Kaiulani Facciani

Author's details

Name: Kaiulani Facciani
Date registered: August 22, 2015
URL: http://imgonnaliveuntilidie.com

Latest posts

  1. Cuba 2015 — January 12, 2017
  2. – Breasts, a poem — August 24, 2016
  3. Gratitude Tour – Reunions — August 5, 2016
  4. – A Story of Hope – Mesothelioma — July 12, 2016
  5. – Lessons I am Learning — July 6, 2016

Most commented posts

  1. – Cancer IS a Gift! — 10 comments
  2. U.S. Road trip – 2015 — 9 comments
  3. – I stand alone… — 6 comments
  4. – The long, dark night that leads to the path of light — 4 comments
  5. – The Graceful Warrior — 4 comments

Author's posts listings

Cuba 2015

IMG_2607

April & May, 2015 – I flew into Havana from Cancun, rented a car to explore the western side of the island, then hopped on buses and traversed the entire island all the way to the eastern tip. For the most part, I stayed in “casas particulars’, or private rooms in Cubans’ homes. Many times, I ate in their homes or in ‘paladars’ (private dining rooms). I LOVED Cuba, and especially, the Cuban people and the music. The thread of my posts with photos follows (or you can click here) and you can see a map and a description of destinations here… Route & itinerary

.

 

– Breasts, a poem

Written early Sunday am, Sept 13, 2015
By Sue Van Hook, DCIS thriver

I was born with two of themBreasts
Felt the breast buds emerge
Bound them with soft trainers
Until bra less set them free.

Rarely thought of them as precious
Glad for their smallness
Less hassle in the braless days
Could wear anything, go anywhere

The world’s smallest areolas
From all that I had gleaned
No, not my best feature
Did I have one best?

Then one day someone noticed
Beneath my sleeveless T
He said “Your breasts are beautiful”
Then I noticed and agreed.

Loved them even more
As they filled with nourishment
For 3 lovely daughters
Who became lovely women.

That miracle of bonding
With no words to describe
The closeness and the love
That I felt inside.

I’d already lost an ovary
And tube at the age of 26
With cysts removed from
The one they left.

So what a gift to bear 3 girls
From a few eggs that remained
What would I teach them?
What had I learned?

Imagine my surprise at age 43
When I felt a lump
It grazed the sternum, hard and sore
A pea sized thing on top

The pea-sized growth was bigger though
Deeper down inside
It measured 5 cm at the widest part
How could that be, I cried!

I lost the left with one node involved
AC and taxol followed.
And with my mind and vitamin E,
I kept my fair skin from burning.

I exclaimed to the one I love
They’ve fed our children well.
And he replied, but darling dear
I’ll miss the left of you.

The time has passed for 18 years
With gratitude every day
For all the gifts and friendships forged
While healing from the inside out.

Love your breasts whatever their size
And miss them when they’re gone
They will in part define
The person you become.

 

Gratitude Tour – Reunions

The value of a walk down Memory Lane…

A diagnosis of Stage 4 forces us to confront our mortality, ponder the meaning of life, and wonder how we ended up on this journey. While it didn’t provide any answers, my summer sojourn down memory lane gave me a long-view perspective of my life to date. I am so very grateful to have reconnected with so many who played important roles in my life. The beginning, the middle, the end… is love.

 

40th High School Reunion (wherein I experience the shocking realization that I am old)

IMG_1810group shotScan 6

My first stop was southern Idaho for my first 40-year high school reunion. I didn’t graduate from this high school but I grew up with these kids from age 10-16. Those are pretty formative years and I have a lot of fond memories and affection for this crowd. Facebook had already reunited many of us and I am so grateful for the love and support I received while I fought the cancer demon down.

 

Boise (wherein I act the hobbit and have two breakfasts)

IMG_1835 IMG_1844

 

 

 

 

 

 

 

 

One of my dear friends has a relative who has virtually the same diagnosis as I (Stage 4 metastatic breast cancer). I had the pleasure of meeting this mighty warrior queen with her loving mother-in-law for breakfast. I wanted to give her lots of support and any info she might want but she is doing all the right things and seems to be handling it all so well. Join me in praying for and supporting Amy as she walks this difficult road we know so well. Then, I got to take my beloved surrogate parents out for breakfast. They are aging as gracefully as we all can hope to. I am so very grateful to them for all the love they have given me throughout my life.

 

McCall (wherein I bask in the beauty of a mountain lake with my bestie)

IMG_1860IMG_1930IMG_1961

So many things this woman has taught me… from the early age of 12. Look at her surf… she’s my age! She taught me how to love unabashedly and to suck as much joy out of every moment that one can. I am so grateful to have her and her sister and husband in my life.

 

Missoula (wherein I pretend I am in my twenties again)

IMG_1974IMG_4110IMG_1968

IMG_2029

 

First I get to take my darling niece out for cocktails. Then I get to raft the river with my nephew and his adorable girlfriend and friends. Then we all get to enjoy the String Cheese Incident in concert. Nothing like hanging with the young to feel young. I love these people and am so grateful to be able to enjoy these things!

Live until you die, am I right?! Can I get an Amen?

 

 

IMG_1994 IMG_2016

 

Coeur d’Alene (wherein I reunite with 4 generations of cousins in a stunning historic lakefront manor)

IMG_2071IMG_2104

I have to start with these two photos because they showcase 4 generations of beauty and grace as well as a grandpa who is completely besotted with his great-granddaughter. For the most part, I hadn’t seen most of these people in 40 years and just met the others. Why, oh why, did I wait so long? I feel such gratitude for the opportunity to reunite with long-lost loved ones and meet the new additions.

 

 

All these people are cousins… two first cousins, two first cousins once removed, two first cousins twice removed, and one first cousin thrice removed! Oh, and then their partners joined us… 18 for dinner!

IMG_2100 IMG_4151

 

 

 

 

 

 

 

 

This lovely family compound was built over 100 years ago! So much love and history within these walls

IMG_4148 IMG_4140IMG_2084

There’s life in the old girl yet! I’m talking about me paddle boarding, but I really am saluting cousin Bette, all 4’9″ of her. She is a two-time cancer survivor herself, in her 80s, is a hospice volunteer to give back for her survival, and has been my biggest cheerleader from the sidelines throughout my ordeal. I hadn’t seen her since I was a kid but we developed a fond penpal bond and she hopped in her car and drove a day’s drive when she heard I was going to be in town. She is my hero. Love that woman! I think she secretly sports a “Live until you die” tattoo.

IMG_4125IMG_4139

 

 

 

 

 

 

 

 

 

My 2nd 40th year high school reunion (wherein the posse rides again!)

I went to two high schools, so I was blessed with two reunions, a week and 600 miles apart. Going to both of them was the impetus for this trip which turned into so much more. 4 of the 5 girls who hung out regularly got together for the first time in 40 years! We aren’t getting older, we’re getting better and I’m oh, so grateful for that!

IMG_2138IMG_4162

 

 

 

 

 

 

 

 

Seattle, (wherein I see my family who nursed me back to health)

No Gratitude Tour is complete without visiting my sister and my son who cared for me when I couldn’t care for myself. I will forever be grateful to all these people. Counting my blessings…

IMG_4165IMG_4166IMG_4172

Save

Save

Save

Save

Save

 

 

– A Story of Hope – Mesothelioma

katherineReflecting back on my original cancer diagnosis, and the prognosis that followed, it’s hard to believe that I’m sitting here writing this today. But as the old proverb goes, everything happens for a reason; and I believe that reason is to share my experience with the readers of I’m Gonna live until I die. My name is Katherine Keys, and this is my story.

I have been fighting Mesothelioma for virtually nine years now. For those of you unaware, the survival rate for mesothelioma (relative to 5 years) is less than 10%.

Hearing my prognosis was one of the toughest moments of my life. Much like any traumatic event or experience, the pain that followed was immense, and the rush of persisting emotions was almost unbearable.

Weeks went by, and the parts of my brain that trigger pain continued to light up in an erratic fashion. I eventually lost control. I acted out, projecting emotions onto others, crying persistently and at one point considering whether to push on.

Like most traumatic instances in life however, I moved on from it. It wasn’t too long before my smarter senses kicked in, and I knew that my behavior was doing me no good. I can’t remember the exact day or moment in time, but at some point I said to myself “I’m not going to let this consume me or control my life.” Whether it was the end of my physical existence here in this universe or not, there was no way my life was going to end after hearing that news. Of course, the typical procedures and processes followed; I was treated in a variety of ways, including the removal of a lung. I went through countless hours and days of radiation and chemo and I had a diet that really never quite agreed with my insides or me.

Aside from this however, I ventured into the realm of alternative medicines and therapies, including Reiki and meditation. I sought counseling to deal with some of the trauma and pain, and above all, I stayed positive and true to my faith. Like many people who go through hardships, I had a mantra, which I repeated to myself every day….that included accepting each and every day as a chance to change or enhance my life in ways I couldn’t on days prior. Part of that involves remembering that life must be taken one step (or day) at a time.

When your mind likes to wander into places that are undoubtedly dark, it’s very important to remember to have a mantra like this. And it’s also very important to remember that you have friends and family around you that supports you.

Eventually, more time passed. Again, I had an epiphany moment, after a while my previous mantra evolved into something deeper, where I started to tell myself that my only battle I was fighting was against myself.

This was a very defining moment for me, and with the help of the teams around me, including family, medical professionals, legal experts and an intricate network of care specialists, including nurses and doctors, I knew I had already won my battle.

Ultimately, my positive attitude and determination to win against “all odds” played a tremendous role in getting me to where I am today. But again, regardless of the illness or struggle, I learned that the one that that will always stand in your way is you – Time and again I find that to be true, and will hold on to that forever. Regardless of what you’re suffering from – whether it’s the removal of a lung, loss of hair or shortness of breath, these are words to hold onto and cherish.

Today, I feel blessed to be able to spend time with my family and share this story with other people. While I have been through a lot and to this day am still challenged by physical pain and limitations after having a lung removed, I see every day as a gift. A month or two after my prognosis, I remember a close friend telling me, “Katherine, you’re not dying from cancer, you’re living with it.” I suggest living by this as well.

 

– Lessons I am Learning

November, 2012 – soon after diagnosis of Stage IV breast cancer and prognosis of just weeks to live.

Five years ago, I had Ductal Carcinoma In Situ (DCIS), which is Stage 0, pre-cancer. Not really even considered cancer to most doctors. But the cells in the mass in my right breast were seen as aggressive and on the verge of turning invasive so the doctors at MD Anderson felt strongly that I needed to have a mastectomy. So I did. They also took 6 lymph nodes in my armpit to determine if any invasive cells had “left the building”. None were found but some cytokeratin was found in those cells. That could be from one of two things… cancer that might turn invasive had exited or, the more likely scenario, they were leftover cells from the numerous biopsies I had had. They said that preventive chemotherapy was available for me. I asked what was the chance that it was invasive cancer and that the chemo was needed. They said about a half of 1%. I said that my research showed that I had at least a 10% chance of getting leukemia or some other type of deadly cancer from the chemo itself. I’m not a math major but it seems that it was 20 times better to not do the preventive chemo. They said if I put it that way, I shouldn’t do the chemo. I thought, “shouldn’t you be putting it that way? I mean, isn’t that kind of your job?”

Well, five years later, this little smart ass is full of invasive breast cancer, so I guess I should have had that preventive chemo. But see, I was so full of my smart and sassy self who had researched all the causes of cancer and the naturopathic ways of preventing and defeating it, without chemo and radiation. Yes, I had played chicken, and had the surgery in the interest of keeping time on my side, but I was so convinced that I could defeat cancer and keep it at bay with what I had learned. 50% of the people on my mother’s side of the family had had cancer, so clearly there was a genetic link. I discovered we had hereditary hemochromatosis, which results in too much iron, which feeds cancer. By giving blood, I could keep the iron levels down and negate the problem.

The naturopathic prevention and cure of cancer revolve around three aspects of your “bioterrain”… toxins, nutrients, and emotions. I completely changed my diet to organic, nutrition-rich, anti-inflammatory, plant-based, cancer-preventative foods and detoxified my body regularly. For five years. Yes, I was guilty of putting occasional toxins in but I felt that my regular detox regimen would take care of the few toxins I cheated on.

The CDC states that 85% of disease is caused by emotions. I did a lot of emotional work. I opened up my mind and heart to dealing with previously unresolved issues. I felt cancer changed me in so many significant ways. I grew so much emotionally, I really felt changed. But this, I believe is where I fell short and I left the door open for cancer to return and ravage me. The last couple of years were very stressful for me and I did not handle the stress well. It’s like I forgot what I learned or I was too lazy or in denial. I started to internalize the stress in a very toxic way. And from where I stand now, fighting for my life, the things that I stressed about are not as important as they seemed at the time.

I’m telling you this because we are all stressing about similar things these days and I want you to think about how you are handling the stress in your life and how you can handle it in a healthier fashion than I did. I need to think long and hard about how to really internalize and incorporate deep-seated emotional changes into my life if I want to survive this.

The world seems to be going through so many changes right now. Most of them are difficult but so many of us feel that maybe we are heading for a deeper crisis from which a new world order can emerge because our current priorities and lifestyles are not sustainable. It all seems to center on selfishness and greed. The collapse of our personal wealth was caused by people who got too greedy. The demise of our ecosystems, our weather, our planet, our home, is being caused by our individual unwillingness to have less than our neighbors or what we had yesterday. A timely example of the madness… today is Black Friday, where people trample each other for sales exactly one day after being thankful for what they already have.

There are very few of us that have not been affected by the economic downturn. It has lasted longer and been worse than any of us were prepared for. We’d like to think that we are bumping along the bottom now and that things will be improving soon but it could just as easily go the other way. The situation has changed the behavior of the average person you deal with. In my case, I pay my bills by providing housing to people and I seem to have landed on the bottom of the food chain. When people don’t have money, it seems the landlord is the last to get paid. After 20 years of being a landlord, I found myself in the position of being owed $20,000 and, for the first time, had to evict two parties and take another 3 to court. I felt I had no choice, people were not taking responsibility for their own lives and it was all landing on me. With every action, I tried to do the right thing and handle everything with heart. But in some cases, people turned absolutely vicious and it took a serious emotional toll on me. I had to borrow $20,000 from the bank at high fees to turn around and pay my mortgages or risk losing everything I’d worked my entire life for. That doesn’t necessarily make me greedy. But the stress and worry from my attachment to material possessions created a toxic bioterrain where cancer gained control. Would I trade it all now to be cancer-free and not facing my own mortality?

Five years ago, I emerged from cancer with the commitment that I had to be less responsible for other people’s happiness. That included a dozen tenants. I put one of my properties up for sale… 2 months before the market crashed. I kept lowering the price too late, chasing the plunging market. It is now worth less than half of what it was 5 years ago. So many people have lost more. I’m one of the lucky ones. But I have clung, for too long, to the unrealistic expectation that I must not go backwards… that preserving my material worth is necessary for the survival for myself and my son. As a single mom who worked very hard for every scrap of it, I suppose I can be forgiven. But, if I am lucky enough to survive this cancer, it will be because I can get myself to a place where I can truly let go, cut my losses, be free of the chains of financial attachment and stress, and focus on what’s truly important…. love and light.

I’m also guilty of having wanted too much for my son in other ways and that created deadly stress levels as well. I am guilty of overmothering my son. I have been unable to separate myself from his own personal challenges and let him figure things out more independently and on his own. I knew that on some level and that’s why his Amazon survival semester has been so important, to both of us. Also imperative for my survival, and his, is that I accept and embrace who comes out of the jungle next week. Our roles will be reversed. He will be taking care of me. And this little control freak needs to surrender wholeheartedly to that.

And I need to meditate everyday on how lucky I am to have him and all of my loved ones. And that every day is a gift, no matter how it’s wrapped. I love and appreciate every one for what they have given me in my life.

I walk the path of the warrior. I do not accept that I will die from cancer anytime soon. It doesn’t matter what others tell me. I have my own truth which I must live. Or I will die. Spontaneous healing happens. Miracles in medicine are being discovered everyday. We each must find our own path. But it is clear that we must not give up. Or is it?

I am fighting the good fight. I am cleansing my body of toxins and providing it with nutrients and anti-cancer remedies, both naturopathic and toxic modern medicine. I am exploring my emotional landscape now as my primary unexploited weapon. And I become increasingly less comfortable with the metaphors of war.

I do believe that my inappropriate handling of emotional stress contributed to cancer returning and ravaging me. I think that my innate tendency to control my world is part of that stress. I think about acceptance and grace and surrender and how to incorporate that seemingly opposite concept into my fight. It’s like the Buddhist paradox… in order to achieve enlightenment, one must give up all goals. Yet achieving enlightenment is a goal in itself and requires commitment to that goal.

So, how do I eliminate stress and my control-freak tendencies that feed cancer while being determined to rewrite my own destiny by kicking cancer’s ass? How do I incorporate grace and acceptance that my path may not lead to survival and achieve serenity from that surrender into my fight for survival?

Thoughts and emotions are part of the physical landscape and they are crucial to the healing process. I’ve tried to get tough with my cancer. I’ve tried to direct anger towards it. But it feels wrong. Anger is a toxic, negative emotion. Cancer feeds on negativity and toxicity. And, frankly, I am grateful to cancer for what it is teaching me… again.

Five years ago, I focused on kicking cancer’s butt. I felt alive. I took care of my body. I made sure everybody knew that I loved them. I focused on beauty. I focused on sending love to my breast. I knew she was scared because whenever anyone mentioned mastectomy, she throbbed with pain. I assured her that we were a family and that no one was going to break us up. I dreamt that my breasts talked to each other while I slept…. sister to sister. I wrote my breast a letter…

“Dear Boobalicious, I love you. I’m sorry you are hurt. You are not alone in your fight. You are still beautiful. You will grow new cells that are healthy. The old, broken cells will die and pass through and away from us. Be strong in who you are and know that you are loved and will endure. Nobody’s taking you away from me, we will grow old together. Your sister will give you strength and help you heal.”

I wrote my cancer a letter and proposed a deal…“I know why you came and I thank you. You are no longer needed and your purpose no longer exists. I now appreciate life and love, thanks to you. Your time is over. You can live out your natural life. There will be no more violence unless you violate this treaty by continuing to multiply. Multiplying hurts me, it hurts my breast, it hurts you. It will not be tolerated. Go in peace.”

I thought about giving up, leaving it to the Fates, the doctors, God… anyone, as long as I didn’t have to take responsibility anymore. It was bigger than me. But I thought, if I give up, then life has no meaning… it has all happened for nothing. I’ve always envied those with a sense of purpose, those whose destiny is clear. This, apparently, was my destiny, and I needed to rise to the occasion. I decided that my strength was greater than my fear and that my strength would heal me.

But I had that mastectomy. And that cancer didn’t go away. Now, 5 years later, I have Stage IV cancer that the doctors say will kill me. I look for answers, all day every day. What if the only answer is that there is no answer? That this just happened because life’s a bitch… and then you die? What if my legacy is not to teach people how to fight? What it if is to teach people how to surrender to and die with grace?

Naaaaahhhh! Sorry, but it makes me giggle. I really do need to embrace and incorporate grace. But who I am is a fighter that makes life on my own terms. I must fight stronger and harder than I did five years ago. I am not ready to surrender. I have served cancer an eviction notice as an ironic swipe at my landlord stress over the last year. I will do everything in my power to get it out and try to keep it from coming back. I will continue to be tough and committed and I will not yet entertain the notion that I might not prevail.

And I will meditate on grace and love and beauty and light and use them to vanquish my foe in ways I didn’t understand then.

I will walk the path of the graceful warrior.
Update note: In May, 2016, I celebrated two years of being NED (No Evidence of Disease). : )

Gratitude Tour – Island Style

Kailua Beach, Oahu, Hawaii


 Far from shore, the swell rises.
A lone surfer leaps to catch the long, languorous ride.
The wave breaks with a pounding crash, prostrating itself at my feet and
kissing my toes where foam meets sand.
That kiss electrifies me with the
epiphany of all that is beautiful
and sacred in this world…

 

 

IMG_3905

 
 
I grew up in Hawaii, and after I survived my first dire prognosis of imminent death and regained my ability to walk, I wintered there. Alas, it was in Hawaii that they found 9 leptomeningeal brain tumors and delivered another dire prognosis of just weeks to live. How I defeated them is covered in My Brain Metastases, but that’s not the subject of this post.

 

 

IMG_1346IMG_3931

The point is that every day, I soaked in the bay I grew up in and prayed to the kahunas to heal me so that I could return. That opportunity came in the form of my son’s 24th birthday… a day I was so grateful to celebrate. His darling and impish girlfriend and I conspired to kidnap him and surprise him. The second surprise is that I joined them on the second leg of their flight and we got to spend a wonderful week together, celebrating his birthday and my 2nd anniversary of NED. All in the comforting embrace of my childhood home…. and the kahunas.

Kaiulani Facciani Gratitude Tour - Island Styleskydiving kaiulani faccianiWe have been long-time scuba enthusiasts and it was a joy to welcome his girlfriend into the club. He had always wanted to sky-dive and that was her present to him. Thank God I didn’t have to go : ). I’m gonna live until I die but, given that I’m walking around with a broken hip, glued together by dead tumors and scar tissue, I’d rather not tempt the fates by landing wrong.

IMG_4009

 

 

It was a lovely time that taught me once again that the beginning, the middle, the end… is love. So, once again, I am grateful… for the time I’ve been given, for the love I’ve received, for the life that I’ve lived.

And I am full of hope… for me… and for you.

 

 

IMG_4024

 

 

– I just saved you a bunch of money…

I just had my 2-yr anniversary of NED (no evidence of disease) after my terminal diagnosis of Stage 4 cancer. Yay! So I asked my oncologist at what point I could think about not taking Herceptin and Perjeta every 3 weeks. They had told me “for the rest of my life” but that was back when they thought I had less than 2 months to live. Those infusions cost the insurance system $20-25,000 per infusion! I’m one of those who gets more than I give to the insurance system and so feel a little responsible to try and save when I can. (Thank you, by the way, to all of you who contribute to my healing by paying premiums when you may not use them. Hopefully, karma will reward you when you need it.)

Plus, I’m feeling cocky… I actually feel like I got this… like “the snarling wolf” might actually be dead. OK, not cocky enough that I will just walk away right now from immunotherapy, but I want to plan. I don’t want to be chained to my chemo port forever. I kind of thought that maybe she’d say I could quit after 5 years but that 3 weeks is the only approved frequency. I didn’t know what the research showed. Turns out, there really is no research that corresponds to my case, I’m in uncharted waters, I’m a sample size of 1, I’m supposed to be dead, twice now, not NED. She suggested we go to every 4 weeks, instead of 3, and continue to monitor. Hopefully, if the wolf awakens, I could still tiptoe quietly and get it back to sleep.

So, we’re going to try weaning me off. On the way home, I did the math in my head. If I actually go once a month, that’s 12 treatments a year, instead of 17+. That’s 5 extra days per year of my life I get back! And, that saves you, the premium payers who invest in my health, about $120,000 a year! Not insignificant. You’re welcome. : )

… and, again, thank YOU! The bad news is that I’m still costing you over a quarter mil per year. Am I worth it?

Now we just have to figure out how to cap the outrageous costs of pharmaceutical therapies and insurance premiums and stop funding corporate jets and executive yachts!

 

The Snarling Wolf

You don’t “beat” stage IV breast cancer.
The most you can do is grab the snarling wolf by the throat and hold it at arm’s length,
trying not to be intimidated by the fangs and the spittle and the intensity of its desire to rip you to pieces.

If you’re lucky, you temporarily tame it, or it may tire itself out for awhile,
but you are always on your guard, knowing it will eventually awaken and attack again.

Right now, he is snoring softly at my feet. Be vewy, vewy qui-yet.
 

 
 

– Bedside manners 101

I wish that I could teach a class that all doctors were required to take in medical school…. Bedside Manners 101.  You could all help me teach it, I’m sure. The lessons are simple, but they seem to elude so many of them…

1.) Listen to your patient. They know their body better than you.
2.) Cancer (and many others) is a devastating diagnosis. Chill out and find your empathy.
3.) There are such things as miracles that defy the odds. Balance your need to help your patient know what to expect with communicating the hope of the outer range of what is possible.
4.) Empower your patient to take charge of their healing. You are only a swabbie. Your patient is the captain of this ship.
5.) Talk in plain language. Jargon that is second-nature to you may be new and frightening to your patient.
6.) You are not God, so don’t act like one. Be sensitive to the fear and awe some have of you. You can create a self-fulfilling prophecy when you tell people they will die.

I once had a radiologist gleefully exclaim that she was right!!! That the mass WAS cancer and I could have that mastectomy after all, as though it was the best news I could have received. Except that previous biopsies had “shown” that it wasn’t cancer and I had gone into her office just to confirm that. She was right, the others were wrong, and she was beside herself with pride. I had had no plans of getting a mastectomy, this was hardly good news, I was devastated, and I wanted to slap her for her insensitivity. There’s a reason radiologists don’t normally talk directly to patients. They should still have to take my class. : )

When I was diagnosed with Stage 4, the oncologist with tears in his eyes, said there was no hope for me. My son was in the Amazon on a survival semester and he said I needed to send a helicopter into the jungle to get him so he could say good-bye. “But, he has two more months in his program!”, I exclaimed. “You will not be alive in two months”, he said. That was October, 2012… 3 and a half years ago.

I went back after I came through the fires of hell, eight months later, and damn… I looked good! I was walking again and feeling good. I couldn’t wait to see how happy and surprised he would be. I had moved back to Colorado and I needed an oncologist for my ongoing immunotherapy infusions. I didn’t have a lot of choices… he ran the only clinic in town and that was a two-hour drive away. He was a cold fish and, as the conversation went on, I realized that he was irritated at my survival. My very existence was an affront to his ego… proof that he’d been wrong. Then he told me that I could not do my naturopathic protocol if I wanted to receive treatment from him. I said, “How the heck do you think I survived against all odds?” and walked out. I now drive an additional half hour each way to get my immunotherapy from an integrative oncologist.

Dr. Doomsday wasn’t necessarily wrong in his assumptions. I had tumors everywhere and there isn’t a doctor I’ve met that hasn’t shaken their head incredulously at my survival and recovery. I actually think I owe him a debt, possibly my life. See, he pissed me off when he tried to take away my hope. I thought to myself, “Oh, yeah? I’m not buying into that crap. This is not how my story will end. I’ll show YOU!” I’ll never know, but I wonder if he had not delivered such a dire prognosis in such extreme terms, if I would have simply and silently died?

The oncologist that worked to save me later admitted that she thought I had about two weeks left when she first saw me. The difference is that she didn’t tell me that until after I was NED… a day she never thought we’d see. She never told me how serious it was, just that we’d do what we could and encouraged me to hope and to fight and to do all the naturopathic things I wanted to.

I am relating this to you because doctors probably never will take that class on Bedside Manners. Doctors are a valuable tool in your toolbelt, but YOU are the master of your destiny. No one will ever care about your survival more than you. It is up to you to find out what they think, do the research, process it, and figure out what YOU think. Stay in touch with your body and your feelings and honor both. Your body is trying to heal from the toxins in our environment and the ones times we might put in to fight this disease. It is SOOO important to be loving and kind to your body… to detoxify and nourish it and support your immune system. Get in tune with your higher healing self. This is a voyage of self-discovery… embrace it. Surround yourself with loved ones that believe in you and get rid of energy vampires. And never, ever, ever let a doctor with bad bedside manners or anyone else snuff out your hope or belief in yourself. You got this…

At any given moment, you have the power to say,
this is not how the story is going to end.
— M.H.S. Pourri

– Cancer IS a Gift!

I believe that everything happens for a reason.
People change so that you can learn to let go,
things go wrong so that you appreciate them when they’re right,
you believe lies so you eventually learn to trust no one but yourself,
and sometimes good things fall apart
so better things can fall together.
― Marilyn Monroe

Some people say that cancer is a gift. Others respond vehemently that it most certainly is not a gift… that a gift is something you would give to someone else and that we wouldn’t wish this on anybody.

For me, cancer has been a gift. First of all, if I don’t see it that way, I can’t get through the day(s). This better damn well have some good come from it, right? So maybe I’m just rationalizing it. But my life view is that life is a gift and that every experience we have is to be savored and learned from… even, and perhaps especially, death.

It is so tempting to think that everything happens for a reason. I believe it does. That doesn’t necessarily mean that there is a mono-deity calling all the shots, planning every little thing. What it means to me is that when something happens to me, I’m going to MAKE it mean something. God helps those who help themselves, right? I’m going to learn whatever that experience offers. I’m going to make lemonade when life gives me lemons. And then it will be a good thing… I will have made it so.

One gift that cancer has given me is that I now know that I am a badass… with reservoirs of strength that I could never have imagined I had. Another gift is the revelation that more people than I could ever have possibly imagined love me… with an unbelievable intensity. And the knowledge that love is the most powerful force in the universe.

Perhaps the most important gift is that I have found my voice. All my life I just wanted to be understood. It’s what we all want, isn’t it? And through blogging and posting, I’ve been able to reason out and articulate my feelings so that I could understand myself and all of you have been so instrumental in that quest by providing your own insights, feedback, support, and love. Not only do I feel loved, I feel understood… for the first time in my life.

Perhaps the greatest test for whether I feel cancer is a gift came when a friend posed the question… “If you had the chance to go back to pre-diagnosis, and not have the cancer, certainly you’d choose that?” I was amazed as the realization dawned upon me and I answered, “No, I wouldn’t choose to not have had cancer”. Knowing what I know now and having made it through the darkness several times, I can’t imagine going back to the person that I was then. What a ditzy airhead that woman seems compared to me… the fire walker. I wouldn’t choose to go through it again (although, being stage 4, I most likely will go through it again). But I wouldn’t now choose a different path to be where I am now. I want to be who I am now. Even if it means I am dead soon. Crazy? Obviously, I’m not looking forward to the day that it comes back and the gates of hell open once more but, hey, denial has gotten me this far.

How about you? Imagine the worst thing that happened to you, even if it wasn’t cancer. How did it shape you? Do you appreciate the part of you that came out of the darkness? If not, maybe you didn’t learn the right lesson? Maybe this is a realization we can all apply to help us have no regrets. To help us accept and love who we are, warts and all, and to harvest the good out of every experience. I mean, we’re here now, why not make it count?

I’ve lived an amazingly wonderful life. And I’m kinda excited about what’s next. Because my healing journey has opened my eyes and heart to a spiritual awareness of the simultaneous permanence and impermanence of things. Life as we know it is impermanent but the atoms that combine in so many different ways to create the hologram of our perceived existence, are the same atoms that were created in the Big Bang and will recycle to create another hologram.

The only reason I am fighting so hard to buy some time in this incarnation is for my son. I’m not ready to stop nagging him yet. Hahahaa. No, seriously, my love for him will not die when I disincorporate but there is still so much love to lavish on him here. And how cool would it be to sing a grandchild to sleep in my arms? And how much cooler of a mother and a grandmother will I be because I’ve been on this journey with cancer?

I am deeply reminded that our life’s journey is a gift,
not a given, and that we can never truly know
how long the journey will last. All we can do is decide
how the journey unfolds

– Sonia Choquette

 
 

– The Graceful Warrior

 

Grace is the breath of God – an invisible essence beyond intellect that moves swiftly amongst us. 

Grace is immediately accessible to you and everyone around you –

through humility, devotion, and the courage to follow divine guidance.

— Caroline Myss

November, 2012

I walk the path of the warrior. I do not accept that I will die from cancer anytime soon. It doesn’t matter what others tell me. I have my own truth which I must live. Or I will die. Spontaneous healing happens. Miracles in medicine are being discovered everyday. We each must find our own path. But it is clear that we must not give up… or is it?

I am fighting the good fight. I am cleansing my body of toxins and providing it with nutrients and anti-cancer remedies, both naturopathic and toxic modern medicine. I am exploring my emotional landscape now as my primary unexploited weapon. And I become increasingly less comfortable with the metaphors of war.

I do believe that my inappropriate handling of emotional stress contributed to cancer returning and ravaging me. I think that my innate tendency to control my world is part of that stress. I think about acceptance and grace and surrender and how to incorporate that seemingly opposite concept into my fight. It’s like the Buddhist paradox… in order to achieve enlightenment, one must give up all goals. Yet achieving enlightenment is a goal in itself and requires commitment to that goal.

So, how do I eliminate stress and my control-freak tendencies that feed cancer while being determined to rewrite my own destiny by kicking cancer’s ass? How do I incorporate grace and acceptance that my path may not lead to survival and achieve serenity from that surrender into my fight for survival?

Thoughts and emotions are part of the physical landscape and they are crucial to the healing process. I’ve tried to get tough with my cancer. I’ve tried to direct anger towards it. But it feels wrong. Anger is a toxic, negative emotion. Cancer feeds on negativity and toxicity. And, frankly, I am grateful to cancer for what it is teaching me… again.

Five years ago, I focused on kicking cancer’s butt. I took care of my body. I made sure everybody knew that I loved them. I focused on beauty. I focused on sending love to my breast. She was scared. I wrote her a love letter. I wrote my cancer a letter and proposed a deal… if it would back off, I wouldn’t attack it violently.

I had thought about giving up, leaving it to the Fates, the doctors, God, anyone… as long as I didn’t have to take responsibility anymore. It was bigger than me. But I thought, if I give up, then life has no meaning… it has all happened for nothing. I’ve always envied those with a sense of purpose, those whose destiny is clear. This, apparently, was my destiny, and I needed to rise to the occasion. I decided that my strength was greater than my fear and that my strength would heal me.

But I had that mastectomy. And that cancer didn’t go away. Now, 5 years later, against the odds, I have Stage IV cancer that the doctors say will kill me. I look for answers, all day every day. And again I wonder… what if the only answer is that there is no answer? That this just happened because life’s a bitch… and then you die? What if my legacy is not to teach people how to fight? What if my legacy is to teach people how to surrender and how to die with grace?

Naaaaahhhh!

Sorry, but it makes me giggle. I really do need to embrace and incorporate grace. But who I am is a fighter that makes life on my own terms. I must fight stronger and harder than I did five years ago. I am not ready to surrender. I have served cancer an eviction notice as an ironic swipe at my stress over the last year. I posted it on my mirror to look at every morning. I will do everything in my power to get it out and try to keep it from coming back. I will continue to be tough and committed and I will not yet entertain the notion that I might not prevail.

And I will meditate on grace and love and beauty and light and use them to vanquish my foe in ways I didn’t understand then.

I will walk the path of the graceful warrior.

 

The warrior who trusts his path

doesn’t need to prove the other is wrong

 — Paolo Coelho

 

– When tears turn to giggles…

I was still in a daze after Dr. Cheng’s proclamation of doom. After a bus ride of staring out the window at the rain and crying uncontrollably, I pulled myself together for my afternoon appointment.

The waiting rooms at MD Anderson always have several jigsaw puzzles in varying states of progress. I quite liked it… walking up to a puzzle that actually had a solution was very comforting. Plus, it took your mind off of what you were waiting for. The waiting areas were also filled with people who were fearful of what was facing them. Usually, I tried to infect them with my endless enthusiasm, but I appeared to have run out.

There was a cute, older, African-American couple holding hands. I tried to guess which one was the patient. She was stoic, but he was definitely her Rock of Gibraltar…. it must be her. I smiled at them and turned to a puzzle. It worked for a few minutes, then the memory of Dr. Cheng’s face appeared. All the ways that I could feel sorry for myself streamed in. It was a pitiful, pathetic, ‘poor-me’ party. That lady had her sweet husband to give her strength. Where was my Rock?

My eyes teared up and the puzzle in front of me was a blur. Jesus, get it together! What if they came and called me right now? What if someone sees me? I choked back the desire to sob and shake. Looking around, I saw no Kleenex. Seriously? I sat perfectly still, pretending to study the puzzle, blinking methodically to evaporate the tears before they fell. Plop! One fell on the table beneath me. Plop, plop. Damn! My nose was starting to run. I snuck a little sniffle.

A white blur appeared from the periphery in front of me… a hand holding a tissue. I looked up gratefully at the woman who had been holding hands with her husband. Her soft, brown eyes fixed mine with a look of such compassion that I smiled and a little sob escaped.

As I took the tissue, I noticed it was about 3 feet square! What the hell?

“It was all I could find. I went into an exam room to get it for you,” she offered apologetically. It must be one of those liners they put on the exam tables to keep things sanitary! I burst into laughter and, relieved, she joined me. I stood up and hugged her.

A hug and a giggle… that’s what I had needed.

Aren’t people lovely sometimes?

 
 

– Meditation, Mindfulness & Healing

When I was diagnosed in 2013 with leptomeningeal brain metastases, I was told the average survivability was 2.8 months after diagnosis. I had just lost a friend to the same rare diagnosis a month after hers. Western medicine did not have much to offer me and so I resorted to three naturopathic therapies… removal of a root canal tooth, high doses of CBD oil, and intensive meditation. 6 weeks later, four of the nine brain tumors were gone without a trace. Two previous posts, Root Canals & Cancer and Cannabis & CBDs discuss the former two methods, this post addresses the latter.

Our body is made up of physical building blocks. Our consciousness can be measured, in part, by the combination of those physical building blocks, by the chemical processes that occur within and between those building blocks, and the electrical energy that results from those chemical processes. The ‘metaphysical’ is what we don’t understand about that. As I am fond of saying, “magic is just what science hasn’t figured out how to explain yet.”

Just because we don’t have all the details mapped out, doesn’t mean the magic of the mind-body connection isn’t real. I do not, for the life of me understand how a cellphone works…. the fact that I can watch movies on this little device astounds me. But that lack of understanding does not interfere with my acceptance of the technology. If you sent me back a couple hundred years with this technology, I would probably be burned at the stake for being a witch.

Many things that I cannot explain scientifically have happened to me in my life. By accepting these gifts anyway, I am able to receive their benefits. And science is now actually making breakthroughs in understanding the healing properties of the mind-body connection. The healing properties of meditation is being studied and documented with exciting results:
• Telomeres are those little “legs” on your chromosomes. As we age they shorten and shortened telomeres are associated with the rate of aging as well as to the development of cancer (1). Basically, you want your telomeres long for as long as you can. Meditation has been shown to slow telomere shortening (2).
• A deleterious relationship between chronic stress and the initiation and development of cancer has been demonstrated (3,4). Meditation reduces stress and the presence of stress hormones (2).
• Meditation has been shown to be very effective in the modulation of pain (5).
• Meditation affects brain structure and activity related to depression, anxiety, attention, memory, and cognitive flexibility.

I’m resting my case on the benefits of meditation for cancer patients. I’ve given you a starting point to do your own research and I’ve provided lots of references at the end of this post. I’ll switch my focus to telling how I use meditation.

As a cancer patient, you actually have many opportunities to meditate… waiting in the doctors office, waiting in a metal tube while they scan you or treat you, waiting while the poison drips into your body, during yoga or exercise, writhing in pain, etc, etc. A simple one I can use anytime, anywhere is “Inhale, I heal. Exhale, I cleanse.” Waiting for a traffic light, waiting in line at the post office, getting an MRI… I fill myself with healing breath and I exhale the poisons that are standing in the way of my body healing itself… over and over… until the car behind me starts honking. : )

I try and practice mindfulness in everything I do. I look for beauty and when I find it, I inhale it deeply into my being, imagining the happy feelings it generates to be starting a chain of healing reactions, activating my cancer-killing T-cells, killing cancer, and re-energizing me. If life gets particularly shitty at some point, I frantically search my surroundings for something beautiful… if a loved one is nearby, swoosh, all that love for me gets sucked out of them and into me (I’ll return it later). Sometimes the beauty can be in the image of the cute old lady across from me asleep in her treatment chair who hasn’t realized she put two different socks on that morning. Amplify the smile that brings to your face, imagine it as healing energy that you can plug into that courses through your body. When I focus on beauty, ugliness fades away.

No matter what it is, I bless any substance, medicine or treatment therapy that I receive, and thank it for healing me, infusing it with confidence, intention, and gratitude. We are 70% water, if our thoughts and emotions (or electrochemical energy, if you prefer) can influence the molecular structure of water (6), it can surely influence the medicine coursing through our veins.

While getting treatment or during yoga, I imagine inhaling a fine mesh fishing net into my body that fills me and reaches to my farthest extremities. As I exhale, I gather the net, gathering the cancer within it, tugging gently at the stubborn areas so as not to tear a hole in it. It takes several breath cycles to gather it in from each extremity and my head. As it nears my mouth, I expel it and the cancer in one large exhale. I practice this visualization whenever cancer gets me down or whenever I remember to practice mindfulness.

I don’t take pain medication if I can help it. Whenever I have, I have regretted it. To help my body heal, I need to hear what it is telling me. I have withstood a lot of pain in my life and have learned to leave my body when it gets too intense. Or I walk right into the pain and through it as I learned in natural childbirth. Face it, breathe deeply, fortify yourself, and walk straight towards it, not stopping until you are through it and it is past you. The more you tense up and tighten and fret, the more it hurts.

I happened to be reading two books when I got the diagnosis of leptomeningeal metastases in my brain…. Remarkable Recoveries and Radical Remissions. The books were filling me with awe… everyone who had survived against all odds (not just cancer or even illness, but also horrific accidents) had at some point made the decision that they were going to live, in spite of what everyone said. They didn’t just say it… they believed it with every cell in their body. Then, I read an article by Dr. Bruce Lipton on the concept of a “nocebo”. A placebo is something that has no obvious physical mechanism for working, but does, due to the belief that it will. A nocebo is the opposite… the belief that we do not have the ability to heal ourselves. It comes from years of being convinced by the western medicine establishment that they, and only they, hold to key to our recovery. Dr. Lipton says that you can reverse this “programming”, but only on the subconscious level, by achieving an altered state through meditation.

Damn, it all made sense. And I had nothing to lose. I was so lucky to be in Hawaii, living on the beach I grew up on, when I was going through this existential hell. I was alone and everyone thought I was crazy for being alone during this time (especially since my “job” was watching and waiting for symptoms such as seizures and losing consciousness). But I felt it was best to focus all my energies on healing myself… that was my “job”. I spent hours, every day, floating in my beloved bay, reprogramming my subconscious, praying to the Kahunas to spare me so I could return to the islands, casting my internal fishing net over and over, and “scrubbing” away my brain metastases with little mindful scrub brushes.

So, by now, you are possibly shaking your head at what a nut case I am. Perhaps. But I’m a nut case who is alive! And nobody thought that I would be or that it would be possible for 4 of my tumors to disappear without a trace. And I know you actually think I’m kinda cute with all these weird ideas of mine. And I know that you are toying with the idea of practicing mindfulness and meditation yourself, if you don’t already.

But perhaps you feel sheepish and don’t know how to get started. If my visualizations don’t speak to you or if you feel you want someone speaking in your ear, check out your local library for CDs of guided visualizations. Check out YouTube for “guided visualization, cancer, healing, mediation”. Check out this book, Mindfulness-Based Cancer Recovery or this DVD by Dr. Deepak Chopra, Return to Wholeness: A Mind-body Approach to Healing Cancer.

“Scientists have proven it is aerodynamically impossible for the bumble bee to fly.
Its body is too heavy and wings too light.
Good thing the bumble bee can’t read – it just flies!”

References:
1.) Telomeres, lifestyle, cancer, and aging
2.) Can meditation slow rate of cellular aging? Cognitive stress, mindfulness, and telomeres
3.) Impact of stress on cancer metastasis
4.) Stress and breast cancer: from epidemiology to molecular biology
5.) Brain Mechanisms Supporting Modulation of Pain by Mindfulness Meditation
6.) The Hidden Messages in Water

 

Disclaimer: Nothing contained on this website should be construed as medical advice. I am not a doctor. I am a Stage IV breast cancer thriver who is currently NED/NAD and simply sharing what I did, and do, and why. Please research anything I share to determine if it is a good path for you. Bless you all on the path you choose.

All original content contained on this web site, I’m gonna live until I die, is copyrighted, 2015,2016 Kaiulani Facciani.

Older posts «

Fetch more items