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.