Excuse me for the Rocky Horror reference, gotta show some Frankenfurter love. That great pause in the middle of that word seems to be exactly how I feel right now. A great pause between two things.
By this time tomorrow night my husband (sweet, sweet husband), dad and I will be safely on the ground in Houston and preparing ourselves for the mindbendingly important day that comes on Tuesday. We will finally meet the transplant doctor and his team and (waiiiiittt for it......) find out if I have a tissue match. This is so crucial to the timing of this transplant as well as the projected outcome. If E or J (the sibs, E for the sis and J for the bro, keepin' it on the DL) is a match, that means that I will receive my transplant sooner than if one of them weren't a match. It also increases my survival rate and lowers the risk of complication. Yeah, see what I mean by huge? The fact that they both agreed to be tested and to do this for me is so meaningful in so many ways that I lack the ability to explain what I feel in my heart. They have said yes to giving me a chance at living for another 50 (60, 70...!) years. The words 'thank you' don't really suffice in this situation. I will put them out into the blogosphere anyway: Thank you, E and J. You are both pretty amazing.
The timing of this transplant situation couldn't be more bizarre. We knew from the start that transplant would be a possibility, however, had the impression (hope? prayer?) that it would not occur for a decade or so. It's a difficult pill to swallow (pun intended) to find it so close at hand.
The next couple of paragraphs may not make a whole lot of sense, it is mostly a stream of consiousness. A few things I wanted to share but, well, probably aren't very cohesive. My apologies.
This weekend marked the second of four weekends in an indepth Anusara Yoga inspired training that is being taught by my vibrant and deeply generous teacher Justicia Friese. For many reasons this training is bittersweet (mostly sweet, though). I will spare you the philosophical mumbojumbo, but basically, the universe works in mysterious ways. Yoga has been a source of healing and refuge for me for several years, and now more than ever. Going so deep into my practice at a time when I am wrestling with the prospect of not having a physical practice for awhile, is a complete mindfuck (forgive the term, it fits). There have been moments in my asana (yoga pose) practice lately that have been huge milestones for me. There have been moments of intense sadness and emotion as well. Both, being related of course, have served to nourish me in strikingly similar ways. The idea of "my body won't ever do that. I just can't" is one that I held very closely (my 'story') for so long, that when all of the sudden, my body COULD do "that", I quite literally, overflowed. It's that great "what the hell comes next" moment. It's amazing how the idea of pretzeling your legs can so closely relate to the idea of having cancer (yeah, OK Laura). Both seem impossible. But when they happen, you deal. It's there, it happened, now what. Pretzeling your legs, of course, is something you work for, cancer, not so much. However, the emotional overload that can happen when something you (let's be real here) feared, happens, can bring up some serious stuff.
I will be honest and say that I did not actually think I was ever going to have a bone marrow transplant. But I am. It's here, so now what. I am afraid. It's overwhelming, it's scary, it makes me angry. The anger isn't just for me of course, it's for my husband as well. I'm going to do the "it's not fair" thing here and say that it isn't fair to P (the hubby) to be saddled with this crap at 25. However, life isn't fair and fear and anger never helped anyone. It's like the legend Justicia shared in class this weekend (can be found here if you are interested). Sometimes, when you try too hard to slay your demons (fear, anger) , more just crop up. It's only when you take those demons in, let them nourish you, that the demons become something, well, less demonic. You just shift the energy rather than try to get rid of it. Maybe cancer is like that too? If you try to hard to make it go away, it finds a way around the treatment. Of course, cancer can be killed (slayed) by chemo, but the cells aren't all there is to cancer. There is the emotion too, an often overlooked but hugely important thing. By taking it in, feeling the fear and anger and then shifting that energy into living, I can make it through this. WE can make it through this. Maybe this is what I mean by coming to this experience in a yogic way. A friend said to me this week that you don't need to physically do the asana to practice yoga. She was so right and so profound in that statement. I can only hope that I can live up to this and that it isn't just something I post on this blog. A new adventure, a new practice, a new question, right?
Finally, I really want to say how moved I am at the response I have received in starting this blog. Thank you for reading and THANK YOU for your support. It sounds so cheesy and cliched, however, I don't have words for what it means to read your comments and texts.
Will update, the BIG update, later this week.
Much love.
Sunday, March 28, 2010
Thursday, March 25, 2010
Holy Bananas! That's one long post!
The next logical step in this blogging thing would probably be to explain how I got here (not in a birds-and-the-bees kind of way... a clinical, oncology sort of way). So, here we go. (This is the insanely short version.)
In December 2008, I was diagnosed with a kind of cancer called Chronic Myeloid Leukemia. It was caught by a blood test ordered by my allergist after she couldn't figure out why I had a recurring rash on my face. Remind me to tell you the story of my diagnosis someday. It's a real hoot. NOT.
CML, as it will henceforth be known, is typically found in 55 year old (and up) MEN. Right. As terrifying as a diagnosis of leukemia was, the reassurance came in the discussion of treatment. CML is treated with an oral chemotherapy (targeted therapy to be exact) agent called Gleevec. It comes in pill form and I started taking it within four days of diagnosis. Gleevec was both a magic pill (and a BLESSING) and a huge drag. I started taking it in the hospital and it worked immediately while also making me yak my brains out (hey, this is a cancer blog, TMI is assumed). Gleevec has only been on the market for treatment of CML for about ten years, which makes it that much more amazing. Before that time, patients endured a variety of nasty therapies, bone marrow transplant (the only curative measure) included. Gleevec was the first treatment to work on the cells carrying the Philadelphia Chromosome (CML causing cells) without debilitating the patient. G also took CML from the realm of "you are very fucked if you get this" cancer to almost chronic disease.
Basically, leukemia causes an elevated white blood cell count and Gleevec began lowering mine within the first 48 hours and I reached 'normal' levels within 6 weeks. I spent about 11 months on Gleevec and during that time I was pulled off of the drug for a variety of reasons, nausea, thrombocytopenia, or low platelet counts, being the most nagging of the reasons. More on those issues later.
In November of 2009, I underwent my second bone marrow biopsy (the first was done a few days after my initial diagnosis to confirm CML) which revealed some inconsistencies in my bone marrow. Basically, CML is caused by a gene called the Philadelphia Chromosome (ironic, eh?), or Ph+, and when they do bone marrow biopsies, my doctors are able to track my disease based on the presence of this chromosome. Two of the tests for the Ph chromosome came out with wildly different results. Based on these findings, I was sent to a doctor at MD Anderson Cancer Clinic in Houston, TX. After four months of what can only be described as an insurance company clusterfuck (whew, I like that word. sorry, mom), we made it down to Houston with my amazing and unbelievably supportive parents.
To back track, after that biopsy in November, I was switched to a drug called Tasigna because my doctor felt that G had stopped (or never) really worked. if Gleevec was a drag, Tasigna was, well, a really big fucking drag. Within four days I was curled up in a ball in bed with the worst muscle pain I've ever felt, my first migraine (yippy!) and the spins. Cool. Oh, did I mention the rash that appeared all over my face and body? Yep, it looked like I was covered in little hives. THEN Tasigna caused my platelets (the little sticky cells in your blood that keep you from bleeding to death) to crash to dangerouly low levels. Just like G, I was pulled off of the drug but this time spent more time off of Tasigna than on it.
At any rate, the doctor that I was sent to see in Houston conducted the clinical trials for Tasigna. It was suggested that he would be able to figure out the inconsistencies in my bone marrow testing and recommend what treatment I should continue on, bone marrow transplant being a distinct option for a variety of reasons. After undergoing ANOTHER bone marrow biopsy in Houston, it was determined that I need to have an Allogenic Stem Cell (bone marrow) transplant "ASAP". Yeah, he really said ASAP.
In a BMT (bone marrow transplant, are you sick of acronyms yet?), you receive donated marrow from a 'matched' donor, usually a sibling, which repopulates your bones. The patient's marrow is first killed by high dose chemotherapy and sometimes radiation and then the new, donated marrow is given in the form of a transfusion. The smart little bone marrow, also known as stem, cells (not the super controversial stem cells), find their way to your hollow bones (he, he:)) and grow you new, healthy marrow. Pretty flipping amazing if you ask me.
This is where we are. My siblings have been tested (and man are they cool for agreeing to do this for me) and in a few days time, my husband and my dad and I will be traveling back to Houston to work out more details about the transplant and find out if the little bro or little sis are a match. This is super scary but I'm also very hopeful. I've been told that I am the "ideal" candidate for this procedure based on my age and general health (daily handstands will do that). Oh, more on those handstands later.
That is the quick and dirty version of why I'm here and why you're here and why the next year of my life is going to be really effing interesting. Please excuse the ridiculously long post. I just scrolled up the page and had a thought that anyone who would read all of that must really like me, so, thanks!
I'll try to update this thing as often as possible and maybe even toss a few pictures up as well. Who knows! Thanks for reading!
In December 2008, I was diagnosed with a kind of cancer called Chronic Myeloid Leukemia. It was caught by a blood test ordered by my allergist after she couldn't figure out why I had a recurring rash on my face. Remind me to tell you the story of my diagnosis someday. It's a real hoot. NOT.
CML, as it will henceforth be known, is typically found in 55 year old (and up) MEN. Right. As terrifying as a diagnosis of leukemia was, the reassurance came in the discussion of treatment. CML is treated with an oral chemotherapy (targeted therapy to be exact) agent called Gleevec. It comes in pill form and I started taking it within four days of diagnosis. Gleevec was both a magic pill (and a BLESSING) and a huge drag. I started taking it in the hospital and it worked immediately while also making me yak my brains out (hey, this is a cancer blog, TMI is assumed). Gleevec has only been on the market for treatment of CML for about ten years, which makes it that much more amazing. Before that time, patients endured a variety of nasty therapies, bone marrow transplant (the only curative measure) included. Gleevec was the first treatment to work on the cells carrying the Philadelphia Chromosome (CML causing cells) without debilitating the patient. G also took CML from the realm of "you are very fucked if you get this" cancer to almost chronic disease.
Basically, leukemia causes an elevated white blood cell count and Gleevec began lowering mine within the first 48 hours and I reached 'normal' levels within 6 weeks. I spent about 11 months on Gleevec and during that time I was pulled off of the drug for a variety of reasons, nausea, thrombocytopenia, or low platelet counts, being the most nagging of the reasons. More on those issues later.
In November of 2009, I underwent my second bone marrow biopsy (the first was done a few days after my initial diagnosis to confirm CML) which revealed some inconsistencies in my bone marrow. Basically, CML is caused by a gene called the Philadelphia Chromosome (ironic, eh?), or Ph+, and when they do bone marrow biopsies, my doctors are able to track my disease based on the presence of this chromosome. Two of the tests for the Ph chromosome came out with wildly different results. Based on these findings, I was sent to a doctor at MD Anderson Cancer Clinic in Houston, TX. After four months of what can only be described as an insurance company clusterfuck (whew, I like that word. sorry, mom), we made it down to Houston with my amazing and unbelievably supportive parents.
To back track, after that biopsy in November, I was switched to a drug called Tasigna because my doctor felt that G had stopped (or never) really worked. if Gleevec was a drag, Tasigna was, well, a really big fucking drag. Within four days I was curled up in a ball in bed with the worst muscle pain I've ever felt, my first migraine (yippy!) and the spins. Cool. Oh, did I mention the rash that appeared all over my face and body? Yep, it looked like I was covered in little hives. THEN Tasigna caused my platelets (the little sticky cells in your blood that keep you from bleeding to death) to crash to dangerouly low levels. Just like G, I was pulled off of the drug but this time spent more time off of Tasigna than on it.
At any rate, the doctor that I was sent to see in Houston conducted the clinical trials for Tasigna. It was suggested that he would be able to figure out the inconsistencies in my bone marrow testing and recommend what treatment I should continue on, bone marrow transplant being a distinct option for a variety of reasons. After undergoing ANOTHER bone marrow biopsy in Houston, it was determined that I need to have an Allogenic Stem Cell (bone marrow) transplant "ASAP". Yeah, he really said ASAP.
In a BMT (bone marrow transplant, are you sick of acronyms yet?), you receive donated marrow from a 'matched' donor, usually a sibling, which repopulates your bones. The patient's marrow is first killed by high dose chemotherapy and sometimes radiation and then the new, donated marrow is given in the form of a transfusion. The smart little bone marrow, also known as stem, cells (not the super controversial stem cells), find their way to your hollow bones (he, he:)) and grow you new, healthy marrow. Pretty flipping amazing if you ask me.
This is where we are. My siblings have been tested (and man are they cool for agreeing to do this for me) and in a few days time, my husband and my dad and I will be traveling back to Houston to work out more details about the transplant and find out if the little bro or little sis are a match. This is super scary but I'm also very hopeful. I've been told that I am the "ideal" candidate for this procedure based on my age and general health (daily handstands will do that). Oh, more on those handstands later.
That is the quick and dirty version of why I'm here and why you're here and why the next year of my life is going to be really effing interesting. Please excuse the ridiculously long post. I just scrolled up the page and had a thought that anyone who would read all of that must really like me, so, thanks!
I'll try to update this thing as often as possible and maybe even toss a few pictures up as well. Who knows! Thanks for reading!
First(ish) Post
Hello!
The idea of starting this blog has been hanging around the dusty corners of my brain for awhile now and I finally figured, what the hell, now is as good a time as ever, right? I tried to start a blog a year or so ago but I didn't really have anything to say, so it sat in sad, neglected, internet forgotten-dom for months until I finally deleted it (yeah, ten minutes before starting this one). This time however, I actually have something to write about....though in all honesty, I wish I didn't have THIS something to write about.
The purpose of this blog is to help me document my journey through an Allogenic Stem Cell (Bone Marrow) Transplant for the treatment of Chronic Myeloid Leukemia. I hope to use it as a means to keep in contact with my friends and family in Philadelphia after our move to Houston for the transplant and following recovery. I also felt like it would be a good idea to have something to commit to doing everyday (or at least every few days) as I go through this process. Something to focus on, I suppose. Even in writing this first post I am discovering that it is very difficult to pull what is in my head out and put it in writing. Please forgive me if my posts are unintelligible, scattered or otherwise horrible. I'm trying, I promise:)
My hope is to approach this journey in a positive way, maybe even a yogic way (CAN you approach cancer in a yogic way?). Time will tell, I guess. This is not to say that I don't anticipate bitching and whining a little bit....forgive me for that as well?
Thank you for following and awwwaaaay we gooo!
The idea of starting this blog has been hanging around the dusty corners of my brain for awhile now and I finally figured, what the hell, now is as good a time as ever, right? I tried to start a blog a year or so ago but I didn't really have anything to say, so it sat in sad, neglected, internet forgotten-dom for months until I finally deleted it (yeah, ten minutes before starting this one). This time however, I actually have something to write about....though in all honesty, I wish I didn't have THIS something to write about.
The purpose of this blog is to help me document my journey through an Allogenic Stem Cell (Bone Marrow) Transplant for the treatment of Chronic Myeloid Leukemia. I hope to use it as a means to keep in contact with my friends and family in Philadelphia after our move to Houston for the transplant and following recovery. I also felt like it would be a good idea to have something to commit to doing everyday (or at least every few days) as I go through this process. Something to focus on, I suppose. Even in writing this first post I am discovering that it is very difficult to pull what is in my head out and put it in writing. Please forgive me if my posts are unintelligible, scattered or otherwise horrible. I'm trying, I promise:)
My hope is to approach this journey in a positive way, maybe even a yogic way (CAN you approach cancer in a yogic way?). Time will tell, I guess. This is not to say that I don't anticipate bitching and whining a little bit....forgive me for that as well?
Thank you for following and awwwaaaay we gooo!
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