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I hate to share this news....

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

I guess the great news is that my lung mets looks to be in remission.  Unfortunately, I have had other problems that I hate to share (sometimes lately I feel like Debbie Downer), but I know I should be honest with you guys.

Recently, my dentist examined a small ulcer over my mandible that I showed him.  He is pretty sure this is early osteonecrosis of the jaw (associated with bisphosphonates like zometa or xgeva).  I am depressed because I have been meticulous with dental hygiene and dental checkups.  Maybe it was caused in part from the chemo or from being on cancer dose zometa or xgeva for nearly 5 years.  I am not sure.  The condition is not curable and difficult to treat.  I see an oral surgeon tomorrow and I will keep you all posted.  The ulcer has now been there about 5-6 weeks and is not getting better.  It doesn't often hurt, so I guess that is one positive thing.

Also, after a lengthy discussion with my oncologist, I have taken disability leave from work.  This is the hardest decision that I have ever had to make and I have cried buckets and buckets over it.  I love my career and I love my coworkers--most of all I love my babies (most of you know that I am a neonatal nurse practitioner).  I have worked the entire time--since I was first diagnosed in 1987 and have felt that I would never stop.  When I began to have mets symptoms in 2005 (ribs and lung), I was still able to work until this year.

But it is not fair to my coworkers, my babies or myself to work in my present health.  The liver mets and chemo have really hit me (like a mack truck). It made me cry even harder that both work and SS approved my disability right away--what they think I'm sick?!  Lol. 

I had lunch this past week with a dear friend and coworker.  We have worked together in the same field for 29 years.  We both cried, but she told me to ENJOY my leave.  That was a concept I had not considered--I was too busy being down about the decision and its implications.

Well, I am going to try.  My older sister is coming from Seattle to visit me in November.  My little sister is coming from San Diego with my 21 yr old nephew in December.  We will have fun even if we just hang out together!  I am determined to enjoy this forced rest and to move forward with my life!

I hate sharing cruddy news, but I know that it is part of my journey.  Thank you for all of the support.

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

Sorry, should have said that it looks like the liver (not lung) mets is in remission.  Definitely chemo brain...Lol.

disneyfan2008
Posts: 5259
Joined: Oct 2010

Sorry to hear...but you must do what is best for you! NICE you have family coming.

Denise

fauxma's picture
fauxma
Posts: 3531
Joined: Dec 2008

Sorry to hear this news.   I think it is hard to be "forced" to make this decision. Yes, there will be some good things about it.  I am sure there are many things that you have wanted to do but didn't have time for but it doesn't blunt the pain in knowing why you are no longer working or that it was not your choice.  Den was laid off at the age of 71 and it was devastating for him.  Then came his heart attack, stroke, broken hip and c-diff infection he has had quite a time with "his retirement".    Our golden years are not exactly what we had mapped out but we are together and right now we are both doing well and I am grateful for what we have.   I miss working, although my job was not as rewarding as yours.  Working gave me a sense of purpose and I have worked since I was 16 years old.  But I love my time with Den and the grandkids and our daughter and son in law.  Happy to hear that SS was so quick.  That is one problem so many have had here.   I have so much admiration for you and how you have dealt with this disease and I know you will adjust to this as well.  If I know you at all, you will find wonderful things to fill your time.  I just know that your co-workers will be missing you so much.  If you are half the woman at work that you are here then you were totally awesome.  Enjoy the visits with family and enjoy this time to build your strength and continue to live life to its fullest.  

Hoping the ulcer can be treated and that you continue to get good news about your mets.  My prayers and good thoughts are with you.

Stef

SIROD's picture
SIROD
Posts: 2116
Joined: Jun 2010

I share you pain, CC.  I know the feeling of leaving a job one loves.

I am also undergoing teeth problem, though yours is more serious.

Sending you positive thoughts and you will get through this.....

Hugs,

Doris

sandra4611's picture
sandra4611
Posts: 121
Joined: Sep 2013

Well that sucks doesn't it? After all you've been through and are faced with, to learn you must give up your job is the proverbial straw that broke the camel's back. Cry buckets, girl, we understand. Sometimes having a job is a way to take your mind off of your own situation, and, with your career, knowing how much good you are doing for those babies is enough to make you get up and go to work even when you feel bad.

I had a moderate brain stem stroke earlier this year.  I'm an accountant. I also am a group fitness instructor (Pilates & Zumba) plus my husband and I teach ballroom dance. For many years I've worked all day, changed clothes and headed for the gym to teach two classes. We taught dance on Friday evenings and I was back at the gym every Saturday a.m. for two more classes. I loved my job - all 4 of them - and loved my busy life but had to quit "cold turkey." Losing everything was awful. I cried buckets too. I felt like I had lost my identity and purpose in life and was suddenly "just a sick person" that people would feel sorry for. Some friends began to pull away.

Since I had to apply for social security early (I'm 64) my benefits were permanently reduced. With a 28 year old mentally ill son, the financial burden became huge. My husband has been retired for five years. We've relied heavily on my income. Now "poof" it's gone. My doctors also discovered a large aneurysm in the ascending aorta of my heart...the same thing that killed by grandfather & uncle. Plans were underway for open heart surgery within a couple of months. Two months into stroke rehab, I had my regular screening mammogram and was diagnosed with breast cancer. Three life threatening things within 6 months? Seriously? God and I were no longer on speaking terms.

I was buried in depression and found myself wondering why I was fighting so hard. I could have another stroke tomorrow or the aneurysm could burst...now breast cancer. Maybe I should just toss myself down the stairs and save everyone the trouble and expense of dealing with me. Fortunately one of my doctors saw that I needed help and referred me to a mental health counselor. She has been wonderful and has made all the difference in my 180 degree (ok maybe 120 degree some days) change of attitude. I hope you have someone you can talk to as well. Give yourself permission to grieve over the loss of your job. Others might think it's silly. The heck with them.

I'm 5 weeks out from a double mastectomy and 3 weeks out from a second operation due to infection and necrosis. Bradycardia almost got me, but I made it through both surgeries without a stroke. Since I'm allergic to narcotics (I've coded 4 times) I can only take Tylenol, but the pain hasn't been bad and I'm healing fine. I meet with the oncologist next week to see what's next. Hopefully they "got it all" since they found the cancer early. I'm reasonably happy and optimistic that I will be around for awhile, but who knows? My husband has been fabulous and with my therapists help, we are focusing on a 2014 trip to Alaska instead on dwelling what COULD happen instead.

Good luck to you as you navigate through these new challenges.  

 

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

Sorry to hear of your journey so far.  Certainly sounds like a lot to handle.  Sometimes I wonder if we really are given what we can handle - your challenges seem excessive. 

Someone is usually online most of the time, so I hope we can offer you support and information if you need it.

Hugs,

Suzanne

Clementine_P's picture
Clementine_P
Posts: 360
Joined: Feb 2011

So sorry Cynthia.  Knowing how much you love your job I am sure this is really upsetting.  Still, knowing you I am quite sure that you will live every minute of your forced rest to the fullest and end up feeling really positive about it.  Give yourself some time to feel sad about this and then allow yourself to rest. 

Best,

Clementine

New Flower
Posts: 3917
Joined: Aug 2009

pleasenews please do not feel responsible for side effects of Chemo drugs you did everything what was in your power and have been on it for long 5 years. I hope your consultation will be fruitful giving you chance to feel optimistic agai

i am sorry that you have to leave your work, however when you feel strong enough I am sure they will be happy to take you back part-time or full-time. You undergone very extensive treatment and need to recover completely. Plus what is about wedding? You will be busy arranging it

I thugs and let us know about your appointment

hugs

CypressCynthia's picture
CypressCynthia
Posts: 3873
Joined: Oct 2009

Thank you all for the kind responses.  It is time for counseling.   I have been battling a real funk with this chemo go-round and need some more help. 

We upped my lexapro, but I do believe this is grief as much as depression, but maybe it is time to seek some additional resources.  But I may be a whiny, weepy pain the butt for awhile, so please bear with me.

The wedding is proceeding and will be in April 2014.  We are going this weekend to meet with a florist and taste cakes.  Since my taste buds have mostly returned that should be fun.  My physician has agreed to have his jazz band play and is barely charging me anything.  He says he is giving me the patient rate, but I know he is just being kind.  His band is awesome and they have played at the N.O. Jazz Fest many times.  I can't wait to hear them!  We are taking a bit of a risk and having the wedding and reception in City Park's botannical area.  A light rain would be ok, but a driving rain might get messy...Lol.  I know you guys will have our backs and it will all work out!

Double Whammy's picture
Double Whammy
Posts: 2259
Joined: Jun 2010

So sorry, Eileen, that you've reached this point.  Hope counseling helps you get over the bumps.  How difficult it must be to give up a career that has defined so much of you.  There is nothing anyone can say to make this better.  It's just painful.   

Come to us and be as weepy, whiny, and whimpy as you need to be.  We will be your supplemental therapy. 

And, of course, keep us informed.  Sounds like the wedding is moving along and will be a wonderful event.  We will keep the rain away for the event.

Suzanne

lintx's picture
lintx
Posts: 456
Joined: Sep 2012

 

Not all of it is so cruddy!  I'm excited for you to have free time to plan and enjoy events leading to the wedding.  We definitely won't allow rain on the big daySmile  Now you have time for company and can be someone's company next time.  It is the opportunity to relax a little and just slow the pace.  Hugs, Linda

camul's picture
camul
Posts: 2004
Joined: Dec 2010

Glad you are going to talk to someone. Sometimes it is so much easier to work through some of the losses (grieving), with someone not so close. So glad that you have family visits to look forward to and hope that you will feel well enough to enjoy all the new ventures in front of you.
Probably the hardest part of this nasty disease is how much it takes from us and sometimes no matter how hard we try to stay positive, we all can use a little help.
Sending prayers and hugs,
Carol

grannabeth
Posts: 89
Joined: Apr 2013

CC, I am so sorry that you had to share this news.  We know that you have totally enjoyed your work. But you have been through so much, and it is time for you to take some much needed rest.  And as others have said, you will make the best of it and you have a lovely wedding to plan.  Enjoy this time with family.  I pray that your situation with your jaw will be treatable and we are all pulling for you.  Take some time to grieve for the temporary loss of your job and we hope that you do find a great counselor to help with the emotions of all of this.

Grannabeth

Josie21
Posts: 337
Joined: Nov 2012

Hi CC,

I am so sorry to hear this news.  Is there any way you can stay connected to your work by volunteering at the hospital when you feel up to it?  My neighbor is a nurse practitioner and she just started doing it.  I know that nothing can compare to your job, but maybe it can help just a little bit.  i hope you enjoy your leave and the time with your family.  You are an amazing lady CC.  I know you have an amazing journey in front of you.  Once a nurse, always a nurse.  You can share yourself in other ways.

Hugs to you,

Ginny

Cricket64
Posts: 63
Joined: Sep 2013

Pretty new to CSN, but I am under the impression that this is the place to not only share our joys and success, but our heart breaks too.  So, as someone else said, when you need to VENT, someone is normally on line.

As this new stage of your live unfolds, may you fine some hidden treasures along the way.

 

aisling8's picture
aisling8
Posts: 1247
Joined: Feb 2010

The osteonecrosis would be enough to send me into a puddle of misery and fear, but to also have to make decisions about a career I love being on hold, whew, I'd be a mess.

Please continue to let us know your reality. When others express their true feelings, it helps me to know I'm not alone when I have really big emotions about various things.

I'm glad you have a wedding to think about -- it provides a little bit of balance to go along with the other stuff on your plate right now.

Sending a big hug and some California sunshine and salty sea air your way:)

xoxo

Victoria

roseann4
Posts: 994
Joined: Sep 2009

Now is your time.  Take a class you always wanted to take Or pick up a new hobby.  You can volunteer to rock babies who are born addicted Or get involved in another way.  Live and enjoy!  You deserve it.  There is lots of evidence that happy people live longer.  I wish you happiness and joy on this new adventure.  Thankfully you have disability insurance!

roseann

sea60's picture
sea60
Posts: 2601
Joined: May 2010

about the condition you are facing. I pray that it begins to heal. And I agree with Roseann, you will grieve over the life you've had for so long, but there are new opportunities you will discover and find joy in. Enjoy family and travels. I love nurse practitioners...thank you for such a selfless job you have given to so many!

 

Hugs,

 

Sylvia

VickiSam's picture
VickiSam
Posts: 8220
Joined: Aug 2009

I am sorry to hear this unpleasant news and new issues with your mouth ...   I am delighted by the remission news - by all accounts we all should be jumping for joy -- and smiling. 

Sadness fills my heart knowing that you had to take a leave from your job -   i know in my heart and soul that you will return to those infants, and staff that adore and love you.

 

Gentle hugs, xoxoxoxo

Vicki Sam

 

coco2008's picture
coco2008
Posts: 406
Joined: May 2013

CC, sorry to hear of this newest hurtle on your journey.

My heart and prayers are with you.

Sandy

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