April 15, 2009
We had a 4PM appointment with Dr Urken & Dr Okay. It was an easy drive into town. We went right in to the “inner sanctum” waiting room as we normally do. There are 2 waiting rooms. One when you first come in the door and the secretary desk is there. She admits you to the next waiting room. That waiting room is in the middle of all the activity, Okay’s examining rooms on one side, Urken’s on the other, and the staff of nurses, office assistants and the first waiting room On the 4th side are windows on the world of 14th Street & Union Square Park.
That second waiting room is where the doctors patients wait, their faces in all shapes of reconstruction. You might see a woman with no bottom jaw, her face compressed. Then hours later, you see her emerge with a jaw, smiling. The outside waiting room spares newcomers this vision. It is for the newbies and their families, people about to discuss their options with the doctors, and the families of people in process who don’t want to cross the threshold.
I gave Mom a massage while we waited and she fell asleep in the chair. I chatted with a couple of daughters accompanying their moms. After a while, we went into the examining room to take Mom’s blood pressure & weight. Her bp was 120/60–perfect!
Dr. Urken came in and said to Mom, “How are you feeling? Alright? Good? Just like it never happened, right? How’d your weight? Still going down? Is it stabilizing? Good. What’s happening with your nose?”
Mom said, “It keeps getting stuffed up.”
Urken: “It’s crusting from the radiation. Are you using the saline drops? You need to use them 10 times a day. Keep it lubricated. The radiation is going to affect that for months. Your eating is improved? Good. How about we take a look?”
Mom got in the examining chair and felt around her eye. “That hurts all the time,” she said. “It’s numb.” He took tweezers and picked at the scab. “Open your mouth wide,” he said. “I’ll take a look at the roof of your mouth when we take the prosthesis out.”
Mom: “There is a sore spot at the roof of my mouth.”
U: “Yes, I know. About the eye, there is some exposure of the bone I put in. We’ll address it and I’ll talk to Okay. The numbness is normal. Over time, the nerves will come back.”
M: “What about my hearing?”
U: “What did the audiologist say?”
Me: “She said the hearing was gone.”
U: “That probably won’t come back.”
I briefly told Dr. Urken about Mom being dehydrated, the mesoprostal that stopped the radiation effect, and the metabolic nutritionist that gave her the infusions. He didn’t say anything, ask any questions, or take any notes.
We went back to the inner sanctum and waited. I was able to read an entire National Geographic, April 09 issue. Mom slept in the chair, arranging her coat as a pillow.
They found a baby mamouth in Siberia 60,000 years old. Not just bones but skin, hair, toenails & all. Frozen solid. An article on Tibet as ShangriLa. And rooftop gardens. I have the perfect roof for a rooftop garden with a wonderful view of the Hudson River. But do I want to walk up 4 flights to get to it? It would be healthy…
We went into Dr. Okay’s office. Mom slept better in the more comfortable examing chair. I pondered rooftop gardens & read the article again. I could have a porch up there. A windmill. A hot tub…
Dr. Okay came in. “How’s she doing? Take out the prosthesis. I will soak it and Isla will come in to clean it up nice.”
Isla came in and began cleaning Mom’s mouth. She was shaking so I held her hand. Afterward, she wiped tears from her eyes. She said it didn’t hurt, though.
Dr. Okay came back in and Mom put the prosthesis back in.
“It fits well” Dr. Okay said.
Mom said, “There is one spot that hurts when I put it in.”
“How many times do you take it out and clean it?” Dr. Okay asked. “Just once? I want you to do it twice a day. Brush your teeth with the prosthesis in place. 3 to 5 minutes massaging your gums with a soft brush. Then take it out and clean it so it’s nice and pink. As soon as you get everything clean, you’re going to feel better. Take a minute, a full minute to clean it . A minute is a long time. Two times a day. And take a wash clothe to your face and clean it. You’re going to feel better.”
“I wash my face,” Mom said.
“What about the spots on Mom’s face,” I asked. Brown spots had appeared on Mom’s face along the hair line, especially on the right side.
“It’s from the radiation,” Dr. Okay said.
I then told Dr. Okay about the mesoprostal in a little more detail, how it stopped the radiation thermal effect and mom was able to get out of pain.
“What was it?” he asked.
“It’s called mesoprostal,” I said.
He didn’t ask any more about it or take any notes either and he left the room.
Mom asked, “Why did he ask me if I wash my face?”
“I don’t know. Maybe he was referring to exfoliating the skin. I have something I can give you for that,” I said.
“We didn’t ask him all our questions,” Mom said.
“He’s coming back. Let’s make a list,” I said.
So we made a list.
Dr. Urken came in and Mom took out the prosthesis so he could look.
“We have more questions,” I said.
Dr. Urken said, “He’s got the answers (meaning Dr. Okay). I’m done with my answers.”
So when Dr. Okay came back, we asked our questions.
Mom: Should I see my regular dentist?
Okay: Yes, that’s a good idea. Get a cleaning. The dentist should take out the obturator (prosthesis) and clean it. If he’s not comfortable doing it, use a dentist who is.
Mom: When are they going to fix my eye? It’s all grungy looking.
Okay: It’ll heal. It’s too soon.
Me: Will the Therabite break Mom’s prosthesis”
Okay: No.
Mom: Every time I put the prosthesis in, there’s a spot that hurts.
Okay: Brush it with something warm, warm water and a soft toothbrush.
Then Dr. Burchbinder came in to examine Mom.
He asked me, “When did the nose get like that?”
“What do you mean?” I asked.
“It looks like there is a piece missing. See. If you look closely, it doesn’t look like the other side.”
I looked and it didn’t look like the other side. I did notice it before. It was as if there was a little bite out of it, right next to the sore spot.
“During the radiation, it was constantly dripping and Mom was cleaning it all the time,” I said.
“The bone is showing,” he said.
“What do you mean?” I asked.
“Here, below the eye. See, this is bone,” he pointed to a gray area about the size of a pinhead. “And this bit of purple here, this is the mesh we used. It’s showing too. The purple is just gunk. We’ll pull up the skin below the eye and cover the mesh. We’ll have to shave the bone.”
“That sounds big,” I said.
“Oh no, it’s not big. It’s a small procedure,” he said. “We have to let things quiet down first.”
Dr. Buchbinder left. I asked Dr. Okay out in the hall. “Are we done?” He said yes.
I grabbed a nurse and asked her to let the chair down so Mom could get down. She did and we made an appointment for 1 month from now, May 13 at 2 PM
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Tags: cancer support, head and neck cancer, hospital, radiation treatment
