Category Archives: Cancer

Mom at the Cruz de Fierro

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Camino de Santiago - El Cruz de Ferro

This post is a continuation of Mom Approaches El Cruz de Ferro – the Iron Cross of Letting Go.

By the time Mom had removed her pack and gotten out her rock from home and the rumpled copy of her PET scan, all the other pilgrims had miraculously disappeared from the rock pile, save two who stood a few feet uphill from me.  In a field to our right, a tall, bearded man in his fifties was sobbing.  Mom made her way unsteadily up through the rocks.

One thing Catholics, the original pilgrims of the Camino, really understood is ritual.  Ritual is a mindful creation of a sacred space.  It was clear Mom had thought about how she would create such a space.

From the bottom of the pile of left-behind stones, I turned on the video of my camera and watched her kneel down, a small figure compared to the tall wooden beam in front of her.  I felt Timothy lodge in my own throat.  The two pilgrims

What is left behind

took their time leaving, perhaps magnetized by the sight of a man, weeping, holding a camera on an old woman kneeling at the foot of a cross.  For several minutes she knelt there, offering the copy of her PET scan, with the tumor circled in red, and a rock from Montrose.  These she placed under two rocks.

After a while, I handed the camera to Carrie and walked up the rock pile toward Mom.

Inge and Cameron at El Cruz de Ferro

She had stood up, and I put my hand on her lower back.  She began to cry, and I inclined my head to touch hers and cried with her.

For a lower-bandwidth version (not High Definition), click on The Cruz de Ferro.

Mom after letting go at the Cruz de Ferro

 

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.

Mom Approaches El Cruz de Ferro — the Iron Cross of Letting Go

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Rabanal to El Acebo: Little Switzerland

I love the smell of cowshit, at altitude, in the morning. I’m not being glib here. It’s earthy and real, but most of all it reminds me of many of the happiest times in my life, at my uncle’s hotel-restaurant in Braunwald, Switzerland. The mountains between Rabanal and El Acebo, across a narrow valley, were shorter and below treeline, but somewhat reminiscent of Braunwald, one of my favorite places on earth. For nearly the entire day, we would walk high up on the other side of the valley ourselves, for long stretches on the ridge line.

More modern windmills on the ridges of mountains in the distance. Cold. I have on three layers, Icebreaker wool 200 weight and 320 weight, which I ski in, and a light windbreaker. Light wool gloves and a skullcap. Only my toes are cold, in spite of the five-toed wool socks. When you separate toes, as with fingers, you lose heat.

We stopped near the top of a ridge to watch the sunrise, a brilliant orange orb sending its warm light over the cold landscape. Mom was wearing a white scarf over her head. For most of the rest of the day, I would walk behind her, imagining myself supporting her, willing her upward.

We stopped in Foncebaden for Second Breakfast. It’s one of my favorite times of the day, Second Breakfast. Foncebaden itself is crumbling down. Of the few stone homes, about half are abandoned, their roofs stove in, the rocks in their walls straining to fall out like an old man’s teeth. I found out later that the albergue in Foncebadon offered – wait for it – a yoga class in the mornings.

As we walked, I asked Mom if she wanted me to dial up Beethoven’s “Ode to Joy” for her on my iPod when we reached the cross.

“No,” she said. “I’m going to be emotional enough. I’ve got all sorts of emotions going on.”

“Such as?”

“Well, first, I’m just grateful I’m here. It still boggles my mind. And I feel hope. I see that tumor just hanging by a thread, and maybe when we reach the cross it’ll just fall off. All the research I’ve done says fresh air is very important in curing cancer. And exercise. We’re getting a lot of that. And no sugar. I should have already starved it by now. But I’m trying not to have expectations. Just drop the analysis and let it be. And then sometimes I get a frog that comes and sits in my throat. He’s there so often that I’ve given him a name.”

Carrie and I waited for the name. Mom was climbing, huffing.

“Well?” I said. “The name?”

“Timothy,” she said. Carrie and I laughed. We kept going up, scanning the horizon for a tall cross, the Cruz de Ferro.

Carrie was now up ahead. Mom went on. “I’m also thinking of all those who’ve passed. I think of Candy, that she has the courage to make a happy life for herself. I pray Brianna will find her way. For Kaleb to continue on his great path, but whatever he does is okay.” She walked some more, still going uphill on the rocky single-track trail. “For you, to have peace and contentment and be able to let go of anything from childhood that may still be with you.”

I sang to her a bit of sing-song that she used to sing to me in the car when I was a boy, when we drove with my grandparents through Germany and Austria on the seemingly endless trip to my uncle’s hotel-restaurant in Switzerland. “We’re almost there, we’re almost there.”

She nodded. “Schiab’st a bissl’, schiab’st a bissl’”. This was my grandmother’s Nieder-Bayerisch for “push a li’l”. “Oma’s here,” she said. “That came right into my head.”

“She’s been here all along.”

“Yes, she has. They’re all lining up now, all of them from the past.”

Scrub oak, yellowing, growing brown. The trees are short as far as the eye can see, a sign of harsh winters. Some pilgrims say they’ve heard it can snow here in summer. An Italian couple walks ahead of us. Heather lines the path, some of it already dying. My toes are still cold. My nose is running, sprinting, hurdling, as I once did not so long ago, and in the far-away past.

The path goes all the way up. It’s all single-track now, and rocky. We are gaining 1000 feet in 5 miles. “I’m going to have a heart-attack before I even get to that stupid cross,” Mom said.

I’m suddenly struck by the thought, What will I leave behind? I hadn’t bothered to think about it. I didn’t even bring a stone, or anything else, from home. I have had some thoughts come into my head. Is there anything remaining from my marriage or divorce? Any regrets, guilt, resentments? Should I let go of the fear of committing myself to writing, and all that implies? I walk on without having decided anything. I had a few more kilometers. Maybe something would come to me.

Suddenly we saw it. About two hundred yards ahead. The cross was made of a 25-foot tall wooden beam with cross-beam and stood atop a 15-foot pile of rocks. I had read that the original pile was created by Pagans. Just as many churches were converted from or built on top of Pagan temples, the Christian symbolism here was built on the rubble of Pagan religion.

More than a dozen brightly-colored pilgrims milled about the rock pile. I could see them

Up ahead, the Cruz de Ferro

posing for pictures. A handful of bikes were parked next to the pile. My heart sank. This was the space we would try to make sacred? But Mom was forging ahead, walking toward the cross as if pulled by a magnet.

“I Want to Go to that Cross and Leave My Cancer Behind”

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The Energy Meridians of Mother Earth

I had heard people say that the Camino runs along on one of earth’s energy meridians, also called ley lines. I’d heard that in pre-Roman times, people of the Pagan religions, and, later, Christian mystics, walked the Camino route from Santiago to Leon, and which in its entirety, as it covers seven sacred sites corresponding to the seven chakras of the human body, is called the Celtic Camino.

The ley lines of the earth are said to correspond to the energy meridians of the human body, as in Chinese medicine. Throughout the world, indigenous peoples have viewed the earth as a holographic representation of the human form. The great travel writer Bruce Chatwin described the connection between the Australian Aboriginal people and the land they walked, and sang out loud — in a wonderful book called The Songlines. Lucien Lévy-Bruhl, speaking of the Aborigines, said “The land is a living book in which the myths are inscribed . . . A legend is captured in the very outlines of the landscape.”

The Camino is also said to perfectly parallel the Milky Way, and some people believe that by following a path so powerfully charged with energy, a person is more likely to have intensely spiritual or religious experiences. One etymology of the name “Compostela” argues that it comes from Latin campus stellae, “field of the stars”.

Does this refer to the Milky Way, or to the belief that the bones of St. James made their way to Santiago from Israel (in a boat, in seven days) and were found when a shepherd spotted a star and somehow deduced that the star, billions of light years away, hung in the sky over a specific spot — the spot where the bones were interred and where the cathedral of Santiago de Compostela now stands?  If you are able to replicate this feat at home, please leave a comment in the Comments section.*

I picture a line of druids solemnly walking the same path, oak staffs in hand, white-haired and regal like Gandalf in “The Lord of the Rings”, to Finisterre, literally “end of land”, or what was then believed to be the end of the known world.  But the Celtic Camino actually runs from west to east and back again: it stretches from Santiago – its start, in the first chakra – to Leon, Spain and Toulouse, France, and finally to Rosslyn, Scotland. Even today, some people walk this route, which has them walking against the current of the Camino de Santiago pilgrims.

Some people believe that the tomb that allegedly contains St. James’ bones (again, a dubious claim) does not, in fact, house the remains of Saint James, but of a pagan priestess, and that the Catholic Church, as it so often did with Pagan churches, symbolism (e.g., the fish symbol, Christmas in place of the winter solstice, the god-man born of a virgin and a god) and rituals, took advantage of the pre-existing meaning assigned to the Camino to spread Christianity as far and wide as possible. Yet another theory holds that if there are any remains on the spot, they belong to Priscillian, an ascetic from Avila who was beheaded by the Church as a heretic in Treves, France, in 385 CE, but who was venerated as a martyr in Galicia and other parts of northern Spain.

Here’s what I found on a website discussing the matter of energy:

As we walk and travel along this sacred path, we offer a healing to heal the split for Mother Earth, as we simultaneously heal our own split. We walk up Her chakras, and as we do, we offer our healing, our light and love to ourselves, and to the Earth along this powerful meridian of energy.

And this author quotes another, one Peter Dawkins, who says:

A certain pilgrim's footprint

A true pilgrim who pilgrimages in love leaves footprints of light. Many pilgrims leave many such footprints, and a well-walked pilgrims’ way can become a path of light. There are multitudes of pilgrimage routes crossing the earth, with thousands of people pilgrimaging them every year.

On the other hand, “Some of these meridians are polluted with . . . negative vibrational toxins such as battles, massacres, and the like. These vibrations are stored in the records of the land itself” – much as illness may be viewed as the storage of negative emotional energy – “reflecting back to its inhabitants and causing serious illness . . .”

If the history of the Camino tells us anything, it is that war was nearly continuous along it. Christians fought Christians, Moors and Saracens fought Christians, Christians persecuted Jews, and so on, ad nauseam. For most of the history of Spain, these wars were more about land and strategic advantage than religion. The Camino runs through an energetic wasteland of battles and massacres.

“Fortunately,” according to the same source, “these currents respond positively to spiritual impression.” And here we come back to the pilgrims, who walk it with prayers, mantras, and good faith in their hearts and minds. Once again, a practice that was originally Pagan has been superseded by Christian symbolism. Instead of walking along one of the great planet’s lines of energy, pilgrims redefined their seeking in a new narrative, a new storyline: We are seeking the legendary bones of St. James the Apostle.

The Human Scale

Mom said she’s been visualizing the energy blasting through her tumor. I’ve been told by more than a few people that my energy is palpable and can be felt in whatever part of a person’s body I direct it. I don’t know what to think of this, but I make a Cartesian wager when I place my hand on Mom’s lower back and visualize blocked energy getting unblocked, or see light and love flowing into her: there’s no penalty for being wrong, but what if it works?

Like the Catholics who would come later, Pagans often placed altars and other symbolism on the tops of mountains. Thus was the current site of the Cruz de Ferro, the Iron Cross, originally the site of a Pagan monument. It sits on the highest (or second-highest) point on the Camino.

The Cruz de Ferro, by tradition, is the place where pilgrims leave something behind. The place where they agree to let go of something. For months now, Mom has said, “I’m going to leave my cancer behind!” She has duly brought a stone, from home, and a paper copy of her PET scan with the third and last tumor circled in red.

And all of this has me worried.

 

 

* Another etymology is compositum, “the well founded”, or composita tella, meaning “burial ground”.

Choose Hope

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Dear Mom,

Your experience with the doctors who told you, ten years ago, that if your cancer ever came back it would be “worse than the first time,” highlights a real problem with doctors’ training — they sometimes seem to lack the training that would have helped them to understand what they do not and cannot know. It is simply unknowable that cancer would, necessarily, come back worse the second time, in every patient. I would go so far as to say these doctors are violating the scientific method by purporting to have such certainty, not to mention committing egregious harm to patients who are unable to get such words out of their heads.

At best, the scientifically accurate statement would have begun with these words — “On average” — and would have ended with “but we can’t really know, and your situation could be completely different.”

We hear stories every day of doctors who have told someone they had two weeks, or six months, to live — and the person lives five, ten, twenty years. Why would someone, lacking both humility, in the awesome face of their science, and certainty, nevertheless lay hold to claims of certainty that cannot be supported?  Perhaps they think it’s simply their job to have something to say.

But it is deadly arrogance.

Given the power of the human mind to do its body well or ill, doctors may do more damage with insupportable assertions of certainty about unhappy outcomes than can be done by the disease in question itself.

I would urge you to realize something your doctors can’t, which is that they have simply rummaged around in a grab-bag of received opinion and averages and pulled out loose talk, which they then handed you, like feces in a bag, for you to hold onto.

Don’t take the bag. Doctors know neither the mind of God nor nature, and it is simply not possible to state anything with 100% certainty, as they too often do.

You are free to believe anything is possible. And anything is. Let’s believe that, together. As between two unknowable outcomes, we can choose the one that gives us the most happiness, the most hope, and therefore the strongest immune system — and the best chance for survival.

This post has been adapted from what was originally a comment to Inge’s post.

Nightmares -“Daymares”

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Of course, that’s a made up word but since I seem to have nightmares even when I’m awake, perhaps it’s a new word. It seems that the peaceful, calm times are getting shorter. I wake up at odd hours from a night mare. I hear my doctor telling me, ten years ago,  that if the cancer came back, it would be ‘really bad, worse than the first time.’ I wonder why I had to have this information? It lay dormant for that many years only to emerge in the blue hours of the night.

My other doctor telling me, that if that small ‘thing’ on my spine ever became a problem, it would be very diffilcult to operate, if not impossible. So! These old records, echoing their voices from long ago, as it has become my reality. But, at the same time there’s new technology. There are different options and choices. They need to be more careful what they throw out, even when meant well. Goes to show how very powerful words are and not just from the medical side. The impact of careless words. Like wild horses. Once they’re out and gallopping, you can’t call them back.

I also dreamed that I couldn’t find my purse and ran all over the place, looking. When I did find it, everything was taken. Just an empty purse and at the sight of that open, black, gaping hole, I couldn’t breath. The remaining hours of interrupted sleep, stretching before me like a long, bumpy road. The crickets chirped relentlessly but I was grateful for their incessant noise. I know, I really do, that I could call my friends, even at that hour but what would be different? They’d lose sleep, too.

I had my son call my doctor and ask him a lot questions but I did not want to know, at this point in time.  I cling onto the camino like a life saver raft. Running away. How long is that leash?? I would love to unzip my skin and step out of it at those times. Even get away from myself. I am not a whiner, usually. I’ve dealt with a lot of set backs, hard knocks. But all of that was ‘do-able’ I don’t mind so much adversity in life as I’ve become rather good at dealing with things as long as it is ‘DO-ABLE.’

I’ve noticed I’ve also become somewhat short tempered at people’s ‘problems’. They’re having a bad hair day. They imagine their jeans make their butts look big. They broke a perfect nail. Their husband/wife is not listening. The laundry detergent is not making their underwear white. ‘Let’s trade places’. I know. I know. It’s not fair. It’s not their fault I’m saddled with this crap. I promise, this does not last very long. Only the time span of a Hummingbird cough.

I was so moved and touched to tears by my son and daughters’ loving support and willingess to carry some of this burden. My friends rallied around, coming by, spending quality time.

I drove to Grand Junction and visited my ‘adopted’ family. We went to have lunch down town. Lovely street, art work shops and restaurants. (Had salad and a Portabella. This one, on a rosemary-herb roll.) I actually wanted to sell some gold but when he offerd a low price, I kept it. Sentimental value was so much more.

Invasive thoughts are still there

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I’ve received a long e-mail from my only niece, who lives in Germany. Very talented, gifted and pretty young woman. Two years ago, she too, had cancer. She’d noticed a little blister-like spot on the underside of her tongue. She thought that this was from a tooth that had an uneven edge. When she finally went to the Dentist, he immediately send her to the hospital for tests. It was positive and already in her lymphnodes.

How I admire her for going through this horrid time. Of all places to get cancer, this is just awful.

She had one of the best micro-reconstructive, surgical teams, who, in an 8 hr operation, ‘cut’ her throat and amputated half of her tongue, then took a piece of flesh out of her upper arm and fashioned a new ‘half’. They followed up with precision radiation (cyberknife?) and she’s alright. Although she can’t ever have the simple joy of ‘licking’ an ice cream cone. All her food had to be pureed and she had to learn to talk all over again. (She’s doing very well on that account too.)

Meanwhile I received a copy of my pathology report and there it is, in black and white. Four impersonal, clinical sentences that are responsible for my interrupted- night sleep. I am not going to write the result here. I’m just a little superstitious! If I do, then it’s like written in marble and forever there. I don’t want to have these thoughts in my brain nor ‘here’. With each time that it is mentioned, it’s as if it’s pounded real some more. And yet…yet, how can I stop thinking?

I spend a lot of time researching. People send me lots of info. It would be a lot easier if I had a sounding board or, someone to bounce these ideas back and forth.

Another Doctor, whom I’ve talked with yesterday, also encouraged me to have surgery and chemo! What IS this, with the cutting?? And the chemo? I wanted to say to him, in a childish, little fit..’ well, you go have it then!’

Well. I don’t have to make a decision, yet. First, the camino. I can’t believe that I am actually going. This was only a fleeting thought, a couple of months ago and here I am preparing. ‘Behave as if it’s going to happen’ and I did. Bought only small, inexpensive items at first. Started hiking different places and longer. Started to research Camino de Santiago more and felt a growing excitement. As if it was calling me, pulling me there like magnet. Even when I thought I had to go by myself and woke up questioning my sanity, the feeling of having to go, persisted.

Now, I’m getting ready to go to the Black Canyon, this huge, gorgeous cathedral, for my Sunday morning walk , solitude and prayers of gratitude. .

Expectations

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‘Whatever we expect with confidence becomes our own self fulfilling prophecy’. I don’t know who wrote this but it seems to fit my present state of mind.

This ‘thing’ called expectation can blindside one as well. Whenever I expect something to go in my favor, many times it back fires. People’s action or lack thereof. Sometimes it’s a quiet, timid, little voice and other times it roars. I’ve tried not to expect anything and then when the situation comes, deal with it on that premise. But, it also sneaks in through the back door when, no matter what you think, there it is! You can drive yourself nuts trying to view all the options and not knowing the outcome. Just remember how it felt, when you were ‘waiting’ and expecting a call from someone you liked and had had a few dates. How we used to sit by the phone (before cell) and prayed for ‘him’ to call!

When I put my questions about ‘Cyberknife’ to various, medically educated people, among them a renound lung specialist, to gauge their opinion and help me make a decision I was surprised at the answers.

Two are totally against it. I’m still not sure of their reasoning except to say that they (cyberknife) just want ‘my money’. I realize this is still a fairly new technology.  Years ago, when they came up with Ultrasound, etc. that was considered ‘experimental’ as well. In the ‘old’ days, when people had kidney stones they had to be operated (cut open) to remove them. Now we have “Lithotripsy.” I’ve had that, too. It really beats cutting unless the stones are too large to move out.

Within the last ten years I’ve had a few surgeries. Let me tell you, if I can avoid them, I will. Say nothing of the horrid chemo and side effects. Last time with ovarian cancer and 2 surgeries and chemo, I was so sick I thought I am turned inside out and vomit my toenails. My bones felt ice cold and I was freezing. Aches and pains and uncontrollable shaking. Food tasted awful. Meat tasted sweet and coffee made sick, well, everything made me sick. With each additional chemo, it got worse. By the 5th chemo, I was ready to just want to quit and didn’t care what may happen. My well meaning doctor gave me 2 anti-nausea pills. One cost $350.00. I threw up both. Nature’s ‘war’ raging between the desire to vomit the poison (Toxil) and the pill repressing, was the worst day I’ve had. I could’ve had a heck of a party with that $700.00, ending up in a toilet bowl.

So, forgive me if I don’t want to have this again. I have also become a ‘coward’ with a yellow streak a mile wide, toward pain. I don’t tolerate nor like pain meds that well, either. This is why the cyberknife appeals to me. The cyberknife is: Painfree, non-invasive, shorter recovery time than conventional radiation and sometimes, one, two or three visits are enough to take care of the tumor. I don’t know, for sure, if I’d be a candidate but we will see. I will agree, that this is chosen for the above reasons and perhaps from an emotional side and not from a clinically ‘precise brain’.

Also, the thought occurred to me, would I still need CHEMO???

When I received a very nice e-mail from a medical expert, whom I respect and admire, I was surprised at his immediate rejection of this treatment. Now, I am stumped. I would like to know the REASON. However, his support of my upcoming trip and unflagging cheering of what I have done so far, as well as calming my fears, is a great source of peace to me. The speed with which I receive these e-mails are very impressive indeed, when one considers his schedule of leading a hospital. I will consider his advice. Just because I don’t agree with it at this point has more to do with fear of pain/chemo.

Its’ a good thing I still have time and can go on my trip. Like my doc, here, said:’ Maybe you can leave ‘it’ there and we won’t have to worry about it.” From his lips to GOD’s ear. (I’m still waiting on a copy that I’d requested over a week ago.)

This link answers a lot of questions and has a huge forum of people who’ve had it, want it or can’t be candidates.

www.cyberknife.com

 

 

 

Stockmarket feelings

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When the call came, I wasn’t prepared. I can barely remember what all Doc said except that my cancer markers went up. Not just one or two points.  Although not an exact science, we have relied on this for ten years. Now, I’m not so sure that I can outrun this ‘thing’. Time is not as abundant as a few months ago. My confidence is slipping and fear is raising its ugly head. My emotions have this Yo-Yo effect. Or, up-down like the stockmarket. (It did recover?)  My best friend held me while we cried. I didn’t quite realize how much I had hoped for lower numbers until they were not.

My son said not to worry. We’ll find the best treatment and  money. Friends rally and surround me with theit love and support. Even unknown facebook friends are right there with advice and encouragement.

Although I would be a good canditate for Cyberknife ( I still like the idea of no cutting, no pain best!) It seems that Medicare won’t pay for this treatment. They view this as experimental?? Really? Only ‘traditional radiation’ pay. If I had a Grandma, I’d have to sell her to cover these inflated costs. Should I research other ‘alternative options?’ Which one to pick? Which one is only smoke and mirrors? How can I make a reasonable decision when there’s molasses in my brain?

I have written an e-mail to German University. Not that I believe they’re better but so far, they’ve been cheaper. University of Heidelberg has a state of the art oncology-cyberknife center.

We still hang on to the thread of hope to ‘lose’ this 50 cent size tumor on the camino. I have enough time to do that.

Am I ungrateful in this ‘whining’? At least there are options. Many people don’t even get that much. Well, one thing for sure. I will have plenty of  quality time to think about any and all of this when I walk the camino. There are still miracles out there. I’ve had two, ten years ago, within six month of each other. But, that’s another story.

For those of you who would like to know what this Cyberknife is all about.

rocky mountain cyberknife center

Enema bag for sale….

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The past few days have been extremely busy, what with all this cleaning, juicing, preparation of food, very early morning enema, and occasional adjustment of attitude. After all this I have come to the conclusion that I am not cut out for this particular therapy at this time. I am still juicing just not hourly.

The sheer amount of food and cost was staggering as well the exhaustive way to implement all of it. Friends came and helped out with tasks as well as buying bags of raw veggies. (God bless good friends!!) My emotional equilibrium had hit a few pot holes, trying to manage it all. I had to stop hiking which gave me such peace and joy and this whole thing was becoming overwhelming and stressful.

After the fourth or fifth juice I was nauseated. No matter what I said to myself, I was a hair away from vomiting and my stomach revolted. No matter what I tried and I did try, I could not hold the enema liquid for longer than three minutes. ( I fixed the connecting tubing problem with Duct tape. My best friend.)

I remember, after the last cancer I’d said: ‘I’m almost grateful for the cancer because it taught me so much and I learned so much about myself and loved ones and attitude, faith and gratefulness toward things.’ While this was true, I know I carried this acceptance too far. The object is to get rid of it. That’s why I did not wish to ‘own’ it, this time.

I should not have created such a nice, cozy environment for cancer to move into. (Of course worry, problems, financial matters, errant cells, etc) did the rest as well. Cancer is a symptom. We must find out the cause and must become our own detectives in this search. Having a medical professional, who is supportive certainly makes things easier. Not always the case when opinions differ from main stream medicine. An Italian oncologist believes that cancer is a fungus.

I am in search of another workable solution to treat myself. It’s like the Holy Grail. Everyone you ask for directions gives you a different one.

I remember when I talked to Senior Physician at the ‘Hufeland Clinic’ in Germany. She said that, in some cases they opt for lowering a person’s blood sugar. Cancer cells are really hungry for sugar, so they receive it as it along with a low dose of chemo and this does the trick, sneaking past the guard. The cancer cells really slurp up that sugar, then sneaking to those cells and  ‘BOOOM’. In this case the cells get poisioned, not the patient. Do we know this approach, here? Makes sense to me. This is different than toxic overload chemo usually done here.

What I remember too, is that each Physician that I saw, here and across the big pond, was telling me how lucky I am. I was of course puzzled and not only a bit irritated. Here I sit and have cancer and they’re telling me I’m lucky! Then explanation was added. To have had that many years without recurrence is extremely rare. (It had been nine years). Especially with ovarian cancer. My Doctor had told me, way back that if cancer would come back, it would be very difficult! I really wish they wouldn’t tell you things like that. I stays in the back of ones mind. So. To have ‘only’ a few small, tumors and they had not spread, was amazing. The one in the lung, was right at the edge. Clean, without creeping ‘fingers’ and easy to pluck out. Which we did. Only one left. At the spine attached to the aorta. What a place to be. Very hard to get to. This one, I’ll walk off on the camino. (There’s a plan B as well.)

Tomorrow, more tests to see the internal picture and cancer marker. I have stopped all supplements, vitamins, etc. I want a true reading.