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.

This is because I am going to do a clinical trial in which all subjects are randomized to one of two “arms.”  2 out of 3 subjects get the experimental arm with the drug BMN 673, a PARP inhibitor (see the study description if you like).  1 out of 3 get the control arm, with standard treatment.  In this trial, standard treatment can be any of  4 chemo drugs, based on the oncologist’s and patient’s choice and how far along the patient is in her treatment story.  I am signing up for the trial and hoping I get the PARP inhibitor because that’s what everyone thinks has the best chance of working for longest.  Also, it’s pills–not IV–which would be nice.  But I won’t know until I get randomized which arm I am in.  (This trial is “open-label” so you do know which treatment you get.)

More about PARP inhibitors over there–>.

And just to make things more complicated, one of the four standard-treatment drugs is one that my oncologist would really be happy to give me–another one that seems to work well for BRCA1 disease–and we thought that since it was listed in the trial he would be able to give it to me even though it is not approved for “first-line” treatment of metastatic disease.  This just means it’s approved for use after someone has been on a couple other chemo treatments, not as a first treatment.  And this is how most newer drugs start out being approved–for later stages.  Then if they seem to work well, they are promoted up the line (via clinical trials testing them) until they are used for anyone at any stage.  Or maybe some are shown to have side effects that limit them to later stages of disease.  Anyway, this drug, Eribulin, would be a great second choice for me, but it is unlikely that my insurance will pay for it to be used earlier than it is approved for.  So Dr. Collea & his billing people are finding out whether the insurance will pay or not.  If not, I could pay for it myself but it is wicked expensive.  Or I could try a more standard treatment (Zeloda aka capecitabine), which is an oral medication too.

So right now I don’t know lots of things:

• whether the disease has progressed and/or how much (to be determined maybe via today’s scans, though maybe they are apples-to-oranges compared to the previous scans)
• whether I am going to get the suspected best drug or not for me right now
• whether I am going to be taking an oral medication or an IV medication delivered on days 1 and 8 of a 21-day cycle
• of course, whether whatever I get will work
• what I will end up taking if the first thing doesn’t work (a decision that is made only 6 weeks or so after I start)
• how long I will feel totally healthy
• etc.

So that’s the bigger scale.  On the smaller scale, I have to learn to roll with change too.  I came to Albany Med this morning at 9:30 to get injected with radioactive “dye” for a bone scan.  It takes 4 hours for the uptake into the bones to happen.  I have to have a CT scan too today, and though the schedule people tried to get the CT scan scheduled for sometime in those 4 hours, they couldn’t, so my bone scan is at 2 and my CT scan was at 3:40.  But when I got the dye injected, the nuclear medicine people called the CT scan department to see if I was not supposed to eat between now and then, and instead of a yes/no answer they said they would just do the CT scan before the bone scan.

I had sweetened the all-day-at-Albany-Med deal by planning a walk to my friend Dorian’s house for lunch during these 4 hours, thus getting exercise and friend-seeing into my day.  Also I was going to meet with the oncology trials nurse, Joanna, to do my health history and sign the consent forms for the trial.  Instead (roll with it) I am sitting in the waiting room having drunk the “berry smoothie” (berry…barium…how cute) for the CT scan.  You have to wait an hour after drinking it.

Medium scale: I had to cancel today’s work plans when these tests got scheduled yesterday.  Roll roll roll.

I am lucky to be at a place that can do things like CT scans and bone scans with only a day or two’s notice.  And they have free wireless…now if all the TVs in all the waiting rooms would break, I would be all set.

Dana-Farber was so elegant and fancy, they would NEVER have TVs in the waiting rooms…I think they might have a clue that TV, especially non-consensual TV, is not an element of a healthful environment.  But D-F is 2.5 hours away in good weather at high speed on the Mass Turnpike.  And as we found out on Tuesday evening, it is crazy in the snow and it can take 4.5 hours to get home…it was an epic journey.

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.)

It was apparently harder than usual to get the port itself out. I guess a little too much me had grown around it, plus it was a smaller port than usual and maybe harder to get a grip on. Plus I think the way the operation is done, the calipers are inserted into the incision and then blindly put around the port under the skin, well, never mind these horrifying details. The port was a little bigger around than a quarter, metal with a plastic disk at the top, and about 1/2″ or 3/4″ high. It was really cool looking and I desperately wanted to keep it as a souvenir, but they were so totally not allowed to let me have it that I couldn’t convince anyone to bend the rules. But that was after it was out. Dr. P. had to switch calipers and tug and tug and tug to get the thing out, which felt truly horrible. In fact, what I could feel of all that yanking felt so horrible and distressing that I asked her to remind me that it wasn’t part of me and I didn’t need it. Finally it came loose.

They had attached a gel-covered “cautery pad” to my leg to ground me before the operation started, so I assume she cauterized whatever little bleeding vessels were in there, and I know she did a bunch of swabbing and blotting, and then sewed it up and taped on a big wad of gauze. Then I was up and off the table, threatening to go through the garbage that night to find the port, and back into the pre/post-op area feeling only a bit disassociated. 15 minutes after I sat up on the table, I was in the car riding home. I had to cadge some Tylenol from the post-op nurse because I could feel the lidocaine wearing off pretty quick. They didn’t even offer me any! And at first they said no, they didn’t have anything to give me.

So that was Tuesday. I’ve been on painkillers on and off ever since but am officially, I guess, done!

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.

Of course, in this situation, to not know is good, because the only way to know is if it’s come back.

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.