How I came to realize what a Stage 4 Stomach Cancer diagnosis meant

Meg went to the ER and was admitted into the hospital on a Sunday.  That night, she had several scans performed, and we were waiting for a doctor to come by to tell us what they found.  As I mentioned previously, at this point they had told us it was most likely an infection or some other benign condition that caused the liver spots to appear on her ultrasound.  Meg did some Googling and was coming up with the type of things they talked about on “House” – sarcoidosis, melioidosis, and a handful of other things that I had maybe heard of, but really had no clue about when it came to prognosis.  Meg understood this stuff better.  She had her Masters in Public Health, worked in pharmaceutical consulting, and always had an interest in medical topics.

Nobody came by that night with the scan results, but early the next morning someone came in that we hadn’t met before and started asking Meg some questions.  I think he was some sort of radiology assistant, but he didn’t have the best bedside manner, and Megan eventually asked him, “Why are you asking me these questions?”  He responded by blurting out “Well, we’re thinking lymphoma.”  At that moment, I was somewhat oblivious to what that meant -  to be honest, I wasn’t even sure whether or not lymphoma was a type of cancer.  Meg obviously knew; when she ran the marathon she did it with Team in Training, who raises money for leukemia and lymphoma research.  But her immediate reaction left me guessing, because she kept an even temperament and continued answering the guy’s questions.   It wasn’t until he left the room and closed the door when I started to realize.  She turned to me, with the tears she was holding back swelling in her eyes, and said “I hope he’s wrong.”  That is a moment I will never forget.  The look on her face, the way she said it.  The things that I was slowly going to comprehend over the next several weeks, she already knew, and was digesting within moments. 

So we spent most of the day preparing ourselves for lymphoma, and trying to understand what that would mean, how it would change our lives.  Depending on the type, I was seeing 5 year survival rates from anywhere between 50 and 95%.  So while it was obviously extremely scary and not what we wanted to hear, Meg was still very healthy at that point and I just figured that this was a bump in the road.  I thought about the other people I had known that got cancer at a young age and how they seemed to be living through it.  One of Meg’s classmates at UVA had ovarian cancer during college, and the last I heard, she was doing well.  And a girl that briefly dated one of my friends had breast cancer in her 20’s, and from what I could tell on facebook, she was also doing ok.  So that was my initial impression.  People in their 20’s and 30’s could get cancer, but because they were young they would likely get through it and be able to go on living their life.

Late in the afternoon, an oncologist came by for the first time.  That made it feel real, and it also made me much more scared.  She explained that they still really didn’t know what it was, and that we should be hoping that it was lymphoma, as that would be one of the things with the best prognosis.  (What I didn’t understand at that moment was this: if it wasn’t lymphoma, it was likely either liver cancer or metastatic cancer of some other origin.  Both of those things are not good.  Metastatic cancer means that the cancer has spread beyond the initial site, and there is no cure for many types of metastatic cancer.  So metastatic breast cancer means that there are tumors found in locations other than the breasts.  Once it spreads, the treatment options become much more limited.  In most cases, you can no longer just go in and perform surgery to cut out the tumors.  And you usually cannot just perform localized chemotherapy or radiation.  You most likely need systemic chemotherapy that impacts your entire body.)

After the oncologist left, Meg started to eat some food, and I went into the bathroom and cried for the first time.  I couldn’t believe this was actually happening.  I think what scared me was the fact that they didn’t know what it was, and I knew even less.  They needed to biopsy one of her lymph nodes, and we got the results that Friday.  We went to the oncology office and met with a different oncologist, because the one that came to our hospital room had gone out of town.  The oncologist we met that day was Dr. Feigert, who we ended up liking and working with.  But that day, he didn’t have good news.  The biopsy confirmed that the lymph node was cancerous.  Strike 1.  And it wasn’t lymphoma. Strike 2.  And they still didn’t know what type of cancer it was.  He said it was most likely breast or colon cancer.  And now, after spending all week hoping for no cancer, or at least lymphoma, we were told that we wanted it to be breast cancer, as that would be the next best prognosis.  They scheduled Meg for a PET scan the following Tuesday, and sent her biopsied tissue out for some tests.   The doctor told us the waiting would be hard, so to try to not stay in the house all weekend.  We cried in the parking lot, in the car, and back at home with her parents.  Then Meg got herself together, and we went out for dinner at Rio Grande, like so many Friday nights before it.  =)

Tuesday morning, before she went in for the PET scan, we got a call from the doctor telling us that it wasn’t breast cancer, as the tissue had tested negative for that.  So now they were leaning towards colon cancer, but the tests weren’t conclusive.   So in order to classify what it was, they would have to find the “primary” tumor, which hadn’t shown up on any of her first set of scans.  Until then, they would just call it “metastatic cancer of unknown origin.”  Another thing I didn’t fully understand at that point is that the reason it is important to know where the cancer originated is because that determines what type of chemotherapy has the best chance of working.  Heck, I didn’t even know there were multiple types of chemo!  Our doctor told us to go ahead with the PET scan, as hopefully that would show something, but he also scheduled Meg for an endoscopy and a colonoscopy on Thursday.  If the primary tumor was in her colon or stomach, those tests would hopefully find it. 

So I took Meg in for the PET scan, and they had to inject her with some radioactive material and wait for almost an hour before doing the scan, so I had a bit of time in the waiting room.  I starting Googling colon cancer.  And I started to learn about what it meant when colon cancer spreads to the liver and lymph nodes.  That is called stage 4, metastatic cancer.  So then I looked for a chart explaining the different stages, and I saw that stage 4 was the last stage.  There is no stage 5.  I walked outside the hospital and called Meg’s dad, and told him that the doctors were now telling us colon cancer, and from what I could tell, it was at stage 4.  I struggled to keep it together while telling him this, and we didn’t really know what to say to each other.  Meg’s parents were on the east coast for a planned week at the Outer Banks with Tristen and Simon’s family, and we convinced them to go ahead with the trip to the beach, especially since we had lost power that weekend due to the DC derecho.  But a few minutes after we hung up they got on the road and headed back up to Arlington. 

Meg was in good spirits when she got done with the scan, and starting telling me about how she was chatting with the lady in there about something.  So I didn’t really tell her about anything I found online.   I figured if she wanted to know, she would ask.  Or maybe she already knew.  But I felt that it was important for me to remain positive in front of her.  I didn’t want to be bringing up all the scary stuff over and over.

That Thursday, Meg’s mom took her for the colonoscopy/endoscopy.  We had so many tests done, and for everything else it took at least a day or two before we got the results back.  So I figured this would be the same type of deal.  She would go get the exam done, and we would get the results when we met with our oncologist the next day.  So I decided to go to work and let Meg’s mom accompany her to the exam. I’m trying not to have any regrets, realizing that I throughout this process I made the best decisions I could based on what I knew at the time.  But I wished I was there for this one, as it was one of the only times I wasn’t there with her when she got some significant news.  The gastroenterologist came right out after the procedure and said that her colon was clean, but he found a tumor in the junction between her stomach and esophagus.  Meg called me and told me they found the tumor.  She said it was stomach cancer, and started crying.  I realized later that she actually thought stomach cancer might be better than colon cancer.  (It is not.  I think survival rates for colon are slightly better. In fact, because stomach cancer receives so little funding, many of the treatment options for stomach cancer are drugs that were first developed for colon cancer.)  But I think the fact that they were finally telling us exactly what she had was tough.  As long as it was an “unknown primary” we still had hope that maybe it was something like breast cancer, and they just couldn’t find the primary tumor.  So now I started googling stomach cancer, and my world starting falling apart.  I saw prognosis numbers like 15%, and 5%.  I’ve read some literature about grief recently, what people go through when they lose a spouse.  It says it may be common to feel like you’re in a fog for a week or two.  For me, the fog started at that moment.  The next night, I got on the computer and wrote this:

July 6, 2012

I bawled like a baby while driving home from work today.

Same thing happened yesterday.  Yesterday, when my wife Megan called me and told me she had stomach cancer.  My 31 year-old wife.  Who ran a marathon a few years ago, works out regularly, and eats a healthy, mostly vegetarian diet.  Stomach cancer.  Metastasized to the liver.   I looked it up online and one of the first statistics I saw was that only 15% of patients diagnosed with advanced stomach cancer live for 6 months.  I felt a lump in my throat. 

It had been nearly two weeks since I took Meg to the ER with abdominal pain, and we soon learned it could be serious.  But staring at that 15% number, it finally became real.   A realness that quickly faded into something that felt like a dream.  I told myself to wake up, that this couldn’t really be happening.  I gathered myself, and started stumbling towards the door like a zombie, hoping I didn’t walk past anyone on my way out.  I needed to talk to someone, but I didn’t want to talk to anyone.  Didn’t know what to say.  I dialed my mom’s number, but she didn’t answer.  I saw a large rock in the shade under a small tree, and sat down on it.  I looked at the phone in my hands, trying to decide if there was anyone else I could call.  But before I could make up my mind, my body made the decision for me.  The phone dropped from my hands, and I just sat there, staring at the grass.

So that’s how I spent the first two weeks.  I started not knowing anything about cancer, and ended in a fog after getting worst case scenarios come true day after day.  There are reasons the doctors kept telling us to hope for lymphoma or breast cancer.  First, the odds were that it actually was one of those types of cancers, as they are far more common, especially for a female Meg’s age.  And second, I think they wanted us to be relieved that it was one of those cancers and not something worse.  So they probably tell that to everyone, and most of the time, people can hopefully take some level of comfort in the fact that they have one of the “common” cancers, one where there are lots of targeted research and trials.  But that didn’t work out for Meg, and it doesn’t work out for tens of thousands of people diagnosed with stomach and esophageal cancers in the US each year. 

I’m trying to end these blog posts on positive notes, and it isn’t always easy.  What I can say is that not all stage 4 diagnoses are the same.  They are especially different across different types of cancer, but even just within the realm of stomach cancer.  The degree to which the cancer has spread can be drastically different.  And there are new drugs that provide better survival rates if you can qualify for them (you need to test positive for certain markers, which I’ll explain in the future).  I met several people online that have been living with stage 4 stomach cancer for five or more years, and are doing well (although that most likely means they are going to be on some sort of chemo drug for the rest of their life).   So there is hope, and you need to maintain that hope if you are currently fighting.

But the reality for the rest of us is that we need to give more people a chance to fight.  The prognosis numbers are not good for stomach cancer, and this disease is one of the worst things you can be diagnosed with.  There is very little in the way of promising, targeted research being done.  There is a lot more I want to say, and I will talk about the state of stomach cancer funding and research in another post soon.  But I want to end with a PSA for the 3^rd annual Stomach Cancer Symposium, which is happening tomorrow, April 20^th at 10AM.  This event is being put on by ‘Can’t Stomach Cancer’, and it is aimed at presenting information in a way that everyone can understand, including those of us without a medical degree.  There is a webcast available for free, and you can go here to register:  http://cantstomachcancer.org/portal/web/guest/upcoming-events1?EV=43.  If you're hanging around with nothing to do tomorrow, maybe you can check it out.