I got to ring my own bell
I feel like I just got to “ring the bell’. Huh? What is she talking about you might ask. “What bell?”
I am talking about the bell I watched my friend Jamie ring recently in the oncology unit.
My “bell” was being able to click the MyChart link twice yesterday morning and read two messages with comforting test results. It had been the culmination of ten long difficult months.
For some of you, this will come as a surprise. Others have been with me since day one of this roller coaster. Months ago I couldn’t deal with a public explanation. Today I can finally exhale, and like so many things in my life, as you all have come to understand, writing about my experience is always a special kind of connection for me.
At 11:00 pm last June 30, my phone tinged with a notice that my MyChart posted test results for a CT scan I had taken earlier in the day. It was prescribed to rule out some obscure syndrome called May-Thurner and was a last ditch effort to figure out why my left ankle was oddly bigger than my right. I wasn’t expecting much so hadn’t been concerned. And then I read the results. The results said I had “no evidence of May-Thurner syndrome. But the test revealed that I had “a renal 3 cm heterogeneously enhanced mass, highly suspicious for renal cell carcinoma.”
Bruce and I immediately went into Google Doc mode and the pictures painted by the Cleveland Clinic, Mayo Clinic and WebMD were not very comforting. With nothing more that we could do at that time of night, we went to sleep anxious and frightened.
At 8:24 am the next morning I texted my friend Dara who was at that time an emergency medicine physician in New York. Without any explanation I sent her the test results. “Wanna talk?” she immediately answered. “Yes!!!Obviously, I am a wreck this morning,” was my answer. My phone rang instantaneously. She advised me to get in to see a urologist without messing around. She confirmed everything we had surmised from our scrolling and calmly reminded me, “This is a good cancer. Don’t forget — you have two kidneys.”
While knowing it was a “good cancer” might have brought some limited relief, the bottom line was clear — she had no doubt that surgery was in the cards and the sooner the better.
Getting in to see the doctor quickly was the next hurdle. Making an appointment with a new doctor, a highly respected specialist, over a holiday weekend is not the easiest process but luckily our general practitioner/internist had read the results and was on the case, too. By mid-afternoon I had made an appointment to see the Johns Hopkins director of urology oncology surgery on Tuesday morning. The fact that she has done her residency at the Cleveland Clinic, absolutely clinched the deal for me.
We called our kids first and then my family in Cleveland where we had been planning a long weekend to celebrate my great niece’s college graduation. We explained what was happening and cancelled our trip. It was going to be a hard few days and laying on the couch with a blanket watching HGTV was in the cards not pretending to be o.k. with my family.
What kept going through my head was that this isn’t really happening. This is all a big mistake; how could I have cancer?
Besides if I was going to get cancer it was always supposed to be breast cancer. My Mom died because her breast cancer was discovered too late. When undergoing surgery she coded on the table and after several hours in recovery went into cardiac arrest in the middle of the night. They couldn’t revive her the second time. That’s the cancer I have feared for the last 40 years. It also killed my maternal grandmother and my great aunts. After my first cousin had ovarian cancer, I was advised to do genetic testing. Even after determining I didn’t have the BRCA gene or other genes related to cancer, I was still convinced that the odds were against me. I have had questionable mammography requiring benign breast biopsies multiple times and had grown to accept the likelihood that one day I would be part of that sad statistic.
Nope. Kidney cancer popped up literally out of nowhere. No symptoms just an “ALERT: Incidental finding renal cell carcinoma.”
Scrolling on our phones obsessively that first night we read that suspected renal cell carcinoma is almost always malignant and because biopsies are essentially the same as surgical removal of the tumor, you get scheduled for surgery and the tumor is removed. After surgery you recover in the hospital for a few days and then that’s it in most cases. No chemo or radiation is often prescribed. Screening occurs regularly for five years.
By the time we met with my doctor, Bruce could have written a thesis on Kidney Cancer. After the first night, I couldn’t read another word. When I had gotten to life expectancy in the explanations, I would turn off my phone. So, of course Bruce came with me to hear what I might not and to be the rock that he always has been in our relationship. Thank goodness he helped me prepare the questions and then helped me absorb her explanation. I was numb.
I began to tell a few close friends what was coming and continued with our regular schedule including a busy complement of 2022 Democratic primary campaign events. I even told a handful of political friends what was going on while standing at the polls greeting voters for Wes Moore. The word got back to Wes, and, of course, he called me as soon as he heard, and his generous spirit came through as always. He made clear to me that I had many people who were praying for my good health. In my own way, even I started to pray.
Within days, after several consultations with others familiar with kidney cancer, surgery was scheduled for the late afternoon of July 28th. So, when my high school classmates were converging on Cleveland for our COVID postponed and much anticipated high school reunion weekend, I was at Sibley Hospital explaining my extreme anxiety to the nurse, anesthesiologist and my surgeon.
My Mom went into the hospital just weeks after my 40th birthday. She didn’t make it through the night. Our son David turned 40 two weeks before my surgery. It haunted me. I told my health care team that I was extremely anxious and why. They were all understanding. They didn’t try to talk me out of my fear. They listened with wide eyes open calming me with their professionalism. It was a good thing they did, my blood pressure is typically very low — on July 28th it was pretty elevated.
The care team at Sibley was kind and comforting especially the Filipino nurse’s aide who rolled me on my gurney into surgery and talked to me about our daughter-in-law Judy’s favorite dishes. “Her daughter-in-law is Filipino,” he said to the women busily prepping the operating room. Those were the last words I heard before the anesthesia did its magic.
Several hours later Bruce was there telling me I had done great. After some time in a haze I was wheeled to my room and shortly thereafter Bruce went home. That’s when I found myself wide awake.
Most people having had surgery sleep pretty soundly for hours after they are sedated. Not me. I couldn’t sleep. I was afraid to go to sleep. I was afraid I wasn’t going to wake up if I did. It wasn’t an unconscious fear — it was just irrational. Having been bored by the television, at about 2:00 a.m. I turned on the last chapters of Lis Smith’s audible book and once it ended and I had gotten past the middle of the night, I finally was able to close my eyes.
The next morning nurses and doctors on rounds told me I had handled surgery well, but I felt awful. Lack of sleep had done me no favors. My torso was sore everywhere and I felt like I had swallowed a watermelon whole. A young resident stopped by to check my wounds and made a point of telling me that my surgeon worked like a magician and was masterful. My doctor had been able to save as much of the kidney as possible. When she came by she explained that the placement of my tumor meant that she needed to keep her margins as tight as possible because if she nicked a blood vessel, she would have had to remove the entire kidney.
She expressed confidence that she had “gotten all she needed to” and that the pathology report would give us more answers.
I got some sleep, had some small meals and then late the next day I went home. An hour later my friend Marcy showed up with matzo ball soup which she delivered to Bruce and then promptly left. She knew without asking that I really wasn’t up for visitors. My Friday Night Zoom Crew sent tons of Chinese food for when I regained my appetite, and my friend Karen sent the best chocolate cake I had ever tasted. Very quickly I started to regain my strength.
A week later I saw my surgeon again. The pathology report wasn’t perfect, yet she was confident that I didn’t need any further intervention. The report said it was a Grade 3 tumor and my margins weren’t clean as “a minute focus of carcinoma was present”. She gave me orders for tests in six months and told us that we shouldn’t worry about going on a trip to Iceland that had been pre-planned for months. Her only restriction was no Blue Lagoon for me and to take it easy on the hikes. I was to listen to my body and be careful.
While happy that going on our trip was going to work, I vigorously questioned waiting six months for the next tests believing that not checking earlier was going to be unbearable. The original tumor was a fast growing type and I imagined cancer cells regenerating at the margins and was convinced that the test in six months would show that the cancer had invaded the rest of my kidney. She was firm explaining that it wouldn’t show anything earlier and six months would give us better pictures. After talking to two other doctors who reviewed my records, we decided to just take the win and accept her advice.
Three weeks after surgery Bruce and I got in our car, drove to BWI Airport and were off to Iceland. On the drive to the airport I started to get a weird pain on my side but didn’t tell Bruce. I decided it was ridiculous and I was imagining it. It was the right decision. We had a spectacular trip. I literally stood under a rainbow one day. That probably was the best moment of our trip. Pure beauty and joy surrounded us.
When we got home that little twinge on my side appeared again. It wouldn’t go away. My general practitioner was convinced it was real and wasn’t muscular so ordered a CT Scan for early November to rule out diverticulitis. I secretly thought to myself that I had gamed the system. I was getting my CT Scan after three months after all. I decided diverticulitis we could easily deal with and I wanted to be sure it was nothing more serious.
I took the test and as my surgeon had predicted, while there were cysts on my kidneys, they were too small to evaluate. So while nothing “bad” showed up, I was back at square one. After being on a restricted diet for weeks, I didn’t have diverticulitis either. Fortunately the pain has mostly dissipated and may just have been a muscle problem after all.
Life proceeded relatively smoothly for the next couple of months. I celebrated turning 70 which is a head game all by itself. We were excited when Wes was elected Governor and I was asked to serve on his transition team. David and his family visited for Thanksgiving and we had fun having all ten Turnbulls together. But we knew another shoe was about to drop.
That issue was bubbling up fast and furious. Our son Josh was finalizing a completely unanticipated move with his family to San Diego. At the beginning when this came up as an opportunity, I was devastated. I couldn’t contemplate the future and being in Maryland sick and old with both of our children and their families on the west coast. I was always sorry that our children hadn’t grown up living near either set of their grandparents. They never knew my father and can only remembered my Mother living in a nursing home. On top of it, we were still smarting from COVID’s forced separation from David and his family in Portland which had been awful. Since Josh’s children have been only minutes away their entire lives, we are used to their weekend little league games and the quiet hours of just watching them build towers in our living room or painting with me at our kitchen table. But, as the months passed and this coming July’s move was scheduled, Bruce and I both realized the opportunity was too good for him to pass up. We started a Redfin addiction with him and eventually concluded that we would look for a place in San Diego for ourselves for extended visits once they relocated. The transition from dread to semi-excitement was a definite process.
By the time January rolled around, we were anticipating my originally scheduled scans which had been on the books since July. So when Johns Hopkins radiology cancelled my scans I was both alarmed and convinced it was an error. My surgeon’s office explained that again, three months wasn’t long enough between scans and now I needed to reschedule for May. Ugh. I hadn’t really gamed the system after all. I just had three more months to be nervous and depressed.
I can’t speak for everyone on how they handle cancer. I can only speak for myself. For me it has been life-changing. I got good advice early on. Immediately after being diagnosed I called a therapist I had seen during other difficult moments in my life. She walked me through the first weeks of this new reality and told me to avoid making it catastrophic. When I tearfully told her that I had always imagined growing old with Bruce she made me keep that image in my head and block out the others. She reminded me to take care of myself and not push myself too hard. Then after a few weeks she told me she thought I had the tools and the personal support to handle what I was facing and that I didn’t need her. I was reluctant to fly alone, but knew that I could.
For the last nine months I have found it almost impossible to confide in even those closest to me about the extent of my fears. I have wanted to almost appear nonchalant about my medical condition. After all, you are born with two kidneys, and I had a “good cancer.”
I got up yesterday and had a sense of calm I hadn’t expected. I drove myself to my appointment for the chest Xray and CT scan. Usually the nurse or technician has a hard time either taking blood or inserting an IV. This time she did it easily. Fast without a bruise. First was the chest Xray. About 10 minutes later a CT scan with contrast flowing through my veins was administered. After an initial expected heat warming my body as the contrast fluid was surging I was suddenly cold with chattering teeth and the technician placed a heated blanket over me. Then in minutes, the tests were over.
As I was leaving the room the technician told me to expect the results later in the day. I told him that is how this all got started — with tests popping up on MyChart. He just shook his head.
I wasn’t even out of the garage when my phone buzzed with a MyChart message. I couldn’t get into the site so drove out of the garage and parked around the corner. The chest X-ray results were normal. Step one a success! I called Bruce and texted my most cherished friend who had already texted me to see if the scan was over. I was relieved and hopeful. That very first night we had learned that kidney cancer often metastasizes first to your lungs.
Ten minutes later, before I even got home, my phone buzzed again but this time I didn’t even try to open it. Instead I went and stayed with my plan to pick up a suitcase that we had taken for repair. Then I drove home. Having had tons of fluid all morning, as I walked in I called to Bruce that I had to go to the bathroom, and I would come in afterwards. A minute later, I walked into his home office and sat down on the couch to open my phone. I needed him to be there with me.
Scanning the results I looked for the bottom line. It was there — exactly what I needed to read -“No evidence of recurrent or metastatic malignancy.”
We hugged and then I texted those most dear, had a bowl of my favorite cereal for lunch and came upstairs to my favorite room and finally started putting into words my thoughts about my last nine months. In one sense It felt almost as good as the way you feel after you throw up. You’re not exactly all better but you sure are glad that nausea is over.
I am lucky that ten months ago my body gave me an unexpected clue that pushed me to get the medical attention that changed the course of my disease. If not for that original CT Scan, my prognosis could have been very grim. At the same time I am immensely grateful that my cancer journey to date has not been nearly as difficult as so many others and I know that the road ahead will likely have many twists and turns. My guess is that every time I stand at an Xray machine or lay on a CT scan I will wish I wasn’t standing or laying there. Still, I hope that I have those uncomfortable days annually for many many years. I am very lucky.
For now, I’m good. I am going to push myself to turn the page and get back to being fully me again. I’m going to write more and worry less. After all, I just got to ring my own bell.
