Please, do not Judge

November 17, 2016  •  1 Comment

Yes, without a doubt this has been one of the roughest years in my life, but please, do not judge.

Yes, the doctor 3 years ago (almost exactly) failed to tell me that I had a second rare tumor which meant that it had the chance to grow for two additional years before being found if almost by accident this past January. This resulted in a surgery in March which kept me out of work for 3 months. Some people criticized me for saying 'too much' while others were the support I needed to get through another 1/100,000,000 unbelievable event. Please do not judge the doctor because I have forgiven her for her oversight (or whatever it was) I refuse to carry the burden of hate and anger. Will I ever go back to see her, not a chance, but neither will I defame her name. Please, do not judge.

The school shooting that occurred almost 3 years ago (the same week as the doctor visit) still haunts my dreams and causes me to jump at loud noises; sometimes I still cry when I hear a particular song. I cannot even begin to understand why Carl did what he did and forgiveness is a BIG word, but I refuse to carry the burden of the anger and hate with me. Please, do not judge.

We loved our Roarke and had him for such a short time but he was just what Mark & I needed and we wept big ugly tears of love and admiration for a "mean & aggressive" Rottie who really was just a shining example of what I wish some humans would strive for. The incident with Sarge is heartbreaking...gut wrenching. One minute he was on his back letting me scratch his belly then sitting up and eating treats out of my hand and in a blink of an eye he was attacking me for reasons I do not know. Please, do not judge. Don't judge the dog, his previous owners, or us. I am having a hard time understanding why on an interstate as busy as I-70 no one, NOT ONE PERSON stopped to help us when we were clearly in extreme distress, but that seems to be where our nation is right now. Shame on those people who turned a blind eye when they drove by. Clearly I haven't forgiven them but I am sure I will...I have forgiven far worse in my lifetime. Please, do not judge.

You see the world is full of things that we can't explain and will never understand...please, do not judge, rather reach out and help someone who needs it, regardless of who they voted for in the most recent election.

Exercise forgiveness. Exercise understanding. Exercise empathy.  Listen and exercise grace while they are trying to heal.

Don't offer pity platitudes in place of a simple, "I am so sorry..." or "I won't pretend to understand..."  Please don't insert yourself into someone else's grief or trauma. If you weren't 'there' or have not experienced the same situation don't pretend like you did and by all means please refrain from claims that you were somewhere and in some situation that you were not. If you have not walked in someone else's shoes then don't pretend that you have because by doing that you diminish their experience and shift a rather selfish focus to yourself rather than an empathetic attitude toward them and what they may be going through. 

Please, do not judge what someone else is going through because the lens in which you view life may not be the same as someone else.

"Live a life of integrity and practice grace daily."

RoarkeThis is our beloved Roarke just 2 short months after we adopted him.


Vagal Schwannoma 2.5-Not really

March 17, 2016  •  Leave a Comment

Here is what will probably be my last blog about this nasty little bugger of a tumor.  Surgery was on March 7th and apparently my sense of humor remained intact despite my high level of anxiety as well as anesthesia... you see just prior to being rolled in for surgery I asked the doctor what music he was going to listen to and when he said "... probably 90's Rock and definitely not Country or Jazz " I crinkled my nose. He asked what I would prefer and my answer was, "Mumford & Sons" although I never did ask his what he actually did listen to.  Upon waking up I was apparently quite concerned with my ability to move my face and  more specifically my tongue because that would be an indication of which nerve he had to cut which would be an indication of whether or not I would be able to continue to interpret; again with sense of humor intact I proceeded to stick my tongue out at my husband and then we had discussion as to who in the family could roll their tongue.  Since I was coming out of anesthesia this conversation was repeated a few times because of course I could not remember the answer!

So to get to the nitty gritty of it all here is the long and the short of it: the tumor was in fact NOT a recurrence of the previous Vagal Schwannoma in fact it wasn't even a Schwannoma (although in the same family of tumors), it was a Paraganglioma on the superior cervical sympathetic trunk.  It was not 2.5cm it was 3cm; I know that doesn't sound like much of a difference but for these type of tumors and in the location of the neck where it was .5cm is a big difference. The result of severing the nerve is a temporary (although it is yet to be seen as to how temporary) paralysis/weakness of the left side of my face, as well as some other minor but permanent damage that should have little if any negative impact on my life.

Because I turned the last tumor into something constructive and overwhelmingly positive, many people have already asked what I am going to do to turn this tumor into something positive. The answer is ...I don't know. Yet.  I need to get back on my feet, back to work, and back behind my camera, or in other words...back to 'normal' before I can even begin to formulate my next move.

I have been writing a book about some of my life experiences and now I need to go back and revise the chapter where I discuss the last tumor to include this newest one and my guess is that in a week or two I should be clearheaded enough to get back to that book and make the revisions/additions.  Truth be told I am pretty excited about the book, the feedback I have gotten so far is that it is "funny" and that those that have read it want to "continue reading to find out what happens." Sure I can see plenty of revisions in my future but since it is a memoir-ish book there are only so many revisions that I can make.

In the meantime, thanks to my sister I have all of the Downton Abby seasons on DVD and will be watching those as I make faces to try to regain the movement in my face.  Oh, and to answer the question of who in my family can roll their tongue...well I can, and so can my son, but my daughter and my husband cannot although both of my in-laws can which is odd since that is a genetic trait which then would indicate that both of my in-laws are non-dominate and did not pass on the dominate trait of tongue rolling to my husband.  BOOM...biology lesson for the day!  You are welcome.


Vagal Schwannoma 2.5-Marking Time

February 29, 2016  •  2 Comments


Time is cultural.

Did you know that?  

Yes, it is true, how we measure time is cultural.  Just think about it....BC, AD, BCE, the names of the days and the months, the length of a day, even today is "Leap" day because we add an extra day to the Gregorian calendar to sync it to the solar calendar. 

I can remember as a kid the wait for Christmas or my birthday seemed to take FOREVER until POOF! The day arrived and was gone in what seemed like an instant.  The same seemed true for prom and my wedding day, even when I found out that I was pregnant.  Nine months (well really 10) seemed like an eternity until labor started then all I could think was how unprepared I was and that I really needed just a few more days.

The same seems to be true now as I wait for surgery, it was 3 weeks, then 2 weeks, now it's under a week.  Mere days.  Then it will be hours.  Then that moment...that horribly raw moment when I will have to say 'goodbye' to my family and be wheeled off to the cold, white, sterile, operating room.

I hate that moment.

Anyone who has had surgery knows what I am speaking of.  

It is as if time has stopped...everyone is moving at hyper speed, everyone except for YOU the person on the gurney.

The tension, at least for me, feels as if I am about to spontaneously combust.  I hate it!  

Then when I feel like I just want to jump off the table or cry...relief.  I don't know what they give you prior to actually knocking you out but I don't really care...it's better than feeling like my head is about to explode and is just mere moments away.

The next thing that happens is waking up in recovery, or as it happened the last time I had this pesky little tumor, Dr Personality woke me up by thumping me on the forehead.  I am still not sure why he felt that it was appropriate to do that, after all he was the one responsible for the 15 inch incision and the 52 staples (not to mention 1000's of stitches) needed to close it all up.  

Anyway...on this  Leap Day 2016, exactly 16 years after the first one, I am now down to counting the days.  I think my brain has gone into some sort of a protective mode, either that or I am in such deep denial that the countdown has begun, because I am feeling an unusual calm about it all.  "It is what it is" (I hate that phrase because it is so cliche...pithy, trite, and overused) and it will be what it will be...and God is in control after all. So I wait.

So wait I will...the day will be here no matter how I measure time.  Best case outcome or worst case scenario...I will not know the results until after the surgery.  Until then I measure time the only way I know how and enjoy banana splits for dinner (because I am going to eat what I want while I can)!

 

 


Vagal Schwannoma 2.5-Surgeon Visit

February 12, 2016  •  4 Comments
Yesterday was the much awaited visit to the Head & Neck Surgeon (Previously referred to as Dr Special McSpecialist)
 
What we know is:
  •  the MRI showed that the tumor is not a tiny bean shaped tumor, rather it is a large mass located under my left jaw (not on my neck as originally thought)
  • there does not appear to be any aneurysms this time (yeah!)
  • it IS operable (yeah X10!!)
  • the doc SHOULD be able to avoid the aneurysm coils from the previous surgery (which was a big concern of mine)
  • The surgery should be about 4 hours (much shorter than before-yeah!) and barring any complications I should only be in the hospital for a few days then a 2 week recovery at home.
  • Mark will be taking a 2-week leave of absence and my mom & step-dad will be coming out as well as my sister and my kids
  • The scar should not be 15 inches again (yeah!), in fact they should be able to use the same incision site as before so no new scars on my neck!  Due to all of the paralysis and nerve damage from before he will NOT be able to 'tighten up' my neck...trust me I asked, I figured that I might as well try to get something out of this.  :) 
What we don't know and won't know until surgery is:
  • if it is cancer or not...it currently appears to NOT be cancer.  The Doc will send a small piece of tissue to pathology during surgery so that he can make the necessary decisions while I am in the OR 
  • what nerve it is on.  If it is on the one that has already been cut then there should be no new damage.  If it is on a different nerve(s) then damage is yet to be seen
  • we do not know why it would have re-grown on the vagus nerve because it had been cut with about 2 inches removed which is why they think it may be on a different nerve now.It does not appear to be NF2 (neurofibramatosis type 2) but the assumption now is that it is probably genetic (we kinda knew that because we believe my dad died at the age of 59, of the same thing)
  • whether or not it is on or involved with the Carotid...if it is then I will probably need blood transfusions.  IF you are so inclined then I would appreciate you and your friends/family etc donating blood at St Joseph's in my name.  The last time I went through this (March 2000) I did not need any transfusions so all of the blood donated in my name was then used by MUSC (Medical University of South Carolina)  for those people who did need it so it is all good!
Currently I am waiting for a call from the surgery scheduler at St Joseph's to find out the day and time, they want to get me in within a month (or sooner) and I am on the rush list.
 
Please do me the favor of not discussing this beyond the information I have just provided.  This is a very rare tumor to begin with and having a recurrence is even more rare...although technology has improved greatly my alternatives are the same as they were 16 years ago.  If you want to know more about what this is you can "use the Google" and search for Vagal Schwannoma...most of what's out there in cyberland is either dry medical PDF's or a website  www.vagalschwannoma.com which is not a medical based site but does have some good links. Any type of radiation including Cyberknife and gammaknife are not options for me and there is no chemotherapy available for this...as I said this is rare. 
 
Again, please refrain from discussing anything outside of the information I have provided; this is not my first encounter with this rare bugger and what I really need is encouragement and support, not gossip and judgement. Please honor the fact that this is a tough pill to swallow especially on the heels of the Arapahoe shooting  and my family is struggling with this right along with me. 
 
Oh..and for those that choose to be less than positive or encouraging or in any way curmudgeony well I have but one thing to say... to paraphrase an old curse (or one that I recall form an old movie): "May the fleas of a thousand camels infest your armpits!"  Ok... maybe that was a bit harsh or too snarky...please allow me my moments!
 
 

Vagal Schwannoma 2.5-Being "Strong"

February 06, 2016  •  1 Comment

You may be wondering why this series of blogs is entitled "Vagal Schwannoma 2.5"...well because this is my second go-round with this rare and elusive little bugger and because this one currently measures approximately 2.5 cm.  In the last week I have actually been able to schedule an appointment with the 'special specialist' and then pushed and pushed to get the required MRI scheduled...this alone was a frustrating task because radiology flat out refused to schedule  one due to the titanium aneurysm clips I have in my neck left over from the last time my little 'shwammy' friend made my neck his home.  Helllooo...they are TITANIUM and oh-by-the-way I  have had close to 10 MRI's  (yes that is correct-and truth be told probably as many CT's)  of my head and neck since the last tumor with no problems stemming from those life saving little clips.  

So once the appointment with Dr Special McSpecialist was confirmed my  phone seemed some days to ring nonstop like an old time telephone with no answering machine...and because, thank goodness, there is now such a thing as voice mail they did indeed leave messages and I was able to return the calls.  There is also a nifty thing called e-mail and I used this feature in my health insurance website to contact Dr Special McSpecialist to let him know about the issues with radiology and viola! Problem solved... he used that same little feature as well as that handy thing call a cell phone to pull some well placed strings and yes you guessed it, my MRI is Monday after I get off work (it really doesn't get any better than that when dealing with insurance).

Movin' on...now to get my health records sent from South Carolina to Colorado.  Let's just say that despite doing everything according to procedure a certain hospital not only refused to send the records but someone actually hung up on Dr Special McSpecialist's nurse when she called a second time.  When she called me to tell me that I started thinking...which isn't always a good thing but in this case it was pure genius.  Let me back up a wee little bit to  last summer:

My husband had received, of all things, a Facebook message from a friend of ours from South Carolina, his eldest son and our son were good friends while we lived there and as a result we all became friends.  In the message he said that his son was driving to Sitka, Alaska to his first job since graduating from college and as it so happened he was stranded in Denver with car problems.  Well Mark and I just looked at each other and said 'let's go' and off we went to go meet him at the car repair shop, we picked him up  and showed him around while waiting for a diagnosis, which as it turned out would not be  until the following morning.  So doing what we do, we brought him home to our little condo, fed him dinner, and gave him our office complete with a nice cozy air mattress to sleep on.  The following day when he was informed that they would need to work on his pickup for a few days we, without hesitation, handed him the keys to our Tundra so he could go do whatever he wanted to do.  On his last day with us he and our son got together and spent the day gallivanting in our sons Jeep and we all met later for dinner.  Our friends in South Carolina were beside themselves with worry about their son being so far from home and at the same time so grateful for our help, in our eyes that's just what friends do and we were glad to be in a position to have him with us and help him however we could. Many times they said how indebted they were to us but we did not feel that they owed us a thing....it's what friends do, at least in our book.

So back to the medical records thing... when I found out that the nurse "Lily" (not her real name) had been  hung up on and treated so badly while trying to get my records I was more than a little mad and took a long-shot of a chance and texted my friend in SC because she had worked as an advance practice nurse at that same hospital for many years and asked her if by chance she might know anyone in the medical records department. And ya know what happened...? God winked!  Not only did she know 'someone' in medical records she actually was friends with the supervisor and they had gone to church together for years.  She put us in touch with each other, now I have no idea what happened on that end as far as the supervisor and the person who hung up on 'Lily' but I do know that the very next day my files had been sent and confirmed received!   I thanked my friend profusely and she said that was the least she could do for all that we did for her son.  Again...that is what friends do; we were in a position to help her son and did, and she was in a position to help me and she did.  I am not keeping score...just grateful for friendships!

This coming week, with the MRI and the appointment with Dr Special McSpecialist , has me already on edge.  Oh how I wish I could be like those people you see on TV that when faced with a dire diagnosis or situation just smile and say that they are happy to be alive, after all why worry.  Yeppers...I AM happy to be alive and have not wasted a single minute of the last 16 years since the first tumor, but I would be lying if I said that I haven't cried.  In actuality I have cried.. a lot!  I have been angry too.  I mean really... since February 2000 I have stared down a rare tumor that took a major and a few 'minor' cranial nerves, survived surgeries that I was told that I would not; lost and regained my voice 3 times over two years then finally success!  That final vocal surgery was supposed to last about 6 years and it has now been 14 years! I took all that bad stuff and turned into something good and productive by becoming an interpreter, but then there was that horrible day of the school shooting, and now that I read some of the reports and depositions I feel angry and betrayed by the very school district I worked for.  

Yep...I am a strong broad to be sure...but that doesn't mean that I am made of steel and stone with ice as a mortar.  I am but a human and strength comes in many shapes and forms. I have persevered to be sure that the appropriate appointments were scheduled and that my current doctor has all of my records so that he can see the whole picture in order to make the best game plan possible.  Strength does not mean that you are  unfeeling...it means that you remain undeterred despite wanting to crawl under a quilt and cry.

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