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. :-)