Writing in the bolg when I'm feeling rested and well is a good idea in general. On the other hand letting people know I don't always feel that way has its merit as well. The last week has been a challenging one with more symptoms and side effects. By about 3:30 each afternoon I've felt fatigued. The flushing episodes have been a bit more frequent and my blood sugar has dipped down in numbers enough to cause some hypoglycemic episodes. I've been trying to stay hydrated in the face of 3-4 days of diarrhea. What changed to cause this increase in symptoms you might ask. Well certainly my diet has not been as steller as it was the 3 weeks preceding this week. I'm sure that has had an affect. However, I am trying not to lose weight and the TQI diet was doing a great job of helping me to lose weight. I'm back to maintaining the 140 lb's where I've been since August. I actually think stress and hours worked might be the biggest factor in not feeling well. I'm finding it very difficult to manage exercise, meditation, eating all organic, fresh foods that need preparation, work (40 hours), household chores, yard work and just all life activities. I'm sure lots of suggestions and questions might come to mind; have I tried this and thought about that.  I'm changing and altering and working on things all the time and it is a delicate balance. It will all work out. :-)

Peter and I will leave tomorrow for Portland. I met a wonderful woman who is in a support group I'm going to start going to. She has had NET/Carciniod tumors for 14 years. We're going to meet with her Sat in Federal Way on our way to Portland. She has the same doctor with GH and is on SAA LAR 30 (Octreotide) every 28 day injections just like me. She has visited the top NET specialist in Germany. She let me know the German specialist, Dr. Richard Baum, will be speaking at a conference in Vancouver BC June 9th. I have registered for the session and will attend. My first Support Group Meeting will be June 22 in Tukwila. After the Monday 6/3 appointment with Pommier in Portland at 9 we'll be coming straight back to Seattle where I have a meeting at 5 in W. Seattle.

My helper, a nurse at GH named Catie, from Dr. Feldman's office let know she had finally been able to acquire the notes from Dr. Woltering in NOLA. She put a copy in the mail to me but I have yet to receive it. Catie is great to work with. I was hoping to have the notes to take to Portland. Either way I should get them soon and fax or email them to Pommier. After I meet with Pommier I'll be putting together all the information and deciding whether I think surgery is still the best option. There are at least 4 different ways I could go and Dr.'s that support the different alternatives. Since there isn't a lot of data on these treatment options (because this is so rare) decisions for patients are more complicated. With breast cancer and some other more common types I think it is easier to determine what path you should take forward. I might be wrong about that but at least there have been clinical trials and large studies.

This Wednesday I get to spend my moms birthday with her and we're going through old family slides to organize them into books for different family members. We really love looking at the old pictures. There are a lot of cute ones of my sister and I when we were little that I've never seen before. It is fun to see my mom, grandma and grandpa's, my brother and Auntie over the years. My mom and dad will then spend the night and take me to the biopsy appointments at 7 the next morning. Both the thyroid and bone biopsy will be done Thursday and we'll return home in the late afternoon. I'll be put in deep sedation for the bone biopsy only local for the thyroid.

Last but not least my son and daughter in law Lindsey are only 2 weeks away from the due date of their new baby. My daughter and son in law found out this week she will be having a girl in October. I hope to spend time with my wonderful grandson Kimani in the weeks to come. Last Saturday he helped Peter and I plant a new weeping cherry tree in our yard. He was a big help with his shovel and watering can! :-) He is such a special boy and I just adore him.

As always thank you for caring about me and being interested in how I'm doing.

Portland surgery possible and other news

In the last week, since my previous post, I have managed to send all my medical records including lab tests, scans, procedures, a CD and all results from Jan. 2012 to present, to the Dr. Pommier team in Portland. He is with the Oregon Health Sciences University (OHSU) Hospital. I have scheduled a consultation appointment for June 3 and recieved the GH referral for the appointment. I know that Pommier and the NOLA NET Clinic group are often of the same opinion when it comes to surgery in cases similar to mine; basically that surgery is possible and preferred. They regularly consult each other. As Dr. Feldman, my GH doc said, Pommier has probably been doing this work even longer than Wang (NOLA surgeon). The more I've learned about the extent of the surgery and the recovery period, the more having it done close to home appeals to me. It may be a week in the hospital followed by a week where I could not fly (hotel in NOLA) but could be driven home from Portland if done here. Recovering for a week in a hotel in NOLA ($$$) then needing to fly first class ($$$) to have enough room and a possible plane change/lay over isn't appealing. Recovering in my own bed with Peter and my parents coming up to help take care of me during the day, on the other hand sounds relaxing and even fun. In Portland, Peter could be joined by friends and family in his support of me. He would only need to take a few days off work compared to 2 weeks or more if we were in NOLA. My mom and dad would fly to NOLA ($$$) but it would be great to save all of us the airfare and hotel costs so that we could spend it on a cruise after my 6-8 week recovery. :-) We've decided somewhere warm this time would be best (we last cruised to Alaska).

Speaking of warm, Peter and I were pleased to hear Dr. Feldman warming up to the idea of surgery by saying last week he now has a bias more toward surgery than the other treatment options of radiation and chemo.  Dr. Back, the SCCA doc who referred us to Woltering in NOLA is of the same good opinion toward surgery now too. Feldman still believes no one in Seattle would do the surgery. The liver burden is considered inoperable by GH, VMMC and SCCA surgeons. We are confident that Dr. Pommier will agree with Woltering and Wang and want to do the surgery.

It has been surprising and a bit disappointing that we have been unable to attain consultation notes or written information from the NOLA team since our visit there 3 weeks ago. Despite my best efforts (calls, fax, email) we (including Dr. Back and Dr. Feldman) have received nothing in writing about the results and conclusions from the consultation or the results of the procedure performed; Endoscopy Ultrasound (EUS). This information would be necessary for us to schedule surgery with them and to see if GH would approve coverage. I have been told by Financial Services at GH that the entire surgery and hospital stay will be covered as long as the surgery is deemed medically necessary and not experimental or exploratory. The Portland office of Pommier has assured me that following our appointment June 3 they will send the consultation notes directly to us, Dr. Feldman and Financial Services laying the ground work for scheduling the date for surgery and coverage approval. We may even be able to schedule the surgery date at the end of the June 3 appointment. Sometimes docs may forget to copy the patient on the consultation notes, complete with their opinion on steps to be taken for future action. I think it is rare however, for the referring oncologists (Feldman and Back) not to be able to get reports from a consultation across the country. Since GH presumably paid or will pay for the NOLA office visit and procedure they certainly expect the results will be sent formally to the doctor in charge of my case here. This was another motivating factor in choosing to check out Dr. Pommier and so far all of my contact with them has been great and professional.

One other factor in choosing a close to home location for surgery is that I would like to avoid being out of state on the due date (June 30) of our next grandchild. I will probably take the first date available for surgery if all goes well in Portland. Thaddeus and Lindsey (son and daughter-in-law)will have her mother here for a week for support around the birth. It would be great to have the surgery over with and be able to hold the new baby right away. Or maybe it will be 2 weeks after the birth and I'll get just as much time with them either way and could also help take care of Kimani, now 3 and a half,  during the birth. It will be so much fun to find out at birth if it is a boy or a girl. Jessica and Q (daughter and husband) due Oct. 15th will find out the sex of the baby on May 28th. She looked so cute last night at my birthday dinner with her little "baby bump".

It was a wonderful dinner and Peter did most of the arranging. He really is an event planner on top of so many other special talents. I had a great time and we'll have to post some pictures. Kimani was in fine form performing for us on the drum and discussing his train set activities. I love the CDSA benefit that everyone gets their b-day off and paid. Back at work full time today I'm balancing the 2 jobs; one being managing the medical plan.

Coming up over the next week will be the biopsy of the thyroid nodules and bone spots. It is unlikely that the thyroid is cancer and if it is would be an entirely different type of rare cancer not related to the NET's. The thyroid can be removed easily. It is not the mysterious primary we have been searching for; believe me I asked about that. The bone spot may be arthritis or something else. If it is NET metastasized to the bone it is a very tiny spot, will be very slow growing and will be kept from growing or spreading by the Octreotide LAR 30 that is keeping the liver tumors from growing. Dr. Feldman thinks the primary location is also of no concern now. Anywhere in the body that NET's are will be managed exactly how the tumors in the liver are managed and will replicate their activity precisely. The only life threatening area is the liver and we're doing everything we can to move forward quickly toward debulking (lowering the tumor burden) in the liver. The liver functions in labs remain normal and through diet I am helping my liver. I'm giving the liver a break from having to work hard by only eating the things that are easiest for livers to process. I'm staying away from known and suspected toxins that the liver ends up having to break down. Acidic waste, excess Omega 6 and protein, has to be broken down in the liver which can take a toll on the whole body and health of the immune system. Acidic waste being sent out to the kidney or dumped into the blood stream by the liver is not ideal. I'm eating tons of spinach and kale, berries, nuts, avocados, coconut milk and tahini sauce just to mention a few of my favorites. Two thirds veggies and fruit to one third protein and grains is the easy way to think about it but within that rule there is still good and bad protein and good and bad grains. I'm being very good with only a small break here and there for celebrations like my b-day yesterday.

Speaking of my birthday and gifts I just want to say thank you again for the number of "thinking of you" cards, gifts and well wishes I am receiving on a regular daily basis. The emails, the phone calls, the cards, flowers, candles, angels, books, articles, food and prayers are just amazing. Many individuals and groups are praying and I am positive it is working. For one thing I feel great and have virtually (almost) none of the symptoms others with this affliction are experiencing. It is a miracle that I'm fighting this with so much energy and enthusiasm. I know walking, qigong and time with people I love and who make me laugh helps immensely. When you put it all together I am just so grateful for this life I have and every day in it and everyone in it. My co-workers at CDSA have been wonderful and made me a fruit only birthday cake this week, the board too is so suportive.  Thanks again to everyone for the on-going support.


NET - A simple definition from the Ochsner Medical Center's Neuroendocrine Tumor (NET) Clinic:

Neuroendocrine tumors (NET) are rare, slow-growing, hormone-producing tumors that affect neuroedocrine cells present throughout the nervous and endocrine systems. Most of the time these tumors are difficult to detect and diagnosis can be delayed for years. Once diagnosed, patients face numerous barriers for care as there remains much to be learned about these rare tumors.

The NET innovation fund was established to help support the purchase of novel equipment, the development of radio-therapeutics and other treatment options at the NET clinic in NOLA. The fund will also support educational programs that would help to raise awareness and educate the physicians and the general public about these rare tumors and treatment options. The doctors I'm working with report a rise in the incidence of NET diagnosis.

Results from 5/14:

Stomach and lymph node biopsy's negative

Pelvic Ultrasound not showing anything

Thyroid Ultrasound shows nodule; could be a common benign one, may biopsy just to be sure but is not related to NET's in liver (Dr. Feldman's opinion)

Bone scan - Dr. Feldman says it only showed very small area's of density, report did say consistent with bone malignancy. Not sure what action we will take if any. It is still a concern to me. Dr.F said the liver is really the main concern we should focus on.

Other news:

Spoke with the NOLA team, Dr. Woltering and the surgeon Dr. Wang along with other staff yesterday. They proposed dates in June for surgery. A report is needed from them for Group Health describing the surgery. If it is deemed necessary by GH they will pay completely for the hospital staff and surgery. Either Dr. Wang or Woltering needs to send Dr. Feldman a report on my visit describing their opinion moving forward (that they want to do surgery). I'm not sure how long that will take.

I have an appointment with Dr. Feldman next week to discuss next steps.

Continuing with TQI diet. Spoke with NOLA nutritionist yesterday. May slightly alter diet.

Friday 5/10/13

The 2 biopsy's of the stomach and one of the lymph node done in NOLA were to report in a week which is today. Unfortunately no news yet. Maybe by mid-next week we'll know the results.  I was able to move next weeks bone scan earlier to Tuesday instead of Friday by doing it at Bellevue GH instead of Capital Hill. I hope everyone has a great Sunny week end.

"You must never confuse faith that you will prevail in the end - which you can never afford to lose-
with the discipline to confront the most brutal facts of your current reality, whatever they might be." James Stockdale

Returned yesterday afternoon 5/6 to 80 degree weather in Seattle. It had been only 50-60 in NOLA. The view of the mountains coming in was fantastic. I remembered my Grandma VanBuskirk, my mom's mom since she loved Mt Rainier and May 6th was her birthday.  My very good old friend Louise picked Peter and I up from the airport (and watered plants in our absence). Although it was a long day, getting up at 3 am to catch the plane with 1 lay over, I arrived with lots of energy and got busy with yard work, going through mail and having several work calls. I got to speak with our wonderful auditor for CDSA, Mary Joyce. It is always a pleasure to work with her. My extremely competent assistant at CDSA, Maile spent an hour filling me in on the finer details of what occurred in my absence. She is a joy to work with a huge blessing in my life.

Last night I went to the second in a 5 part series on a diet called "To Quiet Inflammation" TQI diet. The author of the method, 2 books and lecturer in class is Kathy Abascal; the book is called the Abascal Way. She resides on Vashon Island and happened to know my brother Ed and his family who live there. I began the elimination phase today. I am cutting out all sugar, dairy and wheat products and eating vegetables, fruit and protein (no red meat). It is 2/3 vegetables (especially leafy greens) and fruits to 1/3 protein and grains in 5 meals a day. No sugar substitutes (even stevia is removed) and no alcohol. No eating 2 hours before bed and no snacking. I really recommend the book as a prevention tool for avoiding cancer as well as a great way to build your immune system even if you don't follow the whole diet. I will be strengthening my immune system in preparation for the surgery I will have soon to remove as many of the tumors as possible in the liver. It is also a great way to eat for a fast, healthy, recovery period and during any treatment I may need after the surgery. As Dr. Wang, the surgeon, emphasized last week, we want as little stress to the body as possible so that the immune system will be very strong. This type of eating does not "stress" the body and organs including the liver but builds health while reducing inflammation. I also promised Dr. Wang I would be taking care of other kinds of stress in my life; things I worry about. Exercise, watching my work schedule, being joyful and talking to friends and family reduces anxiety. My mom has been there every day for me. My daughter checks in daily and my son keeps close tabs on how I'm doing and invites me to fun things like dance and drumming events where I can also enjoy my grandson Kimani. Peter continues to be ever present and available.

I expect to hear from Dr. Wang this week with prospective dates to schedule the surgery. I should also hear from Dr. Wolterings office with the results from the biopsy taken last Friday during the Ultrasound Endoscopy (EUS) procedure. EUS shows both ultrasound images and live video of the GI track. A flexible tube called an endoscope is used. At the end of the scope was a tiny camera and light. The scopes also contain a very small ultrasound device, which uses sound waves to create images and send them to the monitor where the video camera also transmits live images. The scope  had a needle at the end of it which was used to take a small sample of tissue for testing (a biopsy). A second type of needle was also used to take a sample of fluid. That was called a fine-needle aspiration (FNA). Both were done and those biopsies should result this week.

Also this week on Wednesday at 1 is my every 28 day injection of Octreotide. I begin the Cancer Lifeline Qigong class this week and continue with the Team Survivor North West (TSNW) yoga classes. Both of these are complimentary to cancer patients.

On another topic this Friday is my husband Peter's last performance of his Jazz group for the season. He leads the Peter Jamero Project and plays jazz keyboards. The show will be at Vino Bella's, a wine bar, in Issaquah on Front Street. I'll be there but will not be eating cheese and drinking wine. :-) I could have kale and grapes though. Everyone is invited.

Next week I start off Monday 5/13 with an ultrasound of the pelvis and thyroid at 4 pm followed by the TQI class. On Friday 5/17 I'll have a head to toe bone scan to make sure the cancer has not spread to the bones. I don't know how long these things will take to result. In a way, all of this is further preparation for the surgery since we still want to know where the primary cancer is. It is still deemed "unknown primary" since the pancreas was found to be clear in the EUS last week. If we know where the primary is at the time of surgery we would remove it if we could. Now that the thyroid is suspect (due to labs) we would remove all or part of it during surgery if we find it is cancerous. We can live without a thyroid! Even if we do not find a primary it is worth it to do the surgery since the liver function is the most life threatening issue moving forward.

Thanks again for all the support from many of you. I enjoy getting the emails that you've read and liked the blog. My good friend Shari in Hood River has been a caring presence through out this journey. Our birthdays are just 2 weeks apart and we're the same age. She'll turn 56 this Wednesday and 2 weeks later I'll be celebrating another year on this incredible journey of life on this beautiful planet earth. I know I'll be by the ocean somewhere to celebrate; being on and near the salt water has  been important to me through out my life. I was born in Hoquiam/Aberdeen, near the Olympic Peninsula and spent time as a child at the beach. After being in the south I realize how much I love Seattle and the NW; it is so beautiful here especially when the sun in shining.  For my birthday I may just watch the sunset at Lincoln Park in W. Seattle with my toes in the sand.  I'm sure we'll all enjoy the next week of sunshine.  Thanks again!

New Orleans (NOLA) Medical News

It's a rainy afternoon here in NOLA. We arrived Tuesday (4/30)  night after about 8 hours of flying, a lay over in Atlanta and a 2 hour time difference. We had a pleasant flight and found our hotel in the French Quarter easily. It's really cute.

Yesterday (5/1) I spent the day at Ochsner Kenner Hospital just outside of NOLA. We arrived with enough time to have breakfast in the cafeteria before the 8:30 appointment. My appointment was with:

 Dr. Eugene Woltering, MD, FACS
 The James D. Rives Professor of Surgery at LSU Health
 Chief - Section of Surgical Endocrinology
 Director of Surgical Research
Surgical Oncology
Endocrine Surgery


He let Peter and I know very early on in our meeting that he thought surgery was the next step for me. I had arrived at the meeting hoping surgery would be considered but never imagining we would start there. His aggressive approach was in stark contrast to my Seattle doctors more conservative but well meaning "wait and see" method.  He described a process where by we would remove as many of the tumors as possible and also try to remove the primary spot believed to be in the pancreas along with the gallbladder. Then we would watch the very small remaining tumors over the next many years (could be 10 or more). He expects me to live several rotations of the 10 year or more cycle (before they remove them again). He thought at least 3 cycles, bringing me to 85 years of age, although 4 cycles may not be out of the question .:-)  We would not need to address the tumors again with surgery until they grew large again. These are very slow growing tumors and I probably have had mine for over a decade for them to get to their current size.
Dr. Woltering and his team let me know that I would " die with this disease in me but not of it" and that it can be managed just as diabetes or other long term chronic conditions are.

 To get busy on this road to longevity he immediately ordered up a variety of blood tests to be done at 2 different labs in the hospital that day. I had already sent him dozens of lab test results and all procedures done since October 2012 when the first MRI showed tumors and the biopsy resulted malignant. He even had pieces of tissue from the biopsy. He had ordered many labs and several procedures to be done in Seattle prior to my trip to NOLA. As everything resulted we sent it on to him so he had quiet a few pieces of the puzzle to put in place. Two of the last things to result and be sent to him were the CT scan of the abdomen which resulted Friday of last week and the Octreotide scan which resulted Saturday. I received these on the "my Group Health" on-line system. The CT scan report indicated I may have masses in several other parts of the body while the Octreotide scan reported that the tumors had grown. It was discouraging and difficult news to say the least. After an initial reaction of concern I moved into the place of even more determination to beat this. If I need to be even more aggressive then I will I thought. I'll be powerful, positive and loving and fight this at the same time. I'll follow all western medical leads with the top doctors in the country.  I'll keep my spirits up, strongly being myself fully which includes my connection to spirit. I've begun a wonderful Qigong practice, am walking and am taking a cool class on the TQI diet (To Quiet Inflammation), I'm looking into a retreat in Sedona. I'm staying connected to the many who continue to love and support me during this process which brings me lots of good energy. My parents and kids have been always present.

Prayer, energy and love began flowing in response to the "bad news" as I made the shift to hopefulness and knowing I was going to be OK. My husband,  family, friends and co-workers contributed greatly to this turn around. Well wishes poured in from all over the country when a new group I'd met joined in.

 I went on a wonderful healing trip to Brazil in January to see John of God (google him for more information). A group of new friends I met, led by my room mate there, decided to pray for me and for my NOLA visit the night before my appointment at 9 pm. Many individuals chimed in by email to say they were participating. It was so powerful and I really felt the love. The appointment was successful and far exceeded my hopes for finding the right team. One sign that the prayer worked was that during my appointment the doctors wanted to schedule a procedure, which requires deep sedation, to find the primary spot of the cancer (the liver metastases is secondary). It was unlikely that we could schedule the procedure with such short notice since many people had to be pulled together to make it happen and the appointment calendar was full. But a cancelation for Friday morning occurred opening up a spot for me and everyone became available including the anesthesiologist.

I got to meet with the anesthesiologist (for the Friday procedure) and the surgeon that would perform the big surgery. Both were special people that I connected with.
The procedure on Friday (3/3) is an ultrasound endoscopy where a scope will be sent down the intestine to look at and biopsy anything that looks suspicious. We hope to locate the primary in the Pancreas before surgery so it could be removed. The doctors knowledge around this procedure, the ability to describe prevention measures and nuances of activities was impressive.

Dr Yi-Zarn Wang, the surgeon I met with who will perform the surgery to remove the tumors, had a special interest in stress and the immune system, which is an interest of mine as well. He is also a Professor of Surgery in the Division of Surgical Oncology at LSU Health. He  specialized in Neuroendocrine Surgery, Surgical Oncology and Minimum Invasive Surgery. He asked me to stop worrying and leave it to him. He assured me that he could do this surgery and that I really had nothing to worry about. Worry never helps, he said and told me of several studies done that show the effects on the immune system of stress. He particularly feels the immune system needs to be strong when fighting cancer is involved. I have been working consistently on faith and belief since the diagnosis and know that I have made good progress on strengthening my immune system.
There is a believe system I continue to choose each day and each moment based on love for self and others and connection to the divine spirit. It isn't something I check off my "to do" list or decide I've finished or accomplished. It is a life style change and a life long improvement, a blessing of the diagnosis.

Although part of that improvement includes diet I can't say I've stayed on it entirely here in NOLA. We've had lots of good southern style food here and it has been eaten with torrential rain coming down outside. Of course it is beautiful and sunny in Seattle while it is raining here but it hasn't dampened our spirit of fun and adventure. We toured the Garden District and famous cemetery today with my friend Becky's daughter who gives tours here. More eating happened after we changed out of soaked clothes. This Saturday and Sunday we're attending the Jazz Festival and it is supposed to be sunny both days. Then we'll be on our way back home to Seattle Monday morning.

Thank you again to all you active well wishers. As we arrive at the hospital tomorrow I'll know and feel the support I've got behind me, starting with Peter driving. I'm blessed in so many ways. Not the least of which is that I'm feeling great with very few and slight symptoms. We'll get up at 5 tomorrow (which is 3 Seattle time) to be there in time for the procedure to begin at 7. That's why we may need to still go out and have a nice desert this evening. :-)