Recovery in full swing

Hello everyone,

Caryn here, back from the long ordeal! :-) I'm happy to say that I'm enjoying the holiday season with friends and family. I've decorated the house, we've put up our tree, I've made some gingerbread cookies and presents are under the tree. All of this is so much more enjoyable after what I've just been through. Since you've heard various pieces or read Peter's descriptions I'll keep this update short.

On November 8th I had the second surgery in our plan to manage the Neuroendocrine tumors I was diagnosed with in October 2012. The surgery went well. Dr. Pommier at Oregon Health Sciences University (OHSU) performed the surgery and he removed the primary source of the cancer in the tip of the tail of the pancreas. He removed another small portion of the pancreas, removed the spleen, lymph node involvement and about an inch of my colon. Pain was managed well by an epidural. Later when that was removed we discovered I had an aversion to morphine at least in the dosage I received. I had hallucinations and nightmares resulting in my staying up all night one night to avoid the images that popped up if I closed my eyes. We found other pain solutions and it looked after a week in the hospital like I was ready to go home. Unfortunately, I had not yet had a fully formed BM.  This ended up being a big deal. Two days after we got home I had to go into the ER with a bowel obstruction. I was throwing up and unable to have a BM even after drastic measures like suppositories and enemas. The pain was intense and they admitted me. I had an NG tube put up my nose and down into my stomach to pump everything out of my stomach. This ended up being very painful and the tube was in for several days. I had no fluids or food by mouth for a long time while we tried to get the bowels to "wake up".  It ended up that I did not have an actual blockage, which was good, but that my bowels were "in shock" from the surgery and not functioning still. After a week I was having some BM activity and was sent home again only to return to the ER a few hours later. To make a long story short I spent another week in the hospital and was able to come home Thanksgiving afternoon.

I had a nice time visiting with friends and family who stopped by on and after Thanksgiving. I did miss having the whole family for Thanksgiving dinner at my house this year. We often have 2 dinners with 2 sides of the family because we can't really fit more than 17 people comfortably for dinner in our home. As many of you know I really like to decorate for Halloween and Thanksgiving and this year did only a little bit of decorating for those holidays, saving up my energy for Christmas decorating. We got our tree on Dec 1 and have been enjoying the house with all the holiday warmth. Peter put up the outside lights and they look really festive as usual. All 3 grandchildren; Kimani 3, Anyana 6 months and Paityn 7 weeks have been over to Grandma's house.

On December 2 we returned to OHSU for the post-op appointment and to have my GP drainage tube removed. I guess I forgot to mention that all this time, since November 8th,  I had a tube coming out of my left side that was draining pancreatic fluid as the pancreas closed back up and healed. Due to the lengthy hospital stay it had been left in a little longer than is usual. Unfortunately the OHSU team failed to mention to me that the removal would hurt and that the hours to follow removal would be or could be very painful. The Sunday night before the appointment Peter got us a really nice hotel room in Portland. We had a nice dinner, watched a movie and enjoyed the room. If we'd known I'd be in such pain following the 8 am appointment on Monday we would have booked another night and brought the Oxycodone with us. Since I had been off all pain meds and was taking just IB Profin we were unprepared on the way home from Portland for my abdomen to begin to hurt; the pain was a level 9-10. The tube had evidentially adhered to some internal areas and the bowels and intestines were now moving around into the space that the 2 feet of tubing had taken up. Luckily we were able to stop in Olympia and rest at my mom and dads for house for a few hours before continuing home to Seattle. I was sore for several days as every thing adjusted internally.

This Wednesday (12/11) I had an appointment with my Group Health (GH) oncologist Dr. Feldman. He felt my recovery was going well. He examined me and decided that all looked good. Although it has only been a month since the surgery I am really well on my way to feeling normal. I have some continuing digestive up set and need to eat small meals frequently avoiding fried foods and high fiber items. I'm experimenting with what I can eat without getting a stomach ache. I met with a nutritionist at Virginia Mason (VM) Hospital and will attempt to create a diet in January that honors the contradictory messages I have from various sources about what to eat. My plan will need to be specific for me. As a side note I forgot to mention above that the VM staff; nurses and doctors were fantastic. Luckily they have a partnership with GH and all 2 weeks was covered. GH has also been wonderful about covering the surgery at OHSU and visits to Pommier.

My future plan as outlined by both Dr. Pommier and Feldman (although they still disagree about some aspects of my care) includes labs and CT scans every 3 months. Due to the radiation from CT scans they will eventually go to every 6 months and then annually. We are adding a new drug to my monthly injection of Octreatide (LAR 30 Sandostatin). A reminder, Octreotide is a synthetic version of a naturally occurring hormone we produce called Sandostatin. These Pancreatic Neuroendocrine tumors (P-NET) I have are hormone producing. Sandostatin in large doses tells the body to stop producing or secreting insulin to handle sugar consumption among other things. It basically tells the tumors there is no reason to grow (emit hormones).  For many of us with P-NET Ocreotide not only keeps the tumors from growing or slows there growth, it manages symptoms like diarrhea, hot flashes and night sweats. I am currently symptom free and do not show signs of carcinoid syndrome which is where these symptoms are present. So the new drug that will join Octreotide in my monthly regimen is Zolodex and it is part of the bis-phosphonate drug family. Dr. Feldman said it is also called Zometa acid. Monthly I will have a 15 minute infusion through an IV at GH central of it at the same time I get the Octreotide injection. In 1-3% of people it can cause dental problems so I will be going to my dentist first and not start it until late January. Any dental work needed will have to be completed first and a note from the dentist stating my dental condition is required. It can also compromise the kidneys which must be monitored monthly prior to the dosage. It is controversial. Pommier thinks it positively affects survival rate while Dr. Feldman thinks it only affect quality of life issues. It is given to establish a strong bond around the areas where there are bone metastases. I have bone metastases in my left iliac crest (hip) and in my back lumbar spine. In addition to affecting kidney function it can cause low calcium levels. It is so strong and long lasting you can only be on it for 2 years and it will stay in your body for the remainder of your life. However, pain from bone metastases can be really severe. This is supposed to prevent, reduce and post pone that pain. While meeting with Dr. Pommier he let me know that a NET patient we both knew was currently dying. He thought she was dying of an inability to eat due to pain from bone metastases. If she'd been on this drug she might have survived. Dr. Feldman, who also knew her seemed to completely disagree. They had both met with her and treated her. She was the coordinator and founder of the NET support group that meets quarterly. I met with her in person, saw her at meetings and emailed and talked by phone. Her funeral is this Saturday. Another member of the support group died this last month. They both had NET's for 10-15 years. Finding doctors that understand NET's and who know and understand what drugs to use, when to do surgery and how to treat NET's is still very challenging for people newly diagnosed. I met a man with NET's from Olympia who just finally was able to get on Octreotide over a year after his diagnosis because no oncologists understood the need. He is meeting with Dr. Feldman next week and may have him as an oncologist since he can't find a GH doctor in Olympia or closer to him who has ever treated NET's. My research really helped initially and then my solution was to have a permanent second opinion with Dr. Back at Seattle Cancer Care Alliance (SCCA) along with Feldman and Pommier. I consider Pommier my main oncologist and doctor; even though he is a surgeon he is by far the most knowledgeable when it comes to NET. 

Now that I've done the hard work of the surgeries I should have a much better survival rate. Although the mean average survival rate is listed on-line as only 5 years many people are living longer. I have had the NET for probably 7 years before being diagnosed in October 2012. Most people with NET die of liver failure due to liver metastases. That is why we took all the larger tumors out of my liver in June. The tiny ones remaining would take many years to grow at this very slow rate or could possibly not grow at all. There is evidence that after the removal of the primary existing tumors grow even more slowly. There should also be no more metastases with the primary removed. That is why we have taken out the primary in the pancreas. I have NET's in my liver, bone, pancreas, lungs and Thyroid but all are very small. One of the main ways to keep an eye on tumor growth is the measure Chromogranin A in labs. This basically is a way to measure serotonin (a hormone) level in the body. If the tumors are active it measures high. In October 2012 the Chrom A was high but since I started Octreotide in Nov 2012 it has been in the normal range.

Now that I've lowered stress by retiring and increased joy by having time to see all my loved ones, exercise and decide what to eat I've got a healthy road ahead of me. Attitude is huge and while I had some down moments in the hospital I'm very excited about life and living. My husband, kids, parents, brother and sister in law and friends Louise and Sally were ever present during the hospital stays. Many cards, visitors, flowers, gifts, texts, emails and prayers kept me in good spirits. I am so truly blessed to be on this journey and living this life of mine. I am very thankful for all that I have in my life.