I didn't want to write about this until I knew how it all turned out. Any of you reading about this for the first time please be reassured that the story has a happy ending, even the part about the IRS!
About a month ago Lee had some blood in his urine. Last Friday he went to see a urologist. They did a sigmoidoscopy and by Sunday he had a fever and was having trouble peeing. He went to urgent care and they did a culture and put in a catheter. The catheter is a bummer but that’s not the half of it. It took until yesterday to get at least partial results from the culture. Yes he has an infection so he’s now on amoxicillin. Also yesterday he had a CT scan and when they called with the results it turns out he has a kidney tumor.
Of course we are freaked out; its probably cancer, they almost always are cancerous. We have a consult with the urologist on Friday when we will know more. We know he will have surgery probably pretty soon, to get the tumor out. They don’t think its spread, which is of course good news. The most common sorts of kidney cancers have a 90-95% survival rate, so that is also good.
My worried mind is of course venturing into the worst possible outcomes but I’m not that much of a wreck as yet. I wonder how soon the surgery will take place, and then of course, I wonder what they will find and what our course of action will be. I worry about the logistics; the holidays, babysitting for Leo and Kirby, Lee’s recovery and possible treatments.
I’ll write more about all of this after Friday.
We met with the urologist today. First they took out the catheter. Lee was able to pee and felt better almost immediately. They gave him some self-Caths just in case, but he really hopes to not need them.
Then we talked to the urologist. He said the scan shows that the tumor is about 2.5” in diameter, so not tiny, but not huge either. It appears to be localized, which is very very good, but because of where it is located in the kidney they are going to remove his entire kidney, plus the fatty tissue around it, and the neighboring lymph nodes. Then they’ll biopsy it. It’s almost certainly cancerous, 90% of kidney tumors are. But if it hasn’t spread, and it’s not a high grade, no other treatment will be required. They will just continue to monitor him.
The surgery will be scheduled for sometime in the first half of December. The surgery will take a couple of hours. They will go in laparoscopically, but they’ll also go in by hand to actually remove the kidney cause it’s too big to fit in through a little cut. He’ll be in the hospital for probably 2 days. Because of Covid it is unclear whether I will be able to be there or not. He will have a Covid test before surgery, and if that test is negative he won’t have to quarantine when he comes out of the hospital.
So that’s all very good news. Now we just wait to get the surgery scheduled and hope that the results are good once the kidney comes out.
Interesting tidbit. The event that started all of this, the blood in his urine, is actually fairly unusual. Most kidney tumors cause no symptoms so this one appears to have been caught rather early. We can hope!
The surgery is scheduled for December 18th. Lee will have a physical and a covid test on the 14th and after that he will have to self-isolate. The paperwork from the hospital says I should self-isolate too. It also says he will go home the next day. It also doesn’t say that I can’t be in the hospital but I’m still assuming that’s the case.
We are starting to watch Kirby off and on on Monday’s and Friday’s. Suzanne is watching him on Wednesdays too. At 8 months he has gotten increasingly mobile which makes it pretty hard to watch him and work. It’s not forever but we can help them now and I’m glad to be able to do it.
Kirby is a great baby. He’s really good natured, seldom fussy. It’s pretty easy to figure out what he wants. He takes 2-3 naps a day. Sarah comes over around 9, we play for a little bit, and then he takes his first nap around 9:30-10. When he gets up he’s hungry. He’ll eat baby food and finger food. Today it was Cheerios and bananas.
Now he’s playing on the floor. I have a blanket spread out. I put him on his tummy and put his toys at the 4 corners of the blanket. On his tummy he goes in a circle, but soon he has flipped himself on to his back and then he really moves! He ooches across the floor using his legs and his head and back and just keeps going until he reaches a wall or gets wedged somewhere. I’ve ordered a playpen because otherwise there’s no telling where he’ll end up!
Sarah works here on the days she brings Kirby cause he’s still nursing several times a day and it’s easier than pumping. Unlike Leo he has no trouble taking a bottle and he will probably take one after his second nap, around 1 pm.
He says dadadaDADADA! He coos, blows bubbles, and periodically lets go with some ear piercing shrieks, like some wild animal in the zoo. He is quite pleased with all the noise he can make.
As I get more familiar with him he’s really easy to figure out. He gets a little fussy if he’s hungry or has a messy diaper. When he’s sleepy he’s start yawning and sucking his thumb.
He is a baby that needs to burp, so if he’s fussy and it’s not naptime or time to eat, that’s probably what’s going on.
Also the dogs, especially Harper, are enamored with him. Harper wants to be near him, and watches him contentedly.
This won’t last forever. Sometime in the next 6 to 9 months at least Lee and I will be able to get a vaccine, and then I would expect that the kids will go back to daycare. I really can’t imagine what the next phase will look like.
We watched Kirby again yesterday. It was a nice day. Sarah got here around 9:00. I set up the playpen and put Kirby in it. He is intrigued by the new bright blue somewhat slippery surface. He can’t get quite as much traction when he tries to oooch on his back so he gets a little frustrated. He’ll just have to figure out how to crawl the proper way!
His morning nap wasn’t very long, maybe 30 minutes. Then he ate some cheerios and banana and an entire pouch of baby food, AND he nursed. I put him in his bouncer and he enjoyed playing with toys and throwing things overboard. He has a chew toy that is a rubber giraffe that squeaks and Harper WANTS that toy! If Kirby throws it I have to be on top of it otherwise Harper will abscond with it in a second.
In the afternoon he took a LONG nap. He went down at 1 and didn’t wake up until 3:30. No need for a third nap! He nursed again and then I gave him a teething cracker. Its so funny to watch him eat it. His hand coordination is still a work in progress and the dogs seem to know this and circle his chair, watching intently. I watched too, so that nothing fell on the floor (or not much anyway).
When that was over we had some one on one time. He loves Patty Cake, and Hoppa Hoppa Rida, an old German rhyme that involves bouncing on my knee and pretending to fall off the horse at the end. If he could say MORE he would! He’s got the best laugh.
Then we walked around the house, making sure all the Christmas lights were on and before too long he and Sarah were on their way home.
I’m still crocheting like mad. My December kit was delayed at the post office so I did the 2nd afghan first, since the instructions and the video show up online before the actual kit arrives. I finished blocks 10-12 and the kit STILL hadn’t arrived so I checked my yarn amounts and decided I probably had enough to start a THIRD afghan too, so I did. Its kind of fun to go back and do the first blocks again, that caused me so much trouble at the beginning. Three afghans at the same time are enough, however. No more now until at least one is finished!
Well today was the big day, the day of the surgery. Lee was on a liquid diet yesterday afternoon and then had to do a prep. Nothing by mouth after midnight. Neither of us slept very well last night. I got up at 4 am, ate some oatmeal, took a shower, got ready. I wasn’t sure how long I would be at the hospital, so I brought lots of reading material, my crochet work of course, and a snack. We fed the dogs early and put them in their pen. Sarah would come over and spend the morning with them while she worked. She could feed them lunch if I wasn’t home by then.
It took about 30 minutes to get to the hospital. It wasn’t that hard to find, I only took one wrong turn. We parked, went in, and followed instructions. First we went to the check in area. We waited there for a little bit and then they took us to pre-op. We waited there for almost an hour before they finally came to get him. That’s the last I saw of him. I followed these blue arrows on the floor to the surgical waiting room. They set me up with a text messaging service that let me know how his operation was progressing. It was pretty cool, they told me when it started, when they were closing him up, when they were finished and the surgeon would come talk to me.
They had said it would be around 2 hours, but it didn’t actually take that long, maybe an hour and a half, at most. The surgeon said it was very localized and he thought it went very well! We have to wait for the pathology report and that could take awhile, but things are looking good. I tried not to think about what could go wrong, but you know it was in the back of my mind. I was relieved!
They told me it could take hours before he could go to his room, so I decided to go home. Even if I waited I would only get to see him fleetingly as they rolled him down the hall.
I was glad to be home. I hugged the dogs, took it easy for the rest of the morning. I’m pretty tired, like I haven’t slept, and maybe I haven’t. I did take the dogs for a long walk around 2:30. I’m going to have pizza and a salad for dinner and I’m going to bed early.
And its a good thing I didn’t wait around. Its almost 4 and he’s still in recovery. No rooms.
The shortest day of the year. Lee finally got a room. By 9 am the next day he was off his IV and catheter and walking around. They discharged him around 3. I stopped at Home Depot and picked up an elevated toilet seat and then picked him up. He was sore but on drugs so not in a lot of pain. He basically came home and went to bed.
The next day, yesterday, he migrated to his chair in the living room, and spent the day there. He hadn’t farted yet. The gas in his stomach cavity from the surgery was really uncomfortable but we were concerned about getting his bowels moving so he stopped the oxycodone and tried dealing with the pain with just tylenol. I did some research and got him a mild laxative and some sugarless gum and he tried both of those, plus a little walking and a heating pad. Late in the afternoon he farted a little bit, so things were starting to move at last.
That afternoon at 4 pm we had a zoom birthday party for Joanne. It was lots of fun, and nice to see everyone. He sat on the couch next to me and stayed alert and participated in the call, but by the end he was really tired. He tried to eat some beef noodle soup but just wasn’t hungry. He went to bed at 6 but started having a lot of pain so he ended up taking the oxy a few times last night after all.
In the middle of the night I heard him fart several times, and this morning too. I think maybe his bowels have turned the corner and he’ll start to feel better.
Meanwhile we have something crazy going on with the IRS that I need to deal with today. They think we owe $120,000+ in taxes on the sale of the house in New Hampshire in 2018! It can’t be right but its hard to know where to start. The title company that reported the sale? The IRS? Turbotax? I guess I’ll tell the IRS we don’t agree first and then take it from there. I may have to get an accountant or a lawyer to help us. I got the letter from the IRS on the day of the surgery, of all things. Lee is usually the one that does our taxes so this is a big deal for me, but he just doesn’t have the strength to deal with this right now. Ugh!
On a brighter note we’re supposed to get the food from the Personal Chef that Sarah ordered us today. The company is called Annie's Home Cooking and her company got it for her when Leo was born and she really liked it. I’m looking forward to it, but I wish Lee had more of an appetite. Sigh.
Yesterday, with a little help from Lee, I dealt with the IRS. First I called the title company in New Hampshire that had reported the sale of the house and made sure they hadn’t done anything squirrelly. They hadn’t. I tried calling the IRS but the wait time to talk to a person was between 30 minutes and an hour so I decided not to bother with that just yet. Lee does our taxes with Turbo Tax and he pays a little extra so that we have access to their accountants in case we need help. This turned out to be a VERY good use of our money!
He got into their program and after a little confusion, figured out how to call them. The CPA we got was WONDERFUL! I talked to her, since Lee just doesn’t have the stamina yet. Turns out for some reason when we filed our taxes for 2018 we didn’t file a form that reports the sale of a house, probably because we didn’t owe any taxes on that sale. Anyway, she walked me through the steps involved in filing an amended return that produced the form (Schedule D and Form 8949 if anyone cares). Of course when we filled out the form we didn’t owe anything, but I printed it out and attached it to the document we needed to send to the IRS saying that we disputed their claim.
She told me to mail it certified mail, receipt requested, and I lost no time doing just that. She said the IRS is so backlogged that it could be months before this gets resolved, but it will. She said its possible that we will get another letter from them before they are able to process our documents and if that happens I have to call them and possibly fax the documents to them, but we’ll cross that bridge if it happens.
I’m so, so grateful to Turbo Tax! I NEVER deal with our taxes, that’s always been Lee’s domain, but they were very helpful and were able to help even a total neophyte like me.
In other news, Lee feels a little better today, and is able to eat a little bit more. He had a half a peanut butter and banana sandwich this morning and didn’t feel too terrible afterwards. Slow progress.
And the surgeon called yesterday. That tumor was growing fast. It was Stage II so up to 7 cm! It had started to invade the fatty tissue surrounding the kidney but the edges were very clean and he's sure they got it all. No other treatment will be needed except CT scans every 6 months for awhile. That was very, very good news. I did think about my friends that have been in similar situations with husbands diagnosed with some terrible disease, and their outcomes were not good. I found myself not thinking about it very much. At one point while we were waiting for December 18th to roll around Lee wanted to talk about what I should do with the house if something happened to him, but I didn't really want to think about it. It wasn't that I was thinking positive thoughts, I didn't want to think at all. I was basically just putting one foot in front of the other and going from one moment to the next.