This story is part of The Cancer Letter’s ongoing coverage of COVID-19’s impact on oncology. A full list of our coverage is available here.
Cancer patients and survivors should not get COVID-19. A three-time cancer survivor should definitely not get COVID. But I did. And it was not good. Here is my story and the lessons I learned that might be of value to others.
I had been sequestered at home—working and supervising my staff of about 40—since March 16, wearing a mask on the rare occasion I ventured out of the house, washing my hands when packages arrived and when returning from trips out of the house.
I declined invitations to attend church events, and I only went to campus for medical appointments. I even participated in our cancer center’s core grant site visit preparation and actual site visit remotely via Zoom. My husband got COVID at the end of August, but with attention to isolation, wearing masks, and handwashing, none of the rest of us in the house got it.
At the end of October, I was contacted about participating in a COVID vaccine trial at OSU. I passed the initial eligibility screen and had an appointment scheduled in mid-November to finalize eligibility and then participate in the trial, if eligible. Then, a friend, who had been coming to my house regularly, came to my house on Nov. 2 with symptoms, which she didn’t recognize as COVID.
Neither of us wore a mask, but we were socially distant the entire time.
Lesson 1: Never let down your guard with this virus.
My symptoms started with a very mild sore throat and cough on the evening of Nov. 6, when I received a text from my friend, saying she tested positive and that her symptoms had actually started on Oct. 29.
I knew then that I had COVID. The next day, my symptoms persisted, so I contacted my PCP through MyChart and asked to be tested.
I thought I would have a mild case, like my husband and many others, and could wait till Monday to hear back from my PCP. But that night I experienced my first “COVID night”—waking up at 2 a.m., with a headache in the middle of my forehead, coughing, insomnia and alone.
I knew, then, I was in trouble. But, I thought, how does one get tested on the weekend?
Fortunately, I thought to email my oncologist and asked if I could call her. She promptly replied, and I called.
She heard something in my voice that I was not aware of and told me to go to the Emergency Department—the only place a COVID-positive person could seek care other than the hospital. She called ahead and told them to put me in a room.
I got in my car, thinking I would get tested and come back home, as my husband had in August, and drove to the medical center. After checking in with the reception person, saying “no way do you have a room already,” and vitals taken, I was indeed taken to a room. Immediately, four staff came in the room, in full PPE gear, and assisted me in changing into a gown, got me hooked up to monitors, and started an IV.
They then started asking me questions, and as I was answering, I noticed that I was out of breath as I spoke. They did a rapid COVID test and left the room for 69 minutes until the results came back. Of course, the results came back positive—then the action really started.
Lesson 2: Listen to the small cues your body gives you and act promptly. Listen to what your patients are not saying.
A hospitalist peeked in and said he would be right in. He came back in full PPE gear and said, “You don’t look sick, but the ED personnel told me you have an elevated heart rate and are out of breath when you speak.” Key symptoms I had not recognized myself.
We discussed the possible effects of COVID on my body—a body that had a history of three breast cancer diagnoses and treatments, asthma, cardiomyopathy from past chemotherapy (now under control), heterozygous for Factor V Leiden mutation, and pre-diabetic.
Then what I was not prepared for—the discussion of a DNR. That brought the seriousness of this upfront and personal.
The Infectious Disease attending came in for a consult. I had a chest x-ray and a nebulizer treatment. I was started on anticoagulants and steroids and was told I was to stay the night for observation. There were no open beds in the hospital, so I stayed in the ED all night.
I talked to my family who came and got my car, and then I texted my colleagues and staff with the preface “Don’t freak out, but…” Of course, everyone freaked out.
Lesson 3: Good friends and colleagues are priceless.
I felt better in the morning, and was discharged with instructions and prescriptions.
I sat on a Zoom meeting and turned in early—all the time isolating from my two boys, who had not been diagnosed with COVID—my husband was immune from his diagnosis in August.
I enjoyed a delicious meal and called it a night. From about 2 a.m. to 4 a.m., I had another COVID night—coughing, headache, insomnia, helpless and alone in the dark waiting for daylight and hoping sleep would come.
In the morning, my oncologist texted to check on me, and I told her I was worse, with coughing and a headache, and she decided to admit me. The troops were called in and mobilized to get me admitted and started on remdesivir.
I knew whom to call and how to get help. I wonder about others who are not as connected and educated as I am and how they deal with all these symptoms and side effects.
It was not until 4:30 p.m. that I got a text saying to go to the hospital as a bed had opened up.
My son drove me, and my husband met me at the hospital.
As instructed, I went to Admitting and sat away from others until called into an office for the admission process to begin. Once the staff realized I was COVID-positive, I was isolated in the office—the second time I realized that COVID patients have a big Red “C” on their back and everyone runs away from us.
As I sat in the office, waiting for a room to be ready, I was called by a colleague about joining a monoclonal antibody trial. I agreed, and then the clinical trial staff called, and we completed the informed consent process over the phone and by email.
Finally, by about 7 p.m., I was shown to my room, settled in and hooked up to monitors.
Unfortunately, it took six sticks to get my IV started (finally by the IV team) and blood drawn (10 tubes) for the study. I had another chest x-ray, and I got the study drug first, then at 9 p.m. the remdesivir.
An antibiotic was added to my medications to address the pneumonia. I realized I hadn’t eaten dinner, but by then it was too late. So started my five-day hospital stay.
I settled into sleep, but at 1 a.m. I was awakened by shaking in my legs, which then proceeded to the rest of my body. I called for the nurse and she gave me a blanket, but for two hours this “COVD night” was marked with shaking, coughing, and insomnia. And I was alone, in the dark, not knowing what was going on.
Lesson 4: The comment I heard from a CBS news anchor is correct—“COVID patients are sick, afraid, and alone.”
The next morning, I decided that I was going to sit up in the chair during the daytime, and follow instructions to walk 15 minutes, blow into the spirometry device, and drink water each hour.
After hearing me describe my night, the day nurse decided to do a simple nursing intervention and get me an airbed—what a difference! I received superb care from all the physicians and staff—and all patients—even with the risk of exposure to a COVID patient.
Even the housekeeping staff—there was only one young man who would come into my room—was considerate and brightened my day. Now, the food was not good—HOWEVER, that was because I lost my sense of taste and smell (and did not realize it)—so, I really can’t totally blame it on the hospital food.
Lesson 5: Health care workers are superheroes.
I managed to work by Zoom and on my iPad, with most people not knowing that I was talking from a hospital room.
However, those I told were very gracious and understood my delays in completing work. My colleagues and staff checked on me daily, and I Zoomed with my family and a close friend. This all helped pass the time without visitors. I even participated in administering a Master’s exam via Zoom one afternoon—the nurse told all the rest of the staff not to bother me for an hour, because I was giving an exam.
Lesson 6: Contact with friends and family provide distractions to help pass the time, even without visitors.
On Nov. 15, I was discharged, with instructions as to what symptoms to look for and came home.
First thing I did was have a nice, hot shower. I set up my bedroom to isolate in and settled in for the end of isolation. That did not come soon, however.
My cough continued, COVID nights continued, and I developed POTS—positional orthostatic tachycardia syndrome, which is reported in COVID patients. This was diagnosed after I blacked out for a second and fell after bending over.
Additional testing found inflammation around my heart—but fortunately, no effect on my ejection fraction. My lungs still had residual damage from pneumonia, and I still had no taste or smell through Thanksgiving and Christmas, missing the taste of the amazing baked goods my husband prepared.
Lesson 7: COVID is evil, no joke, and very dangerous—it can affect every organ system.
The worst part of COVID is the fatigue made worse by COVID insomnia.
I knew I was at the end of my daily ration of energy when the “wall” would descend after five or so hours of Zoom meetings.
COVID brain fog would come and go. Bedtime was usually before 8 p.m., after a routine of checking vitals and a nightly nebulizer treatment. I had to drink at least 84 oz. of water each day for the POTS symptoms and continue using the spirometry device twice a day.
Melatonin has been reported to help with COVID insomnia and inflammation—good thing I was already taking it.
Lesson 8: Rest is essential but sometimes hard to get.
Since I was still coughing, the usual rule for being allowed out of isolation 10 days after diagnosis did not apply—so it was three weeks before I was out of isolation.
When I heard that, I was elated! No more masking in the house among my family, and I could go out of the house—with a mask and social distancing.
When my son heard the news, the first thing he did was give me a BIG hug. Freedom was just in time to do some Christmas shopping! It felt so good to be able to drive my car and leave my house, not to mention being able to be around my family.
Lesson 9: Enjoy the small gains and victories.
I write this on Dec. 30—eight weeks since I was exposed. I am still coughing. I still have COVID nights, but not every night. My heart rate is still elevated some of the time when I stand. My taste and smell are slowly returning. My COVID brain fog is lifting. And I am able to stay awake later and later each day. Progress is very slow for someone who usually goes a mile a minute.
Lesson 10: Patience is a hard lesson to learn.
Overall, I have been very fortunate. I was in the “system.” I knew whom to call and how to get help. I wonder about others who are not as connected and educated as I am and how they deal with all these symptoms and side effects.
Once you are diagnosed with COVID, you can only go to the hospital or ED for care—no wonder so many people are dying. No wonder the hospitals and the health care workers are overwhelmed.
This experience has left me with many questions that are not addressed for usual citizens: How do non-medical persons and cancer patients/survivors know when to seek care? How do they know when symptoms are progressing? Where can COVID-positive patients seek care outside the hospital? How is information conveyed to disadvantaged populations or those who do not have access to adequate and equal care? How will the isolation caused by COVID affect all of us going forward?
It is very interesting to talk with other COVID survivors. Each of us has a different experience but each of us: 1) needs to talk about it; and 2) feels overwhelmed by the impact this virus has had on our bodies and on our life.
If you are not a COVID survivor and get in the middle of other survivors sharing their experiences, be ready to listen for a while—and please let us vent. And all of us talk about the COVID nights—being isolated, alone, sick, and not knowing what to do.
My experience as a breast cancer survivor has helped me mold my intervention research to address breast cancer disparities. This experience with COVID likewise is already shaping my current research on COVID behaviors, testing and vaccination behaviors.
I am grateful to my family, friends, colleagues and health care providers for helping me survive COVID. Like the COVID nights turned in to daylight each day, I will recover and will be back full force. A new year, lots to look forward to, but always remembering the lessons learned in 2020.
