Kevin's Dead Cat

After surgery sliced off an entire tumor and 1/3 of my tongue, plus six weeks of radiation therapy, I've been re-learning how to eat, drink, and talk with my newly re-constructed tongue and coping with side effects. But the cancer came back and I don't know what's going to happen next.

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Location: Los Angeles, California, United States

I don't want life to imitate art. I want life to be art.

Tuesday, May 31, 2005

Nostalgia and Amnesia

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.

Sunday, May 29, 2005

Mood Rollercoaster

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.

Friday, May 27, 2005

Running out of electrical outlets

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.

Wednesday, May 25, 2005

Chemo Follow-Up

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.

Tuesday, May 24, 2005

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

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?

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.

Sunday, May 22, 2005

Home

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.

Friday, May 20, 2005

Visitors

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

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

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.

Thursday, May 19, 2005

Surgery is over

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

Wednesday, May 18, 2005

Tracheostomy, again

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

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.

Tuesday, May 17, 2005

Another lovely night ruined by sleep

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

Monday, May 16, 2005

The ADD Meal Plan

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.

Saturday, May 14, 2005

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

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.

Friday, May 13, 2005

Planning for the end

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.

Thursday, May 12, 2005

Waiting to Inhale

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

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.

Wednesday, May 11, 2005

Chemo

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.

Tuesday, May 10, 2005

Morphine's back on the menu

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.

Monday, May 09, 2005

Mrs. Adams

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.

Saturday, May 07, 2005

Last words before the plunge

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.

Tuesday, May 03, 2005

Machine Shop

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.

Monday, May 02, 2005

Keeping it together

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.

Sunday, May 01, 2005

Overwhelmed

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.