Tag Archives: brain tumor

The Normal Translation

22 May

I have spent the majority of this day and last night’s eve contemplating my feelings of exhaustion.  Especially as I have had the good fortune of receiving more than an adequate nights sleep, several nights in succession.  Mind you, I am continuing my ‘full function’ of the days activities, but all the while dealing with the feeling of needing a nap.  The ideas I wrestle with are as minimally invasive as ‘do I need to take vitamins?’, to the more intrusive, ‘perhaps I have cancer’, thoughts.  To which I answer in the following manner; ‘if I do need vitamins I’m out of luck because I never follow through with taking them–yuck!’ AND, ‘if I do have cancer eating away at some part of my body, then I guess I’ll be dead in about a year.’  I know, I know, not exactly the type of “proactive” mentality I normally purport having.  I assure you, however, I examine my answers utilizing the most lighthearted thought process even though what comes forth resembles a rather melancholic tone.

At any rate, tonight I have discovered the source of my sandbags, the dip in my dew, the dent in my hull…otherwise considered the cause of my fatigue.  My new “normal” lives cautiously afloat the fragility of the health of my son, Cole.  And in my constant attendance to his well being, whether that attendance is in thought or deed, I see that I shoulder an amount of emotional stress which translates to–or manifests as–the demise of my stamina.  For instance, the fixed appointments of the day had to be cancelled due to Cole having had a hard night, last night.  His hard night was a result of severe nausea and abdominal pain.  And today, he tells me he has back pain and his symptoms increase when he lies down–the upset stomach symptoms.

Now in families where there has not been the trauma of a brain tumor thrust into their “normal”, nausea and abdominal pain equates to the flu or food poisoning…or quite possibility, appendicitis.  But not in my normal.  In MY normal, severe nausea and abdominal pain with an increase of symptomatology upon prostration means….need I really point it out?!

Entonces aqui estoy sentado al lado de mi hijo tratando tener confianza, fe, y esperanza en lo que no debe ser mi ‘normal’.  Espero que el tiene el gripe y nada mas.  Pero aqui estoy sentado, mirando, esperando, finjo tranquilidad pero con la sabiduría que quizas mas tarde o mañana vamos tener que visitar un doctor.  Y con ese normal, es dificil sentirme tranquilizo.

Did you catch that?  If not, the base of the meaning (though you can cut and paste into an online translator if you so desire), is that my norm is in constant motion.  And though I sit here on my couch wearing the appearance of docility, I am actually a good example of Newton’s laws of motion…perpetual and constant.  Which can quite possibly have a draining effect.  And being I have this new realization or epiphany (choosing to use the word wrapped in religion vs. simply derived from the French language), I will stop my ignorant complaints, for knowledge has filled the void of ignorance and to go about my days in wonderment as before, would be to act the fool.  ‘Oi Vay’… a tired fool is the worst of its kind!  And we don’t need a translator for that–she looks the same in any language! 😉  No, that will not be me.  I will attempt to embrace the fatigue and contemplate it no more.

“the sweet surrender to Norm”

**for those of you receiving this update on iphone or through email, I do have a youtube song attachment included.  …Enjoy!

Tags: , , , , , ,

Pushing Mediocre

10 May

I admit it, I am in a serious battle!  The battle?  Fighting mediocrity.  Not for me, mind you.  For my son, and for my daughter.  For my son, Cole, the medicinal world wants to offer him a text book answer.  My job is to not accept the pat answer, but to advocate for my son’s life, and in the process challenge the doctors who come our way to get off of the chair and investigate the options.  For my daughter, the adolescent world wants to chew her up and spit her out “common”.  “Common” meaning devoid of her spark, her gifts, and her standards.  My job is to encourage her to rise above the robotic thinking of the teenaged mind, while providing her solid truths to keep her focused on the bigger picture–the adventure of life.

Today, Cole and I met with a neuro-opthamalogist.  It was a long awaited appointment.  Cole’s most significant sufferings come from the problems with his eyes.  All of which are present due to the cranial nerve damage resulting from the tumor resection.  In fact, because of Cole, I have learned so much about the anatomy of the eye–and how integral moisture is to its health.  Our tears are paramount to the entire functionality…more accurately, the physical functionality of the eye ball itself.  But let me tell you, if your physicality of the eye is impaired, guess what?  So is your vision.  So keeping Cole’s eyes lubricated is of great importance and him not producing tears is a real, and serious problem.  Yet the only solution offered today, from the “specialist”, was to insert gold weights into the eyelid to help bring the upper lid down, thus covering more surface area of the eye, which would help hold in the artificial tears Cole uses every 15-20 minutes (in addition to the gel he uses in the morning and at at night and on breezy or windy days).

Gold eyelid weights…a pat answer.  We’ve heard it before–we’ve perused the thought, the practicality of the procedure, and the risks and benefits.  Been there.  So I asked the doctor today, “Is that all you’ve got, really?”  He looked at me a bit bewildered.  Then I probed his superbly intellectual mind for possibilities.  “So doctor, tell me, is Cole’s Lacrimal gland still producing tears?”  His answer, “yes”.  So I continue, “Then let’s explore how we, actually you because you are the one with the knowledge, the gifts, and the access, can find a way to bypass the non-functioning cranial nerve five and redirect the signal via another route.  In other words, if the tears are being produced but just lacking a messenger to tell them to fill the eye, let’s find another messenger.”  And since I was fired up from having a lovely cup of coffee before our appointment, and because Cole was lower than low due to exhaustion and an hour wait to see this specialist, I continued my probing…  “What about accessing liquid from the salivary glands and channeling them up to the eyes?  Or is there a way to utilize the flow from the naso-lacrimal duct?”  (FYI: because of having such a long wait for the doctor, I was able to study the eye anatomy chart for quite some time, much to the ‘surprise’ of our specialist I’m sure!)  At any rate, as I was spewing out ideas with the impetus being “hey, this is a twenty-one year old kid with his whole life ahead of him and all you’re going to offer is gold eyelid weights?”, something began to stir withing our long awaited neuro-opthamalogist.  He all of a sudden had a spark in his own eye–the spark of excitement.  He began to see the box in which he sat, and it was as if, simultaneous to my denouncing of it, he began to tear it down himself.  The possibility of looking beyond the mediocrity of the day was stirring within him.  And you know what?  This story is just beginning.  We are off the line, wheels are turning, engines revved and running.  But as every seasoned driver knows, there are road blocks ahead.  And they pose no problem.  For we will meet them and challenge their presence…or at least I will, and by default, the I turns to we.

In addition to the aforementioned innovative process, the mere excitement which comes from bouncing ideas off of one another builds trust and confidence within the working party.  And as a result, Cole was set up with a product that was entrusted to us in a “hush hush, closed door” type of manner.  A product that usually takes quite a while to procure for patients due to its high cost and low demand.  A product which could aid in the regeneration of brain to eye communication–for that, we are keeping our fingers crossed!

The final step of today’s appointment was that we were to be given instructions for a nighttime patching system.  Now as we were wrapping up the already extensive meeting with the doctors (yes, we had more than one toward the end of our visit), I was given a gift.  The pay off, if you will.  For instead of having to endure more time in the clinic than was already invested, the specialist turned to his associate and said, “I have no doubt these two know exactly how to put it on (the patch system).  I trust them;  just get them the supplies.”

We are settling NOT for mediocrity, the ordinary, nor the average–which is why I must drink more coffee!

A fitting funny courtesy, “NYCitylights.wordpress.com”

Tags: , , , , , ,

Running From Fear

1 Mar

My title is a little misleading.  The reason being is that I am not wholeheartedly committed to keeping to the topic of fear, for this particular posting.  But knowing from past experience that I could trouble myself for far too long regarding a title, I decided it would be better to land on one and move on.  So that is what I did.

A few updates on Cole.  He enjoyed his trip to Nicaragua.  He mostly ate and rested, but the climate (humidity and sun) did very well for his eyes and body.  And he very much enjoyed, appreciated, and took note of the warmth of character emanating from the general populace.  Which in turn, warmed his heart.  He was definitely ready to come home and he has not wanted to have fish since being back.  Fresh fish and fresh veggie’s, sounds like an eating utopia to me!
We have begun the VA process.  What that means is they are taking over responsibility for his medical care, and we are learning the ropes between our local clinic, the Long Beach VA facility, the West LA VA, and the La Jolla VA.  Why so many locations?  Have a brain tumor and subsequent complications as a result and you, yourself will come to understand all the required specialists who need to be on board–and how the VA has said specialists (or specialist-singular) at one location but not another.  So Cole and I get to travel a lot together and spend a significant amount of days at varying facilities.  Our observation?  Cole’s age group is the minority.  Why?  Because most young military personnel who are injured and released from service are medically boarded and have the private insurance company called, TriCare.  As to why Cole does not have that advantage is another story; a story which I am saving should we decide the press needs to up the ante on the military and the decision making board…there is quite a story here, I assure you!  However, and in the meantime, the VA has been most gracious to Cole.  And everyone who we have been in contact with has been exceedingly helpful.  And the cafeteria in Long Beach is brand new, with lots of glass and a cool industrial architectural appeal.  Cole and I make for good companionship, as I don’t like to talk much nor does he.  We sit and observe, help where we can, and butt out as needed.

Previous to Cole’s surgery, as I was transitioning from full-time mom, to part-time mom and full time student, one of the questions I had hot on my heels was, “what do I want to be when I grow up?”  The question found no real answer because I have truly loved my position as home-maker, wife, mother, familial assistant, volunteer, and friend.  So deciding on a career that could fulfill my already fulfilled self was challenging;  yet I was pursuing the degree because my domestic duties weren’t producing an income.  Then as certain as change itself, my path was redirected back to home (and out of school) when Cole was diagnosed with the brain tumor.  And here I am again in the full-time position which has been the most rewarding of places to be.  Of course, while I was fast upon my road to becoming an educated individual, I did my best to maintain the priorities of my family.  Easy to do in my heart, but challenging when it came necessary to study.  At any rate, thanks to the VA, I am now receiving a stipend for helping to take care of my son.  A blessing that is most appreciated now, especially with Brian being out a regular paycheck (Yes, in theory he qualifies for unemployment.  However, that is yet another story–one I hope will soon have a happy ending.  But in the meantime…uuggg!)

Now to give credit to my somewhat misleading title…

It has been my experience, this past year, that some people are truly afraid of what life has handed our family.  In a covertly perverse way, it is as if cancer (or tragedy-not that they are synonymous) is contagious.  I have experienced people ‘keeping their distance’ because they cannot handle the reality of Cole’s circumstance, our circumstance.  I have also had people afraid to ask me how Cole is doing, for fear the answer will be grave; as in Cole is in one–though he wishes for cremation not burial.  Yesterday, one such person coyly broached the subject and then apologetically said, “I hate to even ask.”  But was then encouraged by my answer, “Please ask away.  And we are doing well…in this moment.  We truly live day-to-day, moment-to-moment.  And today all is well.”  His response was positive and his hesitation to smile (in my presence) subsided.
In all honesty, I am not offended one bit by this not-so-uncommon reaction.  I am saddened a little because, while staying away, they are missing out on hearing of the blessings that we live in, which of course I would love to share; and I am missing out on their friendship.    So to you, the reader (because I do not have the forum to shout it out to the whole world), I say, “Don’t let fear get in your way!  Of anything!  Fear is a robber; a thief.  It will steal away blessings and rob away joy.  If you find yourself stopping short, as a result of fear, push through…and push it aside.  And please, do not fear being our friend nor asking how we are.  Though I realize befriending our family comes with a great deal of risk!”

And most importantly, remember–CANCER IS NOT CONTAGIOUS (though some sexually transmitted diseases, which can cause cancer, are!) …oh dear, that is one of the risks–Rivka-isms! 🙂

The LORD is my light and my salvation; whom shall I fear? the LORD is the strength of my life; of whom shall I be afraid? (psalm 27:1)

P.s. I could write an entire study on the Psalms and psalmist…for King David, the author of the Psalms (let’s leave it there for simplicity sake), was one complicated man…yet the Lord saw past his complications, never letting go of David and considered him “a man after G-d’s own heart”.  How is that relevant to me?  Just reminds me that my “Rivka-isms” don’t even scare off G-d, at least not when compared to David! 😉

Tags: , , ,

← Older Entries
Newer Entries →