commenting on my blog

A friend told me they couldn't post on my new blog. What I found out is that unless you have a gmail account you have to create a google profile (or one of the other profile options offered) which it will prompt you to do. Sorry this other step is required for you to comment on any of my blog posts. Once you set up a profile you will be able to comment. If you don't want to create a new profile and/or don't have gmail feel free to send me an email instead.

Updates:

Friday 4/12 will make an appointment for an Octreotide scan with Group Helath (GH) because it will have been 6 months since the first one by the time I go to the New Orleans appointment May 1.

Monday 4/15 8 am appointment with the Group Health lab at the central campus on Capital Hill to do a large series of blood tests to be sent to the Neuroendocrine Tumor (NET) Clinic in New Orleans prior to my May 1 appointment with specialist Dr. Woltering.

Wednesday 4/17 2 pm CT Scan of the abdomen at central in Radiation, also in prep for NET clinic appointment.

My first blog post

Dear family members and concerned friends, 

Many of you have asked me to start a blog to keep you informed of my medical condition. With my husband Peter's help, it appears now is the time to start it. This decision was spurred on by recently spending an hour on the phone updating one of the many wonderful well-wishers on my condition. 

I was diagnosed October 15, 2012 with Cancerous Pancreatic Neuroendocrine Tumors (PNET) in my liver.  

There have been many positive aspects of the diagnosis. I have brought my life back into balance and focused on my health. I was living a healthy life style; in fact I am/was quite healthy, as many of you know, but there was definitely room for a re-focus on my own spirit and wellness. Focusing on my healing and reviewing my daily choices has helped me return to yoga, dance, meditation, diet and a host of other health and wellness modalities; physical, mental and spiritual. It is such a blessing to be cared about by so many, to have family, friends, colleagues and newer acquaintances tell me they pray for me (including the congregations of several churches and spiritual communities). I believe in prayer, joy, positive energy and vitality in life.  I believe my strong will, attitude and desire to live play a decisive role in healing. I am manifesting wellness as you read this. :-) I am returning to perfect natural health and the root causes of my illness are being healed. 

 What really helped me to achieve this perspective and return to balance in my life was to have a 90 day short term disability leave from work December 2012 through February 2013. It allowed me to research my condition, meet with doctors, have tests and scans completed and get used to the treatment plan and side effects. It also allowed me to create a plan for how I could return to work and keep a healthy life balance upon returning in March. The CDSA team at work did a fabulous job supporting me during this time. 

History:

In 2007 blood tests revealed elevated liver functions. I had a biopsy of tumors found in an MRI and it resulted benign. I was told there was nothing to worry about and that these were quite common; no further action or tests were needed. . All further blood test did not show elevated liver functions.

During menopause in 2011-2012 I had symptoms including hot flashes that masked the beginning symptoms of cancerous tumors growing in my liver. As is true for many of us I also had periods of stress throughout this time and fluctuations in eating habits, exercise routines and weight loss. In Jan 2012 an odd symptom began and was a gift for helping me pursue my illness before it was too late. My tongue started to burn while eating salsa. Then it continued to worsen and burn when I ate anything spicy eventually including all alcohol, carbonation, toothpaste and a host of other foods. I went to 4 different doctors at Group Health (GH) trying to figure out what was causing it. I had a number of tests; like an MRI of the brain to see if it was a neurological problem. Finally while doing extensive blood work to locate the cause of the burning tongue syndrome the liver functions again came up elevated.

An MRI and other scans showed tumors in the liver and the biopsy confirmed they were malignant on October 15th. These tumors have metastasized from somewhere else in the body and are secondary in the liver. We conducted many tests to locate the primary source of the cancer in the liver including but not limited to; an Octreotide scan, CT scans, ultrasounds, blood work and scopes into the stomach and intestines. We found out with relative certainty that nothing a colonoscopy would have revealed (done in late 2011) was the primary, that the lymph nodes and bone marrow are not involved, that the chest, lungs and breasts are clear, that Ovarian and other pap test (done Sept 2012) related outcomes were clear and we ruled out countless other areas. Due to the behavior of these tumors it is believed that the primary is a very tiny spot in the Pancreas. However an endoscopic ultrasound of the Pancreas did not show the primary there.

Because the tumors were deemed to be stage 4 and inoperable by several doctors we began with a common medical management plan that entails shots of a synthetic version of a naturally occurring hormone in our body called Somostatin. The name of the treatment is Octreotide and it is a Somostatin analogue referred to as SAA. Initially for the first 3 weeks I gave myself 3 injections per day in the stomach. This was followed with a long acting injection every 28 days. Five months after the October MRI on March 22 we did a second MRI to see if there was tumor progression. The good news is that the MRI showed no tumor growth. In some cases SAA's shrink tumors, making them more likely to become operable. Mine did not shrink but 5 months may also not have been enough time for the Octreotide (SAA) to have shrunk them. We also check on whether the tumors are growing with blood work and lab results every 3 months.  

There are several options for possibly lowering the tumor burden, or reducing the size and number of tumors, that could make surgery an option. Surgery is the top choice with PNET because it is incurable and eventually tumor progression (growing) occurs and becomes deadly. There are several possible ways to move forward with treatment. We could begin radiation or chemotherapy and we could stay with the current medical management plan or do surgery to remove much of the tumor and let it regenerate before going back in to get the rest.  

Because this is a very rare type of cancer (one in a 100,000 people who have cancer have this) finding doctors who are experts in treatment plans and specialize in PNET (Pancreatic Neuroendocrine Tumors) is challenging. My medical provider Group Health (GH) does not have a GI (Gastro-intestinal) Oncologist on staff. I am seeing Dr. Feldman, an Oncologist with GH that has over 30 years’ experience. I have seen 2 GI Oncologists and a surgeon at Seattle Cancer Care Alliance (SCCA). Their multi-disciplinary team continues to receive all medical reports on my condition and I stay in touch with them as a second opinion team and experts in this field of care. I also met with an interdisciplinary team at Virginia Mason (VMMC) led by the wonderfully personable surgeon Dr. Rocha. I have been extremely impressed by the doctors I've met and worked with and also realized the extent to which I must manage my own treatment plan and stay intricately involved in every decision. I have done a lot of research and will attach some PDF's and documents to this blog in case any of you want to do any deep reading on PNET. :-) 

Many have asked me about alternative and experimental explorations and treatments including any ongoing clinical trials that might fit in with my condition. Through one of the many excellent cancer web sites out there I have been able to stay up with current and upcoming clinical trials. Because this is a rare cancer there are not a lot to choose from. The ones that exist are using drugs or treatment modalities that I don't yet want to move to. I have researched many opinions on diet and cancer. I have been given or purchased many cookbooks and books on diet and cancer. There is much controversy and variance of opinion depending on type of cancer. I have found that reducing or eliminating all sugars including honey, maple syrup, agave, fruit, dairy and carbs that turn quickly into sugar in our system, helps with the tumor symptoms and side effects of Octreotide. Blood sugar fluctuation is a major component of my illness. The tumors tend to raise blood sugar and cause a diabetic condition. SAA lowers blood sugar and can cause hypoglycemic conditions if over all food intake is not monitored and managed. The range has been from a blood sugar level of 300 prior to the start of treatment to 50. Most people probably know that low blood sugar can cause difficulties like dizziness, sweating, shaking and extreme fatigue after an episode. I have this pretty much figured out and managed. :-) Lately I have been letting myself off the "no sugar" plan a bit and searching for a middle ground of some sort. I may return to the strictness of the original diet. Basically protein and green vegetables is the plan excluding even carrots, beets and tomatoes and other favorite vegetables which have sugar. I've stabilized my fasting blood sugar level to be around 100-120. I can now enjoy a desert or pizza occasionally.

Besides diets I have explored and enjoyed going to yoga, meditating, naturopaths and am taking supplements and vitamins and doing acupuncture and Watsu (a water massage) for relaxation and stress management.  

Alternative opinions on treatment plans exist outside of the GH, VMMC and SCCA systems. I have been referred to a doctor Woltering in New Orleans who specializes in and runs a clinic specializing in PNET. There are also specialists in Germany and France. The survival rate is higher and the average time till tumor progression longer in these specialty NET clinics. The ones in Europe have access to some treatment modalities not yet approved in the US. I have an appointment with Dr. Woltering in New Orleans (NO) on May 1st. He seems to be a top expert on PNET in the US. We have sent all medical records and doctors here have discussed my case with him. There are several alternative plans he might recommend. 

I think that pretty much brings us up to date. The only other issue which I'm determined not to complain too much about here is the process of billing, invoicing, referrals, deductible’s and out-pocket stop loss. It is almost a full time job to manage the finances of having cancer. Even though my employer, CDSA, has a good medical plan with GH it is amazing what is not covered. In 2012 I quickly reached all limits of out of pocket stop loss between October and the end of the year. Unfortunately I also found out that not everything stops as charges to the patient when you reach the "stop loss out of pocket" amount. I had to start all over again to reach the deductible and "stop loss" in 2013. Referrals outside of the GH system and co-pays at appointments are just 2 of the challenges beyond "stop loss". I am eternally grateful for medical insurance. I am thankful that CDSA had medical benefits and also has short and long term disability insurance. 

In preparation for my May 1 appointment in New Orleans I’m having a CT scan of the abdomen and much blood work. When I return from NO I’ll update the blog with this new doctor’s opinion and share my decision about which course of action to take. Thanks again for your continued support.