Back on the Road after nearly two years

2,000 Miles - Route 66!

Things can occur that make travel difficult or impossible. This post will be different and will be about how my life's plans were altered. In fall of 2022 I suspended trekking. This is a summary of my experience.  I became aware that I had a serious illness, and RV travel became impossible. However, after a long and difficult treatment I was able to resume trekking in late Summer of 2024. Treatment continues, but my medical leash is now longer and the risks are fewer. So, with doctor's approval we took a 4,000 mile round trip in our Roadtrek. 

We returned to our summer "cabin", which is actually a 30 ft travel trailer on a campsite in Michigan.  We had used this as a summer retreat. It is at the eastern shore of Lake Michigan and that location  allowed us to kayak on that lake, and to enjoy the farm stands, local restaurants, the Michigan wine country shoreline, and travel as far as the UP, etc. 

Our Michigan campsite

However, we had to suspend travel because I was diagnosed with an inoperable stage IV cancer.  It is a rare cancer, and only about 15% survive.  My hemoglobin (HGB) bottomed at 3.6 and blood infusions were necessary.  We relocated so I could get treatment, and a medical team was assembled.  In 2023 aggressive treatment began. It included chemotherapy, but the drug of choice was unavailable to me because of short supply and my age; it was being rationed to younger patients.  There were blood transfusions to raise my HGB to 7.0 (normal is 11.5-13.5), and chemo could not be administered, nor would I be released from a hospital visit if my HGB was below 7.0.  One doctor suggested I consider hospice care, but I declined.  Using a walker I was mobile, etc. so I wasn't ready for that. There were many sessions of radiation therapy, additional blood infusions, multiple cycles of chemotherapy and finally I began immunotherapy.  

I'll complete one year of immunotherapy in October. One of my kidneys was collateral damage and ceased to function properly.  I was given first one, then a second nephrostomy tube. These require replacement (exchange) every 2-4 months.  That was the end of water and other sports for me. The tubes make certain movement impossible, and any quick twists, bends, etc. tug at the sutures and could displace the catheter in the kidney. That happened, once!  Even stubbing a toe, as occurred today can be painful, if the sutures are pulled.  Bouncing in an RV or car seat can also be painful. 

Typical Nephrostomy tube Exits through the back

Nephrostomy Diagram - tubing exiting through the back

It has been a very difficult two years.  However, my doctors have been incredible.  There have been issues of course.  The disease is debilitating, and my body weight dropped from 170 to 135 lbs. Strength and stamina took a hit. I was on a strict diet. There were and remain some side effects to deal with. At one time I had a pseudomonas infection, and I've undergone seven hospital stays from a couple of days to a week in duration, as well as the many procedures. Each treatment can require a couple of hours, or four or more.  I had radiation treatments 5 days a week for many weeks.  My radiologist told me "you are made of Stern Stuff" as the dosage was increased. A port was installed for infusions; my body had a reaction to this, but I resisted removal, pending the outcome of cultures to determine if there was infection (there was none). There were four chemotherapy cycles; each cycle was nine treatments, one per week. I had reactions to the drugs, but overall, my reactions could have been worse than they were. I'm currently completing a year of immunotherapy.  Throughout I have attempted to avoid being a burden to anyone, but with limited success. I undertook mental exercises to assist me in dealing with this and facilitate healing. 

The financial cost for this has been staggering.  I'm fortunate that my insurance has paid for most of it.

The treatments have been effective.  My weight has recovered to 150 lbs., which my primary care physician tells me is acceptable for my height and frame Most recently I have been on a very short medical leash, with an immunotherapy infusion every other week.  This made travel difficult.  However, because of my response to the treatments it has been possible to occasionally delay an immunotherapy session so that one occurs every four weeks.  That interval permitted some travel.  MRIs and C-Scans do not currently detect the presence of cancer, and my blood work is good.  I'm "stable". However, it is likely there remain a few cancer cells in my body.

Throughout, I received a lot of moral support and prayers. I really didn't know how many people cared about me. I'm on the planet today because of the grace of God, many prayers, my spouse, my incredible team of doctor and nurses, my tenacity, and the assistance friends.  I had led an active lifestyle and dealt with an unusual amount of adversity over the years.  My doctors tell me that these things contributed to my positive response to the disease. I never thought those earlier problems would train me and give me the fortitude to deal with this.

 When the full nature of the disease was revealed, I told a doctor that I wanted the cancer (this "thing") out of my body, although it was inoperable. I had decided to do everything possible for myself, and to empower my medical team.  I reasoned that if they won, I won. I became an advocate for myself.  I studied the illness and became educated about it.  I asked questions when it was prudent to do so and kept notes and a photographic record.  

We had been living in a 41+ ft. 5th wheel, but that became unsafe and impossible to navigate using a walker. We lived in a hotel for a month while we looked for a ranch style house to live in. With the help of friends in the area, we found a suitable home. When we moved in, we purchased a bed and moved some lawn furniture inside.  We began with a clean slate.  The decision to purchase was very difficult, because we (my spouse and I) were dealing with the illness. The future was an unknown.

I progressed from a walker, to using a cane, to walking unassisted. I can take a walk of a mile or so, and I do use a stationary bicycle.  I no longer trust myself on an untethered one.  I've gained 15 lbs. and hope to gain more, although my primary care physician tells me my weight is good for my height and frame.  

We are waiting for the completion of this year of immunotherapy and hope we'll be able to travel regularly.  I've been striving to live a normal life, but I realize it is a "new normal" and may be short. It is likely I'll have the nephrostomy tubes for the rest of my life.  

Note: in March 2024 we drove 7.4 miles to the Pima County Fairgrounds for the annual FMCA RV convention.  I don't consider that to have been a "road trip".

(c) N. Retzke