In The Beginning, Part II

“If you want to make God chuckle, tell him your plans!”

This blog will complete the steps it took to arrive at this diagnosis and I will discuss the value of a second opinion.  During my colon cancer in 2005, I never even considered getting a second opinion, because cancer is such a jolt to your senses, you just do whatever your doctor tells you to do.

In Part I we left off prior to my Petscan, but by mid-March we still had no indication of cancer.  Honor Health had been ordering all the diagnostic labs and procedures since the onset of symptoms on November 19th.  On March 10th I received a notice in my Portal that results of a CT Scan were available.  We were having dinner at Mom’s and I pulled it up on my phone and started reading it out loud to Mom and Diane. As I was reading these medical terms I knew they were bad but I found myself googling words like; Infiltrative mass, concerning for carcinomatosis, upper quadrant ascites, nodular density concerning for metastatic disease!  Diane’s face said, “why are you reading that in front of your mother!”

So, at least now we knew the problem was not Gastritis!  On March 22, I had a needle biopsy with two samples, one of the mass on my appendix and one of the ascites (which is an abnormal buildup of fluid in the abdomen).  Based on my previous history of colon cancer, the main focus was on identifying whether or not this was a reoccurrence.  

My frustration was growing.  I wasn’t really bonding with my doctor and I was tired of all the work I had to do to get things scheduled.  Meanwhile, two friends were undergoing different cancer treatments at Ironwood Cancer and Research Centers and both told me how much the LOVE their doctor!  Carol pushed her oncologist to meet with me and I agreed to meet him on April 1st.  I wanted to LOVE my doctor!

Here’s what happened on that first visit to Ironwood.  They had the advanced benefit of the results of all the tests Honor Health had conducted during the preceding four months.  That would include about 4 CT Scans, a colonoscopy, an upper GI, several MRIs, and the needle biopsy.  Before I met Dr. Kalmadi, his PA Jennifer interviewed us.  She asked me one critical question that had never been asked…”What did you do for a living?”  I told her I had retired from the Postal Service and much of my career was office and field work.  Then she asked, “so, you never worked around chemicals or asbestos?”  That question alone put them on the track for an asbestos related disease.  We made up our mind right then we would be switching to Ironwood.  

Now my problem was how do I graciously let one doctor go?  The last diagnostic test ordered by Honor Health was the Petscan on April 6th.  Strangely, the Petscan was somewhat encouraging.  There were only two spots that identified as cancer and meanwhile the organs, lymph nodes, and bones all seemed cancer free.  At that point some of you might recall I was asking for prayers that the cancer was isolated to the mass on my appendix and, what the heck, let’s just remove the whole thing and we’ll be done!

Apparently it’s not that easy.  It’s important for doctors to know the origin of a cancer before they perform any type of invasive surgery.  So, on April 11th I had a meeting with both doctors, first at Honor Health and then later in the day at Ironwood.  That was the day I would tell Honor I was switching.  But, there was one missing element that had never been returned.  The results of the needle biopsy of the ascites (fluid) had never showed up in my Portal.  I asked the Doctor, why not and he told me it was there.  He looked in his computer and sure enough it said “hold in lab”.  He got on the phone and found out that it was still at the University of Michigan and the results were not yet available.  

Two days later I was at Chandler Regional to have a followup laparoscopic biopsy ordered by Ironwood.  While I was in the prep room prior to surgery my phone rang and it was my Honor Health oncologist telling me that the results were in from UofM and they were positive for peritoneal mesothelioma. As a point of reference, the mesothelioma in the ascites is so microscopic it does not show up on a Petscan.  And that’s how we finally arrived at this rare cancer diagnosis

Sorry, if that was dry and boring but the real point is to be your own advocate, ask the tough questions and make sure you’re involved with your medical team.  The second opinion may have been the best move we’ve made to date.

Now, let me emphasize we not unhappy with Honor Health,  We are thrilled with Ironwood.  I actually felt my Honor Health doctor was relieved that we moved to Ironwood.

Maybe God put those frustrations and difficulties in front of us to make us consider a second opinion.  The whole episode reminds me of a God joke:  A local dam had burst and was flooding a nearby neighborhood.  One family had a flooded first floor and had all moved up to the second floor.  Neighbors came by with a ladder and said, “come with us.”  “No,” the family said, “God will save us.”  Later rescuers arrived with a boat.  They again refused and said, “God will save us”. The waters rose and they retreated to the roof.  A helicopter arrived and offered to lift them to safety.  Again, “No, God will save us.”  When they got to Heaven they asked him, “God, why didn’t you save us?”  God replied, “I sent you a ladder, I sent you a boat, and I sent you a helicopter!”

Here’s the latest on my health:

My third Chemotherapy was on Tuesday and we are still confident that it will be my last prior to the HIPEC surgery.  We are so confident that we rang the bell at the Chemo Bar indicating we’re done!

My side affects were the mildest of the three sessions and even the laparoscopic exam on Friday at Mayo went smoothly.  I’m just a little sore around the incisions.  I will add that it was a good week most likely because I was more diligent with my nausea meds and my pain relief meds from the surgery.  It really didn’t pay to be so macho the first two chemotherapy sessions.  

One more MRI tomorrow at Mayo then a few meetings about the plan.  With any luck we’ll be able to make arrangements to go home to Alaska for a few weeks….very soon.