Friday, October 15, 2010

PET Scan Postponed

The insurance company has still not approved the PET scan. They haven't denied it. They just haven't approved it. So, it looks like I'm done with testing until next Tuesday. I'm looking forward to seeing my kids tonight. I have never been away from Ryan. I miss them all!

Thursday, October 14, 2010

Today's Testing Fun

This morning I went in for an echocardiogram. No big deal at all.

Then it was time for the dreaded bilateral bone marrow biopsy. Thankfully, I had scheduled it with sedation. The lady who set up my IV, Patti, was so amazing. She told me the coolest story of lots of good people who supported a man diagnosed with Leukemia. I love meeting these people and hearing their stories. It's a little overwhelming though at times to think that every person on the MD Anderson campus (which is huge) has a story. Maybe they have cancer. Maybe they're a cancer survivor. Maybe they are working there. Maybe they have lost someone to cancer. But they all have a story. If you want to meet courageous people, this seems to be the place. If you want to meet, caring people, this seems to be the place.

I'd love to hear more of their stories. But, I've digressed.

Patti set up my IV and assured me that they were going to give me the "good stuff." She promised I wouldn't feel anything and I wouldn't remember anything. WHEWHOO!

Patti was right. I didn't feel the test, but now that I'm sitting on a very firm mattress, I am feeling far too much! Ouch.

I'm not sure how I'm going to sleep tonight. Both back sides are bruised and hurting and I have a catheter hanging off my chest. (It's in my medi-port so that I won't have to get stuck again tomorrow for the PET scan.) Hopefully, I'll be able to get a little sleep.


Today is a bilateral bone marrow biopsy. Yuck. Not just one. Two. Both sides. This is not going to be fun.

Wednesday, October 13, 2010

Today was a day off from testing and all cancer related things.

Michelle and I went to the Houston Temple, which is beautiful, of course. If you're not familiar with the Temple, you can click here and watch a short video that tells why Mormons build temples. Unfortunately, the video doesn't share the best part of the Temple with you. The best part is just the peace one feels when they attend the Temple. They are the most beautiful places and very quiet. I feel closer to God there than any other place on earth. If you haven't been to a LDS temple before and you're ever in an area where they are doing an "open house" at the Temple, please go. I think you'll enjoy it.

Michelle and I are staying at her sister-in-law's house. Isn't that nice? She doesn't even know me and yet she offered to let us stay there. The best part of the story though is really about Michelle's husband, Suresh. He voluntarily took the week off work so that he could be with their kids ... so that Michelle could be with me. Isn't that amazing?

I really am very blessed.

Tuesday, October 12, 2010

More Tests

I had more tests today. Yesterday they took 12 vials of blood, did an EKG and a chest x ray. Today they did a Mammogram, a CT scan with contrast. Contrast everywhere. Not pleasant. 2 big bottles of barium. Berry flavored barium. But, that wasn't the worst part of the barium. They also did a barium enema. And, the funny little man who had the privilege of doing it, kept snapping his gloves as I was lying down on the scanners bed. Nice. Since he was snapping his gloves, I gave him a hard time about what he must have done to get stuck with that job. I'm sure not all patients are as pleasant as me. haha.

Jana left today to go home. It was so nice of her to drive me down here and to stay with me. She is a neat lady and I really felt privileged to spend so much time with her. Hopefully, you have (at least) one of those friends who just by their example reminds you of all the good things in life, all the really worthwhile things in life. I'm lucky that I have several of those friends. I really am very blessed to have so many amazing people in my life.

Another one of my kind, amazing friends came down from San Antonio to be with me. Michelle went with me for the CT scan. I volunteered to let her go in for the barium enema. I can't believe she didn't take me up on the offer. ;)

Oh, and regarding the mammogram. One word: pancake.

Monday, October 11, 2010

MD Anderson

On Sunday, my friend Jana and I came to Houston. This morning I had an appointment with a Lymphoma Specialist at MD Anderson. If you're not familiar with MD Anderson, I'll just summarize it by telling you they are ranked #1 in treating cancer. The have an amazing reputation, and I can tell you that it is well deserved.

Today I first met with a lady for registration. Then a volunteer came over to explain just what would happen. He was really knowledgeable and kind. I then reviewed my history with a nurse. She found it unbelievable that I had not had a PET scan or at least a follow up CT scan. She was really pretty and she reminded me of one of the young women that was in my class when I lived in Plano, Texas.

When the nurse left the room, she told me that the research assistant would come and then I could wait in the waiting room for the Dr to be ready. However, about 1 minute later, the doctor came in. He had reviewed all my records and made notes on them. (Isn't that amazing?)

He was also surprised that I had not had a PET scan or a follow up CT scan. He was able to feel the lump on my neck and also saw a couple of other spots on my back that may be new "lesions." He said he would agree with the diagnosis of marginal lymphoma and would originally have put it at stage 4.

He ordered all new scans and some new tests as well. We discussed the "what if's." If it's not the Lymphoma that is causing the symptoms, it could be autoimmune related. If it is the Lymphoma, it could be in "partial remission", meaning that it is essentially just waking up, or it could be active. It could also be another type of cancer.

To determine what's going on, he's ordered a bunch of tests. Blood work, EKG, Echocardiogram, Chest Xrays, CT scans, mammogram, neck biopsy, bone marrow biopsy, and PET Scan. He'd also like a dermatology, hepatalogy, and gastroenterology consult.

We discussed briefly that he will tolerate 1, maybe 2 relapses before he refers me for a stem cell transplant. Also, they have a clinical trial that is opening in November that is specifically for recurring marginal lymphoma.

Obviously, it doesn't make sense to spend a lot of time dealing with the what if's. It's much better to just get the information we need. So, let the testing begin!

Sunday, October 10, 2010

It's In The Valleys I Grow

My Dad shared this poem with me. I think it's beautiful!

Sometimes life seems hard to bear,
Full of sorrow, trouble and woe
It's then I have to remember
That it's in the valleys I grow.

If I always stayed on the mountain top
And never experienced pain,
I would never appreciate God's love
And would be living in vain.

I have so much to learn
And my growth is very slow,
Sometimes I need the mountain tops,
But it's in the valleys I grow.

I do not always understand
Why things happen as they do,
But I am very sure of one thing,
My Lord will see me through.

My little valleys are nothing
When I picture Christ on the cross
He went through the valley of death;
His victory was Satan's loss.

Forgive me Lord, for complaining
When I'm feeling so very low.
Just give me a gentle reminder
That it's in the valleys I grow.

Continue to strengthen me, Lord
And use my life each day
To share your love with others
And help them find their way.

Thank you for valleys, Lord
For this one thing I know
The mountain tops are glorious
But it's in the valleys I grow!