New Normal

I don’t remember what feeling good or normal feels like.  Honestly.  I’m not trying to sound overly dramatic, but the ugly truth is when something like cancer happens, your body keeps getting dealt blow after blow after blow and as you continually absorb each new thing there begins a new normal.  A new normal that cannot even fathom having been healthy in the first place.  What must that feel like?  And why didn’t I relish it when I had the chance?  What I wouldn’t give to go back and just feel what it was like again before cancer ravaged my body, even if just for a moment. 

Today while I was waiting in the gowned waiting area for my CT angiogram of my head, I was conversing with some ladies who were also waiting.  I realize my story sounds particularly crazy when you just see me and I look healthy and perfectly fine (if I have my hair down and you can’t see my transplant site from my neck dissection) but the ladies were aghast at my tale even though I tried to downplay it and shrug it off and turn the attention to someone else.  One woman asked, “ok, but how do you feel?” I quick mumbled something about just being grateful to be here but the more I thought about it the more I realized: I have absolutely no idea how I feel. 

I mean, I feel ok…I think.  Lately, my new normal has been headaches.  Day after day they keep getting worse and more intense.  My neurologist is really kind and compassionate and for that I’m appreciative.  He is working hard to get this sorted out and fixed for me but in the meantime I’m left with a new understanding and appreciation for two things:

Pain makes you someone you don’t want to be.  Experiencing chronic pain has opened my eyes to how miserable this can really be.  It makes me want to pull away from everyone and everything, interactions are now often forced and fake and interacting with people sometimes feels like a chore. And trust me, I’m a people person, I love being around people so this is really hard.  It makes me feel like a diluted version of myself, sometimes just going through the motions.  And chronic pain has made me realize that faking feeling ok is just easier.  It’s easier to just slap on a smile and get through.  I imagine this is a lot worse for many people than it is me.  Mine are headaches and while they are chronic they are not completely constant and certainly not always debilitating.  You have my deepest sympathy if you also must deal with this in your daily life.

Hidden pain is frustrating and…shameful.  I don’t look like there’s anything wrong so I feel like I’m overreacting or being dramatic.  When I had pain directly related to surgery or cancer metastasis or radiation, there was a sense of purpose in it almost.  “This hurts because this happened.”  But when it’s headaches and it’s unseen and there’s no known cause, it’s frustrating and hard to deal with. 

We are getting through this and I’m optimistic that something will be solved in the near future.  I had my CT angiogram today which didn’t show anything (but we were warned before it that it likely wouldn’t.)  The next step is the catheter in my brain to search for a fistula, this will likely be this week or next.  My neurologist seems to think this is what’s going on, I guess we will see.  In the meantime, I’m left doing something I really, really, really don’t want to:
Taking high dose steroids

Tonight's dose....

I’ll be taking a very high dose (so high that the pharmacist called my doctor to double check that the script was right because he had never gotten a dose that high ready for someone) for a few days and tapering off.  The idea is that it may “break the cycle” of these headaches.  This is just tonight’s dose of steroids and doesn’t include my other meds for headache, seizures, and thyroid. I hate steroids, there’s not really anything to like, but I’m desperate.  If this doesn’t work, he wants me to stay in the hospital for a few days and receive infusions of drugs that may help.  I also will soon get an MRI to check for new tumors (which is my biggest fear).

I hate all of these loose ends and question marks but that is all just a part of this I suppose.  Truthfully, I’m mostly frustrated because I feel like I should feel good right now, but I don’t.  I’m fortunate enough that my cancer is tamed for the time being and it makes me angry that I still have days where I can’t get out of bed. 

I’m truly sorry if I’ve seemed distant or unreachable lately, I know some of you have noticed which is why I’m actually even writing this tonight, I’ve chosen to keep this all mostly to myself but I owe some people an explanation.  It’s not on purpose necessarily and hopefully this will all be over soon.

There’s a purpose.  Somewhere in here there is.  I’m not searching too hard for it though, because God always makes it abundantly clear to me once He reveals it.  I’ll just wait and watch and trust.  I have no reason not to.



17 thoughts on “New Normal

  1. Oh, dear girl. God never wanted us to suffer with disease and ultimately death. That is why he told Adam and Eve NOT to eat of that fruit because He knew that once they did, illness, disease and death would enter His creation and that was NOT HIS WILL! Testifies of the seriousness of sin. BUT, He walks WITH us, each step of our path, and suffers WITH us and loves us and NEVER leaves us or forsakes us. I don’t know how people go through difficulties without Him. He is MY ROCK, MY COMFORT, MY SHIELD, MY PROTECTOR. Praying you will find the answer to your headaches, and relief from the pain. Thanks for letting all of us know. We hold you up. Hang onto Him tight. ((HUGS))

  2. Can’t think of what words I could say that would bring comfort other than. He knows, He cares And so do all of us wishing we had answers

  3. Kim,

    This post should be a required read for medical students. Seriously. It’s a beautiful, clear, insightful, and honest glimpse into the mind of someone new to chronic pain and learning all the emotional and psychological challenges that are tied to it. I’ve never considered these things before and I feel like I have a better understanding of the depth at which it permeates all aspects of one’s state of being. Well, let me rephrase that…I now have a better awareness of it.

    Also, I’m not a religious person, but you make me rethrink what Christianity looks like. There are definitely stigmas associated with it, unfortunately, and I realize that I’m prone to narrowmindedly generalizing people who are “strong Christians”. What I’ve seen from your posts is that you are a much better/truer representation of Jesus than what I see represented in the world and am inclined to write off (my bad). I love your posts. You are strong in what you see as right yet respectful and open-minded. So cool. Thank you for sharing these things publicly.


    1. Hey Tricia, I’m so sorry it’s taken me so long to get back to you. In all honesty, I just didn’t know what to say. That’s literally the nicest thing anyone’s ever said to me but it also makes me sad that you haven’t seen Christ’s love through others very much. Thank you for your kind words, and if you ever want to chat my email is I hope you have an awesome week ahead!

  4. You are amazing, Kim. I know u might not feel like u r right now- but the way you can articulate your journey and the struggles is something that I know God gave u to do. We are called to share God’s Love- and you are definitely do that- at the place God allowed u in for such a time as this.
    I still want to meet you! 😉 When your up to it. I live 2.5 hours away now in North Jersey- but I used to live in New Holland so I could visit other loved ones while I’m in the area.
    My number is: 610 757-7549 Text me when u feel up to a visit.
    My email is:
    Thanks for your blog today. U have no idea how it has effected me.
    Missy ( hostetter) Burgess

  5. Kim – my heart actually hurt when I read your blog today. I’m so sorry you are experiencing pain of any kind. Even though I’ve never been diagnosed with cancer, I had about 15 years of dealing with headaches 5 or 6 times a week. (This time frame just happened to be when my kids were younger – when I finally went to a doctor and got some meds, I now only experience headaches once in a great while…) but the line that really stuck out for me in your writing was “Pain makes you someone you don’t want to be.” Now, at 57, I realize that my children never saw me as the mother I wanted to be. I did several of the things you mentioned – “…pull away from everyone and everything, interactions are often forced and fake and interacting with people sometimes feels like a chore….. It makes me feel like a diluted version of myself, sometimes just going through the motions.” It haunts me, even though now I feel much better – but still – I wonder – how did I get to be this person I am now? Sure, I don’t have headaches anymore but what is my excuse for not laughing each day? For dancing because of the blessings in my life? I don’t need to live like a prisoner anymore. Thanks for sharing your life with us and reminding us of so much, I don’t know why I’m even sharing this with you – I guess it’s just to reaffirm that your life, your words, your experiences – bring so many of us to places of revelation and hope and also help point us to our only true source of strength. Lifting you and your family in prayer once again. Asking for your pain to be gone, once and for all…. Lord, I pray that pain and sickness have no place or power in Kim’s life. I pray for protection against any disease coming into her body. Touch Kim with Your healing power and restore her to total health. Bring her to a new and glorious normal in her life. I lift her doctor and the procedures she is going to endure in the next few weeks. Grant the doctor wisdom and full knowledge of Kim’s health and I pray that everyone will be amazed by how fully You have made her well – physically, mentally, spiritually. Please Father, let it so. Thank You for the blessing she has been to me, a stranger, as well as to those who know and love her well. Love her well, Lord.

  6. Kim, what you said about chronic pain is so true. I have arthritis and it makes me feel like I can’t do anything at times. But then I think of you and know mine isn’t so bad. I continue to pray for you and hopefully you will get relief from the headaches.

  7. To say that I’m praying and that I love you sounds so hollow….but holding you up to Jesus is all that means anything anyway. I wish this would all just go away for you….hugs.

  8. Sorry to hear the struggle you are going through with all of these headaches. We keep you in our prayers. Let us know if there is anything we can do………………….more food perhaps???? Could we bring you a meal for your family? Let us know if we can assist in that way. You just must feel as tho you are just swimming in all of this never-ending testing, all of this uncertainty. All of this which speaks of a far way away from “normal.” Sending you a big HUG…Adele

  9. You keep being you, talking about your pain. You have a voice out here. You are out here for somebody, we all are. There is purpose in it all. Someone will see meaning in what you are saying because of the beauty in your truthful words. It’s hard as humans to think that we are no here for us. But with God, we never are, we are here for Him.
    Lord, be with Kim and bring her the strength and comfort she needs. Give her the courage to tell her story which is the truth. And use her Lord to show the world what Jesus looks like.

  10. Kim I have dealt with chronic headaches for 19 years now. I am still on a journey to find out the true cause. But reading your blog today touched my heart. Yeah, someone else actually gets what it’s like to have pain that can’t be ‘seen’. I’m so sorry you have to go through this on top of all that you’ve already been through. You open heart to God & your witness to others is awesome. Thanks for continuing to share your heart & your story. Praying for God’s best for you!

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