Chemotherapy Round 1: The Shocking Truth

 The first day of chemo was manageable, scary, emotionally taxing, and exhausting. I spent nine hours sitting on dry ice at -30 degrees to protect myself from neuropathy and permanent hair loss, from one of the two drugs given (Docetaxel), and by the end, I was exhausted. The best part of the day was finally curling up in the warmth and sleeping through most of the night.

The next day brought a slight nausea, but nothing I couldn't handle. Oddly enough, the only thing that helped was pickle juice. Gavin and I joked that it was like I was in the first trimester of pregnancy. For two days straight, I craved pickles and sipped the juice, and it worked better than any nausea medication.

By Saturday, the side effects began to shift. The nurses had warned me that the injection to boost my white blood cells might cause bone pain, so when I felt achy, like I was coming down with the flu, I wasn't too worried. But then I noticed my jawbone aching in a way that felt different.

By Sunday, the ache had turned into something much worse. It was like a troll had taken up residence in my jaw and was jabbing me with a cattle prod, sending sharp, electric shocks through my face, from my jaw to my ear, into my temple, behind my eye, and down my jawline. The pain was startling and brought me to my knees a few times. As the hours passed, the intensity only grew. At 3:51 a.m., unable to bear it, I messaged the patient portal, hoping someone would see it first thing in the morning. I sat in the dark, icing my face, tears rolling down my cheeks, trying not to move my jaw or wake Gavin, as there was nothing he could do anyway. 

Monday was challenging. The pain spiked whenever I ate, smiled, or talked. I made three calls, left multiple messages, and still received no response. Finally, at 5:00 p.m., I received a note: “Stop taking Zofran. It can cause migraines.”

The problem? I hadn't taken Zofran since day two, and this was the worst migraine I had ever experienced. I messaged back, but no one responded.

Wrapped in ice between work meetings.

That night, I tossed and turned, wrapped my face in ice, and crawled to get Tylenol and Motrin. At one point, I even tried Tylenol Cold & Flu, thinking maybe it was sinus-related, since the shocks were tearing through my ears and eyes. 

Finally, I gave up the hope of sleep and went to meet Jesus on the back porch. I spent a few hours just praising Him through tears and interceding for the people on my prayer list. As I sat crying and talking with Him about suffering, the pain became manageable, and I recognized the goodness of the pain in life. 

Enduring suffering is part of the human experience, and it is one our Savior knows well. This night, I felt His arms around me, His comfort and hope, even if He doesn't take the suffering away, He will sit with me in it. I spoke into the starry night, all the ways I was grateful for all the beautiful blessings in my life. (Just to name a few)

• My family and friends, whom I love so deeply, have showered me with their support and prayers in this journey. 
• The purpose He instilled in me to love others through education and prayer
• Our home and the peace it brings to us and to others who visit
• The ability to go on early morning walks with littles in my life 
• A God who desires a personal relationship, not a religious interaction. 

  

  12 miles of walking with this little guy this week.

Oh, Jesus is so incredibly loving, and having hope in His healing power breaks the chains and strongholds the devil desires to have over my life. I recognized that finding joy in all circumstances allows you to fall deeper in love with Jesus. The sweet time with Jesus was the most liberating, as it gave me relief from holding everything in, and I was able to see the goodness of His love in the midst of the pain. It also gave me the courage to take on one more day, regardless of the challenges I faced. The hope in Jesus gave me the strength and wisdom to navigate the next steps in my heart and in my care. 

Tuesday morning, I called and messaged my care team again. A nurse promised they'd send in a pain prescription,  but they faxed it to the base pharmacy, which doesn't accept faxes. By the time they resent it electronically, the pharmacy had already closed.

Rocking the ice wrap to ward against the electroshock therapy!

My husband and I knew we couldn't wait any longer for medical treatment and some answers. Even though my white blood cell count was dangerously low, we decided to risk the ER.

Thank God for the ER doctor. He was kind, compassionate, and thorough. After his exam, he gave me an answer: neuropathy of the trigeminal nerve, which I would learn through research, is a very rare side effect of the chemo drug docetaxel. He prescribed a medication specifically for nerve pain, and for the first time in days, I felt some relief for about 4 hours.

 When I finally spoke with my oncologist the next day, he admitted that he had never seen this happen before, due to its rare nature. 

• Only about 5% of patients on docetaxel develop neuropathy of the cranial nerves.
• Developing it in the cranial nerves after only one dose is rarer still.
• 30–50% of those affected are permanently damaged.
• If you stay on the drug after neuropathy begins, the odds of permanent damage climb to 100%.

The oncologist is revising my treatment plan, which we will discuss next week. He believes it is so rare it was an allergic-type reaction, so docetaxel may no longer be an option for me.

But what I heard most clearly through all of that was... Maybe I won't have to sit wrapped in dry ice for 9 hours again. That miserable freezing was only because of this one drug, and now, I may never have to do it again. Fingers-crossed!!

I know that we are all facing things that hurt and cause us to question if we are seen. If you find yourself in pain, grieving, or suffering in any way, I encourage you to read Psalm 42. It has been so encouraging to me this week. It helps you to focus on God's goodness, not on your weakness. 

“As the deer pants for water so I long for you, O God. I thirst for God, the living God.”(Psalm 42:1-2) 

My hope is that we are all thirsty for Jesus this week.  That we need Him more today than yesterday, and we recognize our need for Him in our suffering and in our joy.  

“Why am I discouraged? Why so sad? I will put my hope in God! I will praise Him again - my Savior and my God! Now I am deeply discouraged but I will remember your kindness.” (Psalm 42:1-2;5-6)

If you find yourself feeling you lack the strength to overcome your pain or you are lonely, exhausted from trying to do too much, or feel like you don’t belong, may you put your hope in Jesus and make a list of all the goodness you have in your life. A gratitude journal or simply stating out loud what you are thankful for can remind you of how much you have. If you need something to be thankful for, be grateful for a God who sees you, sits beside you, and wraps you in His love.