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. 

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.

 

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. 

 

 

Deep down in the human spirit there is a reservoir of courage. It is always available, always waiting to be discovered.     Pema Chodren

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

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.......

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

View of Mt Hood from Caryn's hospital room.  It's a very beautiful hospital!

Successful surgery

This is Peter at approximately 5:30 on Friday, the day of her surgery. 

Great news!  Caryn came through the surgery with flying colors!!  We just spoke to Dr. Pommier and the surgery was very successful. 

He was able to find the primary tumor in the tail of the Pancreas which is very important. However she will need to have another surgery to remove the tail and neck of the Pancreas and the spleen.  But that will be in 3 or 4 months after she's fully recovered from this surgery. 

Dr P was also able to remove at least 90% of the tumors in both lobes of the liver!!  This is great news! He also had to remove the gall bladder which is standard for NET patients. Plus Caryn did not lose any blood. 

All in all, it has been a very successful procedure. Thank you all so much for your love, kind words of support, your thoughts and prayers. Our prayers have been answered!

Support Group; surgery Friday

Went to my first support group meeting yesterday for people with NET/Carcinoma. Lots of different stories were presented from the 30 or so in attendance. Several people had the same operation I am having with Dr. Pommier in just a few days. Some surgeries were 10 hours in length. One guy had 50 tumors removed. Others described laparoscopic (through the belly button) compared to stitches across the abdomen for larger liver surgeries. One nice guy from Salem said he was happy to see a large scar across his middle when he awoke because he knew they were able to do surgery on his liver. He has a large bell shaped scar that starts on one side of the body at the rib cage and travels across to the other. His sounded the most similar to mine in that it was unknown primary with heavy liver burden.  People have done a variety of treatments and different types of surgeries with names I couldn't pronounce let alone write down in my notes to share with all of you. Some people were diagnosed 6 months ago like me, others were describing journeys with 10-15 years worth of managing the disease. There was a discussion about how MRI's are 20% more accurate than CT scans and they don't involve the radiation that CT's do. It was advised that we cancer patients try to get less radiation and decline CT's when they are suggested for us, requesting a MRI instead even though they are more expensive for the health provider. There is a new scan, Gallium 68, becoming available that can see tumors and primaries that are much smaller (1 cm) than what the CT scans, PET scans and MRI and Octreotide scan can see. The liver tumors we can see are 4-5 cm. The new scan will be really helpful for people like me with unknown primaries. The only place to get it in the US is Nashville for now. A Dr. Lu there is building a NET clinic that specialized in NET/Carcinoids similar to Dr. Woltering's clinic in New Orleans. Lot's of clinical trials were described for new treatment drugs.  It was neat the Dr. Park at SCCA had done one persons surgery and Flavio Rocha from Virginia Mason (VMMC) an other's. They were both second opinion surgeons that deemed my liver stage 4 inoperable. Four people at the event had Dr. Feldman at GH as their main oncologist. Several people were asymptomatic while others had severe diarrhea, flushing, wheezing, sores in the mouth and rash's.  Weight loss and fatigue were issues to manage for most. I am very lucky that I am practically symptom free. Actually it isn't all luck since several others said if they ate a high protein, low sugar diet they experienced less symptoms. That has been my experience.

Most exciting was that the experts at the meeting believed that there is a huge push from Doctors in the US and Canada and drug companies to move forward on research with NET/Carcinoma. There is new research going on at many US colleges.

Today I'm staying home because unfortunately I caught a cold and it has gone into my ear. I swam 50 laps yesterday, crawl stroke, but got some water in my right ear. It is still blocked, ringing and sore. I may go in to see my primary care doc tomorrow to see if we can get the ear open prior to surgery.

I have arranged for the mail to be brought in and yard watered. The hotel is all arranged for the family.

This week I should hear more abut the thyroid but it isn't as important as the liver so on to the surgery we go. I'm working through Wednesday and have a CDSA board meeting on Tuesday.


 I've asked Peter to post the results from the surgery when he hears them from the doctors on Friday. Those of you checking the blog might find out before I do if they were able to find the primary or remove tumors from the liver. :-)

Still unknown thyroid cancer type

Below is the email from Dr. Feldman today. The lab results were again inconclusive on the type of cancer in the thyroid. I got the 24 hour urine screen instructions but can't start it till Thursday because you can't have had banana's, tomatoes, pineapple, caffeine and a host of other foods for 3 days prior to beginning the urinary screen test. Basically you catch all urine for a 24 hour period, keep it in a special jug in the fridge and turn it in right away. This morning before I knew the instructions I had a banana and caffeine in Green Tea. The sample turned in on Thursday should result by Tuesday with enough time to inform Dr. Pommier (Portland OHSU surgeon) before Friday's surgery.

 

Ms. Swan,
So far the thyroid biopsy has come back equivocal for either spread of carcinoid or medullary cancer. Given that surgery is coming up soon, I would like you to due a 24 hour urinary to screen for the the third tumor in that triad, pheochromocytoma. I will place the order. More pathology analysis is pending on the biopsy.
Eric

 

By the way, Dr. Eric Feldman, my Group Health Oncologist,  was listed as one of Seattle's Best Doctors (Cancer Specialist; Oncology; all types of cancer and blood disorders) in the July 2013 issue of Seattle magazine.

 

Peter and I joined the Lakeridge swim club a couple weeks ago. I have enjoyed swimming laps again in a nice outdoor heated pool. I'm swimming 40 laps of the crawl stroke without stopping! I've been walking 3 miles a day several days a week and continue to get strong for surgery. I've seen a new alternative health practitioner around nutrition, supplements and healing named Suzanne Jennings in W. Seattle. She has a great spa in her home with sauna and soaking tubs. It has been very relaxing to go to her and has also increased my energy levels.

 

On Friday I was able to hear Eben Alexander, NY Times best selling author of, Proof of Heaven, at Center for Spiritual Learning (CSL). He is a neurosurgeon that had a near death experience while being in a coma for 7 days. It was really interesting.

 

At work it is a very busy time of year. Our summer program began today at 9 elementary schools for 3-12 year olds. We have a special curriculum designed to reduce summer learning loss. In this last week before surgery I'll be wrapping up projects at work (the end of our fiscal year is June 30) and spending time with family. Several friends have offered to help water plants while we're in Portland and to help with other things when we return and I'm recovering from surgery. Hotel reservations for Peter and my mom and dad have been made.

 

I hope to visit my son Thaddeus' family and hold new baby Ayana in the next few days. My wonderful Grandson Kimani is the new big brother and doing a great job too.

 

Next Saturday I will attend my first support group function for people with NET. I know it will be really informative. Over 50 people are expected to attend from as far away as Salem, Oregon.

2 biopsy's result

Yesterday I learned from Dr. Feldman at Group Health that the 2 biopsy's performed on Thursday resulted as cancerous. The bone biopsy in the left hip region is a fairly small area that can not be removed. It will have to be monitored for growth along with the tumors in the liver and hopefully the Octreotide (SAA LAR 30) injected every 28 days will keep the bone area from growing or spreading.

The thyroid tissue from the biopsy has been sent to a lab outside of GH for review. GH could not determine what type of cancer it was or if it is related to the NET/ Neuroendocrine Islet cell Carcinoma that has metastasized into the liver and bone. The lab will tell us the calcitonan level. If it is calcitonan positive we can do a para thyroid hormone test (24 hour urine collection with food restrictions).  It could be Pheocytochroatoma a type of thyroid cancer. We'll have to wait until Thur when results come back from the lab to see if it is a kind of cancer that causes high blood pressure in surgeries. If so we'll alert the anaesthesiologist in Portland. The thyroid can be removed but the surgery of the liver would come first, then of the pancreas potentially if that is determined to be the primary (separate surgery after I've recovered from the liver surgery). Then a third surgery could be removal of the thyroid. We haven't gotten that far and I haven't done research on my own around any of this new information.

Dr Feldman thinks I have worsening metastases, that the tumors are growing and that we should consider moving onto another treatment type. These would have quality of life issues associated with them.

Thankfully, I met with Dr. Bach at Cancer Care Alliance (SCCA) later in the day. We believe that the MRI and CT scan that showed no liver growth were accurate and that the Octreotide scan that showed tumor progression is not a good scan to measure tumor growth. There are too many variable factors. My Cromogranin levels are staying ok, another sign it isn't worsening. Feldman and GH tend to  think surgery in my case is still very controversial because the gold star of approval from a double blind clinical trial has yet to occur in the US. Woltering and Pommier agree on the same plan and Dr. Bach concurs.

Dr. Feldman sent the referral through to GH customer and financial services for the surgery last week. I'll be talking on the phone with them tomorrow about progress they've made and a timeline for a decision since 6/28 is only 17 days away.

On a happier note I got to help deliver my first granddaughter on Friday night. When my daughter in law called to say her water broke, we rushed over and I helped deliver the baby 35 minutes later. I saw her take her first breath and open her eyes for the first time. She is beautiful and the whole family is doing well.

Portland appointment with Pommier

On Monday June 3, Peter and I met with Dr. Pommier in Portland for the first time. The OHSU (Oregon Health and Sciences University) campus is really beautiful. We got to ride in the tram which goes from the lower to upper campus and has a beautiful view of the City of Portland and the mountains. (I'll post pictures) Dr. Pommier gave an educational over view of NET/Carcinoid tumors. We learned that he had produced an excellent youtube video, which we later watched, about NET/Carciniod syndrome. If you're interested you should be able to find it. He has also produced an informative DVD for patients to take home. We found it very helpful and patient oriented including a brief nutrition section.
After what we thought was a careful review of my medical history presented in scans, labs, CD's and reports, an interview with me and a physical examination; Pommier gave us his recommendation. He described the need to find the primary source of cancer and how looking with the eye during surgery provides a better chance at finding it than continued MRI, Octreotide, CT scans and tests. He is able to find the unknown primary 80% of the time and often within 6 seconds. He thinks it might be in the bowel or intestines. Colonoscopies often don't find primaries in the bowel because it goes inside to look while often NET's sit on the outside wall. He has found them wrapped up in the upper and lower intestines as well, in places impossible to see in scans. During the surgery he will debulk the liver (also called resection). He plans to remove the largest mass in the left lobe of the liver, the big one in the right lobe and any others he can get to. He will not be able to get 100% of the tumors out of the liver. With these slow growing tumors it can be years before the small ones, we are unable to remove, become large enough to be considered for removal. Since I have responded well to the treatment of Octreotide (SAA LAR 30) given every 28 days by injection to the rump muscle, it may be 3-5 years to tumor progression or even10 years until the tumors left behind grow. The tumors have not grown in the last 7 months since we discovered them due to Octreotide. We will continue with the Octreotide indefinitely. After surgery we will monitor for growth every 3 months through labs and 6 months through scans. While in surgery he will remove the gallbladder because long term use of Octreotide causes gallstones. A good prayer to say for me is that they will find the primary and remove it and that the liver will be resectable. In some cases when the liver is opened up it is deemed to be inoperable because there are freckles of tumors, meaning many small ones covering the liver. Dr. Pommier doesn't think mine looks like freckles from the scans. This is a 6-8 hour surgery depending on what they find when they get in there.  We have scheduled surgery for Friday, June 28. It will include 3 days in the ICU and a week in the hospital. Peter will drive me home for the 6-8 week recovery period. He and my parents will stay in a hotel near the hospital. Both my children plan to be there for the surgery. Several friends have said they'll come visit me on that big day and/or through out the week. I know I'll be surrounded by love from all of  you far and near.

Now I begin the work of making sure Group Health (GH) will pay for the surgry and hospital stay. I'll get that process completed in the 3 weeks before the surgery. Monday the 10th I have appointments with Dr. Feldman (GH) and Dr. Back (SCCA). I'll bring them up to speed on the plan with Pommier. Dr. Feldman's staff should be able to help me get the paperwork with customer services going.

Yesterday the biopsy's of the thyroid and left hip bone were completed. My parents and Peter accompanied me. They will result next week. I'm glad that part is over. I may be able to go the next few weeks without being poked with needles too much. What a luxery that is these days. I plan on enjoying the next 3 weeks and working at CDSA. I'll take a short term disability leave from work for 60-90 days. I'll be collecting good movies, books and CD's for the recovery period. Feel free to give me recommendations. I guess I'll have time to write in the blog. :-)