In Search of the Authentic

Being weakened forces you to be introspective. Doctors only add to the process in that they won’t let you just passively lie in a hospital bed whilst anointing ministrations of highly developed science over your forehead or have their acolytes do it intravenously! Alas, I regret to inform you that the great mysteries of the caduceus will not be revealed to you under the auspices of some arcane ceremony. Nope, not gonna happen!

When you’ve gotten sick to the point of being hospitalized, the doctors are more concerned with the great subjective things like what your pain is on a scale of 1 to 10 and the color and consistency of your poop. And while I’m not making that up, and while it’s very true that there are a lot of highly confusing terms, abbreviations, and meaningless numbers (to us laypeople) on a lab report, it’s something you have to dive into to understand, seriously. And you really need to understand as much as you can…because after all, it is all about you and you’re pretty damned important if I do say so myself!

Far from being an exercise in ego or self-absorption, taking everything in, is essential to your healing and as I’ve found over the last couple of months as an inpatient, it’s essential to transforming into a more authentic person. Now, neither healing nor transforming into the authentic are mandatory, but I daresay that we all want to get and feel better at least. It’s no fun being in pain or feeling debilitated in any way. But I take it a step further. Why would I want to go through this hell if I’m simply just feeling as good as I was before I started? Let me go back to the beginning of this post to answer that – being weakened forces you to be introspective, to look within yourself. The key, of course, is what you do once you’ve gazed at what’s inside.

I’m not suggesting that there’s some great revelation, but there just might be.  More likely of what you’ll see is the real person inside and depending on how much we delude ourselves will determine how much of a surprise the ‘big reveal’ is.  If you’re at all like I am, it is like layers of an onion and over time, a new layer gets pulled back until you get to the core…and like any good sweet onion, there are a lot of tears involved. Oh yeah, there are tears involved. Shoot, I cry at the drop of a hat these days and it could be for just about anything – a song, a cheesy advertisement, or because maybe I’m overwhelmed with the magnitude of what I’m walking through. I’m not entirely unconvinced that the medications I’m on play with my emotions as well. What is very likely happening, is more the body’s response to the chemotherapy as much as the actual drug itself. The brain fog or “chemo brain” that I alluded to in my last posting is a direct result of the chemo drug. From what I’ve been able to find, studies show that as much as 80% of cancer patients deal with some sort of cognitive impairment as a side effect of chemo treatments. Other emotional responses hit us in a unique way as individuals.  How we respond to the diagnosis, our support network, the financial burden, and so on all make an impact on the emotional trauma and where any one of those stressors would be bearable, the sum total sometimes just becomes overwhelming and the littlest thing can set us off into our own China syndrome.

Part of my journey into cancer has pointed me in directions I wouldn’t otherwise focus; It has certainly opened my eyes to a number of things I wouldn’t otherwise see; and it has forced me to once again look within myself to figure out who I am. If you’ve been following my writing, you may notice some recurring themes and I think it’s fair to say that the reason for that is because my own ‘big reveal’ isn’t something that has happened all at once. It’s much like a play where there are several scenes that develop the character and prepare us onlookers for the big dénouement at the end where we all figure it out at the same time. If you keep following my stirring narrative, you may get a front row seat to watching my ‘eureka moment’ as well.

I don’t think being introspective has to be an exercise of ego any more than it is one of mid-life crisis. It certainly can be and if it is, getting beyond the self-centered nature of who we can meander toward as American creatures of habit is probably a good exercise. But what I’m getting at is more of an honest inventory of looking ahead and making the most of our life experiences up to this point. My bald pate, even under the clever disguise of a hat, is a great big flag to other cancer survivors and no matter where I go in public these days, I can escape the scrutiny and I should add the vocal support of others. In getting a spare key this morning, the person who assisted me at Home Depot was 15 years cancer-free and she didn’t let me get away with that key until she encouraged me in my own struggle…and it is there where I have to begin passing it on to someone else who needs what I have.

Sunday night, I was finishing up a post when I got an instant message from someone I have known for many years, but hadn’t reconnected with since returning to Utah. He offered his well wishes that I had just gotten discharged from the hospital and feeling well and in the next sentence was nervously volunteering the information that he was dealing with a tumor and all the unknowns that go with it. Introspection just became active and rather than simply spouting a lot of things I thought he should do, I could just be and let him be as well and let him get the nerves and the fear out of his system. It’s what I needed when I found out what I was facing. I’m sure he’ll come through it just as well as I’ll come through my own struggle, but it showed me in no uncertain terms that looking inward is a good thing if it brings about a change for the better. I’m hoping that the transformation continues to be one from one of fear and pain to one of offering friendship and solace; from one of self-reliance to interdependence; and from being the one seemingly with all the answers to the one with always room to grow. Yeah, there’s a lot left to figure out as I’m sure there’ll be quite a few nights where 3:00 a.m. and sleep won’t be matching up in the coming months, but it’ll be those nights where I’m thinking about myself, but there won’t be any pity party  invitations sent out, but rather I’ll be trying to work out who the guy is inside who is actually the authentic one.

Be well, stay strong, and much love to you all!

Today’s music from Alanis Morisette – Underneath

Look at us break our bonds in this kitchen
Look at us rallying all our defenses
Look at us waging war in our bedroom
Look at us jumping ship in our dialogs

There is no difference in what we're doing in here
That doesn't show up as bigger symptoms out there
So why spend all our time in dressing our bandages
When we've the ultimate key to the cause right here
Our underneath

Look at us form our cliques in our sandbox
Look at us micro kids with both our hearts blocked
Look at us turn away from all the rough spots
Look at dictatorship on my own block

There is no difference in what we're doing in here
That doesn't show up as bigger symptoms out there
So why spend all our time in dressing our bandages
When we've the ultimate key to the cause right here
Our underneath

How I've spun my wheels with carts before my horse
When shine on the outside springs from the root
Spotlight on these seeds of simpler reasons
This core, born into form, starts in my living room

There is no difference in what we're doing in here
That doesn't show up as bigger symptoms out there
So why spend all our time in dressing our bandages
When we've the ultimate key to the cause right here
Our underneath

Beauty in the Breakdown

At the outset of my diagnosis, a close friend of mine told me about something called “chemo brain.” At the time, it came across as yet another euphemism for “old timer’s,” a “senior moment,” or something along those lines, but it does exist. The more reputable web sites such as The Mayo Clinic will acknowledge it, but in a way that makes it sound more anecdotal rather than factual. In listening to the many, many cancer survivors who report short-term memory problems as well as my own experience, I can say unequivocally that my brain’s short-term memory is working just fine. The only caveat to that is that it’s not getting same-day delivery as often! My long-term memory actually works really well as can be attested by visitors. I think the best way to explain that one is that I can read their minds, but just not my own! How fun is that?!

It can be entertaining when you’re with a group of people who are in the particular age group where it takes a bit of extra cognitive effort to remember things. I feel a little less impaired and we all have a laugh because my particular brain farts are more unpredictable. After all, they weren’t there just a few months ago…a bit like my hair actually was there. I think it just proves that hair does carry brain cells in it and when it falls out because of chemo, well, you do the math.  My ex-wife used to tell me that placenta was another word for brain cells, but it seemed to me she didn’t get any less sharp mentally with the arrival of new kids.  Actually, I think we both got smarter. The older kids got away with much more than younger ones!

I’ve found that after a round of chemo treatment, I have to think a bit harder to express myself or find the right word which, for someone who writes a lot, is frustrating. As the days pass, it seems to alleviate some, but since I go back in for another round every 28 days, there isn’t enough time for it to completely go away. But this will all end at some point and I’m expecting to get all my faculties (and my hair) back in good working order. So, since I had my last treatment in the second round of consolidation chemo last night, you’ll have to cut me some slack if I forget a serial comma, dangle a participle, or am guilty of some other such grammar infraction! This is roughly equivalent to driving on a hangover – nothing too terribly dangerous, but I should be sleeping it off, right? Well, since I haven’t had a hangover since 1983, I’m probably not as qualified to comment on that, but since I have, in fact, had a hangover, I can. Moving on!

I was discharged from my suite at the hospital this morning rather efficiently. I was told initially that I would get my papers between 10:00 am and noon and by 10:20, I had my prescriptions and had signed my discharge papers; by 10:30, I had my PICC line removed and was ready to roll. The VA hospital was remarkably quiet.  It usually is anyway on a Sunday, but I noticed most of the week that many of the rooms were being cleaned since the “census” (patient count) was lower than I remember from my previous two visits. The four walls of my luxury suite gave me a serious case of Cabin Fever this week as the weather has been really nice out and today was no exception.  The temps pushed into the 70s and I was pushing to break out. You know what it looks like on the inside of a hospital room.  I thought I’d actually take a picture of what it looks like on the outside since I don’t see that all too often.

So, we’re back in the waiting game.  I found out two weeks ago that the Veterans Administration had approved my transplant. This past week, the paperwork had been forwarded and now the donor search can actually move forward (the crowd roars).  I’m hoping that I don’t see another round of consolidation chemotherapy before I find out that a donor has been identified, but it is a possibility.  In the meantime, of course, we’re all on hold, waiting for the donor to be identified and to agree to go through the procedure. Thankfully, it’s not as daunting and painful as it used to be.

I did come across a highly publicized story this week about a college athlete named Cameron Lyle who decided to forego his ultimate track and field meet in order to answer the call to be a bone marrow donor and save someone’s life.  It not only gave me hope in my fellow man, but it also gave me hope for my own case. There is someone out there who is also foregoing something significant to give me a second chance at life as well and when that happens, trivial things like ‘chemo brain’ just fall by the wayside. The term that jumped into my head as I was considering what to write today was ‘beauty in the breakdown,’ something I heard from a soundtrack to Garden State some time back, yet it encapsulates everything about what I’ve felt this week and even the comedy of ‘chemo brain.’

You see, there’s something very attractive and special about breaking things down to their essence. And a breakdown in the sense of a failure of some sort is often the only way to get there. It’s a particularly effective and direct way to do so because this part of the battle against cancer I cannot and really should not fight.  This is the transformation that I have to embrace amid the pain of it all; this is the part where I have to let go in order to win the fight. I am fighting to win the battle against cancer of course, but letting go to find something…someone whose essence is emerging through the struggle – and that would be me.

Be well, stay strong, and much love to you all!

 

So, in honor of that beauty in the breakdown is the song I got it from: Let Go by Frou Frou off of the Garden State soundtrack. This link has scenes from the movie.  The 'video' above is the music only.

Drink up baby doll
Mmm are you in or out
Leave your things behind
'Cause it's all going off without you
Excuse me
Too busy
Oh, writing your tragedy
These mishaps
You bubble wrap
When you've no idea what you're like

(So let go) so let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown
(So let go) let go
Just get in
Oh it's so amazing here
It's all right
'Cause there's beauty in the breakdown

It gains the more you give
And it rises with the fall
So hand me that remote
Can't you see that all that stuff's a sideshow
Such boundless pleasure
We've no time for later now
You can't await your own arrival
You've twenty seconds to comply

(So let go) so let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown
(So let go) yeah let go
Just get in
Oh it's so amazing here
It's all right
'Cause there's beauty in the breakdown
'Cause there's beauty in the breakdown

So let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown
So let go
Jump in
Oh well whatcha waiting for
It's all right
'Cause there's beauty in the breakdown

Mmm the breakdown
'Cause there's beauty in the breakdown
Hey, the breakdown
So amazing, yeah
'Cause there's beauty in the breakdown

Camaraderie

When I raised my right hand and entered the elite club called the US military, the term comrade had a pretty bad rap. The Iron Curtain had a little rust, but Ronald Reagan had yet to tell Mr. Gorbachev to “tear down this wall” and the majority of my warfare training was geared toward the “evil empire” that was the Soviet Union and its satellites. You won’t see the USSR, Yugoslavia, or East Germany on a map anymore and most students probably don’t even know what it is or was. If you’re a child of the 70s or before, you’ll remember the communist scare and a lot of the terminology.  The term, ‘comrade’ still carries with it a bit of baggage, yet what it really implies is something that I think we all could use…and it sure feels like the right word when I’m trying to communicate my leukemia struggle to someone else.

Mind you, I’ve long since rescinded the pity party invitations, but I’ve been told by a lot of people a number of times that it’s OK to have a bad day. Sure, be positive, but let there be no doubt, cancer is serious and it’s not in any way, shape, or form, fun. But my point isn’t just about finding someone with whom I can kvetch (you were wondering when that word would come out, weren’t you?) After all, we all do it. Think about it.  You go to a party with co-workers and what do you do? You complain about work while your ‘plus 1’ looks on politely but has no clue of what you’re talking about except maybe the names of the people and a situation or two. We all have a need to commiserate and really what I’m trying to do is no different, but in my case, just substitute the word, “survivor” and you’ve got a rough analogy. We all want and truly need that camaraderie.

The thing I’ve struggled with my life though is to not be labeled or defined by any one thing or group of things. And it’s the same in this case. I may be fighting cancer and be called a “survivor,” but that doesn’t define me. I served in the United States Navy and am proud to be a veteran, but that doesn’t define me either. We all have things that we do professionally, spiritually, or casually of course. I’m thrilled to have so many different facets to who I am, but I would shudder to have one of them overshadow the whole of who I am. Thinking of gem stones, the thing that makes them brilliant is how the different surfaces catch and reflect the light. Having only one reflective facet makes a gem no more remarkable than a pane of glass.

I’ve known from the outset of my diagnosis that it would truly be transformative and that I’d be gaining another facet of sorts. We all know change is never easy and it often involves a degree of discomfort if not outright pain. There is the proverbial blood, sweat, and tears and I’ve experienced them first-hand as I’m sure you have when in the middle of things. And that’s the rub, isn’t it: not knowing what’s next, what the outcome is going to be, what the shape of things will look like, where that next facet will be carved. Doctors can give me a general idea, but they don’t know any more than they did at the beginning.  They just know the direction they have to send me to keep me alive. It’s like driving down a road in the fog.  You can only go so fast and the high beam headlights will only blind you, so you move forward and you move at the speed that will keep you on the right path and hopefully, you have a couple of comrades along for the ride who can help out.

I have my final infusion for this round of consolidation chemotherapy shortly and as long as everything continues to go as well as it has, I will be discharged in the morning and I can continue my convalescence at home. My week here at the VA hospital has been one of growth for me even though it hasn’t been easy. The doctors I had come to know over the past month are completing their rotation and moving to their next stop. I’ve made a couple of new friends that will extend outside these four walls. I’ve also found out that the nursing staff is watching out for me more than simply being another patient. That may be a small distinction, but the distance between being cared for rather than just being assigned as part of a duty is huge.

To have people along with you, regardless of how close they are, during this transformation has not just meant a lot, it has kept me going. Sometimes it has translated into an introduction to someone who is a bit closer to the process and other times, it’s just someone who sends a good word. But just as everything adds up when I’m feeling overwhelmed, the good will that comes my way is also cumulative and it has an uncanny way of greeting me when I need it the most, when I’m emotionally fragile, when I’m weary of putting on the brave face. It’s times like these that you all hold my hands in solidarity, in camaraderie.

Today’s music is Sting’s Fragile

If blood will flow when flesh and steel are one
Drying in the colour of the evening sun
Tomorrow's rain will wash the stains away
But something in our minds will always stay
Perhaps this final act was meant
To clinch a lifetime's argument
That nothing comes from violence and nothing ever could
For all those born beneath an angry star
Lest we forget how fragile we are

On and on the rain will fall
Like tears from a star like tears from a star
On and on the rain will say
How fragile we are how fragile we are

On and on the rain will fall
Like tears from a star like tears from a star
On and on the rain will say
How fragile we are how fragile we are
How fragile we are how fragile we are

Perspective

True to form, after my posting yesterday, I was introduced to someone today who put everything in perspective for me. A med tech that I hadn’t yet met was assigned to me yesterday whom I found out was a two-time cancer survivor.  She was also assigned to me today, and as I had finished my shower, she was changing the linens on my bed.  We chatted a while when she had finished and with the challenges she had and her positive attitude, I felt buoyed at the possibilities for the future. In trying to articulate how I felt, how I’m hurting, how I’m grasping for hope, I didn’t have to explain anything. As a survivor, she just knew - instant empathy. Now, that doesn’t mean that only those who have walked through the valley of the shadow of cancer can understand, but it’s just easier to get to the heart of things. Just before lunch, I wandered down to physical therapy and rode the stationary bicycle for about 20 minutes. After being accustomed to riding long distance, 20 minutes seems so paltry. Yet it’s what I can do right now. On the way back to my room, my new med tech introduced me to another vet, ostensibly because we’re the two youngest guys on the ward – but it’s the someone who unwittingly put things right for me and actually said that the best thing that could have happened to him is having his legs blown off.

If that doesn’t get your attention, not much will. He was situated in the same bed I started out in my first night in the VA hospital. The other bed in the room was gone and there were no chairs, so he had me sit in his wheel chair – a much more comfortable rig than the one I had been ferried around in during my bad days of induction chemotherapy. When you spend as much time in the thing as he does, it better be the most comfortable thing around! We shared some small talk, but in the same way I needed to talk to someone who was a cancer survivor, I found someone who, as a veteran, didn’t have the biases that are so common to both Utah as well as the officer corps.  We just connected and the small talk progressed to what I would have considered a rather tough thing to talk about – how he lost his legs.  For him, he jumped right into it, telling me the harrowing day that as a combat corpsman, he saved his two compadres, was slammed into a wall where he sustained unspeakable injuries, was stabbed by an Iraqi soldier, and still lived to tell the tale.

And yet, he was able to smile through the telling and actually say to me that he would rather be in his shoes (figuratively, of course) than mine.

No, it doesn’t take any time at all to find someone else in the hospital who is in worse shape than you, but I guess I didn’t take myself as being considered in worse shape than someone else. That’s perspective. The reason the perspective is there is not simply because we’re all different or because our experiences – even the same sorts of experiences – vary nor is it because we’ve had different cultural or socio-economic upbringings. It’s because we’re moving from one point in life to another.

In my posting last night, I quoted Nick Vuijicic as saying that we may not control what happens to us, but we can control how we respond. So, whether it’s an illness, injury, or personal crisis of some other sort, it’s all the same. We can choose to be defined by an event or we can be transformed into something new and better from our experience. Sure, we should expect some good days and bad days in the process, but we should also expect something genuinely good at the other end of the process. I’ve seen it in myself, I’ve seen it in others, and I saw it again today with my newfound friend. I can’t say that I would be able to be as truly upbeat as he is today after going through what he has, but it simply reinforced the point I’ve been espousing from the day I got my diagnosis and have been trying to project each day – healing is as much in our own power as it is within the medical arts. They have to work together. One without the other probably won’t get the desired result.

I’ve had to reinvent myself after a personal crisis or two and it’s fair to say that there will be some amount of reinvention at the end of this adventure in cancer. There will no doubt be some constancy in my life and in relationships, but there will also be new experiences and new people that will pave the way for heightened understanding and empathy as well as a new perspective in my life and that of others. I’m seeing though that it doesn’t always take the extreme of a crisis to do that, but we simply have to be open to new ways of thinking and seeing what is going on around us.

One of the hem/onc doctors described the bone marrow transplant as a super-duper long-term consolidation chemotherapy that totally kills the leukemia cells, which on the one hand didn’t thrill me since from my viewpoint, I’m shooting for "the cure." On the other, that’s what chemo does on the short term, so the description pretty much works. And in the same way, we all have small doses of chemo to help us kill off the bad things in our lives. And just like leukemia, if you don’t have the right circumstances (or in my case ,the transplant), the bad stuff comes back and it can take you out of the game. So, the important take-away here is to embrace the change, the new perspective, and be open to reinventing yourself to the improved person you know you want to be...and it's OK to have a bad day from time to time. Change isn't a cake walk. Perspective is not something that has to remain etched in stone from years of habit, but rather something that should develop and be engrained with the nuances of experience – yours and that of others. Enjoy the journey!

My music selection today is from Simon Webbe in anticipation of better days ahead – Comin’ Around Again

I've been sittin' in the darkness
But the sunlight’s creeping in
Now the ice is slowly melting
In my soul and in my skin
All the good times, my friend
Are coming around again
 
I've been thinkin' reminiscing
Of better nights and better days
Hidin' in the refuge of
Memories I've made
I gotta feeling within  
It's comin' around again

It's comin' around again
We've been so long waiting for the all-time high
We got a damn good reason
To put your troubles aside
And all your winter sorrows
Hang them out to dry
Throw it away, gotta throw it away
All the colourful days my friend
Are coming around again

Bon Courage

Just like anyone, I have good days and not-so-good days. Today has been a rough day. There’s just no way around it. I’m tired, I hurt, and I’m just feeling it all today…and in reality, I’m only at the beginning of this adventure. I’m not sure if it has something to do with moon phase, the change of seasons, or the coming end of the month when quite a few of the medical staff rotate to their next assignment. There were three student nurses training alongside regular RNs today attending me as well. So, the white coats and the nurses seem to have been fruitful and multiplied. Add to that my regular chemo was scheduled to start at 10:00 this morning, but as soon as the IV pump turned on, I knew something was wrong.

I could actually feel it inside my chest, which was odd.  It wasn’t uncomfortable, but I shouldn’t have felt anything at all. When I brought it to the attention of the staff they got me down to X-Ray and found that the PICC line had somehow turned upward toward my jugular vein instead of toward my heart as it should have. This isn’t entirely uncommon, but it’s not a good thing. It started to make sense as I did have a bit of a headache after my Tuesday night round and I could actually hear and feel the saline flush when the nurse disconnected the chemo for me to get x-rayed. That was a weird feeling. The not-so-good feeling was them putting a new PICC line in my other arm. There is some numbing in the area near where the incision is made for the catheter to be inserted, but it’s a bit painful as there’s a dilator that allows the actual catheter to be put into the vein. Several hours later, I still feel a bit achy from the procedure. And in just under an hour from now, I get the fourth bag of Cyterabine infused into me.

The doctors tell me about the side effects of chemotherapy in physiological terms, but when it comes to brain chemistry, I don’t really know and I haven’t researched it simply because there are always assertions on the Internet that will certainly support my or someone else’s suspicions or it may lead me down a rabbit trail to make what I’m thinking worse. The Internet is a great resource, but it’s also the hypochondriac’s playground as I’ve said and although I’m not prone to self-diagnosis, I’m looking for answers…and it looks like they’re going to have to come in the old one-day-at-a-time way. After all, there’s no sense in fretting over something I don’t know about. To quote the French Renaissance writer Michel de Montaigne, «Qui craint de souffrir, il souffre déjà de ce qu'il craint.» or “A man who fears suffering is already suffering from what he fears.” As for the here and now is certainly another matter.

The here and now is tempered by a few realistic things. A walk up and down the hallways and in particular today, a trip down through the tunnels. In a hospital, it’s not hard to find someone who is in the same boat as you (especially since there are so many navy veterans, even in this land-locked state!) and it’s just as easy to find someone who is in far worse condition and put things in perspective. And while the pain and the constant toll that cancer takes on your emotions makes it difficult to keep upbeat and positive, there’s something that I recognize I just can’t lose while walking through this figurative valley of the shadow of death. And that, quite simply, is hope.

Ironically, hope comes from giving it to others. It has come to me from those of you who have done extraordinarily small things as well as well as the things that I wouldn’t have imagined. It comes from sending words of encouragement as well as the Facebook postings, the jokes, the text messages, the things you may not consider at all, but matter a whole lot to me. In my wanderings today, I came across a little booklet in the convenience store tucked away in the tunnels near the cafeteria by a guy named Nick Vujicic (pronounced VOY-a-chich).  He’s not someone you’d very likely ever heard of before.  He’s not a famous guy, nor glamorous nor someone who wields political power. What he does though is wield influence in such a powerful way that it takes your breath away if you’ve ever seen him. You see, Nick Vujicic was born without limbs, yet offers the kind of hope that is inexplicable. He can go into a room and without even speaking the same language as his audience captivate and impart a feeling that doesn’t require the spoken word. He communicates hope…and while I recognize full well that I can’t always wear a smile, I have to keep hopeful deep down somewhere inside like Nick does.

I’ve found that the best way to foster generosity is to be generous; and naturally the best way to be hopeful is to offer it to someone who needs it. I suspect I’ll come across that person when I least expect it and in return find that I’ve been unwittingly bolstered myself. There’s no sense in being disingenuous about offering what you don’t have in order to somehow manipulate this intangible thing called hope, but to quote the guy with no arms or legs, “You may not control what happens to you, but you can control how you respond.

As difficult as it has been to face this long-term, painful disease called cancer with all the unknowns, I have to respond with courage, determination, and of course, hope. The French term, Bon Courage, that I entitled this post isn’t just for me, it’s for any of you who are going through it. Whatever it happens to be, bon courage! Dependinf on the context, bon courage translates to: good luck, hang in there, be of good cheer, be strong and courageous.

Sois bien, gardez fort, et beaucoup d’amour à vous tous…et bon courage!

 

Q & A, the Name Game, and Dancing into the New Normal

Today started out as one of those medically boring days, but at as the sun was setting, things got a bit exciting. I have made it a point to learn everyone’s name who comes into the room and takes care of me from those wearing white coats to the nurses and med techs to those who bring me my meals and empty the trash. I try to learn them all. Well, that good deed did not go unpunished today. While watching a DVD early this evening, a VA police officer opened the door and asked for me by name. Knowing who I am isn’t too terribly hard since I have a placard outside my door with my name emblazoned on it as well as a beautiful wrist band that I was warned I should shred when finished with it since it has my social security number on it. The officer asked me if I saw who it was who emptied the “sharps” bin today. My point in learning people’s names is to write a glowing letter of thanks to the VA for the wonderful care I’ve received since being here. Little did I imagine that the one who was emptying the trash was also salvaging the drugs out of the syringes and using or selling them.

My room is right next to the stairwell at the end of the hallway and most all of the medical staff comes in and leaves via those stairs and that’s how I found out that my remembering names was the key to quickly solving this problem. One of the techs came by and thanked me for positively identifying the person. Apparently this has been going on for some time and it doesn’t take a medical professional to tell you just how dangerous what this person was doing really is. I have to assume that this person is no longer employed, but may also be facing charges.

Maybe my good deed du jour was why there was a cookie on my food tray tonight. Nah, I bet everyone got one. Besides, the frequent fliers get the cookies when they arrive and they’re fresh, hot, and totally fattening! Anyway, I got my sugar buzz courtesy of my ma who brought a really good brownie in from her latest foray to Wendover, Nevada. With a little black coffee, it made for a great afternoon treat.

Learning the names of doctors has proven challenging because they typically rotate through different departments. This is compounded because there are two teams of doctors who attend me. There are the hem/onc (hematology / oncology) doctors which specialize in the treatment of the blood cancers and there is the medicine team, which is the group of doctors that administers what you might consider routine. They consult with the hem/onc doctors to make sure their treatment is consistent and they carry out the chemo orders prescribed as well. At least that’s my understanding of how the two groups work together.  The hem/onc doctors hold clinic at the VA on given days and then there are fellows who rotate through the Huntsman Cancer Center and other outpatient clinics as well as the VA on a monthly basis, so I’m actually on my third hem/onc fellow while the main doctor is the same one overseeing my treatment, oddly called “salvage.” The medicine group also rotates through but on different time schedules, so I’m on my third medicine team as well. The medicine team more closely resembles what you might see on “Gray’s Anatomy” where there is an attending physician, a resident, and a gaggle of interns, all taking notes and paying close attention. I probably don’t make it easy on them because I’m playing class clown and it’s this group who was entertained by my crass t-shirt and ‘no hair day’ beanie. Once I turned the subject to medical details, it was obviously a different story and it showed that the class clown was also paying close attention to what they were doing, even though my results were pretty low-key.

I used my one-on-one time with my hem/onc fellow today to drill him on specific questions I had. Trying to get information on the Internet, even from the most reliable sources, tends to be rather noncommittal and doesn’t address the kinds of questions I have.  I had also been visiting the Leukemia-Lymphoma Society bulletin boards and finding that the questions and answers there were typically geared toward children and more elderly patients. Much of what I read focused on relapse as well, which gave me a whole new line of questions to ask. Last week, I found out that the particular strain of leukemia that I was diagnosed with was referred to as “M5B.” This “staging” of my particular cancer has more to do with how well cells mature from my bone marrow than any severity of the disease. This was a relief as I had been thinking that the higher the number, the worse things were as it is with cancers with physical tumors associated with them. With the exception of the M3, they're all treated the same at the onset with rare exception. I also prodded him about prognosis, but he explained in a bit more detail than I got last week with my other hem/onc doctor that it comes down to how well my transplant goes and the reason that I had to get a transplant rather than simply getting chemotherapy since I had normal chromosomes. “Normal” chromosomes don’t make someone either high or low risk of relapse after induction chemo, but there are two additional mutational tests that are run in conjunction with the initial biopsy. One of these mutation tests made me low risk, but the other test came back positive and offset the first and indicated that without a marrow transplant, the leukemia would certainly come back.

So, on to the transplant. Once that happens, there will be inevitable graph versus host issues and that’s important.  The severity of that is staged on a scale of 1 to 4. With no graph versus host (GVH) issues, it is likely that the leukemia will recur; on the other hand, a severe case isn’t something we want either, but it does indicate that the new immune system is aggressively attacking the leukemia and of course, that is a good thing, so the hope is that there is a moderate degree of GVH. My big question had more to do with restrictions after getting back from the transplant and the good news is that my “new normal” is simply a matter of maintaining a frequent flier status with doctors and hospitals, but this kind of interaction wouldn’t be a lot of inpatient like it is now. It would also make it easy to see if there was a relapse very early and come up with a different treatment regimen quickly. As for getting physically active and traveling and doing the things I wanted to do, no restrictions. And that, my dear readers, was what I really needed to hear today!

So, we move toward getting this transplant done and getting to the new normal. You all know I have places to go, people to see, and I do have some perfect moments to discover!

My music selection for the day is Lee Ann Womack’s I Hope You Dance. I chose it as a nod toward a friend of mine who is on the downside of his own battle with AML.  He is my daughter’s father in-law and although admittedly cancer sucks, for him it was well...a dance!

I hope you never lose your sense of wonder
You get your fill to eat but always keep that hunger
May you never take one single breath for granted
God forbid love ever leave you empty handed
I hope you still feel small when you stand beside the ocean
Whenever one door closes I hope one more opens
Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance

I hope you dance
I hope you dance

Frequent Flier

In my previous professional life, I used to do quite a bit of traveling. I have a special portfolio of sorts where I keep all my frequent flier and hotel reward program cards. If you’re one of those road warriors, you know the drill when you check-in for a flight or a night’s stay at your chosen hotel chain. They see the gold or platinum colored card and they smile and thank you for your loyalty and give you the fresh baked cookies or other perk that goes along with the program. It’s kinda nice actually, especially if you have to be away from home for days on end.

"Just a spoon full of Starbucks helps the chemo go down....in
 the most unlikely way!" Starbuck's courtesy of my sister, Lynette
(big hugs). We won't be giving up our day jobs to be songwriters
 any time soon, but we do have the tried and true family warped
 sense of humor! My nurse of the day, Carol wearing the latest in
chemo blue fashionwear.

Now, if my calculations are correct, I have 31 days here at the Hotel California, one of the club ‘med’ chains where you can check-out when the doc says it’s OK, but you never really leave.  I keep coming back three times a week when I’m not inpatient and I’m bedding down on night number two for another one of those extended stays. My travel plans have me checking out Sunday morning if all goes well. I don’t know if that will put me over the line for the platinum level rewards yet. If I were to guess, I would say it does since I have the nice room, so they must have sent the special fru-fru card in the mail. No cookies on check-in though, but the room service is pretty nice. Once I finish up in Seattle, I’ll no doubt have the coveted black card! Not too many of us get that one…and honestly, who would want one?

There have been a lot of things I’ve wanted and when I got it, found it wasn’t all that it was cracked up to be. I can remember a quotation on Mrs. Van Rosendaal's (my 9^th grade health teacher ... impressed I remember her name?!) chalkboard that pretty much put that sentiment in a nutshell: Far better to receive not what one wanted than to receive what one wanted not.” That’s true on a number of levels. Very clearly, I didn’t want to be a ‘frequent flier,’ so to speak, at the hospital, but there have been a number of silver linings I’ll write about as I am able to list them out. The term, ‘pay it forward’ has been poignant for me as I’m seeing so many of the things I’ve done both in my recent as well as my distant past coming back to surprise me in so many wonderful ways that I continue to be astonished. People’s true colors have shone through – thankfully, most for good, but some have risen far above what I could have conceived. For lack of a better term, I feel truly blessed, especially considering the extreme circumstances.

Now that I’m physically attached to an IV pole that has the yellow chemo bag ensign only a few hours a day, I have been wandering about the hallways and tunnels connecting buildings in the Veteran’s Administration Healthcare complex. I’ve seen a lot of people who are in pretty bad shape and not all of our wounds are visible. Some of our guys are returning from war where the scars are in their minds, some are amputees, some are like me and battling a chronic or other long-term illness, some are traveling great distances to be here and just trying to get that ache taken care of. You can see it on the faces and that of their loved ones. And then there are those you don’t see.

Of the many evenings I spend here, weekends are generally when the patients who need a little extra attention or are en route to another facility show up in the acute care ward where I am. My first weekend as an inpatient was in a semi-private room and my roommate was an older gentleman who had broken his hip and was suffering dementia. Every single exhaled breath was a moan. I didn’t sleep well that night. I came back Monday for aggressive chemotherapy and that first weekend brought another veteran suffering dementia who didn’t have the presence of mind to use the nurse call, but rather shouted for help. Ear plugs were required for sleep that night. Again, last night, my next-door neighbor wasn’t suffering from dementia, but he could out-curse any sailor I ever met. I had heard him shouting for a nurse earlier in the day, but about 11:30 pm, he was at it again and even though my door was closed, he was shouting loud enough for me to make out every word, every epithet, and every threat. My naval officer training was pushing its way up and after about 30 minutes of his tirade, I was ready to walk next door and find out who thought he was the hospital’s most important patient, but about midnight, it finally quieted down.

Today, it has been mercifully quiet.  I can only assume that he has been given the extra milligram of the pain medication he had been demanding…or a lovely placebo. That, of course, makes me wonder truly what it was that he wanted: was he, like so many veterans here, alone and in severe need of someone to give some attention or was there some legitimate pain that needed relief? Or perhaps a bit of both?

Because so many people on staff know me by name now, it’s not uncommon for them to stop by and chat me up. One of the administrators who takes the brunt of people like the man who threw the temper tantrum yesterday has much more patience that I do with that kind of behavior (obviously the person for the job!) talked to me a bit today and put the event into perspective without going into any details. It drove the point home that this particular Club Med is for healing, even if sleep isn’t a high priority! It drove home just how compassionate and longsuffering the staff is. That’s something I knew already, but the people that are hard to understand, hard to communicate with, or hard to placate prove that there’s an unwritten part of the job description for the nurses and med techs that transcends mere compassion and extends to a kind of love for one’s fellow man that is nothing short of awe-inspiring. I’ve seen it, I’ve experienced it, and I’m grateful for it.

This isn’t something I asked for as a frequent flier, but it took being one to really grasp it both in the big picture and in its many nuances. It’s more than knowing someone’s name; it took sharing the vision of hope in a child; it took mingled tears of losing a patient, of surviving one’s own cancer, of the promise of retiring in good health; it took sharing a smile, of our mutual humanity. I can’t say that these difficult patients will understand the kind of commitment that the people who work in health care have for their patients and their career, but you can be assured it’s completely devoid of politics and completely full of the qualities that allow for healing and for a thriving and healthy community.

Today’s music is a blast from the past, but the lyrics seem to be both a tribute to my medical professionals here as well as a reminder to myself.  Argent’s Hold Your Head Up, originally released as a single in 1972.

And if it's bad
Don't let it get you down
You can take it
And if it hurts
Don't let them see you cry
You can take it

And if they stare
Just let them burn their eyes
On you moving
And if they shout
Don't let them change a thing
What you're doing

Transitions

I find my writing often skirts territory bounded by being a bit didactic and preachy on one side and TMI (too much information) on the other. Some of the things you think about from a hospital bed or even in your own bed if you’re pondering the joys of cancer may come across as a bit pretentious or pompous if not approached with the right balance of sobriety and sincerity; and navigating to that point may include material that could be considered icky, immodest, or downright inappropriate if not handled well. Such has been my challenge in presenting the day-to-day things I experience physically and work through mentally and emotionally. The biggest battleground for me has been in the mind with this thing called cancer.

Sure, I’ve had some bouts of feeling really lousy. There has been quite a bit of discomfort related to my treatment. There have been the headaches resulting from the stab-me-in-the-back (aka intrathecal) chemotherapy and spinal taps; there is the anemia that has caused a number of really inconvenient things, and the chemo sometimes just makes me feel really awful. In fact, during my first hospitalization, the induction chemo made me feel worse than I ever have felt in my life. Waking up seeing my mom dressed in a yellow paper gown at the foot of my bed and me barely able to register her being there is something I wouldn't wish on anyone. Of course, the alternative of not waking up at all doesn’t excite me too terribly much!

Today, one of those physical things was a bit embarrassing, if not a bit funny (you have to be able to laugh at yourself) as I dropped my car off for some routine maintenance.  I was walking out to meet my mom who was giving me a ride up to the hospital. I had my laptop and my gym bags both slung over my shoulder and carrying a cup of coffee in a cardboard drink holder. The wind blew a napkin from the tray and as I stooped down to pick up the napkin off the ground, the weight of the bags pulled me over backward and I landed flat on my posterior...I saved the drink for my mom (good son that I am!) but my weakened legs were unable to lift me back upright with the added weight. That’s hard for someone who pressed 300 pounds just weeks ago and cycled over 500 miles last June. But that’s reality right now.

Jim installing my PICC line. Not a real
pleasant procedure, but it's not bad either.
A little bloody as you can see.

Today marked the beginning of my second 28-day cycle. I begin another round of consolidation chemotherapy in the morning. To save me from becoming a human voodoo doll this week, I had my PICC line re-installed today. This time around, I saw the 3” needle that went into the vein as well as the ultrasound. Since my veins have gotten smaller, it’s not a really pleasant feeling. I understand that while in Seattle, I’ll need something called a Hickman port.  It is different from the PICC line that is in my arm as a Hickman port is surgically implanted in my chest, but essentially does the same thing as a PICC line. It allows the same function as an IV as well as blood withdrawal for testing. From what I can see in pictures, it allows me to flush it myself whereas the PICC line is in my arm and makes it pretty much impossible. It’s a bit uncomfortable tonight, but I much prefer that to getting stuck at least eight times (for labs and assuming that they’d leave an IV in for at least the day), not including the misses that inevitably happen.

On the plus side, after being here as much as I have, it was like homecoming week and I got the best room in the house. What’s just a little disconcerting though, is that the room I have is the room set aside for hospice care. It has a couple of things other rooms don’t have like a lot of chairs ostensibly for family. I have a lot of visitors stopping by, so that’s a good thing.  It also has a little microwave and a fridge like an extended stay. I guess that’s a good thing though in that I’ve never seen the room used and there are a number of beds open in the acute care area, meaning not a lot of people are seriously ill…and no one on their way toward checking out permanently.

And as I’ve said, I have no plans on checking out. But who plans on that sort of thing? Ah, the estate planning lawyers are slapping their palms on their foreheads and exclaiming, “Exactly!” about now, aren’t they? I did put together an Advance Planning Directive when I arrived for my first stay at the local franchise of the lovely Hotel California and as I spent the weekend doing a lot of spring cleaning, I realized I felt the need to have my affairs in order. During our weekly family coffee klatch, I was once again reminded pretty explicitly about exactly that.

No one should mistake responsible planning for a lack of hope, because in reality, it’s more likely that I get taken out by a distracted driver who is focused more on the text message that just arrived than me on my bicycle or crossing the road on foot.  That inch difference on the steering wheel could be enough to create one of those Newtonian physics problems where two physical objects don’t occupy the same place at the same time. I don’t have a lot of material possessions nor do I have any real assets where there would be one of those dramatic readings by some lawyer. Rather, making a few decisions now makes it far easier on those we leave behind. For example, I am an organ donor and I’d like to leave my mortal remains to the University of Utah to train doctors.  After all, I’m not using the body any longer. I’ve made that much clear to my family.  As for the details like who gets my personal possessions, I need to write that out. And the thing that got me thinking over the weekend is what happens to our on-line presence when we pass on? Unless we have someone take charge of that, it just stays there and becomes the property of some faceless person who doesn’t care. Something to take control of, to be sure.

So my public service announcement of the day is to have a plan for your passing. It’s not morbid, but rather the greatest act of consideration and love to those you leave behind. And it’s peace of mind for you. My battleground is not so much with death and dying even though that is certainly part of my thought process for obvious reasons, but the getting from here to there. Because my doctor is now maintaining me at remission so that I can be ready for the transplant, my mind wanders to the next stage in the treatment: the actual transplant.  While the technical side of that is pretty well understood, in that it's in another state with a different medical staff than I've grown accustomed to, and the literature I've read from that VA hospital is rather impersonal (bordering on strict), it has been intimidating. I recognize that there are a lot of things that will be cleared up once I arrive and there will be a whole lot more positive than negative once I've gotten acquainted with the people and the process. Until then, it's hard to keep the mind reined in.

The big clock on the wall says it's time to turn in, so enough for tonight.

Music for the day - "Sleep" by Eric Whitacre.  If you've never seen the YouTube videos of Eric Whitacre, they're fascinating.  They're combinations of hundreds of individuals who contribute on-line.  If you liked this, the one that is absolutely haunting is Lux Aurumque

Be well, stay strong, and much love to you all.

A Day Without Rain

Utah is an arid state.  We have some of the most beautiful red rock deserts and the winter snow is the most powdery in the world (in my humble opinion...and that of the chamber of commerce).  The “greatest snow on earth” isn’t just a nice tag line for our license plates, it’s enough to get a certain circus upset at us because it sounds a bit close to another famous tag line!  The arid climate that produces the world famous powder has another effect in that we don’t get a lot of rain, so there are numerous reservoirs around the state to ensure we have adequate water. Back in 1983, there was so much snowpack in the mountains around Salt Lake City and so much rain in the springtime that the flood waters were diverted into some of the city streets. The Great Salt Lake got really close to the airport as it had no place to go. That is, after all, why it’s so salty. Despite the floods, enterprising people made the most of the flood and I can remember a picture in the newspaper of one restaurant with a sign, “you catch it, we cook it” on State Street, Salt Lake’s main drag.

State Street, Salt Lake City in 1983

I’m not really writing about water, but I use the picture to illustrate a day in the life, so to speak. I tend to be able to hold a lot in. Not much fazes me and it takes a lot to get me riled. Once I am, it takes a while to calm back down. If you treat each  of these trials or inconveniences I face in working through cancer as a rainstorm, you might say I’m very much like one of these larger reservoirs. It accumulates and it evaporates or flows downstream over time.  Not a big deal. The problem is that there are a lot of rainstorms lately and I’m finding that the reservoir is rather full and it doesn’t take much to overflow at this point.

And this week has felt like the times that “try men’s souls,” well at least my soul. And like the illustration above, it’s not that there has been one particular thing that has beaten me down, it’s just that there’s a lot coming hard and fast.

In talking with my hem/onc this morning, I don’t feel as restricted as I did, but there seems to be less certainty of anything. This is more about the art than the science because the lynch pin in treatment is the transplant, which is something, by his own admission, where he's not an expert. That expertise resides in Seattle. So, if it works as planned, then all the great statistics prove true and everyone will be clinking their glasses together with big smiles, myself the biggest of them all! Between here and the toasting is a series of big question marks. Part of it is timing, part of it is identifying a willing donor with as many matching HLA markers as possible, part of it is how my body responds to the new stem cells, and part of it is just plain dumb luck.

It’s difficult to comprehend this all in reality, not because it’s unknown, but because there are several uknowns. Yet, despite the stark language of lab reports, the non-committal verbiage of the reference materials, there are many, many survivors. And this is the silver lining to that big rain cloud: I seem to be coming across a lot of them lately, some of whom I didn’t realize were in my new exclusive club. And it’s not that I couldn’t talk with friends and family, but there’s only so far you can go with someone who hasn’t been where you are. And that’s a difficult place to be because you want to badly to be able to pull the closest people to you into that inner sanctum, but you don’t want them to have to go through what you are in order to understand it. Yet that is sometimes the only way to relate what’s going on in your chemo-brain addled, emotionally fragile, frightened mind! But neither would I consider paying someone to be my best friend, even if it were covered by insurance. Only someone who has walked a mile in these shoes can fully comprehend what it is that I’m feeling…and for me, face-to-face is the only way to communicate that much-needed depth.

The VP of business development where I work connected me with someone who has been in remission for about a year. I spoke with him this morning before my doctor’s appointment. The ease at which the conversation flowed reinforced that need and I will have someone I can talk with locally. When I checked in for my appointment, the nurse who took my vitals and I struck up a conversation and instead of the 5-minute perfunctory exercise in numbers, we chatted for almost 20 minutes and ended up crying and hugging each other as she was a survivor since 1992. Just before the doctor came in for my appointment, another nurse who was with me the day I received my diagnosis gave me a huge listing of resources from the Leukemia-Lymphoma Society. I stopped by their offices because I had an errand nearby and found that they have a program for exactly what I needed – another local leukemia survivor that the LLS matches specifically to me with whom I can just talk. They also listed support groups near my home.

For me, the flood waters aren’t extreme, but I’m still doing my best to be enterprising and positive (although I'm not cooking your fish...I'll help you eat it if it's a particular geometric shape though and dipped in beer batter). Again, that’s how I’m wired, but it’s a long rainy season ahead from everything I see. You can be assured that the jokes, the smiles, and the positive, if not offbeat, attitude will still be there amid the rainstorms, but if you’ve ever been caught in a cold rain, you know how miserable it can get…and how really comforting it is to be taken in to be dried off and warmed up. I can’t thank enough those of you who have opened your hearts and made a place by the fire for me. OK, so I mixed my metaphors a bit, but the point remains that this is tough, it’s going to be a long haul, but your continued love and support will make it bearable.

Today's music - Enya's "A Day Without Rain"

Be well, stay strong, and much love to you all J

The Battle We Didn't Choose

The things I often end up writing about are spin-offs from thoughts I have while awake in the darkness of the wee hours of the morning, when I have nothing going on around me. Typically, the only things I hear are electronic sounds from the nurse’s station or snippets of conversation as people pass my door. There’s no interruption from someone taking my vital signs, a gaggle of doctors, the phone, or any other mundane detail. It’s just me and my thoughts. The more ‘normal’ times come from conversations with someone or a Facebook post that, for whatever reason, resonates with something I’ve been mulling over – probably in the dark between 3:00 and 5:30 am.

I want to share with you a video that was the impetus for this posting. It’s one of the hardest things I’ve watched, but I felt a kinship with the subject of the video even though I know that every case is different. Mine, by comparison must be a cake walk! The photographs as a subject of art, portray the feelings I have and deal with in a very raw but beautiful way. Photographer Angelo Merendino documents his wife, Jen's battle with breast cancer. The video discusses them, but the web site with the actual images is here. He also has a YouTube channel with a few other videos here.

7:45 a.m.. Lots of waiting. Take a
number. "Now serving number 8...
thank you!"

One of the overriding themes I’ve continued to wrestle with is how it seems that most people don’t want to acknowledge bad things that could potentially befall us. We use euphemisms or abbreviations lest we say the word and it takes root in us and we become afflicted! We refer to cancer as “the big C,” or say the word sotto voce, or perhaps we just say that someone is really sick. Mind you, I don’t really care to talk about unpleasantries any more than the next person, but just like death, this is part of life. Everyone has to deal with a crisis now and then and dancing around the issue doesn’t help the one going through it.



7:50 a.m... "Where again do you want
me to draw blood? Oh, that arm looks
wasted." Uh yeah, Three missed sticks,
a bruise, and a small hematoma. Try
the other arm, please. Honestly, I'm
not a drug addict...it's the chemo. Good
luck, Roxanne!

I’ve had to work through a few pretty difficult things over my 50-year life and dealing with cancer now is without a doubt, the hardest and most traumatic yet. The fallout – notwithstanding my hair! – has been extreme in a number of ways, but it has been easier to face because those people who have been through this and shared their experiences with me haven’t pulled any punches.  They’ve been pretty direct in telling me the truth. And the truth is rarely soft and wrapped in white satin. More often than not, it’s messy and it hurts, and it may be a tough pill to swallow. But, it’s the only medicine that will ultimately restore you.



My poor left arm! the picture didn't pick up the scars quite as
well as you can see them. It's a great conversatin piece though!

Facing the truth, we still have to make the choice of calling that glass either half-full or half-empty. The truth doesn’t change your attitude. Only you can do that and if you’ve read my postings, you know where I stand on that. The truth may make me cringe or cry or feel fear, but attitude can help me stand up, wipe the tears away, and put on a brave face. It can also kill you if you let it. It really is that important.





11:45 a.m. Numbing my spine for
some toxic chemical goodness.
Gives "feel the burn" a new
meaning, huh?

I’ve poked fun at the things I’ve dealt with since the prospect of having leukemia – a blood cancer – reared its ugly head. Humor is how I cope with the ugly truth of what’s happening.  I’ve been open and honest about my feelings of intense gratitude for the people that have and continue to come to my side. I’ve had a lot of laughs in spite of how I’ve felt and put on that best smile whenever I could. What I haven’t said a lot about is the stark, painful side of what cancer is all about.  Yeah, I’ve seen the movies and there’s something to be said about the dramatic license employed by Hollywood to sell tickets because the cool part about this whole thing is that the human spirit will win, even if the body dies. And that always makes for a good story. Seriously, though, no one wants to see real pain. No one wants to walk a mile in these shoes. It’s just too easy to whisper the word than say it out loud and acknowledge it's there.





11: 55 a.m. In nature, yellow is often
a color that tells a predator to find
something else to eat. Well, yellow
is the same color to tell people in a
 hospital that this is also dangerous
- chemo. Nice thought as it goes
directly into my spinal cord! Isn't
that special?!

I get it that it’s awkward and that those of us in the hospital bed don’t care to be reminded that we’re sick, but that elephant in the room isn’t going anywhere. Let’s recognize he’s there and let him move on. So, why talk about this rather dour subject? Well, I should say that first off, I’m absolutely not fishing for sympathy, but I think it’s important to know what this thing called cancer is all about. Again, thanks to Hollywood and maybe a friend of a friend of a friend, we have an idea of things like chemotherapy, radiation, hair loss, and surgery to remove tumors, but what most people don’t hear about is how the diagnosis stops your life in its tracks, the hassles with the insurance company, the prospect of financial ruin, the impact on family systems…and that’s before the patient actually hunkers down and starts dealing with the needles, IVs, and ports; the endless tests and samples required, the pills with names I can’t pronounce, and their side effects which I can pronounce (and the other meds, more of which I generally still can’t pronounce, that counter the side effects). Then there’s the hair loss, which although you know about and expect, is really still traumatic, especially for women; and there’s just the feeling really, really sick or too weak to walk across the room to the bathroom, the lethargy, the diarrhea, the nausea, the painful procedures like biopsies where they drill into your pelvis for a sample of marrow or cut off some flesh, or even drawing blood from the veins that have receded because of the chemo; there’s the weight fluctuations, and the food that otherwise would be delightful suddenly smells like sewage – another delightful side effect of the toxic chemical goodness.

12:05 pm - Mercifully, all done. This
was the last episode of that mini-series,
but there's more fun awaiting! And
seriously, does this chuck pad on my
 back make me look fat?

Again, I don’t want to elicit sympathy from anyone. It’s just what I deal with right now and the brave face often belies what I felt just an hour ago. My mom can tell you how bad it was during my first round of chemo where she had to don a yellow gown before she could come and I was barely able to stay conscious. Not a pretty picture, but it was an honest one. Today, I feel good and am at home. I check in with my family twice a day so they know I’m OK. I monitor my blood pressure, my temperature and weight and have a miniature pharmacy in my bathroom full of lovely antibiotics, antivirals, antacids, and some basic Tylenol. Tomorrow could be different.

My hope in all this is not that there's guilt imparted or that you treat me or any other person dealing with an illness differently, except rather with honesty and authenticity. What we all crave is what you take for granted, what we took for granted before we started our odyssey into our illness. We just need you to be you and sometimes that just means being there and holding our hand. And for the generous gift of your human touch, for staying with us over the long haul, we thank you.



This picture, very simply and eloquently captures the basic need of any of us. For for someone who is fighting a long-term illness, it's like an antibiotic. Photo credit - Angelo Merendino - http://mywifesfightwithbreastcancer.com/



Be well, stay strong, and much love to you all.