melanomamama-112571

http://www.melanomamama.com/memoriam.php

Connie passed away April 10, 2015. The link is to her obituary. Soar with the eagles, Connie.

Dear Melanomamama- I have been thinking of you
and hoping that your Keytruda treatment is working
wonders on your magnificent and creative brain! I enjoy
your energy for life!

http://www.melanomamama.com/memoriam.php

Connie passed away April 15, 2015 The link is to her obituary. Soar with the eagles, Connie.

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 ass.)
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!

Melanoma Mama, Just read your reply, was on vacation and overwhelmed by work.... what a HARD time you are having and I am praying for you fellow warrior!!!

hope you're okay melanomamama! Take Care!

Love the Great Downsizing Potlatch story!

Hi melanomamama, Just ready your message. Sounds like you have a plan. My husband and I just went through the moving thing from our forever home down to a small apt. Actually the good thing for us was it's closer to all the medical offices and easy to clean...

I was thinking the same thing about religion today. We shouldn't assume. It can be hurtful and/or aggravating. I'm glad you wrote something about it. Thank you!

-MM

@melanomamama So glad you found out how to delete the unwanted posts!

Melanomamama where can I get a copy of your book?

So glad you found out how to delete the unwanted posts!

To delete comments, click on 'more', right next to 'like' and 'delete' will show up.

Re Ebola post. Maybe projection is a better word to use here than transference. Psychological projection is a theory in psychology in which humans defend themselves against unpleasant impulses by denying their existence in themselves, while attributing them to others. (Wikipedia)

melanomamama: I enjoyed your debate re abortion. Your arguments based on logic and law were very refreshing (something different).

[Some men] will never be self-aware enough to know using women to incubate cute, adoptable babies is patronizing and much worse. It's so "The Handmaid's Tale."

I had an "abortion" years ago. At the time, I didn't really notice it was an abortion. It was, to my grieving mind, the surgical removal of an embryo that was not maturing properly and would eventually become a miscarriage. Because I was under the care of a fertility expert, we knew very early that I was pregnant. My husband learned to give me hormone injections to help maintain the pregnancy. It didn't work.

After the embryo was removed, I remember thinking, "I will never smile again." Of course, I did smile again, but never achieved another pregnancy, though the removal of the embryo that would never become a child was meant to preserve what little fertility I may have had left.

Some people don't understand because they are unimaginative. They lack empathy. Perhaps if they imagined fundamentalist oncologists refusing to remove tumors until they weighed 7 pounds.

I felt your frustration re other's misunderstanding of the role of the judiciary. A letter to the editor today wondered how an uppity appeals court judge could negate a law passed by a majority of the state's citizens years ago. Of course, the letter-writer had completely forgotten that the judiciary exists to do just that - determine the constitutionality of a law despite the popularity of that law. Aren't there enough examples in history? I despair.

-MM

Thank you for telling me about your book! I will read it! Wow- you have had melanoma for along time! You are an amazing survivor! I cannot believe how 18 yrs. later after the wide excision it came back. What do I have to do to remain vigilant like you mentioned? I would really like to go the holistic way of healing.Did you? Does this mean I can never go out in the beautiful sunshine again? I was born and raised on the beaches of Southern Calif. We have a boat- it is our family fun. I know I have to change a lot of things to save my life! I am so happy for you that you have done so well and being an inspiration to me and others!

Hi there
I am closing in on my one year anniversary of being diagnosed with mestastic melenoma. I consider myself fortunate that my quality of life is good for having cancer. I am on half dose of Zelboraf as my body rejected full dose with horrible side effects. Will be going for a scan this Friday to see where I stand, my oncologist is suggesting different treatment now.

Hi Melanomamama

Itching is a good thing it means it is healing.
Check with your doctor or PA or your local pharmacy for some lotion or cream that helps with the itching.

Thank you! You know, I used to live in the Portland area. I moved to Alabama about 7 years ago. I really miss the cooler, misty weather, and all the festivals on the waterfront!

Hi Constance, we have an opportunity for melanoma patients to participate in a survey/study about their treatments they have taken. It's a simple survey that will take about 90 minutes by phone, if you qualify to take the survey you will be paid $200.00. If you check your email you will find an invitation to take the survey to see if you will qualify. Let me know if you have any questions.
Greg

Glad everything is back on track. Wishing you wellness!

Hi Melanomamama!
I just looked at your website, and admire the work you have put into sharing your experiences over a long period of time. What a gift your path offers to anyone diagnosed with melanoma (bless you).

I especially like the photo on the home page of you (more or less) dancing on your grave-ha! ha! GREAT GREAT GREAT! I felt more alive and energized just looking at it. In fact, I think I'm going to bookmark it, so that I can catch the spirit and energy of that photo from time to time. It's joyous and triumphant.

Your perseverance, courage, and generosity are evident. May all that you offer be returned to you many times over.
(Ms.) Lee in San Francisco
Anal cancer diagnosis with treatment completed just prior to Christmas--and feeling very good about it all

Fantastic News!!! You are so blessed Keep pushing forward there is nothing like getting NED!!!!!!

Hey cookie! It's Shady from Epic! I hope you are having a great time!

I had a similar experience. Mine came back after 20 years. I am now in treatment with YERVOY.

Thanks for the Kudos on my songs.
I'm the same age as you and some days I feel 150.
I'm doing ONLY Natural Stuff and it is Lonely doing it. I wrote one song about going against what my wife, family, friends and other docs want me to do called "DON'T RAIN ON MY PARADE"

I did want to share one particular song I wrote since My Diagnosis called THE HEALING TREE...It's about a Dream, a young Boy, brain cancer and a cure.

http://www.youtube.com/watch?v=20Tt4e2lUVI

Keep on keepin on.
Barry

Just shared the IRM video you recommend on my Facebook page. Every time I have one I think "which I could compose something with all these sounds"

Have you ever heard of The Urantia Book?
Urantia means planet Earth. The book is on line for free...check it out.
Barry

BTW....2 months ago I ALSO had a Stage O Melanoma and have had one squamous cell 7 years ago also just at the beginning. I go to the damn Dermatologist every 3 months now and he cuts me up like a piece of meat.....
I'm being monitored form my Non Hodgkin's Lymphoma by my Surgeon who did my initial biopsy on a node. I've had a pet scan and that's it. I'm on my Protocol now.
Barry

Check out The China Study and this site below...Chris also has a great facebook page

http://www.chrisbeatcancer.com/

Good Luck.
Use God as your Nutritionist.
Barry