another appointment

So, Dr. Lueg, who I initially talked to after the Tumor Board, wants to talk to me again. He's actually the back-up surgeon and is in the same office as Dr. McNicoll. Now I'm getting nervous. Why would he want to talk to me a week after his colleague already did? My appointment is next Friday afternoon.

So I'm juicing up papayas, mangoes, and carrots. My skin is turning orange. I'm taking anti-oxidant supplements, but the Tylenol 3 is what's working like a dream. The tumor seems to be getting better on the topside of my tongue, but now it's swelling up on the bottom side. I may try cottage cheese if the swelling stays down.

Some of you have been telling me that God only gives you what you have the strength to bear. Does that mean if I were a weaker person, I wouldn't have cancer? I asked God about this the other night. He just rolled his eyes and said he'd call me after yoga class.

Surgery, Part II

Met with the surgeon, Dr. McNicoll, yesterday morning. Learned a lot more about my options and the condition of the tumor.

I may have some reconstructive surgery done because the tumor is (on a scale of 0-4) a large 2/small 3. Not just my tongue, but the floor of my mouth may be affected.

They would take a tissue transfer from my wrist, along with one of my arteries in the area, and transfer it to the area of my tongue that's going to be sliced-off. Because lymph nodes in the surrounding area will be taken out as a precaution, there will be a J-shaped scar running from the back of my left ear to the front of my neck. They will replace the tissue on my wrist with tissue from either the front of my thigh or my ass, which is purely a cosmetic decision.

So let me know if you think I should have a scar on the front of my thigh or my ass, because I couldn't care less.

The surgery will be on Tues. Aug 31st at the Kaiser hospital on Sunset Blvd. I'll be donating 2 pints of blood for the surgery as a precaution. My hospital stay will be between 5-6 days because of the reconstruction. Good news is I scored a prescription for Tylenol 3 and had a really good night's sleep last night.

Gee, how am I feeling?

The hardest part is when friends find out second-hand and I get their e-mails asking how I'm feeling. For whatever reason the reality of it all sinks in deeper then. And that's starting to happen a lot more now. I also feel a little guilty for not telling them sooner myself. So, apologies all around.

Sometimes it feels like I woke up one morning in someone else's body, in the middle of someone else's life.

But most of the time, it's business as usual. No major epiphanies or existential break-downs. I have bad moments only when I really think about what my life might be like after the surgery. But they're just moments. I keep reminding myself that if I had to get cancer, at least it was found early, and it will all be over soon.

I'm really looking forward to cooking and eating again.

Backstory

Now that a few more people are finding out what's going on, I've been getting questions on how I found out about the cancer. Well,...

In June, I went to the dentist to get fitted for a mouthguard because I thought that I was just chewing on my tongue in my sleep. Dr. Carol Lam (who is absolutely wonderful and has a great office in the Fine Arts Bldg. downtown) referred me to an oral surgeon because she was concerned with how the sore looked.

So I went to Dr. Elizabeth Ebner, who performed a biopsy and sent the tissue to the lab. If you ever need your tongue sliced, go to Dr. Ebner. She works fast and isn't stingy with the Novacaine (plus she prescribed this great cherry shake type thing that really kept the swelling down so I could sleep). A week later, the results came back, and I found out I had a squamous cell carcinoma. That was on July 2nd.

Since then it's been all about getting my appointments with Kaiser as quickly as possible. In this case, Eric V in Senator Boxer's San Francisco office has been an ANGEL setting 3-foot flames under the folks at Kaiser's radiation/oncology department, so I wasn't waiting all summer for my appointments.

And that pretty much brings all of us up to speed.

Surgery

I have a consult appointment with the surgeon, Dr. McNicoll, next Wednesday morning. This is a chance to bring up specifics on whether I or anyone else needs to donate blood before the surgery (type B+), and anything else I should do/expect. I'm going to confirm the short and long-term side effects of radiation treatment, and ask questions about Proton Therapy. The nearest facility is at Loma Linda University Medical Center (Ali mentioned that the original Int'l House of Pancakes is in that area, and that they serve an incredible apple crisp pancake thing).

Bad news is they're booked, and that the soonest I can get scheduled for surgery is Tues., August 31st. Dr. McNicoll is in surgery all day today, but his R.N., Maria, said she's trying to get me in sooner, keeping an eye out for cancellations. This also means I'll have to come in for another chest x-ray.

The tumor is developing a mind of its own. Sometimes the swelling is low, and I can get banana pudding or guacamole down. But then it just inflames for no good reason and I have to put the food away and down a margarita before I pass out from the pain.

A friend of mine mentioned a Spanish version of Cointreau, and I found it: Cuaranta y Tres. Mix 2 oz. Patron, 1 oz. Cuaranta y Tres, 1 oz. lime juice and ice in a cocktail shaker, strain into a chilled martini glass, drink. Repeat at least two more times.

2 Asians, an Armenian, 2 Irishmen, and an American walk into an examination room...

So they took turns pressing on the tumor (OUCH!!!), feeling-up my neck and jaw, stuck a camera up my nose and down my throat, and gave me two options:
 
1) Slice off the rest of the tumor on my tongue, which covers about a 4 cm diameter, and some of my lymph nodes in the same area (I had no idea we have around 30). Recovery from the surgery would only take a week, and I would be talking like Marlee Matlin for a good long time. That's 1/3 of my tongue out the window, and a scar on the left side of my neck. Full recovery, barring any further complications, would take about a year.
2) Radiation treatments every day for six weeks, recovery time would be 2 weeks. My mouth would be dry, with some burning discomfort, I would have to carry a bottle of water around with because I would have dry mouth forever, and I would have a diminished sense of taste for the rest of my life.
 
So, I chose to be the proverbial wolf that chewed off her foot and get the thing sliced off. There's no way I'm going to let anything diminish the taste of chocolate, coffee, or... hell, anything.
 
After the surgery, I'm considering learning sign language just to play with people's minds. If anyone asks about the scar, I'll tell them I got in a knife fight with my doctor.
 
I'll let you know when the surgery is scheduled.

CT Scan

Had my neck and head CT scan this afternoon. It took a little while because the iodine IV they hooked me up to began leaking during the procedure. The technician warned me that the iodine would burn a little once it was injected into my bloodstream. Actually, the warmth you feel in your chest after drinking really good brandy, imagine it everywhere... everywhere (and they expect you to lie still?). I should get iodine IV's more often.

Next up, my Tumor Board is on Friday morning.

first day back at the office

Can't really relax at home with all the stuff that needs to get done at work, so I went in this morning. If I don't talk too much, I should be able to last the entire day.

I didn't sleep at all Friday night because of the pain. I took some Excedrin, but it didn't help much. But I did discover that soda and yoga brings down the swelling. So add empty cans of Diet Pepsi to the trail.

Just counting the hours until Friday's Tumor Board. Hopefully, the CT scan will show that the cancer is limited to the carcinoma they found on my tongue (most of which was sliced off for the biopsy). After the stitches heal, the first thing I'm going to do is eat a hard-shell taco.

the latest fad diet

I have my CT Scan appointment set for Wed, Jul 14 at 3pm. The following Friday is my Tumor Board. A bunch of specialists, including an oncologist and a dentist, will be there to check out the bad real estate on my tongue.

So the last stitch from my initial biopsy still hasn't dissolved, and it's verrry annoying. What's left of the carcinoma is even worse. But if I don't talk, I can bear it. The good news is solid food is out, so I've lost five pounds. If you want to find me, follow the empty cans of Slim-Fast and bottles of Patron.

Have a great weekend, everyone.

L.