Thursday, May 29, 2014

How Can This Be?

Jake passed away on May 11, 2014. Mother's Day. Time of death was called at 3:24am, when the hospice nurse came. In reality, it was more like 2:08am. I know because I was holding his hand as he took his last breath.

I know a lot of you are wondering what had happened after his last post, so I wanted to be able to share that with you. We were told to expect extreme fatigue following his last chemo treatment. On the evening of Monday, May 5th, Jake started falling asleep in the middle of sentences. By Tuesday, he couldn't stay awake to eat. When I called our PA, she told me he was experiencing hepatic encephalopathy. His liver was shutting down; the toxins were building up in his blood and were affecting his brain. If the toxins could be flushed out of his body via laxatives, he would improve.

By Wednesday morning, nothing had changed, so the oncologist told me to take him to the ER. Once there, Jake was admitted to the hospital with renal failure. Pretty much all of the liquid in his body was going straight to his abdomen, bypassing his kidneys and draining them dry. We considered dialysis, but were advised that it was really too aggressive a treatment for his condition.

During the next few days, there were lots of tests and procedures. He had his drainage port put in, but had to have two rounds of platelets before that could occur. During this time, he tried hard to be awake for the important discussions, and for his visitors. In the words of one of his closest friends, "Jake collects friends." From the time we arrived at the hospital on Wednesday until he took his last breath, there was always someone by his side.

In every discussion we had with hospital staff, Jake was adamant about his desire to go home. (He hadn't even wanted to be admitted in the first place.) On the morning of Saturday, May 10th, he was discharged from the hospital under hospice care. His blood pressure had been getting gradually lower for several weeks, so due to concerns about him passing out, he went home via hospital transport (aka ambulance).  Over the next 16 hours, he did his best to make conversation with everyone who came to see him, even cracking jokes on several occasions. His eyes still lit up when I walked in the room. Some of the last words he said to me were, "I love you... unabashedly."

At 12:45am, I went to bed, leaving Jake under the watchful eye of several of his cousins. I was sure his life would continue for at least a few more days. I expected him to slip into a coma at some point, as all of his organs continued to shut down and he had denied life-saving measures. At 1:45am, I was awoken by the words, "Jake needs you." I rushed downstairs and held his hand as he finished his journey on this earth. I later found out a most extraordinary story that I have been debating about sharing…

On Monday the 5th, our pastor came to visit with Jake. Jake had confided in him that he was scared about what was next. Jake also told him that if he could find a way to tell us he could hear us on the other side, he would do it. When Jake passed, I was told by his cousin, who is a respiratory therapist, that had it been in a hospital setting, she would have called the time of death when her son went up the stairs to get me. Jake had stopped breathing. As I came down the stairs and he heard my voice, Jake took a huge breath and looked straight into my eyes. I honestly believe he heard my voice from "the other side" and wanted us all to know that he can hear us. He always was a talker; now he has to sit and listen.

My husband was such a courageous fighter. He fought until the very end. He wasn't ready to be finished with chemo, even though his liver was. He wasn't ready to cancel our vacation, even though his body was. He wasn't ready for his life to be over. None of us were. But then, how can one ever really be ready for such finality?

My husband was truly one of the most amazing people I have ever met. We will celebrate his life at an After Party, just as he wanted. I don't have any details yet, mostly because I haven't the heart to plan them.

Life is short. Sometimes unbearably so. Make sure the people you love know that you love them.


Saturday, May 3, 2014

A New Drug, More Bad News and Hope for Comfort

Two nights ago we were eating dinner at the table and Myah looks at me and points out a fact that I've been trying to avoid.  She said, "Dad, your eyes are yellow."  In truth, they are getting a little yellow but aren't yet yolk color yet.  It is a move in the wrong direction however.

So here are the updates from the last treatment...last time you tuned in we were looking at trying a new drug, evaluating different surgeries and making a bunch of decisions.

Well...the good news is, I don't have as many decisions to make.  :)  We had our consultation with the surgeon on Wed of this week.  You know, you never really get used to the look that the Dr gives you when he delivers bad news.  It's sort of sympathy, but it's more uncomfortable silence, knowing that he has another patient waiting in another room.  And then they leave.  BUT....I'm getting ahead of myself.  We discussed all of the surgical options available:

1) Cut me open and pick out all of the abdominal tumors, then fill me with hot chemo and sew me up, hoping that the chemo takes care of what got left behind.  VERDICT - Invasive procedure with a lot of chemo that my liver most likely wouldn't tolerate.  I'm not a good candidate.  Too much risk for too little reward.

2) Same as above but as a laproscopic procedure.  VERDICT - Less invasive but with the same chemo issues at the one above.  I'm not a good candidate.  Too much risk for too little reward.

3) Hepatic Arterial Infusion pump (HAI).  This procedure would put a pump in my abdomen with a direct line to my liver.  I would get 2 week chemo infusions followed by 2 weeks of rest.  VERDICT - I think that you can all see the trend here...the disease in my liver is simply too much at this time to allow the surgeon to accept any risk in this endeavor.  I even asked that if we went home and decided to take the risks would surgery still be is NOT any kind of an option.  Then what are my options?  They really boil down to just one.  Hope this new drug works.  The first time I got drained they took 3 liters, the second time they took 4 liters and this last Thursday they took 5 liters.  Clearly not a trend pattern you'd like to see pretty much anywhere.  I have another treatment on the 16th of May and we will keep an eye on it after that.

A point of good news is that before my next treatment I'm supposed to be fitted with a tap that will let me drain myself vs going in to the cancer center once a week.  That will keep me much more comfortable as I wait for more news.

A point of not so good news is what really drives the reality of all of this home.  As I feel the liquid drain from my gut, my Dr says that we should talk about something that we haven't brought up yet.  If this drug doesn't work and my condition doesn't improve, he would like to start talking about hospice.  I can't tell you how many times I've been hit in the face with something that I've been expecting, but it still came as a complete surprise when the point of impact came.  That's exactly what happened when my Dr said hospice.

So, now all of the preparation that we did when I was diagnosed becomes very relevant.  And there is still so much to do.  One of the most immediate things to do is to get the ubiquitous second opinion, so we've started the appointment process with MD Anderson.  Logistically it will most likely happen in June.  We have a family vacation scheduled to Washington DC at the end of May and it is vitally important for me to share that experience with my daughter. This becomes more of a concern the weaker I become.  I should be able to eat more and have more energy once we get the permanent drainage tap in.  More to come on that.

I'm also starting to plan my afterparty. will be a party.  People should have fun, share stories, eat wings and drink good beer.  I still don't know the details on that...I suppose it depends on how many people would be willing to travel to get there.  If there aren't many then it might be just a week or two after my "transition".  If more want to come, we would have it about a month afterwards to allow people to arrange travel.

Speaking of ceremonies, tonight we had a Lakota/Sioux sage ceremony.  I have never been through one of these and tonight it was in my honor.  I am so humbled that this was done for me.  Whether it is the Creator or God, the prayers are the same and the power of the those prayers is just as magnified.  I definitely felt the divine flow through me and fill me with awe and peace.  I can't put into words how special it was to have a good friend of the family request this for me.

Find some peace tonight.  However you choose to do that.  Find some and then share it with someone you love. 


Thursday, April 24, 2014

A Rough Week

Few things in this life have been harder than telling my mother that I am going to die.

That was the message that Tami and I delivered to my parents today after another abdominal drain and extensive consultation with my doctor.  Things aren't going my way in the cancer department lately.  We learned this week that my time in the physical realm is shorter than we thought.  Potentially much shorter.  Needless to say, it's been a rough week for both of us.

Last week I had 3 liters of fluid drained from my abdomen.  This fluid is called ascites.  Normally it is caused by a failing liver.  But sometimes it can be a sign of something worse.  Well, it doesn't take a rocket scientist to look at my liver numbers and functions and make the assumption that my particular ascites was being brought on by poor liver function.  So we started treating it from that perspective.  We also had a routine sample sent to pathology to look for anything more nefarious.

On Tuesday we were given the news that my ascites was malignant.  This isn't good news.  In fact, it's about the worst news we could've gotten.  If you look up malignant ascites you see words like "dire" and "extremely poor" when it comes to prognosis and outlook.  When you look at the numbers, the news gets even worse (even though I don't put much stock in numbers...) with a mean survival rate of about 4 months.  Unfortunately it doesn't react well to chemo and's pretty damn nasty.

Options?  Not many.  We are looking into a new chemo drug that would give us a possible chance with the ascites, but is much less effective on my primary cancer.  Oh yeah...and insurance has an annoying issue of denying it's coverage.  I've applied for financial assistance from the drug company but I have little chance of being approved.  So, for the low low price of $12,000 every two weeks I could roll the dice.  We're hoping that the insurance just covers it and I don't have to make that decision. 

Another option is an interesting one...although a bit terrifying.  It would involve 2 different surgeries conducted back to back (10 or more hours on the operating table).  Interestingly enough, this might be the first time both surgeries are conducted at the same time anywhere in the world. 

The first is a relatively low risk surgery that would be focused on the ascites.  Basically, I would be split open right down the middle and the surgeons would try to find every bit of  tumor cell in my abdomen (none in the liver, just the abdominal cavity).  I would then be "filled" with hot water and a drug mixture that would be aimed at slowing down the ascites or making it go away for a while.  The second surgery would  involve installing an Hepatic Arterial Infusion (HAI) pump.  This is basically a super concentrated chemo treatment that lasts 2 weeks at a time and is focused on the liver specifically.  The concern here is that my liver...well...let's face it; it's not in the best shape right now.  The surgeon is currently very concerned about the idea of this surgery in my condition.  Unlike the first part, this part is high risk, with a possibility of me a) not making it off the table or b) dying within 30 days of the surgery due to liver failure or complications.

Kind of a tough choice...don't do it and look at planning my going away party in a few months...or (assuming that the surgeon agrees to do it) go for broke and potentially depart even sooner with no guarantee of prolonged lifespan.  We are looking at a 3rd option though.  When we meet with the surgeon next week we are going to ask if there is any benefit to just doing the first surgery to give a little more time to fight the ascites.  The issue with that approach is that it is a very invasive surgery and the recovery time will be extensive.  All the while I will have to suspend chemo.  That's the benefit of combining both surgeries.  The chemo to my liver would start almost immediately because it's already inserted in my abdomen.  

Of course there is always the option to simply stop treatment and spend the last few months of my life just managing pain and symptoms while I let nature take it's course.  I'm not ready to make that call right now.  I still have a little fight left in me. 

I know many of you will have questions, or want to visit.  Right now, Tami and I need some time to process everything.  If you call and we don't answer, we may be at an appointment or we may be just not answering for a bit.  Just know that we want to talk to you but may have to call you back.  As far as visits go, just be prepared to have plans change.  So many things are up in the air right now that I can't even plan the next 48 hours with any certainty. 

You will also see me making light of this situation, which may seem morbid and inappropriate...but it's how I cope and I intend to smile as much as humanly possible for the next few months.  I would ask you to smile as well.  Nothing helps you feel better than a smile sometimes.  If you need to find a reason to smile just remember how full and happy all you have helped make my life.  That's what helps me smile. 

I'm not stopping the blog.  I want to keep all of you informed and it really helps me deal with all of this.  It's also going to be a place where I can ruminate on good times and bad along with providing status updates.

After you read this I want you to find something to read/watch/otherwise experience that makes you laugh for at least five minutes straight.  And then show it to someone else.  :)

I love you all.


Friday, April 18, 2014

Treatment #11 - Or "How to lose 10 lbs in 20 minutes"

I've been unable to blog for the last 2 weeks because of some very intense physical and emotional pain.  Things have been going downhill for a bit now, with confusing numbers and new challenges that seem insurmountable at times.  While things with my cancer seem to be improving, things with my liver in general seem to be spiraling downward with the biggest issues being in the last 2 weeks. 

Itchy and Scratchy
For the last 3-4 weeks I've had an off and on again full body rash.  We've looked at several different causes for this with no luck.  We also have yet to find a good long term source of relief.  Of all the lotions and salves and balms, I get about 20 minutes of itch relief from calamine lotion.  20 minutes isn't a long time when everything itches for days...yes...everything.  And that's all I'll say about that.

Liquid Belly
Over the same period I've had an increasingly large abdomen, sometimes growing by the day.  In the beginning I thought it was gas pain, but as it kept growing and becoming more and more painful, we started suspecting something else.  2 weeks ago I had a CT scan that revealed fluid in my abdomen (otherwise known as ascites).  Now, we all have some fluid in our abdomen that acts as a natural lubricant for our internal organs, but not in the amounts that can been seen on a CT scan.  Just yesterday (2 weeks later) I had an ultrasound to determine how much fluid was present.  This led to an immediate paracentesis (draining of the fluid) that resulted in the removal of 3 liters of fluid from my abdomen over 20 minutes.  That means a 10 pound weight loss in less time than it takes to watch a news broadcast.  And they didn't take it all...and it's coming back already. 

This condition impacts every detail of my day.  I can't eat because of the pressure in my abdomen.  I can't sleep because every horizontal position results in painful pressure.  It's possible that the cause of my ascites (a failing liver or blocked bile duct) is also the cause of my itchiness and my restroom issues (I'm having real issues urinating now, with a typical session taking around 5 minutes to finish and only happening twice a day no matter how much liquid I consume.).  The direct cause of the ascites is an elevated bilirubin level.  Both direct and total bilirubin numbers have been high in my labs over the last 2 measurements (4 weeks).  We don't know why my bilirubin levels are high yet, but if they continue to increase at the levels we are seeing, I can expect to see jaundice in the next couple of weeks.  First the whites of my eyes will yellow and then my skin will follow.  My ascites will also continue.  If I have to have it drained too often, they will install a tap in my abdomen that I have to use to drain my abdomen at home on an ongoing basis. 

What does it all mean?

Who the hell knows at this point.  From a cancer perspective, I'm still moving in the right direction with a new lower CEA number of 86.8 and encouraging scan results.  From a weight loss perspective, I've been living with a red herring.  The only thing keeping my weight stabilized was the growing subterranean reservoir in my gut.  Even with a little fluid still stuck down there I'm at a weight I haven't seen since the early '90s.  So the weight loss continues and presents an issue when we look at what dietary restrictions pop up for treating my liver. 

My Dr is thinking that a possibility for the liver issues is drug toxicity.  This means that we cut out another one of my chemo drugs today and added the other back in.  So the zaltrap is back in and the irinotecan is out.  The benefit of this is that today has been a much better chemo day without all of the confusion and nausea.  The bad part is that it is a shot in the dark that we have to wait two weeks to see any results from.

None of this is good for my frame of mind.  Constant pain and being locked in a skin suit made of old rough wool wears on a guy.  I put a smile on my face as much as I can, but it gets harder with each passing day.  Add to that the fact that I'm still facing multiple things that can kill me pretty soon...and the general feeling around the house is less than positive at times.  But we do try to add some perspective and focus on the task at hand.  Sometimes it's healthy to stop looking at the big picture for a limited time.  We'll just take each issue as it comes up and fight like hell to overcome adversity one step at a time.

When the weird looking yellow guy sits next you in a meeting or stands behind you in line at the grocery store, don't worry about it.  He's just adding a little color to the room.  ;)


Sunday, April 6, 2014

Treatment #10 and some mixed news

We've been through enough treatments now that the nurses know our names and we're starting to see other patients that we recognize and talk to from time to time.  Double digits...#10.  Before I get too far into the treatment update, I'll start with our Dr update after a host of CT and MRI scans.  If you're following my on FB, you'll have already seen a preview of this.

Scan results:

CT - No movement up into my lungs (yay), no big difference in my primary tumor (yay) and it looks like there may be slight shrinkage of the a couple tumors in my liver (double yay!!).  It also shows that my abdomen is filling up with fluid.  Not only is this troubling from a liver function perspective, but it is pretty uncomfortable.  If it continues we may have to look at draining it from time to time.   Sounds like fun. 

MRI - My brain hole is healthy and cancer free.  Unfortunately there isn't a good explanation for my headaches yet so I'm getting a referral to an ENT Doc.  Hopefully something tangible will come out of that meeting.  They've been getting bad enough to keep me from driving at times.

Dr Update:

For the past week I've had a rash all over my body that has really impacted my sleep and just been a general pain in the ass.  As of yet we have nothing to relate it back to so we are starting with the medications that I've had reactions to in the past.  In this case the Doc focused on one of my chemo drugs...Zaltrap.  We decided to skip the Zaltrap this treatment, which made me happy because I've had a bad reaction to it every time I get it.  She also put me on a tapering dose of steroids to see if I could knock the rash down quickly.  We'll see how those work.

The other issue that we brought up to the Doc was the reaction that I'm having to my blood thinner injections.  My entire stomach is covered in erythema nodosum, which looks like a rash but isn't.  It's under the skin and goes away in 3-6 weeks IF you stop doing what's causing it.  Unfortunately I can't stop my injections so we have to start looking for a new place to do them.  And since it won't be in a spot that I can reach, Tami is going to be picking up a new injections.  We will start in the arms in the next few days and see if the erythema shows up there as well.

My weight is continuing to stay even which is wonderful news.  The challenge of finding and choosing food that I can actually eat still plagues me on a daily basis.  Friday afternoon, I wanted pizza so we stopped and picked up a couple of pies.  I had one slice and immediately almost lost it to the sink.  I became very nauseous for the rest of the day and finally gave up my dinner just before bedtime.  So much for picking the right food that day.  :(  But last night we had success.  (I attribute some of this win to the steroids that I'm on.)  I wanted wings for some reason, so we ordered wings (garlic parm and mild original...because I'm a heat wussy now) and I ate them!  I haven't had an order of wings since before I was diagnosed.  It's the little things.  

So, most of the news this weekend has been positive.  Now to the not so hot news.  My CEA numbers are on the rise again.  I had dropped to 89.1 and was looking for another drop from there.  Instead I was greeted with a rise to 112.8.  That's higher than the last 2 measurements and is a real hit to the momentum.  My liver numbers are also on the rise, which isn't the best sign.  Nothing dangerous yet, but it does point to something not going quite right.  So these are the things that we need to watch.

Take some time this week to really focus on something or someone you love.  And don't forget to tell the people that you care about how much you appreciate them. 

I appreciate everyone who follows this blog and sends their thoughts and prayers our way.  We sure do need them. 


Wednesday, April 2, 2014


I'm tired...
Tired of feeling spent after just half a day at work,
Tired of not sleeping through a single night,
Tired of daily bloody noses,
Tired of food being my enemy instead of the friend I once knew,
Tired of the rash that's taken over my stomach and is slowly crawling up my chest,
Tired of the darkness that invades the good times and tries to subvert hope and light,
Tired of pity,
Tired of falling over because my equilibrium is shot,
Tired of ending up on the floor doubled over in pain (like this morning) that won't go away,
Tired of Chemo,
Tired of the tears,
Tired of the drugs,
I'm just so tired...

This afternoon I slept for a couple of hours after I (thankfully) made it home from work.  I got almost no sleep last night due to major abdominal pain and cramping.  Unfortunately, each time I woke up and thought..."I should take something for this...", I would fall asleep again.  It forced me to go in to work late this morning and move some things around.  Thankfully, the short time I was at work was productive, but it was short lived.

The rash on my stomach is an allergic reaction to my blood thinner injections.  It's listed in the documentation for the drug and should be mostly harmless...but incredibly frustrating.  Almost all of my injection site options are now covered by a thick, pink continent that itches really really badly.  And worst of's taken up residence in my belly button.  Oh the humanity!  Now we have to find new injection spots where Tami will have to handle giving me the shots.

We have multiple scans tomorrow and chemo #10 on Friday.  I start the day off with an MRI then, after a couple of hours to fast and drink water, I have two different CT scans.  I'm not a huge fan of IVs now that I have my port, but I don't want to add an extra day to the weekend that my port IS accessed, so I'll have to make due.  I get the results of these scan on Friday when I see the Dr before my chemo.  I'm hoping beyond hope that I don't have yet another reaction to the Zaltrap.  We'll see how it goes.

In good news...I haven't lost any more weight.  This is something that I should be yelling from the rafters while jumping up and down.  The fact is...I'm just not that excited right now.  I'm too tired to smile and pat myself on the back and celebrate.  All I want to do is go to bed and wait for my gut to stop hurting. 

*sigh*  This isn't really a positive note, but it reflects how I've been doing over the past couple of weeks.  Ups and downs, with what seems like more downs than the other. 

Tomorrow is a new day.  It really is a new opportunity to make it a great day.  I'll try to keep that in mind. 


Saturday, March 22, 2014

Another reaction and encouraging numbers

Another treatment in process (#9) and another weekend of feeling like crap.  Not a whole lot to look forward to, but a necessary part of the journey.  Yesterday was a long day in the infusion suite.  It all started with a port access and labs, followed by a visit with our Physician's Assistant.  We asked questions about my headaches and the growing rashes on my stomach at each of my Lovenox injection sites.  My headaches are spurring an appointment for an MRI to make sure nothing has moved into my brain.  We'll get those results in a couple of weeks.  As for my red, splotchy stomach…we're trying a no bandaid approach.  If that doesn't work, we'll see what the next step is.  All of my liver numbers are good and my blood work is normal (platelets, white count etc.).  So that's all good news.

Then we headed upstairs to the infusion suite where things got a bit dicey after a routine start to the treatment.  Again, it was the new drug Zaltrap.  We had the nurse start it out at a slower rate as we had been instructed to when I had my last reaction and almost crashed.  Sure enough, even at a slower rate I had another reaction.  This one was caught early and wasn't nearly as bad, but I still got boosted up with steroids and Benadryl to stop it and stabilize me.  After an hour long nap we started the drug again at an even slower rate.  That seemed to work.  We'll see how it works out next time.

In other (and better) news I have two really good numbers to report.  My weight and CEA.  I actually GAINED a pound between last treatment and yesterday!  WOOOOOOO HOOOOOOO!  As you know, this has been a huge struggle for me since this entire process began.  With the diet changes and the minimal changes in exercise that I've made, I've seen tangible differences.  It's still incredibly difficult to eat as much and as frequently as I should, but I push through the pain and keep going.  So…hopefully we see the trend continue.

The other good number is my CEA cancer marker.  It's gone down 17 points in the last 2 weeks from 106.1 to 89.1.

So we like this trend.  :)  I have a CT on Thursday and will find out the results of that the following week.  Once we get those we'll be able to see if they correlate to the CEA numbers.  Hopefully this means that we are stopping the cancer in it's tracks or maybe…just maybe making it back off a little bit. I'm hoping to see more good liver than before.  However…being a realist, I'm prepared to see progression, knowing that the CEA number can be deceiving at times.  In any case, it give me hope and sometimes that's all you need.  :)

On a closing note, my McRock'nRoll was absolutely a lifesaver in it's first real test.  A 3 hour museum tour.  Built in seat and something to lean on were indispensable.  

Always have a place to park your butt.