Sunday, January 4, 2009

Medical Tid Bits

I have been up all night in pain. It seems that as I heal I keep taking steps backwards. But after speaking with my surgeon, this is what is to be expected and considered normal for this type of operation. Okay let me just vent for a minute. I am over it. I am ready to feel better so I can work on getting better. The surgeon has explained to me in detail more then once just how complicated the operation was. And trust me I believe her. In many areas my healing has gone well. My scar looks much better then I would of thought it would. It still has a long way to go but so far I am impressed. But there are other areas that are just causing me major pain and slow healing. I have some nerve damage that has caused me pretty severe pain lately. I have a deep painful burn that goes up the left side of my face up to my eye and travels down to my upper chest area. The part that gets me most is...when it burns on my neck and face I always seem to reach to touch it..pat it to stop is just a habit that I NEED to stop. My face and chin have this awful numb marshmallow feeling that makes me sick EACH time I do it. Ya know when your dentist gives you the numbing shot? And as it is wearing off you have that gross feeling..that is what I have along with the burning every day now. Every time I touch it I get sick to my stomach. You would think I would learn...

The DR explained to me the nerve pattern and where my damage is. Our hope is that this is a temporary issue . Time will tell.

Along with this I am anxious for my incision to heal and stop hurting. The Dr was is going to be a long recovery. But I will recover. I will....I will....I will...I keep saying that many times a day. And so many of you remind me of that in my blog on my harder days.

I am still waiting for the PET report. The holidays have really played havoc on all my medical test reports. I can assure you...Christmas and New Year holidays win over any test reports...just ask my Doctors.

So without having the final report back from the PET scan I can only base my information on the neck path and blood work etc,
The form of cells that showed up in my pathology is treatable...very treatable. Thank God.
We are not out of the woods until the PET scan gets back but based upon the path report ..things are better then they could of been. With this being said I was reminded many times that this is a LONG recovery. But I like the fact that I am and will recover. While this is a hard issue to deal with...It is good news.
Now with respect to the breast lump. PET Scans are not good to help with the breast. I will be having a left breast MRI sometime next week. I also have about 2 weeks left for the BRAC test results. The Dr has made it clear that if that comes back abnormal we will do drastic surgery. Prayers for that test to be clear is so important. And of course if the MRI of the breast is bad we will follow up with whatever the DR decides.
We are still waiting on the PET to know more about the nodules of the chest and also to see if there is anything else going on in the neck or anywhere else.
We are still waiting to know what autoimmune disease I have that is wracking havoc on my body. As soon as the test results are all back we will know what it is and how to deal with it. The oncologist seems as if not more concern with this as she does the Cancer issues. I have full faith she will get to the bottom of what I have, how to treat it, and help me deal with it. What more can I ask for?
I think the biggest issue we have right now is a infection...a stubborn infection that is a worry to each Dr I am seeing. After four very strong antibiotics, by mouth and intramuscular. The infection is still here and keeps showing it ugly side.
Many of you may remember a few weeks ago I had a set back that lead to THIS. The infection seemed to clear up and then went crazy leading to this...

Notice anything odd? My face is having to be covered in the areas that the infection is flaring up.

Now here is some ...interesting or odd ..scary news. The same thing that grew from the culture of my face was in the tissue from my neck also.

The DR explained how the lymph nodes are a draining system for infection and goes on and on.

But not only does it cause this on my face. It causes me to be sick. Fevers and chills . The sores are painful . And the cleaning and bandage changes are hard. Plus I have been having major stomach issues due to the strong antibiotics. To be blunt it kind of stinks. Okay there I said it. It stinks and I am over it.

But due to this we will be dealing with a infections disease Dr this week . The oncologist spoke with him and filled him in on everything. She said we had to get this taken care of now. So I am looking forward to them figuring everything out. About the time I think everything on my face is cleared up it goes crazy. Call me vein but I hate the bandages on my face. More to come on that topic on NOT ME MONDAY.

I know I gave alot of details in here...maybe too many. As over whelming as it sounds in is just a course we are talking. And learning Patience. It ain't pretty but we will get the job done.
This too shall pass...Right?

So in summary...LOL ( that is what is on the bottom of my radioligy reports)
Waiting on PET results.
Will be having left breast MRI done
Waiting on BRAC test
Seeing ID DR for infection control
Cat scans every two weeks for follow up's

Plans to start the treatment of steroids to lower body fighting it's own cells are on hold until we get the infection cleared up because of the steroids lowering my body to fight the infection. Make sense? It did when the DR said it.

With all this being said..

I feel blessed that I am on my way to getting better. I have such faith that with time I will be feeling better and more in control of my path to getting well.

And while I wait for all that to happen..I am learning to be patient.

MY goals for this life lesson is learn harder on my new faith . Each of you who have sent cards and letter...visit my blog and leave the most inspiring comments..have shown me so much Grace. I FEEL the support and prayers. Some days that is the best medicine. Thank YOU ALL.


annie kelleher said...

you're very strong and i admire your faith, your courage and your humor. hang in there ... may you have healing in all forms asap!

Lisa said...

I can imagine that you are over and done with it and ready to start feeling better. Keeping you in my prayers that you will start feeling better and the test results will show some good news!!


Melissa said...

While my situation is different from yours I could have totally written this post.

I have traveled from one medical issue to another in the past year. The one thing I have learned is it's all in your attitude.

You have an awesome attitude. Remember to try and put some good stuff in between all of those doctor's and tests. Try something new.

And never forget you have a lot of people here that are willing to support you in anyway we can.


Aspiemom said...

I can't imagine all of the pain you are going through, let alone the numbness, marshmallowy feeling, the patches on your face, waiting on the test results.

I will be praying for you. Your faith seems to really be helping you!

Dawn said...

you remain in our prayers Amy. Blessings all around!

bluesuede said...

You said - "Plus I have been having major stomach issues due to the strong antibiotics. To be blunt it kind of stinks. Okay there I said it. It stinks and I am over it."

Now, let me understand this. Are the stomach issues the cause of the stink or is it the recovery process in general? (Feel free to tell me to leave my warped sense of humor at the door any time because I already know that you will!)

2BIG said...

Glad you are hanging in there. When yiou see the ID ask about probiotics for your intestines while on your antibiotics since you do not want a yeast infection to go with everything else.

I had nerve damage after an injury on the outside of my thigh that caused the numb skin sensation and the burning pain shooitng both directions so I can understand a bit of what you are feeling. Mine left after 6 months of healing. I hope yours does too.

Amy B said...

Great advice 2BIG...we are already following that advice.
I am taking probiotic pearls daily. I am also taking Diflucan pills by mouth every 3 days for a month .

Vickie said...

I continue to pray for you...Vern is also praying for you...if you knew my vern this would make you smile from ear to ear! {{{HUGS}}} to you my sweet friend

Hope said...

I wish I could hug you, God knows you need it. I'm sorry you're healing so slowly and I wish you felt better.

I do love your attitude!

WPMomOf2 (jen) said...

You are a strong women, I could never go through this! Prayers and hugs.

liz said...

I can't imagine how you must feel.
Prayers. . . prayers. . . prayers. . .they're all coming your way!!!!

Amy Dungan (Sparky's Girl) said...

I don't comment as much as I should, but I do read often and pray for you. Keep strong and vent when you need to. Healing has many directions it takes. ((HUGS))

Patrice said...

Wow this is a lot to deal with! I'm thinking of you & praying that your test results come back clear!

Davisix said...

Love you Amy! The girls and I talked about you this week. You are on all of our hearts and in our prayers. When you get to feeling better we will get together with you too. Girls night out! OK? Love you...Ang

JANE said...

You're right, lots of info but the path report sounded really good. I'm sticking with that!!
And I did want to say that is a lovely lip color you have on!
Hang strong friend!

misty said...

Oh Amy, hugs to you! You know you are in my heart and on my mind. Praying for you and your family,always.I hope you feel better soon and your pain gets relieved.I'm also praying you get good news on your test results.Hang in there...we are with you,girl!God bless!

Lisa said...

I am seeing a wonderful powerful attitude Amy. I am so proud of you being able to blog and want to.... that is terrific keeping us informed so that we can pray. Keep that good attitude, you are a Victor and not a victim.

Maggie R said...

Hi Amy...
I think your middle name is "Determination"....
You have what it takes to get through this... faith will guide you. My prayers are constanly with you..sending you love....

ixtapacheryl said...

Dear Amy: I know what you mean about nerve pain. Jeff had his 5-6-7- nerves compressed by the tumor at the base of his skull. The PT gal said that when he feels the pain (i.e. by his nose) to just put a little finger pressure on it to make it relax. He said that really helps. If you are having nerve spams - that's a very good sign. It means those nerves are regenerating. As much as you hate them and they make you sick - it's a VERY good sign.

Now regarding your scar at the neck - if it is healed ask your doctor if you can start using Mederma. It's made from onion skin and it's great at getting rid of it. I used it twice daily on my hysterecomy scar - and it's totally gone. Twice daily massage it into the scar. You can buy it at Walmart (cheaper than Walgreens). We used it a lot in Plastic Surgery after facelifts, etc.

By the way you are still beautiful - even with the bandages. Your healing can only get better from this point. Many prayers are being sent your way and I know God hears all of them.