Acceptance. :(

It's here.

Breathing has become difficult for Terry, and he cannot change from a vertical to a horizontal position without help anymore.  A huge lump appeared in his neck and now it's visible to anyone who looks at him.  His 'muscle pain from coughing' is more likely the ache of his pelvis, spine and ribs riddled with tumors.  That cough? It is now deeper, throatier and very difficult to stop once he gets started.  We do all we can to prevent him from coughing, as soon it will bring up blood - and it could bring up large quantities of it.  It is here.  The end is approaching and now we both know it. 

This morning, just now, I buried my face in his armpit and breathed him in for all I was worth.  I cannot imagine waking up every morning without that warm scent and feeling of completeness as his arms envelop me.  I've recorded an hour of him snoring.  I've made a thousand mental snapshots over these sleepless nights, and hope I remember every one so that I may replay my internal movie whenever I like.  I am not angry or determined anymore.  I am not even hysterically sobbing-kind-of-sad.  This is a whole new kind of sadness.  It is a quiet and heavy ache from somewhere deep, making each moment exquisite.  I miss him so much already.

Take a bow... 

Saturday night we went to a steakhouse to eat and enjoy the music of Harry McGraw and his band. Terry took two bites of plain chicken breast and pushed it aside.  We had the food boxed up and made a hasty retreat.  We had planned to check out the final show of our friends - and Terry's former band - the Switch, but he grew strangely distant when we got in the truck.  We sat for awhile, then he turned to me with tearful eyes, saying, 'I'm suddenly just so sad.'.  We cried together and I eventually decided we needed to bid the band goodbye before they go their separate ways. We drove there, clutching each others' hand solemnly. . Many of our close friends and fellow musicians were at the bar, and it hit me that this was Terry's farewell.  We hugged and spent a few minutes with each friend, then danced to Journey's 'Don't Stop Believin' before waving goodbye. You never know when it'll be the last time you do something, but we knew.  Unplanned and unspoken, we both realized on the ride home that it had been Terry's curtain call.

For public consumption

I'm getting ready to post what will probably be the last of the 'sunshine and lollipops' entries on Terry''s status blog , and I don' t want to.  Goddammit.  I don't want to hit publish and turn to full time acknowledgement that he is nearing the end of his young life.  I don't want to take this step, Lord.  Please tell me that I don't have to.  Tell me that you'll spare him and I'll give up every single vice... anything.  Whatever you want me to be, I'll be it.  I have been listening with all my might, searching every corner for some kind of sign.  Talk to me, creator.  Speak, universal energy; I've got my ears on.

He wants me to make a doctors appointment, as he suspects there is fluid in his lungs.  Really?  Yes, love.  There is fluid in your lungs.  Soon there will be fluid around your heart if it's not there already.  That isn't muscle pain from your constant cough.. it's probably a crop of bone lesions that are busily invading your rib cage. And speaking of that cough, you can blame that on the tumors in your neck and throat.  Shortness of breath is a direct results of your lungs' inability to store the air you are trying so hard to draw, thanks to a host of tumors that took up residence over a year ago.  I'm sure they are healthy and pleased to be surrounded by their own prolific offspring.

Yes, your appetite is healthy, dear.  Really means, honey, you can't get enough to eat because you are eating for two... hundred.  Thousand?  I don't know, but cancer is hungry and every bite you take feeds it.  I have found another cancer expert with the University of Arizona, and managed to get us in tomorrow morning.  I know it will be as fruitless an effort as all our other consultations, but I cannot sit idly by.  I'm afraid he's going to be caught up in my need to do something.. anything.

I hope he can enjoy one more Thanksgiving, Christmas and New Year's eve before he begins to fail.  I hope he can begin to accept and acknowledge what is happening in his body so that we can maneuver him into a calm, peaceful state of mind.   I hope he will give himself time and find the courage to say his goodbyes before it's too late.  Most of all, I pray to God almighty that he will have mercy and minimize his suffering.  

Please Lord, hear me.  Yes, I am angry with you.  No, I don't understand why you haven't heard my prayers or his - why you have chosen not to answer us in any way.  Why there hasn't been one single solitary bit of positive news or reason to hope...You have our complete attention.   Where the hell ARE YOU?? 

Oh my God.  Here it comes, and I don't know if I'll be able to contain the flood of emotions welling up inside me.

Depression: Living on the brink

The Brink. 

I hate the brink.  Apparently, humankind hovers there. The next big breakthrough in science, technology, sustainability and, - yes, medicine - is just over the horizon. How on earth would we know?  If it's true, why aren't we pooling our collective brainpower and pushing ourselves over the edge?

I think I no longer believe that we can expect breakthroughs that will drive us ever forward.  Not that we aren't capable of it.. Lord knows we are. 

Rather, we forgot how to work with each other to serve the greater good.  Our individual agendas and  self-imposed regulatory roadblocks make the pursuit seem pointless.  More than likely, the truth is that we, in general, do not care.  Until it's in your lap, it's someone else's worry, barely getting our attention.

All scientists: stop what you are doing and concentrate on cancer until we get it right. Every single one of you.  Teacher, intern, student, retiree...  just get to work now. 

Ants. Ants know how to get shit done.  Ants are better people than we, and that is a sad state of affairs, fellow humans.

I can't shake the feeling... the certainty... that the answer is out there. So many conspiracy-crazed people claim that cancer's cure will never surface, thanks to the enormous profits generated by myriad treatment methods and drugs.  Really?  Are we so far gone??   It's tough to remain idealistic in the face of this logical and disgusting assertion. It's nauseatingly feasible.

Can't the universe make one little exception? Bestow upon me the secret and I'll use it to save one lovely and deserving life.  Okay?

Please. Oh please.  : (   

Acceptance: the concept of letting go

Acceptance is happening all around me.  Not on the big issue(s) but on ancillary ones that might just be a path to the big 'A'.  Really, it's a forced exercise in letting go of our preconceived notions, of our visions for the future, of the unimportant causes we've elected to champion along the way, and may have become more habitual than relevant.  

Either way, little 'a' moments are popping up from every direction, and I'm learning to let go of the idea that anyone can influence anyone else's ability to accept life as it is.  

We won't be having a lot of frank discussions about preparing for the end of life, save the necessary documents and estate planning.  We just keep on keeping on as if everything is normal and we have years.  

These are the good times, and it's time to enjoy them.   : )

Bargaining - the little big things

What's it going to be?

So what would you do?  Seriously.... really think about it.  I used to say things like 'I'd cash it all in and go to Fiji'  or 'Go to Italy and work on a farm', and I meant it.  But not really.  Truth is, I would stop reading scans, cancel all doctor's appointments and buy some Donald Pliner boots and a case of fine red wines. Then I'd probably come hang out with one or several of you and just gypsy around until I couldn't. 

Our oncologist finally said the words that echo our original diagnosis, and it's happening.  Now.  Lots of marijuana, essiac and herbal remedies lie ahead, but I feel like Terry's faith in any therapy is halfhearted at best.  He says 'This has to work' as if he's threatening a consequence. I guess he is. 

It's the 'Or else!' must become a possibility in both our minds before we can discuss it.  My attempts to talk about what a good death would look like for him have been thwarted, and I get it. But it hovers like a pregnant storm cloud and I'd rather have an umbrella over both of us when it lets loose.

Negotiations

And so we bargain.  A bowl of ice cream.  A break from the constant haze of pot intoxication. What movie we watch (he may never watch another documentary) and what therapies we will or will not try.  We bargain about what dinner will consist of, who will cook what and what method they will use.  

He did finally speak to Samantha, telling her that she needed to figure out how to pack some of her stuff and bring it to our house for the weekend rather than opting out in order to stay with 'her stuff'.  I'm glad he did, and hopes she grasped his real message.  It was more of a command than a negotiation, however.  She did respond by informing us that we will be without her again this weekend... it's homecoming, don't you know?  

Sigh. We all miss her presence.  He tries to shrug it off, but he misses her awfully.  My negotiations with her mother seemed fruitful at the time, but I can now see that I lost in bargaining about how to approach the kids about what's going on.  As the non-mom, it looks like that might be my fate going forward as well.  I literally have no say, no rights, no place if that's how she wants it.  I'd hate to have to wait til they turn 18 to be in their lives.  :(   

As for bargaining with T, I'm giving up lots of ground these days.  He's won many negotiations that never even took place except in my mind.  Yes.  He's a control fiend.  He deserves to feel that he's still in control of some facet of his life, and I can help foster that at times.  Picking my battles is keeping me grounded.

Still crazy

Don't worry, I'm still myself.   Proof: I am wrestling mightily with a strong urge to put up every single holiday decoration we own.  Yes, all holidays at the same time.  It just seems like a thing I should do, but I don't want to set off any alarm bells.   

Then again... why the hell not?    

Depression: Ignorance = bliss.

So, ...would you want to know?  

A dear friend of mine died recently, and I attended his wake before his final journey to his hometown where his body will be buried. Jim Richards died way to soon (only 56 and in great health) and everyone was shocked and deeply saddened for sure.  The conversation about his life has been punctuated by comments regarding the way he died: Went to bed on Sunday and just didn't wake up.  That's got to rank pretty high on the list of preferred ways to go, right?

There is no way to know what his final moments were like, but it's nice to imagine that there was no suffering or fear.   If there was, it must have been acute and short-lived.

Terry and I are on the opposite end of the spectrum.  They call it 'Anticipatory Grief', and until I experienced it, I never could have imagined the prolonged and devastating nature of knowing about your own death in advance.  It feels like an endless parade of tearful moments intermingled with stretches without tears - always knowing you're just one millimeter from a full-blown weep session.  Every opportunity for an emotional sucker punch is now also an opportunity to lose control in completely inappropriate settings.  All movies seem to be about death, or have a scene that brings that elephant back into the room.  Movies are less appealing right now for sure.

Anticipatory grief gives you a chance to 'get  your ducks in a row', which is good from a practical standpoint.  Terry and I will visit the cemetery to pick an above-ground 'companion crypt' (never mind that I will be cremated and tossed over the ledge on the Moki Dugway ) in a couple of weeks, which ought to be a real gas.

It's confusing to me that he's willing - even driven - to tidy up these details, but will not discuss how to have a 'good death' with me.   Yes, hard.  Yes, totally critically important.  This is the most important thing we can do... to do right by him and to make everyone's memories as warm and meaningful as possible.  

Acceptance: How many, exactly, are 'several'?

Truth:

Our Oncology team has been soft-pedaling the truth with vague terminology and gentle-speak.  Last night, we returned to the ER at Mercy Gilbert to address some chest pains Terry was experiencing.  They investigated a potential blood clot in his lungs by way of another CT scan of the upper thorax.  He rested for about an hour while we waited for the scan results.

Good news: 

No blockages or clots, no obvious issues with his pancreas (apparently the giveaway for pancreatitis or pancreatic cancer is non-stop vomiting, eesh.) or gall bladder.  Since the pancreas is likely to be the next (last) organ to be infiltrated by new lesions, I was very relieved by the findings, as was T.

Back to the truth:

The radiologist on duty reportedly freaked out and ran the report back to the doctor, not having read Terry's history.  He  thought that perhaps we were unaware of his metastatic disease.  

After the report circulated, the entire medical staff then proceeded to stop into our little curtained corner to say 'hi'. ... A bit obviously. Their demeanor had changed from preoccupied to visceral concern and/or pity.  Terry became the star of the show, sadly, but we were treated like royalty.  "How about some morphine?", the head doctor urged. We accepted.

Since the ER medical team isn't in on the big secret of 'several', they simply handed me the scan and lab results.  Now I know how many 'several' is.  Check the third paragraph.

So there it is.  Six months ago, there were three.  Today there are too many to count.  Jesus. 

Acceptance: No news is good news 

Unfortunately, Terry read the report too. Fortunately, he was not deterred by it.  It did list his newest osseous lesion (bone: T12), but we suspected that from our scan in June.  It is probably good that the page with the liver tumors was omitted, though.  We'll know soon enough.  

Today he took his son with him to the studio for some additional guitar work, and I'm going to be late for my scheduled vocal time if I don't go now.  Just wanted to get this development down for those of you who are following and love him. 

I'm guessing that the number of folks who love Terry is.... well,  Several.       

Acceptance: Give a little bit

So, we have adjusted our combined expectations when it comes to Terry's treatment goals. He will reassess treatments and lower dosage amounts to levels that can inhibit the growth and spread of the tumors that currently exist in his: 

Head & Neck

Lungs

Liver

Pelvic bone

Lymphatic system

Additional nutritional changes and doubling our cannabis efforts to include THC is a realistic and sustainable approach that should render any treatment tolerant as opposed to debilitating.

Additionally, I have found several options to treat or mitigate the neuropathy that threatens his fingers; ergo, lessens his ability to play guitar.  

Dr. Tsai had a very telling demeanor today during a consultation that followed Terry's blood draw. The discussion now involves halting chemotherapy treatments, and soon.  Terrifying.

Once traditional chemotherapy stops, we can resume Essiac tea, liver boosters and other naturopathic remedies - perhaps his immunotherapy injections (Coley vaccine) as well. 

Anyway, amigos.. I guess I won the bargaining session.  I won, so why don't I feel like I won?  

I will have to accept this truth: All decisions are shitty from here.

Anger: Young & entitled = heartbreak now, regret later

“What separates privilege from entitlement is gratitude.” ― Brené Brown

Anger.  Yes.  Anger was most definitely the theme o' the day today.  Where Terry and I have come to a place of connection and frank discussion based in reality (still working toward that realistic goal reassessment), there are two people that can wrench both of our hearts out completely, and they are his children.

Samantha has chosen to stay at her mom's (presumably upstairs behind her closed bedroom door) the last three days that we were supposed to have both kids.  I am flabbergasted that this is even permitted, but Terry has chosen to give her some space.  Honestly, I just don't think he's got the energy or will to discipline her or force the issue.  She has been hostile more often than not, and I'd rather not have her than deal with her hateful behavior, but it hurts Terry deeply and she is sorely missed by all three of us.  I'm really hoping that her mother is making an effort to talk to her about her feelings and will help her through this.  My efforts have been rebuffed.

I know she's been researching cancer, and probably knows a lot more than just what we've told her, but she refuses to discuss Terry's declining health with anyone.  She claims to be 'so stressed' or points to her full schedule to justify her absence, but I suspect that she is angry/scared/in denial about her dad and just refuses to acknowledge her feelings.  She is avoiding him, and right when he needs her the most.

Chase had been really engaged and sweet up until recently, even checking on him as he recovers from treatments and lending Terry all his stuffed turtles (a big sacrifice) to make him feel better. One time, he spent about an hour right by his father's side as was on his knees in front of the toilet, vomiting.

Man Up.

But now, it appears that he is growing more distant as well.  Both kids have to be pissed as hell, upset and scared.  I think it's partially because they have lived such privileged lives thus far,  but the other part is because we have not talked about what is really going on. It's the elephant in the room, and we need to address it.  Everything - gently, kindly and even creatively, but it's time to put it out there.  If, that is, I can get Terry to acknowledge the truth about where we are at AND get both kids to sit down and talk about it. 

They are so young, and I'm just realizing how very much I love them both.  I'd do anything to protect them from the intense pain that accompanies the premature death of a parent.  Especially a parent who is so wholly dedicated to his children as is Terry.  His love for them is nothing short of fierce, and if I'm honest, it's one of the reasons I fell in love with the man.  But how unfair is it that I will see them graduate, marry and have their own families while he will not?

I love this quote and will leave you with it:

You have to do your own growing no matter how tall your grandfather was.” ― Abraham Lincoln

Bargaining: Revising the goal

Go, Fight, Win!

What once was our singular,  non-negotiable, only acceptable outcome was a clear scan and a  pronouncement that Terry is cancer-free.  Cured.  Healed.  Also acceptable: complete remission.  We put our heads down and charged toward this finish line with a decent amount of commitment and gusto. 

On second thought

Revision, at this point, will serve us better than fantasy.  In recent discussions with Terry, various doctors and God himself, I've adjusted my request to better reflect reality.  The combination of therapies we are currently undertaking is particularly brutal and it's obvious that no human being can tolerate endless cycles of toxic chemotherapy.  As we approach the end of our fourth round, I can tell that he will eventually refuse oncology treatments; and probably soon.

His ashen complexion and frailty are obvious, and are the unavoidable result of the oncology treatments.  Chemo is purposeful poisoning, and that is a fact. It works for millions of people who have cancer, and often gives those patients a whole lifetime of cancer-free living.

Herein lies the rub.

From the very beginning, we have been told that we will not be one of those aforementioned folks for which chemotherapy and radiation can work.  I want so much for both of us to unhear the words of our surgeon at Mayo Clinic, "You will not die of parotid cancer, you will die of lung cancer.  Perhaps you have a year to live at best.  This cancer moves - and quickly.  It is highly aggressive and does not respond well to chemotherapy.  Understand that chemotherapy will only improve your quality of life, not extend it.  Surgery is not an option for you, and you should get your affairs in order." 

With that bit of information, why would we continue to subject him to the torture of chemo?  Two things come to mind: Samantha and Chase.  If he could have another year or two by continuing chemotherapy, there would be no question about continuing.  Every single medical professional we've seen, however, agrees with our initial prognosis and so far the scans bear this out as well. 

All in: Betting on Cannabis

There are no statistics, no clinical trials, no human studies... only thousands of anecdotal, firsthand stories of miraculous triumphs over cancer using marijuana.  I've spent the past two months exploring every aspect of medical marijuana's efficacy on cancer cells, and you cannot imagine how many facets there really are.  Regulatory issues, various strains, compounds, delivery methods and hundreds of home-spun regimens are freely available for your perusal.  Every day this burgeoning industry makes huge strides toward long overdue medical legitimacy.  

At present, however, it's the wild west out there.  We've chosen to pursue Rick Simpson's approach to cancer treatment, which will be discussed in many future posts. The idea, however, is to get 60 grams of super-concentrated hemp oil with the highest possible CBD levels into Terry's body in a 90 day period.  For now, suffice it to say that we are on day 45 and have managed to flood his system with approximately 42 grams. Is  it working?  Sure. It just has to be, doesn't it? 

In summary: Bargaining for a realistic outcome 

Pie in the sky is probably delicious - when it falls to earth.  I've never heard of anyone having their share of sky-pie, and you haven't either.  Why?  Exactly.

On this day, I bargained hard.  Not with Terry or any of our doctors, but with God.

 My pitch:  I will revise my expectations to better serve all relevant parties in this troubling situation.  I will work toward mitigating the angst of Terry's children, both of our parents and siblings, close friends and the man himself by refocusing on managing cancer with cannabis and strongly suggest exploring a low-dose option or entirely stopping chemotherapy along with lowering the frequency of scans in the future. Less monitoring, more living.

Also, Lord, I will fold the laundry neatly and put it away once I figure out where everything goes. I will begin volunteering at Feed My Starving Children regularly and renew my efforts to find a worship service that really speaks to both of us..  I will meditate every day and re-commit to an exercise routine without interruption.  I will keep up on my written thank you notes (and work on improving my penmanship) and reduce my daily cheese intake by half.  

On your end, I would like to receive some reassurance that there is a way to manage Terry's cancer as we would a chronic condition.  If complete remission is a fantasy, then please slow the growth of his existing tumors to a crawl, or better yet, stop them in their savage, greedy tracks.  We will faithfully administer ridiculously high doses of RSO and implement a new daily vaporizer/oral THC regimen.to give his body the tools to do this work.  Please fully permit the medicine you provided for humans centuries ago to do its healing work and stop the progress of this cancer. I would also appreciate liberal increases in my capacities for patience, courage and wisdom and inter-family communication.   

So, is it a deal?  Good. I think it would motivate greater effort from him to think of his cancer as manageable instead of waiting for a miracle while wasting away in the high-dose chemo chair.

PS.  If a complete eradication of all traces of cancer is in the offing, I would go BIG.  Just name your terms, Lord, and I'll meet them. 

Now that would be a bargain!  

To blog or not to blog? Curse of the Caregiver

 'It's the most aggressive type of cancer.'

 said the world-renowned head and neck surgeon at Mayo Clinic.  "It's rare: salivary gland adenocarcinoma in situ.   You have one year to live.  You should get your affairs in order."  With that, he turned and left the room, followed by six students scribbling in their notebooks as they trailed after him.  Only one bothered to look back at us with a sorrowful expression.  

"Did he just say that?" Terry asked me, and I suddenly realized that both of us had sunk to the floor on our knees upon hearing the news.  Stunned silent, I shuffled closer to him and gathered him into my arms and we wept together.  I do not know how long we remained in that room, locked together in utter shock and grief.  I do remember feeling like the elevator ride to the ground floor took an eternity and that everyone in the various waiting rooms and lobbies seemed to be staring at us as we left the building.  Puffy faced, red eyed and tear streaked, we were an obvious mess.

There's no good way of delivering news like that, especially to an otherwise healthy, vibrant 48 year old man with two young children at the peak of his career and enjoying life.  I did, however, expect a lot more from a renowned surgical specialist at the world's best teaching hospital. One week earlier while reviewing MRI results, this same man had scheduled us for surgery on Christmas Eve, assuring us that these things were always completely benign and operable.  'There's no point.  He's already stage IV.' said the surgery scheduler the following day as he handed me a sheaf of new medical orders:  Nutritionist, orthodontist, phlebotomist, radiologist, oncologist.  Oh, and a psychologist and a social worker.  It was the first of many, many lessons for both Terry and myself, and marked the end of what had been an idealistic existence. 

  I'm still grappling with what it means to be a 'caregiver', but I believe I'm already a better person for the experience thus far, and that I'm a pretty damned good caregiver. I suppose it may be many years before I can look back and adequately judge my ability as a caregiver, and I refuse to look up the definition of the term as a comparison.  I really don't care what conventional wisdom thinks a caregiver should be, and this is what I've cobbled together based upon my own experience:

Patient advocate and healthcare champion.  Avid researcher and pesterer of practitioners.  Scheduling and appointment coordinator.  Pharmacy liaison and delivery boy.  Director of dosages/drugs.  Treatment coach and insertion specialist.  Creator of strange comforts and distraction techniques.  Evaluator. Bitch. Warrior. Doormat. Constant. Trusted servant. Sucker.  Washer of endless dishes and laundry.  Emotional conduit. Peacekeeper. Keeper. Sugar cop. Negativity deflector. Guardian. Shepherd.

I expect there will be a great deal more to add along the way.

So, on the day I decided to blog about my experience caring for Terry I had been in the line of fire for many consecutive days, then weeks. Hell yes, he is pissed off as well as sick and weakened and scared. He understandably turned all of those feelings into a laser-accurate stream of hate and anger.  Being the closest (and easiest) target, he took aim and made me its recipient.  Foolishly, I attempted to absorb the vitriol for much longer than I should've.

And then, we had a moment...

At my breaking point, I scheduled a meeting with a counselor. Terry had an epiphany, really.  It was a long time coming, and afterward, we just melted into each other.  We fused together like RSO and cocoa butter.  (For those of you who aren't familiar with the world of medical cannabis, RSO is Rick Simpson Oil.  I will elaborate in future posts, I'm sure.) This moment brought me to this post and a new need to record my thoughts going forward.



Most of us are familiar with Elizabeth Kubler-Ross and her five stages of grief model.  I have chosen to write under the following headings, as every day seems to feature one of these themes:

1. Denial
2. Anger
3. Bargaining
4. Depression
5. Acceptance



Curse of the caregiver will continue to be the name of this collection of posts for reasons that are my own.  It should be known that I do not consider it a curse, rather it should be seen as a mixed blessing.  I am so grateful for this time to draw closer, to be needed, to rise to the occasion and to champion the cause that is Terry Williams' life.

May it be a cathartic, meaningful journey that brings us ever closer.  I want to feel every single exquisite emotion deeply.  Whatever is to come, I am fully present, and I don't want to miss one single minute.