The T4 Roller Coaster

I haven't posted much here or on Facebook basically because I've felt too awful.  Around the time I had my radiation treatment I contacted my endocrinoligist to let him know I was having severe symptoms of fatigue and hair loss.  He ordered some blood tests but because it hadn't been long enough since the surgery and they were giving me shots in preparation for the radiation the results weren't very useful.

I waited a few weeks after the radiation treatment and then decided I needed to go back to the doctor.  By that point I had lost about half of my hair and I was also having tremors, heart palpiations, and extreme insomnia to the point that I was only sleeping a few hours a night but the worst was the exhaustion. I was only functional for about 4 hours out of any day and other than that I was either asleep or resting.  I used to walk for an hour or more most days but even a 15 minute walk could completely wipe me out for the day.

The experience of visiting the doctor again was frustrating.  He seemed put out that I would just make an appointment and show up.  I told him all of my symptoms and he indicated he thought I could be hypothyroid (not enough medication) and ordered blood tests for me.  The next day the results came in with my TSH being about .34 when it had been 1.43 prior to the surgery (meaning my body though there was more than enough T4).  Still the doctor recommended increasing my dosage of T4 to solve my "complaint" of fatigue.

After reading that, I didn't know what to do. I didn't think he was listening to me, I didn't think I was hypothyroid, and I didn't think increasing my dosage when my TSH was already so low and my T4 so high was going to fix how I was feeling.  I started doing some research and that's when I discovered that extreme fatigue, while usually associated with hypothyroidism, is also a symptom of hyperthyroidism.

I've said before that the thyroid hormones (T4 & T3) control metabolism but what is "metabolism?"  I think most people have some vague notions of what it is based on dieting and exercising fads, but really metabolism is the rate at which all of your cells do work.  The more T4 there is, the faster and harder your cells work.  This is really not good because you're wearing out your body, and can be especially hard on the heart which is really sensitive to T3.  This is why hyperthyroidism is bad for you.

The reason I'm losing my hair is because thyroid hormones also control growth.  Most people know that dogs shed their coat, well its the thyroid hormone that triggers that in them and if it's excessive enough it'll trigger it in humans as well, so basically I'm shedding.  How long the process will go on, I don't know, but just like a dog doesn't go all bald and mangy when they shed their winter coat, I also won't lose all of my hair (in theory).  When the doctor examined my scalp he saw a bunch of 1-3 cm hairs which means it's trying to grow back but it'll be about a year before I have a full head of hair again.

In the end, after doing my own research, I told the doctor that I thought his diagnosis and suggested treatment were wrong, that I was probably hyperthyroid and needed to reduce my medication.  He said he completely agreed and so about a month ago I started skipping one dose of my T4 each week.  Skipping that first pill felt like a miracle cure, I immediately felt better.  As the week wore on I started feeling worse again and then the next time I skipped a dose I felt even better so I knew I was on the right track.

It's taken awhile for the change in dosage to settle itself out.  I'm still losing hair and am down to about a third of the hair I started with before surgery.  Most of my severe symptoms have receded (the heart palpiptations, extreme fatigue, and insomnia) but I still feel tired and groggy all the time.  I did another blood test about two weeks ago that showed my TSH was up and my T4 was down, but I'll have to wait another month to be sure how the changes in my medication are going. I might need to slightly increase the dosage or maybe things will work themselves out.

I'm tired of not feeling normal and I'm worried that I'll never feel normal again.  It's been over five
months since my surgery and I haven't felt right since then.  I expected there to be some problems with getting the hormones sorted out but it is still frustrating. From doing a bit of online reading, most people said it took them about a year to start feeling normal, with lots of messing around with medications to get them right.

I'm also having to get used to a new way of eating.  Because of the hyperthyroidism I've been craving protein like crazy even though I've never been much of a meat eater.  I woke up one day and had leftover meatloaf for breakfast because I was craving meat so badly.   Eating now has a noticeable effect on how I'm feeling.  If I'm feeling tired and I eat I feel more energetic.  I've also started eating more sugary stuff which I avoided for years.  I have to be really careful to eat often and I find I have to avoid low calorie food because it doesn't give me enough energy to get through the day.

This is all counter to what I've been doing as far as eating for the last couple of years and it feels horrible to be putting so much high calorie food in my body but on the other hand my body seems to be loving it.  I can only hope that at the end of this ride I've settled out to a diet and a body I can live with.

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.

Teleportation, Definitely (or All About My Radiation Treatment)

Back when I was a kid most superheroes got their powers from radiation, so if I had to pick a superpower I would take teleportation hands down.  I could visit family whenever I wanted, travel the world without lengthy plane rides, and never commute for more than an instant to any job.  Some might say that flying is better, because, after all, life is about the journey not the destination but I'm afraid of heights and I don't see that getting better just because I suddenly can't fall off and die.  

I joke about these things because it keeps me from doing the other thing my brain wants me to do: be angry about it.  Per my post yesterday, before seeing the doctor I had resolved to give myself vacation until I was done with all of the treatment for the cancer.  Then I met with the endocrinologist and he said "six more weeks" (in a not ground hoggish way at all).  For those of you who don't know me personally I will explain:  I do not Not Do.  I am a Doer.  We Do.  All the time.  Waiting until nearly September to be done with an ordeal that started in May makes me twitchy.  I am planning to stick to the resolution only because for the first time in 32 years I am realizing how important it is to put myself first, and that it means "taking care of myself" not "taking care of every little detail of my life without a gasp for breath in between."

Before I get in to the why of "six more weeks" let's step back and talk about why I'll be having radiation treatment. First, it turns out that some cancers respond better to radiation and some better to chemotherapy. If it's bad enough of a cancer, you do both.  These therapies are not used for treating primary cancer (e.g. the original site).  It is used for treating metastases (cancer that has traveled from the primary site).  In the case of papillary thyroid carcinoma, it happens that radiation is the best, and specifically i131 radioactive iodine.  Given that I am relatively young to have cancer, it means there are plenty of years of life left for cancer to recur so even though the cancer was only stage 1 and there was no visible tumor in the central lymph node, it doesn't mean that there isn't still cancer somewhere as apparently it had begun invasion of the lymphatic system so an errant cell could be hanging out some where, ready to spring up a new tumor.

The normal thyroid cells use iodine to create the hormones produced by the thyroid, and they are the only cells in the body that normally take up iodine (with one exception explained below), but it happens that papillary carcinoma of the thyroid will also take up iodine because it is a mutation of the normal thyroid cells.  This means that irradiated iodine can be used to fairly accurately target the cancer anywhere in the body with minimal risk to the surrounding organs.

The endocrinologist gave three reasons he was recommending the radiation treatment. First and most importantly it will kill any remaining cancer even on a microscopic level.  Second, it will kill any remaining normal thyroid cells in the body which will ensure that I no longer naturally produce a protein called thyroglobulin which is made by thyroid cells, but also by the thyroid cancer.  This is important because thyroglobulin assays are an extremely sensitive predictor of recurrence so they will be able to say that I am cured..  Lastly, about a week after taking the treatment I'll be able to have a special type of imaging done that will show whether there is any cancer anywhere else.  These three things combined is what gives this treatment plan (surgery + radiation) such an amazingly high success rate for my type of cancer.

Unfortunately, as much as I would have liked to have downed that radioactive iodine today (words one thinks they will never utter), there is some preparation involved.  This is where that six weeks comes in.  In order to ensure that all of the cancer cells gobble up the radioactive iodine, first I have to do everything I can to make sure those cells are starving for it.  The day I met the surgeon for the first time he had me do a CT scan with radioactive contrast that contained iodine, a whole lot of it.  Even though it's already been a few weeks, it takes some time for these things to pass so it is the reasons I have to wait until mid-August to begin.

In addition here's the treatment plan the endocrinologist has laid out for me:

1. Today: Change from the short acting thyroid medication to a longer acting thyroid hormone replacement.  The brain normally produces Thyroid Stimulating Hormone (TSH) when thyroid hormone levels are low, but TSH is also stimulates cancer growth so they will make me slightly hyperthyroid with this medication in order to prevent the release of TSH.  Add bonus is that it will boost my metabolism so it'll be easier to lose some of the weight I've gained since starting college.
2. 14 Days Prior to Treatment: I'll have a urine test to check my iodine levels to ensure that all of the iodine contrast from the CT scan has left the system.
3. 7 Days Prior: I'll begin a low iodine diet to reduce the amount of iodine in my system as much as possible.  This diet excludes things like chocolate and most bread products, so expect some whinging on my part when I start this.
4. 2 and 1 days prior: Thyrogen injections.  This will hyperstimulate any thyroid/cancer cells remaining.  Apparently this stuff is extremely expensive so I'm doubly glad for the financial aid.
5. Treatment:  Consisting of showing up and taking radioactive iodine then waiting for my superpower to manifest, hopefully nothing lame.
6. 1 week post treatment: Gamma camera imaging to look for any metastases that were missed with the original CT scan.  Essentially, at this point of it's taking up the gamma radiation in large amounts it's probably a met.
7. 6 weeks post: Get blood drawn to make sure my thyroid hormones levels are correct.
8. 6 months post: Meet with the endocrinologist again to see how everything went. 

As for side effects, there are very few.  I might get nauseated from the dose of iodine which would be treated with anti-nausea meds.  It may also cause the parotid glands (salivary glands below the jaw) to swell and a bit of dry mouth for a week or so after the treatment. This is due to those glands and the thyroid gland coming from the same embryologic tissue so sometimes some of the paratoid gland cells will mistakenly have iodine receptors.  Owing to the fact that the cancer was caught early, the dose of radiation being recommended is fairly low so the risks (known and unknown) are also lower.

They don't schedule appointments more than four weeks out so I don't yet have an exact date for when I'll have the treatment itself, but it will be some time during the week of August 12th. This means I may be tentatively cancer free in time for my 33rd birthday on August 25th, although we won't know for certain until they test me a year later.  It's not diamonds or bunnies, but I'll take the gifts I'm given graciously.  For the next month I'll be continuing my recovery from surgery, my voice is still not completely back, and then it will be on to phase 3, in which we finally, totally, completely kick this cancer crap.

Love Letters & Radiation

I wanted to make at least part of this post about four days ago but between the heat and still recovering (as people keep reminding me) I have not had much energy for writing.  Physically I'm doing well.  I'm only taking naproxen for pain and most of the swelling is gone.  I'm able to eat pretty much anything I want, all though the smell of certain foods seems to turn my stomach.

Mentally, I think things are hitting me a little. I've been having PTSD style nightmares about having to leave school and what it means for my future.  I decided yesterday that until I finish with the radiation I am on vacation.  I'm not going to try to be a super productive person, or try to figure out what I'll be doing after that.  In all likelihood this will be the only vacation I get this year so I may as well take what has been given me and do something positive with it instead of adding more stress to the stress pile.

Right now I'm sitting in my living room surrounded by "love letters" from my friends and family.  I got a handwritten letter from my friend Corellia who lives in Norway and another from Anna who lives in Sao Paulo, Brazil (including the above tiny paper cranes).  I also got a card from my new friend Liz (and her husband) who I met back in February right before this all started and my friend Ashley which she delivered along with a load of popsicles and mac & cheese.  Right after my diagnosis Dave and Krysten sent me two dozen roses which have now faded but the card that came with it is still propped up on the vase.  I also got a balloon, a teddy bear and a vase of flowers from my mom a couple of days after surgery.  My friend Heather gave me a "build your own gnomes" kit which is awesome on so many levels.

I will be honest and say that there are times in my life that I didn't know who would show up if things got bad for me.  I'm an introvert, which doesn't mean I don't like people just that making social engagements isn't the first thing I think of doing when I have free time.  I know it's hard on my friends and family because I'm not naturally inclined to pick up the phone and call or otherwise be very involved in the lives of other people.  It can sometimes make people think I don't care which is very far from the truth.

The simple truth is that when something like cancer comes rocketing through your life like a cannonball, you need people.  You need people to hug you until you cry, because you really need to cry.  You need people to tell you that you are sick but that it's okay that you are sick because they will be there to spoon feed you jello when you're too tired to lift your arm.  You need people to say "This is the here and now, but it is not the always."  So thank you, thank you, thank you to everyone who sent me flowers, cards and letters, messages and comments, texts, held my hand, or dropped by to visit me for being My People.

I saw the endocrinologist today. He told me he'd presented my case at the Cancer Care Conference last week and because of that, he was able to discuss my case with a whole group of doctors.  The consensus was that because I have many years of life to look forward to that I should have the radiation treatment to prevent having to go through this again, but also that because the cancer was caught early on I will need a lower dose than usual which will reduce both the risks and side effects.  The goal is to have me done with all of my cancer treatment by my 33rd birthday near the end of August.  More details on this to come, I really want this post to be about all of you and not so much about the cancer.

One Week Follow Up / Pathology Report

Today I had my one week follow up appointment with the surgical team.  Other than being a little hoarse and a bit tired in general I'm feeling pretty good today.  The head surgeon said to give it another three week for my voice to recover and to let them know if it's not healed by then.  He also said that the "lump in my throat" feeling would go away as the swelling continued to reduce. Sometimes it feels like something pressing down on my throat so I can't swallow right, breathe well, or talk at all.

Gross details (skip to next paragraph if you're squeamish): He said the incision looked great but he wanted me to work on getting the scab to come loose by cleaning it with hydrogen peroxide and applying some lotion to soften it up. Normally it would have come off already but since I started getting a rash from the topical antibiotic gel I stopped using it.

They also gave me a copy of the pathology report.  They presented my case at a conference yesterday (my cancer is famous!) so they had the results sooner than usual.  The report confirmed the diagnoses of papillary thyroid carcinoma along with a multinodular thyroid and mild chronic lymphocytic thyroiditis.  The biopsy showed the original tumor as being 1.8 x 1.5 x 1 cm in the upper pole of the left lobe of the thyroid gland.  The pathalogic stage was listed as pT1b pN0 which means a large stage 1 tumor with no lymph node involvement.

That being said, under "lymphatic/vascular invasion" it says "Present".  The surgeon mentioned that due to presenting my case at the conference they have also already determined a treatment plan that will include radiation.  Since none of the lymphnodes they biopsied showed cancer I can only guess that the invasion is vascular rather than lymphatic but I'll have to get clarification.

The other reason they may be considering the radiation is how close the tumor was to the surface.  When they remove a tumor they try achieve a certain "negative margin" size but that's not possible in the throat because other than the thyroid the only other stuff in there is muscle and cartilage which can't be cut (unless it was a life-saving measure which it wouldn't be in this case).  There was only 1 mm between the nodule and the outside of the thyroid which is too close for comfort.

The only other interesting finding was "vague nodularity" of the right lobe which could either have been due to the thyroiditis or have been the beginning of another tumor.  There were also a couple of benign cysts but no one cares about those as it's natural for most people to gather cysts as they age.

The next step from here is to meet with the endocrinologist next Tuesday.  He'll be taking charge of my care from here out.  We'll probably talk about the radiation and all that is involved with that, as well as setting up a plan for lifelong treatment for my lack of thyroid hormones.  As for me, I'm doing what I can to rest and recover even if it is a bit frustrating.  I sat home on the couch all day yesterday after a very exhausting 30 minute trip to the grocery store the day before that.  The spontaneous napping is becoming less frequent, though, and I'm hopeful that by next week I'll be pretty close to back to normal-for-me.

Thank you all for coming along on this ride with me!  There is still a ways to go before the end, but the biggest, scariest part is behind me now.

The Girl with the Green Ribbon

I lay in bed awake a few nights ago.  It is hard to sleep comfortably for more than a couple of hours because all of the muscles in my neck tighten up and begin to ache.  It felt like someone had drawn a burning line around my neck, even though the surgery scar is only a few inches long.  This sparked a sudden memory of a story I had read many moons ago when I was still in elementary school.

When I was younger I loved scary stories. I grew up reading Stephen King because that is what my dad read but the particular story I read was actually from a children's chapter book from the school library.  The gist of the story, as I remember it is that there was a girl with a green ribbon around her neck.  She meets a boy who falls in love with her and throughout their life he repeatedly asks why she always wears the green ribbon, and she tells him not to press the matter.  They get married and grow old together, and one day she when she is old in sick she tells him to to untie the ribbon.  When he does, her head falls off.

I'd completely forgotten about the story and the book until I woke up feeling like someone had tried to cut my own head off, but apparently it was as memorable to others as it was to me because it's the one story everyone can recall reading from it.  The book is called In a Dark, Dark Room and Other Stories by Alvin Schwartz.  It's the kind of thing I think modern parents would shy away from letting their kids read but honestly scary stories scared me less as a kid, perhaps back then I was less inclined to believe that terrible things could really happen.  

So that's a little bit of random for your day!  Last night I slept real sleep for a long time.  We tried to go out for a bit today, just to walk around the mall and try to get me some exercise without getting rained on but we only made it one lap around the upper floor before I was out of energy.  I've moved on from the mostly liquid diet to mostly soft food but I am dying for some real food, especially a salad.  Hopefully with a little more rest I'll have the strength to go shopping and start cooking again.  

I've got a few more days before the follow up appointment.  I seem to recall one of the surgeons saying by then they would have finished biopsying what they took out so maybe then I'll find out about the radiation. I expect, like all things health related, it will take a few more visits to get things sorted out after that and to actually get it done.  Then maybe I can start getting the rest of my life back.  At least I still have a head on my shoulders, so it can't be all that bad.

Kickin' Thyroid Cancer Phase 2: Recovery

View out of the hospital window at 12:30 am after another shot f heparin.

Friday morning I woke up with the sun streaming through the window of my hospital room at 6:30 a.m. and decided it was time to start pulling myself together.  Sleeping is about the worst thing I could do because it allowed everything to stiffen up so I wanted to get my next dose of pain medication but my stomach felt horrible from taking it all night with no food.  The hospital kitchens are open from 7 am to 11 pm and you can order whatever you're allowed to for your diet during that time which meant I had about half an hour before I could order breakfast.

Being in the hospital really simplifies your priorities for you. Aside from wanting food and pain relief, I wanted to go to the bathroom.  I was still strapped into the compression cuffs for my legs and wearing my bright yellow "Fall Risk" arm band so I had to push the call button and wait for someone to get me out of bed.  That time of day everyone else wants the same thing and they're switching over staff so I waited about 15 minutes for someone to come get me up, which was not a bad amount of time,all things considered.

They helped me out of bed and to the bathroom, then said they would let me loose to wander around in the room (very carefully) for awhile.  I shuffled to the window and sat down in the recliner while I contemplated that which is hospital breakfast.  I felt so nauseated that nothing sounded good but I had not eaten in over ten hours.  I knew that regular consumption of food is on the requisite list of behaviors that get you out of a hospital so I settled on peppermint tea, cream of wheat with some brown sugar, and ambitiously ordered the biscuits and gravy because that seemed most likely to fortify my stomach against future doses of percocet.

After that I sat in the recliner for a little while longer reading the issue of the Seattle Times they had brought in the day before and doing my best to enjoy the view.  A little while later one of the surgeons came in for my follow up.  I immediately got a lecture about not taking enough pain medication (he could tell by how stiffly I was holding my neck) but he let me off easy since it was taking the kitchen awhile to bring up my food.  He said that the determining factors of whether I got to go home were if they could remove the drain, if I could keep down the food they were bringing, and if I could take enough pain pills to get the pain under control.  Challenge accepted!  I was so ready to go home.

I had paid attention to when they were emptying the drain during the night as to how much was collecting in the bulb and already felt confident that it would come out.  He agreed and got to work removing the small tube.  I felt a little bit of tugging as he pulled it out but that was it.  He taped on a piece of gauze just in case it continue to leak for a little bit, gave me another lecture about taking the pain medication, and left.

A short while later my breakfast showed up.  The smell made my stomach churn but I was a woman on a mission.  I ate the biscuits and gravy and made it through about half of the cream of wheat before the nurse, Summer, came in to see me.  She was a very pretty blonde, in a girl-next-door sort of way.  If I had to guess I'd say she was in here late twenties and about five months pregnant.  She gave me a dose of percocet and helped me get settled.  A few minutes later the tech and her student trainee came in to see if they could convince me to take a walk but after all the "activity" of the morning all I wanted was a nap so I begged off.  

About an hour later I woke up and the pain was still not under control so I called for some more medicine.  Summer took away the rest of the food and we talked a little about what the doctor had said about me being released and she seemed perfectly happy to help me make it happen.  She thought I might feel less queasy if I got up and walked around.  Normally the nurse doesn't have much time to spend with patients, but she said she wasn't busy and would walk me up and down the hall.  We went down to the glassed in sitting area at the end of the hall. We talked a little about pregnancy and how she hated sleeping on her side. I being an inveterate side-sleeper gave her some tips on how to make it more comfortable (pillows, lots of them). The view was even better in the daylight but I didn't have the energy to stick around for it so we went back up the hall to the nurse's station then back to my room.

When we got back to the room she said she would get started on having me released as soon as Sean made it to the hospital to pick me up.  Unfortunately, between me and him was all of Seattle's morning rush hour traffic.  Even though I felt like I'd been up for a long time, it was still only 9 a.m.  I crawled back in to bed to sleep and get up the strength to leave.

About an hour later, Sean finally arrived.  Traffic had been bad but parking in the hospital was even worse.  I felt a little bad for rushing him right back out the door but I was eager to go so I handed him some prescriptions to get filled and he went off to find the pharmacy so they could be filled and picked up on our way out of the hospital.  The two techs came in to get me out of the compression cuffs and remove the IV from my arm.

Sean returned just as they were finishing up so I shooed them out of the room so I could change into clothes to go home in.  I didn't use half of the stuff I packed, but after a whole day spent in a hospital gown I was happy to have clean clothes to put on to go home in, if you can call yoga pants and a nightshirt "clothes".  As soon as I was dressed the nurse came with my discharge papers.  It was lucky that Sean was there because I hardly remember the conversation.  Between the drugs and the work of getting ready I wasn't really with it anymore.  I'd used up all of my energy fulfilling all the requirements to get to go home and now it was up to Sean to get me there.

Whenever you're in a hospital they don't like you to leave under your own steam so a transporter was called to take us to the pharmacy to pick up the prescriptions.  I'll be on medication for the rest of my life but for the next few weeks I'll be only a short-acting form so when they want to start the radiation treatment I won't have to wait for the thyroid medication to leave my system before starting.  It was at this point that I made the mildly distrubing discovery  that I was in a completely different building from where I'd had my surgery.  I thought they'd just moved me up a few floors, but apparently I'd missed a bit of the journey.

Sean didn't want to leave me sitting outside waiting for him to bring the car around so after the transporter droped us at the pharmacy and Sean got my prescriptions he wheeled me to the car.  After checking in the day before, I hadn't been anywhere in the hospital without someone else walking me there or pushing me in a bed or a chair, but Sean had been up and down between floors in three different buildings and got us back to the parked car easily.  We went up in the elevator, across a sky bridge, down a hall, down another elevator and finally to the car.  Even though I'm sure I didn't look it I was ecstatic to be so close to being out of the hospital.

Sean had driven back and forth to the hospital so many times in the last month that he knew the way already which was good because I was in no condition to play navigator.  I spent the whole ride home focusing on keeping my eyes open so I could look out the window so I wouldn't get car sick.  A little more than twenty minutes later I was finally home!   Sean helped me up the steps and into the house and then we both slept for a few hours.

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Since then I've slept on and off.  It's hard to sleep for  more than a few hours at a time or my neck gets really stiff.  Yesterday was the third day since the surgery and it's been the worst, so far.  I nearly passed out that morning  when I was putting the antibacterial gel on the incision. I've been very nauseated and had a few episodes of fainting (thankfully all while already being in a bed).  I've also been coughing up -- or at least trying since the muscles aren't working well -- a lot of mucus after sleeping but I think that might be the after effects of the intubation and finally being able to drink enough consistently to be hyrdrated.  I keep losing my voice and when I do have it I feel like I am shouting just to be heard at a semi-normal volume.

I feel like today I may have turned a corner, though.  The pain seems to be subsiding and I'm taking the pain pills less frequently, but I'm still taking the pills when I notice the stiffness is getting worse or I'm clenching my teeth.   When I'm awake I try to keep stretching my neck and moving around a little to keep the muscles limber.

The thing that feels the worst is eating so I feel constantly hungry but it is so tiring to eat more than a little food that I run out of energy before I get full. Several friends brought me lots of tasty food, though, so when I am able to eat at least it's good food.  Other than a box of organic mac n' cheese last night we have not done any cooking since I got home from the hospital which has been a blessing.  It won't be surprising to me if I've lost some weight through all of this.

I've got a follow-up appointment with the surgical team this coming Friday.  By then they should have completed the full biopsy of my thyroid and decided what the next step is in terms of treatments.  There is still a chance they will decide against the radiation treatment but it is probably a very small chance.  For now my job is to rest and take care of myself.

Kickin' Thyroid Cancer Phase 1: Surgery

View from the waiting room.

Yesterday at about 7:30 am I got a call from the hospital.  They were running way ahead of schedule so they wanted me to come in at 9 am instead of 12:45 pm.  We'd stayed up a little late to visit with friends who had come to bring us food and keep me distracted so we were both tired, but determined to get there and have the surgery as soon as possible.  I rushed through a shower and then packed while my boyfriend, Sean, got his shower and ate some breakfast (no food or water for me).

We pulled into the parking garage below the hospital at 9:03 am and rushed to the check in desk.  By 9:30 I'd been arm banded (Sean joked that I'd been tagged but it's not far from the truth, they ) and we got to sit in the waiting room for a few minutes.  The hospital is actually a series of buildings in downtown Seattle that are connected by sky bridges so most of the waiting rooms have great views.

About 15 minutes later, just as Sean was getting comfortable, they called my name and took us into the maze that is the inner, hidden portion of a hospital: Narrow, winding corridors packed with people and equipment.  If we hadn't had a guide I'm not sure I could have found my way.  This being my 4th surgery, I was prepared for what followed.  I always braid my hair in pigtails using hair ties with no metal because it keeps my hair out of the way.  I put my street clothes in a garment bag and put on my hospital socks with the rubberized soles, gown, robe, and hair net (another reason to braid my hair since it's easy to tuck in).

Each of the people who would be in the surgery stopped by for a few minutes.  Some to ask questions, but others just to introduce themselves (In my case, 3 doctors, 2 nurses, and the anesthesiologist).  I love that they do this.  It makes it a little less scary to walk into a surgery suite when you've already met the crowd of people waiting for you.  I also got the results of the CT they'd done a couple weeks ago; the cancer hadn't spread to the lymph nodes.

Because they were removing my thyroid they had to do a blood test before hand to check my glucose levels and they also inserted an IV.  I can usually handle all other needles but I hate IV needles because they are usually huge and for surgery they put it in the back of the hand.  She did a great job, though.  I barely felt anything and I could still move my wrist comfortably.

After they finished prepping me they walked me into surgery.  They let me keep my glasses on until they I got in the room so this is the first time I've really seen an operating room.  They are surprisingly large with a single bed in the middle of a room that's maybe 20 x 20 and huge lights hanging over the table.  It looks surprisingly similar to a lot of alien abduction movie scenes where the aliens are about to start experimenting on the human.  The room needs to be that big so there is room for all of the people and their equipment.  They got me situated on the table with a rubber donut under my head to stabilize it and a pillow under my knees.

They put a mask over my nose and mouth, first with oxygen and then with the anesthetic.  I always try to let them know that it's working so right before I fell asleep I said, "I'm going down!"  They said after they knocked me out, they would regulate my unconscious state through the IV and intubated me so they could paralyze all the muscles during surgery.  There are two large muscles (called the sternocleidomastoid) that go from the sternum out to the collar bones and then up to the mastoid bone (just behind the hinges of the jaw) that cover the sides of the neck and below that are two sets (one on each side) of three muscles called the strap muscles. All of these had to be pulled to the sides to get to the thyroid which is where a lot of the pain comes from afterward.

A couple of hours later I woke up in recovery.  It seemed like an instant to me, but I know from experience that I was probably in recovery for 10-15 minutes before I came to.  They gave me a nasal cannula (a tube that goes in your nose with oxygen) and some warm blankets. During surgery they had strapped compression devices around both my legs to keep the blood from pooling and forming clots and I could feel them alternating squeezing my calves.

Due to the surgery on my neck and the intubation it was difficult to speak at first.  It was really frustrating because the nurse (who was otherwise a very nice man) kept asking me questions like "Do you want your glasses on or off?"  I kept saying "Yes" because it was all I could eek out.  One of the surgeons stopped by and gave me a quick talk on taking care of the scar and a giant tube of antibacterial gel to put on it.

After I was conscious enough and breathing well they took off the oxygen and a transporter came to take me to my room.  I don't remember much of the trip but I was happy to see I had a small room to myself and wouldn't have to share with someone who might want to chat me up.  They wheeled the stretcher right next to the hospital bed and then had me sit up and alternately slide my hips and move my legs until I was all the way on the bed.  A lab tech came in to draw some blood so they could test my calcium levels since the tiny parathyroid glands that regulate blood calcium are located right behind the thyroid and sometimes can get damaged in surgery.

I was so happy to see my boyfriend was right behind them in the room.  I was also more happy than is reasonable to see a cup of water and a little plastic tub of red jello because I hadn't had anything since the night before.  I had him take a picture of my neck so I could see the incision.  The little tube was to drain went to a rubber bulb that would help drain the wound for the first day.  Other than a strange tugging sensation every once in awhile, it didn't really bother me.

He helped spoon feed me the jello which took about fifteen minutes because I could only eat a third of it at a time before getting tired.  Once I finished eating I sent him home to get some food and sleep himself.  By this time it was about one in the afternoon and he'd been up since 7:30 am with just a bowl of cereal and a few hours of sleep to go on.

I dozed on and off for about an hour when I noticed my right hand had started swelling.  I lifted it to see what was going on and the alarm on the IV drip machine started going off.  The nurse assistant came to check on  it and we tried to see if we could get my arm in a position where it would keep flowing, but after the third time the machine went off my nurse, Susan, decided it was time to get it repositioned.  The IV tech came in and moved it into my upper arm which ended up being more comfortable. Then Susan helped me order some clear broth, some peppermints and some bottled water from room service.  I wasn't being allowed anything solid until I could prove it would all stay down.  She also gave me a shot of heparin in my belly to help prevent blood clots from forming which is a big risk following surgery/hospitalization.

I dozed again until they arrived with my "lunch".  Since Sean was still home resting it took me even longer to eat the broth than it did the jello, but I was happy to have anything going into my stomach.  After that I rested some more while I waited for Sean to get back.  Up until about 6:30 pm I had felt fine.  I'd been up to the bathroom twice -- being in a hospital is one of the few time that people get excited about you peeing -- and hadn't needed any extra pain medication.  Then about ten minutes before Sean arrived I started having excruciating pain in my bladder.  By the time he got from the parking garage to the room tears were streaming down my face.

The hospital staff changes every 12 hours at 7 p.m. and 7 a.m. so in the midst of all the pain my new nurse (Lee) and his tech came into see me with Susan so she could hand me off.  They gave me my first dose of percocet but it didn't help at all so the tech helped me into the bathroom.  They make you pee in a measuring cup that is set inside the brim of the toilet (they call it a "hat") and I nearly overflowed the cup.  I'd been to the bathroom only 45 minutes before but between the broth and the IV fluids I guess I'd gone from empty bladder to excruciatingly full bladder before I could tell my bladder was even filling up.  Thankfully this was the only significant pain I've had.

After this it was time to eat dinner.  I begged Lee to bump me up from clear liquids to the all liquids menu so I could have some pudding with my broth, but he said he thought I was doing well enough that I could have some soft food, so along with the pudding I got some mac and cheese and a mug of chamomile tea.  Sean helped me eat my dinner then sat with me for about an hour while I read a bit of a book I'd brought. Then the tech who had helped me to the bathroom got me up for my first walk since the surgery.  We went down the hallway to a nice area with floor to ceiling windows and a great view of the city, then back to my room.

A little after 9 pm I sent Sean off home again.  In the weeks leading up to the surgery I'd been worried about staying in the hospital overnight by myself, but between having a room to myself and the staff making me feel so comfortable I decided it would be mean to ask him to stay in the tiny uncomfortable recliner with the staff coming in every hour or two to check on me.  He got me situated and then left for the evening.

Overnight they came check my vitals every couple of hours so between that, more pain meds, bathroom breaks and another shot of heparin I didn't get much sleep.  In the middle of the night one of the compression cuffs got twisted around and was causing my foot to flex every time it inflated so I had to call the nurse in for that as well.  The compression cuffs were a mixed blessing.  They help prevent blood clots and also work like a massager so I wouldn't have been able to lay there that long without them, but by the next morning the friction had made my skin so irritated I still itch from my knees to my ankles.  If not for the drugs, I don't think I would have gotten any rest at all.

By about 4:30 a.m. I was feeling incredibly exhausted so I refused when they asked if I wanted to get up again and slept from then to about 6:30 a.m. when the sun started coming up over Seattle through my hospital room window.

Surgery Day

Well folks, this is it!  I'm up, bags are packed and we're headed soon to downtown Seattle to check in at the hospital for surgery.  I went out late with Heather, Allen, Ashley, and Sean to get pizza at Zeek's for my last solid meal for the next few days.  It was so nice to be surrounded by fun and loving people.  It made hard to feel scared about today.  I also got to see Dheeraj and Phoebe who I haven't seen in ages but are among my favorite people I've worked with at Microsoft.  I can't help feeling blessed by knowing all these wonderful people.

Once I get to the hospital they'll check me in, and then I'll get to wait for an indeterminate amount of time before they prep me for surgery.  Pre-surgery prep usually involves changing out street clothes for a hospital gown and some ugly grey socks.  I can't wear either contacts or glasses into surgery so I'm basically blind after this point.

After getting fashionably appropriate they will stick me on a gurney and put on a pulse/ox monitor (clips on your finger) that measures pulse and oxygen saturation.  They also will put on an automated blood pressure cuff that periodically inflates and checks my pressure.  Lastly, they  will insert an IV.  Generally they do this by inserting it into a vessel in the back of your hand.  To me it's always felt like they' were trying to lodge the needle in the metacarpals of my wrist.  The only good news is that shortly after they do this they start giving some kind of anti anxiety medication and you suddenly don't have any worries anymore.

Everyone I meet will ask me for my name and birthdate to confirm I am who they think I am.  The anesthesiologist will stop by a for a brief chat about his or her roll in the procedure and get my informed consent. Then the surgeon will show up and I'll have to confirm with him what the exact procedure to be performed will be so that he and I are in agreement (so I don't get the wrong part lopped off).

The ORs are bigger rooms than you expect but I can never see much with no glasses.  There are usually  a dozen ore more people in the room.  Then right as they're going to knock me out they'll call a stop for a safety check where every person involved in the procedure has to agree that the person and the procedure are correct.  After that comes the easy part for me.  I'll be unconscious for a few  hours while they work on me and then wake up some where with warm blankest, juice and cookies.

I'm  a bit hazy on what will occur after that, but after I've recovered sufficiently from the anesthetic I'll be taken off to my room for the night and hopefully be fed real food.  Then it is up to me to try to sleep as much as I can.  At some point my boyfriend will likely leave for the night and I just hope I'll be so out of it I'll sleep through the night.

This will be my last blog post for a few days.  Please check the Facebook page for updates instead.

Start the Countdown

The hospital called.  My check in time for surgery is 12:45 pm tomorrow.  I still need to pack for the hospital but the house is clean and the Skinny Loaded Baked Potato Soup is in the works.  A few friends are going to stop by this evening to drop off some food and give me something to do other than watch the clock.  They day before I surgery I always feel like I get a free pass on staying up as late as I feel like because more than likely I'll be spending the rest of the following day asleep.

I'm going to try to sleep in, but I have a feeling I'll be up by 8 am, dusting or whatever else I can do to keep myself busy.  I'm sure I should be trying to rest, but I'll be doing a lot of that after Thursday and frankly it is boring as all get out to be laid up in bed.  Maybe I'll finally finish Skyrim (after only a year and a half).

If you want to show your support tomorrow wear blue, pink, or aqua for me.  I'm also open to all the prayers, mojo, and good vibes anyone wants to send my way.  Thank you all for giving me your advice, support, and love.

My Version of Surgery Prep

When faced with significant life challenges some people turn to drugs or alcohol, or developing an eating disorder.  Not me.  I turn into Susie Homemaker.  As far as coping mechanisms go, I don't think cleaning binges with fits of cooking are too terrible.  It keeps me too busy to let the panic really set in and gives me a sense of purpose and accomplishment in the face of something about which I can do nothing.  I would much prefer to have a zen-like calm about it all, but I can settle for a clean apartment and a fridge full of food.

I think at this rate I'll be cured of cancer before I can fully accept that I have it.  The same thought I had on the way home from the hospital after I got the diagnosis keeps popping into my mind: "I can't believe I have cancer.  That's so dumb."  I should believe it.  After nearly a year of school in which we've been learning about the most common cancers of all the major organs of the body I had started to believe that it might be impossible for anyone to escape having cancer.  It's one of those things that you know happens to people, just other people.  There aren't a lot of types of cancers common for people in their thirties; I happen to have one of them.

Yesterday we cleaned out the fridge and went shopping for a bunch of soft foods for me: ingredients for making soup, vanilla ice cream, two flavors of apple sauce, eggs, and generic cheese crackers (which I might not be able to eat for a couple of days). I've already got greek yogurt and oatmeal to round out the rest.  I also did a few loads of laundry and dishes before I ran out of energy.

Today I got up at about 9 am after waking up at 5 am, reading for two hours and falling asleep again.  I finished washing the remaining few dishes, scrubbed the kitchen top to bottom, swept and mopped the floors, washed all of the bedding, vacuumed the bedroom, and washed and folded the last two loads of laundry.  I also made a pot of gingery carrot soup.  It basically looks like baby food but it's tasty, healthy, and quick to make.

Tomorrow I still have to make the cauliflower potato soup, scrub the bathroom, vacuum the living room, and pack.  The hospital called today to the pre-surgery check in, but I won't find out when my surgery is until they call me tomorrow.  I called their Patient Account Services (aka Billing) department again and confirmed that everything is all set with them.   I never received a letter about my financial aid application but everything is all set in their system and I'm running out of energy to freak out about these things.

Come what may (barring another reschedule by them), Thursday I'm having surgery.  It couldn't come soon enough.

Two Days, One Night Stay

After three surgeries, I've got the outpatient thing down pat:  Wear loose clothing with elastic waistbands, no metal, hair in braids, slip on shoes, leave all your valuables at home except your driver's license, and forget wearing your contacts, just bring the glasses.  As long as you are out the door before patient recovery closes for the evening you don't have to stay overnight which is a powerful motivator for me.  For my second surgery I left in a hospital gown with two hospital blankets wrapped around me because my surgery had taken so long they were "threatening" to keep me overnight if I didn't get up and leave right then.

This time I don't have a choice.  The overnight stay is mandatory so they can make sure that I'm doing certain things, like breathing and swallowing, which I suppose are important.  The tough thing is that I won't know when my surgery will be until the day before.  If it's early in the morning I can expect to possibly be awake in the evening and in the morning but if they don't start until later afternoon I'll probably sleep through most of my stay.  I've started a tentative packing list based off some internet research.

What to Pack for the Hospital - Before Surgery

1. Food/Water - I won't be allowed to eat starting the night before, but whoever is with me is more than likely to get hungry.  I'm also allowed to drink water up to two hours before the surgery so depending on when the surgery is it's better to bring our own rather than pay for expensive and crappy tasting hospital food.
2. Entertainment - Even when you have a surgery time, that's sort of the minimum time before the surgery starts and you have to be there at least an hour before your surgery time.  The later you're scheduled in the day, the more likely your surgery is to start late.  For my second surgery I waited 2 hours past my surgery time.   It takes about 10 minutes to read every "good" waiting room magazine so it's best to bring your own entertainment.  In my case I'll have my phone and probably my Nintendo DS with DragonQuest IX because I never finished it.
3. Photo ID - You can't get registered without it.  If I had health insurance I'd bring that card, too, but the wallet stays at home with all the credit cards, etc.  
4. Surgery Ticket - This is a slip of paper they give when you sign up for surgery that has all of your information in one place.  It's not necessary but it makes the process go faster.
5. Durable Power of Attorney - Right now, if I'm unconscious no one has the right to make decisions about my medical care because I'm not married and my "next of kin" live out of state.  The durable power of attorney will give my boyfriend the right to make decisions about what happens if I end up in a coma, brain damaged, with massive organ failure, etc.  It's not a conversation you really want to have with anyone but we've talked about how long I'd be willing to stay hooked up to machines and what happens if the worst happens.

What to Pack for the Hospital - Overnight

1. Nightshirts, (2) - The spare is in case of accidents which sounds like something I would do.  Long shirts will protect my dignity better than a hospital gown and be less fussy than a set of pajamas.  When you're just recently anesthetized and in a lot of pain it's like dressing a giant toddler. 
2. Undies  - I may not be allowed to wear them (depending on what state I'm in coming out of surgery) but nothing says "awkward" like wandering around a hospital full of people with nothing on under your gown.  I was a girl scout (very briefly) and I'm pretty sure extra pairs of clean underwear fall under the edict to always be prepared.
3. Warm socks - The hospital will undoubtedly give me a pair of ugly grey socks with rubberized paint on the bottom before heading into surgery, but they're not super warm and overnight hospitals aren't cozy.
4. A real pillow - I learned when I was volunteering in the Urgent Care at Group Health that good hospital pillows are hard to come by.  The ones they have are either covered in a plastic bag (which you can imagine what that sounds like every time you move your head) or rubber coated which doesn't exactly bring cuddly time to mind for me.  That being said, I'm not sure how I feel about bringing my best pillows to the hospital so they can get MRSA rubbed all over them.  I might need a pillow that can go in a hot water bath when it gets home.
5. A throw blanket - Because in my observations, they basically give you several thick sheets and call it bedding, with no real blankets.  The hospital's solution to cold patients is to warm up some of these thick sheets and place them on top but eventually you start to look swaddled and it is uncomfortable because you can't move around.
6. A robe - I don't know what my accommodations will be like but I'm guessing being rather on the poor side of society at the moment that I'll be sharing a room with other people and may have to walk a ways to find a bathroom so it's a good idea just to be prepared to be out in the cold.  
7. Rubber soled slippers - For the above same reason.  Slip on shoes that are less likely to result in my accidental injury on freshly waxed floors.
8. Various Electronics & Cords - I'm planning on keeping my phone with me overnight for communication/entertainment and so I can plug in my headphones and drown out any obnoxious neighbors. Since there won't be anyone with me overnight any other valuable things will go home with my boyfriend so they won't be at risk of getting stolen..
9. A paperback book - "In my day, television was called 'books'..."  I will not say I wouldn't be miffed if someone stole a book from me, but I can afford to replace a book.  I can't afford to replace any of my other electronics so this is the safest bet for textual entertainment.    I'm also realistic enough to know that mostly what I'll want to do for the first 24-48 hours is sleep as uninterrupted as possible so arranging for my entertainment might be unnecessary.

What to Pack for the Hospital - Next Day

1. Toiletries- I have a ton of mini toiletries from going to a wedding earlier this year so I'll be bringing all the tiny soaps/shampoo/body wash etc. in hopes that I'll feel well enough to get up and shower.  I'll also be packing toothpaste and a toothbrush because that will be happening even if I have to swish with a hospital cup and spit into a plastic urinal. There will also be a the other random stuff: hairbrush, lip balm, washcloth for my face, lotion, deodorant etc.  Whatever I normally use in the morning when getting ready.
2. Clothes to go home in - Even though the surgery will be in my neck instead of my pelvis this time, I still plan on packing loose, uncomplicated clothing that can all be easily slipped on with a minimum of neck tugging.  This includes sweat pants, a wide necked shirt, underthings, and slip on shoes.
3. Snacks - Since who knows if/when they'll feed me during the day while I'm waiting to be discharged. I'll have to see what I can find that will be soft enough to swallow but not need refrigeration.  I'll probably also pack something for my boyfriend since he is perpetually hungry.  
4. Medications - If at all possible, I'm going to try to fill any prescriptions I need before leaving the hospital.  Most hospitals have a pharmacy within them and the last thing you want to do on your way home is stop at Target and wait in line for 15 minutes while you're in pain.

So, that's my list!  Later today I'm going grocery shopping for snacks for the hospital and also so I can cook a bunch of homemade pureed soup tomorrow for me to have for the few days after I get home.  That way my boyfriend will only have to nuke a bowl in the microwave.  I can't believe it's Monday already!  Four more days to go.