Taking the Scenic Route

Tis the Season

It is a foul and blustery day.  It's only one o'clock in the afternoon, but the sun might as well be down-- it is clearly twilight.  The rain is incessant, coming in waves, pounding on the roof, then letting up, only to return twenty minutes later as a torrent that overflows the gutters, tests the roof seams (they fail in places), looking for ways in around doorways, window frames, the chimney.  The old house does its best, but I've had to learn the strategic positions to place old towels so they can absorb this "gift" from the sky.

The creek is running high and fast, though not so high as December '07.  During rain breaks I walk the property and marvel at the changes the season brings.  The gurgle of the heavy creek feels solid and alive.  The splooshes and whorls of current make noises like a large animal kicking out from below the dark surface. I imagine it contains an ancient sturgeon or two, surfing the turbulent and muddy roils, reveling in the cold storm of winter, feeling alive again after the slow warm meander of summer.

The ground is spongy, unstable.  I wonder where the nutria have escaped to, where they go when their creekside burrows are fully submerged.  The pigs call out their greetings to me from behind the barn, telling me about everything they have unearthed today, complaining, commenting, exulting.

Finally my ears are so cold that my molars ache, and it is time for a retreat into the house, and out of the rain.

The tree we put up on Sunday glows warm and self satisfied.  She is shocked, I think, to have landed in the living room.  But she is pleased with herself, wondering if she will ever be able to explain this new experience, this shocking turn of events, this "transportation", to the companions she left behind.  We took her out of the lower field, near where the driveway enters the property from the road. 

She and some of her sisters were unfortunately sited, and they have observed my critical appraisal of them for some months.  Planted by previous owners, these few indeterminate little firs are directly underneath power lines that lean in over that front part of the property.  The real shame of their placement is that they were planted immediately north of a couple of lovely old crab apple trees, which means that a few more years of growth by the firs will crowd and shade out the crabbies' only direct sunlight.  Unfortunately, the firs must go.

So yes, I have been eyeballing these three, and thinking that at least one of them might do as our christmas tree this year.  A little scraggly perhaps, and quite thin on the backside, but then again we usually put the tree up against a wall anyway, yes?  And better a turn through the house than straight to the burn pile has been my thinking.

Last Sunday afternoon, in between rain squalls, Bob and the kids and I put on our boots and found the handsaw and went down to the lower field to choose.  There was some controversy. One of the tree sisters was deemed a little short and may be left for next year, but then Luke became very upset with the aesthetic limitations of our choices.  In the end, we made a choice, and I cut her down and then Bob carried her up the driveway to the house.

So here she is now.  Elegant dowager. As young as she may be compared to the big firs, the crab apples, and the old cedars who remain edging her former field down by the road, she appears to have gained a certain maturity on arrival.  Her lights shining out against the gray dimness from the windows, the first phase of ornaments are carefully arranged on her branches.  She does not yet know about the glory of glass ball ornaments, which I imagine she will find thrilling, excited to see the delicacy of her fine needles reflected back at her.  Her skirted branches spread a little further than I'd imagined they would, but give me the sense that when we set her down here she looked around, approved of her new status and settled, spreading into this new phase of life. 

The calico cat has taken to sleeping beneath her, and I suspect that the cat has noticed as I have, that the tree is breathing out a fine wet pure air, bringing in the freshness from outdoors.  It is not a smell of pine or fir, it is not a smell at all: it is simply clean, a release of oxygen and moisture as this tree breathes us out her last.  The cat has noticed this too, knows that this is a treasure to be near.

I imagine that even with her youth, her inexperience, and her surprise to be the center of attention and suddenly thrust into this indoor world of noise, this little tree is not unaware of how it will play out for her.  I even imagine that she is not sad about her future.  I imagine that she is grateful for this diversion through the house.  I know that all those trees have had an idea what my eyeballing in the field was about anyway.  I imagine that every moment is to be accepted, enjoyed.

I sit by the wood stove, enjoying the way the heat penetrates my achy joints.  I knit away at the Christmas gifts I should have already boxed and mailed.  I enjoy the noise of the rain on the roof, the drift of sweet air from the tree, this quiet time to myself in my favorite place on earth while all my children are at school.

It seems like I always begin to write a blog entry to tell some news, and then get off onto some other scenic detour.  I don't mean for the "news" to be like some big gotch-ya at the end of a post, but I suppose it often feels like that.  Let's see if you can take all the writing that preceded this, hear the news, and then go back and figure out how to integrate the news with the writing.  Ready?  Go.

Last week I went in to get a full set of scans: CT scan, bone density, echo-cardiogram.  The final word?  I'll quote from the CT scan report: "No evidence of recurrent or metastatic disease in the chest, abdomen or pelvis."  This is great news.  This is amazing news.  This is the kind of news that we have all been waiting for since this whole trip started. Right?

So why am I not jumping up and down, why was this not the title of the the post?  Should have titled the post "AMAZING NEWS!!!"  "Why the hell is she writing about rain and cutting down Christmas trees, and sounding all melancholy?  Oh my god, is there something else she hasn't told us?  Where is the other shoe... I am waiting for it to drop."

That's the thing.  There is no other shoe.  There is nothing but this good news (well, there is a bit of an issue with the echo-cardiogram, but that's not really a big deal, just a "keep an eye on").  I'll write it out again: there is nothing but good news, this is great news.  So why am I not ecstatic, sending word immediately to everyone I know?  Why am I not planning a party?

My mother shared the CT scan news with family members last Friday during a round robin of group emailing to figure out a future family gathering.  I got mad at her for sharing the news in such a group way, even though it was just with family and close friends.  I can see why that might seem ridiculous to most people, getting mad at someone for sharing such good news, especially when I have been so open and so public about my experience with this disease.  Part of my anger came from not having had a chance to absorb the news yet myself.  And part of my anger was also from the frustration of feeling like the news of the clean scan was being presented without the context of my experience of it, and from my fear that people hearing the "good news" would not understand both how monumental it is and yet how unimportant it is at the same time.

My stepmother is fond of reminding me that this cancer journey is a marathon.  So I'll use the metaphor here too.  When you run a marathon, do you celebrate the pass of the first mile marker, or the second?  The last year has been a waking to my understanding that yes, this is a marathon, a race that will only end when I do.  The good news about my ability to beat back the cancer with medicine and attitude and sheer will becomes the bad news that the finish line is further and further away. 

Like most everyone who shares this story, including you my audience, I used to think that I could be "finished" with this disease.  This is what most people are allowed to do now with early stage breast cancer, doctors allow themselves to speak of "cures" and they are right, statistically correct to do so.  With my metastatic, stage 4 cancer I still live in the linguistic, psychological, and medical limbo of "incurable." No matter how clean the scans are.  There is no check box for me that says "done with cancer."

The fact is, I know that this is NOT the last CT scan I will ever have, and that I will have them again and again in the years I expect to come.  I also know that I will continue to take various meds, keep seeing my doctors, live a good life, whether the cancer ever reappears or not.  I will do this and the finish line will stretch further and further away from me.  There will never be a celebration for "beating cancer." 

Maybe this is why I intuitively inisted from early on that cancer can't be my opponent, my discomfort with visualizing it as a "fight against cancer."  The problem for me is that I am going to have to learn how to "live with cancer," because cancer is my companion, the reason for this marathon, and... if I am going to celebrate anything, then it will be in celebrating how long and how well I am running side by side or ahead of cancer.

And believe me, I want to celebrate.

And so I do celebrate.  Quite a lot, though in ways that are likely more quiet and persistant than you would imagine.  Go back and read the first part of this post, see if you can hear the resonance in there.  Maybe it sounded melancholy your first time through.  See if you can hear it in my voice here.  I am proud to be alive.

I am alive to the world. 

I AM struggling at times: through the dissatisfaction of having to figure out how to live with this new body, with the side effects from drugs that give me the best chance of a long life, with recovering physically and mentally and financially from how these last two years have played out. 

But despite struggle, because of struggle, I can... be.  I don't mind the mistakes I make, or that others make.  I can forgive, I can accept, I can get angry, I can get over it, I can begin again, and I can sidestep drama like a kung-fu queen. I can love.  I can notice, I can write, I can look my death in the eye.  I can be, I can love, and I can laugh.  I am alive to the world.

I can ask for my own party and then demand that my friends make speeches. I can sit and be happy to hear the rain.  I can accept that there is no one answer, no one "right way," and that there is sometimes, or often, no answer at all to the question "why?"

As a 41 year old mother of three, I can go to the mall and ask Santa for MY turn, and never once tell him that it is my secret way of to keep running in my marathon with cancer.  I want to whisper in his ear, but don't, don't want to burden a real man the poignancy I know I will impart. No need for Santa to be crying at the mall.  I am content to let him imagine all the banal things he and elves might conjure seeing this young dowager perched on his lap.  I am content to keep my counsel, no need to correct assumptions. 

But I will take the time to whisper it here: "Thank you Santa for giving me the gift of this year.  If I am asking for anything, it is for the chance to see you again next year and hassle you with my kids once more.  You stay healthy, and I'll stay healthy, and I'll check in with you next December."

I am content, I appreciate, and I am all the time trying to expand my sense of that, of the goodness that just is in the world.

Tis the Season my loves.

The Christmas tree that was just a "little tree in the field" a week ago-- it really does give off a fresh breath of air in my living room.  I can smell it.  I breathe deep.

Hiding Out

Yes, I admit it: I've been hiding from you.

Yes, all of you: you know who you are.  I haven't been returning your phone calls, your emails, or posting blogs.  I haven't been responding to mail or blog comments or facebook posts.

Yeah, I've been hiding out.

I've been hiding out while still living my day to day life.  In fact the day to day has been more "normal" in the last month than it has been since I found that lump last February. 

I can now take care of the kids all day, and we started the school year this month. The boys are on soccer teams, Emme's doing preschool, I'm doing our laundry and grocery shopping, and we're slowly getting the property ready for fall & winter.  My body is healed up nicely from surgery, and I may even be coming to terms with the hormonal waves I have to surf because of my abrupt drop into menopause.  I'm still going for my Herceptin drips every 3 weeks, and plotting with my oncologist about next steps in treatment.  I'm knitting a  sweater for Emelia, I'm cleaning out my office and getting back on top of my work for our business.  I've been picking blackberries, making jams, going on dates with my husband and out for drinks with my girlfriends.  Yes, I've been living a pretty full and active life lately.

Nonetheless, I've still been hiding out.

If you knew how many times over the last eight weeks I had started this particular "hello again" blog post and then deleted it (fifteen times? twenty times?) then you would understand the extent of the problem.

Cause it is a problem, this hiding out. 

It's dishonest.  It's leaving you all with the impression that everything is all hunky dory perfect when I know it's not.  Don't get me wrong---physically I am still doing GREAT, no cancer known as of this writing... but that's the point: there's no real certainty on this path.  And my guts and my brain, the core of me knows this: it's not over yet.

Dealing with metastatic cancer is not a simple story, even when it turns out that you might have a knack for making miracles happen.  'Cause even if you can clear the cancer from your body, there's still an awful lot of thoughts and emotions that seem to pile up inside, none of which are easy to sort, or easy to process.  And let's be honest about the big fear: where has all that cancer gone?  Is it hiding out too?

You all know that the last post I made, the "bring on the sunflowers!"... you all know that wasn't really the end of the story, right?  No worries if you thought it was: it was a pretty dramatic post, and still remains great news....

But it's time to understand that it was really just... the end of Act One.  So now, we've been in an intermission for awhile, but the interlude is ending.  As your playwright and main character I promise to get back on stage and fill in the gaps, make sure the throughline is clear.

No big drama!!  No awful news, I promise!  It's just that this story is nowhere close to being finished.

The seasons turn, we spiral towards a new year.  Sunflowers do the thing they do best: make seeds and get ready for the spring that is to come.

In future posts I'd like to share with you more of the question marks, more of the loose ends that I am trying to figure out.  Some of these future blog posts may be a little less polished, a little more raw.  Some future blog posts may even appear to have nothing to do with having cancer (hmm, now that sounds exciting!)

Thanks again, and continuously, for all your support over the months.  And thank you for reading these words--I need to be doing this writing, and your kind and generous comments here keep me honest, even when what I'm feeling and trying to write about seems elusive or confusing to me.  Thank you for joining me on this journey, going the long way on this scenic route.

I'll quit hiding now.

Resolved: Today's Chemo Treatment & the CT Scan Results

My sister Kate is here again from the bay area.  She arrived Saturday evening, and is a blessing with her presence.  She is so fun with the kids (she brought them a slip-n-slide!) and has been eager to help with any necessary farm chores.  Helped me plant sweet potatoes yesterday.

And she took me to my 8:15 am check in for today's treatment.

We got the scan news pretty early.  And it was great!  Bob wasn't there yet so I asked Nurse Sandy if she would have Dr. Chui come see Bob when he arrived, and tell him his interpretation of the results.  As always, Chui pulled no punches, but made things even more dramatic.

The tumor in my breast is basically gone.  It is so gone that the radiologist assumed it was a post lumpectomy scan.  The lymph nodes in my chest and armpits are all "resolved" or back to normal size except for one, which is smaller, but still too big.  In my lungs a diffused "glassine" area of budding cancer cells has disappeared.  There remains only two distinct lumps in my lungs, one of which is smaller, one of which is stable.  In my liver there are four areas they are watching: one they suspect is not metastatic but a fatty deposit, one is smaller than before, two are stable.

The important thing is: nothing new is growing, everything is mostly shrinking, disappearing, or at worst a few stubborn spots are the same size.

Dr Chui's comment to Bob: "I think most of those spots are just scar tissue now: you kill the cancer cells and something stays behind."

All this is just at the halfway point of treatment.  The treatment plan works: as does the acupuncture, the Qigong, the energy work and meditations, and most of all: YOUR support and prayers.  This is how blessings and miracles occur.

I thank you thank you thank you!!

The next nine weeks I expect to be much harder for me physically (and mentally) than anything that has come yet.  With the help of family and Stacey and the BRAS team we are lining up our household help and help for while the kids are out of school.  I am going to need even more down time to recover, more help with basic needs, so I can focus on keeping my body strong and meditating on the shrinkage of those remaining spots.

I really need to avoid exposure to any new cold or flu viruses too.  This last one while mild is still about more than my body can handle... but more thoughts on that for another blog.

What great news, eh??

My new favorite word is "resolved."

I should post some verbatims from the report, the medical-ese is classic.

The chemo treatment went groovy good, pretty easy with the high of the good news, and Kate there to keep me company.  I feel young and strong and lucky while I'm there (ahem: steroids!!).  Afterward we ran by my favorite feed store in Portland for the organic chicken feed for the girls, and then stopped at the tile store to price out the new bathroom tile we'll get tomorrow or Wednesday.

Tomorrow Stacey takes me back in for my white blood cell boosting shot of Nuelasta, and then I get three weeks at home until chemo #5 on June 22nd.

Blessings to all of you!  What a great June it will be!

CT Scan this Friday

So, not a PET scan, just the CT scan (I don't know why,) Friday morning.

This will be the much anticipated scan to see how my body is responding to chemo.

I have a couple fantasies about this scan and the results I hope for.

The first fantasy, which I have since rejected, is that they would send me through and I would be so miraculously clean and clear that they would all be shocked and puzzled and would insist on sending me through again, just because they wouldn't believe I could be so healed after only three rounds of chemo.

But as I said, I've rejected this fantasy, because I came up with a better one.

In this version they send me through and I am so clean and clear that the technicians and my oncologist and all the doctors give each other knowing looks and high fives, but then they say they've seen it before, occasionally, in fact it's been "documented in some scientific findings" as a possible outcome, and then they give me a reprieve and say I don't need to do any more Taxotere, I'm done with chemo, just Herceptin for the rest of the year.

Because here's the deal, I know they wouldn't just let me stop chemo unless there's some data to back that up as a solid move.  And because I am so mentally tired of the side effects of the chemo, I'd happily trade in my planned miracle for a reprieve from the drugs.  Yeah, I'd love to have the chemo just stop.

I'd love to get the feeling and strength back in my fingertips.  I'd love to avoid the three more rounds of nausea and constipation and lack of taste buds and fatigue and worry about white cell counts and fevers.  I'd enjoy it if my hair maybe grew in a little thicker, though I am shamelessly accepting of my baldness (I forget about it often, yes, even in public.)  I'd love to know that I could spend the next ten weeks of summer doing something else, even if it's recovering from a surgery or two.  I would really love to have the strength to truly enjoy the summer with my kids and garden.

Wouldn't you?

So that's my fantasy: don't any of you actual nurses and oncologists burst my bubble on it okay?  That's what I'm going into the scanner thinking about Friday morning.

Fourth chemo treatment happens next Monday, June 1st.

How I didn't have a heart attack Wednesday night, and the case for small plates.

My friend Tricia is a nurse practitioner.  "Just like a doctor!" says Emme, who is enamored of all things Tricia.  Tricia and I have joke-stories about many things, but a favorite is one about my pain tolerance that goes back several years.

In spring 2003, when Luke was about 10 months, I woke up one night in intense pain, massive pain that seemed to be centered under my ribcage.  We'd all had colds, and somehow I decided that I must have pneumonia, that my ribs and lungs were clearly on fire with illness.  I spent some time trying to suck it up, then by six or seven in the morning was writhing on the floor in agony.  Of course, it was Sunday, no options for treatment except an ER.  I had Bob call Trish.

He explained the situation as he understood it from me.

"Yeah, Erin is in a lot of pain.  She thinks she might have pneumonia.  It hurts in her ribs."

Tricia: "What's she doing right now?"

Bob: "She's rolling on the floor moaning."

When Tricia tells the story she says that fact alone made her know something was REALLY serious.  She knew that I had done super fast childbirth with Luke, all natural, no pain meds, no anesthesia or epidural.  She knew that post childbirth I'd mostly shunned the vicoden and even ibuprofen they'd prescribed.  She did her magic symptoms evaluation and said quickly,

"Bob, it's her gall bladder.  She's the right age, she just had a baby, the pain is weird like that, but it's her gall bladder.  GO IMMEDIATELY to the Emergency Room, no fooling around."

When I did get to the hospital, after fooling around with driving myself while leaving Luke with Bob, they wouldn't let me leave.  Turned out I had acute pancreatitis as well as total gall bladder blockage, and they were actually concerned for my safety.  Can you imagine! I tried to explain about having a ten month old at home, but the doc insisted I stay, and I got booked into a bed and a sweet experience with all night nursing care and morphine drips.  Thank god Luke was already taking a bottle, and was mostly on solid food, so I didn't have to totally worry about weaning him!

I had laproscopic gall bladder surgery on Tuesday I think, and was walking the halls on Wednesday, finally home Thursday morning.

In retrospect I realize that I had signs that could have pointed me to the gall bladder issue: signs that I confused with heartburn because my pain threshold is pretty high.

So that's my joke with Tricia about my pain tolerance: "Remember that time you had pneumonia that made you roll on the floor in agony??" And we bust up laughing.

Wednesday Night

So, last night we had a spontaneous little evening with friends.  Lance and Katie and Lil' Jack and Katie's Mom all came out to the farm in the afternoon.  Lance helped me with some chicken chores: we got the chicken kindergarten cleaned up and mostly ready for the mamas-to-be (YES! I wore my new surgical face masks!).  Katie and her mom put together an amazing dinner from the food my Aunt Laurie had sent out to the farm for our dinner.  We all finally sat down to a great meal, juggling various cranky children of various ages, but really just enjoying the easy comfort we share with Lance and Katie.

And we had delicious green kale!! A yummy, yummy dish of kale, cooked to perfection with some caramelized onions.  It was a delicious counterpoint to to the red sauced organic tortellinis.  And then we finished out the meal with blueberry pie.  I had two helpings of kale, lots of tortellini, and definitely some pie.

The problems started after our guests left, about an hour after we'd finished dinner, while I was laying in bed with Jack to sing "cowboy song".

The Heart Attack

I got a big nasty pain under my diaphragm, just under my rib cage.  Then my face got really hot and flushed.  I figured I might just be in trouble.  I got Jack placated, then went downstairs for my new thermometer I bought just for chemo-induced fever emergencies.

I made Bob feel my forehead and then used the thermometer.  The thermometer said I was at 98.9.  So far so good, but I felt awful.  I drank some water.  I took an antacid.  I paced around.  I started thinking that my heart was beating irregularly.  I started thinking about who would know if I was having a heart attack or a blood clot from the surgery Monday.  I was pretty sure my left arm had a pain in it.  That's a sign of a heart attack right?  Or is it the right arm?  I tried to sit on the toilet.  I drank more water.

I seriously told Bob that he needed to know my current symptoms just in case I became unresponsive in the night.  I managed a belch and felt slightly better.  I took two more antacids and called Tricia with my latest medical emergency.

The case for small plates

Yeah, those of you who have done chemotherapy have already figured it out.  In fact, I broke a pretty basic rule of "feeling good" during treatments.  Small meals more frequently.  Somebody I'm sure has a catchy phrase or acronym for it, but the honest truth is that it's just a lot simpler to say than to actually do.

I love sitting down for dinner with friends, love long drawn out meals with good food and great conversation.  I am also horrible about making sure I get enough meals during the day--I am always one of those moms who feeds the kids but forgets to feed herself!  So this is actually a very real life-change challenge for me.  I need to reset my habits, I need to re-figure the hunger/nausea/full cues I may be getting, because they are seriously whacked right now.

So, Tricia's advice: Not a heart attack, not a blood clot, it's heartburn: have smaller more frequent meals.  Another good belch and I had to agree with her.

"Remember that time you had the heart attack that you cured with Tums?"  And we bust up laughing.

Surgery for port install tomorrow (Monday)

A quick procedure I am told, the surgery itself should only take about 45 minutes.

The "port" they will install is going to be my semi-permanent "line in" for future infusions and blood draws for the next year or so (which is about how long I'll probably continue on the Herceptin.)  It's a cool star trek type device that is about the size of a quarter and will be inserted just under the skin on my chest, probably a little to the outside of my right breast.  It lets them insert a special needle through my skin and through a self-sealing membrane into the port so that meds can be injected safely without blowing all the veins in my arms.  The port has a lead line into a big vein under the colar bone, which leads into the big "Vena cava" going directly to my heart.  (Go here for a cool illustration of a port (courtesy breastcancer.org-- warning, there are nipples in the picture, don't be shocked!)

I check in at 8am and hope to be home by 2pm at latest.  Figure most of the time will be waiting for me to come out of whatever anesthesia fog they send me into.

My friend Stacey is going to drive me to OHSU and bring me home, so Bob can finally get some lawyer work done (health insurance premiums are due this week!  How much fun is running your own business now??)  Kids will be in school all day, and I expect to be home to receive Luke, Mr. Independent, when he comes off the bus.  Depending on how I feel, I may call some of you girlfriends over so you can help me fold laundry and drink tea!

I am MUCH more tired today, and was too close to cranky-mommy this evening for my taste. I think I am nervous about tomorrow, knowing it is the next big step before I can breathe and just ride this out for a few weeks.

Best wishes to you all.  I thank your for your notes and continued positive thinking.  I can't reply to everyone individually, but do know I am receiving your love loud and clear.  It helps more than you can EVER imagine.

The brain is there...

All clear on the head MRI.

Dr Chui called and left a message last night: "thought you would want to know, everything looks fine.  We don't see anything in it--the brain is there-- but no cancer, nothing else for us to worry about."

So, the best news I've had from OHSU to date: no cancer on the brain.

What's on YOUR brain?

Tomorrow morning at 7am (Monday) I have a brain scan scheduled. 

Technically an MRI of my head.  It's at a different location on the OHSU campus than the last MRI I had, this down at the foot of the tram in the building that makes me feel like I'm checking into an expensive modern hotel.  I am also pleased that it's so early in the morning, because it makes me hopeful that I will actually be able to get in and out in a timely manner (can you be backed up on the schedule at 7am??  I sure hope not!)

Oh, why are they scanning my brain, you ask?  Actually it's my own smart mouth that got me into it.  Last Thursday when we met with my oncologist, Dr. Chui, after getting through the shock of all the bad news, I was trying to be flippant about what the upside to my metastatic cancer must be.

"Okay, so we know we've got breast cancer popping up in liver, lymph nodes, lungs and chest, but you did your fancy full body scan and we know it's NOT in my bones or my brain, right?"

Chui looks at me, narrowing his eyes, thinking, says "not in your bones... but you know, we haven't scanned your head...." pause.  "Yeah, that's a good idea, let's scan your head too."

I'm thinking... well you can imagine the cusswords I'm thinking at this point.  I roll my eyes: "Fantastic, great! Yeah, sure, now let's do a brain scan!!"

Chui gets serious, level gaze, slows his answer: "No, it really is a good idea.  You ARE going to get headaches, and we need a baseline to prove to you that there ISN'T cancer there.  It's a GOOD idea."

Like everything else thus far, I have to agree.

So tomorrow morning, early, and before the bright, I'll start my commute to Portland for the next installment of this adventure.

Emailed Cancer update: Metastatic (does not rhyme with "fantastic")

Dear Friends and Family,

 

(If this is the first you are hearing of Erin's cancer diagnosis, our apologies, it's been a chaotic month, and Bob and I have just overlooked emailing everyone we should.  The first emails I sent in the last few weeks are below this one, so if you want to go all the way to the bottom and read back to this point you can make better sense of what's been going on.)

 

Well, I hate to say it, but our latest news is seriously not fun to share.  We found out Wednesday afternoon that the breast cancer I have been diagnosed with is metastatic, which means it has already moved out into my body, my blood stream, and is popping up in other places.  I have cancer activity happening in the lymph nodes in my armpit, all through my chest, as well as inside my lungs, and in my liver. 

 

Let me back up and explain how we got to this, and then we'll get to what it means.

 

Last week, on Thursday the 12th, Bob and I met with our doctor team at OHSU.  We met the oncologist and the surgeon, and met with a genetics counselor.  I had been given an MRI on Tuesday the 10th to further examine the breast cancer tumor, and in that MRI they got images of part of my liver.  In the Thursday morning conference as they were going over my case, the conference team (about 30 doctors from different disciplines) decided that they didn't like the looks of a certain spot in the middle of the liver.  So, they asked me to go get a PET/CT scan.  I got the PET/CT scan this Tuesday, the 17th.

 

A PET/CT scan involves fasting your body for a day before the scan, in order to get your blood sugar nice and low before the scan.  Then you go in for the scan and they give you a glucose drink with a radioactive element in it, which you drink part of and then take a nap for an hour, after which they send you through a big scanning machine (much nicer than an MRI.)  The idea is that all the cells in our bodies need sugar (glucose) for energy, but some cells, like cancer cells who are overachievers and overeaters use a lot more of the glucose--so spiking the glucose with the radioactive stuff means that then they can scan my body for the radioactivity and see which locations have been eating the most glucose.  In a resting state the cancer is going to gobble the most.  So that's what happened, and "hotspots" turned up in a lot more places than anyone expected.

 

What this means is that my cancer is now my chronic disease.  They are not (currently!) able to cure me of it, because they do not know how to rid the entire body of potential cancer cells once they have begun spreading this way.  In localized breast cancer, where it is all still confined to breast and local lymph nodes they can do an amazing job, because they know how to combine chemo and surgery and radiation to make them feel they have gotten close to 100% of any potentially cancerous cells.  Clearly in my case you can't do that.  I need to keep my lungs and liver, no removal or radiation for them.

 

So, the plan?  Basically to kick butt and live as long and as well as possible. 

 

I start chemo in a week, on Friday the 27th.  Then next Monday on the 30th I'll have outpatient surgery to install my "port" which is a device in my chest that will allow them to give me my future chemo treatments through the port rather than constantly poking my arms for veins.  In total I'll have 6 rounds of chemo, each of them 3 weeks apart. I'll be taking two drugs during the chemo sessions: Taxotere and Herceptin.  The Herceptin I'll probably take for at least a year as it specifically targets HER-2 positive cancer cells which I have, the Taxotere will just be for these 6 chemo rounds.  We'll do another PET/CT scan sometime after the 2nd treatment to see how things are responding, and then another PET/CT scan after chemo ends to reassess the situation.  Then I'll have surgery.  They will remove a lot of the lymph nodes in my armpit to try and avoid some serious quality of life issues that could arise from having tumors develop in that area later on.  They'll remove the main tumor in my breast as a lumpectomy.  And they will also remove my ovaries.

 

The idea with the chemo is to try and kill off and knock down the cancer as much as possible.  Removing my ovaries is the beginning of endocrine therapy: the long term strategy for slowing future cancer growth.  Since we know my cancer is Estrogen positive, that means we know it responds to estrogen as a stimulant for growth--which means we need to remove as much estrogen from my system as possible.  Bye-bye ovaries.  After surgery I will be given either injections or a pill which will provide more estrogen blocking activity, and I will take that for the rest of my life,

 

And that's it.

 

So, life as Bob and I have known it has totally changed.  This is a most surreal time.  It is a shock, and it is difficult, and we are still trying to figure out what this all means.  We know we are incredibly lucky to have all of you in our corner.  You cannot imagine how sustaining your calls and messages have been in this most difficult of times.

 

We are really using the support team (go BRAS!!) that most all of you are a part of, and will be heavily leaning on them for all kinds of help with food and childcare, housecleaning and other crazy requests.  We'll have our sisters and out of town parents come out to help out during the chemo treatments and surgery recovery.  If things go as planned with chemo then the last treatment will be on Monday July 13th.  We've been told to expect that I will experience a cumulative fatigue that grows with each chemo session and which will take months to recover from after we finally end chemo.  Your friendship, your big hearts will be most appreciated this year.  Even if we are not using YOUR help immediately, please know that this will be a long road with many opportunities to help.

 

Oh, one other thing.  I do want to make it very clear to all of you that I am NOT interested in what my "survival statistics" are now.  No doctor has told me "how long I have" and I would probably slap them if they tried.  It is not useful information for me, and does nothing to clarify for me what I am up against.  I would also ask that you refrain from that kind of speculation as well, especially if anywhere near me or my children.  None of us knows how long we have to live in this world, and any of us could die in a car accident tomorrow--even a cancer patient.  I plan on living as long and as well as I can, causing Bob as many headaches as ever in my quest for new farm and home projects.  I plan to continue to be here for my kids and for all of you.  I love you all a ton.

 

To help keep you updated with what's going on I have started writing a blog.  It may be trite to add yet another blog to the blogo-sphere, but honestly I think it may be the most useful tool available for me to make sure you know what you want to know without me having to tell the stories a million times.  Apparently I can even link the blog to facebook somehow, and post blogs from my fancy new cell phone Bob got me.  Right now there's not much there besides the emails I've sent, but I am going to backfill some of the story of the last few weeks, and jot down the important words and images that are staying with me.  Most importantly, that will be the place where I will post future news and progress, rather than sending out emails.  I am finding it just too hard to keep track of email addresses, and fear that I am missing most of you each time I send one out.

 

The blog address is: http://erins.typepad.com/scenic_route/  Make sure you bookmark it.

 

Also, if you want to be a part of the support team that has been organized by my rock star girlfriends, aka BRAS support, please email your contact info to Kristen Hagen, BRAS database manager and organizer extraordinaire!  She will want your name, email address, phone number and any specifics about how you want to help.  They have standing committee chairpersons for the areas of childcare, transportation, food, errands, entertainment, and "bizarre requests erin comes up with".

 

As always, please feel free to forward this email to whoever I have missed, or whoever you think needs to see it.

 

Huge hugs to you,

 

Erin

The biopsy results

Dear Loved Ones,

 

Well.... not the news we wanted and prayed for, but now the opposition has a name.

 

I have been diagnosed with breast cancer.  Officially, it is "invasive ductile carcinoma", the most common form of breast cancer.  It is Stage 2.  For those of you being technical and who know what it means, it is also PR positive, ER positive, and HER-2 positive.

 

DON"T PANIC!  All highly treatable in this magnificent age of wonders.  Do not go crazy on your Google searches, all will be well.  This is just a really crazy diversion on the life path, and it will take time and help, but I will get through it.

 

My dears, you have all been amazing with your good wishes and prayers and notes and energy.  I am so happy I made the decision to share the news early, because it helped to have there be no secrets weighing on me, and your support continues to buoy me through this most difficult time.  I will continue to ask for your help in the months to come, Bob and the kids and I will definitely need your support.  And trust me, I will be quite willing for you to help me with specific things and tasks.

 

For the immediate future I have a lot of learning to do so I am ready to make my decisions in the next few weeks about what path I want treatment to take.  Bob and I will go in Monday afternoon to talk with the Comprehensive Care nurse at OHSU (I spoke with her on the phone two hours this afternoon) so she can explain to Bob everything she and I talked about today.  On Thursday morning the OHSU Comprehensive Breast Cancer team will meet to discuss my case in committee--that will be like 30 people from a myriad of disciplines.  On Thursday afternoon Bob and I will start meeting individually with my doctor team, knowing that they have all talked to each other about me just that morning.  They will give me recommendations on treatment and answer questions.

 

I may also seek an outside opinion on treatment from the Breast Cancer center at St Vincent's, just so that I can see what another perspective might be, and what another center "feels" like.  Those of you who are doctors and nurses, or are partnered with one, feel free to send me your opinions about where to look and what to look for.  We are blessed with some pretty good health insurance so I am able to choose.  I will say that I am amazed so far at the quality of attention and care I have so far received from OHSU, so am leaning that direction already.

 

Some of you have asked about how will we tell the kids, and for now we will do it has we have done everything else with them, we will tell the truth and be very open, but only ever giving them the amount of information that they need and can handle.  There will be no talk of death and dying, because that's not happening now anymore than it was before.  Mostly we'll have to some explaining about doctors appointments and surgery and chemo and whatever else comes down the road, AS it comes down the road.

 

Meanwhile, I feel really positive, and honestly feel relieved to know what I am facing.  And, it's not just platitudes, I really really value your love and support.  Realizing what a loving and huge circle of friends and family we have has offset the shock of the news.  Again, feel free to pass this message on to those who I have missed in the sending, and/or who you feel need to know.  After the kids go to bed tonight I'll break the news to my facebook posse, so it'll be totally public.

 

I'll keep you posted about what help I'll be needing as we figure that out.

 

PS: For the Girls of Girl's Game Night, let me inform you right now that it is totally ON, and you are crazy if you think I am going to cancel it!!  No excuses, we're doing game nights as scheduled!  SO there!

 

All my love to you,

 

Erin