Life: The Crash Course Version

[My brother passed away from Pancreatic Cancer almost 2 years ago on December 20th. 2006
He was 38 years old. This is an entry from my personal journal]

LIFE: The Crash Course Version


"death and dying are the easy parts, it's life without someone that's
hard, the harshest... and as bad as this feels now, it is not the worst part..."


Saturday  April 29, 2006

JOURNAL ENTRY #6:  ORAL CHEMOTHERAPY


Some bewildered musings and deeper thoughts, one Saturday morning with my brother:

My brother Scott has developed his own scale of pain in a blog he
created. It differentiates between physical and emotional pain.
Consequentially, there are always two numbers-one for how he is
feeling emotionally, the second indicates how painful the
physical, the tangible pain is from the cancer that disrupts
and poisons his body daily...how much he hurts.

Today I'm writing about my own pain, as one who loves and cares for
him. How my brother's pain, anguish and befuddlement, as the impending end of his life draws ever near, affects me.
And yes, it is painful-- oh, so very much and in so many ways.

As of yet I have found no scale worthy enough, no barometer
or gauge I can go to or look at, that adequately describes the pain I am feeling.
I don't think I even want to. It makes it too real. Yet no matter
how hard I try to distract myself, the agony is ever present. It
follows and surrounds me like a dark ominous cloud.

We started the day with our new morning ritual;  a cup of freshly
brewed coffee in hand with me asking what he would like for breakfast.
Food is a sore subject--he has no taste buds and no appetite. So I
am learning to approach the topic delicately, respectfully, though at
times carelessly, in avoidance--as if his diet is of no consequence.
However, today was different.  He didn't respond in his usual way;
"Sheri, I've told you...I don't care what I eat anymore...if it
tastes good or not, even something I used to enjoy...Let me just get
something myself. "  Today, instead, he said, "Oh, I can't eat
anything yet.  Today is an oral chemo day.  I have to wait 20 more
minutes until I can take the chemo pills, then I can eat a little
something ... but then, yeah, something for breakfast would be great."

I was fine for a moment. Then this awkward silence descended on me.
Both of us realizing, simultaneously, that this one paltry response,
actually spoke volumes.  We never used to talk about cancer or
chemotherapy, but more significantly, we never spoke about HIS having
Cancer, let alone the significance of taking chemotherapy pills.  And
it is not even a pill that will cure him.  It is only a pill that may
prolong his life, hopefully, a few more months, if we are lucky.

Then my brother asked me, half joking, half to break the unbearable
silence, if it bothered me if he took "the pills"  in front of me?
Bothered me?  I could feel the tears begin to well up, my barrier of
courage cracking as I began to weep. I cannot recall my answer, all
of the words I spoke.  Only that they were feeble, at best, compared to
all that I was feeling. I answered, though hardly discernible, that
"yes, it actually bothers me quite a bit ... not that you are doing
it in front of me...just the mere fact that you have to take them at
all ...  "   "It just makes me so sad...so mad,"  and the tears
freely rolled down my face, like waves crashing onto the shore.

I discovered this poem as I was searching for an Anne Morrow
Lindbergh quote.  It attempts to express how and what I was feeling
during my Saturday morning session with my brother.


Fairy tales For My Brother


It seems wherever I go,
People come into my life and go out.
Touching me where I can feel,
Then leaving only a memory
Like the gossamer fairy tales of children easily forgotten.
And I wasn't through knowing them.

How do I know
Whom I am seeing for the last time?
How do you halt your life
To gather and keep fairy tales from losing their magic?

So come.
Brush against the walls of my life
And stay long enough for us to know each other,
Even though you know we will have to part some time.
And we both know the longer you stay,
The more I will want you back when you have gone.

But come anyway.
For fairy tales are the happiest stories we know,
And great books are made of little chapters.
-anonymous

This is my journal entry for today. The significance of watching my
younger and by all accounts, except for his having terminal pancreatic cancer,
healthier brother ingest oral chemotherapy, oral toxic poison, to steal a bit more life.

This is a journey, an experience that no one prepares you for.  There
is no rule book to guide me through my anguish and sorrow.  And so I
depend on the strength and comfort of my friends, partner, family  and
loved ones, to help get me though this.  Not for myself-- but so that
I can be of use to him as he becomes weaker, as I know he will.

What makes this so uncanny and peculiar is, I still find myself relying
and depend on him to assist me with the answers on “how to cope” and as a source of strength and balance,
which is one of the many roles he plays in my life.
Is this thoughtless, selfish? If it is, it certainly isn’t intentional.
Just what I've grown to expect; his wisdom and perspective,
in a life that doesn't always make sense to me.
I want and need to be there, for him.
Pretending this isn’t happening, behaving as if I've ever experienced anything even remotely like this,
is silly and disingenuous. Again, balance, I need to discover my own.
And yes, this scares me and I tremble at the thought.
Another reason for confronting and learning about what it is, what it will be like?
The process of losing my brother.

I will follow his lead.

Something else, another observation...As ill and weak as he is, knowing he will die soon,
and all of the thoughts and fears that come with that knowledge,
he still, as always, tries to shield and protect me from what he knows will be
my sorrow and anguish, the ominous hole of loss that his passing will bring.
The void that will become a part of my waking life. I can't even begin to imagine.

Scott has not lost, and will never lose his "magic."
His importance in my life, if anything, is even more penetrating, alive and prevalent.
The thought of losing him is the most unbearable pain I can think of.

But, "I will come anyway" and join him in his fight and struggle in
trying to make some sense of this most senseless and crude diagnosis
and disease. He is fighting for his life. I am fighting for his life--and hoping for a miracle.
 
As I continue to love, enjoy, learn from and honor him,
I am grateful for every moment and experience we have shared. Every thought
and stolen memory I can, and will, continue to share and remember, knowing
I was blessed with the most wondrous brother; one who amazes and overwhelms me every day.

My heart breaks a little more each day. With the swallow of a pill, a groan, a sigh,
or the pensive look of pain that hasn’t left his face since his diagnosis--
he continues and remains determined, always.
Productive, beautiful and thoughtful, constantly.

His is an amazing life. And yes, I stand amazed.

I love you, my brother.
"This is not good-bye"

Loves,

Sheri

Remembering Mr. Jones (Scott Swaner) photos

Mr. Professor Jones, hanging in his office at The University of Washington.

Scott in Korea with a friend

In Memory Of Nadine Swaner, our Mom

ONE YEAR AGO TODAY
For our beloved Mother:

NADINE COX SWANER

September 13, 1927 ---- January 13, 2006

Saturday, January 13, 2007

Dear family, friends and loved ones,
Today, at 3:25 pm, our wonderful, beautiful Mother, Wife, Grandmother, Aunt and friend,
Nadine Cox Swaner, died at the Huntsman Cancer Institute,
surrounded by her family.

It was only one week ago that we were together with many of you,
as we grieved, honored and paid tribute to our brother, her son, Scott.
They were such dear and tender friends and so close.
Their bond and love for one another was deeper and stronger than anyone could imagine.
As tragic as the loss is that we feel today, we are grateful knowing they are not alone.
But together; able to enjoy, laugh and learn from each other, as they always have.
They are both now free from pain. This brings us some comfort.

The loss of our Mom, the loss of a Mother is especially difficult.
She has loved, protected and taught us so, so much.
She is unique in all the world. We count ourselves particularly lucky
and blessed to have been hers.

She is grand, eloquent, beautiful, selfless and long suffering.
She will be remembered most for her graciousness, generosity,
unconditional and boundless love and strength. She lived a determined and purposeful life.
She is the strongest woman we know. Her faith and love for her Heavenly Father is unparalleled.

A gentle woman, with a twinkle in her eyes and a smile that could light up every room
and brighten any heart. She brightened all of ours.

We love you Mom! Infinitely and Eternally.
We will always miss you more than you will ever know.
Our hearts are broken and we are so, so sad.
No one, and nothing prepares one adequately for the loss, the death of your Mother.
We promise that we will love and cling to one another, forever and always
and think of you every minute of every day
and be grateful for every stolen moment and memory we shared with you.

Loves,

Sue, Sheri, Stacey ( and Scott )

We know that for many of you, our Mom’s death comes as a shock.
Many of you were not aware that she was ill.
Please feel free to contact us and we will help as best we can.

Sue Swaner: albeez_90@hotmail.com
Sheri Swaner: sschapin50@gmail.com
Stacey Swaner Moore: pancreasboy@comcast.net


A Mother's Love
~
A mother's love determines how
 we love ourselves and others.

There is no sky we'll ever see

Not lit by that first love.
Stripped of love, the universe

Would drive us mad with pain;

But we are born into a world

That greets our cries with joy.
How much I owe you for the kiss

That told me who I was.

The greatest gift--a love of life--
Lay laughing in your eyes.

Because of you my world still has

The soft grace of your smile;

And every wind of fortune bears

The scent of your caress.

Nicholas Gordon

BRIEF INDECISION revisited: July 22, 2006

This post is a reprise from the original from this same blog.

As the one year Anniversary of Scott's death came and went, December 20, 2007, a mere
two days ago, it prompted me to re-read some of his blog.
It brought back many memories, reflections, and the utter horror of this entire situation;
Scott's diagnosis, and his eventual death from pancreatic cancer.

There was so much, in the "in between."
The same could be said for "The Aftermath," the time, spaces, places, feelings, people, confusion
between the here and now.

One of Scott's dearest friends, a frequent and eloquent blogger, and a dear, dear friend
to many of us, lost her Mother to cancer, shortly after Scott died. A "double whammy" to be sure.
My family, Scott's family, lost our Mother a mere three weeks after Scott died.
These episodes and events, give one pause.
Cancer--- I'm sick of it. Death, I'm so tired of it interrupting so many peoples lives.
And yet, it is a part of life.

It is almost Christmas Day, a Holiday, a day of worship, joy, reflection, a traditional time of "family,"
for many people.
Whatever your belief system is, whatever you do on this particular day,
at the very least it is filled with feelings and memories-- both of families and friends.
A day of love and connection.

This day, is forever changed and altered.
I wish DZD comfort and peace. I wish franky, the same.
There are too many people to mention, and, this really isn't my blog or forum-
it's my brothers.
But I do wish you all, peace and comfort and joy.
And if Scott were here today, I know he would want to thank all of you
for loving and caring for him so completely, supporting him,
with such gracious selflessness. Me too.

I wish any and all who are struggling, suffering or filled with a sense of loss
or emptiness, any who are fighting for their lives, just as dear Scott did, not so long ago,
the determination to continue to fight and rage. Life is worth it.

There are better times ahead. And even when it doesn't feel like it,
you are not alone, we are not alone--
we have each other to lean on, when we allow it.

My best to all of you,

Sheri

PS I love and miss you Spot.

revisiting Scott's blog.
His post and the comments made, on July 22, 2006.


Do Not Go Gentle — Poetry & Cancer, Life & Death
Some thoughts about pancreatic cancer, pancreatica, metastatic cancer, dying young, untimely death, quality of life, then poetry or "a making, a creation" — & what can be left of it while coping with fear and grief and dumb fate; trying to make a life, with what seems like little left. Family & friends, love & loss. Comments are welcomed and encouraged, though word verification and moderation are required.
Saturday, July 22, 2006
7.22.06, Brief Indecision
Walked into the kitchen, which is still shaded out because of yesterday's heat — and what they say will come today as well, and took a left turn, walked about ten feet to the far wall where I stood facing the sink, coffee maker, coffee grinder, rice maker, dish rack. For a brief moment I thought about what Frank asked me once, or I thought rather the object of his question, at what point when you get up every morning do you think "Ah, fucking cancer"? Today I woke up and it was already woven into my thoughts from the left turn, the ten feet, the facing of the morning machines.

Cancer, cancer, schedule, calendar, how long, tasks, limited range of drugs, more cancer, less calendar . . . for a moment that's all I thought, not consciously but still that's what I woke up with. Then it hit me, "It's simple. Just make coffee. That is clearly the answer to everything." Just like in Home for the Holidays when Holly Hunter and Anne Bancroft are together talking family shit in the kitchen at 3 in the morning, what does mom do? She puts on a pot of coffee. Every morning, then, too, that's got to be the same answer. It's Pascalian, ". . . kneel and move your lips as if you believe. . .", the exact same behaviorist principle. You'd be surprised at how much of life's routine will simply automatically begin its motion, just start to move by itself, once the beans are ground, cold water filled in, and the switch flipped. It all starts. It's all about making coffee.

This is how the terminal psychology seems to work, if I am in any way representative: News from the restaging wasn't really news in the sense it was information I was waiting for but already knew, information I knew would be coming at some point; the only remaining question was precisely "when will it come?" "when does the cancer pick up and start to move again?" Those are the basic stakes, point being that it shouldn't have come as much of a surprise. But the last restaging brought unexpected good news, and so this week, we, I at least, thought "Hey, maybe we'll have one more piece of good news. Just one more."

The pychology: You receive the shittiest news, you absorb and process it, then you begin to live your new life with this knowledge. The infinite amount of time ahead of you, the juggling of projects within the mind indefinitely, the procrastination with little consequence, and simlpy taking every day for granted and people for granted and the concept of "tomorrow" for granted, all of that is wrenched up, turned over or around, and slammed down in some disfigured form. You still have to make use of it, just that now this thing, it is misshapen and unfamiliar almost. Now, the restaging restarts the whole process, but you've been through it once before so that this version is not quite so baffling, the tunnel vision, heavy crushing feeling descending on your skull, the inexplicably loud heartbeat, and the gradually collapsing vision of the whole room around you — all this happens again but not so severely. This time you know it won't beat you, you're not actually worried you'll pass out and wake when head cracks against the exam room white linoleum floor. This time there's more anger than surprise. This time you're faced with how cancer doesn't give two squirts of piss about 8 weeks of rest or healing, it will move on. This is all just to inform you. An expensive way to inform you. You've been playing on your winnings already. One message. Your winnings are about gone. Second message.

Posted by Mr. Jones at 1:56 PM


3 COMMENTS:

lefty said...
FUUUUUUUUUUUUCK!!!!!!!!!!!!!!!!!!!!!!!!!!.....
there, i said it. did it work? did i shout it loud enough? spot, i'm so sorry i haven't commented in forever. i do try and catch up and read everything a few times a week. stolen moments at work, you know.
i go through every day with thoughts of you, the cancer, the past, the future, history with you, history despite you and then WHAM.......the daydreaming and nightdreaming with thoughts of you front and center or blended with something else going on, end. i am jolted back to the present, your present. this can't be happening to you....i remember there is not a damn thing i can do.
i can't remember not knowing you. i don't think you know how important you are to me. all of these random thoughts are driving me mad. i'm trying to keep my girlfriend upright and focused while i'm so pissed off and sad. this long distance really sucks right now. if i could only go pick up some pho (thanks for that spot) and come over tonight. well, i could come and get you and bring you back here with the central air and we could watch home for the holidays and the ref and laugh so hard at all of the familiar, or familial, moments until rice noodles choke us. my thoughts are so crazy jumbled after that post spot. i love you so much. i think i am encroaching on a larry length post : )
just put your chucks on and come over. i miss you and i think laughter is the only decent medicine there is. you know, you are going to miss mormon, i mean pioneer day here in this fair state (not the state fair-that’s something else). a free day off work to eat your favorite...swine. hot dogs for you who are unfamiliar with the crazy customs of this crazy state. it’s bigger than the 4th and we are home to the 3rd? largest parade in the united states. the people camping out are a sight to be seen.
all of the jones’ family will be gathering at tossing salad’s for steak and farmer’s market vegies and fruit and maybe some swine. we will all be thinking, talking and laughing about you. there will be some massive fireworks and then the grind starts again. there will be no effing (sp?) mr. jones senior though. he’s not ready to witness his offsping having fun, i mean, his offspring living “immorally”. save that for another day.
you are in my every gesture and thought.
your eloquent posts are incredible but today knocked me on my ass. larry had to walk away.
xoxo, lefty
7:15 PM, July 22, 2006

tossing salads said...
scott, just had a nice conversation with julias brother who lives across the street from me. im sitting her with tears in my eyes. i love you and i fucking dont want this happening to you. your restaging wasnt the best news but it wasnt the worst news. i have been blessed to be your sister. i can only thank you for the opportunity to have helped name you, change your diaper, watch you hit home runs, be so fucking smart that it was scary. i knew i would never be able to keep up. what a gift you are. thank you for showing me a different way of thinking, of being. i cant even imagine what knowing what you are facing means. i would like to know that i could be so brave, so thoughtful, so giving. i dont think so much is fair. we so need people like you. to make this world a better place. you have never thought of yourself as better just because of your intelliegence. you have just accepted that some can teach, give you knowledge, just accepting. from one of the most intelligent people on the face of the planet. fuck!!!! please keep fighting, all the way. this doesnt deserve you. we deserve you. i love you. i so want to be as brave as you. my thoughts are always with you. thank you.
8:03 PM, July 22, 2006

Anonymous said...

Mr. Scott Jones
this might come across cold, but it is not meant to be. what you posted today, although i wish your illness never happened, i almost feel relieved to hear you confront it. i think it's good that you are so up front and honest about your feelings. what a privilege it is to be able to share that with you through your blogs. there's a lot of intimacy with all of your posts, but the nature of this one seems especially so. thank you. thank you for keeping everyone in the light when it comes to how you are actually handling all of this. you could've just as easily shut everyone out. i think you're right. although i wish with all my heart that things were different, i'm thankful to hear that you're trying to go through one day at a time (whether it'd be making a cup of coffee or something else), you're still getting up to do so - you're still fighting for every bit of "normal"; even though your post reads a little like a part of you is letting go, facing the horrid truth of the matter - i think it's all strength. i know you're just being truthful...but don't forget, "let the chips fall where they may" can still buy a lot of time if you fight for it. please keep fighting -
10:27 PM, July 22, 2006

BITS OF GRACE & GRATITUDE

More and more, I am discovering that I am not the only one

whose life Scott touched.

Thank you,  for your kind letters, emails, and for "checking in,"

especially this first Holiday Season of loss.

It means so, so much.

Please feel free to write, comment- whatever.

Somehow, I think your voice and words will find their way

to him.

With love,

Sheri and family

sschapin50@gmail.com

<

posted by: slarry

a guest and sibling of mr. jones

12.06.06, From Zion, Condition, Updates

[I just sit back here and watch what is happening on this post, this post to cover my ass for all the days I've missed, the days of distraction, trying to cover for pain and other things. Thanks to Kim is all.
]

"Travelogue and Updates"

Tuesday, 28 November 2006

I asked Scott if I could do this blog as an opportunity to share some thoughts. Some of this is indeed a travelogue, on our recent trip to Salt Lake City.
Some thoughts on my past two months in Seattle and learning what it means to live with cancer. Finally, an update on the situation, Scott’s condition, that sits so heavily on everyone’s mind and heart. Perhaps this will be more than some of you are prepared for, and surely not the news you’d prefer to hear, but here I go . . .

There are moments in everyone’s life that for one reason or another stay cemented forever as one of Life’s Defining Moments. Watching a son say goodbye to his mother, both people thinking that perhaps it will be the last time. If it were simply that, it’d be sad but not very unique of a situation. But, the mother is in the Intensive Care Unit at the hospital and the son is visiting her from out of town. The son is 8 months into a fight with Stage IV pancreatic cancer, a disease with a mere 20% survival at one year. It’s a race, for life or death as the case may be – will the elderly mother outlive her son in his fight with cancer, become one of the 80% who do not make it, within the next four months time? Or, will the son beat the odds only to watch his mother succumb to old-age disease, tired body parts and systems slowly failing in an escalating cascade? And what of the family? Trapped in the middle, watching old and young alike struggling as disaster and tragedy lurk around every corner. This is of course all happening to a family that has already experienced another tragedy, another senseless death barely a year ago.

Unfortunately, this does sum up a big part of what I took away from the trip we made to Salt Lake City for Thanksgiving, to visit the Swaner Clan. The trip coincided with his mom being in the hospital due to a yet undiagnosed cardiopulmonary disorder. So, a tough way to spend the holiday, between trying to manage the holiday frenzy and juggling hospital visits to see Scott’s mom, as well as Scott’s own ever increasing issues with cancer.

I hadn’t met most of the family before, and didn’t quite know what to expect even as I had gotten the basic who’s who from Scott. Many interesting observations on human psychology and coping mechanisms, family dynamics and relational roles. I’ll just leave that one there =) Everyone I met was very nice, and I was touched with how involved everyone seemed to be in all the sickness, and helping out wherever they could. I still remember how draining the daily trips to the hospital can be, coupled with the feeling of helplessness and the constant waiting for news, any news from any doctor that might bring the situation closer to resolution. Big thanks to everyone for your graciousness and hospitality.

Shifting gears now to Scott, and how he’s been doing. I’m sure you’ve all sensed from the diminished frequency of blogs that things have been getting tougher as more time passes. If you’ve communicated with him recently indeed his thoughts are darker as the quality of his days increasingly fluctuates towards bad. It’s hard to deny that the clock is ticking louder, if not also faster. Idealistically, every day starts with the hope of being better than the last, but too often these days precisely the opposite seems to happen. It’s rough to start a new day when the night just kicked your ass. The cancer seems to be actively spreading, day by day despite the rage and fight against. It moves faster than we do, faster than we seem capable of adjusting and adapting to. There is no such thing as “managing” the disease, only a weak attempt at not getting steamrolled by it. It seems to manage Scott, dictates what he can and cannot do, what he can or cannot enjoy even. I can launch a complaint, scream that it’s not fair, but what’s the use?

The synopsis is that things have been pretty rough. He spends a lot of time just trying to get the pain under control, which becomes a physically draining task. Most days, he has a tough time even getting started in the morning as his mind seems foggy and slow. The days start with a big dose of pain meds, at whatever hour between 5 and 7 am that the pain becomes unbearable, then lie back down and wait for the meds to kick in and try to catch up on some sleep that didn’t happen the night before. Late morning, try to wake up for real and start some semblance of a day which might include some phone calls, some email, or mostly lying down or sitting still and reading if he still doesn’t feel too great. Try to push down some food in order to take some meds, drink some glycojuice. By the time I get home from work between 5 and 6, often the pain has returned in some (usually pretty serious) capacity. All this to mean, all but a couple hours of each day are pretty much stolen from him, from us, by this loathsome disease. Thus, the challenge becomes: can we make the best of that brief time each day. I won’t deny that it can be overwhelming.

Additionally, Scott’s been experiencing shortness of breath for the past several weeks. Initially, this was attributed to his diminished red cell counts (anemia), as was his general lack of energy and tiredness. These are all very common chemo side effects, and thus not of particular concern. He’s already on a biweekly drug (Darbo) to help manage the anemia. His breathing got acutely worse on the Saturday night/Sunday morning after Thanksgiving while we were in Salt Lake. Bad enough that we paged the doctor on-call in Seattle, to ask what we should do. She actually suggested a range of possibilities, from anxiety and stress on the mild end, to a pulmonary embolism on the severe end as explanations for this sudden change. Her recommendation was to get a chest scan as soon as possible.

Monday morning, back in Seattle we went straight from the airport to the Cancer Care Alliance for what should have been a regularly scheduled chemo appointment. We relayed to the nurse what had happened over the weekend, and she arranged for the CT scan that the on-call doctor had recommended. A quick check of his blood oxygen level put him at 92%, which was not a very good sign as normally it should be closer 97%. Five brutally long hours later, the CT scan showed a pulmonary embolism. Scott was told that the decision to go ahead and do chemo that day anyhow or postpone was his. After all that had happened with not getting any sleep for two nights, waking up early to catch a flight, then all the waiting around at the hospital, he could barely put together a coherent sentence. I tried to get him to eat some soup, and he kept falling asleep with the spoon mid-way to his mouth. Not getting chemo was probably a good idea.

On the pulmonary embolism – it’s essentially a blockage of an artery in the lungs by fat, air, clumped tumor cells, or a blood clot. They’re not sure what caused it, but apparently cancer patients are at an increased risk for developing them due to changes in the clotting mechanism of the body and/or as the tumor spreads. There really isn’t any quick treatment to get rid of the clot, but they gave him an inject-able blood thinner called Lovenox to help dissolve the clot so that his body can slowly resorb it over the next several months. This means he won’t get better very quickly but he shouldn’t get any worse either. They arranged to get oxygen delivered to the apartment that afternoon, to be used ‘as needed’ and so home we went.

I must say that this particular piece of news was difficult to digest. On the one hand, it’s pretty bad news. But it’s uncertain how bad it is, or if something else will come along and be even worse? For now, it’s manageable with the oxygen at home and it’s slowly being treated with the anti-coagulant (blood thinner). In terms of quality of life, it does make it harder but it still doesn’t beat out the pain as the biggest detriment to this factor. It just means this wretched disease is only getting stronger as it takes more away from him . . .

Thursday, 30 November 2006

Fucking cancer. I can’t keep up. In the day and a half since I had started this post, things have changed yet again. It’s progressed, or at least we’re more aware of the progress now than we were two days ago. To be frank, it’s moving fast . . .

I don’t have the complete details as I wasn’t present for today’s appointment, another restaging, but I will relay the details best I can. There has been a significant change in the CA19-9 cancer marker number. This is the number that started approx 12,000 when Scott was first diagnosed. At it’s best, we saw a drop to the 5,000 range after the first several rounds of chemo in May/early June. However, by the second restaging mid-July when we learned that the chemo was losing it’s effectiveness the number started to slowly but steadily rise again . . . 8,000; 9,000; 12,000. We’ve been trying to play catch up ever since. The most recent numbers have seen a much more accelerated increase. I saw a number from November 13th at right under 30,000. Today, we learned that his most recent test (Nov 27th) came back at 41,000.

An update on the pulmonary embolus, which turns out to be emboli. Two of them, one on each lung. Luckily, neither of which are too close to the heart (fear of it breaking off and causing a heart attack). Tumors, and sizes thereof, were not really discussed today as this restaging didn’t involve a pre-restage CT scan.

A significant portion of today’s discussion with Dr. Whiting centered on management of the pain that has been ever increasing, and overall quality of life issues. And yes, end of life issues. The decision to continue with chemo or not was posed, as it’s become evident that there are diminishing returns to balance with the side effects of chemo that have been intermittently manageable, or somewhat heinous as was the case with the acneiform rash from Tarceva.

Some new meds for pain management were prescribed: a fentanyl patch, Dilaudid, and another one that I can’t recall the name of. The thought was that Scott has been seriously under-medicated for pain for a while now, and the hope is to try to get it under control. We keep getting told that he shouldn’t be suffering as much as he is, and maybe this will be a positive change. Although, it is scary that they’re bringing out the big guns on this one, so to speak. As a drug, fentanyl has an analgesic potency of about 80 times that of morphine. The patch is meant to offer a slow but steady dose of this compound continuously. Dilaudid (aka hydromorphone) is one of the most potent narcotics they can prescribe. He’ll give these new drugs a whirl as soon as the prescriptions actually get filled.

I lack Scott’s eloquence and grace with prose, and thus apologize if my delivery is too blunt or harsh. Scott and I have had a few conversations on what to tell people, the friends and family that are concerned for him and anxiously await any updates, any news at all. As difficult as the news is to hear, it has been exponentially harder to deliver and I wanted to help him out on this one. I hope this allows everyone some time to think about and reflect on the situation, what has been happening and what might be happening sooner than we’d all like. Difficult times lie ahead, and your continued support and encouragement do not go unnoticed nor gratefully received.