Category Archives: Cancer Therapies

Twilight Zone

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Over the last few days, since my CA-125 bloodtest, I’ve been wondering about the result. Not stressing, more like being very curious.

Yesterday was doctor’s appointment. He wanted to know about my camino hike and said what a tremendous accomplishment that was. Then he showed me the paper with result, which was high. Another few points added to the fear scale.

I said, “Oh this just shows that there is more sugar in my blood.”  

He just smiled but didn’t reply. Checked my lungs, which were clear. He noticed my weight and said I’d lost 8 pounds since May. I said I would hope so as I’d just walked nearly 500 miles. But, back to discussion as to what treatment.

I told him I did not want chemo. Should be the very last choice. He said that in his opinion I should have surgery. When I reminded him that the Denver specialist we consulted did not want to touch me without chemo, he assured me that we could find someone else. He was concerned about possible “seed pods” in the abdomen. He explained that P.E.T can’t “see” those and if they’d turned cancerous, I would be in a difficult place. Only through surgery could they look around and see other areas. Of course, this surgery would not be without dangers. The same is true, though, with Cyberknife or any other.

I asked if he would go “outside the box” with me and help me with alternate treatments. I still have about $500 worth of Iscador and other holistic meds I’d brought from Germany, and which have to be injected but ONLY by a Physician. He said he knew of 2 holistic docs in Ridgway. I said O.K. we’ll wait until P.E.T results and then I need to do something quickly. He said:  “Inge, you really need to. This is cancer we’re dealing with.”

I told him that chemo had not done too well for my friend Phyllis, who died while I was on the camino. Different cancer but same effect, as for so many.

My blood pressure was up but I’d imagine it was due to anxiety. After my walk, it had dropped 10 points.

I’m scared but want to have ONE more chance before pumping poision or radiation inside and kill off half my cells and then experience those side effects. Once this is done, any holistic approach would be extremely difficult to remedy the situation. Of course, holistic means also very expensive.

I am still researching for places which have a different approach. There are quite a few choices.

I needed to breath and I needed to walk. I made a quick salad, a small sandwich, took a bottle of water, grabbed my poles, and drove up to the Black Canyon.

We’d had a week of rain, snow, gray and I couldn’t walk a lot. I drove in and parked my car. Snow-covered brush and canyon walls. Beautiful view, sun, and only a gentle breeze. I was the only person. I took my day pack, which was astoundingly light, my poles, and walked. I noticed soon that where I would’ve been slowing down or was out of breath, previously, after all, this is 10,000 feet. I just plowed through. It felt so good to just walk. Then, the familiar click-clack of my poles. Stillness, peace.  I saw tracks in the snow from all sorts of wildlife. Rabbits and large tracks, probably elk.

I thought back to just a couple of months ago, when I walked and wondered what the camino would be like. Now, I was back looking around and noticing how similar the view and the absence of noise. I’d also noticed that I clipped that 1.3 miles in under 25 minutes.

I stopped at the picnic bench, brushed off the snow and had my lunch , I looked around  and enjoyed the peacefulness. I walked up to the edge of the cliff and looked down. The Gunnison river was like a small glittering ribbon. The walls of the canyon looked like they had been dusted with powedered sugar. It is so very beautiful there.

I didn’t come home with any answers to the decision I have to make but it sure made me more peaceful. I won’t be able to go up there when it snows again as I won’t have the proper boots and the terrain will be too difficult to walk. But, there are plenty of nice trails close to town.

Now, meanwhile, waiting for P.E.T scan and those results. That’s the BIGGIE.

 

Ode to feet

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During our daily camino walk and climbing as well as blisters and other foot related maladies that I observed in other people, I was thinking about feet.

How unappreciative we usually are of our feet and the miracle they perform without us giving it a second thought. We spend a lot of money on hair, make up, nails. O.K. Some people have pedicures. I had my first one only a couple of months ago.

Usually, we just put on socks, shoes and run off. The first time I thought how very grateful I was for my feet was 2 years ago. One morning, while walking into the kitchen, I felt a sudden, sharp pain. I cried out and looked down what I’d stepped on. There was nothing. Puzzled, I looked at my right heel, sure that there would be a glass shard embedded. Nothing. The pain continued with each step and was so bad that I tried walking on tip toe.

I figured I probably pulled some muscle or small ligament and it would disappear after a few days. Well, it didn’t. I hobbled around doing my chores. I went on errands with the car and then hobbled into the store. I really have a high pain tolerance but this was getting worse. I had to stop walking. I had to stop volunteering at the soup kitchen, where I’d been chef once a week for 3+ months.

I took Ibuprofen, Tylenol, the usual. I was stuck in the house and getting depressed. I kept saying to my friends, ‘If I can’t walk anymore, they may as well shoot me.’ No one could tell me what the matter was. I gained weight for lack of walking. One day, I put the symptoms on Web MD. There was this odd name: Plantar’s Fasciitis. Now, I had a name but the prognosis was not very encouraging. I asked around and found a very capable therapist. For a month I went there and had electro-therapy.

While laying there, with nothing to do, for an hour, I talked. Poor guy had no choice . I’m glad to say that he and his wife became dear friends. Shortly after that, I changed my lifestyle due to cancer.

If someone would’ve said to me, a few years ago that what I was putting my mouth was wrong, I would’ve scoffed at them. I mean, I selected my vegetables carefully, I did not eat fast food, had no cokes or sweet tea, I didn’t even eat a lot but still had gained weight.

Well. Then when I did all that research on cancer and other immune illnesses, a light bulb came on. (Ten years prior, when I had cancer, I had eaten better and healthier but after my chemo and tests I thought ‘now, it’s gone’ and went back to my meat, sauces and oil/butter cooked foods.

It wasn’t long after I converted to Vegan, that a host of problems disappeared. Plantar’s Fasciitis has not returned.

I was absolutely certain that once people saw what it did for me, they’d be just so happy. They’d immediately copy it. (Some did.) Others were so full of resistance that I had to shut up about it.  Others tried it for a little while and because it’s not easy, in the beginning, they stopped, or, they changed it without the getting the great results. That was huge surprise and it continues to amaze me how people just want to have their crap (and eat it too.)

But, when I think of what my FEET accomplished I feel so very happy and grateful that something made me listen and change. I am in awe, that they carried me these hundreds of miles without a whimper. (The blisters don’t count.) I treat my feet much better now. I don’t need expensive pedicures.

Walking at home…

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It’s been a few days since we’ve returned. The first few days were busy with all the usual tasks. Mail sorting, bill paying, laundry, dusting, leave raking and shopping for groceries.

The day after I got home, a friend came to pick me up to drive to Grand Junction. T.V. station KREX wanted an interview with Carrie and I. Well, that was fun.


Also a reporter from the Daily Sentinel was there at the same time (click link to read). See the NBC11 News report.  It was on the news that Sunday night. KREX took some artistic license with the contents (and my name) but overall the word was out. Carrie had an interview with KKCO the next day and some more pictures of our journey were shown.

Sunday afternoon, Carrie, her mom, and her sister came, as did a few friends of mine, who wanted to meet Carrie. They wanted to hear what her impression and thoughts were. How or why it had changed her. That was a very nice afternoon, recalling and remembering our journey and as long as we get to talk about it, it hasn’t ended. My friend Carla stayed to help me write a letter to Marianne, in French.

All my friends and people I know, i.e. Post Office, grocery store, etc. tell me how well I look. They say I’m glowing. Perfect picture of health. (From their lips to God’s ear.) I feel really well. I’ve lost 5 lbs since I’m back. My body is shedding fluids. I’ve also started to take Avemar. This is a fermented wheat germ product and is to improve immune system as well as detox. I’ve seen a one-hour special, called “Run from the cure“.  It’s about oil made from hemp that helps to cure or alleviate many illnesses. Smoking marijuana, on the other hand, apparently does not help in cancer cases.

Strangers called me and asked for advice for lifestyle changes, to improve their health. I told them that I’m working on getting a cooking class together and would love to show them how this can be done, making small changes and working up to the grander scale.

During those first days, I still felt displaced and out of sorts. I was missing the simple act of walking, of meeting pilgrims.  I was told when the P.E.T scan appointment was made that I was not to do straineous exercise. The long walk was the reason I had to wait 3 weeks for my body to become ‘resting’. I’ve tried. I really have, but yesterday, was a gorgeous late fall day. The special kind we have here on the Western Slope. My body was idling, revving to go. (What I did not miss, was the JAMON.)

So, I put my snazzy camino boots on and walked the path by the river. The San Juan mountains, south of me were snow covered and brilliant against the azure sky. Trees still had gold, green, yellow foliage. I could almost pretend I was walking the camino. Horses were in one pasture and then I saw a pair of foxes. Their ears came up as I passed but they stayed.

I was still thinking about some of the places I’d been, when some people walked toward me. Automatically I said ‘Buen Camino’.  They smiled and said “Good morning.” I chuckled to myself; maybe they thought I was Mexican.

I felt bad thinking about those poor people getting pounded by this freak snow storm, back East, when I was enjoying this perfect weather that we have here, oh, about 300 days out of the year.

It felt so good to just keep moving. I walked a measly 3.5 miles but felt so much better. I don’t think this will hurt anything? In any case, I’ll stop walking a few days prior to the appointment. It’ll all settle. Of course, now I’m also thinking what all these tests might show? But, I push those thoughts away. There’s no use on trying to analyze something that I don’t know. Would drive you crazy, if you allow it.

I suppose walking the camino at my age and circumstance may be a bigger deal than I thought. Or, perhaps it’s the curiosity of avoiding chemo that makes this newsworthy. Could be, because I did finish the walk. In any case, a reporter from “The Watch”, a regional newspaper called yesterday for an interview. This one is coming out Thursday and can accessed online. My 15 minutes of fame. But more so, everyone is anticipating the results of these tests. Waiting, wondering if all this walking has done something unique. I know it has, without results from tests. Meanwhile, I will enjoy the great weather and walks and even go up to the Black Canyon. I think walking there will be gorgeous right now.

 

 

 

 

Last kilometers into Santiago

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I am catching up the blog but have to rely now on my journal as memories fade already to exact words and thoughts.

As we were walking  the last kilometers I was thinking about the trip. Did I have expectations? No. Did I have any regrets? None whatsoever. Will I be disappointed if results turn out different? No, not really. It has been a fantastic journey, in many more ways than one.

I was wondering what that last, steep hill would be like? I’d read about it in 2 different books and was a bit nervous. But, if I can climb the Pyrenees then I can climb this one too. We came closer to Santiago and some people sped up. We stopped at a mount with a huge wall with a likeness of the Pope on it. Then went on. When we actually came upon a hill I went up without comment (or sigh) and when we came down I realized that this was ‘the hill’ they had described as so difficult. Phhhht!! Totally anticlimactic. Whiners, both of those authors. Unless they or someone moved the mountain.

On we went to Santiago but curiously did not feel a whole lot. There were large, box-like Apartment Housings, 60’s style that seems to be the same all over the world, in cities. Since it was Sunday, shops were closed. I had had the shakes earlier on and I believe I’m missing vital nutrients besides this daily, physical hardship. We must’ve walked 2-3 km when we finally came upon a cafe and sat down. After a small respit, on we went and then saw the historical section. There were lots of people walking around the small, cobble stone streets. I saw spires from the back and other nice buildings. We met an American couple, who were visiting Santiago for the second time, liking it that much. They told us that we were the first, actual pilgrims they had seen in three days.

I had told Cameron earlier that I did not feel I had arrived until I would see the cathedral. The absolute finishing point of the camino. When we came around to the front, ‘Timothy’ came back once more, lodging in my throat. There it was. The End. I had absolutely made it. Through grueling mountains and long, hot hiking, sunburn, toe injuries, hunger, thirst, and double blisters. Santiago de Compostella. I remembered a sign we had seen, right after St. Jean pie de Port, which stated 792 Km to Santiago and how I thought what a LONG way away this was. Now, I was here and tears came. Then, Cameron reached into his backpack and came out with red carnations. Like a magician. He had carried those 2 flowers for awhile. That really opened the water works, We hugged one another and then group hug for us three, so happy to have arrived.  Happy shock. The couple had also come around and congratulated us and took a few photos, promising to e-mail them. 

 

 

 

 

 

 

 

 

Inge – Rabanal to Mercadoiro and the Iron Cross

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Rabanal

Someone told us that in the small church in the village there would be Gregorian chanting. Carrie and I started out in a small church, but after we’d sat there for ten minutes without anyone coming, we figured we must be in the wrong church. Sure enough, here came Barbara to tell us the right spot. The other church was sad and dilapidated.

In most places, they would have closed it for fear the ceiling would fall down. Pamphlets in multiple languages were passed around, but the thirty-minute service was in Latin. The monk sang and the congregation answered. I know it’s all a ritual, but it wasn’t bad, and I loved hearing Cameron with that sing-song.

Four pilgrims said a short prayer, each one in a different language, and that was that. I told Carrie she’d receive extra credit for Latin.

We went to bed fairly early and there was only one snorer. When I went over to the kitchen at six-thirty, the stars were brilliant and plentiful. A lovely sight, as we hardly ever get to see them like that.

Up to the Cross

We started walking at close to eight, and it was almost dawn. We had to wear several layers of clothes, and I wore my wool shawl that I’d gotten in Venice. Crisp and cold, but walking was good. Except my nose was running continuously. We went past old stone houses in tiny villages, stepping back through time and centuries.

The sun came up, huge and brilliant in orange and yellow. As we walked, we saw gorgeous green hills, unspoiled, untouched. So much space, it seemed to go on for hundreds of miles and one could see to the end. Here came the mountain, and up we went. Not as steep as the Pyrenees, but pretty close. The scenery well made up for it, and at times this beauty took my breath away. I tried not to concentrate too hard on the cross and what I would do.

Cameron asked me what I’d do and I told him I’d just let it happen. As I was looking around, I did wonder on what hilltop it would be.

Stony path and much steeper then. A hard way to walk. Cameron would walk behind me, urging me on, giving me some of his energy again. Then some way off, I saw it. A frog had taken up residence in my throat lately, long enough to name it: Timothy. At the cross I saw dots of colors, red, blue, yellow, white, and green. Bicyclists stood at the foot of this cross. I slowed a bit, not wanting to have a whole audience. Cameron had asked what else I would say or ask for.

I said that I would pray for my daughter, so that she would have the courage to create a better life for herself, and thus be able to have the peace that she so craves. I would pray for my grand-daughter, that she would know the difference between a good time and disaster, and that responsibility doesn’t make a person sick. I would pray for my son, so that he could let go of childhood hurts, and be content and successful. I would pray for my grandson Dylan, that he would find his path, in spite of the troubled past. And for Kaleb, that he would keep going and that no matter what he did it would be all right.

I would pray for my niece Fiona, of course, so she wouldn’t be so terrified of getting cancer again, and could enjoy life and do fun things. For my sister, so she could have some time for life as well. A little prayer and blessing for Carrie, and then a prayer for my friends and other people who are important in my life.

I sensed that Cameron was getting emotional too, because he kept cheering me on. I was afraid to turn around for fear of starting to cry. I had to let go of all that regret of not being able to do a do-over. He asked me if I remembered that he’d written in social studies the person he admired most, and I said yes, happily recounting that memory, that this was in fourth grade and most of the other children had chosen to write “Luke Skywalker” or something. Under “My Hero is . . .” he’d written “My Mom”.

And then after that, he said, “Schiab’st a bissl’”, and I said, “Oh, Oma’s here,” and he said, “She’s been here all along.”

We arrived at the bottom of the stone pile. Into my head came the name montagne misère. The cross was tall, into the blue sky. The first third was covered with lots of different stuff that people had attached to it all the way around. T-shirts in all colors, a bicycle helmet, and plastic flowers. Buttons, ribbons, pictures, and cards.

Things left behind at the Cross

I took my rock and my PET scan picture out of my backpack and went up. I fell to my knees and offered this tumor. I remembered the pilgrim I had met the day before, for just a few minutes, not speaking any language in common, but he’d said, insha’Allah, which is Arabic for “as God wills”. And that’s what I was thinking as I lifted the tumor up. Not in English, not anything Catholic, just insha’Allah.

I was not going to demand, but to ask with grace. Then I just started to cry. Covered my face, and got up. I buried the picture between two rocks and left it there. I was still trying to formulate prayers for all the other people in my life. Cameron came at one point and put his arm around me, crying too. Thus we stood.

Carrie and Mom at the Cruz de Ferro

Walking off the hill, there stood Carrie, crying too. And then she went up and left her stone. When she came down and stood there, with tears running down her face, I folded her up in a big hug. We spent a little more time, quiet, solemn, and then went on.

The path away from the cross was really nice — wide and smooth, and I remarked that this could be indicative of our “new beginning”.

I had visualized the tumor just hanging by the kind of thread a spider would make, and as we walked I saw the tumor fall, lying on the camino ground as a dried-up mass.

On we went, through more beautiful, vast, and green countryside. Up a long hill, down the same long hill, and I was sure they’d moved Acebo another ten kilometers. Surely we had walked 16 already? This was the middle of nowhere, and nothing, except hills and a wide expanse of land. Far away, I saw a few rooflines. Finally we made our way to the village.

El Acebo

Another alpine look, with a small road through the town, and typical slate-and-stone houses on both sides of the road. There was the albergue, and we were soooo hungry. Immediately, we got our credentials stamped and ordered lunch. Me: bean soup, and some sort of meat dish. Cameron and Carrie got an odd-looking concoction, a little sack filled with odds and ends — bones and cartilage? A chorizo sausage sitting on the side, potatoes, garbanzo beans, and cabbage.

My dessert was pineapple and syrup right out of the can, with that distinctive tinny taste (do they think it can’t be tasted?). We went upstairs to our dormitory to choose our beds and shower. Only two toilets for 50 people. I was so ready for a nice, hot shower after that long and dusty road. We went to the store, the only one, bought a few groceries for the next day’s journey. Then Carrie lost her little wallet.

Later, at dinner, the waitress was really glad to see Cameron. She was delighted to explain the wine, even brought the chef out to consult. She touched his shoulder, his arm, and smiled, and flirted. Carrie and I were so amused. She didn’t touch us!

We ordered a different dinner. I ate the same soup and a vegetarian plate, with lemon mousse for dessert. Cameron remarked that if he’d had any love handles, he’d have lost them by now. I said, “Me too.” Carrie said, without missing a beat, “All I lost was my wallet.”

She’d even gone back to the store to check again. I told her not to worry. Went to bed, read a bit, and slept most of the night. No snoring.

Got up to use the toilet. No water to flush??? Too tired to deal with it. Went back to sleep. Woke up again when the guy in the next bed left at 5a.m. Took my thyroid pill (lost Lipitor somewhere near St. Jean along with my self-inflating pillow). It’s very difficult to take medication on this trip. But I miss my pillow. Bathroom again, still no water. Wow. They turn it off at night! None for brushing teeth.

I went downstairs to use that bathroom. No water. I went to the clothes sinks, and sure enough that worked to brush my teeth. And had hot water, even though when I washed my clothes the day before it had only cold water. (I left my beloved cup there!) I looked up at the star-lit sky and it was beautiful. So many, and so clear. I wished I would have brought my jacket, I’d have stayed for awhile.

At 7:45 we went down to have coffee before setting out. Nice walk, with pastel skies, and I felt good and capable. Carrie said, “You’re hoofing it this morning!” I said I was like a horse out of the chute. Then came the hills. Up a rocky one, hard, and down steep, long rocks. Stopped after a couple of hours to eat our makeshift breakfast. When we reached Monte-something, we stopped for coffee. Another picturesque place. What a great day, and fabulous weather, still.

The walking was going well, and through pretty little places. Then my toe started up. I changed shoes. After a while, I felt a lot of pressure, and had to take my sandal off, limping into Ponferrada on my sock, with my shoe in hand. We may stay somewhere other than the albergue to sleep in for once, as we have to take the bus once again for a few miles.

Sarria

No idea what day or date it is, but here we are, in the historic section of town and the albergue. No kitchen to speak of, and some people slathered on enough Ben-Gay to gag a maggot. I couldn’t sleep anymore after that. I sneezed several times and got up.

Started at eight, it was still dark, but the countryside was exquisite. Fauna and flora, green meadows with dew and tall trees. The enchanted forest. And around a corner, guess what?

A steep climb.

This one is for Fiona, I said to myself. My niece. We saw a huge, strange-shaped tree, but it’s too dark for a good picture. Up I pant, and finally, the top, and glorious sunrise. I sang, “Oh, what a beautiful morning / Oh, what a beautiful day.” And it truly was. What a magnificent jewel – Galicia.

It’s green and orange. It’s abundant, with so much different foliage. The sky is deep blue, the berries are red, like Colorado, and we are amazed and grateful for our good weather this whole trip.

My toes were down to a mere little whimper, and I really enjoyed this walk today. “It warms my heart,” I said.

“The whole trip warms mine,” Carrie replied.

How special she has become to us, how very special she is, to take this hardship on. But all of us are so glad we are here.

I feel a great sense of well-being. I said so, and Cameron took a picture. 100 kilometers, I read people start to get emotional. I started to be emotional. I find myself in tears at any given moment. But the latest may be due to this wonderful music at the Mercadoiro albergue, played by two Catalans.

We got a great hydro-shower, blasting out of many faucets, and then a free washing machine. Loved this spot, and then had conversation with a few more Germans.

The Cross of Chemo

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Chemo and the Cross

A week before I left Newark for Bilbao, I called Mom’s doctor at her request. “I wasn’t able to hear everything he told me about the cancer,” she had said. “Can you call him and talk to him? I don’t want to know what he says right now, though.” A few days after I left a message, he reached me in New Jersey. What follows are my largely unedited, contemporaneous notes of our conversation:

Reminds me she had ovarian cancer ten years ago last January. Treated with surgery and chemotherapy. They have followed her with CAT scans and PET-CT scans. The latter uses a sugar molecule that goes into rapidly dividing cells, such as cancer, and so those cells take up the sugar and create hot spots on the scan. They found three hot spots in May 2010. The pelvic spot went away, he says he has no idea why. [It went away after Mom radically changed her diet.] There were then two others, one higher up in retroperitineum and one in the top of the right lung.

She saw a doctor in Germany who convinced her that she should stop treating them with careful neglect and so we took one out of her lung. It looks like it’s not ovarian cancer, it’s lung cancer. Unfortunately, they save tissue only for five years, and while he wishes they had never thrown out her cancer slides [from when she had ovarian cancer 10 years ago], there is now no way of comparing the two.

Her recent surgery got completely around the one in her lung and it was small enough you wouldn’t do anything else. Now we’re left with the one in the back part of her abdomen, the retroperitineum. It’s in a touchy place to have a radiologist do a biopsy, located between the inferior vena cava and aorta, neither one of which you want to hit with a needle. Any biopsy would have to be done surgically.

If the lung cancer had been ovarian cancer instead, they could have convinced the radiation therapist to use radiation. But it looks like lung cancer, so the radiation oncologist isn’t keen to give radiation to what he doesn’t know. Both cancers will respond to radiation. He recommends she consider surgery, have it removed, then put in meda-clips so radiation therapist knows how far out to radiate, and radiate. Another option would be to cut as much out as possible and then do chemotherapy, because ovarian responds very well to chemo.

In February 2006 the last spot first showed up in a PET, 15mm, size of a dime, and in later scans it was 12, then 20, 19, 18, and in March it was 35mm in Europe (a little bigger than a quarter).

So she’s decided she’s going to do the Camino del Santiago [sic] and come back to get another PET scan, in October or November. See if it’s still the only spot. Options:

1. Surgery and biopsy
a. Consider chemo
b. Consider radiation
2. Radiate without a biopsy. He says it’s a good question to ask (as I did) why it matters defining the cancer, if both respond to radiation. The radiation oncologists say it’s not proven to be cancer and they don’t like to radiate that. Why not? I ask. Because radiation has a lot of side-effects. It would be close to her spine and intestine, could give her chronic problems, adhesions, diarrhea. 5000 rads in traditional radiation. Would CyberKnife (he calls it gamma knife) be a better idea to avoid the radiation? Yes, but it’s very expensive.
3. Do nothing

CA-125 score has gone up and down and so is not reliable as a measure.

I ask about the Stage 4 conclusion. Why is there not more urgency? Because they’ve watched it for five years and it’s not any worse, he says. Some would say when ovarian comes back, you do nothing until it becomes symptomatic. Some think recurrent ovarian is not curable, so one just controls symptoms (he’s not sure he agrees it’s not curable). He has one patient who had ovarian cancer 20, 15, and 12 years ago, each time with surgery and chemo and has not had a fourth recurrence. Everyone else who has had chemo in his practice has not had it go away.

Inge feels normal, and it’s hard to talk people into doing something when they feel okay. More spots, or the existing one in her abdomen, near her spinal column, growing would be ominous signs.

Radiation would be trying to hit a quarter-size spot. Blood vessels tolerate radiation well, but spinal cords don’t. Too much radiation could paralyze a person.

Would he recommend the gamma knife? She hasn’t seen the radiation oncologist in Montrose; doesn’t want to do so if she’s going to try the CyberKnife. He wouldn’t pay $50K to do it if one could do traditional radiation with high likelihood of few side-effects. He says the radiation oncologist in Montrose should give an opinion.

I ask about the nausea that was so bad for Mom the first time she had chemo. There are anti-nausea drugs available that were not on the market ten years ago, and the one she tried at $350 is now generic, and so cheaper. He has also had good results with patients treating nausea with medical marijuana.

He would not give chemo without a tissue analysis or biopsy. The chemo treatment is different for ovarian versus lung.

Is there ever a time when it begins to make sense to do scans more often than every six months? With her history, he says, no. Because things have changed so slowly over many years.

He says all of us, including physicians, in this day and age have to be judicious about how much we spend, else we run into intolerable debt.

When you’re hiking with her, you might suggest, Get that PET scan and then make a decision about doing something.

What are the risks of surgery to remove and biopsy? Inge’s pretty healthy, he says, she could do that pretty safely. Four to six weeks to recover. Risk of adhesions and thus bowel obstructions years later. Any risk of hitting the wrong thing? I ask. Yes, because you’re trying to remove as much of it as you can and doing so between two blood vessels that if nicked could cause bleeding. But surgeons are pretty good at working around it, and even if there is a lot of bleeding, they can clamp it off and close the hole. It’s easy for me to say, he says, I’m not a surgeon, but I’ve heard of that happening and surgeons take care of it. But you could get in there and find that it’s socked in around the blood vessels, get a biopsy, and get out. Put clips on it so that the radiologist knows exactly where it’s located, so you know exactly where you’re directing your radiation beam.

I say thanks as if to get off the phone. But he wants to summarize again. Adds that treatment for lung cancer, once it spreads, is more difficult to deal with than ovarian cancer. So maybe it’s time to do something definitive with this one in her ab-domen (he says it like this – ab-do-men). Any kind of cancer doesn’t typically grow this slowly, as slowly as the one in her lung and in her abdomen. They’re really not changing much, almost unheard-of over five years. Whatever she’s doing, I wouldn’t change it. Of course she’s really gotten religion with her diet and exercise in the last year, but whatever she was doing in the four years before that, that was working too.

Running away from chemo

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After I was re-diagnosed, spring time, a year ago and it was suggested to have surgery and chemo, I put a GOAL into my mind. Something to plan and to look forward to. A more pleasant distraction. I wanted to make my cells happy. Visiting my family (what’s left ot it) was on top of my list. I had not seen my brother, sister-in-law in over 7 years and, of course, we all got older. I worked extra, sold a few things  and made plans.

I thought I’d share the places I went and how my endorphins just went nuts with joy. I felt such a sense of well being, of wonderful peace that I was in tears half the time. I said prayers of gratefulness and thanks for my eyes that could see the beauty. For my senses that could take it all in and amazement at the miracle that is our planet.

 

This is Nuernberg. The Fortress on top, middle, is over 1000 years old.

 

 

This is Wuerzburg. I went to see a prominent lung specialist and had a CT scan and bloodwork done. (This is the castle).

This is the stunning view out of my brothers’ living room window, in Switzerland.

 

Forgot the name of this town. 🙂

 

Sunday Outing. Breathtaking mountain splendor.

 

A different ‘Camino’. It’s called “Jakobsweg’. All stations of the cross on a steep mountain side, each a hundred meters or so away going up, up. I managed up to the fourth. (Had no water or proper boots.)

 

Frauenkirche Dresden  

My sister, niece and I spent some quality time together and drove to Dresden, former East Germany. This church was totally destroyed and only rebuilt by 2004. The dark spots, are original bricks. The cupola (top part) was a present from the British as a gesture of healing forgiveness, on both sides.

It’s an absolute gorgeous, baroque architecture. We spend four days looking at all these treasures, rebuilt.

 

 

Famous Semper Opera House where I got to go and see a Mozart production. Happy cells.

Venice. My cousin and I spend 5 days there. Oh, how I loved Venice.

 

These are Carneval

masks. Beautiful art.

 

 

 

 

 

I went to Holland and Tulip-Blossom Time, all by myself. Very inexpensive bus ride. When I saw this profusion of color, of beauty, I thought ‘You can see paradise and don’t even have to die.’

     

Sorry, this would not let me rotate.

God’s present to us. Color.

A little more info – Avemar Wheat Germ

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I would have had a decent night’s sleep were it not for 2 crickets, that somehow found their way in. And, they’re talking to each other. Noisy blabbermouths and right now, I am not opposed to chemical warfare. I’m chasing through the house with a broom and catching a look in the mirror, looking like a deranged punk chick with this new hair cut.

After a long morning walk, yesterday was spent mostly doing research. One link led to another and so I came to a product called Avemar. Between a monthly pamphlet I receive and Internet reasearch, I am repeating quotes.

Without the dedication of one very determined Hungarian scientist, Dr. Mate Hidvegi and some divine intervention, Avemar might not exist. He had spend his entire savings and belongings on his research to find a safe way to cure cancer. He was flat broke with no prospect. He had no money but plenty of faith and so he prayed to the ‘Virgin Mary’ for guidance. The very next day a miracle happened in the form of a large check from an anonymous  donor. This allowed him to expand on the work of another visionary, Nobel prize winner, Dr. Albert Szent-Gyrgi. He had found that  special compounds in wheat germ could kill cancer cells without harming healthy cells.

With his miracle money Dr. Hidvegi was able to patent the process of fermenting wheat germ with baker’s yeast. A discovery he called ‘Avemar’ (in tribute of the Virgin Mary.)

Avemar is supported by more than one hundred studies including in vitro, animal, and human trials.  I have copied some of this from a pamphlet ‘Health Sciences Institute’ and I hope they don’t mind if I spread the word.

One of the many testimonials states:

Nancy was first diagnosed with breast cancer in May 2004, but it was already too late. She suffered through two mastectomies over two years- only to learn that the cancer had already spread to her lungs. She had so many tumors that her doctor went straight for the ‘big guns’ and enrolled her in a clinical trial…which nearly killed her. Just a single dose covered her body in blisters. Things got worse from there when she was told she would die if she did not take immediate action. Desperately seeking a solution, her partner found himself in a pharmacy right before closing, clinging to the hope that medication could reverse Nancy’s debilitating side effects. It did… three weeks later. And after that, Nancy’s doctors (deciding that she was too sensitive for chemo therapy tried another path: Aromasin (an estrogen lowering drug) which introduced a new set of side effect horrors.

That’s when Nancy designed her own treatment plan, one that did not include flooding her body with hazardous poisons.  And Avemar was the centerpiece. “I would not want to be without it,” she told the journalist. “I believe Avemar saved my life.”

Now, I am not suggesting that anyone, who’s battleing cancer give up treatment. I am only saying what I am willing to try. What also makes this different from others in the race of curing cancer is that the FDA has approved it. Not the usual step for many other products, claiming to do so. This does not sound like snake oil to me. I am willing to be a Guinea Pig.

The Cutting Edge

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Yesterday, late afternoon, my little buddy was here and we were just enjoying a movie and a sandwich when the phone rang and my ‘other’ reality interferred. Oncologist/Radiologist from Cyberknife asked to speak to me and then explained the following to me. (Very nice and patient Doctor.)

Seems that I am a candidate for this procedure. Seems it’s not quite that simple, yet again. Pro- there may be only 3-4 treatments necessary to get rid of that tumor. Con- there may be some damage to some areas due to location of that tumor. AND, I still may need chemo!

Conventional treatment: Surgery, would be more informative as they could check surrounding areas, IF there could be additional nodules, which then would be biopsied for positive/negative results. Then follow up with chemo for a better quality of life. (Sounds backward to use ‘quality’ in the same sentence with chemo.)  Still not an easy choice. Still wondering which road to take? If, if, if.

I have to wonder again, WHY they did not take this lymph node out 10 year ago? I’ve had two surgeries within 2 weeks.  That’s when they told me, afterward, IF this lymph node made any problems, it would be diffilcult to remove. (I had purchased a long, purple zipper which I’d put under my hospital gown , so when they’d took it off before surgery, they saw it laying on my belly. Message: You sew that in there for easier access. They had a good laugh about that.) So, now I’m stuck with this cancerous, enlarged lymph node, like some ugly souvernir and have to make these awfully hard decisions. ( Am I whining? Well. Sometimes I get to do this.)

Even though there were other health problems that came in rapid succession, I was always in gratitude and proclaimed, “As long as it’s Do-able.” It’s still do-able but in a more sinister way and it’s not leaving a lot of room for erroneous decisions.

There’s another choice: Cancer Centers. Closest one is in Phoenix. I have some good friends, living close by.

Before all of that, there’s still hope that some ‘miracle’ will happen and through this long walk on the Camino, my body will heal itself. Then, we do a P.E.T scan, bloodwork and SEE what happened. (Although the P.E.T does not show everything, either, I am told.)

I’ve been up since 4:00 A.M again and these thoughts are circling like big birds. (Sure hope they don’t turn into Vultures.)

Any medical voices out there that want to weigh in?

 

Eat fresh, organic and raw

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Well, at least raw twice a day. That does not mean a raw potato.  You don’t have to wait until you have a life-changing illness to change your lifestyle.

During my cancer journey, last time, I could barely eat anything. Chemo changed the taste of so many food items. Then, there was hardly any appetite due to long lasting nausea.

I would buy fresh products and create dishes. I would experiment with new items but what I neglected was organic. First reason, there was no organic market here. I’ve learned just because something looks green, or like a sweet potato, it doesn’t make it organic. It’s been sprayed into oblivion. It’s been trucked across and sometimes left sitting in the hot sun or cold weather. By the time, we pick it up, it’s been altered considerably. I thought I bought fresh. I did not know about mercury in fish. I did not know a whole lot about GOOD healthful food.

Then, about 3 years ago my health started to deteriorate. I had a myriad of ‘phantom’ complaints. I made the doctor rounds and no one knew what was the matter with me. I had heart palpitations. My hair started to fall out. I started to gain weight and had fluid retention. My eyes were so grainy and burning, I thought that I had severe allergies. My right kidney hurt. I had to go to the bathroom 12-14 times a day. (I went to the Urologist and he diagnosed me with ‘Interstitial Cystitis.’ This is when the mucuous lining of the bladder ‘eats itself’,breaks down. Very painful and chronic. Finally, I couldn’t stand the pain any more and went to a different Urologist, who diagnosed me with kidney stones. Geez. Eighteen month of pain. and a wrong call. I had a Lithotripsy to remove them. I finally got some Thyroid medication for the other problems.

Then, I got Plantar’s Fasciitis and couldn’t walk. It felt like I stepped on broken glass.  Months later, I finally saw a very good Foot Therapist and he helped with that. My friend Carla, tried to get me to eat ‘organic’. She  tried to impress its importance. She said, I needed to change my food. I kept saying to her, ‘ but I eat well and fresh. I can’t afford organic’.  When the lab report came back, it stated the stones were ‘calcium’ based, meaning ‘you eat wrong.’

On the right, this is what they look like The most painful ordeal. Child birth is a low 1 point on that scale!! This procedure cost $16,000. (Imagine the amount of organic food that would’ve bought.)

Finally, when I was re-diagnosed with cancer, 18 mos ago, I was so scared I changed my lifestyle over night! One of the first things I did, was, to appologize to my friend, Carla. For being stubborn, un-believing of her many years of knowledge and the gentle, loving way she tried to make me see.

I learned that even though, I knew a LOT about food and butter and cream sauces and wonderful dishes and pastries, I knew very little about NUTRITION. You can eat and still be nutritionally malnutritioned. That’s where the trouble starts. Your Immune system is falling apart, sending desperate signals of ‘symptoms’, which we ignore or, silence them with prescription drugs because hardly anyone is interested in the CAUSE. God forbid, we should do without that cheeseburger and lab-created, plastic maccaroni and cheese. Or, we think, that this only happens to other people.

I look at the many cooking shows where some designer Chef pours massive amounts of oil into pots and pans. Or, like the one lady who uses pounds of butter and sugar to make things taste good. Well, it takes a better chef to make food taste good without all that stuff.

Changing my lifestyle, even as a senior citizen, was the best thing I have ever done for myself. I’ve lost all that piled-on weight (43 lbs so far.)  No more pains, no more kidney stones. My skin is glowing, my eyes are bright. I have very good energy. I am full of Tatendrang (desire to do great things.) Some people do not really believe that I have cancer. How can I look, feel this good?  Well, I have no clue. The scans, bloodwork and tests say, I do. The first P.E.T scan showed 3 tumors. One in lower abdomen, this one disappeared with lifestyle change and never came back. One, in my lung (removed with VATS (1 at the inside of my spine (it’s the last one and that’s the one I’m researching for Cyberknife procedure.  (Remember? Non invasive, painfree, hard to get to place?)

I have renewed my attention and committment to eat better. I eat two raw meals a day (salad with 5-8 ingredients and home made, wonderful tasting dressings. I juice and do smoothies. I walk for miles, at least 3-4 days in the week. I feel great.

What I would like to impress on my family and friends, especially for my grandchildren, is, to start NOW. Start better habits. I worry about the sugar they eat, the bad carbs, the lack of raw, organic foods. Just think about it. Just love yourself enough to change.

The medical side wants to do surgery, chemo. I still try to hold that off and walking the camino is one of my ideas.