Carrying a Time Bomb
Most people wonder what will eventually claim their life. We navigate this life as a young person never really thinking about it, until we wake up and realize that we are ¾ of the way through our journey. Usually it smacks us in the face when we start to see others our age, or younger begin to leave their earthly bodies for whatever afterlife there is out there in this cosmos. Some cling to the vision that Heaven awaits us.
One by one we watch people who we have known die, and with each death the grim realization of our own mortality simmers deep inside of us. Some people are able to ignore the ragged voice of the Grim Reaper’s reminder and run quickly in the opposite direction….all the while laughing and yelling ‘Fuck You….I’m not going anywhere!’ These are the people who look like they have life by the balls, and may be what most others consider risk takers, living their lives with complete abandon, never wasting a moment of time. They are spontaneous beings, and would be the personality who would call you in the middle of the night to say, ‘Pack your bags, and meet me at the airport at 0430 — -we’re flying to Fiji!’
On July 27, I had a MRCP — -the first MRI for pancreatic cancer surveillance that was done prior to my telehealth consultation with Dr. Michael Goggins with Johns Hopkins. This has been a process starting in December when I was notified that members of my family have ATM (Ataxia-Telangiesctasia Mutation) that has a higher incidence of developing Breast, Colon, Pancreatic, Prostate and Melanoma Cancers. Genetic testing identified that my brother, my sister, and my sister’s two daughters have the mutation. I learned that I have it as well. My mother survived pancreatic and breast cancer. Her sister survived colon and breast cancer. My sister developed breast cancer at age 41, and is a 15 year survivor. She is the fourth generation of women who have had breast cancer. In addition, one of my father’s sisters died at 37 of gastric and pancreatic cancer. ATM is autosomal dominant — a child has a 50% chance of having the mutation with a parent who has it. Our children all need testing, so they can monitor their future.
Until now, I’ve kept the results of that telehealth visit deeply buried in my gut. The day of the visit, the video only worked on his end. I couldn’t see him but I could hear his voice. From the moment he began speaking, he was apologetic to a fault, and I immediately sensed there was news he had to deliver that would make this type of visit more uncomfortable than it was. If you randomly scanned 100 people, 5% would have cysts in their pancreas. In people with ATM, they find 40% have cysts.
I am one of the 40%.
When he delivered that news, he saw my reaction and began apologizing again for having to deliver news in this way. The evidence of these cysts are all the more reason that I will have a yearly MRI for the rest of my life. I will also have breast MRI, alternated with mammograms on an every 6 month cycle. It isn’t so much a concern about the amount of cysts, it is about watching to see if they increase in size or change into a solid mass. In six months I will travel again to a Johns Hopkins radiology facility to have a follow up CT. My siblings who tested positive will follow up with their own in person consultations starting in September.
In much of my professional life, I worked in radiology where I assisted in CT guided biopsies of pancreatic cysts and masses. I’ve assisted in probably hundreds of breast biopsies, both ultrasound guided and MRI guided. I know what is involved. I’ve looked at terror in countless faces of what may lie ahead for patients as they move through the process. I’ve held so many hands that I’ve certainly lost count.
When I had genetic testing, I had convinced myself that I did not have the mutation, but I was wrong. The realization of what I face in my future hit me like a steamroller. On top of the current Covid isolation, I’ve had profound moments of despair. Somehow, I’ve managed to keep moving. Part of my ‘keep it moving’ philosophy has been for my children and husband (and cats!). I learned a long time ago to lead by example, but inside I’ve felt fractured and disconnected.
I had cancer before in 2012. It shook me to the core, and it took me a few years to get my head and heart in sync to finally believe that it wasn’t going to kill me. Unfortunately, those feelings have resurfaced. A bout with skin cancer on my face last fall with topical chemotherapy made my thinning hair worse, but it finally started to fill back in.
Three weeks ago I went for my six month follow up with the dermatologist. She has been measuring a small freckle on my nose near my eye for about a year. The size has increased and she did a biopsy. Again, I have Squamous Cell skin cancer, and again, I need to use topical chemotherapy. This time, it’s so close to my eye.
The brother and sister who have the ATM mutation have also had bouts of the same skin cancer. My sister has had two wide resections of her lower lip. The literature says that we have an increased sensitivity to sunlight and radiation. We lived at the swimming pool as children. There was no sun block.
I worked for years in an environment where I wore lead aprons to protect my chest, abdomen, and thyroid, but my arms, face and eyes were exposed. Physicians in interventional radiology wear special glasses during procedures to shield their eyes, but most of the other people in the room do not. It isn’t standard operating procedure.
One of my favorite Jackson Browne songs is ‘The Fuse’…..
‘Whatever it is you might think you have
You have nothing to lose
Through every dead and living thing
Time runs like a fuse
And the fuse is burning
And the earth is turning….’
We all have a fuse.
We don’t know when or how the fuse will be extinguished.
Time is all we have.
What we know about ATM is that as a person ages, their chances of developing cancer increases. The chances of developing breast cancer by age 80 is estimated to be 60%. The risk of the other cancers increases as well.
And so, I can only describe this feeling as if I am carrying a time bomb.
I can’t see the face of the clock ticking on the imaginary bomb that has a grip on my DNA.
I don’t know if the bomb has invaded my fuse.
If I’m lucky, perhaps the odds are in my favor and that the fuse is totally separate from the time bomb.
Added to these thoughts and feelings are 44 years of working in a field where I have seen what that time bomb can do when it explodes. I know the ending of countless human beings, as I have witnessed it first hand.
Remember, I’ve held so many hands to comfort the sick and dying, that I’ve lost count.
Whatever my fate may be, I only hope that there is a decent, devoted, caring nurse holding my hand when I ease on down the road to the cosmos.
I hope.
I hope for my future…..
Live your life with abandon.
Perhaps I will call you in the middle of the night in the future to pack your bags….and we’ll go to Fiji….
