Recently, I made a social media post about my husband having kidney cancer. I did promise I'd share the "how we found out" portion of it. To share his story in a way feels a bit like a mission...so here goes.
For some time now my husband's PSA numbers were climbing about a half point a year. They were climbing to a level that was about 5 years ahead of where they should be for a man of 61. Middle of May he had routine blood work and a week later he had his follow up with our nurse practioner. They discussed his numbers and Nick(np) told my husband that insurance wouldn't cover anything just yet but, probably by late fall his numbers would support what would come next. That was at least good news for right then. A week later on Tuesday, Hugh went to the bathroom and it looked like it was nothing but blood. He didn't mention it to me until the next morning and I told him he had to see Nick that day that he likely it was another UTI. Notice how I said "another." Several years ago, I think right before covid he had his first UTI this was a sign we just didn't know it. That time he just went to our local urgent care, gave him antibiotics and all was well. Until now. When he saw our NP he did indeed have a UTI. Hugh mentioned to him that he had one a few years before. Now our NP could send him for a CT scan, as a man with elevated PSA and UTI that would be fine with an insurance company. Hugh couldn't get schedule until the next week for the scan so that brings us to the last week of May. Should you recall, we moved John to Valdosta that very week and I had already gone to assist in the final packing and cleaning. Two hours after Hugh had the CT scan Nick calls and tells him that he has a 5cm mass in his left kidney. He calls me immediately and I have to say I was stunned...in shock if you will. It was a hard weekend with all the driving and cleaning and moving and now what was going on in his kidney! That Friday evening even though neither of us had an appetite we went to an Applebee's. We sat right there and he told me all the financial things I should know, what I should do with this and that and since that night we haven't had any other talk about that kind of stuff.
Late the next week he had another CT scan with contrast. This report used words like malignant mass. The next step was to see a urologist which took another week, no one had any sense of urgency. We saw the urologist and he scheduled a cytoscopy/biopsy for the 25th of June.
Recovering from the biopsy was tough. My husband is incredibly active...goes to the gym every day, gets on that eliptical and stays for 45 mins +, he kayaks almost every weekend spring and summer and does wildlife photography which is physical believe it or not. He had never had anything health wise wrong so, he had never had any procedure that was like this. As I drove him home he grimaced the whole way, he was in pain. He also had a stent that would stay in until Saturday and that isn't pleasant. The next morning he gets up and heads to work. To my suprise he doesn't come home until about 3. Still miserable. Thursday he goes into work but comes home even earlier. Friday is finally here and I am trying to get stuff in the car to leave on vacation. Hugh comes in the door at 9am and I promptly call the dr and say he needs to be seen. At this point, I send Andrew and Anna on ahead of me to St. Simons. The gal that answered the phone at the dr office tells me that they close at noon and he needs to come right now and that I should come with him. To be honest, the nurse practioner we saw that day didn't do much. He suggested he could be constipated....all the pain meds do this. Back home I get him settled into bed and I leave for the beach. Now at this point ya'll are thinking why did I leave him and why didn't he just go with me then. He was in no shape to really travel, he was most comfortable when he was laying flat in the bed and he assured me he was ok for me to leave. Next day he gets up and heads to the beach which frankly, I thought he'd never make it and we'd have to go get him. When he finally got there, we put him in the elevator up to the condo and we unloaded everything he needed. That was Saturday and he didn't try to leave the condo until Monday and that absolutely wore him out. At least he had pretty scenery to look at.
I will say this vacation was the most relaxing in terms of not rushing here and there to do all the things. We sat and enjoyed each other right in this spot. Most of our meals were right there at that little table.
The next week we met with the urologist again and he tells us that the cancer is low grade, noninvasive and it was in the upper renal pelvis of the kidney. Ya'll I know more technical terms in regards to the kidney than I'd have ever imagined. There is so much more to the kidney that I'd ever thought. To make this understandable for normal folks like me...his cancer is in the upper part of the kidney in what I'd call a chamber (actually it is called the caylex or renal pelvis). The urolgoist presented 2 options...remove the kidney or perform an ablation and then do chemo. Most of this time we assumed the kidney would have to go. While at the beach I met a lady in the needlepoint store there and her father had the same exact thing Hugh has. I'll tell ya'll about that another time! She had real knowledge of what kidney removal would be like!
Hugh had read alot on the internet about having an ablation and right then and there he agreed to do that! He is the first person that fit the right circumstances at our local hosital to have this done there.
Another week later we are finally at the hospital to have this procedure done. We were met by one of the pastors from our church along with the hospital chaplain that was ask to be there by another one of our pastors and a very sweet lady from the sewing ministry at the church. After they hooked Hugh up to all these things they then tell us that an emergency had come up and he was being bumped for 2 hours. They also told us that they would not be putting the nephrostomy tube in that day. This is what the chemo will be administered through. Here is a bit about the type chemo he is having: it goes through the nephrostomy tube directly into the kidney in the form of a gel. The actual brand of the chemo is called Jelmyto. The gel goes into the kidney and stays there in gel form for some 4-6 hours and then he simply will pee it out.
Hugh did remarkablely well from this procedure, way better than the biopsy! He had that on a Thursday and went back to work on Tuesday. During the ablation the kidney was so full of debris that the dr told me he got to a point where he couldn't see well. He also mentioned that the mass is much like a carpet in that chamber of the kidney.
Hugh had another ablation yesterday along with the nephrostomy tube put into his back to the kidney. He will have chemo for 6 weeks. He slept well last night and seems to be doing better than we expected.
So here is the long story short, we found out all of this from a simple UTI which is not common for men to have. Should your husband or a man in your life ever have this, knowing what I know now I'd insist on a CT scan!. Oh his prostate was fine...nothing wrong with it!
Here is a quick time line to show how things went:
May 21 blood in urine
May 22 app with nurse practioner
May 30 ct scan without contrast
June 7 ct scan with contrast
June 17 saw urologist
June 25 biopsy
July 25 1st ablation
August 15 2nd ablation/nephrostomy tube
To everyone that has sent messages, texts, calls, cards and most importantly have prayed for Hugh we have absolutely felt them! Many thanks to our church family at Trinity Church in Opelika for all the love yall have shown!