NET Cancer Awareness Day in Utah

We were thrilled to finally have NET Cancer Awareness Day recognized here in Utah.  Thanks to many of the members of our support group who helped make this happen.

Patty and Sharon were able to draft the declaration and submit it to the governor's office for him to sign.  Dan had some contacts in the BYU Athletic Office that he went through to arrange the interview with Coach Rose.  My friend, TV reporter Dan Rascon, was willing to do a story on NET Cancer Awareness Day that aired on KUTV Channel 2 News.  Its amazing how things can come together when so many people are jointly motivated in a great cause!

Hopefully, as more and more people become aware of this type of cancer, funding will increase, more treatments will become available, those who suffer with this disease will be diagnosed correctly in a timely manner, those who are told there is nothing that can be done for them will be able to learn more about what treatments are actually available to them, and life expectancy and quality of life will increase.

A huge thank you to BYU's basketball coach Dave Rose, Dan Rascon, KUTV News, and the members of our support group who did so much to get this story on the air.  We are really excited about it!  Here is the link to the story:

http://www.kutv.com/features/features/inside-the-story/stories/Inside-the-Story-BYU-coach-cancer-battle-56691.shtml#.VGOZXj90yUn

We feel so blessed that Merlynn continues to feel well.  We were worried for a while that perhaps we had been misguided in doing the radioembolization, but after several months of seeing no change, Mer's latest MRI did show that some of his tumors have shrunk and no new tumors were identified.  Life is good!

 

Y-90 Time: My Husband is Hot!

I haven't posted for a while because there hasn't been much to report.  For  nearly two years, Merlynn's liver tumors remained “stable”.  Slowly, over the past few months however, the marker numbers on his blood tests started to trend upwards, and when he received his latest MRI, we discovered as we'd expected that most of his tumors have started to grow again.  Some of them have grown significantly.

 

Merlynn decided it was time to act. 

 

During our Utah Carcinoid Cancer Support Group meeting last May, we heard from an interventional radiologist named Dr. James Carlisle.  He told us about a procedure called radioembolization which involves placing millions of microscopic radioactive resin beads, called SIR-Spheres which are bonded with Yttrium-90, into the liver through the hepatic artery.  If done correctly, the beads settle in next to and deep within the liver tumors.  The radiation kills or shrinks those tumors without harming the good parts of the liver.  The beads lose most of their radiation after about 3 days but remain permanently in place in the liver.    

 

Mer with Dr. James Carlisle at our support group meeting in May

 

After a few weeks of preparation, where Dr. Carlisle "mapped" Merlynn's liver so he knew where each of his arteries went, Mer had the procedure done on his right liver lobe yesterday.  This is an outpatient procedure; but as expected, he is pretty hammered today and will be for the next couple of weeks.  We feel everything went well though and will wait to see how the scans and marker labs look in a month.  If the procedure was successful, he will have the left lobe of his liver done in about two months. 

Merlynn right before the procedure

 

 

Because of Merlynn's occupation in environmental health, he was able to borrow a Geiger Counter from his former employer.  Here is a little video we filmed when we got home last night.  No wonder we were advised not to get within 3 feet of each other for the next 3-4 days!

 

 

 

 

If you are a carcinoid cancer patient or know someone who is, you may be interested in learning more about the radioembolization procedure. Here are some good articles:

For general information:

 http://www.sciencedaily.com/releases/2011/03/110328092409.htm

For more specific and detailed information:
http://www.sirweb.org/clinical/cpg/REBOC.pdf

 

Support Group Success!

I'm a little slow in blogging about this, but we were thrilled with the turn out for our first Utah Carcinoid Cancer Support Group Meeting on March 13.  Thirteen people attended, and considering the rarity of neuroendocrine tumors, we feel this is a great beginning.

Merlynn did a nice job of conducting the meeting and shared some good information.  He gave out binders with charts and other pages which could help the members keep track of their test results, etc.

We're grateful to have met so many new friends and feel blessed to rub shoulders with such remarkable people.  We quickly realized that so many others are struggling with this disease a lot more than we are, and they shared such amazing stories of courage and strength.  We left feeling very uplifted and with a great deal of love for each of them.

We're so thankful that the additional tests Merlynn had this month continue to show us his tumors are stable. 

We're looking forward to our next support group meeting in May and hope we can somehow bring strength, knowledge, and comfort to others.

Good Health, Good News, and Good Work!

We're so happy to report that Merlynn continues to feel terrific, and all of his recent tests and scans came back showing no significant growth or change in his tumors during the past year.  We feel so blessed!

The doctors previously thought the tumor on his pancreas must be the primary, but on last month's octreoscan it didn't "light up".  That means it probably isn't a carcinoid tumor.  Although this is good news, it means his primary tumor still hasn't been found.

Merlynn has devoted many, many hours to studying carcinoid cancer and neuroendocrine tumors.  I really believe he now knows more than most of the doctors in our area.  We feel we're ready to help others who have this awful disease, and we feel we can learn from them as well, so we're starting the first support group for carcinoid cancer in Utah.  We've met or spoken with several people who have helped us set it up, and our group is now listed on many cancer websites and other information sources.  Our first meeting will be at the Intemountain Medical Center on March 13.  It's been interesting to hear from several people from other states who have wanted to help, and so far, three people have signed up to join our group.  Here's the information as it's been published:

If you or a loved one has been diagnosed with carcinoid/NETs or have an interest in learning more, you are invited to join our Utah Carcinoid Cancer Support Group. We will meet beginning March 13 from 6 - 8 pm and continue to meet the second Wednesday of May, July, September and November at the Intermountain Medical Center Campus in Murray. Click here, http://www.carcinoid.org/support/support-groups/directory, for contact information. Please check the Utah listing to register for the new group.

We had fun designing a logo for our support group.  We wanted to use Delicate Arch in our logo since it's so closely associated with Utah.  We found this awesome artwork by artist, Rory Walker.  We wrote and asked permission to use it and he so graciously gave us the okay.  I thought his response was so sweet:

Dear Merlynn,

Thank you for writing and asking permission to use my image in your logo. As it so happens cancer is sadly something that's very much in the forefront of my mind of late. It would be my pleasure to allow you to use the painting, and I hope it can (in whatever sense) go some way to giving the members of your group a small amount of support and encouragement in difficult times. I have a love affair with Utah and could happily spend endless days exploring it. I've been to visit a couple of times, and maybe one day will get the opportunity for further exploration. If you have a website or group page link that I could write about on my website to help spread the word that would be great.

All the best,

Kind regards,

Rory Walker

 

The zebra is the symbol for carcinoid cancer, (see earlier posts) so that's why we've also incorporated it into the logo.  (I purchased the zebra from a clip art site.)

 

We know it will take some time to build, but we're excited about the potential of our new support group.  We'll see how our first meeting goes.

More Good News and Some News That Seems too Good to Be True

We were so happy to get the results from Merlynn's latest MRI and hear the good news that his tumors have not grown or spread during the past six months!  We feel so blessed!  Also, his latest CgA marker is lower than it's been in six months.  This is another great indication that his tumors are stable.

Merlynn received some really interesting information from his online support group this week.  Several studies were cited about a virus being developed in Sweden which kills neuroendocrine tumors.  One of the awesome things about the virus is it kills only the cancer tumors and nothing else!  (That type of virus is called an oncolytic virus, by the way.)  So far, the data comes from lab rats, but it's amazing!  More funding and experimentation are needed before it can be given to humans, but scientists are very optimistic about the results.  (Apple is supposedly donating a huge sum of money towards the research since this is the type of cancer that killed Steve Jobs.)

I have to admit, I'm a little skeptical because all of this sounds just too good to be true.  Wouldn't it be great though, if Mer and others like him could survive long enough for this treatment to be available to them?  I'm in awe of people who are smart enough to come up with these ideas, and I'm so grateful for all the hard work being done to try to find a cure for this illness!  (We also owe a debt of gratitude to those lab rats.)

Here's a great article that tells more about how the virus works:  http://www.telegraph.co.uk/health/healthnews/9508895/A-virus-that-kills-cancer-the-cure-thats-waiting-in-the-coldc.html

Bad News, Then Good News

Photos of the Nebraska Medical Center and Dr. Luciano Vargas Jr.

We traveled to Omaha in late July, hoping Merlynn would be a candidate for liver surgery at the Nebraska Medical Center.  We were hopeful Dr. Vargas could take out half of Mer's liver, let that part regenerate, then do the same for the other half of his liver.  We were so encouraged after learning of others who had had this procedure done successfully and are now cancer free.

The facilities at the medical center were first rate, and Dr. Vargas was really nice.  We were impressed with his abilities and liked him very much.  Sadly though, he informed us that Merlynn's tumors are too numerous and widespread, therefore, he cannot be a candidate for the type of surgery performed there.  We didn't realize only 6 people have been able to undergo this surgery since the cancer has to be contained to only one lobe of the liver.  Obviously, we were disappointed.  Dr. Vargas's advice, like those here in Salt Lake, was to just stay the course.  Keep taking the shots and keep checking his cancer markers and imaging results for changes.  He told Merlynn he will never feel any better than he does right now, that surgery would not make him any better and would probably make him feel worse.  He told him to enjoy this time while he feels good.  If the time comes when the tumors are pushing against a rib or a nerve and causing a lot of pain or are pushing on his stomach so he can't eat, then surgery will be an option.

We were amazed to receive two such opposite opinions from two highly respected carcinoid specialists.  (Merlynn is now thinking of seeing another specialist at Cedars-Sinai to break the tie.)
Here's a link to a video about a woman who was treated there and lived for 13 years.  Sadly she just passed away on September 8.

http://abclocal.go.com/kabc/story?section=news/health&id=8382207

For now, we'll just keep an eye on things.  Dr. Vargas's opinion is likely the safest.

We did receive great news last week when Merlynn had a follow-up MRI.  The radiologist said the tumors are stable and they have not grown or spread during the past six months.  For this we feel very blessed and grateful.  This doctor thinks, as the last radiologist did, that Merlynn's primary tumor might be in the tail of his pancreas.  They'll just keep an eye on this for now as well.

Thanks again to all of you for your love, support, and prayers.  Merlynn still feels terrific!

Another Opinion in Omaha

Merlynn has decided surgery is the best option for him.  He's just not the type of person who can sit around knowing 40% of his liver is full of tumors and do nothing about it.

Through his online support group, Merlynn was introduced to a procedure done at the University of Nebraska at Omaha which is similar to the one offered in New Orleans. It seems to have very successful results.

We've decided to go to Omaha next week to meet with the doctor who performs this surgery and get his opinion on what he can do for Merlynn.  Sadly, the only carcinoid specialist at the University of Nebraska, Dr. Jean Botha, recently returned to South Africa to practice medicine.  However, his assistant Dr. Vargas, is supposed to be excellent.

These two links are about 5 minutes long and tell the stories of Ruth Gerdes and Tammy Kleinman. Both of them had their surgeries done in Nebraska and have been completely cancer free for several years.  When Merlynn corresponded with each of them, they were very positive about their experiences with the procedure.  We're anxiously hoping for the same outcome.

http://www.youtube.com/watch?v=rK2E991Nd6Q

http://www.youtube.com/watch?v=SXxS88cRmPI&feature=relmfu

Zebras

The zebra is the symbol used for carcinoid cancer awareness.  We first learned about this when we read a book called Zebras and Stardust which was written by my new friend, Mary Girsch-Bock, about her sister's struggle with the disease.  Mer found the book online soon after his diagnosis, and it really helped us understand this type of cancer.

Dr. Woltering was the one who came up with the zebra idea, and there are all kinds of zebra things in his clinic.

The reason a zebra is associated with carcinoid cancer is because generally, when people hear hoof-beats they think the sound must be coming from wild horses.  However, sometimes instead it turns out to be a herd of zebras.

Many patients with carcinoid cancer are misdiagnosed for many years because the doctors they visit think the symptoms they're having must be due to something else.  I read that doctors are taught in medical school to look for horses (or common problems) first instead of looking for zebras (things that are rare or out of the ordinary).  This has led to a lot of suffering for many carcinoid patients.

We feel very blessed that Merlynn's cancer was discovered early by a wise primary care physician.  We were also happy when we heard from Dr. Boudreaux (the surgeon who will most likely perform Merlynn's surgery) that since 40% of his liver has tumors and he still remains symptom free, he probably will never get the debilitating side-effects so many others do.

I can already tell by the way Merlynn's been talking today that he's probably going to opt for the surgery.  He's been trying to comfort me and help me be at peace about it.  I'm not there yet!

Decisions, Decisions...

We returned yesterday from our visit with Dr. Woltering in New Orleans.  He's basically a nice guy and pretty funny.  I can tell he truly is brilliant and very dedicated to his work with carcinoid cancer.

There's a map on the wall in his clinic showing where all of his patients live. Some of them have come to see him from as far away as Asia and Australia. 

I appreciate very much all the time he spent with us.  However, some of his language was rather crude, he tried to make us feel stupid after some of the questions we asked, and he called Utah a big hole which REALLY bugged me!  (He may have a stereotypical view of OUR beautiful state, but holy cow!  He's working in LOUISIANA, a state that doesn't exactly come across with an outstanding image in my book.)  The medical facilities at Huntsman Cancer Institute and IMC seem far superior to the one we saw in New Orleans.  I'd say the hospital there is a small step up from the Plantation Rest Home. The grounds were a mess, and it just seemed really old and smelled kind of bad.  Hopefully, it's better than it appears, since we may be spending a lot of time there.  If only we had some good carcinoid specialists HERE!

Dr. Woltering's plans for Merlynn's medical care have put a big pit in my stomach.  I need to have faith that Heavenly Father will guide us and won't take Merlynn before his time, but it scares me that Dr. Woltering and surgeon, Dr. Boudreaux, in New Orleans feel strongly that Merlynn's primary (original) tumor must be removed. It's the one sending out most of the bad stuff. The problem is, no one's been able to find it. If it's in the tail of his pancreas, it might not be too horrible to remove, but most likely, it's in his bowel. They will have to open Mer up and go through all of his intestines inch by inch with their hands, feeling for tumor(s) with their fingers.  If tumors are found, they'll have to cut out those parts of his bowel. 

Also, Dr. Boudreaux said he thinks he can remove up to 70% of the tumors in Mer's liver surgically. That would be great if all goes well, but I have so much fear about them cutting him up! What if he bleeds too much or there's a blood clot? What if he gets an infection? What if his bowel doesn't heal and he suffers the effects for the rest of his life? What if he ends up in constant pain?  We were told we should "get on top of it" now while the tumors are stable because it might be too late later on.  It all seems so extreme!  It's so hard to have him go through these procedures when he feels so good right now! 

It's somewhat shocking to have gotten such a different opinion while we were in Louisiana than what we've received from the doctors here in Salt Lake. The Utah doctors just want him to keep taking the shots for as long as they work, which could be up to 10 years. The New Orleans docs feel they could give him 20 years by doing it their way, and he'll probably die of something else before the cancer takes him out.  It just seems so risky to me. Of course I'd love to have 20 years here in mortality with my Merlynn, but I don't want to lose my chance at 10 years either.  We'll see...We'll fast, pray and spend some time in the temple and then decide.

More Tests

In preparation for our May visit to carcinoid specialist Dr. Eugene Woltering in New Orleans, Merlynn has been having more tests run at this doctor's request.

Last week he had another MRI.  The radiologist who studied the results reported finding what he feels is the primary tumor in Merlynn's pancreas. 

Hearing about the possibility of a tumor in his pancreas really scared me and I cried for three days, but according to Dr. Nibley, this is "inconsequential" since he already has "more than 10 but probably less than 20 tumors in his liver."

Dr. Nibley has been great about working with us, but he feels it's unnecessary to do anything to help Merlynn other than offer the monthly shot.  I'm really looking forward to visiting with Dr. Woltering who has written about several other options that are available, including surgery or radio frequency ablation which can somehow burn and kill the tumors.  (Dr. Woltering also thinks it's unlikely the tumor in Mer's pancreas is the primary one.)

I'm glad Merlynn is studying all the options so when the time comes, we can make an informed decision as to how to proceed.

(I'm including the above picture to show the "harpoon" he gets stuck with every month.  OUCH!)

An Octreoscan and a Visit with the Doctor

We spent the past two days at Intermountain Medical Center while Mer had an octreoscan. He was injected with a radioactive substance (indium-111) mixed with octreotide (the drug used to slow the tumor growth and ease the symptoms; the brand name is Sandostatin.) As the mixture went through Merlynn's system, it "lit up" his organs as it traveled throughout his body. Pictures were taken for about a half hour starting at noon on Monday, then for a couple of hours on Tuesday, followed by a CT scan. Most of the concoction eventually left his system, but it stayed and "stuck to" the tumors, making them "glow". By looking at the images, doctors were able to see where the tumors are located.

 

The biggest reasons we decided to have this scan done were to try to find the "primary" or original tumor, which is suspected to be somewhere else in Mer's body, and because the specialist we want to meet with in New Orleans said he wouldn't even see Merlynn unless he could see the results of this scan.

 

Okay, the results: Although the primary tumor site was not found during the octreoscan, and the scan does show 8 large tumors in his liver, we were happy to learn that the tumors do not appear to be in any other major organs. (The radiologist wasn't able to see a difference in the size of the tumors when he compared the CT scan results with the first one.)

 

The above picture shows the results of the octreoscan. You can see the tumors glowing in Merlynn's liver. I can only count 6, but the radiologist could see 8. (Tumors smaller that 2 cm don't show up on the scan.) The reason Merlynn's kidneys are aglow in the image is because some residual radioactive material was still there. There are no tumors in his kidneys.

 

Seeing Mer's liver lit up like a Christmas tree and knowing there are eight big tumors totally freaks me out and makes me cry. (Merlynn continues to remain calm and always dwells on the positive side of things.) We feel very blessed that the results were not worse and no tumors were found in his pancreas, kidneys, bowel, lungs, or spleen. Dr. Nibley also told us Mer's liver is still functioning normally, and that's good!

 

The doctor doesn't feel we need to go to more drastic measures at the present time to try to reduce or remove the tumors, but we'd still like to see what other options are out there and consult with doctors who are specialists in this field. There are only 10 specialists in the United States and none are in Utah, so we'll plan some fun trips and go see them!

An Update From Merlynn

Merlynn sent the following info in an email, and I thought he explained what's going on much better than I can. He told me I could include this update on my blog.

"Once a month Laurie and I go to the Utah Cancer Specialists Clinic (UCS) at the Intermountain Medical Center. Depending on whether we have to wait to see the oncologist, we're normally there for less than an hour. I get a shot in my behind from a nurse, which takes about 10 minutes, and occasionally we get to see the oncologist for another 10 minutes. Most of the time we spend in the clinic we are just waiting for things to happen. 

The shots I am taking, 30 mg Sandostatin LAR, are quite expensive but are very effective in controlling the very undesirable symptoms of carcinoid cancer and are also supposed to slow the growth of the tumors. The needle is the size of a small harpoon but needs to be that big and long because the injection has to go into the muscle and consists of a time-release powdered drug which is dissolved in the liquid phase just prior to the nurse doing her thing. All this being said, we were still surprised at the amount that UCS billed for only my Dec 14, 2011 office visit. Please see the attached graphic. (If you click on it, you'll be able to see it better.) All we can say is: Thank Heavens for good health insurance!!!

 

I had some blood work done last week and had the first CT scan done since Sept. 28, 2011 when I was diagnosed. The scan indicated that the tumors in my liver are "stable", although some of them are quite large, 3" x 1 1/2" x 1", and that there appeared to be no cancer tumors outside of my liver. We are quite anxious to get the "no cancer tumors outside of my liver" confirmed by a more specialized scan called an "octreoscan" that is designed just for detecting carcinoid tumors. That scan is scheduled over a 3 day period next week.

 

The Chromogranin-A (CgA) cancer marker in my blood work was down to 66, which is by far the lowest it has been since I started the shots when it was 1,900+.

 

All in all I feel really great, we feel very blessed that things are going well, and the bills are being paid! Thank you for your faith and prayers in our behalf. "

 

(This is Laurie again.) I just thought I'd mention that the shots Mer's been getting have gotten easier to take. There have been fewer side effects and less pain at the injection site. As Merlynn has said, "All's well that goes in the end well!"

Things are lookin' good!

We visited with Dr. Nibley after Mer's second shot yesterday, and although he couldn't give us much more information, he was very excited and encouraged by the huge drop in Merlynn's CgA level. Obviously, the shot appears to be working, but he won't be able to tell us if the tumors are shrinking or if there are fewer of them until after Merlynn's next CT scan, which is scheduled for February. We're feeling so good right now though.

Merlynn was very careful about what he ate yesterday, since he had been a little sick after his first shot. This time he didn't have any side effects at all! He was even able to sleep on the side where he got his injection.

Thanks again everyone, so much, for keeping us in your prayers. We are really feeling them, and we're so grateful for your love, support, and friendship. We're very relieved, and we feel so blessed!

Yippee!

Although we won't know exact details until Merlynn meets with the Dr. on Wednesday, we were thrilled when he looked online and found the results of his blood test from last week. After being on the Sandostatin shot for only 3 weeks, his CgA level has dropped from 1,916 to 128! Normal range is 0-95, so this is truly amazing! We don't know what else the Dr. will tell us, but no matter what, THIS HAS GOT TO BE GOOD! Thanks, everyone, for your prayers!

Earlier this week while we were helping with a volunteer luncheon at the Bountiful Temple, we met Mike and Judy Kueper. Mike is the first person we've met who has the exact same type of cancer as Merlynn, and it has also spread to his liver. They're a neat couple, and it was comforting to talk to them. They were very positive and encouraging. Mike's been taking the shots for a year and said his tumors have virtually stopped growing. He told us that according to his billing statements, the shots cost $11,000 each! Holy Cow! Thank goodness for insurance.

We feel very blessed that although it had already spread to his liver, Merlynn's cancer was easily diagnosed. Mike was sick for 10 years and the doctors couldn't figure out what was wrong with him. (These tumors grow slowly and it's difficult to find the primary site.) They finally had to remove 4 feet of his intestines. He really suffered before he was able to get on the Sandostatin shots. We're extremely grateful that Merlynn is still symptom free.

Things could be worse...

When we arrived at Utah Cancer Specialists today, we were told to have a seat in the infusion clinic while we waited for the nurse to prepare Mer's sandostatin shot. (The drug has to be mixed and warmed properly.)

I have to admit, at first I had a pit in my stomach as we sat next to several cancer patients who were receiving their chemotherapy treatments. It was so sad to see young people and others who were struggling at various stages of the disease.

We sat next to, and made friends quickly with a sweet lady named Barbara and her husband, Richard. Barbara had a port in her chest where she was receiving the chemo drugs to treat her inflammatory breast cancer. Richard is being treated for multiple myeloma. (bone marrow cancer) They were both so positive, funny, and friendly towards us and immediately put us at ease. (Somehow they could tell it was our first time there!) The couple gave us good advice and seemed genuinely interested in our well being. They were even excited to have their picture taken and be a part of my blog! I admire them both so much! I want to handle things the way they seem to be coping with their trials. I can't imagine the stress they must be under! We immediately felt bonded to them and were grateful for the empathy they were able to show us because of their own difficulties. It was really a blessing to have met them today. What a great couple!

First Injection

Merlynn received his first sandostatin shot this afternoon. The nurse did a great job of giving it to him, so he hardly felt a thing. However, over the past few hours he has started to feel some cramping, nausea, and like he has a big boulder lodged in his backside. (These are all common side effects from the injection.)

The biggest worry of the day, unfortunately, is that the results of his blood tests came back with some poor results. His serotonin level has risen from normal range to way above normal. That means the tumors are secreting way too much of this hormone. The scariest thing is his chromogranin A level. It should be somewhere between 0-95 and it's 1,916! This seems to indicate how massive his tumors are. Hopefully, the sandostatin will bring these levels down. He'll take another blood test next month, prior to his shot appointment, and the doctor will be able to tell from his new chromogranin level if the shot is working. Please pray that it will!

The more we know...the scarier this gets!

Merlynn has been doing a lot of research on carcinoid tumors and the sandostatin drug he'll be getting next week. He's also joined a support group on the internet where he can communicate with others who have this awful disease. We've heard a lot of horror stories, felt very frustrated, and neither one of us has had the best of days. We also found out this is the same type of cancer that took out Steve Jobs.

Thanks to my friend, Lynne Peterson, who gave me this wonderful book, Grateful, a few years ago. It's one of my very favorites! I love the song sung by Art Garfunkel that goes along with it.

I also appreciate my awesome visiting teacher, Kaye Walton, for suggesting I put the link on my blog. I need to listen to these lyrics every day and remember how truly blessed we are! (Today I kinda forgot.)

http://www.youtube.com/watch?v=XO7Dbd9mKvo

A Second Opinion...

Following the advice of our primary care physician, we went to visit Dr. William Nibley at Utah Cancer Specialists (Also known as the Jon and Karen Huntsman Cancer Center) yesterday. We waited two full hours before we got in to see him, and he didn't tell us anything new. The prognosis and care are the same, but we like his personality and the convenience of getting the sandostatin shots close to home. Running over to IMC once a month will be easier than heading up to the Huntsman Cancer Institute, especially during the winter. After yesterday's long wait, we were glad to hear we wouldn't need to spend more than 30 minutes there on days when Merlynn gets his shots.

Another good thing about going through Utah Cancer Specialists is that they're part of the IMC network. We can have easy access to the physicians through email as well as calls, and all of Mer's medical procedures can easily be pulled up online.

Dr. Nibley told us he's never known anyone who had an adverse reaction to the shots and agreed with Dr. Ward that patients who receive the drug live longer than those who don't. It's hard to think of all those chemicals going into Merlynn's body when he doesn't even feel sick, but after praying about it, reading about it, and listening to the doctors, we feel it's the best way to go. He'll get his first shot on November 15.

Sadly, there are no restaurants at Utah Cancer Specialists and the place is not as plush as Huntsman, but at least it's about the only place we've been where they didn't call Mer "Marilyn"... :)

When upon life's billows...

As difficult as things seem right now, there are several things I'm very thankful for. Here are some of them:

1. We feel the love and support of so many family members and friends. Several of them participated in a special fast and a family prayer for Merlynn, which we appreciated so much!

2. We've always felt peace as we've knelt and prayed together and expressed our fears and concerns to our Heavenly Father.

3. We're thankful that this type of cancer is probably a slow-growing kind and we'll likely live many more happy years here in mortality together.

4. We feel blessed that when the doctor who performed the CAT scan was about to send us home, thinking the masses in Mer's liver might be tangled blood vessels, he miraculously found an old CAT scan from Merlynn's 2004 kidney stone at the last minute. He noticed Merlynn's liver was free of lesions at that time, which led him to believe Mer's tumors were not blood vessels after all. He performed an immediate biopsy. This allowed us to get the proper diagnosis right away, before Merlynn had any symptoms, giving us more time to study our options.

5. It appears Merlynn will not have to endure the sickness, distress, and the side-effects that come from chemo and radiation treatments. We're happy about this.

6. We're so grateful I was inspired to buy out my last year of teaching and retire in July. This will allow me to be with him every step of the way without the worry of having to miss school or prepare for substitutes.

7. I'm feeling incredibly thankful to have been blessed with the world's greatest husband! Heavenly Father gave me someone who is a perfect match! I love him so much!

My Feelings

I've felt so many emotions since getting the news about Merlynn's cancer. At different times I've been sad, shocked, scared, heart broken, nauseated, and in denial--with some depression, discouragement and self-pity thrown in. I've also been very worried, wondering how I can help Mer through it. I want to do the right things, say the right things, and take good care of him, but I don't have a lot of confidence in my coping and nursing skills. I'm sure I'll learn.

I've also felt very blessed just knowing I've had the opportunity to be married to this wonderful man and thankful for the peace the Lord has brought to our hearts. I'm so grateful for an eternal marriage! With Heavenly Father's help, I know we'll get through this together, but I can't even imagine my life without him! Before I got married I'd hear people talk about their "other half". I SO get that now! Merlynn has literally become a part of my being!