Vorfreude: relaxing @ rollercoaster results

Vorfreude ("for-froi-da") is the joyful, intense anticipation that comes from imagining future pleasures, which, I am thrilled to report, is what this musing is all about. Yesterday I received scan results. I spent the morning breathing and balancing and breathing and balancing (like my elephant) and then the oncologist walked into the room

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My sister is a beautiful writer (and you can read her blog to see for yourself)

Here are some of my favorite chunks from her beautiful beautiful writing. Her blog is called Hair Optional. Me and My Shadow - July 9, 2012

[quote]I was completely stoned.  Like, freshman year in college stoned. After staring at the tv, drooling, for two hours, I decided that enough was enough, so Michael and I walked a few laps of the floor (which was also apparently entertaining), and then I went to bed.[/quote]

Irony - July 19

[quote]A friend of mine summarized the last few days for me, and I can't phrase it better: Occasionally I wish I had the direct phone number of The Universe so I could call up (during dinnertime) and just yell "WTF?!?!" into the receiver.  This is one of those times.  If any of you have that direct dial, please let me know.  If not, just keep the love coming.[/quote]

Go home. Stay there. Open window. - August 10

[quote]Every year I promise myself that our next home will have windows that actually, truly open.  Windows like I had in my office at the Massachusetts Statehouse where on particularly beautiful mornings I would climb up on my windowsill and pull the window up six or seven feet and it still wouldn't be fully open and just stand there, inside yet outside, letting the cool, soft, morning air wash over me.  Just stand there, hearing the traffic from Beacon and Park, smelling the wind that had just ruffled the trees in the Common, simply feeling the morning in my small corner of Boston.  Until David would see me from his window, call my extension, and tell me that whatever it is, it isn't worth it.[/quote]

Day 8 - August 28

[quote]Hi, I have an 8:30 appointment with the nurses. Hi Lydia, you do know that it's 9, right? Well, I was here yesterday at 8:25 and didn't get in to see them until 9:15, so I decided to cut out the wait this morning. Is that going to be a problem? Um, nooooo.. Good.[/quote]

Hobgoblins - September 12

[quote]Imagine the entire underside of your tongue with cuts on it.  Now imagine moving your tongue.  Now imagine trying to talk, eat, drink, or yawn without moving your tongue.  Yeah.  That was my problem too.[/quote]

Floating - September 28

[quote]... my extraordinary therapist, who happens to be Israeli, decided to introduce me to Yom Kippur.  Putting aside the self-flagellation portions, because I have that part covered, she asked me to start counting my blessings and to do this every day. The purpose is to help me move from the feeling of treading water to floating.

What's the difference? Treading water takes effort; floating doesn't Hmmmmmm.[/quote]

Neutropenic Fever - October 13

[quote]My nurse and the night doctor eventually appear to take vitals and generally go through the admit checklist (Are you depressed? Are you in any pain? Do you have a living will? It's fun, especially at two in the morning.).[/quote]

Warm Blankets - October 23

[quote]When I was a little kid, my mom would take the laundry from the dryer, put it into our antique wicker oval basket, switch the next load, and start folding. As she would reach into the basket, she would encounter a sock, an undershirt, a soft giggly calf, a pair of underwear, a small hand, a t-shirt, a shoulder-being the wonderful mom that she is, she would tickle said body part for a moment and then move on to the next piece of clothing.

There is nothing quite like a warm pile of laundry. In law school, I remember vividly that during exams, I would do a load of laundry, dump it into a chair, and then sit in it for ten minutes.  It didn't matter if it got wrinkly; it was all jeans and socks and long-sleeved t-shirts that wouldn't get folded because I would just reach into the pile for the next four days and get what I needed. But as I was buried in it for ten minutes, a shoulder would drop slowly from my ear to where it belonged, my lower back would relax back into its natural curve, my thut (the part where ones thighs meet ones butt) would release, unclinching both my hamstrings and my butt. [/quote]

Thut is my perfect new word for the day...I love you chiquita.

A walk around the Bad Salzhausen sculpture park (und update)

So yesterday I started cycle 3 of hopefully 8 cycles (8 cycles of what, you ask? read all about it here!) - a full body hyperthermia where I SWEAT like a big sweating sweaty sweat person (according to the nurse I was "schwimmen en de table", love it!).

Today I walked my husband up to the top of the hill to catch the train back to the station to catch a plane so he could take a bus to take a train to take a taxi to get in the car to drive home (whew, and yes it was a LOT easier to get home from DTW).

Before I started my infusion for day 2 of chemo I walked around the park and took pictures of the sculptures...and I want to share because they are beautiful!

I also want to share a bit of where the money is going for all of you who have SO generously given. Here is a small breakdown of costs (200€ for the daily local hyperthermia, 2600€ for the once a fortnight full body hyperthermia, 1800€ for the chemotherapy I purchase every two weeks, 16.50€ for beautiful food every day at the clinic, 45€ a day for the infusions I receive, etc etc)...So far the Universe has sent along about $11,200 - THANK YOU SO MUCH!

It is really nice to pay for something and feel as though there are all of these angels surrounding me and paying with me. It feels as though I am part of a big beautiful world - which I AM!

In addition to supporting the German economy, what am I doing here, you may ask? Well - I am studying A Course in Miracles - which is blowing my mind in how it looks at the ego and God and all of that good stuff.

I am continuing to work with Real Time Farms (albiet in an abbreviated fashion).

I am making new friends and learning a small bit of German. Genau!

A day in the life of Bad Salzhausen (and what is the plan?)

Yesterday morning I woke up, gave myself a skin brush, meditated (thank you Transcendental Meditation!), and then walked to the clinic for my local hyperthermia.

Every day (except for holidays and Sundays) I lay on a water bed underneath a dessert plate sized arm with a water balloon underneath it. While I am on the table I receive vitamins, homeopathic detoxes, or homeopathic support in the form of infusions through my port (which is a titanium disk under my right clavicle).

I listen to Amma's BhajansDr. Carl Simonton's Visualizationsthe Rose EnsembleHildegard von Bingen, the Bhavagad Gita, and Krishna Dass on my ipod and I let it play on shuffle as I visualize the heat doing all sort of good things...

(and now I will take a break to explain what hyperthermia does to cells courtesy of my friend BH who has a PhD in this good stuff)

"cancer cells live in a low oxygen (hypoxic) and acidic environment and heat treatment of cells that live in that environment is cytotoxic. There are also other effects such as heat-induced alterations of the tumor microenvironment and synergism of heat in conjunction with chemotherapy (and radiation, but you aren't having that treatment). It is thought that there is induction of heat-shock proteins (HSP) which help to regulate apoptosis (i.e. cell death - in cancer cells, apoptosis doesn't occur)."

(and this is more research about hyperthermia and chemo for those of you who like data)

"There are a number of German clinics, such as those operated by Dr Wolf in Hanover or by Drs Herzog (this is where I am!) and Douwes, that practice the use of hyperthermia in combination with more ´orthodox´ therapies.

The use of hyperthermia with chemotherapy, according to one report in the Lancet, seems to significantly increase 5-year survival rates and chemotherapy success. Another report in the Lancet reviewed various studies in USA and Europe and reported that response rates for chemo and hyperthermia combined are 70%, whilst hyperthermia alone gives a response rate of 15%, chemotherapy can give results of 5 - 60 per cent depending upon the drug, and radiotherapy alone about 35%. Hyperthermia also appears to allow very high doses of chemotherapy to be administered more successfully and sometimes without significant side-effects.What seems to be the case is that hyperthermia overcomes tumor resistance to chemo and radiation; that it can help the performance of some chemo agents and that it helps destroy cancer cells in especially resistant phases of cell division."

There you go, more information about hyperthermia than you may ever have wanted to know.

So after my 60 minutes on the water bed of hyperthermia, I went directly into the Magnetic Field Therapy which is supposed to innervate one's mitochondria and generally be a good thing. While I was there I read my lesson in A Course in Miracles, which I am LOVING. I also took the Procarbazin and the Prednison because I was day 4 of my second cycle of BEACOPP.

(once again, an opportunity to take a break)

When we got here, we were thinking that it would be a 3 week stint with some low dose chemo because that is what I had read that one could do with hyperthermia. But when we spoke to the MD he offered us a choice between palliative and ameliorative - and we choose to go with ameliorative. Here is a quote from my beloved husband explaining this to his family.

"The main decision was if we should try full chemotherapy with the goal of eradictation of the recurrent Hodgkins or treat more for debulking/palliation while taking less risk of encountering toxicity.  Her limited symptoms and focused areas of disease (R arm pit, near her liver, and in her lower mid-chest) make treating to eliminate very tempting.  Also her labs are the best they have looked in years.

We have opted to start down the road of more intensive treatment with a full dose regimen of BEACOPP chemotherapy. The main question will be if her bone marrow can tolerate the medicine - her lab tests and how she feels will let us know in the weeks to come."

So what is modified BEACOPP and what does this mean? (note I am reading from a page written in German).

  • Day 1 - full body hyperthermia with Cyclophosphamid, Adriamycin, Etoposid (plus TONS of other goodies infused), oral Procarbazin
  • Day 2 - local hyperthermia with Etoposid, oral Procarbazin, oral Predisone
  • Days 3 through 7 - local hyperthermia with oral Procarbazin and oral Predisone (with infused homeopathics to help and amino acids for energy)
  • Day 8 - local hyperthermia with Vincristin (with infused homeopathics to help and amino acids for energy) - (we decided not to do Bleomycin, because I had that one before and I had lung issues)
  • Days 9-14 - local hyperthermia, Vitamins, homeopathic detox, etc (this was when I was sleepy for the first run through, will see how the 2nd cycle goes)
  • Day 14 - depending on my White Blood Counts, Red Blood Counts, platelets etc - we can do the whole thing again
  • Rinse, repeat 6-8 times depending on how my body reacts (read 3-4 months)

What in the world is involved with a Full Body Hyperthermia? Well, this is the COOLEST thing ever! First of all - the night before and that morning I get a LOT of liquid because they want to give you a real fever with lots of good sweating. You walk to the basement of the clinic and get onto a thin hammock between two sets of very big lights. You strip down, get onto the hammock and within 5 minutes are zonked out on anethesia and lose 4 hours of your life. During the first two hours they gradually raise your temperature until you get nice and hot (105 is where I have landed the first two times, ideally you can get to 106, but I am a lady who sweats - thank you crew and Bikram).

Once you get as hot as you can, you are kept at the temperature for an hour - while they monitor your blood acidity level, your liquid level (never again will I tease my husband about wanting a catheter while watching TV), and your temp. Then they cool you off, wrap you in a blanket, and off you go to pass out in your room for the rest of the day.

It is, without a doubt the best chemotherapy experience I have EVER had. No nausea, no wooziness, no feeling that my arm has been stung by a million bees. I have a good sweat, go to bed, have a good appetite for dinner, and then sleep through the night. Absolutely amazing.

I had thought that I would not be allowed to do the full body more than once a month, but so far I am able to handle it every 2 weeks - which is one of the many reasons that I am so excited to be here and receive the chemotherapy here.

(okay, back to my day)

Breakfast of beautiful fruit (I have eaten more kiwi in the past 3 weeks than I have EVER eaten in my life), a walk to Nidda for apothecary supplies and a visit to the health food store for no sugar Almond Butter, lunch, emails/Real Time Farms work, a walk around the inhalatorium, a drink from the LithiumQuelle, afternoon meditation, dinner, and now this missive.

(the almost final break! to talk about Bad Salzhausen)

Bad Salzhausen has been a mineral spa village for over 150 years (they used to make salt here from the mineral water). As such, there are several fountains with water one can drink from, a thermal bath area where you can bathe in the water (and a sauna area where we learned that bathing suits are not encouraged), and an inhalatorium where you can breathe the salt water brine. So everyday I drink the Lithium Wasser (because it is supposed to help with the White Blood Cells, and what is FASCINATING is that when I got here it was the saltiest/rustiest thing ever - since I have started chemotherapy - it just tastes like water) and I walk 10 times around the Inhalatorium.

So far the Universe has sent us about $6000 towards being here. I am so so grateful to everyone who has helped out. Thank you thank you thank you!

(the final break)

So what is the plan?It totally depends on my blood counts and what makes sense - at the moment I am here and I don't see myself getting on a plane anytime soon.

Hugs and love, Corinna

Why I am in Germany? (and yes please, I am asking for help)

Specifically, why I am in Bad Salzhausen undergoing chemotherapy where I am going to lose my hair again? Because I can walk around the inhalatorium, drink from the lithiumquelle, make myself fresh squeezed juice before every meal, visualize healing rays of light and switches turning off oncogenes as I feel the heat from the local hyperthermia on my skin and in my bones. Because I told Dr. Herzog that I wanted to be done with this and be healed - that my doing alternatives was not enough to kick this and that we are surrendering to the Universe that this is where I am supposed to be.

My meditation today for the Course in Miracles is, "God's Will for me is perfect happiness," and that I am worthy of asking for help.

I have been told that I am not very good at asking for help for myself - which I think has something to do with a foolish idea that I am not WORTHY of such help/such asking/etc. So that stops now. As such, I have set up a widget so that if you want to contribute financially to this quest of mine, you can. (look right)

If I were to do all treatments in Germany the full cost would be about $125,000-$150,000. (Just to give you some perameters).

Given the whole kerfuffle of money making people insane, etc. I appreciate your understanding and thank you for your support.

RIP Steve Jobs

"Your time is limited, so don't waste it living someone else's life. ... Don't let the noise of others' opinions drown out your own inner voice. And most important, have the courage to follow your heart and intuition. They somehow already know what you truly want to become.
--Steve Jobs, 2005 Stanford Commencement Address

Mastering my mindset...(requires constant vigilance)

A dear friend of mine wrote to me over a year ago an email about my book - and I knew it was important. I would read it and think of what it meant and read it again. I wrote out her email onto two post it notes, now folded and wrinkled. Tape is frayed on the edges from where it used to attach onto my computer monitor. This is what she said to me: "Dear Corinna, Your book is very different from other cancer survivors. Young. Refused to say yes, etc. The acceptance of your U of M doctors as you groped. Unusual in many ways. When you write don't follow formula for these kinds of books. Many r terrific. But they are not for your audience or not as much. Be clear about what is different. This is your story. - C. 6/22/10"

So here I am, over 14 months later - trying to work with my great publicist found through Balboa Press to put together a succinct intriguing 150 word phrase to pull people in. I wrote over 80,000 words and I am distilling that down to 150.

Then I struck on this phrase - "this book shows the myriad ways her relationship to the world is transformed because she transforms how she looks at the world." Which is remarkably providential because my inspiring and luminary friend Kelvin Ringold of Intensely Positive started recently signing off his Vitamin K  daily inspirational goodies with "Master your mindset and master your life."

Mastering my mindset takes work and awareness. It takes constant vigilance! (thank you JK Rowling). It takes a sense of humor and it takes patience.

I began the process when I wrote my book, going through my old journals and rereading what I wrote at the time, it continued when I read Eckhart Tolle. It continues every day I catch myself thinking a thought that is not so nice, being angry with my body for not being able to do something that it used to be able to do well (or at least that I remember as being so).

Stupid chemotherapy, I used to do this so easily.

I caught myself yesterday as we rushed through 5 sun salutations as quickly as we could in yoga class. I stood there with my heart POUNDING in my chest, lungs burning, dizzy, eyes closed and my first thought was to hate - HATE - (a word of huge yuckiness) my body. Then my awareness caught up.

Corinna! I have lungs that can burn and a heart that can thump. I have a beautiful body that is working hard to do what I ask of it! Be grateful for the taste of iron in your blood - I am ALIVE!

Thank you world, I am alive.