Tag Archives: rehabilitation

You Raise Me Up

One of the joys for me in sharing my story with you is allowing those who have been there with me, through the ups and downs, to share their own story – from their point of view.  As I alluded to a few posts back, my inspiration through my own personal battle was my mom. 

A breast cancer survivor herself, she never missed a beat and always had the most positive outlook on life.  While always keeping a positive attitude and outlook on life, she never stopped being an amazing mother to her three children and wife to her husband.  When I was diagnosed, I could not help but to relate to her and use her positivity as my own inspiration.  I can never say it enough – thanks Mom, I love you. 

As Chris’ mom, I cannot write my version of the story from one moment.  All of the moms out there know that we pretty much all live in the moment or the day that we are in.  So my story and memories are spread out over almost 6 years, and there is not a day that goes by that I do not remember what Chris had to endure through those years.   Actually, I should re-phrase that – it is not only what he has been through, but also what he must go through for the rest of his life (Moms never stop worrying). When we are blessed to have children they are truly in our hearts and our thoughts forever.  From the time they are born to when they are fully grown, we coddle them, protect them, guide and support them, reinforcing the positives, avoiding the negative – as my husband always said “trying to never put them in a position for failure”.  But then, life throws you a curve ball you didn’t see coming, a health problem, a large one, and you realize that you can do nothing to help your child other then pray.

I am so thankful that Chris’ DNA make-up is how it is…he has been through so much adversity and yet with every new issue and problem, he handles it with such a calmness, patience, and confidence that the end result will be fine. 

I could write many different entries in detail about Chris, beginning with the initial symptoms, to being diagnosed, being hospitalized, surgery, rehabilitation, home care, more surgery…here are a few memories that I would like to share.  

Chris began to have headaches around Memorial Day 2008.  As June rolled forward, he began to experience double vision.  After numerous eye exams with doctors who were not concerned, he continued to work throughout the month.  One week prior to his diagnosis, Chris and I drove to Newport to meet with realtors to look for apartments for him to rent while attending law school.  We saw 4 apartments, walked around the town, talked, laughed, and contemplated what we saw…all the while, I knew he had double vision and was not feeling that good.  When I continued to ask him how he felt, he said, “I’m fine, let’s keep looking.”  

Just one week later, the staff at the emergency room at Yale could not understand how he was even functioning.  Their thoughts were that he had an unbelievable tolerance for pain and that his body and brain had compensated for the tumor…the crooked smile, the slight lean to the right when he walked, the double vision…in retrospect, this was the way his body compensated and allowed him to push on and never miss a beat until that scary day of the diagnosis.   The morning of the initial surgery as he hopped up on the stretcher that was going to take him to surgery he showed no fear, just confidence.  “I have to do what I have to do”.  He smiled and said “I’ll see you later “…strength, courage, and determination.  He makes me proud that I am his Mom.

After two weeks spent in the hospital following the two surgeries, Chris was released from the hospital with strict medical procedures that had to be followed at home.  If I did not agree to them, he would have been in the hospital for at least 2 more weeks.  Chris had developed a very serious, potentially deadly, infection and he needed powerful antibiotics that had to be administered 3 times per day intravenously.  The visiting nurse came to the house the first day to show me how to administer the medication.  My routine began at 7:00 AM, then again at 3:00 and finally at 11:00, for 30 minutes each dose.  The medication regimen was supposed to be for 2 weeks, but again the curse of the summer of 2008 kicked in and his blood counts were not good.  Two weeks became four. Per usual, Chris never complained.  He went along with it all. 

A Tuesday in August – it was going to be a good day.  Our visiting nurse from the Veterans’ Nurse Association came to the house in the morning as she always did once a week to check his IV port and change the bandages.  Once complete, she initialed and dated the new bandages.  That evening we had plans to go to our town green for the weekly concert.  It would be perfect for Chris – we could bring dinner, sit back in our lawn chairs and enjoy the music.  We were going to attempt to do something not medically-related for the first time in 6 weeks.  How we were all looking forward to this!  But before we could do that we had to take Chris to his scheduled MRI.  This was the first MRI done since being released from the hospital.  There were forms to be filled out and as he was in no condition to answer this questionnaire, I filled it out for him.  I signed my name as his guardian to whom questions should be asked.  My husband took a conference call in the lobby as I waited patiently for him to come out to the waiting area after his MRI.   I will never forget the way he was smiling as he entered the room (not sure how after another long head-banging MRI).  I rose from my seat and started walking towards him when I noticed his arm and asked “where’s your IV!?”  He calmly replied “She asked me if I needed it anymore, and I told her NO, so she took it out.”  I’m a pretty calm person, but at that moment I lost it.  How could the nurse ask him that question when she knew his state of mind, not to mention that we were there waiting for him?  I immediately marched back in with Chris only to be told that they were sorry for their mistake.  We were instructed to go across the street to the hospital emergency room where the doctor would meet him and replace the IV Port.  I actually thought that although it would be close, we could possibly make the concert, but in the summer of 2008, not much went the way we expected.  Once again, Chris had to be admitted to the hospital and stay the night, where the next day a surgical team in yet another sterile operating room re-inserted the IV Port back in his arm.

Another night in the hospital, the follow up MRIs, the constant questions, rehabilitation, steroids (that made him want to eat non -stop) and then the round the clock intravenous medications, all of this became our life.  I was no longer just his Mom, I was his caregiver, his nurse, his watchful guardian, and in the state that he was in it was as if he was again my little boy of 6 years old.

One of the joys that summer for Chris was to take a shower, as this was just a simple task that he was actually able to do on his own.  “It’s time Mom, wrap my arm up!”  Indeed I did.  He loved it and I dreaded it, but this was truly one of the joys of his day!  I would wrap up his IV Port in gauze bandages, saran wrap, then plastic baggies.  I feared water would get in.  My wrapping routine paid off as I guess I did a good job – no problems!  But, who would ever think that I could be a nurse?  I’ve always said, “What we will do for our children!”

This was the most difficult period in my life.  Watching my intelligent, well-rounded, happy and most determined son who at this time should have been in law school pursuing his dream, and instead I would watch and listen to him as he sat on the front porch with my husband trying to read 1st grade level books.  I would give him spelling tests for simple words, Stephen would attempt to help him find the middle C note on his beloved piano, I would try to help him as he would struggle with the keyboard on the computer to simply find the letter ‘a’ as he was so determined to write to Ashley.  His speech and words came fumbled and slow.  When I would pick him up in the afternoon from rehabilitation, he could never remember what he had for lunch that day.  I would say some possible choices and his answer was always, ”Yeah, I think that’s what I had.”  Yet, through all that frustration and the private tears shed, there was something about him that I knew, somehow, someday he would be back to my Chris again. Maybe it was his determination, struggling every day trying to re-learn and get better.  But for me, my sign was one afternoon as I was preparing to give him his medicine – he looked right into my eyes and said, “Could you please hurry this up today!”   WOW.   That was my Chris.  So clear, so quick, so witty. 

He was definitely coming back.

Me and Mom“While we try to teach our children all about life, our children teach us what life is all about.”  Angela Schwindt

ABC, Easy As One, Two, Three

So I had my purpose and with that, I tried to find myself again.  I knew that my old self was locked in my body somewhere and it was my hope that the physical and mental rehabilitation would help.  But my steps were baby steps.  I was physically and mentally unable to do anything on my own.  The initial meeting with my therapists did not go well at all and I wanted to permanently escape from the therapy center.  I had nowhere to go though – I was stuck in this world and my regimen was three times per week from 9:00-3:00.  I was to alternate between cognitive therapy to relearn to speak, read, write and think and physical therapy to regain the strength I lost on the right side of my body.  My face was distorted and the entire right side of my body was practically useless.

Walking into the group room and meeting the group I had been placed into was absolutely terrifying and jaw-dropping.   I was the youngest patient by, I’d guess, 20 years.  I was with other brain tumor and stroke patients.  As the new kid in the group, I was asked to introduce myself.  As you can probably guess, I was unable to do it.  Well, maybe I’d be able to tell the group a little bit about myself, such as how I just finished my first year of law school and my career goals.  Couldn’t do that either.  And that’s when it hit me.  Within a matter of a month, I had lost all that I worked so hard for over 24 years of my life.  Gone from my life was socializing with my family and friends, aspirations of earning my JD and practicing law and rekindling my relationship with Ashley.  Defeated and in search of hope, I optimistically looked at the therapist and thought to myself “you can help me, right?”

Following the group session, I was ushered into a room where I would have some one-on-one time with the cognitive therapist.  To assist me, I was given this alphabet boardABC's

I looked at her, she looked back at me.  She had to be kidding, right  – I had to be able to at least know my ABC’s. While I recognized the letter “A” as such, I was unable to communicate that to anyone.  In other words, I could not say what I was thinking at the time.  At that time, the pathologist did not realize the extent of my deficits and moved on to the lowercase letters that you see on the board.  Again, I sat there, unable to say what I was thinking even though I knew that it was the letter “A”.   Sorry Michael, it looks like those ABC’s were not as easy as one, two, three.

Every day, when my parents would pick me up from therapy, they would ask me questions about my day such as: “what did you work on?” or “what did you have for lunch – did you have ham?  did you have turkey?  did you have soup?” They waited for a response, but I did not answer because I could not remember.   More troubling though was that this was all just within minutes of being picked up.  I later learned that my brain was so compromised due to the hydrocephalus and infection that it was feared I could remain in that state forever.   I was left with persistent neurological liabilities, specifically as they relate to the processing of information and the management of language and memory.

The weeks that followed offered little hope to my family, my doctors, therapists or myself.  There was absolutely no progress being made.  With my difficulty in performing simple tasks learned years ago, I began to manifest symptoms of anxiety in social situations.  It was terrifying for me to have someone approach me who did not know what I had gone through or attempt to engage me in conversation not realizing the full situation.  In the grocery store one day with my father, I was just standing there watching the people hurry down the aisles filling their shopping carts and recalling a time that I used to do that.  Not intending to stare awkwardly, I could not help but to reminisce.  As I watched someone go to the beer section and place the six-pack in his cart, I hear a guy say to me “hey kid, is there something wrong with you?”  My father intervened and we walked away but I couldn’t help but to dwell on that moment.  I was going nowhere any time soon.

Yet, without the tireless effort and dedication of therapists, brain tumor patients like myself would never be able to resume their life and share their stories.  Even in the darkest of moments when all hope seemed to be lost, my therapists always smiled and offered me hope.   Day in and day out, they strived to assist me in getting my life back and restoring normalcy in a world only other patients and survivors can understand.  I remain forever grateful to those therapists who worked with me and the effort they each put in to help me get to where I am today.

Mama If That’s Movin Up Then I’m Movin’ Out

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Have any of you ever had a day where you feel like you have no purpose in anything you do, go to bed and repeat?  Well that was my life every day in the ensuing months post-operation.  Despite the many moments that made me just want to cave in and succumb to this new lifestyle, I refused to give in.

“Purpose.  Must find purpose.”  I was determined to not live my life by simply waking up, spilling food all over myself, wandering from room to room forgetting I had just been in there or asking myself “why” I walked into that room, working on my naming skills, trying to read and write simple words learned in kindergarten, watching some TV without any idea as to what the show was even about, sitting at my piano attempting to play just one bar of music, going to bed and repeating. It was a nice thought but reality set in.

After being released, I was still battling a deadly infection and this meant that I would need medication and additional care.  When I saw a car approach the house and two nurses come walking to the door, I thought to myself  “Are you shitting me?”  Luckily they only came to put in the port for the IV and teach my parents how to administer the medication intravenously for the next two weeks.  I couldn’t be happier when they left.  “See ya!  Bye, thanks for coming!”  Wait though – I’m supposed to let my mom handle giving me medication through an IV three times a day for two weeks??

As if I hadn’t known already, that summer reinforced upon me what an awesome mother I have.  She was meticulous in giving me the IV and doing it at the same time every day…yet, I think she was around the nurses a bit too much as she started asking the typical questions such as: “From one to ten, what level of pain are you in?  Do you have a headache?  Do you remember what you had for breakfast?  Can you tell me where we are?  What is your name?”

While it was great to be in the comfort of my own home and surrounded by my family and friends, life was difficult and I was going nowhere fast.  I had moved out of the hospital but not out of the woods.  Something as simple as taking a shower became a hassle.  In order to protect the IV port from getting wet, my poor mother had to cover the port with a medical sleeve, but then for extra measure, she would wrap my arm inside a plastic bag, tape the bag tightly and then cover it all with saran wrap.  Yes, I’m serious.  I felt like Randy from “A Christmas Story”…”Can’t put my arm downnnnn!”  Oh, the triumphs and battles I endured.

At the end of the day though, I didn’t care.  I was alive and I felt that my brain was getting stronger every day even though it was not showing to those on the outside.  While I could never express it, I felt alert and oriented to my surroundings and cognizant of the activity that was taking place around me.  My purpose became clear – I was to smile and enjoy the little things in life, simply because I could, and that I did.