Thursday, June 11, 2009

Well...

Once we were at the oncologist's office, we found out that Cedars-Sinai had not gotten pathology results back to our doctor. So, we spent some time while the office manager tried to track down those results. So frustrating for us and for our doctor, too.

Finally, the results were faxed over, and they too seemed to be somewhat preliminary results as Cedars-Sinai said they are going to do some more "stains" with the specimen they have. But, for now, all the pathology results seem to be pointing to renal cell carcinoma, or RCC.

So, then Dr. M. starts talking about treatment options. He says surgery is debatable. There's immuno-therapy with Interluken, or there are some other treatments. All of that wasn't new to me. I have read a lot about kidney cancer and the treatment options in the last couple of weeks. I'm no expert, but I have a working knowledge of the various treatment options, and which programs in our area are well-know and respected.

At that point, I spoke up and asked for a referral to UCLA because I told him we knew enough to know that this is a "bad ass cancer" and Michael needs the best care available. After we left the doctor's office, Michael said he thinks I hurt the doctor's feelings, but I told him I don't care. If I have to bruise a few egos to get Michael to the best doctors for this disease, I will. Anyway, I also told Dr. M. that Dr. Joey had looked into things for us, and that he'd recommended UCLA, as well as City of Hope. Dr. M. agreed that Dr. F. at City of Hope is "the guru" for kidney cancer. But, until we have PPO insurance City of Hope is not an option.

After we left the office, we called the UCLA medical group to request permission to join. They told us we could only do that during open enrollment which isn't until late summer, and doesn't become effective until October 1st. But, Michael said that he had heard otherwise from a customer service rep at Blue Cross the other day. So, when we got home we got on the phone with her and she said all we need to do is find a primary care physician in that medical group who will agree to take Michael with the preexisting condition, and she could facilitate the rest.

Okay...

So, our first thought was that we were going to have to start calling every primary care physician in the directory. Fun times. And it probably would have been fruitless. Then genius struck! Michael called his boss. His boss' attorney's son is a big whig in the urology/oncology department at UCLA, and he surely will know a primary care physician whom he can persuade to take on Michael. So, Michael's boss is currently contacting Dr. R. to see what he can do.

I have a good feeling about this. Please pray that Dr. R. will know of one or more primary care doctors in the UCLA medical group who will be open to taking Michael as a new patient. Once we have that figured out, everything regarding the insurance should fall into place and we'll be set.

In the meantime, we do have a referral to see someone at UCLA about the Interluken 2 treatment option. It may take several days for that referral to be processed. I don't think we're going to make anymore headway until next week. Michael's boss said he'd do everything he could so that we could get in a see someone at UCLA next week. I'll tell you, he's been a huge help in this so far. He really seems to care about Michael, and I'm impressed that he's working the phones on his behalf.

Michael is struggling to keep his weight up. He is about five pounds lighter than I'd like him to be right now. He's also very tired most of the time. Please pray that he will gain some weight. I want him to be strong.

I'll post more as soon as I know anything new.

Thank you once again for all your words of encouragement, your prayers, your love. We are simply overwhelmed (in the best way) by all the goodness coming our way.

12 comments:

Shannon said...

Oh, Joannah. I kept checking in for a post. It does seem that you are being very proactive and that things are going to fall into place for the best care around for Michael. So ridiculous that you need to worry about insurance and chasing down lab results when you and Michael need to focus on health. Love and prayers for strength and beating whatever issue this turns out to be.

Number 6 and no more counting! said...

xo my friend.

Lea

AprilMay said...

I agree with what Shannon said! All that running around! Urg. But can I just give you a shout out for sticking to your guns to get Michael the best possible care? AWESOME!! Don't mess with teachers, LOL! I am praying and praying! Today I was praying for you while weeding for some reason, LOL. The roses made me think of you. I don't know why. ;)

Kayce said...

You guys have so many people in your cheering squad!! We are continuing to keep you, Michael and the medical teams you are meeting in our prayers. Hugs to you both.

~K said...

Hugs and prayers... your both in my thoughts... always.

Alex and Jill said...

Dealing with insurance is such a pain...it's horrible that you have to deal with that on top of everything else.

Know that I'm praying.

((hugs))

Shelley said...

Stay strong, my dear Joannah. I'm thinking good thoughts for you both. Sounds like you're on a good track with UCLA.

lots of x's and o's,

Shell

Lisa and Tate said...

I have been in China and just got to reading my blogs... Sorry I am so late on sending the love and prayers....

It sounds like you are doing everything possible to get Michael the best care and treatments.

You guys are in my prayer.

Sandra said...

I am proud of you for standing up for your husband. He needs you now more than ever...

Sending good thoughts your way. And hugs, too...

mekate said...

Milkshakes, protein shakes, peanut butter, snickers bars, things with big calories and love to you Joannah-- sounds like you are making huge progress where you can, and I am so impressed with your research, self-orientation, and sheer rightful gumption to get what you need-- You both are in my thoughts,

Kate

Kudo said...

Joannah

My heart is breaking for you and Michael. I agree with you you need the best doctor you can find for this. Don't worry about stepping on ego's in the way. You both are in my prayers daily and I hope that God gives you the comfort you both need to help you through.

OziMum said...

Oh Joannah. Its been quite a while since I've had time to drop by (sorry!).

Please know my prayers are with you and Michael - such a tough time. I love the song you have playing.