Like a dad in a drugstore: an analogy for molecular profiling

May 17, 2010

Good news to share with you today!

My molecular profiling results are IN! We don’t know what they are yet, but there’s HOPE in the air today!

What’s molecular profiling?  Well, here’s a two-minute analogy.  Imagine that your kid gets sick and you call your husband to ask him to stop by the drugstore for some medicine.

If you don’t tell him the child’s symptoms, he’d have to just stand there in front of the long shelf of children’s medicine and choose a bottle at random.  Once in a while, the random medicine would work and the child would recover.  More often than not, though, the medicine wouldn’t work, AND the child would have taken medication she doesn’t need.  Not a good idea, right?

If you tell him that the child has a cold, then he knows to choose from the array of a dozen or so cold medicines for children.  The child may get better, or not, but also he may end up taking much stronger medication than he needs.

But if you tell him exactly what kind of cold it is (cough, stuffy nose, fever), he can zero in on the right bottle and the child will get better quickly without taking unnecessary medication — and without having to wait while someone goes back to the pharmacy every couple days to try a different cold medicine at random.

Are you with me?

Okay.  So.  Cancer treatment today relies on an array of chemotherapy, hormone suppressants, and other drugs to reduce inoperable tumors and keep them from coming back.  All cancer is not the same, however, so it really helps to know what kind of cancer is at work.  Some people, like my neighbor Frank, have had cancers of unknown primary origin.  The doctors can’t tell where the cancer started, so they don’t have much help in narrowing down the specifics.  Treatment of cancer of unknown primary is in its infancy, and the choice of chemotherapy drug can be a little like choosing a random bottle off the shelf.

Those of us who are lucky enough to know where our cancer started have some clues.  We know that we have breast cancer, for example, and we know what part of the shelf to look on for the appropriate medicine.  Beyond that, we know that we have specific markers for our breast cancer — ER+, PR-, HER-2- inflammatory breast cancer, for example, which is what I have.  When my oncologist considers treatments, she’s like the father in the drugstore who knows his kid has a cold.  There are a handful of possible treatments that could work, but some won’t be effective enough, and some are overkill.

How can oncologists choose the right chemotherapy right away?  In January, researchers announced new successes in clinical trials where the patient’s cancerous tissue underwent molecular profiling in a laboratory to identify the exact targets where the cancer is vulnerable.  By knowing what the cancer really looks like, the treating oncologist can then choose a chemotherapy (drug) to treat not just cancer, and not just breast cancer, but the EXACT cancer that the patient actually HAS.  This is incredible and exciting new research, peeps.  I’ve heard over and over this year about the potential power of personalized medicine, and this is MY opportunity to try it out.

I’m excited.  I don’t know if my particular results will call for a particular treatment, but I’m so happy today that this is even a possibility.

In other news, radiation starts tomorrow. I’m not at all worried about it; we’re just going to treat it as an inconvenience until it gets all hurty and stuff.  I’ll have four fields of radiation, two in my armpit and two across my chest from different angles, so as not to irradiate my lungs or heart too much (both cause damage).  I’ll lie down for treatment, they’ll push and pull my limbs until my tattoos are lined up just exactly with the positioning light beams, and then they’ll leave the room as the machine moves into position and sends x-rays onto my skin and the tissue below. Think of it like a rather unpleasant tanning bed, where the cover doesn’t descend, but a small portion of it moves into position so that the lamp shines just on a particular part of your body at a time.  In fact, that’s what I tell my kids happens during radiation:  the light shines on my chest, and I get a sunburn.

The goal of radiation is to kill any remaining cancer cells that escaped before surgery (my pathology report showed that the cancer did escape from each of the 13 positive lymph nodes into the surrounding tissue in my armpit, but both were removed during surgery) and make the area inhospitable for cancer to return.

My latest science policy paper was accepted! Working title:  Principal investigators and project managers: insights from the Discovery line of small planetary missions.  No, it’s not bench science, but on the plus side, I don’t have to have a multi-million dollar mass spectrometer taking up space in my guest bedroom.

So there, cancer!  I’ve got the trifecta today:  treatment, possibility of new and targeted treatment, and accomplishments that have nothing to do with cancer.

Today is a win for me, not the cancer.


In summary

May 12, 2010

The days are busy!

Here’s a little snapshot of what life has been like the last two months, since my body fell apart and shook for days, cutting short my trip to the Lunar and Planetary Science Conference.  A few people have expressed surprise recently at what my body’s been up to, so I thought I’d summarize it here — you know, so we can talk about OTHER things when we’re at playdate or Mom’s Night Out together!  (It’s okay to ask me questions if you want; please just don’t feel that you need to talk about it with me!)  I don’t expect you to know all this or anything, but if you’re curious, here’s a little peek inside the window of the hustle-and-bustle before and after a new diagnosis.

1.  We tried to diagnose the tremors.  That’s one trip to the primary care and two to the oncologist.  Two medications to calm the shakes so I could function.  A CT scan, a PET/CT, and an attempted brain MRI.  Appointments with a neurosurgeon.  A trip out to retrieve the CT and PET/CT cds so that they could be interpreted and used by my oncologists.  Then, I had the cds in my hands, so naturally I popped them in the computer and looked at them.  (I don’t recommend this.)  The scans showed six “hot spots” of high levels of hypermetabolic activity, which Dr. Google quickly showed could be nothing but cancer.  The four days until the radiologist interpreted the scans and someone would tell me if it really was cancer, and what to do about it, were excruciating.  My primary care physician called me in at 4:45 on a Friday afternoon to break the news.  We heard, then set up an appointment with my oncologist to see what to do about it.  That weekend was awful.  Monday brought the oncologist consultation.  She kept me on the same medication that we changed to in February, told me it was not necessarily metastasis, and sent me to the surgical oncologist.

2. Once we had the cancer diagnosis, we went to the surgical oncologist for a consultation.  She recommended surgery to remove the nodes, and soon.  We scheduled the surgery and left for a long-planned week’s vacation in Florida, which sucked, because I spent most of the time trying to figure out whether it was right to cut the cancer out if it was a recurrence of the inflammatory breast cancer, which you never cut first.  It wasn’t an easy decision.  My oncologist is one of the top docs in the country, and she said cut.  My surgeon is at one of the top cancer centers in the country, and she said cut.  But the IBC specialists I’d heard of recommended in general not to cut.  I asked for help, and the IBC Foundation and IBC Research Foundation executive officers, who I’d helped in the past, went all-out to get me advice from their top docs.  The result? Totally mixed.  As my husband says, it’s exciting to be at the cutting edge of research, but you sure don’t want to be just past that cutting edge. It’s terribly scary.  We tried to relax, but utterly failed.  We were able to give the kids a great week at the beach with their grandparents, though, and that was important to us.  We cancelled the long-anticipated side trip to see the third-last shuttle launch, however, speeding home in one day to be with a family member (unnamed for privacy reasons) who had become hospitalized and very ill while we were away.  We got home late that night, but couldn’t complete our trip to see family as two of us were sneezing and feverish.  Not the kind of thing you want to bring into the cardiac care unit.  Meanwhile, we scheduled, and canceled, second opinions with a prominent IBC researcher and a top oncologist at another cancer center, both of which only had openings the day before my surgery, several hours away.  The kids went back to school, and we told their teachers what was going on, asking them to let us know if they showed any ill effects during the next few weeks and months of treatment.  I didn’t make it to TechSavvyMama’s girls’ night out two days before surgery, although I was happily surprised when “the moms” came to me the next night, and we had a wonderful evening together before surgery.

3. Surgery.  Surgery took several hours longer than anticipated, because the surgeon put extra effort and care into preserving and reattaching nerves, blood vessels, and lymph vessels in an attempt to keep me from getting lymphedema in my left arm to match my right.  A plastic surgeon helped fix the “wing” of extra skin that was left under my arm from the previous surgery, and they removed five inches of my previous scar for testing and restitching.  The postsurgical appointment two days later showed that the scar was forming nicely.  I was up and around, meeting with Little Bear’s teacher as scheduled, walking up and down the stairs, no problem.  By Monday I was back to my old activities, pushing hard.  A complication had arisen, however, as the wooshing and gushing inside my chest (air bubble) had settled into a golf-ball sized lump under my armpit.  The seroma was painful and made me tense.  My husband and I went back to see the surgeon, and she drained the seroma with a giant needle and no anesthetic.  When it returned, it quickly swelled to softball-size, and, we repeated this on Wednesday, Thursday, Friday.  I didn’t make it to Punditmom’s author salon that night.  My husband had his performance review, and we took the car in for repairs.  The dryer broke.

4. The next week, the surgeon drained the seroma on Monday, Wednesday, and Friday.  I finally saw the neurologist and scheduled the brain MRI.  I met with my medical oncologist and heard “no chemo.”  Stunned by this, I didn’t know how to deal with it, as I had been in mourning for my missed summer that I anticipated I’d spend in bed.  Of course I was happy, but now I was really unsure if we were really fighting the cancer!  As it turns out, aromasin is more effective than chemotherapy infusions on hormone-positive recurrences.  So if this is a recurrence of the “regular” invasive breast cancer that we suspected would arise in the left breast with the Paget’s disease, then this is totally the right thing to do.  It’s a heckuva gamble, though, and I struggled with the decision for weeks.  Desperate to be out of the house, I went downtown to a MomCentral blogger event and met Dave Barry.  We had a playdate.  I made and canceled an appointment with a new lymphedema therapist.  I went out with my local moms for dinner.  The next morning, we went in for the brain MRI, completed the paperwork, waited for our turn, and then were turned away because I would not let them stick a needle in either arm (as directed by my surgeon because of the lymphedema) and they had no option.  I saw my surgeon again, who drained the seroma again and detailed the risks of my planned travel the next day to AbSciCon, the astrobiology science conference where I was to co-lead a workshop and hold a women’s networking event.  If I were to fly, the seroma could burst (due to the changing cabin pressure).  If it burst, it would be left open to drain, causing continuous release of fluid from my armpit for three weeks to six months; the wound could not be stitched.  Adding to this, I was too tired to walk across the room without exertion.  Regretfully, I cancelled my trip and felt terrible for letting NASA down.

5. The weekend was mostly horrible.  Not only was I too exhausted to move from bed or hammock, I also developed an infection. In my armpit.  Lovely.  Of course, it was too early to recognize it on Monday, so the surgeon drained it.  It’s getting to be a routine now, Monday-Wednesday-Friday.   On Wednesday, I had a parent-teacher conference for Widget at school, where I was disappointed to have my concerns about the pre-bullying and “the fighting game” at school (which I had taken to the teachers and the principal repeatedly in recent weeks) met with an accusation that Widget was “fibbing” about the way that classmates treated the autistic child, and that “the fighting game” was not tolerated in the classroom, only on the playground.  Still, not acceptable.  Irate.  Ran late.  Cancelled seroma appointment in order to make it to the radiation oncologist on time, which was the exact same time as Widget’s interview and testing at his new school.  Drove way too fast upcounty to pick up additional copies of the PET/CT cds at diagnostic center.

6. Radiation treatment was planned.  Four to six weeks, every day, to both the armpit and chest.  Exactly what I had last time, although possibly not as long.  Lovely.  Asked for prescription cream preventively, hoping to save some skin.  Back downtown to have the seroma drained the next day. Kept up with playdate schedule, only to have friend’s kids get sick and cancel.  Infection much worse.  Energy sapped.  Surgeon’s PA prescribed antibiotic, which I took immediately in hopes that it would relieve the burning sensations in my armpit that were driving me nuts, even as my energy was draining away.  Much time in hammock over the next few days.  Husband took the kids to their weekend birthday parties, while I bailed on mom blogger fun with Jodifur, Jessica, and friends at Jammin’ Java, with concert sponsored by Curiosity Zone.  I sat in front of my computer for hours, searching for help for my kids, having to weather the news and the diagnosis and the treatment without the maturity of understanding.  I called national organizations, local hospitals, supportive and complementary care centers, and struck out over and over.  The Mothers With Cancer recommended a book by one of our members, Wendy Harpham.  I went online to order it and anything else that came up on an Amazon search under “children of cancer patients.”  Almost all the books dealt with death and loss.  Not helpful.  Or encouraging.  Ordered 7 books anyway, for me and for them.

7. Now we’re into May, but where was I at 9:00 on Monday?  Right back at the hospital so my seroma could be drained.  Really irritated with my slow recovery, lack of energy for field trips, and inability to write creatively during this time (ya think?), I hopped on to Angie’s List and scheduled visits from contractors for all those projects we’d been putting off.  Twelve contractors (three for each job) came out to give estimates that week, which made me feel like I was accomplishing something, even as I sat on my couch or went back downtown to have my seroma drained.  Again.  On Thursday, I had to admit that the infection was not healed, and the PA called in a new antibiotic.  This should work in five days, she said.  Boy, it better.

8. Radiation planning at the radiation center.  Back in the pink gowns.  Back on the table.  Another CT.  The measuring.  The marking.  Bold indelible marker (Sharpie, Susan!) drawn in long strokes on the flat plains of my chest, sealed up with clear tape to preserve it for the tattooing a week or two later.  Not painful, but embarrassing, especially when Little Bear asked what they were that night, in all innocence.  How do you explain radiation tattoos to a three year old?  Playdates.  Pediatrician appointments.  Meetings to discuss how to handle this with the children, who by now are acting out, showing the stress.

9. I quit work sometime in here, putting away even the pretense of writing the book or completing the tasks.  I stopped cleaning, running errands, everything in order to sit calmly with my kids and distract them with simple tasks that would keep our hands busy as I’d sneak in talk about feelings and reassurance that mom was doing everything she could.  We went back to church, going regularly for the first time in way too long.  We turned inward, concentrating just on each other, letting outside commitments fall where they had to.  We lost track of things and missed appointments.  We forgave each other.  A lot.  We snuggled and read books, and just enjoyed watching rain one day.  My oldest finally asked if he could catch cancer, and was surprised to hear that the answer was no.  My littlest spent days in my lap, cuddled up for reassurance.  My oldest slowly, slowly began to recover a bit, gentling his reactions to his brother, and  the acting out became less frequent.  I concentrated on them, and so did my husband when he wasn’t at work.  My mom came to visit for part of a week, and we caught up on chores and rest while she was here, and she gave the boys some quiet time with paints, tiny toy trucks, and the back yard (thanks, Mom!).  I started lymphedema treatment and physical therapy again, trying to keep the cords of scar tissue that restrict my movement at bay.

10. We’re still waiting for the second opinion appointment with Sloan Kettering.  I spent a whole day once I felt better driving around D.C. signing requests for copies of my medical records, reports, and films to fax to them, only to be told (eventually) that their first available appointment is June 15.  I can meet with the doctor then, they told me, after nearly a dozen calls from both me and my surgeon justifying the request, provided that I don’t have treatment first.  At all.  If I begin treatment, the appointment is canceled, and I’ll have to wait for completion of the treatment, new scans, interpretation of the scans, results, and a new treatment plan decision before I can make the appointment again.  And of course then it would be another few weeks for their first available appointment.

So here we are, two months and five days after surgery.  A lot has happened.  A lot still has to happen.  But I’m still here, and I’m spending nearly every moment of every day with my kids, reassuring them, cuddling them, being there for them whenever they need me.  They’re the most important part of my life, and I feel good about being able to help them, as little as it is.  I miss my work, and I’m easing back into it as time allows.  But for now, I’m doing the best I can.  Speaking of which, it’s time to pick them up at preschool.


Radiation, said the doctor

April 20, 2010

Radiation, said the doctor.

Radiation, said the doctor, as she entered the room an hour after our appointment was supposed to begin.

Radiation, said the doctor, as she entered the room after a half hour of poking and prodding by a fellow I’d never met before, intense prodding of each and every lymph node under my jacket, my shirt, my pants, an hour after our appointment was supposed to begin.

Radiation, said the doctor, as she entered the room after I’d spent the day at the hospital, having a procedure to drain my bulging seroma, meeting a medical student and recounting my history anew, every recounted step widening her eyes as I lowered mine,educating about IBC as she left, doing strength tests for the neurosurgeon who towered over me, agreeing to another MRI, scheduling appointments, giving blood pressure by pulling my left pantleg up, and wincing, insisting to the nurse that my arms can no longer be used to give blood, consulting with the head lab tech about the blood draw, waiting again in the waiting room I fear (a room that is, both figuratively and literally, the last stop before chemo), a quick nap on the exam table, and then the poking and prodding by a Fellow I’d never met before, intense prodding of each and every lymph node under my jacket, my shirt, my pants, an hour after our appointment was supposed to begin.

Disbelief.

and then, somehow, my sweetie got me dressed and we emerged, blinking, into the sunlight.

We will start radiation as soon as my seroma heals, follow it with oral chemo, and start again with a PET in June. We were prepared, both mentally and physically, with soft bedclothes bought and schedules altered, for triweekly infusions to begin, and so this will take some getting used to, to say the least.

It is a reprieve. A reprieve we could never have hoped for, in the face of what is still a recurrence, and we are grateful, almost jubilent at the good news.


The Path Report

April 14, 2010

When you have surgery to remove a cancerous mass, or several, afterwards you don’t really know much until about a week later, when the path report comes back.  It’s weird and strange and confusing, because the surgeon was just mucking around IN your body and all, but in fact it’s true.

After the surgery, the surgeon comes out to the waiting room and tells your family how the surgery went.  She tells them why it took longer than expected (in my case, she was stitching up the blood vessels and lymph vessels carefully, so carefully, to help avoid lymphedema, and the resident, who is in plastics, was tidying up, helping to avoid the dreaded “dog ear” left behind by mastectomies without reconstruction), what they saw or felt (in my case, lymph node after lymph node that was lumpy, bumpy, or otherwise suspicious for cancer, and which they pulled as if they were swollen grapes), and what tissue was taken (the whole pad of lymph nodes, and more nodes besides).  And then you wait.

First the family waits for the patient to wake up, and then the patient waits for the world to return to normal (oh! anesthesia!) and then they all go home and wait for the results.

Which brings us to today.  We headed to the cancer center yesterday morning to have the softball-sized lump of fluid dispersed.  Now, I realize this is way too much TMI for the bloggy world, but I swore I’d be honest and help lift the veil around cancer treatment, so get this — to drain the fluid, the surgeon sticks a GIANT NEEDLE directly into the still-healing scar and just pulls the fluid out.  No anesthesia, no numbing, no freakin’ ice involved — just a pump, essentially, because, in her words “this won’t hurt; it’s all numb in that area.”  Um, NO.  But it wasn’t painful, just a little stinging where it pulled on my stitch.  It was weird as anything, but OH, do I feel better!  (As per usual, I’m on the ugly side of the side effects, and I’ll have to go back for this at least once and maybe twice again this week.  Annoying, but really just from a schedule perspective.  I’m trying to work during preschool, not fill the time with hospital visits!)

Anywho.  As C helped me sit up (Have you ever tried to sit up without using your right arm/shoulder, which aggravates your lymphedema on the right side, or your left arm/shoulder, which could cause lympedema on the left side?  Without falling off the exam table?  Awkward!), the surgeon sat down.  (Why isn’t she leaving? I mean, I adore her and all, especially after the incredible patience she had stitching up all those vessels so nicely, but?)

The path report came back.

Oh.  I wasn’t prepared for this.

Sure, we were going to ask about it, as active participants in my care, but we didn’t expect it to be back and her to be prepared to discuss it until Thursday.  At least.  I’m still in my gown, gaping at the front awkwardly, and I’d really like to put my own clothes back on now, thankyouverymuch.  But we listen.

And here’s the deal.  It’s bad news and good news and weirdness and relief and fear, all wrapped up together.  I’m not sure I can convey it all here, but I’ve been thinking of nothing else since this moment and I need to tell you.  Also? It’s 4 a.m.  If I don’t deal with this now, I’m just going to anguish about it, and there’s no going back to sleep at this point, so here goes.

Thirteen positive nodes.

The pathologist studied the tissue that the surgeon removed, and the student or nurses put in carefully separated vials in the operating room, and he studied it under the microscope or whatever amazing instrumentation they use in that lab now.  The tissue contained 28 lymph nodes (that number isn’t important — it’s essentially all of the ones under my arm and a good number besides).  Thirteen were filled with cancer.  Adenocarcinoma, said the path report, which I learned means cancer in a glandular tissue like lymph nodes.

I don’t know if you remember this, but waybackwhen, my oncologist said that there would likely be no chemo, and there would only be radiation if there were at least four positive nodes, which she didn’t expect, although six showed up on the PET scan.  So we’ve been thinking that I start radiation in six weeks, after the scar heals and I lead a lunch-and-learn at a conference and co-lead the proposal writing workshop and turn in the first six chapters of my book and the kids finish school and summer begins and I can rest on the hammock if I need to, but really it’s no big deal.

Oops.

Thirteen positive nodes changes all that.

We haven’t yet met with my medical oncologist, but my surgeon has, and it looks like there may be chemo indeed in my future.  My near future.  Everything on the schedule is on hold.  The lunch-and-learn. The workshop.  The seminar at JPL.  Preschool.  BlogHer.  The kids’ school in the Fall.  It’s all up in the air now, as we see how much and how long the chemo will run, and how intense it will be.  We’ll have to have a port put in (and you simply must click that link; Frances is amazing and brave and beautiful) and then start treatment.  But, again, we don’t know any of that yet for sure.  We’ll meet with her next week.  For now, we wait.

There’s a twist.

Are you wondering what the good news might be?

As it turns out, the surgical oncologist and medical oncologist are rethinking not just treatment, but diagnosis.  There’s a theory, which I’ll explain tomorrow, that suggests that this might not actually be metastasis of the inflammatory breast cancer, but in fact a whole new instance of (much more typical and treatable) invasive breast cancer.

Which means that we totally did the right thing by having surgery, and that there is hope, much more hope than if this were a metastasis.  Which means I’ve survived the two-year mark in which inflammatory breast cancer is most likely to recur.  Which means …

Oh, this is good news indeed.

And although I’m sore under the arm and tire easily, I feel lighter without the cancer in my body this week.  I am more energetic than last week, and not as sluggish as I was when I had to drag that cancer around and meet its energy needs as well.

I am hopeful.

If you read nothing else, read this:  I am hopeful.