I'm Back to Blogging After Kidney Cancer Surgery

Dear Friends, I know you may have been wondering why I have not written an entry in nearly two years. I have gone through so much, as we all do. This road is a tough and lonely one. The combination of multiple system atrophy and corticobasal syndrome are enough with the added challenges of the tracheostomy and feeding tube. The COVID 19 pandemic was a huge inconvenience for all of us, and for many, it meant the terrible loss of family members and friends. I found myself becoming quite inward and the progression of my disease, with the autonomic dysfunctions and increasing immobility, were weighing down my spirit. I became more and more convinced my days were getting shorter on this earth. When my lifelong friend, the Rev. Dr. Jay Bartow, who had been my pastor in high school, passed away in the winter of 2022, I was left with the feeling of great disappointment and sadness. Somehow, we had to find a way to go on. Thankfulness and looking for the good that can be found in each day are two avenues to pursue when times get darkest. You may relate to this kind of experience. 

Then, in the early spring of 2023, my G-tube was creating problems in my stomach. It began to fester and I felt pain. Just the weight of it hanging from my abdomen was painful and I knew, once again, something was up with it. Karrie checked to see if I could get in to see my gastroenterologist, and the conclusion was that this couldn't wait. We were directed to go directly to the emergency room.

While there in the emergency room, the doctor was able to determine that my G-tube would need to be removed and replaced. A CT with contrast dye was conducted to get a view of the state of the balloon holding my feeding tube in place. From this imaging, the problem was understood and the tube was removed and replaced. The pain subsided and the doctor approached us to discuss the conclusions he had drawn. Then, the next shoe dropped. He said, "Some masses were observed in your left kidney and your liver. You should follow up and see what your doctor recommends for you to do next." 

We made an appointment and it was determined by the gastroenterologist that I should have another CT scan of these masses. It was scheduled and conducted within the next month. The results were read and the gastroenterologist explained, "The liver mass is stable for now, and we will recheck it. This kidney mass is concerning for cancer." "I recommend you see your urologist right away." 

We were able to get in to see the urologist within a few days and he reviewed the resulting scans on the computer. The mass had grown and his impression was definitive. "This is likely a cancerous mass and needs to be removed. It is buried deeply in the center of your left kidney and therefore it won't be possible to remove it by doing a partial nephrectomy." He indicated that the entire kidney would need to be removed. This procedure is called a radical nephrectomy. 

I subsequently I had the surgery on June 13, 2023. All went well and required a 6-day stay in the critical care unit of the hospital. Special provisions had to be made for me due to my liquid G-tube feedings and the need to be hooked up to a ventilator each night as I slept (I sleep with a high tech ventilator each night at home as it is required to prevent sudden respiratory failure while sleeping). I was discharged the night before my 68th birthday. We received much support from our sons and their families. The guys, Daniel, Mark, and Stephen all spent time at the hospital. What a blessing they were! Karrie needed that support and it made all the difference. Karrie came each day from the beginning of visiting hours until they tossed her out at the end of the visitation time allowance. 

 The pathology report did come back and the conclusion was that the mass was indeed kidney cancer, stage 3, and that it had been removed with no spread apparent in the region. I was relieved that the margins appeared to be clear. Thanks be to God!  

I returned to the urologist, who had conducted my surgery, and my staples were removed from the center-line of my abdomen. It became apparent fairly quickly that something wasn't right. Our urologist urged, "You will need to go to emergency directly. I need to get you into surgery today." My wound had opened up without the restraint of the staples and began to allow my intestines to protrude out of my body. This was undoubtedly the result of the much coughing I have to do on an ongoing basis to clear my trach opening that gets clogged with fluids. It was impossible to avoid the strain this coughing and clearing had put on my surgical wound. The condition of my open wound was more dangerous that I realized at the time, but I felt calm and had trust that God would guide my surgeon and the team to get things straightened out. 

Karrie bears a great deal of responsibility. This was weighing heavily on her mind and her thought process "wheels were turning". She knew as she drove me to the emergency room that this was serious business! It didn't take more than 2-3 hours for me to be an operating room again. All of my insides and affected areas were washed with sterile water and antibiotics. My organs were rearranged, for a lack of a better way to describe it, and I was once again closed up. Special care was taken to get the area carefully stapled and sutured. I must give much credit to this wonderfully dedicated physician who took such care to be sure I did not get an infection or have another problem with the healing of this incision. I stayed in the hospital 2 more days. 

Now, 7 weeks have passed and I have seen all the pain subside. The wound has healed well and I am feeling back to my normal "abnormal." Once again I am filled with gratitude for Karrie, who cared for me as any nurse would have so well. Our sons and their families were there between these two surgeries to celebrate my birthday all gathered around my bed. All 14 of us were together and the love was palpable! I can't help but be filled with gratitude for the goodness of our family and the professionalism of our doctors, hospital staff, home health nurses who visited and the physical therapists who provided exercise to get me to the point where I could get out of bed after a week at home. 

At this point, I am going to need to be more conscious of my single right kidney. It will need to be babied and paid close attention to in order to keep its function effective and healthy. The cancer does not appear to be present for the time being. This too will be carefully monitored for a number of years. I feel confident that it is gone. Just added concerns to accompany those Karrie and I are contending with due to multiple system atrophy and corticobasal syndrome. 

I have renewed interest in communicating and sharing those things I am able to through this blog. I intend to keep it up and I hope you will again be a regular reader. Please feel free to write to me below or to my email me at danstune@aol.com. I would love to hear from you and receive your questions and feedback. -- Dan