Wednesday, September 11, 2013
Family, friends, fish and fennel
It has truly been a fabulous summer even with the recovery from the June 28th surgery. Below are some of the events and activities I've engaged in just recently:
Sunday 9/8 I co-hosted a baby shower with my sister-in-law Linda, for my daughter Jessica due in October with her first child, a baby girl. Many family members and old friends were in attendance. My mom and dad helped out so much; as usual. I had a blast! I'll post pictures. Jessica is so darling with her tummy.
Last Thursday through Saturday I attended a gathering in Sydney BC of the C-Brats, a group of folks who own the same type of boat Peter and I do; a C-Dory. Ours is named C-Dancer since we met romantically salsa dancing at Century Ballroom in Seattle. We have many friends that we meet up with and boat with in the group dating back 8 years from when we purchased the boat at the Seattle boat show. One of my favorite boat buddies, Sam, is a writer for the Waggoner's Guide for boaters and has a fantastic blog about his travels on his 22 foot C-Dory very similar to ours. We love Sydney BC. If you haven't been, plan a trip there. The bookstores, restaurants, coffee shops, marina, shopping and people are great! We had good water conditions for our trip and the San Juan's were as usual breath takingly beautiful. The sun was out almost all week end and we missed the thunder and lightening rain part but got to see a little colorful lightening off in the distant mountains.
I've spent some fun time with my son Thaddeus and his family after delivering little Ayana in June. Kimani (3 and a half, he'll tell you when asked) started preschool a week ago at Madrona CDSA and loves it. His teachers Heather and Dora have been with CDSA for 20 years. I hired them in my first year. I get to pick him up once per week and have him over. He is a pure joy and blessing in my life. He has a beautiful disposition and is a happy and well loved child. His parents are doing such a good job. Thank you Lindsey and Thaddeus for sharing both your children with me, Grandma, so lovingly.
My husband Peter's dad (Peter Sr.) turned 83 and was/is here in Seattle for the celebration. Jackie (sister in law) had a very fun party for him at her house at the end of August. We luckily get a turn with him staying at our house for a little while. I've never met a more engaging, exciting, energetic and enthusiastic person in their 80's. Honestly, dad Jamero is so fun to have visit and to get to be around. We just found out he will soon be a great grandpa for the first time. Peter's sisters daughter is pregnant with a baby girl. Congratulations Jamero family!! I love reading the paper with him in the morning over coffee and talking politics. Yesterday he went to a party at the CDSA office with me and chatted up several employees. It was a going away party for our data specialist, David, a truly dedicated and brilliant friend. He's starting his doctoral program at UW. Dad fit right in talking with David and everyone else.
Not only have I started back in swimming laps but in addition to making way back up to 25 laps heading to 50, I started Aqua Zumba.
SCCA offers 2 free yoga classes per week I've been attending and Columbia Cities, Lotus Yoga offers a free class weekly for cancer patients and survivors. I've been enjoying them.
I got to visit my very good old friend Ed Carrier, an elder in the Suquamish tribe for the day at the end of August. He lives in Indianola on the beach and we spent the day eating, beach walking and looking at his baskets (he is a well known weaver) and his carvings. Next time I'll see if we can go out in the canoe he carved like we used to. He also brought me over to his horse farm a mile from his home. He and Lynn Ferguson, who runs the farm, have offered for me to come horse back riding when ever I want. I can't wait. Horse back riding was on my recently produced list of things I most enjoy doing and then it just appeared as an opportunity in my life. Many synchronistic and magical things like that have been happening, all contributing to my happiness.
I've been going to different farmers markets buying fresh local organic produce, duck eggs, meat and flowers; another favorite activity.
I attended the Sunset Supper at the Pike Place Market with my husband, where all the greatest chefs in Seattle, wineries and breweries have tastings of their wares. It is an all you can eat affair, walking around plate in hand, getting everything from salmon to home made ice cream and cupcakes with the view of the sound behind the market. Needless to say I did not diet that night but I did dress up in a great outfit.
I went to a wedding reception at the market as well in a beautiful new loft space that was really fancy (rents for $1500 a night) and went to a Birthday party for one of Peter's band mates in the Peter Jamero Project. I also attended an event on the roof top deck at the Inn at the Market and saw a great sunset.
On August 18th I went to a family reunion at my cousins home on Mason Lake. Ken and Julie are the best hosts and we enjoyed boating and eating with family immensely all day.
Peter and I stayed at the Monico Hotel in Portland the night before seeing Dr. Pommier. I highly recommend this 5 star Kimpton property. We had breakfast with our good friend Kurt an emergency room doctor in Portland who was present at my surgery.
I've been out on the boat fishing with Peter twice. The last we limited with 8 fish; 4 Coho and 4 pinks. Peter used his smoker to smoke the pinks and made the best smoked salmon I have ever tasted and I've tasted a lot. We have been treating others to it where ever we go. Tonight he is making another batch because we're all out and addicted to it. Besides family members are starting to put in orders for it. :-)
Our trip to Westport for Peter to fish gave me an opportunity to walk on the beach another favorite activity.
I have visited my CDSA family and found it to be heartwarming. Rhonda (HR) and Maile, my Executive Assistant and the board liaison have been amazingly supportive and helpful in the transition now underway.
I've discovered fennel tea helps to reduce the number of night sweats and hot flashes produced by the hormone emitting tumors. I love fennel.
And that is just the recent fun stuff I can remember. Have a wonderful day. I'm going to Qigong and then to walk Green Lake with a friend. I get to pick Kimani up from preschool today! :-)
Thursday, September 5, 2013
Retirement planned/medical update
As many of you know the news of my transition out of the Executive Director position at CDSA is now public. I gave a talk to the majority of our 75+ staff last week at a professional development day and then was able to be there for the remainder of the lunch break to talk individually with many. We have staff at CDSA that I hired 20, 15 and 10 years ago that are still excited about working for the agency. We sent emails internally and externally to the larger community with the news and I have received many thoughtful letters of support. We are giving internal candidates a chance to apply before considering opening it up to the outside. Obviously this is a time of big change, opportunity and growth not just for the agency but for me personally. (I'll write more about all the fun things I'm doing right now later). I know CDSA will do well moving forward and I am at peace with my performance over the years and the good shape I'm leaving the agency in for the next ED. I do know that my work has helped thousands of kids to be more happy and successful in school and life. We have assisted many parents and SPS teachers in countless ways. I am thankful for the important things I have learned from so many wonderful people in the field and from extraordinary co-workers and leaders at CDSA over the years. I'm looking forward to continuing to learn and grow in future endeavors but will never forget the things I was taught by all sorts of special people along the way over these 21 years.
I know that this transition is the right thing to do for me to remain healthy and recover. I want to return to and stay in top shape for the recovery from the 1 surgery I've had and the two that I'll need to remove the tumors. My oncologist, Dr. Back, with Cancer Care Alliance (SCCA) stated clearly that I should not be working. Dr. Back was especially adamant about rest and stress reduction. Both doctors (also surgical oncologist Dr. Pommier at Oregon Health Sciences University (OHSU) asked me to try not to worry about where else the cancer might be in my body right now. Easier said than done but I'm doing pretty well with not worrying. All in all I've been having lots of fun and feeling really good but I'll detail that in a second blog post.
I had an excellent meeting a few weeks ago with my surgeon Dr. Pommier in Portland who said I was recovering well. The next surgery on November 8th to remove part of the pancreas, the spleen and lymph nodes will not be as difficult as the first surgery on the liver and gallbladder. It will be less recovery time in ICU and the hospital. My recovery could be under 2 months instead of 3. I made an appointment with a thyroid specialist, Dr. Mira Milas, in surgical oncology at OHSU for later in the month. I met her while I was in the hospital recovering in July and we really hit it off. She'll decide whether another biopsy is necessary to determine what type of cancer is in the thyroid and whether to remove it. The tissue that Group Health collected in a fine needle aspiration was found by 2 labs to be inconclusive about type of cancer. I'm not that worried about the thyroid issue. It is a relatively small operation to remove it and I don't need it to survive. :-) I do feel pain and soreness in my left hip frequently and don't yet know if it is a result of the bone metastases there. We do still know from comparing MRI's from over a 6 month period that the tumors we are monitoring are not growing due to the injection every 28 days of Octreotide. The primary cancer in the pancreas should also not be able to send cancer out anywhere else at this point so metastases most likely all occurred before we started Octreotide in October 2012. In the Octreotide scan (different from a MRI) in March 2013 several other areas lit up as possible metastases (spots of cancer) including the thyroid and hip bone. It is still difficult not to worry where else it might be and what else we should/could be doing to stop it. After the second surgery we will do a new assessment of which tumors to monitor since we will have removed all those we were monitoring in the liver for rate of growth. We'll need new measurements and a new schedule of frequency to scan and to check the labs. It is hard for me to believe that it has been a year since my malignant diagnosis.
I am now working with the staff and board of CDSA about 8 hours per week to help with the transition. This amount of work was approved by the doctors and the CDSA insurance company, UNUM. I am on a short term disability leave through October 3. It was a relief last week when my long term disability (ltd) claim was approved to begin October 4. This type of ltd coverage can extend to age 65 and has a higher reimbursement rate than the 90 day short term disability I'm on now. If I want to work part time later, I can without loosing the ltd. It helps financially that I have a supportive husband working full time and that our finances are in good shape. It is fun to think of the endless possibilities that await me. For now I will happily help CDSA transition through the end of the year, see my family, grandchildren, friends and take care of myself. The new ED could be selected as early as October 1st, giving me time before the November 8th surgery to do some orientation with the successful candidate and to transition from short to long term disability. Thank you again to CDSA for having wonderful benefits and insurance. When I started at CDSA there were no benefits. As soon as we could afford to I added benefits to all part time and full time staff including medical, dental, matched retirement, vacation/sick leave, short and long term disability, childcare benefit and our birthday off and paid. It has certainly been valuable to me although I never imagined I'd be the one using the disability insurance. If you'd like a copy of the letter that was sent out about my transition let me know and I'll forward it. It was a nice letter. We may have an appreciation party for me toward the end of October sponsored by board and staff.
My health these days is still challenging even though I feel almost fully recovered from the surgery. I still am fatigued easier than before the surgery and unable to do everything I did before physically. I'm working on getting my strength back but not exercising for almost 3 months takes a toll on your body when you're my age. It will take a while to build back up strength and stamina. I am determined to get in good shape again prior to the Nov 8th surgery. I started back in lap swimming and hope to make it back to 50 laps by the end of October. I'm already at 25 crawl stroke laps without stopping. I'm walking all the way around the Seward Park Loop (2.5 miles) again and my daughter Jessica is coming over at 6 today to walk with me. I really enjoy walking with others so anyone who wants to give me a call and set up a walking date is welcome to.
The other biggest difficulty is that my digestion has not normalized since the surgery. On the one hand I'm gaining weight due to the low level of exercise and the high level of eating good food and on the other I'm trying to regain exercise routines and eat right. :-) My doctors told me to eat everything and not to loose weight. They thought I would loose during the surgical recovery but I did not. The stomach cramps, bloating, pain and diarrhea have worsened and follow almost every meal and snack. The symptoms mimic Irritable Bowel Syndrome (IBS) which I never had before. While at yoga at SCCA yesterday I bought a book on IBS in the Smile gift shop. It has foods to avoid and foods to prioritize to alleviate the problems. Several people have told me that after having their Gall Bladder out it took a year for their digestion to stabilize and that they now have to take pro-biotic and digestive enzymes. My diet with this ordeal has changed several times. I'm constantly tweaking it and then periodically just saying ok never mind all that, I'm having ice cream and hot fudge sauce (among other yummy things). I guess it is after all a balance and all things in moderation. One friend told me eat 80% good and 20% bad and you should be ok. :-) I am trying not to have a deprived mentality but a positive one about eating and everything else. I live in an abundant life, not an overly restricted one. In fact there have been so many great things occurring that I'm writing the next blog entry on "my amazingly fun and wonderful summer."
I know that this transition is the right thing to do for me to remain healthy and recover. I want to return to and stay in top shape for the recovery from the 1 surgery I've had and the two that I'll need to remove the tumors. My oncologist, Dr. Back, with Cancer Care Alliance (SCCA) stated clearly that I should not be working. Dr. Back was especially adamant about rest and stress reduction. Both doctors (also surgical oncologist Dr. Pommier at Oregon Health Sciences University (OHSU) asked me to try not to worry about where else the cancer might be in my body right now. Easier said than done but I'm doing pretty well with not worrying. All in all I've been having lots of fun and feeling really good but I'll detail that in a second blog post.
I had an excellent meeting a few weeks ago with my surgeon Dr. Pommier in Portland who said I was recovering well. The next surgery on November 8th to remove part of the pancreas, the spleen and lymph nodes will not be as difficult as the first surgery on the liver and gallbladder. It will be less recovery time in ICU and the hospital. My recovery could be under 2 months instead of 3. I made an appointment with a thyroid specialist, Dr. Mira Milas, in surgical oncology at OHSU for later in the month. I met her while I was in the hospital recovering in July and we really hit it off. She'll decide whether another biopsy is necessary to determine what type of cancer is in the thyroid and whether to remove it. The tissue that Group Health collected in a fine needle aspiration was found by 2 labs to be inconclusive about type of cancer. I'm not that worried about the thyroid issue. It is a relatively small operation to remove it and I don't need it to survive. :-) I do feel pain and soreness in my left hip frequently and don't yet know if it is a result of the bone metastases there. We do still know from comparing MRI's from over a 6 month period that the tumors we are monitoring are not growing due to the injection every 28 days of Octreotide. The primary cancer in the pancreas should also not be able to send cancer out anywhere else at this point so metastases most likely all occurred before we started Octreotide in October 2012. In the Octreotide scan (different from a MRI) in March 2013 several other areas lit up as possible metastases (spots of cancer) including the thyroid and hip bone. It is still difficult not to worry where else it might be and what else we should/could be doing to stop it. After the second surgery we will do a new assessment of which tumors to monitor since we will have removed all those we were monitoring in the liver for rate of growth. We'll need new measurements and a new schedule of frequency to scan and to check the labs. It is hard for me to believe that it has been a year since my malignant diagnosis.
I am now working with the staff and board of CDSA about 8 hours per week to help with the transition. This amount of work was approved by the doctors and the CDSA insurance company, UNUM. I am on a short term disability leave through October 3. It was a relief last week when my long term disability (ltd) claim was approved to begin October 4. This type of ltd coverage can extend to age 65 and has a higher reimbursement rate than the 90 day short term disability I'm on now. If I want to work part time later, I can without loosing the ltd. It helps financially that I have a supportive husband working full time and that our finances are in good shape. It is fun to think of the endless possibilities that await me. For now I will happily help CDSA transition through the end of the year, see my family, grandchildren, friends and take care of myself. The new ED could be selected as early as October 1st, giving me time before the November 8th surgery to do some orientation with the successful candidate and to transition from short to long term disability. Thank you again to CDSA for having wonderful benefits and insurance. When I started at CDSA there were no benefits. As soon as we could afford to I added benefits to all part time and full time staff including medical, dental, matched retirement, vacation/sick leave, short and long term disability, childcare benefit and our birthday off and paid. It has certainly been valuable to me although I never imagined I'd be the one using the disability insurance. If you'd like a copy of the letter that was sent out about my transition let me know and I'll forward it. It was a nice letter. We may have an appreciation party for me toward the end of October sponsored by board and staff.
My health these days is still challenging even though I feel almost fully recovered from the surgery. I still am fatigued easier than before the surgery and unable to do everything I did before physically. I'm working on getting my strength back but not exercising for almost 3 months takes a toll on your body when you're my age. It will take a while to build back up strength and stamina. I am determined to get in good shape again prior to the Nov 8th surgery. I started back in lap swimming and hope to make it back to 50 laps by the end of October. I'm already at 25 crawl stroke laps without stopping. I'm walking all the way around the Seward Park Loop (2.5 miles) again and my daughter Jessica is coming over at 6 today to walk with me. I really enjoy walking with others so anyone who wants to give me a call and set up a walking date is welcome to.
The other biggest difficulty is that my digestion has not normalized since the surgery. On the one hand I'm gaining weight due to the low level of exercise and the high level of eating good food and on the other I'm trying to regain exercise routines and eat right. :-) My doctors told me to eat everything and not to loose weight. They thought I would loose during the surgical recovery but I did not. The stomach cramps, bloating, pain and diarrhea have worsened and follow almost every meal and snack. The symptoms mimic Irritable Bowel Syndrome (IBS) which I never had before. While at yoga at SCCA yesterday I bought a book on IBS in the Smile gift shop. It has foods to avoid and foods to prioritize to alleviate the problems. Several people have told me that after having their Gall Bladder out it took a year for their digestion to stabilize and that they now have to take pro-biotic and digestive enzymes. My diet with this ordeal has changed several times. I'm constantly tweaking it and then periodically just saying ok never mind all that, I'm having ice cream and hot fudge sauce (among other yummy things). I guess it is after all a balance and all things in moderation. One friend told me eat 80% good and 20% bad and you should be ok. :-) I am trying not to have a deprived mentality but a positive one about eating and everything else. I live in an abundant life, not an overly restricted one. In fact there have been so many great things occurring that I'm writing the next blog entry on "my amazingly fun and wonderful summer."
Friday, August 16, 2013
SCCA Dr. Apt and 10th anniversary
Last Saturday I enjoyed a 10th anniversary celebration with Peter at Cannon Beach. The Oregon coast is so beautiful, we love Haystack rock and could see it from our room. The food was good, bed and pillows super comfortable. We had a fire on the beach and cooked smores. My favorite part is the chocolate and I admit to having more of the Hershey bars than Peter did. :-) I'll get some pictures of the trip here soon. You'll be able to see I was totally relaxed. We had long beach walks daily.
I'll also post pictures of my growing granddaughter Ayana who has plumped up since being born in June. Her big brother Kimani, 3 and a half, is a joy to be with and we spent the day together yesterday. We visited the CDSA office and staff were amazed at how much he had grown and how much he was talking. I have really cute new pictures of him as well. Last but not least Jessica and Q took some great pregnancy pictures this last week. I'll have to post at least a few as she looks so darling with her little tummy holding that precious little girl. October 15th (the due date) will be here before we know it.
My SCCA (Seattle Cancer Care Alliance) doctor, Dr. Back, was reminding me on Tuesday that the next surgery (11/8) will be here before I know it too and that my full time job is still to recover and prepare. This entails sleeping, eating, exercise (especially walking) and remaining positive and unstressed from the variety of sources I could let stress in from. I have been reading and listening to CD's and DVD's about Mindfulness and the research and data on the medical benefits of reducing stress through meditation. I like Jon Kabat-Zinn, Pema Chodren, Mark Nepo, Thich Nhat Hanh and many others. I spent my $100 gift card at Amazon on-line and got lots of good books. I've started riding the stationary bike which doesn't hurt my tender areas. I'm off even the aspirin I was taking for discomfort. Dr. Back encouraged these activities and also said my insides are a ways away from being healed and to remember that when I'm feeling good and not do too much. It still hurts to bend over and pick something up and when I sneeze, yawn, turn or twist. Getting up from sitting and even more from laying down still lets me know I'm only half way through the recovery process. Sleeping can be a little tricky still. Getting comfortable is often difficult but I'm beginning to be able to spend short times on my side instead of having to always be on my back when sleeping.
It has been fun visiting my parents and talking to my mom recently. She is helping to edit my brother Ed's book that will be re-released soon about the history and birds of Vashon Island where they live. Ed's wife Linda continues to advise me on medical reports and will help with Jessica's upcoming baby shower. My nephews are getting ready to go back to school but get to spend a few weeks with Grandma and Grandpa before they do as Ed and Linda travel out of the country.
More family travel; Peter's dad will be visiting for a few weeks, arriving from California on August 26th. We always enjoy his visits and will be able to help him celebrate his birthday occurring while he's here. His visit assures I'll get to see more of my sister-in-law Jackie, her husband Dickie and daughter Roslin; always a treat.
Thanks again to my neighbors who always take care of the house when we're out of town and remark on my colorful yard, frequently meeting me out in the street to talk. Mordo and Beverly; Cynthia and Charles, Ian and Bettina and Jim. I love it that we're so close to our neighbors!
This week end I am so excited to attend Troy and Jerry's wedding reception at the Pike Place Market and an annual family reunion of sorts at my cousin Ken and Julie's house on Mason Lake near Shelton. It is always a joyous occasion to visit them at their beautiful home. I have been visiting this location since I was a little girl and I have many pictures of myself swimming at all different ages in the lake. Jan Cox, who I also don't get to see nearly enough I hope will be there along with my immediate family. I guess I'm not up to water skiing this year but hopefully Peter will go out on the jet ski. What a beautiful summer in the NW we are having.
I feel so blessed to be having time to garden, be on and near the water, walk, read, spend time with loved ones, take week end trips and just plain enjoy life. I feel really strong in my recovery and can see myself coming out of the next surgery ready to recover again. This time I know what to expect, not that it will be exactly the same. I'm getting closer each day to this ordeal passing by and being a memory as I live on in health. I'm thankful for all that my body is doing to help me recover and fight this. It is amazing. I am learning more and more how to enjoy and be present for each moment. Life is precious.
Look for pictures capturing happiness to be posted this week end. Next week I'll write about my appointment with surgeon, Dr. Pommier in Portland Monday morning at 8:30. Hopefully I'll have more fresh salmon for dinner next week as Peter and friend Len will go out early Tuesday morning near Astoria to the famous buoy 10. Whether they get a big King each or pinks for us to make smoked salmon out of, I'll be happy.
Thanks for all your help to remain positive as I move through this period of my life filled with new challenges and blessings.
I'll also post pictures of my growing granddaughter Ayana who has plumped up since being born in June. Her big brother Kimani, 3 and a half, is a joy to be with and we spent the day together yesterday. We visited the CDSA office and staff were amazed at how much he had grown and how much he was talking. I have really cute new pictures of him as well. Last but not least Jessica and Q took some great pregnancy pictures this last week. I'll have to post at least a few as she looks so darling with her little tummy holding that precious little girl. October 15th (the due date) will be here before we know it.
My SCCA (Seattle Cancer Care Alliance) doctor, Dr. Back, was reminding me on Tuesday that the next surgery (11/8) will be here before I know it too and that my full time job is still to recover and prepare. This entails sleeping, eating, exercise (especially walking) and remaining positive and unstressed from the variety of sources I could let stress in from. I have been reading and listening to CD's and DVD's about Mindfulness and the research and data on the medical benefits of reducing stress through meditation. I like Jon Kabat-Zinn, Pema Chodren, Mark Nepo, Thich Nhat Hanh and many others. I spent my $100 gift card at Amazon on-line and got lots of good books. I've started riding the stationary bike which doesn't hurt my tender areas. I'm off even the aspirin I was taking for discomfort. Dr. Back encouraged these activities and also said my insides are a ways away from being healed and to remember that when I'm feeling good and not do too much. It still hurts to bend over and pick something up and when I sneeze, yawn, turn or twist. Getting up from sitting and even more from laying down still lets me know I'm only half way through the recovery process. Sleeping can be a little tricky still. Getting comfortable is often difficult but I'm beginning to be able to spend short times on my side instead of having to always be on my back when sleeping.
It has been fun visiting my parents and talking to my mom recently. She is helping to edit my brother Ed's book that will be re-released soon about the history and birds of Vashon Island where they live. Ed's wife Linda continues to advise me on medical reports and will help with Jessica's upcoming baby shower. My nephews are getting ready to go back to school but get to spend a few weeks with Grandma and Grandpa before they do as Ed and Linda travel out of the country.
More family travel; Peter's dad will be visiting for a few weeks, arriving from California on August 26th. We always enjoy his visits and will be able to help him celebrate his birthday occurring while he's here. His visit assures I'll get to see more of my sister-in-law Jackie, her husband Dickie and daughter Roslin; always a treat.
Thanks again to my neighbors who always take care of the house when we're out of town and remark on my colorful yard, frequently meeting me out in the street to talk. Mordo and Beverly; Cynthia and Charles, Ian and Bettina and Jim. I love it that we're so close to our neighbors!
This week end I am so excited to attend Troy and Jerry's wedding reception at the Pike Place Market and an annual family reunion of sorts at my cousin Ken and Julie's house on Mason Lake near Shelton. It is always a joyous occasion to visit them at their beautiful home. I have been visiting this location since I was a little girl and I have many pictures of myself swimming at all different ages in the lake. Jan Cox, who I also don't get to see nearly enough I hope will be there along with my immediate family. I guess I'm not up to water skiing this year but hopefully Peter will go out on the jet ski. What a beautiful summer in the NW we are having.
I feel so blessed to be having time to garden, be on and near the water, walk, read, spend time with loved ones, take week end trips and just plain enjoy life. I feel really strong in my recovery and can see myself coming out of the next surgery ready to recover again. This time I know what to expect, not that it will be exactly the same. I'm getting closer each day to this ordeal passing by and being a memory as I live on in health. I'm thankful for all that my body is doing to help me recover and fight this. It is amazing. I am learning more and more how to enjoy and be present for each moment. Life is precious.
Look for pictures capturing happiness to be posted this week end. Next week I'll write about my appointment with surgeon, Dr. Pommier in Portland Monday morning at 8:30. Hopefully I'll have more fresh salmon for dinner next week as Peter and friend Len will go out early Tuesday morning near Astoria to the famous buoy 10. Whether they get a big King each or pinks for us to make smoked salmon out of, I'll be happy.
Thanks for all your help to remain positive as I move through this period of my life filled with new challenges and blessings.
Wednesday, July 31, 2013
One month since surgery; recovery in progress
Ups and downs continue in this long recovery process. It is often 2 steps forward one step back. Sometimes the slide back could be because I've done a little too much, other times it has more to do with constipation, hydration or something else that is unknown but a part of the deep physical healing. The scar is well healed now with no scabbing left. I still follow a strict regimen of eating (extra food prep and shopping), hydrating, taking pills and supplements, checking blood sugar, resting with feet and head up above the heart and exercising to regain strength. I keep a log daily.
Fun activities I've enjoyed in the last few weeks since posting include the Paul McCartney concert; possibly the best concert I've ever been to. We got there and left early, avoiding the crowds and I sat pretty still not dancing and standing. It was difficult for me physically but worth it. The next week I was delighted with fresh crab from one of Peters crabbing trips on the boat. He went out with his daughter Lauren and her boyfriend. I am still unable to take the movement of being on the boat. He has also had several fishing trips catching salmon that we've been enjoying for dinner.
Last weekend I went to Westport with Peter who went fishing. I was able to sit in the back seat with my feel propped up into the front seat. I prevented my ankles from swelling that way and my abs felt more relaxed. I loved visiting the ocean and walking slowly in the surf barefooted. I've loved the ocean since I was a child.
My mom completed a DVD of my childhood and gave it to me to watch this last month. It is fun and there are lots of pictures of all of us at the beach. It is fun to see the whole family in the 50's, 60's, 70's, 80's and 90's. Wow!
I had several CDSA meetings and visited the office. It was fun to see everyone. I miss my co-workers, board members and the CDSA community so much! After 21 years at CDSA it is very different for me not to be going in every day. My short term disability leave goes through September.
I went to a Mariners game (walked slowly to my seat, stayed there while Peter got us food and left early before the crowds). They lost of course but we had great seats, 4 rows up, by third base.
I've been doing a little gardening most days and my yard is colorful.
I've visited or been visited by my parents, my son, daughter, brother and his family, sister-in-law and her family, girlfriends; Sally, Louise, Molly, Rhonda, Maile and Wendy. Had many emails, phone calls and cards from other family members and friends.
I've cleaned out 2 closets and taken bins to consignment stores (didn't lift them all by myself) and donated several sacks of good household and clothes items. This clearing out and simplifying actually cheers me up and is something I can do that is not too challenging physically. I'm going to make it through all my closets and the garage eventually.
In discussing challenges it is good to note that my recovery is too far along for some of the most dangerous problems to occur. For instance I shouldn't now develop an abscess or most types of infections and nothing internally should rupture or tear causing internal bleeding. Inflammation and some fluid retention remains and increased pain at times can be from gas and bloating in the abdomen. Bending over to pick things up, turning or twisting, lifting anything even slightly heavy, walking up stairs and a host of other activities are still uncomfortable or not possible. I have been doing a little driving since I've been off the Oxycodone during the day. I am down to sometimes needing one at night. I take Ibuprofen every 4-6 hours. By 8 pm the accumulation of the days efforts often leaves me in enough pain that I want to take an Oxycodone. I could do less and rest more and perhaps I could lessen the evening pain. I find that even though I have great books, CD's and DVD's I am impatient to get up and get going. I'm glad that one of my good qualities is that I have a lot of energy and stamina. At times like this I really have to watch my natural instinct to go, go, go. I've had some dizzy spells and low blood sugar episodes but am getting better as my blood level increases. Just two weeks ago I was only at a blood level of 28 (normal is 36). A few days later when we did labs again I was already to 30 and I'm sure now I'm closer to normal. I'm taking iron and vitamin C now to help it absorb. That is one of the building blocks to make hemoglobin (blood). I lost a lot of blood in the surgery but didn't require a blood transfusion (the norm is to give a transfusion if you get down to the 20-21 range). That is why now I must build my blood level back up. The labs also showed increased liver function, although of course they show up as abnormal given the surgery. My liver is regenerating and everything else in my abdomen seems to be making changes and feels different of course than before surgery. I have a tight, full, hard feeling that is uncomfortable both around the scar and in the abdominal region in general. It is hard to describe. I found out that a piece of film/mesh was put in and left in to help guard against bowel obstruction and to keep things from adhering to each other that should not prior to the next surgery. This should make the next surgery scheduled for November 8th easier but may be causing soreness now. I noticed I'm about the same weight that I was prior to the surgery. I think I've lost some weight in my arms and legs but that the abdomen is larger and heavier. I'll ask about that in my next appointment.
I have scheduled an appointment with Dr. Pommier for August 19th. We'll look into the areas where I still have pain and make sure everything is healing correctly. I have questions about the timing of the next surgery and whether it needs to be earlier. I have questions about the removal of the spleen and the next surgery. I have to have 3 injections/inoculations prior to the Nov 8 surgery and will need boosters of these antibodies indefinitely after the spleen is removed. These are for serious diseases that the spleen protects us from. My next 28 day Octreotide injection is on August 22. I'll probably get the inoculations on the same day.
Fun activities coming up include a visit with my girlfriend Shari in Hood River; and Becky and Jean in Tacoma and Lacey; my Dads 79th birthday dinner at Flying Squirrel Pizza this Friday; restorative yoga classes; lap swimming (to begin soon I hope); our (Peter and I) 10th anniversary trip August 10th to Cannon Beach; a wedding reception and b-day party for friends, an annual family reunion at Mason Lake in Shelton on August 18; a trip to Astoria following the Portland Dr. appointment on the 19th; and last but not least I hope to be able to go out on the boat by the end of August. I'm positive that all of this will be preparing me for that second surgery. :-) I hope everyone reading this is having a wonderful summer. Our weather has been glorious. Life is such a joy!
Education is not a preparation for life, it is life itself. - John Dewey (I am learning a lot about myself)
When I was younger I could remember anything, whether it had happened or not. - Mark Twain
Friendship is a word, the very sight of which in print makes the heart warm. - Augustine Birrell
Fun activities I've enjoyed in the last few weeks since posting include the Paul McCartney concert; possibly the best concert I've ever been to. We got there and left early, avoiding the crowds and I sat pretty still not dancing and standing. It was difficult for me physically but worth it. The next week I was delighted with fresh crab from one of Peters crabbing trips on the boat. He went out with his daughter Lauren and her boyfriend. I am still unable to take the movement of being on the boat. He has also had several fishing trips catching salmon that we've been enjoying for dinner.
Last weekend I went to Westport with Peter who went fishing. I was able to sit in the back seat with my feel propped up into the front seat. I prevented my ankles from swelling that way and my abs felt more relaxed. I loved visiting the ocean and walking slowly in the surf barefooted. I've loved the ocean since I was a child.
My mom completed a DVD of my childhood and gave it to me to watch this last month. It is fun and there are lots of pictures of all of us at the beach. It is fun to see the whole family in the 50's, 60's, 70's, 80's and 90's. Wow!
I had several CDSA meetings and visited the office. It was fun to see everyone. I miss my co-workers, board members and the CDSA community so much! After 21 years at CDSA it is very different for me not to be going in every day. My short term disability leave goes through September.
I went to a Mariners game (walked slowly to my seat, stayed there while Peter got us food and left early before the crowds). They lost of course but we had great seats, 4 rows up, by third base.
I've been doing a little gardening most days and my yard is colorful.
I've visited or been visited by my parents, my son, daughter, brother and his family, sister-in-law and her family, girlfriends; Sally, Louise, Molly, Rhonda, Maile and Wendy. Had many emails, phone calls and cards from other family members and friends.
I've cleaned out 2 closets and taken bins to consignment stores (didn't lift them all by myself) and donated several sacks of good household and clothes items. This clearing out and simplifying actually cheers me up and is something I can do that is not too challenging physically. I'm going to make it through all my closets and the garage eventually.
In discussing challenges it is good to note that my recovery is too far along for some of the most dangerous problems to occur. For instance I shouldn't now develop an abscess or most types of infections and nothing internally should rupture or tear causing internal bleeding. Inflammation and some fluid retention remains and increased pain at times can be from gas and bloating in the abdomen. Bending over to pick things up, turning or twisting, lifting anything even slightly heavy, walking up stairs and a host of other activities are still uncomfortable or not possible. I have been doing a little driving since I've been off the Oxycodone during the day. I am down to sometimes needing one at night. I take Ibuprofen every 4-6 hours. By 8 pm the accumulation of the days efforts often leaves me in enough pain that I want to take an Oxycodone. I could do less and rest more and perhaps I could lessen the evening pain. I find that even though I have great books, CD's and DVD's I am impatient to get up and get going. I'm glad that one of my good qualities is that I have a lot of energy and stamina. At times like this I really have to watch my natural instinct to go, go, go. I've had some dizzy spells and low blood sugar episodes but am getting better as my blood level increases. Just two weeks ago I was only at a blood level of 28 (normal is 36). A few days later when we did labs again I was already to 30 and I'm sure now I'm closer to normal. I'm taking iron and vitamin C now to help it absorb. That is one of the building blocks to make hemoglobin (blood). I lost a lot of blood in the surgery but didn't require a blood transfusion (the norm is to give a transfusion if you get down to the 20-21 range). That is why now I must build my blood level back up. The labs also showed increased liver function, although of course they show up as abnormal given the surgery. My liver is regenerating and everything else in my abdomen seems to be making changes and feels different of course than before surgery. I have a tight, full, hard feeling that is uncomfortable both around the scar and in the abdominal region in general. It is hard to describe. I found out that a piece of film/mesh was put in and left in to help guard against bowel obstruction and to keep things from adhering to each other that should not prior to the next surgery. This should make the next surgery scheduled for November 8th easier but may be causing soreness now. I noticed I'm about the same weight that I was prior to the surgery. I think I've lost some weight in my arms and legs but that the abdomen is larger and heavier. I'll ask about that in my next appointment.
I have scheduled an appointment with Dr. Pommier for August 19th. We'll look into the areas where I still have pain and make sure everything is healing correctly. I have questions about the timing of the next surgery and whether it needs to be earlier. I have questions about the removal of the spleen and the next surgery. I have to have 3 injections/inoculations prior to the Nov 8 surgery and will need boosters of these antibodies indefinitely after the spleen is removed. These are for serious diseases that the spleen protects us from. My next 28 day Octreotide injection is on August 22. I'll probably get the inoculations on the same day.
Fun activities coming up include a visit with my girlfriend Shari in Hood River; and Becky and Jean in Tacoma and Lacey; my Dads 79th birthday dinner at Flying Squirrel Pizza this Friday; restorative yoga classes; lap swimming (to begin soon I hope); our (Peter and I) 10th anniversary trip August 10th to Cannon Beach; a wedding reception and b-day party for friends, an annual family reunion at Mason Lake in Shelton on August 18; a trip to Astoria following the Portland Dr. appointment on the 19th; and last but not least I hope to be able to go out on the boat by the end of August. I'm positive that all of this will be preparing me for that second surgery. :-) I hope everyone reading this is having a wonderful summer. Our weather has been glorious. Life is such a joy!
Education is not a preparation for life, it is life itself. - John Dewey (I am learning a lot about myself)
When I was younger I could remember anything, whether it had happened or not. - Mark Twain
Friendship is a word, the very sight of which in print makes the heart warm. - Augustine Birrell
Thursday, July 18, 2013
Changed surgery to 11/8 pr-op 11/7
This way if Jessica is late going into labor I'll still be able to be there for her and the new baby girl! They are thinking of naming her Payton Lynn.
Feeling great this morning, doing a little yard work!!! I can tell I lost a little more fluid as I weighed less and my abdomen looks and feels smaller.
Feeling great this morning, doing a little yard work!!! I can tell I lost a little more fluid as I weighed less and my abdomen looks and feels smaller.
Wednesday, July 17, 2013
Staples and stitches removed; surgery scheduled
Last Monday 7/15, Peter drove me to Portland for our 1 week after surgery check up and stiches removal. We met with part of the Dr. Rodney Pommier surgical oncology team.
On the way to the appointment around 7:30 am I had a low blood sugar, hypoglycemic episode in the car. As soon as I felt the symptoms of sweating, shaking, feeling dizzy and blurred vision Peter got off of I-5 and stopped by a 7-11. We got bananas, crackers and juice. Although I had a yogurt (organic, low sugar from PCC) with fruit just before we left home and was still eating it in the car, I didn't have my usual 2 eggs for protein. Sometimes it is hard to remember all the symptoms and side effects of the tumors themselves and of PNET and of Octreotide; when paying so much attention to the pain medication and symptoms of healing and repairing my body from surgery. I still don't really know why it happened and I didn't bring my blood testing kit with me that morning so I was unable to confirm the low blood sugar numbers. Luckily we were near my moms house in Olympia and we were able to stop by and get the blood sugar regulated. Just being with her, sipping tea and being wrapped in her blankets and pillows seemed to cure me. After 30 minutes we were able to get back on the road to the appointment after thinking we might have to miss it because I did not feel I could make it to Portland in the car feeling like I was going to faint. I brought 3 of moms pillows and a blanket with me in the car even though I had my own pillows from home. She and dad also provided us with 2 "to go" cups; coffee for Peter and Green Tea for me. I have officially completely moved from coffee to tea after being so known for my love of coffee. I'm still using stevia and love the drops they sell at PCC. We were only a few minutes late for the appointment time. It was good thing we left so early. A big thanks to Peter and mom and dad for being there with me through the attack. It is scary and I didn't know whether to call 911 or drive to the hospital. I hate that feeling. I slept most of the way to Portland from there and felt fine by the time we arrived for the appointment.
Dr. Young (who is young) started off the appointment answering the page of questions I brought. Below are a few of the questions. He was one of the team of 3 that I saw every morning at 6:30 in the hospital. After discussing the questions and examining me he began removing the staples and stitches. He had to pull on a few which hurt a bit because they had started growing into the healing skin. The questions:
1. How much time generally does the liver take to recover and regenerate? What else can I do? He confirmed that the level of activity I described as being up much of the day but resting periodically was good. Every one's recovery time varies. It takes around 3 months for the liver to heal. I am doing really well, there is nothing else I can do but eat, rest, take the medication and relax.
2. What prep can I do, if any for the pancreas surgery? Describe surgery? We scheduled the surgery for Nov 1. Pommier will remove the tip of the tail of the pancreas, tissue and lymph nodes he saw that were involved and the spleen. I will need to have 3 vaccines before the surgery and will need to have boosters after the surgery because we are removing the spleen which typically handles certain dangerous diseases. There is nothing I can do to prepare except be healthy, recover and relax.
Dr. Pommier, who seemed busy going from room to room, dropped in to visit with us. He examined my scar and abdomen and said it looked good and that I looked strong. We scheduled the pre-op meeting for Halloween 10/31 and the surgery for 11/1. When Dr. Milas, the thyroid specialist, returns from a conference out of the country she will be in contact with me about figuring out the type of thyroid cancer I have. We may need to do another biopsy to get more tissue. The big thing now is to remove the primary. Oh and he said to eat everything doctors tell me not to eat, to gain weight for the next surgery.
Before we left for home we took cookies and treats to the RN's on my recovery floor. None of the ones that we knew were present but we left a nice card too. I'm very happy with my surgical team and the RN's at OHSU.
Our trip home was uneventful but we were able to stop in Vancouver and have crab with my parents and our old friend Dottie over looking the Columbia. They were on their way to Newport Oregon for a little get away. The drive in the car was tiring and I noticed the pain was up that evening. It was to be expected and in the days that have followed I've tried to rest. I've still got lots of energy, especially in the morning and can get carried away with activities. :-)
Jessica (my beautiful pregnant daughter) has been stopping by most afternoons on her way home from the UW. I've had some CDSA contact and all is well there. I've begun to try to taper off the narcotic pain meds but it may be a little too early for that. My body is letting me know when to rest and what to do all I have to do is listen.
On the way to the appointment around 7:30 am I had a low blood sugar, hypoglycemic episode in the car. As soon as I felt the symptoms of sweating, shaking, feeling dizzy and blurred vision Peter got off of I-5 and stopped by a 7-11. We got bananas, crackers and juice. Although I had a yogurt (organic, low sugar from PCC) with fruit just before we left home and was still eating it in the car, I didn't have my usual 2 eggs for protein. Sometimes it is hard to remember all the symptoms and side effects of the tumors themselves and of PNET and of Octreotide; when paying so much attention to the pain medication and symptoms of healing and repairing my body from surgery. I still don't really know why it happened and I didn't bring my blood testing kit with me that morning so I was unable to confirm the low blood sugar numbers. Luckily we were near my moms house in Olympia and we were able to stop by and get the blood sugar regulated. Just being with her, sipping tea and being wrapped in her blankets and pillows seemed to cure me. After 30 minutes we were able to get back on the road to the appointment after thinking we might have to miss it because I did not feel I could make it to Portland in the car feeling like I was going to faint. I brought 3 of moms pillows and a blanket with me in the car even though I had my own pillows from home. She and dad also provided us with 2 "to go" cups; coffee for Peter and Green Tea for me. I have officially completely moved from coffee to tea after being so known for my love of coffee. I'm still using stevia and love the drops they sell at PCC. We were only a few minutes late for the appointment time. It was good thing we left so early. A big thanks to Peter and mom and dad for being there with me through the attack. It is scary and I didn't know whether to call 911 or drive to the hospital. I hate that feeling. I slept most of the way to Portland from there and felt fine by the time we arrived for the appointment.
Dr. Young (who is young) started off the appointment answering the page of questions I brought. Below are a few of the questions. He was one of the team of 3 that I saw every morning at 6:30 in the hospital. After discussing the questions and examining me he began removing the staples and stitches. He had to pull on a few which hurt a bit because they had started growing into the healing skin. The questions:
1. How much time generally does the liver take to recover and regenerate? What else can I do? He confirmed that the level of activity I described as being up much of the day but resting periodically was good. Every one's recovery time varies. It takes around 3 months for the liver to heal. I am doing really well, there is nothing else I can do but eat, rest, take the medication and relax.
2. What prep can I do, if any for the pancreas surgery? Describe surgery? We scheduled the surgery for Nov 1. Pommier will remove the tip of the tail of the pancreas, tissue and lymph nodes he saw that were involved and the spleen. I will need to have 3 vaccines before the surgery and will need to have boosters after the surgery because we are removing the spleen which typically handles certain dangerous diseases. There is nothing I can do to prepare except be healthy, recover and relax.
3. Is SAA LAR 30 injection every 28 days keeping growth and spread from occurring now (Oct 2012 - present) or is this worsening metastases? MRI and CT in spring showed no growth. Octreotide scan reported growth. We believe the injections have stopped tumor growth and the primary from metastasizing. Therefor we could wait a month to do the surgery and it shouldn't matter. I might be ready in October but the Pommier team is very busy in October and I want to help with my daughter Jessica's delivery. Her due date is October 15th so I hope I get to be there for the birth and to help out the first few weeks before surgery. I may change the surgery to Nov 8th just to the give the baby girl another week to be late if she so decides.
4. Do you pick new small tumors in liver to monitor now? Frequency of monitoring; labs and MRI (every 3 months) Yes, after the next surgery we will set a new base line of tumors in the liver and begin to monitor them every 3 months with labs, MRI, CT's and other possible tools.
5. Did bone and thyroid metastases occur sometime before we began Octreotide in 10/12? Did it come from primary in pancreas? Do you think there is more cancer that I need to worry about elsewhere in my body? Yes, we think since we began Octreotide in October we have stopped all growth. Metastasizes came from the pancreas. It is best to focus in the next 2 surgeries and let LAR 30 continue to work. New water based forms of it are being developed that will be able to be injected with a smaller needle.
6. Is there lymph node involvement? Did you or will you remove any? Yes, we removed some last time and will need to remove more this time.
7. Is there reason to assume or believe I will have a “crisis” in the pancreas surgery like I did in the liver debulking surgery? The team will be prepared with Sandostatin and Octreotide drip. The anesthesiologists will be present and informed. There is no way of knowing if there will be a repeat of the crisis in my body.
8. Should we check the fluids in my system now chest/lungs? They listened to my lungs and they were clear; I have no signs of or symptoms of pneumonia. The additional fluids are still present in my abdomen but should be slowly reducing along with inflammation.
Before we left for home we took cookies and treats to the RN's on my recovery floor. None of the ones that we knew were present but we left a nice card too. I'm very happy with my surgical team and the RN's at OHSU.
Our trip home was uneventful but we were able to stop in Vancouver and have crab with my parents and our old friend Dottie over looking the Columbia. They were on their way to Newport Oregon for a little get away. The drive in the car was tiring and I noticed the pain was up that evening. It was to be expected and in the days that have followed I've tried to rest. I've still got lots of energy, especially in the morning and can get carried away with activities. :-)
Jessica (my beautiful pregnant daughter) has been stopping by most afternoons on her way home from the UW. I've had some CDSA contact and all is well there. I've begun to try to taper off the narcotic pain meds but it may be a little too early for that. My body is letting me know when to rest and what to do all I have to do is listen.
Saturday, July 13, 2013
Friday, July 12, 2013
Thank you to Peter, mom and dad, kids
Over the course of the last 2 weeks since the surgery my husband Peter has been critical to my getting to and surviving the surgery. He has driven me to appointments, to Portland, stayed up all night through out pain and to give medications. He has produced meals, cleaned house, talked to doctors, rubbed my back and done just about everything you could think of to support me through this process. He has been there since the diagnosis in October but the last 2 weeks really stand out as a commitment to love and kindness. Thank you Peter.
My parents have been daily companions on the phone, through cards, flowers and gifts and through getting huge numbers of people to pray for me through their church and friends churches. They stayed in Portland helping for about a week of the surgery time. Unfortunately dad went into the hospital with pneumonia shortly after their time supporting me. Happily he is now home recovering well. We have grown even closer during this time of continued support. Thank you mom and dad.
Thank you to Thaddeus and Jessica for coming to Portland, calling, visiting and supporting me.
I love all of you. Caryn
My parents have been daily companions on the phone, through cards, flowers and gifts and through getting huge numbers of people to pray for me through their church and friends churches. They stayed in Portland helping for about a week of the surgery time. Unfortunately dad went into the hospital with pneumonia shortly after their time supporting me. Happily he is now home recovering well. We have grown even closer during this time of continued support. Thank you mom and dad.
Thank you to Thaddeus and Jessica for coming to Portland, calling, visiting and supporting me.
I love all of you. Caryn
Post surgery; finally a blog post
Hello everyone,
I am sorry it has taken me this long to post! :-) I arrived home from surgery at OHSU Monday, July 8th, late in the afternoon but have not been able to sit and write physically till now 2 weeks after surgery. Lots of you have called and emailed to talk because you have not found updates here. Although the main point of the blog is to save me from describing my chapters of this journey over and over to well wishers; each of your calls, emails, cards and flowers has been a gift and a joy to receive. I have needed the personal human contact, no matter how brief, to keep from feeling isolated during this challenging recovery. Of course like every other step of the way so far, this chapter of "post surgery news" has been flooded with gifts and learning not just with pain.
I received many beautiful flower arrangements and cards in the hospital. Upon my return home, the same thing is happening, people bringing fresh flowers by from their gardens (hydrangeas' this year are beautiful), neighbors dropping by to help and cards arriving in the mailbox every day. It is so nice to get personal cards. I wonder how I can keep this going when I've returned to full health! :-)
The staff at CDSA continue to amaze me with their on-going thoughtfulness. My tribal canoe journey family has been sending genuine, thoughtful memories, and prayers as they set out this week. I miss being there but am glad others will have the opportunity. It was time for transition. I was there in spirit, a part of the morning prayer, where everyone is standing in the water holding onto the canoe (cedar) and each other before they take off. I felt their love and surprisingly feel grateful that I am in the right place at the right time in my life to prioritize caring for myself. A new interesting opportunity to help myself and others with NET/carcinoid came open just before the surgery.
I received a call from surgeon, Rodney Pommier; Oregon Health Sciences University, (OHSU) while I was at work on Wednesday June 26th two days before the scheduled surgery. I was trying to wrap up lots of details at CDSA when Dr. Pommier called to ask personally if I would participate in a "Clinical Trial" by arriving to Portland early than planned the next day, Thursday. I thought the content of the study sounded interesting and I like to help further learning, science and knowledge when I can, so I said yes to participating.
The title of the study is: Assessing the Impact of Surgical Debulking on Cognitive Function in Patients with Carcinoid Tumors. A part of my surgery was debulking (reducing the liver burden by removing tumors) in the liver. The principal investigator for the study is my very own surgeon: Pommier. The purpose of the study is to evaluate how carcinoid tumors affect cognitive function, or in other words, how the disease affects the way that participants (like me) think. Previous studies indicate that people with carcinoid (or P-NET) tumors feel that they have difficulty with concentration and memory after surgery. Patients have indicated they need more time allotted for anesthesia and pain meds to wear off and for recovery to fully take place before, for instance being expected to return to work. At the Pacific Northwest Carcinoid/NET Support Group meeting on June 22nd, that I attended, patients reported, in closed conversations, having some differences of opinions with their oncologists around this topic. Many doctors thought these symptoms following surgery had more to do with normal ageing brain functions in general than with stress or reaction on the body from surgery. Since then I've discussed the topic with a few RN's at OHSU and other hospital personnel. I think it is exciting that this controversial topic may soon have some data associated with it. There will be over 100 participants in the study. A small number in part due to the rare type of cancer we are treating. We certainly want to set post op patients up for success in their choice around timing and returning to work as well as identify any strategies to increase brain function following surgery. Confidentiality is critical in this study. Patient results and self reports, I assume would vary widely from person to person with age, over all health and other chronic conditions playing a role. The pain medication following surgery could have varied affects on individuals responding differently to everything from narcotics like oxycodone to ibuprofen. (I'm on both still). In an hour and a half interview, the day before my surgery, the co-investigator tested my cognitive function with a battery of surveys and tests. It tested memory, concentration, verbal processing and how I see the world around me. They will review my medical records to check the status of my cancer, medical dosing and response to therapy. I will have another interview in about 3 months for a pre and post comparison. Won't it be interesting to see where I am in 3 months time following this surgery and the results of the clinical trial?
The current surgery story begins on Friday 6/28 as my family and loved ones assembled in the family waiting room around 6 am at OHSU. Present was my husband Peter, mom and dad, son and daughter and son-in-law. Also present were my friends Shari from Hood River and Kurt from Portland. Once I said my good byes and was reeled off to surgery I didn't get to hear the reports coming later that day from Pommier to my family support team because I was still unconscious in recovery. I know Peter posted some notes here in the days following the surgery but others hearing Pommiers initial report can feel free to chime in about what he said regarding the success of the surgery.
The first thing I got to decide about the surgery in the prep room was to have an epidural. I am so glad I decided to go that route. It was put in after I was out (under anesthesia) for the day and while I have nothing to compare it to, it did a great job of managing much of the pain. A good thing about pain is the degree to which you forget about the intensity later. Suffice it to say that even though I consider myself to have a high pain tolerance this was by far the most physically painful experience of my life. I had my tonsils out when I was 12 and only remember getting to eat ice cream afterwards. I had both my children naturally without any pain medication in 1981 and 1983. So I've had very limited experiences, thankfully, with pain in my life. Nothing like stating the obvious here but still this surgery pain exceeded any imagination or thought I could have had about pain. It did help to do deep breathing and to try to keep the stress and anxiety as low as possible in my mind so as not to further tense up muscles in my body or cause infection. Other simple tools were employed to "just get by" for another hour or 15 minutes. Distraction can be a useful tool and talking about funny things like, delivering your grandchild or the orca whales in the San Juan's can be amazingly helpful. Some of the RN's shared stories with me to the degree that I felt like we were friends when their shifts ended. I learned a lot about trust and full surrender to others both known and unknown to me. I had to let go and give in knowing I couldn't do anything to help myself and that I was in good hands and that the outcome was worth the path being taken. I knew God was taking care of me through the actions of others. I let myself be cared for and really only once needed to advocated for myself around pain management. The vast majority of staff at OHSU including the RN's are an amazing group of skilled, empathetic professionals. I am still in awe of their attitude and depth of connection it seemed with each patient (or at least with me).
From what I heard, after the 6 hour surgery was complete Dr. Pommier met with my family team to report the successful results of the surgery. He let them know that I had a carcinoid/NET crisis at the beginning of the surgery that caused me to "flat line". I'm not entirely sure what that means but my blood pressure dropped quickly. There was a response from the surgical team that included an infusion of fluids that "brought me back" but later caused other fluid related problems like fluid in my lungs. The good news was that the primary cancer spot was found and the liver was able to be debulked; successfully removing 43 tumors. The gall bladder was removed. The bad news was that the primary was found to be in the pancreas and thus was not able to be removed in this surgery due to the dangers of operating on both the liver and pancreas at the same time. Another major surgery will be scheduled to remove the primary from the pancreas, I hope within the next few weeks or months.
The 3 days in the Intensive Care Unit (ICU) were the worst part of the hospital stay. I have very little memory of those days save for asking someone to please give me more pain medication and not being able to get it in what I considered a timely manor (40 minutes). This is probably the most common ICU issue. Thankfully my sister-in-law Linda, always a valuable advocate for our family members in the health care system, was able to speak to the issue and get it resolved almost immediately, getting me the pain meds. Linda and my brother Ed, gave me a beautiful blanket and pillow that was invaluable on the way home in the car this last Monday but I can barely remember them being there or giving it to me. Peter let me know who else visited in the ICU but the total lack of recall is an interesting feeling. Once in the hospital ward room vitals were taken every 2-4 hours (blood pressure, temp, heart rate, blood sugar level), pain medication given frequently, blood taken daily and IV's replaced time after time. Many of my veins had collapsed, causing in surgery an IV to be placed in my jugular, neck vein. I had 4-6 IV's running at any given time for the things that could not be mixed into the same vein. I needed oxygen for days. With fluids being given I didn't eat for about 8 days. I had a catheter for the first time and realized they don't hurt. As I neared the end of the 10 day hospital stay we began removing IV's and getting me up to walk. Moving from IV feeding to hard foods was challenging in that the inflammation, fluid retention, gas, bloating and swelling made it difficult to really get behind putting anything else in side my body. With no appetite or desire to eat I had to force myself to have one or 2 bites of food every couple of hours at least. My new body now without a gall bladder and with a tiny part left of the liver, was trying to learn how to manage what I was putting into the intestines and how to get it back out the other end. Narcotics are constipating and trying to have a bowel movement became the 3 day goal at one point, as we tried everything including stool softeners and increasing fluid intake. Small successes began to lead to bigger ones and we were up and walking the OHSU campus before we knew it.
Below is a description by Dr. Pommier on his summary notes:
"Ms. Swan, 56 year old female with neuroendocrine tumor metastasis to the liver who was admitted for hepatic wedge resections, left hepatic lobectomy and cholecystectomy. She tolerated the procedure well and was sent to ICU after for close monitoring with an epidural for pain. She was stable and later transferred to the ward. She was started on clear liquid diet and given oral and IV pain medications. She was later put on regular diet. At this time she was having some difficulty tolerating large meals and with pain control, had nausea and distension. After a few days of slowly advancing diet she was able to eat orally. Her epidural was removed and Toradol given for pain. She was taken off narcotics to improve return of bowel function. By hospital day 11 she was able to eat a full meal and have pain controlled with minimal narcotics. She was discharged home in good condition, with clinic follow up for staple (stitches) removal and discussion of future surgical medical plans. "
Procedures Performed while in hospital (also in his note section):
1. Exploratory laparoscopy
2. Intraoperative ultrasonography of the liver
3. Intraoperative ultrasonography of the pancreas
4. Left hepatic lobectomy
5. About 43 wedge resections of the right hepatic lobe including 25 wedge resections of the hepatic segment 5, 7, 11, 8
I'll tell you, even though I can't picture where these sections, resections and segments are in my abdomen it looks and feels a lot different. The scar, complete with staples is a sight to behold. Each day I am getting stronger and have managed to avoid the main risks upon returning home which include but are not limited to:
1. Edema of the legs and feet which includes the risk of blood clots. I am sleeping with my feet above my heart and keeping my legs and feet up most of the day. There is a continued reduction of swelling.
2. Fluid in my lungs that could lead to pneumonia. I am breathing on a little gadget I brought home from the hospital. Taking deep breaths, I have no wheezing, coughing or pain while breathing.
3. I must watch that my fever remains below 100. 5 (on Tuesday it jumped to 101.3) or get myself into the emergency room for x-rays of the lungs and internal organs. All infections are dangerous. We take my temp several times through out the day. Peter likes to help with this aspect as well as the timing of the pain medication and documentation.
4. I must keep my head above my heart at all times so sleeping is funny with both my head and feet above my heart.
5. I must protect the incision by not lifting anything and not driving or overly exerting myself.
6. We continue to work on reducing the bloating and fluid in the abdomen and eating, urinating and having bowel movements. It sounds simple but is really challenging it seems for the body to repair and regenerate and regulate these basic functions. I probably have about 20-25 pounds remaining of fluid from the surgery that will eventually leave my body. That is the main cause of continued pain.
Today on the 2 week anniversary of the surgery I can confidently say I am getting better and stronger every day. Friends and family have kept me laughing and entertained as well as disciplined about getting sleep and rest so that the body can repair and liver can regenerate. Thanks for your continued prayers I feel them everyday.
I will report back after my appointment next Monday at 10:15 with Pommier at OHSU where we will remove the stitches. Perhaps I'll even know the date of the next surgery. With much love and gratitude.......
I am sorry it has taken me this long to post! :-) I arrived home from surgery at OHSU Monday, July 8th, late in the afternoon but have not been able to sit and write physically till now 2 weeks after surgery. Lots of you have called and emailed to talk because you have not found updates here. Although the main point of the blog is to save me from describing my chapters of this journey over and over to well wishers; each of your calls, emails, cards and flowers has been a gift and a joy to receive. I have needed the personal human contact, no matter how brief, to keep from feeling isolated during this challenging recovery. Of course like every other step of the way so far, this chapter of "post surgery news" has been flooded with gifts and learning not just with pain.
I received many beautiful flower arrangements and cards in the hospital. Upon my return home, the same thing is happening, people bringing fresh flowers by from their gardens (hydrangeas' this year are beautiful), neighbors dropping by to help and cards arriving in the mailbox every day. It is so nice to get personal cards. I wonder how I can keep this going when I've returned to full health! :-)
The staff at CDSA continue to amaze me with their on-going thoughtfulness. My tribal canoe journey family has been sending genuine, thoughtful memories, and prayers as they set out this week. I miss being there but am glad others will have the opportunity. It was time for transition. I was there in spirit, a part of the morning prayer, where everyone is standing in the water holding onto the canoe (cedar) and each other before they take off. I felt their love and surprisingly feel grateful that I am in the right place at the right time in my life to prioritize caring for myself. A new interesting opportunity to help myself and others with NET/carcinoid came open just before the surgery.
I received a call from surgeon, Rodney Pommier; Oregon Health Sciences University, (OHSU) while I was at work on Wednesday June 26th two days before the scheduled surgery. I was trying to wrap up lots of details at CDSA when Dr. Pommier called to ask personally if I would participate in a "Clinical Trial" by arriving to Portland early than planned the next day, Thursday. I thought the content of the study sounded interesting and I like to help further learning, science and knowledge when I can, so I said yes to participating.
The title of the study is: Assessing the Impact of Surgical Debulking on Cognitive Function in Patients with Carcinoid Tumors. A part of my surgery was debulking (reducing the liver burden by removing tumors) in the liver. The principal investigator for the study is my very own surgeon: Pommier. The purpose of the study is to evaluate how carcinoid tumors affect cognitive function, or in other words, how the disease affects the way that participants (like me) think. Previous studies indicate that people with carcinoid (or P-NET) tumors feel that they have difficulty with concentration and memory after surgery. Patients have indicated they need more time allotted for anesthesia and pain meds to wear off and for recovery to fully take place before, for instance being expected to return to work. At the Pacific Northwest Carcinoid/NET Support Group meeting on June 22nd, that I attended, patients reported, in closed conversations, having some differences of opinions with their oncologists around this topic. Many doctors thought these symptoms following surgery had more to do with normal ageing brain functions in general than with stress or reaction on the body from surgery. Since then I've discussed the topic with a few RN's at OHSU and other hospital personnel. I think it is exciting that this controversial topic may soon have some data associated with it. There will be over 100 participants in the study. A small number in part due to the rare type of cancer we are treating. We certainly want to set post op patients up for success in their choice around timing and returning to work as well as identify any strategies to increase brain function following surgery. Confidentiality is critical in this study. Patient results and self reports, I assume would vary widely from person to person with age, over all health and other chronic conditions playing a role. The pain medication following surgery could have varied affects on individuals responding differently to everything from narcotics like oxycodone to ibuprofen. (I'm on both still). In an hour and a half interview, the day before my surgery, the co-investigator tested my cognitive function with a battery of surveys and tests. It tested memory, concentration, verbal processing and how I see the world around me. They will review my medical records to check the status of my cancer, medical dosing and response to therapy. I will have another interview in about 3 months for a pre and post comparison. Won't it be interesting to see where I am in 3 months time following this surgery and the results of the clinical trial?
The current surgery story begins on Friday 6/28 as my family and loved ones assembled in the family waiting room around 6 am at OHSU. Present was my husband Peter, mom and dad, son and daughter and son-in-law. Also present were my friends Shari from Hood River and Kurt from Portland. Once I said my good byes and was reeled off to surgery I didn't get to hear the reports coming later that day from Pommier to my family support team because I was still unconscious in recovery. I know Peter posted some notes here in the days following the surgery but others hearing Pommiers initial report can feel free to chime in about what he said regarding the success of the surgery.
The first thing I got to decide about the surgery in the prep room was to have an epidural. I am so glad I decided to go that route. It was put in after I was out (under anesthesia) for the day and while I have nothing to compare it to, it did a great job of managing much of the pain. A good thing about pain is the degree to which you forget about the intensity later. Suffice it to say that even though I consider myself to have a high pain tolerance this was by far the most physically painful experience of my life. I had my tonsils out when I was 12 and only remember getting to eat ice cream afterwards. I had both my children naturally without any pain medication in 1981 and 1983. So I've had very limited experiences, thankfully, with pain in my life. Nothing like stating the obvious here but still this surgery pain exceeded any imagination or thought I could have had about pain. It did help to do deep breathing and to try to keep the stress and anxiety as low as possible in my mind so as not to further tense up muscles in my body or cause infection. Other simple tools were employed to "just get by" for another hour or 15 minutes. Distraction can be a useful tool and talking about funny things like, delivering your grandchild or the orca whales in the San Juan's can be amazingly helpful. Some of the RN's shared stories with me to the degree that I felt like we were friends when their shifts ended. I learned a lot about trust and full surrender to others both known and unknown to me. I had to let go and give in knowing I couldn't do anything to help myself and that I was in good hands and that the outcome was worth the path being taken. I knew God was taking care of me through the actions of others. I let myself be cared for and really only once needed to advocated for myself around pain management. The vast majority of staff at OHSU including the RN's are an amazing group of skilled, empathetic professionals. I am still in awe of their attitude and depth of connection it seemed with each patient (or at least with me).
From what I heard, after the 6 hour surgery was complete Dr. Pommier met with my family team to report the successful results of the surgery. He let them know that I had a carcinoid/NET crisis at the beginning of the surgery that caused me to "flat line". I'm not entirely sure what that means but my blood pressure dropped quickly. There was a response from the surgical team that included an infusion of fluids that "brought me back" but later caused other fluid related problems like fluid in my lungs. The good news was that the primary cancer spot was found and the liver was able to be debulked; successfully removing 43 tumors. The gall bladder was removed. The bad news was that the primary was found to be in the pancreas and thus was not able to be removed in this surgery due to the dangers of operating on both the liver and pancreas at the same time. Another major surgery will be scheduled to remove the primary from the pancreas, I hope within the next few weeks or months.
The 3 days in the Intensive Care Unit (ICU) were the worst part of the hospital stay. I have very little memory of those days save for asking someone to please give me more pain medication and not being able to get it in what I considered a timely manor (40 minutes). This is probably the most common ICU issue. Thankfully my sister-in-law Linda, always a valuable advocate for our family members in the health care system, was able to speak to the issue and get it resolved almost immediately, getting me the pain meds. Linda and my brother Ed, gave me a beautiful blanket and pillow that was invaluable on the way home in the car this last Monday but I can barely remember them being there or giving it to me. Peter let me know who else visited in the ICU but the total lack of recall is an interesting feeling. Once in the hospital ward room vitals were taken every 2-4 hours (blood pressure, temp, heart rate, blood sugar level), pain medication given frequently, blood taken daily and IV's replaced time after time. Many of my veins had collapsed, causing in surgery an IV to be placed in my jugular, neck vein. I had 4-6 IV's running at any given time for the things that could not be mixed into the same vein. I needed oxygen for days. With fluids being given I didn't eat for about 8 days. I had a catheter for the first time and realized they don't hurt. As I neared the end of the 10 day hospital stay we began removing IV's and getting me up to walk. Moving from IV feeding to hard foods was challenging in that the inflammation, fluid retention, gas, bloating and swelling made it difficult to really get behind putting anything else in side my body. With no appetite or desire to eat I had to force myself to have one or 2 bites of food every couple of hours at least. My new body now without a gall bladder and with a tiny part left of the liver, was trying to learn how to manage what I was putting into the intestines and how to get it back out the other end. Narcotics are constipating and trying to have a bowel movement became the 3 day goal at one point, as we tried everything including stool softeners and increasing fluid intake. Small successes began to lead to bigger ones and we were up and walking the OHSU campus before we knew it.
Below is a description by Dr. Pommier on his summary notes:
"Ms. Swan, 56 year old female with neuroendocrine tumor metastasis to the liver who was admitted for hepatic wedge resections, left hepatic lobectomy and cholecystectomy. She tolerated the procedure well and was sent to ICU after for close monitoring with an epidural for pain. She was stable and later transferred to the ward. She was started on clear liquid diet and given oral and IV pain medications. She was later put on regular diet. At this time she was having some difficulty tolerating large meals and with pain control, had nausea and distension. After a few days of slowly advancing diet she was able to eat orally. Her epidural was removed and Toradol given for pain. She was taken off narcotics to improve return of bowel function. By hospital day 11 she was able to eat a full meal and have pain controlled with minimal narcotics. She was discharged home in good condition, with clinic follow up for staple (stitches) removal and discussion of future surgical medical plans. "
Procedures Performed while in hospital (also in his note section):
1. Exploratory laparoscopy
2. Intraoperative ultrasonography of the liver
3. Intraoperative ultrasonography of the pancreas
4. Left hepatic lobectomy
5. About 43 wedge resections of the right hepatic lobe including 25 wedge resections of the hepatic segment 5, 7, 11, 8
I'll tell you, even though I can't picture where these sections, resections and segments are in my abdomen it looks and feels a lot different. The scar, complete with staples is a sight to behold. Each day I am getting stronger and have managed to avoid the main risks upon returning home which include but are not limited to:
1. Edema of the legs and feet which includes the risk of blood clots. I am sleeping with my feet above my heart and keeping my legs and feet up most of the day. There is a continued reduction of swelling.
2. Fluid in my lungs that could lead to pneumonia. I am breathing on a little gadget I brought home from the hospital. Taking deep breaths, I have no wheezing, coughing or pain while breathing.
3. I must watch that my fever remains below 100. 5 (on Tuesday it jumped to 101.3) or get myself into the emergency room for x-rays of the lungs and internal organs. All infections are dangerous. We take my temp several times through out the day. Peter likes to help with this aspect as well as the timing of the pain medication and documentation.
4. I must keep my head above my heart at all times so sleeping is funny with both my head and feet above my heart.
5. I must protect the incision by not lifting anything and not driving or overly exerting myself.
6. We continue to work on reducing the bloating and fluid in the abdomen and eating, urinating and having bowel movements. It sounds simple but is really challenging it seems for the body to repair and regenerate and regulate these basic functions. I probably have about 20-25 pounds remaining of fluid from the surgery that will eventually leave my body. That is the main cause of continued pain.
Today on the 2 week anniversary of the surgery I can confidently say I am getting better and stronger every day. Friends and family have kept me laughing and entertained as well as disciplined about getting sleep and rest so that the body can repair and liver can regenerate. Thanks for your continued prayers I feel them everyday.
I will report back after my appointment next Monday at 10:15 with Pommier at OHSU where we will remove the stitches. Perhaps I'll even know the date of the next surgery. With much love and gratitude.......
Sunday, June 30, 2013
2 days post-surgery
Peter here: It's now Sunday, two days after her surgery. Caryn is resting comfortably, waiting to be moved to her "regular" hospital room. Yes, she gets to leave the ICU!
The past two days have had their moments but for the most part, Caryn has done remarkably well. She had two of what I would call "pain episodes" where she experienced excruciating pain in her abdomen, in the area where the surgery was done. I'm sure she will explain it from her side when she feels better but this severe pain caused a extreme tightening of her abdomen, which affected her lungs and her ability to breathe. It was very scary, especially the first time. Caryn was able to get through these episodes with controlled breathing and additional pain medication. She's a real trooper.
Other than these episodes, she's been trying to manage the pain with very little sleep in tbe ICU. It's been very difficult with all the poking, prodding, noise, wires and IV lines all around. Finally, she seems to have come to a good place with the proper pain medication and sleeping position where she has been sleeping quite well this afternoon. I anticipate the move to the regular room to be more restful and more active for her. They want her to start sitting more and even walking to the bathroom. No more catheter.
Her mood and demeanor has been quite positive despite all she has been through. This should be no surprise. We're not sure when she'll be released, it all depends on how quickly she recovers. I'll keep you posted. Keep those kind words and well wishes coming, they're greatly appreciated.
Peter
The past two days have had their moments but for the most part, Caryn has done remarkably well. She had two of what I would call "pain episodes" where she experienced excruciating pain in her abdomen, in the area where the surgery was done. I'm sure she will explain it from her side when she feels better but this severe pain caused a extreme tightening of her abdomen, which affected her lungs and her ability to breathe. It was very scary, especially the first time. Caryn was able to get through these episodes with controlled breathing and additional pain medication. She's a real trooper.
Other than these episodes, she's been trying to manage the pain with very little sleep in tbe ICU. It's been very difficult with all the poking, prodding, noise, wires and IV lines all around. Finally, she seems to have come to a good place with the proper pain medication and sleeping position where she has been sleeping quite well this afternoon. I anticipate the move to the regular room to be more restful and more active for her. They want her to start sitting more and even walking to the bathroom. No more catheter.
Her mood and demeanor has been quite positive despite all she has been through. This should be no surprise. We're not sure when she'll be released, it all depends on how quickly she recovers. I'll keep you posted. Keep those kind words and well wishes coming, they're greatly appreciated.
Peter
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| View of Mt Hood from Caryn's hospital room. It's a very beautiful hospital! |
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