One step at a time

Maybe I should play the Lottery. I dropped my iPhone in the bathtub yesterday and after I finished panicking and managed to fish it out of the water, I realized that it still worked just fine. The speakers weren't working but that was nothing that couldn't be fixed by wearing headphones. And then this morning I woke up with a fully functional phone. Speakers and all!

What are the odds?

I've been taking way too many baths. Since my father-in-law brought me gourmet soaps and my aunt gave me a heavenly muscle soak, and since I'm already constantly freezing, I take at last four baths a day. Really hot baths.

Since my TSH levels were so damn high as of last Monday, my doctor put me on the fast track to getting them from a 15.34 down to a 2.5 or less by doubling my Armour levels from one grain to two grains. So I've been feeling pretty lousy, as usual, but it's a different lousy. I'm still overly fatigued and pretty much bed(couch)-ridden but now I'm absolutely freezing on top of that. I cannot warm up no matter how many layers I've got on or how many baths I take or how many blankets I'm under. Last night as we watched Dexter on the couch Sean tucked me under my fuzzy bathroom, in a sleeping bag, under a fuzzy blanket, and then he laid his legs on top of mine and I was shaking I was so cold. This will be a huge benefit to me come summertime on those tropical 80° days. I'm constantly on the THYCA forums and "cold" is a pretty common symptom oddly enough so I'll just be glad that it isn't anything worse. Cold, I can handle.

Little Miss Katie Rhea has been trying to walk since yesterday. She's so cautious, unlike her big brother who was plowing through everything at 11 months and climbing up the ladder of our swing set not long after. She has the muscles to walk but not the confidence. You should see how proud she was last night as she kept taking one step and then another step before sitting herself down. Katie does things at Katie's pace.

Here she is taking one small step for mankind, one giant leap for a baby:



Pardon the boys playing football in the background. She's been taking more steps than that but I haven't been able to catch it on video, mostly because I'm busy helping her to not topple over.

So that explains so much

My doctor's office called this morning. Today is my doctor's day off but one of the nurses wanted to give me a heads up on the results of Monday's lab work. Let me try to explain this...

A person with a normal healthy thyroid should have a TSH or thyroid stimulating hormone level of 0.5 - 5.0. Anything over a 5 would mean that the person is hypothyroid, meaning having an underactive thyroid gland.

A person with a history of papillary thyroid carcinoma should have a lower level--from 0.1 - 2.5--of TSH to keep thyroid tissue growth down so the leftover cancer cells are not tempted to spread.

And my TSH levels as of Monday were at 15.34! Three times the healthy level for a normal thyroid. This means that I am extremely hypothyroid--or lacking in thyroid hormone.

So that looks a little like this:



I'm severely hypothyroid, which would explain my constant exhaustion. There are a ton of symptoms for hypothyroidism--here are 300 of those symptoms--but my biggest is fatigue.

I'm glad to know the reason why I've been feeling just so awful as of late, my body has felt as if it was dying. But it all makes sense now, I'm starving for thyroid hormone. Hopefully when the doctor calls tomorrow he'll know how much extra medicine I will need to lower these abnormal values.

In the meantime, it's a great day to snuggle on the couch with the kids. We bought Frozen on Amazon Prime and are on our second viewing. There is nothing more healing than cuddling two sweet little ones in my arms for hours.

And on his farm he had a pig thyroid...

I saw my endocrinologist this afternoon. My symptoms are getting worse and I'm getting desperate for someone to help me feel like myself again. Usually I don't put much faith in these appointments, each time I go it is the same: My legs don't work. I'm exhausted. Please fix me. counteracted with the doctor's Let's take some thyroid panels. Change your dose of Synthroid. Come back in two months. I can't expect my doctor to heal me in one visit, but there has been no improvement over the last year.



I explained to my doctor that I can barely stand up without needing to rest these days, that I feel as if my body is running a marathon even when I'm lying down, that the muscle fatigue is getting so bad that I have to pull up a chair to the stove when I make macaroni and cheese because I can't stand long enough without assistance. My mind is cloudy and I'm forgetting basic things like where a stamp goes on an envelope or my zip code. And what did I do yesterday? I've got no idea. I can't remember simple short-term details. Did I take my meds three minutes ago? I have to check which day of the week is empty in my pill case. My legs are covered in bruises, my skin is sandpaper dry, I'm freezing. I'm so nauseated that I'm taking medicine to make me not throw up, I'm so anxious that I'm taking more medicine to soothe my nerves, and I've got no desire to eat. My emotions are all over the place and I'm crying at the drop of a hat, filled with anger instantly, and sad that I'm stuck on the couch for seven hours or more a day. But the worst of it is the fatigue. I just can't move.

I dragged myself to the appointment. I typed up my list of medicine and symptoms and waited for the doctor to say Let's change your dose and I'll see you in two months. But he didn't. He looked back in my charts and noticed the pattern: fatigue, inability to walk, brain fog. He said that I'm exhibiting both hyperthyroidism and hypothyroidism symptoms and he has no idea why. While filling out an evaluation, he listed my condition as severe. I cried. I'm exhausted.

So we decided to take a different route. Instead of taking man-made synthetic hormone pills I will be switching to natural desiccated thyroid tomorrow morning. It is the grossest concept to me--crushed up pig and cow hormone--but at this point I will do anything to feel better. Anything.

Here's an awesome article about Armour and its history.

So I'm not going to give up hope. I will get better. I will get through the next few months of tests and body scans and low iodine diets and pig thyroid. Frankly I don't have much of a choice. But I'd rather look on the bright side of this than wallow in the reality that today I was a gray-faced, 102-pound mess, crying my eyes out, begging for someone to make me better.

And how could I be sad with my husband here at home to make me smile? At dinner he said, "Do you realize how excited I'll be if my Love starts smelling like bacon!?!"

I'm still alive

Last night was rough. I go through periods of feeling pretty great followed by some rough patches and I find that usually when I stop taking my thyroid medicine for a few days I start to feel better. It's my body telling me that I've got too much Synthroid in my system and it's a huge balancing act of trying to blindly regulate my levels.

I've been having pretty extreme leg pain this week and last night it escalated beyond my exhausting leg pain and materialized into whole-body numbness. It's hard to explain. My face, arms, legs, and down one side of my back felt as if they were coated in Icy Hot or Ben Gay, this unexplainable numbing burning sensation. I tossed around under the covers thinking that maybe I was lying on a nerve and it was causing those symptoms. I thought maybe I was dehydrated or low on calcium. After two hours of being awake and petrified that I couldn't feel my body, or rather I could feel it but it was burning and sore, I crawled downstairs and wrote about how I was feeling on Facebook. I was terrified. And a part of me wanted to write it down on Facebook so that if I had died during the night people would know why. That sounds extremely dramatic but it was such a scary pain that I envisioned that maybe I had a blood clot in my legs or I was going into hypocalcemic shock and my heart would give out and I would pass in my sleep. I remember looking at a picture of Kate as I fell in and out of consciousness and wondering if she would remember me if I didn't make it through the night. I was ready to wake Sean up to take me to the hospital. But then I thought, none of my endocrinologists can help me without changing my Synthroid dose and telling me to wait a few weeks to see if I feel better so how would a hospital be able to fix me? So I drank some water in case I was simply dehydrated and fell back to sleep around 3AM.

I woke this morning feeling numb in my arms and legs but no longer in my back and face. An improvement. When I heard Kate giggling in her crib I opted to call for Sean to carry her downstairs because I didn't trust myself to bring her myself. Sean came up to check on me a few minutes later and my feet and hands were extremely clammy and I looked gray in the face. I'm not sick, this is all normal thyroid cancer stuff, but basically--as Cancer.org so nicely explains, "Extreme tiredness, called fatigue, is very common in people treated for cancer. This is not a normal tiredness, but a bone-weary exhaustion that doesn't get better with rest."--it feels like all of my bones are bending backwards. It feels like I'm recovering from running a marathon and I can never fully recoup.

So I called my hero, my Pops, and asked him if he could bring Dylan to school for me. He was here right on time and I spent three straight hours on the couch with Kate, not moving.



Pops came back with a container of homemade minestrone soup from a friend of mine at preschool dropoff and dropped Dylan off when school ended. I'm still having a hard time walking today but nothing like I felt last night and upon waking.

Since it was near 50° and I was starting to feel better we dressed up and played in the backyard.












I love that we bought Dylan a $229 dune racer and he was more excited to rake the yard. That's my little worker bee! Dylan has been enjoying a new reading app called Endless Reader. It's extremely addicting and very fun.



Let's see, what else is happening around here. Oh! We watched that Julia Louis-Dreyfus/James Gandolfini movie Enough Said last night and loved it. We watched the Hangover III this week, too and hated it.

Our saving money efforts are coming along nicely. We budget $400 for groceries and gas every two weeks and we always go over that because I spend frivolously at the grocery store but with the new Food On the Table app we've been using we were right on budget this month with fresh homemade meals every night. I started writing down everything I spend because I am horrible at dropping $1 here and there and then it all adds up. We have big plans for the future and not too many credit cards to pay down so I'm determined to help Sean out with building a bigger savings account. And I made $262 on EBay yesterday as an added bonus. We make a decent living but we could make a better one if I paid attention to the needless material items I buy. I also called our cellphone provider and managed to drop our bill $60 by analyzing our plan and dropping the data feature from my iPhone. So far I'm really enjoying not having internet access outside of the house, I find myself talking to the kids more, and looking up more. Sean made a comment to me this weekend about how he hasn't seen me in the car for about two years when I made an observation about some trees we drove by. That's sad. I always sit in the front seat and bury my head in my phone when we drive anywhere, it's become a bad habit and it actually is soothing in a weird therapeutic way. So I'm liking the idea that I can't do that anymore while we save $360 a year on just my data alone. This year we cut cable, paid off both of our cars, added a beautiful and tiny new tax deduction to our family, reduced our cellphone bill, refinanced our house and with all of those easy steps which really don't change our life too drastically (aside from the having a baby part), we are saving a thousand dollars a month easily. That's a nice lump of unwasted money that we can tuck away for the future. If you'd like to talk to me about the steps we've taken to cut unnecessary expenses feel free to reach out and I'd be glad to discuss it further.

Now all I need to do is fix my health. Baby steps, baby steps.

NYE

Kate woke up this morning wanting to stand. She climbed on me as often as she could and used me to push herself onto her feet. She wants to stand. I'm so proud of my baby.



Not the best camera angle and if you notice Dylan mumbles "What the [expletive]!" He thinks that language is hilarious. I don't find it funny. He says he heard it at Jake's Wayback Burger and he knows better than to say it in my presence. However, if I call him on it he makes up fake words. Smart little spitfire.



The kids were in bed by seven and Sean is extremely sick and hasn't seen the ball drop in years anyway so I'll probably end up watching it alone if at all. I'm pretty beat myself.

So. Resolutions. I don't usually make them but this year I have one big one. I am going to feel healthy. My body hasn't worked at all this year but I'm slowly starting to feel better. And I'm going to keep feeling better. I should be going for my whole body scan in May to see how much cancer is left, if any, and I might have to go through the radiation again but I'm very hopeful that we got it all. I have my calcium levels under control now, which means my remaining parathyroid glands are recovering, and I'm taking so much vitamin D that I don't even mind winter. By this point I'm usually craving spring. My legs are not perfect but they're working. Things are seriously looking up. And I plan to stay on the up train.

2013. I gave birth to the most beautiful baby girl. I went through radiation and separation from my babies for a week. I lost a good friend to cancer. I welcomed two beautiful little nieces and one handsome little nephew. My baby boy started, excelled, and fell in love with preschool. And on the last day of the year our baby started standing.

Cheers to 2014!

Hooray, Today!

Last night left much to be desired in the sleeping department. I crept into Dylan's bed at ten when he started to whimper from a bad dream, woke up to Kate crying for her bottle at 10:30, snuck back into Dylan's bed when he had yet another bad dream, woke up alone in Dylan's bed to the sound of Kate crying for her morning bottle at the ungodly hour of half-past-five, and since both Sean and Dylan were in our bed which is next to Kate's crib all four of us were wide awake at 5:30AM. I'm pretty sure I was fumbling around trying to find the reset button for today.

But...

Today is turning out to be lovely. I'm exhausted, absolutely, but today is the first day in over a month that I don't feel sick (yet) to my stomach! I bought some lovely fiber mix that you stir into your drinks and I have not puked or crapped myself today. Hooray for small victories. I also have been abstaining from taking my thyroid drugs because my suspicion is that I am overly medicated which is causing these debilitating side effects. I am supposed to have very low TSH numbers for a few years so that my cancer cells don't grow back, but this low is too low. So a few days off of my meds, still taking all supplements, adding fiber, has given me this one very relaxing day in which to relax my stomach.

And since we barely slept at all last night both kids are doing this...



...I was even able to sneak in a short nap.

*

Yesterday was the father/son breakfast at Dylan's school. He was so excited for his daddy to come to school with him and was all like later, Ma! as they were heading out the door.



The kids sang songs for the dads and did crafts with them. Dylan absolutely froze on stage for all of the songs and seemed to have an extreme case of stage fright until the Chicken Dance came on and he let loose.



(He's the one in orange)

He obviously has inherited my dancing talents. Here's to dancing boys and good health!

The shell of a woman

Friday was the one year anniversary of my thyroidectomy and as much as I felt accomplished and glad that I no longer have a giant tumor in my neck, I was defeated. I've been feeling so sick lately that I broke down in tears this morning when someone asked me how I'm doing. I feel as if I'm inhabiting a lifeless body and I cannot find the right balance of medications to make it better.



It sucks. Cancer sucks. Living without a thyroid is hard. But I'm so tired of hearing myself talk about not feeling well that I don't even want to write about it. Most likely the recent cause for my lack of blogging.

Sean is going to a father/son breakfast with Dylan at school tomorrow morning and I am so glad that I'll have two hours with Kate in our pajamas where we can just eat oatmeal in front of the boob tube and not have to leave the house.

Sickly or not, I'm always thankful that I've got these little ones to remind me to lighten up when life gets a little tough.



Sometimes it's impossible not to smile.

I do this to myself

The last time I found myself turning to Google to diagnose myself I swore that I had throat cancer. I texted my close friends and my sister and sister-in-law who are nurses and sent them a picture of the lump protruding from my neck; Do you think I could have cancer? I Googled some more. I stood on my bathroom vanity with a flashlight and obsessively looked down my throat, feeling the lump near my collarbone over and over and over. Photographing it. Googling more. I thought maybe I was just being a hypochondriac and almost didn't even get that lump examined.

After several ultrasounds and biopsies and one doctor telling me that in all of the fine needle aspirations he's done only about 3% of the nodules he sees turn out to be cancerous, I was diagnosed with thyroid cancer.

Last night after two episodes of Breaking Bad, one containing a pretty graphic scene of Walt's tumor removal, I sat up in bed feeling terrified. Something clicked in me and I started feeling the gaps between my ribs, tracing my ribs. I have had a dull ache in my ribs since I was pregnant with Dylan three years ago. That rib pain was severe for both of my pregnancies and it's remained a constant ache. My PCP said, "It's just pregnancy" and so I've kind of learned to ignore the pain over the years. I only feel sore when I sit a certain way or if I rub my ribs too much or if one of the kids sits on my stomach.



That's where it hurts. I've been staring in the mirror and can see that it is a bit larger than my right rib but I couldn't get a very clear picture of the size difference. (Ps. This is a photo of me sticking out my ribs as far as possible. I'm bony but not that bony)

The Internet is no place to go when you have cancer already and you think maybe you might have something else wrong with you because you might stumble upon gems like this:

"Each year, about 100,000 Americans with cancer find out that the cancer has spread to their bones. This is called bone metastasis, or "bone mets," and it's different from cancer that starts in the bone. Cancer that leads to bone metastasis may have started in your breast, your prostate, your lungs, or other parts of your body. Odds are, bone pain brought this metastasis to your attention. You may wonder how this could have happened, especially if you received early, aggressive treatment for your cancer and any "renegade" cancer cells. And you may wonder what's on the horizon for you. Cancer that has metastasized to the bone is incurable but treatable." (source)

Holy shit. Do I have bone mets? That means that my cancerous thyroid cells travel through the bloodstream to the bone and form a new tumor. But wouldn't that show up on my whole body scan? A WBS picks up a tracer dose of radiation and detects the uptake of my thyroid cells so wouldn't that show a bone metastasis? Google Goole Goole. Apparently Google says "nope", I'd need a bone density scan.

And then I think, well maybe I have osteosarcoma. A dear friend of mine died from bone cancer just a few weeks ago. She discovered her tumor after feeling hip pain post pregnancy. Today I was sitting on the couch feeling my ribs and thinking to myself, "You're just freaking out about nothing. It's a muscle strain or a fractured rib, not cancer" but instead of allowing myself to brush this fear aside I called the doctor and scheduled an appointment for Monday. Something that Scarlett wrote to me before she died is going to stick with me for the rest of my life: "I'm so happy you're doing so well post treatment. Just make sure to keep an eye on things and if you feel like something's not right don't be afraid to see your doc or at least talk to his nurse."

We've already spent so damn much on medical bills that any treatment I receive from now until the end of the year is at a greatly reduced cost so there is absolutely no reason for me to wait here, terrified, thinking that I've got an incurable cancer. This could turn out to be something as simple as a strained muscle or a fractured rib. My surgeon said something to me that gets me through moments like this. Back when I met with him to remove the stitches from my neck, about a week after my thyroidectomy, he said, "Your margins are clear. I think you are going to live a long and healthy life." And he is a total thryoid cancer expert and is chairman of surgery with every qualification under the sun, so I'm going to trust my surgeon and the results of a new body scan and not rely on Dr. Google.

It's probably nothing. 

Luckily Dylan knows where we live.

Last night, in my dream, I was a student. I was sitting at my desk--those tiny brown metal desks with the chairs attached--staring blankly at my teachers. I raised my hand and whispered to one, "I can't remember what is happening. I don't understand what is going on. I don't remember." I explained that I have thyroid cancer and the brain fog is getting worse. The teachers continued on with the lesson trying to repeat themselves as much as possible so that I would remember, but I was lost.

The irony of remembering the dream about forgetting made me chuckle a bit upon waking. I remembered even the smallest detail down to what I was wearing.

Removing cancer was the easy part. Now I've got to figure out how the hell to live without a thyroid. So far I'm not doing so great. The two things bothering me the most are my legs and my memory. I can't remember what I did three minutes ago sometimes. I had to ask Sean what our daughter's birthday was the other day. That's pathetic. I do, oddly enough, remember wacky things like our network key to our internet which is ten random digits, Sean's social security number, the name of a man he worked with back in 2007 that I never met. But I don't remember the drive to the store or what I was talking about a few minutes earlier. Sometimes I forget the beginning of a sentence by the time I make it to the end.

This is all frustrating more than anything. How am I supposed to be able to hold down a career when I'm ready to go back to work? How am I supposed to hold a conversation with anyone? Oh what a journey this will be.

*

Today was the first day that Dylan showed signs of being a bit weary of preschool. He calmly asked me if I could go with him into the building as we drove to school. I told him that I would be waiting for him when he was done and he nodded and told me that he likes school.

We were second in line at the drop off and the kid in front of Dylan totally freaked out. Tears, screaming, petrified to go into school. Dylan just stood there watching him with the biggest WTF kid look on his face. All of these little guys are a bit unsure of what to think of preschool. One of the teachers scooped up the crying boy and carried him inside and yelled back to his parents, "He stops crying as soon as we start, trust me!".

Dylan had a good note waiting in his folder when he came home. The teacher had written, "Dylan knew his address when I asked him! :)" Yay, Dylan! I'm so proud. He and I worked on memorizing our phone number over lunch and he was awarded one apple Teddy Graham each time he recited our number.

Ah, parenting.

Running on empty...running on...

Okay, I give up. We're down to the last half hour before Sean is home for the weekend on a week where the sickie two-almost three-year-old was awake pretty much every hour every night since last Friday. He's feeling much better now and I'm feeling absolute exhaustion.



Kids are like Energizer bunnies.



I put on a movie and the two of them are creating a very loud, very chaotic environment in the living room. I'm fine with it as long as no one smashes their head into a wall by mistake, and there have been a few near misses as Dylan is being Tarzan in Katie's doorway bouncer. You're on your own to fend for yourselves, kids, Mama is tuning out until Daddy gets home.



Not only did Dylan sleep terribly all week and burn up a ton of energy at school this morning, but he also helped Grandpa install new stairs out back.



Seriously, he's not tired? I'll have what he's having. I'm looking forward to early bedtime tonight and having my love home to help out so I can get some shut eye, too.

My endocrinologist's office called and said that my bloodwork came back with an even lower TSH result than two weeks ago and so they are putting me on a lower dose of thyroid hormone to raise my levels. Technically I am extremely hyperthyroid but my body is strangely acting hyPOthyroid instead--I'm starving for energy. Thank God for my father-in-law who is always here to help me when I have health issues. He's here taking the kids faster than I can get off the phone with him. He says, "Put your feet up, take a nap, relax." I'm so so so lucky to have him. We all are. My mother is the same way. I know that if I don't feel well I can bring the kids over to her and she'll watch them for me so I can rest.

At this point I am just tired of being tired. I'm tired of saying, "I'm tired", writing "I'm tired". I'm optimistic that when my TSH levels are raised I might start to feel better. I'm tired of thinking about cancer and the side effects. I'm tired of taking giant horse pills. I'm tired of feeling eighty. I'm tired of falling over because I can't make my legs work. I'm tired of losing my hair.

So I'm going to forget about being tired. I'm looking forward to spending the weekend with all of my loves, including this weenie:



No matter how hard of a week I've had, when the weekend comes everything is right with the world. I always tell Sean that my love tank is filled over the weekend and starts draining every Monday when Sean goes back to work. By Friday I am craving our family to be together again and my metaphorical gas light is flashing. As soon as Sean walks in that door on Friday night life gets a million times easier.

And would you lookie here...guess who just walked in the door!

Joy and sorrow

Katie learned how to clap! As impressing as clapping is for a baby, I'm more excited that she is starting to understand us. She recognizes the word "clap" and sometimes says "Aaaaaaaaaay" after I gleefully exclaim, "Yay, Katie!"



Dylan didn't get to go to school again today because of this damn flu bug he's still fighting. His fever is down to a 99.5 but now he's got a ridiculous cough. He needed another rest day to fully shake this thing. Kate is still hanging on with no fever and a clear runny nose.

In good news, I saw my endocrinologist yesterday to figure out why my legs have stopped working this month and we determined that since my thyroglobulin are still at < 0.2 my cancer is most likely not spreading.  I like to hear that.

As far as my month of weakness, the doc isn't sure.  He tested my levels again and said that some people do great on a 0.03, some don't.  My levels should be 0.1 to 2 as a cancer patient because the higher my TSH the more likely the cancer cells will grow, so low is good.  However, 0.03 might be too low for my body.

Whatever the case I still very much like my doctor and I feel confident that he will take good care of me.  I like that he is thorough.  Two thyroid panels in two weeks.  My kind of doctor.  In the meantime I'm staying on my 150mcg of synthroid and taking it easy.  I feel better this week than I did the last two and I think maybe I'm on the up and up.  Let's see what my levels are in a few days and maybe we can find a happy thyroid balance.

*

Today is the twelfth anniversary of September 11. Those of us who are old enough to remember will never forget where we were that day as we watched those planes fly into the towers. I was working in the music library in college when another student came in and told us about the first plane. All of my classes were cancelled, except for choir. It was our first day of concert choir rehearsal and our esteemed conductor walked into that practice room with a cell phone in hand. He was waiting to hear from his daughter who worked in the trade centers. He handed us an 80-paged copy of Mozart's Requiem and told us that we were going to perform this that weekend.




That whole week is a blur to me now. The concerts we performed around the state to show our support and respect are a vague memory. But whenever I hear Mozart's Requiem I am brought back to that place, watching those towers fall and feeling in my soul the aftermath of so much suffering.

Recording my symptoms

I don't want to turn this into a thyroid cancer blog, but I like to be able to surf through my past blog entries to revisit how I felt during my medical journey. 

For instance.  I just read back to June to find out what my levels were at when I felt my worst. My TSH was a 3. To keep cancer from spreading TSH is ideally kept at a .1 for the first few years after treatment.   But having a TSH of 3 felt horrible and I had just dropped from a severe hypothyroid state in preparation for RAI treatment in which my TSH measured 112. To put that into perspective, anything over a 5 is hypothyroid. 

I'm lying here in bed in crippling pain.  From my shoulders to my fingertips and from my knees to my toes.  It feels the way bones feel after you break them and they get that dull ache when the weather changes. Except I feel it in all four of my limbs. And when I get out of bed I am hunched over in a ball as I try to get my feet to work. What. the. heck.

I had labs drawn this morning but I won't know the results for another week because testing Tg takes a while.  I lowered my synthroid dose this morning because I suspect that now I am hyperthyroid. 

This is so odd. I can be fine and walking around one moment and the next I am in so much pain that it hurts too much to sleep. 

I keep saying that all I need to do is hold out a few more days before my results come back and then we can adjust my medicine accordingly. I felt this same way back in June and I was running miles around the lake for all of July.  Am I going to go through these painful periods often?  Because I'd like to be able to learn how to treat them. 

Just a few more days. Maybe tomorrow I'll wake up with a bunch of energy again.  That is, if I ever get to sleep. ;) 

Hello, thyroid.

I called my endocrinologist this morning to request a thyroid panel. My levels are off and I'm quickly regressing into the sorry state I was in last June. I started having soreness in my feet last week when I woke up which could be compared to how your feet feel after standing for 24 hours, a weird ache and difficulty walking. I was afraid to carry Kate downstairs in case my legs gave out. I had a racing heartbeat last night which is another sign that my levels are off, and for the past few days I've had dull pain in my arms and legs and numb hands and feet. If you touch me, I bruise.

These symptoms really scared me back in June because I thought something was seriously wrong. Except as soon as my doctor upped my thyroid hormone dose I instantly felt better. So now I know to call before the pain and fatigue get worse and hopefully a small adjusting of medication will make me feel better.

I crawled upstairs and into bed last night feeling so ungodly sore that I couldn't bear to stay awake any longer. Ding ding ding! Time to call the doctor.

And secretly I'm excited to have my levels checked again so they can tell me if the cancer is spreading or--fingers crossed--not spreading. We want to walk Dylan to his first day of school on Wednesday so my goal is to feel better by then so I don't have to be the one getting pushed in the stroller. Pops is coming over today to help me out with the kids so I can take it easy. I really don't have the strength to carry anyone at the moment and luckily their grandpa is more than happy to snuggle up.

So there is no reason to worry until there is reason to worry. All I need is to have my trusty doctor look at my TSH and calcium and tweak--not twerk--them so that I can feel better. Sean says I just need to go running to feel better. If I could gather the strength to lift my arm or move my legs, maybe I'd go running. I'm going to set my sights a bit smaller and work on finding the energy to walk first.

Ten months after a total thyroidectomy

I suppose I should post a cancer update.

My ten monthiversary of my total thyroidectomy was yesterday. I was so busy that I completely forgot about it, which--after these past ten months--feels awesome that I can simply forget about my cancer.



I've been feeling really great since the middle of June. June was a hard month and I found myself almost unable to walk because I was so fatigued. I needed to lean on my loves when I walked anywhere and I couldn't get off of the couch. My heart was racing and palpitating which led to needing to wear a heart monitor to make sure my hypocalcemia wasn't causing my irregular heartbeat. I felt miserable. And then my doctor increased my Synthroid dose from 125 to 150 and I quickly felt a huge improvement. These days I've got enough energy to go running! At one point I was taking 130-something pills a week. Now I am down to 56 measly pills per week!

And my scar is barely noticeable:



Here's a progression of my thyroid scar from six days after surgery, to two months, six months, and today at ten months.



My current plan of action is just to wait. The tumor was removed last October, I did RAI in May, and now my doctor said I don't need to come back until next year for my whole body scan. I don't know, I feel like I should be checking up sooner, a year feels like a really long time to wait especially since my breasts showed a lot of iodine uptake on my last scan. Because of the RAI I have an increased chance of breast cancer and leukemia and because I had just weaned Katie when I had the radiation I have an even higher chance of developing breast cancer. Maybe I'll call my endo in a few more months and request a blood test to check my thyroglobulin levels--if my TG levels are rising the cancer is growing--if anything it would give me peace of mind.

I've been cheating a bit. I'm supposed to take six calcium pills a day and I've only been taking two before bed. So far I am not feeling any tingling or heart palpitations so I'm hopeful that my parathyroid glands are finally recovering. Beating the hypocalcemia would sure make life a bit easier but I'm pretty sure I will always have to take calcium supplements.

The worst part about living day-to-day with cancer is taking my Synthroid. I take it first thing in the morning and cannot eat for 30 minutes after I take it and am not supposed to have calcium--like milk--for four hours afterwards. So when my husband wakes up and makes a nice surprise breakfast for the family I have to take my pill and wait before being able to eat. It's a small price to pay for a long and healthy life, but still it's frustrating to be so hungry and not be able to eat anything.

My endocrinologist says I should keep my stress at a minimum, get plenty of exercise, and eat healthy. Yesterday I ate cookies and milk for breakfast and lunch. I was busy running around, but still, inexcusable. Tasty, but inexcusable. It's hard to realize that I still have cancer when I feel so great. I'm no longer in pain, in isolation, or in the hospital. I'm so thankful that this year is almost over. I was diagnosed with cancer one month to the day after I turned twenty-nine and in two weeks I will be turning thirty. Twenty-nine was the worst year of my life thus far--aside from giving birth to my sweet little girl--and I'm praying for a clear WBS next year.

In the meantime I plan on living.

Alive

Mother Nature was stunning today.

First, on our sunset run, everything was golden or green and reflections bounced off of the mirrored lake.










Second, I couldn't fall asleep tonight so I slipped outside with a sweatshirt and my camera to photograph the stars. The annual Perseid meteor shower is peaking overnight. I saw four meteors--two huge bright ones--but I didn't capture any with the camera. Although the sight of the stars alone is breathtaking.



I came inside after only an hour because I started hearing some rustling in the bushes by our back fence and remembered that we smelled skunk a few nights ago. It's getting cold out anyway and I'm going to take a midnight bath.

Today I found a sense of peace that I haven't felt in a long time. It's hard to describe. It is the feeling of watching a loved one suffer through a serious illness and finally pass peacefully; the end of a battle. This overwhelming feeling of joy and good health I've been carrying with me since mid-June has replaced the woes of cancer treatments and 132 pills per week. I wake up in the morning wanting to accomplish things rather than struggling to get off of the couch.  I feel alive again.  There is something to be said about lying under the stars alone, it brings your thoughts to focus.

“Stars open among the lilies.
Are you not blinded by such expressionless sirens?
This is the silence of astounded souls.”
― Sylvia Plath, Crossing the Water

Suddenly everything is as clear as today's reflections on the water and everything that ever mattered to me is right here in front of me.  I feel stronger than ever.

Exhaustion relapse

I've had a ton of energy since mid-June but I've been exhausted for the last three days. I'm probably just recovering from vacation, maybe I overdid it a bit. My hair is also falling out in clumps. Huge clumps. I'm not sure if that's from the radiation or from being five months postpartum or both. I pretty much count the minutes until Sean comes home from work so that I can sneak upstairs and take a nap. And then of course I'm up half the night because I took a 6PM nap. I'm hoping my energy comes back right quick. Next week will be three months since I had RAI and other than the past three days I have felt like a million bucks. I've got my fingers crossed that this is just a post vacation side effect. Zzzzz.

I have some good news

Today the receptionist from my new endocrinologist's office called me with my lab results.

"Your TSH is at a 0.10, which is good for you."
"Yes, I am feeling well on my current dose."
"And you have no Thyroglobulin, so that's great! It means there is no thyroid left."
"Wait, so does that mean I no longer have cancer?"
"You still have cancer, but your thyroid tumor is completely gone. It'll take a few months for the radiation to kill off all of your cancer cells."
"I don't quite understand. So what is my next step?"
"As long as you are feeling well and don't need your meds adjusted, we will see you in a year."

A whole year.

I'm not in remission yet, but I'd say I'm in recovery. I'm recovering. And now I get to live life as if nothing happened. At least for the next year.

So glad.

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:



*

Everyone else is asleep. I'd better go put this cute little duckling to bed, too.

 

Lub Dub, Lub Dub

Two weeks ago I spent two-and-a-half hours at the doctor's office--shirtless--as a nurse made three hundred attempts to get this holter monitor to work. She'd hold up her cheat sheet, stick a few stickies on my chest, attach the electrodes color-by-color, turn on the monitor, wait for the blinking green light.... yellow, yellow, yellow.... remove all electrodes, remove batteries, remove memory card, reattach stickies and electrodes, wait for the blinking green light.... still flashing yellow, rinse and repeat. After that unsuccessful appointment I was glad to hear that I wouldn't need to go back for some time to try again to put on this heart monitor.

This morning was round 2, and the nurse was able to get the thing to work on the second try.

Of course two weeks ago we weren't in this heatwave.

This monitor is just a precaution, really, because every time I go into the hospital for thyroid cancer issues my heart overreacts and I'm hooked up to a bunch of EKG machines and blood pressure cuffs. When I mentioned to my PCP that I have pretty rough palpitations now and then he prescribed a 24-hour holter monitor "just to be safe".

And since heart disease is a number one killer of women, I am more than happy with being safe. Especially because I experience heart pain often and am hypocalcemic. A lack of calcium affects muscles, the heart included.



I'm supposed to be writing down all of my activities for the next 24-hours, recording all exercise (yeah right), resting periods (fingers crossed I get eight hours tonight), sexual activity (who would have sex while wearing a heart monitor??), and the like. Here's what I've got written down so far:

10:30AM: took the kids for a walk in the thousand-degree weather to the town hall. Pushed one child in a stroller while wearing a baby in a moby wrap.
11:30AM - 3PM: Photo shoots and wrestling kids to eat lunch, wash hands, use potty, etc. etc.
3:00 - 6PM: Played with kids, watched movie, had dinner. Blah blah blah.
7:46PM: Son took first poop in the big boy potty on his own. No assistance. I expect to go absolute tachycardic at 7:46.

And now it's time for rest.