Monday, October 19, 2009
Update
Well, here we are again. We had waited three months from the last visit to get an update on my medical condition. On October 15th, I had a ct scan with contrast dye, blood work, and a doctor's appointment. Everything seemed to go smoothly, no allergic reactions, etc. My doctor was out of town, so I saw her PA. My mom came with me, and that eased my stress. I received the normal flu vaccination, and we got the results from the ct scan. The nodules that were once visible in May, were not visible at this time. From my mom and my understanding of what the PA explained, is that all my blood work levels had remained the same as in May, but we could no longer see the nodules on the scan. We are not sure what to make of that. It does not mean they aren't there, they are just playing hide and seek. And, the injections that I am on are controlling my symptoms, so our main goal now is to maintain a comfortable life. It seems to me that we have control of the situation at this time. Other than normal three month checkups, and my injections, there is nothing we need to do at this point. Which is a big sigh of relief. I am tired, but that is my body telling me to slow down. We will continue to keep everyone updated. Thank you for all of your thoughts and prayers!
Thursday, July 23, 2009
So, my doctor at Huntsman called me Tuesday night while I was at work and left me a message. She had spoken with her team about my situation, and they agree with her. They want to monitor my progression of my tumors every six months with CT scans and blood and urine tests. When they do progress, then they will take action. But, until then, it's a waiting game. That sounds unusual: wait for the cancerous tumors to progress before we treat. Story of my life! We are hanging in there. I love my husband and kids, they have been so patient through all of this so far. Anyway, today is a new day.
Friday, July 17, 2009
Erica's Medical Journey
Okay, so I am new at this. Please bare with me. I wanted to start this blog not just to document my journey, but to also educate and help people understand my condition.
The story begins around May of 2007. I started feeling less like my energetic self, and more exhausted, warn out, fatigued, etc. You get the general idea. So, I made an appointment with my physican. They did the normal routine blood work and exam. While doing the exam, the P.A. noticed a small (about the size of a ball point pen tip) mole on my stomach next to my belly button. He asked to do a biopsy, and I agreed. Well, two days later he called to say my thyroid tested high so I needed to be on a supplement. And, the biopsy showed pre-cancerous cells. He needed more of the tissue. The next week, I went in for more removal of the tissue. Long story short, I went, over a six week course, and had five more areas (moles) removed.
I have had a few basic things that needed medical attention after that, (headaches, tendonitis, and such) but nothing severe until last October 2008. I haven't had much luck shaking the fatigue over the year and a half, but just let it go. But, it got to the point where I was not functioning for my family, my job, and everyday activities. I was referred by my Obgyn (not the most knowledgeable on this matter) to a Thyroid Specialist in the office. Same thing was done; put me on supplements for the thyroid, and Zoloft for anxiety. Isn't that typical!
Anyway, I experienced some unusual symptoms after that that I thought was related to my new medicines. Severe diarrhea, weight loss(not good for me!), hair loss, flushing, dizziness, racing heart, vertigo, etc. By March, it was uncontrollable. So, by shear luck, I called the insurance company to find a preferred provider in the thyroid department and they set me up with an endocrinologist. She got right to the point. We started what seemed like endless testing in April. I have had blood work, urine tests, then a CT scan. The end of April, I had an OctreoScan, which is like an MRI. Between my thirtieth birthday May 3, 2009 and Mother's Day may 10, 2009, I had a CT scan with contrast dye. We found out I am allergic to the contrast! That was the key scan that led to the diagnosis: I have Carcinoid Tumors in my liver. Carcinoid tumors are cancer in the lining of the gastrointestinal tract. They are very rare, and slow growing. It takes a long time to diagnose. I was lucky enough to have an alert doctor catch them early, while I am still young. After that, more testing. An Echo on my heart May 15, 2009, a Colonoscopy May 26, 2009, an Endoscopy and internal ultrasound June 2, 2009. May 13, 2009 the Endocrinologist started me on Octreotide injections 3x a day until further notice. It is not pleasant, but I am hopeful that this prolongs my survival. And, it has diminished my symptoms immensely.
July 16, 2009 was my first meeting with Dr. Kim Jones, my oncologist. I am now officially a patient at the well-known facility: Huntsman Cancer Institute. The course of action at this time is to monitor the tumors in the liver, keep on my injections, and keep my appointments and scans every three months or so. At this point in time, the tumors are too small to treat with radiation or chemotherapy. My options are limited. Surgery is not an option, because of the location and size. If and when they progress (they do eventually), the treatment would be hiatal artery chemoembolization. That means they would block off the main blood vessel that supplies and feeds the cancer cells in my liver. At that time, they would also direct chemo into my liver. Another option is radiation beads into the liver. Same effect as the chemo, but radiation beads can attach more thoroughly to the many veins that feed these cells. After all this, eventually I would need a liver transplant. As Daniel and I read in a magazine, I need to replace my engine...
Time frame wise, I don't like to look at the negatives. It could be five years, ten years, fifty years. Who knows. And, I am so young and healthy otherwise, that I have a really good chance of beating the odds and statistics. I have a good habit of doing that anyway.
Through all of these trials and tribulations, I have stayed positive and optimistic with the help of a wonderful family, friends, and a lot of prayer. I have faith that God has chosen me for a reason to go through what I am. And, I will survive one way or another. I am thankful for everything I have in my life, even this disease. It has opened my eyes to what is important, and what is not. Family and faith is everything to me, and I want to let everyone know that we are growing a stronger bond each and everyday. I will keep everyone upto speed as much as I can, when I can. My next appointment is October 15, 2009. I will be having a Ct scan with contrast, and office visit with the oncologist to check on the progression of the tumors. Thank you for all of your love and support! I hope this has helped in some way, I know it has for me.
The story begins around May of 2007. I started feeling less like my energetic self, and more exhausted, warn out, fatigued, etc. You get the general idea. So, I made an appointment with my physican. They did the normal routine blood work and exam. While doing the exam, the P.A. noticed a small (about the size of a ball point pen tip) mole on my stomach next to my belly button. He asked to do a biopsy, and I agreed. Well, two days later he called to say my thyroid tested high so I needed to be on a supplement. And, the biopsy showed pre-cancerous cells. He needed more of the tissue. The next week, I went in for more removal of the tissue. Long story short, I went, over a six week course, and had five more areas (moles) removed.
I have had a few basic things that needed medical attention after that, (headaches, tendonitis, and such) but nothing severe until last October 2008. I haven't had much luck shaking the fatigue over the year and a half, but just let it go. But, it got to the point where I was not functioning for my family, my job, and everyday activities. I was referred by my Obgyn (not the most knowledgeable on this matter) to a Thyroid Specialist in the office. Same thing was done; put me on supplements for the thyroid, and Zoloft for anxiety. Isn't that typical!
Anyway, I experienced some unusual symptoms after that that I thought was related to my new medicines. Severe diarrhea, weight loss(not good for me!), hair loss, flushing, dizziness, racing heart, vertigo, etc. By March, it was uncontrollable. So, by shear luck, I called the insurance company to find a preferred provider in the thyroid department and they set me up with an endocrinologist. She got right to the point. We started what seemed like endless testing in April. I have had blood work, urine tests, then a CT scan. The end of April, I had an OctreoScan, which is like an MRI. Between my thirtieth birthday May 3, 2009 and Mother's Day may 10, 2009, I had a CT scan with contrast dye. We found out I am allergic to the contrast! That was the key scan that led to the diagnosis: I have Carcinoid Tumors in my liver. Carcinoid tumors are cancer in the lining of the gastrointestinal tract. They are very rare, and slow growing. It takes a long time to diagnose. I was lucky enough to have an alert doctor catch them early, while I am still young. After that, more testing. An Echo on my heart May 15, 2009, a Colonoscopy May 26, 2009, an Endoscopy and internal ultrasound June 2, 2009. May 13, 2009 the Endocrinologist started me on Octreotide injections 3x a day until further notice. It is not pleasant, but I am hopeful that this prolongs my survival. And, it has diminished my symptoms immensely.
July 16, 2009 was my first meeting with Dr. Kim Jones, my oncologist. I am now officially a patient at the well-known facility: Huntsman Cancer Institute. The course of action at this time is to monitor the tumors in the liver, keep on my injections, and keep my appointments and scans every three months or so. At this point in time, the tumors are too small to treat with radiation or chemotherapy. My options are limited. Surgery is not an option, because of the location and size. If and when they progress (they do eventually), the treatment would be hiatal artery chemoembolization. That means they would block off the main blood vessel that supplies and feeds the cancer cells in my liver. At that time, they would also direct chemo into my liver. Another option is radiation beads into the liver. Same effect as the chemo, but radiation beads can attach more thoroughly to the many veins that feed these cells. After all this, eventually I would need a liver transplant. As Daniel and I read in a magazine, I need to replace my engine...
Time frame wise, I don't like to look at the negatives. It could be five years, ten years, fifty years. Who knows. And, I am so young and healthy otherwise, that I have a really good chance of beating the odds and statistics. I have a good habit of doing that anyway.
Through all of these trials and tribulations, I have stayed positive and optimistic with the help of a wonderful family, friends, and a lot of prayer. I have faith that God has chosen me for a reason to go through what I am. And, I will survive one way or another. I am thankful for everything I have in my life, even this disease. It has opened my eyes to what is important, and what is not. Family and faith is everything to me, and I want to let everyone know that we are growing a stronger bond each and everyday. I will keep everyone upto speed as much as I can, when I can. My next appointment is October 15, 2009. I will be having a Ct scan with contrast, and office visit with the oncologist to check on the progression of the tumors. Thank you for all of your love and support! I hope this has helped in some way, I know it has for me.
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