Do you think these things are important to being a survivor?

Top 10 List for Cancer Survivors from the Centre for Integrated Healing in British Columbia, Canada

The 10 Common Characteristics of those who have undergone spontaneous healing of advanced, untreatable cancer are as follows - how do you rate?

1. In spite of being told that their cancer is incurable, they have a deep belief that their body can heal itself.

2. They take control and assume a recovery program that is unique to them. They reclaim their own responsibility rather than solely relying on experts.

3. They reconnect with spirit, awakening long hidden desires and aspirations. They reconnect with authenticity to their feelings and values and decide to live them.

4. They deepen and bring honesty to their relationship with others.

5. A complete re-assessment of their lives is undertaken. They are willing to change. This often includes diet, lifestyle, career, goals and relationships.

6. Radical changes in diet have been closely associated with spontaneous remission. These changes usually include decreasing processed, refined foods and animal fats and consuming more fruits and vegetables or becoming vegetarian.

7. They take vitamins and supplements to help support their immune system.

8. They slow down. Taking time to relax and fully enjoy the gift of life. Often prayer or meditation becomes a regular practice.

9. They become in tune with their body and 'listen' for cues relating to energy, emotions and body signals that are a part of daily life.

10. They rejoin with social networks and experience the joy of being of service to others. Through their own healing, they help to heal others. 

The New Year Begins - 2012

What a whirlwind the holidays were!  A bright star-filled Christmas eve around a bonfire with friends... Christmas Day here with just me, Pete, and the kitter catters...then a wonderful all day long feast & fest on Boxing Day (Dec 26) with my husband's family.  To top it all off, we zipped off to Ohio for a late Christmas with Mom (Petunia) and to bring in the New Year with her and family.  

Now back into the "groove" of the new year... Sigh.  A bit slow to find that groove.  Petunia Frog Eyes is doing terrific.  We finally figured out her relatively recent weight loss was indeed due to the diarrhea that was caused by a nasty little gut bug called C. diff (Clostridium difficile or C. diff for short).  Though it can be contagious, it also can occur after a course of antibiotics.  With a round of antibiotics (which she had in June for pneumonia), the good and bad bacteria are killed off - sometimes the bad ones grow back stronger.  Ironically - even though the C. diff can be caused by antibiotics - the treatment is also a round of antibiotics.  So, after the metronidazole (Flagyl), the bug appears to  have been eradicated.  Yay!  Mom had gone off of her supplement protocol because it seemed to increase the problem.  So she is now slowly introducing supplements back in, starting out slowly with her multivitamin, vitamin D3, Green Magma (green is good!  wheat/barley grass).  Soon she will be starting back on the curcumin, a powerful MM fighter.  And to help her body rid itself of the C.diff and replenish the good flora in her gut, she took a solid course of Florastor probiotics. 

Petunia Frog Eyes is on round 2 of the Revlimid/dexamethasone treatment for the MM (also called Rev/dex).  She takes it in pill forms at home.  One round consists of daily Revlimid (5 mg - the lowest dose) for 3 weeks with what is called a "pulsed" dose of the dexamethasone (20 mg) - which is just once a week.  So far, her side effects have been minimal compared to what she experienced last year with the much higher doses (25 mg of Rev and 40 mg pulsed dose of the dex) - which is The Goal - to get her MM numbers back into normal limits with the least possible of side effects.  She has learned to deal with the "dex crazies" - dex is a steroid and wires some people.  She takes it in the morning once a week and knows she will be up all night long... and the next day, she is not tired - not even a nap required.  She just expects and plans for it with extra movies to watch, good books to read.  She also spent time last night (Wednesday is dex day) learning more about her new iPad, a Christmas gift from my brother.  She is eager to learn it and having fun (when not being faced with the differences between a Mac and a PC,having only used a PC before!).  The first thing she discovered on the iPad was the special effects you can apply to taking pictures.  The two of us spent hours it seemed, taking pictures with these special effects and laughing and laughing. 

Mom sees her new oncologist on January 9.  Our fingers, toes, and eyes are crossed that it is doing the job expected - and that getting back on her supplements - especially the curcumin, Green Magma, garlic, and green tea extract - will also help with their synergistic magic.  There have been studies done by Professor Aggarwal at MD Anderson Cancer Center that showed curcumin enhances/potentiates the effects of many chemotherapeutic agents including.  Even better, a study is starting at the same institute with curcumin and Revlimid (lenaliomide)!  

Petunia Mom continues to inspire and amaze me with her zest for life, her strong connections with so many special people who love her so, and her unflappable sense of humor.  So, Happy New Year from both of us!  (Okay Mom, your turn - time for you to tell some more funny stories on yourself!)

A Story from Petunia Frog Eyes, My Mom, Janet

Mom, I posted what you wrote here instead of in comments - thanks for posting.  Tell more fun stories!  The picture here is of Norma and Mom.

 

  

 

Janet writes:  My daughter Twila started this and I think it's great. Now I guess I will have to share with everyone some of the other "goofy" things I have done. A few years back my friend Norma Linkhart and I drove to Memphis, TN to see everything related to Elvis of course. While we were driving, Twila was flying into Memphis. On the way, Norma and I were to busy talking to pay attention to signs and ended up going many, many mile out of the way. It took us 14 hours to get there, approximately 9 to get home, so that gives you an idea. While there I of course took my crazy glasses and Billy Bob teeth. Naturally I wore them everywhere up and down the street and even in stores, buying items and acting like nothing was unusual. In the meantime Twila and Norma are standing out side of the store laughing like crazy at absolutely nothing; at least that is how it would have appeared to others. I also danced with a guy dresses like Elvis, again with the glasses and teeth. There are many other stories, this is just one.

November 27, 2011 5:45 PM

Catching Up... and Thanksgiving

Thanks Mom for posting your funny story (above).  So, I am finally catching up on our blog.  Pete and I just returned home to Virginia from Xenia, Ohio, after a great holiday with Mom.  We spent Thanksgiving with Sheri and family.  Sheri is the daughter of one of Mom's best friends ever, Pat Felton.  She loaded us up with all kinds of leftovers and sent us off feeling well loved.  We missed seeing my cousin Cathie, as her husband Dale has a flu bug.  My husband Pete and Petunia-Mom visited with her forever friend from Bowersville (school days), Jane, who was visiting Ohio from Delaware with her husband Bob.  They visited with Jane's sister, Lois, and her family, Sue and Roger, while I was catching up with friends from high school with whom I've reconnected with on Facebook.  We also spent a day with my brother Tony and his sparkling wife, Anna, seeing their beautiful home, meeting their snuffle bugs, JT (James Taylor, of course) and Coco (Chanel) - Yorkshire Terriers - and connecting even more.

Before this Thanksgiving visit, I spent a couple weeks with Mom in Xenia (though I had to work from there).  With her diligence and motivation, she found a new oncologist, Dr. Gordon, who we both loved.  He totally  "got" Mom and her wishes for quality of life and understands her sensitivity to medications.  He is not of the "my way or the highway" mentality of her last oncologist.   A blessing indeed.  Even better, we connected with some really special folks at a MM support group at Miami Valley Hospital in Dayton - what a great group of people.  At this meeting, there were some tears, lots of stories shared and so many nods of agreement and understanding and support, and so, so much hope!  Every story told there included dire prognoses - months, a few years, five years, one year.  Amazingly, every. single. person. (no matter what stage) was well beyond - often by many many years - their prognosis. Mom and I left feeling connected and lifted by these wonderful people sharing their hope and experience. 

So, tomorrow Mom embarks on a low dose round of chemo. She's not thrilled... but she's staying Petunia-Frog-Eyes positive.  She has the support of us all, I know that, and she welcomes hearing from you (funny face pictures are always a bonus!).   She has much love behind her, and I have no doubt she will be in remission quicker than the blink of an eye.

The Why's of Petunia's Blog

I thought I would share what motivated me to start this blog.  The bottom line was that I realized that writing about my Mom's experience - and eventually allowing the blog to reach a wider audience - might actually encourage or inspire, give courage or hope to, or in some way help someone else who has multiple myeloma or other cancer, or help someone who loves someone with MM or cancer.  

All of  us know of or hear of or meet someone with cancer - it seems like it's everywhere.  In the space of a week, I had so many emails or talks with friends related to cancer.  It was weird. What really got me thinking about blogging (hoping that my Mom would write too) - was when two friends asked me to send them my Mom's multiple myeloma protocol - the supplements and things she is doing that have led to her remission of MM. 

There was my friend whose coworker's daughter was diagnosed with breast cancer; our friend who was diagnosed at age 46 (same age as me) with non-Hodgkin lymphoma and had started chemotherapy; another friend who has a coworker who is facing, at age 36, a recurrence of her colon cancer.   There's my niece who was fighting cancer and lost the battle.  The last motivating straw was hearing about a dear friend's brother being diagnosed with multiple myeloma, the same supposedly "rare" cancer as my Mom.  He was 49 at diagnosis and started chemotherapy for his MM (an update on him is that he is responding great to the treatment!).

What is going on? 

When faced with cancer - or disease of any kind - we all have to make our own difficult decisions, taking in all that we can to decide the best course. In this last year, we've learned so much about multiple myeloma, cancer in general, the billion dollar cancer industry, nutrition and supplements and the part they play in our health, and how to help the body fight cancer... the list is endless. 

I have some questions to pose:  What do you think about an adult's right to refuse treatment for cancer (or any disease) and to try alternative therapies, or to try nothing?  Is it an easy answer?  Have you ever contemplated this for yourself?

What's Up?

This blog hasn't received the attention from me that I hoped it would.  As with many new undertakings - life intervenes!  It was a busy summer with gardening.  Mom has been doing great.  We spent her 72nd birthday in June at Bethany Beach with family  (thanks to my in-laws having a wonderful place that they share), and we made a repeat trip back in September to celebrate my 47th birthday with more family.  Mom's markers (the classic "to watch" MM markers of beta 2 microglobulin, M protein, the IgG level, and the kappa serum light free chain) went up the last few months, out of the normal range.  This is when the oncologists usually recommend starting a new or different combination of treatment - chemo, that is.  We are in the process of revamping Mom's supplement MM protocol... and she is in the process of considering having a very low dose and short round of chemo to get those numbers back into the range.  She also started taking curcumin a few months ago.  Curcumin is the active ingredient in the spice turmeric.  It has lots of indications in helping multiple myeloma with no side effects.  I've "met" some awesome folks on Facebook, on the Multiple Myeloma Support Group (nonprofit) as well as on the forums at The Myeloma Beacon.  I will be adding some website links related to these items.

From Whence Came the Name of Petunia Frog Eyes

My Mom's nieces & nephews & other kids have long called her Aunt Funny Face... and Petunia Frog Eyes.   I've known of the Petunia Frog Eyes nickname since I can remember.  I was hoping my Mom would write about the origins of this nickname.  In the meantime, she tells the story about when she was a cheerleader back in her home town of Bowersville, Ohio.  Whenever there was a basketball game and all of the cheerleaders would go over to meet the opposing team, shaking hands with each other, sharing their names, my Mom always said "Hi, I'm Petunia Frog Eyes!" with a smile... and never batted an eye.  I love this story.  There are so many funny stories like this one that my Mom tells.  I want her to tell some of those stories here!  (come on Mom!!).   I was a pretty humorless teenager  - which probably made her wonder from whence I came!  Thank goodness her Humor Gene did express itself in me as I swam out of the angst of teen years.  Laughing and being silly is one of my most favorite things to do, especially with my Mom.

Memorial Day Weekend 2011

Hope everyone is having a fun holiday weekend.  

Every Memorial Day weekend as long as I can remember, my Mom attends her alumni banquet.  What's always fascinated me is that this is alumni from the entire history of the school.  The number of attendees is around 114 this year - yes, a very small & close-knit school.  She has been on the committee that does all of the planning, arranging the food, keeping up with addresses, who will attend, etc.  So, today, as I type, my Mom is spending time with lifelong friends and her sisters and family:  Connecting, renewing the bonds, laughing,  & telling stories.  I love this about my Mom - her numerous connections with so many special people.  Even better is to know she feels well enough to do all that she did in preparation to help make this event a success.  In the recent week, her back was aching more than usual... Dr. Soin, her pain specialist, helped her with an injection.  Taking her pillow with her makes any seat more comfortable.  Anyway, I can't wait to hear all the details of the banquet. 

Next up:  Petunia's Plane Trip into Dulles International Airport on June 11!   We'll be driving to the beach to celebrate her 72nd birthday with family.  Lots of west and wewaxation and soaking up the negative oceanic ions and howling at the full moon.  Can't wait.   

Oh, and the MM labs... we are waiting on one more, the beta-2.  All of the others are just a teensy bit higher... but these fluctuations are normal even for those on constant conventional chemo.  The other labs that matter are so normal - she has a lipid panel (cholesterol) that many would envy!  

(Added later, pics from our trip to the beach to celebrate Mom's 72nd birthday!)  

Mom and Jane, best friends since high school, June 2011

Mom celebrating her 72nd birthday on Bethany Beach! June 18, 2011

 

Artsy fartsy but cool pic of Mom enjoying the beach.

 

Here we go!

Well, I'm brand new to blogging and surprised I've gotten this far.  I'm making this post to see if, well, I can make a post.  I'm hoping my Mom will join me here on this blog... to bring her unique viewpoint & sense of humor and goofaliciousness to this blog... and because, well, it is for her and about her.  Not sure what this blog will evolve to be, but hopefully you will join us on the this blogging journey.  Currently, we are watching the labs roll in online on Ohio State University's My Chart.  My Mom sees Dr. Glen Aukerman (his brother, Norm, was a coach/teacher at Xenia High School back when I was in high school... many moons ago, circa 1982!).  Dr. A is the head of the Integrative Medicine Department and has a great sense of humor.  Okay, here we go...