what's next

Today I had my oncology follow-up appointment after a CT scan yesterday. Although we got pathology back in the hospital, we didn't have any real answers about the future. It still feels a little like that, because who knows what could happen, but we are hoping and praying for the best over the next few years.

My tumor and long term prognosis is measured on four factors:
 - location
 - size
 - mitotic rate
 - rupture

Location - the stomach is where you want it. Much better than if it was in the small bowel.

Size - my final tumor measured at 21 cm, but it's unclear how much was tumor and what was blood. We won't really ever have that answer. But it was LARGE.  My CT scan from 5/7 can show you.

This is a top down view of my abdomen. Can you believe!? You can make out the liver (left), spleen (right), and kidneys (bottom). The rest is tumor.

Mitotic rate - low. It had been growing for years.

Rupture - there was bleeding during the surgery. They had to remove the blood so they could maneuver around the tumor. BUT the pathology showed good, negative margins and that the Gleevec had been working. Pathology said there was extensive treatment effect. As explained to me, that means a lot of the cells that leaked into the abdomen were dead and that is good news. There wasn't much "live" tumor leftover for the genetic exon testing to learn more about the tumor.

Taking in those factors, the statistics show that 84% are cancer free 2 years out and 71% of patients are still cancer free 5 years out.

So what's the plan? The plan is to heal a little more and then start back on Gleevec for a few years. I'll be taking a 200mg dose that the doctor feels will be effective without making me miserable. I'll still be fatigued and taking anti-nausea meds with it, but I feel good about 200. I was concerned it would be higher and my life would be harder if that were the case. I'll go for CT scans every three months for the first few years and then the time between will increase.

I'm just so glad that tumor is gone. You have no idea how miserable it was making me. Not that eating without a stomach is a picnic in the park, but it's just something I'll have to get used to.

Sending all my love to you for all the prayers, support and love you've given over the last few months.

at home

I suppose you still might be interested in what is going on. I've been home for a week and things are going as well as possible. I'm eating small amounts and also living off being tube fed around 1200 calories a day. The tube feeding will hopefully be a temporary situation (4-6 weeks).

My doctors want me to have as many calories as possible for healing. I'm on a soft food diet for 4-6 weeks and then can expand and experiment to see what works with my new system. My incision is healing and looking like a roller coaster across my abdomen. It's pretty huge, but I'm trying to limit my intake of pain medication. I have a surgical follow up tomorrow and an oncology appointment the following week. We got pathology back while I was still in the hospital and the mitotic rate of the tumor was very slow which is great news for the long term prognosis. He said the tumor had been growing for years and years. I will likely be on the Gleevec for a few years to prevent recurrence. My surgeon assured us it wasn't the medication making me feel so bad the last few months, it was the small watermelon sized tumor filled with blood that was making me miserable. Imagine that.

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The last part of the hospital stay was really rough for me. I was going a little nuts from being cooped up in a hospital for 15 of the 25 nights of May. I was nauseated and couldn't eat and my birthday was coming up, etc. It was not a good time. I ended up taking an anti-anxiety med the last two nights because I wanted to crawl out of my skin. My friends were the best as always and brought the party to me on my birthday. There were party hats, streamers, jello shots and a jello cake. The best. I cried as they left because I wanted so badly to be leaving with them.

I broke out the next day and came home to a mountain of packages and cards that were so generous and kind. My mom got here before surgery and just left to go home today. Holly also flew up for the last few days and now my sister, Shelly, is here for the week. I'm a lucky and very, very (I hate this word) blessed girl. Things couldn't have gone better unless I was actually able to have kept my organs. I will also share that I came home from the hospital 10 pounds lighter than when I went in. That's a heavy tumor!

If you want more info or have specific questions, leave them in the comments and I'll try to answer them in my next post.  It's been a pretty crazy month and I'm sure I've left a lot of information out.