A tumor, tentatively named Lloyd

Hello, Carnation Nation!  I love you all so much.  I hope that for the past year you have been assuming that no news is good news, because you would have been correct.  I have wanted many times to share some of my highlights of Living with you, but I have not had a strong inclination to sit down and blog, which causes me to not make the time to blog.  (I've been doing a great job of exercising in my free time, including practicing yoga regularly at home in addition to attending a weekly yoga class.  If I'm not blogging, then I'm sure you'd like for me to be taking care of myself in this manner, yes?)  In the coming weeks I will try to recount some of the highlights from the past year to break up the stress that I am about to start sharing with you.

If no news was good news, then you might be thinking that the reason for this blog post can't be exactly good, can it?  You're right, it's not, but I'm going to try to overwhelm you with the positive aspects while discussing the bad news.  I assure you, the positive aspects are plentiful.

The brief backstory:  I have been having headaches for a few months now.  The headaches seem to me to set in on the same days that I receive chemotherapy treatment (which is still Herceptin and pertuzumab (Perjeta), every three weeks, indefinitely) and then slowly go away over the course of a week or two.  They aren't awful headaches; only once did I take something to make them go away, and it worked. I thought I was having some new treatment side effect, or perhaps even sinus inflammation from a cold I fought in early winter, and so I wasn't terribly concerned.

In addition, the treatment-headaches come with a treatment-fever, so that's been a bummer and weird.  No one as yet has an explanation for the fevers.

After 2 cycles of treatment that came with fever and headaches, Dr. Oncologist (Dr. O) said that it was time for some "pictures", meaning body scans.  She was far more worried about the headaches than I was.  I was worried about the fevers, thinking that my port was contaminated with a bacterial infection or something!  (We tested it; it's not.)  I saw her the Friday before Christmas for my normal infusion, and she scheduled the scans for the following week, which has been this week.  I had a PET scan and a heart echo on Wednesday, both of which showed Glorious results:  my heart is perfect, and the PET showed no evidence of abnormalities.  So I marched into my brain MRI this morning with all sorts of confidence, indeed with a bit of confusion as to why I had to proceed with the MRI despite a clean PET scan!  But I'm a good patient and humored Dr. O with the brain MRI.  It's a good thing I did because the brain MRI revealed a 3 cm tumor way down in the center of my brain!  Dammit, PET scans, you've been failing me!!!!

So now we've gotten to the bad news--I have a brain tumor in a location that is REALLY hard to biopsy, so we have to guess what it is and make our treatment plan based on that guess.  Here starts the good news, Carnation Nation:  1) we have a lot of data based upon which we can make a good guess and therefore come up with a terrific treatment plan; 2) you won't even BELIEVE how easy the treatment is going to be, and the side effect outlook is quite promising; 3) the tumor appears to have CLEAR MARGINS; 4) The only problem I'm having so far is headaches!

Let's march through the information in numerical order, shall we?

1) My grape-sized tumor, which I'm calling Lloyd because it makes me laugh, is located near my basal ganglia and thalamus.  If a brain cancer were to initiate on its own in that location, it would be a glioblastoma, and that would be very rare.  Considering my history of metastatic breast cancer (that is, breast cancer cells have previously been found to have spread to my lymph nodes and lungs, both of which are currently cancer-free), the doctors have concluded that it is far more likely that this tumor came from a breast cancer cell that ran away from the breast cancer tumor long ago and set up shop in this cozy little thalamus cafe in my brain (no, you may not have a cup of coffee, Lloyd!!).  It is impossible to know which kind of cancer it is without taking a little piece of it, a biopsy, to analyze its contents.  A biopsy is possible at certain institutions, but it would be very invasive and dangerous, so given my history we are proceeding to treat it as metastatic breast cancer tumor.  In this case, the treatment is RADIATION ONLY!!!  No chemo, no surgery!  Huzzah!!!  Louder!  HUZZAH!!!!

2) I encourage you to be excited with me about this treatment option!  Radiation will have its hardships, but this girl can handle it.  Chemo is the absolute worst, and brain surgery certainly sounds like it could be right up there with chemo.  But radiation?  I'll have a little fatigue, a little hair loss, and hopefully that'll be it!  And check out this radiation technology guys:  I will not be having whole brain radiation, I will be having Stereotactic RadioSurgery, or SRS.  This is not actual surgery; they use the word "surgery" because the radiation is SO precise that it acts like a scalpel, blasting only the tumor and not my valuable brain tissue.  Not only do the data show that this treatment is much more effective than whole brain radiation, but we have nothing to lose by starting with SRS.  We can always do whole brain therapy later.  Go ahead, ask me how many SRS treatments I'll be having.  Have any guesses?  Well, I bet you guessed incorrectly, because I'll only be having one SRS treatment.  Unbelievable!  This is a major score for the H-bomb (that's me, in case you've forgotten) who would really rather save her Paid Time Off for family adventures than use it on pesky cancer treatments.  ;)  BEST NEWS OF ALL:  The SRS treatment is 90-95% effective at killing this kind of brain tumor!  Huzzah huzzah huzzah!!!

3) I have had clear margins before, when Dr. Surgical Oncologist (now retired) removed my inflammatory breast cancer.  Clear margins is what you want when you have a tumor, because that means that when the doctors draw a line around it, whether it's with a scalpel or radiation or whatever, that line will encompass all of the tumor cells and not leave any wisps of cancer behind.  Since I'm not actually having surgery I don't understand how they will actually KNOW that the margins are clear (that is, they won't be able to conduct a pathology analysis), but I'm taking it as good news that the margins APPEAR to be clear.  I'll continue to imagine that they are clear. :)

4) So why on earth have I been getting headaches with treatment and at no other times?  No one has an answer for that, as of yet.  The MRI did show that my brain is inflamed in a rather substantial area surrounding the tumor, so this inflammation is likely causing the headaches.  It's probably a lot of pressure to have a grape-sized tumor and a bunch of immune cells in my air-tight skull.  Perhaps it's not that the chemo causes the headaches but that the chemo causes me to NOTICE the headaches because I'm generally not very busy or active on chemo days.  When I do have a headache, it feels like a dehydration headache, and a little like a sinus headache, and I mostly just ignore it.  Then when I get treatment my head feels like a watermelon being hit by a hammer, or perhaps a ripe watermelon wishing it were getting hit by a hammer to relieve the pressure.  This last chemo treatment, I took Claritin D for 5 days and got through the worst of the headache, pain-free.  I stopped the Claritin D and now have a small niggly headache, and honestly a niggly headache could have been going on for months and I haven't really noticed it.  Pain level 1 on a 0-10 scale, 10 being the worst.  In hindsight, now that I know that I have a condition that should have been causing headaches, I think that I probably have been having a persistent small headache for a few weeks now.  But hindsight is cheating.  :)  Okay, but I still haven't said what I set out to say in point number 4, which is how grateful I am that headaches are my only problem.  Problems associated with issues in this brain location include difficulties swallowing, talking, and with small-motor skills (it's the same part of the brain in which patients with Parkinsons are aflicted).  To the best of my knowledge, I have not been having any of those issues.  Again, a major huzzah goes here!

Side effects of SRS, Short term:  These side effects are ridiculously mild, as I mentioned previously.  Fatigue for a few weeks, and possible hair loss around a band of my head where the radiation will enter my skull.  My top hair should cover it up sufficiently.  These side effects will be manageable thanks to my awesome family, friends, and colleagues who will no doubt help me get plenty of rest (provided I can get out of the Zone for a few hours a day).

Side effects of Lloyd or SRS, Long term:  Alright, these are a bit more bummer-y, but they are rare-ish (I didn't write down percentages in my notes, but as I recall they were each very good numbers, in the neighborhood of 10%) so I'll take it.  The two main potential long-term side effects are as follows:  A) radiation necrosis at the boundary of the tumor.  This means that the radiation could cause tissue damage to the brain cells very near to the edge of the tumor.  Nerve cells are hardy, so this doesn't happen terribly often.  But when it does happen it's bad because your immune cells go in to clean up the dead brain cells and cause an even bigger problem.  They start a chain reaction of damaging further nearby cells, extending the brain killing-spree out farther and farther into healthy brain tissue.  The only way to stop it is to surgically remove the necrotic brain tissue--boo.   B)  The tumor could be invading the basal ganglia.  I'm not sure how this relates to my so-called clear margins, because it seems to me that if I have clear margins then this would not happen, but Dr. Radiation Oncologist (Dr. RO) listed it for me, so I'm listing it for you.  He also said that the basal ganglia is "durable".  I have no idea what on earth that could possibly mean, but it's a terrific word and I'm going to hang onto it.  Its durability is perhaps why the invasion of it by the tumor is rare?  But I would think that this issue would be dependent on the cancer itself?  I have no idea on this one, guys.  I'll try to find out more.

Either A or B would be a bummer in terms of the potential side effects.  Dr. RO said that weird neurological things could develop over the next year if either A or B play out, such as loss of small motor skills and other functions of the basal ganglia.  Obviously that would suck a whole, whole lot, mostly because I still haven't finished the afghan I'm crocheting for my brother's wedding (he married an intelligent, kind, and fun-loving soul [a catch!] in September 2017; I'm just a tad late) so I need small motor skills at the very least until I get that done.  I have my priorities!!!   So we'll keep an eye on possible side effects A and B over the next year, and I'll use my magical healing powers to focus healing thoughts to my durable yet precious basal ganglia and thymus.

Other item:  Today I had to start taking a steroid to reduce the inflammation in my brain, because the inflammation could cause damage, seizures, etc.  I'm taking my old pal, dexamethasone.  Ugh I HATE dexamethasone.  I have to take this twice a day, starting today, until well after the procedure (because the SRS treatment could cause further inflammation). Indeed, this blog post was brought to you by The Zone, the dexamethaZone, plus the discomfort caused by the fact that my daughters wanted to have a slumber party with me and I was squished in between their bony knees and their new body pillows, ha.  ;)  My heart was pounding to a Shakira song that Lloyd was spinning for me to the beat of my heart literally on steroids, so I had to get out of bed and release some nervous energy.  Hopefully after blogging I can overpower The Zone, and Shakira/Lloyd, and get some much-needed rest.   

Other item:  What happens to the tumor after it's killed?  They clearly have no intention to surgically remove it, so what will my body do with it?  Typically this treatment will shrink the tumor by half, and then my body will try its best to break down what's left, calcify it, or turn it into scar tissue.  These are three separate processes that will be going on simultaneously, so Lloyd will be a minimized, calcified scar.  I'm cool with that.

Other item:  One additional question I have for Dr. O, when I next see her, is why this tumor didn't and hasn't shown up on my quarterly PET scans?  I've seen the pictures--it's not there.  And I want to know why.  Related to this point, I will now be having quarterly brain MRIs; that's according to Dr. RO.  The purpose of this is to keep our eye on Lloyd for changes, and to make sure Lloyd doesn't invite any friends to the cafe.

I am to the end of my list, and I still can't imagine sleeping, but at least now that I've got these words out of my system perhaps I should try to read myself to sleep.  I'm starting a new book, which although exciting, doesn't do a good job of beckoning me to bed.  When I'm engaged in a good book I can't WAIT to go to bed.  So I gotta get this book started so that it can help me counter the Zone.  Goodnight, everyone!  Thank you for being a part of my team!  My health and my family greatly benefit from your support, even if it's exclusively virtual.  xoxoxo

Apologies for any typos or errors; this post got rather long, and every time I read through it I find a small edit or correction, so I'm sure that there are more in there.  I think I checked all of the links, but please let me know in the comments if you find one that doesn't work. (>")>

Legacy

My siblings and I would spend the whole summer at the rural library, subsisting on air conditioning and literature.  We would ride our bikes up to main street, park our bikes in the rack, and read book after book in the underused, over-firm stuffed chairs.  When we tired of the Babysitter's Club, we'd turn to the nonfiction section and let loose our imaginations.  The book about the Presidents was one of my favorites.  When opened on the table it was the size of a newspaper, with full-page images of painted portraits of each President, and short descriptions of their presidential terms.  I loved to reconcile the portrait with the term, imagining how Tyler's chin-length up-do contributed to his legacy or lack thereof.  Or how the weight of the Civil War seemed to be captured in the portrait of Lincoln.  I puzzled over the presidents who were nearly or actually assassinated, uncomprehending of the passions that could lead to such extreme violence.

Tonight I listened to President Obama's farewell address, and I couldn't help but think about this book of presidential portraits.  What will his portrait look like in the book?  What will the overview say to my grandchildren?  I imagine him smiling on the last page, his legacy not yet defined, having led with an idealism unmatched by any previous president.  If only Michelle could be painted at his side to complete the portrait of his leadership and grace.

In November I was in DC for work and spent an evening with two dear colleagues on the National Mall.  It was a cool, clear night with a full moon, merely a week after the election.  I had felt confused by the election, both by its outcome and by what it would mean for the future of all citizens and would-be citizens.  I also worried about what it would mean for my job, my healthcare, and my childrens' education.  The Mall, however, lifted me up.  I felt grounded by the monuments that Americans have made to commemorate the truly great people and accomplishments in our history.  We have suffered many low points, as any great nation does, but in the end we celebrate the high points.  We will continue to have high points to celebrate.

Me, on the approach to the Washington monument

The moon and the monument

Me, reaching for the top although I cannot see it.  Always reach for the top although you cannot see it.

The monument reflecting on itself as I reflect on it, by the light of the moon

After our fill of the Washington monument, we made our way through the World War II memorial.  With intention I walked around the pond, placing each foot on the stones around the perimeter.  So much fighting to free the oppressed and to protect democracy.  And a turning point for women, who were essential for the war effort.  

Inscription on the WWII memorial

 Then we walked the steps up to the Lincoln memorial.  The hall was solemn despite the 50-odd tourists who occupied the space.  People arranged photos in hushed voices, not wanting to disturb the meditations of others.  Lincoln, who for all his imperfections held this country together and laid the foundations for freedoms that we are still working to perfect.

What is he trying to say?

 It was getting late, and we had walked a great distance, but I felt that I needed to visit Martin Luther King Jr.  One of my colleagues had never seen his memorial, and it felt wrong to skip it on what by now felt like a pilgrimage to renew our faith in our country.  Dr. King's memorial is my favorite because I find it incredible that his statue is displaced from the mountain of rock behind him despite a chunk of the mountain remaining attached to his back.  The symbolism is overwhelming.  This was my first time beholding it at night.  I hope to always behold it at night.

What would he say now?

The next morning was absolute perfection, and I had discovered that the Iwo Jima memorial was just across the street from my hotel.  An impulse I couldn't ignore beckoned me to the statue that morning, so I skipped breakfast, checked out, and dragged my roller suitcase to the memorial with only 17 minutes before my shuttle was to arrive.  I regret not waking up an hour early so that I could sit with it for awhile.  Perhaps I am biased because my husband was a U.S. Marine, but I was awed by the statue.  It is bigger than I imagined, bigger than it looks in pictures.  It's as tall as my 2-story house, plus the flag.  And the faces of the men at that scale.  Their faces.  My eyes mist over thinking about it.

For their country, even though they might not ever see it again.  

All of these monuments to commemorate freedom from monarchy, freedom from oppression, freedom from slavery, freedom from authoritarianism.  Do we remember our history enough to avoid repeating it?  The monument makers urge us to remember.

In summary, which I say only to trick you into thinking I actually have some way to summarize my thoughts, tonight the President said that, "...presuming a reservoir of goodness in other people is a risk..."  I am ready to go forward and take that risk.

I suppose that this post is ill-placed on a cancer blog, but I guess I had something to say.

grat.i.tude (noun)

She interrupted our dinner conversation and patted my arm,  her big blue eyes boring through me with the little golden rings around the pupils.  "Hey mom!  Mom!"

"What is it, Eleanor?"

"Remember that time when you had cancer?  And you got really sick and almost died?  And anyone else who had your type of cancer died?"

"Yes, Eleanor, I do remember that."

"But you didn't?"

"That's right, I didn't."  I raised my arm to give her a fist bump, her favorite salutation.  She simultaneously cocked her arm for a high five.  So I opened my fist and raised my arm to match her high five, just as she lowered her arm into a fist to match my fist bump.  We all started giggling, and I admitted that I'm pretty much the worst high-fiver ever.  I'm so bad at high-fiving that my brother once gave me lessons to improve my high-fives.  Look at the elbow, he said, not the hand.  My high-fives are better since that time, but clearly there is yet room for improvement.

Ian then told a legendary story about pretend high-five classes that I had to attend, and how he would help me practice so that I could pass my high-five exams.  We all put our hands up over our dinner plates and he performed mock high-five drills, high-fiving Eleanor and my hands in rapid succession.  She could barely hold her hands up, she was laughing so hard.

"Now you, try, mom!"  She wanted to see my high-five prowess as I executed my drills.

I raised my right hand ceremoniously over my right shoulder, licked my lips, and proceeded to methodically hit and occasionally miss her hands.  I arranged my face in mock concentration, furrowing my brow as I pretended to aim for her hands but actually aimed to miss just a bit.

"Mom, you only hit my thumb that time!" she chortled.  "You can't even hit the middle of my hand when you high-five!"  She was now celebrating my terrible high-five abilities, too.  How delightful to share this family inside joke with her.  How marvelous to be silly at dinner while Azalea played the piano with her instructor in the other room.  How fortunate to be full, and to take time to digest over giggles.  How exciting to laugh on an ordinary evening.  An extraordinary evening.  So many extraordinary evenings.

Indefinitely

I was recently invited to write a short essay for the magazine Living Well.  What follows is are the first and last paragraphs of that article.  Please click here to read the rest of the article on the magazine's website.  I am grateful to two friends, S. and D., who were my creative editors for the piece.

My hair is always the first part of my body to know that I have cancer. With each diagnosis, I made arrangements for someone to cut it and give it a cute albeit temporary style before the chemotherapy forced it out of its follicles. The first time I was diagnosed with breast cancer, my sisters’ friend gave me a pixie cut in the kitchen. The second time, I gave my young daughters the scissors and told them to have fun. After each cut, the hair follicles ached as they were bent in new ways, springing up with foreign lightness. It is this feeling on my scalp that affirms that I am not dreaming, that the course cannot be altered, that the reality of cancer is upon me. 

I was diagnosed with stage III inflammatory breast cancer (IBC) four days before my thirtieth birthday. I had felt a firmness in my left breast for 18 months, but since I was breastfeeding my second daughter at the time, various medical professionals told me it was a clogged duct. Or something unknown, but certainly not breast cancer. When the lump persisted after I finished breastfeeding, I found a new surgeon who was willing to perform a biopsy. While he was retrieving the biopsy sample and I was still on the procedure table, he told me that the tissue looked good and there was nothing to worry about. 

Until his nurse called me at work the next day. You have cancer. Go to the clinic. You have an appointment with an oncologist. Wait as long as necessary to speak with her.

Thus began my journey with breast cancer six years ago. My daughters were merely 1 and 3 years old. 

At first I had so many questions that I didn’t know where to begin. What does Her2 positive mean? What is the prognosis for IBC? Why had no one detected the IBC? What is going to happen to me? After chemotherapy started, my brain became too cloudy to hold on to new questions that sprung up in between doctor’s visits, so I started jotting my questions down in a notebook and bringing it to my appointments. 

...

Now I am 2 years past my second mastectomy, and I am NED—no evidence of disease. NED is the closest medical declaration for “cured” that will ever be handed to someone with stage 4 breast cancer. Indefinitely, now, is lovely. Indefinitely stretches out before me, three weeks at a time, as the anti-Her2 drips into my bloodstream and prevents new cancer from emerging. Indefinitely includes chaperoning my daughters’ elementary school field trips, gardening with my husband, hiking with my brother, and traveling around the world to give presentations on microbiology. That which used to scare me now empowers me. Indefinitely.

Do you know how long you will live? Neither do I. There are no data to inform my prognosis. The survival rates are poor for Her2 positive cancers, pretty awful for IBCs, and positively abysmal for stage 4 cancers. But one of my anti-Her2 drugs has only been on the market for a few years, so there are no data on long-term survival rates for patients who have been treated with this drug. I am generating the data with each breath. Because of this, no doctor can project how long I will live. That makes me not so different from most people. And we all have so very much living yet to do.

--excerpted from "Don’t Be Afraid To Be Your Own Advocate" by Heather Allen, published in Living Well Magazine in October 2016.  [I did not give my piece that ugly title!  I had much more creative titles that the editor apparently didn't appreciate.]

To read the full article, please visit my article at Living Well Magazine. 

Be well!

Advocacy overload

The same person who presented me with the opportunity to write an essay for Living Well magazine hooked me up with a few more projects near the end of September.  I gave a live interview at the local NBC studio regarding cancer survivorship and patient advocacy, and I recorded a public service announcement for a local radio station for breast cancer awareness month.  It was all quite a lot of fun!  I can't remember ever being in either a TV or radio studio before, and both were different than I expected.  The TV studio was spacious; the radio studio was closet-like.

TV interview on breast cancer awareness

Video interview on breast cancer awareness recorded at the radio studio

I have copies of the radio PSA clips, but I'm not sure how to post them.  I suppose you'll just have to listen to the radio this month and hope you hear it.  :)

Fortune

August was a month of great fortunes.  The PET scan was once again all clear, with a minor exception of a possible blood clot in my neck.  A neck ultrasound revealed that it was nothing, and so I go on living as a NED person -- no evidence of disease.  The great fortune of being NED is sometimes overwhelming, but it's a burden I'll happily bear.

Additionally, I was invited to write a short essay for the magazine called Living Well.  I'm presuming that it's for an October breast cancer awareness issue or something.  They want to publish a small series of essays on the diversity of breast cancer:  one written by a doctor, and two written by patients.  They targeted one patient with early-stage disease and one patient with late-stage disease.  Remarkably, I am the patient with late-stage disease they invited to write a piece.

At first I felt that it was a bit disingenuous for me to write the late-stage disease piece because I am not living with late-stage disease.  I am living with a late-stage disease diagnosis, but not the typical manifestations of late-stage disease.  It turns out that that is what they were looking for:  someone who could put an atypical face on late-stage disease.  The person certainly could be me.

So, I wrote.  The first page of stuff was crap.  I had trouble knowing where to start.  Perhaps I'll turn it into a blog post, lol.  Then it started to get better as I wrote the easy stuff about the timeline of my journey.  Then I thought of a pretty sweet introduction, so I went back and rewrote the beginning.  Then I rambled as I discussed the second cancer, and it was just feeling like a whole lot of cancer treatment (maybe because it was a whole lot of cancer treatment, lol) so I cut some details.  Finally, I thought of a poignant ending and finished it up.  I solicited feedback from two of my writer friends, edited the piece, and sent it off tonight.  Woo hoo!

It was quite fun, really, and didn't take that much time once I let go of the pressure associated with writing a real-live article rather than a blog post.

Another cool thing I did this month was a tiny bit of activism.  I was invited to sit on a panel discussion of safe routes to school in my town.  I was invited because apparently I organized the first Walking School Bus in my town.  This sort of cracked me up because I didn't even know I was doing it.  I just wanted to walk my kids to school every day, and I figured that some neighbors might be interested, too.  So two years ago I started lightly coordinating about 4 neighboring families, and we all walk to school together.  Sometimes if a parent is sick or has an appointment, they just send their kids with the group, myself included.  We used to text each other at 7:30 am or so ("walking today?" or "running late!"), but now there is no question and everyone just shows up at the designated corner at the designated time.  We have anywhere from 1-4 adults with 2-12 kids, and we walk pretty much rain or shine.  In 1986 this would simply be walking to school, and it would be normal.  Today it's a Walking School Bus, and I'll go down in the history books as organizing our town's first.  Lol.

I also went to Montreal for a work conference where I heard about some amazing microbial ecology. I hadn't attended this conference since 2010, and it was scrumptious.  I have over 20 pages of typed notes (nerd salute!) and wish there had been two of me to catch the other great presentations I necessarily missed by being confined to one seminar at a time.  Also, this conference has one of the best conference dinners of all, with a DJ to spin some crazy beats and get the mad scientists dancing.  At 9pm the dance had yet to start, but my buddy A and I decided to change that.  That's right, with our labmates we opened the dance floor and got that party started.  A crowning achievement, to be sure.  

Are you there, blog? It's me, Heather.

At least twice a month I think of something that would make an interesting narrative for a blog post, and then I don't make the time for a blog post.  That ends now.  Thanks for being here when I need you, blog, and for not being offended when I neglect you. 

I've arrived at another PET scan eve, and I find myself more nervous than I have been in awhile.  I feel healthy, alive, happy.  I have no reason to suspect that anything cancerous is happening in my body.  My brain knows these things.  However, something inside of me is whispering to my brain that I may have reached the statute of limitations on clean PET scans, even though my brain knows that that is nonsense and border-line superstitious.  This thing reminds my brain that the interval between my two separate breast cancers was two years, and we've nearly reached the two-year anniversary since my last mastectomy, so the next cancer must be just around the corner.  My brain counters this voice with a resounding, "Nonsense!  Those data are statistically unsound, and also meaningless because you've continued tri-weekly treatments with Herceptin plus a drug (Perjeta) that didn't exist the first time you had cancer.  Any cancer inside of you is continually beaten down, and it will continue to be beaten down indefinitely.  Besides, there's nothing to be afraid of, it's just a little PET scan."  

Just a little PET scan.  

The brain continues.  "Silly girl, the PET scan serves an important role for someone who is living with stage 4 cancer.  The cancer could indeed flare up at any time, and that's why we do the PET scans.  To catch the emerging cancer.  Avoiding PET scans would be irresponsible at best, and negligent at worst.  Stop this fear-mongering, take your PET scan, and chillax."

Oh, brain, what would I do without you?

This conversation with my brain reminds me of another one I had back in June.  My dear friend R was visiting from Massachusetts, and we were having a normal conversation about normal things.  Somewhere in that normal conversation I said, "...when I get cancer again...".  She stopped the conversation in its tracks, and instead we discussed my choice of the word "when".  R prefers the word "if", as in, "if I get cancer again".  I reasoned with her that I used to use the word "if" when I was a cancer-free human, and I even permitted myself to use the word "if" during that time between the cancers.  I have since tried to refrain from using the word "if" when I talk about my future with cancer because it causes my heart to jump into my throat.  You see, the problem with "if" is that it comes with a truckload of uncertainty, and that uncertainty breeds fear.  I hate living with fear.  In contrast, the word "when" takes the uncertainty out of the equation and reduces my fear.  It helps me to accept the entirely probable possibility that I'll have to deal with cancer again in a big way in my life.  Indeed, I continue to deal with cancer every third Friday when I go to the clinic for two hours of cancer-fighting drips.  But this kind of dealing-with-cancer is easy to marginalize because it doesn't interfere with my quality of life.  

I learned from my conversation with my friend R that the problem with the word "when" is that it unnerves some people, including some of those in my support network.  Cancer-free humans probably take comfort in the distance provided by the word "if" because they don't have to visualize cancer or its fall-out.  That's understandable.  But those of us who've had cancer lack the luxury of distance, and we benefit from the power that comes with the word "when".  It's a small power, but important. 

I feel very fortunate to even be having these conversations with myself.  I was diagnosed with stage 3 inflammatory breast cancer almost 6 years ago, the diagnosed with stage 4 ductal carcinoma in situ breast cancer with lung metastases nearly 2.5 years ago, and now here I am with no evidence of disease.  It stuns me to think about it, so I don't think about it very often.  I just breathe deeply and express my gratitude for this day, and the next day, and the next day...