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.

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.

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.

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 AllRefer.com- 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.

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....

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.

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 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.