti-nausea into me and whisked me off to my clinic visit.

The first thing I told the nurse, Jennifer, as she hooked me up to my magnesium IV was the excruciating pain and the continued horrendous throbbing I was feeling, and then requested to speak to the PharmD and Nurse Practitioner about something to alleviate the pain. She expressed her sympathy (duh, she's a woman) and scurried off to speak with them. After a few moments, Jennifer returned and said that the PharmD did not want to prescribe anything, muscle relaxers in particular, because he did not feel that they would work for this kind of pain. Ok, fine. But I still want to speak with him face-to-face. An hour or so later, during their rounds, the NP and PharmD stopped in and kicked off the conversation by addressing my pain, a good thing (you listened!). After explaining the pain, giving my pain scale number and expressing that this should NOT be happening because of the Lupron, the PharmD dropped this lovely bomb: "Yeah, we've been seeing this more and more in younger patients like you. The Lupron just doesn't seem to work". Really? Now is the time you choose to tell me this? And exactly WHY haven't you found a better alternative? Jeebus. The PharmD then said, and I knew this, that an NSAID pain reliever, like Motrin or Midol, would be the thing to really work on this however I am not allowed to take them. Then, THEN he says "I just don't think that muscle relaxers are going to work on cramps" to which the NP made the most AMAZING FACE EVER and says "I disagree with you.". Not wanting to get in the middle of that awkward mess, I sat silently as they argued about what could be done to help: the NP suggesting the muscle relaxers to try for a day or two and the PharmD insisting that I should just take the pain meds I already have (which weren't working on this pain, something I let them know). Finally, they looked at me and said "What do you want?". Well, what do I want? I want to NOT BE IN PAIN because it it BULLPUCKY that I should have menstrual cramps on top of everything else. I want you, the health care providers, to make a decision in my best interest. If I am going to be a compliant and responsible patient, I expect that my health care team will reciprocate with compassionate care. My response was that, if there was no reason why a muscle relaxer would damage my cells or interact with any of my medication, it was worth a FUCKING TRY (ok, I didn't say 'fucking', but trust that I was forceful). The PharmDde Lima does not like to prescribe additional "unnecessary"  meds like this. Now, and this is my real point in this post, if there is no compelling reason why the addition of this medication would harm me, and a chance that it would actually HELP me, who are you to tell me that I need to sit in excruciating pain simply for principle? It is clear to me the reasoning behind Dr. de Lima's stance, there are many patients on large amounts of medication which are not all necessary AND muscle relaxants can be hazardous in terms of drug interaction and fall risk in many patients. Totally get it.  However, I am not one of those patients. Also, and I said this to both of them, Dr. de Lima has never menstruated. Fair? Fair. Remaining in distressing pain is not conducive to proper healing for my body. It is not my interest to stay on this drug for a long time, or to use it recreationally, so it appears clear that a chance at alleviated pain is a good thing. The NP and PharmD agreed to write the order for a muscle relaxer but ended our chat by saying that 'the boss' is going to take their heads off. Alright, look. If you are anticipating this being an issue, have Dr. de Lima actually call me and we can address this together. The last thing I am interested in right now is keeping my health care team happy in the workplace. Your primary interest should be in what is best for the patient.

After two years of interacting with health care providers who run the gamut from very liberal in the administration of medication, to those who require some more...nudging to convince the necessity of certain medications, I have learned a very valuable lesson. It is so damn important, especially for young patients who (and I'm only speaking from personal experience) often feel in an inferior position to their doctors (because of age or education),  to speak up for yourself and your best interest. I am NOT saying that you should demand every pill you think might help, or things that you read on the internet  or question your doctor's every move (unless you go to quack, and at that point, what the hell is wrong with you?). What I'm saying is that there is just no reason to be miserable due to side effects if there is something available to help, within reason. It is worth saying again: pain is not conducive to healing. My advice (if it is worth anything to anyone, which it probably isn't) is to be a smart, informed and active patient. Again, I am not saying that it is appropriate to question everything, these people are the best in the world at what they do and know far more about this than I ever will, however, I know when something isn't right in my body. I know when something isn't helping me heal.  Often you will hear about the doctor 'God complex'. This has not really ever been my experience here at MDA, or most anywhere else for that matter, but I can see how that happens. There is also, I believe, the 'sheep complex' in patients. Do whatever they tell you and don't question. Don't research because you'll just scare yourself. Don't bug them with questions or after hours calls when you are having problems. Be embarrassed to report side effects. No. Fucking. Thank you.

They gave me the meds and they have helped quite a bit. While the pain has not subsided completely, there is now no pain in my lower back and I am no longer clenching my abdominals down, causing more pain. So, that being said, did the meds really work completely on these cramps? Kind of. Have they offered a bit more relief and at least the ability to function this afternoon? Oh yes.

The bottom line (especially to you, young adults): stay involved, stay smart, stay POLITE, stay informed and stay persistent. They work for you and YOU are number one. No other body is like your body. Speak up and do it NICELY when you feel like something isn't right and don't be afraid to talk about the gross stuff. It's only gross to you because you don't talk about it a billion times a day like these folks do. Being an advocate for yourself is the most important role you can play when interacting with the health care community. It is a responsibility and a duty. Will your suggestions and requests always be correct? Hell no. I'm not a doctor, after all, but I do have a uterus and that was some bullshit.

Tonight, heating pads and bed rest abounds. Tomorrow is a new day, my friends:)

 Much (relaxed) love.

Wednesday, September 15, 2010

High as a Kite and Strapped to a Ball...unrelated events

Be forewarned: I have two Darvon and an Ambien in me....this post could be hilarious to read tomorrow...

Today was my first day of home infusion therapy, which was pretty weird considering this is the field that my Dad works in. Aside from a minor (major, if you ask Pappa) hiccup last night when we paged the pharmacist on call to ask about the delivery of my pump, which was promised yesterday, and this pharmacists buttheaded refusal to return my call (jerk), things went off without a hitch. And I think the whole thing was pretty darn cool. Because I am obsessive about staying hydrated and am apparently a BMT superwoman at the moment, I only have to receive magnesium (w/o hydration...I am adequately that...just that no one told my ENTIRE SKIN SURFACE) through my CVC from this cool little ball. Check it:
Nifty, no? The ball is the actual pump and infusion all in one futuristic package (even though Pops tells me these things have been around forever, who knew?!). Once I flushed my lumen and hooked this puppy up, it contracts itself to infuse the medication over 2 1/2 hours. I forgot to take a picture of what it looked like when it was all done but basically the outer bag was flattened and inside was a pole that ran from white cap-thing to white cap-thing (on of those is a filter). No risk of air in the infusion or line because it's like a vacuum. I could walk around the apartment....rather, sleep sprawled in the recliner....until the thing was done. Then disconnect, flush and go on my merry way. Pretty fucking cool if you ask me. The case manager said that, as long as my counts stay FAB-u-lous, I can have this Saturday and Sunday off from clinic too. BALLS ON THIS WEEKEND! (sorry, sorry, I couldn't resist).

For whatever reason today, my noggin' spent most of the day feeling like a tribe of gnomes are trying to icepick their way out of the top of my skull and are camping in their free time in my sinuses. Allergies? Baby cell party (no keggers in there, mmmkay guys)? Tension headache? Probably all of the above. Out of sheer stoic bullshittery I refused to take a pain pill until an hour ago (ok, TWO) when I thought I was going to need to lay the smack down on those little gnomes. Part of my attytude about the pain pills is that I'm not totally convinced that they do much more than make me hhhIIIIgghhh. Headache is still here, I just don't care as much as I did an hour ago. All I know is that methinks a friggin' Tylenol and a Sudiphed would make this go away....however, I'm not interested in having a seizure or start bleeding internally, so I'll stick to the narcotics. OH, and the Place....of Wellness (ellipsis included in actual title) at MD Anderson offers a variety of relaxation, education and exercise classes and one of those is self-massage. I'm thinkin' that would be a good choice here, also I can apparently call and schedule (with doctor's approval) a massage there. Sweet:).

There are lots of things that happen to your body post-transplant, many of them are really gross and sufficiently uncomfortable or painful. Yep, have been discovering this brave new world of yuck. All I will say is that breathing helps HUGELY when the yucko ouchie stuff happens. This is momentary and there are a billion OTC things to help so I'm just gonna keep gritting my teeth and breathing through it until it goes away. Or maybe I'll scream and cry...we'll see what happens....

These things could very easily ruin one's day, but I'm trying my damnest not to let it. Wanna know what helped? The HEAPING PILE OF LOVE that arrived through the mail today. Dear  dear Chestnutwold folks, thank you so much for the numerous cards, it was so humbling and touching to read your messages and feel close to you today:) A giant box of Tastykakes arrived that P and I are going to bring up to G9 tomorrow morning to say thank you to the medical team up there, some Philly love for them! Also, my new headgear came and I'm in love. IN LOVE! You'll just have to stay tuned until tomorrow to see them (mostly because I'm insisting on being able to slap on some cosmetics to go with 'em). Oh hell am I excited!

Thank you to everyone who joined me on Ustream last night, it was so cool to be able to interact with you all and get a touch of home:) Sorry for the late broadcast to those of you who need to hit the hay earlier, I'll start earlier in the evening next time:) Missing and loving all of you so much and thank you for ALL of your love, support, gifts and laughter. You are blessings wrapped in blessings.

Much love:)

Monday, September 13, 2010

Bone(marrow) Dry

I'm dry.





My skin is itchy dry (especially, and most frustratingly, my boobs), which results in a scratchfest every night and a paranoid GVHD "scare" moment the other night (I thought it was a sunburny GVHD rash but the nurse told me today that it was irritated red, dry skin. GVHD looks like hives apparently), my nose is dry, my eyes are dry, dry. Dry. Dry. Dry. And I've been GULPING down water as per doctor's orders. No help, except that at least I'm not thirsty on top of it. According to Dr. deLima today, this is something that happens after transplant to many patients and they aren't sure why. The good news is that it won't last forever and as long as my numbers stay "beautiful" the scratching can't cause any problems like infection, and there are products (we have the technology!!) to help. As for the itching that happens with the dryness, P and I had a 'duh' moment when they asked if we had tried Benedryl yet...uhm, no. Derp. Will try tonight:) They also said I can use saline nose spray and eye drops (all of which I was paranoid to use until they gave the go-ahead because I'm a glutton for punishment evidently...and have read way too many CNN reports of freak eye and sinus infections), so P and I will be stopping at CVS after clinic to clean them out of all hydrating products.

Today was the first time I've seen Dr. de Lima since I was in the hospital and he seemed very very pleased with my progress. In a little under 2 weeks, on day 30 post-transplant, I'll have a bone marrow biopsy which will show how much of my marrow is donor cells (he thinks 90%, which is CRAZY high) and also if there is any evidence of CML left. I would be lying through my teeth (fingers?) if I said I wasn't a little freaked about this biopsy. If there is evidence of CML then I'll move on to have a few rounds of low-dose chemo to try to beat those little bastards out of me, which is a good thing that this can be available, but it would keep me in Houston until at least January. BUMMER. Instead of spending the next two-ish weeks freaking out about this, I'm going to concentrate on the fact that I feel freakishly good (if a bit DRY) for someone not even three weeks post major medical procedure. My numbers have been so great in fact that they're giving me tomorrow off from clinic and sending a home infusion nurse out so I can learn to do my magnesium and hydration via pump at the apartment. So flipping cool. Maybe I'll make pancakes for breakfast tomorrow.....hmmm......


A quick update on the clusterfuck: there is apparently something wrong with and I (and many of you who have been trying to follow it) am just a bit tired of making faces silently into a camera, so I created a new account at Ustream which appears to work really well. If you created a username and 'followed' me on (THANK YOU!!!), I suggest canceling that account (so they won't send you a billion e-mails) and you can move on over to Ustream- they call it a 'crowd'. Here is a link to my channel, to subscribe click "join crowd" (it's free of charge) and follow the instructions:

When I broadcast I'll post a message and link on facebook, which will be again tonight at 10 pm Philly time(9pm Central).

Thank you dear friends and family for your love and support. Hearing from you online and over the phone and through the mail has provided such comfort. Your generous gifts are humbling and have brought many smiles:) To say 'thank you' can't even begin to cut it.

So, so, so much LOVE!

More cupcake, Less cancer

So I hear that Blogger has been an asshole these last few days. My posts haven't be loading or saving and rumor has it that comments aren't posting either, my apologies dear friends:). Hopefully the kinks will work themselves out! Now, on to the sugar rush.

Before coming down to Houston, I did my research. Researched the hospital, researched the doctor, researched the transplant, researched the city. Most importantly (subjectively speaking, of course), I researched cupcakes. Oh, cupcakes. They are compact, indulgent, offer the luxury of trying several flavors at once without the burden of a whole cake, beautiful little jewels of confectionary geneous. I love them. At home, I'm a cupcake baking nut (I'm even dorky enough to have a special cupcake apron) but down here, without my cupcake supplies and an added paranoia of touching raw eggs, I feared a cupcake drought. That's where my research came in. On the advice of googlemachine, the entire nursing staff of G9 (yes, I polled them), and one very sweet little girl named Olivia, we settled on Celebrity Cupcakes which is conveniently located minutes from the hospital and our apartment.

On Friday, after my first outpatient infusion, P drove me over to Celebrity Cupcakes to sample their wares. OH good lordy. It's tucked away in this little three-store shopping center (with a frozen yogurt place I'm dying to try) and is everything a cupcake only bakery should be. Small, white and pink and smells like buttercream. The cakes were lined up in a glass case like jewelry and the big white boxes are tied with thick pink ribbon instead of string...oh man, can you tell I'm a cupcake freak? I'm over here fanning myself over cupcakes in a display case. I wish I had the forethought to take pictures of the place. (as an aside: I thought I would feel weird walking in there masked, but everyone around her is so used to it, it was totally cool). OK, so here are the cuppycakes (crackcakes?), observe and bask in their beauty with me:

Aren't they puurrdy?!?!? From top left: lemon frosted lemon, chocolate frosted vanilla (my FAVORITE EVAAARR om nom nom), Red Velvet (yes, the one with blue frosting is Red Velvet...meh. I didn't like this one), Coconut, Fleur de Sel (chocolate filled with caramel, sea salt on top- HEROIN CAKE), Hummingbird (a southern specialty- banana pineapple pecan with cream cheese frosting). Mom and P and I cut these into thirds (all except for the Fleur de Sel, I may have eaten most of that on my own.....) and went to town.  Important lesson learned here: I hate cream cheese frosting. Seriously, I felt so guilty because these freaking things were expensive and I didn't like half of them (literally, 3 of them) because of the cream cheese frosting. Cream cheese belongs on bagels (and Cheez-its, no lie) not cake. Butter goes on cakes. Lots of butter. P and Mom LOVED them though so everyone won in the end:) Check out the menu:

Marie Antoinette said "Let them eat cake!", I say "MORE (CUP)CAKE, LESS CANCER!"

Saturday, September 11, 2010

Creative Uses for Common Household Products

Did you know that a lint roller is good for more than just removing fluffy's fuzz from your work trousers?

And now I'm completely bald:) As much as I liked the cheetah look a few days ago, the bad-haircut Barbie look wasn't really working for my complexion, so I took matters into my own hands. Voila! So much less itchy!

In other less hairy news,  since being released from the hospital on Thursday, I'm required to come to Ambulatory Treatment Center (ATC) everyday for blood work and a 3-4 hour infusion of magnesium. One of the drugs I'm on, Tacro (the anti-rejection drug, or as I like to think of it, the housewarming drug for my donor cells) eats up all of the magnesium in your body so they need to supplement. Basically I just sit in a mini hospital room (which is kind of cozy) for a few hours and then peace out.  In addition to the infusion, I take 4 mag pills a day (along with all of the other body-happy pills) to keep my kidneys and other guts happy. Apparently in a few days a home health nurse will come over to the apartment and give me a little personal pump to do this infusion at home on days when I don't have to come to ATC. Good deal if you ask me!

What's not a good deal? Well, apparently the medical community can't agree on what the post transplant diet should be and it's REALLY frustrating. At first, we were told I wouldn't be allowed to eat fresh fruits or vegetables for the entirety of my 100 days. Then, in the hospital they told me I would be able to have them upon discharge. Yesterday, the nurse flipped out and said I couldn't have any at all. Then the nurse practitioner came in and said only thick skinned fruits and any vegetables except lettuce and tomato. My discharge orders say all fresh fruits and vegetables, no berries or lettuce and no tap water (only bottled). Uh. WTF do I do? No one can seem to give me a straight answer and I'm all paranoid now. My numbers are great at the moment (beautiful as they said yesterday), no elevated risk for infection (other than the fact that I just had a fucking bone marrow transplant so all of my cells are babies), but I'm thinking I'm going to err on the side of caution and go with the thick skinned fruits and well washed/peeled veggies (though all of my sandwiches are now ruined for lack of lettuce and tomato..bummer). Also, I'm really freaked out by mushrooms so I'm going to steer clear of those.  Dear friends, dear epicurean friends, have you any suggestions for yummy dishes that fall into these categories that you care to share? Much appreciated:)

There is new head-gear on the way and I'm friggin' pumped to post pictures....fuck yeah! Also, I hope to be able to get to work this afternoon, but if it doesn't (the wireless has been goofy at the apartment due to some super duper email blitz on comcast a few days ago), please check back later.

With much love and deep, respectful remembrance.

Friday, September 10, 2010

Home Sweet Home...kinda

The last 24 hours have been a whirlwind of relief and love, please forgive me for not posting last night!

Today was spent running back and forth from the apartment (through FRESH AIR AND SUN!) to MDA for blood work and then a 3 hour magnesium infusion. This post will be short because I'm a little sleepy:) Toward the end of my infusion this afternoon, which took place in what was basically a hospital room, Elsa the AYA coordinator popped her head in and said that she had someone for me to meet. She has been trying to track down another CML Stem Cell/ BMT patient my age to talk to, and today she succeeded. Montreal is 25 and just came off of his 100 days from his allo transplant (related donor- his only sister was a perfect match, AMAZING!) and was in the clinic today to interview for a spot on the young adult council. I can't even tell you what it felt like to talk to someone who understands, like really understands, what it's like to have an old person's disease that is controlled in 98% of patients. He was funny, honest and in amazing health. We laughed about Gleevec 'the magic pill' (HA.), what the 100 days experience is like and our time on G9 (the Peds floor). Marcel hung out for a good hour and a half and it was just awesome to meet him and I'm so grateful to Elsa for introducing us. Thanks Elsa:)

Here is a photographic walk through the last day or so. Enjoy!

This was the view from my bed to the "outside". Yes, that's a fucking wall. BUT....

Those prisms on the top of the window created rainbows on my wall in the late afternoon. They started on my bed and then worked their way to the wall. Those rainbows got me through the toughest chemo day I had. I remember being so sick and miserable and I opened my eyes to see a rainbow on the quilt in front of me. I knew everything would be OK.
So, I've been meaning to post this picture. This little pink Ganesh was a gift from two dear friends, Justicia and Shawn. He sat there on my tray table looking down on me (next to St. Peregrine) the whole time I was in the hospital. Removin' those obstacles like whoa:)

Stuffed crust pizza with peppers! It was not as satisfying as I hoped it would be.

This, however, was SO satisfying. And comforting. And NORMAL. P made his chicken parm last night. See that big salad? Totally ate some and then found out today that I'm not allowed to eat lettuce. I got uh....reallyfuckingscared...and then they told me that once was OK because my numbers were good, just not to do it again. Oy.

Meet my little lizard friend:) These guys are everywhere in this plant which grows along our patio. I love him.

A shout out to the sister on this one. E sent this to me when I was in the hospital and tied to the bag of ice on my head (when you can't take tylenol, ice is the BEST solution. trust.) My noggin' (P has decided to refer to my now completely bald head as my "noggin'" until the hair grows bake) was a poundin' tonight and this thing did the trick. Thanks sis:)

Thank you so much for the comments and emails of support and love yesterday, dear friends. Your love sustains:) FYI, tomorrow afternoon I'm going to try to broadcast live from my account. If you would like to join the fun (you can talk to me!! wahoo!), please either check FB around 3 or go to com and search 'hollowmeout' to subscribe to my channel. I hope to be able to talk live with you!!

Much love (and fall weather!) Philly!

Wednesday, September 8, 2010

Lucky Number 13

So, by around this time tomorrow, Day 13 post transplant........

they're DISCHARGING ME!!!!! Wahooooo!

For the last two days my blood counts have been creeping up, which is a VERY good thing in this circumstance, indicating that....ladies and gentleman....WE HAVE ENGRAFTMENT! This means that those blessed little donor cells have started to grow in my bones, they are hangin' out with my left over cells for the moment, and have begun churning out brand spanking new cells. My WBC (white cells) shot up literally overnight, meaning that I'm a less of a risk of infection, so it's safe for them to let me go. Those little white cells have also done their job by almost wiping out that horrendous pain I was in. Like, overnight. Amazing.

Tomorrow morning the IV team will pay me a visit to change my CVC from a triple lumen to a double lumen (which is funny because I've only had two functioning lumens since transplant day) and then, as long as I don't have any fevers or rashes (and I'll try not to), Mom and Phil will be taking my bald self OUTTA HERE.

About 70 percent of me is totally thrilled that this has gone so well, and the other 30 percent is scared shitless. Completely shitless. Now starts the super scary part where Laura becomes a complete germaphobe/ gvhd watchdog for the next 88 days BUT I will be a well-rested germaphobe. Lemme just tell you, these folks have not let me sleep through the night for the last 19 nights. Midnight vitals and weight, 4 am vitals and weight, 5 am blood draw, 6 or 7 am resident visit (word to the wise, residents: you do NOT need to turn on every light in the room to ask me if I've gone to the bathroom. my answer will be the same in the dark), 8 am vitals, 9 am meds, 10 am rounds...= sleepy Laura. It is going to be so, so sweet to finally curl up with the hubs in the same bed after nearly a month. If I've said it once, I've said it a thousand times (and meant it!): it's the small things that matter and sustain:)

At the moment, Mom and Phil are busy preparing to bust me out, renting a car, cleaning the apartment, changing air filters, all of those loving things they are so amazing for doing. Thanks Mom and Phil, I love you guys:)

Until tomorrow, when I get to smell FRESH AIR AGAIN, Much Love Philly (and beyond), thank you for everything!!!!

In the presence of great wisdom

Have you ever been in the presence of someone whose wisdom and strength bring you to your knees? The kind of person who has a story that overwhelms you, leaves you speachless and tearful? I had never had this experience until ten minutes ago.

Twice a day, nurses and nurse assistants change shifts. There are some that are always on Peds, and some that are part of the nursing pool meaning that there are nurses and nursing assistants that only rotate through here once. These nurses and assistants are often on night shift. Tonight I have a new nurse (new to me) named Merna. Merna came in a few moments ago after I buzzed to let her know that my Tacro pump was beeping (again. air-in-the-line again. the stuff is like champagne but less fun). Merna then mentioned that my Tacro is being changed to an oral dose tomorrow so I won't have to be bugged by the beeping all the time (so friggin' true). I told her that I had set a goal before admission about how long things would take, being taken off IV meds being one of those things, and then joked about setting goals and staying positive. Merna smiled at me and said that she had a story, a story that she doesn't share with all of her patients.

Merna said that her twin daughters will be turning 14 this November, and that 14 years ago, at the end of this October she came back to life. I was startled at this. She went on to say that 14 years ago, when she was 6 months pregnant with triplets, she was in her car when she was struck by a driver heavily under the influence of drugs and alcohol. She spent two months in a coma and was declared brain dead.  One of her children did not make it through this ordeal.  Merna's mother refused to take her off of life support and eventually, Merna woke up. She relearned how to walk over the course of 9 months, something she was told she would never do again. She was standing in front of P and I tonight, as tall and proud and healthy as any woman I have ever met. The most amazing, most humbling part of this story is this: Merna hung the newspaper article about the accident in her daughter's room. Not, she said, to remind them of what happened to them, but to remind them of forgivenes. Once Merna was able to walk, she went to the prison to visit the man who had caused the accident. She forgave him and asked him to learn from this and change his life. That man has and he and Merna keep in close correspondence. Merna looked at me, square in my teary eyes and said this:

"Forgive your cancer."

I will, Merna. Thank you.

Tuesday, September 7, 2010

89 bags of morphine on the wall...and a pile of hair on the floor

Welp, not gonna lie here (I know I say that a lot but...meh) I've been in excruciating pain for the last two days. As in, begging for morphine pain. Which has turned me into a major grump. Like, MAJOR grump.  Goddamn mucositits. The pain has moved from my mouth and into my throat, which I thought would be an improvement...but then I remembered that swallowing is an essential bodily function. OH swallowing, how I miss thee. And burping, holy hell does burping hurt. That's just cruel. Ya ever have one of those horrible sore throats that makes it feel like you have a softball rolled in glass lodged in there? Yeah, that's what I've got. The "burns" in my mouth have almost completely cleared, and the pain was better today than yesterday, but this still blows. Last night, STARVING for something solid to eat, I ordered pasta with oil and garlic for dinner (and some veggie soup and a popsicle).

Oh my GOD did it smell good...but all of it felt like swallowing swords. Ugh. P finally made me throw in the towel (15 minutes of crying, cursing and shaking), call the nurse for the heavy stuff (I need to write an ode to morphine...or maybe that's what this is...) and resorted to milk and a protein drink for dinner. Chocolate milk. Friggin' awesome. Due to my morphine high, the milk carton was just about the funniest damn thing I've ever seen in my husband, dear husband documented my crazy. Might as well share it here.

In other news, my hair is FINALLY starting to fall out. It seems kind of strange to put the 'finally' in there, but ladies, for real, you know how itchy it is when you can't shave your underarms and legs. Fun fact? The hair on your head is NOT the first hair to fall out.....I'll let you figure that one out. One big perk here is that this 'hair removal', while the suckiest imaginable in practice, yields pretty kick ass smooth and un-irritated results. So there's that.  Today the hair on my head started falling out in earnest and I'm starting rock the leopard look.I hear that's very in this fall anyway. Will totally post pictures when the baldness gets awesome.

There is definitely some really exciting news to share in the coming days but I'm too paranoid to post it yet. Let me just say that Mom and I were really REALLY happy today ;). For now, I'm gonna lie back in bed, suck on a popsicle and wait for the pain meds to kick in. To my H-ford friends, C-wold and music dept. in particular, happy start of the school year! Hoping those little buggers were good today (Mike, if my kids are out of line, scare them with the milk picture of me....tell them I'm going to creep into their windows at night and cackle into my milk carton....or something like that).

Much love!

Sunday, September 5, 2010

It's a beautiful day in the neighborhood...errr...PEDS floor

Since my platelets are super low (resulting in a platelet transfusion today, did you know they're yellow?), I'm not allowed to use my stretchy bands to exercise or cycle for too long on my bike, so the only thing left to get this blood a pumpin' is to take long walks. Now, thank the good lord that I'm allowed out of my room (some transplant patients aren't), so I can roll my butt all the way around the floor. My side is Pediatrics and the other side (it's an X-shaped building) is adult lymphoma, so obviously my side is the cheerier of the two. Take a walk with me:

Meet our pet fish. That orange one even posed for the camera. This tank is just outside of my room and it gives me way more comfort and joy than is reasonable to see their little fishy faces everyday. It also makes me miss the cats. Good morning, fishes.

This hallway has the best light in the morning. Unfortunately it looks out onto a big wall, so I decided not to take a picture of that. Bask in the light with me.

This hallway is full of florescent light, but it has the best view from those windows. Its fun to stand at that window and watch the doctors and nurses before shift change on the street below. Also, along the wall there are tiles of children's art from Christmases past. Very cute.

My favorite window. The two buildings in the back there have rooftop gardens. So lovely:)

No one was out this morning, but this intersection is usually bustling. That is the giant garage for this hospital and St. Luke's across the street, it looks like an assembly line during the week with all of the cars.

The Pedi-Dome. This takes up about 1/4 of this side of the floor. It's HUGE. You can't see it in this picture, but there is a basketball net and a giant school playhouse. This room is always filled with light. They also have BINGO in this room, if fact, I think that's what those tables are set up for...

A good portion of the hospital is under construction, this floor is no exception, but this sign makes me smile every time I walk by. Why? Because in my head it's saying 'ospital, in Audrey Hepburn's voice from My Fair Lady. It also says "g'day govnah!". Oh, the simple things in life.

Annnnnd then I'm back at my room. Thanks for joining me on my walk:) Whew! I'm wiped out...time to suck down another instant breakfast!

Tree of Life

There is something just very fucking cool about a hospital that has an artist-in-residence. On Friday afternoon, me an' my IV pole shuffled over to the "Teen Room" to find out what an artist-in-residence in a hospital is all about. Well, basically, he's all about being awesome.

Ian, the AiR (like that abbreviation?) puts together large collaborative projects with works from all of his patients, mostly kids, adolescents and young adults, then displays them first in the hospital and then on a traveling tour of the nation. Pretty cool, right? Totally cool. He will also come to your room and work on projects for the duration of your stay, sometimes even as an outpatient. As an example, he shared pictures from a project he just completed with a patient who desperately missed her horse. When you have a BMT, you're not really allowed to be hanging out with animals during your 100 days (let alone farm animals) and this patient was having a really difficult time with this. She, with Ian's help, did many many painting and sketching projects about her horse. Well, this woman just finished her 100 days and, as a celebration and collaboration with Ian, painted a mural ON HER HORSE. So cool.

The project of the moment though has nothing to do with a horse. The plan is to build a giant tree, a tree of life as it were, made of pieces of patient art. Like a huge tree-shaped quilt. The tree bark will be made from strips of paper decorated by child patients, the branches hung with garlands of beads also strung by children and the base of the tree, the ground life, will be covered in flowers and plant life created by AYAs (adolescent/ young adults). There were seven of us (AYAs, all in our 20s in fact) working during this gathering. We were given burlap, wires, beads, paper, glue and a few hours to create. The idea of sitting around a table and creating imitated life seemed like a fitting metaphor for the setting. All of us, pretending that this was a totally normal thing for a Friday afternoon, some wearing gloves, all attached to IV poles. A new kind of kula. We talked, glued, twisted, laughed, sat in silence working and finally finished our plants. Seeing what the other patients created was so cool, how we each interpreted the assignment of "plant life". Here are a few scenes:

The creative process. I demand extra credit for having done this with gloves on. The girl using the hot glue gun while wearing gloves and NOT burning herself gets super duper extra credit.
My lotus:) Beads and wire and about two hours of really determined work (this was one of those projects that seemed like a great, simple idea until I started twisting and beading). Other flowers are going to be added to my piece of burlap and I really like the idea of that. Sharing creative space forever with other AYAs.  Different lives, different stories, same six by six inch space.
Ian said mine looked like a tiara from far away, so he put it on. Oh, artists, so darn creative.

The tree should be completed in the next year or so and while it would be great to get a chance to see it, I'm kind of hoping to make my contribution and then never lay eyes on it again. Mostly because I don't want to be here in 6 months.:)

91 slices of pizza on the wall

Sorry for the break between posts! I've been a bit of a busy bee the last few days and pass out at the end of the day so updates have been going unfinished. Due to my manic/sleepy few days, today will be an update-fest. Buckle up:)

This hasn't really been my style, but today I am going to start with a little gripe. That gripe is mucositis. Fucking mucositis. What is that you say? Well, it's when you're mucous membranes hate you (mouth, etc) and decide to be assholes and get all ouchy-burny-ulcery-peely on you thanks to chemo and it's killer tendencies. Let me backtrack a touch and say that my mucositis is like, NOTHING, compared to what many patients endure, which make me feel like a bit of a jerface for whining about it. But then I remember that I couldn't chew my breakfast this morning and I get grumpy again. It feels like I scalded my mouth badly, mostly under my tongue and the insides of my cheeks, with hot liquid. No open sores or anything (and it's going to STAY THAT WAY, you hear me membranes?!), which many many patients suffer. That degree of mucositis often results in the patient having to receive something called TPN, which is an IV nutrition (not a feeding tube, it's like a milkshake or something you get through your port). TPN is bad news for your liver and kidney function, so I'm basically hellbent on NOT having that happen. That means that even though it feels like I'm chewing glass, I've been ordering and nibbling what I can. This morning though, I got just fucking sick of it and ordered one of those instant breakfast drinks. Man, was it friggin DELICIOUS! Because mucositis goes away basically as soon as you engraft (or those little donor cells start a grownin'), and I kinda like this breakfast drink and applesauce combo, I can deal with this for a few more days. This, my friends, was my breakfast:

Last night, when the mucositis was rearing it's ugly head (it feels awful in the morning when my mouth is dry, OK in the middle of the day and then sore again at night- just to keep me on my toes), all I could think about eating was a slice of Pizza Hut Stuffed Crust Pizza. Remember that stuff? That calorie bomb that they created when we were kids? If you were a cool kid you had Stuffed Crust at your birthday party. Man, I would have killed for a slice of that last night. Yes, I made a steadfast commitment to maintain as healthy a diet as I could, requesting that P and my Mom keep me from eating crap just because I can't eat fresh, always ordering veggies and fruit, trying to keep my diet balanced, etc. But last night? Ouf was that hard. Of course, the fact that I can't comfortably chew keeps me in a diet of soups (the veggie soup here ROCKS, no kidding) kicked up with crumbled cheez-its (oh man are those things crack). Also, as a funny aside: every morning and evening (9am and 9pm to be exact) my nurse comes in with a little cup of pills. In the morning it's all the "anti" drugs: anti-fungal, anti-viral, anti-biotic. In the evening it's a Pepcid to keep my tummy safe and this other white pill called Megase (my spelling is probably totally wrong on this one). I kind of never (OK, didn't) questioned what Megase was, until last night. Turns out? It's an appetite stimulant they put me on last week when I lost 5 pounds from being completely grossed out by food for a few days. Huh. Surprise! (?) That might explain my craving for pizza.... or maybe the pizza craving is due to the fact that I've been staring at the same four walls for two weeks has begun to fuck with my brain. Whatever.

To be honest, the food here isn't horrendous. It's not awesome, by any means, but there are a few things on the menu that I really like. In fact, they altered the menu a few days ago to remove everything fried and fatty (not a terrible thing, I get it). Things I like (grilled cheese is so last week): veggie soup (it has cabbage, YUM!), vegetarian chili, corn bread, the cooked green beans, kernel corn and peas, turkey sandwich ( on rye with mayo and pickles, of course! it's fresh roasted and really surprisingly good), meatballs and marinara (but they took it off the menu, bummer) and, of course, the cheesecake. There are other random things that I like on there that aren't made here (bagels and cream cheese, yogurts, canned fruits), but overall the food ain't the worst hospital food ever. Yep, it gets totally boring ordering the same stuff all the time, especially since at home P is an amazing cook, but it's temporary. From the few times that I've ventured into the unknown world of of other things on the menu (read: ANYTHING with chicken in it), it's been totally barf worthy. Come on! People in this hospital are already going through hell (and feeling pretty pukey), the least they can do is not ruin a simple chicken breast. Jeez.

The last few days have brought an avalanche of love from home. Some from dear friends and family, and some from dear friends of family members. To all of you, thank you for brightening my day and my room, for your words of love and encouragement, and for the big smiles. I feel humbled and blessed to call you family and friends. Thank you:)

Girlfriend has lots of stories to share today, so thanks for reading:) Missing Philly and MUCH LOVE to you!

Thursday, September 2, 2010

94 vodka tonics on the wall and I really need one

SOOOOOOOOOOOO I had this other post composed in my head about going to a discharge class today and yadda yadda AND THEN....and FUCKING THEN....P discovered that housekeeping had mistakenly taken a GIANT BAG of my laundry, as in a week's worth of FAVORITE stuff and we didn't know about it. The big problem with this? They take those bags, which have linen (sheets, towels) in them usually, off site to a GIANT washing facility. So this means that it's all gone. Forever. Fuck.

Yep, it's just clothes, but I put a lot of thought into those clothes. Like, months of thought into exactly what would be perfect to bring. Obsessive thought. Some of it was even gifted to me from friends and I loved it. A yellow cashmere wrap that I adored (mostly because I got it on sale for $10). ALL of my pants. Well, except my ganipatipants (there has GOT to be symbolism in that). All of my bras, except the one I'm wearing.  My favorite pink dress. This great white hoodie that had a cool skirt thing on it. ALL of my tank tops. There are so many yogic ways to talk about this but right now I reserve the right to say this fucking blows. Maybe this is my major bump in the road. What-the-fuck-ever.

Now, instead of going to sleep, I'm going to start re-ordering shit. OH yeah, AND this morning I woke up and the mucositis started. It just feels like I burned my mouth with hot coffee, and it didn't bug me most of the day, but right now it's just making me mad. HARUMPH.

Karen and Christie, lemme just tell you that you ladies have some kinda intuition. Thank you:)

Much love. Ugh.

Day 5 (or 95 bottles of beer on the wall)

I smell.

No, that's not a joke (though I'm sure someone would probably agree with that statement), I actually smell. Not bad, just...uh....weird. Like, really weird. And apparently it's going to get stronger. Yesterday one of my nurses commented that my pee (cancer blog, TMI allowed) was starting to get that BMT smell and then told me that soon my room would start to smell that way too. I was all like "Uh, OK weirdo." and went along my merry way. This morning?  I caught a whiff of myself when I rolled over (yeah, totally sniffed the pillow first convinced it was something on or in there) and could do nothing but make a face and then laugh. Of all of the injustices in the world, this has to be right up there with there not being In-and-Out Burger on the East Coast (because let's be real here, smelly ain't bad when you're alive).  Ya know what? I'll take smelly and feeling good over perfumed and feeling shitty. Any. Freaking. Day. 

The nurses and doctors, and some other patients, have commented on my general state of not-very-decrepit, using words like "you look amazing for five days out!" and, to be honest, I wish they would stop saying that. Those words feel like a burden and more often than not bring the scary foreboding feeling that I shouldn't be doing this well. That there's no way anything good can come from feeling and looking this good at this point. There's no way I got off feeling good. I don't deserve to feel this good.  But then I remember that there are patients like this, that it is possible, does happen and that there are always exceptions. My doctor wisely said the other day that there are not a limited number of "easy cards" that one can draw during the transplant process (NOT that this is easy, just in the world of transplants/hell). Everyone IS different. This is not to say that I don't anticipate feeling crappy (or very crappy) as some point, it just serves to calm me through these first days. That calm, or finding that calm is also a way to achieve more calm. In the moments when I feel the scary 'what-ifs' and 'I heard that's' and 'this coulds' start to creep up, bringing my heart rate with it, I focus my mind on slowing my breath. Slowing my heart. Stilling my mind. The other day during one of those moments, I started thinking about what happens to your body under stress. Your immune system can't function as well. You can't sleep. If my heart rate is too high, those little blessed donor cells could be damaged or (ridiculously) just go coasting around and never graft. These are all things that put my system under more stress than it needs, preventing my healing. Keeping me here. All of this is counter-intuitive to what we need to be goin' on right now. So I work to stay calm and happy.

How do I stay as calm and happy as possible? It's not easy. No lies here. It's fucking work to not freak out or get really bored. Do I freak and get really bored? Fuck yeah. Totally. Do I stay that way long? Uh, I try my damnedest not to. The temptation to sit on my ass in bed and wallow is totally there, it's not a strong temptation, but it's there. Yesterday, thankfully, there were so many things that came my way to perk me up, keep me active and very, very happy (lies, I'm not very, very happy. sometimes it's just not sad).

One thing I have learned is that, around here, word travels fast. "Oh! You're a musician?!" POOF! Keyboard and Music Therapist show up. "Oh! You love yoga!" POOF! Yoga teacher shows up. The only thing this phenomenon doesn't work for is food. "OH! You want vegetables and fruit?" Meh, no. The only thing that shows up is more crappy food (my love affair with the grilled cheese is over. In fact, I may never eat another for the rest of my life). Oh, well, can't win 'em all. So, back to my point. Word got around that yoga may be just what the doctor ordered, so yesterday afternoon a teacher showed up.

Satsiri was like a pool of calm cool water. She is a small, feather-like woman with this smooth gentle voice. She practices and teaches Kundalini yoga, something I've only tried once, so it was fascinating to talk to her. Though our yoga worlds are a touch different, they are also the same.  Actually is was more than fascinating to talk to her, it was so deeply satisfying to speak 'fluent yoga', as we joked, with one another. She led me in a mediation and taught me Kirtan Kriya and a few more practices. This may be a  window into a great opportunity to deepen my practice. What a perfect time in my lifeline to be adding this. How lucky I feel that this was available.  Satsiri reminded me also of something yesterday that I am surprised hadn't dawned on me until now: John Friend, the founder of Anusara yoga,  began his teaching career in Houston. Uh, duh. In my head there is some symbolism in that.

There was one thing that stuck out to me from our conversation, however. Satsiri was telling me about her daughter, who is about my age and a Kundalini teacher like her mother. She told me about her daughter's training as a teacher, which she began when she was 13, and her career in integrated health. Then SatsiriSatsiri's daughter was unfamiliar with (she did not specify what that style was). Satsiri said that her daughter was horrified that the teacher and students chatted through class and laughed. Her daughter was also horrified that this teacher mentioned a party that she went to and told a story about that party (she did not share what the story was, however). It was not the story that stuck with me, it was how Satsiri described what her impression of that class, through her daughter, was: "There is just nothing yoga about that. There was no yoga going on there". Wow. Huh. As much as I liked Satsiri, this statement surprised me. My eyes darted to the pump I'm hooked up to, and I felt the port hanging out of my chest and the cold linoleum under my feet. I noticed the tubes twisting from me to the pump and the cold air conditioning on my bald head. Standing there, in the midst of everything that is outwardly "just not yoga", I felt the yoga. Yoga is not in the poses or the dogma or the lilting music or the Sanskrit names or the Lycra clothing or the dimly lit studio or the incense. Yoga is in the practitioner. Yoga is in everything, you just need to look for it. It was so shocking to hear the assessment of what yoga properly "is" or "isn't" from someone working in a cancer hospital, someone who is a survivor. Satsiri used a lot of language like "Yoga teaches that..." and "Yoga says that..." in conjunction with words and ideas that I'm unfamiliar with, but that does not make her yoga less or more than mine. It's just different. In a place that is so full of innovation and cutting edge thought, of wonderful care and great opportunity, it was jolting to hear a gate slam. "....nothing yoga about that". Huh. Nothin' yoga about this then, either.

The rest of the day was rather uneventful, as was much of today. There is a story to tell about today but I will leave it at this: there is another transplant patient on this floor, who is roughly my age, who is also named Laura, who will be receiving an Auto BMT (her own cells, not a donor) next Friday. She has had a rough go of it and she is a delightful woman with a very caring boyfriend. Please, if you can, send some of your prayer/intention/juju her way.

Also, to H-ford folks who went back today, it was AMAZING to hear from you. Who woulda thunk that I would do anything to be sitting in that meeting this morning?? :) Hoping you all have a wonderful start to the school year, give those little ones an extra squeeze for me if you think of it (or make them sing their LSAs twice, that would be just evil and fantastic;)!

Thank you for the cards, messages, texts and calls. These are the tough weeks, it is SO FREAKING GOOD to see your words and hear your voices. Happy Fall, Philly!

Much (smelly) love.