When The Ending Isn’t Happy

I thought the story was over, at least for me. During my last phone call from Erika, the one when she told me Cousin Bob was clinically stable (whatever the heck that actually meant), I had the impression that I wouldn’t be hearing from her again, unless my stem cells were requested, or unless Bob wanted to contact me. I hadn’t heard anything from her, and I assumed that my part was finished, and perhaps Bob was focusing on his recovery and didn’t want to meet me. I was not offended or anything like that, but I did feel wistful. As if I came close to something, but never quite reached it.

But I felt unsettled. Every time I thought of Bob, I felt somehow as if he was not ok. I couldn’t picture him healthy and well. Something didn’t seem right and I didn’t know why. I thought maybe it was because I didn’t meet him or exchange letters. I thought maybe if I had written to him during the process, maybe I would feel closure. I never did write because I was concerned I’d be intruding and I didn’t want him to feel pressure to respond to me. I wish I could express more clearly how I felt after my last contact with Erika, but uneasy is probably the closest I can come.

And now I know why. Erika called me last night. I was taken aback to see her number pop up on my phone…and I knew it wasn’t good news. I don’t know why I didn’t think it was a request for contact. I only know my heart started racing and my throat became tight. I grabbed the phone and croaked out a hello. From her voice, I knew. From her soft hello, and her quiet words. I knew. When she said Bob passed away, I was already sobbing. There is no happy ending. There is no miracle.

The Gift of Life is an incredible organization that doesn’t leave donors like me floating with no resources. Erika offered to connect me with a donor who has been in my shoes. She offered me support and a compassionate ear. All I could do was cry and say no. No thank you, I’ll be fine. But I’m not. Because he is not. And I am grieving for a man I’ve never met who I remain connected to in some way.

Mine is the possible ending you are warned about, but don’t really believe will happen. The stories that are shared are not like mine. No one talks about that time they tried to save a life and failed. No one shows photos of the recipient who didn’t make it. When I was told his diagnosis, everyone said that he had the more treatable type of leukemia. CML is chronic, meaning it is slow growing. AML is acute, and I was told, more likely to be fatal. Now I am painfully aware that it isn’t always the case.

I took for granted that he would be well and healthy. I expected that even if we never met or had contact, he would be walking around in full health, with my cells bopping around in his body keeping him strong and well. I feel as though we were both somehow cheated. I keep thinking maybe I didn’t do my part, somehow.

I know what people will say. I did what I could. I donated. I was a match. I gave him a chance and hope. Yes, I know. But it is not enough. It was not enough. He is gone and his family did not have the lifetime with him they were supposed to have. I wanted his happy ending nearly as much as they did. I am so sorry, Cousin Bob. I am so sorry and I am so sad. I grieve for you as though you were here beside me. I will hold you close, always.

There is no happy ending.
 

Part 12: And so it ends.

Erika called me a short while ago.   My heart started pounding when I saw Gift of Life pop up on my phone.  I was prepared for the worst, but I wasn’t, not really.  That’s not a thing, I don’t think.  Even if you think it is, it isn’t.  You can’t prepare for the worst, because you don’t know how bad it will be until it is.

I know this for a lot of reasons.  I know because when I lost my grandfather (not lost,exactly.  I know exactly where he is.  But he is no longer here so we say “lost.”  I could say he died, but I hate that.) we all knew he wasn’t getting better.  Grandpa had had several heart attacks and a stroke.  He could no longer eat, speak or perform ADLs.  At 95 years of age, it wasn’t a question of if, it was only when.  I acted like I was prepared.  Had you asked me, I would have told you I was most certainly ready for the inevitable.  And yet…that morning when I got the call that he was gone (gone is the same as lost) I collapsed in a puddle on the floor.  I cried, I yelled, I moaned, I shook. This is how I was prepared for the worst.  Well done, eh?

Erika asked how I was and we exchanged pleasantries.  She told me that she heard back from the transplant center.  There was a long pause, during which I could actually hear my heart beating as if my head were pressed against my own chest.  Then she said, “There isn’t much information.  Apparently, he had a relapse. But he has been released from the hospital.  He is considered ‘clinically stable.'”  Huh?  What?  I asked what that all meant.  Erika really couldn’t tell me much.  She explained that they could still ask for another donation, and I quickly interjected that I am available whenever he needs, but they haven’t asked and she doesn’t know if they still have left cells over from my original donation.  I asked what the term “clinically stable” means, and she also wasn’t sure.  I think that whatever I thought I expected, this wasn’t it.  This vague “he’s ok-ish” update was not at all satisfying.  This last update.  This one last time I that I would hear about Cousin Bob’s progress from Gift of Life.  I felt unsettled and disappointed.  Whatever I thought the last update would be, this was not it.  I think I wanted a grand declaration of cured-ness.  A full and complete healing.  Something bigger…something with a joyful ending. This felt precarious.  Clinically stable sounds like he is scraping by…until he isn’t. In the emails and mailings I receive (frequently) from Gift of Life about galas and races and donors and recipients meeting, there never seems to be any mention of those who are clinically stable and have had relapses.  Those emails are of smiling, joyful reunions of people now bound together for life.  I felt somehow like I didn’t quite do my part well enough.  Why isn’t Cousin Bob cured too?  Why?

As if she knew I felt unsettled, Erika said, “If the recipient is willing, we can now do the exchange of information…are you interested in sharing your contact information?”  I said, “Yes! Of course! I mean, if he wants…I don’t want to bother him or pressure him…but yes…”  “Do you want me to contact you if your information is requested?” “Yes!” I said, “Please.”

And that was it.  The end, essentially, of my story.  Cousin Bob’s story continues, but my part in it is finished.  Unless, it isn’t.

 

 

Part 11: Happy Anniversary to Us

I woke up with Cousin Bob on my mind.  That should be no surprise to me because yesterday was the anniversary of the day I completed the stem cell donation process.  Today is the anniversary of the day he would have received the transplant.  The only reason it was a little odd is because I don’t remember consciously noting the date as it crept up on me.  The brain knows and the heart knows.  Sometimes it just takes a while for the rest of me to catch up.

I can’t think of Cousin Bob and what today means without thinking of my last update.  That was the update that shocked me into the realization that just because he received my stem cells, that doesn’t mean he is well, or will ever be well…or (as much as my mind avoids going there) that he is even alive.

While I do think of him nearly daily, I am ashamed to admit that there are some days that go by with only a passing thought.  I feel as though I should be thinking of him constantly and sending him my strength and well being vibes as well as my immune system.  In the beginning, I thought I would.  I assumed that Cousin Bob would never be far from my thoughts.  But life started wiggling in to the crevices and spaces in my  mind that I thought only had room for Cousin Bob and his recovery.  My work status (or non-work status), kids’ activities, school, my grandmother, my own health, the endless cycle of laundry, the dogs, the meals to be shopped for and prepared…all of these mundane tasks and events began to crowd out the place I was holding space for Bob.  Sometimes I feel as though I have failed in my self-imposed responsibility to keep Bob in my thoughts constantly.  As if by thinking of him, I could somehow influence the outcome of his recovery…I imagined my mind reaching out to him and pulling him through his illness as though it were a muddy swamp.  I did not only mean to donate cells, I meant to rescue him.

What will it mean if I did not rescue him?  What will it mean to me if despite my cells, Cousin Bob did not recover?  How will I feel then?  I know how I will feel.  I almost don’t want to know how he is for certain, because I can already see the darkness that will envelop me if I failed.  Don’t tell me it wouldn’t be a failure. I know that is not how I am supposed to look at it.  I read all of the questions and answers and when my profile was done, I gave the answers I knew I was supposed to give (I’m not stupid, after all).  I knew what I had to say to be accepted.  I was supposed to remain unattached to the outcome…a yogic concept that I have struggled with since the day it was introduced to me.  Non attachment gives peace.  I am attached.  I am not even sure that I have it in my genetic makeup to be unattached.  I have been attached since the day I was called with the news that I was a match for Cousin Bob.  If I have failed him, if my cells were not able to create the new immune system to give him a healthy life, I will feel betrayed by my cells.  I will be angry that they did not do their job.  I will be heartbroken for Cousin Bob and his family.

I made pancakes for my kids today…smiley face with mini chocolate chips.  I did it because my littlest one asked, and because I could.  I made a separate batch of dairy free pancakes for my lactose intolerant daughter.  I made both batches with joy and love and gratitude that I was able to do this small thing that made my girls smile.  As I cooked, I wondered if Cousin Bob is awake, or eating, or if he likes pancakes.  I wondered if the allergies I felt this morning were plaguing him as well.  I know that my allergies would be his, but I wondered about things like preference and taste. Does he like chocolate (all the best people do, I think).  Did he not like it before, but likes it now?  Did he wake up this morning remembering what day it is?  Is he thinking of it as his re-birth day the way many transplant receivers do?  Is it a celebration? Or is he just going about his business, trying not to remember what he went through?  Does he think I’m a jerk for not writing?  Is there sadness or is there joy?  Is there silence?

The most I can hope for is that he is recovering.  I may never know the answers to any of my questions.  I may not get answers that I like.  While I wait for Gift of Life to be in touch with me with an update, I think about the idea of non attachment and I wonder if I will ever be able to unattach myself to this particular outcome.  I don’t think I will, and yogic or not, I can live with that.

 

 

 

Part 9: Wow, the wait. It’s really just waiting.

Waiting implies sitting around doing nothing but you know…waiting.  In reality, since the day of the donation, January 16, I have been doing things.  All kind of things.  Some of those things were important things, like being with my grandmother while she was sick and in the hospital.  Some of those things were completely forgettable and unimportant, like the moments between waking up and wandering around in the morning *not* going to a yoga class, or food shopping, or chasing the dogs off my bed.

There were moments of planning for my sweet girl’s bat mitzvah, which was really lovely, thank you for asking.  There was the bat mitzvah itself; a day of joy and pride and exactly the day we wanted it to be.  She felt like a princess.  On that day, that is all that mattered.

In between all of these important moments that I can remember are the many moments that I waited, consciously or unconsciously for news of Cousin Bob.  I cannot say I waited patiently.  I cannot say I let it go.  From the day I donated, I had the awareness that the next day, January 17th, was his Day 0.  I began counting along with him.  I know that today is Day 59 for him.  I know.

That is why, a few days before the bat mitzvah, when I received a call from Erika at Gift of Life I nearly jumped out of my skin.  In between all of the regular moments of my life, I was always waiting.  Erika however, was only calling to introduce herself, and to find out if I was interested in receiving updates on my recipient’s condition.  If so, was I interested in only positive updates or possibly negative as well?  I have to say, I thought we had pretty well covered all of that earlier.  I tried to make it as clear as possible that I positively, definitely, absolutely would like any and all available updates on my recipient (the one affectionately known as Cousin Bob) as soon as allowable.  Erika told me she would put in the request that day, which was one month since my donation (February 16).

A couple of weeks went by and I didn’t hear anything.  The bat mitzvah came and went.  Grandma became well, left the hospital and rehab and went back to her lovely assisted living center.  (She says differently about the loveliness of the assisted living center, but let’s argue that point another time.)  All was mostly quiet.  My routine gave me more time to think about my recipient and how he was doing.  I knew I could write to him, leaving personal identifying details out (Dear Cousin Bob, I am nameless and faceless…hmm…too creepy?), and that Erika would forward it to him.  I decided against it, knowing that it might be overwhelming for him if he were still in the hospital. I decided to wait and see what the update contained.  Because you know, I’m so patient.

I waited another week, and then I called Erika and left a message.  I tried to make it a casual message.  It *may* not have sounded casual.  You’d have to ask her.

A few days later I left another message.  This one might have sounded a drop desperate.  Again, I’m not sure.

This morning, Erika called me.  Gift of Life popped up on my phone and I felt that quickened heart beat as I answered…please please please…..but of course I answered with the casual “Hello?” And awesome Erika came through with the most amazing news.   The graft took!!!  Cousin Bob’s body accepted my cells and he is doing well.  Not only that, but he has been discharged from the hospital.  My heart and body jumped up and down and I started to tear up with relief and joy.  I cannot imagine better news.  I am so so so so happy.

Now, with joy in my heart, I can sit down to write to Cousin Bob and I can tell him I know what day it is.

Blessings on Day 59. Blessings blessings blessings.

Part 8: Is that it? Really?

After going to sleep early, Rosie and I were up by 6:30. We dressed quickly and for comfort, knowing the day would be long. By 6:50am, we were downstairs in the lobby waiting for our car to ANOVA. Rosie was too tired, and I was too nervous to eat.  My day of donation contact, John, had told me to expect the car by 7. Being the yekke that I am (if I’m not 10 minutes early, I’m late), I was standing by the door pacing.

John called at 7:05 to see if I was in the car and I told him no. He sounded mildly concerned and said he’d call the company. At 7:15 he called again. Nope. Still no driver. I was in full on panic mode, imagining that this somehow would negatively impact Cousin Bob. Finally, at 7:40, the driver arrived and sped us to ANOVA. I forgot to be annoyed or stressed as he entertained us with stories of his life as a pilot for the defunct Eastern Airlines and his escapades flying helicopters for various missions in Africa.

I got to the site at 8, received my last Neupogen injection and was hooked up to the apheresis machine by 8:15. There were two nurses whose names have disappeared from my brain, who were dedicated to me for the entire day.  I was set up in a hospital bed, with a bunch of heated blankets. In my left arm was a needle that drew the blood out of my arm and up through a tube to the apheresis machine. I had to keep my left arm still, which was really the only uncomfortable part of the whole day. In my right arm was another needle, to return the blood to my body (minus the stem cells which were separated out by the machine). John was so apologetic at the rush and and so kind that I felt bad for him. He went out and got me coffee and hard boiled eggs since I had not had any breakfast. The nurses set up a video for Rosie and me and we were going to watch a movie to pass the time, but I ended up talking to John about his job and his travels and his new wife. He was adorable and entertaining. He also brought me a copy of my physical reports and an expense report to fill out to be reimbursed by Gift of Life (which I still haven’t completed…oops). After taking to him for a while, I pretty much decided that I was going to move to Florida and get a job with Gift of Life because it sounded so great.

About 45 min into the donation, I felt a tingling in my lips and teeth. I ignored it. The tingling got stronger and spread up my face.  I continued to ignore it until it became so distracting that I wasn’t able to carry on a conversation.  I mentioned it to one of my nurses, who asked me how long it had been going on, and told me that it was a sign of not having enough calcium.  I had taken the Tums as instructed, to give me extra calcium for donation day, but apparently it was not enough and I needed more.  She gave me more Tums, and several gigantic calcium pills. It got better, but wasn’t gone, so I took more.

About 30 min after the tingling stopped, I started sneezing and I couldn’t stop.  If it had been anyone else sneezing like that, I would have been watching and laughing, but since I was hooked up to tubes and not able to move my left arm, it was less amusing and more annoying.  The sneezing continued and my tongue started to itch. My nurse came over again and asked about my symptoms (tongue itching like crazy, spreading down my throat) and I could not stop sneezing.  This time I was having an allergic reaction to the anticoagulant that was put into my return IV.  There was no way to know if that would happen, since I’d never had an anticoagulant before.  She gave me Benedryl into the line, and as John put it, one minute I was having a conversation and the next second, in the middle of a word, I was out.  Sound asleep.  Benedryl does that to me every time.

When I woke up, several hours had passed.  I thought I would be finished, as it was past 12pm, but it seemed my earlier calcium issue had slowed things down, plus the medical team for Cousin Bob had requested an especially large amount of cells from me.  John estimated I still had at least 2 hours left.  I suddenly became very anxious that I wasn’t going to produce enough after it was explained that they had asked for an unusually large amount (and if you know me, you know there is nothing unusually large about me except maybe my mouth), and I had a moment of panic that after all of this, Cousin Bob wouldn’t receive enough cells.  The nurses and John calmed me down, saying that it was all going fine, and I would have enough to give.

To distract me, John presented me with a blanket made of sweatshirt material, signed by all of the staff at the Gift of Life office in Boca, who helped make my donation a reality.  Gail was on there, and Ana, and Lindsey and John, along with many other signatures and lovely messages from people I hadn’t spoken to directly, but who somehow had been involved in matching me with Cousin Bob and getting me to Virginia that day.  Maybe I was tired from the early start to the day, or maybe it was that darned anticoagulant again, but I choked up and got teary.  It was so thoughtful and wonderful and is one of my most favorite possessions.

At a little after 2pm, my nurses told me I was finished.  We sent Rosie to the waiting room because she is a bit squeamish.  Between the two of them, I was unhooked in about 45 seconds.  And that was it.  Suddenly I was off the machine, my arms had hot pink gauze tape, I was woozily standing and going to the bathroom, and that was it.   My journey was complete.  I had done what I came to do.  I saw my cells.  I held the bag.  It looked like a bag of tomato soup.  I spoke to the cells and said, “Listen.  You have to do what we came here to do.  You have to get to work, and become a nice strong immune system and heal Cousin Bob.  Ok?  If you don’t, I will be very disappointed.”

In the haze of my dozing and then being unhooked, I heard one of the nurses mention that the courier was here.  I already knew from John that a courier was arriving to pick up the cells and fly directly to the recipient’s hospital with them.  I also knew that Cousin Bob was going to receive them on January 17, the very next day.  Cousin Bob’s day 0, in transplant terms.  After making sure I could walk and that I was not dizzy or having any further issues with the anticoagulant, my two amazing nurses bid me goodbye, and wished me luck.  I had my coat, my bag of entertainment (which stayed unopened the entire day), and my blanket.   John walked me out through the waiting room,  where I spotted a petite Asian woman.  I knew she was the courier.  I looked at her, and I said, “Are you the courier?”  She nodded, looking confused.  I said, “Please.  Be careful.”  And she said, “Yes.  I will.”

I walked out with Rosie on one side, and John on the other.  My part was done.

Please work please work please work please work please work please work please work please…

Part 7: No pressure or anything, but don’t screw this up now.

The Neupogen arrived as scheduled, and was refrigerated in my office.  With the exception of my scheduled pregnancy tests, I wasn’t going really anywhere besides work (either the office or teaching yoga) and home.  When I went to the supermarket, I dodged people who sniffed or coughed as if they might have the plague.  I briefly considered wearing a mask any time I had to leave the house.

The Sunday before my first injection, I had to pay a shiva call to my uncle (through marriage).  His mother (a super lovely woman) had passed away and I missed the funeral so I was determined to go.  Rosie came with me.  In retrospect, perhaps spending several hours in a room full of people who could have each been carrying the plague wasn’t the greatest idea I’d ever had, but I didn’t catch anything, and I did get to see my family.  My grandmother lives in the same assisted living facility (although I like to say she is just visiting, because she isn’t such a fan) where the shiva was.  Grandma is 92.  She loves this whole donation of my stem cells story.  Grandma loves when anyone writes anything down that happened to them.  She is our family’s record keeper and if our roles were reversed she would definitely have been wearing a mask, because she doesn’t give two beans what anyone thinks.  And, old people bore her.  My most recent favorite Grandma story: The day we moved her into the residence, there was to be a concert in the common room.  The common room is a gorgeous room that looks like Florida.  Grandma sometimes pretends she is an old lady when she doesn’t want to move, but when it was time for the concert, she ran over several old people and at least two workers to get the coveted club chair.  Then the concert started, leading off with a rousing rendition of “Jingle Bells.” If you had seen the look of horror on my grandmother’s face, you would definitely have fallen out of your seat laughing.  It wasn’t even just horror.  It was offense.  Someone promised her a concert, dammit.  Grandma sat stoically, waiting for the Beethoven, or perhaps Bach which never came.

When we got home, Rosie came down with a fever.  Rut roh.  I got close enough to take her temperature and then backed away slowly, as if the fever would not attack if I did not show fear.  I tried not to panic.  I absolutely could not get sick now.  I was starting the Neupogen the next morning and I didn’t know were Cousin Bob was in the process but surely he was deep into it.  I stayed far away from Rosie and began the ritual that would last until the donation, a cup of Emergen-C in the morning and a cup at night, and washing my hands in a nearly OCD manner every half hour or so.  I was not screwing this up now.

Monday morning, January 12, I arrived at the local Urgent Care center for my first injection.  I had an appointment (thanks, Ana) and my 2 vials in my pocket wrapped in bubble wrap.  I wasn’t taking any chances.  Some initial bloodwork was drawn (another pregnancy test, perhaps?) and then the injection.  In. My. Belly.  Yes.  I got a shot in my belly.  My poor belly.  I am not going to lie.  That hurt.  I probably felt that the whole day.  And it is possible I complained about it for about a week.  Hello?  It was in my belly!!!!  I spoke to Ana to let her know we were done and on track and at the same time I gave her the heads up that I thought Rosie had the flu.  I heard definite panic in Ana’s voice.  I just could not be a donor screw up.

After the injection I ran back home, picked up the sick girl, and ran her to the pediatrician.  I am not proud of this, but I did drive with the windows open, and my body leaning away from her as far as possible.  Stop whining, I said.  It is nearly 25 degrees outside!  At the pediatrician I learned that she did in fact have the flu.  Gah.  My bad.  No one got the flu vaccine this year.  Not on purpose…it just slipped through the cracks of my 4 kids, a zillion activities, trying to get it all done life.   I called Ana again, while scheduling an appointment to bring back the other 3 for flu mist that evening, to break the news of the definite flu.  I promised I’d be careful and true to my word, as soon as we got home, my poor sick Rosie was banished to her room.  Every so often I’d toss in water bottles and food.  But mostly, she languished.  With FOOD!  And WiFi!

The next morning, injection 2.  This time, a super lovely nurse named Yvette came to my office.  She was so sweet. Yvette gave me the injection in the back of my arm, like a normal person.  And, in case you were thinking I am a big wussy baby (I am, but not because of this), it didn’t hurt at all.  It’s just, the belly…I mean, come on!  Yvette left after telling me to take Tylenol around the clock (I had been, as instructed by Ana…Ana Ana Ana!) and drink plenty of water.  My injection was at about 10:30.  By 2:30, I couldn’t hold my head up.  I was exhausted, and my head hurt.  My body was starting to feel achy and I was convinced I had the flu.  I panicked.  Ana called me and I told her how I was feeling.  She reassured me that it was the Neupogen.  I was nervous, but took an extra Emergen-C and went home to nap.

Injections 3 and 4 went pretty much the same way, except that day by day the aches started earlier and lasted longer.  I was able to work at the office, but not teach yoga.  The discomfort was limited to my torso, hips, sacrum, upper ribcage and sternum.  Occasionally I felt pain in the back of my neck, and I had an on and off headache.  One night I had a fever.  I definitely had to move more slowly.  There were a few occasions where I would hop up and suddenly double over in joint discomfort.  I can’t really describe exactly how it felt, except that it doesn’t feel like anything I’ve ever felt before.  It wasn’t exactly in my joints…it was perhaps in my bones.  It wasn’t a sharp pain, it was more of a dull ache.  It did not disrupt my sleep, unless I woke up for some reason on my own, and it made it harder to fall back asleep.  Some people can take ibuprofen for the discomfort and find relief.  Because of my migraines, I can’t take ibuprofen.  It causes severe rebound migraines for me.  I was only able to take Tylenol which is less effective overall.

After my 4th injection, Yvette wished me well.  Rosie’s fever had broken (thanks Tamiflu) and she was going to travel with me to the donation in Virginia that afternoon.  I was willing and felt fine about traveling alone, but my children were vehemently against it.  The husband was out of town and not an option.  Originally my oldest was going to go with me, but then he was invited skiing with his uncle and I knew he really wanted to go.  When Rosie got sick, I had pretty much decided I’d go alone (oh no…how awful…3 nights in a hotel…All. By. Myself.).  The kids had different opinions (“You go with mom.”  “No YOU go.”  “I don’t want to take her, YOU take her.”  “Ugh, she threw food at me for 4 days, YOU take her…”  Ok, that didn’t *exactly* happen, but in the not too distant future….).  None of them seemed to think that I was capable of taking a train all the way to Virginia alone.  I’m not sure exactly when I became a moron, but there you go.  As my son put it,  “I know you, if you go alone, you will leave here and not speak a single word to anyone until you have to when you check into the hotel.  And maybe not then.  You will be in a hotel for days and will not speak. You will forget the sound of your own voice.”  That would be bad because….?

I ended up agreeing to take Rosie, because she no longer had a fever, and she was a willing companion.  We’ve traveled together before and as far as traveling partners go, she’s pretty easy.

Now, injected, packed, and ready to go, Rosie and I caught a train to Penn Station, to connect with our Amtrack train to Virginia, to give away what I could spare with love and hopefully healing.

 

 

 

Part 6: How many pregnancy tests are we talking about here?

Towards the end of my trip to Florida, I got an email from Ana letting me know I was scheduled for a pregnancy test on Monday, January 5th. My second urinalysis had come back fine and I was officially medically cleared to donate. As much as I expected it, my first reaction was increased heart rate and “omgomgomg.” My second reaction was, “Pregnancy test? Really? You know I’m almost 45 and have 4 children the youngest of whom is 9, right?”

Ana was patient and lovely with me, explaining that pregnant women can’t take Neupogen and can’t donate. I knew all of this and had no intention of becoming pregnant (ever again!) but still. If you know me, you know that for me to even have the thought of a pregnancy in my brain is almost more than I can handle. Not very Zengirl, I know, but there it is.

I spent the rest of my time in FL thinking about my super duper state of health, and felt grateful. Grateful and almost not worthy of the blessing of such beautiful health since I knew how badly I had neglected myself lately. It is a strange and frustrating paradox known to yoga teachers as the Teach More Practice Less phenomenon. As I have picked up more students to teach, my own yoga practice has suffered greatly. As my yoga practice suffers so does all of my other self care, like eating well, sleeping well, being gentle and nurturing towards that body I live in. You know, all of the things that a yoga therapist such as myself would “prescribe” to clients for long term well being. Yeah, not doing any of that. Knowing that I am healthy enough to help another gave me great joy, but knowing also that I wasn’t doing my part made me feel guilty and apologetic towards my body.

We arrived home at 9:30 am Monday morning and after picking up a school uniform from the house, I drove my darling dancer to school and then took myself to my pregnancy test. As usual the wonderful lab people knew I was coming thanks to Ana. I was in and out in a flash, still internally rolling my eyes about the whole idea of me being pregnant.

A few hours later I got another email from Ana confirming my next pregnancy test for Thursday, January 8 which was yes, three days later. I didn’t laugh…ok I did. After I stopped laughing I asked her how many more times I’d be tested and she said that since I was starting the Neupogen on Monday (what? Monday? Already?) I would get a call from Lindsey, Ana’s supervisor on Saturday night asking me one last time if I was pregnant. I am sure I had some snarky response at the tip of my tongue but whatever it was I let it float away unsaid as the reality of Monday and “donation week” was truly approaching.

The package containing the Neupogen, meant to stimulate my body’s production of stem cells, would arrive to my office on Thursday also. The vials needed to be refrigerated and I would bring them with me when I received my first injection. The 2nd through 4th injections would take place at my office. The 5th and final injection would take place on Friday, January 16, before the donation began.

The last thing Ana said in the phone call was that I should take extra good care of myself for the next week. While I was getting ready for the Neupogen and the donation, at this point so would be my recipient. He was beginning, or had already begun, the process of intense chemotherapy and radiation that would kill his own stem cells, effectively destroying his own immune system. If for any reason I could not or would not donate after that point, my recipient would die. He would die.

That night, I thought of Cousin Bob, wherever he was, and I cried myself to sleep.

Part 5: Musings While I Wait (oh, and vacation in Florida)

After I was home from Virginia for about a day, I got a call from Ana (I was starting to get attached…) to let me know there was a problem with my urine test. Not a big deal, just a little bacteria which could indicate an infection. I asked what it could be, and while Ana didn’t really know, she did know that I needed to retake the test at that same local lab. Ok, fine (ha). Ana set up the appointment for the following day, and explained to me that while my donation was crucial for the recipient, at that point, Gift of Life’s main concern was donor safety. My safety. While the initial blood test was to ensure compatibility of tissue type between me and my recipient, the physical was all about me and whether donation was safe for me. Well now. How about that? Whether or not it was safe for me to donate had never occurred to me. My thought process was more along the lines of: I have stem cells -> He needs stem cells -> I give him stem cells. It’s probably a good thing that Gift of Life was doing the higher level thinking.

Rosie (my oldest daughter and a fantastic source of blog material in her own right) and I left for Florida so she could dance in the All American Halftime Show in the Citrus Bowl on New Years Day (I *told* you). This was her trip and her time to shine. I dove into it, making the week all about her and her friends and the incredible way the choreography of 420 girls from around the country came together in a short time. It was a perfect week and it had nothing to do with me, or the thoughts swirling in my mind surrounding the donation, and I kept it all separate.

That’s not to say it wasn’t on my mind. I knew I wouldn’t hear from Ana that week, but that didn’t stop me from checking to see if she had emailed me. I spent a lot of time on line at Epcot and Universal thinking about Cousin Bob, wondering how he was feeling, if he had family, if he was scared. I wondered if he knew he had a match, even though I hadn’t been medically cleared yet (I found out later that the answer to that was yes. He was told he had a match when I was identified. Personally, I wasn’t sure that was so smart. What if I wasn’t medically ok to donate?). I wondered if we were biologically related in some way (I’m still going with yes). I wondered on which side of the family (I’m going with my mother’s side).

I thought a lot about that question my son had asked while I was on my way to my physical at ANOVA in Virginia. What if I was donating to a terrorist who had killed Jews? Not that I thought I was. In fact, the question of what kind of person I was donating to, the character of that person, never entered my mind. It is a person’s life, after all. I’m pretty sure that no one is requesting character references when someone is in need of a stem cell transplant, or any type of transplant. In fact, if transplants were based on how “good” a person was, I suspect there would be many fewer transplant recipients and most of them would be children who haven’t yet had a chance to do anything not considered good. My mind also wandered over the thought (listen, I am human) of what if I somehow discovered I was donating to someone I disliked. Let’s say I disliked this person a great deal. Let’s say I even hated this person. I even quickly reviewed the very short list of people I dislike in my mind to see if any of them fit the criteria of male, age 53. Nope. But what if they did? What if? What if? Would it matter? Should it matter? What if this person did something terrible to me? Would I want to be involved in saving this person’s life? Should I want to? Well, yes, I should. That is the easy answer. That is the answer that a “good” person would give, should give. Am I a good person? Well, people are saying so, especially now. But am I? Sometimes yes. Sometimes not so much. Would I knowingly give my stem cells to a person who hurt me terribly? Who I despised? In order to save their wretched life? Sigh. Dang it, I would. However, I wouldn’t want them to know it came from me. Aha. Perhaps now I understand part of why the process must be anonymous.

Now here I was, on line at Universal, having decided I would in fact donate (anonymously) my life saving stem cells to my enemy in order to save his life when my mind wandered (ah the wandering mind) again to my son’s question of the terrorist. Not exactly to saving the terrorist’s life, but more to the idea of the terrorist. The idea that while I am preparing to save a life (admittedly in the easiest way a person can save another person’s life…it’s not like I’m rushing into a burning building or taking a bullet for someone), somewhere in the world another person is preparing to end someone’s life because they are Jewish. This part was hard for me to think about and hard to decide to write about and I only did because my dear wise friend Sue also thought of it. I figured if I thought it, and she thought it, maybe someone else would connect with it also. The idea shook me, and felt very out of place on line at Harry Potter. Except, now that I had thought of it, there it was, and it wouldn’t go away. Of course, not all terrorists are solely interested in killing Jews. I am donating stem cells through an organization that was founded by a Jewish person (Jay Feinberg) who found his match in another Jewish person (it’s genetic, remember?), and the Gift of Life had a bone marrow drive at my kids’ school which is a yeshiva (again, Jewish), and my recipient is likely of a similar genetic background to me (eastern European and Jewish, even if he doesn’t know it). The whole Jewish thing is kind of out there. Plus, living where I do and being part of an Orthodox community, we really can’t ever escape the Jews-are-always-a-target way of thinking, especially these days, when I’m sorry to say, it is as true as ever.

I wish I could say I had a deep revelation about the soul of man, but all it did was make me sad. On one side there is killing and hate and on the other love and giving and healing. It was then that I realized, and as insane as I realize this will make me sound, I love my recipient and want a full and complete healing (refuah shulaimah) for him. I can’t do anything about the hate and terror in the world. I have only stem cells and love to give with an open heart. And give them I will.

Part 4: The Ultimate Physical

After a quick call back from Ana with a few questions regarding my allergies, I was deemed good to go by the powers that be (a faceless medical team that apparently really did review my answers). This was when I learned what I found to be the most fascinating fact of all. Any allergies I have, environmental or medication, or whatever, upon donation will become my recipient’s allergies. My tree and pollen sneezing and itchy eyes will become *his* tree and pollen sneezing and itchy eyes. My inability to take sulfa drugs will be *his* inability to take sulfa drugs. Whoa. If that is not a connection, I don’t know what is. After double checking with the medical team, I was cleared for the next round which would be the full physical. I *told* you I always do well on tests. Ana said she’d send me my travel information and asked what time on Sunday I’d prefer to leave and from what airport. What? Sunday? Oh, right. The physical would be Monday, December 22. It was requested that I go down the evening before so that I begin early in the morning. I said, “Sure, that’s fine.” I’ll bet somewhere on my file Ana has written “Sure, that’s fine.”

Well, now it really looked like I was doing this, pending of course the outcome of my very lengthy and thorough physical. I still hadn’t told anyone, besides the husband. It seemed like the sort of thing that I should mention, but I wasn’t sure how. Facebook post? Nah (although those who know me know that I do loooove my Facebook and many a commentary on my life and times is made that way). Just didn’t feel right. Text? No. Phone calls? Egad, no. I decided to just not mention it unless it happened to come up. Since you know, donating stem cells comes up very often in casual conversation at family events or when teaching a yoga class or whatever. Maybe not. I would not classify myself as shy, but I am introverted in the sense that I don’t engage in much small talk and social gatherings and large groups of people make me feel itchy. I figured those who needed to know would know, and those who didn’t know would be just fine.

The next few days went by and on Sunday, the day I was to fly to Virginia, my family was having our annual Chanukah party at my uncle’s house. Due to the timing of my flight, and the fact that I hadn’t thought to request the airport that would be on the way back from his house (ok listen, I don’t do this every day, cut me a break), I spend 2 hours at the party only if we arrived exactly on time. I packed the night before and harassed my family into the car so we would get there on time (if not early). Once there, I was having such an enjoyable time that suddenly, like Cinder-havetogotoVirginia it was almost time to go or I would miss my flight. I started to say my goodbyes, and my family naturally was all like “HUH? You just GOT here!!” A valid point, since I usually close the party down. I mumbled words like “stem cell,” “unexpected,” “bone marrow,” “Gift of Life,” “physical,” and “plane,” while I went from person to person hugging and kissing. The husband trailed along behind me offering slightly more detail by way of explanation but most of my beloved family still had the usual look of befuddlement and confusion they have when dealing with me. Ok, so I could have done that a bit better. Noted.

As we drove, it occurred to me and my very intelligent and not very young children that they knew something was up and I hadn’t explained much to them. I used the drive to give a basic explanation of what I would be doing (I was pretty much assuming I was doing it, if that wasn’t clear). My son’s first and only thoughts were “It is anonymous? What if you are giving your stem cells to a terrorist and saving his life? What if it is a terrorist who has killed Jews?” That became a discussion about genetics and the unlikelihood of having a close tissue type to someone not of the same cultural background as me. We barely made it to the airport, and the husband graciously slowed down, allowing me time to jump from the car with my overnight bag and make it to my flight. Gift of Life (the fabulous Ana, probably) had arranged for me to be on the travel pre-check line so I sped through security feeling like a rockstar. Flight was great, blah blah, blah. At the airport in Washington, DC I was met by a dear and wonderful friend whom I had never met in real life (What? The devil you say! No, it’s true!). Denise and I have known each other since we were both pregnant with our now 9 year old darlings, via the magic of internet mommy boards. I knew her instantly and may have attacked her with hugs. She tolerated my wild affection with kindness. It was awesome. But that is a topic for a whole other blog. Denise took me out for a snack and then back to my hotel. It was such a great night and really calmed whatever nerves I had about the physical the next day.

My oldest child (and only son) likes to say that if I don’t have people insisting I speak to them, I could go forever without hearing the sound of my own voice, and he is right. From the time I got to the hotel and checked in, to the time my other dear friend (also known from the same internet mommy group of the same time period) picked me up for breakfast, I didn’t hear my own voice. I know that would bother my darling boy greatly, but I loved it. Oh the quiet…if I could bottle it and pull it out whenever I need it…ahhhh bliss. Early in the morning, Beverly picked me up and we went for breakfast. So far, this Virginia thing really felt like a vacation. I was loving it. After lots of coffee and great conversation, she dropped me off at the Apheresis Center of North Virginia (ANOVA) for my physical. I walked in and was met by the lovely nurses and the nurse practitioner. For the next several hours, I was poked, answered questions (the same in many forms, and many times, by several people), had blood drawn, peed in a cup, had a chest X-ray, and an EKG. It could have been unpleasant. It could have been invasive. It could have felt weird or judgmental. It never did. It felt appreciated. It felt important. It felt like I was taking a journey towards doing something to help someone. Every single person I spoke to thanked me for what I was doing and treated me as though I was really doing something special. I appreciated all of the kindness, but truly I didn’t feel like I had done much of anything yet.

I caught a cab, and zipped back to the airport, saving my receipts of course, because Gift of Life did not want me to have to pay for anything out of pocket. Once home, I told Ana that all went well. I reminded her that I’d be going to Florida with my daughter the following Sunday (12/28) and she said that due to the holiday week we wouldn’t likely hear anything about my medical clearance until around then anyway.

With that done, I turned my attention back to my regular life and upcoming trip with my daughter and Chanukah.

I’m THE match, now what?

I’m the match.  I’m THE match.  Whoa.  I don’t care how many times you go to a bone marrow drive, or how often you read about bone marrow donation or whatever, when someone says to you that YOU are the match for someone who needs exactly what you have in order to LIVE, that is enough to make you sit and say, “Holy cow.”  I was sitting at my desk.  The husband was sitting to my right.  My heart started to pound a little harder and I got a lump in my throat.  I didn’t actually start to cry, but it wasn’t too far off.  A gazillion (yes, that many) questions and thoughts started popping up in my head.  Who is this person?  Grown up?  Child?  Male?  Female?  Local?  Jewish?  (interestingly, Jewish was not the first thought that popped in my head but it did pop in)  Will it hurt?  When do they need me?  What do I have to do?  How can it be me?  Are they sure? Me? Really? Me? And over and over…ME?

As if Regina could hear me, she started to tell me a few things.  First of all, this is an anonymous donation.  I do not know the recipient, or anything about him (a male as it turns out) aside from his age (53), and might never know.  I do not know where he is.  It could be anywhere in the world. The next step (there will be many steps) was to speak with the person who would become my coordinator, Ana, and Sara (whose exact role I don’t remember). I agreed to speak to them both the next morning (Wednesday) at 10am. Regina would make sure I received my donor information packet by 10am, so that I would be prepared to speak to them (both at the same time…I imagined it to be like when I call my parent’s house and my father answers and then my mother picks up the extension and shouts questions and comments into the phone and they have weird side conversations about coffee and lunch). I heard myself saying, “Ok, no problem, I’m available whenever.”

The rest of the day passed in a fog and I already knew I am going to do this…whatever this entails…because it already feels true and right and like a part of me. There is little thinking involved, only a sense that I have been called to do something and here I am, ready. I don’t feel the least bit nervous. I feel almost impatient. I also feel a bit shy about discussing it with “others.” I speak to several people throughout the day; friends, family, etc. This is always on my mind. It is so big to me but I don’t mention it to anyone. I don’t yet know what to say…the wheres, the whens, the hows…it is all still cloudy. At one point, I realize that it never occurs to me to really think about the pros and cons or whatever. It never occurs to me to discuss with anyone, including the husband, whether or not I will do this. The husband also takes it for granted that of course I will go ahead with it. We don’t know anything yet about the process, and yet I think that we are on the same wavelength from the beginning. It never seemed to be an option that I wouldn’t donate.

Much later in the process, my cousin mentioned to me that when he donated (also stem cells) through the New York Blood Center, his coordinator told him that many times when he calls people about being a potential match they hang up on them. Or say they did the cheek swab as a dare. My own coordinator on the day of my donation (John) told me that also. A dare? You did it as a DARE? You wasted TIME and RESOURCES never intending to donate life saving cells to someone on a DARE? That one was beyond my comprehension. Wow. Just wow. Really?

Regina told me that the next conversation would be important, as I would have both processes explained to me. Although this recipient’s medical team was requesting peripheral stem cell donation, traditional bone marrow donation would be discussed as well, in the unlikely event it became necessary. For the moment, I just had to wait to receive the material, and hear from Sara and Ana.  It was 5 days since the first call from Gail.