A quick note: John is now a professional speaker, sharing his journey through and after cancer with groups of all types. To contact him or learn more, head HERE.
Cancer has been a part of everyone’s life. But, like most of you, I’d assume, I have no first-hand experience with Cancer.
However, being near someone, especially someone young, who has dealt with cancer and who has survived, I’ve stumbled upon an important truth.
Of course, each person, each diagnosis, and each journey is different.
While my brother was sick, and he was quite sick, we saw being cancer-free as the end of the road.
That once he beat cancer it would be back to life as usual.
But, it’s been 5 years now.
And we are all still coming to terms with the fact that the journey is not over–and John will never be able to be who he was before cancer.
In fact, what has followed cancer has been harder than the actual illness.
It was the summer after his sophomore year of college.
Suddenly his vision was screwy and he was incredibly tired.
Being the, ah, less than empathetic older sister, I slapped him on the back of the head and told him to stop being so lazy.
And then they found the tumor, on Father’s Day. At the time he was only 20.
What followed was a blur of different hospital rooms, doctors, and opinions.
It took weeks to diagnose and they were only able to diagnose this tumor as Primary Central Nervous System Lymphoma after a devastating biopsy my brother is still dealing with the physical side-effects of today.
After the diagnosis came treatments–aggressive Chemo that didn’t work.
Another Chemo.
Full brain radiation and finally stem-cell replacement chemo.
People set up 24-hour prayer chains for him.
He was the first intention for anyone that knew him, or knew one of us, here and around the world.
He traveled to Lourdes, France to bathe in the waters Our Lady showed to St. Bernadette.
He was anointed and blessed and kissed and held tight.
Cancer took a year of his life, his hair, his athleticism, but it didn’t take his life.
And, after standing at the brink and facing death, this 20-year-old college sophomore found God, found his faith, and surrendered.
He beat cancer and he had found God!
The scans were clean and, we all thought, we would have our old John back–the only change was that he was now in love with the Lord.
But that’s not quite how it went.
And we were all surprised.
After all, he lived. He lived when so many others, just as sick as he was, didn’t.
For all of us that had stood near him and watched him battle cancer, we couldn’t help saying, “You survived! You’re alive–what are you going to do now?”
It’s funny how that didn’t, at the time, sound like a loaded, heavy question.
No pressure.
Just a few months after he was given the all-clear my brother returned to college and finished his degree.
All the while feeling that year he’d lost and the friends that had moved on without him.
And he graduated.
But, then what?
A year in the seminary.
A few months at a job in a small town.
A few months selling trucks.
And learning to accept the John after cancer.
In recent months he has made some important changes.
For which I am very of him, and I really hope and pray that peace, understanding, and acceptance are just around the corner for him.
I really pray that soon we can look at this cancer journey as over.
But, chances are the ghost of cancer will continue to haunt my brother.
All of this–the illness and the aftermath–is my brother’s story and something only he has a right to tell.
Anyone who has even been close to someone who survived a major illness has to agree with me.
The prayers and support and love should not end when the illness disappears.
To be honest I am writing this post as much to myself as I am to the world at large.
I, very likely, have put more pressure on my brother to move on.
Get over it and let go of cancer than anyone else.
When you love someone as much as you love a spouse or a sibling there is a piece of you that is broken when they are hurting.
Maybe it’s because he’s my little brother, my only brother, and the product of 4 older sisters.
But John has always been our golden boy.
He is young enough that I remember when he was born.
I remember giving him bottles and teaching him to walk and talk and smile.
Even then, he seemed golden.
But after cancer that has changed.
The weight of what he experienced and lost when he was sick is visible in my brother.
That shiny silliness I knew as my brother is not quite there anymore.
At times I’ve found it easier to pull away from my brother in these post-cancer years.
This boy I adored so much as a kid that I willingly shared a room with him was just not quite what we all remembered.
It was easier, even for me, to just not deal with it.
But this was a mistake. And quite selfish.
I am trying very hard right now to make a change in my relationship with my brother.
To re-invest in him, and to get to know who he is now because old John is gone.
He’s just gone.
We all change and mature over time, it just happened for him all in one terrible year.
If there is a person in your life walking the difficult path after cancer, or any major illness, please reach out to them and cut the pressure.
Things like survivor’s remorse are real.
I know it doesn’t make sense that someone would suffer from depression after beating an illness (they should be elated, right?) but they do and if you cool it the expectations, it’s easy to see why.
Thank God my brother survived.
I can’t imagine the grief I would be swimming in, even 5 years later, if my brother hadn’t come out on the other end of this. I can’t even go there.
He is alive.
And I am determined to celebrate his life, his new life, with him, instead of mourning the old John that cancer took.
I survived meningitis six years ago this summer. My daughter reminds me that I’m actually six years old, because my body and brain did a reset in 2011. To be honest probably the hardest thing for me has been how our family and friends act as if I should be all better now, and want never to have to acknowledge any difference or talk about what happened. It’s like they think my illness and our descent into poverty was cute for a few months, but they are now over it. It’s hard to watch my children have nobody other than each other who cares what they went through watching me deal with all this.
Anyway, God bless you and your family, and every family who has to face chronic illness. May our suffering sanctify us.
Nancy, Mourning what cancer took from us is a very real thing. It’s ok and it’s something you, your family and your brother will need to do.
I discovered a lump in my throat in May 2004 and didn’t seek any Dr appts until that November. The week after Christmas we got the biopsy results: thyroid cancer. I was an eager little 26 yr old with plans to go to the presidential inauguration in Jan 2005, I didn’t have time for Cancer! I went to DC knowing what that lump was, showing it to my friends. Feb 2005 surgery, March 2005 radiation. No Chemo, thank the Lord. But now, forever dependent on supplemental thyroid hormone and constant blood tests to make sure it’s the right level. Also a vibrantly bright red scar on my throat that took exceedingly long and a few shots of cortizone to fade due to keloid scarring. A full body scan the following year that required me going off my synthroid and getting extremely hypothyroid (lethargic). As my metabolism slowed to a super crawl it was a constant reminder as to how dependent I was on medication to live. The scan was all clear. I tried to live like normal. Moved to another town, met a great young man. Long about spring of 2008 I realized something was really wrong. Every time I had to get a blood test it meant opening the door in my head behind which I had placed EVERYTHING that had to do with my surgery. When I first shut that door it was just a little storm, but when I opened it back up there was a hurricane inside! All that stuff that I didn’t want to deal with was festering. I was an emotional mess. I finally went to our parish priest for confession and blurted out something about it. His words were, “Grief is a quantity, you have to get it all out.”
You can’t refuse to mourn something that you have validly lost. I lost an organ. I lost the notion that I was basically a healthy person. I lost the life I could have lived without being dependent on a DAILY FREAKING REMINDER of what had happened. Once I faced up to that and allowed myself to truly, physically and mentally grieve, things got better. Your brother and I are never going to be people who didn’t have cancer. We have to relive many aspects of that period of our life with every Dr. visit, every blood test, each glance at our scar in the mirror, and yes, with each bit of medicine that we take now as a result of our life saving surgeries and treatments. We are living. It is a different life.
The best book I found at the time, and the one I recommend to both cancer patients and their loved ones is “There’s No Place Like Hope” by Vickie Girard. She perfectly captures the thoughts and feelings of the patient in a way that the caregiver (or sisters) can better understand what the patient might not be able to articulate. Another book I absolutely love is “Never Give Up; My Life and God’s Mercy” by John Janaro. He’s a Catholic theologian and the book is about dealing with invisible illnesses (depression, anxiety, and other physical ailments) but it’s more about how we suffer. Janaro is steeped in St. Pope JPII’s philosophy of uniting our suffering with Christ and giving purpose to our suffering.
It’s ok to cry, Nancy. It’s ok to mourn the brother you lost. It doesn’t mean you love him any less. It doesn’t mean God loves you any less for being unappreciative of what you have. Grief is a quantity, if you don’t get it all out it will fester. Open the door, let the storm out, you’ll have peace when it’s gone.
Emily–I am so touched and honored that you took the time to share all of this here. How amazing that you also went through cancer at such a young age and you so clearly know what it is like to loose part of yourself to cancer.
I will be sure to tell my brother all of these things, especially those book recommendations. In fact, I just ordered that book by Janaro on Amazon for myself because, seriously, who isn’t suffering from some sort of invisible illness!
Thank you for understanding and being so open. I am quite touched.
You will LOVE Janaro’s book. I read it right after I took an Endow series studying JPII’s encyclical “on the meaning of suffering.” It was amazing. Without actually mentioning JPII’s encyclical, Janaro still conveyed the meaning of it. We read the Janaro book in a Catholic book club and we were able to skype with John Janaro at our meeting!!! So I asked him why he didn’t mention the encyclical. He said he was just so steeped in JPII he didn’t think of it. It’s really great. When you are soaked up in theology, it pours out.
I think of this book so often for YOU, Nancy. I see so much of myself in your experiences. Particularly the having kids close together kind of stress and anxiety that happens. Everyone’s experience is different, so I’m not going to try to solve your problems for you. But John’s book and the Endow series came at an amazing time for me. I had such a dark and horrible time of anxiety after my third was born (in less than 3 years). Prozac and therapy healed me. John’s book is WONDERFUL validation of how we are BOTH body and soul and that quite often we need BOTH prayer AND medicine to heal ourselves. Some people can pray themselves out of mental illness and I applaud them for it. But it’s not a failure if you can’t.
Love you, girl! Between your Catholocism, kids and cross-stitch, (I don’t mean to sound creepy) but I think we’d be great friends if met.
You don’t sound creepy! I really do think we would get along famously if we met too! I am hoping that the book arrives before we head out on vacation so I can soak it up. And that is amazing that you got to skype with the author. so cool!
Amen about some just not being able to pray out of a mental illness. I take Prozac every day and I am just so grateful for it (as is my husband)!. I am nothing without prayer, but I need my little pill too.
I’ll keep you posted on the book–I’m sure I’ll end up writing about it ;)!