Hurry Up and Wait

A week of more tests, more appointments, more plans, more goals.  I think we're finally on the right track, the direction we're meant to go, and now we can rest for a few days.  This all happens so fast, and yet so slow...

I joined the clinical trial that had been offered to me.  The trial changes the chemotherapy from what I was originally told (4-6 rounds of 2 drugs) to 4 rounds of 2 drugs, followed by 12 rounds of one drug (I got that backwards in my previous post).  I will be randomized into a group that receives that one drug every week for 12 weeks (12 total treatments), or every-other week for 12 weeks (6 total treatments).  The best part of the clinical trial is Laurie, the coordinator.  She will be with me every step of the way, explaining the process, answering any questions I have, and getting me test results much faster than I would normally get them (for instance, she called me 15 hours after my chest x-ray, lab work and EKG to ensure me that everything looks beautiful).  She's like my Cancer Concierge.

Our oncologist assures me that, given the recent Oncotype score (remember, go big or go home!) the change in chemo is necessary.  They aren't changing the chemo so that I qualify for the trial (which was my original concern).  With a 28% chance of metastatic recurrence, they want to do everything they can do now to stop the cancer from coming back.  As a friend put it, if the cancer metastasizes "you can't put the genie back in the bottle" and the battle becomes bigger and more complicated.  Now is the time to attack it.

We got a copy of our Oncotype DX report, too, which was...well...interesting, confusing, and enlightening.  If I read it correctly, my treatment plan lowers my chance of metastatic recurrence to around 18%.  That might still seem huge - it's not 0, that's for sure - but it's far better than 28%.  And there are other things I can do to lower than rate, too, like exercise, diet, attitude, and faith in life and possibility.

We also learned that my original pathology report was incorrect; my cancer does not have progesterone receptors, which means I am "PR-" or PR negative.  So my diagnosis now officially looks like this:

IDC, 1cm, Stage Ia, Grade 2, 0/7 nodes, ER+/PR-, HER2-

We have this week "off" of cancer, kinda like a vacation.  It's interesting how if feels like cancer begins to define you.  This week, nothing exciting.  Next week, bone scan and echocardiogram on Monday; port placement on Thursday; chemo school on Friday.  Then a week off, and treatment begins.

I went wig shopping yesterday, which kinda made me think I don't know if I really want a wig.  I have some great skulls caps, and bought a few hats I can embellish with all sorts of shiny objects.  I have a few scarves I can use, too.  I didn't think I'd miss my hair, but now that I'm going to cut it, and likely lose it, my heart is a little sad.  It'll grow back, I know - but the loss becomes an outward manifestation of what's going on inside.

For right now, I can still pretend I don't have cancer.  But life has changed, and will continue to change, and I will make the best of it - hair or no hair.  :-) 

"For what it's worth: it's never too late or, in my case, too early to be whoever you want to be. There's no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you're proud of. If you find that you're not, I hope you have the strength to start all over again." - The Curious Case of Benjamin Button

Go Big or Go Home

Anyone who knows me patiently embraces the fact that I am an overachiever of the highest order.  I was devastated to graduate with a 3.998 (I got an A- in a one-credit practice class.  One credit.  Seriously, you couldn't have just nudged that up to an A?  No 4.0 for me).  I typically make hundreds of dozens of baked goods during the holidays to give as gifts.  I designed and hand-made the trusses for the garden shed in our backyard.  I walk through stores and say, “I can make that” with regularity and alarming frequency.

So it would stand to reason that I would inevitably Go Big or Go Home with regard to my breast cancer, too.

While we met with the hematology oncologist a week ago and explored my treatment plan, there was still some “wiggle room” for me to make a decision as to whether I really wanted to do chemo.  Not really, but I like to think I had some choice in the matter.  The doctor “strongly suggested” chemo, but continued to tell me it was my decision (affirmed by his use of graphs and charts labeled, “Team Decision Making”).

Last Thursday, however, the decision was made for me.  

We have been waiting for the results of that One Last Test – the Onctotype DX score.  This test examines 21 genes in the tumor and spits out what they call the “recurrence score,” which represents two distinct aspects of the tumor/cancer:  the chance of “distant recurrence” (or metastasis), as well as my benefit of chemo in treatment.  As I explained in an earlier post, a recurrence score of 18 or less suggests there is a low risk of recurrence, and the benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects.  A recurrence score between 18 and 31 suggests an “intermediate” risk of recurrence. It’s unclear whether the benefits of chemotherapy outweigh the risks of side effects.  And lastly, a recurrence score of greater than 31 means there is a high risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

My score is 42.  My chance of recurrence, without any additional treatment, is 28% in ten years. 

It is easy to confuse the two numbers – 42 and 28 – especially when the first score is called a “recurrence score”.  It makes it sound as if there is a 42% chance of recurrence.  That is not the case.  But when you're getting this information over the phone, from a doctor you've never met, who accidentally lets slip, "I've never seen a score that high before," it tends to make you feel pretty fatalistic.

Because of the Oncotype score, treatment options have changed.  The aggressive nature of the cancer means a more aggressive approach to chemo.  Whereas before I would be doing 4 to 6 rounds (or treatments) of two drugs, I will now be doing 4 rounds of one drug (once a week, every two weeks), followed by 12 rounds of two different drugs.  I have the opportunity to take part in a clinical trial that would alter the way medication is administered, but would not change the medication itself.  It's something to think about.

It was not an easy score to hear.  It means no opportunity for delivery of chemo through an IV; I'll be having a port put in this week.  It means a longer treatment period.  It means I will likely be sicker, crankier, and just generally more unpleasant to be around.  It means at some point I may have to rethink things like school or work - maybe.  It's the unknown that's the most difficult to deal with right now.

But it doesn't change the fact that I'm still Stage 1, which is very good.  I still don't have any lymph node involvement, which is fantastic.  This stupid score doesn't change what is, it simply changes what could be - and we're going to fight that future with every big gun we can get our hands on.  Time to lock and load, baby.

I think Ken's Chrismukah gift to me - to us - says it all:

An Unfinished Life

We met with the radiation oncologist yesterday, a truly wonderful doctor who was straightforward, honest, and quite funny.  She spent alot of time explaining radiation, short- and long-term side effects, how the radiation will happen, how they will protect my lungs and heart, and how long it will last (6 weeks, 5 times a week - yes, that's 30 treatments).  We've been doing a lot of research, and I don't think neither Ken nor I were surprised by anything she said.  She laughingly said that her patients often tell her that, after chemo, radiation is easy.  Somehow that didn't make me feel a whole lot better.

While waiting for the doctor, however, I started to feel overwhelmed again.  Every day, the reality of this situation becomes a little more clear.  When first diagnosed I was shocked, but determined I would get through this with grace (and a little style).  In the ensuing weeks, some of that confidence has changed.  I thought surgery would "fix" everything; then we were told I would need radiation in addition to my surgery.  Now I'm facing chemo - and being told that there are "recurrence rates" and "10 year predictions" and "potentiality".  Excuse me, but this is not what I had planned.  I have a life, you know.

I had a life before cancer, and I am determined to have a life after cancer.  I am not afraid of dying, but rather of living an unfinished life.  Let's forget the upstairs hallway where the wallpaper stops half-way.  Nevermind the number of sewing/quilting/beading/etc. projects I've always had good intentions of completing.  None of that really matters.  What I think about is my husband, my children, my grandchildren.  I still have school, and two jobs, and a fence to build this spring, and some 5ks to run. 

That's what I think about when I'm most afraid - the life in my Life.  I worry that I am not strong enough to endure all of this.  I am afraid of hurting, of being cranky, of being tired.  I am afraid of being selfish.  I am afraid of not being able to finish this - this treatment, this course.  This life. 

I have a wonderfully loving support system of family and friends; I know there will be days when they do much of the work for me.  But there is still so much of this I have to do on my own, and I pray every day I have the strength.  One minute at a time, one hour, one day.  Baby steps.  

I'm just plain scared of being unfinished. 

Decisions, decisions...

Having choices is a wonderful thing; making a decision is the hard part.

We met with the hematology oncologist on Friday.  Let me start off my saying that the new Gayle M. Jacob Cancer Center at Allegiance Hospital is beautiful (what little we've seen so far) and the staff are incredibly friendly and kind.  It made this whole experience far less frightening, intimidating and overwhelming.  When I randomly burst in tears while filling out paperwork, the receptionist gently asked if I was okay, and seemed genuinely concerned. 

We met with our assigned doctor who, for a couple of reasons will not be our long-term oncologist.  He was pleasant and accommodating, asked several questions, did a quick exam of my surgical sites, and then got down to business.

He recommends (note that word; it becomes important later on) chemotherapy.  As he points out often, the choice is mine (another important word to note).  When pressed, he tells us there are many reasons why he makes this suggestion:

1.  The size of the tumor (great than 1 cm, in my case 1.3 cm.  It doesn't sound like a lot, only about half an inch, but it's a factor when deciding treatment.  I never realized the true size of my little lump until I physically looked at a ruler).

2.  The rate of growth.  I found my little lump for the first time at the end of August, when it was barely detectable.  By the time it was removed Nov. 17 it had grown significantly.

3.  My age.  This is the only time in my life when 48 will be considered "young."

4.  The location.  My lump was found at "10:30" on my breast.  It was also deep in the chest at the muscle wall.  Both of these factors are significant in the potential for recurrence.

5.  The receptors.  My lump is ER+, making it a good candidate for hormone therapy.

6.  The grade.  My lump was graded on a number of factors, including differentiation (how pretty it is) and the rate of mitosis (how quickly the cells are dividing).  On a scale of 1 to 3, mine is a 2. 

He gives me statistics on recurrence rates, and tries to explain them.  By now my head is spinning and I really just want to throw up.  Initially we thought chemo wouldn't be required, but after our meeting with the surgeon earlier in the week we were somewhat "put on notice" that it was a possibility.  But really, I wasn't prepared.  I thought I was.  Really.  But then I'm looking at bar charts and graphs that are supposed to be representative of my chances of recurrence, given my age, tumor size and histological grade, and I finally find my fear.

So I look at these numbers and realize that they're "statistically significant" (thanks to that wonderful stats class I took last year), but are they significant enough for me?  

Since the moment our surgeon told us he was "concerned" we have been researching breast cancer.  We have traveled to Breastlandia and learned the new language.  By the time we meet a doctor we are able to have a true, interactive conversation with them about my diagnosis, prognosis, treatment, options, side effects, outcomes, and potential for recurrence - and we understand these conversations.

So I ask the doctor, "What do you suggest?"  And he tells me, "Well, the choice is really yours."

I'm used to doctors saying, "Oh my, you have an ear infection, take this antibiotic and you'll be better."  No one ever gives you a choice about that, you just do what you're told.  Have a hernia?  Need an operation.  Break your arm?  Let's put it in a cast.  

But now we're talking my life, the chance of recurring cancer, and he wants to give me a choice?  I'm supposed to make the decision?  Seems like a no-brainer, right?  

He tells us about the treatment they'll use and the length of time it'll take. He introduces us to a very nice woman who "schedules" me (finally - I have my own personal planner!!) for a "welcome" session next week, at which time I'll get a tour of the new cancer center, meet the staff, and learn more about the process.  My first chemo appointment is scheduled for January 6.

I've told several people that I "start" chemo on January 6, but in some ways I'm still working on making my choice.  And that's the other piece of this whole "choice" crap - it really has to be my choice.  I don't take this choice lightly; it's the most important choice I'll ever make in my life, and there is so much to consider.  The Oncotype test was sent out on December 14 and the results will be back before treatment is scheduled to start.  I say that could be a part of the final decision, depending on the score, but really, unless it's a 0, does it matter? 

Some days, I look for a way out.  I don't care about my hair, I don't care about throwing up, I don't even care about being too tired to care.  Surgery was, well, surgery - I've had surgery before and it "fixes" things, so my brain isn't completely comprehending the enormity of what this surgery did not fix.  Treatment will be an in-my-face constant reminder that my body has betrayed me.  

In the end, I know what the decision will be.  But I'm just not quite there yet. 

Fractured Fairy Tales

Once upon a time there was a little girl, who fell and broke her arm.  Her mom and dad took her to the hospital, and the doctor put her arm in a sling instead of a cast.  She cried and cried, saying, "What if no one believes I broke my arm because it's not in a cast?"  Her sister replied, "Don't worry - I'll take care of them."


If you met me on the street today (or saw me around the office, or caught me typing a final in the computer lab), you would never know I have cancer.  There is some advantage in this:  I don't have to talk about it, I don't have to explain, I don't have to kindly listen while people apologize for this "horrible, terrible" thing that has happened.  I appreciate their kind words and intentions, but sometimes, it's nice to pretend everything's "normal."

On the other hand, if you met me on the street today, you would never know I have cancer.  I have my breast.  I still have my hair.  Body willing, I will be back to yoga and running (or walking...or crawling) next week.  Sometimes, other people forget; when I say or do something that reminds them, some seem almost hesitant to believe I still have cancer.  Yes, I had surgery, and my margins are clean.  Yes, they removed my lymph nodes and they are clear.  But that doesn't mean the cancer is necessarily gone.  And it doesn't mean there isn't a likelihood of recurrence.  And that doesn't mean I feel any better physically or emotionally.

We met with the surgeon on Tuesday, and he confirmed that everything looks really good.  I learned two new things that I had not known before:  first, they removed 7, not 4, lymph nodes.  But all are clear.  And second, in addition to invasive ductal carcinoma (IDC), I also have ductal carcinoma in situ (DCIS).  Often, IDC springs from DCIS that invades surrounding tissue.  DCIS is easier to treat than IDC.  And when both cancers are involved, the focus becomes IDC.  These pieces of info were important to us because we realized that this is bigger than we initially thought - but we're still in a good place, and it's still going to be okay.

On Friday, we meet with the medical, or hematology oncologist.  This is the doctor who will determine the chemo treatment.  Am I having chemo?  I'll know for certain on Friday, but we've been told it will most likely happen.  We may have a choice in this; we will certainly have input in the decision.  We may have to weigh risks and benefits.  We won't know more until Friday, but I've always been a "prepare for the worst, hope for the best" kinda girl.  

In some ways I would welcome chemo.  I need to feel aggressive, or even "vicious" as Dan said to Ken.  I don't want to go through this again; I want it to be done.  I want to go on with my life.

I may not look broken, but there are parts of me that are mending. and like a sling that cradles, instead of a hard cast that limits movement, I have lots of loving people around me who will "take care of them" and support my recovery.  Thank you all for being part of my journey.

The things I say

Words are flying out my mouth without regard for consequences, without forethought or even care.  I find myself saying things I have never said before, will never say again, and cannot fathom why I am saying them now.

My mother would say, "Ya ain't got no couth."  That's me - totally couthless.

My husband bears the brunt of my tirades.  I question his parking ability.  I accuse him of being unfeeling and uncaring in expressing his feelings.  I roll my eyes and sigh loudly and then feign innocence - "No, I'm not mad at you, I was just breathing, whatever..."

At Meijers yesterday, I had what I can only classify as a minor breakdown.  It started with the three parking spaces we completely drove by without parking, then finding a spot that was miles away from the store (no, it wasn't.  In fact it was closer than any of the original spaces.  Nothing irrational about me right now).  And it was cold.  And my god the throngs of people were just awful - like vultures circling a deer carcass on I-94, for heaven's sakes!  And the Christmas tree I wanted was all sold out; and no lights I liked; and really, those are the only ornaments you have?!  So what if it's only 12 days until Christmas, you should have what I need!  Get out of my way you people!!

My head was...where?  I actually circled two aisles, trying to find...what?  I can't remember.  It's like my head was detached, my brain was on vacation in sunny Aruba, and my body was left behind to be present for the sake of politeness.  WTF.  I couldn't wait to get out of the store, hopefully intact and relatively sane.

Those around me are starting to doubt my sanity; I, however, have doubted it for years.  But this is new, and disturbing, and scary.  I am ANGRY, but I'm not.  Really, I'm not.  I honestly mean it when I smile and say I'm feeling good and positive; I'm genuine when I say I'm going to get through this and it'll all be okay.  I'm sincere when I say this will not kill me.  I know everything will be good, that I am lucky, that I am blessed to be where I am right now.

And yet that anger is still there.  Yes, I know it's normal and natural and part of the grieving process.  I'm just not sure what I'm supposed to be "grieving".

Mostly, I think I'm feeling way out of control.  I have no illusion of control; it's part of what my belief system is based upon.  I cannot control that I have cancer, I can only deal with it.  I cannot control the outcome, I can only do my best to treat this as aggressively as possible. I know this, instinctively and honestly and to the core of my being.

But dammit, I'm still angry and saying things I shouldn't, and feeling unhinged and clueless and raw and even out of control.  So I apologize in advance if I become uncouth in your presence.  

Stupid cancer.

Third down and inches - or miles - to go

We heard from the surgeon yesterday and got the best news we've heard in weeks:  No cancer in the lymph nodes.  And all margins on the tissue removed is clear.

The cancer appears to be gone, out of my body, out of my life.  Away with you!

So right now, my diagnosis looks like this:

IDC, 1cm, Stage Ia, Grade 2, 0/4 nodes, ER+/PR+, HER2-

This was the third of four potential hurdles we needed to jump to determine the need for chemo.  

The first was true size of the tumor.  Had it been bigger than 2 cm, chemo would have been strongly indicated.

The second was HER2 status.  Had it been positive, chemo would have been required.

The third was node status.  Being node-negative means chemo is not currently a necessity.

The fourth test will be the Oncotype test, an assay of the breast cancer.  My current understanding is that the oncologist will send part of my tumor off to CA, and in a week or two we will have the results of that test, a "recurrence score" which will be a number between 0 and 100.  There are three categories of numbers (thank you, breastcancer.org)

• Recurrence score lower than 18: This suggests you have a low risk of recurrence. The benefit of chemotherapy is likely to be small and will not outweigh the risks of side effects.
• Recurrence score between 18 and 31: This score suggests you have an “intermediate” risk of recurrence. It’s unclear whether the benefits of chemotherapy outweigh the risks of side effects.
• Recurrence score greater than 31: You have a high risk of recurrence, and the benefits of chemotherapy are likely to be greater than the risks of side effects.

That number will help us and our doctor decide if chemo is the right course of action to beat this beast.

So - we're still waiting.  It feels like it's been forever, and yet I realize it's only been a few weeks since I first found the lump.  Sometimes time simply flies by; other times I feel as thought it's crawling.

But for today I am happy and celebrating; we have positive test results and I'm feeling optimistic that I will get out of this without chemo.  

I still think I'd look good bald, though.

Know your girls

Many of my friends and family members have routine, yearly exams.  As women we need someone to rummage around in our vagina at least once a year to check for all sorts of things we cannot see.  We put on paper gowns and turn our heads because it's all so tiresome and sometimes unpleasant.  It's something we often let be done to us, instead of actively being involved in the process.  Our own bodies are a mystery, and we rely on health care professionals to tell us what we need to do for ourselves.

As we get older our doctors or caregivers ask us to consider mammograms.  This, of course, is on top of the monthly routine manual breast exams that we're already doing ourselves, right?  Right?  Because I'll be the first person to admit that I have never done an honest, true breast exam on myself.  I've always laughed that that's my partner's responsibility - that if anything were wrong, he'd find it.  But he didn't find my little lump.  And my caregiver didn't find my little lump.  I found it, accidentally, all by myself, but not during a manual exam.

So those routine mammograms we're supposed to have - you know, the ones the insurance industry has deemed aren't really as valuable as once believed - here's a secret about them:  They don't catch everything.  In my case, my little lump was outside of the area generally mammogramed - but still in breast tissue.  So that little squeezy machine cannot guarantee it'll get an image of your entire breast.  On top of that, the mammogram sometimes doesn't pick up everything that's in your breast.  Or the radiographer may interpret the results differently.  So while they're an incredibly valuable and important tool, they are not without their drawbacks.

And then there's the cost.

When I went to my original mammography appointment, I was told the mamm would be free (to me) because it was a routine screening.  As we age, we go from having them once a decade for a "baseline," to once every five years, to once a year, because as we age our chance of getting breast cancer rises considerably.  Routine screening and early detection are still considered valuable tools in the fight against breast cancer. 

But the minute I told the technician I had found a lump, I was turned away from the "routine mammogram screening" location, and sent to the hospital for a "diagnostic mammogram screening."

And in that instant, the cost of my mammogram went from free to over $1,000.  Out of my pocket.

When I got the bill I called my insurance company and was politely told that they pay for routine mammograms - it's part of health wellness and preventive medicine, and they are proud to pay for them, blah, blah, blah.  But once I found the lump it became a diagnostic test, and diagnostics are subject to copays and deductibles and out-of-pocket expenses, and that's just the policy of the insurance company and they are glad I found my cancer early but sorry, they're not going to pay my bill...  (Do you not realize how much money I've just saved you by not waiting until next year, when my cancer would be more advanced and I would require far more treatment?  Or are you just hoping I'd be so far gone that, well, frankly, you wouldn't need to pay for treatment?)

I'll gladly pay the bill, but will continue to complain not just about the unfairness of the situation, but the larger implications.  I am blessed to have really good health care insurance, but what about women who do not?  Do we encourage them to keep their mouths shut if they find something, hoping it will then be "discovered" during a routine screening so they won't have to pay for it?  Or worse, if something is found during a routine screening, will they then be required to pay for that screening later because it changes to something diagnostic?  What kind of message are we sending to women - stop feeling your breasts and hope that your cancer will be detected during your yearly rummage-session?

So ladies - get to know your breasts.  Intimately.  If you have a partner, help them get to know your breasts, too.  Really, ultimately, we are responsible for our own health.  Our insurance companies aren't going to be helpful, and even our healthcare providers will miss things or make mistakes.   If you ever think you've found something, seek medical advice and attention.  Better to check it out than wait too long, or to wait at all.  Early detection is key to survival. 

Love your girls, because we are our own breast friends. 

This is your brain on drugs...

I am apologizing in advance for any narcotic-fueled ramblings you are about to read.

Let me start by saying 

Yea!

Yesterday is history.  

Another thing - General Hospital is really more fun when you're taking codeine.  But I digress...

We arrive at the hospital at the designated time, and after getting writer's cramp from signing so many documents, we arrive on the Third Floor:  Day Surgery.  We meet our nurse, who's name is also Nancy.  She excitedly tells me that there is another Nurse Nancy on the floor, as well as a Tech Nancy, and so that's obviously a good omen for me.  I'm so freaking scared that I simply nod and smile and decide she's a little crazy, but maybe that's okay.

Next, I get to disrobe and put on one of those adorable little hospital gowns.  Really, after all the advances in medicine and technology and patient care, no one has figured out a better design for a gown?  I'm seriously thinking that Project Runway needs to make this a challenge next season. 

I meet Deann, my other nurse.  She asks my name and birthdate, which I recite (but not before almost forgetting - seriously).  She puts more paperwork in front me and states outloud the procedures I'm to have done:  Lumpectomy and Sentinel Lymph Node Biopsy on Left Breast.  She asks if this is correct - and I start to cry.  She gently rubs my back and tells me to take my time.  I am overwhelmed by her kindness that I cry a little harder.  Finally, I take a deep breath and sign the paperwork so that we can get this party started.

Nancy pops back in with a big smile on her face - and that dreaded little red tray full of IV needles.  I cry again.  I tell her I have trouble with IVs and she's probably going to have to dig.  Ever so sweetly she says, "I've never had to dig.  But I can numb you up ahead of time if you want.  But it really will be okay."  So I take a deep breath, put on my big girl panties and tell her to go ahead without it.  I'll be damned if not only did she get it on the first try, but I didn't feel a thing:

Thank goodness I have Ken to keep me company, because it's about this time that things start to get busy, and I start to get scared:

 

Deann tells me it's time to go down to Nuclear Medicine for my tracer injection.  The tracer is a radioactive dye that will be used to trace my lymph nodes for biopsy (they start with the first, or "sentinel" lymph node.  Does anyone else think of "The Matrix" when they hear that?  No?  Okay, must just be me...)

At my side is a Ferris State nursing student, in her fourth year.  She's young enough to be my daughter, and she is obviously very nervous.  She talksveryfast and I have to ask her to repeat herself a couple of times.  I learn later that this is the first time she will see a tracer injection.  Poor thing.

My surgeon has asked that the nuclear medicine guy (NMG) not use lidocaine in the tracer injection because he feels it inhibits uptake of the tracer by the lymph nodes.  When I tell the NMG of my surgeon's request he says, "Dr. Frantzis?"  Apparently, he must make this request frequently.  I ask the NMG if I will still like my surgeon after the procedure is done;  he is silent for about five seconds, then says, "I really can't answer that question."  Wow.  What the hell did I just get myself into?

(If you're squeemish you might want to skip the next couple of paragraphs.  I know I would.)

The NMG tells me it's like having a TB test.  They use the "smallest needle in the hospital" and he shows me what looks like an insulin syringe with one of those little teeny tiny baby needles on it.  I'm thinking, okay, not so bad.  He sticks the needle into my left breast directly above the areola.  Okay, not so bad, kinda pokey, but really, lidocaine for this?  He then says he's going to inject the tracer dye.

I levitate off the table at least six inches.

This is not a pleasant procedure.  No, really, it is not.  The tracer dye burns, badly, as it's being injected.  I cry, and apologize, and cry some more.  Then I apologize again.  The poor nursing student standing at my side is absolutely speechless; I'm convinced I see her instinctively hunch ever so slightly, as if protecting her own breast.  Finally, the NMG is done, and he can't get out of there fast enough.

The nursing student and Lynette (where did she come from?) must watch the dye that is burning in my breast for five minutes. so I lay directly underneath a large plate while Lynette explains to my poor nursing student everything that has just happened, and why they are now watching this shit coursing through my boob.  Then, we're done!  All smiles and happiness, they wheel me back up to the holding area on the Third Floor.

I meet the nurse anesthetist, as well as the anesthesiologist.  Deann gives me something to calm me down (could I not have had that, like, half an hour ago??).  They ask me to sign my breast.  The surgeon stops by and signs my boob, too (I feel like a freaking rock star right about now).

 

Patricia is my surgical nurse; she gives me more drugs so I really like her, too:

And we're off like a cheap prom dress - it's showtime!

I wake up several hours later.  The first thing I do it touch my chest - my breast is still there.  I touch under my left arm - no drain, so they did not remove all of my lymph nodes.  I touch my collar bone - no port, which means none of the lymph nodes appeared suspicious.  I start to cry, and then Ken and Michael and Stephanie are at my side, and I know it's going to be okay.

I don't remember much of last night.  They gave me morphine before I left the hospital, which makes me nauseous for several hours every time I try to eat or drink.  This pisses me off because I have homemade soup and peppermint bark from Kirsta that are calling my name, but not wanting to stay in my tummy.  Stephanie hangs around for a while and it makes me so happy I cry (I see a definite pattern developing here).  I spend the evening and all night in a pattern of sleep/wake/sleep/wake until my throbbing neck demands I get my ass out of bed.  I'm taking codeine for the first time in my life and it's not too bad - far less woo-woo than Vicodin which, since my wrist surgery is my go-to pain med.  

But this morning, my soul is singing.  Every step we make takes us in a positive direction.  Small tumor.  Clean margins.  Negative HER2.  Negative nodes (so far).  Two of four chemo indicators are negative, which makes me optimistic.  Once we get the final path report this week we'll know more; if negative, then we move on to the Oncotype test.  I know there will be radiation - I can do that.  I prefer no chemo, but will do whatever I have to to beat this beast.  But I'm beginning to think we're in a good place; that surgery and radiation will do the trick. 

I know this will never be "over"; our lives are forever changed, and I will always be watching and waiting for a recurrence.  But I also realize that I am fortunate, I am lucky, to have cancer that is small and "typical" and easy to treat.  

I am blessed.

Lock and Load, Baby

Those are the words my best friend said to me yesterday.  "I'm cleaning the barrels, oiling them and wiping them down, getting them ready for a fight," he said.  "So when it's time, it'll be lock and load, baby - no messing around, we're going to be vicious with this thing."

That best friend would be the man who is also known as my partner, a crazy-haired grandpa, and my husband. 

In some ways, I have the easy part in all of this.  Yeah, I have the cancer - but he has me.  He waits with me, holding my hand; he paces the halls of doctor's offices and surgery centers and hospitals.  He will give up his blessed morning coffee when I'm unable to take anything by mouth before a procedure.  He makes multiple pharmacy runs while I nap.  He lays in supplies of diet Vernors and Ben & Jerry's and my favorite little licorice bars.  He goes out of his way to comfort me, to care for me, to ensure my safety.  He is my protector, my guardian, my in-home health-care aid.  In all of this, he has to stand by and watch and wait, often feeling helpless.  Repeatedly, he has told me he would "do this" for me, if he could - and I know that to be true.  He would take on the cancer and all the associated procedures, surgeries, and possible outcomes, along with the associated health risks, so that I would not have to. 

Sometimes, words fail me when it comes to Ken.  He is my sun, my moon; my life is perfectly complete with him as my partner and best friend.  I cannot imagine being here, in this place, without him by my side.

So, from the girl who despises guns more than liver and onions - it's time to lock and load, baby!  Thank you for pulling out the big guns for me!

The Allegory of the Cave

So while in undergrad I learned about Plato's "Allegory of the Cave."  In a nutshell, prisoners are chained, immobilized, in a cave.  Their only view is the back wall of the cave.  They cannot move their arms, legs or head.  Behind them is a large fire that casts shadows onto the back wall of the cave, of passing people, animals and things.  The prisoners can hear sounds, but do not know what these sounds mean, or where they are coming from.

The story goes that the prisoners are really us as unenlightened beings (it's philosophy, after all).  We interpret what we see - the shadows - as reality, not as reflections of "real" things.  The sounds we hear are our interpretation of the "real" sound.  We are held captive in this cave of our own reality, experiencing life based on our limited knowledge of what is real, and what is "real".

Yeah, I didn't do so well in that philosophy class - but some of the concepts stuck with me.

So lately, I feel like the prisoner in the cave.  I see these objects in front of me and they have become my reality.  Unlike the prisoner, though, I realize that the fire behind me - the cancer in my left breast - is casting shadows in my view, so that right now I know I do not see the true reality of my situation.  I only believe what is in front of my eyes, but I have a suspicion there is something else I cannot see that will alter my current reality.

I hear sounds - words from my doctor - but I don't know what they are, what they mean, or even if they're really true.  We met with the doctor two days ago and I have forgotten the actual words he used.  I find that what's left is my interpretation of what he said.  And is what he said "true" - or does he not want me to worry?  Does he know more than he's telling me?  

So my reality is, well, just my reality.

The end of the allegory goes like this: 

One prisoner is freed from his chains.  Instead of running out of the cave he must literally be dragged up and out, fighting the whole way.  He sees the people and animal representations that have been casting shadows on the wall of the cave, but does not believe them to be “real” – he still believes the shadowy representations are real, because that’s been his experience his whole life.  Once out of the cave and in the presence of the sun he realizes what he has seen.  As he is illuminated by the sun he realizes that what cannot be seen cannot exist; the sun illuminates and brings to life the visual world, and so without the sun to bring light, one cannot “see” the real world.  

Tomorrow, I move towards having my chains surgically removed, but the thought of moving up and out of the cave into true reality is starting to scare me a little. It's possible I'll wake up with questions still unanswered, and tests still to be performed.  There is safety in being right where I am at this moment, because I don't know what I don't know.  

But I know I cannot live in denial forever, and tomorrow is a good first step towards crafting a reality that is based on knowledge, not internet research and (frankly) happy fantasy.  I've always believed that knowledge is power - if I know what's going on, I can start to shape and form my "reality".  Of course, if you're Plato, there are degrees of knowledge...and I'm just not up to a discussion of the Divided Line...

Welcome to Breastlandia!

No visa or passport necessary, but you will be required to learn a new language!

I’ve worked for the state so I come from The Land of Misfit Acronyms; I’m used to four-letter words that stand for 32 other letters.  I can speak a complete sentence of completely made-up fauxords (that’s “faux” and “words” combined – sounded better in my head).  So ever the consummate student, I am learning new words that, strung together, start to describe this new land I’ve entered.  

We met with the surgeon today.  I have a choice between a mastectomy (MX) and a lumpectomy.  He explained there is no real advantage to a mastectomy so I opted for the lumpectomy.  So bonus points for being able to keep the better portion of what little I have!

My hormone test results are very good:  My estrogen receptors (ER) are positive (+) and my progesterone receptors (PR) are also positive (+).  About 75% of all breast cancers are “ER positive.” They grow in response to estrogen. About 65% of these are also “PR positive.” They grow in response to progesterone.  This means that hormone therapy may be an additional treatment I use.

The third test is called HER2, or HER2neu.  It stands for Human Epidermal growth factor Receptor 2.  I don't know what it does or what it means, really - except that my original test came back "equivocal" - not negative or positive.  So, a Fluorescence In Situ Hybridization (FISH) test was conducted, and my HER2 is determined to be negative.  This, too, is a good thing.  A positive HER2 means that the cancer is typically more aggressive and faster growing.  So now my diagnosis looks like this:

IDC, Stage 1, Grade 2, ER+/PR+, HER2 -

These results of these hormone tests are good.  I am still part of the "typical" breast cancer brigade, and it's a good place to be.

Because the cancer has invaded surrounding tissue, I will be having radiation (RADs).  The surgeon also explained the sentinal lymph node biopsy (SNB) would be a determining factor in whether I would need chemo, as would the results of the Oncotype.  The Oncotype test is done in California and takes two weeks for results to be returned.  You can learn more about it here:

http://www.oncotypedx.com/

The SNB is an interesting procedure.  They will inject the site near my tumor with a radioactive material that will travel around until it hits the first - or sentinal - lymph node.  Using a gieger-counter-like wand, they find and remove that lymph node and check it for cancer cells.  If there are cells present, then they may remove one, more, or all of the lymph nodes under my arm.

http://www.cancer.gov/cancertopics/factsheet/detection/sentinel-node-biopsy

Then, I get to rest, hopefully at home.  I'll be referred to an oncologist after Monday, and we'll start mapping out a treatment plan.

So yes, I'm feeling positive about the course of this journey, even if I'm still not certain of the language.  Monday can't come soon enough - I just kinda want to be done with this "phase" of the process, and feel like I am moving towards healing.  The waiting is truly the hardest part.

Happy Sunday!

We try to keep Sundays as a sort of secular sabbath:  a day of rest and reflection, a time for relaxation and reconnection.  I love Sunday mornings especially, with our coffee on the sofa in the early morning light.  It feels like the we are waiting to greet the day.  And if we're lucky, we can find reruns of "90210" on SoapNet - an old early-dating-days favorite.  It's a chance to regroup and reset, and get ready for the next six days.

If the weather is nice we run outside; when it gets colder, like it is now, I prefer to run at the Y on the oval track.  I like it.  There's a peace in the pace, in the routine of the run around in a circle.  I count my laps and find that my mind focuses on the numbers, instead of the pain in my arch or the inability to catch my breath.  I miss the sun and blue sky, but I get more work done on the oval track.

The first time I ever ran, I was 46.  Before that fateful day, the farthest I had ever run was the 50 yard dash - when I was 10.  So I'm getting older and feeling the need for more activity, and running seemed natural and relatively inexpensive.  The first time out called for me to walk for 5 minutes, then run for 1, then walk for 3.  I walked for 5, feeling strong and confident and determined!  Adrenaline pumping, I take my first step of my very first ever run.  My lungs start to explode, my legs shake; I want to vomit, and then just fall over and die.  I look at my watch, and I still have 30 seconds left to go.  I cursed every runner I've ever known (including my husband) and vowed that if I survived the next 30 seconds, I would never run again.

I ran three 5ks that summer/fall - then I stopped running.  Winter came, and I just didn't want to go outside.  I was consumed with writing a thesis and getting ready for graduation.  I was never good at it anyway, and I was not losing the weight I hoped to.  I had hated running from the first step I took, and it was easy to give up.

I started running again this spring, when the weather turned warm.  I paced myself training this time - didn't overdo it so I hated it, was gentle and patient with myself, had a more positive outlook and realistic expectation.  Even Ken noticed the difference; I wasn't an angry runner, this time I was a happy runner.  I think I even fell in love - just a little! - with the freedom of the movement.   I ran a 5k in October, but wasn't happy with my time.  I had plenty of reasons for my shitty time - I'm too fat, I'm too slow, I don't care enough, I'm too old, I don't have enough determination, I really just can't do it, why don't I just give up?  As I sat on the sidelines watching runners cross the half-marathon finish line, complaining and whining in my head, I saw every one of my "excuses" at that moment - a woman in her 70's, another woman twice my size, someone crying, another person moving barely faster than a slow walk.  I realized that I am my own worst enemy - I am the reason I cannot run.

I know I will survive this fight, and I will do it in style.  And all the while I will be training for a half marathon - because if I can do that, I can do anything.

Today's blog brought to you by the letter "C"

Sometimes, I forget.

Like today, I was cleaning the bathroom and scrubbing the sink.  I remembered something to add to the grocery list and ran downstairs, and there's my husband so I tell him I love him and kiss his cheek, and I run back upstairs and finishing scrubbing, then decide to wash the bathroom rugs and throw them down the laundry chute, and I'm standing there and I know I've forgotten something but I can't remember what it is...

I forgot about it.  For a moment, it was gone.

Right now it's easy to forget.  My left breast is tender, not just from the excisional biopsy, but over the top and down towards my armpit.  Once in a while I feel a really sharp, stabbing pain near the top.  I suppose that could mean something.  Most likely what it means is that my breast was cut open and my little lump was removed and there is healing happening.  That makes sense.

But when my breast doesn't hurt, I sometimes forget.  I know as I move further into treatment it will be harder to forget, because it will become so much a part of my everyday life.  But it - this cancer - won't define me.  It is not me.  It is simply a part of me, for right now - but I'll be damned if it's going to hang around for very long.

Two nights ago, I had a dream.  My friend Kirsta and I were visiting friends, many of our favorite child welfare buddies (Cheryl and Jean and Veda and Jeanne were there!)  They all wore these beautiful royal and light blue flowing robes - almost choir-like - and were warm and welcoming and loving (as always!)  I had to go outside and let the dog out of the trunk of my car (don't ask me why I had a dog in the trunk of my car).  As I opened the lid the dog - a medium-sized brown mutt with a jet-black muzzle - leapt at me and bit my left forearm.  I'm looking down at this dog and I see his razor-like teeth, which sink deeper into my arm.  It hurts - I swear I can feel it in my dream!  His eyes are so dark and he smiles as he bites me even harder.  I'm flailing and screaming and this dog just keeps sinking his teeth even further into my arm, and I keep looking him in the eyes and he just isn't going to let go.  Suddenly another dog appears - huge and soft and round and friendly and sweet, and he grabs the dog on my arm and shakes him and magically, the smaller dog lets go of my arm!  The big dog literally trots off like a puppy with this howling, wrenching cur in his teeth, and I'm left looking at my mangled, bloody arm.  I hurt, I am in pain, I am scarred for life, but I am alive.  And I hear my friends behind me, singing like a host of heavenly angels, and I realize that nothing else matters but the fact that I'm standing in that very spot, having survived a possibly deadly attack.  I woke feeling so happy and peaceful and beautiful and loved.

I do not need a copy of Freud's Interpretation of Dreams to figure that one out.

So sometimes I will forget, and I'm happy when I do.  But it's okay when I remember, too, and it doesn't make me sad.  It just makes it real - for now.  Because one day, that fucking dog, determined to bite my arm off, is going to be carried away by the treatments that will save my life.  I may be bruised and bloody and scarred when it's over, but I'll be alive.

And in the end, that's all that really matters.

A new path in my journey

I have breast cancer.

Once upon a time, I found a lump on my chest.  I didn't think much of it; it was small and innocent, and laying quietly on the outer edge of my left breast near my breastbone.  I rubbed it and thought, "Hmm...I don't remember that being there before.  Wonder where it came from?"  I went about my business and, quite honestly, I forgot about it.

In mid-September I went in for my annual check-up.  My practitioner is a nurse-midwife who spends lots of time talking with me (pre-physical, while I still have my clothes on).  We talked about hot flashes and natural remedies.  I forgot to mention my little lump, and when she did my breast exam she didn't feel it, either.  But she scheduled a routine mammogram, and I went on my merry way feeling examined and happy.

I mentioned my little lump when I arrived for my routine mammogram.  I pointed to the spot and the nurse felt it, saying, "I never would have noticed that if you hadn't mentioned it."  She then told me I would have to go to the hospital radiography department for a mammogram and ultrasound.  Oh joy!  Another two-week wait.

Two weeks later I had the mammogram - only to discover that my little lump was too far outside of the region that they could mamm.   Trying to fit my little lump, near the middle of my chest, into the squeezy machine was very difficult and not less than really painful.  But I smiled as the nurse told me that sometimes, they use the mammography machine to check for testicular cancer, and so I figured my pain wasn't nearly as bad as it might be for some others.

The ultrasound was much more pleasant.  The tech was very nice and allowed me to watch as she rolled the gadget over my chest area.  She checked my entire left breast and after 20 minutes suggested it "looked like a lymph node."  I nodded and smiled and said, "Well, that's good!"  She had the doctor check the scan and apparently he concurred with her.  So off I went, happy that my lymph nodes were catching nasty bugs and doing their job.

My friendly midwife called a week later and asked to see me.  She had the results of the radiologist's report which confirmed the likelihood of a lymph node.  I could see my primary care physician and sort of "keep an eye" on it, or she could send me to the general surgeon who could remove it.  I opted for the general surgeon because, frankly, I didn't want to spend the $35 copay to visit my PCP who would, undoubtedly, refer me to the general surgeon.  Let's just cut out the middle man and get on with it, okay?

Two weeks later, Ken and I are sitting in the general surgeon's office.  He has reviewed my reports, he says, and thinks my little lump is a fibroadenoma – basically a lump of fibrous tissue.  He does a manual exam, pokes my little lump (which now, many weeks later, seems bigger, but that's probably just in my mind), and says it's best if it comes out - how about next week?  Sure, why not - let's get this over with, I say.   Since it's small and should be easy, he suggests local anesthesia, and we make our appointment for the following Thursday.

When I arrive for my surgery - removing this fibrous little lump near the middle of my chest - the nurse informs me that I'm actually scheduled for a breast biopsy.  I frown; no one mentioned a biopsy.  She says they'll want to send whatever they remove to pathology, just in case, so it's a biopsy.  Okay, I think - piece of cake, let's do this!

An hour later (and after learning that my body does not tolerate local anesthetic), my little lump is removed.  The doctor leans over the drape above my head and says, "I got most of it; the edges were sticky and it was hard to get out.  I have some concerns."  And then *poof* he's gone.

On the ride home Ken tells me he was surprised at the gravity with which the doctor delivered the post-op news.  "I am concerned," he says, "but I think I got it all."  We instinctively know this is not a fibrous growth or a benign lesion; it is no longer a simple little lump near the middle of my chest.

We spend a long weekend talking, researching, reading, talking some more.  On Monday, we celebrate our 11th wedding anniversary, staring at the fish tank in Daryl's over a candlelight dinner of - what did I have?  I can't really remember.

On Tuesday morning I call the doctor's office, and he says the words I was prepared to hear - but not really.

I have breast cancer.

Specifically, I have invasive ductal carcinoma, or IDC, Stage 1, Grade 2.  He throws out words like, "oncotyping" and "HER2" and "radiation" and "lumpectomy."  He also is quick to tell me that this is "typical" breast cancer.

On November 22, 2011 at 9:45 am.  My life changes.  Our life changes.

Cancer is such a scary word, but in this diagnosis there is good news.  Stage 1 means the lesion is small - about 1/2 an inch, or just over 1 cm.  This is good news, because it is small.  Grade 2 means it is moderate.  That is also good, because it is not Grade 3 or Grade 4.   My cancer is not self-contained, rather it has spread to the surrounding tissue.  It is still good, though, because it the area is small.

I am scheduled for a lumpectomy on Monday, December 5th.  At that time the surgeon will remove more tissue from the area were my little lump was originally located, leaving clean "margins", hopefully without cancer cells.  At the same time my surgeon will perform a sentinal lymph node biopsy, or SNB, where he will check the lymph nodes under my left arm.  If they are clear, that is really good; if they are not, he will remove whatever he needs to at that time.

I will likely have radiation; I may or may not have chemotherapy.  Right now, the doctor says a mastectomy is "not likely" - but that can change, I know that, and I am prepared for that.  It's hard to make plans when I don't know what's coming, so living in the moment is more than a mantra, it's quickly becoming a way of life.



I have cancer, but it does not have me.