Living In The “In Between”

I have had a really hard time getting back to writing. One of the lingering side effects of chemo is foggy thinking, lack of focus and inability to concentrate. They call it “chemo brain” and it doesn’t just go away when chemo ends. Chemo is a double edged sword. It heals and it destroys at the same time.

My pathology results after my surgery showed that the invasive ductal carcinoma (IDC), the tumor that was rapidly growing in me, was gone! All that remained was a small DCIS (ductal carcinoma in situ). This is a tumor inside the duct, which chemo doesn’t treat, it must be removed. It was also explained to me to be the origin of the invasive tumor that was rapidly growing outside the duct. All traces of the cancer were removed through surgery. I no longer have any breast tissue left in my body. My breasts were reconstructed using abdominal tissue (fat basically).

So chemo did it’s job and not only dissolved the tumor but all evidence shows it kept any cells from escaping from my breasts and spreading anywhere else in my body, resulting in my breast cancer being staged at 2. I am fortunate. I am blessed. But chemo damage lingers. So I may be considered “cancer free” but I am not yet side effect free.

I am also still undergoing treatment for the full year, due to the type of tumor I had being HER 2 positive. I am receiving a drug called Herceptin. Although it is a targeted therapy drug and not chemo (it targets specific cells for destruction), it still has side effects. One of which is joint pain, which I am now experiencing all the time. I receive this transfusion every 3 weeks, just like chemo, for the full year (17 doses total).

Around 60% of patients on chemo get CIPN (chemo induced peripheral neuropathy). I am in this 60%. 6 months after chemo 30% still experience symptoms that can last from 18 months to 5 years and can even in some cases be permanent. I am 4 months out from chemo and still experiencing CIPN. I pray I will not be in the 30%.

I am also in chemo induced early menopause and because of my age it is highly likely that will be permanent. I experience intense hot flashes and reduced hormonal effects.

So between having chemo brain, neuropathy, hot flashes, lingering fatigue and now joint pain daily, I continue to struggle with healing from the effects of cancer and treatment. I also have nerve sensitivity and blanket numbness over most of my breasts and my hips and abdomen, from my extensive surgery.

My body is foreign to me and still unrecognizable. The reconstruction is not complete yet. I am taking it one step at a time. My next surgery will probably be in late summer. My perspective has shifted in regards to my body after my cousin said to me, “Hey this is your second body, most of us only get one and you were gifted another one!”

I know I’m blessed. I feel fortunate for so many reasons and that makes the acceptance of living with this “newly gifted body,” and these hopefully temporary side effects and pursuing complete healing my goal. So I press on.

I am grateful I was able to keep most of my hair through cold cap therapy. I did loose most of my eyebrows and eyelashes, but all my lost hair is now growing again. I am also recovered from my anemia and feeling much stronger.

I am “in between.” That is my new terminology for where I’m at physically, emotionally and mentally. I am cancer free, but not yet to a place of “normalness,” whatever that may be? When treatments and surgeries and healing is complete and I can feel normal, even if it’s a new kind of normal. I have heard from other survivors that it can take 2-3 years to reach a place where they wake up one day and feel “normal” again.

Emotionally it can be hard, not just because I’m dealing with treatment and physical side effects still, but because not everyone close to me truly gets what I’m still going through. So many people see me as cured and healthy again. I get that, not everyone knows what I experience every day. So mentally I’ve had to adjust my expectations and also understand the average human response in light of my situation. I’m taking one day at a time, with my eyes on the path before me.

My husband has been beyond amazing and continues to be my biggest support. His understanding and compassion toward me is astounding. I can’t say enough about how lucky I am to have him in my life. He gets me and he loves me so well.

The struggle is real through each step of this process. And it is a process. Cancer will not consume me. Treatment will not consume me. Despair and fatigue some days try to consume me, but I have hope beyond all of this!

My hope is in The Lord. My redeemer, my comforter, the rock on which I stand. My trust is in Him.

But you, O LORD, are a shield around me; you are my glory, the one who holds my head high. Psalm 3:3

So I may be “in between” and that’s ok, because my God is right here with me every step of the way. I am never alone. He knows the plan for me, a future full of hope!

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart. I will be found by you,” declares the Lord.

Jeremiah 29:11-14a

I will seek Him with my whole heart. All for His glory. There is hope beyond this!