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.

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!

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.

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.

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:

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. 

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.

After treatment

I'm still feeling extremely weak and am afraid to drive. I'm sure that my current state has nothing to do with the radioiodine therapy but more to do with the fact that I am still going to have to climb out of my hypothyroid slump for the next few weeks. A normal thyroid (TSH) should register 0-5. Anything over a 5 is considered hypothyroid. Last week, after three weeks of Synthroid withdrawal and on the low iodine diet my TSH was at a 112! Obviously it will take me some time to get that level as close to zero as possible.

I'm on a bit of a roller coaster ride because I wake up in the morning feeling pretty awful: nauseated, exhausted, weak, foggy. But then mentally I get so excited because I know that Sean and the kids will show up to the hotel to spend a few hours with me and suddenly I don't give a shit if I feel lousy, I am lugging diaper bags and an infant car seat up three flights of stairs. When I'm around my husband and kids I can't help but smile the whole time and feel so filled to the brim with joy. As soon as they leave I crawl into bed and stay there until the next visit. By the end of the night my voice is very hoarse and as far as I can tell this is the only symptom of the actual RAI treatment.



I haven't weighed myself--I don't think we own a scale, even--but I would bet the bank that I am down below 100 pounds. Without diets and radiation and the like I struggle to stay above 103 and after this ordeal I have loose skin on my stomach and even on my hands from where I've lost weight. I've been keeping my hotel room at 75 degrees but am constantly freezing. When I get too cold I head down to the parking lot and sit in the car with the heat on.




I've been frequenting the ThyCa Inspire forums a bunch lately and chatting with people at all stages of thyroid cancer, from diagnosis to treatment to recovery and remission. I never meant for this blog to focus so much on my battles with thyroid cancer but after scouring the Internet myself trying to find pictures of scars and plastic-lined hospital rooms I realized that the stories were few and far between. The variable of the unknown is scariest for me in this journey and I needed to see photos of what my neck might look like, to hear how I should feel after losing a thyroid, to know what to expect with my treatments, to inquire if I would turn into a human glow stick. I stumbled on a few blogs in which my fellow ThyCa friends documented everything with their cell phone cameras and I stalked those pictures of lead-lined pills and celebrated those monthly post-op photos with these strangers. Suddenly I felt less alone and much calmer.

So I want to return the favor with this blog. I'm sure some of you are quite over hearing about what I've eaten each day and fast forward right through to the next post on your blog readers, but I hope some of you can feel a little bit better at night knowing that this cancer thing is very doable. We can do this. Sure I feel a little tired now, a little skinnier and a little hoarse (neigh), but friends, the color is coming back into my face and the joy is back in my heart.

So now what.

I've been consumed on this cancer road since October, dreading my next steps on the way to recovery. Pregnant needing a thyroidectomy. Finding a balance of drugs that wouldn't make me sick, 126 pills a week. Giving birth to my beautiful daughter. Soaking up every second of our short breastfeeding time together. Weaning her. Endless doctor visits and scans. Bills. More bills. Blood draws and cancer hospitals. A six-week preparation for radioiodine treatment. Thyroid hormone withdrawal. Hypothyroidism. Low iodine diet. Isolation.

My whole life has revolved around cancer for seven months.

I haven't been living.

My daughter is two months old and I feel like I haven't allowed myself to fully enjoy her because I've been holding myself back, knowing that I would soon have to leave her for treatment and not wanting her to need me while I'm away. I've prepared myself not to cry when my two year old asks if he can come to the "hobital" with me. When he calls up and asks, "Are you all better, Mama?"

I feel like now that I am alone in my hotel recovering from it all I should allow myself to cry for hours to get it all out of my system, but I don't feel sad. I feel lost. And I still have a lot of uncertainties in my near future. A body scan on Thursday to see if there is cancer left behind. Yearly scans. The difficult path to regulating my hormone levels and climbing out of my sluggish hypothyroid state. Gaining weight back. Finding color in my face.

I've never been one to hold back before now. I've never been afraid to get hurt in my relationships. But cancer is different. Cancer is a game changer.

I want to be back here, back in this video. It is summer of 2008 and I have no clue that my life is about to change drastically: marriage, two babies, giving up my career, battling cancer. All I care about here is singing and praying that the dogs don't start barking while I try to record the song on video. And they do.

How could I let cancer become my identity? Easily, I suppose. We all are consumed by our own mortality. I turn thirty this year and my love will be forty. His beard is starting to show signs of salt and pepper gray. Your loved ones battle cancer with you.

I get to see Dylan and Katie today for the first time in four days. I'm not even that excited to see them. My need to protect them from exposure to the slight leftover traces of my radiation is stronger than my need to hold them. And so I feel guilty as if I don't love them enough. But the truth is that I love them too much.

I will give anything--anything--to be with them for the next sixty years.

Hello, Insomnia

Kate's asleep. She woke up at 2 and after a quick bottle went right back to bed. I've been up for two hours reading about the 300+ signs of hypothyroidism. Yes, you read that right. I'm now wondering if that unexplainable year I spent with daily chronic hives was related to my thyroid or if I even had Lyme disease at all [although the bullseye rash, sudden paralyzation and pain in my limbs, and positive titer tests would point to classic Lyme]; wondering if my absolute inability to concentrate or chronic weight loss or extreme anxiety have all been thanks to my thyroid.

I'm so antsy that I want to get out of bed and pace the room for a few hours. I contemplated taking a 4AM walk but I barely have the strength to climb the stairs without my heart feeling like it is collapsing. I'm starving, as usual. My face is numb and therefore my calcium levels are low. My body is not working.

On top of all of this I now have ridiculous family drama to deal with. What a wonderful support system! I'm not sure if I just don't care about what's going on or if I care too much. Either way this is the last thing I need on my (already lacking) plate.

I want to wake Sean up and hold him. He's so sweet when he sleeps. I can see the stress of all of these cancer costs weighing on him and yet he never complains. He knows what it is like to lose someone to cancer and he won't stand for anything but the best treatment for me.

But my cancer is a 'good cancer to have' says the doctor. I'm not even worried about the cancer aspect of this (until we know for sure that we should be worried), I'm just suffering through the side effects. A friend of a friend who also had papillary thyroid cancer called me up when I was diagnosed and said something that will always stick with me: "I don't even consider myself a cancer survivor." This meaningful sentence, along with my surgeon telling me, "You're going to live a long and healthy life" are what get me through the scary cancer part of all of this. I'm not going to worry about that yet. I have to take this one day at a time.

For now I am finding therapy in writing it all down. These days preparing for treatment are creeping by as if time is standing still but I hope that I look back on these entries in three weeks as if they happened in the distant past.

It's midnight

We had so many parties and celebrations this weekend that I got absolutely nothing done around here. Luckily my Pops loves to pick up Dylan during the week to take him shopping and to run errands and the like so that this mama can get some work done. Tuesday is supposed to be 72 so we've already made park plans with Grandpa. Wednesday my BFF flies in from England for three whole weeks! [I cannot wait!!!]

And this weekend I start my special low iodine diet and have to go off my thyroid medicine until after my radioiodine treatment. This means that I'm going to have nothing to control my hormones, nothing that I enjoy eating, and I am soon going to be stuck in a room by myself where everything is wrapped in plastic and there are signs warning everyone to stay away from me, while my husband stays at home with our babies as tries to manage the house alone. My heart already misses them. But what I really should be worried about is whether or not my cancer has spread. We don't know the extent of where the cancer is yet. My surgeon was optimistic since I have negative margins (meaning he removed the entire tumor and there should just be a dusting of cancer cells left) but my endocrinologist made no promises that it hasn't spread and told me that my cancer was aggressive.

Because of all of this cancer talk lately I have been talking to Sean about what might happen if I died. I'm a little scared I might, honestly, and not just because I have cancer but because the medicines I'm on are making my heart feel terrible and this makes me feel like a long life may not be in my cards. Already my heart is not great, I am constantly going tachycardic and skipping beats enough that my doctors love giving me constant EKGs and monitors are always alarming when I am hooked up to them. Add to this my temporary thyroid medication which causes heart palpitations and I feel like I'm living on borrowed time. It's as if I've had too much coffee after running a mile several times a day. So I talk to Sean about it because I'd rather have plans for the future should I not be in it than have him trying to raise our kids blind. Sean always says, "Well you'll be planting me first, so..." when I talk like this and then we sort of awkwardly laugh and then pretend like the thought of losing one another doesn't absolutely tear a whole in our hearts.

Cancer schmancer, I say. I'm sure ill be fine, it just weighs so damn heavy on my mind. A friend of mine is battling bone cancer and actually feels it, can push on her pelvis and feel pain from her bone cancer. When I talk with her I feel like my cancer is as innocent as a paper cut and feel like a complete asshole for feeling the way I do, for thinking about how sad I will be to be away from my babies for a week while she goes through weeks and months of hard chemo. This is all too much for us to handle, we're thirty and too young to deal with this shit.

I sound like a huge depresso but lately I've been anything but sad. I am tired, yes, but very blessed. These two kids and my soulmate make me so, so happy. I am constantly feeling lucky for my life. I feel like the richest women on Earth. The four of us cuddled on the couch together today and the love that beamed from my soul was blinding as I held my children close and my husband held all three of us. Even the thought of that moment makes me ear-to-ear grin.

Kathleen is sleeping so I suppose I should get some rest, too. What's that saying about babies? Sleep when they sleep? :)

the cancer blues

You're supposed to be depressed after you have a baby, or so I hear, and I am finding myself in that boat these days although my postpartum blues have little to do with giving birth. This little newborn girl is amazing. I am beyond the skies in love with her and so grateful to be her mama. I crave her next to me and yet I am happy to leave her at home with Daddy while I take her big brother out on a mommy and me date. I feel emotionally stable times ten with her, mentally healthy, happy.

Emotionally I am fantastic, baby wise. Yet I have this nagging sorrow in knowing that I have to leave my babies in six weeks for my week-long radioiodine therapy. Isolation. In a room alone, sporadically frequented by nurses in hazmat suits. A whole week away from them. I've known about this treatment since the "c" word was first mentioned in October. I know I have no choice but to go through with the therapy.

I feel so much loss over this impending schedule. I can't breastfeed Kathleen for more than a few weeks. And I know--I know--that moms formula feed their infants all the time and even chose it over breastfeeding, even I was a formula baby. If I had a choice who knows if I would chose to formula feed her in a few weeks anyway or if my supply would suddenly diminish and I would opt to supplement my milk and in the end turn to formula. But I don't have a choice.

I haven't allowed myself to think past the treatment and enter into the what ifs of cancer: what if it spread, what if I die? We'll cross that bridge when we get there.

For now, for the next six weeks, I will cherish every second with my babies and maybe they will fill up their Mama banks and feel just a tad bit less longing for me when I'm away.

Soul medicine

One of the worst things about having cancer for me is watching Dylan's reaction to it all. Touching my neck scar and pretending to give me medicine to make my boo boo all better. It's heartbreaking and heartwarming all at once. Little does he know that he is my best medicine.

A double milestone day!

Today I am 35 weeks pregnant with Kathleen and I am officially 3 months post-op after my thyroidectomy! Two reasons to celebrate!

I saw my midwife this morning. She is fabulous: huggy, bubbly, and always so darn happy to see me. I could use more of her in my life. I weighed in at 125 lbs--22 lbs gained total--Katie's heartbeat sounds wonderful, and the baby measures exactly 35 weeks. Jenny, my midwife, gets so excited when she feels my stomach because she says you can really feel the baby. She can pinpoint where Kate is lying from her head to her back to her butt to her little feet. This makes bubbly Jenny "shocked and ecstatic", she says so during every visit. She also says I'm very deceiving because I look so tiny but the baby measures right on target. I could say I have no idea where the baby is hiding to make me look so small but I know Kathleen is right there in my ribcage. Ouch! The upside to this is since I can feel her so well I can also push her down a little bit to give me some relief. Katie hates when I push on her feet and kicks me hard. I like her stamina.

Oh my goodness, Jenny also said the craziest thing to me today. She said, "You just have to keep her in there one more week and I'll be happy." One week. Apparently by 36 weeks Katie should be born a healthy mostly full term baby. Here I am thinking I have five more weeks--35 days exactly--to prepare for this peanut and Jenny throws the keep her in until Friday line. I am not ready. If Katie is anything like her brother she will wait until at least a week after her due date, but I do feel a lot more BH contractions with her than I did with D so it's very possible she'll be here sooner. Not to mention the constant nesting and crying might be signaling an early delivery.



I also gossiped with Jenny--who is about my age--about how rough yesterday's doctor appointment went and she said she had heard others say that Dr. P. was kind of a jerk. We laughed about the fact that I'm reupholstering every piece of furniture in my house and she asked me what I had in mind for birth control after the baby was born.

My birth control? A toddler and a newborn. Plus I'll be radioactive a few weeks after I deliver. Nothing says Not tonight, darling like a hazmat suit and radioactivity gushing through my pores.

Sean, however was talking last night about how we're going to become the Duggars and have a bazillion children. I'm not even sure if I can have more kids even if I wanted them because I have to do radiation scans to check for cancer for the next five years. But right now I have no interest in a third baby, I'm more interested in sleeping through the night again in a few years.

So here is the difference in my scar from 6 days after surgery to today, three months post-op:

6 days post-op

3 months post-op

Definitely looks lighter these days and puffier, but it sure hurts a lot still. Like a paper cut or a burn that won't heal. I'm told I will start feeling better in about a year.

And for belly comparisons, here is me pregnant with Dylan at 35 weeks 5 days:




And with Kathleen at 35 days:



I don't see much of a difference between the two of them except that Katie is much higher and I can still wear my pre-pregnancy jeans with her, but only the ones that stretch, mind you.

The flu is in full force right now and I'm petrified to go out in public. Even the hospital where I will deliver has set up limitations on who is allowed to visit to keep the flu away from patients. I'm debating on whether or not we will have visitors at the hospital just because it is so risky this year and flu season hasn't even peaked. The stories of little kids dying from the flu and R.S.V. on the news terrifies me.

Also, don't watch the movie Contagion if you're already feeling jittery about germs.

Happy weekend, y'all!

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.

Thyroidectomy, before and after

Our 5AM drive down to Yale-New Haven hospital was dark and peaceful.  My nerves were ablaze with worry and to settle me as much as possible Sean kept quiet and turned on Jackson Browne.  I made statements of should I die, be sure to... and Sean held my hand and reassured me that I would be just fine.  But just in case, I said.

Half of me wanted to get this surgery over with as soon as possible and the other half wanted to drive in the other direction. But there is no denying cancer and so we pressed on until I found myself getting IVs placed in my hand and wearing a not-so-flattering XXL hospital gown.  After checking the baby's heartbeat--the nurses gathered around and ooh'd and aah'd at her strong 146 ba-bump ba-bump--it was time to go.  I kissed Sean goodbye twice in the hallway.  My young anesthesiologist placed a warm blanket over my shoulders and hugged me as we began the walk to the operating room.  He asked about Dylan and told me that he and his wife were trying to have a baby.  "You'll never sleep again," I told him, "but having a child is the best thing in the entire world."  He replied, "I don't sleep much now with this job anyway" and smiled as he pushed open the door to the operating room.

The room was bright and filled with people in masks.  One of the nurses, a sweet woman named Mimi, knows one of my aunt's friends and had been advised to take extra special care of me.  When I walked in the room she introduced herself and talked about the mutual friend and said, "We were friends, you and me, but now we're family!"  She held my hand in those last seconds as my wonderful surgeon Doctor Udlesman instructed me off to sleep with a promise to take great care of me and the little girl in my belly.  My mind wandered before I drifted asleep from the anesthesia and I thought about how the lighting in this operating room would be perfect for a photo shoot.

I woke up groggy in a small room with nurses floating in and out.  After a few minutes they asked me if I'd like to have them get my husband from the waiting room and as soon as he came into the room the nurse made a comment about how my blood pressure immediately dropped upon seeing him.  I remember being wheeled into an elevator and up to my hospital room next, and the excruciating pain which shot through my neck as the nurses rolled me from my temporary bed.  This is what it feels like to have your neck sliced open.  The nurses had given me Reglan in recovery for the nausea and were now offering Tylenol with codeine for the pain.  The rest of those first hours in my new hospital room are a bit foggy.

I was scheduled to go home Friday morning until it was determined through blood tests that I was becoming severely hypocalcemic.  My calcium levels were a low 7.5.  They gave me six calcium pills and checked my levels an hour later.  They were dropping to 7.3.  My room was a carousel of doctors and nurses coming in to check on me, flicking my face with their fingers to monitor the twitching resulting from my decreasing calcium.  One doctor came in and advised that they were going to put me on a calcium IV drip, my levels were dropping too fast and my body couldn't catch up even with extra calcium supplements and so I would have to receive a constant dose of calcium until my body could regain control.  I was placed on a heart monitor as well and told that there was no way I would be going home in the morning.

My heart broke.  Literally.  I went tachycardic.  The heart monitor continued to pulse from a safe 96 bpm one moment to a sudden 149 bpm in an instant.  More doctors.  More nurses.  I was given an EKG.  More calcium pills, some magnesium, potassium.  I felt my body failing.

By morning I was feeling a bit better.  My heart continued to stress and the monitors continued to rise and fall, sending out shrill alarms and sending in nurse after nurse.  The doctors came in and told me that I would be staying at least until Saturday night, maybe Sunday morning.  Part of me was relieved that I would be safe in the hospital and most of me was sad that I wasn't going to be able to see Dylan who had come down with the world's worst cold.  So we took full advantage of video chatting.

I could write for days about all of the experiences I had in the hospital, but mostly my stay involved lots of pills, lots of monitors and nurses, plenty of nausea and sickness, having to pee in a plastic "hat", getting blood drawn so often that even the nurses were shocked at how bruised I was, and watching terrible television programs.  The free room service was pretty great though, and our family pulled together to watch our poor sick Dylan for a few hours each day so that Sean could come sit with me.

My calcium levels slowly improved on the IV drip 7.3 to 8.0 to 8.5 to 8.8.  They stopped the drip for an hour to give me a magnesium IV, my levels went from 8.8 to 8.0.  Apparently my body still wasn't able to regulate calcium.  I was having pretty frequent braxton hicks contractions so an OB was called in to give me a vaginal ultrasound.  This involved me laying spread eagle naked in my hospital bed propped up on a bed pan.  Pregnancy really knows no shame.  Katie seemed fine and I was not at risk for preterm labor.

On Sunday morning, after three horrid vomit-filled nights in the hospital, the doctors felt confident that my 9.5 calcium was stable enough to cut the IV dose in half to see how I managed.  Hours later I was down to 9.1.  They stopped the drip.  I was told I needed to maintain an 8.8 or higher before I could be discharged.  Sean was hopeful, I was not.  But at 3PM on Sunday my levels were exactly 8.8 and I was allowed to go home.

I haven't felt much throat pain, although I do have minor muscle discomfort.  Yawning still stinks and I can't stand up for very long.  I photographed my neck today when I gained an inch of energy.  Here it is six days post op.






I started my synthroid hormones yesterday and am feeling less anxious than I have in years. My fabulous surgeon called this morning and gave me my pathology results. The tumor was 3cm--as expected--and the cancer had spread into the surrounding muscles and into 3 or 4 lymph nodes, all of which were removed. So the doctor says everything is looking good and aside from my radioiodine therapy after Katie is born, I should have this cancer thing behind me. And I'm going to live a long and healthy life. The doctor had one request, that I send him a picture of the baby when she is born. I really could not have had a better surgical team.

And now to continue on with my life.