Thursday, April 1, 2010

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.



  1. Laura: thank you for writing this detailed post about your consult. MD Anderson sounds like an amazing place, with amazing doctors. I'm so very glad you have this option. To be confident in and to like your doctors is critical, no doubt. I've also had similar feelings about your PA docs, and this additional delay in the sibling test reinforces those feelings for me. You may convert me into a Texas lover (well, Texas Liker anyway)! Thinking of you, as are your Roman relatives in Wisconsin & San Leandro. Love, Chris

  2. I love you Laura! And I'm so joining your blog! If your siblings aren't a match and I can spit this baby out in time, I want to be tested!! Giving my blood isn't enough! You are amazing and remind me of my brother through his battle ... your amazing outlook is truly one of the things I feel got him to his "survivor" status today and will get you there as well. Give my love to Phil! <3 Cousin Katie <3