Allergic to the World

It has been a long road since my last post and we have only started this journey. In my last post I shared my drs news that I may have a carcinoid tumor and was in need of a test to find the exact location. The test is called an MRE, which is a fancy MRI with two different contrasts and a glucagon injection in conjunction with some advanced magnetic manipulation of your bodies cells. Due to my Mastocytosis and past reactions to contrasts the plan was to do the procedure under anesthesia, intubate me to protect my airway, place me in a ventilator, do the test and keep me on the vent until the swelling went down. Lee flew in from Oklahoma and took the whole week off not knowing what to expect. We drove five hours one way to the major medical center, checked into the hotel, and got ready for the weeks adventure.

Testing Day 1 MRE

I finally had the test and it went better than expected. I did not need anesthesia but they kept the anesthesiologist just outside the room just in case. I tolerated both contrasts well with premedication. Praise the Lord! We returned to the hotel for the evening instead of returning to the Panhandle area as was reccomended in case of delayed reaction. At 8pm that night I received a phone call from my dr. The MRE had revealed two masses in my intestines that were believed to be malignant. A colonoscopy was scheduled where biopsies would be taken.

Day 2 A New Feeding Tube

This was a pretty easy day. I ask if they would change out the tube without any anesthesia and they did. We went back to the room and watched movies and slept.

Day 3 Colonoscopy

It was a very busy day! A teaching hospital filled with students and a patient with two rare conditions caused lots of activity. After a long hard day the biopsies were not able to be collected as the tumors are on the outside of the intestines. I was kept overnight in the hospital for observation because my heart rate was elevated as I was coming out of anesthesia.

Day 4 What Just Happened?

At 10pm I received a phone call on my floor nurses phone while I was in the hospital. Another MRE was planned to check the liver and pancreas and see if the cancer has spread. They were going to come get me in the night and had a few questions. A consult with surgey was to follow the test to talk about obtaining the biopsies.

No MRE overnight. Blood work started the day off at 5:45 am and from that moment on the flurry of activity never stopped. Morning rounds, visits from the dietician to evaluate my malnutrition level, the TPN department to evaluate my current formula and if was meeting my needs, X-rays ordered to check my PICC line placement, I had no fewer than five blood draws, the admin lady came twice and never did get a chance to say little more than her name before another team would jump in. What began as a 24 hr hospitalization for observation ended with a conference with the chief of colo/rectal surgery who proposed a 2 week hospital stay, the removal of my ilium, cecum, and part of my colon, giving me a colostomy bag until my Mastocytosis inflamation went down (which would pretty much be the rest of my life as inflamation is a chronic standard with mastocytosis), staying on TPN, and not allowing any water by mouth or tube for the foreseeable future. She listed about 10 different reasons why I was going to be a very complicated case…… and that was just to treat one tumor. She was not going to do anything about the other. If there were any more tumors found in the liver or pancreas they would bring in other teams of doctors to handle those. They didn’t have TPN for me for the 2nd day and would not let me use my own. I checked myself out of the hospital against their wishes and we began the five hour trip back to the condo where I am staying.

Before surgery department could come I really felt like the Lord was leading me to begin the process to get into the New Orleans Louisiana Neuroendocrine Tumor Specialists. Lee called them and got me set up in their system. About an hour after leaving the hospital, I got a phone call from the specialists in Louisiana. They gave me a list of what records they would need. They are preparing an email for me with orders for additional tests needed. When I get all of my required info to them the team will review my case. They will either schedule me an appointment to see them, request more testing, or give me other guidance. If they agree to take me my appointment would be about two weeks later. I feel very good about this team and the treatment options they offer. They literally wrote the standards for neuroendocrine tumors. Although I hope I can get the needed tests and I will be accepted, I have the peace the passes all understanding. God has been very active and real through this whole process, I see his fingerprints everywhere and His whispers of love are continually in my ear. We arrived back at the condo and got a very good nights sleep. I am filled with hope as I continue to focus on who is really in control. My Father has got this, he tells me so everyday, all day long, everywhere I go like in these verses from 2 Corinthians 4:16-18 and this song from Mercy Me “Greater”. May you find your source of hope and healing from the Great Physician.

“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.”

Hope & healing,

Christal

The information contained on this blog is not intended or implied to be a substitute for professional medical advice. This is my experience and for informational purposes only. Please seek the advice of your physician regarding treatment for any medical condition.