Hope in Strange Places

I got up early this morning to drive to the local office of the Department of Social and Health Services, otherwise known as Welfare. When I was at the hospital last week after I received my diagnosis I talked to someone in financial services who said that in order to get my application for Charity Care processed I'd have to file for assistance from the state first.  I filled out an application online but after the events with the scheduler I decided to go today to see if I could possibly expedite the process.

I walked in through the sliding glass doors to a room that looks like the room in every government office that delays with the public. There was a bank of service windows at the back of the room with thick glass separating the DSHS agents from their clients.  The middle of the room was filled with the kind of chairs you expect to see in waiting rooms, with heavy wood frames and stained upholstery.  Off to the side were some automated kiosks to check in.

The kind people at the desk helped me check in at the kiosks and I took a seat.  There were only a few people in the room, and there wasn't anything close to privacy so you could hear every word that was being said by the people who were at the service windows.  One person in particular caught my attention.  From behind I could only see that she was blond but she spoke with a Russian accent.  After I had been sitting there for only a few minutes she suddenly burst out, "No you are not listening to me! I need help.  I'm so very tired." Her son, an adorable strawberry blonde boy with big blue eyes and about four years old, burst into loud sobs.  She patted him on the back and tried to comfort him.

Sitting in the row in front of me was a latino man in paint spattered jeans.  He started making funny clicking noises with his hands which got the little boy's attention.  First he stopped crying, then he stared in amazement.  He wiggled out of his mother's arms and walked over to the man who entertained him until it was his turn to go up to a window.  Then a gray haired lady talked to the little boy for a bit and then it was her turn to speak to someone so I took my turn and kept an eye on him while his mother continued to argue her case.  Then another man got out a children's book and read it to the little boy until his mother was ready to go.  She was so grateful to everyone for helping with her son.

We were all there because in some way or another we needed help.  Having to beg for assistance can make one feel so vulnerable, desperate, and alone.  It was amazing to see all those people supporting one another, giving help freely and without judgement or expectation of return.  It is times like these that I feel hopeful about humanity's chances of surviving its own greedy nature.

It came as no surprise to me that I was denied for Medicaid.  I knew it wasn't likely that I would qualify but what did surprise me is that the thing that disqualified me immediately is that I had more than $2,000 in my bank account.  Just like we don't like to treat people in America until they're already sick, we don't help people until they're already in trouble.

I faxed the letter of denial to the hospital's Patient Account Services and then I called the hospital again when I got home.  They said for the meanwhile there is nothing else I can do so now I'm just waiting to see if I get approval. I've also received a lot of advice from friends in the last few days (thanks Heather, Dheeraj, and Bonnie!) who are doing everything they can to help me sort out this problem.

I talked to the Program Chair again and told her what the surgeon said as well as what the college's staff in Financial Aid and Advising said.  I'm allowed to withdraw up to the first day of classes and get back all of the tuition, but she's agreed that I can continue to go for the first week weeks and if I need to she'll give me a hardship withdrawl.  I might not get the tuition back but it won't show as though I've failed any classes.  Before she'd said that if I signed up for the classes at all she wouldn't be able to give me a leave of absence after that, that'd I'd just be out of the program if I was too sick.This is a big relief because there really won't be any way to predict how well things will go with the surgery or even after the surgery so now I'll have a bigger buffer with which to decide if I can continue school.

Bowtiectomy Scheduled

The last few days have been so emotional (and busy) for me that I haven't been able to muster the energy to write about it until now.  After school two days ago I spoke to the program chair for my program.  I had hoped (but not expected) that she would offer support in getting through the end of this quarter and helping me to be able to be successful next quarter as well, but that is not the turn the conversation took at all.

She said that she didn't think I would be well enough to get through my classes next quarter and said I should drop out of the program and come back the following year.  I'm currently living off student loans so if I'm not well enough to continue to school I'll have to go back to work.  If I'm well enough to work I should be well enough for school, so it's the ultimate catch-22.  I told her I'd think about her concerns and talk to the surgeon about them.

Yesterday I saw the surgeon.  I wasn't sure what to think at first since he was dressed in scrubs with cowboy boots but he answered all of my questions thoroughly and thoughtfully.  He didn't seem like he was in a rush to get through my appointment.  I internet stalked him later and found out that he's been doing this for 15 years and has won multiple awards so I feel good on that count at least.  He essentially refuted all of the program chair's assertions about my health so as far as he is concerned I should not have a problem with returning to school next quarter.

After that he took my boyfriend and me to meet with the scheduler and this is where things got a bit too much for me.  In order to have the surgery and be able to return to school for the summer quarter I only have between June 14th and June 23rd to have the surgery and recover.  Unfortunately the surgeon doesn't do operations on Fridays so we settled on Monday, June 17th as the day my thyroid and I will forever part ways (unless I have some mutant genes that regrow body parts... Hey, it could happen!).  This gives me basically six days to recover before I have to start attending classes or face being dropped from the program.  No pressure, right?

Next came the part of the conversation that really knocked me over, emotionally. Although I have applied for both medicaid through the state and charity care through the hospital I still haven't received an answer from either about whether I will get any assistance.*  Due to this I was told to expect a all sometime in the next week or so detailing the full cost of the surgery.

The scheduler said that without anything settled they would expect me to put down a "large chunk of money" as  down payment on my surgery.  I responded with "what's large to you?"  Her answer: $4,000 - $8.000.  I know I'm poor. I know I don't have health insurance and that I'm basically screwed financially but it felt like being punched in the gut to have to hear it so plainly.  Thankfully she was very kind and understanding. She said if I don't have anything sorted out by the 14th of June I should call her.  I don't know what that will mean if it gets to that point.

After that things took a turn for the slightly more mundane.  Although I've already had several ultrasounds of my neck that showed no enlarged lymph nodes, I still needed a CT to definitively rule it out.  If they don't have to take any lymph nodes the risk of complications from the surgery will be decreased quite a lot.  I'm not sure if/when I'll get the results.  I'll be on the phone and/or sitting in office a lot tomorrow to try to sort things out.

We left the ENT offices and headed off across the sky bridge to Radiology.  They stuck an IV in my arm so they could give me radioactive contrast during the CT scan.  I'm not a huge fan of needles but I donate blood when I can and I've endured a lot of blood letting and random injections in the name of my health in the past.  I will tell you right now that IV needles are the worst.  They're huge and it seems like they're always determined to wedge it into a joint before they're satisfied that it's really in there.

IV in arm, we headed back to the scanner and they put me on the table.  I'd had radioactive contrast with an MRI many years ago and one of the things they warn you is that it causes warmth throughout your body but especially in your crotch which can make you feel like you've wet your pants.  With my MRI that's pretty much what it felt like.  With the CT I felt like someone had poured liquid fire in my veins and then set my pants on fire just to make sure I was good and uncomfortable.

Afterward I dropped my boyfriend off at school so he could go to his last class and drove home in rush hour traffic alone.  Right now I really appreciate the every day things that let me think about anything but cancer: Driving in traffic, making dinner, doing homework, even going for a walk in the evening even though this generally wears me out to the point of uselessness.

At 3 am, after only a few hours of sleep I suddenly found myself wide awake in the grip of a full force anxiety attack.  Up until this point I hadn't actually shed any tears over my predicament.  I have been far too busy just trying to keep track of everything that I need to do for my health while still attending classes, taking tests, and doing homework.  I would like to say I had a good cry, felt much better, and slept like a baby, but I didn't.  I still feel so tightly wound and exhausted that I only shed about three tears before I got out of bed and went to the living room to do more research on what I need to be doing.

I'm sure there's going to be a point when that dam will fully break and I'll have a good old-fashioned, ugly (with snot and loud sobs) cry but right now I still feel like I'm running from the wolves.  For now, I have June 17th to both dread and look forward to.  It is sadly pathetic that curing cancer will likely be the easiest part of this ordeal for me.

So.. yeah.  That was a bit heavy.  To lighten things up I'd like to do an artists rendition of my upcoming surgery.**

See!  It's just weird without the bowtie.  Is it strange to preemptively miss an organ you went your whole life without really thinking about until someone told you they were going to cut it out because it's harboring homicidal tumors?
__________

* I also tried to apply for the State's high risk insurance pool that was created to bridge the gap until Obamacare kicks in but it turns out they stopped accepting applications back in March due to lack of funding from congress.  According to their site, they've had so many critically ill people sign up that they're unable to accept anyone else or they may not be able to cover the existing applicants to 2014.  If anyone is still saying that we don't need health care reform, that right there should give them pause.

** Aplogies to any non-Dr. Who fans. You're probably not going to get why this is funny to me.  Actually, even if you are a fan you might not get why it's funny And That's Okay.

Letting Go

Over the past few days since my diagnosis I've heard a lot of variations of, "You seem to be taking it rather well." Whenever people come to me for advice I tell them that there are always options, we just tend to ignore the ones that seem like more work.  I could choose to dissolve into a puddle of fear and anger but when I did finally pull myself together my whole messy life would still be there.  I'd still have cancer.  I'd still have medical expenses, laundry, and homework.  

I'm no saint; I'm not taking this "well.". I have been having a mini nuclear meltdown about six times a day.  I want to beat my fists against a wall and scream, "Why?!"  The problem is that I'm so busy walking the tight rope of my life that I've only got a few minutes to spare on it.  I eat a cookie or steal a hug from my boyfriend, and wait for my brain to stop feeling like a caged bird desperate to fly away.  I breathe.  I rationalize a lot.

Im not a buddhist but i do have to give them credit for having it together in the "being a well adjusted human" department.  I've been reading some Buddhist teachings lately on learning to be comfortable in uncertainty, and even leaning into the discomfort it creates.  It makes me feel like someone has asked me to try to breathe water:  Just stick your head under and take in a nice deep breath.  I'm not sure if I'm quite ready for that spiritual enlightenment.

Being sick at this point in my life isn't just about my health in the present moment. Today after class I will be talking to my program chair about whether I'll be able to continue school next quarter.  The program has very strict requirements that I might not be able to meet if things don't go well with the surgery and recovery.  I also don't know if I'll be able to afford to continue to be in school.  Obviously no one wants to be a jerk to the chick with cancer, but if they feel like I can't complete the program they'll have to make that call.

The thought of having something so completely out of my control ruin all the work I've put into the last four years of my life makes me so angry I want to snap at the world and then curl up in bed and cry.  The thought of having my fourth surgery in eight years scares me so much I want to pull the covers over my head and stay there for a week or more.  The thought of being completely, utterly destitute terrifies me in such a visceral way that it is hard to articulate.

The fear and anger, though, get in the way of the work I need to be doing to get through this.  I have to give in to them every now and then or I might explode, but they don't serve a useful purpose.  I can't do anything about the uncertainty of these times in my life so I have to focus on what I can do to keep my balance while everything sorts itself out.  Like it or not, most of what I need right now is for time to pass so things can happen.  My job is to keep it together.

A friend of mine once told me about another Buddhist teaching which is about letting go of outcomes. It means doing the best you can but not because you think that will get you what you want.  So if I look calm about the fact that I have cancer, or I don't seem appropriately devastated, it's because I'm working on putting one foot in front of the other and trusting that there is solid ground on the other side.  What form that solid ground will take is out of my hands, but getting there is all on me.

This is what cancer looks like

Here are the ultrasound images of my thyroid that were taken at school.  The thyroid sits horizontally over the trachea like a saddle with the two lobes connected by a thin isthmus.  The cancer nodule is in the top part of the left lobe.  It measures about 2 cm x 1.25 cm.  

I know most people don't know how to "read" an ultrasound so let me give you a quick primer.  Ultrasound works be displaying the echoes of ultrasound (sound above the human range of hearing).  Different types of tissue reflect and absorb the sound differently so the returning echoes have different strengths and the computer converts the strength of the echo to the brightness of the spot on the screen.  The brighter the spot, the stronger the returned echo.  There is more physics involved than this but this is the basic principle.  

The displayed image is a cross section of the area being scanned, so imagine its like someone took a thin slice out and that's all you see.  It sort of like if you had a stack of pages with each page showing only what you can see at that level of the body and you pulled out one page from the whole stack to look at.  

This first picture is a shot horizontally through the left side of the thyroid.  It can be a little confusing at first but when you look at an ultrasound image, the patients left is on the right side and their right is on the left. I imagine it is like they are standing in front of me so everything is mirrored.  The mass is so big there is only a small amount of normal tissue left on this side.  Normally the thyroid has a very fine grain, uniform texture that is medium brightness.  The cancerous mass is much darker with a mixed appearance.  The bright spots are calcifications which in many cases is indicative of cancer. This machine is old and the printouts aren't very clear but at the imaging clinic where I had the official ultrasounds done it looked like it was packed with glitter.

This is a shot vertically through the left lobe in the center of the mass.  There is also a small cyst here.  Smooth, round cysts are always benign.  I have one on the right side,too (not pictured). One of the other signs of potential malignancy is how well defined and smooth the borders are.  You can clearly see the borders on the cyst and they're smooth all the way around.  The mass has jagged borders that fade into the surrounding tissue which hints that it is infiltrating the normal tissue.

Our printers only print in greyscale or I'd have a cool picture of the Color Doppler which is used to show blood flow.  The mass has a very significant blood supply which means at present it is alive and well with plenty of blood to keep growing.

Someone asked me why, if the cancer was caught "early", they can't just take out the side with the cancer instead of taking out the whole thyroid.  They will do that sometimes, but only if it is under 1 cm in diameter.  This type of cancer likes to spread throughout the thyroid so at this size it's likely already seeded to the other side but it's not big enough to see on ultrasound yet.  The other reason is that if they give me the iodine radiation treatment it will kill the remaining thyroid tissue anyway or if it doesn't it will increase the risk of cancer in the remaining thyroid tissue.

Hi, I Have Thyroid Cancer

I wonder how long it's going to take for that thought to stop feeling weird.  It all seems a bit surreal at the moment.  This week has felt incredibly long.  On Monday I was waiting to hear back from my doctor about being referred for a biopsy and by Friday I had cancer. It's funny when your brain sort of stalls out and you get this stray random though, like when the doctor is telling you that you have thyroid cancer and you think, "Crap, I don't even know what the ribbon for that looks like."

I feel scared and tired.  Even if I know it's not likely to turn out badly, it's still going to be hard.  I know I will win this fight, I just wish I didn't have to get in the ring to begin with. I'm still having a hard time accepting that I even have cancer despite having seen the ultrasounds and biopsy results.  It's not like other illnesses where you're in a lot of pain or feeling very sick.  Other than feeling tired and dizzy all the time I feel basically normal, not like a person who needs surgery and radiation treatment.

This is why cancers of any type are so bad.  At school we're taught if someone has  mass and no pain, think cancer.  Cancer sneaks up on you.  It hangs out where you don't see it, and sometimes don't even feel it and then one day it jumps out and tries to kill you.  Well, not this time!  Clearly the universe has got my back since it was caught before it could do its worst.  There are times in life when you really feel like you dodged a bullet: You didn't get on that bus that day, you left five minutes late for work, you decided to take the long way home, and later you find out that something bad happened that missed you by inches.  I feel just like that.

Cancer Bunnies

And Other Reasons Why Having Cancer Doesn't Suck as Much as It Could

"It is gratitude that makes us joyful." - Brother David Steindl-Rast

Yesterday a lot of people told me I seemed to be taking things pretty well.  I think shock does that to a person.  I woke up this morning feeling a bit heavy hearted about the enormity of what I will have to go through in the next few weeks so I want to take a little time to focus on things that have been keeping my spirits up in the last day or so.

• Before I had my biopsy I asked my boyfriend if I could have a bunny if I had cancer to which he characteristically replied, "Uh.... sure." While we were waiting in the endocrinologist's office for The News he asked how I was feeling to which I replied, "Well either I don't have cancer, or I get a bunny so it's sort of win-win." I have since been demanding to know when I'll be getting my cancer bunny.
• My friends discussing where my boyfriend is going to go to the bathroom during my radiation treatment because we only have one bathroom and I'm not supposed to share a toilet while I'm on the treatment. So far the ideas are ranging from composting toilets to chamber pots.
• Being told that I should eat whatever I want because calories don't count on days you get told you have cancer. I had cookies and donuts for dinner last night.
• Running jokes about how I have the boring cancer that you don't get any "cancer perks" for having. I took a test today and I have a ton of homework to do this weekend.
• Lastly, all the support from my friends, family, and even random strangers. When you are sick no one else can go through being sick for you, but it's not a one person journey.

And Then the Doctor Said...

"You have papillary thyroid carcinoma."

It all started a few weeks ago.  For the last nine months I've been a student in a diagnostic medical ultrasound program.  In the grand tradition of medical field students, we practice on each other most often.  This means that by the time you get through your junior year you've been scanned twice every week, covering most of the major organs. I call it the "30,000 mile tune up".  It's pretty easy to become a hypochondriac when you start seeing all sorts of things inside you that you didn't know you were there, but for the most part I haven't worried about it because even the "common" cancers are rare.

A couple weeks ago we started learning how to scan thyroids.  For those not familiar, it's a gland that sits in the neck in front of your trachea and esophagus. Being scanned is pretty boring so I either study or tend do zone out, then out of no where the instructor comes up behind my partner and asks, "What's that?"  Both of my instructors looked at it and concluded that I "really need to get that look at".  Fast forward a week and I'm lying in a "real" ultrasound suite talking to the radiologist about what she sees on the screen. She took one look and said, "It's papillary carcinoma" and I'm thinking "Ugh! I'm too busy to be sick."

My doctor (Dr. Morrison! who is fantastic) referred me to an endocrinologist for a fine needle aspiration.  He tried to reassure me by giving me the statistics (which I'd already learned in school) for how unlikely it was that I might have cancer, but then again that radiologist had seemed pretty certain.  The fine needle aspiration was not fun. The "nodule", as they call it, is on the back side of the thyroid so they basically had to push all the way through my neck. It felt a lot like someone trying to push a pencil through my trachea.  I was so lucky that my friend Lacresha was there to hold my hand.

Afterward I went home and passed out.  The next day I woke up feeling like I'd been punched in the throat. I feel like there was a bit of false advertising there with respect to just how bad I'd feel the next day. Let's just say that in a bar fight, I'm probably not the person you want on your side. I'm not as tough as I look.

I was lying on the couch the next morning generally feeling liked I'd lost a UFC match when someone from the endocrinologist's office called.  There are certain things I've learned over the years to be highly suspicious of and two of those are incredibly quick responses to medical tests and news that can't be given over the phone.  When they asked me to come in the next day a sense of dread settled into my stomach.  I'd spent the last week feeling like Schrodinger's Cancer Patient, a person both simultaneously with and without cancer while I'd waited for the definitive proof, but this settled it for me.  I knew the news would not be good.

The next day at the doctor's office, my boyfriend, my friend Lacresha, and I were shown into a room. The nurse, Katie (who is also fantastic) said, "The doctor will be in to see you and then I'll be back afterward."  Oh. Crap.  Let's just say it's not good if the nurse needs to see you.  When you have a biopsy there's a number of possible outcomes:  You don't have cancer, your biopsy was inconclusive and they want to redo it, you don't have cancer but you have premalignant cells which means you get to look forward to future biopsies, or you have cancer and the shit has hit the fan.  Aside from the first option, none of these were prospects I really wanted to entertain, but it was certain to be one of the latter three because nurses don't see you after the doctor unless there's a "next step" to engage in.

The doctor showed up a few minutes later and started with, "I want you to know how glad I am that you came to see me."  Yep, screwed.  He went on to talk about how fortuitous it was that I was in sonography school, and really it's hard not to believe that there isn't some synchronicity to the universe.  Because of the position of the nodule, it would have been years before it became palpable and although I had been getting sick a lot and feeling worn down, it's easy to attribute that to my other health problems.  And then the doctor said, "You have papillary thyroid carcinoma."

So what's next?  I'm meeting with an oncologist next week to discuss scheduling my surgery in the next few weeks.  They want to do another ultrasound or CT to doubly confirm that there is no lymph node involvement in the neck area as those would need to come out at the same time.  Then they'll cut me open and take out my bowtie (mine and my classmates' nickname for the thyroid).  A few weeks after the surgery they'll go over the results and determine whether I need radiation therapy.  The endocrinologist said that although there's always a chance they'll decide again it's quite likely they'll want to do it, so start placing your bets now on which super power I get from being an irradiated human.  About a year after that they'll do a test for something called thyroglobulin which is an incredibly sensitive test for papillary thyroid cancer.  If that's clear, I'm cured!

I'll have to take thyroid hormone medication for the rest of my life since I'll no longer have a way to produce it on my own but other than the pills and a scar on my neck (that I'm already planning on saying I got from an attempted mugging)  I'll be just like everyone else, sans my bowtie, which is sad because everyone knows bowties are cool.