Getting used to the sound

of wretching that is.

I'm not sure why I haven't posted in over a week. Perhaps my own fatigue is setting in, or maybe I'm trying to fill my time will all things not cancer. Nevertheless, I have much to report and many stories to tell. If you want the full scoop, from beginning to end, wait until this afternoon and start with Saturday, November 12th. Otherwise, you can get the scoop on what's happening now by reading this post.

Something in this cancer cocktail is causing serious nausea and vomiting. Despite a regimen of Zofran, Compazine, Reglan, and Ativan, Dalton spent all of his time yesterday focusing on how NOT to throw up. It worked only some of the time. Other than the obvious discomfort, this is especially concerning because Dalton refuses to eat through his tube. He's not beligerent or nasty, but then again, I am not nagging. I learned a long time ago that nagging is not only ineffective but brings the kind of hostility that no one wants - especially now. So, I offer to hook up the feedings, he says "Not now", and I say "OK". For the past few days, every time he has tried to eat through the tube, he has gotten so sick that now just the thought of it makes him wretch. Yesterday, he was able to "eat" just one can out of the seven and threw up all of the water and gatorade that he'd been able to swallow. The day before that, he'd managed two cans, but his overnight feeding caused such an attack that some of the brown goo actually made its way out of the small intestine (where it enters) and came back into the stomach in preparation for a dramatic exit.

If this continues, we will end up back in the hospital. Dalton is beginning to sport his dehydrated look again and will lose weight quickly if they can't find a way to get him nourishment.

On a side note, Iain got his first tooth on Friday, sort of explaining why his sleep schedule is so sporadic. After last night, when he woke up at 12:15 and 4:15, I am considering asking my mother-in-law to keep him on Tuesday so I can get a full night's sleep. Oh, and theoretically, the kitchen countertops are scheduled to be installed on Tuesday, the appliances and plumbing on Wednesday. I guess that means if I am feeling up to it, I can prepare a lovely Thanksgiving meal for one and puree up some turkey for the other two. I'm still thinking that one over.

Heads-Up, Seven-Up

Dalton: What are your plans for dinner?
Tricia: I don't know. I hadn't thought about it. Why?
Dalton: You might think its wierd and totally gross, but a sausage pizza sound really good. And a seven-up.
Tricia: I can do that.
Dalton: I mean, I know I won't be able to swallow it, but even just the idea of tasting something other than this medicinal chemo sounds so good...

30 minutes later...

This is the best pizza ever. I swear, it's almost as good as sex. (Spits out the pizza and swallows a large gulp of seven-up)

(Tricia and Dalton wait for the usual spit return of the Seven-Up. Nothing happens.)

IT STAYED DOWN!!! THE LIQUID MADE ITS WAY DOWN THE ESOPHAGUS. THE TUMOR IS SHRINKING!!!

Today was a good day. A tough morning, but a good day.

Our visit to USC started out on the right track when they told us that there was a 10am slot open for radiation instead of the 7:45am slot we had this week. This will mean that Dalton can "eat" from 9am-9pm instead of 6pm-6pm. We can return to normal hours and get a full nights sleep. We won't have to battle with the commuter traffic . And, folks who volunteered to take Dalton to his appointments will actualy be able to do that.

After radiation, Dalton had an appointment with Dr. Iqbal to review his lab results and talk about the side effects - namely the horrific nausea and fatigue. She wrote him a couple more prescriptions and then had a real in your face heart to heart. "You need to shave. You need to get up and get dressed in something other than your jammys. Don't show up here looking like you just rolled out of bed. Set a goal every day and do it - even if its as simple as walking down the block and getting some fresh air. You are young and healthy and you've got a fighting chance to beat this thing but only if you stop acting like a sick person. As much as possible, you need to think and act like a healthy person. I know it's hard and it's easy for me to say, but you've just got to do it. We'll work on the nausea and start some anti-depressants, but you've got to help out with the fatigue. The only way to do that is to move. Hopefully, once the radiation starts to shrink the tumor, you'll be able to swallow some liquids and then eventually real food."

That was at 11am. The seven-up went down at 5pm.

And, the nausea is better. Thank you Dr. Iqbal. Thank you chemo. Thank you radiation. Thank you God. We look forward to complete healing.

One Day At A Time

Two weeks ago, we desperately wanted the treatments to start. Now, we desperately want them to end.

Don't misuderstand. We know that this is the only medical chance for a cure and aren't about to opt out. However, the chemo and radiation are really zapping Dalton, and the feeding tube is a real bummer. Even though he is taking three different anti-nausea meds (including the good stuff, Zofran), he is still suffering from constant, general quesiness. Plus, he is so physically exhausted that he is sleeping about 16 hours each day. In fact, almost the only time he isn't sleeping is when he is giving himself one of the 3 daily syringe feedings or 5 daily medication doses.

I know that some people can maintain a fairly high quality of life while thery are on chemo. And, maybe, if it weren't for this stupid tube, Dalton would be able to as well. Honestly, though, we haven't yet found a way to work the feedings/meds into a workable routine that would allow for any kind of life outside the house. Let me give you an example of a normal day for Dalton:

6am - Wake up, disconnect from overnight feeding, flush tube, push three different meds through tube, get dressed, go to radiation
7:45am - Get radiated
9am - Push two more meds through the tube and connect to 1 hour daytime feeding
10am - Sleep
12pm - Push three more meds through the tube and connect to 1 hour daytime feeding
1pm - Watch some tv
2:30pm - Push three more meds through the tube
3pm - Connect to last 1 hour daytime feeding
6pm - Push five meds through the tube and connect to the twelve hour overnight feeding
10pm - Temporarily disconnect and push two more meds through the tube. Reconnect

This is not a whine, but the truth is that the only way for Dalton to get through this right now is by taking it one day at a time. He is completely depressed, and the thought of doing this for 5-7 more weeks is way too much to handle.

There's not too much more to tell except that I asked for a prescription for a sleeping pill to use on night when Iain stays with Grandma. Since Iain was spending the night there on Monday, I decided to get the RX filled and try to get a good night's sleep. The prescription was for Lunesta and I picked it up without getting the consultation. Later on, I settled into bed and reached over to grab myself a little shut-eye help, only to discover that my prescription wasn't really mine. It was for Tania Hardiq who was apparently battling with a serious bout of Excema. Oh well, even if she's not able to treat the problem, at least she can sleep through it.

Halloween

Just downloaded the photos from Halloween. Thought I'd share this one with everyone.

Going Postal

For those of you who don't know me that well, my first and usually last resort to getting what I need out of difficult situations is to be very sweet and nice and appeal to a person's human sense of decency and understanding. That's not to say that I can't be firm and direct, but I've found that strangers usually respond better to me be humble and appreciate rather than loud and proud. On the other hand, Dalton is much more likely to either raise his voice and get in someone's face or be bitingly sarcastic in order to get what he needs. Perhaps it's the male/female dynamic, but our particular techniques seem to work for us and fail for the other. So, we respect but do not share these approaches.

That is until yesterday...

Were it not for the fact that Dr. Stephen Demeester, a top world renowned surgeon for these types of malignant tumors, is associated with USC Norris Cancer Center, we would have been on way to City of Hope weeks ago. As a whole, USC Norris is the least organized, most innefficient, most patient ignorant, clueless hospital I have ever seen. Keep in mind that I am not speaking from lack of experience. I worked in the medical industry for many years, my mom managed a clinic for 25 years, and during her battle with ovarian cancer, she was a regular patient at two of the other National Cancer Institue centers in SoCal - City of Hope and UCI Chao.

I will spare you the details of most of the incompetence, but suffice it to say that yesterday was a VERY ROUGH DAY. By the time I reached the pharmacy (which by the way is not anywhere near the cancer center), I was at the end of my rope. They were in the the process of giving Dalton his first dose of radiation, the chemo was hitting him very hard, and we still had no anti-nausea medicine. The radiation oncolgist who can't seem to form comlete sentences and only speaks Neanderthal had finally managed to eek out a couple of intelligable phrases implying that the nausea would peak 1-3 hours after the radiation. When I explained that we still had no meds for the nausea he simply answered. "That someone else give you."

I took the sheet of discharge prescriptions and trecked up to the University pharmacy, confirmed that they had insurance and politely, sweetly, and humbly asked if they had the zofran in stock as that was the only one of the meds that I really needed right away. Keep in mind that the radiation is already underway. The cashier looked at the form and said "This is a carbon copy of the prescription. We need the original." I politely showed her on the form where it clearly stated the the white copy stayed with Dalton's medical records and the canary copy (the one we had) went with the patient. She took it over to her supervisor who shook her had and said "They know better than this."

When the cashier uttered the phrase, "Should I send her back up to Norris to get the right form?" I lost it. And I lost it worse than I have ever lost it in public before. I began pounding on the counter and yelling at the top of my lungs, "YOU ARE NOT SENDING ME BACK OVER THERE. THIS IS THE MOST INCOMPETANT PLACE I HAVE EVER BEEN TO. MY HUSBAND IS HAVING HIS RADIATION AS WE SPEAK AND HE IS GOING TO NEED THIS MEDICATION. DAMNIT, SOMEONE FIX IT."

The whole palce turned in unison to look a the nutjob. Some looked scared. Some were chuckling. Most were just shocked. At that point the supervising pharmacist walked over and asked me where the records were and in between sobs I explained that he had ust been discharged, and that his records were still on the third floor of the Norris cancer center. SHe told me that she would call over and get the information she needed, and "Why don't I just take a seat."

Yes I was embarrassed. I was also raging mad. I sat down and waited for about 15 minutes, and then I realized that I need to pick Dalton up from the radiation. I told the supervisor that I would be back in a few minutes and she said it would be ready by then.

Guess what? When I got back, some other clueless unsuspecting cashier told me "Everything is ready but the Zofran. That one needs prior auth from teh doctor for the insurance company to cover it."

"That's the ONLY one I need today." I loundly stated.

At that point, Supervisor Sherrie, scurried over and said, "I have some bad news." I swear, she must have thought I was go postal on her and start shooting. "They won't listen to us, but I've called the doctor and he is talking to them now."

"How much would it cost for me just to buy 2 of the tablets to get Dalton through the night?"

"They are $388.82 each."

I was thinking about it when she said, "Just give me a few minutes and we should have it taken care of."

Fifteen minutes later, we were no closer to a solution.

At that point, Sherrie became superwoman. "I can give you two tablets tonight, but you'll have to come back tomorrow."

That was no problem because we had to be back at 7:45 for the next radiation anyway. I took the tablets, thanked her profusely and headed to the car. Unfortunately, the whole fiasco took so long that Dalton's nausea was already peaking and by the time he got the Zofran on his tongue, he got about 1/2 of it dissolved and proceeded to wretch. He threw up twice more on the way home, no small task for someone whose esophagus is completed blocked by a tumor.

Last night, he was clearly suffering from the effects of all this "treatment", but at least he was home. They came by later in the evening to deliver the food pump and all the associated supplies. I'll write more on that later. We've got to get ready to head up there for his next treatment. Since we're heading toward downtown along with the other 4 million people, we've got to get a move on. Thanks for listenting to me rant. Sometimes postal is the only way to get things done.

Brown Goo

There really is no other way to describe it. Brown goo. For the first time in two weeks, Dalton is actually able to consume some calories and all they can give him is some brown goo. They began the tube feedings on Saturday afternoon and reached the required maximum 70ml/hour by late today. The tube that Dalton uses to eat is really very small, maybe .5cm wide. The plan is for him to "eat" (what does eat really mean, anyway) most of his food in the middle of the the night while he sleeps. Basically, he hooks himself up to a pump and the machine does the rest. It's really quite efficient actually, but not very appetizing. Then during the day at mealtimes he gives himself extra boosts through a very larger syringe. Just imagine the scene on our regular Saturday date night: I'm enjoying a juciy filet with a side of house salad (romaine lettuce, mushrooms, blue cheese, artichoke hearts, and tomatoes in a homemade vinegarette) and he's enjoying a syringe full of Nutrasource. Yum, yum.

Actually, though, I am not complaining. Since Dalton is doing so well with the tube, and his pain from the surgery has decreased significantly, they may actually be able to send him home tomorrow. Of course, that's assuming that they are able to coordinate all of the players since we need to get all of the necessary equipment delivered to our house and figure out how to manage Dalton's increasing nausea. Assuming that happens, then he will be sleeping in his own bed tomorrow.

Iain and I can't wait.

Double Whammy

Surgery at 2pm. Chemo at 10pm. My poor hubby.

The surgery to insert the feeding tube went well and Dalton was back in his room by 4:30pm. They had to isert the tube through the abdomen, so he's got an incision that is about 4 inches long and then another tiny hole wher the tube pokes through. The recovery has been painful, and Dalton has decided that surgery is no fun. Because he was distracted by the pain from the surgery, he didn't even notice the chemo. They gave him anti-nausea and anti-anxiety medicine just before it started and he more or less slept through it. I stayed over on Wednesday night since it had been such a tough day, and I wanted to be there in case he had any reactions to the chemo. One of them will run continuously for the next 8 weeks, but except for two bouts of nausea which were quickly relieved by the meds, so far so good.

Now, we wait for them to start feeding him through the tube and send us home. Throughout the hospital stay, the radiation oncologist has been scanning the tumor and making three-dimensional models of it for our art collection. Not really, but they will help focus the radiation and limit the side effects. That wil probably start on Monday, the same day that Dalton is scheduled to go home. I really hope that they are able to discharge him by then. The house feels empty. Iain and I want him home.

IR Sucks

Since nothing happened yesterday, Dalton and I committed ourselves today to making something happen. By the time I arrived at USC, Dalton had already laid into one of the attending physicians. Because USC is a teaching hospital, there is a constant parade of "Doctors" in and out of his room. I say "Doctors" because I think that most of them are MD's finishing up their residency. The Oncolgy Team is literally about 10 people who walk into patient rooms and act like they know what's going on with your case. Problem is, they haven't been right yet, and they tend to ask stupid questions. One of these "doctors" showed up early this morning and proceeded to tell Dalton, "Well, what we need to do is get a catheter put into the vein in your chest so that we can start chemo, and we need to get a feeding tube in so that we can get you some nutrition." Since we had already heard this about 10 times already, Dalton replied, "I am well aware of what needs to be done. What I don't understand is why it hasn't happened yet. And, if you can't make it happen, then I want to talk to the person who can. The "doctor" defensively remarked, "The surgeon and your primary doctor, Dr. Iqbal are the ones who makes those decisions."

"Then those are the only people I want to talk to."

Dr. Iqbal came by about 9am visibly irritated that nothing had happened yesterday, and she promised us that she would get things moving. Apparently, she went out to the nurses station and began yelling at folks to get on the stick. Bt 11am, we had seen the surgeon, Dr. Lipham, and had confirmed with him and Dr. Iqbal that both the feeding tube and the catheter would be inserted under general anesthetia tomorrow. We resigned ourselves to playing scrabble and reading our way throught the day, grateful that there was a plan and a timeline.

As a side note, doctors are a funny breed. There are those able and willing to make a decision, there are those who like to assert they can make a decision but really can't, and there are the nodders who simply agree with whatever someone else said. The only ones worth having are the first type. So, when the "Team" showed up and proceed to tell us that they were working on getting the cather and the feeding tube in (blah, blah, blah), we just ignored them. However, when one of the junior helper guys chimed in with the brilliant question, "So, you're still not able to swallow, YET?" I actually laughed in his face. Is the tumor just going to magically start shrinking? If he could swallow, Dalton wouldn't be in this place. He'd be at home eating steak and potatoes and having a glass of wine. What an idiot! In retrospect, I think he was a student trying to impress the head doctor and I clearly crushed his ego. Oh well, time to toughten up junior. Timid doctors are useless.

Surgeons are our favorites. I guess because they actually have to cut somebody open and really dig into their job (ha, ha), they tend to be very confident. That is great for patients because 1) you feel like they are in the know and 2) you feel like they actually have control. Go surgeons. When I grow up I want to be just like them.

Had things gone as planned, today would have been a great day. Instead, Bubba the transport guy showed up at four o'clock, threw open the door to Dalton's room and accusingly asked, "Do you have your chart?"
"Uhh, no, but who are you?"
"I'm taking you down to angio."
"To where? And why?"
"I don't know, they just give me orders."
"Well, find someone who does know."
Just then, Dalton's nurse scurried by and said, "They just called from IR and want you down there stat. I'll have to run the IV on the way down."
"HOLD ON A MINUTE! What is IR and why are they taking me there."
"I guess they were able to squeeze you in last minute and they want you down there now so they can put in the cathter."

In retrospect, we should have stopped this nonsense then and there, but we felt helpless and didn't know what to do, so Dalton grudingly got into the wheelchair and wen't down to IR, which by the way is Interventional Radiology. The folks at IR were clearly in a hurry and they didn't give him nearly enough pain medicine, so he was screaming during the procedure and remembers everthing about them cutting the 1/2 inch incision and shoving the tube under the skin, through the vein, and four inches down the chest wall to it's exit point. By the time I saw him, he was in so much pain that he wouldn't even look at me. The kicker is that Dr. Iqbal showed up about 1/2 hour later and brightly asked, "How are you doing?" Turns out, she had no idea that IR had done this and was still under the impression that it was happening tomorrow at the same time the feeding tube went in. She apologized profusely, and told us that if that ever happens again, we should ask for the nurse to page her. Good to know. Hope she doesn't mind a lot of pages.