Decision Time

July 28, 2010

In just a few hours, I’ll be heading back to the oncologist for the results of my post-radiation PET scan, chest CT, abdomen and pelvis CT, bloodwork, and the report from my radiation oncologist.  We’ll finally find out whether the surgery and radiation killed the cancer cells in my body, or if they’re gearing up for another fight.

Whether BlogHer 10 will be all sweetness and celebration for me, or not.

Whether I can move on and go shopping with my friends this weekend, or not.

Whether I will get stronger and stronger as I have been the last several weeks as the radiation effects wear off, or not.

Whether I will get the chemo pill, or go to the hospital for the chemo infusions through a port in my chest every week or three.

Whether I will …

Oh, forget it.  You know what I’m saying here.  Big day.

I almost ended up going to cover President Obama’s speech at the National Urban League Conference tomorrow morning, squeezing it in just before my appointment, but I’ll simply be too nervous and too focused on getting there, so I passed at the last minute.  Justice Stacey,  TechSavvyMama, Minky, and Amanda will do a GREAT job in the blogger pool, and I’ll just tootle on down to the hospital for my appointment.  (You can watch the speech online here at 8 a.m. EDT, or check their blogs later tomorrow.  Very cool.)

I’m expecting very good news tomorrow (what else can I expect?), but until I hear the good news from my oncologist Herself, I admit I’ll still be a little nervous.

A little.

This week was a good one.  I spent a few days up at my mom and dad’s house with the kids, helping them have a good ol’ fashioned small town summer, complete with a trip to the fair.  We petted pigs, stood nottooclose to the cow wash, heard the goats complain about their pens, and watched the sheep look at us funny with those little tufts left on top of their heads.  And then, Iamnotmakingthisup, we watched a goat show.  The 4-H kids were showing the young goats they had raised, and the judge was calling out the results and the rationales at the end of each round like an auction caller. 

The children were fascinated.

And then, they climbed on the tractors.  All of them.  All sixteen hundred of them, as far as I could tell, as they test-drove-in-place machine after machine as if they were making a purchase, my little city boys.

We had a lovely time.

If I were Stimey, this post would be filled with pictures (and humor).

I’m not.  It’s not.  I’m just a little nervous about tomorrow.

Decision time.

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.

Good news!

April 12, 2010

So.  I don’t mean to tempt fate here, but the tremors in my left hand and arm that set off this whole set of testing are much, much better.  Maybe my PT was right, and a tumor was pressing on a nerve somewhere in there.  A tumor that was removed during last week’s surgery, and a nerve that is now healing and/or back to normal.  That would be fantastic, wouldn’t it?

Rock and roll!

In other news, today I finish making a few revisions on my latest paper for Space Policy and visit the last few booths of the Team WhyMommy Virtual Science Fair and then it’s off to the park with the kids.  As long as I rest between efforts, I’m feeling pretty much back to normal!  (You know, if normal has a wicked scar tightly circling her chest.  Bygones.)

Tomorrow I make appointments with some folks for second opinions on the next stage of treatment.  Today, I’m going to grab life by the horns — and don’t be surprised if you see me show up at book club!

Preparing for surgery

April 6, 2010

How do you prepare for surgery?

The hospital thinks they know.  When you call for your pre-op instructions, they tell you when to stop eating and drinking, whether to take your aromasin and neurontin, what soap to use for your morning shower, what time to be at the hospital, and what hospital entrance to use, and then they ask, “Do you have any questions, dear?”

Why yes, I do.

I have questions.  This week, I have had questions about everything, from, “Will this cure my cancer?” to “How will I know if or when the cancer comes back?” to “What do I tell my children?” and “Should I spend today getting my affairs in order, hugging my children obsessively until they protest, making the house ready for a convalescence, or is it okay to just proceed as if it were an ordinary day?”

Should I do laundry, or review my will?

It’s a minor surgery, they say, outpatient even, and will be no big deal.  I believe that.  It is a minor surgery.  It is no big deal.  Well, to them.  To me, it is probably the last day I can lift things with my left arm, since I have a high risk of developing lymphedema over there as well.  It’s the last time I can lift my children for a hug without feeling guilty, since they’re well over 10 pounds now, and that’s my limit without triggering my arm to swell from lymphedema.  It’s the last time we can remove a body part to remove the cancer, I think, since I kind of need the other ones, unless I get a recurrence in just one kidney.  The next time the cancer comes back, if it comes back, we’ll have to start chemo, and we won’t know when to stop.

Because remember, there is no research to tell cancer patients when maintenance chemo can be stopped.

There isn’t even conclusive research to tell me whether to have surgery tomorrow, to start chemo instead, or to simply continue on with the aromasin or another drug.  There are opinions based on experience — oh, there are plenty of those — and I’ve gotten opinion after opinion from oncologists, nurses, radiation oncologists, advocates, patients, and others who are just looking out for my welfare.  I appreciate it. I do. I feel SO much better today, going into surgery, than I did last week when I got the diagnosis.

I still have questions, but they are now questions that cannot be answered without additional medical research into the nature of this disease.

When I got the diagnosis, I skipped town.  My family and I threw some clothes into a suitcase and the kids in the car and we left for the family vacation that we’d planned for well over a year.  We spent the week in Florida, at the beach, at the pool, together with grandparents and cousins and in-laws, and we smiled and helped the children have a vacation to remember while we, my husband and I, checked our iPhone and our Blackberry and called doctors and nurses and advocates and hoped for encouraging news, conclusive recommendations, or at least appointments with the best of the best.

We were helped a lot by a lot of people.  Thank you. But in the end, it all came down to this:

  • There is no (known) cure for cancer.
  • Cancers are as individual as the individuals that carry them.

The research on IBC metastasis is so new, and so limited, that no one can say for sure, “Do this, not that,” and if they do? Well, they’re perhaps too confident, as there is not yet a consensus in the medical community or papers in the literature.

We need the research.

I will do my part.  Tomorrow, as the six tumors are removed from my body, they will be flash frozen in vials designed to keep them usable by scientists and medical researchers.  The doctors will use what they need for me, and then the rest will be sent to the IBC Biobank for future research or out for the Target Now Complete testing, one of the first to look at molecular markers that may indicate additional options for my treatment.  I’m trying to make the latter work out, but if not, I’ll send it to the Biobank in hopes that it will help someone else.

I’ve checked for inflammatory breast cancer trials, and signed up for Avon’s Army of Women to be notified when a researcher is looking for people to participate in studies of new treatments, complementary medicine, or information dissemination, online or in my area.  It’s important, this research, and the Army of Women is gathering 1 million women together who are willing to participate, locally in person or online, with and without cancer, so that the scientists can study what causes, and what cures, cancer.  If you can, please join the Army with me — and say yes to just one study this year if the opportunity arrives in your in-box.

We need the research.  And we need it now.