Cancer
On February 18, 2016, I was diagnosed with colorectal cancer. I'm one of a growing demographic of younger folks being diagnosed with this type of cancer. For all intents and purposes, I'm not the kind of person who is supposed to get this - I'm a longtime vegetarian, everyday bicyclist, and generally a "fit and healthy" person. This kind of cancer comes with high rates of depression due to the way it changes the body. These are some snippets of my story, but I'm happy to talk to anyone who is going through this and has questions.
Figuring out I was sick - December 31, 2015
My body has decided it hates me over the past couple of weeks, so I spent the day getting poked and prodded and CT scanned. Looking forward to kicking 2015 to the curb, and embracing a healthier and happier me in 2016.
Diagnosis - February 24, 2016
I'm just putting this out on social media because it's going to dominate my life for the next few months, and I don't really want to talk about it much more. I was diagnosed with cancer six days ago, and life has been a whirlwind of appointments and poking and prodding since then. I have a terrific medical team, and they've already constructed a treatment plan that will begin in about a week and a half - a combination of radiation and chemotherapy for a period of time, followed by surgery, then more chemo. (Not the kind of chemo that will make me lose my hair). I have incredible support from family and a few close friends, and I have full confidence that I'll get through everything just fine. What I would love from people in my life: 1) please don't cry on me - I'm not dying, I'll be fine. 2) don't ask me to talk about it - I'm really tired of talking about it, and the people who need to know are up-to-date on it (doctors, close friends and family). 3) don't take it personally if I don't pick up the phone or return messages - I'm super drained, emotionally and physically. 4) be understanding when I pull back from several of my obligations. I appreciate everyone who already knows and has reached out with words of support - they do mean a whole lot to me, and I love you all!
I am the Bionic Woman!
(March 1, 2016, Day of Port Installation)Â
*I must admit that I'd never heard of the port before I had mine installed. Here is how the interwebs describe it: "A port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin. A soft thin tube called a catheter connects the port to a large vein. Your chemotherapy medicines are given through a special needle that fits right into the port. You also can have blood drawn through the port." So weird!
Last Bike Ride - March 4, 2016
I went for my last Friday donut ride for awhile this morning since my radiation treatment starts on Monday and I'll be doing that every morning, five days a week. Korina reminded me on the ride of how much I've done before my diagnosis - like that I rode my bike 120 miles to Tucson with a body full of cancer! Imagine all the things I'll be able to do once I'm done with this!
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*I rode my first century, 120 miles from Phoenix to Tucson, three weeks before my diagnosis. I'm pretty proud of that!
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The chemotherapy and the Creamotherapy - March 8, 2016
*I have a whole pile of cats, and my three cream-colored boys became known throughout my treatment as my "creamotherapy." This is Waylon
Support - March 9, 2016
I gave my chemo doctor permission to pass my information along to someone who has gone through my treatment for my same cancer, and I just got a call from a really lovely lady who went through all of this with the same doctors I have. It's really cathartic to talk to someone who can relate about all of the weird stuff that happens with this process, and to have an idea of what I might expect. I'm now 24 hours into my chemo treatment and a couple of sessions of radiation in. In my case, I feel like the emotional preparation for treatment was tougher than the treatment itself - I'm not gonna lie, the port in my chest still weirds me out, and the idea of a needle going into that was even weirder. The hardest aspects include: bathing and dressing myself while attached to a bunch of tubing and the chemo device, keeping Sidney from pouncing on the chemo tubing, and driving from Biltmore back to Central Phoenix during rush hour traffic. I do now expect that I may start feeling the fatigue big time in about three weeks, and that might stick with me fairly long term. Overall, I'm feeling pretty ready to take this on, and so grateful for all of the wonderful people at the oncology practice who are both strong and compassionate - I'm going to get through this just fine.
*Creamotherapy image of Waylon designed by my amazing friend, Ryan Hale, and t-shirts printed and sent by Bay Area pal Jessica Mirmak. The cat people in my life are amazing, and it was incredible to get photos from around the country of pals wearing Waylon's face!
Halfway Point for Treatment - March 25, 2016
Today marks the halfway point for radiation/chemo treatments! (Surgery and more chemo to come). I am simultaneously relieved and grossed out that my insurance has paid out approximately $80,000 in the past 90 days. It shouldn't be this way.
Chemo Boogers and All the Feels - March 31, 2016
Cancer update: I'm pretty proud of being able to take care of myself, driving myself to appointments, keeping it mostly together most of the time. The past few days, I feel like I'm starting to experience chemo brain. Yesterday, I was driving to radiation and fantasizing about becoming ordained and performing a wedding for a friend who is finally in the relationship she deserves, and I missed my exit...just completely drove right past. And last night, I decided to google "chemo boogers" (don't ask), found a really useful blog post, but then discovered that the lady who kept the blog actually died and I fell apart. Today, I just feel like I have cotton candy in my brain.
Jimmie Buchanan - April 4, 2016
The past couple of months have reminded me not only of the kindness of friends, but also the kindness of strangers. I met Monica through my secret cat group, and she quickly became one of my favorites when she shared a video of her family playing bluegrass music (which was part of my growing up). She sent me the most incredible care package last week filled with kitty treasures, which I failed to take photos of and immediately started using! (Look for new cat shirts soon!) She also mentioned that her dad was going through cancer treatment, so I wrote him a card. Today, I opened up my mailbox to find this beautiful drawing and a cd of his music. Today has been the hardest day so far of treatment, and I'm not sure how the universe knew that I needed this. I can't wait to be all better in time for Archives Leadership Institute so I can meet them in person in Kentucky!
Radiation & Menopause - April 5, 2016
A couple of people have asked about my treatment. I go to radiation five mornings a week, and am on constant chemo, and Tuesdays are my busy days for getting new chemo, having labs done, and meeting with all the doctors...plus plenty of time for reading. This is the device that I lay in that administers radiation. I have an hour to kill, so I go two blocks away to Whole Foods for a treat yo'self juice and muffin and yogurt. This week, the treatment is hitting hard. Possibly tmi, but it's basically sending me into menopause, physically and emotionally. So bear with me if I start to cry over nothing.
April 6, 2016 - When I was lying on the radiation table having my insides fried, I couldn't help but chuckle at the irony when the '80s song "Beds are Burning" came on the radio.
Celebrating the end of radiation and chemo with some creamotherapy and a slice of Waylon - April 19, 2016
Appointments - May 5, 2016
Cancer update: I spent the day at appointments with my surgeon and medical oncologist, and I responded really well to my treatments and have scheduled surgery for July 1. Following that, I'll wait a month and a half or two, then do approximately 6 months of chemo. Clover and I marveled at how similar cancer is to a kitchen remodel - the timeline is never accurate, it's obscenely expensive, and something always goes awry with the plumbing.In case my toughness was ever in doubt...I'm not sure if my surgeon was more impressed or horrified when he asked me, "you rode your bike while getting abdominal radiation and chemo?!" I was pretty excited because I think it's the first time I've seen much emotion out of him!
The Vaginal Dilator - May 11, 2016
Some aspects of my treatment, I prefer to keep private. Others are maybe so hilarious that I want to share, but also sometimes culturally taboo subjects. Fortunately, cancer is good practice at letting go of uptight standards and allowing that Leo pride to come down a few notches. With that, here is my TMI cancer update (sorry mom!): I received this instrument today from my radiation oncologist, and his nurse said "you can use this, or you may prefer the battery operated one or the real live one." How is this my life?! Hahaha!
Lessons - May 29, 2016
Things I wish I didn't have to learn from cancer (which you may also find in most commercially available inspirational calendars): learn to say yes to things that scare me, and to say no to things I perceive as obligations but that sap my energy and joy. Learn to love my body, saddlebags and all, and remember that this is the body that pedaled 120 miles to tucson with cancer and it will be the body that beats cancer. Stop questioning whether I deserve all the wonderful support from my communities, and instead recognize that I helped build these communities and will show up for them in the same ways if and when the time comes. Stop letting fear and guilt have so much control. Learn to communicate my needs without fear or guilt. Understand that I have more control of my narrative than I realized. Hug my sister more and help her to understand exactly how amazing she is and I couldn't have done this without her. Stop wasting time and do something big and awesome - treat yo'self! With that, I'm gonna check out for the next week and see where these lessons take me! I'll let you know how it goes when I get back!
Iceland - June 3, 2016
Leaving Reykjavik with a full heart and lots of courage for the next month of scariness. Still processing this week, but for now, thanks to Clover and Jen for the dear times, the endless coffee and long walks and belly laughs and daylight and love this week. Coming back a changed person and ready to face this next chapter.
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My Grandmother's Archives - June 5, 2016
One of the things I've treasured most since I've been sick is that my mom has been sending me family photos. When I arrived home from Iceland, I opened up this wonderful packet of images of her Danish family, who moved from Denmark to California to help found a little town called Solvang. When she comes to see me in a few weeks, she will bring my grandmother's diary of her own trip to Denmark in 1939 - apparently she stopped keeping entries on the ship over, probably similar to me shutting my phone off when I got to Iceland and not taking a single photo! I love that she also included this image of her mother years later at the Grand Canyon – especially since Clover just arrived there today and is preparing to hike rim to rim. Iceland strengthened my resolve to leave North America more, and I look forward to visiting Denmark when I kick cancer.
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The Emperor of All Maladies - June 11, 2016
Nearing the end of this incredible book, which has been oddly comforting to me as I face surgery and chemo. I can't always understand science, but history, I get. My mom and my sister have been reading this alongside me, and my mom confessed that she had to put it down because it made her too sad. But pushing past the early experiments with surgery and chemo, I think it provides a picture of how far oncology has come - in treatment, in providing comfort through the process, and in the important role of early detection. I see why it would make my mom sad - some of the harshest periods of oncology happened when her father passed away from cancer in the late 1970s, and again when her mother passed away from it in the mid-1980s. I know I don't have an easy road ahead, but am grateful for the advances.
Orlando, Menopause, and a Red-Eye to Kentucky - June 19, 2016
Okay, I've got to be real here - life feels so hard this week. I have so many complex feelings about Orlando and am looking for the most effective way to respond, but at the root of it, I am grieving so hard. This is undoubtedly in no small part due to the hormonal swings brought on by medically-induced menopause, and the anxiety of surgery next week that makes me seemingly unable to sleep longer than a couple of hours at a time. I went to the airport last night at 11 pm for a red eye to Kentucky for Archives Leadership Institute and a week of professional and personal nourishment, but instead spent the night waiting, being herded on and off of planes, and finally had to book a different flight that left at 645 and is routed through Dallas, my current location, which feels like the most awful place on earth. For once, I am so grateful for the 7 hour time difference from Iceland, which has enabled me to talk to my dear sweet Jen, who been available at 3 am and 5 am phoenix time, and has helped me laugh in spite of all this. I am also grateful for the text message that despite getting into Lexington hours after the last shuttle, an archivist that I've admired through the years will be waiting for me to drive me the last leg of the journey. Here's hoping my suitcase makes it there, too!
Archives Leadership Institute, Berea, Kentucky - June 27, 2016
Back in the heat of the desert, I keep thinking, "did I really just travel to the hills of Appalachia, learn to make brooms, and hang out with bell hooks?!" Fortunately, we are archivists and documented our time! I will forever be grateful to this amazing group for a completely restorative week reminding me of why I love the archives field - we are blessed with the work we do, and we are blessed with the community we have created. Thank you to everyone who was a part of #ALI16 for creating such a perfect circle of love and support during an incredibly difficult time. I feel sad that I'll have to put this professional excitement on ice for a little while until I am done having cancer, but really glad that you'll all be waiting on the other side!
Surgery, Day 1 - July 1, 2016
Out of surgery and resting. Dr. Kim said he'd never seen someone respond so well to the radiation! Surgery went well. Just gonna let the meds do their thing now. Goodnight!
The view from here. Also, I keep thinking the weird devices around my legs are a purring Waylon. Thanks morphine.
Surgery, Day 2 - July 2, 2016
Good morning! Just saw Dr. Kim (have gotten so many notes from people confirming he is just the best!) and he was the most positive I've seen him! He said if he hadn't known the tumor before, he would have been hard pressed to know because the radiation was so effective. This could mean shortened chemo in the next round! Also, he said I have the best room in the ward, so somebody must like me! Haha. Best news today is that I get to have coffee!
Surgery Follow-ups - July 25, 2016
Cancer update: I had an appointment with my surgeon today, and all is healing up really well. Several people have asked me what stage I was, and it turns out I was at a stage 2 before chemo and radiation - as I mentioned, I now have no trace of cancer. Some people have also asked why I still need chemo even after my surgery and having no trace - this is to prevent cancer from spreading to other parts of my body. The book "The Emperor of All Maladies: A Biography of Cancer" gives a pretty good rundown of why post-surgery chemo is important and metastatic cancer is the devil.
Starting Chemo...again - August 10, 2016
Cancer update: I had an appointment yesterday with my medical oncologist to get a sense of what to expect from my final months of chemo, which begin in two weeks and end at the tail end of November. Expecting: fatigue, possible nausea and loss of appetite, chemo brain, cold sensitivity. What not to expect: hair loss (fingers crossed!) Another exciting bit of news is that I won't necessarily have to take Neulasta (this nasty bone-pain causing stuff to help with white blood cells) unless absolutely necessary. I did finally talk to her about how the depression post-surgery has been difficult, and she wrote a script for a low-dosage medication that apparently helps with depression AND hot flashes! I've tried to avoid most of the buffet of pills offered to me since my diagnosis, but am hoping this one helps.
Chemo - August 2016
August 23: Made it through my first infusion of chemotherapy and am back home enjoying the much preferable Creamotherapy.
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August 25: This round of chemo has pretty much knocked me on my ass since Thursday night, but the Creamotherapy sure is nice!
August 29: Chemo update: after days of feeling nauseous, I finally threw up last night and feel immensely better today! Some larger issues that concern me: I am not interested in drinking coffee, chocolate tastes like metal to me, and I am listening to Enya.
Back in the Saddle - September 5, 2016
Two and a half months since I've been on a bike, so this felt monumental and magical! I am bracing for another rough treatment tomorrow, but it's nice to know that I can start to feel human again every other week!
Zella - September 23, 2016
Thirty-one years ago today, my grandmother, Zella, passed away from cancer. I'm so grateful for the medical advances made during that time that have spared me some of the rough stuff she had to contend with. I'm also grateful for her fabulous spirit, her sense of humor, and her fashion - I've tried to embody the best things about her through my own treatment.
Cats and Cancer - September 26, 2016
Jen shot a little film of me talking about cats and cancer, and my favorite part was the discovery that I could hear Waylon's motor roaring through the headphones! #creamotherapy
Rainy Monday. Second to last chemo, hopefully ever - November 21, 2-16
Early Detection Saves Lives - December 7, 2016
It's been a year since I knew something was wrong with my body. When you start digging into the black hole that is WebMD, it feels like everything leads to cancer, which I was sure I DIDN'T have. (I was convinced it was an ulcer or colitis). I do not fit the profile of someone who gets colon cancer - too young, longtime vegetarian/vegan, and generally active and healthy. I learned from my surgeon that there's been a significant spike in cases like mine. It's hard not to respond to a diagnosis like this without feeling like it's somehow my fault, but I do feel like there may be environmental factors at play (in addition to the fact that I have significant family history). It's also hard sometimes talking about my cancer because it's not a sexy cancer with races and slogans and trademarked colors that create a lot of buzz about it - and consequently, there is less of a community built around it. If you have any family history and are experiencing any symptoms, please please please go get it checked out. Early detection saves lives - I'm proof!
You were wrong when you said everything's gonna be alright - December 14, 2016
Cancer update: on transitioning from patient to survivor - I thought finishing chemo would feel joyous, but it turns out that it's really hard. I spent so long treating my treatment like a job that I had to power through, and so much emotional labor telling everyone else (and myself) that I was fine when I maybe wasn't. Yesterday in a puddle of tears, I broke down with my therapist and admitted I'm pretty angry. I'm angry that I got cancer. I'm mad that my body and my mind and my heart got hijacked for the year, and I'll never go back to the way I was. I'm angry that I've spent the past few months spending alternating weeks going in and out of a fog, trying so hard to accomplish everything I could during good weeks. And mostly I feel a little like "what do I do now, with this unfamiliar body and raging menopausal hormones?" Even though I have the most amazing support community, it still feels like something I've been trucking through alone. I've isolated sometimes, mainly because it was hard to see the sadness in the faces of people I love, hard to relive what I'm going through by talking about it. Mainly, I hate that 2016 has beaten so much of the optimism out of me.
Confessions - January 13, 2017
Let's talk for a minute about pre-existing conditions, which means I'll be sharing some pretty tough body image issues here. My treatment last year has added up to about half a million dollars, and I'm saddled with having to wear an Ostomy bag for the rest of my life. I jokingly tell the people close to me "I hate assholes so much that I got rid of mine in July." The reality is that, in the immediate, I am working through a lot of body shame issues, but in the long run, I'm always going to rely on insurance. Should I find myself unemployed, I would need to find a way to pay the close to $1000 a month my body needs just to function properly. It took a lot to share this today, I've been wanting to share it for awhile, and now that medical care is under the gun, it felt really important. Our system is deeply flawed, but we need to find ways to provide people with medical care that won't bankrupt them. Dealing with stuff like cancer or Ostomy bags is hard enough - let's find ways to ease the other stress.
Here for my SURVIVORSHIP appointment, hell yes!
New Beginnings - March 29, 2017
Arizona has been so very good to me - I've had the chance to grow as an archivist, a bicyclist, and a cat lady. But the last year has been hard, and I'm ready to move on to new adventures. I've accepted a position at a small private liberal arts university in North Carolina called Elon, and will begins June 1. I get to work with one of my very favorite archivists there, and have an incredible network of friends and colleagues in the state. I'm looking forward to seasons, to buying a little place all my own, and especially to being in a supportive and intellectually curious work environment. Lots of love to all of my Arizona friends, and please come visit!
