For complete story through 2012 see my book, Melanoma Mama: On Life, Death, and Tent Camping at www.melanomamama.com in which I describe how to snatch joy from a cross country, solo tent camping adventure even while the grim reaper vigorously pursues me.
1990 – A mole on back diagnosed as melanoma. Wide excision with clean margins.
2001 – I developed vitiligo, white patches of skin where melanin is not produced (a sign in melanoma patients that the immune system might be fighting a recurrence.) Dermatologist were unaware at that time of the melanoma/vitiligo connection.
2007 – I developed chronic anemia of unknown origin.
2008 – A CT scan revealed grapefruit sized melanoma metastasis in abdomen (successfully operable) and large mass in upper chest (inoperable.) I underwent grueling interluekin-2 (immunotherapy treatments) while hospitalized.
2009 – I underwent radiation on the inoperable chest tumor, which shrank and went dormant, giving me unexpected longevity.
Feb. 2012 – Dizzy spells, disorientation, and unsteady gate landed me in the emergency room. A brain MRI revealed golf ball sized tumor above my frontal lobe, a craniotomy aspirated the tumor. Several months later the hole filled again with melanoma, so a course of ipilimumab (immunotherapy) and targeted gamma knife radiation were done.
Oct. 2012 – Necrotic tissue caused by the (fortunately) dying brain tumor caused life threatening brain swelling, so I underwent a second craniotomy with difficult recovery time from fatigue, but now I am two years recurrence free.
November 2014 – Another brain tumor deep in my right brain was discovered by an MRI scan leading to another targeted gamma knife radiation, leading to necrosis which has caused “tumor fevers” and headaches which we are trying to control with steroids to reduce brain swelling and Tylenol for the fevers which have now subsided with steroid treatment. But a follow up MRI brain scan last week (Feb 2015) shows a new brain tumor at the top of my brain. A course of action will be planned this week.
I have led a fairly good quality of life between bouts of medical madness. I dance, downhill ski, hike, ride a bicycle, play guitar, write, and have many supportive friends for socializing. At the same time as the gamma knife radiation in December 2014, I had sold my home of 40 years and needed (and received) lots of help downsizing to an apartment, but unpacking at my new place has been slowed by fevers and headaches and now this new diagnosis of another brain tumor leaves me in emotional limbo yet again.
I am in the process of publishing another book (this one a compilation with commentary of a combat medic’s 1968 letters home from Vietnam), and I want to give Doc Jackson’s Letters Home to the world before I die, but do not yet have a publisher, so plan to at least self-publish it as an ebook.
I enter journal entries of my health saga at the publicly accessible www.caringbridge.org/visit/melanomamama. You must sign up with a password, but I have authorized the public to read this.