Reflections on 2019 and cancer and love

On January 14, 2019, I was diagnosed with cancer.

I still haven't found an easy way to say that, but I am finding it easier to talk about it. Really, the people around me make it easy.

From the colleague who found out about my fingernail issue and left a bottle of strengthening stuff on my desk.

My college roommate who shows up and sends meals and care packages and button up pajamas to wear after surgery and books for Tim and Esther-Faith to read in waiting rooms. And love.

And my colleague and friend who stood in the kitchenette at work after I ran out of a meeting when my nose started to bleed uncontrollably, wrapped her arms around me from behind (so my nose could literally gush into the trash can), and whispered, "You've got this." Over and over. Until I believed. Maybe until we both believed it.

And my friend who drove me home from those first six--really brutal--cycles of chemo. And even drove me home after the sixth one when I had a pretty severe allergic reaction to one of the chemo drugs. He had planned to take me for a beer; instead he drove me to a brewery and bought me a some beers to have when I could.

And the people who sat in a circle in a tiny conference room listening to the oncology nurse describe what chemo was going to be like.

My sister- and brother-in-law who have stuffed my freezer (more than a few times) with healthy soups and breads. They just show up, take over my kitchen, make some soup, do some chores, and leave me feeling loved and fed--in more ways than one.

My sweet friend across the country who constantly and consistently feeds my soul with her words and photos of her mountains.

My mom who shows up to sit with me after surgery.

My daughter who reminds me to persevere. Because surviving is worth it. 

Many friends and friends-of-friends who send mail and gifts and cards and encouragement.

My son and daughter-in-law who sacrifice and show up to take care of me and my house and my daughter. They let me sleep when I needed to sleep. Cooked, cleaned, laughed, loved. If you know anything about my son and what he's been through--and what we've been through alongside him--you know how special a gift this relationship is.

And Tim. My sweet Tim. He makes sure I'm never alone during chemo. Sometimes making it more like a party than chemo. Surrounding me with love and laughter while I'm connected to machines pumping poison into my body. Life-saving poison.

And Tim. My sweet Tim. He invited people to my last radiation treatment. Radiation was hard. I cried every day. Through every treatment. These amazing people lined the exit from the radiation suite and cheered when I walked out of that last treatment. They hugged me. Held me. Cried with me. Celebrated with me. Loved me.

My people who have showed up time and time and time again. In the mountains. At the hospital. Through surgery and pneumonia and chemo and radiation and nausea and fatigue and weird side effects and losing my hair and trying wigs and my scarf phase and letting me be different than the person they've known and sitting through chemo and helping me find bras that work and oil diffusers and buying me coffee at work and sitting next to my bed when I couldn't get out of it and holding space.

This year has been brutal, beautiful, hard, and gracious chaos. I have pushed myself to show up even when my body has other ideas. I have allowed myself to be and feel vulnerable. I found the people who I know will love me even if I complain. I'm not ever going to be that person who doesn't complain, but I promise I'm trying to do it with humor. When my cuticles bleed or radiation makes me panic or Tim makes me drink spinach or I go to bed at 6 p.m. or my fake boob shifts in my mastectomy bra or the days I hate my uniboob or menopause is wreaking havoc or I draw my eyebrows on crooked or cancer is cancer and the side effects of treatment make me misbehave, I PROMISE to try to laugh about it. I promise to try to make you laugh.

That is what I've learned this year.

Love. Laughter. Faith. Kindness. Persistence. Vulnerability.

I've learned that I like my hair short.

I've learned that really heavy eyeliner makes up for missing eyelashes.

Unless I cry. Nothing helps when my eyelashes aren't there to catch my tears.

I've learned that Tim loves me no matter what.

I've learned that having a uniboob is sometimes really funny.

I've learned that the mountains are good for my soul.

I've learned that people will SHOW UP. Big. Even if they are miles and hours away.

I've learned that I really am stronger than I thought I was.

I've learned that cancer is not a fair fight.

I've learned that cancer is not a gift, but it sure has taught me some things.

I've learned to plan for the unexpected.

I've learned that chemo is brutal.

I've learned I DO NOT like to be strapped down by my face.

I've learned to advocate for myself.

I've learned to be gentle.

I've learned to be a better manager.

I've learned that sometimes pickles are dinner.

I've learned I'm not the "make friends in the waiting area" kind of person.

I've learned to give grace. And accept grace.

I've learned the value of really good health insurance.

I've learned I don't need my breasts. (Or my ovaries.)

I've learned that cancer impacts more than me.

I've learned to push myself beyond what I think is possible.

I've learned that I will spend as much time in the kitchen as possible--even if I can't taste the food.

I've learned that Tim is a reluctant hero. And he also deals with hard things by using humor. And he is the best choice I have ever made in my life. He is an incredible human being. And he has filled my life with more incredible human beings. And he has flaws. And he loves my flaws. And he loves me.

For Christmas, Tim gave me tickets to see my favorite blues artist live in concert. She doesn't tour much--especially in the United States. But he found a way to get tickets. We missed some of our favorite artists/guitarists in 2019. We missed some Broadway shows. We missed a lot of church. We missed a lot of the normalcy of our life.

But Tim knows that I cried every single time I was strapped to the table for radiation treatment. 25 days in a row. He knows that every day they asked me what I wanted to listen to during treatment. And every day I said, "Beth Hart." Her music got me through those treatments. Her new album came out halfway through radiation. The day it came out, the oncology technicians had already downloaded it by the time I showed up for treatment. My first listen of these songs that I now love was strapped to a table crying, holding my breath, receiving treatment. There are a couple that make me cry still. Every time I hear them. "Thankful" and "I Need a Hero" and "War in my Mind."

Tim and I don't really have a "song," but if we did, it would be a blues song. Probably something by John Mayer or Joe Bonamassa or Beth Hart. When Tim proposed marriage, he was sitting in an apartment in Columbus, Ohio. I was on a shared phone in a rented room in London, England. He promised we would wear out the carpet dancing. We don't have carpet, but there are lots of times a song will come on, he will dim the lights, and we'll dance in the kitchen while dinner is on the stove. Sometimes we listen to the same song three times. And he holds me.

We have danced a lot this year. As we realize how fast time is moving, we ache to stop it. To slow it down. So we dance. In the dark. In the kitchen or the family room or the parlor. We cling to each other--both of us mentally pushing the "if I don't survive cancer" thoughts away. We force ourselves to talk about the future. To make plans. And we wear out the floors.

This year has been so difficult because of the side effect of treatment, but this year has been so beautiful because of the way we have been forced to think and love and plan differently, trust, have grace, receive help, and be thankful for everything in our lives. The sunshine. The moon. The lights on the Christmas trees. The birds in the feeder. The way Esther-Faith leans on us when she's tired. The way I sneak chocolate into my niece and nephew's pockets when they leave my house. Sitting around the table sharing a meal. Accessible schools. Dancing in the kitchen. Faith. Memories. The cancer center. Online church. Our home. Our jobs. The mountains. Our heroes. Family. Dreams. Hopes. Plans. Time. Laughter. Love.

I think though, mostly love.

© 2006-2020 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Chicago or bust

I just shoved three days worth of clothes and toiletries into Esther-Faith's super tiny, pink, hello kitty suitcase and zipped it shut. I checked in for my flight not quite 24 hours in advance via the app that has been on my phone for just under 24 hours. I've selected all of Esther-Faith's outfits for the week and matched ties with suits and shirts for Tim. The cat has food for three days. I've set reminders on my phone to remind Tim to let the dog back into the house. I've meal planned for the week. My work laptop is charged and I have a book to read on the plane. 

I'm about ready to travel for the first time with cancer as my only companion. 

I'm a nervous traveler. Well, nervous seems like a mild description. I love to travel with my family, and I love to plan travel. But alone? Not so much. Even without the added layer of traveling with a pharmacy in my purse. I have all of my prescriptions in their original bottles in case the ATF (or is it TSA) folks decide to dump my purse out and find out why there are medicines for managing any combination of cancer side effects. 

I was supposed to be four weeks out from chemo when I took this trip--not two. Two weeks out means I'm still dealing with painful diarrhea, extreme nausea, and debilitating fatigue. 

And tomorrow, I'm getting on an airplane. To Chicago. Away from my family and my home and my people and my doctors and the cancer center and everything familiar. My hotel is 1.5 miles from the conference. I have to navigate an unfamiliar city. Find food. Use UBER for the first time. And work. Attend sessions and meetings and learn and whatever. 

People do this, right? People with cancer work and travel and manage? I mean, I know they do. But can I? Can I do this? Really, I won't know the answer until tomorrow. Until I get on a plane and fly to Chicago for a conference I'm excited to attend. Excited to learn. Excited to think about the future of my job and my career and what we can do for students at Ohio State. And see Yo Yo Ma perform. And Gwen Stefani. And meet folks from other universities trying to do what we're trying to do. 

But cancer. 

I'm a nervous traveler, and now I have an added layer. Cancer. Sometimes I'm still in denial that I'm Stage 3 breast cancer with a grade 3 tumor. Friday I went to see my counselor, and Friday night I googled all of it again--desperate to understand what it all means for me. And for my family. I fell asleep with "grade 3 tumor, stage 3 cancer" in my search bar, but I never hit enter. 

I don't know if I really want to know what it all means. I want to go to Chicago and learn as much as I can about implementing Marketing Cloud at Ohio State and I don't want to think about cancer. I don't want to think about what is coming the rest of this summer. I want to think about finding a restaurant that serves shrimp and grits so I can memorize the flavors and recreate it at home. I want to think about missing Tim so much that whatever is going on between us melts away before I get home. I want to think about finding just the right souvenir for Esther-Faith. 

But cancer. 

When I get home from Chicago, the next big thing on my calendar is vacation followed not 100 hours later by surgery that will change me. Change who I am. Change my body and how I feel about myself. Forever. 

I don't think I'm required to like this situation, and despite all of the pleas from the people I love to "be positive" and "fight like hell" and "kick the shit out of cancer," I think what I'm doing is what I'm supposed to be doing. I'm doing everything my doctors and nutritionists and physical therapists and psychologists and pharmacists tell me to do. But to me, fighting is actually just surviving this. I'm scared I won't. So, I work on my cookbook at ridiculous hours while cinnamon rolls rise, and I read all the books I love alternately with books by cancer survivors (I call them all that--even if they died). 

A couple of weeks ago I got to see Keely play soccer. She scored three times and she won the sportswomanship of the game award. She got a free snack from the concession stand. Gavin begged her to share. 

After the match Michele walked me to my car. We talked. Mostly, I talked. She listened. Then I cried. Then she held me. There are things I can't tell Tim, and Michele holds that space for me. She lets me share with her the things I'm feeling and the confusion and anger and the books I'm reading. And she reads them, too. No matter how painful or uncomfortable, she reads the books so that she can relate to where I am mentally and emotionally. It's a gift really. To have someone like that in my life. There is really no way I think I will be able to repay her for that gift. 

When I land in Chicago, I imagine I'll text Tim that I arrived safe. Then I will figure this out. I will navigate travel and work and cancer all at the same time. I will obsessively text to make sure Esther-Faith and the pets are all fed and in the house at the right time. I'll ask for photos to make sure outfits are all arranged the right way. I'll text Tim twice to remind him to shave his face and to give Esther-Faith a vegetable for dinner. Esther-Faith has asked to cook while I'm gone. I'm both happy and nervous about that. At 13, I was cooking full meals. I have no doubt that she will be able to do it, but I won't know until after I land in Chicago and Esther-Faith and Tim manage without me. 

I guess I'm hoping they'll be just fine. Maybe I shouldn't text reminders. Because really, I don't know if I'm going to survive this cancer thing, and I need them to be able to manage without me. Maybe I'll send Michele a list of all the things that I'm not going to text to Tim and Esther-Faith. Maybe I'll just relax and worry about finding the best shrimp and grits in Chicago. Maybe I'll just work and conference and cancer and survive. I'll fly to Chicago for three days and I'll fly home. The rest is coming no matter what. I just need to figure out how to travel with cancer. I need to endure the next couple of days. I need to trust and love and survive and trust again. 

Could you all check on them for me? Make sure Tim's tie matches his suit and shirt? Make sure Esther-Faith has lunch and she sets the timer for her procedure? Make sure it isn't steak and potatoes every night? Make sure there are veggies? Make sure Tim doesn't forget that we have pets? And remind him that he likes the pets? Make sure they're okay while I'm gone? I'm planning and hoping to be here for years to come, but just in case, will you check on them for me? 

I'm going to Chicago by myself--with cancer as my only companion--for a couple of days. And I can't figure out if it is a test run or a metaphor or just a conference and all will be fine. Because cancer has changed me and changed how I think and how I relate and how I love. It has changed me. I am changed.

© 2006-2019 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Wigs and marking halfway

My wig fitting was originally scheduled for last Friday, but Tim called and moved the appointment up to Wednesday. I had physical therapy and an appointment with my surgeon (first surgery is scheduled, and no, I don't know how I feel about it), then I met with Amy, the best hairy godmother in the whole world.

I tried on long wigs and short wigs and purple wigs and black wigs and blonde wigs and red wigs. Eventually, I decided on a little-bit-longer-than shoulder length red wig. But there was this sassy short wig that I also loved. Insurance only pays for one.

As I was sitting in the chair in the private wig fitting area with nothing on my head, Tim stood up from where Amy sat him in the "quiet chair" (that's another story for another time that involves cosmetology and a story about a penis pump), he leaned over, and gently kissed my very bald head. We made eye contact in the mirror, and I knew in that moment that he loves me no matter what. He loves me as much, maybe more, as he did when he asked me to marry him. And when we said our vows. And when I typed his academy notes. And when we did hard things. And when he watched me become a mom--three times. When we celebrated 20 years of marriage. And when I was diagnosed with cancer. In that moment, I felt more love than any other time in my life.

We walked out with both wigs. I wore the sassy short one. Tim bought it for me because he said he loved how I can't stop smiling when I'm wearing it. And I can't stop smiling. I had no idea a wig could make such a big difference.

I haven't decided yet if I'm wearing a wig to chemo tomorrow or not. And it doesn't matter if I do or don't. Tim will be there, making the nurses laugh, paying really close attention to everything going on around us, taking notes when I'm making promises I'm not going to remember, and loving every moment he's with me. Even if it is at chemo.

Tomorrow will mark my third chemo infusion. At this time tomorrow, I will be exhausted, but I will be halfway through my first round of infusions. And three weeks later, I will be halfway through chemo. We'll probably get milkshakes halfway through the halfway chemo. We might make a nice dinner when we get home. Maybe I'll take both wigs and switch halfway through. Halfway feels like a milestone. But I know that I also have halfway to go. And that feels like a lot.

I'm so glad I'm marking all of the milestones with Tim by my side.

© 2006-2017 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

Smile lines and a grand adventure

When I met Tim Henn, he was 20 years old. He wasn't the first young man I met with a receding hair line, but he was the first I met with smile lines. He wore his jeans like Axl Rose--tight and full of rips and tears. His hair was longer, thicker, and really wavy. But just as blonde as it is now. And he already had smile lines around his eyes.

Tim is going to make the happiest, jolliest looking old man.

And I want to be around for it.

The other day I noticed that in addition to those smile lines, he's developed a few worry lines on his forehead and between his eyes. He's still got the smile lines, and a whole lot more of them, but what we've experienced through the years is also starting to show on his face. And I wouldn't change any of it. I would still choose this adventure with him as the pilot.

I say pilot because he is almost always the one driving when we go places, but I navigate. I make sure he always knows what the speed limit is, whether or not I think he's going the right way, which lane I think he should be in... You know. The REALLY important stuff.

We're co-pilots, though. So many of these adventures we've been on have been instigated by one of us, and decided upon by both of us. He encourages my hobbies--writing, quilting, cooking, baking. And I encourage his--photography, guitar playing, smoking of the foods. We like the same music. We like to experiment in the kitchen. We are both mountain people. We like the same vacations (mostly... I'm not big on open bodies of water, but I watch). We have nearly all the same goals. We are madly in love with each other.

And I want this to keep going. To keep having a grand adventure with some side adventures with my Tim.

Cancer is making me scared that this grand adventure is going to be cut short. And before you lecture me about "you're never promised tomorrow." Yeah, I know that. So does he. He has experienced lots of that in his career. But we're still planning to have a long, fun-filled, grand adventure.

I want to watch his smile lines get longer and deeper. And I want to be around when he turns into that jolliest of old men. Teaching the grandbabies how to turn things on the lathe. Reading them books as they fall asleep. Taking the same vacations. Discovering the same new blues artists. Going to concerts. Trying new foods. Hiking new trails. Watching our kids grow and learn and discover and find a co-pilot on their own grand adventure.

Today I hate cancer because I saw the smile lines on Tim's face that I've been seeing for almost 25 years, and it made me wonder how many I have left.

Today I hate cancer because I didn't see a single smile on his face to make those lines deeper. I saw worry as I laid down for a nap. And concern when I couldn't finish my lunch. And stress when we realized we have seven days until the next cycle starts.

Today I hate cancer. Today I want the promise of smile lines. And the promise of seeing my Tim turn into the happiest, jolliest old man.

© 2006-2019 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.

I have cancer

On January 14, I was diagnosed with breast cancer.

I wish there were an easier way to say that, but I haven't found it yet. The cancer hasn't been staged, although the tumor has been graded. For a while, I was calling it a "mass." But, it's a tumor. A big, fast-growing tumor.

I want to tell you I'm doing okay and that I've got the fight in me, but instead, I find myself lashing out at the people--mostly the PERSON--who means the most to me. Tim is a patient man, and I know he loves me. He loves me so much that he is putting up with my cancer anger by changing all the light bulbs in the house to LED and setting all the piles of stuff I'm obsessively purging in the garage in case I remember how much I love my books and t-shirts and shoes.

I am angry. I have plans--for retirement and a house in the mountains and quilts and to rock (eventual) grand babies to sleep. I was recently given a great opportunity at work to be in a team of REALLY smart and driven people that will completely change how we serve students at Ohio State. I want to serve on this team. I'm excited about the work and the people and the opportunities.

But cancer.

Both of the teams at work are amazing. Where I will be receiving treatment is minutes from both of my offices. I've had coworkers pledge to sit with me through chemo, learn Esther-Faith's medical stuff, handle some of my duties at work, go to meetings for me, and just hug me when I find myself crying at my desk. These people are amazing. When this is over, and I survive, I cannot wait to throw a party for these people. A big "thank you" charcuterie party with live music and specialty drinks. Maybe I'll make one up called "cancer sucks, but you don't" or something.

I have some really amazing people in my life. Near and far. And if you're reading this, you're probably one of them. I have a friend who is on this same road, just a little bit ahead of me, who sends me photos every couple of days of the mountain ranges she lives between--always with the subject line, "For your soul, while you wait." She knows how I feel about the mountains. She knows what my soul needs right now. She has given the best advice so far. When this is over, and I survive, I cannot wait to visit her on the other side of the country and take in the majesty of the place that she lives while we celebrate living and surviving.

My family. Parents and step parents and siblings. You know, growing up I could not imagine that my siblings would still mean so much to me. And then marrying into an amazing family, how much those siblings would mean so much to me. But they do. It's like I have this tribe of younger and older siblings--and by extension, spouses--who somehow know when I'm in the depths.

My sister-in-law checks in every couple of days to see how I'm doing. She has leveraged her network to put me in contact with others who have walked this journey and can provide support and counsel. My brother-in-law, who lives 1324 miles (19 hours and 33 minutes) away, texts every couple of days with a simple, "I'm praying for you," or an "I love you." My brother can be counted on for highly inappropriate messages or to exchange zillow listings in the mountains.

And my sister was with me when I got the phone call. She held me as I sobbed into her hair. She didn't tell me it was going to be okay or give me any bumper sticker advice. She just held me when I didn't think I could possibly stand.

My in-laws ("in-loves," I've been known to call them) are also waiting for what they can do to help--even though they have their own surgeries and recoveries to think about. They have called on their close friends to be there for them, and us, as we head down this road. They call and text with encouragement or tears, but they always seem to know when we need them. 

When this is over, and I survive, I cannot wait to have a huge family get-together and make everyone their favorite thing. Ladyfingers or chicken marsala or spicy feta dip or blue cheese portobello scalloped potatoes or vanilla pie or pancakes or whatever. I'll cook and bake for days for these people. DAYS.

Neither of my sons could process the news. Both kept saying, "WHAT?!" into the phone. I wanted to reach through the miles and just hold them like I did when they were little and something was scary.

Within 12 hours, Isaiah had already talked to his boss and is standing at the ready. His boss told him, "Do what you need to do: Family first." Isaiah said that whenever it gets really hard--because he knows it might--call him and he would come down and drive Esther-Faith to her things and help Tim with whatever. He said he would move into the guest bedroom for as long as needed. This child. My heart. We've been through the fire, he and I, but what a beautiful and tender relationship has been left in the heat of that sometimes excruciating flame.

If you know Tim, you know he's a fixer. Your car won't run? He'll help you get it started. You need to build a wall in your house? He'll be right there. You need to move at a moment's notice? He's got your back. But this? He can't fix this. It's overwhelming him and and he is scared. He can't even say the words "Karin has cancer" out loud yet. He just can't.

Esther-Faith has made it clear that she chooses life--no matter how aggressive we have to be--LIFE is her choice. But Tim, he's having a hard time. Part of it is my cancer anger. And my cancer fear. And my cancer purging. And my cancer depression. And my cancer talk. But mostly, it's my cancer. So, he loses himself in the things he can control. Shoveling snow. Changing light bulbs. Learning "Pride and Joy" on his stratocaster. Setting aside the things I think I want to throw away in case I change my mind later. And taking photos. He is going to document all of this through the lens of his Nikon. He's a good photographer, and it is going to help him cope by documenting this journey.

Tim is keeping a list of people who say, "let me know if you need anything" because he plans to make good on that promise. If you say that to him, know that he is writing your name on a list in his phone, and he will call you later. Maybe not next week or the one after. But he will call when he needs the help. He still has a demanding job (that he loves), and he is going to need help. Honestly though, he's not good at asking.

We meet with a host of doctors and surgeons in the next week. Then we will know what stage this cancer is. We will have a treatment plan. We will have picked our poison. We will know more than we know now. I think both of us will feel better once we have a plan. But that plan will combat the cancer, and that's what we can't change: I HAVE CANCER.

I have cancer.

© 2006-2019 Karin Shirey Henn, all rights reserved. 
Copyright notice: All content, including writings, artwork, photographs, or videos, posted on this blog is original to Karin Shirey Henn and the HennHouse unless otherwise stated and may not be reproduced without permission.