April 2013 - My youngest child David was attending college at the University of Alaska in Anchorage and working full time for Best Buy when he called to tell me that the pneumonia they had been treating him for “probably wasn’t pneumonia.” When I asked what they thought it might be (fearing tuberculosis) his voice cracked as he said “cancer.”
My heart dropped, my mind raced, and instantly I thought of many reasons why there was no way this could be true. From there proceeded many tests, emergency flights to Anchorage, the aid of a wonderful Oncology Advocate (her background is pathology) and then the diagnosis of Stage 4 Colorectal Cancer. It had metastasized to the liver and the lungs. From there “The Journey” began.
January 2013 – My father was diagnosed with Colorectal Cancer, they were able to remove the cancer via resection and he is doing well.
May 24th 2014 – the same day we held our son's Celebration of Life service, my Uncle Joe was diagnosed with stage IV colorectal cancer. He is still fighting it, but at the age of 77 it’s a tough battle.
Challenges, Lessons Learned, and Questions Unanswered
Challenges – dealing with shock, while trying to lift the spirits of my 26 year old son, while trying to stay positive myself, while trying to deal with insurances, hospitals, specialists, family, friends, and above all, making the right decisions. I guess I would call this information overload, but every bit of it was necessary--and all in a very compressed time frame.
Lessons – An oncology advocate is worth more than gold. We had a guide through the horrendous maze of decisions. Our guide made sure all the right tests were taken in the right order, got second opinions when necessary, and got oncology group A to be willing to actually talk to second opinion specialist B.
Her guidance was incredibly invaluable. Without her, I don’t know that a KRAS or BRAF test would have been conducted, which we relied on later in David’s treatment. There is comfort in seperating battles that could be fought from those around which our hands were tied.
Unanswered questions - Would more frequent testing have made a material difference? If testing were easier, would my son have been more prone to be tested more often?
Did this cancer “explode overnight” (per se) or did it develop slowly and therefore might have been caught in earlier more treatable stages? (And yes, I beat myself every…single…day over this regardless of all the kind words people have said to me.)
How can we make testing so simple and so thorough that it becomes as commonly administered as the old CHEM-7 panel?
David > cancer
Wow…where to begin? Love. David has one biological brother (my other son Jeff), and two step siblings, Marc and Kristy. David was four yearls old and Jeff was seven when Marc and Kristy joined our lives. They were 17 and 12 respectively. The entire family has bonded wonderfully throughout the years.
When David’s brothers and sister found out about this diagnosis they were desperate to find a way to show their love and support for David during the battle he was undergoing.
Matters were complicated in that during that same time the diagnosis and final test results were coming in, my husband and I were in the process of moving from our family home where the kids grew up in Southern California to our new home in Northwestern Nevada.
Additionally, I had just started a new consulting career and was traveling out of state five days a week and Jeff had literally begun a new job the week we moved. Stress was high everywhere.
Marc and Kristy got together to think about what they could do particularly since we were now all living in three different states (David in Alaska, Ralph and I in Nevada, Marc in the bay area of California, and Kristy and Jeff still in southern California).
Marc works for The North Face. Jansport is part of the North Face family and one of their key designers is a good friend of Marc’s. He contacted him about the idea of getting tshirts for the entire family and any friends that might want them.
His buddy suggested the “David > cancer” logo. Marc randomly picked royal blue for the color (not knowing this is the color for colorectal cancer). Jansport, bless their hearts, stopped their normal production runs not once, but twice to produce these shirts. Kristy and her husband then spent hours getting them all sent out to family and friends that she had secretly contacted.
Late one night, while watching David sleep and counting his breathing rate (looking for signs of improvement) I was on Facebook and came across this picture. I was shocked and thought, “How wonderful! Kristy had a shirt made for herself to support David.”
Little did we know that this would be the first of hundreds of pictures to come to David. Entire families at gatherings, friends on top of mountains, relatives in Australia, on the strip in Las Vegas, friends from everywhere sent pictures.
And the pictures were incredible moral boosters not just for David but for all of his loved ones. The pictures continued throughout his entire journey and even every now again still, someone will post a picture saying, “I miss you buddy” or “Thinking of you David.”
So the goal was to make David feel loved and supported and oh my did they ever achieve that! These Facebook posts also increased awareness that colon cancer does not just affect the elderly. Another goal was to make sure that everyone knew that David is, and always will be, greater than cancer!
Current Disease Awareness Efforts
First, this last year I put together a “David > cancer” team to participate in our local Relay for Life event. We are a small community here in Carson Valley, but our team in just three weeks raised a little over $3,000.
Second, David was a photographer and even while fighting cancer, working full time he was also starting up his professional photography business. His work is amazing and he had multiple offers come in to take him on full time as a nature and portrait photographer. A local TV station in Anchorage was also in the midst of working out a contract with him.
I have just begun selling some of his photography with all of the profits currently going to American Cancer Society.
Third, my niece Sarah Palenske is a cousin of David’s in Alaska. They roomed together for a while. Sarah was actually working for a team of gastroenterologists at the time of David’s diagnosis, and when David was diagnosed it tore her up. But being quite the determined young lady, she started a business.
In many states there are running clubs called “We Run XX” (XX being the state name). Sarah licensed the “We Run AK” name. A friend created the logo, and she now sells t-shirts, hoodies, in various running stores in the greater Anchorage area. A portion of the profits will go directly to families fighting cancer. A recent newscast covered the story on her initiative.
Finally, I’m staying in touch with our oncology advocate in case there is any way in which I can help her out.
Importance of Disease Education
It is important for people to be educated about colon cancer, available prevention methods, and colon-related diseases like colitis because someday we are going to unravel this mystery. We are going to better understand the genetics behind this and the lifestyle choices that might impact it.
If only David’s had been caught early enough he would still be here with us today marveling us all with the gift of his beautiful photography, his warm smile, and his caring heart.
Advice for Young People Battling Colon Cancer
Use every single resource available to you! DO NOT GIVE UP! Just because David didn’t get the outcome we hoped for doesn’t mean the next person won’t. There are teams of people out there working every day to discover better ways to diagnose early, better ways to treat people when they are diagnosed. We WILL someday beat this thing!!
David sent everyone a message via facebook back in February in which he made two points:
- “I want to inspire people. I want someone to look at me and say “because of you I didn’t give up.”
- “Turn off your TV’s, put down your cell phones. Don’t just watch life go by, be ENGAGED with life!”