Jump to content

A Jen update


jcawork

Recommended Posts

Thanks so much for the posts. It means a great deal. I am ok.MRi confirmed 2 brain mets, PERT results not in yet but preliminary call is ovaries, other lung and possibly 1 disc are lit up.

3 WBR done. Ovaries come out soon. I as told I will actually be put in some text book if they are sclc as its so rare. Arnt I the lucky girl?

Onco agreed to Topo and VP-16 pills as my next line of chemo to start after wbr. I think thats too long to wait but they dont like wbr and chemo together I hear.

Scared, miserable, mad, sad, disappointed and more upset at the strange "your gonna be dead" vibes I am feeling from med staff. Onco nurses crying and hugging me etc..... All med. staff have been so GD negative. No real hope offered. All different med staff, all top notch. It has made me ill.

The reality is this is bad and the prognosis worst. I also cant imagine having the steam to do it all again, w/o a lot of hope, for chronic care seeing no end to the tx in sight. I just cant stand it.

Thanks again for the posts.

Thank-you for being w/ me all year through this miserable GD journey. I can't imagine having done it w/o this board.

Jen

Link to comment
Share on other sites

Jen...

When I went back upstairs after my relapse, to see the infusion nurses (who had given me my daily Amifostine shots during chest rad) they too all looked so sad and upset....until they took MY cue. I was pretty much past the initial shock by then and told them I was going to stay positive, fight this again and not let myself sink into the fear....and that THEY could do the same. They could all send out prayers, good thoughts, positive energy, good vibes.....whatever they had or were comfy with...they could send it out into the universe on my behalf because I knew it would help!

And I know it has. Just as it will for you.

Set the tone for those nurses and the other staff, honey. Don't let their sad faces or tears bring you down...because the truth is...NO MATTER WHAT CANCER IS IN THERE RIGHT NOW...THEY HAVEN'T BEGUN TO REALLY TREAT IT YET!! Well, but for the WBR. And that's just been 3 days.

Wait and see how you are doing after the next 2-3 weeks...after the WBR is over...after your ovaries are gone. Wait to see what the next scans or tests show before you go letting yourself feel so hopeless!!

I know going thru all this again is not easy to "look forward to"....but other than my first cycle of Topo...I've actually felt pretty good! Appetite, tummy, everything but for some fatigue. And you'll feel so much better when those oversized ovaries are gone...I just know it.

Hang in honey. Try to relax this weekend. Clear your head as much as possible of all the worries and take it as it comes. Try. Please? I know you can get thru this better than you think you can, at the moment....and we'll all help you too.

You've got the steam to do this, Jen. And what you lack...we'll fill in for you. We're here and you've got your great family and friends too. Breathe....and let's go forward and fight.

Link to comment
Share on other sites

So glad to see you post and let us know how you are. I know it's easy to say, "don't let them get you down" but deep down, you can and will continue to fight this. I KNOW you can. You are a very strong person who doesn't give up. Once they start all the meds on you, you'll start to feel better. My hope and prayers are for a complete turn around for you.

Joanie

Link to comment
Share on other sites

Hi Jen, sorry you are having the hardest time of your life. But you must keep fighting. Don't give up, remember that wonderful family you have. By your picture it seems to me that you get a lot of support at home.

Take one day at a time, and have faith in yourself and your highter being.

I wish you nothing but success in fighting this beast. You can do it!!

Whatever you decide to do, you know we are always here for you and will be whenever you need us.

I wish I could do something for you to lessen your pain. I can not imagine the fear you are going through. I just know that it breaks my heart to read your post.

I pray for healing.

Maryanne

Link to comment
Share on other sites

So sorry to read of the pain you are feeling right now. I'm with Addie on this one - set the tone for this go-round with treatment. Dig deep to find the strength to go through it again, believing that the outcome will be good.

I know that these are only words, but I sincerely believe in the power of positive thinking and I'm sending all my most positive thoughts (and prayers) your way!

Stay strong.

Kel

Link to comment
Share on other sites

Jen,

Its easier said than done, but I know that if you have had five kids you are strong enough to wage war right now. I will pray for strength and courage for you at this horrible time in your life. I agree with the others about you setting the tone for treatment. Its tough. Its not fair, but it is...so the only thing you can do is not give up. Prayers are being said right now.

Nina

Link to comment
Share on other sites

I have read/listened to most of Bernie Siegel's books, and he has several stories of people beating the porgnosis.

I am paraphrasing here, please don't quote me

One tells of an older woman who insisted her daughter buy her a new spring purse for her birthday, even though it wasn't spring, and she was not expected to live that long. Bernie went on to explain that the mother wanted something to hold on to, and she did use that purse the next spring.

Another was of an older gentleman, a landscaper, who he told needed surgery immediately. He refused, because it was spring and he needed to make the world a beautiful place. He had the surgery later, and never returned for a follow up. The man never returned for a follw up appointment, and Bernie assumed he had died. Then the man showed up several years later because he got a hernia from lifting heavy rocks in his landscaping business.

I went through a scary time last fall, and when my own primary's office gave me those big sad eyes, I jumped right in and told them to get that look off of their faces. I told them I was not dead yet, so don't even go there.

Couple thoughts again from Bernie Siegel

We are all dying. Cancer or no cancer

and my favorite

You are either living or you are dead

gail

His website is http://www.ecap-online.org/home.htm

Link to comment
Share on other sites

Dear Jen,

I feel the need to share this information with you one more time. I know I have shared this with you in the past, but here it is again.

I know for a FACT that there are LONG TERM EXT.SCLC Survivors in this world. I know of 3 right here in my neck of the woods. One is a very soon to be 6 year survivor, one is a 14 year survivor and the other is an 8 year survivor. I share this with you because it's TRUE and because you need to hear over and over and over that others have beat the odds and so can YOU my dear!

Please take the POSITIVES and go with them. We all no the other side of the coin, and that goes without saying. So,please try to stay positive the best you can.

As my dear friend Gary always said,"It's another great day to be alive" It's a good moto to live by.

Link to comment
Share on other sites

Hi Jen, I think you are handling it very well as you look more positive than them. I agree that you shouldn't have the WBR together with chemo at the same time as it would be very hard on you that think you can't bear...the chemo regimen will hit very hard, not the same as the first line chemo.

Don't lose your fighting spirit as treatment is coming. Disregard the comments, only live for yourself and enjoy everyday. My best regards to you!!

Link to comment
Share on other sites

Jen

Sorry things are so scary right now for you. But the WBR is going to take care of those brain mets, and then the chemo can start on those other pesky cancer cells.

I think it's possible that treatment works better if you truly believe it will help you - isn't that the philosophy behind the 'placebo effect' - people experiencing a physiological response in the absence of treatment, simply because they believed they were being treated!! Thinking positive really can make a difference.

Hang in there!

Karen

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.