Thursday, May 30, 2013

Go Donate! Part Three - You Are the Chosen One

So hopefully you've decided to join the bone marrow registry and you have completed Step One and Step Two. Now what? Well, hopefully you'll be chosen to save a life. As the Chosen One, you will undergo a procedure to harvest your bone marrow/stem cells (see this post for more on types of harvesting transplant material.) 

The procedure depends on the patients needs, so I can't really tell you exactly what will happen. However, I can share with you my sister's donation experience. The procedure she underwent is the most common procedure employed these days because it is safer and less invasive for both recipients and donors.  

Below is an account written by my sister. I've added pictures and diagrams to help. My comments are in red. 

Enjoy, Chosen One! 


I am so grateful that I was a 10/10 match for Wendy.  I had no idea what donating method she was going to need, from something as extreme as a bone graft to a peripheral blood stem cell (PBSCT), but of course I didn’t care. After we found out I was a match, I knew I had the easy part. It was Wendy who had the hardest job.

Check out some of what I had to endure here and here and here.

Wendy’s BMT doctor recommended a PBSCT, where stem cells are collected by a process called apheresis (explained below). The whole process was pretty simple for me: there were only 3 steps I had to take after finding out we matched (see more on HLA-matching here).

Step 1: Get some blood tests!

About a month before collection I did some blood tests to make sure I wouldn’t give Wendy any additional diseases like Hepatitis, (yea that is not a great way to treat cancer.)

Step 2: Get some shots!
For 5 days prior to collection I went to the apheresis room at Cancer Clinic and got a little shot in my stomach. They like you to do it around the same time each day, but I didn’t even need to make an appointment. 

The needle is the same size needle as insulin needles that diabetics use. 

The injection is a drug called Neupogen which boosts the number of stem cells in my bloodstream (see this post for more info on where you can harvest bone marrow/stem cells). For example, normal white cell count is 4,250-10,000 cells per millimeter cubed and on the day of collection, my white cell count was 66,000!! I felt like a super hero. (My counts returned to normal levels in a few weeks and I was once again just a regular person.)

Neupogen is the shot I would get to help boost my white count when I had fevers in the hospital!

The only side effect I experienced was slight soreness in my bones. I just took Ibuprofen and that was enough for me. I know they would have prescribed me something stronger if I said I needed it, but I didn’t. The soreness was in my lower back, but it was similar to achiness I would get when I was on my period. Sorry men, this comparison probably doesn’t make sense to you.

Step 3:  Apheresis/Collection day! 

Apheresis is the process (described further below) through which stem cells are harvested from the donor's blood stream.

The machine working away:

My Collection Day was Wendy’s transplant day. That seemed amazingly fast to me. Every PBSC donor collects about 4 cups of fluid (took about 4 hours for me which is average) and the goal is to collect at least 1-2 million stem cells per kilogram of the recipient’s weight. 

I arrived at the apheresis room early in the morning on May 29th, 2012. (My transplant was scheduled for 4 PM that same day.) The room was nice and private-ish because it was a small room with just 6 patient chairs and a staff of 3-4 specialized nurses. They gave me a medi-bracelet, and I went to the restroom (a very important step) before they hooked me up.

The nurse hooked me up to the apheresis machine by putting one needle in each arm. I asked her put the needle in my forearm after she started feeling around my wrist for a juicy vein (personal preference). So the way it works is that the blood from one arm goes into the machine where it removes the stem cells (along with a small amount of plasma and red blood cells) and returns the remaining blood and plasma back to me through my other arm. It’s sort of like a dialysis machine. I never felt any different because I think there was only a half pint of blood outside my body at a given time. The entire process was painless for me, minus the small pinpricks when they hooked me up to the machine.  The nurses were so nice to keep me comfortable; I think I was under 5 blankets! (hospital blankets are kind of thin….)

My chair was a very comfy, electronic recliner with a personal TV hooked up to it. There were a few other donors in the room (donating various blood fluids) who were reading, napping, watching TV, or on their computer. I knew I was going to be there for about 4 hours so I brought some home videos to watch on my laptop to help focus my energy on what and why I was going through this process.

Aw! All cozy! I was already in my hospital room, awaiting my new stems cells, so I didn't get to see any of this. (She's not a morning person and was really tired when this picture was taken.)  

While I was donating, my parents were in the main hospital in Wendy’s room, but they each came to visit me for maybe 20 minutes each. They just visited for a just short time each because I had told them I preferred to mostly be alone so that I could just focus. And that is what I did for the most part of 4 hours. No TV. No reading. I tried to focus on what I was doing. I would try to visualize in my mind and I would say things like "ok cells, you are just going to a new home”, “we are the same, we are the same", "Heal her, heal her", and just tried to focus on positivity and just love. I just wanted to do my best to donate and also focus on healing and tell my cells to not attack her. (Stay tuned for my post about graft versus host disease.)
I won't say the hours flew by quick, but I was surprised when I realized it was almost over. I was comfortable almost the entire time. It was only about the last 45 minutes that I felt uncomfortable from not being able to move my arms. During that time I had to put more energy into not thinking about it and not let the time and stiffness bother me (I did not want any negative feelings to attach to my collection).

Then it was over. 

They unhooked me, I had some juice, I went back to our rented condo to take a nap, and then returned to the hospital to wait with my family for the stem cells to get delivered.

Wendy needed at least 3-5 million stem cells for transplant. I collected 18 million! (The power of positive thinking!) The whole transplant thing was so simple to me. I came in the morning for my collection, then my stem cells got sent to the lab to count/estimate the number of stem cells in the collection, and then late afternoon the bag of fluids with my stem cells was transplanted into Wendy! It’s weird man, but I am so happy and grateful that this was possible.

Overall Time Investment: 

I really wasn’t concerned with with these details as you can imagine. But if you are curious, here is some info about how long each step took:

- Getting my blood tested: I probably did this on a weekend day or after work and it took 5 minutes maybe.

- The 5 Neupogen shots: I would say this took 15 minutes out of my day for 5 days. I know of a person who signed up for the bone marrow registry through their work and when that person got matched to a recipient, a nurse came to his work to give the shots! That is cool.

- The day of the collection: I woke up extra early and spent 4 and a half hours in the chair. I took a nap afterwards because I didn’t start my job yet, but if I had chosen to work that day I would have been able to. So I would assume the average person would be able to do this and only have to take half a day off of work if they needed to. I think my work even lists this as an official absence: ‘Organ donor/bone marrow’. Pretty cool.

Also the majority of insurance covers all donation procedures. My insurance covered my sister's donation process.

Please contact me through the comment section if you have any questions for me!  I can also email you personally if you prefer to ask privately.

Wednesday, May 29, 2013

Happy Birthday to Me!

If you remember from this post, I was "reborn" on May 29, 2012.

So today was...


(The cake actually said "HapPy 1# Birthay", so we edited it a bit.)

Friday, May 24, 2013

My Transplant: A Foiled Escape

So, dealing with a transplant, mucositis, and insane hallucinations was nearly impossible. Add to that my body struggling to recovery after Bone Marrow Drano, I really don't know how I survived.

Not only did I see things that weren't there and say things I don't remember, I also did things that, to this day, I cannot remember.

One night, alone in my hospital room, I tried to pack up and leave:

I then proceeded to wander around the room, packing up my clothes. I don't know how I even managed to get out of the bed by myself because I had my IVs to drag along with me. I need at least one person to help me get to the bathroom, and somehow I made it all the way around the room without pulling out all my tubes. Here's me doing the cancer shuffle around the ward, lugging the Ol' Pole a' Machines around:

The next day, when I woke up I started to cry because I thought the nurse was trying to kidnap me. This is what I saw:

Of course he wasn't kidnapping me. He was trying to get me back into bed because apparently I was trying to leave again. This is what it actually looked like:

Looking back, I can laugh at these experiences, but at the time I was terrified. I had done something I couldn't remember, something that I was sure I didn't do, yet everyone said I did. I even later found the bag I started packing, and it was half-full with my clothes that my mom had put in a the little dresser.

Not only that, but I really could have killed myself as I tried to pack up and leave. I could have slipped and fallen. I could have pulled my port out and bled out. Fortunately the nurses at my hospital are diligent and they found me wandering around right away before I could hurt myself.

Despite the danger, however, it makes for an amusing story. At least I can say I kept my nurses on their toes. There was never a dull day in my hospital room. 

Thursday, May 23, 2013

My Transplant: No Filter

My body was experiencing cellular upheaval after my transplant. Along with the mucositis and the pain meds, I was experiencing disturbing hallucinations because of all the opiates I was on. While hallucinating, I would say weird things out of the blue, often startling and confusing the hell out of those around me.

Fortunately my sister recorded some of what I said (I swear, I couldn't make any of these up if I tried):

One day, I turned to my sister and said very seriously, "Jessie, you have been chopped."

When the cleaning lady was cleaning my room, my sister helped me put on my mask, but I resisted, saying, "But it's just a phone!"
Sister said, "No, it's your mask. You have to wear it."

I said, "Did you talk to Mom?"
Sister said, "Yeah."
"Ok, good. I thought he stole her car."
"[Name of one of my nurses]... No, that doesn't make sense..."

This also happened:

Here are some other things I said that I can't explain:

"Drive safe! Be my valentine?"

"Drive safe! Be careful! Texting and driving is scar-dangerous!"

"Heeeey Boo Boo! I'm smarter than the average bear!"

"Used to hang out with all them!"

"Relaxing is an Olympic activity for me."

"My shoes are flying!"

"Who was just in here talking about mountains?"

After the transplant, I got multiple nose bleeds, so the nurses shoved sticks up my nose to stop the flow. One nose bleed would have just kept bleeding until I died because the treatment destroyed all my platelets, hence the need for nose tampons. Just imagine shoving a large popsicle stick up your nose until you think you'll jab your brain, and then imagine those sticks swelling up to the size of a heavy-sized tampon. It doesn't feel great.

But one occasion, my drug-adled mind thought I could handle a nose bleed myself:

Wednesday, May 22, 2013

My Transplant: That Bike Keeps Staring At Me...

Around Day +4 (four days after Transplant Day 0) I already had mucositis bad (described here). Real bad.

To stave off some of the pain, I was on heavy-duty opiates. My doctors made daily adjustments to my pain med dosage to ease the pain, but also to keep my hallucinations under control. My nurses would check in with me a few times a day and ask "On a scale from 1 to 10, how is your pain?" and, "On a scale of amusing to psychotic, how are your hallucinations?" They didn't want to give me too much to cause permanent damage, but they had to give a substantial amount to keep the pain at bay. It was difficult to mediate both, and often it didn't seem like either issue was mitigated. This left me with a lot of pain and a lot of hallucinations.

I remember very little of my three weeks in the hospital. I think that's probably a good thing because the few memories I do have are filled with horrendous mucositis, anal seepage, and painful vomiting. There was little amusing about the entire process. At one point my nurse checked my breathing and told me my right lung was "diminished", which I can only assume is one step down from a collapsed lung. I had to do special breathing exercises to prevent permanently damaging my lungs.

In all seriousness, lot of my hallucinations were frightening and frustrating. Looking back, however, my loose grasp on reality was hilarious!

Some of my hallucinations were adorable. I saw dogs and cats running around people legs and around the floor. My cat was a frequent guest as well.

Some hallucination were gross. I would hallucinate bugs all over my room, to a point where I was concerned that my room was not as sanitary as the doctors had told me.

Some were creepy, as in the time when I thought the exercise bike in my room was a really tall lady staring at me:

SIDE NOTE! I had an exercise bike in my room:

It was there because I lost almost all of my muscle mass and I needed to do some sort of exercise each day to increase my chances of survival. (This was in addition to my daily exertion of shuffling to the toilet and back, a trek that seemed like climbing Mt. Everest.) Since I couldn't leave my room for the bulk of my hospital stay, they offer these bikes to transplant patients. After hallucinating that it was a woman staring at me, we had to cover it with a blanket.

Others hallucinations were just confusing. Doors appeared in walls and opened onto mysterious rooms:

And then one day a toddler in a yellow dress stood at the foot of my bed and stared at me. She left when I got mad and asked, "Who let this kid in here?!"

Every day I asked my mom if they had moved me to another room because I was convinced the room I was in was completely new. She continued to assure me that I had been in the same room since my transplant. And then I got tired of her disagreeing with me all the time:

Despite everything, the hallucinations certainly brought a spark of excitement to a reality that was filled with pain.