“Just wait until you are through chemo, then you’ll feel better.”

IMG_0529Maybe for some, but that wasn’t my journey.

The school year following my marriage, my mom died, and having surgery was really tough. Work started feeling more and more like a war zone with an increasingly nasty, unpredictable and vicious administration that left me feeling bullied and with PTSD type responses of panic and anxiety. Here’s the quick synopsis: After having surgery in 2012, getting sick with cellulitis, having rampant infection and necrosis of my wounds (which was a devastating experience), I got sick and weaker. After that, finding cancer just felt increasingly surreal which was in October 2012.

I had the cancer and did as I was supposed to do. It was Ovarian and had spread to the Uterus, or maybe it was the other way around, I really don’t remember. I had the hysterectomy, they didn’t remove my lymph nodes because they thought it was contained in the uterus and they pulled my ovaries.  To make things worse, post-hysterectomy, my hormone change threw me into a menopause that I thought I had already experienced. In 2007, my hormone levels were supposedly post-menopausal. I was officially through menopause. But, after the hysterectomy, I started having hot flashes and emotional responses. I talked with the surgeon who was my cutter and her response was that, “oh, those ovaries must have still being doing something, it happens to women sometimes.” That. Totally. Sucked. And, oh, since it was ovarian cancer, they needed to do radiation therapy and chemo. That, I hadn’t expected. I thought we were done with the hysterectomy. Nope. Not even close to finished.

Radiation was okay until the very nearly last one. That one burned like fire. I don’t think things have ever quite recovered. (Sadly, they also don’t really mention that nasty little possibility about some folks’ love-life post hysterectomy – it can hurt like hell! And, since I had cancer, Estrogen is/was out, so no hormonal replacement for me.) Just keeping it real, folks. Not a fun reality but working on it, or at least thinking about working on it.

As for chemo,  I briefly posted (can it really be two years ago since that started??) that the beginning of chemo itself wasn’t too horrible. I did have a ‘chemo headache’ migraine where my head felt too big for my skull. I also had a bit of nausea as things went on, but, that was nothing compared to my other side effects.  That’s where we are catching up from the time I last blogged.

During chemo, It just kept getting more difficult to function. I was repeating myself.  I started panicking. I felt depressed. I couldn’t focus on reading and was easily distracted. I also felt misunderstood, and emotional; when things went wrong and I thought I was being pretty logically reasonable I shouldn’t have had to be feeling like this…..ugh. Then my Oncologist let me know that ‘Chemo Brain’ is an actual real thing. There it was. I had it. The crazy thing – no one knows who will or won’t get it, and they don’t know how bad it will be or not, and they don’t know if the brain recovers or not, either. My reality was…nope. I felt worse after chemo was over. I felt disoriented and confused, like I’d lost a good portion of my brain cells, and slowly it dawned on me: When I had chemo, the poison that was running through my veins to kill the cancer also killed *a lot* of things that I’d been relying on in life.

Post-chemo my body kept continuing to crap out on me. My pain levels increased, migraines became even more frequent and my joints hurt. Additionally, my auto-immune system had decreased to nothing by the end of chemo and I had gotten a NASTY virus running through my system that left me with rampant diarrhea that continued even after the virus was gone completely. Gluten intolerance seemed ruled out (however I have heard since then that the blood test is not exactly accurate) and IBS seemed an initial consensus, but I’m still going through finding out any other reasons for it or maybe I have some sort of leaky gut or who knows what. My next colonoscopy and EGD will be this coming weekend. Who knows, it might be all nutrition choices, it might be a combination of things. But we shall see. In any case, I’m still alive and kicking.

Since chemo, I have permanent lymphedema. I have compression garments, I have the Flowtron machine with the thigh high booties, I sleep with a triangle wedge to keep my legs elevated, but I still have it, plus, half the time I can’t sleep and never without some kind of med. Other side effects of chemo are that I had nerve damage and increased pain from arthritis, back pain, neck pain, and muscle swelling. Migraines are continual, and if my head doesn’t hurt, something else does. If I exercise, I pay for it. But I still need to. My bones are getting weaker every year and weight bearing exercise helps prevent further incursions of osteoporosis which I already have in my wrists as well as my hip and spine. Speaking of hips, I have right hip plus knee pain. Half the time my fingers get numb as a result of neuropathy.

After chemo, I felt punch drunk after a few too many hits. I felt like Rocky with my eyes swelled shut, beaten up yelling, “Adriaaaan”, but I didn’t experience the immediate comeback planned in the script. This was not a make believe movie scene. I was down and out for the count, l  felt like a total and complete failure who didn’t know who I was, compared to who I used to be, but still better off than who I used to be before that. I still believed that God was in control, but I was getting pretty tired of myself. After chemo, I felt so tired, fat, and depressed. I had fear and loathing of what I was becoming or falling back into, depending how I looked at it, and  I felt about as smart as a snail. I talked too much, I went from high to low in seconds, and started basing my self-perception on how I felt others were viewing me. In a word, the past two years were hell inside of me. All of my negative self-doubts circled about my confused brain, aided by the attacks of the enemy of our souls who, like a vulture, circles ready to steal, kill, and destroy whatever he can.

But God.

God has brought friends and angels in ways that he shows me he cares for me. Last August I was feeling particularly low one day. I went and talked with someone at church asking for prayer and I remembered leaving feeling like an utter and complete failure. Not even ten minutes later, a friend, Kat, whom I’ve not spoken with in years called me, and said, “Jill, God wants you to know you are NOT a failure.” That was an amazing encouragement for both of us and sustained me for weeks.

I know God loves me and he hasn’t given up on me. I am 50 years old and still learning. I have learned that I can choose the thoughts I allow access to my brain. I am NOT my thoughts. I don’t have to allow them all to shake around in my brain like a terrier shaking a squeaky toy.

I’m certain God dropped the idea of a service dog into my heart. My Oncologist and other doctors agreed a service animal would help with my disabilities. We got a mix of miniature Poodle and Wheaten Terrier. Harry was love at first sight for me and my husband. He wasn’t the cutest one of the three pups, but he wrapped us both around his paw with a lick and a snuggle. Thankfully, he is VERY smart, as well as adorably cute (even if his brother Joey was a tad, just a tad cuter, initially.) He helps me in a myriad number of ways. He picks up things when I can’t feel my fingers, brings in the paper or other things I point to, encourages me to get out and walk a little, helps me to open the door, to get out of bed, and while I was working on training him, he gave me a tiny bit of purpose and something else to think about. Harry brings love and contentment and joy to me. At times, I have felt the presence of God embodied by three furry bodies next to mine while lying on my bed, and felt him whisper to me how much he loves me. I have the simple joy of sitting in my backyard and seeing the dog and cat chase each other. Gracie and Harry are good friends while Thomas and Harry tolerate each other. My world has become very small. That’s ok. I’m enjoying it. The wind in the trees soothes me, the warm sun feels good on my “old” bones until the time of year when it’s a bit too hot for even this Seattle transplant. Yes, I know age is relative, and maturity isn’t my strongest point, but I do like enjoying life in all of it’s adventure. I’m just readier than I used to be to see Jesus as a part of the biggest adventure of my life. Further up and Further in. Until God wants me, Breathing is a good thing.

God is teaching me that his way is the reverse of a negative spiral which is my ‘old school’ way of reacting to things. I have to keep believing even when everything around me points to chaos. God says, “Behold, I am doing a new thing; do you not yet perceive it? I am bringing a way in the wilderness and streams in the desert.” I’ll take it. I know that God is true, he is faithful, and he is loving.

My whole idea for this blog was about being happy in moments by choice. It was to become healthy,  to embrace healthy living and thinking.  It’s been a long detour, but I think I am there again, to feel vulnerable, look at new ways of thinking and be real with uncomfortable things; to continue being real without whining or complaining or venting. I choose to be happy because it makes me healthy. I can be a positive influence without being a plastic barbie princess or a woe is me victim. I am a victor, not a victim. I am a daughter of the King and he sees me as precious.

I started going to Celebrate Recovery – a place for people with hurts, hangups, and habits. I started in October 2014, and then went back in November 2014 and have continued since then. I have met some other women who have faced obstacles with courage. Things can change. I can change. It’s not too late. I am looking for miracles. Inside me is more important than the outside of me. I want to be changed from the inside out which is the promise I have always been given.

I feel hope now. I am hoping that 2015 will be the best year in a long time. I am looking forward to progress, not perfection. I am committed to seeing fruit in my life. Maybe I can use my mess to help someone else. I once was lost, but now I’m found, was blind but now I see. How precious did that grace appear, the hour I started to believe again. God has a plan for me. I believe it. I believe in him. The best days are ahead of me. It may not be different physically, but it can be inside me.

I’ll be back. I think writing helps. I know I have something to say. Hopefully it well help someone.

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6 thoughts on ““Just wait until you are through chemo, then you’ll feel better.”

  1. Great post, so glad you wrote it.
    You know that writing for some is a spiritual gift, and like all his gifts, it shows God’s love and faithfulness.
    Keep using your blog as an outlet for your gift.
    Hugs

  2. Love you Jill!💞 Your tenacity and spirit have always amazed me. You are gifted in so many ways and your faith in God is so beautiful and inspiring.
    So glad the the Lord made us sisters!

  3. Denise Naeseth Schulz

    Thank you for writing this, I have been through a similar situation and have often thought maybe I would have been better off dead, but in reading you message it makes better sense of what chemo, radiation, death of my dad, and mom, extreme chronic pain and how living life in the dark can certainly drag a person to depression, panic, anxiety and how others perceive me and how I perceive myself after weight gain, extreme hot flashes that break out anytime like standing in line to pay for groceries or whatever and the other person looks at you and I have sweat running down my face like someone poured water over my head and nd how embarrassed I feel at that moment. So thank you for letting me know that there are others that are like me in ways and my wish that I could be more like you with acceptance or feeling worthy that God still loves me and will be there if I will let him. I look forward to hearing from you again.

    • Thank you so much for writing me about writing about this. It helps to know I touched someone else! I know that if you carry the name Naeseth, you are, without doubt, a tenacious person, and can get through the dark times. Think about Norway….in the winter…eating lutefisk.

      I am learning (slowly, I’m a bit stubborn), that a lack of control over circumstances doesn’t have to equate a lack of peace. I pray that you can reach out to our Father God who certainly has had his hand on your life, and will be there for you if you ask him to make himself known. He does that kind of thing. I am glad to have been able to give you a sense that others have experienced what you have gone through. Being alive is better than leaving at the wrong time and the Father is the only one who knows when that really should be.

  4. John Bivens

    Jill, Thank you for writing this and being so open and honest about the hardest things in your life. You have a very special thing about you that I did not realize until you found me out when I was in hiding from a very bad accident. I made sure no one knew where I was at because I was so down and so blue. I didn’t want anyone to see me like that. I couldn’t walk, couldn’t care for myself, I lost so much weight. I was told I’d be in a wheel chair for 1 year, best case scenario 6 months? Are you kidding me? While I was in my secret rehab hospital I’m doing the best I can to get my arm’s around that. I was working my ass off doing everything they told me to do if I planed to walk again. The pain, the depression, the hopeless feelings I was dealing with really had me thinking bad thoughts. I mean really bad thoughts. C-mon John, you can’t kill yourself, besides you have daughters, people that love you, what will your friends think? My head was in a very dark place. Then the phone rang in my room, What? No one knows I’m here, I saw to that, who would be calling me? When I picked up that phone and heard your voice on the other end “Hi John, it’s Jill. I came to bring you a little care package. I right here at the front desk but they said your not seeing anyone, I’ll just leave it with them, feel better and I’ll see you soon”. Then you told me, “Nobody knew what Rehab hospital you were in so I just called ALL of them until I found you”. Jill, you have no idea, and I’m sorry I haven’t told you this before, but that crazy tenacious act of you finding me, reminded me, of just how much God was working in my life from the moment the truck pulled out in front of me. I didn’t know how faithful you were, didn’t know you walked in the light of Christ the entire time I was watching you go through the things you just described. I didn’t know how strong your relationship with God was. But it made since to me as I opened the care package and was smiling and laughing at the dumb little/big stuff animal snakes I pulled out of the bag, reading the thoughtful cards you and Doug sent. When I opened that care package Jill, I felt God smiling down on me and I was instantly reminded, I’m here for you too John. I starting putting God first and changing the way I was thinking. I got out of that chair in 6 weeks Jill. You were and you still are a very big inspiration to me. I watched you Jill go through that stuff, and in spite of what others may have been saying about you, you didn’t for one moment let it change your course. I think of you often as I am still recovering from what was the worst day of my life and yet, because I now have a relationship with God in my life, was the best day of my life. Thank you, Thank you, Thank you, for being you.

    John

    • Wow, John, I am blessed to hear your response. I’m so glad that God was able to use me in that moment for you. He’s able to do more than we can ask or imagine, and he’s got your back – and all the rest of you. You, my friend, are a miracle man. I’ve appreciated your positive spirit after that horrific day, and how well you’ve been doing. Jesus is blessing me in so many ways for just being open about that tough time in my own life. Thank you for taking the time to share!!!!!

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