A wheatgrass machine sounds like a cow (und scan update, und A Course in Miracles...)

I know this sounds naive, but I have never stood next to a cow in the silence of a quiet field and listened to it tear up grass and chew. My first thought was, "that sounds like a wheatgrass machine," my second thought was, "maybe we should give nature first dibs on sounds - a wheatgrass machine sounds like a cow." 

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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.

"Life is too important to be taken seriously" - Oscar Wilde

I woke up with a tight throat on Tuesday, full of tears, and silliness. My pain body (thank you Eckart Tolle) in full feeding mode. Then Dr. Turtle helped me cut off the worry train at the station and ever since then I have felt great. Not just a little great - a lot a great.

AND yesterday, Ammaji sent me a gift to remind me that there is magic and miracles in this world. Thank you Ammaji.

Who knows what is going to happen with all that is going on. I am going to enjoy right now. After all, life is too important to be taken seriously. I choose to laugh.

Love to you all.

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.)

Journal: Why is the house still standing when I get "bad news"

You would think when returning from an appointment where they tell me I have, "many choices for clinical trials and there is always an allogenic transplant," that the news would filter through to my house.That I would not come home to the same magazine on the table, the same sock hanging flaccid and gray against the side of the laundry basket, or the same dishes in the sink. When I wake up in the middle of the night and realize that I can't breathe properly there would be a commensurate hole in the fucking house. That the moon would turn purple and emit sparks in honor of the occasion. I don't want to hear crickets outside, I want to hear jazz playing from the leaves. I want to have a choir of raccoons outside in military formation playing Mozart on their tails. I want to have the sky turn yellow and move closer. Instead, I lay here, the laptop glowing onto the same sheets I slept in last night, unable to face the idea of using the computer in the other room. I am the same person as yesterday, I had the same body yesterday morning, the same haircut, the same nose, the same smile, I just learned that there are small hotspots on the PET scan that could signify recurrent disease. Nothing has changed, everything has changed.

Limbo Land: aka scan results are ambiguous

Walked into the Cancer Center yesterday, which I now love - because I CHOOSE to, and sat down in the waiting room. And sat, and sat, and talked to a man next to me with MS whose wife was on her 4th year of treatment and he was so cheerful and wonderful, and sat. Then we sit down to hear from the doctor. But first the PA comes in. "Night sweats, trouble breathing, pain, fatigue?"

"Nope, nope, nopity-nope."

Does she know something about my scan that means I should be in pain? Do I feel sick? I still need to catch my breath going up the stairs, does that really count?

Calm down, deep breath.

I sit on the examining table and concentrate on looking at her hair as she palpates my neck and underarms.

She dyes it red, interesting.

She leaves and we go back to sitting. Dr. Varpas comes in and pulls himself to the desk.

"Well, I have been looking at the radiology report from your scan on Thursday. They seem to have some concern about the node that we noticed that is next to your vena cava, the other one near your spleen seems to be stable. But when I look at the larger one on the screen, it seems very faint to me."

My husband, in his white coat and scrubs, jumps in. "Yes, I looked as well and it has low attenuation."

The two of them look at each other. Dr. Varpas answers George. "Yes that is exactly it, it doesn't look like a node, the attenuation is so faint."

No reason to get mad, they just speak the same vocabulary. But I would like to know what they are talking about.

I interject. "What is attenuation?"

Dr. Varpas answers me. "It means that the node is not showing up very distinct, the intensity is not very high."

"It almost looks like bowel."

"Yes, I thought about that as well." Dr. Varpas turns back to me. "So I was thinking that we could have an endoscopy and they could do an ultrasound of the area and perhaps aspirate it while they are in there, it is right near your duodenum."

Here we go again.

"Well, I have some experience with endoscopies - I did several of them before I was diagnosed while the GI department was trying to figure out why I was in pain."

Dr. Varpas looks confused. "Oh really?"

George jumps in and the two of them go into hospital speak. "Hylar scan...HIPA...Endo...Fall 2006...pre-diagnosis." I tune out.

Dr. Varpas had never read my history on this, what the!??

Watch it.

I am glad that he is reading my medical history now, two years after we started working together.

Silence deepens in the room as Dr. Varpas scrolls through the dozens of notes and tests that I have had. He finishes reading and leans over in his chair, hunkered onto himself, his eyebrows furrow in concentration as he thinks, staring at the floor.

All of that brain power and experience devoted to me, wonder what he is going to decide.

"Well, I don't want to radiate anything unless we know that it is actually Hodgkins. Neither one of the nodes are in a place that is easy to get to."

George jumps in. "Couldn't you go through the ---."

"No, you would have to go through the liver."

"I have built a fortress around them!" I laugh.

Dr. Varpas smiles, "It has been over a year since your last PET scan, let's schedule one of those for three months out." He looks at me. "I saw all of the tests you did for your hormones. I know you want to get back to your life and put this behind you. I want to minimize the amount of radiation you are receiving and waiting three months would not change anything in terms of treatment, if we need to do that."

George leans forward. "If the scan came back positive, what would the treatment be?"

Whatever, that is a, "what if?" I don't listen to Fear in that form.

I tune out.

I should probably take this opportunity to apologize for being such a obdurate and obstinate patient when we first met.

Dr. Varpas finishes answering George, leans back into his chair, sticks his legs out, and starts gesticulating. "Though, I don't think you've got it. In my gut, it doesn't feel right. Just like when you came back from India and there was all of that PET positive activity in your gut. I feel like we are chasing scar tissue."

"Okay, three months and then a scan. Feels good, George?" I look over at George, he looks twitchy and unhappy.

"I would rather know what we are dealing with now, but I guess we have no choice." I hold his hand and squeeze.

Dr. Varpas stands up.

Time to say something.

"Dr. Varpas, thank you so much for all that you do for me. I know I have been obstreperous at times, and I apologize for that."

He reaches down and takes my hands in his, giving them a squeeze. "Oh no, it is my pleasure. See you in three months."

We walk out of the room behind him.

Here we are again, back in the world of limbo. I have three more months of not knowing anything. Three months of freedom and not feeding the Fear and living each moment NOW.

I turn to George. "I should make myself a crown and have Limbo Queen written on it. This whole thing is hilarious."

"Or something."


(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.)

Journal: Loving the Cancer Center

When I spoke at the Health Psychology class at MSU, one of the students asked me how it was going into the hospital, I made a joke about being Pavlov's dog walking into that building. I have spent the last week devouring the books of Geri Larkin, a Zen Buddhist monk/teacher/temple founder. She is funny, insightful, honest with herself and her readers, and I could not put her books down.

In a few of her books, Larkin mentions a Buddhist story about what to do when you are scared of the dragon - turn around, face the dragon, ask the dragon to open its mouth REALLY wide, and then walk into its mouth. This is the same idea as "whatever resists, persists." I touched on this issue in my book Journal entry on "Desiring Things to be Different," a sentiment Eckhart Tolle says is the height of insanity - why would I deny and argue against what is? Talk about creating stress for oneself.

So today, I am choosing to walk into the dragon. I am going to consciously think of all of the reasons why I am grateful for the Cancer Center as I walk in this afternoon to receive my CT scan results. (Even as I write that, I cringe at the name of the building - why can't it be known as the cell reeducation building - or the Health Center? As I have said before, everyone has cancer cells in their bodies and some people just have an immune system that can handle it!)

Okay, I am rolling my shoulders now - that was not helpful.

I am going to love the Cancer Center today when I walk in for my CT results. I am going to love the nurses, the pa's, the drugs that made me feel sick, the smell of the building, the fact there are no windows. I am going to love the blood draw. I loving my stomach feeling tight and high when I write this paragraph, I am going to love that feeling when I walk into the building.

Going to? Hmmmm.

Let me take a real step and make this happen now.

I love the Cancer Center and the people in it:

  • for showing me I am not the only one on the planet who suffers. Everyone suffers.
  • for teaching me labels are layers of bullshit we use to cover up that we are all God/Buddha/Love (whatever you want to call it).
  • for our marriage.
  • for giving me drugs that reeducated my inflammatory cells.
  • for doing the best they can with the information they have.
  • for working with survivors who don't always make it and still being optimistic and kind with every new person who walks in terrified.
  • for being patient and working with me when I was SO mean to them.
  • for giving us yesterday's walk, holding hands, watching the rosy sunset and the gold streaked clouds, on a perfect summer evening, with our dog.

Some nice person named the building the Cancer Center because they thought it would be helpful to have it so demarcated. They didn't realize they were sending out a potential prayer into the Universe. They were doing the best they could. So, I must concentrate on the people inside the building, not the name on the outside - (and now I start to laugh) - because labels aren't important, right?

I have a CT scan today

This is the first time I have written about the cancer treatment since I finished my book (and even then, the book finishes before my post BMT/post radiation scan). Eight months ago, my hematologist said, "congratulations we will see you in 6 months," gave me a hug and walked out of the room. Two months ago he said, "hmmm - there are two lymph nodes that are bigger than they were last time, but we don't know what this means. Let's do another scan in 4 months and see what has changed!" Then he gave me a different type of hug and walked out of the room.

Two days later, my BMT doctor (how nice that I don't have to translate these terms for those of you in the world) said, "I have been burned in the past, let us have a PET scan and see if these are glucose active and if so we will go in a radiate those two spots." Four days after THAT, he calls me and tells me that he spoke to the hematologist (how nice they talk to each other!) and the radiation oncologists and #1 given my history of PET scans (too little adipose tissue to show a real contrast) and #2 the radiation oncologists would not radiate two spots based on such circumstantial evidence (ie it could be scar tissue, etc) - we will have another CT scan in two months and take it from there.

Two months is today.

I woke up at 5:50 am with the sun.

Oh shit! Today is the day! I don't know if I can handle this! What if they find something!

Hush, you need to interview the woman at 7 am, why don't you walk there with the dog. Exercise will keep you in your body.

I launch out of bed, quickly get dressed, grab my video recorder, and walk out the door with the dog. The morning is humid and clear, are singing, and puddles glisten on the pavement from rain the night before.

I need to stay present, I cannot feed this. I cannot feed this Fear. Thank you for my health, thank you for my life, thank you for my friends, thank you for a clear scan.

If the scan shows growth they will want to radiate and then I have no more options of treatment left on the table! My body has already received so much radiation already! What happens if all of that radiation causes something else? I can't handle the smell of that machine or the room with no windows or the fact that it will take them 4 tries not to find a vein and being a PATIENT! I am TIRED OF BEING A PATIENT!!

I can feel my chest tighten and muscles clench. Tears start rolling down my cheeks.

Thank god it is early and no one cares if I am crying as I walk.

I blow out my held breath and consciously roll my shoulders.

Relax, feel the wind on your shoulders, the feel of the leash, look at the flowers, you are here NOW. What will be will be, be happy NOW.

The dog barks at a squirrel and lunges toward the chattering creature, yanking my arm holding the leash.

Watch the dog, observe him, pay attention to what is happening NOW.

I smile as the squirrel scampers up the tree, out of reach, quickly the dog moves to sniff a new patch of grass.

I blow out my breath again, feel the warmth in my armpits contrasting with the coolness of the breeze on my arms, notice warmth in my legs as they find their walking stride, connect with my toes gripping the earth to push me off for the next step, embrace the feeling of loose muscles moving smoothly in tandem.

Thank you for this body. Thank you for my wonderful life. Thank you for my peace.

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.