Perspective shift

January 20, 2011

This morning was pretty much awful. 

I held it together while I walked into the chemo ward, confident (enough), calm (enough), and ready for my blood draw — until I was seated in a very small room with three chemo chairs nearly side-by-side.  What’s a chemo chair?  Well, these are large overstuffed innocuous looking hospital chairs – unless you’ve been in one before, and then it’s also overstuffed with emotions, which typically aren’t that comfortable to sit on.  The man in the closest chair looked just awful – cap down low over his face, shoulders hunched, half-dozing as he waited for bloodwork to come back and the drip to be placed on the IV stand that sat arrogantly between him and the other patient.  I wondered what trial he was on, and hoped fervently that he actually wasn’t as bad off as he looked.  As I glanced at the woman in the other chair, I was somewhat reassured, as she was smiling and responding to email on her blackberry.  She looked like Sarah, actually, and I found a bit of a smile for her later.  “Sorry.  I’m a little nervous,” I explained.  “First day back.” 

First day back indeed.

The blood draw was delayed while they sent for smelling salts (I have this horribly embarrasing tendency to pass out if they wiggle the needle around in my vein, trying to get a better stick – after chemotherapy, one’s veins tend to be smaller and more stubborn.  Last Fall, one fainting episode ended with yells of “40! 40! Get the crash cart!” and big sticky pads placed on my chest for the defibrillator.  That’s when we found out I had vasovagal response, and that it was better to warn nurses and techs ahead of time, and to have smelling salts handy).  We waited, patiently and silently, in the small little room with the fuzzy tv mounted to the ceiling that showed us the weather, over and over.  The four day forecast, fourteen times at least.

After a while, they took my blood and sent it away for analysis.  If my labs came back “good,” then we would start the trial. 

We waited.  We made appointments, returned phone calls, and basically tried to wait together and not separately.  The man in the chair next to us woke up, mumbled incoherently, and when we looked over again, he was perfectly in control of himself — as he should have been, as it turns out that he was the other woman’s support person — her husband — and not there for treatment at all.  My impression of him as a cancer patient in later stages than me?  Totally off.  He’s fine.  He moved to a smaller chair as another woman walked in and took her place loudly, swearing about the 17 page consent form for this next stage of her trial, and we all waited patiently, trying to mind our own business.

After a time, we were taken to another room and told again to wait.

There was a lot of this, and I’m sure you don’t need it in excrutiating detail.  I asked questions, got answers, got a copy of my labs (everything’s fine), reviewed the list of potential side effects again, and finally got my meds.  I start the pills tomorrow.  There are two drugs.  One of them is an aromatase inhibitor (AI), which starves the cancer cells of the estrogen that they need to thrive.  The other is sorafenib (Nexovar), which “interferes with the ability of cancer cells to grow and divide.  The drug blocks two different pathways that would normally help cancer cells to multiply; one way is by limiting the blood supply and nutrients to the cancer cells and the second way is to stop the signal that allows cancer cells to grow in number.  Breast cancer cells are especially dependent on these two pathways to grow and we may be able to slow down or stop them with sorafenib….” (from the description of the clinical trial).  The clinical nurse had good things to say about the trial, since related drugs have been shown to work well together, even though sorafenib has not shown to be effective on its own (for locally advanced or metastatic breast cancer).  She was hopeful that this would slow down or stop my cancer growth.  She reminded me that the amount of medication given could be reduced or my participation stopped if there was too much of an effect — 20% growth in the cancer, or significant adverse impact on my quality of life.

Quality of life?

Did I miss the memo?

Apparently I did, as through my tears in the minivan afterwards I could hear my husband saying gently, “This is good news.  This trial is good hope that we can keep you alive and in good shape for longer.”  His words echoed in my ears, rolling around my brain and mixing with the words of the clinical nurse earlier.

Quality of life?

Keep me alive?

I thought we were still going for a cure.  Silly me.  I missed the memo.  I was still holding to the words of my oncologist in 2007, in 2008, and in early 2010, when she said to me earnestly, “We are doing this to get rid of the cancer.  I am hopeful for a cure.”  And yet, I totally missed the fact that she didn’t say that to me this time.  I’m locally metastatic — again — and this is totally serious.  The new meds may (hopefully WILL) slow my cancer growth or even stop it, but nowhere in the study materials or in their expectations will it actually get rid of the seven tumors in my lymph nodes in the soft tissue cradling my lungs.

The hope is that the meds will slow the cancer’s growth, and allow me to keep this quality of life.

This life, which requires frequent naps. Lymphedema sleeves. Lumpy body in all the wrong places.  And then some.  There is no “recovery” expected here, necessarily.  Things will not just be “fine.”  And I’ll have to come up with new words soon, words to reassure strangers who pry and wait for me to reassure them.  I can no longer say, “Well, I *had* cancer,” or follow up with “but I’m fine.” 

I’m not.  I *have* cancer.  I’m never going to be perfectly fine again.  There’s a (small?) possiblity I may be cancer-free again, and I HOPE AND PRAY I WILL BE, but I have to learn to be fine with what is now, and to swallow my fears, and to appreciate the life I have.

This life.  This day

There is no more “Just wait until treatment is over!” or “In the Spring, we’ll be able to ….” because this is it.  This is the quality of life that we’re trying to preserve. 

Last Sunday, I told my priest after mass that the cancer had come back, and that I would have to miss RCIA this week.  I told him that I was hoping and praying to be accepted into a clinical trial, and I reassured him that I was confident that it would help.  He asked me how long I would have to be on treatment, and I clarified that it wasn’t that kind of a treatment — that I would be on it, if it worked, for the rest of my life.  He reacted visibly, saying, “For the rest of your life?  Really?”

And I almost laughed inside, suddenly realizing why he was shocked.  For him, the rest of one’s life is a long, long time.  For me — well, let’s say I just wish it were.

Sorry about ending this in a sad place.  I’ll work on the change in perspective and be back to my normally grateful self tomorrow.  For now, shake it off – go read about our area’s ice storm at the always hilarious Stimeyland, or read about some inspiring women at Women in Planetary Science if you’re not clicking away already to the next blog in your reader.  Thanks for stopping by.


Starting a clinical trial … emotions

January 20, 2011

I’ve tried to write this post for several days now.  I know you’re never supposed to *admit* that in blogging, but well, there it is.   I just can’t decide how I feel about this.  I’m hopeful and worried and terrified all at once.  Is there a word for that?

Today’s the day.  Today we go down to the hospital, walk into the chemo ward, have blood drawn, and start the clinical trial.  I talked to the nurse working the study yesterday and confirmed that I was accepted into the clinical trial of Femara + Nexavar. 

I’m torn about what to do next.  Do you want to hear about what it’s like to be in a clinical trial?  Do you want to hear about the importance of research, and how wonderful and scary and hopeful it is to be a guinea pig all of a sudden, and how weird it is to be on the other side of the microscope?  I’ll write it if someone will read it, but I have to admit to you, I don’t have any idea what to expect.

Or sometimes how to even describe how I feel.  The emotions bubble up, one after the other, so fast that as soon as I grasp one, it escapes into the air and another one flits by to take its place.  Should I be this excited to be part of something so new and potentially life-saving?  Should I be terrified to start a drug combination that has never been tested for breast cancer before?  Can I even walk into the chemo ward calm and cool after all my days there, and all the emotion, and well, the *history* that you and I and it have together?  Or can I put all of that aside, meditate and write (this) and pray and walk in there calmly, with my head held high, ready to take what may come?

I’m always honest with you, my friends, and the truth is, I don’t know what to expect.  I don’t even know how I feel about it.  But I do know that I have to *act* confident, and *act* ready, and *act* calm, so that everyone agrees that I can start the trial, so that my husband will go off to work afterwards (it’s important today), and so that my children will go to school calmly, self-assured, and ready, not even knowing 

today’s the day.

My friend Jessica has done a wonderful thing – she had a rough interview with CNN last week and wasn’t happy with the results.  So she went online and told her side of the story — what she thought she was being interviewed about, and what she wanted other parents to hear.  In the process, she has shared some terrific lessons for others being interviewed, and I totally recommend you read it today while I’m at the hospital.  Oh, and comment.  To turn anger into goodness, she’s donating $1 per comment on that post to Crickett’s Answer for lymphedema sleeves.  I love that Jess, don’t you?