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.
I was scrolling through Facebook on a Friday morning when I saw it. A restaurant where I had recently picked up takeout announced that one of their workers had tested positive for COVID-19. And as coincidence would have it, that person had last worked at the restaurant the same night I got dinner there. Still, I wasn’t too concerned. I had worn a mask. The restaurant employees were also wearing them. Plus, I was inside the restaurant only three or four minutes at the most. I also had no symptoms of the coronavirus. But as an employee of the local health department, I have been encouraging people to get tested for the virus, and my coworkers were holding a free drive-up testing event that same day. Possible interaction with someone who has the disease felt like the perfect excuse and opportunity to experience first hand what it’s like to have a COVID-19 test. I decided to go to Shawnee Sports Complex. The line that day was mercifully short. While filling out a little paperwork, I chatted with some of my coworkers I hadn’t seen in a while. One of them gave me my flu shot. Then it was time to pull the car up to another station for the COVID-19 test. I’d heard a lot of descriptions of COVID tests. By now you’ve probably either seen one done — Governor Jim Justice recently had one live during his media briefing — or you’ve had one yourself. One of my favorite descriptions came from WCHS reporter Bob Aaron, who did a story about one of the health department’s drive-up testing events. I believe he called it “up your nose with a rubber hose uncomfortable.” Fortunately for all of us, though, the test involves a small swab up your nose, not a rubber hose. Bob was right about it being uncomfortable, though. When the man who did mine left it in for a few seconds, my eyes watered. He warned that he was going to twist the swab and that my eyes would water again. They did. Then the test was over. My official review of getting a COVID-19 test — it wasn’t that bad. Honestly, after five months of chemotherapy that requires regular blood tests, any medical tests with no needles or blood is fine by me. Even getting my flu shot was a welcome change of pace. Two days later on Sunday evening, I checked the website they gave me for results and got the answer I had expected — “SARS–CoV2 not detected.” I didn’t have COVID-19. Even when it’s expected, hearing that you don’t have a contagious disease is always welcome news.
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.
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.
I don’t have much to report about my own cancer treatment this week. I’m laser focused on the last of my chemotherapy treatments, which should be this week. But seeing as how my column is about having cancer during the pandemic, I thought I’d take the opportunity to tell you about how COVID-19 has affected cancer patients in general. Michelle Chappell and Juliana Frederick of the American Cancer Society were nice enough to let me pick their brains on the topic. According to a survey conducted this spring by the American Cancer Society, the most commonly reported impact to cancer patients and survivors was a delay in health care. The organization surveyed 1,200 cancer patients and survivors. It found that 79 percent of those in active cancer treatment and 78 percent of those not in active treatment experienced delays in their health care because of COVID-19. Missing health care appointments can mean that doctors don’t find cancer recurrences as quickly as they would otherwise. “Cancer care includes a range of services, including consultation with providers to plan and administer care for their cancer, anti-cancer therapies and surgery, imaging to determine if their cancer has grown or returned, and other health care directly related to their cancer,” Frederick said. “Checkups and screenings are an important part of cancer survivor follow-up care and delaying or missing these could delay the detection of a recurrence of their cancer.” One fifth of the cancer patients and survivors who were surveyed said they were concerned that their cancer was growing or that it had returned because of delays in getting health care. Seventeen percent of those who were surveyed reported a delay in their cancer treatment such as chemotherapy, hormone therapy or radiation. Luckily for me I didn’t share that experience with them. The number of certain types of cancer screenings also decreased during COVID-19, which could prevent doctors from finding and treating cancer when it’s at an early stage. Between January and April of this year, the number of screenings for colon cancer given nationally was down 90 percent compared to 2019, Chappell told me. She said we won’t know how much impact that will have for two years because of a lag in cancer statistics. Colorectal cancer is one of the four most common cancers in West Virginia, along with breast cancer in women, prostate cancer in men and lung cancer. COVID-19 has also had a direct impact on fundraising efforts by the American Cancer Society. You’re probably familiar with Relay for Life, the organization’s signature fundraising event. The Charleston Relay for Life event is typically held each year in May or June. This year because of the COVID-19 pandemic, the nonprofit agency had to cancel in-person Relay for Life events across the country. As I’ve written, cancer patients, like others with underlying health issues, are particularly at risk for complications from COVID-19, so it makes sense that the ACS wouldn’t want to host these events that might put the people they help at risk. So the fundraisers have been moved online for this year. I’ve signed up to help raise money for the organization. Donors can contribute through October, which is Breast Cancer Awareness Month. The nonprofit organization supports cancer research and also offers patient services through a 24-hour cancer information hotline for patients and caregivers. In cities with large cancer treatment centers, it offers patients a place to stay with its Hope Lodges. The organization also has lobbyists who advocate for cancer prevention and access to care at the state and federal levels. You can help me reach my goal of $2,500 by donating here: http://main.acsevents.org/goto/loriakersey
Things are overall going swimmingly with my chemotherapy treatments. By this time next week, chemotherapy will be over. I will have completed 12 rounds of Taxol and four rounds of Adriamycin and Cytoxan.
Taxol has been a walk in the park compared with A/C. I’ve not been nauseated and had the severe headaches that I had on A/C. Even the brain fogginess I had with A/C seems to be better.
Taxol has had its own side effects, but they’re less severe. My nails are discolored. I try not to use them much for fear they’ll come off. I’ve had nose bleeds. Then there was the anemia I’ve written about before. To my surprise and delight, my body has healed on its on from that. I didn’t need the blood transfusion my health care providers thought I would. Some days, I’m really fatigued.
But I haven’t had the bone pain or neuropathy that can be so common with Taxol. I’d like to attribute it to the ice gloves and socks that I bought, but the truth is it might be my age and my lack of nerve damage before this process started. While I’ve tried to use the gloves and socks, I still hate the cold, and I’ve been able to keep the gloves on for very long. I’m sure they’re doing some good, but I don’t know how much.
I’m very much looking forward to being done with chemotherapy. I’m really tired of being bald. I can’t wait till I can start taking vitamins to help along hair regrowth.
I’ll meet with a radiation doctor at the end of the month to learn what that process will be like. I’m hopeful it will be easier than chemotherapy, but we’ll wait and see.
This week I also signed up to fundraise for the American Cancer Society. The organization supports cancer research and also offers resources to cancer patients and caregivers, like a 24/7 hotline for questions about cancer. Because of COVID-19, they’ve had to cancel Relay for Life events around the country. That’s their biggest fundraiser of the year. I wrote about it in my newspaper column for this week and interviewed a couple of their staffers.
My chemotherapy treatments are winding down in a few weeks. By the time you read this on Sunday, I’ll have just two more to go. And you might be wondering, like I was, 1) how my health care providers will know for sure that I’m cancer free after treatment is over, and, 2) how will they know if it returns in the future? I’d heard of PET scans, which can be used to detect some cancers. I had assumed that at some point during cancer treatment I’d have to have a PET scan to determine if the treatment is working or if there are other affected parts of my body. It turns out, those scans are not recommended for breast cancer patients who are at stage 2, my doctor told me. For some other types and stages of cancer, they might be. When my tumor was removed during my lumpectomy back in March, the surgeon told me there were clear margins around the tumor and that the cancer was detected in only one of my lymph nodes. The former, as I understand it, means that the surgeon removed all of the cancer. The latter means that the cancer likely had not yet spread to other parts of my body. Those things together, as I understand it, mean I’m cancer free until proven otherwise. In my estimation, the 16 rounds of chemotherapy followed by however many rounds of radiation that my oncologist prescribed are not to kill any existing cancer in my body, but a measure to make sure no more of it grows. After treatment, I’ll rely on regular self examinations and yearly mammograms to detect any recurrence of breast cancer I may have. I’ve heard other breast cancer patients talk about the anxiety that comes with life after treatment. Some of them live in fear of their cancer returning. Mammogram days are scary. Aches and pains that might be ordinary for other people make them worry the cancer has returned or metastasized to other parts of the body. I’m not usually someone who worries a lot, but I can certainly understand their anxiety. Once cancer has happened to you once, what’s to stop it from happening again? Like anything else, that’s something I’ll have to take one day at a time. … I’m looking forward to meeting with the doctor who will do my radiation treatment soon and hearing how that will go. I know only a little about radiation from what I’ve heard from other breast cancer patients and survivors. Some of them say it makes them fatigued. One woman I know said she slept for 12 hours a day during radiation. Others report that it burned their skin. Still, I’m assuming that part of treatment will be easier than chemotherapy. I guess we’ll see when the time comes.
On another note, as much as I had panicked at the thought of having a blood transfusion to treat anemia, I still haven’t needed one. My body seems to be healing that on its own. At my last treatment, my hemoglobin had gone up to 8.7. It’s still not great but it doesn’t warrant having to get blood. I’m always very relieved when the nurses tell me that.
Last weekend, as I drove the winding roads home to Charleston, I had a moment or two when I felt almost normal. My energy was still up from the steroid they’d given to me during chemotherapy treatment the day before. I turned up the car speakers and sang along to my favorite Josh Ritter song. A slight breeze tousled the hair on my dark brown, curly wig as I walked from my car to my apartment building. But just like always, reality crashed in when I got inside and took off my wig for the night, remembering that chemotherapy took my hair. In the past few days, it’s really hit me how much I miss my normal life, the pre-cancer treatment me. I miss being able to have a glass of beer with dinner. I miss being able to pull my thick brown hair back into a ponytail. I miss running on Kanawha Boulevard early on summer mornings. I miss being able to stand up without getting light headed. I miss my chemotherapy-free Friday mornings. I miss going to work. Maybe you’re not going through breast cancer treatment (I really hope you’re not), but I’d venture to guess you miss your normal life, too. This pandemic has me wishing for a different type of normalcy than just pre-cancer days. I miss the inside of a crowded restaurant with no masks and no anxiety. I miss visits with my family members with no thought or concern about whether they wore their face covering. I miss waking up and not wondering what number the COVID-19 death toll has reached, or what scary new pandemic story the New York Times has just published. I miss not having to worry if the next person I talk to will give me a potentially deadly disease. But for all the ways that cancer treatment has upended my life, it is for the greater good of rooting out the disease that would have killed me otherwise. The same is true for all the precautions we’re taking to prevent the spread of COVID-19. Ultimately, I have to believe that I’ll make it through cancer treatment to the other side just like the world will make it through to the end of COVID-19. I’m guessing that I’ll be through with cancer treatment long before the world COVID-19 is done with the world. By the time this column is published on Sunday, I’ll have three more rounds of chemotherapy treatment to go. Then comes radiation therapy. During my last treatment, I gave up wearing the cold therapy gloves and slippers that could help prevent neuropathy. I had some work I needed to do while I was there. It’s impossible to write a press release with your hands stuck in big, icy mittens. Most of the time when I use the gloves, my hands can’t stand the cold for very long anyway. Maybe it’s all in my head but in the days since that last treatment, I’ve felt the occasional stabbing pain in my hands. It seems to hit and then go away quickly. Could that have been the start of neuropathy? Maybe. But overall so far I seem to be tolerating the Taxol chemotherapy a lot better than I did Adriamycin and Cytoxan. The best part is that Taxol hasn’t made me nauseated. During my last treatment, my hemoglobin was up to 8, so again, I didn’t need a blood transfusion. My nurse remarked that 8 was low, but I told him it’s an improvement for me. It’s even getting easier to exercise without getting winded.
My chemotherapy nurse had good news for me at my latest treatment: my hemoglobin numbers dropped only from 7.7 to 7.6. I’m still anemic, but that slight drop is not enough to warrant a blood transfusion just yet. My doctor said to do a transfusion if my hemoglobin number dropped below a 7. After all that stress and fear. After asking my social media friends for prayers and positive thoughts so that I wouldn’t be a complete wuss, I didn’t need to be brave for a blood transfusion after all. The nurse and I were both relieved, but I doubt I can get by too much longer without it dropping below a 7. I’ve accepted that I’ll probably be getting a blood transfusion at some point before treatment ends. I have four rounds of chemotherapy left to go. Logic says that every treatment increases the possibility. Little things like walking or even standing for too long sometimes tire me out. I’m looking forward to healing — whether that’s with a blood transfusion or finishing chemo treatment so my body can heal on its own. A former cancer patient told me not to worry about getting the transfusion. “You’ll feel like climbing a tree when it’s done,” he said. By this time next month I’ll be past chemo and getting ready to face radiation therapy. The end of chemotherapy can’t come fast enough. The nurse who draws my blood for labs tests every week is prepared for me now when I come to her office. She’s always got some little cups of fruit juice ready to go in case I get sick or light-headed. She hands me a little battery-operated fan that I turn on while she’s working. The airflow helps. Thank goodness for good nurses. I’m not sure how I would make it through without their care. I read an article in Outside magazine recently about new exercise recommendations for people undergoing cancer treatment. The American Cancer Society, the American College of Sports Medicine and other medical organizations now recommend cancer patients get at least 30 minutes of moderate-intensity activity three times per week, plus two weekly strength-training sessions. They note that exercise boosts physical and mental health and that physical activity can help in treating and preventing cancer. My own exercise levels have not been consistent through treatment. Before treatment started, I was running. Now, some days I feel well enough to get up before work starts and go for a walk. Some days I’m on the couch or my bed all day. The good news is that brisk walking counts as a moderate exercise, so when I do exercise I’m at least following their recommendations. Being anemic for the time being only complicates any attempt at exercising. A nurse friend told me she’s surprised I can function at all with a hemoglobin level of 7. She told me I shouldn’t exercise because I could pass out if I overdid it. I promised someone else that I wouldn’t go out walking alone anymore. I’m looking forward to the day when I can go back to running and not have to worry about all this. I have a feeling that getting back into running shape after treatment is over is going to take some time. But I’m lucky to have that time.
My health care provider, a physician assistant I’d met only that morning, was casual, nonchalant delivering the news. “You’re anemic, and it’s been getting progressively worse,” she said. She’d read the results of my lab work over the past few weeks. Anemia, caused by not having enough healthy red blood cells, is another side effect of chemotherapy. Bone marrow produces red blood cells that carry oxygen throughout the body. From what I understand, chemotherapy suppresses the bone marrow and causes it to make fewer red blood cells. The timing of my weekly treatments make it difficult for my bone marrow to rebound and start producing more red blood cells before the next treatment. People with anemia can experience dizziness, lightheadedness, heart palpitations and shortness of breath. Severe anemia can even cause organ damage. Despite the weekly lab work I have before my chemotherapy treatments, this is the first time anyone one has mentioned to me that I’m anemic. It seems like this would be good information to have. I start to wonder if this has anything to do with me feeling light-headed or getting sick and after I have blood drawn for lab work. Is this why I’m sometimes out of breath when I take the stairs to the second floor of the Cancer Center? I later find out that my hemoglobin (a part of red blood cells) level started at a 12 before treatment and now I’m at a 7. The nurse who administers my chemotherapy has even worse news for me. If the anemia gets any worse, if my number goes below a 7, I’ll have to have a blood transfusion. Let me just say: My rational self knows a blood transfusion is probably not a big deal. I’ve been told that cancer patients typically have to have at least one blood transfusion during the course of chemotherapy. And I know that there are all kinds of safety screenings in place to make sure the blood I would get won’t cause me any harm. After I wrote about this on my blog, two people reached out to me and said they’d had blood transfusions before and they felt so much better after having them. My rational self fully expects that to be the case for me, too. But the irrational part of me, the part of me that fears needles and hates the sight of blood, hates this idea. That part of me is still cringing from the news. “I can’t even think about that,” I tell the nurse while making a disgusted face. “That’s so gross.” He just smiles and tells me it sounds like a bigger deal than it is. Besides the transfusion, there’s nothing I can do to bring up my red blood cell count, I’m told. If it were caused by an iron deficiency, I could eat more spinach and red meat. But my anemia is caused by chemotherapy. If they were to hold off treatment, my numbers would probably rebound. But I’d like to get through with my treatments as quickly as possible. Over the weekend after my treatment, I grow either more anemic or more paranoid. I’m certain that I’m feeling more and more shortness of breath when I’m walking. My appetite is all but gone. I get lightheaded when I stand up. I spend most of my time in bed or on my couch. Exercise, I reason, might cause organ damage. Long story short, I end up back in my doctor’s office on Tuesday so the same physician assistant can explain anemia and the blood transfusion process again. I come away with the message that my symptoms would probably be worse if there were something immediate to worry about. Peace of mind for a $40 co-pay. I’ll have to wait until my next treatment to find out whether I need a blood transfusion.