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.