Update on Consultation

This blog is mainly an update from our visit to Johns Hopkins since that was the big trip scheduled last week. I appreciate everyone's well wishes; it's always difficult to go to a new setting, meet new people and discuss your situation. All went well.

Johns Hopkins - As I mentioned, we've been looking for other recommendations for additional therapies by a major cancer center. Johns Hopkins offered that opportunity through their interdisciplinary team approach to provide a 1-day consultation. On Tuesday, I and eight or so other candidates met at the large Johns Hopkins hospital and outpatient center; it's like a campus set amidst Baltimore. After our CT scans, we all meet in a conference room and were given a general briefing. The idea of the effort is that one doesn't always get the convergence of many disciplines about one's cancer. This approach offers perhaps more information at once and less conflicting viewpoints. On staff is a nutritionist, pain management specialist, surgeon, radiologist, and oncologist. They view the relationship with us patients as one that can continue and as a collaborative approach with our home base treatment centers. They invite followup questions and consultation.

Each patient is given an office to wait in and then the different specialists make their rounds. I met with the nutritionist and she provided a list of guidelines and some recipes. A research scientist asked for participation in a research effort and so we had some paperwork on family and medical history to provide there. The pain management specialist reviewed my pain medication and said that we seem to have a good approach. Then I seemed to be at the end of the line because John and I waited from 1:30 to 4:30 before the radiologist and oncologist met with us. (Fortunately I was reading the latest Steig Larson suspense novel so it wasn't so bad!)

Basically the bottom line from the radiologist and oncologist was nothing too new or innovative. The radiologist recommended that we add different chemo drugs to the gemzar to get a bigger impact on the tumor. Additional suggestions included the addition of curcumin (clinical trial), stereotactical radiation (go with experienced providers) and exercise. I had a list of questions that Amy, my naturopath, had such as 1) Do they know of Dr. Lentz's work on plasmaphoresis - washing plasma of the 2 blocking factors that prevent TNF from acting to kill cancer cells? 2) Am I a candidate form hyperthermia and what do they know of that therapy? 3) Can they refer me to chemical sensitivity testing if recommending additional chemo drugs? 4) what do they know of immunotherapy? The oncologist was very open and interested in discussing. Unfortunately, I should have had Amy there because I don't have a lot of knowedge to have the discussion. The oncologist was not aware of Dr. Lentz's work but was with plasmaphoresis; didn't know if I was a candidate for hyperthermia, but was aware of Joan Bull's work; wasn't opposed to referral for chemical sensitivity testing, but you need enough cells to test and it's expensive; and had done work on immunotherapy and was interested in discussing.

They will provide a report to us and our providers and the results may be more concise than what I convey here.

Otherwise, we enjoyed our trip to Baltimore. We had been there before - John happens to be a long time Orioles fan (we teased him that that's why he wanted to come to JH!). Unfortunately the Orioles were out of town. I wanted to go back to the National Aquarium and be in seawater, watch fish and jelly fish. However, that excursion was more like watching thousands of bobbing heads running from one view post to the next yelling excitingly about what they saw and they saw it first! Not the relaxing ebb and flow of seawater! We met up with Annie, Molly's friend, who just moved there a month ago while her husband, Travis, attends art school. We went to a great juice shop, Liquid Earth, where I had some carrot and greens juice and a wonderful miso soup with hijiki. Annie just started working a gormet, farm-to-table restaurant called Woodberry Kitchen. She made reservations for us - the dinner was excellent and is exciting to know where every morsel of food comes from and is local.

Featured Friend

One of my oldest (in years of knowing) and dearest friend is Beth McKenzie. We became fast friends our sophomore year in high school and have had many adventures together. That spontaneous laugh we have over a day's event or experience is the imprint of my bond to Beth. Interestingly, we've not lived in the same town since high school - I went to MSU; she was a UM brat. Then I eventually settled in Missoula and she lives in Bozeman (still a Griz fan of course!).

She's been one of my biggest cheerleaders on the cancer front - getting me resource material - the Suzanne Somers book on doctors who cure cancer was great help.

She's also provided me with two "daughters", Whitney and Madison, whom I love dearly and introduced me to her great network of friends. Beth hosts an annual "ladies weekend" at her cabin on Echo Lake and there I've gotten to know and enjoy Nina, Kate, Kim, Angie, Flip, and Vicki.

Thanks Beth - you're the best!!

Comments? I continue to roll on thru enjoyable movies - thanks! Some good ones - Couples Retreat, Soapdish, Bowfinger, Bagdad Cafe, The Answer Man, The Ugly Truth....and more.

Consultations

I realize I'm jumping around a bit with my blog. This issue I thought I would catch you up with some of the consultations we've done outside of Missoula because this Sunday, John and I leave for Baltimore for an assessment at Johns Hopkins so next week I'll have more news there. So heading back thru time....

Johns Hopkins - We've been looking for other recommendations by a major cancer center of additional therapies (abeit conventional) in addition to the chemotherapy of Gemzar. Initially, because of a personal contact at MD Anderson, we tried there and found that they don't give second opinions, but if you want to become a patient (go live there), they will take you in. Then John heard thru a friend that a Missoula person with a similar diagnosis as mine (non removable tumor) that they had used this assessment program at Johns Hopkins. This is the Pancreatic Multidisciplinary Clinic where an ocologist, radiologist and other specialists review your case along with 7-8 patients (that we'll meet) for that week. My records have been sent off. On Tuesday, I'll have an addition CT scan, blood work and physical that morning. Then in the afternoon, we'll meet with one of the team to get the interdisciplinary assessment and recommendations.

Dr. Nesreen Medina, ND - Three weeks ago, we traveled to Seattle where I consulted with Dr. Medina about possible stressors to my body along with recommendations/validation of the supplements I'm taking and foods that work for me. She performs a method of kinesiology called Autonomic Response Testing (ART) to provide an energetic impression of my response to various stressors including infections, exposures and foods. The results were that heavy metals are stressors (results of amalgams - teeth fillings). I also came away with validation on the supplements that I'm taking and the addition of a few. As for food, the ones for me to avoid are beef, dairy, soy, corn and (boo hoo!) chocolate!! The heavy metal result is not surprising to me since I'd been tested 5-6 years ago and had a high mercury reading. At the time, I went thru a chelation therapy, but was not retested. As I shared this with Amy, she counseled me on "one thing at a time"...that while we can address this, doing chelation therapy requires additional work by my body. Overall, this visit helped me feel more confident and comfortable with my foods and supplements.

Dr. Ralph Moss, Ph.D. - My naturopath, Dr. Amy Haynes, has been my leading researcher and push behind complementary therapies for my disease. There is so much out there, how do you know where to begin? She suggested that we consult with Dr. Moss. Dr. Moss is a featured interview in Suzanne Somers book: Knockout - Interviews with Doctors Who are Curing Cancer. He is a highly respected science writer and critic of conventional cancer treatment who has written several books. He continues to be on the forefront in evaluating conventional and alternative treatments. In becoming a client, we received his report which includes background in my type of cancer, evaluations of cancer centers and doctors world-wide that offer non--conventional, complementary therapies and evaluations of various treatments and therapies. Amy, John and I had a teleconference with Dr. Moss in July, and he gave us 5-6 possibilities along with answers to our questions about others. Of those, we are still evaluating 1) a treatment in Germany by a Dr. Lentz; 2) whole body hyperthermia - a clinical trial by a Dr. Joan Bull, University of Texas; 3) the use of Iscador (mistletoe) thru injections - we are doing this one. Amy got the medicine from Germany. Many Europeans are given this complementary treatment but it is not available in the U.S.; and a few others. More to come from our research here.

Virginia Mason - Many will remember our initial trip to Virginia Mason in Seattle. Several contacts had been thru this treatment program. We also got additional information about my cancer thru a laparoscopy procedure. The doctor recommended that I follow their protocol which included some additional, harsher chemo drugs and then come out there after the wedding for the 8-week program. I decided that I wanted more quality of life and the option to pursue other complementary therapies than this stronger, brute force chemo approach.

Featured Friend - The "Forest Service Family" - I've realized through my challenge what strong bonds exist in the organization. Who would have thought that just because we don't live together in a small, rural community and nowadays interact via teleconference, email and video conference that we could develop such caring, heart-felt bonds?

I'd like to thank those of you who have continued to send a post-card, email, card, or note letting me know that you're thinking of me and thanks for sharing a bit of your life. (Please excuse if I miss some)....but thanks to:

Sue Heald, Lois Olsen, Janet Bean Dochnahl, Peri Suenram, Jane Weber, Karen Mollander, Joni Packard, Ann Carlson, Cathy Stewart, Merideth Webster, Gail Swanson, Bev Yelczyn, the Dakota Prairie crew, the Flathead Leadership Team, Paul Bradford and Kootenai National Forest, Bev Young, Janet Kekich, Loretta Chambers, Kathy McAllister, Barb Plattes, Olleke Rappe-Daniels, Sherry Munther, the Timchaks, Sharon Friedman, Lis Novak, Chris Ryan, Chris Tootell, Tom Rhode, Mary Manning, Jolyn Wiggins, Linh Hoang, Beth Hahn, Robin Strathy, Rosa Nygaard, Ann RhysSikora, Janet Grove, Linda Pietarienan

Comments? Please send me courage and prayers on Tuesday. These consultations, particularly conventional, are plunges into a stark, statistical reality and can be very discouraging. Love you all -- Kerry

Healing Systems

Healing Systems - As my naturopath, Amy Haynes, mentioned to me, the difficulty of my particular cancer is that it is systematic, thus the importance of treating the whole body - treating the system. Several therapies that I've been doing since May have been hydrotherapy and buteyko breathing. Here's a little info about each:

Hydrotherapy - is an age old remedy that engages the autonomic nervous system and the two branches: the sympathetic and the parasympathetic. The job of the sympathetic nervous system is to help your body deal with stress...the fight or flight response. The parasympathetic system repairs and rebuilds; responsible for digestion and its efficiency.

This therapy involves applying hot and cold packs on the core of my body and using electric currents to stimulate as well. I lay down under a warm wool blanket and a hot, wet towel is applied to my chest and abdomen for 5 minutes. Then, the fun starts when Dr. Sarah Lane, my other naturopath, replaces the warm with an icy, cold wet towel to what she terms, "a jump in Flathead Lake". I have that on for 15 minutes with the challenge of my body working to heat it up. Over time, I'm getting better at it. Meanwhile I have electrodes just below my shoulder blades on my back for electric stimulation. Then, the cold towel (warmed up hopefully) is removed and the electrodes are moved to stimulate the parasympathetic system which is front and back near my stomach for another 15 minutes. Then I flip over for a repeat of the hot and cold on my back.

I do 2-3 of these treatments a week with the goal of getting at least 50 treatments. Directly, they do stimulate my appetite...by the end, I have something I'm yearning to eat.

Buteyko Breathing - The theory and process was developed by a Russian and thus the name. It actually involves reduced breathing rather than one might think of a breathing technique. The purpose of breathing is to provide the body with sufficient oxygen and to remove excess carbon dioxide. When you run fast for any length of time, it would be appropriate to breathe heavily and quickly. Sitting in a chair, breathing heavily and deeply would be excessive or hyperventilation, because you don't need that much air to move in and out of your body when you are sitting.

The purpose is to regulate or balance the amount of CO2 and oxygen in your body. With too much oxygen, the oxygen tends to bind tighter to hemoglobin and is then less available to tissues. So the exercise that I do each day, helps me monitor my level. When I first started, I could hold my breath (controlled pauses) for about 11- 18 seconds. The goal is to be around 40 seconds and averaging above 35-second holds begins to affect your system and level of energy. In between the controlled pause tests, I practice reduced breathing for at least 5 minutes and one practice takes about 30 minutes. It's also great for meditation! I now average 36-42 seconds.

Featured Friend - As I get my pictures lined up, thought it would be nice to share some of my wonderful friendships and the people who keep me going! No order and certainly won't cover all of you who enter my thoughts and provide loving support!

Kathy P - She's my instigator in the boot camp and as I've realized, the catalyst in many of my ventures! My next door neighbor - we've taken our families to Ireland and England together, enjoyed wine country for our 25th wedding aniversaries, spent wonderful time in Paris and all the museums, survived the Smith River float with two 16-year olds, and took a tour of Russia in 2005. Kathy is always checking in....a great texter! Thanks Kathy!

Comments? Do you have any favorite "smoothie" or "juicing" recipe. I followed Olleke's lead and bought a vita-mixer and now have the challenge of adding this to my diet!

Update for August 6, 2010

My Health Perspective - Last week I provided the oncologist's view of my health situation. My perspective is broader, less limited and more optimistic. I believe the body as part of the soul has an itelligence and with that intelligence, has the power to heal. Knowledge, communication, and intuition are all key components to linking mind, spirit, body and facilitating the healing process. The body is not like a structure such as a car - that we mechanically keep running, fix parts and treat mechanically. As a living , intelligent system - the body has the system in place to heal.

Thus, my challenge is to become more trusting and communicating with my body to heal; to work with the tools, supplements, including chemotherapy and bless their contributions. In future blogs, I hope to discuss those therapies that have helped me.

Rejuvenation - One of the things that struck me in this health journey was noticing people's, animal's, plant's life force - the energy! Such a blessed thing to have!

One of the efforts that has helped me with strengthening and regaining energy has be getting back to Cindy Hart's Adventure Boot Camp. My wonderful friend and neighbor, Kathy Pritchard, asked me to try it back in September 2008 and I became a fan ever since.

The picture on the blog is of Cindy and some of the other converts: Molly (daughter-in-law), Pat (son), me and John. We're part of the 6:30am crew. I can fit my regime well with those who go at their ability. I can't thank Cindy enough for hanging in there with me, encouraging and accepting of my need for this energy boost!

PS. Wedding Photos - Some have asked about seeing Pat and Molly's May 29 wedding photos. They can be viewed on www.greendoorphotography.com under weddings and Pat and Molly Boyle. With 625 photos - 1st part are prep; middle the wedding; and latter, the reception and dancing.

Comments/thoughts on health perspectives or rejuvenation??