Thursday, April 29, 2010

On Failing Hard Drives and Elephant Dieties

If there is anything that I have learned in the last year and a half, it is to be open to change and to know the necessity of acceptance. Three times now I have had posts a-brewing when something completely unexpected happens and I end up writing about something else. This post will be dedicated to the things that I had intentions to write about, but didn't for whatever reason.  Also, a small pity party for the loss of my hard drive.

Oh, yes, my hard drive. Last night, while I was on the phone with a dear yogi friend, my beloved Mac Book started chirping at me. Yeah, chirping. Dear Yogi Friend insisted that I skedaddle off the phone and get that looked at ASAP but as she was saying that, the screen went gray and it sounded like the thing was going to take off and start flying around the room. I just KNEW this wasn't going to be good so off P and I went to the Apple store for a date with the 'geniuses' (I am very suspicious of that title...). The moment I told said 'genius' what happened, he asked "Do you have your files back-up?"- doesn't take a genius to figure out what THAT question means. Long story short, minimal backup exists and I now have a new hard drive and case on the way.

You ever wonder why we back up our computers but not other parts of our lives? I got to thinking about that this morning when I realized that two of the things I lost when my hard drive imploded what my pictures of my cat when we brought her home from the shelter, and the pictures of P and I the day after I was diagnosed, Christmas Day 2008. It occurred to me that I am more emotional about that loss than the loss of all of my recipes and other various documents. Most of what was on that hard drive was from college. Not such a huge loss, right? Granted, now my resume, all of my observations from my supervisors in student teaching and the guest list from our wedding are gone HOWEVER, did I need 'em? Debatable. Mostly, I miss those pictures and what they represent. They were some of my only photos that I never uploaded to facebook. Don't know what else to say about that other than, bummer.

Alright, so, I said there were things that I meant to write about and didn' here they are in no particular order.

1) Some of you may know this, many may not, but I have a thing for Ganesha (Ganapati).  He can be found hiding all over my apartment and also at work, sitting on my desk. He removes obstacles, gives me courage in starting new endeavours and is representative of staying playful (oh, and he's known as a patron of the arts and sciences, supa cool). Every time I om, I think of him (check out the iconography of the symbol of 'om' or 'aum' and it's relation to the image of elephants). There is a lot of very beautiful imagery out there of Ganesh, one of the most significant that I have in my life was a tiny black and white stamp of him glued into a card from my Acroyoga kula, given to me a few weeks after I was first diagnosed. The person who included Ganesh in her note in that card is an inspiration and that card has a place of honor in my home. So, a few weeks ago when I went to hear Krishna Das and we chanted the 108 Om Gam Ganapataye Namaha mantra (mantra dedicated to Ganesh, 108 being an auspicious number- 108 sun salutations, 108 beads on the mala or prayer beads, etc) it became a very significant experience. Imagine a concert hall filled to the gills with yogis and their friends, chanting a mantra together which holds deep meaning for you. Pretty awesome (and I mean awesome in it's true meaning, awe). I closed my eyes, took in the presence of my friends sitting next to me, sharing in this experience and dropped into the mantra. Somewhere in the middle of those 108 repetitions, I got a very clear image of myself, sitting in a hospital room smiling. I'm going to leave that....well, at that. I could write pages and pages on that, but I won't. What I will say is that, though I grew up Catholic, was married in a Catholic church (am not currently practicing however), I still think that one can find spirituality in places that don't necessarily fit into "your religion" or "your culture".

2)(this is the good news I mentioned previously)This I will keep short and vague- vague for hopefully obvious reasons. Two weeks ago I met with administration at work about my options for next year. Long story vague (I've used that too many times in this post), I was FLOORED, and I mean tearfully FLOORED at the generosity and support from the district that I work in. I am going to hesitate to share too much here until all of the correct paperwork is in order, however I will say that P and I will not have as much financial pressure as we anticipated next year AND I certainly have a light at the end of the tunnel. Looking forward to sharing the full story here later on.

3)Last week I was pulled off of Tasigna again after my platelets dropped below the 'safe' line of 50 (it's somewhere in the low 40s, maybe lower). This basically means I'm all bruised again and shouldn't really be doing anything fun without exercising extreme caution, which in itself is not fun. This also means that I don't wake up with a headache every morning, so yay for that. I have another blood test scheduled for early next week to check in. In other related news, I'm running out of 'good veins'- the nurse actually sighed when she came at me with the needle and then asked if I was going to get a port. Oh, and then she asked if I started looking at wigs yet. So, thanks anonymous nurse for that.

4) The official donor search has begun. Somewhere out there a person is walking around with some spongy material in their bones that will save my life. To my donor, thank you. Those words are far too simple for the magnitude of what you will do for me. So, I will leave it at thank you. I wish you all the blessings in the world, you deserve them.

To wrap up here, thank you for reading and for supporting P and I. I only hope that we can repay you all someday. Gives me a long-term goal, no? :)

Tuesday, April 27, 2010


As a super-duper documentary geek (my Netflix queue has, oh....30 documentaries lined up on it) and cancer patient (duh.), I am very excited to see this film. Check it:

So much good news to share, but it will have to wait for another post as I need to get in the shower and go teach the kiddies how to play "Old MacDonald Had A Farm" on the recorder. I lead an important life :P

Thursday, April 22, 2010

short post about short hair

I had a dream last night that it was after transplant and I had very, very short hair. In the dream, I kept trying to put on wigs to cover up my near baldness but they all ended up upside -down on my head, a pretty ridiculous sight, even in a dream. They were sticking up at odd angles and the hair was piled onto my head with the cap of the wig plopped right on top. The wigs would slide off of my head or the hair would end up in my eyes, but I couldn't figure out why. At the end of the dream, I was standing in my bedroom and saw myself in the mirror with the wig on upside-down and my face all puffy. I took the wig off and discarded it (one of those, item-just-disappears-because-this-is-a-dream things). With the wig gone and my hair very short and a strange watery color brown, my face puffy and unfamiliar clothing on, I didn't even recognize myself in the mirror. Like, I knew it was me, clearly, but it wasn't me. It was almost a ghost of me, not all there somehow. After that moment the dream sort of melted into a new dream and on I went into my subconcious for a few more hours, but when I woke this morning, the wig dream was all I could think about.

There is probably some very profound imagery going on, but I only took one psychology class in college and I think I only got a B-.  Gonna sit with this one for a little while and see what comes up. Huh.

Saturday, April 10, 2010

Grump-master Laura

OK, so I had a whole post in mind about a really freaking cool experience I had last night at the Krishna Das kirtan concert with mah yoga friends....BUT...something happened today that has moved me instead to post a little cancer-PSA. Please forgive me for this little foray into negativity...this just bugged me enough to share. (I really will post about Krishan Das, pretty-pretty-promise, 'cause, you know, you care). Now, on to my grump-fest.

Laura's recommendations for what NOT to say to a cancer patient:

1. "My aunt/mom/friend/cousin/neighbor/someone I barely know DIED from cancer! It was really horrible...(insert horrifying story here)".  (I am not a violent person, but this one makes me want to do violent things).
2. "Well, you look good." (really? thanks? what should I look like? what does bone pain, nausea, migraine-like headaches and depression look like? this? oh, cool. I guess I'm alright then.)**sometimes this is a pretty awesome thing to say, just not after you ask how I feel and I say something resembling 'shitty'**
3. "(person's name here)'s cancer was way worse than yours." (yes, someone really said that to me. twice.)
4. "You're too young for cancer." (I always was an overachiever?)
5. "I can't catch it, right?" (um, no. you can't catch my DNA. though I have been tempted to scream YES!! and make 'boogie boogie boogie' noises while chasing the person away)
6. "Well, oh well, you (I) can't do anything about it, can you (I)." (I guess I'll just curl up and die then.)

Whew.  I understand and appreciate how hard it can be to be the person on the other side of the 'I have cancer' conversation. It's not easy and I've been there, long before I was a patient myself. Some of those things came out of my stupid mouth (mostly #2). For any feelings I hurt,  I am sorry (so, so sorry). But please, pause and think before you start flapping your jaws to someone, not just cancer patients, but anyone going through a rough time. Words sting and the impressions you make with your words last.

Thanks for putting up with my griping. Back to love and light:)

Monday, April 5, 2010

Follicle follies

Oh snap!

I will be honest here: I am very lazy about my hair. If I get a haircut once a year, it's an achievement (it's also the reason why the hair on the right side of my head is two inches shorter than the hair on the left...yeah. HOT.). So the idea that my hair will be gone in a few months seemed like a great (and lazy) reason to do something as high maintenance as dyeing it twenty shades darker. Limited touch-ups! Sweet!

There was a definite 'oh, shit' moment when the colorist came at me with her little brush and bowl of dye. This could have been a major disaster, however, I think it turned out pretty OK. Right?  It is also supremely cool that this is basically the same color as my Mom's hair. OH, Mom! She went with me for moral support (I was scared shitless) and took a zillion pictures (including one of me with goop all over my head, will post for laughs) and maybe shed a few tears with me as I watched 24 years of golden locks dissapear. She basically rocks. Thanks Mom:)

When I came home from the salon (HA!), I sat and stared at myself in the mirror for....longer than I will publicly admit. It dawned on me during that narcissession that this was a step towards releasing the connection between my physical self and my identity as a person. I am not my hair. Maybe it won't be so hard to watch my hair fall out now? I dunno, only time will tell. What I do know is that my hair may see a few more colors between now and transplant....

I will go later this week to complete more of the pre-transplant testing: a pulmonary function test and an EKG, as well as a phone evaluation by my social worker. The search continues for a donor AND I get to meet with HR at work about my employment status for next year. Will post if anything interesting happens...though it probably won't. At least I hope not.

In other news, THANK YOU. You know who you are. You are reading this right now and you are amazing. I have posted this before, but I think that saying it again is appropriate. The number of emails, text messages, comments, phone calls, homing pigeons (ok, none of those yet) in response to this blog are overwhelming. You make this so much easier. Thank you from the bottom of my heart.

Thursday, April 1, 2010

Blog and Ye Shall Receive (or something like that)

Well, only about an hour after I posted the last entry here I got a phone call from Dr. M's office about the HLA typing done on E and J.

 Drum roll please........

They are both HALF matches.

What does this mean? Well, it means that neither will be my donor due to a whole slew of complicated reasons. It also means that i will find my donor in the National Marrow Donor Registry, or the Be The Match program.  Apparently there are some possible matches for me already, but further testing and searching is needed. It will take up to three months now for my donor to be found, confirmed, retested, harvested and donated. This is not the outcome we were hoping for but there's no looking back now (and no changing the way that Mom and Pop S's bidness got mixed).  There are some advantages to the MUD (matched unrelated donor) transplant, though. So there's that.

Let's fucking boogie leukemia.

Please visit the Be The Match site for more information and TO BE THE MATCH!!!!

What did one bone say to the other bone?

Will you MARROW me?! (badum bum ZING!)

All joking aside, it's been a crazy few days. Let me share.

Dad, P and I landed in Houston on Monday night and proceeded to crash at the hotel (well, we ran to the gas station across the street for some Shiner Bock first, see end of post) to rest up for the marathon day that was Tuesday.

Tuesday went a little something like this:
We drove from the hotel to MD Anderson and snagged breakfast before heading up to the transplant floor. Sitting in the waiting room on the transplant floor was sort of like looking into the very scary future. It was full of patients and their families at different points in the transplant process, some looking very sick and others not so much. I wonder what I will look like?

Anyway, the first appointment on the (very VERY long agenda) was to see my transplant doctor and a few members of his team. We met his (my) nurse and his PA who took my history and talked a little about the transplant process. Two things occured here: One, I realized that I have 'given my history' about a zillion times to about a zillion healthcare workers and that I need to suck it up because I'm only going to give it a zillion more times. Two: and this is a real kick in the face, the results of the HLA typing done on my brother and sister, that really important test that will tell us if either one of them is a match, WASN'T SENT THERE BY THE DOCTOR THAT DID THE TEST. After a moment of freakout and then a flurry of phone calls (both the PA and I on the phone with my oncologist and the other transplant Dr. in Philadelphia at the same time) we learned that the test results 'weren't in yet'. Right. The PA informed us that the other transplant Dr.'s office, Dr. M as I will refer to him, was more than reluctant to even send the information down to MDA "just in case I come back and want Dr. M to do the transplant". Um, seriously? I had a consultation done there in October as a precaution, not because I wanted to have a transplant there, or even thought I needed one, but because that is where I was sent for the first consultation. We (my family and I) have be less than impressed with Dr. M's program in relation to my case from the start, but this was a real kicker. I feel culpable in part for the issue of the test not being available because I should have called to be sure it would be ready. This did not affect the following appointment in a huge way, we would have had to have this preliminary appointment anyway, we were just hoping for more concrete information. I also learned that medicine is highly competative, especially in the case of an 'ideal' candidate and her insurance (hmmmmmmm....). The HLA testing has to be done by MDA, even if it has been completed at another center, so again, not such a big deal, just a big pain in the ass. Kits have been sent to the sibs...we shall see.

After all of that nonsense, we finally met Dr. de Lima. Can I just say, and not to sound like an airhead, but this doctor is amazing. He was real, honest, funny, and most of all, clearly incredibly knowledgeable. Not that I would ever expect a doctor NOT to be knowledgeable, I think what I mean is that he was clearly on the cutting edge of knowledge in the field. As my dad said, anyone can tell you information, but it takes a really good doctor to make that information accessible, to make you feel like you know exactly what is happening, to be SURE that you know exactly what is happening. Let me describe to you what he did that impressed me so much (and nearly made me split my pants laughing). So, he comes in, introduces himself, gives a quick overview of what we are going to be talking about and then jumps up, grabs his chair and asks us to grab our chairs and gather around the patient table (the one that every doctor's office has). He yanks out a pen and starts writing on the paper on the patient table. Yep, writing. Oh, and drawing pictures of the process! He went through the disease process (and even acknowledged that we have probably heard this a million times), the action in the bone marrow, the risks of transplant, the various outcomes of transplant, everything. All the while, he checked for understanding (gotta love the teacher jargon) and circled back if there was anything we needed clarification on.  Also, I think he used about 7 feet of paper on that table. I wanted a pictures of that masterpiece. He spent nearly an hour with us, made jokes, he made gave us information that we didn't already have, he made it accessible (and said the word 'crappy'. twice. a man after my own heart). Best of all, he made it clear that it was my choice to have him do my transplant. It was clear that he was waiting to hear from me that I wanted this (of course making it clear that I am in a position that I do need one). So, I told him in no uncertain terms that we ARE coming to MDA, we have begun planning and we are ready. You could see him shift gears from the basic overview to the nitty gritty of my case. He was fantastic and I absolutely put my life into his hands. Hit me with all you've got, doc. I'm ready.

There was so much information that I felt like my head was going to explode. I have to say, this was one of those times where I looked at my father and husband and thanked god that I should be so lucky as to have the two of them. My dad took notes through all of our meetings and asked the questions I didn't know to ask. My husband reminded me of the things I needed to know, things we had talked about but I had forgotten about and urged me to ask them or asked himself. If you read this Dad, thank you for everything. P, I love you so much.

There was a lot of information that, had we had the results of the HLA typing, we could have delved in to, but couldn't. In a way, I'm glad we didn't because this was overwhelming enough without talking about chemo options and all that jazz. He let us know that we will need to return again before the transplant to talk about all of that, there is time. For now, we are going to proceed as if transplant isn't happening. Keep taking the Tasigna (oh yeah, back on that crap) and monitoring my levels until we have the transplant details ironed out.

After seeing Dr. de Lima, we had lunch in the cafeteria at MDA (um, seriously nice caf) and then returned to the transplant floor to see the transplant coordinator (gave us a transplant handbook), insurance coordinator (moneymoneymoney mooonay MONAY!) and social worker (where do we live?!). I'll spare you the boring stuff but I will share one shocking piece of information. Do you know how much an allogenic transplant from a sibling donor would cost at MDA if you didn't have insurance? $270,000 . Do you know how much it would cost if you needed a MUD (matched unrelated donor) transplant? $500,000. (granted, no one really pays this, it's just a number, but for REAL?!) My dad said this: "Well, the tested your tolerance for high dose chemotherapy by making sure you didn't puke when you saw those numbers".

We went back to the hotel to rest our bones and regroup after one hell of a long day. Say, I heard y'all had  some crappy weather here on Tuesday. It was 78 and sunny in Houston:) P and I took Dad out for some Texas BBQ that night. It was the least that we could do for him. We flew back in early yesterday  morning so that P could get some work done. Gotta save up that vacation time...

So here's the game plan: wait to get the results of the HLA typing, get on the waiting list for housing, get a mess of pre-transplant testing done, monitor my levels, get things worked out with the School District for next year, spend as much time as possible having fun with my husband, friends and family. Oh, there may be a change in my physical appearance coming soon too....;)

I wish that I could have shared the big news of a donor, but, the universe wasn't ready to cough up that information yet. As I said in my last post, I am overwhelmed and touched at the number of you who are following this blog. You all rock. Your support is uplifting to P and I and we love you. Thanks:)

I'll leave you with this: Shiner Bock ( and bar-b-que. GASP! a yogi who eats bar-b-que!) are two reasons why we love Texas.