Thursday, September 29, 2011

A most unusual case

Right now, doctors across the country are examining scans, slides, tissue samples, cell counts, and countless lab results in an effort to determine what exactly might possibly be going on with my B-cells. Three years ago, I developed a B-cell proliferation (a facetumor) in my right naso-pharynx, a result of nearly 24 months of chemo and in response to the presence of the Epstein-Barr virus. Three years later, and the facetumor has returned but there is no EBV or any other viral activity to explain its reappearance. This tumor is a super-anomaly because there are no B-cells anywhere else in my blood. The drugs I received three years ago to Destroy the Facetumor! did such a good job that they essentially wiped out all of my B-cells as well as my body's ability to regenerate those cells. To recap: my secondary immune system was annihilated three years ago. No more B-cells. Three years later, and somehow (?!) an excess of B-cells have glommed into a mass in my Left sinus cavity. Literally, it is exactly three years later.

Perhaps a life-recap is in order here. The last time I posted here was nearly Seven months ago. Wow. Wow, really, is all I can say. Amazingly, I moved to Denver on April 31, 2011. For two months, I lived in an apartment far away from everything. I was moderately happy because I was finally living on my own, but it wasn't what I wanted. Then, on July 1, 2011, I moved into an apartment in the heart of downtown Denver. It's huge, beautiful, all-wood floors, and exactly where I want to be right now. My roommate, who I found via Craigslist, has turned out to be one of the most interesting and awesome people I've ever met. We are simple people: we have a futon and two mismatched tables in our apartment, complemented by a vintage 1950s record player. That's it. It is home.

I transferred to a Starbucks in Denver, and while it is slowly and inexorably eating away at my soul, I know I am blessed to even have a job right now. I have been sending out lots of job applications, but so far, no bites. Underemployment has created a tightness in my chest, a sickening and occasionally lack of oxygen to my brain. But then I remind myself that, good God, I am Alive right now. I shouldn't be alive. Five years ago, my body was shutting down; my marrow had turned against me and was slowly leaching the life right out of me.

Five years later, here I am, alive and (moderately) well in Denver. I've run a marathon; this past weekend I climbed a 13,700 ft. mountain. The entire way to the top, as I was gasping for air and trying to keep up with my hiking buddy, I kept thinking, "I cannot believe I'm here right now. I can't believe I am asking this of myself, this physical activity, and I am powering through and almost at the summit." All of this was so long coming - happiness with life. And yet, it is all tempered by the reality that I still have to deal with facetumors and immunotherapy and PET scans.

Right before I moved out here, I met with a GI doctor in Chicago who determined that my intestinal issues were most likely a result of low immunoglobulin levels (those pesky B-cells). She wanted me to start receiving immunotherapy right away, but I was actually moving to Denver the very day after I saw her. After a week or two out here, I found a doctor who could administer the IV immunoglobulins, although he is technically a pediatric oncologist. After shocking yet another doctor with my labs and low blood counts and persistence at living, I began receiving IV IgG, the immunoglobulin therapy. My intestinal issues resolved themselves pretty much immediately, and my sinus infections gradually went away. I ran with ten others in a relay race covering 200 miles of Colorado. I spent a gnarly weekend photographing the shenanigans and racing of some crazy single-speed mountain bikers.

I found out the facetumor came back, and I just learned today that my doctor here has been in touch with my doctor back in Boston. Neither has ever seen anything like me before. My doctor here said they'll probably want to write something about my case at some point. Because what if this happens to someone else? I'm setting a precedent here. No one knows why this happened, and no one knows what is going to happen in the upcoming months and years of my life. Possibly, I will never regain my ability to grow my own B-cells, and I'll have to be on immunotherapy for the rest of my life. As of now, they will be giving me the same drug I received three years ago to kill the tumor, only now I'll be on a seven-month protocol as opposed to just the four weeks it took before.

Honestly, this is all just one more stupid thing. Others are in a much worse situation than I am. Every single day, I thank the universe or God or whomever for putting me here, for letting me be here today. Life is Incredible! I love everything so much, and I have so much to be grateful for. So, facetumor, you're going to be a pain for a while, but once again, all we can do is power through.

There's my update. I didn't really want to ever have to update this blawg again, but I feel like this is important. Truly, mine is a most unusual case. I am baffling doctors! Hopefully, someone will one day benefit from my going through this. As it is, I'm turning 25 in three days (October 2!). I didn't think I'd ever get to this point, but here we are. Thanks for stopping in. Enjoy your lives today! Find something to look forward to. I'm looking forward to this weekend, maybe some hiking, and definitely some spending time with good friends. Peace.

4 comments:

Shaik said...

Outstanding post! It is absolutely fabulous, i am feeling well to read your awesome post!


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Stacey Stearns said...

This is such a well written post Fridge! Your spirit shines through and I love your determination to beat the stupid face tumor and baffle the doctors :) Go climb another 14 soon!!!

ashley said...

Hey Caroline! I am so proud of you. I will keep you in my prayers as always. I know what it is like, too, to not have a job. Something will come. I hope to make a trip to Denver someday soon. Did you know Chris Bianci is there too? I also have some really good friends that live there if you want to meet them too. Keep on fighting, you are an inspiration to me. Let me know if you ever need anything! -Ashley

fishyoutawater said...

Hi Caroline,

I roamed onto your blog a while back and love the posts you've written.

Like you, I have had and I guess still have "fun" experiences with a pain in the butt face tumor (or pain in the face I guess?). I was diagnosed at age 11 and I've been cancer free for the better part of 15 years but still get wicked random medical issues. I like to think of it as the fine print in that long contract someone had you sign without reading.

Anyway, I'm rambling but wanted to say keep chugging along and look forward to more posts :)