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Debra’s Story
Site created on July 28, 2020
Deb and I will be married 38 years this September. Several of my friends have tried to pinpoint a word that describes her. The word that generally comes to mind is vivacious. Throughout our lives together, she has always been my cheerleader especially when I received a heart transplant 8 years ago. Deb was recently diagnosed with ovarian cancer. Now, our vivacious friend needs us to cheer for her!
Deb’s clinical history is that she had back pain for over the past year. She had imaging studies that showed lumbosacral (lower back) arthritis that was not amendable to surgery. She has had physical therapy, massage therapy and chiropractic maneuvers with short term relief as you would expect with an arthritic condition. Ibuprofen would also help alleviate the discomfort. We just assumed it was a problem Deb would have to live with and manage.
Fast forward to June 2020, while at our home-to-retire-to in South Carolina, Deb noted an uncomfortable pressure in her right lower abdomen. While driving on our return trip to our home-to-work-from in Maryland on July 13, she called and made an appointment for July 15 to see our family physician, Dr. Singh. He is a great general practitioner who works as an ER doctor at the University of Maryland in Baltimore….a man in the trenches. The appointment was at 3:30. He palpated Deb’s abdomen, called a friend who owned an imaging center 5 minutes from our home, and Deb had an abdominal ultrasound by 5pm that showed a 17 cm (approx. 7-inch mass), predominantly cystic, right ovarian mass. Dr. Singh then ordered an MRI with contrast for the following day, Thursday July 16. This imaging study confirmed the ultrasound findings with the lesion suggestive of malignant cancer. The good news was there was no signs of enlarged lymph nodes, ascites (free fluid in the abdomen), no signs of other organ involvement or metastasis (tumor spread) in the abdomen or pelvic canal. The tumor was well encapsulated which was a positive for less aggressive lesions.
It was clear Deb was going to need surgery. Deb contacted her gynecologist immediately for a referral. Meanwhile, I checked the institution that saved my life, Johns Hopkins (JH) and learned that their Kelly Gynecologic Oncology Service is a top 10 program in the US. I reached out to my transplant cardiologist who is now at Duke, and my JH transplant coordinator to see which gynecologic oncologic surgeon would be recommended by colleagues at JH. Both came back with Dr. Rebecca Stone, Director of the Service…. Dr. Stone received her undergraduate degree in biology from the University of Virginia. She earned her medical degree from the University of Virginia School of Medicine, where she subsequently completed her residency in obstetrics and gynecology. Dr. Stone performed a four-year gynecologic oncology fellowship at the University of Texas MD Anderson Cancer Center. Sorry Hokie fans!
I called her office for an appointment on Friday, July 17 and was told the earliest available appointment was August 10. No waiting list, but I could call as often as I wanted to check for a cancellation. Knowing that appointment coordinators know each other, I contacted the heart transplant appointment coordinator, Nicole, to see if there were any back doors into Dr. Stone's schedule. Nicole suggested it might be more effective if one of the transplant coordinators sent an email to Dr. Stone.
After transplant, your coordinator is your life line. It is such a tough process and adjustment for your body, your family, and you personally, that the transplant patient needs a “professional” friend to go to for all kinds of questions and problems. If you don’t become their friend, something is wrong! Kate Shagena and Deb Carter are great transplant coordinators. Kate is my primary coordinator to this day, and always, but she was on vacation. I got Deb Carter on the phone and I had a “big ask”: Would she contact Dr. Stone, who she did not know, and ask if it might be possible to see Deb sooner if there was a cancellation of if the symptoms and imaging results warranted an earlier appointment? Within 10 minutes of Deb Carter sending a very kind introductory email, Deb called me and said her appointment had been moved to Monday, July 20. Dr. Stone had written back to Deb Carter that she indeed wanted to see my Deb sooner based on the size of the lesion.
I drove Deb to her appointment at JH but had to wait outside due to COVID. We had a conference call and Dr. Stone commented how unusual it was to have a well encapsulated, movable, cystic mass that was malignant. We, Dr. and patient, were hopeful that perhaps the lesion was not malignant, since the whole “malignant puzzle” didn’t fit together. Overall, since the diagnosis of the mass to the time of seeing Dr. Stone, every variable had been in Deb ‘s favor for a successful outcome. Deb needed surgery, and Dr. Stone had cleared her appointment schedule in order to perform the surgery, which was done this past Monday, July 27.
Monday was a long day for everyone, especially Deb. She had a 4.5 hour surgery. The lesion was a malignant ovarian cancer that was encapsulated by what appeared to be non-cancerous tissue. A small nodule was trying to “poke” through the capsule but was not in contact with other tissues. The cancer was removed intact without the cyst rupturing, preventing any seeding of tumor cells in the pelvis. Dr. Stone and other doctors involved were quite surprised that all her other organs and tissues seemed completely normal based on visual examination. The preop surgical plan was to remove the mass, uterus and other ovary. Based on the diagnosis, several pelvic lymph nodes were removed for biopsy. Finally, the spleen had a small, non-cancerous appearing nodule necessitating removal of the spleen. Overall, Dr. Stone was very optimistic that all the cancer had been removed and that it was her hopeful opinion that the lymph nodes and spleen would be negative for cancer. We are awaiting biopsy results.
Deb had a rough first night with falling blood pressure (BP) related to the epidural, removing the spleen (it’s full of blood), and the secondary effects of narcotic pain medications. She received 2 units of blood via transfusion. Deb’s BP normally runs low, so the priority has been BP maintenance, however the pain has been difficult to deal with. At the end of the first 24 hours, which are the most difficult postop, she is on a self-controlled dilaudid IV and lidocaine patches on either side of her incision. As of Tuesday night, she is feeling a little better. She sleeps often, which is good, but we’re hoping she starts to eat soon.
The reason I have meticulously noted the timeline for Deb’s workup is to highlight how fortunate and blessed we were for her to receive such great medical care in such a short time. Dr. Stone told me postop that she was extremely grateful that the surgery was done so quickly and that it would have been regrettable if Deb had waited until August 10 for her consultation. It is immensely humbling for me to be able to know one can call upon friends for advice and help when the going gets tough. These friends came through for Deb and I.
When I was first diagnosed with cardiomyopathy, I knew my heart was not fixable. I prayed for a loving heart which I hadn’t fully had, and I knew God could help me attain that goal. But as most humans do, I underestimated the power of God.
From "My Utmost for His Highest" (February 29)
What Do You Want The Lord To Do For You?
“…..Watch how we limit the Lord by remembering what we have allowed Him to do for us in the past: I always failed there, and I always shall; consequently we do not ask for what we want. ‘It is ridiculous to ask God to do this.’ If it is an impossibility, it is the thing we have to ask. If it is not an impossible thing, it is not a real disturbance. God will do the absolutely impossible."
I didn’t rely on God to do the impossible. Perhaps God laughed at me, and said: “How about a new heart?” And through the grace and love of a young man in Michigan, an organ donor, God did the impossible for me. And now I am asking for you to pray, or reach out in a spiritual way for God to do the impossible for Deb and cure her of this cancer.
I am unable to visit Deb because of COVID. Talking on the phone, I know in her voice that she is hurting emotionally and physically and she needs our help! If you have been through a battle with cancer, or have been there for a loved one with cancer, and have come out the other side, I empathize with what you and your family have been through. Thank you for helping our family. I can already see His hand in Deb’s battle.
We just completed our May visit to MDA. After Deb’s morning CT scan, we had some down time and decided to make the 1-hour drive to visit the Blue Bell ice cream factory. We were able to observe how the ice cream was made and, of course, visit the factory ice cream parlor. So many flavors; so little room in our tummies! A scoop turned out to be a full cup, but we still had several and doubled-down on the salted caramel truffle!
Retrospectively, we considered our ice cream sojourn a “reward” prequel to Deb’s visit today with Dr. Yap when he declared her results “amazing” and that she is his “superstar”! The CA 125 tumor marker continues to decrease to 6.7 from 56 just twelve weeks ago. Dr. Yap commented that it often takes up to a year for metastatic lesions to decrease in size. Her CT scan showed that the tumor volume has decreased by nearly 40% with all lesions either static or smaller. She feels well and has great energy levels including returning to her routine of regular exercise.
Sometimes with such continued great news regarding Deb’s targeted therapy, it’s easy to relax one’s diligent thoughts and prayers for such an outcome. I want to continue to be on the edge with my thankfulness and faithfulness for the blessing of Deb’s response and how we have been guided back to MDA for this life-saving treatment.
So, we are so happy to plan to continue to return to MDA every 3 weeks, indefinitely. I’m counting on the drugs continuing to disrupt the tumor’s DNA, …….along with ice cream to be just the right combination that Deb needs!
Thank you for being edgy with your thoughts and prayers!
So Many Choices!
Let's Taste Some!
