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"... :)