Category Archives: Cancer Therapies

Paging Dr. Chutzpah

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I came to Colorado near the end of February because my mother’s Denver surgeon had

What I brought from Oregon

What I brought from Oregon

said, unequivocally, that surgery on the last of Mom’s tumors would take place “at the end of February or in early March.”  Once I was already in Colorado, the doctor, whom Mom had told I would be flying in for the scheduled surgery, told us removal of the entire tumor would be risky, and was not viable.

Still, I’m glad I am here now to sort out this curious breed of people they call doctors, and to help Mom reason her way through important medical decisions.  I am finding that being a patient-advocate means being a very patient advocate.  Here I am, calling the proton therapy center in Loma Linda, California:

Me:  What do you mean you can’t take people with Stage IV cancer?  Why not?

Bureaucrat (not her actual name or title):  We only do the proton therapy on Stage I and II.

Me:  She’s not symptomatic.  Another proton therapy center thought that made a difference.  No?

Burcrat:  We only do I and II.

Me:  So is there some distinction, as regards proton therapy, that makes Stage I and II different from Stage IV without symptoms?  Or could it be a distinction without a difference?

Burcrat:  Stage IV is the stage we don’t do proton therapy on.

Me (trying another tack):  Can you tell me why that is?

Burcrat:  That’s our policy.

Kafka Was Lucky

The works of Kafka became famous for situations that make more sense than talking to someone who doesn’t know why her organization does what it does.  If only the woman had uttered one of my favorite lines from The Trial, in which two mysterious men materialize in Joseph K.’s apartment and are unresponsive to his queries, the day would have been at least aesthetically perfect.  In The Trial, Joseph K. eventually tries to leave his apartment, but the men tell him:  “You can’t go out, you are arrested.”

“So it seems,” K. replies. “But for what?”

“We are not authorized to tell you that,” he is told.  “Go to your room and wait there. Proceedings have been instituted against you, and you will be informed of everything in due course.”  And then the hilarious line:  “I am exceeding my instructions in speaking freely to you like this.”

K. tells himself this must all be a practical joke, or at least a mistake, for he lives in “a country with a legal constitution.”  But no.  K. is now in the surreal, irrational world that would come to be called Kafkaesque.

And I am in the world of American medicine, the bloated, inefficient thing we find ourselves stuck with in 2012.  I’m an advocate for my mother in a different kind of trial.  And one of the lesser trials is of our patience.

Witness our experience with the Denver-based gynecological surgeon and oncologist we met above.  We’ve taken to calling her Dr. Chutzpah.

Dr. Chutzpah:  Part I

Nearly two years ago, Dr. Chutzpah told my mother that she, Dr. Chutzpah, would not perform surgery on the tumor now in question unless my mother underwent chemotherapy afterward.  (Yes, afterward.  As if she could legally bind my mother’s post-surgery conduct).  My mother told the doctor that she couldn’t go through another round of chemotherapy.  The doctor said she would not operate without chemotherapy.

Last Monday, Dr. Chutzpah told us that the tumor is now too wound up with veins from the aorta to allow for a safe operation.  She also said that Mom has a mucinous tumor, and that such tumors are usually not responsive to chemotherapy.

Dr. Chutzpah to a White Paging Telephone, Please

So Mom and I unpacked that as best we could.

In order to perform critical surgery, two years ago, that could have prevented the further growth of the tumor, had she required a likely waste of time, my mother’s scarce money, your taxpayer money (Medicare), and, not least, a great deal of statistically unnecessary suffering?

So what should we do now? we asked, two years later.

Dr. Chutzpah suggested that Mom should go through chemotherapy, just in case it worked.

Mom and I were perplexed.  Hadn’t she just said this tumor was unlikely to respond to chemotherapy?

Dr. Chutzpah: Part II

In mid-January, Dr. Chutzpah told Mom to get another $8000 PET scan.  Mom had just had a PET scan in mid-November.

Dr. Chutzpah then had Mom and her friends drive over the Continental Divide, in January, to Denver, for a pre-op procedure – and then sent her home, saying the hospital in Grand Junction had failed to send the critically necessary PET scan.  Once Mom had arrived back home $400 lighter, Dr. Chutzpah’s office located the PET scan.  It had been in her office all along.

But then Dr. Chutzpah said the $8000 PET scan that she had ordered, and which was necessary to the $400, two-day trip to Denver, didn’t show the right information.  She called it “blurry”.  Then Dr. Chutzpah did an interesting thing.  She told my mother to get a CAT scan.

Now, you would think that if a PET scan had been the best choice all along, Dr. Chutzpah would have ordered another one.  Or, if PET scans had a tendency to be “blurry” or to be unlikely to show the object in question, Dr. Chutzpah would have known that and ordered the CAT scan the first time around.

So far, two PET scans and a CAT scan in 60 days.  Who absorbs this cost?  We do.

In any event, Mom, her immune system struggling with the fearful thoughts this confusing process was causing her, immediately went to St. Mary’s Hospital in Grand Junction and underwent a $4000 CAT scan (thank you, readers!).  The hospital again sent the doctor the CD.  Then we heard nothing for several weeks.  How to explain the time-sensitivity that says a November PET scan may not be current enough — but surgery can wait for several weeks after the third scan?  Maybe there is an explanation, but if Mom was given one, she didn’t realize it.

Mom’s nerves were fraying.  She wasn’t sleeping well.

Finally, Dr. Chutzpah left a message last Saturday saying she’d call Mom on Sunday.  On the appointed day, Mom chained herself to her phone and did not go out all day.  There was no call.

Late on Monday, Dr. Chutzpah reached Mom, said she’d called both of us earlier in the day (a curious fib in the age of missed-call lists), and said she hadn’t called on Sunday because, she said, “I thought you might be in church.”

When Mom (who does not go to church) got off the phone, she was incredulous.  “Did she think I’d be in church all day?”

This, too, affected Mom’s sense of trust, and well-being.

Dr. Chutzpah:  Part III — Primum non nocere, or First, do no harm

I watch these things with the eye of a consultant, a coach, a businessperson.  (And a comic, sadly).  I have been passionate about best practices and efficient systems since before I knew their names.  I’ve devised the best ways of doing things, used them, recommended them, helped others build them for my entire career.  And I too am incredulous — at the avoidable waste, inefficiency, and poor service I see in medicine.

Dr. Chutzpah, for example, does not have in place the fundamental operating policies a competently-run business has in place to make a real effort to respect clients’ time, money, and emotional energy (which is, or may as well be, the immune system).  Leaving aside the possibly wasteful scans, here are just a few policies Dr. Chutzpah could implement as easily as creating checklists for them:

  • Waste no patient money, I.  Establish a procedure to ensure that a patient does not even cross town, much less the state, unless the doctor possesses all the tools and information the appointment requires, including a PET scan.
  • Waste no patient money, II. Establish a procedure to ensure that a patient does not expend the time and money to come to an appointment unless all tools are in working order, such as clear PET scans.
  • Take responsibility. If doctor’s office does cause a patient to foreseeably waste time and money, the patient’s overall bill should be reduced to compensate for the increased expense caused by office’s negligence.
  • Pay attention to foreseeable consequences. If you know that a patient is making plans based on what you say, pay attention to what you say.  For example, if you haven’t yet reviewed the CAT scan that would alone tell you if surgery was or was not possible, do not set a date for surgery that others will rely on at their expense.
  • Do not substitute authority for evidence. When you do recommend courses of action, explain why.  Cite a scientific basis for a recommendation.  For example, if chemotherapy doesn’t “usually” work for a particular situation, give the patient, at a minimum, statistics for your interpretation of “usually.”  Better yet, provide the actual studies you are referring to.  Otherwise we have to wonder how cutting-edge your knowledge is, how good your memory, and how well you interpret data.  And because you’re a human being and I’ve read the research on medical errors when doctors don’t implement good systems, I don’t want to rely on you alone.
  • Have the courage to talk about ideas you disfavor. Please address those actions you do not recommend, even if you think they are absurdly alternative.  Because we are going to find out about them, and we will want to know the scientific bases for your dismissal of them.  We’re probably going to ask you anyway; why not be thorough and streamline things in advance?  (Another doctor inspired this addition:  When you are asked about alternative therapies, discuss them rationally and unemotionally, rather than with anger and contempt.  The latter is about your ego.  The former is about your patient).
  • Better yet, write it all down.  It is madness to expect a terrified person to hold in her head everything you tell her, or to take flawless notes.  The mind screams:  What are you thinking?

Dr. Chutzpah’s Last Ride?

Because no doctor had clearly laid out the options for my mother, nor written anything down for her, we were left with a raft of questions.  I called Dr. Chutzpah’s office and left a voice mail saying we had questions.  I asked for her email address.  I said that we would not rent, sell, or barter the email address, but if the doctor was concerned about getting inundated with emails, I could put the questions on a web page and they could view them there.

I mean, right?

Dr. Chutzpah’s nurse called, several days later, to say that I should leave the questions on their answering machine.  Twice she stressed that I should not be worried about leaving “a long message”.  In fact, I was quite brief.  I read off these questions:

  1. What is the primary cancer here?  We have heard ovarian and lung.
  2. How was the stage defined?  What does it mean to be in Stage IV without symptoms?  Is such a Stage IV not qualitatively or quantitatively different from more symptomatic Stage IVs?
  3. Is this tumor metastatic (spreading) from the primary?
  4. Why was chemo required 2 years ago when she’s saying now that Mom’s type of cancer typically doesn’t respond to chemo?
  5. Why not do a chemo compatibility test?
  6. What are your thoughts on partial removal of the tumor first?
  7. Can a biopsy be done without surgery, or in this case is a biopsy about the same procedure as surgery?  If the latter, does it not make sense to do the surgery in order to learn what kind of mass it is?

The next day, the nurse called us back.

“Dr. Chutzpah,” she said, “said that if you have so many questions you will need to make an appointment to see her.”

No, Seriously

“I’m disappointed to hear that,” I told the nurse, “because I think we shouldn’t have that many questions.  Their answers should have been included in a well-thought-out presentation.  And if there’s not going to be any medical exam, it doesn’t make any sense to travel all that way for a conversation that can be done by phone.  Does it?”

Eliminating the only remaining reasonable objection, I added, “We’d be happy to pay her for her time on the phone, but it makes no sense to drive four or more hours to Denver when there won’t even be a physical examination.”

“I will communicate your views to Dr. Chutzpah,” the nurse said.

 

Eleventh hour cancellation and more questions..

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Well. Knock me over with a feather! After waiting all day, Sunday for Dr.D. to call and being anxious about it, it never happened. Another beautiful day wasted and gone.

Monday morning I called Denver and left messages with Dr. D’s Onc nurse and the Co-ordinator. Another beautiful day was promised and I had enough of being cooped up. As soon as Cameron was finished with his coaching call, we got ready to drive to Ouray and have lunch. Mosey around that pretty, little town. I already had my coat on, when my cell rang. Dr. D. herself. She started out by saying why she had not called Sunday. She assumed I was in church. (Even if I would’ve been, I doubt it would be an all day service.) Anyway, I digress.

She then launched right into why surgery was not an option at this time. Seems that the lymphnode has wrapped itself in and around the vene (the aorta and therefor would be difficult and risky to remove.) I held the phone so that Cameron could hear her as well. She suggested ‘ a few chemo sessions’ first, to shrink tumor and then do surgery.

Although, this type of cancer may not respond well to chemo?? She said that it was a good thing, that the tumor showed so little growth in all this time. When I pointed out that my CA 125 numbers had gone down as well, she brushed that off as lab differentials, or something else. Funny, that! When these points had gone UP, my local doc and Ocologist, Dr. Giggles, both remarked how urgent it is that I see Dr. D. ‘You must do something soon’, they stated.  But, when those same numbers go down, they’re dismissed. Of course, I never mentioned that I am taking these supplements.

I used many of those idle Sunday hours to research. What I found was this:

The Promise of Proton-Beam Therapy -Us News and World Report

I had filled out their online info sharing form and at one point they’d call me. Free consultation.

We drove to Ouray, mainly in silence. The thoughts were bumping around in my brain but didn’t find landing a spot. We parked and went up the street to find a place for lunch. The early March sun, in this high altitude was wonderfully hot. Felt great behind my cloesd eyes, to soak it in. And the fresh mountain air. Since it is still off-season, there was not much going on. A few stores trying to get rid of long kept merchandise, with offers of 20-50% 0ff. In one window, a display of rings made of semi-precious stones, caught my eye. Not too much for $75.00 but… I don’t need more stuff. There would not be much joy in wearing this bauble with tumors’ Damocles sword hanging over me.

The  Vegetarian Bistro, that I’d been to before was closed. So, to Brian’s Pub we went. Semi Irish decor. The minute I went in, the cheap fry-oil smell was so strong, it made me want to get back out and breath. We ordered a Black Bean Burger with red pepper pieces and caramelized onions. I chose potato salad and Cameron had sweet potato fries.  I ate half the burger (which was previously frozen and luke warm) left the bun alone. Cameron ate the burger but not the fries. By that time I was nearly nauseous from that hot-oil-grease-smell. Since I have not cooked with ‘industrial’ oils/fats, this is an assault on my taste buds and senses. (See my recipe entry about Oil Change in the Kitchen.)

We walked to the book store and I purchased two books. My sleeping pills as I read in bed, every night. Cameron expected another work call, so we decided to drive home and pick another day for going to Box Canyon Falls.

My little buddy came to have help with weekly homework. In between trying to make 10 word sentences with him and preparing dinner, the phone rang. It was the Protone Docotor.

He asked me some questions about first diagnosis and recurrence. I repeated the diffilculty of tumor place, etc. He said, oh, Inge, I can get this.’ Told me of the many success’ they’ve had with inherently worse tumors and cancers than mine. One of the worst ones he’s ever seen was a CA 125 (Ovarian cancer) with a 12,000 number! (Mine is 52). Then we got to the REAL point. Cost. One treatment would be $1200.00-1700.00 and about 8 treatments would be required. I quickly figure this to be around $10000.00 Of course , added cost the flight and stay at ? hotel? I thanked him for his time. He gave me his private phone number, encouraged me to call 24/7. No Medicare help on that one either.

Meanwhile, I had received my reply from Professor Koebe. Quick as always to reply. Never have to wait to hear from him. He’s adamant that no matter how little could be removed, to do so. Not to mess with Cyberknife and doesn’t like the idea to start out with chemo. He suggested a vene graft. I would imagine, he means to clamp off either side of the veine area, then cut it all out and graft a piece in between to make the bridge.

When Dr. D. heard that, she immediately negated that idea. ‘People can die doing this and it’s not standard practise of care. Then, post care would be near impossible.

What to do? What to do? Where to turn? Who has the best, workable treatment? Instead of final clarity, I’ve got more, hard questions.  Where would I get this sum for Protone, even if I would want to try? We wasted nearly 3 months with back and forth. We wasted $16000.00 of Medicare’s money (hello, Dr. L) for 2 useless PET plus nearly $4000 more for CT. Already so much without any real help for me. (And, of course I have to pay 20% of all that.) The only one, working for free is Professor, Dr. Koebe. He gets a whole heart and ‘sack full’ of Thanks.

 

 

Prayers, Angels and Candles…

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As I was waiting these many weeks for a surgery date, many people were waiting with me. In various corners of the world. There’s my family (what’s left of it) in Germany and Switzerland. With e-mails, Skyping and phone, they kept in touch. There are my FB friends who inquire daily. Everyone wishes me well, supportive with words, deeds and prayers. There’s my good friend, Ingrid in Csakany, Hungary. The rest sprinkled across the United States.

My sister and niece, drove to Heroldsbach, Germany. A place in the countryside purported to have had a sighting of St. Mary in 1949-1952 by several children. The spot, where St. Mary was said to have hovered, had supposedly brought forth a spring. She told the children that this would be sacred water. To heal. This sighting miracle was not supported by Rome. But, this did not keep people from coming to this small village, by foot, by car and later, by bus from all over Europe. I had never heard of it, until about ten or so years ago. I was in Germany when my sister asked if I wanted to come with them. I was curious and agreed.

The place is beautiful. Set on a large, sloping meadow, fenced in with a discreet, unobtrusive, wooden fence and a well trimmed hedge. There are the 14 stages of the cross with altars placed in between. There are flowers everywhere.  There are also a lot of wooden crosses, in various sizes and weights, for serious pilgrims to carry, depending on what their self-imposed penance may be. In the middle is a small pavilion with several steps going down on 2 sides to the origin of the spring. You can see the small body of water underneath a polished, ornate brass grill.

I was having these undiagnosed, abdominal pains at that time and I placed my hand over this spring and said a silent, little prayer. A little further is a Glass Chapel with the statue of Mary inside. In front of her, huge profusion of flowers. Mostly roses.  A large book, on a stand is right by the entrance, where people can write their concerns for prayer intervention, into the book. All that St. Mary required for her help is that everyone would then give written notice of any healing they received. There are plaques all over the place, running up to the ceiling, all 4 walls. Mostly with grateful, short sentences. Mary has helped. Or, with heartfelt gratitude for our miracle.

Since we finally had a date for the surgery, my sister had called with the promise of driving to Heroldsbach and placing my name into the big book. As well as spending 5 Euros for a candle to be lit on the day of surgery while the good nuns would pray for a successful outcome. I was touched.

Then Julio wrote a very nice e-mail, that he too, would go to the cathedral in Bilbao, Spain, on the day of surgery to light a candle on my behalf.

My friend Carla and her husband pray for me daily. The cashier at the Natural Market also offers prayers. As do many friends and acquaintances.  I am sent Angels by e-mail, promising to keep watch over me. I should be well covered in Prayer Insurance.

BUT. There’s a bit more drama. Yesterday, I had just finished a nice, surprise call from Julio and Marianne with their happy news that they are booking their flight to the U.S. in mid April.  First they’ll fly to New York, where they will spend a few days, then take the train to come West, ending in Grand Junction. We made great plans and I told them we would have a fiesta with friends to welcome them to Colorado.

Cameron was getting ready to go skiing in Powderhorn, which had just received about 2 feet of new snow. Sort of a last hurrah before the medical route with me.

I was scurrying around, letting my friends know that we have a pre-op date and went on last-minute errands.

When I came home, the light was blinking on the answering machine. Without much of any thought, I pressed the button. It was Dr. D. from Denver. She said that she and the Oncologist/Surgeon were looking at the latest CT scan. (She thanked me for getting it done as it gave them a different view and perspective of this lymph node that had gone beserk.) Then, continuing, she said that they had grave concerns as the tumor had intertwined with the veins in such a way that there would be great risks in removal. She would call me this morning to discuss this in person.

Needless to say I was stunned. I felt like I had been running and someone put a stick out to knock me off my balance in mid run. I just stood there and couldn’t even manage to produce a thought. The next thing, CRAP. What NOW? If there are grave concerns, should I even go ahead? Of course, I don’t know the detail of these concerns but I don’t like the sound of that AT ALL!!  Next thought: Well. Maybe back to Cyberknife. Also. Write the Professor in Germany, ask him if he had received copy of CT scan and what did he think?

Then. Must do more research. Maybe alternate is my other only option? How do I get this damn blood-sucker out??? De ja vu!  I was in this spot months ago when I agonized over the decision to even have surgery. It took such great, inner force to wrap my brain around being cut (“fileted”). Now, I have to again entertain different course of action? Should I have chemo first? To shrink this tumor and then surgery? Should I check into Proton Therapy? How is this different from Cyberknife? There’s one in Loma Linda, they’ve done this procedure longer than anyone else. As I understand it, the machine is 3 stories tall and cost EIGHT Million dollars. But is painfree. I filled out their online intake form. Someone will call Monday and explain it to me.

I’ve also drafted an e-mail to Cyberknife Oncologist. There are still all these alternate centers. GEEEZ! Nothing easy about me and my stuff. More prayers. More angels and more candles are needed.

Bye, New York- Hello, Denver

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I am a lucky person.

Met my grandson in Denver and we flew to New York together. Dylan grew so tall in the four years I had not seen him, that I did not recognize him and had to call my daughter, who called him, to find him. My daughter with grandson Kaleb came later. What a most generous present from my son, to have all of us together for the Holy days.

We stayed at the home of Cameron’s buddy from Harvard days. They generously moved to couches in the Living room, to make room for 4 more people. And, we did the town. World Trade Center with the perpetual pools. Somber mood and sadness, running fingers over the carved names of so many people.

Madame Tusseau’s wax museum.

Ripley’s Believe it or not. Carriage ride around Central Park. Fifth Avenue with Christmas splendor deco. Ferry ride and Statue of Liberty. A special treat, going to the movie in Greewich Village, ‘The Way’. Cried some just for the recognition of what we had done and places we’d been.

China town, twice and good Vegan food. I’ve just really loved every minute of it and we walked 4-5 hours each time. My 8 year old grandson was just fascinated with everything and chattered, asked, talked. He also walked every bit without complaining.

But, all good things must come to an end and so on my last day I caught a cold and brought it home.

Bills, lovely christmas cards and a few presents from friends were here. Also, a call from Denver University Oncology Dept. I suppose that my reluctance to do chemo had resonated with someone as I have two appointments. One with Alternate Doctor and one with Surgeon/Chemo Doctor. I also have been offered a ride and Laurel said she would take off work, if she had to, to take me. Others, living in Denver offered their homes.

So, on January 11th we shall leave and head over the mountains, once more.

I’ve come to a point where I will do whatever is necessary to make this cancer history. I will also use ‘meditation and visualisation’ techniques to help myself and not keep predicting that I would get so sick. Mind over matter.

I’ve received the nicest note from German Professor-Dr. Koebe, (Hans-Guenter) with good wishes, encouragement and general up lifting. I wonder whether he would realize how much these notes help me? The same for his secretary, Marion. These are people I’d only met twice and I know he’s a very, very busy man and yet, he takes time out to pen a few words because he’s kind.

I really can’t help but compare Dr. ‘Giggles’ to him. And, the former falls way short. Professor Koebe tells me not to worry about ‘stuff’ and concentrate on Austria/Tirol trip in fall. To look forward eating potatoe balls and ‘Palat Schinken’ (a really good speciality) as this helps more than any medicine. His good thoughts and wishes will accompany me and to keep my fine spirit. Maybe he’ll even read this and knows that I am really grateful.

My son is in holding pattern, ready to come on a moments notice. My daughter is helping with love and support. She felt sad that she can’t be here and help as well but there are children, school, etc.

Thank you, my wonderful family and special friends. My little buddy, who always lights up a room.

Happy New Year.

Musings

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As I am waiting on word and schedules from Denver coordinator, I am in a fog-like state of limbo. I am still researching and still holding out some hope.

Cameron came, the other day, driving his big, red scout across the many miles from Bend, OR., to Montrose. He had brought odds and ends from his former life including his big, brown leather chair/office. It now squats in the living room as a silent reminder of his future presence and changes of things to come. His willingness, kindness to put his future and plans on hold is an amazing gift. Also not lost on all friends who will be involved with  support and with chemo care. (At the same time, I am researching different chemo availability.) Now, he is en route to New York as we will spend Christmas together with my daughter and grand children, all put in place before these changes. I am very much looking forward to a ‘last fling’ before surgery/chemo.

We definitely need someone to help cook.

As I reflect on some of the parallels of last cancer journey to this one, I see many changes in myself. Last time I didn’t know diddly. Although being informed is not a doctor’s dream of a compliant patient. Now we can challenge and argue and ask and suggest, (for all the good it does.)

I’ve been corresponding with a friend from my courthouse days. (Bailiff that I was and loved it immensely). She’s going through cancer as I write. After my dis-enchantment with this oncologist, who in the last 20 min of our meeting talked solely to my friend, Monika and ignored me completely, an attempt of reversed psychology? Once home again and when the smell of the place had dissipated, the more I thought about his manner and behavior toward me, the less I cared for him. This is where my friend comes in as her experience was very similar to mine with same doc.

She is very happy and well cared for by Oncologist in Grand Junction. I shall call and ask to be accepted there as well. Tired, disppointed of these two, here.

One of the things I’d suggested to my friend was to have a visible goal to concentrate on and to look forward. This helps immensely on stronger brain activity, over powering negativity.

When I had cancer 10 yrs ago, I had taped a fold out from a magazine, showing gorgeous pictures of Tuscany, to my entertainment center. When the time was rough from chemo, in between vomiting and general misery, I would look at the pictures and mentally climb the stairs to the tower. There were 52 of them. I would imagine, walking through the colorful market and hear the cries of the vendors, offering their wares.

Three years later, I had the good fortune to go to Germany with my BFF Irene and my son. My cousin, generously loaned us her Lincoln Town car to use. We drove to Switzerland to visit my brother and sister-in-law. He was still Chef owner of this his little Chalet Hotel, Rubschen. We had 3 mavelous days there with the best food. He’s such a gourmet genius.

On we went through Italy. Staying at wondrous places, seeing beautiful, old towns, villages and country side. We came to Lucca (birthplace of Giuseppe Verdi.) The big car could not be driven through the small streets and we parked it outside the city walls. On we walked on cobble stone, narrow roads to the town square. And, there it was… the tower I had seen so many times in a much smaller version. I nearly fell to my knees with the joy of actually being there. Of being alive to see it. The gratefulness I felt was overwhelming. I ran over to see the steps and yes, there were 52 of them. Florence was anticlimactic to Lucca, for me.

Now, once again, I am searching and selecting a goal of a place to tape up, to strive toward.

A few years ago, I was in las Vegas visiting my BFF and we went out on the town. One place had a small, colorful tent with a ‘gypsy’ woman offering to read our future. Full of vim and vinegar the both of us laughed and said ‘oh, why not?’ I take these predictions with a grain of salt. But, a few came true. One thing she said, was that I would live to be 93, after a health challenge. I remembered that, the other day and so I wrote it on a large piece of paper and taped it to my kitchen wall. A visual reminder of what could be possible. In case you shake your head, I will hasten to tell you that I choose to believe this prediction in place of a more dire one a doctor told me, ten years ago. He’d said, that I would only have a 60+ percent chance of survival. Even though, for most cancers, this is a good number, I, who didn’t know diddly at the time, said to him, you don’t even know me. If I turn this number around, it becomes 90+ percent.

Just a matter of engaging different thoughts to take an entirely different course. It’s a choice. YOU can tink yourself better or you can think yorself into a dark place. I want a sunny spot for my future and, have some more moments of joyful recognition when I come upon a chosen place.

‘Gotcha’.

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Looking at the title of the blog is almost mockery. My lofty illusions. My brave attempt to keep my body safe from harm. Yesterday, I folded. I aquisced. I capitulated. I gave up.

After more research for more natural treatments and found only slammed doors bolted with large money locks, I agreed to see local cancer center oncologist. Came highly recommended by my Dr.

A little before the appointed time, I arrived and my friend Monika, met me there (for support.) When they built this new Cancer Center, I used to drive by on my way to visit a friend. They had a huge thermometer looking board where they tracked money collected to finish this project. I remember thinking, I will NEVER go in there. Funny, isn’t it?

The appointment was for 11:30 A.M. I had to wait one hour. I found that to be rude and of course by that time, the place and its meaning had done their toll on my blood pressure. The nurse took my bloodpressure and fever indicator and pulse. Climbing up like my cancer marker. I wasn’t sure why I needed all that just to get information. But, … rules, you know.

Finally Dr.K. came in with a young lady (I imagine to observe how to handle a stubborn patient who clings to alternate medicine.

He took apart the treatmend possibility of Cyberknife. Too risky and not thorough enough to remove the ‘Squatter’ lymphnode, now a large blob. Only surgery will do this and also look into surrounding area for possible, espcaped smaller, cancerous culprits.

He took away Metronomic chemo, saying this is only for colon cancer. He took away holistic clincis as quackery. He said they used to try the hyperthermo treatment, where they removed the blood ‘to boil out’ the cancer but more died. So, they gave it up. ( My doc had informed him very well of what my ideas had been.)

He was, One of Those.

He alluded, since I’ve waited so long, maybe even Dr. D. (whom I ran away from 19 mos ago) couldn’t remove the tumor by means of serious surgery. That, perhaps radiation was the only way left. This intricate surgery can not be done even in Grand Junction. I must go to Denver and Dr. D. is the best. He said, I needed the BEST.

I’d told him, in the beginning of our talk, about the lifestyle change and its first, promising success. He said that, You don’t do away with cancer just by a diet!’  giving a dismissive wave with his hand. I replied, with all due respect, that indeed I had removed one tumor and even the ‘bad’ one had retreated a bit  and no one was going to take that away. His expression was mildly condescending and I could see the words “Gotcha’ imprinted on his forehead.

I  swallowed the bile that threatened to rise and I added, that even by waiting this long, it was perhaps to get ready for this fight as I am in the best shape I’d been in a long time. I imagined myself standing up and motion to pick up a mantle and say “I am the Warrior Queen,  You may get me now but I will determine the rest.

They will send my medical records to Denver and in a few days I will know the date of my consultation with Dr. D. I wonder, if she’ll say, what took you so long? Or, I knew you’d be back. (Tail between my legs.) Right now, I’m just concentrating on breathing, in-out. So as not allow fear to rule. I don’t want to ponder the particulars of this ‘intricate’ surgery and all the things that ‘could’ go wrong. The ‘could’ word, with which they scared me into submission.

What did I do after this meeting? I went to the Organic food store and bought some more ‘Dessicated raw liver’. Then, I went shopping to buy a few things, luckily on Sale, for my trip to New York. I will do what I see fit as far as my food-lifestyle and supplements are comcerned. Maybe, after chemo, even go to a nice Wellness place, to remove the toxins and poision out of my body. I am going to have a Wellness Sale. (Anyone want a diamond wedding set? A men’s Turquoise silver bracelett? An antique painting with a scene from Russia, in Winter, with a Daka lighted windows?

Friends are gathering, once again, to help with loving support. To stand watch outside OP to pull me through with their Love. My daughter, sending up her own wishes in prayer and support. My son, prepared to come at a moments notice, to mop up vomit.

I will not dismiss God’s Grace in all of this. That, even though He did not accept my offer at the cross, that He’s given me all these months, to experience, to enjoy these marvelous gifts of travel and The Camino.  That I am in the best physical health, otherwise. That was his generous gift to me. I just didn’t see it right away because I was so focused on the THINGY being gone.

I have my moments. Stark fear and shaking terror. I remember. I remember. I think, even Mother Teresa had her moments. Can’t be Pollyana 24/7. Must be allowed to deal with disappointment and change of venue.

Fifty reasons..

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Sunday started out rather nice. I had found a German channel on T.V. that played snappy music. I cleaned house to that and gleefully did the polka and waltz while dusting and waxing. When I was done I watched a beautifully done fairytale.

A friend came by and we had coffee and just baked Gingerbread Muffins, which were divine. After she left, the phone rang and it was my Doc. After not hearing for nearly 2 weeks it startled me. So. He expressed his great concern and launched into a thorough explanation of what I should do and why. (I think I covered that in a recent post). The risks were covered as well. Surgery would not be an easy one and as previously stated, the lower bowls are in the way! Once the cancerous lymphnode was removed, clips would be used to mark the spot for later radiation. And then, for good measure the dreaded, long avoided, running away to do the camino, CHEMO! There it is. I can hardly stand to look at the word.

Then I fell apart. Just howled with the memory of pain and crap and that I would have to do it again. I could barely get my breath. If they slipped, horrible things could happen. That was a bad night and a very long one. Friends would say, why didn’t you call me? I’m open 24/7. I said, well I could not have talked.  Dawn took a long time coming. This long time… the blue hours. I have to catch my emotional equilibrium again. Spirit, don’t leave me now. Strength and faith— where are you??? Someone else said I can imagine how you feel. NO. You. Don’t. I was just a quivering mass inside, scared out of my wits. I was caught. Just like an animal in a net.

I feel my control is slipping away. I have to bow to their treatment as the others are now too ureachable. Moonwater.  I said to him, wow, now I have to go to Dr. D. with my tail between my legs to do surgery. (She was the Specialist from Denver University, whom I saw 19 mos ago.) The one that lit my fire to run away. And look, what all I have done in that time. So, no. I’m not sorry nor filled with regret. I am  soo proud of what I’ve done and so very pleased all the places I went to think it over. But now, I am at the end of my tether. The things I ground up, swallowed, mixed, pureed, cooked and ate raw. The vitamins and irons I faithfully swallowed. The good thoughts I thought. The optimism I stroked so tenderly. I have to work hard to recapture this again.

As I commented the other day, they can kill me but they can’t eat me. I will be up once more and I will put my warrior coat on and I will fight for the best life I can have. To even get another chance is a blessed gift from God. That the cancer has not spread throughout is remarkable. To have removed the largest one JUST with lifestyle changes, was enormous. I am in the best shape, physically, that I’ve been in, in a long time. I am not defeated.

So. I start marching.

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??

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?