01-31-2013 My “New Normal” – Survivorship

After dealing with illness, traveling, the holidays, and not feeling very creative, I have decided to get back to the blog.  To those of you who have worried about my absence, I totally appreciate your concern!  I am doing pretty darn good, all things considered…which has made me give a lot of thought to my new normal.

My friend, Julie, a cord blood transplant survivor, wrote me a sweet note a few weeks ago and mentioned that she was trying to find her “new normal”.  It was nice to have a name for this phase of my survivorship.  As a stem cell transplant survivor, I had been thinking a lot about it myself and struggling.  “Whenever I am off of my immune suppressant drug, sirolimus, I can do such and such” and then, “what if that never happens”.   I had to throw off my rose colored glasses and realize that “normal” will never be the same as it was before I got sick. This doesn’t mean it is particularly bad, it just means my life is different.  It is impossible to go through the journey without being changed.   

The first of December I got sick with a sore throat.  It was the first time I had been sick since my transplant at MD Anderson a year and a half ago.  I totally understand now why we must go through all the things we do to prevent getting sick.  Without much of an immune system (I am still on sirolimus), I became very ill very quickly, was hospitalized, and it took a month to get well.  Which made me realize the importance of compliance.  As time goes on, carelessness can creep in.  I truly realized the importance of all the things my survivorship nurse at MD Anderson had taught me.  I’m really good at hand washing and sanitizing, and staying away from people who are sick, but I had come to the realization that I must live my life like a healthy person out in the real world  instead of staying couped up at home afraid of getting sick.  I guess what started me thinking about all of this was that a  few months ago  I tried to get off of sirolimus, with the permission of Dr. Hosing.  It didn’t work.  It took only a week to have symptoms of Graft vs Host Disease, and much, much longer than that to get back to where I was.  Actually I don’t feel like I am as good as I was before trying to get off of sirolimus.  I am really looking forward to my appointments at MD Anderson next month.  This brings me back to my new normal.

I can honestly say that the things I occasionally gripe about…taking a lot of medicine, chemo fried hair, tiredness, frequent blood tests, feeling isolated, and lots of other “stuff”, are really not all that bad.  In fact I am really proud of where I have been and where I am now in this journey.  It is just a matter of acceptance and compliance.  And remembering all of the many wonderful blessings and friendships that have been given me!  The positive things far outweigh the negative.

So, here it is in a nutshell!  Find your new normal, keep compliant with your meds and care, live life to its fullest, and accept the beauty and wonderfulness of being given a second chance!

 

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14 thoughts on “01-31-2013 My “New Normal” – Survivorship

  1. Kathy Roberts-Douglass says:

    Dearest Holly, YOu are truly a LIVING testimony and a child of GOD who we should model our lives after. We all have challenges, but I admire and respect you so. You are so beautiful and I miss your sweet laugh. I appreciate your friendship and pray for you daily! Always hugs/love klrd

  2. Anonymous says:

    Holly, you must not think of yourself as the exception. You see my dear, one days normal is not tomorrow’s. That is a fact for everyone. Life is about change. Yours is normal change plus a little extra. That is because you are an exceptional person. Exceptionally wonderful people get the larger helpings because they know how to handle it and how to use it. Look at you. A drive to raise awareness. Yes I keep up with you. I was blessed when I met you and your family. You are in my prayers always.

  3. Anonymous says:

    Holly, As always — thank you for sharing! You are truly an inspiration to others, particularly those going through a similar journey. I love the photo you posted: beautiful! Thinking of you, Laura

  4. shirley maciag says:

    Holly, Thanks for all the words that you wrote we are at the beginning of the process of finding a donor. It’s great to know there is a light after the tunnel.Shirley

  5. Kelley Rivers says:

    Holly-This is Kelley Rivers Glo’s sister (Kitty Rivers Son) who has had a Kidney transplant now over 25 years old. Given by my brother Mick. Thank You brother Mick for your selfless donation to my health) Yes we all have our new normal and like you said we had a second chance and it is Great that we have to comply with the Meds. I also tried to get off and had a rejection episode which was NOT fun! I just told my wife the other day that I sure get tired of all the meds but the alternative I am not ready for yet.
    Keep up your Wonderful attitude and blog. I don’t think we have met but I do care about you and wish you a healthy, and happy life!
    Glo forwarded this on to me. Thank You Glo.

  6. Anonymous says:

    You, my dear, sweet lady, are the epitomy of strength and grace — what an incredible inspiration you are to all of us. You are an amazing lady…. although I have never commented on your page, I have followed your journey religiously and pray for you always. I sincerely thank you for allowing me to be part of that journey, albeit vicariously. Much love to you, Wade and the family, always…….. Alice

  7. patricia dawson says:

    so glad to hear you are doing ok, sounds like you are doing great. I hope so. I have been sick and got quite dehydrated and was put in hospital for 2 days. I was so bad that they said one more day at home and I would have died. So I’m getting over that. But doing much better. Tell everyone hello, and i miss your dad and Jan so much, want to go see them soon. Hope you had great Holidays………lv Pat

  8. Mindy says:

    Holly,

    It is so good to see you and Wade enjoying your new “normal” life. I think of you often and continue to pray for your health. You know, our perspective on life truly changes when we go through something out of the ordinary doesn’t it? My question is, what is “normal”? Could normal be considered what we were used to prior to a change? To some people, living in a world of sin and shame is normal, to others a world of trying on a daily basis to share God’s love and live more like Him is a challenge. I am so glad to see you tryng to live the life you were dealt to the best of your ability. I think you are on the right path, dear friend! You have truly been an inspiration to me. Thank you for sharing your adventure with me. It has made me more thankful for good health. When we are handed a challenge in life, we must dust the dirt off and carry on with our scrapes and bruises. Now that doesn’t mean we don’t cry a little along our journey, but we turn to our Father and ask for guidance every single day;-)

  9. rap55 says:

    Holly,

    Wonderfully explained, you are embracing your new normal! I look forward to hugging you later this month.

    Love to you and Wade,
    Rosanna

  10. Mikie says:

    Glad to see you back on your blog, Holly. You are definitely making good sense!! That is a great photo of you and Wade. I’ve come to the conclusion that Wade is a jewel!! He is also a very lucky man! Love you guys, Mikie & Dwayne

  11. hollyeasley says:

    Thanks to all of you for your very kind and meaningful comments. You lift me up, encourage me, and make me smile! Big love to you all!

  12. There are so many aspects of you to love, Holly. I was hoping you wouldn’t stop blogging now that you are, um, hmmm, getting toward your normal. There’s nothing like winter to bury creativity. New things will find you to spark that. And this was one of your best posts ever; it applies well beyond cancer. So many people are looking for their normal. It’s a breath-catching moment when we all wind up on the same page, your blog page, during that search.

  13. cindy weatherly says:

    Dear Holly,
    I think of you often and am glad to hear you are coping with your new normal. I have decided that there is no normal anymore and just praise the Lord for every single day he gives us to love our family and friends.
    Keep hanging tough and know that you have alot of people who love and support you and pray for you, but most of all that the Lord is using you in a mighty way. God bless you!

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