Tuesday, July 27, 2010

Save the date...but without the joys of a wedding cake and cocktail hour...

Ladies and Gentleman....

We have a date!!!!!!

After MONTHS of waiting, MONTHS of hugs, needles, tears, screaming, thrown handfulls of ice cubes, jumping at the phone, total grumpitude....we have a date.

Here's the down low:
August 11th- P and L depart Philadelphia
August 12th-?- L goes through a battery of tests: echocardiagram, EKG, pulmonary function test, CAT scan of my sinuses and the rest of my noggin', chest xray, bone marrow aspiration and biopsy, and finally, the placement of my central line (triple lumen) in my chest.
August 19th- sign-in to the hospital
August 20th- Admission to the hospital
August 21st-24th- chemotherapy (busulfan and fludarabine)
August 25th & 26th- ATG infusion for me and the donor will have their collection on the 26th
August 27th- TRANSPLANT! (one friggin' month from today, holy hell)

Whew. There is is. Months of anticipation and....there it is. What am I feeling? Scared. Fucking. Shitless. Sad. Angry. Anxious. Confused. Take your pick.

What I can say in this moment is that these last few stolen weeks of summer have better prepared me for this than anything else in the last year and a half. After re-reading may of my posts and reflecting on them, I realized that I haven't stuck to my promise about blogging about the yoga of cancer. During class, I often compose whole entries in my mind, but by the time I get home I can't recall what I wanted to say. In the moment after I hung up the phone with Michelle, my transplant coordinator (who has just the coolest thick Texas drawl), I took the deepest breath and most cleansing exhale of the last six months. And there it is. The yoga of it. The breath.

My dear friend and teacher, Justicia, has said this many times in class, to come back to the breath, to enjoy the breath. How often have I actually ever purposfully done this? How often have I ever turned to the breath because everything else has been stripped away? Meh, not very often. Well, today may have been the first true moment of that, and hopefully the first of many. It must be my goal over the next few months to remember what the yoga really is. Not bending and twisting and balancing like a monkey. It's the breath. In. Out. In. Out. Constant. Unifying. Completely human. To focus on that which links me to my body, the earth, generations before me, the yoga. Breath. You cannot scream without inhaling. And oh boy, do I just want to scream.

On a final note in this post, I want to give another shout out to Justicia, her dear wife Shawn and good friend Jadee. This past Saturday, they allowed me to accomplish something that I have wanted to do since I started practicing yoga in a dedicated way: have photographs of myself in some favorite poses. My whole life I've struggled, like so many women, with body image. Too fat. Too muscular. Too short. Too pale. One thing that yoga and cancer have taught is that this body, whatever shape it's in, is my vehicle. It was formed this way by the combination of genetics given to me by my parents. Shaped by my daily actions and fueled by what I feed it. It may not look like Angelina Jolie, and that's ok because Angelina Jolie doesn't look like me. Justicia, Shawn and Jadee spent a few hours of their day with me on Saturday coaching me into poses, taking gorgeous pictures and just basically filling the room with awesome. At first, I wasn't going to post those pictures anywhere because I didn't want anyone to see my....fill in the blank. Then I realized that NOT posting those pictures, sharing them, perpetuated the self-loathing. Hey, yeah, I have a fat roll there. Yep, my hair looks wonky. But you know what? The people responsible for taking those pictures, and for the journey of opening my body into those poses, are what makes posting them so worthwhile. So, I posted my favorite few to my facebook (feel free to add me:) )I might post a few here, I may not. I have a suspicion that they will be hard to look at in a few months, so, we'll see.

There will likely be a flurry of posts over the next few days and weeks. Stay tuned and stay awesome. And thank you. Always, thank you:)

Tuesday, July 20, 2010

A dedication and a request

This post is humbly dedicated to a strong, inspirational young man named Craig. Some of you may have watched his episode of MTV's True Life: I'm Having a Transplant which aired several months ago (it is available on MTVs website to watch as a streaming video). If so, you have an idea of what this young man has been through and of is strength and courage.

Craig is 26, married, battling Acute Myeloid Leukemia and is now in the end stages of his life. He has shared nearly every step of his journey from diagnosis to transplant to learning that his transplant failed and now from this life, into the next life. He has been broadcasting live from his hospital bed the last week or so and I have been watching every moment. He has given inspiration and perspective to so many, myself included. If you are friends with me on facebook, you may have seen the link I posted a few days ago, but it is so, so worth posting here as well.

If you believe in prayer, or setting an intention, or sending energy....anything at all...please send some into the universe for Craig. He is leaving behind his wife, also 26,  of only a year and a half and mountains of medical bills. Please consider not only reading his blog or checking out his live broadcast, but also his request to donate for his wife and to join the Be The Match registry (if you read this blog and you haven't joined the bone marrow registry by now, may hoards of beetles scare you in the shower for the next thousand mornings...or something horrible like that).

Wishing you, Craig, peace, happiness and comfort....and of course...and always....a miracle. Many thanks for your gifts.

Here is is blog:

Sunday, July 11, 2010

A Happy Post

I didn't want to include this in my last post because, well, I have that control, don't I? ;)

One year ago today, P and I became husband and wife. The vows we took have held so much meaning over the last twelve months and I have every faith that they will continue to.  He is an amazing man, supportive, loving, handsome, hilarious, brilliant, more than I could have ever dreamed of in a husband, a best friend.

Thank you, Phil. I love you now and forever.

An exercise in surrender

If there is one thing P and I have learned over the last 19 months, it is that nothing is EVER set in stone in the world of oncology. Things change rapidly and one must be prepared for a change of plan (or to set on the brakes) without attachment to the "original plan" or "what they said". Oh boy, have we learned this one. So, that being said, we were not entirely shocked when we were informed by Dr. deLima that there is has been a 'hold up' with the insurance company. Yeah, again.

We went to Houston this past week with the expectation that we would be setting a hard and fast date for my admission to the hospital and for the transplant itself. Not so much. It turns out that, due to the July 4th holiday, my case manager with the insurance company was on vacation and thus did not yet approve my donor. This means that the donor has not been given dates to choose from for the bone marrow harvest which means that I have no date for transplant yet. While this is a HUGE pain in the ass for someone as type A as myself (what do you mean you can't answer every single one of my questions RIGHNOW? what do you mean this isn't completely organized RIGHTNOW?), it does not change the overall timeline for the transplant process. We are still looking at moving down to the Lone Star State at the end of this month and going to transplant at the beginning of August.

So, on to the really juicy stuff: the transplant itself. The bulk of the conversation had with Dr. de Lima revolved around what sort of transplant I will have. "What sort of transplant" you say? "Um, isn't there only one- a bone marrow one?" you say? Well, yes and no. Yes, I am receiving a bone marrow transplant (none of my other transplantable organs have crapped out...yet) but the 'what sort' part comes in when we start looking at the preparative regiment, or chemotherapy, part of the picture.

There are, essentially, two types of preparative regiments used in the BMT world: a traditional, full intensity transplant (which uses high doses of chemotherapy and sometimes radiation to completely wipe out all of the patient's own bone marrow cells before introducing the donor cells), and a reduced intensity transplant (which uses lower doses of chemotherapy than the traditional regiment and no radiation to kill most of the patient's own bone marrow cells before introducing the donor cells). The idea behind the reduced intensity transplant is that, by using less chemotherapy, the transplant process is not only less toxic to the patient, but the donor cells are given a chance to work on the patient's cells in a process known as "graph-versus-leukemia effect" and finish the job that the chemo started.  Basically, the donor cells attack the left over host cells (cancer cells included) and set up shop. This type of transplant is heavily used at MDA because of the reduced risk to the patient.

 When comparing these two types of transplant, there are definite risks and benefits to both which, in the end, roughly weigh out evenly, in my opinion at least.  My doctor here, along with another doctor whom P and I met at PENN two weeks ago, are big proponents of the full intensity transplant for me. Dr. de Lima, and as I said, most of MDA, err on the side of the reduced intensity transplant. Where does this leave me? Well, with a choice.

In most parts of my life, and I'm sure you'll agree in yours as well, I prefer to have the control of choice. Nail polish colors, cream cheese flavors (plain? salmon? maple walnut?), shampoo (volumizing, shine-enhancing, color protection, whatever the hell else I was advertising-zombied into buying), yoga pose variation (why yes, I WOULD like to try that arm balance on one hand, thank you very much), you get the idea. However, may I just say that in the case , I would NOT like to make this choice.

On the one hand, I am strong and healthy. I work hard to stay strong and healthy: yoga, eating well, not smoking crack, all ways to stay strong and healthy. The full intensity transplant would be harsh, bring me to my knees and nearly kill me. This I know. What I also know is that the full intensity transplant, I run the risk of life-long complications that would keep me not-so-healthy or dead. I would like to stay in, or at least be able to return to, my general state of health and activity. This is very important to me. The reduced intensity transplant would possibly allow me to return to my general state of health and activity quickly and more fully. My organs may not be as damaged, if at all and the mortality rate is slightly lower.

On the other hand, I have cancer. I do not want to have cancer. I do not like having cancer. It sucks. This we all know. The full intensity transplant leaves nearly no chance that the CML could return. The drugs haven't worked for me, thus why we are going down this road. There is a higher chance that the CML could return with the reduced intensity transplant. Dr. de Lima said, and I quote, "If we do the full intensity transplant, and it doesn't work, you'll be pretty roughed up. If we do the reduced intensity transplant, and it doesn't work, you'll leave here basically the same as you came but a little worse for wear". Yes, this should comfort me. However, it does not. I would rather have gone balls to the wall and have it not work than be a wuss and end up, well, still a fucking cancer patient.  But, I do like my lungs, heart, kidneys and liver and want them to work for the next, oh, fifty years or so (my skin and GI tract are pretty cool too and I do not want those effed up either). I like the life P and I have. Hell, I like life.

This choice is not one that needs to be made right now, I have some time, a few weeks at most. If it sounds as though have a clear point of view, or am leaning towards one over the other, I do not and I am not.  This information has kept me up worrying for the last several nights. We will be seeing Dr. Raj and speaking with a few more oncologists in the time that we have to gain as much information as possible. It must be said though that there is a reason we are at MDA and I trust my team there with my life. They are the best in the world and will do well for me.

There is one more piece to this story: clinical trials. There are, at the moment, two clinical trials for which I am eligible. One is a trial of a combination of three chemotherapy drugs, one of which is new, in a full intensity preparative regiment. This is not a trial that I would like to participate in. 'Nuff said. The second, and more interesting, one is a trial of a post transplant drug which woudl be used after a reduced intensity preparative regiment. It is a low dose chemotherapy, given in four rounds intravenously, after transplant in order to help rid my body of any residual Philadelphia Chromosome (Ph+) cells. This drug carries risks with it, as all do, but the trial is interesting, even if it was not designed for CML. It is possible that I may, in the event of reduced intensity transplant, sign on for this trial. It is always possible to pull out at the last minute or discontinue participation if problems arise or participation becomes unnecessary (if I test negative for Ph+ after transplant).

There are many choices to be made here and not much time to make them. P and I will hold off on serious consideration of any of the above until after we hear from MDA this week with more information and some possible dates. The last few days have been exaughsting, to say the least.

Thank you for your support over the last week (month, year). The text messages, e-mails, facebook posts have been invaluable. In a time where P and I feel (mostly I feel) very alone, you have made us feel surrounded by support. Thank you:)

Tuesday, July 6, 2010

Anger, honesty and scaring the cats

You ever get so angry that all you want to do is break something? Not just throw your phone angry, or slam a door angry, but something along the lines of take a baseball bat to a car angry. Where the only thing you can rationally think to do in that moment is feel the control of shattering something. Destroying something. Hearing the sound of something being irreparably damaged. SEEING something being irreparably damaged.

Yeah, me too. That's how I woke up this morning. What set me off? (besides another sleepless night and a head cold during a heatwave...and you know...cancer) The sound of my husband's shoes and the absence of coffee in my kitchen. I shit you not. Shoes and coffee. What was my completely rational response to standing in my kitchen and finding no coffee in the coffee bag? Spike a hand full of ice, obviously. Ice. A hand full of fucking ice. Why ice? Well, it's what I had in front of me. The glasses on the counter looked tempting of course, I'm sure it would have been very satisfying to spike one of those wine glasses in the parking lot out back, however, I had a flash of concern for having to clean it up (I'm sure my father-in-law/landlord will appreciate that I did not do this). And didn't want to hurt the cats. So, ice it was. A big hand full of ice. Right on my kitchen floor as hard as I could. The cats were properly scared back under the bed (sorry guys) and you know what? I didn't feel a damn bit better. In fact, I felt a whole lot worse.

Tomorrow, P and my mom and I are flying down to Houston for the last time before the big move to meet with my transplant team. It is absolutely clear to me that my freak out is a result of stress. That I am not coping. That this anger is not rational. It's not the way to deal with this situation and it's only going to make me more toxic to myself. Yep, I know this. Do any of those words help at all right now? NOPE. If I'm being honest, which I am trying harder to be here (blogging the truth is easier said than done), the truth is that knowing that I'm being irrational, knowing that this is not the right way to respond, having the tools through my yoga practice to deal with this in a better way, make this a whole lot fucking harder. It's like a pressure to respond correctly when in the moment I just want to break something and I don't care if it's right or wrong. That's probably why I felt worse after scaring the ever-loving shit out of Ike and Hope (eh, the cats). Does that change the fact that I did it? Nope. Will I wake up again and feel this another day? Of course. I'm telling myself that this is normal and that it will pass, but that I'm going to need to address this at some point. Yes, I have a lot of internal work to do, but for now, I'm going to back off of myself (and away from the ice tray) and sit in this anger for a little bit. Maybe it will help me recognize the good moments. Maybe it won't. Right now I don't care.

After my early-morning temper tantrum in my kitchen, I dragged my sorry ass out of the house, into the heat and off to yoga class. What was the theme in today's class? Breathing into the difficult moments, the difficult situations and focusing on responding not reacting. Hey universe, back off. I know. This class was one of the more emotionally difficult to get through in a long time. I put my head down, closed my eyes and dug in. It's hard to face the truth. To have the mirror held up. It's unpleasant but necessary. Maybe that's why I haven't been consistently (and meaningfully) blogging lately. It's a mirror. After class I did feel like I had wrung out some of my crap, a lot is still there, hanging out, but a bit was skimmed off the top.

About an hour ago, the universe reached out to me again. Twice in one day ain't bad, eh? So here's the deal: I hardly check my work e-mail at home. Why should I? Especially because it's July and I won't be working for the next year. Well, this afternoon, I felt a compulsion to check it. In my mailbox was one new message. This message was from the mother of a very special little girl, sweetly thanking me for a CD I sent home for her daughter to practice with, complimenting me on the winter music assembly and wishing me a nice spring. That kicker? That last bit about spring. Though the message was received in my inbox yesterday, it was composed and sent by this parent at the end of April. This message was floating around in the cyberverse for two and a half months and finally found me on a day when I desperately needed a boost. Hey universe, I take that back. Thank you:)

The next few days will bring a flurry of activity and news, I will post the details as the week goes on. Stay cool, East Coast!!

Friday, July 2, 2010

Bucket List....of sorts

In the week since school let out for summer, I've found myself compiling a bucket list of sorts. Allow me to make this clear: I DO NOT EXPECT TO DIE. Righto. Call it a coping mechanism (I will, especially because it's easier to admit to than the number of cocktails I've enjoyed in the last week...oops, did I just make that public?). It may be true that it feels as though I need to cram in as many experiences a possible before this transplant, however, what has become clear is that I rather enjoy grabbing life by the balls. If you have known me for a while, as in, before this whole cancer nonsense, you may know that I am...a chicken. Easily embarrassed, shy (no really, I promise) and a bit of a homebody. When one is faced with the distinct possibility that one may never be the same again, things change a bit.

With that said, her is a short list of "firsts" in the last week. Some of these are things I've always wanted to do, some just happened spontaneously, some aren't even "firsts" or "onlys"- just fun and most are very, very stupid. Away we go.

- spent an entire day in bed watching trashy television reruns
- pickled something (tomatoes, they were delicious)
- sang karaoke solo. in public. (show tunes. Cabaret no less, it was....horrifying).
- purchased an item from a high-end designer (Betsey Johnson, $30 earrings...dream big, right?)
- attended yoga class everyday for a week- not a first, just hasn't happened in a long time. this felt particularly indulgent :)
- as a result of ^: touched my foot to my head in a new pose (WHAAAAAA!!!)
- saw a matinee movie with a friend
- spoke my heart and mind in a difficult situation in a non-confrontational way (I would say that this was the biggest moment for me this week. The situation is a complicated one and the words were difficult to say, but in the end, it was the right thing to do. The circumstance would not be appropriate to share here at the moment, please forgive me. Maybe one day it will be.)
- bought a pair of insanely large sunglasses ($3!!!!)....and wore them in public.

Next up??? Horseback riding! Stop laughing...I'm not kidding!:)

Happy 4th of July, y'all!