Monday, August 24, 2015

Legendary

How can it be that summer is over and today is the first day of school?  Summer went by too quickly, and I have not properly documented my comings and goings.  That's because I've been out living instead of in blogging.  I have begun many stories, and I hope to finish them and post them in the coming days.

Today's story is going to cover several things that happened in the month of July.  At the beginning of the month was my hiking trip in the Olympic Mountains.  It was every bit as incredible as I imagined it would be!  Walking in the woods was a restorative activity after a somewhat stressful year of recovery.  Taking one step at a time, over logs, under logs, and around logs, helped me truly realize just how strong I am.  In addition to the physical achievement of hiking 10 miles per day for 3 days, I had the personal satisfaction of getting away from the routines for awhile.  I forgot how unscheduled a couple of grown-ups could be for a couple of days, and it was rejuvenating.  Plus, my brother was a wonderful host, guide, and companion.  He cracks me up.

A few days after I returned to the office from my backpacking trip, I got a phone call from the Big Boss (my boss's boss's boss in the district office).  He was calling to congratulate me because I won a really big award!  I am an Early Career Scientist award-winner for 2015.  I get to go to Washington D.C. in September to receive the award.  Woo hoo!  I'm so excited!  All sorts of loved ones are going to accompany me to D.C.:  my daughters, dad, stepmom, grandparents, and mother-in-law.  What on earth am I going to wear?  Don't make me buy a pantsuit!!

I was beginning to feel rather legendary when two weeks later I found myself once again in that dark little room, meditating with my yellow paintbrushes while the radioactive glucose worked its way around my cells.  This time I got my PET scan results on the same day as the scan, and guess what?  All clear again!  Boom!  The legend continues!  That's the third clean PET scan in a row, friends.  Well, in the interest of full disclosure, the current PET scan did show a tiny bit of activity on one ovary, but a follow-up ultrasound revealed that there is nothing abnormal going on. So again I say, clear PET scan!  Huzzah!

Two weeks ago, in August, I had a 6-month follow-up with Dr. Medical Oncologist at the other cancer center.  This is my Her2-cancer expert.  She couldn't have been more thrilled with the PET scan results (in fact, I daresay she had a look of disbelief on her face).  I asked if we could stretch out the PET scans a bit, now that I've had 3 clean ones, and she said yes but just a bit.  Her proposed PET scan schedule is every 4-5 months.  Ugh, that's still awfully frequent scanning, but I'll take it.  It'll be 3 PET scans a year instead of 4, which I suppose will make a big difference in terms of my schedule and exposure to radioactivity.  She also still plans to keep me on the Herceptin and Pertuzumab treatments indefinitely, as previously planned, as long as my heart holds up.  I get echo cardiograms of my heart every 3 months to make sure it's not being adversely affected by the treatments.  Again, I'll take it.  Finally, she mentioned that if these drugs ever stop working for me, there are already new treatment options available for Her2 cancers.  Wow!  That's incredible!  I hope I don't have to explore those options for a long, long time, but it's nice to know that they are there.

Two days ago, on Aug. 22, was my one year anniversary since my last hard chemo.  I can't believe that it's been a year already.  Time flies when you're feeling well, I guess.  I am so grateful to have had this year, and I feel ready to snag another one.  Dr. Medical Oncologist said that when I make it to my 10-year survivorship, she can retire.  Thanks for giving me a new survivorship goal, Dr. MO.  Here's to sending you into early retirement!  

Monday, June 22, 2015

Walkin'

I never did figure out the correct pronunciation for Wernigerode.  "Vern-i-grot-en"?  "Vern-e-ger-te?"  "Vern-e-grot-e?"  It was a beautiful and historic town in the Harz mountains in the former East Germany.  The cab ride from the Hannover airport was a harrowing 1.5 hours, including a speedy jaunt on the autobahn.  Despite my lurking carsickness, I was able to appreciate that the German countryside in May was spectacular.  The brilliant green and yellow fields unfolded around every bend until finally the rooftops of Wernigerode appeared.

Overlooking Wernigerode, seeming to jut out of the mountainside, was an enormous 900-year-old castle.  I couldn't see the castle from my hotel room, but I could feel its presence.  On the first night of the conference everyone was escorted up to the castle courtyard for a reception at sunset.  The route wound down narrow cobblestone streets of shops and residences, through the city center, then up a wide switchback to the castle gates.  At the top, the path opened into a garden the size of a baseball field, with a discrete fountain in the middle and surrounded by a low wall and several turrets.  From the garden we climbed a broad spiral staircase up into the castle courtyard, which featured flowering plants and frightening gargoyles.  

We didn't tour the castle that night, but I was enchanted by it nonetheless.  The conference was very busy and full of interesting and new topics to learn and people to meet.  It was also full of sitting. Additionally, the fact that hiking up to it was perfect training for my upcoming Olympic National Park hike was not lost on me.  Therefore on that first night, I made it my goal to walk up to the castle every day of the conference. 

Perhaps the best things about my daily castle hike were the friends I made.  Every day, I invited other conference attendees who happened to be near me when I decided to walk, and a few of them accepted my invitation.  R was so into walking that we walked extra distances and discovered a free zoo and a hiking trail into the forest.  F joined us on another day and delighted me with plans for her upcoming Irish cycling vacation.  It was a delightful break from the conference, and hopefully decent training for my upcoming walk in the woods. 

Photos from my trip (I apologize for not taking the time to paste them in here, but doing it this way saved me an extra download-upload step):

Wednesday, May 27, 2015

Heather's big climb redoux

I don't know how this happens, this passage of time between blog posts.  I've thought of about a hundred things to write about, but I haven't taken the time to write any of them.  The main reason is that my primary blogging time occurs after the kids are in bed, but lately I've been stealing that time for exercising.  I think it's a worthy substitute under any circumstance, but particularly since I'm training for something.

I'm pretty sure that this is the first physical goal that I've ever had in my entire life, and it's a good one if I do say so myself.  At the end of June, the spouse and I are taking a trip WITHOUT THE KIDS (they'll be at grandpa and grandma's, so don't feel too badly for them) for the first time ever to go and do this:  Hike the enchanted valley in Olympic National Park!

http://www.wta.org/go-hiking/hikes/enchanted-valley



I am so freaking excited!  I've been craving a mountainous adventure ever since my brother's friend made me this last summer:


So I'm doing it!  I'm going on a big ol' hike in the Olympic Mountains!!

I asked my brother how to train for such a thing, and his response was one word:  Stairs.  I said how many, he said just do a lot.  I said how often, he said whenever you can.  So, I've been walking around this flat town a couple times a week, wearing a backpack filled with old textbooks, and incorporating at least a few minutes of stairs down into the floodplain that is a city park.  It'll do, it'll do.

I've been up to other adventures, too, but I think that they are worthy of their own posts eventually.  Some have been quite poignant and moving for me. I'll find the time to write them up, I swear.  One quick point I can make is that it is clear that my hemoglobin is at long last in the normal range for a healthy human being.  PSA:  Please don't take for granted how fabulous you feel.  Thank your hemoglobin.  It was not until I started feeling so fabulous that I realized how tired I had been for so long.  Every day I feel more and more fabulous.  Fabulous.        

In other news, I'm pretty sure that I forgot to post the news that my PET scan last month was TOTALLY CLEAR again.  That's two clear ones in a row, huzzah!!!!  Not sure yet if I get a longer leash in terms of extending the time between PET scans.  Dr. Oncologist would prefer to have a longer leash and therefore fewer PET scans, but I need to consult with Dr. Medical Oncologist (Her2 expert) and get her opinion.  I'll have that appointment in July or so.  

In the meantime, happy hiking, everyone!

Friday, April 17, 2015

Am I? Can I?

I found myself at the Oncology clinic every day this week for iron infusions.  This is because my hemoglobin and iron were dreadfully low at my chemo appointment on Monday.  Dr. Oncologist said that I'd lost two units of blood since she'd last seen me!  Well, I knew exactly where it had gone, and suffice it to say that my ovaries are on some continuum of healing but are currently behaving like those of a 50-year-old woman.  We don't yet have a plan for how to deal with that, and I probably won't discuss it further on the blog, but the significant point is that I am periodically weak and bloodless.

Dr. Oncologist ordered iron infusions into my port to get me fixed up as quickly as possible.  They were a piece of cake, only 30 minutes each day for 5 days, and the only side effects were dreadful headaches on each of the first three days.  By Wednesday I had more spring in my step and was feeling better.  However, I was surprised by how much they disrupted my mental game.

I have become accustomed to only having an appointment every three weeks.  It has been glorious.  I have picked up every thread of my life, I think.  I'm still behind on some science things and some house things, but I'm working hard on everything and having so much fun doing it.  Receiving treatment once every three weeks is a sustainable frequency that allows me the freedom to live my life while still being responsible to my disease.

Going to Oncology every day messed with my head for numerous reasons.  Reason 1:  It is disruptive to my other lives.  In my science life, I am having a hard time keeping up with my bank of paid leave that I can use for medical appointments.  I'm using it faster than I accrue it.  In my mom life, Eleanor was home sick a few days this week, so I had to call on a friend (D you rock my world!) to sit with her so that I could go get my treatments.  The coordination kinda stressed me out.  

Reason 2:  The waiting room.  Oh, the oncology waiting room.  I have blogged about the waiting room before.  Sometimes I overhear endearing conversations among old folks, and other times I learn life lessons from new friends.  This week, however, I struggled to find inspiration in the waiting room.  Everyone seemed particularly glum, bald, and phlemy.  Dr. Oncologist has told me that she avoids the waiting room, and now I understand why.

On Wednesday I sat somewhat in the middle of three men who seemed to be together.  The two nearest to me were talking the cancer talk, trying to one-up each other with the procedures they'd undergone.  "Drug X?  Oh, that was nothing!  You don't know pain until you've had your Y biopsied.  I tell you what, that's the worst I've been through!"  When they both paused for air, the third man tried to change the subject.  "Did you see that article about the Keystone pipeline and politics?  He's for it, she's against it, and I just don't know what I think."  The other two men did no more than blink at him before resuming their cancer conversation.  "I was an electrician, union man.  I retired 5 years early, and boy am I glad I did because I got this cancer diagnosis the year I was supposed to retire.  Glad I got to have a few years of fun before I go!"  Oh man, they couldn't call my name fast enough that day.

Because I'm not one of them, right?  I mean I am, and I was, but I'm not?  Not now?

And if I am one of them, should I be doing all of these other things?  CAN I do all of these other things?  Maybe I can't actually do these other things but I think I can?  The imposter syndrome meets stage 4 breast cancer.    

I am actually no more or less mortal than the rest of you all, I just spend more time thinking about it than you do.  Average folks probably think about them once every five years or so, when they get rear-ended or have a bout of high blood pressure.  My experiences in the oncology waiting and treatment rooms bring these thoughts to the surface all the time, whether I'm ready for them or not.  For my part, I acknowledge that they are a part of me while trying to think about them less often.  However, I have a PET scan next Friday (4/24), so I don't anticipate any mental breaks in the near future.

In the meantime I'm going to polish a 5-year research proposal, submit a grant proposal, and finish a manuscript.  I'm going to buy some paint and rearrange some furniture.  I'm going to keep working on the bike-riding and shoe-tying lessons.  I'm going to discuss books with friends.  I'm going to go to the movies with my husband and eat a ton of popcorn.  I suppose that I am, and I can, until someone tells me otherwise.  One day at a time?  Ignorance is bliss?  Just do it?  Something like that.  
       

Tuesday, March 17, 2015

100 Miles to Nowhere recap

I haven't spent much time on Blogger lately, so when I logged in last night to write a post I was surprised to see that my friend Smithers had written a post about her 100 Miles of Nowhere (MoN) charity event for my family.  Further exploration revealed that there are at least three posts about 100 MoN, complete with photos of EVERY mile that was sponsored by someone.  I had never seen most of these photos before!  I now get to see who showed support and their specific messages!  I am deeply touched.  Follow the links below to read about every moment of 100 MoN.

The blissful morning ride

The inner darkness of the afternoon ride

The ride that never ends

The novelty check at the end

Monday, March 16, 2015

Dear Calvin

Dear Calvin,

Happy birthday!  I hope that you had a wonderful time at your birthday party last weekend!  It was so much fun to see you toddling all over the place and babbling about everything.  You, as always, were the life of the party, but not in the usual way that that expression is meant.  You were the life of the party with your chill demeanor and delightful personality.  You had smiles for everyone.  You do not yet know the meaning of "stranger danger".

Your mom made you your own cake with gobs of blue frosting.  She took off your handsome birthday shirt and put you in the high chair, left to explore the sweet wonder of having an entire cake all to yourself on your first birthday.  You were tentative at first, not knowing what to do with either the cake or with the 30 pairs of eyes smiling at you expectantly.  But once that first tiny finger planted a dab of blue frosting on your tongue, you dug in with both hands.  You made a complete mess of the cake and of yourself.  Who's idea was the blue frosting, anyway?  A generous glob of it remained in your left nostril an hour after you'd been cleaned up.  So precious.

Your birthday reminded me that it has been a year since I started this round of cancer treatment, which will now carry on indefinitely.  How naive I was to think that my cancer book was concluded!  How surprised I was to begin a new cancer chapter!  How secure I had been in my cancer-free existence!

In some ways it is surprising to me that it has been a year, but in other ways it is not.  It seems like a lifetime ago that I had a breast, hair in a ponytail, and the "this is how it works when you used to have cancer" attitude.  Conversely, it seems like only yesterday I was nauseous, yesterday Aunt Jacque cleaned my room, yesterday I had a PICC line, yesterday Lori rubbed my feet, yesterday I couldn't wait to get out of the hospital, yesterday I was using your stroller as a walker to support my walk around the block.  Cancer treatment seems like a parallel life that I recently, somewhat briefly, lived and survived. Scarcely related to the life that I'm trying to lead now.

The other night I went on a walk all by myself, which is something I rarely do.  I found myself walking part of the route that we used to shuffle along.  I paused on the corner that we often had to pause at to give me a little rest before making the return journey home.  I remember the first time you sat in the forward-facing stroller instead of being perched atop in your carseat.  You were so quiet, such a quiet little baby, but your legs just wouldn't stop kicking.  You were so excited to be facing the world head-on.  It must have been quite a different perspective for you, rather than watching the sky and leaves pass overhead from your bucket seat.  You were kicking so hard I remember stopping to make sure that you were securely buckled; your mom and I were afraid that you were going to kick right out of that stroller with your excitement.  Thanks for being my cancer-kicking buddy.

Spring is starting to show its pretty face around here.  Soon the crocuses will be up.  They are my favorite springtime flower.  Let's go for a walk again soon, okay, and look for some crocus flowers?  This time we can walk together because neither of us needs the stroller anymore.  I miss our walks.

I love you, Calvin!  Happy birthday!  

Love always,
xoxoxoxoxo
Aunt Heather
    

Monday, February 9, 2015

Optimistic

Today my dad and I made another trip to the other town to visit my other oncologists.  The driving conditions were perfect:  clear roads and overcast sky.  The highlight of the road trip entertainment was the electronic over-the-road sign that broadcasts traffic updates.  Today it read, "Hey bobblehead stop looking at your phone."  We crossed the state and passed under at least three of these electronic signs, all of which said the same thing.  That guy or gal has too much fun.

The purpose of this trip was to deliver disks of my recent PET scan and to get their opinions on my continued treatment plan.  We first saw Dr. Medical Oncologist.  She was thrilled with the clean PET scan result and agreed that it couldn't have been better.  She thinks that I should continue to have PET scans every 3-4 months for now, and that I should see her again in 6 months.  She also maintains that I should continue the Herceptin+Pertuzumab treatments indefinitely.  I asked her about side effects on my heart, or what we should do if my body decides to reject this treatment, and she said that it would have to be pretty bad to get her to quit the treatment.  Her2+ cancers (that's mine!) are nasty, so it's better to suffer a bit of heart damage than to risk the potential consequences of ceasing the treatment.

That led me to a question about prognosis.  A few people at work have asked me about it, and I haven't known what to tell them.  My prognosis is technically "poor" because the best evidence suggests that I had (have?) stage 4 cancer.  That's cancer that has spread past its original source into an incurable location.  My question for her, then, is whether I should tell people that my prognosis is poor even though I am clearly doing so well and have unproven metastatic lung cancer that has nearly gone away? (I'll discuss the "nearly" part next.)  She then looked me in the eye and asked if I wanted her answer based on the previous data, or if I would settle for the word "optimistic".  The reason for this cryptic response is because I am on a therapy that has only existed for a year, and I have been on this therapy for its entire existence.  There are no previous data points on which to draw that would answer my prognosis question.  The previous data points didn't have the awesome treatment that I'm on.  Therefore, her expectation and her hope is that I will do better than what the available data would suggest for me.  I am the new data point.  I therefore opted to decline the technical answer to my prognosis question and accepted the word optimistic.  It suits me better, anyway.

Then dad and I took an intermission to inhale our lunch at our favorite falafel joint in the universe.  Oh man was it good, but we ate way too fast.

We scurried back to the clinic to meet with Dr. Pulmonary Oncologist.  This ended up being every minute worth the drive and the wait!  He pulled up images of my chest CT from last February and from the recent scan.  The chest CT is always taken at the same time as the PET scan.  The difference between the two types of images is that the PET is colored based on the radioactivity that my cells take up, but the chest CT is more like a standard x-ray.  So although the PET scan showed completely normal cellular activity, Dr. Pulmonary Oncologist scrutinized the CT images for abnormalities, which he found and showed to me.  He put my pre-chemo chest CT on the left, then my January 2015 chest CT on the right.  He had used the glowing data from the PET scan to find the suspected cancer nodules on the old chest CT.  Then he found the matching image on the recent chest CT.  What he pointed out to me is that when you look at the two CTs side by side, you can still see a trace of each nodule.  He said that they are less than 90% of what they were and that the extent of their diminution is better than expected.  He said that without a biopsy it is still impossible to concluded whether or not they were or are cancer--they could be cancer that has responded to treatment, or they could be my body healing a lung infection or scar tissue from an infection.  No matter what, the news remains excellent.  He said he doesn't need to see me again unless the pendulum swings back in the other direction; that is, unless the nodules show activity on the PET scan or start to grow again.

I also gave him my email address, because his son is an undergraduate interested in veterinary medicine and gut bacterial communities.  I study gut bacterial communities, I have a veterinary pathologist postdoctoral fellow starting in my lab in March, and I have a job opening for a summer student.  Small world.

It was another great trip with a whole pile of good news.  I hope I can stay on this trajectory for a long while.