It hasn’t been the week I expected.
After Sunday morning’s start with neck pain, the Dr. and nurse told me to go to the ER if the pain got a lot worse, or if I had shortness of breath, pain in my arms, etc.
Tuesday morning as I was getting ready, my left arm started hurting from my wrist up to the middle of my bicep. Since I never asked the Dr. what type of arm pain to be concerned about, I called the office. After talking with the nurse for 20 minutes, she said I should go to the ER…not because it was really an emergency, but because things seem to be progressing quickly and if I went to the ER, they would do the CT scan immediately and I wouldn’t have to wait.
I called my neighbor Jen and she drove me up to the ER. Tom met me there. It was a long day of waiting and playing games on our phones. I am totally addicted to playing Yatzee (thanks Else for getting me started on that on Christmas).
My oncologist came to the ER and both Tom and I could tell immediately that he was concerned. The look on Tom’s face changed as soon as he saw Dr. Lung’s concern. No words were needed. I will never forget that moment.
At that point I wasn’t in much pain and I was starting to wonder if I had over reacted and was wasting everyone’s time.
I had a CT scan and the ER Dr. told us it was good news…nothing was broken and no surgery or anything immediate needed to be done. He read the results as an ER Dr. – nothing he could do to help me. He got a phone call in the middle of our conversation and had to step out.
Tom read through the complicated results from the radiologist and it didn’t seem like good news to us. While I didn’t need any help from the ER Dr., it was pretty clear to us that there were more spots and definitely something wrong with C2 in my neck – the reason for the neck pain.
We thanked the Dr. and nurses and headed home, knowing we would follow up with my oncologist that night and verify what we had read.
Our knowledge of medical terms relating to cancer and bones is pretty good and unfortunately we were correct. The cancer has progressed while on treatment, meaning the medication is not working. 🙁 Tom and I really thought I would get at least one good scan showing it had shrunk and the meds were working. This was pretty hard news to hear.
Since I started active treatment again, we have received results of my liquid biopsy test, giving us more details of the type of cancer I have. We now know the specific mutation – PIK3CA – and there is a new drug that came out in 2019 that targets that specific mutation. It’s called Alpelisib. While regular chemo drugs attack all fast growing cells, this targets the specific cells with this mutation. It is used along with the Faslodex shot I am already getting. This is the treatment we have decided to go with next.
It’s a pill which I will take at home. Lots of side effects – who knows which ones I will get. The thought of starting a new drug again makes me scared, sad and very discouraged.
All of this makes me so sad. It seems to be progressing so quickly. I’m having to take pain meds regularly. My neck is stiff. My skin is tender to the tough on most of my back and my left arm and I am itching like crazy. All narcotic pain meds make me itch, even with Benadryl.
Part of me wants to hide under the covers on my bed and not see anyone. Part of me wants to escape somewhere warm with just Tom and try to pretend everything is fine. Part of me wants to grab my girls and never let go. Part of me wants to send movers to our parents houses and pack them up and move them up here tomorrow. Part of me just wants to be done and be in heaven – no more pain, no sadness, no crying, no itching…
It’s hard to not think this is the beginning of the end. I fight off that thought constantly.
One moment at a time…one moment at a time….praying constantly for help to not worry about tomorrow because today has enough worries of it’s own.
Oh, Jennifer. I’m sorry for this discouraging news. I’ll be praying that the new medication is more effective with minimal side effects. Praying for all of you right now.
Oh friend, I am so sorry and saddened for your news. Thank you for being so transparent. Praying the new medication is effective with minimal side effects. I love you
Jennifer, I have no words. Your conflicting emotions you mentioned make so much sense. Praying for you, Tom & the girls!
Oh Jennifer, this news and all that you and Tom and the girls are going through makes me sad and my heart heavy. I appreciate your honesty because it helps when i talk to the Lord about it all. There really are no “right” things to say. Just know that you are in my thoughts regularly. Love from PA.
Oh Jennifer the tears are flowing steadily, my memories of all those thoughts crushed me when I read them. I hurt terribly for you. Know you have my prayers and all my love. Praying God will heal your body and ease your pan and side effects. I pray also that God will comfort and keep you,Tom and the girls strong. I love you Jennifer
Praying for you!!
My heart is heavy for you, will be praying for God to comfort and direct your path. Love to all
Thinking of you.
All week I’ve been thinking of you and praying every time you crossed my mind. I’m so sorry. I can’t seem to formulate the right words…just know that I am praying for you, Tom, and the girls. I love you all.
I’m so sorry Jennifer. Please let me know it goes with the new drug. I am familiar with it, it is actually being researched for off-label use to treat Timothy’s condition. Hugs
Praying for you.
Oh, Jennifer we are so sorry,we we’re hoping and praying for your pain to be less than what it was , and all the treatments would help control this cancer . We think of you daily and pray for you daily . We will remain praying . God Bless you and the family . ❤️
Pondering you and praying for you and your family time tonight. The Lord holds you close.
I continue to pray for you.
Prayers, prayers, prayers and a while bunch of love friend..
Oh dear. Prayers for you, Tom and the girls. You are one of the strongest people I know.
Love to all
Oh dear friend! My heart aches for all of you… Praying for you every time God reminds me and now will bring these specifics to the “Great Physician” who knows every detail of our lives and loves you even more than all of us do… Please holler if we can do anything for any of you!
Oh dear Jennifer. Can’t even imagine how discouraged you must be. Praying for the new drug to WORK and for a miracle that the side effects, if any will be mild . Big hugs and much love being sent your way.
Jennifer, I’m so sorry. This is so beautifully written and so sad to read. My heart aches for you. We will continue to pray that your pain is lessened, the itchiness subsides, the new drug works and that your one moments at a time are sweet and filled with so much love. Xo
You know God is with you and you are covered with prayer. God will give you the courage and the strength to fight the pain, the discouragement and the fear. Hoping you can find a peace in the midst of the pain and the unknown. You and your family are so loved. Prayerfully
My heart aches for you Jennifer. Praying for you and your family.
I don’t know how you can handle all of this-outside of knowing that you lean on Jesus and He gets you through. I will keep praying that He will have mercy on you and give you the miracle (through Divine intervention and/or doctors/medicine) you long for. Love you.
I am so sorry, Jennifer. My heart goes out to you and Tom especially Tom since I’ve walked a similar road with Hugo. I’ll be praying that this new drug works really well for you.
I’m thankful you have God to walk this road with you.
Jennifer- I truly can’t imagine how you are feeling. I pray for you often and trust that He is in charge even in this most difficult time. It’s almost 3am and still awake so I read a devotion that referenced this verse. Then I read your email. I believe God is reminding you (us) that nothing is too hard for Him. He will care for you and your family. Praying that this new drug will work without many side effects.
“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”
2 Corinthians 12:9 ESV
Love Denise
Dearest Jennifer,
My heart is heavy with your speaking that “it” has returned! As cruel as Cancer is, it can only go just so far. It’s God who’s really in control here. I see God has gone before you and given knowledge of how to treat this kind of cancer, so it can destroy the targeted areas. My heartache leads me to pray for His mercy towards you. May today He fill your body will peace, hope, strength and joy knowing you are a living sacrifice. You’ve accepted this path and are living it before us with authenticity. We can see how your faith in Him and your circumstances in this life are not in vain. May you “radiate” in His Light and dispel darkness wherever you should go.
Praying for today’s strength to persevere with God’s grace
Marilee ❤️
Jen, I am so sorry to hear this. I had a biopsy over Christmas which turned out well but as I was going through all the waiting, I thought of you many times and prayed for you when the Lord brought you to my mind. Now I know why the Lord brought you to my mind. The emotions and thoughts you are experiencing help me to know how to pray for the Spirit to encourage you. Please know that there are prayers and love all the way from Thailand being lifted up to our Heavenly Father for you, Tom, and your precious girls!
Love,
Jen Janes
I can only pray for you. Really want to do more but what? God is trustworthy and while at times it seems like he abandons us, He is always right there with us. I am continuing to pray for you and Tom and the girls.
Praying for complete healing and peace for all of you that only comes from Jesus
Oh Jennifer. So sad when reading your post. Thank you for the information you let us know. Our great God hears you and I pray for that miracle He may extend to you. Praying for this new treatment to work if it is His will. Love ❤️ to you all.
Praying, Praying and Praying more and knowing that God hears all our prayers and knows the desires of your heart. With each prayer we are sending lots of love and warm hugs.❤️❤️❤️
Jennifer, you are so eloquent and I am so sorry for this. I will be praying for all of you, for all of it.
I’m sending you lots of love and light to shine through the darkness and doubt. <3
Jennifer I’m so sorry for the discouraging news. Praying that the side affects to the new medication will be minimal and the pain and itching will go away. Praying also that His grace, comfort, love and peace will sustain you through it all.
Love,
Jan Vassil
You are an incredible woman that inspires and loves on people everyday. My heart breaks for your and your family’s pain. My heart is more encouraged and opened since meeting and getting to know you. Keep true to who you are you are!
Praying, praying and praying for you. May Jesus be your healing and comfort in your pain, worry and sadness. May He fiercely guard your heart and your mind with His perfect peace ❤️