My Stomach Cancer Survivor Confessions

November is Stomach Cancer Awareness month, so I thought I should write something about how I still deal with the effects--- 7 years later.

 So, friends, here, on this blog, I am telling all of you for the first time (because I have recently been reflecting on it and only now owning up to this- I haven't even discussed with my therapist but I will)....I am almost certain I have a stomach cancer induced eating disorder. This will be VERY LONG so bear with me, and if you read it, I appreciate you! I have been working on this post for DAYS and I don't know how it's going to be perceived, so I am making myself very vulnerable to you right now.

I can't really write about my self-diagnosed eating disorder without explaining again everything I endured when I was recovering from surgery. I know many of you remember my trials and tribulations of eating and all I went through, but many don't know because I have recently met you, so here is my story. I think it will MAYBE help you understand how eating became immensely stressful, and the stress has NOT gone away to this day:

Diagnosis:
My cancer was found on accident. I was dealing with immense pain from a NF tumor in my lower abdomen (not known then because it was too small at the time, but my description of pain prompted all sorts of tests. It was found early (I was 26 years old)- Stage T1a- in my upper stomach right before my GE junction. The removal of the tumor was actually via endoscopic ultrasound in July 2009. In April 2009, I had an upper GI, which lead the the discovery of the polyp I had an Endoscopy/Colonoscopy that May to make sure I didn't have more, and to look more closely at the polyp.. Since I have innumerable NF tumors inside of my body, the polyp looking thing  they removed (as my GI said, it was like plucking a grape off the stem) was thought to be a harmless fibroma, but they wanted to remove it anyway. The endoscopic ultrasound was in July.  I had been having significant GERD and he thought MAYYYBE that would help. BUT IT WAS CANCER. Adendocarcinoma with signet ring cell features- poorly differentiated. The signet ring cell part was the most dangerous part, as it's one of the most aggressive cancers. And that was in my body! 26 years old! I thank NF to this day for saving my life, even though I still suffer from immense pain. I would not be here today if I hadn't been in pain from that tumor, though.

The Surgery:
Since the cancer diagnosis was such a shock (to my doctors especially), my surgeon wanted to definitely do some sort of stomach removal- full open surgery, not laparoscopic. That way they could make SURE the cancer was contained in that polyp or they could see if it had spread. You don't want to play around with cancer cells! In August 2009, I had the surgery. Thankfully, once they were in, there was no visible cancer spread, so my surgery involved the removal of the bottom 10% of my esophagus and the top 15% of my somach (including the GE junction)-- instead of doing the total gastrectomy.  My esophagus and stomach were rejoined together via a niessen fundiplication. Similar to a gastric bypass, but I still have most of my stomach. This was supposed to be a good thing, but for me, it was just the beginning of a recovery nightmare. I mean, I didn't suffer from cancer or chemo, and I wasn't writhing in pain, but....my body didn't let me eat food, as I'll explain below, so I was quite literally starving for MONTHS.

For MANY people, even with a full gastrectomy, patients can eat liquids or even soft solids before leaving the hospital. IT WAS NOT THE CASE FOR ME. Because I had part of my esophagus removed, I could swallow NOTHING, not even water, for my ENTIRE hospital stay and for a few days after I got home (some days I was so desperate to taste food again, I would put it in my mouth, savor it, sometimes chew it, and spit it out). I endured a little over two weeks of only swabbing my mouth with ice chips. We had to make sure my esophagus was totally healed before eating again (an esophageal tear would be the worst thing that could happen in my recovery).

The Recovery: 
When I left the hospital, I was allowed to SLOWLY introduce liquids and sort foods. Otherwise, for all of my hospital stay and for a few weeks after discharge,  I had a feeding tube but to make a long story short, my body rejected it and I no longer had the tube to back up my calorie intake. Part of that is on me, because I refused to get it put back (it was extremely painful and uncomfortable for me). I also needed to TRY to eat and not get myself complacent with tube feeds. It is part of recovery.

Eating food was never easy from the get go. My esophageal motility seemed to be mostly paralyzed. The rest of my upper stomach was wrapped around my esophagus, and it was done tightly so that acid refux would stay down. We all have a sphincter that keeps acid from infiltrating your esophagus, but with this gone, the surgeon wanted to make sure my esophagus wouldn't be destroyed from GERD, so he wrapped my stomach and esophagus together rather tightly.

But between the trauma the esophagus endured from the surgery,  and the tightness of the surgical suture, its motility was compromised. To make things worse for me, while the stomach was wrapped so tightly to keep acids down, it was impossible for food to go down into my stomach quick enough. Result- very little food, if ANY, made it to my stomach. It all got stuck in my esophagus. And no matter how well I chewed or how little I would swallow, I would have to forcefully throw it up. I became a forced bulimic. sometimes soup wouldn't even go down. I lost 20 pounds. Finally, once I got to 80 pounds, I called my surgeon desperate for help and he immediately took action (dilating the esophagus so that I could get food in, but thus began my issues with GERD, which is why he didn't do it immediately- we hoped it would sort out on its own).

Learned Starvation:
Just like one develops tolerance to pain, I developed a tolerance to starving.  I literally was starving during these horrible few months of recovery but I couldn't do anything about it. Had I lost more weight when I got to the 80 pound mark, my surgeon would have forced me to get the feeding tube put back in place but I was able to maintain my weight, despite the fight my body had with swallowing. BUT with everything that I had to deal with,  believe it or not, the feeling of starvation was better than how I felt after food was swallowed.  Sometime I got sick from dumping and nausea. Or food would just get stuck and I would have to painfully throw it up. I don't know why I never divulged this information to any of my doctors. I just went into avoidance mode.

Dumping Syndrome
 If by chance food WAS successful going down,  and even though I followed my nutritionist's advice on portion size, I would get a severe case of dumping. The carbs (normal carbs, not from sweet food, but from food like pizza crusts) gave me crazy sugar highs. A few minutes after eating, I would get hot flashes and become dizzy. Sometimes I would be so nauseous I would dry heave and I would vomit excess saliva and acid reflux. Sometimes all of this (the dumping, the dizziness, the hot flashes, the dry heaves/saliva vomiting) would happen all at once- often in public or at WORK.

Swallowing nightmares
I so desperately wanted to eat. I was hungry. Every day, I TRIED to eat, no matter the volume, the texture, MOST FOOD I swallowed. would move down, so I would have no choice but to throw it up, hoping to make it to the bathroom in time for THAT too (the most severe cases, the undigested food would come up on it's own with a simple cough).



Eating away from home nightmares
To give you even more of a picture of why eating in public sucked in public sucked, I had to endure two scenarios:
1- Successfully eating and having to run to the bathroom, while dry heaving and salivating, and barely making it to the toilet for dumping episodes (this happened to me right before I took an exam for grad school admission)....and hoping a toilet was even available!!!!

2- Swallowing and food NOT MOVING. I would have to run to the bathroom to throw it up. My face was in SO many public toilet bowls, painfully forcing food out (while my surgical area was still sore!), and chunks of undigested food hitting the toilet bowl, water splashing on my face, and saliva and acid running down my face onto my clothes....what else can I say?

Even when this would happen at home, it was still miserable. This was my EVERY DAY life post surgery. The work toilet, the restaurant toilet, someone else's toilet, my toilet... often, i would have to leave the table while everyone else got to enjoy their food and conversation and I would be in front of a toilet trying to get food down so I wouldn't have to throw it up or working hard to just force it out. Even if it was a clean, personal toilet (friend's house, my house)...still a toilet. And public toilets are the worst, even at a clean restaurant. It was traumatizing.

Eating Stress In 2009 And How It Still Affects Me Now:

All this time spent doubled over a toilet was the start of my not eating lunch/taking a lunch break at work, or going out after work to eat with friends. The satisfaction of getting calories was completely trampled over how I felt after I ate or the fear of being at a toilet again- face down or butt down, whatever. So I didn't eat if I could help it, and if I did eat, it was JUST dinner, and at HOME (unless I was invited to celebrate a birthday or something). I was SO VERY hungry, but I learned to deal with it. Of course things got better, and I gained my weight back, but it wasn't without a fight.

Thanks to all I endured,  my brain/physiological need to eat and my physical appetite are NOT in sync to this day. In other words, even now, in 2016, I don't often feel hungry even though I probably am EXTREMELY hungry because I got so used to fighting the urge to eat due to fear of things going wrong in public. I snack often, but unless I force myself out of my office to eat a REAL meal, I can usually go all week ONLY eating dinner as my one full meal.

So while most people just have the luxury of chewing and swallowing (unless you also have an eating disorder- trying not to make sweeping generalizations of how people feel when they eat), I have the burden of worrying about everything I just wrote above. It's ingrained in me. Yes, my intake is much better, and I CAN physically eat mostly anything, though food still does get stuck (and it's happening more often...and sometimes I still DO need to throw it up), so I'm no longer wasting away, but any time I put food in my mouth,  I still have all of what I wrote above to think about.  I get endoscopies every year (I need to schedule THIS year's but my surgeon changed hospitals so it has complicated tings), and I have been in the clear, but since I have been dealing with more STUCK feelings, I am hoping I'm still in the clear.... (one year the ending of my esophagus and opening of my stomach drifted apart which caused eating discomfort, but it resolved itself. This may be what is going on now).

Anyway, even now, when food gets stuck, it can take up to 10 minutes to resolve itself, so then people finish eating before I can even get a few bites down. So that's embarrassing. AND STRESSFUL. But If I get invited out, I don't want to isolate myself like I used to. Sometimes I'm lucky, others I'm not.

To reiterate:
Eating in public is still stressful (but if you are reading this, please don't disinclude me- I'm just writing about my continued recovery so people understand my eating slowness). Going out to eat with people I don't know that well is stressful. I can't physically eat my entire meal (unless I haven't eaten at least one substantial meal in a few days, and yes, I can go more than one day just eating small snacks here and there), so I am always paranoid of people thinking i don't like what I am eating. Eating at home is more comfortable, but sometimes I still have stress about eating everything on my plate. Portion stress is very hard for john to understand but he's been better about sizing dinner and side dishes so that makes home eating less stressful.

Does anything I said make sense? I have internalized this for SO long, the fears and the stress is not something I really talk about out loud. It's really hard to type out the experience of how eating became difficult for me.....and the trauma that makes it STILL difficult for me...

Every once in a while, I do have the luxury of eating a LARGE meal in its entirety (either John made or an entire restaurant portion....I can usually eat a portion-controlled John meal with no isues). Usually, my large appetite only happens if I haven't really eaten anything substantial for a while - sometimes all day, sometimes for more than one day in a row. But it doesn't happen often. Many times when it happens, it can satisfy my hunger for more than a day! so I resort back to just snacking and only eating dinner.

And this is just one part of it! The stress of food going down my esophagus is part 1.

Part two is weight gain.

Gaining Weight Struggles (Physically and Psychologically):

Despite everything, it's very hard for me to gain/maintain weight. Even if I eat 3 meals a day, I don't keep the pounds. Sure many of you are rolling your eyes, wishing you can be me. But that pisses me off. I literally suffer with this.  Any time I talk about my weight, it is impossible to explain because I know I have to deal with people who do not like their weight or bodies to spew thing at me like "you can have my weight!"-- I am sorry, but I hate when people say this to me... but anyway...and maybe people will think I'm stupid for thinking this way, but despite the fact I want to be a normal weight and maintain it, AT THE SAME TIME, it's a legitimate fear to ME.  (I will say though, as an aside, when I was pregnant, and I weighed over 110 pounds, it was EXCITING! I got to 116, got sick, and lost a lot of that weight [I devleoped a cough and each time i coughed, i coughed up food, being since my stomach as pushed so high up]).

Back to my weight gain fear: It's not beause I'm afraid of being "fat". It's more of a financial fear of buying clothes I can't wear/wasting money. When my initial weight loss occurred, John and I were at our poorest. Buying clothes is fun and dandy and all...but we took a financial hit. I don't know how we were able to pay rent, but anyway. Even though we are better off now, we are still on a budget and the fears are still with me. And sometimes I worry, with how small my clothes are now, that eating too much will cause me to not fit in my clothes, and having to move up in size. I fear it's a waste of money. I also lose weight easily, so what If I buy newer, bigger clothes and can't wear them again? What I will I do with those bigger clothes? I know it's stupid, but this is a real fear.  So I don't know if I REALLY CAN'T gain weight without really working at it or if deep down I am keeping myself the way I am because I don't want to have to endure the cost of buying clothes that I may not fit in for long to begin with. 

Then again, like I said above...is this really the case...do I really lose weight easily or is it psychological? Is it both physical and psychological?

For example, I could do well, eat multiple meals a day, and be at a good weight, and then suddenly, something will happen with my appetite and in JUST A FEW DAYS (after working WEEKS , maybe MONTHS to gain weight), I lose 5 pounds.  The weight loss either happens if I get sick, or if I have a particularly bad week with food moving down my esophagus, so I stop eating (because it hurts and I don't want to deal with the stress). Or if something traumatic happens (a death), and I lose my appetite. Or if work is stressful, and I lose my appetite. Appetite loss is VERY common for me. I know that is more psychological. But no matter what I do, I can't force myself to eat. If I do, I don't enjoy the food. So most times, I drink tea with a lot of cream, or get a latte or mocha and snack on something easy to digest, like chips, to at least get some calories in during bad appetite weeks.

So with the weight thing, I really don't know if it's actually physical, if it's psychological, or if it's both.  But I will say I never dealt with this, thought about my weight, skipped meals (except for breakfast- I was never a breakfast person), was afraid to gain weight, easily lost weight...none of this was an issue until I had to endure with my surgery recovery. And now I'm all sorts of messed up, stressed out, hungry but can't eat, not hungry for no reason at all, or hungry and can eat a lot but then satisfy my hunger for days, or eat well but it's short lived for whatever reason...and it's exhausting.

And I don't know what to do.

That's my confession. I beg you to not tell me I can have your extra weight or your working esophagus. This is not helpful. I would like to not have the psychological stress and trauma of eating and not worrying about food getting stuck with every damn meal I have. I would like to not have to throw up food. I would like to know I can gain weight healthily. I just want my normal eating life again.