Apologies

    I’m sorry I let this blog basically die. Cancer DEFINITELY has been the “easy” part over the years. My cancer is still growing but it is going very slow. I don’t know how I got so lucky. The rest of my body though is being an asshole plain and simple!

My diagnosis‘ as they stand now are- Metastatic Medullary Thyroid Cancer, Adrenal Insufficiency (lost both adrenals to pheos), Hypothyroidism (no thyroid), Peripheral Neuropathy, Degenerative Disc Disease, Hypermobility Ehlers Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, Dyshidrotic Eczema, Migraines, PTSD, Adult ADHD, and a bunch of small stuff. Lol. Its alot and it makes life hard at times. I go for genetic testing soon to figure some things out.

The kids are doing good. My oldest has Pheos growing but they are slow and we are watching them and waiting. Thankfully they aren’t affecting his blood pressure or anything right now. He had something go on with his heart awhile ago so we are still seeking answers to that. My daughter is symptom free and hopefully beyond being a thyroid cancer survivor I hope she’s done with all of this.

My oldest son and his wife had a baby in 2017. She is thankfully MEN2a NEGATIVE. The best news an Amma could get.

 

Anyway- we are here and I’m sorry I’ve been lax.

Just Keep Swimming...

So obviously I still suck at this but I'm trying. Life seems to keep running full steam ahead and I'm forever trying to catch up.

In January I finally had my first appointment with an Oncologist, Dr F. I have felt from the beginning of all this that I should have had an Oncologist even if they couldn't do anything for the cancer or it wasn't at a point where more surgery was needed. A doctor I had previously didn't think I needed one but my new Endocrinologist said it's something she considers mandatory for all her patients with MTC. I have to admit, I feel better having an Onc even if it's just for a once a year checkup visit. You never know when things might go south and I'd rather not have to worry about finding someone during that time.

Anyway- love the Oncologist and I have a full team now of nothing but female doctors which makes me very happy. As I've previously posted, I have not had good luck with male doctors in the past (except the PA who originally found my cancer, of course) as one was a complete asshole piece of shit (the first rheumatologist) and another almost killed me. I like and feel comfortable with all my doctors making one less stressor in my life.

So findings at the Oncologist were that my calcitonin levels have risen again. Not a lot but it's definitely back on the rise. I also found out that the "tumors" I was told I had in my lungs several years ago are NOT tumors but scar tissue from my old bouts with bronchitis and pneumonia as well as from my asthma issues. So that is a HUGE weight off my shoulders. I also don't have cancer in my neck which is also good but we have no clue where the cancer is exactly and that is bad. I think I would rather know where it is than not because then my thoughts instantly go to the bones and I stress myself. We're watching and waiting at this point so just appointments every six months, testing, and following up.

My Neurologist also sent me to see a Cardiologist and had tests run because my dizziness has been getting quite a bit worse over the last year. I'm happy to say that tests showed my heart is nice and healthy so no worries there. They also helped us pin down what IS wrong and that I've had what's called Postural Orthorstatic Tachycardia Syndrome aka POTS for several years. So many of my symptoms over the years now make sense and while having yet another diagnosis sucks, I'm glad to now know so I'm can learn about it and be able to better battle it.

Remembering This Blog's Purpose

I know I haven't posted in forever and I'm sorry. My brain kept telling me that there was no reason to post since things never really get better but recently I was reminded why I started this blog. I started it because when I Googled "MEN2a" in hopes of finding someone who could help me understand all this, I came up empty. There were no blogs for people like us and that leaves you feeling pretty lonely. Right then I decided that no one else would ever have to feel that way because I would be here.

Sadly there still aren't any MEN2a blogs that I could find and its been 10 years. Earlier this month though I was shown once again why me doing this is important. Everytime I get an email from one of you I realize all over again that this is important. So thank you KELLY for being the one to remind me this time.

I will do better in the future and I am here for all of you with MEN2a, medullary thyroid cancer, Pheochromocytomas, neuropathy, and all the other crap, crud, and junk that comes with this. I will help you through this as best as I can.

You are not alone

I'm A Neuropathic Nightmare!!

I saw the Neurologist and found out after many tests, scans, and pokey needle things that I definitely have Peripheral Neuropathy which we already knew but now I have an updated diagnosis of it for my records. What I wasn't expecting was that when I brought the papers home and looked at them I saw that the doctor had written down, "Small Fiber Neuropathy", "Idiopathic Neuropathy" (which just means no clue what caused it), and "Autonomic Neuropathy".

The thing that bothers me is the Autonomic Neuropathy because it's one that affects your organs and explains why I've been getting dizzy a lot. It seems it is affecting my heart although only very mildly at this point. We aren't sure yet what other organs are being compromised yet and I can't say I'm in a hurry to find out.

I also found out that I have to have an MRI and I'm being referred to a pain clinic because she honestly thinks that at this point I'm going to need pain meds. Not what I wanted to hear but also what I already knew too. I've tried all the medications to try to help with this neuropathy and I've either had bad reactions or there is my Gabapentin which keeps me sane and not wanting to gnaw my limbs off but doesn't actually help pain. I absolutely hate pain medications and will have to mentally become okay with taking them so we will see.

Big B and Sis are doing alright and plugging along in this shithole we call life. All I can hope is that they are smarter than I was at that age and make the most of their lives. I want the best of everything for them and it's hard once your children become adults because you can't give them that or do it for them. As adults they have to go get it for themselves. Can't help wanting to care for my "babies" no matter how big they get though. Lol.

The "Legacy" Continues...

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

To Everyone Who Has Contacted Me...

And not received an answer, I just want to tell you that I am NOT ignoring you at all. I have recently found several emails that were missed in the high volume of mail that my tjcoiner and JoBurzycki accounts receive and I am so very sorry for that. I've also just found out that I should be hitting "Other" when checking messages on Facebook as well because I found several in that folder today. Again, I am sorry.

I want you all to know I appreciate you reaching out to me and sharing your stories. They ARE important to me and know that as I read through the mail I am thinking of you, sending healing thoughts, and looking forward to getting back to you. I'm ashamed to say I even found one email from 2010 in the mess.

So please know. I AM listening and I DO care. Obviously Yahoo and Facebook doesn't though. Lol.
Hugz,
Jo

Goodbye and Love to Susan/WhyMommy

It is as always with sadness that I tell you we have lost yet another amazing woman to her fight with cancer. Susan aka WhyMommy of Toddler Planet fame lost her battle with IBC (Inflammatory Breast Cancer) on February 6th, 2012.

Susan was and will always be an inspiration to so very many women. Not only did she fight her own battle (through multiple recurrences) but she was also an advocate for woman, a scientist, a renowned blogger, and just all around amazing person. My own experience with her showed her to be helpful, kind, patient, and caring. I feel honored to have known her even the little that I did.

My heart and thoughts go out to her family. Nothing can take away the pain of your loss but know that Susan will be remembered by so very many as the wonderful person she was.

I would like to end with her mantra that is posted on her own blog

"All that survives after our death are publications and people. So look carefully after the words you write, the thoughts and publications you create, and how you love others.  For these are the only things that will remain." ~Susan Niebur

Dear Body,

I hate you too but I at least TRY to be nice to you so quit being such a painfilled bitch! I don't know if I can ever understand why you felt the need to just quit on so many levels. Yes, we have cancer that can't be cured. Yes, we're missing a bunch of organs. Yes, we're stuck on steroids for the rest of our life and have to worry about sickness. Yes, we have fibromyalgia as well as RLS, Costochondritis, Peripheral Neuropathy, Osteoarthritis, Bursitis, Migraines, and who the hell knows what else. Yes, our life will never be "normal" again. That part hurts and upsets me too. Honestly it does.

But you know what? We're still here. We're still alive to see these kids grow. We're still able to cheer friends on and cry with them when needed. Our eyes work so we can see all the beauty in the world. Our heart works so we can love and appreciate love in return. Our mind may not work as well as we'd like but it remembers our loved ones and our time with them.

We have so much going for us and chronic pain is not the thing hurting me the most right now. It's knowing that you aren't trying to fight anymore. We can't beat this but we can still give it hell. We can still let all these stupid "issues" (we do have enough for a subscription of our own don't we? lol) know that WE aren't quitting or giving up.

I know it's hard. I'm the one inside you crying out most days. I feel your pain and know it's hard but please don't forget that I'm in here too and I want to live. It might not be the life we planned on or wanted but let's still LIVE while we can. I don't want the world to pass us by or leave us behind. I want to be as much a part of it as you can handle. I promise I won't be sad if you do your best.

Just don't give up. Don't quit trying.

Sincerely, The Soul Trapped In You.

Goodbye And Love To Sarah of Spruce Hill Farm

It is with much sadness that I tell you we have lost another wonderful, beautiful, cancer mama. Sarah from the Spruce Hill blog's family posted this on Twitter just minutes ago- "Friends: Sarah passed quietly tonight after a long, hard battle. We appreciate all love/support/prayers. Thank you [from her family]". 

I want to send my thoughts, love, and condolences to Sarah's family. She was an inspiration to many many others with cancer and will be sorely missed.

I really hate cancer! Dammit!

"Average Joe" heroes

"Average Joe" heroes

 As a little girl, my heroes were Wonder Woman and my cool third-grade teacher with the wild hair. Later, they changed to people like Amelia Earhart, Joan of Arc, and Eleanore Roosevelt. Okay so I still thought Wonder Woman was da bomb too! When I became an adult though, I quit having heroes. There just wasn't anyone who inspired me anymore.

Then I read the story of Kent and Melony on a parenting board I was on at the time. Melony was the mother of fivc (three by birth and two adopted), a talented artist, and she designed the most adorable outfits for kids. From a distance this woman seemed to live a perfectly charmed life. She just seemed so happy and on top of the world. Soon though I found out how truly amazing her story and life really were.

You see, Kent was fighting a Stage 4 cancer and it had been a pretty rough fight for him. Each update told of a body that was getting weaker yet a soul that was still burning brightly and fighting for all it was worth. Neither of them ever complained about anything and Melony spoke of Kent with  so much love that you could actually feel it yourself. Kent showed his love by fighting and refusing to leave his family. All this and more is why they will eternally be my heroes.

Kent taught me that I can never give up because the bottom line is that it's not really about me. It's about my family and loved ones who still need me. I learned to always keep my sense of humor thanks to him. I know now that if he could laugh, smile, and joke with all he was up against then there's no reason I couldn't do the same.

Through Melony, I finally witnessed unconditional love, unwavering faith, and the very epitome of grace. She is the kind of woman I dream of one day being. She never spoke of how hard this must all be on her but instead told about every wonderful and encouraging thing Kent did. 

Thanks to Kent and his amazing sidekick, Melony, I have heroes once again. Even though they don't wear masks, tights, or long flowing capes, my "Average Joe" heroes still save the day. And the greatest part of all is that all they had to do was keep being themselves.

*Footnote* Kent passed away at home holding his wife's hand on September 23, 2005. He is sorely missed and will always be "Superman" to myself and many others.

Goodbye and Love to Rivka of Coffee and Chemo.

I am ashamed to say that I just found out today that the world lost a wonderful beautiful soul in Rivka bat Teirtzel from Coffee and Chemo on October 29th after a long battle with her breast cancer.

Rivka always made sure to be not only a mother and wife but also a friend, a voice for moms with cancer, and a shining example of how to fight cancer gracefully.


Rivka, you will be sorely missed and I thank you for reaching out to me during a time that I really needed it. Your example made me reach out to help others as well and I am so thankful for that. I am proud to have known you and will try to carry on your example in my own life.


Light and Love Sweet Friend.

Goodbye Daddy

At 1am this morning my wonderful father, Darling Vincent Smith passed away due to complications from his metastatic medullary thyroid cancer. I miss him already but I am so glad I had him in my life even if for a short time.

Love you and miss you, Dad. Thank you for being a part of mine and your grandchildrens' lives. We will always remember you.

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.*

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.

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? 

Wow Has It Been A Year?

I can't believe it's been a year since I wrote a post about us on here. It's funny that this post is to share the results of Big B's latest 24 hour urine with everyone because that's what my last one was about.

The results from this time last year were actually slightly elevated which meant it was likely pheochromocytomas were forming but it wasn't something to worry about yet. I don't know why I posted that it was normal and I apologize for that.

His most recent results (which are from last week) show that he has NOT gone up at all and while everything is still slightly elevated it isn't any higher than this time last year so that is very good news! It means that we are still in watch and see mode but not having to hurry towards surgery anytime soon.

We'll continue to repeat the results every six months and keep an eye on things so we're not caught off guard like we were when I was diagnosed.

More good news is that he is still not even showing a trace of calcitonin so he is at FOUR years of being considered cured of medullary thyroid cancer and I for one couldn't be happier. I hate knowing that Big B and Sis have to deal with this at all but I'm so happy we caught it so early with them and their life will be so much better than mine. As a mom I can't ask for more than that.

Hugz and I will try to post more often.

Cancer Claims Another Wonderful Woman

Yes, I know I haven't written in many months and you have no clue how many times I have started a post only to delete it because my heart just wasn't in it. Blogging just honestly hasn't ranked very high on the priority list lately I guess and for that I apologize to those of you who read here.

Tonight though I read something that broke my heart and I knew that I couldn't just ignore it and not post.

Those of you who have followed my blog have read my posts having to do with Lisa from Clusterfook. The woman is amazing as she has been through cancer three times now. Her strength and outlook through it all taught me alot about how to handle living with cancer with grace and an immense amount of class.

Unfortunately I have just read that she is now in the final days of her battle and it breaks my heart. She was realistic from the beginning about her chances of making it through this time but I'll be honest and say I really hoped she would beat the odds and come out okay. She deserved a break this time, you know?

So my point of making my first post back blogging about Lisa is so that anyone who reads will add her and her family (she is leaving behind a husband and two young daughters) to your thoughts, prayers, loving vibes, or whatever you do as she is very deserving of them. From what I've read, she has fought as hard as she could and dealt with the pain long enough. Please hope she is finally able to be at peace as much as it breaks my heart to ask for her passing.

Lisa- I know you will never read this but thank you for sharing your life with us online and for the emails that helped me become better about living with my own cancer. Thank you for being so amazing, graceful, classy, and honest no matter what. I hope I can one day be even have the woman you are. You've set the bar very high sweetheart.

Go in peace, dear.

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.

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.

YAY, AWESOME News!!!!

FINALLY I have some really great news to share with all of you. First I want to thank you though for always keeping the kiddos and I in your thoughts and prayers.

Today was Big B's follow-up appointment with his endocrinologist. Three months ago the results from his 24hr urine test (that measures catecholamines, metanephrines and VMA) suggested that he was developing pheochromocytomas aka the adrenal tumors that are part of MEN2a. The doctor said we would test again in three months and see how quickly things were changing.

Today we received the results of his most recent test and I am so incredibly happy to tell you that this test came back CLEAN!! As of right now he is NOT showing signs of pheos and we can breathe a sigh of relief for awhile.

Things could of course change with the next test in six months but for now we are just happy to not have to be discussing when to have surgery on him. Again, thank you for always looking out for us. I am so over the moon happy with this news and Big B can look forward to another year of beating the odds.

YAY!!!! YAY!!! YAYYYYYYYYY!!!!