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Scanxiety

onlytoday's picture
onlytoday
Posts: 608
Joined: Jun 2010

Hi All..

Well time for my testing and six month check up and of course I'm feeling it.  Anxious and pre-occupied with thinking about possible outcomes.  Silly I know since worrying isn't going to help or change anything.  I just seem to feel this way every time I have a check up. 

I know you all get this.  Others try to understand but I guess it's the old "until you walk in my shoes" deal.  (And I truly hope they never do walk in my shoes btw!)

 

Hope you are doing well and if you are having a bad day just remember you are not alone.  We are all in this together.

 

My check up is April 2nd.  Scan next Wednesday.

Hugs,

Donna

illead's picture
illead
Posts: 874
Joined: Aug 2012

Bill sees the doc at Stanford on Wed., we'll be together in spirit

Hang in there, we are, Bill & Becky

Shoopy
Posts: 210
Joined: Jul 2013

Stay strong Donna.  Remember that one of the 'possible outcomes' is always "you're fine!"

Karl

Rocquie's picture
Rocquie
Posts: 855
Joined: Mar 2013

Hello Donna, I hope you are feeling well other than your case of nerves. Yes, I understand the worry you are speaking of. Not fun.

Three weeks ago, during my latest Rituxan Maintenance infusion, I was talking to my nurse about it. Specifically, I was talking to her about my inability to sleep and my mind's insistence on re-living every lymphoma trauma experience I'd had, for several days prior to every visit to that clinic.  She was very sweet, of course, and reminded me that even if I did relapse, worrying about it does not change anything, and that we would deal with it, when and if it ever happened. 

Her words were encouraging, yet as you say, she doesn't REALLY understand.

One thing I do, that sometimes works, when my mind is so busy and won't leave me alone, is give it a job. Recently, while lying in bed and not sleeping, I used the alphabet. Because I love food and cooking so much, I tried to think of a food that begins with each letter. I got to "U". As I lay in bed trying to think of a food that started with the letter U, I fell asleep. You could try it with whatever you are interested in.

Bless you my friend,

Rocquie

 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Donna,

 I was suppose to get my yearly scan the first week in April, but have moved it to June, so I have a little more time before my nerves will kick in. We are moving to Hood River Oregon May 1st and I'll have new insurance which will pay all costs, so I'm holding off on all Dr visits until we are moved and settled in. I will keep you in my prayers for good results. Try to keep busy and think positive thoughts...easier said than done, but worrying is so hard on our immune system and that's something we do have control over with this stupid cancer. Thanks for checking in. Much love...Sue

(Follicular NHL-stg3-grd2-typA-Dx 6/10-age 63)

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

    Must be a great insurance policy. I guess this Obama Care is better than I thought. John

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi John.

  No Obama Care..it's a new supplement along with my Medicare. You have to be 65 in Washington State to get this coverage, but by moving to Oregon I'll be able to get it now. This whole insurance thing is scary,and even more so when you have cancer. It's crazy how different insurance is from state to state. Take care...Sue

COBRA666's picture
COBRA666
Posts: 2413
Joined: May 2010

Sue,

  I sort of knew it was not an obama plan. All I have heard is bad news about the obama disaster. I think it is beyond scary as to what is in the future for all Healthcare plans now. I am glad you found a supplement plan to offset the charges. I have Medicare and BC&BS and it really helps. I have noticed I am on the phone more with them asking why this or that is not covered any longer. So far it has worked out, but my prescription coverage is really messed up. We need all the help we can get. John

onlytoday's picture
onlytoday
Posts: 608
Joined: Jun 2010

I'm good for another six months!  I am feeling very very blessed.  I asked my onc when relapses are occuring these days statistically.  She said it was 3 years ( I have Stage iv Marginal Zone NHL) - but with the drug they gave me -  (Bendamustine/Ofatumamab) the game may have changed with a longer time before relapse.  Praying that is so!!

Wishing all of you all good things.

 

Hugs,

Donna

Shoopy
Posts: 210
Joined: Jul 2013

Great news!  Congratulations!  It is amazing what they are doing today...a new drug here...a new therapy there.  I truly believe that we will see a lot of cancers become more and more controllable if not curable in my life time...of course...I plan to live forever...so...

Karl

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

That's wonderful news, Donna!  Do something to celebrate!

Hugs

Rocquie's picture
Rocquie
Posts: 855
Joined: Mar 2013

What a relief it must be to hear that news. Now, go and have yourself a good, scanxiety-free weekend. And thank you for letting us know.

Cheers,

Rocquie

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3661
Joined: May 2012

As you recogninze, onlytoday, you are "very blessed."  And we are all delighted, as you can see.

"Statistical relapse time." A term only we can understand....

max

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hi Donna,

So happy to hear the great news!!! That's awesome my CT scan will be next Friday so I'm also getting that little worried feeling :/

I feel good so I hope everything is good with me too. Take care and keep enjoying life to the fullest!!! (((HUGE HUGS))) to you..

Sincerely,

Liz

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi Donna,

  I'm so happy for the good news! My doctor told me the same thing about statistics for relapse...3 years. I'm one year out from my last Rituxan treatment and have been holding my breath nothing new would pop up, but then this darn eye growth appeared in January. I am 4 years out from time of Diagnosis, so I'm keeping my fingers crossed my eye biopsy won't be cancer again. Still haven't heard anything from the doctor, so probably won't now until next week. I hope you continue to stay in remission for many,many, many years to come! Celebrate my dear and enjoy your wonderful news!!! Smile

Much love...Sue

illead's picture
illead
Posts: 874
Joined: Aug 2012

We never had scanxiety but we certainly will now!  So happy for you.  I am going to write more a about Ibrutinib shortly but there is so much out there now and kind of a new way of thinking so you have much to be optimistic about.  If there is not so good news down the line why waste today?  Thanks for letting us know the great news.

B&B

 

onlytoday's picture
onlytoday
Posts: 608
Joined: Jun 2010

Thanks everyone for the love, support, prayers, and good thoughts.   I am blessed in so many ways.  And having all of you with me is part of that blessing.

Gotta go... Time to CELEBRATE!!

 

Hugs

Donna

 

 

merrywinner's picture
merrywinner
Posts: 627
Joined: Aug 2009

I hope you remember me a little bit. I am so happy for your great news. Have fun celebrating!

  Mary  Wink

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