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.

------------------------------------------

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.

I'm alive

I'm alive. I'm working. I'm moving along. Sometimes I forget I have cancer and then a day like yesterday happens when I have to take two, three hour naps and I remember.

Life, ya know. It's weird sometimes.

I start 300mg tomorrow and I am not looking forward to it. It took over a week and a half to get approval from insurance and everyone to sign forms and for the online pharmacy to send it. I'm switching from 400mg tablets to 100mg tablets and it basically took an act of God.

Have a great weekend.

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.