Grateful

A whirlwind 7 days in Germany to have an ultrasound with Dr. Herzog, sweat in the sauna, wander around Weihnachtsmarkt/Christmas markets, and meditate with John of God. It was very full and very wonderful - not least of which was the Ultrasound and Herzog's assertion that all is well (confirming what I had gleaned from the PET scan)

I am going to spend a moment reveling in gratitude for that news.

I am grateful for all of the people who supported me so I was able to spend 3 1/2 months in Germany. I am grateful for all of the people who do research in oncology and decide that certain medicines, treatments, dosages, radiation levels, therapeutic agents, cleansing routines, etc are better for me than others. I am grateful for the doctors, the nurses, the techs, the people who cleaned the floors of the clinics and the hospitals where I spent so much time this year. I am grateful for those who cooked for me.

I am grateful for those people who pack the needles, the bags, the saline solutions. I am grateful to those people who donate blood so that I was able to receive infusions and have enough red blood cells to walk up a hill without pausing every 5 feet. I am grateful my doctor here felt comfortable with me heading to Germany. I am grateful that we are once again in the monitoring stage of my physical doings.

I am grateful the gentleman across from me is using a green pen to write on his pad, I am grateful I am heading to a conference on farming for the rest of the week. I am grateful for the timing of my most recent trip to Germany because Christmas markets are wonderful. I am grateful John of God was there with me.

I am grateful for my family, friends, Universe, friends I haven't met yet, and for the world of amazingness we spent our time floating in.

I am grateful grateful grateful.

Thank you Universe.

(Here is a wonderful poem by ee cummings about the infinite yes for you to peruse, as well.)

 

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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Aufedersein Bad Salzhausen

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 - it is the perfect pause at the end of this particular chapter.

[quote]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.

― Gilda Radner[/quote]

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

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.