Contemplating Chemotherapy: Is this the End?

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.

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

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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.

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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?

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More posts from the Contemplating Chemotherapy series:

Round 1:

• Intro to Chemo (Day 1)
• The New “Normal” (Day 2)
• The Drop-Off (Day 3-7)
• Chemo Jason vs. Normal Jason (Day 8-14)
• “[Bald] and Unashamed” (Day 15-28)

Round 2:

• What if it Works?

Round 3:

• Sleep, Productivity, and Babies
• Guest Post: Facing the Reality of Death

Round 4:

• Thanks(giving) for Chemo?
• Advent, Watching, and Waiting with Chemo
• “To Live is [Chemo], to Die is Gain”

Round 5:

• What You Say vs. What I Hear with Chemo/Grief
• Chemo Christmas and the Sacred Ordinary

Round 6:

• Confusing Chemo/Grief & Coming Close
• Is this the End?