Five days of blogging in one

After three rounds of meds on the clinical trial I had a CT scan to see if the tumors were growing or shrinking. My husband and I drove down to Cincinnati and to the Oncologist office where we found out that they had gotten incomplete results from the Radiologist in Toledo (our home city). The radiologist had only reported on the ablated tumor that we are not tracking. We then spent three hours trying to get a new radiologist to reread the CT Scan and get my oncologist the results. The results were finally called in to my oncologist and he was told that my tumors were not shrinking and had in fact grown over 20% which means I got booted from the Clinical Trial. Home we went. It was horrible. Already having chemo not work and this next best hope not being effective was just bad.

A few days later I had an appointment with my Toledo oncologist. We discussed next steps. The plan is to have another tumor removed using Single Burst Radiation Therapy and then go back trying to find another clinical trial to try. I would also schedule an appointment with a cancer center in Detroit in case anything helpful came through their pipeline. No good options here, but I am lucky at least they are currently small tumors in surgically viable places. I always get a copy of my CT results and this appointment was no exception. I had to ask a couple of times but before I left I got a printout of the CT results. Both the original incomplete result and then the addendum read by the second radiologist whose findings were then called into my Cincinnati oncologist.

When I finally got a chance to read the CT a few hours later while sitting on my front porch I read it once and I swear I stopped breathing. The CT Scan report reads:

Cavitary nodule in the superior segment of the left lower lobe measuring 1.4 x 0.9 on the current study measured 1.6 x 1.1 cm before.
Cavitary component has increased as a proportion of the mass and only a thin rim of soft tissue remains consistent with the response to therapy.
Similar changes within the nodule in the right upper lobe posteriorily which measures 1.5 x 0.9 cm today versus 2.2 x 1.4 cm previously. This nodule too is now mostly gas with only a thin rim of soft tissue remaining.
Impression: ….”have both decreased in size over the imaging interval”.

I read the report over and over and over again thinking I must have turned stupid. How I could I be reading that my tumors were shrinking. I waited until my husband got home and had him read it and he read exactly what I read. We called and left messages for all of the doctors. We spent the whole weekend thinking YAY! It was all a screw up  – killing the cancer…

Monday

Talked with my Clinical Trial doctor. It’s all bad. While it’s true the two tumors that we have targeted are dying and shrinking the ABLATED TUMOR – the theoretically DEAD clump of tissue grew by 21%. 1% over the allowed growth and I am now permanently out and can not get the medicine.

I am so FRUSTRATED AND ANGRY. How can this be? How can all that pain and bullshit have been for a tumor that isn’t dead? Or  what if it is and this is some weird other thing like scar tissue buildup? Won’t matter, still out of the study.

 

Thursday

I haven’t been blogging this week because I am too scattered. I find it hard to sit still for very long. I have a thousand things going on in my head. I have an appointment next week with the cancer institute in Detroit and will hop back on the cancer train then.

I just got off the treadmill – Literally, not figuratively and this adds too my frustration. It mimics this whole treatment journey. My will is strong, and I am doing what I need to do but not getting the results I want. My muscles are getting stronger, but my lungs are getting weaker. I have the ability to run, but my oxygen supply only lets me run for about four minutes at a slow pace before my lungs and throat start burning. My heart is strong and I am barely in the cardio zone. (it goes zone 1 – fat burn -zone 2 – cardio zone 3 – I don’t remember but it’s full blast) I feel cheated by my body. If you wonder why I run it’s because it’s the benchmark for me. It’s how I know I am fighting and still winning.

Okay – I guess it’s time to start a new entry tomorrow. 🙂

 

 

 

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4 thoughts on “Five days of blogging in one

  1. Wait, so they kicked you out because the tumor that they WEREN’T targeting grew? What the fuck?

    Even aside from how shitty that is it seems like they’d at least want the data on that weirdness. You’d think “reanimates dead flesh” is a side effect they’d want to know about.

    So if the growing one is dead, and the others are gas, does that make surgery an option again?

    1. Yeah..I dunno what’s next. Surgery is always an option. The two little tumors may start growing again since I am no longer on the meds.

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