THE BEGINNING:
It was November 2018, and all was well.
David and I had celebrated our 25th anniversary in St. Augustine the month before with sunset cruises, sangria tours (of our own making) and afternoon naps. We headed to South Carolina for Thanksgiving at David’s sister Lisa’s house. We all rode together in the RV, David and I, Jonathan (our 12-year-old son), Jeanne (David’s mother who lived across the street from us) and my daughter, son-in-law, and their (then) six-month-old baby, Lukas. Not to mention the pets that accompanied us: Cocoa and Lily, lab mixes, and Jeanne’s dog, a Pekingese mix.
In a story about Sarcoma, why mention this? Why all these details about who went to South Carolina to visit my sister-in-law’s family of four with two big dogs? IT WAS OUR LIFE. Always lots of family. Always chaotic. Always loud. Much, much laughter and poking fun and being silly and singing loudly and quoting movies.
Upon our return home, we began home improvements. The house needed a new roof, new windows—all sorts of things that you set your eyes on once you have the loan money waiting in the bank! On Valentine’s Day, we had a home fondue dinner and listened to the roof being replaced above our heads.
At the first of March, David was selling one of our ATVs and helped the buyer get it into the bed of their truck. When he took a shower later, he noticed a small bump in his clavicle area on the left side. As a man who had previously shattered his ankle, and was a regular to doctor’s appointments, I am surprised that we decided that he would go see his doctor. But he did, and his general practitioner said it did not look serious and to just keep an eye on it and come back in a month if it grew larger.
David had noticed the lump getting bigger and went in on March 28th so the doctor could take a look. A CT scan was scheduled for April 3rd. In the meantime, I went to North Carolina for the weekend to see my sister for her birthday. The same day I arrived in North Carolina, the doctor let David know about the mass and said an MRI needed to happen right away. Their office had no availability, so he had to go to another imaging center in Tampa. The sudden concern and urgency had us all anxious.
The results came in a few days later, and we followed up with the doctor, who recommended a surgeon to biopsy the mass. Many who are familiar with medical issues know that the time between that Thursday until the appointment with the surgeon on the following Tuesday were some of the longest days. The CT scan had stated “Neurogenic tumor is a favored diagnosis. The differential diagnosis includes lymphadenopathy and sarcoma.” Having never heard the word sarcoma, I googled it. In my fast google search, I did not see the recommendation that if there was a chance this was sarcoma, we should have gone to a sarcoma center. (Ironically, a major Sarcoma specialty center is 20 minutes away from our house at Moffitt Cancer Center.)
When we saw the surgeon, he tapped on the lump and said it was soft tissue and there was not any reason to just biopsy it, he could remove it and then send it off for a biopsy. At that time, it sounded good, honestly. “Just get it out of me,” my husband was muttering. The surgery was scheduled fast-two days later.
As we went into the surgery, we were in good spirits. This tumor would be removed, and we would be back to our normal lives. When I look at our faces that day, I am glad we had no idea what was to come. I am grateful for the last moments of feeling in control and that it all would be okay.
A WORD OF CAUTION: We’ve chosen to include a few photos of David’s tumor at the end of this story to provide education about why one should take a lump seriously when it appears anywhere on the body. It was included not to startle or upset people, but to honor David through teaching others to be body aware.
THE MIDDLE:
As the surgeon walked out to talk to me in the empty waiting room, I had a pit in my stomach. I knew something was wrong. He said, “Sorry, I’m pretty sure your husband has lymphoma. That was the weirdest tumor I have ever seen; it had an arm.” Lack of bedside manner notwithstanding, I felt nauseated. David came through the surgery well and we headed home, with the information that the tumor would be sent off for testing to see what it was.
Five days later, the incision site was swollen and draining. We thought there might be a problem, but it never occurred to us that the tumor was growing back immediately. It did not occur to the surgeon either as he gave us instructions on wound care and noted on the paperwork that it was healing.
The tumor continued to grow, and pathology was delayed for a few weeks. We were told the type of cells were difficult to identify.
David was turning 51 on May 8th, so we planned a little getaway at a hotel in town. We ate at a fancy restaurant and saw our favorite America’s Got Talent comedian. The time was strained and somewhat bittersweet…it was like we were on the edge of a cliff, steady on the edge, but knowing we could fall forward any minute. The surgeon’s office called while we were there and scheduled a follow up to discuss the pathology.
On May 7, we headed from the hotel to the doctor’s office. We were told that the tumor was a “soft tissue sarcoma with rhabdoid features.” The surgeon said that the oncologist I had chosen would be fine and he would send the lab reports. (I was planning, after the straightforward announcement in the waiting room, to have an oncology appointment waiting once we heard the results)
About five minutes after leaving the surgeon’s office, with my husband speechless and with tears rolling down his face, I found out two things that would make our journey so much more difficult: First, a general cancer center cannot treat sarcoma. They were very direct and said they were canceling the appointment I had made. Second, our insurance was not accepted at the Sarcoma center 20 minutes away from our house.
THE END:
We had no idea in May that we were already at the end. There would be flickering moments of doubt-was it possible that he could recover from this now massive external tumor?
But David was chanting “I will get through this” with such certainty that we all believed. May and June were a whirlwind: getting a waiver from the insurance company to cover Moffitt Cancer Center so David could be treated. Calling in every favor from my huge family and friend base to get David in to see the Chief Sarcoma specialist a full month before an appointment was available through the system.
By the time he was having radiation to try to reduce the size of the tumor and stop it from growing, he already had metastasis in his lungs and spleen. We later found that we were among many families that discovered the sarcoma with an “oops” surgery…a surgery intended to remove and biopsy a tumor that was not a rapidly growing sarcoma.
Radiation did not stop the growth or shrink the tumor and during this time there were several emergency trips to the cancer hospital because he continued to get infections from the large open tumor.
He would feel somewhat better for a few days, and then have symptoms of infection and be back in the hospital. Through it all, our goal was to have him make it to chemotherapy, which was the only thing that could possibly stop the cancer.
One of my dear friends made it possible for us to celebrate the Fourth of July by setting up her condo and a place for David on the beach with a short walk. The surgery to remove the tumor was the next day, July 5th. Although he was so weak as I look back on it now, I just kept maintaining the hope that it was all going to be better soon.
The removal of the tumor went well, but before he went into the operating room the surgeon let us know that with the testing that just happened, the cancer had spread to more places in his lungs. But he came through the surgery just fine. We had a little “Lastinger Family Reunion” in the hospital room. All was good-we were feeling hopeful.
David was home from July 8th to July 11th, then we had an appointment to have a port installed for his chemotherapy…we felt like after all this time we were FINALLY going to do something that would actually kill the cancer cells that were growing so rapidly in him. We arrived at the hospital to find he was weak and feverish. And had sepsis.
The days from July 11th to July 2oth had ups and downs. There would be moments where my sister and I would look at each other and say, “Is this the end?” and then he would look up with a charming smile and say something so incredibly lucid that we just did not think there was any way this was really the end.
Then on the 20th I came into the hospital with a bounce in my step because my mom had stayed at the hospital overnight so I could get my first night’s sleep in my bed in quite a few days. Seeing the Chief Sarcoma specialist walking toward me in plain clothes stopped my chipper feeling in its tracks. He let me know that David was not going to get better, and it was time for hospice. He and his assisting doctor cried with me. I told David minutes later and I can only really describe his reaction as relief.
He left the hospital with my daughter, my sister, and I sobbing and wailing as they rolled him into the transport ambulance for the trip home. My friend came through again by preparing our house for his arrival and setting the hospice bed in the living room.
He arrived home at 730pm and we spent the night saying goodbye, but he was not able to speak, and his eyes were blank. Everyone went to bed and I cuddled up against him and told him he had given me everything I ever wanted and how much I loved him, and when I woke up at 4am, he was gone.
AFTER THE END:
As I sat in my late husband’s favorite recliner today, I asked myself why. Why would I put myself through telling David’s story when he is gone? His energy, charm, generosity, and love for life-gone. From Sarcoma diagnosis to death, just over two months.
The answer is simple-one word: AWARENESS. Had I read a story like this, I would have insisted on a Sarcoma specialist once that word showed up on the CT scan results, rather than letting a general surgeon operate. Awareness about Sarcoma must increase, so lives will be saved.
David would have wanted that, I know.
