Tag Archives: tumor

Nothin’

26 Jul

A couple of months ago my husband Brian and I were with my aunt for the unveiling of my uncle’s tombstone.  It had been over one year since his passing and though traditionally the unveiling is done at the one year marker, for reasons that avail themselves to be a part of life, the unveiling happened at about 15 months.  At any rate, while we were driving in the car my aunt confided in us that the second year of living without her husband seemed to be harder than the first.  I remember really taking in what she said at the time and mulling over its meaning.  And quite frankly I haven’t stopped my mulling.

Our family (and more specifically my son), is at the 16 month marker from the date of learning of the dreaded brain tumor.  We are in the second year, and I concur with my aunt, it is harder.  I have a motto: “You mess with the brain, you mess with the entire body!”  And since Cole’s surgery, besides the obvious physical disabilities he is left to contend with, he has been left with an internal system that remains, at best, mysterious.  Quite frankly, his gastrointestinal system is a problem.  In fact, his last two trips to the hospital ER have been due to extreme pain in the region of the small intestine.  So much so, that only a narcotic pain relief system has saved him from the agony.  And because that is not the course of treatment we look to, on the long term, the diagnostic testing was moved up and completed this past Tuesday.

Now being that Cole has Crohn’s Disease on both his maternal and paternal sides of the family, as well as colon cancer heavily on my side along with ulcerative colitis, you can imagine how happy we were to learn that none of these issues befalls him.  Yes, we can let out a big sigh of relief…for he doesn’t have to contend with having had a malignant brain tumor and then contend with having any form of additional disease on top of the whopper he already endures.  A big “Praise the Lord” for that!

But what he does have heavy upon his mind and soul is the big nothing that showed up in every test and culture taken.  “Nothing, everything looks normal.”  Yet he has agonizing pain.  This is the “hard” I mentioned earlier.  The moving through the nothings of life and trying to keep the chin up.  The first year post tumor resection was spent in concentrated rehabilitation.  Our family was on high alert living off of the adrenaline rush of the circumstance.  Now we are not.  It’s as if we have turned another corner…  We have moved out of the big city of dodging cars and people, with blinking lights–green now yellow then red–which seemed to guide our every step.  And we are now heading along a path that is more subdued, plain, and perhaps a bit monotonous.  With a tumbleweed or two, from time to time, rolling across our path.  Not enough to invoke our internal emergency system (the chemicals which strengthen us in times of emergency), just enough to wear us out from dodging them.  And when we think there might be a tornado on the horizon, which could possibly kick up the ‘ol juices again, it turns out to be nothing more than the lackluster performance of a dust-devil.

So here we are, walking a long road of nothing.  Cole has pain and now has to somehow process that this is normal.

Being the last of the diagnostics were Tuesday, and yesterday he was down as a result; And today he was still suffering the tail end of the tests intrusions, I have to somehow remain hopeful that tomorrow we will figure out how to traverse this “second year” path no matter how droll the scenery may be.

Does that make sense to you, my reader?  Can you feel the anguish through my metaphorical ramblings?  Because I assure you, I am not lamenting the adventure of our previous year.  I am merely sharing my current observations.  And what they boil down to, in plain spoken text, is that it is harder to have to tell my son that his disabilities and internal sensitivities just might be here the rest of his life when in the first year we were pushing as hard as we could to help him gain back every ounce of ability lost.

That, dear friends, is my tumbleweed.

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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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Have Flu, Will Travel

1 Nov

Well it didn’t happen as my title suggests.  I traveled, then returned home and awoke the next day with the flu.  That was yesterday.

Once a year my girlfriend and I take a weekend respite on the island of Santa Catalina.  Our weekend is typically planned one year in advance of our departure, so when the time comes rolling into view, our internal engines get revving for take off.  Or in this case, being it’s an island we are traveling to, our engines get ready to set sail.  Of course there have been a few years when circumstances on the home-front threaten to call off the voyage.  Such as when Brian’s mom was in the hospital in 2007, and such as this year when our family is still undergoing the recuperation of Cole Bent.  But alas, I needed this break so very much that I practically ran to the boat, luggage in hand, with the threatening promise to keep my phone off for the next three days (as well as the derogatory commentary which accidentally slipped through my lips that went something like this; “They’ll be lucky if I ever return!”).  And come Sunday, the last day of our Isla del Sol, I was seriously, though not wholeheartedly, considering taking myself up on the threat in parentheses.  Which is probably why I was punished the following morning with “Moctezuma’s Revenge” and had to spend most of the day connected to the latrine and when not in the bathroom, in the prone position.  Cole took over the candy duty for our neighborhood trick-or-treators last night as Brian had a gig, and Esther had other plans.  I remained on the couch, where I’m sure all the parents’ of excited children, were grateful to have me.

Today am feeling better, though a bit sluggish.

A strange occurrence happened to me while on the island this past weekend…I was plagued by hay-fever type allergies.  So much so that I actually bought allergy medicine for an exorbitant fee from the local store.  But the medicine did help stop the incessant sneezing.  It was strange for me to be in the shoes of an allergy sufferer because I have not been one in the past.  That was always my brother, Greg’s, familial position.  I was always the vocal bystander, the one who would point out to my brother how irritating his continuous sneezing was for all of us in his presence.  Anyway, I’m thinking my body chemistry is changing–which is something that has been “winking” at me for some time now.  An irritating reality!

Now the past two weeks or so, Cole has been asking me to find him an acupuncture doctor because he is interested in looking into the effects of acupuncture for his cranial nerve damage, more specifically, his face.  So while on Catalina, and because of my own personal health revelation, I mentioned the scenario to my friend.  She spoke of a doctor who came highly recommended in the arena of natural medicine, though she didn’t know much detail about her practice.  So today I followed up with the lead and learned this doctor is an MD who embraced holistic medicine because its benefits, she found, are more helpful to the patient on the long term.  Yet she still supports the influence of Western Medicine for acute scenarios, such as that of a brain tumor.  Anyway, her name is Dr. Connealy and her practice is in Irvine.  Turns out she has a broad range medical facility, with many medical partners and disciplines, including but not limited to, acupuncture.  I called and learned they do take many insurance plans, but not that of ours.  Dr. Connealy is not an Anthem Blue Cross provider which means we would have to cover the fee at time of consultation and then submit it to our insurance for “hopeful” reimbursement.  The fee?  A mere $425.00 per person.  Yes, I had hoped to go as well for my new found allergy issues as well as imbalanced hormone issues, but at $425- a pop, it’s not going to happen!

Here is where you come in…

Do any of you have a lead for Cole’s request specifically and firstly, as well as mine secondly.  I am hoping to find a naturalist doctor who is also an MD, who is in the Anthem Blue Cross network of providers.  I hope and pray you or someone you know will point us in the right direction; a direction we can afford preferably.  I look forward to your feedback.

Now back to my happy place I go, “Twenty six miles across the sea, Santa Catalina is a waiting for me…”

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