Face Everything and Recover

Wow, it's been a LONG time since I added to this blog. I looked back at the last entry and realize I may have left some readers hanging. I've been busy and not really wanting to think about cancer and what I've been through over the last two years. I'm so grateful to be cancer free (as far as I know) and living in a body that enables me to do almost anything I want. The only physical reminders I have of the experience are the scar on my neck, my curly hair, some photos, and the fact that I don't have any children yet. So in reference to my last post, I can share that the IVF cycle was not effective. I started the injections and within 5 days the doctors recommended that we stop. When we did an embryo retrieval before I went through chemo, my estrogen levels rocketed from 72 to 330 to 1300 during that 5 day period. This time it went from 5 to 12 at the maximum dose of stimulating hormones. It was a very sad discovery, but I coped with it by reminding myself that if it had worked it would've just been a bonus. It was worth a shot... pun intended. The good news is that I've continued to have regular periods since then so I'm not giving up hope that we'll be able to at the very least use our frozen embryos. Once I get through the next transition (see below), we'll see what strategies are available for us in California.

As I may have written previously, I've been taking self-portraits, with the help of photographer Dan Morgner, since my diagnosis. Next week I will install an art exhibition of some of those photos and some prints that I made during the same time period. Here's the postcard that I designed for the show:

When I take that exhibition down, I will set up my Senior BFA exhibition. Then I will graduate, wrap up my job, pack up the house, and move back to California. It has been and will continue to be a wild ride. I'm so grateful for the time I've had in Kalamazoo. What an amazing place filled with great people!

Wellness improving

On Monday, Mark and I made the 1:40 drive to Ann Arbor for a visit to the U of M Reproductive Health Clinic. I was only expecting to hear that my ovarian reserve is depleted and that they weren't willing to re-order bloodwork that was done in January that indicated my AMH level was low enough to be a poor candidate for fresh IVF. Instead, we left the office with plans to start an IVF cycle in June. The doctor reauthorized the bloodwork and said that the numbers aren't the only indicator of my ovarian reserve. She said that we'd get more information from stimulating my ovaries with hormones and seeing if/how they develop follicles. So our plan was to wait another 10 days or so for my menstrual cycle to reset, then I would start taking birth control pills to create a clean slate for the next cycle. The next day, my period started, as if my body is saying "LET'S DO THIS!!" If you refer back to a blog post from December when my port was removed, you'll see that my body has been pretty responsive in telling me what it's ready for.

So here are some of the possible outcomes from our upcoming experiment:
Option 1: Follicle stimulation is incredibly successful, we transfer 1-2 fertilized embryos and I get pregnant, and if there are extras we freeze them for future use.
Option 2: Follicle stimulation goes well enough, we get one embryo and hope that it works.
Option 3: Follicle stimulation indicates that my ovarian reserve is depleted and we skip the retrieval and thaw/transfer some embryos we "put up" last spring. I get pregnant anyways!
Option 4: Follicle stimulation doesn't work, and we decide to wait to get pregnant until we've had a chance to process this experiment.

There are certainly other scenarios that may play out, but it's good to have options! It didn't take me long during the doctor's visit to adjust from what I was expecting to hear to what we were actually hearing. At first I was scared, but then I opened my heart and it felt like the right time to just go for it. There will never be the perfect time to try to get pregnant. On this timeline I would be just entering my third trimester when I graduate and then I'll be able to join Mark in California.

Earlier that same day, we dropped off my print at the Ann Arbor Art Center. On Friday, we went back to Ann Arbor for the Artist Reception and found out that out of 28 prints, mine had won 3rd prize! We have been advised by our healer friend Jorge to focus on the number three, so Mark pointed out that the third place award was significant. The print will be on display for a month or so, and I'm hoping that someone will buy it. I've already sold two prints from that edition of seven, and I gave one to the student print archive at WMU.

Today I ran a 5K at Lake Village Homestead Farm. It was cold at first, but I warmed up during the run. I reflected on the powerful fact that I would not have been able to sustain a run for that long a year ago. I remember my heart pounding just from walking up a slight hill in our neighborhood last spring. It was certainly a challenge this morning because I have not been running, but the setting was beautiful and I just focused on my breath. I'm happy to be sitting here with a warm cat on my lap right now, and will lay low for the rest of the day.

May you be well!

Year after Chemo #4

A year ago today I was going in for my fourth treatment of R-CHOP. I'm so grateful to have some distance from the entire experience- I forgot to note the passing of the year-after mark of treatments 2 and 3. It's such a gift to not have to think about it, yet most of the time if I slow down it catches up with me pretty quickly. Yesterday was the first day since last fall that was warm enough to sit outside in a short-sleeved shirt and be comfortable. There were peepers (Michigan tree frogs) chirping away as dusk settled in, and I was reminded of all of the sounds of summer that are coming our way. We'll get to open our windows and our hearts now that the air is warming again. I've been going to a Yin yoga class with a friend for a few months where we're learning to slow down and "undo" by stretching our connective tissues with gentle reclined poses held for long periods of time. It's a nice addition to the more active or Yang yoga I've been exposed to in the past.

This week, I signed up for some shared studio space in the Park Trades Center here in Kalamazoo so that I'll make some art this summer instead of leaving all my gear in the closet where it won't get messed up by the cats or a wet basement. I'm enjoying my new website (www.ericabarajas.com) and have had one of my prints purchased and accepted into a few exhibitions outside of Kalamazoo. It's nice to have the validation and to have people connect with my work. I don't want to get too attached to that validation, but it's nice to have some for sure.

Mark has been analyzing statistics and will likely defend his dissertation in June. He's moving out to the Bay Area in July sometime, and I'll drive out there with him and fly back. I'm not graduating from WMU until December, so we'll do the long distance thing for a little while and then I hope to join him out there. I applied for a printmaking fellowship at Kala Art Institute in Berkeley, which would give me free studio access and a nice stipend for a few months. I will probably have to find a "Day Job" soon after moving there but it would be great to have a little buffer and some free time in the studio to celebrate my graduation and treat myself after all the hard work I've done in Michigan. It will be sad to leave behind all the good things about Kalamazoo (there are so many!), and I will miss the inspiring people I've met (also so many of them!). Luckily I have the rest of the year to spend here so I can soak it up and be able to say goodbye before I leave.

I'm going to Ann Arbor on Monday to see the doctor at the U of M Reproductive Medicine Clinic. In January, I had my hormone levels checked by them to determine the state of my "ovarian reserve." Based mainly on the measure of AMH on Day 3 of my cycle, they determined that my success rate of doing fresh IVF would be less than 5% (this also means I would be highly unlikely to conceive naturally). I feel pretty skeptical about that claim, partially because I don't want it to be true, but also because I have had two experiences with lab results being interpreted definitively (at the time) by medical staff where it wasn't as definitive as they thought. Each person's body reacts differently to treatment. I was told after my first post-chemo PET scan that the cancer wasn't gone yet. Three months later, my scan was clear. When I had my estradiol and FSH levels tested in late 2013, my primary care physician said it was highly unlikely that my period would return and that I was in menopause. Since then I've had five normal periods in a row on my old schedule. So while I don't want to be stubborn, I also don't want to rely of one set of data to decide something about my future. I suspect that doctors are under a lot of pressure from their clinics and insurance providers to only order medically necessary tests, but it does set up a power dynamic where I'm not allowed to know my hormone levels unless I've been given permission by a doctor. I don't think I can just walk into a lab and get them to draw blood and test it. One thing makes me feel a little better about having to go to Ann Arbor... I was accepted into a print exhibition at the Ann Arbor Art Center, and it just happens that the day to drop off my work there is the same day I already had an appointment to go to U of M. Thanks for the synchronicity!

Birthday

I just got caught up on my schoolwork after being behind for an entire year. Yes, it's 4am, hopefully my last pseudo all-nighter for the year. It feels good to be done, although I really dragged my feet when it came down to the last few assignments. I realized that I was afraid to move on because I know that it means I'll have more time on my hands. When I'm less busy, thoughts and feelings surface that I've been keeping at bay. Now is the time for me to approach those things with love and courage, to give myself the space to deal with them. I got transplants for my vegetable garden this weekend and spent some time in the sunshine preparing the beds and irrigation. It was great to get my hands dirty and feel the satisfaction of a sore back after some (minimal) manual labor. I also cleared out my studio at school (two pickup truck loads of art gear!) and am looking forward to a shift in pace for the summer.

If you are interested in seeing what I'm doing in school these days, feel free to visit my artist website at www.ericabarajas.com. I drank some green tea to get myself through the last two papers I was writing and now I'm a little too wired to go to sleep even though it's been a long day.

I'm so grateful for the friends I've met here in Kalamazoo since we moved here in 2009. We had a lovely gathering today to celebrate my 35-and-still-alive birthday. Everyone brought something to share and it was warm enough to be out in the backyard. There were children and dogs and all sorts of diverse conversations going on. Mark made an amazing Devil's Food Cake from scratch and we grilled burgers, veggie kabobs, and polenta. There is so much beauty in the world if I look for it, and I'm lucky to be surrounded by so much of it. There is also a lot of suffering in the world, and I can face that with courage and love as well.

Responsibility

On the eve of my 35th birthday I'm feeling pangs of regret that I don't have children. Yet, I hope. My birthday last year was overshadowed by chemotherapy and the end of a semester that felt like a failure. I took three incompletes, which was a concession for me to admit that I couldn't proceed as normal with my plans. I'm now dealing with the consequences of those incompletes... 2 print projects and 3 essays piled on top of my normal end-of-semester workload. It has become clear to me that my number one coping mechanism is to get busy and stay busy. Sometimes I don't take responsibility for co-creating the situations I get into and I feel like it's something "happening to me." Last week someone asked me where I get the energy to do all the things that I'm doing (this person is a single parent) and I told them that it was because I wasn't responsible for anyone else but myself. (As if being connected to other people would automatically drain one's energy). As soon as I heard the words come out of my mouth, it didn't feel right. Sometimes it takes saying things like that out loud for me to process them. It didn't feel right in a few different ways.

• One thing was that I do feel some responsibility for others... to make sure people I supervise at work have what they need to do their jobs well (including funding), to be a good enough wife, daughter, friend, for others in my life. 
• It also felt strange to admit that I'm the only one who can truly be responsible for myself and to notice that I might not be doing that so well. I'm so focused on getting things done and staying busy that my wellness has slipped down the list of my priorities. I was reminded that I need to get enough sleep so that my body can continue recovering and can resist future mutations. These reminders came in the form of a loving intervention from my husband and a simple magazine headline at the food co-op: "Sleep to prevent cancer." This semester I've done a few all-nighters to finish print projects because it felt like the only way to get it done. I hope I didn't do too much damage by way of those choices. 
• The last thing that didn't feel right about my statement was that I typically gain energy when I'm around people. I think if I was around a daughter as awesome as my friend's 9-year old all the time I would be full of love and excitement about life. (I'll have to come back and remind myself about this when/if I'm up in the middle of the night taking care of a sick kid someday).

One thing I've done pretty well this semester is making sure that I have plenty of healthy meals and snacks around. I could always drink more water, but have avoided caffeine for the most part. I'm really looking forward to the growing season and all the farmers' markets that happen. This will be my first season since 2010 that I wasn't in charge of a market, so I'll be able to visit just as a customer.

I had a dream last night that there was a gnarly sapling growing in my bed, through my mattress, that made it impossible for me to lie down. It looked like this unwanted tree that I've cut back a bunch of times to try and remove it from the school garden I used to manage. In the dream, I realized that I needed to take it out by the roots to really get rid of it... that cutting the branches off of it wouldn't do the trick. So I took hold and pulled and it eventually came loose, leaving behind a bunch of dirt in the bed. I'm not sure exactly what that part of the dream was about, but I suspect it has something to do with getting rid of bad habits (of mind and/or body) for good.

With classes wrapping up last week, I have 7 days to complete 5 projects and 3 essays. I'm going to be gentle with myself about the quality of those assignments, and will focus on drinking enough water and getting a full night's sleep. Luckily, things are going pretty smoothly at work so I'm not very stressed about that part of my life.

I'm looking forward to an internship that I'm doing this summer at the Kalamazoo Book Arts Center. I'll learn how to make paper, bind books, and do letterpress printing. I'll also earn access to the entire center 24/7 so I'll have a place to do my own work over the summer. I applied for some funding through WMU to defray the cost of summer tuition for this independent study. I might convert one of our bedrooms into a home studio when Mark moves to California in July, so in the meantime I just need to store my work and supplies somewhere safe since we have to clear out of the art building on April 28.

Death is coming for us all. Sooner or later. It's something we all have in common. I'm reminded each time I here about someone close to me or close to someone I know getting cancer, committing suicide, or having their livelihood challenged. It's difficult to keep this in mind when I have a list of things to get done and I don't make time to think about whether or not those tasks really matter in the long run.

As the earth wakes from it's wintry slumber, I'm reminded of a lyric from Elisabeth Pixley-Fink's song:

"When the spring comes, may all that you planted rise up and greet the sun."

May we all plant the seeds that we want to see growing in our lives and in the world.
May we honor that which surfaces and face it with love and without fear.

Reflections on First Chemo Treatment- One Year Ago

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