Next Steps.

(Double post day! You may want to read “Again.” before you read this one. But you don’t have to or anything I’m just trying to be chronological about all this.)

A month ago I was moaning about how I just needed a break. This little heart of mine is exhausted. Tired of feeling miserable from chemo, playing catch up with my life, looming disease and unknown, blood thinning injections, skin breakdown around my ostomy, bad news. Just tired! Well folks, I finally got a break. My CT scan says no growth of any “nodules” and no new tumors or masses or nodules or spots or other synonyms of cancer. My disease is still microscopic and according to my oncologist and radiologist is “stable”.

I’ve still got a four millimeter nodule in my lung and the other two in my lungs are smaller than that and the periaortic retroperitoneal lymph node is still only seven millimeters. But anything less than a centimeter is deemed microscopic disease and some even say it’s not measurable. This is somehow so different for my brain than the it’s microscopic in your lymphatic system and spreading into your lungs even though nothing is really different. I feel more stable like my cancer isn’t exploding and spreading like crazy despite the systemic, hard on my body chemo.

I was lucky enough to get this news before I went to a family church camp that I’ve gone to every summer of my entire life. I was surrounded by people who have known me since I was born and have been prayerfully walking each and every step of this crazy road with me. I have distinct memories in high school and college of feeling like my life was going all wrong but knowing there were people who didn’t know what was going on but were praying for me made something in my heart rest. Knowing people are being more faithful to pray for you everyday than you are to eat breakfast gives you a level of confidence that can’t be generated by positive self talk. It’s powerful. But I got to be surrounded by these people and share the good news with them. It was a pretty cool experience.

A month ago I went and met with my oncologist to discuss the implications of stable microscopic disease on future treatments. What we decided to do is switch to a lighter dose chemo. Thank you Jesus! This means chemo pills and only one infusion. Two thousand milligram pills twice a day for two weeks then a week off (a three week cycle) and Avastin every three weeks. Three weeks ago I took my pills and went in for my infusion like a song bird. I was stoked and had every expectation that I wasn’t even going to notice I was still taking chemo. Neither of the drugs had side effects of nausea so let me at em! I told myself as long as I wasn’t nauseous I could tolerate anything! Well that was grossly unrealistic.

As soon as the infusion started the nausea hit me. I convinced myself at first it was psychosomatic (my mind was inflicting the nausea not the drugs). When that didn’t decrease the nausea I said, ok, it’s only the steroid I take before I get the chemo that’s making me nauseous. It’ll pass once the steroid is out of my system. I was pretty couch bound for the rest of the day which was horribly disappointing. Then the nausea persisted every day I took those damned pink pills. I’m still not sure why I’m nauseous, since it isn’t a side effect.

I was so wanting to get my life back! Go back to work at the hospital, start doing intense workouts again, reopen my physical therapy business, and travel! But nooooo I was plagued by a three out of ten constant nausea that increased to a four an hour after I’d take the pills. Zofran and Reglan didn’t do anything. So I’m resigned to learn to coexist with nausea and fatigue while I take these pills. I get to practice mental discipline and ignore it and push through it if I want to reclaim my normal life. I’ve gained weight which means I’m stronger. I’m back to Olympic lifting and doing workouts but am still very limited by fatigue and the weird dizziness with exertion. But I’m getting stronger every day!

At this point, I don’t know how long I’ll be taking the chemo pills. I know the plan is three cycles then we’ll hopefully do re-scans and it will show no new growth or spread. We may still do radiation in the future but I’m not sure. Then at some point in the future I have to be stable enough to not need chemo for three month in order to have the surgery to reattach my colon and get rid of this poo bag on my stomach. So I still have a big surgery and hospital stay to look forward to.

It’s a strange place to be, in all honesty. If I’d never had cancer you’d look at my scans and say I was normal and healthy (with the exception of my massive surgery and colostomy). My disease (if it’s even there) is so small it’s still not measurable. By all objective measures I’m disease free? It’s weird to say that. So I’m making myself sick with this chemo, and that feels lame and excessive. But at the same time the chemo is essentially keeping the disease dormant. This lighter chemo could potentially not be strong enough to keep the disease dormant and my next scans could show enlarged lymph nodes and new tumors and growth of those suspicious spots in my lungs. It’s a very strange place to be.

The mental battle still rages…. Don’t be afraid of what’s not there, but very likely is there. Don’t hold on to those experts words that said I would never be cured and could die within five years. Don’t grieve for what all this has cost you because better things are just ahead… I feel I have been promised a long, full, life and I still have to fight to claim those promises as fact. I still cry and feel sorry for myself frequently and battle hard against that. I have been very stable lately on God’s character which helps soooo much! When I doubt that or allow my circumstances to paint him differently than who He is, is when things get super dark and hard. Oswald Chambers said “Unless we can look the darkest, blackest fact full in the face without damaging God’s character, we do not yet know Him.” … We’ll shoot. That’s real.

I’m trying to find normalcy, routine, and make the steps to slowly live the life I see as mine. I can see it though, I know what I want it to look like… that’s a pretty big deal. I have a real vision and hope for the future. But for now I’m settling on battling with nausea and using my energy for things and people I looooove!! I’ll keep you posted!

2 thoughts on “Next Steps.

  1. Great news! But your feelings that you’re in a strange place is real. I can imagine it would be the same for me. My son had cancer and beat it. He was 25 when diagnosed, is 35 now and has been cancer free for nine years. For the first five years after his last round of chemo, every time he drove by the cancer clinic (on a main street that he drives on several days a week), he would get nauseous! Because he had gotten sick eating meatballs once and pizza once while on chemo, every time he saw or tried to eat either of those foods, he would get nauseous! Sometimes just nausea that would pass, but sometimes even throw up. He was told that was very normal. And I mean it took five years for him to be able to eat pizza again! So, perhaps because you know you’re taking chemo, you’re getting sick. Yes, psychosomatic, but real, and just knowing that doesn’t necessarily make it go away. My son knew he wasn’t driving into the parking lot of the cancer clinic, but he still got very sick looking at the building! Hope this helps! My prayers continue for you!

    Liked by 2 people

  2. Amy Sarah we are praying for you. We love you and are so deeply humbled and encouraged by your courage and grace. Feel the Carrie Squeeze™️ coming through this note. 🙂
    Love from the Sun and Mangat Family

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