Monthly Archives: January 2012

Flurry of e-mails

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Since the last 12 days and most them of them without any word from Denver camp nor Montrose, I had Dr. D’s words running incessantly around my head. ‘Maybe we can’t remove this tumor surgically.’ I was in a deep shock. So, how else can it be removed? She did not address this issue. I imagine, perhaps it would be chemo and for good measure, radiation.

I had a call to my doc, here, well, we already went through all of that. I even called again. No answer. I felt totally alone in trying to figure out what to do with this huge problem.

Several e-mails were sent back and forth to Professor in Germany, who was my only link. He replied at once, every time.

I’d sent medical records and scan results. He answered promptly and was concerned, as the tumor had grown and did not see why we had to do another, expensive P.E.T. When I told Professor that Dr. D had stated she ‘may’ not be able to remove tumor, his next e-mail said, ‘if this is so, then to come Wuerzburg. I’ll be here for you.’

Denver co-ordinator had called Thursday afternoon to schedule a P.E.T scan, in Denver, for the following Wednesday morning. I was totally stressed out, how on earth could I manage to get there, again. Who could drive? Where to stay? How to get around? I don’t have unlimited funds. I’d spend over $350.00 on the last, useless trip. I asked, if I could have this done in Grand Junction. I said, I don’t live around the corner and to expect me to come there for a scan and then be told she may not be able to do surgery, was unreasonable. Unless they could tell me, why a P.E.T in Denver was more sophisticated than the one in Grand Junction. (I had called my son while coordinator was conferring with doc and he led me through the mental maze.)

She called back to tell me that this was alright and they’ll set it up. My blood pressure has been really high with all these stressful talks, then e-mails to figure out, if I had to go to Germany, where I could convalesce? How much would that surgery cost?  All my adult life I’d paid into Social Security, to have some help in my ‘old age’. Now, that I was finally old enough for Medicare, I’d have to pay 100% over there? NOT fair. Not fair at all. But, to even have someone offer this kind of help has me very emotional.  In one e-mail, he wrote that he could not open the disc and so could not look at it. But, he was sure he could do surgery.

(Remember? Dr. D. had not looked at it either but cautioned, that she may not.) I’m not giving up on her because she is good. I need good, or, as they said, ‘the best’.

Yesterday morning, my friends, Monika and Inge B. and I, drove to Grand Junction. They’ve been with me, for every P.E.T scan, starting nearly 2 years ago. It had been snowing when we left. For a large part of the way, there was very thick fog. I was so very thankful that I did not have to go to Denver, over those passes. I would’ve stressed out a lot more.

The ladies at the reception recognized me and were glad to see me, although not glad (she said) that I had to be back. The nurse, who inserted the catheder, also remembered me and said, ‘How nice to see you again. You’re just like a breath of fresh air when you come.’ I had to be poked 3x before it my veine finally agreed. She also gave me a large cup of (nasty tasting) thick, contrast. Then, to lay down, resting in the big chair. Curtains drawn all around. You can’t read. You can’t talk. Just laying there. For nearly an hour. That’s such a long time and feels like punishment for me. I’d tried to visualize the tumor hanging in there, dried up. This would be so ideal compared to what I’d be facing.

Finally, bathroom break and then into the room with the big, doughnut shaped, scan machine. At least, they’re not closed in any more, like those narrow coffin-ones they had, even just 2 years ago. Both arms go over the head and are strapped down. Then, mid section is strapped in. (I asked, if this was a straight jacket? Was I in the right place. ha.)

Then, the scan began. Of course, right away, my nose itched. Can’t scratch. Have to lie perfectly still. Then, my eye itched. I’ve tried very hard to ignore all those suddenly, itching body parts. It seemed like a long, long time. Finally the movement to get out of the scan. The nice radiologist, who has done my last 3 scans, assured me that he would give me extra discs, so I would not be anywhere without them. Of course, he can’t tell me what he saw.

My friends were outside waiting and after I received the discs we left. It’s a good place to go and I was not stressed at all. I know, it’s because it’s not so huge and impersonal like Denver University. It’s also because I know these people and they know me.

My doc had finally called Monday eve. He appologized as he was at the hospital all week. He told me all my decisions were really good ones, and ‘right on’ and to involve Professor, as well. He also told me, he would call me at once, today, when he received P.E.T result.

So. Pilgrims. Within a few hours or tomorrow, I should know where to go. Denver or Wuerzburg. My son has agreed to come with me, no matter where I go. My daughter, who has family and can’t leave, is close with support, love and keeping the home front.

( I am selling some ‘stuff’ to finance at least the ticket.) I try not to think about this huge obstacle of money.

 

I had a feeling….

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After I had some time to rest and think, I became pro-active once more. Gloria from medical records at my local Dr’s called me, to assure me that she did, indeed, send the records. I, in turn assured her that I knew it was not her fault. Since it was a holiday, no one was at the office and I need to wait for my dr. to call. I’m still waiting. She worked on having records transferred on Tuesday as well. (I will bake her a cake.)

Meanwhile: I had send an e-mail to Professor, Dr. Koebe in Wuerzburg. I’ve described what had happend and asked for his advice, as I was really worried how I would get rid of this last cancer tumor.

With efficient speed there was a reply as I checked my e-mail, first thing, yesterday morning. My heart beat a bit faster wondering whether he would say, ‘so sorry but I can’t help you. You live too far away and it’s not my jurisdiction and I wish you well’. Something like that. But, what I saw instead was his reply to their incomptence and failure to communicate. How sorry he was that I had to drive so far for practically nothing.

He offered to look at my scans and surgical records, at the slides from lung surgery, etc.  He wrote, to hold off on expensive P.E.T ($8000.00) until he could view all of my stuff. Then, he wrote, ‘Marion and I are always here for you.’ This simple, caring sentence made me cry. ( Marion is Executive Secretary and a warm, caring woman who has also written uplifting and cheering notes. I was so relieved that there was someone, looking out for me.

I also received a very nice comment/e-mail from a woman, who, as it turned out lives here, in Montrose. She has video’s of alternate treatments which she offered. She is convinced that traditional medicine helped to kill her son. After a few e-mails back and forth, I am invited to her home and we’ll look at this info together. I offered to bring Apple Strudel. Through this blog, I have met the nicest people.

Since Dr. D. (Denver University) had made the remark that ‘it may now be too late to remove tumor through surgery’, I started to research that very subject. (I can’t sit home scared and chew fingernails.) Why did she say this? Because she was cranky that I did not listen to her 20 mos ago? Really small of her. I have the right to look for the best, ost gentle treatment for my immune system. I have done very well until last October, when things started to move and I took immediate action, although it was ‘conventional’ treatment option because I was scared.

I’ve found CRYOABLATION. This treatment was first used in Bejing, China, about 9 years ago. It’s a process that uses extreme cold (cryo) to remove tissue (ablation) as salvage therapy when there is no other way to get to a tumor. It is also minimally invasive. (I’ve heard that one before). It’s injected at the tumor site then substance is released which freezes the tumor and it shrivels up and is ‘dead’. It only costs $26,000.00 plus air fare. Down went my excitement. But, further research showed that they also use this at Dana Faber, Harvard cancer center. My one shot to get into Harvard? 🙂 I will check this out. ‘Just in case’.

I’m also thinking of sending my records to #2 Dr. in Grand Junction. Dr. Giggles had told me that she was Nr. 2 and that Dr. D. was #1. But, just like Avon, maybe Nr.2 tries harder.

Meanwhile, everyone is on hold. My son, my daughter, my friends- me. Not knowing what to do, how to do it or where?

If Professor in Germany could remove it, do I go there?  Would my son come with me? (note to self: ask son.) I could but have to pay myself and who knows how much that would be? Where could I go after surgery for convalescing? It would be so lovely, if I had their insurance and could go to one of those marvelous Wellness Centers. Maybe in the Black Forest? Upper Bavaria? Of course, if it works out that I can stay near home with loving support that would be most ideal.

Out from Under Myself

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January 14.  I write that to keep track.  I’ve been sick for almost exactly two weeks, and in a sense I feel like I’ve missed 2012.  I’m in the city now, that singular city, Manhattan. Standing before my MacBook Air at a tall, chairless table in Le Pain Quotidien, the kind of table meant to encourage executives to quaff their coffee and tourists to eat their croissant and then to get the hell out, I begin, suddenly, at long last, to write . . .

I was so happy to get into the city again, after over two weeks away.  If I didn’t get a visual of John Travolta walking the streets to the sound of “Stayin’ Alive”, that’s about how I felt.  Sometimes I can really feel the heels of my shoes hit the sidewalk, and at about 40th Street and 7th Avenue I was having one of those moments.  When I realized my gloves were missing and turned to see my bus heading down 7th I was just starting to listen, on my iPhone, to the guitars of Jet’s blistering “Are You Gonna Be My Girl?”  What are the odds that, just when I need to sprint after a bus, on comes a soundtrack song from the Ski Dance Drive mix?

I leapt into the street, outran a taxi, and ran down the bus.  Whew!  That the gloves weren’t there (I’d left them on the first bus) hardly dampened my enthusiasm.

Afterward, I posted a photo on Facebook, of a different bus, which sparked general outrage that I would stop to take a picture of my prey before running it down.  One person suggested the gloves must have been lined with rabbit fur, but the suggestion is patently ridiculous.  They were actually lined with down harvested from a hundred virgins’ inner thighs.

As I continued my walk to the New York Public Library, I reached into my change pocket and without looking gave the contents to a sad-looking seated man who wasn’t even begging.  Outside the library I would later set up a recurring donation to Somali refugees.

And I walked east on 40th Street and soaked up the energy of the city.

Why didn’t I do this more often over the last two weeks?  Was I thatsick?

Bryant Park Grill, with the New York Public Library behind it

You might wonder – well, you probably aren’t wondering, but lately I have been so self-absorbed I can readily imagine you thinking about me almost as much as I do – you might wonder, I was saying, if I, a coach, made New Year’s resolutions this year.  In most prior years I’d have said no.  This year, I have been putting together ideas, so I have a sort of plan, but it’s not done.  It can’t be done until I figure out what the purpose of 2012 is, other than to scrawl on the wall another tally mark of years gone by.

My resolutions, that is, like me, are a work in serious progress.  Whither Cameron?  There are no yellow arrows here.  “Snap back to reality, oh, there goes gravity,” sings Eminem as I write this.  Exactly.  Back from a camino, or path, with clear markings on it, I am still on this latest quest, the kind of quest outlined in the hero’s journey of myth and cinema.

When I left Bend in August, my plan, which I’d arrived at after visiting several cities last summer, was to move to the winner, San Francisco, sometime after I got back.  That “sometime,” I suppose, holds the rub.  In August I had no idea when my house would sell, but there I was, on an October 14 morning in Galicia, three days from the end of the Camino, executing the closing documents on my house and signing most of my considerable down payment into the recessiosphere.  My wonderful Bend real estate agent, Kelly Neuman, hired movers to pack up my things and put them in storage somewhere in Bend.

At this point in telling my story, the language I overhear myself using with people is revealing:

I sold my house out from under myself.

I find it incredibly useful to watch thoughts, and to deconstruct them like a committee comprised of a literary critic, a psychoanalyst, a lawyer, and a writer (Freud was arguably all of these, the lawyer courtesy of his late 1800s Viennese Judaism).  The metaphor I used – out from under myself — told me I believed, or felt as if, I had knocked the foundations of my life out from under myself, the way you might kick away a ladder you’re standing on.

When I got back to New York on October 22, I wasn’t ready to go back to Oregon on the October 25 flight I’d scheduled.  I felt drained to contemplate it.  Besides, what would I do there?  My life, including my BMW, was in storage.  The Land “World’s Most Expensive Ski Accessory” Rover I listed for sale on Craigslist.  And if I would ever be ready to move to San Francisco, I knew it was not anytime soon.

After all the metaphorical running, running, of the past year-and-a-half, after the literal walk through Spain and jaunt through Portugal, I was, at last, without anything in particular to do.  Oh, the coaching continued, but it was the next mission, the next purposeful and deliberate search for meaning, that was not clear.  And as I tell clients, clarity is confidence, and confidence clarity.  They are really two ways of describing the same phenomenon; you’ll never have one without the other.

In hindsight, it was probably unreasonable to expect that I would attain that clarity and confidence so quickly.  Right.  So, I’ll get back from the trip and I’ll be totally done with the past and completely clear about the future and life will just sort of proceed from there.  There are measurable steps in life’s major transitions, and I was still, on all the evidence, engaged in some form of rest, recovery, recuperation, rejuvenation, perhaps even a subtle, low-grade form of mourning. Whatever it was, I was not my usually hyper-efficient, hard-charging self.

I tried not to resist this, because resisting reality always hurts.  I should be different.  I should be other than what I am.  Even though any sentence that begins with “I” and continues with “should” is almost always untrue on arrival, I “knew” I should be writing.  The following captured thought, repeated incessantly day and night, is how I knew:

I should be writing.

. . . multiplied, like horseflies and gnats and sometimes a mallet, by several thousand.

But what to write?  The camino blog felt over for me.  In title, intent, and practice, it had been a blog about Mom and the Camino and cancer:  I hesitated to make it a blog about me.  But even that was probably academic, because I didn’t know even what I might want to share with the world, or at least with the blog’s hundred-plus readers.  I can see why all the gurus write their books from the perspective of having already reached their grail, after the fact, rather than showing us the dirty confusing embarrassing spectacle of themselves floundering about, flapping about like a fish on shore and in search of oxygen.  Eckhart Tolle wrote his books after his enlightenment, and they’re fine, important books, but how do you relate to a Zen master?

Before the Camino, I had thought about keeping a blog on my journey of separation and divorce in real-time, to illustrate most pungently how a fairly normal person gets through, and to differentiate any related book from all those that show gurus dispensing wisdom in hindsight.  It seemed to me that people don’t benefit from seeing or reading someone tell of their journey once it’s over as much as they would from witnessing the journey itself.  But the Anatomy of a Divorce blog also was not to be.

I also toyed for a while with launching a blog about one of the few things I was , apparently, motivated to do while in New York, which was trying to meet women.  But that idea too has languished, for reasons that need not detain us here.

Happily, for a while in May I had felt like working on “The Novel,” by which I mean the first in a trilogy I conceived of over seven years ago.  I had worked on it peripatetically for about five years, but drifted away from it in 2009, as I spent my time being a senior executive in a start-up, being married, helping my wife run her business, and researching and co-writing a book for several publishers.  I had a brief fling with The Novel during my two weeks in Israel, in May, felt great about it – but arrived back in Bend to reality.  I also lost most of what I had written, after my new hard drive crashed.  This was discouraging, but a drop in the bucket of everything else going on at the time.

And so the writing proceeds very slowly, though it is mostly about the Camino project, which I am tentatively calling Mom and Me, along with some subtitle, perhaps relating to divorce and other cancers.  Could I finish it before the next camino season, say, by May, and get it in Kindle format so pilgrims could take it with them on the Camino?  Could I get enough word-of-mouth and other buzz to sell more than a few copies? We shall see…

In early December, I decided to go to Bend to tie up many of the loose ends that had been grating on me.  But that trip would turn out to be completely different from what I imagined.

 

Friday the 13th

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Laurel, Carrie and I, left January 10th a little late but still in good time to get to Denver. Only had one pit stop in Silverthorn but boy was it frigid! Icy wind blowing and I was worried about the rest of the way, over snow packed passes, icy patches and ever more urgent warning for Trucks to stop and chain up.

Finally made it and stopped at the Marriott right across the Children’s Hospital and next, University of Denver Hospital. Huge buildings and a whole campus with medical facility for each body part.

We checked in and the room was at a ‘patient discount’. Offered Hot Tub, pool weight room and breakfast. The girls took off to check it all out but I had stayed behind, just to rest and get my thoughts in order. Later, we asked at the front desk, where they would recommend that we go for dinner. She mentioned a name, that I already forgot and the shuttle took us over there. At first, I thought it was a double wide with christmas lights still strung up, by the door.

It was an older, ‘established’ Western theme place. I noticed a large, gilded framed painting on the wall as we waited to be seated. It depicted a white cow, sitting up, short horns with a bibb around its neck and long, pink tongue lolling in anticipation of having a ‘good steak’??

I said to the girls, ‘I have this suspicion that they do not serve anything Vegan nor Vegetarian, here.’  They laughed and agreed. We observed the waitress as she went to another table and pronounced that this was a ‘verbal menu’. Rattled off the choices but not the prices. Well, with our turn, I did order Prime rib, baked potato, salad. Recklessly, I even ordered a Margarita but after 2 sips had enough guilt feelings to pass it to Laurel. Carrie and I shared one order of Prime Rib and she opted for her favorite Spaghetti (they serve it with Prime rib?)

Same waitress came to the table with this huge 3 foot peppermill to sprinkle on the salad but in retrospect, this cutesy idea did nothing to excuse the tough meat (and the mediocre spaghetti.)

My one fling before the long ordeal next day and that’s what I got. As we waited for the shuttle, people came to the foyer and looked at the pictures of past rodeo Queens and prize bulls. A whole row of this one, big black bull. Some guy remarked how the owners got quite a long run with this bull. I said, I think, we had him tonight’. The girls just doubled over with laughter, especially after some other patrons asked if our meat was tough?

I said, we should’ve called Gail and ask her where to go. Beds were great and so I had a good night. Woke up at my usual, early time and tried to be very quiet. Fumbled with the coffee maker, in the dark and then re-searched Dr. D. online. It stated that she has 27 years experience, Board certified and has, a generous 5 star rating.

Visiting the Surgeon and Oncologist

I was getting antsy and got ready to go down for breakfast. The girls just opened their eyes at that point. I went down and had some of the Institution scrambled eggs, a gray sausage patty but then felt really guilty and exchanged it for oatmeal. Promptly at 8:00 A.M. the shuttle took us over to the Cancer building. Huge. First appointment wit Dr. Lisa C. Intergrative Medicine.  Her nurse came to take Vitals and remarked at my high blood pressure (168/95) I assured her, that this was only due to the surroundings and that I had very nice, normal numbers. Then, Doctor came and we went to Consultation room. (Girls came with me.) I thought, that this was akin to Alternate but no, that’s not so. Very nice doctor though. She recommended a ND. (Naturopathic Doctor)- Oncologist, in Denver for me to see but the subsequent events made this not possible. She was thrilled that I was already a a good diet, had all my thought process in order, seemed cheerful (not depressed) definitely not a couch potatoe and upon hearing of our camino adventure, exclaimed what an awesome thing to do. She kept saying, that this ND would absolutely ‘love me’ and what an inspiration I was. My blood pressure went down 30 points. She listened to my medical history and then gave me lots helpful material. i.e. Dieticians, Pharmacy, Supplemental advice and assured me, that all of this was free. Part of their program. She’s also a great advocat for Acupuncture.

Then, it was time to see Dr. D. We all went there and, after seeing this big CANCER CENTER sign, I could feel my blood pressure again. Luckily, not quite as high. All that talking helped. More vitals, weight, height. More forms to fill out. Back to Waiting area. I could see Carrie getting pale. Even a little green around the gills. I told her, she would not have to stay. This was not a nice place to spend some hours. But, she insisted on  staying and even going into the room, once more, to listen to all this history, again.

They went out as I was getting ready for exam. There I sat, in the gown, in this bare room, dangling my feet and wishing I was miles away.  Then, Dr. D. came in and greeted me formally and briskly. After examination, she asked her resident for P.E.T scan disc and OP slides from lung surgery. She responded in the negative, as it was not send from Montrose.

She shook her head and was upset and muttered, that ‘heads would roll’. But, she also told me, that now she had doubts, whether this tumor could be removed surgically. WHAT??

Well, it may be too big, she said and since she could not look at it, she had no idea how to proceed. They (Montrose) would need to get her this information, we also need another P.E.T scan, as the one I’ve had in October was too long ago. She said, it was really a shame that I did not have better info.  Denver would now set up a P.E.T appointment, for middle of the week so I would have time and would have to do all these other tests and maybe, pre-operative, if possible. Coming on a Thursday was not a good idea.

My head spun as I tried to take all of that in. I also felt extremely guilty, stupid and ‘wrong’ to have wanted to try to help myself, in a different manner. Like, this is what you get when you go against medical advice. Good one, Dr. D. More to deal with on my full plate.

I was really shaken at that point. I felt the tumor like a monkey on my back, or more so, in my back. This was fast becoming a nightmare. I had psyched myself up, finally, to have surgery and chemo and now, we don’t even know what to do????

Now, I have to wait, again until all these appointments are in place and i’s are dotted and t’s are crossed. I think, I need something to keep me calm. I need to call some of the people, who offered their guest room, in Denver, so I can stay and get those things done. I may need someone here, to help me do all this. I think, this may be more important than having someone here at chemo.  Heck, I don’t even know what’s up.

I felt very much alone, coming home this early morning. Some animal, probably a Racoon? came dashing across the road and I could’ve clipped it. Not sure. At least there  was no thump, or, worse, thump-thump. But it was enought to start me crying all the way home. The dim headlights being swallowed up by the dark road and dark sky. Right now. I am out of ideas, cheery, little remarks, etc.

I am just scared.

Well, here I go…

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After some bloody, scary days last week I’d found out I was detoxing too much and my colon was ‘squeaky’ clean. Stopped doing that and things went away. Still had to go to my appointment and since I was there, I had another CA 125 (ovarian cancer blood test).

I was really, really hoping it had settled downward. But, yesterday’s result was such that I have to hasten to have the tumor removed. In only one months it climbed another 9 points.

Everything is lined up for the trip and I have a feeling that, maybe I should take some more things with me, which I would need, in preparation to stay. I think, Dr. D. may schedule surgery fairly soon. I am working very hard to do a Brain change for these very different treatments than I had envisioned for myself, for so long and stay positive.

When I saw my Doc, I was telling him about meeting with Dr. Giggles and that we’re not a good fit and how insensitive, rude and condescending he was, inspite his Wall-Diplomas, or because of them.

I was also telling him of the compassionate, kind Professor in Germany, whom I had only seen twice. He must’ve heard something as he told me, that I was in the best shape to have this surgery now.   We talked about surgery and I jokingly said that I hoped there would be someone there to hold my colon while she went all the way back in there, he seriously replied,  oh yes. There will be a resident doing that.’  Wow. That’s a picture I could’ve done without. He walked with me to the Front desk and gave me medical copies to take to Denver and then said, You look very nice and healthy’. I replied ‘ in Europe they call this the blooming life’. So ironic and sad that my numbers have gone up when I feel (and look) so well. No swollen lymphnodes. No pain, which is good but realistically, this will change. I hope they have good drugs.

When Doc called to give me the result, he ended by saying again, that I am in very good shape and he was very optimistic about the outcome. I suppose, now that ‘ve raised him  for 10 years, he’s starting to ‘get it’.  He has become a little more compassionate.

I will drive to Grand Junction on Tuesday so we can leave early for our 5+ hr drive over two mountain passes and hope the weather will keep being as good as it is now. Carrie wanted to come along and I said, of course she can, she’s my little soldier.

Marriott Hotel is close to University and offers a discount for patients. Also, free shuttle to Hospital and anywhere within 5 miles, to shop or restaurants. I don’t think I have time nor money to shop.

If I have to stay, Bonnie and Jayne will come to help pull me through and wait until I’m done. Got to have someone on the other side of OP cheering me on .

I will try to inform everyone, once I consult with both doctors. Wish me well. Say a little prayer.