Saturday, December 29, 2007

Coming Out Of Hiding...

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.

Again, I'm sorry I haven't posted in awhile. With feeling so tired it has been hard for me to get online and even harder to sit and type. I've spent most of my offline time sitting on the couch trying not to fall asleep. Pretty sad I know. LOL. I'm back and I will keep you in the loop from now on. Thank you to everyone still reading and who has stuck it out with me. I appreciate your friendship more than you know.

Have a wonderful holiday season my friends!

30 comments:

A Little Revolution said...

Jo, I'm glad you have a plan and a good doctor in mind. We'll most definitely pray for you. Hopefully you can keep this at bay for a long time.

I'm glad you had a good Christmas. Have a Happy New Year! Don't stay up too late. ;p

Frankie said...

Jo, I've been thinking about you a lot since reading Meg's blog. I'm glad that there is a plan. I hope that you're feeling rested very soon.

Hugs,

Frankie

Never That Easy said...

Jo - Thanks for the update: I do wish you had better news to report, but it also sounds like you're getting a handle on all the news you do have.

I'm sorry you're feeling so worn out right now... May next year be ever so much better.

Katie said...

Well now - here's a big ol' smoochy woochy and hug to go with it. Glad your Christmas was so good. How the heck did you manage to get them not to fight? You are indeed the master!

much love as always. - K

Jonzie said...

I' glad you had a nice Christmas, Not so glad about the news. At least the tiredness will fade away. That should give you a good kick.
Keep it up!

Summer said...

Oh Jo, I've been checking back and wiating for an update. I'm glad your Christmas went well. (((HUGS))) Always keeping you in my thoughts!

branwyn aka madhouse mauly said...

i love you mama. im not on amitys anymore but will be keeping up with your blog. also i shoudl be getting a car this spring and i will be doing some road trips (its gonna happen). i dont suppose you might want an overnight guest???

JaniceNW said...

You got food poisoning from giardia? According to my brand new micro book giardia is a parasitic infection caused by protozoas found in less clean water.

No chemo or radation? Is this because your immune system is compromised by not having a thyroid or incomplete adrenals?

I am so sorry honey. I wish I could do something! Love you and praying for you.

MAJOR HUGGLES for you!

Episcopollyanna said...

I just happened upon your blog by following someone else's links. I'm so sorry to read this. I'm a two-time cancer survivor myself and yes, it does indeed suck. Sounds like you're in good hands, though.

I'm keeping you in my prayers.

Life As I Know It said...

Hugs to you.

Many cyber thoughts are with you!

Homemom3 said...

Jo- Glad to hear from ya again. Been missing you but understand. Hopefully things will start going your way with the new year. Glad you got some good news and a great Christmas. (((HUGS)))

JafaBrit's Art said...

ugh, seems like you have a good excuse for not posting so much, although I wish you didn't have such an excuse. You have quite a fight on your hands for the upcoming year, may it be helped with love and support.
Sending my thoughts your way
corrine

Gwen said...

No lost reader here. I'll admit I got a little bit excited when I saw one of your docs is in STL. Hee-hee. I wish you were coming to visit for better reasons but I would love to meet you face to face. I'll bring you flowers or something. Do let me know if/when you'll be in town. Many nice amity mamas here :o).

Christy said...

I luv you Jo!! You are the bravest woman I know!

Take it easy, and do what you can, you many not be able to post a lot, but when you do post, your way with words is amazing! You are a great writer.

I hope you have a fun night tonight, and a Happy New Year.

Big Hugs Buddy:):):)

Karen said...

(((HUGS))) to you! Please let me know if you pass through the OKC area on any of your trips, and I do hope it all turns out with the best possible outcomes! We've just returned from out of town, so I am buried in laundry, but hope to get a post up tonight or tomorrow as well. Hope you get plenty of rest!

A Little Revolution said...

;p
Happy New Year! Yes, it is sad that I'm blogging tonight. The baby is sick, so my wife went to our friend's party while I take care of a sick baby. She owes me!

wool food mama said...

Hi Jo. Just wanted to let you know I'm loving on you from here. ((hugs))

Katie

Rick said...

My wife has just finished 2.5 years of cancer treatments - I've learned more about cancer than I ever wanted to know. I now know that as you describe your situation that it is very serious. I am sorry. I have a few cartoons on my blog that I drew related to cancer stuff - don't know - you might find them enjoyable. Just the same, I am having a give-away there for two prizes - you might like to sign up.

Dawn D. Lion said...

Hey there! Just wanted to send you my best thoughts and prayers. ((((hugs)))),
Dawn aka Brooken from AW

Andrew said...

Jo,

I feel horrible that I haven't read or responded to this sooner. Ugh. What a wonderful way to end the year, huh? Thanks for the very thorough update. I'll let you use this month to rest up, get results, hopefully get some succesfull surgery done, rest more and then come Feb you can start cussing and yelling at me again.

I'm glad you had a great Christmas though with no arguing. Just spending quality time with the family can be the greatest gift of all, right? Well, except for a new Xbox 360 that is...

Feel good!

Rayne said...

This so does not sound like fun. I'm sitting here trying to come up with something appropriate to say that hasn't already been said and honestly, all I can come up with is "I'm glad you had a good Christmas." How lame is that?
All of the operations do sound very scary and I hope and pray that everything goes by the book and your recovery is easy.

Heather said...

This is my first time at your blog. I am also 32 and have 3 kids and I can't imagine how hard it must be throwing cancer into the mix. You sound very strong and together and I wish you well.

akaphotography said...

Hey Jo this is Nickie (mamakabam) from MD could you check your e-mail I am sending you something :)

Robin said...

Just popping in to say hi and see how your New Year has treated you so far.

Much love,
Robin

Jenny-up the hill said...

So glad to hear an update..all the good, the bad and the ugly! You are a super-strong woman and I just know you will do well through all of this. Of course, you're always in my prayers and will continue to be, friend. Hugs!

A Little Revolution said...

Just saying hey Jo!

Jo said...

Thank you to all of you for the comments. I tried to send emails to those who had an email show up with their comment (in my mail) but to those who didn't, I appreciate your support and comments very much. It means alot knowing that people are still interested after all this time.

You are all wonderful friends and I don't know what I'd do without you.

Medias said...

I hope that you're feeling rested very soon.

Especially Heather said...

Praying for you and thinking of you. I am a fellow cancer survivor (brain cancer) and just recently heard about your diagnosis.

There are so many blessings hidden in the diagnosis of cancer, you just have to look really really hard to see them, it isn't all doom and gloom :) (I know you know this)

Keeping you in my prayers,
Heather

radioactive girl said...

I feel for you. I had thyroid cancer and am still following up on things. I just had pneumonia that might not have been pneumonia, but instead a spreading of the cancer. I'll find out at the end of the month when I go back for another scan. This cancer thing is certainly not fun. Good luck!