Author Topic: Infection is back - I am weary  (Read 30002 times)

another NY postie

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Re: Infection is back - I am weary
« Reply #45 on: December 17, 2009, 02:56:55 pm »
Kathy,
I read this at the beginning of this thread and then did not go on again until today.  I am in shock and so sorry to hear about your second whammy of a diagnosis.  I can only imagine what has been going through your head...enough is enough!  That being said, early detection is SO key in this and you did catch it early.  And the fact that you are not being medically "shuffled" around and that the doctors sound like they are COMPLETELY in your corner and ready to fight your fight all bodes well for you.  I am sending you many prayers as you go through this.  Know that you are not alone and are in many hearts right now.  Stay strong!
5 mm lateral IAC (impacted?) diagnosed 6-09-09
middle fosa 9/23 HEI - Brackmann/Schwartz
all tumor gone, facial perfect, no ringing
SSD on right side - Rockin' and Rollin'

Jim Scott

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Re: Infection is back - I am weary
« Reply #46 on: December 17, 2009, 03:34:47 pm »
Kathy ~

Your latest update is, indeed, positive.  Having such a professional, experienced medical team working with you and for you is very reassuring.  I think you're going to be O.K. but of course, not as quickly as you would prefer.  So many good people are rooting (and praying) for you that I know better days are definitely coming.  Hang in there - and thanks for keeping us updated.  I can assure you that it's much appreciated by all of your 'AN friends' here, including me.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tricia (horsekayak)

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Re: Infection is back - I am weary
« Reply #47 on: December 17, 2009, 07:00:03 pm »
I cannot think of anything to say other than what has already been so nicely said by others...I am thinking about you, pulling for you...this has to be hard, it goes without saying, i know.  You have so many many people here who are supporting you with thoughts and prayers
Tricia (horsekayak)-Diagnosed 8/10/09
1.5 cm right side AN
Gainesville, GA (near horses and Lake Lanier)
Linac radiosurgery at Shands Hospital/Univ of Florida  12/1/09  Go Gators!!!

"Excellence is to do a common thing in an uncommon way"...BT Washington

Goldie

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Re: Infection is back - I am weary
« Reply #48 on: December 19, 2009, 10:26:37 am »
Add me to your list of pray-ers!  It sounds like you're absolutely handling all of this correctly and you have a great support team.  I wish you didn't have to go through all of this, but I'll be praying for a great outcome for you.

Denise
GK 5/06 at Mayo for small AN after balance and slight hearing issues.  Progressive hearing loss following GK.
3/09 - facial spasms began.  MRI shows tumor growth.
9/09 - MRI shows further growth.  "GK failure."  Translab 10/1/09 success!  BAHA 10/8/10.

pjb

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Re: Infection is back - I am weary
« Reply #49 on: December 20, 2009, 07:04:42 pm »
Thank goodness some good news for you sounds like you will be in good hands you deserve it.

My prayers will be with you,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

Keri

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Re: Infection is back - I am weary
« Reply #50 on: December 27, 2009, 10:21:52 pm »
Kathy,
I'm so sorry about all you're going through and am thankful that you can see the upside of it, even though it' very difficult.
My prayers will be with you as well.
Keri
1.5 left side; hearing loss; translab scheduled for 1/29/09 at Univ of MD at Baltimore
My head feels weird!!

pjb

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Re: Infection is back - I am weary
« Reply #51 on: December 28, 2009, 06:41:48 pm »
I am just concerned how you are doing please let us know..

My thoughts and prayers are with you,

Pat
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.

lori67

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Re: Infection is back - I am weary
« Reply #52 on: December 28, 2009, 07:05:30 pm »
Hope all is well, Kathy.

Drop us a note when you get a chance.  We do tend to worry around here - and I know I don't need any more grey hair!!

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kathy M

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Re: Infection is back - I am weary
« Reply #53 on: December 31, 2009, 10:14:28 am »
Hi Guys! 

Well, after many appts and ups/downs associated with phasing out of work AGAIN and telling my friends & family, here's where I am right now (and I can't tell you how wonderful it was to read the most recent posts here and find that you guys were wondering how I am....hard to help feeling a bit lonely through all of this)...

The docs at OSU were not in agreement with my local oncology team - they are indeed concerned about the staph infection and the breast cancer surgeon does not agree that the area of malignancy is small (which this was very hard to hear).  The cancer specialists want the staph infection under control / treatment prior to the mastectomy.  So, after all parties talked (neurosurgeon in Cincinnati, and the infectious disease specialist and cancer surgeon  in Columbus) the plan is for surgery #4 to happen on January 5 in Cincinnati - my neurosurgeon will debried the wound, clean up all visible signs of infection, and remove all hardware / titanium to ensure that if any infection is tied to a reaction to any hardware, the sources are all gone).  I will have a PICC line inserted at this time and will begin receiving IV antibiotics.  They will transfer my care to the infectious disease specialist for the staph infection / PICC line who will be overseeing this phase of my care for staph infection. THEN....January 14th is the date of the mastectomy.  I meet with the cancer surgeon on the 12th to make certain I am ready for surgery and I'm assuming that he will remove any staples/sutures from my Jan 5 surgery so I won't have to drive back down to Cincinnati.  UGH...this is all so mindblowing for me - I never dreamed that a year after my first AN surgery, I would be staring at even scarier stuff.  Oh well, trying not to dwell and remind myself that life isn't about being fair.

My family doctor prescribed an antidepressant and another anti-anxiety drug in case I need them.  Right now, I don't feel that I do, but we'll see!  Once the cancer surgeon characterized my tumor as "large", I have struggled with keeping my chin up.  All these things are going through my mind like "Gee, how long has this been developing - why have the mammograms over the past 3 years noted "benign fibrocystic tissue" and now all of sudden, that same group of tissues are malignant?  Where else is the cancer now that it's been made known?  I am putting myself through the same ordeal as when my AN was first diagnosed - I am VERY aware of each and every ache / pain and possible association with cancer in other places!!  Maybe it's nothing, but what if it is something?  Won't know for a while and my logical side (while buried a little deeper of late, it is still there!) says that I can't do a darn thing about right now anyway, so girl - just be glad you are now aware, getting treated, and have a good group of folks to look after me.  In this case, ignorance is not bliss, right? 

So, right now, I am trying my level best to keep my fears in check, and get myself ready for 2010 and whatever that brings my way.  My husband and kids are fabulous - my inlaws and extended family on my husband's side are also a terrific source of support for me.  My own side of the family is in withdrawal mode (I saw my mother only 5 times in 2009 and she lives less than a mile from me - I know she loves me, but she just can't deal with other people's issues).  Although I knew what their reaction would be, it still smarts a bit - but hey, the last year was a good dress rehearsal for some heavier stuff, and for that, I am better prepared (and so is the rest of my support system!!).

I will work on Monday Jan 4th, trying to keep things as normal as I can for as long as I can.  Then, Tuesday morning, off to Cincy for the beginning of my 2010 adventure.  I would much prefer to have things a bit calmer, but that is not my choice.  I thank you guys for your care and concern...and count on you as part of my extended support team.  I'll continue to stay online as much as possible - my 2009 was easier because you were in it with me, and I will continue to lean on you guys in 2010.

Love to all of you and my wish for all of you is a new year filled with live, love, support, and lots of laughter.

Kathy
AN diagnosed 11/14/08, 3+cm, Retrosigmoid 1/13/09, Univ. Hosp., Cincinnati, Drs. Tew and Pensak
no facial nerve or eye issues!
3 more surgeries related to staph infections & osteomylitis over next 13 months.  New diagnosis of breast cancer.  Treatment completed 08/27/10.  Moving on!!!

leapyrtwins

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Re: Infection is back - I am weary
« Reply #54 on: December 31, 2009, 10:25:13 am »
Kathy -

I'm not a doctor, but it sounds like the game plan is a good one and you are in good hands.

I'm relieved to hear that you have such great support from your inlaws and husband's extended family - and then there's all of us  :)

Good luck with the surgeries on the 5th and on the 14th.  You're in my thoughts and prayers daily - and I'm positive others share in that with me.

You've been through so much lately, I hope things improve as the new year progresses.

Please keep us posted when you can.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

lori67

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Re: Infection is back - I am weary
« Reply #55 on: December 31, 2009, 11:29:51 am »
Kathy,

It's good to hear from you and I'm glad your medical team is working together towards getting you well.

While your AN Family can't help you medically, we are all definitely here for you to lean on as much as you need to.  We're all geared up to kick this cancer in the butt for you!   >:(  (don't we look scary?).

Please make sure you keep us posted.  I know you're in good hands and will have a good outcome and be able to put all this behind you.

Stay strong, my friend!
Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

wendysig

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Re: Infection is back - I am weary
« Reply #56 on: December 31, 2009, 12:11:06 pm »
Kathy,

You have been very much in my thoughts and prayers and you will remain there.  It sounds like your medical teams have a good plan of action and that you are in good hands.  I'm glad to hear that your husband and kids and his extended family are such a wonderful source of support and comfort.  We are here for you and you can lean on us as much as you need or want to.  Please let us know how you are doing when you are up to it.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

yardtick

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Re: Infection is back - I am weary
« Reply #57 on: December 31, 2009, 01:33:28 pm »
Kathy,

As we leave 2009 behind and begin 2010 you will be in my thoughts and prayers. 

Anne Marie
Sept 8/06 Translab
Post surgical headaches, hemifacial spasms and a scar neuroma. 
Our we having fun YET!!! 
Watch & Wait for more fun & games

CHD63

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Re: Infection is back - I am weary
« Reply #58 on: December 31, 2009, 05:01:54 pm »
Kathy .....

Thanks so much for sharing the events of recent days, as well as what is coming up in January.  Maybe in some small way, it is helpful to write it all down for a loving, caring, group of friends to see.  We all wish we could take away the distress you must be feeling through all of this.  Thank goodness you have a supportive husband and kids.  You are a strong woman and you will get through all of this and come out even stronger.

My thoughts and prayers for not only you, but your family and your doctors, as well.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Kaybo

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Re: Infection is back - I am weary
« Reply #59 on: December 31, 2009, 06:04:31 pm »
Kathy~
I echo everyone's comments - we are here for you - it doesn't seem like much but I hope you will let us know if there is ANYTHING we can do for you.  I feel so much better knowing that you have a strong support group there for you.  I'm sorry that your mom is not there for you, but at least you have your immediate family and your husband's family.  Sounds like the Dr's are working together with YOUR best interests in mind.  Please know that you are definitely in my thoughts and prayers!

Hugs & Squeezes to you,
Kay
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!