Here’s an update for you: I’m working on changing the subject of this blog to focus on my efforts at cutting out plastic and going zero waste.
When I started this blog in 2020, I was facing a new breast cancer diagnosis in the middle of a global pandemic. Now, two and a half years later, the world is moving on from paying attention to COVID-19, and I am long done with treatment for breast cancer. Going zero waste and cutting out plastic have been a quiet ambition of mine.
Why? Because I can’t stand the thought of my plastic water bottles, straws and other trashing making its way down rivers and into oceans and forming country-sized mounds or getting into the mouths of whales and turtles, killing them.
I hate that something like a bottle of water takes 20 minutes to consume but lasts forever in the ocean or a landfill.
I’ve started cutting out plastic in some ways, but there’s much more I can do.
I think having the accountability of writing about my experience weekly might help push me in the right direction. And bonus — I get a new subject to write about. It’s a win-win for everyone.
My loosely formed plan is to come up with some sort of weekly or monthly challenge for myself and then write about it at least once a week here.
Whether you followed me to learn about breast cancer or you know me in real life, I hope you’ll stay tuned and follow me in a new endeavor.
I froze when I recognized the voice on the phone line.
“This is Dr. Gallimore,” she said. “I’m calling with the results of your MRI.”
I am two years out from a diagnosis of stage 2, triple negative breast cancer. After being diagnosed in March 2020, I underwent a lumpectomy, about six months of chemotherapy and then radiation treatment.
Thanks to all that, the cancer is gone.
Many breast cancer survivors are put on hormone therapies longterm but triple negative breast cancer does not have hormone receptors, so those drugs aren’t helpful for me.
All that’s left for me, medically speaking, are these frequent tests and scans to make sure the cancer is staying gone.
I have blood work done every few months when I see my oncologist. I have a mammogram and a breast MRI once a year.
I had undergone the MRI recently and my new doctor was calling with results.
In an instant after hearing her voice, my mind combed through the tangle of possible bad news she could be calling to tell me.
The cancer is back.
It’s in both breasts now.
Worse, it’s spread to my bones, my brain, lungs.
Stage 4.
Metastatic.
“Everything looks good,” she said instead. Her words brought me back to reality.
“Oh. Good,” I said, finally breathing.
If you’ve ever wondered what life is like after cancer treatment, this is one aspect of what it’s like.
Sitting in the medical office waiting room before getting an MRI recently.
I am doing well.
The neuropathy that I felt in the bottoms of my feet has gone. My hair is growing back, although slower than I’d like. It’s short and curly and I still don’t know quite what to do with it.
The exhaustion from radiation treatment is gone. So is the soreness that plagued my legs in the days after treatment.
I generally don’t think about cancer. I don’t worry much about it returning. Even the tests and scans have become routine to me.
And then, like when the doctor called, I do. I’m reminded of how quickly my life could change in an instant with the delivery of bad news.
Cancer also comes up sometimes when I’m thinking about my career and life goals, however simple they may be.
I’d like to run the Charleston Distance Run.
One day I want to write a novel or a memoir.
I want to adopt a dog.
I want to travel the world.
When my dreams are too far into the future or they rely too much on physical health, cancer is always the caveat. It’s always the wildcard that could throw everything off in an instant.
If the cancer doesn’t return this year, I’d like to run the Distance Run.
If I live long enough, I’d like to write a novel or a memoir.
If I’m healthy, I’d like to adopt a dog.
If
If
If.
But I realize that it’s not just those of us who have had cancer — all of us live with the if questions about life. I could get hit by a bus tomorrow. There are a million ways I could die before the cancer ever has a chance to come back.
A little more than two months after the end of my chemotherapy treatments for breast cancer, this week I’ve started to run again. I had tried earlier, only to stop because my legs and body were still so sore, a lingering effect from treatments.
Fortunately, the soreness is starting to fade. Even the neuropathy has lessened. So I put on my old running shoes and some layers to protect me from the cold and hit the pavement.
I got a little more than 2 miles in on Wednesday and Thursday afternoons. I walked frequently, but I expected that. I’m really slow, but to be honest I’ve always been slow. I’m really out of shape after not running basically all year.
It’s been nice to get back to running and a sense of normalcy in my life. I had so missed running. Now I just need new running shoes and cold weather gear. I have about as much hair as someone with a buzzcut, so my head gets cold out there.
I’m looking forward to running races in 2021. The prospect of a COVID-19 vaccine being approved soon has me so hopeful.
When the Charleston Distance Run was canceled this year because of COVID-19, they deferred my registration to next year, so I’m all signed up to run 15 miles through Charleston this Labor Day weekend. I hope that enough people will be vaccinated by then and cases will have dropped enough that races will go on. It would be nice to celebrate the end of cancer treatment with a race in a fun city. We’ll see.
After my last column was published in the Gazette-Mail last Sunday, I got several emails this week from readers congratulating me on the end of cancer treatment. I will miss writing the column. It was always so nice hearing from readers. But I’m also glad to move on from being known as the woman with cancer in the paper.
Hopefully I’ll have more exciting things to write about here.
Note: This column, published Sunday, is the last I’ll write about treatment for the Gazette-Mail. I plan on continuing to write updates here.
As I left the CAMC Cancer Center early Monday morning, I snapped a picture of the parking lot and sky outside. I wanted to remember how I felt walking out those doors after my last radiation treatment.
I carried with me a sheet of paper from the Radiation Oncology staff certifying that I had finished my prescribed course of treatment with “courage, determination and good nature.”
This is the last cancer column you’ll read from me. I am officially done with breast cancer treatment. Even now after 28 rounds, my skin hasn’t had too bad a reaction to radiation. It’s red and itches like crazy, but there are no blisters. I’ve been treating it with a mixture of hydrocortisone cream and Aquaphor. I continue to feel tired, as I expected to.
From diagnosis to surgery to chemotherapy and radiation, these past eight months have been a fight. A global pandemic has only made it more difficult. In some ways, I’m not the person I was before March. I don’t look or feel like her. I’ve still got a ways to go until I’m completely recovered. I’ll always be onguard for signs the cancer has returned.
But I realize how lucky I am to get this far. Hang around a cancer center for too long and you’ll hear stories of people who are not as fortunate as I have been. I think about them often.If there’s one thing this year has taught me, it’s that I can’t take my life and health for granted. I’m grateful that I caught the tumor in my breast when I did. I’m grateful for the doctors and nurses who treated me. And for the family members and friends who have supported me.
Throughout treatment, writing this column has been an outlet for me. It’s been a way for me to process what I’m going through. At times I’ve felt like my readers have humored me by continuing to follow along. It’s not always been exciting, and I appreciate everyone who has trekked with me over these weeks.
Thank you to everyone who has reached out after reading with words of encouragement. You have certainly made this time in my life a little bit easier.
I hope my story is a reminder to you not to skip out on those doctor’s visits and cancer screenings. I hope it teaches you the importance of knowing your body. At 35, I didn’t even have regular mammograms before I was diagnosed. Had I not noticed the lump myself, I could not have had the mammogram and biopsy that ultimately confirmed my cancer. My cancer fight could have faced an entirely different outcome had I been diagnosed later.
If you’re caring for someone with cancer, I hope these glimpses into my life have helped you understand more about what your loved one is going through. If, God forbid, you ever get cancer or face another life-threatening illness, I hope reading this has helped you believe that if I can get through treatment, you can too.
I’d like to thank the Gazette-Mail for giving me the opportunity to write about my experience here. Despite the circumstances, it’s been a great feeling having my byline back in the newspaper each week. I had missed it so much.
I hope you’ll continue to follow my writing on my blog and that one day I have another chance to write for you, next time about something other than cancer.
In the movies and comic books, radiation gives mortal men superpowers. Peter Parker got bitten by a radioactive spider and became Spiderman. Gamma Radiation made Bruce Banner into The Hulk.
I am nearly to the end of my 28 radiation treatments, and so far all it’s given me is red, irritated skin and the ability to nap before bed and still sleep soundly through the night.
This week, for the first time since radiation started, I’ve started to feel the side effects. I was expecting this. My doctor told me I wouldn’t feel anything for the first couple of weeks, and that I would feel it more toward the end of my treatment.
Right on schedule, my skin has become red, not quite like a sunburn. But this is breast cancer treatment, and I’ve never felt a sunburn on this part of my body. (If you’re taking notes for you or someone you love, Aquaphor works wonders).
My skin’s reaction is actually pretty good to others. Honestly, it doesn’t hurt that much. Radiation can cause anything from red skin to flaking and even blistering.
I’ve also noticed I’m more tired than usual. A couple of times I’ve gotten home from work and fallen asleep on the couch not long after. I usually wake up from the nap and go right to bed.
The doctor compared radiation treatment to spending a day out in the sun. In both situations, radiation (from the sun or a machine in the Cancer Center) makes you tired and your skin burns.
I’ve also been nauseous at times this week. My doctor told me that can be an indirect side effect of the treatment.
Overall, though, I have much preferred radiation treatment to chemotherapy. It’s been a breeze compared to the nausea, sleepless nights and other side effects that chemotherapy brought with it. Everyone is different, though. I’ve heard from people who have said that radiation was much worse for them than chemotherapy.
I expect the sunburn feeling and the exhaustion to intensify this week as treatment continues. As I write this, I have three radiation treatments left to go before cancer treatment is officially done.
The hardest part of radiation has been getting up early and being there five days a week. Even that isn’t so bad. I’ve found that living in Charleston, just across the river from the CAMC Cancer Center, has made my experience easier than most. Cancer patients drive from other counties to get here. My 10-minute drive is a piece of cake.
With cancer treatment, there’s always a new side effect to discover. This week, it was my eyes. I got an eye exam for the first time since I was diagnosed with breast cancer back in March. I’ve always been nearsighted, but now, nearly two months after finishing chemotherapy, my vision is worse. I needed a stronger prescription. If this means anything to you (it didn’t to me until I Googled “how to read a glasses prescription”), my right eye went from -1.25 at my appointment last year to -1.75 this week. My left eye went from -1.00 last year to -2.00 this time. The change was significant enough that my eye doctor and the woman at the counter in his office made remarks about it. Otherwise, my eyes are perfectly healthy, the doctor said. I was at first concerned that vision change might be a temporary side effect of the cancer drugs. Some of the chemotherapy fact sheets list blurred vision as a possible side effect of Taxol. The last thing I’d want to do is invest in new eyeglasses and contact lenses and then find out later that my eyesight change is a temporary side effect. The day after my eye exam, I called my eye doctor’s office back and asked a medical technician about it. He assured me that my eyesight may improve a little eventually but it’s likely permanent. Apparently, chemotherapy changes the eyes. (Incidentally, so does being pregnant or having diabetes). I checked with the ladies in the Facebook group for breast cancer patients — some of them said they had experienced vision changes after chemotherapy, too. One woman advised me not to bother with an eye exam until my treatment is over. A change in my eyeglasses prescription is a small thing, to be sure. But it’s also another reminder of how much chemotherapy affects the body. When I started chemotherapy treatment back in May, I never would have guessed eyesight would be an issue. It’s always something. I had hoped that once it was over, life and my body would go back to the way it was before treatment. But I’m not there yet. I’m still finding out about all the ways it has affected me. On another note, something that chemotherapy took from me is slowly making its comeback: my eyebrows and my hair. I never knew I would miss my eyebrows so much until they were mostly gone. Now that they’re growing back, I look like more of a human. As for my hair, it’s still peach fuzz, but everyday there’s more of it. It’s fine and soft and there’s not enough of it yet for me to stop wearing wigs. But soon there will be. I’m looking forward to that.
I wrote recently about getting back into running for the first time since I was diagnosed with cancer in March. To be honest, I have not been keeping up with it regularly.
I have more than one excuse.
One is that radiation starts early on weekdays, and I don’t want to get up before then to run. Then when I get home from work in the afternoons, it’s really easy to talk myself out of going.
But the main reason is that I usually don’t feel like it. My legs don’t feel like it. They’re still sore. It’s not all the time, but it’s enough to defer me from running. No one told me this would be a lingering side effect of chemotherapy, but I’m convinced it is.
I sometimes forget about being sore. My legs don’t hurt when I’m sitting still or lying down. Then I start to move and my legs just hurt. They’re stiff. To see me stand up and try to walk, you might think I’m much older than I am. That’s usually when I’m reminded that I’m very much still getting over chemotherapy treatments.
Despite using the ice gloves and mittens some, I did develop some neuropathy from chemotherapy, too. (That’s not to say cryotherapy didn’t help. I bet it would have worked better had I been able to keep them on the entire time. The cold was too much for me.) I feel a numbness in the bottoms of my feet. It makes running a bit uncomfortable.
A friend of mine who’s been through cancer treatment told me that I will eventually feel like myself, but it might be a few years, not months.
I tell you this because a few cancer survivors and caretakers have reached and told me they read my column. If they were to measure their recovery or that of a loved one by what I’m writing about, I’d hate for them to think I’m back to running full speed without any issues a month after chemo. I’m not. My mind wants to. I miss seeing Charleston from the 35th street bridge as I’m running across it.
And I haven’t given up on running. I have hopes that I’ll eventually get back to full speed. I know I will. To be honest, I was never that fast a runner anyway.
In other news, as of this week my radiation treatments are halfway through. Because they’re five days a week, they really have flown by. As I wrote last time, I still haven’t noticed any reaction to the treatments.
I should be finished with them — and cancer treatment altogether– in a little more than two weeks. Can’t wait until I can officially call myself cancer a survivor rather than a patient.
Lying in the hospital bed before I was taken back to surgery, I had the briefest of second thoughts about removing the port that had been implanted below my collar bone since just before treatment started. The port is what the oncology nurses used to administer chemotherapy and draw blood for tests. Before my cancer treatment started, I was given a choice: my veins or a port. The nurses could put an IV in my veins each time they administered chemo, or the surgeon could implant the chemo port into a vein in my chest and have chemo administered through it. I chose the port. Now, more than a month after chemotherapy ended, I was finally going to be rid of it. I’ve noticed that toward the end of cancer treatment, if it’s going well, there are several milestones. That day I had reached another one.
And while I had been happy about having the port removed, I started to get nervous. What if the cancer comes back? What if I have it removed only to find another tumor somewhere? I keep hearing (mostly from fellow patients) that triple negative breast cancer is aggressive. Part of me is scared that I’ll have to have another port, and go through more chemotherapy. I can’t remember exactly what the surgeon said when I told him about my doubts. At a previous appointment, when I said the word “recurrence,” he smacked my hand. Even if, down the road, the cancer returns, it’s good to have the foreign object out of my body for now, he told me. I woke up after a quick outpatient surgery that day with no port. A bandage covered the making of what will soon be a scar on the left side of my chest. Goodbye and good riddance. … My radiation treatments are going OK so far. I haven’t noticed any skin reaction or exhaustion, which are the two things I was told to expect. Any tiredness I do feel I attribute to getting up earlier than usual. My treatments have me up and at the Cancer Center an hour before work starts. I can’t complain about that; I asked them for early time slots. Treatments are five days a week. The process starts with changing into a hospital gown. Then I’m taken back to a room with a linear accelerator — the machine that delivers the radiation. The worst part may be lying on an uncomfortable bench with my arms above my head while the machinery swirls around me, occasionally beeping. It may also be the country music the therapists play. The treatments themselves are quick. I’m usually done in time to go get coffee on my way to work.
When I came back to my office earlier this month for the first time since March, I found a bright pink bulletin board with pictures of my face, printouts of this column and information about breast cancer. October is Breast Cancer Awareness month and I am literally the face of breast cancer within the building. Later, in another really sweet gesture, the Kanawha County Commission recognized me for continuing to work while undergoing cancer treatment in a proclamation for Breast Cancer Awareness month. Then I was interviewed for a local health podcast that focused on the disease for this month.
The bulletin board at work.
But believe it or not, when I started this column and my blog, my goal was not to raise awareness of breast cancer. Selfishly, I started writing as a way to cope with my diagnosis and treatment. All I’ve ever wanted to do is write. So when life gave me breast cancer, that’s what I wrote about. If the column and blog increased people’s awareness that women in their 30s get breast cancer, or if it encouraged women to get a mammogram, that’s amazing. I’m glad to have been a part of that. Generally in years past, I’ve been annoyed at some of the things done in the name of breast cancer awareness. It deserves attention, to be sure. I’m willing to bet that raising awareness of breast cancer over the years has increased screening rates and saved countless lives. The bulletin board, proclamation and podcast are all great ways of raising awareness. But some of the messages put on t-shirts associated with breast cancer awareness are just crass. The sayings “Save Second Base,” or “Save the Tatas,” really annoy me. You will never catch me in a t-shirt that says “Cancer touched my boobs, so I kicked its ass.” I do appreciate the sentiment, though. Then there’s October 13, No Bra Day. Apparently on this day women go without bras as a way to raise awareness of the disease. The point of awareness is to encourage women to get their mammograms or do self exams. So what does going without a bra for a day do to encourage women to get a mammogram? Nothing on its own. This month, if you’re looking for a way to increase Breast Cancer Awareness and save lives, before you commit to going without underwear for a day, encourage your sisters or girlfriends to schedule their annual mammograms. If you can, consider giving to an organization like the WVU Cancer Institute, which operates Bonnie’s Bus, a mobile mammography clinic that provides screenings and education to women. Or give to the American Cancer Society, which among other things funds cancer research. The color pink is a part of breast cancer awareness month that I’ll forever see differently after this year. Pink used to bring to mind something soft and cute. Something pretty or sweet. But none of those describes having breast cancer. These days, I don’t feel cute at all. There’s nothing cute about having a head with just peach fuzz a few weeks after ending chemotherapy. It’s not cute having half of each eyebrow and just a few eyelashes. Nothing was pretty about having four rounds of Adriamycin and Cytoxan that made me nauseated, or the 12 rounds of Taxol that’s turned my finger nails a yellowish color. It’s not cute having a body that’s still sore a month after chemotherapy. A woman’s body after a double mastectomy is not cute. There’s nothing pretty about the medical debt that people accumulate while battling cancer. Having cancer isn’t cute or sweet. It’s been incredibly hard sometimes. It takes courage to get a life-threatening diagnosis and get up and go to work the next day. It takes physical strength to endure the chemotherapy regime. It’s not easy to feel peoples’ stares when you’re out in public without a wig or a head covering. Breast cancer pink isn’t soft or sweet. It’s brave and strong. It’s powerful. I hope my sisters wear it proudly.
This week, for the first time since I was diagnosed with breast cancer in March, I pulled on my running shoes, put a knit cap over my bald head and hit Kanawha Boulevard. As you might imagine, my first run in seven months was slow and short. I took a lot of walking breaks. The next day, my second run was like that, too. My friend and running partner went with me for the second run. Naturally she’s in better shape than I am right now. I felt bad for slowing her down. We only got a little ways down the Boulevard when my legs started to burn and I said I needed to stop. “We can slow down,” she said. Actually we couldn’t slow down by much. We were already crawling thanks to me. We got a little more than two miles in that day. No matter my speed and distance, it felt so good to finally be out there again. And I’m grateful for a friend who will run with me and cheer me on, even when I slow her down. I had been meaning to start running again. I’ve been told that staying active will help me get through radiation treatments without many problems. Plus, between the changing colors of the trees and the comfortable temperatures, October is a great time to run. But I’ve had a lot of excuses not to start running. My legs have been so sore lately. I think it’s a lingering side effect of chemotherapy. Even when I haven’t walked or otherwise exercised much, they feel like I’ve run 10 miles. It’s weird because the rest of my body feels fine. My oncologist didn’t seem too concerned about it once he asked me about my symptoms and determined it probably wasn’t a blood clot. A few women in the breast cancer Facebook group said they’d also had leg soreness and that exercise had helped. My bald head is another thing that was holding me back from running. It’s fairer to say my attitude about my bald head held me back. I’ve been self conscious about it. I wanted to wait to run until I had enough hair to cover my head. I’m three weeks out of chemo, and while my hair is slow starting to grow, right now I have nothing but peach fuzz to show for it. I wear a wig to work, but i obviously can’t wear one while I’m running. I thought running while bald might make other people uncomfortable. Overall I’m feeling much better but with a bald head, I still look sick. I still look like a cancer patient. But for whatever reason that rainy Sunday, I decided to go running. I took the lower level of the Boulevard’s walkway, and wore a hat, but otherwise tried to get over caring what I looked like. I expect that my runs will be slow and short for a while, but I’m so glad to be running at all.
My running partner, Carlee, and I at the finish of a half marathon a couple years ago. .
While getting set up for CT scan Friday morning, I tried to reason with the man running the machine. I was back at the CAMC Cancer Center, this time in the radiation oncology department for a preliminary appointment. In a few days, my radiation treatment will start. In addition to the scan, I was there to get three tiny tattoos — markers in the center of my chest and on my sides — that will somehow factor into positioning me for those treatments. Getting tattooed did not sound pleasant. “Can’t you use permanent markers instead?” I asked. “You could put tape over them so they don’t come off, and put more ink on whenever they start to fade.” No. Even permanent markers come off, and these three markers needed to be permanent. But he assured me that it wouldn’t hurt. I didn’t believe him. I had already asked another of my health care providers — a breast cancer survivor — and she said it would. I expected the worst. I thought he would come at me with a tattoo machine. But once the scan was over and the time came for him to put the markers on, he took out a lancet, not a tattoo machine. I only felt a tiny pinch for each of the markers. It was over in no time, and with minimal pain. “Was that it?!” I said. That was it. I had dreaded this appointment since I was told about it five days before. All week, I told everyone who asked about treatment that I had to have three tattoos and that it would hurt. Once again, I had been built up something in my mind and made it worse than it actually was. I’ve decided that with cancer treatment, it’s difficult to tell what’s going to be hurt and what won’t. It’s hard to determine what I should dread and what I shouldn’t. As I’m writing this, I have about 10 days before my first radiation treatment. I’ll have 28 treatments total. I’ll go in for them five days a week. The appointments are quick — maybe 15 or 20 minutes each. The doctor told me that for the first three or four weeks of treatment, I may not have any sort of reaction to the radiation. By the fifth week, though, my skin may dry or flakey like the start of a sunburn. Some people even have blistering. The good news is that skin heals quickly from radiation. Exhaustion is the other side effect I’m likely to experience on radiation. The doctor said it’s similar to the tiredness you feel when you’ve been out on the beach in the sun all day. Some women I’ve talked to about radiation say they sleep 18 hours a day during treatment. Every body is different. I’ll just have to wait and see how mine takes it.
My last day of chemotherapy was a celebration. At some cancer centers, a patient finishing either chemotherapy or radiation therapy rings a bell during a ceremony that signifies the end of their treatment. I’d seen videos of patients ringing the bell while cheering hospital staff look on. There are no bell-ringing ceremonies at the CAMC Cancer Center. I asked one of the nurses once and was told that’s because not all patients make it to the end of their treatment to ring the bell. I’ve thought about that a lot these past few days. I knew not to expect a bell ceremony, so I brought a party with me to my appointment Friday morning. Well, more specifically, I brought cupcakes. It was my very small way of thanking the oncology nurses for all the care they’d given me during my treatment. Doctors diagnose and make decisions about treatment plans, but a good nurse can make the difference between a good day and a bad day of treatment. They’re the ones who drew blood for my labs each week and hooked me up to the chemotherapy drugs. They answered my questions and brought me a warm blanket and an occasional snack to keep me comfortable. Admittedly, 9:30 a.m. is kind of early for a dessert, but they still seemed to enjoy them. My treatment that Friday morning went smoothly.
Two of my coworkers showed up at the Cancer Center after my treatment to surprise me with posters, balloons and roses. They had conspired with my mother, who came in from Ashland, Kentucky every week to take me to treatment. When I texted my mom that I was done with treatment, she stalled to give them enough time to get from the health department downtown to the Cancer Center in Kanawha City. I stood outside waiting for maybe 20 minutes, rather annoyed that she wasn’t there yet, even though I had told her when I’d be done. Before too long, there came Julie and Kandy in their face masks holding big blue signs that read “We love Lorithebrave,” (a reference to a social media name for myself) a bunch of helium balloons and a vase of white, purple and pink roses.
It was such a sweet surprise. Because I’m working from home, I hadn’t seen them in person in a while. It was so good to visit with them. My last surprise of the day was from a good friend who after work brought over a cheesecake with a picture on it of late actress Rue McClanahan, who played Blanche Devereaux on “The Golden Girls.”
The Golden Girls helped me get through chemotherapy treatment. Many nights I’d fallen asleep on my couch watching and laughing at the antics of Rose, Blanche, Dorothy and Sophia. I’d seen many of the episodes already but I rewatched the entire series. The cake also had an altered version of one of Devereaux’s famous lines from the show, “Eat dirt and die, chemo.” My friend also brought over a 6-pack of one of my favorite beers. I had abstained from any alcohol since chemo started because I read it can interfere with the drugs and cause their side effects to be worse. My day was full of celebrations because there was so much to celebrate. I had finally made it through five months –16 rounds — of chemotherapy. I was one big step closer to being done with cancer treatment, to calling myself a survivor rather than a patient. Chemotherapy took my hair, my energy and many nights my sleep. It made me anemic. Some days, early on in treatment, I felt so bad I cried. Other days just moving from my bedroom to the couch to work was an accomplishment. I thought this day would never come, and now it finally had.
Note: I’ve decided to start posting my column here after it’s been published in the paper. This one ran Sunday, Sept. 20.
The nurse read my labs, furrowed his eyebrows and looked back at me. “Your immune system is down this week,” he said. “It’s not a problem, it’s just at the lowest it’s been during your treatment.” I was at the CAMC Cancer Center that morning for my penultimate chemotherapy treatment. I was so close to being done that I could practically feel the hair regrowing on my bald head. Up until that point, we’d been talking about our plans for the weekend. My friend and I were planning to go to a farm in Putnam County and take photos in a field of sunflowers. This immune system stuff wasn’t really surprising news. If you know anything at all about chemotherapy, it’s that it weakens your immune system. Infections and viruses like the flu can be more serious in cancer patients, so even those who aren’t going through chemotherapy during a global pandemic are told to avoid sick people and take precautions. But it was news. While my red blood cells had been done previously, before then, none of my previous weekly lab tests had revealed any issues with my immune system. You might think having a weakened immune system in the middle of a pandemic would scare me, but it didn’t. The thing about the novel coronavirus pandemic is that it’s already causing me to do everything I can do to avoid catching a disease I’m not immune to. When I’m not holed up in my apartment (I am most of the time), I’m wearing a mask, avoiding crowds, staying at least six feet away from other people and washing my hands frequently. The COVID-19 pandemic has taught me well what to do when your immunity is down.
Me in the canoe at Beech Fork
So I didn’t change my weekend plans, though the rain on Sunday altered them a little. My friend and I decided to go to Beech Fork State Park in Barboursville Saturday. We paid $1.50 to feed the carp and then rented a canoe. It was a nice afternoon with plenty of social distance. It was so good to feel well and to be out doing something different for the first time in a while. The sunflower field closed because of rain on Sunday, so we didn’t get to go. Speaking of things closing, did I mention I’m almost done with chemotherapy? As I’m writing this, I’m three days away from going in for my last treatment. If you’re reading this on Sunday, I’m already done. This chemotherapy drug, Taxol, has been mild on me compared to the previous regime of Adriamycin and Cytoxan. The worst part for me was anemia, and that seems to have gotten better on its own. Many patients get neuropathy from Taxol. My fingertips have started to feel kind of funny in the last couple of weeks, which makes me think it might be the start of neuropathy, but it’s not been bad. Despite the mild side effects, I’m ecstatic to have this part of cancer treatment behind me. All week I’ve been thinking of how to celebrate after work on Friday. I’m looking forward to growing out my hair and eventually getting back to running. This won’t be the end of cancer treatment; I’ll have radiation next. Stay tuned to hear how I deal with the burns and exhaustion I’ve heard are so common with that form of treatment. On another note, thank you to everyone who has donated to my online fundraiser for the American Cancer Society. It means a lot to me to be able to help raise money that benefits cancer research and supports programs for other patients.
No one told me undergoing cancer treatment would turn me into a walking pharmacy.
I keep a bag now that has the remedies for most of the common side effects to chemotherapy treatment and the drugs that come along with it. (Kind of fitting that I’m using a giveaway bag from an Association of Health Care Journalists conference).
Most important are the prescription anti-nausea medications I take after each round of chemo. I also keep saltines and ginger chews in there just to help.
Can’t sleep? Here’s an over-the-counter sleep aid, Melatonin, and a container of ZZZQuil gummies. (At night, I also turn on an essential oil diffuser with lavender oil to help with this.)
Have a splitting headache (a side effect of the anti-nausea medication prescribed to me by my doctors)? I’ve got ibuprofen and Aleve. If one of them doesn’t work (and it probably won’t) check the freezer for an ice pack and try to sleep (even if it’s 6 p.m.)
There’s tea tree oil that I hope will keep my fingernails and toenails from turning black and falling off. So far they just kind of hurt and keep me from using my fingernails for things that might cause them any stress.
I keep sunscreen in there, too. Chemotherapy, radiation and surgery scars all increase sensitivity to the sun, so I’m more careful this year to apply it when I’m out.
Constipation? Diarrhea? Yeah, got stuff for them both.
I’m grateful for the drugs that are helping me through this, but looking forward to a time when I won’t need them.
Just 10 more rounds of chemotherapy left to go. I can do this.
Note: I promise not to do this a lot, but I wanted to share the column I wrote for today’s Gazette-Mail, just in case you missed it. I liked this one.
I’ve run the 5K portion of the Charleston Distance Run most years for the past few years, and 2020 was going to be the year I finally ran the entire 15 miles. I’ve run five half marathons and countless other 5K races. But until this year, I’d never got up the nerve to sign up for the full Distance Run. Besides being 15 miles, it takes on Labor Day weekend. If that’s not actually the hottest part of the summer, it sure feels like it. It could be because by late August or early September, I’m sick of the heat. I’ve seen other runners sweating hard on Kanawha Boulevard in mid July in preparation for the race and thought to myself how smart I’ve been to train for races that take place in December or November. I really like avoiding heat stroke. Then there’s the legendary Capital Punishment Hill. That doesn’t seem fun no water what time of year it is. At the same time, I’ve so wanted to do this race. There’s something about it that makes me nostalgic. Maybe it’s because it seems like every Charleston runner has a story about running it. Maybe it’s the way the city comes out to cheer on the participants. Maybe it’s the spaghetti dinner. I don’t know.
My uncle would run it when I was a kid. I remember hearing that he’d trained for it by running Route 21 from Sissonville to Charleston. That seems like a crazy feat when you’re a kid.
My uncle Gary and I after the 2019 Distance Run.
In the past few years, he and I have started the 5K portion of the race together. I’m a slower runner, so despite our age difference, he finishes first. (My grandmother jokes that if I keep running, one day I’ll beat him). When I got the news that the Distance Run is cancelled for this year, I of course was not surprised. Even the Boston Marathon was canceled for this year. The organizers made the right move. I would not have been able to run the race this year anyway because of cancer treatment. I started out the year training for training for the race by running Carriage Trail’s hill. I think I had worked my way up to running seven miles. But I have not run since March when I was diagnosed, unfortunately. I’m to a point in chemotherapy treatment where I get fatigued, even though I don’t exercise much. I walked a block in the heat Sunday morning and it was enough to make me sick. But I will run again. The race organizers gave us the option of having a refund for the registration fee or deferring it to next year. I chose to defer mine until next year. It’s my way of believing that I’ll recover from this. That I’ll get my life back. That cancer won’t have the final say. When I was a reporter, I wrote a story about a woman who ran the 2015 Charleston Distance Run after finishing lung cancer treatment. She had run it before she was diagnosed and had a terrible time with it. When her cancer went into remission, she returned to conquer it. I have to believe that I will, too.
I’ve had my last chemo treatment with the drugs with Adriamycin and Cytoxan. The former is referred to as the “Red Devil,” both for its bright, red Kool-Aid color and its nasty side effects.
I complained about the side effects in my last post. When the nausea is bad, it’s really bad. I’ve been lucky I’ve only had a couple bad days.
The nausea has been progressively worse after each round, so I’m bracing for when it hits next week.
Adriamycin is so toxic that the nurses put on gowns to administer it so they don’t come in contact with the drug. It makes my bodily fluids toxic for two days after treatments. It could cause tissue damage if it somehow is administered outside a vein.
It could damage my heart (a less common side effect).
But the important thing is that it’s a powerful drug that kills cancer cells.
The end of A/C is a milestone worth celebrating, but chemo isn’t over. Soon, I’ll start a weekly chemo regimen with the drug Taxol for 12 weeks. My doctor assures me it’s much easier on bodies than A/C.
So I’m looking forward to that.
Hair loss is a Red Devil side effect. I’ve been wearing a pink wig to deal with that. It got me a couple stares and few compliments at the Cancer Center. I think it’s fun, and if there’s ever a time I needed fun, it’s now.
Pink hair, don’t care
It’s not something I’ve ever done to real hair. I’m pretty plain Jane when it comes to that. But when will I get this chance again. Hopefully never.
With three rounds of chemotherapy down (and more than I’d like to admit to go) I’m to the point where I can predict what days I will feel bad.
I was told the second and third days after treatment would be the worst, but that’s not been true for me. I have chemo every other Friday right now, and I don’t feel bad until the following Thursday and Friday.
So it should have been no surprise that when I ventured out for a doctor’s appointment early yesterday morning, I was setting myself up for a bad experience.
But I underestimated how bad I was feeling and kept my appointment with a new primary care physician. My oncologist recommended getting one to oversee my care.
The nurse took my blood pressure, but it was so low she called in another just to check. She had done it correctly; I was just sick. And my doctor didn’t seem to know what to do with me.
I took one side off my face mask and tried to breathe through the nausea until I could make it out of the exam room.
We made it through my medical history, physical exam and my request to PLEASE WRITE ME A PRESCRIPTION FOR SOMETHING TO HELP ME SLEEP.
“I think I’m going to throw up,” I said.
“You’ll tell me if you’re going to, right?” was his reply.
Luckily, his attending physician came in after him and escorted me out, apologizing and telling me to call her in a week if melatonin didn’t help me sleep through the steroids after chemo.
I made it to the lobby bathroom of the doctor’s office before getting sick in my face mask. A nurse brought me another and told me to bypass their checkout line.
I felt too relieved to be embarrassed about it. The nurse offered to wheel me out, but I genuinely felt better after it happened. Until then, I wasn’t sure I would even be able to drive myself the 5 minutes home.
Cancer treatment is daunting.
I am amazed that even though 245,000 women are diagnosed with breast cancer each year (according to the CDC), our best treatment for it these toxic chemicals that may make me sick, bald and may cause me to go into early menopause.
It makes me sad to think that some cancer patients will live out their last days like this. This is no way to live.
Once chemo is done, I’ll have radiation. From what I’ve read and heard, I can expect burned skin general exhaustion during those days.
Between feeling sick and not being able to see most people to avoid getting COVID-19, it’s hard not to be discouraged.
But there’s reason to be hopeful. I have one more round of the chemo drugs adriamycin and cytoxan before I switch to taxol. My doctor tells me it’s easier on people.
“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.
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.
When the day comes, I wait alone in a hospital room to be taken back to surgery. I’m having a lumpectomy, which is outpatient surgery. I’ll be home the same afternoon.
My mom has come in from Kentucky to be there for me, but because of COVID-19, the hospital isn’t allowing visitors. She can’t so much as come into the waiting room with me. She drops me off in the morning and retrieves me — doped up and disoriented — that afternoon.
We start the morning with her pastor leading us in prayer over her vehicle’s speakers. I may have turned my nose up a bit when she mentioned wanting to do this. I don’t know her pastor. But I admit, it gave me a certain kind of peace.
By now, I’m used to hospital visits alone. At appointments so far, hospital workers wearing face masks and armed with thermometers guard the entrance of the buildings. They check me for a fever and ask about my recent travel history and whether I’ve had any cough or shortness of breath.
This day, they give me a face mask to wear, though I have no travel history or COVID-19 symptoms. My nurses and doctors all wear one too. I find it difficult to communicate with a face covering. We rely so much on facial expressions.
My nurse that morning, kind as she is, misspeaks. She tells me after I change into the hospital gowns, “We’ll bring back your family to wait with you until surgery starts.” It’s probably something she’s said to hundreds of patients over her career, so much that she doesn’t think about it, but it isn’t true today. “My family isn’t here,” I say. She apologizes, remembering that she’s been off work for a while and that protocols have all changed since then. “It’s OK,” I say. “Mom will be here for me this afternoon.”
I’m not really alone, though. She and the other nurses are very kind and there’s a television that I will eventually switch to “The Price is Right” as the scheduled surgery time comes and goes.
My nurse reads a note about me passing out from my last IV. She gets me heat pack and holds one of my hands while another nurse puts in my IV. (Then she sanitizes both mine and her hands because COVID).
A friend from high school is a nurse in the recovery room. She stops by before the operation just to say hi, even taking over her face mask for a moment. She’s brought me handmade face masks that I may need to wear in public, especially if or when chemo treatment treats. Turning to go back to work, she calls to another nurse, “That’s my friend. Take care of her.”
***
Sitting in a hospital recliner waiting, you have all the time in the world to think over what could go wrong with your surgery. What if I don’t wake up? What if the anesthesiologist only administers part of the drugs and I feel every part of it while I’m paralyzed and unable to tell the doctors to stop? (A doctor friend told me a story like that way before I got sick.) What if they operate on the wrong side of my body?
None of these things happen. By the afternoon, I’m sleeping off the anesthesia in my bed.
My hair has grown back enough to cover my head, so I’ve stopped wearing wigs, even to work. To be honest, I was getting tired of wearing them anyway. The one I was wearing was starting to look raggedy and it wasn’t very natural on me, plus it made my head itch.
One thing the wig was good for was keeping my head warm. December is a rough time to have next to zero hair. This winter I should invest in warm hats.
People have mostly been supportive, telling me I have a good head shape for short hair. So that’s something. There are a lot of people at work who may not even know I had cancer. Many started working there after I was already working from home during treatment. I get the feeling maybe they just think I have a new haircut.
I have, unfortunately, been mistaken for a man a couple times. The latest incidence of this was at a store after work last night. As I waited for the clerk to ring up my cat food and eggnog, he said, “How you doing, bub?”
It was kind of funny. Earlier this week, a man asking for change outside a drugstore called me sir. I gave him a dollar anyway. You just have to laugh about it.
Recent picture of my hair length.
Losing my hair was one of the most traumatic and jarring parts about cancer treatment. Sometimes I run across videos on the internet of women shaving off their hair for the hell of it, and it sends me back to that moment: me in my hairdresser’s chair wearing my mask and a “Keep up the fight” t-shirt, my mom watching from beside me. It’s not just the moment of cutting it off, it’s the dramatic change in your appearance that can be traumatic.
Earlier this week, I dreamt I had my long hair back again. I ran my fingers through the stands and knew that I was dreaming. I woke up with hot tears on my face and the realization that I was more emotionally attached to my hair than I knew.
But the good news is there are advantages to having hair this short. The biggest is that it takes me no time at all to get ready in the morning. I haven’t had to use a blowdryer since May.
And my hair is growing back more and more each day. Everyone around me says they see it getting thicker and longer each time they see me. I’ve been taking a hair, skin and nails vitamin to help it along. I can’t say for sure if it’s helping or not.
It will be awkward for a while, I’m sure. Anyone who’s every grown out their hair after it was short can tell you that. But I’m glad to have gotten to this point and excited to watch it grow.
I figure there may be a few of you who stumbled onto this blog because you’re going through your own cancer treatment. Maybe you have questions about what it’s like.
With that in mind, here’s what radiation has been like for me so far.
I’m about to be done with my 28 radiation treatments. I go every weekday to the CAMC Cancer Center for treatment. Luckily, the treatments are relatively quick.
My treatments are usually scheduled for early in the day — around 7 a.m., so that I can go before work. The cancer center let me tell them what time of day I prefer, although not all appointments are that early.
When I arrive, I scan a registration card to let them know I’m there. Usually within a couple minutes, they call me back to get changed into a hospital gown. There’s a men’s dressing room and a women’s dressing room.
Patients put their clothing and belongings in a locker. Another minute or so and I get called back for the actual treatment.
Since my cancer was in my breast, I lie face up on a bench on the radiation machine (it has a more formal name, but that’s what it is). My arms are over my head with my hands gripping handles.
The therapists adjust my body to a precise position.
The room is kind of cold, but the therapists put a warmed blanket over my arms.
The most uncomfortable aspect of this type of treatment is exposing myself to strangers, but even that you can get used to. Laying on a machine with my chest exposed was awkward for the first day or two. By a few treatments in, I was chatting with the therapists about the weather and weekend plans. Everyone at my cancer center has been extremely kind and respectful.
The therapists leave the room, and a big thick wall closes in the doorway.
It’s hard to describe the treatments themselves. I can’t see much but the ceiling, a monitor and the machinery moving around me, buzzing and making other noises. I don’t feel the radiation or anything at all during the treatment itself. It’s over within 10 minutes or so.
Only recently have I actually felt the side effects of radiation. My skin is red, despite the layers of Aquaphor and lotion I’ve been putting on it every night. It hurts, much like a sunburn would.
And I’m exhausted. I sometimes take naps before bed. Occasionally I’ve been nauseated to the point of throwing up. That wasn’t one of the side effects my doctor mentioned, but I’m sure it’s from the radiation.
But luckily this will all be over soon. Monday is my last treatment.
Notes for the memoir 