Wednesday, January 8, 2014

mixed...


 " Well some things don't ever get settled.  You just make a place for them.  Learn to let them sit there with you , side by side with the good."  Oxygen, by Carol Wiley Cassella


The temperature yesterday read -23, but with a 15-20 mile an hour wind, the wind chill factor made it feel like -55.  Honestly, anything getting below zero is just plain cold.  -55? Is when cold becomes just painful to experience.

But it doesn't hold us back.  While Minnesota Governor Dayton did close schools on Monday, my need to go to the clinic for a physical therapy assessment couldn't be put off.






My session went well.  Linda, the PT, determined that I have both lymphedema, (swelling in my upper arm and down in my fingers and knuckles) and cording which starts underneath my arm where the radiation of the lymph node took place, and travels down to my knuckles.  Its a tight feeling within my arm, and it feels like a "cord" that is tight and tender at the same time.  Its uncomfortable, but not painful.  

So Linda showed me some exercises to do.  She also fitted me for a compression sleeve, and glove.  They take some getting used to.  And what we don't know?  Is how I will respond to treatment.  

Afterwards, I walked from the PT building through the skyway over to the main clinic and got my blood work done.  As cold as it is, I love seeing the sun shining and the crisp and sharp look the cold brings to everything. 

My lungs don't necessarily respond well to the frigid temps, but I pay them as little attention as I can.  

As I am sitting and waiting for my turn, a friendly face appears before mine.  The woman says "Are you Vicky?"  "You spoke at the Health conference right?"  "I met you there and I read your blog."  "Can I just give you a hug?"  I'm swept up in her big hug and listening as she continues.  "I've had the surgery and I just wanted you to know its good.  I am doing well.  You'll do great."  She says such kind things, and before I can ask anything more about her, she is gone, leaving me sitting there smiling."  I'm so caught off guard at being recognized, I never adequately recover.



Today the temp was a mere -15 when we left for Roger Maris.  As I chatted with Cathi the receptionist about the upcoming Pink concert, my pager was already vibrating in my hand.

It was a new nurse who took me back today.  She told me to forgive her, it wasn't her usual job, she was only filling in.  But she had been told by the other nurses "Oh its Vicky?  She is so easy, you'll be fine."

I laughed and sent up a quick prayer, "okay, lets make this one easy too please."

Dr. Panwalkar made a hurried entrance.  

He asked a few quick things and then smiled and asked about our holiday.  

"Well…" and I launch into the trip to the ER, the bleeding, the tests, the wondering, the worrying.  He looks completely surprised.  He listens to me and says, "well lets just get those ovaries out then."  I'll call the OB and talk to him.

In my mind, I am already trying to decide how to tell Dr. P. The doctor I saw wasn't overly optimistic about me having a good benefit from having my ovaries out.  Statistically, it doesn't improve my overall survival. And the risks of surgery are greater because I am a cancer patient. He wouldn't really recommend me doing this surgery at all.  It had been so hard to listen to him tell me this.  I know Dr. P  would not recommend having them out if there weren't a true benefit.  Yet I am stymied in convincing the OB otherwise.  Besides...

Do I want to have a surgery done by someone who isn't confident its the right choice for me?  

But first, we have to tackle the news I've been waiting for...

Dr. Panwalkar turns the computer screen to me to go over my scans.  "Your brain scan is good. Nothing new."

I'm relieved.  And yet, I know in the way he has said it, the next thing he says will not be as good.

Oh how I know him… more so in the lapses, and lulls then the words themselves.

Your ct scan, however, shows 2 new spots.  

Ahh. There it is.  The NED wrecker.  He is just a fading glimmer on the horizon now.

Your tumor markers have also slightly risen up out of the normal range now.

He then proceeds to show me on the scans.  I admit to him I've started up with a bit of a cough again.  And the cold and how it hurts.  And… well, I've certainly wondered.  

"So lets stop the Tykerb," he says, smiling.

I'm somewhat relieved and yet surprisingly saddened too.  

His eyebrows raise and he says, "Is this not what you have waited for?"

"It is," I say, "but part of me feels like, better the devil you know, than the one you don't."

So what is next?


Its then that Dr. P gets paged.  And he reads the first message and doesn't respond right away.  Then, almost instantly a second one comes, and this time he excuses himself and leaves.  

He is gone for awhile.  Rick and I sit and chit chat idly.  

He suddenly reappears.  But he is visibly different.  Subdued.  Serious.  Is that sadness I am seeing?  Rick says later he read it as sadness.  Whatever it was, whatever he just did or found out, wasn't good.

We're more quiet now and my mind rehearses the question I need to ask him, as he goes to examine me.  

Afterwards, he is again quiet.  He is both a million miles away, but observant and still with me.  He also knows me too well.  "What it is you are thinking about?" He asks.

And then the whole story about the OB and how I feel tumbles out.  

"Can I see a different OB?"

He quietly muses, "yes, I just don't know any of them.  Its hard to ask them to do something on short notice for you when you have never met them." 

We discuss a few options and then he comes up with his own idea of who he can ask.


We conclude with the plan of finding the right OB and getting the ovaries out. Then recovering, and then he suggests a hormonal treatment, Aromasin, to see if we can get the tumors to respond to that.  

"We have some time to try and see if it will work, and if not, we can consider other things later."

He walks me to the infusion center, his hand rubs a circular motion on my back as he pats me and then offers a quiet good bye.  


















48 comments:

  1. I am not good with words, that i know. But i went from laughing at being fexognizes and hugged to tears of wanting to hug you too to let you know. We care! Between the cold ridgid weather and your doctors visit you amaze me with awesome strength. I just know if it was me well lets say. My attitude simply would stink. Love you
    Vicky. Hugs to you from afar!

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    1. Verna- you're so sweet! And I happen to know you attacked the whole bc thing like a true warrior woman and haven't looked back :) Love to you friend! Hope you and Bud are well :)

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  2. Odd for me to say this, I've never met the man... but when you speak of him, Vicky.. somehow he seems like an Angel.. his mannerism, his inquisitive, intuitive, comforting way. When people like this show up in a life, in your corner of the universe at just the right time, you have to wonder.

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    1. Karen- you have such a keen insight- I always feel he somehow "intuits" whatever I need at the time- I definitely know I've been graced with having him lead the way for me!

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  3. And that's why I read the other post first, Vicky. I knew you had something to tell us and I wanted to celebrate with you first. But, though you're caught in this place of Dr. P telling you one thing and another doctor telling you something else, I would lean in to Dr. P every time. He knows you, quite literally, inside and out. And you know and can trust that he would never recommend anything to you he didn't think would far outweigh the cost vs. benefit ratio. Which still doesn't mean that you aren't left with the thoughts and concerns and worries that have to accompany pondering the surgery. I'm praying for peace and a better outcome than you can anticipate right now. I have a few girlfriends who had to go through this because of their breast cancer and it has made a difference for them. But I'm still incredibly sorry you have to walk this new path.

    And damn NED for standing you up. Let's get a NEW NED who will show up after your surgery and show you a new window to look out of and who will be a VERY good dancer. I love you and wish I could change so much about your situation, Vicky. But when I watch Bruce Almighty I know how messed up I would make everything so I have to lean into what I don't understand and trust the One who does. So, gearing my prayers toward today's news and sending you enveloping and squishy hugs - and wishing I could bring you here to California to warm up. Can't IMAGINE that cold on your precious lungs. Love you.

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    1. Snap- I'd be in California in an instant!! We'd have a ball together- of this I have no doubt!! Thank you for your thoughtful and wise responses- all of you mommy mentor me so and I hope you know how much YOUR words impact my life!

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  4. Hmmm, so many thoughts and feelings and not knowing where to begin. First, that meeting and hug might have been just the extra push you needed to get through the day. I've had this happen a couple of times, and it's always a little disconcerting for this introvert, but ultimately comforting as well.

    I'm so glad you were able to get the good news of the brain scan and then also to be able to discuss your feelings about the OB with Dr. P. It's good to have a plan, even if it's maybe not a fun way to go.

    I think you really have a gem with Dr. P - he's what all of us imagine our oncologists could be. The idea of him being sad after his break during your meeting, the hand rubbing your back, listening to your concerns. I think you are probably blessings to each other.

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    1. I am right there with you as an introvert, but its one of those things I have learned to "lean into" versus shy away from. I try to think of it as maybe helping someone else and clearly it usually helps me too. Yes- about Dr. P- and truly so many of my bc friends speak equally well of their oncs - so we are blessed overall as a community I think.

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  5. i imagine letting things be unsettled and creating space for them to sit side by side with you is not easy. i imagine that's what it feels like for people who experience a loss, like you did with your dad. you don't like it, it remains unsettled in a way, and you just have to make room for it in your life. i don't like that that is your reality, but i agree with Melissa that while God allows difficulty, He sends gifts along to make that difficulty bearable. Having Dr. P is one of those gifts, and i'm sure you've journaled his name alone many many times as you've counted the gifts.

    in just the small cold spell we've had here, i've noticed how much brighter the sun seems when the atmosphere is stripped of everything that could stand in its way. while it is beautiful, it does seem a bit more harsh than usual. perhaps it's supposed to be a diversion from the deep chill.

    i love that Dr P said, "we have some time..." time to become, time to embrace the reality. what a gift. may you find His peace pervading this time. do not give in to discouragement.

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    1. You've truly assessed the situation very astutely I think- well said! Yes- Dr. P finds ways always to keep things in perspective and I truly rely on that to help me keep a proper focus. The news isn't always what we hope to hear, however, how we choose to deal with it can make a big difference.

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  6. Dear Vicky, I'm still near, hopefully among the "good" mentioned in the quote. Good, but not perfect. Searching, wondering, journeying, like you. But it's all so much better with a friend nearby, I'd like to think. Having gone through several health scares, I honestly can't imagine how you bear it up, but you do, and then the next day comes. God bless you sweet friend!

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    1. Roxane- I think its because I don't bear it alone. Truly I marvel every day at how many show up here so consistently- both the ones that comment and the ones who don't- but they're here- reading and paying attention and making me feel like I am not doing this alone. I have Him walking with me and all of you- I just have to keep putting one foot, faithfully, in front of the other- as we all do! Hugs sweet friend!

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    1. Thank you so much! Blessings and love to you :)

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  8. Love, hugs & prayers to you Vicky

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  9. How I wish Ned hadn't left you on the dance floor. From a practical side, bandagesplus.com sells a lovely inexpensive wrap roller that is my favorite lymphedema accessory if you end up learning to wrap. Hugs and prayers in finding peace in your mixed bag.

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    1. Oh Marcy- thanks for that tip- will look into it for sure! We have just started so I have much to learn :) Hugs and prayers right back to you!

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  10. Love, hugs & prayers to you Vicky

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  11. With you in feeling disappointed. With you, too, in being full of hope for the future and full of gratitude for the good.

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    1. Thanks Bonnie- I truly think that very succinctly expresses exactly what I feel- thanks for being alongside me!

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  12. I am in agreement with Robyn; damn NED.

    Well, there are moments when it's just hard to know how to express what is on the heart. So I will simply say that I am praying for you. On my knees and asking the Father to hold you close, carry you and give you wisdom. I must add, you have a wonderful spirit in all this. I pray the Holy Spirit, our comforter, counselor and friend will guide you moment by moment.

    I'm sending my love - I'm so proud of you, truly.

    p.s. your doctor is a peach :-)

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    1. Susan- yeah- NED is fickle to be sure and elusive. Its all right- way too many other blessings to count- my gratitude journal is still filling! Thanks for the kind words- truly- they encourage me. Hugs friend!

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  13. Still checking in. Still praying. Day by Day. Love.

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    1. Thankful you are still doing each thing you do! Love to you Kelly~

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  14. I hear ya and I understand... So glad we have doctor Dr. P and Dr. L :)
    Big hugs and continued prayers my friend.
    Michelle

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    1. So good to see you here honey! Gosh I think of you often! So glad we both have a Dr. P and yes, a Dr. L- you and I both truly get how blessed we are! Big hugs and prayers ongoing for you as well!

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  15. I still pray for you daily. May God answer all the prayers with good news soon.

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    1. Thankful, continually, for those prayers Norma- blessings to you!

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  16. Still praying - still trusting friend - you amaze me EVERY time you write/share.
    love you!

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    1. You are too sweet and I am long overdue on coming to visit you- soon- I know I saw a new post pop up- look forward to coming over and catching up! Love you honey!

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  17. The gift you were given that day was from Dr. P - "We have some time to try and see if it will work, and if not, we can consider other things later". More time is always a blessing when it is given to us. Time, the cradle of hope.... praying always, dear friend.

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    1. Its true Eileen- the feeling of time to do what needs to be done is truly just that- a gift and I am resting in that. Thankful for those prayers Eileen!

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  18. I don't even know where to start with a comment, so I'll just keep praying for you and having good thoughts. Bless you, Vicky. Your strength and positive attitude continue to amaze and encourage.

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    1. Thanks Ms. A- I know how it feels and please know how much I think of you! Blessings and love to you!!

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  19. Dear Vicky..this is one of your post..I had to walk away from and think..and then return to... Through my journey with my mom...I started being in awe at the doctors and nurses that work oncology. When I was younger, everyone said, "peggy you need to be a nurse or a vet" but I new that I could not leave my work at work...if I had to deal with people/animals hurting or in pain or fighting for there lives....i would be a mess. I marvel then...they choose to do this to HELP and make a difference...but they see things and ,meet people they care for..and loose them. I then think of those that work with childhood cancer..and I am plum blowen away at the utter courage that would take...I would want to be there, to do that...but my emotions would get so connected that the loses I am afraid would be to much. I think your Dr P walks that fine line....and he has his moments. I am thrilled that the The scans on the brain are remaining normal...and saddened to here that the lungs show more...So my prayers will be...that the Lord guides those around you, for your lungs and for the surgery to remove or not remove your ovaries. And Dear lady, the Lord needs you right were you are....Time is on your side...( I feel this strongly so I had to share) and I will keep praying for that miracle...because they DO happen. Your amazing.and beautiful........hugs and love always!

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    1. Thank you Peggy- for faithfully following along after having just gone through this with your mother- it speaks volumes to me about who you are. I love that you share so openly with me, all that read. Thank you for being you! Hugs and love to you!

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  20. Oh dear heart, my friend Vicky,
    What a perfect quotation to start this post. It truly resonated with my heart. Yes, "Well some things never get settled. You just make a place for them." I could picture us sitting on a park bench on a warm summer's day, each of us holding a cup of tea...and slowly ooching over on the bench to make some room for those things that don't get settled. We would be chatting about how we would learn to welcome them along side us as life lessons, along with the good. Some, uninvited guests we never would have hoped to have in our lives, yet they have been some of our greatest teachers.

    When I initially read your post it was like being on a roller coaster...going up with the great news about your brain scan ("your brain scan is good, nothing new") and down we go ("your ct scan shows two new spots") Oh Vicky, I am so grateful for the good news and so sorry that you heard such hard news too.

    I am so grateful beyond words that Dr. P is there to love and guide you. I have so much trust in his expertise and wisdom. He is so smart, experienced and he knows you are a treasure. I trust he will help guide you through the tough choices you need to make. His calming presence radiates HOPE.

    What I know for sure is that an ARMY of prayer warriors are at work today, asking God to cure those two new spots and to help restore your markers to a better place. We are on the roller coaster with you, dear friend, loving you each day and sending warm, warm hugs and loves your way.

    I. will. never. stop, praying.
    Your forever friend, Linda

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    1. Linda- the book that the quote comes from is a gripping-fast paced read with some really well-done pieces of prose in it. Its a mystery that has some hard stuff in it- but I still think about it often :) I am definitely hanging onto HOPE and yes that is indeed what all of the Oncology Department extends to us- from reception to our nurses to infusion to the volunteers, to the oncs themselves. Its truly what keeps so many of us going- that and people like you- willing to invest their time, energy and prayers in us- that is what counts and makes a difference I think. Thankful to you- to the entire army for all they have done and continue to do! Love to you, forever friend :)

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    1. Amen Peggy- to both you and Linda!

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  22. Checking in with you Vicky. Love your honesty and storytelling in your post. Praying for this next phase......

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    1. xxoo- thankful for you always friend :)

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  23. Vicky,

    If you could close your eyes and picture being guided up marvelous old stone steps, a dream all in colors of pink, to a place you aren't sure how you got there -- and being taken up to the top of something like a castle - and peer out and a man tells you 'it is going to be okay, all these people - all these people are praying." and you looked out and there were thousands, thousands, more people than one could see out to the horizon, all different races - and your heart knew they were praying. And I don't know what okay means, but when there are that many people praying, God's will is being done and it is 'okay.'

    I had a dream when I was young - a girl from a conservative rural upbringing - who didn't know about 'dreams or visions' and I have only told a small, small handful of folks of this dream from when I was nineteen years old and laying in palliative care.

    All I know Vicky - is prayer does something. There are things going on in a world we can not see. And all I want to do is wrap you in my arms, touch my hands to your face and say you are so loved, you are so prayed for and ever so treasured. Your family is a treasure. Your words are a treasure. You aren't just impacting people because of your circumstances and people aren't just applauding you for being 'brave & inspirational' - you are just that type of person. Your circumstances you are in are part of your story, but it is not your whole story -- YOU, your heart, your makeup and being are what are startling and moving.

    Friend, you are loved.

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    1. Cheyenne,

      I could reach for words all day- and they'd be sincere and right from my heart. But what you've written, is beyond what I can adequately express in words.

      Your vision- your dream- is profoundly moving! I can so see it in my head- like I'm there with you. 19 years old honey? I can't fathom, and palliative care sweet friend- oh my heart. Where you've been and where you are now and all that's in between I would read if it were a book or we would talk if we were in the same place. I'm touched that you would share.

      Your insight is so compelling and real to me. I swear I am right there with you and I so feel you. You have blessed me- beyond measure.

      Love to you- deep and wide friend- deep and wide.

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    2. beautiful, moving, and anointed. wonderful words of life. I'm blessed to be peeking in and reading.

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  24. Hey again! Just wanted to follow up and let you know that Shelby referred me to a great OBGYN. I had major bleeding issues probably as a result of Tamoxifen. Let me know if you would like her name. She is fabulous.

    You are constantly in my thoughts and prayers. As I told you today, I have that darling Colton in my class to remind me many times a day to pray for you. He is such a wonderful boy. You can be so proud knowing that he comes to school with a positive attitude and enthusiasm for learning. His love for you and his family is obvious. I love his sense of humor, too!

    Take care!

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  25. It is not an easy life for a patient but it is also not an easy life for a doctor either. You have to not get emotionally involved cause it can affect a doctors health as well. But how do you not get emotionally involved when people come looking to you to get well.
    You know miracles are out there. You have to keep searching until you find the right one for the right person and this makes living day to day trying to find one very hard for both people involved.
    But it is out there so you have to keep trying. I can't believe a disease is smarter than a human. All it does it mutate, hide but people find it again. One day it won't have any more options or places to hide and then bang!, you got it cornered and then gone. Until then you have to hang in there Vicky.

    xoxoxoxo

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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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