Last week I finally heard back from my new neurologist. I had already seen the hematologist about the blood clotting issues, but had been waiting on the referral to the new neurologist. I got the call, and nurse told me "right now, we are looking at 9:30am... on May 29th..."
My heart sank.
I knew that there are tons of people out there that have issues, but I also wanted to make a plan so I could get my life back on track. I told her that would be fine, but asked if I could be on a cancellation list. She told me that was fine, and I will hopefully hear something a lot sooner than May.
On Monday morning, I was home with Alex. I had cancelled my physical therapy appointment because he wasn't feeling good, and we were about to take a rest. I got a phone call from the nurse, asking me if I could make it to the neurologist on THAT DAY at 1:30, since she'd had some cancellations.
YES!!!
I told her I'd make it work, and would have to bring a kid with me. I was SOOOO excited, even if that didn't leave me time for a shower. I never like to go in public "undone," let alone meet a new doctor that I have to convince I am not crazy. I did my hair and slapped on some makeup, and we headed out the door.
I was having trouble over the past week, where even when I went to sleep at night I could watch my body spasm and twitch about. Sleep had gotten interesting, and I really just wanted some relief. While I surely didn't think I had a ticking time bomb sort of issue, I was about to lose my mind!
I arrived at the doctor, and filled out fifty seven pages of medical history. I pretty much told them everything that every happened in my life, which has been a challenge to write since my handwriting has gotten funky. I remember thinking to myself "I need to type all of this so I can just hand them a copy, and make multiple copies of that." I also remember thinking I would look really cool handing a booklet to my doctor. Hypochondriac anyone?
But once you've had cancer, they kinda expect you to give tons of info. And if you don't, they ask you TONS of questions anyway. So, I am thinking the booklet might be a good plan.
The nurse was incredibly friendly, and told me Alex was fine to sit with me. I could tell he was nervous, because he opened his water to drink it and spilled it all over the floor. Without missing a beat, she handed him a few paper towels, and told him it was only water. I appreciated that she did her best to make him feel at ease.
I was a bit nervous, meeting a new doctor and all. I was also nervous to talk to the doctor in front of Alex, because I don't want him worrying about me. The good thing about Alex, is he has the ability to hyperfocus. It can be really bad when you are trying to get his attention, but it was fantastic when I was conversing with the doctor. She even giggled when he made motor noises while playing his game, because he was completely oblivious to her in the room and our serious conversation.
The doctor: when she walked in, I was a little nervous. She looked nice, but she also looked extremely professional. I had thought back to all of my doctors I've seen, and I have had some doozies. Unfortunately, that makes me a bit skiddish when meeting new docs. I just didn't want her to think I was crazy, because I was tired of my issues being belittled. The truth I have learned is that if I am a male with the exact same issues, I would be taken seriously. Because I am female, sometimes they play the "hysteria" card, and blame it on hormones or mental illness. It's a sad world in health care when doctors play this game. They threw that crap on me the week before I found out I had cancer. One minute I am just crazy; the next minute they are telling me I have cancer, and apologizing. Nice...
So, I answered her questions, but I didn't want to divulge too much info yet. I didn't want to run her off. She seemed nice enough, and she was really thorough. She started with the hospital event in December, and went over that info with me. She made a plan for the stroke care, since she said it was probably a Transient Ischemic Attack. It sounds like the same thing that happened in 2009, and she was glad the hematologist was looking into the cause. With infertility issues that may have stemmed from this clotting problem, and the TIAs, she decided that I needed to remain on long-term aspirin therapy, and look at minimizing other stroke risk factors. Fair enough. We talked about those, and got a plan squared away.
I was already beginning to love her, because she was actively making a plan. I had concerns, and she was validating them and making a plan! No finger-pointing or whining! Just matter-of-factly telling me what we had to do, then asking me if I thought that was a reasonable plan. Then she moved on to the other issue...
I was really nervous to talk to her about the tremors, I guess because I get emotional about them. I really didn't want to cry in front of the doctor, but it happens when I have to tell her how embarrassing this has become, and how it has affected my personal and work life. I could already feel the tears well up as she started asking me one hundred questions. When I started telling her how I shake when I write, when I type, when I put on makeup, that's when I started to cry. I realized that everything I do to get ready, to be productive, to be a human being, is now affected. I told her how even when I sit and watch tv at night, I feel the twitching and spasms, and see parts flop about.
She told me it sounded like I had rest tremors and tremors with activity. I agreed, and told her that has been what confused me. I seem to overlap with the Essential Tremor and Parkinson's Disease diagnoses, and that confused me. I explained all of the family members that had both ET and PD, and told her that essentially there was a "whole lotta shakin' goin' on." She really appreciated that comment, and her giggle lightened the mood quite a bit.
She asked me "why on earth has no one tried medicines for the tremors?" I told her how people observed them, but either shrugged them off as anxiety or told me I was crazy. I know I've had stress in the past, but this has gone on for too long, and it's gotten a lot worse! She told me that wasn't a very smart plan, and she wants to start me on meds right away. The only way to know if they will work is to try them, but she wants to start me on the most conservative (and cheapest!) drug first. She wants there to be benefit, but not at the expense of side effects, or building up a tolerance to meds early in the treatment phase. She told me that meds should help me function easier, and that I can work on exercises to build up my strength and balance, until those start giving me more trouble. Essentially, she let me know that all of this will progress, but a proactive approach will help me function independently for longer. I liked the sound of that.
She also wanted ALL of my records from all the other doctors, because she wanted to sort through everything and see what they were searching for. With the swallowing issues that required esophageal stretching at the Mayo Clinic, she wants to make sure that wasn't related to the swallowing problems of PD. The balance issues that have caused broken bones and injury sound like they've been linked to it as well. I had to wonder what would have happened if I had met her five years ago instead of the other twenty doctors. I guess we can't go back, and it's really worthless to think about all of that. I'm just glad I've found her now.
So, I started on propanolol, and I went ahead and started a more aggressive dose. This is used to lessen the tremors, and decrease the anxious reaction they are causing. It's actually a beta blocker used for people with heart issues. She said it was a good first choice because it didn't have a lot of side effects, and it was cheap. I just have to be careful of standing up too quickly- sometimes the blood pressure can take a dive, and people pass out. I think I can remember that if it means making a difference in my daily routine! She said I could feel results fairly quickly, but to give it a week or two to really gauge its effectiveness. She asked me if it was reasonable to meet back in two months to see how the treatment is working, and for me to promise I will get an opthalmology evaluation and talk to my sleep dr again. PD has sleep problems associated with it, and she wants to make sure we are all on the same page. I hadn't been to the eye dr in a while, but have had some vision issues associated with both the TIA and my daily life. My left vision has been blurry off and on, and she said that very well could be creating that nausea feeling, and the headaches I sometimes get. She wants to make sure everything is intact from that perspective, and I am grateful that she's on the ball.
So, after getting back into Tullahoma, I stopped by and picked up my new meds. I was a bit leery that a drug costing $4.25 a month could be the answer to my worries, but I gave it a shot. I took a pill and went about my evening routine. I really didn't expect much of anything to happen.
I did feel a bit more relaxed about life. Honestly, I didn't give a flip what happened that evening, which was kinda nice. I didn't feel drugged or anything, but it seemed like things moved slower. It wasn't half bad. I couldn't tell if the tremors were less, or if I just didn't care... LOL
I headed to bed at a reasonable hour, and woke up at almost 7am!! WHAT??? I had slept almost 10 hours and didn't wake up! That NEVER happens. Ok, I did remember waking up briefly one time in the night, because I was having really odd dreams. On Tuesday morning, I did a little research and found out that was one of the commonly reported side effects (vivid and sometimes strange dreams).
Day 2 was pretty decent, but I found myself sleeping quite a bit during the day. That was a little strange since I had slept so long the night before, but I was wondering if I was finally catching up on sleep. Tuesday night, I was asleep by 9pm. What time did I wake up Wednesday? 7AM!!! ANOTHER 10 HOUR NIGHT!!!
Of course, I woke up once or twice from strange dreams again- nothing scary, just very realistic and odd. I can't remember them now, but they were worth waking up for. Today I had to go meet someone for lunch, and I was a bit nervous. This was the first social opportunity since starting the medicine, and it gave me an opportunity to see the meds in action. I've been getting anxious because I don't want to look odd in public, which I am sure makes everything worse. Well, the thing that makes it worse is when people point it out (which happens EVERY DAY). I really didn't want to look out of place, and I practiced my hand-holding I do to make it look like I am thoughtful instead of shaky...
I took half a dose earlier in the day, and the other half an hour before lunch. I wondered if the dose was what made me sleepy the day before, and I didn't want to risk that with the driving to Murfreesboro. So, I figured the split would lessen the blow of the meds.
I am happy to report that lunch went well! Either I didn't care about the shaking, or it really did help! Or, my lunch mate was just too polite to ask... LOL It was nice to be out and be social, even if it did mean I had to sit and worry about this issue for two hours. At least I was getting out there and living life! And because I am like Garfield and love me some lasagna, that's what really pushed me to go... ;-)
We'll see what happens over the next few weeks. I meet with the hematologist next week to come up with a plan for my blood, and I go back to see my orthopedic surgeon to address my healing of my knee. I am supposed to start back to work the week after that, if I am about to get a handle on my health. I want to balance a medication that makes me safe and productive, with the ability to be productive at work and do what needs to be done. The reality is that teaching special education requires 150% alertness and physical function, and that's what is making me apprehensive right now. When I take a med to increase my physical ability, I am sacrificing alertness. At some point, I need to make a decision about what's best for me and my career. Unfortunately, I've always been the provider and never got to worry first about my health and comfort. Right now, as a single parent and provider, I am trying to be thoughtful in balancing my well-being with the well-being of my children. Pray for me on that aspect.
What I'm really hoping for is some time to make a plan. The whole reason I created this blog was as an extension of my project I did for turning 30. I still had goals that I wanted to complete by 40, and I guess I've been lax in making a plan about getting anything done. Maybe the best part about facing my new reality is knowing if I want to reach those goals, I need to plan on sooner rather than later. That's probably true for all of us, so I guess it's a good thing to realize now. :-)
Showing posts with label sleep. Show all posts
Showing posts with label sleep. Show all posts
Wednesday, February 5, 2014
Wednesday, April 17, 2013
My Outlook
Well, it has been the better part of a week before I posted. I have actually attempted to make this post two different times, but never completed it.
On Friday, I visited the doctor and learned that he removed the one cancerous tumor. He said my chances of survival were pretty good, and I will be getting radioactive iodine treatment. He was pretty casual about it, but I made it to the hospital before the nurse called me. My calcium levels were still low, so I was getting my blood drawn AGAIN. I hated that the people at the hospital now knew me by name...
I was told that the endocrinologist wanted to see me Monday morning. They wanted me in QUICKLY. I agreed (because I didn't have a choice), got my blood drawn and headed back to work. I started feeling progressively worse as the day went on, and at about 2pm the nurse called to tell me that my calcium levels were as low as when I had problems in the hospital. I could tell something was up, because my muscles were twitching, I had terrible cramps in my legs, and my face was shuddering. They adjusted my supplementation again, and I went home to rest.
I will say I barely made it home. I felt absolutely miserable. I don't remember much of the night, other than talking to a friend for a long time. He did a good job of distracting me from my discomfort. I called the doctor, and he told me to take more meds. I went to bed finally, hoping everything would sort itself out.
The weekend was easy-going. On Saturday, we had a tea party for Carly's guest (a friend from school). By Sunday, I didn't leave bed except to make a cake in the morning. I was absolutely drained, and there was barely enough energy to eat. If I could have operated from bed, I would have been happier. I was a bit worried about how the week would go if I felt this bad on the weekend!
Monday came around, and I had to move the appt because of a work meeting. I arrived in the afternoon, to find that there was definitely cause to remove the thyroid. There were multiple nodules that looked strange, and the cancerous mass. I knew I did the right thing, but it helped to have more people back me up. They told me my schedule for the radioactive iodine, and went over how the withdrawal of thyroid hormones would work.
I told the doctor that I had gone through hypothyroidism before, and I knew what it was like. She laughed... HARD. She told me she saw and heard about my symptoms, but that my levels were never significantly below the appropriate level. In short: she told me this was going to be BAD. She said I had a great outlook, but to prepare myself for the worst. I was going to have ZERO energy, muscle pain, hair issues, my voice might get weird, and I will be moody. Very, very moody.
I took notes, and headed home. Well, actually I headed BACK to the hospital to give them MORE blood, then headed home. As I walked into the hospital, I saw on the news that there had just been a bombing at the Boston Marathon. I remember looking at the news, and wondering if this was a sign of some sort. It seems like there's always something, and it saddens me to think that there's so many people that don't value how precious life is.
I got home and intended to write about the experiences. I had been trying to write for the past few days. I guess my body finally became less vigilant, and was finally able to rest. I also tried desperately at work to get a lot done, because I knew once the medication withdrawal started, it was going to be a rough road. It would be better to get everything done, then I could sit back and enjoy the end of the year.
I'd like to say it's been easy the past few days, since I am recovering nicely. In reality, I barely get home from work, and am in miserable pain. I make it home wincing in pain to get through the doors of the house, and it's a battle to get everything done for the evening. I am just praying for Friday to get here QUICKLY.
Last night, before I fell asleep, I was thinking about the future. I thought about plans to get me through the summer, plans of what would ideally happen in the next year, and even where I wanted to be in the next ten years (the purpose of this blog). I also realize that I am a fantastic planner, and wanted to have plans around for things "just in case." I guess the fact that I can even write about all of this without crying tells me I have a certain level of detachment that is necessary to cope with all of this mess. I am definitely not saying things will go bad--I just realize that the POSSIBILITY is out there.
I also thought about my friend Scarlett, and how she told me this is one more thing I will conquer. I thought about all of the stuff I've been through- attack, TBI and long recovery (wheelchair to walking and running), abusive relationship and getting OUT, raising two kids on my own while working and trying to normalize their life, even surviving an attack in college. Suffice it to say, if I come to it, I will go through it. I guess cancer would inevitably make its way onto that list. Gee, when I look at the list, I can see why I intimidate men. ;-)
I'm not as verbose today as I was last week (can you imagine? this is short for me!). Tonight, I have a lot of thoughts swirling in my head. I know that I need to sort through these before I can write, but I also wanted to let you know where things stand.
I have yet to tell my friend Jere about this situation. I am usually quick to tell him about everything. I just don't want him to worry, because he is an oncologist. He has dealt with great success stories, and he's had terrible stories to tell. I have always wanted to be one of the good stories he tells. :-)
Alex lost his first tooth last night. I was so excited, because he has been looking forward to this milestone for weeks now. I felt a twinge of anxiety, because I saw how important it was to see this milestone. I had already been fully aware of these special moments, because I wondered how some people would choose to miss them! I realized that now he's losing a tooth, and won't be my baby boy for much longer. He'll be graduating kindergarten, sailing through grade school, and will be graduating in 2025. It won't be long before he has his career and family. And I hoped and prayed to God, in the ten seconds it took me to think of all of this, that I would be there to get the call from my grandchild, telling me he lost his first tooth! It's moments like these when I realize that a lot of great can come of my life. I also realize it is terrible precious and fragile, and I need to enjoy it while I can.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well. -Psalm 139:14
This has been a Psalm that's been on my mind quite a bit lately. I am mystified at my life, and I know my friend Robin talks about how I can make hugging a trucker in a parking lot sound magical. I am so grateful I have that ability, and can see the amazing in the ordinary. It makes me appreciate really how much awe and amazing is created in every moment, and I am grateful for all of these experiences that have added so much to my life. Our trips around the sun are really too few, no matter how many years we get. They key to all of this is finding a rich life, and appreciating that we are fearfully and wonderfully made, no matter what our religious path. No matter what news we receive, or day we have at work. No matter what ideas are floating or pounding or swirling around in our heads. We all need these moments to center us; these moments where we lie on the driveway and stare in awe at the dark universe.
And for me, I was always the one to watch in awe. I will say there's an added glisten to all of these ordinary moments. I feel like I am seeing things differently, and really seeing how fantastic our world can be. Maybe that's the best gift I could receive right now, when terrible things happen and so many people are fearful. I know my place in this world, and my purpose as well. It is to inspire change, and to show love. If I can say I've done these two things every day, then I've served my purpose. This is really quite a feeling of contentment, and one that will ensure restful sleep tonight.
On Friday, I visited the doctor and learned that he removed the one cancerous tumor. He said my chances of survival were pretty good, and I will be getting radioactive iodine treatment. He was pretty casual about it, but I made it to the hospital before the nurse called me. My calcium levels were still low, so I was getting my blood drawn AGAIN. I hated that the people at the hospital now knew me by name...
I was told that the endocrinologist wanted to see me Monday morning. They wanted me in QUICKLY. I agreed (because I didn't have a choice), got my blood drawn and headed back to work. I started feeling progressively worse as the day went on, and at about 2pm the nurse called to tell me that my calcium levels were as low as when I had problems in the hospital. I could tell something was up, because my muscles were twitching, I had terrible cramps in my legs, and my face was shuddering. They adjusted my supplementation again, and I went home to rest.
I will say I barely made it home. I felt absolutely miserable. I don't remember much of the night, other than talking to a friend for a long time. He did a good job of distracting me from my discomfort. I called the doctor, and he told me to take more meds. I went to bed finally, hoping everything would sort itself out.
The weekend was easy-going. On Saturday, we had a tea party for Carly's guest (a friend from school). By Sunday, I didn't leave bed except to make a cake in the morning. I was absolutely drained, and there was barely enough energy to eat. If I could have operated from bed, I would have been happier. I was a bit worried about how the week would go if I felt this bad on the weekend!
Monday came around, and I had to move the appt because of a work meeting. I arrived in the afternoon, to find that there was definitely cause to remove the thyroid. There were multiple nodules that looked strange, and the cancerous mass. I knew I did the right thing, but it helped to have more people back me up. They told me my schedule for the radioactive iodine, and went over how the withdrawal of thyroid hormones would work.
I told the doctor that I had gone through hypothyroidism before, and I knew what it was like. She laughed... HARD. She told me she saw and heard about my symptoms, but that my levels were never significantly below the appropriate level. In short: she told me this was going to be BAD. She said I had a great outlook, but to prepare myself for the worst. I was going to have ZERO energy, muscle pain, hair issues, my voice might get weird, and I will be moody. Very, very moody.
I took notes, and headed home. Well, actually I headed BACK to the hospital to give them MORE blood, then headed home. As I walked into the hospital, I saw on the news that there had just been a bombing at the Boston Marathon. I remember looking at the news, and wondering if this was a sign of some sort. It seems like there's always something, and it saddens me to think that there's so many people that don't value how precious life is.
I got home and intended to write about the experiences. I had been trying to write for the past few days. I guess my body finally became less vigilant, and was finally able to rest. I also tried desperately at work to get a lot done, because I knew once the medication withdrawal started, it was going to be a rough road. It would be better to get everything done, then I could sit back and enjoy the end of the year.
I'd like to say it's been easy the past few days, since I am recovering nicely. In reality, I barely get home from work, and am in miserable pain. I make it home wincing in pain to get through the doors of the house, and it's a battle to get everything done for the evening. I am just praying for Friday to get here QUICKLY.
Last night, before I fell asleep, I was thinking about the future. I thought about plans to get me through the summer, plans of what would ideally happen in the next year, and even where I wanted to be in the next ten years (the purpose of this blog). I also realize that I am a fantastic planner, and wanted to have plans around for things "just in case." I guess the fact that I can even write about all of this without crying tells me I have a certain level of detachment that is necessary to cope with all of this mess. I am definitely not saying things will go bad--I just realize that the POSSIBILITY is out there.
I also thought about my friend Scarlett, and how she told me this is one more thing I will conquer. I thought about all of the stuff I've been through- attack, TBI and long recovery (wheelchair to walking and running), abusive relationship and getting OUT, raising two kids on my own while working and trying to normalize their life, even surviving an attack in college. Suffice it to say, if I come to it, I will go through it. I guess cancer would inevitably make its way onto that list. Gee, when I look at the list, I can see why I intimidate men. ;-)
I'm not as verbose today as I was last week (can you imagine? this is short for me!). Tonight, I have a lot of thoughts swirling in my head. I know that I need to sort through these before I can write, but I also wanted to let you know where things stand.
I have yet to tell my friend Jere about this situation. I am usually quick to tell him about everything. I just don't want him to worry, because he is an oncologist. He has dealt with great success stories, and he's had terrible stories to tell. I have always wanted to be one of the good stories he tells. :-)
Alex lost his first tooth last night. I was so excited, because he has been looking forward to this milestone for weeks now. I felt a twinge of anxiety, because I saw how important it was to see this milestone. I had already been fully aware of these special moments, because I wondered how some people would choose to miss them! I realized that now he's losing a tooth, and won't be my baby boy for much longer. He'll be graduating kindergarten, sailing through grade school, and will be graduating in 2025. It won't be long before he has his career and family. And I hoped and prayed to God, in the ten seconds it took me to think of all of this, that I would be there to get the call from my grandchild, telling me he lost his first tooth! It's moments like these when I realize that a lot of great can come of my life. I also realize it is terrible precious and fragile, and I need to enjoy it while I can.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well. -Psalm 139:14
This has been a Psalm that's been on my mind quite a bit lately. I am mystified at my life, and I know my friend Robin talks about how I can make hugging a trucker in a parking lot sound magical. I am so grateful I have that ability, and can see the amazing in the ordinary. It makes me appreciate really how much awe and amazing is created in every moment, and I am grateful for all of these experiences that have added so much to my life. Our trips around the sun are really too few, no matter how many years we get. They key to all of this is finding a rich life, and appreciating that we are fearfully and wonderfully made, no matter what our religious path. No matter what news we receive, or day we have at work. No matter what ideas are floating or pounding or swirling around in our heads. We all need these moments to center us; these moments where we lie on the driveway and stare in awe at the dark universe.
And for me, I was always the one to watch in awe. I will say there's an added glisten to all of these ordinary moments. I feel like I am seeing things differently, and really seeing how fantastic our world can be. Maybe that's the best gift I could receive right now, when terrible things happen and so many people are fearful. I know my place in this world, and my purpose as well. It is to inspire change, and to show love. If I can say I've done these two things every day, then I've served my purpose. This is really quite a feeling of contentment, and one that will ensure restful sleep tonight.
Monday, April 8, 2013
I Finally Write...
It's seems like I've been in a fog the past few days. Honestly, I just turned on my computer and went back to work today... The past week seems like it happened in slow-motion, then rewind, then slowwww again. Here's the best I can remember:
On Thursday morning, I woke up and seemed ready to get this surgery over with! We dropped the kids off to school, and I drove us to the hospital to check in. I didn't have to be to the hospital until 10am, which meant surgery wasn't starting until later. We seemed pretty relaxed the entire time, and I was just ready to put all of this behind me. I knew I would have a few days of discomfort, then I would be back to my old crazy self--encountering new adventures and telling stories to my friends.
I remember coming out of surgery feeling a little strange. I wasn't sure how long I'd been in there, and I vaguely remember falling asleep. Usually, it's a pretty relaxed experience (and it's sad it's happened so many times for me!). The strange thing about this time is they strapped an oxygen mask to my face, and I remember having a panicky feeling, thinking "something is NOT right!" Then I was out... So, coming out of surgery, I expected to feel miserable. Quite the contrary--I felt very chatty, and seemed to tell the nurse my entire life story. She was incredibly empathetic, and listened to all my jabbering. Actually, I seemed coherent, and it was the last case before she could go home, so she might have actually enjoyed herself. I was given a little extra pain medicine, she wished me well, and deposited me at my room for the night.
I was supposed to stay overnight to make sure my body could regulate calcium. Sometimes the parathyroid glands get damaged during surgery, and the calcium levels go haywire. This can cause all sorts of problems with muscles and the heart, and they watch to make sure nothing happens.
Well, the next morning it seemed like I was only going on a few hours of sleep. I figured the doctor would come by to discharge me, and then I could go home and sleep for the next few days. Then I would be back to work, and life would be back to NORMAL. The food services lady brought my breakfast tray, and I began eating. Shortly after eating my pancake, the doctor walked in.
He was a normally-chipper man, and he looked like he was making a real effort to be happy. I figured he was mad he had to come to the hospital (I was his only hospital case that day), or something else was happening. He asked me about symptoms, and checked my incision. It was when I asked about what he saw... I don't think for as long as I live I will forget the look on his face.
He backed up a few steps, and immediately started to fidget with my hospital blanket. I remember feeling an almost out-of-body experience as I watched him and wondered how many times he had to tell people bad things. I was trying to absorb what he was saying, and also think about what on earth he was saying, and why he was being fidgety all at the same time. I have to wonder what my face looked like at that moment. It must not have looked good, because for a moment he looked like he might cry.
He quickly told me I had two children already, so I'd probably want to opt for the radioactive iodine. That made me snap out of it. What was he talking about? I guess I hadn't fully digested the fact that the thyroid was out, let alone that I had cancer, or that I would be arranging treatment. I had to be honest, I really didn't know much about cancer, outside of the bits I read when people become diagnosed. I know things are so specific to different types, and it's not like I troll around morbid sites looking for cancer research. So, honestly, I had no idea what he was talking about. I could tell he understood that facial expression, because he paused, and said we could talk about all this once the pathology lab came back from the other half of the thyroid (I was diagnosed based on a 4cm papillary mass visually found on the left side- results are still out on the rest).
He then walked up to me and started tapping my face. My eyes started shuttering violently, and I realized I wasn't feeling well. He got quite an alarmed look on his face, while telling me that my calcium levels were dipping. This was causing the leg pains and restlessness (that I thought was anesthesia wearing off), and the scary actions of my muscles. He asked me if my face was numb- a bit, but I couldn't tell if that was my regular Topamax.
The staff jumped to action, starting me on calcium supplements via IV and orally. I didn't have much of an appetite, but I was trying to consume anything that had calcium. I was also taking Calciotrol, which is supposed to aid in the absorption of calcium. We were doing everything we could from keeping the numbers down. I desperately wanted out of the hospital- I hadn't seen the kids in a while, I had received a diagnosis of cancer, and I was now feeling anxious and miserable. From Friday to Saturday, those were NOT good hours in my life.
On Saturday, the push was to get the calcium stable so I could get out of the hospital. Thankfully, at the 3pm draw, I was stable, and we were able to leave!! We packed up quickly, and headed home as soon as possible. I had become so fixated on dealing with the calcium issues, I didn't have to think about much else. Until I got home...
Then I started having a few moments of calm. Moments of quiet are dangerous, because I think. And when I think, I think too much... Well, over the past two days, it seems like all I've done is gone through a fog. Every time I try to think, my brain shuts me down- I end up in a trance-like state. I think this is to protect myself from worrying about things that might never happen. I also think for the first few days, I had to get all the calcium normal before I could deal with life. Today was the first day that fog lifted, and I could start dealing.
Today I went to get my calcium levels checked again, and I have to travel to the hospital again on Wednesday afternoon to get them checked. This is unfortunate, because on top of recovering, I have to balance. I also return to work tomorrow (I am out of sick days!), so I don't have a choice but to embrace this hectic lifestyle. I am wondering if this will keep me from thinking about all sorts of yucky thoughts.
Today I was sitting in the hospital, waiting for my blood to be drawn. Montel Williams was on the Rachael Ray show, and he was talking about how he survives with multiple sclerosis. They had just shown a picture of him snowboarding, so my ears perked up when I thought about what words of wisdom he might have for me.
He said to get out there, to read EVERYTHING I could, and be the best advocate for myself that I could. I need to get an idea of all the options that are out there, of all the treatments, all the outcomes, and all the paths of life I might take. This will let me deal with everything, and will let me be active in my care.
The bald man makes a lot of sense... But that means I will have to finally sit still, think for a little bit, write down my long list of questions for my doctors, and research all I can. I want to make sure I make decisions that will give me the best outcome, and leave me here to ponder life for many years to come. That means doing some homework now. And thinking a little extra about all of this--I will have to lift my own fog.
I remember on Friday, looking across the room at my journal. I remember just getting the diagnosis of cancer, and remembering that for a person that writes about everything, that I should really write about how I felt at that moment. I was worried it would go away. I got up, made my way across the room to get the journal, and by the time I got back to my bed with a pen, I fell asleep. Un-thankfully, the memory of hearing those words never leaves, and I don't feel like I missed my moment. I am not saying I am having a pity party or have lost hope from the beginning- just saying it is an experience I will never forget. So thankfully, I didn't miss the moment of putting pen to paper. :-)
And in the coming days, I will be focusing on recovering slowly, being present in the moment, and trying not to take myself too seriously. And researching to become my best advocate for Friday. :-)
On Thursday morning, I woke up and seemed ready to get this surgery over with! We dropped the kids off to school, and I drove us to the hospital to check in. I didn't have to be to the hospital until 10am, which meant surgery wasn't starting until later. We seemed pretty relaxed the entire time, and I was just ready to put all of this behind me. I knew I would have a few days of discomfort, then I would be back to my old crazy self--encountering new adventures and telling stories to my friends.
I remember coming out of surgery feeling a little strange. I wasn't sure how long I'd been in there, and I vaguely remember falling asleep. Usually, it's a pretty relaxed experience (and it's sad it's happened so many times for me!). The strange thing about this time is they strapped an oxygen mask to my face, and I remember having a panicky feeling, thinking "something is NOT right!" Then I was out... So, coming out of surgery, I expected to feel miserable. Quite the contrary--I felt very chatty, and seemed to tell the nurse my entire life story. She was incredibly empathetic, and listened to all my jabbering. Actually, I seemed coherent, and it was the last case before she could go home, so she might have actually enjoyed herself. I was given a little extra pain medicine, she wished me well, and deposited me at my room for the night.
I was supposed to stay overnight to make sure my body could regulate calcium. Sometimes the parathyroid glands get damaged during surgery, and the calcium levels go haywire. This can cause all sorts of problems with muscles and the heart, and they watch to make sure nothing happens.
Well, the next morning it seemed like I was only going on a few hours of sleep. I figured the doctor would come by to discharge me, and then I could go home and sleep for the next few days. Then I would be back to work, and life would be back to NORMAL. The food services lady brought my breakfast tray, and I began eating. Shortly after eating my pancake, the doctor walked in.
He was a normally-chipper man, and he looked like he was making a real effort to be happy. I figured he was mad he had to come to the hospital (I was his only hospital case that day), or something else was happening. He asked me about symptoms, and checked my incision. It was when I asked about what he saw... I don't think for as long as I live I will forget the look on his face.
He backed up a few steps, and immediately started to fidget with my hospital blanket. I remember feeling an almost out-of-body experience as I watched him and wondered how many times he had to tell people bad things. I was trying to absorb what he was saying, and also think about what on earth he was saying, and why he was being fidgety all at the same time. I have to wonder what my face looked like at that moment. It must not have looked good, because for a moment he looked like he might cry.
He quickly told me I had two children already, so I'd probably want to opt for the radioactive iodine. That made me snap out of it. What was he talking about? I guess I hadn't fully digested the fact that the thyroid was out, let alone that I had cancer, or that I would be arranging treatment. I had to be honest, I really didn't know much about cancer, outside of the bits I read when people become diagnosed. I know things are so specific to different types, and it's not like I troll around morbid sites looking for cancer research. So, honestly, I had no idea what he was talking about. I could tell he understood that facial expression, because he paused, and said we could talk about all this once the pathology lab came back from the other half of the thyroid (I was diagnosed based on a 4cm papillary mass visually found on the left side- results are still out on the rest).
He then walked up to me and started tapping my face. My eyes started shuttering violently, and I realized I wasn't feeling well. He got quite an alarmed look on his face, while telling me that my calcium levels were dipping. This was causing the leg pains and restlessness (that I thought was anesthesia wearing off), and the scary actions of my muscles. He asked me if my face was numb- a bit, but I couldn't tell if that was my regular Topamax.
The staff jumped to action, starting me on calcium supplements via IV and orally. I didn't have much of an appetite, but I was trying to consume anything that had calcium. I was also taking Calciotrol, which is supposed to aid in the absorption of calcium. We were doing everything we could from keeping the numbers down. I desperately wanted out of the hospital- I hadn't seen the kids in a while, I had received a diagnosis of cancer, and I was now feeling anxious and miserable. From Friday to Saturday, those were NOT good hours in my life.
On Saturday, the push was to get the calcium stable so I could get out of the hospital. Thankfully, at the 3pm draw, I was stable, and we were able to leave!! We packed up quickly, and headed home as soon as possible. I had become so fixated on dealing with the calcium issues, I didn't have to think about much else. Until I got home...
Then I started having a few moments of calm. Moments of quiet are dangerous, because I think. And when I think, I think too much... Well, over the past two days, it seems like all I've done is gone through a fog. Every time I try to think, my brain shuts me down- I end up in a trance-like state. I think this is to protect myself from worrying about things that might never happen. I also think for the first few days, I had to get all the calcium normal before I could deal with life. Today was the first day that fog lifted, and I could start dealing.
Today I went to get my calcium levels checked again, and I have to travel to the hospital again on Wednesday afternoon to get them checked. This is unfortunate, because on top of recovering, I have to balance. I also return to work tomorrow (I am out of sick days!), so I don't have a choice but to embrace this hectic lifestyle. I am wondering if this will keep me from thinking about all sorts of yucky thoughts.
Today I was sitting in the hospital, waiting for my blood to be drawn. Montel Williams was on the Rachael Ray show, and he was talking about how he survives with multiple sclerosis. They had just shown a picture of him snowboarding, so my ears perked up when I thought about what words of wisdom he might have for me.
He said to get out there, to read EVERYTHING I could, and be the best advocate for myself that I could. I need to get an idea of all the options that are out there, of all the treatments, all the outcomes, and all the paths of life I might take. This will let me deal with everything, and will let me be active in my care.
The bald man makes a lot of sense... But that means I will have to finally sit still, think for a little bit, write down my long list of questions for my doctors, and research all I can. I want to make sure I make decisions that will give me the best outcome, and leave me here to ponder life for many years to come. That means doing some homework now. And thinking a little extra about all of this--I will have to lift my own fog.
I remember on Friday, looking across the room at my journal. I remember just getting the diagnosis of cancer, and remembering that for a person that writes about everything, that I should really write about how I felt at that moment. I was worried it would go away. I got up, made my way across the room to get the journal, and by the time I got back to my bed with a pen, I fell asleep. Un-thankfully, the memory of hearing those words never leaves, and I don't feel like I missed my moment. I am not saying I am having a pity party or have lost hope from the beginning- just saying it is an experience I will never forget. So thankfully, I didn't miss the moment of putting pen to paper. :-)
And in the coming days, I will be focusing on recovering slowly, being present in the moment, and trying not to take myself too seriously. And researching to become my best advocate for Friday. :-)
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