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  • MelanomaMama's Avatar

    MelanomaMama posted an update

    Here are Melanoma Mama's instructions on how to pass the day of a first infusion in a course of new immunotherapy infusions when a normal person would have trepidation about side effects, effectiveness, and possible allergic reactions. As you are well aware, Melanoma Mama is not a normal person, so here's what I did.
    Awoke clearheaded and cheerful, and savored pink light in the eastern sky. Heard a voice in head shouting, "Alleluiah!" Realized promptly this was not a host of heavenly angels singing Handel. This was the voice of the funk master, Bootsy Collins "stretching out in a rubber band, spreading funk all across the land" (and across the acreage of my bouncing XXX.)
    Arise at seven a.m., and put Bootsy Collins on my RECORD PLAYER at a volume to which I can dance while not getting evicted from apartment. Get my first true immunotherapy infusion of the day when I hear and dance along to, "Alleluia! Oh glory be! This is Caspar calling short distance, baby. I'm Casper, the holy ghost. Not the friendly ghost, coming to you with a friendly boo."
    My guitar is right there, and I crave to plug it into my amp and chunk along with the funk chords, but that WOULD get me evicted. I learned those chunky funky chords from the Honorable Judge Rick Roll, Tillamook County's good judge (and my law school pal) who replaced the bad judge that I so gleefully ran out of the county on a rail. So it is my guitar teacher Rick who is guilty of unleashing my terrifying Cookie Connors rock persona on an unsuspecting public.
    Meds, breakfast, and brief morning nap. Greet the ever vigilant sis Cathy who has agreed to accompany me today for the duration. Blood test, medical consultation, plus infusion take ridiculously long time, but the infusion itself was without side effects or allergic reactions, so now my reinforced helper T-cells are on the march. That march takes place gradually over the course of a year of treatments of anti-PD-1 every three weeks. Periodic brain scans will reveal effectiveness.
    This treatment takes time to do its work, and there are no guarantees it will work, so I'm not out of the woods yet. I worry about the race between the growing tumors (3 in brain) and the T cells that would shrink those tumors, but I have lived before for lengthy times with still untreated melanoma inside me, so as long as my tumors don't start tap dancing on a part of the brain I actually need, I have replaced my glumness with, not quite giddiness, but certainly sweet relief that I have a chance.
    The giddiness today is real on the subject of the publication within weeks of our ebook and also print on demand book: Doc Jackson's Letters Home: A Combat Medic's 1968 letters from Vietnam. Yesterday I had enough of my brain cells working to contract with the same professionals who so promptly shepherded my Melanoma Mama book (www.melanomamama.com) through the publishing process following my first brain surgery in 2012. They are the husband/wife team of Joel and F.I. at Publish Your Words, http://www.publishyourwords.com/whoweare.php ] , friends of mine for years from Portland's writing circles. I can most highly recommend them, but not right now. Let them finish my project first.
    Back to my Bootsy Collins immunotherapy infusion. If you read this and do not go directly to this You Tube video of Stretchin' Out in Rubber Band, https://www.youtube.com/watch?v=2Sh9cezHNec, and even if you go there but you remain seated while listening to it, you will get severe punishment from the irate Melanoma Mama, aka Cookie Connors. So, Alleluia and glory be! The funk's on me!

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    MelanomaMama wrote on melanomamama's wall

    Here's the update following my first day of immunotherapy infusion of the newly (September 2015) FDA approved Keytruda, aka anti-PD-1 after a brain scan revealed that I had hatched two new brain tumors in addition to the one that was gamma knifed in December. In 2012 I also had two surgeries, one gamma knife and one course of the immunotherapy ipilimumab (Yervoy) to my first brain tumor. But I'm still here! www.melanomamama.com.

    Here are Melanoma Mama's instructions on how to pass the day of a first infusion in a course of new immunotherapy infusions when a normal person would have trepidation about side effects, effectiveness, and possible allergic reactions. As you are well aware, Melanoma Mama is not a normal person, so here's what I did.
    Awoke clearheaded and cheerful, and savored pink light in the eastern sky. Heard a voice in head shouting, "Alleluiah!" Realized promptly this was not a host of heavenly angels singing Handel. This was the voice of the funk master, Bootsy Collins "stretching out in a rubber band, spreading funk all across the land" (and across the acreage of my bouncing XXX.)
    Arise at seven a.m., and put Bootsy Collins on my RECORD PLAYER at a volume to which I can dance while not getting evicted from apartment. Get my first true immunotherapy infusion of the day when I hear and dance along to, "Alleluia! Oh glory be! This is Caspar calling short distance, baby. I'm Casper, the holy ghost. Not the friendly ghost, coming to you with a friendly boo."
    My guitar is right there, and I crave to plug it into my amp and chunk along with the funk chords, but that WOULD get me evicted. I learned those chunky funky chords from the Honorable Judge Rick Roll, Tillamook County's good judge (and my law school pal) who replaced the bad judge that I so gleefully ran out of the county on a rail. So it is my guitar teacher Rick who is guilty of unleashing my terrifying Cookie Connors rock persona on an unsuspecting public.
    Meds, breakfast, and brief morning nap. Greet the ever vigilant sis Cathy who has agreed to accompany me today for the duration. Blood test, medical consultation, plus infusion take ridiculously long time, but the infusion itself was without side effects or allergic reactions, so now my reinforced helper T-cells are on the march. That march takes place gradually over the course of a year of treatments of anti-PD-1 every three weeks. Periodic brain scans will reveal effectiveness.
    This treatment takes time to do its work, and there are no guarantees it will work, so I'm not out of the woods yet. I worry about the race between the growing tumors and the T cells that would shrink those tumors, but I have lived before for lengthy times with still untreated melanoma inside me, so as long as my tumors don't start tap dancing on a part of the brain I actually need, I have replaced my glumness with, not quite giddiness, but certainly sweet relief that I have a chance.
    The giddiness today is real on the subject of the publication within weeks of our ebook and also print on demand book: Doc Jackson's Letters Home: A Combat Medic's 1968 letters from Vietnam. Yesterday I had enough of my brain cells working to contract with the same professionals who so promptly shepherded my Melanoma Mama book (www.melanomamama.com) through the publishing process following my first brain surgery in 2012. They are the husband/wife team of Joel and F.I. at Publish Your Words, http://www.publishyourwords.com/whoweare.php ] , friends of mine for years from Portland's writing circles. I can most highly recommend them, but not right now. Let them finish my project first.
    Back to my Bootsy Collins immunotherapy infusion. If you read this and do not go directly to this You Tube video of Stretchin' Out in Rubber Band, https://www.youtube.com/watch?v=2Sh9cezHNec, and even if you go there but you remain seated while listening to it, you will get severe punishment from the irate Melanoma Mama, aka Cookie Connors. So, Alleluia and glory be! The funk's on me!

  • MelanomaMama's Avatar

    MelanomaMama posted an update

    I am a melanoma patient and a professional writer. I have written a book (Melanoma Mama: On Life, Death, and Tent Camping) about learning to live a joyous life under the threat of late-stage cancer that will most likely kill me. The book is more about joy and fun than about tedious treatments. It has gotten all five star reviews on Amazon.com, and people are finding it inspirational (there's no religious angle.)
    My website is melanomamama.com. You can read the first couple of chapters for free either from my website or by going to Amazon.com, entering "Melanoma Mama" and clicking on the "look inside this book" feature. The book is available as an e-book as well as a trade paperback.
    My ordeal is ongoing, so we don't yet know how the story ends, but I plan to have a "happy ending," because I am learning through my cancer support group how to die well. Although I am still full of the proverbial p*** and vinegar, I have learned that my condition can turn suddenly, and I am preparing for whichever way things might take me.
    I wish you all the best. If you find your way to this book, and if you like it, please contact me. Contact info is in the back pages of the book. The email address is [email redacted].
    Constance Emerson Crooker

    1 Comment
    • JackCormode's Avatar
      JackCormode

      The way the melanoma has come back after so long is why I still get checked twice a year by specialists. 35 years mel-free next month, but the doctors keep finding things to get rid of before they become a bigger problem.
      Hang in there.

      over 3 years ago
  • MelanomaMama's Avatar

    MelanomaMama posted an update

    I'm a Stage IV melanoma patient, entangled in a tango with death. I usually don't use the word "survivor," because I think of that term for patients who are declared "NED." (No evidence of disease.) My inoperable chest tumor, and my cancer's tendency to crop up at inconvenient times and places precludes that diagnosis. The latest was a golf-ball sized brain tumor that revealed itself last February when I was on my way to see the opera, Madame Butterfly. So I went and enjoyed the opera anyway, and then checked myself into the emergency room. Brain surgery and subsequent gamma knife radiation were successful.
    Anyway, I prefer to call myself a "thriver," not a "survivor." I am so proud that I was able to write a book (published April, 2012 and getting great reviews) called Melanoma Mama: On Life, Death, and Tent Camping in which I relate the joys of a solo, cross-country tent camping trip which I hadn't expected to live long enough to enjoy. See http://www.melanomamama.com. It's available as a paperback and on Kindle and other e-readers.
    Melanoma was first diagnosed in 1990 when a mole was removed from my back, followed by a wide excision showing the cancer seemed to have been contained. I lived for many years with no sign of recurrence. Then, starting in 2008, I have undergone blood transfusions, interleukin-2 (immunotherapy), radiation, three surgeries (bowel, buttocks, and brain), gamma knife radiation to the brain, and most recently, ipilimumab (a newly FDA approved immunotherapy.) I'm still here, dancing, hiking, tent camping, and playing my guitar and howling (on and off key.) I'm also busy writing a sequel, Avoiding the Tuscan Sun: Melanoma Mama in Italy, about my dream-come-true trip to study Italian in Tuscany while living in an Italian home.
    I just launched my Facebook page (Constance Emerson Crooker: Melanoma Mama), and I journal often on the Caring Bridge website under the name melanomamama.
    My message is simple. There is plenty of joy to be grabbed, even in the valley of the shadow of death. I'm still breathing in and out. Must mean I'm still alive. So far, so good!

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    MelanomaMama shared an experience

    Celebration (I'm still sucking air!): I'm a Stage IV melanoma patient, entangled in a tango with death. I usually don't use the word "survivor," because I think of that term for patients who are declared "NED." (No evidence of disease.) My inoperable chest tumor, and my cancer's tendency to crop up at inconvenient times and places precludes that diagnosis. The latest was a golf-ball sized brain tumor that revealed itself last February when I was on my way to see the opera, Madame Butterfly. So I went and enjoyed the opera anyway, and then checked myself into the emergency room. Brain surgery and subsequent gamma knife radiation were successful.
    Anyway, I prefer to call myself a "thriver," not a "survivor." I am so proud that I was able to write a book (published April, 2012 and getting great reviews) called Melanoma Mama: On Life, Death, and Tent Camping in which I relate the joys of a solo, cross-country tent camping trip which I hadn't expected to live long enough to enjoy. See http://www.melanomamama.com. It's available as a paperback and on Kindle and other e-readers.
    Melanoma was first diagnosed in 1990 when a mole was removed from my back, followed by a wide excision showing the cancer seemed to have been contained. I lived for many years with no sign of recurrence. Then, starting in 2008, I have undergone blood transfusions, interleukin-2 (immunotherapy), radiation, three surgeries (bowel, buttocks, and brain), gamma knife radiation to the brain, and most recently, ipilimumab (a newly FDA approved immunotherapy.) I'm still here, dancing, hiking, tent camping, and playing my guitar and howling (on and off key.) I'm also busy writing a sequel, Avoiding the Tuscan Sun: Melanoma Mama in Italy, about my dream-come-true trip to study Italian in Tuscany while living in an Italian home.
    I just launched my Facebook page (Constance Emerson Crooker: Melanoma Mama), and I journal often on the Caring Bridge website under the name melanomamama.
    My message is simple. There is plenty of joy to be grabbed, even in the valley of the shadow of death. I'm still breathing in and out. Must mean I'm still alive. So far, so good!

    2 Comments
    • MelanomaMama's Avatar
      MelanomaMama

      I'm still sucking air. My joy is in being here and grabbing life by the short hairs.

      about 4 years ago
    • Crash's Avatar
      Crash

      You GO Gurl!! Walked my dog in the snow this a.m. Ain't nuthin finer. 38 year Thriver.

      over 2 years ago