01 November 2013
The pain left me on Friday. Or rather, the BIG guns of pain packed their bags and quietly walked west towards the setting sun. More pain followed throughout the weekend but it was more like a mosquito buzzing – not the knife wielding ax murderer who had inhabited my body since the previous Friday. I had been on a drug for 5 days and was told it would take an additional two or three days for it to work it’s way out of my system. So if you’re keeping track it was eight days of serious, at moments debilitating, pain. I wasn’t prepared for the immediacy of it all, either. I was told I would get my first round of puppy like shots but wouldn’t feel anything until the end of the weekend. They were wrong. As I sat at the dinner table at a hotel in Andover, Massachusetts I could feel my thighs beginning to scream. I thought at first I was sore from my previous days bike ride of ten (hilly) miles. I would have biked longer but I almost got hit by a car and having someone’s life in your hands make one think – clearly not enough to keep me off my bike but at least I didn’t push it – or at least I read the sign that said ‘go home now before two lives are lost’. My body was beginning its hyperactive production of white blood cells that would save the life of a fifty-seven year old woman somewhere in the world.
In order to get my body to produce lots of white blood cells I was being injected with Neupogen. It stimulates your bone marrow and out kicks the white blood cells that would get transplanted into the recipient. I don’t know why it hurts so much or for so long but it didn’t matter. My objective as a bone marrow/stem cell donor was to save a life and any amount of pain I was temporarily experiencing was minor compared to what ‘she’ was going through as a leukemia patient. In fact, the nurses told me that what I was feeling was akin to what she was feeling for months or years. The body is being ‘attacked’ or so it felt. It was like knives popping out of my bones – sometimes it was like firecrackers going off. The pain moved about and I never knew where or when it would show its face. The day of my second injection I was at a Bat Mitzvah reception and tried to dance. No go! My femur yelled at me, then gave way, and I beat a quick path to my chair. Day 2. OK. This is how it goes? I can handle it.
Day three brought on more Neupogen. The foundation, bethematch.org, sent a visiting nurse to my ‘sisters’ house in Massachusetts to give me my third injection. You see, it has to be on a twenty-four schedule so your body never has time to get rid of it and also so it builds up and keeps stimulating the bone marrow. This is crucial – they were going to need a lot from me.
All told it was five days (including my donation day) of that drug. Each day the pain was ever-increasing as my body prepared (not that it knew what we were up to and were about to steal from it) for the donation. It was so weird this feeling. It was, on many levels, fascinating to me. I’ve always been a healthy person. I'm active/athletic and save for my love of goldfish (or any cheesy salty snack) I eat healthy and organic food as much as possible. I’ve also got some good genetics on my side so feeling like I did was an odd study on my physiologic state. All this being said I would, without a thought, do it again.
Many have asked why do it the first time? Well, first of all, it’s the right thing to do. If you can, why not? As my Dad says it’s the same innate nature in me that makes me stop at an accident (like my previous post describes) when others would keep going. Also, I’ve been an organ donor since I was sixteen. I still carry in my wallet my mother’s permission slip that she had to sign that showed her approval of my choice as a minor. Bone marrow donation is, in many ways, a natural extension of the choice I had made when I was a teenager. The other, bigger reason as it were, is that my grandfather died of leukemia. My Mother was not a match, nor was my uncle (something I know my mother felt remorse over). Back then, the test for a match was invasive. This was at Sloan Kettering, so if anyone would have had a better way it would have been them. My grandfather’s doctor (coincidentally an aunt of my then relationship) advised that my sister and me would likely not be matches so my mother wouldn’t allow us to get tested. She didn’t want us experiencing unnecessary pain for what would most likely be a waste of time. She also didn’t want us to feel like failures. It’s easy to take it personally when it’s a family member (and substitute father) you’re wanting to save.
Three years ago me and one of my favourite people were walking through the Arsenal Mall in Brookline, Massachusetts and there it was – a kiosk set up to sign people up to be bone marrow donors. It was so easy. The Caitlin Raymond Foundation was trying to find a match for a Yale hockey player of Slavic decent. We’d often talked about being bone marrow donors but the caveat being for a fellow Slav made it even more appealing for me. Unfortunately, neither of us were a match, and they never found one, so she died about a year later. But, thankfully, once you sign up you’re in the database and so there’s always a chance you could get the call.
I did. This past July. Since I apply to jobs all over the country when I saw a call coming in from Massachusetts I thought it was about work. But I was at work so I let it go to voicemail. When I checked I was very happy to hear that I was a potential match for someone. When I called back he told me what was going on and asked if I still willing to be a donor. Of course it was a no brainer YES for me. But, it seems many people sign up and have the best of intentions (and probably feel good about themselves for doing it) but when the call comes they back out (many people also back out weeks/days before the donation so the best time to do it if you’re not up for it is when that first call comes in – that way no one gets their hopes up, wastes time, or money). I understand because the more I learned about the days ahead of me the more I realized it wasn’t as easy as 1-2-3. There’s a process and there are steps to be taken.
In a nutshell here it is: the first is a blood test. I drove to the nearest place where the foundation had a contract and gave about 5 vials of my blood. These got tested to determine how close a match I was and to also to test if I was disease-free. About six weeks later (there’s no typical timeframe – it all happens based on the recipients health and what their doctors course of action is), having passed that test I was notified that they wanted my stuff and there was a timeframe in which it all had to happen. Suddenly the clock began to tick and everything sped up. Next followed an in-depth (and sometimes uncomfortable) physical to determine if I was healthy enough (as a horse, thank you very much) to be a donor. Meaning my body needed to be able to withstand the drug and the actual donation. Then more blood withdrawal. All total there were no fewer than fifteen vials taken from me. I’m sure there would have been more but I insisted I was NOT pregnant (nor could have been) and put my foot down. All total it was about three months of testing and hoping for the best (because you never know).
About a week before my donation/extraction day the recipient went into isolation. They zapped her and killed all of her stem cells or anything else that had been the cause of her leukemia. Whilst I’d been given the option of saying ‘no’ at any time (not that I would have) starting that Monday there was no turning back. If I backed out, or got hurt, or died, she would have died. I won’t lie. I felt it. I felt the weight of having her life in my hands, of knowing that at least for ten days we were undeniably linked. Me and a stranger with whom I may have nothing in common were about to have A LOT in common. Admittedly I felt strange knowing that if I made one wrong step, or got sick, or hurt it all would have been over for her. It was a huge responsibility. Meanwhile I was relishing it. I don’t have kids and am not tied to anyone or anything but for ten days I was. It felt good to be needed and feel that I mattered. So in many ways it was a great! It stretched me. It wasn’t babysitting, it was real life and it was cool! Despite the mixed bag of emotions - I wouldn’t have had it any other way!
So, four days of drugs and there I was sitting in a chair (more than like a dentists chair) in Providence, Rhode Island getting my last dose and getting hooked up to a huge ass needle and having my arm tied down. That line would pull my blood out of one arm, where it would be circulated through a machine that would pull out my stem cells and white blood cells, of which I had plenty at this point, and then another went into my dominant hand (so I could use it to eat, play on the computer and, yes, text gross pictures to the ones I loved) where most of my blood would return. Six hours later after being tied down and unable to get up I was done and making my way towards the bathroom, the coffee machine and cookies in the lounge. Mission complete! Life saved? On its way….my part was done and there was no turning back!
All told it was about ten days from first shot to feeling normal again. After I got home my ass barely left the couch for three days. It takes a lot out of your body to be making more stuff than usual and to have your blood pulled out of you and returned. I wasn’t expecting to feel so tired for so long or feel the pain that I did. But every moment was worth it and I would do it again. Everything I did was towards a great purpose and was intended to (hopefully) save a life.
The odd thing is I think we all go about our days wondering if we make a difference in anyone’s life. That’s why movies like “It’s A Wonderful Life” and “Wings Of Desire” (one of my all time favourite films) or “Scrooge” are so relevant to our human experience. It’s so easy to think we don’t matter. It’s so easy to believe that no one gives a shit (especially when you may not have that daily reassurance of being in a relationship) and to keep the time to our own beat whether loudly or quietly on the sidelines.
Maybe I’m too much of an existentialist but I often wonder if my presence matters. Would anyone miss me if I left my Tony little town in New England? I love it here but I’m not close to anyone other than my family down the road. Maybe I wasn’t built to put down roots, maybe all that moving around as a small kid (and subsequently nine states that I’ve called home in my lifetime) have made me want to keep one foot out the door.
When I went back to LA in April for work I was astonished at how few ‘friends’ made time to see me. I had reached out on facebook but in two weeks I was there I only saw my friends that I was staying with (which was a blast). So clearly my presence was not missed. Because, as a wise and favourite soul taught me, when someone says ‘I’m too busy’ what they really mean is ‘you aren’t important enough to me to make time for.’ It’s an easy out and one that is too often used. If we want something we get it or we do it – if we want to see someone we make time. It’s that simple. We do what we want. So you can see how it might be easy to think we don’t matter.
But then I walk around and see the world and I see me in it. While I was in Andover there was a bartender who, when I asked for chocolate milk (something not on the menu) and I explained why (I needed the calcium for my overactive bones) he left his post, went to the kitchen and made it for me. Then the next morning at breakfast, when I asked again he replied ‘I almost brought it out for you but I didn’t want to force it on you.’ Later (after I had finished the glass he brought me), I went out to the lobby and there was a half-gallon of milk and chocolate sauce sitting on ice next to the coffee station. It’s such a little thing, but in those hours of feeling my bones bursting at the seams, taking a step and feeling a leg give out under me, or being mid-sentence in a conversation and feeling my sternum burst, his support and encouragement and chocolate milk made a HUGE difference in how I felt. His hugs made an impact too. Again, a little thing, but he touched my life and made a difference. He and I are in touch (he emailed me a few days later to see how things went and to ask how I was feeling) but I haven’t told him how he affected my life in a positive way. Maybe I will.
These moments happen every day if we pay attention. But for some reason it’s hard, at least for me, to put the shoe on the other foot. It’s hard for me to see that the smile I leave behind could make someone feel better. Or the hug I gave a friend who unknowingly needed it was the hug they wanted from ANYONE all day. Because lets face it, in the world of ‘social’ (or rather anti-social, sit on your couch and post from miles away and make people believe you’re having an awesome life, or bitch about work when others don't have any etc.) media means that we are making less and less human, skin-to-skin contact as technology advances. Smiles and hugs are needed. Human contact is a part of staying alive and emotionally ‘together’. So it makes sense that these smaller moments of face-to-face interaction become bigger and more important. In many ways, we need them more now than ever as we become disconnected from our surroundings and the people in them and more connected to the device in our hands.
I grew up wanting to be a doctor. That changed when I failed high school chemistry (even though I aced anatomy and physiology I didn’t, at the time, think it was enough). I always wanted to make a difference. When I started writing songs in college I did so because it was a natural progression from writing poetry (which I’d started around age eight) and playing guitar (I was twelve when I taught myself). I hoped and still hope that any song I write might make someone think, smile, or feel. I even hope they will identify and feel like someone ‘gets’ it. But it’s so intangible. Art is subjective. Some people love my music, others don’t and that’s ok. Some people have cried when I’ve sung for them. But again – it’s fleeting and unpredictable. I have a friend who never listens to lyrics so it has become my life’s mission to change her mind. She likes my music, or so she says, and since my music is more about the lyrics than the melody, I just might be making headway – I might be making a difference in how she hears music going forward. Might.
All this adds up to one thing. No matter what I do in my life from here on in, no matter how many TV shows I write, or blogs, or songs, I did something that I can concretely say made a difference. As one of my favourite people (and co-conspirator in signing up to be a bone marrow donor) said ‘its not just about the recipient, it’s about her family and friends.’ This one action affects so many people. No matter what, no matter if she survives (though the odds are good) I bought her more time. She will spend 100 days in isolation in a hospital room as my stem cells become hers. After that, she will go home and hopefully begin putting her life back to normal. No one, not even me in my darkest moments of self-doubt, can take away from the fact that one small gesture made a big difference in the lives of one person and her people. This may be the only thing in my life where there will be ‘proof’ but that’s ok – it feels awesome and I would do it again. Not because I need the ego stroke, but because it’s the right thing to do. If you can, then do it!
While I’ve met several people who are signed up, I've yet to meet another donor because being a match is so rare. That being said, donors are in short supply which means so are matches – I urge you to go to www.bethematch.org so you too can make a difference and possibly save a life….
Thanks for tuning in…until next time…CHEERS!