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What Just Happened?

01.26.15

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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

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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.

Christal
Filed in: carcinoid | feeding tube | PICC Line | Things God is teaching me | TPN
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Thankfulness

12.21.14

The night before Thanksgiving I received a message from my doctor. She suppected carcinoid tumor and wanted me to have an octreotide scan. At my last appointment she had ordered dozens of tests in the hopes of determining what was at the root of my most recent round of medical problems. As the test results began to pour in, some abnormalities were cause for concern. My chromagranin A and gastrin levels were elevated. These test results paired with many of my symptoms give reasonable concern for Carcinoid tumor. This is in addition to my Mastocytosis. I spoke with my hubbie, did a little Googling, made a list of ten things I was thankful for and went to sleep peacefully. That may sound strange to many of you. Why would I be thankful after learning that my doctor suppected cancer. I have walked with The LORD long enough to know that He is in the redeeming business. He has continued to show up and make things work out in ways I never would begin to think of or hope for. Whatever comes my way, I know my Savior will take care of me.

What is carcinoid tumor?

Carcinoid tumor is a rare cancer that is often nicknamed the accidental cancer. Often carcinoid is “discovered” while investigating another ailment rather that being the primary diagnosis. In fact, one in every 200-300 appendectomys reveal a carcinoid tumor. They are most often located in the GI tract and are slow growing. All neuroendocrine tumors, including carcinoid tumors, secrete hormones. However, what they secrete depends upon the type of tumor and the tumor location. These hormones can be measured with blood tests.

Chromogranin A

Chromogranin A (CgA) is a protein that is excreted into the blood and common to most neuroendocrine tumor cells, including carcinoid, and is a general tumor marker. CgA normal range is 1.9-15, mine was 328 or nearly 22 times the high level.

Gastrin

Gastrin is a hormone produced to help with digestion but can be elevated in carcinoid tumors that are located in the stomach, small or large intestines. A normal Gastrin is anything less than 100, my level was nearly 1400.

Octreotide scan

Octreotide scanning is useful to help determine a carcinoid tumor’s location, size, and extent of metastases. On the day of my test, Cheryl drove me to the hospital. We waited with anticipation not only for good test results but that the test itself would not cause any mast cell problems. Radiological tests that require dyes, contrasts, or isotopes of any kind have been problematic in the past. The last thing any of us needed right now was another anaphylactic reaction. I premedicated according to The Mastocytosis Society recommendations and prayed for the best. I informed my tech of my condition and he went to find the radiologist. When you have a rare condition, often medical providers are skeptical that you truly have what you say you do. My family, friends, Cheryl and I prayed over this test and Our Father prepared the way. When the radiologist arrived in my testing room he told me they just had an education the day before where they talked about patients with mastocytosis. Praise The LORD!! He brought several people with him and they were prepared for any possibility. I dosed again with more medication just prior to the injection. Octreotide, a mix of radioactive sailine and a synthetic hormone, was injected into my vein. After waiting to make sure there would be no complications we left the hospital for four to six hours while the octreotide circulated. As it travels through the body, it attaches to the tumor cells where it can be seen on a special imaging machine like the one pictured above. I was placed on that skinny table and slid into a donut looking ring. Two square scanners, one above and below were placed very close to me. The one on top was within one inch of my nose. I had to lay very still while to sensors picked up the radiation I was emitting. Little by little I was backed out of the doughnut creating a whole body image. The next test is similar. I was slid back into the doughnut and the two square scanners were rotated around me creating a 3D image. The tests are repeated for the next two days for a total of three days. The areas that are glowing and bright indicate where the octreotide has been taken up. On the screen I could see my kidneys, liver, and bladder along with an unidentified shape in the intestine area.

Over the last seven years I have had countless people ask me if I have cancer. My answer has always been no, I have mastocytosis, which is in the same category as cancer but instead of my body making tumors my makes too many immune cells. This makes me like a person who has a peanut allergy but to anything that can enter my body either through ingesting it, breathing it in, or absorbing it through my skin. The last few weeks have caused me to think about the possibility of having two rare disorders. Having a high immune system would certainly make me sensitive to the extra hormones that would be produced by a neuroendocrine tumor. Most of the symptoms of carcinoid syndrome mimic Mastocytosis. Could this be what has caused so many complications. According to carcinoid.org small tumors that have not spread can be cured with surgery alone. I wait with anticipation for the radiologist to read the scans, make a report and the doctors to establish my diagnosis.

Hope and healing,

Christal

 

 

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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.

Christal
Filed in: carcinoid | Life with Masto | relapse | Things God is teaching me
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December 24, 2014 - 3:27 pm

Monica - But if we hope for what we do not see, we eagerly wait for it with perseverance. (Rom. 8:25) Praying with perseverance. ❤

Mast Cell Beach Experiment follow up & Illogical Faith

11.26.14

Hello all! It has been several weeks since my last post. I know many of you have contacted me and wondered what happened after the Mast Cell Beach Experiment. First let me say thank you for your well wishes and notes of inquiry. Sorry I sort of left you hanging 🙂

Mast cell beach

My husband flew rom Oklahoma to Florida and helped me gather up all my stuff. We left and began the long trek back home. We made our first pit stop at around mile 150. After we got back in the car I began to feel the familiar pin pricks and hot swelling in my lips. It had been so long since I wore a mask I forgot to put it on when we stopped. I would not make that mistake again. The closer we drove toward home the more itching I experienced. Gradually the nausea returned and about an hour south of the Texas/Oklahoma border I got a couple hives. Two days after being home all my previous symptoms had returned and a few new ones. I had to go back on all the medication I was able to get off of or decrease while I was gone.

Back home

It was good to be with my family but physically I was miserable. By day three I was bed bound again and felt like the life was draining out of me. It became apparent there was no hope of eating or even using a feeding formula any time soon. My husband looked at me and said “we’ve got to get you out of here.”. With cedar pollinating season fast approaching (my worst time of the year traditionally) and my peanut-like allergy to it, we knew we needed to act fast. We had been planning for all of us to move at the end of the school year but we had also planned for many possible outcomes upon my return. My need to move sooner was one possibility we had anticipated. The saddest part would be knowing my family could not join me for several months. Selling the house, getting new jobs for my husband and daughter (not to mention all it takes to be licensed in a new state), and my son finishing high school were all things that would keep the rest of my family in Oklahoma while I made the early move. Thankfully, I knew I had a place to go and that was one of the biggest obstacles. After nearly 21 years as an Air Force wife, I can say I thought I was well prepared for a move with only a few weeks notice but this move presented with several new challenges.

Get Ready…

There was much to do in a short time, I was feeling pretty rough and had very little energy to accomplish my daunting tasks. We needed to get all the normal moving things accomplished but also a whole list of medical considerations due to my condition. Step one: finalize my Florida medical team. I would need my lifeline and only source of nourishment, my TPN. This required a new medical team including a primary care doctor, a mast cell specialist, a hematologist/oncologist, an allergist/immunologist, a compound pharmacy to make my special medications, a home health agency to change my dressings, and an infusion pharmacy to make my TPN and deliver my accompanying supplies. I had done much of the leg work while in Florida but more work was still needed to finalize all the details

Get set….

I met with our realtor and got the big picture of what needed to be done to list the house. She loved the floors my hubbie and his uncle installed in half the house. We needed to pack some things for me to take, some to go to storage and some we could get rid of. I froze some meals for the freezer when I was feeling up to it, left lists of where to buy all their favorite gluten free foods and simply tried to spend as much time with my family as possible.

Mast cell road to healing

Go…

When the day arrived, we loaded up my “mommy van”, as the kids like to call it, and began the journey back to the sunshine state. We were officially on the road to healing. We had no idea a year ago how many times we would make this trip. Along the way it was good to have quiet time with my husband and to walk through detailed plans for the coming 6 months. We finally arrived at my temporary home. We were so blessed to be greeted by my girlfriend, Cheryl. Lee worked hard to get me all moved in and then flew back home.

The new reality

As a former military wife when you get the word of a move you get into a mode. You sort of disconnect and do what needs to be done. Very little emotion is involved simple because there is no time. When you are settled in your new place then the flood gates open. Leaving my children behind did involve quite a bit of emotion, as you can imagine, but with the very real possibility of not making it through another winter in Oklahoma, I knew I would be able to be a part of their lives better from afar. Standing at the airport holding onto my husband as tight as I could, the reality of the situation hit me. Together for the last time for many weeks we just sobbed. I was ugly crying for sure. We will see each other for Christmas we told ourselves but that was of little consolation at the moment. We said our last goodbyes. As I looked into my rear view mirror for one last glimpse of him before I drove away it hit me. I am insane! This makes no logical sence. I am a sick wife and mother who has just left her family and moved across the U.S. by herself. Of course I will have Cheryl and her family and my occasional friends we have become affectionately referred to as Christalsitters. But a hole was left in my heart that would not soon be filled.

Now what?

In the days ahead I would begin to enjoy a slow return of energy. I was happy to say goodbye to my masks and it was good to be able to get out more. I made the trip into Gainesville, with the help of my friend Lisa, to see my new mast cell specialist. My new doctor is pretty amazing. My new home health is on the ball as well. These things coupled with the beach give me reason for hope for the months to come.

Mast cell bubble

Finding your bubble

I understand that the Great Mast Cell Beach Experiment has helped many of you reconsider your environmental surroundings. Many of you are taking trips of your own and some planning moves to other locations where you typically do better. These are drastic measures for a drastic disease. Perhaps you do not have a madt cell disease but are being lead to something that is bigger than you can handle, something that is not logical. My best advise is to do what you need to live the life God gave you, pray unceasingly, and do your research.

Many people have said to me if you are allergic to the world maybe you need to live in a bubble. Most diseases are the same from one place to another, mast cell diseases are not always like that. For a disease that has no cure, avoiding your triggers becomes number one priority. If the house you live in or the part of the country you reside are part of the problem, you may have to consider all your options. If you are heat triggered then Florida, other tropical places and the desert will not likely be a good place for you. Transversely, if cold activates you don’t look north. Consider both what we call true allergies, ones where your body had made antibodies, and also those things that cause a mast cell response. You may be able to find your bubble or that little place that works just for you. On my recent trip to see my new doctor, who is located many hours from the coast, I did experience a return of several symptoms. So for me it is not Florida but rather the beach. While gathering all my records to move, I was reminded that I tested very high positive to all trees, grasses, and weeds. It occurred to me the beach is pretty much absent of those things, coupled with the ocean breezes and the healing properties of the salt water, my seaside retreat has become my bubble.

The Promised Land

All of this is to live the life God has given me, to be able to serve Him, to accomplish the opportunities He has given to me while I wait for the ultimate Promised Land. This may seem strange to us, insane in fact, but in some ways but it is just the way we should live. We have been given many examples in the Bible of people who did something in faith when it was not always logical. I will leave you today with some of my favorite verses from Hebrews that speak of this very topic.

Now faith is confidence in what we hope for and assurance about what we do not see. This is what the ancients were commended for. By faith we understand that the universe was formed at God’s command, so that what is seen was not made out of what was visible. By faith Abel brought God a better offering than Cain did. By faith he was commended as righteous, when God spoke well of his offerings. And by faith Abel still speaks, even though he is dead. By faith Enoch was taken from this life, so that he did not experience death: “He could not be found, because God had taken him away”. For before he was taken, he was commended as one who pleased God. And without faith it is impossible to please God, because anyone who comes to him must believe that he exists and that he rewards those who earnestly seek him. By faith Noah, when warned about things not yet seen, in holy fear built an ark to save his family. By his faith he condemned the world and became heir of the righteousness that is in keeping with faith. By faith Abraham, when called to go to a place he would later receive as his inheritance, obeyed and went, even though he did not know where he was going. By faith he made his home in the promised land like a stranger in a foreign country; he lived in tents, as did Isaac and Jacob, who were heirs with him of the same promise.For he was looking forward to the city with foundations, whose architect and builder is God. And by faith even Sarah, who was past childbearing age, was enabled to bear children because she considered him faithful who had made the promise. And so from this one man, and he as good as dead, came descendants as numerous as the stars in the sky and as countless as the sand on the seashore. All these people were still living by faith when they died. They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth. People who say such things show that they are looking for a country of their own. If they had been thinking of the country they had left, they would have had opportunity to return. Instead, they were longing for a better country—a heavenly one. Therefore God is not ashamed to be called their God, for he has prepared a city for them. ~ Hebrews 1.1-16

If you are a follower of Christ, what are you doing today to live illogical faith?

Hope and healing,

Christal

 

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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.

Christal
Filed in: beach experiment | Life with Masto | Things God is teaching me | TPN
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