Warning: Medical Jargon

I had a nephrologist appointment today, and I've really don't even know how to explain what happened, mainly because there's so much that I don't understand at this point. The main thing is that (I think) my kidneys are functioning well enough to go ahead and meet with a surgeon. This is a HUGE answer to prayer.

I had already made myself an appointment with a guy at UT Southwestern in Dallas who fit my list of correct credentials, but the funny thing is that my nephrologist called me right after I left her office and said that she was calling over to UT Southwestern to get me an appointment with a urology oncologist there, and I was like, "Oh, I'm one step ahead of you, baby." Okay, I didn't say that. I should have.

She also ordered an MRI and a long list of blood tests, and an opthamology referral to check for cysts on my retinas. ACK! Apparently this is a possibility? She also wants to check the MRI for brain cysts as well, because apparently this is a possibility too? Yikes.

There have been so many moments in the last two weeks where I thought that maybe this wasn't as big of a deal; it might not be cancer, it might be just this or just that. Today was not one of those moments. Specifically when the doctor told me that, yes, I do look like a candidate for one of these major kidney diseases, but that those diagnoses can wait until after I get this tumor issue solved. That's the important issue right now. So let's just put those potentially fatal life-altering diseases on the back burner, shall we?

The thing about this tumor is that it is possibly kidney cancer. I've read many different statistics, but the doctor today told me that it was a 50% chance. The thing about having possible kidney cancer is that it is still just a possibility, which means of course that there is the possibility that it is nothing, a 50/50 shot. However, it is not advisable to biopsy a kidney tumor because the needle will spread the possible cancer, and it really isn't a good idea to leave it in there in case it is cancerous, so tumors that look and act like cancer just have to be removed, period.

This leads us to the impending surgery. I don't know what to expect, but I suppose I will find out at my next apppointment. The internet tells me that a partial nephrectomy (removal of part of the kidney) is possible if the tumor is in just the right place, and I hope it is. A radical nephrectomy (full removal of the kidney) is actually an easier surgery technically and can be done laparoscopically with much less recovery time. The downside is, well, being down to only one kidney for the next 50 years, and I really don't want that.

I'm not totally certain about the hospital and recovery time for the partial nephrectomy; I've read in a few places that it is a pretty large incision and a 4-5 day hospital stay. (I also read a horrifying account of a radical nephrectomy that described the removal of ribs and a huge gigantic monstrous scar, but apparently that was written quite a few years ago and hopefully that was an unnecessary freak out on my part. Let's hope so.)

Meanwhile, I've been having lots of pain in both kidneys, but more so on the "non-tumor" side, which contains a 3 mm kidney stone that may or may not be 'exiting the premises', so that should make for a fun Thanksgiving.

So. To summarize, I don't know anything really, nothing has been ruled out, nothing is certain. I will go for an MRI and then I have an appointment the week after Thanksgiving with the surgeon. In the meantime, I made sure to get a prescription for some pain meds.

We plan to go to Houston next week to celebrate Thanksgiving with some extended family that we NEVER get to see, AND my sister is going to be there, and I am very excited about that. We contemplated canceling it; I'm hurting and cranky and money is tight, but we both agreed that we really need to see family and that it will be nice to get away for a few days.

Thanks again to all of you who have sent me encouragement; I love getting your comments and your e-mails and cards and I've even gotten a few packages. I appreciate all of the prayer and support. I am very blessed.

Birthday Girl

My baby turned nine last week, and her party was this weekend. We invited her Brownie troop over for a back yard campout, and a good time was had by all. I spent exactly zero time planning this party, which is a big difference from what I normally do, but they are such a sweet group of girls, they really just entertained themselves and had tons of fun.

I did take the time to make her cake, though, can you tell? What a work of art.

In health news, I would like you to disregard everything I wrote in the previous post. Things change quickly around here. I've had phone calls and e-mails from so many friends and relatives who know about doctors and health struggles, and I've gotten excellent advice. My husband's cousin is a surgical oncologist, and he spent about 45 minutes on the phone with me the other night, reviewing and explaining my CT scan results and answering each of the many questions that I had written out for him. He reassured me that since I live in a *large* metropolitan area, there is really no need to travel to Houston to get good care. He knew exactly what type of surgeon and specifically what training was needed, and even did an internet search and sent me the names of a few doctors in town who had the specific training he recommended. And guess what? One of the doctors is actually a partner in the practice where I am already a patient. Huge relief.

So that's how it's been around here this weekend, moments of panic and dread followed by reassurance that this too will be fine.

This week I will take Tommy for his tonsil recheck, Grace for her annual checkup, and then I will go for testing at the nephrologist on Thursday. It's all medical, all the time around here.

Feeling Better Thank You

I had the rug jerked out from under me on Tuesday, but today I think I'm finally getting back up and trying to come up with a plan. I called the urologist's office and got a long list of questions answered, and then I called random nephrologists and found one that could see me next week. That made me feel SO much better.

Everybody and my mama has been advising me to look around at surgeons and find "the best". I have no idea how everybody finds doctors that are the best, and googling things constantly is making me a little crazy right now. One thing that people have told me over and over again is to go to MD Anderson Cancer Center in Houston. I really like my current doctor, but I realize that I like her because she is personable and that I honestly have no idea what kind of surgical skillz she has.

So I looked around online for a good surgeon in Dallas, which got me nowhere, and then I called the doctor that I worked for last month at the Fair. He is an OB/GYN and a cosmetic surgeon. I explained the whole mess to him and asked him what doctor he would see if he was in my situation. He stated that without a doubt he would go to MD Anderson, simply because there are doctors in Dallas who do these types of surgeries here and there, mixed in with all of the other urology stuff that they do, and then there are the doctors at MD Anderson who do these surgeries constantly. That makes sense to me. So I am getting that ball rolling, but I have no idea how long that will take or what sort of logistical nightmare that will be set into motion.

In the meantime, I have received tons of support and encouragement from people who are praying for me and who love me. I am a very very blessed chica. Sometimes, though, I think when people hear I have had a cancer diagnosis, they assume that I am dying, and I'm not really sure how to respond to that yet. I know they mean well, and I don't want to be flippant and say "Oh, I'll be fine", because it is really scary and there are going to be some difficult things ahead for me, but I don't want people to think I've been given a death sentence either. Maybe I just feel awkward because this is still very new.

It may encourage you to know that I've already found plenty of things to laugh about. For instance, do you know what is a really good way to get what you want? Say you have cancer.
Take a conversation with my husband about where we want to eat, for example:

Me: I want Chic-Fil-A.
Greg: Meh, I don't know, we just had that last week.
Me: But I have cancer.

Works like a charm! Chic-Fil-A for everybody!

Actually it only worked about 3 times, and then he caught on. It was a good run, though.

My friend Kim made me laugh so hard today. I was telling her about my diagnosis and the surgery and THE SCAR! (Dear Lord, I'm afraid of the scar) and her immediate reaction was to tell me that it was such a wonderful thing that I had decided to wear a bikini for the past two summers, because those days are officially over now. I probably laughed for three straight minutes. That's a good friend.

Things have taken a turn.

I got some really bad news today from my doctor, and I've decided to write about it here, partly in a way to keep all of my info straight, and to work out my thoughts, but also because this is a good place to keep info for my family members and friends, since I tend to leave out pertinent information when I speak with them.

I met with my doctor today for my CT results. The CT scan that I had last week showed a suspicious mass on my right kidney that the doctor believes to be cancer. There's no way that we can know for sure that it is cancer until it is taken out and analyzed, but it looks and behaves that way, so we are treating it like it is.

My thoughts are a little scattered right now, and I am still a little stunned, so bear with me. This all started two months ago when I had a routine physical and my bloodwork came back funny. At the time, we thought it was a kidney infection, but a retest a month later showed the same thing. I began to have pain and other symptoms of a kidney infection, or so I thought, and was given antibiotics again. My regular doctor sent me for an ultrasound and referred me to a urologist, suggesting that perhaps I had kidney stones. Last week, the urologist looked at the ultrasound and told me that I had two cysts, one on each kidney, and that they were probably not cancer, but they weren't benign either. They were a rating of a 2 to 3 on the Bosniak scale, which Google told me was either an 18 or 33% chance of cancer. She told me the CT was to look for kidney stones, which could be a possible explanation of why someone so young would have that number of cysts in her kidneys.

Anyway, she sent me for the CT scan, and I came back for my appointment today to review the results. I saw the two cysts she had mentioned last week, which are apparently benign, as well as the tumor that appears to be cancer. She still classified it as a 3 on the Bosniak scale. (4 is the worst, sorry for the technical terms here.)

My understanding is that kidney cancer, when caught early, is not a terrible prognosis. Usually a section (or all) of the kidney is removed, and there is no chemo or radiation. However, there are a few potential complications in my case.

One is that the tumor is very small (1.5 cm), which seems like a good thing to me, but according to my doctor, it may be tricky for a surgeon to find it. I don't know how big of a deal that is.

Another potential complication is that the doctor is very perplexed about why I have the kidney cysts to begin with. She has been continually saying that it is very unusual for someone of my age with no prior family history and no other health problems or risk factors to have all of this going on. She wants me to get tested to rule out another major kidney disease and to test the function of my healthier kidney to make sure that it can support me since I will need to have some or all of the other one removed.

At this point I hope you'll forgive me for being technical, but my mom is going to be googling all of these things, so I need to go ahead and put it up here....The diseases I'm going to be tested for are Von Hippel-Lindau disease (this is a genetic disorder and seems very unlikely); polycystic kidney disease (also genetic and hopefully also unlikely); and medullary sponge kidney.

So. That is where the situation stands as of this evening. I've been referred to a nephrologist, whose first available appointment isn't until the end of November (gahhhh), and will likely get an MRI in between now and then.

Some of it doesn't make sense to me at this time, and hopefully I will get some clarification on things in the next few weeks, but I wanted to go ahead and write down what I know for now so I wouldn't forget.

I certainly hope that I will be able to look back on this blog post in a few months and remember it as "The Day We Got So Freaked Out About What Turned Out Fine". Until then, keep me in your prayers if you don't mind.

By the way, Tommy's tonsillectomy went well and the doctor told us he had an abscess behind his tonsils that had some scar tissue, which tells us it was a really good thing for us to go ahead with getting them out. That was a relief. He is tired and sore, but is recovering well and being such a good patient.

And just to show a little thankfulness, remember that contract that I was so upset about losing? If it had gone through, I would be in the middle of moving out this week. God had His hand in that situation, and I know this is no different.

Updates and Random Things

We've had a busy and chaotic week around here. No news on the real estate front, no law suits pending or anything like that, but medical drama abounds. Tommy is getting his tonsils out Monday morning, which everyone says is a routine surgery, but that's mah baybeeeee and someone is going to cut on him and I'm trying not to freak out about it. I'm sure he'll be fine, and perhaps I will not weep and wail and throw myself in the floor when he is wheeled off. Perhaps.

Meanwhile, my kidneys have decided not to behave themselves, and while I'm busy trying not to freak out about Tommy, I'm beginning to freak out a little bit about that. I've had an ultrasound and a CT scan this past week, and it seems that both kidneys have cysts in them that are definitely not benign, but also probably not malignant, but so far that's all I know. (!)

I'm assuming that surgery is in my near future for that because really that junk needs to come out, and because I feel like crap and this is unacceptable. I won't know for sure until later this week.

One bright spot: we've met our deductible for the year! Our FIVE THOUSAND DOLLAR DEDUCTIBLE! Woo hoo! "Free" medical care until....oh, wait, it's almost the end of the year. Dang.

Did you catch the part where we met our FIVE THOUSAND DOLLAR FAMILY DEDUCTIBLE? (It is always written in all caps.) That is just how much fun this year has been. Really, 2009, you've outdone yourself.

Here's to 2010. May it be boring and dull and drama free.

Okay, I don't really have anything else, so here is a random photo.

The Many Costumes of This Week

Halloween night



Church Festival


Storybook character day at school

And now I am ready to talk about what happened to our contract.

Maybe. I might still be too mad. We'll see. Some of you have already heard this, or parts of it, on angry e-mails or phone calls. Here's the whole thing.

Five years ago, we put a contract on our lovely house in Dallas and had it inspected. The inspector reported that there were cracks in the sheet rock and the brick exterior, and that we needed to get the foundation inspected. Our sellers produced a report from a foundation expert stating that the foundation was within acceptable limits, and that the home needed to be watered regularly.

Being not from Texas, we were perplexed at these instructions. We came to learn that this region has a very shifty soil type, and the soil contracts by several inches in times of drought, and expands just as much in times of rain, taking all the houses along for the ride and leaving them with cracks and frequently needing foundation repair. Therefore the house must be watered like a plant. Our realtor assured us that this was normal for this area, and we would be hard pressed to find any home in Dallas that did NOT have cracks in it. Over time, we have found this to be true of our friends' homes as well and have accepted this as a fact of life, as do all of the homeowners in this area. And we have watered the house faithfully.

When we put our house on the market, we noted in the seller disclosure that there were indeed cracks on the sheet rock and the brick exterior, but that the foundation was within acceptable limits and the cracks were normal for the age of the house and the soil type. When our lovely buyers came on the scene, they asked some questions about the foundation, and our realtor again relayed to them our disclosure about the cracks.

So we all signed the contract and awaited the inspection. The inspector (shockingly) found that the sheet rock and the bricks had cracks in them. He told our buyers that this house had MAJOR foundation problems (in all caps) and then proceeded to note every other little flaw of the house, as is his job. We received several angry e-mails from the buyers' realtor demanding to know why we hadn't disclosed this MAJOR issue (all caps) and what we were planning to do about it.

Well Greg and I were very upset to learn that we had a MAJOR issue, because that means major dollars to us. We reassured the buyers that we were looking into it, and had several companies come out to give estimates. Two of the companies told us that we had MINOR foundation shifting, that could be fixed for about $3,000, with a lifetime transferrable warranty. (While that is a lot of money, please bear in mind that we know people whose homes have required $10-20,000 in repairs. $3,000 is minor.) Meanwhile, the third company informed us that all of the cracks were cosmetic, and that there was no actual problem with the foundation itself, so no repairs were needed. Their estimate was zero dollars. Seriously.

However. While we were still getting estimates from the different companies, we received a termination of contract notice from our buyers, stating that we were liars and had intentionally deceived them about the foundation, and that we had broken the law by not disclosing this MAJOR issue.

Several days went by. Our realtor, in a peace-making effort, forwarded all of the reports to the buyers, plus a copy of the bill for some electrical work we had done after the inspection.

Finally, we heard back from our angry buyers. They would like to renew the contract, they said, for the previously agreed on (and very low) price, plus a few extra things, such as:

Fix the foundation (which we had already offered to do).
Plaster all cracks in the interior and exterior of the home.
Rehang all of the doors in the home so they would be perfectly perpendicular.
Dig out all of the flower beds and grass so that 4 inches of the foundation is visible all around the house.
Recaulk all of the exterior windows where the caulking has become separated.
Replace the driveway because it has cracks in it. (?)
Regrade the yard. (!)
Fix a loose faucet handle in the guest bathroom.
Replace cracked tiles in the walkway off the patio.
Install two extra fire alarms because there just aren't enough in the house.
Have the dishwasher repaired (It is not broken. I use it every day.)
Install a pan under the hot water heater.
Have the chimney cleaned.
And by the way throw in an extra $3,000 in closing costs.

There were actually more requests, but I can't remember them right now and it makes me too mad to look at the e-mail. I need to assert here that in our original contract our buyers were getting our house for at least $11,000 under its appraised value PLUS a $7,000 stimulus rebate from Uncle Sam. That is what is known in financial circles as A Good Deal.

We responded that they could have the original price and the foundation repair and a few extraneous things that we'd already done since the inspection. We didn't hear back from them, and we were not sorry to see them go.

Then this week, we got an e-mail from their realtor, stating that his clients continued to be "very angry" over our deception and lies, and that they were taking legal action against us because they had to spend $300 on an inspection to find out about a MAJOR foundation issue that we knew about all along and should have disclosed.

The issue we had offered to fix. And give them a lifetime warranty.

Which we now know isn't really even an issue.

Oh, and PS? WE DISCLOSED IT.

The end of the story (up to this point) is that I wrote out a description of our knowledge of the foundation from the very beginning, quoting directly from the report from our seller and describing our meticulous watering and monitoring of the cracks should they move (they have not) and quoting from all of our current reports, etc, etc. I hope this will make them see that they have no case, however these people don't strike me as being exceptionally rational.

Anyway, that is all I have. Please cheer me with your incredulous and incensed comments.