Randy had an appointment with a cardiologist yesterday as a follow up to his pulmonary embolisms earlier this year.
This doctor agreed that the clots are likely resolved and agreed with the primary care physician's plan of keeping Randy on Eliquis through August. And because he is a heart doctor, he looked at Randy's scans and family history from that perspective.
He thinks Randy's heart and arteries look good for someone 60 years old. That was good news! Then the doctor delved into family history and because Randy's dad had significant heart issues, he wants to follow up in a few months. His strategy is to prioritize the urologic and neurologic stuff first but then "when the dust settles" be sure Randy is in a good mode going forward for his heart.
That will involve diet, exercise, baby aspirin and potentially statins as a precaution. You can change what you can, but you can't change your genes.
Randy has had a couple appointments the last few days and for the most part all is well. He is still getting fatigued easily and occasionally has to take a Tylenol and go to bed early but that is working.
Today he had his final steroid treatment for his hand pain. He completed his medication regimen while on the cruise. The pain is gone but he still has some numbness in two fingers which may or may not ever completely go away. Nerves heal slowly.
Yesterday he met with the "outside of Mayo" doctor monitoring his eliquis for blood clots (which are mostly dissipated.) She anticipates he will stay on eliquis until August. She would like to have his port removed as it is no longer needed for steroids and is an infection risk. That will eventually be done at Mayo but his surgeon doesn't want to have any part of that while he is on eliquis as it is a blood thinner.
Medical impasse....If he keeps the port until August, he'll have to have it flushed every four weeks.
He has an appointment with another Mayo doctor on May 14, a vascular cardiology expert, for a consultation on what the blood clot occurrence mean for life and the risk factors going forward. Hopefully that doctor will have an opinion to solve the impasse.
Meanwhile, tomorrow we start the trek towards Tahiti with a car trip to Tucson and a flight to Los Angeles. The airline tickets were purchased way back last August before of any of this came to be when we expected to be in Tucson for the winter. It was much less expensive to just to keep them the way they were.
Randy has compression stockings and an isle seat as precautions for the long plane ride. We appreciate your prayers for a drama free flight and an enjoyable, relaxing 10 days in Tahiti.
The Coral Princess is pulling into port in Ft. Lauderdale and we are preparing to go have breakfast and then to vacate our cabin. Today we have a long day of travel back to Mesa.
We have had a very nice cruise and I’ll be doing a couple blog posts later but the important part is that Randy made it through without medical drama. The humidity of Central and South America sapped his strength on many days but overall he did well. He says he feels like he is operating at about 80 percent.
In the midst of EVERYTHING else, we've been looking for a new home! We just weren't ready to take off in our beloved trailer for an extended trip with some recovery yet to go. We're keeping the trailer and plan to use it for short trips in the near term. We hope to do our extended trip next year and definitely plan to FINISH OUR MAP!
The root cause of Randy's crashes, one each in January, February and March, remains unclear. Dr. Tyson had thought urinary tract infections but lab results were always negative. They thought perhaps it was the blood clots in February but there were none in January and were certainly diminishing in March.
The one constant we noticed is that they occurred when Randy tried to walk to regain strength - after tipping that 10,000 step threshold in February and again in early March. He always insisted he wasn't walking aerobically or trying to push it, he was just walking.
Our friend Kris, whose granddaughter underwent years of chemotherapy, told us that their oncologist connected chemotherapy and fatigue and fever. The doctor's comment wasn't as direct as cause and effect, but we know Randy still has chemotherapy residue, and his events happened after more exercise, he later became very fatigued and spiked the fever. It seems like a better guess than anything else at this point since he has been scanned and tested and absolutely nothing else is giving cause.
And a reason for cautious celebration?
Our friend Beth was here again on Saturday and we walked and walked enjoying the perfect desert evening. Combined with the incidental walking Randy had done earlier, he passed 12,000 steps for the day.
We were a little nervous - but 36 hours later - he's feeling fine.
Randy is very proactive in his medical care, which is a very good thing. He reads reports on the Mayo portal and researches unknown terminology. Everyone and everything is on the portal. He likes that and loves to give give me his interpretation of the results.
After multiple tests on Friday, he got on the portal and determined that all was well in this, his first quarterey post-treatment-surgery cancer screening.
Today, Dr. Tyson concurred with Dr. Randy’s opinion. He was very pleased with his progress. All is well. We took in a list of various questions and concerns, all of which were answered or addressed. Scan and test repeat in late June.
He is also making a physical therapy referral to address the continuing weakness in Randy’s left leg, a result of having to get scar tissue off the nerve during surgery.
There is still no good hypothesis as to why Randy has ‘crashed’ three times since surgery.
We also got to visit with Dr. Abdul, the resident who has been so awesome. He is getting ready to transition off Dr. Tyson’s service but said we can always contact him. He told us that Mayo is unique in that one resident is assigned to one attending which benefits the resident and patient, compared to other hospitals which have a team of residents assigned to an attending. We think we made the right decision in coming to Mayo even though it hasn’t been perfect.
We also saw the neurologist resident following the hand pain issue. Both Dr. Randy and Dr Jackson are pleased with the progress. Randy will complete the full 12 course steroid treatment but will start weaning off the medication when we get back from the cruise in mid April. “Theoretically” that should improve the memory situation.
Serene’s editorial comment: Hopefully it will improve his memory - period, not just to pre-medication levels!
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 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. That one was much worse and required removal of his bladder and prostate. That was 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 that formed a new bladder from small intestine. Because we are mobile, we opted to come to the Mayo Clinic in Scottsdale for treatment and 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 was 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.
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