Cancer Hurts

In some people, cancer causes "loss of appetite."  Only it's not really a mere loss of appetite; there is no good medical description for what really happens.  I know because I'm experiencing it.

And what happens is that family members, not knowing what else to do, nag us to eat.

Cancer patients aren't alone in this "loss of appetite."  Liver disease, HIV, heart failure, kidney disease and others can cause it, either temporarily or permanently.  But since I write about cancer,that it is very common in people with advanced cancer, especially those of us who have it in our GI area.  No, not everybody has it, but plenty do.  There is a formal name for this: "anorexia-cachexia syndrome."   It's why you picture a dying cancer patient as wraith-like; like Steve Jobs.  Let's just say that at a certain point in the disease, most of us are not really worried about keeping our figures.

I know that it is very disturbing for family to watch their loved one wither away, especially when you think that it's because they don't eat.  You are puzzled when they turn down food or only eat a few bites and won't can't do anymore.  You may even get angry. "Don't you know you have to eat?" you say, exasperated.   You may believe that they are being ornery, or don't realize how little their food intake is, or are just not hungry and should eat anyway. 

"If they will just eat," you think "maybe they could get better." 

So you nag.  You believe that it is within the sick person's control - mind over matter.  Force it down.

Just eat, dammit!

First, you must understand that while they call it is a "loss of appetite," it is much bigger than that. You may be able to eat when you aren't hungry - we can't.  This problem of being unable to eat is not a matter of will-power, nor is it in our control.  It is a symptom, a complication of our disease, same as a runny nose caused by a cold.  Pleading with us to eat is like begging somebody with a cold to stop their nose from running.  The patient wants it to stop too - but it cannot happen, they have no control.  They aren't being stubborn or willful because they cannot command their body to stop making mucus. They literally, physically, cannot.

This is the same thing.  

While the reasons for this syndrome are not well-understood, scientists do know that it is a metabolic problem.  There is even a name for it - cancer anorexia cachexia.  I'm not going to be able to explain this well, but you can search for it if interested.  Very simply, tumors release destructive proteins which tell cells to produce an inflammatory reaction which can cause a loss of appetite.These proteins can also cause muscle atrophy and can be the cause of altered taste changes,  among many other problems. It's a whole metabolic cascade response caused by end-stage cancer:

"..anorexia describes loss of appetite and/or an aversion to food. The term “cachexia” refers to a loss of body mass, including lean body mass and fat, in the setting of a disease state, in this case cancer. - 
See more at: http://www.cancernetwork.com/cancer-management/anorexia-and-cachexia#sthash.Hw0aa190.dpuf "

"Cancer cachexia is a multifactorial syndrome defined by an ongoing loss of skeletal muscle mass (with or without loss of fat mass) that cannot be fully reversed by conventional nutritional support and leads to progressive functional impairment”. 

[Fearon, Lancet Oncol 2011]"

It is physical, and it isn't a problem somebody can mentally talk themselves out of. 

Not even me. 

I do have a loss of appetite although that phrase does not encompass all that I experience. Appetite isn't the same as hunger.  I wouldn't say I never feel hungry because there are times when I am hungry, although not the way I used to be.  People think I should smoke weed, or get some prescription drug that will increase my appetite, but being hungry is really not the problem; it's what happens after I'm hungry that is the problem. 

Eating is the problem. 

I have no desire for food, even if I get hungry.  In fact, food is repulsive to me.  Just the idea of eating makes me uncomfortable.  I used to be a foodie, and cooking was a hobby.  I enjoyed watching TV shows about food and trying new recipes. Now, food is revolting. Even when I do feel hungry, the idea of eating grosses me out.  As my husband shared, he does the cooking now, and he frequently asks me what I want to eat, because of course, he wants me to like what he cooks.  But the answer is nothing!  I don't want to eat, it is unpleasant to even think about it. Angering even.  Food is no longer desirable.  It's an intense annoyance.

Hurting:  I feel very full, very fast.   I eat three grapes (or whoppers) and I feel like I ate a Thanksgiving meal.  Fruit hurts for a lesser amount of time, which is why I like it.  If I eat a regular meal, say a piece of chicken, potatoes and vegetable, it's like I ate a full Thanksgiving meal - twice - and added four pieces of pie.  My stomach hurts from the cancer anyway and adding this fullness to it becomes overwhelming.   Feeling full has always been uncomfortable for me. But now being full is more than uncomfortable.  It's pain, real pain, true pain, not happy "Oh I overate, groan pain."   I feel like I've been punched in the stomach and my meal consisted of knives stabbing me from the inside.  It feels like my stomach is full of rocks, and I'm weighed down, and each movement causes pain.  And it can take 8-10 hours to digest and go away.

Because it's hard to stand for a long time, and my feelings about food have turned unpleasant, my husband does all the cooking.  I do eat a meal at dinner.  Not a big meal, but a meal.  My husband needs to eat and by dinnertime, that's when I also try to eat. But when my body says to stop eating, I have to or I get sick and feel pain.  Not nauseated sick, just painful, repellent sick. I'll wretch if I overdo it. I'd be shocked if I ate 500 calories a day.

And then, after dinner, the pain comes and can hurt for hours.  Still, I get as much in as I can.  That IS forcing myself because my desire and inclination is to never eat again.  But I know it's not much.  My body simply rejects food and it's beyond my control.  

I am trying to describe this for those of you who are living or caring for somebody with end stage cancer (or other disease)  and who is starting to experience this problem.   I want you to understand that it isn't their fault.  And it isn't YOUR fault.  You can't make somebody eat, and here is what you must understand -  they can't make themselves eat. 

It's distressing for all involved. I know it is hard for you to watch. You want so badly for us to get healthy and survive longer and we know that. Remember, it is hard for us too.  We want all that too, and have the added burden of knowing our loved ones don't understand, and think we aren't trying hard enough. 

No cancer patient should feel upset at themselves or feel like they are disappointing others for having a disease.  And this is a symptom of a disease.

When you nag us about eating, you make us know we are hurting you.  We feel guilty that we can't do something that seems so easy.  Many cancer patients do not even understand this is part of the disease process and not in our control, so we are upset at ourselves, and think we are doing cancer wrong.

Mysteries.

If you are a newbie to disease reading this, and if you think that there is clarity in medicine, I smile at your innocence, charmed like a new mother seeing the world through her child's eyes.   In medicine, there are often more questions than answers.  No matter how sophisticated the machine or brilliant the doctor, sometimes, the unknown reigns supreme.

As an example, even with all the cancer in my body, nobody can figure out why I've been in so much pain or can't eat. Sometimes, there are no obvious answers, and sometimes, people in medicine can't see the forest for the trees. 

You know what I think? Cancer hurts.

Cancer effing hurts, even if it's not technically impinging on something or interfering with mechanics. It just does.

I think about how small we are in the grand scheme of things, and what makes us cling to life so desperately - and we all do, we all want life so much.

What I have mostly thought about is my family. I think about my loved ones.

In history, we are nobody. Only a few of us will have names that live past our immediate families: Steve Jobs, Bill Gates, Mark Cuban. The rest of us, we'll be forgotten in the dust of time. And that's okay. Millions of people have come before us, each as individual as you or I. Each has had their life, their suffering, their joy, and their deaths and each is now gone. Billions of people, known only for 3 generations if they are lucky.

All we can do is try to do a little good while we are here; nudge the world in a way that we think it should be nudged. That can be done by something as simple as raising a decent human being. You never know if that person will truly change the word, be a President or Inventor, or will give birth to one. Not all humans must be great. Ultimately, what gives most of us happiness, what gives us the ability to continue on in the face of adversity, what gives us purpose, is being with the ones we love. Why is that so important? I don't know why, I only know it's the biggest part of humanity.

My fortune was not difficult to tell.  In cancer, the crystal ball is not opaque.  What happened to me is what happens to all people with metastatic cancer. It grows. 

All we want as we are scanned and treated is to live long enough for the next milestone: to see a birthday, a graduation, wedding, or a grandchild. Our lives are like fireflies in an endless sky, blinking out quickly. But we have value while we are here. Without us, the person who may change the world would not come about.

We are worth money, and research dollars, and hope.

Love you all and truly mean it and God loves you too,

Shanna xoxoxo

P.S. Two more days until I am the big 36!

Official prayer warrior page for my fight against lung cancer: facebook.com/hope4shanna

Official blog Facebook page: https://www.facebook.com/shannabananahealthandfitness