And the next complication is…

I am now the proud owner of a non-emergency pulmonary embolism event.  I have lots of small blood clots in my lungs, since Saturday AM when I woke up even more short of breath than usual and kept running out of energy when, say, walking down the hall to the bathroom.  Rapid heart rate too, I figured out on Sunday.  So Monday AM I called my oncologist’s office and got a CT scan that afternoon and here we are.  

The clots most likely came from the area of the original deep vein thrombosis (stationary clot) behind my left collarbone.  That March clot should be scarred over and immobile by now but there are other veins around that area working extra hard to drain the blood from my arm, and maybe some of those clotted up (perhaps when my left arm swelled up in England?) and the clots came loose.

Here’s my hypothesis:

  • Sept. 23 in England I noticed my left arm was swollen more than since the original DVT in March.  Before then it had not swelled up–my body beefed up a lot of accessory veins to route around the blockage caused by the DVT.  I was also on prophylactic blood thinners that whole time until Sept. 10 when I went on a lower dose of blood thinners (about 2/3 as  much).  I think this was the point where some of the other veins got partially blocked, causing the venous congestion (swelling).
  • The swelling triggered a followup with the vascular specialists, who discussed my whole case and decided I didn’t need to be on blood thinners at all, after all this time.  That the swelling was unrelated to the dose reduction (or the airplane travel, or anything anyone can figure out).  So we decided–because getting off medications is good when you can–to try no blood thinners for a while, as of September 29.  That was really nice–no injections.
  • The arm stayed the same or got a little bigger.
  • October 10 I woke up, stood up, and was short of breath.  Seems like overnight the clots came loose and lodged in my lungs.
  • It just can’t all be unrelated and random.  I need to find the storyline.

I should be going to the Midwives Alliance conference in Albuquerque right now, but nobody’s going to let me get on a plane for a while! And honestly I’m not sure how much of the conference I could enjoy with this level of fatigue. I just have to lie low at home, be back on blood thinners to reduce the chance of more clots, and wait for my body to absorb the existing clots and make me better. Apparently this is not a fast process.

(The theme of the conference this year is “SHINE.”  I had a dream a few months ago that I walked into a hotel lobby and went up to an older Hispanic or Native American woman behind the desk.  Someone who looked unexpectedly wise for a hotel registration desk.  I don’t think I said anything, but she told me this:  “Shine. Live your life.”  That was the whole dream.)

So no Midwives Alliance conference for me, for the first time since 2002, and after that, no Northern New Mexico adventure with my family.  More things cancer and its complications take away from me.  

The list of things is getting long.  Working as a midwife. Time and energy to work on programming.  Vigorous exercise like interval training and jogging.  Now even walking longer distances for exercise.  Sure-footedness.  Right now I can’t even do Qi Gong because it takes too much deep breathing.  Enjoying a bright sunny day. Waking up without a headache.  Time–so much time every single day is spent on the requirements of being sick instead of living life.

The limitations of my current life are forcing me to give things up. Maybe sometime I will learn to let go of them with more grace and acceptance instead.

4 thoughts on “And the next complication is…

  1. Shelly

    I think you are letting go of things with as much grace and acceptance as humanly possible–and more than most people can manage. Cancer is a hell of a monkey on your back to live with day in day out. And yet you never quite reach the point (not on your blog, anyway!) of sounding complaining or “poor me.” You are a heck of a strong person (and just being strong can be exhausting, I’m sure!). I hope you can at least enjoy a bit of the autumn breeze away from the bright sun. While I’m hoping, I’ll add a hope for those clots to dissolve quickly…and for science to come up with some new and improved cancer treatments sooner rather than later. Like now.

    • ekhb

      I think the treatments are out there–they are still experimental. PDL-1 inhibitors and PARP inhibitors are what are likely to work for me, plus copper depletion. All in trials, not available/approved by the FDA for breast cancer yet.

      I whine plenty, just not on the blog!

  2. David Millians

    Gentle hugs!

  3. Dorian

    Being pissed and grieving, rather than graceful and accepting, sounds entirely appropriate to me.

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