A day for Sabbath

I have been trying very hard to implement a day where nothing is planned. A true day of sabbath, rest, rejuvenation, ability to play, or roll with what sings to you. As Eckart Tolle says - if life is the dancer and we (each one of us in our uniqueness of being ourselves - ie in my Corinna-ness as Corinna) are the dance - a day of rest allows us to fully honor the spontaneity of what our hearts and bellies might want to tell us to do. I tell you, we have been able to pull off two true Sabbath Sundays in the last 5 weeks. TWO out of five is not very good odds. It could be that I do not have a community that functions around such a day. If I were an orthodox jew this would be part of my culture and there would be support and honoring of such a day (I love Anne-Marie Slaughter's take on this). But as it is, because we wake up so early the weekend is often the only time to plan outings with new friends - so what are you left with, not seeing someone for three weeks because your Sunday is supposed to be sacrosanct? Hence the 2 out of 5.

But darn it, I am committed to this idea and want to make it a habit. One true day of naps and walks and wanderings and belly buttons listenings.

 

Aufedersein Bad Salzhausen

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The platelet count and Dr. Herzog agreed,  6 cycles of the modified BEACOPP were all that my bone marrow was going to stomach (I hope platelets have stomachs, that would make me very happy). As such, I flew home, had another PET scan (which showed just one spot which we will radiate), met with all sorts of MDs, had my infected port removed, blah blah data data.

It is nice to be home, it is nice to be able to cook what I want when I want to, it is nice to sleep in my own bed, scratch my own kitty, kiss my husband's nose.

I will miss the sauna, the amazing peeps I met from all over the world, the kindness of the nurses and the MDs, and the relaxed attitude the clinic held towards certain things (like eating salad while severely neutropenic). Aufedersein Bad Salzhausen.

I spent 92 days in Germany (two days thankfully were not counted by the German government - otherwise I would have overstayed my visa and Germany may have gotten annoyed).

I am working on our new life in New York - get the house built, planning what kind of animals (chickens and ducks AND goats?) and planting and growing goodies again...I miss having a garden.

As a very wise woman told me - "If you stop planning you are surrendering." - not an option. So, planning I am.

A beautiful dear friend of mine (you can read her blog!) shared with me this quote from Gilda Radner - it is the perfect pause at the end of this particular chapter.

I wanted a perfect ending. Now I've learned, the hard way, that some poems don't rhyme, and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what's going to happen next. Delicious Ambiguity.

Thank you for being with me on this story of mine. Delicious Ambiguity indeed.

Weisbaden, Hildegard von Bingen, und Kloster Eberbach

This was not with trains, this was with a rented car and a SatNav (thank you British shorthand for a new word for a Tom-Tom). We went to Weisbaden, "the Nice of Germany" according to our guidebook, the Hildegard of Bingen's abbey, and a beautiful Gothic monastery - Eberbach.

Weisbaden feels like Nice to me because the buildings were very fin de siecle, with the balconies and whatnot.

Well, except for the Rathaus of course. (City Hall)

Hildegard's original abbey was lost in the 30 years war (or the 100 years war, one of those). So her current abbey was built about 100 years ago in the Romanesque style.

They also make their own wine from the vineyards around, which cracks me up.

On the way back to Bad Salzhausen we found the monastery - Kloster Eberbach - where they filmed the Name of the Rose...(which reminds me I need to watch it again.) They also make their own wine.

The scene from the Name of the Rose was filmed in the former dormitory for the monks - apparently the largest single Gothic room in Germany.

I think my favorite building from the complex is the Orangerie (and the sun came out just in honor of the picture).

Halumping around Hesse (und medical update from Deutschland)

Those of you who read my book know the word boring is anathema to me. Instead I will simply say I have found myself more and more drawn to exploring outside of my glorious village of Bad Salzhausen. This region of Germany is known as Hesse and it is served by a perfect train system (which leaves at 4 minutes past the hour and at the big stations all of the clocks move in PERFECT synchronicity, one could dance to it).

My first trip was to Bad Nauheim - where Elvis Presley was posted...

From what I understand, he refused to stay in the barracks and instead took over the top two floors of the Grand Hotel.

(It is good to be the king.)

There is a beautiful garden and spa...

Bad Nauheim also has springs, an extensive thermal bath complex, and a MUCH bigger inhalatorium than Bad Salzhausen ...

Nearby to Bad Nauheim is Friedberg, which has a beautiful cathedral and a castle with a very distinctive 13th century tower...

Though I had flown into its airport, I had not yet walked the streets. So on another day my knitting, the kindle, and my water bottle visited Frankfurt! (which felt a bit like London in that one could tell that there were many building opportunities after the war).

I like the ceiling of the train station...

I also like the heating system aesthetic for Baroque houses. Goethe's house was rebuilt after the war with all of the original interiors (that had been taken out and saved from the bombing)...

I got turned around walking back to the station, but I am 95% sure that this is the opera house...

Next trip was to Marburg, the original capital of Hesse (from the 12th century again). It is now home to a big university, a huge mass of pedestrian streets...

the original castle...

a very impressive Gothic cathedral, and a huge number of beautifully preserved buildings...

It is nice to bop about on the train. I am going to continue to do so as time and energy permits.

On the medical front, I have finished my 5th cycle of the modified BEACOPP. My platelets seem to slower and slower to rise again, which the md thinks is because my bone marrow is tired and perhaps I may not be able to do as many cycles as he originally thought. I expect it will become clear in time.

In the meantime, I am receiving local hyperthermia and infusions daily, walking, breathing, knitting, reading, eating, swimming (on Sundays), and generally reveling in this beautiful life.

How can one not when surrounded by buildings with fishscales?

 

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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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!

Thank you Detroit News Herald!

Check out this great article from Amy Bell - this amazing world of technology means that I was able to talk to her in Germany last week via my computer. Thank you Amy! ANN ARBOR: Former resident featured on "The Doctors" for her 'mind over approach' to Hodgkins Lymphoma

Today about to head in for my day 8 of infusion goodness from the "red couch" waiting area - one of the residents at the clinic told me that his sister lives in Ann Arbor, saw this article, and asked him about it!

Life is AMAZING!

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.

Watch me on The Doctors talk about Mind over Matter (and my book!)

Screen shot 2012-01-31 at 8.59.47 AM

Screen shot 2012-01-31 at 8.59.47 AM

Thank you so much Universe, thank you Joni, Samantha, and Carina at the The Doctors and for everyone who made me feel like a princess through out the entire process! Here is the link to the video of me talking! Whooppee!!!

They dubbed me "Cancer Survivor & Eternal Optimist" LOVE LOVE it!!

(Note… as I clean up this link I am noticing the video is off the web - a good lesson for me to capture such things myself… glad I have a screenshot at least)

I signed a release to fly from LAX with (beautiful) shellack on my face

Thursday night I arrived to LAX at 11ish PM - at 3pm the next day I flew back to NYC with shellack on my face and Farrah Fawcett hair. I signed a release form that I would not talk about what happened to me until the piece airs. I will not talk about having a dressing room or being treated like a princess or sweating in a silk jewel toned shirt. I will not talk about the beautiful voice of "What if" that wonders what I would have said if I had not been so excited - or whether I even really remember what I said at all.

Hopefully it will air soon, and this mystery will disappear. Cheers to sharing and cheers to dreaming of sausage!

It was an amazing week and I am SO grateful for the opportunity. Thank you Universe!

Happy New Year! (to the Dragon and her Doings!)

Growing up in DC and heading to Chinatown for Dim Sum Sunday Brunch, we would invariably have the menu in front of us that listed the different animals of the Chinese Zodiac. I am the Year of the Dragon, specifically the Fire Dragon (according to Wikipedia). The year of the Dragon is the only year that has a legendary animal (instead of a rabbit, or a dog). The Year of the Dragon starts January 23rd, 2012.

and here is the description of those of us lucky enough to be born in this year (also courtesy or Wikipedia)

Dragon龍 / 龙 (辰) (Yang, 1st Trine, Fixed Element Wood): Magnanimous, stately, vigorous, strong, self-assured, proud, noble, direct, dignified, eccentric, intellectual, fiery, passionate, decisive, pioneering, artistic, generous, loyal. Can be tactless, arrogant, imperious, tyrannical, demanding, intolerant, dogmatic, violent, impetuous, brash.

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This description of me - is, as I write with both dignity and strength - bang on (and who knows if that is the chicken or the egg on that one). Ah well...

The other part of this Year of the Dragon shenigans that I love is that my MOTHER is also born in the year of the Dragon and so was my paternal grandfather. And my father loves dragons - good thing too, because he ended up with two of them.

Happy New Year! Cheers to Dragons and Dragon Doings!