(Editor’s note: This is the third 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.)
This column was born at 9:20 a.m. on Monday, March 12. When Gail’s son T.J. gets home from work this afternoon, he is going to drive Bill and Gail into Baltimore where he has booked a room at one of the downtown hotels. There, they will spend a quiet, dog-free night.
Dog-free. That’s important. Gail will need all the rest she can get on the night before her surgery.
“She’s one of those gals who gets up to the call of nature every few hours and, as long as she’s up, she takes our two head of dog outside,” Bill explained.
It’s a fine herd of dog they have at Bill and Gail’s Dirt and Dog Ranch in Elkridge, Maryland. A fine, distinguished, 7-year old neurotic border collie named “Raven,” and a psychotic, future mass-murderer who is just too cute to stay mad at, our baby German Shepherd, 5-year old “Shiloh.”
Bill plans to will hold on to the hotel room through Friday morning. “After 12 years with Parkinson’s disease, I can no longer drive,” he said. “For those first few days, I want to be close. I don’t want to have to wait for T.J. to get home from work or wait around for a taxi if there’s an emergency. I want to be minutes away.”
As T.J. navigated the downtown Baltimore street with Bill trying to give him directions, at the absolute worst moment, his cell phone rang. It was the hospital with the word they were waiting for. As T.J. asked if he should turn right or left, Bill tried to make out what the nice lady with the very thick accent was telling him.
“We’re supposed to be at the hospital tomorrow morning at 6,” Bill told Gail. “Nothing to eat or drink after midnight. You can take the pills you’re supposed to take in the morning with a sip of water. That’s it.”
T.J. dropped them off in front of the hotel (eventually) and gave them both good, strong hugs. Although Bill is not his natural father, Bill has been his Dad since he was five.
The couple checked in, got to their room, and Bill called a limo service recommended by the bell hop so there would be a car waiting for them in front of the hotel at 5:30 a.m.
So, tonight they’ll relax and eat room service food. With Gail’s tumor causing pain and the fact that she can’t wear her dentures because they hurt the tumor, she’ll get something soft. “She’s already eyeballing the room service New York Cheesecake,” Bill said.
“That’s one of the great things about being a grown up,” the normally reticent Gail added. “You don’t have to ask permission if you want to eat cheesecake for dinner.”
Gail took the first of two special disinfectant showers with the scrubby pads they gave her last week. She has to take another one in the morning, so she’ll get up at 4:30. Then, it’s off to the University of Maryland Medical Center, just several blocks from the hotel.
Bill says he will stay with Gail for as long as they let him.
“When they take her back to the OR, the first thing I will do is go to Starbucks and get a big cup of coffee. Then, I will check in with this nice area they call “The Healing Garden” and wait for the doctor.”
Gail is actually having two surgeries Tuesday morning. The first will be done robotically. They call it “transoral robotic surgery” or “TORS”. The University of Maryland Medical Center is a pioneer in this technique. There’s a video attached to this column. That part of the procedure will take about an hour.
The second will be a specialized neck dissection, taking out lymph nodes on the left side of her neck so they can be examined to see if the cancer has spread into any of them. That will take two to four hours.
“Once the doctor comes out and tells me that everything’s fine, I will probably go back to my hotel room and wait until about 4 p.m.,” Bill said. They take family members back to the post-anesthesia area every two hours for a 15-minute visit. “I’m figuring that by 4, she will still be waiting for a hospital bed, but will be awake enough to know I’m there.”
The doctor explained Gail will have a tube in her nose, probably a tracheostomy as well (temporary) and will be unable to speak.
“I just want to hold her hand and tell her how proud I am of her. She is the toughest girl I know, and she will kick this thing where it least likes to be kicked,” Bill said.
Then, he plans to tell the “healing garden” staff to let him know when she is assigned to a room. “Before I go to bed for the night, I will call the staff on that floor and ask how she’s doing,” Bill explained. “If you knew my Gail, you would understand that on this first night after surgery, she’s not likely to want me or anyone else around. She’s a lovely girl. She really is. But after something like this, she’s nobody’s sweetheart. And she won’t be able to talk. I’ll give her that first night to just rest completely, then I will start visiting the following morning.”
It’s likely that they won’t get any information about the lymph nodes for a few days until pathology is done with them. The staging of her cancer depends on what is or is not in the lymph nodes.
Keeping it simple, one needs three bits of info to stage a squamous cell carcinoma of the tonsil — the size of the tumor, the number of lymph nodes it has spread to, and whether or not is has spread to a distant site.
As far as they know right now, Gail’s cancer is Stage II with a tumor around 2cm, no nodes, no spread.
The size of the tumor seems to have less to do with the staging than the number of nodes affected. For instance, even at the same size, if there’s one lymph node affected, that kicks Gail’s cancer up to Stage III. Two or more nodes? Stage IV. And even if there’s a microscopic speck of cancer in a lymph node, that means the node is “involved.”
“We will just have to wait and see,” Bill said.
As Bill discussed the array of state of the art surgical technology and know how the University of Maryland will bring to bear to care for his wife, he couldn’t help but think about the people who have to be satisfied with less that optimal care.
“It just amazes me that in the United States of America, we can have these wonderful devices. For God’s sake, my wife is going to be operated on by a robot tomorrow! And how many people, right here in America, can’t even get decent health care insurance that will pay to keep them from getting sick in the first place?”
Bill rubbed his eyes. “And now, the Republicans want to tell a woman whether or not they can have birth control.” Anger flashed in his eyes. “What if I worked for some idiot who belonged to some religion that said cancer is ‘God’s will’? And fighting cancer meant fighting God. Would this guy have the right to deny my wife’s surgery because he thinks God wants her to die? What are we coming to in this country?”
His mood lightened as he changed the subject.
“I bought her a friend to keep an eye on her when I’m not there,” Bill said with a smile. “His name is Therap E. Tiger. I have placed him in charge of her security. I also got her a bunch of her favorite supermarket gossip rags for when she feels up to reading.”
On Wednesday, Thursday and Friday, Bill plans to visit her as much as she can stand. Otherwise, he will allow her to rest. “I can extend my hotel stay if I need to, but right now the plan is to have T.J. pick me up at the hospital Friday afternoon,” Bill said. If all goes according to plan, Gail will be released Saturday, Sunday or Monday. “My main job then will be keeping the dogs off of her so she can rest up and heal,” he said.
It’s 6:03 p.m. now. Gail is relaxing, watching TV. Bill is noodling around with the computer. Just like at home, Gail suggested. In a few minutes, Bill will order room service.
Then tomorrow morning, they will take the next step in this long, hazardous journey. They will take that step together. Bill and Gail seem to take a great deal of comfort in that fact.
In Part IV: The surgery and the aftermath.
Bill plans to liveblog as much of his experiences tomorrow as the hospital’s wi-fi will allow. You can follow his and Gail’s progress at Famous Squamous or Bill’s Facebook page.
Stay up to date on the rest of the day’s news with the BLE. Either subscribe to his feed by clicking the link below his name, or visit Deep Brain Media.