Bad news and good news and bad news and good

I have had SUCH an emotional week. I didn't post about it, but on Thursday we went to the nephrologist and just got some really bad news. I mentioned that on the MRI the tumor did not look malignant, but what I didn't know was that the MRI also found a large number of small cysts that hadn't been seen on the other scans. She feels that I have polycystic kidney disease, but she said she wasn't going to diagnose me 'officially' because once that term is written in my chart, I will be uninsurable. Given my already precarious insurance situation, I am grateful for this. She wants to do another scan in February and re-evaluate at that time.

I actually did write a lengthy post about how I was feeling about this devastating (possible) diagnosis, but I deleted it and gave myself a few days to get a handle on my emotions. It's a really bad disease. Very VERY bad. Incurable except for a transplant bad. And the statistics say that IF I have it, I've likely passed it on to 50% of my children. So 1.5 kids. It's bad. But it's not 100% definite at this point, so I'm not going to waste any (more) time grieving over it until it is.

So, to the good news. Today I went to the urology oncologist at UT Southwestern, the guy I had been waiting 3 weeks to see. He is an expert on kidney cancers, and performs nephrectomies all the time, so I hear. He was not impressed at all with my tumor. He said that it did not look cancerous, and that he would not recommend having surgery at this time. He wants to re-evaluate it in March and see if things have changed.

So, YAY! Thank God. It amazes me that two different doctors looked at the same scan and came up with such drastically different recommendations. My first urologist actually told me that she wouldn't wait more than a month before removing it, and this guy today said it would be a mistake to take it out at all right now. He said if it is cancer, that there's really no risk in waiting a few months because it is so small and very slow-growing. The bigger risk would be to remove my kidney and reduce my kidney function significantly when I have so many other problems to contend with. So the lesson is, kids, always get a second opinion.

Also, a lot of people have been asking how I'm feeling. I feel like a wrung out dish towel emotionally, but physically I have been doing okay. I have mild to moderate pain in my kidneys almost every day, but it is easily controlled with Tylenol. This may be due to a kidney stone in my left kidney, which could pass soon or not at all, or it may be related to the cysts, which means I'd better get used to it. My last blood tests showed an improvement in kidney function, and I took some more tests on Friday but haven't gotten the results yet.

There's just a little bit more bad news that came today just a few hours after the doctor appointment. I haven't written much about it on the blog because it is quite personal (like this isn't), but my husband was laid off from his job last April. He has been doing contract work and he is great at it, and God has provided marvelously for all of our needs, but really we need a (steady) full time job with decent health insurance, especially in light of the last few months. There was a job in this area that we thought would work out perfectly, and today we found out that it is just not going to happen any time soon. We close on our house in 3 weeks, and it looks like we are going to spend some time at my parents' lake house in Georgia to regroup and wait to see what happens next. It's an adventure...she said half-heartedly.

Now to the final good news of the day to bring our roller coaster to an end: My parents are coming here for Christmas!! They just told me tonight, and I actually cried when I got off the phone because I am just so happy about it and so completely emotionally exhausted from this crazy crazy day. There are just some times in your life when you need to see your Mama and Daddy, and this is definitely one of them.

Plus the door handles on BOTH sides of my van broke off this week and I'm hoping my dad can fix them for me. BOTH door handles. The second one broke off in my hand yesterday and all I could do was laugh. So typical of the way this year has been going.

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.

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.

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.