My PBSC Donation Experience — Carolyn Mueller

On this beautiful, sunny day in June, I'd like to take a look back on the dark days of February. My least favorite month, to be sure, but one with a story to tell.

This past February I had an interesting experience. I was given the opportunity to donate Peripheral Blood Stem Cells (PBSC) for a cancer patient!

A lot of people have asked me about the experience since, so I figured what better format to tell my story than through a blog post. Obviously, the donation experience is different for everybody, so I don't want to generalize too much here. But this is basically how it went down for me.

To start my story I'll have to rewind a bit. Let's go back to August 2009. I was 22 years old and fresh out of college. I'd recently completed a summer working at the Zoo's Camp Kangazoo, but after that was over I had no job, no grad school applications and no plans for life whatsoever. Well, that's not entirely true. I did have a trip to Spain and Austria booked for that October, so I guess that was a "plan" of sorts, but that was about it.

In the spirit of my open ended adventure embarking into real adulthood, I decided to join my good friend, Alex, on a trip to Colorado for her cousin's wedding that August. As part of the wedding festivities, everyone attended a Yonder Mountain String Band concert at Red Rocks Amphitheater. It was a gorgeous, Colorado summer evening and Alex and I enjoyed our fair share of wine as the concert got started. There was a table set up at the event by an organization called DKMS. DKMS actually stands for Deutsche Knochenmarkspenderdatei because it's a German bone marrow donor bank working to "Delete Blood Cancers" like Leukemia. The table at the concert was staffed by a few young women who were trying to convince concert goers to swab their cheeks and sign up for the national bone marrow registry.

I have a friend/sorority sister who donated bone marrow to her younger sister when she was in high school. With this story in mind I thought, sure, why not. Alex and I figured we had nothing to lose in helping someone--and remember, ZERO life plans--so what was the harm in signing up?? I swabbed my cheek and then promptly forgot about that moment for the next eight years.

Alex and I at Red Rocks the night I signed up for the registry. Ah, to be young and carefree again! And capable of drinking more than one glass of wine.

Fast forward to 2017. Now, I have plans. Lots of plans. Sometimes, I think, too many. I've been a zookeeper for almost eight years (yep, I started in the Children's Zoo shortly after the above trip to CO), I've been working as an author for five years, I've moved three times, saved some money, spent some money, traveled as much as possible, ran a few marathons, met John, dated forever, got married and attended over 40 weddings together. I did not spend one moment of that time thinking of DKMS.

That was until early 2017, when, after a school visit I got a voicemail from a lady named Marissa. "I just wanted to inform you that you're a match with a cancer patient," she said. What? I thought. Sure, I remembered that night at Red Rocks (despite the wine), but still, was this legit?

Like any self-respecting girl of the 21st century, the first thing I did was google it. I read a bit about DKMS online and decided that it sounded like the real deal. So, I returned the call.

Marissa explained to me the basic process and answered any questions and concerns I had (i.e. Could I keep running/ever run again? Or have kids? How much would this cost? etc.). She also made sure that I understood that even though I matched I may not be able to donate, and it likely would be PBSC not bone marrow. Often a patient's condition can change and they might become too sick to receive a transplant, or medical plans or insurance changes. Also, I might not physically pass the requirements needed to donate and on top of that it was all about schedules and timing.

About a year after the Red Rocks trip, I'd taken another trip to visit Alex who, in the summer of 2010, was now living in Colorado. Together, with our friends, we went white water rafting. When the guide was giving us our instructions for the journey he constantly said things like "IF you fall in the water this is what you do (but that is NOT going to happen)...and IF our boat wraps this is what you do (but that is NOT going to happen)..." and on and on. Well, everything he told us was likely not going to happen on that trip DID, indeed, happen. Our boat capsized, we all fell in the water and the raft wrapped around a huge boulder for several hours.

So, when Marissa gave me all of her disclaimers about what probably wouldn't happen, I didn't really buy them for a minute. I knew/had a feeling that if I gave my consent I was in this thing for real. At this point in my life I had a lot to lose. Lots of plans, remember? Plus a very difficult, inflexible work schedule and a physical job. But I also feel like I am, in general, a pretty selfish person who tends to just go to work and focus on my own projects. I don't volunteer much or really help out in my community, and here it was, an opportunity to do just that presenting itself right on my doorstep. Or on my voicemail, rather. I told Marissa I was in. I'd like to move forward with the donation process.

The first step was to visit my local LabCorp (one I was quite familiar with from my good, 'ol Accutane days. Ah, memories.) to get my blood drawn to be sure I was a close enough match. I did this, it went well, and about a week later, after a confirmation call from Marissa, I was able to move forward with the process.

I was told that the cancer patient I matched with was a 45 year old woman with Leukemia. John lost his Aunt Barb two years ago to cancer, when she was close to that age, so though I did not know the woman's name or anything about her, I sort of kept Barb in mind during this time. She was my inspiration and motivation to see it through and to try to do my best to help this person who, of course, had a family and friends who loved her just as Barb did.

The only thing I was really told about the patient was her age and sex. Other than that it's all anonymous. It is important to note that no money was exchanged during this process, and that I did not spend a cent on anything related to the donation--travel costs, food during travel, medical tests and expenses, John's travel costs for the donation etc.

The next step was to fly to Washington D.C. to have a physical at Georgetown University Hospital. Georgetown is apparently a hub for bone marrow/PBSC donation, and one in which I could supposedly be scheduled rather quickly. This was February, and I was still planning on running the Boston Marathon in April. Obviously, running a marathon (even Boston) is no excuse to not try and help somebody, after all, it's not how I bring home the bacon. That being said though, I did hope to get the donation done early enough to be able to return to my training, if possible. I was able to schedule my physical for Thursday/Friday on my weekend so that I did not have to miss work for this part of the process.

Shortly before my trip to D.C. Marissa called me again and informed me that the patient's doctors were requesting bone marrow. Remember the raft story? Yep, it's true, not only was I a close enough match and the schedule was open, but they also wanted bone marrow, all of the things Marissa had said likely would not happen.

My initial reaction was fear, but for a stupid reason. I'm not afraid of pain or the process of recovery (sort of a lesson you learn running marathons, I guess?). My fears were a lot sillier than that. Anyone who has known me for any significant length of time knows that I have a deep and irrational fear of throwing up. I'm not proud of it, but it's true. The last time I was under general anesthesia was when I had my tonsils/adenoids out when I was 9, and I threw up a lot after that, so I was kind of scared.

Of course, cancer patients often have to deal with that and much more, so it was very silly and immature of me to be afraid for that reason. And, I told myself, being afraid is no excuse not to help someone. Death is always a risk with anesthesia, Marissa told me. But I knew that that risk was minimal. I told her, yes, I was willing to donate the bone marrow. I'd deal with my fears later.

I read a lot about bone marrow donation online in the next few weeks, and I talked to my friend Eliz who had donated to her sister. I found out that it wasn't quite as painful as public opinion makes it out to be. I'm sure it's uncomfortable, but Eliz said that the worst part was recovering from the anesthesia, and lots of online blogs said that it just felt sore, as if you'd been punched in the lower back or something, which I knew I could deal with. After talking to Eliz and reading blogs online, I became much less afraid and felt fully committed to the process.

Just before my trip to D.C. for my pre-donation physical, however, I got another call from Marissa. She informed me that since I'd had an avulsion fracture of my iliac crest (aka broke my right hip bone) when I was in high school, I was not going to be allowed to donate bone marrow.

I was surprised to react to this news with first anger, and then sadness. First of all, I told her, did they not see that on my medical records when I first filled out the numerous forms required to donate??? Second of all, I was a perfectly fit, healthy, 30 year old lady, and I was willing to donate! Why did they want to waste such perfectly good bone marrow?? Then, when I realized that I had no dog in this fight, I felt sad. Like I said, when I was first asked to donate marrow I felt nervous, but then I completely got on board and had mentally adjusted to the idea. I felt sad that I couldn't give the patient what she needed. I really felt let down and disappointed. I never claimed to be normal, by any standards, but I'm just telling it like it is. This is how I felt about it.

They still wanted me to donate PBSC, so shortly after our conversation I flew to D.C. This was very exciting for me. I don't travel a lot for work or anything, so anytime I get to fly someplace new it makes me pretty happy--even if the majority of the trip was going to be spent inside of a hospital. When I got into town I was able to get dinner with my good friends from college, Chloie and Matt (who I call Calbs), which was an added bonus, and they drove me around to show me some of the sites of the city. The physical took place the entire next day. I had to give blood samples, urine samples etc. etc. and have a full physical. Of course, this too was an added bonus. Free physical and blood work! Can't complain about that.

I was declared healthy and ready to donate PBSC. According to Google, "the same blood forming cells that are found in bone marrow are also found in the circulating (peripheral) blood." The blood forming cells are collected during donation and given to the patient in need. The Georgetown doctor was very nice, and I explained to her that I felt perfectly healthy and if she wanted the bone marrow instead of PBSC, than she should just take it. She told me, no, they could not take bone marrow from someone who had fractured their hip, but that PBSC would be more than adequate for my match, and that in the last 10 years donation has trended that way anyway. Improving technology and medical advances have made PBSC donation as valuable as bone marrow for many patients. Finally satisfied with this answer, I left the hospital, spent a whirlwind few hours at the Smithsonian Natural History Museum, and flew home with my donation date scheduled for the end of the month.

Checking out the Smithsonian Natural History Museum

Now, here's the meat of my story--the actual donation. The whole thing started about a week before my return to D.C. I had to get injections of a drug called Filgrastim for five days leading up to the procedure. The injections arrived in a package that I had to put in my refrigerator and take with me to a local Urgent Care. Filgrastim is a drug that helps the body make more white blood cells and stem cells for the donation. After five days my body would have enough excess cells to collect some for my match.

It was definitely a time commitment to get the injections. I had to drive to an Urgent Care every day after work. The folks at the Urgent Care did not do Filgrastim injections often, so each night was a process as they all figured out the formalities involved. The injections were pretty large, so they injected me in a different body part each night so that I would not get too sore. All in all I think I got shots in both my arms, both my thighs and both of my butt cheeks. So pleasant. The shots hurt as much as any shot does (like a bee sting) but I didn't really mind all that. The worst part of the process for me (including the donation day) were the side effects of the Filgrastim.

For example, Filgrastim might make all of your bones ache, might give you a headache, might influence your appetite and make you feel fatigued. Just like my whitewater rafting experience, I experienced ALL OF IT. During my physical I'd asked the doctor if it was safe for me to continue my marathon training while taking Filgrastim. "Safe? Yes," she said. "But you're not going to want to. I'd suggest resting for the week while you are getting the injections."

Lady, I thought, you don't know me. I'm going to keep running. Ha. So funny.

Of course, the good doctor knew best and was totally right. I did NOT want to do any running and was quite incapable of it during that time. I began to feel the side effects on the second day, waking up with an immediate headache that lasted for about eight days total. I think that the entire process would have been better and easier for someone with a desk job. But, alas, I do not have a desk job and had to move around all day Sunday, Monday and Tuesday in order to keep up with my keeper work. My bones ached in a very strange way. I felt like I could not move my body, I mean, I was literally shuffling around like an eighty year old. If I tried to take a large step it felt like my hips locked up. I was surprised, and humbled, to discover that the most painful part of my body was my right iliac crest--the one I'd fractured in high school. I guess the doctor really did know best.

The worst day of all of this was Tuesday. I worked two routines at work, could barely move my body and had a splitting headache all day. You also cannot take any powerful headache medicine while on Filgrastim, so that didn't help. Tuesday also happened to be our first married Valentine's Day. It wasn't exactly the height of romance. I immediately put on my sweatpants after work and John picked up some soup from our favorite Thai place, but that's about all I could manage. The next day I was scheduled to fly to D.C. for the donation so I did not have to go to work, and I felt much better.

One bright spot in a rough day was spending Valentine's Day with Kali!

John and I flew to D.C. together. Moving through the airport when my bones didn't really work was awkward and painful, but somehow I managed to make it to the plane. The next morning, we reported to the hospital for the donation.

Ironically, the other donor in the room with me was also from St. Louis. She was a woman in her 50s and I was shocked to hear that she felt no side effects from the Filgrastim injections! I still had a horrible headache, so I kind of felt like a wuss. They started the morning by taking more blood samples, giving me one final pregnancy test and my last Filgrastim injection.

Then the procedure began! I had to lay in a hospital bed with both arms hooked up to IVs. Blood was going out one arm and being filtered through a machine that took out the needed cells, and then it was being put back into the other arm through the other IV. Basically, this meant that I had to lay very still without moving my arms. I thought this would be difficult, but it was not. My arms fell asleep right away and I couldn't even feel them. The process was supposed to take around 6 hours, so I was prepped for the long haul (we'd packed many a Harry Potter dvd).

When the nurses found out that I still had a terrible headache they offered me morphine. "I don't think that's necessary," I told them. "Why not?" they said. "It will help!"

"Well, alright," I said. So they hooked me up to a morphine drip. I've never taken morphine before, and I was surprised to find that it did not make my headache go away, but it did make me feel like I'd had 2-3 drinks, so I was feeling pretty chill.

This is what the donation set up looked like. So attractive. Let's just all take a moment and be glad that it's not still February.

Meanwhile, John was waiting in the hallway because the nurses were having trouble with my roommate's (the woman from St. Louis) IV. After the lab work was run the doctor came in and informed me that the Filgrastim had worked really, really well on me and my white blood cell count was off the charts. It had not worked as well on my roommate--hence the reason why I had ALL the side effects and she felt none. Not sure what is worse--eight days of headache/bone aches or being stuck with an IV six times, but that being said I did feel pretty bad for her. She was a good sport and very patient with the process.

Finally, my roommate got all set up and John was allowed to enter the room. He helped me eat lunch since I could not move my arms, and we watched some movies together. Just under three hours later, the nurses informed me that I was done! They told me that the donation had taken the least amount of time possible because I have big, fatty veins, so I was, obviously, pleasantly surprised about that. I had been very nervous about having to go to the bathroom because I was told that if you have to go during the donation then you had to use a bedpan. So, I was very pleased that this was not an issue for me at all.

And that was it! That was all there was to it. John and I returned to the hotel. I was still tired and had the headache/bone aches (because, remember, I'd received the last Filgrastim injection that day) so we took a nap before meeting up with some D.C. friends for dinner.

D.C. has a lot of awesome restaurants, including this one that served kettle corn for an appetizer!

The next day I was still slow and had a headache, but felt up to going to a few museums with John before we flew home that night. I worked the next day, which was rough, and continued to have a headache for a while, but, like I said, I think if I worked a desk job I might have experienced a faster recovery. All in all, I felt back to my usual self and fully returned to my marathon training (as in not super fatigued on runs anymore) about 1.5 weeks after the donation.

Thought this was an apt quote to keep in mind for 2017...

John, enjoying lunch at the Museum of the American Indian

D.C. is such a neat town with SO many things to see. I'd love to go back again!

The process was both easier and harder than I expected. DKMS was great and super accommodating along the way. Everyone thanked me for donating and made sure that it was a smooth experience. However, the Filgrastim injections definitely made me feel worse than I expected to, again, likely aggravated by my not so typical work life and schedule. At the end of the day though, I am very happy that I was given the opportunity to donate and I'd recommend the process to anyone. No regrets, whatsoever.

Several months later I was given the best news! My match received my donation and is doing well! By next February we will be allowed to contact one another, and hopefully I will learn that she is continuing to heal. That news, of course, made all of it worth it. To participate in someone's care like that is an opportunity that I will always cherish. I am very grateful for that table at the Yonder Mountain String Band concert in 2009 and grateful for the experience I had with DKMS.

One of the best/most exciting parts of the experience was the social media factor. I debated posting something about it on social media because I can sometimes get a little self-conscious about health stuff, but with John's encouragement, I went ahead and posted anyway. I was blown away by the response! Lots of people commented and shared my post and many, many people contacted DKMS to get their own cheek swab kit in the mail so that they too could sign up for the registry. Some of my friends posted it about it too and their friends signed up for the registry. It really spread quickly, in the best possible way.

If you are interested in donating/joining the registry you can sign up by clicking HERE.

Many, many cancer patients need to find matches and it is a wonderful feeling to have been given the chance to help someone out in such an important way. I would gladly donate again, if asked (yes, I will stay on the registry and may even be asked to donate to my match a second or third time if needed).

This blog post was really long and hopefully answered any questions about my experience, but I'm always happy to answer more if you are curious and want to reach out.

So, that's it. A story that started in the summer of 2009 and ended in February of 2017. I think that 22 year old Carolyn would have been happy with 30 year old Carolyn's decision to donate. In 2017 I may have more of a life, with plenty of goals and responsibilities, but I hope that whatever age I am and wherever life takes me I will always work it into my plans to try to help someone when the opportunity arises. I'm very grateful to have had the chance.