A Spouse Perspective - Connie Wardenburg

How do I begin?   I certainly am not a writer, but will try and give you an idea as to who I believe my husband Larry is and what has happened over the past year.

Larry & Connie Wardenburg

We were married in February 1998.  This was a 3^rd marriage for both of us, but it seems like we have known each other forever and I not only truly love Larry, but he is my best friend.  Our family is the most important thing to us.   We have 6 of the best kids and their spouses ever and oh boy, don’t get me started on our 7 grandchildren.   

We opened our real estate company in 1989 at Lake of the Ozarks.  We began as a vacation property management company and then added the real estate sales.  Larry’s background was in Hotel management and I had been selling real estate since 1983.  Our company (Lifestyle Properties) grew to be one of the most successful companies at the lake.  We worked hard during those years, especially in the vacation rental portion.   In the beginning we would clean many of our condos and homes in the evening after the office was closed, sometimes working until late at night.   As our business grew, we hired on housekeepers, but many times would do some of the cleaning ourselves.  We loved what we were doing and especially doing it together.

We were lucky to get some great real estate agents join our team on the real estate side of the company.   Our company grew to be successful not only monetarily but was also well respected by our peers.    Life was great!   Then when the real estate market started dropping, we were sure it was only a short set back and we began using our retirement to keep the company open.   I never believed that the recession would take such a toll on the real estate market.   Eventually, we had used most of our retirement and reality set in that we were in financial difficulty.  

We sold our company to Al Elam Real Estate in June of 2010 for a small monetary amount and my entire office moved in with the Al Elam company.    This was a great relief to me as I no longer was the broker/owner and now could just concentrate on selling real estate.  We continue to pay off bills from our company and our credit is still good although our credit debt has gotten out of control.  Larry took on several different jobs, such as working at nuclear plants in Virginia on outages, working at Pauls grocery store and then working for his daughter, Sandy, with computer input and handy man chores 3 days a week.    Not what he expected to be doing in his retirement years.   

We are not quitters and are trying to do everything to keep afloat and not file bankruptcy.   We both always looked at it as we were still very lucky because we had such a great family, each other, good health and our integrity.   We thanked God for all we had and did not dwell on the monetary things we had lost.   We put our home on the market last October.  Larry had owned this home for over 30 years.   An old farm home built in the 1880 that Larry had restored.   It was home to us and our kids and grand kids, but we all realize that home is not the house but where the family is.

Last August 2011, Larry got really ill and was in the Lake hospital for over 11 days.   They thought he had a blood infection, but I believe it was the beginning of his carcinoid showing up.   Many tests and different specialists and medications later, we ended up again in the Hospital in Jefferson City where he was diagnosed with c-diff but the doctor found the tumors in his liver.   The doctor took a biopsy and a few days later we were told he had carinoid cancer and we were referred to Doctor Rifkin in Jefferson City.   He is an oncologist and after some more testing, Larry was referred to Doctor O’Dorisio in Iowa City.    

We are very thankful that all the doctors were so diligent in getting Larry diagnosed and to the right doctors for treatment and testing.   Doctor O’Dorisio has Larry scheduled for the Galium 68 scan this week . Doctor O'Dorisio does not believe that Larry will be a candidate for surgery, but will know for sure once he has the scan.   He has petitioned for Larry to go to Basel, Switzerland for the PRRT treatments.   He says it will be 2 or 3 treatments because of his liver burden.  

I am still learning a lot about the cancers especially from other carcinoid patients.   We are not quitters but pray that the treatments will help slow down the cancer growth.

My Galium 68 Scan Is Finally Scheduled

Thought I would bring you up to date on the carcinoid cancer journey.  The Galium 68 scan is scheduled finally for June 1st in Iowa City, Iowa at the University Hospital. 

My wife, Connie, and I will be driving there on the 31st of May and returning on June 2nd ..  hopefully with good news so we can move on to begin the treatment in Basel, Switzerland.

So far the Octreatide shots seem to be keeping the Carcinoid Syndrome at bay and I'm feeling pretty well other than a little shortness of breath.

My kids are planning a fundraiser here at Lake of the Ozarks  for Thursday, August 16. The hope is to raise a little bit of money to offset the cost of this thing.  It's incredibly frustrating that my insurance won't cover anything associated with the tests and the treatment.

My Carcinoid Cancer Journey

My kids suggested I chronicle my carcinoid cancer journey and experiences to share with others who may be experiencing the same thing. It's not the most comfortable thing to write about, but I'll do my best to share.

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The Early Warning Signs and Where I Go From Here

In August of 2011 we were RVing with some of our kids when I injured my lower back and was taken to the hospital by ambulance thinking I would need an epidural injection or two over a few weeks (I've dealt with lower back problems before) but this was not exactly the only problem.  Anyway after being admitted, the hospital said I had an infection in my blood that needed to be treated first so for several days they gave me strong antibiotics intravenously.  During this time I had diarrhea which was attributed to the heavy antibiotics which can cause what is know as C.dif an bacterial infection which they said I had also.

When I was discharge 11 days later I still had to get the epidural injections to correct the back injury so I went to the pain clinic in Jefferson City for that treatment.

A few weeks went by and the diarrhea continued and my stomach was not feeling right. I dealt with this for most of the remaining summer and throughout the holidays, finally the flushing showed up regularly so off to the hospital again for blood work, xrays, and a CT scan. The CT scan came back OK for my stomach, but Dr. McNelly said he saw 3 spots on my liver which he was very concerned about (these spots did not show in an earlier scan in August 2011)

Dr. McNelly set me up immediately with Dr. Rifkin, an Oncologist in Jefferson City.  After several more scans and tests (it had already metastasized to my liver) Dr. Rifkin said he was sure it was a Carcinoid Tumor in my mid intestine but they were unable to locate the origin.

More tests were needed so an Octrioscan was ordered 2/21/2012 and also 3/5//2012. I swallowed a camera and more blood work, (capsule test Dr. Paul King) to take pictures again trying to locate the origin and again with no luck.  On 3/7 2012 an endocolonoscopy still no luck finding the origin of the tumor.  3/8/2012 went to the emergency room at Capital Regional Hospital severe stomach pain from air trapped in intestine from endosolonoscopry.  These tests ran through January, February, & March of 2012.  Started the Octriotide injections in early April and another CT scan and blood work 4/11/2012.

Next step was to go to the University Hospital in Iowa City Iowa (4/6/2012) to see Dr. O'Dorisio an Endocronologist, his specialty is locating hard to find Carcinoid Tumors.  The first visit was a consultation, and now I'm awaiting the next visit to have the Galium68 scan, this is a much more defining pet scan to locate the original tumor.  This scan can also help determine whether the tumor is operable on not.  At this point Dr. O'Dorisio seems to think my liver is too burdened to operate but he said he would let the surgeon make that determination.

Once the Galium68 scan is done the first treatment will be scheduled in Basel,Switzerland.

Why Switzerland?  The treatment is very costly, but only 1/3 the cost  in Switzerland as compared to the USA. Dr. O'Dorisio said this type of Cancer is a slow growing thing like a turtle, but for some reason mine is acting like a turtle trying to run!  This is not very comforting but I feel that the Dr. O.Dorisio knows what he's talking about (this is current info as of 5/8/2012). 

Welcome to our Fight Carcinoid Cancer Blog

The Fight Carcinoid Cancer blog has been established for several reasons.  

My Dad, Larry Wardenburg, was recently diagnosed with Carcinoid/NET Cancer at the age of 65 ... a very rare and incurable form of cancer not typically diagnosed until it has metastasized to other places in the body, like the liver, pancreas, lymph nodes, or other organs. This was the case with my Dad - it wasn't diagnosed until it had already metastasized to his liver .  Like all cancers there are different treatments but one of the newest and most successful for Carcinoid cancer is the PRRT (peptide receptor radionuclide therapy). This is not a cure but it helps to slow down the progression.

Larry Wardenburg

The worst part for my Dad, and for the others who receive this diagnosis, is that PRRT  is not covered by Medicare and insurance because it is still considered experimental... even though the FDA has approved it. In the United States, the treatment is available at a few locations, including Houston. However, since it is still classified as experimental (only recently approved by the FDA), it is extremely expensive. In fact, the cost of the treatment is about three times the cost in the US compared to overseas. An alternative location for PRRT treatment is in Basel, Switzerland.

The purpose of this blog is to:

1. Chronicle my Dad's experience and my family's journey through his diagnosis and treatment. His plan is to go for treatment in Basel because it costs less than having the treatment in the US. These experiences may serve to benefit others who are diagnosed with Carcinoid.
2. Share resources that we find along the way, in the hope they may help others battling this disease.
3. Raise money to help my Dad get the treatment he so desperately needs.
4. Beyond my Dad's treatment, continue to raise money to help others who share this diagnosis get the treatment they need.

Without the coverage of insurance, the treatment for Carcinoid is costly. So many sites raise money that goes only to research for a cure ... which is greatly needed ... but those sites don't serve the immediate need of treating those who are already diagnosed.  We've found a significant void in this area and this is where we hope to make a difference.