(Editor’s note: This is the fourth in a series of special reports by the Baltimore Liberal Examiner detailing one family’s discovery, treatment, and recovery from oral cancer and what you can do as a potential cancer patient to stay aware.)
It’s just after 7pm and Bill is exhausted.
“I can only imagine how Gail feels,” he said. “What am I talking about? She’s probably asleep.”
Today makes five weeks since the day Gail’s first ENT doctor called with the news that the sore throat and earache she had was, in fact, squamous cell carcinoma of the oropharynx — tonsil cancer. According to the Maryland Department of Health and Mental Hygiene’s Family Health Administration, Gail had joined an elite minority. In 2007 (the last year for which figures are available), there were only 572 new cases of oral cancer in Maryland. Of those, only 174 were women.
For most of the day, Bill has been manning what he calls “Cancer Central” in his hotel room, keeping far-flung family members informed as his wife of nearly 24 years went under the surgeon’s knife at the University of Maryland Medical Center in Baltimore.
The day started early. Gail got up at 4:30 am to take the second shower with the special disinfectant scrubby they gave her last week. By 5:20, they were seated side-by-side in front of the hotel, waiting for the limo that was scheduled to cart them to the medical center.
Bill looked at the clock on his cell phone. “5:30,” he said to Gail. “I’ll give him until 5:35, then I’m gonna wake up that cab driver.” The driver snoozed in the driver seat of his cab, unaware of his near brush with wakefulness as the promised limo rolled up the driveway.
Things moved swiftly. No sooner did the couple arrive at the “Same Day Surgery” office than Gail was whisked away to be prepped. She told Bill the nurse would come and get him when she was ready.
Once she was gone, Bill felt it was OK to help himself to a cup of life-giving coffee. Gail was under orders, no food or liquid after midnight. Out of solidarity, Bill eschewed his usual morning eye-opener of caffeine. With Gail being prepped and out of sight, what was the harm?
Soon a nurse came into the room and said, “William…” and then she attempted to say his last name. “I’ve come to recognize when people do that, they’re looking for me,” he said.
The nurse took him to the OR-Prep room where his bride was decked out in a gown and cap, IV installed, ready to roll.
They held hands and made the kind of small talk a couple makes when they know and love each other as well as they do.
At around 7am the room filled with doctors and anesthesiologists. More questions, more consent forms, more risks explained. The head ENT guy showed up and told Bill that this surgery would likely be an all day deal, and that if he wanted to just go back to the hotel and wait, he’d probably be more comfortable. The doctor promised to call him after the surgery.
He explained they would do the neck dissection first — finger through the lymph nodes on the left side of her neck, excise a few, send them to the lab to be tested for the presence of cancer cells. Then they would do the robotic portion of the surgery. He explained again that Gail would wake up with a tube in her nose and probably a tracheostomy.
At 7:15 am, the team rolled Gail’s bed out to the hallway, down the hall and to the OR. Bill told his wife he would love her until the day he dies. Then he watched as they rolled her down the hall, through the double doors, and out of his sight for the rest of the day.
Bill went to the third floor waiting room, called “The Healing Garden” and checked in with the staff. He told them he was going back to the hotel and that he would call every other hour or so to see how Gail was doing.
After getting a large (he refuses to call them Venti, he said) Starbucks Cafe Mocha with an extra shot, Bill rolled his walker to the hospital’s front door and the hospital’s courtesy limo took him back to the hotel.
The rest of the day consisted of Bill making a call every other hour to the Healing Garden. The first call informed him that the neck dissection had started at 8:11. Then, he was told a couple hours later that the neck dissection was finished, Gail was doing fine, and they were getting ready to start the robotic portion. At three he called again, and they told him the tumor was out, they were testing for clean margins, and Gail would be moved to the recovery room soon.
He was ecstatic. He wrote to his friends and family members via e-mail and Facebook:
HOT OFF THE PRESSES!
THE TUMOR IS OUT! They are just waiting to get a report back to make sure they got clean margins. Once they have that, they do the cleanup work, and Gail will be sent to the recovery room. But the tumor is out, out, out, out, and we will just hope they got it all!
Next update around 4pm. Something for everyone to focus on. The doc told us some time ago that if the lymph nodes were clean (we won’t know for awhile — days, I guess — and they get clean margins on the tumor (cut til you get to good meat, like my late father used to say) then as far as he’s concerned… we’re all done! Bye-bye cancer. She will have to be checked on a regular basis for about 5 years to see if it pops up anywhere else, but if they got rid of it all before it got into any nodes, we’re gonna declare victory and put up the ol’ Mission Accomplished banner!
Shortly after sending that optimistic memo, his cell phone rang. An exhausted-sounding surgeon was on the other end of the line.
“He told me Gail got through the surgery just fine,” Bill said, somewhat subdued. “The tumor came back with clean margins, so they got it all. She was just now waking up, and she did not need a tracheostomy, which will make her happy.”
“But the tumor was larger than they thought it was.” Between the two biopsies, more than 2 cm of the tumor had already been carved away. “The doctor said it was in the ballpark of 4cm.” That would kick the “T score” described in Part III of this series from T-2 to T-3. Even if no lymph nodes are involved, that automatically would kick Gail’s cancer stage up from Stage II to Stage III.
“I asked the doctor about the lymph nodes, and he said we’ll just have to wait and see,” Bill said. “There was something in his voice that made me suspicious, so I pressed him on the subject. This guy has done hundreds, maybe thousands of these surgeries. So I asked if there was anything in any of the nodes that drew his attention or made him suspicious. He hesitated and said something like, ‘Well, I didn’t see anything huge, but there were a couple that didn’t look right.’ Then he quickly added, ‘But we’re just going to have to wait and see.'”
If the tumor is a T3 and only one node is involved, it stays as a Stage III cancer. If two are involved, then Gail has a Stage IVa cancer. More than two? Stage IVb. But at the moment, Bill and Gail seem to find themselves confronted with a Stage III cancer — at best.
“Still, it could be worse,” Bill said. “It could always be worse.” He pointed out a web site that showed about 720,000 people 65 and under in Maryland were uninsured. “What happens to those poor bastards if one of them comes down with something like this? I mean, the co-pays are going to sting and that’s no fooling. But at least we’re insured. This won’t wreck us.” He chuckled. “It may kill us, but it won’t wreck us!”
He shook his head as he picked up his cell phone. “At least if the Bush Tax Cuts are extended, J.P. Gottrocks will be able to afford that ermine coat for the woman he sleeps with while cheating on the woman he cheats on his wife with. That’s money well spent.”
Bill called the Healing Garden again at 4 p.m. They told him Gail was in the recovery room, and they gave him the number. In the recovery room, they asked Bill to call back after 5. In the meantime, Bill sent out the word to family and friends on e-mail and Facebook, called his 81-year old mother and his younger sister, and took a pill for his Parkinson’s disease symptoms.
He called the recovery room at 5, and the very nice nurse told him that Gail was as comfortable as she could reasonably be, she could speak but only very hoarsely. She had a nasogastric tube and would for a few days. She told him that Gail would be transferred to her room on the cancer ward at about 7. She gave him the room number but told him to call back before going to bed to make sure that’s where she went because these things change sometimes and a patient ends up in a different bed.
His day’s duties completed, Bill plans to get a cab to the hospital tomorrow morning at about 10 and visit his wife as much as she can stand. He will see how things go before deciding to share any further information with her.
In the meantime, the wait begins for the pathology report on the lymph nodes.
Follow Bill and Gail’s cancer journey on the website Famous Squamous. You can follow the Baltimore Liberal Examiner by clicking the subscribe link right below his byline or by visiting his brand new website. Follow him on Twitter and Facebook as well.