Friday, August 9, 2013

Shift in Plan


I am here and okay. There have been some changes but I feel strongly that they are the right ones. I am no longer pursuing inpatient IVAC. It did not hold the disease for more than a couple of weeks and for the massive side effects it caused and all the required transfusions and hospital time it required, it seemed against all logic to keep going with more cycles. I’m having unmistakable lymphoma pain.

We’ve regrouped – long conversations with Dr. D, Dr. O, my therapist, family, special friends and most importantly, myself, over the past couple of weeks. I have decided not to pursue a third transplant at this point. I am trusting my gut and my instinct on this one, which are speaking to me very strongly. I am not on board mentally, physically or emotionally and I’m most concerned about quality of life right now. I would need to be in close-to-perfect remission

With that said, tomorrow we head for a beach vacation in Rhode Island where we’ll spend time with my brother- and sister-in-law and niece and nephew and then my parents, sister and maybe brother and wife with friends dropping in and out as well. Sam Dog is coming, too. I know that the sea and the sand will do wonders. We secured the house rental months back, and I'm so excited that the timing actually worked out for us to make it. 

I’m starting up an oral low-dose chemotherapy regimen today, which I’ll be able to bring with me. I’m getting hooked up with at-home Neupogen shots in case I need them. I’m able to get bloodwork checked at a lab down there. I’m in the hospital right now getting two units of red blood cells to boost my energy as my counts were very low and I’ve been very symptomatic (hematocrit of 7.4). Dr. O and his team are doing everything to accommodate this vacation realizing, as always, the importance of being able to manage this disease while still living my life.

I hope to have some quality writing time with my laptop over these two weeks away as well. I’ll write in more detail about what this all means but that’s the gist. I’m looking forward to sunsets over the ocean, lobster rolls, outdoor showers, and plopping my toes in the water, ass in the sand.


21 comments:

  1. Have an awesome vacation - I love your to do list: ass in the sand!!! YES! Have fun!

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  2. I wish you a wonderful vacation. Enjoy! Huge hugs Anniken

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  3. Karin.
    Have a wonderful vacation! You deserve it!! Much love to you and your wonderful family.

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  4. Enjoy your vacation, I hope it does wonders for your mind, spirit, and body!
    Karin, I am pulling for you everyday, and hope and pray some clinical trial opens up which would benefit you. It could happen.
    Hugs from Arizona,
    HOLLY

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  5. There is nothing more healing then sun and the beach. Enjoy it and absorb it as much as you can. We'll be thinking of you. Donna and Don

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  6. Hi Karin, I am writing to you from the Block Island Ferry. Our family vacations there with a group of friends. Where are you in RI? I lived in Narragansett. I agree the sun, sand, family & friends are so good for healing the spirit.
    You are wise to use your gut as your guide, it will never lead you down the wrong path. Keep true to that little voice. Today is Sunday and it it just a spectacular day down here in RI ! I know you will enjoy every minute you are on vacation. Enjoy writing and look forward to hearing from you. Hugs & love Maryellen from Six Paca. Com

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  7. Hi Karin, Enjoy your time at the beach with family, good friends, delicious food. My favorite times were those spent with my grandmother and brothers at the Jersey shore. Those memories are very comforting for me. So enjoy every moment and as always sending you healing thoughts and prayers. oh and don't forget the ice cream! Have plenty of ice cream!

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  8. You have made a tough choice with grace and courage. I hope you are enjoying a glorious vacation with your family. Love and light to all of you.

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  9. Has CAR treatment ever been mentioned, or is it still too early in development for a case of your nature?

    Pulling for you Karin; I've read your entire journey and have been so inspired by your strength, grace and determination. Enjoy the feeling of the sand in your toes, the rippling of the tide and the silence of being under the water.

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  10. Thinking of you and hoping you are enjoying your vacation, Karin. Wishing you the best.

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  11. Hi Karin,

    Hoping your vacation's wonderful as you and your family deserve it!

    Everyday, you are in my thoughts and I know so many are pulling for you and your FULL recovery. God's plan is at work...wish it would hurry up already! :)

    John

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  12. I hope you are enjoying a wonderful vacation with family, friends, SamDog, the sun and the sand.

    I know you've made a tough decision and I admire your spirit and courage of your convictions.

    All good thoughts
    Kathy M

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  13. Ass in the sand indeed! Hope that you are enjoying every minute of it!

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  14. Enjoy Rhode Island and all the healing powers of the ocean! I've followed your blog from the beginning and have sent you thoughts of love and healing along the way - sending more now and wishing you all good things. You are one kick-ass strong amazing inspiring awesomely talented lady.
    - with love, Audrey Neddermann

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  15. Hope this time is going as you want it to. You are so precious to so many people, dear little girl. God bless you and your family. Love, Irene

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  16. Hope your toes are in the sand..... the butter for the lobster is melting.... and your "hienie" is in the beach chair!

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  17. Thinking of you everyday and sending love, light, warmth and hope.

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  18. Thinking of you and your family everyday.
    R

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  19. thinking of you, you sweet girl...
    thoughts of love and peace sent your way XO

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  20. Missing you and your writings each and everyday. Hoping you are feeling well. Love.. US ALL!!!!!

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