Saturday, December 29, 2007

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 heart and right pectoral wall. We wanted to be safe rather than sorry so I had the other scans on December 19th. Well the results were not what we were expecting to say the least.

Good news: Results for the heart- They feel that it is nothing more than a heart murmur at worst but I will still have a few more tests to make sure. So heart is okay.

Lump in pectoral wall- They feel that it is probably just an infected lymph node but not sure if it is a bacterial infection or the medullary cancer. Either way it's one lymph node in that spot and not worth worrying about at this point.

Okay news: I have a total of eight cancer infested lymph nodes in my neck. There are three on the left side under my jaw, one on the right side under my jaw, three on the right side of my neck, and then the one on my left side that we already knew about. The plan at this point is to remove the one on the left side no matter what and then if biopsies confirm medullary cancer in that one I will be sent to either Dr. Jeff Moley in St Louis or to MD Anderson in Houston to have them pick through my neck and remove every single lymph node etc that they can find. Dr Moley is highly recommended and will not miss anything. He is my best chance for keeping it out of my neck at least for awhile.

Now for the bad news: We now know why I've had this cough for so long. They found six nodules in my lungs at basically three in each lung. They are all around the size of pencil erasers right now. They also found cancer infested lymph nodes in both armpits and one in my right breast (not behind it like the other thing but in). What does this mean? Well it means that the medullary cancer has definately spread past my neck and isn't curable but that isn't as horrible as it sounds. I already knew all that so its okay.

We can't do anything about the lungs right now because the nodules at the size they are now aren't worth going in after. They might take years before they are actually big enough to bother operating on and even then they have trials going on right now that are showing alot of promise in maintaining and shrinking medullary tumors. So that means that the cough is here to stay.

I have been exceedingly tired and had been sleeping almost ten hours a night which is something I haven't done since I was little. When I went to my Family Doctor and told him he said it must be depression. To be honest, I was extremely pissed off! I knew it wasn't depression and I was feeling just fine! After having bloodwork done we now know that my thyroid levels (TSH) were at 19 which is definitely off. That explains the extreme tiredness and is easily fixed by upping my Synthroid.

No clue still why I can't eat without getting sick but I found something that I'm going to ask my PCP about. It might just be a simple matter of I got food poisoning once, the bacteria stayed, and now I have chronic gairdisis is all. So if that's it then I will be eating again soon.

So that is the update. I have an appointment with an ENT doctor on January 8th My endo would have liked it to be sooner but that was the best they could do which I understand. The ENT doc will check my neck, maybe do another scan, and then decide how we go about removing the left lymph node that is pressing on my carotid artery. That should take care of a few problems with it gone. Hopefully one of them is the mini-strokes. I'd like that alot!

I will have whatever other bloodwork and scans need done within the next two weeks and probably surgery by the middle of January at latest. Then when we get the biopsy back its results will decide if I'm taking a little vacation or not. If not then we just wait for the cancer to get bigger in my neck and then do surgery. I know it sounds stupid but since we can't do radiation or chemo and we already know the cancer has spread, it really doesn't make sense to cut me open constantly for the little stuff.

So don't worry. I throw up alot, I'm getting over being so tired, I cough alot, and I've got a bitch of a cavity but Christmas was nice this year and I enjoyed it. I got the one thing I wanted most- not one single argument the whole day! It was awesome! I'm content and I'm enjoying my family.

Sunday, November 25, 2007

No Hump No Hump Just Ugly Little Lumps

They 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 didn't expect it this soon though so that kinda sucks. *sigh*

The part I didn't expect is that there is a questionable spot on the scan behind my right breast and also two more in my heart. Yeah, a little scary. I figured I would go in and hear that NOTHING lit up and just go on with what to do with this lymph node that is pushing on my artery. So much for thinking right? It's not time to worry yet because the spots in my chest and heart very well might be nothing. That's what getting more scans is going to find out.

So I have to have three scans done- a CT Scan of my neck and chest (with and without contrast), an Ultrasound of my chest, and an Ultrasound guided biopsy of that lymph node in my neck. The first two will tell us if there is any reason to worry about the heart or chest and the last one is just so a surgeon will agree to operate on me. My endocrinologist said the scans should be scheduled pretty quickly so I will keep you updated.

I've also been quite sick this month for some reason. The fibromyalgia is with me everyday now, I'm getting horrid migraines, nausea and/or vomiting everytime I eat, no energy, and just an all over feeling like I'm burning with fever yet on a thermometer I never go above 100 degrees. No blue what is going on at this point. That mystery cough is still with me too. I've had it for over a year now but nobody seems to think it's important.

So much for thinking I got to relax and kick back this month. Hey, if I can't laugh at it then it wins and I'm a sore loser. ;)

Wednesday, October 24, 2007

Long Time No Post

I 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 of my neck that is either pressing on our wrapped around my carotid artery.
- I now have the joy of giving myself B12 shots weekly for one month and then monthly after that.
-I can't eat without getting sick now.

Since the middle of July I have been having these "episodes" where I get sudden jerking, then numbness and tingling down the left side of my body. It usually wasn't a big deal and I honestly just mostly ignored it. That is until I had a bad one at the end of August that sent me to the ER. I had just layed down because I was feeling very tired when right after closing my eyes my left arm jerked quite violently. Immediately after I started feeling this creeping tingling and numbness spread from my face all the way down to my foot. Needless to say it scared the hell out of me.

By the time we drove the 45 minutes to the ER the episode was pretty much over and even though all my symptoms matched a TIA and even though all the doctors and nurses said TIA AND even though I was having problems pulling up words to finish my sentences... they sent me home. Needless to say that made the stubborn side of me win out and I didn't go back for the following two I had after that. I should have I know. I just didn't.

As I said, I have been having problems "finding" my words and finishing my sentences ever since that attack in August. It of course got worse with each following attack and almost two weeks ago I had a period of time where all I could do was sit and stare without even blinking, then numbness, and then I had trouble talking for the rest of the day. Yes, I told my doctor about it. No, he didn't do anything. Yes, I am hiring a neurologist.

Bottom line? I'm going to fucking die before anyone does anything. Seriously.

Some people know that my doctors advised me to apply for Social Security Disability back when it was clear I had nerve damage to my neck and shoulder after the second surgery plus other things starting to go wrong. I applied back in June 2005 and by October 2005 they had denied me. I appealed that one only to be denied again in April 2006. I of course appealed that one and hired a lawyer. Social Security was not basing their denials on my medical evidence or even by anything a doctor who was even remotely familiar with my medical problems. They just denied me pretty much so I would give up and go away.

My last hearing was on September 12, 2007 and let's just say that the judge didn't ask the vocational specialist any questions and it only took me two weeks for her to rule in my favor. That is bittersweet because while I'm glad the battle is over and I can finally help out my family, I'm only 32 years old and being considered disabled wasn't one of the things I had on my To Do List. I'd rather be healthy and be able to chase my youngest child around. I'd rather be training for a marathon and proving to myself I can run that far. I would rather be doing anything other than sitting here waiting to collect a small little check each month that won't even pay my mortgage. Something is better than nothing and I AM very thankful, I just wish I had worked better jobs when I was healthy so I had something decent to draw on now.

So we are just waiting for the Notice of Award that tells me what I will get each month and how much I will get in back benefits for the last two years. Any money that comes from back benefits though is already spent as we need a new water heater, dental work for Lil Man and I, credit cards to pay off, and bills to pay. Sounds like tons of fun doesn't it? Woohoo look at us live it up! ;)

At my last endocrinologist appointment, I told her about a lymph node that has been quite large and painful on the right side of my neck for awhile now. It doesn't get any smaller and it never goes away so it had me worried about it being new cancer. Once she palpitated it she was able to tell me that it's actually either pressing on or wrapped around my carotid artery. She couldn't tell me though whether or not she thought it was cancerous. To find out (and because it's that time again) I have to take a two day Octreotide Scan like I did back in 2005. Wherever I light up like a Christmas Tree that is where the medullary cancer is. Maybe it will even show me if I have a new adrenal tumor forming.

As soon as we get the results back on that then I will have surgery to remove the lymph node. The only scary parts of this surgery are that it's so close to the carotid artery and I don't want to be flayed open like a fish again. This might also explain the ministrokes also knowns as TIA's (transient ischematic attacks).

The last three times I've had my B12 checked it has been very low so my endocrinologist tested me for pernicious anemia. Because I'm having malabsorption problems that keep getting worse as well she tested for celiac disease too. The anemia had me wondering but I knew I didn't have the celiac disease and I was right. Both tests came back normal though so no helpful news there.

Two weeks after that appointment I had one with Dr. M where I told him that I had developed two sores in the corners of my mouth (I don't get coldsores nor do I have the herpes simplex that causes them so that was odd for me) that refused to heal plus the pain in my hands and wrists had moved up to my elbows making me want to gnaw my arms off! My feet and legs weren't doing much better. After considering my low B12 levels, the dual sores, and the pain he decided we should try a B12 shot and see how it makes me feel.

ANYTHING that might take away some pain or make me feel better is something I'm going to try and he knows that. LOL.

When I saw Dr. M last week I was happy to tell him that the pain in my limbs had eased back off, the sores healed three days after the shot, and I wasn't getting sick as often as before (stomach wise). This was very encouraging to him so we decided that for the next four weeks I will get a 1000mcg shot of B12 in my arm and then once a month after that. Dr M said that it takes six to eight years to develop a B12 deficiency so one shot wasn't going to cure everything but at least now we know we have a chance of fixing a few things. The hope is that by kick starting the B12 in my system and liver that it can make my levels almost normal.

Why am I giving the shots to myself? Well because I've had a huge fear of the day arriving when I have to give myself the emergency steroid shot so I figured the only way to get over that fear is to conquer it. The nurse showed me how to do the shot, I did it, and it wasn't that bad actually. Now I also won't have to drive into town every week just to have them stick me. I also can enjoy grossing out the kids because you know they're going to be curious and watch! haha

So that's about it for right now. My scan in on October 30th & 31st and hopefully I will know all I need to within a week after that.

The kids are doing great and have been very healthy thankfully. My hope is that I'm taking all the medical problems so that they don't have to. I want nothing more than a healthy life for these kids and I hope they get that.

Monday, August 20, 2007

August 20, 2007

I 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 guess we go from there. I think at this point I'm going to ask to be referred to a gastroenterologist and see if they can figure out what's going on. Everything I've read thus far is telling me that there are a ton of tests I should have done BEFORE a colonoscopy so I'm not willing to just rush in and have them shove that camera up my ass just yet you know?

All I do know is that I'm a wreck and would probably welcome ten fibro flare ups if it meant this other bullshit stopped. It just gets real old is all. I'm sick of being sick! Time for some of this health crap to get taken care of so I can actually enjoy my life.

Tuesday, July 31, 2007

Lyme Disease and Pediatric Medullary Thyroid Cancer

I 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- Michelle says "MDJunction is a health community focused on becoming a free center for Online Support Groups". So if you have Lyme Disease or know someone who does please take the time to check this group out. No one should have to fight alone.

I also received an email from my friend Mary asking if I could pass on some information that was shared on our Medullary Thyroid Cancer group. We have all watched the progress of the Zactima trials for a few years now but them doing a trial study on children is new. I have seen some fantastic results thanks to Zactima and honestly wouldn't hesitate to use it myself when the time comes. Here is the post by Jan Halzel...

Hi to everyone, I just wanted to take a minute of your time to tell you more about the new Zactima (zd6474) study which is about to enroll its first patients. The study is for children with hereditary MTC. The trial is being conducted asa collaborative effort between Dr. Wells and the Pediatric Oncology Branch of the National Cancer Institute in Bethesda, MD which is just outside of Washington, DC. All of the patients will be admitted to the NCI Clinical Center. However, some of the patient's treatment can be managed by their local doctor, therefore travel to the NIH will not be as frequent as with the adult trials. It is expected that help with expenses will be provided. Enrollment will be open to children who live in the U.S. or Canada.

As most of you know, Zactima has shown promising activity for hereditary MTC in adults. Unfortunately, there are also children with advanced MTC who need further treatment. This trial is intended for children with advanced local or metastatic MTC who have been advised by their doctor that they needfurther treatment. To qualify for the study, they need to have a measurable tumor that is at least 2cm (or 1cm if on a spiral CT). If you know someone whose child might benefit from this investigational study, please be sure to pass along the information.

This is an important opportunity for children with this disease. The trial is scheduled to open at the NIH during the week of July the 9th. For more information, please feel free to contact Dr. Wells directly at 919.201.0310 or via his NIH email address which is
somatic mutation M918T (sporadic)
currently on ZD6474. "

I would like to add that Dr Wells is an amazing man. He is the most caring doctor I have ever known and he cares more about his patients than anything else. If I were to ever lay my childrens' lives in a doctor's hands, it would be his.

Sunday, June 24, 2007

New Endocrinologist- Again

I 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 remember. I just had all this done in February but I can understand her wanting fresh results for her own records. Besides, I'm so use to blood draws at this point that it doesn't bother me at all anymore.

The calcitonin came back pretty much the same as before which is good, my TSH levels are good as usual, my intact PTH was actually close to normal for once so that was exciting, calcium was really good, and the only problems were with B-12 and magnesium. Dr TE just told me to try taking a daily vitamin and see if that helps.

I'm very glad I listened to Dr. M and made an appointment with this endocrinologist because she seems like the kind that cares and will listen but also knows what she's doing and can take control of your care if need be. I like knowing that she knows about MEN2a and will know what's going on with me.

Now all I have to do is find a new rheumatologist (because of Dr Jerk I've been weary of going to another one) and maybe look into an oncologist again.

Tuesday, June 12, 2007

Insurance Companies Suck Too

I 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 write down in his notes what he said to me so he was able to lie his way out of the whole thing even though Dr. M said the notes that were sent to him basically stated Dr. Jerk was finished with me! They didn't bother to ask Dr. M any questions. Of course, why would they because then it would mean they were actually doing something.

That creep sat there, looked me in the eye and said... and I quote-

Jerk- "Well we won't need to see you again unless something new comes up"
Me- "So what does that mean? So I don't make anymore follow up appointments?"
Jerk- "No, there's nothing more I can do for you. Okay, so you don't even need to go by the window on your way out. Good-bye"

That is exactly how the conversation went and that jerk lied his ass off when questioned! I know he's ignorant but it's upsetting to know that Lovelace Health doesn't care about their customers either.

I sat in my van and cried for TWO HOURS because of that asshole and when I file a complaint I pretty much get told just to shove it! Nice, I'm very happy to know that each month money is being taken out of my husband's paycheck to pay for insurance through this company!

Until some of these doctors pull their heads out of their pompous asses we as patients are damned if we do and damned if we don't.

I had an appointment with a new oncologist that I cancelled when I received the insurance company's stupid letter. I'm just not going to do it anymore. I'm finished. They win. I'm through being a good girl and going to all these doctors just to get treated like dirt because they think they know it all.

Unless you are a doctor that specializes in MEN2a and/or medullary thyroid cancer then you don't know even a quarter as much as I or most other MENnies I know do. WE study more than just a chapter on it. WE live it every day of our lives. WE are the ones who do the research while you sit back in your chair with that smug look on your face bluffing your way through our appointment. WE educate ourselves to understand this because doctors like YOU could care less.

It's because of YOU that most of us have been through botched surgeries, problems with medications, scary trips to the ER, and left in pain. It's because YOU think you are the be all end all. Here's a little truth to shove down your cocky self-righteous throats... you don't know squat! You know nothing and your manners with patients suck even worse than your attitude! But hey, what do you care? No matter what you get your money and isn't that all it's really about for you? It surely isn't because you want to help people. Every single one of you doctors with your heads up your asses make me sick!

To the doctors who truly care, who actually listen, and who give us even just a little respect and credit for knowing what we're talking about as well... Thank you. Thank you from me and my children. You are too few and far between which is a shame. Knowing you are there though helps people like me not just give up hope. Thank you for that.

Thank you to Dr. Jennifer Lawrence for crying when she gave me the MEN2a results on my children. Thank you for caring for them during our search for a ped endo. Thank you for trying to talk me out of going to Tampa for my surgeries. I'm sorry I didn't listen to you.

Thank you to Dr. Samuel Wells for all the phone calls two years ago when we were trying to figure out if I was eligible for the study. You always cared first and foremost about how the kids and I were doing and even when we knew that I couldn't be in the study you still cared. That meant alot.

Thank you to Brad Ridge the PA at Valdosta Family Medicine Associates PC. If it wasn't for you who knows when the MEN2a and cancer would have been found. You literally saved mine and my childrens' lives and for that I am forever thankful. Being upset over a pregnancy test seems so silly now. ;)

Thank you to Dr. Christian Meuli for always listening to my ideas, thoughts, and suggestions. Thank you for letting me be a part of my healthcare. It's because of you that I stand up for myself and my kids with other doctors. It's because of you I know we deserve great care. Thank you for that.

I know that anytime someone Googles any of those names they will be led to this blog and hopefully they will read about the great care providers I listed. If only there were more doctors like these in the world it would make things so much better for us and them both. Of course, if all doctors were like them then I couldn't say how special they are now could I? ;)

Sunday, June 10, 2007

Okay, Scratch That

I 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's a fart". UGH.

So I'm just going to go with what I had planned on calling it which is Cancer Is The "Easy" Part... It's Everything Else That Is Killing Me!!

Enjoy and I promise, no more yo-yo blog titling. ;)

Sunday, May 20, 2007

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 and despite being dealt such a crappy hand (the cancer) she has been such an upbeat person through her struggles.

Patsy has seven children and they just really need their mama for awhile longer so please pray, keep her in your thoughts, light a candle, or whatever it is you may do in times of need for her. I'm not very good at this since as an atheist I don't pray but I'm not beneath asking those who do pray to for one of their own. She is deeply in my thoughts though and my heart breaks with each tear I shed and believe me, this woman is so special that if you even knew of her you would be crying as well.

Patsy- To say I admire your strength would be an understatement. You are amazing and I hope to someday have even half of the grace and class that you have. the strength you gave me through watching you. You are the epitomy of strength and you will always be one of my heroes. I am proud to know (even if not in the flesh) someone as wonderful as you. Thank you.

Fight mama, I know you're tired but just keep fighting.

Sunday, April 22, 2007

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 ask some questions. He had his mind made up before I even got there that he was going to ditch me. Of course, he made sure he got his money and copay first. Jerk!

I told him I wasn't on the Cymbalta any longer because as I had informed him several months earlier, it was causing severe mood swings and I know for a fact it's the Cymbalta because the same thing happened two years ago when I was given it for the nerve pain in my neck. That was the first "stupid b*tch" look he gave me. Then he asked what I've been doing for exercise. I was quite proud to tell him that I've been taking daily walks with Lil Man and also started a Tai Chi class at the local community center. I figured he would be happy because studies are finding that Tai Chi helps fibro. Nope, wrong answer. Instead I was told how stupid it was to do Tai Chi and asked for the NINTY MILLIONTH FREAKING TIME if I joined Curves like he told me to. I was told that I needed to do strength training and to "get over it" (direct quote) as far as my fear of the flare up pain that always comes afterwards.

For the ninty millionth time I told him that we can't afford stupid Curves. This is when I received the second "stupid b*tch" look. I am convinced at this point that the butthole owns stock in Curves or an actual branch himself. He has NEVER told me exercises I could do on my own. He has only ever told me to do Curves. Period. I think out of all the doctors I've been through, he is the most ignorant.

If you live in New Mexico and are in need of a rheumatologist, please email me first and I will tell you my opinion on who not to go to. There are so many others in town that I feel could easily do a better job and who probably don't have stock in Curves!

So the end of my visit was me asking him if it was okay for me to see a chiropractor just for an aligning of my spine (nothing to do with the fibro). He cut me off midsentence with "That won't help". So I said again, not for the fibro and get "whatever it's your choice". Ummmmm okay. So I ask if getting a deep tissue massage is okay and the answer to that is "do what you want and we won't need to see you again at all". Huh?

Yep, I was fired for not going to Curves. Unreal I know. Do you know what happened after I left his office? I sat in my van at Walgreen's and cried for TWO hours straight while my husband practically begged me to just come home. Dr O left me feeling like a loser and like I had wasted the last year of my life because he never ever helped me with any of the fibro pain. Ever!

If you are a doctor reading this then seriously think about the way you treat your patients. Just because you have a medical degree does not mean you know everything. Patients are human beings and they are in your office for a reason and that reason is not to be belittled by a pompous ass!

I told Dr. O of my pain several times. I told him that what we were doing wasn't helping. I never once asked him for pain killers and was willing to look at things that were not tied to medication to help me so it's not like I was some junkie that came into his office wanting narcotics! I was a woman who had already been through a year (when I first saw Dr. O) of constant pain, two forms of cancer, seeing my kids have surgery, and nerve damage and hoped he would help me find just a little relief from this so I could be a mother to my children. HE told me I had fibromyalgia not the other way around.

Two days later I talked to Dr. M about it and I will post about that too because he really deserves his own post.

Today I called our insurance company and filed a formal complaint against Dr. O . It's too late to help me but hopefully in the future he'll think twice before being a jerk to someone else.

Monday, April 02, 2007

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 bacteria are spreading, slowly but surely.
5. That's where the government put the chip to track my movements.
6. It's the only way to smuggle drugs these days.
7. What scar? What are you talking about? Oh my God! That's HUGE!
8. I had to sell organs to get off the street.
9. I should have listened when Mom said not to scratch that mosquito bite.
10. That's where my Siamese twin was attached.

Friday, March 30, 2007

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 since this for the pheos and medullary cancer.*

I figured that I would post some information about MEN2a and the things that come with it as well as links for anyone who is interested to read.

"Multiple Endocrine Neoplasia II (MEN II) is a hereditary disorder in which patients develop a type of thyroid cancer accompanied by recurring cancer of the adrenal glands. One type of this disease (MEN IIa) is also associated with overgrowth (hyperplasia) of the parathyroid gland. The cause of MEN II is genetic -- a mutation in a gene called RET. Multiple tumors may appear in the same person, but not necessarily at the same time. The adrenal tumor is a pheochromocytoma and the thyroid tumor is a medullary carcinoma of the thyroid. The disorder may occur at any age, and affects men and women equally. The main risk factor is a family history of MEN II." Excerpt from MEN2a.

Basically all that means is that I inherited a mutation in the RET gene (codon C634R) that causes medullary thyroid cancer, pheochromocytomas, and in my case hyperparathyroidism too. Ninty seven percent of people with MEN2a develop medullary thyroid cancer, 50% develop pheos, and 20% develop parathyroid problems. Lucky me got all three. WHO I got this from I don't know. My mother and I are not on speaking terms so she won't tell me the results of her testing and she has denied me my birth father's true name my whole life. So I get to be considered the first in my family history from here on out to have this. We believe it came from my father's side though because I have 6 aunts and uncles and there was never word of this before now. It's hard not knowing for sure though and had my mother been a little less selfish I might not be as far advanced in my cancer as I am now. :(

Symptoms of MEN2 can include severe headache/migraine, heart palpitations, rapid heart rate, profuse sweating, chest pain/angina, abdominal pain, nervousness, irritability, loss of weight, diarrhea, cough, cough with blood, fatigue, back pain, increased urine output, increased thirst, loss of appetite, nausea, muscular weakness, depression, and personality changes.

I've had problems with some of these things over the years but I feel that I am one of the lucky ones. I am not in alot of pain and have only dealt with some things here and there over the years whereas some people have felt poorly and this has completely changed their daily life. For awhile I just thought I was a lazy person and just a weinie to be honest because all these little things would go on. I'm also a very stubborn person though so I have always just gone on and not complained about any of it.

There is no "cure" for this unfortunately although there is hope for one in the future. I am keeping my fingers crossed because my two oldest children have tested positive for MEN2a as well. Only my youngest son tested negative. Had I known about this when I was younger then I could have had a thyroidectomy and been saved from ever having the medullary cancer. We would have known to watch for the pheos and my bones and teeth could have been spared from the hyperparathyroidism. All of this could have been so simple yet someone's selfishness has made it so complex. Of course, I never would have had my children either sooooooo...

Since we've found this fairly early in my children they will have the thyroid surgery and hopefully be cured of the medullary cancer. We will unfortunately always have to watch for the pheos and they have a 1 in 5 chance of developing the hyperparathyroidism. At least they will never have to have my life and go through all I'm about to. For that I am very thankful.

What is Medullary Thyroid Cancer? There are four different kinds of thyroid cancer- papillary, follicular, medullary, and anaplastic. There is also recurring thyroid cancer as well. The first two are the ones most people get and can be treated and possibly cured with radiation therapy and chemotherapy. Anaplastic is a very fast moving and very deadly cancer. It's the one you just don't want to get. Recurring I honestly know nothing about and I apologize for that.

Medullary cancer is thankfully slow moving but it can not be cured by radiation therapy or chemo. In fact, neither one of those really does much of anything for my kind of cancer. People say to me "Well at least you won't have to go through chemo" and I am thankful for that BUT what they don't get is that I will also never know what it's like to be cured or in remission. You might think not having to endure chemo is a great thing but for someone who wishes for a cure and hope, it's not.

Anyway- this cancer is malignant and goes through C cells and calcitonin. Here is a link to help - Medullary Thyroid Info. As you can see there, around 700 cases are diagnosed per year in the US of MTC. They give people like me who it has spread in and who have tumors over 1cm less than a 15% chance of survival after 5 years. Does that bother me? Some of course, but I know of people who have had it worse than me for 20 years so I say "Pppppfffffffftttttt" to their 15%. ;)

What are Pheochromocytomas? Pheos are adrenal tumors that are usually bilateral in MEN patients. Only 10% of the time are they malignant so the cure for them is to have an adrenalectomy. Some people only get one gland out and the tumors never come back. Others battle them constantly until both glands are removed. I have a tumor on each gland and will have to get both glands removed. My children thus far have tested negative for pheos but we will always have to watch and wait.

The most common symptom of pheos is high blood pressure. Other symptoms can be found here along with more information Symptoms of Pheochromocytoma. All three of us have normal blood pressure which in my case the doctors find interesting. With my pheos as big as they are I guess I should be suffering from hypertension but I have always had normal to low BP... thankfully.

What is Hyperparathyroidism? "Hyperparathyroidism is excessive production of parathyroid hormone by the parathyroid glands." Excerpt from AllRefer-Hyperparathyroidism. As you can read at that link some of the symptoms are a royal pain in the butt. For me the itching, "bone" pain, ulcers, just over all achiness, and fatigue get to me. The fact that this has sucked most of the calcium from my teeth upsets me because my teeth are horrible and in a bad state of decay that no dentist could have ever saved me from. I've also had more kidney and UTI infections than I can count and blockages to my right kidney as well. The hypercalcemia that results from it has caused a slight curve in my spine (scholiosis), memory loss, bone and muscular pains, and flank pain as well. I think I hate the hypercalcemia more than anything.

Hopefully what I've posted and the links help you understand this more. You can also Google for MEN2a, pheos, or any of the other stuff to get more information. Thank you for reading.

Thursday, March 22, 2007

So Much For That

I 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 (we're starting from the bottom up again on the painkillers because I'm just not willing to get into the heavy duty stuff) and back on Neurontin for the peripheral neuropathy. I also have to make an appointment with a new endocrinologist, my rheumatologist, and wait for my referral to an oncologist. Busy busy me.

Until then....

Tuesday, March 06, 2007

Just A Quick Update

aka 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 of my neck, chest, abdomen, and pelvic area specifically. What we are looking for is medullary cancer mets in two of those places, check the fibrosis and hemangioma in my liver (bigger? smaller? more? less?), and then the elusive "tumor" in my small bowel. We already know that the cancer is coming back in my neck but we're hoping it's not forming in the lymph nodes in my chest yet or anyplace else.

If we don't see a tumor in the small intestine this time then I will finally breathe a sigh of relief and consider it nonexistant. In 2004 I had my first scan done (with barium and iv contrast) in Georgia which came back showing a tumor in my small bowel. About a year later I had another scan done here(with something else since the barium made me extremely ill and iv contrast) that came back not showing anything. My endocrinologist (at the time- FIRED) decided that their scan was right, Georgia's was wrong, and blew everything off. That did not sit well with me at all so that is why I'm having it checked again and doing it with the barium despite my reaction to it.

As I said, if it comes back not showing anything then I will happily consider that chapter closed and finished with a YAYYYY! ;) If it does show up then I will be having surgery this year to remove it. As anyone with no adrenals/adrenal insufficiency knows... surgeries are just tons of fun! *thick on the sarcasm* but with MEN2a and metastatic MTC it's a necessary evil.

So as soon as I get the results I will update again. Nothing exciting going on besides that. I have to see my rheumatologist soon and restart medications for the fibromyalgia and etc, I need to hire a new endocrinologist, and I need to find out if I should add an oncologist to my "team". Fun stuff I tell ya! Woot Woot. lol.

Also, I'm sorry for so many downbeat posts. I hope the people who read understand that after two years all this has worn on me and this is finally my "depressed" phase I guess you could call it? Being in pain everyday is hard and sometimes it comes through in my typing. I apologize for that. I don't mean to bring the folks who are nice enough to read this down but I have a feeling that most of you do understand and for that I am thankful.

I'm still hanging in there. Sometimes a finger slips off the ledge a little but I'm still holding on. ;)

By the way- tomorrow is my *gulp* Thirty-Second birthday (yep that 3 and 2). How can I be in my 30s when at least in my mind I still feel like I'm in my 20s? Then again, my body feels like its in it's 80s so maybe that evens things out. LOL.

Friday, February 23, 2007

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 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 genetic disorder, you're stuck with it, watch out for growing tumors. About sums it up!

Anyway, I spent most of December and all of January too sick to do much of anything. In the middle of December we moved into our very first house. Ever seen the movie "The Money Pit"? Yeah, we live in it! So stupidity took over both mine and Vin's common sense and I ended up in alot of pain from moving and cleaning. Well that wiped me out for two weeks. THEN we went to one of our playgroups and Lil Man came home with a stomach virus that worked it's way through everyone in the family. Lil Man had it the worst, Big B got hit hard for about 24hours, Sis just had some vomiting, and Vin had about the same as her.

Me on the other hand- a train wreck as always. ;) I ended up sick for three weeks which not only covered the stomach bug but also me going into adrenal crisis twice, three fibro flare ups, and my version of a nervous breakdown. It was great lemme tell ya! The breaking down part came at the end of the third week so it took me another two weeks to get over that, a week of migraines, one more journey into adrenal crisis, and FINALLY it was all over. WHEWWW.

I'll just go by disorder/syndrome and catch you up that way-

Fibromyalgia~ Still got it. Cymbalta- don't work, Flexeril- don't work, Vicodin- don't work, and Percocet- you guessed it... don't work. I'm currently on nothing for the fibro pain and living each day in kind of a mini hell. I'm sure it's not the medications' faults either. I'm one of those oddballs that builds a tolerance to anything and everything I take within a month or so. This of course means that I can't get pain relief or much of anything like a normal person. More often than not I'm just left to hurt because there isn't much help. :(

MEN2a~ Yep, still have it. Imagine that! The kids do too. Amazing! LOL.

Medullary Cancer- Had a new calcitonin test taken last month and the results were of course that my levels are rising even more. I finally realized that even though they were rising on the last test I think I still held hope that maybe it was just a fluke and this time we would see them either stay the same or be lower. Not so lucky I guess but at least I'm not shocked by knowing the cancer is regrouping.

New tumors/lumps are forming in some lymph nodes in my neck (easily palpitated) and as quickly as those have come I'm going to say that they did a lousy job at Moffitt of removing lymph nodes. No way you could have missed these you guys. They are right there for all to see! *shaking head* I won't be getting surgery again at this time. I'm not going to let someone make me look even more hideous by adding more scars to my neck right now. There is no stopping this at this point so I might as well wait until we have more in my neck and THEN let them hack me open.

I have a full body CT scan in and chest xray about a week. We will be checking everything at that time. We're going to find out once and for all if there is a tumor in my small bowel, see how much is in my neck, see if there are any new hemangiomas or fibrosis in my liver, and see if this cancer has moved to the lymph nodes in my chest yet because I've had a cough that won't go away for about four months now. The chest xray is also to look for masses and make sure nothing is going on to cause my chest pain and numbness in my right arm. So all will soon be revealed... don't touch that dial! lol.

All my other bloodwork came out fine which was nice. My TSH levels are good on Synthroid 125mg, my intact PTH was around 99 I think which is good for me, my calcium levels are good, and I think the only things that were a little low were B12 and magnesium but they were at the edge of normal so I'll work on making them better but no reason for us to worry. I still don't have diabetes which is great.

The kids are both doing well. It's about time for them to get to "pee in a jug" again (24hour urine analysis for pheochromocytomas). lol. Big B doesn't mind so much because he has the equipment to be able to pee in the dang thing but poor Sis gets the female side of it which is a pain in the ass! Come to think of it, I guess it's about that time for ME again as well. OY!

Please keep the kids in your thoughts over the next two months if you don't mind. I honestly couldn't handle one of them having adrenal cancer right now and if I can't deal with it then I'm not going to be much help to them with dealing with it. I so hope they never end up getting it. Having no adrenal glands honestly sucks the life out of you. I have a feeling I'll die from that crap before I'll die from the cancer. *sigh*

So I am currently on are Wellbutrin 300mg daily (told ya I finally cracked! *wink* Just too much and it finally got to me so mama went for the drugs! lol), Cortef 10mg daily, Florinef .025mg (or is it mcg?) daily, Synthroid 125mg daily, and I now take an aspirin everyday until the xray results come back. Dr M is thinking maybe all the stress is causing anxiety and it's manifesting as chest pain and limb numbness. I hope he's right because I would much rather have that! lol

Had a follow up with Dr M on Wednesday. Went over test results and started working on getting the CT scan and chest xray set up. He also gave me a scrip for AmbienCR to help me sleep but the insurance company is being such a butt about it that I just bought some TylenolPM and said screw it. Something is better than nothing. Obviously prescription sleep aids don't help me any. Can I just say that Lunesta sucks? Really, it does. Not only did it not help me sleep (at neither 2mg or 3mg) but it also leaves you with this horrid taste in your mouth like you slept with a mouth full of unwashed change! Ewwwww. About all I got out of the whole sleep aid thing was some pretty tripped out dreams (and here I thought I'd never see my ex-husband again! LOL) and that foul taste. Oh and the sleep aids were to try to help me actually sleep at night because I've had nothing but broken sleep for the last 17 years which makes my fibro even worse. :( At least now we can say we tried right?

Thanks for reading as always and if you can think of anything interesting for me to post about having to do with MEN2a, medullary cancer, pheochromocytomas, or something else related then drop me a line. I'd be happy to post it.