Friday, August 21, 2009

Pre-treatment reflections. Brought to you by PBS Kids.

I have a few moments to blot a few things down (blot = blog + jot... I just made that up) because I have a free moment I'm blatantly ignoring my child. (Hey, judge all you want... my 21-month-old is learning Spanish via Dragon Tales and I am maintaining my sanity. Everyone wins.)

So obviously, treatment begins soon. We're getting things ready around here, trying to prepare ourselves as best as we can. But we're also having to prepare a couple of kids who know nothing of cancer or sickness or hospitals. (Well, except for that one time.) We've decided to keep Ocean enrolled in preschool despite the germ factor, but have notified the appropriate folks at the preschool that we will likely have to pull him out temporarily once Phil has his transplant. I want things to proceed normally for the kids, and since we've been talking about school with Ocean for a long time it would break my heart to tell him he can't go. Plus, as my dear friend pointed out to me yesterday, I'll definitely be able to use a few hours a week with just one child, and it will be good to separate the kids a couple mornings a week, being that they butt heads so readily and emphatically. We've started telling Ocean that Daddy will cut his hair soon, and we talk about how Daddy goes to see his doctor in order to stay healthy so that he can keep playing soccer with Ocean. It's all very casual at this point, but it's setting the stage for more serious discussions, should we need to have them.

So that's that. 

And now, please climb aboard the Emotional Journey Express as I take you through the last 24 hours worth of thoughts in my mind. Scary, I know. Buckle your seat belts. And put on a helmet.

Yesterday we learned of someone who was diagnosed with lymphoma. My reaction wasn't as strong as I expected it to be, which bothered me. I began thinking back to each time I have received news that someone was diagnosed with cancer and I can remember feeling overwhelmingly shocked and afraid and sad. And while I still felt sad this time, I didn't feel much of anything else and I stewed about it all day, trying to figure out what was different here.

And then somewhere between making a pasta salad and trying to win another coupon on Old Navy Weekly it hit me. Our innocence was lost with Phil's diagnosis. We quickly realized that no one is immune and no one is safe and no one lives forever. Our bodies fail us and we can blame people or the environment or society or science or God or the devil or whatever but that doesn't stop the sickness or the pain or the death. At some point this all ends. Which is a crappy conclusion to come to when we're 29-and-holding and should be thinking about shallow selfish crap like what we're doing this weekend, or ridiculous parental crap like how to hide vegetables in cheese or chocolate milk, or fairly significant crap like supporting friends who are going through different but equally pressing situations, or everyday crap like washing dishes and paying the bills. All of those things still go on of course, but we exist on a different plane now. The plane where we grew up faster than we wanted/expected to and are no longer surprised when we hear terrible news. 

So then I started thinking about all of you, each of you, the people in our lives, and how you must have felt when we shared our news with you. And then I cried, because I remember very well what it felt like to hear that kind of news, back before it was our news to share, and I wanted to hug each of you because I know- I KNOW- it's a hard burden to bear. And you all have stood by us despite your own fear or sadness or anger or shock or not-knowing-what-to-say-or-do... and that's awesome. And very, very hug-worthy.

And then I started to remember how lucky we really are. Not the cancer part... we drew just about the shortest straw possible there. But most people with multiple myeloma are diagnosed at a later stage and thus need to begin treatment right away which is not the case with us; and for that we are grateful. We're pretty darn fortunate to have known about this for a year. I'm so glad we've had plenty of time to allow everything to sink in. I'm relieved that we will have had a couple of months to prepare ourselves for treatment to begin. And that I have time for this introspection and reflection. Most importantly, I'm glad we've had time to find hope in what was initially perceived as a hopeless situation. We're in a good position in spite of our circumstances and, while I've had a difficult time reconciling all of this with my faith in God, I can't deny what I recognize to be a little extra help from him in a less than ideal situation. 

It's hard to write a blog post about Feelings, not because I fear being vulnerable (If you know me, you know I hide nothing and I tend to over-share to the point of grating awkwardness. It's a gift, really.) but because I don't want to come across as a Susie Sunshine or a Martha Martyr or an Ursula Unstable as much as I just want to document this process, for us but also for anyone else who is frantically Googling (or, if you're cool, Swagbucksing) "Multiple Myeloma" like we were a year ago, trying to find an ounce of honesty or hope or reality or... something. Something.

The problem with writing it down is that it's hard to get across what's really going on internally, mostly because it changes all the time. I guess the takeaway is that I still don't see a grand Purpose in any of this, and maybe I never will. But thankfully we're Take-One-Day-At-a-Timers so that doesn't even matter. We're just continually putting all of this in our Life Lesson Bank and plugging ahead, powered by all of the Love that surrounds us.

That, dudes, is one lesson even PBS Kids can't teach.

Hope you're all shiny and happy.

Wednesday, August 19, 2009

I consent.

Tomorrow at 7:45am I will consent to a clinical trial that is almost all filled up (two more spots left).  This will secure us a spot for when we return back from our family vacation in North Carolina. chemo drugs! Thanks MMRF! 

I still can't imagine a shaved head.....weird. 

Saturday, August 15, 2009

Time to work on my Kick!

(Phil speaking)
I think about my cancer about .00138% of the time, which is probably aboutt 1 minute every 13 days give or take some math. The reality is that the cancer is present in me roughly 100% of the time looking to find its way in my body, primarily my bones. 

If you have been following along you know that three years ago (Aug 2006) while living in Charlotte, NC we were caught off guard by a Pulmonary Embolism in my right lung, which can be very deadly. The following year after a return to Ann Arbor I had two more blood clots, one in my left leg and a second in my right. Two years after the PE (Aug 2008) we learned that the recurring blood clots in my body had a partner in crime called Multiple Myeloma, a cancer of the plasma cell that originates in the center of your bones. And now three years later (Aug 2009) we have learned thanks to some help from our peeps down at UMAS hospital in Little Rock that the cancer isn't smoldering, but actively spreading. What's with the month of August anyways?!?! Can't we just reserve this month for the good news of the birth of Phil??? ;)

I have heard it is good to keep your mind off of your disease so you can continue to live your life fully and I guess that is what I have been doing naturally. I mean who starts a business during the worst economic times just months after they find out they have a serious cancer stewing around? I think it's in the core of my DNA to keep dominating because it's all I have ever known.

So what about dominating cancer? Well, since the blood clots and the diagnosis I have naturally not thought about the health issue staring me in the face, partly because I still feel great! The reality is that over the last year the cancer went from just over 10% in my bones to 30%, so it seems to be doing just great too! 

I am sensing that it's time to kick it....what do you think? I have been much more conscious about eating colorful vegetables, which is harder than you think for a vegetarian with the assortment of carbs that flow through a supermarket. Cassie has been a champ though and I am eating better than ever! So the diet is where it needs to be and I have returned to dominating water which is really crucial in keeping my kidney from getting wrecked by the excess protein (and potential calcium) floating around in my blood stream. start kicking it, I am going to go back to my roots and work on my kick. Not my football kick, but my running kick. Thanks to my running buddy, I have been consistently running one day a week. To put my feet to the fire I officially signed up for the Big House Big Heart 10k run on 10/4, which  may be my last weekend of my treatment free self!  I still have the belief that my disease can be supernaturally dominated and we have a couple of months for that to happen!

If you ever want to go for a run, just give me a ring! I have a lot of work to do....and I can't do it without the influence of others. Thanks!!!!