Dreaming of sausage, again (thank you Bill Henderson!)

Two years ago when I culled out certain items from my cupboard, #1 - I drove myself crazy worrying about it

#2- I would do cheese one day, gluten the next, etc

#3 - I was annoyed that I could only eat veggies

This go around

#1 - I know that when I am feeling crazy about what I am or am not eating it means that I am tired and the pain body wants to be fed. (Thank you Eckhart Tolle!)

#2 - I started saying goodbye to meat with my amazing meal of Maigret au Canard, goodbye to gluten with a perfect challah bun from Zingermans, goodbye to egg with one of our perfectly poached eggs on top of arugula, goodbye to alcohol with a bottle of Pinot at the Grand Hotel in Macinaw - I also know that this is not forever, it is for right now. I am sticking to a vegan, gluten free, raw as much as I can, diet. I have broken myself into it - and I am dedicated to do it until after Christmas and test results trickle in from around the world.

Thank you for your support.

#3 - see #1 above.

If you are curious, I am using Bill Henderson's book. I found it before my autogenic transplant and it was partly what helped tweak that option into favor. Thank you Bill Henderson for all that you do!

It is peaceful here

When people ask me how I am feeling, I can honestly say - peaceful and calm. "Oh really?" - the doubting tone is unmistakable. So here is my answer.

#1 - I wrote a book* about not feeding Fear - so therefore I am just practicing what I learned.

#2 - I feel really present in the now - and it is wonderful.

#3 - I try to tell my world how grateful and honored I am to have them in my life everyday - I have nothing hanging over my head that niggles, or that needs to be cleaned up, I already did that (again, I wrote a book* about it).

So, as I said, it is peaceful here. Thank you for being part of my magical life. Namaste.

*If you haven't read it, here is my shameless plug, you should - this book rocks.

Journal: Thank you for using the term mortality rates

Summary - PET CT showing hot spot activity, 2 years out from an autogenic transplant and radiation. Not possible to do a biopsy to verify that is what it is because of where the hot spot nodes are located. So we are in the collecting information stage -

Bone Marrow MD in the morning - giving me the run down that you WANT to have a graft vs host disease (GVD) when you do the allogenic transplant (bone marrow from someone else). This happens 1/3 of the time with a sibling match and 2/3 of the time when it is not a sibling match. Of that portion of the time that you get GVD 1/2 of it is moderate and 1/2 of the time it is severe. Since you only want to have moderate GVD, the higher chance of severe in the allogenic transplant is not ideal - but then you do have a higher chance of getting GVD as well.

Then we drove into Karmanos to meet the MD who is doing clinical trials. He ran numbers for us. The only thing that is proven to cure what I potentially have (thank you for you - you bright white lymph node right next to the biggest blood vessel system in my body) is an allogenic transplant. All of the clinical trials are ways to push back that potential because some patients don't want to do it because of the mortality rates.

(Did she just write the phrase mortality rates?)

Yes, yes she did. Because the doctor said it.

What no one had yet told me at the U of M is that there is a mortality rate associated with allogenic transplant (perhaps due to the severe portion of that 2/3 from a nonsibling match). 25-50% depending on a whole bunch of factors.

So that is why people bounce between clinical trials for years and years, fudging along with 1 year on one drug, 2 years on another drug, etc...because even if you get a response from those clinical drugs - the medical world does not congratulate you and tell you that since your scan is clear that you are all done. Instead, they congratulate you and tell you that now it might be time to bite the bullet and do the allogenic transplant.

What a world we live in.

Alternative MD says it is an infection, not a reccurence

"I got my PET-CT results scan back yesterday." Dr. Turtle has his back to me as he is folding towels in his treatment room. "Oh yes, what did they tell me."

A lump grabs my throat and I am unable to talk as I start to cry. "They told me...they said ... there are nodes in my belly that are lighting up the scan and that therefore the disease is back." I gasp for air. Dr. Turtle looks at me. "That they are in my spleen, my stomach, some near my heart. But apparently they are too small for them to take a biospy of, but it is what they think it is. They want to sign me up for a clinical trial."

"Hmmmm." He walks over to me. "You have an infection. I need to increase your virus drops. It is in an infection."

Immediately, the lump drops from my throat, I feel calm, and I stop crying.

What? How did that happen that I just stopped being upset? Just like that?

"Wait, what? It is an infection?"

"Yes, hold on." He holds out my left arm and touches my spleen. He pushes down on my arm and is obviously muscle testing me. "Yup, it is an infection."

Oh god, what am I going to do now?

"Well what am I going to do now?"

"Whatever you want to do."

I stare at him, neither one of us is moving.

"I tell you this though, the doctor in the hospital has to tell you that it is back or he will have liability. Because if they don't know and if it is, than they are in trouble. So they have to default to turning you into a guinea pig for their trials."

I cannot handle doing this again, having the two sides go back and forth against each other - tearing me in two with the conflict. I need to be calm and choose one path. Not have this debate of which path to choose start all over.

"I tell you this, when you are full of worry, just say to yourself this mantra. 'I am sorry. Please forgive me. Thank you. I love you.'"

"Who am I apologizing to?"

"You are apologizing to your body and you are sending the rest of it to Jesus, or God, or the Universe."

"Okay."

I am sorry. Please forgive me. Thank you. I love you.

-----------------

"So you realize that Dr. Turtle has a vested interest in you not believing what the hospital doctors tell you because then he is setting himself up as the only person who can help you."

"I know Dad, that is why this whole thing is so nuts. We are back to the both sides with their vested interests issue."

Here I am again, what in the world does this mean?

"Hold on, your Mother wants to talk to you." The phone shuffles as it is passed over.

"Hello dearest."

"Mom, I can't do this again, this one side vs another side. This alternative vs conventional. This is too much."

"I hear you. I think that you should think about what the Universe is trying to teach you about being in the middle of this dialogue. Because here we are again."

"I mean, if Dr. Turtle is right and it is just an infection. Than what does that mean? I mean they haven't done a biopsy and..." as I take another breath I start to cough.

My cough is deep, raspy, and full of phlegm. I cannot speak.

"Oh sweetheart, you have a bad cough."

"Well," I cough, "as Dr. Turtle told me, I have an infection."

"Oh god, of course, of course. You have an infection. Of course you do!" She starts to laugh.

"I mean Mom, at this point, what else can we do but laugh." I laugh as well.

(The names I use are the same pseudonyms I used in my book, I Dreamt of Sausage. Thank you for reading this as I continue to flush through all that is happening to me.)

Reading a gun magazine while waiting for PET-CT results

"We were just catching up on our gun magazine reading. We don't get the NRA magazine at home and it is fascinating. Did you know there is an ejector you can buy the propels birds into the air so you can shot them? Kindof like a trampoline for your pheasant." The doctor sits as I rattle on.
I am babbling and nervous. Take a breath.

I pause, take a breath, and let him say hello.

Dr. Varpas looks across at me, "You reading a gun magazine makes me nervous given what happened last week at Hopkins."

I look at George, "What happened last week at Hopkins?"

"A patient shot his doctor when he gave him bad news."

Oh shit, I knew it!

I look over at Dr. Varpas, put my hand over his on the desk, and ask him, "Are you going to tell me bad news?"

"Well, we walked down to radiology and looked at the scan results. It looks as though there are several hot spots in your mediastinal area near your vena cava, some near your spleen, a few next to your heart, and some along the central line."

I reach over and grab George's hand and hold tight.

"I am fairly certain this is recurrent Hodgkins."

!!!

Focus, ask questions.

"Do we go in and do a biopsy?"

"They are not in a good spot for that. They would have to open up your whole belly and they are such small spots it is very unlikely that they would be able to identify which ones to take. But there are choices. There are several clinical trials that look promising and that some of them have created full remissions. The first one is B*****m. It is an immune therapy drug."

I reach down for my purse, "Should I be taking notes?"

Dr. Varpas reaches for a paper from the printer over the desk. "No, I will write these down for you."

"What is an immune therapy drug?"

Will I lose my hair? It is growing back so beautiful!

You are so silly, hair is not the end of the world.

"Does it have the same side effects as chemotherapy?"

"Oh no, the side effects are very benign. You won't lose your hair or anything. Unlike chemotherapy that goes in and messes with your DNA, immune therapy target biological markers on the specific tumor type."

Why didn't we start with that one?

Hush, that doesn't help us now.

"There is one that I just heard about 6 months ago that is happening right down the road in Detroit." Dr. Varpas adds another name to his growing list as he thinks. "This one you have to have the CD25 marker on your B cells in order to qualify. Let me see." He trawls through my pathology reports on the screen.

I look over at George. His face is tight.

"And of course, there is always the allogenic transplant. Do you have any siblings?"

NO FUCKING WAY!

Hold on, you aren't there yet. These are just the options.

"I have a sister."

"Have you ever done a screen to see if she would be a match for you?"

"No. But my blood type is A and she is an O."

I don't want someone else's bone marrow! I like being me!

Hold on, we aren't there yet. That is only one option.

"Blood type does not make any different, did you have a chance to talk to Dr. Jarvis about allogenic tranplants? What their rate of success is with someone like you? Because if the rate of success is only 10%, than you might as well not even..."

"Not even bother, right."

Thank god, he agrees with me.

"So there are also other chemotherapy drugs that you could do..." His list grows longer.

"Are these pills? infusions?"

"Most of them are outpatient, some of them are pills, some of them are infusions."

"Do you take them once a month, once a week, three times a week for a year, five years? How long will I be on these?"

"Well, each one of these is different."

"Are all of them just a lead-in for an allogenic transplant?"

"Well, that is a great question. It depends on how things go. If you are able to have a complete remission with one of them than you are all done. If not, well, let us see how things go. I am going to call the center in Detroit and see whether or not you would qualify for that trail."

"So that is what you are leaning towards at the moment. The first clinical trial option?"

"Yes, because it does not disqualify you from doing anything else. If you start with the allogenic transplant, you take the other options off the table."

I look over at George and turn back to Dr. Varpas. "So George is in his last year of residency and we are in the process of signing a contract with a group north of New York City. Can we start something here and have it continued there?"

"Oh yes, you shouldn't change your plans for this. We can work something out."

I want to ask him how this happened? Why this is happening? What my chances are! What this means for me long term!

He doesn't know, he is doing the best he can.

"So while you make those phone calls what can we do?"

"Nothing, just wait to hear from me." Dr. Varpas stands and reaches out with his arms.

I stand and reach down for him.

This hugging business, such a double-edged sword.

(The names I use are the same pseudonyms I used in my book, I Dreamt of Sausage. Thank you for reading this as I continue to flush through all that is happening to me.)

My sister's review of the book

Earlier this week, I tweeted the following: Buy my sister's amazing book! http://tinyurl.com/235prmx -- and read all about her amazingness here: http://corinnaborden.com/ Richard, the kind soul that he is, responded with an email: “write a review of your sister’s book and I’ll put it up on my blog.”  Thank you, Richard.  So I sat down to write.  And sat.  And put a sterile sentence down.  Then cried a little.  Then sat some more.  Then gave up.

My older sister (by two years one month three days) was diagnosed with stage four progressive Hodgkin’s Lymphoma a year and a half after her wedding, one week before her 30th birthday.  She was living in Ann Arbor, trying to figure out a life for herself while her husband underwent the modern-day torture of a urology residency.  For almost a year, she had been suffering excruciating abdominal pain that no doctor could diagnose until an allergist noticed inflamed neck lymph nodes and sent her in for a full biopsy a few months after her needle biopsy had come back negative (note to readers — needle biopsies sometimes get too few cells and miss the cancerous ones).

Her birthday sometimes falls on Thanksgiving, and the year of her diagnosis, her 30th birthday year, it did.  My parents and I had already planned to come to Ann Arbor for Thanksgiving turkey and birthday cake, and still we came.  Mom and dad showed up on Monday, in time to support Corinna and her husband for the first chemo treatment on Tuesday; I arrived on Wednesday to a house filled with unhappy parents, a husband beside himself with worry, a puking sister, and a dog and a cat so stressed by the human emotions that they made everything worse by trying to make everything better.

For the next six months, Corinna fought cancer tooth and nail with chemotherapy and acupuncture (helps with the nausea).  It didn’t work.  Then she gave up for a little bit.  That didn’t work either.  Then, furious with the Western establishment that poured toxins into her body to “heal” it, only to have the body remain unhealed and more sick from the toxins, she explored different options — Vitamin C infusions, energy treatments, cleanses, sweat boxes etc.  That helped her emotional transformation to take place, but didn’t work with the cancer cells.  So, back to the Western world and the University of Michigan cancer center, which, so far, has worked.

I revisited this review when I told Corinna that I was trying to write one and failing miserably.  She suggested that I write what I was going through writing the review — which is an apt description of her book.  It is a book written by a brilliant, articulate woman in her early 30s about what she went through during her two-year “cancer reeducation program.”  Corinna takes her journal entries and a little of the fact story outlined above and then integrates her own voices into the story.  Not thoughts, but voices.  We all have them.  Fear, who injects worry and panic into everything.  Peace, who mediates.  And then of course our own personal dialogue.

Yes, I Dreamt of Sausage is a cancer memoir, but it is also a reflection of a woman who had to learn to integrate her voices with her body in order to ultimately heal.  Read this book.  It is a story of courage, self-exploration, curiosity, strength of will, resiliency, and healing.

I Dreamt of Sausage, by Corinna Borden, can be found on Amazon.com or CreateSpace.com.

Book Vision

The trend of selling one more book than I did the day before has continued unabated, since it started in June. Nearly one hundred fifty books are selling a day during the month of December. The critical acclaim is astounding in its passion and volume. I am thrilled by the number of people who have expressed to me the book made them rethink their own lives and passions. I have been asked to speak about the book several times over various media and I look forward my little book continuing to impact the world in 2011.

I am selling one more book today than I did yesterday!

OH MY GOSH!! On Tuesday, I walked the dog and thanked the Universe for the success of my book - then I said "I am selling one book today." NOT believing a WORD when I said that - but then I thought of Louise Hay and that it is just as important to say the mantra and filter out the emotional baggage when saying it than not to say it at all. So I kept on saying "I am selling one book today, thank you for the sale of one book today." To give some context I had sold 3 so far in June.

That night, I check the sales and - I HAD SOLD A BOOK!

On Wednesday, I tweeted to thank the Universe for the success of my book. Then I said, "I am going to sell one more book today than I did the day before." - and I check the numbers this morning - and I HAD SOLD TWO BOOKS!!!

So today, "I am selling one more book than I did yesterday. Thank you for the success of my book. Thank you for the sale of three books today."

Again, I say the sentence and my stomach flips and I know that I do not really believe what I am saying.

But, but, but - I am selling one more book than I did yesterday - thank you Universe for sale of three books today.

Go, little book, go! vs. Fear

corinnacover_front "Go, little book, go" - Chaucer begins the ending of Troilus and Criseyde - and as I sat to write the description of my book in the librarything giveaway, the line seemed very appropriate.

I was talking to an acquaintance yesterday about the book and he asked me why I wasn't sending out emails to everyone I know asking them to purchase the book and telling them it is the best book EVER. To which my shuffling reply revolved around the terms "self-aggrandizement" and "awkwardness," which is another form of FEAR.

There it sits, always at the freaking table. Thank you Fear, you are right - if I don't talk about the book than people can't tell me it is not good - they can't find the 3 typos I have found (so far). I don't need to push away the worry people will look down on me because I was not vetted by a "proper" publisher - if I don't tell anyone about the book, I am safe.

So that ends now. I am going to tweet EVERY DAY about the book. I am going to post to my Facebook page EVERY DAY about the book. I am going to give away 50 copies of the books to members of librarything this month and I am going to send out press releases (when they are finished) to at least 20 independent stores.

As I said in my talk at MSU, what do I have to be afraid of? a voice in my head telling me that it is not going to work? I don't think so ... Go, little book, go!

First Public Talk about I Dreamt of Sausage at MSU (part 1)

I was very lucky to have a wonderful girl with my video camera on me for the talk that I gave to Zaje Harrell's Health Psychology Class in February. I was really nervous and it felt REALLY good to realize that I can talk about the book and frame it within my own context. My miracle that day was that we went out to breakfast and I had buckwheat pancakes made from Mill Pond, which I had JUST visited. Wow.

Here is the link for the next four videos in my talk.

The book is ready!

After many many months of writing, editing, drafts, harassing friends to edit, copyediting, talking, etc etc. I pressed publish and it is done! Just in time to wrap up 2009. Well done me.

Please write me a review on the Amazon page, apparently that is what counts the most in the world of online sales. Otherwise you can purchase a copy of the book on CreateSpace (where more of a percentage of the proceeds goes to the Polly Hill Arboretum).