Another loop in the roller coaster!

WendyV

So my roller coaster ride had been traveling along on the calm, gentle side, and starting last week it stated picking up momentum heading for a big loop as I waited for my scan results.  Today, I had an appt with my onc, I entered the loop and then someone threw the switch and now I'm left hanging at the top!  Ever been there?    So here is the story.  Last Friday I had my CT scan and of course since I work at the hospital where the tests were performed I looked at my results, not being sure what to make of them, I of course had a mild nervous breakdown and  "emotionally vomitted" all over poor Katie!  ( Thanks Katie!)  So, the main focus is on my liver mets.  In June the 27 spots were down to 3, last Friday's scan shows the 3 from last time plus 4 others.  The "old" 3 were described as stable and subtle.  Here is the kicker, both the radiologist and my oncologist aren't sure if the "new" spots are really new and represent progression or if they are old ones that weren't picked up on the last scan.  Excuse me not picked up - what the heck!  So, as my oncologist explains, the spots are very small - all under 7mm - he says that for tiny spots the timing has to be just right for the contrast to flow threw the tumor and cause it to "blush".  The radiologist said that the 4 "new" spots appear to be in the same locations as my initial scans in October and recommended a PET/CT.  My onc said that would be a waste of time, since the spots are too small to show up accurately on the PET scan.   The good news is that my CA 27.29 remained stable at 18, where it has been for the past 7 months.   My onc said, that the only way to know if this is progression is to sit back and wait a few more months and do another scan.  If things look the same, then we will assume that these "new" spots have really been there all along and are just tiny and stable.  If the appear any bigger or if more are evident then he will consider it progression and we will begin to explore our options for a new treatment plan.  

I'm glad I looked at my report, it gave me time to form my  questions and remain composed when I talked to my onc.  He is so serious, and was very concerned about these potentially new spots - if you could have heard his voice and saw his face - he looked so dismail but that's just him.   When he saw I was getting a litte worried, he pulled up both of my scans on the computer and we looked at them side by side - he wanted me to see how little these spots were and that was why it was so hard to see them, and to try to put me at ease.  

So, I didn't cry, which is very unusuall for me - every have one of those friends that can cry at just about anything - well that is me!   I had my herceptin treament right afterwards and my hubby and I watched Wild Hogs in the cancer center.  Nothing like a funny movie to lift your spirits.  We went out for lunch then and talked about how we both felt, and gosh it's hard to know how I feel - I'm basically feeling like I'm just in limbo - hanging at the top of the roller coaster!  I gave that analogy to my husband and he said he was pretty sure I still had enough momentum  to get through  the loop and safely end the ride - isn't he sweet!

Of course there was some other questionalbe stuff on my spine, which happens every time I have a CT or a PET for that matter.  My onc only likes MRI's for my spine mets - so I'll be doing that in another 2 months along with the new CT. - nerve racking isn't it!

So the positives - I feel good, my hair is 1 1/4 inches long, and I'm doing everything I want to do - except for fitting into my size 8 clothes!!!!  So ladies that's the update for now, staying calm, saying lots of prayers!  I'd love to hear if anyone else has ever had a similar experience!

Take care everyone - Wendy

LuAnnH

Wendy,

Not sure if I should say yeah for stable or not.  Your analogy is dead on, ever think of writing books???    Of course your husband is so sweet, I can see why you married him. Do you ever lend him out????  Just kidding, well I will keep my fingers crossed for the next few months that all is stable.

jonimb

Wendy,

Good news.  I think you've got a great onc.  He seems to take everything into perspective, and give you some great alternatives.  I like the wait and see approach, especially as your blood tests did not indicate any progression.

Big hugs.

jjb1984

Wendy, 

Your onc sounds like he's right on top of things and sometimes the best course is just staying the course.  And those spots are small!!  Sounds like little or no progression, like the TM indicated.  You'll dip right down the other side of that coaster and hop off to the next ride; feel free to join me on the merry go round...!

And hang onto being a size 8; I'm jealous!!

Julie

geeta75

Wendy, I certainly hope that roller coaster completes the loop and you come in for a safe stop shortly!! Then you can hop off and finally be on solid ground again.

You know what I loved the most about your post?? I am picturing you (though I have no earthly idea what you look like) with a ruler on your head, measuring down to the quarter of an inch!! Isn't it a wonderful feeling when your hair really starts growing again?? Good for you!!!

Love,

Geeta

Traci-----TripNeg

Wendy,

You know what I like about you? (among other things of course...)

Your signature:

"Life isn't about waiting for the storm to pass, it's about learning to dance in the rain."

Hugs, Traci

ForTheMoment

Wendy honey...

This doesn't sound so bad.. It sounds like even IF there is progression, it is only a little bit.  Sounds to me like they will be able to get on top of it and get you right back where you were in no time.  However, I have a gut feeling, you already are..where you were.  (if that makes sense)  Your tumor markers haven't changed, you're feeling good, etc.  I know waiting for a few months to see IF something is progressing is miserable.  However, look on the bright side.. we are still looking at your liver and your bones, right?  No new organs, no new suspicious spots anywhere else?  There is something to be said for that.  You've been stable for quite awhile..that is HUGE.   My onc has told me the longer we can keep it confined to one or two spots, the better and the longer you can stay stable with each drug, obviously..the better.  Soooo... hang in there, stay calm.... your analogy is perfect, but don't sweat it... you know how this roller coaster goes, you'll be right back on top in no time.  I just re-read this and thought I sounded a bit insensetive... I know progression is scary, and I know what you are feeling,  I'm just trying to stay on the positive side of it. 

Love and hugs...

Erin

katie11

Hi Wendy,

Thank you?!  Are you serious?  I really do think, Wendy, that I've done quite a bit of vomiting of the emotional kind on you too since we got to know each other on these boards, so no more of the thank you!

Stay strong, sweetie - we all know how frightening the thought of progression is, but all the general signs are good - tumour markers especially.  It's been such a tough week for you, so try and do some wonderful relaxing with that gorgeous family of yours over the weekend.

Hugs,

Katie xx

jacqniel

Wendy, I think it sounds positive, too.  Prayers for quick resolution to those 'new' pesky spots, and God's calming hand on your soul.

Hug, Jacque

WendyV

Thanks guys!  And no LuAnn I don't lend my husband out, you silly girl.  And Julie - you misread my post - I said I was doing everything I want except for fitting into my size 8 clothes!  How I wish I could fit into them - they are just hanging in my closet looking at me, getting covered with dust - one year of treatment and stress eating has taken me from my size 8 to size 12 (sigh...)

And Erin - I would never think that you were being insensitive - that's just not you - and your right - there was no other organ involvement, and the radiologist did categorize what they saw as being subtle - which I like a lot!  Of course the hardest part of all of this is trying to explain what is happening to my friends and family.   We all know it's confusing enough for us, but it's even more confusing for them!   

Thanks again for the support ladies!

Wendy

LinTol

Hi Wendy.

I just read your post and wanted you to know that I am thinking about you.  I was getting a little worried because I noticed that many of your recent posts have been shorter than usual.

Anyway, I know that the hardest thing for us is having to wait for answers and not knowing exactly what is going on right now. When we know, we can attack. When we don't know, we have to wait.  Just focus on those great tumor markers and enjoy dancing in the rain!

By the way, you sound just like me with the weight issues.  The size 8's are packed in a container in the closet.  I couldn't stand looking at them.

Have a great weekend.

Linda

macs56931

Wendy,

I'm new to the conversation and web site.  Your message is where I'm at right now.  I just completed my third treatment for bc liver mets although I've had bone mets for 10 years.  The liver diagnosis was like a physical kick in the stomach.  I've been living with this disease since 1997, hooray, but the past two years have become more difficult.  Seems every new treatment is effective a shorter time than the one before.  Right after the diagnosis I was asked to move to a different position at work that would be part time and not so critical to the running of the institution.  I had been thinking of this for a year or so, but to come from them in relation to my disease rather than me because I was ready to stop working full time made me feel even more out of control.  I've used the roller coaster metaphor myself.  We have to get used to changes and living with that metaphorical shoe to drop.

Regarding the liver tumors, I got the same story on mine.  Many but small, too small to biopsy, too small to determine changes, wait for another three weeks.  It's enough to drive a woman to drink, if she didn't have liver mets....   Ah, catch 22 rewritten for women.

You sound strong, continuing to work, taking your disease into your own hands.  Your CA 27-29 is soooo normal.  That's good news.

And for the size 8 clothes comments from others, mine are beginning to reappear after size 10's and 12's because of the new chemo, so watch out what you wish for

Your husband is right about having enough "umph" to get over this hill and head down the other side and up again.  Do you remember the roller coaster metaphor in the movie "Parenthood?"  I think cancer diagnosis is like that, up and down, and the ups are so great.  Hang in and thanks for sharing and listening to a "new" old cancer survivor.

Diane 

wallan

Wendy:

   HUGs to you is all I can say. You are handling everything with an amazing amount of grace and composure..

Wendy A