Thursday, December 07, 2017

Waiting and Patience

Many of us have sat in a hospital waiting area for a family member or a friend. Maybe it’s for a joyus occasion like the arrival of a new baby. Maybe it’s for an elected procedure, necessary or not, you still choose to wait.  Maybe it’s under the context of an emergency.  I’ve done all but the last.  I was waiting for the emergency operation, but I was the one being operated on.  I often think about this day, those that led up to it and those many that followed.  I would certainly say my family & friends had more angst about my craniotomy than I did.  I have a picture taken right before surgery and I look dazed. Maybe it was due to the medications that were pumped through my body to best prepare me for the major surgery I was facing, maybe it spoke to just how sick I was.  I honestly don’t remember that day at all. I remember in great detail the day before until I had my first Grand Mal Seizure and then it all goes blank until I was coming to after surgery.  I have snapshot moments over the next day or two after surgery but some major gaps.  Overall they aren’t easy to deal with.  I don’t ruminate on them long because I remember the tough emotions I was experiencing.  Because of all the medications I was on following surgery, I am not sure how accurate my memories are though.  At times these drugged altered memories have proven to be both frustrating and funny.  I so desperately wish that I had pictures to document those first days. I hear I was a mess. I was very colorful with large bruises up and down my arms, one side of my face was turned down as if I’d had a stroke, my face was swollen, I drooled because I could not swallow and I had many pieces of medical equipment attached to me to keep me alive.  I’m sure my hair was matted and filled with dried blood flakes too.  Thankfully they didn’t have to shave my head, although Darren tells me that I tried to give permission for it.  He was smarter than me, as in many cases, and informed me that my hair would remain intact.  I was so glad of this later on when I was finally able to look in a mirror and glance into a face I certainly didn’t recognize.  Pictures from that time in ICU are hard to look at, yes, its incredibly sad, but I don’t look like me.  My eyes are distant, glazed & wonky.  I felt like a Monster.  Thankfully, I had some incredible Nurses during my hospitalization and one night one nurse Joe decided I needed some freshening up. He had washed my hair days before and had given me a unique hairstyle, Princess Leia buns, but he decided I needed another grooming session.  On that special makeover night, Shari, Mom #2, was staying the night with me and she had a big hand in this pampering session with Joe.  Because I wasn’t very ambulatory yet they made a makeshift ICU hair washing station.  How I envisioned my bed & myself is probably far from what it actually happened.  My hospital bed was raised high into the air and the end that my head was at was tipped down toward a trash can that had been lined with trash bags to catch the water that was being used to wash my hair.  It was incredible to finally have my hair cleaned, brushed and put into Joe’s now famous Princess Leia buns.  I felt like a new women! What a treat that truly helped to restore part of me that had been so broken.  During my hospitalization and in the months after there were many times that I felt more like a monster than a person.  This act of service made me feel special & valued.  I will never forget all the compliments on my hairdo.  It actually became my hairdo of choice while hospitalized because it allowed my hair to be up and away from the staples in the back of my head. It was especially helpful when I moved into Rehab three weeks after I entered the hospital for my brain surgery.  Each step of recovery seemed to take forever.  My physical therapist LeeAnne had explained to me many times that my recovery would ebb and flow.  I would take two steps forward and one step back.  In my ICU room, my husband Darren, drew a progression picture on my dry eraser board.  He had a little car that moved toward a goal line. As I accomplished new tasks or skills the car would move forward, sometimes it stayed stationary as some skills or tasks seemed to take forever.  The first skill I remember working on was relearning my center of gravity.  When I finally regained the ability to move myself in bed, when the nurses no longer had to come adjust me in bed, I would try to sit up and my therapist would tell me that I was leaning far to the right and that I needed to correct myself to center.  A mirror was put in front of me and my family was instructed to cue me to correct my posture when it was off. Over the six weeks I was hospitalized, she explained to me many times that my brain was lying to me and it was my job to correct it.  As I understand it,  your brain has the ability to regenerate neural pathways that have been broken or injured.  After I relearned my center of gravity it was time to get moving. Lying in the hospital bed had been devastating to my muscle tone.  When I entered the hospital before surgery I still some pregnancy weight on but I began to melt away, losing over thirty pounds in just over a week and a half.  I had become just a shell of myself.  Due to my lack of muscle tone, spread abdominal muscles from just being pregnant, and a giant lack of muscle coordination I had to start slowly.  LeeAnne’s first goal was to get me to sit in a chair.  She was armed with a gait belt and a lift team to get me transferred the few steps from my bed into a recliner chair in my room.  I stayed there for over four hours.  It was hard work for sure, but it was the start of something big.  I remember LeeAnne also had me working on getting comfortable sitting on the edge of my hospital bed.  This sounds like a simple move, but for me, it wasn’t. My brain was fuzzy and dizzy and I’d often feel like I would tumble from the bed onto the cold floor below.  After numerous trials, I told her that I was comfortable with this and she decided that it was time to get me up and working on standing & my first steps.  The hard work was only beginning.  I remember having an entourage every time I headed out to walk.  LeeAnne would be in front of me, ready to catch me at any moment.  Someone would also follow me with a wheelchair, my oxygen, and my IV pole.  The first time I only managed to walk a few inches. The second time I pushed even further and went 20 feet.  Then it was 70 feet. LeeAnne told me that soon I’d be walking around the nurses stations in ICU. I think I audibly laughed as the idea of that seemed impossible to me.  Another day passed and I did it.  To challenge me further,  she tied weights to my ankles.  I felt like I had cement boots on. Even before I started down the path to relearning to walk, I was almost derailed completely from pain.  Every part of recovery was slow and it seemed to take forever, especially swallowing.  About a week and a half into my stay in the ICU, in an extreme state of sleep deprivation, I had actually managed to fall asleep and had an incredibly realistic feeling dream. I dreamt that I had two nasogastric tubes, one in either side of my nose.  During my dream I came to the conclusion the extra tube needed to be removed so I started to do that.  Unfortunately, I woke up in a groggy state doing just that, I was pulling out my only nasogastric tube.  I began to become upset which woke up my sister Jaime who was sleeping in the recliner chair next to my bed.  This tube had been responsible for delivering all my food & most of my medications to me in the days following surgery. By the time I had pulled the tube mostly out, I finally was awake enough to realize what I’d just done. I was devastated and immediately overwhelmed.  I remember having the nasogastric tube placed and the thought of enduring it again was terrifying.  I remember how the Nurses had tried a few times to place it in ICU, but were unable and so I was sent to Radiology for them to place it.  In my drugged & sleep deprived stupor, I thought that the Radiologist had sat on my chest and forced the tube down my nose & throat into my stomach.  It was so painful and scary.  I told my sister Jaime that the procedure was worse than childbirth.  Little did I know what was to come.  Because I had removed the nasogastric tube and I still was unable to swallow discussions began about a more permanent solution.  A peg tube was suggested and my anxiety and fear became crippling.  I was convinced that I was dying and this was the last resort to buy me a little more time.  You see my only experience with a feeding tube were when my Grandma Lorraine was fighting Cancer when I was 15.  She had to have a feeding tube and I remember she declined rapidly after that.  I remember learning how to feed her and now it looked like that was becoming my reality.  I was convinced that a feeding tube was the final nail in my coffin.  The Doctors, Nurses and my family pled with me and guaranteed that I was getting better and this peg tube would help me as I continued to recover.  After much conversation, I agreed to allow the peg tube to be placed.  The next day, two Gastroenterologist Surgeons and their Nurses came into my ICU room to perform the procedure.  I was given some medication to make me relax and go into a dozed state.  I remember most of the procedure and how they advanced things down my throat and then popped up through my abdomen.  I remember well the intense pain I had following the procedure when the feel good meds wore off.  It was the most excruciating pain I’d every experienced.  On a pain scale of  1-10, it was a 20.  My Mom and Darren watched helplessly as I cried out in pain.  The pain meds I was to receive would wear off 15 minutes before the next dose was set to be given.  My Mom kept asking the Nurse what they could do for me.  It had been explained to me that recovery from a peg tube wouldn’t be bad. However, I had three things against me, my age, my abs were still separated from just being pregnant, and I developed chronic hiccups that we couldn’t find a cause of, so my initial recovery was far from easy.  Finally my nurse called my primary ICU doctor and he gave permission for a pain pump to accompany the fentanyl patch I had for pain.  Finally, I had relief from the constant pain.  Even recovery from my craniotomy wasn’t as bad as this.  The day after the peg tube  procedure LeeAnne walked into my room, ready to get back to work. Instead of a can do attitude she was met with a hot mess. I still hurt badly from surgery and it felt weird moving with this new foreign appendage.  I was so worried I would fall or make some sort of movement and accidentally rip it out.  The whole thought of that, the pain it would cause, and the fear of having to go through the procedure again was crippling.  LeeAnne listened and tried to reassure me that it would be fine and that she wouldn’t let anything happen to me.  I was just so scared. After many attempts trying to convince me to get up and moving and me trying desperately to talk her out of it, she pulled out ‘the talk.’  I’m not sure if she has to use this talk with each one  of her patients or if this one was handcrafted just for me.  She looked at me and said something to the effect of put on your big girl panties and lets go, or I’m gone.  She wasn’t messing around.  She was done with the little dance we were doing and I had to decide to get going or she was going to get going.  I knew I needed her to help me get better and I was afraid she wouldn’t come back and help me, so I figuratively pulled on my big girl panties (I was still modeling the latest hospital gown style) and got going. I didn’t slow down either.  For the rest of my time in the hospital (about more 4 weeks), I pushed myself.  Even when I was tired, which was all the time (I got maybe 4 hours of sleep at night), was dealing with Pneumonia (I developed in the hospital), even after heartbreak when my initial release date came and went, I worked hard.  It didn’t come easy or fast, it took patience, hard work, determination and lots of prayers. Thank you again & again for those of you who were praying for me & cheering me on, what a difference it made! 

Sunday, November 19, 2017



Its one of the first things people notice  when they meet you.  Other than your appearance, it allows them to begin to judge/evaluate/inspect/critic you.  Other cues allow us to determine additional information about that person, but we mostly form our opinions/thoughts/conclusion about this person before many conversations are even had.  I’d assume thats human nature.  When we first meet someone with an accent, we assume they are from a foreign country. Someone who has a cold often has a particular sound too.  However there are those rare occurrences where we can’t quite place the sound we are hearing.  I assume thats where I fall.  Before my brain tumor, I didn’t make much fuss about my voice. I used it in various venues- I sang at Church, I worked in customer service, and as a Mother of a toddler, I constantly had opportunities to talk, sing, correct & teach my son. I also was/am quite social so talking was just what I did/do. I am still timid about my voice when I meet new people & other times I’m sometimes lazy about my speech with those I’m familiar with.  You see after my brain tumor, I was unable to speak. I was capable of making sounds but what came out was sluggish garble.  I was diagnosed with aphasia. Aphasia is defined by as “the loss of a previously held ability to speak or understand spoken or written language, due to disease or injury of the brain.”  I remember coming to after surgery and within moments being filled with panic and dread. I remember trying to tell the nurses I couldn’t swallow but when I spoke I sounded much like a zombie groaning. I remember someone saying that it must be swelling that was causing my trouble swallowing & difficulty speaking.  Nope & nope.  I had just had a brain tumor peeled off my brain stem and apparently some damage had been done.  Thankfully, I had a default I knew could help me communicate as I could tell from conversations around me that my Doctors & Nurses weren’t just trying to evaluate my speech, but also my ability to comprehend.  I began to use simple sign language which I think both impressed & overwhelmed them at the same time.  They knew I was still in there, but they had no one to translate. Finally, they got my sister Jaime and she picked pieces of what I was saying from a language we had briefly learned (the alphabet) in our childhood.  Shortly after this they gave me some paper and pen to use for communication.  Wow! I still have these initial writings and those that followed in the days and weeks I was hospitalized.  They are hard to look at but they provide a clear outlook into the chaos and disorganization my brain was enduring following brain surgery.  In those first few hours after surgery it was also discovered that I couldn’t move my body either.  Shortly after surgery, I earned the diagnosis of ataxia and apraxia which defined by suggests my inability to move also had to do with loss, ‘loss of coordination’ in my muscles & the ability to ‘perform purposeful movement.’  To sum it up, I was a hot mess... sad thing was these diagnoses didn’t cover all the deficits I had to deal with. I also couldn’t swallow, had double vision (strabismus), didn’t recognize my center of gravity, and then there was my paralyzed vocal chord.  Every one of these things presented its own challenges & when added to the picture of healing from brain surgery, made the outlook seem impossible.  Many hurdles also developed along the way: pneumonia, the giant DVT (blood clot) that formed (due to medical error) from the bend in my elbow up to my shoulder, orthostatic hypotension (blood pressure mystery), and chronic hiccups just to name a few. I had a giant battle in front of me. 

Thankfully by God’s grace, I have travelled so far from that scary time.  Some progress was quick while other was painfully slow. I spent hours doing Occupational, Speech & Physical Therapy.  I was surrounded by incredible family, therapists, Doctors & Nurses that also deserve credit for my recovery. I know I am beyond blessed & I give the glory to God for restoring me.  Do I still have difficulties & deficits? I do and i’ve come to realize I might always.  Some days accepting that is doable while other days the thought is defeating.  So why am I thinking about this experience now?  It isn’t a special day or anything.  Last week I was in the Dentist office getting some work done and when I returned upfront to pay & checkout, one of the ladies commented on my voice.  Instead of saying something I feared, she told me she liked my voice because it reminded her of one of her children’s friends and she really liked this child.  I quickly commented well this isn’t my real voice.  Another gal at the front desk joined the conversation and when I said that, they both looked at me perplexed.  So I told them the brief version of what had happened.  They both looked at me shocked. So i finished my story as I always do, giving God the glory for it all and commentating on how blessed I am.  This experience has not been easy but its been blessed.  What a perfect time of year for this? Be mindful and thankful.

Be Blessed.

Monday, April 10, 2017

Gertrude Attacks

Too bad it's past April Fools Day - I was going to post a picture on Facebook introducing my new baby that we were welcoming on Wednesday (and tag my blog that told about the gallstone) to see if people just read the brief comment with the picture & said Congrats on the new baby or if they read the attached blog & discovered it wasn't a baby I had in my ultrasound picture.  Wonder how fast talk of a baby would spread? Guess that's the social psychologist side of me... Dr. Ponsford 😊

So Tuesday of this past week, I developed a very sharp pain in my back right below my shoulder blade. I figured I was standing wrong or had pulled something so I brushed it off, telling myself I'd stretch later. A few hours later the pain continued and as a sat waiting to pick the boys up from school, I struggled to get comfortable. Each position I shifted into provided only moments of relief. I tried to push the pain & discomfort out of my mind, but no luck.  By bedtime I was so achy that I had camped myself on my heating pad, hoping for some relief.  After putting the boys to bed I got ready for bed & noticed the pain shifted forward to under my ribs. This of course concerned me & I took my blood pressure... it read 179/105 and I became even more concerned.  I had Darren call my Mom to sit with the boys while I headed to talk to Zach as I knew he was still awake & would be scared if he saw his parents leave without telling him why.  I explained to Zach what was happening & that I was heading to the ER to get checked out. We hugged & prayed and then I headed out.  I arrived at the ER and because of my chest & back pain they got me right in.  I was instantly hooked up to an EKG machine. Thankfully results were fine. Over the next hour labs were run & meds for pain & nausea were given.  The Doctor suspected gallstones and said I should follow up with my primary Doctor. I returned home feeling a bit better but wondering.  I stayed home from work the next day to rest & felt bloated & full. I hardly ate as I didn't really have an appetite.  The pain hadn't returned, but had morphed into a tender spot under my rib & shoulder blade.  That evening I was nauseous & had a slight fever. It was a terrible nite without rest. I contacted work & my boss insisted I come in & have one of fantastic ultrasound techs scan me in between patients to see if I had a gallstone/s.  So I did.  Within moments of beginning the scan, I had my answer, a decent size gallstone. I lovingly named her Gertrude 😂 I had previously called my Doctor to make an appointment & she squeezed me in for the afternoon.  I took my ultrasound pictures to my Doctor & she asked if I had a preference for a surgeon.  I had already done my homework & asked my sister Wendy who she recommended & then found out who took my insurance so I was ready with an answer in case she asked.  She excused herself & called the Surgeon directly.  Upon explaining my situation, my now Surgeon made room in her schedule for a meeting & surgery too. As I write this, I'm sitting in Pre Op Registration... Surgery is set for Wednesday at one, prayers are always appreciated.


Monday, March 27, 2017

Mud & spit

Jesus Heals a Man Born Blind
9 As he went along, he saw a man blind from birth. 2 His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
3 “Neither this man nor his parents sinned,”said Jesus, “but this happened so that the works of God might be displayed in him. 4 As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. 5 While I am in the world, I am the light of the world.”
6 After saying this, he spit on the ground, made some mud with the saliva, and put it on the man’s eyes. 7 “Go,” he told him, “wash in the Pool of Siloam” (this word means “Sent”). So the man went and washed, and came home seeing.
8 His neighbors and those who had formerly seen him begging asked, “Isn’t this the same man who used to sit and beg?” 9 Some claimed that he was.
Others said, “No, he only looks like him.”
But he himself insisted, “I am the man.”
10 “How then were your eyes opened?” they asked.
11 He replied, “The man they call Jesus made some mud and put it on my eyes. He told me to go to Siloam and wash. So I went and washed, and then I could see.”
12 “Where is this man?” they asked him.
“I don’t know,” he said.
The Pharisees Investigate the Healing
13 They brought to the Pharisees the man who had been blind. 14 Now the day on which Jesus had made the mud and opened the man’s eyes was a Sabbath. 15 Therefore the Pharisees also asked him how he had received his sight. “He put mud on my eyes,” the man replied, “and I washed, and now I see.”
16 Some of the Pharisees said, “This man is not from God, for he does not keep the Sabbath.”
But others asked, “How can a sinner perform such signs?” So they were divided.
17 Then they turned again to the blind man, “What have you to say about him? It was your eyes he opened.”
The man replied, “He is a prophet.”
18 They still did not believe that he had been blind and had received his sight until they sent for the man’s parents. 19 “Is this your son?” they asked. “Is this the one you say was born blind? How is it that now he can see?”
20 “We know he is our son,” the parents answered, “and we know he was born blind.21 But how he can see now, or who opened his eyes, we don’t know. Ask him. He is of age; he will speak for himself.” 22 His parents said this because they were afraid of the Jewish leaders, who already had decided that anyone who acknowledged that Jesus was the Messiah would be put out of the synagogue.23 That was why his parents said, “He is of age; ask him.”
24 A second time they summoned the man who had been blind. “Give glory to God by telling the truth,” they said. “We know this man is a sinner.”
25 He replied, “Whether he is a sinner or not, I don’t know. One thing I do know. I was blind but now I see!”
26 Then they asked him, “What did he do to you? How did he open your eyes?”
27 He answered, “I have told you already and you did not listen. Why do you want to hear it again? Do you want to become his disciples too?”
28 Then they hurled insults at him and said, “You are this fellow’s disciple! We are disciples of Moses! 29 We know that God spoke to Moses, but as for this fellow, we don’t even know where he comes from.”
30 The man answered, “Now that is remarkable! You don’t know where he comes from, yet he opened my eyes. 31 We know that God does not listen to sinners. He listens to the godly person who does his will. 32 Nobody has ever heard of opening the eyes of a man born blind.33 If this man were not from God, he could do nothing.”
34 To this they replied, “You were steeped in sin at birth; how dare you lecture us!” And they threw him out.
Spiritual Blindness
35 Jesus heard that they had thrown him out, and when he found him, he said, “Do you believe in the Son of Man?”
36 “Who is he, sir?” the man asked. “Tell me so that I may believe in him.”
37 Jesus said, “You have now seen him; in fact, he is the one speaking with you.”
38 Then the man said, “Lord, I believe,” and he worshiped him.
39 Jesus said,[a] “For judgment I have come into this world, so that the blind will see and those who see will become blind.”
40 Some Pharisees who were with him heard him say this and asked, “What? Are we blind too?”
41 Jesus said, “If you were blind, you would not be guilty of sin; but now that you claim you can see, your guilt remains.

John 9:1-41

This past Sunday, my Pastor shared with us this scripture and it really made an impression.  I have spent more time in John than any book in the Bible, but I was refreshed by what he had to offer.  Thank you Pastor Andy! He titled his sermon Mud, spit & fears.  He introduced us to a man named Jean Vanier who believes:

“The weak teach the strong to accept and integrate the weakness and brokenness of their own lives.”

Vanier’s explains that  people 'really blossom when they are welcomed as they are, with their gifts and their weaknesses together'... what a beautiful thought!  Instead of getting hung up on our differences, we embrace them & accept them for what they contribute. Imagine what a wonderful world that'd be.

For someone whose struggled to understand how to accept myself & to accept how others welcome me has been/is still a challenge.  I still see myself broken.  However, by Gods grace, I've never spent too much time allowing myself to wallow in that.  I've tried to acknowledge Gods amazing presence in each detail of it.  Have I always done this? Or done it well? Certainly not.. I fail often.

In the scripture above it talks about Jesus healing the blind man.  As Pastor Andy explained, blindness was often blamed on the sin of the person afflicted. Jesus squashed that idea and explained that he wasn't blind because of his or his parents sin, but because it allowed God to be revealed through the work of Jesus.  Pastor Andy also shared the issue of fear and how that played a role in this story.  Fear prevented those who knew of this miracle to proclaim it. I know there are a number of times I have stayed silent instead of speaking up.  Throughout my brain tumor, I've been aware of Gods hand on me and I only hope I've been fearless talking about my miracle.

May we all be fearless & bold when it come to Gods handiwork.  May we see the beauty in each other & look for the gifts we each have.

Favorite song that encourages me on this matter is Fearless by Jasmine Murray ...

Be blessed.

Tuesday, February 28, 2017


Today is Rare Disease Day and Brain Tumors are considered just that!  Wow! Rare! Hmmm... What do I think about that and the fact I got one??? Over the last seven years, I have had a lot of time to ponder the whys? I never allowed myself to wallow in the 'poor me' talk very long.  Instead, I chose to focus on the why nots? I accepted the facts I couldn't change.  I didn't argue with the statistics, I took Dory's advice & kept swimming.

So what about those why nots?  During my first few months of recovery, I heard from family, friends, Doctors, Nurses, Therapists and strangers... asking - but why you?  I quickly got sick of hearing those questions and began responding with why not me?

Guess what? I still don't have an answer to that question either!   It does however requires me to fully evaluate my circumstance, even today, and forces me to make a choice, be thankful or not?  I'd like to say I always choose Thankfulness, but I still find it tough sometimes to deal with my lingering deficits. It's hard to admit your shortcomings, real or unreal.  Things I see as roadblocks may seem trivial or silly to others, but to me they still matter.  I question so much of how this situation changed me, hoping it's mostly for the better,  but recognizing some is not.  I know I'm speaking in generalities, but I'm still not comfortable airing all my insecurities.

When all is said & done, if I've know you for a month or for years, I hope I have come across as someone who is Thankful that I have had this brain tumor experience.  I will never have the 'reason' that this happened, but throughout it all, I've been blessed more than I can say and I'm grateful for that.  I've discovered many truths throughout this.  Truths about God, people, love, healing, possibility and about myself.   I'm making lemonade from these lemons.  I'm turning my mess into my message.  I've been blessed by so many, I hope I've returned the favor & continue to do so.

So on this Rare Diseases Day, I'm going to embrace the fact I'm RARE and be glad with that.

Be Blessed