Thursday, December 29, 2005

Sushi and Silence

Sushi is one of our favorite foods. Sake, Maguro, Unagi, Sabe. You name it, Dalton loves it. Perhaps the only one he doesn't love is Uni (sea urchin), and that is a story for another day. So, on Tuesday night, after a week free from nasuea, chemo mouth, and gagging, Dalton and I took a seat at a sushi bar.

The sushi was actually fabulous, and it went down easier than most anything else Dalton has recently eaten. But that's not what this post is about. You see, after 8 weeks of me running amuk trying to distance myself from the situation so that I could maintain a level head and still keep the baby, the house, the job,and the finances under control, and Dalton sleeping 18 hours a day, throwing up 2, and vegetating the other 4, we find that we have nothing to talk about.

Here it is, our big chance to enjoy the next three weeks before surgery, recovery, and more chemo, and we actually find ourselves often sitting in silence while dining. It's not that we don't have things we could talk about, but they aren't really happy things. I mean, what is it that really steers conversations? For me, it's usually one of four things: what I'm currently doing or working on, what I'm interested in, what's going on in the world around me, and what I'm planning for the future. What have we been doing or working on recently? Cancer. What are we interested in? Getting past cancer. What's going on in the world? How the heck should we know? Cancer? What are we planning for the future? More treatment for the cancer. We talked some about this issue yesterday (over more sushi), and it brought up even tougher ones.

Now that Dalton is feeling better, he is starting to feel the weight of what has happened. Last week, we had Christmas to focus on, but now he finds himself with a lot of time on his hands and very little sense of purpose. That typicaly leads to a lot of thinking. And thinking leads to depression (ok, not always, but in this case it does). The past few days, he has been very blah, even sad. He is afraid now. I don't think he's so much personaly afraid to die. I think he's afraid of going through this hell only to die anyway. What is the point of feeling miserable for six months only to extend your life by the same six months? It would be one thing if chemo were easy for Dalton, but we know better. And, there is something else that scares him, but we haven't been able to talk about it yet. Every time he tries, he gets too choked up and starts to cry. We seem to be in public places every time it comes up, so it keeps getting shelved. Based on the mutual tears that start flowing at that point, several sushi chefs and a smog check technician probably think we are getting divorced.

Even still, Dalton's faith really amazes me. I have always struggled more with faith in the face of adversity than he has, and this is no exception. I asked him if he was angry at God and he said, "No, He's my only hope." While I know that He is my only hope, I'm still angry, and I tell Him that even while I am begging Him to heal my husband. I wonder just how much He thinks I can handle.

Today, I am driving down to Buena Park to visit my Grandpa and hopefully arrange for some full-time nursing aides. In the past few days, his health has rapidly deteriorated. When I talked with the hospice nurse last night, she wondered if Grandpa would make it through the night. Since mom died last year, I have become his primary caregiver and financial support. While it's been tough, my Grandpa has always been very good to me and he deserves more than I can give. Like I told him last night, "The best Grandpa ever." He told me he was tired and wanted to go home to the Lord. And I said, "I understand and I love you. You're the best Grandpa ever."

Even after that conversation, Dalton and I decided to venture out to a birthday dinner for two of our close friends. I think it's important for us to live life now as much as we can. Iain tried his first Indian food - samosas and nan. Dalton was able to be normal guy instead of cancer boy. And I got to laugh. For a couple of hours, life was very normal. I hope I never take normal for granted again.

Thursday, December 22, 2005

Obsessed with Food

Iain is learning how to eat. Dalton is learning how to eat. Ian spits up a lot of the time. Dalton spits up a lot of the time. Iain gags if he takes too big a bite. Dalton gags if he takes too big of a bite. Iain gets skiddish after a bad experience. Dalton gets skiddish after a bad experience.

Welcome to our world!

I could have started this post with a million other good things that have happened this week. Each day, Dalton seems to be better and better. His energy is quickly returning and we have been out and about every day this week. On Saturday, we bought and decorated a tree. On Sunday, we made it to church and actually dined out. On Monday, we ventured down to South Coast Plaza. On Tuesday, we hit the Grove and visited with some friends in the evening. Yesterday, we were planning to do some shopping after lunch at Fatburger, but something went wrong and Dalton got sick, so we didn't make it. Still, we were out of the house, somthing which until last Saturday, had not happended for six weeks.

Everything hinges on how Dalton is handling food, and that still isn't predictable. But, we are working on it.

The last thing that Dr. Iqbal said to Dalton was go home, enjoy the holidays, and get fat. Doctors orders! Of course, that's easier said than done for someone who doesn't know how to eat. But...he's doing great. Monday and Wednesday were bad, but Sunday and Tuesday were great. He's had muffins and donuts and pizza and fettucine alfredo and apple fritters and hamburgers. Some things work and some things don't. There's also this dance we're doing with the medications that encourage things to move along, because if he gets too full, then everything comes back up. It's a tricky balancing act that impacts everything we do. We used to joke about how old people are completely obsessed with their digestve systems and now we ARE those people. Sigh. What's up with that?

Dalton has a pre-op stress test on January 10th. The scans are scheduled for January 11th. We see the surgeon, Dr. Demeester, on the 19th (also Dalton's birthday). Based on those dates, we are guessing that surgery will be sometime the week of the 23rd. Dalton is pretty set on the surgery regardless of what the scans show. If the surgeon will operate, Dalton will be operated on. "Anything else would feel like giving up or chickening out."

The first few days were hard for Dalton after hearing what Dr. Iqbal had to say. Lots of tears and talk of whether this would be the last time he put up a Christmas Tree or took the boys shopping for presents. But now, we are just trying to enjoy each day. We take it slow, but we take it. Here's to four weeks of life without cancer treatment.

Friday, December 16, 2005

Good News, Bad News, No News

The Good News and The Bad News:

Dalton is home.
He is finished with radiation.
He is finished with chemo.
The nausea should resolve in the next couple of days.
His energy should come back as long as he can get some nutrition.
He doesn't have to go back to the doctor until sometime in January.
He will probably feel pretty decent for the holidays.
We finally had a bottom line talk with Dr. Iqbal. (She is going on maternity leave in January and wanted to talk with us before she left)
Dalton's cancer is stage IV.
In most circumstances, stage IV esophageal cancer is not curable. They do not do surgery. The chemo and radiation are palliative.
Because of Dalton's age and health, the team has wanted to be as aggressive and optimistic as possible.
The surgery for this cancer is REALLY tough. No one is the same afterward. It is a massive surgery. As Dr. Iqbal described it, "This isn't colon surgery." (I thought colon surgery was pretty bad)
If the scans show a great response to the treatment, then Dalton should have the surgery.
If the scans don't show a great response, Dr. Iqbal doesn't want Dalton to go through that kind of a procedure.
Dr. Iqbal suspects that the surgeon, Dr. Demeester will suggest surgery regardless of what the scans show.
Dr. Demeester and his team are "very agressive."
If Dalton has the surgery, it will be followed by at least four more months of chemo.
If Dalton doesn't have the surgery, he will have to try a different chemo and simply treat the symptoms.
If he does nothing, statistically he has about six months.

This was not news to me. I had read it online.

It was news to Dalton who up to this point has followed the policy, "Don't ask, don't tell."

Dr. Iqbal says that it's best to stay focused on the positive. Go ahead and ignore the bad stuff. Focus on curing the cancer and living. It is a good defense mechanism. But, don't go through unecessary treatment if it's not going to help.

She has a patient, a young woman who also had stage IV disease. She has had two surgeries, three rounds of chemo, and has been disease free for three years. They think they've cured her. They're hoping the same for Dalton.

For now, his job is to get fat and enjoy these weeks. He has a long road ahead of him and he'll need all the strength he can muster.

Wednesday, December 14, 2005

Clueless Girl Part II

What is wrong with our house? For some reason, Dalton is happier, more jovial, sarcastic, and lighthearted at the HOSPITAL than he is at home. We were talking about it yesterday when I was there and the best we could figure is that the house 1) has too many distractions for me (my mother's obsessive need to organize has begun to manifest itself in me through this process, 2) is one big reminder of how he isn't doing enough to help out at home, and 3) simply gets a bit stifling after 6 weeks of shuffling back and forth from the bedroom to the bathroom to the couch. In that sense, this hospital stay is a bit like a vacation; a room with a view that overlooks the USC quad, room service at every meal, daily maid service, and friends visiting and relaxing together. Sounds like Royal Carribean to me...

Anyway, today's story is a retelling of what Dalton shared with me about what occurred before I arrived. Radiation Oncology is definitely the weak link in the cancer curing trifecta. For those who have been following this story from the beginning, the Radiation Oncology Team includes Neanderthal Man and Clueless Girl. At about 8:30am, Jaime (I think he is the medical assistant for "Rad-On"), came to take Dalton for his treatment. Dalton has 5 iv lines hanging on his portable pole (there is a four bag minimum or they charge a cover), so moving him around can sometimes be a challenge. Of course, my silly husband figured that he'd have the treatment and then come right back upstairs to his room. Instead, Clueless Girl informs him that he has to see Dr. Pagnini today becuase "Today is Tuesday, and you always see the doctor on Tuesdays." I guess that's true if you call "always" once in six weeks, but whatever. Then, not being nearly as talented as Jaime, Clueless Girl manages to tangle his cords up completely in the wheelchair wheels while trying to manuever him into a room. Relaizing her "Oops!", she parks him halfway inside the room facing the wall and says "That's ok, Jaime will fix it when he comes back to get you. Dr. Pagnini should be in in a little while." Then with a flash, she was gone, and my husband was left to fend for himself in the land of abandoned wheelchairs.

What exactly does "should be in" and "a little while" really mean. Quite some time later, Dalton was considering that question when a warm-blooded creature appeared. It was Jaime. Seizing his opportunity, he asked, "Excuse me, but is Dr. Pagnini going to see me today?" Then, a bit more directly he added, "Actually, is he even here?" Jaime thought for a moment and said, "Let me check." And just as he turned the corner, Dalton added "Cause if he's not, I'm going to pak up my tangled cords and walk myself back up to my room."

Eventually, Dr. Pagnini appeared, and he confirmed that Thursday should be Dalton's last day of radiation before they check the scans for surgical candidacy. Then, in a completely imbecile fashion that only a radiation oncologist could master, he added, "But don't worry, if for some reason we have to do more radiation, which would only happen if you weren't a surgical candidate, this time we can go through your esophagus and radiate you more specifically from the inside. That way, it's easier on your heart and lungs!" Isn't that freakin' cool! Not only will you get to see more of us, but we , the loser doctors, will get to stick a tube down your throat. That's right, if you can't have surgery and should statistically die within the year, we can still make sure that your heart and lungs stay healthy and happy! What a dumb ass.

The only other thing of note that happended yesterday is that the dietician and my husband faced off over exactly what and how much nutrition he was getting. After refusing to listen to him and insisting he drink Ensure, Dalton politely asked her to please go get him some so that he could drink it and vomit it back up all over her. That finally convinced her that Ensure was a bad idea, but then she demanded that he tube feed the brown goo for 24 hours a day. Can someone please tell me why complete strangers think they know your body better than you do? After 6 weeks of trying to find a regimen that works, the one thing we know for sure is that too much brown goo = vomit city. Sure enough, immediately after the nurse gave him his afternoon medicine, the vomitting began. It was a bad one, and the nurse, who was clearly bothered and concerned, asked Dalton if he was doing round the clock hour feedings at home. In between wrteches, he told her "No, but the dietician demanded that I do it here." In a fabulous display of compassion, the nurse promptly walked over to the pump and turned it off. Then she waited for Dalton to finish and offered this amazing statement, "Why don't you let me know what works for you and that's what we'll do."

Thank you, nurse. Thank you for listening.

Tuesday, December 13, 2005

December Has Better Doctors

In the middle of the night, in a hopsital bed at USC Norris Comprehensive Cancer Center, Dalton and the chemotherapy agent 5-FU (Flourouracil) began a rocky six-week relationship. Marked by faitigue, nausea, and yes, healing, it appears that this relationship will end in the same way it began - in the middle of the night, in a hopital bed at USC Norris Comprehensive Cancer Center.

This is my not so eloquent way of saying that Dalton is back in the hospital for "at least 3 more days". And when he comes home, he will probably do so minus one chemo fanny pack. This morning's fever and chills are indicative of a blood borne bacterial infection that the docs don't take lightly. So, D is getting two different IV antibiotics while we wait to see what the actual bacteria is that is floating around.

Today's experience was radically different than the first one. Today people were competent. In fact, at one point after he had been admitted and we were up in the room on the third floor, Dalton and I looked at each other and asked, "Are we in the same hospital that we were in six weeks ago?" Every resident, fellow, and attending doctor that came into D's room introduced themselves, explained what they did and who they worked with...they even apologized for having to ask the same questions their colleagues had already asked!

Dalton will be getting radiation while he is there, and his last treatment is scheduled for Thursday. Since that also signals the end of the other treatments, Dalton will probably be chemo/rad free for the holidays. From 12/16 until the first week of January, he will be in recovery mode. Then, he will have the scans that predict the future and hopefully prepare for surgery in the middle of the month. That is the ideal, and that is what we are looking forward to. It's odd to pray for such a gut-wrenching thing (funny, eh) as this surgery, but the word "cure" only comes via two routes - miracles and surgery. We'll take either one.

I have painted three walls tonight and am going to try my hand at some sleep. Cheers to all.

Monday, December 12, 2005

He Bought Himself an Overnight

We're off to USC again. Of course, radiation is part of our daily ritual, but today's visit is going to be a bit longer than normal. Dalton woke up this morning with terrible shakes and chills and a fever of 101.6. The doctors don't like fevers in chemo patients - especially those with permanent open lines to their veins and/or diegestive tracts. So, instead of visiting the folks in radiation, we will be going to the admitting desk. Marie Seitz, Dr. Iqbal's nurse practicioner, is ordering some iv antibiotics and a series of blood cultures to see if there is an infection associated with the tubing. For now, it looks like just an overnight, but I'll keep you posted.

Maybe tonight (if I can't sleep), I'll finish painting the house.

Sunday, December 11, 2005

Whine, Whine, Whine

Don't read it if you don't want to know.

I'm tired.

I'm tired of waking up at 3am and wishing I could lay up next to Dalton without worrying about hurting him or making him feel self-conscious about his tubes. I'm tired of syringes. I'm tired of medicine bottles. I'm tired of brown goo. I'm tired of watching Dalton waste away and feeling powerless to do anything about it. I'm tired of USC. I'm tired of people who work with cancer patients and can't form complete sentences. I'm tired of spit cups and dry heaves. I'm tired of baby bottles and loads of laundry, grocery shopping, and non-stop cleaning. I'm tired of days where my goal is to fill them with so many tasks that I don't think about the reality of the situation. I'm tired of driving to Sav-on and having them know my name. I'm tired of trying to pray and getting stuck after, "God, please heal my husband." I'm tired of radiation. I'm tired of chemo. I'm tired of all work and no play. I'm tired of being thirty years old and feeling like I am seventy.

I miss laughing. I miss thinking about the future. I miss dreaming. I miss date nights. I miss fun. I miss watching Dalton get ready for work and kissing him goodbye. I miss cufflinks and dress socks. I miss getting up on the weekends and asking, "What do you want to do today?" I miss the previously taken-for-granted indecision that always followed the question, "What do you want for dinner?" I miss fresh air and days at parks flying kites. I miss teasing and being teased. I miss sarcasm. I miss passion. I miss being the eternal optimist. I miss looking on the brightside. I miss myself. I miss my husband. I miss life without cancer.

And I'm not even the one with the tumor.

Dont' feel sorry for me. Don't get on my case about the importance of a positive attitude. And don't try to make me understand why this is all happening. Just let me feel it. I promise that when the sun comes up, I'll have the syringes and brown goo ready.

Thursday, December 08, 2005

He's OK

Too long between posts! I guess two weeks was too long, because the phone calls have begun. Thank you to everyone for your love and concern, and please accept my apologies for not having posted sooner. Although I still haven't been sleeping much, my nights have been spent comforting Iain. In the past month, he has been sick three times - an ear infection, the flu, and a stomach virus. All featured high fevers and a very whiny little guy. For the past two nights, he has actually slept quite well, so I finally feel comfortable venturing into blogging territory.

To bring everyone quickly up-to-date, Dalton is still undergoing daily radiation and chemotherapy. Everyone has finally given up on the idea of controlling or even mitigating the nausea and vomitting. We've tried everything (and for those who are about to recommend "alternative" therapies, I do mean everything). Nothing helps.

On the positive side, the docs were so confounded by his ongoing vomitting that they ordered another EGD (a long tube that looks at the esophagus and stomach) "just in case we missed something." While the scope didn't reveal any particualr cause of the nausea, it did give us a bit of a progress report that we wouldn't have otherwise received. It appears that the tumor is responding to the treatment and has shrunk enough that Dalton is able to eat some regular food. A friend of ours was visiting from North Carolina when we got the news, and he exitedly prepared a fabulous meatloaf, homemade mashed potatoes and gravy, and tapioca pudding. Plus, he was able to prepare it in our own kitchen. Yes, the countertops, sink, dishwasher, stove, and hood have all been installed. All that remains are a few cosmetic touches and a couple days worth of painting.

Currently, our walls are about 6 different colors in patches of various sizes and shapes. While I have all the supplies and paint necessary to finish the job, I simply haven't had the time. Our patio is littered with empty boxes and miscellaneous trash left by the contractors and I hope to finish one job before starting the next. If anyone knows of some folks that like to clear out boxes and paint walls, send them my way!

When we last saw Dr. Iqbal, she mentioned that she would be ordering the telltale scans at our next visit, Friday the 16th. I suspect that means that D will have another PET and CT the week of the 19th. Here's hoping for scans that show no active disease! At the least, here's hoping for scans that show no diesase outside the esophageal area. This would make the cancer operable and give us a much better hope for cure.

Finally, I just want to say thanks to everyone who has offered any kind of help - material, practical, social, or spiritual. Thanks to friends visiting from out of town, cooks, drivers, babysitters, comedians, and prayer warriors. Thanks to everyone who has offered to help and hasn't been tapped as well as those who have been tapped out. I don't how how we'd do this without you.