Let me start off to say that my daughter's story is no more or less important or difficult than any other who has faced this horrible diagnosis or heard the words "You've got cancer". It truly is and will forever be the scariest thing to hear and to face. To quote G. Freitas, "There are no victims of cancer. There are only cancer Warriors. Brave soldiers who've fought or still fight gallantly. Their scars sometimes visible, sometimes hidden within. Some survive...some become legends in our hearts and minds forever."
This is Raine's story:
Raine had always been very healthy...rarely a cold or flu. She had turned 20...went to a Lady Gaga concert...took a trip to Jasper with her best friend, stopping on the way to visit her grandpa and grandma to get spoiled...etc. She was living that fun young adult life...working and saving money to go to school. The way it should be. Then she started to feel not quite herself...but it was flu season and so she carried on thinking it was a bug that would pass.
Then she got very sick, very fast...in pain, escalating fevers, chills. She took many trips into emergency, several by ambulance. Then the overnights in hospital, countless blood cultures, each leaving a bruise...a bone marrow biopsy, and finally surgery to remove her spleen. So many doctors, confused and without answers. It wasn't until the spleen was sent to the Mayo Clinic in the U.S. that we got our confirmed diagnosis: hepatosplenic T-cell lymphoma...a blood cancer. Extremely rare...extremely fatal. We were told the only chance to live beyond a few months was many aggressive rounds of chemotherapy followed by an allogeneic stem cell transplant in Calgary.
In the beginning, I was devastated. Sitting in the corner of my dining room, tears of utter pain and despair flowing down my face. Pain beyond anything I could describe wrenching at my insides. A deep, all encompassing darkness settling within my soul. I no longer wanted to move or breathe. I wanted my very life to be over.
The doctors told us Raine had a one in a million chance of beating this...we went home...not a word spoken in the car. I went right to the corner...devastated.
There sat Raine, in her rocking chair, gently rocking, quietly thinking, not making a sound, just calm, no crying.
I looked over at her...perplexed. Why was she not like me? Was she in shock? Didn't she hear the same words from the doctor? They gave her no chance...there was no hope here...there was nothing we could do...this cancer was going to kill her...and trying to fight it would only involve a lot of pain...and then...only to prolong life for a very short amount of time...then it would come back...and kill her anyway.
Yet, there she was, sitting in her rocking chair, not crying, still at peace.
I made myself go over to her...I walked but really deep down inside, I could barely crawl. It took everything I had just to move. I got over to her chair and looked into those beautiful green eyes. She looked up at me, a worried expression on her face...but that worry was not for herself...it was for me. And I'll never forget what she said to me. She said "Mom, are you alright?" I broke down and said "I don't know how I can live without you."
She looked at me and told me something that will always be with me...down to my very last breath on this earth. She said "Mom, we have to hold onto hope...I just feel like I'll be alright."
A voice inside me spoke to my heart. A voice that broke through the darkness and pain. It told me my daughter was right. And that I had to believe as she believed. And that I must hold onto this strange hope she had because I knew it would be what we needed to get us through...this was not over.
Thus began the fight for her life. Raine chose outpatient treatments...but it was not to be. Her very first round of chemotherapy sent her body into shock. She went back to emergency, and then became an inpatient at the Cross Cancer Institute in Edmonton for 3 1/2 months. Round after round of chemotherapy occurred during that time. Some treatments lasted hours, others several days before she would be unhooked from her IV machine. Raine endured it all. None of us knew how much of her former life she would lose in this brutal battle. My heart broke for every piece of her life that got stripped away...her job, her ability to drive her car, her hair, her home, even friends and family who couldn't handle her pain. Not being able to come home broke her heart many times over.
But let me tell you about the most amazing thing about Raine...her spirit...and her hope.
Raine had always been our source of entertainment and laughter at home. And that piece of her, she kept...and shared it with the staff at the CCI. She became one of their favourites...she could make them smile with her whit...and they never forgot HER smile and sense of humor at the end of each treatment, scan, blood culture and test. Somehow, they became her second family...and she became a piece of them.
As far as her hope, the kind that Raine had was not logical, it did not fit the situation...at all. And yet, no matter what Raine was told, her hope was solid. I lost hope several times throughout this battle. The doctors told us at the very beginning her only chance for more life would be a stem cell transplant. But weeks before she was set to have it, Raine became very ill...and the fevers came back. The fevers were a sign of two things: either she had an infection...or the cancer was back. For weeks, they treated her with constant antibiotics but the fevers remained. I lost hope...Raine did not. The last day before her stem cell treatments were to take place, and they were about to cancel her transplant, her fevers stopped. She got her transplant.
During her time recovering from the radiation and intense chemotherapy she was given for the transplant, she suffered long and hard for weeks...it was awful, it was bloody, and it never seemed to get better. Day and night, she suffered. It didn't look like she would ever feel better...and I lost hope again. I cried out in agony for her ...and me...because I couldn't stand to watch the pain another day. Raine never lost hope.
60 days after the transplant, Raine was doing fine...still weak, still exhausted, it still hurt to walk...but she was okay. Then... the fevers returned and she became very ill again. Back to the hospital. Fevers meant one of two things...infection or...the cancer was back. They gave her constant antibiotics...the fevers would not go away. Finally, they ordered a liver biopsy...the results came back...they came in and told us...the cancer was back. They told her she had about 3 months to live. I was devastated...my hope was gone. There sat Raine, after a little cry, she perked up and said she was happy she could go home now. She said she didn't believe in numbers and still...she held onto her hope.
We came home...she was put on steroids which took away the fevers and nausea for about a month. Raine took a short trip to California to visit her boyfriend, spent time with her dearest friends, ate her favorite foods, slept in her favorite bed, sat in her favorite rocking chair...and held onto her hope.
After that month ended, she was back in the hospital with a GI bleed. She needed 28 transfusions in one week...finally, she could come home again under close monitoring. Still having hope.
Another week and a half later, she ended up back in the hospital...this time with a GI bleed that was worse. A week and a half of countless blood transfusions, her body was not stabilizing. Her oncologist came in to tell her the fight was over...that she would die sometime that week. They were going to stop the transfusions that were keeping her alive...the cancer had taken over.
The oncologist asked her to pick which day the transfusions would stop...Raine refused to give him an answer. A rock solid hope that never once faltered. God's gift to her.
God took her home the next day...Raine fought for life, for breath, until the very end. Only the last few minutes, of her time on earth did her breathing become quiet and calm. And I believe that's because she could see that light that called her home. Her hope led her there.
True hope does not falter in the face of adversity or pain. It does not live or die depending on what happens in this world. Raine knew that. She lived through her terminal cancer journey with a solid hope for a better tomorrow.
At the very end of her journey, hope won. Not the fleeting hope that lives or dies in this world...but the true hope that lives and goes on forever in the next.
She believed she would be alright...and she always was...and she still is.
If I were to pass on words that Raine would want to share with other people, whether they were battling cancer or not...I know she would say this because this was how she lived. She would say...enjoy life, laugh a lot, choose happy people, places and things, don't worry, live for today, stay positive, be strong, look for humor in everything, be bold, don't put up with crap, eat what you want, hang out with whoever you choose, laugh out loud, say what you need to, have fun, lead not follow, make others laugh, know when you look good and take a selfie, be silly when it hits you, walk tall and proud, notice beauty in the world and capture it so you always remember, enjoy and value your family and friends, help people and causes you care about and believe in, hope for a better tomorrow, seldom get angry...its not worth it, fight for life...it is worth it.
For all the cancer warriors out there, I quote S.C. Lourie..."Tell me your story and I will show you your bravery. Show me your scars and I will tell you of your beauty. Share with me your suffering and I will applaud your resilience. Confide in me your fears and I will honor your strength. You have it all inside you and your brilliance shows when you least imagine it. Don't forsake anything about your soul, your body, your mind, your heart. It is both the light and the dark that make this world beautiful. Same with you, lovely one. Same with you."
And for the rest of us...let's come together and fight this. Raine was quoted as saying "Cancer is lonely and it comes with a wide array of feelings and emotions nothing else compares to. To have such a beautiful connection made through something as evil as cancer has taught me that love and support always triumphs." Raine was speaking about the cancer warriors who came along side her during her battle. If they can stand together...then so can we. We fight the battles we can fight...matters of life and death have never been in our hands. We fight on the battlefields of love and compassion...we fight with our hope and our prayers. We fight and we do not stop...because there are so many that fall. And we wait for the day when we will see cancer's great wall of pain and suffering fall...and we do it together.
Written by Rhonda Misanchuk