Think With Your Hearts

The events of the past few days have left me sad and hurt, not because of what some politician is trying to do to me in the name of greed and power, but because of what people who have told me they love and care about me have said how they really feel through their words and actions.

In my last post, I mentioned that I was cleared of metastatic cancer, but I am still not cured of cancer.  I won't be considered cured by my doctors until it has been a year without evidence of recurrence.  Further more, in order to save me from cancer, they had to give me a life-long incredibly serious condition that requires constant medication, testing, and maintenance by doctors.

I have been so unbelievably lucky thus far in that I was given charity insurance to cover my expenses, but that charity insurance was only for the first six months.  I have been in tears several times this past week wondering how I'm going to be able to pay for monthly blood tests and all the other tests and doctor's visits I'll need for the next six months, plus a life time of testing and medication.

When the surgeon took out my thyroid he took away my ability to regulate my metabolism.  Without medication, I will die.  With improper medication I will have a drastically shortened life expectancy.  With even slightly off medication, which is what I have been suffering through with the last month, I will be disabled.

When I was first diagnosed, people told me how afraid they were for me, not just that I would die but that as a full-time college student with no health insurance that I wouldn't be able to afford to get treated.  Until the charity offered to cover my initial expenses, I even considered foregoing the surgery for a year or two until I could get health insurance, even though it would have increased the risk of the cancer going metastatic or simply cutting off the blood to my brain.

I was incredibly blessed, but I want you to consider another scenario.  If my cancer had not been so easily treated, if my situation was more severe right now, if I weren't already dead I would be praying to die as quickly as possible so as to cost my loved ones the least amount of money.  I might even be making the choice to suffer through the end.  I might have had to choose to die of a curable disease as so many people in this country do, because I couldn't afford to be healthy again.  Before the ACA, it would cost me more in a month to have health insurance than all of my other living expenses combined (over $1,200/month) if I could even find someone willing to cover my preexisting condition.

When you say you are against healthcare reform and the Affordable Care Act (aka Obamacare) this is what you are wishing for me.  You are thanking your lucky stars that I didn't have it worse but wishing if it had been worse that I would die as quickly as possible to save on medical costs.  This is what it means to me when you say it's not the right time for healthcare reform, this is what it means to me when you say the ACA is only for people who want handouts, this is what it means to me when you believe the lies that greedy people spread that we cannot afford healthcare for every American Citizen.  You are saying to me: In lieu of tremendous good fortune I wish you pain and suffering, and death.

If you truly loved, if you truly acted through and thought through love, you wouldn't wish this on me.  I wouldn't wish this on my worst enemy.  I wouldn't wish this on Gus, the 4 year old with a brain tumor, or the 23 year old kid who died of streppe throat.  I wouldn't wish this on you.

I implore you to please think with your hearts.  Think with love, with compassion for everyone because you will be surprised how many people you know whose life would be better if they could just afford to be healthy.  Our system is broken and it's not going to get better without change.  We have to change our hearts and our thinking.  We have to love one another more than we fear what greedy people tell us to fear.  I need healthcare reform.  So many people need this.  If you truly loved me, you would want this for me, not death and suffering.

Phase 3: Radiation Treatment (Part 2)

My radiation toothbrush.

I had meant to write this sooner, but this past week has been nothing short of exhausting. I've had to be very careful with what I do each do so as not to run out of energy before the necessities get taken care of.  As it turns out, I have some great news to share today so it's a good day to write this.

But first let's rewind...

Quarantine!

Last time I wrote I ended with me on my sofa, glowing like a lightbulb.  Because I was radioactive with enough juice to kill not only my cancer but any remaining thyroid cells, I was also dangerous to every living person around me.  In large doses I could have burned out their thyroid, or in small doses put them at increased risk for the thyroid cancer.  In order to protect my loved ones (including my cat) I had to do the following:

• Not travel for long periods of time with anyone for at least 2 days including cars, mass transit and airplanes.  

• Sleep in a separate bed for 4 nights.

• Flush the toilet twice after each time I used it and wash my hands thoroughly.

• Rinse the shower after every use.

• Minimize contact with other people for 4 days.

• Use separate towels and other linens for 4 days.

• Hand wash all of my dishes separately.

The two biggest dangers were sweat and saliva.  I had to be careful to keep anything that touched my skin separate from anything else so I kept all of my clothes and towels in a plastic garbage bag.  My boyfriend slept in the spare room, and so did the cat.  She was very put out by the fact that I as ignoring her all week.  We arranged it so that my boyfriend was always showering first and me afterward so it would be as long as possible between shared uses.  I would let the water run for 10-15 minutes after I got out just to make sure it was good and rinsed.

I also bought a Hello Kitty toothbrush at the dollar store to use during this time and a new bath poof to replace my current one once the 4 days was over. I used separate everything: separate hand towels, separate dish towels, separate beds, separate sides of the living room.  I tried to avoid using anything disposable like napkins or plastic forks. Even though my dose was just a little over a quarter of the normal dose, it  is always better to be safe than sorry.

Then on Sunday I had Radiation Cleaning Day.  I stripped the bed and washed all of the linens, washed all of the clothes and towels I'd worn for the past 4 days, and bagged up any items like the toothbrush and bath poof.  Those items will sit in a Ziploc bag for the next month before they are safe to throw away.

Honestly, I had it relatively easy even though sleeping in separate rooms sucked and having to always be watching what I did with my dishes and everything else I touched. It used to be that they would quarantine you for a week with no contact with anyone and you had to collect all your bodily waste during that time so they could store it in a lead lined box for a month before it was safe to dispose.  These days it's considered safe to go through the sewage system so if I had to use something disposable I either had to flush it, wash it down the sink or store it in a plastic bag for a month.

Full Body Scan

Yesterday was both the two month mark since my thyroidectomy and my full body scan. The idea with the scan is that if there is cancerous cells anywhere else in the body taking up the radiation it would light up like Christmas.  The machine looked similar to an MRI, but about half the size.  I could feel the sides of the tube when they put me in. The worst, though, was that after being put in the tube they lower a plate to within about a quarter of an inch of my face.  I am claustrophobic so this was not awesome, but  I can usually logic my way through the panic.  I kept my eyes shut and that seemed to help but the entire left side of my face was twitching with the effort.

They did two scans.  The first was twenty minutes and went from my head down to my waist.  The second they had me lay with my head tilted back and they focused just on my neck.  After the radiologist approved the images I hopped off the table and headed back home.

One of the things I love about Virginia Mason is that they are very up on the current technology.  Instead of waiting a week to get my test results, they're posted to a website for patients as soon as they're submitted.  I checked my messages today and this is what I saw:

"Your scan shows no evidence of any metastatic thyroid cancer. Excellent news."

So that's it!  I'm done with cancer treatments for the next several months.  I am still not "cancer free" as of yet, but in a year I hope to get that news, too.  I also received the results of my thyrogen test that was done before the radiation.  It showed that my thyroglobulin levels were already very low which was a good sign.  They also found some antibodies that indicated I probably had some sort of autoimmune disease at the time my thyroid was removed.  It's a strange consolation in that if it had stayed I would have had more severe problems in the future even without the cancer.

Phase 3: Radiation Treatment (Part 1)

Bonus points if you recognize this movie.

The Morning Of

My day started with being woken up an hour before my alarm went off by the sound of my landlord ripping up our neighbor's deck, which shares a wall with our bedroom.   He'll be doing our deck tomorrow and the next day so I'll get to look forward to that for the next few days (and also not being able to leave my house because the deck is our "front porch" and is about 5' off the ground at the doors.  I told my boyfriend that we should just hang a rope ladder off the back deck (also 5' off the ground) and call it a our tree fort.

As I lay in bed wishing I could get back to sleep, my phone rang.  It was the Nuclear Medicine department at Virginia Mason.  Remember that pointless-but-necessary blood test I had on Monday to check if I was pregnant?  Well, it turns out according to state law the radiation must be administered within 48 hours of the test.  I had the test at 10 a.m. on Monday.  My appointment today was scheduled for 11:30 a.m., putting it at 49.5 hours from the time of the test. Thus I would have to go in early to have the test redone because at the time they called (8:45 a.m.) there was no way we were going to get into Seattle by 10 a.m.  This also meant breakfast was cancelled because I needed to not have eaten within 2 hours of the tests/radiation.

I took my thyroid pill and showered.  As I was getting dressed my endocrinologist called.  When I was on the phone with Katie on Monday about the injection snafu I mentioned that I had been feeling very unwell (hair falling out, sick to my stomach, exhausted, etc.) and she promised to pass a note on to him.  We spoke briefly about my symptoms and he ordered some tests so they could check my thyroid hormone levels.  At 10:30 a.m.  I said a silent prayer that I could maintain a pleasant demeanor and off we went to the hospital.

At the Hospital

We arrived at the hospital around 11 a.m., but the parking garage for the building we needed to go to was full so we had to circle the block and go back to another garage under a different building and walk the block back to where we needed to be.  Getting checked in went quickly but for some reason the elevators weren't coming (it turns out security had locked them all down) so after waiting several minutes we gave up and took the stairs to the fifth floor.

When we got there no receptionist was there so I signed in at the desk and sat down.  A little while later the receptionist returned and called my name.  She checked me in (again) and told me that I was early for my appointment so I'd have to wait.  I informed her that I had been called and asked to come early because they had made a mistake and needed to redo one of my tests.  She asked us to have a seat again but I could hear her on the phone talking.  From the sound of the conversation, it seemed like at the very least she didn't know what was going on and whomever she was speaking to might not either.  At this point I felt very much understanding of the term "murderous rage."

Finally, after waiting for another 15 minutes we were called back.  By the reaction I got from the tech, I could tell I had a look on my face that said exactly how I felt.  I always feel bad when I take my angst out on others so I apologized for looking less than thrilled and told her that it had been a rough morning, and that I was both starving and incredibly tired.  She gave me the paperwork I needed for the pregnancy test that I needed to retake and sent me up to the sixth floor.  My boyfriend and I agreed to "f' the elevators" and take the stairs, which is when we bumped into security guards calling "all clear" on the elevators.

Up on the sixth floor we found the lab.  I handed the paperwork over to the person at the desk and let her know that my endocrinologist had ordered additional labs which I would also like to get done with.  The waiting room was packed but the staff was quick. Within ten minutes I was in a room with Amanuel, the portly phlebotomist. There were so many tests ordered that he had to make a check list.  In all, he took five vials of blood.

Then he told me I needed to pee in not one, but two cups.  I told him I wasn't sure I had two cups in me so he grabbed one cup and said, "Fill this one the most, then this one only half as much." Sure, no problem Amanuel!  I won't go into details, but let's just say I rocked this little Lab Test Game Show.

Off we went back to the fifth floor.  I told the receptionist we had returned. I was expecting a wait because we were told it would take 45 minutes to process the tests, but shortly thereafter Yuri the Technician showed up and introduced himself.  He said that the situation was the radiologists were in a conference and wouldn't be back until 1 p.m. and that the radioactive material needed to be brought over from another building. Plus they were still waiting on the test results. The other tech from earlier had let him know I was starving so he said I should go get a light snack and come back at 1 p.m.

I was thrilled.  I dragged my boyfriend off to the 4th floor cafeteria where he got a roast beef sub and a frappuccino, and I got a banana and apple juice because I was still on my low-iodine diet.  Ladies and gents, I can't tell you the difference a banana can make to a person's mood when they haven't eaten in 18 hours.  I instantly felt about 100 times less likely to kill someone with my mind, if such things were possible.  With bellies somewhat satiated we headed back up stairs again.

The Main Event

Back in the waiting room, Yuri fetched us and took us back to meet Dr. Lee, a middle aged blonde, and Dr. Kim a younger Korean man.  They were both friendly and personable.  They ran through the information on the consent forms with us, explained what to do with my toothbrush (more on that later), and how the procedure was going to go.  Basically the only advice they had was don't put the radioactive pill in your hand, shoot it and drink the water.

Once they were done getting my consent, they sent my boyfriend back to the waiting room and took me off to the special shielded room for the administering of radioactive material.  Yuri had me put on a pair of gloves, then he pulled the radioactive pill out of some contraption.  The glass vial containing the pill was in a large metal cup.  He extracted the vial, removed the stopper and handed it to me.  I tipped it up onto my tongue then gulped the water.  He asked for the gloves back, told me to call the number on the paper if anything felt wrong, and off I went.  After the four hours of chaos it took to get to that point, it was mildly anticlimactic.  

I gathered my boyfriend from the waiting room.  We took the stairs down to the lobby and exited out a side door.  We managed to walk the block back to the other building, take the elevator down to the 4th level of the parking garage, and get in the car before it hit me.  It started as a burning sensation in my neck before spreading throughout my body.  Three hours later, I still feel the rosy glow of radiation as though I am laying out on a beach in 115 degree weather and not inside my apartment on a cloudy day.

The radiation will do its job within the next 24 hours, by which time most of it will have left my system. For the next 4 days I will be highly radioactive.  In about eight days I should be safe to be around again, but for the next 80 days I still might set off bomb detectors at the airport.  

Despite how difficult the past ten days have been with the crazy diet and the exhaustion, this is so much better than it could have been.  The next step from here is a full body scan in one week which I feel fairly confident will show no additional disease.  I'll also be waiting on the results of the blood tests related to my thyroid hormone levels which hopefully will explain why I've felt so miserable.  There's some concern that I might have an infection or some other problem because of the pain and swelling I've been having  so I am to call the surgeon and make an appointment with him as well.  For now, though, I'm enjoying eating whatever I feel like and then I'm going to go sleep.

Thyrogen Injection #1

I was scheduled to have my first thyrogen injection this morning.  I'm going to go meta and talk about the reason for the injection first and then I'll give the play-by-play for those of you who are on the edge of your seats with popcorn poised between bucket and mouth, eager to know how I overcame this mornings tribulations.

The reasoning behind the thyrogen basically goes like this:

• They took out my thyroid but there may be still some cancer cells working somewhere.
• Those cancer cells are a lot like normal thyroid cells and will respond to the same signals
• Because I don't have a thyroid I take hormone replacement medication daily
• SinceI have enough of the right hormone in my body, my brain isn't signaling the need to make hormones.
• Thus any cancer cells are also not thinking "hey I should try to make some hormones"
• We want the cancer cells to fire up the production line because then they'll want iodine, a key component in thyroid hormones, so when we introduce irradiated iodine to my system they'll willingly drink the kool-aid as it were.

Most people think that the brain is what gets all of the work in the body done, and to some degree this is correct.  The brain is like the Big Boss.  He comes in an makes a bunch of snap decisions and then leaves it to the middle managers, the organs of the endocrine system, to get the work done. They put out work orders in the form of hormones and these hormones act as long standing orders to the body telling individual cells what functions to perform.  

Thyrogen tells cells with the right receptor to make thyroid hormones, but it will only be released if the brain says the levels are low.  However, the system can be subverted by adding a massive dose of thyrogen via injection.  Normally this would be Not a Nice Thing but since I don't have a thyroid it has very little affect on me (other than another spontaneous nap).  

The upshot is that with thyrogen they can prime the cancer cells to take up the iodine without me having to stop my thyroid medication.  In the past I would have had to stop my hormone medication for a week and allow my body to naturally produce thyrogen, but stopping the medication makes you feel like serious butt because thyroid hormones control metabolism.  Without metabolism you have no energy and you turn into a cranky sloth.

So that's why I got up at 8 a.m. this morning to go get stuck with needles.  Now here's what happened...

My nurse Katie kindly scheduled to have my injections done at the clinic here in town rather than making me have to drive in to Seattle in rush hour traffic.  I walked into the clinic 15 minutes before my appointment because I can never trust these things to go well.  At the receptionist desk I was told they didn't have me on the schedule for that day.  Initiate panic.  I'd just spent the last week on my No Chocolate Makes Me Angry diet and Katie had told me they have to special order the thyrogen because it is quite expensive.  

I was asked to take a seat so I sat as close to the desk as I could. From the conversation going on behind the desk I gathered that they had in fact ordered the medication (sigh of relief) but that by some mistake my appointment had never been made.  Thankfully nurses are not like doctors.  Nurses have this magic ability to make time out of nothing so the wonderful Judy showed up shortly thereafter to apologize for the mixup and escort me back into the room.

Since I wasn't on the schedule, no preparations had been made in advance and thyrogen injections aren't a normal thing, I'm guessing by the fact that it was special ordered.  I probably should have been more concerned by Nurse Judy having to read the packaging insert and the side of the box to figure out what to do with it but hey, we've all been there, amiright, ladies?  In short order she figured it out -- or I trust that she did because she seemed confident, and that's all that matters in most cases.

Thyrogen has to be injected in a big muscle so I got to drop my pants (a few inches) for this one.  It's not like in the movies where they aim right for the cheeks.  It actually goes in at about the level of the hip bones.  I've gotten a lot of shots and the worst are the ones that burn for a long time after. Thankfully this was not that sort.  So after a little exciting 8:45 am panic all ended well. They've got me on the schedule for tomorrow morning so I get to do this all over again.

I also got an extra needle stick this morning that I won't get tomorrow.  It was a blood test for hCG (human choriogonadatropin) which is the hormone produce by the placenta, e.g. a pregnancy test.  This is so they don't irradiate anyone who is pregnant but doesn't know.  Given my medical history, I already know it'll be negative, but it's nice to know they take all the precautions.

And now I think I shall have another nap.

Pit of Despair

I am so thankful to the Powers That Be that my life took a direction that allowed me to have my cancer diagnosed.  I am also thankful for the kindness of that path also including a thorough education in my particular cancer so that when I was diagnosed it was not as terrifying as it could have been.  I am thankful for all of the love and support that I have had for the last several months.  I have so much to be grateful for, that I feel bad for whining about what I don't have, but friends this week has been hard.

The farther I get from my surgery, the more run down I feel.  I'm not spontaneously napping like I was, but at this point it is largely due to sheer will to stay awake and try to be functional all day.  I think this week has highlighted that for me because being on a special diet where I can eat hardly anything ready-made has shown me how little energy I truly have.  I can cook and bake almost anything but yesterday I broke down and bought a box of unsalted crackers and unsalted peanut butter because I am simply too tired to feed myself properly.

I am sure most people would say, "Duh, you're 7 week out from a major surgery." I have never been good at cutting myself slack, and that is part of it, but the bigger part is that I went into all of this not with the fear of dying from cancer but the fear of a life spent on medication for my missing thyroid.  Over the past seven weeks I've gotten gradually more worn down, my hair is falling out, and I feel sick to my stomach frequently.  I spent five years of my twenties fighting endometriosis.  I don't have the time or the energy to spend my thirties fighting the after effects of my cancer treatment.

I couple of weeks ago I made a very hard decision which is that I will not be returning to my program at school. There are many, many reasons for this but not the least of which that the instructor for most of my classes was showing up to lectures and reading out of the book to us because she either does not know the material, can't teach, or both.  I already wasted a lot of time and money and I cannot conscience wasting even more paying to not get and education.  This has been a great weight off my mind and if it wasn't for the fact that I got diagnosed with cancer because of being in school I would wish I had stopped sooner.

Next week I'll be having my radiation treatment and by the end of August I'll turn 33.  After that point I need to seriously consider what I am going to do about financially supporting myself.  I am so tired the thought brings me to tears.  I am slightly failing at being an unemployed faux-house wife given that I do not even have the energy to keep our apartment clean or even cook a real dinner every night.  How I am going to manage all the aspects of daily living and a full-time job again I cannot fathom.  I have lost so much time and money to being sick that I am not sure how I am going to recover my life.  I feel like I have lost years of my life.

My Low Iodine Diet

Next week I have to start my low-iodine diet or as I call it "The Diet of Sadness."  This is so that when I take the radioactive iodine the cancer cells will gobble it up and die, basically.  The "diet" is a list of things I'm not supposed to eat including:

• iodized salt/sea salt
• soy products (soy sauce, soy milk, tofu, etc.)
• dairy products (milk, cheese, cream, yogurt, butter, ice cream)
• seafood (fish, shellfish, seaweed, kelp)
• cured or corned foods (ham, corned beef, sauerkraut)
• eggs
• chocolate
• molasses
• bread products that contain iodinate dough conditioners
• commercial vitamins
• food that contains red food dye (especially FD&C #3)

It also warns not to eat out at restaurants since you can't know what they put in it. This list basically excludes 95% of what I know how to cook.  I am dreading a whole week without chocolate, ice cream, or cheese. Essentially what I can eat is fresh meat and poultry, and fresh fruits and veggies provided that I don't add anything from the restricted list (like store bought salad dressing).  

The list they gave me seems remarkably sparse given the variety of foods people eat so I did some digging around and came up with this list from the NIH instead. There are some conflicts with the above list so I'm going to do my best to avoid anything in the "avoid" lists from both of them.  I've started digging through all the recipes I've ever saved on Pinterest or Foodgawker in hopes of finding suitable recipes to replace my normal diet.  The only good thing is that both my zucchini and yellow squash have started producing like crazy.

Other than panicking about the impending chocolate embargo, I'm doing okay most days.  Last week my neck muscles hurt again for a couple of days and the incision is still tender.  I'm still having to take a nap most days and I feel exhausted much of the time which is frustrating.  More than anything I want to be well enough to exercise and feel healthy again.

Status Update

Yesterday was three weeks since the surgery, although it has felt like much longer to me.  My voice is still slowly improving but some days it gets so weak I can't speak at a normal volume.  I made the mistake of going on a bike ride a few days ago and since then my neck has hurt quite a lot and my chest feels like I have been coughing hard even though I haven't been so I am back to convalescing which is not as fun as it might seem.  I'm finishing a novel every couple of days because I'm too tired to do anything but read most of the time.

The incision itself is healing up fairly well.  It is still sensitive, though.  I have to get up at the same time every morning to take my medications and then wait an hour before I can eat which I never thought would be a problem given that normally I'm awake by 8 am every day but waking up at 9 am has been a struggle.  I've had this strange burning sensation.  I don't feel warm but I feel like I'm in fire inside.  The medication is supposed to make me mildly hyperthyroid in order to shutdown the feedback loop that produces TSH  so maybe that is the cause.  

I got the letter today detailing my appointments.  I'll be having my radiation treatment starting on the 14th of August so I should be done with it just in time for my birthday.  Not having cancer anymore might possibly be the best present I've ever gotten.  On the 21st I'll have a whole body scan done looking to see if there are any more spots of cancer.  Essentially they'll be looking for spots where a lot of the radiation has collected which would indicated that the cells there are taking up the radiation with the iodine.  I am fairly confident they won't find anything, but right now the name of the game is, "better safe than sorry."  

In the meanwhile I've been trying to figure out what is going to happen after the radiation.  My medical expenses so far seem under control but the financial aid from the hospital won't pay rent or buy groceries so at some point before the year is out I need to figure out whether I'm going back to school or work.  I can't restart my program at school until next year, but I could take classes for a certificate until then, or I could try to find a job that would be flexible with respect to school.  I'm trying not to obsess about it because I really do still need this time to recover.