Showing posts with label Thyca. Show all posts
Showing posts with label Thyca. Show all posts
Saturday, January 31, 2015
No news means I'm feeling well
I've felt great for two days. Still needing to nap once or twice a day but having enough energy to get up and move around.
Wednesday, January 28, 2015
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.
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.
Wednesday, January 15, 2014
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.
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.
Friday, September 13, 2013
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!
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!
Monday, June 3, 2013
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.
Wednesday, May 29, 2013
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.
Tuesday, May 7, 2013
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.
Sunday, May 5, 2013
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.
Saturday, April 20, 2013
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.
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.
Saturday, April 13, 2013
Countdown to RAI
I start my low iodine diet tomorrow so today I am rummaging through ThyCa's 123-paged LID cookbook. Tonight we will take a trip to Whole Foods or Trader Joes and buy a ton of iodine-free ingredients. I think I will miss milk and Reece's peanut butter cups most.
I'm still feeling bummed about having to go on this diet and then having to go into isolation in a few weeks, but I'm optimistic (so far) that I can do this.
Here are my guidelines and restrictions for when I come home from the hospital. I will have to stay someplace else--with family or at a hotel--until the whole week is over because I can't be around the kids without holding them and I don't want to endanger them in any way:
Tomorrow I stop taking all thyroid hormones which will put me through withdrawal and cause me to feel hypothyroid. It will be nice not to have to keep an empty stomach twice a day like I do now in order to take my pills, but I'm going to feel exhausted and probably emotional.
I need to start thinking on the bright side of things. I can totally do this.
I'm still feeling bummed about having to go on this diet and then having to go into isolation in a few weeks, but I'm optimistic (so far) that I can do this.
Here are my guidelines and restrictions for when I come home from the hospital. I will have to stay someplace else--with family or at a hotel--until the whole week is over because I can't be around the kids without holding them and I don't want to endanger them in any way:
- Minimize contact (less than 3 feet or 0.6 meter for more than 1 hour each day) with everyone for the first five days, and with small children or pregnant women for eight days.
- Do not sit next to someone in an automobile for more than one hour. Sleep in a separate room and use separate bath linen and launder these and underclothing separately for one week.
- Wash your hands with soap and plenty of water every time you use the toilet.
- Rinse the sink and tub thoroughly after using them.
- Use separate eating utensils or disposable eating utensils. Wash eating utensils separately for one week.
- Do not prepare food for others.
- Flush toilet 2-3 times after use for two weeks after discharge.
- Males should sit when urinating to avoid splashing for one week.
- Discuss with your doctor how long you should wait before starting a pregnancy after your treatment (usually at least two months for males and six months for females). If you are breastfeeding, it should be discontinued, but can be resumed for subsequent childbirths.
Tomorrow I stop taking all thyroid hormones which will put me through withdrawal and cause me to feel hypothyroid. It will be nice not to have to keep an empty stomach twice a day like I do now in order to take my pills, but I'm going to feel exhausted and probably emotional.
I need to start thinking on the bright side of things. I can totally do this.
Sunday, April 7, 2013
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? :)
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? :)
Wednesday, March 13, 2013
My hero, my surgeon
I mailed out Katie's birth announcement to my midwife and my surgeon this morning. We only had a few stamps so I chose to send two to the people who are responsible for bringing her into this world first. I discovered this video of Dr. Udelsman when I was searching for his address online and I've watched it a bunch. Even in this short little clip he makes me smile. He is the surgeon who performed my thyroidectomy in October and he was an absolute doll. A pro in his field and a joy of a human being. After I hugged him goodbye for the last time--after he had said, "You're going to live a long and healthy life" to me--he made one request: that I send him a birth announcement when little Kathleen was born. I've had a lot of not-so-great doctors over the years, but Dr. Udelsman was one of my favorites and I'm pretty sure he saved my life that day when he removed my tumor.
Wednesday, January 23, 2013
Under 100!
I had to make a list of the medications I take to bring with me when I go into labor and am happy to report that I now take 14 medicines and supplements a day, just 98 pills per week, down from about 120! And my blood work came back pretty good yesterday: my PTH (parathyroid) is low but that's expected to improve as I heal, and my calcium is at 8.5--which is a bit low but still good! I'm gonna rock your boat, cancer.
Wednesday, October 24, 2012
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.
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.
Thursday, October 4, 2012
Standing on my knees
3AM makes me jump out of bed, my stomach in an awkward twist which sends me immediately to my spot on the bath mat in front of the toilet. I will myself not to be sick for a minute as I kneel, clutching a bottle of water in one hand and a bottle of Zofran in the other. If I could just get something in my stomach, I would feel better. But before I succeed I am retching fiery bile.
This is how I am feeling before the treatment side effects even begin, I am sure desperation will set in once the chemo starts.
Yesterday was not as bad as I imagined. I felt sad, yes, but there were long periods where I didn't even think of cancer. Life took over and I found myself pleading with a naked toddler to get off the big boy potty after practically camping out in the bathroom with him. We went shopping and picked out balloons for his birthday party this weekend, paid way too much for a mini helium tank with which to inflate them, ate breadsticks at the local Pizza Hut Express, drank decaf coffee and apple juice, respectively, at Starbucks. Yesterday was my first full day living with cancer and I found myself living.
I found myself worrying, too, mostly that the cancer is not just isolated to my thyroid. I can almost feel it throughout my body, at least I imagine I can. Instead of thinking positive, I'm white-knuckled and waiting for the bigger blow. This cancer has one of the best survival rates, most of the time in the 90th percentile, and yet I still have this fear nagging at me that I won't make it through.
I watched my dear friend Paul slowly die of brain cancer a few years ago. He had something called a glioblastoma--brain tumor, basically--with a ten year survival rate of 1.7% yet his outlook was more optimistic. He would joke to me that he has a dusting of cancer cells all over his brain and we should invent a brain Swiffer. Yesterday would've been Paul's 66th birthday. Today is the eight-year anniversary of his diagnosis. I can't help but feel him with me.
I felt my grandmother yesterday, too, she showed up in the form of a dead leaf on my windshield. On the night of her funeral, as I drove the hour commute back north to my tiny college apartment, a dead leaf found itself attached to my car antenna. There was no reason for it to hold on through those highway speeds, this fragile leaf that would surely crumble in my hands had I touched it, and yet there it was blowing in the breeze as I tearfully navigated my way home. I stopped at traffic lights and stop signs and that leaf never once wavered. As I pulled into my driveway and put the car in park that leaf slowly floated from its spot on my antenna and danced to the ground. Call me silly but as I mentioned I look for signs and that was hers. I showed Dylan the beautiful orange and red leaf that attached itself to our windshield on yesterday's drive to the store and after I pointed it out to him the leaf flew over the roof and landed in the road behind us.
My third angel is my aunt Sandy. I was pregnant with Dylan when she died and although we were kindred spirits, I didn't cry once over losing her. I felt as if she wasn't letting me mourn her because she knew I had to protect the baby she was so looking forward to loving. I feel that same calm now--although there have been moments of absolute heartbreak and aching--as if she is holding me in her arms once again. Maybe she is protecting this baby inside of me. I like to think so.
Today we will possibly find out the gender of this little baby. I am hoping that in knowing more about this tiny person I will feel more connected and more bonded to him or her. I've felt a terrible inkling that something wasn't right with this pregnancy from the moment I saw two lines. My instincts told me that something was wrong with the baby and so I distanced myself and focused more on Dylan and less on his sibling. My mothering instincts for this baby haven't kicked in yet--although they may today when I can see the baby and know that everything is going smoothly--I don't even have a guess on the baby's gender and yet I knew instantly with Dylan's pregnancy that I was having a baby boy. I was wrong with my gut feeling this time though, there isn't something wrong with the baby there is something wrong with me.
I'm not going to dwell on cancer anymore for a while. I've got Jackson Browne's Cocaine playing and these lyrics make me feel wild. There's a sexy side of a man singing about being wired on cocaine. And after an hour and a half of being awake, of getting sick and taking a bath and eating breakfast and writing, I feel better. I may not be sleeping through the night with cancer as my alarm clock, but I sure feel like I've figuratively bawled out my negativity in these early morning hours and I am able to start my day fresh and feeling positive once I hear the patter of the dogs' feet and my groggy boys join me on the couch to watch Sportscenter and later Mickey Mouse.
This is healing.
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