The Doctor Will See You Now

Or, will he?

I have a surgery date set for August, but it might need to be changed.  I called the endocrinologist's office, and it turns out Dr. Lehil is leaving town to be replaced by Dr. Oertel, but neither of them are seeing patients in August.  So, I'm either going to have to postpone the surgery or find an endocrinologist at KU Med Center.

I called KU Med Center to set that up, but they say they won't make appointments without a referral.  Now I wait for the referral to go through, and if it does, then I will be able to ask them if they have availability in August.  If they don't, I'm back to square one.

The surgeon's office, oddly enough, told me that the two local doctors wouldn't be around, but did not automatically instruct me to make any endocrinology appointments or offer to do so for me.

But I'm sure as heck not going to have my thyroid removed and then leave my body chemistry hanging until I can get medication.

For those who have asked when I'm having surgery, no announcement of an exact surgery date is coming until I get this straightened out.

Butterfly Cancer

Papillary Carcinoma is butterfly cancer.  I think I caught it from the butterflies.  There will be no transformation, no metamorphosis.   I will not spread my wings and fly.  I was already doing that without butterfly cancer, thank you.  And who gets a tattoo of a thyroid gland? No one, that's who.

Recall that the thyroid processes iodine.  Three doctors have asked me if I've had radiation treatment of any kind, because that can cause butterfly cancer.  I have not.  There is a lot of iodine in some foods, like seaweed.  I love eating seaweed.  One evening, I was giving a talk about monarch butterflies at a Science Café in Hays, KS, and a man came up to me after the talk.  You know the sort.  The FBI had been following him and stuff like that.  He handed me a packet of his research and said, "you know why the monarch butterfly population crashed?  Fukushima."  Maybe Fukushima tainted my seaweed, and gave me butterfly cancer.  Thanks to some Japanese nuclear engineers with really bad oceanic geology skills, I ate radioactive seaweed that was processed by my thyroid.  Or I just have bad luck.  My luck is not as bad as the citizens who once lived near Fukushima.

I've discovered that the ENT doctor here in town has the same opinion about lymph nodes as the KU Med Center doctor:  Only remove them if they are enlarged and are showing obvious signs of cancer.  So, I've asked the doctor here in town to start the process of scheduling the surgery.  His nurse will call me on Wednesday the 29th of July, probably, after squaring things away with the insurance.  I kept finding myself complaining to the doctor about the insurance company, which has asked his office to substantiate a claim, and has failed to pay for the pathologist at KU Med Center.

"I didn't even need the pathologist at KU Med Center, because I didn't doubt the original pathology," I said, as I wondered why I was telling him this.

I think I was telling him because he seems like he cares, and he listens even when I'm babbling on about the "perspective of a hospital patient," or "bad timing, just really bad timing."  And he doesn't look over his glasses at me and purse his lips like the KU Med Center doctor.  He even gave me his cell phone number, just in case I have any questions.  Of course I lost that.

I've been losing things and forgetting stuff, you understand.  I have some trouble getting motivated in the morning normally, and this morning I just wanted to sleep for ages.  But I've managed to drag myself to work each day, maybe a little late, and plug away.  My patience for unreasonable people has become more limited.  I've had to tell several people who aren't satisfied with their milkweed plants that they aren't being reasonable, and they respond remarkably well.  One woman complained that her butterflies died after eating the milkweed we sent her.  I should have told her that the plants are giving the butterflies cancer because of Fukushima, but I really don't want the FBI to give me any trouble.  The timing for that is not so good.

Shoot for the Stars

I am a pragmatist.  I see no practical reason to worry about something I have no control over, so when I do start to feel a worry creeping in, I remind myself that humans are programmed to worry as a survival strategy, and that I am in no real danger.  I am not a cave woman on the lookout for the next ambush by a saber tooth tiger.

Worry spoils everything.  I think that sometimes when I feel humor or curiosity about things that would upset most people, it is disarming to them.  Someone confronted me about this once.  On a college field trip, I had been left behind at a filling station, and no one in the van noticed right away that I wasn't there.  When they pulled into the parking lot, I was laughing at the situation, and one of the other students told me I should be upset.  He was angry at me for being happy.  Sometimes, when I get a little bored, I secretly hope for an adventure like a flat tire, or some unexpected challenge.

Certainly, now that I've been diagnosed with thyroid cancer, thoughts of malignancy taking over my body have crossed my mind.  I put those thoughts aside as being highly unlikely in my situation.  A new body pain that I've never experienced before might make me wonder, but I'm really not into torturing myself with doubt about the future.  Nobody really knows the future.

I do actually know one thing about the future, and that is this:  I am going to have to abandon my irresponsibility around taking medicine on a schedule.  My thyroid gland is going to be removed, and it serves many vital functions.  Every day for the rest of my life, I am going to have to take medication that will replace the hormones my thyroid is currently making.  My thyroid is working great right now, by the way.  Papillary carcinoma does not impact thyroid function.  I am doing my best to appreciate the time I have left with my native body chemistry.

I also know that I'm going to be having a surgery that involves (a highly skilled surgeon) cutting my neck open and removing a body part from my throat.  This is perhaps one of the least pleasant images I can imagine, and it gives me the complete heebie jeebies.  The imagery can keep me awake at night, so thank goodness for meditation.  Some have suggested that I select my doctor based on their ability to do this without leaving a scar.  I am going to definitely have a scar, and sure, I would rather not.  But my vanity isn't going to determine who I select as a surgeon.  I'm too pragmatic for that.

I also don't feel sick at all, so I don't feel like I'm fighting anything, or that I will be a survivor.  I've fought things before. I've survived some pretty rotten things.  This cancer is not worth those kinds of words.  It's more like my thyroid is a bratty teenager freeloading roommate getting tough love.  Behave or leave, it's up to you, thyroid.  This is not breast cancer, brain cancer, liver cancer or any of those.  I am at once thankful that I do not have one of the more aggressive cancers, and also in awe of those who have had to endure them and the treatment, whether they survived or not.

One thing I haven't mentioned is that I will probably have to take a single pill that contains radioactive iodine.  In order for the pill to work, I will either have to stop taking thyroid medication or opt for another drug (which I need to learn more about), that will allow the radioactive iodine to kill any remaining thyroid cells in my body.  Apparently papillary carcinoma can pop up in other body parts.  The doctor said there are very few side effects of the iodine pill, but failed to go into the details of how a person copes with zero thyroid hormone replacement after a thyroidectomy.

This, I remind myself, will be nothing compared to the chemotherapy required for many cancers, which I hope to never have.  This, I remind myself, will be a short-term discomfort compared to...geologic time.  Yes, that's right. I just compared my era of discomfort to the history of the earth.  I did this because I'm a pragmatist. I am also thinking about how this compares to the big bang, and it's really just peanuts.  I'm also thinking about how nobody ever really knows what is going to happen tomorrow.  But shit, people, lighten up, because we're all going to return to the stars, and that's really the most awe-inspiring ultimate goal I can think of.

A Lump in My Throat

My dearest acquaintances and other fellow humans:

So a lot of people have asked me how I discovered that I have a cancerous nodule on my thyroid.  I didn't. I just got lucky that Dr. Loree Cordova saw it during an annual well-woman checkup.  She asked me, "has anyone ever told you that you have a nodule on your thyroid?"  She placed a mirror in front of me and showed me the lump in throat.

That led me to an ultrasound, then a biopsy, and then a consultation with an Otolaryngologist, which is fancy speak for an Ear, Nose and Throat (ENT) doctor.  The ultrasound revealed two nodules, one of which is calcified, and the biopsy showed that the calcified nodule has signs of papillary carcinoma. I've seen three ENT doctors now, and the third one at KU Med center ordered another ultrasound to examine my entire neck area.  She also had the actual slides from my biopsy sent to her pathologist, who confirmed that I have papillary carcinoma in that one, calcified nodule.

The second ultrasound helps to determine whether the lymph nodes are involved.  After a visit to KU Med Center yesterday (a long drive that could have easily been a phone call),  I learned yesterday that my lymph nodes do not show any sign of enlargement, so unless surgery shows otherwise, there seems to have been no spread of cancer to the lymph nodes.  This is good news!

The KU Med Center doctor is a faux red-headed eastern European (as far as I can tell from her strong accent), who has the opinion that the lymph nodes should not be removed "prophylactically."  She gave me documentation to back up her opinion, which differs from that of the Lawrence ENT doc, who may not have read this professional document yet, since it is fairly new.  So now I'm debating which doctor will do the surgery, and will probably have a conversation with the local ENT, who I like a lot, about avoiding prophylactic removal of lymph nodes.

So those are the facts.  I'm really doing very well with this news, and have found that it is sometimes difficult for me to speak to people about it because they are more upset than I am.  Then we get into the realm of only being in control of one's own feelings, but also wanting to be compassionate about other's reactions to some bad news.  I have cancer that is super curable!  It isn't in my lymph nodes! It's not an emergency!

Now, I want to gently turn my attention to the next thing, like picking my kid up from band camp, which is where I am headed now.

Love to you,

Angie

A Bump in the Road

Hello again to those of you who have already received news of my recent health kerfluffle.  For those who are unaware, I am including this letter that I wrote, and I will be blogging about it rather than updating everyone by email.  I will be writing another, short entry today, so come back again soon.

Jun 3, 2016

Hello beloved family and friends,

I am currently sitting in a doctors exam room waiting for him to open the door. I have been diagnosed with (probable) treatable thyroid cancer based on a needle biopsy and may be having a thyroidectomy. I likely won't know the amount of thyroid removed until after the surgery. (The best case scenario is that the needle biopsy was wrong. Then it would be a lumpectomy.) This is not confidential info. So feel free to talk about my health issue and put me on your prayer list if that's your thing.  I'm doing well now, mostly pissed off, but I feel healthy so I'm making the most of it.

I'm getting a second opinion from KU med otolaryngology on the 13th.

I'm out of the consultation now, and everything went as expected. The lump is on the isthmus (bridge in the middle) of my thyroid and the initial pathology indicates it will likely all need to go.

We'll probably be taking our family vacation first.

I feel assured that this is, as the doc says, just a bump in the road. I've heard lots of people tell me that they or someone they know went through this and are doing great now. Thank you in advance for your positive, loving energy.