Saturday, October 5, 2013

The Trap

Wednesday, I saw my oncologist to get my most recent scan results - the scan that I hoped would show how well SBRT has worked for me.  What I wanted to know - what we all want to know - is this: "Did those magical gamma rays kill the cancer?"

I fell into the cancer trap, even knowing it was there, teeth bared and waiting to snap:  I assumed I'd learn my future, that it would be there on that paper. For a while, I forgot that none of us can know that,  whether we are diseased or not.  These scans make us think the impossible is possible.

I sat in the exam room until my doctor came in.  He looked at my blood tests and said they looked fine and then opened the file that had my scan results.  He read the impression section to me.  "There is decreased enhancement in the region of the porta hepatis, within the fiducial markers, likely from radiation change.  A cleft of decreased density is likely related as well  ....  There are no focal enhancing lesions to suggest residual or recurrent tumor."

I smiled, because that sounded like pretty good news.  I told him I was going to put it on my fridge with a big fat gold star.  I instantly imagined that with that single line, I will get my dream of seeing my son graduate from high school, which is 8 months away.  "No lesions to suggest residual or recurrent tumor."

Reprieve.  I'm going to live.

Now, I know metastatic breast cancer is like playing the game of whack-a-mole. Odds are it'll rear its ugly head again and soon; I'm certainly not cured.  Only 15% of women with metastatic breast cancer are alive five years past the diagnosis and I'm barely into year three.   But with those results, for now, and maybe a while, I felt that I'd reset my doomsday clock.

My oncologist continued, "we'll will keep up with the zometa, herceptin, and perjeta and I'll see you in two months."

"Two months!" I exulted.  I have not gone two months without seeing a doctor in years; that right there tasted like victory, confirmation that I'm on the path to success.

Sternly, my oncologist told me that next time he sees me I must weigh 95 - a five pound gain. I nodded meekly but my mind spun that comment, too,  into healthy gold.   "There is no reason not to gain weight" my thoughts whirled.  "Surely, in two months, my appetite will come back, the pain will be gone, and I can eat without discomfort."  I went further into the World of Health.  "Maybe all pain will be gone, maybe it's just scar tissue that will heal.  Hey, if my body isn't all caught up fighting cancer, many things can happen:  my weight will improve, my energy will heighten, my need for pain meds decrease and my life become more normal. Maybe I can go on a vacation, maybe I can start a business, maybe I can write a book, maybe I can finish my scrapbooks, maybe I can get the house clean. Certainly, I can get up to 95 pounds.  Heck, maybe I can go for 100, 105 even."

"Maybe," I thought, "I can be normal."

Some serious dreaming right there.  The trap had me but good.  I imagined my future all the way home.  Not like you would imagine the future, because I know I still am destined to die of cancer.  But, I started believing in time again, planning for things days and weeks ahead, simple things like buying new boots for winter, some baby clothes, maybe some clothes or a new coat for me, going on walks to improve my stamina, volunteering at my old school,  planning a vacation, stuff I hadn't thought of in ages.  I even got annoyed at how uncomfortable my implants are, something I'd accepted without question until that moment.  "I have to live with this forever?"

Yesterday, I had an appointment with the radiation oncologist who directed this portion of my care, also to go over the report. As I was escorted back to the exam room and the doctor entered, I smiled big.  I knew he was going to give me great news; after all, I'd had the report.   He was going to tell me, for sure, that he himself had conquered my cancer.

And, as he pulled up my films, he said something surprising, "I'm not that excited about it."  He pointed out before and after pictures.  He didn't see that much difference between the scan I had pre-SBRT and this one.   The changes,  he said, were minimal.

Okay, don't get upset.  I'd forgotten that we had started from a pretty good place - my pre-planning PET scan had shown that the Perjeta had been very effective on the cancer, and the SBRT was going to be done on something already becoming inactive.  So these results reflect that reality.  But they don't show a huge cancer mass murder, like I'd hoped.  I didn't hear "You don't have cancer, you are NED" like I had wished. But no new cancer has grown either, so that's important.  His news was no different than the news I'd gotten from my other doctor.    I'm stable.

I remembered at that moment that it didn't matter; I don't want to live from scan to scan when it's all an illusion anyway.  A week from now, I could be diagnosed with brain mets.  Two years from now, I could be as healthy as I imagined early on.

There is no way to tell from one scan.  The trap let me go.

The doctor asked hopefully if I was continuing with chemo, a slightly deflating statement.  I explained that I was not able to because my white counts still have not recovered, but told him I was still on herceptin/perjeta/zometa, a combination that seemed to be working for me and he was happy to hear I would continue it.

We agreed to do another scan in 3 or 4 months, whether it's ordered by my oncologist or him, and he agreed to see me again to go over the results.  I do like to get both of their perspectives.

Doctors are always a bit more cautious than patients, as they should be - we have one experience to draw from and they have thousands.  It's good to have that discerning eye, or two, to remind you that you still have a critical disease and not to allow your mind to go places that will only become very disappointing, like vacations to Tahiti and Disney and visits with great-grandchildren, which still are not going to happen, no matter how great that one scan is.

It is not easy to stay out of that trap - the trap that is your imaginary future.  And, you have to remember, like my RO said, "If you feel good now, that's all that matters."  

There are not a lot of people who get out of metastatic breast cancer alive.   But there are none who get out of life alive either.  So the question becomes one of time, and one of trying with imperfect methods to peer into the fuzzy, foggy future and see if you are standing there, and we use the illusion of PETs and CTs to try and cut through the muck.  I think the truth is, we just can't know with crystal-clear perfection what is going to happen to us, no matter how many machines peer into us, or how much contrast solution we are injected with.

What we have is the here and now.  We have our families, what's in front of us, and if we feel good, we are good.  It's as simple as that.

The previous years have not been easy ones - the game of whack-a-mole is a hard one to play, because what we are whacking is our own selves.   The trap I fell into was thinking that somehow, this scan would be different - this would be the one that allowed me the luxury of breathing room, that would give me some normalcy.

And, that will never happen again.   I'll keep playing the game, trying to beat disease back, having constant medical appointments while trying to avoid the trap of the future and instead,  just accept and enjoy the here and now.   Those are the cards I was dealt, so that's what I'll do.


  1. Very powerful post, glad it was Ok news for you, your post really shows the huge challenge you face each day, thank you lovely lady, you just a bit amazing. X

  2. I am amazed and in awe of your ability to stand up and deal with the truth- that all we have is today and hope, hard work and toughness. You have it all. I have never said this to anyone-you are an inspiration. Please accept this as the deepest compliment. And hang in there, you are an inspiration! With much love and admiration, Sharon

  3. I am glad the scans showed no progression, and now, focus on that weight! So impressed by your attitude, by your strength, by your humor.

  4. 8 months away. "No lesions to suggest residual or recurrent tumor."

    Praying for June.


  5. I hung on your every word. I'm so sorry you have to deal with all of this, but you are right: all anyone can do is deal with the cards one is dealt. You have the graduation and a grandbaby on the way! Hoping and praying for you and that you gain those 5 pounds.

  6. You are right that all any of us have is today, but part of hope is planning for the future. And I hope this stays stable for a long long time, for not just high school, but college graduation, time to enjoy that first grandbaby, time to finish scrapbooks. Eat! Take walks! Enjoy!
    Elizabeth J.

  7. You remind us all that we only know today. We can dream about tomorrow but we must enjoy the moment and love those around us. Enjoy your day and know that so many people are thinking of you.

  8. So much wisdom, as always Ann. If sheer determination could influence your outcome, well, there would be no question. But we know that's not the case. Thanks to you I have learned so much about mets and Komen and Pinktober and at the very least I can stop perpetuating the pink ribbon myth that I myself believed until not too long ago. Thinking of you--

  9. interesting that mets gives you this perspective, living wiht a psychopath did the same for me... all I could do was one foot in front of the other and stay focused on the hear and now... great training, you graduate in buddhism of course

  10. So true how you note that doctors have thousands of experiences to choose from and we have just one. Best to you Ann.

  11. Thanks for sharing this - you always describe things so clearly.

    I thought of you this morning as I heard the latest story in a series on our local public radio station (MPR) about a man who has ALS. He is not as funny as you (so few are!), but his courage and his wisdom remind me of you. Maybe you would find the series interesting? You can find it here:

    Jill in Minnesota

  12. Your post today is good for me today, it is good for all people trying to figure out the next mystery that is essentially another day that none of us our guaranteed. But your doctor's visit sounds good because you don't have to go back for two months! Also you have to gain five pounds when 80% of the USA is trying to lose weight. I hope you can enjoy some rich sweet or savory foods that you love. Many blessings to you and maybe you can start looking for a cute outfit to wear to your son's graduation and plan a lovely dinner and gift for him. :-)

  13. Wish you all the best. I'm so impressed by your attitude, stay stronger Ann.

  14. Whack-a-mole. You hammered it. (Pun intended.) I have felt that way many a time in life. But especially when my mother had metastatic cancer. I don't comment often, but I love your blog. You have the gift of making us smile while we are pounding the moles. Thank you.

  15. you will be able to make it to your son's graduation day. because you will smile your way through this :)

    God bless you and your family :)

  16. Reading your blog always puts my own stage 2 problems into perspective. Fast. I wish neither of us had this disease, but at least your sharing of your experience is educating a lot of women about a difficult process. That's priceless to me, since control freaks tend not to do well when plunged into a scary major illness/surgery situation. The more information I have, the better I'm able to cope, so thank you. And know my fingers are crossed for you.

  17. I just found your blog today. My name is Ann, too. You are a beautiful person. I'm dealing with some breast "issues", that's how I ended up here. You're the best, and I totally agree with your comments about Pink October and all's people like you who change the world. Your life has really counted and that's about all any of us can ever ask of our lives, that they count. Yours has and will continue to always.


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