My Diagnosis with Metastatic Inflammatory Breast Cancer (IBC)

My Diagnosis with Metastatic Inflammatory Breast Cancer (IBC)

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Finding a Lump

 

 

I remember when I found the lump in my left breast. I was breastfeeding my then 1 year old daughter, London. It was a small lump. I know that I told myself it was another clogged milk duct. I had several during my season of breastfeeding London. But this one WAS different. It was on the inside part of my breast, whereas the previous clogged ducts had been on the outside. That tiny voice in the back of my mind said, “this is strange”. But with the busyness of life, doing the mom thing, the wife thing and trying to get back into shape, I pushed those negative thoughts aside. I always had a knack for being paranoid and worried about things that ended up being nothing. I refused to spiral out about a silly clogged milk duct. Even though this one was a bit different from the others.

Over the next few weeks after I found the lump, it began to get bigger and more painful. I didn’t want to go to the doctor. We didn’t have insurance after both my husband and I were  laid off of work the previous year. My husband had started a business and we were waiting for things to pick up before getting insurance. We were both incredibly healthy and never needed to go to the doctor.  We figured we could make do until it was feasible to purchase insurance.  The thought of forking over some ridiculous amount of money only to be told that the lump was just a clogged milk duct made me sick. So I decided to keep applying warm compresses and wait another week. I even Googled what it could be…..aside from cancer, of course. Google led me to a forum full of women talking about their large benign milk cysts called galactoceles. I grabbed onto that idea with all of my heart. That was absolutely what I had! Sure it was rare. But it met most of the criteria of what I was dealing with.

Another week passed. Was this thing getting even bigger?? I prayed in the shower and asked God to tell me what it really was. I asked Him to make it go away because I felt like maybe it was something serious. That night I asked my husband to feel the lump in my breast. I told him I was afraid. 

Kevin reasoned with me that it was important to get peace of mind and to just go to the doctor. “Don’t worry about the money”, he said. What’s important was getting it checked out so I wouldn’t have to wonder what it was anymore.

My doctor was right on board with me about this thing being a galactocele. He even showed me a diagram of what it most likely looked like and how the milk ducts could create such an anomaly. But just to be sure he said, “Let’s go ahead and get a diagnostic mammogram since you’re almost 40. But I really don’t think it’s cancer or anything like that”. 

“Great!” I said. But inside I was so irritated that I was going to have pay even more money toward this nothing burger. 

 

Diagnosis

 

I had a mammogram scheduled for the following week in the same building as my OBGYN. But I wanted to be at a location closer to home so I rescheduled for another week after that at the office near where I lived so I wouldn’t have to drive an hour there and back. 

Two weeks later I had my diagnostic mammogram along with an ultrasound. Afterward, I sat in the dark room that the ultrasound had been performed. I sat on the exam table and waited for the tech and the radiologist to come talk to me about their findings. I had put my bra and shirt back on and was ready to get home so Kevin and I could figure out dinner. Maybe Chick fil a? I didn’t really feel like cooking that night. This appointment had really taken up way too much time as it was. I was so tired all the time and the idea of adding cooking dinner alongside this appointment was just too draining to consider. The tech and the radiologist walked in as I was sitting there comtemplating my dinner plans. “Oh, I should have told you to leave your shirt and bra off” the radiologist said. 

“Oh, I’m sorry”, I said. Embarrassed at having hurriedly thrown my clothes back on to avoid the awkwardness of laying around with just a thin cloth over my boobs.

“Oh please don’t apologize. We can just work around your bra. I want to do another ultrasound and discuss our findings,” she said. 

She was being so nice.

I unclasped my bra and laid back on the bed and she did as she said she would and worked around my bra with the little ultrasound wand. I looked blankly at the black and white screen full of fuzzy riddles and puzzles that only the professionals can comprehend. We made some small talk and then she was finished and I wiped off the jelly remnants with the coarse towel she handed me. 

I sat up and could not for the life of me get my bra to clasp. Reaching behind yourself and trying to maneuver that mechanism is a task! My radiologist fired up my mammogram results on a screen in front of me. It illuminated the dark room and I could clearly identify my boob in all it’s glory on the screen. She began pointing out the streaks and an even larger glob with streaks near what I was pretty sure was my nipple. She was explaining that this was the lump as I awkwardly arched and reached for the ever escaping clasp. Almost….almost…. And then the two strips would evade one another. My bra was determined to keep me literally hanging as this woman told me about my galactocele. 

I finally just gave up and let my bra go about being loose and free so she didn’t think I was being rude. 

As I let the bra go, she said it. 

“This definitely looks like a type of cancer”. 

It’s like everything that I ever thought was important was wrapped up in that stupid bra and its unwillingness to clasp. And just like that I had to just let it all go. 

A type of cancer. Definitely. 

I felt the tears pouring out of my eyes even before I fully comprehended what she had said. Something that never forgets how to work even in the moments when I try the hardest to make it stop…those tears.

I couldn’t even tell you what she said after that. Something about what to do or how to do it. But I will always remember when she stopped being the radiologist telling me the worst news of my life and looked me in my eyes and said, “I’m telling you this because as a woman, I would want to know. I wouldn’t want anyone to tell me they weren’t sure if they really were sure.” Then she said with urgency, “But you can come back from this. I’ve seen women come back from this”. 

I wanted to come back from it.

But at that moment I felt like I was drowning. 

After she left, it was just me and my ultrasound tech. She was trying to explain the biopsy I needed to get. I looked at her and she looked at me. I must have looked pretty pitiful because she said, “Now you’re going to make me cry.” And then she hugged me. She hugged me tightly. The beautiful gesture of care and love for a stranger was in that embrace, as I felt the tears pouring out of me and I struggled not to start sobbing. The question that practically screamed in my mind, “Why did I have so many children God if I was going to get cancer?” 

Irrational. But it filled me mind.

“You’re going to get through this,” my ultrasound tech said intensely. She looked so sure.

I left the office fighting back hysterical sobs. I couldn’t get to my car fast enough. I needed to cry. To really cry. Not that slow trickle of tears. No, I needed to get that ugly cry like I never needed it before. 

When I finally sat in my driver seat and closed the door, I let loose and wept. I cried for the news I was going to have to give to Kevin. My sweet husband. He’s always been a glass half full guy. When I first met him I called him my ray of sunshine because from the moment he stepped into my life he has parted my dreary dark clouds of negative thoughts with his smile, his laugh, his ability to make me laugh no matter my mood. I was going to have to break his heart just like mine with the news of this unknown “type of cancer”. Oh how I cried for everything we had and everything that would be forever changed.

After I had calmed down as much as I could, I made the call to my husband. I repeated the words the radiologist gave me back to him. I told him that they said they believed I definitely have a type of cancer. At first he was irritated by the incompetence. He said, “What? No way.” But I explained through tears everything they had said and shown me. The tears and sadness I heard in his voice broke my heart. “It’s going to be okay. God is with us.” He said quietly.  I felt grief over having to tell him the news but it was also mixed with the relief of not being alone anymore with this horrible information. I had my partner. And he was right, God was with us. He IS with us. 

 

The Next Steps

Everything after that was a roller coaster of telling family and friends the news, doctors appointments, hoops to jump through to get emergency insurance in place and more moments of hurry up and wait that I can ever describe. 

The first thing that was done after the news of my mammogram was a biopsy to confirm and fully diagnose exactly what type of cancer I had. I still held a sliver of hope that it was some sort of mistake. But as I sat in my OBGYN’s office after he had rushed the results, it all came down to the final result and truth. Before I had even sat down he handed me a box of tissues. (I still to this day feel like there could have been a better way to indicate bad news is coming.) So, I knew before the words even came out that it was just as my radiologist had said, “definitely a type of cancer”. My doctor looked away and then looked at me and said, “It’s cancer. I’m sorry”. More tears out of me. But I looked at him and felt so sorry for him. He had felt so sure that it was a galactocele. But it wasn’t. I was wrong. He was wrong. It was cancer. 

I cried but felt in my heart I had to say something absolutely true. I had to speak speak out loud because the enemy was surrounding me. I could feel death, hopelessness and grief in that room. 

“God is good ALL the time,” I said out loud in that quiet room. Not because I’m so good and holy. I said it because I was fighting the enemy of my soul in that moment. I said it through clenched teeth, holding back sobs. But I said it loud, clear and with every last bit of confidence in my heart. This was spiritual warfare! I looked at my doctor. He did not look sure about what I had just said. But I was sure and I knew that the truth needed to be said and heard in that moment. God is good all the time. Even when our hearts our broken. Even when nothing makes sense. His goodness and the knowledge of His goodness is water to our thirsty souls. He promises in Romans 8:28 “to work all things out for good for those who love Him and are called according to His purpose”. 

The days and weeks following my diagnosis were excruciating. Yet, when I look back, it was also all a blur. My whole life had been turned upside down. But God’s fingerprints are all over those memories I have. When I think about how we had no idea how we were going to get medical coverage with no insurance, God directed our path to the resources that we needed. I remember the only thing I could think to do was write down tasks to complete on a to do list and work that list every day. Every day I would make phone calls and every day I would wait for those calls to be returned because no one actually answers phones directly anymore. It’s always a series of leaving messages and hoping the call will be returned that same day. Many times I had to wait until the next day or the day after that to hear back. 

Official Diagnosis

By week three after my biopsy I was able to get a CT scan and bone scan done. I finally was fully diagnosed at the end of August. Four weeks after I was told I had some form of breast cancer I was told that I had Inflammatory Breast Cancer (IBC) that had metastesized to my liver and that it was HER2 +, ER/PR -.  It was surreal to go from a healthy 39 year old woman, who had never had more than an occasional cold or flu, to a stage 4 IBC patient. But there we were. By the time I had received the news that I was in stage 4, I had processed the fact that I had cancer. I had surrendered everything to God at that point. But oh how I prayed that I was not metastatic. But God’s plans are usually different from our own. I found out that I was stage 4 early one morning while checking my online medical portal. I had just woken up and grabbed my phone out of habit to see what my emails had in store for me. I read the CT report while my husband slept beside me. “Innumerable hypoenhancing masses” on my liver, with the two largest being 5.2 cm and 2 x 2 cm. I wasn’t shocked but I also didn’t know it was coming either. I prayed. I asked God to help me to trust Him and to not be afraid. Fear really wanted to come at me. Thoughts of death and the possibility of leaving my children without a mother and my husband without his wife crept into my mind.

The Peace That Surpasses All Understanding

But a peace that I can’t even describe came over me. I wasn’t terrified. I wasn’t numb. I just felt peace. I knew that God is in control and that whatever was happening, it wasn’t a shock to Him. He knew this was where I would be at that point in my life before I was even born. He knew the plans He would have for me. And I trust His plan. I trusted Him in that moment and in many moments since then when the enemy has tried to put fear in my heart. There is nothing like the peace of surrendering everything to the King of the universe and knowing that whatever happens, He is in control. I have come to know in my heart of hearts that even IF death were to win the battle of my physical existence on this earth, there is so much more to life than this. In 1 Thessalonians 4:15-18 it says,

“For this we say to you by the word of the Lord, that we who are alive and remain until the coming of the Lord will by no means precede those who are asleep. For the Lord Himself will descend from heaven with a shout, with the voice of an archangel, and with the trumpet of God. And the dead in Christ will rise first. Then we who are alive and remain shall be caught up together with them in the clouds to meet the Lord in the air. And thus we shall always be with the Lord. Therefore comfort one another with these words.” 

1 Thessalonians 4:15-18

We’re to comfort each other with those words. And what a comfort they have been to me. To know that death isn’t the end. There is so much more to life than the here and now. And to know that, “to be absent from the body is to be present with the Lord” according to 2 Corinthians 5:8 means there is no fear of death for those who love Christ. There is so much peace to be offered. 

But I felt that God pulled me to look even beyond the comfort of knowing that death isn’t the end. To not fear death or even the process of dying is a gift from the Lord. But He kept showing me through various people I encountered as well as scriptures I would run across that I was to hold on to hope of being around for the long run. One scripture that really drove that home was when I was in a season of too much focus on the understanding that death comes to us all and it would be okay if I died. It was like the enemy was twisting the truth and telling me that I was going to die. I simply accepted it without considering that God actually decides when it’s my time. Not science, not statistics and certainly not the enemy. The scripture that God showed me was Psalm 27:13,

“I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living”.

Psalm 27:13

Because of that scripture, God snapped me out of the hyper focus on death and when exactly my time would come. He wouldn’t allow the enemy to try and trick me into giving up. Just because it’s all in God’s hands doesn’t mean we’re to be apathetic. If He calls us to fight for our life, then we fight. I know in my heart that God has called me and many others who are battling cancer to fight. And He shows us exactly how to do just that when we seek Him in prayer and supplication. 

God is good all the time. That is the Word of my life. He is with us in the valley of the shadow of death. And while we are on this planet we will be faced with tribulation, pain and really just plain scary stuff. But He promises that He will never leave us nor forsake us. He works out all things for good for those who love Him. Oh how I love Him. Jesus Christ makes it to where we don’t have to be afraid. We don’t have to worry. We don’t have to agonize over the things we can’t control. He sets us free. By His stripes we are healed. His blood covers our sin and gives us access to the heavenly Father. What a gift that is if we let it sink in. He brings the ultimate peace that surpasses all understanding. Speak the truth of God into the darkness that threatens to steal your life and the enemy of your soul will no longer have a hold on you. If God, the Creator of heaven and earth, is for you….who can possibly be against you?

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This Post Has 8 Comments

  1. Cindy Stelzer

    Kamie, thank you for so selflessly sharing your breast cancer journey. I have no doubt this blog will reach many people and give them strength, hope and peace. I can hardly wait for the next chapter.

    1. Kamie

      Thank you! I pray that it does! 🩷

  2. Lianne

    I’m not crying, you’re crying. So beautiful.

  3. Linda Langley

    Kamie, you are a strong, Godly woman! God is good ALL the time, as you stated. God has a beautiful plan to work through you and your sharing this journey. You don’t know me; but, I was Kevin’s third grade teacher. You are blessed with a strong and supportive husband. God bless you both and your darling children.

    1. Kamie

      Thank you Linda! I do feel so very blessed to have my husband. He is my rock 🙂

  4. Jaton Liner

    You are amazing, faithful, inspiring and so full of His Grace. I am Blessed He brought you into my world as are your fellow sisters battling this disease. I love you Kamie

    1. Kamie

      Thank you Jaton! Love you!