The following is the first post of my blog Jenesasjourney.blogspot.com. I was diagnosed with TWO types of appendices cancer when I was 31, just 2.5 years ago.
“Back story, starting in May of 2010 when I was about 20 weeks pregnant with Liam I began having intermittant, horrible pain in my lower, right abdomen. It would come on suddenly and last anywhere from 5 minutes to 30 minutes. The pain happened a handful of other times during the pregnancy (mostly at the end when my belly was large). This was chalked up to Sciatic pain, UTI and just normal pregnancy pain. The pain continued very intermittently, but when it happened it hurt! Between then and now I saw my primary care dr (who said I had a vitamin B difficiency) and my OB-GYN who ran a few non-invasive tests. Most recently, I had an HSG (which showed a blocked fallopian tube) and a completely normal colonoscopy done by a GI DR.
But I still needed answers so we scheduled a surgery with my wonderful OB-GYN which took place on 11/13/12. As soon as the surgery started they saw that my appendix was very large. The called a general surgeon who came and took it out and sent it to pathology. I recovered quite easily and began to forget about the situation, assuming that all that time it was my appendix.
Day 1 11/19/12
I received the news that no one ever wants to get. 2 cancerous tumors were found in the pathology of my appendix….. 1 neuro endocrine carcinoid and 1 mucinous neoplasm. That feeling that I had was one that I would NEVER wish on anyone. I was a mess. I felt like it was an immediate death sentance. All I could think about were my two babies. How could they grow up without their mother? (10 days out I now realize that was probably the initial shock) I called Sean, my mom, dad and two sisters. Everyone came over (that lived in town). We just cried. It was awful. Even though I clearly had this for years…. life had changed in an instant.
This was a bad day. My skin was literally gray, my eyes where sunken in and I was a serious MESS! I was stuck with my thoughts. I refused to go online and research in fear of what I may find, so I just fought with my thoughts. I was praying for comfort; for strength; for calmness but that day was not my best day. Ironically, this all started happening during Thanksgiving week. (2011 Thanksgiving was a HORRIFIC nightmare with Liam’s asthma attack on the cruise ship…. air ambulance to All Children’s Hospital…. ) I just want to note that Ava is amazingly sweet. She sang to me after my initial surgery to “heal my boo boos” and her songs continued during this hard time.
Day 3 and 4
Through amazing friends, we were able to get in to see one of the best oncologist in the country, who happens to specialize in Carcinoid tumors, in just 2 days. Though he didn’t have anything but the initial pathology report and post operative notes we had a good meeting. He ordered blood work, urine analyis, CAT scan and an octreotide scan ( you may have to google that last one 🙂 At this point, I was still very emotional. The only thing I knew was that I had two different tumors in my now removed appendix, but there was so much unknown. Had either spread? What kind of treatment is coming? Seriously, 100s of questions and fears and thoughts were racing through my head. The Dr. told me that without seeing the scans he couldn’t be certain if the tumors spread or not but his experience leaned towards no. (there was a glimpse of hope) My amazing mom took over Thanksgiving dinner that was scheduled to be at my house with 35 people I was just in a bad place. I couldn’t even think of cooking and she was happy to do it. One of the bad things that had happened since “the news” is I had no appetite. I couldn’t eat food that I typically love. I was afraid anything I put into my body was going to make the cancer worse or cause it to grow. I know how ridiculous that sounds but it was/is a real fear. How did this happen? How did I get cancer? Was it something I could have prevented? Because of the surgery on the 13th (I may have lost 4 or 5 pounds) and my now nonexistant appetite I was beginning to loose weight. Thanksgiving was really nice. Everyone was so sweet. There was never an “elephant in the room”. I never felt like the one everyone felt sorry for; there was just a lot of love. I only had one breakdown (that only Sean noticed because he walked into our bedroom and found me sobbing). It was just so hard to see everyone together, wondering if I’d be there next year.
Day 5, 6, 7
The next 3 days were uneventful. I tried to go out and not just sit at home, but being in busy or loud places made me so anxious. Like border-line panic attack. I will say that prayer is the one thing that has helped get me through this. We immediately had armys of people praying for me. It’s overwhelming to feel that much prayer, but in a VERY good way. We received a lot of comforting, faithful advice and I started to relax. A little. By this time I’m guessing I had dropped another 5 lbs.
I was supposed to have both of my post opperative appointments this day. 1 with the general surgeon who did the appendectomy and the other with my Dr who did the laparoscopy. However, I had yet to hear back when my CAT scan was scheduled for at Moffitt so I called first thing in the morning to see. Amazingly they fit me in that afternoon. Unfortunately, I had to cancel both post op’s but I felt like I needed to get this scan completed. Even though I canceled both of the appointments, I still spoke to both physicians. The general surgeon was very nice. He seemed to downplay everything. He wasn’t concerned about metastasizing and offered to do the next surgery. How nice. The CAT scan was pretty quick and easy. First they start an IV. (the nurse didn’t tell me until after she did it, that the needle is bigger than normal) Then I had to drink these 3 cups of weird, really cold juice every 20 minutes. They were ice cold and SO sweet. Once I drank them and enough time when by I went in for the scan. Having iodine rush into your veins feels a little weird but other than that it was easy. I just kept my mind full of prayer and positive thoughts. Monday night our friends Alex and Ashley Poptodorova,who specialize in personal training and healthy lifestyles, came over to help us get rid of any toxins that may be in our home. We literally threw away so much stuff.
Day 9 (this was a LONG day)
Tuesday’s schedule was:
arrive at Moffitt at 7AM to be injected with a radioactive solution No I didn’t glow.
go back at 11AM for the 2 hour scan
appointment with surgical oncologist at 2
drop of labs at 330
Day actually went like this…… After getting the radioactive grossness, Sean and I went home. We were up a lot of the night before so we just relaxed. He tried to get some work done and I tried to not glow 🙂 I was drinking tons of water, hoping to get this crap out of my body as soon as possible. The scan didn’t start until about 1130. First 40 minutes I layed flat with my arms above my head. The last 5 or so minutes my arms were shaking…. it was pretty uncomfortable. This machine just (very closely) slowly rotated around my body. Then it took two CT scans. Then it did 4, 10 minute scans. Medical technology is amazing. I wasn’t allowed to eat in between the injection and scan so I was starving when it was finished. Plus at this point I’m down a few more lbs. Even though it’s almost time to head over to the next appointment we run to the cafeteria. I am shocked at how few healthy choices there were there. No organic anything. So much processed, sweet, super unhealthy food. I settled on an apple, a salad with no dressing and a water. (I’m sure this helped with my weight gain goals) We waited for at least an hour in the waiting room to see the Dr. Let me tell you, Moffitt is BUSY. It’s so unbelieveable to see so many sick people… and to be one of them…. So we (Sean, Mom, Dad and yours truly) finally get back and first meet with the surgical oncology fellow. He was nice. Did a quick belly exam and asked lots of questions. My surgical oncologist came in next. She is so tiny and very nice. She seemed confident and experienced. First she told us THAT THE CAT SCAN WAS CLEAN!!! Thank God!!! Huge news!!! She confirmed that the standard of care is a right hemicolectomy surgery as our next step. At this time she presented us with a theory that maybe the carcinoid tumor grew from the margin of the colon down…. which blocked the opening and caused a mucous build up… which turned into this mucinous neoplasm. It sounded good to me and I was praying that she was right. This would be only one cancer not two! Moffitt’s pathology department will decide if she’s right. She also told us that though she could do this surgery laparoscopically, in my case she felt she should do a vertical incision and really get a good look around. At this point I feel like do whatever you need to do, just don’t let me die. They luckily had a surgery cancelation on 12/10 and slotted me right in there. I’m literally excited to have some of my colon cut out. Get this crap out of me! So we drop of the labs minutes before closing time. Sean and I are exhausted. We have a normal night at home and minutes before Ava is going to be (right after her bath) she turns quickly and slams the top of her head into the corner of the stairway handle bar. Seriously. She is screaming, crying and bleeding from her head. I scoop her up, grab an ice pack and off to the urgent care we went. Luckily no concussion and nothing but a little glue to stop the bleeding. She’s fine. Sean and I on the other had are nearly sleep walking. Also, at this point I am forcing myself to eat. I must be strong for this surgery. I’m like a baby, eating every 2 hours.
The only thing we had going on this day was the second part of the octreotide scan. It was basically the exact same thing except they added on 2, seven minute side head shots. At first I thought, “oh no, this isn’t good, they told me it was exactly the same”. So I asked the technician and he said that everyone gets those two extra scans. A few hours later I met the same friends that help us purge all of the toxic stuff at wholefoods. We concentrated on household stuff and general healthy eating. Because of this ordeal I am keeping my sugar intake to an absolute minimum (like only natural fruit sugar) I want to put back on the weight I have lost and be strong for this upcoming surgery.
Day 11 (which is means I am finally caught up to real time)
So today I’m doing better. I’m trying to concentrate on the known and to stop worrying about the unknown. I am praying like crazy and counting my blessings. I feel like it is a MIRACLE that my appendix didn’t rupture. That thing was full of two tumors for at least 2.5 years and it never ruptured. Then I find out that the CAT scan was negative/clean/clear/whatever you want to call it….. No tumors were seen. Huge news! And today we received the call that the octreotide scan was also negative/clean/clear!! That scan is so sensitive that it can pick up microscopic signs of carcinoid tumors and nothing was found. Thank you GOD! Any thank you to everyone that has been praying and thinking of me. I’m feeling better. I’m still scared. I still wonder about the future. I am definitely anxious about this major surgery. I feel like the news this week could have been SO much worse so I am counting my blessings. I have moments of panic and times when I have a self pity party but I guess that’s just par for the course. “