Missing Her Already

Mom enjoying the beauty in Ouray about a month ago

Mom enjoys the beauty in Ouray from her new wheelchair, jus a month ago

Adam arrived on Tuesday night. It’s good news:  he sleeps irregularly, so he’s often up in the middle of the night — just like Mom. He makes her coffee and breakfast and keeps her company before I’m even up.

On Wednesday morning there is an email from Julio, one of our companions on the Camino de Santiago. He must have read the blog post in the email he is responding to, but he cannot bring himself to mention it. He writes:

Inge , you look nice in the pic, i think last time i saw you, you were looking with less weight …
You still my heroine, my amazon, always struggling to survive and always nice smile. Olé …

She takes Ativan, otherwise known as Lorazepam. The label says it’s for anxiety, but the main benefit is to prevent nausea. The downside? It makes her very sleepy. She is usually sleeping, and when she is awake she is nearly still asleep. Her speech is slower, her cognition slower, her laugh also slowed-down. She is no longer alert. She makes a few jokes, but she isn’t talking about food and cooking, not watching TV, not making much conversation – even the kind that used to annoy me. Our shopping together, even with her in an electric cart, has stopped.

I judge myself for thoughts of missing my mother: am I being sentimental? Maudlin? But the thoughts continue: I miss my mom. She’s still here, but I miss her.

Mom groans and stirs on the couch.

“What is it?” I ask.

“I need something for my lung,” she says, reaching a hand around her right flank.

“It hurts?”

She nods.

Later, she begins hiccuping again. She has done this for a few months now.

“Something you ate?” Adam asks, tenderly.

“No,” she says.

No, I think, something that’s eating her.

And then she sleeps, and sleeps, head back, mouth partially open. Her face has lost its fat, and her skin hangs in some places and is taut in others.

My heart is breaking. My mother is still alive, and yet my heart is already breaking.

In the evening I heat up some drunken noodles, but before eating anything I stop in the doorway of her bedroom and watch her sleep. Her head is back, her mouth open. She reminds me of Oma, at the end. I go into her room and see her eyes open slightly. “Do you want the light off?” I ask. She nods or murmurs and I turn off the light. I bend down and kiss her on the head and hug her and put my head and face against hers. She says something I can’t hear. I tell her goodnight and she repeats herself so I can make it out: she wants me to lie in the bed for a while.

I go around the bed and crawl in. I had wanted to do something like this, but she was usually on her couch when she was awake. Now it doesn’t seem to make any difference if she is sleeping. She turns on her side and I lie next to her with my arm draped lightly over her side. My face is pressed up against the cloth of her pajamas at the neck and her hair. Every now and then, our breathing follows the same rhythm. I smell the scent of her hair and pajamas. She is so frail. My eyes leak water. I feel tears from my right eye drip across the bridge of my nose, down the other side, and around the left side of my mouth. I feel them wet her short, grey hair. I lie there, thinking of stopping time. Of making this moment go on forever.

Will my mother be here in a week?

After perhaps 20 minutes, maybe 30, I am hungry and want to return to my now-cold drunken noodles. I begin to extricate myself but she turns and puts her right arm across my chest and around the right side of my head. The fingers of my right hand clasp her upper arm. “You my sonny boy?” she murmurs. “My sonny boy.”

“Always,” I say, in a fierce whisper.

I try to be present, try to soak it up. Will I remember this? Let me build a memory. I feel her breathing. I feel her hand, lightly clasping mine on her stomach. I see the light coming through her open door from the living room. I can’t believe I am even here. I am so sad, so afraid.

I love her so very much.

Starting the Camino de Santiago, September 2011

Mom and I starting the Camino de Santiago, September 2011, with Don Julio Redondo of Bilbao, left

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom and Julio

Messages to My Mother

Listening to all the letters and Facebook posts we’ve been reading to her, my mother has had a

Mom, early September 2014

Mom, left, and sister Christa, early September 2014

hard time believing how people really see her.  She seems truly bewildered that she inspires people so much with her signature combination of passion and gratitude. With her passion for cooking and teaching kids to cook, she’s inspired an extraordinary proportion of her pupils to go into the culinary business.  She inspired many people with her walk on the Camino de Santiago, and with the blog she wrote of her journey with cancer before, during, and after the Camino.  On Facebook, and especially in the Teal Warriors group of women with ovarian cancer and their caregivers, she is known as an eternally positive, encouraging presence, and readers are clearly inspired by her perspective, like her gratitude for nature’s beauty even in the midst of life’s great challenges.

Here’s what I’m talking about.  Herewith, a letter from Grace, whom I met in Washington, D.C. several years ago, and, below that, a number of Facebook posts from my mother’s Teal Warriors, a wonderful Facebook group consisting of women with ovarian cancer and their caregivers:

Dear Inge,

We have never met, and yet, you have influenced my life immensely. I write these words to you today with so much love and gratitude.

Many years ago, I decided that someday I would walk the Camino de Santiago.

Last year, when the funds were (finally) there for me and the trip became a real possibility, I began my research and planning.

Your blog, Camino not Chemo, appeared on my Google search.

I read the entire story in one evening. I remember so clearly curling up on the couch, laptop there with me, ignoring my phone as it rang, literally blocking out the world… reading long into the night. “Just one more entry…and then I’ll go to sleep…”

But I couldn’t stop reading. Hours went by. Quickly!

Reading all about your journey, the physical one and the spiritual one, was a godsend to me. I know the words were sometimes yours, sometimes Cameron’s, but what shined through always was your strength. Your infallible spirit. Your determination. Your bravery. You are, quite frankly, one of the strongest women I “know”.

I was truly overcome with emotion when I saw the pictures of you there, outside the Cathedral in Santiago. A beautiful, joyful face. Healthy in body and soul.

And then, upon your return to America, I continued to follow your journey…

This battle that you have faced with such dignity and courage.

Many months later, when I began my own pilgrimage across Spain, you were with me. I thought of you as I followed your footsteps across the Pyrenees, when I knelt at the base of the Cruz de Ferro, when I swam in the lake at Molinaseca, and when I embraced my friends when we arrived in Santiago. I thought of you as I continued on to Fisterra, when I jumped in the ocean there at the “end of the world”; for me a pagan baptism, of sorts.

And I think of you now. Everyday! With so much love and gratitude.

Thank you Inge. Thank you for sharing your journey. Thank you for sharing your life. Thank you for educating so many of us, your faithful readers, on healthy living.

Your story has inspired me. In many ways, you have changed my life. My journey would not have been the same without your words. And I will think of you as I continue to walk my life’s journey.

I am eternally grateful.

Your friend,

Grace Santarelli

The notes below are a sampling from the comments from members of Mom’s Facebook group, Teal Warriors:

‪Denise:  Please tell Inge I’m thinking of her from the UK. Her posts, her pictures helped me through my toughest times with my late ‘Little Mum’.

‪Pam: There are no words to describe my feelings and I am sure those of many others. ‪Inge Cheatham‬ – you are an amazing warrior. As Kerie said, you have set a very high bar. I too was drawn in by the beautiful pictures and inspiring comments you posted each day. I miss them but mainly because they reflect you. Even through all of what I just read about, you were posting encouraging positive comments when you could. I am pleased that you are receiving such wonderful support. We will have tea together in a beautiful flower garden someday… Praying for a miracle. Also comfort, peace, and some joy in each day. I love you my friend!

‪Susan:  Please Let dear ‪Inge Cheatham‬ how very much she is loved by us all. We are keeping you all in our thoughts and prayers. She has warmed all of our hearts at one time or another.. God Bless

‪Linda: ‬ This flower is for you Inge… Protea – the flower of strength. Love and Prayers to you sweet Inge. Thinking of you now and always.

‪Andrea:  All the beautiful words and photos you have given us Inge here is one for you [with a photo]

Colleen:  Thank-you for letting us know ,your Mom has helped so many of us please let her know we are sending her positive healing thoughts.

‪Betty: ‬ Inge, my dear teal warrior sister, never have I known a more compassionate and loving lady that understands the sad part of our illnesses yet always finds joy in everyday. I love you, Inge. Please find peace and comfort in your coming days. God bless you, my special friend.‪

Valerie:  Inge….you are an inspiration to a lot of us,,,you are very courageous and beautiful. Prayers to you my dear.

Victoria: Cameron! Thank you very much for updating us. I am thinking about your Mom every day, and she is in my prayers. Even when i am not feeling good and can not write my post, i am looking if there an update from Inge. She is Amasing. Sending my prayers, energy and healing hugs to her. God bless your family!

Karen:  When I check Facebook, I usually start by looking for Inge’s post. The beautiful pictures and encouraging words are a great start to my day. Even when she is going through a rough time, she remains optimistic and informing. I have been going through a rough patch and had not checked for Inge so this news is hitting hard. Please let her know what an inspiration she is to us and what pleasure she gives us. You, Cameron, are such a loving and caring son. I’m sorry for all you’ve gone through but you have given so much to your mom and her pride in you comes through in all her posts. My heart is breaking but thank you for keeping us informed.

‪Ruth:  Please tell Inge all the messages she is getting, she has helped so many of us. She inspired me to get on with life. Cancer does not define us, it’s a part of us. She has helped so many of us to stop and see the beauty in nature around us. She is the rock on our teal warriors. (((((((((((((((Biggest hug ever))))))))))))

Susanna:  Thank you for letting us know Cameron , I think about you Inge every day , you are my backbone , you giving all of us hope and strength , and a lot of useful advice, a kick in the butt sometimes, you made us cry, and you made us laugh, you are an absolute angel. Lots of hugs prayers for you and your loved ones.

Sharon:  Prayers for you ‪Inge Cheatham‬, you have given so many of your teal sisters inspiration to keep going. Love and hugs to you.

Beth:‬ ‪Inge Cheatham‬ has been a beacon to me. She is the light of love and caring. Always striving for just a bit more of life’s beauty.

Want to see what they all mean?  Then enjoy this!

True History of the Camino de Santiago

Mom’s new favorite book, featuring Mom and Julio

Das war die Grenze

I am on the phone, trying to listen to a coaching client. This is harder than you might think, because I can also hear, through the spare bedroom door, the sounds of my mother retching.  My Mom’s journey through 2014 has not been what we expected.  

This is how many of her days begin, but to truly understand the beginning of her days, we need to start the night before. She goes to bed at nine o’clock. Just before she retires, she or a friend pulls a spoon out of the freezer and, from the refrigerator, both an orange wedge and a container of applesauce. The spoon is glazed with flour, so that the cannabis oil placed there comes off easily once frozen. She dips the spoon in the applesauce and collects some on the tip. She bites into her orange wedge with one hand, lifts the spoon to her mouth with the other, closes her eyes, grimaces, and swallows the little lump of cannabis oil and the applesauce. She washes away the bitter taste with the rest of the orange wedge. She may take an Ibuprofen — “half an ibuprofen,” she tells people — but for months she took no medication other than cannabis and half an ibuprofen.

Mom, early 2014

Mom, early 2014

More recently, she takes with her to bed the small pump that, with the press of a button, delivers painkillers to the chest port that was installed for last year’s failed chemotherapies. The button works only every eight minutes, though my mother tries to push it only a handful of times a day. I remember when, soon after she got it, she unplugged it for just a little while, and the pain returned. “I guess I’m tied to this thing now,” she said, somewhat mournfully. She is very aware of all the things that she can no longer do, or do alone.

At times that list has included eating, one of her greatest pleasures, or cooking, which for her may rate even higher for the joy it gives to other people. She had to stop visiting me in Telluride many months ago; the altitude was too much, and she could no longer enjoy the spectacle of me singing karaoke. Walking became difficult next, and when it became too much so we got her a wheelchair. Her young friends Annika and Gregory, to whom my mother is practically a grandmother, burst into tears when they saw it.

Annika, right, at a party for Mom

Annika, right, at a party for Mom

On her bedside table you would find a glass pipe into which she will stuff marijuana from a local medical marijuana store, some shatter hash made by some friends, which she will smoke with the marijuana to help her sleep, a bottle of smartwater, her cannabis oil vaporizer pen, and a long bean bag made for her by her friend Madeline. It requires 3 minutes in the microwave and is a balm to the pain in her midsection.

Until recently, at about midnight, perhaps one o’clock, she would wake up in crippling pain. “It feels like there is an animal inside me that’s trying to chew its way out,” she has said.  She would take some more of her cannabis oil (which, as she will tell you, is really more of a paste), and perhaps, though she usually tried not to, some morphine. (Painkillers constipate, which can lead to pain worse than they solve). Some nights the pain was so bad she’d take three hot baths. Somehow the hot water helped where even drugs did not. On a few occasions she called out to me, or even came to my door to wake me up. But there are a few times I will never forget: waking up in the middle of the night to the sound of my mother sobbing, vomiting, as she collapses, exhausted, with her arms over the commode.

Two weeks ago, I was in Telluride when our friend Bonnie texted me to say that she was taking Mom to the ER in Montrose. I jumped in my car and met them at the hospital about eighty minutes later. They put her on pain and nausea medication, but a few hours later she was discharged. At around eight o’clock that night, the pain in her abdomen and kidneys was too much. She was moaning, gasping, with pain. The pain, she had once told me, was worse than childbirth, not quite as bad as kidney stones, but longer-lasting. I would watch her as she sat on the couch, hugging herself, rocking to and fro, tears in her eyes, and I would try to imagine that.  We had to go back to the ER.

We walked out through the back door of her house. I steadied her with one arm and carried her bags and medicine pump in the other hand. Every step or two, she would stop, bent over, sobbing from the pain. Soon I was crying too, quietly, as always, and we stood there together like that, on the flagstone path in the moonlight, and then we trudged on, one step at a time.

There is nothing in life that quite prepares one for this.

From the ER she was admitted to the hospital, where she stayed for three nights. Friends visited. She told one friend, Silke, “Das war die Grenze. Das war die absolut Grenze.” Which means, That was the border, the absolute boundary.  “I couldn’t ever go through that again,” she said to several people afterward. “I’d shoot a dog in that kind of pain.”  She longed for home. But home, when we returned, was a very different place: friendly and helpful hospice nurses were in it now, and Mom was connected to her pain medication pump at all times.

Lately, due to the intravenous medications from hospice, she gets up in the morning less with pain and nausea, and she may sleep without interruption until a luxurious four o’clock. But on one recent morning I was up at nine and found her still in bed, looking drawn and spent. “Are you okay?” I asked. She shook her head, looking forlorn. “Nauseous,” she said. “I’m just trying to get on top of it.” She says this a lot, about pain and nausea: “If I can just get on top of it.” I ask if she wants a joint, she says no, so I draw her a hot bath with Epsom salts. As I retreat to the spare bedroom where I sleep, I can hear her moaning in the tub.

This is how the new day begins. Yesterday she posted on Facebook that she wanted to go for a drive today, to see the colors before they depart. But she doesn’t think she can leave the house. I bring her hot tea and a baguette with butter, and then I get on my coaching call.

After my call we watch her German TV for a while, soaking in the images of the Bavarian Alps on some travel show, oohing and aahing with our desire to be among them. Like in happier times, when we spent many a magical time at her brother Horst’s hotel in the Swiss Alps. Horst, who died unexpectedly only four months ago, from cancer. When the program is over we watch one of the movies I got from a RedBox at City Market the day before, “The Bone Collector,” with Denzel Washington and Angelina Jolie. For lunch we eat a thick soup made by Karla, a darling 83-year-old German friend of my mother’s. Then I go to Starbucks to get in three hours of work.

Her friends visit. Berle, who once texted me, “I love your mother!”, and who for many months brought the fresh goat’s milk that was the only thing my mother could eat. Peggy, who says my mother is like a mother to her (and she like a big sister to me), and whose house I sometimes stay in when Mom’s spare bedroom is full, or I have a friend in town. Karla makes soup and conversation. Silke brings apples and footrubs and a

Silke, center, with my Aunt Christa, left, and cousin Fiona

Silke, center, with my Aunt Christa, left, and cousin Fiona

never-ending smile. Bonnie was with Mom during her first chemotherapy, in 2001.  She comes every Tuesday night. They used to go out to dinner, now they eat in.

Rob comes from across the alley to check on Mom, and to roll the joints that no one else knows how to roll. The neighbors next door mow the lawn. Monika brings kaffee sahne, Epsom salts, and flowers, and fixes Mom’s German TV. Lynn, mother of Annika and Gregory, brings groceries.

Gregory, Mom's little buddy from birth

Gregory, Mom’s little buddy

Lynn also bought my mother a new washing machine, and insisted on giving Mom money for the new Samsung Galaxy phone I recently bought her. Another German named Inge brings books about historical Germany and fresh blueberry scones. Sometimes my sister-in-law, Jannilynn, visits from Grand Junction, bringing her young son, Braxton. Jannilynn has no relation to my mother, but she has really taken Mom to her heart.

Mom hides behind Jannilynn's tresses

Mom hides behind Jannilynn’s tresses

On a weekday afternoon, I will take several more coaching calls in the spare room, pacing the cramped space as I talk. And then from about seven to nine we will watch another movie. Tonight, we watch two-thirds of “Gandhi,” which I last saw in the early 1980s, when it came out.

Some nights I draw her bath, or fetch her oil, or lie next to her on her bed and rub her back or hold her as she tries not to vomit, but holds the blue vomit bag in front of her mouth, just in case.

My mother still expresses gratitude. For a call, a visit, a meal, a strawberry, a tree turning yellow and orange.

The writer and doctor Atul Gawande, in his thoughtful new book, Being Mortal: Medicine and What Matters in the End, writes, “The brain gives us two ways to evaluate experiences like suffering—how we apprehend such experiences in the moment and how we look at them afterward. People seem to have two different selves—an experiencing self who endures every moment equally and a remembering self who, as the Nobel Prize–winning researcher Daniel Kahneman has shown, gives almost all the weight of judgment afterward to just two points in time: the worst moment of an ordeal and the last moment of it. The remembering self and the experiencing self can come to radically different opinions about the same experience—so which one should we listen to?”

Those who love my mother believe their job is to make her most recent memories as full of love and warmth as possible. I am eternally grateful for all of them.


My niece, Brianna, visited for two weeks in June, along with her mother, Candace

My niece, Brianna, visited for two weeks in June, along with her mother, Candace

2014-07-10 09.58.06

Mom and I accompany my nephew Dylan to court for a traffic violation



Hot days and cool cooking

The continued heat makes everything harder to do. There is a certain inertia, when you step outside and a hot slap assaults your face. No rain since May. I am going walking early in the morning while it’s cooler.

Last Tuesday, was chemo day and a friend drove me to Grand Junction, so Cameron can have some days ‘off’. I was so sure, that the scheduling nurse had made a mistake, I called her over to ask what happened to July 9th? I didn’t want to get it all confused and somehow miss having a chemo. She and another nurse checked and it was my ‘chemo brain’ that had lost an entire visit there.

While I was waiting in the lobby of the cancer center to sign in, a woman spoke to me. ‘Excuse me,’ she said, ‘where did you get that shirt?’ At first, I was bit puzzled because this is an old shirt, white with two colorful parrots painted onto the right front. ‘Oh, my niece painted them a long time ago. She’s very talented’, I said smiling. 

She really liked that shirt. A man was sitting across from her and a younger one opposite. She asked me, what I was doing there? Waiting on someone? I told her, no, I’m waiting on chemo. She said, you are too cheerful to have chemo. Ohhh, I said, ‘not always.’ But, I can decide, each time with which degree of fear, dislike, etc. I approach this treatment. I then told her of the lifestyle changes I had made. I told them about walking the Camino de Santiago. I really had their attention then. She told me, that her husband also was just diagnosed with colon cancer.They were there to find out all the hard stuff. Stage, treatment, possible surgery, etc. They looked like they been hit. Which, of course they were.

Before too long, they were called to their oncologist’s appointment. I quickly tore a bank deposit slip (had my adress, phone number on it) and told them, that if I could help in any way, to call.

Meanwhile, it was the 4th of July celebration, which I was invited, first by the neighbors and then later that afternoon, at a friend’s house. Ate hot dogs, a burger, beans, and 6 salad leaves (because of the Vitamin K thing.) Then, they talked me into a slice of home made apple pie. At first, I was steadfast and said, ‘no thanks, I think I quit while I’m ahead.’ Well, that didn’t last long when I heard all these happy sighs. So, I did eat a slice… with whipped cream and a dollop of ice cream. My Goodness. Nausea hit like a well aimed arrow and I ran for the bathroom. Luckily, I had my hash oil pen and immmediately took some deep puffs. After a few, I coud feel the nausea receding. Just like someone threw a soft blanket over it. A little shaky but otherwise restored, I went back to the kitchen. I tell you for sure… Pure Magic’. I was upset with myself for eating like that. I had not had a hot dog in over three years. I had not eaten as much in long time.’ If you dance, you got to pay the Piper’.

Yesteray, I was invited to a concert, given by a very talented Bob Milner. Plays some ‘mean’ piano tunes. From Blues, to rag time to Boogie-Woogie. Had us snap fingers and tap toes. Nice break in an otherwise boring Sunday.

Came home and sat back with a good movie, when the phone rang it was the son of the people I’d met at the cancer center. He told me, that theye were now ready to change lifestyle and would I consider coming to Grand Junction and show them how to do this. Of course, I said, I would be delighted. (Of course, they will pay me.) He told me, that his parents (as well as he) really liked my positive outlook inspite of the C world. His father could really benefit to be around me, especially since this was my 2nd time around, dancing with the ’emperor of all maladies’. I told him that having cancer was not automatically a death sentence. It is a definite change in ones life but we have a choice how to react.

We decided on Saturday. Sure hope my car will not be expensive to fix as I first, drive to Telluride to visit and bring (frozen) dinners to Cameron and hopefully go up into the mountains and see those awesome wild flowers. ( I really want to see Cameron singing Karaoke.)

I am thrilled to be able to ‘cook’ and teach about healthier lifestyle, so at least bump up the Immune system to have a fighting chance.

I am still struggling on finding something to eat which does not throw off the ‘Cumadin’ blood thinning med. Can’t eat too many greens. Can’t eat too much fruit which contains K. I never even thought about ‘K’ and now it absolutely controls my life.

I am excited to design menus for my new friends. I love having a ‘purpose’. And, just in time, my leg feels much better to where I can stand, walk for more than 30 min. Life is good.



Dr. Very Nice

After the many days waiting for this appointment, it finally came. A very windy day but we made to Grand Junction. Cameron accompanied me for some ‘hand-holding’ if need be and to take notes.

Meanwhile, I had bought a book, Embrace, Release, Heal,’ written by a Grand Junction woman, who had horrible cancer with 3 recurrences. This is an amazing journey and after I read what she did and her decision to do Alternate and why, I felt totally re-invigorated. She spoke to me. She had the same fears, doubts and terrors….. and then, she had success and despite that her doctors/oncologist and other people tried to dissuade her, ridiculed her, she stayed the course. I applaud her. She made it. She’s well, for the time being.

After filling out some more paperwork we sat and waited. Wasn’t too long before I was called and went to the examination room.  The nurse took my vitals and my bloodpressure was up a bit but nothing like in Denver (or Montrose Cancer Center.) I attribute this to two things. First, Cameron was with me and second, I have been at this Pavilion so many times, I should own a corner of it. The staff is very nice and ‘upstairs,’ know me by name. Dr. M. came in, introduced herself and we all shook hands. She told us that Dr. D. had not send certain scans (??) and they had called and asked for them.

To explain what I am dealing with, she drew a rough sketch of the body ( appologizing for lack of artistry) with the aorta running through. In the pelvic region she drew a cluster of lymph nodes next to it. Very neatly, tightly attached to the aorta. These I had not been aware of. You mean there’s more??

She told us, why surgery would not work. Even if they could get to the 5.5 cm  ‘problem node’ and extract a portion, we’d still have to deal with the other ones and they simply cannot be excised out.  ‘Cancer is a chronic illness, she informed us, ‘Similar to Diabetes.’

Even though she was aware that I did not like chemo, yet it was the only available option. Cyberknife would not work due to that cluster and one other area in pelvis. Chemo had worked well for me before, she said. She had me describe the after effects. She told me, that we could do the schedule differently. Instead of throwing the whole works at me in one sitting, we could do a lower dose over one week’s time and have 3 weeks off. At the same time, add anti-nausea meds into the IV, so I could or would tolerate it better. She told me of another patient, who’s abit older than I, who has tolerated this and functions quite well. Radiation would not work either, due to where it all was and the intestines would be damaged greatly.

She asked me how I ended up in Montrose. I’d told her, she didn’t have that much time. She laughed and said, take short route. I gave her the highlights. I felt so comfortable with this nice, kind spoken Doctor, that I’d told her what I was taking and what I was doing for myself. She did not even blink. I went a bit further and added that I take Tumeric/Curcumin, etc. No ridicule, no exclamation of ‘this is nothing but quackery’. Oh, I like her, I thought. She even gave me the name of a Naturopathic Doctor, in Ridgway, whom I can consult about the Vitamin C, Iscador and other vials that I had brought from Germany and had been sitting in my fridge ever since.

She asked, if anyone had ever suggested genetic testing? No, I said, never even came to mind.  Well, since I have quite a line-up of family members with a cancer history on both sides, it would be feasible to have one. For my children and grandchildren. To find out if there’s a genetic reason. Medicare may not pay for this pricey test but we’ll go ahead and do this. I’ve had some ‘Angel’ friends visit me and others who send a check to help out with these expenses and bills that keep coming. Their love and kindness had me in tears.

I also told her about this new, piercing pain on the left side, in my abdomen. That one has me disturbed enough to mention it. I am taking my Ibuprofen 600 mg but sometimes, that’s not even touching it. I have stronger stuff but hesitate to take this as it will cause constipation and I feel so ‘rummy’ and fuzzy. I don’t like ‘drugs’

She said, that I could get just as many years out of this chemo.. and if ‘it’ came back, well we’d treat it again although the time span of remission in between would be closer together. Hey, I thought, ‘ Thank you, God’, I’ll take 10 years, to be with my family, to travel a little, to see the beauty of this world.’ I’ve made peace with my cancer and I will do things to help get better as this is another wake up call (unless it’s GENETIC) to change things in my life. No matter what its origin, now that it is here, again, I’ll try to deal with it as best and as gracious as I can.

Dr. M. suggested that we do a series of blood work, including genetic testing and a new CT scan as well as another CA 125.  (Ovarian cancer marker).

When we were leaving, I took her hand and thanked her for being so kind, gave her a spontaneous hug and promptly burst into tears. I wasn’t used to kindess. It’s unsettling.

I felt a huge weight lifting. I finally had a plan. We were doing things. I was really relieved not to be cut open and have my intestines rearranged and to deal with the pain and accompanying discomfort.

I’m not sure, whether we’ll travel to Huntsman now. We have not heard from them and what could they tell me differently? I think, I’ll just stop resisiting and wrap my mind around this and work on being accepting. Camino NOT chemo. Well, family and friends (and myself) I sure tried. You’d have to say that. I gave it a good run. And, of course, I will seek alternate advice until all these appointments. I still have a little time until then. Hope does spring eternal.

Yesterday, the phone rang and, would you believe it was Dr. M’s office (already!) to schedule these bloodtests for May 2nd. Until then, I have time to work on me with a last ditch effort, to detox, take stuff, do acupuncture, cleansing and whatever else I can do. Maybe, just maybe… it’ll disappear.

I was telling Cameron, that this thought occured to me: When I was on the camino and walked up to the cross,  offering  that the tumor be taken and then when this did not happen, I failed to see that I’d already gotten my miracle. Although the tumor was not ‘gone’, it has stopped growing since October. I mean, I have 3 PET and one CT to proof this. The markers have gone down. I am grateful.

I want to go away for a few days. Have a vacation from cancer and all this intense talk and research and accomapying fear. I am calm now and feel peaceful. Another gift.

One day, like the next…

Sometimes, I can’t remember what day it is. They all seem to blend in to pretty much the sameness. Make breakfast, then again for Cameron. Clean a little, run errands. Shop for groceries (often). Bring them home, then prep, chop cook or not. Make salads.

Cameron is busy with his work and then calling, researching, answering calls, talking to Medical Professionals.

Meanwhile, I’ve acquired an odd pain which has me puzzled and Doc doesn’t know either. Since I’ve just had so many (and expensive) scans, I’ll not have another. He called in a new prescription which is a little stronger than Ibuprofen.

Last Saturday, we went to a friend’s house to photograph all the items I am selling to help defray cost of this cancer and treatment. We have posted the pictures on Facebook and the Facebook caminonotchemo page.

Still researching prices. Will put some on eBay. Ask!

Photos: 145

Friends have been overwhelmingly generous. With Organic veggie presents and money, discreetly placed in envelopes, which allows me to ‘save face’.

So now, we wait. For the appointment on March 26th, in Grand Junction with Oncologist. Then, hopefully, we hear from Jon Huntsman Clinic, in Salt Lake City, soon.

The great thing about going there, is, that we have friends who have offered their home and we can stay while I am being examined, questioned and hopefully have a good solution.

This is getting really old. Not knowing. Not doing, and now having pain. Trying very hard to be patient, to be up-beat but once in awhile, like in the darkest hour of the night, I was caught in a weeping storm. I have nightmares.


Constantly Questioning What We Think We Know

Over the last week, Mom and I convinced ourselves of certain things about our interaction

Mom Checks Email and Facebook in Bilbao

with Dr. Chutzpah, and I summarized that thinking in the post Paging Dr. Chutzpah.  However, the doctor, who I’ll now call Dr. Denver, phoned us back today and answered several of my questions.  In the process, I realized that some of her earlier explanations had been merely unclear or confusing, and some of the conclusions Mom and I had drawn needed to be revised.

I toyed with the idea of leaving the original up to dramatize how information gets distorted by our thinking, and our thinking by our emotions, but I felt the disadvantages of being incorrect and unfair to an unnamed person trumped the advantages (the interest of generations of historians).  So the post as written yesterday has been amended, and I’ll add the new information below.

First, we had not been made adequately aware that Dr. Denver’s decisions had come on the heels of consultations with a team of about a dozen experts in different fields in what I gather is a routine multi-disciplinary meeting to discuss difficult patient cases.  I view the results of that kind of discussion more favorably.  While the groupthink phenomenon is always a danger, and I have no way of knowing if other doctors at the meeting stood to profit from any decision for chemotherapy, the presence of numerous people from different fields does present less opportunity for a decision motivated even unconsciously by profit.

Second, while Mom and I both understood the doctor’s comments of last week as meaning that Mom’s mucinous tumor was as unlikely to respond to chemotherapy as most mucinous cancer cells, Dr. Denver appeared (now I must qualify everything, even though I took contemporaneous notes) to say that, because the tumor is a recurrence of her original ovarian cancer, it would likely respond as well to chemotherapy as that first cancer did.

Below are my notes from the recent conversation, expanded from memory and edited for clarity.

What is the primary cancer? 

I noted that a pathologist said a few months ago that the spot on her lung – removed last summer before the Camino — was lung cancer.  And that another doctor had deemed that nonsense, saying it had to be ovarian cancer.  Dr. Denver said the pathologist had noted in his report that the spot “looked different from her original cancer,” and added, “if they say it’s lung cancer, they’re definitive.”  The pathologists at her own hospital, in any event, had concurred that the lung spot was a separate cancer, lung cancer.

So what kind of cancer is in this largest tumor?  Ovarian?

“I have no doubt,” Dr. Denver said, emphatically.  The lung lesion had been quite small, while the cancerous lymph node in question is not in a place where lung cancer spreads to, but it is where ovarian spreads to.

Pelvic Spots

Proton therapy is based on high-tech particle acceleration, which, like pelvic spots, reminds me of the Sun

I said that we had contacted a proton therapy center in New Jersey last week and were told today that their radiation oncologist saw other areas of concern in the pelvis and sigmoid colon.  He said this meant the cancer was metastatic, or had spread, proton therapy would not be appropriate.  (However, I could not get, or did not understand, an explanation for why removal would not be better than nothing).

There is something in the pelvis, Dr. Denver said, but that’s “relatively easy to resect,” which is Medical Latin for to remove.

Are these stable unchanged nodules something of concern?

Dr. Denver said something about Mom’s “trend over the years” that I did not capture, and went on to say that Mom’s cancer was behaving more in “a low-grade, indolent fashion.  If this was a high-grade cancer, she likely would have died of it by now.  In that sense she’s fortunate.  But where it’s decided to cause trouble is in a spot that’s impossible to get out without significant risk of just bleeding to death.”

Those other two sites, the doctor said, are another reason Mom “should get systemic therapy” to see if it “shrinks down.”  (I now see ambiguity in that “it”  — to see if what shrinks down?  The cancer generally, or the difficult lymph node?  Once again, I see a real benefit in a super-clear written explanation by the doctors.)

Oh – by “systemic” she means chemotherapy.

How did you know the lymph cancer was mucinous?  

She didn’t have the reports in front of her (note to doc:  buy a tablet), she said, but said mucinous was the histology of her ovarian cancer.  “These tumors aren’t known for being chemo-responsive tumors,” she said.  I believe she said the histology doesn’t change.

So, I said, are you saying that because Mom’s cancer, 11 years ago, was mucinous, and the histology doesn’t change, that this cancer must also be mucinous?  I believe she said yes, but she was on to a discussion that to my lay mind seemed unrelated, and hard to follow.

She said that chemo 11 years ago should have been done after Mom had had “everything visible cut out?”  I asked what she meant by “everything visible” (after all, Mom’s heart and other organs were “visible,” so surely she meant something more specific).  By “everything,” did she mean everything that looked problematic? That was my understanding.  I said that the original surgeon had spotted the lymph, but had left it there because he deemed it inoperable.  This is Mom’s memory, and she believes it’s in her diary, but one of her local doctors said the spotting of the lymph wasn’t in the surgical notes).

Dr. Denver pointed out that she couldn’t know what the doctor may have been referring to.

Should We Get Surgery to Remove as Much as Possible?

If we left some of the tumor behind, Dr. Denver said, “we’re not accomplishing much.  It will be all scarred in, it will grow back, and any attempt to resect will be even harder.”  As I did many times on the call, I restated this to her in different words to ensure I had understood it.  She went on:  “When you operate and disturb the natural tissue plain, you create more scarring.  If you have to go back in there again, it’s worse.”

“So you’re saying,” I said, “that if you go right up to the border of where you can cut safely, then when you are done that border will become scar tissue that’s harder to operate on in the future?  And that you’ll have scar tissue immediately adjacent to the aortic veins?”

“That’s right,” she said.

I asked about something called Insulin Potentiation Therapy, a form of chemo that uses a far smaller quantity of chemotherapeutic chemicals.  It’s also called “soft chemo”.

Insulin Potentiation Therapy

During my research, I had liked the idea of IPT (as Mom did), as it’s also called, but was not impressed with the dearth of science.  The idea:

It consists of giving a patient a dose of insulin followed by a tiny dose of chemotherapy.

Cancer cells have 15 times more insulin receptors than normal cells. The insulin dose helps to target chemotherapy into cancer cells because they have so many more insulin receptors. So small doses of chemotherapy can be used that cause little harm to normal cells. With Stage 1 or 2 cancer, IPT is, I read, about 80% successful, mixed results for more serious cancers.

I contacted a company called EuroMed and a doctor there got back to me this morning.  Ovarian cancer is very sensitive to IPT, he said – it’s the most sensitive of all cancers to chemo, but difficult to keep in remission.  It can get aggressive and resistant to treatment.  Almost every patient on IPT will go into remission, he said.  They frequently take patients in Stage IV, already sent to hospice care by their oncologists, who are now surviving five to seven years later.

The most important element for a patient’s prognosis is the clinical picture, he said.  He said it was very good that Mom felt well.  If she feels well with no symptoms, he said, she’ll do better with IPT.  “The way out [of cancer] is through a strong immune system, and that’s the key difference between IPT,” which aims to preserve the immune system, and conventional chemotherapy, which many say destroys it.

After Mom went into remission, he said, she would have her blood drawn monthly and be brought back for another “zap” in the case of “a flare”.  She’d be given unspecified oral supplements along the way.

Science, Alternative Therapies, and Follow-the-Money

What about scientific studies?  I’d been unable to find any original studies on the web, and only scant reference to any studies.  I heard from the EuroMed doctor a variation of the argument I see a lot these days when people discuss alternative therapies.  The arguments sometimes carry a conspiracy flavor that I find distasteful even if I can imagine them, in this case, being true.  They go like this:

IPT [or insert other potential cure] is opposed by big pharmaceutical companies (who are now people for purposes of lobbying, per the Supreme Court’s decision in Citizens United).  There is no money to be made in therapies that aren’t conducive to being patented.  If something can’t be patented (e.g., a plant essence), it can’t be sold at a high profit margin because others can sell it too, at low prices.  In the case of IPT, it’s not an entirely different therapy, but the small amount of chemicals used means little profit for pharmaceutical companies.

So big pharma, which allegedly (I have not confirmed this myself) funds the research hospitals that do all the studies, will not fund studies to prove the efficacy of competing, unprotectable technologies.  Doing studies properly costs a lot of money.  IPT [or other potential cure] providers lack the funding to do such studies themselves, and get no cooperation from university hospitals.  And doctors like the one from EuroMed, who do IPT, are oriented toward clinical work, not research, in their limited time.

In any event, the doctor asked for her biopsy report; her recent bloodwork (her CA-125 is currently a very low 52); and a recent scan.

Dr. Denver on IPT and Chemotherapy

I had just gotten the words “Insulin Potentiation Therapy” out of my mouth when Dr. Denver said, “Chemotherapy.  Anything else is just investigational.  She can do that, but it’s way outside the norm for what we would do for a recurrence of this cancer.”

When would IPT be appropriate? I asked.

“I don’t know what it is,” she said.  “It’s not something that would be used for ovarian recurrence.”

It’s clearly an alternative therapy, I allowed.  That she hadn’t even heard of it proved that much.  It was her job, of course, to focus on therapies with some research behind them.

“You’ve got to assume she will respond to chemo,” the doctor said.  She also said, of Mom, “She’s got multi-focal disease and is not a candidate for surgery”:  the systemic assault of chemotherapy was the solution to such a case.


What about doing the surgery in part to get out some of the tumor for a biopsy?

Surgery for the purpose of getting a tissue sample would be too invasive, she said.

But would you test a sample if you had one?

Sure, she said, for a chemotherapy-sensitivity assay.  There are a variety of them in use; some are good and some are not.  The University of Colorado Medical Center uses one called CARIS.

But you need a core biopsy, she said.  A certain amount of tissue.  And she was doubtful you could do that safely.  She concluded:  “I wouldn’t operate on her because it’s too much risk and there’s not an adequately identifiable benefit.”  This is the kind of language I look for.  It suggests she’s weighing both costs and benefits, and comparing them to one another.

She asked an oncologist in Grand Junction to contact us.  We’re going to set up an appointment with the Huntsman Cancer Institute at the University of Utah.

Paging Dr. Chutzpah

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..

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…

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.