Happy Re-Birthday!

My buddy just underwent his transplant this past Friday. Help wish him a happy re-birthday and send good thoughts and positive vibes as his new cells make themselves at home.

Check out his blog here!

Pretend Human

I haven't been able to post too much in the last month. I've been distracted with my new human life. It's not easy, pretending to be human again. I say pretending because that's what it feels like these days.

Suddenly one Friday evening I was uprooted from my home, dislocated from my familiar neighborhoods, my favorite restaurants and parks. I spent over a year of my life isolated in hospital rooms, getting poked and prodded, groped and palpated, shoved into noisy machines, forced to stand in stuffy glass boxes, told to strip down, put this on, take that off, hold this, stand there, lay this way, sit up, lie back, take this, don't take that, go here, breath out, now breath in, hold your breath. I was a sack of flesh, carried and wheeled and shuffled here and there, defined by the numbers on a computer screen, by scans and X-rays. 

Everywhere I went I was greeted with the ceremonial, "Please confirm your name and date of birth." I'd answer accordingly. The tech or nurse or whatever would compare the notes to be sure that I had answered correctly. I answered incorrectly once. I'd given my birthday wrong. The data on the page didn't add up. Who was I? What was I doing here? Oh, sorry. I meant to say this. Crisis averted. The numbers match. You are the bits of typed ink on the page.

I learned to speak a new language. I learned how to navigate a new world. I became another being, a creature shaped by cancer, devoured by chemo and radiation, and then reshaped by transplantation of foreign DNA. Somehow I emerged on the other side less human that I was before.

It wasn't my choice, and I entered this world kicking and screaming the whole way. If I had to go, I would not go gracefully.

And then suddenly I was set loose back into the world that cancer had so rudely ripped me from. I beamed back down to Earth like an alien abductee, shaken, sore from the probing, traumatized by an experience that I could never hope to fully explain to any other living creature.

So, I walked - slowly because of the fatigue - back into a world that was now foreign to me. How could that happen? It had only been, what, a year? I couldn't believe it had only been a year. I feel as if I have aged ten years in one (maybe this is what dogs feel like). It's as if I've been frozen in ice for decades only to be thawed and awoken into a futuristic, unfamiliar world. (I can go all day with these metaphors, people.)

I try to adjust to the Human world, try to understand their gestures and their language. The language is familiar to me, as if they speak a language that I once knew a long time ago, but have now forgotten. I pick up a few words, but the context is foreign to me. Apparently I belong to this world, that I am a Human as well. It's futile to explain that, no, I'm not Human anymore. They have accepted me as one of their own, so I go along with them. I pretend to be human because it's expected of me.

As far as the Humans are concerned, I'm completely normal. I go to work, I pay my rent, I feed my cat, and I make social appearances and participate in conversations about how dumb Congress is or how they need a stop light at Broadway because it's terrifying turning left onto that street. They ask how I'm feeling and if I'm adjusting to their way of life okay. I say that things are great, because no one really wants to hear the real answer.

I can never fully become human or normal again. The consequences of chemo and the transplant will follow me the rest of my life.     

Graft Versus Host Disease

I've been out of internet for a while so I haven't been able to post about the aftermath of my SCT. But now I'm back, and I get to bore you guys with more lame cartoons and second-hand knowledge. Enjoy!

This post is about Graft Versus Host Disease, or GVHD. Graft Versus Host Disease refers to the literal war between the "graft" cells (donor cells) and the "host" cells (recipient cells) that occurs after a transplant.

When I made this post, my first post on this blog, I knew that my body would become a battleground on which chemotherapy drugs would fight my cancer. Back in December 2011, I never thought I would need a transplant, but looking back that post I realize that post is also a very good depiction of what GVHD is.

The moment my sister's cells entered my body, they began warring with the remnants of my own cells. Now, the reason I had Bone Marrow Drano (see here) was to ensure that my sister's immune system would win this war and have little resistance from my immune system. (Oh yeah, did I not say that a BMT is basically an immune system transplant? Try to explain THAT to your friends!) The way I think of my bone marrow transplant is this: cellular genocide - a genocide in which the complete destruction of the native cellular population is the preferred outcome.

The way my doctors described GVHD is this: My sister's stem cells know that they belong in bone marrow, so once they entered my body they traveled through my blood stream right back to my bone marrow, which, thanks to Bone Marrow Drano, had been cleared of its old occupants for its new tenants.

Donor cells don't know they've left the comfort of their home, and so when they see a cell they don't recognize they tend to overreact and, well, kill it. 

These murderous encounters manifest themselves as GVHD.

The first three months following a transplant the body is in a very precarious situation. Not only is the body struggling to rebuild an immune system that had been wiped out by radiation and chemotherapy, but it must also survive the internal battles being waged by donor and recipient cells as they come into contact with one another. 

During these three months, doctors are on the lookout for three specific types of GVHD, called Acute GVHD: GVHD of the liver, of the skin and of the gastrointestinal tract. For three months post-transplant I was in the cancer clinic almost everyday so my physicians could check my liver counts, check for any rashes, and monitor my bowel movements and my appetite. 

Once the body survives the initial three months post transplant, and you haven't developed serious Acute GVHD, then you are deemed "somewhat normal" and released back into the wild - well, almost. After surviving Acute GVHD, you have a lifetime risk of developing Chronic GVHD.

What's the difference between Acute and Chronic?

Acute GVHD manifests itself in three distinct places:

Chronic GVHD manifests itself, well, pretty much everywhere:

All GVHD, Acute or Chronic, is managed by the use of immunosuppressants, which - you guessed it - suppress the immune system.

But, wait, you ask? Why would you want to suppress an immune system that is no stronger than a wet tissue?

We now enter what I call The Post-Transplant Paradoxical Paradox!

Here's the Paradox as I experienced it: After my transplant, I had no immune system, so I needed my sister's immune system to develop quickly so that I could survive the trip from the car to the clinic without getting pneumonia. Simultaneously, they didn't want my immune system to develop quickly so that my new immune system wouldn't turn on me. Immunosuppressants (for me, it was cyclosporine) facilitated this paradox.

Basically this is what I heard daily:

So, that's the gist about GVHD. Stay tuned for my next post about what GVHD I experienced (and continue to struggle with) post-transplant.

All You Need Is Love - and Kitties

I've moved into my new place. Living on my own, working full time - trying to live a normal human life again. Due to construction on my roof, I haven't been able to move my cat in just yet. I've been deprived of the same kitty snuggles that have gotten me through the worst of my chemo and transplant recovery, snuggles that I dearly need to recover after a long day at work.

So, when a friendly stray ran up to me for pets, I couldn't resist pressing its sticky, filthy, matted little face against mine!

The brief snuggle break got me through the week - and probably also gave me fleas.

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! 

STEP THREE - YOU ARE THE 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 29^th, 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.