Surviving, Supporting, and Living Life in the Shadows of Esophageal and Kidney Cancer
In Stark contrast.
The moment your entire world stops turning...
17 years ago on November 11, 2000, I woke to a dark, overcast, rainy morning wondering how in the world we would ever make it through this day, never mind this daunting journey. As I prepared to take my frail 39 year old husband of just 2 years to Yale New Haven hospital for an 8 hour surgery to remove his esophagus, saving his life from the cancer that threatened to steal him away. I prayed to God to please spare his life, I prayed for my little one year old boy sitting in his highchair, singing and smiling away, unaware of the dark clouds looming on the horizon. I cried for my unborn daughter kicking in my belly. Not knowing what kind of world she would be coming into in just a few short months. I was so overcome with stress and emotion that I actually passed out on my kitchen floor as my son was in his highchair eating his breakfast!
Once I woke, I made sure I was ok and the baby was fine, I prepared myself to be strong for my little family, I would not accept anything but a positive outcome. I had no choice but to be strong and positive for them. Whatever this day held, we would all get through it together. I stood alone in that waiting room...as the clock ticked by...watching all of the families waiting for their loved ones come and go....I still waited alone....and prayed. Not letting tears fall once until I locked myself in a bathroom stall and they came pouring out like a faucet.
By the grace of God and one hell of a fight, he did survive. My husband had a 3% chance of surviving esophageal cancer and not only did he survive but he defied the odds. He had never smoked or drank a day in his life and was an avid exerciser, which we’re told helped immensely.
We indeed had so much to be thankful for that year as the holidays took on a greater meaning. When friends came with dinners, hugs and words of support and encouragement. Even Thanksgiving dinner was brought to our doorstep complete with all the fixings!
The next 5 years were an even greater struggle with infections and side effects from months of painful chemo/radiation. Dealing with a newborn, a 22 month old, a new home, no family to lean on and a sick husband had my head spinning and my emotions all over the map. Today I can look back and embrace what was with a smile and a true sense of empowerment. When people ask me how I do what I do now, how I find the energy and am seemingly always doing new and exciting things. I can only tell them that once you've lived through something like this you are forever changed. You never take a single moment for granted. You wake up every day just thankful fo even the smallest things, like being able to walk outside and feel the sunshine on your face. You truly DO live like you were dying...EVERY. SINGLE. DAY.
Esophageal Cancer Statistics
- Key Statistics for Esophageal Cancer
The American Cancer Society’s most recent estimates for esophageal cancer in the United States are for 2009:
A daughter and a new lease on life...
In March, 2001 we welcomed our little ray of sunshine into the world. Emma was a bright shining light in the middle of some of our darkest days. No matter what uphill challenges we faced throughout the prior 6 months, we always held onto the fact that she would soon arrive. A fresh, new beginning for everyone and a clean bill of health for Steven.
Life moves forward....
Life moved on, months and years passed, not without plenty of ups, downs and numerous sleepless nights filled with unknowns and prayers just to make it through. There were many days Steve would finish eating dinner, then spend hours in the bathroom getting sick. In the back of my mind, I can still see our little two year old son laying on the hallway floor with his trains, just outside the door waiting for his daddy to come out and play. It broke my heart to see him there waiting so patiently. At 2 years old, unaware of the severity and fragility of his precious fathers life during those moments.
Steves stomach was never the same after his surgery, his body would never operate as it had in the past. He had his entire esophagus removed, his stomach was stretched up to the back of his throat. This surgery "created" a new esophagus with his stomach functioning as both. He no longer has the "flap" we all take for granted. The one that keeps food down after eating. He also has issues with food getting "stuck" in his throat, this always sends us in a complete panic! There were, and still are nights where he's had to sleep sitting up as food would rise up his throat into his mouth as he slept. He'd wake up choking and gagging trying to get the food to go down and keep himself calm. I would of course wake up as well, scared to death I was going to lose him once again.
Through the years we've learned to live with these side effects in exchange for the gift of LIFE. Steve has always had such a positive attitude and knows he is one of a few survivors of this disease. He doesn't let a day pass where he doesn't pay it forward in some way. Every day getting up and feeling thankful for the simple gift of getting out of bed on his own and having his beautiful family by his side.
Always in the back of both of our minds was the thought of "what's going to happen next?" Once you are diagnosed with cancer, it's never far from your mind. Every hospital visit, every MRI, every CAT scan that comes around you find yourself back in that same place of fear and unknown. Holding your breath until you get the "all clear" from the doctors. Then life moves forward yet again and for a while you are at peace.
Living life in the shadows...
Throughout the last 17 years, Steven and I and both our children have always kept a positive attitude about life. We never let a birthday go by without celebrating each other. Our daughter decided one year when she was about ten, to write a list for my birthday,of ten things she loved about me. It was the most touching thing she had ever done. Since then, we make a point of EVERYONE writing a similar list whenever it's one of our birthdays. We cherish the little things we have in this life together as a family. We've built a little cocoon around the 4 of us that's a true comfort to come home to after a long day. Our children know how quickly someone can be taken away and are better for it. They don't take a single moment for granted. As we've gone about our life, we just try to live each day to the fullest. To love those that matter to us and to not take everything so seriously. In the end, you only have one life and none of us know how long that life will be. Don't wait to live it. Each anniversary of his surgery, we stop and take a moment to reflect on how far we've come from those 1st few years of unknowns and fear. We stop and appreciate the life and love we share, the family we have, our health. Every year we get a little more sure we're in the clear....
The other shoe drops..
In October of 2016, the other shoe finally dropped and our hearts sunk. As we headed into Steve's sixteenth year of being cancer free, he suddenly is admitted to the ER with chest pains. While there, a chest x-ray was taken and a mass was noticed, totally unrelated to the chest pains. When we heard the word "mass" of course we we're frightened as it took us right back to that awful place so many years ago. What? How in the world could this be happening again? We tried to suppress the uneasy feelings as much as we could, telling ourselves it couldn't happen again. We went a week in limbo, trying not to let panic overtake us.
At that very same time, I had been called back for a biopsy on my left breast! This has never happened to me before, I was scared to death. Having the fear of the unknown on top of what we were about to facedown with Steve’s kidney was just crushing. I prayed to God yet again, “I know you wouldn’t be so cruel Lord...after all we’ve fought through and our two (now teenagers) at home with no family but us.“ That was a harrowing, rollercoaster for about 2 weeks but thankfully came back negative.
As we sat in the surgeons office at Yale New Haven Hospital listening to the surgeon explain the results of Steve’s chest scan and MRI, the words seemed to fall out of his mouth in slow motion. Almost as if the teacher in Charlie Brown was speaking to me. I heard the words but at the same time, I didn't. I looked at my husband, the man who is always so strong and so positive for all those around him and saw tears rolling down his cheeks. My heart broke for him, he just looked so defeated. If you've never heard these words before please count your blessings. When and if you ever DO, your world goes silent as if you're in a bubble cut off from those around you. I immediately went into survival mode yet again. MY coping mechanism as a spouse and caregiver is always to put up a wall of strength, trying not to get emotional. I'm very cut and dry about things during these moments. I looked at Steven and said "OK, we can do this my love. The doctor told us it's totally survivable. Surgery to remove the kidney and you'll be fine."
I am learning now that cancer patients and loved ones sometimes need more support and empathy. They need someone to lean on and someone to listen. They don't always need someone to "fix" things. Sometimes all they need is someone to listen to them and offer a shoulder to cry on and know that it's ok. Sometimes no words are necessary at all. I'm learning to be more like that, it's difficult for me though. Feelings are tough when you've been in survival for most of your adult life.
Thankfully it's very possible to live a healthy life with only one kidney and many people do so, even donating to strangers. Steve has always been extremely healthy all his life.Obviously after all he's been through, he's much more exhausted after a long day as the years have passed.
A month after the mass was found, Steven went in for surgery to remove his left kidney. This time the surgery wasn't nearly as long and I brought along a friend for support. After about 5 hours, we heard back from the surgeon, he had done well and was recovering nicely. He spent a couple weeks in the hospital recovering due to a tear in his lung, a surgical mishap. That made the recovery much longer and much more painful for him. It's now been a little over a year since. In that time he's been back for CAT scans ( he'll probably have to have them for the rest of his life now) and had two skin basal cells removed. He's certainly had his fair share at this point in time! Other then the basal cells, he's gotten good feedback and the cancer has not returned nor shown up somewhere else.
- Kidney cancer - Symptoms and causes - Mayo Clinic
Learn about the diagnosis, symptoms and treatment of kidney cancer, including renal cell carcinoma.
Take the help of friends and family...
This last go round with Steve's kidney cancer, we were surrounded by so much love and support from friends and family. While we don't personally have much family at all, our friends came through for us just like a family would. They organized and brought meals for weeks, they sent care packages, flowers, fruit baskets and even beer towers! (They know me well!) We realized this time around its okay to accept the help. The first time around we were too proud and didn't want to be a burden. Unlike last time with babies, having two teenagers now made it much more difficult to hide things from them. They were well aware of the circumstances and we really had to lay it all out for them so that they could be prepared. We didn't want them to be scared, better to be prepared. Our kids were so wonderful through it all I do have to say. Helping with everything from groceries to snow plowing. They too, accepted help and support from their friends. We've always been givers and are much more comfortable in that position. For us to accept help from others is challenging but also very rewarding. Now we know, it also makes others feel they're helping in some small way. It's a wonderful way for people to show they care when they are feeling helpless. So, make a note...take the help, it's good for everyone!
Welcome home messages from myself, the kids and all our friends!
Keep on keeping on...
So here we are, February 2018. Life continues moving forward no matter what we say or do. We continue to take it moment by moment, day by day and sometimes breath by breath. Enjoying those quiet moments when life feels stress free. Taking a walk in the sunshine and being grateful for it. Spending vacations together, just enjoying each others company. Life will change, of that you can be sure. All you can do is be prepared for anything, take it as it comes and in those moments when everything feels right with the world, live the heck out of them! Just remember to NEVER give up...we absolutely believe there is power in positive thinking! Be well..
- Esophageal Cancer: Symptoms and Signs | Cancer.Net
ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu.People with esophageal cancer may experience the following symptoms or signs. Sometimes, p