A Poem

The poem below hangs in the hallway of my oncologist's office.  It is a nice poem.  I especially like the last line.  I can't remember if I wrote about this already (I probably did), but one night early on after my diagnosis when I was particularly upset, Adam said to me: "I just don't want to see this crush your spirit."  I have tried to take that to heart on the rough days.

Cancer is so limited...
It cannot cripple love.
It cannot shatter hope.
It cannot corrode faith.
It cannot eat away peace.
It cannot destroy confidence.
It cannot kill friendship.
It cannot shut out memories.
It cannot silence courage.
It cannot reduce eternal life.
It cannot quench the Spirit.

Although it is hard some days to remember how limited cancer is, when you think about it in the grand scheme of things, it really is.  I'm sure we could add many more things to this list....

Emotional Strength isn't Easy

As I have mentioned before, I am an emotional person; I cry easily.  I cried when Adam proposed, when I attempted to give my speech at my sister's wedding, when I said my vows at my own wedding.  I also cry at the weddings of close friends and family, sad movies or TV shows (most recently Downton Abby, which I am still mad about), and yes, sometimes even commercials.

At one of my earliest appointments with my oncologist, I cried.  Adam held my hand and my doctor told me that I could cry this time, but moving forward I will have to be strong to fight this.  I haven't cried in his office since.  That is until this past Monday.

We were discussing my increasing liver dysfunction and what that means for available treatment options and prolonged survival.  Adam asked the doctor about a liver transplant considering the disease is almost exclusively in my liver at this point.  The doctor told him that was a great question and he knows that Adam "would cut off his arm to save this woman."  That's when I cried.  I held it together through the not so great news, but that was the breaking point. 

I know Adam has been and will continue to do whatever he can to make me better.  There has never been a doubt about that.  He has made appointments with specialists, done research on clinical trials, researched nutrition and health plans, and scours message boards looking for patients in my situation to see what has worked and what hasn't.  And I know he will give me a piece of his liver if he is a match and it comes down to that.  Adam has been so strong so that I can have the moments of weakness.  He has been my rock.  Without him fighting for me and with me, this would be much harder than it already is.

I am also lucky to know that so many family and friends would do the same for us - fight for us in any way they can - right now prayers and well wishes are what we need the most.  Eventually we may need a piece of a liver or donations to fund a transplant that's not likely to be covered by insurance.  And we may be asking for that one day - hopefully a bit later on down the road.

The New Plan

Last week I talked a bit about the MRI results from 2/10 and coming up with a new plan for treatment going forward since the previous chemo was no longer working. 

We met with our doctor at VCS who recommended a few new chemo options: irinotecan and docetaxel are the two main drugs we could consider trying next.  Both are approved by the FDA and have been used in gastric cancer (irinotecan with particularly good response rates of 65%).  I say these are the main chemo drugs because chemo is often give as a doublet or triplet, so there were options that we could combine like cisplatin, carboplatin, or even doing docetaxel and irinotecan together.  My primary oncologist was very supportive of us going back to Hopkins and getting another opinion from Sloan Kettering. 

We went to Hopkins last Thursday (Valentine's Day) to see if they had any clinical trials I might qualify for or had any other recommendations for treatment.  The doctor at Hopkins said he would be fine with either irinotecan or docetaxel in combination with cisplatin.  In the two days between our meeting with my primary oncologist and Hopkins, I had done some research on both irinotecan and docetaxel.  Both have very strong warnings against giving the drugs to patients with hepatic (liver) impairment.  I have pretty significant hepatic impairment.  I mentioned this to the doctor at Hopkins and he said, you're right, you can't get irinotecan with a bilirubin (liver function test) greater than 3 (normal is 0.2-1.0), mine is currently 4.5.  So irinotecan is off the table for now.  Even though there weren't any good clinical trials at Hopkins, I wouldn't have qualified with my liver in this condition anyway.

The doctor from Sloan recommended against both irinotecan and docetaxel given my liver dysfunction, and suggested paclitaxel with cisplatin.  He also recommended that my oncologist talk to the radiologist who reviewed my MRI to see if they could put any stents into my bile ducts to improve the liver function (the assumption being that the tumor were compressing the bile ducts).

So I had an ultrasound to look at the bile ducts more closely - unfortunately there was no easy fix there.  The compression from the tumors is happening all over the liver as opposed to just the bile ducts.

All of this happened in a week and we were back at my primary oncologist to discuss the recommendations.  In the end, we are going with a reduced dose of docetaxel (on its own) given every 21 days.  We are hopeful that this will shrink the tumors enough to improve my liver function so we can slowly increase the docetaxel dose to normal.  Unfortunately the expected response rate for docetaxel is just 30% (but we have to keep in mind that most gastric cancer patients are older and the statistics in younger, healthier patients may be better).  If it doesn't work, we are looking at limited options for what to do next.  Probably a phase I trial specifically for patients with hepatic impairment.

So I start tomorrow with docetaxel and will be praying it works!

A Little Bit About Scans

This past Sunday I had my 10th and 11th scans, an MRI and a chest X-ray.  The results were not good, but they were what we were expecting.  I'll explain later.

First, I want to provide a little background and a history of all of the scans I have received so far.  From a health insurance perspective, I am a radiology expense nightmare!

Since June, I have have received 3 MRIs, 2 PET scans, 1 CT scan, 4 ultrasounds/sonograms, and 1 X-ray.  Why all the different scans?  Here are some definitions of the different types of scans (from WebMD):

• Magnetic Resonance Imaging (MRI): is a test that uses a magnetic field and pulses of radio wave energy to make pictures of organs and structures inside the body.  In many cases MRI gives different information about structures in the body than can be seen with an X-ray, ultrasound, or computed tomography (CT) scan. MRI also may show problems that cannot be seen with other imaging methods.  

• Positron Emission Topography (PET) is a test that uses a special type of camera and a tracer (radioactive chemical) to look at organs in the body. The tracer usually is a special form of a substance (such as glucose) that collects in cells that are using a lot of energy, such as cancer cells.  During the test, the tracer liquid is put into a vein (intravenous, or IV) in your arm. The tracer moves through your body, where much of it collects in the specific organ or tissue. The tracer gives off tiny positively charged particles (positrons). The camera records the positrons and turns the recording into pictures on a computer.  PET scan pictures do not show as much detail as computed tomography (CT) scans or magnetic resonance imaging (MRI) because the pictures show only the location of the tracer. The PET picture may be matched with those from a CT scan to get more detailed information about where the tracer is located.  A PET scan is often used to evaluate cancer, check blood flow, or see how organs are working.  

• Computed Tomography (CT) scans use X-rays to make detailed pictures of structures inside of the body.

• Ultrasound/Sonogram: During an ultrasound test, high-frequency sound waves, inaudible to the human ear, are transmitted through body tissues using an instrument called a transducer, which transmits the information to a computer that displays the information on a monitor. Ultrasound is used to create images of soft tissue structures, such as the gallbladder, liver, kidneys, pancreas, bladder, and other organs and parts of the body.

Here is a history of all 11 scans I have received so far:

6/24/2012
The day I went to the hospital, I had three scans.
1) An abdominal ultrasound/sonogram - this showed "spots" in my liver and that my liver was significantly enlarged, likely the source of the pain I was feeling.
2) An abdominal and pelvic MRI - this one confirmed the spots in my liver and suggested cancer.
3) A CT scan of my head/neck, abdomen, and pelvis.  This confirmed the presence of tumors in my liver and the lymph node in my neck. 

7/3/2012
4) A little over a week later, I had a PET scan - this showed my liver covered with tumors.

7/7/2012
5) I ended up in the ER with severe abdominal pain and they did an ultrasound.  I had moderate ascites (fluid collection) in the abdomen that was likely the result of the pain.

7/17/2012
6) I had another ultrasound that showed increased ascites but a decrease in the presence of liver tumors.

9/5/2012
7) Whole body PET scan - this test showed a remarkable decrease in tumor activity.

11/7/2012
8) Abdominal MRI - showed a decrease in the size and quantity of tumors in the liver.

12/10/2012
9) Abdominal ultrasound showed some ascites.

2/10/2012
10) MRI of the abdomen - showed an increase in size and number of tumors since the 11/7 MRI, but no tumors in the spleen, gall bladder, or pancreas.
11) Chest X-ray - showed that my lungs are also clear.

Although the MRI showed an increase in tumors (meaning the current chemotherapy regimen is no longer working), I am happy that there hasn't been further spread of the disease to other organs.  Every time I would cough or feel a pain in my side, I would worry that the tumors were spreading.  So far, this is not the case.  As it has been from the beginning, we really need to find a way to shrink the tumors in my liver.  I have lost a lot of liver function over the past few weeks, which I will talk about another time.  When the tumors shrink, my liver should start to work again.

Now we are tasked with figuring out what to do next.  We are going to Johns Hopkins this Thursday to see if there are any clinical trials that might be an option and what other treatments the doctor there might suggest.  I am going to push for something aggressive, even if it means more side effects.  I think I can handle the side effects if it means that we will be giving the tumors the best fight possible. 

When Life Hands You Lemons

I had dinner earlier this week with a friend I have known since college.  We haven't kept in touch very much over the years, but it is always nice to catch up with her.

When we sat down to dinner, she told me about a friend of hers who had cancer and has been in remission for five years.  She told me that her friend said that after her diagnosis she felt like a lemon.  That if her husband had known this would happen, maybe he would have picked someone different.  She gave her husband the chance to opt-out.  He stayed.  She is a survivor.  My friend told me this because she wanted me to know that if I had these feelings, I wasn't alone.

I cried right there at the table in the restaurant.  She apologized and then she cried, too.  It was a touching experience.  I was glad she told me because I have had those thoughts.  I have told Adam, and I know he will not be happy that I still have them, but it's not something I can control.

I spend a lot about time thinking about what all of this means for Adam.  And that's when I get most upset.  I want him to have a perfect and wonderful life.  It's not fair that cancer has limited the possibilities of my future, but why does it have to limit Adam's, too?  That's really not fair.

We have spent over seven months fighting so far.  During this time, I have felt like we are waiting for our life to start again.  How much longer will we have to fight this?  Months?  I hope so.  Years?  That's probably more realistic.  I am hoping and praying that I will beat this, but what if I don't?  What if we fight for five years and Adam has to start over?  It's not fair to him. 

I know that Adam doesn't feel this way.  I know that he would never consider a single day, even the tough ones, a waste of time.  I know that he cherishes every moment we have together, and that he wants as many days together as possible.  And so do I. 

Even though this cancer is a lemon, Adam has convinced me that I am not.  We will do what we can to make lemonade for as long as we can - I am hopeful for at least forty or fifty more years.