21 replies to this topic

[wallystl]

Hi all.  Just checking in, need to vent.

2+ years into DX, on trial drug. Battling extreme fatigue, always have had fatigue with Gleevec, Sprycel so on.  I've been run out of the real estate business as well as another startup due to the poor economy.  I've run out of my savings and its time to try and work again, I'm divorcing & have sole custody of a high school junior.  I was lucky enough to grab a great sales position. I'm extremely grateful for an opportunity while so many are unemployed.  That said, for the 1st time in my life I'm really afraid to try this new deal.  Seems CML and its other lifestyle altering issues have zapped my confidence.  Mostly I'm fearing I won't be physically able to do the job & I don't intend to disclose my CML to the new boss.  I require huge amounts of sleep.  So, I know you all understand and I know many here are facing much more difficult issues, for that I'm sorry.  Just wanted to put my fears into words.  Thanks for reading.

[mikefromillinois]

Hi Wally,

Just wanted to throw a little support your way.  Best of luck with the new situation.  Hang in there and stay well...

Mike

[janner25]

Hi - I completely know where you are coming from.  I work - part time - with an office inside my home.  There are rumors of job layoffs (and have been for a few months) and I'm scared more than I am confident that 'I'll survive the cuts'!  I think to myself...where am I going to go...make the money I do - working part time - at home.  Physically I don't know if I could work outside the house - let alone full time!

All you can do is take 1 day at a time and sleep when you can!  You'll do great !

Janner

[pammartin]

Congratulations on the new position!  The scared comes with the CML, but moving and and getting back to work is exciting!  I am positive you will do fine, if possible pacing yourself and resting when you can should help.  This is a major accomplishment because moving on with this diagnosis can be difficult.

Thank you for sharing your awesome news, and the very best of luck to you.  Please keep posting so we know how your doing, your story is an encouragment to us newbies (and to everyone), and we see once again it is possible to lead full productive lives with this disorder.  

God Bless

Pam

[Susan61]

Hi Wally:  I wish you well, and it is a real mess with the Real Estate.  I totally understand what you  must have gone through.  Nobody is buying, and people are holding off to sell with this economy.  I hope you do well in your new position so you can get back on your feet.  The CML is an issue in itself, but everyone is going through these hard times with jobs.  They have cut back my husbands hours, and we are struggling also. Sounds like you have a full plate right now with everything else besides trying to work with the fatigue.  Try to just take one day at at a time.  If you cannot do it, then try for Disability for now.

Let us know how your doing.  IT can help others in the same position.

Susan

[Marnie]

Good luck.  You can do it.  You are wise to keep your information private for now.  Later on, you might change your mind, but that's in the future.  Take care of yourself and you'll do fine!

Marnie

[teb]

good luck with your new position.I can only imagine how nervous you are with CML but the most you can do is try for you and your family. I too am going through very difficult decisions. I've been at a company for 25 years. DX in May 2010 and started on tasgina now gleevec. I have had many set backs. I work part time 3 days a week. Before DX i went into the city 1 day a week and the other days from home. Since DX they have allowed me to work all 3 from home. I don't know how i would be able to got to work i have more bad days then good fatigue, swollen eyes, rashes, mouth issues, etc. My company just split and by 2012 if will be 2 companies. I need some advice? With my at home work situation i didn't need to go on disability but with all the changes will have to probably go back 3 days in office if not full time. I am terrified. I have always worked but I can't ever imagine commuting into the city 3 or more days. I wouldn't have any quality of life. Even at this point i don't even know if my dr at MSKCC would put me on disability. She is work through it attitude! I am scared financially and not sure how to proceed with work/short term or long term disability. Has anyone else had to face this work issue since there DX.

[Susan61]

Hi Teb:  You say going into the city.  I guess you mean New York City.  I wish I could find something I could do from home.  I did have to leave my job when I was diagnosed because I am going back to 1998 when I was diagnosed and I had to do the shots of Interferon everyday.  I worked for the Oncologist who found my CML very early.  I tryed to work, but I was around sick people constantly in a office of 8 Specialists with a extreme heavy workload.  I was running fevers, and felt like I had weights in my legs 24/7.  He finally put me out on Disability, and then for the next year or so I was trying to stay stable because the Interferon did not work for me.  They also added a shot of Ara-C every 2 weeks to my regular regimen of Interferon.  I was very sick.  Then we started to travel into New York every 4 weeks for me to be in the clinical trial for the Gleevec, after numerous visits to a bunch of BMT specialists who were trying to find a unrelated donor for me.  I stuck with the Gleevec, and have been happy with my decision.  Depending on what is going on with you, will determine if you can qualify for the Disability.  I developed other problems which just made my dealing with CML worse.  I did have to fight for the Disability, as I was denied at first.

I can only imagine the stress you would be putting on your body if you had to travel into work each day.  I know how wiped out I was when we went back and forth from N.J. by train for my clinical trial.  We did it the whole winter of 2000.  My husband used to take off work on the days that we had to go into the city, and it made the fatigue worse along with worsening joint pain from all the cold and snow.  We still talk about those days every now and then.

I wish you well in whatever you end up doing.  This economy is making decision making even worse for everyone these days.

Susan

[random]

Wally, you're not alone. God with you.

[Janine]

Wally,

Best of luck with your new job, I know it's tough.  I started a new job about 2 months ago and decided not to tell my new boss.  I'm happy with that decision.  Take care, Janine

[wallystl]

OK, I'm home from my 1st day at my new job.  1st. thanks to everyone for their comments and encouragement.  So, I'm exhausted but really glad that I took the chance with this new opportunity.  In was up & down all night playing all of those tapes in my head; you are crazy for doing this, It'll never work, you are going to embarrass yourself, don't go.....well I got up ay 5:00 A.M., got Jon off to school,  packed lunch, snacks, coffee, uppers, water and off I went.

The people I work with are great.  All different types of folks.  Race, background, education, experience so on.  Everyone went way out of their way to say hello, offer their help.  I did really well until about 2:00 when I crashed.  Eyes red & burning, sleepy, nervous, hungry.  I slugged some coffee & an upper and told everyone my eyes were bleeding from allergies & a cold.  They bought it and I kept going.  I made it till 6:00 and raced home for snacks & a nap.

I must say that my self esteem is much higher tonight after actually working this job for 1 day than its probably been in 2 years.  I feel like I really did something.  Sure, I'm shot and will need 10 hours of sleep to get up tomorrow and go for my 90 day BMB, but I think I can kick its ass again tomorrow and go back to my new job on Thursday.

More later, good night. Elton John on the radio, Blue Jean Baby....not so bad here tonight.

[lala]

Good for you!!!!!!  Sounds like a good day!!!!!  Keep moving forward!!!!!!  Rest when you can......happy to hear how you summed up your day!  Plan on resting all weekend......lots of us need to do that!  Sounds like you are feeling proud......keep going!  ~Lala

[Trey]

Going to bed hearing "Blue Jean Baby" is good as long as you don't wake up at 6 AM to Cher singing "I've Got You, Babe".

* For the British Commonwealth folks, that is a reference to the movie Ground Hog Day

http://www.youtube.c...h?v=I7NHCy13ZLk

[Marnie]

Congrats!!  Glad that all went well.  I'm sure that you'll have some ups and downs, but it sounds like you've got the stuff to hang in there.  Once you get the job figured out and a routine going it will be smooth sailing.  All the best. . .

Marnie

[GerryL]

~ I was in the Virgin Islands once. I met a girl. We ate lobster, drank Pina Coladas. At sunset we made love like sea otters. That was a pretty good day. Why couldn't I get that day over and over and over. -  Phil Connors

Wally

Congratulations on your great first day, may there be many more to follow.

[Pin]

Is it too early for flapjacks?

[PhilB]

Congratulations Wally.  I hope it all continues to go well.  The real challenge is getting so you really believe you can make it through the day okay, even on a bad day - and it takes a few times of struggling through to get to that stage!  Hopefully the more you go in, the easier it becomes, the less you worry, the better you sleep, the easier it becomes, etc.

And Trey, even in the Commonwealth we now have those magic taliking-picture-box things.

Phil

[grannyd]

Congrats Wally on your first day!!! May you continue to do well, lots of people behind you here!!! granny d

[Susan61]

Hi:  So glad all went well on the job today.  Take one day at a time. Sounds like you have a great bunch of co-workers.  Keep us posted.

Susan

[pammartin]

Congratulations!  May you have continued success with your job and career!

Pam