Posts by Ellen Harris-Braun

What comes out of my pleural space

This morning we had our first visit from a palliative care nurse.  We got set up with the Visiting Nurse Association for oversight of the lung-draining process, which continues every other day for now.  Then we found out that the VNA also has a palliative care program so we signed up for it. Now we have someone who can help us investigate various pain-relief options and also set me up with a visiting occupational or physical therapist who can help with my left hand. As part of this they offer something called anodyne therapy which I had never heard of, but which looks like it might help my hand pain. Anybody ever had any experience with this kind of treatment? It seems to work by increasing circulation.

She also gave me yet another end-of-life document to fill out: a MOLST or Medical Orders for Life-Sustaining Treatment. ****I thought all my work on the Five Wishes document was all I needed to do, but apparently not.  So I will tackle that eventually.

The foot and leg edema that was an unfortunate gift of my last hospital stay is getting better slowly. My right leg and foot are pretty much all better and that leg feels stronger lately too.  My left leg is no longer swollen but my left foot is still kind of a puffy mess.  Yesterday when we went to the office of the compression-garment expert, I not only got a compression glove for my left-hand–to address the edema in my fingers as well as protect that hand from accidental touching–but we also asked her advice on the foot edema. We have been getting different stories from different semi-experts about what might help besides elevation and eating lots of protein. She suggested a compression stocking and explained why there’s no such thing as a compression sock. She had some samples, so now I have a pair of nice black light-compression knee-high socks and I think wearing one is already helping the foot a little bit.

Eric goes to California on Sunday for a week and my mom comes Sunday night for the duration. I am lucky to have so many retired and self-employed people in my family who can come visit when it’s needed!

I think I have made my peace, or as much peace as I can right now, with the fact that I most likely will die much sooner than everyone else I know.  Of course this sucks, but I don’t find in myself a lot of feeling that it’s unfair. I don’t ask, “Why is this happening to me?” *This–*the likelihood of dying soon–is kind of what I’m signed up for at this point.  So I’ll try to make something good come out of it too.

What I have not made peace with is the amount of pain I am experiencing along the way, or the disability that comes from my peripheral neuropathy: the numbness, tingling, shooting zapping feelings in my feet and the numbness, constant cold sensation, weakness, and clumsiness in my hands–plus pain with most contacts of the left hand, which I keep tucked away in a mitten for protection.  I am basically one-handed right now and that one hand ain’t so great.

The back pain that was my daily torture for months has subsided substantially, and my daily headaches have pretty much gone away. Those are good developments.  But the extreme edema left over from my December hospital stay has caused a lot of foot and leg pain and made it even harder for me to walk.  Before the hospital it was hard for me to walk any distance, but since then I have a lot more weakness and pain in my legs–maybe due to something called steroid myopathy.  (Still working on getting off steroids.)  It is painful and hard to stand up and I am unsteady as I shuffle around.  And my knee still mysteriously hurts.  And my neck muscles spasm some mornings for an hour or so.  Why? Who knows.  (I am taking various drugs to address the pain with varying results.)

So when it comes to the daily pain burden and the increasing disability, I do wonder, “Why does my journey have to include all this? It’s not fair.  It’s too much.”  It’s harder for me to handle than the underlying fact of incurable cancer.  If there is a way I can keep on living despite this disease, does that mean years ahead of hurting this much every day? Of needing this much help with daily basics like getting dressed?  Wow.  I sure did not sign up for that.

It pretty much applies to all realms of life.

Want one? You can have one too.

The sign-up box at right is now working fine.  Use it if you want to get e-mail whenever I add a blog post.

Friday 12/18 after chemo I was feeling pretty good overall–the Zofran was working to keep nausea away and I didn’t feel too bad. But then Saturday I woke up feeling totally knocked down. I couldn’t walk to the bathroom without help.  Not only were my major muscles weak, I felt sort of like sludge was in my blood vessels instead of blood. Sunday afternoon we talked to my oncologist and decided to go to he ER to find out what was going on–most likely the pleural effusion had built up again and would need a more aggressive solution than the one-time drainage of the previous Wednesday.

In the ER they use an ultrasound to confirm that the pleural effusion was back and was interfering with my breathing and oxygenation. But as an early Christmas present, they also followed some clues from the EKG they did to find out that I had fluid around my heart as well. That was not an emergency, but needed to be dealt with pretty soon before it became dangerous. So I was admitted to Albany Medical Center yet again to have two procedures done the next day: a drainage catheter put in to the space around my heart for a couple of days and a more permanent catheter installed to drain the space around the left lung.

Glimpse of oncologist using his wiles to get me moved to the oncology area, a better neighborhood of the hospital

I spent Sunday night in the hospital, had the two procedures both done on Monday afternoon, and was discharged on Thursday, Christmas Eve. Since then I have been home sitting on the couch or in the bed waiting to feel better and having Eric drain fluid out of my lung every afternoon. How romantic!

We went to NYOH yesterday to see about chemo, which was on the schedule, but I didn’t really feel well enough yet. My feet and legs are really swollen from the IV fluids I got in the hospital and it’s painful to walk. I guess I am less out of breath now. So that’s the short story of the latest bumps in the road. There may be more to do with the heart, depending on whether the fluid is building up again. Both buildups are caused by tiny cancer cells blocking the drainage of normal fluid, so killing the cells off is really the only solid solution.

In other news, both kids are home from school and my mom is visiting so there are lots of people around to help this invalid get through the day.

In other bad news, the reason I need so much help is that the neuropathy in my hands got worse enough during my time in the hospital that I can’t touch-type anymore, and can’t do a lot of other things, like buttons and opening jars, requiring reasonably working hands. Besides them being clumsy and numb, one hand also hurts when touched by almost anything, or used, or lowered below the waist.

Had to add a few more equally obvious Don’ts.

In the plus column I’ve gotten the lymphedema in my left arm under control so I can wear the lighter and more comfortable compression sleeve and gauntlet during the day and only wrap my arm in the graduated-compression bandages at night.  In the hospital, though, it was bandages 24/7 and the nursing staff put up a sign–which seemed so obvious given the big bulky bandages that we felt compelled to add to it:

**"No BP Left Arm"**

**"(No SpO2, no IV, no lifejacket storage)"**

Much has been going on in the last week, which I will write about soon, but in the meantime here is a source of info for anyone else has had to give up their hair to chemotherapy. I am expecting this might be me in 2 to 3 weeks.

It even taught me a few new tricks!

The only thing she left out was the need to pad your bald head to make hats fit or to make a thin head covering look like there is hair underneath it.

I am at NY Oncology Hematology getting my first dose of my first cycle of my second chemotherapy regimen: Gemzar (gemcitabine) and carboplatin.  I like to sit in an out-of-the-way corner because it’s quieter–no chair neighbors watching TV.  It’s the same chemo schedule as before–Day 1 and Day 8 of a 21-day cycle–but very different drugs with more recognizable “chemo sucks” side effects.

I have been very lucky to be on a chemo drug without those side effects all these months!  (22 months to be exact).

But now my cancer has begun, as my oncologist said Wednesday, “to start acting the way we expect of triple-negative breast cancer.”  Meaning the Eribulin stopped preventing new sites of disease from developing, and up they popped.  Last week’s CT scans showed all this:

—the many small “spots” in my lungs grew, showing that they are metastases (which we pretty much knew)

—there’s a 1 cm lesion in my pancreas and some mysterious associated fluid collection around the pancreas

—another small tumor seems to have developed on one adrenal gland

--there are two enlarged lymph nodes in my abdomen

—in the lining behind my left lung was about a liter of fluid that was a mix of blood and pleural fluid.  Not sure what caused that, exactly, but it is likely due to some more tiny cancer cells blocking the normal drainage of the area between the two pleural layers (some fluid is normal).  I had it drained by the pulmonologist on Wednesday--they took out 600 ml and said there was more in other smaller "pockets" they didn't bother to drain. Now we have to wait and see whether the fluid will collect again.  

Other than the pleural effusion compressing my left lung and adding to my shortness of breath, none of these new things cause any symptoms.  We hope that the two new chemo drugs will control or reduce them as well as keep control of my two original mets (R lung and sternum).

So I had a full month off of chemo.  And now it's back to the negotiating tables since the cancer decided it had a lot more things to say to me.

My friend Lisa is helping me to set up e-mail notifications so that when I add a blog entry, anyone who likes can get notified of it by e-mail.  It’s not quite working yet but…close!  Stand by for future exciting technological announcements.

(Part three of four musings on vanity’s role in my life.) I have always enjoyed being a person who is useful, who gets things done, who follows through on details, who is handy, who helps others more than needs help herself.  I can still be that person in some realms, but not others.  I am riding out some big changes in what I do with my life energy and trying not to let them get me down or make me feel less of a valuable person than before.

But. I am a Certified Professional Midwife but no longer attend births.  That is big.  I gave up being the primary midwife for homebirth clients just a few months after my diagnosis; I had one pregnant client when I was diagnosed and was committed to seeing that through, but I could tell I would not have the space in my new life to keep that up.  I assisted at a few births here and there after that, but the last one was in January.  Now I am not healthy enough to get up and go to a birth in the middle of the night.  And whether I would have the energy and focus to be someone’s midwife, even for a prenatal visit, is not predictable from day to day. But it’s not just on that level that I can’t practice midwifery right now; being someone’s midwife means taking responsibility for someone’s care and prioritizing their needs sometimes over one’s own.  Being seriously ill means I can’t hold that space for someone else; to do it with full intent and generosity requires emotional and practical and what I think I have to call spiritual dedication that I just can’t afford.

So I am no longer serving women and families in the way I planned to do.

For the last 10 years I have worked with Eric as project manager of our shared Web projects and also as a junior programmer (learning as I went along from him).  But the stretches of time when I feel able to dig in and write code, or debug code, are pretty few these days.  When I had chemo in 2006, it took me 8 months afterwards before my brain was clear enough to really start programming again.  So maybe some of the same thing is going on, or maybe it just takes a level of focus that is hard to attain in between appointments, taking medication, various self-care tasks, and feeling too bad sometimes to concentrate on anything much.  So in the realm of programming I am not useful right now (even for my favorite project, the MANA Stats Project).

I’m unsteady on the stairs so I can’t carry a laundry basket up or down, and right now I’m too weak and out of breath to carry our big salad bowl to potluck.  I am no longer the person who carries a visitor’s suitcase up the stairs.  In fact, I seldom carry my own backpack.

I am always looking out for things I can still do, like empty the dish rack or dishwasher, pay the bills, make calls, deal with the junk mail, and fold the laundry (while seated on the couch).  I like to find favors to do for people with the skills and abilities and time that I have–like fix an earring, or superglue a mug back together, or do the paperwork to sign a friend up for EZ-Pass.  It’s important to me to still be useful–somehow. I am vain about, or overly attached to, being that person in the lives of others.  When I can’t be useful, and the flow of help is even more one-way than it is now, will I still be as accepted and as loved?

P.S. Friends say that having the opportunity to help me and love me is the favor I am doing them, the gift I am giving them now.  I hear that, but I think I am maybe not big-hearted enough to really understand it yet.

I’m currently on a bit of a ‘chemo holiday” to see if that helps with my various pain symptoms and the neuropathy.  I got numb fingers two weeks ago, which led to me calling off the Eribulin last week and the oncologist's suggestion of a “holiday” to give my body some off time and see if the chemo is contributing to or causing the various pains I have (mostly back and knee).  So this is my usual week off, but i skipped my second dose of chemo from cycle 30 last week.  II have CT scans next week, and then the week after we meet with the oncologist again to see what to do.  (That's a l-o-n-g scan interv-hell!)  

If the cancer hasn’t grown then probably a cycle's worth of holiday (3 weeks) before beginning another chemo—one that doesn’t have a big risk of neuropathy.  If it has grown then no more holiday, I’ll start on something.  Maybe Xeloda, which is suspected to maybe get into the brain (good for me).  We decided not to dig into that decision until we need to.  The chemo drugs known to work best for triple-negative breast cancer (TNBC) also have a high risk of neuropathy, so for now they are not options.  Newer drugs (that may actually work just as well for me) have less risk.

The next step *should* be entering a clinical trial of a PARP inhibitor, very likely to work well on me because I have TNBC, but I need to be off steroids to be eligible.  And I am far from being off steroids, unfortunately.  But tapering down slowly--I have made it from 50 to 27 mg of Prednisone since the beginning of September.  Headaches continue, but not any worse.  And I have a new medicine to try that is aimed at headache reduction, starting tonight.

We’ll see what happens with my “lung spots”—I am hoping they are just sitting there still being mysterious and tiny.  

Moving on to the next kind of vanity (part two of four)…

Vanity about function: My body doesn’t do what it used to do.  One year ago, I jogged three miles with my sister and probably went for a walk later on in the day, too.  Back then I was doing interval training most days as well as walking two miles and often jogging a mile or so.  I felt great.  But it’s been a tough year, this Year Two of stage IV cancer.  I am lucky to get a Year Two, I know, but it has been hard on me for sure.

I used to have good balance; now because of my numb left foot and my leg weakness, I am unsteady.  When I stand still, I wobble.  When I do qi gong, I lose my balance and have to grab for a chair or wall.  When I start to move, sometimes I kind of lurch on my left foot.  When I am walking, I feel better if I have three points of contact instead of just two.  That means I run my hand along railings or just touch a wall, or hold Eric’s hand or arm.  If my hands are full and I’m going upstairs, I run my elbow against the wall.  I don’t need to hold on, but I need to have something to lean against if I lurch or lose my balance.  And of course coming downstairs, I think about falling; I watch my step carefully and I hold on to the railing and I can’t have both hands full.

The numb foot also means I’m at risk of falling down: if that foot encounters something unexpected, like a tilt in the pavement or an apple in the dark on the farm road, it twists outward and doesn’t alert me soon enough for me to correct the imbalance.  And my legs are sometimes too weak to catch myself, too.  So I fall over to the left.  Only about once every week or two! Sustaining no damage–it’s an easy fall.

I noticed this in July in France: I used to be the person who got out of the way by stepping off the curb, nimbly, when I and an oncoming walker had to negotiate a narrow sidewalk.  Now I’m the person who sticks to the sidewalk and I make the other person give way, because I need to keep up my steady path on even footing.

Right now I can’t go for a real walk.  For a long time my legs have felt weak, like I just finished a 10-mile hike, but I could ignore that–they didn’t feel worse with exercise–until recently, when I think they really did get weaker due to inactivity during the pneumonia.  Right now a “short walk” means walking to the mailboxes and back.  A long walk is if I get out on the road, which I only have managed once in the last week or two.  My knee keeps me not walking, too, but I’ve been able to ignore that in the past.  So it feels like it’s the lungs and legs that are keeping me from walking, or, in my case, strolling.

It’s a bit of effort now to stand up, or lean over and straighten up again, and I use my arms to help get out of chairs.  Sometimes I think I shouldn’t do that, because it will just allow my legs to stay weak.  But sometimes I’m just too tired to challenge myself.  Every time I stand up I give myself a couple of seconds to get grounded and make sure I’m not dizzy.  Also I plot my progress through the hazards of living room furniture or the mess on Jess’ floor, because I might trip or bang into something.

The star marks our house. Our cars are usually parked at right, by the road. (Click for bigger version of photo)

Since my hospital stay, we have been driving up the farm road to the house about half the time–the half when I feel more tired and will wear myself out walking from the parking area by the road.  This is so ironic because I have been the person most defensive of the no-cars-on-the-farm-road practice the community agreed to.  I was the one who was so happy when we agreed to put a sawhorse at the start of the farm road to cue people that they should park, not drive right up to the house (including driving on the lawn because what, no driveway?).  And now who’s moving that sawhorse to the side on a regular basis? Why, us.  It’s like a little ironic knife-twist in my side every time we do it.

It is hard to accept that right now I am so wobbly and weak and out of breath, and harder to contemplate that this might not be so temporary–that “recovery” in this context might restore some of my function but won’t bring me back to a year ago.

All of this means I now can’t hide in the world of the well.  Even in that world, I show up as a sick person, whether I want to or not.  And of course I don’t want to!  The other day, a week after I got home from the hospital, I walked into a local farm & produce store.  The walk from the car to inside the store was about 20 feet.  I went in the double doors and paused on the floor mat, to plan my next direction so as not to wander and waste my energy.  The woman behind the counter saw this and asked me if I was okay.  I said I was.  Then she offered to get me a chair to sit on.  I explained I’d had pneumonia and I was just taking it slow.  She went and got me a chair anyway, and showed it to me later when I passed by the counter.  So, you know, my cover was blown the moment I walked in and paused! I bet I looked pale and wobbly too.

Fatigue means I ask for people to do stuff for me a lot–as much as my ego can handle–like go upstairs for something, or get me something to drink, or carry my backpack for me on the way to the car.  Eric and I have a well-balanced dance of asking/not asking/assuming/not assuming that most often works really well–he doesn’t assume I need help with everything, and when he offers help he’s very matter-of-fact rather than anxious or over-solicitous.  Sometimes I ask him to start something (like a dish for dinner) but I want to finish it because I want to have done something, and that’s okay too.

But really, it’s shocking to me how different my capabilities are from a year ago.  How diminished.  Am I this person? I did not sign up for this.

I’ve been thinking about vanity a lot lately. I seem to have a lot of it.  To me it settles out into some different realms:

Vanity about body appearance: from taking steroids for so long, I have chubby cheeks and a more rectangular face without noticeable cheekbones.  My face really looks different from before.  I was kind of dreading the steroid face all along, and here it is.  No pictures of me look nice to me. It took me a month or so to stop not-recognizing my face in the mirror.  This chubby-face thing really bums me out.  I liked my old face and this is yet another sign of the mandatory ongoing negotiations with cancer.

The original face

April 2015–18 months in…

The steroid face!

I’ve also gained weight elsewhere on the steroids–that and a lack of ability to exercise much lately–and steroid weight goes to the midsection so I’ve got more of a belly than usual and my pants are tight around the waist.  I was really feeling good about myself when I weighed 142 pounds and exercised every day; now I weigh 152 pounds instead and feel like there’s little I can do about it.

The combination of steroids and edema from my left arm means I have a double chin and maybe even a triple chin if I try, on the left side anyway.  Who said that was allowed?

My hair is really thin; in August and September about half of it fell out slowly, and I don’t know why.  Chemo? Steroids (possible)?  Anyway I now have curly, more-gray-than-before, sparse hair.  My scalp shines through.  On first glance it might not look weird but I am definitely sporting the “chemo victim” look all the time now, like it or not. The curls that want to go straight up are not really what I wished for all those times I wished for curly instead of stick-straight hair.

On the other hand, this summer sometime my eyebrows grew back.  For a while I had basically half an eyebrow on one side and 2/3 an eyebrow on the other side, and I had an eyebrow pencil and eyebrow mascara to make them look normal.  Now I don’t need to bother, so that’s nice!

But the way I look now overall gives the game away: I am an ill person, not a healthy person.  I am far more self-conscious now when I go places, like the chiropractor or even my oncologist’s offfice.  In the waiting room, I’m one of the obviously in-treatment And when I dig into how I feel about this transformation, I find a lot of vanity about my previous appearance–which I was very happy with–and grief that I have lost that, and with it my own feeling of being attractive.  I really liked my cheekbones.

Yesterday was the two-year anniversary of when I found out I had stage IV cancer.

In England in late September my left arm started to swell up a bit–mostly it seemed like my hand.  This is the arm with the DVT (blood clot) under the collarbone, and thus the arm I’ve been wearing a lymphedema compression sleeve on since early April to try to prevent lymphedema from developing.  Lymphedema is common in an arm when you’ve had lymph nodes in your armpit removed as part of breast cancer surgery, which I have–in 2006–though I never had a bit of trouble or swelling with it before the DVT.  Anyway the DVT is a risk factor for lymphedema too, because it causes venous congestion, which is a different kind of swelling but can interfere with lymph drainage.   You have a whole set of lymph vessels and lymph nodes in your body that collect and drain lymph fluid as part of your immune system–lymph takes away the used-up after-effects of infection and your body’s fight against infection.  Lymph nodes are the stations along the way where your body kills off organisms that shouldn’t be in your system (making more by-products to get rid of).  Then it all drains into your bloodstream at the end.  So it’s kind of like the Gowanus Canal–you don’t want it to just SIT there not moving.

You can check out this image to show the lymphatic system: Diagram of lymphatic system if you’re interested

Anyway there I was with possible lymphedema, but before I knew it I had blood clots in my lungs, and wasn’t allowed to follow up on the arm swelling because massaging the arm/shoulder might loosen up a few more clots.  So I didn’t get to go until I was safely back on blood thinners for a while–Thursday before last.  I learned how to wrap my arm in “graduated compression” bandages and look like a mummy.  This, along with gentle massage of the lymph channels from my hand to my neck including my left side, would encourage the static lymph fluid to move along as it should.  But it might take many weeks.  ARGH! Another self-care thing to do, and this one takes about 20 minutes a day.  Just what I needed.  Then before my next followup appointment I was in the hospital with pneumonia.  So I had to cancel last week’s appointments but it was really working!  So I was excited to go in on Tuesday and show off my progress.  Which was indeed impressive.  (I think it’s because it was only a month of not treating it–not enough time for the lymph vessels themselves to get too damaged, so the flow out of my arm can still happen the regular way rather than slowly through the tissue itself.  (Remember, everything in the circulatory system and lymph system works by differential pressures of different substances, and everything moves toward a lower-pressure area if it can. Veins and lymph vessels don’t pump their fluids themselves at all.)

Anyway, for some geeky reason I thought it would be fun to show how the graduated-compression wrapping works.  So here is a brief photo series.

The prescription is to wrap the arm 23 hours a day!

When it’s time to redo the compression wrapping, first I take all the wrappings off my arm.

Then I shower.  Then I apply more moisturizer than I normally would.

Then I tackle rolling up the bandages again (which are like Ace bandages but you don’t stretch them much at all).

So here are all the things I need, all ready for the wrap job.  (Which I have decided to consider as a craft project.)

3 bandages in different widths, but first: the stockingette sleeve and the foam layer.

Then three bandages, finally secured with those little clips.

It all takes about 10 minutes from here.

First the stockingette sleeve with a hole cut for the thumb.  This protects the arm skin.

Then the foam strip gets wrapped from the thumb around the arm up to the upper arm and tucked in to itself.  This provides more padding and protection for the arm.

Next comes the narrow bandage that starts at the wrist and wraps over the hand 3-4 times, then goes up the arm until the end.  Then a piece of surgical tape secures it (though again, it isn’t wrapped very tightly).

Don’t tape the foam or it rips!

Next the medium-width bandage, which starts below the wrist and goes up as high as it goes, then gets taped.

You’re supposed to avoid wrinkles in the bandages.  But you also wrap it loosely enough that you can move your elbow freely.

Finally I put on the third, widest bandage, which often needs some assistance to get right, because though it starts below the elbow, it goes almost to the shoulder and it’s hard to do it right way up there where I can’t really see.

That bandage gets secured with the clips and then–pro tip!–tape goes over the clips to keep their sharp edges from catching on my clothes.

Then the extra stockingette gets pulled down over the top of the bandage to further protect my tender skin.

Voila!  All done until the next shower.

And it’s working really well!  They told me 4-6 weeks of wrapping before the arm would go down enough to stop wrapping and switch to a new fit and strength of compression sleeve instea, but by next week I’ll be ready for that step.  Yay!  (You should have seen the left arm–on the right in this picture–a couple weeks ago.  It looked like a quite overweight person’s arm–still arm-shaped, but really big and round in all dimensions, and tense.

 What a relief that something is going right!  Even better than expected.

I need that right now because I’m still knocked out by the pneumonia (and blood clots in the lungs) and everything else seems like a big challenge everywhere I turn.

We are receiving so much help and company that it is easy to keep my mood basically positive most of the time, though.

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.

Woo hoo!  Off on another adventure.  *(Stage direction: read that with great irony)*  Tuesday morning when I showed up for chemo I asked the nurse to check my oxygen saturation level because I felt really beat and very short of breath again (since Sunday).  It was 89…when 94 & up is what you want to see, and in most healthy folks its 97, 98, 99.

So THAT earned me, instead of chemo, a day in the Albany Med ER, first getting a chest X-ray that showed fluid in my right lung, probably from a pneumonia or other infection that has gotten into my compromised lungs and got to stay because of the steroids that are compromising my immune system. I got put on oxygen to raise my blood oxygen level.  My sinuses are pumping out mucus that I then violently cough up, which was tiring me out entirely.  Finally I was admitted for observation, antibiotics, and continued oxygen, which did eventually help me feel better, once the coughing was under control with Robitussin.  The first night I had a quiet mostly restful time in my single room (infection risk) on the renal transplant unit, where I guess they finally found me a bed at 8 pm.  "Mostly" restful because of the 4 am check of vitals, arm stick for blood samples, and most absurd of all, weighing!  Yes, here is proof of this Pythonesque moment:

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).

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.

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.