A quick class on Carcinoid Cancer

Carcinoid Cancer is often known as cancer in slow motion. Dave Thomas, the founder of Wendy’s hamburger food chain had Carcinoid for 10 years before it metastasized to his liver and in 2002 he died at the age of 69.

Carcinoid tumors emit large quantities of chemicals like serotonin, histamines and other problems. Most people who experience Carcinoid Syndrome because their cancer has metastasized to the liver.

Some of the Carcinoid Syndrome Symptoms are:

• Uncontrollable diarrhea
• Flushing
• Low blood pressure
• Asthma like wheezing
• Heart damage/rapid heart beat/Heart valvular lesions
• Cramping/abdominal pain
• Arthritis
• Peripheral edema - a swelling of the ankles, legs, hands and arms, or neck and face.
• Cyanosis - characteristic bluish skin spots that appear after flushing, and are produced by a lack of oygenated blood circulation.
• Pellagra - nutritional deficiency that causes symptoms such as skin rash
• Telangiectasia - reddish spots or veins that appear most often on the face, chest or arms.

The syndrome symptoms can be so severe that they, not the Carcinoid tumors, are the cause of death. Carcinoid Tumors most frequently appear in African American women between the ages 50 to 70 and this is not hereditary. The chances of dad and I both being diagnosed with Carcinoid are slim to none. All I gotta say is, “Someone’s got some explaining to do then!”

There is another condition referred to as Carcinoid Crisis which causes a fatal episode of flushing, low blood pressure, confusion and breathing difficulty and must be handled immediately. Carcinoid Crisis can be caused by having anesthesia, chemotherapy, or can happen for no apparent reason. For more information you can visit a webpage at www.carcinoid.com.

It didn’t take me but a few jumps on the google search engine to realize the internet was not going to be my friend during this journey. So I determined in my heart to let the doctors do their job and resist the urge to do any further investigating of this very frightening diagnosis on the internet.

Here is a partial list of the doctors I visited and the various tests that were done.

Jan 19, 2004 Sharon Regional CR ABD UPPER WO/W Contrast
Jan 30, 2004 Sharon Regional 5HIAA urine 24/HR
Feb 4, 2004 Sharon Regional liver needle biopsy
Friday the 13th Feb 2004 Sharon Reg. 1st Carcinoid diagnosis

When I was diagnosed at the doctor’s office, my friend, Carol wasn’t going to take this Carcinoid diagnosis lying down. She immediately began making plans for us to get a second opinion… then a third… then a fourth… eventually I lost count of how many different doctors we tried to get an appointment with.

Mar 10,2004 Hillman Cancer Ins. Ocreotide Scan & 2nd Carcinoid diagnosis

On my 44th birthday, March 10, 2004 I had an appointment at a Pittsburgh, Pa hospital for more testing. The night before the actual test, I was given several doses of radiation and then 24 hours later went through a barrage of testing. My mom, Chrissy and friend, Carol and I spent the night in a hotel close to the hospital.

That night in the hotel was one I will never forget. Weeks in advance, Carol contacted several women at the church to let them know that I would be in the hospital on my birthday. Then she smuggled gifts, cards, flowers and so much more into the hotel room without me knowing it. I’m still not certain how she accomplished all of that. But what a blessing!

The night before my testing, I came out of the shower to find the room fully decorated with flowers and banners and a bed full of gifts from my friends back home. Tears immediately filled my eyes and flowed freely down my cheeks for several hours while I read each card and opened each gift. There is no way to describe the strength my soul gathered from each act of kindness these ladies displayed toward me. The four of us sat in amazement as we felt the love of so many pour over us right there in the hotel room.

The next morning, I got into the shower and mindlessly squeezed liquid soap into the palm of my hand. When I looked down at the soap I couldn’t believe my eyes. The soap had formed the perfect outline of a heart! I stood there amazed as I watched it fill in and remain in the shape of a perfect heart. Then a still small voice spoke to my heart and said, “Rest in My love My child.”

During the scan I was thinking how cruel the nursing staff was to be eating their lunch in front of a woman who hadn’t been allowed to eat for two days. Then I had a thought. “Someone has to help the doctors and nurses believe in miracles; and restore their compassion, someone needs to spur them on to do their jobs in a spirit of excellence while anxiously awaiting a healing from Someone much bigger than themselves.”

After lying on a cold, hard, metal table for literally hours during the testing, we once again received another Carcinoid diagnosis. This wasn’t going to stop us. We immediately made an appointment with a doctor from John Hopkins in Baltimore, Maryland.

Mar 23, 2004 John Hopkins Two separate doctors - 3rd & 4th Carcinoid diagnosis

Funny story about John Hopkins: first what we were expecting the hospital to look like and what John Hopkins actually looks like was astounding. As we drove toward the hospital, it seemed we were in a ghetto like none I’ve ever experienced before. Once in the hospital, I was wondering if maybe God was going to do something out of the ordinary through this chance meeting with the young, good looking Dr. John Doe (name changed for obvious reasons).

When we looked Dr. Doe up on the internet, we all commented on how… well… how appealing his picture and bio were. Mostly his picture. Upon arrival, we waited in the waiting room forever and then were taken to an examining room. As we all sat in the examining room, we chuckled and talked about what this encounter with Mr. Gorgeous might turn out to be.

After a long, long wait, the door finally opened and this old, grey haired, doctor with a poochy tummy walked in and introduced himself. I wanted to look around for the Candid Cameras, but instead sat quietly trying to listen to his diagnosis while my mind was screaming “Hey! Wait a minute! Where’s that gorgeous hunk of a man whose picture with your name is on the internet?” When we left our appointment, we looked him up again and sure enough it was Mr. Gorgeous about 20 years after the picture had been taken. How cruel is that? Besides, what man in his right mind would marry a woman with stage 4, terminal cancer anyways?

So in just a few short months, we traveled as far as from Pittsburgh, Pa to John Hopkins Hospital in Baltimore, Maryland only to hear the same diagnosis. Finally, I knew that I needed to resolve to the fact that I wasn’t going to get a different diagnosis and wasn’t going to find someone with a magical cure.

So with one more doctor to visit, a Carcinoid Specialist in Columbus Ohio, I found a doctor I could trust and stuck with her for many years of CT Scans and appointments.

Mar 26, 2004 OSU Cancer Hosp CT Scan & appt confirming 5th Carcinoid diagnosis
May 8, 2004 OSU Cancer Hosp ABCD lesions in liver growing in size
June 24, 2004 OSU Cancer Hosp Clincial Trial cancelled due to sudden death side effects

On June 2004, I was scheduled for an experimental, clinical trial. The doctor had explained the risk involved but it was my only hope of a cure. Two days before I was to begin the treatments, the trial was shut down.

When we went to OSU Cancer Hospital for my appointment (which should have been the beginning of my Clinical Trial), I will never forget the look on Chrissy’s face as the doctor explained (in broken English) that the reason the Trial was cancelled was because several people had already experienced “sudden death” while beginning the treatments!

Poor Chrissy. Every time she heard the words “sudden death” she turned white as a ghost and almost fell off the stool in the doctor’s office. She said later she honestly thought she was going to pass out when she realized just how close I was to receiving an injection that could have taken my life suddenly.

Sudden death was not a side effect any of us were willing to chance. It was at this moment I realized that God wasn’t finished with me yet. Lu 4:10 - 'He shall give His angels charge over you, To keep you,' If He was going to protect me from “sudden death” then I needed to trust Him completely and walk this journey out.

July 15, 2004 OSU Cancer Hosp CT Scan & appt.
Oct 21, 2004 OSU Cancer Hosp CT Scan & appt.
Jan 8, 2005 OSU Cancer Hosp CT Scan & appt.
Feb 24, 2005 OSU Cancer Hosp cholecystectomy (gallbladder removed because Sandostatin was causing gallbladder sludge)

Doctors expected me to be down for a long, long time after this cholecystectomy. Actually, I bounced right back up and was ready to get back to life as usual. What was nice about this particular operation was I got to see what my boyfriend, Joe Lantini was like under pressure. I’m happy to say he passed with flying colors under the watchful eye of Carol and Chrissy.

Aug 25, 2005 OSU Cancer Hosp CT Scan & appt.
Dec 14, 2006 OSU Cancer Hosp CT Scan & appt.
Dec 15, 2006 OSU Cancer Hosp small bowel resection with side to side anastomosis

My appointment was supposed to be a simple CT Scan & appt. But unbeknownst to me, there was a bowel blockage that was ready to burst. It was so severe that the doctor admitted me immediately and scheduled the small bowel resection for early the next morning.

Now don’t let the word SMALL bowel resection fool ya. They took over 2 feet of my small bowel. But once again, thanks to the faithfulness of God I bounced right back and a week after surgery I was out strolling the malls and Christmas Shopping for our four month old grandson, Gavin.

Now I’m not endorsing having surgery to get out of all the Christmas drama but I gotta say having this surgery during the Christmas season was a real blessing. When I left on December 14th I had very little Christmas shopping, baking, cleaning, and/or wrapping done. While I was in the hospital, Chrissy took my credit card in hand and had everything handled before I came home.

We would crack up when a super cautious sales clerk would call my cell and ask if I was Brenda Lantini. I would simply say “Yes I am” and instantly Chrissy had the ability to charge just about anything she wanted on my card. Now, correct me if I’m wrong but couldn’t anyone steal my credit card and have the sales clerk call anyone’s cell to get permission to make purchases?!

Dec 18, 2006 OSU Cancer Hosp CT Scan & appt.
Feb 23. 2006 OSU Cancer Hosp CT Scan & appt.
Mar 8, 2006 OSU Cancer Hosp CT Scan & appt.
Jan 4, 2007 OSU Cancer Hosp CT Scan & appt.
May 10, 2007 OSU Cancer Hosp CT Scan & appt.
June 6, 2008 OSU Cancer Hosp CT Scan & appt.

When I was first diagnosed, the doctors said that the primary tumor was in my small bowel with multiple tumors in my liver. When I asked how many tumors were in my liver, the doctors simply said, “Too many to count!” They continued by saying that there is no cure for Carcinoid, there are no treatments and they offered no hope. Then they hinted at a very short life span for me; since it had already metastasized to my liver. They explained that toward the end of the disease they could do Chemo Embolization. But this treatment was only designed to “buy me time” and couldn’t be repeated more than 2-3 times because each time it’s administered it’s a little less effective.

July 15, 2008 OSU Cancer Hosp Chemo Embolization

You can read more about my Chemo Embolization in Chapter Six.

July 28, 2008 OSU Cancer Hosp CT Scan & appt.
Aug 18, 2008 OSU Cancer Hosp CT Scan & appt.
Aug 24, 2008 OSU Cancer Hosp CT Scan & appt.
Oct 9, 2008 OSU Cancer Hosp CT Scan & appt.

In October of 2008 I lost my job and my medical insurance. Which meant that all doctor’s visits at James Cancer Hospital or anywhere else were finished. At this time, I found myself battling my thought life again. Fear, confusion and a host of other emotions wanted to take over but I couldn’t let them.

At times I wondered what kept me going. Why didn’t I lose faith? Why didn’t I just give up? I can assure you the strength to carry on was nothing of my own doing. It was the faithful love and mercy of my Heavenly Father that kept me going. If it had been up to me, I would have thrown my hands up in defeat at the very beginning. But it was His stubborn love that kept drawing me back.

It was also a series of daily choices. Choices like: Continuing to play keyboard for praise and worship regardless of whether I felt like it or not, literally running home and covering my head whenever I was tempted to find comfort in the things of this world, willing to be a Godly example for those who are faced with the heartache and challenge of cancer and trying to find some way to glorify the Lord through it all.

For several years I was faced with daily choices. Some were obvious choices and some were not as obvious. Some I understood what God was doing, some I did not. But in the midst of the storm even though it seemed like the sun would never shine again; I realized that if I just gave it time the Son would shine brightly once again. It doesn’t stay dark forever. Seasons change ~ but God never changes. Finally after a long, long time I was able to look back and realize the hand of God had led me every step of the way.

At the beginning of the diagnosis, many people (out of the goodness of their hearts) began giving me books, cassettes, CDs, bottles of liver enhancers and many other concoctions guaranteed to heal my cancer. At first, I was tempted to begin reading every book, take every pill and drink every bottle of ‘cures’ that were given to me. What did I have to lose? Let’s try it all! But then as I searched my heart, I told the Lord that I was going to trust Him completely. When this was all said and done I didn’t want anything to take the credit for the miracle God was going to do.

Now I’m not saying if your doctor suggests a certain medication not to take it. I took a Sandostatin shot monthly to control the symptoms of the Carcinoid for over four years. What I’m talking about are the things you see on T.V. promising to cure you, the bestselling books that have YOUR answer to health. I believe one of the things that enabled me to keep my peace of mind was by not going on all those wild goose chases and trusting God totally and completely.

In 2004, the Carcinoid Specialist was using terms like “quality of life,” “keeping me comfortable” and “buying time.” Of course, I was devastated. Everything I ate made me violently ill and caused severe pain. Pain like I’ve never experienced in my life. To best describe the pain I would say it felt like I had a metal corset that covered my entire trunk. The pain would begin and keep getting tighter and tighter until it caused me to roll up in a ball on the floor crying and gasping for breath. At times I would vomit and have chills with the pain. At other times I didn’t.

Almost daily I found myself lying on the bathroom floor praying for relief from the pain and wondering if that relief was going to come in the form of me going to Heaven. I began preparing for my death by securing a cemetery lot and writing out what I’d like my funeral service to look like. Until one day I shook myself and said, “WHAT ARE YOU DOING?! STOP THAT!”

The power of life and death are in the tongue and I needed to stop speaking negatively. I needed to stop planning on dying. I needed to stop entertaining the fear that would flood my soul at night. I needed to believe that God was able to deliver me and that He had a plan for my life during this painful time.

But even during all the pain and all the fear, the greatest heartache in my life was the fact that I had lost contact with my son, Josh. I remember throwing myself across my bed on New Year’s Eve 2004 (just 6 weeks before my diagnosis) and crying out to God. “Lord” I cried, “I can’t bear to not have a relationship with my son. My aching heart is killing. Please bring him back into my life! Do whatever it takes God! Please God!”

God always hears our prayers but doesn’t always answer the way we thought He would. I believed He was going to bring Josh back but I never dreamed He was going to do it through a cancer diagnosis.

Then one Sunday after church, I was lying in severe pain on the couch with my heating pad. When my front door opened and my son, Josh walked back into my life like he had never left. The same young man who hadn’t spoken to me for over four years was back and it was time for us to begin building our relationship again. At first it was a little awkward. But no matter how far apart we had been, the love we had for each other went farther.

After several visits, he was sitting in my rocking chair in the living room and said, “Mom. You know if it wasn’t for the cancer diagnosis I wouldn’t be sitting here.” Tears filled my eyes and I said, “Ya. I know. And if I had a choice I’d do it all over again in a heart beat.”

It was the cancer diagnosis that brought him back into my life and we both knew it. God always answers prayer – just not always the way we expect or would like Him to.

Josh and I have a GREAT relationship now. He and his wife, Megan visit often and it’s always fun when we go out for JIB-Jab hotdogs or ice cream. Sometimes when I look at him I think of how desperately I missed him while he was gone. Then I smile and remind my heart that God really does do miracles.

Not only did the Lord restore my relationship with my son, Josh; but when I married Joe God also gave me another son, Joey Lantini III, and two step-sons John and Giovan, two step daughters Katina and Tiffany, a step-granddaughter Gianna and a step-grandson Little Giovan. (I only use the term ‘step’ in order to be politically correct). They are all my kids as far as I’m concerned. And I’ve sincerely enjoyed getting to know each one of them.

For years I mourned my loss especially at Christmas when I just didn’t have any reason to put up the stockings. Because there were no children in my house to open them. Now, I have a tough time finding enough room for all sixteen stockings. During the time of the divorce it seemed like I had lost everyone and everything, but God promises that He will restore the years that the locust hath eaten… Job 2:25

When locust devour a crop the farmer needs to keep sowing seeds and waiting. Eventually seasons change and new life begins again. I am a blessed woman to have so many children in my life. I could have never guessed that this was even possible. But God. He is so faithful.