Life & Health

Contemplating Chemotherapy: Is this the End?

February 3, 2017

Most of you know that I have recently finished my prescribed 6 Rounds of chemo, and yesterday morning I got the results of my latest CT scan back during my meeting with my oncologist. I shared a brief update on social media but wanted to give a more full and detailed explanation here (if you don’t want to read all the details, feel free to skip down to the “Too long, did not read” section below).

So, is this the end?

Yes and no.

Yes, it is the end of chemo – at least for the foreseeable future. The scans show that my tumor (“the little bastard”) has remained stable since we began chemo, and that is what my oncologist at MD Anderson wanted. What makes my tumor dangerous is that it was located in my mesentery (a sort of web that holds all your intestines together in your abdomen) right near the mesenteric artery which supplies blood to the intestines – so any growth could cut off that blood supply and kill my intestines. You sort of need your intestines (although I hear they can do intestinal transplants now!). So no growth of my tumor means it is no longer life-threatening. Which I’m very happy about. I like life and living. I plan to continue with both. I  like life and living even better without chemo. So I’m very happy. Life with chemo sucks. Life without chemo is awesome.

So yes, in that sense, this is the end. At least it’s the end of the major battle for my life that began last year. But at the same time, no – this is not the end.

No, this is not the end of the war for me. Unfortunately, although the tumor shrunk about 20-25% between Rounds 3-4 of chemo, the tumor remained largely the same size between Rounds 5-6. That isn’t bad news, since stabilization is what we’re after – but it wasn’t exactly what I wanted to hear. I wanted the little bastard to be half as small (or smaller) than when this all started. My oncologist told me that there is still a chance that the tumor keeps shrinking slowly even after being done with chemo – but we won’t know until my next CT scan (3 months from now). So I get to be a “normal” person for at least 3 months, instead of chemo-boy. I’m glad for that change.

However, life never really goes back to the way it was before after something like this. For one, I will still have a tumor in my abdomen – and may have it in there the rest of my life. Many people have asked: why they don’t just keep doing chemo since it has already shrunk some because of it? The short answer is – at this point, continuing chemo will be more harmful than helpful. My chemo combination is one of the most intense, so 6 rounds of it is pretty damaging to the body – it is derived from mustard gas and all. I at least need a decent break so my body can recuperate. Also, eventually the cumulative effects of chemo on the body start becoming more of a poison than a cure (especially on your heart with my particular chemo cocktail), so there’s a life-time limit, and they don’t want to use up all the chemo I can take in my life this early just to shrink the tumor more. If the tumor starts growing rapidly again later in my life, there’s a very real chance that I have to do more chemo to stop it like this time.

What about other medications? The hard thing with that is that desmoid tumors are so rare that we don’t have tons of research about them, so most other drugs are sort of “experimental” and have varying degrees of success with different people – and some of the results don’t show up until at least 6+ months on any given drug. So it’s not that there aren’t other options, but each is a calculated risk and will be dependent on how fast the tumor is growing. If it remains stable, there may not be any need to do any medications and we’ll simply watch and wait.

So you are just going to have a tumor in your abdomen for the rest of your life? Perhaps. I know, I’m not super comfortable with that idea either. I don’t like the little bastard (or is he a “slightly smaller bastard” now?) any more than you do – and the idea of him leeching off of me for the rest of my life is not endearing to me at all. So why don’t we just go in and surgically remove the tumor? Unfortunately, these desmoid tumors grow in scar tissue from surgery – and since I’ve already had two of them, I seem to be especially prone to developing the little bastards. So they want me to avoid surgery as much as possible. Further, this particular tumor is not like many tumors that are relatively contained balls or spheres, it is sort of like roots that wrap around my mesentery and blood pathways in my abdomen – so any surgery to remove the thing has a very high chance of accidentally cutting off blood pathways to my intestines and doing the tumor’s damage for it. Plus, the nature of the tumor intertwined in my mesentery and intestines is that it will be very difficult (if not nearly impossible) to get “negative margins” in a surgical removal – meaning they probably can’t get all the tumor even if they go in. In fact, they already tried when the two tumors were initially discovered after my ER visit. Also, since desmoids grow in scar tissue, any surgery will increase the chance of recurrence.

What about radiation? Again, the location of the tumor makes this more harmful than helpful. Because the mesentery webs throughout the intestines – and my tumor webs throughout my mesentery – trying to direct radiation at only the tumor is nearly impossible. So again, the radiation will do the tumor’s job and kill my intestines for me. So it’s a no-go. The little bastard is fairly clever and got into a really defendable position in my abdomen – so it looks like he’s going to be there for a while, to my dismay.

Too long, did not read: No more chemo (Yay!). Radiation/surgery won’t help (Huh?). Might have a tumor for life (Aw!)

The New Normal

So while I’m done with chemo, this isn’t over for me. On top of the regular scans I’ll have to have (perhaps for the rest of my life), I also have several other medical things to take care of. For example, I still have a large polyp in what’s left of my lower colon (technically my rectum, but that word makes everyone awkward so sometimes it’s just easier to say colon, or semi-colon) that doctors’ were concerned about, as well as one near my ampulla (near the duodenum, which I’m sure helps you all locate exactly where that is). I was scheduled to have both those removed before I found out that I had to do chemo – and I had to cancel them. So now I have to take care of those once I recuperate from chemo. I also have several large cysts (more evidence that I’ve won the genetic lottery with FAP) that are becoming uncomfortable/painful and may need to be dealt with. Then there’s the matter of all the medical bills and continuing medical expenses (which, if you want to help with, you can donate or share here and I’d be extremely grateful).

So there isn’t really any going back to “normal” for me, but rather continuing on with a “new normal.” I’ll still have a tumor in my stomach, but when my hair grows back and I’m recuperated from chemo, nobody will be able to tell but me. This is sort of like grieving, actually. Many people have told me this is the hardest part – when the big public hardship is over and you have to settle back into “regular” life. When the funeral is over and the meals stop coming, people forget. It’s amazing how people come around you initially to support and encourage, but sadly once the public spectacle is over you’re left alone. It’s not that anyone is malicious or means to forget, but it’s just that time obscures our vision and tends to make us think that things are better – that things are back to normal. We all watch the war, but few of us see the smaller battles. I know I’ve done the same thing with other people, and I’m deeply sorry that I’ve forgotten your pain and sorrow – that I’ve assumed a little bit of time makes everything better and takes away all the scars. It doesn’t.

I’m not saying any of this because I feel that people have forgotten me – I’ve just finished the war, and I continue to be overwhelmed by the love and support and encouragement I’ve been shown. But if I’m honest with myself and with you, I’m sort of scared about where I go from here. I’m afraid that things will go back to “normal” for everyone else but me. While the medical side of this makes me a little nervous, I think it’s the grieving side of everything that worries me most. I still feel like I haven’t even begun to grieve my sister’s death – I’ve been too busy grieving and surviving chemo and the little bastard. But now it’s 6+ months since my sister’s death, and I’m done with chemo – so I’m afraid everyone will think I’m out of the woods when I’m not. I’m afraid I’ll pretend my scars have healed when the wounds are still fresh and fester because I try to hide them.

Part of me wants to just erase all of this and leave this as a simple medical update instead of sharing my fears and concerns – but I want to be honest in the hopes that maybe people can understand how other people feel during this time. I know I’m not the only one that has these fears or has experienced being forgotten after a major life change like cancer or losing a loved one. I know I’m not the only one who has gotten left behind when everyone else returns to normal life. I hope we (myself included) can open our eyes to see those around us who are still carrying a secret burden that has all but been forgotten.

Is this the End of Blogging?

No… But maybe also: yes, in one way.

Yes, it’s the end of the Contemplating Chemotherapy series. I really hope I don’t have to write about chemo ever again. I will not miss it. Good riddance and all that.

But writing this series has made me realize how much I enjoy writing – so I want to continue as much as I am able. I’m not totally sure what that will look like right now. Maybe I’ll start a semi-regular series on grieving in hopes that it will help me work out my own grief. I also hope to be able to read and travel again once the chemo wears off, so I’d like to try to write about my reading and travels. I’ve also wanted to write more about the Dark Night of the Soul and the church calendar. So it might just be a conglomeration of different topics. I’ve got a couple of specific posts in my mind right now. If it still seems random, I’ll just blame the chemo. Or maybe I’ll blame the slightly smaller bastard instead since he’ll most likely be around for some time.

For those who have joined me in this series, I do want to say thanks for coming alongside me and sitting through all my rants! I don’t have anything to give you, but you get the participation award. I hope you’ve at least enjoyed my sarcasm. Writing this series has been very dear to me and really helped me through chemo while keeping my sanity, so it’s been great to learn that people have actually read what I’ve written. Hopefully, that continues to happen.

If you do plan to continue reading my random ramblings on the blog:

Do any of those topics sound interesting to you? (Grief, travel, books, church calendar, etc?)

What other topics would you be interested in reading about?

More posts from the Contemplating Chemotherapy series:

Round 1:

Round 2:

Round 3:

Round 4:

Round 5:

Round 6:

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  • Reply Christina McKelvey February 3, 2017 at 9:51 pm

    Do keep writing. I would be interested in church calendar, but hope you can get back to traveling, too.

    • Reply Jason Custer February 11, 2017 at 10:49 am

      Ok! Will do. Lent is coming up soon, so I definitely want to do a post on that.

  • Reply Bridgette Marriott February 8, 2017 at 10:46 am

    Jason, I guess I need to work on my writing skills since it seems at the moment I can’t seem to find the right words to describe what you and your blog has come to mean to me, a complete stranger to you. I have found that through watching you take this journey (do you feel like a fish in a fishbowl?:-)) that it’s not to different from my own in many ways.

    To have the privilege to pick that brain of yours; I’d like to learn more about 1. your grief, 2. about how to draw close to others and therefore allow people to draw close to me, 3. the transitioning into your new normal, and 4. how you’re processing the.. I don’t know what to call it but maybe the “Lazarus effect/affect”?

    What I mean is when I think about Lazarus in the context of my own journey, I think about the fact that he knew he was sick, he knew he was dying and he died. Then the next thing we read is that Lazarus hears the voice of Jesus, opens his eyes only to find that he is in his funeral clothes, in his tomb, buried but alive (& smells really bad). He walks out to his new normal. Everyone he knows and then some, saw him sick, dying, dead but now all better. Did he get the stares, the comments “Oh you look so good. You look so much better. I can’t believe you were so sick and died!! Wow, Lazarus, look at you! You are getting groceries!!” Did he roll his eyes? Did he ever get tired of explaining? What did he do with his life after people forgot? Moved on to the next big story? Did he have ptsd every time he caught a cold??
    **Ok, sorry Jason, may have gotten carried away there but with all my sarcasm included there, do you see where I’m going? So, yea, there is what I call “The Lazarus Affect/Effect”. It’s not ©,® or ™. So feel free to use in future posts. Lol. **

    I, the complete stranger, really would appreciate if you will keep writing. I want to draw close, know how to pray for you, learn from you, and laugh with you. God bless my brother in Christ.

    • Reply Jason Custer February 11, 2017 at 11:29 am

      Thanks, Bridgette. I like the idea of the Lazarus Effect. I’ve sort of been noticing a lot of that recently, and it’s very interesting to think about. I’m pretty sure I’ll keep writing about grief, because that’s what I’m dealing with mostly right now. I have a post in mind that I just need to sit down and write eventually. Thanks for the encouragement!

  • Reply Doris Zeck February 10, 2017 at 3:25 pm

    Hi Jason, Yes, PLEASE keep writing. These blogs reach deep into our lives whether we have cancer or not. Your honesty is quite refreshing and has encouraged me to be more frank about many deeper issues in my life. Your expressed writings have also reminded me none of us are or should act like we are the only person on an island with “issues” going on in our life. God has worked through you in all these blogs. Thanks so much.

    • Reply Jason Custer February 11, 2017 at 11:30 am

      Thanks, Doris. I appreciate the encouragement, and will continue writing. Thanks for following along!

  • Reply Donna Cunningham March 16, 2017 at 3:58 pm

    Jason, I have read your whole blog and I am very amazed and impressed with your wtiting abIlity! Your writing is so honest, thought provoking, funny, sarcaastic, spirtual and so on point when it comes to grieving and grief. I can’t relate to all the pain and suffering you and your family have endured and continue to face but I praise you for sharing about it. I will keep you all in my prayers. Please continue to write something! I am hooked!

    • Reply Jason Custer March 16, 2017 at 11:07 pm

      Thanks! I plan on writing more as things come to my mind. I hopefully will have a post or two up in the next week or so.

  • Reply Karen D. November 6, 2017 at 3:12 pm

    Hello Jason! Thanks for being awesome and giving enough through your experience to still think of ‘us’ and share the deepest and darkest of your experience. I sought info about your cancer and treatment as I have a friend who starts round 4 tomorrow and I wanted to understand a bit about what he’ll be going through. Your blogs are honest and raw and your sharing of your truth is deeply appreciated. You are now 9 months past your round 6 treatment and I wondered if you’d be so kind as to provide an update? It’s selfish to ask, as I’m curious for my friend, but I’ve also grown to care about you and your cup. And sorry, I’m not a 30-ish single lady looking for a thoughtful, well spoken fella such as yourself. I hope the next update has fantastic news.

    • Reply Jason Custer November 23, 2017 at 3:18 pm

      Hi Karen. You’re most welcome, and thanks for reading and following along. Sorry I’m just now responding to your comment, and I’m sorry that your friend is going through chemo – chemo sucks. I forget that not everyone who reads can see my updates on Facebook. I’ve had three scans since the end of chemo (every three months), and so far the tumor has stayed stable. That’s good news, according to my oncologists. I get my one-year scan at the end of December and was planning on doing a full update then on my blog.

      Is that the update you were looking for? Or is there more you’re interested in hearing?

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