One year ago today, I spent over thirteen hours at Bronson Hospital in Kalamazoo getting my first treatment of R-CHOP. My oncologist recommended being at the hospital in case I had an infusion reaction to the main drug Rituxan. Mark joined me there along with both of my parents. I remember being relatively calm, sleepy, and not interested in distractions like television or even much conversation. Mark was taking a break from his comprehensive exams to be with us. A friend and fellow NHL survivor had advised me to take full advantage of the room service, which we were allowed to use for myself and one other person. I didn't have much of an appetite, but I ordered as if I was hungry enough for 2-4 people as often as I could so that my family and I would have plenty of snacks. The nursing staff were very nice, and mostly quite sensitive to the reason I was there that day. I do remember one person making a comment about keeping her hair short that was upsetting to me because I knew the medications I was receiving were going to make most or all of mine fall out. It was several hours after we checked in that they hooked up an IV saline drip to my Bard Power Port and started giving me pre-meds like tylenol, benadryl, and Emend. These were to reduce side effects including nausea. They eventually started me on the Rituxan as slow as possible and we watched them ramp up the infusion flow every half an hour. I think that first drug took over five hours to administer. The following four didn't take as long individually, but I know that we left the hospital around 12:30am. According to my 2013 planner I went to work the next day at 10:30am.
It feels significant to reflect on what I was doing a year ago today because I don't normally pause to think about what I've (we've) been through. I find it much more manageable to look to the future or at least get lost in what I'm doing, whether it's work or making art. It's surreal to think back to March 4, 2013 and try to remember what it felt like. I was in shock at that time to some extent, and may not have really been able to process what was happening or what it meant to me. I still feel that way to some extent, although I know that going through cancer treatment and the exercise of acknowledging my mortality has heightened my awareness of what makes life meaningful for me. I am much closer to embracing my artist-self and I'd like to say that I don't waste much time. I still have things that aren't worth worrying about but I do it anyways.
Every once in a while, I get to laugh really hard, and I'm reminded of how carefree I once was. I take things pretty seriously these days, and I'd like to play more. Making art feels like play to me, but it's a fairly solitary exercise. It's been really nourishing to play percussion with the Kalamazoo Philharmonia. I get to listen to live classical music once a week and play delicate passages on the glockenspiel or go to town on a gong. I'm so grateful that my parents sent me to piano lessons and encouraged me to participate in band throughout my public education. Music has been a great tool to help me cope and heal.
On February 21, Mark was matched for his pre-doctoral internship at the University of California, Berkeley. After he defends his dissertation this June/July, the internship will be the last requirement between him and a Ph.D. in Counseling Psychology. I am so impressed that he matched at his first choice of sites, and not too surprised that he was a competitive candidate. He's a smart dude who is very grounded, extremely compassionate, and open-minded. He will move to the Bay Area by August 4 when his internship starts, and I will stay in Kalamazoo through December to finish my BFA in print media here at WMU. I will continue working in my current position as long as I can, both to support the work that we're doing there, and to help us pay for Mark's accomodations in California. I have been pondering the terms "home" and "family" recently as those are both words and concepts that come up when we talk about going back to California. Kalamazoo feels like home, and I have a family here of people that I love and will miss. Most of my emerging adulthood has unfolded outside of California, so I look forward to learning how my friends from high school and college have grown, too. It will be very nice to be able to see our biological family more often and without the time and resource depletion of cross-country travel. There will be opportunities to practice art, music, and community building wherever we go.
I suppose it would be helpful to include my current health status, since the last time I wrote was when I was getting my port removed. That day was pretty easy, the only downside was that they didn't let me keep my port after it was removed. I considered just stealing it, but I didn't want someone to get in trouble for not following their hazardous waste disposal protocol. After the procedure, I went to use the restroom at the hospital and my period had arrived. I was so excited because my primary care physician had told me based on my hormone levels in November that it was unlikely I would resume having them. I've since had two more periods on a fairly regular schedule. When we went to the U of M Reproductive Medicine Clinic in late December, they recommended assessing my "ovarian reserve" (by monitoring hormones such as estradiol, FSH, and AMH) to see if I'm a candidate for fresh IVF, as they call it. We got preliminary results in Jan that showed that my estrogen levels are rebounding since November, but the AMH is such that I'm currently not a candidate for successful IVF. Using our frozen embryos will be "easy" according to the doctor, but she recommended that we keep it as our backup plan since we could lose some of them in the thawing process. I think I'll get bloodwork done again in April to see what the trend is, particularly with the AMH. After having a post-treatment PET scan that made it seem like I still had cancer, and having a doctor tell me that it was unlikely that my period would come back, I'm taking it with a handful of salt that I might not be a good candidate for fresh IVF. We'll see what happens!
To wrap it up, I am very grateful to be alive today to reflect on what was happening a year ago. I wasn't entirely sure that I'd still be around at this point. And as unpleasant as it is to think about, I don't know if I'll be here a year from today. But that's not something that can be known until it happens. In the meantime, I'll just have to make the best of the time that I have. Thanks for your support, and may you be well.
Love,
Erica
