johnny ur

Random Things that Suck about Cancer

• Losing your hair. And then growing it back in places that previously did not grow - my moustache.
• Malfunctioning tastebuds.
• Difficulty swallowing.
• An empty sinus cavity: Whenever I breathe or talk, I hear my voice and breath amplified about 10x. You know when you are on a plane and the pressure changes, often, I'll hold my nose shut and blow air out to relieve the pressure. After that release, there remains an echo sound for a few seconds. This is what I have all day.
• Difficulty belching. Doesn't sound like a "problem", but I don't have the abdominal strength to force the gas out. This is quite annoying.
• Losing muscle mass and fat.

There's plenty more. But that's enough.

Update - September 22nd

    My weight is down and so is my appetite. It is so difficult to force food into your mouth when your mouth is not producing saliva. Chewing on bread becomes a chore - bite, chew, sip some water to wash it down. I seem to be a bit dehydrated. Besides my dry mouth, my eyes are not producing tears very easily. They are dried out and uncomfortable when I try to keep them open. Even excessive blinking does not bring about relief. I've been using TheraTears eye drops with little success. These symptoms and conditions could be because my sodium levels are low. I've been trying to down Gatorade and Pedialyte as much as possible to restore my sodium and electrolyte levels to normal.

I was hoping that I would be well on my way to a healthy, stable weight by now. It's 2-3 weeks since I was discharged from the hospital. Yet, still I have to fight - to force down food, to swallow pills, to deal with constant, nagging pain. Instead of healing, I feel my body deteriorating. Logically, I know this is what is going to happen. Emotionally, I have to deny this. I need to remain positive and I need to put all of my effort into making my body stronger. 

I mentioned awhile back that I am now on hospice care. This means that most of the services I received from Dr. Moss at CINJ can now be taken care of at home. My nurse helps me with my pain management and solving any other symptoms that may come up. I also got an awesome, adjustable hospital bed. I've wanted one of these for a long time. If I do begin to recover, I can come off of hospice again and return to CINJ for treatments. It's hard for me to see that happening from the shape I'm in right now (very skinny and weak) but stranger things have happened. I have a great support team pushing me in that direction. My doctors and nurses are constantly looking at ways to make me feel better and stronger. My girlfriend and mother are fearless about forcing fluids, foods and love down my throat even though I'd much rather follow my body's natural signals, however harmful they might be for me.

So, to clarify, hospice care does not mean I'm on my death bed. Currently, I am weak physically (and probably emotionally too) but I am going to fight. Your support means alot to me.

Update: As Close to Lucid as I Can Get

So there is about a 5% chance that I could write an update that would make sense chronologically. So I'm going to attempt to write one anatomically - starting at the head and going down to the toes.

- Head: A bit tired and an occasional headache. Nothing to overly complain about except for the hair loss which has not come back yet.

- Face: When I first started growing facial hair, my moustache was the last thing to come in... Now it's coming in quick and full and I'm wondering if I should develop my Tom Selleck, Private Investigator-look? I've also noticed that my eyebrows and eyelashes have begun to thin. My face looks very gaunt from the weight I've lost. And my ears are a bit funky. It seems like my ear canal is hollowed out (the opposite feeling of having it clogged like when you're going to a higher or lowered altitude and need to hold your nose and blow out.

-Mouth: BAD case of dry mouth. This can be chalked up to any of the drugs that I'm taking right now. I'll get into my drugs later. But I am taking a prescription mouthwash, called Nystatin, to combat a bout of thrush in my mouth and throat. This has helped a bit with my dry mouth. And I continuously, accidentally bite the insides of my cheeks. I usually curse myself after doing that.

-Back: Not bad. Can be a little sore after sleeping in one spot the entire night (which is usually NOT the case). My sleeping pattern is unpredictable. We'll talk about that later too.

-Exterior Torso: Itchy. I have 3 insertions to my torso.
    a. My port is inserted under the skin on my right chest. This is used for IV infusions instead of having to stick my arm with a needle. A god-send for those of us who have a need for it.
    b. A drain catheter into my gall bladder. My gall bladder is technically not functioning now. This is not serious. You can live without a gall bladder. Surgery to remove my gall bladder would be too risky, possibly spreading cancer cells or perforating something internally, which could lead to dangerous infections. Right now, the tube leads to a plastic bag that straps to my leg. The bag collects the liquid that comes out of my gall bladder which is solely natural secretions and mucosa. The inconvenience that this drain causes is fairly large. It often leaks out from the sides of the gauze dressing that we tape down to hold the gauze and protect my clothes from the liquid. I have to change the bandages every time they get wet - which is too often for my patience.
    c. A drain catheter into my liver. I think I've wrote about this extensively in previous posts, so I'll try to keep this simple. This drain, though not leaking as much, does put out a really gross mix of bile and mucous that I'm sure fascinates people that are fascinated by that sort of thing. The flow through that drain is much greater than the one through the gall bladder.
Everytime we change the dressing on the drains, we need to replace the tape used to keep it in place, which causes my skin to become raw and then, itchy. Kind of like having a cast.
    d. My "innie" belly button has turned itself to an "outie". It's kind of sensitive to pressure now.
    e. Interior Torso: This has been the biggest discomfort from the beginning. Currently, I am very bloated - my abdomen muscle is stretched pretty tightly. This makes it very sensitive to anything that causes pressure. I swallowed some juice down the wrong pipe today. Ugh, agony! Coughing. Randomly, pain will  appear around the entry sites of the drains,  or in my lower back, or in some other random spot.
    f. I'm working on healing my urinal tract infection. I was having trouble urinating so Dr. Moss introduced an antibiotic for 5 days (Levaquin) and I'm sucking down cranberry juice as frequently as I can. It's helped in just two days. I feel better already.
    g. Legs and Feet. Besides my muscles being atrophied from a lack of a proper exercise routine, my legs don't hurt.Nor do my feet.  

OK - now for the drugs.
- Lialda for my ulcerative colitis.

- Ursodiol - to help in the production of bile acids.

-Senna - to avoid constipation.

- Lexapro - an anti-depressant.

- Ritalin - Helps to combat fatigue in the morning and early afternoon.

- Oxycontin - For long-lasting ("extended") pain relief.

-Levaquin (reviously mentioned... for the suspected UTI.

- Marinol - This drug contains the compound, THC, the active element in marijuana. This pill was presribed to help my appetite. It does not cause me to get high. The one downfall of Marinol is it causes dry mouth, which I'm fighting against anyway.

Mirtazapine - This drug is also an anti-depressant with the benefit making me a bit drowsy and helping me to sleep.

Lovenox - This is my daily  blood thinner, injected like insulin for those with diabetes.

I'm losing the battle to stay awake. I might have to write more tomorrow. Let me know what you want to hear about.

-

Another Quick Stop into the Hospital

Luckily this was only Thursday until Friday. Hopefully my head will clear for a decent post.
Quick shots: Signed up for Hospice care. (which does not mean I am on my death bed.)
I have a pain pump which allows me to choose when I get a release into my system of dilaudin. My pain is gradually getting better. And congratulations to recent new parents: especially, Rocco and Michelle. Happy Birthdays all around. I'm lazy at sending, writing and or calling this stuff. So there you go. I still love you Ricki. :)

Update - Tuesday September 8th

I would love to give you a full and complete update. But I am hopped up on painkillers (dilaudid) that have me a bit loopy. I start typing a sentence and then start drifting off to sleep. I've spilled a few drinks on me already. So I decided to keep the heavy post for a time when I can write lucid prose. ("But John, you already wrote like 4 sentences that are clear and correct." "Shhh! Maybe they won't hear you!")

I am home, I am trying to recuperate and put on weight. It's not going as quickly as I would hope for, but I have high expectations. Hopefully things will get better. I will try to report again.

Update - Welcome to September

I'll bet you all are despising the title of this post just as me. I'm just going to ignore it and pretend we're still in June and will be for months to come.

I can't pretend that I'm home yet. But I'm ok with that right now. There is a certain amount of comfort that being in the hospital affords you. Like pain medication anytime you need some; an adjustable bed; food delivery; and some strange flower paintings on the wall. I guess that's why I spend lots of time reading, interneting and napping.

With the pain meds, I am feeling better, but still not 100%. The doctors hooked me to an IV line that gives me a constant pain reliever drip (dilaudid) but then I can also press a button every 6 minutes that gives me another dose. And in an effort to transition me to meds that I can take at home without having a 24 hour IV, they started me on a Fentanyl patch (75 mg).

Besides said patches, I'm also sucking down IV antibiotics and my normal meds. The plan, right now, is to have a procedure tomorrow to replace my biliary drain in my liver (right lobe for those keeping score at home). This would have been done yesterday, if not for the morons doctors being slightly unprepared ofr the operation. "Well, John, we have a size 14 like what you already have, or we have a 16, but it's not long enough to reach the other end." Later on, a conversation between a radiologist and an oncologist occured behind my back. This is what the oncologist told me later: " 'Well we wanted to make sure we had someone skilled to do the work.' So I asked him why he didn't have all of this prepped for today if he knew that's when the procedure was to take place." I was glad to know that the Dr. oncologist shared in my frustration and anger at the lack of planning.

Now that I know they wanted to get a more knowledgeable person on the team because of the "complexity of my biliary system", I feel a bit more relieved that I'm not dealing with a team of blockheads. That is also the first and possibly last time I will ever use the term "blockhead" in the prose form.

So yada yada yada, and so on and so forth - procedure is sometime on Thursday, I expect to be released on Friday, unless something unexpected happens (at this point in the show, some eery musical chords should be played on an antique organ full of spider and cobwebs and the camera should quickly zoom in to my face as I raise an eyebrow).

Or not.

Update August 29th - Pain Management Edition

The last two weeks have been a bit of a blur, as evidenced by my lack of an update. Let's just talk about this past week and my current status. Though I don't quite remember when it started, I've had abdominal pain pretty much since I left the hospital the last time. Over the past week, that pain has become harder to control. My pain meds did not seem to have as much an effect as they did previously. Every day became more of a struggle - to move, to sleep, to function. And much like my previous experience with unrelenting fatigue, this unrelenting pain took a major toll on my psyche.

I was very depressed this week. It felt like my body was not healing itself, more like deteriorating. I can handle the idea of death, but I can not deal with uncontrolled pain only leading to death. Emotionally, I was overloaded. I was crying myself to sleep, if I didn't drug myself up enough to sleep for 12 hours. I would cry after taking my blood thinner shot, not because it was painful - even though it was - but it was pain that I would/will have to endure every day for the rest of my life. And for what? Only to have the rest of my body waste away? 

I would cry at random times through out the day when I thought about my desire, or lack thereof, to go outside and enjoy the sun. And then there would be times when nothing was going on, and I would cry. Something had to be done.

Friday, I came into CINJ to meet with Dr. Maria Rueda-Lara, the Therapist/Psychiatrist here. She is a fantastic person to talk to and is very empathetic to everything I had to say. She knows the right questions to ask. And it was on her recommendation that I checked into the hospital here to get my pain under control.

So yesterday, I checked into my apartment on 5 North  at RWJ Hospital. I'm hooked up to a Dilaudid drip which allows me to push a button when I'm in pain. The doctors have been very amenable to changing my dosage until my pain is controlled. The idea is to figure out the correct level/dosage for me while I'm here so that we can send me home on oral pain meds of the same effectiveness.
Everything was going fairly well - but then of course, I had to spike a fever this afternoon. Blood cultures, antibiotics, urinalysis, chest x-ray: They took the usual precautions but I haven't heard anything more yet. We'll have to wait and see if this is going to be some big wrench in my treatment or just a minor glitch.

It's about 10PM and I need to try to get some sleep because my eyes are drooping. I'm sure I'm leaving things out, feel free to ask about it...

And to answer some questions from a previous post:
No, Rit, there is no current treatment protocol.
Yes, Sarah is still here providing tremendous support.
And my appetite and weight are turning the corner towards the positive.

Thanks for the support everyone.

Orrin Hatch doesn't know what he is talking about

I heard a soundbite from Republican Senator Hatch today, in which he said (I'm paraphrasing): "Our healthcare system works well for 275 million people. It's only the 15% of uninsured that we're trying to reinvent the wheel for..." or something along those lines. This is the argument against the Democratic-backed health care reform bills. Well, as someone who is insured, I have to say Mr. Hatch is very wrong. Our current insurance system is, indeed, broken. It is, indeed, inefficient. It needs to be fixed. And when it is fixed, I believe it will save us money in taxes and help businesses to grow by releasing them from the burdens of required coverage for their employees. And if Republicans are so against the current ideas being presented, let's hear some ideas from their side - instead of blanket "no"s to anything new.

You can have your pulpit back now.

August 18th - Current Status

Some of this may be repeat info, but I was writing an email to a friend when I realized that I could explain my current situation more concisely. So here's a copy and paste from that email:

I've lost some weight and look pretty awful (skinny - as far as I'm concerned), so the goal now is to get my liver system functioning correctly and gain some weight. As for my liver - I've got 3 drain things going on - there are two lobes of the liver, left and right. On my left side, I'm doing ok. I have an internal stent which holds open the bile duct to that lobe and allows the bile to drain to the small intestine/duodenum.

On the right side, before last week, there were problems with the drainage. The docs couldn't get a stent in place internally - junk was backing up - causing fevers and sending me to the hospital. They inserted an external drain - connecting my liver to a tube and a bag that I strap to my leg. Everything was flowing well with that setup until I was in the hospital again last week. Then the drain started leaking externally making a big mess. They took me in again to replace the tube with something larger and were able to also insert an internal stent. This was good news.

But with all of these drains and stents, the stuff that comes through has a high viscosity - not like water - more like mucus and other junk - so they have a tendency to get clogged. When things get clogged, I get fevers (likely caused by bacterial infections). So right now, I'm trying to keep my external drain flowing properly - it was clogged this morning. I have syringes with saline that I use to flush the line.

I'm also on blood thinners now. So I have to give myself a shot daily, like insulin for people with diabetes. It's not so bad. Putting the needle in is actually less painful than the after effect. It stings for a few minutes when I'm done. It's just another piece of garbage I have to deal with daily. They have me on 3 different antibiotics right now until Thursday. I'll be happy when those are done - subtract one thing from my list. Of course, then I'll have to watch out for fevers caused by any infection the antibiotics were covering :)

Hopefully, that clears up some things and updates you on others. Feel free to ask more questions if anything is unclear.

Update - August 14th Shock and Awe Edition

For the past week, the doctors at Robert Wood Johnson Hospital have been searching my body for a rogue group of bacteria that have been causing infection (and subsequently fevers). They've cultured my blood - drawing samples from my port, my right arm, my left arm. They sampled my urine, my feces, my bile. With the exception of a bile sample, everything came out negative. But we know they're in there - somewhere in the caves of my liver. When I arrived at the hospital last Tuesday, the basic war strategem was to carpet-bomb my body with all kinds of antibiotics.

Besides penicillin (which I'm allergic to), they infused me with every antibio I could think of, and some I've never heard of... For awhile, no combination worked well.

My fevers finally started to subside when we got my liver drainage working properly. It took some manipulation. They placed and external drain in my right lobe. My left lobe needed another ERCP to exchange the plastic stent that is currently there. The right lobe then started getting blocked again - or at least leaking like crazy. Back to the procedure room. This time, they were able to fix the external drain and even go in a little further and place an internal stent to mirror the one on the right.

So now, I feel like we're hunting Taliban. We sort of know where they are, but not exactly. Somewhere in the caves... Hopefully, they got scared off from all the missile attacks.

Besides all that, I decided to develop a pulmonary embolism, a little pneumonia and a strong distaste for hospital food. The PE (blood clot) could be deadly if it wasn't so small. It caused a rapid heartbeat and made it very hard for me to breath. This was the first thing that sent me to the hospital after my chemo treatment last Wednesday. They did a chest xray where they found the PE and also some fluid - which was eventually drained through thoracentesis. That's a story for another time. And I probably don't need to get into the food comment.

I'm back at home. Resting, recuperating, taking antibiotics, trying to eat food, which is mostly unappealing right now, and using my inspirometer (sp?) - this thing where you breathe in and out to make a marble float in a tube. It's supposed to force you to expand your lungs - definitely something I need to do now. 

I'm not in much pain right now... a little shoulder ache, and some aching in my upper abdomen. My biggest problem over the next few weeks will be gaining weight back and energy. I am officially off the second clinical trial of chemotherapy and I'm going to use the next few weeks to recuperate and make some decisions about how I want to move forward with my treatment... or without it.

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.

Update - June 26, Is this Summer? Edition

I'll bet that I frustrate some of you by not writing for lengthy periods of time. For most of you, hearing about my hospital visits and blood work and other data is something that is fulfilling - being able to stay up to date on my health, removing the cautious questions "so... how are you doing?" - but my extended absence has more to due with my boredom with tedious minutiae than it does with my sadistic desire to torture you all. Seriously. I'm not a sadist. Yet.

Since we last talked, I've been riding the rollercoaster as usual. The past 2-3 weeks have been very good for me. I'm up to 160 lbs - from my lowest and weakest of 140, but still down from what I consider to be my healthy weight of 170-180. This is a small miracle given that I've gained this weight during my chemo treatment over the last 2+ months. I credit much of that to the drugs prescribed to me by the doctors at CINJ. They have been fantastic about seeking the right chemical combination to return me back to a somewhat healthy life. Both of the anti-depressant pills that I take are appetite stimulants - Lexapro and Mirtazapine. And the Mirtazapine has the added benefit of causing sleepiness which has allowed me to stop taking Ambien which never gave me a satisfying sleep.

Most of my blood count numbers are cooperating, with the constant exception of my hemoglobins. I'm receiving an iron transfusion every week (and an occasional blood transfusion) to help keep that up - but I still am anemic to some degree. We're hoping that these iron transfusions will help my body to kickstart its own production of hemo-gremlins and we'll add Procrit to the mix - also to help that natural production. 

I've felt great over the past two weeks - even cutting the grass yesterday and cooking up some pan-seared scallops with couscous and green beans tonight - so I can't complain about that. However, this is a rollercoaster and what goes up...

...What went down is the results of my last CT scan show a new tumor. A little itsy-bitsy one about 1-2cm on the dome of my liver just under the diaphragm. Bad news: New tumor growth. Good news: It's in a location that does not pose a serious, immediate health risk (as opposed to in my lungs, spine or bile ducts). Bad news: This means I am longer in the clinical trial for plitidepsin and gemcitabine as the cancer has "out-smarted" the drugs. Good news: I helped scientific advancement with my participation in the trial (this is no small matter to me - in fact it's one of the main reasons I keep pushing through this) and I can now move on to other drug combinations.

Currently, I'm waiting to hear back from CINJ about another trial that they are running with a drug in combination with cisplatin. Good news: More scientific advancement. Bad news: Again I have to face the gun in a game of russian roulette with the side effect bullets loaded. Who knows how I'll react to these drugs. Good news: The time off from chemo allowed me to go to the dentist and get two major cavities taken care of. There was concern that a) if my platelet count was too low, I could bleed out during any procedure and b) both of the concerned teeth needed major work and possibly a root canal at the going rate of about $2000 per tooth. Luckily, my platelets were at 220 this week (whatever that number means) so no concerns about excessive bleeding and both teeth were able to be cleaned and filled without touching the nerve and without requiring root canals. Relief!

And so it goes. A number of months back, I was in a depressive state where I did not feel like doing anything - inside or outside of the house. Now, I'm enjoying reading again (just started David Foster Wallace's giganta-tome, Infinite Jest) and going outside whenever the rain lets up. 

You can maybe see why I don't update as frequently as before. I got other things on my mind, ya. But don't worry. Important stuff comes up and you'll be at least the fourth to know.

Cycle 2 Wrap-up

The summer time makes it very difficult for me to get motivated to post here. On the days when I'm feeling well, I prefer to be outside, reading a book or playing my guitar. On the days I don't feel well, I definitely do not feel like writing about it. Catch-22 and unfortunately, you, my adoring fans get the short end of the stick. But fear not, I have not disappeared and I will keep coming back to this journal page no matter how frequently or infrequently.

I'm just about wrapping up my second cycle through chemo. Received my third week's treatment yesterday (3 weeks of treatment and then one week off - which will be next week). I almost had another delay in treatment though as my blood tests came back with low white blood counts. Let me back up and explain how the treatment day works:

When I arrive at CINJ, usually between 7:30 and 8AM, the first step after sign in is to check my vitals: weight, blood pressure, and pulse. Then I go to a small private room - most people only get chairs in a common area, but I'm special since I'm in a clinical trial - and a nurse will come in and access my port. The port accessing procedure involves poking a large needle into the port (which does not hurt because I prep the area with lidocaine before I arrive). This needle is attached to the IV tubes where they feed me any drugs, fluids etc. that I need that day. The nurse can then flush the tubing and my port with saline first, and then blood is drawn from the same line. Again, no pain, hardly feel a thing - much more comfortable than a normal IV line in the arm.

The problem has been that, a number of times, my blood tests come back with low counts - usually hemoglobin or albumin or something; this time it was white blood cells - due to the fact that the blood is slightly diluted from the saline flush. So the solution has been to draw blood peripherally from my arm which has given a more accurate count on most occasions. So from now on, they will always do the blood draw from my arm instead of doing double work and causing us to worry.

Other than the stress of having to possibly postpone treatment again, things have been on the up and up for quite a few days now. After last week's treatment, I felt good on Tuesday before a rough Wednesday and Thursday. I had alot of fatigue and grade 1 nausea (yes, that is a medical term). It's that type of queasiness where you have overproduction of saliva in your mouth but you don't need to be sitting near the toilet 24-7. Not all that bad. Friday was a little better and then I had two great days of energy on Saturday and Sunday.

 Sarah and I went to NYC on Saturday to visit some friends of hers over from Germany. I met Bob Ryan - Sports Reporter who often appears on ESPN, and fellow New Jerseyan (he's from Trenton) - in Bryant Park. We took the Staten Island ferry for a free view of the city skyline and then headed up to Stuyvesant Town for a street fair. We finished off the day with a few hours in Central Park before heading home. Good weather, good times.

This week has started off well, too. I'm writing this while getting an iron transfusion - to help prop up my hemoglobins and stave off anemia. I'm always right on the border with my hemoglobin numbers. I need to be at 9.0 (whatever units) or else I can't receive treatment according to the clinical trial rules. I'm usually right at 9.0 to 10.5 when a normal person is up over 14.

But that's enough medical talk for today. I also wanted to share with you a project I worked on recently. One of the social workers here at CINJ (Brenda Bly) has been encouraging me to use my creativity to positively deal with cancer. She told me about a traveling exhibit that would be on display at CINJ for a few weeks at the beginning of June. After some discussion, I decided to do some self-portrait photography with the help of my friend, Izzy Ramirez. I'll post those photos here. Many thanks also to Colleen Grady for her handiwork with the hair shaver.

 I ended up laying the photos out into two 20x30 posters which are now on display in the lobby of CINJ. As I mentioned last week, this could turn into a larger project of photos of men with cancer, but I'm not going to jump the gun just yet. We'll see what happens.

With that, let me post some photos and get packed up. I'm just about done here at the Institute and am ready to take a nap! 

Update - May 31st

Another exciting week in the world of hospital visits.

I had been spiking fevers over the past few weeks. Normally, I would do the stupid thing and treat it at home with some Tylenol, plenty of water and a cold compress on my head. It almost always occurred in the evening around 10PM - absolutely the last thing I wanted to do at that hour would be to head to the hospital for an indeterminate amount of time. But with prodding from my doctor, I went to Raritan Bay Medical Center in Perth Amboy Monday evening.

My temperature was about 101.3 and Dr. Moss wanted to get blood cultures from me while the fever was active to try to locate a source for infection. Infection is the most likely cause for my fevers. Simple enough, right? Well after 5 hours, a chest x-ray, lots of IV fluids, blood cultures and some arguing with the doctor in the ER, I was finally able to leave Raritan Bay. Yikes.

Dr. Moss also wanted me to come to Robert Wood Johnson Hospital for IV antibiotics and other tests. I was admitted on Tuesday. This hospital experience was not bad in comparison to other visits I've had. On Wednesday, Dr. Ben-Menachem performed another ERCP on me. He removed one of my stents and replaced the other. This was a repeat of the same procedure I just had two weeks prior.

As Dr. Ben-Menachem explained, there is a build up of "junk" in my liver and bile ducts. The purpose of the stents is to keep the ducts open wide enough for that junk to flow out. The reason he removed one of the stents is that the right side of my biliary tree into the liver is constricted. The flow ain't got no flow. The stent wasn't helping this and he concluded it would be better not to block up anything even more than it was at present. The left side of the tree is wide open and functioning well with the stent.

The constriction on the right side is a bit of a concern. Ben-Menachem assured me that you can still live and function without any liver problems with just one side draining properly. However, this assumes that there will be no backup/build up in the liver. If bile does not drain from the liver, it could lead to cirrhosis and liver failure. To prevent that from happening, I may have to have another external drain placed - which I would am not looking forward to...

On Thursday, I had another catheter exchange for my gall bladder drain. The drain has been leaking at the entry site constantly for the past few weeks. This exchange and upsize should hopefully help by closing whatever gap there was between the tube and my skin. I actually just had this procedure done about 8 days prior - with no improvement on the leakage front. I had to laugh when one of the nurses  told me that the first time they went from a 10 to a 10.2. I thought to myself, "why even bother?" So this time, they went up to a 12. I wish it was an 11 only so I could quote Spinal Tap - "This one goes to eeeleven."

I was released (escaped? freed?) Friday morning after the team of doctors (oncologists, gastro specialists) decided to put me on semi-permanent antibiotics (Flagyll and Bactrim) to make sure I don't contract and infection and hopefully fight against any infection that was causing my fevers. So far it seems to be working as my temp hasn't gotten out of control since I've been out. However, being on antibiotics for a long time concerns me. Correct my medical knowledge if I'm wrong, but I think that antibiotics suppress your immune system a bit and also you can grow immune to them after prolonged use. I'm going to make an extra effort to counteract with probiotics, like those found in the yogurt I eat (Stonyfield Farms).

I've been feeling pretty good, even considering the fevers. I'm hoping to get back on track with the chemo treatments tomorrow. With that in mind, I'm receiving a blood transfusion today - while I type this to be exact. My darn hemoglobins keep jumping ship. We're still working on jump starting my body's ability to produce iron. I was taking iron supplements for awhile but it wasn't helping - my body wasn't absorbing it correctly. Dr. Moss has given me iron infusions twice now. One was before the last chemo session, the other was this past week while I was in the hospital. Once we can get things working again, she'll likely prescribe Procrit to help my body produce red blood cells and avoid anemia.

In related news, I did a photo shoot with Izzy Ramirez for an exhibit of "artwork" by cancer patients which will go on display at CINJ this week. The shoot was a self-portrait thing that included shaving a mohawk into my head (thanks Colleen!). I'll post some pictures after the exhibit is up and running. In conjunction with CINJ, I hope to turn this into a bigger project of photographing men with cancer, and possibly making a book out of it. Not to get ahead of myself, we know to expect the unexpected, but I'll keep you updated on its progress.

Update - May 19th

I guess it's been a little while since we've talked, eh? Things have been up and down here. I haven't received any chemotherapy treatments for various reasons: pain above my port, low hemoglobin counts and fever. It's hard to summarize everything in a few short paragraphs but let's give it a shot.

I've been having some pain in the catheter area above my port for a few weeks. We've run various tests for infections and then dye studies to see if fluid moved through correctly and other things. Everything comes up negative. The only explanation right now is that the clinical trial drug is irritating it. Strange. Oxycodone helps.

About a week and a half ago I went to the hospital with a very high fever. It was likely related to my bile duct stents. They were scheduled to be changed that Thursday - the fever started Tuesday night. Talk about timing. Almost 3 months to the day when the stents needed to be changed. That whole hospital trip was a hassle. Let's leave it at that...

This past Monday, I was ready to get treated again, finally... But then my hemoglobin count was too low - 8.9 when it needed to be 9.0. So now I'm scheduled for a blood transfusion... Whenever they can find blood that matches my type. O+ isn't difficult to find, but I've developed 4 antibodies that also need to be matched. Quite inconvenient.

For those of you who want to do something for me, please give strong consideration to giving blood. The likelihood of your blood and mine matching is very small, but it can help other people like me who need it. The larger the supply of blood in the banks, the easier it is to find matches for rare types.

Other than hospital and procedural hassles, I'm not feeling too bad. I am looking forward to getting back on some kind of routine, which should happen after this week of doctor visits and procedures. I'll try to keep you more updated than I have.

Cytotoxic Adventures, Parts 3 & 4

Last week was my third treatment and with tax season over, my dad (an accountant) was able to take some time out of the office and took me to CINJ. Nothing like a little father - son bonding over IV drugs and pre-made turkey sandwiches.

The day came very close to being a real short one. Every treatment day starts with blood being drawn from my port to check various blood count levels to make sure I can handle the drugs. My platelet count came back as 74. It needed to be 75 for treatment. Before pulling the plug on the day, Dr. Moss had the nurse draw a second sample - this one from my arm - with the thought that maybe the first sample was diluted with a bit of the saline that they use to flush my port. Good call on the Doc's part as the new count came back at 81. Some platelets must have been playing Hide N Go Seek. Luckily we found them.

For the non-medically trained, if your platelets are too low, your blood may not clot properly. This could cause uncontrollable bleeding. Usually they don't worry until the numbers fall down into the 50s. And a platelet transfusion isn't very helpful as the platelets would only stay in the system for about 24 hours (according to Dr. Moss). This is something to keep a watch on. At some point my platelets will likely be too low for this drug treatment and we'll either have to stop, switch drugs or lower the dosage. Expect the unexpected...

Besides that, the treatment day went by uneventfully. The side effects this week were a bit more noticeable. The 2 days of fatigue stretched out to 4-5 days of fatigue. I was sleeping about 10-12 hours during the night, napping once or twice during the day and still going to bed by 12 or 1AM. Luckily this fatigue hasn't been as debilitating as that from chemoembolization (CE). I can still get up and do things, I just have a shorter window of time when I feel like doing them. During the CE treatments, I didn't want to get off the couch for anything.

Also this week, I felt a bit nauseous. And this is hard to explain to everyone because as soon as I hear the word nauseous, I think of someone kneeling near the toilet readying to retch at any moment. This is not the case for me. My nausea is just a period when my stomach is uncomfortable and food is very unappealing to me. Again, it's not a debilitating feeling. It's an annoyance that I mostly was able to control with Zofran and some pretzels. This lasted about 3-4 days and mostly occurred in the evening after dinner.

But after these side effects settled down, I started feeling good. Maybe the nice weather is playing a part in it, but I feel rejuvenated. Saturday, I went to Queens with Chris Riquinha to see the Mets beat up on the Nationals at their new stadium. Wonderful day with great weather. Sunday, I spent some time in a hammock reading Angels and Demons (the literary equivalent of fried chicken - quick and enjoyable but hardly gourmet). And I'm looking forward to making a trip this weekend to Connecticut to see some friends.

With this week off from treatment, I'm looking forward to having energy, sunshine and fun. But then again, expect the unexpected...

Cytotoxic Adventures, Part 2

After last week's breeze through treatment, I was expecting more of the same this week. But as in every hospital or clinic visit, I've learned to expect the unexpected.

My infusion of gemcitabine went as planned. But just a few seconds after starting the infusion of plitidepsin (the clinical trial drug), I knew something was wrong. My chest tightened and I found it difficult to breathe. I knew I must be having an allergic reaction to the drug. I had read through all of the possible side effects and I'm sure this was listed as one. I immediately called for the nurse.

Two nurses came rushing into my room to stop the infusion and it seemed like most of the rest of the nursing staff was starting to gather around my room - it must have been a slow day. My face turned extremely red - it felt like the hottest fever I could ever imagine - and the blood vessels in my neck became very tight. My throat constricted and I decided I better lay down and relax. I started breathing through my nose very slowly. I knew if I panicked, it would only make things worse and it would make air even more difficult to breathe.

I lay there for what seems like eternity before the symptoms subsided. It was probably only a few minutes. As my blood returned to it's normal resting place (everywhere besides my head), I felt fine again. A long discussion ensued about what to do with me. Should they continue the treatment at all? Should it continue there (at CINJ) or in Robert Wood Johnson Hospital? (CINJ was closing at 6PM and it was already 5:15). At this point I shout into the hallway, "Do I have any say in this matter?" A nurse comes in and says, "Of course, you're the patient." "Then I'll come back tomorrow thanks." My mother and I proceeded over to Old Man Rafferty's in New Brunswick where I had a prime rib dinner.

And with that, I returned the next day. The doubled up the steroids and benadryl to hopefully stave off any reaction and the infusion was done very slowly over the course of 2.5 hours, rather than one. No problems.

Side effects this week were fatigue, as per usual, this time more than two days and a little bit of diarrhea. But that could have been the result of eating too much unhealthy fried foods over the past two days.

Monday is week three of chemo. The following week is only blood work, so I hope to feel good for a period of longer than a few days. Fingers crossed. I hope you feel good too. 

Cytotoxic Adventures, Part 1

Last Monday, I started systemic chemotherapy at the Cancer Institute of New Jersey (CINJ) in New Brunswick. My regimen includes an injection of gemcitabine, a cytotoxic drug that kills cancer cells and is often prescribed for cholangiocarcinoma, followed by a new drug being developed by a Spanish pharmaceutical company, named Pharmamar. This new drug is plitidepsin (also called apeldine) and is being tested in this Phase 1 clinical trial at CINJ for its effectiveness and toxicity.

It wasn't until Monday morning that I found out that I was accepted into the trial. The week prior, I had been told yes, and then told maybe not because some of my blood levels were out of whack. Luckily, everything came under control with the help of last week's blood transfusion and then some iron supplements. So I'm in. Which could be good - access to a new drug which may not come to market for 3-5 years - or bad - serving as a guinea pig to see how much toxicity my body can handle.

After the first week, I have to say I feel pretty good. The largest side effect I've felt is fatigue and the level of that fatigue varies on the day. One of the doctor's at CINJ prescribed Ritalin to help counteract that fatigue and it seems to work ok - at least for a few hours each day. To a lesser extent, I've felt slight twinges of nausea (controlled by Zofran) and a muscle cramp or two (fixed up with Oxycodone). Better living through chemistry, right? Now, if I can just get my night sweats under control.

This week was a busy one with trips to CINJ every day for blood work necessary for the trial. Next week and the weeks after get easier with just the long day of injection on Monday (about 5-6 hours from arrival to departure). I hope each week passes by as easily as this one has and that my blood counts stay high and keep me healthy. For anyone suffering side effects from chemo, I highly recommend asking your doctor for presciptions to counteract anything that feels wrong. It seems like they have at least one (sometimes more) answers for everything. And feeling good makes all the difference.

Happy holidays everyone.

Update - March 26th Die, Die, Die My Darling Edition

Before any freaks out about the title of this post, let me explain. It's a song title from the Misfits and I use it with a big smile on my face. I received a phone call from Dr. Geschwind's colleague this morning to review the findings from the MRI that I had on Tuesday at Johns Hopkins.

According to Dr. Geschwind, I had a "fantastic response" to the chemoembolization treatments. The tumor on my right lobe has shrunk by about 1.5 cm from 6.5 cm to 5.0 cm. Also much of the tumor seems to be in a state of necrosis. This means it's dead. So I sing "Die, die, die my darling!" in my best punk growl.

It's actually not completely dead. There could be some living cancer cells on the edge of the tumor that are too hard to see in the scan. But with the majority of the tumor being killed off, there is very little chance that it will grow anytime soon. This was a major issuee when I was first diagnosed because this tumor could block off my bile ducts if it expanded and then I would have major health problems and possibly liver failure. By getting it's growth under control, I have bought myself time to fight against the tumor that is in the left lobe of my liver and the cancer cells in my lymphatic system.

This news, which I received today, caps off a busy few days as far as my health and medical status go. Last Friday, I had a port installed under the skin in my chest. This port will allow a nurse to hook up an IV for me to receive chemotherapy treatment without having to poke my arm. Saturday morning, I was experiencing some new, sharp pain in my abdomen which warranted a visit to the emergency room. Oh the stories and frustrations I could speak of, but suffice to say, I was happy to leave the next day after no doctor could figure out what was wrong with me. 

On Monday, I met with Dr. Rebecca Moss, my oncologist at the Cancer Institute of NJ (affiliated with Robert Wood Johnson Hospital and UMDNJ). We spoke about starting systemic chemotherapy soon. The main purpose of this chemo regimen would be to try to clear my lymph system of cancerous cells - something that can't be done with localized treatment like chemoembolization. Dr. Moss convinced me to be in a clinical trial which will combine the drugs gemcitabine (which is pretty standard in the treatment of cholangiocarcinoma) with a new drug called plitidepsin. My thoughts are that I can always step out of the clinical trial if things aren't going well, but I can't get in if I start a different regimen first. This clinical trial will start April 6th for me. I'll be participating for at least two months, possibly longer. Hopefully, besides clearing my lymph system, the chemo will also attack the tumors on my liver.

Tuesday, Sarah and I went down to Baltimore for the aforementioned MRI. We spent some times with friends of mine from DC and Baltimore and then returned on Wednesday. And here we are on Thursday and the good news comes on the phone... Things are looking up - but there's still a long way to go.

Until April 6th, I don't have much going on. Sarah and I may make a short trip out of town to visit my relatives in South Jersey. I do have to go to the Cancer Institute on Monday for a blood transfusion as my hemoglobin count is low. This means I'm a bit anemic and would explain my overall fatigue over the past few weeks. Hopefully the new blood will give me some good energy. And telepathic powers.