My Cancer Journey

The Journey Continued...
January 28, 2006 - Six Treatments Left and Doing Well
April 21, 2006 - Coming Back to Myself
May 14, 2007 - Mother's Day & Limbo is not a lovely state
May 16, 2007 - It has been such an anxious time.
June 4, 2007 - Anger and Perplexity
June 17 2007 - Pre-op Update
July 10 2007 - Lifted, then Dropped. But Joy is Back
January 27, 2008 - I finally learn to develop systems and follow them
June 12, 2008 - Stage IV?

June 8, 2005

Dear Friends,

If you have accessed this page, you probably know that I have closed my office in order to focus on my treatment of a breast cancer recurrence. When I am able to do bodywork again, I will be seeing clients at Forest Wellness and Massage on Burnbridge Road (....), and I plan to be available for groups again once I am able, most likely at an earlier time. I have chosen to obtain a second opinion, which is recommended for all serious medical conditions, at The Cancer Treatment Centers of America in Zion, Illinois.

I have chosen this facility as it uses an Integrative Medicine approach to patient care which most of you know I value highly. Their marketing talks of treating the whole person and of including the expertise of naturopaths into the treatment plan, as well as mind-body approaches. Given my own reactions to many chemicals in the environment, finding ways to minimize the impact of chemotherapy on my body could be very important in my quality of life both during my treatment and after. The chance of having cognitive problems down the line is a major concern for me as the literature indicates that chemotherapy can cause permanent deficits for a significant number of women. As perfumes and cleaners have affected my brain function - my mood and mental clarity, I feel especially at risk.

I am typing this journal on day two of my evaluation here, but I would like to back up before sharing my experience with you and give you some background. I was diagnosed with Stage II breast cancer in April of 2003. I found this lump on my own and immediately knew that it was malignant and in my lymph nodes. I had not felt this lump when I had last done self-breast exam six weeks prior. It was not immediately visible on the mammogram, and it was on my insistence that something was wrong that an ultrasound (US) of my breast was done. (Message: trust your feelings!) The US readily showed the malignancy, and the wheels of motion at Virginia Baptist’s Breast Health Center were put in motion. A support person was almost immediately brought to be with me and my husband during the biopsy, and she followed my care from that point on, even assisting me in finding a surgeon whose personality was best matched to mine. She did well. I chose a mastectomy as I felt that it would make radiation unnecessary. Clearly, weighing the risks against the benefits made doing radiation of “borderline” benefit. I also declined the hormone modulation that my oncologist suggested, again fearing toxic effects on my liver.

My fear of toxicity, and a lack of adequate treatment as a result, may have led me to have this recurrence. I will never know. I took a risk. I do believe, however, that things seem to happen, as they should. My intuition told me I would have this recurrence, but I would be OK. In any event, I feel stronger and more able to withstand the toxicity of the treatment this time.

I have felt this recurrence within me since November 2004, but despite the careful follow up that was done by my oncologist and the Breast Health Center when I kept returning to voice my concern, there were just no real signs of it until May 2005. (Another reason to respect your inner knowing.)

June 9

It has been a grueling week, closing my office, making the rounds to pick up records from multiple places, moving books to First Christian church, where I hope to participate in the formation of a health ministry in the future, packing for a probable 7 weeks, making arrangements for our cats and dog, having surgery to remove 5 malignant lymph nodes from behind my left clavicle and running intravenous vitamin C at home. (I had done this after Christmas when I could feel that my lymph system was not right, but the CT scan did not show them yet. It seemed to help them to reduce the fatigue I was feeling as well as the rough feel of my superficial lymph nodes. And I wanted to buy time.)

It has also been a wonderful week. I did all that I did with the help of friends. I have never felt so loved and cared for. And I couldn’t have done it alone.

June 10

Another grueling day, packing the car. We hoped to make it to Charleston, W.VA, but we opted to stop in Lewisburg and enjoy the lovely afternoon in that quaint town. We always fantasize about living there....We met a lovely woman in the health food center who dealt with her cancer in part by not relating to it as an enemy, but rather as a messenger. I can relate to that. As I worked to close my office, the grief of losing that very precious space has been lightened by the thoughts of a new beginning. When I can slow down, I am going to sit in silence and prayer and ask for that new beginning to be revealed to me.

June 11

We made it to Columbus, Ohio, where tomorrow we will attend my son Alex’s graduation from Ohio State University as an Industrial Systems Engineer. Both he and his girlfriend, Amie will walk together. We attended a party her family put together for the two of them. What an emotional time! I am so proud of him, of them. Will I live to see their children, their wedding? Despite my confidence, the fears are there...But I have to stay steady. This is a time to celebrate his accomplishment.

June 12

5800 people received their diplomas today at the stadium. OSU has it down! It went smoothly with only a few sprinkles. My oldest son was there, and I broke down again. As he put his arms around me, I was proud of the way he could do that. He has grown into a most caring and solid man. I pulled it together for our celebration together. It was good to spend time with my sons and grandsons who got maximum mileage out of the fake poop and spiders in plastic ice cubes I brought them! (Among other things, of course)

June 13

We met with my Ohio physician, who had administered the low dose Insulin Potentiated Therapy I chose last time instead of conventional chemo. I am always fascinated by all that he knows. He is having his most success with that therapy with neoadjuvant chemo - that which is given prior to surgery to decrease the tumor size. The James Cancer Center at OSU will refer patients for that occasionally. He agrees with my choice to have chemo and radiation if advised. The most interesting thing to me is research into cadmium as a pseudo estrogen. Cadmium is a pollutant, which comes from fossil fuels and enters our bodies where it seems to have the same stimulatory effect on cancer cells that estrogen has. It can be detected by the collection of urine over 24 hrs following the intravenous administration of Calcium EDTA (used in chelation therapy). I did have that done years ago when I worked in a medical office that did chelation therapy, and I did have cadmium at that time. The records that this physician is keeping show that every one of his patients with breast cancer has elevated levels of Cadmium, and none of the non-cancer patients do. After my treatment, I will look into it. Having chelation to eliminate the cadmium could be a good thing.

June 14

Our first day at the Cancer Treatment Center of America. Finally! We are staying at the Illinois Beach Resort, right on Lake Michigan. This is one of three places CTCA has reduced rates in. They would have flown us here for the evaluation, but will reimburse mileage since we drove. Their shuttle buses and limousine, which picks up patients and visiting family members, can be seen around this small town and at the front door. The shuttles transport patients from the hotels and from their 40 bed guest house which is available for about $23/night to radiation patients who are here for weeks.

I am confused as we walk toward the hospital building. There is another name as well, Midwestern Regional Hospital. I find out later that the 95-bed hospital serves the community as well, a commitment they made when they purchased the facility. The lobby houses a large fish tank with exotic fish and a solarium. The tree of life logo is reflected in a gold colored tree with leaves inscribed with survivors’ names, in a large painting, and a large live tree with white lights in the solarium. And there are beautiful orchids everywhere!

We report into the 4th floor, where the new patient clinic waiting room is located. The paperwork is the usual repetitive stuff of hospitals, but levity is maintained by the cheerful Julie, who asks, “Do you hate me yet?” and otherwise works to make us feel at home. Muffins, tea, juices, water and coffees are available.

There are three couples this morning scheduled for their second opinions. We talk with one and find that the wife’s diagnosis was made just 3 days ago, a mass on her pancreas shown during tests on her kidney. She is in pain, on a level of “8” on our range of 0-10 for pain. The nurse massage therapist in me steps up and gives her my appointment which precedes mine, and I do some Therapeutic Touch, which she gratefully reports as having reduced her pain to a “5”. An hour later, her husband tells me that she was able to doze off after they did her initial assessment, and while waiting for the Fentanyl lollipop that brought a smile to her face. I was impressed with how quickly they gave it to her.

By the time we meet the oncologist, we have nametags and wristbands that will give me free meals throughout my stay and allow the same for Charlie up to $4.00/meal. (The food is good, with as many organic offerings as possible.)

Now it is my turn. Nancy, the nurse of 20+ years here reviews the information she has gleaned from my records with me for accuracy and gets my weight, etc. The oncologist soon follows. There are more tests he would like, a CT scan of my abdomen and pelvis and a bone scan as some time has gone by since my last ones. And of course, more blood work. (Ouch!) I show him what feels like a new node to me in my neck and he confirms he can palpate it with a size of about half a centimeter (there are 2.5 cm’s in an inch) and finds another I have not felt. He states that at this point he agrees with my staging and feels that getting chemo started is important in order to treat what is a systemic disease at this point - circulating throughout my body, waiting to lodge somewhere (my words). They have studied the results of doing what they call fractionated doses, giving the total dose that is currently accepted as ideal over a 3-4 day period. We would start with 3 months of infusions given over a few days in the hospital for observation, after which I will return home. Then they’ll then fly me back at monthly intervals for on going treatment with blood tests being done at home to monitor my blood counts. Before we establish the treatment plan for sure, however, he wants to have the results of the tests, which are scheduled the next day and finishing on Wednesday. I will meet with him on Thursday afternoon for results.

June 15

Aside from an annoying, but not life threatening, reaction to the Iodine for the and prep, things are going well. (Think of Goldie Hawn in the “First Wives Club”! Remember her big lips? That’s me, swollen and red!)

My testing was completed today and Charlie and I met the treatment team in a series of mostly one-to-one interviews. It worked like this: we sat in a small consultation room and received a series of persons from the team. Each person explained his or her role in my care and gave me a business card with his or her name and photo on it. This is an example of the thought and care that has been put into this new system, recently initiated: A large notebook that is well organized with an easy to use directory and labeled subject dividers provided. Everything that is explained is also in writing for later reference. But here is an example of the attention to detail I immediately saw: the first two pages are clear plastic pocket sheets to put the business cards in. At the very top are my in-patient and outpatient managers’ cards. (What a gift to me: a person of piles and things stuck in pockets!!)

Throughout the interviews, the availability of the “guest services” staff to assist in finding the right person to meet a need is stressed. The longest interviews were with a nutritionist and a naturopath; each took detailed notes. The last two meetings were in a group format. We learned of the services of the physical therapy department and received detailed information regarding hand washing and the prevention of disease transmission. (I ascertained that this was a Joint Commission for Hospital Accreditation requirement.) It was a very full day, but a good one. We meet with the oncologist to review my results tomorrow afternoon.

June 16

Assessment results: The good news is that no further sites of cancer growth have been identified. The bad news is the 5 malignant nodes that were removed were only a quarter of the total number hanging about my SCM (neck muscle) on the L side. So my first Lynchburg opinion offered the option of considering treating my disease as a chronic disease with radiation and Arimedex (hormone modulator) as a treatment plan. This, I believe, was being offered due to the problem I face with chemical sensitivities. The tumor board at Virginia Baptist said radiation and chemo. The oncologists here say we can’t wait to do chemo as is usually the case, with radiation first, and that doing both somewhat together as they are doing with my brother in law, is too toxic for me; that it is a systemic disease that must be treated systemically now.

So, I made the decision to get on with fractionated chemotherapy treatment next week. I will get a port (an under the skin device through which the chemo can be infused.) The plan is to do 3 days a month for at least six months if I tolerate it. The naturopath is helping with managing side effects, and I plan to have some hypnosis here as well as acupuncture. I have suggested they use the motto, “State of the Art, Care from the Heart.” I continue to be very impressed with every request or need is met so quickly.

June 24

My week of therapy has gone well, and has been very busy. My anxiety went very high when I found that I would have a different oncologist than the first (the oncologist in the new patient clinic.) Actually, it was after meeting the new doctor that my anxiety went up, as somehow we just did not click. His way of reassuring me was to cut off my concerns and tell me everything would be OK. Well, dear friends, if you know me, you know that’s a battle cry for me. I always want to know what, where, when, and how come! There also seemed to be a disconnect between his approach and the integrative approach I came all this way to receive. So I wrestled with that one through my second encounter and decided that I would ask to work with another physician. My feeling was, if my doctor made my anxiety go up, I should work with someone else. And my experience here, of seeing that the team was working very hard to reduce my anxiety - the fears of treatment, the terror of cancer, the newness of place - all of it, has made me comfortable in asking for a change. And the response has been what I hoped for. (Lesson: trust yourself. Ask for what you need. Insist on it if necessary!) It is possible for a healthcare system to honor your needs. In this system, my needs have been repeatedly anticipated.

So! Thus far, I have received my first three chemotherapy treatments and have been scheduled for my next round. The travel scheduler is waiting for my call to book my tickets for my return. I have attended classes on cancer, and on chemo side effects. I have attended two of the weekly focus groups called, “Through Your Eyes” in which guest service representatives and administrators meet with patients to get feedback and to address concerns. I am told that this is how the green book and the new system was developed - from patient feedback. I have had massage and acupuncture, and met with the psychoneuroimmunology dept. twice. (That means I spent time with someone who speaks my language and is a very talented counselor.) I have met with the naturopath three times and received verbal instructions and written documentation my plan for supplementation. I have met with the nutritionist, who measured my muscle mass for a baseline, twice. And I laughed my way through a class on Laughter Therapy during my last infusion. In between, I found some time, on my off days, to give a few chair massages in ICU and do one craniosacral session on a patient’s wife. She said today her headaches have not returned.

Oh! and I must not forget the pastor that showed up right before my port insertion surgery and took all my anxiety away. What a precious man! And, I forgot the image class where I walked away with a glamour wig - you just won’t know me! (Did I forget to mention I am now bald? I chose to choose my own timing on hair loss.)

We will head home in the morning, stopping in Michigan to see family. thanks for your interest.

Blessings your way. And be well until I see you.

June 26

We are in Farmingtron Hills today, a suburb of Detroit. The drive here was miserable due to my nausea and inability to sit up for any length of time. That could have been the Compazine, which I took for the nausea. But today is a much better day. I began with a wonderful soak in the garden tub here in the hotel. The jets beat the knots out! I then did some sit-ups and push-ups. CTCA stressed the need to maintain activity, muscle mass and protein levels.

Charlie participated in his friend's sermon, and I made it almost all the way through the service before the nausea set in. This time I used the Ativan, and it worked great. I ate heuvos rancheros with gusto! We had a too brief visit with Charlie's daughter, who is becoming quite a lovely woman. Tomorrow we will head for Ohio to see my son Alex's new apartment. Getting home by Wednesday is the plan. I need to set up blood draws to follow my blood cell counts (which could drop because of the chemo) and clotting time (which, if prolonged, could cause bleeding.)

I am enjoying my baldness. What a sense of freedom. Later this year, I can appreciate its return as part of the new beginning this chapter of my life represents.

June 29 2005 There’s no place like home...

It was along drive home through Ohio, PA and Maryland. I felt like one of my kids as we drove the last hour so, “Are we there yet?” ran through my mind repeatedly! We listened to NPR and music much of the way, and toward the end I read to Charlie from books that his friend Hal had given me. All three promise to be very meaningful to me, but I would like to telll you about this one first. It is called “morning B.R.E.W., A Divine Power Drink for Your Soul”, and it is written by Kirk Byron Jones,DMin.,PhD.

The book starts with a recounting of his 4 yr old son’s charming morning routine of announcing, “I wake up!” DrJones then goes on to discuss the nature of our first physiological awakening as being followed by a “second awakening” which he defines as “our response to the gift and grace of another day’s journey....that our decision to simply notice more can make a new world of an old world.” I have not read past the first chapter yet, but already I can feel a fresh and inspirational desire to devote more time to being mindful of what is present for me, of all there is to be grateful for, and for setting my intentions for this day with a real sense of how precious this day truly is.

June 30 2005 - Thoughts on our cancer center...

I saw Dr Oldham, my local oncologist, today. He and his office have very kindly agreed to follow me even though I have chosen to get my treatment elsewhere. Weekly blood tests are needed to follow my blood counts. And it is important to have someone on my team close by for any emergencies. I was touched to learn that Dr Oldham had tried to reach me while I was gone.

Writing about how I feel about the Lynchburg Hematology and Oncology physicians and staff feels important to me in the light of all the praise I have given the Cancer Treatment Centers of America. The first thing I noticed about CTCA is that everyone there treats you as a favored member of a family. (We must acknowledge that there are sometimes members of families that we would rather not spend time with, mustn’t we?) I felt like favored family there. I feel like favored family here as well. The caring I feel from the staff here in Lynchburg, however, is an intimate caring that sometimes can be hard to take. I see worry for me in their eyes at times. I recall saying to a friend once that I felt it would be better to be treated elsewhere because the concern I saw reflected in their eyes contained fear for my survival. And I feared that any lack of confidence could undermine my ability to heal. Wayne Dyer, whom I saw on PBS while in Columbus, talks about healing often being dependent upon persons around a patient having no doubt that the healing would occur. That may be true. But that said, I am not about to judge the quality of another’s caring for me when it is so evidently there. I am just grateful for its presence.

As many of you know, my goal as an integrative health nurse is to be a bridge between conventional and complementary care. And as I consider that we are building a cancer center here, what I would like to see included in its program becomes very personal for me. Thus, sharing my experience is my way of making a contribution to its formation.

We have such a good foundation to build on here within Centra Health and with the staff of Lynchburg Hematology and Oncology which offers exceptional care within accepted professional guidelines. We have efficient and streamlined diagnostic ability, at least in the area of breast health, the only area I can speak of. We have an excellent pastoral care department. We have caring people. What a wonderful place to start! My greatest wish is for openness to adding new approaches, which personalize the care delivery system, and for the provision of holistic measures, which support the body, empower the mind, and create hope in the spirit.

July 3, 2005 - About Fear

Fear is a monster. It lurks, ready to pounce with any inkling of pain. My chest has been hurting since early yesterday evening. I am not sure of its source. It could have been foolish not to go to the ER, but since my pulse was regular, and no activity changed it, so I chose not to. This morning it feels more like my stomach. TUMS helped last night. And Aloe Vera juice this morning soothed what more clearly felt like stomach burning. But the fear of not knowing remains. If this is the start of my body’s response to chemotherapy, I best get busy! Busy with meticulous self-care. And busy with my God connection. Saving my prayer and meditation cannot wait until the Sunday I saved it for this week.

I have been busy with household things since we returned on Tuesday evening - the fleas that greeted us and all of the laundry; running errands and unpacking and beginning to deal with all of my office things left sitting in the downstairs hallway. But I have not yet begun a morning sitting practice beyond a few minutes with my coffee. And I have busily ignored any signals my body has given me, including the tears that flowed when Charlie rubbed my back yesterday morning. It was as if I said, “Good! Now that has been let out. It’s time to get busy with my day.” My body is not allowing me to push past myself this morning, however, and it is Sunday, after all. Time to sit in silence and befriend the fear, giving it the space I deny it and inviting God’s presence to soothe it.

The psychoneuroimmunology (Body/Mind) department at CTCA had a class entitled “Talking to Your Symptoms”. Having had some practice with talking to the many “parts” of me, my anxiety leapt at the opportunity to berate me, in this journaling exercise, for having run off to shave my head willy-nilly without regard for “her”. “You always do this, she said, “you never give me any time to adjust, you just go off and do it!” The exercise involved a dialogue between this neglected part of me. (“I am strong, I can push ahead, and I am in charge!” over-rides her as a rule.) I promised I would spend more time with her. And I will have to before I decide to share these most personal reflections.

But what does fear have to say this morning? She says, “Please don’t abandon me.” Her quiet plea touches me. And I wonder, can I hold this vision of total healing and support of the inherent wellness within me, the place that I feel will grow and take over if I believe in it enough, and still make room for Fear?

July 4, 2005 - Some thoughts on Fear

In reading your journal entry for yesterday, I was struck by your struggle to come to grips with the presence of fear. I don't think that dampens in any way the environment of healing in which you are living. I'm attaching some thoughts that came to me.

Ruth Syre, R.N., B.S.
Congregational Health Ministry Program Coordinator
Department of Pastoral Care
Centra Health

For Ethlyne

Some thoughts on Fear

Fear.
Some see merely a four letter word
Used as profanity
Used as a weapon
Used as a shield.

Fear.
Is it the first emotion we feel
When exiting the womb‰s warmth?
Is it the last emotion we feel
When exiting this life we know?

Fear.
I think it is a woman,
A companion
Perhaps even a touchstone
To remind us of what is real.

Fear.
She does not ask to dominate
Or to take the space
Where hope and love
Must surely live.

Fear.
She asks merely to exist
Quietly, in a corner of your being
Urging you to remember
The fullness of the dimensions of this life.

Received with a sense of a heart filling with the love of friends, and shared with permission. Ethlyne

June 6 - Letter to my Body/Mind Counselor

Good Morning Katherine,

As of 6 pm yesterday, I have my app’ts for next week. I will arrive at O’Hare at 8:45 am on Mon, 7/11, and my first app’t is at 2 pm or so for a blood draw and EKG. Dr Granick follows at 4:30. My chemo starts at 9 am the next day for 3 days. Then I will have Fri am free before returning home.

Scheduling time with you and for acupuncture are my priorities. I thought I would start with you. When I allow myself to be still, which is rare, my grief is huge. It cries out, "My life will never be the same" and, "I will never have the chance to become all that I would like to be." So many of the past few years have been lived in limbo - first, for how changes my husband’s professional moves create for my practice. I have adjusted to that by increasing my web presence and working on the refinement of portable facets - Bringing Wellness to the Workplace materials, my computer and writing abilities for instance, and my use of guided imagery, skills and offerings that can used or offered wherever I am. I am hoping to start the AGID’s guided imagery certification during this treatment year. I have talent there, but no degrees to help in being hired in an integrative center, so I thought the certification could be good.

Now, again, my life is in limbo. The good news is that once I give space to my fear and grief, I can shift into the present and to working on building my skills and abilities. I am getting better and better at that. One thing that facing one’s own mortality does is to make one look at procrastination in a new light. There just ain’t time, baby! Get that (dreaded task) out of the way so the real fun can begin!

Looking forward to seeing you. I do well working on myself, but it gets lonely too. I also know that adding your energy, intention, clarity and experience to my own process will help me. Let me know if and when you will have time next week.

Ethlyne

PS: I feel well enough to see a couple of clients this week in addition to my exercise program of rebounding, weights and ab lounger. The chemo brain fog has been relieved by the Biometic’s product, "Bio-Alert", and I am catching up on bills and organizing my medical records. So far so good! I am hopeful that I can continue this on the weeks prior to my chemo.

July 10 - Introspection gets boring

I have stayed away from journaling for the past few days. I lay sleepless after my last entry, sick of myself and my whining about fear, grief, loss and limbo! “Does anybody really need to hear all this? It is time to get a life!!” So I did. I have joyfully seen three clients, one each day over the past three days. One was a first massage and the opportunity to get to know someone I have recently met. Giving a first massage is very special. I am always filled with admiration for the bravery that taking one‰s clothes off and lying vulnerable on the table implies. And I am touched that that person has chosen me to touch her. So although each session I do is done with a feeling of reverence and care for the quality of connection we are creating, the first massage requires a special attention to creating the template upon which each touching and being touched experience can build upon. My belief is that through being touched and guided to be present with the parts receiving the touch, we can begin to be present with ourselves in ways we haven‰t before. With each “bodywork” experience we increasingly become able to sit in silence with our sensing of what is. And my core belief is that acceptance of what is is the greatest change agent there is. Giving a massage can be like being a tour guide in the land of what is, a land filled with sighs of release of letting go, and perhaps most of all, of learning to receive. I must admit, for me, there is no truer connection than being received, and that as the wounded healer I am, it has been through being received that I have learned to receive myself.

Other joys: I was treated to a home cooked meal and time with good friends and their 10 week old son, whose birth I was privileged to attend. I washed and ironed everything I could find in preparation for being away this coming week for round # 2 of chemo. And I was overjoyed to be able to open the windows and doors, relishing the summer senses - the rustle of trees, the cat birds chastising and buzzing my kitties, sitting on the porch with that, “This is what summer is supposed to be” feel. I leave in the early morning for round #2 of chemo (there will be a minimum of six) to return on Friday.

June 13 - new med and fuzzy brain

I am in my second round of chemo with a new (to me) drug being introduced tomorrow due to the chemo resistance testing showing a strong resistance to the Cytoxin I had gotten last time. So I had two doses of the Adriamycin (I think I have that right, but my brain is goofy from it, and the Decadron in preparation for tomorrow’s Taxotere.) It potentially has heavy-duty side effects, so I am on the Decadron to head them off, despite my personal dislike of steroids. I have been sleepless after 2:30 am for two nights and otherwise hyper. I am not quite focused enough to do a journal entry, but I decided to put a brief update in. Charlie says, “You could try the Ativan...” Duh! and I don’t like drugs! But I may succumb if sleeplessness continues.

My infusion was in by 10:00 am, just in time to lead a group in Centering Prayer during the worship hour which had been cancelled due to Pastor Percy’s mother’s passing. The patients had decided we would meet for our own worship, and we had a good-sized group. Most of us contributed in one way or another, including the lovely piano playing of one of the CTCA board member’s wives, Pat, I believe. They did not know of the cancellation, but joined us. It was lovely to hear Art say “That was wonderful.” after my offering. I later had the opportunity to help the resource librarian with her obvious back discomfort by doing some hands on work in a slow time. These small occasions of being able to contribute hearten me. But I do feel myself crashing as the afternoon progresses. I am looking forward to more acupuncture at 4 pm. Irina is a most lovely Russian born and trained physician who is not MD licensed here, but is as an acupuncturist. I feel fortunate to have her skills and her caring presence.

Thanks for keeping up with me. Prayers between 10 am and 12 noon tomorrow (7/14/05) are requested - and for my trip home, and for my blood counts to hold! My oldest son, Steve, is coming to see I navigate the airport once the limousine drops us off. I am looking forward to our time together and grateful he can take the time out of an incredibly busy schedule.

Catching up: July 14-August 5, 2005

Dear Friends,

Please accept my apology for not keeping up. A few of you have e-mailed me with your concern as to my status given my silence. It was wonderful to know you have been following me. I have written a number of pages over the past few weeks, but the thought of transcribing them is rather daunting at this point, so I will condense my thoughts and experiences as best I can.

June 14, 2005, Round 2, day 3 of chemo at CTCA:

My first round was done as an in-patient. This was my first experience in the outpatient setting, and I found it confusing and rather chaotic in contrast to the well-oiled and heart-warming experience of the evaluation and inpatient experiences. I was looking forward to attending the “Through Your Eyes” weekly session in which administrative and department representatives invite patients to provide feedback and concerns. Both my sister-in-law (whom I may have mentioned is here to be with her husband who is a patient-what a way to have quality family time! And that it has been...), also an ex-hospice nurse, and I felt that if it was difficult for us, that it must be even more so for the general patient. But as it turned out, neither of us was unable to attend, as I wanted to stay close to my IV infusion nurses due to a change in my medication. If there were to be a reaction, I wanted them close by. I was musing on this when unexpectedly, Jerry, the manager of the respiratory therapy department, stopped and introduced himself. He explained that the different department heads took turns making rounds in the infusion center to get feedback from patients about their experiences. He took the time to hear my personal story, of how I came to choose CTCA, with an affect of genuine interest. He then took notes of Nancy and my shared observations. It was very impressive to me, as I already felt that CTCA was very committed and unusual for even having the “Through Your Eyes” so regularly. The effort and interest that Jerry conveyed, the fact that this extra effort was being made, seemed over the top! I later saw a guest services manger who sits in the outpatient waiting room later and she shared that Jerry had given her feedback and what some of the issues they were looking at were. I participated in a time study of patient flow the first day, so it is clear the flow is being looked at. I find it all fascinating. There seems to be a lot of transparency in their efforts. This allows me to appreciate their challenges as well as appreciate the almost universal expression of caring that I see from the staff.

August 3, 2005

I returned to CTCA yesterday, where I immediately felt better than I have in 3 weeks. For two weeks, weakness prevented me from driving, and I was blessed with some volunteer drivers. I am getting high dose Vitamin C IV in between my chemo to help offset the toxicity, and when I got to the infusion center in Lynchburg, I was found to have a temp of 100.7 which triggered a blood count which showed a very low white blood count (0.6 for you nurses). An antibiotic was ordered, but before Charlie could even deliver it to me, I experienced very worrisome chest pain, a high heart rate and some irregular beats, and I called the squad. Long story short, it was the Neulasta, routinely given to offset the predictable low blood count, which was causing the chest pain - as the sternum is a site of that production. I returned home after getting a prescription for pain. All in all, I had 10 days of debilitating weakness and pain, and a few days of some productivity. One day I got a lot done by working for 10-15 minutes, and then resting for 15. It felt wonderful! Another day, feeling better and excited about Charlie’s son’s impending visit, I suggested making a spaghetti dinner for him to Charlie. The light that lit in his eyes spurred me on, to that and clearing out the refrigerator, in preparation for being away for a week, by making pots of soups to eat and freeze. By the time Mark arrived I was done in. I don’t like myself much then. I get pretty irritable. I just can’t seem to get the pacing down. And I hate to see Charlie doing everything. Mark, however, was such a good help during his visit.

I can see from my personal journal that I had a good day on July 25th. The constant bone and stomach pain had lifted, and I was excited about Mark’s visit.

Charlie and I took on a rather ambitious weekend to explore the Pennsylvania Dutch country prior to returning to Roanoke to put me on a flight to Zion. It was a wonderful trip in which we met many lovely people, saw a little of the Gettysburg, and later Harper’s Ferry, which was very interesting. But the day was a big one after which I gratefully sank into the hotel bed (Best Western?), which was comfy and well equipped with both an exer-cycle (not a chance!) and a rubber ducky in the bathroom.

August 5, 2005

Last day of a busy week here! My limo will take me to O’Hare Airport at 1:30 for my 4:25 flight to Roanoke where Charlie will pick me up at 7:30 his time. I have interacted with the case manager regarding the refusal of my insurance to cover the new anti-nausea drug script I took to the pharmacy and found the cost to over $100/pill! I have refills of my naturopathic regimen waiting for me. I will get my Neulasta shot to support a rebounding of any falling White Blood Cells, and hopefully they will have space for me to sit in on Grand Rounds regarding hormone modulation for breast cancer control, which is clearly in my future. It is very difficult for me to embrace Breast Cancer as a chronic disease, for which the hormone modulation is a key treatment. Although I know that constant vigilance and care of my whole person - body, mind, and spirit - must become unwavering way of life for my survival, I still prefer the thought of a my goal being cure, not disease management. It may be splitting hairs, as it is clear that my body has the propensity to allow the cancer growth to spread and grow. To deny that would be foolish, but in my heart of hearts, I wish for the unseen, less knowable forces that are facilitating this recurrence to present themselves for their own healing. I have had some help in this, but my general malaise has interfered with my ability to truly work with my own self-healing. I had two wonderful PNI sessions this week, one a fabulous guided imagery group in which Rashada, who has an incredible gift for bringing her presence into the group. I entered a profound state of relaxation, much like I used to do years ago when I had a regular sitting practice of being present with myself. My body entered into a self-unwinding process -arms, spine and neck, all eager to assist in unwinding all that my connective tissue and energy field had been holding. My thoughts were of both joy for the experience, and regret for my neglect of a practice I know is very supportive of me.

With the peace of the body/mind session within me, I then spent an hour with Katherine Puckett , the director of the PNI program. She is another special presence, offering that sacred ability to be the listener, but also offering her full understanding of my conflict, and of my need not to lose who I am as a healing professional, even while I am receiving care. I have been in conflict with myself as whether to apply for Soc Sec Disability at his time. It is clear that this year, the minimum time required for eligibility, would make that appropriate for me. But I am fearful for what embracing that image of being a disabled person would do for me. I prefer to image myself as a vital, able and contributing as a full, healthy person. But I also I can see as I write this, that the key is to accept my own limitations. That learning to balance my life between self care and care of others in the ways that make my heart and soul flourish, is the key, as it always is for those who work in the healing arts. Clearly helping my body find it’s way to overcoming the influence of the cancer must be key. The never-ending challenge is in how to keep the proper balance while maintaining my sense of who I am.

Treatment results thus far? Not exciting as yet as we had hoped for a complete regression of the still palpable supra-clavicular nodes. We decided to forego the Vit C this time, to not offset which could be a clearing of longer lasting effects of the chemo. Next visit here, I will have a CT scan of the neck followed by 3 chemo days. Where we go from there will depend on the CT, or perhaps a later PET scan.

So folks, there we are for now! Thanks for being with me. I am off to pick up scripts, get neulata, and attend grand rounds.

Blessings to you all! Be well. Take good care of yourselves. Listen within. Take time to honor your needs. Feed your body, mind and sprits with high quality nutrition, breath and movement!

August 9, 2005

The difference between how I feel after the 2nd round of chemo and now is phenomenal! I am not clear what the reason is, but my Decadron (a steroid) was reduced due to my complaint that it tore up my stomach, and we delayed the Neulasta until the day after chemo whereas it had been injected the same day last time. I have had only an inkling of bone pain, which my new homeopathic remedy relieved right away. Looking at everything, it occurs to me there are a number of factors.

I have shared the wonderful PNI experiences already. These came as my inner process was struggling at how little I have been able to help myself feel better. (If anyone has the tools, I do!) Last month, as I lay crying in pain, there just seemed to be no way; yielding to death seemed easier than having to suffer the pain and malaise I was feeling. I hated myself for my willingness to yield rather than face the discomfort, discomfort that paled against that which I have seen others endure! Had I really decided to live a full, productive, joyful life? (which I thought I had after years of anxiety and depression, the emergence of memories of long buried abuse, and the evolution of an ability to have real emotions and accept myself as having them- joy in one hand; angst in the other simultaneously - “holding the tension of the opposites” as Jungian analyst Marion Woodman would say.) This ability to be compassionately present with myself and the conflicts my inner psyche hold has become my measure of true mental health. It came to me through my body, first through body focused awareness taught to me by my therapist, and then through bodywork, beginning with craniosacral therapy. And it has become the work I love as a nurse massage therapist - helping people to be present with whatever is there for them as we sit in an intentionally created sacred space which allows whatever is right for the client to emerge without any preconceived agenda, and in the safety of constant boundary checking on my part. Holding the space, that is all....Most often the releases are, surprisingly, wordless. I have been amazed over the years at the number of clients who say months later, “You helped me so much with my grief.” I had no idea. This feedback came from both a simple relaxation massage as well as from the more practiced techniques and paradigms I now work from. The key seemed to be in any case, just to be present.

So here I am, sitting, at last with some composure, contemplating what is here for me at this moment and how I can best help myself in this healing journey. It is hard to admit, to embrace, that little piece within that is telling me that this is not going to be a walk in the park. But in the face of unchanging lymph nodes, it is impossible to ignore. If I listen more closely, however, there is the sense that I will not be alone in this walk that will not be through the park; that deep in the pit of my stomach, this sense of untold challenges is surrounded by some sort of available cushioning, a cloud, if you will of available energy to bring to the challenges. In the few previous moments I have allowed myself to go within, my search has been for a seed of wholeness which would be the holographic, perhaps, starting point for the restoration of my body, and perhaps my soul. I didn‰t find it then. I am more hopeful now. Sitting in the silence, I am, at long last, after a great absence, permitting myself to be truly present with what is within me and to setting my intention for my full engagement in my healing.

My morning care plan:

• Continue the use of my vibrational healing tools -The Solfeggio Tuning Forks that I began before leaving CTCA, every 2-3 hours. (My clients love them!)
• Soothe my stomach with aloe vera juice and regular eating. Use a small dose of Ativan if needed for the annoying sense of nausea that keeps recurring.
• Begin my aerobic conditioning per CTCA‰s Bodies in Motion program (actually I started yesterday with therabands while on my bed. The 3 loads of laundry, down to the basement and back upstairs were enough aerobics!) Today I got up to my chemo adjusted target heart rate up for 8 minutes while on my mini trampoline, and did 18 “Abd Lounger” repetitions, a good start for someone de-conditioned and with a history of Chronic Fatigue.
• Listen to some inspiration sent by my dear and wise friend, Suzanne, a CD set by Eckhart Tolle, the author of the book, The Power of Now (I really recommend it.) This set is entitled Transforming Suffering. I am looking forward to it.
• Revisit the silence and that place within that contains both the source to guide my healing and the faith to sustain it.

Please pray for my continued ability to sit in silence, to perceive and compassionately accept what is , to hear my guidance and to follow it through.

August 10, 2005 - Tears in the Morning, Tears at Night

I typed January 10 in error just now. Perhaps that means this ordeal will be over by then! A welcome thought. Speaking of little understood phenomena, I would like to share what has influenced my confidence that I will survive this cancer. Before I do so, despite the moments, such as this morning, in which I sobbed for an hour, telling God I was not ready to leave yet, my prayers, and confidence have been for my being “OK” living, or dying. I pray mostly for the grace to do either well; to accept God’s plan for me. What frightens me most, because I really don’t want to die however, is recalling a bodywork experience (somato-emotional release at the Upledger Institute in 1995) in which, as is customary in that process, my body told the story of unremembered traumas. Confronted with the undeniable evidence that these traumas had occurred, it is then possible to ask one’s “inner physician” for the details, the emotions and vulnerability felt, and then re-process this as an adult. (I have chosen not to work this way in my work with others, preferring a gentler unfolding, which as I said before, releases the energy of such events without re-traumatizing. There is debate within the field about this, but I am simply relating my personal experience here.)

The event that occurred that concerns me is one in which I found my body curling into a fetal position. “Guess where I am going folks!” I quipped. From within the fetus spoke a very pissed off soul, “Why me?!! (being born to this alcoholic woman who is going to poison me?!!) “ To break the cycle”, (of family dysfunction), I heard in response. Not satisfied, I asked again, “ Why ME?! (Thinking of my sisters who, to date, have had much greater challenges in life than I - this made no sense; we shared this troubled alcoholic mother.) But a response came, “ Because you have the fortitude. ” The person who came off the treatment table was not the same one who first lay down; friends who had not seen me in the following six months did not recognize me when they first saw me. The experience was transformational. Hence my love and reverence for working with the body as a tool of self transformation.

But my concern: I wanted to break the cycle of dysfunction in my largely talented family. How I feared passing on to my children on the rage and anxiety I carried for my whole life! Years of therapy and self examination were all with the intent of my own healing, but even more, my children. But from where I stand now, the job has been done. I am in awe of the strength and wisdom of my sons. I know that they will be OK, and that their children will not inherit the legacy that passed down through family generations. So the fear that brought the tears this morning was of wondering if God’s plan for me had been accomplished, and he was going to take me home. But how could he? Am I not allowed to enjoy the happiness of becoming, at long last “fully formed”, a phrase borrowed from one of Sarah Ban Breathnach’s essays in her wonderful book, Something More, Excavating Your Authentic Self? Are ten years of happiness all I can have? Will I not be able to share the gifts I have been so blessed in acquiring? These are the laments of the early morning. I hate that Charlie has to bear this. I love, and am ever so grateful for his arms, around me.

Despite the fears and turbulence in the darkness of the early morning hours, I have anchors to steady my listing. Charlie’s weight is unfailingly present. But there are other reasons to take heart and to believe that I will survive. You may be amused, or skeptical, but the following incidents strengthen my belief that I will survive.

I received an excited phone call from my daughter-in-law a month or so ago. Martine is British (which is neither here nor there). But has long been a family tradition to consult psychics, and soon after moving to Las Vegas a number of years ago, she located and began to consult one there. This woman’s ability to describe what challenges my DIL is facing is uncanny, and her predictions of the outcomes of these challenges have been amazingly accurate, and a source of comfort in shaky times. What is most interesting to me is that without having been asked anything about me, this psychic woman offered that Martine’s mother-in-law was facing a health challenge...in the chest....a female thing; she would have a roller coaster year, be poked and prodded a lot, but ultimately would be OK. Amazing, could this be true?

With my interest and curiosity piqued, I decided to take a friend’s referral to a local person with the same talent, interestingly, an ordained minister. Without informing her that I was facing any health problems, she proceeded to give me an almost identical reading!

And then, there is my own intuitive sense. It has always been there when I work with my clients. I am used to getting strong thoughts, sometimes an almost audible voice saying, “ Stop! ” (don’t move to another holding position.) Or “;Don’t move.” Or, my eyes might be might drawn to a specific spot on my client’s body, letting me know that I should apply my manual skills there next. (This is very common among bodyworkers who have developed the ability to be very present and to trust their intuition, by the way.) These “messages” (or inner knowing) had never spoken to me until shortly before I met my husband in 2000, however. The truth of a prediction I “heard” regarding a personal situation was borne out, and opened the way for me to trust the snotty little voice I “heard” saying “ Pay Attention! ” when I first met my husband. A week later I heard “Your life is about to chay-ange!” It is interesting that the home I had intermittently tried to sell for three years sold two months after our meeting! But back to “the voice.” A week after my mastectomy in April of 2003, I heard, “ You will face another challenge, but you will be OK. ” It was because of this that I returned to the doctors time and time again last Fall and Winter when I felt fatigue setting in, months before the CT scan showed the tumors and five months after a physician medical intuitive confirmed the recurrence for me.

There is more, but I will be brief. I find that if I get tired, I dissolve into tears. “I just hit the wall,” I said to a friend in explanation at the end of the day as tears began to stream down my face.

The “more” has to do with the regular assistance that I have experienced at every step along the way of the journey. Some would call this synchronicity, or being in the flow. The psychic in Las Vegas also said that I was surrounded by angels and that I needed to learn to listen to them more. So with every door that opens when I need it, and every shift in schedule or plan that proves to be a better way than I imagined, I am increasingly convinced that someone has my care well in hand and that God does, indeed, have a plan for me here on Earth.

August 12, 2005 - Homebound For the Weekend

I am in the nadir period following my chemotherapy infusions. The nadir period is the point at which blood counts drop as they are expected to do. It usually occurs between 7 and 10 days. The three counts that are important to follow (in addition to the blood chemistries - sodium, potassium, protein, and liver enzymes, etc.) are the white blood count, the red blood count, and the platelets. You may recall that my white blood count dropped very low last time, to 0.6. The white blood cells are our immune system soldiers. If we do not have enough, infection easily sets in. My blood, therefore, is drawn once or twice a week. If low, contact with crowds is avoided, special efforts to avoid contact with bacteria are made, and attention to hand washing becomes meticulous. Every time I pet Bella, my constant kitty companion, I thoroughly wash my hands, for instance.

Yesterday’s counts were low, not dangerously, but enough to stay home and monitor my temperature. If the pattern is the same as last time, it will drop further before heading back up. Eating cooked foods is important at this time as is avoiding prepared deli foods.

My platelets, important for blood clotting are also down as they have been before. There are a number of things to watch for as well as precautions, such as using only an electric razor, that I will follow, but I won’t bore you with them. Watching for bruising is advised.

The third count that is especially important is the red blood count. The red blood cells carry oxygen to all of our cells. I have been told to expect to need Procrit or a blood transfusion to restore them to a safe level before the chemo course is done. I am not at the defining low point to date. A slight rise surprised me and delighted me yesterday. It does not seem likely that such a small rise could make such a difference in my energy level, but I do have more energy than before.

I have had several questions about this kind of thing, so I decided to give some info. It’s a good day - a day to embrace life and to feel the expansiveness that comes with feeling the joy of it.

PS: A thought from Jogging Through Space, an amazing story of recovery from a life-threatening illness by Mary Morgan Mc Knight, M Div. (this book was a gift fro my friend Kathleen and is a treasure.)

I would love to hear yours. Ethlyne

August 16, 2005 - Health is emerging

A major shift has occurred within me. My lymph nodes are smaller, My energy is rising, but more than that, a sense of a solidly vibrating sense of health is emerging. I can feel it humming when I quiet myself. There is a dance of dragonflies, a wellspring of gentle waves, and when I invite my breath into the flow, I can feel it filing all the spaces.

Happy Day!

August 26, 2005 - A quick note from Zion

I return home today from chemo round number 4. My morning is full with packing, breakfast, ordering my nutritional support, meeting with my counselor, getting my Neulasta (to prevent a very low white blood count) and a pill to prevent nausea. The best med seems to be Emend, which my hospital insurance covers, but my pharmacy coverage, Express Scripts does not, stating they will not because each dose is “unit-dosed”(individually packaged). I assume this is because the cost would be more, but it actually falls right in line with their $100.00/pill that they allow for being dispensed in a bottle. (Of which I pay about $67.00 of that $100.00.) The kicker is that all of the 12 participating pharmacies in Lynchburg carry Emend only in unit dose, as does the local pharmacy here. Last time, my brother-in-law gave me his (since he couldn’t swallow them.) So this time, I will get as much as I can here for it’s lingering effect, and I will rely on other meds tomorrow. Sorting out the reality of my coverage took an hour and a half of phoning pharmacies and navigating the prompts of Express Scripts. Fortunately I was tied down with chemo for 6 hrs with little else to do! I can appeal this by letter, but I am sue they make the process deliberately difficult to navigate to discourage one from bothering!

This visit here has been mixed bag of frustrations and gifts. My nodes on the left feel smaller, but their may be some on the right side now, and for the first time, I am showing an elevated blood tumor marker, which could either be an indication of disease spread, or possibly an indication of the release of that protein as a result of tumor breakdown. I will be scanned from stem to stern next time, in 3 wks.

Despite this, I feel a steady confidence that all will be well. My inner self spoke clearly of this during a guided imagery session this week. I was told I would live to do my healing work, which I miss very much. When I return to it, it will be with a much gentler focus, less business oriented, with a small practice. My focus will be on family, enjoying being a wife and mother/grandmother first, and taking care of myself. I see a small organic garden and some creative work in the future, something I have never taken time for. And of course, honoring my passion for sharing my skills as a nurse massage therapist on a part-time basis.

This was not so short! I am off to a counseling session, and then to a massage followed by lunch and a limo ride to O’Hare!

Blessings-

September 4

“[One] aspect of courageƒis the courage to commit ourselves to living profound lives, to living in the most meaningful and valuable way. I believe finding and manifesting this kind of courage in our lives is the key to discovering our true potential and establishing victorious, happy lives.” (Tariq Hasan, Living Buddhism, July, 2005, p.9)

My friend Jennifer, who coordinates the Lynchburg Nicherin Buddhist group included this quote on the September events calendar. I want to talk to her about this statement. What is a profound life? (I can’t begin to define that.) How does one live in the most meaningful and valuable way? I am not clear on what Tariq Hassan means by that, but I know that in this time of a threatened life, it becomes increasingly important to me to discover my true potential, and it would be my heart’s desire to have been considered profound in some small way by those who think of me. (That ever present need of mine to be special in some way?) As I muse on this, the word fullness, as in fullness in being, comes to mind. And with fullness of being comes the perception that fullness comes with the ability to breathe in one’s experience completely, which in turn requires being fully open and present to it at that moment. I am getting there, perhaps, but what about courage? This is where I feel I fail the most.

Yesterday was the start of a 3 day “Simplicity Sale” conducted from my side porch and spilling over into the yard. There were many reasons to do this: first, to energetically free up the stagnation of un-used objects. There is a belief that releasing the old and unused will make way for new energy to come in. Surely my life “after cancer” will be very different in many ways. I am eager for that vision, some perception of what my new life will look and feel like to emerge with vitality. In these days of low blood counts and little energy, I am eager my new life - bring it on! On a less lofty level, should I not survive, I do not want to leave a mess behind me. So there are many good reasons, along with the inspiration of my favorite home and garden television shows, to clear the clutter and get down to what is really important.

Returning to courage, and living my life in the most meaningful way. I am not sure if I can meet that mark. But yesterday was one in which the meaning of friendship was incredibly profound and the courage of these friends to come and help, to take over without even seeming to, to observe how weak and incapable I am without letting on how apparent it was, showed courage and life in it’s most meaningful forms. They observed how painful it is for me to chew with the chemo caused mouth soreness without making me feel self conscious. They let me feel like me despite my inability to do more than spin my wheels. They gave and I received. For me, that might me my most courageous act. I am not sure. But I do know that the act of sitting with my caring friends and listening to my son’s enjoyment of the OSU game (he flew down to help as well.) was one which I breathed in with a fullness of being.

September 6

My son Alex flew down from Ohio to help me with my “Simplification Sale” It is so good, but bittersweet at times, having him here. I am so proud of him! As a child, our morning wake up ritual started with his saying “Scratch my back.” That was the same on his first day here. On the second, it was, “Rub my back.” Does it hurt? I asked. “No, it would just feel good.” I broke away at one point, swallowing my tears. “That’s all you get for now,” disappearing to find a place to release the flood of tears. I love that “child” so very, very much...Despite my optimism, the fears of having little time with those I love are very very real. They surface every time I talk with a dear friend I don’t see often, and I wonder, is this the last time? But how does this fit with my unrelenting optimism regarding my survival? Clearly, I have been reassured on many levels that I will beat this! My hope is, believing in the polarities in all our experiences, is that this fullness of fear is more than balanced by my certainty of survival. And that my fear does not mean that my survival is in question, it just is there. Marion Woodman, a Jungian therapist would call this “holding the tension of the opposites.”

And then, there is the reminder of the importance of the moment. My Bella kitty will accept no less than my sharing this moment with her. Her kisses and rubs are all that there is now.

September 9 - Questioning and Struggle

“We too often forget that faith is a matter of questioning and struggle before it becomes one of certitude and peace. You have to doubt and reject everything else in order to believe firmly in Christ, and after you have begun to believe, your faith itself must be tested and purified. Christianity is not merely a set of forgone conclusions. Faith tends to be defeated by the burning presence of God in mystery, and seeks refuge from him, flying to comfortable social forms and safe convictions in which purification is no longer an inner battle but a matter of outward gesture.”

— Thomas Merton

I found this in Sojourner’s web journal this morning. I must admit that I don’t understand it all. What does he mean by the “burning presence of God in mystery”, for instance? But I can relate to questioning and struggle and being tested as my spirit and faith are flagging in response to the chemotherapy. It is only the knowledge that this is an expected side effect for me as a person with environmental illness, reactive to perfumes and molds among other things, that pulls me out of a state in which I am totally overwhelmed into a place where I can ask myself, “What do I know how to do to counteract this reaction?” (And I do have some tools.) The depression and despair are familiar. However, this hopelessness is overwhelming in a way that I have never experienced before and it scares me. Fear of losing my will to live was the reason I chose low dose chemo in the first round of treatment. I recall explaining this to my conventional oncologist and saying, “If I lose my hope I may not survive.” Clearly, the evidence is there for the effects of depression on the immune system. What state can my immune system be in if my lived experience is of preferring to die than feel this way?

The good news for me is that even as I struggle to find the God that evades me at this moment, I know that that Divine Presence is still there. I just need to remove the filters that are blocking it. Help me, dear friends. Send the light of love through your prayers as I struggle to remember to do mine. Reach out to my beloved Charlie whose burden is great.

We are leaving on Sunday for a week at the Cancer Treatment Center where scans will reassure us that progress is being made, and we will learn more about how long the chemo will go on.

Many blessings to you,

Ethlyne

September 20 - Fall Is Here

Fall, a time of transition is here is coming. There are hints in the trees of the color changes to come, and the chill that will follow. It must be time to begin packing up my summer clothes and seeing what will fit now, with the added pounds that I have gained, so typical of the time of breast cancer treatment. Thankfully, it reached a point, about 8 pounds, and has climbed no farther. My hope is it will begin to drop off with the lack of appetite accompanying my new chemotherapy treatment.

I was scanned from head to tailbone last week (a CT scan) at CTCA. It was time. I had had one therapy cycle of Adriamycin along with Cytoxin in June. By the time I returned 3 weeks later for my second round, the chemo resistance testing showed that my tumors, nestled near my left clavicle and the nearby blood vessels, (approximately 5 after the surgical biopsy had removed another 5) were resistance to Cytoxin. We then switched to Adriamycin over 3 days followed by Taxotere. When I arrived last week, I had had 3 cycles of A/T, and it was time to re-evaluate. Not only was it time according to medical protocol, it was time for my flagging spirit to know if any progress had been made. The chemotherapy was taking its toll on my body, mind and spirit.

Charlie was with me when I got the news I was free of disease. He was excited. I was numb. I sent off an e-mail to a number of my closest friends, but the happy rose filled background I created was only in the cyberspace text, not within. And it is still not there. The numbness persists. I will have a combination CT/ PET scan on Friday to confirm there is no active disease. Perhaps my spirit is waiting for that confirmation. The CT scan, by the way, can show abnormal lymph nodes, those of a given size, but the PET scan shows increased metabolic activity, the rapid uptake of glucose by cancer cells. If within the normal measure of uptake, I then will have one to two more treatments before being put on an estrogen hormone modulator. Pathology reports have shown that estrogen stimulates my tumor cells, so the drug will decrease the circulating estrogen in my blood. I will be on it for at least 5 years. By then, I am reassured there will be new drugs if needed. They always remind me of the likely chronic nature of this disease, but I remain convinced this is it for me if I take care of myself.

September 22, 2005 - Only Two Days Since the Last Time?

My last entry seems like an eternity ago. It can’t be just two days ago! Time is surely slowing at this tail end of treatment. My body, having done amazingly well with the support of integrative care, is finally falling apart. On my last visit to CTCA, I expressed fearfulness of heart damage from the Adriamycin. A dream - a nightmare, actually - in which my heart failed after an infusion of this drug was especially disturbing as recalling my dreams is highly unusual for me. But heart damage is a well known side effect, and a baseline cardiac ejection fraction test, a MUGA (I have no clue what that stands for, but know that it measures the ability of my heart to effectively pump blood out of the left ventricle,) was done before I was started on the med, and again at my last visit. The test showed no change, but my ankles have a new swelling, so we switched to a new drug, Xeloda, which is oral. (I shared my dream with Dr Granick, and I don’t have any idea what he thought about that, but he made the change.) I will still have the IV Taxotere, but since that infusion is only for 2 hrs, I will have it here instead of traveling to CTCA. I am very thankful that Lynchburg Hematology and Oncology will provide this for me. So many of the patients who travel to the Cancer Treatment Centers of America are told they can no longer be patients of their local doctors. I find this very sad. There are many who do very well without the supportive care that Integrative Medicine provides, but there are others of us who cannot tolerate the chemotherapy drugs without it. Being treated in a comprehensive, coordinated setting in which nutrition, acupuncture, massage, stress reduction, prayer and personal empowerment are part of a coordinated plan has not only helped me through, but has been in integral part of my healing. I will never forget the “wash” of peace that came over me prior to surgery when Pastor Jim prayed over me. He is a true healer. And the depth of relaxation and felt sensing of activity in the area of my tumors during guided imagery were amazing to me. I must wonder if local doctors who will no longer serve their patients who choose this approach must feel rejected on some level. What they fail to realize is that their area just does not have the same service, no matter how good they are as oncologists and caring persons. That the effort of flying there was offset by a breath of relief, much like that of coming home, each time I entered the doors of CTCA must mean that it is truly a healing place.

But here I am now. The Xeloda is overwhelming for me. We are stopping it for a day and restarting at a reduced dosage. Thanks to Dr Oldham telling me there was “room to decrease the dosage if needed”, I knew to broach the subject with my CTCA doctor, who said “definitely” reduce it, and stop it until the symptoms that were making me bedridden, and turning two days into an eternity, subsided. Being knowledgeable about my care and having a team of my choosing has worked well for me. And again, having both a local physician and the CTCA team on my team has been a real blessing as have the prayer teams and personal prayers of so many here. Not to be forgotten are my husband and friends. I must admit that there have been many times I wallow in my misery as if I were alone. I feel shamed at the moment as I review how large and powerful my healing team is, some chosen, others choosing to join, each fulfilling vital functions. Hearing of two friends doing a victory dance in the hallway at Virginia Baptist after hearing of my clear CT scan really brought this home to me. And the brick two friends purchased in the Awareness Garden will permanently memorialize their loving support and serve as a reminder to me if I ever feel alone and abandoned again.

Next: the CT/PET scan with results on Tuesday. I am less numb, but not able to do the victory dance yet. When it is confirmed I am disease free, the question will be, “Who am I after breast cancer? What do I want my life to look like?” I don’t know if I will be able to answer that until I am done with chemo and I feel a resurgance of my life force. My friend Ruth says my theme song must be “Let it Be.” She is right. I have no energy for anything else.

September 29, 2005 - Time for a Victory Dance!

I found out two days ago that my CT/PET scan showed no evidence of disease. I have been unable to share it here until now. Charlie was ecstatic. I was numb, and filled with a sense of not knowing who I was and where my life was headed. These feelings are not new, as you are aware from my last entry, but on Tuesday I experienced that feeling of being a lost soul on a much deeper level.

But now, things are shifting. My ever-wise friend, Ruth, says that it must be like the end of a roller coaster ride, where one must sit stunned for a few minutes (I do not know myself as they have always terrified me!) It makes sense, however. And I will admit that Tuesday’s emotions were tempered by agreeing to restart Xeloda, an oral chemo that I was convinced would kill me, and stopped after seven days, telling Dr Granick at CTCA that the drug “scared the shit out of me.” After Dr Oldham reviewed my options, and calculated that I could still get a therapeutic effect from a much lesser dosage, I agreed to restart it. (The alternative was scarier.) For me, that was like agreeing to go off the high diving board, which I bravely did in my teens, but, oddly, found so increasingly scary that I eventually gave it up. Dr Granick emphatically agreed, no doubt relieved that Dr O. had made me see the light, so I proceeded to badger poor Dr Oldham with detail questions regarding this and that, admitted that I had neglected, in my dedication to natural medicine, to follow his advice regarding taking Pepcid for my inflamed esophagus and stomach which had made eating so painful. I can be stupidly stubborn, I will admit. Stubborn and forgetful as every time I intended to try it, I forgot to pick it up. Chemo brain plus stubbornness can be liabilities, for sure! And while I am self-flagellating, I will congratulate my doctors for caring for me despite my efforts to control every last detail. (I won’t get too upset with myself, however, as many authors say taking charge is a hallmark of survivors.)

The other factor, as I struggle to make sense of my own lack of affect regarding such very good news, is the lack of vital force, of energy, after 4 months of chemo. I began having acupuncture here, with Matt Miller of East West Acupuncture, last week, and I am beginning to feel a flow of energy I have not felt for a month. Yesterday’s moxibustion was especially helpful as it had been at CTCA. Matt explained that moxibustion was frequently used in cancer patients in China, and that studies had supported its ability to increase immune system function. I will continue with regular sessions, and try his Tai Chi classes. It’s now 34 days and counting! My body does not have the energy for a victory dance as yet, but my spirit is beginning swirl with possibility, and you are invited to “join” Ruth, who promised to do one for me.

October 4, 2005 - 29 Days and Counting

This morning, as usual of late, I burst out of the starting gate with great enthusiasm, my eyes set on accomplishing a list of varying normal type of things. Yesterday, sending off a stack of things to the post office was number one on my list. Saturday’s efforts of addressing and packaging books to my son, a long promised audio tape of one of Charlie’s sermons to my nearly 100 yr old, amazing, friend Gertrude, thank you cards, and other odds and ends resulted in the dresser in my study being cleared for the first time in months.

But let me tell you about Gertrude, whose husband was a home health patient of mine before he died. Gertrude had been legally blind due to macular degeneration long before we met at their farm house in rural Virginia. At that time, she was caring for her husband who had diabetic stasis ulcers which required scrubbing and dressing three times a day. The process required getting him into the bathtub, which at over 6 ft and 250 pounds was no small feat for this little woman who also cooked, cleaned and mowed the yard on their riding mower, navigating the steps to the yard with the aid of yellow paint edges marking their edges. She could have had housecleaning services from the county, but as the workers were not allowed to move furniture, a weekly practice in her cleaning routine, she sent them home. This same program would not permit their staff to change light bulbs either. I recall walking into a dark kitchen of another patient one day, finding the patient, a disabled relative and the worker all gathered around the table drinking coffee in the shadows of the light cast in from the adjacent living room. The light bulb in the overhead fixture had burned out. With no small sense of amusement, I climbed up and changed the bulb quick as a flash, smiling with the knowledge that a story of the jack of all trades rural home health nurse was being created. But Gertrude, a woman of daily devotions and vitamins crushed into her yogurt and wheat germ, is the heroine here. After George’s death in her late 80’s, decided to move close to her relatives in her home town of Detroit, and then to move back to Ohio again into a small house in town to be near the friends and support persons she was comfortable with, as well as the sounds and smells of the country. In that house she lost her vision totally, and after getting lost in the house one time, frustrated with not knowing which room she was in, she tied string from room to room and followed a certain order in her day which kept her from being lost. After an unsettling episode between the mailbox and the house, she did the same outside. All the while, she cleaned the house on her hands and knees by feel. Thankfully, surgery restored much of her sight, and to this date she lives with minimal assistance in a senior apartment complex. The hardest thing about leaving Ohio was knowing that Gertrude would no longer be the matriarch at our holiday tables, a tradition that began after George’s death and hearing of her discomfort with the smoke and chaos of a house filled with small children at her niece’s house. Charlie and I visited with her before we left for Florida in 2000. She placed her hand on us and delivered a blessing that amazed Charlie. He has shared that story and his wonderment at her grace filled eloquence with his pastoral friends a number of times.

Well, 29 days of chemo and counting. Yesterday’s enthusiasm for the tasks at hand were lost to an article I am writing for my professional organization, the National Association of Nurse Massage Therapists, a rare phone call from my son in Las Vegas, and interacting with the workman repairing the stucco on our house. By the time my friend arrived for our lunch date, I was not ready, and I had to scramble. My energy flagged greatly during lunch, so we side tripped to the oncology office for blood work and a shot of Aranesp, a red blood cell booster, and it was back home for some more woman to woman chat. The post office packages are still in the entry hall. The other tasks on my list are still waiting. And I best get busy.

29 days of chemo left. My heart is bursting with the possibilities for my life, and my hands are beginning to itch. I am eager to touch. I told Charlie he would be my first client.

And dear Friends and Clients, I plan to be ready for a small practice starting in January.

October 10, 2005 - So Near But Yet So Far

So near to the end, and the return of normalcy to my life, but yet so far. I awakened this morning, sick, in pain, and crying, "If this cancer returns, I will not go through chemo again. I am a coward." And I am forgetful in how a few pills can help me through. Hours later, it's a whole new day, now only slightly sullied by nausea and weakness. Amazing how being able to moan and groan on this "blog" helps! How many days? Let me count them...23. Between then and now is my birthday, and a gathering of friends on that date (Fri, the 14th from 7-10 pm) at Wiskers, a downtown restaurant, where Charlie will play his sax, and we will celebrate my recent scans, showing no evidence of disease. Charlie is playing with such delightful abandon. My lack of disease has clearly lightened his spirits, and the smile I first saw when we met has returned. His whole face lights up. I am eager for the time that mine will reflect that joy. My light is still too dim...I am eager for Tuesday's acupuncture which will bring my energy up. My blood counts undoubtedly down at this point, may have begun to rise by then as well. But now, my dreaded chemo pills await as do the scattered mail on my desk.

October 19, 2005 - Roller Coaster

There have been many who have suggested I write a book. The thought is daunting. But the title is pretty clear, at least the lead off., "Roller Coaster......" These past nine days have been frustrating for the lack of internet access, my tie in to the outside world, and for having to reschedule a celebration of my clear CT/PET scan due to being sick as a dog. A chemo induced skin infection had me down and fearful it could be more widely systemic. Thankfully, it was not, and I am on the mend. My body seems to be resilient and Sunday had me out with friends after doing some long awaited chores. Monday's acupuncture raised my Chi so much I was sleepless, lying awake all night planning my new life with great excitement. My wish list of thing to do must be prioritized, however, as I could be busy for a year with it all! Best of all, given the side effects that plague me from the latest chemo, and the fact that I had taken almost all of it, I was hopeful we could call it quits. A re-scan had already been scheduled for January 10th.

So...just after setting up an appointment with Donna, of Forest Wellness and Massage, where I will be seeing clients when I am ready, I saw Dr Oldham. And Dr Oldham found a node, thought previously to have disappeared. Any thoughts of discontinuing chemo are, for the moment, out the window, and who knows what else is in store for my beleaguered body. Despite a fit of rage and a bucket of tears last night, I remain convinced that I will be well soon, however, and that my life's purpose will be revealed and realized. And I know I must get busy right now, while I am feeling good, with household and other stuff. Fall fashion is on my mind. Wait until you see my new pinwheel cap!

October 27, 2005 - Year End Run

I hate waiting. It frustrates me. I've got lots to do if I am going to start 2006 disease free. And as the CTCA informs me I "have a very small amount of disease," let's get busy folks! But the bureaucratic wheels turn slowly. The proper forms must go through all the right channels just to get the appointments I need.

To catch up my faithful readers, to whom I apologize for being a slug, I will share that after two weeks of being chemo-free (I couldn't tolerate it any longer, one week short of the full course) a burst of house cleaning and decorating energy caught hold of me in a fit of fabulous well being during which I had no thought of anything disease related except for getting the house ready for Thanksgiving while I could. Then inertia set in. My recheck at CTCA following the clear CT/PET confirmed the small lymph node that Dr Oldham found. Apparently its size and low activity caused it to escape the CT and PET scan's detection. I told the oncologist that I wanted to be cured (Do be warned that telling me that you are happy I am "in remission" will let the bear out of the cage to inform you that to me, remission is a dirty word. Only "cure" or, if you must, No Evidence of Disease is acceptable. I believe in the power of words. To me, remission brings the thought of exacerbation as a possibility. I am not going there.)

Having reaffirmed my desire for a cure with the oncologist, I then asked him the best way to get there in his opinion. He answered radiation and hormone modulators to decrease the amount of estrogen circulating. So he drew an estradiol (bad estrogen) level at my request to have a baseline before beginning to take Arimidex, and sent me to the radiologist who informed me, unasked, that not having radiation the first time had been a good clinical judgment. He acknowledged there was some debate about it. It was interesting to me that he brought it up - to reassure me I had not made a bad clinical decision for that time and place? I, of course, have done some Monday morning quarterbacking: "I should have had radiation. I should have had full dose chemo." But even there, with knowing how chemo has affected me now, trying low dose chemo was not a bad decision for me. So I am at peace, finally, with my 2003 decisions. There is something I am to learn from this all. To stop striving is one. To have a plan, but to let go of control in some aspects is another. I don't feel able to actualize that until my treatment is done, however. Every time I back off from my vigilance regarding my treatment process, an error or omission is made. So letting go of control I don't see as an option at this time...

So, I am waiting for confirmation of an appointment with a radiation oncologist and with the breast diagnostic center for my yearly exam and "look-see" at a lump that has changed, but which my body (inner knowing) tells me is not CA. While waiting I will call my physician/naturopath in Ohio to ask for an order for non-mainstream saliva and urine testing of my hormone levels to get a better breakdown. If I am going to interrupt my normal enzymatic pathways by taking a hormone modulator, I want to know that it is doing its job. I will then begin a regular morning sitting practice of prayer and meditation that has been so difficult to do while affected by chemo. I am very thankful for all of my prayer teams out there who could do what I had such great trouble doing in this time. And I will get on the treadmill. Do you know that a study showed that 3-5 hrs of exercise a week reduced breast CA recurrences by, I believe, 50%? I doubt here is a drug out there that can do that!

November 2, 2005 - No Node!

What wonderful news, thanks to the gentle and skilled fingers of Dr Oldham, my local oncologist. He had found the small (2-3mm) node that had escaped the detection of the CT and CT/PET scan. And now he has confirmed that it is gone. Oh Happy Day! Clearly the chemo drugs have hung around in my chemically sensitive body. The fact that my white blood count and platelets have dropped even in the absence of any chemo for almost a month and the onset of skin peeling on my feet as a new side effect just last week indicates to me it was still doing it's work as well. But there is another unknown factor, and that is of wonderful energy work I received from a very talented healer, Trula Crosier, two days ago. Before that time, I could feel the node. Suddenly, no node - two days after a session in which we felt a burst of what felt like bound up energy release from my head and neck. My inner guidance is now saying, "Don't do radiation." I ask, "Will it hurt me?" The sense is "No." But do I dare not? I don't think so. I can't get any to a clear answer right now. I am too manic with the energy of feeling good for the first time in a year. I spent 14 hours in productive energy two days ago, except for the 45 min I spent on Trula's treatment table. There is so much to catch up on. You might wonder if I am preparing to reopen my practice; but no, not yet. I must gain some sense of what the message has been with this interruption of my life. Surely there is something I must need to know or change in my life. I know that the business building mode I was in is not one I want to return to. My first work will be as a volunteer with cancer patients, perhaps, and at a donation based clinic at my church doing energy work and teaching these clients to work on themselves. I have long wanted to do this. My task before this, however, must be to develop a healthcare routine that will ensure that I am doing my part not to allow breast cancer to be a chronic disease for me. To that end, I am exercising daily, the treadmill being the biggest challenge due to the effects of the chemo on my legs. It is like moving fence posts right now. Studies have shown that women who exercise reduce their recurrence rate by as much as 50%. I do not believe there is any known drug that can do that at my stage of disease. I must do the work of eating fresh foods, organic when possible, and juicing to increase my anti-oxidant levels as well as regularly detoxify my body. I must do regular energy work, and have bodywork to maintain my best level of functioning. And I must take care to attend to my emotional, mental and spiritual life. So you can see - I have a lot to organize, even as I realize that my husband needs care after these long months of caring for me. I am overwhelmed as I think about this. Getting help with reducing my mania and establishing my routine in a way that makes sense is my number one priority. I can work on this as I finish a round of medical appointments which will include a new baseline bone density due to the fact that my estrogen levels will be therapeutically reduced by the hormone modulator, Arimidex, that I will be on for the next 5 years. The weeks of radiation will be good ones to begin getting into a routine that works for me as well.

To my faithful readers - I know there are a few. I plan to direct my writing time toward very personal journaling for the next two months and perhaps some other writing. I have written one article for the National Association of Nurse Massage Therapists' newsletter, and there are some other nursing publications I am thinking about contributing to (if they let me!) and I am thinking of a newsletter for those of you who might be interested. Please e-mail me if you are interested in receiving an on-line newsletter, e-mail me through the "Contact us" button or ethlynedavidson@hotmail.com, and I will put you on a list to receive it. Thank you for caring enough to keep up with me. I consider you a part of my team. And I thank you for that.

God Bless You,
Ethlyne

January 28, 2006 - Six Treatments Left and Doing Well

Dear Friends,

Thank you for continuing to check on me. Kate Gombos, my wonderful web master, keeps track of such things. I do not know who checks, but I know the numbers. What a wonderful feeling to know so many are interested after all this time!

As you may recall. I began this cancer treatment journey in June, opting to travel to the Cancer Treatment Centers of America's Zion, Illinois facility. Given the fact that my breast cancer had returned in 18 months despite my alternative (low dose) chemotherapy, I decided to "bite the bullet" and go for aggressive conventional treatment - chemo followed by radiation. Being an Integrative Nurse, however, I felt that I needed a facility that was skilled in killing the cancer while supporting the host ( a CTCA motto.) In fact, with my history of Chronic Fatigue Syndrome and Multiple Chemical Sensitivities, I was convinced it was necessary for my survival and quality of life. The treatment course, especially chemo, has not been easy, but from this vantage point of near completion (six radiation treatments of 35 left,) having Integrative Care has served me well. I have been in Zion since the Monday after Thanksgiving with a three day break at Christmas and a more recent 10 day hiatus to heal my radiation - inflamed and broken down skin. During the chemo regimen, I was home 3 wks and then bcak for three days. The staff of Lynchburg Oncology and Hematology made sure I was lovingly followed at home.

Thanks to the sensitive and holistic caring of staff here, CTCA has become a second home for me. That is not uncommon I suspect as there is, periodically, a group entitled, "Bridging the Gap" to help persons make the transition from a place of consistent affirmation, love and support, to the more real and less predictable worlds we live in at home. My biggest challenge will be to care for myself half as well as I am cared for here. It has been wonderful to have all meals at the ready three times a day, with much of the food organic, and snacks as needed. The kitchen staff ministers to us as faithfully as the pastoral care department; I mean this in a very real sense. They dispense love along with their healthful food. (Their burgers and fries, and donuts are always available, however, providing occasional dispensation from what I hate to admit often feels like "being good" instead of choices I would like to come naturally.)

My days are presently short here, with my morning energy and enthusiasm gone soon after my one pm radiation. I frequently get horizontal for awhile before supper. But my mornings often include offering "tune ups" with my Solfegio Tuning Forks to staff and patients, a 4 minute procedure that does not tax me, but brings relaxation and stress reduction to the recipient. I have also written an article for the employee newsletter and have been invited to offer a presentation to the nurses as part of their "Nurses Nurturing Nurses" initiative. I have been thrilled to see such a program as I long have felt that patient care is enhanced by the intentional support of nurses. Unfortunately, few facilities do more than lip service to it. But I believe that is changing, coming along with the realisation that patients need patient centered care and empowerment. CTCA has certainly provided both for me. Being able to maintain my identity as a nurse massage therapist with something to offer and being assisted in my faith journey have been very important contributions to my emotional well being. For other patients (or guests as we are called here,) it is other things. Being treated as individuals with individual needs and treatment plans is part of what makes CTCA a special place of hope and healing. As a nurse massage therapist, I recognise the sigh I experience when coming through the front door on a return trip as a conditioned relaxation response, much like the ones my clients exhibit when they begin to relax on my table, or when I see my husband Charlie waiting for me at the airport.

My hope for the future is to return to a small practice, home based at some point, and to help foster the building of a community that knows how to help persons with cancer and other health challenges; to help build a community of hope. I do not know how that will manifest itself as yet, but that is OK. My intention is to "go with the flow" - to live my life gently, offer my presence, and see what develops.

Thanks for listening, and be well until I see you.

Ethlyne

April 21, 2006 - Coming Back to Myself

I continue to be amazed at how many are still checking my journal, even in the face of my silence, a time of silent struggle. This period if time since my last radiation treatment at the Cancer Treatment Center of America in Zion and my quick flight home, later that day in early February has been surreal. I am myself. I am not myself. The first two weeks home were joyful and filled with a passion for sharing what I saw and experienced in that healthcare setting. To that end, I quickly arranged for two upcoming events (more later) where the CTCA staff will share their experiences in providing an integrative approach to cancer care. At that time I had been started on an aromatase inhibitor, a drug to keep my body's estrogen from supporting the growth of any remaining cancer cells. That was fine, at first. But by the time I returned to Zion for a post radiation check I was miserable - in pain, fatigued and unable to think clearly. We stopped the drug for a week during which time I took milk thistle to help clear my liver of the drug. By day 5, I began to feel much clearer in my head and more like myself. I then started a second aromatase inhibitor which was fine for the first week. Then suddenly the same symptoms were back. I tried taking it every other day to no avail. I told my doctor, "These drugs are from my personal hell!" So now we are on to Tamoxifen which many of you may know about. Too soon to tell about this one, but I suspect we will change to a newer, similar drug which recently released studies revealed fewer of the dangerous side effects.

So where does this leave me in this month of May? Not ready to begin doing my beloved bodywork yet, but feeling the urge to try just a little bit to see how it goes. I had great fun teaching my barber at The Parlor how to give a good neck massage recently. (A barber suits the needs of my new short and curly hair very well!) May finds me moodier than I like. Is this depression? Sometime I feel yes, sometimes no. "Get your butt in (exercise) gear!" I say to myselfƒit is amazing that the pain that began with the aromatase inhibitors and which is very much still present when I awaken, can be nearly all dissipated with 10 minutes spent on my rebounder (a mini trampoline.) But aside from a few days of almost manic spurts of joyful housecleaning energy, I find that frequently I can only walk or stand for about 10 minutes at a time without feeling a wave of weakness. So I am looking at July first as being when I return to work. I would like, however, to share with you some of the "sit down work" (play, really) that began at the hospital and has continued since then. And this renewed ability to share lets me know I am coming back to myself!

The psychoneuroimmunology (read body/mind) dept. as CTCA has a number of activities that supported our wholeness. We sat and did guided imagery, quieting our minds and relaxing our tense bodies in the process. I feel that learning to do that opened the door for me to feel God's presence years ago while struggling with another health challenge. There is also writing, inviting one's inner voice to speak. There is drawing. There is laughter therapy. And then there was beading. And an obsession was born. I have always wanted something to express my creativity, and for now this seems to be it. "Ethlyne's Expressions" will soon be seen at Corset Corner, a lovely lingerie shop on 9th Street, downtown, thanks to the generous spirit of its owner, Susan Stoner. The peaceful process of handling the beads and contemplating the different arrangements fills many hours that I have not have the physical strength or energy for other things. It is interesting to me that it is not always peaceful, however. I have had to work at letting it be play, to put up with my mistakes, to learn to take apart and do again without frustration. I am getting there. My biggest challenge now is how organize my bead collection and work space so it works well. (That is secondary to the challenges of making mind focus and stay on track with my day to day priorities and to make myself exercise every day! The effects of chemo linger in my brain. My reading tells me that those cognitive deficits are permanent for 17 % of women who have had chemo. I am grateful to feel I am improving as time goes by and I learn to be less anxious about simple memory lapses and how to compensate for them.)

This time has been a time of visioning as well. Having experienced a hospital system infused with Hope, I returned wanting to contribute to building a community of hope for persons with cancer. Our church has a bulletin board which contains a "license plate" with the words "Dream and Do". This is the place for our members to write their visions of service for the church. I have several. The first is the building of a community of hope. To that end, I saw educating us about cancer, its treatments and how to support persons with cancer, the role of faith and spirituality and how to possibly prevent it as a first step. To that end, I have assisted in bringing two workshops here to Lynchburg in May. One is essentially lay ministry training (but appropriate for anyone interested in what cancer is and how it is treated), and the other more geared for healthcare professionals. Feel free to call me if you are interested. From there, I would love to see these interested persons participating in Centra Health's Congregational Care program for ongoing education and support. I also feel our Central Virginia Pastoral Counselors have much to offer us. Cancer is increasingly becoming a chronic illness, a unique illness for its ability to resurge and take one's life at any time. I would love to say cheerfully, "I am a cancer survivor!" I may be. But at this moment I am simply a person dealing with cancer as my constant companion.

My second dream is the creation of a CD for homebound persons with music and psalms. We were working on that a year ago and now ready to pick it up again.

And then, when I am ready, a free clinic for stress reduction and energy work, very possibly at my church. I have enjoyed my volunteer work with the outpatient groups at Arise and with Marion's House in the past. I would like to take it a step further with some individual work in the future and with training of other individuals to do the work as well. I will be doing a stress reduction group with our youth group early in May. I am excited about it, smiling as I write this.

So again, I thank you for your care and interest.

Be well until I see you,

Ethlyne

May 14, 2007 - Mother's Day & Limbo is not a lovely state

Mother's Day 2007

I miss my mother today. And it feels very odd to be doing so. I can recall only one other time since her suicide in 1969 that I have felt such a void. But here I am - feeling the void, in a previously unfelt way, which her strange and lonely death created. I am not present with my own motherhood, but with the child my own mother left behind to fend for herself and find her own way. I feel adrift, abandoned in a sea of an unknown substance with no sense of what it is in store for me next. I want to be held and rocked and soothed by a maternal presence with a depth of yearning that speaks of years of denial.....

Now, in reading and re-reading these words some peace follows freely flowing tears and I am hopeful some healing will come. Some say that breast cancer is a disease born from abandonment and lack of nurturance. And if I truly believe that acceptance of what is is the greatest change agent (healer) there is, then perhaps allowing my grief to surface will shift me into the cell repair and immune competence I most likely need. Most likely need as I am back at CTCA waiting for scan results and sitting with the knowledge of a suspicious looking lymph node near my right breast, worrisomely distal from my previously diseased, excised and radiated left breast and chest. Clearly, I may no longer have a regional disease. I am waiting to hear initial scan results. A bone scan and biopsy are yet to be done.

This waiting is unusual at CTCA. I have encountered glitches I never have before. It is frustrating, but put in perspective, I know that the wait for all of the tests to be done and data to be collected would have taken even longer at home. I am grateful for the preoccupation that preparing to talk to nurses at their National Nurses Week dinner brought and honored by the both the request and the responses. I am just as grateful for the support of the mind/body staff (and many others) and the center's encouraging me to move freely on the floor, using my tuning forks to balance both nurses and patients' energy fields. To a person, the nurses' words on Friday evening were, "I feel so much lighter." And I found the patients resting - apparently sleeping, a half hour later.

I took yesterday off. No reaching out- just resting and reading. I don't know about today yet. I still feel quiet, but I am in the resource library at the hospital with my tuning forks in my purse. Maybe I will go tune myself up.

May 16, 2007 - It has been such an anxious time.

Dearest Friends,

It has been such an anxious time. But I am convinced that even anxious times bear fruit. In the course of this worrisome journey I have been led into the recognition of deeply suppressed feelings. I have been gifted with the ministering of an evangelist preacher whose prayers have led to a deep strengthening of my connection to God. I found out that I could go ahead and attend to my passions in life without being diverted. (I prepared for my talk to the nursing staff here in honor of National Nurses' Week and have received much good feedback from the nurses) And I discovered that I can function as a forthright advocate for myself without undue anxiety. I hate that I have had to advocate in such a way here at my beloved CTCA, but there were many persons affirming my perceptions and actions along the way.

I have a biopsy and neck scan to go, but thus far all other tests have been normal. As I see it, my biggest task is to accept that even if I was right about this recurrence, there is always the ability for that to have changed. My ego wants my intuition to be right - but at what cost? Does focusing on the rightness of my knowing intervene with divine intervention or my own body's ability ot heal?

Clearly I have reactive lymph node. That can be seen on ultrasound. And I feel the pressure within. Thus far no one is offering any reasons why it would be reactive other than cancer. At the same time, they all point to the negative scans as proof of no disease. I will affirm that the biopsy will be the final confirmation of no cancer and we will then find ways to address the inflammation.

More than you wanted to know?....

Love to you,

Ethlyne

June 4, 2007 - Anger and Perplexity

I am perplexed this week, and unfocused. I am unclear about so many things in the presence of a pathology report which confirms a return of the cancer. I know quite a bit, but not enough. Now that the cancer has found a home in an auxiliary lymph node on the opposite side of my body from the first diagnosis, I wonder how it got there. I believe that node drains from the breast, but the breast is clear on mammogram, MRI and ultrasound. (My chest, abdomen, and pelvis are clear per CT, and most likely my neck as well. My brain MRI was without signs of pathology as well.) I will ask my CTCA oncologist, when I see him on the 14th. It seems to me that it could be a metastasis from a new cancer in my right breast - a new cancer permitted by the same internal milieu that fostered the left side, but manifesting at a later time. This would be good, I say, for being a new cancer would mean it had not traveled throughout my body seeding itself willy-nilly along the way. But another source, a physician says that it could be very well from the left side - it occasionally happens.

How can this be? I felt cured; I was getting my life back. And Mother Mary had told me I would be well. I have not written about my Mother Mary experience before, I don't believe. It felt too "out there". But this was my experience, and it was profound. But before I begin, it may be helpful for you to understand how I, as a non-Catholic, felt drawn to Mary. It began as a young girl, attending a Roman Catholic Church with my best friend, Julie. I attended regularly with her, enjoying the liturgy as well as the inclusion into her large Italian family on Sundays. We spent long hours at the table, eating course after course- antipasto, wedding soup, meat and vegetables and spaghetti. Then Julie and I would retreat to her room for giggling girl talk until Uncle Sal closed his pizzeria and brought home leftovers for us. My photos of us at that time showed two skinny girls. Amazing! At one point I began to react to the incense of the church and I could no longer attend. But I recall that that was the time I began to recite the Lord's Prayer and the Hail Mary all of the 3/4 mile walk to home from school. Saying the Hail Mary has remained a self-soothing tool ever since.

As you may recall, I spent many weeks at CTCA during radiation therapy. During that time, I frequently attended the guided imagery sessions facilitated by one of the therapists in the Psychoneuroimmunology (Body/Mind) Dept. On this one day, we had been led, in our mind's eye, to a place of deep relaxation - a place that we envisioned, one of beauty and serenity of our own choosing. It was then suggested that someone - an angel, a guide, or some other helpful person would then come to us with a gift. My place was a meadow bordered on the far edge by a row of tall cedars, and my angel - as I thought, emerged from these tall trees and floated toward me. When she got closer, I identified her as Mother Mary, much to my surprise. She was wingless, and dressed as we often see her in paintings, and the voice in my head that was mine greeted her with surprise, "Mother Mary?" I said. She responded, "Yes..." "You have a gift for me?" again she responded "Yes." I then asked, with some excitement in my voice, "What is it?" She said "Life!" Momentarily stunned, I then asked, "What am I going to do with my life, Mother Mary?"

She then shocked me by saying, "Healing, Dummy!" Well, I'll be! I'll accept that gift and the amusing revelation that Mary may have a sense of humor.

Our minds are a perplexing puzzle to me. There I had it. I was going to live. But now I may not. And the "voice" - the inner knowing that has served me so well in identifying my cancer and its recurrences is now playing with me. I can "get" clearly that I will beat it this time and forever. But then, this other quiet little voice (thought) pipes up into my left ear, "You have six months." Six months to what, you little shit?!! That's what I say today, that is. But for the past couple of weeks, sitting with this thought that could be true has created the puzzlement in my mind as I wrestle with the conflicting messages. Clarity and my subsequent reality - life or death, may come, I suspect from deciding whom I want to put my faith in. and that should be a "no-brainer". I wish it were that easy. I wish my faith was formidable. But since it is not, I hedge my bets purporting that in any event it is time to untangle the tangibles and intangibles in my life, to clear the clutter and to free up space and energy for the changes another round of treatment may bring to my life. I feel weighted down, encumbered by "stuff ".

So I am angry today- really pissed. I did get a chance to express that this week. Before, I was too busy trying to be strong. Now I can shout it. I am pissed! Why this? Why me? Haven't I been good, loving, worked hard enough? Don't I have too many gifts to share for God to squander them? I am here to break the cycle of dysfunction in my family, I have been told. Will my dying be the final vehicle that achieves this? Better be, because I don't think we are there yet. And what about my husband, doesn't he deserve happiness? Oh, dear friends, I am angry now.

Nuts and bolts: We leave for CTCA on 6/10 and a visit to my newly married son in Ohio along the way. My mastectomy surgery date has thankfully fallen on Tuesday, June 19th, a day when Marlene, the Reiki Master, will be at the hospital with her tuning forks. I introduced them to her, but she went on to take more training than I have. She will be a valuable member of my team. Speaking of my team, it includes the participants from the Quantum Touch class I facilitated recently. I have had 5 sessions this week, thanks to them. I am fully prepared for a negative pathology report after the surgery. Already, the discomfort I have been feeling is almost gone. We will continue this week as we can.

I welcome you to be on my team as well. Picture me well and whole. Pray that God will speed my healing while picturing me healthy and whole. Pray that the lymph node dissection will be minimal and my right arm will remain fully functional without excessive edema. Pray that my faith will become formidable.

Ethlyne

June 17 2007 - Pre-op Update

Dear Friends,

When I got here, I found that the plan was to do a lymph node dissection without a mastectomy, but when I told the surgeon (who is a truly exceptional human being and unusual for really listening and reflecting back to be sure he heard correctly), that I was feeling an ache in my breast, he went down to review the films himself. I did not ask which film he reviewed, but he returned describing a suspicious area deep in the breast. He then offered an MRI guided biopsy as an option. I then told him how my inner knowing had been right 3 times this far and it was telling me I should have the mastectomy. He then responded, to my relief, "That would be my preference." Up to that point I was really unclear as to what he thought was best. I also think that a biopsy of the left side area that is swollen might be good. A negative result would ease my mind. Thus far they are talking estrogen ablation (drugs that reduce estrogen effects) instead of chemo, but the pathology report will be a big factor in the decision process. The tumor board (an interdisciplinary group) will meet to look at the total picture. I am amazed at how many patients here have different treatment plans despite seemingly identical cancers and situations. Apparently there are more subtle factors they consider as well. I will learn more after they meet.

Following my appontments with my surgeon and my oncologist, I met with my naturopathic doctor, my mind/body therapist and the nutritionist. (I am participating in the Vit D study here related to breast cancer.) My nutritional plan has been modified for the week prior to surgery as well as post-op.

Thank you for your loving support. It has carried me thus far, and I know through Tuesday. Today I will start grounding myself and preparing for the surgical process as i feel a little unsettled. I plan to listen to Masuro Emoto's classical music that he has identified as supporting the body - especially the immune system. The week before I left we experimented with doing Quantum Touch with and without it. We all agreed it made a difference in the perceived energy flow. Tomorrow I will get a surgery prep guided imagery CD to listen to before surgery.

Ethlyne

July 10 2007 - Lifted, then Dropped. But Joy is Back

Dear Friends,

For those who have been watching, please forgive my long absence. I will catch you up at this writing. I can't believe how time has flown by!

I had a modified radical mastectomy and an axillary lymph node dissection in Illinois on June 19th. I had a tremendous support team, not the least of which was the many who spent time in prayer. I can't help but feel a little "corny" saying this, but I truly felt "lifted" when I went into surgery. Charlie was very worried, but I was in total peace. Marlene, the Reiki master who works with patients at CTCA used the tuning forks and worked with me both before and after surgery. My beloved chaplain was present. My operative day was Tuesday and my surgeon had said to expect to be discharged on Friday. By 7 am the following day, a switch flipped within me. The nausea was gone and I asked to wash my face and for my lipstick I soon regretted that as I was quickly told I was doing so well I had to be discharged (to the hotel across the street). Some more sleep would have been good. But the nurse obligingly took most of her shift to do my discharge paperwork, so I got to catch a few "Z's" before leaving. I was truly doing well. My joy was back and reflected by all I interacted with. A frequent observation when I feel truly joyful is that I have a glow. I heard that all the rest of the week. I spent the next day before our leaving catching up with friends and some e-mail, and seeing the staff for post-op follow-up before we headed off for a leisurely trip home. We took 3 days, stopping or an unplanned visit with friends in Louisville. What a great visit! We "antiqued" and I found a few treasures - one a shelf to display my jewelry for sale on.

We arrived home on Sunday evening. I made a necklace on Monday morning - a design that had been percolating while we drove home for the friend we visited, but I began to feel uneasy in the afternoon, feeling chilled a couple of times. We had sent photos of my untroubled incision and drain sites early that morning, but by 9:30 pm, there was redness around my drain site and my temp was rising. Long story short, by the time Charlie could get back from the drug store with the antibiotic the surgeon prescribed for what appeared to be an early infection, I needed the squad to be transported to the hospital. I was there 6 days, 4 of which I wanted no TV, phone, or visitors. I had a drug resistant staph infection (MRSA) and felt like "one sick cookie" as I told the doctor when he presented the option of home IV's. I truly felt in danger of crashing with sepsis - an overwhelming and life threatening infection. I am most grateful for the sensitive care provided by both the doctors and the nursing staff at Lynchburg General.

It has been a difficult time since then. I remain on daily IV therapy. Until there was no drainage, the precautions needed to not transmit MRSA to Charlie or others in the household were many. In my weakened state, unable to use my right arm in order to cut down any fluid production, everything fell on Charlie. What a champ he is! And then the pathology report came in, confirming that what I hoped was a new cancer on my right side was the spread from left to right, with 6 of 22 lymph nodes positive for disease and as my surgeon said, "truly metastatic disease". This moved me into Stage 4 disease which is considered incurable. I got this news, which I knew, but chose not to deal with, on Friday. (This is Tuesday) My local oncologist gravely gave me this confirmation, but reiterated his opinion of two years ago that we now can consider breast cancer a chronic disease and that with hormone therapy, I may have ten years. He explained that treatment depends on the goal - in my case either to manage the disease, or the cure. In my case, he feels the hormone therapy is best. Two years ago cure was still considered a reasonable goal in my mind. But now, from all sources, Stage 4 is not. Nonetheless, I have surmised that chemo will be offered me when I return to CTCA given chemo being put on my schedule. How often I have heard stories there of others being told they had 3 months at home to being alive and thriving years later! Regardless of the many similar accountings, I am not sure chemo is right for me, but I must wait and hear the oncologist out. So I now wait. Wait to become stronger. Wait for more the second opinion. And wait for the fatigue and malaise to abate. Fatigue and feeling depleted filled with me with tears yesterday. But today my joy is back. It is good to be backƒ

Ethlyne

January 27, 2008 - I finally learn to develop systems and follow them

Dear Friends,

This is the year, I say, in which I finally learn to develop systems and follow them, to handle paper as little as possible - to not procrastinate in other words! How am I doing? Better, I must say, but still a work in progress. Because of a busy week ahead, I am working today at my desk and admittedly procrastinating by writing to you. Actually, to be fair to myself, you stimulated this writing because I checked the numbers today to see if anyone was checking in with me. And because many were, I am breaking my silence.

Why haven't I written of late?- mostly because I am bored with myself and self conscious about my sharing. And last month I seemed to get my dealing with cancer confused with News and Muses, creating "I am Excited!" instead. Today I am disgruntled over my apparent inability to "walk my talk", having eaten cookies (a lot of cookies!) and cooked food this week, especially the kind that slows me down and zaps my energy - wheat, sugar and cheese, not to mention meat, white potatoes and gravy! No matter that I did manage to make good headway on many things left undone over the months of recovery from surgery and MRSA. No matter that I have been good about exercising. That little "Critic" voice is berating me for all that was not done right. I have to admit that food is my hardest issue despite being so important, in my mind, to my survival. Sometimes I would rather eat my comfort foods than live a long life. Sad, isn't it? No