Homebound

Today is the first day this week I actually felt well enough to get off of the couch. Good thing, too, because this house needed cleaning like you read about. Dylan has been sick with a cold since Sunday and will not be well enough to return to school until at least next Monday, and with all of this snow and my normal thyroid fatigue issues we haven't left the house since Saturday. The kids don't seem to mind sticking around the house, especially since they've been spoiled with gingerale and popsicles for their sore throats.

I put this blog together last night when I couldn't fall asleep and spent about an hour this morning importing all of my thyroid posts from past blogs. I had quite a ride down memory lane reading all of those old posts. I've come to realize that my last two doctors had absolutely no idea what they were doing and my new doctor, well, she's amazing. On my first visit with her I told her how much medicine I was taking and she explained that I was taking double the dose for a person my size, that the reason that my legs completely stopped working and that I felt like I was being poisoned was because in actuality, I was being poisoned.

I weighed myself today. 103.5 pounds!! That is the most I've weighed in months! Even though I'm still feeling the effects of chronic fatigue, I am doing so much better than I was and I'm just so happy I found my new doctor.

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&deg 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.

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.

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!

Recording my symptoms

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. 

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.

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.

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.

Not feeling my best

Tomorrow morning I go to see my endocrinologist. I'm hoping for a miracle fix. I am getting weaker by the day and am hoping my bloodwork reveals the problem.  These days I am active for ten good minutes at a time and then I need an hour to recover.  Moving my arms and legs hurts.  I spend most of the day unable to feel my hands and feet.  I'm tired of feeling tired. 

I don't have much to write about mostly because I can't physically do much except tread water keeping my children fed and clean and happy.  I don't pray often but I will be praying tonight.  I can't take much more of this pain and exhaustion. 

If you pray, please do so for my healing.  I could use extra prayers now. 

A Little Bit of Everything

We went grocery shopping tonight and I was so weak that when we got home I had to lie on the couch for about three hours until I was strong enough to use my legs again. I took a bath just now to ease the soreness and I kept thinking that I am just so happy. I don't care if I'm having a lot of physical struggles, I am simply thankful that I don't have to deal with any more procedures for a while. I don't have to have surgery or be on special diets or be without medication or be in isolation. For now--at least until my doctors appointment on Tuesday--I can just relax.

My dear friend Greg introduced me to Dawes tonight. He compared them to Jackson Browne who is by far my favorite artist and he might be right; Jackson's lyrics are legendary and Dawes has some pretty great ones from what I've heard so far.

This is the song I've been submerged in:



Dylan is asleep by now and Sean and Katie are watching a hockey game together. The dogs are panting and we'll be going up to our freezing cold air conditioned bedroom soon. Weekends are so lovely.

I'm sore and weak and tired and I feel more like myself than I have in a while.

Beat beat drums

That's the thing about sharing a bedroom with an infant during a heat wave, you can't crank the air conditioner up (down?) to frigid climates.  Sweet three-month-old Kate--who normally sleeps right through the night--woke up at 2:30 to eat, feeling a bit cold to the touch, and my husband is bundled under a million covers in a ball next to me.  The air conditioner says it's 69 degrees in our bedroom.

I'm sweating.

Yesterday was a pretty horrific day for me health wise.  I woke up without much pain in my muscles which was awesome and rare for my body, but I woke up with a migraine and my heart was beating out of my chest for half the day.  My father-in-law took Dylan hiking and to the library and park for a few hours and I sat on the couch with one hand on my heart and the other on the phone ready to call 9-1-1 if my heart palpitations worsened.  

My heart rate was at a low 64 when I checked my pulse but it was so irregular that it would beat, beat............wait a few seconds as if it had completely stopped......then beat again.  I was freaking out. My heart did not feel well. As long as I was lying on the couch I was OKay but the second I sat up I'd get faint and woozy and nearly pass out. 

I called my endocrinologist who couldn't figure out if my recent muscle ache symptoms and now my heart palpitations were a sign of my hypothyroidism or my hypocalcemia or both, so he is sending me for lab work in the morning. 

I overdosed on calcium pills in case my levels were low because that could put me into heart failure, and then I drank a ton of water just in case I was dehydrated.  After about five hours of feeling terrified and just not well in general, my heart started to regulate. 

I'm glad Dylan wasn't home today.  I wouldn't have been able to care for him in my condition.  And Kate simply slept the day away in between feedings so she wasn't any trouble. 

The thing about recovering from cancer is that you have no idea what is normal.  I felt nice and cool lying on our couch in the heat wave yesterday but the baby was hot to the touch so I eventually turned on the air conditioner and was forced to ask my father-in-law if our house felt hot or cold to him when he brought Dylan home. In addition to having no concept of temperature I have no ability to taste thanks to good old fashioned radiation; I either taste metal or nothing at all. 

But listen, at least my heart feels better now.  I can handle muscle aches and feeling too tired to stir the pot on the stove without needing a break, but I cannot handle my heart failing. 

Ouch

I'm tired of complaining. 

The first thing I said to Sean this morning was, "My body hurts." and I immediately wanted myself to stop talking.  I feel like I have to tell my husband every time I don't feel well so he doesn't just think I'm being lazy but even I don't want to hear myself complain anymore. 

I was surfing through one of my cancer support group forums and several people were mentioning that they didn't feel well after having RAI treatment because it takes so long for our bodies to decline out of that severe hypothyroid state.  I have to get my body from a TSH level of 112 down to a 0.1. I don't expect it to drop overnight but I didn't think I'd feel this weak.  I get tired simply putting my hair in a ponytail or giving the baby her bottle. My legs feel as if they weigh a billion tons, they are painful and bruising any time I bump into something. 

I'm lying in bed hoping that the kids will take a nap because I simply don't have the strength to move anymore. 

Ah, the joys of cancer. 

A quick update

I have zero energy today. Here we are at 20 days past my radioiodine therapy and I'm still feeling incapable of moving. My arms even get tired after doing simple tasks like putting my hair up in a ponytail. Some days are better than others, of course, and we've had so much fun playing outside for the last two days that I am appreciating this cool rainy Wednesday and letting us recuperate a bit indoors. I've earned a strange new side effect from the treatment and that is loss of taste. Unless my food is spicy I don't really taste it. I finally have two napping babies so I'm going to take this opportunity to sleep, too.

One week after RAI

I had a second whole body scan (WBS) today. I thought maybe the scan would give us some insight as to how much cancer is left in my body but apparently all the doctor wanted to see with today's scan was that the radiation is in the targeted areas. They did mention that I have a lot of uptake in my breasts and took an extra lateral photo so that they can compare it down the road, but this is to be expected because I had a baby so recently and would have traces of breast milk which would soak up the radioiodine. So I was told that my endocrinologist would be following up with blood tests to check my levels and discuss our next steps.

The hospital staff gave me a Worry Woo stuffed animal to take home to the kids. It made everyone's day around here.



I'm extremely fatigued tonight and already took an hour-long nap before bed. Here's hoping the kids get some decent sleep tonight so we can all get some rest.

My radiation levels are at a very safe 0.4 at three feet away and 1.9 at the neck. They should be under 2 to be safe for baby cuddling so I've been cleared to hug up on the kids again! Although my RSO says not to hold her at my throat for long periods of time just to be safe.