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Category Archives: relapse

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

Mast Cell Beach Experiment Nearing the End

10.04.14

Newton’s Third Law states for every action there is an equal and opposite reaction, the same can be said of Mastocytosis and mast cell diseases. When you make a change to one area there is often an equal or bigger reaction in another area, since we are dealing with hypersensitive cells. Think of it as cause and effect. I picture myself standing in the middle of a giant teeter totter trying to balance both side…. while juggling. 😉

Ups and downs

Over the last several days I have been able to successfully reduce the dose of steroids, yippee! The effect has been low blood sugar, very low. I normally have low blood sugar but steroids can raise sugar. Over the last year my body has compensated but with the reduction in steroids I have really experience that equal and opposite reaction. While decreasing the steroids my blood sugar has routinely crashed into the low 50’s three or more hours before the next TPN dose is due. This has been problematic as I typically run 16 hours on TPN and only 8 hours off. Three hours really cuts into those 8 precious hours of untethered freedom. If a normal person was struggling with some low blood sugar they would eat a snack or drink some juice but I don’t have those options available to me. I tried to put some sugar water in my feeding tube and although that did work to raise my numbers for about an hour the reaction was I was very sick for 2 days. I know they make sugar pills but that is essentially the same thing as sugar in the tube. So my remaining option, directed previously by my doctors office, was to extend the amount of time that I am on TPN to 18 hours on. It was disappointing but over the next few days my body adjusted and I was able to reduce the running back down. Additionally, I was able to reduce the time even shorter than I had been able to do over the course of the last year. I’m currently running 14.5 hours a day and with the direction of my doctor I hope to be able to get to 12 hours on and 12 hours off.

Nicole left today and Lee flies in tomorrow. We will go back home in a few days. Once he is in town I will try some formula again. The time has passed much quicker than I thought it would but I miss my family tremendously. They have all worked very hard completing tasks that can’t be done when I am around to prepare our home to put be on the market. I have pretty new floors in about half my house (with help from Steve Boxberger) The floors are formaldehyde free, low VOC, a green product and look beautiful. My family has also restained the window ledges, painted baseboards, held a garage sale (with a lot of help from Kayla Thompson, Cyndi Lackey, Twyla Roe, Caryn Adams, Lindsey Foster, and Nita Smith) and completed a host of other projects. They are looking forward to some well needed rest.

One Year Anniversary of Mastocytosis Relapse

As much as I miss my family I am also nervous to return. The mast cell patients who live in the area have really been struggling this fall flare season. It has now been a year ago that I experienced anaphylaxis that sent me to the ER after a photo shoot, life has not been the same since. That is not an anniversary I want to celebrate. I can think of a least six nights over the past year that I honestly did not expect to make it to see the sunrise. Memories like these are still too fresh. The suffering has been real and I don’t want to suffer like that again especially after feeling so much better. I know how many of you love the music videos I have posted in the past. This one sums up my past year, it is at the end of the post

Redemption

The problems have been ever present but so has my Savior and Redeemer. Since being here at the beach I have made progress in the following areas

I don’t have to wear a mask outside
Throat, lip, and tongue swelling is gone
No numbness or tingling
No flushing or redness- except a mild sunburn:-)
No night sweats
Hand and feet swelling is gone
I’ve reduced my steroids
Face and abdominal swelling is reduced- probably from the reduced steroids
I’ve shortened my TPN running time – meaning my pancreas is regulating insulin better
No nausea or headaches
Abdominal and back pain greatly reduced
Energy is increased to a normal level
I am able to exercise every day and regained some muscle tone
Food is smelling good instead of making me want to gag
No itching or hives

I have to go home to get more TPN, without it I have no food. We are praying for the best and preparing for the worse. This month has given me a glimpse of how my condition will likely improve after our move. There is no cure for Mastocytosis but God has shown us a place that will help me improve long term, LOVE that guy!.

At the moment I have all I need—and more! …. And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus. Now all glory to God our Father forever and ever! Amen.Phillipians 4:18-20

Hope and healing,

Christal

Stephen Curtis Chapman Long Way Home

I set out on a great adventure
The day my Father started leading me home
He said there’s gonna be some mountains to climb
And some valleys we’re gonna go through

But I had no way of knowing
Just how hard this journey could be
Cause the valleys are deeper
And the mountains are steeper than I ever would have dreamed

But I know we’re gonna make it
And I know we’re gonna get there soon
And I know sometimes it feels like we’re going the wrong way
But its just the long way home

I got some rocks in my shoes
Fears I wish I could lose
That make the mountains so hard to climb
And my heart gets so heavy with the weight of the world sometimes

There’s a bag of regrets,
My should’ve beens, and not yets
I keep on dragging around
And I can hardly wait for the day I get to lay them all down

I know that day is coming
I know its gonna be here soon
And I won’t turn back even if the whole world says I’m going the wrong way
Cause its just the long way home

When we can’t take another step
The Father will pick us up and carry us in His arms
And even on the best days, He says to remember we’re not home yet
So don’t get too comfortable
Cause really all we are is just pilgrims passing through

Well, I know we’re gonna make it
And I know we’re gonna get there soon
So I keep on singing and believing
What all of my songs say

Cause our God has made a promise
And I know that everything He says is true
And I know wherever we go
He will never leave us
Cause He’s gonna lead us home

Every single step of the long way home
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)
(We’re just taking the long way home)
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)
(We’re just taking the long way home)
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)
(We’re just taking the long way home)
(Keep going, we’re gonna make it)
(I know, we’re gonna make it)

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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

Mast Cell Beach Experiment Day 20 Clean Air

09.30.14

Today I took my parents to airport and picked up my friend Nicole to be my next babysitter 🙂 Update on a couple of weird new things going on. The smell of food cooking over the past year has either been neutral, meaning not good not bad, or has instantly made me start gagging, usually depending on the exact food. Over the last few days food has started to smell good to me. Then today , for some reason, I am craving Reese’s Peanut Butter Cups. Although I know good and well from past experience what will happen to me should I give into these temptations I think it is a good sign that my body is beginning to see food a little differently. Hopefully it is preparing itself to start working again.

Prednisone update 14.5mg/day

Travel Accessories

I have received many questions about a couple of the items I brought with me to the beach, specifically about my air purifier, the masks I wear, and my vacuum. I am completely aware of how strange it sounds to most people that I travel with an air purifier but I live with a strange disease that make it a necessity. Many of the questions I have received are from others who have a mast cell disorder and have been unable to travel for years or from people who just want to live a healthier life. Many of you are planning trips to the beach and other locations to see if it improves your health. I will be doing an end if trip review and FAQ post at the end of the beach experiment so send me your questions and I will try my best to answer them. For today I will talk about these products that make travel possible for me and I hope in sharing this that you too will be able to travel soon.

Triggers

We have already talked about the importance of clean water in our first in an ongoing series on reducing chemical exposure. You can read about that here if you missed it. As a mast cell patient I need to control any and all known triggers. Triggers are anything that can cause the mast cells to dump their hundreds of chemicals into the blood stream. Everyone has mast cells, they are part of our immune system. When you come in contact with something that you are allergic to or your body thinks is an invader, your mast cells get agitated and that is when the chemicals are released. Once the chemicals like histamine, heparin, tryptase, and prostaglandins flood your system you have allergic type responses such as sneezing etc. When you have too many, like I do, or they are hypersensitive this chemical dump can make you very sick and it can even be dangerous; think peanut allergy. Avoiding triggers is of primary importance.

What looks like this to some people….

Feels like this to come one with a hyperactive immune system.

Clean Air

Last year, after experiencing anaphylaxis for no apparent reason that did not resolve, my doctor ran all sorts of tests. Something like 13 vials of blood were taken. Among the tests various environmental allergies were tested. A couple tests came back positive only one of which is a problem in Oklahoma, the dreaded cedar! Cedar is unusual as it pollenates in the winter, typically November through March where I live. As Cedar season was approaching and knowing how bad the preceding years had been, we knew a change needed to be made. We needed to order an air purifier but which one.

Types of Air Purifiers

I researched and read reviews until I thought I would go cross eyed. I knew from the past that there are several types of purifiers.

Ozone- not so good for myself or other mast cell patients I know.
Ion- very expensive but quiet and had good reviews. I ordered one of this type first. From the moment I turned it on it made me sick. Literally, I became very nauseated. After repeated attempts with the same response, we sent this one back.
UV lights- mostly designed for whole house central air and heating but some small portable units. I found inconsistent reviews as to their effectiveness.
Filtration- These varied greatly from standard air filters, HEPA, HEGA, charcoal, and so on. This is what has really worked for me and my family.

And the Winner Is…

I chose the Austin Air Jr. as it was going to be in our bedroom. I love it!!! Filter costs were reasonable. This little guy is amazing and has made a big difference. We have taken it on trips with us “just in case” and have needed it every time. I won’t travel with out it. I love that it has 4 different types of filters including one for fragrances which had been a life saver in hotels where there was a heavy smell of cleaners, perfumes, etc. you can read more about it here

Or here

http://www.achooallergy.com/austinallergymachine.asp

Right now Achoo allergy is having 10% off with code fall14
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They also offer a bigger unit if you have more square footage to purify.

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Masks

I have a love hate relationship with masks. I love that I can get out more when I use them and I love that I don’t usually get additional swelling when I wear them but I hate that people point and stare. I just had to choose to let that be their problem. I try to use those moments as educational teaching moments when the times arise. Surprisingly, I get a lot of questions about if I am a prepper and it’s the end of the world or if I’m going to rob the store? What?? I need a funny ice breaker in those instances. I’ve thought about “No, I’m a superhero and this is my disguise”. I use these N95 masks they are rated as surgical, they have a vent which makes them TONS cooler on your face, and filter 95%.
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Vacuum

I vacuum everyday at home. It really helps keep the allergens down. Here at the beach and with my pooch miles away at home I don’t have to vacuum everyday but every couple for sure. I don’t normally take my vacuum when I travel but being gone a month I knew it would be needed. The biggest thing about vacuuming, you need to make sure you are not just recycling the dust. By this I mean you suck it up, it goes through the filter, then it comes out of the back of the machine to simply become airborne again. I have had a lot of different machines specifically made for allergies over the years. My Dyson is the best, hands down, and I will never own another brand again! My family used to have to vacuum for me while I was gone or on the other side of the house. With the Dyson I can do it myself with out sneezing and it is very light. It is very powerful. When I got it, I did a test. I ran my old vacuum first and then ran the Dyson. In theory the floors were clean so I should not have picked much up. I filled the tank one and a half times. I was happy and grossed out all at the same time.

These products have been an investment in our health and my whole family has noticed a big difference. The first thing people say to me when they see the price of these items is that is too much money. It has taken sacrifice to make these purchases and we have had to go with out a lot of other things but we made the choice to try and improve my situation and it works. I use them at home and travel.

Hope and healing,

Christal