Love Your Liver

The liver is probably the most under-appreciated organ in the body. You don't realize how much it does until the liver stops working right. Paul's liver disease is odd - the doctors we've seen so far don't know the origins of his liver problems. All the usual causes of liver cirrhosis: viral hepatis, alcoholism, even fatty liver have been ruled out. That leaves a couple of genetic disorders - hemochromatosis (where the liver absorbs too much iron) or Wilson's disease (too much copper). Hemochromatosis and Wilson's are about the only other 'usual' (for lack of a better term) causes. Blood tests don't seem to indicate either of these though. We're waiting on genetic testing for confirmation.

The only thing all the doctors we've seen agree on is that the chemo exacerbated/accelerated whatever process is going on that damaged Paul's liver. So for now Paul's being treated for the symptoms of the disease, not the cause. We hope some of the blood tests provide some definitive answers when we go back to the liver center next week.

When the liver isn't working up to par a person might become jaundiced, fatigued, nauseous, even mentally confused and the list goes on and on. Paul is fatigued and jaundiced. We're both watching for other signs that the liver disease might be progressing. So far it's not, thank goodness! Hope we get some good news next week.

The trough

After chemo treatments patients experience a decline in white blood cells, red blood cells & hemoglobin, and platelets. All of which makes them fatigued and susceptible to infection. It takes anywhere from a day to a week for a patient to reach the nadir and then another couple of days to a week or so to climb back out again. Each treatment is cumulative, hitting the person harder each time. Paul's trough was over two weeks last cycle. The treatment this week was delayed a week to give Paul more recovery time.

Even though Paul's doing Hyper-Cytoxan instead of EPOCH now, so far this cycle seems no different from the first three. Cytoxan by itself can cause all the classic side effects you think of for chemo. He's feeling the fatigue (hard to tell if that's liver or chemo though), aches, nausea, and edema. Compounding this is the medicine he takes to bring his white blood cell count back up and the medicines to prevent infection. They can cause aches and nausea too.

Poison can heal. It's paradoxical that what makes a person feel worse actually makes the person better in the long run. That's our hope.

Waiting, waiting

A great deal of cancer treatment and caretaking is waiting. I wait with Paul before tests, I wait for Paul during tests, I wait for the results. That waiting isn't so hard believe it or not. There's an expectation with that kind of waiting - hopeful I guess or at least an action to it.

The waiting that is difficult is the kind right now. Today Paul will be discharged, but first he needs blood since his hemoglobin is low. We waited for the phlebotomist to come draw blood for type and cross-match. We're waiting on that result now. We'll wait on the blood to come from the blood bank (by the way, did you know cancer patients use 95% of the blood in a blood bank?) and then we'll wait another 6 hours while the blood is transfused. All before we can drive the almost five hours it takes before we get home.

This is my greatest frustration with everything cancer-related. I'm on hold while others take care of things. Having something so personal beyond my influence is difficult. While it is terrible the amount of fatigue Paul experiences, he does have the respite of sleep. I have a few things as well (one of the reasons I began this blog) but nothing fully and satisfactorily fills the time while we're away and waiting.

FYI - Blood banks run very low during the summer. Please donate blood during the summer if you are able! You will make a difference in someone's life and most likely it will be a cancer patient!

Why is this blog called Sundial Station - Lymphoma Log?

Paul and I came to MD Anderson (henceforth mdacc) during Spring Break for a second opinion, definitive diagnosis and treatment plan. We had originally planned for Paul to receive the recommended chemo at a local cancer center with a great oncologist who is a fellow from mdacc. After Paul's liver complications came into being it became apparent his case was too complicated for anyplace except mdacc (or Mayo but we really didn't want to go to Minnesota for treatment).

So where does the sundial station come in? Well mdacc is just this huge hospital. The main building itself covers two city blocks fully. And let me tell you, from 8 in the morning to 5:30 at night this place is packed. There's cancer patients, family and caregivers everywhere! Thousands of people who are directly affected by cancer come to mdacc a week. It's mind boggling and comforting all at the same time. The really interesting thing is that most of these people are outpatient (there only 450+ beds in the inpatient hospital). So to make both navigating the hospital easier and to give people a place to relax between appointments mdacc has several distinctive hospitality areas throughout the hospital. These lounges have distinctive characteristics which makes them excellent landmarks. They have names like The Aquarium, The Gazebo, The Park and The Sundial. During our first week here while descending an escalator from the 3rd floor to the 2nd, Paul noticed a sign reading "The Sundial". Being the Lost fans that we are this immediately made Paul think of a Dharma Initiative station. We had a good laugh and took a picture of the sign. It became something of an inside joke for us. When I was thinking of names for the blog Sundial Station came to mind pretty quickly. And so this fantabulous blog was born.

Toxic beyond belief

Paul's chemo is heavy duty stuff, so much it's EPOCH. EPOCH takes the standard CHOP regimen and kicks it up. The nurses wear special gowns and gloves, plus masks when they hang the IV bags of it. After 3 rounds of chemo the good news is that Paul is in remission! Yay!!

That's the best response we could have hoped for. The big downside is that the scans also found Paul has portal vein thrombosis (PVT) - a blood clot in the vein coming out of the intestines and spleen going into the liver. Why does Paul have PVT? Excellent question! And we don't have a good answer for it. Apparently Paul had a subclinical (like my fancy new medical term?) condition with his liver. The chemo accelerated whatever this disease is and caused Paul to develop full blown liver disease.

Which brings us to now - we're sitting in a patient room at MD Anderson Cancer Center in Houston while Paul gets his 4th round extremely modified chemo. So modified that they've taken out pretty much everything from the regimen except the steroids and a drug called Cytoxan - they call this new regimen Hyper-Cytoxan. We've also had a visit this week at the Liver Center at Baylor College of Medicine. Of course that means more tests and more waiting for answers, and you guessed it! More driving for me!

So this is the new normal

My husband Paul was diagnosed with anaplastic large cell t-cell lymphoma in Feb. 2010. He had been experiencing headaches since Christmas, and after seeing several specialists he finally saw an ENT who decided Paul needed sinus surgery. So it was really the pathologist that diagnosed Paul when the ENT sent in a tissue sample. And so began our new normal - doctor's visits, tests with 15 vials of blood drawn at a time, scans, and week long hospital stays. Did I mention driving? Oh yes, there's lots of driving too!