Sick

Last Thursday & Friday we met with the neurosurgeon and the radiation oncologist (at Albany Medical Center) to find out more about my brain situation and plan my stereotactic radiosurgery. It really does look like an ideal treatment for relatively small brain metastases (such as mine). I am the type of patient for whom this treatment is often done, and it is often done at Albany Med. Unfortunately this means that they are very busy and I will have to wait until mid-month or the second half of the month to get zapped.

I am learning a bit about this organization Sharsheret and was really happy to watch this video interview of the founder…and note the date it was done: December 2010.

Last Friday, a week ago, I got home at 5 after the CT scan, bone scan, and signing up for the trial, went for a walk, and my phone rang at 5:39 with a call from "RESTRICTED."  It was my oncologist calling from home to say that the CT scan showed spots in my brain.  He hadn't seen the CT scan, just gotten told about it from the MD on call.  He told me we had to go get an MRI ASAP via the emergency room to make sure there was not dangerous swelling and to see if I needed steroids or anti-seizure meds.  Yikes.

So we went to the ER that evening. Got there at 7:15, eventually got neurologically checked out by the ER resident and the attending, and met the neurology resident.  He said of the CT scan, "I saw the two spots, but I am not impressed" which made me laugh.  Many nice people at the ER.  Much slowness. I kept having to remind myself, when I felt panicky "what am I DOING here?" feelings, that I was only in the ER because that was the way to get an after-hours MRI.  There was no emergency.  I was not emergent at all, really.

I got the MRI starting at around 10:30 (Eric got to be in the MRI room, with earplugs and ear protectors and everything).  The MRI folks were nice too.  An hour of NOT MOVING MY HEAD got pretty difficult in the end due to a fold in the sheet covering the headrest, or something…slight discomfort because weird ledge-like feeling became a BAR OF FIRE because I wasn't allowed to move.

Then we waited another long long time for the neurology resident to read the MRI and talk to the attending neurologist, Dr. Kenning, who was at home.  This was when I started to feel a bit like an animal in the zoo pacing around my cage.

So I seem to have two brain mets that are so far not causing any real symptoms anyone was impressed with.  I said my eyes had been kinda blurry all day until evening, I said I had a headache but not a big one and wouldn't you if you'd spent all day at AMC getting injected and scanned and then come to the ER?  None of that really worried anybody (although vision changes are an effect of brain edema).  There were many tests to assess my neurological intact-ness, meanwhile Eric and I are programming a new feature to MANA Stats on his computer or I am reading the New Yorker or we are playing this really tricky videogame.  Finally the resident reported that it looked the same on the MRI, 2 lesions, minimal swelling, and since I was showing no signs of any problems and was "neurologically intact" (*New Yorker* reading, check; programming, check; and the game was a real brain-twister) did I want to go home and come to see the neurologists on Tuesday?  Well yes indeed I did.  No steroids? No, no need for steroids.  We left at 1:45 am.

So this is additional bad news for sure.  However, it ended up not messing with our trip--although from Friday night to Sunday evening we figured we weren't going to New Orleans after all, due to having to see the neurosurgeon. However, he called Sunday and said that we should go, that he would start setting things up the week I am back, that we wouldn't lose any time in the treatment plan if I just came in a week later since it was Christmas week etc.  Great!  So unexpectedly, we went, and I am currently sitting in my mom's living room in her newly-acquired house in the Marigny neighborhood of New Orleans, having just walked all over the French Quarter with Eric.  The only trade-off was having to take low-dose steroids just in case of swelling while I am gone.  He said if he had actually *seen* me then maybe he would feel comfortable without me taking anything, but under the circumstances...

Next week we'll meet with the neurologist and the radiation oncologist and they will have figured out whether they can treat the mets with stereotactic radiosurgery (http://www.nlm.nih.gov/medlineplus/ency/article/007274.htm or http://www.abta.org/care-treatment/treatments/stereotactic-radiosurgery/) or with regular surgery.  Whole-brain radiation, which scares the crap out of me, is not used unless those other two won't work.  The mets are in the left motor cortex and the cerebellum and the neurologist said they look, so far, reachable by radiosurgery.  So that's…good?  Because of where they are, I am now on the lookout for right-side movement problems or weakness (none) and problems with balance & coordination & walking (none).  Also worse headaches than I have occasionally been having, and worse vision problems.

When the mets are "stable" then I will be eligible for a trial again…until then, I'm not.  So that's another piece of immediate badness.  And at the big-picture level, it makes my prognosis worse.  Hard to treat the brain.

Moral: *Never* answer a call from an unrecognized phone number if you have advanced cancer!

Dateline: Albany Medical Center Imaging Center

One of the hard parts of this is how little certainty there is, at all levels big and small.  The most obvious uncertainty is about how many more years I get and how I will get to live them.  Then there’s the more immediate: after a consultation with Judy Garber at Dana-Farber on Tuesday, and a long meeting with my oncologist at Albany Medical Center/NY Oncology Hematology on Wednesday, we still don’t know which treatment I’m going to be starting.

That’s what my surgeon said to me Tuesday afternoon as I got myself comfortable on the operating table at Albany Med’s somewhat sketchy-seeming “South Clinical Campus.” “Ready to be deported?” It took me a second. She was about the take out my port. I was ready.

It was truly weird to be fully conscious and lying there with a drape in between me and my right collarbone area while Dr. P. bustled around, injected some seriously burning lidocaine, and started pulling stuff out of me. First the catheter that went from the port into the subclavian vein, then through that vein to the superior vena cava near my heart. That was easy to remove. She sewed up the “track” the catheter made with a stitch or two and apparently that was enough to both close the hole in the vein and keep a hematoma from forming. (I know all this because I asked lots of questions. I asked lots of questions because it was far too weird to be lying there talking about something ELSE while this was going on. I tried that when the nurse asked me about being a doula, and it felt weirder and weirder to try to be two people at once: one being operated upon and one having a totally separate conversation. My hold on calm reality started to loosen.)

I’m done.

With the whole slash/poison/burn series of treatments for this summer’s breast cancer, at least.  Today was my last zap. We keep getting asked “So now how do they know if it worked?” or “Test results coming back okay?” and we keep explaining that they–we–don’t know.  That there are no test results.  That all of this (beyond surgery) was Just In Case.  That the jury’s out for oh, the next 5 or 10 years…ask us then and we’ll have an answer.

I have been following the story of an NPR reporter who has cancer (he has a blog).  I found this posting of his pretty on-target.

That’s because when it comes to cancer, hair is the marker of sickness and wellness.

…I am still here.

Radiation every weekday 25 minutes away is a good excuse for not doing much else on the cancer-patient front. But I have done some else: a visit to the gynecologic oncologist to talk about ovaries, follow-up with the surgeon, a date to go back to the OR to get my port removed (1/23), and lots of reading. My lifetime risk of ovarian cancer is around 44%. This is of a cancer that is only caught at a curable state 25% of the time. Makes one think.

…and I am finding myself a little annoyed at how my head is turning this funny dark color.

I’m four treatments into radiation, which is daily, at 10:30 AM at Berkshire Medical Center. On the efficient days, I walk in, say hi to the techs, change, go into the zapper room and lie down, they position me, they put in the beam-benders and beam-blockers and leave the room and zap me. Then return, adjust the machinery, put in the second set of -benders and -blockers, and zap me again. Each zap is about 30 seconds. During which time the bright lights in the room go on, a red light on the ceiling that looks like a police-car light goes on, a buzzing noise fills the air, and silently and undetectably the machine beams radiation through my left breast. I lie there counting my breaths and trying to figure out how to visualize something positive about this instead of thinking of the Russian ex-spy who just died of radiation poisoning in London. Wish me luck.

Okay, okay, so I’ve been trying to pretend life is it’s old boring self and haven’t had any blog-worthy thoughts in a while. Here’s something I didn’t ever relate, though: during my second chemo treatment, Eric led me through a visualization of the chemo drugs as light filling my body and shining all through it. For the next two weeks, although I didn’t feel so hot, people kept telling me I looked “luminous” or “glowing.” What’s up with THAT?

Sounds great but today, day 3, I feel rotten. So I don’t feel done with anything yet. Although the chemo nurses blew soap bubbles at me when I was ready to go on Tuesday:

Tuesday evening I felt like I had been hit all over with a sandbag (pressure evenly distributed). Yesterday my mind was sharp but I was very tired (not sleepy, body tired) and spent the day in bed as much as possible. Today my mind is fuzzier and I am still tired. Queasiness held off a bit until today, which was nice. It’s not too bad, and my flu-head (chemo headache from the Cytoxan) is worse than last time but no worse than the first two times.

I realized on Sunday that what I’m doing with all these hats and bandannas is covering my head. It feels like covering. What I was doing in 1995 was hiding my head. No one else can probably tell the difference, the times I’m covering my head at least, but I can. What a relief.

There are two ways to go with the work/chemo juggling: you can go full-out, plan to live your Whole Life and make adjustments as needed as you go along–this will keep you feeling safe and normal as much as possible but will be hard work and things will go by the wayside unexpectedly (perhaps just the laundry, the dust in the corners, and the quality of lunchbox fare). Or you can decide that now is your time to lie low, take care of yourself, cut down on work and responsibilities, learn what you need to learn, explore other modes of healing that appeal to you, and do things you never give yourself time to do because of being a creative busy working mom (like read novels and hang out with friends? if you’re me).

It’s Friday night after chemo on Tuesday. Today I took the exam to be a Lamaze childbirth educator, which was administered in Springfield, MA. My excellent friend Lisa drove me there and back, which was key to making this crazy plan doable. The exam itself was fine–all multiple choice, on a computer, felt like a quiz game–except that when it first came up it was in Spanish. That meant over an hour’s delay while the testing center downloaded the correct test. So I was pretty tired by the time I finished and we drove home. I spent the rest of the daytime in bed reading (The Time Traveler’s Wife, excellent) and got some more energy at about 8:00 at which point Lisa and I did some henna on each other. Now it’s bedtime and I’m not feeling too bad–less queasy, and overall the flu-like headache hasn’t been so bad this round.

Today was my chemo-spa day again. We ran around ahead of time trying to get stuff done, but I did have time to do my mediation practice and have my flax-oil smoothie for breakfast. New York Oncology Hematology was really busy…more busy and behind than we’ve ever seen it. Apparently yesterday was even busier, at least in the chemo infusion room. Our nurse Amy (who again wasn’t our nurse this time–rats!–but she snagged us a seat near her desk again) said she had 27 patients yesterday and she usually does about half that in a day. So we got started with the chemo an hour late, almost, and didn’t finish until nearly 3:00. That was okay, because I don’t find the chemo infusion itself stressful and I don’t really mind being there. I never take work or catch-up stuff (bills, etc.) or my computer, so I just talk to Eric, read books, talk to the nurses, and relax.

At the MANA conference’s closing session I began my career of wandering around bald with no head covering. As we stood in a huge conference-hotel ballroom in a large (250 people?) circle, I was kinda daring myself to take off my bandanna. After a while I said to my friend Wendy, “I could take off my bandanna. What do you think?–No-no-no! I shouldn’t ask you what you think. I don’t care what you think.” Then I said to myself, “Oh, how hard could it be?” so I took it off.

Then I got many hugs and kisses upon my head. That was gratifying. I showed off my head until we went out to dinner.

Looking for dinner, we walked through the Inner Harbor area (stores, restaurants, many tourists) and Wendy asked, “Do you care that people are looking at you because of your head?” I said, “Are they? I hadn’t noticed…so I guess I don’t care.” That was interesting. We had been having a good conversation so I just hadn’t paid a bit of attention to peoples’ reactions to me–a lack of self-consciousness that felt very unusual for me.

Since then I haven’t really held at the forefront of my mind how people will react to me and my bald head (covered or not). Now (in my ongoing evolution as a bald person) I don’t really care much whether my head is covered or not around people I know and like. If I’m cold, I have something on my head…if I’m hot or itchy, I take it off. Sensible, no?

Tomorrow I am going to Baltimore for the MANA conference (that’s Midwives Alliance of North America). My hats and bandannas and I will be home Monday night after going to presentations, giving a presentation, going to the Division of Research meeting Monday, and hanging out with my MANA friends throughout, which I greatly look forward to. Perhaps there will be henna.

Oh! I made a first experiment in head henna with the help of my friend Arti. Here is a picture. The sexy hennaed forearm is Eric’s.

After chemo last Tuesday, my awesome nurse Amy suggested we try to call in a prescription for Neulasta and see if my insurance company would cover it that way and give it to me for $50 (my highest drug co-pay). Then my doctor in Chatham could stick me with it on Wednesday and I wouldn’t have to come back to Albany for a 3-minute appointment.

The CVS down the street from Albany Med had a dose to prescribe for me…we went to pick it up…it cost $50. List price on the receipt: $2856 or something. We took it home and put it in the fridge, and the next afternoon Dr. Jeff in Chatham did the honors and I paid him the usual $25 co-pay. The instructions for the Neulasta said, and I kid you not, “Remove injector from carton before injecting.” They don’t mess around telling you exactly how to use such expensive medicine, I guess.

So: round 1 Neulasta? Over $6,000 all told. Round 2 Neulasta? $75 total.

Health insurance is so deeply weird.

And Dr. Jeff points out that New York Oncology Hematology is criminal for charging that much for a drug. After all, it only costs $2856. How do they think they can get away with charging over twice that much? (See previous paragraph for the answer.)