A Story - Feelings of Cancer [non-hodgkins Lymphoma]

Rice6roni

Once you’re in it, it’s like: All right, I can do that. I did it. I had that sense of accomplishment for my part, as microscopic as this

was stacked up with the efforts of my Doctors and Caregivers. I felt as though I had been conditioned for that situation, as weird

as that may sound. Much of my parents' strict upbringing, mental strength summoned as a byproduct of an athletic childhood

through sports competition (putting on your uniform, getting your game face together, and only playing to win) and my year stint

at the Coast Guard Academy having learned that focus with a willingness to improvise in the face of perceived, impending

defeats all played a strong part in finding minute pockets of hope to sustain me. Surrounded by the support and relentless giving

of Family and Friends, what was left was the fate God had delivered me.

 

Many imagine what they might do if presented in a like situation, as I had done many times in my early life. Truth be told, what

you imagine and what your reality will be when faced with Cancer's game plan are incomparable since your mind resides in two

incongruent and different galaxies. The totality of the event represents a disparity of comparison. As a patient submersed in the

cancer journey, each day is customarily a battle event with incremental battles within. I lived a day at a time just wanting for the

evening to give way to dawn, an anxiety that was followed by yearning for daytime to turn to nighttime. Some days were

severed into more increments, sometimes broken down to just the next hour. Sprinkled between these cycles were the incessant

pills, treatments, pain, nausea, tests, operations, and feelings of aloneness. The aloneness, partly physical since the world

continues on in your physical absence but mostly mental since your unspeakable thoughts are recognized as such as they are

occurring. My journey would be stripped down to my inertial preparedness and whether I had done enough to make a difference

in subduing, to some degree, the rocky road being driven. Without these compartmentalized habits and abilities, the very thought

of the total picture would subdue you into extreme anguish.

 

Your character, personality and dignity that were your identity are not lost in all of the cancer chaos. Sometimes it is buried just

below the surface and is revealed in the toughest moments in the funniest ways. For me it was evidenced during some of my

lowest points in the cancer journey, where hope and faith were truly being tested. I remember watching a favorite Discovery

Channel TV show that seemed always to be airing. Laying on the foot of my bed, isolated in my own anguish and in a thick

queazy state, I was watching an episode of the Deadliest Catch. These were crazed fisherman in the midst of the Opilio Crab

season in the hellacious Alaskan Bering Seas. Sig and Edgar Hansen on the Northwestern, the Hillstrand brothers on the Time

Bandit, and my favorite, kick-**** captain Phil Harris (RIP) with his sons Josh and Jake (my sons, coincidentally, bear the same

names), with their mischievous crews of misfits who continuously endured unrelenting seas and foul weather. They achieved the

most difficult of tasks through their efforts, fishing skills, and outright courage. The challenges that were thrown at these crews

were so absolute and so daunting that no person in their right mind would step on deck with the fiercest of seas, frigid weather,

and continuous showering of salt waters, let alone be able to fill their ship holds with crab and journey back to port alive. I

remember thinking about what these supermen endured and said to myself, "poor bastards, I was glad I wasn't in their shoes".

When I realized where I was and what I was feeling, I had to laugh out loud. I was happy at that moment that I wasn't so selfabsorbed,

wasn't buried in self-inflicted anguish.

 

That moment illustrated that I still had my self dignity, something that I had thought I'd been stripped of much earlier in the

Cancer journey. I identified with the circumstances surrounding the episodes (I know how this sounds … I'm really not a groupie)

and embraced that fact that the unfathomable (no pun intended) did not translate to impossible. Readied with hope, willed

perseverance, and a laser focus on the end goal, anything could be achieved. Just wanting it with all your being and it will be

yours was my mindset. This would be my "Feeling of Cancer".

 

On another occasion, having just arrived home from the hospital after a splenectomy operation, I went into the bathroom to see

what damage this episode had provided to my middle-aged body. When I saw the 40+ staples holding my gut together, I

immediately dialed my dad to share the news. I just wanted to let him know that I was still kicking the can down the street. He

had been the one I had called a dozen days before, to deliver the news that my MRI results showed that the past 25 or so weeks

of chemo had not yielded the ultimate results I was planning on. My spleen had been enlarging with one or two new tumors. I

was entering a chapter of resistance to chemo.

 

Completely drained of "wishful thinking", I had broken down and cried publicly for the first time. A Bone Marrow/Stem Cell

transplant was next on the Cancer hit parade for me after the removal of my spleen. The outcomes and potential after effects

would be more extreme than I had wanted to wrap my brain around. Dad assured me I needed to focus on getting through this

next chapter and stop worrying about getting myself back to work. So I called to say I was ready to go, that my spleen was now

history and I needed to break the news that my career as a surfing model would never come to be. I told him that I was looking

at the staples tracking down my left side and said that it looked like I was being chewed up by a shark. In a split second, without

an indication of hesitance, Dad said, in his matter of fact, dry humorist way, "Then get Back in the BOAT!". It was at that

moment that I realized where my abilities to compartmentalize and visualize positive outcomes had evolved from.

 

Years later my daughter Jacque shared with me her pre-game routine (she's a Division I player). Prior to every soccer game she

would look into the stands and pick out someone she did not know. Throughout game competition, she would picture that person

and play her best to impress that person, who, unbeknownst to them, had provided the imagery for Jacque to provide her best

performance on the field that game. I'd like to believe, in some small way, I had done my part in passing down a family trait

that I had learned surreptitiously.

 

So, several days after the splenectomy, I was fitted for my Hickman infusion port for upcoming chemo deliveries and blood

draws that would eventually be almost continuous. As I arrived home from the operation that installed this latest, enigmatic

device (I mean who thinks this stuff up), my kids were huddled around the TV in our loft just outside the entryway to the master

bedroom. They provided a hug as I topped the stairs and I went directly to my bathroom to decipher what potential modeling gig

I would certainly never be considered for due to this latest disfigurement. The Hickman pump looked like a cows utter. It looked

nothing like the porta-cath that had been removed from above my left breast several days prior to my splenectomy. This one

that now protruded from just above my right nipple had three 4" Broviac catheters that hung from me. I discarded my shirt, took

a quick gander at this newly acquired foreign appendage and almost instantly thought I should utilize this as a life lessen and a

parental sharable moment. I was delighted when I got positive responses from my kids sitting out in the loft. They were up to

seeing my latest acquired medical hardware. This was a great sharable moment because I knew it would relinquish some fears

my kids may have had this go-around, but I'd also be lying if I didn't mention that I wanted to use this moment for some selfish

purposes. As I reappeared from the bedroom, shirtless and with a broad smile on my face that the kids hadn't seen for some

time, they looked carefully and asked some pointed questions about what it did, why I had it, etc. Once the questioning session

ended, I fervently proclaimed to them that they should be forewarned …. "THIS is what it looks like when a body piercing goes

bad". I recognized the requisite and anticipated teen-ager eye rolls as I headed back to the bedroom. Undoubtedly, the lasting

image they had of what the Hickman port looked like would be ingrained in their memories now and it would be a cold day in hell

before they could ever consider piercing their bodies. Teenager peer pressures be damned!

 

It was interesting what was important to accomplish in case all did not work out. There was some sense of "Beat The Clock". In a

way it was eerily like the procession from funeral home to cemetery when the gatherers pass the deceased's old haunts along

their way to the grave site. I wanted to get an eye on the places I had the fondest of memories, really they were more of

feelings. Where I grew up was understandably high on the list, as one would easily expect. Fire Island Beaches were part of the

tour. Lake Placid was high on the list more for what that place represented than the town itself. It represented memories of a

friend who had passed some years prior, not as much for his passing event but more for the feelings you have while enjoying

great times and the company of such a great friend.

 

It was the feeling of appreciation of that area of New York that I had connected to through his insights …. through his eyes. It

represented the spirit of a younger me. The aspirations I had in growing our family and in providing for them. I needed to be

immersed in that feeling of future promise and peace coupled with the piss and vinegar a Long Island (NY) boy (and girl) can

only probably relate to. With some casual thought of what you mentally go through when journeying through cancer's pastures, I

noticed that Hope and Faith were less obvious feelings and beliefs that predominantly dominated my thoughts throughout the

trip. Most would expect these feelings to be important but given all the poking, prodding, the pain, and uncertainties you

experience, I believe most would expect other thoughts would take more of a center stage. What I tried to do is shut out the

obvious and allow Hope and Faith be the overwhelmingly majority of my being, allowing them to dominate instead. Having a

bone marrow biopsy and the pain that this process produces, I would force myself to ignore what I knew and what was

happening to me. The Long Island (NY) in me did take flight.

 

In my head I would recite Billy Joel's lyrics, over and over, while resisting and denying such unbelievable and unfathomable emotions:

"Some people hope for a miracle cure

Some people just accept the world as it is

But I'm not willing to lay down and die

Because I am an innocent man "

 

Now I'm not particularly a religious person (my mom and wife would agree), nor am I someone that most would consider to be

immersed in music, so it was intriguing to me what surprisingly reveals itself in the most uncomfortable moments. At a point, on

the occasion of yet another Bone Marrow Biopsy, I had my MP3 player with headphones blaring. As I was reciting this snippet of

lyrics by Joel (it became almost a ritual during these procedures), I was listening to Darius Rucker (Hootie and the Blowfish)

singing Hold My Hand and I allowed my mind to wonder thinking how cool it would be to have Joel and Rucker perform together.

When the Dr. nudged me and asked what I was listening to, after I had answered, her next words were miraculous to me. "You

can pull up your pants and if you'd like I can show you the specimen we just took from your hip". As painful as I knew and had

fearfully anticipated this appointment, my mind had denied any consideration of pain during the procedure. It was as though the

brain had shut down the nerves surrounding the aspiration site. The phrase "Don't give it another thought" really hit home for

me. It was not like I had willed it to happen. It was more like I stumbled upon it and noticed what had just occurred. I

consciously noted at some point that it felt to me that the gaps between Hope as a feeling and Faith as a belief became lessened

during this fight with Cancer.

 

I admit this may sound like a very strange point. I'm not sure that I can effectively explain or interpret these ideas. I will do my

best to try to explain how this notion came about in my head. Having effectively compartmentalized and exercised making

intuitive light out of these events that were happening to me, that were beyond my control, I leaned on using imagery to believe

the best outcomes possible would win the day. With this Hope, an almost indignant Faith would mount. Hope as a causation and

Faith as its effect appeared to meld into one. Mentally, I would work through the facts and understand them as best as I could

while not diving too deep into the nonsense you can get lost in on the internet. A good physician, I have found, will sense your

level of anxiety and will only tell you as much as you can handle. When the time comes for "your next feeding", you get the next

batch of information to squelch your appetite. This was so uncharacteristic of what I believe a fighter would be. A friend of mine

(I'll call him Brian - because that's his name) who had returned to work just prior to my departure after his successful bought

with Leukemia provided priceless insight and tricks to follow early on in my illness. It re-constituted my vision of a fighter. His

insights short circuited the anticipatory stress I know I would have contrived. He told me I needed to find a doctor I could trust,

that holistically understands me, and then allow him/her to keep me as informed as they think I could handle. Ask questions but

leave enough inquiry for another day. Don't dig too deep. You'll need your energy for more important things. Thanks Brian. You

breathed sanity into an otherwise insane experience for me. You'll never know the impact this had on me and my family.

 

So with all my facts in hand, I found a way to distract myself from my 3 week visit to Cancer camp for my impending stem cell

transplant. Yes, I was fitted with a positive outcome mindset. For me this translated to not having to worry about the other

techniques should this latest challenge not kick the Cancer. That outcome would need to wait for another day should this rotation

not prove to yield the ultimate results I was planning on. As a worrier, I would find a practical worry to focus in on (a distraction)

that would mask what any sane patient in my circumstances would have concentrated on. How on earth did I think I was going to

stay in one place for 3 weeks, let alone, at times, in isolation? By pushing this challenge in front of everything else, I leveraged

my known behaviors and truly got myself in a lather over what I was going to do to occupy my time for the 3 weeks I would be

in sequestration. After all, I had never taken more than a week of vacation at a time. Three weeks stuck in one place would be

my nemesis. And so it went. In a funny way, the possibilities seemed to be endless. It sounds out-and-out funny to me now but

at the time I was relieved to utilize the time as best as I could. What was missing was the fact that I would be pumped with

chemo, obliterating my immune system, re-establishing my disease fighting capabilities with the collected stems cells that were

procured from me some weeks before, and then watching and monitoring my responsiveness. A hell of a way to spend

Christmas and New Years but the timing was yet another indication that I was only along for the ride.

 

So I prepared my distractions. First on the list was studying for the Project Management Professional exam. I had never been

officially certified but, having provided PM services before, it was something I thought I should add to my resume. Amazon

provided the books so I packed that away for my cancer vacation. Next was some old TV shows. I really couldn't afford (or

justify) the more contemporary TV series but figured that Moonlighting would be fun to run through from the 1st episode to the

last. This would be achievable in case I wasn't up to reading and was conducive to lying in bed. And then there was the guitar

lessons I had wanted to take that had never materialized. Out I went to get an electric guitar with case and lessons that I would

load onto my Apple laptop. Oh, but who knows what time of day I would want to strum a couple chords so I'd need a plug-in

amp device that connected to headphones so I could rock. The last thing I wanted would be to be embarrassed on how bad I

might be those first days I was in the hospital. Surely by the end of my stay, I'd be ready to go on tour. The flight simulator

would also help to bide my time and a 19" monitor would need to come along with me to enhance the graphic visualizations

within my anticipated accommodations. Lastly, I agreed to maintain my daughter's club soccer team's web site. This would keep

me somewhat connected with the outside. As I write this, I recognize how that sounds; like I was headed to prison. In

retrospect, that was exactly the feelings I was experiencing. I just wanted to survive the feelings of confinement. This was ALL

that I would allow myself to think about and I allowed all these distractions consume me. When "move-in" day came, a truck

would have helped to cart all that I was going to "need" for my Cancer Vacation. The hour and a half trip into Philadelphia

seemed to take forever. Many memories of this experience have been engrained in my mind and, surprisingly enough with the

passing of time, the tough memories do seem to fade in extremeness. The mind is a funny thing and I suppose memory and

imagination help you remember times that make you feel good, an embellishment of the good to drown out all the bad. Those

times that were hard are more readily obscured and as time goes on hopefully forgotten.

 

The faces of the seasoned professionals on the cancer unit at Fox Chase (that most would imagine had seen it all) had the

broadest smiles that I'd like to think were deeper than the norm. I grew to love laughing, first and foremost at myself. So it was

a very welcoming arrival for me since I sensed these smiles were ones hiding laughter AT me as much as they were in

welcoming me onto the unit. In the least, it cut the tension of what I anticipated would unfold. Nothing in life can prepare you for

these types of medical treatments. I vividly recall all the staff that took extreme care of me. My practice of trying to stay up late

at night so that, when able, I could walk the floor for strength and exercise avoiding germs of others on the floor (thanks again

Brian) was where I wanted to focus. I soon looked forward to the nursing staff visitors that would stick around a little longer to

talk about sports and current events. To any, these appear to be such seemingly small events and gestures yet these are what I

will remember for all my lifetime.

Mary N.

about

Ah Rice

 I related to much that you said.  I was too old to have a transplant but have been on chemo for the last 4 1/2 years, every 6 weeks at first having to go into the hospital for my stay for a week or so.  I at first took things to keep me busy but ended up finding out that I prefered to talk to real people, even if just for a minute or two.  I also spent my time trying to get out of their clutches and take walks.  I preferred to go outside and walk, they preferred me to stay inside.  After the first year, I won and I would walk when it wasn't too hot or cold outside.  By then I wass much stronger and my walking was more stable. At first I brought the pictures I plastered the room with of my kids and grandkids, etc.  By the end, I just brought my serong (or however you spell it) to wrap around my middle as I walked when not actively getting the actual chemo which only took 4 hours.  It was like a prison indeed and in these years it has never changed.  I steel myself for boredom but usually find that people want to talk.  I am lucky, at this point Stanford says I'm not going to need anymore chemo.  Just the MRI's to check my brain periodically.  There was even mention of getting rid of my port which delights me and terrifies me at the same time.  Wishing you health on your path and transplant.  Blessing.

Mary

jimwins

Mary N. said:

about

Ah Rice

 I related to much that you said.  I was too old to have a transplant but have been on chemo for the last 4 1/2 years, every 6 weeks at first having to go into the hospital for my stay for a week or so.  I at first took things to keep me busy but ended up finding out that I prefered to talk to real people, even if just for a minute or two.  I also spent my time trying to get out of their clutches and take walks.  I preferred to go outside and walk, they preferred me to stay inside.  After the first year, I won and I would walk when it wasn't too hot or cold outside.  By then I wass much stronger and my walking was more stable. At first I brought the pictures I plastered the room with of my kids and grandkids, etc.  By the end, I just brought my serong (or however you spell it) to wrap around my middle as I walked when not actively getting the actual chemo which only took 4 hours.  It was like a prison indeed and in these years it has never changed.  I steel myself for boredom but usually find that people want to talk.  I am lucky, at this point Stanford says I'm not going to need anymore chemo.  Just the MRI's to check my brain periodically.  There was even mention of getting rid of my port which delights me and terrifies me at the same time.  Wishing you health on your path and transplant.  Blessing.

Mary

Thanks

I could relate to your story too, Rice.  Thanks for sharing.  Mary, I'm glad you won't need anymore chemo.  I can't imagine being on chemo for 4 1/2 years!  I hope to get my port removed later this year, marking my 3 years remission. 

Hugs to you both.

Jim