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...