Friday, November 27, 2009

Happy Day After Thanksgiving!

I have a little MRI update of sorts. I went early Wednesday morning and had my innards scanned once again. It was a little creepy, but thankfully I didn't freak out or anything. I mainly kept my eyes closed and pretended I was on the beach. Anyway, the nephrologist called later that day and said that the report from the MRI indicated that the tumor in my kidney did not look malignant. THAT is big news. I know that is big news. She felt that we should wait on the surgery and look at it again in a few months to see if it has changed.


We are trying not to get too excited about it until we see the surgeon on Thursday. His opinion is the one that counts. I know that sounds strange, but if I get it in my head that I'm not having the surgery, and then I walk in there and he recommends the surgery, I will seriously have some sort of emotional breakdown of ugly crying right there in his office. So right now I just think that it is really good that the tumor looked better on the MRI than it did on the CT scan, and I'm feeling hopeful that maybe just maybe things will turn out fine.

But still, maybe not. And even so, there are still plenty of other unknown long-term issues with both kidneys that we will continue to deal with.

So, to sum up: encouraging report, kidneys still in peril. Will know more on Thursday.

Tuesday, November 24, 2009

Today was bananas. Too bananas to even spell it out.

First of all let me start off by saying that I have been instructed to significantly cut back on my potassium intake, and the lack of chocolate and tomato in my life is causing me great duress. I will try to carry on with this post anyway.

Secondly, we have a contract on our house. They want to close December 28. So far they seem very sane.

Thirdly, I went to the doctor today to discuss the surgery. The good news is that all of my lab results came back almost normal, which for me is good, and the nephrologist has given me the okay to go ahead with surgery. The bad news is that sucker is going to be a BEAST. The incision will be from front to back, all the way around my right side. Allllll the way around. All. The Way. Around. I think they use a giant can-opener. And also one little minor detail, they're going to take out my rib. I'm having a RIB REMOVAL. IT'S BANANAS! And I can't even eat bananas!

Fourthly, my eye exam was fantastic. No cysts on the retinas, no vision problems. I was just so happy to finally get good news from a doctor. Now I am praying for a clear brain MRI, well, not clear, I mean, I want a brain to be in there, but a brain with no cysts. As long as the MRI looks good, one of the major deadly kidney diseases will be likely ruled out. And then we will just have the tumor and possibly another major kidney disease to contend with.

I can hear your questions now: Chrissy, when are you going to have the surgery? Which doctor are you going with? Where are you going to live when you sell your house? What will they do with your rib when they are done?

The answer to all of them is the same: I do not know.

I go for the MRI early Wednesday, and then next week I meet with two different surgeons, one of whom does this type of surgery laparoscopically on occasion for qualifying candidates, so I'm really looking forward to what he has to say. Hopefully he will say I can keep all my ribs.

Meanwhile, happy Thanksgiving to y'all! We're leaving tomorrow for Houston to see my sister and her family as well as some aunts and cousins that I haven't seen in quite a while. And I'm going to smell the potatoes but not eat them.

Thursday, November 19, 2009

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.

Monday, November 16, 2009

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.
Happy 9th!
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.

Thursday, November 12, 2009

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.

Tuesday, November 10, 2009

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.

Saturday, November 7, 2009

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.

Monday, November 2, 2009

The Many Costumes of This Week

Halloween night

Church Festival

Storybook character day at school

The kiddos

The kiddos

Kidney Peril Updates
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Contact Info

chrissyinthecarpoollane at g mail dot com.