Thanks

I wanted to start off by simply saying thanks to some of the many people who deserve a thank you from me. 

Thanks to everyone who came to the services for Megan last week.  This may sound like a form response, but I’m not really sure how else to say it – I truly appreciated everyone who took the time and effort to come.  I’ve been on the other side of that receiving line at a visitation/wake service before, and most times I wasn’t quite sure what to say or even know if the bereaved family wanted me there.  I’m sure other people might be different, but I will say this: as tough as it was to get through those days, seeing everyone that came helped me.  Even if you had nothing to say, it was ok.  It meant so much to me that you came.  You might have thought that it was such a small thing to do (which is what I’ve felt in the past), but it wasn’t.  You may have thought that you were just one person in a room of 200, but you weren’t.  I needed the support of each and every one of you, and it’s definitely changed the way that I view memorial services.  Please remember this in the future when other people in your life experience tragedy and you’re not sure whether or not they need the support of your presence. 

Thanks to everyone who took the time to send me a note of condolence.  Whether it was simply a signed card, a text, a facebook post/message, or a thoughtful handwritten note, again, I truly appreciate it.  I especially liked reading some of the notes about the ways that you will remember Megan and how she impacted you.  I’ve been meaning to respond to each of you individually, but I’m not sure when I’ll get around to that.  So thank you.

Thanks to everyone who has offered support that goes above and beyond.  This includes family, our local friends, Megan’s coworkers at Covance, and several others.  I know that I’m not the easiest person to provide assistance to, as I’m a pretty private and independent person.  But knowing that there are people there to help when I need it provides a level of comfort and support that allows me to feel stronger.

And thanks to everyone who made a donation to Can’t Stomach Cancer in Megan’s memory.  You donated over $25,000.  That’s unbelievable.  It’s a testament to the strength inherent in the network of family and friends that surrounded Megan.  I talked for 90 minutes with the founder of Can’t Stomach Cancer this week, and in the future I will be providing more information about what they are doing to help raise awareness, provide patient support, and generate funding for research.  But know that you have already begun making a difference for others fighting a disease that provides little opportunity for hope.

 

The fight continues, with a new chapter

(Please note: This is Adam writing.)

Megan had been talking about starting a blog for at least a year.  She always enjoyed reading the blogs of her friends and coworkers, and thought that she had enough interesting things to say that she should share them with others.  But she got stuck on one thing – a name.  She couldn’t decide what to call the blog.  Since it was just going to include general thoughts and wasn’t going to be about one thing in particular, she had a hard time trying to pick a word or phrase that could sum it all up.  (I recently had a hard time summing up her life into 4 pages, so I can sympathize with her attempt to find the perfect title.)  For months, she threw out ideas, some of which I liked, and some of which I didn’t.  I tried to help, but we could never come up with the home run, the one that said, “THIS is it!”  After a few months of trying, life got in the way, and the blog fell to the backburner.

For most of 2012, Meg didn’t talk about starting a blog anymore.  Then in December, she hinted that she might be ready to finally do it, for real this time.  She said that she had a lot of thoughts in her head that she needed to get out, things that were too tough to talk about in person, even with me.   I thought this was a great idea.  I knew she was having a tough time mentally, but she didn’t want to go to support groups or talk to someone, because those groups would make it harder to remain positive and to not break down emotionally.  She spent a few days setting it up without really telling me, loaded all the pictures on, and wrote the first two entries.  One day she emailed me a link and asked me to review it.  She never had to ask if I thought the title was a good idea.  She took something that I said to her one night when I was struggling to keep her spirits up, and she modified it to include both of us.  She told me that she made me an author and that I could contribute if I wanted to.  I fully intended to, but then her posts started getting so emotional, and I didn’t want to break her stride. 

Megan’s last post was on March 10, 2013.  Her liver, covered with metastatic tumors from gastro-esophageal cancer, was already on a downward spiral, and we were running out of options.  It quickly got worse, and Megan passed during the first hour of March 21.  I am so glad that she was able to leave us with two months worth of blog entries.  We had so many tough conversations over her last year.  Some of the things she said are burned into my head, but many of those conversations I won’t remember as time passes.  So to have a short record of Meg, in her own words, is a gift she left for us. 

But the story can’t end there.  Last summer, I scoured the internet looking for information about stomach cancer.  I found a few blogs that had some good information, info that I wasn’t finding anywhere else.  But many of those blogs had one common feature – the entries ended suddenly, without any warning.  There was usually a post about how everything was going well, then one about some sort of minor complication, and then that would be it.  I don’t want Megan’s story to end that way.  She could have named her blog “This is My Fight”, but she didn’t.  It’s our fight, and my end of that deal isn’t over.   I’ve only just started to figure out exactly what I can personally do to make a difference in the fight against stomach cancer; you will hear more about that in the coming months.  But what I do know I can do is at least try to finish the story on this blog, so that others can learn from our experience.  I’m an engineer, not a writer, so I’m not sure how easy this will be or how often I will post.  But I also have thoughts in my head that I need to get out, and I will try to do it here, openly and honestly.  I am hoping to write about the following things:

• What we learned about cancer during Meg's battle
• Info about stomach / esophageal cancer
• Things to be aware of as a caregiver
• My life as I try to deal with the aftermath of Meg's cancer
• Megan

I can’t promise that this is going to always be a positive blog, full of uplifting stories and memories.  I’m not really sure how I’m going to be feeling weeks or months from now.  But one of the things I’m most scared of is forgetting.  I don’t want my memories to become cloudy as the years pass by.  So I’m writing this for myself, but also hoping that some of you will continue to read it.  And I hope that at least one person scrambling for answers after hearing a stomach cancer diagnosis will be able to find this blog and quickly get up to speed on the things it took me 9 months to figure out.   

Hiatus

Sorry for the two-week hiatus.   I have had a rough couple of weeks following my 12th round of chemo on February 21st. 

I started a new type of chemo for round 12: Taxotere (aka docetaxel).  It has been a lot tougher than I anticipated.  The main side effects of Taxotere include:

• Low white blood cell count (this can increase your risk for infection)
• Low red blood cell count (anemia)
• Fluid retention with weight gain, swelling of the ankles or abdominal area
• Peripheral neuropathy (numbness in your fingers and toes)
• Nausea
• Diarrhea
• Mouth sores
• Hair loss
• Fatigue and weakness
• Infection
• Nail changes
• Vomiting
• Muscle/bone/joint pain (myalgias and arthralgias)
• Low platelet count (This can increase your risk of bleeding)

I have experienced most of these in the past few weeks, which might help explain why I haven't been feeling so well and have been MIA as a result.

I am hoping round 13 will be a bit easier on me as my body adjusts to the new chemotherapy regimen.

I hope to be back with another post soon!  In the meantime, continued prayers are appreciated!

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.