Before you read this, please understand that my stem cell donation was very unique and not at all the experience that typical donors have. If you are ever selected to be a donor, please do not shy away from saving someone's life because of what I experienced. If I were asked to do all of this again, even for someone anonymous, I would gladly do it.
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My stem cell donation was torture, and I feel like I have not had the chance to process what I went through. I hesitate to even complain about it because Quincy has had it so much worse for so LONG. But I’m in this story too, so here goes…
My Filgrastim injections were tough. Once a day, for 5 days, I had to have a needle poke into my stomach. The medication stimulates stem cell growth so I can over-produce stem cells for the donation. The bone pain I felt was strange. Sometimes I would get a wallop of a zinger in one bone, like my sternum, or the base of my skull. Other times, I had prolonged deep aches in my hips, pelvic bone, back, spine, femur, upper neck, and skull. I had joint pain in my knees. I was exhausted and had a low appetite. I also had headaches and felt dizzy. I couldn’t bend over without feeling like my skull was about to explode. I had a hard time sleeping because I could hear my pulse inside my ears, a constant loud swishing sound. Worst of all, I could not cry without feeling extreme pressure and pain in my lower skull/upper neck. With all of the trauma I was going through, I couldn’t release my emotions. I had to bottle them all up to avoid excruciating pain. Sleep sucked, too. I mean, how does anyone sleep when their son is in the hospital, waiting for their stem cells in order to live? Now I’ve got the added physical pain from these injections, tossing and turning all night, in physical and emotional turmoil. So that was how I lived for 5 days as I received the Filgrastim injections.
Let’s talk about the medication. I was supposed to have a home care nurse visit me every day to administer the shots. I was supposed to have FedEx deliver the injections to my home for the nurse to use, but because of the Bomb Cyclone storm that hit the East Coast, my injections never arrived. So, I had to stress about the delivery that never happened and go to plan B - drive an hour (round trip) every day to Scripps LaJolla to have the infusion nurse in the oncology clinic administer my shots. Again, triggered by memories of my sister, Marcy, going to HER infusions as she battled (and lost) Ovarian Cancer. Triggers of my SON, having his infusions inpatient at Rady Children’s Hospital, where he currently still is. Fears that I might get cancer one day… fears of people thinking that I have cancer right now because I’m AT the infusion center. Wanting to shout out, “I don’t have cancer, I’m just here to get an injection”, but then feeling so terrible for all of those people in there who DO have cancer. What the FUCK. And I’m holding all of this in because it hurts to cry and because I’ve become so used to doing “hard things”.
My arms hurt right now as I type because my veins are still in pain from the donation.
Oh - the donation… here we go…
It wasn’t until the day AFTER my donation that I realized that I literally experienced torture. I’ve never been able to watch those torture movies. Psychological thrillers are fine. Silly slasher films like Nightmare on Elm Street, fine. But realistic torture films like Saw, no way in HELL could or would I ever watch those. Andrew’s cousin, Bowe Bergdahl, yes, THAT Bowe Bergdahl, was locked in a tiny cage and poked with needles every day for over a YEAR in Afghanistan… I couldn’t even listen to the rest of ‘Serial’… But I sure did think of Bowe that night when I realized that I had experienced probably an ounce of the torture he experienced.
The day started off great. My mom, who took me to all of my injections, took me to the donation. We checked in, had breakfast in the cafeteria, I got my last dose of Filgrastim (poke #1), had a blood draw to check my platelets, etc (poke #2), went pee for the last time, got situatated on the bed, and got a lidocane shot (poke #3) and my first IV placed into my right arm (poke #4). They moved on to the left arm, and that’s when things got real. I warned them that my left arm has never been good for donating blood. I told them that my left arm is not a giver. I suggested that they use my right arm to take the blood out and use my left arm to send the blood back in.
This is how a stem cell donation works: both arms are hooked up to a centrifuge machine. One arm has the blood sucked out by the machine, which then spins it and separates the stem cells from the blood. Then the machine keeps the stem cells and sends the rest of the unused blood back to my body through my other arm. So I had to lie very still for hours with both of my arms accessed by IVs. If I moved even the tiniest bit, the machine would beep, sending the nurse in to readjust me.
Back to getting me hooked up - my nurse used a vein finder on my left arm to assess which vein would be the best. She picked one and gave me a shot of lidocaine (poke # 5) and then put in the IV (poke #6 ). She tested it, and it was a no-go. She called in a specialty nurse who had an ultrasound machine. He found a good vein behind my bicep and told the nurse to get the “big needle”. Fun. There went another dose of lidocaine and an IV poke again (poke #7 and #8 ). He made a joke that the lidocaine shot only feels like a bee sting. Well, thanks for that. Because I am terrified of and allergic to bees. So that quirky little joke…not helpful. But anyway, after the “bee sting” and IV deep in the bicep, we were up and running. The machine was on, and the cells were flowing! The right arm was giving, and the left arm was receiving. It was going well for about an hour and a half until my nurse decided to switch the tubing so that the left arm would give and the right arm would receive. WHY? Why would she ruin a perfectly good thing? She thought the tubing was compromised because the machine was closer to my left arm. I told her that my left arm doesn’t “give,” but there she went, switching it up. That’s when shit hit the fan, in my opinion. Shortly after the tubing was switched, the machine beeped. Something was wrong with the left arm needle. She tried flushing it, and all of a sudden, I was almost yelling in pain. My phone rings, and Andrew is on the line, telling me that Quincy is having a challenging time with his radiation treatment. “I can’t talk right now”, “You HAVE TO, your son needs you.”.. “Oh my god, I can’t,” and then I hear Quincy’s sad, tired voice, “Hi, Mama”. Andrew tells me that Quincy isn’t handling the radiation; he’s throwing up, and it’s hard for him to stay still. I’m trying just to suck it up and talk my son out of HIS shit while my needle flush is infiltrating my fucking SHOULDER! Jesus Christ, I was in so much pain. I just had to hang up on him. So, as I’m dealing with this excruciating pain and guilt that I hung up on Quincy, the nurse tells me that the needle may have slipped out of my vein. She tries to reposition it, and it literally hits a nerve in my arm, making me SCREAM (I’m calling that poke #9, I earned that one). The specialist nurse comes in again with his ultrasound machine. He finds another vein, and there goes another “bee sting” and another IV poke (#10 and #11). They turn the machine on again, and we are up and running for about a hot second. Two more lidocaine and IV pokes (we are up to 15 pokes now), and we are FINALLY back in action.
“She doesn’t have good veins”, he whispered too loudly. Thanks.
I was in sheer terror every time the machine beeped.
Oh crap, not another problem.
I don’t have good veins.
Oh no, the nurse’s face looks worried, what’s wrong?
Are we going to get all of my stem cells out?
Is this donation not working?
Quincy needs my cells.
What if my vein collapses again?
Are they going to have to use an even longer needle and poke into my leg to get a vein?
What if this doesn’t work?
Am I going to save my son’s life today?
It hurts to cry; stop crying.
Come on, girl, 4 in 8 out… let’s breathe. Deep breaths.
Relax your arm muscles, let the blood flow through those “bad veins” of yours.
It’s up to you to let this work, fucking relax!
I cannot believe any of this right now.
I keep getting poked, I’m terrified, I’m stifled, I’m angry.
I’m 52.
I’m a Mother like no other.
By the way, where ARE my arms? I cannot even feel them anymore. Where did they go?
Does that sound like a torture movie to you? Physical and emotional torture.
They had to turn the machine's speed way down so as not to disturb my left arm veins. They also switched the tubes back so that my right arm was giving the blood, and the only thing my left arm had to do was receive the unused blood. That’s an easier job, I guess. For another hour, my Mom and I just kicked back, watched a show, and relaxed. Just kidding. No relaxing. I tried watching a show, but I basically watched my nurse work very hard to keep the peace between my veins and the beeping machine: fiddling with the tubes, turning off the beeps, repositioning my numb arms, typing notes in her computer, checking this and that, back and forth, up and down… it was daunting to watch as I held in my pee. Damnit, I had to pee so badly.
Finally, we were victorious! All the cells were collected. How many hours was I on the machine, excluding the times they turned it off to torture me with pokes? Three and a half hours. I was expecting to see a massive bag of blood, bulging at the seams, but it wasn’t. They probably got about 12 ounces, but apparently that was what they needed.
She pulled the IVs out and bandaged me up. I slowly sat up and went to the bathroom. Whew.
We had a lovely delivery of cafeteria salad, chicken fingers, and chocolate pudding. Our nurse walked us all the way to our car, gave us hugs, and told us that she’d pray for us. My mom drove us to Rady’s, where Quincy was recovering from radiation session #1. A few hours later, I accompanied him in the transport ambulance to radiation session #2.
This is all for you, Quincy. That’s all I kept thinking, and it was the only thing that kept me strong and brave.
It was all for you.
