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Journal entry by Serene Matthews

Randy feels hopeful and declared himself 65% of human.  Yesterday was the most normal he has felt in about eight weeks.    He even went to Home Depot by himself.  He hasn't been able to go any where without me tagging along in a long time.

Yesterday afternoon we joined another couple for music in the courtyard.  We played a dice game and enjoyed a couple adult beverages.  It felt so great!!!!

He is also doing well today.  This morning I left to meet a friend for breakfast and do some shopping and was gone for three hours.  That is the longest we've been apart in months.

As I write he is perusing documentation for our trip to Tahiti in May.  That trip was scheduled before all this happened and is the carrot at the end of the stick.  Or maybe I should say the pot of gold at the end of the rainbow.  The goal is to be recovered from surgery, with the new bladder apparatus working well enough, to go on a long flight and enjoy a tropical vacation in early May.

Thanks for your prayers and enduring this journey along with us.
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Journal entry by Serene Matthews

We had a very low key lunch out yesterday for Randy's 60th birthday.  He even had a cerveza (beer) for the first time in a couple months.  Then he and I just chilled inside for the rest of the afternoon and evening, cocooning in some blankets because of the 60 degree weather....yeah, I know, no sympathy!   We had strawberry sundaes for dinner and spent a quiet evening.

This morning we were up bright and early for the 60 minute drive to Glendale to meet with Dr. Chadha, the oncologist.  His platelet count dipped again so if we had been planning on a fourth cycle, it would have been delayed.  The appointment went well and Randy is DONE with chemo.  Now that is something to CELEBRATE!    We'll celebrate again when he has CT scan results in early December showing the chemo worked (at least that is our prayer.)  She thought it'd be 4-6 weeks before he really felt like it was out of his system.

We probably won't see Dr. Chadha again because she doesn't believe in long distance monitoring.  At some point we'll need to figure out who his doctor is going forward if we get back on the road next summer as we hope.  Dr. Chadha did suggest we not spread doctor involvement too thin because then no one takes ownership.  It is likely we'll stick with Randy's long term urologist Dr. Fairfax in Boise and possibly a doctor at Mayo.   We are assuming he'll need CT scans on a regular schedule indefinitely.   But, one thing at a time.  

For today, all is good.  Randy is done with chemo and is out enjoying the warm sunshine.   I am off to Spanish Class ....

Thanks again for your interest and prayers.

Journal entry by Serene Matthews

Randy has now started the long slow climb out of the chemo haze.  His last treatment was on Wednesday and, as expected, the rest of that day and Thursday were bad.  He slept about 15 hours on Thursday - a good way to get through a yucky day.

Yesterday (Friday) was better.  He opted not to go to his hydration appointment because he didn't feel like he needed it and didn't want to sit there for two hours.  He felt well enough to stay awake past midnight to watch the Boise State football team win their game.  

He has felt okay so far today - just taking it easy watching college football.  It isn't worth pushing too far too soon, but we are both looking forward to having a life beyond the trailer, doctors' offices, and grocery store.  I've been able to enjoy the resort some and it will be nice for Randy to be able to join me.

There will likely be a rough half day here and there as he endures the slow climb back but there should be more good days than bad going forward.  

Randy will have to start shaving again when his hair decides to grow back.  He dislikes shaving and not having to do so was one silver lining of chemo.

Next up:  
Randy's 60th birthday on Wednesday 14th - Garcia's here we come!
Oncologist appointment on Thursday 15th
Pre-Op appointments at Mayo on December 4 and 5
Surgery on December 18

As always, thank you for your prayers and concerns.  Please keep praying that the chemotherapy did what it was intended to do - to wipe out any stray cancer cells that escaped the bladder through the blood vessels in the bladder wall.

Journal entry by Serene Matthews

The chemo therapy regimen is done.  Whoo-hoo!  Or maybe hold the whoo-hoo until the side effects are done...

Randy had an appointment with a physician's assistant today and they discussed the up-tick in the severity of the side effects he is feeling.  She was concerned about his aggressive use of Aleve and wanted to prescribe an opioid pain med.  During past surgeries Randy has discovered the only opioid he can take is percocet. We already had some from his last surgery so, for the next few days, when he has a headache or joint pain from the nuelasta he'll be taking the big gun.   Odd to think that is preferable to over the counter Aleve given everything you hear about opioids.  At this point it is a means to an end for a few days.

He'll also be going back on Friday for a session of hydration, steroids and ??? to help him get through the weekend.   Hopefully by then he'll be on the downward side of all this and he'll start having some good days.

A side effect that I haven't heard anything about yet in cycle three is a hypersensitive sense of smell.  During the first cycle, anytime I opened the refrigerator he told me something smelled really bad.  I looked for bad produce or lunch meat and couldn't find anything.  I threw stuff away that I knew was fine but couldn't figure out what he was smelling.   A day or two later I opened a sealed plastic container of black beans - found it!  The black beans were bothering him through a sealed (but inexpensive) plastic container across the room.

The second cycle I made the mistake of putting on a spray of cologne, not a lot, not anymore than I ever do, and he couldn't stand to be around me.  I couldn't even go in the chemo clinic that day because he thought I'd bother other people too.  

This time, either his nose isn't as hypersensitive or I'm doing a better job of not stinking up the joint.

Journal entry by Serene Matthews

Randy had his long day of chemo yesterday and he could feel it coming on even as we were leaving the clinic.  On the way home he wanted to stop at Firehouse Subs to get a sandwich and we got home about 4:00.  By 5:00 he was crashing with chills, fever, headache etc - like a bad flu without the nausea (thank God).  He hasn't had that severe of a reaction to Day 2 before.

The good news is that the overnight wasn't too bad.  He slept pretty well.  He got up early, had a good breakfast and is sleeping again (It's 9:00 am here).

His session today should be his last chemo!  It will be hydration and the miracle shot that causes the internal war.   The next week will be hard and then, hopefully, the long slow climb back to some feeling of normalcy before surgery.

Please keep us in your prayers and thoughts the next few days -we will need it.

Journal entry by Serene Matthews

Randy's platelets were back up to 119K (up from 74K) so chemo was on for today.   Monday's share of the cocktail is the shortest and easiest day of the three and all was accomplished quickly.   

If he still feels okay in a few hours, we'll go over and listen to some music by the pool.  Otherwise, we're taking it easy.

Thanks for caring.

Journal entry by Serene Matthews

Randy has had several pretty good days in a row.  Each day is another day past his last chemo and he's been eating lots of platelet regenerating food.  He's also taking double doses of Aleve on a regular schedule.

Last night he felt well enough for us to go to a Murder Mystery Dinner here in the resort.  There were about 15 table groups of 10-12 people each.  There is a mystery to solve and six suspects tell their stories.  We also got other hints and news stories to study.  

Randy was the first at our table to deduce the appropriate suspect and put the pieces together. He did it quite quickly with that engineering, problem solving brain and it all fell into place. Then we kept trying to poke holes in the theory because once we were looking at it from that angle, the solution seemed too obvious. Lacking another story that worked, we submitted Randy's solution and we won!  I've already got tickets for the February Murder Mystery Dinner.

This weekend we will watch some football and plan to see Randy's brother and sister-in-law on Sunday. Then Monday the "fun" begins anew.

Please pray that his platelet levels will be high enough to just get on with this chemo crap.  It won't be a fun week, but let's git 'er done.  Three more days...

Journal entry by Serene Matthews

Randy has had a good day. The headaches have stayed at bay.

The weather was great and Randy was able to sit outside most of the day.  He spent some time watching To Kill a Mockingbird on the iPad and has been drinking lots of water.

We went over to the pool area and listened to music this afternoon and are now prepping to have a final dinner with Beth.  She will leave tomorrow to go down to Tucson for the winter.  It has been great to have her with us.

Randy decided early today to stop the process for obtaining an MRI so we are on hold with that.  

We are on a mission to gain platelets from now until the beginning of cycle three on Monday.  I did research on which foods help with platelet regeneration and we will be eating a lot of beans, beef, and green leafy vegetables.  Randy has been loving his favorite comfort foods just to get through chemo but that can't be all he eats now.   Food prep is on a platelet mission.

Thanks for your interest, prayers and support!

Journal entry by Serene Matthews

The headache lifted within an hour of my posting last night. That is a praise!  It stayed away all night and Randy had good sleep.  We are so thankful.   

We were emailing with his (on vacation) surgeon again last night and he once again offered December 4th as a surgery date since the plan is now only three cycles of chemo.  We feel that time frame has some risk in it (as in would Randy be physically and plateletly ready) so we opted to stay with the 18th.

Journal entry by Serene Matthews

The most common side effect Randy's had for awhile now are headaches.  

He has had a painful headache almost all day today.  I have a phone call in to the oncologist office to see what more/different he can take to battle headaches.   Tylenol just isn't taking charge anymore.

Prayer warriors - Please take on this, and any future headaches.

Update:  They are ordering an MRI just to be sure there isn't some other reason going on for the headaches...She also suggested switching to a double dose of Aleve.

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.