Jul 03, 2013 - 10:27 am
How am I supposed to feel now about Recurrence #4?
How would anyone feel if it were them?
I believe the operative word when I broke the news to the community was ‘stunned.’
That’s certainly how I felt...
It felt like the classic sucker punch. I was finally getting to break the long awaited news of getting approved for the magazine article. And it didn’t mean anything to me until I could tell you about it.
That was a Friday….
By Monday, I got the first hint of things to come...and was so stunned, that I just had this compelling need to get with my folks fast.
I’ve thought about this the past few days…and with all of the upcoming appointments (now scheduled) and phone calls etc. etc, talks with my wife, talks with myself……I’d say that stunned has now morphed into Shock.
It made me think to what Steved told me the other day, when he essentially asked me where my emotions were at?
This morning, on the way in to work, my thoughts drifted back to the movie Hamburger Hill, circa 1987. The battle was being fought in the Ashau Valley. During one of many bloody assaults up the hill, there was an explosion.
As the smoke cleared, a soldier was calling out on his 2-way radio to give their location and request assistance. Calm and cool, the soldier was transmitting and receiving information.
Then, a soldier walked up to him and took the phone out of his hand and said, “Sir, your arm is gone…”
That was a classic story of Shock and how it operates…
I’m thinking that’s probably much of what I was going through in my first transmission out to you. I keep a pretty level head (mostly), but there are times when news can overwhelm even the strongest of dispositions.
Once Shock begins to wear off, we begin to enter a new realm of Awareness. It’s the transitional period between Denial & Reality.
I’ve never truly been in denial…but this time, I think what happened was on some kind of cognizant level, I understood the situation up to a certain point that I would allow myself to understand.
But then, there is that part of the brain that only allows you to absorb so much at one time. Any more overload than that can crash our systems and send us spiraling to the bottom.
So, just below the surface we find ourselves not denying – but Not Accepting either.
As reality permeates the outer dermis to your soul, the sediment begins to settle…and from there, your fears and apprehensions begin to take root in the past – a past that you wanted so badly to forget ever existed.
It can chill you to the bone, because, IF we acknowledge its existence – then it becomes real. - sometimes too achingly real.
It’s all just a part of the evolving process that finally gets our mind meandering towards the Path of Acceptance, where we eventually have to find our footing once more.
As a long-term active fighter, I know that I’ve talked a good game and set the bar pretty high for myself. I expect a lot out of myself and folks accordingly, expect a lot out of me as well.
In a lot of ways, I felt like I let the community down in a big way with this recent news – and in the process of doing so, I felt like I had stuck a dagger into the heart of Hope.
I get Hope through watching other’s stories and their examples. And there are probably a couple of you out there, who have watched my struggles and have derived something from that at one time or the other.
When we see Longevity take a hit, it sounds that audible alarm within each one of us that shatters the pre-conceived illusions that we created to protect ourselves in the battle.
When a fellow soldier ‘falls’ or lays wounded beside us, it can’t do anything but make you wonder…about a great many things.
It is one of the most sobering inventories there is to take…because, immediately you run your own assessment of your own situation and compare that to the person whose news broke.
In a lot of ways, it can make your blood run as cold as ice water….
And, that’s because you don’t like what you see…you don’t like it for that person…and you don’t want to face that prospect for yourself – either as patient or caregiver.
It’s completely normal….
Reality Checks are the barometers we use to measure the constantly changing pressure patterns that comprise our lives.
Tragic events always act as the human compass that we use to gauge where we are at within our own existence – which we then use to measure in our own relational context to that of another in a parallel situation.
From there, we look for similarities and patterns that might mirror our own…and while it still frightens us to look at – in some strange way, it provides comfort as well.
It provides comfort from the standpoint that you are not the only one experiencing it…somehow, through the struggle of others; we find that common chord of humanity that resonates within each one of us – and binds us all together like no other form of human endeavor ever can.
Because, it speaks clearly to the fears that all of us have…
Enough philosophy – let’s get down to business…
Well, I talked to the onc by phone and personally, I didn’t necessarily like what I heard from him.
He said to worry about the liver….and not to worry about the lung…or the spine.
Let’s start with the liver then…
Now, I had mentioned that there were options available at my facility…and there are….and that’s good news for cancer patients in our area. However, my available weapons of choice appear now to be quite limited.
The reason for this is my liver itself….I’ve got NASH – which is non alcoholic steteohepatitis. Within that conglomeration of terminology, I have stage I fibrosis.
This exacerbates an already difficult situation with regards to treatment options.
I was fortunate to escape the liver the first time….when they opened me up the first time, they found all of this and my surgeon concluded that an 80% resection would kill me on the O/R table.
So, he switched over to RFA…and I had to do Cyberknife radio surgery behind that to get locally clear.
So, RFA was all I had then….the gold standard of resection was out then….and it’s out now….my liver just (ain’t) gonna’ take it…
They all told me that I would have cancer back in the liver within One Year – guaranteed!
Well, we made it 5 ½ years clear in the liver…
Having talked to my onc, he now feels that even RFA might be too much of a shock for my liver to handle. I got a call from the radiology office informing me of an appointment I knew nothing about (next week).
That leads me to believe that the consensus now shifts to SBRT as the planned methodology of attack. I’ll have to gather more data when I confer with him.
Onc said he’s ready to take out my spleen…
I told him that lends me the impression that he is thinking of re-introducing the Oxy….the oxy heavily compromised my body’s ability to produce platelets at a level of recovery that matches pace with Oxy’s ability to destroy them.
I told him I’d do Folfiri again, before we go back to Oxy….
I’m really dead anyway (at some point) and I can’t live with the severe burning and tingling 24-hours a day….and besides that, it’s not really going to work in the long run anyway.
Then, I’d have progression and extreme sensations…..just can’t see putting myself back through that, when I was so fortunate to walk away with only some residual damage….though it continues to get a little worse each year…as bad as it’s been, now 9-years from last transmission.
All that aside though, he said that removing my spleen with an abnormal liver condition that I have could lead to serious complications, but he was going to talk to a GI surgeon. Under normal cir***stances, for most folks, that operation is not all that serious and folks do well.
What separates me is that I’m fighting a 2-pronged attack in the liver…..metastatic rectal cancer + NASH stage I fibrosis liver……I simply may not have enough to go around with my liver, is the early report. I’m already feeling some twinges of pain in the liver area…
We may have to lean on SBRT to fight with…and hope there is some buy-time there. .
Now, onc said not too worry about lungs and spine…
There’s evidence of metastatic activity in the pleura of my lung again….and there’s metastatic indications around the L2, which they report could be lumbar…or the entire spine itself.
That’s got my attention….
Now, I get the fact that if we can’t stop it in the liver, then they won’t go operate on multiple locations. However, I still really don’t get that, I think they could attack in multiple areas – what is there to really lose at this point?
Here’s the thing…
Over the last 8-9 days, I’ve developed increasing pain in my lung whenever I try and breathe too deeply – sharp stabbing pain – the kind that makes your face wrinkle all up.
Breathing is shallower now, because it hurts too bad to inhale…
It’s been like that since my second lung surgery….all of the scar tissue from both surgeries (7-wedge resections) and the subsequent 10% they destroyed with the radiation has left me short of breath and in pain on a daily basis.
But, this is different…a different feeling….and a different kind of pain sensation.
It takes me right back to where my last fight started…for fight #3.
It was in the pleura of my right lung as well…it had grown to a point where it had imbedded itself deep into my rib cage…and began compromising my breathing and left me doubled over in pain, gasping for air…but it hurt to breathe in.
Now, it gets better…
The tumor was also right up next to….the spine…my surgeon had to stop short, because any further action, he was afraid of risking paralysis.
He sawed out two ribs L5 and L6, I think….and at the time, they biopsied negative for cancer….which was a huge relief….nobody wants it in the spine…..that’s a one-way trip….and I know it.
So, let me add this up…..hmmm, increased pain in a short time in the pleural area of the lung….a little bit higher up than the previous version…
We have strong probabilities of metastatic disease in the spine…..where the last tumor was so dangerously close to that the surgeon could not risk operating any further.
Hardly…simple mathematics really…
But, I’m told to not worry about this….only the liver.
Sorry, but in another week or two’s time, I’m going to be hurting even harder. The last couple of nights, I’ve been forced to the Tramadol, to try and ease enough pain to fall asleep.
And I’ve also been having terrible lower back pain for the past 7-months….the kind of pain that drives you out of the bed – and won’t let you sleep in – because, you physically can’t.
This is in the area of the original rectal radiation, but either’s it’s degenerating further…or there might be metastasis there…..they indicated lumbar and/or entire spine.
But, let’s not worry about it…..good grief, what are we paying these guys for?
So, this looks to be a very serious situation…and I bet would be some kind of fight to boot.
I wasn’t satisfied with my onc’s assessment of my situation….so I decided to take matters into my own hands and dial in a few relationships that I’ve fostered up there.
So, I put the call into legendary cardio/thoracic surgeon, Dr. D. Actually, I went through his PA, but she’s cool and will give him my message. I explained to her what I’ve explained to you.
I asked her to have Dr. D. please review the recent PET/CT scans along with the accompanying medical report and give me his expert medical opinion….and I said, I’m ready for a VATS or an exploratory surgery right now.
The pain is getting that bad….
I’m pending a reply back from her….might be by phone, or I said I’d come there for a consult.
I’ve never met a pain killer that was worth a dam for killing pain…not the kind they dispense like PEZ…hydrocodone or percoset….at this rate, at some point, I would need something that might work…like a Fentanyl patch or something.
And I’m having to work still and keep a straight face and hide the pain and not let on at work that I’m in pain…..I can do that for awhile, but last time, I was doubled over at work and folks were talking.
They didn’t care….just talking….even my boss, he magically never sees anything, until it’s time for me to make my announcement. And then he’s pissed I won’t be here to work the projects.
People usually get tired of you having cancer after the first time – the novelty of it all simply wears off.
Also of interest, my surgical onc has now reassigned me to another surgical onc…
Now, in some way, that makes you feel kind of funny – like they don’t know what to do with you and just toss you out to the curb…..that’s the feeling anyway.
I did some research on the guy and it looks like his oncological specialty is with the liver – so that’s probably why they moved me over to him. This might be a good thing, but just new and unknown until we can establish some kind of a working relationship.
Profile says he is patient based and relies on a good rapport with his patients….so, I’m approaching this change with an open mind.
Right now, I’ve just go an appointment set up him…..and then two weeks further down the road, I go back to radiology…back to the guy who radiated my lungs….according to my onc, his approach is a little more aggressive than the next guy.
I will be hoping to hear from my lung surgeon’s office about a consult to go over this…or a phone call so I can hear what he thinks….I value his opinion and he’s the #3 rated cardio/thoracic surgery in the entire DFW area, as voted by his peers.
He and I are Team Da Vinci….#1 Patient/Surgeon Tandem to do the robot surgery on the lungs:)
As I said earlier, part of us just doesn’t want to acknowledge the ‘realness’ of things until we have to….but when appointments start getting made, and you begin to think about leaving work….and wondering if you’ll make it back this time….or whether your liver can withstand what needs to be done….
Then, it gets all fuzzy and you become flustered and overwhelmed between regular life and the cancer world knocking on your door again….’real’ gets a whole lot brighter.
LindaK – are you out there?
Here’s another story for you. You know how I told you that we say things we really don’t want to say – but still feel compelled to say them?
I had some of that over the weekend…..all of a sudden, you were putting fertilizer and mulch down…..you get news that it might not matter…and then you try and focus on the business task anyway….because it needs to be done while you are physically able to do so.
And I’d slip and say something to her, like well, this will be my last football season…or are you going to miss me when I’m gone? Or, when I’m gone, we’ve got this done and all that you will have to do……
Part of me told you, that as men, we sort of do that as a test for our women…we’re really using you for our sounding board and we hope to hear the echoes of love coming back.
And I had indicated that it was because some of the guys did not get the mothering and nurturing they needed growing up?
Well, both of those are true….
But, you know why else we really do those things, Linda?
I feel it’s because by mouthing the words, it somehow takes the shocking sting out of the idea of what it will feel like to die – and leave all that we know behind. It’s sort of a mental exercise that we go through, thinking that it will help prep us for the inevitable.
By saying it in our moments of vulnerability, it becomes real to us and the hopes are that it lessens the hurt each time that we say it.
It doesn’t, of course…and still we can’t help ourselves.
Why are we scared to face death?
Because, physical life is all we’ve ever known…and death remains the great unknown….and unknown is always a scary proposition, even on our best days.
I’ve got more I could say, but that will be it for this edition….I’ve got ideas for a new slant for the next one.
I just want to thank everyone again for all of their love and support.
A couple of my relatives crawled out of the woodwork Sunday and Monday….we have not heard one word from either side of those families (my side) in over a year now…last we saw, they peeled rubber out of the restaurant parking lot following the funeral they couldn’t get gone quick enough.
No need to visit or anything…it’s just Craig. Let’s just do our obligatory duty and then get the hell out of here. Just show up and take a legal stance that “They Were There” for us, according to society’s definition.
I told them I was not in the conscience clearing business anymore…
I have forgiven all of them and had decided to just let them be and go on with their lives….if they haven’t caught wind of something, this wouldn’t be an issue, they would still be silent….but care about me. Oh brother.
I’m no charity case and when people show up just to ‘show up’, it leaves one feeling de-valued and worthless and not worth their time.
One of ‘em stalks this board apparently….and must have read my update and then over the grapevine, my wife gets a call from one of my aunts (she cops out and goes around me)….and then the next day, get an email from my uncle.
All of a sudden, they realize it’s been a long time since we last spoke – and we just wanted to see how your health is holding up?
If it weren’t so comical, it would be pathetic – actually, there apathy makes my blood run cold.
I set the record straight yesterday and said the things I needed to say – and I didn’t hold anything back. The Lion roared and told them the truth….and told them no further communication would be necessary and I didn’t want to talk to anyone at this time.
It’s highly unlikely now, that I will ever hear from any of them again….
So, all I’ve got for this fight is my wife, my dog….and YOU. And we’ve added the Lord now this round….along with Trust & Faith…two ladies whom I’ve never given myself to.
Somehow, I think a part of this fight will revolve around them…
I’m being tested since I turned it all over recently – my new faith is now being tested – I have no idea where we are going with this 4th recurrence.
Jen/Chels – you gals asked me to write a post about how I had coped with things through three cancers in nine years….rather than show you a re-run, why not watch my answer unfold as we move forward into something unknown for me.
It’s going to be much different than what I would have originally posted. But then again, things changed suddenly, didn’t they?
Outside of that family flare, we’ve done pretty good….staying busy at work….working hard at home….even harder now as we’ll have to ramp down at some point.
I just wanted to say that I’ve enjoyed this group of folks – and am glad you are here.
I am sorry that I let you down….part of me feels like I failed you. There’s a certain emptiness I’m feeling inside from that.
I just didn’t want to be the one that destroyed Hope – and when the room went silent after that quick staccato, I felt the heaviness in the air and knew that I had hurt some people – and I’m very sorry for that.
I wouldn’t have been able to hide it from you for long anyway…eventually, you would have figured something was wrong.
Obviously, I’m quite concerned and somewhat apprehensive about upcoming events in my future. Still a lot of worry, because we’re still fleshing it all out and making appointments, so there is a high degree of uncertainty there as a result until after those meetings.
I want to believe that these other areas would not be of concern…but noticeable SUV levels and increasing pain, loss of appetite now etc. etc. has got me wondering.
So, now I’m slowly accepting the realization (after this latest failure) that this will be life now – for as long as I have it. If I’m very fortunate, I’ll get cancer again….fight hard…return to work…and wait for the clock to strike midnight again…
It’s happened four times now….
It’s interesting, because for anyone that might remember, from the very first second that I stopped treatment; I told everyone that #4 was really already here.
I guess I’m just really surprised that it took this long ‘this time’ for it to return….
I’ve removed the word ‘Cure’ out of my vocabulary forever now….I think the pattern has become pretty clear….and I’m one of the lucky ones. There will probably be no escape for me now.
I might break loose….but doesn’t look like I’ll break free…we’ll see.
Of course, the story of my physical cancer has never garnished much interest with regards to my approach of it.
But, if we’re really paying attention…take a look at what you are seeing…
My story shows us all how even at an early stage, the fight can wage on for a lifetime…I was a IIb…then I moved up in class to a metastatic stage IV...and have been one ever since.
So, this is a tale of how quickly things can change and how quickly you can fall…and the role of being a metastatic stage 4 can be every bit as challenging as a dx stage 4.
I guess we can talk more later...if you want to listen…
All my love and hope to each…….