Life & Health

Contemplating Chemotherapy: Round 2 – What If It Works?

October 10, 2016

Train to VeniceOn Wednesday I will be heading to MD Anderson in Houston to have my first CT scan since I started chemo. On Thursday I’ll find out the results as I meet with my oncologist. The hope is that we’ll see that my tumor has stopped growing, or at least slowed in its growth. Or if we’re really being hopeful then we’ll see that it is actually shrinking.

To be totally honest, I’m a little nervous about getting the results. For the past six weeks I’ve sort of just resigned myself to the fact that I’m doing chemo,  and now I finally get to see if all that I’ve put my body through is actually doing anything to stop the little bastard (er, I mean, “my tumor’) from killing me. As I get closer and closer to finding out the results I find more and more questions coming to my mind, and I’ve been getting increasingly anxious about everything. What happens if it is not working? What other options do I have?

Or what happens if it is working?

How Should I Feel if I Live?

I know this may sound absolutely crazy, but I’m actually nervous about finding out if it really is working – if I’m actually going to beat this tumor, beat cancer, and live a long life. I’m almost afraid of finding out that the chemo is working. You see, my dad died from colon cancer, and then my sister died from colon cancer recently. That makes me stop and ask: why should I deserve to live instead of them? Is it because I had my colon removed early and they didn’t? Is it because I decided to go ahead with chemotherapy and they didn’t? Is it because I made the right choice and they didn’t?

I remember discovering that my dad tried alternative methods and treatments so that he could find out a way to beat this genetic cancer for his children. He knew that we would have to make similar choices and face the same thing he had to face. Christina decided to follow him and try alternative and naturopathic treatments for her cancer. I decided to follow a more traditional route and have my colon removed, and I have continued down that same medical path with chemotherapy. Part of my reasoning to have my colon removed was so that my brother and sisters could see how a medical treatment would work. That’s part of what made going to the ER and finding I had two desmoid tumors so hard. I wanted my choice to work and give my siblings options to deal with this – but instead they now have a choice between a rock and a hard place. It looks like the options are: 1) try the naturopathic route and risk colon cancer, or 2) have your colon removed and risk desmoid tumors. Both options suck, honestly. My brother is making that choice now, and I hate that he has to wrestle with this – and his wife too. I wish my way had been painless and easy, but it hasn’t been. And now I’m doing chemo at 30.

And where is God in all of this? Is he up there just hoping I choose the right treatments so that he can heal me? Did he hope that Christina would choose chemo so that he could heal her? That is a very hard question for me to ask. Why didn’t the naturopathic treatments Christina did stop the cancer from taking her life? What am I to think if chemo heals me? Does that mean that I was right? Do I even want to be right if it means that my sister and dad made the “wrong” decision and died as a result?

It’s hard for me to imagine God is up there just hoping that we make the “right choice” in this position. As if his hands were tied because Christina didn’t try chemo and now he can work since I did. So it scares me that chemo might heal me. Part of me almost doesn’t want that. Part of me will feel guilty if I live – a sort of survivor’s guilt. Part of me wishes that I could have died in my sister’s place. She had a husband and two small children while I am single with no one depending on me – why did she have to die instead of me?

I don’t know. I’m not sure I even want to know anymore…

Following My Sister

I don't know why, but this is one of my favorite photos of Christina and I.

I don’t know why, but this is one of my favorite photos of Christina and I.

When I started blogging through this journey, my little sister said that she wanted me to write a post about what it is like going through chemo so shortly after I watched my sister die from colon cancer. She asked that weeks ago, but I haven’t had the words to write about it. In many ways, because of chemo and being in the hospital, I feel like I haven’t even had the energy or time to fully grieve my sister’s death. I’m not sure that I have fully grieved yet (or perhaps even started grieving), but in anticipation of hearing my results on Thursday I’ve been thinking a lot about Christina. I’ll be flying to Houston to stay at my sister’s house with the husband and two precious children she left behind, to see if I’ll survive the same genetic disease that killed her, although in a different way. It’s hard not to think about Christina.

This year I felt like I grew a lot closer to Christina. Part of it is because of just wanting to be near her while she fought cancer, but part of it was due to many shared experiences. I was there when she had to have surgery for a loop colostomy, and I joked often about how we were “stoma buddies” (a stoma is the opening of the colostomy, which I had briefly when I had my colon removed – people with stomas are awesome, trust me). I had just recently been released from the hospital in June when we found out that she was in the hospital again and went down to Houston to be with her. I felt like I could talk to her about pain medications and anti-nausea pills and walking to wake up your bowels after surgery and all of these new common experiences. I’ve started to notice little things that she did that I now find myself doing because of chemo or my surgery – like taking random deep breaths involuntarily, or slightly nodding my head at times, or having to groan at times when I roll over or move in bed. In many ways, it makes me glad to share these experiences – it is as if I was and am able to share in her suffering, and somehow even maybe help bear it a little.

I wonder if now she is sharing in my suffering, perhaps helping to bear it a little.

I wonder what she would have thought of me choosing to go through chemo.

I wonder what books she would have been reading that we could discuss while I get my infusions.

I wonder which of my new board games she would have enjoyed playing with me.

I wonder if I’ll see her soon, or have to wait some time… and I wonder which of those she’d rather for me – or which I would rather, honestly.

More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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  • Reply Laura October 10, 2016 at 4:45 pm

    Reading through tears. This is raw… and real…and …revealing. We will keep praying. You are loved. We just can not imagine what you are facing moment by moment…but all your friends at PRBC are praying ….

    • Reply Jason Custer October 11, 2016 at 11:31 am

      Thanks, Laura. I miss everyone at PRBC!

  • Reply Kathryn Goettsch October 10, 2016 at 5:13 pm

    Jason, we are desmoid friends. I have contemplated the problem of suffering and the perceived interruption of my timeline as well. You have so much to bear, to lose your sister and your father –I am sad for all the heartache. I have been comforted by Scripture somewhat, Job and the gospels….remember when the boy was blind and the church leaders ask Jesus who sinned, the boy or his parents? The answer was neither, it occurred to bring glory to God. What is a stumbling block to the wise reminds Christians who is in control, aka not us. The good and bad rain down on the good and bad. He still loves us. What Satan intends to destroy us with, even that pain and heartbreak God can work together for our good. My tumor has encased my vertebral artery and if it continues, it threatens to overtake my spine at C2. Paralysis at that level means I won’t possibly be able to breathe unassised. Doctors said sep 20 I have 4 to 8 weeks to start treatment. Radiation, IMRT followed by proton therapy will begin Nov 1. It is my last best chance. So I’very been thinking a lot about my mortality, too, and it’s uncomfortable. I mourn not being part of the next stages of my life in the way I thought I would be. But what my friends who have cancer are saying is that it is about surrender and trust that God is with you every step. I don’t know why it has to be this way. But the eternal timeline will be glorious. And one day we will understand, either on earth or in heaven. As Job says, naked I came into the world, naked I will depart. The name of the Lord be praised.

    • Reply Jason Custer October 11, 2016 at 11:35 am

      Thanks for sharing, Kathryn. I’m sorry to hear about your situation. I go to Job a lot too – but sometimes he’s a sorry comforter like his friends. I’ve always clung to Jesus’ words in the gospel of John, “What I am doing you do not understand now, but you will understand hereafter.” The now can be tough, though.

  • Reply Sandra Glahn October 10, 2016 at 7:50 pm

    Yeah, this made me weep too. Thank you.

    • Reply Jason Custer October 11, 2016 at 11:36 am

      You’re welcome, Dr. Glahn.

  • Reply Cari Daus October 10, 2016 at 10:26 pm

    Thank you for sharing your real thoughts. I miss her everyday.

    • Reply Jason Custer October 11, 2016 at 11:36 am

      You’re welcome, Cari. I miss her too.

  • Reply Keeli Goodnight October 11, 2016 at 6:50 am

    Praying for you Jason and praying for peace as you wait for your results. God is bigger than any of the choices that we make here on earth. Focus on Him alone. As Christina said “He’s all that matters!” Thank you for your bravery in sharing your journey and heart with us.

    • Reply Jason Custer October 11, 2016 at 11:37 am

      You’re welcome, Keeli. Thanks for your prayers.

  • Reply Tristan October 11, 2016 at 2:38 pm

    Brother Jason,

    I feel you. Every time the darn CT rolls around we come to the fear of a negative result. However, it will always be that God has chosen that you proceed because He has more for you to do and learn through His gift of Life. Each of us are given, from time to time, a rather heavy cross to bear.

    Picture yourself in the Garden with our Lord, I’m sure His visions were as powerful as your questions, fears and doubts. He sweat blood because of the duress of what was rushing through His, so what you are going through is normal. However, the Lord moved on from that place fully prepared for all that was to unfold. And my prayer is that you get to that place of peace – take one hour or day at of time washing all the regrets and what ifs away. Then you can rejoice in the fact that you are still here fighting, still here shining your light for the Lord, and setting an example for us of what redemptive suffering really looks like trusting that God is ever close to you.

    When you stumble under the Cross, remember to Get Up and March On!!!!

    Peace, Love and Blessings,

    • Reply Jason Custer October 21, 2016 at 10:47 am

      Thanks, Tristan.

  • Reply Mark Zeck October 11, 2016 at 7:21 pm

    I’ve been thinking about you and your posts a lot lately. I was hesitant to say anything because I know of the depth of your walk. You are one of the most solid young Godly men that I have ever known – be it from a distance. I can’t offer you any great revelations that you don’t already know better than I do but I’ll offer what was in the Word this evening as I prepared the SS lesson. It touched me and you came to mind – and I try to be obedient.

    Hebrews 5:7-11 is a special passage that speaks of the passion of the Christ as he was becoming the perfect High Priest. Several high points, as you know, are covered but verse 7 sets the stage. William L. Lane, who also suffered from cancer, expressed it far better than I can.

    “The kerygmatic summary of Jesus’ earthly ministry in v7 provides content to the assurance that he participated fully in the human condition (2:14-18) and was tested in every respect like we are, in order to become a high priest who was capable of feeling what we feel (4:15). These moving words express how intensely Jesus entered the human condition, which wrung from him his prayers and entreaties, cries and tears.”

    Perhaps some time in this passage with our wonderful, all powerful Comforter will minister to you in this time of need. Your honesty ministers more than you’ll probably ever know.

    We love you and are praying for you,
    Mark & Doris

    • Reply Jason Custer October 21, 2016 at 10:49 am

      Thank you, Mr. and Mrs. Deck. I appreciate the encouragement and prayers. It is good and encouraging to remember how much Christ identifies with me in all of this. Thanks for sharing.

  • Reply Debora Annino October 12, 2016 at 12:46 pm

    Jason, I have prayed for faith over fear as I journey through cancer with my husband but, I am learning that faith and fear sometimes coexist. I have faith, as I know you do, that God is in control and that every moment of our life on this earth is planned according to his purpose and He will not take us home one day earlier than that plan is completed. However, I also understand that there is fear still in regarding pain and uncertainty in our earthly life. As you wise friend Mark, shared in his post, Jesus, through his full participation, knows our suffering, pain and fears. I know that you trust the Lord with all your heart, soul and mind. I shared your post with my husband this morning and it was an encouragement to him. Thank you for your honesty and know that I am praying for you, for courage, increased faith and wisdom. Your story will reach many and will be a testimony to so many others. Love & Grace, Debora

    • Reply Jason Custer October 21, 2016 at 10:51 am

      Thanks, Debora. I appreciate your encouragement and words.

  • Reply Kjerstin Kauffman October 12, 2016 at 5:17 pm

    Tough questions. I think that’s one of your favorite photos because you look just exactly like a brother and sister. 🙂

  • Reply Jason Custer October 21, 2016 at 10:52 am

    Thanks, Kjerstin. You very well may be right. I never thought of that.

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