Friday, April 28, 2006

Hurry Up and Wait

An update in two parts:

On Tuesday the 4th, Dalton spent the day at the radiation oncologist having scans, simulations, and ultimately treatment. What normally takes about a week was accomplished in a day. As a result, Dalton was able to have chemo on the 7th. The docs remained unsuccessful at removing some of the fluid from his abdomen, so he continued to suffer with a lot of pain, but at least it seemed like we were on the right track.

On Saturday the 15th, we celebrated Iain's first birthday. Believe it or not, Dalton was out there BBQ-ing dodger dogs and eating nachos. I can remember a time when that would have been commonplace, but under the circumstances, it was extraordinary. We spent the next two days recovering, but it was well worth it.

CRAP both literally and figuratively. For the past week, Dalton has been enjoying the fabulous incompetence that accompanies a stay at USC Norris Hospital. To be fair, I've some to the conclusion that all hospitals practice the art of incompetence, but it seems to be especially evident whenever Dalton gets trapped at Norris.

I arrived home last Wednesday the 19th to find Dalton unable to move or talk. When he finally felt able to tell me what was going on, he said that he was in excruciating pain and that his abdomen felt as though it was going to explode. Since he didn't want to move, he insisted on waiting until Thursday to go to the doctor. They did an x-ray and proclaimed that he was full of crap all the way up and they began the process of getting rid of it.

Many unspeakable things later, nothing had happened and Dalton felt no better. Yet, somehow, they claimed the new x-ray showed that he was all cleaned out. At the docs urging and cajoling, Dalton agreed to another CT scan. Reluctantly, he drank 32 oz of Barium (horrible when you are ok, unbearable when you all bloated and distended beyond recognition) only to learn that the nurse had sent the CT tech home and he would have to wait till tomorrow and do it all over again. At that point, we agreed that it was time to go home. Dalton put on his pants and I told the doctor that we would be checking ourselves out. Amazingly, they managed to locate the tech and Dalton's CT was performed without him having to endure more barium. Here is what they found:

There was no crap in his bowel. There was cancer all around it. The tumor(s) had grown like a web in between the outer part of the bowel essentially trapping the bowel and all that extra ascites (fluid that is a cancer cell waste product), making it impossible for the bowel to contract and move food and crap along. This not only stopped things from moving along, but caused great pain. They had to find a way to get things moving again and fast. Thankfully, they were finally able to suck out some of the fluid allowing enough room in Dalton's belly for the intestines to work again. Once that happened, he was able to start eating again and they let him go home.

While he was there, they started the second dose of chemo. At the same time, the oncologist expressed some concern that it may not be working very well based on what he saw on the CT. It sounds like they will do another CT in a couple of weeks, and if things don't look better, we'll be switching chemos.

All of this brings us up to date medically. Emotionally and physically we are wearing down. Cancer is funny because it is like trying to outrun a train. It takes a while for the train to get moving and for a bit, you can stay ahead of it. Then, it seems like all of the sudden it has momentum on its side, it passes you, and no matter how desperately you try, you can't seem to catch it. I think that's how we feel right how - desperate to catch an accelerating train. Physically, Dalton can feel and see his body being overtaken. I can see it as well. Even though the cancer is inside, it leaves outward calling cards of what it is doing. Bony shoulders and arms, bloated belly, persistent violent cough, difficulty communicating (probably from the increasing pain meds), and a limp caused by the numbness in his right leg. I feel like I need to be home all the time or he forgets to eat, forgets to drink, forgets to walk, forgets his medicine. I've started to do my grocery shopping online, and that's helps a bit, but it's hard to cook and clean and exercise and do laundry and take care of myself. Laugh if you must, but my eyebrows really need a wax! So many people have offered to help, but what could I have them do? Dalton will accept the help from me, but with others, it's a reminder of exactly how bad off he is. There are a million little things that need to be done (going to the bank, paying bills, picking up prescriptions, getting to the dry cleaners, and filling out disability forms), but none seem big enough to ask for help. I suppose it's the aggregate that is so overwhelming.

Anyways, it's time for me to get back to work. Thanks for reading. If you made it this far, you are a real trooper.

Keep praying for a miracle.

Saturday, April 01, 2006


If you want to know what's been going on these past few weeks, read the post below called "Recovery. When?" before you continue.

I hate CT scans. I hate cancer centers. I hate oncologists. I hate waiting rooms. I hate rain. I hate retching. I hate pain. I hate cancer.

For those who have "admired my strength and faith", this is not the post for you.

There is cancer everywhere.

Well, not everywhere. The CT scan only included the chest, abdomen, and pelvis. But 3 for 3 might as well be everywhere. The official word from the oncologist was "Your CT is not looking very good." This was his gentle way of easing into the fact that there are cancer deposits throughout the abdomen, spots on the lungs, infected nodes in the pelvis, and tumor on the spine." F?*%!

Indeed, something wasn't right. The leg pain is being caused by the spinal mets (cancer lingo for metastasis). The bloating and nausea are being cause by the 1-2 liters of malignant fluid inside Dalton's abdomen. The lack of appetite...well that's just what cancer does.

They're going to radiate the spinal tumor in order to shrink it and alleviate some of the pain. There is also a fear that it could cause the bone to be severely brittle and break. Broken backs are never a good thing, so the tumor has got to go.

Unfortunately, it sounds like they won't do any more chemo until that part has been sufficiently radiated. We don't know why since they had no problem pummeling him with it all at once last fall. Maybe we'll ask again next week. In the meantime, I find myself trying to banish images of the cancer growing and growing and growing inside of Dalton while we wait. Don't they understand it's trying to kill him? And, it's winning?

They tried to go in with a needle late this afternoon and draw out some of the fluid from his abdomen so that he would be more comfortable, but his intestines wouldn't cooperate and kept blocking the entry path. They did however reschedule the procedure for next Thursday and write him a prescription for some much heavier duty pain meds. They also gave him some steroids to reduce the swelling in the spine. We're trying not to focus too much on how often they're using the word comfortable.

To be fair, the doctor said (and I quote). "This does not mean that we are throwing up our hands and giving up. There is still much more we can do." However, until we start doing something, there is this sense that there is a very nasty and aggressive tumor trying take over Dalton's body.

We talked tonight about fear and death. Hopefully, we won't continue to live in that place. We cried about Iain and little Dalton and our own potential loss. Faith was hard to muster today. Heaven is a place for old people to go after they've Seen their kids grow up. Not really, I know. But it seems like that's how it should be.

The cancer treadmill has begun once again and someone set the speed at turbo without even a warm up. We have appointments next week every day but Monday, and I promise to be more consistent in my writings. It shouldn't be too hard. I really can't sleep.

Recovery? When?

These past six weeks have been really tough. At least that's what I thought until today. For the first two weeks after we got home, Dalton was only allowed to eat and drink clear liquids. Then, when they finally released him and said "eat whatever you'd like", he had a horrible time with what they call dumping syndrome. Basically, the food dumps too quickly into the small intestine and causes dizziness, weakness, sweating, nausea and cramping. He became very reluctant to eat and we spent a lot of our time trying to figure out what was safe. Things seemed weird in that region, but heck, he'd had his insides rearranged. What did we expect?

We met with Dr. Demeester (surgeon) about two and a half weeks ago and discussed Dalton's lack of appetite and occasional morning nausea. In order to stimulate Dalton's appetite, he suggested Dalton stop feeding through the j-tube (a small tube inserted into the small intestine that helps supplement real food until patients can maintain there weight). We know it wasn't related, but after that, everything went to hell in a handbasket.

Suddenly, the vomiting seemed to worsen a bit every day. Dalton developed this strange and severe leg pain that shot down the back of his leg to his calf, and last Wednesday when I went to change his dressing, I noticed that his belly was big, round, and hard. Forgive the analogy, but he hadn't taken any food for over a week (nothing sounded good and he was throwing up anyway), so he looked like the children in Africa who are starving. I freaked out and called the doctor and they said to come right in. Dalton freaked out and said "no way in hell am I going in there. I don't want them to stick me in the hospital again. We'll wait until next week's CT scan and bring it up them."

So, we waited. And we played the guessing game of "How can we make Dalton feel better today?" Eenie meenie minie moe, which anti-nausea pill that won't work would you like to try today? Or, how many dulcolax can you take at one time and still not make any progress (on the bloating that is). Or, how many days can you go without food or water before you need iv hydration?

All along, we were getting scared. Something wasn't right. He wasn't getting better. The pain was getting worse. Something wasn't right.