Kevin's Dead Cat

Kevin's dead cat

2005-10-19T12:37:00.000-07:00

From Philip K. Dick's novel, Valis, pg 26:

Our friend Kevin always began his attack one way. "What about my dead cat?" Kevin would ask. Several years ago, Kevin had been out walking his cat in the early evening. Kevin, the fool, had not put the cat on a leash, and the cat had dashed into the street and right into the front wheel of a passing car. When he picked up the remains of the cat it was still alive, breathing in bloody foam and staring at him in horror. Kevin liked to say, "On judgement day when I'm brought up before the great judge I'm going to say, 'Hold on a second,' and then I'm going to whip out my dead cat from inside my coat. 'How do you explain this? I'm going to ask." By then, Kevin would say, the cat would be as stiff as a frying pan; he would hold out the cat by its handle, its tail, and wait for a satisfactory answer.

Fat said, "No answer would satisfy you."

"No answer you could give," Kevin sneered. "Okay, so God saved your son's life; why didn't he have my cat run out into the street five seconds later? Three seconds later? Would that have been too much trouble? Of course, I suppose a cat doesn't matter.?

"You know, Kevin," I pointed out one time, "you could have put the cat on a leash."

Laura's resting place

2005-10-19T12:18:00.000-07:00

On September 21st, 2005, Laura was buried in Kaneohe, Hawaii at Hawaiian Memorial Park. I haven't had the strength to post this earlier, not that I really feel that I have it now, but I can't leave it undone. One of her last wishes was to be buried here, with her grandparents. The site is a place of natural beauty, and Laura felt a strong connection to it. The two photos here are of the view from her graveside. When it rains, the mountains are filled with waterfalls. If any of you visit, please let me know.

James

Laura Esguerra Adams (July 5, 1969 - September 3, 2005)

2005-09-05T13:00:00.000-07:00

On Saturday night at 10:35 pm, Laura, my darling wife, died in her sleep after a 14-month battle with cancer. She had come home from the hospital on Tuesday, after having made the choice not to have her gastric feeding tube reinstalled. Laura was able to say goodbye to some of her friends and family, and coming home gave her a few last moments of joy before she passed away, finally leaving behind the suffering she has had to endure for the previous months. I am sitting now, alone, in our loft, the hospital bed to my right, surrounded by medical equipment, the oxygen pumps now silent, and my heart aches for her presence, but I am grateful that she is no longer in pain and can finally find some peace.

Laura, I miss you and I love you. You are my family and I am yours.

James

Laura at home

2005-08-31T22:06:00.000-07:00

Laura has had a very difficult time in the last two weeks--she has had two hospital stays for a total of 11 out of 14 days hospitalized. The day she was to be released from the first, she suffered a pulmonary embolism that caused her to be even more weak and in pain when released later in the week. After the embolism, she had a procedure to insert an umbrella shaped filter to catch any additional blood clots from her legs before they reach her lungs. This, too, created extreme pain in her right leg. After the procedure, Laura was able to come home for two of the hardest days out of countless hard days we've ever faced. Every day my heart breaks and after endless days of crying, I think it can't break anymore, but when seeing her suffering like that it breaks all over again.

After those two days, Laura had a problem with her gastric feeding tube and I called the paramedics again. Laura was admitted to hospital, but she chose not to have the feeding tube reinstalled. She had made the decision that there would be no more pain and suffering. She was ready. Once again my heart breaks. The only thing I can imagine worse than losing Laura is seeing her continue to suffer. After a weekend of discussion and tears with family, friends, doctors and social workers, Laura held fast to her decision. She has come home to spend her remaining time with family and friends. Doctors say she will have anywhere from a few more hours to two weeks before she leaves us. We are doing everything we can to make her comfortable and let her know how much we love her. She is the strongest person I know, and I am proud of her for facing this with such courage.

To all her family and friends, including those friends she met here, through this blog, Laura sends her love.

James

Laura's hospital stay extended

2005-08-23T16:03:00.000-07:00

The doctors are having some trouble getting Laura's infection under control--her white blood cell count hasn't improved much with the current antibiotics, so they are planning to keep her at Kaiser West LA for a few more days. The good news is that it's not deep in her lungs--not pneumonia in other words. I'll update the blog whenever I can, but I'm spending most of my time at the hospital, so keep checking back even if things don't change too fast.
James

Laura's in the hospital

2005-08-19T11:06:00.000-07:00

On Wednesday night, Laura had a very bad coughing episode and was coughing blood through her tracheostomy. I called the paramedics and they took us to County Hospital (the closest) Emergency. The bleeding was gotten under control quickly--she most likely broke a blood vessel because she was coughing so hard. After about 5 hours in emergency she was transferred to Kaiser West LA, where they're keeping her under observation because she also has an infection in her lungs. There hasn't been any more bleeding, and she is taking IV antibiotics for the infection. She will be in the hospital until Sunday at least and perhaps longer. Normally she would be at Sunset, but West LA had the only available rooms on Wednesday night. Call me or the hospital for more information. Sorry I haven't had time to let you all know personally. Thanks everyone.

James

Blood drive for Laura

2005-08-17T16:29:00.000-07:00

Hi everyone,

Our amazing friend Ali has organized a blood drive to help Laura through any transfusions she may need because of her chemotherapy regimen. The drive will be August 26th at the home of another amazing friend, Adam. All the details are below in the announcement Ali put together.

Thanks to all of you for everything you've done,
James

Calling on all friends! Calling on all friends! I need your help....

Are you ready to party and have a great time....No, it's not another
divorce party (although I had great time at the last one). This one is
special...I am even throwing in your first pint of Spaten
Lager FREE....Yes...FREE BEER...

Of course, there's one tiny CATCH. I need your blood.

On Friday, August 26th I will be hosting a Blood Drive on behalf of my
friend, and beloved Cole's regular, Laura. She is currently undergoing
chemotherapy, and can use our extra pints. (To read more about Laura
and her current situation, please visit her blog at
www.kevinsdeadcat.blogspot.com.)

My friends from Kaiser will be drawing your blood at the penthouse of
my friend, Adam (home of the best views in LA). The Blood Drive will be
held from 11 a.m. - 7 p.m. on August 26th. I need 50 people to set this up, so email
me or call me to setup an appointment ASAP -- appointments can be at
the top of each hour to cut down your wait. The drive will start by
appointment at 11 a.m. and continue until all the people signed up are
done.....Call or Email (714-715-1685, amazarei@travelzonellc.com). The goal is 200 people.

All donors will receive a thank you gift bag which includes a Mega Millions
Lotto Ticket, and a gift certificate for a free pint of Spaten from
Cole's during the after-party.

That night, (August 26th) I'm hosting a party for all our friends and donors at
Cole's (you don't have to donate to come but you better). One of the best local bands
in town -- I See Hawks in LA -- will be playing in the back room. The
free beer will be flowing, and we'll all compare Band-Aids.

Help Laura, Get Free Beer, Listen to the Hawks....you can't do better
on a Friday. Call me and set the appointment. Ali

Blood Drive Location
Adam's Penthouse
533 South Los Angeles Street
Between 5th Street & 6th Street
7th floor

Laura Blog Address
www.kevinsdeadcat.blogspot.com.

Cole's P.E. Buffet
118 East 6th Street
Between Main Street & Los Angeles
213-622-4090
www.colesla.com

Ali
714-715-1685
amazarei@travelzonellc.com
amazarei@colespebuffet.com

Nevermind the C-Trials

2005-08-10T11:22:00.000-07:00

There are actually two trials going on, one at Kaiser and one at Cedars-Sinai. James got called back by from the clinical trials nurse at Kaiser , who said that the trial was for people with a different type of head and neck cancer, so I'm not eligible for that one. The contact at Cedars-Sinai told James that they may not be enrolling any more patients for that trial, but he's expecting a call back from them. Either way, I might not have been chosen for the test group, anyway. But I shouldn't despair because they could just let the chemo loose on me without risking leaving me w/out any treatment at all for a month. Dr. B. also called to say that we'll be discussing possible treatment courses at our next meeting. He's worried, though, that continuing or changing treatment might just end up making me sicker, without changing the cancer. For now we have to wait...

So I took a shower. Actually, James helped me take a shower... Heaven. I should worry less about clinical trials, and concentrate more on showers. I love my Cabana Boy.

Clinical Trials

2005-08-09T10:12:00.000-07:00

Took a chance looking through the ACS website over the weekend on clinical trials. Turns out, this trial in Los Angeles, CA is enrolling patients diagnosed with squamous cell carcinoma of the head and neck that have been previously treated. The objectives
of the trial are to compare ZD1839 (Iressa) at dosages of 250 mg and 500 mg versus methotrexate in terms of overall survival, symptom improvement, tumor response, safety and tolerability, and quality of life. James spoke to someone at Kaiser, where they're actually running the trials, and gave them my patient ID number to check out my eligibility. Great news. I suppose in at lease one of them them, I will be chosen for one of be non-placebo groups. Cross your fingers.

Still dreaming mad dreams about blueberries. Blueberry milkshakes now, w/two maraschino cherries on top. I only remember making them at home with either wild blueberry jam, or frozen whole blueberries. But, the BEST BERRY PANCAKES are at the Bellagio LV Cafe. They put blueberries, strawberries, raspberries, and whipped butter on each layer with the best maple syrup. For this dish, all you need is a tall glass of ice cold whole milk. Well, it's all I would need.

Going back to Neverland, now...

Weekend

2005-08-07T16:07:00.000-07:00

This weekend it's been all about just hanging out alone with James and living in the past. I've been mixing different juice coctails and pouring them down my feeding syringe as often as I can. Sometimes, I just lie around pouring ice water down the syringe. I'm addicted to the smell of crisp, ice-cold water. But I also lose myself in the memory of chocolate ice-cream sodas, Fudgesicles, and blueberry smoothies.

I remind myself that I'm bucking-up my body's morale, keeping with the mental/emotional instant gratification so my body can fight the side-effects of the chemo. But what I really need to know is if the chemo is working. But it's too early to know for sure. Dr. Milch says that all the necrotic tissue in my mouth could be a good sign that cancer cells are dying away. But Dr. Buchschaecher isn't so hopeful because the tumor is still there. (SIGH).

Hopefully, there will still be no news/sign of metastasis by the time we do see a change in the the tumor, and my buddy Morphine will keep on keeping on.

Blueberry Juice

2005-08-02T07:26:00.000-07:00

It's supposed to be the best antioxidants ever. And lucky me! James buys them in bottles for me; the really organic stuff that smells incredible. Any chance I can, I take as much as I can down my feeding syringe along with the Chinese herbs. Then there's the stretching before the neck gets stiffened and annoying, 8:00 am feeding.

James spent most of last week moving the rest of his stuff out of his old loft in Long Beach, and unpacking my books onto these great bookcases that are perfect in the garden. It made the heat bearable. I love this guy.

Popping in, For now

2005-07-30T15:55:00.000-07:00

The past four weeks have been a blur; eee-eye, eee-eye, ooo. This morning was the first time I woke-up with James out of the apartment; eee-eye, eee-eye, ooo. Still hating my life (clap, clap, clap). But hurting everyone would be worse (stomp, stomp, stomp).

So when I can no longer stand the mental torture and I can only palliative care, bring it on

Kiddie Food Way-Back Machine

2005-07-13T20:48:00.000-07:00

I'm very anxious because yesterday I had a bad time when I practiced drinking water the normal way. Today, my throat... it hasn't been misbehaving, but it's definitely today's squeaky wheel.

I've been distracting myself with fantasy meals and gourmet cooking shows, but that's not unusual. I tried encouraging people to eat total kid food, the stuff I used to eat before I ever knew what the word cancer was. There were wonderful things like Neapolitan ice cream sandwiches, Hostess Cupcakes, Blueberry Pop Tarts, bologna and cheese sandwiches on Wonder Bread, Welch's Grape Juice, Hawaiian Punch- oooooooh, I used to love Hawaiian Punch. Now I'm spending way too much time in the kiddie food way-back machine.

Anyway, there was a post a few months back on PlanetCancer.com where a woman hadn't eaten anything in over a year because of her treatments. It's going to be as long for me when my chemo is over. Hopefully.

Since I've begun massaging my neck the past few days, mostly out of fear because it felt like the swelling was getting closer to my trache. The shape of my neck, jaw, and cheeks have been changing. It's probably just a re-distribution of fluid.

Karma Scrub

2005-07-13T12:02:00.000-07:00

To make-up for the Wonka Cake request, here's one of my healthy breakfast alternatives:

1 c. blueberry juice
1 slice whole wheat toast with mascarpone cheese spread and either organic apricot or wild blueberry jam
hot tea

Which is a really tasty breakfast as well. But I mostly remember putting the apricot jam on my pinhead oatmeal with buttermilk. I was eating pretty well until the whole thing caved in on my head.

Wonka Cakes

2005-07-12T18:41:00.000-07:00

I've finally found something to absolutely covet: Wonka Cakes. And it's so irrational. It's just the same Hostess Cup Cake that I used to eat bags of when I was a kid. But it's chocolate, the icing and filling is purple, and it looks like so much fun!!!

If anyone's up for it, I think everyone should think of me while eating a pack of Wonka Cakes and a drinnking a tall glass of milk.

Tour de France

2005-07-12T11:21:00.000-07:00

So Lance Armstrong is spanking more poor cyclists in the French countryside who are still burdened with their testicles. What a bully. Why hasn't he single-handedly cured cancer with all the stuff going on in his foundation yet? But seriously, I hope he's having a good time.

There was a two-hour Tour de France special on the Discovery Channel a while back that featured all the wineries, restaurants, and castles along the route; you know, stuff that mere mortals would actually go to. Definitely what I'd rather be doing. Immediately I think of all the handcrafted chocolate shoppes and patisseries in the small villages. I'd also stick to brasseries and cafes 'cause I'm so poor. Then, there's all that cheese and wine. Sun, fresh fruit, herbs, outdoor tables with wine, cheese, bread, pate, and marinated olives. Aaaaaaaaah!

Magic Moments

2005-07-11T13:35:00.000-07:00

I slept through most of last night. I had to bug James for a morphine shot at around 2am, otherwise, I was down for the count until 7am. I think it's the closest I've come to a normal night since day the trache tube was installed. Oh my, could I be feeling better?

I'm not sure exactly how I'm feeling better; whether my coping skills have gotten better, my body is reacting positively to the chemo, the Chinese herbs are doing their job, the mind-bending drugs are completely flushed out of me, or what. I'm almost afraid to say it out loud: 99% of what I'm feeling isn't despair and denial. But something has definitely happened. I'm sure James is grateful that he won't be waking up at 3am with my inner cannula lying next to my bed instead of in my trache are over. I'm grateful that James has a real shot at sleeping through the night now.

Then again, last night's Iron Chef America was Freakin' Incredible!!! Two of my favorite cookbook chefs had a pizza dough battle. For months after I got Todd English's Olives, I only made pizza dough his way. It was perfect dough: thin almost cracker-like but chewy and light. I only made this dough when I ate pizza alone, or with only one other person because it was very tricky to handle.

Mario Batali's Babbo is just a gem. I call it Italian soul food because he has stuff like tripe, roasted beets, sardines, and stuff no one else I know wants when they come over for dinner. But it's definitely the stuff that I adore.

I still fantasize about my dream dinner if the miracle happens. And in every incarnation, there's sure to be a recipe from either Olives or Babbo.

Other details

2005-07-10T15:26:00.000-07:00

The blood tests before Chemo showed some mild anemia. So now I'm on Procrit. Nurse Marilou was very excited about it. She asssured us that it would really help with my energy level. I get an injection once a week.

I've been sleeping comfortably on my right side for the past few days now. It feels so great. But I'm still not sleeping through the night. James says I've gotten up a couple of nights still dreaming. That's the new goal, sleep through the night without waking up.

I missed Ali's very special party at Cole's this past Friday. I think I got a little too eager, and ended up wearing myself out. But Ali came by the next day and filled me in. Sorry I couldn't make it, everyone.

Chemo, part III

2005-07-06T18:35:00.000-07:00

Even though we got a late start because there were fewer staff this morning, the IV bags flowed like the Nile and we were able to get out of the Chemo Clinic at a decent hour. Maybe time flew because my body has become faster at absorbing stuff because of the feeding tubes. Dr. B is still pleased that I haven't had any nausea. I'll probably get my next CT Scan after the next Chemo Cycle and we'll see if there's been any shrinkage of the tumor.

New activities: practice drinking water in the normal way, artificially clearing my throat in the most efficient and pain-free way, and being happily back on the Chinese herbs in a big way. I also got a new pair of glasses, so I won't have to worry so much about my eyes. I was also able to meditate for a good 15 minutes. My sister came over in the afternoon to keep me company, and my cousin in the Bay Area sent me a beautiful bouquet that reminds me of Van Gogh in the South of France.

Today was a good day.

The Game

2005-07-03T12:15:00.000-07:00

So let's talk about medication. Never liked it; always tried to avoid it; can't really now; but dammit I am so grateful to just be taking a sleeping pill so I can simply sleep!

I have a new theme song. It stops me from howling uncontrollably while I wait for the morphine to drop my pain level from 7 to 2. It's "The Game" by Queen. There's just something about the guitar solo; simple, slow, classic. But don't panic. I just got it this morning. Maybe I'll wake up with a new one in my head tomorrow morning.

I need a good book, too. I've been watching too much TV. But for some reason, I'm hooked on "Felicity" on the WE Channel. It's the season where she's got short hair and she's dating Ben (finally!). And no, I haven't gotten around to watching an episode of "McLoed's Daughters." I hear it's a not bad series, but I don't know.

Anything on the Sci-Fi Channel... not so much. Which is a very good thing. Can you imagine the hell of being awake at 3am every morning hallucinating anything having to do with my cancer from "Star Gate: Atlantis", "Star Trek:TNG", or "The X-Files"?!!! Hell, I was up all night once after making the mistake of watching this very cheesy 90s miniseries called "Bella Mafia", and it was not a fun night.

OK, so here's your new post Agnieszka

2005-07-02T14:42:00.000-07:00

I haven't been posting most of June because the drugs they've been giving me after the stomach tube made me disoriented, and worse. I can tell when I type because the spatial orientation of each letter is different as I'm typing them down on white. But I've been weening myself off the drugs, which is a damn good thing. They made me disoriented, delusional, paranoid.

Right now, I'm climbing out of a deep blue funk. The stomach tube is great because I'm finally getting strength back. But the throat trache is still a pain in the ass.

My next chemo session is next Wednesday. I really need something drastic to happen after this next session. I haven't been getting sick (nausea, vomiting) but I really need this tumor to shrink, or do something. I'm so angry most of the time. Nothing really bad is happening, but I want some sort of sign, any difference in my condition that will tell me that the drugs are making some sort of difference.

I want shrinkage of the tumor, to be able to get rid of the throat trache and stomach tube, and have a Teriyake Burger at Islands with a large Diet Coke.

Feeding tube, again

2005-06-27T14:08:00.000-07:00

Laura's gastric feeding tube was installed this morning. The procedure went smoothly. She's home already and resting, tired and a bit uncomfortable, but recovering. The discomfort should go away over a few days and with any luck she won't be so tired, now that she can eat more. She's able to use the tube right away and will be having regular liquid meals and all her medication. Thanks everyone for all your comments.

Next Monday

2005-06-23T13:20:00.000-07:00

Laura's scheduled for Monday to have a more permanent feeding tube installed. It will go directly to her stomach and should actually be more comfortable than the temporary one she has now. The surgery is very quick and she should be able to come home the same day--no hospital stay, which is a relief.

More tubes

2005-06-22T20:12:00.000-07:00

Laura had a temporary feeding tube installed today through her nasal passage. It went really smoothly and so far she's having no problems with it. Marilu, Laura's nurse did it right here in our home. We're going to see how Laura feels after a few days of using this tube, then she'll be able to decide if she wants a more permanent version that taps directly into her stomach. I'm really hopeful that this will help increase her strength and make things easier on her, since she won't have to swallow all those pills.

The plan tomorrow

2005-06-21T23:05:00.000-07:00

hopefully I'll be getting a feeding tube installed tomorrow; the type that goes straight into my stomach rather than up my nose and down my throat. I'm tired of being too weak and my jaw and throat feeling too out of it to cooperate.

My dearest, darling James will have to be front and center for the specifics. That's all for now.

In my own way, I'm still trying to hold on. I promise.

Clowny's Hallucinations

2005-06-21T15:35:00.000-07:00

James could start his own blog on every monkey wrench he has to stick in whatever diabolical plan I have up my sleeve. This morning I was supposed to make some nonsense happen downstairs, and James kept telling me to relax and go back to sleep.

Life has gotten a lot less stressful since James has taken over my drug dosage and distribution levels. He's taking care of laundry right now, leaving me in the care this afternoon of Celia and Adam, who's chilling in front of "The Dreamers" right now.

There's been a lot of comments and encouragements out there the past few days. Thank you so much. But I'm missing the something inside that used to lift up my spirits after hearing those messages.

I spent the afternoon watching rather than writing and contemplating the situation. "Tony Bourdain", "Ming Tsai", anyone who can usually get me cheery and in the mood has me wondering if alcohol, fried pig skin, and a fresh grilled eel salad would be anything delightening my distant world anytime soon.

Everything tastes like the chocolate/mocha basement of a cancer patient's lazy mouth. Should I believe that after 2 chemos there may yet still be a moment when I someday order carnitas in a red mole platter, that "I am Lazarus come from the dead." Someday.

Is it bad to hope for the day when the pain in your mouth will subside long enough for that window of opporunity when you can swallow 80 mg of morphine as quickly as you can just for the glimmer of real, un-pureed, non-dairy, fine wine included, teeth-gnashing, heaven... followed by the warm nestle of Anthony Bourdain's arms slowly tucking me into 800-count Egyptian cloth sheets before one last espresso truffle dusted in Valhrona powder slides me into... oblivion.

Adapt or Die

2005-06-17T18:08:00.000-07:00

My Sister came by Wednesday afternoon before James came home. She just brought over her laptop and we hung out in front of home improvement and cooking shows all afternoon. Adam hung out after work and filled us in on the new plans everyone had for the neighborhood. It all sounded very exciting. I started to perk up a little, and looking forward to the potential street-fest/car crash which would surround my home. Just having Adam and Celia around talking about the future helped immensely.

I drank and ate a lot more than usual which is good. I spent some time on the nebulizer, and kept a stiff upper lip until James and I were alone again. I asked my sister to stay as long as she could because I didn't know what to do. So of course I started taking care of my plants. Thanks to the incompetence at Home Depot's registry service, more plants are still arriving weeks after the blessed event. Some even include the recipient's name! We've even had to check with some friends whose gifts were announced, but never sent.

But once I show James my posting, we start talking about what we have to do to keep me going. That includes the possibility of the stomach tube being installed if I don't maintain my weight for the next 4 days. So he's monitoring my meds along with Dr. Milch, noting my mood and behavior with every change in dosage. I have to say, it's taken a lot of pressure of me. I was so afraid of loosening my grip, even Derrick hinted that I might try and ease up on myself a little bit. So that's a new chore that's been delegated to James. But he deserves better. I only hope it personalizes his art a little.

I can't believe it's Friday already. Days pass, weeks pass, but my weaknesses aren't passing. I've been bypassing the frozen fruit yogurt and eating double chocolate ice cream with 10mg morphine and lorazopam sprinkles.

Taking it Outside

2005-06-16T20:05:00.000-07:00

The Genie is out of the bottle: Laura thinks of "offing" herself. My hospice team called to update me on the latest changes to my paliattive care. That's what I need to cheer me up: timing and dosage decisions with narcotics.

If ever there was a worst morning...

2005-06-15T12:21:00.000-07:00

I don't know if it was forgetting to take the 30mg morphine pills this morning, being out and about a week after chemo, or just being disoriented from lack of rest, but I nearly didn't, couldn't recognize myself in the mirror or in my own mind today.

I had to get new contact lenses re-filled, so it was an a.m. trip to Kaiser with James. I know I kept him up some last night with my trache, but I swear I tried to stay as still as possible. Having to look at myself in the mirror practically all morning to get the lenses and stuff was unnerving. As tiny as I was at the wedding, I felt that this is how I would look days past embalming. And since my tongue has swollen vertically, there's an unnatural elongation to my jaw as well.

I know this entry is going to be every variety of morbid. But I can't help how all this is making me feel. I'm also afraid that it's time to have that feeding tube installed as well. Swallowing solid food isn't getting any easier. Ingesting the multi-vitamin and herbal remedy pills have become its own meditation exercise. But between the phlegm from the trache and my tongue just not cooperating, it may be time to stick that tube right in my stomach... and I believe we all know what comes after that.

James is doing some much needed laundry, and I'm all alone in the apartment. I should call someone over. I shouldn't be alone right now. Considering how much money we just plopped down for eyecare this morning, I really have no business thinking what I'm thinking. God knows there's enough morphine lying around to do the trick in a matter of minutes. But it would be so rude to have James find me that way after the morning I put him through.

I love him so much. The only thing that would kill me more would be the certainty that we were cursed with an afterlife, and that I would have to endure what my suicide would do to him (remember, I'm still pissed off at Mark for offing himself 15 years ago). Then again, James has always been a more forgiving person than me. Besides, I didn't marry James so he could help me die.

This entire entry doesn't even feel like me. I've never talked about my own suicide before. Ever since I saw it, I've always hoped the afterlife would resemble that Robin Williams movie, "What Dreams May Come" where the wife poisons herself after her kids and husband die in separate car accidents. Then you could be whoever you wanted to be, doing whatever you wanted to do, in whatever world your mind could create.

I would love to start over like that. Leave all the pain behind, and just surround myself with beauty, and memories of the people I love. I may even hang out with Mark and Flagg. But somehow, I know the afterlife is going to be nothing like that for a suicide.

In a way, there is a kind of benchmark feel to the day. Beyond this point, you are no longer living for yourself alone... act accordingly. But to be brave, really brave enough to face the downward spiral with grace? That can't be for anyone but the one who matters most in your heart. I guess suicide isn't so much about letting someone else off the hook, as much as hoping they'll allow you this one last, selfish act.

But they never do. Besides, what's to be said about a lesser writer who kills herself the same year that H.S. Thompson does?

Soup and Sympathy

2005-06-13T22:34:00.000-07:00

After James left, Celia dropped by. Nurse Marilou also checked up on me, and (regal trumpet flourish) Adam came by around lunchtime. While Agnieszka went over security procedures with the new laptop, Adam and Celia went to the Penthouse to score some food for me.

It also gave Agnieszka and I a chance to talk over how borderline depressed I'd been feeling because I'm not eating as much. She's so great for that. When Adam and Celia came back, he brought some red roasted bell pepper and basil soup that was sooo fantastic. It was a little acidic, but the peach flavored Kefir took care of that little discomfort. So I ended up eating so much this afternoon that I felt nauseous, which believe me is good news. Once again, Adam comes between me and disaster. Then we chilled over FoodTV, which also lifted my spirits, and I took a much needed nap.

Chuck e-mailed me from Endland today. He and Giorgia sound so happy now that they're living in the same city again. They're supposed to take a road trip soon to Paris and hookup with Andy and Cat. I miss those guys sooooo much.

James came home with a new plant that has little yellow and pink orchids. He's so wonderful.

Today was a pretty good day.

Practicing Hopefulness

2005-06-13T09:24:00.000-07:00

James has to spend the day in studio, so Celia and Adam will be hanging out for a while. Agnieszka is supposed to drop off my office laptop this afternoon so I can get some tele-commuting done.

I need to develop habits for my nutrition, creative time, social time, and such. Up until now, I've been neglecting everything but food and rest. I forgot how big of an effect morale as on everything else I do. I even scheduled a cellist from the hospice to come in and play for me next week.

It's like I'm back to square one.

La La Land

2005-06-12T19:24:00.000-07:00

Homemade chocolate-chocolate ice cream, the color orange, gardening and interior design shows, my indoor garden, and Ming Tsai.

I probably have over 4 of his cooking shows Tivo'd. The best part is no matter what he makes, he brings in a friend to help him eat it all with at least three kinds of beer or wine. I love this guy.

Today's ep had a master brioche recipe that he wrapped around salmon and caramelized onions. Then he made sticky buns, two other brioche-type recipe's, then he and a baker friend polished them all off during the last minutes with beer and wine. It's like, "you have wine for breakfast? cool!"

Then there's the lovely Tony Bourdain. But all his eps I've seen at least twice already. There's also Bobby Flay, Rachel Ray, Mario Batali, and others who continue to help me hold on until the day when I can cook for myself and for my friends again.

I miss throwing pizza parties, and it's been so long since I've rotisseried a leg of lamb or a rib roast. I love my friends so much. I imagine entire banquets I can create for them. I imagine the wines I would pair with each dish. I imagine laughing my ass off because I always do when I'm with friends. I haven't laughed that way since the wedding.

I think that from now on, I won't throw parties. James and I will just get married again. Wouldn't that be nice? So eventually, if you haven't been to one of our weddings, you're just not trying hard enough.

Just Like Starting Over

2005-06-12T07:34:00.000-07:00

The 2nd cycle of Chemo has begun. After the transfusions on Wednesday, I took Xeloda and Anazet pills for four days. That ended this morning. The past few days have been rough because of all the phglem and fatigue. Plus, experimenting with morphine and anti-anxiety drug dosage has been no picnic.

I made double chocolate ice cream last night. What I could taste of it came out verry well. I'm still losing tissue, and nothing tastes the same. So along with the juices I've been drinking to be healthy, the bad stuff, like the ice cream, is helping maintain my weight. There's also an appetite booster that's helping me eat more.

There's no such thing as normalcy anymore, which sucks for a creature of habit. They keep saying chemo treatments are the worse because of the fatigue and nausea. I'm always nodding off in front of the computer and the TV. So I'd better lie down for a few minutes.

Victim of marketing or stress?

2005-06-08T20:48:00.000-07:00

Maybe I should've skipped yesterday's 2nd nap, or done more to avoid the "Mr. and Mrs. Smith" media blitz. But last night, I only managed three hours of restful sleep. I just couldn't get the problems with the movie's film plot out of my head. I hung out in the garden for a while instead of trying to get back to sleep. James thought I was sleep-walking again because I was trying (and failing) to light an oil lamp with an empty lighter. I really should be more considerate, because James still can't really sleep if I'm puttering around. Hopefully, it'll be much better once the 2nd floor is built.

We scored another private room, but morning television in L.A. sucks. I brought my Conde Naste in Vietnam issue, but continued to be distracted by whether or not this treatment was actually going to help me. (Danger! Pity party approaching) I doubt if the first treatment helped me at all sometimes. I definitely need to meditate more. Which means I need to sleep more. Which means I need to be less distracted. Which means I need to meditate more. And soon, and so on...

And I miss coffee. I miss biting into a fresh baguette dipped into strong and steaming Vietnamese coffee at midnight. I miss Peet's Ethiopian Fancy with an Almond Croissant. I miss Oaxacan blend with Huevos Rancheros, heavy with red mole and quezo fresco. I even miss fucking Gavina with a Sausage, Biscuit, and Cheese McMuffin with a greasy hash brown... oh, the humanity! These are the thoughts that can potentially send me straight towards the nearest center divider. Good thing I don't drive anymore.

But the hope of experiencing all those things again someday, they also keep me away from the center divider.

30-day Wedding Anniversary

2005-06-07T22:11:00.000-07:00

Under normal circumstances, I would have taken the afternoon off from work to prepare dinner:

Seafood Paella (shrimp, scallops, clams, cod, salmon)
Panne Rustica (from La Brea Bakery)
Whitehaven, Souvignon Blanc, 2004 (Marlborough)
Creme Broulee w/diced fresh mango

But instead, he had Thai roasted chicken and I had pureed beef stew. Which as fine, too. Maybe next year.

Ali and Big Eric stopped by for a visit this afternoon. I'm so glad they did. I thought that meeting friends at Cole's would better, but now that we have a sofa, it's much more comfortable hanging out in the indoor garden.

Today was a pretty good day. I two naps, washed my hair, and ate some. Tomorrow is my 2nd chemo session. Ali said he might show up, but has an early busines meeting in the Inland Empire. Oh well, it was great seeing him again today, either way.

Blurred vision

2005-06-06T12:46:00.000-07:00

The medication I'm taking for mild nausea, increased secretions and gurgling is blurring my vision. So expect more typos, maybe.

There was a big family buffet party Saturday afternoon. My Auntie Nanding and Uncle Meding celebrated their 50th Anniversary. There wasn't a whole bunch I could get beyond soup and pudding; so depressing. But I have some pureed lamb kabob right now and a whole variety of fresh fruit smoothies. The right side of my tonue has swollen up a little. I don't know what kind of anti-inflammatories I can take at this point because I just want to get this stew down. I'm also alternating the nebulizer and the oxygen tank in because there's something up with my airways, too.

I'm so exhausted. Two days before my next chemo and I'm scared that something in my blood tests will prevent me from taking it. I can't go out anymore, it takes too much out of me. At least not for a while. All I should be doing is sleepng and eating. But emotional and physical fatigue are taking over each day.

James needs a break, too. If I can just rest through the night without any drama, and do the same during the day, we should be fine. It's worse when I hallucinate because that's when I get childish, and start playing hide-and-go-seek with my inner cannula.

Reorganizing my space

2005-06-02T19:07:00.000-07:00

James and I moved the red mattress into the vault to make way for the green sofa. We also chatted about wall and window solutions now that the weather is changing. Ever since my throat has become less congested I've had more interest in planning the future.

I'm also hoping that my energy level will get back soon. I'm ordering some Tai Chi DVDs and drinking more green tea. Someday soon, I'll be able to walk the entire seven blocks in to the office. (Please, please make this happen!)

I'm going to see the next few weeks the same way I saw my initial recovery. This is just a recovery portion, and after doing everything correctly exercise and nutrition-wise, I will get back to my normal routine, but with an extra hole in my throat.

Subconsiously, my body is yearning for normalcy. James said that for two hours last night, I slept next to him on our bed without any difficulty breathing. But then I went back to lying upright on the other bed before the sun came up.

Hallunications and Caring for my Trache Tube

2005-06-01T15:33:00.000-07:00

At around 3am last night I woke up for no good reason, but it felt like I woke up in the middle of something. I just sat up looking around the apartment looking for objects and people. James woke up and asked if I was okay. I said something like, "Where did everybody go?" A complete 180 from the night I asked him if we should start kicking people out (again, there was no one in the apartment but us).

Let's back up a little. Yesterday, I told Nurse Marilou that I've been waking up in the middle of the night with no major discomfort. Just waking up. She suggested I start taking something for mild anxiety, which I already have in my magic bag. I've also been instructd to take the time-release morphine pills three times a day from now on instead of two. And who know what the new Chinese herbs are doing to me.

So back to last night, not a creature was stirring, but James noticed that the inner cannula of my Trache Tube was gone. I walked to the bathroom to check if at some point of the evening I cleaned it out, but forgot to re-insert it. Eventually, we found it sitting on the table next to my bed, uncleaned, and wrapped in tissues. I don't remember ever taking it out.

So as I cleaned out the cannula, James and I tried to figure out when I could've taken it out of my throat without him noticing. I faintly recall a bunch of supernatural creatures were trying to build some magic idol that would ease my pain for the rest of the treatments, but I don't remember giving my contribution.

My Mr. Spock Teddy Bear, Joaquin the Lamb, and Duckie just sat quietly and looked innocent. But I have a feeling they know something.

I didn't tell Dr. McNicoll about it this morning at our follow-up. But he was very pleased with how well I've been caring for the tracheostomy gear. He gave me a more light weight set-up. He also commented that I'm doing a great job keeping my tongue and mouth clean since more dead tissue has been detaching from the tumor. My tongue is actually looking the healthiest it has in a long while.

Nostalgia and Amnesia

2005-05-31T08:09:00.000-07:00

My parents and brother came by yesterday afternoon, and it was a really nice visit. We showed off our new sofa and my mom took some cuttings from my garden. There were also a couple of wedding photos that Lynn brought to the hospital that they hadn't seen before. But then I had to stop talking after a while and the visit got cut short again. But this time, I didn't feel exhausted when the visitors left. It sounds like such a little thing, but it's so encouraging.

During the three-day weekend, the tv has been on cooking and home-improvement shows almost constantly. I really miss cooking. On holiday weekends when James and I were dating, I would develop a weekend menu for us. We would spend Friday afternoon getting groceries, DVDs, and maybe even cruise by Giuliano's for fresh panne rustica, wine, or dessert; then we would be John & Yoko all weekend. We talked a little about how much we really miss those times. But there were still some good things about how we are now.

Last night was so purgatory. I don't allow myself too much time reminescing, yet when the current situation gets better, I'm afraid to hope for too much. I woke up in the middle of the night, as usual, but was completely disoriented because I didn't need to clear my T-tube, take a morphine, or even go to the bathroom. My neck was stiff, but otherwise it could've been any other night before the last surgery. I didn't know what to do with myself. I honestly had no idea what day it was, how I got there or why I wasn't feeling like crap.

James woke up, and we talked for a little while. I was able to get my bearings back after a few seconds. He's happy that I've been feeling better the past couple of days. I'm still so guarded during the daytime, that we only really talk at night.

Tomorrow is my follow-up appointment with Dr. McNicoll. Danny, James' friend in New York, wants to fly us over for a consult at Memorial Sloane-Kettering. There's a promising drug that just completed clinical trials on humans that may be available at MSK.

I can't allow myself to get too excited or hopeful, but it won't stop me from doing what I can to get completely well, or as well as I can be.

Mood Rollercoaster

2005-05-29T14:16:00.000-07:00

Stabilizing my physical health is starting to do a number on my mental health. The trache tube cleaning, forcing myself to eat whatever I can through a food processor to save on time and pain, morning and afternoon naps between meals, and a bunch of hourly adjustments that keep popping up.

Since Dr. Milch subscribed something to increase my appetite, the amount of food I've been eating has increased. But adjusting to eating with the T-Tube is a pain in the ass. It takes me almost an hour to eat a cup of soup. I tried eating a spinach omelet this morning, but since I had to move my tongue more it started hurting. So I want back to the blueberry protein shake.

Yesterday afternoon was great, though. All I need is food and rest, and I got plenty of both all day. I began feeling like I would get past this in a matter of weeks. That after the next chemo session, I would continue to feel better, the tumor would shrink, and I wouldn't need the nebulizer again. I very rarely need the oxygen compressor as it is. When the physical maintenance boosts my mood, I tell James things like, "Sorry, but you may have to deal with me longer than expected." He just holds me and says, "Okay."

But the slightest thing can plunge me into depression. If a hyper-active visitor leaves me too exhausted to visit Cole's, or I feel like my body is taking way too long to recover from surgery, or if I have to repeat myself on the phone again and again, I start to feel sorry for myself in the worst way.

I don't even think about how much harder it was after the first surgery. This is all happening now, and my will is running low. All the things I have to do just to keep my head above water is wearing me down. When I'm low James asks me what he can do to help, and there's nothing that he doesn't do already. Little things, like holding me when I'm on the nebulizer help immensely, and he thought of that all on his own.

I try to remember things I'm looking forward to: ballet tickets in June; "Anything Goes", and Vegas trip in July; Chuck, Andy and Catherine back from Europe in August; and hopefully a new 2nd floor by September. But the thing I'm looking forward to the most is growing old with James. But sometimes it's hard to remember that when you're holding the 5th of 8 pills you need to swallow.

Running out of electrical outlets

2005-05-27T10:46:00.000-07:00

James thinks that we might've both caught a cold from someone at the bar Wednesday night. He's been mildly congested since yesterday morning, and I've been a phlegm machine. We were both worried because I started coughing up a little blood yesterday and last night.

Enter: The Nebulizer. It's this little machine that turns medication into vapor so I can inhale it in. It's like an electronic hookah. Dr. Milch (via Marylou) wants me to use it with two types of medicine that they already gave me, all day, at 4 hour intervals. Since there's no pain or fever, and just a little blood, he thinks it's just irritation from coughing.

Leannah, Agnieszka, and Sol stopped by yesterday afternoon for a visit. It was the first time Leannah has seen my apartment. James showed them some of the wedding pictures that Glenn sent over, as well as some shots from the bar that Craig and my cousin Angel took. But even though James did most of the talking, I did enough to tire myself out, and we had to cut the visit short.

The sofa was delivered last night. It's sooooo comfortable. I'm glad James and I decided to buy it. It's our first major purchase from our joint bank account. I'm still concerned about our different taste in basically everything under the sun. At least when we do agree on furnishings, it turns out better than alright.

I hung out at Cole's yesterday afternoon with Ali and Allan for a little while. I needed some quality time with the boys, James could tell. Around dinner time, James called to see how I was doing. For whatever reason, I was a little short of breath on the way to the bar. James thinks it's because it was so windy at street level, so he came down and walked me back home. How great is my husband? So I cooked up some penne and fresh pesto for his dinner. My basil plant has been growing so big, it was time to do something about it. I only wish the pine nuts were fresher.

I have so much hope riding on the next chemo session. This time, I hope it brings down the swelling and stiffness in my tongue so that finally James and I can eat the same meal together. Married life so far as been great. I knew I'd like being a wife. Especially to someone who doesn't mind that I still want to hang out in bars with guys.

Chemo Follow-Up

2005-05-25T21:41:00.000-07:00

Met with Dr. B this morning. He's up to speed on last week's tracheostomy, and wanted to talk about any effects I've had from the first chemo session. The only side effect I had was mild nausea and fatigue, which is good news. We spoke more about pain management, and how I've been feeling. So he gave the green light for my 2nd round of chemo, which will be Wednesday, June 8th.

I'm worried because I've dropped down to 92lbs. I know most of it is due to my hospital stay. But now I've got to get extremely serious about gaining weight, not just maintaining it. Especially now since I'll be continuing with the chemo, and I ABSOLUTELY HAVE TO KEEP UP MY STRENGTH.

But there's also some good news. Whether it's due to chemo, the alkaline boosting protocol, or the herbal medicine, tissue loss on my tongue has halted completely as of yesterday. It's still swollen, but my breath hasn't been as bad and I haven't been rinsing out as much dead tissue for a long while. I can't begin to tell you how encouraging it is.

After my appointment, James and I went to Borders. I bought "The Doctor's Book of Food Remedies" and "Cancer: Fight it With the Blood Type Diet." The two books together go a long way towards helping me decide whether or not to have a blueberry protien shake (which has ellagic acids that are good against cancer cell production), or a banana shake (to help against diarrhea, which is common during chemo).

On the way home, we saw this clothing store in Silverlake where there were hats on display. So we pulled over since I absolutely need to wear one over the summer. But the hats were over $175, which makes sense, since the store was more of a vintage clothing/art gallery type shop. Such is Sunset around that area these days. However, there was a furniture store next door that had the same vintage/art gallery type feel. James and I found this incredible green sofa made in 1974. Even better, it has a pull-out bed and its mattress is still seal-wrapped in plastic. There were a few nics here and there on the false leather upholstry, but the springs had absolutely no rust, and IT IS SO COMFORTABLE. As all you Haruki Murakami fans out there know, a comfortable sofa is very important. Well, that's one less thing James and I have to worry about.

Too bad Adam doesn't have this kind of video camera

2005-05-24T20:30:00.000-07:00

Today's appointment at Kaiser was with Gretchen, a speech pathologist. She took me to X-ray and video-taped me drinking apple juice and bananas treated with some milky white stuff so they can track it on the X-ray machine. Sooooo wierd. I saw my skull and teeth chewing away on the banana slice, then followed it down my esophagus through the rib cage.

If it was anyone else I'm sure I would've been fascinated. Instead I got creeped out.

But she was very happy with how well I was doing so soon after surgery. There were a few swallowing procedures that Vicki gave me while I was still in the hospital. I'm glad they helped. The last thing my morale needs is to have a feeding tube installed so soon.

Post surgery depression or just another bad Star Wars movie?

2005-05-24T08:05:00.000-07:00

Marylou from the Hospice stopped by to check up on things yesterday morning. She is so sweet. There were just a couple of tubes and supplies we missed packing at the hospital. I cleaned out my trache tube, breathing was easy, and I was feeling really good because I was able to have a relatively big breakfast.

We went to the Archlight Theatres in Hollywood to watch "The Revenge of the Sith." Unfortunately, I missed Yoda arriving on the Wookie planet and who knows what else because of a phlegm attack. The theatre was so cold it made my breathing sound like I'd snuck in small animals. The pain level on my tongue shot up to 8 as well. I don't know how long I was in the restroom waiting for the morphine to kick in. But I'm sure I'll end up seeing the movie in the theater again before the summer is over, because what I did catch I kinda enjoyed.

Now this is what I've been hearing from nearly everyone I know who's seen it: "I liked it, but I didn't go in with any big expectations." But I can't help having expectations because Episode 4 is my favorite of all time. It was nice of George Lucas to include a scene where one of his live-action actors actually acted! Episode 4 is still my favorite, but as a pure summertime, popcorn experience I've gotta give it to Episode 3. Even if General Grievous was a little too Count Chocula for me.

But for the rest of the afternoon, my breathing got a little labored. Since we were out and about doing grocery and household shopping, I couldn't check my T-tube. When we finally did get home, I discovered that nearly the entire T-tube was filled with guck. So I cleaned it out, meditated some residual pain away, and fixed dinner. But I was still depressed.

James made some frozen yogurt to cheer me up. But I didn't even want to look at it. I tried having some chicken kebab and bell peppers, but I only managed some fresh spinach juice and peach yogurt. James tried to get me to eat more, but I was just so not willing. I watch the usual porn to get in the mood; Food Network, and episodes of "A Chef's Tour", "Simply Ming", and "Iron Chef America." But once the plate is sitting in front of me, nothing. Just the expectation of pain is keeping me from eating things that, really, I should have no problems eating.

In the past hour and a half, I barely touched my 4-grain hot cereal, and my pain level has been steady at 8, even after 20 mgs of morphine. Yet I have to see the speech therapist this morning so she can watch me swallow through some x-ray video camera. I've gotta eat something, otherwise they're going to install a feeding tube next.

I look at pictures from our wedding to cheer myself up. It was such a perfect evening. But aside from how great everything looked and sounded, knowing how much love and effort Adam put into organizing it is what really sends me over the moon. I think that he is such an amazing person, and I am so very lucky that he kinda likes me, too.

Home

2005-05-22T18:26:00.000-07:00

Got back about an hour ago after spending an exasperating day waiting for more trach-related equipment to arrive. Missed "The Revenge of the Sith" opening weekend. But with the new breathing hardware installed, I'm feeling very Vader today. Just ignore my moments of gurgly coughing.

So, now we're going to spend a romantic evening setting up my electric bed with the oxygen tanks, air compressors, and other machines and equipment that allow me to live at home. I missed James so much while I was at the hospital; nevermind that he visited me every day. I'm still getting used to the butterflies in my stomach when he refers to me as his wife, or tells someone, "I'm Laura's husband."

Gotta go cook a much missed organic, pro alkaline-type meal and get some rest.

Thank you everybody for your emails, comments, and best wishes. Before you know it, I'll be back at Cole's on a regular basis. So you see, the surgery is going to help me stay well longer and you won't need to worry so much.

Visitors

2005-05-20T23:09:00.000-07:00

After having spent a great afternoon practicing trache-care skills, getting cleaned up, rested, and gaining some confidence, I spotted Allan in all his Laker sweatpants glory standing outside of my ICU room. I couldn't believe my eyes. Especially considering how much he hates hospitals.

He and Ali came for a visit and I went from feeling 100% better to 300% better. Romain Clifton from Social Services came by as well, and was able to meet some of the folks she's been reading about on the blog. I love them so much. They came at a perfect time, too. I was feeling much stronger and I was able to ease their worrying. Of course, they tried to score meds when my morphine showed up. I still haven't come down from their visit hours ago.

Then Agnieszka,Shabnaz, Cari and Gina stopped by after work, and I was even happier. I could've flown home because seeing everyone again really helped. I can't wait until tomorrow's visits.

West misses East

2005-05-20T23:01:00.000-07:00

It takes a stay in the hospital for me to appreciate how much the anti-acidity, herbals, and just the little things I eat and drink at home help me so much more.

I rinsed my with water yesterday and it felt so acidic on my tongue. Just looking at its surface makes me very anxious because of the changes; I really feel it could've been alleviated, if not avoided, if I hadn't stopped the protocols during my hospital stay.

I miss the Food Network, the Travel Channel, HGTV, all of it. I have my Jack Kornfield CDs, magazines that James brings me and some ok cable channels here, but some elderly ICU patients in my wing had a really rough night. I wasn't able to sleep until 5 this morning.

I miss my friends, my building, the office, and the bar.

I also want to starting getting creative again. I finished knitting the purple scarf long ago. The plants are flourishing, and we're both itching to try out the gifts we received from the Home Depot.

But this tracheostomy procedure caught everyone by surprise. And I hate setbacks, especially when they scare people.

Play nice until I get back

2005-05-20T07:12:00.000-07:00

Thanks to everyone who's sent their best wishes. I've been told taht the airway is healing well, which was my main concern coming out of chemo. The tongue and jaw is still hurting, but brathing is no problem. And the hospice staff said that if anyone give me any guff about morphine requests, tell them to call the hospice. I won't be receiving visitorss until Saturday. By then I hope to have the smaller trache installed. I still don't know when they'll let me drink and eat again.

I've got a weird neighbor whose computer plays a drumroll sometimes. Otherwise the staff is great, my parents have visited, and James hangs out every afternoon until visiting hours are over. So everything is as peachy as can be expected considering I've got another hole in my throat. Everyone play nice with James while I'm gone.

Surgery is over

2005-05-19T13:56:00.000-07:00

Laura had the tracheostomy this morning and is feeling much better. She was able to sleep well overnight and felt much better this morning even before the surgery--so much better she tried to talk Dr McNicoll out of it, but he still recommended she go through with the operation to avoid any problems in the future. She will be in the hospital until Sunday. Thanks everyone for your kind words and thoughts.

James

Tracheostomy, again

2005-05-18T22:05:00.000-07:00

Laura and I went to see Dr McNicoll today about the breathing problems she's developed over the last few days. After checking her throat with an endoscope, he recommended she be admitted to the hospital and have a tracheostomy. She was admitted this evening and will have the operation Thursday morning. She will probably be coming home on Sunday. She had a tracheostomy as part of the battery of procedures during the first surgery. Dr McNicoll will insert a small tube in her neck at the same spot as the first time. She'll be able to open the tube any time she has problems breathing and close it when she talks. The doctor said it should be a simple procedure and she'll be awake shortly afterwards.

James

Full House

2005-05-18T07:57:00.000-07:00

The Arrowhead Water Guy, Nurse Marylou, Dr. Milch and Big Eric stopped by yesterday afternoon. I was so out of it they could've been Cher's farewell tour. But then Ali would've been there. And they brought goodies. Now I have boxes of morphine patches, a fresh supply of fact acting morphine tablets, and a little pill dispenser that lookslike a calendar. I wasn't quite awake, but James and Celia were there. James told me later that he lost it a little, simply becase I was mosty unconcsious. I think I caught a climpse of Celia just shutting down.

I took the patch last night along with a fast acting capsule for the pain and the breathing. It really helped until I wolke up at 1240am. Th hallunications started again. Nothing flying adross theroom but I kept asking janes if it was time to startkickingp people out since it was getting Laate. He would look around the emply apartment and say "What people???"

They're delivering an electronic bed so I can move my head up and down in case I haae problems breathing again. I'm also getting a walking chair, just in case.
hWierd things of allshapes and sizes aare poping ot of nowhereve; hobbits behind bookcases, tech workers behid laptop screenw, nuns praying behind the dining chairs. Then there are the jungle anmalsliving in my throat. I'll ge sitting quietly when a tiger in my throat decides to yawn or somehting. At least it's not in my chest. thaen I would have something to worry about.

I see Dr. MNicoll this afternoon. Because of my troupble breathing ettin worse, Mr. Milch asked if we shold coniser another tracheotomy. I'm all for it. Not being able to breath in the middle of the nigt is too much iek one f my worse phobias; being buried alive.

Another lovely night ruined by sleep

2005-05-17T16:40:00.000-07:00

I spent the day at my parent's house whie James go sme workdone in shool. It was verry mellow. I lsop most of the time whild Mom and Dad dod tjeortjojg.Gad cream of brocoli soupf or lunch and ass as right with the world.

Then I got all gtumpy, and was mostly able t keep it to myssflg.James took meo=hoe aferjjer a

The ADD Meal Plan

2005-05-16T08:14:00.000-07:00

I woke up early so I wouldn't get distracted by James' breakfast, which would of course be so much bigger than mine. I started off with things I knew I enjoyed: hot chocolate and oatmeal with apricot preserves. I finished the chocolate and got halfway through the oatmeal before I got distracted by the row of vitamins and supplements on the table. I'm considering whether or not to try and finish the oatmeal. It doesn't even taste like oatmeal anymore. My entire tongue is encased in this white sheet; I don't know whether it's to protect it or what.

I ate next to nothing yesterday. James was disappointed when I initially told him not to fix me a blueberry protein shake, but I gave in. There's so many things I still need to keep eating regardless of whether or not I can taste them. The pain in my mouth hasn't ben really bad lately, it's like a cement mixer churning in the other room. But eating is like walking into that room, I don't want to walk into that room.

James was able to paint the bathroom ceiling yesterday. I can't even focus long enough to finish watching Design on a Dime. Reading any of my books would be futile. So I just background whatever is on TV, and tell James how cute he is when he takes a break. That's pretty much all I got.

I'm spending today at my parents'house since James has to work, A change of scenery might be good.

When you have insomnia, you're never really asleep; and you're never really awake.

2005-05-14T20:43:00.000-07:00

Four a.m., and I'm crawling underneath my dining set, silently cursing the parking lot lights across the street. Since I don't have curtains yet, anyone can witness my search for a tab of fast acting morphine that rolled off my palm in the semi-darkness. Only my husband would think it was cute, but I feel like Gollum.

Chuck left for London last night, Andrew and Catherine are leaving for Paris tonight, and Paul will be leaving for Italy next week. Summer's coming.

One more day of Xeloda, and hopefully I won't be as loopy as before. It takes me twice the time to return email because I nod off in the middle of typing. I was so disoriented this morning, I didn't recognize James or my apartment. I figured maybe he was some guy who stayed over after a party I threw the night before. Is it the morphine or anzamet that's scrambling my brain?

My parents stopped by this morning for a visit Angel said they were freaked out by yesterday's posting. I feel terrible about that. But I'm so out of it right now, nothing is really getting through to central command. I'm trying to eat some tofu while I type, but everything is tasting metallic today. There's also the occasional wave of nausea, but mostly, I'm shuffling around like a stoned walrus. James is my patient and benevolent caretaker who found me off the California Coast, tangled in seaweed after the record winter storms.

It's been ten months since the diagnosis. It will be another ten mnths before my chemo sessions are done. I'm a wreck.

Planning for the end

2005-05-13T20:41:00.000-07:00

Derrick from Hospice Care came by the apartment this afternoon to check up on me. We went over the really depressing stuff: the DNR and "Advance Healthcare Directive" forms. Basically, who's in charge when I'm unable to make medical decisions on my own. James knows better than anyone what my wishes are, but in the event that he's not available if something should happen, I'd better get it all down in black & white.

Derrick was actually very nice, and clued me in another Hospice Service: music therapy. I would love to get someone to come in on a regular basis and play cello, for example. Turns out, the doctor who championed the whole hospice care program is the same doctor who's coming over next Tuesday. Lucky me.

I was looking over my meal and medication logs, and I'm consuming more pills than food. I expected it would happen eventually, but not so soon. The morphine is helping with the pain, but not with my lack of control over my tongue. So, more juicing and protein shakes again, just like after the surgery.

Waiting to Inhale

2005-05-12T17:51:00.000-07:00

The breathing problems I was having Tuesday night popped up this afternoon. The morphine and the Anzamet kept me drowsy from lunch time until 4:30 this afternoon. But for whatever reason, I had another phlegm attack, and couldn't breathe lying down. So, again, I stacked every pillow in the apartment against the wall, and crashed out sitting straight up.

All this drowsiness is getting in the way of my meal plan. I only had the bowl of oatmeal and a blueberry protein shake today. By the time I was done cutting up some watermelon it was too late to eat it since I have to take the Chinese herbal liquid on an empty stomach. But I suppose I should be thankful that I still want to eat.

The nausea was bad around 11:30 this morning, but then subsided all of the sudden. I just wish all the medication didn't make me so tired all the time. Chuck, Andrew, and Catherine are leaving for Europe this weekend, and I really wanted to cook dinner for them. But I barely have the strength right now to bake a cake. I was also too tired to call Big Eric's contact at Cedars-Sinai.

Originally, Dr. B said he wanted to schedule 10 chemo sessions every 3 weeks. Instead, he changed it to every 28 days. June 8th will be my next scheduled session. Except for early this morning, I haven't needed the fast-acting morphine all day. I hope that's a good sign.

Day 1 after chemo

2005-05-12T09:04:00.000-07:00

Last night was the best night's sleep I've had in a very, very long time. I had no problems breathing, the morphine did it's job, and I only woke up once to go to the restroom. I felt so rested that I was able to do yoga before breakfast. But at the end of my session, I got a slight headache. On some poses where I had to arch my back I did hear some wheezing from the back of my throat. So I took some oxygen while fixing oatmeal. Not sure if it helped, though.

So after taking 10 capsules of vitamins, herbal medicine, and medication, and half a bowl of oats, I started feeling nauseous and a little light-headed. My anti-nausea medicine is the stuff that makes me light-headed. But it wasn't very bad. I hope that means that the herbal stuff is doing its job.

The hospice doctor is scheduled to visit next Tuesday. I'm supposed to get in touch with Big Eric's contact at Cedars Sinai, and there's still a stack of thank you cards to get through. So I really should stop staring at wedding photos and get to work.

Chemo

2005-05-11T17:19:00.000-07:00

They weighed me, checked my pulse rate and blood pressure, then stuck the needles in my right vein. We scored a private room with a TV because we showed up so early. But the TV stayed off because I was floating in and out of consciousness and James was catching up on his reading. I'm supposed to take the time-release morphine pills at 10:00 am, and they make me very drowsy. That combined with sleep deprivation makes for a very loopy patient.

Dr. Buchschacher and the pharmacist stopped by with questions and information on the chemicals being pumped into me. Thankfully, James was alert and filled-in the blanks as well as remembered all the dosage info for the new pills I was sent home with. I love that my new husband has a medical background. Whatever I don't get he explains to me. We also went over all the Chinese herbs I'm taking and Dr. B said they shouldn't be a problem.

Turns out, my appointment with the Pain Management Clinic is NEXT Wednesday. So we woke up early for no good reason. Not that it mattered on my end of the bed. I don't know if it's stress from the impending chemo treatment, or recovering from all the talking I did over the weekend, but I've been having a lot of trouble breathing at night. I can only breathe if I'm sitting up, and even then the airway feels constricted. I have an appointment with Dr. McNicoll next Wednesday so he can take a look at my throat with the scope.

I was a little bit nauseous, but fresh fruit did the trick. I can't not eat at this point. We stopped by the farmers market in Culver City the other day and brought home a lot of fresh fruit and veggies. But I haven't had a yoga session since before the wedding. I need to get back in to the swing of that, too.

The hospice delivered an oxygen machine and four oxgen tanks this afternoon. It's just for those times in the middle of the night when wake up struggling to breathe. It's just a precaution; that's what I keep telling myself. Just having this equipment in the apartment makes me feel like I'm preparing for the worse. I have to keep assuring myself that this is going to help me get well.

James has been so wonderful, as usual. There is so much to remember and do and deal with now that chemo has begun. Leaning on him makes focusing on getting well a lot easier. My father asked James on Sunday to start calling hime "Dad." James' own father died when he was an infant, so he's never called anyone Dad. It means so much to me. It means everything.

Morphine's back on the menu

2005-05-10T19:38:00.000-07:00

James and I had our first guest over this morning, and she brought gifts!

Marylou from Kaisers Hospice Care came by to get me started on pain management. I have time-release morphine capsules I'm supposed to take once every 12 hours, and a fast acting dose I take as needed. Because it's a controlled substance I'm supposed to log the dosage.

We also talked about my trouble breathing at night, so she ordered an oxygen tank for me. A doctor is supposed to come by next week to see how I'm doing, and a dietician is going to help me on foods and recipes so I can eat more. There was a laundry list of drugs she ordered that I may or may not need in the coming weeks.

Then she whipped out the DNR form: Do Not Resuscitate. Signed it.

Tomorrow morning, before my first chemo treatment, I have an appointment at the Pain Management Clinic to go over any other options I may have. I'm hoping that acupuncture is in there. But if not, I have a number for a guy in Silverlake. I'm bringing a bag full of my Chinese herbal medicine so the doctors can let me know of possible negative substance interactions.

James and I opened our joint checking account this afternoon. We went to the B of A branch in Chinatown since it was so close by. Afterwards, we stopped by an herbal medicine store because Chuck said his mother suggested I take Yun Zhe to boost my immunity. Got that, and had a nice talk with the man behind the counter.

The morphine capsules really knocked me out. But I did feel rested afterwards, and it really helped with the pain... finally.

Mrs. Adams

2005-05-09T09:04:00.000-07:00

We haven't gotten any pictures yet. But believe me, it was the most beautiful wedding I've ever been to. And it was my own!!! It was easily the best night of my entire life.

The weather was perfect, the food was perfect, and everyone looked so happy and beautiful. The ceremony began a little late because of my hair, but the flowers and candlelight looked just as romantic at night as they would have at sunset.

James looked so handsome. I tried looking around at the guests as I walked down the aisle, just to be able to remember as much of the evening as I could. But as soon as I had a clear shot of James, I couldn't take my eyes off him. One of his friends said that I was beaming through the entire ceremony.

Evelyn caught the bouquet and John L. snagged the garter. We had a candlelight procession to Cole's, where the party continued. I love James' friends. I met a few of them at different times before, but they were so sweet that night. Scott, who I hadn't seen in 3 years, was so much fun. I had no idea he knew how to dance!

So many people complimented us on the ceremony. They asked about the music, the poems that were read, who's idea was what. But the best part is that everyone seemed so happy to be there. A few people cried during the ceremony, but then they started crying all over again talking about it afterwards, too.

And finally, after six years of bugging him about it, James danced with me. It wouldn't have happened if Catherine hadn't insisted, so thank you, Cat! There was no conga line or chicken dance, but cousin Angel started giving lap dances, Adam began drumming on light fixtures, and a speaker fell right off the wall. Oh yeah, and James' friends are really good kissers!

Everything else would fall under the heading "You had to be there." And I am so glad I was.

Last words before the plunge

2005-05-07T11:40:00.000-07:00

I finally made it to a strip club the other night. Sam's Hofbrau in Los Angeles would be Cole's if Cole's had strippers. The vibe inside was eerily similar. There were women doing things with their ass I never saw before... and in perfect time to the music!!!

The original plan was to score lap dances, but the only girl I wanted one from spent nearly all her time with a guy who was throwing bills at her to make sure she stayed with him. But when it was her time on the pole, Chuck, Paloma and I left our booth and sat ringside. When she saw the crown and bouquet Paloma made for me she exclaimed, "Oh, you're getting married! Congratulations!" I scored two hugs, a kiss on the cheek, and a bite on my ear! I forget how many bills I stuffed in her g-string, but it was kinda fun. She was just so nice!

But I felt that if I got a lap dance from her, it would only make me sad. Not sure exactly why, but it's for a lot of reasons. We didn't stay long because I've been feeling tired earlier and earlier. But I did have fun.

Last night was the rehearsal. We both got teary during the 2nd run-through because we said our vows. Catherine and Celia cried, too. It's going to be a beautiful wedding. I still can't believe I'm going to have a husband before the day is out.

Leslie, Laurence, and Ryan threw an excellent rehearsal dinner. They grilled chicken and asparagus, and there was polenta with mushroom ragout. It was soooo great. AND Leslie made her awesome chocolate mousse. James made a speech thanking everyone, and made my sister cry again.

Eight more hours to go.

Machine Shop

2005-05-03T20:37:00.000-07:00

I left work early today because I felt so exhausted. That cold that's been going around is trying to chip away at me. So I went home and went straight to bed. I felt much better after a 2-hour nap. But I still didn't feel much like doing anything but staying unconscious.

I tried staying alert at my desk, but my body wasn't having it. I let my body decide what I should have for dinner as well. I ended up making macaroni & cheese, with sharp cheddar, gorgonzola, and parmesan cheese. All that grating and stirring helped get my mind off my tongue. I also made a fresh spinach salad with tomatoes and my shallot vinaigrette (actually, it's Todd English's). All the fresh spinach and fresh veggies I've been forcing myself to eat has been paying off. Last night, my pH level was 7.5! Supposedly, cancer cells don't do well in high-alkaline environments. So I was able to get my acidic levels low and alkaline high in just a few days.

Again, the human body is a screwy thing.

I wanted to make another protein shake tonight, but it got too late since I have to take my herbal medicine at 9:00pm on an empty stomach. So much of what I have to do gets easily conflicted if I get the slightest bit lazy or careless. Focusing on what I have to do physically is a kind of emotional therapy. Regarding my body like a machine I have to perform care and maintenance on helps me cope. Especially since most of the things I have to do have an almost instant positive effect.

Keeping it together

2005-05-02T21:16:00.000-07:00

Today was actually a really good day pain management-wise. I didn't need to dip into the Motrin bottle while I was at the office. And I was able to eat a ham and cheese sandwich with some fresh fruit for lunch.

But after dinner, there was so much dead tissue near the tumor that I had no choice but to cut it out myself. I nearly passed out in the bathroom. I wanted to curl up in a ball and never get back up again. But I had to keep it together because I was late for meeting with Adam about the wedding ceremony. So I sucked it up, rinsed out my mouth, and got my ass up to the penthouse to talk lighting and flowers.

If it weren't for James and this wedding, I wouldn't even be trying chemo. If it weren't for my friends and family, I probably would've died weeks ago. All the hope I have for myself and the future is about never wanting to leave the people I love so much.

It doesn't matter how much of my dead tongue I end up cutting out, the image of James, my family, my colleagues, and everybody who's coming to the wedding Saturday can always get me off the bathroom floor.

Carolyn sent me a care package today. It included a copy of the Lord's Prayer and a toy stuffed lamb. It's so adorable; I've named it Joaquin. Her emails and gifts have helped me more than all of the postings and webpages on PlanetCancer.org and the ACS website. I don't even really visit those websites anymore.

It's getting harder every day. But I'm hoping that chemo won't be as bad as it could be. I have to keep focusing on getting better so I won't have to leave everybody.

Overwhelmed

2005-05-01T09:32:00.000-07:00

James and I picked up our wedding rings yesterday. We just wore them out of the store, grinning like idiots.

That was the only good thing about this weekend. The tumor is wreaking havoc on what's left of my healthy tongue. There was some tissue loss when I brushed my teeth last night. It's scaring me to the point where the thought of eating, or putting anything in my mouth, brings me to tears before almost every meal. It's become a struggle just swallowing pills. No wonder I've become anorexic.

I don't think there's enough protein powder and Motrin to get me back to 115 lbs. For the past month, I've been fluctuating between 100 and 104. I want to eat more, but everything organic seems so expensive. Especially meat. If it was simply a matter of gaining weight I would be super-sizing like crazy. But according to my reading, my unhealthy fast-food past may be a big contributor to the fix I'm in now.

Side effects from radiation are still going strong: aching and stiffness in the jaw, ringing in the ears, fatigue. This past week was the worse it's ever been. It's been so frustrating because I'm doing everything I'm supposed to be doing: exercising, meditating, eating lots of small healthy meals, taking multi-vitamins, and taking the herbal medicine.

Then again, I'm not getting as much sleep as I should, and I'm still getting rid of stress in my life (as much as I have control over, anyway). Leslie pointed out the other day that I'm creating unnecessary tasks for myself for the wedding. Really accepting the fact that I can't do as much as I used to has been a tough hurdle.

James tells me I'm doing great. That I've taken on so much already and I'm going to be alright. I want to believe that. When he tells me, I do believe it. But when I'm not overwhelmed by the pain from the cancer, I'm so happy because of the wedding and marrying James. It's so much for just one person to feel. I wish there were two of me to live my life.

"C" is for cookies, and cookies are for me

2005-04-28T22:31:00.000-07:00

True to her word, Amy showed up at Cole's with a box full of homemade chocolate chip cookies. They were excellent. Then Chuck (who promises to come to the wedding dressed as Al Pacino) broke out the blender and mixed my favorite milkshake. The ingredients are a secret, and we haven't really named the drink yet. But as long as he makes them I'll drink them. At this rate, I'll have no problems fitting into the wedding dress. Nine more days and counting!

I gave James two more wedding presents tonight: a coffee mug from the Venetian LV and Nick Cave's latest CD. The first gift I gave days ago; I told him I would take his name. I have two more gifts waiting in the wings. As the wedding is getting closer, we've been getting more affectionate; like high school kids. It's so odd that after six years I can still get giddy just looking at him. I think I'm going to enjoy being married.

I told Ali on the way to Vegas that things have been feeling so right since James and I decided to get married that I should've married him three years ago. Ali said no, because then he couldn't be my Maid of Honor. I guess things do happen for a reason.

John and Paloma have agreed to send me off with a couple of lap dances next week. And Chuck, Andrew, and Catherine have agreed to witness/participate in the blessed event. So while James is at his bachelor party, I guess I'll be at my first strip club.

How much do you tip for a lap dance, anyway?

I had a full tank o' unleaded

2005-04-27T07:23:00.000-07:00

Saturday night, after closing the bar at 3am, Ali and I drove off for Las Vegas. The original plan was to drive the entire way, but after babysitting two drunk musicians at Cole's, Ali decided that we should fly out of Ontario Airport instead. So we caught a 6am flight.

We gambled, I ate, scored a day at the spa, and a little black dress at Kenneth Cole. Ali introduced us to all of his dealers and pit bosses, telling EVERYBODY he was my Maid of Honor.

Kimberly flew in the following afternoon, and Ali treated us to an amazing dinner at The Palm @ Caesar's Palace. I had an enormous 3 lb. lobster! We were quite a sight: a Persian guy with a tall, blue-eyed blond and a tiny Asian. He kept making "How much for your women?" jokes because of the the stares we caught.

It was easily the most fun I've ever had in Vegas. Ali insisted on travelling strictly by limo everywhere, threw bills right and left, and made damn sure I ate. If we had Dr. McNicoll's email address, Ali wouldn've sent him pictures of me at every meal from his camera phone.

You haven't been to Las Vegas until you've been there with Ali. He's the best Maid of Honor... EVER!

See Laura's friend rock!

2005-04-22T11:36:00.000-07:00

Longest Lunch Theater Company Kicks off its First Annual Eat It Festival!

East Village - Eat It begins its first annual weekend of comedy on May 27, 2005. Produced by the New York-based non-profit Artistic Evolucion, Inc., Eat It is a creative collaboration of the Longest Lunch Theater Company and independent artists from across the country.

Also featured is Artistic Evolucion’s, Allegra McBane, in Rainbows and Razorblades: Cabaret with Vicki Moonbeam.

In Rainbows and Razorblades: Cabaret with Vicki Moonbeam, Allegra McBane takes the audience on a journey through the heartbreak and sorrow of love with her unique renditions of classics. Born with little to no natural talent of her own, Vicki Moonbeam has been enchanting audiences on the assisted living circuit across the Northeast for two years. Come hear her tales of woe set to music, and enjoy a free PBR, her signature drink—with price of admission.

Eat It wraps up its weekend of theater and comedy with the Best of the Fest variety show of festival-featured artists, new faces, burlesque performances, and much much more.

Eat It will take place on May 27 and May 28 at the Red Room in the East Village, 85 E. 4th Street between 2nd & 3rd Avenues, 3rd Floor (no wheelchair access) and Best of the Fest on May 29 at the Slipper Room, 167 Orchard Avenue. For advance tickets and more information, please visit our website, www.eatitfestival.org.

Happy Birthday, Allan.

2005-04-21T08:44:00.000-07:00

It's actually on the 22nd, but we ambushed him at Cole's last night. Like last year, he got a cake topped with Laker bobble-heads. This year, identifying the players was a challenge. No pictures, unfortunately. It was all last minute because Allan has gotten a lot more paranoid around the big day. But Ali insists on celebrating whether Allan wants to or not (isn't that what friends are for?).

My brother dropped off the Chinese herbal medicine last night. It's a big box of 10ml vials I'm supposed to take throughout the day on an empty stomach. My meals and medicine intake will be completely regimented. I'm supposed to avoid crab, chicken skin, chiles and alcohol. But garlic, mushrooms, vinegar, and bean products are supposed to be good. I just took one of the vials. Tastes exactly like you would expect medicinal herbs to taste like: echhhhhh.

I've been reading "The Anatomy of Hope" by J. Groopman, MD. It's on my ever growing reading list. After reading the different stories of cancer patients who either lived or died, I think about my blog; am I chronicling the way I lived or the way I died?

Nothing is certain. Mostly I still have hope. And on moments when I have none, there are plenty of people around to loan me theirs. Planning a wedding instead of a funeral helps a lot. Planning for things months away, like visiting James' family in August, building a 2nd floor mezzanine in my studio, and checking out the tail end of the Venice Biennale helps more.

When I broke the news to Ali he said, "But who's going to teach my daughters how to handle players?" He was only half joking. I almost cried. But looking forward to things like watching my friends' kids grow up makes the probability of really bad chemotherapy side effects worth it.

There are too many things worth sticking around for.

Relief

2005-04-20T08:07:00.000-07:00

The pain has gotten more manageable. Since I can't spend all day doing yoga or meditating, I've stopped trying to be a hero and started taking as much Motrin as needed, when I need it. I also took Chuck's advice and started using the Biotene Mouthwash for dry mouth. It's my new favorite thing since it also eases some of the pain. I'm even able to eat oatmeal for breakfast this morning.

It's my fourth day taking red ginseng extract. I don't know if it's doing any good, but it's not hurting. The dried mushrooms are pretty tasty, too. I drink the water I boil them in like tea, then cook the mushrooms in whatever I'm making for dinner that night. I'm not sure if they're the right mushrooms, but as long as they're wild mushrooms, they're doing some good.

I had a lot of fresh fruit for lunch yesterday. I was just shoveling the stuff as quickly as I could stand. But the wierdest thing was at dinner. I made a spinach salad, and couldn't stop eating it. Maybe it's true that the body craves what it needs, because before the first bite I was much less excited about it.

I've also started drinking Ensure because I'm not gaining any weight. Here's a statement that will make most brides hate me: if I'm going to fit into my wedding dress in two weeks, I'd better keep eating.

2-hour meals

2005-04-17T20:40:00.000-07:00

It's getting harder to eat. Even carrots hurt now. Mostly, I cook diced tomatoes, cabbage, mushrooms, and anything soft in either chicken or beef broth. I can still have beet salad, though. I've got a great recipe with a shallot vinaigrette and chevre. It doesn't hurt too much as long as I keep it on the far right side of my mouth. Even with Motrin, it just takes me over an hour to eat.

Oatmeal has become almost unbearable. I've had to make time for either cheese and spinach omelets or pancakes in the morning. Otherwise, it's maple yogurt with lots of flaxseed. Paul M. introduced me to the best blueberry pancakes the other day. They're at a diner in North Hollywood called Sitton's. I had them with a side of vanilla ice cream. I'm definitely going back for their milkshakes.

I'm still waiting for the Chinese herbal medicine to arrive. Yesterday, I went to an herbal store and scored some dried mushrooms and red ginseng extract. The goal is to have the most insanely strong immune system possible, and reduce the amount of acid while increasing the amount of alkaline in my system. So many things to consider, especially for someone whose idea of a meal was a Superstar Burger value meal.

So many changes, with more to come.

12 days

2005-04-17T19:35:00.000-07:00

James and I have been engaged for 12 days, and we're so happy. We told my parents yesterday that we were getting married. The word "shocked" isn't strong enough to describe their reaction. But they like James, so it wasn't a bad surprise. The bad surprise was telling them that Ali is my Maid of Honor. Over lunch, James asked my brother Angel to be his Best Man.

My wonderful, amazing, crazy friends are throwing me a wedding. The reception and ceremony will be at Adam's penthouse, right on the roof of my building, and the party afterwards will be at Cole's, Leslie and Laurence are hosting the rehearsal dinner right across the hall, Allan is officiating, Paul M. is singing, and it's all so unbelievable that no one believes me when I first tell them.

How the hell did I deserve to be surrounded by the most amazing people ever?

Hellmouth

2005-04-16T10:35:00.000-07:00

Ali and Giddy (his aunt) told me very nervously that sometimes I have really bad breath. He said his mom was the same way when she was going through cancer treatment. Because of how much my mouth has been hurting, I haven't been brushing my tongue. I guess I shouldn't skip that. Combined with how acidic my saliva has become... well, you get the idea.

I can't really use mouthwash because of the alcohol content, and the breath strips are out because they hurt too much. So Giddy said I should chew on mint leaves, then tossed over a bunch of candy cane drops.

What a pain in the ass.

The tumor is stiffening up the left side of my tongue, so now I'm swallowing in a really wierd way. Result: I'm burping an awful lot; about as frequently and loudly as a nine-year-old boy. James thinks it's funny, but the novelty is dying out really fast with me.

Chemo

2005-04-14T17:18:00.000-07:00

I spoke to Dr. B this afternoon. He looks like the actor on the West Wing who took over Josh's job, but with longer hair. A complete 180 degree turn from Dr. S. He talked about chemo drugs that I'd never heard of, so of course 90% of my questions went right out the window. But we talked about shrinking the tumor rather than the all-or-nothing tone of curing outright. He was very encouraging and had loads of positive energy. I like him.

So, on May 11th, I'll start on a Carboplatin IV in the chemo clinic. If I don't get sick, I'll have ten sessions, once very three weeks along with 2 Xeloda tablets a day. I probably won't lose my hair, and nausea will be kept to a minimum.

I asked about possible negative interactions with Chinese herbal remedies. He said their hasn't been any definitive proof of herbal remedies helping or hurting, basically leaving it up to me. I haven't decided yet. But I think I will be starting acupuncture soon for pain management.

It was a really good appointment. I'm feeling a little tired, but also a little hopeful.

CTScan Results

2005-04-14T08:39:00.000-07:00

Good news! The cancer cells haven't spread to any other parts of my body. It felt really great to give my friends some good news.

As promised, Romain met me at Dr. McNicoll's office. James came along as well. Dr. McNicoll and I talked about pain management, the irritation on my tongue (due to the tumor), the tumor as it appears now (half on the reconstructed tissue, half on my original tongue), and sending any medical records to other cancer facilities/hospitals. I made him laugh when I told him that I named my tumor. We also talked about clinical trials, symptoms if things make a turn for the worse, and Steve McQueen. I love Steve McQueen.

He told me to keep up the great attitude, and to call after my appointment with Dr. B this afternoon.

I cooked dinner for James and Adam last night. It was an opportunity to use the black truffles I bought last week. We shaved some over risotto, it was wonderful. Then we hung out at Cole's with Ali. Mike came by after work and finally met James.

They had Manhattans, Chimay, Woo-woo's, and then champagne up at Adam's place while I sat back and laughed. It was so great seeing some of my favorite people having a good time. This is my idea of medicine.

Bang Bang

2005-04-11T20:40:00.000-07:00

We shot at silhouettes. But instead of aiming at the bulls-eye on the chest, I aimed at the mouth. Ali nicknamed me "Crazy" for the rest of the afternoon, as in "Damn, you're good at this, Crazy." Or, "You want some ice cream, Crazy?"

I tried out Ali's 9mm, .40 calibre, and .357 revolver. It was oddly relaxing after a while. It wasn't the first time I'd gone shooting, but I was still nervous beforehand. I'm usually nervous when we go over safety procedures.

By the third clip, the testosterone got out of hand. After shooting off a round with the revolver Ali commented, "You know, [mutual friend] couldn't handle that one." I reminded him, "[Mutual friend] can't handle a lot of things."

There's nothing like getting in touch with your inner bitch on a Sunday afternoon.

Fragile

2005-04-09T09:22:00.000-07:00

I mentioned earlier that Allegra is getting me in touch with specialists in alternative health who helped her friend's mother through stage III ovarian cancer. I took a look at one of their websites this morning.

I've never been skeptical of alternative medicine. A friend in college contracted HIV back in the early 90s. She swore by holistic medicine, and as far as I knew, never developed AIDS. And I always felt it was a dreadful idea to blast a body with radiation to make them healthier. Nevermind that it didn't help me.

But I also say things like, "Heard of it. Never saw it. Sounds like bullshit to me."

The prospect of being treated by something called "BioConscious Medicine" gives me pause. I love science, technology and modern convenience, and how walking down congested city streets makes me feel hyperconscious and powerful. I don't like how buying organic foods, substituting green tea for my lovely espresso, and daily meditation make me feel so fragile.

I'm not in danger of becoming a hippie and opening an ashram in Venice Beach. I just miss feeling so young and strong that I can take my health for granted.

CT Scan

2005-04-08T09:46:00.000-07:00

Maria called yesterday afternoon to tell me that the CT Scan is ready. I have my appointment with Dr. McNicoll next Wednesday. The next day I see Dr. B.

Thank Buddha for Jack Kornfield's meditation CD, otherwise my side effects would be driving me crazy. I've got dry mouth, excessive phlegm, and drooling all at the same time; my ears are still ringing; and because of the tumor and swelling, I don't recognize my own tongue anymore.

It's such an enormous disconnect from the rest of my body because everything else looks and operates just swell. My arms look insanely strong (they're really not), on a good day and in the right light I have Bruce Lee's abs, and I can jog for blocks without my lungs exploding. My skin is continuing to firm up, so every time I do yoga I find another unrecognizeable part of my body. I still do a double take when I catch a reflection, because I still picture myself the way I looked 40 lbs. ago.

In the hopes that chemo may still be an option, I've been trying to gain ten pounds. It's a lot harder than it sounds because I'm trying to do it with the least amount of processed flour, sugar, and butter. Because of the pain, I've adopted the tapas lifestyle of "eating a little bit, often." Yesterday's lunch lasted an hour. Dinner lasted 90 minutes.

Everyone is conspiring to fatten me up. Leslie made homemade ice cream last night, and it was sooooo gooooood. Paloma invited me over for brunch this Sunday, but Ali already promised to take me to the best Persian food in Orange County(?). That is, after we go shooting. He thinks I need to let out some aggression with a few 9mm handguns.

Allegra is putting me in touch with an alternative medicine contact. Her friend's mother survived stage III ovarian cancer 7 years ago.

The human body is a screwy, screwy thing.

Time flies, regardless.

2005-04-07T10:54:00.000-07:00

I postponed my appointment with Dr. McNicoll yesterday. Maria is going to call me when the results of last week's CTscan are ready. She also cancelled the appointment with Radiation Oncology scheduled for tomorrow. What would be the point?

I have an appointment with a different Medical Oncologist on the 14th. Romain says that Dr. B is not as rigid with his diagnosis as Dr. S, and is more open in discussing what the patient wants as opposed to what he feels the patient should do. If chemo can't cure me, but can buy me some time I'll do it. Who knows, it may not make me as sick as Dr. S. thinks it will.

My mother has been gathering telephone numbers from her friends at Kaiser, Filipina nurses of course. Telephone numbers for clinical trials and 2nd opinions. It's what I've been doing all week. That and trying to eat more. I've dipped below 100 lbs. While Calvin Klein may think I look fabulous, I don't. The other night, Ali and Leslie wouldn't let me leave Cole's until I cleaned off my meatloaf dinner.

I've also been trolling the message boards on PlanetCancer.org, and developing a new eating strategy based on the meal journal I've been keeping. I could definitely be doing better.

On Monday, my brother told me not to become fatalistic. I'm trying. I'm trying to find things to look forward to. I'm trying to imagine a life beyond the next three years.

Ever since I was little, I've wanted to be a grandmother. I always imagined that on my deathbed I would be surrounded by my grandchildren. I let go of that image this week. But I'm not angry anymore.

James

2005-04-06T19:01:00.000-07:00

We're back together again. Engaged, in fact. Apparently, I drunk-dialed him after the Haggis Party and told him what Dr. McNicoll said. He came right over. He claims he proposed, but I was so drunk I don't even remember waiting up for him. Although, when I woke up to find him sleeping next to me the next morning I wasn't surprised.

That's when I asked him to marry me. He said yes.

We've actually been talking about getting married for over three years. But since I wanted kids and he didn't, we just stayed best friends. But since I won't be having children, there's no reason why we should waste any more time being apart.

Haggis

2005-04-06T09:46:00.000-07:00

Adam organized an amazing Scottish dinner in my honor. I just thought we were going to have haggis, which I've always been curious about, but it turned into Scotch, ceremony, poetry, bagpipes, and one of the most wonderful dinner parties ever.

Adam, Ali, Chuck, and Andrew wore kilts. They dressed me up in a Highlander drum major outfit, the guys "played" bagpipes, and we paraded the haggis around the penthouse before the ceremonial cutting, complete with Robert Burns. It was insane!

The food was wonderful, though it wasn't true haggis because it wasn't cooked in a sheep's stomach. But the Scotch was plenty authentic!!! We took a lot of pictures, the last five of which I don't remember posing for. The guys took off their underwear for the sake of authenticity. Catherine, Megan, and I did the same... for the sake of authenticity. Kimberly was the only holdout. That's okay, though. We'll get her in Vegas.

The next morning I remembered where my underwear went, but I don't know how I got home.

Pictures to follow.

The Plot Thickens

2005-04-04T19:02:00.000-07:00

Dr. McNicoll called me this afternoon. It's never a good sign when he calls me on a Monday. I was in the corner dressing room at Target trying on yoga gear when my cell phone rang. He found out some of what Dr. S told me last week. I think he was a bit upset because after I told him that Dr. S said chemo won't cure my cancer, he repeated twice (and quite forcefully) "That's a very blunt way to put it. Accurate, but blunt. That's very blunt, but accurate... "

Now for the kicker: I asked him if Dr. S was right, and that we should talk about surgery, and he gave a lot of explanation as to the nature of my cancer and answered some of my questions. But basically, Dr. McNicoll said that surgery won't cure my cancer either. The cancer cells have likely spread, and that cutting me again is not something he believes will help. He said that he sent me to Dr. S because there are oncologists who are very aggressive in going after cancer cells. I may get sick, but I can always stop chemo treatment if I do. He reiterated that he's not a chemo specialist, but that he does know that surgery won't cure me.

I asked if he could suggest someone for a second opinion. For surgery he mentioned a guy at UCLA who he trusts and has a lot of confidence in. I said that I meant another oncologist. So he gave me the name of another doctor at Kaiser.

There was much more to our conversation, although my memory is failing me. If radiation didn't work the first time, it probably won't work a second time. Chemo won't cure me, only shrink the tumor. The cancer will spread, if it hasn't already. Surgery won't cure me.

I also remember him saying that he's seen my cancer before, it's very common. I have anywhere from three months to three years left. I guess anything I do now would be about increasing the length and quality of my life as much as possible.

Today is my Dad's 70th Birthday. We had a family portrait taken after I spoke to Dr. McNicoll. I asked my brother to meet me outside the photo studio early, and I told him in the car. I haven't told anyone else.

I'm afraid.

Surfacing

2005-04-03T11:02:00.000-07:00

Ten years ago I got a tattoo on the back of my neck. For everyone throughout the years who've been bugging me to tell them what it means, you're patience is about to pay off; it's the Chinese character for "hoping." I got it during another low point to remind myself- to get in the habit of being hopeful. It worked then. I've been rubbing it like a talisman since the 2nd biopsy. Maybe when this is all over I'll tell you what the character below it represents.

Last night, Chuck and I attended the Bill T. Jones/Arnie Zane Dance Company performance at the Music Center. It was amazing. I've been wanting to watch this company ever since I read Vanity Fair's write-up on "Last Supper at Uncle Tom's Cabin" back in the 90s. So that's another item crossed off my "someday" list.

I've been crossing a few things off that list lately. It's one of the upsides to having your life threatened.

During the walk home afterwards I told Chuck about the cancer coming back. We hadn't spoken for almost two weeks because his girlfriend was visiting on her spring break. I don't know if it was because of the show, how we are, or my meditation paying off, but I wasn't sad or angry when I told him.

One minute we were walking past the L.A. Cathedral talking about attending mass tomorrow for the Pope's death, the next I'm describing Dr. S's prognosis. It's so easy talking with Chuck about my cancer. Maybe since his mother is a survivor he gives off the attitude of "everything will work out alright," and it's very calming.

I've been avoiding James for the exact opposite reason. With Chuck (and John come to think of it) I don't feel self-conscious when I talk about the cancer. But since James was right there with me the first time, especially through the bad stuff, it's harder leaning on him this time around. He knows too much, and I feel guilty putting him through it all over again. But mostly, I don't want to re-live the crime, and he's a star witness.

No more Mr. Nice Guy

2005-03-31T18:19:00.000-08:00

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...

2005-03-29T14:02:00.000-08:00

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

2005-03-26T09:24:00.000-08:00

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

2005-03-25T18:24:00.000-08:00

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

2005-03-24T21:39:00.000-08:00

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

2005-03-22T18:01:00.000-08:00

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

2005-03-21T21:44:00.000-08:00

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

2005-03-19T11:28:00.000-08:00

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!!!

2005-03-18T07:55:00.000-08:00

Oral sex link to mouth cancer

- IrishHealth.com, 2/26/2004

Places to go, doctors to meet

2005-03-17T18:07:00.000-08:00

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

2005-03-15T21:40:00.000-08:00

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

2005-03-15T08:03:00.000-08:00

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

2005-03-14T22:51:00.000-08:00

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

2005-03-14T10:03:00.000-08:00

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.

2005-03-10T17:56:00.004-08:00

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

2005-03-08T18:32:00.000-08:00

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.

2005-03-08T12:27:00.000-08:00

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

2005-03-03T17:18:00.000-08:00

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.