By Karen Pellicano

I am not the kind of person who regularly goes to a doctor. I’ve been told by doctors that they know the problem is worse than I’m reporting, because the fact that I’m willing to go to the office at all, that tells them that something went terribly wrong.

When I started going to the doctor with crippling lower back pain, not once, but 6 times in two months, it should have sent up red flags. But at the time, my doctor’s office was a training center for new graduates who hadn’t picked a specialty yet. Doctors stayed for 6 months to a year, and then continued their education. One said I had IBS, because of my age and the fact that I’m white. One suspected a slipped disc. One decided that I was merely ‘hysterical’ and should take tranquilizers.

And that is how, on a beautiful spring Saturday morning, I ended up howling like a wild animal and waiting for my husband to return from work to take me to the hospital. I’m still not sure why I didn’t call 911 - at the time, it honestly hadn’t occurred to me. When my beloved pulled in at 1:00, I was waiting with my purse in my hand. The road between his work and our house was out of cell range, so he didn’t have any idea that something was wrong. Our daughter was in the house cleaning on overdrive to combat the stress, and I was attempting to comfort her, telling her that I was fine, then laying on the floor in a fetal position and screaming. She didn’t believe me.

Because I had a couple of hours of agony and no self-control, I turned to online self-diagnosis and determined that it was appendicitis. Armed with this knowledge and a bag to hold the vomit that was erupting from my body, we started the 40-minute drive to the hospital. By the time we arrived, I could barely stand up. I went to the front desk and announced that I had appendicitis. Then I collapsed. My husband came from parking the car and I was already in the treatment room.

The nurse told me it was a kidney stone and I told her that I knew she was wrong, because I googled the symptoms and it was clearly appendicitis. Then they gave me morphine and the world started to make sense again. I was only able to have enough morphine to last for 15 minutes at a time, so during those 15 minute intervals my husband and I made plans for next steps. By the end of the 15 minutes, I was barely lucid, begging for relief. And then the wonderful warm sensation of morphine would clear my mind for another 15 minutes of productive thought.

A CT scan showed that the left kidney was completely impacted with kidney stones and the right kidney had two stones that were 50mm and 75mm - a ‘normal’ stone is 2-5mm, and a very large stone is anything over 7mm. I was rushed into emergency surgery for the first of what would be six surgeries to remove stones and try to salvage the left kidney.

For the next three months, I was in surgery every other Monday, meeting with the surgeon on Wednesdays to discuss the viability of saving the left kidney and planning the next surgery or watching Gilmore Girls. I still worked every day, even though I had stents in both kidneys for the duration of the three months and by the end of the day Loreli’s problems seemed more manageable than mine.

Three months later, the left kidney is somewhat intact, functioning at 10%, the right kidney is mostly intact, functioning at 85%, and it’s over.

Except that it’s not.

My condition, it was explained to me, is very unusual and I will likely suffer from kidney stones for the rest of my life. The doctors would ‘keep an eye on it’ in regular tests. I would take a medicine which caused violent stomach revolts. At this point I had been a T2 Diabetic for a few years, and though the kidney complications had nothing to do with the diabetes, the diabetes very much impacted the kidney stones. So I was armed with the food restrictions of diabetes, and the food restrictions of my particular kidney disorder, nauseating medicine, regular testing and a survey to gauge my satisfaction with my care.

The food restrictions for each illness contradicted each other and I still struggle to figure out what to eat. I’ve had many more kidney stones and the diabetes has progressed. The kidney disorder turned into a life-threatening infection when the ICU was full of COVID patients. I learned that I make uric acid and calcium kidney stones, which came with further food restrictions. Four times a year I go for a battery of uncomfortable tests and I have permanent damage to all parts of my renal system.

I have the ability to see the future now. My surgeon told me that we know what’s going to kill me, we just aren’t sure when. I’ve had 11 kidney surgeries, countless ‘procedures’, regular stents in both kidneys for weeks at a time, blood tests and quarterly 24-hour urine collections.

Now that I have a sense of how my body works, all the fear of the past 7 years is threatening my mental health. Watching my body transform from strong and capable, to withered and tired has brought on a number of interesting changes. When I’m tired now, I sit down. I didn’t before. When I’m sad, I cry. When I’m hungry… Well, honestly, I still have a lot of issues around food. And when I used to tell friends ‘it’s not worth your health’ as a solution to their life problems - now I really embrace that reality. For me, it all fell apart on a spring Saturday morning and I’m still reeling from the issues and maintenance that come with that.

At my most recent series of appointments, every test came back in a safe range. For the first time in 10 years, I am tentatively healthy. Some days I focus on the word healthy, others I focus on tentatively. Some days I thank my body for what it’s come through, others I cry for what is still ahead. I cry for the fact that I will never be healthy without the caveat that it can all be taken away in a minute.

And some days, I’m grateful. I’ve come to realize that everyone should spend a few days or weeks in a body that doesn’t work as expected. You learn a lot about yourself and the kind of person you want to be.

I was very active before I got sick. I loved hiking and extreme mountain biking. There was no challenge I would rise to and I was proud of that. I hike slower now. I bike on the roads or smooth trails. I’m conscious of the fact that my immune system is compromised. I take medicine and wear a mask in a crowded place. But I also read more. Write more. Think more. Rest more. I’m a more thoughtful and compassionate person. I know that tomorrow could start the road to dialysis or diabetic complications and I take it more seriously. At 54, I’m going back to school to get my Public Health Degree because I want to help people learn to navigate the system that educated me the hard way. I recognize the toll that stress takes and I meditate throughout my day. It’s gone from being a 20-minute chore to check off a list, to a regular, normal part of my life. In a stressful meeting, I will excuse myself to go to the bathroom and take a minute to check in with how I feel. I have a continuous glucose monitor that embarrassed me at first, but now it’s part of my routine. I don’t care who knows and I’m happy to explain it to people with questions. I know that even if I don’t know how I feel, the beeper in my pocket knows.

Being sick and accepting that I’ll never be perfectly healthy again has given me the freedom to drop the shame of imperfection and really start to embrace the flawed people around me. I said my goodbyes and made my peace and then bounced back. Then I did it all again, and bounced back again. Doing end-of-life activities once is humbling, but doing it three times is enlightening. You start to understand what you’re saying goodbye to, what you need to hold on to until the very end, and what you have to let go.

Karen lives in New Hampshire with her husband and son. She enjoys all of the outdoor joys of New Hampshire living and is slowing down to appreciate it all more than she used to.

By Helen Zazulak

After an ultrasound and biopsy, on Friday March 2, 2018, I heard the words no woman wants to hear: "You have invasive breast cancer."

 My mind went blank. This was the same disease that had taken the lives of both of my grandmothers and inflicted my aunt and mother who are still alive.

The radiologist continued as I tried to focus: "Your tumor is estrogen, progesterone, and HER-2 positive."

A trifecta of cancer horror, but very treatable.

"We will set up an appointment with a surgeon and an oncologist".
Then winter in New England arrived with a vengeance and the most snow ever recorded in March. A blizzard conveniently came on the day of my appointment with the surgeon and oncologist. Was someone trying to torture me?
On the day I finally met with the surgeon and oncologist, I had two cancer survivors with me: my brother, who had Hodgkin's lymphoma in his 20s, and my boyfriend, who had melanoma two years before. Besides my brother and my boyfriend, my cancer team also included my parents. All four are cancer survivors, amazingly!
They listened, asked great questions, and provided input - all things they had learned from their own cancer journeys.

I'm not the average patient. At my previous job, I tested and researched targeted cancer treatments. One of these treatments, a monoclonal antibody called Herceptin, became part of my treatment plan. During my first meeting with the oncologist, she printed a medical article about my treatment plan, stating: "I usually give biotech people like you an article to read." After reading the article, I felt like I had some type of control over my treatment and the right doctor to be part of my growing team.

While waiting for surgery, I caught norovirus, and was sick for two weeks, losing eight pounds. As the surgery date approached, I feared I had lost too much weight and that out-of-range blood test results would further delay my surgery. On a particularly bad Sunday, when norovirus still had its grip on me, I did not make it to the bathroom in time, ruining my clothes. I cried out to God with tears running down my face, feeling especially sorry for myself: "God, if I have to go through breast cancer, please let me be able to help someone else get through it too."
The norovirus eased and I passed the pre-op with flying colors, so my surgery went ahead as planned. New England weather even cooperated on surgery day. The surgeon removed my sentinel lymph node, tested my other lymph nodes and got rid of that nasty tumor in my left breast. After the successful surgery, I found out that my lymph nodes were cancer free. Phew!

 As I recovered from surgery, friends and family came to keep me company and assist me with meals and housework. I couldn’t lift anything heavier than one pound, which is pretty much everything. If I overdid it, I would know because my surgical area pounded.

One spring day, Jackie - a nurse, friend, and neighbor who built her life around caring for others - stopped over for a visit. Jackie’s family and mine grew up together. My parents and Jackie always encouraged my interest in science and medicine. Having them as mentors made a huge impact on me choosing science as my career. Despite our differences in faith (Jackie's family is Jewish and mine is Catholic) we had an understanding because we all believed in the same God who united us all. There's nothing better than a long-time friend who is never out of either interesting stories or the photographs to go along with them.

Jackie asked about the surgery and my recovery, sounding just like a nurse, and I explained my limitations. She smiled and offered assistance, but my team had already done most of the “heavy lifting.”

A couple of months later, before my chemo started, Jackie called and I assumed it was to check in on me. Boy, was I shocked when she said: "They found something on my mammogram and I have an ultrasound scheduled."

 I responded: "Oh, I bet it's just nothing. The new mammograms are very sensitive."
But that's not what happened. Jackie had a biopsy and had the same awful waiting time I recalled from my own experience just months before. She then called with unsettling news: "I have invasive breast cancer, too! The tumor is estrogen positive. I need to have the same surgery that you had. Because I'm older and my tumor is smaller, the oncologist feels that I will be okay with just surgery."

 Before her operation, Jackie and I sat at my kitchen table discussing medical articles and information about the surgery that I had copied from my own pre-surgical information. In a few weeks, she would have the same exact surgery that I had months before. The timing of the diagnosis and surgery was uncanny.

I told my friend Rob, who I had met at a creative writing class as the local technical high school, about Jackie and my cry out to God. What he said would forever change how Jackie and I viewed the situation: "I became a therapist after reading the Talmud. It says 'If you save one person, then you save the whole world,' and that's what you have done by helping Jackie.”

Here was the answer to my call out to God on that terrible norovirus Sunday. Here I was helping that one person months after my surgery. God had heard me and sent along Jackie. Of course, I would never wish cancer on anyone, especially a longtime friend. But here we were going through the same surgery just months apart.
Jackie needed to hear this.
After her successful surgery, Jackie called and we had a very memorable conversation:

“Jackie, do you know that saying from the Talmud, ‘If you save one person, then you save the whole world?’” I asked.

“Of course I do.”

 I explained about my cry out to God. It did not take her long to make the connection.

 “So, that means that God heard you. Because there is no way that I could have gotten through breast cancer without you! Thank you for saving me.”

 Over the phone she could not see the tears that came to my eyes nor did she realize how much I would need her words to get through the months of chemo, targeted therapy, and radiation that were coming my way next.

 I continued my breast cancer protocol, experiencing months of weakness, fatigue, hair loss, and exhaustion. In the spring of 2019, I had my last Herceptin treatment and my energy and hair slowly started to return. Today, Jackie and I both remain cancer free. My family, friends, acquaintances, medical staff, and skilled doctors continue to be my dedicated team. They say that it takes a village. But that's crap. It takes an entire city!

 Then the pandemic began.

 After my cancer experience, I was well prepared for stay-at-home advisories. I had been living them since 2018. The same hobbies and activities that were great distractions during my cancer adventure soon became mainstay for the rest of the country and the world. I told everyone that surviving breast cancer is getting me through the pandemic.

In late winter 2020, COVID vaccines arrived. We were all filled with hope now that we had a way to combat this awful pandemic. The local technical high school, the same one where I first met Rob at the creative writing class, was one of the COVID vaccination sites in the city. Now that Jackie was feeling so much better from her adventure with breast cancer, when she heard that volunteers were needed at the vaccination site, she signed up. She donned a moon suit and manned the check-in area helping with paperwork. Her actions were right from the Talmud: she was trying to save just one person. And who that person was would soon surprise even me.

One Saturday, Rob showed up for his scheduled COVID vaccine at the technical high school vaccine site. And guess who helped him with checking in and paperwork? Jackie! They had never met each other. The only way I knew that they met then was because my mother sent me a photo of Jackie wearing her moon suit at the vaccination site.

I emailed Rob the photo of Jackie in her moon suit, and he said: “Of course, I recognize her. She was the friendly, spunky check-in person at the vaccination site at the technical high school last Saturday.”

So two people who had survived so much and had done so much to save the world already were brought together in some of the strangest conditions: a pandemic, a city vaccination clinic, and a moon suit. It was me, the third person who had saved Jackie, who was able to make this unbelievable connection.

Who have you saved today? Who has saved you? Keep your eyes open because they may be smiling at you with their eyes behind a mask at the grocery store or doctor’s office. Maybe they are a kind neighbor, the mail carrier, or long-time friend. We are all striving for something every day. We are all trying to save just one person, and in so doing we are saving the whole world and ourselves along the way.

Helen Zazulak is a biotechnology research scientist, volunteer for the Government Relations Advisory Committee and District Activist Leader for the National MS Society, creative writer, and biography and history book club member.