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Journal entry by Serene Matthews

We did not expect to get a Mayo scheduling call on a Saturday morning but did!  Thank you Mayo and Praise God!

Randy's Electromyography Test is scheduled for Monday morning.  He's been told it is painful but he's already dealing with so much pain from the nerve that getting answers which may eventually give relief is worth it.

This morning he will be upping his dose of gabapentin - a medication for nerve pain relief.  It is one of those meds you need to ramp up and ramp down carefully.  Hopefully that will give him some relief until the urology department clears him to get the 12 week course of steroid infusions which are the recommended course of treatment.

In the meantime we are giving serious consideration to what all this means to our future.  We had presumed we would leave in June and take a year long road trip and go finish our map.  That would mean getting the CT cancer scans wherever we were and sending them back to Mayo.   Then we would return in a year or so and buy a house in a sun city type community in Tucson or Phoenix.    The last week, with all the things that have happened, is causing us to think that our plan was too aggressive.  

Perhaps we would be better off buying the house this spring and getting Randy's hand taken care of even if it goes into the summer.  We think we'd still go RVing in shorter spurts but likely coming back to the Mayo mothership for scans and continuity of care.

Within an hour of first talking about this modified vision of our future, the semi-troubled closing on our first rental went through and we got an offer on the second house.  We believe in God things.
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Journal entry by Serene Matthews

Randy is feeling quite well from the bladder and infection perspective.   He has been very frustrated with the pain in his hand as a result of postsurgical inflammatory neuropathy.  The neurologist recommended occupational therapy evaluation was scheduled right away but someone seems to have dropped the ball regarding scheduling the electromyography.  It has been a frustrating couple of days trying to follow up as to why that hasn't happened.

Randy had a lengthy occupational therapy evaluation this morning.  His condition was explained and some short term suggestions made.  They suggested he speak with a doctor about modifying the medication schedule.  The OT could see where the neurologist resident intended for Randy to have the electromyography test and she was going to try to nudge neurology as well.   Randy goes back for OT again next week.  

Randy was feeling pretty aggrieved about this mythical Mayo model of patient care when Dr. Abdul (urology resident) called at 6:00 on a Friday evening to check up on him.  They spoke briefly about the bladder and infection and at more length about the hand issue.  He agreed with increasing the medication level to try and get some pain relief.  If the EMG is not scheduled by Monday afternoon, Randy is to have him paged and he will address it with neurology himself.  

Although Randy didn't get the ultimate prize of getting the EMG scheduled, it was a productive day nonetheless.  

And in the afternoon we received funds for the sale of one of our rental houses and an offer on the other.  That too was productive.

Journal entry by Serene Matthews

The next big thing today was a neurology evaluation on Randy's legs and hand - the pain in his hand being the primary concern.   It has been so bothersome to him that he really did not want to leave the hospital and be three weeks out on an outpatient evaluation schedule.

The neurology resident came by earlier today and did an extensive exam with reflex hammers, pokey pins and cotton balls trying to gauge Randy's strength and sensitivity in various tasks.   An hour or so later he came back with the neurologist attending doctor.  He repeated much of the same tasks and then came to his conclusion.

Contrary to the "pinched ulnar nerve on the operating table" hypothesis, he called the condition Post Surgery Inflammatory Neuropathy.   Randy will have an EMG (Electromyography) evaluation to confirm the diagnosis in a few days.  He will also have an Occupational Therapy evaluation and potential therapy.  Short-term he will go home with a nighttime medication to relieve the pain.   Ideally the neurologist would order a 12 week steroid infusion (once a week) but that effects the immune system, something the urologists don't want to happen right now. 

So, Randy is being discharged this afternoon with oral antibiotics from the urology side and the pain med from the neurologist.  It sounds like we'll be back and forth a bit in the next week.

Again, thanks for your prayers and concern.  

Journal entry by Serene Matthews

We never did end up seeing the docs again last night but Dr. Tyson and Dr. Abdul came in about 8:00 this morning and didn't seem to have anywhere else they needed to be anytime soon.   We had a discussion that ranged from the immediate, to the near term, to the long term.

Immediate:  All of the previous tests are fine and the white cell levels in his blood are decreasing.  Dr. Tyson believes that Randy had a urinary tract infection that is being treated by the antibiotic.  He thinks the fluid in the lymph node area is a red herring - so no surgery is planned.   They have ordered a neurology consult to look at Randy's hand pain and leg movement.  Depending on when that happens and what they want to do, Randy may go home today, or may stay another night.   If staying another night helps get that neurology assessment sooner, that is what he will do.  He will go home with an antibiotic prescription.

Near Term:  Dr. Tyson showed on a graph that Randy will have valleys in his recovery which will track upward overall.  This was a valley.  He will have days when he feels better than others and that is normal.  If he has a severe valley like this again we are to do exactly what we did (call doctor on call) but also email him so he has a heads up sooner.

We have an appointment with him on January 30th and Randy will have a whole other set of scans three months post-op (two months from now).

Long Term:  Because Randy has a piece of bowel in a place God didn't intend, he will be prone to urinary tract infections. (Ladies, we know about that don't we...)  When (not if) he crashes in this way in the future, he has to give information to the doctor about his neobladder and insist on a urinalysis culture, not just a one hour quickie, and appropriate antibiotic.   We will travel with an anti-biotic in hand to get him by in case we are in a rural or foreign setting.

Dr. Tyson said Randy has done everything right, doing the chemo, having the neo-bladder surgery and doing all he can to learn and help himself along the way.  He was very encouraging, as he has been from the first time we met him.

Journal entry by Serene Matthews

The quick answer is Randy is feeling a lot better but we don't know much more than that.   The on-call resident from yesterday came in before I got here at 5:30 a.m.  Two other residents came in about 6:30 and Dr. Tyson came about 8:00.  

Dr. Tyson wanted to gather more information (chest X-ray, ultrasound to rule out blood clots in his legs etc) before deciding on surgery.   Randy wasn't allowed to eat or drink because of possible surgery.  

Dr. Tyson and his associates had a long (10 hour) neo-bladder surgery to do today so we haven't seen anyone since.   About 5:00 he sent orders that Randy could eat and drink until midnight and to continue the antibiotic.   From those orders we deduce that:    He's not having surgery this evening.   He's staying another night and surgery is still possible for tomorrow.  

The pros and cons of surgery are:   If they go in and gather a sample of the fluid near the spot where his lymph nodes were taken, they can culture it.  If it is infected they can use a more targeted antibiotic.  And if it isn't infected they know they might have a problem elsewhere.   Putting a drain in to get the fluid out would also assist in the healing of that issue.    The con - it is another surgery under general anesthesia with a slight risk of introducing an infection if there isn't one already.

We expected to see Dr. Tyson or Dr. Abdul this afternoon/evening after their surgery but it is now 6:55 pm and we've had no news except the change in orders.   We're thinking now that we may not see them until morning.

Randy is doing well.  He enjoyed eating a meal for the first time in two days.  It appears that whatever was bothering him so badly on Saturday and Sunday has passed, but we have no idea if it was the IV antibiotic that made the difference.  

Thank you for your prayers and concern. Please keep them coming!

Journal entry by Serene Matthews

Randy started feeling really crummy yesterday afternoon and was in bed by 7:00 with chills and pain near his incision.  It was a rough night.

This morning he was also running a fever so I called Mayo and spoke with the doctor on call.  He recommended taking him into Mayo emergency for evaluation.

We haven’t been super impressed with the Mayo experience, but Mayo ER has been amazing.  He was in an evaluation room in moments and his own ER room in 10 minutes.  There must have been a triage procedure because there were other patients in the waiting room.

Tests were ordered and completed very quickly.  Doctors have been in and out.

The end result after blood work, urinalysis and two different CT scans is that they don’t know why he was/is so miserable.  There is a little fluid in his pelvic cavity but it isn’t from his bladder.  It is possibly from where his lymph nodes were removed and might possibly be in the beginning stages of infection.  Or it may be something else that isn’t fully presenting yet.

They are admitting him overnight and giving him a broad antibiotic since his white blood cells are slightly elevated.

Randy says to add he is miserable.  We are waiting transfer to a room.

Once again, we covet your prayers.

Update:  Another CT scan is planned for this evening, an abdominal scan looking for answers...

update:  No third scan after all.

Journal entry by Serene Matthews

As you can assume from the title - we had a good day at Mayo!  (It was a way too long day but that is a whole other unnecessary part of the story.)

The good news is the contrast x-ray showed his neobladder wasn't leaking.  Randy was able to see his bladder on the screen while the doctors were discussing it. Dr Tyson said Randy has a beautiful neobladder and he was very pleased with how everything looked.

And that nasty catheter was removed!  Whoo-hoo!  

We then had a lengthy discussion with Dr. Abdul (Dr. Tyson's current resident) and he patiently answered all of the questions he could.  Then we met with Dr. Tyson to clear up additional questions and learn of the plan going forward.

In a nutshell, Randy is suppose to eat and drink and try to keep liquids flowing through that new bladder.  Because the bladder is made of intestine there is mucus on the inside that needs to be flushed through.  When he had the catheter, Randy would have to flush the neobladder purposefully a couple times a day to avoid and/or remove blockage.  Now that the catheter is gone, he'll have to just run enough fluid through to keep it from blocking.  Mucus levels should minimize in a few months but, for now, if mucus blocks the plumbing that is our signal to call in and race to Mayo emergency.  Please pray that we don't have to add that drama to our repertoire!!!  

Randy is to do about 100 kegel exercises per day to strengthen the pelvic floor muscles.  The purpose is to control urine flow and be able to close the sphincter for urinary continence.  

For the time being, he is supposed to try to urinate every hour or two during the day.  Night time will be interrupted for awhile too but hopefully he'll still be able to sleep better than he has been with tubes.  No more tubes!!!  Praise!!

Dr. Tyson had us go eat lunch in the cafeteria and fill up with fluids again so Randy could have a uro-flow ultrasound.  He urinated as much as he could and then had an ultrasound to see if he was able to empty.  He did and the neobladder only had a "few drops left."  Another praise!!

It has been exactly three weeks today since surgery.  He has come along way!  We go back in three weeks for another uro-flow and to see how it is going.

At that time we'll also talk about removing his port and whether his left leg lateral movement has improved enough for him to drive.  The right leg seems to be fine now.  If you recall, scar tissue from a previous bladder surgery years ago was attached to nerves and the surgeons had to scrape tissue away from the nerves resulting in this temporary impairment.   

His most annoying issue right now is his hand effected by a pinched nerve because of his arm placement during surgery.  It is slowly getting better but is quite painful at times.  

The bigger challenges seem to be going well.  The doctors are pleased with the progress and with Randy as a patient.  He is knowledgable and willing to do what they ask.  Randy tries very hard to take care of his "stuff."

Thanks for coming along.

Journal entry by Serene Matthews

I had a request for Fuzzy's photo.   I hadn't taken the time to learn how to add pictures before but it wasn't hard.  Here are a few.  

The first is Randy with Dr. Tyson, his primary surgeon in scrubs, and Dr. Abdul.

The second shows the fuzz.

The third is Randy relaxing in the sunshine at our site.  It was sunny and cool today.

Journal entry by Serene Matthews

Randy had a successful visit to Mayo this afternoon.  The remaining stint that didn't budge last week came out easily today.  But the catheter stays in another week.  Randy said "dang" to that as he is very tired of that thing.

Dr. Tyson was pleased with Randy's progress and scheduled more appointments for Tuesday, Jan. 8  for blood work, a cystogram X-ray to view the stability of the new bladder, and to remove the catheter.  That will be exactly three weeks post surgery.

In the meantime, Randy has walked 5000+ steps for each of the last two days and the fuzz on his head just keeps growing.

Journal entry by Serene Matthews

2019 - Come on in!  We are absolutely ready for a new year!  We thank God, and all of you, for helping us through the worst of 2018.  We were absolutely ready to turn that page and hope and pray for better times going forward.

When we left you a few days ago we were newly landed back in our trailer facing a five day hiatus from Mayo.  Randy spoke with the on-call doctor on day 1 regarding a concern and has since done very well managing his stuff.  

We had been walking around the park several times a day but yesterday it turned cold and rainy.  It is even supposed to dip below freezing for the next couple nights.  (Eye roll from all of you in the north, I see it.)

Tomorrow afternoon we journey back to Mayo to see Dr. Tyson and HOPEFULLY Randy will get the final stint and catheter removed.   

Thanks again for your support along this journey.

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 are working with a surgeon who specializes in  neobladder surgeries,  doing 1-2 per week.   Randy had intensive chemotherapy for about eight weeks.  Surgery  will be in mid December.

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.