Journal Entry #13
I feel a bit like a broken record, but thank you for all of the prayers and many ways of support you all continue to give to Josh and me. (And no, it’s not “Josh and I,” in case you were wondering… I graduated with an English degree… which does come in handy, Dad! See?!)
Here are answers to the Top Ten Frequently Asked Questions (FAQs) we’ve gotten since we returned:
1. Are you happy to be home?
Yes… and no. Of course we love seeing our family and friends, but reverse culture shock and other things have made it difficult. We landed in Pennsylvania on Monday, September 28 and I arrived in Colorado on Tuesday, October 6. Overall things are really good, but it’s been a crash landing back to reality, so that's hard. It was amazing to have 3 delicious meals prepared for us every day, our room cleaned every day, and to spend so much time focused solely on healing. The recent public and school shootings make us feel very uneasy as well.
2. How do you feel?
I feel great! I often say that I physically feel the same as the day before I was diagnosed. There’s still a little bit of lingering pain from surgery and the chemo port, but otherwise none of my daily activities are affected. I try to exercise everyday by walking around the lake, doing NIA (http://thesynergystudio.com/whatisnia.htm) or yoga, hiking, and bicycling. Because 5 lymph nodes were removed, I have to take some precautions with my right arm, so… no sunburn, no bug bites, no cuts or infected hangnails, no shots/blood draws/IVs, no blood pressure cuff, no heavy lifting, no carrying a heavy bag with a strap, etc. These things can cause the right arm and hand to swell up forever, which is called lymphedema. When I flew on the planes, I wore a compression sleeve on that arm to also prevent any swelling. I get regular massages to teach my lymph system how to manage without the lymph nodes that were removed.
Mentally I feel so much better. Before going to Germany, my mind raced at a thousand miles a minute. Now it’s at about 4 or 5 miles a minute. A quote I’ve had on my desk for years by Meher Baba is, “A mind that is fast is sick. A mind that is slow is sound. A mind that is still is divine.” Daily meditation, guided visualizations, reading the Psalms, coloring with colored pencils, doing puzzles, talk therapy, and continuing with Brain Light (http://www.brainlight.com/products/general-information/) have all helped me get to this point. Based on weekly therapy sessions, I’m also incorporating more mindfulness practices by trying to be in each moment and remind myself that “I’m happy!” I realized I live most of the time in a “neutral” space… everything’s fine, but now I can stop myself and say, “Actually, I’m happy! This is a great moment.”
Emotionally and spiritually Josh and I are in a wonderful, new place. When I asked a question to the train conductor on our first trip, he ended his answer with, “Don’t panic.” We jokingly used that phrase a lot and I’ve come to realize that since June 1, we were panicking… quite a bit. It doesn’t have to be like that. Not at all. I think my doctors here in the US would like me to panic (and maybe panic a bit more) because one’s level of panic somehow equals their level of how seriously they’re taking the diagnosis and/or how aggressive they will treat it (and aggressive doesn’t always mean better). If I only think about having been diagnosed with cancer once a week (or less!) and the rest of the time live in each moment forgetting about cancer, then great! I thought it was irresponsible to live that way, but instead it’s the quality of life (morbidity) that I’ve been saying is more important to me than my length of life (mortality). Of course, I’m doing lots and lots of things to prevent reoccurrence (more below).
3. Did you do anything fun while you were there?
Of course! Most days we walked around the park, walked 10 minutes through the castle into town, or hiked in the wooded hills behind the Klinik. Josh enjoyed trying out different coffee shops and finding the places that served his favorite dark beer. I enjoyed Germany’s delicious non-alcoholic beers as well. We also traveled on the weekends. The first weekend Josh’s aunt and uncle took us to Rothenburg and then Josh and I used electric bicycles from the Klinik to ride to nearby villages. The next weekend we took the train to Freiburg and fell in love with the Black Forest on a 5 mile hike. The third weekend we rented a car and went to the Rhine Valley and explored castles, bicycled along the Rhine River and then took a boat back up it, and ate 2 amazingly delicious meals. The fourth weekend Josh took the train to Berlin for Lalapalooza and I met his aunt and uncle in Heidelberg. The fifth weekend we took the train to Bamberg (because we liked seeing older, smaller places better) and enjoyed their smokey (think *bacon*) beer. And the final weekend we enjoyed Bad Mergentheim (the town we stayed in at the Klinik) and went to a nearby annual market that has been going on for 600 years!
4. What is Fever Therapy and why was it so helpful?
Since I had no tumors, the doctors decided that hyperthermia (putting me in a machine to heat my body up) and IPT (insulin potentiation therapy or low-dose chemotherapy) weren’t necessary. They focused on gently and effectively getting my immune system to function properly. 4 times I got an IV of dead bacteria and viruses that would cause me to get a high fever (around 102`) for 2 to 3 hours. It started off with shivering for about 30 minutes and then the rest of the time I had a bad headache and my big bones (leg, thigh, hip, lower back) would HURT tremendously. The marrow inside of the each big bone was pumping out white blood cells to combat the “fake” infection from the IV. By the early afternoon the fever and pain would subside. They would test my white blood cells at the end of the day and twice they were over 20,000 (which was great!)
From our understanding, Fever Therapy is supposed to jump-start my immune system so it works properly to get rid of any other cancer cells. Having a ton of extra white blood cells helps too. Also, cancer cells do not survive well in the high temperature that a fever produces. Since I’ve had illnesses my whole life despite eating healthy and getting enough sleep, the hope is that my immune system will work like it's supposed to now. Reducing my stress will be a huge key to this as well.
5. What were all of the therapies like that you did there?
First thing every morning I had alternating warm and cold water streamed onto my legs to boost my immune system (Kneipp Therapy https://en.wikipedia.org/wiki/Sebastian_Kneipp ). 6 days a week I received shots of homeopathic medicine, vitamins, detox substances, or other immune boosting products. Monday and Friday mornings I had Ozone Therapy (they took 100mL of blood, added Ozone, and then gave me an IV of it back) followed by various other IVs (liver detox, Vitamin C, B Vitamins, selenium, heavy metal chelating, hydrogen peroxide, procaine, and others). On Wednesday mornings I also had an IV. Most afternoons were spent in the basement doing various physical therapies (reflexology, massage, Brain Light, biofeedback, magnetic therapy on a Bemer pad, Nordic walking in the park, and more). On Tuesdays is when I had Fever Therapy and then would do water color painting in the late afternoon. Throughout the week I did more water color painting, acrylic painting, meditative dancing, group singing, music therapy, laughing yoga, Hatha yoga, group meditation, Tai Qi, individual therapy, contemplative prayer, and healing touch.
6. Do you have to go back to Germany?
Probably at some point in the future, yes. I don’t “have” to do anything per se, but the doctors said that returning for Fever Therapy (unless I can find a reputable, safe, and afforable place to do it in the US or Mexico) would be best. When I go back would be based on blood tests (like tumor markers), PET scans, how I’m feeling, and my intuition.
7. What’s your treatment plan now and prognosis?
An ultrasound before I left showed no cancer and the blood test of tumor markers was down, so that is all wonderful news! We’ll continue to praise God that I’m currently cancer-free and that His hand will continue to heal my body, mind, and soul.
Before I left for Germany I said that preventing cancer recurrence was my full-time job. Both of those ideas have been thrown out the window. The goal isn’t to prevent recurrence. The goal can’t be to prevent recurrence. It’s impossible. It’s torture and folly to set up something like that because I’ll have to live each moment in vigilance, there’s a contest, a race, with only 1 winner and 1 loser. I can’t rest. I can’t sleep. I can’t relax or it will win. It’s too much pressure… way, way, way too much pressure to try and prevent recurrence. To live this way means that if cancer returns, then I failed, I did something wrong or didn’t do something right.
Of course many around me think that preventing recurrence is the goal so that I live a long, healthy, and generally happy life. I think right now the goal is actually to be present to as many moments of life as possible. Not all of them, sometimes I need to daydream or be absorbed by a book or zone out with a movie, but most of them. So I’ll say and ask others to join me in praying, “Yes, I want to prevent recurrence and in the meantime be present to each moment and hope that it ends up manifesting a long, healthy, and generally happy life.” I can do that, but to try and prevent recurrence… blech. So I say to myself as often as I can throughout the day, “I am happy!”
In addition to this mindset, I’ll probably be doing many things as well throughout the next year: supplements (like probiotics, concentrated Green Tea extract, Cucurmin) and vitamins (like D3, E, and selenium), infrared saunas, daily exercise, rebounding, mindfulness practices, IV Vitamin C, high dose Iodine, Ozone Therapy, Rife machine frequencies, heavy metal chelating, apricot kernals, Mistletoe injections, Family Constellation work, acupuncture, massage, reflexology, Healing Touch, chakra healing, cranial sacral therapy, EMDR, one-on-one counseling, going to the symphony, and reducing EMFs (electro-magnetic frequencies) in our home. Josh and I already eat a plant-based organic diet (http://www.ewg.org/foodnews/list.php); keep our home free of toxins (http://www.ewg.org/research/dirty-dozen-list-endocrine-disruptors) like those found in conventional laundry detergent, soap, and household cleaners; and filter our water (https://www.zerowater.com/).
8. Are you really going to build and live in a tiny house?
Maybe. Who knows. We enjoyed living a simple life in the small space of our room and have started getting rid of so many things in our house. We’ll see!
9. Are you going back to work?
I don’t know. Right now I’m writing about my journey since June 1, 2015… diagnosis, freaking out, figuring out what to do, surgery, figuring out what to do again, going to Germany, and making a zillion discoveries.
10. What are you eating?
Food! ;) … which means lots and lots of organic veggies (and some are even from our garden)! I was able to stretch my stomach to accommodate lots of fresh vegetables every day. In addition, I do my best to avoid all processed food (I’m looking at you, Enriched Flour), sugar of any kind, artificial anything (sweeteners, flavors, coloring, preservatives, etc.), trans fat, caffeine, soy, meat, seafood, and milk products. I’m not the biggest fan of quinoa or corn. At home I’ll occasionally eat clean meat, wild-caught seafood, and foreign butter, yogurt, and cheese.
Again, I really do appreciate all of the support I’ve received. And thank you for your patience in letting us get this update out after we’ve adjusted a bit from being home :)