Bye, New York- Hello, Denver

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

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’.

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..

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

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.

December, 2011 | Camino Not Chemo!

Bye, New York- Hello, Denver

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

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’.

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..

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

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.