Monday, December 29, 2008

Hellooooo...2 am anyone out there?

Okay...here it is 2 am and we all know when you see a post at 2 am that means I am up thinking...not always such a great idea in the middle of the night. You would think since I know that I would just not do it. But as we all know these type of middle of the night times seem to not listen to reason....so here I am.
Tomorrow is my PET scan. Finally. I know it seems like forever but in reality with the operation and then the follow up issues and the holidays...it has not really been that long. BUT it sure seems like it. Yet here we are and I find myself thinking....can we wait one more day. Nah...not really. But a little part of me thinks of this PET scan like a person who thinks..heck if I do not take the PG test then I really can not be PG , right? Speaking of PG...I wish that were my issue instead of this issue. I mean no I do not want to be PG while I am having these issues..( note I am not using the word sick..I feel a dread when I hear myself say the words "while I am sick") so I use the words "these issues". Just thought I needed to share that with all of you. Back to the whole PG and testing thing...I KNOW we need to know. I want to know. But there is a part of me that worries to know. Ya know? The pet scan will be looking at the body as a whole..But as you may recall they found nodules on my chest wall/lungs as a fluke while doing my scan on my neck. So that is what scares me...I know there is something there already. Is this making sense? Ya know it is 2:15 am and I did take a so needed pain pill. Can I just say my neck hurts tonight...OUCH. Okay there I said it.
So for some medical info. Yes I know the blood thing could of been worse. Heck all of this could be worse....but in reality it stinks. I have been stuck everyday for two weeks. They did stick me the 4 times last week for the oncology appt. But I did need tons of blood work done. What happened was..the blood would clot and we would end up not being able to use the sample. They had to use a certain needle due to my veins being bad last week. The worse is when they say..we are going to try in a vein in your elbow...YUCK and OMG ...are you serious? I am sure we will be talking about a central line when the time comes. Philip has had many of those..and while I hated the idea of him needing one..I grew to love him having one for his meds and blood work.
There were many things that came out of my oncology appt but I thought I would touch on a few of them tonight.
First and really important was the fact that the oncologist is a angel sent from Heaven. She is young and has 4 kids...and I can talk to her like I would any one of you. She is just "normal". I love normal right now.
It is very clear I have a serious autoimmune issue going on. While I was PG it was found that I have anticardiolipin and also Lupus anticoagulant. These had to be treated with steroids and a blood thinner. After knowing this and looking at my records the Oncologist ordered some very sensitive testing to be done. It was explained to me that a autoimmune issue such as mine can be very serious and cause the body to turn on itself. She explained it that the body fights itself and attacks the cells and organs. The type she is leaning towards for me is hard to treat and very dangerous. She said we would NEED to get it under control while we are treating the cancer. Because if we do not ...and we get rid of the cancer..it will not stay away. It is a dual issue. My first treatment for it is a high dose steroid treatment. It will need to be a higher dose and hard core due to me having steroids with my PG from 15 weeks thru delivery. As she talked about the steroid treatments she asked how my marriage was and if my DH was supportive. Humm...I guess she is setting up how hard all this could be. LOL. But we will do it..we will..we will..repeat after me..WE WILL...right?
Next...I had a certain test done that came back elevated. It is now being done for a DNA testing...something I would never of really done. Not that I am against it...I just would rather of not known. But now I will know. With this info comes a price..the price is..what to do with the info. It was clear from her that IF these test came back elevated we would need to proceed with a double mastectomy . Needless to say that was hard to hear. One issue is...I have a lump found on the left breast on mammogram and a follow up ultrasound. We had planned to do a MRI of the breast..but after the original first stage of the DNA testing she said wait because we may end up just having to remove the breast. My mind said WHAT are you talking about..My heart said...Dear God...NO . But my reality says..whatever it takes. The reality part is said in a whisper. But I will do whatever it takes. I just hope it does not take that. Okay let me rephrase that...I will pray it does not come to that...and if it does..then help me know it is a clear path answer and the right thing to do. I do know that this is the second oncologist who has said this..so I feel pretty satisfied this would be the right path to take IF the test is abnormally high.
One last issue...I think I mentioned I had the infection on my face. They took cultures . The results were sent to my Dr and she called me Wed to explain what they were and what it meant. The bottom line is..it is a odd , weird and scary infection. I am pretty sure I got it while in the hospital. I have been on antibiotics for 10 days not to treat it. I have been done for 2 days. I now have 6 spots vs the two spots. I will be calling in the morning to see what we need to do. I know it sounds vain..but I hate to have it on my face and I hate to wear the bandages on my face. Can't a girl just have a place to put some lip gloss? So I will get to the bottom of what we need to do tomorrow. I worry a little cause one is by my eye...Not wanting that...ya know?
I would like to share how blessed and thankful I am ....Christmas eve I was so sick. I threw up all day and no matter what I did , including ZPhron I could not stop being sick and not get my pain under control. I made myself pull my head out of the toilet and fake it till I made it. We ended up having a nice Christmas eve at my inlaws. It was really important to me to make sure the kids had a nice time..and they did. Something about kids on Christmas ever is magical.
I know I have rambled tonight. I just had things I wanted to share and I dumped it out here. If I did not have to be up in a few hours I would go back and work on this post more...but at 2:50 am ...it is what it is...I have a feeling you all understand.
I am blown away with the cards and the sweet notes of encouragement. I would like to thank Anna who did not leave a address of a blog address. Anna your kindness was overwhelming. I am thankful and humbled. Thank You so much. There are many more I need to thank and I will in private emails during this week.Watch for my emails. But Miss Anna made it hard for me to do that with no contact info...lol. And I had to let her know how much she touched my heart. So all your sweet ladies who are sending me cards and messages . I LOVE them and I read everyone of them. I have the cards all over the house as a reminder..I am never alone. Thank You all.
I will be paying back the kindness by playing it forward...soon.
Okay 3 am and I guess I have rambled enough...sometimes I think I should hit delete when I do these type of post...but I won't. I have faith most of you will get where I am coming from, even at 3 am.
Thank You all for your support..I FEEL the prayers and the SUPPORT. I am so blessed by each of you.

28 comments:

Melissa said...

Wow, I thought I had a lot on my plate with my health...you make me look like a piker.

I hope they can get you some concrete answers soon and then make a plan to attack everything that is going on in your body.

You will be in my thoughts and prayers....(((hugs)))

Davisix said...

Oh Amy...I love you and will continue to pray. As I prayed on Christmas morning I thought so much about you and the tears started to flow. You are on my heart and mind Amy. xoxox Ang

annie kelleher said...

i will be thinking of you and praying that all turns out as you hope...

Charmaine said...

Good Morning! Yes, there are people up at 2 AM, why I don't know...craziness I tell you... LOL! Sending prayers that your PET scan will be better than you expect and that whatever it is, you will be able to hand it over to God to handle. Praying for your strength and understanding and for Jim's too. {{hugs}}

ixtapacheryl said...

Oh Amy .... my prayers are flowing your way big time.

I know what you mean about being up at all hours of the night. I would wake up and see Jeff sitting out on the lanai in the middle of the night - deep in thought. I guess it is natural.

I just wish I lived closer to you - I'd be right there to take you to the doctor and for your treatments.

You mentioned your doctor and how supportive she is. I think you definitely have to be a special breed to go into that field of work. Jeff's oncologist is a long haired motorcycle rider - and such a GREAT bedside manner. He could be telling you the worse news and the way he goes about it - you feel such peace. God Bless all of these caring doctors.

Lisa said...

I am so glad for that update, I am very concerned about you and want you to know you are in my prayers.

Florida Girl said...

Dear sweet Amy, I am at a loss of words. To say that I care & that I pray for you seems like such a typical thing to say. I wish I could offer my support in a more tangible way. But I do care about you, & I do pray, & I know God hears & answers prayer, even when it doesn't seem like He is there. You are such an amazing woman, so strong through all this. I admire you. Did you get my e-mail from some time ago? Check your spam box again =0) I'd like to come for a visit soon. It would be fun! Love, Jess

He And Me + 3 said...

I will be praying for you today constantly.
XO,
Mimi

April said...

Hi Amy,

Sorry I haven't checked in with you for awhile. We've been on the road and just got home. I'm sorry to hear that you're having to face some very frightening issues. Just know that you are surrounded by lots and lots of people who really care and are praying for you and your family! Anytime you need to vent...we're here for you! God Bless!

JANE said...

Hey Amy,

Isn't 2am a great time to just get it out there! I so feel for you! It just sounds so overwhelming to me and I'm sure it does at times to you. But from knowing what you've been through with Philip these years, you are up to the challenge, you've got the strength and God's got your back! And the rest of us are here to pray and cheer you on to win this race! It's always encouraging to hear from you, no matter what time it is! Prayers and Hugs!

Jane

Cassandra said...

I wasn't one of those up at 2am but I really wish I would have been so you could have vented to me! (That's what email is for right!) You know you are in my constant prayers! I pray you get some answers today & know where to go from here! Much love & hugs!!

Maggie R said...

Dear sweet Amy.... It's hard to write with tears in my eyes, but I can.... Your story tears my heart. I congratulate you for writing about your feelings, it helps , and please know prayers are flocking in..You have a strong will and it will keep you on top of all this...To add a light note, I didn't know what a PET was so I googled it.... now I know.. then the PG thingy... so I googled that I am assuming it is NOT Proctor and Gamble!!!!!!!!so I still don't know!!!!
Amy, Please know I pray every time I think of you and that is lots as i have a sticky note on my computer with your name on it :-}
There is so much power in prayer and you are on the top of my list...Bless you my dear and remember .....Let Go and Let God..
xoxo
((((hugs))))
Maggie waving from Southern Ontario, Canada where the tons of snow we had is gone and it had rained since Xmas..

Denise said...

I have no words of wisdom here, although I wish that I did. What you are facing must be terrifying but you are facing it with such strength and dignity even if you don't feel that you are.

I am praying that the day goes smoothly for you and that you not only get answers but get answers that you can deal with.

MomToEli said...

Sweet Amy - your voice sounds stronger every time I talk to you :) Remember - next year - you - me - sitting on the deck - sipping whatever - wow, wasn't this last year a doozey? {{Hugs}}

Amy Fichtner said...

I love your honesty posts. I don't know you but I bet that's one of your best qualities, you can express yourslf well. You don't come off as complaining at all, so don't worry about that. I will be praying for you as you as have your test done today.

Lisa said...

You are always in my thoughts and prayers... I hope you know that!! Hugs to you. Keep us posted and know that I am praying for your healing every day. *HUGS*

Vickie said...

I don't know you, but I think of you and your family often.

I hope that your issues get solved soon.

I am also up late blogging at times. One time I didn't go to bed until 4 in the morning. YIKES!

You are in my thoughts, take care.

{i}Post said...

As of today, I am not complaining with my health issues. They don't even compare. We love you and will continue to pray every day! Hang in there, girl!

liz said...

Amy, you're right, you will always find the strength to do what is needed. Praying for you. . .

bluesuede said...

Well, if it had been the night before, I would have been "out there." That was my night to be wide-eyed and unable to sleep.

One thing I love about this post is that I can see "my" Amy coming back. Although you still have "issues," (I almost used the "S" word) you are adjusting enough to talk about it, show your funny side, and show your determination to "stand up and fight" it -- no matter what it takes.

I hope you feel the love coming your way ...

Gran to Angels said...

I agree....I see my Amy coming back in your writing! Rolling up your sleves and getting ready to kick some butt! That a girl!!
Prayers without ceasing....
love without ceasing.....
hope without ceasing....

Andrea said...

Amy,
In case you wake up tonight to blog, just want you to know that I'm praying for you in Southern Ca. You are strong Amy and your strength continues to grow each day. Find anything that can make you smile or laugh during these difficult, and uncertain times. It is amazing the healing powers of laughter. My husband Fred was diagnosed with organ involved Lupus right after our first son Andrew , 8 years old was born. Steroids really knocked it under control and now he just takes plaquenil. It is frightening to deal with Autoimmune diseases but I know you are strong enough to beat it at its own game. You will beat both of these ugly diseases attacking you right now. You will have an amazing testimony to share. You are not alone. Us moms and friend bloggers are all praying for you and your family. Try and get some sleep.

misty said...

Amy, you are in my heart and on my mind.Continued prayers for you and your family.Your strength and determination constantly amazes me, you are so special! I know you may not see it that way, but those qualities shine through, and you will get through this...we will be with you all the way! God bless!

Betty said...

Hi Amy
I felt compelled to get my own gmail account so I could follow along and pray for you as you go on this journey. You are a very strong women, and your faith WILL sustain you. I have and will continue to lift you and your family up. Blessings and Peace. Betty

Shannon said...

Feel free to "dump" on us anytime. We're all here to listen and praying for you!

Julia said...

I have to admit to have been a little daunted at starting your post, but since I am a notoriously long poster I had to read your story. Now I am thankful for my health. I realize there are others out there struggling with many issues but it just does not strike me as strongly until I read it first hand from someone like you. I am hoping and praying things go well with this next year for you.

I live...therefore I consume. said...

Amy, you are such a strong and amazing woman. You are so eloquent even at 3AM. My prayers are with you & your family. Your courage inspires me and reminds me of how blessed I am. Thank you for sharing your journey with us.

-Tamara

Magicsmom said...

Amy, my heart aches to hear about all your issues. Your strength and resolve to do whatever it takes is amazing! Your courage in the face of this is an example to your family and friends, of which I am happy to be one. I love you dearly.