yosoyrosa's Blog

Its the first Saturday of the new year and the new site is ready.  Puppy is now snoring at my feet, completely under the down throw and keeping my toes warm.  The past few days I've been at the computer catching up on work and moving over this blog content to a new location. 

The Experience Project is a wonderful concept, however as we are referred to others for support or are asked for info, at this point I felt that newcomers to the site need more help finding what they may be looking for.  If you visit www.ourliverspots.com you'll find that I have categorized the posts, listed various links and books I've found, and now have monthly archives as well. 

Bless you for your support and feedback, if you choose to continue following our experience, you'll find the new site has more to offer and plenty of room for comments.

Unfortunately, our latest news on the tumor in the right lobe wasn't as positive as the last evaluation.  The CT scan showed areas of viable tumor tissue, the TACE didn't get everything we'd hoped.  The Tumor Board (TB) team decided that the phase 1 evaluation for transplant will continue as planned, and the surgeon performing the laprascopic removal of the gall bladder will need to perform a Radio Frequency Ablation (RFA) at the same time if possible.

According to the Knol on google we were referred to, this procedure is used on occasion as a substitute to removal of cancerous tissue in the liver, basically they are planning to burn the bageebers out of the tumor killing all tissue in the way.  

The other suspect areas are of secondary concern, and the nodules in the lungs are listed as stable so they're also being put on the back burner.  Today's focus is getting through both Phase 1 and then to Phase 2 evaluations to be put on the transplant list.  We have the prescriptions for Xifaxan and Nexavar in hand, and are ready for just about anything.  After all, its better than the alternatives!

This past 2 weeks have been busier than ever, so apologies if you were waiting on an update.  When shopping with Dad after Thanksgiving, I took advantage of deep discounts this year to buy a WII sport with WII fit, again hoping that having a new distraction around the house will give us something to do together away from the ugly news about the economy, job losses and gloomy forecast for 2009.  In addition to the holidays, so much attention has been on puppy training, play time and all those short walks outside during the day, the hardware was still sitting in the box waiting to be installed until just last night.  The season has been exhausting.

Monday the 22nd my husband's cousin took him to the follow-up CT scan, and we heard on Wednesday morning that our doctor still represented our case to the tumor board at the university.  The coordinator told us the doctor's been very sick past few days, but hopefully he'll be able to call us with the results shortly.  By Thursday morning we had the fax from the imaging center, but still no call - our hopes for good news for christmas disappeared.

CT Abdomen and Pelvis:  Contiguous 5mm axial images from lung base to illiac crests with and without contrast.  Liver surface is nodular suggesting cirrhosis, which reconfirmed earlier findings.  Lipiodol seen related to most recent hypodense focus observed on CT scan 11/3, and is adjacent to previous chemoembolization.  Good news: No residual hypervascularity is noted surrounding these two foci of Lipiodol disposition- which translates to no new blood supply to the tumors.  No note of any downstaging though...

The report continues stating the 4 hypervascular foci from earlier scans are once again noted as "suspicious" and sizes given appear bigger.  The findings also stated more prominent than on prior studies which may be due to differences in technique although another focus of HCC cannot be entirely excluded.  This is scary; could it be that the areas that didn't appear to be viable during the angio are really sites where cancer is growing?  

Then there's the CT of the chest with contrast - this report calls out two small stable noncalcified pulmonary nodules in the lungs, with recommended follow up in 6 months for evaluation of stability (growth).  Could it be the cancer has spread to lungs? Of course it could be, but it could also be scar tissue from the years of smoking, so how do we know for sure? Suddenly the holidays could use a little extra helping of cheer.

Time to take the puppy out, and tomorrow will be a series of phone calls to the university for answers.

Its been very quiet past couple of weeks, we didn't have an appointment for the 30-day follow up, even though we'd contacted the coordinator several times.  After being told she cannot personally book appointments, she gave us the various doctor names and direct contact numbers of those who can.  At that point my husband started calling pretty much everyone, and then emailing our doctor directly that we were concerned during the transition of his patience we had fallen through the cracks.  Indeed we had.

This is when I urge everyone again to confirm "I own my health, and that includes my ongoing care, treatment and options".   

The doctor called back and apologized profusely, giving my hubby a run-down of the schedule: Multi-Phase CT on the monday before christmas, and an appointment on the 13th of January with the surgeon.  At that time they'll know if he'll just be having the gallbladder removed, or if they will also need to include the radiofrequency tumor attack.  We were back on track with a plan in hand.

I was asked what did I want for christmas, but instead of being noble and saying "you to be healthy" or even request a promise like "you to commit to eating healthy" I took a different path - "I want a puppy".  It didn't catch him by surprise, what did surprise me though was that he agreed!   Nothing big, it has to be in the house, but not a little yapper that looks like a rat.  Weiner dog?  Basset?  Nope - Beagle.

Ah, but this is not just because puppies are cute.  Dogs provide unconditional love and companionship during those bad days, something I just can't do when I'm at work and he's at home.  But was this a good decision?  Puppy slept in his bed in our bedroom, and I got up during the night for love & potty, I did breakfast & dinner feeding followed by potty, we had a routine, and it was pretty successful.  But when hubby had him for 4 days this week of puppy potty training, he was at wit's end.  Everything was a drama since he'd not taken any lactulose for ammonia, so had started shaking and was unable to perform basic calculations.  The two of them would go for a walk outside, and as soon as they came back in our warm house the pup would find a place to squat or poop.  Grump grump grump was what I heard when I walked in the door from work.

Last night I walked in with the crate and the announcement, I've got puppy care for the next 3 days.  My husband had an announcement of his own: the University hospital called.  They scheduled a pre-transplant work-up appointment, something that apparently lasts all day on Jan 7.  I quickly looked at my calendar, looking at every other tuesday and the appointment schedule.  Monday the 22nd, CT scan, and I'm estmating the tumor board to be on the 23rd, two weeks later is the 6th but his workup won't be complete by then.  Two weeks after that the 13th is the laprascopic procedure.  If I'm right, knowing I could easily be wrong, by the afternoon of the 13th we would have everything needed for a MELD score. 

Today we're back to hubby laying on the couch repeating "Oh, God" followed by "I'm sick".  I'm not sure if its the Nexavar half dose, the lactulose, or his poor diet while I'm gone that's brought him back to this condition.  Puppy is sleeping in the crate (30 min training sessions) and I'm praying for patience in surviving the weekend with them both.

Why is he thinking he's superman?  He was still going to job sites to keep them going and prepare for the thanksgiving feast without taking a break after the chemo.  Then it was not taking lactulose on the holiday because nobody wants to see the host be making a b-line to the toilet during dinner.   And then the next day he didn't want to take pain pills, and the syrup wasn't working and... one grumpy guy.  We ended up with a Friday melt-down, followed by a very painful Saturday.  It wasn't until 9 days after treatment we came up with a scheme that works for him:  Norco every 6 hours as prescribed, but since this is acetaminophen based (bad for liver) taking a couple Advil (ibuprophin) when the pain or any fever kicked in took the edge off.  By 11 days in, he was under a customer's house sweatting pipe to set plumbing.  14 days after treatment, he's only got a minor pain reminder occasionally.

The doctor did call after the last Tumor Board meeting, where they reviewed the film from the Angiogram in the TACE procedure.  He said they were very pleased, and that our next step is to get the CT done at 4 weeks.  Dr. D also confirmed that we were to meet with the surgeon to remove the gallbladder, and he would use that opportunity to use the radiofrequency method to treat suspicious areas still appearing on the CT.  What a relief- they were pleased he said!  When asked "so, does this mean we're going on the transplant list?" his response was professionally cautious - "I wouldn't break out the noisemakers and party hats yet, but we're definately closer than we were".   

Well, at least we know the next milestone: CT.  Unfortunately, during the transition of the medical team (we're going to miss this doctor), we're wondering if our care will maintain the same level.  After all, we don't have our appointment yet....

Wednesday we headed out to the university at lunch time, since our Hepatologist had requested a consult.  We took the train, and then a bus, cutting our cost per trip from $68 with Taxis down to only $26 for the two of us.  Unfortunately, I had pulled the bell and we got off the bus early which meant an extra .5 mile walk up a steep hill to get to the transplant center.  Going painfully slow, my hubby was worn out and out of breath by the time we got there.  We picked up lab paperwork, and walked down to the lab for blood to be drawn and tested.  After we made it back to the transplant office, we were rewarded for our efforts by a 40 minute face-to-face case review with the doctor.

My husband gave a speech about having so much to live for, and wanting to see his daughter graduate college and grandkids someday.  He asked the team be agressive as possible, he's willing to do whatever it takes.

At the end of the day, what we discussed included:

1. Pancreatitis is often caused by gallstones, however there have been cases reported with use of the drug Nexavar. The gastroenterologist has recommended a few times to have the gallbladder removed, and this would remove the largest variable thus reducing the risk of the pancreatitis happening again should we decide to start the medecine again.   
2. IF the TACE treatments left a small area of question, the team could consider localized radiofrequency "burning" to kill viable tumor tissue and remove the gallblader via laproscopic procedure at the same time.
3. Hepatic encephalopathy doesn't have a direct correllation with the ammonia blood levels, so regular monitoring has limited value, however once these symptoms are present it is important to keep on the daily dose even if 'feeling better'.  A patient should be evaluated in behavior and body function before titrating (adjusting) the level of medication to take to treat symptoms.  With the Lactulose, its essentially a couple sugars bound together that the human body doesn't digest, so you can take more without cause for concern other than distance to the bathroom when you experience it's explosive results.
4. Anyone showing symptoms for hepatic encephalopathy shouldn't be driving, and at the very least have an alert passenger if there is any concern, as they could inadvertantly drift or be too slow to react to situations putting lives at risk. 
5. Our hepatologist would no longer be coordinating our case, it would be transitioned to another member of the team, however we would continue with current care & course with the university.
6. Last and most important, we were on for Friday's TACE treatment.

Friday morning came quickly and the process had changed just a bit since this procedure would be done under a general anesthesia.  We were shuffled around with hospital admitting interviews, vitals, and an extensive screening for current medical history for the anesthesiologist followed the wait in pre-op that seemed to take forever.  As they started to wheel my husband away on the gurney, I was told he wouldn't be coming back to the same place he had before, and they recommended I wait downstairs in the surgery waiting center where there was cell reception for any updates.

After waiting the 90 minutes estimated for surgery, I started asking the attendent to call for status, and kept calling every 30 minutes until I was told I could come up to post-op.  There I found him in the closest bed to the door, surrounded by curtains that had been clamped together for privacy; my first impression was he was completely naked except the bundled up blanket and towels on his groin, BP cuff, IV and monitors for heart rate.  His lower legs and feet were exposed with his toes holding up a pair of hospital socks so they could quickly check his distal pulse.  He still had an hour to be still, so I found a chair and scooted it between him and the wall so I could be close.  He told me about a doctor who told him they didn't find a 2nd tumor after all, but wasn't sure, he could have been dreaming.

Right on schedule at 6:00pm, 11 hours after arrival they moved us down to the overnight stay unit.  The staff was as friendly as could be again and the nurses from last time welcomed us back.  Since it was a Friday night the unit was about half full, and very quiet.  There were no complications, blood pressure was only slightly elevated and he slept well.  I crashed on an empty bed next to him with the blanket the nurse had given me.  Quietly through the night they checked on him, sometimes I would open my eyes and watch, comfortable with his care there was no need to get up or fuss around. 

The next morning, as I left for coffee the doctor that performed the TACE came in to see our patient.  Not knowing he was there I took my time stopping by the film library to get the hard copy of the results and pick up the CD I'd sent over from the other hospital.  Excited to have results in hand I showed up bedside to get the news I'd missed the doctor.  Both were confirming that there had been no cancer blush in the left lobe when they'd explored that area.  There was a small blood vessel connecting the right hepatic artery to the original tumor site, so TACE #2 was focused on the big lesion again. 

Could it possibly be?  I checked the narrative from the proedure again to see "No additional lesions were identified in the remainder of the liver including suspected lesions in the left lobe.  the patient will follw-up with a CT examination within 1 month". 

Wow.  Really?  Wow.  Not wanting to get our hopes up we talked on the long drive home, if there is only one viable tumor, and its less than 5cm, he's within the Milan standard for transplant.  Well, we'll just have to see.

The rest of Saturday was a sleep day, followed by church on Sunday morning.  In the afternoon he rested while I did some of my honey-do list to prepare for Thanksgiving and drove over to my Dad's for a sanity break.  But late Sunday afternoon my husband was in quite a bit of pain and was hot to the touch.  I confirmed a 101 degree fever and quickly paged the on-call from IR. No worries, I was assured, some fever is normal as a side affect.  Give him 2 Advil and monitor, give a call back if conditions get any worse or do not improve. Panic over, I take a deep breath and start preparing for the week ahead.

So this weeks post is a bit long, as I've not taken the time to do my updates. I look back at the past several weeks in awe.  There are so many paths that we've considered and planned for, that now we wait again for the next step on Tuesday: Tumor Board review.  What will happen next?  What will they see?  Will it be CT or TACE, will that happen before or after meeting with the surgeon for the gallbladder removal? 

I looked up a verse from the Thanksgiving message in church today, that I highlighted thinking it appropriate
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him and he will make your paths straight (PB 3:5-6). 

However, it was the next verse that kept drawing my eyes to the page
Do not be wise in your own eyes;  fear the Lord and shun evil.  This will bring health to your body and nurishment to your bones. 

With this Book of hope in hand, I head off to join my hubby on the couch.

The countdown continued to the next TACE with what seemed like a normal week, except that my husband couldn't sleep, complaining of night cramps and head pressure.  Well, after a week of lying in bed, then getting up to help build out the closet organizers I had bought could most certainly bring on cramps.  My research before on his night cramps had shown that they often occurred in athletes after overexertion, where blood chemical balance gets out of whack.  Little did I know how blood chemical balance was exactly the problem, and whenever the kidney or liver isn't able to filter properly, the doctors order extra blood tests to monitor the balance of different enzymes, cells and elements that make up our river of life.

Friday morning my honey wasn't at all normal, and I had decided to work from home.  He complained he'd not been able to sleep all night, the 2nd in a row.  He repeated phrases, like "I'm sick" and often wouldn't answer a direct question, but would stare at his hands as if he couldn't wake up.  As I peeked in the living room between conference calls, I realized he wasn't there, and searching though the house I found him in a corner leaning on the bar half asleep.  I realized he'd not taken the blood pressure pill and gave it to him.  He tried to take his own blood pressure, but he was shaking and I could see his heartbeat through his shirt.  Holding his hands, they kept clutching and letting go of my fingers but when asked to squeeze the strength was even.  Push against me I asked again and again as I looked for signs of stroke, his eyes were dilating normally and within minutes he seemed to be coming back to normal.  

Several times I suggested we go to the doctor, telling him that the hospital could do some tests quickly.  He assured me "I'm fine" and I agreed to wait a bit.  I finished up on a couple more things for work, when I checked again to find him wandering in circles saying "Oh God", pause, then mumble "Oh God" again.  He went in the bathroom, closed the door, then came out, went into our bathroom, came out, then headed in my office.  I asked "where are you going" and he yelled back "To the Bathroom", so I quickly steered him in the right direction.  After that, I was able to get him to agree to Urgent Care, as that's where Dr. B his primary physician has an office.  

I was able to get him cleaned up, and he reluctantly let me dress him but kept looking at his PJs.  At one point, I had him look directly at me, his face totally slack and eyes half shut, a bit of drool coming from his mouth.  "Up" I said "time to go" and off he went to his desk, grabbing some paperwork.  I told him they weren't needed, but he wouldn't let go, I tried to pull them away and he said "No" like an upset toddler.  As I went back for his truck keys, he kept pulling on the front door, swearing each time it wouldn't open, and I was thankful that he couldn't work the lock at that moment I was ready to exit the house.  

Once in the truck, I had to buckle him in.  We started backing up when I realized he was pulling at the door handle while we were moving but the auto-lock wouldn't allow the door to open.  I opened the window for him, and stopped to let a worker at the neighbor's house know we were on our way back to the doctor, with my hubby sitting in the passenger seat, smiling and finally managed to say the word "hi".  

Once we got to urgent care, I requested an ammonia test and his primary, both as quickly as possible.  When the doctor came in, she quickly agreed in the assessment - his body wasn't filtering out ammonia fast enough, so his brain was basically swimming in bacteria byproducts.  They did the blood tests requested along with a full CBC, prescribing Lactulose.

Lactulose is a pretty brutal laxative, used with liver patients as it helps quickly remove any proteins from the intestine & colon before bacteria can assist with the digestion.  It was absolutely amazing, within 2 bowel movements and 4 hours later, it was like I had my husband back from the brain dead.  The doctor called and confirmed the findings, faxing over the bloodwork and test results.  Normal levels of ammonia are between 19 and 35, where my honey has tested at 52 and 59 over the past year.  This day, it was 149, wow.

We contacted the hepatologist at the university, and he agreed that the diet for now is low protein, and to take the lactulose daily, increasing the dosage as necessary to achieve 2 - 4 loose bowel movements per day to help the body's waste elimination process.  He's asked to meet with us on Wednesday, since the TACE procedure is on Friday.  Everyone wants to make sure this next treatment is a success. 

The good doctor also recommended an article I found very helpful, which can be found by searching the words hepatic, ammonia and knol in google, or by using the link http://knol.google.com/k/tim-davern/hepatic-encephalopathy/4ptrsx4j4vcq/4#. 

Speaking of sleep, I know its getting late and time for me to log off, there's much to do tomorrow. 

My research on the internet from www.nih.gov had showed that pancreatitis normally resolves within 5-7 days if there is no food intake and plenty of fluids.  Right on schedule, Friday night he was eating solid foods, and were were working with the medical staff to ensure his release.  Alas it was too late for sign-out by the hospital doctor so he'd have to stay for morning rounds before we could bring him home.

The day after we received the CT scan results, the hospital had performed another procedure to visualize the belly organs using radioisotope.  The findings again confirmed the cholecystitis which is a thickening of the gallbladder wall and reduction in the ability to concentrate and store bile, which is required to break down fats as part of digestion.   The screening also confirmed the pancratitis, however there was no obstruction of the cystic or common bile duct requiring immediate treatment since if a gallstone was the root cause of the problem, it had passed. 

There's a lot to be said about making sure to work with the caregivers in the hospital, and take an active role in monitoring the activity.  For those going through the experience alone, my advice is to ensure there is someone from the community, a church or agency that will be a patient advocate.  Examples in our case included:

• Bring current medication with you when you go to the hospital, we were asked several times about what was being taken, dosage and frequency.  It was easier to hand over the bottles.
• I had forgotten the case file with recent results and visits, this would have been helpful in providing dates, progress and contact information.
• I was asked if we had a current copy of an advance directive for the file, this should be completed and in hand prior to arrival to make sure wishes are followed should worst case scenario emerge.
• The hospital doctor overseeing the case discussed his current case treatments with both of us.  Since this was the community hospital with limited cancer care staff, we agreed there was little tolerance for any complications.  If anything invasive was prescribed or alarming change in physiology occured, he would be transferred immediatly to the university hospital as long as he was stable enough for the move.
• The IV drug initially provided was morphine which made him naseous, and he was transitioned to Norco since he'd had no problems with that, however with the tylenol base it was not good for his liver.  You can negotiate treatment, eventually we agreed to try demorol making sure there was at least one or two drugs for nausea on the chart so they would be available if necessary. 
• All scans and test results were requested and personally sent to the university transplant team, to make sure they had a current copy on file.
• Intravenous drugs administerred in the veins of the hand need to be checked, as we found after 4 days his hand looked irritated and swoolen, the attending nurse at the time admitted it should have been changed much earlier.  We also had to request staff change the bedclothes and blankets, as there was no regular change routine as he had not soiled them.
• Although the night shifts were wonderful, we monitored how long it took nurses to respond to the call button or a phone call for help during the day shifts after noticing it had been in excess of 30 minutes.  IV bag monitors would continue to beep every few minutes; the alarm stopped having a sense of urgency as his progress improved.  We were assured that the nurse/patient ratio was well within guidelines and I saw that on several occasions I could find them at the desk chatting away.  My husband complained to the hospital doctor, again to the head nurse on each shift, and after watching another patient from the monitored care area leaving without absence being noticed, we are writing a formal complaint to the hospital administration.

At the end of the week, I felt strong and accepted it all as another hiccup in the course of treatment.  Reality sunk in last night we had held onto each other in bed, luxurious closeness and comfort, words weren't needed or wanted.    

When the two of us arrived in church this morning, we both sat through prayer with tears running down our cheeks.  After service, I joined an old friend who I used to sing with was playing piano, and all she had to say was "You've had quite a walk this year" for me to break down again.  A woman strong in faith and conviction, with so many challenges of her own, she continued to offer her support to us, and I was truly humbled.  She encouraged me to find my voice again, as she reminded me this is where I'd found my faith and connection with God before.

This is the scariest time of our lives, and are counting down to the next TACE treatment scheduled in only 12 days.  I picked up a songbook, and put it down again.  I'm writing now, and hoping I'll be singing again soon. 

I had been by his side when the emergency room staff did the sonogram.  She seemed to take forever, chatting occasionally, asking why he'd not had the gall bladder removed yet since there was a presence of gallstones.  I watched her hone in on the left kidney taking picture after picture while my husband covered his eyes with his arm since his head was in such pain.  When she finished up, she wheeled out the hospital bed to the Xray, the hospital wasn't taking any chances on missing anything.

An hour had gone by, then two so I stepped out to get a sweater and my computer from the truck, gone maybe 7-8 minutes after hours of sitting at my husband's side.  When I walked back in the hospital emergency room my hubby was in, I could see right away that there was a major problem.  The emergency doctor was on his left, the ER nurse on the right, and my hubby said they had told him while I was out that they found another possible tumor on his left kidney.  Oh, yeah, and he had pancreatitis, this whas what was causing the pain.

We were devastated, and when they left I admitted out loud that this one scared me, he agreed.  However, when common sense came around I reminded both of us that a sonogram is a preliminary diagnostic tool and that she had said that visibilility of the pancreas had been impaired due to belly gas.  These are sound waves that leave 'black holes' in the picture if for any reason there is no bounce-back response, such as a bubble of gas.  

Within the hour, the ER nurse brought me the images CD that I asked for, and here we were in the emergency room with a laptop looking at pictures taken just hours earlier, including where the technician had clearly marked 3 pictures with a black spot where the kidney had been identified.  The area she had marked was pretty large, nearly as large as one of his larger liver lesions, and a growth of that size within 6 weeks of the last CT seemed highly unlikely.   Moving on to the next set, we saw the chest xrays, including where the buckle and zipper were showing and laughed.  We both took joy in seeing this solid white mass in the lower right ribcage, mid right-lobe liver where the TACE procedure had taken place 3 weeks ago.  It looked a lot like the example from the website that the unversity hepatologist had shown us of a 'successful' termination of a tumor.  Hope was alive again.

After getting moved to the Med Surg floor, the next day was a tough one with the dinner drip with morphine making him really nauseous. Not taking the powerful painkillers meant severe discomfort and elevated blood pressure.  At noon, there was an order for a follow-up CT scan, but by the time I'd gotten there at 4:00 after work, he had just started taking the contrast.  That was especially tough, as each drink further aggravated the pancreas, and totally contradicted the orders of 'no food, no drink, nothing orally, nada', he was totally miserable.   At 7:00pm they came with the wheelchair to bring him to the scan, me and his cousin trailing behind. 

Finally, at 8:00 the hospital speaker system was announcing the end of visiting hours, so I started packing up and asking for the films.  After being pointed in a few different directions, I set off alone on my way to radiology.  Politely but firmly I asked for the films for patient hubby, with any results if they'd had them from the read yet.  Since the tech remembered our case, he smiled and said to wait just a moment, he'd not had a chance to prepare them yet, but within minutes I had the answers.  In cryptic scribble I could see the measured notes of liver lesions, gallstones, and nothing, absolutely nothing about the kidney or anything on the left side.

Back in the hospital room, there was no leaving until I gave him what I could make out.  No kidney I announced, he didn't call out anything on the kidney!  However, we still needed to wait for the final report, this was, after all, a preliminary read after hours.  Anxious, I put in the CD and flipped through to the kidney slices of the CT, there was no gaping hole like what the sonogram indicated.  Both kidneys were nearly identical flip versions of each other, I knew I couldn't find anything, but needed to get these pictures to the experts in the university.

And so the report reads: Both kidneys are normal in size and configuration showing no evidence of solid or cystic mass... A single large 3.2x 3.0x 3.0 cm course calcification has developed in the interval at the central right love of the liver of undetermined etiology.  Ha! He see's our TACE and the kidneys are confirmed clear!

So here we are this evening, and he's snoozing fairly comfortabely again, snoring.  I hear the background noise of the two TV in the room broadcasting election results, the hum of the drip pump, and the regular air pressure pump of the circulation pads they wrapped around his legs to keep the blood flowing.  The lights are off and its dark at 7:00pm, there's no comfortable easy chair to relax in.   We've moved from morphine to demoral, and all medications are changed to be through IV.  The doctor has agreed that if there are any complications whatsoever, transport to university is the plan unless he's not stable for the move.  The liquids have been doubled in an effort to flush the pancreas as quickly as possible, yet at this point it looks like he'll be here for a while. 

All seemed well, except that he'd reported pretty painful heartburn throughout the day.  Still, there was work to do, so he was at the computer for most of the day while I was running errands, after all, we had a birthday party to go to on Saturday night.  I came bounding in with only 45 minutes before we had to leave, and he wasn't looking good but claimed he just needed a shower to freshen up.  We made it to the vetrans hall, and he was belching up a storm even before starting on his diet coke.

Each time he complained, I rolled my eyes, wondering why someone with a sore stomach would be piling on a burrito on top of the tomale and chips that were already on the plate.  No salsa, no peppers was a good thing, and we even posed for pictures.  You could find me doing the chicken dance while he was having a piece of birthday cake, chatting with the neighbors.  When I got back to the table, I could see it in his face, it was time to go.  As fast as we rushed in, I was speedwalking into the local grocery store to get some more antacids.  Between the tablets and the pain pill, he slept throught the night, kinda.

The next morning, he woke me up asking me to call the nurse line.  The pain was getting worse and he was getting nauseous.  We confirmed the symptoms didn't resemble a heart attack, and figured that it was the medication kicking in and I went over everything he ate over the past 24 hours, confirming everything that is known to cause heartburn.  I committed to calling his doctor and would take him in to the urgent care if we couldn't resolve this soon.  He wouldn't eat anything, convinced he would vomit again, and laid back on the couch.  Hardened to months of complaining of such things, I went to the grocery with my list of lowfat heartburn friendly foods for the week. 

On my arrival home it was clear things weren't better, they'd just continued to get worse.  I checked again possible side affects of the medication, printed out the patient information and declared "that's it, we're off to the emergency room".  We paged the on-call hepataologist from the university and let him know we were on the way in to the local hospital.

During check-in, the staff seemed to perk up when my husband announced he's a liver cancer patient waiting on transplant, and his having chest pains. Within minutes he was surrounded by staff hooking him up to various monitoring devices.  Blood pressure was up to dangerous levels (219/107) and his head started hurting.  The whole ER adventure had begun, blood work and sonogram.

By the end of the evening we had a diagnosis: Pancreatitis

It looks like he'll be staying a spell

My insurance company offers an online drug service to help save on costs for ongoing prescriptions, where you can order a 90-day supply online with refills to arrive by mail.  Fortunately, this service has a contract to distribute Nexavar, and the website said this medication was covered by our insurance plan.

Every day we called, twice requesting that the transplant center send in the doctor's orders by fax.  Apparently the fax-back service to audit against fraud checks the sender fax number to make sure a valid health care provider ordered the drugs.  The audit couldn't connect so we were told to have the doctor call the pharmacist, but the university has a policy against calling in the orders by phone.  Friday - had the doctor fax again, Saturday I called and got one story, Sunday a different story and was told to again check Monday.  Monday night I was told they didn't know what I was talking about but it was promised to be shipped on Tuesday overnight with a bill and I'd get a tracking number, but then another call said it couldn't be sent until we break out our credit card for copay.  What a challenge!

Even with one down day (you know, the ones that you hear 'just kill me now') the week is wrapping up on a good note,  we now have a 90-day supply of meds with 3 refills on file.  So far, there's been no side-affects to report.  We're checking blood pressure a couple times a day, and no loss of appetite or energy.  OK, I know, it's only been 3 doses so far....

I wish I could say we're back to normal, but we're not quite there.  This week was a follow-up for the blood pressure (which is good) and a follow-up endoscopy that came back with positive news that nothing unusual was found - wonderful.  

If you're not sure what the endoscopy is, think about having a camera go really far down your throat.  This is really important for patients that have liver damage, as variceal hemorrhage most often occur in advance stage patients, that have veins of the esophagus that are swollen, can burst and start bleeding.  Its really quite dramatic, as the patient starts vomiting large volumes of blood, they're not very coherent and have very low blood pressure and may be in shock by the time they arrive in the emergency room.  These varicies may also appear in the stomach, intestine and colon, requiring a surgical shunt (TIPS) to prevent a re-bleed.  Schedule that colonoscopy & endoscopy at least once a year if you are at risk!  

There is still the whole emotional side of being sick & tired of being sick & tired. Along with that, add the stress of not contributing 100% of normal financially due to the near full-time job of being a patient, and watching the stock market tank in an 'economic meltdown'.   A 2005 Harvard study showed that in 2001, illness and medical bills were cited in nearly half of US bankruptcies for that year, most were middle class folks with insurance, and 56% owned a home, and were college educated.  The research, carried out jointly by researchers at Harvard Law School and Harvard Medical School, is the first in-depth study of medical causes of bankruptcy. With the cooperation of bankruptcy judges in five Federal districts (in California, Illinois, Pennsylvania, Tennessee and Texas) they administered questionnaires to bankruptcy filers and reviewed their court records.  

I found that the online portal for my insurance cited coverage for the Nexavar, and had a form for the physician to fill in and fax the prescription.  It's been faxed over twice, and there is some kind of communication issue between doctor's office and insurance pharmacy, because we still can't order the medication.  

This weekend I'm staying at home, getting my honey hugs and doing the honey-do list.  At some point I'll have the bank and savings account reconciled, and take a look at what's left of our investments in the stock market.  We need to know for sure where we stand, and have a budget worked out, just in case we find the medication won't be covered after all.     

 In case, my friend, you're new to being around a liver disease patient, let me reassure you that the #1 symptom is common, absolute fatigue, tired all the time and no energy to go anywhere.  In our home, the couch becomes a bed and TV command center during treatment, and napping occurs at any time.  No food sounds interesting but boredom leads to munching.  Requests for take-out comfort food such as pizza gets called out.  I'm tired too - putting in 10+ hours plus commute just to come home, make dinner and clean house isn't appealing either, so pizza this week, along with chili and tonight was an easy barley spinach risotto for another warm-you-up from inside dinner.

The stock market and economic downturn have setup camp in our living room, election sound-bites are zapped away for some cheesy 80s movie a few channels down, flip - spanish, flip - spanish, flip - korean, flip - and its obvious boredom has set in and the calls from friends have dwindled.  Construction work is out, our network of contacts don't know if he'll be able to do the work, and projects aren't getting funded with few remodeling or home improvement loans being awarded.  Flip - CSI rerun, flip - Survivor rerun, flip - become an expert on everything after all the episodes of "How its Made" and discovery channel specials.

The blood pressure readings dropped shortly after the last capsule of antibiotics.  The past few readings from the new home monitor are back in 120/70 range.  The Norco pills are gone too, and so has most the pain.  Occasionally there is a quick stab of reminder up under the ribs, or in the groin especially after turning the wrong way.  The purple blackness that had spread across the lower abdomen is now ringed with the red and green of a healing bruise, and that tiredness.

Our good doctor called today, I'm disappointed I missed it.  Apparently, after meeting with the attending staff there was some information we needed to be aware of.

• They were going to do a TACE of the left lobe
• They may have to treat the right lobe again for more
• This could turn out to be a series of treatments
• The recommendation is to start the Nexavar right away, not wait until after TACE treatments are done in hopes of keeping new tumors at bay
• This medication is very new, and very expensive, insurance may not cover it
• They will be monitoring the case for a few months after TACE, and several more before his score will be at a point where he'd be considered for transplant (MELD score of 30+ norm for recipient)
• This university hospital would not consider a Hep C donor, even if now virus-free
• Live donors are preferred to be 18-30 no medical conditions, 30-50 very healthy

The criteria just eliminated the possible donor we did have offer, which explains his sour mood.  We may have to reach in our pockets to buy health, as I doubt that we'll qualify for the patient assistance program judging from the college financial aid responses we've received past 2 years.  So now we have the faxed prescription, and form to send in to the Nexavar REACH program, and our fingers are crossed.  

Our daughter is away at the university, I'm heading off to a conference, so in comes the cousin from the southern states to take the reigns for the next few days.  Good!  I'm sure her comfort food is a better than the take out I brought home this week.

Today its only 4 days since treatment, and life is back to normal, mostly. This morning we walked into church service, and we were treated a bit like celebrities.  Like most of them, I had also expected that a few days after a chemo treatment at the hospital, that my husband would be in recovery, or at the very least resting up at home.  Instead here we were, reviewing the gospel of Ephesians, strenghthening our faith and connecting in fellowship one by one with everyone around us.  

All weekend, my mind keeps turning back to a comment I heard 3rd hand, this gal's husband claimed that many Hep C patients pray for liver cancer so they can get a transplant.  I was completely taken by surprise at such a wish - such a wholly new and different perspective.

Need I remind anyone that is a Hepatitis patient (HCV) has a blood borne disease, passed through handling infected blood products/waste (beware nurses!), poorly screened blood transfusions (especially in the 60s and 70s), tattoo and piercing needles, or IV drug use?  Replacing the liver does not kill the disease!  Cirrhosis and all those other awful effects that have occurred and stressed the liver over time,  is very likely to reoccur with the new organ if the virus has not been responsive to treatment before or immediately after transplant.

Wishing for liver cancer for a transplant?  Are you nuts?  Big reminder here - Liver cancer (HCC- Hepatocelluar Carcinoma) is metastatic disease, meaning spreads throughout the body if left untreated, and is highly aggressive with studies showing tumors doubling in size every 3-4 months, hence the reason why the MELD score is based on estimated survival rate for next 90 days.  Wishing to go through the risk, the chemo, and effects doesn't appear logical to me, especially with the limited number of organs available through donation.  Any patient who hopes for the disease of HCC could quickly find themselves off the list entirely as another 'drop-out' candidate for too high a risk / too far diseased. 

Well, coming from someone experiencing this twisted turn of events of having the magic three (HCV, Cirrhosis, HCC), we're looking at this transplant thing as its is designed - to prolong my husbands time here with a quality of life worth living.  This is our only curative option for cancer, however the Hep C and its ongoing battle will still be part of our lives.  Add to that from the day of transplant we'll need to deal with the anti-rejection drugs and the risks they pose that secondary infection, disease or cancer that manifests itself while the immune system is suppressed.  

However, my 3rd hand (deluded?) friend does have a point.  If everyone was a donor, then each deadly accident we hear about on the news would not only take life, it would give life.  There are nearly 99,500 in the United States today waiting on a transplant, and over 940 on the liver waiting list at our university hospital.  Last year, only 118 liver transplants were performed at the facility, and the remaining 108 were transferred or taken off the list, with just as many new names (232) last year signing up to take their place.  Organs are at a severe shortage, and not everyone is like us that has a beloved one that has offered up live donation if it is possible.  Perhaps it is these statistics that one wish for any 'edge' to get what they believe is their only hope for this life.

In no way do we wish that someone else to die so that my husband may live, nor do we want to 'take cuts' in front of anyone else that is at the edge of life that is to be spared first.  We do not go to Sunday service just so we and others will pray to get the transplant we want, only that we understand and be prepared for the path that is laid before us.  

I told another friend who has the same GI and university center (3 transplants in her lifetime) that my husband was hoping to get on the list.  Her response was "Really?  Cool!"  I had laughed and said to her "Only you would say that." to which she simply replied "Yeah?  Well it sure beats the alternatives!"   I wholeheartedly agree.

What a surprising night!  3 days ago my honey was in a 3hr procedure for chemotherapy, and last night he was pain free without medication.  This morning he had a bit of a headache, and the hematoma is purple and sore, so a pain pill will start the day.  As a liver disease patient, we have to watch any pain medication that has acetaminophen (including Norco) up to, but not more than, 2 grams a day safely for pain.

The whole chemo process has me intrigued, and as the recommendation goes to be the informed patient (or wife), I'm back at the research again.  Everything I read talks about the application of chemotherapy agents, yet I do not find what is actually used.  Well there is good reason for that, as there is some controversy within the interventional radiology community on which one works best.  

The most complete information I found is located on Medscape at http://www.medscape.com/viewarticle/474054_3.  It appears that poppyseed oil is the reigning suspension medium, and a drug cocktail is most likely used to treat the tumor, instead of selecting just one type of chemical. Continuing to read various articles, the benefits of localized chemo show that concentrations of the drugs direct to the cancer are 100 times more powerful with direct exposure than traditional drug therapy by mouth or IV that are diluted by blood and impact the entire body. 

In reading an informational TACE article in cancer news from the University of Florida (http://www.ufscc.ufl.edu/Patient/cancernews.aspx?section=cancernews&id=17939), they explain "Following intra-arterial chemotherapy administration, a small gelatin sponge is placed into the hepatic artery to block blood flow to the cancer. This reduces the volume of blood in the cancer, which allows the chemotherapy agent to spread throughout the cancer and remain there in sufficient concentrations."  Checking again, the article posted in Google's Knol says that gelfoam is used in cutting off the blood supply to the tumor, and the Medscape article agrees, and goes on to say recanalization occurring in approximately 2 weeks  which means that its not a permanent sponge left behind as I'd read elsewhere.  That is a relief!

Another question we have had bugging us is that all the studies and the transplant boards talk about 1 year survival rates.  What then?  It turns out there was a study earlier this year performed on patients outside the traditional liver cancer transplant (T2) criteria that followed patients for 4 years.  I quickly associated our case as we were originally told 5, possibly 6 lesions, and even the last read by the university called out 4 lesions one of which is 3.2cm, which still is outside T2 (one < 5cm or up to 3 < 3cm).

2008: Yao Francis Y; Kerlan Robert K; Hirose Ryutaro; Davern Timothy J; Bass Nathan M; Feng Sandy; Peters Marion; Terrault Norah; Freise Chris E; Ascher ancy L; Roberts John P
Excellent outcome following down-staging of hepatocellular carcinoma prior to liver transplantation: an intention-to-treat analysis.
Hepatology (Baltimore, Md.) 2008;48(3):819-27.

We previously reported encouraging results of down-staging of hepatocellular carcinoma (HCC) to meet conventional T2 criteria (one lesion 2-5 cm or two to three lesions <3 cm) for orthotopic liver transplantation (OLT) in 30 patients as a test of concept. In this ongoing prospective study, we analyzed longer-term outcome data on HCC down-staging in a larger cohort of 61 patients with tumor stage exceeding T2 criteria who were enrolled between June 2002 and January 2007. Eligibility criteria for down-staging included: (1) one lesion >5 cm and up to 8 cm; (2) two to three lesions with at least one lesion >3 cm and not exceeding 5 cm, with total tumor diameter up to 8 cm; or (3) four to five lesions with none >3 cm, with total tumor diameter up to 8 cm. A minimum observation period of 3 months after down-staging was required before OLT. Tumor down-staging was successful in 43 patients (70.5%). Thirty-five patients (57.4%) had received OLT, including two who had undergone live-donor liver transplantation. Treatment failure was observed in 18 patients (29.5%), primarily due to tumor progression. In the explant of 35 patients who underwent OLT, 13 had complete tumor necrosis, 17 met T2 criteria, and five exceeded T2 criteria. The Kaplan-Meier intention-to-treat survival at 1 and 4 years after down-staging were 87.5% and 69.3%, respectively. The 1-year and 4-year posttransplantation survival rates were 96.2% and 92.1%, respectively. No patient had HCC recurrence after a median posttransplantation follow-up of 25 months. The only factor predicting treatment failure was pretreatment alpha-fetoprotein >1,000 ng/mL. CONCLUSION: Successful down-staging of HCC can be achieved in the majority of carefully selected patients and is associated with excellent posttransplantation outcome.  

One by one, we are knocking down our questions, and after filing the medical records from this last visit I'm signing off to get some work done around the house.

When looking back at our 52 hours in the hospital, it really wasn't as bad as we'd expected.  Nausea only occurred a couple times, any pain was treated quickly and the entire staff from nurses to interns to the world-class surgeons involved all treated us with the utmost of respect and kindness.  

On the way home I asked "what do you remember?"  He said he remembers kissing me goodbye when he was laying on the treatment table.  He remembers that it really hurt at one point.  He remembers a guy with full force nearly standing on top of him, full body weight, arms straight and pressing down on his groin (stabilizing the hematoma).  He remembers the recovery room, and getting sick.  But of the procedure?  Not much.

At home again, I'm being accused of trying to 'feed him drugs' by keeping on the Norco every 6 hours, but I remember the Hep C treatment too well when he was hurting all over, letting pain go too far before taking something can be nearly unbearable as well.  I see as he walked out of the bathroom that the doctor's were spot on again, the hematoma has left a very large site of bruising across the groin, like a horse wearing combat boots kicked him but he says its not too bad.  Sigh, OK big boy, no meds for you?  No worries, but they'll be close by.

Its now that I realize just how tired I am, even though the recliner in the room was pretty comfortable, it wasn't like being at home.  I attended afternoon conference calls and caught on work.  There will be more to do over the weekend to make sure nothing was dropped while I was out.  Quietly I say a prayer of thanks that we have a break for 6 weeks before the return.  

Its amazing to me how many people have reached out to send their love, their strength, positive energy and prayers to us, for this we are truly blessed and I say my own prayer of thanks.  That reminds me, I hope we're able to schedule the procedure the week before, and not the week of, the thanksgiving holiday.  This year will be truly different, indeed.

In all the research I did about the procedure, it was cited to be very rare that a patient stays more than one night, but here we are.  Apparently the blood chemistry isn't where they want it to be, blood oxygen saturation kept dropping to the point where the monitor above my head would send out an alarm and release was stalled until the level could be maintained. 

We also had an issue where the blood pressure monitor top number (systolic) was still elevated to the 185-205 range, and the normal read is more like 120-150.  Figuring this may be due to the level of pain medication administered over the past day, the transition was made from Diloted IV to Norco by mouth.  There was also a number of times my love complained of pain on his right side where the procedure was performed, they took a chest xray as a precaution. 

The good news is that one of the IR team visited with us today, and confirmed the largest lesion in the right lobe had been successfully treated.  In 6 weeks we'll be back for the 2nd tumor confirmed in the left lobe, and at that time they'll use the angio to more completely review the liver.  Good news, there is a chance that only 2 cancerous tumors to be treated exist at this time as the other suspicious areas are still unconfirmed.  They couldn't confirm during this procedure as the hematoma was too high a concern.

Wierd, we've not left and we're already scheduling a return visit, guess it is kindof like a vacation?

The nurse practitioner led me back to the recovery area with a warning and instructions.  My husband had a large hematoma in his groin area where there had been internal bleeding.  The doctors had stabilized the condition, but he was to remain completely flat and not move, especially not moving the right leg or lifting his head until he was cleared to do so. 

Unlike one gentlemen I saw, my guy didn't look like a grinning guy returning from a trip to the happy juice factory.  He was knocked out, confused and started to stress when we told him not to move.  The room was very busy with several beds lined up, so to be with him I had to stand between stations, with my hand touching his face, his hair or his chest, talking to him while I watched all the activity.

The attending Interventional Radiologist came to get me, and I was informed that sedation had not worked well in this case.   My hubby is a pretty big guy, and he started becoming combative or thrashing during the procedure.  The doctor advised me that he was speaking to me as I would need to remember when scheduling his next procedure to make sure they knew to schedule general anesthesiology.  At one time, he said, they had to consider abandoning the procedure if there was any further threat to patient safety, and they were pleased to have recovered well enough to continue this time.  I admitted that normally he asks to be completely knocked out, but the last 2 biopsy and colonoscopy had been concious sedation without incident. 

Bottom line, there had been difficulty with the catheter, exacerbated by the patient's resistance, and the resulting hematoma would be a large bruised and tender area that would need another sonogram in the morning.  However, they were very successful in locating and embolizing the largest tumor in the right lobe.  The nurses were checking for pulse in the right foot and monitoring vitals, and signs of a hardened lump in the area every 15 minutes.

The trip to the recovery room lasted several hours, so I took occasional breaks while my hubby slept.  There was a trip to the radiology records to get the procedure films on CD, trips outside to make phone calls.  I spent more time in the Family waiting area, yet was in no mood to talk so I read or caught up on email since I had my laptop with me.  I had seen some of the other women in the recovery area, but as seasoned vetrans of the Radiology group, they appeared far more relaxed while they waited to be told to collect their husbands and bring them home.

It was nearly 6:00pm before we were told that my husband was stable enough to move downstairs to the short-stay unit.  He had been nauseous a few times, and received pain medicine several times.  When we got to the short-stay, he was give a more comfortable bed, and the nurse set him up with some water and jello to try.  I was given instructions on the LazyBoy recliner and assured that if I stay the night they would provide me with pillow, sheets and blanket.  Although they gave him a dinner tray, I headed off to the caf to make a plain sandwich to share, get the overnight bag I'd packed and make a couple calls.

The night was a restless one, with me assisting  occasionally on keeping him comfortable and when he had to urinate.  His blood pressure was elevated, and he complained of pain several times.  We weren't sure if the pain was hartburn from eating lying down, or if it was due to the procedure, and despite burping or passing gas, only additional IV drugs could get the pain to abate.  The staff was wonderful, and tried not to disturb me when I'd fallen asleep and my husband wanted to try and use the bathroom.  He was able to get up and move around more freely because the hematoma had not hardened or swoolen up further. 

In the morning the day staff took over, and I headed out for coffee and a sweet roll for my sweetie.  Between hours of sitting together in our little area surrounded by a privacy curtain, I made it back to the records office to get blood workup results and dictation from all of the doctors.  This time, laptop in hand, I was able to show my husband the ball of tumor visible with the contrast, and what looked like a wire heading up the artery feeding it.  I read him the final results, and then went through the dictation from  our previous office visit.  We reconfirmed that successful chemo was needed to 'destage' us to a level to be considered eligable for transplant.

Ready for discharge we wait.  Although the ultrasound confirmed the hematoma had no change from the previous day (no problems), the nurses have asked that he be seen by an attending physician before they agree to release.  Currently, the blood pressure is still elevated, and without the oxygen feed his saturation rate drops to 90, setting off the alarm above my head.  He's bored, and snoozing, asking for the nurse.  Time for me to sign off.

When we arrived at the university hospital, we were early at 6:45.  Admitting was able to bring us in within minutes of signing in at the desk, and we were given a hospital map and told to report to Radiology.  We checked in there, and were told that we were scheduled for 10:00, and no preliminary work was called out for us.  They had the blood workup results on file, and nothing indicated the need for a hydrating IV, so we got to sit, and wait, stomachs grumbling since we had left a few hours earlier and had been fasting (no food or drink) since 8:00 the previous night, doctor's orders.

The first step was to get my husband dressed in his hospital gown with a robe and pants, then they led both of us to the procedure room.  There were to procedure rooms joined in the middle by a control room with windows between for the Xray techs.  Each procedure room was really impressive, with a big C shaped scan and several TV monitors mounted above the patient table.  The anesthesiologist went through a patient survey while the room techs were preparing two carts with a variety of devices, drapes etc.  The mood was very lighthearted, and we met the attending doctor and another assisting that I assumed to be an intern he was so young.

I was advised the procedure normally lasts an hour to an hour and a half once patient prep was completed, so as soon as I was asked to leave I headed out to the cafateria.  A few phone calls, croissant and coffe later I headed back up to Radiology.  There I was told that there was no ETA, and they would call me in the family waiting area. 

The waiting room was an experience.  Chatting up the lady next to me, I found her husband had received a transplant as a Stage 1 candidate since he had internal organ failure after a ruptured appendix, dificult infection and shut-down after large doses of antibiotic were used in another facility.  She and her daughters had watched while he was on a countdown survival, with an estimate of life ending in just a few days when a donor match was located.

Another woman appeared and sat in our little circle on a footstool, her husband had Hepatitis B with aggressive liver cancer, treated by another facility with chemo-embolism that had gone bad, severely damaging the femoral artery.  The referral to the university took several months, and on their first visit she was given the news that her husband was off the list for too many tumors and damage.  Not willing to accept an estimate of months to live they travelled to Singapore where a family member was a donor for a living transplant.  Back in the states with complications, both transplant facilities advised that he needed another transplant, but would be put on the list again after at least one year tumor free to confirm the cancer had been eradicated.  We cried together as she said "I feel like I should have push harder to get him in here quicker"

Checking my watch, it had been 2 hours and still had no word about my husband, and this story shook me up.  This is when I heard the third woman telling of her daughter's brain cancer, an active teacher that loved her life, she was a 13-month survivor of the same disease that Ted Kennedy was in treatment for.  Her participation in a study had been cancelled when they found another growth, so today was a series of tests to determine the extent of treatment success or failure.  Across the room was another couple that were here for follow-up, they had all played cards together in the family waiting just a year ago, and had not seen each other between visits.  The daughter appeared to gather her belongings and head up to the doctor's office.  She was about my age, and looked very strong and heathly, with close cropped hair and a quick smile to the group of 'new friends' her mother had made.

At three hours, I started to press for a status of the procedure, and a few minutes later the nurse came to get me.  As it turned out, I would be with my new friends off and on for several more hours.

 I read the letter again "You have been scheduled for chemo-embolization.  Your appointment time is 10:00am, please arrive at 7:00 and check in with admitting on the 1st floor.  If you are unable to keep this appointment, or if you have any questions, please feel free to contact our office".  

Questions, yes, there are lots of questions but none that I'll be asking the nurse practitioners tonight.  Instead, I find a new site, one with all the details as to what to expect.  Of course, I'll not be in the room, I'll have to stand by as they wheel my husband away at some point.  So what will happen in there?

I found some answers:  The equipment typically used for this examination consists of a radiographic table, an x-ray tube and a television-like monitor that is located in the examining room or in a nearby room. When used for viewing images in real time (called fluoroscopy), the image intensifier (which converts x-rays into a video image) is suspended over a table on which the patient lies. When used for taking still pictures, a drawer under the table holds the x-ray film or image recording plate that captures the images.

The whole procedure, what to expect start to finish is posted, I found it at http://www.radiologyinfo.org/en/info.cfm?pg=chemoembol&bhcp=1.  

Funny, I've been told by a couple people that have undergone Xray based procedures about a rush, a warm feeling throughout the body:  As the contrast material passes through your body, you may get a warm feeling.  Yup, that explains it.

And what should I expect when he returns to the room after the procedure?  Something really special called post-embolization syndrome.  Other than the catchy name, it appears that I get to expect him to be in pain, have a fever, and complain of nausea.  This could last for up to two weeks, along with fatigue and loss of appetite, all considered normal.  Of course, any sudden changes, elevated fever, pain or other changes should be reported to the doctor.   Humh, after the interferon & ribivarin reactions he had over 40+ weeks, this is a cakewalk.

Ah, and what of the results?  We should know technically if the procedure was a success when completed the same day, hopefully when the doctor comes to visit after clinic. And just in case:  In about two-thirds of cases treated, chemoembolization can stop liver tumors from growing or cause them to shrink. This benefit lasts for an average of 10 to 14 months, depending upon the type of tumor, and usually can be repeated if the cancer starts to grow again.

Countdown- in 24 hours there will be no more eating or drinking until the procedure is over.