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.

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.

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.

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:

Wednesday I had many visitors to keep me company, including Gina who brought an amazing, delicious lunch almost entirely in Mason jars.  Tapioca pudding with coconut milk…ah so slimy and good, like eating frog eggs.

That afternoon I moved to the Oncology floor, where I finished out the day with Eric for company, finally felt good enough to take a little walk around the halls, watched some episodes of “Scrubs,” and eventually tried to sleep through many of the usual nocturnal hospital disruptions. Here we are on Thursday and I woke up feeling pretty good–better than lately at home. I’ve been checked on three times by Dr. Shaffer from my oncology practice, who is on call. He’s Jens’s oncologist, and reports that he is very nice are true.

This morning I spent about an hour off the oxygen, what with showering and stuff, and then got my oxygen level checked and it was 94.  On oxygen it’s 96.  So that was very promising when thinking of going home later today. I just did an official walking saturation test to see if I desaturate while walking  I had to walk rather faster than I usually do these days!  I think 91 was how low I got.  So…that was a success.

The plan is that I’ll get a third dose of IV broad-spectrum antibiotics any minute now, then decide whether I’m ready to go home this afternoon or not.  I think I will be.  I’ve got a pill version of the antibiotic waiting at the pharmacy for tomorrow and beyond…probably far beyond, to really knock this thing out.

Nobody wants to be in the hospital, and in fact I’ve been quite proud of staying out of it besides the ER visits in March for the DVT, but it was quite clear to me this week that I needed to be here for a while.  I was willing to give up all those liberties you give up in the hospital, like wearing your own clothes, and getting a decent night’s sleep, because I felt so rotten and I knew just rest wasn’t going to fix it.  (I just didn’t know I had pneumonia.)  Well the sleep thing was certainly true, but not too bad, and I got to keep my clothes instead of a gown the whole time through three different units and a slew of nurses.  Interestingly, I think I had four male and three female nurses all told.  They were all nice.

Next up in our series of educational posts on cancer and its associated problems, lymphedema!

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!

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)

So I figured this out at home just in time to go to California on a solo trip, where I spent 4 nights in 4 different houses, doing some Midwives Alliance work and seeing two of three sisters & their families.  And here is what I wanted to reflect on.  Pillows surrounded me in great abundance.  I said what I needed ahead of time, and I surfed along on my trip on a sea of cushy lent and gathered pillows that meant I got really good sleep (better than the previous week).  This makes me want to cry.  I asked, and I got, without fuss, and it was so easy for me.  So many people don’t get to have that experience and here I was, surrounded again by love and abundance.

Which I really needed, because from one perspective, the whole 5-day trip was an exercise in physical disappointment and frustration. I was fatigued, noodle-legged, short of breath, quite hoarse, coughed the weird cough, and ran out of all kinds of energy over and over without really taxing myself in a way that would make running out of energy “make sense.”  Did you know that when you get off an airplane, the ramp angles upward?  It’s a hill.  Who knew? I ended up feeling like I had gone on a trip, not alone, but with my body, which was a separate traveler who needed special care from me at all times, kind of like a toddler.

I had real fun seeing my friends and relatives, eating ethnic food, gathering my frustration and anger together in order to really shake Deb’s apricot tree so the ripe fruit would fall down (we harvested 21 pounds of delicious irresistible little apricots), and doing some brain work right after our Midwives Alliance Division of Research phone meetings to pull a meeting report together.  (Ahh! Brain power! Traction progress accomplishment!)  I did as much walking, or strolling, as seemed reasonable, and it wasn’t nothing.  I got caught up on peoples’ lives and had at least one real conversation that I really appreciated.  And, to top it off, I ate some really good ice cream.  Twice!

(P.S. Yes I am working on figuring out the cough and other new symptoms–appt. with neurologist next Wed.)