Happy Spring sunshine -off to Hawaii!

What a beautiful spring day it is! I am getting ready for my trip to Hawaii. It turns out I need to take some Octreotide short acting injectable with me for the last 10 days. When I was first diagnosed in October 2011 I had to give myself 3 shots per day in the tummy. I did this for 6 weeks until they could tell that I was tolerating the medication well. Then we went to the LAR 30 long acting shots that I get once every 28 days in my hip area (alternating sides). So for the last 10 days I'm in Hawaii I'll be giving myself the injections again. Only this time I have lost all sensitivity in the area where I get the shots due to the surgeries so I shouldn't even feel the injections. :-) It is a very tiny needle and I tolerated the shots well. The every 28 days shot is a very large needle. I have to bring the viles of Octreotide and syringes on the plane in my carry on along with a letter from my doctor. Octreotide has to be refrigerated so I have to take a cold bag with me and ask the flight attendants to put it in the fridge on the airplane. This will be interesting. As long as they understand I'm not a security threat. :-)

I got a massage this morning and have Paityn and my friend Louise over for the day. We are going to walk the 3 mile Seward Park Loop. My yard is full of color and blooming spring plants. This makes me really cheerful every time I see and smell it. I've got wonderful little Easter baskets for the 3 grandkids all ready to give since I won't be here on Easter. There are a lot of good bunny and spring books for little ones. I got a Grandma Loves You book that is so darling.

My darling husband is finishing up our taxes and the kids tonight before we leave for Hawaii. There are many benefits to having a Corporate Controller husband when it comes to budgets and taxes.

Below is an interesting email I got today from the company that distributes Octreotide.

Happy Spring!!!

Love,
Caryn





Dear RealSupport Member,

As a person living with the challenges of metastatic carcinoid tumors (carcinoid syndrome), it is important to know that you are not alone. There are many others who face the same challenges and have the same questions that you may have.

In response to your request for additional support, I am pleased to welcome you to RealSupport, a new program exclusively for people who are coping with the daily challenges of living with carcinoid syndrome. Your doctor may have told you about Sandostatin^® LAR Depot (octreotide acetate for injectable suspension). Sandostatin^® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term treatment of the severe diarrhea and flushing associated with metastatic carcinoid tumors and long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors in patients in who initial treatment with immediate release Sandostatin^® (octreotide acetate) Injection has been shown to be effective and tolerated. In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined. Treatment with Sandostatin LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor. Please see additional Important Safety Information below.

I have learned a lot since my diagnosis with carcinoid syndrome. As a retired school teacher, I have a strong belief in the value of education and support. RealSupport offers you a chance to learn about the challenges of carcinoid syndrome and about the experiences of other patients.

While RealSupport does not replace the guidance you receive from your health care team, it will serve as an additional source of information about carcinoid syndrome.

Through this program, you will receive:

• Patient Webcasts that give you a chance to view brief videos hosted by experts who can provide real insights into living with carcinoid syndrome
• Podcasts (ie, audio programs) via e-mail, featuring stories of real people with carcinoid syndrome
• A Treatment Journal designed specifically for people living with the severe diarrhea and flushing associated with carcinoid syndrome

If your doctor prescribes Sandostatin LAR in the near future, you will have the opportunity to update your information and receive appropriate support materials.

IMPORTANT SAFETY INFORMATION
Warnings and Precautions: Treatment with Sandostatin^® LAR Depot may affect gallbladder function, sugar metabolism, thyroid and heart function, and nutritional absorption, which may require monitoring by your doctor.
Before taking Sandostatin^® LAR Depot: Tell your doctor if you have a history of heart disease or are taking other medications, including: cyclosporine, insulin, oral hypoglycemic agents, beta-blockers, and bromocriptine.
Common side effects: Most patients experience side effects at some time. Some common side effects you may experience include: back pain, fatigue, headache, abdominal pain, nausea, and dizziness.
Other information: Patients with carcinoid tumors and VIPomas should adhere closely to their scheduled return visits for reinjection in order to minimize exacerbation of symptoms.

INDICATIONS AND USAGE
Sandostatin^® LAR Depot (octreotide acetate for injectable suspension) is indicated for long-term treatment of the severe diarreha and flushing episodes associated with metastatic carcinoid tumors and long-term treatment of the profuse watery diarrhea associated with VIP-secreting tumors in patients in whom initial treatment with immeditate release Sandostatin^® (octreotide acetate) Injection has been shown to be effective and tolerated. In patients with carcinoid syndrome and VIPomas, the effect of Sandostatin Injection and Sandostatin LAR Depot on tumor size, rate of growth and development of metastases has not been determined.

Smooth Sailing for now!

Hello everyone,

Following up on the last post I have had very good news. It has been determined that tumors have not grown, some have shrunk and that there is no cancer in my thyroid as previously thought. I will have another CT Scan in 6 months and labs done in 3 months. I will continue to have the Octreotide shot every 28 days. I am feeling much stronger and ready for more exercise and some weight loss. So far I have been consistently gaining weight which is good but you know there is a limit to how "big" I want to get. :-) As my choice of pants to wear each day became more and more limited and the scales were headed toward 160 I decided it was time to course correct again. I'm still trying to do the vegies and fruit primarily with no sugar, dairy, carbs, salt or alcohol but you know the better I feel the more I feel like celebrating, being happy, getting together with friends and treating myself. Its been difficult to stay disciplined even though I believe my good diet played a role in the tumor shrinkage.

My wonderful Uncle Jerry and Aunt Liz have generously given me there condo on the big Island to stay at for almost a month. I'll be gone April 3-30. I'm really excited. Peter will come from the 3rd to the 15th and Shari from Hood River will come the next week. I'll have a glorious week to myself there at the end. I'm looking forward to boating trips this summer, perhaps a kayaking trip to Utah to visit Wanda and a Ramero/Jamero family reunion in California in June. I'll be eating good and swimming in Hawaii and I hope to continue daily swimming when I return at the Lake Ridge outdoor swimming pool near my home. It opens on Mothers Day. I love being a mother and having a mother in my life and a daughter and son and 3 grandchildren.

This last March 15 was 29 years since my sister Cindi died in a car accident. I still think of her and miss her. My mom and I spoke of her on the day and I took Paityn, now 5 months old, down to Olympia to spend the day with her Great Grandma, in celebration of Cindi's life. Paityn was born on Cindi's birthday, October 18.

I was thrilled to spend happy time with Kimani, my oldest grandchild, who turned 4 on March 5th the same day my nephew turned 16 over on Vashon Island. I love all the family milestones and celebrating with loved ones. Everything about life seems more precious now. I spent an afternoon visiting with folks at CDSA while I had Ayana (9 months old, 2nd grandchild). Rhonda, Brianna, Liz and I shared laughter and as always it was great to see Maile, Nick and Flow. The team at Madrona CDSA continues to amaze me with their excellent preschool program where Kimani is a happy participant in joy filled days.

I'm heading off to yoga now and will walk around the Seward Park Loop afterwards if the sunshine stays around. If it pours down rain I'll ride the exercise bike and watch the nightly news then take a sauna. There is always a good choice and an option or possibility waiting I've noticed. The reason I can take off to do fun things in the afternoon while having Paityn over is that my loyal and fun friend Louise is here spending time with Paityn today.

Happy thoughts to you all during this glorious spring!

Good News

Last Friday I got the CT of the chest with contrast and the CT dual phase liver with pelvis scan. I was able to access the results later that day. The tumors have not grown since the October 2013 Cat scan and in some cases have actually shrunk.  The labs resulted with some in the normal range but many results I'm unable to decipher without a doctor. On Mon I'll see Dr Feldman, my Group Health oncologist. We will discuss lab and CT results. On Mon March 3, I'll do the same with OHSU surgeon Dr Pommier. I don't know how much the good diet, sauna, reduced stress and  exercise contributed to the good results but I do know all your prayers helped. I'll report on my Dr Feldman visit next week.

Happy Valentines Day

It's pouring down rain here outside my home office. Never the less we are leaving soon to go down to the ocean. I love walking on the beach rain or shine. Actually it is more often gray and windy. That ocean air does something to clear my mind and warm my heart. I'll report back about the Iron Springs Resort remodel. We'll have dinner in Ocean Shores tonight. I'm really looking forward to the rest and breathing ocean air.

Health wise I actually had a difficult week. As mentioned before, these are hormone emitting tumors I have in my system. There are periods where I feel really down. It does often come when I'm tired or sick with a cold as I was this week. There is a sadness and a feeling that something is wrong accompanied by the fatigue and general weakness. The fear that the tumors are growing or new ones are starting begins to be a frequent feeling. I try the mind over matter approach. I try to get my thinking and mind to change the negative thoughts that can lead to the negative feelings. I do believe our thinking can and does create our reality and that we are all capable of manifesting our reality to a certain degree or fully. So I try to think about wellness and envision myself being here when the grandchildren are in high school or older. Its hard to describe how difficult it is to stay positive. I think a lot of it is physical, from the hormones produced by the tumors, side effects of the drugs and not feeling well due to a compromised immune system. I recently got the books; Cognitive Behavioral Therapy (CBT) for Dummies (I hate the Dummies word), The Cognitive Behavioral Workbook for Anxiety and the Desire Map: A guide to creating goals with soul. I'll see if CBT can help me tackle toxic thought patterns and stay more hopeful.

I know for sure now that I am doing too much and that it affects my ability to feel well and be hopeful. I don't know how I'll cut back on the childcare just yet. I know I must though.

I had a nice visit with my mom and dad for lunch last week. I took Paityn down to Olympia. My friend Randy who also has NET's came over for lunch. It is comforting to have a friend with a very similar diagnosis and surprisingly similar effects from the tumors and side effects from the Octreotide.

Next week is the lab work and Friday is the CT scan that will measure the tumor growth and activity. I should know by Friday afternoon whether the tumors are growing and or spreading. On the following Monday I meet with my Group Health Oncologist Dr. Feldman to discuss the results and any actions that need to be taken. The next Monday, March 3, I meet with my surgeon at OHSU to discuss the results with him.

My wonderful daughter Jessica advised me yesterday to try to not worry about the things I can't change. To try to think about the things I do have control over (diet, exercise) and to work on letting go of worry about the things that stress me that are out of my control. It is really good advise regardless of how hard it is to follow. She did add that she knows it is easier said than done. :-)

All in all, life is so good and most of the time I know that. :-) I am blessed with a wonderful husband, parents, children, grandchildren, brother and sister in law, extended family, friends, a beautiful home, medical coverage, enough resources, good food, travels in the beautiful northwest and the time to enjoy all those I love and the world around me. Staying present to that everyday and every moment is the key to moving through this difficult illness with grace.

Happy Valentines Day! Love yourself and others and be well.

end of January update

Happy belated New Year to everyone still reading my blog. I'm sorry for the long delay between updates. I'm thinking of writing once per week and scheduling a day and time to do so. It is interesting when you're first retired how you begin using your time differently. My time does seem to evaporate at regular daily intervals where it is the end of the day and I'm trying to remember what all I did that day. I have been purchasing and preparing really healthy food which I've discovered does take a chunk of time and is something I really wasn't doing when I was working full time. Peter used to cook more than I did and it has switched to me preparing many of our meals partly because I'm the one trying to eat differently for my health. I enjoy cooking healthy foods - what a surprise!

I am enjoying the calm simplicity of cooking, chopping, doing dishes and washing counters. It is more fun, rewarding and relaxing than I would have guessed. Most of the time I'm eating just fruits, vegetables, nuts, seeds and a little healthy organic protein in the way of fish, chicken and sea food with a little red meat on occasion. Cutting out dairy, sugar, most carbs and grains, caffeine and alcohol is a big deal for me even though I always thought I ate so healthy before. The nice thing I'm settling in on is that I'm eating this way 90-95% of the time and occasionally allowing myself to go off for a meal or a part of a day. For the last football game I allowed myself to have nachos in the celebration and for the Super Bowl I will probably have something that doesn't fit perfectly into the plan like chicken wings that have teriyaki sauce that probably has sugar in it. When I go off of the diet I don't go far off and I don't stay off for more than a meal. I believe it is helping. My blood sugar levels and blood pressure levels are still higher than I'd like them to be even following the healthy life style diet. I check both blood and sugar levels from home having purchased a blood pressure machine this month.  I will be reporting the levels to Dr. Feldman and Dr. Shaul this week and may have to go on blood pressure medicine. I was warned prior to the pancreas surgery that I could end up with diabetes following the surgery. This may be happening but I'm still hoping to manage both sugar and blood pressure levels with diet rather than drugs. I never had high blood pressure or sugar levels before the surgeries.

I've located some good resources for how to eat right for the best liver function as I continue to want the liver to regenerate fully. Dr. Pommier did say in the last appointment that most people with P-NET's eventually die from liver failure so I'm determined to treat my liver as good as possible. I've been reading: The 9-Day Liver Detox Diet by Patrick Holford, Mind Medicine: The Secret of Powerful Healing by Uri Geller and the Fat Flush Plan (sections on the liver) by Ann Louise Gittleman. Some favorite healthy foods include hummus and Trader Joe's Tahini sauce used to dip veggies in; unsweetened cranberry juice with a little stevia, ice and lemon or lime; stir fry's with shrimp; salt substitutes with good spices, turmeric, decaf tea, avocados, kiwi, little oranges and nuts for snacks and eggs with lots of veggies for breakfast or banana's with almond or cashew butter.  It is important that I like what I'm eating.

 I also researched the use of saunas for supporting the liver and healthy detox functions in general. I purchased a wonderful 4 person sauna from the Olympic Hot Tub Company and it was delivered last week. I have been enjoying water with lemon in it (at least 8 glasses per day) and having 1 or 2 saunas per day. I really love it. I find it is extremely relaxing even if I only have 10 or 15 minutes. I prefer 30-45 minutes. I can meditate in there more easily and have noticed my skin feels better already. I'm not as pale as I was and feel more vital energy. I have been walking daily as well. On Mondays I get to walk with my friend Nancy from Suquamish who is over here babysitting her 1 year old grandson who lives near me on Beacon Hill. It is a joy for me to cruise with the strollers with another retired grandma. I have 3 month old Paityn on Mondays so it works out well. I see Nancy much more than I used to and it is wonderful. She also made sure I attended the basket making class led by our friend Marilyn, an elder in the Suquamish tribe earlier this month. I made my first Native basket and I must admit it turned out really well. I put pictures of it on Face book. Both Nancy and Marilyn are part of the Raven Canoe Society, my canoe journey group of friends. I have been paddling in the annual Native American canoe journey for over 15 years. This year the destination is Bella Bella on Vancouver Island. It is a 3 week paddling trip in July and then a week of celebrations. I'm signed up to participate at this point and hope I'll be up to it by then.

I think getting back into swimming will help me prepare for the canoe trip. The Lakewood Community outdoor pool opens in May and I believe I'll be swimming laps by then. That would be good preparation for paddling 6-8 hours per day. I couldn't do it now but can imagine I might be recovered and well enough by July. I really love this clean, warm, outdoor pool. Membership is reasonably priced and the owners and visitors are nice. It is a diverse, local community pool that isn't crowded. If you want more information on it just ask me. It's a great place. What I can do now is walk the whole Seward Park Loop which is almost 3 miles. I've had fun walking with my retired old friend Sally and with my daughter Jessica. Jessica is adjusting to going back to work at the University of Washington. I currently watch Paityn (her daughter) Monday and Wednesday while she works. Starting in February my very good old friend Louise, who used to watch my kids when they were little, will help out by watching Paityn on Wednesdays. She is really looking forward to being Auntie Louise. She has been coming over and getting to know Paityn (who is a delightfully happy baby) and taking walks too. Louise is also the one that was by my side during much of the hospital stay and the first week of recovery out of the hospital. (Along with Peter of course)

On Tuesday's I am babysitting my son Thaddeus's daughter, Ayana who was born in June. Its hard to believe she is 8 months old already. I have been babysitting at their house but this week will try bringing her to grandma's house and see how that goes.  I'm sure she'll eventually enjoy coming to my house as I have quite a collection of cool toys now down in the exercise/kids room. I bought Peter an elliptical training machine for his birthday this month and got the sauna installed, so what used to be the music room and toy room has become the health room as well. It still has the piano, drums and a wide variety of percussion instruments available to play. Somehow this all fits in one room. Ayana's older brother,  Kimani, who is almost 4 now gets to keep his Thomas the train collection upstairs in the living room. He is such a big boy, always picks up his trains after playing and loves his preschool. I pick him up once per week from school in the early afternoon and have him over to play and for dinner, returning him home at bedtime. In case you didn't count that is 3 grandchildren and 3 days of having grandchildren over per week for me. Luckily Louise and other friends are going to be good substitute grandma's for me when I have an appointment or am just tired on those days. I enjoy seeing all 3 of them very much and am just learning how to balance seeing them, supporting their parents with childcare and still taking care of my self. I'm working it out. :-)

Last week I found that my immune system just wasn't up to fighting off everything that comes my way. I seem to have gotten several infections and a cold or slight flu bug. I feel much better this week. This week end our friend Brian came over and did a 2 hour Reiki massage session with Peter and I. It was very relaxing and healing. It helped me get better. We actually had one of those wonderful Sundays where we read the paper, ate leisurely, did the Reiki and then went to Lincoln Park in W. Seattle to watch the sunset and walk along the beach. It was glorious.

This work - life balance thing that we all talk about is so different for me now, than it was when I was working. It is great to identify all the things I want to do and enjoy and then make them all happen in time while still taking care of myself.  We had the pleasure of having Peter's sisters and dad visit from California around his birthday the middle of January. The reason for the visit was that a close old friend of the family living here in Seattle, Fred Cordova, had passed away. I attended his beautiful service with at least a thousand others. It was a joyous and heartfelt occasion that described a life well lived. It was great to have so much family here to celebrate Peter's birthday. Celebrating with Peter's family, I have identified,  is one of my favorite things to do.

Another favorite thing to do is to spend time at the ocean. Peter and I will be staying at Iron Springs Resort on the Olympic Peninsula for 4 days; Valentine's Day through Presidents Day. I'll be getting some more good reading in. I'm currently reading Marianne Williamson's newest book that Peter gave me for Christmas. Reading in bed is another favorite thing to do. I'll be visiting my girlfriend Shari in Hood River in the month of February too for a couple of days. That always involves a great deal of laughing which will be good for me. On my way there I'll get to stop off in Olympia and spend time with my mom and dad and my new friend Randy. Randy and his wife have been good to get to know as he has P-NET also and we have very similar cases. I hope to stop and visit my friend Jean, on the Nisqually tribal council, on my way to or from the ocean as well. I'll try to squeeze in seeing some blues in Tacoma with my very old friend Becky. We met when I was 18 and she was my boss at The Evergreen State College Library. She is a big Blues and Jazz fan and one year we took a trip to New Orleans to the Jazz festival there together. But we'll see some local music in February.

I am focused on doing all these fun things when I am feeling well because some times I don't feel well. It is hard to always say why I don't feel good when I don't. Some of the flushing I had earlier in the diagnosis has returned and a general weakness and fatigue has continued to plague me. I have some diarrhea and intestinal problems. I have some pain in the mid-gut area still. It can hurt to get up from a sitting position or go up stairs. A recent stool sample came back showing that there was blood in the stool. This would normally mean a colonoscopy would be ordered. My oncologist and surgeon again disagree about whether I should do that now. The 2 positions are genuine; one says have it now because it could be further cancer the other says that my digestive track has been through a lot and it is only 2 months since I got out of the hospital. Drinking the yucky stuff that makes you have diarrhea till your system is cleared out may not be the best thing to do just yet. It is possible that this is nothing serious. I had a colonoscopy in November 2001 prior to the diagnosis of P-NET. They removed benign polyps at the that time. It is possible the blood came from hemorrhoids. It is unlikely that this very slow growing type of tumor would have popped up in this relatively short period of time. None the less I'll need to do another colonoscopy at some point in the near future to make sure.

The other difference in opinion between the surgeon and oncologist is about taking the zolodex drug I described in the last post. I've decided to wait on that. I'm going for current quality of life over possible prevention of future pain due to bone metastasis. Since there have been no clinical trials on this I don't really know the correct answer to this question and I may start the drug later in the year. Hopefully if I do try it I won't experience the flu like symptoms that 46% of those taking it have for up to a week after the 15 minute monthly infusion. On Friday I got my every 28 day injection of Octreotide. As often happens something went wrong with the needle once it went in and I had to be stuck twice. Actually the consistency of the Octreotide was off after stirring, making it not able to go through the needle. Darn, those are big needles and painful injections. My reactions afterwards really vary. Sometimes I'm very emotional as the hormones fluctuate, other times very tired. I felt pretty good this time and was able to attend my niece Roslin's 11th birthday party at the pottery painting place in Crossroads Mall in Bellevue that night. Peter painted a football for the super bowl in blue and green and I painted a grandpa coffee mug for him.  It is a good example of how I just try to feel my best and not miss out on good things every day even if I don't feel my very best.

I have Dr. appointments in February to check in on my progress toward full recovery. Late in the month I'll have a CT scan that we will use to measure tumor growth. in early March I'll return to see the surgeon and he will have seen the CT scan results. I also have an appointment with the OHSU thyroid specialist.

I am so grateful for my life and for every day I have here with all those I love. It is so funny that I am excited about the Seahawks since I have never been into football before. It is just wonderful to see the whole city so together in its support of this team. I like many of the characters on the team including Russell Wilson and Richard Sherman. I guess I'll take joy, teamwork and celebration where ever they occur as a good thing. Now if only some of that football money could go to fund education in Washington State I'd be thrilled.  :-) I have a very happy full life and I know how lucky I am to have all the love that I do in my life.

In closing, I just want to say again that I'm sorry it has taken me so long to write.  If any one out there wants to get together with me for a walk or a movie let me know. I've seen almost every movie nominated for best picture at the Oscars and a few others.  I'm up for visiting. I love walking the grand kids in the stroller. I hope all is well with your families and that you are enjoying life as much as I am. I had a great holiday season seeing my parents, brother and family and friends! I didn't expect January to continue with just as much fun but it has.
Be well!

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.

Virginia Mason Hospital - Day 3

Hallelujah!!  The horrible NG tube was removed from Caryn's nose/throat/stomach around noon today. Her nose and throat are still very raw and sore but getting better every hour. She started a clear liquid diet and has been instructed to go very slowly as they monitor her ability to take in liquids and watch for any bloating. So far so good.

She's looking forward to restarting the long road to recovery and leave the bowel problems behind. Thank you so much for your love and support.

Most likely not obstruction

 Met with her surgeon around noon. He feels strongly that this is an Ileus (sleeping bowel) rather than an obstruction. He says its common after this type of surgery. Her family doctor also came in at the same time and concurred.  He also explained that the doctors at OHSU probably felt they saw enough positive signs that the bowel had awoken that they released her. In fact they were not woken enough causing this backup in her stomach. The surgeon felt confident this condition would resolve itself. It just takes time. Plus walking would help too. I liked the surgeon and liked what I heard.

Unfortunately resolving itself means keeping the tube in her nose/throat/stomach which has been very painful to Caryn.  If it doesn't resolve itself and is indeed an obstruction, then surgery to clear the blockage would be the next step. And not for another couple of weeks due to the fact that she just underwent surgery. But as I said above, he's leaning towards it being an Ileus.  If so, lets hope it resolves in the next few days so she can come home and get better. Thanks for hanging in there with us.

http://medicine.med.nyu.edu/conditions-we-treat/conditions/ileus

Peter

Update - Monday 11/18

The recovery got progressively harder last week as she valiantly tried to have a bowel movement. Despite laxatives, suppositories and enemas, her bowel was slow to wake up. Her spirits were still high, especially on Thursday in anticipation of going home.  They tried pumping her with all of the above to get her bowels moving so she could be released Friday. She had a few very small BM's but nothing substantial since the surgery. She developed a lot of bloating and gas pain in her abdomen area while unsuccessful with having a BM.  Nevertheless, they felt she was ready to go home on Friday despite her not having a substantial BM. The car ride home was very uncomfortable due to the gas pains and bloating.

Saturday and Sunday got progressively worse as she was still unable to have a BM. Her pain got worse, she was unable to eat or drink much. Although she had a fairly substantial BM early Sunday morning (5:00 am) with the help of an enema, she got progressively worse rather than better as we hoped. Finally at approximately 7:00 pm Sunday , we brought her to Virginia Mason Hospital emergency. She was given a CT scan to ascertain if she had a bowel instruction. It was found that she does have a small obstruction, probably due to scarring or inflammation from the surgery but they are not completely sure.  She had to have a procedure called a NG tube where a clear plastic tube was inserted through her nose, past her throat and down into her stomach so that her stomach could be drained. It is extremely painful and uncomfortable for her. The worst part being we don't know how long it stays in. Could be today or a couple of days. It just depends on when the obstruction clears. Please pray that it is removed soon and her bowels resume ther natural function.  She will remain at Virginia Mason until the situation is resolved. We are hoping it resolves with the NG tube rather than surgery.

Thank you all for your thoughts and prayers. We're hoping and praying for a quick resolution to this small but painful complication so that she can resume the path to good health and a high quality of life.

Peter

2nd Surgery - updates

Peter here.

As you all know Caryn had her second surgery, the goal to remove the primary tumor in her pancreas, meaning parts of her pancreas and the entire spleen would be removed. The medical team led by her surgeon Dr. Rodney Pommier took extreme precautions to avoid any repeat of the complications Caryn had during her first surgery. He had a team of anesthesiologists at the ready in anticipation of any difficulties.

I am happy to report that her surgery went very smoothly and was deemed a success. Her blood pressure only had one small dip which they were able to control and the only unplanned action they needed to take was the removal of a one inch section of her colon, which is not considered serious. Plus the surgery took a minimal amount of time, probably 2-1/2 hours. Dr. Pommier was quite pleased and ebullient when he reported the results of the surgery to myself and to Caryn's parents Shirley and Ed Swan.

Recovery

Caryn was assigned to a regular hospital room after surgery, not ICU as in the first surgery. That was a surprise to us. It turns out this was indicative of the success of the surgery that no complications arose that would have necessitated recovery in the ICU.  She was pretty sedated Friday night. On Saturday there wasn't major pain or discomfort like there was during the first surgery. Her disposition and mood was great and her skin color was rosy and eyes bright. She did experience rough patches as expected during the first two days after surgery but as you all know, she's a trooper. Sunday night and Monday morning were rough for her as she experienced nausea and flushing. By this afternoon (Monday), she finally experienced a breakthrough in that she had her first bowel movement. Since then she has been feeling much better and has been able to sleep comfortably the last few hours, a good indication of her feeling better and worry-free. The doctors told her if she continues to progress, she may be able to leave by Wednesday. We'll see

In any case, this surgery and recovery has been a little easier than the first surgery and recovery. But I don't mean to mislead by thinking it's been pain and worry-free. She's still having her challenges as recovery is a very slow process. But relatively speaking, it has been a little better than the first surgery so far. I'm hoping the trend continues and we will be home safe and sound later this week. Thanks to all of you for you words of love and support throughout this ordeal. I want to send a special thanks to Shirley and Ed for their unconditional love and support during this challenging time.

The next report will either be done by me or better yet by Caryn upon her return home.