Monday, February 16, 2015

Where I am...





I had to tiptoe back into Cancer World last week.  I spent every day at Roger Maris getting my "State of the Union." 

In all honesty, I may be out of touch with what is happening with my cancer.  As I prepared last week to see Dr. Panwalkar, I knew he would ask what my questions were… um… hmmmm.  Did I have any?  I haven't given it much thought.  

Its kind of funny, my cancer has been the least of my worries these past few weeks.  

I've been wrapped up in my frail and fragile mom, who is trying so hard.  She had filled with fluid around her lungs and had a thoracentesis last week to remove the fluid so she could breathe again.  I felt so bad that I was at Roger Maris every day last week, and mom had no scheduled times I could try to work around.  She was a trooper, never complaining about any of it, and quickly befriending the ones who went with her.


All of this has me deep in thought when Dr. Panwalkar strides into the room, last Tuesday.  He smiles and then reaches for my hand and holds it while smiling at me and saying hello, and how are you?

I smile right back and say, "good and you?  You sound like you may have been sick?"   He has an upper respiratory something- so his voice is more raspy than usual.  He says he has some of the "stuff" going around from his kids- just a virus and he is fine.

I smile, as he is assuring me he isn't contagious, but I already know that.  I was more concerned with him feeling okay.  I so rarely ask personal questions about him.  Any communication outside of medical questions, has to be delineated amongst subtleties.  

He mentions my blood work and I tell him it looked pretty normal to me.  "Yes," he says, "except your tumor marker went up to 40."  And then he moves the computer screen to show me a graph of my past tumor markers and I can't help myself, I burst into laughter, as Dr. P starts to chuckle, then laughs too, as he shakes his head side to side.  Clearly we are on the same page.  

The lines are all over the place- up, then even, then down and then shooting up again.  Its a maze that sort of replicates exactly how I feel.   But it does little to tell us what my cancer is actually doing.

He asks if anything new has cropped up?

I tell him I have noticed an area that seems thicker, right by my mastectomy scar. The healed one.  (Makes me smile every time I can say that.)  He grabs a gown for me and says he'll examine it.

He thoroughly feels along my chest wall, along the scar and all around.  "I feel nothing noticeable to me," he says. " But its been 6 months since we've had a scan.  Lets get you in for a scan."

So I then decide to broach the subject of what treatment he may consider if the scan does show something?  He mentions a new pill on the market, with some side effects like Xeloda, but one to consider.  He also mentions another hormone treatment taken in combination with another pill.

Or we could go back to Eribulin, the one I had before for a few rounds.  It shrunk my mets in a few rounds.  Then my hair fell out.  Then we stopped it- as my counts plummeted.   


I like to see where his thoughts are going.  And so as long as we're talking treatments, I decide to ask him about his thoughts on my brain mets.  

I've been researching options.  I've been reading up on something called Intrathecal Herceptin.  Essentially, they surgically place a reservoir in your head, called an Ommaya, and then they inject Herceptin right into the fluid around your brain, since most chemotherapies cannot cross the blood brain barrier.  

He rolls his chair back and I can tell he is turning this idea over in his head.  I ask if they do this kind of procedure here at Sanford.  "Oh yes, with other cancers its quite standard.  We treat some types through lumbar punctures, or reservoirs."  

"Let me read up on it, not many studies on this that I know."  

"Yes," I tell him.  

I dress quickly while he waits in the hall.  Then he walks me to infusion.  He ushers me into a seat off to his side, and I hesitate for a moment, turning to look at his face.  He looks back at me and smiles again, as he reaches for my shoulder and squeezes it, as I simply say, "Thank you."  He nods, and saunters off.


Its merely a day later and I am called with instructions for my PET scan that was scheduled for the next day.  I am jaw-dropping shocked.  It often takes days just to be approved.  But I was both approved and scheduled without my knowledge.  

So early Thursday I had my PET scan.  I prayed for everyone who came to my mind and made it all the way through.

Results coming soon…  

So much more to share.

The heartbreak of a son…

A job offer… (!)



And one of the best Valentine's presents ever.  When your baby sends his Spud cupcake with his hockey number on it, from Walker, MN, all the way home to you.  


Its still the smallest things that say "love," to me.  























































29 comments:

  1. Grateful for nothing that seriously jumped off the page and hoping for a good report from the Pet Scan and glad you and Dr. P are able to laugh together. But I know it's an intense struggle, dear Vicky, to balance your own fragile health and that of your mother and her needs. But let others step up and be there for both of you. And that cupcake - passed up by an always-hungry teenage boy (I KNOW - I have one of those) is the most precious gift. Love you, Vicky, and checking frequently to stay posted on both you and your mom. Prayers for endurance, strength, wisdom, and HELP.

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    1. Those little things we could never have known our kids would do that would make our hearts melt. Thankful for your always supportive, wise and encouraging words. Love you dearly, Robynn~

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  2. Like Robynn, I'm so happy that nothing serious came up. So thankful...saying a prayer for your little mama...and sending love ox

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    1. Thank you for your prayers, sweet friend, I treasure them so. Much love to you~

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  3. I recall how someone said recently that they hold their breath while reading this sort of post, and I must confess that I do, too. All the while anticipating the truth layered between grace and humility. Your posts showcase the peace that passes understanding - while avoiding sugar coating of any kind. You are a great writer! And a great person :-)

    Thanks for sharing this journey with us; your wonderful words spurr me on to more prayer.

    P.S. your doggy is such a sweetie.

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    1. Susan- Crosby is a keeper for sure. Thank you for your grace-filled words- my goodness- they truly touch me. Am so honored to have YOU come along with me, Susan- truly blessed by your friendship and encouraging words. Love to you~

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  4. Oh sweet friend,
    Confession time. I am a breath holder too... as I read each paragraph and take in the details and the bigger picture. What I am left with is a profound sense of amazement, gratitude and always a few tears...as you so graciously share this journey with all of us, your prayer warriors.

    I truthfully feel like I am on that battered and wonderful old truck you spoke about in a post awhile back, taking each curve with you, leaning in to make it around the curve and balancing as we are headed to the next one. I am so blessed to be here with you...on this journey.

    So many prayers for your sweet mama, joy as you and Dr. P laugh together, amazement at the up and down markers, tears for your boy who shared his heart, loves and loves to you and prayers as you wait on the PET scan results. And the cherry on top, a job offer!! I can't wait to hear about it.

    Know I am in your corner, dear Vicky, as your booster and cheerleader. On the winding road, I am here! I will always be praying and holding a sign that says "BELIEVE!". You can count on that!!
    Loves and hugs to the moon and back!
    Linda

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    1. Oh goodness, I am always so honored you all come and read and share in this whole crazy process with me- breathtaking as it may be :) I love the visual of you holding the sign that says "believe," that is inspiring, friend. Much love to you, dear one!

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  5. If my brain was working better, I would ask you some questions regarding the blood brain barrier. If I can jogged it (my brain) a bit, I might email you.

    Thoughts and prayers (as always) to you and your Mom.

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    1. Oh, I wish I could tell you more about the blood brain barrier- but I don't know that much in all honesty. I just know only a handful of treatments are thought to cross it, but most of them don't and for good reason- too toxic!

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  6. So good to see an update from you, Vicky! Loved your visit with Dr. Panwalkar....so beautiful how caring goes both ways, and always open, honest, and HOPE if future treatment is needed. Been praying as always, and now praying for good PET results. You and your mom are both such TROOPERS! So thankful for the help, through others, that the Lord provides, and that you both accept and appreciate the help by doing what you have to do, and always with a good attitude.

    Love that your sweet boy saved his cupcake for his momma! So, so precious! It is the smallest things that show so much love! My dear Superman use to think I was pretending to be excited when our son would give me an inexpensive gift....lol. But it was usually some little something that I had seen when my son was with me, and he knew I really liked it even though I wouldn’t have bought it myself. I was always so touched that he remembered something so small and would get it for me. I still have lots of those little treasures scattered around my house. And one of my latest treasures is from my little granddaughter. It’s the Gingerbread House she helped her momma make at Christmas. It’s their first one. They brought it to me after Christmas and it’s still sitting here making me smile every day! It was such a sweet surprise! (pun intended :))
    It means so much to me. And I know I can’t keep that forever....lol.....but it’s holding up pretty well so far. :)

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    1. Thank you, Nina! My mother-in-law always had a Gingerbread House party. She gifted us with one, when I was dating Superman, and she sprayed it with a sealant that made it last for years. I wonder if that is possible for you to do? It truly made it hard and yet, it held its color and shape so well. So wonderful to truly feel your joy coming through your words! Much love to you~

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  7. Vicky, I know I've told you before, and I am going to tell you again. I LOVE your writing. You have a way of placing the reader in your moment. I continually keep you, your Mom and the rest of your family in my prayers. Thank you for sharing your moments with us. God bless.

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    1. Katie- that is such a high compliment to me- thank you. The writing I love, is one that puts me smack dab in the center of what is happening and so its perhaps what shapes my own? Good food for thought- thank you for coming along and sharing with me :) xxoo

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  8. it's good to hear from you; I continue to pray for you daily.

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    1. I feel so blessed by those prayers, Norma- thank you!

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  9. Such HOPE in this post! but what touched me was a perfect cupcake that made it all the way home...THAT IS LOVE! loved that you laughed at your cancer markers....up and down and all around. I find myself like you...how you correlated your feelings with those markers...up down and all around as well...more then ever..but I am not 'NUMB' anymore and therefor many feelings charging in. Laugh vicky and let God hold the cancer in his hands....he's got this.... love you beautiful lady...many prayers always!

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    1. I am glad you feel the hope, Peggy Sue- I felt it too. Prayers coming right back to you, sweet friend!

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  10. If you can laugh, my mother always says, you can get through anything.

    So much heart in this post, Vicky! The cupcake. Totally melts me......

    Your love for your precious mom. I think we all love her. ;)

    Giant heart!!

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    1. Isn't that the truth, Julie? I admire your mother's wisdom! And my mother is very touched when I tell her she is held in such a loving manner by so many.

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  11. For some reason, I just "older storied" back in your blog to March 21, 2011. I noticed the growth of your boys and your dog in the many pictures as I scrolled. So many things caught my eye: the beautiful pictures of sunsets, gifts, hockey games, relatives, friends. So much awareness. So much love. I continue to think of you and all you are going through. I marvel at your grace and humor.

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    1. Thank you, Kass- that touches me so. A friend and I have been trying to copy the posts into a document that we can edit and hopefully arrange into some kind of book. I want my boys to have them first and foremost and am open to others that may have an interest.

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  12. Have you read Being Mortal Medicine and What Matters in the End by Dr. Abul Gawande (he reminds me of your Dr. Panwalker)...it might help you with your thoughts of your mother.

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    1. I have not read either of these- thank you for suggesting them. I will graciously accept any advice/wisdom offered.

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  13. The giggles got to me, in a good way. Without laughter, what do we have? You're the best Vicky for allowing that laughter to pierce through the wondering and worry of both your own physical health and your mother's too. Love you!

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I welcome what you have to say. Thanks for taking the time to grace me with your thoughts and words!

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