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. 

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. 

A Hairy Situation

Or not so hairy as the case may be.  As you probably already know, a lot of chemotherapy regimens cause hair loss.  My doctor said I would most certainly lose my hair during treatment with EOX.  And I did.

I knew it was just my hair, and that it would grow back, but losing my hair was still an upsetting and somewhat traumatic experience.  On my mom's birthday, July 24th, almost two weeks after starting treatment, my hair started to fall out.  I remember sitting on the couch, running my fingers through my hair and finding my hands full of hair.  I cried.  It seems silly to think about, but the rational me and the emotional me are often on different pages. 

That evening, Adam took me to the Hair Cuttery, and I cut off my hair.  I cut most of it in a ponytail that I still have in a plastic bag in my closet (which I admit might be a little weird).  Then I told the stylist to cut it short.  I don't think she understood that I had cancer and wanted it cut short (her English was not very good), so I had to keep telling her to cut it shorter and shorter.  I had such long hair before that I think she didn't know what to make of it. 

And here is what I ended up with:

In the next few days, my hair was slowly falling out.  I would find a few on my pillow and lose some in the shower.  And then it seemed to stop falling out!!  So I regretted getting it cut so short - what if I wasn't going to lose it after all?  And then I lost almost all of it in a matter of days starting about August 1st.  By Friday, August 3rd, I had significant bald spots all over my head.  On Saturday morning (the day of Lisa and Matt's wedding), Adam took the shears to my head and cut what was left down to about half an inch.  I continued to lose my hair over the next week or so, using a lint roller to clean it off my pillow, my clothes, the couch, pretty much anywhere I went.  In hindsight, it probably would have been easier to just shave it all off, but I just couldn't bare it at the time.

When I was planning for losing my hair, I bought two wigs (synthetic wigs).  Real hair wigs cost thousands of dollars and I didn't want to spend that much money on what I hoped would be a short-term solution.  I am glad I didn't spend a lot because I ended up not really liking my wigs.  They were uncomfortable, made me self-conscious, and were a pain to work with.  I ended up only wearing my wigs for a few occasions.  I liked the wig more when it was up because the synthetic hair just felt static-y when it was done.  I wore one to Lisa and Matt's wedding, styled by the hair stylist:

And the same one to Whitney and Matt's wedding (styled by me on the styrofoam head they gave me with the wig and then placed on my head):

I wore my wig a handful of other times, but otherwise I was most comfortable in a scarf.  I received several beautiful scarves from family and friends that I wore constantly.  The scarves were much more comfortable.  Sometimes I even forgot I was wearing a scarf and then I would see my reflection in a mirror or window and be reminded.  I would have thought I would be more self-conscious in a scarf, but I realized that no one really cares.  But I definitely got tired of wearing the scarves after a while, too.  I was ready to have my hair back!

As you can probably imagine, I lost more than just the hair on my head.  I lost body hair, eyebrows, and eyelashes.  Luckily, I didn't lose all of my eyebrows and eyelashes like some people do, so I was able to deal by just using make-up as opposed to having to try and wear false lashes for special occasions.

My hair started to grow back in October, but it has been very slow growing.  I continued to wear scarves until the middle of December when I thought I had enough coverage to go out in public.  The first day I went out without a hat or scarf, I got two compliments on my hair.  Instead of explaining my situation, I found it much easier to just say thank you and move on. 

The new chemo regimen I am on now doesn't cause hair loss, but it can be known to cause hair thinning, which might explain why my hair seems to be growing at a snail's pace (or maybe I am just impatient).  Even though getting ready in the morning has been much quicker without hair (or with very short hair), I am looking forward to having my old hair back again! 

Are you there, God?

It's me, Megan.  

As you can probably imagine, facing my own mortality has shaken my belief system a bit.  I have asked so many questions.  The most simple question is somehow the most complicated: Why?  

Why is this happening to me?  To us?  We can't know the answer to that, just like we can't know how I got cancer in the first place.  I have wondered on so many occasions what it could have been that caused this.  Was it too many lattes with Splenda from Starbucks?  Or all the Skittles and Diet Coke I consumed during college?  Not enough vegetables?  Or too many cocktails?  Skipping breakfast for years?  Or maybe eating too many sweets?  I don't know that it would make any difference now, but I wish we could know what caused this in the first place.

Another question I find myself asking a lot is: what did I do to deserve this?  How could God allow this to happen to me?  I don't believe God gave me cancer...we are imperfect creatures subject to genetic mutations.  But do I think God can heal me?  Yes, I do.  Do I think He will?  I don't know, but I really hope so.  But our dreams and God's plans plan for us don't always follow the same path.

I haven't gone to church too often since I was diagnosed.  I have been a few times, and sometimes I got emotional being there, going through all of the questions in my head, feeling sorry for myself (and for Adam), begging God to heal me.  Adam had been going to church on his own some because sometimes I didn't want to go.  But this past Sunday, Adam and I went to church together.  We still go to the same church where we were married over six years ago.   When we sat down, I opened the program and saw that they were going to do the sacrament of anointing of the sick.  I got anxious.  At first I wasn't sure I wanted to do it.  When we got to that point in the mass, the priest began to talk about the sacrament and the healing power of God.  I got emotional.  When the priest came to our row, Adam asked if I wanted to do it.  I nodded, with tears in my eyes, and moved to the end of the pew.  Adam stood with me, with his hand on my shoulder as the priest anointed me with oil on my forehead and both of my palms and said a prayer for me.  It was an emotional experience for us.  I am glad we went to church together that day.  I am glad we had the opportunity to experience that together. 

Although I might not understand why, I am going to keep praying and asking God to make healing me a part of His plan. 

Second (and Third and Fourth) Opinions

Last Thursday, Adam and I went to Johns Hopkins for our third second opinion (or our fourth opinion?).

When I was first diagnosed, we received recommendations from a lot of family and friends about where to go for treatment (Johns Hopkins, Georgetown, MD Anderson, Mass General, etc.).  We decided to start by getting a second opinion at Georgetown University since it was close and I could easily get regular treatment there.  Georgetown also has a well know gastric cancer department, so we felt like we were going to a good place.  At first, I didn't like the doctor we met with.  He essentially agreed with the diagnosis from Virginia Cancer Specialists, agreed with their recommendation to start treatment with the EOX protocol, and agreed that I would live with cancer for the rest of my life.  He thought I was too sick to wait to start a clinical trial (it would take several weeks to start treatment in a trial).  He said he knows the physicians at Virginia Cancer Specialists, he works with them often, and thought I should continue getting my treatment there.  He said he was happy to meet with us again in a few months if the treatment didn't work or if we needed any recommendations, and then he sent us on our way.

I guess I was under whelmed because I had expected that a cancer center with a larger GI focus would have more answers.  I wanted him to tell me to come there for treatment, that they can get results that community cancer centers can't, that because I am young, he wants to be aggressive and fight this with us.  It was disappointing that didn't happen, but at that time, I was so sick that it really didn't bother me much.  I was ready to go home and start treatment right around the corner from my house.  So that's what we did. 

After making good progress on EOX, I started to be unable to get in full treatment cycles.  EOX includes two weeks of oral chemo, but my blood counts were so low after a week that I had to stop treatment to get Neupogen (a white blood cell stimulating factor).  After six rounds of EOX, I was doing pretty well.  Earlier PET scans had shown a dramatic decrease in tumor activity, my tumor markers were down, an endoscopy showed that the tumors in my stomach were gone, but there were still tumors in my liver to contend with.  So we decided to take a short break in treatment to get some more opinions.

Adam scheduled appointments for us to go to Memorial Sloan Kettering in New York and back to Georgetown.  Sloan Kettering is the second ranked cancer hospital in the nation after MD Anderson in Houston, TX.  My local physician fully supported us going to Sloan for another opinion; he had done his residency there and told us they have a huge GI cancer center.  He thought they would be excited to see someone so young.

When we got to Sloan, we were shocked at how large the GI cancer center was.  The waiting room was huge and it was packed with patients.  I noted several other younger female patients in the waiting room.  When we met with the physician, he was nice, but essentially told us that we were already on the right track.  He recommended a change in treatment - he thought we should stop the epirubicin (the E part of EOX) and continue with oxaliplatin and 5FU (5FU and Xeloda are in the same family, just different routes of administration).  He told me it was unlikely that the tumors in my liver would ever go away and that I was doing fine as long as they were shrinking or getting smaller. 

I was really upset after our meeting at Sloan.  Is it too much to ask for to find a doctor who wants to be aggressive?  One who thinks that progression-free survival isn’t good enough?  I’m 32, not 84!  A few more months or years is not the plan I am going for.   It was beyond upsetting.   Here we were, at the second best cancer hospital in the country, meeting with a physician who specializes in gastric cancers, and we were getting the same news.  Granted, his recommendation to stop epirubicin and change from Xeloda to 5FU were both good recommendations, I was just expecting a lot more.

By the time we went to Georgetown for the second time, I had more realistic expectations.  The physician agreed with the recommendation from Sloan to change treatments.  He still didn’t feel a need for me to come there for treatment.  And then he said the only optimistic thing I had heard from a physician – sometimes the tumors just go away, maybe that will happen.  It’s crazy to think that’s as good as it gets, but I was happy to hear that.  

That brings me to our third stop – Johns Hopkins.  Hopkins is the third ranked cancer center in the country, and they have a physician who only sees patients with esophageal and gastric cancer.  I did not have high hopes going in to this one, given our previous experiences, but it turned out to be a good trip.  He started by telling us what every other doctor has already told us – it is unethical to stop a treatment that is working.  As long as I am not seeing disease progression on my current treatment, I should continue with that for as long as possible.  But, he also told us about some of the research they are doing that may be an option down the road.  The study that he would recommend would be for two drugs that they are calling “chemo primers.”  The drugs are not chemotherapy agents themselves, but the intention is that they would be given to cancer patients to improve tumor response to subsequent chemotherapy.  This isn’t an option for me now, but it might be a good route if FOLFOX stops working for me.  I guess we will have to wait and see. 

So we have been to two of the top three cancer centers in the country, and we have seen four different physicians (including the physician I see at Virginia Cancer Specialists).  I think we have heard all we are likely to hear for the time being.  It is frustrating that there aren’t more options and that so little is known about stomach cancer treatments, but we will likely be back at Johns Hopkins and Georgetown in the future to figure out what will be next.  In the meantime, I am hoping that the clinical trials that are going on across the country find something promising.

Looking Back

A lot of people have asked me how I found out I have cancer.  I wrote a bit about that here.  But looking back, I realized that I had symptoms long before I went to the hospital.

I remember thinking that something wasn't quite right starting in April 2012 (about 2 months before I ended up at the hospital), but I had chalked the symptoms up to stress.  I started being unable to complete my usual workouts.  After running a 10-mile race on April 1st, by April 21st, I couldn't make it 3 miles without stopping to walk.  I was playing on a softball team at the time and would get really winded running the bases or making a play in the field.  Eventually I started to get out of breath walking up a flight of stairs.  Then I started feeling like I wanted to sit down all the time.  I would even sit down while brushing my teeth.

I started feeling queasy from time to time, but I didn't think much of it.  I was eating more, working out less, and not gaining any weight.  My bowel movements changed.  In late May, I developed severe pain in my right shoulder - I tried stretching, massage therapy, and eventually muscle relaxants did the trick.

All of these things together seem to indicate that something wasn't right.  I never even thought that something serious might be wrong.  I was stressed at work.  I thought I was getting out of shape.  It never occurred to me to see a doctor.

Sometimes I can't help thinking that if I had gone to the doctor earlier, maybe they would have caught it at stage II or III instead of stage IV.  Or maybe the chemo would have worked better earlier on.  And then I remember stories about people with stomach cancer who go to doctors for months and are told they have acid reflux or some other benign condition and are sent home.  In some of those cases, when they finally find out it is gastric cancer, it is too late and treatment doesn't work.  My doctors think the cancer could have been growing for a year or even two years before we found it.  It is crazy to think that something like that can be happening inside your body for so long before you realize it. 

So, who actually goes to a doctor and tells them they get tired walking up a flight of stairs?  So I don't beat myself up about it.  I didn't put the pieces together at the time, even though they seem obvious in hindsight.  Will I tell people to pay closer attention to changes in their health?  To see a doctor even if something seems minor?  I definitely will.

For Charity

A friend is running a marathon this spring and is raising money for the American Cancer Society.  He asked if Adam and I would be willing to share our story on Facebook as part of his fundraising efforts.  We were happy to do so.  After reading some of the other stories he had already shared from others, this is what I decided to share:

I went to the Emergency Room at Virginia Hospital Center on Sunday, June 24, 2012.  That was the day I found out I had cancer.  It took almost two weeks for me to receive a diagnosis: stage IV stomach cancer.  What does that diagnosis mean?  It means that currently there is no cure.  Chemotherapy is given to shrink tumors, alleviate symptoms, improve quality of life, and prolong survival for as long as possible.  The statistics say that I had a less than 15% chance of living 6 months after diagnosis and less than 4% of making it to 5 years.  I've seen three doctors at different cancer centers and only one mentioned the possibility of the tumors ever going away.

The diagnosis was devastating.  It still is.  In a day you start to realize that your plans for life, your dreams for the future, have a slim chance of coming true.  Will I ever have kids and get to raise a family?  Will I get to grow old with my husband?  How will all of this impact my friends and family?  I am lucky to be responding well to treatment.  I am able to spend time with family and friends and feel almost normal at times.  And I am hopeful I will beat the odds and defeat caner in 2013.

I am thankful for all those of have dedicated their careers to cancer research, to the patients who have participated in clinical trials, and to all of those who have helped fund cancer research to improve available treatments and to find cures.  I am hopeful I will be here when they find a cure for stomach cancer. 

I know many of you have already seen this, but I wanted to have it documented as part of our journey. 

Tumor Markers

On Wednesday I received a call from one of the nurses about my most recent tumor markers.  They are up.  Way up.  This isn't good news, but it isn't all bad news either.  Let me explain.

Every few weeks before starting a new round of chemo, I have blood drawn to check my CBC to make sure my blood levels are high enough to start treatment.  They also test my liver function and tumor markers, among other things.  There are two tumor markers that they check: CEA and CA19-9.

• CEA (carcinoembryonic antigen) is a protein found in elevated levels in those with solid tumor cancers, including gastric cancer.  The normal range of CEA is less than 2.5ng/mL.

• CA19-9 (carbohydrate antigen or cancer antigen) is an antigen commonly found in elevated levels in pancreatic cancer and gastric cancers. The normal range of CA19-9 is less than 35U/mL.

When I was first diagnosed on 6/24, my CEA was 232 and my CA19-9 was 11,058.  By the end of July, my CA19-9 was up to 14,945.  It could have been even higher between 6/24 and when I started chemo on 7/11.  Tumor markers can also increase in response to chemotherapy.  When tumor cells are responding to chemo, they can release CA19-9 into the bloodstream causing a temporary rise in CA19-9 levels.

By mid-September, my CEA had decreased to 8.7 and my CA19-9 was down to 253.  

When the nurse called me on Wednesday, she told me that my CEA is up to 72 and my CA19-9 is up to 9,371.  She was really nice and told me not to panic before she told me the numbers.  She said that my doctor wanted her to tell me that this can be expected after taking a break in treatment.  I took a short break in treatment in November and then had to delay treatment in December because of low blood counts.  This likely allowed the tumors to grow back a bit.  My doctor expects the numbers to be down next time now that I am back on track with regular treatments.  I am hoping the increase is partly due to the tumors responding to the new chemo regimen I started in December. 

I was upset when she told me the news, but I'm trying not to let it get to me.  They will draw blood for labs again this Tuesday, so I should have the results in a week or so.  Fingers crossed the numbers are down!  

Depression

I was at one of my usual appointments with one of the nurse practitioners when she asked me if I was depressed.  Me?  Depressed?  No way!  I immediately told her I was fine.  I was surprised by the question.  Honestly, I had never really thought about whether or not I was depressed.  So I started thinking about it.

I don't think I have chronic depression, but I've realized that I definitely have days where I am more depressed than others.  There are times when I don't feel like responding to emails or text messages from friends and family, even though I have the time.  There are times when I don't want to talk on the phone with people, to hang out with friends, to do anything at all.  Sometimes I just want to be alone.

There are times when I have a really hard time with motivation.  I will want or need to do something, but I just sit there.  And sit there.  When it's one of those days, it can take me a long time to start moving.  I will sit, doing nothing, for a long time before I will myself to get up and do something.  OK, maybe I am depressed.

I consider myself a generally happy person.  I definitely would have said that before cancer, and I still think that I am.  At least more recently.  Realizing that maybe I am depressed from time to time is good - maybe that will help me get myself out of that mindset. 

Early on after my diagnosis, I would think a lot about the sad things in coping with something like this.  I would think about dying, about not having all of the experiences I wanted in life, about the future Adam and I were supposed to have, about how unfair this all is, about how much I hate that Adam has to go through this with me, about me leaving him behind, about my family.  I cried a lot.

At the end of a day that was particularly rough for me emotionally, Adam told me he didn't want this to ruin my spirit.  I took that to heart.  I have a choice to be happy, to enjoy life, and to do what I can to beat this.

I know that positive thinking is important.  I try to divert negative thoughts by telling myself that I am strong, I am a fighter, and I will beat this.  I try to focus energy on fighting the tumors.  The Pac-Man visual hasn't worked for me.  Instead, I envision a tiny version of me inside my liver punching, kicking, and destroying the giant cancer cells.

Even though I know the power of positive thinking/energy or whatever you want to call it, there are still times when the negative thoughts creep in my head and make me sad.  I am hoping I get better and better at focusing on the positive.

Back to Work

After 6 months and 15 days, I went back to work part-time yesterday.  I had a lot of mixed feelings about going back to work.  I was excited to see my coworkers, and I was looking forward to feeling somewhat normal again.  But I was also apprehensive.  I was nervous I wouldn't be as good at my job as I used to be, that there wouldn't be a place for me anymore, or that I wouldn't remember how to do things.

I know my coworkers care about me.  While I was out, I received regular care packages from my office with thoughtful gifts and countless cards and notes.  I received regular emails and text messages from people across our business unit.  It was good to know they hadn't forgotten about me and were rooting for me to get well.  Even former coworkers sent me notes and gifts.  I was humbled by their generosity and thoughtfulness.

So, when I arrived on Monday morning, many from my department met me at my door to greet me.  And I found my office looking like this:

This was somewhat of a nice gesture, but also a prank - my colleagues have a history of pranking people when they are out of the office on vacation (think saran-wrapped office supplies, missing monitors, forts made out of cardboard assembled over cubes).  All things considered, they were nice to me and let me off the hook fairly easily.  Plus, our department head made sure the team cleaned up for me :).

It was nice to be back!  I didn't get a lot done because everyone kept coming by to welcome me back.  At the end of the first day, I was happy that I was back.  I really do work with a great group of people. 

I went to lunch on Monday with some of my coworkers from my previous department who have continued to treat me like part of their team.  During my absence, I learned that they created a network folder called "Project Megan."  They sent me cute videos they made and an iPad!  I was floored by their generosity.

Today I went to work with two former coworkers who have moved on to other opportunities.  During lunch, one of them told me how she learned that I had cancer.  One of my other coworkers called her in tears and told her she wouldn't tell her what was wrong until she stopped driving and pulled over.  They both cried on the phone together thinking about me.  It was a touching story (and it made me cry to hear it).  I'm so thankful to know they cared so much. 

With such great support from my boss, general manager, and all of my coworkers, how could I not be happy to be back?  I know that they will all be there to support me.  I am planning to work about 5 or 6 hours a day for a while (except for chemo days), so I am hopeful I can get back into the swing of things quickly and start making some meaningful contributions.

Chemo: Round 9

Today I am receiving my ninth round of chemotherapy.  People often ask me how many rounds I will have to do, when I will be done with chemo, etc., but those are questions I can't really answer because we just don't know.   We don't know because, at least for now, there is no cure for stomach cancer.  About one week after I started chemo, I met with the on-call physician at Virginia Cancer Specialists.  In a rather curt manner, she told me I would be on chemotherapy until I died.  This wasn't really something I had talked about with my regular physician, so to hear her say that so bluntly was a little shocking.  I'm still hopeful all of this is going to work, that I'm going to be cured.

I started my first round of chemo on July 11, 2012 with the EOX protocol.  EOX is a combination of epirubicin, Oxaliplatin, and Xeloda given at three-week intervals.  Oxaliplatin is given intravenously over a two-hour period, then epirubicin is given via an IV push over about 5 minutes per syringe, and Xeloda is an oral drug taken twice daily for two weeks following chemo.

After six rounds of EOX, we switched my chemo to FOLFOX,  a combination of Oxaliplatin, leucovorin, and 5-FU.  5-FU and Xeloda are essentially the same drug, except 5-FU is given intravenously over a 48-hour period instead of taking pills for two weeks. 

I started my first round of FOLFOX at the end of November and am currently receiving my third round as I type.  This regimen is given every two weeks instead of three, and instead of taking Xeloda pills at home for two weeks, I wear a pump containing 92mL of 5-FU that infuses over 48 hours.  Then I go back to the infusion center when it runs out and they disconnect the pump.  It is a pain to carry the pump around for two days, but so far it is worth it because I can get the full dose in a shorter about of time and the FOLFOX regimen has considerably fewer side effects than EOX.   My hair has started to grow back.  I don't feel as nauseaus.  And I can manage low blood counts without stopping treatment.  Let's hope this one works.

Discovering I Have Cancer

Many people have asked me how I knew something was wrong and ended up at the emergency room.  So here's the story.

It started on Tuesday, June 19th.  I was sitting at my desk at work and noticed a new dress I had bought the week before was tight around my rib cage/upper abdomen, not someplace you generally gain wait in a week.  I realized my abdomen was swollen and figured I should go see an internist to get it checked out, but I was scheduled to go away on business travel for the rest of the week and was assigned jury duty for Arlington County the following week.

On Wednesday morning, I had a hard time getting out of bed (let's be honest, that's not that unusual for me, but this was worse than normal).  After work, I played in a double header softball game.  I got out of breath after every play and struggled to catch my breath after running the bases.  I thought I was getting really out of shape.  After the game, I cried when I said goodbye to Adam.  Yes, I am an emotional person, but for some reason I really didn't want to go on this trip.  Then I drove to northern New Jersey for a seminar I was giving the next morning. 

On Thursday, I gave my seminar, but got so tired standing in front of the room.  After the seminar, I was driving to Abington, PA for a seminar the following morning and noticed a lump in my neck in the rear view mirror.  I was worried, but thought maybe I was fighting an infection.  When I got to my hotel in Abington, I slept for three hours before dragging myself out of bed to find dinner.  That night, I googled swelling in upper abdomen and swollen lymph nodes.  I made myself worried - the results were sarcoidoisis and lymphoma, among other things.

On Friday, in the parking lot after the seminar, I called and made an appointment with an internist for a week later.  Then I drove the four hours home. When I got home, I didn't want to do anything but lay on the couch.  I had plans to get together with the girls for our monthly wine club, but I cancelled at the last minute. 

On Saturday, Adam and I did yard work.  I was so tired.  I sat on the ground while I pulled weeds.  The swelling in my abdomen seemed to be getting worse and it was painful and hot to the touch.  I don't remember what we did Saturday night.

On Sunday morning, June 24th, I asked Adam to drop me off at the emergency room on his way to church.  He offered to stay with me, but I told him to go to church and come back - I figured I would be waiting a while.

At Virginia Hospital Center, I was taken back into the emergency room really quickly.  I discussed my symptoms with the doctor.  The nurse gave me a nasty tasting cocktail for indigestion.  It didn't help.  The doctor sent me for an ultrasound.  Adam made it back just in time for the doctor to go over the results.  There were spots on my liver causing my liver to be enlarged (thus causing the swelling and pain in my abdomen).  He said it could be a number of things, with the worst case scenario being lymphoma.  I cried.  Adam held my hand and told me it would be ok.  The doctor told me that lymphoma is a curable cancer, and it typically involves just four months of chemotherapy.  They wanted to admit me overnight for more tests.  That day I had two MRIs and a CT.

On Monday, I had a needle biopsy of the lump in my neck.  Doctor after doctor came to my room.  At the end of the day on Monday, Dr. Rodriguez, an oncologist from Virginia Cancer Specialists, came to see me.  She did a physical exam and told me that the best case scenario was that I had lymphoma because that is a curable cancer, but it was likely some other form of cancer, she just didn't know what kind.  It took about two weeks to figure out that I had stomach cancer, but that's another story.

Looking back after my diagnosis, there were signs for months that things weren't right.  At the time, I thought the symptoms were related to stress.  Adam and I had some things we were dealing with at home, and I was working on a big opportunity at work.  I think I will share my thoughts on that later. 

Six Months

This past Monday was the six month anniversary of the day I walked into the emergency room at Virginia Hospital Center with pain in my abdomen and a lump in my neck.  I found out almost immediately that I had cancer, but it took almost two weeks for the doctors to diagnose me with stage IV stomach cancer.  Since then, our lives have been turned upside down.

My doctor never game me a prognosis, and quite frankly, I never asked for one.  I didn't want to know.  I did know that there is no "cure" for stage IV stomach cancer.  The consensus from all of the doctors I saw was that I would be on chemotherapy for the rest of my life, I just didn't know how long they thought that would be.  Adam knew but didn't tell me.  The latest statistics for my diagnosis indicate a 15% survival rate at six months and a 4% survival rate at five years.  I am happy I beat the odds for six months, and I am confident I will make it to five years, but it's sometimes scary to think about how powerful this type of cancer can be.  In November, my oncologist told me that if I had asked him in July if I would be doing as well as I was, he would have said the chances were slim.  I am so thankful I responded so well to the initial chemotherapy.

It is strange to think about the past six months.  I think for a lot of that time I have felt like my life has been on pause and I'm waiting for it to start again.  Sometimes I still feel that way and probably will for a while.  It's hard to make plans when you don't know what the next weeks or months will look like.  It's not that I haven't been able to do things while going through treatment.  I made it to three weddings, four football games, and several dinners and celebrations with friends and family.  I was lucky enough to respond well to the first line therapy to enable to live somewhat normally.  But a lot of my time is spent in treatment, dealing with the side effects of treatment, and meeting with doctors.  Adam has spent a lot of time taking care of me, doing research on treatment options, making appointments with specialists, and finding ways to try and make me better.  It makes me sad to think about what this has done to his life and to our plans for the future.  Even so, for now we are looking forward to making progress in the next six months and taking steps to eventually be cancer-free.