Sick

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)"**

(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.

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.

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 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.

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!

Trying to deal with various pains and aches these last few months, I have accumulated a wide variety of what I think of, in more humorous moments, as “cancer-lifestyle accessories”–all kinds of things people give you or you acquire because maybe they will soothe an ache or prevent a pain or cushion your knee or keep a headache at bay.  Or keep you from coughing at night, or help your numb foot, or cover your head, or…the list goes on and the stuff keeps accumulating.  Some of it works out and becomes (temporarily?) critical to day-to-day life.  Some things you try and they just aren’t the right thing.  Some things I happily don’t need now though I have dozens: hats and scarves.

Some good stuff I depend on right now–accessories that would be sold along with me if I were Cancer-Lifestyle Barbie:

• Numerous **pillows** in various shapes and sizes, including an inflatable one for travel and one flattish one to put behind my back in the car to make the car seat less curvy, oh and the one I carry around to cushion my hurting knee when I sit down.
• **Sunglasses**.  To keep the light out of my eyes because that triggers the headache.
• **Sun hat**.  Ditto.  Below is a picture of Jesse in my hat.
• **Biofreeze Ge**l!  It's active ingredient is menthol and you rub it on what hurts you.  In my case, my back mostly, but also my forehead and temples and back of my neck for headache; my shoulders, my knee, and sometimes my new sore spots on my foot.  It is freezing and it basically drowns out the pain signals with tingly cold signals for 30 min to an hour.  My friend Anne is a master at putting it on my back for a good long freeze!  And the most accessorized part is this: I now have it in gel, and a spray (good for applying it to your own back in the middle of the night), and I have a different brand that rolls on (good for taking everywhere because you don't have to wash it off your hands afterwards and with it I can reach most of the parts of my back that hurt).  And now I even have some in a big pump bottle...things are getting seriously Biofreeze-dependent around here.
• **Gel heel protector** for my new neuropathy sore spots--not sure this is helping a lot but it makes sense to cushion that area.  It slips on to my foot and just adds a little squish layer under my sock.
• **Cloth sleep mask**--useful for when the sun comes in the window in the morning and gives me a headache before I even wake up.  Even more useful for when I have to lie face-up in a bright procedure room for a CT scan or whatever and stare up at fluorescent lights.
• **Port protector:** This one is hard to describe.  I have a medication port just below my right collarbone, and it sticks out.  Passenger-side seatbelts rub against it sometimes.  A nurse at the chemo room gave me a neat little invention that a quilter relative of a fellow port-user made: it's a disk of foam with a hole in the middle for the port, and on the top surface a strap that attaches it to the seatbelt. So you put in on the seatbelt and position it over the port and it cushions and protects the port.  And it happens to be...purple!  This would be a great present for anyone with a new and irritating port, but I can't find the good kind online.
• **7-day pill organizers** that *constantly* need to be reloaded!
• **Smartphone** w**ith lots of alarms** for medication times: It is constantly telling me it's time to go take something.  Very needy and demanding.
• **Pedometer** on my smartphone: I set a goal and at least I know whether I reached it or not every day.  Some days I can, some days I can't, but it motivates me to see it adding up.

Jesse in my hat

For the last two weeks, because of my knee pain and a weird new cough triggered by my standard sleeping position, I have had to figure out a new way to sleep (or be woken up every 60-90 minutes…not fun).  So suddenly I am a person who needs: a pillow to put under my knee when I ride in the car or sit in a seat for a long time, a person who needs a full-sized pillow in the car to lean on when she is tired on drives, plus a person who needs, as far as I can figure, the ridiculous amount of 5 pillows to sleep at night. Maybe 6.  (“Slut!” says Eric at hearing six)

I found Not Enough anticipatory-guidance style info online for this stereotactic radiosurgery experience from the patient perspective--so here are some photos that may be useful for someone to run across someday.

All went well at chemo today–liver enzymes blazingly normal.  For random reasons, I was in and out of there in record time–70 minutes from the front desk to out the front door again.  Cycle 22 completed!  Now I feel a usual amount of icky but will feel better tomorrow.

My liver enzymes went back to normal yesterday so I got chemo–we’re calling it day 1 of cycle 22 with a skipped dose on day 8 of cycle 21.  Last week was my unplanned week off of chemo–last Tuesday my enzymes were still too high for the oncologist to be comfortable, so no chemo, and instead, a visit to the liver specialist upstairs at Albany Med later in the week.

That was a reassuring consult, because my enzyme elevations were called “mild” in the liver-disease context, and the blood testing has ruled out any disease causing the elevations (hepatitis, etc.).  The fellow working with the specialist told me liver metastases don’t raise the enzyme counts (confirming something I had already heard from someone else but wasn’t sure about).  And the specialist ended up talking to my oncologist and reassuring him that I could still get chemo with mild enzyme elevations if the chemo was of benefit–it was unlikely to damage my liver.  So!  All that is good.  Even though we still don’t know what caused the late-April ALT/AST elevations–if not Sudafed plus everything else.  They even tested my Epstein-Barr Virus titer and it didn’t show anything active.  The liver specialist thinks it could have been the chemo drug itself, since that happened to 18% of takers in one trial, but on the other hand, I’m on month 16 of the same drug and it hasn’t had that effect on me.  So.  Water under the bridge–I hope so.  And if that same water cycles by again, we can desist from freaking about about it so much.  Thank you, liver specialist!

I suggested my oncologist take a deep breath and let the liver thing go now, but he said “I don’t take deep breaths.  I’m just going to worry about next week’s enzyme levels.”  Well, I’m not (much).

Meanwhile I have sent in my paperwork for disability (and eventual Medicare if I want).  That was a lot of work.  Since the DVT I have felt honestly more disabled by my situation, though it’s often disability-via-too-many-appointments rather than disability-via-physical-inability.  Though I’ve got some of that too.  I am trying to return to two walks a day, but they are shorter and leave me tired.  I’m also trying to stick to doing my 30-minute PT routine once a day, and ideally do some qi gong once a day as well.  That’s a lot!  (I do it with the help of my neighbors here at QIVC, who join in with me and encourage me and provide interesting conversation.)  And that routine is not something I’m holding myself to on days like today, post-chemo, post-bone-medicine-that-causes-flu-like-symptoms, and post-IV-vitamin-C treatment (feels like ick also).  I took the 2 shorter walks but I don’t think PT or qi gong is going to happen: I am tucked in bed with my head feeling like bleh.

Despite feeling icky today I was lucky enough to enjoy a delicious lunch at my friend Gina’s house…so lucky to have a friend who loves to cook and share!  I cannot describe how good that quiche or related eggy thing tasted…ahhhh.

So, curb cuts.  Here is how I’m living a slightly different version of life now.  When crossing the street in Chatham or Albany, I go for the curb cuts.  It now apparently matters, to an unconscious part of me that directs my feet, whether I have to pick up my leading foot that extra 4" or so, or whether there is a nice slope for that interim step between street and sidewalk.  Conserve energy!  I guess that’s what I am doing.  I just noticed this a week or so ago.

Next week ideally will be chemo again on Tuesday, then various brain-zap set-up appointments Wednesday and Thursday.  Same for Tuesday the next week, then zapping on Wednesday the 27th.  So that’s the plan!  More later on the metastasis spreadsheet, which I actually pulled off, and shared with my oncologist and radiation oncologist.  Next: conquer the world with it (the world of radiology at least).

Tuesday was all day at Albany Med, but most of it was easy.  We got there super early–6:35am.  Getting the frame “installed” was weird but dealable, and having it on my head all day was annoying and weird and eventually made me a bit headachy, but was not too bad.

We had brought five movies but didn’t watch a one of them, as it turned out.  It was very comfortable waiting in the “living room” at Radiation Oncology and we were taken really good care of (except I didn’t need that because Eric was taking really good care of me). After the frame was put on and I had a quick CT scan, it was back to the living room to wait from about 7:30 until 2.  The time went by pretty fast, actually.  I had to figure out how to eat around the frame (with my fingers).  We did some work and took some pictures.

Our friend Dorian came to visit and brought art supplies for a little project I got into my head to do.  Also, delicious gourmet doughnuts!

Lounging with the frame

The doctors and the physicist did all the mapping and planning with Monday’s MRI and the morning’s CT scan, and they were ready for the procedure at 2, as planned.  The actual procedure turned out to be 90 min instead of 60 due to them having to set, check, adjust, recheck, adjust, recheck, adjust, and recheck the beam placements before being ready to zap me.  Each of those cycles included physical adjustment of my head cage and/or the targeting lasers and then a couple x-rays.  Meanwhile this whole time I am lying on a table with my head clamped into the frame and the frame bolted into the table.  Which put my neck at a weird angle.  We used folded towels to raise my shoulders so it wasn’t too uncomfortable.  This time I listened to Journey’s greatest hits (that’s what was already in the CD player and really, it was kind of fun) and then an REM album.

Eric has fun drawing on a picture of me with his phone

When they finally had all the settings adjusted, the 16 zaps themselves took a long time.  Ativan helped.  But by the end, the novocaine had certainly ALL worn off and my head hurthurthurt from the pin/clamps.  As soon as the zaps were done they came in, unbolted me from the table, got me up, and off into an exam room where they swiftly removed the pins & frame.   Then they bacitracin-ed my four little wounds and put steri-strips on the forehead ones and delivered me back to Eric in the living room.  Dr. Chandra came in to say hi–he looked about as tired as me–and didn’t really get the joke of my card at first.  But he did eventually crack a smile.

So we talked about my next set of zaps, with the much-easier mask routine (4 or 6 weeks from now–three tiny tumors that have popped up and grown a tiny bit).  Then I went home to eat a lovely dinner brought over by our neighbor and fabulous cook Marcy, watch a movie with Jesse, and fall asleep.

(My tips for picking a hospital when you have metastatic cancer or some other long-term disease: besides good doctors and caring staff, find one with a good cafeteria–ours has good fresh sushi at decent prices!–and free parking.)

I’m actually up to 8 but Chandra didn’t have a hole punch.

It’s Saturday afternoon and all is quiet around here.  Which is good, because the three H-Bs in residence are beat!  All day yesterday and until 2 today we were spending time at Simon’s Rock learning about their new Bard Academy program for 9th and 10th graders, in which Jesse is now (as of this afternoon) officially enrolled for the fall.  Jesse will be a day student for 9th grade, though most of the students enrolled so far are boarding.  20% will be day students.  It was all exciting stuff but it was tiring to be outgoing, social, and attentive for so long at a time.  We’re excited to know what Jesse is doing in the fall and to feel more sure that this will be a good program for them.

I felt a bit undercover in that context–with my thin but “passing” hair, my shirt covering my port and my compression sleeve (to prevent lymphedema in my still-somewhat-swollen left arm), my many scary medical appointments and procedures lurking in my recent past and even more immediate future, my low energy and physical fatigue bolstered and covered for by Eric…meeting all these new people and having all these parts of who I currently am be hidden away while trading basic information with other parents, with Simon’s Rock (early college) students, with faculty and staff.  All while thinking about whether this was the place, the context, the culture, the institution, the people where Jesse would get what they need if and when I get sicker and sicker.

So.  Now we’re home.  The last week has been one of slow improvement.  The Neurontin seems to be working pretty well on my leg pain and I’m down to 3 morphine pills over the last week.  I’m doing my PT exercises twice a day (30 min at a stretch), struggling to find energy for a walk as well, doing qi gong sometimes too.  My brain is back somewhat in shape because: no morphine.

The weird thing about the Neurontin is sometimes I feel messages from my knee that feel very–the only way I can describe it is “wide,” like of large amplitude, but they are kind of empty rather than being full of pain like before.  Very strange.  Also my legs feel very noodle-y and weak, like I just hiked 20 miles or had a big scare.

So, Tuesday is my brain zap which means Monday I have yet another brain MRI.  Tuesday I’ll be there from 6:30am until probably 3 or 4 pm, spending most of that time waiting around in Radiation Oncology’s very cozy “living room” with Eric or whoever else comes to keep me company.  They better not be easily weirded out, because by 7 am I’ll have a metal “frame” attached to my head to allow for very precise zap-targeting, and it stays on all day between the early morning when they put it on and do a CT scan of my head in it and the afternoon when they do the zapping.  In between they merge Monday’s MRI with the CT scan and do the planning, which means designing the radiation beams to go in various parts of my skull and cross over in the tumor.  They are powered to only do damage where there is more than one at a time–where they cross.   The location of the tumor is tricky so the frame is needed to make sure I stay the most still possible.  When using the mask, as in my previous two zap adventures, they build in 1 or 2 mm of marginal zap zone to make up for the bit of movement possible in the mask.  This time that’s not a good idea.  So I’ll have the frame attached to my head.  I will spare you the pictures because it looks kind of scary, though the neurosurgeon assures me that people are way more freaked out about it ahead of time than after they’ve had it on for 10 minutes.  Basically it’s a metal structure that will kind of orbit my head and face, held to my head by pins that are tightened down to my skull in two pairs (front & back), kind of like little clamps.

Sounds fun, huh?  I think I’ll just rest up between now and that next adventure.

New alphabetic possibilities

So with my current life I can almost pull this progression off: P PT PTT APPT SAPPT (pee, physical therapy, prothrombin time–a test of clotting ability that I actually don’t have to do–yet another medical appointment, and that would be enough for me and my energy would be sapped!)

The narrative burden I’ve given myself with this blog can feel kind of hard to carry along sometimes, and the last two weeks have been like that.  I have been busy with appointments and imaging procedures, and very tired, and not all here brain-wise to boot. Here is a quick catch-up summary for those following from home:

• I left the oncologist’s office with a prescription for oxycodone–possibly overkill, but I can’t take NSAIDs or Tylenol, and that eliminates a lot of pain meds.  Unfortunately the oxycodone didn’t work at all–except to make me woozy–so after 4 or 5 days of that he switched me to a very low dose of morphine.  Which makes me way more woozy–so much so that I mostly can’t concentrate for long and keep dropping off to sleep when reading and just feel very fuzzy.  But it does seem to work on the pain somewhat, so I am very happy to be climbing out of that depressing trough of intermittently immobilizing pain. When my leg and my shoulder hurt at the same time, I feel like a butterfly pinned down to a box.

• The vascular surgeon was not particularly informative, hadn’t looked at my chart, and didn’t seem to want another patient, really, but grudgingly agreed I could come back in 3 months for a look at the clot to see if it has done a good job resolving.  Blood thinners for most likely at least 6 months, though.  I now know the correct way & location to inject the Lovenox twice a day–don’t trust the ER to give you good instructions–but I still get a bruise about every third time.  Looks pretty pitiful as well as not feeling real good around the “love handles.”

• All the imaging studies I had on my leg came back negative for more cancer as a cause of the leg pain, which is great.  (X-ray, ultrasound, bone scan, CT scan.)  This week I finally got to go see an oncological orthopedist who thinks it is some kind of sciatica-related problem (the leg) and has no idea about the shoulder.  He prescribed me Neurontin for the nerve pain in both limbs, and PT to help the leg. He (unlike my oncologist) was not eager to do an MRI of my pelvis & hip–he said breast cancer metastases don’t tend to hide on bone scans and CT scans like mets from other types of cancer do, so he trusts that the imaging I’ve already had is good enough to go on.  For now.

• My liver enzymes went way down, almost to normal, by the time they were tested again on the 26th, and then were normal by the 31st, when I showed up for the first day of my 20th cycle of chemo.  So: Tylenol was most likely the problem.  And now I’m back on chemo, which makes me relieved.  Maybe if/when I get to 25 cycles on the same drug I’ll get some kind of medal?

• I hope I respond well to the Neurontin and can taper off the morphine.  After just a few days, it seems like that might be working, so cross your fingers that I will be one of the strong responders to Neurontin.  Right now the brain fog is the thing I’m having the hardest time with.  It is not an unpleasant feeling, but it means I haven’t figured out how to work on any real brain-centered project, and I have quite a few hanging around waiting to be finished (or started).  I am very low on physical energy and feel sleepy a lot.  (Kind of like last March.) Neurontin can also cause fogginess but apparently not as much as morphine, which really does a number on me apparently.  Yesterday I took only one morphine pill, at 7 am, and didn’t need another (yay!), and finally felt like the fog was lifted by 10 pm.  At which point I had to go to bed. Oh well. I feel like I’m mentally down below the surface of some weird water and struggling to get back to the air. That sounds too desperate, but take away the desperation and that’s the feeling.

• My first PT appointment is tomorrow and I’m also seeing the functional chiropractor I’ve seen twice already, who gave me core- and leg-strengthening exercises meant to fix what’s wrong.  I will have to figure out how to blend what he wants me to do and what the PT folks want me to do.  PT 2-3 times per week. Luckily it’s only 20 minutes away.  It’s in a town we don’t go to much, in the same plaza as Ocean State Job Lot, where I never have been, so maybe we’ll acquire a lot of junky stuff at really cheap prices.

• My 6-week follow-up brain MRI last Thursday was the last of the imaging studies that filled up my two weeks instead of chemo.  This morning was my appointment to find out about it and make a plan.  One of the two “dots” we were following closely (6 weeks between scans) stayed the same, just a dot (apparently this is now approved radiology-report terminology…maybe I missed a footnote defining the minimum and maximum diameter of “dots” somewhere).  The other dot grew and is now a 6-millimeter tumor that we need to zap.  It is in the pons, which is part of the brainstem, which is hard to target and houses many important basic-level control centers (like for breathing).  It’s in the middle of the pons (which might be better than, say, on the posterior surface where I think that respiratory center is).  So next week I’ll have the appointments to set that all up (another MRI, etc.) and week after next, probably on the 14th, I’ll get zapped for the third time.   Woo hoo.  The radiation oncologist has really relaxed since we first met him but he still doesn’t crack a smile at my jokes.

I think that’s it for now–that’s a lot for two weeks. I’m hoping for a calmer next two weeks, despite zapping my brain, and an even calmer rest of April for recuperation and catching up on work.

OK, when was anything I ever wrote actually “quick”?

So, a quick report on our vacation in the Florida Keys last week.  We stayed at three Airbnb places.  First, three days on a small houseboat anchored in a shallow bay near Key West, a 20-minute kayak paddle from shore.  Very small, no privacy, lots of climbing and clambering to use all levels inside and outside.  Very fun!

Then after an afternoon at a beach park in Key West, we moved halfway up the Keys to Marathon, staying at a house in a working-class neighborhood near a fishing dock.  That night, Wednesday, I noticed when getting ready for bed that my left arm was quite swollen.  It didn’t hurt and I hadn’t noticed any swelling earlier, but maybe there was the beginnings of it earlier in the day.  In any case it didn’t seem like a good development at all, so Eric and I went right off to the emergency room, which was only about a mile away: Fishermen’s Hospital.  On the way in to the ER was a big display case of fishhooks that they had removed from patients.  Will & Jesse stayed “home.”  Good thing they are teens now.

At the ER it took forever but eventually I got assessed & got an ultrasound to look for obstructions in my veins.  There was something there but it is in a vein under the clavicle so it was not possible to tell for sure what was wrong with ultrasound.  The suspicion was a DVT (deep vein thrombosis, aka blood clot), which is dangerous primarily because if the clot breaks loose it can lodge in the vessels of the lungs and interfere with oxygenation (this is a pulmonary embolism).  So I had to go to a bigger hospital where I could have a “venogram,” which as far as I can tell is an angiogram for veins rather than heart vessels.

By the time this was all decided, it was about 5 AM and Eric and I had been up since 7:30 AM.  It was more than two hours to the transfer hospital at the south end of Miami, and longer with traffic.  So even though the ER would have let us drive ourselves, the ER doctor also said an ambulance could be justified given the urgency and the situation.  So we chose that; I went in the ambulance at 6:30 and Eric went home to the house to sleep and be with the kids until we knew what was next.

I dozed in the ambulance and it took almost three hours to get there.  At Kendall Regional Medical Center the ER doc pretty quickly set me up to have the venogram as soon as the vascular surgeon & interventive-radiology suite were ready to squeeze me in.  That finally happened around noon, and so by 1:30 I was in the recovery area for an hour’s (somewhat neglected) recovery, while everyone who you’d think might be taking a bit of care of me was instead trying to figure out whether I was going to be admitted or discharged or sent back to the ER or what.  Apparently they never send people back to the ER from recovery.  But in this case that was what the ER had planned so that was what happened.  Until then I thought I’d be admitted for a night of de-clotting and observation.

So, back to the ER.  When the ER doc came along around 3:00 he said I was getting discharged after getting started with a blood thinner (Lovenox, which is low-molecular weight heparin aka LMWH).  He went off to call my oncologist to confirm that it was ok with chemo and give him the scoop.  I called Eric and said “come get me.”  My main concerns were: 1) can I eat now, finally? and 2) can I put on my own clothes instead of this ridiculously large gown?  Somehow I didn’t get to ask these questions because there were so many other things to find out, decide, and do whenever there was a health-care provider in my room.  Eventually my nice nurse José came with the drugs.  He gave me one half-dose of Lovenox to show me how to do it, then I did the other half dose.  It is a liquid that is injected subcutaneously (twice a day, in the belly fat).  Oh joy. Luckily I have learned how to give injections before…just not on myself.

By then I head read my discharge paperwork and noted that I was officially discharged at 3:30 pm.  Since it was now 4:30 or so, I figured that yes, I could eat.  So I ate two oranges.  Then José brought me some iced tea and an ice-cream bar.  I lounged around Skyping with my mom for a while, then decided the food was ok but the service wasn’t so great and went out to the ER waiting room to wait for Eric.

At 6 Eric and I found each other and went to the pharmacy and then got some food and then drove back to Marathon (about two hours).  Whew.

The next day, Friday, we spent most of the afternoon at Bahia Honda State Park near Marathon, which was pretty nice.  Good beach.  Portuguese Man o’ War jellyfish washing up onto the beach, which is dangerous because their tentacles sting very painfully, but they float and bob around on the waves, and are purple and blue with a big inflated part, so they were easy to spot even when only a few inches long.  Eric and I ended up reading on an uncrowded part of the beach and swimming a bit while the kids sat in the car in the parking lot on their devices.  Ah! Vacation!

From there we drove north again, off the Keys, to Homestead (SW of Miami), where we stayed in an agricultural neighborhood at a guest apartment attached to a house in the middle of an avocado grove.  Tranquil.  In the morning we eventually packed up and took off for a driving tour of one part of the Everglades, which we entered only 20 minutes from where we stayed the night.  We drove and stopped and went on nature walks on boardwalks and saw some cool stuff.  Finally picnicked and drove out and away to Fort Lauderdale to the airport, and eventually flew home.

I am feeling rather tired and beat-up.  I’m pretty sure I’ll be on this blood thinner for many months if not longer, but other than that, am not sure what else is going to change as a result of the DVT.  My left leg has been really bothering me for weeks (months?) in a sciatica-like way that is not apparently sciatica, and that was pretty bad on vacation.  There are good days and bad days but overall it is getting worse.  I have been trying to get it better with acupuncture, massage, chiropractic, etc..  Now I can’t take ibuprofen to help with the pain because of the blood thinner.  And my left armpit and shoulder have been mysteriously hurting me since Thanksgiving when I walk, so I hope that turns out to be clot-related and will eventually get better.

The Tylenol I took for a few days stressed my liver (as Tylenol does…) so when I went in for chemo yesterday, my liver enzymes were high and my oncologist said to come back Friday to see if they have gone down enough for chemo. I hate disrupting the chemo schedule.  When I do, everything goes wonky in the rest of my life’s schedule!  Plus it makes me very nervous to skip weeks of chemo.

Instead of chemo we had a long discussion of the DVT, the shoulder pain, the leg pain, and pain relief options.  I went off for a leg ultrasound (to rule out more DVTs) and a femur X-ray (to rule out lesions in the bone) and I will get a full-body bone scan as well because, well, it’s been 16 months since my last one.  And Friday I have an appointment with a vascular surgeon to talk about the DVT and follow-up, precautions, etc etc. Yeesh!

This update goes on an on but trust me, I am leaving out some non-essential but confusion-increasing twists and turns.

I had my 3-month CT scan February 10th.  At an appointment to discuss the results two days later, my oncologist said that the radiologist’s report said the metastasis in my lung had grown a bit (one dimension had been holding steady at 1.4 cm and is now 1.9 cm), which meant it was becoming resistant to the chemotherapy.  We discussed options.  I had a “we knew this day would come” sinking feeling.  Is it all going to be harder and more confusing from here onward?  Besides waiting for a more clear signal of growth, or switching chemotherapy, the other option was to use stereotactic radiosurgery on the lung met.  If the rest of me was still responding well to the Eribulin, but this lung met had developed resistance, we could kill it off and I could go on my merry way with Eribulin for longer.  That seemed like a bearable plan.

But he called me later in the day to say the latest version of the CT report–not the preliminary report he had had in the morning–actually said the lung met was stable.  Whaa?  Later he reviewed the images himself with a radiologist and told me “you could go either way” because something is measuring bigger, but is it tumor or is it associated collapsed lung tissue?  No one can quite tell.  So that was nice news.  But we stuck with our plan to have me talk to the radiation oncologist (the brain-zapper) because if the lung met had grown, we could zap it. The idea of getting that lung met off the list definitely had some appeal.

Then on Friday the 13th (oh yay) I had a follow-up brain MRI to check results of the January zapping.  (“What? I am having a brain MRI to check for brain tumors and you want me to have it on Friday the THIRTEENTH?”)  But I did.

On the 18th we met with the radiation oncologist.  The MRI showed good response to the zapping of two mets (yay) but one tiny little worrisome dot in the brainstem is still there.  We wanted it to disappear, which it didn’t.  But at least it’s not any bigger. Good news, bad news, good news.  Next, more bad news:  he spotted another little tiny stable dot somewhere else.  “This is most likely a tumor also,” he said nonchalantly.  Great.  Hey buddy, this is your something-thousandth brain met so it’s all in a day’s work to you, but to me, hey, this is only my…counts on fingers…8th or 9th!  So show some respect.  (Dot #2 was on the November MRI but wasn’t noted then, and it wasn’t on earlier MRIs.  So yeah, most likely a tumor, but again–good news–not any bigger for 3 months).

But the real kicker was when he reviewed the CT scan with us.  I like this guy because he calls up all the images on the computer and lets us look, and fiddles with them and compares them, and we get to see how he does it.  It’s kind of mind-blowing to realize that though they use high-tech machinery and chemicals and stuff and measure things by clicking with the mouse, in the end, they are just LOOKING AT PICTURES and deciding whether deadly growths have grown or not.

So anyway, he calls up the February CT scan and the November CT scan and we compare them.  He does some measuring and doesn’t come to any conclusions that way, but we all agree that the met looks “fuller” or “more plump” or “filling in” compared to how it looked in November, despite maybe measuring almost the same in its extent.  This met is like a little raisin with a couple of tentacles, and the tentacles are the collapsed lung tissue (or atelectasis).  So the open question is: is the fullness caused by tumor cells growing out from the main tumor along the tentacles, or is it just more collapsed lung developing at the margin of the tumor?  The zapper is not sure, but thinks it is probably tumor growth.  Which means we should zap it, because that means the Eribulin is not working on that tumor anymore.  If we zap it successfully, then I can stay on Eribulin because it is working everywhere else it is expected to work (meaning, not in the brain but in the body).

But that’s not the kicker.  Because next he says, contemplating the scans on the computer, “If I were betting, though, I would bet that this is a primary lung cancer, not a breast-cancer met. It looks like one.  Breast-cancer mets in the lungs are not made of lung tissue–they’re a foreign type of tissue, so they grow in a ball and push the lung tissue outward.  Not in a blob with tentacles like this.” (Well maybe he didn’t say “blob with tentacles” but that’s what he meant.)  “Have you ever smoked?”

WHAT?????  So I tell him a) I have never smoked a single cigarette, and b) what are the chances that I would be discovered to have stage IV breast cancer and primary lung cancer at the same time?  Come on, now.  He agrees that it seems unlikely given the circumstances, but still….it sure does look like a stage I lung cancer to him.

“Stage one!” I say. “That’s the first good thing you’ve said all day.”

We determine that yes, I had the sternum met biopsied and that one was definitely breast cancer.  And no, I didn’t have the lung met biopsied.  So do I want to biopsy it now?  Because if it’s lung cancer the standard of care is to do surgery, remove the upper lobe of the lung where the tumor is located, and take out the lymph nodes nearby.  “What about this situation is standard?” I ask incredulously.  He takes my point. He says that though lung surgeons would certainly want to operate, surgery might rev up the metastasis in my body and that would be bad. So he would suggest zapping it instead, the way they do when someone with lung cancer is too frail to withstand surgery.  The “control rate” is not proven to be quite as good as surgery, but the side effects are less frequent and less severe.

The zapping is a bit more complicated than the brain zapping–five treatments over two and a half weeks, and they have to restrict my breathing some so the lung doesn’t move during treatment, and there is a risk of rib damage from the edge of the radiation field.  But basically, a low risk of side effects, and I still have a whole right lung (which I dunno, I feel I need to keep if possible).  Besides, if he only gets to zap frail people, I probably am less at risk of side effects than them, right? Being not frail.

“So,” I sum up after a while, “whichever it is, we would zap it. So therefore why would I biopsy it? A biopsy doesn’t give me information that changes how I would proceed.”

Though he sheepishly says, “Just to know?” he agrees that there is not a strong case for biopsy.  He says he’ll review the CT scans with a chest radiologist and argue with the lung surgeons over me.  “They’ll be mad at me,” he says.  I say this situation would make a great Grand Rounds presentation about uncertainty and patient choice so he must invite me when he presents it.

Whew.  What a roller-coaster.  We leave and I begin trying to figure out how lung-zapping is going to fit into my chemo schedule and my non-cancer-related life in the next month or so.

Then the next day my oncologist calls, having gotten the latest update from the radiation oncologist.  The consulting chest radiologist (whom the oncologist thinks highly of) also says it looks like a primary lung cancer, but says he doesn’t think it’s actually growing.  And when I inquire, my oncologist says sure, he’s seen breast mets look like this before.  He agrees that the lung-cancer hypothesis is a little hard to swallow given the circumstances.  So, given all the opinions, he comes down strongly in favor of this plan: no biopsy, for goodness’ sakes no lung surgery, and right now no zapping, either–just wait and see what the next CT scan says in three months.

And that’s where we are.  At least until the next phone call.

An article right up my alley by Susan Gubar in the New York Times.

http://www.timesunion.com/news/article/CDPH-cancer-doctors-reach-deal-6040213.php

What a relief.

It’s Monday and Eric and I spent an amazing weekend in New York City, which we never do. (This was maybe the second time going to NYC for fun since we moved to New York State in 2002–just haven’t wanted to, mostly.)  I was pretty low-energy on Friday, when we went, but had plenty of energy on Saturday.  We came home Sunday morning.  We took the train along the Hudson, which is so beautiful!  The ice was amazing.

Today I got back to doing interval exercise (cardio, aerobic) after more than a week off, though I did do some walking in the meantime.

In the city we saw the Henri Matisse Cut-Outs special exhibit at MoMA, went to a play, went to a clothing store I wanted to visit where I found a new kind of clothes to buy, and ate Ethiopian food and Vietnamese food and famous vegan food-truck  food.  We stayed with a friend (thanks, Mercer!) and took the subway a lot.  But also did as much walking as energy allowed.  We took a fictional history tour of the High Line and its neighborhood, run by Story Tour, and wandered around in Times Square a bit to see how it has changed.  We planned just the right amount and let whim and serendipity guide us the rest of the time.

Before the weekend I spent time feeling fatigued and a bit loopy due to the brain zap & the just-in-case anti-seizure medication.  But we still managed to get household things done and do some good Online Writing Workshop work.  Chemo started up again uneventfully on Thursday (also this coming Thursday).  And that’s the news.

The zap on Thursday was much quicker and easier than last January, and now I’m feeling low-energy (as expected) and fuzzy in the brain (also expected, due to temporary anti-seizure meds I have to take just in case for a week).  My mom is visiting to help out and I am spending much time on the couch in front of the warm masonry heater!  Chemo starts again on Thursday. More news later.