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.  

   

Wednesday, January 28, 2015

Gone

This post would be better if I had properly set it up with a post a few days ago to let you know that I had a PET scan this week.  Unfortunately blog time has not been in the cards lately, so you won't get to ride the PET train with me.  That's a good thing for you.  You'll get nervous and relieved all in one sitting.  I, on the other hand, have been a basket case for at least 3 three days now.  That ends now.  Or maybe tomorrow.  I'm still reeling a bit myself.

My PET scan was scheduled for 8:00 Monday morning, with a results appointment scheduled for the same day at 11:15.  My awesome mother-in-law took the girls to school and was going to take me out to breakfast between the appointments.  However, there was no time to kill, because there was no PET scan.  They bumped my appointment to Tuesday, but they forgot to leave or send me a message to that effect.  Ooo I was so frustrated, and I told them that.  You can't mess with someone's head like that!  There's a lot of mental preparation you go through to get your game face on for a PET scan, and now I had to pause the game.  Ack!  But I'll forgive them because in the scheme of things it was no big deal.  

Needless to say, my MIL and I went out to breakfast anyway.  I had a short stack of comfort carbs, and I let almost the entire globe of butter melt into the stack.  PET scan scheduling people can suck it.

Tuesday, 8:00, new game face.  My favorite PET scan technician was working, so we caught up on things:  did Kathy have her baby?  How was your Christmas?  Oh, and when did you last eat something?  She injected me with the radioactive glucose, then I laid in the cosy dark room for an hour.  I brought back my yellow paintbrushes from my last PET scan and meditated on how healthy I feel.  I tried to bring that down to the cellular level, to align my cells with my healthy mo-jo.  Unfortunately I was terribly distracted with other Life thoughts and did a terrible job of meditating, but at least I tried.  It's always good to try.  After my hour-long incubation I was slid in and out of the tube a few times, then I went on my radioactive way.

Today I walked the kids to school.  The temperature was supposed to get up into the 60's, so we thought that it would be a good day to walk.  It was on the chilly side of brisk for our walk, but the kids didn't seem to mind.  It was a great way for me to start the day.

My MIL, uncle, sister, and baby Calvin (the Cure; he's 10 months old now! mobile, but as chill as ever) joined me for my PET-scan-results appointment.  Yes, they all crammed into the exam room with me.  When Dr. Oncologist came in I introduced her to my entourage while she pulled up pictures of my scan.  She had quite the poker face on and it was hard to tell which way the appointment was going to go.

I wish I could remember the first words she used to tell me the results.  I don't remember them, because I couldn't comprehend them, because they didn't make sense, because they weren't what I was expecting.  Her first words, therefore, must have been something like, "There's nothing," or "It's gone."

Because there is nothing in my lungs.  The cancer is all gone.  From everywhere.

She scrolled through the images of my ridiculously amazing cancer-fighting body, and it was the cleanest PET scan of myself that I've ever seen.  My lungs were completely black, as were my bones, brain, and other important parts.  Black is the best color on a PET scan.  I watched her scroll up and down, up and down, with my in-person mouth gaping and tears streaming, gawking at my image-person.  I just couldn't believe it was all gone.  My optimism had led me to the conclusion that the innumerable pulmonary nodules would be the same or smaller, but "gone" never once crossed my mind.  Not once.  I didn't even know that was an option.

Apparently I need to create a new option.  

All day I have been trying to wrap my head around this news, because clearly this is a game-changer.  Where I hesitated to make plans, I can make plans.  Wow.  I can't decide if I want to laugh or cry, jump or crumple, run or crawl, sing or weep.  I think I'll do a little of all of it.  I have that same full-in-the-chest feeling that I had when I was diagnosed just under a year ago.  It's the type of feeling that makes you want to make a really loud noise for a really long time.  I guess I've come full-circle, then, by ending the the same feelings that I started with.      

Cancer, this is my year, not yours.  You can't catch me; I'm the hbomb.    

Tuesday, January 6, 2015

The last goodbye

With conviction I called my dad last night to cancel our trip to see Dr. Surgical Oncologist today.  The first snowstorm of the season struck yesterday afternoon and evening.  Area schools were delaying morning classes, and so it seemed like the rational choice to avoid the extra driving by rescheduling my appointment with Dr. Surgical Oncologist.  My dad, however, had a different opinion.  He was confident that the roads would be better by morning, and that we'd be fine in his extended-cab, 4-wheel drive Ford F-150.  I deferred to his expertise and driving abilities in favor of keeping the appointment.  

He picked me up just after 8am.  I tossed my snowpants in the cab just in case we had to hike out of a snow-filled ditch.  Once we hit the interstate he disclosed that the southbound traffic had been plugged up earlier, but hopefully it's cleared now?  Between this question and the thick layer of snow beneath the tread, I began to question our decision.  Fortunately my 511 road-condition app revealed that traffic was indeed flowing up ahead and that road conditions were improving by the minute.  Indeed, by the time I closed the app the packed snow had given way to pavement.  I breathed a sigh of relief and settled in for another pleasant drive with my dad.  

Dad has been my chauffeur to all of my distant appointments this entire Cancer year.  He has been gamefully unemployed approximately since my diagnosis, which I selfishly admit has been glorious.  I don't think he's missed a single distant appointment.  He packs snacks for the car ride.  In the exam room, he remembers to ask the questions that I forget to ask.  He asks me things the doctors and I forget to think about.  He thanks the doctors and nurses while I'm still reeling from whatever news has been delivered.  After the appointment, we do lunch, and we've discovered some delicious food.  Sometimes we get a chocolate shake, if it's been that kind of appointment.  Usually we just hit the road.  He makes me laugh.  

It's fitting that just as my Cancer year is winding down, Dad has found a new job.  He starts on Monday.  Congratulations, dad!  I'm glad you have an exciting new job, and I'm so glad that I have fewer appointments, but maybe we can keep the regular lunch dates?  I'm going to miss them.  <3

Today's appointment with Dr. Surgical Oncologist was a simple surgical follow-up.  Everything is still healing well.  I took this opportunity to describe my only concern, which is that when my right arm is at my side I have a sensation that there is something wedged under there.  You know how it is when you wear a shirt with too-small armholes, and the sleeve hikes up and gets bunched in your armpit?  It feels like that, all the time.  This led to my concern, which was not about the sensation itself, but perhaps I was having swelling that was causing the sensation?  She checked me out and determined that I do not have swelling (huzzah!).  She also said that although the surgical team tried to avoid damage to major nerves, microscopic nerves were certainly damaged.  She has had other patients complain of this full-armpit sensation, and she thinks that it's due to damage to these microscopic nerves.  She expects that the sensation will go away with time.  

Then the appointment turned a sad corner.  As long as I stay healthy for the next eight months, this is the last time that I will see Dr. Surgical Oncologist.  She is retiring in October, but now I only need yearly check-ups at the clinic's survivorship center.  I suppose even if she weren't retiring I would probably be graduating to the survivorship clinic and out of her purview since I no longer bear the subjects of her profession--she is a breast surgeon, after all.  Although I am sad to know that I will have to find a new surgeon should the occasion arise, I am truly happy for her at her retirement.  I am grateful to have been her patient and to have benefitted from her expertise.  I hope that she will do everything that she enjoys.  

We parted with a hug, then another hug.  There was so much I wanted to say that I couldn't say any of it.  I thanked myself for sending her a thank-you note in November and I hoped that I had said everything in that.  There's no way to fully convey my sentiments, and yet they can be summarized in eight words or less.  Thank you, Dr. Surgical Oncologist, for my life.                      

Sunday, November 23, 2014

Notes

It's a perfect time to write some thank-you notes. The girls are at a mindfulness for children yoga class (thank you, 100 miles to nowhere, for making that possible!), so I found a spot at a nearby coffee shop. I only wish I had more time. It's going by too quickly. Always does. Hope you are enjoying your Sunday! 

Tuesday, November 18, 2014

Closing the gap

I've started using conditioner in my hair again.  It still seems too short to necessitate conditioning, but it is frizzy, post-chemo hair that could use assistance in settling down.  So, condition I must.  It is rather exciting to be using conditioner again.  I have to consciously remind myself to condition after shampooing because it has been over 6 months since I last conditioned.  In the first few weeks after my hair fell out, I wasted probably a half-bottle of conditioner, measured out in quarter-sized dollops during every shower.  I would squirt the conditioner in my hand only to realize that there was no point in conditioning my scalp, then wash it down the drain.  It was terribly hard to break the habit of conditioning.  I'm finding that it is much easier to re-discover the conditioning step than it was to lose it.

In other hair developments, today was the first day that I went all day without a head covering.  I am not ashamed of my short hair, but I do get quite chilly when that is the only barrier between my head and either the outdoor elements or my chilly office.  My thin layer of hair is at last thick enough to provide some protection.  Also, I've discovered that if I keep my neck covered, such as with a scarf or collared shirt, I retain enough heat to support my hair freedom.

Also, my eyebrows are about halfway returned to normal.  This is probably the most exciting hair growth development because my face now looks more familiar to me.  My eyebrowless face always looked strange to me, not to mention pale and sickly.  My eyebrow hair is now long enough to provide some color, shape, and versatility of expression.  How exciting, she said with eyebrows raised for emphasis!  

I've been thinking a lot lately about what I could blog about, and aside from hair growth not much came to mind.  This surprised me because I would have expected myself to have all sorts of things to share, process, or at the very least document about recovering from a second episode of breast cancer treatment.  This has not been the case.

The first time I recovered from cancer treatment I felt much more emotional.  I had fear and apprehension about so many unknowns, namely what recovery would be like, how long it would take, and if my cancer would come back.  This time, the fear is gone.  I know the answers to all of my previous questions (tiring but glorious, several months, and yes).  I don't want to give cancer any more of my attention than I have to, which is plenty of attention every third Friday for my Herceptin + Pertuzumab treatments.  Instead I am trying to pick up my non-cancer life where I left it 8 months ago, closing the cancer-life gap as if it doesn't exist.  When I'm not in treatment I have largely given cancer the middle finger, both middle fingers, and stormed back into my life.

For better or worse I have not taken much time for reflection on my experience, except for a handful of great walks in the woods and yoga sessions.  It seems that it would be good for me to take some more time for reflection.  My plan to force some reflection is to require myself to finish my cancer thank-you notes by the end of November.  It is the month of Thanksgiving, after all, so it seems like an appropriate goal.  I know that no one is expecting a thank-you note, and that I probably will have missed a lot of people who deserve a thank you note, but I'm going to do my best and it will be from my heart and it will feel good.

In the meantime, cancer can eat my dust.  I hope it chokes on it.          

Tuesday, October 28, 2014

Symmetry

My scar is pretty much sealed up now, with only about an inch of a deep scab remaining to fall off.  The itching has transitioned from obtrusive rashes to a healing twinges.  I have resumed my weekly yoga class, and I already have better range of motion in my right arm (surgified 7 weeks ago) than my left arm (surgified and irradiated 3.5 years ago).  I daresay I'm healed.  Efforts to improve strength and energy will now be the focus of my meditations.  

Being physically healed has cleared the way for the next phase of healing, and that is the mental healing.  Interestingly, adjusting to my breastless state has been much quicker and easier than my previous adjustment to having a single breast.  I think that there are at least two reasons for this.  First of all, I'm experienced in dealing with the emotional trauma that comes with losing a body part.  Going through that loss a second time has been much less traumatic.  Secondly, adjusting to my new body shape this time around is much less complicated than it was the first time.  This has to do with the issue of symmetry.  I spent a lot of time struggling with asymmetry after the first surgery, both psychologically and when shopping for clothes.  The second mastectomy has returned me to a symmetric state, which I find suits my self-image.  Perhaps I look oddly flat-chested to other people, but to me, I'm symmetric with no breast cancer.   That look suits me.    

Throughout this first phase of healing it has been important to wear loose clothing that doesn't constrict or pinch any parts of me.  We want to ensure that the blood can flow to and lymph can drain from the sites of healing.  Now that I'm past the itching and swelling, I can explore my options for undergarments.  Clearly I don't need a bra, but some sort of torso-covering undergarment provides both warmth and comfort.  

My friend J recently sent me an article about breast cancer survivors who started businesses to help fellow cancer patients and survivors, and one of the businesses sells appealing undergarments to women whose chests have been modified by cancer treatment.  There probably was a time when I would have thought this sort of thing unnecessary ("Why not just wear camisoles? They are cheaper and cover more area," I may have said), but now that I am in this situation I am excited to have found someone who is actively creating a resource for people like me.  Perhaps with a bit more shopping I'll decide that I don't actually need something necessarily bra-like, but a person does like to have options.

Speaking of options, I still have the prosthesis that I received after my first surgery.  I think it's under my bed or something.  I only wore it a handful of times.  Soon I will be sufficiently healed to get a prosthesis for the other side, and then I will have yet another option for optimizing symmetry and self-image.  

Finally, on a lighter note, guess who surprised me for my birthday on Friday?  
Surprise!  Happy birthday to me!  Look how symmetric we are--there are two of each!
All of my beautiful siblings!  Even Ryan, who flew in from Seattle for the surprise.  I have the best family ever.  I love you guys.

Tuesday, October 21, 2014

A week-long celebration

My friends.  Oh my, my friends.  How I treasure you.

Bike World, the corporate sponsor of 100 miles to nowhere set up a tent in my yard.  Photo by Kathryn Corones  
 On Saturday, two of my friends rode their bikes 104 miles around and around my block.  They intended to ride 100 miles, but rewarded pledges of $200 or more with an extra mile.  My mom was one of those extra-mile donors, but her donation was electronically received right after the bikes were shed following the 103rd mile.  Woops!  My friends got back on their bikes and dutifully rode one more mile.  And look at those smiles!
The queens of going nowhere (among other achievements):  "Norman" (left) and "Panda"
My dad joined them for a casual 84 miles.  
Nothing casual about this guy.  He proceeded to run a half-marathon on Sunday.  Love you, Irondad!
Several other friends, neighbors, and family also rode for various miles.  Ian and the girls probably logged nearly 10 miles, and I pedaled for a mile or two myself.
photo by Kathryn Corones

It was the most beautiful day.  Panda has some more details about it on her blog.  One of the things she said is true for me, too, and that is, "I feel like I didn't have the mental ability or energy to truly thank everyone that came to support."  I felt that way, too, and I wasn't even biking!  I tend to feel overwhelmed as the frequent recipient of the outpouring of generosity and support.  During 100 miles to nowhere, much like during the Huzzah party in June, I found myself trying to enjoy it a bit anonymously, as if I were attending a festival or event that was for someone else or everyone.  The good thing about the anonymous feeling is that being overwhelmed did not spoil my ability to have fun.  The bad thing is that I did not properly exhibit the humility or gratitude that continues to fill my heart.  I had a wonderful day at 100 miles to nowhere, and I won't soon forget it.  Thank you, friends, for doing this for me and my family.  Also, thank you, Carnation Nation, for being such a large and powerful place.  Thank you for being a part of my life.

Saturday was the beginning of this awesome week that is my celebration of life.  My life, which I happily continue to inhabit.  It has once again been proclaimed by the governor that this week is Inflammatory Breast Cancer (IBC) Awareness week.  I'd like to remind everyone that the signs of IBC are different than other types of breast cancer that commonly present as a lump.  IBC often has NO LUMP.  IBC can turn up as itchiness, redness, or firmness that feels like inflammation, or all of these things.  For more information please see www.eraseibc.org.  When in doubt, rule it out!  (If you'd like to buy our T-shirt that says just that, please email me at 30carnations(at)gmail(dot)com.)

Finally, this week will end with my birthday!  I will be 34 on Friday.  I can't wait.  I have always loved my birthday, but I will be particularly happy to celebrate it this year.  I had several low moments this year when, with a certain amount of bitterness, it crossed my mind that I might not make it to my 34th birthday.  Yet here I am!  With lungs full of oxygen and no more breasts to poison me!  Who knew that 34 would feel so good?  

I hope you all are having an excellent week.  Please help me spread awareness of IBC!