Cancer Is The "Easy" Part...

2011-07-12T10:32:00.003-06:00

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

2011-05-11T21:40:00.000-06:00

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,

2011-05-05T18:34:00.003-06:00

"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

2010-10-30T17:46:00.005-06:00

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

2010-09-25T22:53:00.000-06:00

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.

2009-10-17T19:10:00.006-06:00

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

2009-10-07T22:56:00.015-06:00

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

2009-08-21T21:14:00.001-06:00

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

2009-06-30T13:46:00.002-06:00

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

2009-02-27T21:24:00.002-07:00

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

2008-06-19T14:43:00.000-06:00

I have spentthe 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

2008-06-18T13:31:00.000-06:00

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

2008-06-17T15:27:00.000-06:00

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

2008-06-10T17:18:00.005-06:00

Now You See It, Now You Don'tWhat 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

2008-04-28T19:48:00.002-06:00

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

2008-04-16T19:44:00.003-06:00

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

2008-04-07T14:58:00.001-06:00

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

2008-04-04T16:38:00.001-06:00

Update on Breast Lump and Node in NeckI 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

2008-03-25T16:26:00.000-06:00

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. hahaThis was our first time dealing with MRSA so it was a little scary especially since no one bothered to tell us (doctor

2008-03-05T13:59:00.002-07:00

Life And Almost DeathI 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

2008-02-04T15:55:00.000-07:00

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

2007-12-29T20:05:00.000-07:00

2007 Is Ending With A Bang!I know it has been awhile since I've posted to any of my blogs and I'm sorry. I know it lost me alot of readers but that just can't be helped right now. Before Christmas I received the results of my recent CT scans and ultrasound. As I said before, the purpose of the scans was because an Octreotide scan I had showed uptake in my neck along with questionable spots in my

2007-11-25T11:45:00.000-07:00

No Hump No Hump Just Ugly Little LumpsThey are soooooooo not lovely either!! Well I got my Octreotide Scans results back today and it wasn't what I was expecting.The cancer is definately back on the left side of my neck and coming back in the right side also known as there was definate uptake on the left and mild on the right. I expected that though and knew someday it would come back. I really

2007-10-24T19:39:00.000-06:00

Long Time No PostI have so much to post about I just don't have the energy to do it. I'm sorry.Let's see what is new since last time...-I've had several ministrokes.-I've had memory loss and problems "finding" my words since the ministrokes and a possible mild stroke.-I won my Social Security Disability hearing which is bittersweet.- I have a swollen/inflamed/enlarged lymph node on the right side

2007-08-20T22:47:00.001-06:00

August 20, 2007I finally received the results of my ultrasound from the doctor's office yesterday and supposedly it showed nothing. That's right, a big fat NOTHING. Meanwhile, the pain has gotten even worse, the painkillers aren't touching it, I'm constantly nauseous, and I'm running a low grade fever nonstop. :(Bright and early tomorrow morning I have an appointment with my doctor and then I

2007-07-31T15:54:00.000-06:00

Lyme Disease and Pediatric Medullary Thyroid CancerI received two emails recently and wanted to pass on the information from them in hopes that it will help someone else out there.Michelle from the Online Lyme Disease Support Group asked if I could share their link which I'm more than happy to- mdjunction.com/lyme-disease. Michelle says "MDJunction is a health community focused on becoming a free

2007-06-24T22:49:00.000-06:00

New Endocrinologist- AgainI did see the new endocrinologist in May and she seems much better than the one I saw when we first moved here. She even has another MEN2a patient! It was exciting to hear (in that morbid sort of way) that the kids and I aren't the only MENnies in this area.She had me do a blood draw for calcitonin, TSH, intact PTH, Vitamin D, B-12, calcium, and something else I can't

2007-06-12T22:13:00.000-06:00

Insurance Companies Suck TooI filed a formal complaint with our insurance company (Lovelace Health) on Dr. Jerk Rheumatologist in hopes that they would actually look into it. Of course, I was wrong. All they did was have one of their people go to Dr. Jerk, ask him if he "fired" me, he told them "no", and that was it. They believed him and basically told me too get bent. :(He of course didn't

2007-06-10T22:12:00.000-06:00

Okay, Scratch ThatI was in love with the blog title "Life's A Faught" until the teenager came up to me, read it, and then turned to me and said "Mom, you DO know that it sounds like someone saying Life's A Fart in a New England accent right?"And ever since all I can think is "life's a faught...life's a fart". UGH.So I'm just going to go with what I had planned on calling it which is Cancer Is The

2007-05-20T18:09:00.000-06:00

Please Keep Her In Your Thoughts *Update- She's gone. Patsy passed away around 9:30 eastern time this evening, Sunday. Her breathing slowed and she was gone within a few minutes. She was wrapped in love, to be sure.A very special mama from a few of the parenting boards I use to frequent might be losing her fight with lung cancer tonight- Patsy.She has always been a bright light on the mama boards

2007-04-22T13:50:00.000-06:00

Perfect Example Of Jerky Doctor!*I took out some of the curse words now that I'm not so upset*Well it seems I will be looking for a new rheumatologist and my original feelings about Dr. O were correct.... he is a jerk! I was unable to see him for about six months due to how tight finances have been around here. I made an appointment with him for April 16th so I could catch him up on things and

2007-04-02T22:15:00.000-06:00

Thank You Planet Cancer!While websurfing tonight I came across this awesome list that fits me so perfectly. Now I have new things to say when asked about my U-shaped scar on my neck! :)Top 10 Responses To Nosy Questions About Scars 1. Never go to Mother's Tattoo Parlor when you're high.2. You think that's bad, you should see the exit wound.3. I self-mutilate. Don't you?4. Those damn flesh-eating

2007-03-30T12:31:00.000-06:00

What IS Men2a? Medullary Cancer? Pheochromocytomas? Hyperparathyroidism?*I previously posted this in December 2004 but with all the people who still visit this site on their search for MEN2a, I felt it was important to post again WITH corrections because we all know I've learned alot more about this in two years. ) As always, thank you for reading and please remember that I have had two surgeries

2007-03-22T18:11:00.000-06:00

So Much For ThatI guess the correct way to give the CT Scan results is kinda of inconclusive? I need to get a copy of the radiologist's report and read it myself before I can figure out what's what. Right now there's just too many questions left unanswered. Sorry but hopefully things will get worked out and I can come back here and give a good report.Other than that, I'm back on Ultracet for pain

2007-03-06T20:54:00.000-07:00

Just A Quick Updateaka So I Don't Forget! :) I finally have a date for my CT Scan! I'm happy that I can finally get it done but at the same time, having a reaction to the barium shakes makes me want to hide under my bed and not go. lol.The scan will be done on March 12th and I'm hoping to get the chest x-ray earlier that same day so everything can just be done and over with. We'll be doing a scan

2007-02-23T17:26:00.000-07:00

Long Time No "See"...*updated on 02/23/07*Again, sorry I don't update much. I probably should since there are so many Google searches that bring people to this blog. Of course, they realize quickly that it's not a medical page and exit sooooooooo...lol. I'm afraid after the initial overdose of MEN2a info when you are first diagnosed, there isn't a whole lot to talk about after that. It's a

2006-10-19T08:44:00.000-06:00

Pain Sucks!This will be VERY long since I've been unable to post the last few months. I'm sorry I haven't been updating but the pain has cut back on alot of things I can do. You see, on top of the MEN2a, medullary cancer, and adrenal insufficiency (which are irritating and make me tired but really don't actually hurt) I have fibromyalgia, chronic myofascial pain, and peripheral neuropathy (which

2006-08-23T14:43:00.000-06:00

My New Hero and Update On UsI came across a blog today that truly set me back on my heels. It was a blog I needed to see because I've been sitting here feeling sorry for myself lately. Then I found Ruben. Ruben's blog Each Day Counts is an amazing display of an amazing man and his life. He is my new hero and I am so glad I found his blog. Please be sure to visit and encourage him as he fights for

2006-08-17T10:29:00.000-06:00

The Power Of Comments*This is a cross post from my Life With Heathens blog but I wanted to share it here as well. Some words and links have been changed around so it makes sense here.*I've received some very humbling comments in the last few days on both this blog and our LWH blog. Usually comments are just short witty phrases to let you know a person was there. I've always thought comments were

2006-07-30T12:21:00.000-06:00

Just Keep Swimming, Just Keep Swimming...This is how I'm feeling right now. I'm swiming for all I'm worth right now but a floatation device would be a nice surprise. ;) Where do I start the updates?Saw the rheumatologist again and all he really did was up the Elavil some more, tell me not to dwell on the pain or it will hurt worse (the response to me saying that if we can just ease the pain I can

2006-06-24T16:09:00.000-06:00

And The Wheels Go Round And Round....What do I have for you this month? Why more medications and more diagnosis of course. Fun times. Good stuff. Oh who am I kidding? lolI took Sis to see Dr M yesterday because she's been complaining of pain in her jaw when she eats, yawns, and so on. So of course since she is MY daughter it can't just be some lil ole thing. No no no it has to be something odd

2006-05-26T00:53:00.000-06:00

I hate this blog...I really do. I hate coming here to post and I hate reading over the old posts. There's never much good news to talk about and it reminds me of the bad news. I know what you're saying (if anyone even reads this thing at all anymore), you're saying "Well then quit blogging here" and I thought about that. If I quit writing or took the blog down though then I would have failed at

2006-03-22T10:22:00.000-07:00

Well I can now add one more cancer to the list of ones I don't have. I do not have cervical cancer which honestly surprised me. At this point I just figure I have whatever they are testing for until I get the actual results. lol. No surprises that way and if the results come back good then I have a reason to celebrate! :)The kids had their first appointment with the pediatric endocrinologist

2006-02-27T12:48:00.000-07:00

No Doctor's MonthFebruary was my no doctors month. I'm tired of it all. I wanted one month to feel semi-normal again so I refused to see anyone for this entire month. Good part was not having to go to appointments constantly but the bad part was I spent a month in pain and sick.The pain in my limbs is now pain everywhere but especially in my hands/arms, feet/legs, hips, upper back, and shoulders.

2006-01-31T00:41:00.000-07:00

Blah blah blah...Sorry, I haven't felt much like updating lately. Everytime I get ready to I remember that I hate all this crap and close the window. It's also very hard for me these days to post without breaking into a string of curse words no matter how hard I try to keep this blog nicey nice.Let's see- my CT scan results are still up in the air. The endo here says that their two scans reveal

2005-12-19T16:28:00.000-07:00

Just Updating/LoggingNothing great or exciting happening. The insurance company ok'd the arm splints for my carpal tunnel but haven't heard anything about the kids seeing a decent doctor yet. I forgot all about calling to schedule my physical therapy until I found the card today so I guess I still need to do that.Retook my CT Scan and thankfully they used some kind of gastric contrast stuff (

2005-12-09T17:44:00.000-07:00

Check Please!!I'm so tired of bloodwork, scans, tests, pain, and just crap in general. It's beyond old at this point. Anyway- on to the medical stuff that I know everyone reads for.....My 24 hour urine test (the one that tests for pheos) came back a little odd. Everything on it but the metanephrines were on the high end of normal and the norepinephrines were elevated at 524 (normal HIGH end is

2005-11-23T13:05:00.000-07:00

Odd Bloodwork Results and Vomiting KiddoWell yesterday the endocrinologist called me with some peculiar results. My intact PTH came back "fine" he said. He said that it was nowhere near 1097. He also said that my calcium was actually low, calcitonin seemed about the same, and that the labs Valdosta used must have been wrong. Well to be honest, I would think since the levels were 515 in July and

2005-11-19T13:04:00.000-07:00

New General Doctor Set UpOn Friday the oldest two kids and myself went to our first appointment with the new PCP doctor. I figured it was better to get in now and get set up that way if anyone needs anything later then we'll be able to get right in. It was an interesting time to say the least.I had called ahead when I set up the appointment and asked specifically if the doctor had experience with

2005-11-16T15:19:00.000-07:00

So Far So Good- New EndoYesterday was my first appointment here with the new endocrinologist. We will call him Dr. G since I'd rather not share info on where I am (mother is still stalking you know...get a life woman!) and he seems to actually know something about MEN2a and the other MEN syndromes as well. That's a nice thing considering most of them say they know something and then don't. I'm

2005-11-14T12:43:00.000-07:00

Note To Self: MEN2a + Long Move = VERY Sick Me.That pretty much covers it doesn't it? I always thought long moves were hard before but this was my first one since diagnosis and surgeries. I think I want my adrenal glands back thank you very much. ;) WOW, talk about feeling wiped out! It took me a full week to recover and even know I spend most days with a migraine.Before we moved I had Dr. L

2005-10-20T13:45:00.000-06:00

I honestly can't gather my thoughts enough to make a good post but I wanted to at least post a few things.First is Sis- she is doing so well on the Levothroid. There haven't been any headaches since we switched from Synthroid. It's so wonderful. I let Dr L know because she was interested in seeing if it would work.Second- I had them draw some blood today for calcitonin levels, intact PTH, and

2005-10-09T20:47:00.000-06:00

As I've reported before, Sis has been having bad headaches since her thyroidectomy in March. We've had a full blood panel done and it came back fine so we've been stumped as to what it could be that is causing this. Well I was reading on the ped thyca group I'm on and one of the moms was talking about how her daughter kept having headaches too. We both realised that both of our children are on

2005-10-07T20:11:00.000-06:00

It's My One Year Anniversary TodayToday it has been exactly one year since I received my cancer diagnosis. All these thoughts roll through my head and all these things I want to say but I just can't. I remember how scared I was when the doctor told me the news. I was so afraid that I wouldn't make it to Christmas. I thought this was my punishment for something I had done wrong somewhere in my

2005-10-06T02:08:00.000-06:00

Finally Some Relief!Tuesday I went to my appointment with B (actually I saw Brad the PA) and just laid it all on the table for him as far as what's going on with me right now. I told him I've having really bad mood swings that are making me some kind of looney, I am in pain nonstop, I can't sleep, and so on. I told him maybe I just finally had my breakdown and he said he wouldn't blame me one bit

2005-09-29T13:02:00.000-06:00

You ARE The Weakest Link...GOODBYE!!!Monday night the nutritionist called me and we talked. We made an appointment for next week and she told me to keep a food diary. She's not sure she can do a whole lot about my weight because it's mostly thanks to steroids but she says she will try to help me start feeling healthier. Very nice lady and I'm glad she called.Tuesday I had the stress test and it

2005-09-25T22:18:00.000-06:00

Mi Vida Loca!Just when you think things are settling down they go haywire again. First of all, Sis now has bloodwork on Wednesday with Big B. We're testing her for pheos again because ever since her thyroidectomy she has been having headaches. To be honest, after reading on the Ped Thyca board I think she needs to be put on a med other than Synthroid. Dr L wants her to see a neurologist but the

2005-09-22T08:05:00.000-06:00

Sometimes I don't even want to update anymore because I'm tired of posting messed up stuff. *sigh*I had my MRI on Sept 6th and when I called the Pain Specialist for the results I was told "The MRI looked fine but showed some muscle spasming" and that was it. No, seriously... that was IT! Nothing else was said or done and I was told he would go over it with me at the end of the month. So again I

2005-09-02T14:43:00.000-06:00

Doctor Appointments/ UpdatesOn August 30th I had my blood draw for thyroid levels and they came back still supressed which I guess means I'm still hyperthyroid. They were at the borderline level though so we're going to keep me on the 125mg I'm taking now for 4 more weeks, do another blood draw, and if I'm still borderline or more then I'll be going down to 112mg.On September 1st I had my

2005-08-22T19:34:00.000-06:00

Sorry that it has been so long in between posts. I've just felt pretty lost and down lately leaving me not wanting to post anything. Plus we've been moving.As I said, the pain specialist started me on a combined regimen of Zonegran and Cymbalta. After being on the Zonegran for almost a month and a half and the Cymbalta for 2 1/2 weeks I called him and let him know that they were doing nothing for

2005-07-28T08:17:00.000-06:00

July 28 Pain AppointmentJust got back from my appointment with the pain doctor a little while ago. The short version is that it most likely is going to be ANOTHER month before I have any relief from the pain. That alone almost sent me into tears but then of course, it continued.I told him that the Zonegran has done nothing for the pain thus far and all it does is leave me feeling groggy the next

2005-07-23T18:55:00.000-06:00

Update From My Endo AppointmentWell first of all, the results of the kids' bloodwork came back last week. The results were pretty good overall. Both of them came back with good calcium levels which is very good and means Big B is hopefully finally doing well with his hypoparathyroidism. Both of their thyroid panel results came back showing them hypothyroid though so we had to raise Sis up to

2005-07-11T17:39:00.000-06:00

Another Ped Endo Bites The DustWell I took the kids to meet a new pediatric endocrinologist today only to have it go horribly horribly wrong. :( When I called and set up the appointment in the first place I asked specifically if the doctor had ever had a patient with MEN2a and was informed that he had but it had been awhile. This is part of the reason we had chosen him in the first place.So the

2005-07-09T09:06:00.000-06:00

Catching You Up To NowI figured I would just skip the play by play and just catch you up to the here and now so here it is. I had bloodwork done a few weeks ago but I guess the results didn't make the doctors happy so I had to go back and have it repeated the other day. It will be about a week before we get those results back and then we will go from there. I would love to tell you what some of

2005-06-20T19:16:00.000-06:00

Back At Home- Post SurgeryI started feeling lousy on the way home from the hospital Monday (June 6th) but chalked it up to a long few days and having to travel home. Once we got here though things got even worse. The nausea and headache started on Monday, by Wednesday I couldn't eat, sleep, or function, and by Friday I knew I was dehydrated and heading towards a poor state. By the time Vin got

2005-06-12T20:57:00.000-06:00

Jo's Second Surgery- Thyroidectomy w/Lymph Node Dissection and Parathyroid Reimplantation.Say that one five times fast! ;)I'm going to keep the pre-surgery part short so I don't take up too much room. We went down to Tampa on Tuesday night, I had my appointment with Dr. P (the head and neck surgeon) and he told me they would be cutting me more than I thought, I saw Dr. BC's nurse practioner,

2005-05-27T16:11:00.000-06:00

Just a quick update...Well they moved my appointment with the head and neck surgeon and my pre-op appointment to June 1st so we don't have to go down two days early after all. I KNOW it's better because we will save some money but I wouldn't be honest if I didn't say I had been looking forward to us getting to spend a whole day just being together. Oh well, not much to do about it.My CT scan

2005-05-23T13:46:00.000-06:00

My neck surgery is scheduled for June 2nd...next week. We have to be there on May 31st because I have pre-op and an appointment with the head and neck surgeon that day in Tampa. I have two surgeons for this surgery. One will be the same one that did my adrenalectomy and he will do the thyroidectomy part of the surgery and then the head and neck surgeon will remove every single lymph node he can

2005-05-21T11:06:00.000-06:00

CT ScanThe night before the scan, I had to drink one of the barium shakes and about half an hour later the reaction I had the first time to the stuff started again. I started feeling nauseated followed by diarrhea and then mild vomiting. The last two only lasted a few hours but the nausea was with me up until that morning when I had to drink the second shake. Within half an hour of drinking that

2005-05-19T14:59:00.000-06:00

Somewhat MEN2a Related...I'm adding this in because it's a medical happening in our lives and is also because of the recent surgeries etc.Yesterday Sis came up to me and said "Mom, what is this on my head?". When I went to look there was a two inch long BALD SPOT on the top of her head!!! It looks like someone took a razor to her head a few weeks ago and shaved a spot out and now there's stubble!

2005-05-18T14:27:00.000-06:00

Jo's Chat With The EndoSo I didn't really have an appointment with my endo but she discussed some stuff with me. I told her the Cortef is working great and I am feeling ALOT better to which she was glad and said we'd just keep me on that. I told her I'm taking 25mg instead of 30mg and hope to work my way lower for obvious reasons. She told me just to let her know before I do it so we can make

2005-05-17T14:08:00.000-06:00

Big B and Sis- Endocrinologist AppointmentThe bloodwork came back from the kids' tests and Sis can stop taking the Tums now because her calcium levels are fine. I brought up the fact that she gets headaches and turns pale and Dr. L said it doesn't sound like anything having to do with the meds so we're going to set up a full blood panel screen with the kids' regular doctor to see if anything is

2005-05-12T13:48:00.000-06:00

Okay Now MEWell let's see, I was suppose to have my thyroidectomy on May 10th but after much thought I rescheduled it. The reason why is because it has seemed like since the adrenalectomy I have felt worse and worse as time passes. Nothing I did would make it better and I was getting no help from the doctors. I finally emailed Dr. BC about my concerns with feeling like this and adding another

2005-05-10T10:04:00.000-06:00

Well I figured it was time for an update. I guess I’ve been putting it off because it all gets a little overwhelming sometimes. Let’s see- I’ll start with the kids…Big B- is still on the Calcitrol. His last few blood tests have come back low on the calcium. The last one DID show that his parathyroid(s) is/are working so that’s something at least. He’s doing fine on the thyroid meds so far (88mg

2005-04-20T10:15:00.000-06:00

Well I emailed Dr. G (the kids' surgeon) and asked him about the kids' parathyroid being removed. He emailed me back and this is what he said..."Sorry for the misunderstanding. The goal of the surgery is to remove all the thyroid gland. Sometimes to achieve this, we need to shave some of the parathyroid gland off thyroid gland. As a result, the pathologist may see parathyroid tissue in the

2005-04-13T15:13:00.000-06:00

THIS has me a wreck this afternoon..."The second operation which is associated with postoperative hypoparathyroidism is total thyroidectomy. This operation is performed for a number of reasons, but because of the close relationship that the thyroid and parathyroid have to one another (including sharing the same blood supply) the parathyroid glands can be injured or removed. This is very rare and

2005-04-10T15:14:00.000-06:00

My Poor Little GirlSince the kids' thyroidectomies Sis hasn't had a voice. The surgeon said he checked her vocal cords after the surgery and said everything was fine. The day after the surgery she had a little bit of a raspy voice that made us think she was going to be okay. For the last week and a half though she can barely talk above a whisper. I've started getting worried.I can't get ahold of

2005-04-07T17:09:00.000-06:00

Finally Talked To Dr. BC About ResultsI talked to the doctor earlier and the final word is that the liver biopsy DID come back negative meaning there are no medullary TUMORS in my liver. The Octreotide scan showed that the tumor in my small intestine isn't medullary either. So THAT is good news and I'm very happy with that.He confirmed though that I have medullary cancer "seeds" throughout my

2005-04-05T12:15:00.000-06:00

Update On The Film Crew That Never ShowedAs I had said, a film crew from the hospital was suppose to follow us around the day of the kids' surgeries. Not only did they never bother to show up but also never bothered calling us to let us know they weren't showing up.The only reason this pisses me off is because I fought with my teenager over this and spent time preparing my daughter for it. It was

2005-04-03T22:52:00.000-06:00

Bret and Chelle's ThyroidectomiesWe left for Atlanta around 10am on Tuesday, March 29th so that we could get to town fairly early and get settled into the Ronald McDonald House. I was also suppose to meet up with some of the ladies from Amity but thanks to traffic on the way up we ended up not getting to RMH until 2pm so I had to miss out. :( It took about an hour to get checked in and get

2005-03-24T16:36:00.000-07:00

Well I finally got my calcitonin results back in a half azzed way. Dr L's nurse called me and said my results came back "fine". I asked her what the hell "fine" means considering last time they were over 24,000!! She goes "Oh I don't know I guess that means they haven't really changed much". Ummmmm could you LOOK possibly? Come to find out my levels are at 16,090 so basically what they were in

2005-03-23T12:06:00.000-07:00

They're Going To Film Our StoryI got a call from the kids' surgeon asking how we were and if there were any questions I might have before the surgery. I told him "no" and that we were pretty well covered. So then he asked ME a question. He was approached by some high ups at the hospital and asked if he had any rare or unusual cases. He immediately thought of us. The hospital is interested in

2005-03-22T19:40:00.000-07:00

The Kids' New General PractionerI took the kids to their new GP today so we could get established there before the thyroidectomies. She seems pretty nice. She is hard to understand (VERY thick Cuban or Puerto Rican accent) but still nice and very open to things. She only asked me a few questions about us not vaxing Lil Man and then dropped it. I liked that VERY much!All the kids are healthy, good

2005-03-21T08:10:00.000-07:00

Octreotide Scan and Biopsy Test Results Are Back!!! I just talked to the doctor's assistant on the phone and she gave me my test results. Here they are...The liver biopsy- was NEGATIVE!!! The tumors in my liver are BENIGN!!! That's right the cancer has NOT spread to my liver!!!! The octreotide scan- showed uptake ONLY in my thyroid

2005-03-18T12:59:00.000-07:00

Dr. L's nurse called me back late yesterday afternoon and said she wanted me to go to the walk in clinic to be checked. She said with my kidney problems in the past she didn't want to mess with this and knew how much I hate the ER so we would try this first. LOL.They checked my urine and no signs of infection so the doctor just said it must be a BACKACHE caused by the liver biopsy, gave me

2005-03-17T08:39:00.000-07:00

Octreotide Scan, Liver Biopsy, EtcSorry, no catchy title I'm afraid. On Tuesday, March 8th I started my Octreotide scan at H. Lee Moffitt in Tampa, FL. I went in at 7am and had some blood drawn on the second floor and then went back down to Radiology on the first floor and checked in. I didn't have to wait very long and was back in Nuclear Medicine by 8am. The girl injected me with the dye and

2005-03-15T16:12:00.000-07:00

Took the kids to their appointment today with the doctor who is suppose to become their primary care physician. We got there early and sat around about 20 minutes before the girl at the reception desk informed me that the doctor just got called away for a c-section and I had to reschedule. It kind of ticked me off because I had to pull Big B out of school for this but I DO understand that crap

2005-03-02T07:35:00.000-07:00

Kids Have A Surgery DateYesterday we made the trip up to Atlanta to see a pediatric surgeon about doing Big B and Sis's thyroidectomies. The trip went quickly, the kids all behaved on the way up, and we even arrived over an hour early. The only bad parts were that we had to wait over an hour in the waiting room and then over half an hour in the room itself. The doctor DID apologize though and

2005-02-25T18:04:00.000-07:00

I just want to start out by asking if anyone who reads this could please say some thoughts and prayers for one of my best friends, Emily. Today was the two year anniversary of when her sweet baby quit breathing and her whole world changed. Kierra spent the next 8 months struggling for life and basically living in hospitals until she finally lost her battle only days before her first birthday. It

2005-02-23T21:09:00.000-07:00

Today was a bad day filled with just all kinds of bad news. :(I went to my appointment with Dr. L today and of course we went over my test results. First let me say that the lab screwed up two of my tests AGAIN!!! Even though I told them to make sure they didn't screw up. I am so mad and disgusted right now but at the same time the one time I tried to go to another lab it was disgusting and they

2005-02-22T11:33:00.000-07:00

Had to reschedule the Octreotide scan and liver biopsy for March 8th, 9th, and 10th. The main reason is because we just dumped almost $3000 into the van and the black car THINKING they would both be reliable. The van got a new transmission and a few other parts and promptly decided yesterday to start burning oil and the brakes started messing up. So we most likely need either a new head gasket or

2005-02-18T16:53:00.000-07:00

SOME Test Results And Scan Schedule For Next WeekWell finally heard back from Dr. L's office this afternoon. The only test results that came back so far are the cortisol stim test (the adrenal function test) and my calcium levels. So as far as those go there is bad news and then there is worse news. :( My calcium levels are at 10.9 which isn't horribly high and honestly it's just past normal

2005-02-17T16:08:00.000-07:00

Update To NowSo much going on and most days I don't know which way is up anymore.First and foremost, after much thought we have decided that I'm not going to be in the study at Duke University. Part of it was because of money, part was because of time and not having any family (besides Nancy who can only do so much herself), part was because I have a real problem being a part of a study that

2005-02-11T12:43:00.000-07:00

What A Pain In The Hiney!I went in yesterday for my stim test (the test on adrenal function). That was NOT fun let me tell you! They took blood in my left arm and then injected something into my right arm. Half an hour later they took more blood from my left arm. Then half an hour after that they took more blood out of my right arm this time. So in less than 24 hours I was stuck three times in my

2005-02-09T21:06:00.000-07:00

Well several things to update at this point. Dr. BC called me yesterday and we discussed a few things. I told him I was doing well from the surgery and the other symptoms had eased up. Still here but not bad or even worth complaining about at times. I told him I was getting the calcitonin and seratonin tests done today and hopefully the adrenal function test done then as well.I asked him about

2005-02-07T17:54:00.000-07:00

February 7th, 2005Well over the weekend I finally got some decent sleep which felt really nice. I went to the store on Saturday with just Bret and picked up a few things we needed. I got somewhat tired but not too bad and having Bret with me made sure I didn't forget what I was doing. LOLI emailed Dr. BC and his nurse practitioner as well telling them that it had been a week now since I had asked

2005-02-04T02:37:00.000-07:00

Life After PheosThis is the update since I was released from the hospital a week ago. I want to catch things up so I don't forget everything.Friday (January 28th) after leaving the hospital we proceeded to take a drive through Tampa. LOL. So much for resting. Vin showed me where the Aquarium was and then we drove over by Clearwater to visit the Italian Market him and his mom had found. It's a

2005-02-01T11:39:00.000-07:00

Surgery One- The Adrenalectomy (Part 2)Wednesday, January 26, 2005- As I said, I woke up at 6am when the nurses came in and started talking to me. Between 6am and 8am Dr. A came in to check on me and so did an Internalist who honestly was the one doctor who spent the most time checking on me during my stay. Around 8:00 a male nurse (Robert who has a daughter named Jolena- see, I remembered. :) )

2005-02-01T11:23:00.000-07:00

Surgery One- The Adrenalectomy (Part 1)Sorry it has taken me so long to write this. It's been a long week to say the least. I'm going to post everything in one post so that those who actually read here can get the whole story without having to jump around. I'll break it up and make it into individual posts later. :) I'm also not going to be using proper paragraphs so forgive me. LOLMonday,

2005-01-21T16:54:00.000-07:00

Here Goes... EverythingWell day 7 of being on the alpha blocker and I really can't complain too much. Most of the side effects went away about two days ago. I still have a dry mouth and stuffy nose every morning when I wake up and a headache everyday but they’re all small things. Much better than I expected before I started the Doxazosin. My blood pressure has been staying pretty steady under 100