Epilogue

Written by Michelle...

"Dear friends and family,

Thank you for your kind words and support since I haven't updated my blog but I have some things to share with you."

That's as far as Rhone got on his last blog update. About a week before he passed away, Daniel (a pastor from our church) came by.  He suggested that Rhone think about updating his blog to share what was on his mind, both as an update on his condition and to talk about his faith.  He recommended an app called Dragon that does voice to text.  We loaded it on the iPad and Rhone gave it a shot (the above), but he was just too tired.  It was hard for him, because this blog was so very important to him and he knew that it was (and will continue to be) a source of information, comfort, and inspiration to all those who read it. So, I will do my best to pick up for him here.

In his last updates, Rhone told you about his two June hospitalizations. In the following weeks, his focus was on two key things. First, to reduce the swelling (or ascities) in his abdomen. Second was to focus on building up his strength. Despite all his best efforts, at the end of July his doctor told him that he was unlikely to be in condition to receive chemotherapy for at least six weeks. At the same time, it was becoming obvious that we needed some additional help at home. His doctor suggested that we enter the hospice program.  Rhone had been very reluctant to even think about hospice in the past. However, with his abdomen swelling, his balance unreliable (with a new, large center of gravity in his mid-section), and his worsening discomfort and difficulty even finding a comfortable place to sleep in our home, it was obvious that we needed some additional resources.  And a hospital bed. With that, Rhone accepted hospice in order to support his objectives of improving his condition and returning to chemotherapy.

Right around the time that hospice started, Rhone was admitted for a day procedure at the University of Washington hospital to have a Pluerx catheter put in. He had gone in previously for outpatient paracentesis to take off fluid, but it took a lot out of him to go in for that and there was a solution where we could have a catheter inserted and be able to do the same type of fluid removal at home. The catheter leaves an external tube to that allows draining of the fluid into a vacuum pressured one liter bottle.  I am sure Rhone would want me to show you a picture and perhaps describe in detail all the steps to complete this procedure. I don't have any pictures, but suffice to say it was a multi step process involving careful focus on keeping the environment sterile and controlling the amount of fluid removed to avoid dangerous drops in blood pressure.  We would take off between 500 milliliters and one liter a few times a week.  On only one occasion did Rhone have a reaction to the draining. That was a feeling of nausea that subsided within about a half-hour after fluid was drained from his abdomen. Fortunately, his nurse had just left and she was in her car making calls when I ran out to get her. Typically, the draining left him with much relief and took fluid down in a visually noticeable amount. So, while it was a palliative treatment, it definitely was a positive for Rhone and made him feel at least somewhat better each time it was done.  Thank goodness for Debra, our hospice nurse, but I am proud to tell you I completed the procedure a few times on my own (with Rhone directing, of course, as he could have done it himself blindfolded!).

Overall, the time between the start of hospice on July 28 and Rhone's passing on August 22 was quite difficult.  He continued to experience more and more fatigue, and was clearly frustrated at his lack of progress. However, it is important to note that whenever he was asked how he was doing, his response was "pretty good." Only one time, and very late in the process, was his answer "not so good."  But it still included the word good!  Which I think is quite remarkable. I will always cherish those days.  Up until the last few days of his life, we would continue to try to get out once a day. The trips became more challenging, and we got stranger and stranger looks at the places we went. However, it was very important to Rhone to continue to live and be out in the world.  He could not have cared less that he was walking around with a walker and  bright white knee-high compression socks on.  He even received a blood transfusion the week before he passed away, in the hopes of improving his energy levels.  He was setting up his Fantasy Football team four days before he died.  I remain in awe of his courage, determination, and positive attitude. His positivity was unrelenting, and made it a joy to be married to him and to care for him.

It is very important to me that this blog have his full journey captured. I hope that you, his faithful readers, will continue to share his story and provide his blog to people dealing with this cancer, or really any cancer.  We have heard stories of people pointing friends to it just for the post on what chemo is really like.  He did such a great job of laying bare the facts and the optimism specific to his case, but made it relatable to all.  He was inspiring in all that he did, and the blog is no exception.  And please remember, he did not "lose" his fight.  He impacted this world in many important ways - then went to a place free of pain and suffering, knowing that he would be in God's grace.  I call that a win.

Rhone did a great job acknowledging those who gave him medical care.  It's worth calling out again.  Dr. Whiting, whose departure to focus on research was an immense loss to the University of Washington system and to countless patients.  All the team at the Seattle Care Alliance, who do their work with such care, focus and compassion.   I believe the three most critical factors in a fight like this are patient attitude, proactive medical care with a willingness to think creatively, and patient advocates who support, search, question and defend.  We tried to ensure Rhone rarely, if ever, attended any appointments alone.  He had a team in his family, who all came together to ensure he got the best care he could.

To those who continue to fight fibrolamellar, and to those who will be diagnosed in the future and come across this blog, I wish you all the best and I hope and pray that we will find a cure for this terrible disease very soon.  In just the past month alone, the world has also lost two amazing young women to this disease.  In honor of Kayte, Liza Blue, Rhone and all those who went before them - we will never stop fighting for you.

Thank you all for your support.

Aloha Rhone, we miss you more than words can say.

NOT AGAIN!

Have you ever been blind-sided, sucker-punched by a fever? Well, on the evening of June 28th I certainly took a beat down from that punch. I had been recovering and starting to make leaps and bounds of improvements since my last hospitalization each day, I had also just seen Dr. Harris that morning and was told he was pleased with "a normal rate of recovery". Then, boom! I start to feel a little flush at dusk and so we take my temperature. Sure enough, 102.5 After some four letter laced sentences, we decided to give things a half hour, to not only see if the fever would come down but to prep for an overnight ER stay just in case. 30 minutes later, no dice. In fact, the fever was up to 103. Off to the lovely UW ER. I have to say the admissions process was pretty quick and my ER RN was on top of things. They immediately expected suspected an infection of some kind, since I have a history of those. Septic - Admitted again.

They gave me a Tylenol, took x-rays, and did a CT scan to see if any of the stents from the previous week had shifted out of position but also to rule other possibilities out. While I was waiting for the CT scan results the fever had broken and I felt pretty good, considering I was sleeping on an uncomfortable bed in ER at 2am or so. All of the quick blood work and the CT scan came back clean, but my symptoms were so symptomatic of infection that they began me on a course of antibiotics anyway.

The oncology attending doctor took particular interest in the infection being in my ascites. An ascites is a bloody fluid build up in a cavity in your body. The fluid should be kind of a watery bloody mix and doesn't necessarily show up on any regular blood tests since it's kind of like a jar of fluid with a membrane surrounding it. My ascities was caused by the internal bleeding I had during the last "episode" (Mine is quite large, like 8 months pregnant large). Ultimately, my doctor decided to ultrasound then biopsy the ascities to determine if the fluid in there had infection. You may ask why not just suck all the fluid out at once if you're going to be in there with that torturer's needle, and he had a good answer, but I can't remember what it was. The most painful part of the biopsy is when they insert the painkiller. They do so in progressive stages, but boy does it sting like a son of a bitch. When the worst pain is behind me, I look down at my lower abdomen to see what's going to and happily see a bloody fluid filling up this humongo tube. The whole thing from ultrasound to band aid over the biopsy site took less than ten minutes.

However, my mid-section was pretty much uncovered during the whole ten minutes and I mentioned I started to feel cold. Nothing was done. Colder, nada. Until my arms started to shake. They rushed to get warm blanks, socks, and quilts but nothing would work control the chills and shakes I was having. I was really shaking to the point where it was harder to breath, talking came out in spurts, and my legs were cramping up super bad. After blasting hot lights at me and covering every part of my body multiple times with warm blankets, they gave me demerol which helped slowly calm my body down to the point I wasn't twitching uncontrollably. My fever was still there, despite the Tylenol, I had just gone through bad chills, and now my blood pressure was dropping dangerously low, so I was immediately sent to the ICU. What a difference this ICU experience was compared to the last one!

Not only was the room bigger and more fancy, but the male RN taking care of me was phenomenal. He really knew his stuff and helped with the fever, kept me in the loop, and monitored me. I felt like he was totally my advocate. The biggest hurdle was to get the blood pressure under control on its own. In the ICU, it was being supported by IV medication to keep it above acceptable levels. Over time, I was able to recover normal vital signs without medicinal help. Since a positive culture had not yet shown up on all my labs, the doctors decided it must be the stents. Although I had just undergone an ERCP three or four weeks back, we went ahead with another one. This ERCP was uneventful and in a day would help to bring my bilirubin down a few points (good thing) and make most of my other critical counts head in a positive direction. I was moved back down to the regular rooms again for a couple days then released on July 4th. I was not about to spend my birthday and July 4th in a hospital bed!

During the time I was in the hospital the second go around, any progress I had made after being released for the first time was pretty much gone. They were also pumping me full of fluids in the ICU to make sure I wasn't dehydrated. As you can expect, my stomach and abdomen were larger than they had ever been. The check out process was just a mess and the intern was completely overwhelmed. I ended up taking too low a dose of a key type of medicine after being released again, until my oncologist doubled the dose a few days later.

In any event, I'm still taking it day by day. Chemo is off the table for a while since my body is really fragile and has lost a ton of muscle mass (skin & bones on my upper back....eeewww). However, I can't eat large meals because the ascites (bloated stomach) pushes against my stomach cavity giving there less space in there.

Please pray for continued strength of body and mind for me and that I have no other "episodes" so I can get back to chemo therapy.

Stay Well,
Rhone

Internal Bleeding & Hospitalization

It all started on Tuesday, June 5th.  I awoke from a late afternoon nap to pretty bad discomfort and pain in my stomach region.  After a few minutes, I threw up the remnants of a late lunch that were still in my stomach.  I had opened and eaten a new bag of banana chips for lunch so I convinced myself the banana chips were bad and had caused the vomiting.  I got back into bed and surprisingly didn’t feel any better.  There still was pain in my belly.  I started popping pain pills (4mg dilaudid) and an hour later, they hadn’t even slightly reduced the pain.  This was bad.  Finally, I decided I had go to the ER.  I could barely stand up straight at this point and was nauseous from the pain.  At around 10pm, I shuffled into the all too familiar UW emergency admitting area complaining of severe pain in my midsection, to the point where I was short of breath.  They took me back to a room pretty quickly but then good ol’ process and disorganization took over, waiting over an hour to be administered effective pain relief.  Finally at 5 AM, I went for a CT scan of my midsection.  The CT scan showed significant internal bleeding in the area around my liver, with some of the blood leaking into the stomach.  This all causes severe pain in the midsection that can only be controlled with surgery and constant pain medication.

At dawn, I was admitted to the hospital and taken to a “regular” hospital room while a team of doctors discussed how best to treat me.  After a few short hours, I was moved to an ICU room at the top floor of the hospital so I could have constant RN supervision while I waited for an upcoming procedure to hopefully stop the bleeding.  Their hypothesis, based on the scan, was that the main liver tumor in my left lobe had begun to bleed.  This is not uncommon with liver tumors since they tend to be very vascularized (multiple blood sources/vessels attach themselves unnaturally to the tumor).    The procedure they planned to use to stop the bleeding is called liver embolization.  The surgical process of embolization  is similar to the Y90 procedure I had in September 2011.  The doctors insert a tube through the femoral artery, located in the groin (yes, gents my groin was “attacked” again), and with a variety of complex methods and machines figure out which blood vessels are connected to the liver.  They then use tiny coils to block the blood vessels from supplying any additional blood directly to the tumor. 

My embolization took 3-4 hours and the doctors felt they were able to block off 80-90% of the blood supply to the main tumor in the left lobe of my liver while also stopping the internal bleeding.  However, only time and future blood tests could confirm this.  It turns out they were definitely able to stop the bleeding because my hematocrit levels stabilized & started to head back up to a goal of 29-30. My hematocrit levels had been dropping (low 20’s) since I’d been in the hospital, despite the bags of blood they had been pumping into my IV, because the internal bleeding was unresolved.   I do remember going back to my room after the embolization and being (mentally) hungry because I hadn’t eaten anything in almost 2 days – I should eat something after going so long without anything, right?  I asked the RN who then asked the doctors if I could eat.  They both said yes so I was given a menu to order some food.  I tried to go bland with a grilled cheese and applesauce.  About three bites into the meal, I knew eating was a bad, bad choice.  Severe pain came screaming back at me.  It felt like my whole stomach was knotted into a severe cramp and that someone was stabbing me.  I spent the rest of the night battling the pain and can’t remember if I slept at all. 

In addition to the bout of severe pain from eating after the embolization and associated lack of sleep, this whole time, I had been receiving a pretty consistent high dose of pain medication.  Since my liver wasn’t functioning properly, my body wasn’t processing the medication as quickly as it was being administered.  As a result of that and decreasing vital signs, I have absolutely no recollection of what happened the next 36 hours so I am asking my wife, Michelle, who was lovingly by my side the whole time I was in the hospital to guest blog and fill in the blanks about what happened.

The next 36 hours or so are probably best left forgotten, however I’ll do my best to describe the events as much as my blurry recollection will allow!  Thursday was mostly consumed with pain management and monitoring basic functions.   The ICU team (doctors from the ICU itself, the gastroenterologists, the oncologists, the infectious disease doctors) is something like a Parade of Stars, with the nuance of the Stars often failing to be on the same page and the caregiver having to connect their dots to keep the patient as comfortable as possible.  Rhone’s vital signs and breathing became increasingly worse into Friday, and the GI fellow called me to say that they wanted to move forward with the ERCP procedure that had been scheduled for that week, but as recently as hours before had been deemed something we’d reconsider in a few weeks.  Fortunately, right around that time our good friend Dr. Bob had come by to visit and offered some amazing moral support as I weighed whether to allow the procedure to go forward.  The GI doctors felt it was urgent do to the procedure as some of Rhone’s symptoms that had to be addressed might be caused by the stents in the bile ducts.  The anesthesiologist pretty bluntly described going forward as ‘high risk.’  While I asked Rhone what he wanted to do, I knew he really was not in the state to properly evaluate the situation. So, after asking as many questions as I could – off he went.  It was a huge relief when Rhone’s parents, Bob and I were told that he had done ‘much better than expected’ and they considered the procedure a success.  He was on his way back to ICU.  That’s where (in retrospect) some of the more comical behavior began.  That night and the following, Rhone was hellbent on getting out of bed.  He came very close to being tied down and quite honestly I probably would have let it happen at 3 in the morning after several days of little to no sleep!  Fortunately for all concerned, with recovery underway and some adjustments to the meds Rhone increasingly gained his cooperativeness back, his vital signs improved, and he was ready to head to the ‘normal’ floor.  So, on Sunday the 10^th we headed to “7SE” and a week of further recovery.

After a week of recovering, trying to sleep, and waiting for my blood counts and vital signs to stabilize, I was feeling better and itching to get out of the hospital.  I hadn’t showered, I hadn’t gone outside or exposed my face to fresh or sunlight, and I was tired of the crappy food offered to patients who are supposed to be recovering.  My primary team of oncology doctors felt I was stable enough to return home on Sunday, June 17^th with a few conditions placed on my release.  I went home with a forced oxygen tube that wrapped around my ears and under my nose, I was to rest as much as possible, and get up to walk around my condo every once in a while.  Sold!  Those terms were completely acceptable to me, in fact, I would have signed on for a lot more regulations.  I felt like a fragile old man as I was placed in a wheelchair with my trusty oxygen container next to me.  The ride home was uneventful, I was just happy to be out of there, and I was eager to watch the final round of the US Open with my wife and parents. 

A few days later, I saw my new oncologist, Dr. Bill Harris.  We had a very sobering conversation about how sick I truly was in the hospital and how lucky I was to be out of the hospital so quickly.  Both he and the doctors treating me in the hospital were surprised.  Although I was out of the hospital, I’m not yet out of the woods.  The CT scan that was taken in the hospital showed that my lung tumors and my liver tumors, as well as the small lymph node tumors around the liver had all grown – the degree of growth was not discussed.  This meant that the chemo pill (lenollidimide) I started taking a few months back had been wholly ineffective on my cancer, which was disappointing since the side effects of that pill were the worst I’d experienced in recent memory.  I now have to find another form of chemo to treat my cancer.  First, I’d like the new chemo to stop the growth and give me more time.   As a bonus, I’d like to look for something that will elicit a shrinkage response.  The big problem right now is that my body, especially my liver, isn’t healthy enough to withstand chemotherapy in any form.  It’s ok to wait for 4 weeks from my hospital release (now ~2 weeks) so my body can heal, but waiting too long to “get better” from this recent episode might put me at a point where the cancer would be unchecked and have free reign to grow/spread further.  However, if I go with chemo too early, it could lead to liver failure which would almost certainly take me out quicker than the cancer would.  It’s a fine balance.

There are 3 main things that must happen: 1) the abdomen/belly area must decrease in size and pressure on other internal organ/areas.  I am trying to speed this along by taking 2 diuretics that hopefully will help flush the coagulated blood and other fluids that have built up in that region to be reabsorbed into the body’s blood stream.  2) My nutrition must improve, with an emphasis on a protein rich diet.  While in the hospital, my Albumin, which is a protein that measures liver function, dipped to alarmingly low levels because I was not getting sufficient protein or a balanced diet from the hospital food.  Michelle and my parents have been making meals stuffed with protein so I can eat 4-5 small meals over the course of the day.  Only blood tests can tell if this is improving.  3) My old nemesis the Bilirubin must also get better.  It spiked in the hospital and although my eyes are still somewhat yellow, the hope is that time resting will help it go back down.

For those of you who called, sent texts, visited, and offered to help in any way, Michelle and I want to express our sincere gratitude.  It’s always good to see or hear from friends and  loved ones when you’re stuck in a hospital for days on end. 

Post script……..I was about to the post this the evening of Thursday June 28^th since I was scheduled to see my oncologist Thursday afternoon.  In short, my oncologist was pleased with the recovery I’d made thus far.  The next post gives you an idea of what that didn’t happen.  

Bilirubin Update #4

Friends & Family,

I'm happy to say this is the last of the bilirubin updates, at least for now. The past 2 weeks have shown progressive improvement, to the point where my oncologist has declared my bilirubin levels healthy and stable (down to 2.9 as of this past Thursday, with the rest of my liver enzymes showing marked improvement)!

What does that mean? Well, I no longer have jaundice and the yellowish skin tone & eye tint that comes with it. My liver is now healthy enough to focus on treating the cancer directly instead of having to deal with the side effects of the cancer treatment (bilirubin problems). As a result, I can re-start the same regimen of chemotherapy this upcoming Monday. This may seem weird, but I'm looking forward to it. The act of going in for chemo is my physical way of saying I've over come liver failure for the time being and am back on track.

I've also been focused on gaining weight these past 2-3 weeks. I don't know what my current weight is, I have the official weigh in tomorrow - what am I boxer?! - but I'm confident that I've gained at least 5-7 pounds since my pants are starting to fit a little better around the waist. I've tried to eat between 2,500 and 3,000 calories a day, which isn't easy when you can't drink alcohol (i.e. no beer) and can't intake a lot of sugar (i.e. no boxes of krispy kremes). Also, my stomach shrunk from November through January when I was dealing with the extra pain and jaundice, so I'm not able to eat a lot in one sitting. To add extra calories, I've been drinking a bottle of Ensure Plus every afternoon and have been eating a generous slice of organic, no sugar added cheesecake from Whole Foods every evening. I now have an afternoon and evening sweet craving, uh oh! :) This is in addition to 3 meals a day and snacking in between. A special thank you to the Oshima Family who sent me a care package from Hawaii with some of my island favorites - taro pancake mix, Hawaiian Sun juice mix, Guava Jelly, etc - and to my sister in law, Megan, for providing me with a bounty of organic snacks for my desk.

There probably won't be another update until my next CT scan, which should be about 3-6 weeks from now. Since I've been off of chemo for the better part of the past two months, I'm somewhat apprehensive about what the next CT scan will show. I will be satisfied with a small amount of growth and will pray for no new tumors, but that's out of my hands.

Thank you all for the support, prayers, and resources you provided me when things were looking bleak. They really helped to buoy my spirits and give me the mental fortitude to keeping fighting and healing. Where the mind goes, the body will follow........

Stay well,

Rhone

Bilirubin Update #3

Friends and Family,

This past Thursday, I had more blood tests to monitor my liver health, most notably my bilirubin levels. Let me first explain why monitoring the bilirubin levels are so important. The liver is ultimately responsible for "cleaning" the excess bilirubin from the blood. When the liver is not properly filtering the bilirubin out the blood, the excess causes people's skin and eyes turn a yellowish hue, and it can be toxic to the liver rather quickly leading to liver failure if left untreated.

I'm relieved to report that my total bilirubin counts continue to go down (now at 7), which is a good thing! The last blood test I had, a week earlier, showed a similar decrease. Two in a row now constitutes a trend. I'm hoping it continues to the point where the counts are at or near normal levels. There is still some yellowish tone to the whites of my eyes, but my skin is looking much less sickly yellow and closer to scaringly pale, a by-product of Seattle winters :).

I continue to hold off on injected chemo treatments in hopes that my liver heals itself and the bilirubin gets down to normal. My oncologist and I are optimistically planning to re-start chemo (Oxaliplatin & Gemzar) at the end of February. In the meantime, I am trying to get as much rest as possible and continue to take Pentoxifylline pills (400mg 3x/day) coupled with high dose Vitamin E (2000 i.u./day) & Vitamin C (2000 mg/day). I am also trying to eat and drink as many calories as possible to get my weight up. Since my stomach has shrunk in the past few months, and let's face it - I was never a big guy to begin with, I have to drink most of my extra calories. I am making shakes out of the drink Ensure plus fruit and ice cream. I can't simply eat a lot of sweets/cakes/etc, since some studies have suggested that excess sugar is bad for cancer patients. I'm hoping to pack on the pounds by eating as much protein, carbs, and fat as possible. I know a lot of you think that I'm "lucky" to have this problem, but it's super frustrating to eat and eat without gaining any weight when you really want to. Yes, if it was possible, I'd take some pounds from any of you, but alas, there is no safe medical way to do that - bummer!

Michelle and I really enjoyed Monterey and Carmel. Monterey (where we stayed) was very touristy, in a charming way that wasn't too obnoxious. The "downtown" Carmel area was impressive with a hint of European small town to it - I can see why Clint Eastwood wanted to be Mayor! The Monterey Aquarium was good, but it wouldn't say it's the best one I've ever been to. Some exhibits are certainly impressive and they have a strong focus on wildlife preservation, but I wasn't blown away. I was definitely blown away by the Pebble Beach Golf Courses. I was able to walk holes 1, 2, 17, and 18 at Pebble Beach, while also driving around the coast holes of Spyglass Hill. Absolutely breathtaking!

I have more blood work scheduled for this Thursday. I can only pray that this trend continues and my bilirubin, along with the rest of my liver functions, return to normal so I can re-start with treating the cancer. Cancer. Such a terrible word. Something is definitely wrong with the world seeing as how so many people are diagnosed with it. Michelle and I just learned this weekend that someone we care about very much was diagnosed with a nasty cancer.

Please keep the prayers and positive thoughts coming, and let me know if there's anything I can do for you in return.

Stay Well,

Rhone

Bilirubin Update #2

(This post was written in an email on Friday, February 3rd)

Friends and Family,

I want to first start by thanking you all for your extremely positive and uplifting notes, prayers, thoughts and offers to help after my latest post. It was overwhelming, in a positive and motivational way. I have to admit that I had a tough day, emotionally, this past Wednesday. I am much better now and owe that in large part to all of you. I am also feeling better, and I was told today, don't look as yellow.

I had more blood work this afternoon and reviewed the results with my oncologist. I'm very happy to report that my bilirubin counts are going down (Thank you, Jesus)! They decreased from above 11 to 9 (optimal is less than 2) over the course of this week, which was the level they were prior to my ERCP procedure. It's hard to say what's causing the decrease - it may be a delayed positive benefit from the procedure and/or it may be the cumulative affect of the pentoxifylline + high dose vitamin C & E I have been taking. Whatever it is, I'll certainly take it! I'm really hoping & praying the decreased bilirubin counts continue, then we can call it a trend! My next blood work and Dr's appointment is Thursday morning, February 9th.

In the meantime, Michelle and I are taking a getaway trip we planned before Christmas, as a gift to each other. We are leaving tomorrow morning for Monterey and Carmel in Northern California. We are staying at a B&B a few blocks up from Cannery Row in Monterey, and plan on attending the practice days at the AT&T (boo!) Pebble Beach Pro-Am that is going on this weekend at the Pebble Beach Golf Complex. The highlights will be seeing the professional golfers up close, some big names are confirmed - including Tiger, and to hopefully get a chance to interact with some 49ers of today and of years past (Jim Harbaugh, Alex Smith, Jerry Rice, Dwight Clark, Harris Barton, and Brent Jones) who are participating in a charity golf competition versus some SF Giants. I'm also a huge fan of aquariums and from what I've read, the Monterey aquarium is top notch. The weather looks sunny and warmer than Seattle, but more than the weather I'm just looking forward to getting away and spending some time with my incredible wife for a few days. Michelle has been my true rock through all this, whom I love unconditionally, and without her I would not be alive today.

Happy Friday & a sincere thank you again for all your support. Keep the positive thoughts and prayers coming!

Stay Well,

Rhone

5 months of ups and downs - January 2012

Friends and Family,

Whew, what a rollercoaster ride these last 5 or so months have been! A lot has happened, and with each “event” occurring within a few weeks of one another, I put off posting to this blog until it became so daunting to actually tell the whole story that I’ve put it off until now.

In late September, I successfully underwent Y90 radioembolization on the right lobe of my liver. A month later, a CT scan showed that the Y90 had pretty much killed all of the new cancer spots in my liver – amazing for it to happen this quickly! It’s hard to say whether the procedure was completely curative, only time can tell that, but the Y90 killed all the new cancer that could be seen with modern techniques. The downside to the procedure has been prolonged, at times sharp pain to my lower right flank/lower back where the right lobe of the liver and right kidney is. This pain came on about a week after the Y90 procedure and hasn’t let up much since. The pain leads to pain medication, which leads to hard to control constipation. I’ve been dealing with constipation for the past 3-4 months with a bout of different medicines.

After a few emergency room visits and guesses at the pain potentially being caused by an inflamed, irradiated gall bladder or kidney stones (both of which have been ruled out for the time being), I started to develop jaundice 3 weeks ago. Jaundice is where your skin and the whites of your eyes turn a hue of “yellow”, not mustard yellow, but certainly not a normal skin tone that can be found at the cosmetics counter! The reason I developed jaundice was because one of my liver counts, bilirubin, began going up above normal levels. Bilirubin is usually excreted through the bile or urine – so when you aren’t peeing or bile is not flowing correctly in the body, bilirubin goes up and you can develop jaundice. The doctors did an ultrasound and looked in detail at the bile ducts in and around my liver to determine if there was any narrowing or blockage that would cause improper flow of bile from my liver. They saw some slight narrowing on the scan, enough to warrant going in to take a look.

So this past Thursday, I had an ERCP procedure where they stuck a camera down my throat, through my stomach and into the upper digestive area so they could see what was going on with the liver bile ducts. They felt there was enough narrowing to warrant placing a short term plastic stent in the bile duct leading from the right lobe of my liver into the digestive tract. Hopefully, this will fix the problem by allowing the bile to flow freely from the liver as needed. Unfortunately, the ERCP has side effects of its own – the most significant being temporary increased pain in the abdomen and liver area and doesn’t cure things over night. It can take up to a week for my body to show any results. The proof of success can be measured via blood tests to check the bilirubin levels. I have the first of those blood tests in the next day or two. I’ll be praying for positive results this week – at least a stabilization of the bilirubin and hopefully a decrease. The bilirubin continuing to rise can lead to liver failure and can be life threatening in the shorter term, so I have stopped all forms of chemo since early January in hopes of not irritating my liver any more so than it already is. I am in good spirits and will continue to fight against these set backs, but the increased bilirubin has made me more concerned than I can remember being lately. Oh and by the way, the 49ers made it all the way to the NFC championships – woo hoo! What a great run, producing the best pro game I have ever seen.

****Update from Tuesday: I wrote the above on Monday but didn’t get around to publishing it. I had a blood test and check in with my doctor today. The results were not what I had hoped or prayed for, as my bilirubin levels have continued to increase since the ERCP procedure. My doctors think I would have at least seen them stabilize or go down if the constricted bile duct (what the ERCP fixed) was in fact the culprit of the increased bilirubin counts. My total bilirubin counts have been raising a couple points over the past 2 weeks at each of the 3 day intervals where I get blood drawn – right now they are around 11.2, with normal being less than 1.5. My oncologist said there really is no bilirubin level where they start to get overly concerned, since it’s all relative to the rest of the liver functions – they have seen levels as high as above 30 in functioning patients. The short answer is they really don’t know what’s causing my bilirubin levels to go up or how to stabilize them at this point in time.

The ray of sunshine from otherwise disappointing results is that the rest of my liver counts are getting better or staying the same. Liver failure would come into play if all counts get worse over time and my liver started shutting down as a result. They are concerned about the continued rise of the bilirubin levels, but are buoyed by the fact the bilirubin counts are the only ones that are getting worse. This is a-typical and they aren’t sure what’s causing it. It could be general radiation damage to the liver, for which I’m taking a combination of high dose antioxidants (Vitamin C & E) as well as pentoxyflline. Pentoxyflline works to improve the blood flow in the body, especially in small blood vessels, by decreasing the viscosity of the blood. It is usually used for pain in the hands and feet, but may be able to help reverse any damage to my liver. The liver is also an amazing organ and could start to "heal" itself over time and stabilize the bilirubin on it's own - let's hope for that :)

At this point, it’s a wait and see game where only time will be able to tell what happens next. My doctors will continue to look for different, progressive ways to help offset the liver damage, but my well being over time is hard to predict at this point. I have to take advantage of each healthy day as it comes and deal with any hurdles that get thrown in my path – and I certainly will do that! I am more tired than usual and have lost a considerable amount of weight in the past 5 months (down to about 120 lbs), although my appetite recently has been very good. If you or any doctors you know have any suggestions on how best to attack radiation induced liver damage or high bilirubin counts, please email immediately with the ideas and I will take them up with my oncologist.

I’ve been slightly overwhelmed by the ups and down of cancer these past few months and have had to really rely on the support of my family and friends, you all! I wouldn’t be continuing the fight without you, seriously. As I promised earlier, I will take each day as it comes, cherish the good days, and will certainly do a better job of updating my blog more regularly.

Take care,

Rhone