Lung Spot Limbo

Well. My September 11 chest CT scan showed “multiple” very small nodules in both lungs.  Some looked like they could be due to inflammation/infection, and the radiologist noted that the largest one–only 4 millimeters–was most suspicious for metastasis.

So this is a new chapter, I guess.  Not one I am eager to read.

I am at risk of lung infection because of being on steroids for so long, so the first step was to rule that out. I went to a pulmonologist Thursday who said it didn’t look like I had an infection, but the nodules were so small he couldn’t reliably test for bacteria or fungus (by doing a “wash” of my lungs).  He said he saw 5 or 6 “spots,” but maybe there were smaller ones he didn’t notice.  So, let him know if I get sick, and come back in a few weeks for follow-up.

Earlier in the week we had delayed chemo in case I did have an infection, but now chemo is on again–for now–right after I get back from England (where I’m going Sunday to Sunday with my mom and Spee).  If this is the cancer spreading, then the Eribulin (chemo drug) is no longer working and we need a new chemo plan.  But right now we’re in sort of limbo–we don’t know that the spots are mets–and the original mets (in lung and sternum) are still cooperatively not growing at all (meaning the chemo is working on them).  Meanwhile all the other CT scan results were negative and reassuring, as was the bone scan (meaning the chemo is likely working in other parts of my body still).

I’m guessing I’ll have a quick-interval follow-up CT scan in mid-October to see what’s happening, and if a nodule has grown big enough to biopsy laparoscopically, we’ll do that.  Or something.  Overall, even though we will be in limbo for maybe the next whole month, I’m most likely looking at a switch to a new chemotherapy and a new stage of this living-with-cancer journey.  The trail has stuck to the ridge line of no-progression so far, but it seems to be dipping down the slope.

Since Eribulin has been so easy to tolerate (and even quick to administer), I’m scared that a different chemo regimen will decrease my quality of life at a time when I am still dealing with headache, leg pain, back pain, leg weakness, fatigue, blah blah blah.  I don’t really feel up for 3 days of feeling icky or nauseated per three-week cycle on top of all that!

There are more updates, and more thoughts and plans for the near future, but I will save them for another post another time.

We’ve explained to the kids what’s going on, and that we won’t know for sure for a while, but that this is not good news.  Today with Jesse’s agreement I gave them the whole background of the cancer situation I’m in–from 1995 to now, since Jesse asked about way back then as well.  Before now, Jesse has explicitly not wanted to know many details, but that left them making up their own more-scary story with no one to talk to about it.  Now Jesse should have a better idea of the way things are, I hope, rather than just “my mom is dying of cancer” which doesn’t really represent the complexity or timeline-uncertainty of the situation.

We talked about the different meanings and weights of “dying of cancer,” “has terminal cancer,” “is living with cancer,” “has incurable cancer.”  We talked about what situation would fit the description “dying of cancer.”  And we talked about how most of the things that are visibly making me no longer healthy and strong are not the cancer and are not going to kill me.  It was a really good conversation.  Although I did the majority of the talking, Jesse asked lots of questions.  We talked about how this all made us feel a little bit, too.  Not much, but…a start.  And there was much cuddling.

And now, to the important stuff: I must go pack!

Last Modified on September 19, 2015
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3 thoughts on “Lung Spot Limbo

  1. Shelly

    You and Eric have created and nurtured such a strong and caring family. A gift by you and to you.

    May your headaches, body pain, weakness, and fatigue be confiscated by airport security. I hope you have a wonderful, reinvigorating time away!

  2. David Millians

    Have fun in England and keep up that good, good cuddling and talking!

  3. Debra

    Tough results, damn. And a hard conversation too, but it sounds like you did an amazing job of it. I’m so glad Jesse was ready to hear — they really have a lot to absorb. Sending big hugs and I hope it’s a great trip! xoxoxo

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