Whom to Tell (and When)

Me and my family out at Springside Restaurant in Auburn, celebrating my birthday

(Written Oct 17-20, 2015)

That is the question.

I’ve seen two examples in my life of people making total fools of themselves, going around telling everyone they have 1) cancer in one case and 2) something like MS in another, only the facts didn’t bear any of their pronouncements out, and everyone felt sorry for them, alas, in vain, because they were just fine.

All this soured me to making grand pronouncements before knowing for sure what one was pronouncing.   My first bout with cancer, I walked around for several weeks thinking, “I think I have cancer.”  I didn’t tell anyone, just me and God knew, and I walked through my normal routine of a life with no one knowing that way back in my mind, up on a topmost shelf, was a box that I would return to in my thoughts while in the lunch room or during a meeting, or at the supper table, and in that box was the thought – and how can it be? – the thought was, “I think I have cancer!”.

Me!  It couldn’t be.  Other people got cancer, but not me.  So I would drive to work as always and change my babies diapers later in the evening at home, as we had little ones, and my mind would wander for a second, to that box high up in the closet in my mind, and there we would ponder again:  “I think I have cancer,” and of course, the conclusion was always that it couldn’t be, right up until I got my next symptom, which then threw the whole denial process off.

Gradually I came to terms with my cancer before anyone knew, and I knew, especially after I went a week eating nothing but feeling stuffed as from a Thanksgiving dinner (I had a tumor the size of a lemon in my stomach, not food): I really knew, and when my doctor whom I finally went to pressed on my abdomen and it hurt, I knew, even before there were any tests.  I could have been this or that, but I knew it wasn’t:  it was cancer.

Right after I had the Upper GI, I went back to work and in 20 minutes I got a call from my doctor – not a good sign, for sure.  They had found a mass.  I knew what it was.  I met my dear wife for lunch an hour later, and we took a walk around the block and I told her, and let’s say it was enough.  It was.

Then the endoscope, where the doctor said it could be benign, but I knew it wasn’t.  How did I know?  Am I a doctor?  No, but I knew.  And it was cancer.  And everyone was surprised, except me.

Then we could tell others, and we did, and they were all shocked, and people I’ve known for years looked at me with a new appraisement, like, “Once there was that very normal guy with glasses trying to raise a family,” to, “My God, he has cancer, but let’s not stare.”  A few people pitied me, and I told them in a nice way to knock it off.  I needed many things, but pity is not one of them.

Those were dark days, when I remember driving to a scan with tears rolling down my cheeks.  This was real.  Those darn odds – how I hated them, and I knew they were just odds, and people had beaten them, but could I?  Who knew?  And in the midst of me coping with the news, there was my family, and they had to cope as well; we were all coping.

I had cancer.

That was the first time, the first go-around.  Cancer is clever:  it retreats hopefully forever, as it’s all gone, but you never know:  just one cell, and you’re back at the beginning, like a player who goes from square 88 in Chutes and Ladders down to 12, taking a big slide down, down, down.  Six years after my initial cancer, I was starting to feel better, had a part-time job, and was even wondering if I could go full-time.  It was all so rosy, wasn’t it? I being the one who had beat cancer, and not any cancer, but the deadly esophageal cancer.

My wife was overseas at the time, and I happened to have a scan then.  The scan showed that there might be something in my lung, but my doctor wasn’t concerned about it, since cancer doesn’t usually live in that spot, he said, so I decided, “If he’s not concerned, I won’t be either.”  So I was not concerned and didn’t tell anyone.  Why worry the world?

So we’re watching the thing, and you go on with your life.  But I really didn’t think about it – again, I reasoned in this eminently logical way:  if my doctor is not concerned with it, then I shouldn’t be either, and I wasn’t.

As a follow-up to this spot – which got smaller and turned out to probably be a fungus, my doctor said – I had a scan, the last scan of my life, as we were at the five year mark, and my doctor didn’t come in all happy as usual, saying all is well and asking a few light questions about how things were going in a general way; no, he came in uptight, sat at the computer, and said, “I want to show you something.” And show me he did:  two spots in my lower left lung had shown up, little white dots in a sea of black, with the white masses here and there on the outsides of my inner lung – my organs.

I was there all alone with him, and it was October, the pumpkins were out in the fields for the picking, and the weather was turning colder and nasty at times,  but also the trees in full brilliance on good days, and we had the holiday season ahead of us.  My doctor and I had a good conversation about what to do or not to do, and we decided to do nothing but just watch it.  Next scan:  three months.

Now here’s the question:  do I tell people about this spot? My wife?  My kids?   Friends?

Here I went back and forth, thinking that I didn’t want to keep a big secret from my wife, but then I was also thinking: what good would it do to tell her, only to have her worry for three months through Thanksgiving turkey and while opening up Christmas presents, and ringing in the new year.  Would she be any better for it?  Would anyone?

I thought no, and didn’t tell her.  I didn’t tell anyone.  I walked around as I had seven years ago, thinking, “I have cancer,” and at Thanksgiving wondering what the next Thanksgiving would be like, if there would be another one for me, just having myself and God in the know.

There was a second scan scheduled in January, and three days before it was scheduled to take place I took my wife out to breakfast and told her about the spot, which was potentially cancer.  She was not expecting this at all, and I could understand that, but she was glad I hadn’t told her.  There was nothing to be gained by knowing, and she got to carry the burden for three days before the scan, rather than three months, as I had.

The test turned out positive for cancer.  The thing had grown.  I didn’t have to be that way:  a lot of times cancer can just hang out, or it could have been benign, and a lot of times they just watch it from scan to scan to keep an eye on it.  But, no, it had grown, and a later biopsy proved that it was cancer, and from the original cancer seven years ago.  It had metastasized – a big scary word.

The rest is history:  seven months of hellish chemo ending in an operation.

Now I am faced with yet another possible spot, the nature of which is not certain, and we are waiting, my wife and I.  The kids know nothing, nor do we want them to know anything.  Again, why worry them when it could turn out to be scar tissue (though tissue that has grown) or some other weird thing that happened to hang out in my lungs at the time.  My kids took a trip to Israel, and why ruin it for them, worrying about me when the spot could turn out to be nothing?  So we pretty much kept it to ourselves.

I say “pretty much” because we did tell a few friends, whom we are close to and could pray for me and us, and that is important.  Having someone praying for you is essential; we need warriors on our side.  Also they are also able to sympathize with us and support us.  But a few is enough.  No more.

Then if it is cancer, we get into the actual telling of people.  How do you do that?  Call them?  Send out an email?  Even use Facebook?  Then there’s what to tell:  most people, I think, just need the broad brushstrokes, and it’s always a charged process.  Telling Mothers – my Mom – is always the worse, and the kids – my dear kids.  Really, you don’t want to tell anyone anything in a way; just have them go on with their lives, enjoy it, and we’ll descend into the bowels of the cancer world, where medieval tortures (chemotherapy) are used to cure diseases – as if it would work, though it sometimes does.  And I know someone who got prostate cancer and didn’t tell a soul, not a single member of his family, but checked himself into a hospital a town away and got treatment for his cancer.  He was a tough old bird, but the secret got out:  there was no one to drive him home one time and, against HIPPA regulations, a nurse called the family.  Yes, the call stirred a nest of excitement, as you can understand, so the complete silence technique is fraught with pitfalls.

(And isn’t that how it used to be, when cancer was a naughty world, and it was kept from the world.  How times have changed!)

So we tell people the past two times, and everyone knows the world has changed and everyone has a cancer story to tell once you’re done with your announcement–  a story about their Mom, or an Aunt, or even a child.  Cancer is all over.  It takes down the great and the small.  It touches everyone in some way.  Who has escaped it?

Telling.  It’s hard to tell the kids, because they – the teens – have been through it twice already, and saw their lives uprooted.  The little ones – ages 12, 10 and 9 – went through it once, so they are seasoned veterans.  When we told the oldest ones about the reoccurrence last year, they were stunned and upset;  all the old memories were dredged up, I think, and we were back in it.  The little ones had no frame of reference but they soon got one.  I often tell people that when one person in a family gets cancer, they all get it, and all – from youngest to oldest – have to cope with it in their own way.

Then the others.  We had decided to tell only a few friends, and when my wife told friend, her friend cried.  It’s hard on everyone.  One can try to put a nice face on it, “Oh, we’ll beat it again,” but perhaps as you say the words, you don’t quite believe it yourself.  Still, there is a God in heaven, and He does as he wishes, so if I live or die, it’s really up to him.  But when people say they will pray, that helps.

Anyway.

So you tell them at the right time hopefully, and hope to have wisdom on how much to tell them, and telling is important, because we are in need of help and good words and comfort, and warmth, and what could be called real love and guess what – so are they!  We tell, as the dark yawn of something bad has opened, and as much as we try to ignore it with all sorts of magical thinking (“It will be different with me…”) the truth is the truth that we choose not to believe but must believe:  I might not make it.  That is why we tell:  because we need each other, now more than ever, and everyone – the patient and the family or the friend or the co-worker or just someone else – all are on a strange, uncharted journey and have something to learn.

Birthday Biopsy

(Written Oct 15, 2015)

Today was my Birthday Biopsy at Crouse Hospital, where I was wheeled into a room with a white donut CT Scan machine by a very nice male nurse, who had me position myself on a gurney face down with my hands above my head, and soon opened the spigot for medicine to course into my veins, and I wasn’t knocked out 100 percent but was soon in what is commonly referred to as “La la land,” a nice place where nothing hurt and I could feel them tinkering with something (the needle) on my back, but I didn’t care, as I was skipping across the stars!

Happy birthday!

I woke soon enough and slept off and on for two hours, waking up due to the intermittent loud noise in the recovery room, which proves that it’s impossible to sleep in a hospital.  Then I was awake, as if I had really slept, and Joe Pavlos was there, and he brought awesome conoles from a great bakery in Syracuse, and the nurses had purchased a Happy Birthday balloon for me, and there were threats that if I didn’t guard the pastry, they would eat it.

Thank you Joe Pavlos, and the nurses, and my wife who took care of me!

I should mention that they placed a gold marker on the cancer site so that later on they might blast it with a high intensity pinpoint-accurate radiation beam, otherwise called Cyberknife.  At this point I have two of these gold markers, each worth $50, so I walk around with $100 in spare gold if I ever need it, but it’s difficult to extract.  I also have a port, which is like a permanent IV in my chest, and a J-Tube, which goes into my intestines and allows me to get tube feedings at night.

That’s all the plus things that have been added to me.  But there’s minus things as well.  In the course of cancer treatments, I’ve lost half of my esophagus.  I’ve lost 60 percent of my stomach.  Part of my lower left lung:  gone also.  A few lymph nodes for the record:  bye bye.  We also said goodbye to the vegal nerve, which connects my stomach to my brain and makes it so I don’t get hungry like other humans.  Who needs a valve between the stomach and the esophagus?  What’s the point?

So like a cyborg, I’ve lost some pieces and added some new pieces in.  Regarding the contraption called my Upper GI system, I’m totally replumbed, such that my stomach is behind my heart.  Somehow, like a third world plumbing that keeps getting fixed but somehow keeps delivering water, it works.

So when I knew they had placed the gold marker, I was glad to have another piece on board.  We have to balance out what I’ve lost with what I’ve added, and I want to keep ahead.

Eventually I got to eat and drink again, and we left for a restaurant at the Syracuse University Campus, King David’s, that has awesome Middle Eastern food.  Light shopping afterward, then home, and we had a small but nice party for me with the family, since we had gone out with my parents a week ago and that was the real celebration.

It was a really nice, low-key birthday day, all told, even with the biopsy.  Does anyone know what you should do on your birthday?  As I said before in my last post, it’s telling that God had my birthday and the biopsy collide on the same day.  What can this mean?  Does it portend something good or bad?  I don’t know.  But I do know that whatever comes will be for my good, because it’s written in the Good Book.

Waiting Game

(Written Oct 16, 2015)

We’ve been here before.

We are waiting.

I had a biopsy on my birthday that could change my entire life.  Everything hangs on it:  whether I live or die, really.  It’s that big.

We’ve been here before.  Lots of times.   For about a year and a half after I got cancer, I would frequently get an endoscope, where they would put a device down my throat all the down way into my stomach to “see what they could see,” and always they saw the same thing:  cancer.  They also always got a biopsy, and it always came back negative.  The best part was this:  the endoscope always seemed to happen toward the end of the week, so we would have to wait and wait over the weekend for the results.

There was one time, though, when we didn’t have to wait.   Just after my first scope when I was green to the entire endoscope scare, the doctor told me in no uncertain terms that he had seen cancer.  I was barely awake from the procedure.  Even more:  “I told you it would come back.  You should not be surprised.”  Just like that he said it.

Two days later he called my house and, as I was not there, talked to my wife.  He said, “My diagnosis was not 100 percent,” which meant he was 100 percent wrong.  The cancer had not come back; it was probably just a yeast infection.  (Of course, a doctor couldn’t go so far to say he was wrong.  No, no, no.)  So it hadn’t come back after all!

(By the way, when talking to my oncologist about this later on, he said the GI doctor was totally mistaken.  It could never have come back to the extent that he thought it did in the time since my surgery and chemo.  These guys are so specialized, they really don’t know much about the other’s field, but that’s another story.)

So we are waiting again, and what can we do?  We go about our normal life.  There are always dishes with a big family, and clothes are a monster – always need washing, putting away, and baskets to be lugged down to the laundry room.  Bills don’t go away, and with teenagers – they always need to be picked up or bused here or there.

But it the back of your mind, it’s there:  this could be it, especially since this thing has grown, and when things grow in a cancer survivor, there is reason for concern.  The mind races:  what if?  How will we tell so and so, and would I really want to do chemo again?
What does this mean?  Then one wakes up in bed at 2:38 exactly, according to your phone, and thinks:  what if it is cancer?  What if?

What!

And we wait, and call the kids dentist to reschedule their appointment, and buy groceries to feed the teenage T-Rex’s in our house, who eat like one of the reptiles in Jurassic World, and the little ones have to be put to bed on time for school, and in general we just go on with our life as if everything was just fine, and its good to be busy, because you don’t have much time to think about it.

Alas, all this is thoroughly good for a man born of flesh, because there is something called anxiety and it’s a huge battle, that’s for sure.  One of my favorite verses is “Trust in the Lord with all your heart, and lean not on your own understanding, but in all your ways acknowledge him, and he will make your paths straight.”  That one never gets old, or goes out of date, or finds itself out in fashion like dresses from the 1920s.  It is always relevant, in all types of situations and all through life.  So, the thing is to “Trust in the Lord with all your heart,” and that I will do!  The good news is that He knows, and oftentimes I just throw up my hands and say, “You figure all this out.  I can’t.  Whatever you pick for me, that’s fine!”  Ones will is crushed, and then there is peace.

The Day Before IT Might Have Happened

(Written Oct 14, 2015)

This is the day before two hugely important dates:  my 55^th birthday and my biopsy.  Both happen on October 15^th, my birthday!

About being 55: my parents informed me recently that I am now a senior citizen.  I didn’t know that.  Well, I knew you could retire at 55, and that at 55 you could join AARP and at 55 that you could get discounts at restaurants and such, but I never put it together that 55 meant senior citizenship, with all that that entails.

Me a senior citizen.  Wow!

So afterward I was kidding Angela that she was married to a senior citizen, but she’s not far off at 53, so she doesn’t have much to say.

About the biopsy: that’s earth shaking.   Or could be.  If it’s cancer, I could be back in the cancer world, dragged in there against my will again, also with all that that entails.  Two things:  it’s in the middle of my lung, not the outside, so it may not be related to the spot that was removed in January, so that’s bad.  Another metastasis, and where there’s one (or two) there’s more, usually.  Two, it’s grown, from 6 cm to 9 cm in two months.  Three – and I only gave myself two but since I control the blog, am now affording myself more – my doctor was concerned, and when he’s concerned, I’m concerned.  And four, it doesn’t look like cancer, which has tendrils often, but is more of a blob, which is good.  At least in four things, there’s one good thing.

If it is cancer, we might be able to blast it with Cyberknife, which is five:  can they blast it with radiation, as I’ve had tons in 2007 and you just can’t keep blasting, as lung tissue fries easy.

Then six:  chemo didn’t work well in 2014 at all, so that may not be effective, which doesn’t leave a lot of options.

Then seven:  one option probably out is surgery, according to my doctor, and I’m not sure I’d even want this.  I’m replumbed with tons of scar tissue, the remnants from two operations, and with a boat load of radiation to the area, and besides all of this my doctor said an operation may not even be feasible:  lung tissue may not be able to be deflated and inflated a second time, besides everything else.

So I might be in quite the situation – and on my Introduction to Senior Citizenship birthday – so I hope I get more of these October 15ths!