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Journal entry by Serene Matthews

Randy just got a call that the previously pesky PET scan was approved by insurance.  The site that was part of the Palo Verde Oncology group was not in network but they approved another location.  Whatever...  Now we just need good results from the PET scan.  Non-stop prayers requested please!!!

At least we know that the authorization requests were submitted in a timely manner and this one was approved quickly.  We assume that means the port, echo-cardiogram and chemo requests were submitted as well.  

We don't want to do any of this, but we can't get to the other side of it if we can't get started.

On another note, the marvelously responsive Mayo doc just emailed with me about an airline cancellation letter we need.  He told me a few days ago to email him with the information which I did this afternoon and he immediately forwarded the info to his PA who is actually going to write the letter.  
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Journal entry by Serene Matthews

We feel like we've gone backwards and are discouraged.  When we left Boise two weeks ago it was partially because of a denied PET scan. We think it was denied because of the way it was submitted by the Boise oncologist's office.   The PET scan was subsequently approved by Blue Cross but we'd already left for Mayo by then.

When we met with Dr. Tyson (doc/surgeon) at Mayo nine days ago, he wasn't concerned about the PET scan saying it wouldn't change what he'd do. He did want Mayo pathologists to review the physical specimens which they did. That caused a one week delay, confirmed the original diagnosis and identified this cancer as very aggressive.

Today we had an appointment with a Phoenix oncologist, not part of the Mayo system but recommended by the Mayo oncologist. The Mayo clinic is not taking new chemo patients right now because of a computer records changeover. So, right now we are outside the Mayo system until we re-engage with the surgeon pending bladder removal.

But first, we have to get through chemo. But before we can get through chemo, we have to get TO chemo. Like the Boise oncologist, the Phoenix oncologist wants a PET scan.  Both indicated in different ways that it could change the whole scope of what is done - even to whether the bladder is removed. The big concern is whether two spots on his lung are bladder cancer that has already spread - that is really bad. The Boise radiologist and oncologist didn't believe that would be the case but needed to go there first.     

The Phoenix oncologist also needs pre-authorization approvals for a Port, an Echocardiogram and the chemo itself.  We also need to attend a chemo class.  She says it may take 7-10 days to get everything requested, approved and done.  

Meanwhile an aggressive cancer has free reign...

On our only positive note, the Mayo doc/surgeon cared enough to send an email asking Randy how his appointment with the oncologist went. He has been terrific to respond to any email question we have in a very timely manner.    

Thanks for the support - we are needing it today.

Journal entry by Serene Matthews

We've had an interesting morning here in Mesa.  Dr Tyson notified us that he wanted to delay chemo a week to have Mayo pathologists review the pathology specimens to confirm the cancer stage before going through the intense chemo. The specimens need to arrive from Boise and then be reviewed. The difference would be Stage 1 or Stage 2 (the current diagnosis) but we aren't exactly sure what that might mean in the long run.  Randy's bladder is still problematic and keeps cooking up trouble.

Randy has an appointment with the oncologist on Thursday the 20th - we assume to meet her and hear the plan.

So, in the meantime we can sit in the heat in Mesa or we can go have some fun while we wait. We had planned to meet our friends Kent and Pam in Stillwater, Oklahoma for the Boise State - Oklahoma State football game and thought those plans were defunct. I was on the phone with United getting ready to cancel our plane reservations when this all evolved. It was crazy expensive to try and change the flights to leave from Phoenix instead of Boise at this late date so we just cancelled and are going to take a road trip instead. Let's Have a Little Fun First! Go Broncos!  We'll leave this afternoon and plan to be back here on Tuesday.

We have been overwhelmed with the support we have seen through this site, email, text messages, phone calls, our Serene Wandering blog and through Facebook.  We feel the love and so appreciate it.

PS.  For those of you who know about the PET Scan saga in Boise, we got a call today that it was finally approved. We assume the Boise oncologist kept working on it, not getting the message that we had transferred care.
Randy’s Story
Randy's bladder has been problematic for many years.  A low grade papillary cancer was found in 2008 which led to yearly cystoscopies.   Since bladder cancers almost always come back, and come back worse, the yearly checks were just part of life.   As feared,  a second bladder cancer,  high-grade carcinoma in situ, was diagnosed in 2017.   That resulted in treatments and quarterly checks.   A third,  bladder cancer was found in August 2018.  This one is much worse and muscle invasive and thus will require removal of his bladder and prostate.  That is challenging, of course, but not totally unwelcome.  Get that stinking thing out of there!     

This cancer was found early before any evidence of spread.   Randy is young, otherwise healthy, and a good candidate for a surgery which will form a new bladder from small intestine.    Because we are mobile, we opted to come to the Mayo Clinic in Scottsdale for treatment and eventual surgery.   It is one of the premier facilities in the country in addressing bladder cancer. 

We met with a doctor who specializes in these neo-bladder surgeries,  doing 1-3 per week.   Randy will soon embark on an intensive chemotherapy lasting six weeks.  Surgery  will be in about nine weeks.

Although we certainly welcome personal contact, we also opted to make this CaringBridge website. We are using it to keep family and friends updated and appreciate your support and words of hope and encouragement. Thank you for visiting.