Loss of Appetite in Cancer Patients - Part Two

So, your loved one has advanced cancer, is not eating, and you want to help.

First, please read part one.  You must understand that what you think is a loss of appetite is more than that - it's a true physical inability to eat.  It's a symptom and a complication of disease and not something we control with willpower.  No matter how much you beg and cajole, eating regular, normal meals is a medical impossibility and will only cause more stress.  You might as well be begging somebody with a broken femur to get up and run a marathon.  

I also want to make clear that I am not talking about the common loss of appetite that happens in an early stage cancer patient due to chemo, surgery, or as a medication side effect.  Depression and some medications can also cause a lack of appetite in early stage cancer patients, and so appropriate diagnosis and medications may help.  Any lack of appetite should be discussed with a doctor.

I am talking about something very different.  I am talking about what happens to an end-stage, terminal cancer patient - anorexia-cachexia.   This is a wasting condition where muscle is lost, metabolism is revved up yet food desire disappears, and it happens because of their disease, not because of treatment.  Those who have cancer anorexia-cachexia experience it even when we are off treatment.  Mine started before I started the new chemo, when the cancer (unbeknownst to me) began spreading again but when I was on the same therapy I'd been on for 2 years.

So what can you, as a caretaker, do to help?  I will tell you what has worked for my home, and you can adapt this for yourself.

Communication:  Don't ask the patient to make food decisions.

I do not want to be asked what I feel like eating, because the answer is nothing.  My husband used to say "What do you want for breakfast?" or "Do you want eggs or pancakes?" "Do you want soup for dinner?"    I truly cannot answer that question because I don't want anything.  And not only do I not want it - it makes me angry to think about. Angry, frustrated, annoyed....You might as well ask me, "Do you want to be stabbed in the lung or the liver?"  Neither!

I truly cannot make food decisions at this point.  I told my husband that he is not allowed to talk to me about food. Bring me food or don't, cook or don't,  but leave me out of it.   I won't acknowledge that question and he has stopped.   All decisions about food are his.  I think I eat a tiny bit more since he stopped asking me and just started giving it to me.

Shop: Put yourself in the role of decision maker.

For husbands, or at least for mine, this may be something they aren't used to.  I shopped and I cooked. Now I am beyond shopping for food.  I used to go to Whole Foods and buy all the things I'd love in the hopes I could eat, yet it would rot in the fridge.  Now, I don't even want to see it, my stomach roils just thinking about food.  So, take it upon yourself to shop for your loved one.  Try to keep the things you know she'll eat on hand, and keep the things you hope she'll eat around too.   Don't worry so much about nutrition as much as intake. If all I can eat is cake or 3 musketeers mini-bars, well, make sure I have cake or candy in the house.  Don't substitute what you believe is healthy - it's not going to be healthy if we can't tolerate eating it.   

Take Control of Food for your Loved One:  Bring foods every few hours.

While I won't make a food decision, I also don't want to be on my own with food intake because frankly, I wouldn't eat. At all.  I know mentally I have to eat but cannot tolerate the thought or the pain that comes later, and most food sounds disgusting now -  so I need help.

Despite the fact that everything but candy sounds awful, if something is put in front of me at dinner, I sometimes eat it. 

I have no appetite and won't ask for it, but if a cup of hot soup, or a cup of tea and cookie is placed in front of me on a cold day, I might sip it.  Maybe just a sip ... but it's something. If a tiny plate of fruit and cheese is placed in front of me at lunch, I might nibble at it. (Tiny being a few grapes and a tablespoon of cheese). I certainly won't get it myself and if you ask me if I want it, the answer is an unequivocal no. If it magically appears without questions or expectations,  maybe I'd try. Maybe I wouldn't.  But it is better than talking about it, which I am certain to not respond to.

Size Counts. Food hurts, we don't want to see it.

Don't put a big bowl or plate of anything in front of me.  It hurts to even look at it.  Keep it small.   Light and airy.  I don't know why looking at a big plate of food bothers me but it does.

Notice taste changes.  Cachexia can cause things to taste weird.  Keep our new likes in mind.

If I can't stand garlic anymore, don't put it in anything we share, even if you like it and even if you know I used to love it.  Now, it's different.   I can no longer tolerate onions, garlic, or any kind of intense flavor but used to put them in everything.  I still like salty food. I like popcorn with no butter. And sugar is something I never cared about but now like.

Taste changes can make things we enjoyed formerly undesirable.  So pay attention and make sure those things we now like are on hand.

Choices:  Provide tasty foods.

My husband is a truly terrible cook. (Sorry hon.)   I finally tried a food subscription service, where meals are delivered with recipes.  It's expensive and I hate that I have to pay for that with a kid in college - but that said, I eat a bit of it. There are several of these services. They give you choices of meals weekly and deliver them to your home.   The right amounts are sent with recipes, and my husband just has to put the meals together.  They are creative and flavorful, and I like them.  That doesn't mean I can eat a full meal, but when I taste something that is good, I can usually eat a few bites.  When it was him cooking on his own, I had no incentive at all to eat.   Taste still counts, even if we like fewer and fewer things.

Diet: The time to worry about nutrition is over.

Nutrition is important when you are an early stage cancer patient regaining your health.  Everyone should eat well.  But when we are this sick, and hardly able to eat, getting calories in is more important than a balanced diet.  My oncologist says any calorie is a good one.  Your ideas about perfect nutrition have to go out the window at this late stage.  That doesn't mean you shouldn't give a cancer patient nutritious foods, but only if they will eat it.  Give little balanced nutritious meals through the day and see what the patient eats. If it's pretzels and grapes, that is better than nothing.

Nagging:   Don't.

We know.  We really do.   If you get the urge to nag, do something instead.  Put small amounts of food in front of a cancer patient without asking a couple times a day - and take it away whether it's eaten or not, and say nothing.  Ignore your feelings of upset, time/money wasted or rejection if it isn't eaten.  What's the ultimate goal?  Your feelings, or helping a cancer patient with a symptom?

Know you tried. You showed your love.  It's better than nagging. If you want to help, this is what help looks like.  If you don't, that is fine, understandable really - nobody really wants to be responsible for another adult's food intake.  Just don't put it back on us, which is what nagging does.

Remember, you can't force us to eat.  You can't talk us into it.  All you can do is tempt us and make it easier.  If we can't do it, you did your best. Not only did you try to help us, you did it leaving our dignity intact.  You can remember that with pride.

Understanding.  Truly learn this isn't within our control.

Imagine, if you were forced to eat something disgusting and got punched in the stomach with every bite which then caused hours of pain -  eventually you wouldn't want to eat either, even if you had an appetite.  When you have no desire for food and a food revulsion, when your body doesn't want food any more and with each bite there is real pain - it doesn't take long to learn to stop.  Try to understand how hard it is for us.  Try to understand that it is out of our control, and that it is our bodies doing this and not our minds. 

Bottom line:  If one of the symptoms of having a disease is a runny nose, hand us a tissue, don't try to convince us to make our nose stop running.

Do remember, it's nobody's fault.  You can't talk us out of pain, you can only bring us a pill. You can't make us not tired, you can only let us rest.  You also can't make us able to eat, you can only provide foods and leave the rest to us.

We want comfort, love and acceptance, especially at the end, not fights about food.

More resources:

Why do cancer patients lose weight rapidly

American Cancer Society (halfway down the page)
(By the way, while this says it happens in the last 3 months of life.  Like everything with cancer, there is a continuum.  I've already experienced it for longer than 3 months. Most people do stop eating as part of the dying process no matter what disease they have, and it is a sign that time is short. But others can go this way for a while, my mother did for about 2 years (she did, of course, get quite a lot of calories from alcohol).  I don't think I'm within 3 months of death although my next scan will be telling.  It is becoming clear that this disease is going to win for sure and I will not be one of those who gets ten years.

Impact on Relatives

Cachexia in the terminally-ill relative

Loss of Appetite in Cancer Patients - Part One

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.

From a site about this topic:

"..the inability to eat and the associated weight loss often causes conflicts within relationships. In fact, nutrition and nutritional status have a central position in the concept of health and wellbeing for many patients and care givers, and weight loss and inadequate nutritional intake can lead to anxiety and a feeling of hopelessness. Available data suggest that patients and their families view poor appetite as the most distressing symptom they encounter during cancer treatment."

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, I have to say 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!

I understand this thinking all too well.  My mother died of cirrhosis of the liver and she barely ate for the last years of her life.  She was about 70 pounds at her death, and she was normally in the 130s. Naturally, this caused incredible distress for my father.  My parents were never big eaters,  but after they retired and moved to Nevada, they did enjoy going out to lunch every day and eating a sandwich or steak. They rotated restaurants; my dad, the big flirt, always chatting up the waitresses. At some point, my mother stopped ordering food. (Although not wine.)  Because it was their only meal of the day, she began losing weight.  And more weight. At that time, she didn't have a diagnosis of anything wrong, so nobody understood what was happening or why.

In frustration, my Dad asked me to come and cook for them, thinking home-cooked meals might tempt her. Being a dutiful daughter, I took a week off work (this was ironically just a couple weeks before I was diagnosed with cancer.)  I spent time cooking all of my mother's favorite meals, freezing leftovers so at least my Dad would have something to eat.  I knew it would do no good for my mother - but I, too,  believed it was because she was stubborn. I thought she lost her appetite because of her drinking but could eat if she wanted to.  Knowing she wouldn't listen to her daughter, I didn't spend any time trying to talk her into it.  But my dad was hopeful my cooking would help, and during her afternoon naps, he would tell me about his worry.  The rest of my family spent time literally begging her to eat.  He and the rest of the family told her how much her body needed food, encouraged her to "take one bite," and all the rest of the things she, as a smart woman, already knew.

Her only response to these many entreaties was to shrug, light a cigarette and pour a scotch.

Now we know she was sick from end-stage liver disease.  And now, sick from end-stage cancer, I see the other side of this food story.  The only difference for me is I don't get any calories from alcohol.

My mother didn't have the capability of explaining what was going on with her - but I do.  And not only do family members need to hear it, medical professionals do too.

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. My husband and I thought when we were retired we'd eat out regularly, trying new restaurants, travelling to places like Chez Panisse. My town has a good food scene.  I used to know when restaurants opened, and I intended to sample it all.  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.

The things I used to like don't taste good to me anymore, and not only that, the texture seems weird.  I used to love eggs - I could eat eggs every day.  Loved them fried, scrambled, poached, hard/soft boiled, on salads and pasta, you name it.   Now they taste sour. And the texture is nasty.   A scrambled egg seems to have a gritty texture, like it's filled with sand.  An egg over-easy, the way I loved them, is like oil. I can't even remember what I liked about them.  Anything creamy seems oily to me which is why I can't tolerate those Boost type drinks.   I physically react to food that I no longer like - just a few swallows and my throat closes and I wretch from disgust.  Giving me food is like putting a plate of crickets in front of me and expecting me to eat it.  I think of the crunchy legs in my teeth and shiver.  Just....no.

There are still foods I like.  Fresh fruit.  Oddly, I like sweets now, candy, like a little kid.  My husband buys whoppers for me.  I can't eat an entire candy bar but a couple whoppers give me the sweet I want without hurting my stomach too much.

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; it's probably why I've always been thin. 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 had a big meal the other night - a babyback rib and a 1/4 cups of greens.  To me, these days, that is a lot of food.  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 weigh 89 pounds now.  That really isn't as terrible as you might think, because my normal weight hovers at around 100.  I think I was 104 when diagnosed.  My highest weight ever not pregnant was 107 so I'm really not as thin as it sounds.   But just 2 months ago, I was 95 and it had been steady at 96-97 for a year, so we are going in the wrong direction.  I don't eat much but it's the same amount I ate 3 months ago.  So the cancer is clearly changing my metabolism.  I am starting to look pretty skeletony.  My hip bones show, my rear end is completely gone and my jeans, a Size 00, hang on me. Being this thin is uncomfortable - sitting hurts, sleeping can hurt, bones clang against bones. I sit reading with my knees up and my silly husband likes to come up and kiss my knee.  I'm afraid he's going to get a cut.

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.

So if you are living with an anorexic cancer patient - and you understand now that suggesting/nagging/begging us to eat won't be effective - does that mean you can do nothing?

No.  I have suggestions.  This is getting long, so I will write a part II about what is, in my opinion only, the best thing to do for us.

National Family Caregivers' Month - written by my husband

November is National Family Caregivers' Month.  My husband is the one who does most of what we know as "caregiving."

Recently,  I asked him, "what is it like?  What does being a caregiver mean to you?"  Our plans for life and dreams for the future have certainly ...changed. Things we thought we'd be doing, we will never get to do. Tasks that I did happily and without thinking have fallen to him.   I don't think he thought of himself as a caregiver, and I do my best to not have my disease physically impact my family more than it must, but of course, somebody has to take up the slack.  I wondered what he thought about it.  I was delighted to see that he wrote down what he had been thinking for the blog.

And then, of course, it made me sad.

Below is what he said.

True Companions

“The Caregiver”

Pre C

Ann and I were married relatively late in life; I was 47 and she was 36.  We each had children, and were a family of five right away.  We bought a house and moved in together five months before our wedding, which we held in our backyard, surrounded by family and friends.  We were very happy.

With a backyard wedding, you can do things the way you want, and one of the things I've always liked to do is put together sets of music.  They would be called “Playlists” today, but we just called them “tapes”.  The first song on the tape was used as a backyard wedding march.  It was a song called “True Companion” by Marc Cohn, and was a song we both liked very much.  Its opening verse is about a young couple beginning their lives together. My daughter started the playback when Ann and her father started to walk, and ended it when she arrived where I was standing, at the completion of that verse.

But there is more to “True Companion” than that verse.  It goes on to talk about the companions as they grow older.  

When the years have done irreparable harm
I can see us walking arm in arm.
Just like that couple on the corner do
Girl, I will always be in love with you.

I thought about how that might go for us. Being more than 10 years older than Ann, and given that women, on average, live four years longer than men, I knew that there was a distinct possibility that Ann would outlive me, and I did all my financial planning to make sure I would leave Ann in a good living situation when my end came.  Oh, sure, I'm a healthy guy, and my parents lived into their mid-80s, but 14 years is a big spot. Two-plus years later it became even more critical when our youngest son was born.  

But, emotionally, I just knew that we would get to those golden years when it was just us, and we could do the things we had always wanted to do as Senior Citizens.

“What the heck is that?”

Most of you have read Ann's early blog posts, so I thought I'd borrow her opening question.  But first, a little background on me.  I rarely show emotions, especially negative ones.  My maternal grandparents were English immigrants and, through my mother, “stiff upper lip” was part of my makeup.  I also consider myself a problem solver.  So, rating people on the Kirk/Spock Continuum, I am way Spock.  Those of you more to the Kirk side will have different reactions than the ones I'll be describing here.  Anyway, when Ann came out of the bathroom and showed me the lump she had discovered in her breast, my thoughts went to what else it could be besides cancer.  Not denial, really, just trying to identify other, less ominous, possibilities. Like a benign cyst, for instance.  I'd had those.  

Ann is one of those people who wants to do everything herself, especially medical appointments.  And the appointment to find out what the lump was was no exception.  I was at lunch, walking through Capitol Park, when she called me with the results.  In a calmer tone than you might expect she told me that her lump was cancer and she had a referral to a surgeon.  I tried to remain calm as well, and told her that I would be going with her to see the surgeon.   She didn't object.

The appointment with “Rockstar Raja” went well.  He said that Ann's tumor was Stage 2 and that the combination of a mastectomy and follow up chemo was likely to result in a cure.  That made me feel a little better.  He also referred Ann to a plastic surgeon to work on her reconstruction, which surprised me a little.  Both surgeons would do surgery at the same time; Dr. Raja first, and then the plastic surgeon.  “No oncologist?”, I asked.  No, he said, those come later.

Surgery #1

The mastectomy and initial plastic surgical procedures went well, and Dr. Raja reported that the margins were clear.  So my immediate reaction was one of relief.  The cancer was in the bio-waste bin and chemo would be a precaution, to make sure it didn't reappear.  Looking back, that was terribly naive, but I'm a “glass half full” kind of guy, and that's what I thought.  You catch it early you live, right?

A digression:  I am writing this because several people have asked me what it is like to be a “caregiver” for my wife.  I have a hard time with that question, because I don't really consider myself a caregiver.  My wife has physical problems, and I need to help her with them.  A very Spock way to think, I suppose, but that's me.  Ann is a very strong woman emotionally (as you can tell from reading her blog), but there would be times when I needed to do more in the way of emotional support, and I usually was a couple of counts late on those.  I wish I had been better.  

After the mastectomy Ann had trouble moving, and lifting and driving were out of the question.  So I took her everywhere she needed to go, which were mainly medical appointments, since she really didn't want to go anywhere else.  Post Op care was mostly provided by the plastic surgeon, and I learned how to deal with emptying the drain bag that goes with surgeries involving the lymphatic system.  I took her to meet the oncologist, and to the first few chemo sessions.  But as soon as Ann was able to drive I quit going to those, at her request.

Surgery #2

Ann had very simple, and clear, requirements for her breast reconstruction:  she wanted to look good in clothes.  But the process turned out to be much more problematic than the mastectomy had been.  Although we didn't know it at the time, the plastic surgeon was dealing with his own health issues.  He scheduled the first procedure, and then canceled it at the last minute.  I took Ann to the hospital, and she even “gowned up” before the nurse came in after a long wait and told us that the surgery had been canceled.  Something about the hospital not having the right kind of stuff on hand.  So Ann put her clothes back on and we left.  Emotion on that particular day,shared by both Ann and I, was anger, with a side of frustration.  

As those of you who have been through it already know, breast reconstruction is not the same as a Boob Job.  Both involve the same body part (sort of), and both are done by plastic surgeons, but the requirements, issues, and results are very different.  In Ann's case, one of the results was a frozen shoulder.  She was unable to raise her arm more than a foot or so from her side.  It made things like getting dressed difficult and painful.  It was also semi-permanent.  While it has improved some over the ensuing years, her shoulder is still not right.  It sent a very important message to us – even if you beat cancer, you will never truly be the same after its treatment.

Mets

Ann didn't beat cancer after all.   She was left with more than a missing breast and a frozen shoulder; she was left with cancer.  

Cancer treatment, in addition to causing a number of health issues, like hair loss, slipping blood counts, and a host of other conditions, doesn't go on forever in most early stage patients.  Most eventually become “No Evidence of Disease” (NED). At that point, treatment stops, and breath holding starts.  While you are happy to be out of treatment, and on the road to good (or at least pretty good) health, there is a background concern that the cancer may come back.  And, within a few months, it did.  We were first surprised, and then devastated.  We'd seen the movie on the development of Herceptin, and it seemed like it would lead to a cure.  But it didn't.

I didn't go with Ann  to see the oncologist when he discussed the new scan results with her.  He told her that the cancer had spread to her liver.  But he put a positive spin on it; the cancer was only in her liver, and there were only two tumors.  He ordered up new chemo and the treatment process was on again.  Likely for good this time.  

The average survival for  a Stage 4 patient with Ann's kind of cancer is two years.   And the Two Years to Live clock had started.    

Surgery #3

Ann likes her oncologist very much, and she has enough trust in him to be able to take bad news with an “OK, now what do we do?” attitude. He was aware of a surgeon in San Francisco who was doing liver resections on Stage 4 cancer patients with good results, including long periods of remission.  (Nobody says “cure” for a Metster; a long period of remission is as good as it gets.)  He referred us to that surgeon, who agreed to see Ann as a possible surgical candidate.  

So off to San Francisco we went.  The trip is only about 90 miles, but involves some of the worst traffic this side of downtown LA.  Hard to remain positive when you are inching toward the Bay Bridge.  Anyway, when we got in to see the surgeon he said he needed more scans before agreeing to do the surgery.  (SF scans are apparently better than Sac scans.  Who knew?)  

After the scans, and another trip (or two; I don't remember) to San Francisco, he agreed to do the surgery, at UC San Francisco.  He would remove half of Ann's liver, containing the larger of her two tumors, and then try to remove just the tumor from the other side.  At various times, our sons, daughter,  Ann's sister, and I were all in SF doing whatever we could to send positive vibes, for both the surgery and the post-op recovery period.  The surgery mostly went well, but the smaller tumor was too deeply embedded in her liver and couldn't be removed, so he ablated (burned) it.  

The Two Years to Live clock had been reset.

Abdominal surgery is rough, and we had another 90 mile trip to navigate.  We propped up Ann with pillows the best we could, and started out.  I've never been so aware of my driving in my life, as a tried to avoid anything that might make the car bounce.  I must have done pretty well, because Ann slept most of the way.  

C. Diff

The recovery from the liver resection was going well, and things were getting back to the new normal (not to be confused with the old normal).  We even held Thanksgiving at our house, as usual.  But what I didn't know was that Ann had begun to have diarrhea.  It got worse, and she told me what was going on, sending me to the store for Imodium. And then it got much worse, to the point where on the evening of Black Friday, she said it was time to go to the ER.  When the ER doctors heard about the recent liver resection and hospital stay they had a pretty good idea about what it was – a serious bacterial infection, C. Diff. Tests showed they were right, and they admitted Ann to the hospital, and straight to the ICU, with full protective clothing for everyone involved.  Ann not only had C-Diff, she had sepsis.

Visits to the ICU by people who didn't have to be there were discouraged and, with a son at home, I mostly stayed away, visiting the ICU only once.  After a couple of days in the ICU, they moved her into a regular room, but still with all the Hazmat conditions.  I was told to thoroughly clean everywhere she had been at home, because the C. Diff bacteria can live for an extended period of time outside the body, and is not only dangerous to the person with the infection, but to everyone who has come in contact with the places she had been.  So I washed all the linen and towels in hot water and bleach, and cleaned the two bathrooms she had used with bleach as well. I also bought disposable hand towels, to reduce the risk of infection even further. I am not, by nature, a germophobe, and generally consider clutter to be a bigger problem than dirt, but not this time.  This was serious, not only to Ann but to our son and me.

Early tests showed only partial success in beating back the infection.  She was still at risk of having the infection spread again throughout her body, almost certainly killing her.  To keep that from happening, the alternative would be to remove her colon, a procedure with a 80% mortality rate.  Fortunately, her test numbers improved with treatment and she got to keep her colon, and I got to keep my wife.  But it was a very scary few days.

As it turns out, the scaryness for me was just beginning.  They discharged Ann from the hospital mid-day Friday, a week after we went to the ER.  She wasn't cured, by any means, but the treatment, a very powerful antibiotic, was working and could be continued at home.  They gave her a prescription for the antibiotic and, after bringing Ann home and getting her comfortable, I took it to our regular pharmacy.  And that's when things got scary for me.  The pharmacy didn't have the medicine in stock, and wouldn't be able to get any until Monday at the earliest.  Monday seemed to me to be so far in the future that it would never come.  And, for Ann, it might not have.  An incompletely cured infection is worse than an untreated one, and I had a very real fear that my wife would be dead, or having her colon removed, by Monday.  The pharmacy called others in our area, with the same result – nothing until at least Monday.  So I called the hospital to see if they could give us enough to get Ann through the weekend.  They said that they couldn't.  Ann had left the hospital with some open but unused product, enough for one more dose.  But that was it; they were not allowed to dispense drugs to outpatients.  (Whose stupid rule was that?! )  They did give me a suggestion,though – to call pharmacies associated with other hospitals, figuring they would be the best bet to have some.   So I did that, with my first call to the pharmacy associated with the downtown hospital where Ann had her first surgery.  They had some, and said I could get it right away.  Whew!

A little while later, a co-worker asked me how Ann was doing.  I said she was improving daily, and then shared some other thoughts with her.  I said that  with metastatic cancer you knew that, barring some other calamity, you would die from cancer.  But it wouldn't be today, or this month, or, quite possibly, this year.  So you could establish a regular way of doing things for the near future.  But with C. Diff the situation was different.  It was entirely possible, almost likely, that you would die today.  Or tomorrow.  It is a very different, and overwhelming situation.  I wouldn't wish it on anyone.

Meals

Up to this point, this rambling narrative has been in chronological order, and will return to that in the next  section. But, since the original question was about being a caregiver, I want to work this in.  In our Pre C, life Ann did pretty much all the cooking, and continued doing that whenever she felt up to it.  I did some BBQ in the summer, but even then Ann did the rest of the meal. When she didn't feel well I would “cook”things like Hamburger Helper or other easy to fix meals.  But at this point, her appetite was near normal, and she grew tired of what I was preparing very quickly.  She asked me to get a cookbook and see if I could put something better on the table.  So, absent even things like knife skills, I started down the road of being the chief meal preparer.  Today, I do pretty much all the cooking.

The need to have good food on the table has become even more critical lately, as Ann has lost her ability to enjoy most food.  A cancer-induced anorexia, if you will.  So it's up to me to get her to eat, and not lose any more weight.  I do my best.   

Remission; Retirement

Eventually, a scan showed that the remaining tumor after the liver resection, the one that had been ablated, had become active again.  Ann's oncologist recommended a radiation treatment called the “Gamma Knife”, along with some new drugs in her once every 3 weeks infusions.  She agreed to the plan and had the Gamma Knife procedure.  The Two Years to Live clock was, once again, reset.

But it got better.  The treatment had worked so well that a subsequent scan showed that Ann was, for the first time in a long time, NED.  Remission!  The Two Years to Live clock was on hold!  At first, it seemed hard to believe.  But as the months rolled by, this NED thing had become the new normal.  If only Ann had felt better.  Even without active cancer, Ann really didn't feel well, a major disappointment.

Meanwhile, my situation at work was changing.  When our son was born, the Math major in me quickly figured out that I would need to work until 70 to get him through college.  As I said before, I'm a healthy guy who  actually enjoyed his job, so setting my sights on 70 wasn't that hard.  For one thing, it would improve my retirement income.

The State Of California retirement system gives a number of options for how to take your money in retirement, but they mainly come down to getting a larger amount until you die, or a smaller amount until you and your wife both die.  As I said in the opening section, for me the choice was easy, given our age difference.  But the choice didn't need to be made until retirement, and when Ann was diagnosed  Stage 4 my retirement date, in 2017, seemed impossibly far away for her.

But I didn't make it to 2017.   In 2012, upon the retirement of my boss, I was named Acting CIO at my department.  Those assignments are supposed to last no more than a year, but mine drug on for 20 months, until they finally hired a new permanent CIO, returning me to my old job, in May 2013.  I was fine with that.  My new boss?  Not so much.  For whatever reason, she clearly wanted me gone.  And, since I was in an “at will” position, she could demote me at any time, with only 20 days notice.  I had almost a year of vacation time on the books, and to keep it from losing value I would have to have taken it as a lump sum payment within the 20 days.  More income (good), but more taxes (bad).  Or I could accept a demotion and use the vacation over the next few years, until my  preferred retirement date of 2017.  But then I, once again, did the math.  With 30 years of service, my retirement benefit would be 75% of my salary.  Seems like a big cut.  But then I realized that a lot of deductions, like Social Security and Retirement Contributions stop when I retired.  So I did some calculations base on Take Home pay, and found that it would only be reduced by $400 a month in retirement.  Not too bad.  Then I calculated what my take home pay would be if I stayed working but was demoted.  It would drop by $1000 a month.  Even if I liked my job, which by then I didn't, I wasn't going to pay the State $600 a month for the privilege of working.  This was in November 2013.  I told my boss that I was going to start “vacationing out”, and retire in September 2014.   I was officially unworking, although getting paid as if I were still working.

When September 2014 rolled around Ann was still NED.  Remission was feeling more and more like the “real normal”, and Ann was, once again, 10+ years younger than me.  So the decision was easy; take the reduced amount and provide for my family after I'm gone.  

Now

As Ann and I both knew, but were reluctant to acknowledge, Remission in a Stage 4 cancer patient is temporary, as much as we wish it weren't.  A new scan showed that the cancer was once again active, and no longer confined to her liver.  The Two Years to Live clock was once again in motion.  She has started a new chemo regimen, but it is too early to tell how effective it will be.  Also, given that she is in constant pain  and the new chemo is making her sick, it's hard to be optimistic.  But there may well be more remission in her future, and we can't completely dwell on the present.  Just deal with it, and see what comes next.  

When Ann was first diagnosed Stage 4, she set her sights  on seeing our son graduate from high school.  She did that.  The next big event will be our older son's wedding, six months from now.  The oncologist has said she'll make that one, too, and she is helping with the planning and worrying about what to wear, just like any mother of the groom would do.  She's not done wanting to live, and I'm in no way tired of my role as caregiver, whatever that means.  So we still live in the present.  There's no rush in thinking farther ahead than that.  

Lifetrak Fitness Watch - Contest!

Hearing I was going to have to go back on a harsh chemo made me nervous.  I'm not in good shape at all.  When I started all this funny business years ago, I had the strength to manage it.  Now, I wonder how much more I can do.

During my period of remission, I did try to regain my health.  I took the exercise class from Triumph Fitness and spent 3 months improving my balance, my strength, and my energy. (Put Triumph on your donation list, they do great work.)  I purchased a smoothie blender from Amazon, got some powdered protein and yogurt and tried to get some calories in.  ("Try" being the operative word.) I didn't quite get to healthy, but I did get to better.  At some point though, this disease began crawling through my insides, making progress difficult.

Now that I will be starting another chemo, my 8th, I feel a new urgency to get my wrecked body stronger. Chemo, my friends, is harder the longer you are on it.  Those long-ago first six rounds seem like the healthy days gone by compared to what it is to start your 300th infusion.  I know I need to take some walks, get some natural sunlight, and not let myself deteriorate too much.  It's too easy to sit in a chair and turn on the TV, especially when one is in pain.

They don't seem to make any new episodes of Hoarders anyway.  Darn.

When LifeTrak contacted me to ask if I would review one of their exercise watches, I was intrigued. The timing was perfect, how did they know?

My first thought was "can I even wear a watch?"  My wrist is only 5 inches around.  Thoughtfully, their bands have holes to the very end, so I agreed to test it.  It fit,  and I have been wearing it ever since.  True, it's not a beautiful chunky bracelet on me; it's a big honking piece of gadgetry that takes over my entire wrist and half my arm.  While a large watch looks stylish on many women, not so much on me, and yet I like it so much I'm keeping it on.  

They let me select any watch I wanted, so after looking at them all, I selected one that would track the amount of light I get, the Fitness Tracker Brite 450.

Why that one?  Those of you with cancer have likely heard the idea that Vitamin D deficiency is being considered as a risk factor in various types of cancer, including breast. While that cat is out of the bag, having a fitness monitor that could track the amount of light I receive would be very helpful for me since I am lacking Vitamin D.  Whether D affects cancer relapse is unknown, but it cannot hurt you to get Vitamin D naturally, and maybe in the future we'll discover that it could help prevent a recurrence.    I have always been a bit of a light nut, owning a 10,000 Lux light box for energy and a sunrise light to help me wake.  It's true that light affects other aspects of our health, including metabolism and mood.  This watch not only tracks ambient light, it tracks blue light, which can interfere with your sleeping pattern.  (This is why it's suggested you not do screen time before sleep.) So it jumped right out at me as being something I could use.

Although I have a deep deficiency in Vitamin D levels and must supplement, I still think it's important to get natural light and allow it to synthesize on your skin.  Interestingly, there is an increase in the number of children who are presenting with a lack of Vitamin D, likely due to overuse of sunscreen, poor diets, and sedentary lifestyles.   There is no doubt that getting sunlight is a critical part of our health.

Light aside, the watch also tracks your sleep, your heart rate, and your physical activity (expressed in calories).  It is a step counter, of course, but you can set it for different activity levels. (Mine is set the lowest.) Tracking your heart-rate is as simple as a push of the button.

It syncs easily to your phone (in my case, an iPhone) and gives you a nice layout of your data, and it works with the iPhone Health app.  Awesomely, you also get phone notifications - telling you if there is a text message, somebody pins something of yours, a phone call - whatever notifications you have set just pops up on your watch screen.

I set it up easily - like most watches, you do it with a combination of button pushes.  It starts by asking your age, your weight, and then you set your goals.  How many steps a day, how much morning and evening light you want to get, how much sleep, etc. It will alarm you and remind you through the day to do the things you suggested.  Download the LifeTrak app for your phone, sync it and there you go.

You get information like this:




Well, hopefully, you will get better information than I do.  By clicking on these you can go deeper into each screen to track progress, and you can see  weekly and monthly data.

When you look at the app, it gives you health tips.  My very first one said I was more likely to die of heart disease than breast cancer.  No kidding!  That made me laugh.

I love the intelligent wake up.  You set the alarm for the time you want to wake up, and the period in which you want it to start.  For example, I have mine set for 20 minutes before I actually want to wake up.  Then the watch uses your own historical data and your movements to wake you up anytime starting within that 20 minute period.  It tries to alert you when you are not in a deep sleep, which makes waking up so much easier.

I haven't experienced any problems and I've been wearing it steadily for two weeks.  The only negative is that it is very dim.  The backlight doesn't brighten it enough.  You really need to be in good lighting to see it well.  But that little problem actually helps me with my goal  - go outside! Get near a window!   The only other problem was I told my oldest son I'd give it to him if I didn't need it after I'd had it long enough to review it. And now he doesn't get it.
 
You can purchase the LifeTrak exercise watch at their store or on Amazon.

I really didn't think I'd care for it as much as I do.  It does help keep track of our fitness levels and the light thing is crucial to me.  I  advise those who are recovering from cancer treatment come up with some sort of plan for the future.  Most people are understandably afraid of relapse, and while it is a possibility, worrying about it before it happens takes away from living your life now.  Many use cancer as a wake-up call for moving into a healthier lifestyle, and you can too.  You know better than most how important health is, and how suddenly it can be taken.  Once the intensity of treatment ends and you are easing yourself back into normality, a health plan is crucial, and I think a fitness monitor such as the LifeTrak watch can play an important role in keeping your goals in the forefront and seeing improvement.

And, because I don't review items without being able to give one to you - one of my fabulous readers is going to win one!   The holidays are coming, and this is a good way to help you or somebody in your family get a good start back to fitness or continue with fitness goals.  The winner will be getting the exact model I have - the LifeTrack Brite 450 with a black band (grey inside).  Good for both male or female.

To enter, click and follow the instructions.

I'm sorry, but this contest is only open to US residents.  

Good luck!