I think I'll start with..THE UGLY.
Now some won't find this funny. I did, though. So as most of you know, LJ went in for his kidney removal surgery. He came home after five days in the hospital. They did send him home with a catheter in place. He was so happy (not). The next day we were to go to the Urologist's office to have the catheter removed. Why they couldn't do it the hospital before we left is a mystery.
So I'm waiting for LJ to finish getting ready when he yells "Hey, babe! Come look at this!" I'm thinking I probably don't want to, but off I go. He's standing there and says "Look! I don't think that's right" and he points to "the boys". I'm pretty sure my eyes got big and I said "nope..that's not normal." "Well how bad is it?" "What, you can't tell?" "No, I can't see them but it doesn't feel right." "Well picture a purple grapefruit." and I start laughing. He says it's not funny, but it kinda was. I'm thinking, daaaaaaaaamn...that has to make it hard to sit. He had a few choice words, but I assure him it's probably nothing. And, on the bright side, we are on our way to the urologist so he can take a look.
So off we go to the doc. Now I'm not going to go in with LJ because watching them remove a catheter is not high on my to do list. He goes in...a half hour later he comes out. I asked "did you pee?" "Nope. But they did take the catheter out." and then he tells me the story. Now the nurse has a routine to removing the catheter. First they fill your bladder then they remove the catheter. Then you are suppose to pee. Well, as he lays back on the table he says "Can you look at this (the boys)? Is that normal?" Apparently she was a bit surprised by what she saw and tells him "Ummm..I'll be right back." Well that had to be comforting, lol. So off she goes and she brings back the physician's assistant. She (yep, another woman) takes a look at the boys and says "Ummmm..I'll be right back." Now I'm sure having two people look and immediately leave the room has him totally at ease. So now the urologist comes in. HE takes a looks and says it's totally normal after that type of surgery and not to worry. It's just fluid collecting and will dissipate in a few days. Might be a little uncomfortable (hahahahaha) but not concerning. Whew...So the entire routine was thrown off by the spectacle that was "the boys". The nurse removed the catheter but failed to fill the bladder. They offered to put it back in and do it correctly but LJ for some reason declined. So he left with the instructions that if he didn't pee in the next couple hours to come back. Fortunately he did and all was right with the world. Well, except for the grapefruit.
But now ten days have passed and they are back to normal. I don't think he thought my asking "how they hangin' " as a morning greeting was funny. I kinda did. I have photos, but they are in my personal collection. You'll just have to visualize.
THE GOOD
His second day home was eventful. After his tube feeding in the morning he was replacing the gauze pad that goes under the disc that's up against his belly. As he was doing so, he accidentally pulls on the tube and it comes out about an inch. Welllll that's not good. They say if it moves a 1/4 inch to head to the ER. So off we go to the hospital ER. Of course my thought is we are going to spend the whole day here so I brought a book. Everyone knows how ER's are. Apparently in AZ they are very efficient. We get to the ER and he is taken right back. Within minutes the ER physician sees him and lets him know the radiologist will be in to check the tube in a few minutes. How long depended on what the radiologist was doing at the moment. I don't think we waited more than ten minutes when he showed up. He did whatever it is they do and determined the tube was fine. He added a little air to the balloon that's inside the stomach (Keeps the tube from coming out) and sent us on our way. Whole thing took an an hour from car to ER to back to car. Never even cracked open the book. This is our third time visiting an ER while in AZ (three different ones). Each time the care was quick and efficient. Impressive. But that's not the real "Good" part.
THE REALLY GOOD
LJ has seen doctor after doctor since the masses were discovered on his kidneys. As you may remember, the CT he had done before radiation started showed masses on his right kidney that were so large it definitely had to be removed. The radiologist broke the news of this cancer prior to radiation starting on the throat cancer. Good news was it was found. Although three different cancers (throat, thyroid and kidney) make LJ "special".
Next we saw the oncologist who told us the chemo he would receive with the radiation would have no effect on the kidney cancer. But, because of the kidney issue, he would have to have a special, EXPENSIVE chemo that doesn't harm the kidneys. The throat cancer is the most aggressive so radiation had to start immediately. After he was done with that the right kidney had to be removed. Based on what the oncologist has seen in her career, there was a 99% chance it was cancerous. They were just too large and too many of them. We weren't to worry, though, because kidney cancer historically is slow growing. She, in turn, sent us to the Urologist since another opinion never hurts and he would be doing the surgery. The Urologist concurred with the other two doctors. The masses were multiple and large. He had yet to remove a kidney with that presentation that wasn't cancer. He agreed the throat cancer took priority and again told us kidney cancer is slow growing. We have time. He then sent us to a nephrologist (kidney doctor) to determine what kidney function LJ had and how we were to deal with the one remaining kidney after surgery.
The nephrologist agreed with the other three doctors. 99% chance the kidney growths were cancer. Only once in his career had he seen a kidney like LJ's that wasn't cancer. LJ's kidney function wasn't great which could mean he would need dialysis once the surgery was done. Fortunately we determined his kidney function was down due to lack of hydration. This was discovered after he spent five days in the hospital for dehydration due to lack of fluid intake because of the radiation treatments. Once he was properly hydrated, the nephrologist told us his kidney function was great for his age and reduced the kidney disease stage from a 4 to a 2. This meant, if all things went well, he most likely would not need dialysis.
So now he has the kidney surgery. The urologist told both of us the kidney was difficult to remove since it was so large and just covered in masses. He also took margin tissue for testing. It looked like cancer on the kidney, but he didn't see where it had spread. Testing would make that determination. So we wait.
Last Friday we saw the oncologist. She had the pathology report from the hospital. NO CANCER! ALLLLLLL the tumors were benign. All the surrounding tissue showed no cancer. OMG. He is in the 1%. His remaining kidney will be watched. No treatment to those little spots unless they begin to grow. If they do, they'll freeze them. UNBELIEVABLE. His oncologist was very surprised but very happy. She is sending LJ to a geneticist to see if there is a reason his body is making the tumors, but all in all, good news. Today we saw his urologist. His smile was huge. He told LJ in all his years of doing this, this is the first time it hasn't been cancer. He agreed we just watch the left kidney. Removing the right kidney still had to be done. You don't want the benign tumors to get larger. It truly was the only way to be sure it wasn't cancer. Biopsy of the kidney is never recommended as it tends to make the cancer spread quickly. There was simply no reason to believe it wasn't cancer based on four doctor opinions with years in the field..based on research...and based on LJ's luck. But it isn't. It's a blessing. One less fear. He still has to maintain good kidney health which means watching certain foods, like salt, and drinking more water. Finally something good for LJ.
As for the throat cancer, his oncologist scheduled his PET scan for this week. We won't have those results for a week or two, but she is cautiously optimistic about the treatment for the throat cancer being successful. She did have us keep an appointment with the neck surgeon, just in case. In her mind an expert looking is better than a scan and certainly isn't going to hurt. So we continue to wait. But we wait with one less thing to worry about.
THE BAD
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| a little bigger than 400SF |
Ok. It's not that bad and has nothing to do with LJ and his cancer. It has to do with our house. I have honestly had about all I can take living in the tin can. I was looking forward to moving in to the house at the end of the month. But no. The builder FORGOT to get the permit to convert the sales office back to a garage. Forgot, my patooty... somebody didn't do their job. I mean for heaven's sake. We bought the house in February. The sales office shut down early June. Not a happy camper. So now it will be sometime in August. Poor David, the sales guy. He was on the phone with the bosses all day before he told me. It's not his fault. It's the corporate office. I was soooooo disappointed. Now I have to remain in the 400SF home for another month. He did get them to pay for a few more things as compensation, but what a pain in the ass.
To compound the problem, the RV park had someone moving into our spot August 1st through February 2020. They would have to try to find a place to put us, which meant moving the rv. Fortunately they like us and are aware of LJ's issues, so they spent a couple days moving things around. We will be able to stay put through August. I have made it clear to the builder we cannot extend past August. Snowbirds start arriving in September and finding long term (over a couple days) slots anywhere is difficult. As LJ has taught me. It just is what it is.
IN CONCLUSION
So...it seems our life is spent waiting, lol. I'll just be glad when all is back to normal. LJ is trying hard to get off that feeding tube. It just takes time. I often eat stuff he loves in front of him as inspiration. If I go to a restaurant I'll send him photos of my meal to show him what he's missing. I think he appreciates that, a lot. or maybe not.
It's my way of offering encouragement.😆
Scooter is doing well. It's hot so he spends a lot of time napping under the A/C.
I look forward to LJ being....well....LJ. I look forward to enjoying the new place, traveling and living life to the fullest. I want to take another cruise. I want us both to be able to see that new great grand baby. So much living yet to be done. The good thing is, in spite of chemo brain, my LJ is more and more like himself. We laugh. We tease each other. We love each other. Life isn't necessarily easy right now, but it's what we have and beats the alternative.
Keep those prayers and good thoughts coming because I truly believe they work.💗
