Sunday, April 24, 2016

I think I'm Slowly Going Mad By C.P. Stringham

The spot that started it all. 
I’m not myself. I haven’t been since March 2015. That was when an imaging scan revealed a lesion on my then fifteen year-old daughter’s brain. The scan was ordered to see why she was having increased headaches and vision abnormalities associated with migraines. (During this past week’s appointment at Golisano Children’s Hospital, I learned from the pediatric neuro-oncologist that such findings are called an “incidental diagnosis.”) For over a year, I have been walking a mental tightrope constructed of fear, sadness, and anxiety. Although her pediatric neurologist, whom she’s been under the care of for her epilepsy these past nine years, felt the lesion was going to turn out to be “something boring,” he still referred her to a pediatric neurosurgeon at a state and nationally ranked hospital for his official opinion. We left that appointment with the same prognosis as her pediatric neurologist had given us; addressing the brain anomaly as a lesion or scar tissue that she could have had since development and that it appeared to pose no threat. Due to her autism and the cognitive damage her grand mal seizure caused in 2014, the location of the lesion, near her thalamus, hypothalamus, and brain stem, was deemed too dangerous on both a cognitive and physiological level to risk a biopsy.
L to R: The morning after her grand mal seizure with broken capillaries evident on her face, neck, and chest
from increased blood pressure, straining, and lack of oxygen; four days later and her skin tone almost back to

      Six months later, we returned to the larger hospital for a comparison contrast MRI. Due to the mild reaction she had to contrast dye at our local facility, the MRI had to be performed at Golisano because they are better equipped for an adverse reaction. The contrast dye plays such a pivotal role in imaging lesions, her doctors agreed it was worth the risk to get the better images. She was prescribed Prednisone, an antihistamine, and Ativan ahead of the scan. We left the hospital for her across town follow-up appointment with the pediatric neurosurgeon. During the appointment, his vocabulary evolved since our initial appointment from lesion and scar tissue to glioma and tumor. My husband and I felt like we suffered a direct blow to our hearts. A medical sucker punch. We had been naïve. Maybe looking through rose-colored glasses during the first round of appointments. At any rate, I chastised myself for not jumping on the computer and researching as much as I could about brain lesions. If I had, I would have asked a lot more questions during the first visit. I realize doctors don’t want to make a patient and their family panic, especially when they feel the prognosis is positive, but I went into it blind and uninformed. I know how much doctors hate when patients or their family members use computers for self-diagnosis, however, being prepared isn’t a bad thing.
Posing for photos last summer. I love that face! 
With the change in vocabulary, I researched the terms and recommendations. My husband, while he was just as worried, wasn’t freaking out like I was. He remained patient as I had my mom meltdowns fueled by “what ifs?” I consulted with a friend who is an ER physician’s assistant. In her department, she gets exposed to a little of everything. I asked her if getting a second opinion was too extreme. She actually encouraged it even if it was just for peace of mind. I arranged for a second opinion at Children’s Hospital of Philadelphia. Their pediatric neurology and oncology departments are ranked third in the nation. My daughter’s godmother’s mom let us spend the night at her house to make the five hour trip to Philly a little easier on all of us. Staying with her put us less than forty miles from the hospital. Their pediatric neuro-oncologist agreed with our daughter’s doctors not only on the status of the tumor, but reaffirmed that a biopsy would be detrimental to her. Mackenzie isn’t the same child since her grand mal and we can’t risk losing more of her.
In March, Mackenzie traveled to Rochester and had another six month comparison MRI. The neuro-radiologist and her pediatric neurosurgeon concurred that her tumor appears to be stable and unchanged. Upon getting her latest results, her pediatric neurosurgeon turned Mackenzie’s future follow-ups and comparison imaging over to a pediatric neuro-oncologist. Before meeting the new doctor, she had her routine six month epilepsy check-up with her pediatric neurologist. During the visit, we discussed her increased incidence of migraines with “Alice in Wonderland” syndrome tendencies, her weight gain caused by her anti-seizure medication (forty-eight pounds in two and a half years), and her memory issues (ßthank you, Grand Mal Seizure). On the way home, I read over her computer printout from her visit notes. Under "Problem List" it read: "Migraine with typical aura, Malignant neoplasm of the brain, Generalized convulsive epilepsy, Congenital anomaly of brain, Amnesia. “Malignant neoplasm of the brain?!” I was crushed. With everything we’d been told, no one had used the M-word. Not once. We were told, “low grade glioma of the thalamus, without midline crossing of the brain; clear edges with no vascular involvement; size unchanged and stable.” I called the doctor’s office en route to our home and asked the receptionist if a DX code had been entered incorrectly since there had been no mention of a malignancy. She assured me she would speak with the doctor since it needed to be fixed for insurance purposes. My husband waited until the next day to call and make sure it had been fixed. With everything going on, having an issue come up with our insurance would be horrible. That was when she told him the doctor wanted to talk with us. He called an hour later. It boils down to there being too much “uncertainty" with her lesion and DX code limitations. Since Kenzie is being referred to the pediatric neuro-oncologist for further follow-ups and monitoring, her pediatric neurologist wanted to make sure her paperwork was in order. The hospital’s computer doesn't allow for a "middle of the road" diagnosis. A glioma is either benign or malignant. There is no in between. While images showed no signs of growth changes or indicated vascular involvement, the only 100% way to know would be to biopsy and, as already stated, it isn’t an option.
This past week, we met with her pediatric neuro-oncologist. He was a very nice man. Kenzie explained that she was missing school because her teachers ended their strike the day before and he went on to tell her how, when he was a student, he and his classmates went on strike to protest the quality of the food served in their cafeteria. He winked at her and told her that he was a student during the 60’s and protests like that happened all the time. At any rate, he made us feel comfortable and encouraged a lot of questions—from all of us. My college freshman daughter joined us for the appointment. We’re a tight-knit family. What affects one of us, affects all of us. While we chatted with the doctor, my thoughts focused on his occupation. I couldn’t imagine having his job. While I know there have been many breakthrough treatments, I still can’t imagine telling a family their child has terminal cancer. Right now, Mackenzie isn’t part of that group. He seemed very optimistic about her prognosis, but did acknowledge the difficulty “uncertainty” caused for all concerned.
Do they come in a chocolate truffle flavor?
This past year, even with some truly great events occurring, has been shadowed by Mackenzie’s diagnosis. I try not to dwell. God bless the creator of Xanax! Without it, I’d never be able to focus coherently again, especially when my mind goes around in what if circles. Uncertainty sucks. It rules your life. Several times Mackenzie has asked me, “Why do all the bad things happen to me?” The kid has autism, epilepsy, migraines, and cognitive issues. And now she has a brain tumor. Seems like a fair question for her to ask. Only I don’t know how to answer her. Honestly, I barely have time to turn away from her before she has a chance to see the tears welling in my eyes or the worry lines appear on my face. I’ve become a hermit. I've isolated myself from others more than ever before—I’m already an introvert. My poor husband takes the brunt of my turbulent emotions. I usually snap at him and my patience level is pretty much non-existent. I have great friends who keep telling me to remain optimistic and to focus on the positive. I wish I knew how. I wish I knew how to turn some worry switch off inside my brain to make such a feat possible. I lack this ability. Meanwhile, we go forward and wait for the next six month comparison MRI.

As for productive writing, it doesn’t come to me. I wanted to have my next book published in May. The book is only at the halfway point. I simply can’t focus on writing. I hope my readers will continue to be supportive and don’t forget about me.   

Monday, April 18, 2016

"It's Just Like Riding a Bike" - by Robin Janney

They say that once you learn how to ride a bicycle, you never forget how to.

They are not kidding!

The bike.
My husband loves me just as I am, my fat doesn't phase him one bit.  But he would like to see me weight less, to be healthier.  Himself as well since he's gained weight since we've been together, even though his fat doesn't phase me one bit either.  So he's always trying to come up with ways for us to exercise together.

For some reason, he doesn't like just going for a walk. Even though walking has always worked for me in the past.   I walked away weight to fit into a prom dress.  In my twenties I walked off almost 40+ pounds - that I ended up putting back on because I stopped walking.  Part of the problem is that I don't walk fast enough for him to break a sweat.  I've told him to walk on ahead at his own pace, but nooooooo, he wants to stay with me. So, he's been coming up with different activities - - that often end up pushing me outside my comfort zone and stressing me out.

Last summer, it was swimming.  I never learned how to swim as a child.  And because one of the first times I stepped into a pool as a teen was an unpleasant experience, I was terrified of the water.  Didn't like it over my head, didn't like it in my ears (still don't), and was just afraid of drowning. But Mr. Janney knew how to swim and did his best to teach me.  It was stressful for me, for all the reasons I already listed and because sometimes I felt like he was trying to rush me. Still, I kept at it.  Even one of the lifeguards at the pool commented on how well I was progressing.  I'm far from being an experienced swimmer, but I'm no longer afraid of drowning - or having my car end up in a lake and not knowing how to swim to the top (thank you Mythbusters!).

Of course, after the warm weather was over and I couldn't swim, I put some weight back on. I've been holding steady where I'm at though since Christmas, so there's that much at least.

So this year's project, even though I want to get back to swimming, is apparently bike riding.

Until Sunday, the last time I was on a bicycle...was over twenty years ago. Over twenty-five even.  I seriously don't even remember the last time. I remember the bike ramp incident when I was somewhere between seven and ten - the most common age mentioned as I try to figure out how old I was is eight.  My twin cousins built a bike ramp in our driveway one summer when they were visiting; they are only a few years older than I am. I think my brother Cliff and I were the only two to go over it.  I landed my jump, but I came down hard and swore up and down I'd hurt my genitals.  So I ran inside to make sure I wasn't bleeding. My brother apparently did not land his very well, because as I was coming out of the bathroom, Cliff was running inside with blood hanging out of his nose.  By the time our mother got out to investigate, the ramp was long gone!

Needless to say, I've been a little intimidated at the very thought of getting back on a bike.  But, I don't want to disappoint my husband. In the weeks leading up to this, whenever I've expressed my fears, he's told me "I have faith in you."  I mean, what is there to say to that?  He said the same thing when I was trying to learn how to swim, and I was able to do that.

The training grounds...
So while Mr. Janney and his father were working on a flag pole to put up in the yard, I was down below in the lower part of my in-laws driveway facing my fears. I was so anxious about this, I'd actually had a dream a few nights before where I just hopped on the bike and took off.  Which is honestly pretty much how it happened in real life - - I hopped on the bike pictured further above and took off.  I didn't ride far, just out into the road and down to the other driveway which you can't see in the photo.  I hopped off to turn around, hopped back on...and almost didn't make the turn and almost rode right into the woods on the other side of the road.  But I managed to get straightened out and back into the driveway.  And apparently was going too fast when I tried stopping and hopping off again, because I went face first into the driveway...I jokingly say that I kissed Mother Earth! Thankfully the only thing scraped up is the knee I landed on, and my hands a little bit.

I didn't let that stop me though.  After I finished telling my hubby that I was alright (he didn't see the fall, just me sitting in the dirt) I hopped back up and tried it again.  Much better the second time. The third time I made it down to the nearest neighbors, still not far away, and back again.  I can't even begin to describe to you the different feelings I had going through me as I soared.  Joy and fear held hands.  It was exhilarating, it was fun, it scared the crap out of me.

So I took a break to help with the flag pole.  Meaning I tried to take pictures for the most part.  But they all flubbed because my fat fingers got in the way.  The picture to the left is seriously the best picture I got.  I know Mr Janney will be happy that I didn't get his face in there.  The picture below is after they got the bell hung and the flag hoisted.

And let me tell you, when they were hanging the bell, all I could think was 'well, that doesn't look safe.' They put the bell in the bucket of the tractor you see, as well as my husband!  Then my father-in-law raised the bucket, bell and husband.  I did help during this part - I got to hold the rope attached to the bell so that it wouldn't get in Mr. Janney's way when he stood and lifted the bell into place.

I'm pretty sure we all took turns ringing the bell once it was all said and done.  I like the picture to the right; that little dot by the bell is the moon.  I wish it showed better, but my fingers weren't in the picture so that's a plus!

After this, Mr. Janney got his bike out and we both went for a little ride.  I tried making it as far as the neighbor who has the pond we like to go swimming in, but my legs would not push me up the little hill. So I told hubby I had to stop and get off...and almost face-planted myself again.  I managed to get myself flipped in time, thankfully there was no traffic as I was laying in the middle of the road. What's even worse, my hubby got off and tried helping me up - only my legs locked and I couldn't stand.  I was so embarrassed even though it was just him there.  He gave me another minute to stretch my legs out, still in the middle of this not-country-enough road, and this time he was able to get me to my feet.  My legs were so shaky from the exertion that I walked my bike back part of the way.  But once again, I didn't let the falling stop me - I got back on and rode the rest of the way back.

I thought I was done for the day after that, but my Mr. Janney decided to make a few alterations to the bike to see if it would be easier for me.  So of course I was obligated to give it another shot after he was done making his changes.  And I don't know what all he did, but it was more comfortable after that.

It was a fun day, and even though bike riding still scares me, I know that the fear will not stop me.

Although I really do think I'll be buying some knee pads and a helmet in the near future!

Safety first!

So dear readers: What fears have you faced recently?

Friday, April 8, 2016

Random Thoughts About Mother Earth by Robin Janney

I think strange thoughts, at strange times all the time.

My husband caught me at it one Tuesday afternoon during our drive into work and picked on me for the rest of the drive.  You'd think he'd be used to it by now!

I was deep in thought, and he said something all of a sudden as we turned by Wendy's.  Whatever it was, caught my attention and I looked over at him and said, "What?"

Realizing I had zoned out, he tried brushing it off with, "Nothing."  I did not let it go, I repeated what I thought he said, and he confirmed my hearing.  Which didn't clear up my confusion any because it made no sense to me (I'm not ever sure now what it was!)

He made a sound of disbelief.  "It was just on the radio.  Didn't you hear it?"

No, no I did not.  And that's when I made the mistake of telling him what I was thinking about so deeply that I missed the nonsense on the radio.

"I was thinking about how it's probably a good thing there's no Mother Earth Goddess, because of how we rape our planet. We drill into her, and raze her forests. And then I thought, what if there is and we just can't hear her screams because we've lost the ability to hear her?"

Somehow our conversation turned into cars and whether our transportation was wrecking the earth or not.  I'm sure it certainly contributes, but given that both Mr. Janney and I prefer older vehicles the tone of the conversation soon changed to makes and models and character.  He recently mentioned something about a car show in NYC that he'd like to go to, something I would have no problem with.

But, back to Mother Earth.

Since I first started writing this post, which is some time now, I've watched two 'end of the world' type movies,  San Andreas, and 2012. If The Day After Tomorrow was available on Xfinity, I'd have watched that one too. I often wonder what would become of society if the world were to drastically change liked depicted in any of these movies, because I often think too much.

For some reason, during the middle of San Andreas, I decided to look up a question about earthquakes.  I don't remember now what the original question was, because as I started typing it into the search field, good old Google suggested 'how many earthquakes today' and I thought...yeah sure,  why not?  It took me to  this link. there were 90 some earthquakes that day, and in the few minutes it took me to post that number on Facebook there were 2 more.  Not big earthquakes, they record anything 1.5 or above.

But that's not really the point is it?

This is probably very normal.  There have probably been dozens of earthquakes daily for millennia.  We're only just more aware of them because of how humanity has spread out and the ease of instant communication.

But then again, that's not really the point either.

What if it hasn't been this way for millennia? I mean, records only go so far back. And, if there was no one around to record an earthquake in the first place, geological evidence aside, it went undetected and unnoticed.

Her future is ours.
What if it is Mother Earth trying to get our attention? I dare say, she'll continue to scream louder until she gets our attention if this is so. What is all our drilling and digging and deforesting doing to her? I'm far from a scientist, but it's a safe bet that we're damaging our planet.  Whether it has a 'spirit' or not is beside the point.  We only have one planet, and her future is our future.

Knowing human history, I do wonder if we'll change our ways in time to save her and remain living here.  Pretty much because I know I wouldn't be chosen to survive the Apocalypse.  They always save those seats for the rich and the young and the smartest. I might randomly survive, but you see characters like me killed off all the time in these end-time movies. (Someone had better take copies of my books along with them!)

I guess I'll end my soapboxing now by asking: have you ever felt an earthquake?  I have, although I live in rural Pennsylvania.  I was one of the few Pennsylvanians who felt the 2011 earthquake in Virginia. Neither places are the first to come to mind when you think of earthquake.  I still think about that day.  I was on the phone with my mother, who was in upstate NY and didn't feel  much of anything. But I most certainly did.  I felt as though my washer was spinning out, unbalanced...although the machine wasn't even running.  And I remember looking at my walls, and I even said to my mother on the phone, "Why are my walls moving?" I was confused, and tried to stand up ... and staggered. And then it was over. It was short enough that I didn't have time to be scared.  It was weird, because I had neighbors who didn't feel a thing, and neighbors who did - and if you know anything about trailer parks, you know how tightly we can be packed.

Until next time, hope you are having a good week and are ready for the weekend!