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.