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 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.