Tuesday, March 24, 2015

The Reward

I went to see my oncologist today.

Technically he's my "gynecologic oncologist."

Whatever he's called, I went to see him.

These are unexpected words. And I understand that, even with my constant descriptions on this blog, sometimes people feel out of the loop. There aren't enough words in the world to adequately explain to your friends that your life is changing, and you don't know everything, but you hope they'll support you. Okay, maybe there are enough words, it's just hard to find the right ones at the right time.

So I'll start at the beginning, for those of you who feel like you missed something. There will be fancy links so that you can go back and read those blogs, if you wish.

On February 21st I announced I was having surgery and asked for prayer. I went in for the surgery on February 26th and the next day began describing my experience, in three parts, which you can read here, here and here. A few days later I got the results of the surgery and they were not what I had hoped for. I began the process of life with "pre-cancer" which seems silly to say, but as my doctor would say, "It's nothing to sneeze at." I have a 5% chance of getting full-blown cancer, and am now working diligently to avoid that.

It's almost a month later. I finally had my post-op appointment last Friday, and I am healing up as expected. My doctor re-explained everything to me, which was irritating. I often feel like my doctors think that I'm stupid, or that I am uninformed. They behave as if "pre-cancer" means nothing to me, and clearly I don't do my own research.

I do my own research. I am a woman of words.


So I went to see my oncologist today. I had been dreading the appointment a little bit simply because I know that down the line he'll need to do more painful biopsies and, of course, he's a man. Last week I was discussing these anxieties with a friend, and she suggested that I think of something fun to do after the appointment, so I would have something to look forward to.

But when today finally came, I was so concerned with getting to the appointment on time and then getting to work on time afterwards that I forgot about the reward. I slept in longer than I should have because my bed was abnormally comfortable. As we sat in the car I suddenly realized, and then said aloud, "I really don't want to do this." Still, we made it to the appointment on time, and then I sat in the office waiting for twenty minutes after my nurse said, "We'll be right back."

My doctor looked like a taller, chubbier Ben Stein with giant Fezzik hands.

He also sounded like he had something stuck in his throat. His humorous appearance and voice perfectly counteracted his intimidating height, and I relaxed a little bit. 

Overall, it was a fairly pleasant appointment. My nurse was incredibly sweet and funny--she genuinely laughed at my jokes! They did an exam, so quickly I didn't even know it happened until it was over. We talked about future appointments, and potential procedures, and the options I had for my "therapy" medications.

It wasn't until we were back in the car, trying to find our way out of the parking garage, that I realized how stressed I'd been and how much I needed some sort of relief. I wanted a reward, and so I jokingly said to my husband, "Can you get me coffee today?"

He obliged with the largest soy mocha he could find, of course. 

But it reminded me that all of this is necessary. It's imperative. It might be awkward, and my doctors might treat me like I don't know anything, but it's an important part of the process. The hard work comes first, and the reward comes later. This is true right now, for this part of life, but it is also true for everything else... everything else I'll ever do is just the work I must finish before the great reward.

Yeah, I made that spiritual. Deal with it.

Next week, starting April 1st, I'll begin my therapy (in pill form, thank goodness.) It will supposedly make me extremely hungry, so I might be updating you all as my munchiness progresses. 

As always, I am grateful for the support of those who read this blog.

Thank you for being part of my story.

Friday, March 20, 2015

The Soul Who Seeks Him

The future is always unknown. As humans we would like to believe that everything our heart desires will come to us when we see fit, that the routines we develop and the lives we build will suit our whims for predictability or spontaneity. We know that the sun will rise tomorrow and the earth will make its turns and somewhere rain will fall and somewhere else it will be hot and people will be born and they will die and in general, life will just go on as it always has.

And we would like to say with complete certainty that what we want to happen will also happen. We say, "I will go to this college" and "I will marry a rich man who supports my career" and "All of my children will play the saxophone." Those are the big things we want. The big dreams, the foundations for the other things in life. We also say, "Tomorrow I will get an oil change" and "I'm going to read that new bestseller" and "I think I'll go to New York for Christmas."

We plan all these things, big and small, tedious and thrilling, the mundane and the marvelous, day in and day out because we like to think we're in control. But we're not.

You might not get into that college. You might marry a different, less-wealthy, less-supportive person. Your kids (if you have them at all) might want to play the kazoo instead, or be stand-up comedians. And you might crash your car on your way to get the oil changed, you might be too busy to read that book, and maybe your kazoo-playing children all get the flu at Christmas so you can't go to New York.

And I say all this because it's true for me as well. I make plans. I have dreams. I intend to read the books and I even buy the books and they just sit there, waiting. I buy the Groupon for a cheap oil change and forget about it. I wanted to be having kids by now. And I'm not.

As I sat in my obgyn's office this afternoon she explained how I'll probably need 6 months of therapy, and there will be regular biopsies, and that I only have a 5% chance of getting cancer at this point. She said the therapy would likely be in pill form, so there wouldn't be many visits to the doctor's office. Relief washed over me, and then I suddenly realized in a real-world kind of way that I might not be in the same state in a few months. We're waiting to hear about a job back in Washington, but back when we applied I didn't know any of this was going to happen.

When we applied in December, I didn't know I had abnormal cells of any kind, let alone pre-cancerous ones. I didn't know I would be going in for loads of bloodwork and procedures and then a surgery. I had no idea that I would need months of therapy.

I asked my doctor, "What if I'm not here?"

She laughed and said I would simply have to get a referral and continue therapy somewhere else.

I have all these decisions that I might have to make. Or might not. I don't know.

But I do know that God has a plan for all of it. It might be different than my plan, if I had a plan, which I don't. Even if I had one, his would be better. Even if I had one, his would be wiser. Even if I had one, his would be the one I would prepare for and wait for.

So that's what I'll do. I'll wait.

Thursday, March 12, 2015


While tutoring a ten-year-old today I came across the word 'recess.' He had two long lists of words to study, and this was one of them. I varied the studying methods--a definition there, a spelling here, a sentence for each one. I asked him what recess was and he said, "When you get to play!" I agreed, then reminded him it could also just mean a break.

It immediately brought me back to my own ten-year-old self, and all the recesses I was forced to endure. As an adult I am more aware of the rest of the word--it offers us a break from real life, a respite from the day-to-day or the overwhelming. It could mean we take a long bath or go for a walk or snuggle with a fluffy dog. Maybe it means hot cups of coffee with friends or watching hours of Netflix or going swimming.

As a child, it was strictly for playing outside. I grew up in Washington state, and our school took recess very seriously. We had one mid-morning and another right after lunch, and it had to be raining (not drizzling, which is more common) in order for recess to be held inside.

I loved indoor recess, but not for the reasons you might think. I actually loved playing outside. At home, I would spend hours playing in the woods, climbing trees and riding my bike down a dangerously steep hill. I had scraped knees and slivers and weird tan lines on my legs from hours spent rollerblading. Being outside in my own domain was a thrill and a joy.

But being outside on a playground where some unknown "Recess Duty" would admonish me if I didn't have a ball in my hand or wasn't swinging on the monkey bars was more like a punishment. I was also extremely shy, extremely terrified of strangers and confrontation, and so the prospect of being approached by the Recess Duty because I wasn't "playing" scared me to death.

I wanted to be inside reading--which is, of course, why I loved rainy days and indoor recess. I loved curling up with a book in my classroom's library, or coloring vast landscapes at my desk until the bell rang again. There is something depressing about the fact that 'play' used to only mean running, jumping, or climbing. I hate that the other kinds of play, the kinds I was so connected to as a kid, were somehow considered lazy or less beneficial.

As I went on a sort of emotional adventure last weekend, this weekend I'll be taking another break from the real world--a recess, you might say. It's time for another road trip, for sure. In recent weeks I have been overwhelmed by doctors and recovering and bad news, and the turmoil of knowing it's all going to get more painful and overwhelming before any of it gets better. Starting next week I have my first post-op appointment, so before all of it begins...

I'm taking a recess. I'm going to play. I'm going to be with friends. We'll watch movies, drink tea, maybe even read books or draw pictures. I'm going to take a break and play in the way that most benefits me. I don't even care if it's raining.

Friday, March 6, 2015

I Gotta Feeling

As I'm sure some of you have already discovered at this point in your lives, there is no rule book for feelings. There are unwritten, unspoken rules, unclear rules like "don't make mountains out of molehills" and "don't cry over spilled milk." The problem is, even unwritten and unspoken those rules are more about what you do with your feelings that how to have them. The Bible tells us a lot about actions--don't steal, don't kill, don't sleep with your neighbor's wife--things we should or should not do when we feel certain things. We should act on our forgiveness, and not on our lust. We are commanded to love, which might seem like a feeling, but we know it isn't. It also falls under the "behavior" or action category. The Bible doesn't say, "Always be happy" or "Never be angry" or "Stop being such a grumpy pants."

This leads to a life full of questions about the way we feel. Feelings are these complex, intangible things that prompt us to speak out of turn or behave in bizarre ways. If we happen to understand the Bible a little bit we know that certain feelings should not make us act--our most passionate anger should not cause us to kill someone or act violently. It's also true that even if we never follow the directions about how to act, we do know where to look for those rules, and even if we don't feel the Bible will lead us to the answers, they are still prevalent in most societies. Don't kill. Don't steal. Respect other human beings. These are commonplace rules about what to do or not do with our feelings. But there is still a chasm of uncertainty about how to simply have feelings in the first place.

To some this might seem like God doesn't care about our feelings, that he put them out there for us to use without any proper guidelines--but it's the opposite. If he didn't care, he wouldn't allow us to have them, wouldn't give us opportunities to let our feelings push us in one direction or another. He wants us to have them, to some degree. And we certainly have them. We have them often, inappropriately, unnecessarily, abundantly, intensely, and sometimes they come out of nowhere. But the problem with feelings, even after you've figured out how to have them, is that most of the time that's not enough. We want to do things with our feelings, and that's why the rules about actions are so much clearer than the rules about possession (so to speak) of feelings.

This is why we have thirteen-year-old Katie professing her "love" for a thirteen-year-old boy. (Granted, my friends convinced me that I had to tell him, but they were also thirteen.) 

This is why people bite their nails and smash things and flip people off in the car.

This is why we have dating sites and music therapy and talk shows and... drugs?

See, in spite of the fact that there aren't really any rules about your feelings, you can still expect to have them, and you can still expect the world to tell you what you should do with them. Nobody on earth really knows what you should do, but they'll tell you anyways. They'll tell you to go after that girl/guy you are hopelessly in love with, and to let go of your anger because it leads nowhere good (which is a bold-faced lie, fyi). These are the same people who believe "happiness" is the end-all be-all in life and that you can choose it, therefore your clinical depression is a mind-over-matter issue and that, of course, all your other feelings are also dictated by your attitude.

All. Lies.

I firmly believe that all of our feelings and emotions are valid, and by that I mean we are entitled to feel things even if we got to that feeling by mistake. For example, I once had a delicious cup of coffee I had been saving and I left it on the table while I went to the bathroom. When I returned it was half gone, and I was irritated because I thought my husband had done it. It was actually the dog. My irritation was valid, simply because something important to me (my cup of coffee) had been violated or compromised. If I had punched my husband in the face in my irritation, I would be in the wrong. However, simply feeling irritated because something went wrong is completely reasonable. I would have had the same emotion if I had spilled my own coffee. You can see how this would apply to other situations. The actions which our emotions lead us to are not always valid, but the way we possess our feelings is justifiable. 

I mentioned the other day the tiny bottle brimming with ibuprofen that I was prescribed after my surgery. At first glance, I thought, "Well, I'm gonna be needing those!" They wouldn't give me so many if I wasn't going to need them, right? I will be feeling pain and therefore I should want to get rid of it. 

And at first I told myself I didn't need them. And then I did. And I do right now.

But if I had wanted to, I could have said, "Nope. No pills for me! I'm invincible!" I didn't say that, because I don't actually enjoy pain, but I could have. I could have chosen to fully feel the pain--I would have been choosing pain over all other feelings. I would have chosen pain over the joy of reading a good book, over the relaxation of a hot shower, over restful sleep and being able to eat without feeling nauseated, over laughter and long conversations and coherent thoughts.

What I'm really trying to say is that in the face of different feelings, we get to choose which one to focus on. It doesn't mean the pain is gone, or that I am completely at ease with all of this post-surgery nonsense. I am not. I am quite suddenly bombarded with the confusing burden of "pre-cancer" and there is definitely a part of me that just wants to panic and be sad. And yet, there is this other part of me, this resilient part that is absorbing the support of all my beloved friends and this part of me feels unstoppable, unshakable, unafraid. There is something so uplifting about knowing that if I wanted to scream and cry there would be support all around me. If I want to do the opposite, if I want to find joy and beauty in the midst of the pain, I find support there as well.

So I am taking those painful feelings and I'm going to put them in my pocket for a little while. I'm going to take a break from being sad and just let myself be at peace.

The pain and fear and panic are present, but only among so many other things to feel, and to do. I'm about to have an incredible weekend, during which I will get to support some wonderful people and in turn be supported. I'm going to work hard, and in that space if I find myself sad or anxious or joyful or excited, the support will still be there.  I'm going to feel all my feelings and it's going to be beautiful.  Nobody else gets to tell me how to feel. If doing this makes me feel fulfilled, joyful, encouraged, loved, precious, exhilarated, invigorated, or whatever... nothing is going to stop me.  I might hurt at the end of it, but it will be worth every second. This is my pain, and this is what I'm doing with it. 

And so I just want to encourage anyone reading this that you should own your feelings too. Owning them doesn't mean you're going to run people over with your car when you're angry, or call your ex-boyfriend when you're sad, or buy an expensive and unnecessary trampoline when you're really excited about life. (Even though that sounds really awesome, and if anybody actually goes and buys a trampoline, please invite me over to play on it.) You just get to hold your feelings, and look at them, figure out why you have them, and then... you get to decide if you want to something with them. And what sort of thing you might do with them. Or not.

Today I choose to do, to behave fearlessly, and I'm going to feel incredible about every moment... because that's what I've decided.

Tuesday, March 3, 2015

Recovery, Results, Requests

They gave me this bottle of high-dosage ibuprofen. This little tiny bottle was literally brimming with pills, as if to say, "You're really gonna need these!" My first couple of days home I took them as a precaution, just to ward off the pain I feared would come. Even though I was mostly just sore, they helped, and made me more comfortable if nothing else. By Sunday I was actually feeling some significant pain, so I took them as a necessity. I have a very high pain threshold, but everything is a bit overwhelming right now and the added sensation of sharp stabbies and hard pokies made me very anxious.

Overall I was feeling pretty good about everything. Even the minimal pain I felt was tolerable, the cramping had subsided, and my limbs stopped aching every time I breathed. I knew I was well on the road to healing when I could sneeze without any trouble. I was under the impression that things would soon go back to normal, I would have my post-op appointment with my doctor, and I could begin the process of making tiny humans.

Then yesterday my obgyn called me with the results of the surgery.

This part is hard because I feel like nobody wants to hear it. Nobody really wants to read a blog about my uterus. (Even writing it is weird. It shouldn't be.) It's hard to blur the lines of me vs. my body because I know I'm not writing about my body... I'm writing about me. This story is about me, not my body, not my organs, not my cells. Me.

And I could write all the fancy medical terms to explain what's wrong, except that wouldn't cover it either, since it doesn't really answer much. It doesn't tell us what's wrong overall. It's just a piece of what's wrong, another jot or tittle in the story I'm telling.

So here's the gist of it: I have pre-cancer. There are 4 stages of this particular kind of pre-cancer and I have stage 2. I'm looking at 3-9 months of therapy, the details of which are not yet clear. I also have to have regular colposcopies and biopsies.

If I wasn't clear the other day, the one colposcopy I had back in December was the singularly most painful experience of my entire life. I'm sure that my brain lights up like a Christmas tree when I think about the trauma endured during that procedure. It was not only painful physically, but mentally as well. I felt messed with--I was told I would have a local anesthetic, and I didn't. I was told it would be "relatively painless," and it wasn't.

The fact that I have to go through the same thing regularly is devastating.

Thus, I am here again, asking you all to pray with me. In the face of this painful and confusing situation, I am not about to doubt God. I know he hears me. I don't know why any of this is happening, but I know he hears me. He hears us. So please continue to pray for me and with me. Pray that the therapy is only required for a short time. Pray that the colposcopies and biopsies would be quick, short, and that I would be provided with anesthetic or (even better!) that they would just put me out for the procedure. Pray that this entire thing is merely a detour... and that soon I can move on to the process of becoming a mother.

As a side note... in the spirit of honesty, I want to express how thankful I am for the people who were so indescribably supportive last week after my surgery. It was such a blessing to be able to tell my story on my blog. You not only read my words but you shared your feelings with me afterward. I am grateful for your time and your friendship, and hope you'll stick around as I continue this journey. You are all incredible.

Side note #2... my blog got a makeover. :)

Sunday, March 1, 2015

Surgery, Part 3: The Flow

It's nothing like sleep, but it feels like it should be. One moment someone is telling you to "hop" from your hospital bed to the metal table, and the next moment you're somewhere else and despite the quiet atmosphere and the dim lighting you feel full of chaos. I'm a pretty flexible person. I can change a lesson plan in five seconds if I have to, I can think of another way to get somewhere in about five minutes, and when I make a mistake during a conversation I don't waste time pretending it didn't happen. I go with the flow--it's the most efficient way to do things.

But I felt incapable of going with the flow. There was no flow.

I woke up feeling extremely irritated that I was sleeping on my back. I hate sleeping my back. Actually. to be more accurate, I can't sleep on my back. I wake up. Like every two minutes. But I was in this stupid hospital bed with a stupid mask on my face and it didn't fit right so every time I breathed a puff of air went into my eyes.

I thought, "Maybe I can roll over." I kept looking down at my arms, realized I didn't have my glasses or contacts, noticed there were giant pillows under each arm, and fell back asleep. There was a nurse to my right, and I could hear her say they couldn't find my husband.

This news caused my achy, sore body to be filled with rage. Where had Joey gone? Didn't he know I was in surgery? He was actually there in the waiting room, but had his headphones in and didn't notice anyone calling his name. But I didn't know that. I didn't know anything. I was just busy trying to find the flow so I could go with it, but it couldn't be found. So I just stayed mad, and remembered I was still trying to sleep on my back, and got even more mad.

It felt like I was laying there forever, and I wanted to talk, but I couldn't. So I groaned, like a grumpy old man. I would wiggle my feet around and hated that they were touching the curtain at the edge of the room. There was a guy in the bed next to me, and if I turned my head I could see that he wasn't wearing an oxygen mask, and that pissed me off even more. So I just kept wiggling around and groaning and trying to wake myself up enough to get that stupid mask off my face, and kept angrily glancing at the man in the bed next to me until he seemed to stare right back with just as much venom.

When the nurse removed the oxygen mask my rage and fury subsided. A male nurse with beautiful brown skin suddenly appeared at my side, wheeled me down to the recovery room and then disappeared just as quickly. I felt fuzzy and sore all over, kind of happy, and kind of confused.

Another nurse helped me out of the bed and into a fancy chair, all the while saying, "Oh, your hair is so pretty!" and I wanted to tell her I dyed it, but couldn't remember the words. I felt dizzy, and as I scooched from the bed to the chair I realized once again that I was wearing a gown and everyone could see my bum--except now they could also see the weird post-surgery underwear that had someone gotten onto my body. I ignored how terrifying and humiliating that was and sat in the chair where I immediately curled my legs up in front of me and asked for some water. 

At some point, Joey appeared, carrying my purse and coat and my bag of "comfortable clothes." He gave me my glasses and a kiss and fluffed the pillow behind my head, and informed me that he'd called my parents to let them know I was okay. My first sip of water was next--it felt like acid. My throat was so sore from the breathing tube, but it was my first food or water in 17 hours and I was parched.

I remember talking, but don't remember the words. I remember my nurse asking me over and over again if I wanted any food or juice. Another nurse hooked me up to some fluid because, "Yes, doctor wants her to empty her bladder before she goes home."

My apple juice smelled like bananas, and also felt like acid. Why was everything refrigerated? Why can't I have room temperature juice? Nurse #1 kept pestering me about food. "We have pretzels, and cookies. Chocolate chip? We have Lorna Doone cookies!"

I said "okay" because I felt a little like I'd found the flow. The flow is being forced to drink apple-banana juice (kind of like onion banana juice, eh, ATLA friends?) and eat Lorna Doone cookies. My only problem was that I had no recollection of Lorna Doone but some part of my brain hoped whoever she was made cookies that were similar to ice cream, or maybe french fries.

They were shortbread cookies. They tasted fine but they felt like wood chips.

And then, as if a heater had just clicked on overhead, my entire body flooded with warmth and I needed to pee--now. Thus began the adventure of the supervised bathroom trip. That morning when I'd first gotten to the pre-op area I'd noticed there was a curtain in the bathroom, and I thought--well, must be nice, for the elderly or people who just had foot surgery or something. There was a sign on the door explaining our safety was more important than our privacy.

Nurse #2 showed me some compassion and put a secondary gown on my back so that the world did not see my bum, and allowed me to take her arm as I hobbled to the bathroom and she held my IV bag. Once in the bathroom she hung it up on the wall hook, pulled the curtain, and left me there with the toilet containing two plastic measuring receptacles.

I will not tell you anything more about the bathroom, except this: As we hobbled back to my fancy chair Nurse #2 called out to Nurse #1, "She did it! Almost 300 milligrams!"

I passed the pee test, and there was much rejoicing.

It became clear to me that whatever I thought was normal, whatever I thought "going with the flow" was, it didn't exist for post-surgery Katie. Post-surgery Katie would have walked down the hallway by herself and shown her bum to the world, if they had let her. Post-surgery Katie (who was called Katherine all day, just for the record) didn't care about the curtain in the bathroom or glaring at the man in the other bed.

As we left the hospital I couldn't help but feel absolutely fearless. I couldn't help but be impatient, to make my follow-up appointment, to find out the results, to see what the next step would be, to turn into something greater. I couldn't help but feel like I was a brand new person. I had left that other woman on the metal table. Her chaos had followed me into waking but I left that behind too.

New day. New person. Time to find a new flow.