In my pastoral journey with people, I have often reflected that our world starts small and ends small. For the first days and weeks after our birth, our whole world is in someone’s arms, only as large as our tiny reach. As we grow, our world gets bigger–beyond our parents’ arms, beyond our home, beyond our town, out to everything we can explore in the wide world. Our horizons widen and we live a bigger, more expansive life. Then, as age and sometimes disability set in, our world begins to shrink again. I watch elders cease their world travels, then their driving about town, then going out at all, and sometimes even spending their last weeks and months confined to one room. In this human life, our world starts small, and it often ends small as well.
I’ve been thinking a lot about this observation as the chemotherapy cycle has shrunk my world. Just when we have moved to this amazing international city, ready to explore and broaden our world, my orbit has been reduced to its smallest ever.
For the last four weeks, my world has not been more than home, church and hospital, with few necessary (and energy-draining) exceptions. Anything else is beyond my capacity. I should have had a good week between cycles to get out and about, but I caught a nasty virus-turned-infection that knocked me down hard. It’s been two weeks and another treatment since that set in, and I’m still not recovered. (Yes, the doctors are on it.)
Chemo tired is a different kind of tired than I’ve ever experienced. The best comparison is to the first time you get out of bed after having the flu. You don’t have the flu misery anymore, the fever is gone, and you feel so much better you head for the shower. Only you realize halfway through the shower that it was a lot to take on, and you feel like you might pass out before you get the shampoo rinsed out. You might hold on to get the soap out, but then you fall into bed for a long nap to recover. That’s what chemo fatigue feels like to me. I get winded and light-headed, and absolutely must sit or risk falling over. I’m just weak, and I spend a lot of time lying down. We joke and refer to these as my “sad and pathetic days.”
Though I’m a little bit fatigued like that all the time, most days I am able to get up, shower and dress, rest, and then catch a bus that is close to my house and lands me close to church and hospital. (The Tube is too many steps.) I can go into my office and work for a few hours, then have the energy to walk down the street (not too far) for lunch. In the afternoon I can sit at church or hospital for a few more hours and have the energy to ride the bus home. When I get home, I usually need to lay down and rest for an hour or two. Then I get up and enjoy supper with my family, and go to sleep for the night the same time as B, around 8:30. If I am having a good energy day, I might try to wash a few dishes (I can’t make it through a whole meal’s worth), or clean up a bit to help J, or just lie on the couch to watch a TV show. In the last two weeks, I’ve had enough concentration to read again. Once or twice, we have made it out to eat, somewhere close. On Saturday, I was determined to make it to the library to return overdue books. It was a short, flat walk to the bus, just a few stops, then back again. The journey was too much. I got to the library and had to sit in a chair for 30 minutes, drifting off to sleep before I had energy to walk back out to catch the bus home. Today, I had arranged to take the day off so that we could have a family outing in London. J and B had to go without me. I slept until noon, took a shower and dressed, but then I needed to go back to bed. I am using my saved energy to write this instead, while they have an adventure.
My world is very small and simple. We smile as we call it “sad and pathetic.” But here’s the thing: it is enough.
I can hardly believe it, but it’s true. My small, simple world is all I need to be happy right now. I don’t have energy for extras, but I am able to do what I am meant to do–to be minister and mother, and even sometimes companion to my spouse. I am not doing my ministry work with the level of energy and flair that I would normally show, but I am capable of planning and leading Sunday services, tending to weekday business, learning about my new congregation, helping address some administrative issues and more. I am doing enough to make a contribution, and feel as though I am serving God and church right now. That is satisfying.
The same is true for parenting. I can’t take B to the park or the museum, but I have all the time he needs to tell me about his day. I can listen and ask questions and be present in ways that I probably would have been too busy to attend to at normal speed. Every day, we spend time together, even if it’s just with me sad and pathetic on the couch while he plays Minecraft. It feels like enough.
I don’t make a very equal partner to J right now. We have always tried to share the household responsibilities, but he’s doing everything for awhile. While he had planned on being a stay-at-home dad for our first year in London, neither of us planned on cancer. He is understanding and patient with me. I often need to be patient with him, because I want things done my way even when I can’t get up and do them–which is my problem, not his. I don’t have much time to stay up late for conversation, but I still feel like we are close. We are two independent spirits, even after 20 years together, but we are leaning into one another deeply right now. It is enough.
My world is so very small, but satisfying. We can laugh about being sad and pathetic because I am neither–not sad or pathetic at all. (Ok, maybe a little pathetic when I fall asleep all the time.)
From the outside, during all those years of pastoral ministry, I imagined that a huge grief descending as one’s world got smaller and smaller. There are definitely days now when I am disappointed I can’t do things, like see London or just finish unpacking from the move. I get frustrated by my inability to accomplish something as simple as changing the sheets or going out to a cafe to write my sermon. Even so, I am not feeling grief over my small world right now. I’m feeling a great deal of gratitude. Chemo may be slowing me down, but it has not robbed me of what I love and who I am. I am still able to serve as pastor, parent and partner, and those things bring me enormous joy and satisfaction. Yesterday, in spite of feeling poorly, I was able to prepare a special World Communion Service, leaning heavily on lay leaders to carry the Sunday morning leadership. It was wonderful! Then, we came home and watched B’s favorite team, the Jacksonville Jaguars, play here in London. I may have spent the afternoon lying on the couch, but I could cheer and enjoy the time with family. It was more than enough to make a good day, a good life.
My small world is full and rich, and I am grateful.
Some have worried that my silence here and on social media is a sign I’m not feeling well. Quite the opposite! For the last 8 days, I’ve felt great. I’m not 100%, but a good 95% every day. All of that energy has been poured into work and home, rather than blogging. It’s been a very busy start to the fall, as we’ve had back-to-school events, major church events (requiring some big prep), and an attempt to unpack as many more boxes as possible before I get knocked down again today, when I go for my second treatment. There are several posts waiting to be written, but after my last post about hair, I figured I should follow up with the rest of the story.
A few days after my first treatment, I went over to the MacMillan Cancer Centre to meet with N, who is their wig expert. Everyone raved about her skills, and they were right. The NHS subsidizes one synthetic wig for every cancer patient with hair loss, which keeps the costs manageable. (One of the posts waiting to be written is about how great the NHS has been so far.)
The process of choosing a wig involves looking through a catalogue of beautifully made-up models wearing perfectly styled wigs, and choosing three you think might look decent on your not-so-beautifully-made-up head. Then, when they come, you try them on and choose which one to keep. N led me through the process. As I knew going in, there is no wig to match my hair. There were some curly wigs, but let’s just say they were not my style (see below for some hilarity on this point). I tried to go for something in a similar color, and with some volume, because I couldn’t imagine having straight, flat hair.
They arrived a week later, and I took my husband and son with me to help me choose. My husband J has a great eye for these things, and I knew my son B would tell me by the look on his face if it was all wrong. Pictures and descriptions follow, but note that I still had all my hair when we were trying these on, so they sat a little bit high and funny on my head at the time. We had to use our imaginations, and you will too.
We tried on the three that I ordered, and only one was even passable. However, N jumped right in with more suggestions. It turns out she had a closet full of wigs others had ordered and not used, so I could choose from those as well. She lived up to her reputation as an expert–she pulled out a several that were much better than the ones I ordered from the catalogue, including the one I finally chose. In the end, I probably tried on at least a dozen wigs. However, we only bothered to photograph the finalists–plus one bonus just because it made me laugh.
This first one is the passable one of the three I ordered from the catalogue. It looked just like my hair when I was a little girl, up until around age 10 or 11, before the curls arrived in full force when I was 12 or 13. I had a bob cut with bangs, and my mother rolled the ends under on Sunday mornings and picture days. When I looked in the mirror, I still felt like myself, though a bit reincarnated from an earlier version. I also thought I looked like Velma from Scooby Doo, who I always liked anyway. It could have worked.
The second one I really wanted to love. My paternal aunt Carol Ann had long red hair. Hers was thick and wavy, and a differently styled cut, but it was always a signature beauty. In addition to being my favorite aunt, she also had breast cancer, and it took her life 17 years ago. I know that the medicine I receive today may have been able to save her life, and her spirit feels very close to me in this journey. I wanted to wear this wig as a tribute. It was a look that made me feel the most pretty, unique and striking. However, it also was a wig that would draw attention to my hair, and I wasn’t sure I wanted that. The cut wasn’t quite the image I’m trying to portray. It was odd (and a bit annoying) to have all that straight hair running down my shoulders.
I couldn’t quite figure out what didn’t sit right about it, because it did look good on me and I felt quite beautiful in it. J named it: it’s a very Southern look. I recognized it as soon as he said it. Now, I’m from Virginia, and I can rock the Southern belle charm when I want. But I don’t want to do it all of the time, and this look makes me feel like I should. It felt fun, but like playing dress up. It just didn’t capture the persona I inhabit every day at the office or in the pulpit. It’s also a more casual look, and I wanted something more professional. However, if I end up wearing wigs regularly, I’d go get this one for those days when I felt up to the fierceness of my Southern roots and the spirit of my Aunt Carol Ann.
Where we ended up was with one of N’s suggestions. Something totally different from my normal look, but conveying a sense of being put-together, ready to focus, professional and neat. And blonde! I was blonde like my son when I was younger, so it works well with my coloring. J saw it immediately as the best choice, but it took me a bit longer to warm up to it. He recognized that it fit my face and my style, and communicated the person I am and want to be in the world. (I told you he was good at this stuff.) B nodded along with some measure of relief on his face, like I looked “normal” in this one. That’s exactly what I was going for.
Ta-da! Remember I had a full head of curls tucked underneath, so it sits a bit high on my forehead, but I like it. J was right–it’s just right to look good without drawing attention. It’s easy, professional and ready-to-go. I mainly want a wig so that my lack of hair is not a distraction from my life. This one fits the bill perfectly. I’m pleased.
Ready for some fun, though?
N had a wig in her closet that is an exact match for my hair. It’s my natural color, and it imitates my natural curl perfectly. However, it’s about the worst haircut I could imagine. It’s just… not me. Not who I want to be. If I was trying to be a successful country music star in the 1980s, this would have been perfect. Maybe if I worked at Dollywood now. One time, days before my college graduation, I went for a haircut and ended up with something similar. I cried and cried and went back and made them cut it all short to fix it as well as possible. Every single haircut since then, I have given very, very specific instructions to make sure it doesn’t happen again.
This time, I laughed and laughed, took pictures to share, and then happily removed it from my head.
Behold: the curly mullet.
Thus continues the cancer-fighting strategy of finding laughter when you can, because there’s plenty of suffering to go around. We all got a good laugh out of this one, and I hope you do too. This is TOTALLY like my natural hair, doing exactly what it would do if I ever cut it in that fashion. But no. Just no. Not ever.
Unless Dolly Parton herself comes calling for a backup singer. I’d do it for you, Dolly.
Any day now, I’m going to lose my hair. It’s holding on for now, but the day I find the first clump in my hand, I’ll shear the rest of it.
Some people will think it’s silly and frivolous to get worked up about hair, but I have strong feelings about my hair. Strong feelings of love. I love my hair.
Like most women, I have a very long list of things I don’t like about my body, and a very short list of things I do. My hair. That’s my list of things I like. If you pressed me, I’d probably add my eyes and my legs. Those are pretty decent. Sure, most other things are tolerable. I have a healthy self-image, so I can’t think of anything I hate about my body. It’s just my body. But my hair? That brings me great joy, and I say without hesitation that I just love it.
I hit the lottery when it came to hair. It is thick and healthy and chock full of natural curl. It didn’t even get noticeably gray until I hit 40. (Yes, I do color it now—and it has been a lot of fun to experiment with some fun shades.) Curls are fun! You never know what shape they will take. They are sometimes thick and framing, sometimes wild and frizzy, sometimes sticking out at odd angles. I love waking up each day, or looking in the mirror after they dry (naturally, no blow-drying!) and seeing what shape they have taken that day. It’s a small pleasure I enjoy every day.
My hair takes little time or effort to style. On days I don’t wash it, it takes about 30 seconds. When I wash it, less than 5 minutes. Brush, shake, scrunch, apply gel, scrunch some more. The end. One rule of my hair: NEVER brush it when dry. So I only even brush a couple times a week, wet from the washing.
This means I get no credit for my hair. I don’t do anything to make it look the way it does. It is a gift, not something for which I can claim any credit. I think of it like a gift from God. Or, more accurately, when I need to be reminded about gifts from God, and how we are to stop and appreciate all the beauty God gives us, and how we do not earn the things we have in this life, I think about my hair. Seriously. You can have your flowers and birds and mountains. I get the gift of my hair.
I am going to miss seeing my hair in the mirror every day. I’m going to miss the wild little things it does, and the feel of it blowing around in the wind. I’m going to miss that one curl that gets in my line of vision, reminding me of the cuteness above. I’m going to miss running my fingers through it in the shower, and twirling it when I am tired, and lifting it up off my neck when I am hot. I’m going to miss pushing it behind me on the pillow so the curls don’t get squished, and deciding every third morning if I can go another day without washing it.
These things matter to me. They are an important part of my day, and they bring me a great deal of joy. I am working through some real grief at the loss of my hair. I’m not sensitive about being bald, I’m just sad to lose this thing I love about myself.
I am also realizing that some comments—while intended to be helpful and supportive—don’t help. So, friends and family, I’m telling you in advance what to say and what not to say. (And, to be clear, this is MY list, not a list for every woman losing her hair to cancer. YMMV.)
- Don’t tell me it will grow back.
First, because I know that. Every person who’s ever owned hair knows that it will grow back. I’ve endured bad haircuts and too-short haircuts and lived to tell about it, just like you.
Second, because it might not grow back—or at least not the way it was. Chemo changes your body in many ways, and the hair that grows back is often not the same as the hair you lost. In many cases, straight hair returns curly. My curly locks may get curlier. Or they may come back with no curl at all. I have to be prepared for this thing I love about myself to disappear. That doesn’t mean I don’t love myself anymore, because my self-esteem is not just about my hair. But it means that, whether the loss is temporary or forever, I am grieving it.
- Don’t tell me it’s only hair.
I know it’s only hair. I know it’s not who I am. I will happily lose my hair to keep my life, but it is still a loss and a grief. Dismissing it as “only hair” closes down the space for me to share what I am feeling.
Hair is just one of the losses induced by cancer, and one of the ones that is the easiest to talk about in a public way. I won’t talk about the other losses that are closer to the heart, like the loss of time, the important events in my son’s life I’ll likely miss, the opportunities for ministry I will not have energy to follow-up on, the books I miss reading because I can’t concentrate, the vacation I’d been waiting for but never got to enjoy. There are countless griefs you cannot see. This is the one you can, and one that seems alright to share and grieve more publicly. Please don’t dismiss it or close down the space for my sadness. I know it’s only hair, but I love my hair. A lot. So I get to be sad about losing it.
- Don’t tell me that I might keep it, if only…
I believe you when you say your friend ate only kale, did sixteen hours of yoga a day, stood on their head for an hour every night and therefore held onto their hair, so I could too. I’m still not going to do that. They offered me the use of a cold cap, which helps some people hold on to their hair. It was painful and uncomfortable, and I decided within minutes I didn’t need the added discomfort during treatment. It’s just not worth it. Every single doctor and nurse has told me it’s almost certain to go, and I’m not inclined to fight it. As much as I love my hair, I’m not willing do whatever it takes to keep it. I’ll let it go, and deal with whatever follows.
- Don’t tell me I’ll still be beautiful to you.
This one is hard to explain, and may be hard for you to hear and understand. It also may not be true for others, but it is for me.
First, there’s this: For me, losing my hair isn’t about feeling ugly or having you think I’m ugly. In fact, I didn’t even consider that some people would see me as ugly until people suddenly started reassuring me that THEY would still think I am beautiful. If anyone thinks that a cancer patient is ugly, they are just a jerk. If you are my friend, you don’t need to reassure me you aren’t a jerk. I know it already.
More deeply, though, is this: I don’t much care whether you think I’m beautiful. I don’t look the way I do to please you or anyone else. There is far too much emphasis in this world on women’s appearance. Ask any professional woman you know—clergy, lawyer, doctor, business executive, professor—and they’ll regale you with stories of inappropriate comments about their hair, clothes and make-up. And then they’ll regale you with stories of comments considered totally appropriate, but that still irritate because they provide further evidence that people (men and women) still judge women’s worth based on how they look. General opinions about our looks are usually a way of sidelining our ideas, or reminding us that being pleasing to look at is more important than our contributions, or simply re-establishing our place as objects rather than agents. When you tell me you still think I’m beautiful, it makes me wonder why my beauty (or lack thereof) matters to you, unless you are my spouse.
I’m not saying that I don’t care about my appearance. I care a lot about looking professional and put together, out of respect for the office I hold and the church and the God I serve. I can do that just fine when I’m bald. I can wear a wig when I don’t want to look like I have cancer, or a neatly-tied scarf to bring some fun color to the day. I even took a special class last week to learn some make-up skills, so that I can still look professional when my skin is wan and my eyes have dark circles. I care about my appearance enough so that it is not a distraction or an impediment to the work I am trying to do. That has nothing to do with whether or not you think I’m beautiful , so I don’t care to know.
So what instead? What do I want to hear from you right now? Here’s a list of ideas.
- Help me think about how much fun I could have with wigs. Be fun! Laugh about trying something completely different. A couple of women after church yesterday were giving me great encouragement about my new wig, followed by a Facebook post of a fashion icon with the same look. Perfect. Wonderful. Appreciated in every way. (Note: This is safer territory for women than men. Tread carefully if you are a guy.)
- Smile and say, “bald is beautiful.” (This one is a perfect go-to for guys already sporting the look.)
- Say, “you’re looking good, how are you feeling?” “Looking good” is not about beauty, it is about health and vitality. Asking the follow-up question indicates that you realize the outside may not match the inside, and gives me space to share.
- Send me fun scarves to try out, or suggest how to coordinate them liturgically.
- Acknowledge that my grief is real and that this whole cancer business just plain sucks.
- Tell me you can’t wait to see what I do with my new hair, whenever it arrives.
- Hold my hand and cry with me.
- Make jokes about teaching me how to use a curling iron and blow drier if needed. (I honestly don’t know how. I quit before I was 15.)
- Watch how I talk about my hair, my cancer and anything else, and match my mood and expressions. If I’m making jokes, you can too. If I’m serious, go there.
In the time since I first learned I would undergo chemo and lose my hair, I have been spending extra time enjoying it. I have taken extra selfies on good hair days (see all the pics in this post!), indulged in the expensive Pantene shampoo and conditioner instead of the store brand I usually use, spent extra time looking in the mirror, and generally trying to appreciate my hair for the gift that it is, before it goes away. Sometimes the best gifts from God do not last, and this might be one of them.
Today counts as Day 10 in the 21-day chemo cycle. Day 1 is infusion day, and it proceeds from there. It’s been a long 10 days. The short version is: I was really, really tired and loopy for days 1-4. It was foggy, but I could function. Chemo was going fine. And then suddenly it wasn’t. One of the side effects overcame me, and days 5-8 were really bad. I could barely get out of bed, and I had to leave in the middle of worship because I thought I might pass out. Days 9-10 have so far showed signs of improvement, and I’m feeling more like myself again. For the next round, we should be able to anticipate and head off the side effect, so things don’t get so bad.
There is a lot more to say about all the things that happened in those days, but I write to process my thoughts and feelings. That means looking smaller, breaking things down, capturing fleeting moments that somehow speak to something bigger. I tried writing about all of it, but I couldn’t do it. I don’t care to keep a log–I write to go deeper. That means all I can capture today is one small part of the story, one moment from Day 1. I am hoping, as I improve, to share some more moments along the way. It’s important to me to have this space, because I want witness. I want a witness, a written account of all that I am going through so that I can remember it. And I want witnesses, people who will hear the story and carry it with me.
So here’s just a bit of the story. There are more stories to come. Harder ones. But this is the one that I found myself ready to write tonight.
On my first chemo morning, I went to the office. Not the doctor’s office, but my office, the church office. I figured I should work while I still felt well, and I needed something to occupy my mind while I waited for my 12:45 appointment. I blasted through a pile of e-mails and thank-you notes, assuaging my guilt at the slow response time likely in my post-chemo days. When the time came, I took the quick walk to the MacMillan Cancer Centre.
It’s hard to describe how I felt walking in. Scared, of course–but not frightened of what might happen, or dreading the worst. Just anxious to find out what these drugs would actually do to me, how terrible I might feel, how hard this journey will be. At the same time, I was also relieved, and even a little bit excited to finally get started. Those killer cancer cells have been allowed to grow freely inside of me for too long, and I was ready to put a stop to them. I can’t get well until I get sick. A starting date gives me an ending date, a calendar and to-do list and countdown for the next 18 weeks. I’ve known about the cancer for nearly two months, and this was the first treatment or procedure that was actually going to fight it. At last, we’re taking steps to get me better, even if those steps will make me worse.
That’s the brave attitude I tried to keep and show when I arrived, checked in, and sat down to have my IV cannula put in. My facade was crumbling fast, though.
First of all, I didn’t expect them to go searching for a vein in the top of my forearm. Who looks for veins there? I usually have good, easy-to-find veins, but I also have been savoring a nice summer tan–making them quite invisible to the nurse’s assistant trying to locate one. She brought over a wastebasket filled with a bag of warm water, and had me soak my whole arm in it for 10 minutes. It was a little bit like memories of sleepovers, where you put someone’s hand in warm water because it supposedly makes them have to pee. It didn’t make me have to pee, but it did make my vein pop out so she could find it.
Second, the only way I can handle IV needles and blood draws is by pretending they aren’t happening. Before I learned this strategy, I would routinely pass out and/or vomit at the prospect. Now that I am older and wiser, I am cool as a cucumber–once I tell the person doing their job that I’m going to close my eyes, and that they need to talk to me anything that’s not happening to me right now. The poking and thumping and talk of finding veins made that hard to accomplish.
Thankfully, the nurse was gracious and we easily switched to a new topic. Usually, my “pretend I’m somewhere else, chatting with a new friend” strategy yields some lovely connections, as I ask after people’s kids, hobbies, television habits, vacations and sports loyalties. The conversation with my IV cannula nurse started out in a very typical London style: “So, your accent isn’t British. Where are you from?” (London is such an international city, it always seems there are more foreigners than Brits.) I can’t even remember who started it. It turns out she is from Iran, and has only been in the country for seven months. At six weeks, I was still the newer immigrant. She shared that she had traveled all over the world–Europe, Africa, Asia and even Canada and Mexico. “Not the United States?” I started, then realized: “Oh, it must be hard to get a visa on an Iranian passport.” Yes, of course. “And it would be just as hard to get a visa to visit Iran on a U.S. passport.” We talked about the various sites we wished we could see in one another’s home countries. I want to see ancient civilizations, she wants to see natural wonders. “Here we are,” she said, “just two ordinary people, talking and sharing just fine. Only the governments want us to be angry with each other.”
Amen. A beautiful moment of connection. A bond of peace across countries usually known for their mutual hostility.
But it was more than that. Something shifted for me in that conversation. This wasn’t just small talk to get me through the needle moment. This was God showing up for me, in the hands and voice of a Muslim immigrant. She reminded me why I’m here–to help God’s love bring people together. I am here (not just in London, but on the earth), by the grace of God, to open myself to moments of connection like this one, where we discover the love of God binds us, in spite of the barriers the world erects between us. I am here to witness moments like this one and share them with others, so that God’s love grows more real and tangible among us and in the world. That’s my ministry calling. I’ve served in many settings and done many tasks of leadership and ministry, but time and again I discover that this is my true work: naming the ways God’s love is at work in our midst, and helping people work through human differences by the power of those stories and God’s grace.
It’s that calling that has been providing me courage and strength in the cancer journey. I never had confidence that God would preserve my life. The doctors tell me they can, and I believe them, but I do not profess that God is keeping me protected. I’m not special. As a pastor, I have buried too many good people who died too soon to abide by the theology that God chooses favorites. My work keeps me close to the constant reality that I could be next. Faith provides instead the assurance that God will not leave me, no matter what; that resurrection is real and death is not the end; and that God can redeem anything, even cancer, even the cross.
My prayer life has also provided this confidence: God will preserve my call. God may or may not preserve my life, but the Spirit has convinced and convicted me that there is work ahead for me here in London–that same work of finding and naming God’s love that unites us all. It’s the work that my Iranian nurse did with me, in naming our common humanity. Her words of connection took me out of the fearful place and back into the faithful place–the one that knows God is with me, no matter what, and all I need to do is face forward and follow God’s call.
Though she is only a nurse’s aide here, my cannula nurse was trained as a highly skilled nurse supervisor in Iran. Once her English skills improve enough to pass the language test, her credentials will transfer. Her English seemed excellent to me, but I promised to pray for her as she studies and prepares. I hope to see her when I return for my next treatment, and maybe ask if she wants an English conversation partner to help her get ready.
I went back to the oncologist on Thursday, thinking I would still need my as-yet-unscheduled echocardiogram before beginning chemo. Much to my surprise, the oncologist offered to let me start right away–the next day, even! I requested to wait until Monday, so that all my treatments will happen on Mondays–giving me the best chance to be well for Sunday mornings. So here we go.
We spent the weekend as a family enjoying ourselves, knowing that I won’t be up for a lot of extra adventures in the coming months. On Friday, we had already planned to take the train to Brighton, a seaside town on the English Channel, to spend the day with a church family. Having grown up at the ocean, the sea has always been a spiritual place for me, so there was nothing better for my soul than the salt air in my hair and the cold salt water on my feet. Saturday included a long baseball practice and sermon-writing, which has been my beloved Saturday routine for quite a few years now.
Last night, J and I engaged a babysitter and enjoyed a great date in our new city. We didn’t do anything special, just wandered around the theatre district and Chinatown, stopping for drinks and dinner. Along the way, I found myself a cool hat to wear when my hair falls out. I’ve always loved hats, but the curls are so afflicted by hat-head that I don’t wear them very much. We stopped and picked up dark nail polish, which the nurse said will help strengthen my nails during treatment.
I had feared that there might be a cloud of awkwardness or a sense of forced frivolity over the evening, but that wasn’t true at all. (The bottle of wine we shared at dinner probably helped.) Cancer was definitely present, but we had fun trying on hats and laughing about side effects and picking out goth nail polish (especially since I haven’t painted my fingernails in years). We also just had fun being ourselves. We love city life, and it’s been 10 years since we had the chance to go out and just enjoy an evening in the city together–our favorite kind of date night. We wandered in bookshops, watched the people around us, found curious signs, meandered into unknown corners and just enjoyed ourselves. London feels like home already. I went to bed happy and relaxed, not anxious at all.
This morning, I’m headed to the office for a couple of hours before I walk the two short blocks to the clinic. The injections/infusions will only take an hour, but the clinic warned me they usually run very late. I am set to arrive at 12:45, but will likely be there all afternoon. That means I’ve spent a long time considering what to pack in my bag. Here’s what I came up with: a good novel and a good book about church leadership; a memory stick with downloaded movies from my father-in-law; my laptop, pen and paper in case I feel like writing; my phone to correspond with friends via Facebook; snacks; and a lovely pink lap blanket my mother made for me, which makes me feel wrapped in love in every stitch.
I’m also taking all of you with me. I woke up to a phone full of messages from my closest friends, family and church folks who know today’s the day. If my experience so far is any indication, those of you reading this will send prayers and encouragement as well. Those messages are much appreciated, and make me feel like you all are with me today.
Several folks from church offered to come visit or sit with me during the treatment, since J will be busy watching our son. I am beyond grateful for their offers, but turned them down, at least this time. I am enough of an introvert to think I’ll do better on my own, lost in a book and enjoying the quiet time to do my own thing. But I also told them that I most definitely won’t be alone when I am there. The cancer centre has an excellent wireless connection, and I can reach out to so many friends at any time, just to share what I’m feeling or report something funny or ask folks to send good thoughts.
I have had some moments of fear, anxiety, frustration and dread since the date was finally set on Thursday. On Thursday and Saturday especially, my heart felt heavy and my mind was unable to focus. I did some private writing (which may be shared later, when it’s not so raw), and some praying, and I awoke this morning feeling good and ready to get started. I am supported, cared for and loved in every way, which makes a huge difference. It’s about to get rough, I know, probably harder than I can even imagine at this stage. There’s nothing I can do to stop it, avoid it, mitigate it, or postpone it (don’t want to do that one anyway). So, I’m facing forward, knowing you guys have my back and God’s got the rest.
I know you are eager for the chemo details from last week’s meeting with the oncologist. They are here–but I just have to tell this whole story. Skip ahead if you have to, but I hope you won’t.
Last Sunday, a church visitor turned out to be one of the church’s former associate pastors, from nearly 30 years ago. He was in the UK on sabbatical from his current church. After worship, we retired to my office to talk about the church’s history and ministry in this unique place. I was eager to hear about his time here.
As he inquired about my plans for getting started this fall, I had to pause to explain that my plans were a bit uncertain, because I will be going through cancer treatment. His response? “Wow! That’s great! That makes me feel even better about your call and your ministry here.” Trust me when I say that, in context, it was not creepy or weird for him to cheering when he found out I have cancer–in the moment, it made me smile and feel a great sense of spiritual understanding. He explained that he has seen many pastors go through terrible trials at the beginning of their ministries in new churches. In his experience, if pastor and congregation can pray and share grace with each other through these challenges, they go on to have incredible, transformative, life-changing, world-changing ministries together. That’s what he immediately recognized as I shared my story of new church, new country, new cancer diagnosis all in the same month.
He was really energized and passionate about both my ministry and my cancer, and how they will go together. With great enthusiasm, he said, “You’re going to get the crap beat out of you! It’ll be great!” I broke into open laughter, because it was both an absurdly ridiculous thing to say and the most true and wonderful thing to my soul.
I have been feeling throughout this whole process that I will be broken down, broken apart, broken open. I will be changed in ways I can’t even imagine. Vulnerability has always been a struggle for me, so being weakened and in need of support is sure to be a growing edge. I am both terrified and hopeful.
My friend Molly Phinney Baskette is also a pastor and cancer survivor. She referred to her cancerous mass, and the space it left behind, as her “Holy Spirit Portal. The way God gets in.” (I recommend her beautiful post about it.) I feel in my deepest place of faith and hope that this cancer will be a way for God to get into me too. Not that God gave me cancer, or that God is happy about it, but that this experience of weakness will lead me closer to the strength of God, that this breaking will transform me in God-soaked ways that might manage to make me a better pastor, preacher and person along the way.
In other words, “You’re going to get the crap beat out of you! I’ll be great!”
That same phrase is the perfect description of my meeting with the oncologist and oncology nurse last week. After some preliminary questions making sure that I was confident in the quality of the pathology work from the hospital in Louisville (I am!), the doctor began to describe the chemotherapy drugs and schedule I will be facing. The sentinel node biopsy three weeks ago indicated no presence in the lymph nodes, placing me at Stage 2, Grade 3. (Stage 2 because the tumor was more than 2cm, Grade 3 because it is the aggressive, fast-growing kind.)
My kind of breast cancer is estrogen and progesterone negative, HER positive. That means it is not driven by hormones, but it does show a particular mutation in a particular protein. Thankfully, they have a special drug called Herceptin that targets and kills the cells with that particular mutation. Herceptin works very well, and that is what makes my prognosis so hopeful.
I will have six cycles of chemotherapy, known as the FEC-T protocol. Each cycle is one day’s infusion, followed by 20 days of rest. That means one dose every three weeks, for a total of 18 weeks, 4.5 months. For those who like or understand technical details, the first three cycles will be a cocktail of Fluorouracil, Epirubicin, Cyclophosphamide and Docetaxel (aka Taxotere, for the T in FEC-T). The second three will be the Docetaxel, plus Herceptin. The Herceptin does not cause the nasty side effects associated with chemo, and I will continue to receive Herceptin infusions every three weeks for an entire year. I will have surgery to remove any remaining mass and get clear margins after completing the six cycles.
After the drug names and schedule, the rest of the visit (more than an hour) was dedicated to rehearsing the many, many side effects I can anticipate. It was nasty and gross and intimidating and lousy in every way. (I’ll have another post about that stuff another time.) Yes, I will lose my hair, and a whole lot of other pleasures. It’s gonna suck, big time.
I went in to the appointment with lots of fears and anxieties. What about germs? Can I die if I catch a cold? Will I be able to get around the city at all if my blood count goes low and I shouldn’t take public transportation? What happens to my work and ministry life if I just can’t be around people because I am too vulnerable to infection? I asked all of those questions and more. To every question, they said, “You don’t need to worry about that. Just call us, come in, and we’ll give you something to take care of it.”
When I got home, J asked me, “So, what did they tell you we need to be worried about?” The light turned on in my mind, and I got a huge grin on my face. “Nothing,” I said. “They told me I didn’t need to worry about anything. They told me that a whole bunch of misery-inducing things are going to happen, but I shouldn’t be worried about surviving any of them, or the cancer itself, for that matter.” In spite of the long list of wretched side effects, I left the visit feeling hopeful and reassured.
In other words, “You’re going to get the crap beat out of you! It’ll be great!”
I go back to the oncologist today to sign consent forms and make sure my blood test came back clear. I have to pass an echocardiogram, and then we can begin the beating. Hopefully as soon as next week.
There hasn’t been much happening on the cancer front in the last two weeks. The official two-week healing period after the sentinel node biopsy ended on Monday, and I feel back to normal. I am allowed to lift heavy objects again, which allowed us to assemble my son’s new IKEA bed and mattress. We’ve also continued to explore London, including the gift of a ticket to see my first show–Jesus Christ Superstar in the Open Air Theatre in Regents Park. What a joy!
I’ve been working hard at my new church, spending lots of time meeting with staff and church leaders to help me orient. There is so much I am excited to do here. After three weeks, I am finally starting to get a sense of what projects will need to come first, and how to go about doing them. It’s frustrating to be eager to dive in, but always held back by the knowledge that treatment is coming. I can’t quite plan or commit to anything for the fall yet, because I don’t yet know my treatment schedule or how I will feel as a result.
In some ways, I feel like I am in denial about the reality of chemo and surgery ahead. I just don’t spend much time thinking about it. There’s nothing I can do to speed it up, procrastinate about it, get around it, prepare for it, or avoid it. So, I am doing the things I can–working, building relationships, enjoying London and trying to unpack our boxes. Most hours of most days, I don’t think about the cancer at all. It’s not that I am ignoring it or pretending it isn’t there. I just don’t generally dwell on things I can’t act on. Most hours of most days, cancer isn’t something I can impact and it doesn’t impact me, other than adding the phrase “as long as my treatment doesn’t interfere” anytime I schedule anything for the next six months. Consequently, I don’t think about it.I feel great, I look fine, so I and the people around me can forget about the cancer.
Tomorrow, that changes. Tomorrow, at last, I meet with the oncologist. I am expecting (hoping!) that he or she will present me with a schedule for my chemotherapy for the next 4-6 months, along with a list of the drugs I will be taking, all of their side effects, and everything that is going to be unpleasant about the next year of my life. I expect it to be sobering, daunting and hard.
In many ways, I’m glad and grateful this day is finally here. The sooner I start treatment, the sooner I finish treatment. I am eager to get this over with. I want the cancer out of my system NOW. So far, everything I have done is diagnostic. I am looking forward to procedures that actually move toward healing.
In other ways, I’m terrified. Once this starts, there will be no denying that I am a cancer patient. When chemo leaves me tired and feeling lousy, there will be no escape. When I look in the mirror and see a bald head, I can’t pretend all is fine. When there is a port in my chest 24-7, there’s a constant reminder of the dangerous cells lurking in my body, and the equally dangerous chemicals fighting them.
But now I’m getting ahead of myself again. All I’ll get tomorrow is the schedule (at best–though I’ll volunteer to get my port put in if they’ll do it right away). The hair loss and sickness won’t come until the first treatment. I’m hopeful that, after tomorrow, there will be one more short respite before the storm, a few more free days before cancer is a part of every day.
I’m preaching this weekend about worrying. In Luke 12, Jesus speaks the famous words also found in the Sermon on the Mount about “consider the lilies of the field” and the “birds of the air” (though in Luke he calls out the ravens specifically). Jesus tells us that if God cares for birds and flowers, God will also care for us–which means we shouldn’t spend so much time and energy worrying about things. He says, “Can any of you by worrying add a single hour to your span of life? … Instead, strive for God’s kingdom, and these things will be given to you as well.” (Luke 12:25, 31)
I’m telling myself that maybe this denial is just faith, just following Jesus’ instructions to let go of worry and look only to God. We’ll see what happens tomorrow. I could discover that it was really just denial after all. Whether it’s tomorrow or somewhere down the road, I expect to have lots of moments where worry and fear catch up and threaten to overtake me. I am trying to tell myself to “strive for God’s kingdom alone,” and let God and the doctors deal with the cancer. We’ll see how far that mantra goes once reality strikes, whether that is tomorrow or still some future day, when treatment interferes with my life, my schedule, my plans, my independence, my stomach, my hair, my energy, my courage.
I’m counting on you all to be there for me when that day comes, to point me back to God and striving for the kingdom again.