No more Mr. Nice Guy

The Hawks played at Cole's last night. John and Paloma brought me Easter candy, a bona fide Philly pretzel stick with salt, and lots of dollar bills down my pants. We have the photographs to prove it. That's because I was bartending for a while, but I'm sure Paloma would've been shoving her hands in my jeans regardless (right, John?).

Ali, Allan, Celia, Kristen, Catherine, Andy, Chuck, Mike, Jay, Laurel, Amy, Lauren, Tim, Leslie, Ryan, Tony, Thelma, Gary, Randall, Paul, Rob, a few Friday night regulars, and some very cute newbies made for an interesting evening.

After a couple of potent shots and equally potent kisses, I was having a great time and well on my way to getting out of the past week's depression. Especially since Adam called earlier to let me know that the haggis had arrived from McKeans, and that we were all set for Friday night.

But I got very tired and left early, and the evening ended in a big, lame, "whatever." (Apparently, I can still get emotionally blind-sided by a "good" guy.)

When I got home I was back at square one.

Romaine called this morning, and we talked for a while. I realized that no matter how great my friends are and how much support they give me, they can't help me with my depression. I've basically given up on the "fake it 'til you make it" approach. Screw the brave, cheerful facade.

Allegra sent me a copy of "Kafka on the Shore" to cheer me up. It made me cry because it was a perfect gift and because the idea of anything cheering me up just seems so futile at this point.

A lot of patients go through the post-surgery and post-radiation depression and anger. Why should I be immune? Because I don't look sick? Up to now, I've done everything I've been told to do to be healthy, and I still have cancer.

Welcome to the club, there're plenty of us.

I'm just so tired of fighting, and for nothing. I don't want to feel this way anymore. I hope that by just surrendering to this riptide I'll eventually resurface. But "hope" is too strong a word, and I'm too weary to trust it anymore.

Nothing's gonna change my worldNothing's gonna change my world...

For the past few days I've been researching different chemotherapy drugs, radiation procedures, and comparing all their side-effects to prepare myself for this morning's meeting with the oncologist. I've been trying to get my mind in a place where I can go through things like possible hair-loss, hearing-loss, nausea, pneumonia, and anything else I discovered on the Internet. I even made a list of questions for the doctor based on message board postings and dubious online articles. And it was all for nothing.

I told Dr. S everything that's been happening and everything I'd been told since I boarded this crazy train. He examined my tongue, neck, and abdomen.

The good news is I won't be losing my hair, hearing, or going through radiation again. But I may lose my tongue.

Since radiation didn't work the first time, he doubts another six weeks of that or chemotherapy will make the cancer go away. He said that chemotherapy will make me sick, but it will not cure my cancer. At best, it will shrink the tumor or prevent the cancer from spreading.

He said that the cancer cells I have are "well differentiated" meaning that they are as close to normal cells as cancer cells can be. If they don't spread to other parts of my body, it won't kill me. I didn't ask, but based on my research I think if I don't do anything there will be tissue and bone loss when it spreads to my gums, jaw, face,... you get the idea.

I have a CT Scan scheduled first thing tomorrow morning. They're going to scan from my jaw all the way down to my abdomen.

He advised me to undergo surgery again. Since radiation didn't work, and he doesn't believe chemo will do much good, that's what my next step should be. I have an appointment with Dr. McNicoll's office next Wednesday morning. I guess it's Dr. Lueg's turn to take a crack at me. He would've performed my tongue reconstruction the first time if his schedule hadn't been so tight. I don't know what my chances are for a complete reconstruction, but I do know that they can't reconstruct taste buds. I'll never taste anything again.

I left the doctor's office and went grocery shopping.

When I got home, I sat down and let everything wash over me: the post-surgery and post-radiation depression I'd been fighting, the anger from the cancer coming back after everything I've been through, the looks I got from some family friends and relatives during Easter (as though an expiration date was stamped on my forehead), and the fear of not knowing how this is going to change my life AGAIN!!!

You could've heard me howling from as far away as Ventura.

I didn't eat dinner last night because there were people around, and the pain was just too much. So I had a very long, very slow lunch. Then I went to work on scraping paint and rust off my window panes while blasting David Bowie. Yesterday, Agnieszka gave me a copy of Young Americans. I've been playing the chorus of "Across the Universe" on a loop on my stereo and in my head ever since.

The other day, I gave some advice to one of the survivors on the ACS message boards who hadn't been able to eat for 11 months because of her tongue cancer. I told her to keep reminding herself that "there is more to you than what you've lost or what you miss."

It's time to take my own advice.

More side effects

I don't know if it's a coincidence or if I'm stressing myself out. This past week, a few side effects have popped-up. At first I thought I was fighting a cold because my throat has been phlegming up. But some of the survivors on the PlanetCancer message boards complained about the same thing after radiation.

My jaw is tightening up again, too, and I'm having problems swallowing. My saliva is tasting a little metallic (the way it was supposed to while I was still in radiation) and I'm producing a lot of it in my sleep. Is this normal???

Most nights I don't need codeine to fall asleep, and the meditation has been working well for pain management. Anger management, too come to think of it. Romaine from Kaiser's Social Services department still hasn't called me back. See, I only get love from Dr. McNicoll's office. What's up with that?

I stopped using the electric toothbrush this week. It was making my gums ache so much. I'll start using it again next week, I'm just not accustomed to using it. That thing is a jackhammer with bristles.

Must eat more

I've started recording what I'm actually eating. First off, I'm not eating nearly as much as I believed. No wonder I've lost another two pounds. I'm also not eating enough fruit, green and deep-yellow colored vegetables, and I should cool it with the baking. I have to focus a lot on my immune system since it's not unusual for chemo patients to get pneumonia.

Based on my reading, the tumor recurrence could be attributed to anything from genetics to the amount of chlorine and fluoride in my drinking water; death by tap water. I'm also not getting enough sleep, but not just any sleep. I should be in total darkness (literally) for up to 9 1/2 hours every night to get the proper amount of rest. The fact that I've been a recovering insomniac since I was 11-years-old tells me I'm on borrowed time.

I do feel like I'm running out of time. For what, I have no idea. That's a lie, I have some idea. But like Tom Waits wrote: "I'm standing at the station, but I can't get on the train."

Space Monkeys

Ali claims that five of the guys have pledged to shave their heads when my hair falls out. Marcus, who I actually just met at dinner tonight, pledged to do the same. Mazzy already shaves his head. Now I'm tempted to shave mine, regardless of what happens.

Project Mayhem has been scheduled for April in Las Vegas, but I'm not supposed to talk about it.

More Resources

I checked out the Head & Neck msg board on PlanetCancer.org, and it was more helpful. They're closer to my age, but mostly younger! Now I know that the ringing in my ears that just began two weeks ago is common after radiation therapy. I was afraid the cancer had spread to my ears!

I found a woman in Boston who went through what I did, plus a procedure called brachytherapy. They "implant mini-glass jars in the underside of the jaw and slide radiation seeds into them over the course of a few days, directly into the tongue." I remember the radiation specialists mentioning this procedure before I did the external radiation method. I remember that it freaked me out. It still does. The upside is I wouldn't lose any hair, but I would have to be hospitalized for a few days.

Another guy who went through 8 weeks of radiation and Cisplatin chemotherapy lost some feeling in the tips of his fingers temporarily. That happens to me on and off, too. Along with a tingling around my surgery arm, and neck twinges from surgery.

So I am feeling better now that I'm discovering better online resources. One of the best postings was to a McSweeney's list:

"Signs Your Doctor May Be Coming On To You" by Wendy Molyneux

Steps to battling depression

Get drunk at a trendy, expensive restaurant in an outfit I can't really afford but look GREAT in, while Eric "bitches" about what an expensive date I am as he orders more and more food and drink, then end the evening at my favorite bar dancing up a storm with Eric, Gary, and Ali until closing time, and I'm ready to go home to James, who would rather spend his spring break making sure I'm okay than doing anything else.

This second round of cancer is better because more people know, but it's also worse for the same reason. There are people I put on a brave face for, and those I can cry my eyes out with. Everyone wants to be there for me, and they say things like "let me know if you need anything." But since what I need changes from day to day, the anger and frustration makes me think unfair thoughts of some people. I think about them and want to yell, "I need you to make me forget that I'm sick! I hate you for not being here with me now!"

I hate what this cancer relapse is doing to me. The first time around I had ignorance on my side. But knowing about the pain, loss of taste, loss of hair, and other side effects to come has taken what little romantic ideas of "facing cancer with courage" left, and driven them right off that rickety bridge named denial. There was nothing courageous about the first time. I just didn't know what the hell I was in for.

All the research I'm doing to prepare myself for the coming weeks isn't going to change my day to day regimen much. I go back to juicing, less pilates, more meditation, and do everything I can to avoid stress. Unfortunately, that involves spending less time with certain people. I can't really give specifics, but maybe it is time that I quit enabling dysfunctional behavior for the sake of keeping the peace.

Hair

Leslie told me about a friend of hers who underwent chemo for ovarian cancer. When her hair grew back, it was thinner, and not as healthy as it used to be before treatment.

Leannah has a friend who underwent chemo for breast cancer. When her hair grew back, it was thick and curly. Before treatment it was thin and straight.

I'm getting used to the idea of shaving my head and looking like a Space Monkey for a while. But tattoos on my head and loud, annoying earrings are out of the question, so don't start with me, Eric.

Yesterday was rough. I'm spending more time in the stairwell meditating the pain away instead of at my desk. I was bartending at Cole's that evening, but left early. The crowd was becoming too annoying, and Ali broke out his cigar. It made me nauseous.

I also have to stop examining my tongue. It hurts all over, but when I start pressing on some areas, I freak myself out if it even hints at a possible tumor. I joined the Cancer Survivor's Network on the ACS website. Mistake. I just ended up depressed and scared after reading a few "survivor stories." I hope those websites help some people, because they sure as hell don't help me. I'll stick to the message boards on the Mouth Cancer Awareness Message Boards.

Give up drinking, smoking, AND this!!!

Oral sex link to mouth cancer

- IrishHealth.com, 2/26/2004

Places to go, doctors to meet

My appointment with Medical Oncology (where I'll hear all about the joys of chemotherapy) is scheduled for March 29th. My Radiation/Oncology appointment is still on April 8th.

My vocabulary now includes cisplatin, methotrexate, and "speculative."

Since Monday, I've been tossing my soon-to-be-gone hair as often as a high school cheerleader. Ali said that when the time comes, he's going to shave his head and convince some of the other guys to do the same.

Since I'll also be losing my sense of taste again, I'm hunting down new foods like Tony Bourdain. Adam has ordered some bona-fide Haggis, Eric is taking me to Meson G, and I have an insane recipe for chocolate brownies waiting in the wings.

Everyone has been so great. So far, it's been better this time around because more people know, and they've been so supportive. I was so stupid isolating myself the first time.

The illusion of control

I went back to the office today. The walk did me good since it was such a beautiful morning; beautiful day actually. The sky was so clear we could see all the way to the Hollywood sign from our office window. I even went to happy hour this evening and had some fried appetizers and a beer... with a Motrin. What the hell. I wasn't driving home.

I did a little online research on tumor recurrence: it means that microscopic cancer cells from the original tumor have grown. So I don't know if the radiation therapy was useless, zapped a bunch of other cancer cells, prevented metastasis (which is the spread of cancer cells to other parts of the body), or what. I'm still learning more about cancer than I ever wanted to.

I spent some time on the Mouth Cancer Foundation message board. It sucks that the only online support I have available is a UK site. Especially since everyone participating seems to be at least twenty years older than me. There was a woman who had the same carcinoma I had, and the doctors didn't even offer tongue reconstruction as an option! To her, the procedure I went through was a rumor from far away in America. So I'm still feeling fortunate on some level.

I have to admit that all the research I'm doing on different kinds of chemotherapy (so I'll be prepared to ask the doctors proper questions) is giving me the illusion of being in control. So I am feeling less stressed.

My tongue still hurts sometimes, but I'm limiting myself to three Motrin a day, and one codeine tablet before I go to sleep. Otherwise, I have to either find a quiet place to meditate if I'm at work, knit (yeah, I started knitting last weekend), or scrape old paint from my window sill. It's my latest home improvement project. I didn't think it would ever be a good thing that I'm easily distracted.

I told my friends today. They're being great, as usual.

Maybe there's something to those online personality tests

While I was waiting to hear from Dr. McNicoll yesterday, I did a couple of those personality tests:

The "What Nightmare Are You In" Test
"Chased by a Monster": I hope you have on good running shoes, because you are being chased. Some big problem or type of pressure is after you and you are pushing as hard as you can to avoid it. It's there, though, and you can't hide. For example, you might be going through a rough time money-wise. Just keep going until he gives up- he may look scary but he's overweight and out of shape.

The Fight Club Trivia and Purity Test
"Space Monkey":You're walking the line of Fight Club geekdom,.. you strive to hit rock bottom and fell an evil international corporation all with a shaved head. Remember, you are not a beautiful or unique snowflake.

I don't know about the hitting rock bottom, but the shaved head may be a hint of things to come.

Bad news, Part II

Dr. McNicoll is arranging for me to meet with a pathologist and a chemo guy. I think that's what he said. I'm still in shock, I guess. I should be hearing from them by the end of the week for my appointment.

Romaine, my contact at social services, called while I was driving to my parents' house. We're supposed to set things up tomorrow. I decided that maybe a professional should help me better deal with my anger.

I suppose I'll be meeting more doctors, re-discussing my case with radiation specialists, and asking Dr. McNicoll a lot of questions. I'm still not clear on what "recurrence of the tumor" actually means. But the lump was on the left side, where the original tumor appeared.

So many questions.

I just got home from telling my parents. It was terrible the first time, it was just as terrible the second time. They had questions I couldn't answer, and there was nothing I could do to comfort them... again.

My mother asked again if I want her to go with me when I meet with the chemo doctors (doctors, doctors everywhere and not a one to marry). Again, I had to explain to her that the state of mind I need to be in to get through this requires that I not go with my mommy. And again, she's pissed off about that.

When I was crying on Leannah's shoulder earlier, I thought of my dad. I hate discussing my cancer with him. For whatever reason, his questions make me feel defensive. I know he just wants to know what's going on and what I'm doing about it, but instead it feels like he's talking to the nine-year-old he wishes I still was. You could see it as him being protective, but it makes me feel as though he has no faith in my ability to take care of myself... maybe he has a point.

Bad news really does travel faster

Since I wasn't expecting the results from the biopsy until Wednesday, I knew that Dr. McNicoll's call early this morning wasn't good news.

The results showed a "recurrence of the tumor." He spoke to the chemotherapy doctor earlier, and I may have to undergo that procedure next. He's going to be at the Tumor Clinic this morning to discuss me with the radation doctors and the chemo doctor. We're going to talk again this afternoon.

This time, he suggested that I talk to someone at social services. I said, "Sure. That would be great." Auto-pilot is a wonderful thing sometimes.

I had just arrived at the office when he called. As soon as I hung up, I broke down, and Leannah was right there. I cried on her shoulder for a few minutes, then went home.

I haven't been able to reach my parents yet. I may wait until after I talk to Dr. McNicoll this afternoon, then drive over tonight. James asked if I wanted him to come over. I told him I wanted to be alone right now.

So, I'm at home drinking Vietnamese ice coffee, listening to Velvet Underground, and typing away. I'll probably embargo this entry until I talk to my family.

I guess this means dating season is over.

Eggs... it's what's for breakfast, lunch, dinner, AND dessert.

That's Chuck and Andrew in the pictures. They're my new neighbors; the same Andrew who went to Las Vegas with Ali and me back in August. I ended up going to the Beijing Modern Dance show the night before with Chuck. He should wear a shirt and sport coat more often; gives him a sort of young Andy Garcia vibe.

The ostrich egg omelets from Sunday's brunch were great! The shells are pretty thick, so they had to power-drill into them. Adam brought the eggs down from an ostrich farm near Santa Barbara. We could've fed a platoon with the one egg. Instead we had four omelets. It was heaven!

I've been buying 20 eggs at a time since they're my new oatmeal. I'm also experimenting with Thomas Keller's quiche recipe. It makes a quiche 9" round and 2" deep, so I spend the week eating it. Last night, I made one with button and crimini mushrooms, baby asparagus, sun-dried tomatoes, and lots of Havarti cheese. Yup, it's a heart attack waiting to happen.

I'm still in pain, less from the biopsy more from the "healing process." Dr. McNicoll didn't refill my codeine prescription after all. He told me to take Advil or Motrin. So far, Advil isn't really doing the job.

So, I'm also eating a lot of chocolate Easter eggs. Like real eggs, the chocolate eggs are soft, and not so painful to eat. Right now, a whole variety of them are 3 for 99 cents at the Rite Aid across from the office. I tried the Hershey's Milk Chocolate Marshmallow Egg (****), Reese's Peanut Butter Egg (**), and Cadbury's Caramel Filled Egg (made my head explode; couldn't finish it). They don't help with the pain, but they don't hurt, either.

Slice and Dice

I showed Dr. McNicoll the lumps I was worried about, and he said those were nothing. However, there was another lump closer to where some stitches hadn't dissolved. He said that sometimes, scar tissue accumulates and hardens in those areas. But knowing that I would just drive myself crazy if he didn't do anything, he took the precaution of performing a biopsy on it.

So while he was sticking the novacaine needle around my tongue, he commented that the nerve endings in the new area appeared to be working (based on my twitching). He sliced two samples, and of course showed them to me before tossing them into the lab cup, and told me the results would be in by next Wednesday. Otherwise, my mouth looked good.

All the aching and sharp pains, even in my ear, were normal. I'm just being a big baby (my words, not his). But he was surprised to hear that I'd regained my sense of taste completely. Usually, only part of it comes back.

Since the novacaine is starting to wear off, I'm going to take two codeine and try to eat some dinner. I skipped lunch today, and I'm starting to feel it.

He likes me. He really, really likes me.

Maria called yesterday. Dr. McNicoll wants to see me this afternoon at 2:30pm. Hopefully, he'll take a look underneath my tongue and tell me I'm overreacting. He did say way back when that when the nerve endings re-activate, some patients panic and think the cancer is back. I hope I'm just panicked.

I lost my cell phone yesterday. But I got a replacement this morning. So I've lost nearly everyone's phone number. Including guys I just met recently. But there were also a lot of numbers stored that I should've deleted LONG AGO. I'll take it as another sign that I should be living more in the present.

Right now, that means cooling my heels until 2:30.

Scared, Part III

Maria from Dr. McNicoll's office just called. Anthony told her how I was, and she asked me if I wanted to see Dr. McNicoll the same day I'm scheduled to see Radiation/Oncology. Very tempting. But I said no. After all, if the Radiation doctor says there are no new carcinomas under my tongue, that should be ok. I just need more codeine.

But I told Maria that I'd check in with her on Monday if I change my mind. She's so great.

Scared, Part II

Dr. McNicoll won't be back in the office until next Monday. But I have enough codiene to last me the weekend. So for the next three days I'll be wrestling my imagination more than anything.

I requested time off from work tomorrow and Monday. If I just keep busy with the indoor garden and painting, I should be okay. Plus I'm bartending tomorrow night, seeing the Beijing Modern Dance Company on Saturday, having brunch with the new neighbors Sunday, and dinner with Allegra that evening. She's flying in from NYC just to run the marathon.

Dance, dance, dance...

Scared

Yesterday, I made the mistake of looking at photos of tongue tumors on the Internet. There are two suspicious looking lumps underneath my tongue. I don't remember if they were always there, or what. I'm still in pain. I started taking codeine again.

I called Dr. McNicoll this morning and spoke to RN Anthony since he's in surgery all day today. I asked if it was possible that two tumors would suddenly surface so soon after radiation therapy ends. He said it's very unlikely, but took down an extensive message for me. I hope I'm overreacting. At the very least I scored a refill on my codeine prescription.

Eric got back from Chile this week. He came to the bar last night. Depending on what the doctors say about my tongue, we may go to Vietnam together next month. I didn't tell him about the suspicious lumps on my tongue, just that I may fly into Hanoi sooner than planned. The thing is, he wants to go to Ho Chi Minh City, which is in the south. I want to spend the first 4-5 days kayaking, swimming, and camping around Ha Long Bay, then chill around the historic section of Hanoi. I may even detour to Angkor Wat in Cambodia before flying home. But Eric really isn't interested in the north. I may end up going by myself after all.

I suppose I'll be losing more weight

Six months since surgery, 3 months since my last radiation treatment, and I'm in pain. I don't know whether it's because of the electric toothbrush, that I'm talking more often, or if it's the normal healing process. But for nearly two weeks my gums, jaw, and tongue, have been aching.

At first my gums just felt the way they do after flossing, except it was all the time. Then my tongue began aching because I've been forcing the right side from rubbing against my teeth. It feels like the entire muscle is fatigued. Now my jaws and neck are killing me. I took some asprin last night so I could sleep. But this afternoon, it was hurting so much I got a headache.

I want to believe that it's just the healing process; all the nerve endings are waking up finally. I won't know for sure until I talk to whichever radiation specialist examines me on the 11th.

Regardless of my big appetite being back, the pain is keeping me from eating again. I lost two more pounds last week. And just when I thought it was safe to buy some new clothes.