It’s Sunday afternoon and guess what? I still have pneumonia.  (I have to keep reminding myself of this to explain why I am still so, so, so very tired and worn out.)  We came home late Thursday afternoon and I keep waiting to notice I’m feeling better, but I don’t notice.  I am doing much less coughing, though.

I didn’t have a headache at all on Wednesday or Thursday in the hospital, but we can’t figure out why.  Oxygen? Antibiotics? Now that I’m home the headache is back, which is really getting me down.

Anyway, the plan for the next week is: rest as much as possible, take antibiotics, and eventually feel better.  Then the week after that, back to chemo.  I guess I’m just skipping the second dose of round 29.

I got good news today at my oncologist’s office—my brain MRI yesterday turned up no new spots of cancer (in 4 months—my last MRI was June) and the ones zapped in May continue to cooperatively die and fade away.  So that is really great.  I don’t need more of that right now.  Too much else to deal with!

My left arm, upstream from the original blood clot in my brachiocephalic vein, has now developed some lymphedema so I have to go deal with that at the lymphedema clinic—not that it will ever go away.  Just more appointments and treatments and self-care regimens to incorporate into my days.  Hoping it won’t get any worse.

Also, the lung CT I had on the 12th to confirm the blood clots in my lungs also showed that my “lung spots” seen on the 9/11 chest CT are “grossly stable,” meaning that they basically didn’t change/grow in that intervening month.   That doesn’t mean that they aren’t new metastatic lesions, but at least if they are—which they probably are because they’re still there—they are slow-growing and still tiny.  Or the chemo is keeping them in check right now, even though they showed up despite chemo.  (That would hint that they are resistant to this chemo.)

And I got two hugs from my oncologist.  He called me “sweetheart” and I let him.  🙂  He has such energy and is so willing to meet me where I’m at that seeing him (which I do every 3 weeks, at the start of a new chemo cycle) is always a positive part of the day, even when the news is not good.  I am lucky to have him on my team.  I am very picky about my doctors and how they relate to me (and Eric): how willing they are to answer my many questions, how comfortable they are answering them in pretty science-y detail, how much choice they give me vs. how much direction.  Whether they look us in the eye.  Whether they laugh at my jokes.  And how I feel after spending time with them in an exam room.  I have known my oncologist since 2006, when my breast surgeon said, “You will definitely like him” and was oh so right.  He is my age, within a year or so, and has a quick mind and a good sense of humor.  Such luck!

We reduced my chemo dose too, because of my increasingly numb/painful left foot.  It is weird that I have such serious neuropathy in one foot only–usually chemo-induced neuropathy is more symmetrical.  But it is what it is–I just feel lucky that it’s only one foot.

Sometimes I wonder where my time goes.  Why am I not doing more “work”?  And then as I apply the TENS unit to my numb foot, negotiate with the insurance company about covering my pain cream for another month, make a lymphedema clinic appointment, and remember that I had chemo this morning before that trip to shop at the food co-op and the nap, I kinda vaguely see the problem…

We always figured a trial (of a PARP inhibitor) would be my next step after Eribulin but with the headache & steroids I am probably not eligible for many trials–usually steroid use indicates uncontrolled brain stuff and researchers don’t want those patients in their trials.  I am tapering off the steroids but it will be a long process, if it works at all in the end.  So that’s disappointing, if it turns out to be the case.  I am going to try to find out more about trials that are about breast-cancer brain-met treatment itself–I could probably get into those.  I have a brain MRI tomorrow (the last one 4 months ago showed nothing concerning, but that is a long time to hope for a weedless garden).  Then I have a consultation appointment on November 2 at Dana-Farber with a breast-cancer oncologist who has done a bunch of brain-met research (Nancy Lin).

Then there are these two new/upcoming trials, which include molecular analysis of patients’ tumors and allow for treatments that target those tumors if possible: TAPUR and NCI-MATCH.  That article is all I know about them so far.

I am feeling a bit better as of Friday–a bit more energy, a bit less out of breath.  I almost felt like I could try to take a short slow walk. But this is going to be a slow recovery.  Today I’ll try to start up with Qi Gong again and just take it easy on the deep-breathing parts that will be hard.  And yay, my mom is coming today to help out for a few days.

Something is reducing the pain in the rib muscles of my back–either the Cymbalta at the higher dose or the compounded pain ointment I’ve been using for about a week.  I am waking up less back-hurty, too, and able to sleep a little less propped up.

Headaches are the same so the shades are drawn in the house most of the day and I have sunglasses on a lot of the time.  As long as the headaches don’t get worse, I’ll keep tapering down the Prednisone with the goal of getting off the stuff eventually.

Luckily this week Jesse had a break from their school, Bard Academy, and I was supposed to be away at the midwifery conference so I didn’t have any appointments after Monday.  Thus we have all been sleeping in gloriously every morning.  Now it’s Saturday morning and I could be helping move firewood for the QIVC common house, but I am just Too Tired.

England was lovely!  Here’s more about the trip if you’re interested. I’ve been back a few weeks now and they have been less energetic than my time in England, for sure.  I did a decent amount of walking on the trip (along with a LOT of riding the wonderful Tube) but in the last week or so my left foot has gotten more numb and more hurty and it’s hard to walk very far, especially with my left knee also continuing to hurt some about half the time.

To continue with the complaints, my headache is worse in the morning and then most days goes mostly away; some days it sticks around.  I recently started taking Cymbalta for general pain (it’s an antidepressant but also used to treat, for example, fibromyalgia or chronic back pain) but I’m not sure if it’s doing anything yet.  I hope it will.  May have to increase the dose.  I have started going to a pain-management practice.  They prescribed a compounded pain cream that has various things in it including neurontin.  Not sure if that works or not yet–just picked it up yesterday after lots of insurance hassles over it (mostly handled by Eric).

Voice update: My vocal-cord damage is slowly getting a bit better, which is nice, thanks to vocal-cord therapy and tincture of time. Sometimes my voice sounds almost normal.  Sometimes, especially at the end of a talky day, it is all hoarse and breathy and can’t get loud.  Shortness of breath, which started at the same time as the voice problems, is only a bit better.  But I had lung-function tests yesterday which showed reasonably normal lung function in terms of lung volume, etc.  So the shortness of breath is not that my lungs aren’t working ok.  I guess it’s more that I’m not quite using them well enough (my diaphragm isn’t doing what it should be?).  However, even a bit better is noticeable.

I had chemo yesterday and last week–we’re continuing with the Eribulin, giving it the benefit of the doubt, until I get my lungs scanned at the beginning of November to see what those “spots” are up to.  By then I’ll also have had my next brain MRI (October 26) so we’ll know if anything is going on in there too.

And that’s the end of the health update I guess!

I had m periodic CT scans last Friday and a bone scan too, warranted by my back muscle spasms I guess, and we meet with my oncologist tomorrow afternoon to find out the results.  The Sunday after that I go to England for 8 days.  That’s not very long to make a new plan if the chemo has stopped working.

Meanwhile I had vocal therapy today to work on my partially-paralyzed left vocal cord.  I’m getting better, slowly.  Tomorrow, an ENT follow-up appointment before the oncologist, and if all goes well, chemo too.

A friend of mine just wrote me: “Having cancer is a full-time job, and one with lousy hours, benefits, and working conditions, isn’t it? And you can’t quit.”

Love that.

The last 10 days have been better for the headaches–I’m still wearing sunglasses and closing the windowshades most of the time, but having more edge of headache or threat of headache than actual headache.  Still not great, still taking a pretty high dose of steroids, and not trying to taper down yet because I don’t think I can take any more headache than I’ve got right now.  So I feel kind of stuck.

My vocal-cord problems are v-e-r-y s-l-o-w-l-y improving.  That means a tiny bit less shortness of breath when I do anything, and a bit more loudness of voice, and a bit less voice fatigue when I talk a bunch.  My voice is not my normal one–it’s lower and rougher–and I still can’t raise it much, or make high noises or an easy “eee” or “eh” sound.  I’m doing “voice therapy” every 2 weeks or so and have silly noise-making exercises like saying “Whoop!” from low to high 10 times in a row.  More to keep me busy.

We’ve had a lot of family visitors the last 2 weeks, plus other visitors dropping in to say hello as well. The past few days my mom, aunt, uncle, and friend Julie have been here.  They shopped and cooked and cleaned and tackled projects around the house, and I have felt good enough to not have to hide in my room instead of being with them.  So nice to have such people!  And lucky to have more to come.

Jesse has already started school (at the brand-new Bard Academy at Simon’s Rock in Great Barrington, MA as a day student–9th grade).  Will goes back to Buxton School for 11th grade on September 10.  He’s been driving a lot this summer and is shaping up to be a really good driver.

A few weeks ago my good friend Birdie sent us Atul Gawande’s latest book, Being Mortal.  It took us a while to read it but WOW.  I think everyone should read it.  Especially if you fall into one of these two categories:

• You have aging parents and are helping them navigate the years of their lives when their capacities are waning and living independently is getting more difficult (the first half of the book addresses our culture’s approach to care of the old)
• You or someone you are close to is dealing with a terminal illness and you are interested in learning more about how our medical culture approaches treatment options, information-sharing, and decision-making (especially for people with cancer).  (The second half of the book addresses doctors’ beliefs that “I don’t have anything else to offer” but continued treatment beyond the point that it is effective, and explores what else there is to offer if we look beyond the usual boundaries of curative medicine.)

Here’s the New York Times review, which tells a bit more about the author’s journey through these issues.  It’s a book powered more by stories than by studies–very readable, and full of insights that I found really important.