Category Archives: Cancer

Thumbscrews

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Flying to Denver

After many days of amazing peace and tranquility inspite of negative (or medical ‘positive’) news I went to Colorado Cyberknife in Denver. A good friend had secured buddy passes to fly there rather than our driving over snow-packed passes and enduring long hours. We would’ve spent more on gas.  I remarked how rich I felt just to fly to Denver, overnight, and maybe even get a bit of shopping in.

The Hotel shuttle picked us up and whisked us away. Barely put our stuff into the room and set off by shuttle service that took us to the nearest shopping center. (Nice Russian driver, married to German wife.) I spent very little.

The beds were a dream and I slept really well, until… this sound woke me at 3:11 a.m. …. snoring! For a second I thought I was back on the camino. I clapped my hands a couple of times and that took care of it.

The transportation to Lafayette was a quite a problem. There are no buses, except to get a cab to Bus station, get on, transfer twice and then it would take awhile to drive those 26 miles and then walk back to Cyberknife address. Renting a car was out of the question as I would not be able to navigate through Denver with all these crazy, speeding drivers, trucks and everything else. Especially, not knowing where I’d be going. My friend couldn’t drive as she’d had surgery 2 weeks ago.  Neither of us wanted any added stress and so we took a cab.

The driver had to use his GPS to find it as well. Cyberknife is a couple of miles outside Lafayette.  Nothing else there. We wondered how other people would get there? My appointment was 2 hrs away. Luckily, we’d stopped at a German deli and brought food. The recepionist was nice enough to make us tea. There are no stores or anything close by.

Cyberknife Disappointment

The nurse took us to the examination room, took blood pressure (was up a bit and I suppose I was a bit anxious, or, as the nurse said “because you are here”. I filled out pages of medical forms and possible problems, which went fast because I don’t have ANY, except for the little c. I don’t want to name it the BIG C since I think I am bigger than it.

More manageable that way too.

The oncologist, Dr. S., came and we started talking. He asked me what I knew about this tumor. I told him that, according to my doc it was a cancerous lymphnode, now the size of a golf ball.

“What!? What?” he exclaimed, startled. “I don’t remember anything like that.”  He turned his monitor on and there was my internal picture of organs, etc. Then, there it was. Colored in primary red. The Thingy, the cancer, the nodule, the beast. It seemed strange that this was really inside of me. I viewed it with curious detachment. But it was not a GOLF BALL. Not this round mass which I’d envisioned all this time. It’s smaller and rectangular and sits with squatters rights next to the aorta, feeding. Although that feast quite curtailed, lately. Starving it.

The risks are the same as with conventional surgery. The lower bowels are in the way to a straight shot to the back of the abdomen, to the spine. It would be a bit tricky but could be done, if not a desired 3-4 treatments but lowering radiation strength and having 10 treatments instead so as to not damage my bowels. Non-invasive and pain-free. This is the plus side. On the other side, it cannot detect anything else. My PET scan was clean in any other way, I said.

I asked Dr. S. about metronomic chemo, or RCT. He had not heard of either but was willing to check into it.

There could be recurrence and there could be this and there could be that. I would be treated as an outpatient. That means I’d have to get a hotel, nearby and for 10 days go there for 30 min a day. Then, nothing else to do in this ‘nowhereness’. Well, I guess I could walk unless the icy northwinds blow.

Survival for the Wealthy

I had researched and found another natural treatment clinic, in Arizona. The cost? A mere pittance. ONLY $8000 per week with a minimum of 3 weeks plus it’s out patient so there’s an added $1500 for an apartment. So, there I realized that all these gentler, healthier options are out of reach and felt defeated in that desire. Although, ther’s still Bad Mergentheim in Germany. Lot less and that includes plane fare.

I have not heard anything from my local doc. There was to be this meeting with medical professionals, discussing my case and giving recommendations. I had called to ask about CA 125 date. No call back. Nothing. I feel very much alone in this search and all the questions I would have. I called again and was told that Dr. had been out of town and was on an emergency call. Then, I received a call from local cancer center, telling me I’d missed my appointment. ???  I said, I have not been informed of one. We rescheduled for next week. This is on an information gathering only.  I want to be informed of ALL options and newer technology and/or treatments. I want the BEST because I AM WORTH it.

Being on this poverty level has now taught me, that this is what it is. If you’re poor, you’re screwed. You have to do what mainstream says or live (die?) with the consequences.

I was not very peaceful nor tranquil yesterday. I feel pressured by my well-meaning friends, who called in a steady stream, after my return from Denver, to ask “What are you going to do? What have you decided?” I had said, time and time again, I am going to make a decision AFTER Christmas. That I was still researching and working as hard as I can to help myself. So. I will tell them, PLEASE. No more questions. Stop asking.

I had sent Dr. Professor Koebe (in Germany) an e-mail, asking for his advice. As usual, his reply was fast and kind. He congratulated me on my ‘fabulous spirit’ and to keep that one up. He also put another, seemingly disappointing outcome into perspective by stating: “You don’t know how things were and don’t know what may have happened and what it was before you went to the cross.” Ohh, that soothed my spirit again. His advice is still, open up and go in there after it, examine and take care of it.

Other people have been working on my behalf and offered advice and suggestions. I will follow up every lead, gratefully.

Next decision would be, where to have surgery.

Brain freeze

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Can I trust my brain to make the right decision? Or, does it beat a path to least resistance? I think I’ve made good decisions over the past few years. I’ve tried to make the proper ethical, moral choices. In emergency situations, I did act and react with good speed and choice of treatment.

It’s amazing what one can learn when we start to educate ourselves and do not allow for pre-chewed ideas and opinions to cloud our minds.

Although I respect the genius of the cancer cell; it’s clever deception to sneak past the vigilant immune system, I do not want to get comfortable with it. Certain sources suggest that one should make peace with various, chronic illnesses. I feel that if I do this, I’ll become complacent. What with all this respect and mutual admiration, feelings of peace and light I am a complice and co-dependent in my own cell problem. Like a snake charmer who concentrates soley on the snake.

I shook myself free of this warm, fuzzy peace with cancer feeling and declared a serious Tumor Hunt. I have a few sneaky tricks up my sleeve as well to circumvent that tough, little outer wall of the C cell and obliterate it.  So there. This includes different measures at the time being. Holistic measures until I have assimilated all information, main stream medicine as well. It also includes very different culinary tastes.

Starting in the morning, upon rising, I take 3 enzyme tablets. For breakfast, 1 cup cottage cheese with 5 Tbsp Flax seed oil (from Johanna Budwig, German bio chemist who states that this will carry vital oxygen to the cells.) Add 1 tsp ground flax seeds and whip it into a frenzy to combine. To hide the oily-cheesy taste, I add frozen blueberries or other berries and this makes it tolerable and looks like a nice smoothie. It is very, very filling and I have to work to get it all down.

Then, I continue with the ‘Hufeland Clinic’ protocol, plus Tumeric, Curcumin, Vitamins: C-E-and B12, followed by the metals: iron, zinc, magnesium, copper, etc. More recently, added visits to Hyperbaric oxygen chamber.

After 1 hour I continue with juicing. Mostly carrot with apple and add ‘Green Pro’. Foul tasting and looking but filled with important chlorophyllic properties. I take fermented wheat germ which looks like dirt and when you add water/juice, it tastes like sweet mud. Yuk. Have to try hard not to get nauseous. But… this is not business as usual. I am working with everything I have to help myself so as not having to be ‘filet’ and filled with Toxins and poision.

Radiation Oncology Sydney Cancer Center studied 5 year survival rates of 22 types of cancer in the U.S.A and Australia. They studied 154,971 Americans with cancer, age 20 and older that were treated with chemo therapy. Only 3,306 lived to the 5 year mark. Study results: The overall contribution and adjuvant cytotoxic chemotherapy to 5 yr survival in adults was estimated to be 2.3% in Australia and 2.1 % in the U.S.A.

Cancer is a message. It wants to show you that something is running off the tracks in your life. ‘You go ahead”, said the soul to the body “because it’s not listening to me.’ “Alright’, replied the body, I will become ill, then he will have time for me.’  Although how this translates into children, even babies having cancer, I don’t know.

Another study, in Germany: Group A- 389  patients who underwent conventional therapy . (41.38 %)

Group B-patients who denied conventional therapy, including patients that could not be helped w conventional therapy methods. 312 patients (26.7%)

Group C: patients who did not even appear to consult and who’s fate could not be followed: 312 patients (33.0%

After 8 years, group A -only 102 (26.22% patients were alive with conventional therapy.

Group B- after 8 years, 183 were alive (85.11%) these were treated ONLY with Biological Conflict Therapy.

This is part of a treatment used in Germany. Brain scan is used to identify the spot, which highlights where those signals come from ad being sent and then this exact spot is treated with above mentioned thearpy. They also use a whole battery of holistic ingredients. ( Dr. Andreas Puttich, Darmststadt.)

Prof. Dr. Charles Mathe, leading Oncologist and Specialist for Oncology, in Paris, France stated openly: If I were to have cancer, I would not allow myself to be treated in  conventional cancer centers.  Only those cancer patients will have a chance to survive, if they stay away as far as possible. (Scientific Medicines Nouvelles, Paris.)

NOW, can you appreciate my dilemma??

Futile questions

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Yesterday, as I was walking, I reflected on the past 3 years. I was wondering, had my symptoms been recognized and not so easily dismissed, would it have made a difference? Instead of scrambling to find a treatment now and looking at so many difficult choices, not to mention extreme financial hardship, could I have had just a nice, peaceful, healthy life?

Three years ago, I had a backache. I ignored it for awhile, then it became worse. I finally went to doc. Told him my right kidney hurt. He couldn’t find anything. Went to another, who diagnosed some calcification in my “tailbone”. Still same pain.  Went to doc again and was referred to surgical center to have a series of shots into my spine. I’ve never felt such pain. But, after one ($1800) shot I did not return. Did not help. I said, my right kidney hurts. I felt I was being passed around like an old shoe.

This went on for 18 mos. Then I had additional bladder pains and frequent bathroom visits. As many as 15x a day. My doc sent me to Urologist. He did a test, inserting the scope without local anesthesia. It hurt so bad I came off the table. His diagnosis was “Interstitial Cystitis”. A chronic disease where bladder membrane is “eaten” away. Medicine cost, per month, $450.00. It was a good thing I could not afford that. Pain persisted. Made my own appointment with a urologist in Grand Junction. They said my bladder was fine and healthy and after (finally) an x-ray, it turned out I had kidney stones. Removed by Lithotripsy as an Outpatient and still $16.000.00

Next. Many different symptoms. Hair falling out, grainy eyes, swallowing difficulty, heart palpitation just to name a few. Doc said, nothing the matter except “old age”. My daughter worked for an oncologist in Alabama who diagnosed a thyroid problem just from these symptoms. I insisted on a test. The doc did agree and then called and said “It’s Normal.” I  said so was my cancer test. (Ovarian, 10 yrs ago. No one listened then either.) Base number is different than what is still used by many doctors. That’s why it shows normal; when it is not. All symptoms disappeared with a small dose.

Next: While in Seattle visiting my son for Christmas, I had a severe cough and spit blood. I thought, it was due to climate change and  harsh cough. Ignored it for the time I was there. Came home and it continued. Upon rising I had so much mucus I was afraid it would strangle me. Scared me.

Back to doc, who listened to my lungs, knocked on the back a few times and said, they sound clear, but did send me across the street, to Ear, Nose and Throat doc to check. He did put a scope down my throat and said I had an increased mucus production. I questioned that, since this had never happened before. I told them that I did not agree with this.  ( I believe this is when my lung tumor started. The cellular change.) When there’s cancer in ones background, would not a test be a good idea? We rely on the medical professionals to advice us.

Meanwhile, I was dealing with Plantars’ Fasciitis, which was hell in itself.

I was dealing with very stressful family issues. My whole body was falling apart.

Next. I was sitting on the couch, watching T.V. when I absentmindedly scratched my armpit. I noticed my lymphnodes were swollen. Well. I didn’t want to run to doc again, since I had the feeling I was thought of as hypochondriac. After a few days though, of increased swelling, I did make appointment. He looked and touched and said it was “barely” noticeable. Sent me to another doc, who said the same. Sent me home.  My CA 125 (cancer blood test) was steadily creeping up.

I FELT that something was wrong and would not be quiet. It was on one of those appointments, when I asked the doc if he ever had someone say that their blood was singing, that he paid attention. Immediate blood test which result was such that he told me to rush to the hospital for another test. Scared the beejeezus out of me, as they were saying that it could be a blood clot, which could kill me. (Thanks for the nice way of telling a patient.) It wasn’t. Then he said, “Well, we’ll just go ahead and do a P.E.T scan so we know once and for all.”  Just to appease me.

I did and that was the beginning of this present nightmare. P.E.T showed 3 tumors. One in abdomen (gone with lifestyle changes, never re-appeared.) Lung tumor, since removed with VATS, and now dealing with this last one.

Now I have Lymphoma stage IV. (is this a Roman 4?) Although I have not have had any of those symptoms. (Swelling has not re-appeared , except once or twice, since I’ve changed lifestyle.)

O.K. I got that off my chest and now I deal with whatever I must but I will have a say in my treatment of it.

On Auschwitz and Cancer

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For at least two weeks I have had in mind a post that addresses Mom’s PET scan and the expectations that so many people have about what will happen to her cancer now that she has been on the Camino.  I discern these expectations in what people say to Mom, in her telling me, a week ago, that she felt “pressure”, and in our tribe’s utter inability to stop telling ourselves stories . . .

But for at least two weeks, I have not found myself writing anything.  Why that has been so could justify its own essay.  It wasn’t until I read Mom’s “Cheers and Kindness” post of this morning (about her experience with her friendly townspeople and her wait for the results of the PET scan), and found myself crying at the end, that I began to write this post.  I don’t know where it’s going, but I begin anyway.  “I can’t go on, I’ll go on,” as my master and hero Samuel Beckett once had a nameless character say.

Humans see patterns in everything.  Hypnotize a person (as researchers did in a now famous set of experiments) and tell him to get up from his chair and walk to stand by a window, and when you wake him up and ask him why he is standing by the window, he will say, for example, “There was a cold draft, and I was shutting the window.”  Of course this is not true, but we now know that the brain searches relentlessly for explanations of everything it does not understand or does not wish to grapple with.

Not so long ago, we prayed to the sun to intervene

Just today I opened The New Yorker to read “It was an article of faith among the [Libyan] rebels that Qaddafi had regularly used magic to prop up his long reign.  What other explanation could there be?”  Lacking explanation, man often turns to the supernatural.

Stories are easiest to see in beliefs about politics and religion — two areas that, not coincidentally, wise people know it’s best not to argue about.  That’s because such beliefs are usually not arrived at by reason but by responses to emotion, and it’s pointless to argue with conclusions reached by emotion.  Today I saw one writer’s interpretation of New York City’s shutdown of Occupy Wall Street, as he looked at the site that once housed the 5000 books of the Occupy Wall Street Library:

What a picture it would be . . . of police in riot gear gathering boxes of donated books and loading them into garbage trucks. A perfect metaphor for what appears to be the intention of last night’s raid: destroying the body of knowledge that had been collected by a movement just two months old . . .

If you want to spot tendentious, made-up belief systems, look for words like “appears to be,” as in “the contents of another person’s mind appear to be an intention to destroy knowledge.”  A great many marriages founder on this one powerful impulse, that of imagining we know the meaning in another person’s mind.  All storytelling arises from man’s wrestling with painful sensations of ignorance and uncertainty — which is fear.  The results of this wrestling, this agon, we call myth, religion, fiction, cinema, psychology, ideology, doctrine, dogma.

So we see a woman walk across Spain on (and in) a dream and we

Mom displays good food on the Camino

continue the story.  She has cancer, right?  She wants it to go away, right?  And look at all that bravery, all that effort!  Look what a story so far, with all the blog posts illustrating the triumph of the human spirit!  Why, we’ve even got her in high-definition video!

It’s a story fit for the movies!

What is left behind

Except for one thing, we think:  we don’t have our ending yet.  As the writer of the Gospel of Matthew well knew, adding, as he did, the all-important Resurrection to Mark’s far more abrupt ending*, there can be no meaning without a proper ending.  And the only acceptable ending to this fairytale is, of course, that somehow, in magical ways we don’t need to understand but need to believe in, the walk across Spain – the exercise, the sun, the intention, the bravery, the purpose, God – cured the cancer.  I would guess that nearly every reader of this blog will acknowledge in herself this secret hope, this small buried voice whose sister whispered in my mother’s head as she approached the Cruz de Ferro with the earlier PET scan, with the cancer, she hoped somehow to leave behind.

I don’t need to understand how it can happen, we think, but I would love to see a fairytale ending.  I’d love to see God choose to play a role in this drama and give a woman her just dessert.

This is a way of thinking pilgrims were familiar with a thousand years ago:  surely if I go to all this effort, God will reward me.  The medieval Catholic Church validated this thinking, handing out “indulgences”, in its role as God’s mouthpiece on earth, to people who made some kind of effort – the Camino pilgrims, say, or the people, both wealthy and poor, who got karma credits with God for handing over their money to the Church.

Setting aside the Church’s confusion of money with divine will (and itself with divinity), all of this relies on belief in an intercessionary God — that is, a God who will intercede, or intervene, in human affairs, if we simply do something noticeable enough to catch “His” attention (a God who intervenes in human affairs is nothing if not person-like).

I would like to believe such a God exists, but then if such a God did exist, and either set in motion or stood by and did nothing for the shot, gassed, and hung-by-their-tongues Jews of the Shoah, or the Rwandans, or the victims of Stalin, Mao, and Pol Pot, I would find Him unworthy of the barest worship.  Either he is weak beyond imagining, or he is capable of ending unbearable suffering but lacks all compassion.

It is this God who is said to have died in the concentration camp at Auschwitz, and for people who study history and its lessons there is no resurrecting him.  Can there be a kind of divinity who intervenes in the cancers of mothers who do pilgrimages but ignores the cries of children in gas chambers?  I do not think so.  Not that kind, by that definition.

This is not to say divinity, or a consciousness that pervades the universe, does not exist.  It is only to say that I’m not able to believe there is a person-like entity who intervenes in human affairs.

If Mom’s cancer does not reappear on her PET scan, there are a number of possible reasons for it, from what science now tells us of the power of the human mind (in science’s belated validation of prayer and meditation) to what we know love and purpose can do for the human immune system.

I create meaning and emotion just by inserting an image in a particular place

Love and purpose.  Immune system.  For those who don’t credit an intercessionary God, these are the building blocks of their hope, vague as it may be:  Inge did that amazing walk, such great purpose, we all love her, we hope her cancer goes away now.

I do too.  And I too don’t care how it happens or whether I could ever explain it.  My mind bends toward the romantic and the idealistic as much as the next person’s.

But I have worried since the first moment Mom mentioned doing this trip that it would begin to work on her mind, whispering to her of salvation, giving her a hope — so powerful in the agon with dis-ease — that might turn on her if the outcome to which she had inevitably grown attached did not come about.  I have worried for many months about us measuring the success of the trip, or Mom’s chances of survival, by the same meaningless yardstick, the PET scan of November 14.  (See the end of my post a day before we reached the Cruz de Ferro, when Mom voiced aloud what until then had only been the whispers of going to the cross and leaving her cancer behind).

But the PET scan is meaningless, in the sense that it neither signals an objective truth — someone will or will not die — nor has within it a pre-fabricated storyline of what must happen next — of what it means.  We create the storyline.  Yesterday’s PET scan is just

Another Day on the Camino

another day on the camino, and just as there were days before it that did not speak of life or death, there will now come days after it that are silent on the matter.  The PET scan is just data; we supply the meaning of it.

Mom is powerful precisely because she gets to choose what meaning to assign the PET scan.  Doctors and others will look at a certain scan and say, “This is great!”  They will look at different results and say, “Oh, oh, my, this is unfortunate.”  They are, however, simply speaking from their own, inevitably blinkered, system of belief.

Mom can decide what storyline she will believe in, and as one of my favorite Taoist stories shows, her storyline doesn’t have to grasping for meaning prematurely.

Sometimes a horse is just a horse, of course

There was an old farmer who had worked his land for many years.  One day his horse ran away.  His neighbors heard the news and ran to see him.

“Such bad luck!” they said.

“We’ll see,” said the farmer.

The next day, the horse came back, bringing with it three wild horses.

“How wonderful!” the neighbors said.

“We’ll see,” said the farmer.

The next day, the farmer’s son tried to ride one of the wild horses, was thrown, and broke his leg.

Here came the neighbors.

“What a disaster!” they said, patting the farmer on the back.  “Your fields will rot if he can’t work the farm.”

“We’ll see,” said the farmer.

A day later, the emperor’s army recruiters passed through the village to draft young men into the army.  They saw that the farmer’s son had a broken leg, and they passed him by.

The neighbors, again.

“Such good fortune!” they said.

“We’ll see,” said the farmer.

All this is to say that the Lord moves in ways mysterious, not ways we can divine in our desperate interpretations of this event and that . . . In the absence of knowing, then, what we’ll see, we can

Give it a try -- supply your own caption

only let go of the need to know, which sometimes comes in the form of patience and other times forgiveness, and cultivate those states of mind — love, compassion, positivity — that lead to healing.

The “unfortunate” PET scan of May has unfolded into some of the greatest experiences of Mom’s life, not to mention mine, Carrie’s, and many others’.  Who, then, will claim to know that yesterday’s PET scan can be “bad news”?

That camino continues, and we’ll all be walking with Mom as she walks it.

 

* The original Mark ends with the women fleeing from the empty tomb, and saying “nothing to anyone, because they were afraid.”  (How the writer of Mark knew what they saw when they said nothing to anyone is another story.)  In Mark, there is no Resurrection, and without the decades-later additions of Matthew, Luke, and John, Christianity as we know it would not exist.

Cheers and Kindness..

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Yesterday, I had quite a few errands to do. First on the list, hospital billing dept. Just to finish up previous agreements. I had just finished cooking a pumpkin, potatoe soup with dry roasted pumpkin seeds and I thought, well, might as well take some to that office.  Then I packed up my pumpkin, hazelnut, cranberry and raisin cookies to drop off at Surgical Team.

I needed a bank statement, so that was first. Everyone smiled, waved and said  a friendly ‘good morning.’

As I walked to the billing office and knocked, I said “Meals on Wheels, for the shut-in’. They have such small cubicles. One has to really work at not getting claustrophobia. The receptionist wanted to know about my lifestyle diet and that took up a bit more time. (Have some good leads for cooking classes.)

That business done and it was quite pleasant, I left for my next visit. At the Black Canyon Surgical Center, I parked and took my cookies. When I came in, I said ‘Good Morning. I’m Inge’. They smiled and said ‘we know who you are. We saw you in the paper about the camino.’  Another lady said, ‘we are so proud of you. I hope I would be in this shape when I get to be that age.’ Another chimed in with ‘what a teriffic accomplishment’.

I told them that I was absolutely thrilled and touched by their card. It was better than a shot of Vitamins. They said that Dr. Jay was the one who suggested it. I told them, I’d be by visiting but didn’t want to come for an appoinment. (Did anything like that ever happened in a big city?)

Next, Natrual Grocers and more people coming up to shake my hand and congratulate me. Then I saw Steffi  (daughter in law of my good friend, Carla ) and she was just filled with praise. She said everything would be alright, she just ‘knew’ it.  In the check out line, one lady whispered she would pray for me upon hearing about P.E.T scan appointment.

As I left the store, I reflected what a very nice and friendly place I’m living in. I think, that in all those years, there’ve only a couple of unfriendly or rude people. From the Post Office to Grocery stores and other businesses, everyone is nice and welcoming. I especially notice the difference when I go to another city or country. We live in a very nice place and people come together to help when needed.

I’d send my good friend, Shirley, an e-mail asking if I could stay with her, if Holistic clinic in Scottsdale accepts Outpatients. Shirley was my boss back in the days of Judicial employment. We’ve been very good friends since.

She replied with love and kindness that she would absolutely be there for me, take me there, etc. If she couldn’t, then her daughter (and my special friend) Garci, would. So, if things have to go that way, there are movements in place. It’s being pro-active that helps. Not just standing still and bemoaning ones circumstances.

I’ve had a few shaky moments this morning, wondering about the result. Wishing with all my might that I do not have to utilize all these plan ‘B’ preparations. ( a.k.a Let this cup pass.) But, I know I can’t change the outcome. Only my reactions and how I’ll deal with it. I only have 30 min left on my allowed time to eat. So I will make some oatmeal with grated apple.

Originally, my friend Monika would’ve been coming with me this mornig but she had an emergency operation. So it’s just Inge and Inge. (Yes. There are two of us in this town.)

I will let everyone know what the result is as soon as I get them. Either way.

Two days to go..

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As I am waiting on P.E.T scan appointment I’ve been very busy researching my options.

Time is  somewhat of essence now and no more playing with it, nor running away. There’s a wealth of information to wade through.  Family and friends have been helping to find possible solutions. So many different approaches and everyone claiming theirs is best. Cancer, especially Lymphoma stage 4 as they claim,  does not leave a lot of room for erroneous trials. I still do not have any of those symptoms.

I have had an offer for a holistic treatment, handed down by many generations from Shaman’s. Even for free. A most touching and generous offer. This person would even come to my home., or have me at theirs, or even go to Shaman.

In the end I must decide. That is a very scary thing to do. What if it’s the wrong decision? Should I have done anything different?  I feel very much alone in this. Uncharted waters. So far, I’ve not had a strong feeling that I would be on the wrong track. So far, I’ve not freaked out. I am not trembling with fear as I have at previous times when results had increased. I am peaceful. Maybe this is what I brought back from the camino?

I have started on a new supplement, recommended by a trusted friend as well as the others I’m taking.

In yesterday’s mail, arrived an envelope from the Surgical Team. At first glance, I thought it was another bill and so it was with delight and joyful laughter that I read the card, which showed 3  letters on front -‘WOW’. Opening it, there was congratulatory sentiments over my accomplished camino miles and bravo’s to keep it up. ( I will bring them my wonderful Pumpkin- raisin- hazelnut-cranberry, low fat/low sugar, cookies.)  Also, a lovely card from Julio and Marianne.

Going back to my research this morning, I’ve found a place in Scottsdale, AZ., called New Hope Unlimited. A different approach. A holistic approach under controlled circumstances with a huge medical team at one’s disposal. Combining traditional medicine with holistic but one is give a choice. This feels like a good decision. Tailor made for what I would like to have happen while my body is still ‘pristine’ without chemo/radiation and thus can respond readily. I am already on lifestyle ‘diet’. Now, we just have to find out if Medicare will pay?

 

 

 

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.

 

 

 

 

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.