Many have asked how all this started and what my diagnosis is. I put an abbreviated version first in case you don't want to read the long version. The detailed version is to answer questions people have asked and so if anyone has these symptoms they will go get it checked out NOW not later.
Short Version: There was a long term decline in my health which became noticeable in the fall of 2010. Many of the symptoms began very mildly and could easily be explained as minor illnesses related to my allergies and overwork. When I started quickly dropping large amounts of weight I knew something was wrong. After numerous tests I was scheduled for surgery to remove my gall bladder and probably my ovaries on April 28, 2011. During the surgery they discovered cancer. I and my family had suspected this given my symptoms but we never said it nor were we prepared for it. The official diagnosis was Stage IV Adenocarcinoma of the appendix which had spread onto the surface of my ovaries and intestines. It hit my family like a ton of bricks as it did my friends. It was devastating on so many levels and we all entered a pretty dark place for a while. The tornadoes hit Alabama on April 27th and we say one hit our family on April 28th.
Detailed Version:
In the fall of 2010 I started having some odd symptoms. I had slight nausea from time to time which never made sense and was totally unrelated to what or if I ate. However, I have had allergies for years and they often caused minor nausea so I dismissed it. I began to feel very tired most of the time. However, I was working a great deal and attributed it to my schedule and dismissed it. After all I had yearly check ups with the doctor and everything was fine.
It was not until my friend Jenny and I took our annual fall beach trip that I felt something else might be going on. We love the beach yet I slept a large part of this trip because I was so incredibly tired. To not be on the beach or truly enjoy it as much as usual was not like me. I still chalked it up to over work and not enough rest and decided to cut back on the hours I was working when I got home.
Then the stomach and intestinal issues began. I would get sick after eating or did not want to eat. I had horrible cramps and started having some pain below my naval. I knew these symptoms were not good and not normal. The nausea and stomach issues increased. However at that time too all this information about probiotics and its impact on your digestive system came out and I thought maybe that was it. Yet the symptoms intensified and it became so bad I was throwing up after every meal or unable to eat at all or did not want to. I lived on banana Popsicles basically. Self diagnosis was not working obviously (caution to those who do this or use Dr. Google to diagnose yourself). Neither was dismissing the symptoms. Please learn from me and do not dismiss medical symptoms without solid answers.
When I began dropping weight rapidly which I have never been able to do I knew there was a problem. My fear was cancer. I've had three uncles, two biologically related, who lost their battle with cancer. I made an appointment with my fabulous general physician Dr. McLaughlin. It was then that multiple tests began. He took the approach of eliminating things from less serious to more serious so it took time. Some test were extremely painful and others just inconvenient. I was diagnosed right away with anemia but Dr. M did not want to treat the anemia until he could figure out the cause. Consequently, I had to continue to deal with being exhausted all the time. I had to take a two hour nap mid day just to function. My coloring became a white/gray and weight continued to drop because I could not keep food down. Unknown at the time was the cancer was leeching every nutrient out of my body. By the way the weight loss has been great but I do not recommend this diet plan :-) to anyone.
Several of the tests were gastrointestinal performed by the caring Dr. Mark Anderson. Thankfully, no issues were found. After learning the diagnosis I was and am grateful to know that the cancer had not penetrated my stomach or colon. Dr. A was great and when he found out what was wrong he offered his support and encouragement. This support continues from he and his wife who attend my church.
After my last test with Dr. Anderson I started crying because I knew something was wrong. I was happy he found nothing but upset at knowing something very wrong was happening in my body and I was going down physically without any answers. We knew a lot about what it was not but little about what it was. There was suspicion about my gall bladder but I did not have the typical pain in the area that is associated with these problems. My Dad asked Dr. A what other tests could be done and he ordered one to test gall bladder function. A few days later Dr. A called to say there was a problem with the gall bladder and it would need to come out. He asked if I had a surgeon in mind which I did not. He referred me to Dr. Reza Seirafi. More on this amazing doctor and how I believe he entered the picture in a moment.
In the mean time blood work ordered by Dr. MacLaughlin came back showing and elevated CA125 level. Typically this is an indicator of ovarian cancer, but it is also a good "marker" for other types of cancer. If this was a standard test given every year I likely would have known much sooner that something was wrong. Why such a good indicator of various cancers is not part of a routine exam is beyond my understanding.
Due to the high CA125 Dr. M urged me to contact my GYN, Dr. Dupre. He too has been great. He ordered some tests which appeared to indicate a mass near my ovaries and possibly needing to remove the ovaries or a total hysterectomy depending on what was found. He sees many of my family members and he has been instrumental in finding and/or treating life threatening issues with my sister in law and cousin/sister. I told him there was also possibly a gall bladder issue and he coordinated with Dr. Seirafi.
I went for the consult before surgery with Dr. Seirafi and liked him immediately. He is very caring and thorough and gives you complete information. He is unlike any surgeon I've ever met. He did a general exam and whether I am right about this next part I'm not sure, I never asked him. As he did an exam his face seemed to indicate that he was suspecting something else. He then suggested a contrast ct scan before the surgery. I agreed and began to cry telling him I just wanted to know what was wrong and get well. He was incredibly kind and caring and spent as much time with me as I needed that day. I left feeling afraid of what would be found but confident in my doctors.
I had a busy day before surgery. Pre op at Baptist East where they were great and speedy. Dr. Dupre helped arrange the speedy process at Baptist East. Being so tired made this a challenging day. However, everything was done and I had everything ready to go for the next day because everyone was so great at getting things accomplished.
That night Dr. Seirafi called me to have me come earlier so I could receive two pints of blood before surgery. I was so weak and anemic the blood would be essential for me to even have the surgery. Later my two brothers went to donate blood to replace what I had used.
I arrived at the hospital on April 28, 2011 and Dr. S met me to describe a change in plans which I believe came from the review of the ct scan. He had personally gone to pick up the cd of my scan to review before surgery. Instead of laparoscopic surgery they were going to "open me up" to see clearly what was going on. I have a railroad track scar from about 2 inches above my naval to just above my pubic bone. So they really looked. Just before they took me back my room was filled with family and friends. I was so overwhelmed by the outpouring of love and support I started to cry. Everyone including my nurses held hands with us all in a circle and my brother prayed. This amazing support continued throughout my surgery and days after and continues even today. It became slightly humorous with my doctors and staff because there were so many people there for me there was no space left in the waiting area.
During surgery Dr. S. and Dr D tag teamed and they unfortunately found cancer. My specific diagnosis is in the "short version" above. Because it had spread they took out what they could which were my ovaries. There were small tumors over the intestines which made it impossible to remove and the appendix was not removed. Dr. S and Dr. D came out to tell my family and according to my family they both were somewhat emotional. How wonderful it is to have such caring doctors. They delivered the devastating news and my family fell apart as one might expect. There is a saying that Sheryl Crow mentions in the video for Martina McBride's wonderful song about dealing with cancer called I'm Gonna Love You Through It. The saying is when someone you love is diagnosed with cancer it's like their family and friends are diagnosed with it too because of the love and relationship. I cannot describe the impact on my family and friends during the days and weeks after my surgery because it is too difficult for me to go there at this time. Seeing what it was doing to them was worse for me than having the diagnosis. There was a lot of crying as you can imagine. Even in that time my friends and my parent's friends stayed to comfort my family in the hours and days after the surgery. That support is priceless.
I was put in ICU where I received wonderful care. The joke again became they had to move me to a "regular" room because my friends and family were over taking the waiting area. I was pretty out of it but the night of the surgery Dr. S and Dr. D came to see me and to tell me what they found. It was devastating then and for about a month after my surgery. We all cried and my pastor Jay Wolf was there after having been on disaster relief helping tornado victims all day. He prayed and we cried. We began a new unwanted journey in my family and for my precious friends.
Much of being in the hospital I do not remember, just bits and pieces which might be a blessing. What I do remember is how well I was cared for by the staff. A steady stream of friends coming to see me even though I was primarily out of it 95% of the time.
The night of my surgery I met my cancer doctor, Dr. Reardon. Dr. Seirafi recruited him and he is another amazing physician God has placed in my path. Even before I made the decision about where to have treatment, Dr. Reardon was working on my case. Appendix cancer is very rare, many have never even heard of it. For someone as young as I am to have it is apparently even rarer. Dr. R presented my case a day or two after surgery through a video conference with other doctors to get input about treatment options. Later, after much thought and prayer I decided to use the Montgomery Cancer Center for my treatment. It was the right decision and they have been amazing.
A short note about Dr. Seirafi. Dr. Anderson as a last resort ordered a test that assesses gall bladder function. It showed my gall bladder was functioning about 5% which led to him referring me to Dr. S. I believe God allowed that test to show up this was to get me to a surgeon to discover the cancer. The surgeon he led me to was Dr. S who had only been in Montgomery a few months. He like my other doctors has been beyond anything I could have asked for. Each doctor called me personally to tell me test results and discuss options. Each of them has contacted me to follow up and see how I am doing. I am truly blessed to have them on my medical team.
My diagnosis came later than I would have liked and it can seem confusing as to why I was not diagnosed earlier. Appendix cancer is known as a silent killer because very few people have any symptoms at all before the cancer has spread dramatically. The symptoms if they are present at all result from the damage the cancer is doing to other areas. Dr. Reardon explained that the cancer had been there long before any of my symptoms began. It is scary to think about this, but that is how appendix cancer operates. By the time I had symptoms the cancer had already taken its hold on my body. Another reason NOT to ignore even minor symptoms and your intuition.
