Monday, November 23, 2015

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: "

"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.

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.

Saturday, November 14, 2015

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.

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.

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.    

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.  

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.  

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.


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.  


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.  

Sunday, November 1, 2015

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!

Friday, October 30, 2015

Check Out

On the wall in one of my oncologist's exam rooms, near the door, there is a sign that says, "Check Out."  

This is not the real sign

It may have been there all these years and I never noticed. Maybe I've never been in that exam room before. I'm not sure what it is telling me - is it reminding me to check out with the doctor's assistant before I leave?  Is it a reminder for the physician?  Perhaps that room was used for something else before it was an exam room.  The signage location makes no sense - stuck on the wall near the right side of the door where it can't be seen if the door is open.

Seeing a sign like that when you get bad news like I did is kind of like hearing the music to Jaws playing in your head when you go to the beach.  Ominous.

I wanted to take a photo for you all, but somehow, pulling out a phone to photograph a sign when your physician is sharing that cancer has exploded throughout your abdomen seems.....rude.

Perhaps even a little checked out.

I went for my usual therapy on Wednesday and asked for a copy of my latest PET results before I saw the doctor. Although he had called me to explain it, I was unpleasantly surprised by what I read, which was worse than I had anticipated.

I also realized I needed an anatomy refresher.  When my doctor called me with the news, he had told me that the cancer was in the abdomen, including the porta hepatis, which I thought was actually inside the liver. Well, radiologists don't seem to consider the porta heptatis as part of the liver tissue (or parenchyma, as they would say) as the report says, "no definitive metabolic evidence of recurrent hepatic metastatic disease."  The main areas of involvement seem to be between the stomach and liver; the porta hepatis is the gateway area that the veins, ducts and artery flows through to get to the liver. I also had to look up the other places cancer has spread:  the gastrohepatic, portacaval, and left periaortic regions.

Technically, "a 1.5x1.11 cm gastropheptac node, multiple adjacent/confluent upper left periaortic nodes, multiple-ill-defined nodes in the porta hepatis and portacaval regions" all with SUVs of 6.0.

I must have missed that day in med school.

Cancer is also in the subpectoral and axillary nodes, areas with which I am familiar.  It seems Machiavellian to now have cancer in my axillary nodes so many years after the original diagnosis. I remember clearly my old breast surgeon, Rockstar Raja, being elated that my nodes were clean despite extensive disease in the breast.

Devious joke, Mr. Cancer.   You got me.

Apparently, there is also disease in my left lung - four menacing, tiny lesions.  There are multiple affected areas in my upper abdomen,  far too many to list.  It's considered "moderately extensive" metastatic disease, an oxymoron if I ever heard one.  Only in medicine...

Well, shoot.

My liver?  Clean as a whistle.  A whistle which has been kept in a pocket, used and is covered with lint and dried spit.  That kind of clean.

So the plan is to get me on TDM-1, aka Kadcyla, as soon as possible.  "Within the week" my oncologist said, alarmingly. I'm not sure insurance companies do "within the week" though.

Oddly enough, I had a reaction to my old friends, Herceptin, Perjeta and Zometa.  I sat, happily hooked up to the drip,  watching the nurses swear at a new EHR system they are implementing.  As the Zometa started, my back started aching intensely and terribly. It felt as if a rubber band was wrapped around my intestines, and was being tightened.  The pain spread to the area that has been hurting all along -  my side, my left flank.  It was quite strange.   I've been on these drugs for years.   Having a reaction now would be bizarre, to say the least. But the pain intensified until I couldn't take it anymore, and I reached up and turned off the drip.  My nurse gave me some Toredol. I had some pain meds in my purse that I also took, which barely helped.  My nurse even thought I should go to the hospital but I nixed that idea, as I always will.  I'd rather suffer at home than be pain-free in a hospital.

Two hours later,  I was fine.


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.  (I am now down to 90 pounds).  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.

So another appointment over and another goal set:  I told my oncologist that my oldest son was getting married in May, and I want to live to be there.  As I stated my desire, I looked over his shoulder at the check out sign, and thought "not yet, buddy.

Not yet."

Speaking of checking out, is this a good time to remind you to start your Amazon shopping from the box on my page? Check out the right side, and click.    If you start on my page, anything you put in your cart and check out during that trip will net me a small amount.  With the holidays coming, and a new insurance plan with a $5,000 deductible, I am going to need all the help I can get.  Thank you.

Friday, October 23, 2015

In the Stream

I was on a live TV, web streaming show called The Stream yesterday.  It was an interesting experience.  Perhaps not my best interview, as it was done via Skype.  I had so much more to say! There was some lag so I could not hear when the other women were finishing speaking, and I could not see the other women because I had to look at my camera and not the screen.  Looks like some had the same issue as you could see us fiddling with our earbuds.

The messaging is important so while maybe not my finest technical interview, it's worth sharing!

Thanks to The Stream for having me on.

Wednesday, October 14, 2015


Over the past four years since being diagnosed with mets, six with cancer, I have had approximately ten PET scans, about 50 CT scans, 24 MUGA scans and a sprinkling of bone and other types of imaging tests.

Imagine the time that takes - the driving, the parking, the waiting rooms, changing, prep, lying in machine after machine. Hundreds of hours I've spent - no, thousands - not only waiting for tests, but waiting for doctors and waiting for treatment. I have likely had 500 doctor appointments over the past years - often going several times a week. My life is thoroughly medicalized and has been since my initial diagnosis.

Lying in these machines, waiting for them to probe through my skin and reveal the secrets lying beneath - to learn whether cancer is growing or retreating, whether I have time to live or it is time to prepare for death - I think. I think about what it means to have this disease take away your life piece by piece, health, job, functioning..but also what it means to be one of the lucky ones who enters remission and gets a reprieve from cancer and gets some of that back.

And then, have it taken away again.

Which is what just happened.  My remission is over and I have active cancer again.

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. I submit my body to needles and chemicals and radiation and scalpels, for them, to see as much of their lives as I'm privileged to see.

In history, we are nobody. Only a few of us will have names that live past our immediate families: Steve Jobs, Bill Gates, Barack Obama. 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. So this time, as I sat in a darkened room with radioactive sugars dripping into my system, preparing for the test that will tell my fortune, as always, I think of my family.

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

My cancer regrowth is in a difficult place - abdominal lymph nodes and portal hepatis. Lots of important veins and structures there.    I'll have a radiological interventionist consult to see if it can be biopsied.  If not, then I will go on Xeloda, and stay on Perjeta and Herceptin.  And cross my fingers that I am allowed another little miracle.  The miracle of time.  There are more milestones to reach.

Monday, October 12, 2015

TCL Roku TV - Givaway!

I've been hinting on facebook that I had an awesome giveaway coming up - and today is the day it begins.  I cannot be any happier that I get to give away such an amazing prize. ::::drumroll::::

A 32 inch, TCL Roku Color Series Smart TV - with a colored bezel to match any decor!

I was sent one to review, and being a techie, I was tickled pink. (Hey, it's October.)  

I have a confession to make.  I've been wanting to get this off my chest (what chest I have left, that is.)  I actually do like the color pink quite a lot.  And these TVs come in three different colors, including pink.

Still,  the TV I selected is blue, to match my silver, blue and purple bedroom.  I would have felt guilty admitting to wanting a pink one.

Let's get this out of the way:  this is clearly not a tech blog, so why would TCL give me a TV to review and give away?  Well, they are donating $50.00 for every pink TV sold to the Breast Cancer Research Foundation this month.  One of the higher-ups in the company lost somebody to breast cancer, so this is near and dear to their hearts.  The donation this month is truly meaningful and not just lip-service to "the cause."   Trust me, I sent many emails back and forth before I agreed to this promotion.  They did their research and found a good charity - didn't reflexively give to Komen.  (I love all my readers and jumped at the chance to give you a TV, but I would not have accepted this if Komen was the charity.) As you know, I don't want the marketing of our disease to be exploitative, and I want it to go to a good charity.  TCL (The Creative Life) meets both criteria.

To show you how sincere they are, the company told me I didn't even have to mention the donation if it made me uncomfortable, but of course, I will because I believe it comes from a good place.

Back to the TV:

We women are also in their target demographic so there is more than one reason to have me review their product.  The TVs are attractive (the bezels come in blue, green and pink) and maybe tech manufacturers are starting to understand that a big black box that dominates one of our rooms should, you know, be stylish.  Women buy TVs, too.  Duh.

Not to mention that we are sick. The truth is, sicker people watch more TV than healthy people.  Despite my pronounced dislike for daytime TV in doctor's offices, I am an admitted TV addict.  I love to read but years of chemo has made concentrating much harder.  So I watch a lot of documentaries, among other (trashier) things.  I have a Smart TV already, so  I watch network shows, cable, streaming, YouTube - I have Amazon Prime, Netflix, and now Roku.  I have my media bases covered!  Tech cred:  I bought a TiVo in the year 2000 when my son was 3 years old, and in his entire life at home, he has never seen a commercial nor known that TV hasn't always been pause-able.   All that is to say is I'm not a grandma behind the times - at least on this one front.

I know that not everybody is as into technology as me, so I was eager to see how this TV worked.

The box arrived well-wrapped.

Packed beautifully

While I intend to mount it on the wall, for now I just put it on a side table in my bedroom, where it stood easily without tipping.  It is very light, and I was able to carry it myself.  People who follow me on facebook know I've been feeling quite ill, and yet I still had no problems unboxing or moving it.

My first impression was that the TV with the colored bezel was attractive.  It adds a subtle touch of color to the TV, a welcome change from the normal black or silver.  The color is not so bright that it will overwhelm a decor but it adds a much needed touch of charm.

Pretty colors! Maybe pink would have matched after all!

I know that for some, technology can be confusing so I paid close attention to the setup.  It was a breeze, and if you know your WiFi password, you can do this without having to call in younger family members.  Even my husband could do it!  You are guided through it step-by-step.  You enter your password, you sign up for a Roku account, and you are done.

The remote is simple  It only has the buttons you need.  You want to stream something from Amazon Prime?  Hit that button.  One button access is handy.  You can get exactly what you want - streaming videos and shows, with no difficulty at all.

The picture quality is fine at 720p.  I haven't spent a lot of time watching shows yet but I didn't see any problems with motion or color control.

I am not connecting it to my Direct TV system (or ATT or whatever it is now) so I can't speak to any complications that may bring.  It looks easy as the rest of it, but for me, this is a perfect bedroom TV, where I can watch some YouTube beauty gurus complaining about each other (hilarious drama queens on YouTube if you haven't seen them), or stream a movie while lying in bed.  I use my Direct TV DVRs to record all the shows that I want to watch, and my husband and I watch TV together in the evening. This is the perfect TV to put in a bedroom, office, or craft room and watch all that weird stuff your husband doesn't want to see.

Botched?  My 500 pound life?  Hoarders?  I'm in!

This may be a perfect TV for cord-cutters too.  It is not expensive, it's fashionable, it is easy to move and set up and it functions perfectly with all the streaming services available.  It also comes in larger sizes so is perfect for a living room wall/main TV.

And I cannot believe how good this is, that I get to give one to you!   I love my readers so much. You have propped me up during times good and bad, and I'm so happy to be able to give back this way.

Bathed in the glow of happiness that I can give you one too!  

So enter the contest below and good luck!  I am using Rafflecopter, which picks a winner randomly.

For more information about TCL, please go to, follow them on twitter or Instagram at #tcl_usa.  To enter the contest, you get an extra entry if you send a tweet, so tweet away!