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.

Tuesday

It's me!

Blogger on iPad ain't easy. Anyway, just a quick update to say that I'm doing well. I had a swallow test/X-rays this morning and everything looks great. My new connections aren't leaking and didn't shrink while healing. I'm on a clear liquid diet today and will hopefully be home by Sunday for my birthday.

Moving right along...Dr. Mann declared me a superstar today. Duh. This bullcrap isn't going to ruin my birthday. Milkshakes for everyone!!!

little update

Just a quick update to let you know that Jenny was able to move out of the ICU over the weekend. She was so stable that they removed several monitors and lines Friday morning, then Saturday she was able to do some walking (just incredible to me!) and was moved to a regular floor.

So that's where things currently stand--holding steady and progressing in all the right ways. We hope that she will continue to be free of complications or infection and, as a result, her hospital stay can be quite a bit shorter than anticipated post-surgery.

surgery update

It was a difficult surgery--over seven hours--but the tumor is out.

They also had to remove her entire stomach, spleen, a small portion of the liver, and approx. 60% of her pancreas. The surgeon said her body won't even notice the spleen and piece of the liver being gone. The pancreas is a bit trickier as it is the one most likely to cause any post-op problems/infections. As for the stomach--did you know you can live just fine without it? I don't know all the technicalities, but essentially part of your small intestine becomes your "new," smaller stomach. This adjustment will probably entail the longest part of her surgery recovery, as her body has to get accustomed to the new set-up.

She is in the ICU for a few days, and then will remain in the hospital for a few weeks after that. Though it will be a tough road, we have every reason to believe she will make a complete recovery from the surgery. She is already exceeding expectations by being taken off the ventilator before the end of the first day.

So what about the cancer? The tumor was very large. It was also filled with over two liters (!) of blood. There was simply no possible way for them to maneuver around it and remove it without some bleeding into the abdomen. Obviously that creates some concern in terms of the long term prognosis. Still, we won't know anything until they get labwork back and know more about the tumor itself. It is fairly certain that she will go back on the Gleevac/imatinib--probably for several years--in order to guard against any relapse.

It's a lot to process, I know. However, I have to say that today we are feeling simply relieved that the surgery is over, that the tumor is out, and that there is no remaining sign of disease in her body. There are still some unknowns, yes, but Jenny is strong. It will be okay.

We will keep praying for strength and peace, and with gratitude for all of your love and support. We just can't say thank you enough.

the latest

Hey all, this is Jenny's sister, Leigh, posting today. Some of you have heard the latest, but for those who have not, let me give a quick update.

The CT Jenny had right after her last post did show that the tumor had bled again, but was not actively bleeding at that point. Still, she continued feeling so poorly that they ended up doing another CT last Wednesday (5/7). While at the clinic for that scan, she was feeling so much pain and nausea--and bloodwork showed her hematocrit had dropped from 30 to 25 in less than 24 hours--that they decided to admit her to the hospital immediately, where she stayed until Monday morning.

So, where are we now?

The scan showed that the tumor has, in fact, been hemorrhaging again, and they believe it is now larger than when she was originally diagnosed (approximately 21 cm now). Clearly the drugs are not working, and they cannot let this cycle of bleeding continue on like it has. And so they have scheduled her for surgery this Thursday.

We are feeling positive about this course of action. It must come out. She is otherwise perfectly healthy and should be able to sustain the surgery well. And her surgeon is one of the best--whenever someone at the hospital would find out who her surgeon is, the automatic response was always a quick nod of the head and, "That's who I would want if I were in your place."

That said, of course we are praying like crazy! We are praying for the surgeons, that they will be able to remove the tumor in one piece, and that it will not be connected to or require the removal of any other organs. We are praying for peace and comfort and strength. We hope that you will pray with us, too.

I know she is so appreciative--our whole family is--of all of the prayers and positive thoughts and well wishes that have been pouring in since the beginning. I keep telling her she has the most amazing friends, and she really does. 

We will do our best to post an update on Thursday as soon as we are able.

not ideal

Since my last post:

- started 300mg
- spent the week miserable
- assumed it was the medicine
- scheduled an appointment
- hypothesized with Stephanie that I was bleeding again
- hematocrit dropped 9
- CT scheduled for tomorrow

It's not ideal. They've scheduled the CT just to make sure it was in fact a bleed and how much it was. The hematocrit is not so low that they want to do a transfusion, but it does explain why yesterday I got fully ready for work, laid on my bed, and didn't move again for almost three hours. I fell asleep hard. My naps have been epic over the last week - five hours each day this weekend.

Let's not panic, but let's do start praying again that there will be no more bleeding.

Last week was the worst.