About a week ago I received some good news to balance out the bad news we had received the week before. The good news- my calcitonin levels haven't risen in the last eight months! I was so very relieved to hear this as I'm sure other Meddies can understand.
The odd thing was that I was on the verge of having a panic attack waiting to hear these newest results which is so very unlike me. I have NEVER had anxiety about my results before even if I knew they would be bad! Come to find out, my TSH levels were high and my Endo said that can cause anxiety. That might also explain why I've been having such gory nightmares lately too! Lol
Bad news was that my oldest child (21 year old son) got the results of his 24 hour urine test and we are finally at a point where he needs to have surgery for the Pheochromocytomas that are forming. It breaks my heart that my children have to go through this too but thankfully he has a mama who has educated herself on this who will help him through.
My son has decided to have Dr. Jeff Moley in St Louis do his laparoscopic Pheos surgery. This is the man I wish I had asked to do mine and I know in my heart that he will make sure my son doesn't end up messed up like me.
Big B will have the surgery after the New Year when him, his fiancé, and I will drive to St. Louis. I'm honored that at 21 he still wants me to be a part of this.
In other news- my Endo had me quit my 2 liter a day habit of drinking soda which cut out all caffeine and most sugar for me (yes, I've been a real bitch this week!), my Fibromyalgia is behaving itself, my Peripheral Neuropathy is getting worse all the time, and I think my Costochondritis is actually Tietzes Syndrome due to where my pain is located. The other 2 million diagnosis' I have really don't bother me much so they're not worth reporting.
Ahhhhhhh the life of a messed up MEN2a Meddie....gotta love it! Lol
Showing posts with label General Health. Show all posts
Showing posts with label General Health. Show all posts
Saturday, October 20, 2012
Saturday, October 17, 2009
Finding Strength
When I look back to my life five years ago and think about all the things I would let get to me, I can’t help but laugh. Simple things would make me yell, “My life sucks!” Just daily stuff that we all complain about because we can.
Then my whole life was turned upside down in September 2004 when our new family doctor noticed a large lump in my throat and asked me about it. I told him that I’d had it for many years and no one seemed to think it was a big deal. He felt it was definitely a big deal and immediately ordered blood tests and an ultrasound on my neck.
The ultrasound found four calcified nodules on my thyroid and two weeks later I had a fine needle biopsy done. Shortly after that I had my results- medullary thyroid cancer. It is a rare form of thyroid cancer that leads to testing for a rare genetic disorder. Three weeks later those results came back and I was diagnosed with Multiple Endocrine Neoplasia Type 2a or MEN2a as its known.
You would think the bottom would fall out on my world and I would completely collapse in a puddle of tears. Here I am not even thirty years old with cancer, plus a genetic disorder that causes MORE cancer. It set me back on my heels but once I found out I wasn’t going to die within the next 6 months, I knew everything would be okay. I cried some, but then I wiped the tears and went on with life. I knew I needed to because I’m the Mommy and I had to be strong for my kids.
Immediately after my diagnosis we determined that my three children (who were 13, 10, and 2 at the time) needed to be tested for MEN2a as well. It is genetic and each child of a person with this disorder has a 50% chance of having it as well. Blood was drawn on all three kids, we crossed our fingers as we waited, and almost a month later we had our results.
That is when my world felt like it was coming apart. It’s one thing to be told that you have cancer and will have to deal with it for the rest of your life but your babies? How can these perfect little people who are your whole world have to deal with this too? I prayed nightly that some miracle would happen and all three children would come back negative but I knew in my heart that our chances were very slim.
I remember the day the endocrinologist gave me the news like it was yesterday. Her exact words were “Your little one, A, he came back negative so he’s fine and will never have to deal with this” then tears started forming in her eyes and her voice broke “but your other two children tested positive, so they have this and will have to be tested and watched for the cancers”. She cried, hugged me, and told me how sorry she was. I cried only a few tears then straightened up; all I could think was “I’ll be strong because I’m the Mom and I just have to be. They need me”.
In January 2005, I had my first surgery removing my adrenal glands and the adrenal cancer. This put me on steroid replacement for life. Two months before my 30th birthday I became a cancer survivor only to start battling another one.
On March 30th, my oldest children both had thyroidectomies. We hoped that we were getting a jump on the medullary cancer before it could start but when the pathology reports came back after surgery we found that the cancer had already started in both of them. My two amazing children were now cancer survivors at almost fourteen and ten. We got to the cancer in time and they will never have to worry about it again, but they will take thyroid hormone replacement for the rest of their lives.
Two months later I had another surgery this time removing my thyroid (and any cancer there), three parathyroids, and any lymph nodes in my neck and shoulders that we could find to clean out as much medullary cancer as we could. This left me with a U-shaped scar that covers most of my neck and thyroid hormone replacement for good. When you think of what I had going in and what I traded it for, I think I’ve made out pretty well and feel proud of these “battle scars”.
We didn’t get all of the medullary cancer in time but I don’t worry about it. In fact, in December 2007 I found out that the cancer had spread to more lymph nodes in my neck, nodes in both armpits, and six little tumors in my lungs. It's okay though because I know I have at least 5 to 10 years with my children and that is more than a lot of people with cancer get. I’ll take any time I’m given and be more than happy with it because it means I get to watch my babies grow. I wouldn’t miss that for the world.
The way I act and live with this disorder sets an example for how my oldest two children will live their lives with it. Knowing that, how could I ever possibly do anything other than be strong? I will be strong because it shows them how to be strong. I will have hope because it means they will face this with hope. I will love life because in turn they will learn to love life too and if they are anything like their mother, they will remember to laugh even when things get hard.
I may be a mom living with cancer but when it comes right down to it, I’m just a mom… living. I choose to fight for life and live it in the best way I can. I hope you do too.
*I wanted to add that I originally wrote this for an ezine called The Whole Mom but found it again and updated it when I was looking for something to include at Mothers With Cancer. Just in case you see it elsewhere on the web.*
When I look back to my life five years ago and think about all the things I would let get to me, I can’t help but laugh. Simple things would make me yell, “My life sucks!” Just daily stuff that we all complain about because we can.
Then my whole life was turned upside down in September 2004 when our new family doctor noticed a large lump in my throat and asked me about it. I told him that I’d had it for many years and no one seemed to think it was a big deal. He felt it was definitely a big deal and immediately ordered blood tests and an ultrasound on my neck.
The ultrasound found four calcified nodules on my thyroid and two weeks later I had a fine needle biopsy done. Shortly after that I had my results- medullary thyroid cancer. It is a rare form of thyroid cancer that leads to testing for a rare genetic disorder. Three weeks later those results came back and I was diagnosed with Multiple Endocrine Neoplasia Type 2a or MEN2a as its known.
You would think the bottom would fall out on my world and I would completely collapse in a puddle of tears. Here I am not even thirty years old with cancer, plus a genetic disorder that causes MORE cancer. It set me back on my heels but once I found out I wasn’t going to die within the next 6 months, I knew everything would be okay. I cried some, but then I wiped the tears and went on with life. I knew I needed to because I’m the Mommy and I had to be strong for my kids.
Immediately after my diagnosis we determined that my three children (who were 13, 10, and 2 at the time) needed to be tested for MEN2a as well. It is genetic and each child of a person with this disorder has a 50% chance of having it as well. Blood was drawn on all three kids, we crossed our fingers as we waited, and almost a month later we had our results.
That is when my world felt like it was coming apart. It’s one thing to be told that you have cancer and will have to deal with it for the rest of your life but your babies? How can these perfect little people who are your whole world have to deal with this too? I prayed nightly that some miracle would happen and all three children would come back negative but I knew in my heart that our chances were very slim.
I remember the day the endocrinologist gave me the news like it was yesterday. Her exact words were “Your little one, A, he came back negative so he’s fine and will never have to deal with this” then tears started forming in her eyes and her voice broke “but your other two children tested positive, so they have this and will have to be tested and watched for the cancers”. She cried, hugged me, and told me how sorry she was. I cried only a few tears then straightened up; all I could think was “I’ll be strong because I’m the Mom and I just have to be. They need me”.
In January 2005, I had my first surgery removing my adrenal glands and the adrenal cancer. This put me on steroid replacement for life. Two months before my 30th birthday I became a cancer survivor only to start battling another one.
On March 30th, my oldest children both had thyroidectomies. We hoped that we were getting a jump on the medullary cancer before it could start but when the pathology reports came back after surgery we found that the cancer had already started in both of them. My two amazing children were now cancer survivors at almost fourteen and ten. We got to the cancer in time and they will never have to worry about it again, but they will take thyroid hormone replacement for the rest of their lives.
Two months later I had another surgery this time removing my thyroid (and any cancer there), three parathyroids, and any lymph nodes in my neck and shoulders that we could find to clean out as much medullary cancer as we could. This left me with a U-shaped scar that covers most of my neck and thyroid hormone replacement for good. When you think of what I had going in and what I traded it for, I think I’ve made out pretty well and feel proud of these “battle scars”.
We didn’t get all of the medullary cancer in time but I don’t worry about it. In fact, in December 2007 I found out that the cancer had spread to more lymph nodes in my neck, nodes in both armpits, and six little tumors in my lungs. It's okay though because I know I have at least 5 to 10 years with my children and that is more than a lot of people with cancer get. I’ll take any time I’m given and be more than happy with it because it means I get to watch my babies grow. I wouldn’t miss that for the world.
The way I act and live with this disorder sets an example for how my oldest two children will live their lives with it. Knowing that, how could I ever possibly do anything other than be strong? I will be strong because it shows them how to be strong. I will have hope because it means they will face this with hope. I will love life because in turn they will learn to love life too and if they are anything like their mother, they will remember to laugh even when things get hard.
I may be a mom living with cancer but when it comes right down to it, I’m just a mom… living. I choose to fight for life and live it in the best way I can. I hope you do too.
*I wanted to add that I originally wrote this for an ezine called The Whole Mom but found it again and updated it when I was looking for something to include at Mothers With Cancer. Just in case you see it elsewhere on the web.*
Wednesday, October 07, 2009
My Five Year Anniversary
On October 7th, 2004 I was diagnosed with medullary thyroid cancer. Shortly thereafter I was told that someone with it spread as much as mine had was given a 16% statistical chance of making it to 5 years. One doctor told me not to listen to statistics so since then I haven't but I can't help but be excited that...
I've made it to FIVE YEARS!!!!!
I can not even begin to express how excited I am about this. Honestly I never thought the cancer itself would kill me before the five year mark but all the other medical stuff has had me worried. The lack of adrenal glands can get pretty scary (almost dying last year was quite traumatizing) and had me wondering if it was going to cause my time to be up. Making it five more years means my body might be scarred, broken, in pain all the time, and sickly but my spirit is holding it all together just fine. I can't wait for my TEN year anniversary. *smile*
So I just want to thank all my friends who have been with me on this ride. Thank you for the calls, gifts, quilts, love, cards, thoughts, and prayers. You have no idea how much they have meant to me. Thank you for listening to me rant and yes, even cry. Thank you for not giving up even though I know some of you have been scared to death.
Here's to another five years. And then another... and another... and another.... haha.
On October 7th, 2004 I was diagnosed with medullary thyroid cancer. Shortly thereafter I was told that someone with it spread as much as mine had was given a 16% statistical chance of making it to 5 years. One doctor told me not to listen to statistics so since then I haven't but I can't help but be excited that...
I've made it to FIVE YEARS!!!!!
I can not even begin to express how excited I am about this. Honestly I never thought the cancer itself would kill me before the five year mark but all the other medical stuff has had me worried. The lack of adrenal glands can get pretty scary (almost dying last year was quite traumatizing) and had me wondering if it was going to cause my time to be up. Making it five more years means my body might be scarred, broken, in pain all the time, and sickly but my spirit is holding it all together just fine. I can't wait for my TEN year anniversary. *smile*
So I just want to thank all my friends who have been with me on this ride. Thank you for the calls, gifts, quilts, love, cards, thoughts, and prayers. You have no idea how much they have meant to me. Thank you for listening to me rant and yes, even cry. Thank you for not giving up even though I know some of you have been scared to death.
Here's to another five years. And then another... and another... and another.... haha.
Friday, August 21, 2009
Costochon...what?
Chronic Costochondritis is what my last trip to Urgent Care on August 15th left me diagnosed with. It might sound scary but compared to the fact that we thought I was trying to have a heart attack... I'll take it!!
Off and on for the last four months or more I've been getting mild chest pains whenever I get really stressed out. After my adrenalectomy I was told that large amounts of stress were a no-no because my body could no longer produce the adrenaline needed to help my heart deal with it. So since then I've honestly been worried about having a heart attack because I KNEW the stress wasn't going to go anywhere! LOL.
Fast forward to August 13th when I got really stressed out and pissed off at my teenagers thus causing my chest to explode in pain. I can honestly say I have never felt such horrid all consuming pain in my life. Natural childbirth again would have been more enticing! As you can see from the first link, costochondritis is not a surprise when you have fibromyalgia. Of course, it was a surprise to me because I had never heard of it before.
So I have yet another diagnosis, with more pain, that isn't going anywhere to add to the long list now. OY. Is it nap time yet?
Thursday, June 19, 2008
I have spent
the entire day feeling like such a moron for not going into the ER last night. So much could have gone wrong and I KNOW that but stupidly talked myself out of going. The only reason Vin even went to work last night was because I guess I talked him into it (I don't remember any of that though). He has informed me that from now on we do what HE decides with medical situations. I told him I agree and that is the plan from here on out. I have reached the point of being too incompetant to even handle my own care.
I told the endocrinologist about my symptoms and she said it sounds like maybe I had another TIA and a severe reaction to the antibiotic that my regular doctor put me on. She said she didn't see a reason to order a CT scan. She is stumped though as to why I'm still having mini-strokes because we thought that lymph node we removed would stop that but obviously it hasn't. So now we're back to square one with that.
Personally I don't agree as far as the reaction goes but I'm so tired of going through doctors because it feels like they either don't know or don't care. Vin isn't happy with the diagnosis either but he's at a loss as well because it's all just so overwelming with all of my health problems. I feel so bad for him because he has to take care of his 33 year old wife. So not fair.
So what happened yesterday very well could be a in part a severe reaction to the Avelox that I was taking I suppose. To be honest, I'm still really out of it and don't remember much about yesterday. Today things are still foggy, I can't concentrate, and I feel like I'm going to black out but I'm suppose to quit taking the Avelox and if symptoms continue then contact my endo again and she will decide what to do. *sigh*
I really don't know what to do at this point. I have a number of the severe reaction effects from the Avelox AND I have all the signs of a stroke as well. My top lip is also swollen and has been all day. No clue why. I don't know what to do from here. My endo didn't even really seem like she wanted to hear about it you know? Even Vin was upset about that.
I'm sorry to scare all of you and I'm sorry I can't give a straight answer to you right now. It may be a severe reaction to a med or it may have been a stroke. I don't know but unless I can convince a doctor to have a CT Scan done all I can do is sit and wait for the next one. I am really out of it and just can't think clearly. I made Vin go to bed because he needs to work tonight and needs some sleep. He doesn't need to be sitting up worrying about me.
I think I'm going to clean out some email, tell the kids what to fix for dinner, get something to drink (I'm also dehydrated the doctor said), and just lay here feeling all funky. lol. Fuck I can't focus! I hate this so damn much.
the entire day feeling like such a moron for not going into the ER last night. So much could have gone wrong and I KNOW that but stupidly talked myself out of going. The only reason Vin even went to work last night was because I guess I talked him into it (I don't remember any of that though). He has informed me that from now on we do what HE decides with medical situations. I told him I agree and that is the plan from here on out. I have reached the point of being too incompetant to even handle my own care.
I told the endocrinologist about my symptoms and she said it sounds like maybe I had another TIA and a severe reaction to the antibiotic that my regular doctor put me on. She said she didn't see a reason to order a CT scan. She is stumped though as to why I'm still having mini-strokes because we thought that lymph node we removed would stop that but obviously it hasn't. So now we're back to square one with that.
Personally I don't agree as far as the reaction goes but I'm so tired of going through doctors because it feels like they either don't know or don't care. Vin isn't happy with the diagnosis either but he's at a loss as well because it's all just so overwelming with all of my health problems. I feel so bad for him because he has to take care of his 33 year old wife. So not fair.
So what happened yesterday very well could be a in part a severe reaction to the Avelox that I was taking I suppose. To be honest, I'm still really out of it and don't remember much about yesterday. Today things are still foggy, I can't concentrate, and I feel like I'm going to black out but I'm suppose to quit taking the Avelox and if symptoms continue then contact my endo again and she will decide what to do. *sigh*
I really don't know what to do at this point. I have a number of the severe reaction effects from the Avelox AND I have all the signs of a stroke as well. My top lip is also swollen and has been all day. No clue why. I don't know what to do from here. My endo didn't even really seem like she wanted to hear about it you know? Even Vin was upset about that.
I'm sorry to scare all of you and I'm sorry I can't give a straight answer to you right now. It may be a severe reaction to a med or it may have been a stroke. I don't know but unless I can convince a doctor to have a CT Scan done all I can do is sit and wait for the next one. I am really out of it and just can't think clearly. I made Vin go to bed because he needs to work tonight and needs some sleep. He doesn't need to be sitting up worrying about me.
I think I'm going to clean out some email, tell the kids what to fix for dinner, get something to drink (I'm also dehydrated the doctor said), and just lay here feeling all funky. lol. Fuck I can't focus! I hate this so damn much.
Wednesday, June 18, 2008
Ummmm, Anybody Know About Strokes?
It's very likely that I had a stroke earlier today and this is now scaring the hell out of me. No, I'm not overreacting either.
I was sitting downstairs with Vin talking to him when all of a sudden I felt like I was going to throw up NOW. I ran upstairs, didn't throw up, and layed down on the bed. My body started feeling really heavy, I got a sudden horrid headache, I was seeing spots before my eyes, I felt like I needed to sleep NOW because my eyes were crossing, and I kept blacking out for a few seconds at a time along with slurring my speech real badly. Seriously, I would be sitting there I guess slurring at Vin (I thought I was talking okay) and then I would just fall over suddenly coming to once I hit the bed.
Vin didn't know what to think and we honestly didn't think at the time that it was something that bad to worry about. We thought maybe I was tired or just dizzy from being hot or something. If we had a brain in our heads we would have called 911 for an ambulance.
The reason I think I had a stroke is because it seemed like a heavier version of the mini-strokes I've had for the past year or so. I still have a bad headache, my vision is blurry, I feel "fuzzy", and it's hard to grab the words I want to use when I talk. I just feel so weird.
I have an appointment in the morning with my endo and I'm going to ask her about it and see what she says. It has me scared at this point and I don't want to mess with something like this. I'd go to the hospital tonight but I don't want to waste eight hours in the ER waiting just to be told that it's probably nothing. It would be very hard on me to leave the kids home alone for that long (Vin works graves and the 17yo is old enough to babysit). *sigh*
Anyway- has anyone had a mild stroke or know someone who has? I'm just wondering what it felt like and how long the side effects lasted. Either way I'm talking to the endo tomorrow to see what she says and if this happens again I promise that I am heading to the ER.
It's very likely that I had a stroke earlier today and this is now scaring the hell out of me. No, I'm not overreacting either.
I was sitting downstairs with Vin talking to him when all of a sudden I felt like I was going to throw up NOW. I ran upstairs, didn't throw up, and layed down on the bed. My body started feeling really heavy, I got a sudden horrid headache, I was seeing spots before my eyes, I felt like I needed to sleep NOW because my eyes were crossing, and I kept blacking out for a few seconds at a time along with slurring my speech real badly. Seriously, I would be sitting there I guess slurring at Vin (I thought I was talking okay) and then I would just fall over suddenly coming to once I hit the bed.
Vin didn't know what to think and we honestly didn't think at the time that it was something that bad to worry about. We thought maybe I was tired or just dizzy from being hot or something. If we had a brain in our heads we would have called 911 for an ambulance.
The reason I think I had a stroke is because it seemed like a heavier version of the mini-strokes I've had for the past year or so. I still have a bad headache, my vision is blurry, I feel "fuzzy", and it's hard to grab the words I want to use when I talk. I just feel so weird.
I have an appointment in the morning with my endo and I'm going to ask her about it and see what she says. It has me scared at this point and I don't want to mess with something like this. I'd go to the hospital tonight but I don't want to waste eight hours in the ER waiting just to be told that it's probably nothing. It would be very hard on me to leave the kids home alone for that long (Vin works graves and the 17yo is old enough to babysit). *sigh*
Anyway- has anyone had a mild stroke or know someone who has? I'm just wondering what it felt like and how long the side effects lasted. Either way I'm talking to the endo tomorrow to see what she says and if this happens again I promise that I am heading to the ER.
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