Tuesday, December 8, 2009

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.


  1. You sound so together and calm on the phone. *hugs* I am praying for miracles for you. You amaze and awe me with your patience and faith, but I know you have moments of panic and hurting too. I love you and I wish I could be there for you.

    And you know, historically, you usually move while pregnant, not with goofed up organs ;-)

  2. I am praying, too and so are lots of people that I know.

    One good thing about y'all going to Georgia is that I'll get to see you soon! Love you! (And you amaze me, too.)

  3. Oh man. The stress of it all. The ups and downs, and back and forth, and unsure. I can see why you are feeling all wrung out. I continue to add you to my daily prayers. Hang in there, Chrissy!

  4. I'm so glad your mommy and daddy are coming for Christmas!

    Wow, that is a lot. Uninsurable...it is a scary place to be, I hope you can avoid that. This is why the system is so broken...people who NEED it can't be diagnosed because then they can't HAVE it. Ridiculous.

  5. i'm sure it's absolutely no consolation to you but suddenly my crappy month doesn't look so bad.

    i'm keeping the prayers going... here's to dr. second opinion saying, in march "hey look, no growth, nothing new, nothing to worry about!"


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