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!!!!

Now You See It, Now You Don't

What is it about me that makes tumors or "possible" tumors in my body want to play hide ~n~ seek with imaging equipment? Yesterday I got the results of my 6 month follow-up ultrasound on the lump in my right breast and now I don't know whether to feel relieved or like it's just same shit different spot. *sigh*

The results this time are that they couldn't find the lump anymore. So either it is gone (which would be fabulous news) or just hiding and will show up again in 6 months making this start all over again. If you remember the trouble I've had off and on through the years with a "now you see it now you don't" possible tumor, then you'll know why this is so frustrating for me. For right now though I am taking it as a good sign and enjoying the news. Now I can move on to bigger things in life right?

The infection in my neck has also returned after being given the okay by the surgeon. This lady pisses me off to no end. I told her nurse that the infection is back but I refuse to see that surgeon EVER again! I told her I would rather go sit in the E.R. for eight hours and have another surgeon lance it instead. The nurse asked again if I was okay and I told her that I want released from Dr. T's care...period! Thankfully the infection is nothing like it was last month and I actually have a normal sized neck.

At this point I will be having my endocrinologist refer me to Dr. Moley in St. Louis because I don't trust anyone around here. Let him look at my scans and my neck and decide how to treat me. I'm tired of being afraid of what is going to get screwed up next by some half-assed quack. I've heard alot of good things about Dr. Moley and I think I would finally feel like I was getting the care I need.

Big B will see his endo next week and we'll get the new results from his 24hr urine test. I'd love to hope that everything will be normal but the realist in me just hopes things haven't changed at this point. I don't want him having to join me in adrenal sufficiency ever if possible.

NOW I Have Reached The Limit...

and I really just can't do this anymore.

So anyone wanna know what all the swelling in my neck from my surgery on the 15th was from?A G-DAMN ABSESS!!! That's right, the entire left side of my neck is absessed and disgusting. I thought I had just done something wrong during the playdate I had with a friend but nope, it was my neck showing how badly infected it had gotten.

Last Friday I called my surgeon and said AGAIN that it was huge and that I felt something was wrong. AGAIN she made me feel like crap and guilt tripped me into not coming in. So at 3am on Saturday morning I wake up because I feel something on my neck. Turn on the bathroom light and there is blood and pus EVERYWHERE. It seems that my neck got so swollen it popped a stitch in my incision to let out the festering shit that was inside.

Since I don't have any feeling at all in that side of my neck due to nerve damage, I didn't feel anything other than the outward appearance and hardness I could touch with my hands. I can't imagine what this would have felt like if my neck wasn't all messed up!

I squeezed a whole lot of stuff out of the wound, put some triple antibiotic on it, and went in to Urgent Care. I found out I had an absess, they cleaned it out (they could stick a swab almost three inches into my neck), packed it with gauze, covered the entire left side of my neck with padding and tape, and put me on antibiotics & steroids.

So I spent part of Big B's birthday in Urgent Care, had to go back to have it repacked on Sunday, had to go in again today for the same, have to go back again tomorrow....and who knows how long this will go on.

The best part? The fucking surgeon's office won't squeeze me in even though I told them how badly they have messed up!!! That's okay, I've documented every single part of this and I'm having someone's ass for this!!!

I just don't get why I keep getting crappy medical care. I'm really not a hard patient to deal with. I TRY to find good doctors. What am I doing so wrong here? I feel so beaten down and keep crying at the drop of the hat for the first time since all of this began with pity. The "Why Me?" crap is real heavy here right now but I think that's because the shitty care just seem to keep coming and coming and coming like I'm SUPPOSE to be broken by it. *sigh* I hate doctors! HATE THEM!!!

Dammit. Just Dammit.

Yesterday I had my surgery to remove the lymph node that has been pressing on my carotid artery. Everything went fine and I busted out of the recovery room as fast as I could (I hate laying in those beds when I know I can be home).

I came home and the pain started. No biggie I'm use to pain. Okay so it hurts to move my head. Okay so the incision is lower down than I expected which means people are going to stare at me again. Okay so now I have no feeling at all around my left jaw. Great more nerve damage. Oh well, I can handle these.

Take some stuff for pain and to knock me out for a few hours last night....

And wake up this morning with the left side of my neck swollen and HUGE plus an awful headache. I can hear fluid squishing around in there when I touch it and I have a feeling this means I'm headed back to the hospital in a little while. I don't want to go back to the hospital! This is such crap. Why does something have to fuck up with every single damn surgery?!

*sigh* So yes, this is Jo being a whiny little bitch. I'm not posting to get attention just posting because everyone else is still asleep and I'm crying pissed off tears. Plus, I don't have long distance so I can just call my best friend and cry to her. Don't you feel lucky folks? LOL

Bugger. Bugger Bugger Bugger.

Do You Find This Creepy?

*this is not a paid post or advertising post but a real question from me personally.*

I've been thinking about this lately and thought I would see what other people's thoughts were on this. I have already started making arrangements for when I die. Hopefully that won't come for a long time but I hit a point last year where I decided I didn't want my family to have to deal with figuring everything out while they are grieving.

So last week I let the kids pick out the Memorial Urns that some of my ashes will be put in for each of them. I even saved up money for several months to buy fairly nice ones so around here talking about it has been like talking about the weather...

Me: "What do you think of this one Bret?"
Bret: "Too girlie. What about that one?"
Me: "Oh I like that. Do you guys want that one?"

Seriously, it's how we discuss it. Here is the one we chose; Mother's Touch Urn

Next I will be buying the cremation jewelry for each of them and a keepsake urn for Vin as well. Do you find this creepy and weird or smart? I feel deep down that this cancer is going to end up in my bones and I want to be ready for it. I want all this out of the way so we can enjoy the time we will have left at that point.

Some people think it is morbid and that it's not good for the kids. I think it's good for them to know it's a reality, it will happen someday, and then toss it to the side. We don't dwell on it (because again, I could live another 20 years if this cancer behaves) but accept it and to be honest, it has been very freeing for all of us. The kids even know what I want done with my remains, where my will is, and who is getting what material-wise.

How do you feel about this? Is this what you would do with your family or do you think there is a better way? I'm honestly asking and welcome all opinions even if you think I'm a sick freak.

Thanks.

Update on Breast Lump and Node in Neck

I felt so kinky on Monday, I got felt up by a chic while two guys watched. GO ME!!!!

Okay so what really happened is the breast surgeon examined me at my appointment and I could have given a shit less that two med students watched. LMFAO.

The word on the lump in my right breast is that it does NOT look to be a form of breast cancer and is most likely metastatic medullary cancer. We are going to do another scan in three months and go from there on it. Of course, if it IS metastatic MTC then I am the only person this surgeon has known that has had it spread there. I'm going to have to check with my MTC group and see if anyone else has had it though because the folks on the group would know.

As for the the lymph node in my neck, I will be having surgery to have it removed on April 15th. It will be easy compared to my last cancer surgery on my neck so I'm happy.

I'm not going to St Louis at this point because the doctor felt (she's a thyroid & breast surgeon) we would cause more damage than good if we went after the other 12 (?) cancerous lymph nodes in my neck. I already have a ton of scar tissue AND we already know the medullary cancer has spread to my armpits and lungs sooooooooooo no hurry taking out a bunch of little lumps. Same thing goes for the spots in my lungs. It just all stays for now and once they start growing then we'll turn to surgery and maintenance meds.

So all in all a good day. I get to keep what little bitty boobies I got and I finally get this damn thing out of my neck that has been pressing on my carotid artery and causing the mini strokes. I'm a happy camper!

Other than that it has been a pretty quiet week. I wanted to post sooner but I haven't felt too well lately. Nothing big just migraines and little irritating things. I'm going to try to write up a few posts for this and my other blogs within the next few days though so I can start getting into the swing of things again. I miss blogging and miss reading everyone's blogs as well.

Have a great weekend everyone and take care.

As always, things here are never boring.

Since my last post Monkeyboy got a bug bite on his bottom lip and we have had a wonderful run in with MRSA, the results came back on Big B's 24hr urine showing that adrenal tumors are most likely beginning, and just all kinds of fun. haha

This was our first time dealing with MRSA so it was a little scary especially since no one bothered to tell us (doctor and then urgent care who had taken a culture) what the infection was until it was pretty much too late for the rest of us. Considering that I don't like the idea of ANY of my kids being sick plus I have a weakened immune system.... well that didn't sit too well with me AT ALL. Saying I was beyond pissed would be an understatement. Thankfully though no one else got the infection and Monkeyboy is doing much much better. To be honest, I didn't know a whole lot about staph infections before this month but boy do I now! Nasty stuff and I recommend everyone to read up on it because you just never know when it could show up.

As for Big B, we had elevated levels in his test results and had to see another endocrinologist (because his ped endo felt he was old enough to go to an adult endo) to decide what to do next. I felt really comfortable with this endo considering that he is MY endo's husband! After going over the results and talking to Mr Dr Endo the plan is to test Big B every three months to see how the results flucuate/rise. If it looks like things are going slowly then we will wait it out for a bit (because pheochromocytomas usually grow fairly slowly) but if it looks like tumors are forming quickly then the search for a topnotch adrenal surgeon will begin. There is no way in hell I'm letting any of my kids end up all messed up like I am. I love them too much.

So please keep my kiddo in your thoughts for awhile. I'd really rather things not come to him needing surgery. I think they've dealt with enough of this MEN2a bullshit already.

I am happy to report that I did not almost die this month. Amazing I know!! *smiling* Actually, now that I know what to do I see adrenal crisis being a very rare thing for me and I'm very happy about that. Now all I just need to make it through the upcoming appointment with the thyroid/breast surgeon on March 31st and things will be all good. To be honest, I'm scared about that one but really really hoping the lump in my breast is nothing and we can go back to life as usual.

Life And Almost Death

I figured that title covered both things I am posting about today. LOL. First, the story about what a shitty month February was...

As I said in my last post before I "disappeared", I felt like hell so on February 6th I went to see my PCP and find out what was going on with me. On the way to his office I started getting extremely horrid nausea and feeling like I was going to black out. Once we got to the office I informed them of what was happening and they still had me sit in the waiting room for 45 minutes. Finally I asked the nurse if I could please go to a room before I passed out.

Once in the room my doctor came in fairly quickly. He diagnosed me with a sinus infection and bronchitis. When I asked him about the feeling like I'm going to blackout and nausea he just said it was probably from the sinus infection. Ummmm okay. Personally I was worried about it being the start of an adrenal crisis. Anyway- got meds for the infection and bronchitis, went home, and proceeded to go downhill from there.

By February 9th I was sicker than I have honestly been in my entire life. It was the worst nausea I could ever imagine and it was a real fight to stay conscious. Finally I told Hubby that I needed to go to the ER because I believed I was in adrenal crisis. Before leaving, I decided to use my injection kit in hopes that it would help ease the nausea some (this part is important later).

So we went to the ER, spent over two hours in the waiting room even though they were told it's a medical emergency, and once we went back were there for another six hours. *sigh* I ended up taking through an IV- two different nausea meds, two doses of steroids, and three bags of IV fluids because I was so horribly dehydrated. Once that was in me I felt MUCH better and continued to get better once we were home.

I honestly thought the whole thing was no big deal but when I told my endocrinologist about it on February 22nd (that was the first appointment I could get as she's been out of state for a family emergency), she informed me that had I not given myself an injection before leaving I would have died on the way to the ER. That scared the hell out of me!! She then proceeded to explain adrenal crisis in depth to me which is something that wasn't done before and told me exactly what to do when I get sick again. I also found out that doubling my steroid dose when sick was pretty much worthless because I take 5mg a day of Cortef so the most I took while sick was 20mg. Ummmm, I guess when you get sick the LEAST you should take is 40mg in the morning and 20mg in the afternoon. Whoops.

My endocrinologist is sending me to a thyroid/breast surgeon on March 31st because she says that even though the biopsy results on the lymph node in my neck came back benign, it wouldn't have shown up on the Octreotide scan if there weren't cancerous cells in there so she wants it taken out. If this surgeon can do it then we'll have it done here in New Mexico but if she isn't comfortable then I'll be sent to St. Louis for surgery.

My endo wanted me to see this surgeon also because she is a thyroid AND breast surgeon which leads to my second bit of news. My doctor is worried about the lump in my right breast and her opinion is that it needs to be removed and then biopsied because as far as she's concerned it's gotta go whether its benign or malignant. Of course, we will go by whatever the surgeon feels is best in this case and personally I don't care what they do with it as long as I hear the word "benign".

I seriously think learning I have breast cancer would be the breaking point for me. I can take alot of shit but being told yet again that I have another form of cancer would be too much.

For now though I'm just enjoying life whenever I can. I let Big B get his ear pierced for the first time two weeks ago and last week I let Sis get two new holes (three total) in her right ear. I think at this point Hubby is worried that I'm going to bring the 5 year old home with a piercing. Haha

Being Sick Sucks!!!

Considering how lame that post title is that should tell you just how sick I am. LOL. What started out as a simple cold over two weeks ago has now turned into a barking cough that Hubby swears is pertussis, a sinus infection over my right eye, a throat that feels like I've spent the last week eating shards of glass, and a feeling in my chest like I've been punched repeatedly by the Incredible Hulk. Sounds lovely doesn't it? Dammit.

Big B and Hubby caught the cold and then got over it, Sis was the one lucky family member who didn't get it at all, and MonkeyBoy still has it holding on to him a little bit as well. I feel worse for him than I do for myself because he's such an active little bug that being sick is driving him bananas!

I'm afraid this post won't be very long or very exciting either and I apologize. I just wanted to make sure I posted something so that the few people who are left reading this blog will actually still read. *laughing* We all know how flaky I can be when it comes to posting but this time you can at least know that it's only because I'm a sickly gal. *wink*

So I'm afraid that is it for tonight and I will try to post something exciting tomorrow if the Hubby and heathens allow me online. I keep getting yelled at to go back to bed and I'm not a stay in bed all day kinda gal so I'm about to go postal on all of them.

In good news, my adorable friend Katie will be here in one week from England! YAY!! She will be here for a little over a month and I can't wait to spend time with her. Most importantly though I hope that the treatment she receives here in the states will ease her pain and give her the life she is use to back.