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!

Merlynn's Feelings

Because Merlynn has such a fun, easy going, mellow personality, I'm wondering how he's feeling about all of this. I can't imagine what it must be like to know you have a terminal illness. Besides a few tears here and there, he's been pretty quiet and remarkably positive. He tells me he'll talk to me about any concerns he has, and I hope that's true. Communication has been such an important part of our marriage. I love him so much, and I'm so worried about him! What an amazing man he is.

I get the feeling he's not too phased by the diagnosis at the present time. He took me to Mimi's for dinner on the way home from the doctor's office, and he ordered...LIVER!

Meeting Dr. Ward

We're planning to get several opinions on the best treatment options for Mer, but we decided to start by seeing Dr. John Ward. He was Nancy's favorite doctor when she was ill. (We also heard he treated President Hinckley, so we figure he must be good.) Our first visit with him was on Thursday, October 20.

Dr. Ward is a really nice man, and he was very kind. He didn't deliver much good news, however. We were told the diagnosis had been confirmed by a pathologist at Huntsman. The cancer is at "stage 4", and there is no cure and there are no treatment options. (His liver has too many lesions to do surgery, and chemo and radiation are not effective on this type of cancer.)

He also told us this is generally a slow-growing cancer. He had one patient who lived with it for 15 years and then died of something else. (We're planning on breaking this record!) However, another patient had an aggressive form of the disease and only lived for one year. Rosie, the PA, told us most patients can plan on living for 6-8 years. We will be so grateful if Merlynn has the slow-growing kind.

The next step, according to Dr. Ward, is to find out how fast the tumors are growing. They drew some blood and ordered a couple of other tests, mostly to get a baseline, as I recall. Mer will have another CAT scan in three months to see if the tumors have grown and by how much.

The only treatment available is a shot the patient can take every 3-4 weeks called sandostatin which will help reduce the side-effects (flushing and diarrhea) which are common with this type of cancer. (Merlynn has yet to experience any symptoms.) Some people who have taken the drug have shown signs that the drug slows the growth of the tumors.

We're interested to know if other doctors share the same opinion. We have an appointment with a Dr. Nibley, a physician recommended by our primary care doctor, on November 3.

Our First Visit to Huntsman

On Monday, October 17, we went to the Huntsman Cancer Institute for the first time. (Well, it was my first time. Merlynn went there a multitude of times when his first wife, Nancy, was dying of cancer.)

I have to admit that I kind of freaked out. Since the initial melt down I experienced after seeing our first medical report, I think I had been in a state of denial. Seeing sick people and a basket full of "free hats" made our situation very real to me. To be honest, I haven't really been able to relax much since then.

We went to Huntsman because they have a great library where you can do research on "your type of cancer". The people there tried to be helpful, but they didn't have a whole lot of information on carcinoid tumors which have spread to the liver. That's because it's so rare. We did find a few things, mostly by investigating on our own, so we felt like we were as prepared as we could be for our first appointment with the doctor. We also wrote down as many questions as we could think of to ask him.

After our study time, Merlynn took me to lunch at one of the two great restaurants they have there. I can tell I'm stressed because I didn't really feel like eating. (That doesn't happen very often!)

How Merlynn was diagnosed

Merlynn hasn't felt sick at all! In fact, he's never even had a cold since I've known him. However, he's had high blood pressure for several years. During the past few months, his blood pressure has been out of control. His primary care doctor prescribed several different medications, none of which worked for more than a day or so. Eventually, his doctor sent him in for an MRI to determine if something was wrong with his adrenal glands which could be causing the problems with his blood pressure.

When we received the results, Merlynn's kidneys and pancreas appeared normal, but he had "multiple lesions of the liver, with mass effect, highly suspecting metastatic disease". In layman's terms, this means "liver cancer".

Of course we were highly concerned. We knew what the words meant. We were told however, that this could just be some tangled blood vessels. We were so hopeful! The doctor ordered a CT scan and biopsy. The CT scan results definitely showed "innumerable masses" in his liver, but the doctor still held out hope they could be tangled blood vessels. He was about to send us home and was going to have us come back in six months and check for changes, when he discovered an old MRI from 2004 when Merlynn had had a kidney stone. His liver did not show any signs of lesions at that time, so the doctor was again concerned. He said people with tangled blood vessels don't get them late in life. They are in the liver by the time they are teens. Therefore, he thought we should proceed with the biopsy. Even after the biopsy, the doctor could see no "visible signs of cancer". Again, we were so relieved!

Sadly however, the final results were not as good. When an expert pathologist looked at the biopsy, he did, in fact, find cancer in Merlynn's liver cells. This is a rare form of cancer which is very hard to diagnose. The doctor told us it was time to see an oncologist. We received this official diagnosis on October 3.

I can't believe I'm blogging!

I never thought about doing a blog before, but now that my sweet husband, Merlynn, has been diagnosed with carcinoid tumors of the liver, I thought I'd give it a try. Hopefully, this way I can keep those of you who have been so supportive informed about what's going on. (Things have been so crazy that I can't remember who I've talked to and who I haven't!) We love you and truly appreciate your prayers and concern for us! Let the journey begin...