Tuesday, July 23, 2013
Just breathe through it
Life can be busy and life can get pretty stressful. I am learning to just breathe through it. Don't let stress weigh you down.
Monday, July 15, 2013
Cancer Free
First of all, lets all high five each other with the good news!!!
And speaking of good news here's the details from today with a little bit of older, other opinions mixed in. However, before I begin, remember this cancer is not straightforward. I'm not sure any cancer is really straight forward, I mean they all suck but having two different types of primary cancers in an organ as small as an appendix and having one of those being very rare and difficult to treat has been quite a whirlwind. I am just starting to feel confident in my understanding of these two different diseases.
Today started off early with an MRI of my abdomen and pelvis, with and without contrast. The MRI itself wasn't bad, it was the feeling of contrast rushing into my veins that made me uncomfortable. Anyway we had about an hour to run and grab breakfast and then we had our appointment with Holly and Dr. Loggie. We spoke with Holly for a while, going over basic health information and also about what had happened from the beginning up until now. She seemed very optimist with my case. Dr. Loggie came in next. Most of the conversation was VERY high science but here are the highlights:
-I do not have PMP. (this has caused a great deal of confusion for us. These tumors rupture the appendix seeding the abdomen with cancer cells which grow and change and cause very bad things... also know as PMP) I have a chance of developing PMP but I currently do not have it.
- This means I am cancer free. My scans are perfectly healthy, my blood work is normal, I feel great and there is literally no signs of cancer. I'm not sure if that means I'm in remission or what the correct term is but I'm going to go with cancer free.
- This bullet point is very difficult to explain but I'm going to do my best. With mucinous neoplasms there is a very wide spectrum of pathology ranging from very low grade to super scary high grade. I am on the lowest side of the spectrum and it seems it was caught early due to the carcinoid. NOTE: the pathology and cells can mutate and change at any given time. This is unlikely to happen in my case but not out of the question. The way Dr. Loggie explained it to me is that patients in my exact situation have a 25% chance of reoccurrence, aka the cancer reoccurring and invasive treatment being necessary. He had scientific information to back up this information. This means that 75% of patients with a low grade mucinous neoplasm with rupture but with acellular mucin and no cancer cells being found in the pathology of the mucin taken from the abdomen may never have a reoccurrence. He also agreed with Dr. Bartlett and Dr. Sardi that if I am monitored closely with scans and bloodwork that it is highly unlikely that if this should return it would be found at an inoperable state.
- He did an exam and found nothing alarming or abnormal which is reassuring because there is an area in my scar that has knotted up and he put my mind at ease that it is just part of the scar healing.
-Future testing- I will have MRI in 6 months. I need to choose who I want to follow me. If it is Dr. Loggie I will have to fly to Nebraska for all future testing. He works directly with a specially trained radiologist when reading the scans and I get the results immediately. I can also get the MRI in Tampa and send them to Dr Bartlett or I can continue to get CAT scans and send those to Dr. Sardi or Dr. Sugarbaker. But CAT scans have a lot of radiation and I am only 32 so ideally I would like to stick with MRIs. I will need a scan every 6 months for a while and eventually we will move to once a year An exploratory LAP is a strong possibility sometime between 12 and 18 months from diagnosis. The thought behind this is that if a cancerous cells escaped some kind of growth would be visible at that time. This is a bit more invasive that a traditional LAP surgery but not nearly as bad as what I had done in December. He was impressed with how long my incision is.
-Carcinoid.... oh ya, that thing. This situation is in my mind but not nearly as much as the mucinous tumor. Don't get me wrong, I know the carcinoid could come back but I feel confident in my Dr.'s in Tampa and what my surgeon in Tampa said about it not coming back. However, Both Dr. Loggie and Dr. Sardi mentioned that a carcinoid cell could have leaked out too meaning the carcinoid could reoccur inside of my peritoneal cavity. This only adds to the need of close monitoring.
What I take from all of this. I clearly could still have a lot to worry about. There is a 25% chance I could have a reoccurrence and I am dealing with two different types of cancer not coming back. BUT, couldn't we all live with worry about disease and other things that could cause us harm. I wouldn't advise anyone to worry about getting cancer or diabetes, having a heart attack or getting struck by lightning. These are things that we have limited control over. Yes I am at an increased risk of having cancer again but to spend my life worrying about that is just exhausting. It will take a lot of work and I'm sure I'll have moments of anxiety but I choose to live a full life. I choose to live a healthy life. Our health isn't as simple as an annual physical and a jog every once in a while. Our body and mind need total and complete health. This means what we put in our body, on our body, in our thoughts and also exercise, family and friends.
Thank you again for the prayers and support. I am a lucky duck.
And speaking of good news here's the details from today with a little bit of older, other opinions mixed in. However, before I begin, remember this cancer is not straightforward. I'm not sure any cancer is really straight forward, I mean they all suck but having two different types of primary cancers in an organ as small as an appendix and having one of those being very rare and difficult to treat has been quite a whirlwind. I am just starting to feel confident in my understanding of these two different diseases.
Today started off early with an MRI of my abdomen and pelvis, with and without contrast. The MRI itself wasn't bad, it was the feeling of contrast rushing into my veins that made me uncomfortable. Anyway we had about an hour to run and grab breakfast and then we had our appointment with Holly and Dr. Loggie. We spoke with Holly for a while, going over basic health information and also about what had happened from the beginning up until now. She seemed very optimist with my case. Dr. Loggie came in next. Most of the conversation was VERY high science but here are the highlights:
-I do not have PMP. (this has caused a great deal of confusion for us. These tumors rupture the appendix seeding the abdomen with cancer cells which grow and change and cause very bad things... also know as PMP) I have a chance of developing PMP but I currently do not have it.
- This means I am cancer free. My scans are perfectly healthy, my blood work is normal, I feel great and there is literally no signs of cancer. I'm not sure if that means I'm in remission or what the correct term is but I'm going to go with cancer free.
- This bullet point is very difficult to explain but I'm going to do my best. With mucinous neoplasms there is a very wide spectrum of pathology ranging from very low grade to super scary high grade. I am on the lowest side of the spectrum and it seems it was caught early due to the carcinoid. NOTE: the pathology and cells can mutate and change at any given time. This is unlikely to happen in my case but not out of the question. The way Dr. Loggie explained it to me is that patients in my exact situation have a 25% chance of reoccurrence, aka the cancer reoccurring and invasive treatment being necessary. He had scientific information to back up this information. This means that 75% of patients with a low grade mucinous neoplasm with rupture but with acellular mucin and no cancer cells being found in the pathology of the mucin taken from the abdomen may never have a reoccurrence. He also agreed with Dr. Bartlett and Dr. Sardi that if I am monitored closely with scans and bloodwork that it is highly unlikely that if this should return it would be found at an inoperable state.
- He did an exam and found nothing alarming or abnormal which is reassuring because there is an area in my scar that has knotted up and he put my mind at ease that it is just part of the scar healing.
-Future testing- I will have MRI in 6 months. I need to choose who I want to follow me. If it is Dr. Loggie I will have to fly to Nebraska for all future testing. He works directly with a specially trained radiologist when reading the scans and I get the results immediately. I can also get the MRI in Tampa and send them to Dr Bartlett or I can continue to get CAT scans and send those to Dr. Sardi or Dr. Sugarbaker. But CAT scans have a lot of radiation and I am only 32 so ideally I would like to stick with MRIs. I will need a scan every 6 months for a while and eventually we will move to once a year An exploratory LAP is a strong possibility sometime between 12 and 18 months from diagnosis. The thought behind this is that if a cancerous cells escaped some kind of growth would be visible at that time. This is a bit more invasive that a traditional LAP surgery but not nearly as bad as what I had done in December. He was impressed with how long my incision is.
-Carcinoid.... oh ya, that thing. This situation is in my mind but not nearly as much as the mucinous tumor. Don't get me wrong, I know the carcinoid could come back but I feel confident in my Dr.'s in Tampa and what my surgeon in Tampa said about it not coming back. However, Both Dr. Loggie and Dr. Sardi mentioned that a carcinoid cell could have leaked out too meaning the carcinoid could reoccur inside of my peritoneal cavity. This only adds to the need of close monitoring.
What I take from all of this. I clearly could still have a lot to worry about. There is a 25% chance I could have a reoccurrence and I am dealing with two different types of cancer not coming back. BUT, couldn't we all live with worry about disease and other things that could cause us harm. I wouldn't advise anyone to worry about getting cancer or diabetes, having a heart attack or getting struck by lightning. These are things that we have limited control over. Yes I am at an increased risk of having cancer again but to spend my life worrying about that is just exhausting. It will take a lot of work and I'm sure I'll have moments of anxiety but I choose to live a full life. I choose to live a healthy life. Our health isn't as simple as an annual physical and a jog every once in a while. Our body and mind need total and complete health. This means what we put in our body, on our body, in our thoughts and also exercise, family and friends.
Thank you again for the prayers and support. I am a lucky duck.
Sunday, July 14, 2013
Another big day tomorrow
Sean and I will be meeting with Dr Loggie tomorrow after an MRI. He will discuss my blood test results, MRI results and the results of the special testing he had done on my pathology slides.
Any prayers, positive thoughts, Etc. you can said my way is very much appreciated.
Any prayers, positive thoughts, Etc. you can said my way is very much appreciated.
Sunday, July 7, 2013
Goals and Gratitude
I watched two documentaries this weekend. Forks over knifes and Happy. I definitely recommend both. Watching Happy was so powerful. It is amazing how people with what we would consider so little are SO happy and I look around at so many people who have SO much and are not nearly as happy as the people with less. I took a lot away from the film but what I want to concentrate on this week is the act of unsolicited kindness and finding things I am passionate about, espciallay things that challange me.
Kindness: Human beings thrive on doing things for others. We all know how good it feels to do something for someone, especially when they are not expecting it. It can be as simple as holding a door for a stranger or buying coffee for the person behind you at Starbucks ( or your local organic coffee shop :) The options are endless and I plan on doing more and more kind things for friends and strangers.
Passion: Please don't get me wrong, I have plenty in my life that I am passionate about, especially when it comes to my family but I know I am missing something that challanges me. I grew up playing competitive soccer. It was my life. I loved practicing. I love getting better and I loved challenging myself. I loved the feeling of walking off of the field knowing I played my heart out. As I have reflected on my life these past few months I am realizing that maybe I lost a part of myself when I stopped playing. When something is such a big part of your life and then suddenly it is not, you do loose a part of yourself. And I never really replaced it. Since I stopped playing I have remained active but nothing has come close to the committment I had when soccer was in my life. I'm not sure I'm going to reactivate my soccer career but I need to find something. I have been taking yoga classes and I really like it. I am thinking about coaching soccer again. I really loved that too I just know that I need something in my life that challanges me and that I am passionate about.
And lastly, giving thanks to what we have is something that should be a part of all of our lives. Seriously, I know that I am extremely blessed and even in my doom and gloom moments, just concentrating on all that is good can really help. I have started a gratitude journal and plan on wrting in it often, even if it is a little list of what was good that day.
Tuesday, July 2, 2013
Just Be
I have learned that I have been living a life centered around doing. I have done a great job at doing, doing, doing. Whether it was work or sports or social or anything really.... most of my life I have been a people pleaser and a "just do it" kind of gal. My new outlook on life, on my life, is to just be. I want to feel and trust what I want in every aspect of my life. There is no right thing to do, there's only what feels right. This is a very hard habit to break. VERY HARD. I find myself having to talk myself into it being ok to do or not do something. It sounds so silly but I've spent my life doing a lot of things that I felt I had to do, or that I should do. I know this will aide in my quest for optimal health. Our mind has so much control over what goes on inside of our body and I struggle with this area a lot.
I've been dealing with a lot of anxiety over my illness. Though I believe I am well and healthier that I've ever been, I know there's that chance of the ugly beast coming back. I will overcome these fears and get to a point where I have a special place in my mind for these fears and I will tuck them away and live my life with no fear.
Our bodies have an incredible way to heal from the inside out.
P.S. Isn't my blog Pretty :)
I've been dealing with a lot of anxiety over my illness. Though I believe I am well and healthier that I've ever been, I know there's that chance of the ugly beast coming back. I will overcome these fears and get to a point where I have a special place in my mind for these fears and I will tuck them away and live my life with no fear.
Our bodies have an incredible way to heal from the inside out.
P.S. Isn't my blog Pretty :)
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