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.