johnny ur

Update - March 19th Port Edition

It's about time I update again, lest everyone worries that I've disappeared. Frankly for the past two weeks, I wish I could have disappeared. I was feeling, as could best be described by a 4 year old as, "yucky". Truthfully, all I wanted to do was sleep. It was the only time that I felt good.

The fatigue that comes with chemotherapy drugs - whether through systemic chemo or chemoembolization, like what I had - is absolutely the worst side effect. No amount of sleep can restore you. No amount of food can bring you energy. For a day or two, this isn't a big deal. So you're tired? Who cares right? We've all been run down for a few days - not felt like doing anything. But when that fatigue starts stretching into week two, it starts messing with your head, let me tell you.

Without dwelling too much on depression and all that entails (I mentioned it a bit in the past), let's just say I am pleased to have turned the corner and be on the sunnier side of the street. As luck would have it, the first day I would have any decent amount of energy was this past Tuesday, St. Patrick's Day, my 30th birthday. I was lucky to have a couple friends come over and share some pizza, desserts and fart jokes. Doesn't get much better than that right?

Back to the medical info (which I always like to post in detail for random people searching the web for experiences):
I saw Dr. Rueda-Lara at the Cancer Institute of NJ (Psychiatrist). I find that she is a wonderful person to talk to and she's great at trying to work out the right drugs to help me feel better. Last month she put me on Lexapro which is an anti-depressant. Lexapro takes about a month to kick in, so I should be feeling that at some time in the near future. Most recently she prescribed Provigil which is a drug sometimes prescribed to those with narcolepsy or sleep apnea to give them energy and occasionally helps with appetite stimulation. I'm not quite sure how well it's working (or if) as my internal energy is quite screwy right now. I'm not sleeping well despite Ambien (for sleep) and Atavan (for anxiety) but I have much more energy than the previous two weeks. Jury is still out on Provigil.

Tomorrow, I go for a quick procedure to install a port under the skin on my chest. Though I'm actually a bit nervous about the procedure (unfoundedly so - but I get nervous anytime my veins and arteries are messed with), I'm looking forward to having the piece so drawing blood and starting IVs will be easier than going through my arm. This is also a bit of a necessity for my systemic chemotherapy... which leads me to...

I'll probably be starting systemic chemo very soon (within the next few weeks). Next week, I'm making a quick trip to Baltimore to meet with Dr. Geschwind to review how things have gone with the chemoembolization. But unfortunately, my cancer is not localized to my liver. It has metastisized to my lymph nodes which means it's in my lymph system and thus cancer cells could be anywhere in my body. This will be done at the Cancer Institute of NJ (which is associated with Robert Wood Johnson Hospital). Though I'm not looking forward to it all, I know this is just another step I have to take to try to get healthy again.

Other than that, the excitement in my life rests in March Madness. Sarah is not very happy about this. Oh well.

Update - March 6th, Second chemoembolization treatment

The second treatment has been a bit rougher than the first. My first treatment left me with alot of fatigue and some low grade fevers but not many other symptoms. This time, nausea, headaches, stomachaches and fatigue along with the fevers have caused a loss of appetite. Thank goodness for oxycodone. Every day is a little better so hopefully tomorrow is better than today. On that note, time for drugs and bed and a shot at another day.

Update - March 1st

Just when I start to feel close to normal after my gallbladder drain operation, it starts to snow. Oh, and I have to go back to Baltimore for my second chemoembolization treatment. Mom and I will take the train down tomorrow - I have an MRI scheduled at 5:30PM - and then on Tuesday, my treatment is scheduled for early in the morning. I'll stay overnight and head back home on Wednesday. Hopefully, the snow will clear for the ride back.

Update - Sunday February 22nd, Drained Edition

I'm moving much slower today, two days after having an external drain placed into my gallbladder leading to a bag strapped to my leg. The Amazing Adventures of BagMan!! have begun. I've long dreaded the day I'd have to wear an external bag to drain my internal fluids. I've had ulcerative colitis since 1996 and the possibility always existed that someday my large intestine would have to be removed and I might have to wear a pouch to collect fluids. But truth be told, it's really not as bad as I expected it would be... yet. It's only been two days. Talk to me in a month. And by then, we might be able to remove it, since this is not a permanent solution.

But I'm getting ahead of myself... Let's back up one week.

While trying to relax in Florida, I woke one night with sharp pains in my right abdomen - the region of the gallbladder and liver for those not keeping score - and went to the hospital the next day. One CT scan later, they told me I have an inflamed gallbladder (geniuses, these doctors, I'll tell you). That's unfair, I guess - if I was going to be there permanently, they'd probably do something to help me. But since I was scheduled for the a flight back to NJ the next day, they just gave me some percosets and wished me luck getting on the plane and getting home.

Fast forward to a few days ago and Dr. Ben-Menachem scheduled me for another ERCP procedure in conjunction with an Interventional Radiologist who would drain my gallbladder externally and then hopefully lead Dr. Ben-Menachem's stent through the cystic duct. Unfortunately, the cystic duct is still too occluded and according to Dr. Ben-Menachem, there was way too much "junk" in the gallbladder which was causing all the pain - stuff that would have easily have caused a serious infection had it gone untreated.

So now, pain from the gallbladder is gone. Temporary pain has taken its place at the site of the incision. I feel inhibited from using my abdominal muscles as any quick contraction (coughing, laughing, squeezing) causes a sharp pain. This should relent in a few days (with the help of the percosets) and life will return somewhat back to normal (sans showers which are now off-limits to avoid getting my incision dressing wet).

Future? Not sure. Gallbladder could be removed (many complications associated with that right now). A stent in the cystic duct is a possibility if chemo helps shrink the tumor cells around it. For the time being, I'm learning to live with this bag and trying to cope with my girlfriend going away for a few weeks to visit her friends and family - leaving me completely high and dry as far as taking care of myself. The nerve of some people, right? Eh, I'll just take some more percosets.

RPLCE my ERCP, PLSE

Ok, I lied. I don't have an ERCP. ERCP is a name of a procedure which stands for Erase Records Control Protocol. It's a secret government program to brainwash all of it's citizens. OK, that's not true either. ERCP really stands for Endoscopic Retrograde Cholangiopancreatography which might as well mean brainwashing for all I know. OK, that's strike 3. Endoscopic in my layman's terms is sticking a videoscope down through the mouth and the Cholangiopancreatography means the doc is going to look at the bile ducts (cholangio-) and/or the pancreas. I don't know why the word Retrograde is in there - personally, I'd feel better if they went Professional Grade or something like that. But what's done is done.

So the first time I had an ERCP was back on Christmas Eve to place a stent in the cystic duct to drain my gallbladder. Though leaving me with a slightly irritated throat, it was relatively painless and relieved the majority of my discomfort. 6 weeks after that first procedure, I needed to get the stent replaced. Since it is a plastic and not metal stent, it is slightly weaker but more easily removed.

I was knocked out by the Happy Juice on Thursday morning and when I woke the doctor had both good and bad news for me. The bad news was that he could not replace the stent, he could only remove it because the cystic duct has become completely occluded (closed off) from cancer cells - which he was quick to note, could be living or dead.

This is not a horrible thing. First, the body can survive without the gall bladder which serves as a reservoir for extra bile produced by the liver. The gall bladder can also live on without pushing bile through the cystic duct. Second, because the duct i closed off, nothing can enter nor escape so theoretically, it should not swell anymore. If it does, there are other drainage options available to me before it needs to be removed. We'll wait and see how things develop.

Doc (Dr. Tamir Ben-Menachem) was able to put a stent into my bile duct that leads into the liver which in many ways is more important because I was showing the very beginning stages of jaundice - slight yellowing of the eyes, a bit of itching in my feet. Too much of that would lead to poisoning of my blood because of bile back up. So, all in all, not a bad trade off.

However, the procedure may have left me with a bit of an infection. They gave me an antibiotic to fight it off but I was still running a fever over the past few days. Luckily they upped the dosage and it's been under control mostly, not rising over 101 - which would have triggered a return trip to the hospital for IV antibiotics.

I'm hoping that everything remains under control for the next few days. I'm going to escape the winter blues on Wednesday for a few days with a trip to see my aunt and uncle in sunny Florida. I'm sure sun and fresh air will be great for my health and morale. Even today's 50 degree weather was a welcome respite. Keep it coming, sun, keep it coming.

Update Feb 1

The past 3 days have been a complete turnaround from Tuesday and Wednesday's hole of depression. A friend of ours has a hot tub that they allowed me to use. On Thursday, I went and sat in the hot water and it felt ok, but my body and mind were so battered and tired - I really only enjoyed it superficially. The very next day, we went back and something in me snapped me around and I was able to smile at the blue skies and the sunshine - things that I physically was unable to do the day before.

Over the weekend, I had friends visiting and although if asked, I would have said I was too tired to see them, when they were actually there it was like a shot of rejuvenating energy. It was very helpful. As I do every night, I hope the trend continues upward and every day is better than the previous.

Now, if someone could just tell the sun that we're done with winter here and we need some heat...

Also, Bruce Springsteen rocked the Super Bowl. Anyone who disagrees is no longer my friend. Seriously.

Update Friday January 30th

It's been a few days since an update with good reason. The past days have been really tough to get through emotionally. I'll get to that all in a moment, let me deal with the trivial physical stuff first:

I'm still having a bit of trouble sleeping without getting night sweats. For instance, this morning I woke at 5AM soaked in sweat and just sat in a hot tub of water for 30-45 minutes, almost falling asleep. My appetite has been good. I'm going to need it. I'm down to 140lbs. This is not good.

All of this may have been affecting my emotions recently. On Tuesday, Sarah and I went for a walk around the block - the first time I'd done any physical activity outside of the house in quite some time. But rather than make me feel better, it actually struck somewhere inside of me to really upset me. My body, which led me up Africa's highest mountain one year ago, was now havig difficulty getting around the block. I broke.

And I broke. And I broke. And I couldn't control myself anymore. I was so tired - possibly from lack of a good night's sleep, maybe from malnutrition - but I couldn't stop myself from crying. I had never experienced anything like this before. And it continued on for the next day too - my body didn't want to move, I wouldn't say that I wanted to die, but I definitely didn't have anything inside to help me fight against it and this scared me.

All of my life, I had been the type of person who could deal with stress head on - putting things into perspective and finding some inner strength to get me through. Here I was feeling hopeless because I would sit on the couch and while not feeling particularly bad about anything at in particular, I would just cry. And I couldn't stop it.

If I was this weak now, how could I ever hope to be strong enough when this disease got tough?

I've been able to get out of this pothole for the time being with the help of some of my mom's Xanax, some sleep and lots of calls and emails from friends who have been super-supportive. But I have a new understanding of people who go through depression and need medication to help them. I never understood why, until now.

Update January 23

Just wanted to let everyone know how my two days after chemoembolization have gone. Yesterday, which was my first full day home from Hopkins after the procedure, was a loss of a day. I was extremely tired - seemingly sleeping two hours for every hour that I was awake. My appetite was low and I was basically in a cloud for most of the day. In the evening, I developed some low grade fever 101 F. But this was after feeling cold for most of the day.

Today has been much easier on the fatigue and appetite front, in the sense, that I had more of an appetite today - almost back to normal - and my fatigue was much lower. However, the annoyance today has been my body temperature. Although the thermometer is reading 98.6 - 99, every 30 secs to two minutes, I've had to deal with chills or sweats. Take my sweater off, put it back on. This has been tiring... I haven't been able to find a comfortable position to rest in all day. But if this is the worst of it all (more an annoyance than anything else), I'll be happy if my recovery continues so rapidly.

I did not take any pain medication today. Just one anti-nausea med in the morning (more for prevention than nausea), and my antibiotic. Hopefully, things are looking up, and looking up quickly. 

Update Jan 22

Thanks for all the well wishes. I know everyone has been concerned about how the chemoembolization (CE) went on Tuesday. By all accounts, it went well. Right now, I'm hopped up on pain and nausea pills so I'll post something more substantial in a few days when I can get my head out of the clouds.

Sunday Observation

I spent Christmas in Minnesota, getting a stent placed in my gall bladder. I will spend Inauguration Tuesday (arguably more important than Christmas) in Baltimore receiving chemoembolization. I wonder where I get to be for my 30th birthday on St. Patrick's Day?