Chapter 2--Questions, New Vocabulary, and Faith

Diagnosis: Stage 3 Pancreatic Cancer
I would love to say that everything went smoothly and we found doctors and got answers quickly.  But we did not.  We knew it was pancreatic cancer but we did not know stage or have a treatment plan and mostly--we had no idea how to navigate this world we now lived in!

But I got ahead of myself.  The next steps after the doctor left the room was to figure our how to tell our kids, our parents, our siblings, our loved ones, our friends the little bit we did know and much of what we didn't. Every phone call broke our hearts and broke the hearts of our family and loved ones. I would never want to relive those early days again.  And pray.  Oh did I pray.
I prayed the doctor would walk back in and say, "Oops, wrong room!".  But he didn't.

Don't google pancreatic cancer.  It is the cancer that is lagging way behind all others in research and treatment efficacy.  And the numbers and statistics are startling.

And we felt left out on the cold.  The hospital discharged him.  Our gastro doctor said he would call to tell us what to do next but he never did.  I searched and pounded the web for information.  I got Norms medical records and uploaded them and all of his information to MD Anderson.  Within a few days we had an appointment and he was referred for surgery.  The tumor had blocked his bile duct and he was turning yellow so they put a stent in to open it.  While in there placing the stent, they biopsied the tumor.  We thought "Great, we should know more soon!".  But we didn't.  We were told it would be the end of February before a doctor could see us.  So we decided to get a second opinion--after scouring the internet and finally getting solid advice from pancan.org.  The second opinion gave us the news were dreading.  Norm had stage 3 pancreatic cancer.  We finally got our appointment moved up at MD Anderson and after another CT scan, we were told on February 7th that the tumor was inoperable because it had surrounded the splenic artery and hepatic artery and a vein.  Our hopes were raised when we were told of a very promising clinical trial only to have them dashed the following day by the news that Norm's liver function had not returned to normal and that bumped him our of the study.

And so he began chemo. Folfirinox standing for:

FOL

= Leucovorin Calcium (FolinicAcid)

F

= Fluorouracil

IRIN

= Irinotecan Hydrochloride

OX

= Oxaliplatin

The drug combination is not without side effects (but what chemo treatment isn't?)  Here are a few and how Norm is doing with them:

• Fatigue--This is probably the worst one for him.
• Weight-loss--He is taking digestive enzymes to help with this
• Nausea--Meds seem to be controlling this
• Digestive issues--meds seem to be able to help with this
• Sore mouth and ulcers--not a problem for Norm
• Gritty or watery eyes, blurred vision--he has experienced some vision changes
• Cold sensitivity on hands, feet, and throat--this is the most irritating for him, he misses cold water....
•  Hearing loss and ringing in his ears--Yes, this is affecting him
• Hair loss--not too bad

It takes about 6 hours each round to infuse the chemo into him.  And then he wears a pump for an additional 46 hours for the last drug.  And we repeat the cycle every two weeks.  I have called this period of time the 'doldrums'--it reminds me of stories of the pioneers crossing the Atlantic and the winds disappear and they just drift without air to fill he sails and it feels never-ending. We are poisoning Norm every two weeks and waiting.  And waiting.  Analyzing every symptom, blood test, wondering if it is working or not.  After 4-6 treatments, we will have completed 'standard of care' and then we have another CT to see if the chemo is working.  At this point, depending on how it is working, he may qualify for another clinical trial IF one is open and IF he meets the criteria. 

There are other side effects.  Norm is cold all of the time so he has a new appreciation for warm blankets and sunshine.  He loves to hear his kids playing and laughing.  He calls family and friends more often.  He eyes seem to leak more--when holding his grandchildren, singing in church, or petting his old beagles ears.
There are side effects for me as well.  In the beginning, my head was reeling. Today, I notice more.  I can read my husband better.  I wake up in the middle of the night and check on him and make sure he is still ok. I am ashamed to admit but in the early days I had a hard time looking into my children's eyes.  I felt like I could not control my fear and I couldn't bear to see my fear reflected in their young eyes .I still do not have this figured out.  I have realized how many little things Norm does for me all of the time---fill my car up with gas, fix things, or change light bulbs.  He can still do some of these things but I hate asking him--his exhaustion is so evident.

All of the sudden our life was not going according to plan.  For most of my adult life, I was pretty certain of what God wanted from me.  There have been many times that both Norm and I have followed a path that we believed God chose for us rather than the 'traditional' path.  And we have found great blessing in that even if it was lonely or scary at the time because we knew who was in control and it was easy to have faith then.

Faith is more difficult now.  I try not to worry about tomorrow or the next day and keep telling myself fear has an author and it is not my God.  My prayers and prayers from all over the world may be answered in a miracle when we look at a scan and see no tumor.  I believe God can do that.  But I also know that sometimes God says no and He can bring beauty and blessing in the midst of great sorrow.  He already has.  Relationships have been restored. Forgiveness has been given and requested.  Profound generosity has come from places we could never have imagined.  Cancer has put us places where we can no longer stand on our own and letting go and giving it all to God is a great relief.  And it has brought people into our world that we can talk to about deep and spiritual things that would never have happened before.

Another huge blessing we are thankful for is Norm's job.  The medical insurance we have today is the best we have ever had in our life.  And his bosses have been more than understanding-- when Norm does not feel well or has to take time off for treatment, they have allowed him to work from home.  The flip side to that is that Norm loves his job and when he feels well enough, it is truly a gift to do work you love and be appreciated.

And the love and support from our church and our family--I could go on for days telling of how people have stepped in and loved us and helped us.  The cards from all over the country from people we didn't even know, the food, the help with our kids, the plane tickets, the hugs and the tears we have shed together.  I have never felt peoples prayers holding me up like I do now--and I know Norm feels the same way.

There are days that it still feels like the 'doldrums' but if I am really honest, God is moving and shaping and I will hope and together, Norm and I and those around us will have faith.

These words from a 10th Avenue North Song drift through my mind constantly:

"I don't want to live in fear
I want to trust that You are near
Trust Your grace can be seen
In both triumph and tragedy."

                                                Facetiming with some of his favorite girls!