Progress and Progression

When I got home from the hospital last September, I created a bucket list of things that I wanted to do before the end.  The list includes enjoying a Purdue football game from the skybox, riding the Boilermaker Special into the stadium, taking my family to Disney World for the first time,  visiting my brother and Martha in Detroit, taking our boys skiing for the first time (thank you Jamie Engesser), going to Vegas with my wife for a long weekend (Bellagio), meeting Clark Howard (thanks Christa DiBiase), taking the family to San Francisco for a week, a spending a entire month in Maui (thanks Little Ben).  It's been an amazing 8 months since my release from the hospital as we have completed all except the last two on this list (and we will be checking those off shortly).  That's PROGRESS!  Now I need to update the list with additional experiences that I can use to create memories with my family.  I'm thinking maybe a Disney cruise (never been on a cruise before).  Anyhow, if you have suggestions or ideas for me drop me a note.

Now, on to the more sobering topic of my health.  I will presume that everyone reading this is aware of my diagnosis and prognosis (if not, look at my earlier blog entries for details).  My oncologist conducted a CT scan last week and the results weren't encouraging.  It suggests that my cancer may be progressing and spreading further into my body.  The doctors want to take a deeper look at the scans but they appear to indicate spreading of the cancer cells to some abdominal lymph nodes and very tiny spots in my lung (an inevitability with colon cancer), along a with substantial growth of some of the existing tumors in my liver.  In addition, there are two spots on the scan which may suggest that the cancer has moved into the bones of my back.  We can't be sure yet, but the spots are in line with where I feel the most pain. 

Given this, my oncologist has decided to end my chemo treatments for now and instead pursue what's called a "targeted therapy" called Stivarga instead.  We are hopeful that this new therapy will be more effective at slowing down and even reversing some of the progression.  Also, I must admit that I will not miss spending 7-8 hours every other Monday at the chemo infusion center sweating profusely followed by 2 days wearing an infusion pump (that I cannot shower with) and 3 days of sweating through 4-5 towels per night.  Chemo sucks!  My new regimen will be 3 pills daily...that's it!  Not sure whether it will work or not, but it will definitely improve my quality of life for the time I have left.  Whatever that may be.

My symptoms and side effects have accumulated over the past 9 months to include severe neuropathy of my feet and fingers, fatigue, severe back pain, mouth sores, severe acne, and abdominal soreness.  But as my wife likes to say "it sure beats dying!"  And she's absolutely right.  I'm on some very powerful painkillers right now and yesterday I said to my eldest son "it's a good thing that it's not 100 years ago or I would be in horrible pain".  To which my son replied "Dad, if it was 100 years ago you would be dead".  Hahaha, Evan has a knack for pointing out the obvious :)  I must admit that I've thoroughly enjoyed getting to spend so much time with the kids since going on long-term-disability.  And now that it's summer I get to spend even more time with them.  Even better, we get to spend it in places like San Francisco and Maui this summer!

Living With a Short Fuse

I haven't posted an update since shortly after my diagnosis and, needless to say, a lot has happened in the intervening months.  A lot of people are curious about details so my apologies for the long blogpost to follow.

Surgery
As I reflect on my surgery I am disappointed that I missed so many opportunities to catch the cancer before it caused my large intestine to rupture.  My annual colonoscopy was delayed by a few  months because I was switching gastroenterologists (strike ONE).  I had an MRI scheduled to happen 5 days prior to the rupture that was cancelled because I tested positive for C-DIFF (strike TWO).  I had the opportunity to be admitted to the hospital 2 days prior to the rupture (Friday), but my new gastro said that I must leave immediately in order to get to the hospital before she left for the weekend.  Given that my wife was at work and I had two kids that wasn't an option (strike THREE!).  If any one of these circumstances had been different, we would have likely found the tumor and had a planned surgery rather than an emergency ruptured bowel that spilled all kinds of filth and bacteria into my abdominal cavity (causing a level of pain that I didn't know existed).  As hard as the surgeons tried to flush my abdomen, it's impossible to get all of bacteria cleaned out.  As a result I spent two months fighting post-operative infections with IV antibiotics and multiple drains and countless CT scans & MRIs.  During that time my doctors were focused entirely on the infections and the cancer continued to grow and spread quickly.  By the time I started chemo on November 6th, the number of tumors in my liver had grown substantially and the size the existing tumors had doubled (based on a comparison with the original CTs/MRIs).  My liver had 20+ tumors ("lesions") the largest of which was about the size of a baseball.  Apparently, my cancer is very aggressive with regards to growth and spreading.  The upside is that chemo drugs work best against cell that divide quickly and mine certainly seem to be doing that!

Cancer
Once we had the post-op infections under control my wife and I went about interviewing oncologists and found an amazing doctor, Steven Szabo.  He put me on a chemo regimen called FoxFol 5-FU + Avastin that required me to have a port installed in my chest to deliver the chemo drugs.  Every other Monday I spend 7 hours in an infusion center getting the chemo drugs pumped into me and I leave with a pump that infuses me for 48 hours.  I then go back in the following Wednesday to get the pump removed.  The chemo symptoms have gotten worse over time.  Some of them are well known like nausea and fatigue, but some are bizarre like the fact that coldness on my fingertips or in my mouth/throat feels like an electric shock (kinda like a 9-volt battery on your tongue).  On January 7th, I had a PET scan that was compared against my baseline PET scan (taken prior to chemo) and we learned that my tumors are shrinking and that there has been no further spread of cancer to other parts of my body.  They expect me to be on this chemo regimen for another 3 months or so before I transition to mostly oral chemo meds.

Managing
My current symptoms consist of the chemo side-effects mentioned above plus severe back pain caused by the liver tumors pressing on the nerves in my lower back.  I've been on oxycodone for a couple months and it does a pretty good job of managing the pain usually, but takes a while to kick in once I realize I'm in pain and take one.  I've also purchased a Tempurpedic adjustable bed (split king) that allows me to adjust my position to alleviate pain without waking my wife.  For the first couple months after surgery I really struggled to eat.  I didn't eat for 22 days before and after surgery and lost about 32 pounds (which I didn't have to spare) so I'm down to about 150 lbs.  Eating more than a small snack resulted in sweating, nausea, and discomfort.  However, over the past 3 weeks or so I've been able to eat regular sized meals and have gained back about 3 pounds!  I'm on the "consume as many calories and as much food as possible" diet...which annoys everyone around me who is trying to lose or maintain their weight :)

Work
For the last 18 years my career has been a huge part of my life and my self-identity.  It provided a life that has taken us from Connecticut to Richmond to Charlottesville to NYC to Atlanta.  I work for a relatively small software company called Pivotal that was spun out of VMware and EMC.  I cannot say enough about how helpful and understanding they have been through this.  I have learned more than I care to about employment law, social security disability, short/long term disability, HIPPA, and benefits.  My employer continues to provide health insurance and long-term disability insurance during this extended absence (which they are not required to do by law).  I cannot imagine how difficult this kind of experience must be for those who must endure crushing financial hardship along with the physical and emotional toll of cancer.  I am incredibly fortunate.

Bucket List
I've had a bucket list that I created long before my cancer diagnosis which included taking my wife to Paris (check), skydiving (check), and many other things.  I've added a bunch of travel lately.  While I'm not sure that I'll be healthy enough to do everything on it, I've decided to plan it and adapt as necessary.  Our first trip was to spend 9 days over Thanksgiving driving through Indiana visiting friends and family.  I wanted to attend a Purdue football game this year (yes, I'm a glutton for punishment) and my wife was able to arrange for us to sit in the skybox during the game . She also managed to get us a ride on the Boilermaker Special train which included a ride around the stadium, then right through the gates to the south end-zone where we were escorted to the skybox.  AWESOME!  However, my kids expectations are now completely ruined because they now believe that's NORMAL :)  After new years, the family headed for 3 days of fun at Disney World.  I had to take a break each day after lunch while Kristen took the kids on a few rides without me, but overall it was fantastic.  It turns out my kids (ages 6 & 9) are thrill ride fanatics!  And with the Disney's FastPass+ system we spent less than one hour in line over the entire 3 day vacation.  Really impressive since my childhood memories of Disney are littered with standing for hours on end in blazing heat for a 2-3 minute roller coaster ride.  Already planned are trips to Detroit to see my brother, Indianapolis for the Boilermaker Ball, Winter Park for skiing, Las Vegas for just Kristen and I to get away, San Francisco with the kids, and finally Maui next summer with my cousin.  I've even considered renting an RV for a pseudo-camping trip with the family (I have no interest in the type of camping that requires me sleeping on the ground in a tent covered in mosquitos).  Needless to say, we're making the most of the time we have.

Life
As you would expect, life has been quite different for me since the surgery and diagnosis.  Without work, my days consist of doctor/chemo appointments, medical/disability administrivia, chores, naps (fatigue), and time with friends/family.  Almost everyone is aware of my situation now, but every few weeks I have someone who is not on social media reach out with "OMG, I just found out!"  When people actually see me for the first time they generally get a bit uncomfortable and there's a lot of awkward pauses as they search for words.  I've gotten used to the awkwardness and try to show them that I'm the same guy they remember, only thinner and a bit less mobile.  My closest friends/family have now gotten comfortable with the "gallows humor" that I often use these days.  One of the positive benefits of my situation is that lots of things that used to really bother me, just don't matter much anymore.  Whoever said "Don't sweat the small stuff.  It's almost all small stuff" was exactly right.

Death
I've thought a lot about death since my diagnosis.  It's such a taboo subject that people are really uncomfortable talking about (especially with someone who is terminally ill because it's not just a hypothetical topic).  Whenever I'm talking about estate planning, or my bucket list, or other aspects of planning for the inevitable I get a lot of well-intentioned "you never know, miracles happen everyday, god works in mysterious ways, you can't give up" comments.  While I'm definitely not happy about my prognosis, I have accepted the reality that the 5-year survival rate for someone in my position is less than 6% with the average being about 2 years (my oncologist thinks that I can make it 3 years based on my response to chemo).  That doesn't mean that I've "given up", it just means that I'm a pragmatist at heart and I consider every day since August 24th, 2014 to be "bonus time".  That being said, some days are harder than others.  It's a surreal feeling to know that you are approaching the finish line.  I won't say that it doesn't make me sad, it does.  Usually in the form of a few minutes of tears each day when I'm alone.  But then I hear the giggle of one of my kids or the voice of my wife in the background and I smile and quickly realize that I don't have time to sulk or feel sorry for myself.  Now is the time to live; Death will just have to wait it's damn turn ;)

The Gift

It's been a couple weeks since I went public with my health challenges in my last blog post and I've experienced the most amazing gift since that moment.  Imagine for a moment that everyone you have ever impacted or influenced in your life were to reach out at once and tell you the effect you have had on their lives.  People you haven't seen or spoken to in 35+ years sharing stories about you as a child. Friends from high school and college that haven't been a part of your life since you were students together.  Colleagues from companies past and present telling you how you have shaped their careers and sometimes their lives.  And every relative close and far sharing what you mean to them.  It's overwhelming.  It's humbling.  It's a gift.

It's so easy to get wrapped up in our day-to-day lives that you fail to recognize the impact that your life has had on those around you and thereby on your world.  It's a shame that most people will never get the gift that I have received.  Most of us will pass through life without realizing our own impact on the world.  I'm lucky.  It's a gift I will cherish for the rest of my days.

The Road Ahead

For those of you who read my previous post I must admit to you that I didn't share everything I knew about my condition when I wrote it.  There was a very important piece of information that I decided not to share with the world until I could share it with my children after I was released from the hospital.

"Terminal".  It's such a devastating word.  One I hope you never hear.

I awoke momentarily in the ICU (intensive care unit) out of the narcotic induced haze and overheard a doctor in my room use the word "cancer".  I was too loopy to see anything and in too much pain to respond in any way... but I heard it distinctly before I fell back into my narcotic induced sleep.  It would be two days before anyone used that word in my presence again.  It was a nurse who asked me the simple question "Have any of the doctors actually shared your diagnosis with you yet?"  I responded that I had overheard the word cancer and she confirmed it for me.  I asked "Terminal?" and she nodded.

While this is the 3rd time in my life I have been diagnosed with an incurable disease (Crohns & PSC previously), nothing could prepare me for the phrase "terminal Stage 4 metastatic colon cancer".  We are certain that it has metastasized to the lymph nodes and we believe it has also metastasized to the liver as well. We cannot be 100% sure of this today because the surgeons were not able to get a liver sample before closing up my abdomen during my initial surgery (apparently they were worried I wouldn't make it beyond the 6 hours I was already in surgery).  Our hope is that we can stop/slow it from metastasizing to the lungs (the 2nd favorite destination of colon cancer beyond the liver).  We have found no evidence of lung involvement to date but, of course, cancer cells are too small to be seen so all we can do is hope.

An additional downside to the cancer diagnosis is that it makes me ineligible for a liver transplant if my PSC were to worsen.  Many thanks to those who stepped up and volunteered to be a living donor for me, I cannot tell you how your generous offers touched me and my family (I am crying at the thought as I type this line).  But it is not to be.

One of the few nice things about being ill the the outpouring of love and support that you receive (or at least that I've received) from my friends and family.  Emails, cards, text messages, phone calls, unexpected visits, comments on Facebook/blogs/twitter.  I read / listen-to every single one of them and while I cannot always reply, every one of them lifts my spirits and makes me realize how my life has touched others.  I got one of the most heartwarming voicemails from someone I haven't worked with in several years just yesterday.  I cried when I listened to it.  It's been wonderful to have my parents so close (about 30 mins away) and I've gotten to see a lot of them both in the hospital and since.  I talk to my brother in Michigan every week which certainly brightens my day.  But most of the heavy lifting has rested on the shoulders of my amazing wife, Kristen.  She is my wife, my home healthcare provider, and my savior at the moment.  She is the strongest person I have ever met.  I may not be lucky health-wise, but when it comes to choosing a spouse, I am truly the luckiest man alive.

With two young children at home (ages 6 & 9) Kristen and I had to decide what to share, with whom, and when.  We definitely didn't want them to find out about my diagnosis and prognosis by overhearing a conversation or piecing things together.  So we decided to be honest with them and sat them down last weekend and just told them everything as clearly yet concisely as possible.  They were upset of course, but I've been amazed at how adaptable children are.  We can now talk about it as a family without any hushed tones or raised eyebrows.  It's difficult to know for sure, but I think it was the right choice for us.

As for work, I am fortunate to work for an employer (Pivotal) that provides life insurance, short-term and long-term disability insurance, and is generous on top of all that.  I am not sure if I will return to work or not (or even whether I will be strong enough to have that option).  I certainly gain a lot of my self worth and gain a lot of satisfaction from my work, so it could actually be theraputic for me.  I'm currently on short-term disability insurance and will migrate to long-term disability when that runs out.  I guess I will just have to wait and see whether returning to work is a real option for me.

My prognosis is really difficult to determine.  All you really have is the statistics, but all patients are individuals and have specific advantages and disadvantages that bias those statistics.  For example, the 5 year survival rate for stage 4 colon cancer is about 6%.  But, was the average patient age in that study 30 or 60?  The average survival of a stage 4 colon cancer patient from diagnosis is just over 2 years.  Am I on the high side or the low side of the bell curve?  Who knows?  Obviously, my PSC is a complicating factor that could have a negative effect on my survival rate.  Then again, chemo may actually help my PSC in addition to slowing/stopping my tumor growth (according to my GI oncologist).  So instead of focusing in on a date, I've decided to focus on living the rest of my life focused on the things that bring me joy in life.  Starting with a 6 year old and a 9 year old who need their daddy.