Insomnia

My lovely doctor called this morning and I told her about this weekend, how I woke up at 11:30 on Saturday night with my heartbeat so slow that I couldn't move my body and I was swirling in and out of consciousness. Low calcium, I told her, it's gotta be. I've been feeling numbness and tingling in my hands and feet all week. The last time I had hypotension like that was right after my thyroidectomy and I had to be put on a calcium drip for four days to get my levels up.

She mentioned that my thyroid levels were pretty good, TSH is at a 0.39 or something, which is still pretty hyper, but my thyroglobulin antibodies look nice and low. Oh, I think I can post a screenshot of my results; the power of technology!



She wants me to do thyrogen shots soon and most likely another WBS. Blech.

I'm still feeling off. Napped for two hours today so of course it's nearly midnight and I can't sleep. Hands and feet are quite numb. Heart seems okay.

Medicine: 100mg Synthroid, 7.5mcg Cytomel, calcium, iron, vitamin D.

In sickness and in doctor visits

Here's what's happening with us:



3 out of 4 of us are sick. Dylan has croup, Katie has a slight cough, and Sean came home from work today feeling like his head was a balloon. So far I am feeling fine--knock on wood--and thankfully so because I need to be well to take care of my loves.

I saw my new endocrinologist this afternoon and suddenly I feel like I have so much more control of my health. I'm feeling well on my new 150mg of Synthroid, my doctor actually looks at me instead of down at his computer, my bloodwork is coming back close to normal. Things on the cancer front are looking up.



The office is old and worn down, but friendly. My doctor has been practicing endocrinology and specializing in thryoid disorders for 32 years.




My old doctor would put his hands on my neck, talk to me for about two minutes, type away in his computer while I sat there, and then I'd leave. I spent two hours at my new doctor's office today, chatting with the nurse about kids and calcium and then sitting down with the doctor to talk about my entire medical history as he wrote it down and talked about reports out of the New Yorker. We chatted about different medical opinions on the treatability of Lyme disease, affects of tachy brady syndrome, the medical path we will be taking on my cancer journey. It felt more like I was sitting down with a colleague discussing health trivia than a doctor/patient visit. He was thorough and took the time to talk to me about any health concerns.

And then he did the coolest thing ever. While examining me--and I mean actually taking the time to examine my heart and lungs and throat--he had me drink water while pressing hard on my throat to see if he could feel any thyroid remnants when I swallowed. He couldn't, obviously, since I don't have a thyroid but I thought it was so cool that he took the time to evaluate me instead of just relying on my lab results.

*

On the potty training front, Dylan is doing great! We have 1-2 accidents a day since starting to potty train on Friday and I've learned that he doesn't realize that he is wearing underwear instead of a diaper now and then so he goes and then acts shocked and sorry about wetting his pants. Poor kid. So I've been letting him run around the house naked all week and he has been awesome. We started a sticker reward chart and when he goes on the big boy potty 12 times he gets a prize.



Today he went twelve times on the potty just so that he could earn a prize before bedtime. Since he had earned his quota on Tuesday and Wednesday I took him to Target this morning for a special present: a giant truck. From now on he will be earning toys valued at about $1, but for the first reward we wanted to make it a huge incentive. Dylan likes nothing more than trucks. And so this morning as soon as we woke up we headed out the door where he purchased a car carrier--his third--complete with tiny monster trucks, street signs, and traffic cones.

This is what $19.99 worth of 2-year-old happiness looks like:



And here is what $0 of toddler happiness looks like:

Thyroid cancer happenings

I expect to feel not so great as I recover from RAI--radioiodine therapay--and start to come down from my severe hypothyroid state, but I do not expect to no longer move. My body is failing me lately and I know I need time to heal, but on Thursday my heart palpitations felt so scary that I spent the morning lying horizontal on the couch with one hand on my phone ready to call 9-1-1 in case I started to lose consciousness. I was dizzy and foggy and having chest pains. I called my endocrinologist who scheduled me for blood work on Friday and an appointment first thing on Tuesday morning.



After about five hours of feeling like I was having a heart attack, my palpitations and irregular heartbeat normalized again and mama life resumed as usual with baths and snacks and naps and diaper changes.

I walked into my endocrinologist's office Tuesday morning feeling absolutely desperate. I have been so fatigued this month that lifting my arms for even a few seconds is exhausting. I've got about twenty tiny bruises on my legs. Here's a picture of that hotness:



I've had episodes of dizzy spells, painful muscles and joints, numbness and loss of sensation in my arms, hands, feet, and face. Family members and friends have invited me to parties and pools and I've declined because I don't have the energy to barely sit up any longer.

When I say I was desperate as I walked into that office, I mean I was absolutely desperate. If I had the energy to get on my knees to pray right there in that waiting room, I would've done it; I was in need of a miracle.

I've blogged about how I absolutely do not like my endocrinologist before, haven't I?

He's a total jerk. I haven't liked him from the first appointment, but I felt like he knew my history and I was afraid to switch doctors because I'm on this scheduled path: thyroidectomy, RAI, WBS, on meds, off meds, raising TSH, lowering TSH, six month post surgical visit, yearly visit, it goes on and on. If I switched doctors what would happen if the new doctor had to pick up where this doctor left off? What if the new doctor missed something because he hasn't worked with me from the start of my thyroid cancer journey?

But walking into this doctor's office automatically makes me feel as if I am walking into an abusive relationship. This doctor squashes my optimism, and when you have cancer, optimism is pretty important for healing.

He walked in, buried his face in his laptop as I told him that I felt beyond awful. I begged for him to make me feel better. I offered suggestions of what it could be: anemia, low TSH, high TSH, low calcium... and do you know what he said? He said that my symptoms are not related to my thyroid or my calcium. That I should wait and see if things just magically start feeling better. That I should go see my primary care physician because I could have something else wrong with me. This is not thyroid-related.



And I quote, "Most of symptoms she is mentioning are not typical of hypothyroidism or hypocalcemia - so I am not sure if they are related. She should felt whole lot better now as thyroid and calcium levels are both normal range. She should give 1 more month to see if things settle down in a month, she should see her PCP to look for other possible cuases."

And then he stood over me and lectured me that I really should know the dosage of calcium I take and not just the brand name because it took five minutes out of his day to look up that 750mg of calcium carbonate is really just 500mg of pure calcium. Oh, I'm sorry Doctor, I thought knowing what drugs you prescribed me was your job.

I belong to a thyroid cancer support group online and I have talked with many people who are going through the same overwhelming fatigue as me, so how could this doctor tell me that my symptoms are asymptomatic? But sure, I'll play along, I'll schedule an appointment with my general doctor and see what's causing me to feel like a brick.

I stormed out of the office feeling even crumbier than I did when I walked in, as always.

*

I called my PCP that Tuesday afternoon as instructed and made an appointment for the next day.

Now, I love my general doctor. He has always been attentive and thorough. I trust him wholeheartedly, which is rare for me when doctors are involved. I think it helps that he could be Gene Wilder's twin.



I woke up feeling the best I felt in weeks. Still weak and exhausted, but yesterday I could walk around and felt well enough to take the kids out shopping, even! I didn't have much faith in this appointment, mostly because I didn't think my issues needed to involve my sweet PCP, that these were endocrine issues and my endocrinologist should be the one taking care of me, but I went anyway.



My doctor checked me over from head to toe and actually looked me in the eye when I spoke about how I was feeling helpless and overly fatigued. I told him about my scary heart palpitations and the joint and muscle pain and the bruising. He said, "I'm going to run a boatload of panels on you just to make sure there are no underlying issues, but this to me sounds like your thyroid."

Ha!

My thyroid. No shit. Why can't my endocrinologist recognize that?

Willy Wonka prescribed me a heart monitor that I will wear for 24 hours starting Monday just to make sure I have no underlying heart conditions to be safe, and will run those blood tests.

I felt so great last night that I danced along to Riverdance with Dylan in the basement and was able to dance through a whole song without getting tired. Mentally and physically, things are looking up!

*

I have had enough of my pessimistic jerk of an endocrinologist and so I finally did some research yesterday and called a new endocrinologist to set up an appointment. This doctor has great reviews and has been studying thyroid diseases for 32 years. I will go see him for a checkup at the end of the month.

I feel like a giant weight has been lifted off of me.

Today I will call and request that all of my medical records are faxed over to my new doctor. If the receptionist asks why I am switching doctors I will try to make up some excuse about being referred to the new doctor by a family member because I don't want to hurt anyone's feelings by saying, "I'm switching doctors because you're an incompetent fool."

But I'm really not good at lying so I'll probably just tell the receptionist the truth: Lady, you work for a complete ass.

My hero, my surgeon

I mailed out Katie's birth announcement to my midwife and my surgeon this morning. We only had a few stamps so I chose to send two to the people who are responsible for bringing her into this world first. I discovered this video of Dr. Udelsman when I was searching for his address online and I've watched it a bunch. Even in this short little clip he makes me smile. He is the surgeon who performed my thyroidectomy in October and he was an absolute doll. A pro in his field and a joy of a human being. After I hugged him goodbye for the last time--after he had said, "You're going to live a long and healthy life" to me--he made one request: that I send him a birth announcement when little Kathleen was born. I've had a lot of not-so-great doctors over the years, but Dr. Udelsman was one of my favorites and I'm pretty sure he saved my life that day when he removed my tumor.

Pitying myself

Since Dylan didn't nap yesterday and was still up before seven I started nap time early today. At 10:30 we both went upstairs into our separate rooms and attempted to sleep. I had an appointment with my endocrinologist at 2:15 and so this early nap time left us with a three-hour window before he needed to be dropped off at my mother's. Fast forward to 12:45 and lots of tears later and my child had finally fallen asleep, leaving him with a forty-five minute nap today.

I was already frazzled before I got to that appointment from the napping struggles alone.

When I dropped a groggy Dylan off at my mother's he cried hysterically. Normally I don't make a big deal out of leaving him because he isn't usually bothered and has forgotten I am gone within a few minutes. Today he shed huge sobbing tears and I could hear him as I walked down the hallway so I turned around and scooped him up in my arms as he cried. You're just tired, buddy, I'm coming right back, I promise.

I handed him to his grandma and walked out feeling utterly defeated for the day. And I was on my way to the place where I was first nonchalantly told I have cancer, to see Dr. Pessimistic who loves to say things like, "We won't have any idea as to how far in your body the cancer has spread for months", who gives me a stone cold grimace when I make jokes about my situation, who has not once washed his hands before examining the scar on my neck. I dare say I hate this place. I'll take it further and say that I disdain my doctor.

And as usual he didn't disappoint.

I know that I should shop around for a doctor I like, I know this, but there is something so fragile and delicate about battling cancer that overpowers my need to "like" my doctor. Above all, I trust him. He has built a repertoire with my surgeon, Dr. Saved My Life, and with my future radiologist. Dr. Pessimistic knows his shit and knows my history. So I stay.

Today Dr. P. told me that he had upped my thyroid medication dose from 125mg to 150mg a few weeks ago because my TSH levels were at 10.3 and he wants them at 0.5. The higher the levels the more apt my cancer is to spread through my throat. My last blood test (from Monday) was much better at 2.75. Dr. P. asked me if I was taking my Synthroid with food or not and I told him that I took it first thing in the morning with some of my other medications but never with food. Apparently, I should only take that pill with water, never milk, and always by itself.

"Maybe you just neglected to read the instructions on the pill bottle." he said.

"It's hard to keep everything straight when you're taking 120 pills a week." I replied.

I sat there in our silence, feeling an inch big as he typed up my appointment summary. I specifically remember asking Dr. P. if I could take this medicine with my other pills.

"Recovering from surgery, scar tender still (not surprising), no obvious neck mass now."

He mentioned that he neglected to request a calcium test with Monday's blood work and told me that since my face was twitching a bit I should go back and get more blood drawn to monitor my hypocalcemia. Hmph.

Okay, so I understand why I need a calcium test drawn, I get it, it's important, but now I have to drive out to the blood drawing facility yet again while my mother babysits a groggy Dylan, now we have to pay for two blood drawing appointments instead of one. If Dr. P. was so on top of the game he would know that his patient with a history of hypocalcemia needs calcium levels checked.

I called my mother who assured me Dylan was doing fine after his twenty minute tantrum and decided to get my blood drawn right away so that I could get it over with.

*

At the lab, the man behind the desk asked me what I was doing back so soon since I had just been there on Monday. I mumbled something about my doctor forgetting to request a test and he told me to take a seat in the waiting room. And when he called my name he asked for a Visa or Mastercard to charge $30 for the visit. Wait. What? I don't have a copay. I have never had to pay to get my blood work drawn and trust me, I've been here a lot in the last few months. But the man argued with me and said it was necessary and that the lab no longer bills the patient. Your policy has changed since Monday?????? Apparently, he said, they have been billing my insurance company out of CT but they are technically out of MN so apparently now I owe $30, but don't worry, they might not even charge your card, they'll bill your insurance first.

So I have to keep an extra $30 in my bank account for months until this visit is billed? Why can't you just bill me? We pay all of our bills on time.

I told him I didn't understand. He told me I had to pay them.

The man who drew my blood on Monday was standing there and after I paid he walked me into the exam room. He made a joke about how my vein hadn't even healed since my last visit. My mind was still on what had just happened in reception but I appreciated that he was trying to make light of the situation.

"I'm just really confused about what just happened." I told him.
"Didn't he explain it to you?" He asked.
"Yes but I don't understand." I was trying hard to keep it together.
"You know you can say 'no', right? You can always say no." He said as he taped gauze to my arm.
"No, I didn't know I had a choice."

I thanked the man and facetiously told him I hoped we wouldn't see each other for a while after this as I left.

I walked fast to my car and the second I shut my door I began bawling. I ugly cried. I cried so hard that I was unable to drive. I'm sure my hormones are messed up because of the baby and having all of these cancer appointments takes a huge toll on my optimism. Finally alone in my car I let all of my frustrations out and once I started crying I couldn't stop crying.

I called Sean ten minutes later after I felt I had calmed down a bit, and immediately started crying again.

"I just wish people would stop walking all over me!" I sobbed, "I have fucking cancer and that's enough, I don't need these doctors making me feel worse than I already do!"

I'm sure Sean had no clue how to react but he knows that Dr. Pessimistic doesn't sugar coat cancer and he knows how hard it is to maintain dozens of medical bills. He expects me to call him after my endocrine appointments to talk his ear off about what a dick the doctor was today, but he doesn't expect me to call him crying as hard as if I had just lost my best friend.

*

After picking up some groceries I headed back to my mother's and was greeted by an ecstatic Dylan riding his train towards me down the hallway.

"MAMA!!!!! I MISSED YOU SO MUCH, MAMA! IT'S SO GREAT TO SEE YOU! 'S GREAT TO SEE YOU, MAMA!!!!" Dylan yelled as he jumped in my arms.

Remember how I just cried hysterically in my car? Me neither. I was done feeling sorry for myself the second I saw that little smile run towards me.

"Guess what I bought you, Dylan. Chocolate milk!"

Chocolate milk makes everything better. And knowing that I don't have to see that doctor until the end of March makes me feel better, too.

Tomorrow will be a better day.