Part 1-Hurricane Lane was fast approaching the Hawaiian Islands. Our married son, who lives with his young family in Oahu, Face Timed us to give an update on their preparation for the storm. Our eight-year-old grandson bounded into the screen’s view for a moment. I asked him if he was going to write in his journal about the hurricane. He shrugged his shoulders.
l gave him a suggestion, “Why don’t you write in your journal today about what you think the hurricane might be like, and then after the storm passes write again in your journal what it was really like. It might be neat to compare the two entries later.”
He smiled, said “OK” and zoomed out of camera view again.
Within days, the hurricane slowed and turned in a westerly direction towards the open ocean. Authorities said that the worst of the storm was over, but warned that rain would continue through the week bringing possible flooding or landslides.
I have been on a personal “hurricane watch” for about six months now. It began when I learned that I had a lesion that needed to be removed. In March 2018, I had the surgery and more biopsies. The lesion turned out to be cancerous. The biopsies showed a very rare skin disease. This made me want to laugh mirthlessly in a black humor sort of way. I’ve had several other odd medical things in my past. Now, to have one more was just, well, ridiculous. It is natural to assume that there should be some sort of “cap” on the number of challenges one has in life. But, here we are in reality.
My journal suggestion to my grandson was a good one to apply to myself, I realized. It can be useful to look back on life experiences and view them from a different perspective, to contemplate the things learned or understood. If I asked an eight-year old to do it, can I ask myself to journal my approaching medical “hurricane” as well? Will it be a full blown, high-grade cyclone or will it instead slow down to intense rains and possible flooding, metaphorically, in my life?
Here I am giving public journaling a try. I’m offering this personal view to you because somewhere out there is another person who has this same diagnosis, or someone facing a large “unknown” of another type in their future. I think writing about this will help me. And, maybe even you…I don’t want you to feel isolated in your own storm watch. Maybe like Hurricane Lane, which later was demoted to Tropical Storm Lane, my outcome won’t be as intense as it seems as I look ahead today.
My rare disease-- EMPD, which is Extra-mammary Paget’s Disease. It is usually found in the perianal area of the body. There are two other forms of Paget’s disease. I have the least deadly of the three. At least, I’m pretty sure it’s the “least”… not much is known about my version of the disease. One eminent oncologist told me that in about the last seven years he has treated only five patients with EMPD. Happily, there is a private facebook group made of people diagnosed with EMPD, thanks to the group’s founder Steve Schroeder. Steve also has an informative blog at https://www.myempd.com
My approaching surgery, my imagined “hurricane”-- EMPD is often treated with surgery to prevent recurrence. I will have two, yes TWO, surgical procedures. Both will be in Seattle and will involve four very skilled surgeons. I am lucky to have them as a team. Day one will be September 11, 2018 and Day two—September 12th. Because the second surgery will require a skin graft to cover the large surgical wound created by removing diseased areas, I will be recovering at home for about four weeks I was told. I will need to not move around too much, and not shower, and as one nurse said, "You definitely don't want to become constipated." (...perianal area, stitches everywhere...yikes!)
Check in again for more details.