Cancer, Nutrition, Integrative Medicine, and a good website that ties it all together

When someone you love gets diagnosed with cancer, it can be a very helpless feeling.  You want to know what you can do to make a difference, and what kind of lifestyle changes will help give that person the best chance to survive.  You want to know what caused the cancer; maybe that will help you focus on certain areas.  For some types of cancer, the cause and effect may be obvious.  If you’re a long time smoker and get lung cancer, you know the reason.  If you’ve been a regular at the tanning booth for years and get skin cancer, you probably have an idea about what might have caused it.  But a lot of times, doctors will not be able to tell you what caused a cancer to grow.  That is often the case with stomach cancer. 

When Megan was diagnosed, the doctors weren’t very concerned with figuring out the root cause.  The focus was immediate chemotherapy and killing the tumors.  But I wanted to know.  And without any other information to go on, I correlated the location of her primary tumor (the junction between the stomach and esophagus) with what passed through that region – food. 

I can’t remember the exact timing, but I’m pretty sure it was the day that we got confirmation that it was stomach cancer that I printed out this list of food guidelines for the Gerson diet.  A few people mentioned the Gerson Therapy to us after finding it online or watching a documentary on it.  It’s an alternative, non-toxic approach to treating cancer.  In their words, “The Gerson Therapy is a natural treatment that activates the body’s extraordinary ability to heal itself through an organic, vegetarian diet, raw juices, coffee enemas and natural supplements.”  But it’s super-intense (yes, you read that correctly – coffee enemas), and although there are stories of people who have done well, I doubt that any oncologist would recommend it as a first-line therapy for someone with stage 4 cancer.  It’s probably more realistic for someone with very early stage cancer who is completely against chemotherapy.  I figured doing something like that would be a last-resort type of option for Meg. 

Their literature is also very clear that someone should not attempt to do the intense therapy while undergoing chemotherapy.  But, I thought that the list of prohibited foods was a good starting point for what we should not be eating.  So Megan and I went to Whole Foods that night with the list in our hand, and attempted to follow it while still going home with food that we could actually form into edible meals.  It wasn’t easy.  Even though we already ate a 99% vegetarian diet at home, the Gerson list ruled out so many of the things that we normally bought at the grocery store. That weekend, I cleaned out our refrigerator, throwing away anything that wasn’t organic.  Cutting down toxins and eating healthy was going to be the new plan.  I also went out with Meg’s mom and bought a Vitamix, so we could make protein shakes with leafy vegetables.  And I made a big pot of Gerson’s Hippocrates Soup, which was notable for being the first time I cooked with celery root, and also the first time I made soup with no added seasonings.  (It tasted exactly like you are imagining it might taste like.)

This was all well intentioned on my part, but it was not the right approach.

Megan could barely eat due to the pain she was in, and she was starting chemotherapy – a treatment that can wreak havoc on your appetite.  In a situation like that, the focus should really just be on getting calories and protein any way you can.  The oncologist at Georgetown told her that ice cream was a great thing to eat.  I was a little upset at that, but in retrospect he was right – it didn’t require chewing, and it provided some protein and calories.  She couldn’t eat anything those first few days after getting chemo, but slowly she started being able to eat and drink again.  The first goal was 800 calories a day, and it wasn’t easy, but Meg did her best to finish as much “Ensure” as she could.

After several weeks of chemo, Meg was finally back to a somewhat normal eating schedule and getting in a full load of calories.  I had been doing a lot of research, and was getting overwhelmed with all of the information available on the internet about what we should be focusing her diet on, and what natural supplements might be complementary to the primary chemo regimen that Meg was on.  I wanted some help from a professional who could help us decipher between what was real and what was a gimmick, and wanted to get some real guidance and motivation on what Megan should and should not be eating.  I found a nutritionist associated with the George Washington Center for Integrative Medicine.  I chose this nutritionist because she was associated with a University, and because she was a cancer survivor herself.  I also noticed that most of the big cancer hospitals had Integrative Medicine departments, so I thought this sounded like a good approach.  As Sloan-Kettering’s website says, “Integrative medicine uses evidenced-based complementary interventions to optimize the receipt of mainstream care by controlling the serious physical and emotional symptoms often experienced by patients before, during, and after therapy.”

We met with the nutritionist for 90 minutes, and she gave us a lot of information.  Here are some of my notes from the session:

Disclaimer: these are recommendations for someone with cancer - Megan specifically.  So they don’t all apply to healthy individuals.  And we needed to run everything by our oncologist, particularly the supplements.  These appointments are expensive and not usually covered by insurance, so I want to share the info.  But be sure to read the rest of this blog post before taking any advice presented here.

• Normally, she would put cancer survivors on a very strict diet.  Low sugar, no grains, no gluten, etc...  But she is not recommending that for Megan right now because it would eliminate too many food options.  Most important for Meg is keeping weight up and getting enough calories/protein. 
• She is recommending an anti-inflammatory, low-glycemic diet. 
• No fruit juices.  No Gatorade.  Look for sugar-free drinks.
• But ok to mix a little fruit juice in with water to make water easier to drink.
• No cakes/cookies/cupcakes
• Eat small meals/snacks throughout the day instead of large meals.
• Read labels – the protein and fiber should make up half of the carbohydrate total.
• Avoid artificial sweeteners.  But natural sweeteners like Stevia and Xylitol are ok.
• When it comes to organics, try to follow an 80/20 rule.  Impossible to go completely organic, but do organic for everything that you can.  If 80% is organic, then you are really limiting the pesticides.
• “Dirty dozen” attachment outlines which fruits and veggies need to be organic and which are ok to get conventional.
• Goal is 2000-2200 calories per day.
• Want to strive for 9-12 servings of fruits and veggies per day.  Mostly veggies (75%), and as many greens as possible.
• This is very hard to achieve, so a good option is to use “Green foods”, a powder supplement that can provide 6 or 8 servings of veggies in a single serving. 
• Berries are the best fruits but must be organic.
• Want to get a minimum of 65g of protein per day, shoot for 80g.
• Breakfast
• Eat cereals that are as plain as possible, without added sugar. 
• Regular cheerios instead of honey nut.
• Kashi lean is good
• Try almond or rice milk
• Canadian bacon or turkey bacon is ok
• Oatmeal is good
• When eating fruit, don’t eat it alone. Eat with a protein.
• Chipotle / Panera are ok.  They are GMO free.
• When making smoothies, make with 20g of protein per serving.
• Whey protein is best.  Get organic, preferably pasture raised.
• Use organic greek yogurt.  Would normally recommend non-fat, but normal yogurt is good for her now.
• Another option could be using coconut milk as the base.
• Things to avoid
• Flaxseed is not recommended as a primary source of omegas.  It is an inflammatory, and we want an anti-inflammatory diet. 
• Cut down on soy. No more than once a week.
• Clif bars – not low-glycemic. 
• Ice cream – ok as a snack once every three weeks.  But eat it with a protein.
• Supplements / vitamins
• Multivitamin with no Iron or Copper
• Vitamin D
• Omega 3
• Curcumin BCM95 (turmeric)
• Now Foods Pure AHCC (mushroom powder)

The main thing we took out of this was a reinforcement that we needed to focus on a low-glycemic diet.  We got the list of supplements approved by Megan’s oncologist, and started trying to work all of this stuff into our daily routine.  We did that for about two months, went for one follow-up appointment with the nutritionist, and everything seemed to be going pretty well.  That is, until we went for a second opinion at Sloan Kettering in November.  While we were there, the oncologist asked why Megan was taking such a long list of supplements.  He expressed a concern about overdoing it on anti-oxidants while undergoing chemotherapy, and asked if we would like to make an appointment with a nutritionist in their Integrative Medicine center.  We said sure, and we were able to have the appointment with their director of nutritional counseling, Donald Garrity, over the phone the next week.  He was a little more conservative than the first nutritionist, but I really liked what he had to say.  You could tell that he was associated with a leading research hospital, because he really tried to have a reason for each recommendation he made and often referred to nutritional trials and research.  Here are some of my notes from that conversation:

• He said if we were in his office we would see a 3-foot stack of papers on studies about the role of vitamins and supplements as they relate to cancer prevention.  At this point, opinions are split 50/50 as to whether or not they can really help prevent cancer.
• There is much less research on the role of supplements during active chemotherapy, maybe a 6 inch pile.  So no one can really tell you what the right answer is.  Because of that, he tends to be conservative about supplements during chemo.
• Supplements:
• Multi-vitamin is above and beyond what they would recommend.
• For multi-vitamin, during chemo stay at 100% DV.  The one she is on seems too high.
• Cancer cells absorb more vitamin C than healthy cells.  A subsequent study showed that it stabilized the cancer cell.
• Omega 3 – is a blood thinner.  Many benefits, but as long as your platelets are normal.
• Vitamin D – should stay in the middle of the range.  Get it checked, cut back if you hit 80.
• Curcumin – very promising. But acts like grapefruit juice.  Interacts with many medications.  Ok in-between chemo treatments.  But could inhibit the ability of the chemo to clear the body.
• AHCC – good, but still questions about interactions with chemo.  Try one of these, or alternate between them:
• Maitake Mushroom Extract D-Fraction: standard formula (not extra strength)
• From Grifron or Mushroom Wisdom
• Coriolus Versicolor
• Diet
• Avoid: white sugar, white flour, white fat
• Smaller meals
• Relaxed eating environments
• Favorite foods anytime of the day
• Eat extra calories when feeling well
• Soups, stews, casseroles (with added plant oils)
• Research
• Book: “Anti-cancer”
• Eugene Fine – sugar/cancer study.  Atkins diet slowed cancer growth in 50% of patients.
• Dr Andrew Weil - head of Integrative Med at Univ Arizona
• raised a fear that if you raise anti-oxidants during chemo, you may protect the cancer cells as well as healthy cells
• still hotly debated

Donald was very clear about something – he wasn’t trying to tell us that the other nutritionist was wrong.  In many areas, they both made very similar recommendations.  But when it came to supplements, he didn’t want to recommend anything that had the possibility of a negative impact during chemotherapy.  We agreed.  We wanted to make sure we were doing everything we could to maximize the effectiveness of the chemotherapy while minimizing the side effects.  If a study indicated that there was a chance this might not be the case for one of the supplements, we were going to play it safe.  So Megan cut back a bit on the multi-vitamin and vitamin D, stopped the curcumin, and replaced the AHCC with Maitake.  

2,000 words later, what’s the lesson here?  I’m not completely sure.  I think we did the right things, and I’d like to believe that Meg’s effort to eat healthy and cut most of the sugar out of her diet helped keep the cancer at bay for a little while, while keeping her strong enough to remain relatively active while undergoing chemo for 9 months.  But the reality is that we don’t know.  Unlike pharmaceuticals, there isn't big money in nutritional supplements and natural approaches to treatment.  Without large companies sponsoring these trials and lobbying the government to give them funding, they don’t get studied nearly enough.  You see so many articles about a fruit that can prevent cancer, or a natural approach to beating cancer.  But it’s usually anecdotal evidence at best, and hearsay at worst.

So that’s why I want to share the website that the nutritionist from Sloan pointed us to.  It’s one of the best sites I’ve found on the internet.

aboutherbs.com

That URL will redirect you to a segment of the Sloan-Kettering Integrative Medicine website.  On it, you can look up many herbs and supplements, and find (what seems to be) unbiased information about them.  There are two tabs for each “herb”.  The Healthcare Professional tab provides a summary of clinical studies that have been performed, and provides a list of references to actual research that has been conducted and published to the National Institute of Health.  The Consumer tab provides a “Bottom Line” written for the lay person, and addresses the purported uses and research evidence.  I’ve found this site to be a fantastic alternative to just looking things up on Wikipedia and hope I’m getting the right information.  The summaries are generally conservative, but the information is right there – you can read the studies and form your own opinions if you really want to.  If someone recommends that I start taking a new daily supplement in the future, I am definitely going to take the time to do some research on this site before putting it in my body.  In a world of unregulated supplement labels and unsubstantiated promises of “miracle cures,” I appreciate having someone pulling all of this information together.  It's not the answer, but it's a start.

What We Learned: The Importance of First-Line Treatment

In my April 19 post, I tried explaining some things about my understanding of stage 4 cancer.  I should have started with a disclaimer – I am not a medical professional, and have no medical background.  When you read this, please don’t think of it as any more than some advice an untrained friend might give you.  I’ll probably get a few things wrong along the way, so you shouldn’t follow anything I say without discussing with your doctor.  Plus, every situation can be different, and what I know is specifically focused on metastatic gastro-esophageal cancer.

Ok, with that out of the way, I want to talk about something we learned about cancer treatments.   When it has been decided that chemotherapy is the best course of action, doctors will recommend a particular regimen of one or more chemo drugs.  For some cancers and conditions, there is a general consensus about what that regimen should be.  For stomach cancer, there is no such agreement among oncologists.  There are a handful of different primary drugs, plus numerous additional drugs that can be combined with one of the primary drugs, resulting in dozens of options.  Most oncologists will follow the National Comprehensive Cancer Network (NCCN) Guidelines, and the 2012 guidelines for metastatic gastric cancer listed 31 chemo regimens approved for first-line therapy.  

First-line therapy essentially means that you have not received any chemotherapy for this specific condition before.  Once you start a particular chemo regimen, you can stay on it for weeks, months, or years (or however long it continues to work for you while your doctors believe there is a reason to continue treatment).  No matter how long you stay on the chemo, as long as the drugs don’t change, that is considered first-line treatment.  Once you alter the chemo drugs and start a different regimen, that is considered the second-line of therapy.  If you altered them again, that would be the third-line, and so on.  Why would you change regimens?  The main reasons would be if the drugs stop working (your tumors start growing back) or if your body can no longer handle the toxicity of a particular chemo.

For stomach cancer, in addition to the 31 approved first-line treatments, there is also the option of participating in a clinical trial.  In a nutshell, clinical trials exist to test the effectiveness of new drugs that have not yet been approved.  There are several different phases of trials, and some can be for drugs that have already shown some promising results.  So that is an option that needs to be considered in most cases.

A clinical trial can be an attractive option for stage 4 gastric cancer patients for a few reasons.  First, the prognosis on the existing chemos is not good enough.  Second, most of the trials use one of those existing chemos plus the trial drug, so the odds are that your worst case scenario on the trial is somewhat similar to your prognosis on a standard regimen.  The third reason is the toughest to accept, especially early on after a diagnosis.  But the fact is that because stomach cancer is a rarer type of cancer, there are not as many subjects available for inclusion in trials.   Participating in a trial helps forward the cause towards finding better treatments.  Once we learned these things about trials and gained a better understanding of the benefits of participating in a trial, we really wanted to get Megan into one.  But by that point she had already started her regimen of first-line treatment, and she wasn’t eligible for any current trials.  Let me explain.

When Meg first checked into the ER, aside from the abdominal pain, she was doing reasonably well (at least as well as you’d think someone with very advanced cancer could be doing).  I swear that the doctors in the hospital were shocked after reading her chart, then walking into the room and seeing Meg looking so healthy.  But during the next two weeks, her condition starting heading rapidly downhill.  The local oncologist wanted to get Meg started on the EOX treatment, but we were trying to obtain as many opinions as possible.  We made an appointment with Georgetown, we got a remote opinion from Massachusetts General thanks to a family friend, and I was calling Johns Hopkins every day (that’s a story for another post).  But Meg started getting so bad that we decided we just needed to get her started on something.   We got the second opinion at Georgetown, and they had a trial available for Ramucirumab.  In retrospect it probably would’ve been a good trial to do, as the preliminary results have since indicated that it provides a small benefit over the current standard of care.  We asked the doctor if we should do it.  We wanted him to say yes, or give us some sort of recommendation one way or another.  He didn’t.  He said we could do it if we wanted to.  That wasn’t very helpful.  So we decided to move forward with EOX, which is one of the more popular regimens, and the one that she could get started on the next day at our local hospital.  If we went to Sloan Kettering or Johns Hopkins they likely would have recommended a different treatment, albeit one with much more intense side effects (mDCF).  Or maybe they would’ve had a different trial available.  

But even with the benefit of hindsight, we still don’t know whether or not Meg would have responded as well to the trial or mDCF as she did to EOX.  Every patient is different.  I watched a presentation by Dr. Ajani from MD Anderson, one of the most respected gastric oncologists in the country, where he relayed how tough it is to predict which chemo will work best for each individual patient.  He said he could have two patients whose cancer presents exactly the same way, give them the same chemo, and could very well expect the results to differ significantly.  So we definitely didn’t have regrets about going forward with EOX.  To better illustrate this, here is a draft post that Megan wrote on January 6, but never got a chance to finish:

As I mentioned before, I consider myself lucky that I have responded so well to chemotherapy.   I am able to hang out with my family and friends, go out to dinner, run errands on my own, and even work out on occasion.  When I first started chemo, it didn't seem like any of this would be possible for a while.

I was so sick and in so much pain right before starting chemo.  It's amazing how fast I got so sick.  I had pain from the beginning, but I started to feel worse on July 4th - a week and half after I was first in the hospital.  My liver was barely functioning and fluid was collecting in my abdomen.  I didn't know this until July 7th when I ended up back in the ER because the pain was so bad.  I started chemo four days later, but I barely remember that day.   

I was in so much pain that my doctor had prescribed a fentanyl patch to try and make me comfortable.  I had been on Oxycontin twice a day with Oxycodone as needed in between, but it did little to help the pain.  I tried Dilaudid next, and that helped, but it is such a short acting drug that the pain came back in just a few hours.  Adam called a bunch of pharmacies until he finally found one with the fentanyl patch in stock.  I started with the patch on July 10th, the night before I was supposed to start chemo. 

The next morning, I couldn't get out of bed.  I was so out of it that Adam ripped the patch off me and practically had to carry me to chemo.  As I said, I don't remember much of that day, and I have faint memories of the two days after.   I was at the hospital every day.  The doctors were giving me fluids to hydrate me and were checking labs (mainly liver function tests).  My liver still wasn't functioning well, so my abdomen was getting bigger and bigger as it filled with fluid.   I didn't recognize myself in the mirror - my arms and face were skinny, but my abdomen, legs, and feet were so swollen that I couldn't wear any of my clothes.

Then, on the night of July 20th, my liver started to work again.  Overnight the swelling that had gathered in my abdomen, legs, and feet went away.   It was such a great feeling to know that my liver was functioning again, that the chemo seemed to be working, and that the pain the swelling had caused was gone.

I think that post conveys how Meg was feeling.  She really wasn’t in a condition to be weighing the pros and cons of treatment options.  And my April 19 post detailed what I was going through, and how those first few weeks were so overwhelming.  We made the best decision that we could and I don’t regret it.  But what I would recommend to others would be to call a foundation that can provide you with impartial advice.  If I had found out about Can’t Stomach Cancer or No Stomach for Cancer then, maybe they could’ve gotten a top doctor at Sloan or Hopkins or MD Anderson to review her case.  That’s part of what their mission is – to be a resource for patients currently fighting this disease.  There’s no way to know for sure whether it would’ve made a difference, but at least I would’ve had some additional assurance and peace of mind that we were doing the best we could.

Ok, so the point of this post is supposed to be to relay why the first-line treatment you choose for metastatic stomach cancer is so critical.   It’s because as soon as you get started with a particular line of chemotherapy, your options for additional treatments become much more limited.   To begin with, you are essentially married to your first-line treatment until it stops working.  Soon after Meg got started on EOX, I read about a trial for a drug called a CMET inhibitor that supposedly was promising.  I walked into our next appointment with our oncologist armed with my notes, thinking we would have a detailed discussion about whether it makes sense to switch to this new drug.  To my surprise, he managed to knock it down without even seeming like he considered it.  What I learned later is that the CMET trial was only for patients who had never received chemo before.  So Megan was ineligible.  If she had walked into the ER in September instead of June, she would have been put on the trial instead of EOX (assuming she passed the tests for it).   But at that point I didn’t fully understand that, and I was frustrated with our oncologist, figuring we had to go to a bigger hospital where they would be more aggressive.

But then in November we went to Sloan and Georgetown for more opinions, and they said the same thing.  Actually, at Sloan I never even made it down to the CMET section of my notes.  The oncologist there spent most of our consultation telling us how Meg was having a tremendous response to EOX and that it would be “unethical” for him to recommend major changes, as there was no guarantee that something else would work any better.  In our mind the problem was that even though the scan she had done the previous week showed smaller tumors in her liver than two months earlier, the tumors were still there and the tumor markers had started moving in the wrong direction.  We didn’t want to just “keep the tumors under control.”  We wanted to be really aggressive and try to hit the tumors with something else.  But to the oncologists, even if the tumors are still there, as long as they aren’t getting bigger and the patient can handle the treatment, that’s considered a success.  We talked to four different oncologists (including one at Hopkins in January) and none of them would put her on different drugs until the current ones stopped working.  Unfortunately, this cancer is so aggressive that once a treatment stops working it is often too late.  For Megan, when the drugs stopped working it meant that her liver condition started spiraling out of control, and at that point she didn’t qualify for any trials because her liver wasn't healthy enough anymore (plus the limiting factor that she had already had a first-line treatment).

So, again, my point is that the first-line treatment for an aggressive, advanced cancer is something that should not be rushed into without getting at least one second opinion from a comprehensive cancer center.  But it can be very tough to figure out how to make decisions those first few days after getting the diagnosis.  So instead of spending all your time on the internet trying to become an expert on the different treatment options, spend your time finding a foundation with a good patient education program.  They can put you in touch with the right people and make sure you are asking the right questions. 

Why So Quiet?

Before I decided to start writing these posts, I sat down and compiled a list of blog ideas, to make sure I had enough to write about.  I listed out 30 potential entries.  Tonight’s post was not one of them.  I’m hesitant to write this, because I’m afraid people might take it the wrong way.  But I’ve felt better after writing some of the other posts recently, so I’ll throw this one out there.

I need to take more time for myself.  Writing this blog has been very therapeutic for me, but it’s now been 9 days since my last post.  That’s because I’ve been home alone before 9:00PM only one time in the past 12 days.   I’ve been out of town each of the past two weekends for family stuff, and I've tried keeping other plans that I’ve made.  All of those meetups have been good company and time well spent.  But last week was the first time I worked a full 40 hours since I went back to work, and I realized halfway through that I might be burning myself out.   It all came to a head on Friday night, and I had a bit of a breakdown.  So I’ve decided that I’m going to cancel all plans for this week, and take a few days to decompress.  My house is a mess, I haven’t done any writing or guitar playing, and I’m making very little progress on the paperwork items that still need to be taken care of (and are constantly weighing there in the back of my mind).  If I don’t schedule time for my personal mental health, I feel like I won’t continue to make the small steps of progress that I need to be making.

I’m worried that by writing this, people are going to stop emailing me, and stop trying to make plans with me.  Please don’t do that.  I’m still going to need you guys to be here for me in June and July, so if I cancel plans, let’s try again in a few weeks.  There are a lot of emails and facebook messages sitting in my inbox that I haven’t responded to yet.  I’m not used to getting this amount of correspondence, and I’m trying to keep up.  But it’s tough to dig into that well so often.  And it’s actually tougher the more meaningful the message is, or if it's about Megan.  I still want to respond to people who sent me messages a month ago, people that I haven’t spoken to in years.  I’ve read everything that has been sent to me, and I enjoy hearing from everyone.  So keep writing, but please understand that if you don’t hear back, it’s not personal.  It might take me a month or two, or more - I’m not sure.  Last week I wrote that I need to do a better job of letting people know how I feel while I have the chance.  But that’s not always easy, and I definitely can’t do it all at one time.  So I’m working on getting better at that. 

Before leaving work on Friday (my one night with no plans), I went back through some old email conversations I had with Meg.  I’m not sure I should do that at work again.  When I read her writing, I hear her voice in my head, and it can be too much to handle.  I started driving home and couldn't keep it together, so I decided to go to the cemetery.  I sat at Meg’s plot for a while, and then went for a walk.  On a monument not far away, I saw a poem and read it.  It gave me a lot of comfort, and helped me get myself together, so I wrote it down and thought I would share it here.

For those I love, for those who love me

When I am gone, release me, and let me go, 


I have so many things to see and do.

You mustn't tie yourself to me with tears, 


Be Happy that we had so many years.

I gave you my Love. You can only guess, 


How much you gave me in Happiness.

I thank you for the Love you have shown, 


But now it's time I traveled on alone.

So grieve awhile for me, if grieve you must.


Then let grief be comforted by Trust.


It's only for a short time that we must part, 


So Bless the Memories that lie within your Heart.


I won't be far away, for life goes on, 


So if you need me, Call and I will come.


Though you can't see me or touch me... I'll be near, 


With all of my Love around you soft and clear.

And when this way you must come, 


I'll greet you with a smile and a 'Welcome Home.'

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.