johnny ur

Update July 29th - Preemptive Strike Edition

I'm finally home from the hospital. Let's see how long this lasts. Here's the latest:

They tried to internalize my liver drain, to no avail. I'm stuck with the second bag for the foreseeable future. But at least it's draining and that fluid is not building up in my system which should equal less fevers and less possibility for infection.

I have a nurse coming over in an hour because I have to be on IV antibiotics for the next 7 days. We're going to learn how to do this at home with some cool little ball/pump thing instead of a pole and the whole nine. Unfortunately, I have to live with my port accessed for the next week - just a small inconvenience of a tube sticking out of my chest. Hell, I have two tubes out of my gut anyway, what's one more? :)

Finally, my hair started falling out. Both my head hair and beard hair, so I made the decision to shave it all off before it came out in clumps.

Update July 26th - Losing Hair Edition

I've been back in the hospital since Wednesday. I was suffering from severe dehydration Wednesday morning and came over to CINJ for some fluids. After going home, I immediately felt a fever come on, so we had to go to the emergency room. At the time, I was neutropenic - meaning my white blood count was too low to fight off any infections I might get. Since Wednesday, I've been hanging out in my apartment here on the fourth floor of RW Johnson Hospital, getting IV antibiotics and fluids. I definitely feel better, but I'm still occasionally spiking a fever.

So this presents a dilemma: I'd like to go home, but if I'm going to have another fever and just have to rush back here and sit through the emergency room and all that hassle again, I'd rather stay. At least I have everything I need here for people to take of me. It's really not all that bad (being in the hospital) once you get used to it. The key is making sure you get up and out of bed during the day, and clean yourself and feel a bit normal at times. That makes it bearable. Also my parents and Sarah have been great about bringing me food which has helped me avoid the garbage they serve here. Breakfast isn't so bad, but I'm pretty tired of lunch and dinner.

In other "me" news, I'm developing two outward signs of cancer. I've got the "cancer belly" that my oncologist warned me about, like the malnourished children in the charity commercials. Where's Sally Struthers? This could be a build up of fluid (ascites) or something else. Dr. Moss did not seem too concerned at the time. I'm also starting to lose my hair. When I was doing chemoembolization, I was on a drug called cisplatin. It caused my hair to thin but not completely fall out. On this new round of chemo, I'm on a related drug called carboplatin that is causing the same effect. When I washed my face and hair today, some of the hairs came off in the towel as I was drying myself. I don't know if it will all fall out (Dr. Moss said it might), but I'm going to prepare myself as if it will. I'll probably shave my beard tomorrow. As for my head, I'll wait and see how long I'll be in here before making a decision about shaving it down. 

Take it all in stride.

July 21st - Cooling the Fire Edition

It's Tuesday night and I'm home. A bit unexpectedly I guess. I had surgery yesterday to insert a drain into the right lobe of my liver. Everything went well, no complications, relatively little pain and they sent me home. I'm not going to look a gift horse in the mouth. Here's some more details for those who are curious:

The liver is divided into two lobes, left and right. The liver produces bile which exits through the bile ducts into the common biliary duct (along with stored extra bile from the gallbladder via the cystic duct) and into the small intestine. For some time, I had plastic stents in both the left and right branches of my biliary tree to the left and right lobes of my liver.

The left lobe remains free-flowing with a stent in place, but during my last ERCP, the doctor found the right side blocked up and decided it was better to remove the stent rather than leave it in and contribute to the blockage. No problem for the last 7 weeks. Until Wednesday when the fevers caught up with me and I had to be admitted to the hospital.

This surgery inserted a catheter into my liver's right lobe connecting by tube to a bag on my leg. The stuff that drains is a mixture of bile, liver enzymes and secretions. Kind of looks like dark ale/beer. But this should help my liver work more properly and keep me from suffering random fevers, while avoiding infections.

After having my gall bladder drain inserted, I was in a bad place for a good 5-7 days because any abdominal squeeze (cough, burp, laugh, sneeze) caused a quick sharp pain. I expected the same from this surgery, but I have been very lucky. I can move fairly freely, with only the occasional ache from one of the above-mentioned perpetrators.

What's next? Hopefully, a painless, non-complicated week or two before I return to chemotherapy again.

And my sister will be having a boy come November. Whatever name is chosen, I have committed to calling him Dynamite. Dyn-O-Mite!!

July 17th, The Fire is Hot Updated

One of the doctors convinced me to stay the weekend. He told me all about the risks of sepsis if I were to go home and have an uncontrollable infection versus the prospect of just two days here in the hospital (which I was originally planning on being here anyway). So he won. And I will spend some time reading and contemplating before Monday's procedure.

July 17th, The Fire is Hot Edition

I'm in Robert Wood Johnson's 5th Floor for Oncology waiting to be taken down to Interventional Radiology where I will undergo a procedure to insert a drain into my liver to get the bile out. The left side of my liver is draining fine, but the right side... not so much. I had to come in Wednesday evening because of a fever of 102 and it looks like I'll be here til Tuesday or Wednesday of next week.

At first, we (meaning the doctors, family and I) thought that we would just change the stent in my biliary tree leading to the left half of the liver. It's been about 8 weeks since that was changed and though we hoped to get more usage out of it, were not surprised that I would start running fevers/infections from a clog. Upon further review, the doctors decided to take this slightly more drastic measure - which, if all goes well - will likely work out better in the long run.

In th short run, when the procedures over, I'm gonna hurt like hell. This will be similar to my gall bladder drain, where any coughing, laughing, yawning or heavy use of the abdominal muscles will kick my pain sensors right in the nasties. The drain will be external for the weekend, as a litmus test to see if my liver functions level out and I don't develop any other infections. Hopefully on Monday, they can follow up this procedure with another which will make the drain completely internal. I don't quite understand the anatomy of all that, but right now, I don't have to. I'm not looking forward to the pain, but I would like some more consistent relief from the bloating and fevers and other side effects of an improperly draining liver.

As for my current external gall bladder drain... je ne suis pas. Special Ops looked at it yesterday. It was leaking. They did a dye injection study and saw that it was going nowhere, but have not offered up a solution to fix it. We leak on I guess.

Hopefully I'm out on Tuesday. If not, you know where to find me. I'll be here.

UPDATE: As I was just about to post this entry, one of my doctors walked in with the bad news that there are no anaesthesiologists available today. So not only have I fasted for the last 13 hours for no reason, but I now won't be able to have the procedure until Monday. I think I remember telling myself to "Expect the Unexpected". I definitely did not see this coming. Now I just have to argue with them to discharge me for the weekend, so I don't waste away here. I'm gonna drink a lemonade and yell at some people now. Talk to you later.

Update - July 13th, Back into the Fire Edition

I start a new clinical trial today. It's going to be very intensive this first week in regards to visits to the Institute. I have to be there 4 out of 5 days this week, plus a visit on the other day to Robert Wood Johnson Hospital for an echocardiogram. Depending on my platelet count (let's hope it stays high), I might need platelet transfusions and that could make the visits last quite a few hours.

All in the name of science.

Bring it on, cancer, you SOB.

Update - From one trial to the next edition.

A quick recap: After my last CT scan and ultrasounds, I was taken off the clinical trial I was on. That consisted of gemcitabine (gemzar) and a drug being developed by a Spanish pharmaceutical company called plitidepsin (or apeldine). The bad news is I have grown a new tumor in my liver - a small one, 1-2cm, near the dome, which luckily is not very dangerous health-wise. For this reason, it is considered that the cancer has "outsmarted" the gemcitabine drug.

The good news, however, is that activity in my lymph system has decreased significantly. Hopefully that will continue to happen and we can get the tumors under control as well as I start up on a new trial.

This new trial is for a drug developed by Abbott Labs in Illinois, named ABT-263 - which I assume is just the research name and if it ever gets to market will be called something different. That drug will be offered with "carbo-taxol" (carboplatin/paclitaxel). I have never heard of paclitaxel. Carboplatin is in the same family of drugs as cisplatin and oxaliplatin (platinum-based drugs).

I'm excited to try out a new treatment. I will be the first patient for this trial at CINJ (others will participate at another institution). But I'm also anxious/fearful of new side effects. I handled the previous drugs very well and now I'm a bit spoiled about feeling "pretty good" on most days. But I do this not only for myself, but for every person who has come before me, and those who will come after - - advancing medical science's knowledge of how these things work. They may not save me, but they may help someone else.