Yesterday I got admitted to Albany Med for a little cerebellum bleed discovered when doing pre-admission CT scan for the Ommaya reservoir surgery Tuesday.  So now it’s the next day and I am at AMC being checked every hour for neurological status, which is fine so far, despite a couple medium headaches.  Tylenol worked! I will be here most likely until tomorrow. Eric will be home this afternoon from his California work trip. My mom is here too until tomorrow.

First I heard no surgery Tuesday because of this. Then I heard surgery Tuesday anyway. My oncologist stopped by this morning to visit and said it would be up to the neurosurgeon, which is fine with me.  If the bleed is all over, I guess I could see surgery going forward. I had a repeat CT scan midday that should tell us whether the bleed is over or continuing. If over, I am likely to go home tomorrow and maybe even have the surgery Tuesday. In the meantime, I have been visiting with Will and Spee, taking walks around the halls with my cherry cane, and hoping to watch a movie one of these evenings, or read The New Yorker.

It looks like the bleeding came from a new metastatic lesion in my cerebellum–a very small one, but one that wanted to build some veins in a hurry.  I don’t think I will be able to take blood thinners after this, so the question will be is there anything to prevent anymore clots or emboli.  Because my clot and previous emboli came from my upper arm area, there’s not much to be done.

But right now I am going for a walk in the halls and to try a teeny bit of Qi Gong with Spee in my curtained alcove.

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.

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.

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.

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 Jesse’s floor, because I might trip or bang into something.

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.

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.