Sunday, January 22, 2017

My Resolution

Two Thousand Seventeen is the year I resolve

to boldly go to the places our culture tries to keep in the shadows

to walk into accepting myself

to reject the million and one tiny ways a man’s world holds women back

2017 is the year I stop apologizing

for self care

for the way my body looks

for my thighs not fitting into my jeans, for there’s no such thing as ‘too many deadlifts’, or ‘too strong of a woman’

for not stepping on the scale

for requiring western medicine, and full access to it, for my best health

for not wanting more babies; for understanding my limits on caring for children

for standing up for other women’s limits on caring for children

for being an introvert

for being an atheist

for requiring time away from my children

for looking at my phone, and the information I keep on it, and the relationships that I have from long late-night messaging

2017 is the year

I will lay in bed for hours with my 8-year-old, watching Doctor Who

I will play Mario Brothers on the Wii unabashedly with my 3 year old.

I will learn everything you ever wanted (or didn’t want) to know about Pokemon and the Power Rangers from my 5 year old.

In 2017 I will read, voraciously. Not because I’m ‘supposed to’, but because I like to read, and I deserve it

I will go to the gym, and lift heavy shit, and love every moment of it, even the moments that feel a little like death

not because I think it will make me thin

but because I know it will make me STRONG

This is the year I stop defending those guys I’ve ‘known forever’ who are ‘nice guys under it all’, who refuse to acknowledge women’s issues.

This is the year I will shout you down

I will scream as long as I have to

women’s rights are human rights

my best friend is a lesbian.

black lives matter

immigrants are people

rape culture is real

Our culture is built to accommodate white men,

and I will not apologize for smashing the cornerstone of that foundation

And yet, I will try to remember

that love wins

that there’s a last word, but there’s always a word after that

that the next generation is growing up kinder, more accepting, less tolerant of right wing bullshit
and soon they’ll be in charge

This year, I’ll marry any gay couple that asks me

as an act of love and service

and an act of resistance

In 2017, I will say “no” to more outside my home

I will remember that “no” is a complete sentence

I will unfollow that woman on the school facebook group who passive-aggressively shames everyone who isn’t signed up to pop school popcorn, as though she were Atlas, holding the world of popcorn on her shoulders

I will say “yes” to the things that make me happy.

to new friends

to old friends, rekindled, and those who have been along for the ride for all this time

to being alone when I’m burning out

to adventures with my kids (we’ll make a summer bucket list again!”)

to cheesecake

to having that show on netflix my hubby and I can’t watch without each other

to writing

to sewing

to comfortable shoes

In Two Thousand Seventeen, I will practice extending grace to myself

and try to treat myself like I would treat a beloved friend

I will invite friends in, even if I haven’t swept yet, because hospitality means inviting you into my life as it is

I will embrace that vulnerability, because that’s where connection happens

I will give myself permission to distance myself from harmful people

and I won’t feel bad about it

In this great year,

I will love myself well

I will love my family well

I will fight for the people I love

and the ideals I uphold

In 2017, I’ll be afraid, but I’ll know that fear is ok as long as you face it

I will rise up against it, and be the best self I can be

Follow Up - One Month Later

Originally posted on my What Friends Do blog, 11/20/16

I have now been home from the hospital for an entire month!  We've made a lot of progress in that month and also gotten my follow-up doctor appointments in, so there's a bit to update on.  TL;DR at bottom of blog post.
First, for the follow-up doctor appointments.  Last Wednesday I went to see Dr. Kesler, the surgeon who removed my tumor.  He didn't have a lot to say other than I look pretty good and I can do the rest of my follow-up scans with my pulmonologist.  Dr.Kesler is a nice guy, but I'm pretty excited about never seeing him ever again.  I am also cleared to drive again and to start working out again.  I'm supposed to take it slow and easy for the first 2-3 months, but it will be good to start back at the gym again.  Sophia at CrossFit Fort Wayne will be working with me to start getting me back on track, movement-wise.  I'm really excited about that.
Friday I went to see Dr. Khare, who is an endocrinologist at IU Health.  She was called to see me during my hospital stay because of the intense flushing episodes that I was experiencing (which have since stopped completely).  She ran two different tests to look for additional tumors; a chromogranin-A blood test, and a 5-HIAA 24-hour urine test.  Both tests came back well within the range of normal, which is a great sign.  Chromogranin-A tests have 95% specificity, which means that 95% of the time, if they come back normal, there is no tumor.  Dr.Khare says that the 5-HIAA test is even more accurate, though I wasn't able to find accuracy rates for it online.  The combination of both of these tests being normal is very good news, and means it's incredibly unlikely that I have any additional tumors. My biggest concern was potential metastasis, which often go to the liver with this type of cancer.  Liver metastasis nearly always show up in these two tests, because once there are tumors in the liver, the liver can't process the hormones they emit anymore, and they go into the urine and the bloodstream.  So these tests were particularly helpful for me in ruling out the biggest concern I had left.
Do you hear that, guys?  I'm cancer-free.  Thank you, Science.
Becuase there's not really much that an oncologist can or will do for me right now, and my pulmonologist will be ordering my follow-up scans for the next several years, we're not planning to follow up with the oncologist again unless I have additional issues.
So that's all the good medical-type follow-up news.  It all looks very good from that standpoint, and I am feeling incredibly lucky for how this whole thing turned out.  I really think we will be able to just pick up and go about our lives without much more than yearly CT scans. Hallelujah!

The rest of my update is pretty much where I am recovery-wise.
Right now I'm doing much better than we had anticipated going into the surgery.  We were told to expect some truly grim things, like me not being able to wear shirts that weren't button-up or sleep in a bed for several months.  Thankfully, none of those really grim things came to pass.  I bought 3 button up shirts pre-surgery, and I've worn one of them three times.  That's it.  I did sleep in a recliner for a few nights after coming home, and in the following week got up from bed and transfered to the recliner a few times during the night.  A week or so ago we moved the recliner out of the bedroom, and I'm sleeping in bed lying down just fine.
I'm now back to being able to do most of my normal daily things, but in small increments.  There are still some things that give me trouble - particularly things that require a back and forth arm motion with my right arm, like vaccuuming or raking.  I'm not doing those things right now because they hurt.  Bending over is difficult for me to do without pain.  I'm starting to be able to bend a bit more, but I still have to be careful about it and not bend over too much, or my back near the top of the incision starts to really bother me.
Sitting upright is more difficult that I had anticipated.  As long as I can lean back a little bit into something, I'm ok.  So, for example, the sofa has enough give to be comfortable.  Sitting at the dining room table is much harder.  I can sit upright like that for awhile, but most nights by dinner time I'm hurting, and sitting at the table for dinner is unpleasant.  I can stand and walk for an hour or two at a time before needing to sit again.
I still need more rest than I usually do, so I'm napping during the day or going to bed at the same time as the kids some nights.  If I disappear and just don't respond to you for entire evenings at a time, that's why.
So, I'm up and around, but I'm slow and limited.  Can I go to the grocery?  Yes.  Can I hit all three stores I usually go to and knock them out in a long afternoon?  Nope.  So I'm getting by, I'm just needing to take life much slower than I'm used to.  Sometimes that's really frustrating, but overall we're doing alright.  The biggest challenge I have right now is that I'm slow, slow, slow, but my kids are still fast, fast, fast.  They're young and still need a lot from me, and because they're young, our house also needs a lot from me in terms of trying to keep up on food, dishes, cleaning, etc.  We've gotten a lot of help from the community, and we broke down and hired a cleaning service for right now as well.  That has all made a really big difference in terms of being able to manage everything.  Moving forward we'll be trying to transition some into me doing more and needing less help.  Sometimes it's hard to find the balance, and already we're going back and forth between feeling like I did too much, or feeling like I got help I didn't need right at that moment and tring not to feel guilty about it.  I'm giving myself some grace in recognizing that it's not easy to balance out, and that healing isn't linear, so there are just going to be days like each of those.
Over the next few weeks, we'll be phasing out the events on this page, little by little, as we try to find that balance between what I can handle and where I'm limited.  I can't thank all of you enough for checking back up on the calender, checking in on me, and helping to make this recovery as smooth as possible for me and my family.  It has been truly incredible.  Seriously.  You guys are the absolute best.  Never in my wildest dreams did I imagine people would come together as this enormous safety net for me in this way.  I can't express my gratitude enough.


*Follow-up appointments - I don't have cancer anymore!  I can drive again!
*Other stuff: I can do a lot of stuff, but I am slow and need lots of rest


Originally posted on my What Friends Do blog, 10/20/16

I'm going to do my best to recap the past two weeks, but first I want to say that I am home from the hospital today, and Lumpy is gone!!

On October 11, I went into surgery and had the upper lobe of my right lung removed via thoracotomy.  For those of you not familiar with lung anatomy, the upper lobe of the right lung is a little under half of the right lung.  Here's a pic for reference:
The right lung has three lobes, while the left lung has two (the heart is hanging out somewhere around that left lobe as well).

So, I'm currently down about half a lung.  Amazingly, I'm told that the lower part of my lung will eventually grow back up into the space that the top lobe used to occupy, and that in a few years' time it will be hard to tell on x-rays that it isn't my original full long.  Wonders never cease, I guess.  In the meantime, I'm down part of a lung and predictibly am tiring very easily and am short of breath with much exertion.

The thoracotomy is the incision used to access the lung.  It runs from the side of the body, just below the breast, up and around the back.  Here's a non-gory pic for reference, including the chest tubes that are put in with this type of surgery:
My incision starts a little more toward the middle of my side, but otherwise this is pretty accurate.  I would guess my incision is somewhere around 12 inches long, or maybe a little longer.  The chest tubes then go up into the lining of the lung to collect the insane amount of fluid that is produced there.  Apparently, the body works hard to fill in any voids, and fluid is what it generally has to work with.  These tubes drain the fluid out of the lung area and into a collection box.  Once the drainage slows to a certain amount (100ml per 24hours is my surgeon's magic number), the chest tubes can be removed.

So, on October 11, I walked into the hospital mostly feeling pretty healthy, underwent surgery, and had Lumpy removed with the top part of my right lung.  It's been hard to wrap my head around walking into the hospital feeling strong and healthy and walking out with significant deficits.  I've never purposely gone into a hospital with the intention of making myself feel worse.  I know it's for a good cause; that you can't just leave cancer sitting in your lung, but it's still been difficult for me to adjust to the idea.

The surgery went swimmingly.  Everything went according to plan, and they finished up even more quickly than we'd anticipated.  IU Health is a teaching hospital, and one of the doctors attending the surgery even told me ahead of time that they were excited for my surgery because I'm young and healthy and they anticipated it would go well.  (What an awkward conversation..... "We're really excited to get in there and cut your lung out!"  "Ummm.  Thanks?")  While Dr. Kesler (my surgeon) comes across as awkward, he's an excellent surgeon that patients travel from all around the country to see, and I feel incredibly grateful that he was willing and able to do my surgery.  He's also very kind and sympathetic, which helped.

The first days following the surgery were a lot more difficult for me than I had anticipated.  I thought I would be pretty much sedated the whole first day, and that pain would be adequately controlled.  Unfortunately, I was in far more pain than I anticipated, and I was with it enough after surgery to be conscious when they took the intubating tube out of my throat, which was not super fun.

No one told me in advance to expect that the chest tubes would be insanely painful, but I found out pretty quickly.  I had an epidural that released a steady stream of pain medication, as well as a PCA (patient controlled analgesia), which is essentially a button that is hooked up to a pump with pain medication that is then hooked up to an IV.  The patient can press the button as frequently as they need pain meds, and the pump will dispense it, but only in amounts and time intervals approved by the physician.  My first day was essentially a series of me rising to consciousness to press this button, which didn't release nearly enough pain meds nearly often enough to keep the worst of it at bay.  I vaguely remember groggily wondering if there hadn't been some mistake, and instead of performing the surgery someone had lit me on fire instead.

Thankfully, after the second day, the worst of the pain was over.  There were several mornings where I had a very hard time getting from 4am to about 7am, and as of right now I still have incision pain and muscle pain and anticipate that I'll have that for a pretty long time.  I no longer feel like maybe my incision is actually fire, though, so that's a marked improvement.  The pain got much better after the first tube was removed, and now both tubes are out, which is wonderful.

One weird thing that I ran into at the hospital was that I had severe hot flashes - they were very intense, and some lasted up to an hour and beyond.  I've struggled with these for the past few years (more accurately called "flushing episodes", I'm told), and since they started after Reid's birth I assumed that they were related to hormone changes.  I've since learned that carcinoid tumors can secrete hormones that cause flushing, and it's likely that this has been the cause of my flushing episodes over the past few years.  However, these were happening a few times a week, mostly under heavy physical exertion (like after a CrossFit WOD), and lasted 10-15 minutes.  I thought getting the tumor out would make the flushing episodes stop, but for whatever reason they increased and intensified after surgery.  They have tapered off some, and I'm working with the endocronologists at IU Health to try to figure out why they're happening.  So far my thyroid labs have come back perfectly, and blood tests that could indicate the presence of another hormone-secreting tumor came back negative (whew!).  There is one more test I'm waiting for results from, but it won't be back for at least another week.  This is another test that would indicate the presence of another hormone-secreting tumor, so we're hoping hard that it also comes back favorably.  If it comes back positive, then we have to do additional scans to locate the site of the tumor and figure out how to get rid of it.  Given that the tumor in my lung was fully encased and that all the lymph nodes were clear, it's very unlikely that I would have metastasis, but I'll still feel much better if another test comes back negative.

Speaking of Lumpy, I did get the deets on him.  He was 2.4cm long at the longest point (so about an inch, which Dr. Kesler repeatedly referred to as "THAT THING IS *BIG*" while his eyes got the size of saucers, but which I didn't realize was all that big).  It was sent for pathology and is definitely, for sure, forever and ever amen, a typical carcinoid tumor.  It was fully encased in a border, which further supports the finding of it being typical, and also means it is incredibly unlikely to have spread anywhere else in my body.  Typical carciniods metastasize only about 10% of the time, and even less when there's a full border around the tumor.  I'm trying to be optimistic about my odds, though we've already defied the odds several times here.

Lumpy is annihilated.  He came all the way out, went to pathology, and he is DESTROYED.  Do you hear that, cancer?  DESTROYED.  DO NOT FUCK WITH ME OR I WILL TAKE YOU DOWN.


Anyway.  I anticipated being in the hospital for "5-7 days, probably on the shorter side since you're young and healthy".  However, I ended up being there for 10 days all told, including today when I was released.  Although I was recovering well, getting up to walk around, having steady vitals, and all that good stuff, my chest tubes were draining too much to be taken out.  On Monday, they took out the tube furthest toward my back because it wasn't draining much anymore, but the second tube just wouldn't stop draining.  Dr. Kesler offered to send me home with the second tube still in, but I wouldn't be able to have it taken out for another week after leaving.  Given the way we were struggling to control my pain even with access to intravaneous pain meds, I didn't feel good about essentially committing to a week of chest tube pain that may or may not be controlled by oral pain medications.  I was also very nervous about going home to the kids with a chest tube.  Reid is still only 3, and is limited in how much he understands and in impulse control.  It was easy for me to imagine one of the kids accidentally pulling on the tube, or someone climbing up into bed half awake, pulling on the tube in the process.  In the end, I decided to stay until the second tube could come out.  It was a very difficult decision for me, and I really struggled with the last few days in the hospital.  My endurance for the whole thing was pretty much shot.  I was tired, I wanted to see my family, and I just wanted to be home.  I am pretty glad that I didn't end up at home with a chest tube for a week, though.

So, I'm home!

Now what?

I still have to wait a few days to shower.  The bandage where my tube came out and where I had a central line can't be removed for 48 hours.  I'm devotedly washing my pits with a clean rag, but I'm probably still kind of stinky.

My back looks a little like Frankenstein's monster (bonus: Halloween costume complete).  My incision is sore and itchy.  Eventually all the steri-strips on the incision will fall off.  That's the easy part.  The muscles, nerves, and tendons that were cut underneath that incision will be sore for a very long time.  I will have to rebuild strength, and work hard at preserving and improving mobility on that side of my body.  Right now, sitting upright for long periods of time (say, 2 hours) is painful.  Laying flat is nearly impossible without a good deal of discomfort.  Bending over isn't happening.

My brain is catching up with the reality of no longer being a normal, healthy adult, but a cancer survivor with significant physical deficits.  The physical deficits will get better.  Living with lifelong cancer scans and the constantly underlying knowledge that I've had cancer and I can have it again might take longer.  Acceptance is hard.  Trying not to live in fear is hard.  I'll be working on it.

In another month I'll go back and see Dr.Kesler and an endocrinologist at IU.  I suspect they'll both tell me I'm doing great and to go on my merry way.  Dr. Kesler will probably tell me to have a CT scan done annually for the next 10 years or so.

After that?  

We rebuild.