More on the haircut

Being bald (well, close to it) takes some getting used to. I went to my hairdresser about a week ago and got it buzzed off.

Soon, I’m told, I’ll lose even the tiny hairs that make my head feel foreign when I run my fingers over it.

I’d been dreading losing my hair for obvious reasons, but my hairdresser made the haircut fun. (Shout out to Jim at Spa Bliss in Charleston).

He cut my hair first into a mullet and we took a picture before he cut the rest of it off. I expected to be crying, but we mostly laughed.

I can say I’ve had a mullet now

I almost felt guilty asking my hairdresser to cut off my hair. It felt like asking a friend to be a co-conspirator in this disease taking my hair. But I’m glad I had a professional do it.

I’m still getting used to seeing myself without hair. I’ve always had thick hair. I catch my reflection in the mirror without it now and it startles me.

But I don’t mind the shape of my head as much as I thought. When this is over, I think I could wear a pixie cut. As it is now, I look like a Buddhist monk.

I’m still looking for appropriate hats and head covers. I’ve been wearing a light pink baseball cap with the words “girls support girls.” It was a gift from my sweet co-workers. I like it but it doesn’t quiet fit my head.

Me in the hat while holding my nephew.

The headscarves I ordered from Amazon are still in a drawer in my bathroom. I’ve watched a few YouTube videos about tying them but I still don’t feel comfortable with it enough to wear it outside my apartment. Not that I leave much.

I’ve ordered a wig and a ball cap. With wigs, I can play around with colors and hairstyles. Why not?

Hair today, gone tomorrow

It finally happened, almost exactly to the day I read and have been told it would. My hair is starting to come out. I noticed it recently when I ran a brush through and much more hair than usual ended up in the brush.

I thought I would be more emotional about losing my hair. Maybe that will come when I cut it all off. I made an appointment with my hairdresser for this week.

I don’t trust myself to do shave it and having a loved one do it with clippers doesn’t seem kind to them.

It may sound like I’m sad, but I’m really OK. Hair grows back. This is just part of the process. It might be nice not to have to deal with drying and straightening my hair for a few months, especially during the heat of the summer.

It may be longer. I’ve read that it doesn’t grow back immediately after chemo treatment.

I need to round up all the hair ties and hair products lying around my apartment and put them away.

For now, I’ll just try to keep it from shedding everywhere and maybe try to learn how to tie a head scarf and keep it from falling off.

Chemo starts

I’ve had one chemotherapy treatment so far and several more to go.

The actual treatment part wasn’t so bad. The CAMC Cancer Center is nice and quiet. Each patient area has a recliner and a television.

The hospital’s no-visitor policy is still in effect, so I went alone. I didn’t mind.

The nurses are kind. They brought me cookies and were great at distracting me by talking at any chance of pain or discomfort.

I brought a laptop, listened in on a meeting call, responded to emails and did other work.

Chemo is administered through a port the surgeon implanted beneath my skin below my left collarbone. Once the nurses start the IV, the worst part was over.

So far the only side effects to chemo I’ve had are these: I didn’t sleep well in the days after infusion, at times my thinking was fuzzy, and my face broke out really bad. I was expected to be sick to my stomach but the drugs they gave me must have knocked that out.

The prescription steroids they gave me after treatment made it impossible to sleep. The night after treatment, I woke up at 2 a.m. and was awake the entire day after that. It was miserable. The second night was only a little better.

I’d heard of “chemo fog,” or “chemo brain,” the terms cancer patients use for the concentration and thinking issues that chemotherapy gives them. I noticed it, too. Luckily that feeling was temporary.

I expect these are the last few days I’ll have my hair, but it hasn’t started to fall out yet

I’ve washed it more lately because there’s no chance over-washing is going to make it dry and brittle before it falls out. It might as well be clean so I can wear it down while I still have it.

I have a drawer full of head scarves ready to go.

Column: A new appreciation for Mother’s Day

For this week’s column, I wrote about being referred to a fertility specialist before starting chemo to talk about the possibility of having kids after treatment.

Here’s an excerpt:

“My doctor at first tells me he doesn’t know of any reason I couldn’t have a baby after treatment, as long as I waited long enough. But he ultimately refers me to a fertility clinic in North Carolina that will freeze my eggs and store them, just in case I need them later, if I pay them enough.

I Google the average costs for such a service, check my insurance plan (fertility services are not covered) and then quickly decide to let fate determine whether I’ll ever give birth.

Between that and paying for the impending medical bills for cancer treatment, I couldn’t afford to have children, anyway.

Babies or not will become one more decision this disease will make for me. Just like it could ultimately decide if I live or die.

You can read the whole thing here.

We were supposed to be in Tennessee

The calendar app on my phone is an almost painful reminder of all the fun I had planned this year but have had to cancel. Right now, the app tells me, my family was supposed to be on vacation in the Smoky Mountains of Tennessee. It would have been a whole week of hikes and late night porch sitting and probably kitschy shops and tourist attractions with my parents, siblings, nieces and nephews.

Last year, we sat out on the porch of the cabin late into the evening and listened as coyote howls answered the sounds of nearby sirens. We saw black bears. We hiked to the top of Clingman’s Dome for the breathtaking view of the mountains.

But COVID-19 did not care one bit about our travel plans, or that I was really looking forward to playing with my nieces and baby nephew. That I need a few days of waking up to a cup of coffee and a good book on a front porch rocking chair in the mountains. Just like it didn’t care about my best friend’s grad school graduation or the countless weddings it canceled.

The vacation will hopefully be postponed, not completely canceled. I’ll still get to go, pandemic permitting, if I can hold on to enough vacation days (that may be tough while battling cancer).

Postponed vacations and canceled celebrations are just some of the many micro aggressions waged on us by this pandemic. I call them micro because they’re not nearly worth mentioning next to the tens of thousands of deaths COVID-19 caused in this country.

But I also think it’s OK, even mentally healthy, to let ourselves be kind of bummed out about them. Pain and disappointment are relative, after all.

And we’re allowed to feel all of it.

A new opportunity

Picture of the paper and my favorite coffee mug at my newspaper desk circa 2017.

In case you missed it on Facebook or Twitter yesterday, I started a column at the Gazette-Mail, the paper I reported and edited for eight years.

I hope it adds some nuance to the conversation about cancer and the coronavirus and the two of them together. Most of all I hope it’s interesting to some people and maybe an encouragement to some, too.

I really appreciate the newspaper giving me the opportunity to share my story.

I hope you’ll read it and subscribe to the paper. We need journalists now more than ever.

The why questions

“Cancer is no respecter of persons,” my mom said to me recently when she was in town to take me to a doctor’s appointment. She’s certainly right.

I don’t spend a lot of time these days on the “why me?” questions. Honestly, my life until this point has been so free of trauma, sickness and grief that sometimes I wonder how it’s taken this long for something bad to show up.

But I do wonder about the medical reasons and causes for my breast cancer. Until this came along, I thought I was healthy.

I’m a long distance runner (though admittedly a slow one). There’s a rack full of running medals hanging on my wall. My last half marathon was in November. I was looking forward this Labor Day weekend to finally running the hilly course of my town’s 15-miler, the Charleston Distance Run.

At 35, I’m not even old enough that doctors recommend regular mammograms. When I found a lump in my right breast earlier this year and told my gynecologist, he initially told me it was probably just breast tissue, but he referred me on for further tests just to be safe. (I’m so glad he did).

No one in my family has had breast cancer. I can only think of two other family members who had cancer at all. One was a great uncle who died the year before last. The other was my grandfather, a coal miner and longtime smoke who had both black lung and lung cancer. The latter probably hardly had to do with genetics.

After my diagnosis, I was tested for the BRCA1 and BRCA2 gene mutations that increase the changes of cancer. Both were negative.

Then there’s the type of breast cancer that I have: triple negative. That means the tumor isn’t fueled by the hormones estrogen or progesterone or the HER2 protein. Triple negative breast cancers account for 10 to 20 percent of all breast cancer diagnoses, according to the Susan G. Komen Breast Cancer Foundation. They have a higher rate among young women and black women.

Triple negative cancer is more difficult to treat and has poorer prognosis than other types within the first years of treatment because there are fewer drugs that target it. I’m trying not to dwell on that last part.

But it’s really of no real use to ponder why. I have breast cancer. The why makes no difference in the end.

A happy memory

I want to share a happy memory with you. I figure, if you’re following a blog about having cancer long enough, you’ll read some painful things. I want to remember good things, too.

It was earlier this spring, March 1. My boyfriend and I had gotten up before daylight on a Sunday morning, dressed in nice clothes, and driven three hours to a Cincinnati church to see my nephew be baptized.

Monty was born in November to my brother Daniel and sister-in-law Gabby. He has big, round cheeks that make him look Daniel in pictures of him from that age.

Dressed in his tiny, blue button down sweater and camo pants, he’s already more hip than I’ll ever be.

The church is an old building that’s been remodeled. A giant mobile of God’s eyes (crafts from the congregation’s children, I’m told) hang from the wooden beams that line the church’s high ceilings. Purple light illuminates a dark wooden altar at the front of the church.

It takes both my arms to hold Monty, whom I’ve been handed before his big moment during the service. As we sing hymns, I shift his weight from my hip to my shoulder, marveling at how much he’s grown since I’d seen him last at Christmas.

When the baby gets fussy or my arms need a break, I pass him off to my mother at my right. She and dad have made the trip from Ashland.

By this time, a virus that originated in Wuhan, China had already made its way to the United States, claiming in Washington state its first of tens of thousands American lives.

Stay-at-home orders to stop the disease’s spread will keep me away from loved ones and church services for a while.

By this time, I already had cancer in a lump I’d discovered in my right breast.

But I don’t know any of that yet.

What I do know is that I’m sitting in a wooden pew with people I love, singing the church songs I sang as a child.

Whatever happens, I’ll keep this memory, too.

C is for chemo

I’ve been trying to process my treatment plan since I sat in the oncologist’s office recently.

Chemotherapy followed by radiation.

In the back of my mind, I’ve been hoping, assuming maybe, that because my cancer is early stage and my surgeon got all of the tumor out, my treatment might not even involve chemotherapy. I was wrong.

The doctor said I have “triple negative,” breast cancer, which means it tests negative for estrogen receptors, progesterone receptors, and excess HER2 protein. I’m not exactly sure what all that means.

But, the way you treat a cancer like that, the doctor said, is like paying a mortgage. You make a big down payment with a lot of treatment early.

I’m nervous about having a weakened immune system during all this, but the doctor said I’ll also have a drug to help with that.

I am awash in reading material from the hospital about the drugs I’ll be taking. The list of possible side effects of chemotherapy medication is daunting, even without COVID-19.

hair loss
constipation and/or diarrhea
nail and skin color change
fertility problems
easy bruising and bleeding

The list goes on.

But I’ve been told every body reacts differently to chemo. I even heard a story of one woman who continued to run five miles a day while on chemo.

We’ll have to wait and see.

A little help + some good news

Cats are awful nurses but OK company.

I’m a week out from surgery, and I’ve been surprised at how much it knocked me out.

The “outpatient” in “outpatient surgery” to remove the tumor may have deceived me into thinking it would be a minor occurrence.

At the beginning of the week, I was telling friends and family not to worry, I didn’t need anything. I am strong. I’m independent. I’ll be OK.

When my sister offered to cook me meals and drive them two hours down Interstate 79 from Fairmont to me, I said yes. People want to help, I thought. It makes them feel better when bad things like cancer happen. I should let them.

My mom stayed the first 24 hours with me after the operation (plus she bought me groceries and cleaned the whole apartment, because moms are awesome). After she went home, my boyfriend checked on me morning, noon and night, warmed up meals, kept me company, and even helped change the gauze around my JP drain. (How’s that to test a relationship of less than a year?)

I am glad she came. I’m glad he was there and my sister thought to bring me food. Turns out, I definitely did and do need help. I’m not sure how I would have made it through without it.

For the unfamiliar, a JP drain is a tube that’s going into my side just below the incision site. It’s attached to a sort of ball that’s collecting the fluid that’s gathering in near the incision. (I’m sorry if you’re squeamish and that grosses you out, but, well, I’m squeamish too. Imagine how I must feel when I have to drain it and measure the fluid 2 to 3 times a day.)

I’m still waiting for the surgeon’s clearance to remove the drain, but I’m not in pain. I’ve been out on some walks after work over the last couple of days. I’m feeling much better, except that my incision site itches and the sharp plastic on this drain keeps poking me.

I think when the doctor calls and finally sets the appointment to remove the drain, I may put on a nice dress and break out one of the five remaining bottles of wine some friends/ former colleagues gave me (thanks Greg and Dawn), just to celebrate. I hate it that much.

But despite the drain, there is some good news: my surgeon says he’s confident he removed all of the tumor, and its “margins are clear,” which I take to mean there’s no cancer left. There was cancer in one of my lymph nodes, but not in the surrounding ones, which I’m told means its unlikely that it’s gotten anywhere else in my body.

Also, my genetics test has apparently come back negative for the genes that cause breast cancer. Not having the genes means there’s less of a chance that cancer will reoccur. Some women who test positive choose mastectomies just so they won’t have to worry about getting breast cancer again down the road.

I’m not out of the woods yet, though. My surgeon is referring me to an oncologist. He said that at some point chemotherapy would be recommended.

I’m trying to mentally prepare myself.