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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! 😉

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SHIT

1 Feb

I had intended to give a quick update on a few issues, then delve right into my promised post titled, “Betty Cranker the Marriage Killer”, but alas a new day has dawned and due to circumstances I can only say, “shit”.  I will back track a bit, just to bring you up to speed.

This past fall, my mother asked Cole if he would like to accompany her to Nicaragua.  Cole said, “yes”.  Now if you think back to some of my writings this past year, you’ll remember that the word on the street, for Cole, was to “live.”  People ask me all the time, “what is Cole’s prognosis?”  I don’t know what they expect me to say…perhaps they want to hear, “oh, he has 1-5 years”, or perhaps they are wanting me to say, “well, after we kill his body some more with radiation, he will have a better chance at surviving into his late twenties.”  Regardless of what people intend to learn from that particular inquiry, my answer is always the same, “the prognosis is to live!”  So my mom booked him a flight to go with her this winter and Brian and I took them both to LAX last night.  Cole, with his backpack on his lap, wheeled himself behind his grandma who was alongside the porter (are we still allowed to use that word?), and away they went into the international terminal.  With the threat of a big fat ticket from the motor-cop patrolling the drop off area, Brian and I took one last look at our son and then left the airport.

Now with last week’s fiasco, the bleeding out the eyes and the issues from surgery, we didn’t know if Cole was going to be able to make his trip (yesterday he was given the seal of approval from the surgeon himself).  And of course, I had hoped to write about its impending doom, only I had such a terrible migraine for the entire week, that I couldn’t even use the computer one bit.  Throw Cole’s 21st birthday party in on Saturday and my sister being here for the weekend, and voila–you don’t get an updated post until now.  Which brings me to the fecal matter as promised above.

This morning I was able to touch base with the Nicaragua crew, just as they were getting ready to depart from Houston to Managua.  The word was good…Cole feels he is traveling better than he expected.  Hooray!

So with Esther off at school this morning, Brian and I were eye-balling each other like two teenagers who knowingly have a house to themselves for a good chunk of time (if you can’t read between those lines, I’m sorry for you!).  But just as I peeled down to my last garment, the phone rang.  Now under other circumstances I would not have answered the phone, however, with a son en route and a mother with atrial fibrillation alongside him, I answered the phone.  It was my sister.  She was in tears…my grandmother, my precious Grandma Ella-my mom’s mom, had just left our world.  I hung up the phone and shared the news with Brian.  He then pulled me into his arms and we held each other and cried.

And really, all I can come up with is “shit”…it is the same response I had almost a year ago on Saturday, March 12th.  Cole and I were in the ER and he had just insisted to the PA (physician’s assistant) that he wanted a CT scan before being sent home.  The PA was sure Cole was suffering only from vertigo and wasn’t really on board with ordering the scan…but Cole had a feeling.  Twenty minutes later, the “white coat”, Dr. Firestone MD, came walking into our room and shared the news that Cole had a hemorrhaging mass (tumor) on his brain-stem and they had the neurosurgeon on the phone and a bed in surgical ICU being prepared.  I looked at Cole and said, “shit!”

Now I don’t know why everything revolves around poop with me.  But I will tell you, that every time I say it I think of Brian’s Grandma Mae…she told me a story about her father and that word.  She apparently used the word in his presence when she was a teenager.  His response to her was, “I wouldn’t hold in my hand, what you just had in your mouth!”  And he is right.

It is not easy to say goodbye to someone we feel we need to have with us.  That is where I am at with my grandma Ella…in fact, that is where our entire family is at with saying goodbye to our matriarch.  That seems to be where Piper (Cole’s dog) is at with Cole’s absence, for she is here sitting beside me as I write.  “Where is Cole?”, her eyes seem to ask.  So to her I say this, “He is living.  The same as my grandma Ella.  They are both living, though they are not living with us here right now.”

And you know what?  I can hear my grandma say the same, “live”!  …then she would tell me to stop eating shit, and stop doling it out!

Oi Vay, what a day!

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Part III-Cole

14 Dec

Most mornings run the same for me…wake up, make coffee, make breakfast, say goodbye to Esther who now drives herself to school, and then enjoy the relief that comes from what I call ‘my morning constitutional’ (which of course is a natural bodily function and not a walk around the block).  Now in my fantasy world, I like to believe that my morning constitutional is a private affair–meaning that my family members know and respect that the time in the bathroom is sacred and should not be interrupted.  But as most moms know, once you cross the threshold of motherhood, boundaries such as privacy while on the latrine become obsolete.  So yesterday morning, while in my fantastical privacy-land, I heard footsteps approaching my bathroom door.  Next I heard the voice of my adult son and this is what he said, “Mom, as Esther was leaving this morning she said something funny and I smirked.”

“How did Cole progress while in his second week of acupuncture therapy?”, you ask…well, he smirked!  While writing this phenomenal action I feel the same type of bondage I felt yesterday morning when he spoke it through the door; for this type of NEWS should be shouted and celebrated.  We should gather hands and in a circle, do a dance of some sort, while chanting “he smirked, he smirked” over and over again.  And just like yesterday morning, when I was bound to the porcelain by certain sanitary requirements and could not immediately jump up and give my son a hug, I am bound, through this post, to only relay the words as he spoke them without the attachment of his nor my enthusiasm.  Such is the life in prose!

So let me break it down for you in the simplest, yet the most magnificent of terms…Cole’s cranial nerves are discovering new pathways of communication.  And it is through the marvelous therapeutic approach of Dr. Zhu and Dr. Moyee that this is happening!  We are beyond excited because once the nerves discover a new pathway, the communication will just continue to grow and strengthen.  Thus, while here at home, Cole is continuing the intensive eye and face exercises that he learned up north.  And on Thursday (of this week) we will follow up with Dr. Jing Li the acupuncturist here in Irvine who originally referred us to Dr. Zhu.

Other improvements noted in a weeks time:

  • Improved balance, such as, in beginning of week Cole couldn’t ride the stationary bike without holding onto something,  by Friday he needed nothing for support.
  • Better control of left eye lateral movement.
  • Right eye becoming more centered.
  • Double vision decreasing, meaning, the two objects are moving closer together.
  • The distance from his face that a given object remains one, is further out than in beginning of week.
  • Eye lid closure nearly 100%.
  • Increased moisture in the eyes, which means decreased usage of eye drops (which used to be employed every half hour to an hour).
  • Nausea completely diminished.
  • Stomach acid over production decreasing.
  • Improved stamina and endurance.

And with yesterday’s news I can add to the list that Cole is feeling muscle twitching and movement in his face.  The smile he so longs to have is not far from reach…EXCITING STUFF!!!  In addition to this treasure trove of good news, today we received the hard-copy book of the ‘CarePages’ material (I had ordered it a couple of weeks ago).  All Brian and I could do was sigh when looking at the first page.  It has been quite a year and Cole has come so very far!

Next up, Cole has his follow up MRI’s this coming Saturday morning.  And just to irritate me, I am feeling quite emotional.  What you don’t know is that my emotional sensitivity was tripped off last week when Cole and I decided to watch, what we thought would be a hilarious movie, called 50/50.  We knew going into it that it was centered around a young man who discovers he has a malignant tumor in his spine.  And though the movie promoted itself to lean more toward the humor involved in the cancer scenario, there is just no getting around the gravity of the life changing situation.  Turns out it was a little too soon for the both of us to take in.  Now the carepages book has arrived, and well, I’m all messed up!  Aaaahhhh, but this is Part III-Cole, so never you mind about me.  Cole is doing just fine.  PRAISE THE LORD!!! (and pass the ammunition–just kidding) 😉

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