The life of a 20-something cancer patient: Tinsley

The life of a 20-something cancer patient: Tinsley: One of the most profound senses of comfort, in my opinion, is when someone is there to hold your hand.  Holding someone's hand is a sim...

The life of a 20-something cancer patient: Courage and Strength

The life of a 20-something cancer patient: Courage and Strength: It takes strength to be firm, It takes courage to be gentle. It takes strength to conquer, It takes courage to surrender. It takes stre...

Tinsley

One of the most profound senses of comfort, in my opinion, is when someone is there to hold your hand.  Holding someone's hand is a simple gesture that warms the heart and can magically eases the pain.  Whether you are scared, nervous, anxious, sad, frustrated, and/or angry a gentle grasp of two hands can help heal even the deepest wounds.

I recently made(well, ordered and enhanced) blankets for the children at the hospital to replicate the feeling of coziness when there may be no one around to hold their hand.  I know cuddling up in a blanket provides me relaxation, and allows me to escape the agony, if even for a short period of time.  "My" kids have caught onto my hand holding/security blanket concept, and recently adopted it as there own.  Whenever they are sick, having a pain filled day, or have been though many procedures/treatments they can grab hold of their personalized source of relief.  Every time I go to visit them, I see the their specifically illustrated sports team and Disney themed blankets on there beds.  Many of the parent have approached me to tell me, (as they fight back tears) how creative, patient and sincere I am with the children.  In that moment they told me of how my time, effort, and generosity benefit the parents just as much as the children.

Yesterday was the holiday party for the children at the cancer center.  As they were playing with their new toys, many parents and grandparents surrounded me to thank me for activities I have thought up and organized over the past year.  They thanked me fifty times over.  I explained to them that their thank you's and acknowledgement was unnecessary.  I am thrilled every time I get to spend time with all of the precious children going through such a challenging time in their lives.  I also want to support their families while their children, nieces, nephews, siblings, and grandchildren battle such terrible illnesses.  I understand the struggles they face financially and emotionally.  My family and I are going through the same obstacles.  Many of the families use me as a sounding board.  They come to me for advice and to explain the diagnoses from the medical staff.  Since I have been dealing with health woes for years, I understand most of the medial jargon.  I can translate most, if not all, the doctor lingo to maintain their understanding of what their child is going through.  It is always encouraging to see the relief on the parent's faces after I give them the run-down in layman's terms.

One of the most humbling and sincere questions I have ever been asked(and will likely be the only time this will be requested of me) came to my attention a few weeks ago.  Tinsley is a 7 year old girl whom was diagnosed with a large brain tumor one year ago.  She recently had to undergo a risky surgery to remove the tumor before it damaged any more of her brain, and to relieve pressure in her skull.  I was devastated when I heard that the surgery was her only option.  My heart ached for her and her family.  Then she blindsided me with a very specific inquiry.   She told me that she knew the surgery was her only hope.  Then she shocked me with her question.  She asked me to be in the operating room with her while the doctors operated on her.  She basically gave me an ultimatum.  She very firmly declared that she would not have the surgery unless I was in the OR.  She went on to explain that only way she would survive the surgery was if I held her hand during the operation.  I was obviously hesitant to give her any sort of answer.  I told her that she should have one of her parents in the OR with her.  She glared directly into my eyes and said "no".  The only person she wanted there during the surgery was me.  She was adamant about her choice.  I refused to answer her question until I talked to her parents and her medical team.  I had no idea how to cultivate the conversation I needed to have with Tinsley's family.  I was terrified to discuss the issue with her parents.  I felt I was imposing on a parental duty.  The last thing I wanted to do was step on anyone's toes.  The beginning of our chat was cold, sterile, and a bit hostile.  Her parent's didn't understand why she wanted me in the OR instead of them.  I expressed to them that I would only go through with Tinsley's appeal with permission from them. I confronted them about their trepidations.  I reasoned with them about all of their concerns.  I also reassured them that I only had their daughter's best interest at heart.  After listening to what I had to say and discussing between themselves, they asked me to go through with it.  The understood how crucial this surgery was and they wanted to make sure Tinsley was in the best frame of mind before enduring such an invasive procedure.  I was overcome with surprise, and to be perfectly honest, I was filled with fear after they made their decision.  They would, of course be able to view the operation from the upstairs lounge, so they would still be "with" her while the surgeons performed the extraction.  Both of them hugged me before telling me that they knew Tinsley needed me right there beside her.  I was the strongest and most qualified for the job.  That sent a wave of anxiety over me.  I was fearful that I would let Tinsley and her parents down.  I was also nervous about getting in the way of the doctors and nurses while they were doing their jobs.  The fear was paralyzing, but I knew I had to do this for my dear friend and her loved ones.

The doctors were operating on her brain, so they had a shield up from the small girl's shoulders.  I was sitting on Tinsley's left side, so I wouldn't see anything too grafic.  Before the operation began the surgeons took me to prep and sanitize before entering the OR.   I didn't see or say any thing except for whispering in the sweet little girl's ear that I would be right there beside her the whole time.  Within minutes the four hour surgery began.  I never let go of her precious tiny hand.  I kept one of my hands grasped under her's and with my other hand I would sketch small familiar pictures, and write encouraging words with my finger tip on the top of her small lifeless hand.  I kept an eye on her vital signs, tightly held her hand, and glanced up at her parents every so often to assure them everything was going as planned.  Before I knew it the surgeon was closing the incision and getting ready to wheel her to recovery.  The medical staff allowed me to stay by her side until she woke up.  When she came to she said that she felt my presence with her the entire time.  Hearing those words filled my heart.  I gave her a giant hug and told her I was going to step out and let her parents come back to see their baby girl.  I was rushing to get out of the recovery room because I didn't want Tinsley to see me cry.  I second I reached the waiting room I crumbled.  My tears were a mixture of relief, happiness, inspiration and  hope.  This one little girl has left an impression on my life that can never be tarnished.

Luckily, the surgery went off without a hitch.  The doctors explained to her parents how well she did and she should heal up nicely.  The sense of relief was tangible throughout the entire hospital unit.

After talking to the doctors Tinsely's parents made a bee line to me.  They embraced me tightly and thanked me profusely.  Trying to hold back my tears and turn into a blubbering mess again, I squeaked out that I did nothing.  It was Tinley's strength and will to live that got her through the surgery.  She taught me many life lessons that day.  Lesson about love, life, strength, courage, a having a fighting spirit.  Those lessons will live in my heart forever.

Tinsley thought she needed me that day, but it turns out I was the one in need of a hand to hold to restore my faith in healthcare.  Witnessing a miracle first hand fails in comparison to anything I have ever experienced in my life.  I am deeply humbled by the entire situation.  We all need someone to be there through our darkest hours.  Tinsley and her parents knew she specifically needed my hand to hold that day.  As difficult as it was her parents acknowledged that, they granted their daughter's wish.

Hospitals and cancer centers provide miracles every day.  That particular day four people's lives were forever changed.  That day will live with me until my dying day.  Tinsley has enriched my life in a way I never could have imagined.

We all have to admit that life is the most difficult puzzle we will ever try to put together.  Remember to do the things in life that are best and most important to you.  Do what your heart, head, and gut tell you is right.  Things might fall apart for a while, but eventually the rest of the pieces will fall into place.

Courage and Strength

It takes strength to be firm,
It takes courage to be gentle.

It takes strength to conquer,
It takes courage to surrender.

It takes strength to be certain,
It takes courage to have doubt.

It takes strength to fit in,
It takes courage to stand out.

It takes strength to feel a friend’s pain,
It takes courage to feel your own pain.

It takes strength to endure hardships,
It takes courage to overcome the struggle.

It takes strength to stand alone,
It takes courage to lean on another.

It takes strength to love,
It takes courage to be loved.

It takes strength to survive,
It takes courage to live.

Life is worth fighting because it empowers us with abiding strength,                                          Courage is waking up everyday with the determination to fight.

Don’t be afraid to face the battle head-on,                                                                                       Hiding from life’s difficulties only revels our cowardness.

The triumph over the war will be well worth it,                                                                          Providing each of us the strength of integrity from deep within.

The life of a 20-something cancer patient: Connections

The life of a 20-something cancer patient: Connections: The holidays always bring an abundance of emotions.  The festive lights, decorations, and cheerful demeanor of most people you encounter thi...

Connections

The holidays always bring an abundance of emotions.  The festive lights, decorations, and cheerful demeanor of most people you encounter this time of year is refreshing.  Smiles on children's faces and the anticipation of spending time with the ones we love is palpable.  The joyful sounds of seasonal music and holiday stories warm the heart.  No matter where you are, or whom may cross your path, spirits are lifted and positive greetings are exchanged.  It is the one time of year we allow ourselves to become fully immersed in the enthusiasm and joyfulness of season.

Spending many hours, days, weeks, or months at the hospital/cancer center can put a damper on holiday cheer.  Most patients are able to escape the sadness and despair being sick during the holidays can easily bring.  I will be the first to admit that I have fallen victim to the woes poor health brings to such a festive time of year.  I become depressed and overwhelmed with guilt.  I cannot attend holiday parties, I am unable to travel home to spend time with my family, and it is a challenge to purchase gifts for loved ones because of the many financial struggles living with a serious illness brings.  I wish I could buy amazing gifts for all the remarkable people in my life.  Luckily, with the help of fundraisers I am able to share gifts and delightful encounters with "my kids" and many other patients at the hospital.

Over the years I have realized and embraced the true meaning of the holidays.  This time of the years is not about parties, gifts, and other materialistic novelties.  The holidays present us with the opportunity to connect with those around us.  Holiday cheer is universal.  Our religious backgrounds may differ the way we celebrate, but it does not change the fact that this is the most magical time of the year.  November and December allow us time to slow down.  Instead of keeping up with the daily grind of life, we can take time off to celebrate.  We can reconnect with family and friends, but we can also connect with complete strangers.  Our hearts are lighter, our eyes sparkle brighter, and generosity is much easier to come by.  Connecting to one another during the holidays comes effortlessly.  It can be exchanged through something as simple as a smile.  Many of us find it easier to bridge gaps and connect when there is so much love in the air.  Sending cards, exchanging gifts, swapping festive stories, attending holiday gatherings, and going "home" again brings us all closer together.

No matter what situation you many be in, what hardships you may be going through, the holidays provide a bit of a reprieve.  The chance to step back from day-to-day life and be grateful for what is truly meaningful in life.  What is life without happiness and love?  Don't allow yourself to become consumed by the issues in which you are not passionate about.  Remember to keep the lines of communication and connection open.  I am positive it will contribute to a richer and more peaceful life.  Isn't that what we are all searching for?  I know my life is much more blissful because of the deep connections I have made over the years.  I may never be rich or famous.  I may have to deal with intense health issues for the rest of my days, but I can live with that.  I cannot live without the company of good people.  I would rather have a vast network of friends, family, acquaintances, and those I have yet to meet than live an empty existence.  Share you life with others and the reward will be the greatest gift ever received.

The life of a 20-something cancer patient: If I would let myself tell youWhere I’ve come and ...

The life of a 20-something cancer patient: If I would let myself tell youWhere I’ve come and ...: If I would let myself tell you Where I’ve come and gone If I would let myself tell you How far I have run If I would let myself tell you Wh...

If I would let myself tell you
Where I’ve come and gone
If I would let myself tell you
How far I have run
If I would let myself tell you
Where I now stand
Then maybe you could help me
And tell me you understand 

If I would let myself tell you
About my hidden, darkened fears
If I would let myself tell you
Of my struggles through the years
If I would let myself tell you
My joy of breaking through
Then maybe you could help me
Continue what I do

If I would let myself tell you
Of the battles in my heart
If I would let myself tell you
What shatters me apart
If I would let myself tell you
How fragile I can be
Then maybe you could help me
Escape and just be free 

If I would let myself tell you
Why I struggle with each word
If I would let myself tell you
How I’m scared of being heard
If I would let myself tell you
That I wish I could let go
Then maybe you could help me
Because then you would know 

If I would let myself tell you
Then all this could disappear
If I would let myself tell you
Then you’d see me crystal clear
If I would let myself tell you
Then at least my tears would flow
Just maybe, maybe now
I’ll allow you to know