(NOTE: I've just started a new blog to chronicle the journey my wife and I are on, from the diagnosis of her tonsil cancer, through the treatment, to that joyous day when we declare her cancer free. You can find it here if you want to bookmark it and check in from time to time. These are the first two entries.)
MEET GOD'S CHOSEN PEOPLE
I recall a great line from “Fiddler on the Roof.”
“I know we’re God’s chosen people. But once in awhile, couldn’t he choose someone else?”
I think my family has a right to feel that way. My dad died of pancreatic cancer at the age of 54 back in 1983. My twin brother died of a stroke at age 49 in 2004. My older brother died of lung cancer at age 54 in 2008. My oldest sister died of cancer at age 57 in 2009. Cancer has struck other members of my family as well.
And now, it’s come ’round by our house.
Back in November, Gail… my wife of 22 years … started complaining of a sore throat and ear ache. I mean, how serious can that be? She went to see her family practitioner sometime in early January and was given an antibiotic.
It made her sick and did nothing for the earache or the sore throat. So, in early January she goes to see an ENT doctor. He takes one look and has a good idea what he’s looking at. He sends her for a CT scan, and it shows a “mucosal thickening” in the area where her left tonsil used to be. On January 31, the ENT doc takes a biopsy. He calls us with the results on Feb. 7, 2012.
“Moderately differentiated squamous cell carcinoma of the oropharynx.”
If there’s any good news here, the CT didn’t show any lymph gland involvement. The ENT recommends we go to see one of the top guys in the field at the University of Maryland in Baltimore, which we did yesterday.
Here’s how I explained it in a family-wide e-mail:
Hey everybody, Bill here. Just wanted to fill everyone in on the events of the day. Gail would love to talk to you, but they prodded around her throat pretty good so you can imagine she’s rawthuh sore! :)
The good news is, the tumor is small and they think they may have caught it early. It’s just in the left tonsil area (or, where her left tonsil used to be), and they seem to think they can nip it out of there.
So, the plan is this. Tomorrow we will get word on when they’re going to do a PET/CT scan. That’s where they give her an IV of radioactive sugar water and then do a whole body scan. Tumors love this sugar water and they light up like a christmas tree on the film. That’s a way the doctors can tell if the cancer is just in the primary location, or whether or not it’s spread to any lymph nodes or to any other organs in her body. Like I said, tomorrow we’ll find out when that test is. It will be very soon, because…
On Wednesday, Gail goes back to the doctor for a pre-op physical. The reason they’re doing this (EKG to check her heart, lung x-ray, etc.) is to see if there are any problems they should anticipate when she goes under anesthesia… because…
On Friday, they’re going to put Gail under anesthesia and really get in there with scopes and such to have a good look around. Hard to do that when the patient is gagging, so will put her under general anesthesia so they can take a good, close look. By then they’ll have the PET/CT scan results. Then we’ll all huddle and decide what to do next.
If the PET/CT don’t show any other tumor in the lymph nodes or any other organs, the plan would be to cut out the tumor from the back of her throat, then do what they call a “neck dissection.” That sounds worse than it is. It just means they would remove the lymph nodes from the left side of her neck so the tumor they might have missed in the “cutting out” part has no where to go. Cancer travels through the body in the lymphatic system, and if there are no lymph nodes, the tumor can’t spread that way. If the PET/CT or closer exam shows there is a chance that there is some tumor in the lymph nodes, then the treatment will probably be removing the tumor, removing the lymph glands, and radiation therapy. Depending on how many nodes may have been affected, they may add chemotherapy to the list.
But, as I said, the doctor feels pretty confident that this was caught early. The earlier CT scan didn’t show any lymph node involvement, so we’re really hopeful that they’ll be able to take care of this once and for all sometime in the next few weeks.
After we get the word on what the game plan is, I will let everyone know.
Gail is comfortable, just kinda sore as you might imagine from having fingers and stuff jammed down her throat and tubes up her nose and down the back of her throat to take a look.
Much love to all, and stay tuned for further updates.
OK. Now it’s 1:30 Tuesday afternoon. No call yet about the PET/CT scan. I’ll wait until about 3, then I’ll call them. Tomorrow at noon, hippity hop to the hospital for her pre-op exam. Thursday afternoon we’ll check into a nice hotel within walking distance of the hospital
(Gail will not be able to drive after coming out of anesthesia, and I can’t drive because of the Parkinson’s disease — which will not be a topic of this blog). So we’ll have a nice, comfortable place within walking distance for her to rest after the operative endoscopy on Friday.
Things are moving very quickly now. Almost too quickly for Gail, who is having understandable trouble wrapping her head around this whole thing.
I’ll use this blog to post updates.
ONE NOTICES A CERTAIN SENSE OF DISARRAY AMONG THE CLERICAL STAFF AT THE U-MD MEDICAL CENTER
I'm sure they're all just lovely people. But both Gail and I noticed from our first exposure to the U-Md. ENT Clinic yesterday that there's a certain, well... "attitude" among the clerical workers at the place. Let me see if I can sum it up for you in three letters.
"DMV"
We were told to arrive early yesterday. We did. Gail was told to sign the "sign in" clipboard. She did. Her appointment was at 10am. She wasn't even called back to have her vitals checked until 10:50.
Once we were with the medical staff, all went well, all went smoothly and we couldn't have been happier. Then the doctors suggested that we wait out in the waiting room until the OR scheduler could meet with us. This was at about 11:20 am.
At about 11:45 the scheduler came out and gave Gail a bunch more papers to fill out. For the third time that morning, she had to fill out a long list of medications she takes, what diseases she has experienced, operations she's had... blah blah blah. Why can't you fill that out once, and then have that info migrated to every other form they need filled? We asked the scheduler when Gail was supposed to have her PET/CT scan.
"Pep scan? She's supposed to have a Pep scan? Pep scan?"
She said she'd look into it and took off. Gail filled out the paperwork.
At about 12:15 the scheduler came back out to deal with another couple. Looked at us, pointed. "You good?" "Still waiting," I said. She smiled, turned around and walked away.
At about 1pm she came out and informed us that Gail's pre-op eval will be at noon on Wednesday. We would get a phone call on Thursday telling us when to be there on Friday for the operative endoscopy. She still had no idea about the "pep scan" but gave me a number to call. Then she told us we had to go to a nearby lab so Gail could get some blood drawn.
While Gail was getting her draw, I called the number for the "pep scan." A rather snotty-sounding young lady started taking my info, then she said, "Oh, I have you right here. I'll be calling you tomorrow to let you know when the scan will be." (See, my insurance needs to preauthorize whether or not Gail will be able to stay alive.)
It was 3pm, but we were finally on our way home. I was two pills behind on my levodopa/carbidopa and my blood sugar was through the floor. Gail was so flustered and harried her brain was shutting down.
We got home, both in an utter state of exhaustion.
Today, I waited until about 2:30 to call the snotty little number at x-ray.
"I told you yesterday that you need insurance pre-authorization," she said.
I said, "No, you told me yesterday that you'd call to let me know when the PET/CT scan would be."
I tried to explain that things are moving in a hurry, that they want to do this operative endoscopy on Friday and she cut me off, "I told you I would call you when I had the info," she said.
"Look," I said. "Don't get mad at ME! I'm just the patient's husband here. The doctor wanted all this done. Will I be hearing from you later today about this?"
"Today? Ummmm. No."
"Well, then," I said. "Is there anything we could do to get the insurance company to step up the authorization?" Despite my opinion about insurance companies in general, I think it unlikely they will turn down a PET/CT scan for someone whose life is depending on getting an accurate tumor staging.
"Ummm, no," she said.
"Fine. You have my number. Call me when you've got something, OK?" She said she would and we both hung up. A couple seconds later the phone rang. It was her.
"Did your wife have a biopsy or blood tests or anything?"
"Yessssss...." I said. "She had the biopsy on Jan. 31. We were told of the results on Feb. 7th."
"Do you know what doctor did it?"
I told her the doctor's name. I had to spell it for her. Twice. I told her that Gail had her blood drawn yesterday. She wanted the doctor's phone number. I told her that the UMD docs we saw yesterday TOLD us that the ENT doc had already sent them the info. But she wanted the phone number, so the phone number she got.
I swear to God, when Gail has her surgery I won't be surprised to see one of those things where you pull out a little piece of paper with a number on it, then have to watch a light board to see when your number pops up before you go back to the pre-op room.
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It's a long journey we're on, and we've just taken our first toddling steps.