Three Years Later - Medical Update

My posts have become intermittent. 

This is an update and provides an explanation for my intermittent posts, and gaps. In 2022 I became gravely ill.  After diagnosis the doctors said that my illness was inoperable, and that I had at best a 15% chance of survival.  In Spring 2023 it was suggested that I go into hospice, but I declined.

What followed was several years of radiation therapy, chemotherapy and immunotherapy.  It was a very difficult two years.  My life had been upended, and casual travel was completely suspended, with none in 2023.  My 'medical leash' was very, very short.  In that year the 4,000 miles of travel via automobile was for medical purposes.  There were radiation treatments 5 days a week, frequent chemotherapy, then immunotherapy and many hospital stays and several trips to the emergency room. 

More recently I was diagnosed as "stable" and I continue to challenge my condition and attempt to live as normal a life as possible.  So, in 2024 we resumed some short-duration RV travel.  In 2025 we took a much longer trek, both in time and duration.  These trips were accomplished by scheduling certain medical procedures to provide windows of opportunity.  My spouse now does about 20% of the driving, sometimes less.  

The nephrostomy tubes are my primary physical limitation, although my stamina and strength also took a hit.  At one point my body weight was 20% below my "thin" weight.  Tube flush occur daily, and wound care is a regular routine, usually every other week.  These can performed at home or on the road, unless there are issues such as infection.  I carry a large plastic bin with the necessary medical supplies, some of which are not readily available at the pharmacy. Because of this, and to accommodate other procedures I do have a medical leash, and there is always the possibility of unforeseen problems including tube failure, kidney failure, infection etc. Discomfiture is a constant companion but is the least of my concerns.  Plans for travel include an abort if there are medical issues.  While air travel is a possibility, I have a compromised immune system and airplanes are a petri dish I prefer to avoid.   That does restrict travel opportunities.  I have a procedure coming up in a few weeks; this is a regular nephrostomy replacement, which occurs every few months.  Then CT and MRI scans, blood work, etc.  Medications can be filled while on the road, so that has never been an impediment.  I am on minimal medications.  An iron supplement, blood pressure medication to protect the kidneys and vitamins.  That's it.  I avoid paid meds.  I prefer the awareness of what's going on with my body.

Typical Nephrostomy Wound Care Bandage

However, while I've had a miraculous recovery, I am not healed.  I am in continuous decline.   "Stable" does not mean level. Tests in October may determine how serious that decline is. There was an expression "One foot in the grave" and I now more completely understand the meaning. 

Nevertheless, we continue to plan for a future, although it is indeterminate.   In fact, I'm quite fortunate.  According to family history, I've lived longer than might be expected.  Keeping all of this in mind we are beginning a patio project, which will take place in October, and we are in the midst of some drainage improvements on the property.  We do have some travel ideas for 2026, but nothing concrete.  That's the way it has been since 2022.  We discuss ideas, but plans are tenuous.   I do have a 200W solar panel to install on the Roadtrek. This will occur when the monsoon season ends. I don't think farther into the future than 6 months. 

I've made other changes, too.  My formal writing gig has ended.  That's another subject altogether and the reasons were not only medical.  Let me simply state that recent events, both political and otherwise have made it impossible for me to remain silent and "non-political".

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Note: No AI tools were used to produce this blog. Most photos are unretouched.

(c) 2025 N. Retzke 

Grounded

 

 

Part of a wellness package sent by my employer

In 2022 I discovered that I had a life-threatening illness.  Well, that put a crimp in our trekking.  We travelled from the Midwest to Arizona in December 2022 and became residents of that state in 2023.

Medical treatments became my primary activity.  At one point my hemoglobin was 3.7.  My primary care doctor couldn't believe that I could walk into her office.  Shortly thereafter I was in the emergency room of a hospital where I was administered two units of blood.

My life in 2023 has focused on dealing with my medical condition.  We never made it to our summer location, a Caliber travel trailer on the eastern shore of Lake Michigan, but plan to do so in 2024.

Caliber at Michigan campsite

After achieving some medical stability, I underwent several surgeries, radiation treatments and then chemotherapy. I'll begin immunotherapy on October 30. How am I doing?  My radiologist told me that I'm made of "stern stuff".  However, it has been difficult, with about 17 units of blood administered since April, and numerous hospital stays and surgeries. After a recent surgery it was determined that I had sepsis with a pseudomonas infection. I've been on some serious antibiotics and am currently about 11 days into 13 days of taking cipro (Ciprofloxacin).  This necessitated removing my nephrostomy tubes and installing new ones. 

We are planning on resuming trekking in 2024.  We signed up for the FMCA's 108th International Convention & RV Expo Pima County Fairgrounds, Tucson, AZ.  This will be held March 20-23, 2024. 

We'll be selling our 5th wheel.  Our primary trekking RV will be via our Roadtrek 210P.

I found maneuvering in the Cypress to be difficult, so G and I decided to purchase a home in the resort.  This had been our long-term plan.  My sudden change in health afforded the opportunity to make this change. G had been monitoring available homes and friends in the resort alerted her to one that was about to come on the market. She compared it to several others that were on the market and decided it was the best choice.   

After we both looked it over, we decided to make a bid and voila' we are once again homeowners.  So it seems we are official Arizona residents. 

We are currently furnishing the home.  This has afforded the opportunity to do things over.  For example, we purchased a steamer-convection oven rather than a microwave.  The Roadtrek and Cypress have microwave convection ovens, but we decided the convection oven feature was more important. 

Steamer-Convection oven

I've resumed my financial writing and blogging, but I'm not sure how frequently I'll be blogging.

Note:  The resort we are at has been described as a "Mega-resort".  It has RV sites, Park Models for sale or rent, and homes.  Some RVers sell their rv's after a few years and move into a park model.  These are 400 square ft. or larger.

(c) 2023 N. Retzke