Feeding tube, again

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

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

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

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

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

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

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...

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

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

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

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

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?

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

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

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

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

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.