CT scan results

The results are in. . .

The green line is measuring the tumor. You can see my stomach at the top right just below my heart.

So the news is this - the mass is much smaller. Here are the measurements:

2/10 - 15.3x12.3x19.3 cm

3/24 - 14.6x10.5x7.6 cm

Basically a lot of the hematoma has reabsorbed and now we have the tumor leftover. The oncologist feels like we are moving in the right direction and is pleased with the results. In actuality I haven't really been on the chemo medicine for very long so they weren't expecting drastic reduction in this short amount of time. I will have another scan in two months. 

The doctor gave me permission to resume normal life without a chaperone. She sees a thickening of the tumor wall and feels like I'm out of danger for rupture. She did say today, "we're not within one cell of rupture anymore". Uh, ok. I knew it was a scary situation, but ONE CELL. Six weeks ago those doctors were freaked out and did a good job of scaring us too.

A massive THANK YOU! to everyone for visiting and caretaking and praying and every other possible thing. I can't thank you enough. 

FREEDOM is mine. I'm going to go drive my car now. 

currently

Another week down.

At my appointment on Tuesday, my neutrophils had rebounded and back on the medicine I went. I'm taking a half dose (200mg) and so far so good. I am feeling a LOT better, but I also don't think the drug is fully back in my system yet. Another week will give me a better idea of how I'll feel long term.

Shelly left on Wednesday morning and Kim is in town now. We'll be visiting the cherry blossoms this afternoon after work. The weather is really showing off with blue skies today.

These are the blossoms last Saturday when Shelly was here. They are in full bloom now.

My six week scan is on Monday. The BIG day. I won't get results until Tuesday, but I have high hopes that a lot of the blood has reabsorbed and the tumor/hematoma is much smaller. I'm also hoping for a thicker edge so that I am at a lower risk for rupture and can kind of get back to a more normal life and schedule.

Have a great weekend! Spring is here!

no change

Still no neutrophils, still no chemo meds.

I get a drug free weekend which is kind of awesome for my mental state, but obviously not awesome for the tumor.

Oh well, we do what we have to do. Have a great weekend!

small change of plans

Well, my body does not like 400mg of Gleevec. I had my weekly appointment today and my hematocrit had climbed up two points to 33, but my neutrophils came back at a big, fat zero. That meant nothing to me, but it was explained that neutrophils are the first line of defense when it comes to fighting infection in the body. And I have zero.

We are stopping Gleevec for three days and I will go back for blood work and a consult with the pharmacist on Friday. I will probably go down to a 200mg dose at that point. The idea of 200mg makes me very happy actually. Ever since I started the 400mg, I have been feeling really puny. She talked about upping my dose last week to 600mg and it made me want to vomit.

That's where we're at. She felt my abdomen today and doesn't feel significant shrinkage, but I can tell that it's getting smaller just because I'm able to eat a little more each day without feeling full immediately. Holly is here and making me lots of delicious, high in protein foods and filling my freezer with good things. We're also watching a lot of Veronica Mars.

the view from the clinic

I'll be staying confined to home the next few days to stay away from germs and praying for no fever. Fever would be bad. Fever would mean a trip to the stupid emergency room and I have no desire to return there. So no germs, no fever, lots of neutrophils - that's what we are praying for this week.

this week

Ginger has come and gone and now Nancy is in town. We picked her up last night and today she's off running errands for me while I sit uncomfortably at work. Did you know work is kind of the safest place for me to be? I'm at the hospital so if something happened (rupture) I'd be right here for quick response. Even though sitting at my desk is uncomfortable and exhausting, I have to stay up on my work and not get fired, ya know? (They'll never fire me.)

I got my mail order chemo medicine on Saturday and in the end only missed out on 600mg. I survived. At my appointment on Tuesday, my hematocrit had dropped five points to 31 (36-45 is normal). The doctor thinks it is from a combination of things, but mostly because I'm finally at the peak dose of medication. It can cause low blood counts. She offered a transfusion, but we decided to give it a week and see if it continued to sink or if it will level out. It will tell us if it is the medicine or if I'm bleeding again. For me, it mostly means a higher heart rate and being slightly more tired.

I did figure out that I was nauseated all last week and I just didn't realize it. In my head, nauseated was the feeling just before you throw up when your mouth gets that weird taste. Not so. If you can't bring yourself to put a spoon of food in your mouth - nauseated. Now that I know this, I've been taking the Zofran and Compazine and feeling a TON better.

This is so boring, but I thought you might want an update.

My typical day:

8:30am - wake up
9:30am - take chemo drug
10:00am - work
2:00pm-3:00pm - home, nap, etc
evening - lie on the couch with visitors stopping in

Really not that different, but I get to work less ;) I even made pancakes on Tuesday for Pancake (Fat) Tuesday and had three friends over.

I also cried myself to sleep on Friday. Things aren't all sunshine and happiness 'round these parts.

no news

I suppose no news is good news. This week has been kind of rough, despite having good numbers from my blood draw on Tuesday. Most days I couldn't get out of bed because of pain or lack of energy. I can't eat much without feeling awful and the arrival of my chemo meds (via mail order, an insurance requirement) is delayed again. They were supposed to be here yesterday, but now they are saying tomorrow. That means I will miss a day and no one is happy about that. My doctor wanted me to come get a single dose that would cost me $287 because insurance won't pay for me to get it from a local pharmacy. It's all kind of unbelievable. Let that sink in - $287/dose.

Mom left this morning and Ginger arrives next. I can't be left alone which is tough for a girl who likes to be on my own. Stephanie bought walkie-talkies for the house so she can check on me without hovering. I did wake in the middle of the night to my mother standing over the top of me a few times. Not. scary. at. all.

Lots of drugs are happening right now - anti-nausea, pain, chemo, anxiety. 

This crap is really messing up my life. I had plans for things and plans for nothings and now I can't be alone. Or drive. Or eat.

I look amazing though. I've dropped 20 pounds. Thanks, cancer.

here we go

Well, this feels terribly dramatic and annoying. My sisters had me convinced I should start a CaringBridge website, but after signing up and it asking me to tell "My Story" and people being able to leave "tributes," I knew that just wasn't for me. No way. Anyway, I can barely keep up with all the calls, texts, and emails coming my way so I thought this would be the easiest way for you to have all the information you could want and it be straight from my mouth and not secondhand.

Too much information:
After a month of upper abdominal pain, dangerously low anemia, blood transfusions, and an ER visit, I was referred to a GI doctor who performed an upper endoscopy on Wednesday, January 29th. They found a few abnormalities that were biopsied and sent off for further analysis, but seemingly nothing that explained my symptoms. A week and a half later, though, on Friday, February 7th, I received the results from my GI doctor that they found a 1cm GIST (Gastrointestinal Stromal Tumor) in the stomach wall. At that point the biopsy was inconclusive on whether the tumor was benign or malignant, so they scheduled a CT scan for Wednesday of the following week. 

However, two days later (Sunday, 2/9) I spent the night in a lot of pain and passed out in my bed at 4:30am. The pain subsided after that and I was able to get a little bit of rest, so I waited until the next morning to call my GI doctor (Monday, 2/10). He had me come in that afternoon and then sent me immediately to the ER for a CT scan--two days earlier than my original appointment. Upon arriving at the ER, blood work was done and my hematocrit, or red blood cell count, had dropped to 20 (normal is 36-45), and the results of the CT scan showed a rather large hemorrhagic tumor in my abdomen, which had originated in the wall of my stomach. That small portion in the stomach wall was what had been found via the endoscopy, and my anemia was a result of the tumor hemorrhaging into itself. It contained 1.5 liters of blood at the time of the CT, so it's hard to tell how much is tumor and how much is blood. The mass overall is over 6 inches wide, crowding all of my abdominal organs (stomach, pancreas, etc.). Due to my declining hematocrit, I was given a transfusion (2 units of blood) and admitted to the Surgical ICU that night.

The tumor is on the right side of the image (liver on the left) shaped sort of like a heart. Let's just say I am more comfortable lying down.

The next day, Tuesday, February 11th, I met with surgeons and oncologists who laid out two options of treatment. Option 1 was immediate surgery. However, the tumor is large and unstable (imagine something similar to a water balloon) and having immediate surgery could cause the tumor to rupture, which would lead to the cancer metastasizing in my abdomen and a poor long term prognosis. 

Option 2 was to start immediately on a daily chemo pill called Gleevec, which has a history of success with this specific type of tumor, in hopes of shrinking and "scarring down" the tumor to make surgery and removal less risky and invasive. This plan is not without risk though, as one of the side effects of Gleevec is bleeding, which the tumor is already prone to do, and because the tumor is still unstable and could rupture on its own. 

After a few days of thoughtful consideration and conversations with the doctors, we all thought it was best to move forward with Option 2. I began treatment with Gleevec on Thursday, February 13th. 

I'll be meeting weekly with an oncologist for blood work to check my hematocrit to ensure no bleeding is occurring. In six weeks I will have another CT scan to determine whether the Gleevec is working, meaning the tumor is shrinking and the walls are scarring. If the tumor is responding, we will continue with the drug for as long as possible, though it's likely I will have surgery within the next six to nine months. If the tumor has not responded, or is progressing, surgery will be the only option.

If all goes as planned, the long-term prognosis is good. For the next six weeks it will be a risky situation and we ask for your prayers that the tumor will not rupture or continue to bleed and that my body will respond favorably to the Gleevec.

I can't tell you what all your love and support has meant to me over the last week. It has been quite literally overwhelming. Thank you for praying, fasting, and for calling, texting, emailing despite not always getting a response.