“No Idea What I’m Doing” by Michele Wheeler – A #MetsMonday Featured Post

It’s been a privilege to share #MetsMonday featured posts here on the blog for over a year now. Each one is so unique. This month’s contribution comes from Michele Wheeler. In 2016, Michele learned that her early-stage breast cancer had recurred. I know you’ll appreciate her powerful, moving article.

Update: Sadly, Michele died on June 23, 2020. She was 46. I am honored to have featured her writing at Nancy’s Point. Before her death, Michele was finishing up her memoir. She excitedly asked a few readers, of which I was one, for input on her book’s cover. Click on the book’s image below for more information and to purchase.

Be sure to visit her blog, A Crack In the Wall: Letting In Light On Hard Times.

Thank you for sharing your voice at Nancy’s Point, Michele. Thanks for reading, everybody.

No Idea What I’m Doing

by Michele Wheeler

I have no idea how to deal with cancer. Except a few things.

“How do you deal with the waiting?” my friend Tammy texted me. 

I didn’t respond right away. I generally stay away from advice giving. Mostly because I feel like I have no idea what I’m doing. I don’t want to become an expert at this. I don’t want to do it at all. But I need my days to be more gentle.

So, I keep working at getting better at cancering. 

Tammy had been having pain for months in her pelvic area, with doctor after doctor unable to find anything wrong. She finally got someone to look a little further. She was waiting for someone to call her with ultrasound results. She didn’t know when the call would come. 

She also didn’t know that I was, at that very moment, awaiting my own results.

My cancer marker was up, down, then way up the past three rounds. This latest test would tell me if I’d burned through yet another med. It would tell me if the sand in my hourglass would start falling a little more quickly, if I was running out of sand. 

When I first saw Tammy’s text, I first felt burdened by it. I had just used up all my reserves to pull myself out of thinking about my own test results. I didn’t want to revisit the topic; I didn’t want the pressure to respond. 

But being only on the receiving end of generosity is a hollow way to live.

I’ve had some people self-censor their conversations with me because they don’t want to further stress the cancer patient. I know this by admission or transparency, and it feels like pity. It makes me feel like they don’t think I’m capable of being of service to the people I love. And if I lose that, I feel like I’ve already lost a part of myself. 

I didn’t want to be called on. But I want to be called on. I am a walking contradiction. 

The more I thought more about it, I realized I’ve been awaiting results monthly for 3 years. Before that, I awaited results every 3-6 months for five years.

I guess I have a few tricks for waiting, and I offered Tammy a few suggestions: 

Trick #1: Find out when you’ll get results. 

I usually know when I’ll get results. It’s key. Because then I can put all that scanxiety into a box, put it on a back corner of a shelf and leave it there. Not gone, but not all open and jumping around all over me. When the stress of waiting sneaks out of the box, I put it back in the box, gently put that box back on the shelf and remind myself that I’ll open it later.

Trick #2: Distraction 

Yea, I know, easier said than done. I’ve learned it’s not helpful for me to be alone when I’m stressed. Reading a book doesn’t work, too much time in my head. I encouraged Tam to look to the things that she finds most engaging. Doing something with her kids perhaps? Watching an action comedy? Pop-up dance party in the kitchen?

For me, it’s working out hard or hanging with friends and family.  Depends on my mood.  

Tam got her results; they showed nothing concerning. She still doesn’t know what’s wrong though, so follow up appointments were scheduled. That would likely mean more tests and more waiting.

I asked if I could make another suggestion.

Trick #3: Go get yourself a treat. 

Spend an hour in the coffee shop to savor a mocha. Take a 30-minute walk in the woods. Leave work a little early. Whatever. Celebrate making it through that waiting. It’s also a reminder that you’ll make it through the next round of waiting. I usually try to eat a healthy diet. But on scan days, I get a raspberry scone, no matter the results. 

We all have our tricks for making it through tough times. Maybe sharing them helps us all. At the very least we can know that we’re not alone. There’s a comfort in that.

So I guess I kinda, sorta, maybe have a few more tricks. (See how uncomfortable I still am offering suggestions? You should probably just stop reading now. Like I said, I have no idea what I’m doing.)

Trick #4: Find a good therapist

Perhaps some of you married your first love, (If that’s you, just go ahead and skip this part, since my analogy won’t work for you.) but for the rest of us, think of finding a good therapist like dating. You have to spend time with a few duds until you find the right match. 

The first lady I saw said that the amount of anxiety I was feeling would never lessen, but I might be able to deal with it better. You mean I’m always going to be stuck in this ick? Maybe brutal honesty was part of her healing regimen. Maybe she had a point. But she depressed me. I never went back.

Next, I tried the therapist at my cancer center. We live in a small town, so for years, the center didn’t even have a therapist. When they finally got one, I went to see her. I was actually feeling pretty good, so I was able to lay out my stage 4 status with teenage daughters without breaking down.

But then, SHE looked visibly upset.

I asked her about her background, and she explained that she was an intern and had never worked with someone terminally ill. (In a cancer center? Seriously?) I appreciated her honesty when I asked if she thought she was equipped for this. She said she wasn’t, but she wrote down the names of a few other therapists.  

So, I drove 90 minutes to the big city and main hub of my cancer center to meet with another woman. She explained right away that she wasn’t actually a therapist. Umm…but the brochure says you help patients with emotional support.

She explained that she didn’t have the degree to do blah-blah-blah or bladdity-dah type of therapy, but she was thinking about going back to school to get her degree.

“But my friend asked me if I really wanted to listen to people complain about their problems all day,” she further explained.

I swear I think she even rolled her eyes a bit.

That woman should not be a therapist. 

But then I found…let’s call him Jack. Jack worked as a therapist in a cancer center for years, with both patients and their families. He’s been through this before. A lot. Jack can prescribe medications, and he works with me on what and how much to take.

The meds don’t solve my problems or erase them, but they do give me enough room to do that work.

We think of it like a glass of water. I’d been stumbling around with my glass so full, I had no reserve to handle anything. The meds help create a little space in my cup so that I can do the work of dealing, and acceptance, and preparing, and living in the present.

Jack is helping me find ways to manage my own grief so that I can get outside of my head enough to help my family. Jack is a godsend.  

Trick #5: Finding hope 

This has been hard for me.

My first year into stage 4, I was consumed by doing every possible alternative treatment alongside my conventional ones. Every second of every day, I was focused on beating cancer.

I hoped as a treatment. I hoped out of desperation. Please work. I don’t belong in this windowless, doorless room. Please. Please. Please. Yet I kept burning through meds at only a fraction of the average time that others get. 

I fell completely into despair and gave up on hope, instead lying down in a muddy trench. I walked around for months saying to myself I am going to die. I am dying right now because cancer is eating my liver.

And as screwed up as that sounds, it actually took away some of my stress. I guess it was acceptance. Before, I’d panic at any sensation on my right side under my ribs. Is it growing? Oh no. No no no. 

But after my despair/acceptance, I’d think, well, yes that probably is cancer, because I do have cancer. And for someone who’s dying, I actually don’t feel so bad. I had myself convinced that I was on a long slow walk to the end, no hope in sight. I didn’t know what to hope for. 

But with Jack’s help to put some extra room in my cup, I’ve been re-visiting hope.

I recently read the book The Anatomy of Hope: How People Prevail In the Face of Illness by Jerome Groopman. It’s a pretty good read. It’s helped shift me a little more towards the middle. Although I still can’t use the word hope, most days I’m not in that muddy trench.

My new mantra is to allow for the possibility that things will go okay.

I’m allowing for the possibility that my marker won’t be up again this month. That this med will work better then the last one. That the best of my life could still be yet to come.

I feel a little more like myself this way. 

But tricks for having cancer when you have kids…Oh, that’s a tough one.

My twin daughters were only 8 when I first got diagnosed with stage 2 breast cancer. And convinced I’d be fine, I made it as small as I could. When it came back as stage 4, they were 13, and…well…I’m probably not going to make it past this one. It seems impossible to see any way to make it better.

My oncologist told me that he’s heard his patients say that the best gift they can give their loved ones is the way they go through cancer. I found some strength in that for a while. Still do sometimes. Thinking of my girls, of their lives without me, is something that nearly breaks me.

But again, with Jack’s help, I’m working on how to be the Mom I want to be for my girls. I have no idea if I’m doing this the right way. I just keep trying. 

Trick #6: Be honest

I didn’t want to tell them. I didn’t want them to have to bear knowing. But I can’t hide it. And by shielding them, I take away their opportunity to talk if they need to.

Hiding this creates a separation when we need to come together. I told my girls, with the help of my husband, what it means to have stage 4 cancer. I said it as simply as I could. Stage 4 means there is no cure. There are medications that can help for a while. There are many of them. But at some point, the cancer will become resistant to those medications. At some point, there won’t be any more medications left.

The wind-up was worse than the delivery. My Mama Bear instincts kicked in, and we all cried, but the honesty felt better. 

Trick #7: Tell your stories

Jack suggested I write down some stories for the events I’ll miss. He said my girls will want to hear the stories of my wedding, my pregnancy, my parenting.

When he first suggested it, I nearly fell into a deep depression that I was sure I’d never get out of. I marched back into my next appointment and told him I was pissed about him recommending such a thing. I wasn’t ready. I let it sit for a while. 

But then I talked to a few friends who have lost their mothers.

Each of them said that they started forgetting their mother’s voice, her mannerisms. One friend said she has a video of her mom filming the dog running around the yard. Her mom was laughing as she narrated the scene. My friend said that she can’t even see her mom in that video, but she can hear her. It’s the only video she has of her mom, and she listens to that clip over and over. 

I started a video journal.

Not goodbye videos. Not heavy things. Just talking about the day and sometimes about cancering. Today, I made a two-minute video while standing in front of one of my kitchen cupboards talking about how ridiculous it is that one cupboard can contain brown sugar, dog treats, five open bags of tortilla chips and napkins in the same space. It’s embarrassing that I have such a cupboard. But I do. I tag each video with who I’m talking to, and if I’m talking about cancer or grief so that they’ll know what to expect.

Maybe I’ll get to those big moments. But thinking about it is making me cry, so not today. 

Trick #8: Finding a way to talk

Talking about cancer is hard.

None of us want to do it. It’s too painful. But I think about thorns that could be left when I’m gone. And I’m trying to pull them while I’m still here.

I asked each of my girls if they were interested in getting a journal so that we can talk about hard things. A journal that we could pass back and forth to each other, for the times when the words are too hard to say out loud.

We have a place for those journals and a code word for when one of us has written in it. Because cancer hasn’t changed our family completely, the code word is pretty much, “I left the journal under your pillow.”  

I wrote the first entry in the journal with the “rules.” 

1. This journal is for you and me only. We’ll never show it to anyone.
2. If you don’t want to talk directly about things we write in this journal, we won’t. These words can stay in here. But if you want to talk more, we can. Totally up to you. 
3. It’s okay if this journal doesn’t end up working out. We’ll use it – or not – as it’s helpful. But let’s try. 
4. You can write anything in here and say it is an absolute truth. And then if you tell me the next day that you didn’t mean any of it, I will know that you didn’t. That’s okay. 
5. Swearing is allowed. Because cancer is an asshole. (I don’t usually swear in front of my kids. But this is adult stuff, so they get to be a little more adult.) 

Trick #9: Keep talking

When I started thinking about writing about my experience in a blog, I first asked my girls if they were okay with it. I wouldn’t do it without their okay.

We talked about the ways writing was healing for me and the importance of connection. We talked through what it could feel like to have people in our community know more about what’s going on in our family. We talked about the possibility of people trying to insert their own beliefs into our experience. We talked about all the possible responses we could anticipate and the reality that we wouldn’t anticipate them all.

We were talking about what it’s like to be in a family that has cancer looming over us at all times; more importantly, we were listening to each other.

After considering it for a while, each of my girls looked at me with intention and without any hesitation, they said, “Do it Mom.” 

My website is my way of processing, but it also gives us a reason to talk about things we don’t want to talk about. Because it hurts to talk about them, and we’d all rather live outside of cancer.

But if we don’t talk now while I’m here, they won’t get the chance to say the things they need to.

Trick #10: Admit and ask

I try to be present. I try to be the me I was before cancer and not a total bummer to be around. 

But cancer bothers me a lot. Like a lot.

I struggle constantly with how much to reveal, how much to let my girls in. I don’t want to tell them how sad I feel at times. I don’t want them to await my test results every month like I do. I want them to be self-absorbed teenagers like they are supposed to be, because I’m supposed to be here to parent them out of that. I asked Jack how to find balance in how much to share.  

Ask them what they want to know and how often was his suggestion.

He said they may not know the answer right away, and they may change their minds. But by asking, they’ll have some control over their experience. They’ll know that their opinions matter.

I asked my girls separately, so their preference could be entirely their own. 

I find no peace in how I’m cancering. I feel no enlightenment. I don’t think there is a right or wrong way to go through this.

All we can do is keep trying to be the best of ourselves, even with such a heavy load to carry.

I’m trying. I’m just going to keep trying. 

Michele’s Bio:  Michele was a scientist and spent 20+ years fighting for clean rivers and waters. It was only after she received a terminal cancer diagnosis in 2016 that she turned her focus to writing about what it means to love and be loved, and how to hold on to yourself when the foundation of a once-familiar life is ever shifting.

Do you have a trick to share for getting through tough times?

Which trick of Michele’s is most meaningful to you?

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Thank you!

#WeWillNotForget