That one time I put my blood in my refrigerator so I could participate in research

PHOTO: The blood samples staying refrigerated.

PHOTO: The blood samples staying refrigerated.

In a previous post I mentioned that I am participating in the Gliogene study. This is a study where medical institutions like MD Anderson Cancer Center and UCSF are teaming up to find out if there are any genetic links to people with brain tumors. And since my grandfather (now deceased) and I both have brain tumors I signed us up to participate in the study.

Since my grandfather is no longer living, Gliogene sent a form to my uncle (who is my grandfather’s power of attorney) to allow access of his medical records.

As for me, I participated in a 45-minute interview where I answered a lot of questions about both my and my family’s medical histories.

Gliogene also wanted a blood sample from me. Via UPS they mailed me a blood draw package containing three tubes, a freezer package (to later keep my blood cold in transport back to MD Anderson), and a pre-paid Laboratory UPS overnight mailer.

I brought the blood draw instructions and tubes with me to Kaiser. The phlebotomists seemed confused as to why I was there for a blood draw that was not authorized by a Kaiser doctor—as if I was a bit crazy to want my blood drawn "just for fun."

I gave them the note from MD Anderson with instructions. I think the "MD Anderson Cancer Center" letterhead played on their sympathy and they waved me into the back where they do the blood draws. "Come on dear, we’ll draw your blood for you."

Since I had my blood taken around 6 p.m. I couldn’t get the UPS lab mailer picked up until the next day and my shipping instructions said to put the blood in the refrigerator until then.

So here is where the weirdness kicks in: there was human blood in my refrigerator for a night. (See: photo at the top of this post.)

As I put the tubes in the fridge and began to close the door I stopped and paused at the eerie image. I mean, how often does one have human blood in their fridge? I guess if this were blood of unknown origin it would be a freaky sight. But it was my blood in there—I knew where it came from and it was no big deal, really.

And this made me think about all the wild stuff I’ve dealt with over the past two years. (Actually, all the wild stuff both Brett and I have lived with for the past two years.) And if you are reading this blog, you are in the same situation as Brett and I. You have cancer, or you are a survivor monitoring your cancer-free life, or you are a care partner or family member who knows what this life is like.

At what point do you stop and think, "Holy shit! I am so used to this life it doesn’t even freak me out that my own blood is hanging out in the fridge as if it was pickles or cottage cheese."

I had a similar experience back in 2009 when I was transporting brain tissue from Kaiser in Sacramento to UCSF. The tissue was in a yellow bubble wrap envelope and I was very curious about what it looked like. I was told not to leave it out in extreme heat or in direct sunlight, but other than that it looked like a regular piece of mail.

I kept telling Brett and Bob that I wanted to open the envelope and take a peak and they told me I was sick to even think about it (they said this in a joking way). But then, at one point when I was left alone, I broke into the envelope and unwrapped additional bubble wrap that was protecting the slides and… I… was completely disappointed. I was hoping to see a chunk of white/gray brain tissue with obvious “brain squiggles“ (sulci and gyri).

But no. What I saw was a non-descript skin flake between two glass slides. It looked like someone took a piece of dry flakey skin and set it up for viewing in a microscope. Bummer.

Technically I was looking at a part of my own brain but I wasn’t weirded out in the least. If anything, I was part fascinated, part let down.

What about you? At what point did you realize you’ve gotten used to your own cancer (or the cancer of a loved one)? And if you still haven’t gotten used to it, do you think you ever will?

Fun fact: The phlebotomist said it would take my body about one hour to remake the blood in the three vials. I thought that was cool.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
Previous
Previous

Is anyone listening?

Next
Next

I might have nystagmus