It's been interesting having people know. They immediately want to know how I'm doing when they see me. The answer is that I feel the exact same way I did before I found out that I had cancer. Nothing has changed. The biggest change is that I feel overwhelmed by the outpouring of support and love... I really do have great friends and family! Thank you!
Today, after a miserable morning... (Wait! let's talk about that for a minute before we go on...) On Sunday, the littlest girl hugged me and she winced in pain. I asked what was wrong and she said her cheek hurt. I looked down at her face and it looked slightly swollen. As the day went on, the cheek got more swollen. By the next morning, her cheek was sticking out twice as far as the other side. Not normal! Fortunately for her her, she was not in too much pain, just some slight discomfort. She has, not 1, but 2 abscess teeth that are causing her trouble. With the holiday yesterday, we had to wait until today to see the dentist. We left in plenty of time to get to our 9:10 appointment by 9:00. On the phone, they told me that I would be done by 9:30/9:40 just in time to make it to my 10:00 doctor's appointment for myself. SO... we left in plenty of time, except no one mentioned that we were in a hurry to the hundreds of other people that were late to work and crowding the streets and prolonging rush hour. We got to her 9:10 appointment at 9:20. So, instead of being 10 minutes early, we were 10 minutes late. This made it so that we weren't even done checking out or getting in my car until right about 10:00. Luckily, I called my doc's office and they had a 1:00 appt. and could take me later! Hurray!!
So, today, after a miserable morning, I had my regular doctor's visit. You know, the one that I am supposed to go to and tell the doctor that I have lost 5 more pounds and the one that I went to a month ago and told the doctor about the lump on my neck that led me to this whole crazy journey... yah, that one. Today, I went and he said, "So, how did you do?" I told him that I weighed pretty much the same as last month, because I do. That I think it's because I have been stress eating, a little, but that I am on my way back down, but it is slow progress. He gave me a look and said, "and what else?" I looked at him and said, "Well, I have Thyroid Cancer... (he looked a little shocked, so I gently reminded him...) which you told me about, but because of that, I have concerns about taking my thyroid out before we do a full thyroid panel. I REALLY want to do a full Thyroid Panel. My TSH levels are always normal... usually between 1-2, which is completely normal... but I have ALL of the symptoms of hypothyroidism. Before we take the thyroid out, I want to make sure that we know exactly what my body does with the hormones before we give it replacement hormones for the rest of my life. It just seems like a good idea." He nodded in agreement and said, "okay" and we continued to talk for a minute about thyroid cancer and my treatment. Then I said something about, "that's why I want to make sure that my body doesn't have a problem converting T4 to T3 or something..." He then started to tell me what other doctors have said, both in their offices to me and according to other patients in different forums on the internet... "Most people don't have a problem with T3. You won't have a problem. I don't think we'll see what you think we'll see." UGH... enough. When will everyone stop assuming that my body works exactly like it's supposed to? If it did, I wouldn't be overweight, exhausted, freezing, and have the inability to remember the fact that I bought an entire dessert for guests and forgot we had it, even when talking about how much we all would have really liked some dessert (brain fog is a symptom).
As the doctor drew my blood, I told him about the 2 endocrinologists. I told him about how the 2nd one suggested that I get a biopsy done on the lump on my back, just to make sure. He scowled. "No, it's just a lipoma. I can take it out here in the office in 10 minutes, if you want. It's not a big deal. But, if you want... I will send you to have an ultrasound done, just to make sure." He finished drawing my blood and set it aside to write that order. Then he wanted to look up what tests to run on the blood to put the codes on it. I started to tell him... "A comprehensive thyroid panel consists of Free T4, Free T3, Reverse T3, antibodies..." He interrupted me. "You don't need the antibody tests done, you are getting your thyroid out so it won't matter." I continued, "Those other 3 tests are the most important to me. I want those done for sure, but the antibody test is included in the full panel, they will test my thyroglobulin levels after surgery, so we don't need to test those now." He paused and looked up at me with a look that was half amused and half annoyed. "Let's start with these 3 and the TSH (which is also part of the full panel but I don't care about because mine is always normal) and go from there." Fine. Getting my T3 levels tested was more important to me than winning an argument about antibodies or full panels. We will call it a partial win.
I came home and made my appointment for my back ultrasound (soft tissue s---ll---). I wish I knew what that "s" word was. I swear it looks like surveillance. For once, Google was no help in decipherment. By tomorrow afternoon, some doctor should know for sure if that, in deed, is fatty tissue, or something more sinister looking... cue suspenseful music...
Tuesday, May 30, 2017
Monday, May 22, 2017
Everyone copes in their own way...
I just had an interesting observation and thought I should write it down... it's that each of us has handled this in our own, unique way.
When this wasn't a reality, just a possibility... I had no problem researching and preparing. For me, it was like putting together a 72 hour kit for an emergency or having that gross food storage that you hope you never have to use. I was ready, just in case. When the news came, I was fine because I was prepared. But I did shut down, just a little, and not want to deal with it, sometimes I just thought, "Ugh." Kind of like I was pouting because of the inconvenience of now having to deal with this problem, similar, I am sure, to the pouting I will do if I ever have to live off of the gross food storage food. But, like in all emergencies, you adapt and move on. So, I planned, shut down, then just moved forward.
My husband didn't want to talk about the "what if" beforehand. He finally just told me one night, "I don't like you talking about the possibility of you being sick." He didn't want to even THINK about it ahead of time. Once it moved from possibility to reality, he wanted to know everything. He wanted to start the planning phases of how to fix the problem. He was ready for a plan of attack. The problem was that at that point, I had moved from planning to not wanting to think about it and he went from not wanting to think about it to wanting to plan. Luckily, I didn't shut down completely, we both adapted and made a plan. Of course, his plan included a conference call into the doctor and I was fairly nervous about getting my questions answered and the last thing I wanted to do was make the doctor wait while I set up a conference call or make him wait on the call for who knows how long for the doctor to show up in the exam room. He was pretty disappointed when I told him that my anxiety levels would not allow me to even try to call him. So he closed himself off, then opened up, planned, and moved forward.
My oldest was with me when I found out, so he found out within minutes of me finding out. There was no time to sugar coat it. He took the information in, I explained the best I could with the little knowledge that I had, then I dropped him off at taekwondo. When I picked him up, he a question or 2, but that was it. I had asked him not to tell anyone, especially his siblings, because we needed to wait until we had more information. But, I found out just yesterday, that the day after he found out, he really needed to talk to someone about it and ended up telling a whole group of his friends, but was able to keep it a secret from his siblings and not say anything else to anyone else until at least his brother found out, then he told one teacher so he could have an adult to talk to. As time went on, he had time to think about it and would eventually begin to ask me questions (his most insightful - did he need to worry about increased chances of getting Thyroid Cancer at some point in the future - great question) So, he was quiet, exploded to friends once, then quietly thoughtful.
When the 2nd found out, he wanted to tell people and kept dropping hints, that were, luckily, too high above the girls' heads. He was able to keep it a secret until the girls knew... then he couldn't hold it in. He texted all 5 of his friends that he has phone numbers for to tell them all. He NEEDED to be free from the burden of the secret, more than the burden of the news. So, he was quiet until we opened the flood gates, then he was going to make sure everyone knew.
I wasn't sure how the girls would cope today. They were back at school and I wasn't sure if they were going to tell anyone or even remember that we had had the conversation yesterday. I emailed their teachers last night, alerting them, so that if the girls started sharing the news in their classrooms, I wouldn't get any frantic emails or calls from the school. I also wanted the teachers to have a good set of basic information just in case the news started floating around that they could verify it was all correct information and not some crazy rumor about me having 2 days to live.
The older of the 2 girls came home and said that she had only told so-and-so, so-and-so, so-and-so, so-and-so, so-and-so, so-and-so, and Mrs. J but not Mrs. P, because I had already emailed to tell her. Oh, is that all? :) So, I guess she copes by telling just about everyone. Not, explosively, like her oldest brother, but throughout the day.
She did tell me how one particular conversation went, when she was telling the daughter of a friend of mine.
"I told C at lunch today that you have Thyroid Cancer. She said, 'Oh, my gosh!' She looked shocked so I told her that it was okay and was very treatable (M put her hands up, in a "double stop" position and gently shook them, as if to calm down the invisible C in front of her) and that you just have to have surgery and then you will be okay. She said, 'My mom will have to bring you dinner tonight!' I told her that you were okay and could still cook... and that I have a dad. She then told me that her mom makes really good meatballs and I said, 'Well, so does my dad, his are stuffed with mozzarella cheese.' She said that sounded really good... "(her voice trailed off, I'm pretty sure the 2 girls sat there drooling, thinking about and talking about yummy food the rest of lunch.)
I emailed C's mom to tell her what a great girl she raised, wanting to help immediately. The mom emailed me back saying that she agreed with her daughter and after much argument with me about how it wasn't necessary, her stubbornness won out and she is now bringing me dinner on the night of my appointment with the surgeon... just so I don't have to worry about it that day! Such a great family. I am very blessed!!
I don't think my youngest told anyone today. I am hoping she didn't much think about it. She came into my room this morning and crawled into bed with me. She just wanted to snuggle. After school, she gave me big hugs. I hope her loving cuddles don't fade for a long, long, long time... they may make this whole thing bearable. So, I think she copes by needing to be near me and have the reassurance that I am still right here. I really don't mind it one bit!
Since the word it getting around faster than anticipated, I think I am going to share my news a little more widespread sooner rather than later. I had planned on waiting until after meeting with the surgeon and possibly having a surgery date, but with it getting around this quickly and in a bit of an unorganized fashion, I don't want anyone finding out later wondering why I told so-and-so but not them. This isn't a secret, it just hasn't been "published" yet.
When this wasn't a reality, just a possibility... I had no problem researching and preparing. For me, it was like putting together a 72 hour kit for an emergency or having that gross food storage that you hope you never have to use. I was ready, just in case. When the news came, I was fine because I was prepared. But I did shut down, just a little, and not want to deal with it, sometimes I just thought, "Ugh." Kind of like I was pouting because of the inconvenience of now having to deal with this problem, similar, I am sure, to the pouting I will do if I ever have to live off of the gross food storage food. But, like in all emergencies, you adapt and move on. So, I planned, shut down, then just moved forward.
My husband didn't want to talk about the "what if" beforehand. He finally just told me one night, "I don't like you talking about the possibility of you being sick." He didn't want to even THINK about it ahead of time. Once it moved from possibility to reality, he wanted to know everything. He wanted to start the planning phases of how to fix the problem. He was ready for a plan of attack. The problem was that at that point, I had moved from planning to not wanting to think about it and he went from not wanting to think about it to wanting to plan. Luckily, I didn't shut down completely, we both adapted and made a plan. Of course, his plan included a conference call into the doctor and I was fairly nervous about getting my questions answered and the last thing I wanted to do was make the doctor wait while I set up a conference call or make him wait on the call for who knows how long for the doctor to show up in the exam room. He was pretty disappointed when I told him that my anxiety levels would not allow me to even try to call him. So he closed himself off, then opened up, planned, and moved forward.
My oldest was with me when I found out, so he found out within minutes of me finding out. There was no time to sugar coat it. He took the information in, I explained the best I could with the little knowledge that I had, then I dropped him off at taekwondo. When I picked him up, he a question or 2, but that was it. I had asked him not to tell anyone, especially his siblings, because we needed to wait until we had more information. But, I found out just yesterday, that the day after he found out, he really needed to talk to someone about it and ended up telling a whole group of his friends, but was able to keep it a secret from his siblings and not say anything else to anyone else until at least his brother found out, then he told one teacher so he could have an adult to talk to. As time went on, he had time to think about it and would eventually begin to ask me questions (his most insightful - did he need to worry about increased chances of getting Thyroid Cancer at some point in the future - great question) So, he was quiet, exploded to friends once, then quietly thoughtful.
When the 2nd found out, he wanted to tell people and kept dropping hints, that were, luckily, too high above the girls' heads. He was able to keep it a secret until the girls knew... then he couldn't hold it in. He texted all 5 of his friends that he has phone numbers for to tell them all. He NEEDED to be free from the burden of the secret, more than the burden of the news. So, he was quiet until we opened the flood gates, then he was going to make sure everyone knew.
I wasn't sure how the girls would cope today. They were back at school and I wasn't sure if they were going to tell anyone or even remember that we had had the conversation yesterday. I emailed their teachers last night, alerting them, so that if the girls started sharing the news in their classrooms, I wouldn't get any frantic emails or calls from the school. I also wanted the teachers to have a good set of basic information just in case the news started floating around that they could verify it was all correct information and not some crazy rumor about me having 2 days to live.
The older of the 2 girls came home and said that she had only told so-and-so, so-and-so, so-and-so, so-and-so, so-and-so, so-and-so, and Mrs. J but not Mrs. P, because I had already emailed to tell her. Oh, is that all? :) So, I guess she copes by telling just about everyone. Not, explosively, like her oldest brother, but throughout the day.
She did tell me how one particular conversation went, when she was telling the daughter of a friend of mine.
"I told C at lunch today that you have Thyroid Cancer. She said, 'Oh, my gosh!' She looked shocked so I told her that it was okay and was very treatable (M put her hands up, in a "double stop" position and gently shook them, as if to calm down the invisible C in front of her) and that you just have to have surgery and then you will be okay. She said, 'My mom will have to bring you dinner tonight!' I told her that you were okay and could still cook... and that I have a dad. She then told me that her mom makes really good meatballs and I said, 'Well, so does my dad, his are stuffed with mozzarella cheese.' She said that sounded really good... "(her voice trailed off, I'm pretty sure the 2 girls sat there drooling, thinking about and talking about yummy food the rest of lunch.)
I emailed C's mom to tell her what a great girl she raised, wanting to help immediately. The mom emailed me back saying that she agreed with her daughter and after much argument with me about how it wasn't necessary, her stubbornness won out and she is now bringing me dinner on the night of my appointment with the surgeon... just so I don't have to worry about it that day! Such a great family. I am very blessed!!
I don't think my youngest told anyone today. I am hoping she didn't much think about it. She came into my room this morning and crawled into bed with me. She just wanted to snuggle. After school, she gave me big hugs. I hope her loving cuddles don't fade for a long, long, long time... they may make this whole thing bearable. So, I think she copes by needing to be near me and have the reassurance that I am still right here. I really don't mind it one bit!
Since the word it getting around faster than anticipated, I think I am going to share my news a little more widespread sooner rather than later. I had planned on waiting until after meeting with the surgeon and possibly having a surgery date, but with it getting around this quickly and in a bit of an unorganized fashion, I don't want anyone finding out later wondering why I told so-and-so but not them. This isn't a secret, it just hasn't been "published" yet.
Sunday, May 21, 2017
Playing with play dough and telling the girls...
So, Spencer was with me when I got the news, so he knew already. Carter was having a bad day a week ago Friday, so I felt like I should tell him... I know, I know... that sounds mean. For him, it works. He was very upset about his soccer game getting moved and messing up his plans for going to a friend's house. This after finding out that he was going to have a very, very long play rehearsal, and that he needed to finish his cooking project. He was so upset and kept rambling on about how unfair it all was that I finally said, "Well, I do have good news... I don't think I'm going to die." He stopped and looked at me, "Why would you die?" "Because I have cancer. But it's very treatable and they just have to take my thyroid out and it will all be gone, so it shouldn't really be a big deal." He sat there stunned for a second or two until I decided to break the silence, "I do have bad news, though." "What?" "The women on Nana's side of the family live until they are really old, so I'm probably going to live pretty much forever and never leave you alone... and always be in your business." He groaned. That was bad news. The situation was diffused and he had calmed down. He went from being nearly inconsolable to being nearly rational. Later that night, he said, "I'm more upset about not getting to go to my friend's house than I am about finding out that you have cancer." "Gee, thanks!" "Well, you know, you told me it wasn't a big deal... and I believe you. I think everything is going to be okay."
This morning, we called all of the kids together for "Family Home Evening." This is something encourage though our church as a weekly event, a set aside family time to discuss various topics to learn something to improve family life, increase individual spirituality, or encourage temporal self-improvement. It is typically held on Monday nights, but that usually doesn't work for our family because of soccer and taekwondo, so we have been trying to have it on Tuesday... except that hasn't been working out lately, either. Dave was leaving to go to Texas right after church, and we wanted to do this as a family, so 10:30am Sunday morning, it was... I passed out a piece of paper with a picture of an organ from the body to each child, along with a tiny tub of play dough. I instructed each child to use their play dough to construct their organ. Tayla did the heart, Miana the brain, Spencer the thyroid (in which he replied, "well, this is awkward"), Carter the stomach, Dave the kidneys and bladder (which he was on the phone so I actually sculpted for him), and I had the lungs. We then went around the circle and talked about what each thing did. I then took a different color play dough and added small bits to some of the other sculptures, saying, "sometimes, our organs have cells that don't belong on them that begin to grow on them. That's what we call cancer. So if someone says they have cancer, it usually means they have cells growing in a place or in a way that they shouldn't be." I then took Spencer's thyroid sculpture and added a few "cancer" cells to his. I said, "This is the kind of cancer that I have. It's on my thyroid. The way we are going to get rid of it is to cut out my whole thyroid, then the cancer will be gone from my body and I will be just fine."
The girls didn't say much. I think they were trying to take it in and process the information. Dave talked about everyone needed to help out while I recovering from surgery and possibly having other treatment. The girls didn't have any questions, really. At one point, Carter looked at me and said, in a loud whisper across the table, "I don't think they get it." I think he was expecting some crying, or them being upset. They did both ask me a few more questions about it this evening, but neither one has been very upset by the news. I am very grateful for that!!
So, there you have it. It's all out there. Once the kids all knew, the word suddenly spread fast. Carter, apparently, texted some friends this morning to tell them all. Because, why not?
This morning, we called all of the kids together for "Family Home Evening." This is something encourage though our church as a weekly event, a set aside family time to discuss various topics to learn something to improve family life, increase individual spirituality, or encourage temporal self-improvement. It is typically held on Monday nights, but that usually doesn't work for our family because of soccer and taekwondo, so we have been trying to have it on Tuesday... except that hasn't been working out lately, either. Dave was leaving to go to Texas right after church, and we wanted to do this as a family, so 10:30am Sunday morning, it was... I passed out a piece of paper with a picture of an organ from the body to each child, along with a tiny tub of play dough. I instructed each child to use their play dough to construct their organ. Tayla did the heart, Miana the brain, Spencer the thyroid (in which he replied, "well, this is awkward"), Carter the stomach, Dave the kidneys and bladder (which he was on the phone so I actually sculpted for him), and I had the lungs. We then went around the circle and talked about what each thing did. I then took a different color play dough and added small bits to some of the other sculptures, saying, "sometimes, our organs have cells that don't belong on them that begin to grow on them. That's what we call cancer. So if someone says they have cancer, it usually means they have cells growing in a place or in a way that they shouldn't be." I then took Spencer's thyroid sculpture and added a few "cancer" cells to his. I said, "This is the kind of cancer that I have. It's on my thyroid. The way we are going to get rid of it is to cut out my whole thyroid, then the cancer will be gone from my body and I will be just fine."
The girls didn't say much. I think they were trying to take it in and process the information. Dave talked about everyone needed to help out while I recovering from surgery and possibly having other treatment. The girls didn't have any questions, really. At one point, Carter looked at me and said, in a loud whisper across the table, "I don't think they get it." I think he was expecting some crying, or them being upset. They did both ask me a few more questions about it this evening, but neither one has been very upset by the news. I am very grateful for that!!
So, there you have it. It's all out there. Once the kids all knew, the word suddenly spread fast. Carter, apparently, texted some friends this morning to tell them all. Because, why not?
Friday, May 19, 2017
Grateful
Today, I find myself grateful for our health insurance. I just got my first bill for all of this... the one for my very first ultrasound. My insurance company was charged $600 for that ultrasound... they want me to pay about $15. Yep, that's it. I'm very grateful for that. My insurance allowed me to go see 2 different endocrinologists to make sure I found one I liked (You know what? My insurance company actually encourages you to get a 2nd or even 3rd opinion on major diagnoses) and from what I can tell, every thing will be covered, more or less... although I can't seem to find any information on the radioactive iodine, and that, depending on the dosage, can be in the thousands.
I am just grateful... and feeling a little guilty (my cancer is so easy compared to some!). This rainy day is not getting me down!
I am just grateful... and feeling a little guilty (my cancer is so easy compared to some!). This rainy day is not getting me down!
Wednesday, May 17, 2017
Reflecting: Light and overcoming the darkness
For the first Wednesday for weeks, I didn't have any doctor's appointments or obligations with my children today, so I actually got to go to my scripture study class! We were covering 1 John chapters 1-5. I felt like it was for me. So many times the teacher repeated the word, "overcoming." Overcoming trials. Overcoming fear. Overcoming doubt. That wasn't EVEN what the class was on, really... the lesson was focussing on what we need to do to live our lives to have a "fellowship" with God and the Savior and what that means. It's just ONE of the many blessings of said fellowship is the ability to overcome darkness in our lives. Darkness, not only being things that are not righteous, but are our trials and difficulties, as well.
I actually thought about this the other day. My kids were talking about colors and said something about the combination of all colors was black... I explained to them that with color (pigment), white is the absence of it but black is the combination of all of it, but when you are dealing with light, the opposite is true... black (darkness) is the absence of light, but white light is the combination of all colors of light. While talking to them, we were pulling into the church parking lot and I had the scripture pop into my head that says, "I am the light of the world." (John 8:12 - Then spake Jesus again unto them, saying, I am the alight of the world: he that followeth me shall not bwalk in cdarkness, but shall have the light of life.) RIGHT THEN, I had the thought that it means 2 things... our Savior is EVERYTHING (white light being the combination of all light), and that light and dark can not occupy the same space. By definition, darkness is the absence of light. So, there can not be any light in the darkness nor darkness in the light... there is either light OR darkness. If you are in a dark room and introduce light, no matter how small, it overcomes, the surrounding darkness, it is never consumed by the darkness - it always prevails. The only way to overcome light is to intentionally block it out or cover it up or put distance between you and the source. We have to stay close to the Savior and not block Him out... then He will ALWAYS overcome the darkness in our lives.
I think most people naturally feel a bit of fear in the darkness, mostly because it represents the unknown. When it is dark, we can't see our surroundings. I think for me, that's the fear I've been feeling the most when I do feel it. I had one moment today when I put my hand on my throat and could feel my swollen lymph node and wondered why it was so swollen for so long... what is it trying to tell me? Then I had the thought, clear as day... I have cancer. Oh, my goodness... there is cancer in my body. That is scary! Then, just as suddenly, whoosh! Peace... calm... a reminder that I am just fine. I was fine before I knew I had cancer, I will be fine after I have surgery. I am fine. There is only peace.
The teacher also read from St. John.
John 16:33
33 These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.
How perfect is that? How is that not speaking directly to me and exactly what I have been feeling about overcoming and having peace? I know the teacher, he is in my congregation, but he doesn't know about my diagnosis. He was inspired to share this today, I know he was.
The teacher then closed with one more scripture about casting out fear and then referenced something else, completely out of the blue. It was a story from the Old Testament and he sort of just reference in passing as he ended the class. He said, "this scripture reminds me of that story with Elisha and the army was surrounding them and the servant was scared and Elisha told him that there were more with them than against them and then asked the Lord to open his eyes and he saw the mountains full of angels."
2 Kings 6
I actually thought about this the other day. My kids were talking about colors and said something about the combination of all colors was black... I explained to them that with color (pigment), white is the absence of it but black is the combination of all of it, but when you are dealing with light, the opposite is true... black (darkness) is the absence of light, but white light is the combination of all colors of light. While talking to them, we were pulling into the church parking lot and I had the scripture pop into my head that says, "I am the light of the world." (John 8:12 - Then spake Jesus again unto them, saying, I am the alight of the world: he that followeth me shall not bwalk in cdarkness, but shall have the light of life.) RIGHT THEN, I had the thought that it means 2 things... our Savior is EVERYTHING (white light being the combination of all light), and that light and dark can not occupy the same space. By definition, darkness is the absence of light. So, there can not be any light in the darkness nor darkness in the light... there is either light OR darkness. If you are in a dark room and introduce light, no matter how small, it overcomes, the surrounding darkness, it is never consumed by the darkness - it always prevails. The only way to overcome light is to intentionally block it out or cover it up or put distance between you and the source. We have to stay close to the Savior and not block Him out... then He will ALWAYS overcome the darkness in our lives.
I think most people naturally feel a bit of fear in the darkness, mostly because it represents the unknown. When it is dark, we can't see our surroundings. I think for me, that's the fear I've been feeling the most when I do feel it. I had one moment today when I put my hand on my throat and could feel my swollen lymph node and wondered why it was so swollen for so long... what is it trying to tell me? Then I had the thought, clear as day... I have cancer. Oh, my goodness... there is cancer in my body. That is scary! Then, just as suddenly, whoosh! Peace... calm... a reminder that I am just fine. I was fine before I knew I had cancer, I will be fine after I have surgery. I am fine. There is only peace.
The teacher also read from St. John.
John 16:33
33 These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.
How perfect is that? How is that not speaking directly to me and exactly what I have been feeling about overcoming and having peace? I know the teacher, he is in my congregation, but he doesn't know about my diagnosis. He was inspired to share this today, I know he was.
The teacher then closed with one more scripture about casting out fear and then referenced something else, completely out of the blue. It was a story from the Old Testament and he sort of just reference in passing as he ended the class. He said, "this scripture reminds me of that story with Elisha and the army was surrounding them and the servant was scared and Elisha told him that there were more with them than against them and then asked the Lord to open his eyes and he saw the mountains full of angels."
2 Kings 6
16 And he answered, Fear not: for they that be with us are more than they that be with them.
17 And Elisha prayed, and said, Lord, I pray thee, open his eyes, that he may see. And the Lord opened the eyes of the young man; and he saw: and, behold, the mountain was full of horses and chariots of fire round about Elisha.
I left the class with that phrase repeating through my head and feeling like, again, it was meant for me. This evening I have been reflecting on my support system. Not only has my family been offering tremendous support, but I have mentioned the support of just a few of my friends on here, but I have several more that know of my situation and have been just as wonderful. On top of that, I support coming in from far and wide (literally across the country), people that I don't have regular contact with, but as they hear about this, send their support... It is very touching, really! My sister's ex-husband, contacted me on Saturday to offer his support and encouragement and my other sister's mother-in-law, called my sister yesterday, just to say that she was thinking about me and had a message for me. I really appreciate the concern. My family, friends, neighbors, community members, congregation members... all of them make up an incredible army of angels that I have surrounding me. There are more with me than I can even imagine!!Tuesday, May 16, 2017
Endocrinologist 2: That's what I know... this is what I don't know
So, this morning, I went to the school to do flashcards like I normally do... because life goes on. We still haven't told the girls, but I think the time is coming quicker than I had intended (more on that later.) I chatted about my condition and treatment plan (or current lack thereof) with Jo-Anne (one of the secretaries in the school office). Having been through cancer herself, although a much more difficult situation than this, she understands the emotions I have been through and the fear I have felt. She always knows how to boost my spirits... she even said she wished she could have taken the day off to go with me to my appointment today. That totally made my day! I really do have the best support system possible. I love these people, all of them. How is it possible that I know so many AMAZING people? I am truly blessed.
I came home and had a hard time waiting for my appointment time to come around. I had about an hour to kill and couldn't quite bring myself to accomplish any 1 complete task, but fiddled around with a bunch of different little things here and there. I did, however, type up my questions for the doctor so that they would be on a big, regular size sheet of paper (not on my phone) so that I could look at them and know what I wanted to ask and not forget anything.
I emailed Jo-Anne. I texted Susannah. I cleaned the hallway. I straightened the bathroom. I printed my list of questions. I put some breakfast dishes in the sink. I cleared my computer desk to get ready for meeting this afternoon. Anything to get my mind off of "the wait." Finally, it was time to go and I headed out.
I got to the office and signed in. Chad barely let me write my name down before he took me back. He took my vitals and took me back to the exam room. I waited there about 3 minutes. That's it... record time for meeting a doc. Dr. V is young. I'm just guessing, based on her year of graduation from medical school (so somewhat educated guess), that she is in her early 30s. She walked in, sat down, looked me in the eye, and said, "Tell me what you know."
"I know I have Papillary Thyroid Carcinoma. We are going to treat it by having surgery to remove my thyroid. It's on both sides, so we're doing a total thyroidectomy. Then, depending on what the surgeon finds, you will decide whether or not I will need to have radioactive iodine treatment after that. Also, for the rest of my life, I will need to take pills to replace the hormones that my thyroid is supposed to make."
She nodded and smiled, "You don't need me. You already know everything."
"That's everything I know..." Then I pointed to my printout of questions, sitting on the counter next to me, "...this is everything I don't know. These are my questions."
"Well, let's get started! What can I have you with?"
"What stage cancer is this? I don't know."
"I don't know that either. We won't know for sure until we do surgery..." She then went on to answer that question in greater detail and each of my following questions in equally great detail. She didn't rush through the appointment and spent nearly 35 minutes with me, not going over information I already knew, but explaining things I actually needed to know. How long I would be radioactive and need to stay away from my kids if I did the treatment (depends on the dose, but usually only 1 week). How long before I would do that treatment, if it was necessary (2-3 months after surgery). Then, I asked about my lipoma. She had a totally different take on it than Dr. You-should-get-that-removed-because-people-will-see-it did... she said that I should bring it up with my PCP because now that I have had one type of cancer, he might want to get it biopsied. If it is just a lipoma, like we think, then no big deal. If it is a different form of cancer, it will tell us that we need to do a full body scan NOW and make sure there are no other cancers anywhere. She said if he didn't want to do the biopsy, it's fine, we can wait. I'm going to have a full body scan 6 months after my surgery anyway to check for left over cancer in the body and the cells would "light up" at that time, so I was fine to wait. But she did say one more time, that if it were her, she'd get the biopsy.
I asked about the Thyroid panel. No one seems concerned about this, yet it makes perfect sense to me. When a doctor checks normal blood work for thyroid function, they test TSH levels. TSH (Thyroid Signaling Hormone) is a hormone not made by your thyroid, but rather your pituitary gland. So, basically, when your TSH levels are normal, all that means is that your pituitary gland thinks your thyroid is normal, doesn't mean it actually is or isn't. Your thyroid makes T4 hormone (it has a super fancy chemical/scientific name, but mostly referred to as T4.) It also makes some other lesser hormones and binding agents and stuff, but we're not getting into that here. T4 is important, but not very active. Your body reacts to the T4 and converts it to T3, which is VERY active. T3 is responsible for EVERYTHING in your body that the thyroid is responsible for, just about. So, a full thyroid panel checks for the T4, free T4, T3, free T3, the binding agents, all the other lesser hormones, and TRH (TSH Releasing Hormone) which is produced by the hypothalamus. This panel lets the doctors know what you have going on in your body with your thyroid and what your body will absorb properly and what it won't. Is your thyroid getting the message from the pituitary? Is the pituitary "in tune" with thyroid? Long story... but anyway... I felt like I should have this blood test run. I asked for it. She said it wasn't necessary. I told her I thought it could reveal some answers to symptoms that I've been having for years. She disagreed with what it could find, but wrote the order for the blood work, anyway... I thought it was a victory... until I got home and saw that the order was for 2 tests: TSH levels and free T4, not a full panel... progress, but not the victory I was hoping for... I am going to insist I get this from my PCP.
Bad news... this doc also mentioned gaining weight after the surgery while trying to get the dosage right on the thyroid meds... said it is expected... almost inevitable... not much we can do about it. I wondered what that meant, exactly so I Googled when I got home... Ugh... 20-30lbs!!! Are you kidding me?!?! I can't. I just can't. I'd rather live with cancer. No, I wouldn't. It's just not fair, I have worked hard to get here... other cancer patients lose weight spontaneously, just by having cancer, why do I get the one kind that makes you GAIN it!! So annoying.
The final thing that I talked to Dr. V about was surgery. I saved this topic for last, here on my blog, on purpose. That's because it was the most stark difference in what I had been told all along. I told her I found a surgeon I wanted to use but wanted to hear her recommendations before I said who it was (I wanted to know if they matched without influencing her recommendations). She said, "Dr. P, but he has a long wait list." I smiled and said that's who I had found, through my research, as well, and that I had an appointment with him on Aug. 29. She scowled. "See? That's a long time. I would like you to get in sooner. There is also Dr. L and Dr. S. They are here, locally. I haven't used them, but my associate has had very positive experiences with them. I know DC is far from here, but if you are willing to go, I can recommend Dr. R, Dr. C, and Dr. F. I have worked with all of them and they are amazing doctors and do very good work. I did my fellowship with them and when I left, one of them told me that if I ever needed a patient to get in faster than what they normally could do, to email them and they would get them in." I smiled, broadly, at her, I think I was just about bursting...
"Dr. Jennifer R? She's an endocrine surgeon at WHC?"
"Yes..."
I sighed a deep sigh of relief. What are the chances that the EXACT practice that I had come across FIRST in my research, the one I loved the most, the one that SPECIALIZES in my kind of surgery, is the EXACT one that this doctor did her Fellowship with and that she has connections with? What are the chances? I had dismissed them as soon as I found Dr. P, who was closer and just as specialized... I felt like finding him was miraculous, but to have this group fall back into my lap and I was fairly certain from the beginning they were the ones I wanted to use. How cool is that?
"If you can't get in to see one of them in June, just even to talk to them, let me know. I will contact them and get you. I want you to talk to a surgeon in June, even if you don't have your surgery in June."
"Well, I was REALLY hoping to have my surgery in early August. We are going to be traveling the beginning of July and the end of July and I don't want to be recovering while on either one of those trips... So, I was thinking I could meet with the surgeon in between those 2 trips and then schedule the surgery for early August."
"Hmmm... I don't like the idea of you waiting that long. You had swollen lymph nodes. They didn't show any abnormal tissue in the scan, but we won't know for sure until they do the surgery if the cancer has spread to those surrounding areas. This is a slow growing cancer and if you didn't have those swollen lymph nodes, I would tell you to wait, but those lymph nodes are making me uneasy and I really want to get you in sooner, rather than later. At least talk to the surgeon in June, even if you don't have the surgery in June."
That was not the first time someone had mentioned having the surgery in June to me... Jo-Anne said it, 2 weeks ago! My mom asked about a week ago! But it doesn't fit with my travel plans. I have to load a car, by myself at the end of June and drive to PA to pick up my husband and then help drive across country... driving requires turning your head, a lot... I can't be recovering from neck surgery.
But, this was the first time a doctor mentioned needing the surgery that soon. She then went on to suggest that I "consider" having the surgery between trips in July, if possible. That is more possible, but would still be inconvenient. I will wait and talk to the surgeon about it, especially after she has reviewed my images and seen all of the reports. I think waiting 2 more weeks to the very beginning of August would probably be okay... right? We'll have to see what the surgeon says.
As I left the office, Chad stopped me and said, "You know that if you can't get in to see a surgeon soon, you are supposed to contact us and we will make the appointment for you, right?" I seriously love this practice.
I came home from my appointment and found the contact info for Dr. R. She had an online appointment system (yay! I hate talking to people!) She has 2 different office locations... first one showed June 30 as the first available appointment... okay, that's June... 2nd one showed... June 12!!!
I made the appointment! About an hour later I got a call from her office stating that they actually needed to cancel that appointment time, but wanted to know if I was available on June 5, a full week earlier. Um, yes!! That is in just 3 weeks from yesterday, I will meet with a specialist surgeon... not in 3 months. I didn't even need to use Dr. V's connections to get the appointment, either!
I'm nervous and excited to see where this goes. I am NOT, I repeat, NOT, excited about driving into DC. I do not like cities. I do not like driving in cities. I do like DC. I do not like driving in DC. (It is not just a city, it is a special kind of personal hell for me, so it gets it's own category.) Ugh, I'm starting to have a panic attack just thinking about it... but I feel like it will be worth it.
I came home and had a hard time waiting for my appointment time to come around. I had about an hour to kill and couldn't quite bring myself to accomplish any 1 complete task, but fiddled around with a bunch of different little things here and there. I did, however, type up my questions for the doctor so that they would be on a big, regular size sheet of paper (not on my phone) so that I could look at them and know what I wanted to ask and not forget anything.
I emailed Jo-Anne. I texted Susannah. I cleaned the hallway. I straightened the bathroom. I printed my list of questions. I put some breakfast dishes in the sink. I cleared my computer desk to get ready for meeting this afternoon. Anything to get my mind off of "the wait." Finally, it was time to go and I headed out.
I got to the office and signed in. Chad barely let me write my name down before he took me back. He took my vitals and took me back to the exam room. I waited there about 3 minutes. That's it... record time for meeting a doc. Dr. V is young. I'm just guessing, based on her year of graduation from medical school (so somewhat educated guess), that she is in her early 30s. She walked in, sat down, looked me in the eye, and said, "Tell me what you know."
"I know I have Papillary Thyroid Carcinoma. We are going to treat it by having surgery to remove my thyroid. It's on both sides, so we're doing a total thyroidectomy. Then, depending on what the surgeon finds, you will decide whether or not I will need to have radioactive iodine treatment after that. Also, for the rest of my life, I will need to take pills to replace the hormones that my thyroid is supposed to make."
She nodded and smiled, "You don't need me. You already know everything."
"That's everything I know..." Then I pointed to my printout of questions, sitting on the counter next to me, "...this is everything I don't know. These are my questions."
"Well, let's get started! What can I have you with?"
"What stage cancer is this? I don't know."
"I don't know that either. We won't know for sure until we do surgery..." She then went on to answer that question in greater detail and each of my following questions in equally great detail. She didn't rush through the appointment and spent nearly 35 minutes with me, not going over information I already knew, but explaining things I actually needed to know. How long I would be radioactive and need to stay away from my kids if I did the treatment (depends on the dose, but usually only 1 week). How long before I would do that treatment, if it was necessary (2-3 months after surgery). Then, I asked about my lipoma. She had a totally different take on it than Dr. You-should-get-that-removed-because-people-will-see-it did... she said that I should bring it up with my PCP because now that I have had one type of cancer, he might want to get it biopsied. If it is just a lipoma, like we think, then no big deal. If it is a different form of cancer, it will tell us that we need to do a full body scan NOW and make sure there are no other cancers anywhere. She said if he didn't want to do the biopsy, it's fine, we can wait. I'm going to have a full body scan 6 months after my surgery anyway to check for left over cancer in the body and the cells would "light up" at that time, so I was fine to wait. But she did say one more time, that if it were her, she'd get the biopsy.
I asked about the Thyroid panel. No one seems concerned about this, yet it makes perfect sense to me. When a doctor checks normal blood work for thyroid function, they test TSH levels. TSH (Thyroid Signaling Hormone) is a hormone not made by your thyroid, but rather your pituitary gland. So, basically, when your TSH levels are normal, all that means is that your pituitary gland thinks your thyroid is normal, doesn't mean it actually is or isn't. Your thyroid makes T4 hormone (it has a super fancy chemical/scientific name, but mostly referred to as T4.) It also makes some other lesser hormones and binding agents and stuff, but we're not getting into that here. T4 is important, but not very active. Your body reacts to the T4 and converts it to T3, which is VERY active. T3 is responsible for EVERYTHING in your body that the thyroid is responsible for, just about. So, a full thyroid panel checks for the T4, free T4, T3, free T3, the binding agents, all the other lesser hormones, and TRH (TSH Releasing Hormone) which is produced by the hypothalamus. This panel lets the doctors know what you have going on in your body with your thyroid and what your body will absorb properly and what it won't. Is your thyroid getting the message from the pituitary? Is the pituitary "in tune" with thyroid? Long story... but anyway... I felt like I should have this blood test run. I asked for it. She said it wasn't necessary. I told her I thought it could reveal some answers to symptoms that I've been having for years. She disagreed with what it could find, but wrote the order for the blood work, anyway... I thought it was a victory... until I got home and saw that the order was for 2 tests: TSH levels and free T4, not a full panel... progress, but not the victory I was hoping for... I am going to insist I get this from my PCP.
Bad news... this doc also mentioned gaining weight after the surgery while trying to get the dosage right on the thyroid meds... said it is expected... almost inevitable... not much we can do about it. I wondered what that meant, exactly so I Googled when I got home... Ugh... 20-30lbs!!! Are you kidding me?!?! I can't. I just can't. I'd rather live with cancer. No, I wouldn't. It's just not fair, I have worked hard to get here... other cancer patients lose weight spontaneously, just by having cancer, why do I get the one kind that makes you GAIN it!! So annoying.
The final thing that I talked to Dr. V about was surgery. I saved this topic for last, here on my blog, on purpose. That's because it was the most stark difference in what I had been told all along. I told her I found a surgeon I wanted to use but wanted to hear her recommendations before I said who it was (I wanted to know if they matched without influencing her recommendations). She said, "Dr. P, but he has a long wait list." I smiled and said that's who I had found, through my research, as well, and that I had an appointment with him on Aug. 29. She scowled. "See? That's a long time. I would like you to get in sooner. There is also Dr. L and Dr. S. They are here, locally. I haven't used them, but my associate has had very positive experiences with them. I know DC is far from here, but if you are willing to go, I can recommend Dr. R, Dr. C, and Dr. F. I have worked with all of them and they are amazing doctors and do very good work. I did my fellowship with them and when I left, one of them told me that if I ever needed a patient to get in faster than what they normally could do, to email them and they would get them in." I smiled, broadly, at her, I think I was just about bursting...
"Dr. Jennifer R? She's an endocrine surgeon at WHC?"
"Yes..."
I sighed a deep sigh of relief. What are the chances that the EXACT practice that I had come across FIRST in my research, the one I loved the most, the one that SPECIALIZES in my kind of surgery, is the EXACT one that this doctor did her Fellowship with and that she has connections with? What are the chances? I had dismissed them as soon as I found Dr. P, who was closer and just as specialized... I felt like finding him was miraculous, but to have this group fall back into my lap and I was fairly certain from the beginning they were the ones I wanted to use. How cool is that?
"If you can't get in to see one of them in June, just even to talk to them, let me know. I will contact them and get you. I want you to talk to a surgeon in June, even if you don't have your surgery in June."
"Well, I was REALLY hoping to have my surgery in early August. We are going to be traveling the beginning of July and the end of July and I don't want to be recovering while on either one of those trips... So, I was thinking I could meet with the surgeon in between those 2 trips and then schedule the surgery for early August."
"Hmmm... I don't like the idea of you waiting that long. You had swollen lymph nodes. They didn't show any abnormal tissue in the scan, but we won't know for sure until they do the surgery if the cancer has spread to those surrounding areas. This is a slow growing cancer and if you didn't have those swollen lymph nodes, I would tell you to wait, but those lymph nodes are making me uneasy and I really want to get you in sooner, rather than later. At least talk to the surgeon in June, even if you don't have the surgery in June."
That was not the first time someone had mentioned having the surgery in June to me... Jo-Anne said it, 2 weeks ago! My mom asked about a week ago! But it doesn't fit with my travel plans. I have to load a car, by myself at the end of June and drive to PA to pick up my husband and then help drive across country... driving requires turning your head, a lot... I can't be recovering from neck surgery.
But, this was the first time a doctor mentioned needing the surgery that soon. She then went on to suggest that I "consider" having the surgery between trips in July, if possible. That is more possible, but would still be inconvenient. I will wait and talk to the surgeon about it, especially after she has reviewed my images and seen all of the reports. I think waiting 2 more weeks to the very beginning of August would probably be okay... right? We'll have to see what the surgeon says.
As I left the office, Chad stopped me and said, "You know that if you can't get in to see a surgeon soon, you are supposed to contact us and we will make the appointment for you, right?" I seriously love this practice.
I came home from my appointment and found the contact info for Dr. R. She had an online appointment system (yay! I hate talking to people!) She has 2 different office locations... first one showed June 30 as the first available appointment... okay, that's June... 2nd one showed... June 12!!!
I made the appointment! About an hour later I got a call from her office stating that they actually needed to cancel that appointment time, but wanted to know if I was available on June 5, a full week earlier. Um, yes!! That is in just 3 weeks from yesterday, I will meet with a specialist surgeon... not in 3 months. I didn't even need to use Dr. V's connections to get the appointment, either!
I'm nervous and excited to see where this goes. I am NOT, I repeat, NOT, excited about driving into DC. I do not like cities. I do not like driving in cities. I do like DC. I do not like driving in DC. (It is not just a city, it is a special kind of personal hell for me, so it gets it's own category.) Ugh, I'm starting to have a panic attack just thinking about it... but I feel like it will be worth it.
Monday, May 15, 2017
Why this Blog Title? What does it mean, exactly??
So, the thyroid is always described as the butterfly-shaped organ in your neck... ALWAYS. I also had a bump on my neck that sent me into the discovery of all of this. I immediately thought of the fact that one of the feelings I have felt from the beginning was that fear of the unknown... and felt that it was fitting that 2 of the phrases that mean to be nervous or anxious are "I have butterflies in my stomach" and "I have a lump in my throat." I actually had intended to say something like: I have butterflies in stomach and lump in throat, or is it a butterfly in throat and lump on the butterfly... this thing has me all turned inside out and upside down!
But, as I have been going over and over and over what is happening and will happen, I keep having scriptures pop into my head. I can not get this one out. It has been my constant reminder that I am feeling peace for a reason.
D&C 6:36
36 Look unto me in every thought; doubt not, fear not.
This is the Lord speaking. Did you catch the phrasing on this, this is a commandment, not a suggestion. We are commanded not to doubt. We are commanded not to fear. Those emotions do NOT come from or through Him.
It's interesting. I have had this scripture going through my mind constantly. I have known it. I knew that I prayed for peace and that I have had it. BUT, tonight, when I looked up this scripture to put it here, I found this verse, in the same section, just a few verses up.
D&C 6:23
23 Did I not speak peace to your mind concerning the matter? What greater witness can you have than from God?
I couldn't have said it better myself. He has given me the exact peace I asked for. I know it is from Him. We can have no greater promise than the ones that come from Him.
It is for this very reason that I changed the name of the blog to include the commandment to not doubt and not fear, even when we have a bump on the road, are taking our lumps, and even have butterfly troubles.
Prayer works. I know it because I have seen it!
Here is a link to the rest of D&C 6, should you want to read it, it's a good one:
https://www.lds.org/scriptures/dc-testament/dc/6.22-23
But, as I have been going over and over and over what is happening and will happen, I keep having scriptures pop into my head. I can not get this one out. It has been my constant reminder that I am feeling peace for a reason.
D&C 6:36
36 Look unto me in every thought; doubt not, fear not.
This is the Lord speaking. Did you catch the phrasing on this, this is a commandment, not a suggestion. We are commanded not to doubt. We are commanded not to fear. Those emotions do NOT come from or through Him.
It's interesting. I have had this scripture going through my mind constantly. I have known it. I knew that I prayed for peace and that I have had it. BUT, tonight, when I looked up this scripture to put it here, I found this verse, in the same section, just a few verses up.
D&C 6:23
23 Did I not speak peace to your mind concerning the matter? What greater witness can you have than from God?
I couldn't have said it better myself. He has given me the exact peace I asked for. I know it is from Him. We can have no greater promise than the ones that come from Him.
It is for this very reason that I changed the name of the blog to include the commandment to not doubt and not fear, even when we have a bump on the road, are taking our lumps, and even have butterfly troubles.
Prayer works. I know it because I have seen it!
Here is a link to the rest of D&C 6, should you want to read it, it's a good one:
https://www.lds.org/scriptures/dc-testament/dc/6.22-23
First appointment with an endocrinologist: You are fragile, I don't want to break you... but I'm not afraid to hurt your feelings by telling you to get plastic surgery.
My friend, Emily, and I went to my first appointment today with Dr. D, the Endo recommended by my PCP.
BUT, just before leaving my house, I got a call from Chad at Dr. V's office. They can see me tomorrow!! I'm super excited!! I'm counting this as one more miracle to add to the list!
Her staff was nice and friendly. Everyone greeted me like I was someone they had to be careful with. Speaking gently, quietly, calm tones. Nodding "knowingly" when I spoke. It was like no one wanted upset me. I think they expected me to get upset at some point. I have to admit, it It was a little strange filling out the paperwork.
"What brings you into our office today?" _____Thyroid Cancer____
and
Personal Medical History: (check all that apply)
_ ✔_ Cancer
After filling everything out, they took me back to the exam room. I took Emily with me to be a 2nd set of ears because my husband was out of town. Then, the doctor asked her to wait in the waiting room and that we were going to talk first and said she would come get her in a minute. I was disappointed.
The doctor then asked me when my last physical was. Wanted to know how often I see the doctor. When I told her that I see him monthly for my weight-loss and that I had lost 80 lbs, she thought I said 30 lbs. I happily corrected her, but then told her that I have about 40 more to go. She asked me about medications (I just filled all that out in the chart, do we have to go over it again, there are so many!) She asked if I had a lot of dental work as a child or any other exposure to radiation when I was young. She wanted to know about my c-sections, etc. Then, she asked how it was we came to do an ultrasound of my thyroid. So, far, all of this was stuff Emily knew, more or less. Then, she began to explain how I got cancer... not why... no one knows why... she even said that, she said, "you had no risk factors for it." She said that some people just get nodules on their thyroid and sometimes, those nodules just turn out to be cancerous. She explained that this cancer is extremely treatable. She spoke calmly and quietly, she didn't want me to get upset. I'm sure she kept expecting me to fall apart any second, I know she was trying to reassure me... "If I were to put you in a room, with a list of all the cancers in the world and tell you that you HAD to have one, THIS is the one you'd pick." I tried not to cringe out loud... "BUT, you didn't choose this, it was thrown on you. Now, we're going to take care of it." Okay, that was better, I guess...
I wondered if this is when we were going to call Emily in... nope! She then began going over HOW we treat it. Surgery. She then continued, in her most reassuring voice, "I want you to know that you are going to be okay and this is not an emergency." She would give some names, if I needed them, I would see a surgeon, he'd go over risks with me, set up the surgery date. Once I had a date, I'd call her office, make an appointment for 1 week afterwards. At that point, the surgeon would send her a report letting her know what he found when he removed they thyroid so we'd have to know if I'd need to do radioactive iodine treatments or not. If I do, I will be radioactive for awhile and not be allowed to be around people. We would, at this time begin figuring out the dosage for my hormone replacement medication... it will take me some time to get this right. Once I get it right, I will come back in 6 months to be rechecked for cancer markers. Then, after that only return once a year.
I asked her about the lump on my back. I said it wasn't a concern before but it had never been checked out and now that I had a form of cancer, wondered if it should be a concern. She immediately wanted to feel it. Felt it and said, "I am 99% sure that is just fatty tissue(lipoma, already diagnosed), but it's big enough that you should definitely get that removed. Especially when you loose more weight, it will be more noticeable." At this point, I had my shirt pulled up and she was looking at my skin... "Oh..." There was a tiny hint of disgust in her voice, the first time she stopped talking to me in the, I-don't-want-you-to-burst-into-tears tone that she had been using... "and look at all those stretch marks from your weight-loss! When you get that tumor out, you should take care of those and all of that extra skin... but after you lose the 40 more lbs." I felt like this was good place to ask her about losing weight or gaining weight in this process, as that was one of my questions. What should I expect? "To gain some weight. But with the anxiety, you might not be hungry, and with the surgery, you might only want to drink right afterwards, so you might lose some weight, then, so it might even out until your pills get to the right dosage. Then your metabolism will kick in and you will be the right weight." BUT I've never been the right weight with just counting on metabolism... never! Ugh.
Now, she offered to bring Emily in, but at that point, we were done. She said she could go over it all again, but I felt like that would be a waste of mine and Emily's time. She then weighed me and got my height... wait... those are things we do in private, right?
I thanked her and exited the room. Asked the receptionist if I needed to check out... he gave me the "knowing" (almost saying, "you poor thing") shake of the head and said, "No, you are set. Do you know when to come back? 1 week after your surgery right? And you have the name of the surgeon?" I smiled and nodded and thanked him. He was very nice... they are all very nice. But I'm not fragile and not going to break, clearly you felt comfortable enough to recommend plastic surgery!
The experience was... fine. Nothing to blog about for hours and hours... oh, wait... But, I could see myself using the office, if I needed to, on a full time basis... just because the people were so nice and the doctor really was very caring. I am interested to see what tomorrow brings with Dr. V.
Oh, and I called this afternoon and made an appointment with the surgeon I want to use, Dr. P. He can see me on August 29. That's the consultation, not the surgery. My husband wanted to know if I would be okay having this hang over my head for that long. I told him I was fine using it as an excuse for the next 3+ months... "I didn't do the laundry today... because I have cancer." "I couldn't make dinner tonight... because I have cancer." He told me I have never needed an excuse before... we're both SOOO hilarious.
BUT, just before leaving my house, I got a call from Chad at Dr. V's office. They can see me tomorrow!! I'm super excited!! I'm counting this as one more miracle to add to the list!
Her staff was nice and friendly. Everyone greeted me like I was someone they had to be careful with. Speaking gently, quietly, calm tones. Nodding "knowingly" when I spoke. It was like no one wanted upset me. I think they expected me to get upset at some point. I have to admit, it It was a little strange filling out the paperwork.
"What brings you into our office today?" _____Thyroid Cancer____
and
Personal Medical History: (check all that apply)
_ ✔_ Cancer
After filling everything out, they took me back to the exam room. I took Emily with me to be a 2nd set of ears because my husband was out of town. Then, the doctor asked her to wait in the waiting room and that we were going to talk first and said she would come get her in a minute. I was disappointed.
The doctor then asked me when my last physical was. Wanted to know how often I see the doctor. When I told her that I see him monthly for my weight-loss and that I had lost 80 lbs, she thought I said 30 lbs. I happily corrected her, but then told her that I have about 40 more to go. She asked me about medications (I just filled all that out in the chart, do we have to go over it again, there are so many!) She asked if I had a lot of dental work as a child or any other exposure to radiation when I was young. She wanted to know about my c-sections, etc. Then, she asked how it was we came to do an ultrasound of my thyroid. So, far, all of this was stuff Emily knew, more or less. Then, she began to explain how I got cancer... not why... no one knows why... she even said that, she said, "you had no risk factors for it." She said that some people just get nodules on their thyroid and sometimes, those nodules just turn out to be cancerous. She explained that this cancer is extremely treatable. She spoke calmly and quietly, she didn't want me to get upset. I'm sure she kept expecting me to fall apart any second, I know she was trying to reassure me... "If I were to put you in a room, with a list of all the cancers in the world and tell you that you HAD to have one, THIS is the one you'd pick." I tried not to cringe out loud... "BUT, you didn't choose this, it was thrown on you. Now, we're going to take care of it." Okay, that was better, I guess...
I wondered if this is when we were going to call Emily in... nope! She then began going over HOW we treat it. Surgery. She then continued, in her most reassuring voice, "I want you to know that you are going to be okay and this is not an emergency." She would give some names, if I needed them, I would see a surgeon, he'd go over risks with me, set up the surgery date. Once I had a date, I'd call her office, make an appointment for 1 week afterwards. At that point, the surgeon would send her a report letting her know what he found when he removed they thyroid so we'd have to know if I'd need to do radioactive iodine treatments or not. If I do, I will be radioactive for awhile and not be allowed to be around people. We would, at this time begin figuring out the dosage for my hormone replacement medication... it will take me some time to get this right. Once I get it right, I will come back in 6 months to be rechecked for cancer markers. Then, after that only return once a year.
I asked her about the lump on my back. I said it wasn't a concern before but it had never been checked out and now that I had a form of cancer, wondered if it should be a concern. She immediately wanted to feel it. Felt it and said, "I am 99% sure that is just fatty tissue(lipoma, already diagnosed), but it's big enough that you should definitely get that removed. Especially when you loose more weight, it will be more noticeable." At this point, I had my shirt pulled up and she was looking at my skin... "Oh..." There was a tiny hint of disgust in her voice, the first time she stopped talking to me in the, I-don't-want-you-to-burst-into-tears tone that she had been using... "and look at all those stretch marks from your weight-loss! When you get that tumor out, you should take care of those and all of that extra skin... but after you lose the 40 more lbs." I felt like this was good place to ask her about losing weight or gaining weight in this process, as that was one of my questions. What should I expect? "To gain some weight. But with the anxiety, you might not be hungry, and with the surgery, you might only want to drink right afterwards, so you might lose some weight, then, so it might even out until your pills get to the right dosage. Then your metabolism will kick in and you will be the right weight." BUT I've never been the right weight with just counting on metabolism... never! Ugh.
Now, she offered to bring Emily in, but at that point, we were done. She said she could go over it all again, but I felt like that would be a waste of mine and Emily's time. She then weighed me and got my height... wait... those are things we do in private, right?
I thanked her and exited the room. Asked the receptionist if I needed to check out... he gave me the "knowing" (almost saying, "you poor thing") shake of the head and said, "No, you are set. Do you know when to come back? 1 week after your surgery right? And you have the name of the surgeon?" I smiled and nodded and thanked him. He was very nice... they are all very nice. But I'm not fragile and not going to break, clearly you felt comfortable enough to recommend plastic surgery!
The experience was... fine. Nothing to blog about for hours and hours... oh, wait... But, I could see myself using the office, if I needed to, on a full time basis... just because the people were so nice and the doctor really was very caring. I am interested to see what tomorrow brings with Dr. V.
Oh, and I called this afternoon and made an appointment with the surgeon I want to use, Dr. P. He can see me on August 29. That's the consultation, not the surgery. My husband wanted to know if I would be okay having this hang over my head for that long. I told him I was fine using it as an excuse for the next 3+ months... "I didn't do the laundry today... because I have cancer." "I couldn't make dinner tonight... because I have cancer." He told me I have never needed an excuse before... we're both SOOO hilarious.
Sunday, May 14, 2017
What are the chances?
Late Thursday night, I sent an email out to all of the adults in our family, letting them know about my diagnosis. I felt like it was time. At that point, I wasn't sure exactly when I'd get in to see the doctor or get more information, so I didn't feel like there was a reason to hold off for any specific amount of time.
I decided it was best to try out 2 different Endocrinologists because this will be a long term relationship. So, Friday morning, I called the doctor that my friend gave me the night before. I started the discussion differently because I now knew that need to know why you are calling... they don't ALWAYS ask...
"Um, I don't know where to start... I just found out that I have thyroid cancer this week and I know I need to see an endocrinologist and Dr. V was highly recommended by a friend."
"Oh, honey, don't you worry about a thing, we will take good care of you! Let me get your name so I can get you pulled up in my system..." (they happen to be part of the same network as the very FIRST doctor I called and I was already in their system).
"Okay, let me see here... oh, honey, someone must be looking out for you! We didn't have anything available until the very end of May but here are 2 openings on Monday, May 22! Do you want 8:45 or 9:45?"
I took the 9:45, just so I'd have time to get the kids off to school and give time for traffic to clear, a bit. I hung up the phone feeling like I love that office the best already... I had a confirmed appointment, sure it was in a week, but it was confirmed!
20 minutes later, the phone rang...
"Hi, this is Chad. I'm the nurse at Dr. V's office. I understand you talked to _____ and made an appointment for Monday, May 22. We'd really like to see you sooner than that. Would you be available to come in this coming Monday at 9am, instead?"
Seriously?? Who are these people? I really love them. He asked for my paperwork, which I happened to have all in an email from my own doc's office, for my own records. He gave me his email address and I forwarded the email to him. We were all set. See you on Monday.
About 2 hours later, the phone rang.
"Hi, this is _____ from Dr. D's office (the office I had called the day before). I was able to move some people around and I have you all scheduled for Monday at 9:30am."
Ugh. Seriously? What are the chances? 2 doctors both totally booked for the week, both able to "fit me in" at exactly the same time on the same day. I sat there saying the all intelligent, "uh, uh, uh... okay." I kept the appointment. Totally not sure what to do. Wondering if there was anyway to be at 2 places at once, but knowing it simply wasn't possible.
Deep breath. Texted my husband. He told me to call the other place. Deep breath. I emailed the nurse back, explaining that an unexpected appointment had come up and I didn't know what to do. No response. Deep Breath. Texted my husband. He told me to call the other place. Deep breath. I called them and asked if my original May 22 appointment was still available, explaining that an appointment I had been waiting for came up and I didn't know it was going to be at that exact time and that it couldn't be changed. Sigh. Yes, the appointment was available, they moved me back. We were all set. I emailed Chad, the nurse again. I told him about the change, told him I was sorry, and that if any other openings came up sooner, to let me know and that I would make it a priority, no matter what!!
Deep breath.
Lots more Googling this day. Found the Thyroid Surgeon I wanted to use. He has a 3 month wait list. I called to make an appointment, leave a message, we will call you back - same business day... um, no, you won't, because I waited all day. Still waiting... I bet you're going to call on Monday between 9-10, since that is the only time any specialist wants to talk to me.
Right?
Deep breath.
I decided it was best to try out 2 different Endocrinologists because this will be a long term relationship. So, Friday morning, I called the doctor that my friend gave me the night before. I started the discussion differently because I now knew that need to know why you are calling... they don't ALWAYS ask...
"Um, I don't know where to start... I just found out that I have thyroid cancer this week and I know I need to see an endocrinologist and Dr. V was highly recommended by a friend."
"Oh, honey, don't you worry about a thing, we will take good care of you! Let me get your name so I can get you pulled up in my system..." (they happen to be part of the same network as the very FIRST doctor I called and I was already in their system).
"Okay, let me see here... oh, honey, someone must be looking out for you! We didn't have anything available until the very end of May but here are 2 openings on Monday, May 22! Do you want 8:45 or 9:45?"
I took the 9:45, just so I'd have time to get the kids off to school and give time for traffic to clear, a bit. I hung up the phone feeling like I love that office the best already... I had a confirmed appointment, sure it was in a week, but it was confirmed!
20 minutes later, the phone rang...
"Hi, this is Chad. I'm the nurse at Dr. V's office. I understand you talked to _____ and made an appointment for Monday, May 22. We'd really like to see you sooner than that. Would you be available to come in this coming Monday at 9am, instead?"
Seriously?? Who are these people? I really love them. He asked for my paperwork, which I happened to have all in an email from my own doc's office, for my own records. He gave me his email address and I forwarded the email to him. We were all set. See you on Monday.
About 2 hours later, the phone rang.
"Hi, this is _____ from Dr. D's office (the office I had called the day before). I was able to move some people around and I have you all scheduled for Monday at 9:30am."
Ugh. Seriously? What are the chances? 2 doctors both totally booked for the week, both able to "fit me in" at exactly the same time on the same day. I sat there saying the all intelligent, "uh, uh, uh... okay." I kept the appointment. Totally not sure what to do. Wondering if there was anyway to be at 2 places at once, but knowing it simply wasn't possible.
Deep breath. Texted my husband. He told me to call the other place. Deep breath. I emailed the nurse back, explaining that an unexpected appointment had come up and I didn't know what to do. No response. Deep Breath. Texted my husband. He told me to call the other place. Deep breath. I called them and asked if my original May 22 appointment was still available, explaining that an appointment I had been waiting for came up and I didn't know it was going to be at that exact time and that it couldn't be changed. Sigh. Yes, the appointment was available, they moved me back. We were all set. I emailed Chad, the nurse again. I told him about the change, told him I was sorry, and that if any other openings came up sooner, to let me know and that I would make it a priority, no matter what!!
Deep breath.
Lots more Googling this day. Found the Thyroid Surgeon I wanted to use. He has a 3 month wait list. I called to make an appointment, leave a message, we will call you back - same business day... um, no, you won't, because I waited all day. Still waiting... I bet you're going to call on Monday between 9-10, since that is the only time any specialist wants to talk to me.
Right?
Deep breath.
May 11: The weather outside was exactly what I was feeling inside
Cold. Rainy. Dark.
All day. I woke up, got ready for a meeting for PTA, and tried calling that "wonderful doctor" I had researched. He sounded so good, and one of his offices was near my husband's office, so that would be so convenient since he wanted to go with me to some of my appointments.
"Hi, I'd like to make an appointment with Dr. G"
"Are you a patient here?"
"No, I'd be a new patient."
"Okay, let me get your information..."
I gave some information, since they are part of a network that I've been to before, they had all of it in the computer, already.
"Alright, she doesn't have any appointments until August."
The doctor I wanted to see was male, so I thought maybe she hadn't heard who I wanted an appointment with.
"August? For Dr. G?"
"Yes, both doctors are booked until August. Is that okay."
"Uh..." Stunned silence... a bit awkward, stunned silence...
"We can make the appointment for August and call you if there is a cancellation."
"Um, no. Thank you. I don't wish to make an appointment for August."
"Do you want me to refer you to another doctor, we have one in Leesburg that isn't as busy and can probably get you in sooner." She was condescending in her voice... making it sound like this other doctor wasn't nearly as good as her doctor.
"No, thank you. I will keep looking on my own. Good bye."
Her attitude + my disappointment at not getting to see this doctor that was supposed to be SOOO GOOD = me being shaken to the point of not being able to think straight. I quickly emailed my doctor's office, asking for a name or 2, threw dinner in the crockpot and left for my meeting, now 10 minutes late. GRRR...
It was pouring rain. So cold. I didn't want to be out of my house.
My meeting got over, I got home, got a text from a friend, who somehow knew I needed one, right then. I ended up telling her everything... about my diagnosis, the doctor not being available, how I suddenly didn't even feel like talking to another human being on the phone for fear that I would be told no again. She texted back...
"Give me a list of offices, I will call until I find one that can take you, then all you have to do is call and make the appointment."
Of course, I didn't take her up on that, but how cool of a friend is that? Then I got another text from her...
"I'm in Purcellville, I'm bringing you lunch. I'll be there soon."
I was able to take courage, I called the doc's office that my doctor recommended. I had this experience:
"Are you a patient?" (Uh, oh! Here we go again...)
"No, I'd be a new patient."
Slight pause, "Is this an emergency?"
"Well, I just found out that I have thyroid cancer last night."
"We make sure to get you in next week, then. Just make sure you bring your lab work with you or have your doctor's office fax it to us. Do you have something to write with and I will give you that number. It's _____. Okay, let me pass you over to ____ and she will get you all set up. Have a great day!"
Then I spoke to the lady and she took my basic information and then said, "I am getting ready to make all of my reminder calls for next week's appointments. I have you at the top of my waitlist. If anyone cancels, I will put your name in that spot and call you. I will also, as I make those calls, try moving people around and see if we can fit you in. I promise you, you will get in this next week. I will make sure of it."
What a difference. It was still dark and rainy outside and a bit in my inner-self, but I felt that little ray of sunshine. There was hope!
Then Emily showed up with yummy food and a much needed hug. Totally turned my day around.
That night, I ended up spilling the beans to another friend, as I felt like I should ask her if she had a recommendation for an endocrinologist. She had a name... and highly recommended her... I would call in the morning.
Things really weren't that bad, after all.
All day. I woke up, got ready for a meeting for PTA, and tried calling that "wonderful doctor" I had researched. He sounded so good, and one of his offices was near my husband's office, so that would be so convenient since he wanted to go with me to some of my appointments.
"Hi, I'd like to make an appointment with Dr. G"
"Are you a patient here?"
"No, I'd be a new patient."
"Okay, let me get your information..."
I gave some information, since they are part of a network that I've been to before, they had all of it in the computer, already.
"Alright, she doesn't have any appointments until August."
The doctor I wanted to see was male, so I thought maybe she hadn't heard who I wanted an appointment with.
"August? For Dr. G?"
"Yes, both doctors are booked until August. Is that okay."
"Uh..." Stunned silence... a bit awkward, stunned silence...
"We can make the appointment for August and call you if there is a cancellation."
"Um, no. Thank you. I don't wish to make an appointment for August."
"Do you want me to refer you to another doctor, we have one in Leesburg that isn't as busy and can probably get you in sooner." She was condescending in her voice... making it sound like this other doctor wasn't nearly as good as her doctor.
"No, thank you. I will keep looking on my own. Good bye."
Her attitude + my disappointment at not getting to see this doctor that was supposed to be SOOO GOOD = me being shaken to the point of not being able to think straight. I quickly emailed my doctor's office, asking for a name or 2, threw dinner in the crockpot and left for my meeting, now 10 minutes late. GRRR...
It was pouring rain. So cold. I didn't want to be out of my house.
My meeting got over, I got home, got a text from a friend, who somehow knew I needed one, right then. I ended up telling her everything... about my diagnosis, the doctor not being available, how I suddenly didn't even feel like talking to another human being on the phone for fear that I would be told no again. She texted back...
"Give me a list of offices, I will call until I find one that can take you, then all you have to do is call and make the appointment."
Of course, I didn't take her up on that, but how cool of a friend is that? Then I got another text from her...
"I'm in Purcellville, I'm bringing you lunch. I'll be there soon."
I was able to take courage, I called the doc's office that my doctor recommended. I had this experience:
"Are you a patient?" (Uh, oh! Here we go again...)
"No, I'd be a new patient."
Slight pause, "Is this an emergency?"
"Well, I just found out that I have thyroid cancer last night."
"We make sure to get you in next week, then. Just make sure you bring your lab work with you or have your doctor's office fax it to us. Do you have something to write with and I will give you that number. It's _____. Okay, let me pass you over to ____ and she will get you all set up. Have a great day!"
Then I spoke to the lady and she took my basic information and then said, "I am getting ready to make all of my reminder calls for next week's appointments. I have you at the top of my waitlist. If anyone cancels, I will put your name in that spot and call you. I will also, as I make those calls, try moving people around and see if we can fit you in. I promise you, you will get in this next week. I will make sure of it."
What a difference. It was still dark and rainy outside and a bit in my inner-self, but I felt that little ray of sunshine. There was hope!
Then Emily showed up with yummy food and a much needed hug. Totally turned my day around.
That night, I ended up spilling the beans to another friend, as I felt like I should ask her if she had a recommendation for an endocrinologist. She had a name... and highly recommended her... I would call in the morning.
Things really weren't that bad, after all.
May 10: Part 2 - I really like breaking things
I hung up the phone and my oldest son, standing there next to me, looked at me...
"What was that about?"
Just then his brother walked through the kitchen and his little sister came running into the house.
Trying to sound normal and cheerful, I said, "We're running late, I'll tell you all about it in the car."
In the car, I explained what I had. To be honest, I can't remember for sure if the doctor told me that night if I had Papillary Thyroid Cancer, or if I found out the next day when I got the report, I'm pretty sure he told me on the phone, but I can't remember when it fit into the conversation. I told my son, I explained that it was very treatable and nothing to worry about. That he could come to me with any questions he had. I also asked him to please not say anything to friends or his siblings just yet... that I would talk to them when I felt they were ready and it was the right time... also, when I had more information about my treatment. I dropped him off at taekwondo, he seemed to be deep in thought.
I then called my husband. He was just about home from work, we'd get home about the same time. When I got home, he wanted to talk. He wanted to talk about treatment, specialists, surgery, how and when we'd communicate with the children and extended family, what the timeline was like, etc. I was a little annoyed... I had been trying to share this information with him for the last 2 weeks, as part of my "Just in case", "Be Prepared", "Emergency Preparedness" (whatever we are calling it) plan... he didn't want to hear any of it then. Now, he wanted 2 weeks worth of information and research in 10 minutes? Okay, I wasn't REALLY annoyed with him. I actually felt quite loved and supported. I understood that he didn't like the idea of thinking about the "what if I'm sick," but only wanted to deal with it when it was a reality. I, on the other hand, had a much better time dealing with the possibility of it, than I did the reality. I could research something that wasn't real, yet, but once it was real, my emotions took over... as I would see the next day.
I ran back out to get my oldest and he ran out to the car to get me, motioning for me to come in to the building. I came in and they had something special for the mothers. They had decorated special wood boards... then taught us all how to do a "palm strike" so we could break the board. I had to go first... when I asked why, the instructor said it was because my son was a black belt and I, therefor, had the most years of watching him do it... He said, "I should make you do something more complicated, like a back kick." To which I replied, "or like a Tornado Kick?" They all laughed (those are hard to do right, and look very impressive). I did the palm strike and broke the board... I sort of wanted to do more...
We will attribute it to the stress of the news I received that night, right?
"Well, my friend, it looks like you have a bit of..."
One week. The nurse told me I should have results sent to my doctor's office one week after the biopsy. "We send them on as soon as we get them, you won't have to wait." In preparation, I Googled a few more things, like, "I have thyroid cancer, now what?" That didn't bring up any results, really. So, I tried a few other things, and eventually, on Tuesday morning, May 9, almost one week after my biopsy, I found some information on what kind of specialist to see, an Endocrinologist... not an Oncologist. Then, on May 10, suddenly, I came across the name of a really great one in my area. That morning, I was in the car on the way to my daughter's field trip, and I called my doctor's office, asking the doctor to please call me when he got the results from the radiologist.
6:00pm, it's time to take my son to taekwondo, the phone rings (why does he always call right when I'm running out the door). I answer, my voice was a little shaky. The doctor said he had not received my results, yet. I told him that the radiologist told me that they would send the biopsy report over on Wednesday. He said, "Okay, let me check this other folder here, just in case..." A little pause, about 30 seconds is all, "okay, my friend, it looks like you have a bit of cancer."
Wait... What? You're going to say it like that?
I was calm. I had my son in the kitchen staring at me, jingling the keys in hand, telling me it was time to leave. I took a deep breath...
"Okay, so I need to see an Endocrinologist, right?"
"Yes, that's right? Do you have one?"
"No, but I have been researching, just in case." My mind went blank... "I can't remember his name, but he has offices in Leesburg and Ashburn."
"You did the right thing, researching. Was it Dr. G?"
"Yes! That's it!"
"He is very good. You should also try to find a Thyroid Surgeon. That is how we will get rid of this thing, we will just take it all out and be done with it. Okay?"
"Okay, thank you."
We got off the phone and that was the end of it. I officially had a diagnosis. I have cancer.
6:00pm, it's time to take my son to taekwondo, the phone rings (why does he always call right when I'm running out the door). I answer, my voice was a little shaky. The doctor said he had not received my results, yet. I told him that the radiologist told me that they would send the biopsy report over on Wednesday. He said, "Okay, let me check this other folder here, just in case..." A little pause, about 30 seconds is all, "okay, my friend, it looks like you have a bit of cancer."
Wait... What? You're going to say it like that?
I was calm. I had my son in the kitchen staring at me, jingling the keys in hand, telling me it was time to leave. I took a deep breath...
"Okay, so I need to see an Endocrinologist, right?"
"Yes, that's right? Do you have one?"
"No, but I have been researching, just in case." My mind went blank... "I can't remember his name, but he has offices in Leesburg and Ashburn."
"You did the right thing, researching. Was it Dr. G?"
"Yes! That's it!"
"He is very good. You should also try to find a Thyroid Surgeon. That is how we will get rid of this thing, we will just take it all out and be done with it. Okay?"
"Okay, thank you."
We got off the phone and that was the end of it. I officially had a diagnosis. I have cancer.
April 30: That's not what I thought I would pray for...
So, this isn't exactly in chronological order, but I have been thinking about it a lot in the last few days. As I was waiting to have my biopsy, we had what we call at church, "Fast Sunday." It's one Sunday a month that we set aside to hold a "fast" (not eating or drinking). We can either use these days to simply increase our worship by showing a little extra devotion OR use it as a day to ask for a special blessing in a time of need through our little sacrifice. As this particular Fast Sunday came just a few days before my scheduled biopsy, I knelt down to pray to ask for a special blessing. As I began to pray, I found that I could not bring myself to ask our Heavenly Father to "please bless me to be cancer-free." I could not say it. I knew I wasn't supposed to say it, I could feel it. Instead, I said the words, "please bless me to have peace, no matter what comes from this."
Even in the moments I felt the most nervous about the biopsy and it's results, the fear was fleeting. Peace has prevailed. I know that my prayer was (and continues to be) answered.
To see all the ways this particular prayer has been answered throughout my journey, use the labels in my blog of "peace" and "blessings."
Here is some more information on Fasting: http://www.mormonnewsroom.org/article/fasting
Even in the moments I felt the most nervous about the biopsy and it's results, the fear was fleeting. Peace has prevailed. I know that my prayer was (and continues to be) answered.
To see all the ways this particular prayer has been answered throughout my journey, use the labels in my blog of "peace" and "blessings."
Here is some more information on Fasting: http://www.mormonnewsroom.org/article/fasting
I have my medical degree from Google University, Part 1: Undergraduate Research on Radiological Report Terminology
So, what would you do with a report in your hand from a radiologist that had terms like, "heterogeneous echotexture" and "normal vascularity"? The curious side of me wants to know what everything means. I want to understand the report. So... I did what anyone would do (okay, maybe not anyone) I Googled ALL of the terms on the report until I had translated it completely into plain English.
Without going through all of the specifics, here is a summary of some of it.
The lump they originally scanned is a lymph node, measuring 1.65 X .6 X 1.2 cm It had no indicators of any abnormal tissue or cells. They recommend rechecking it in 2 months to be sure.
My 2 major lymph nodes were also scanned both were found to be normal, no abnormal tissue, although one is significantly larger than the other.
3 nodules (lesions/nodes) were found.
1 on the lower right side of my thyroid (1.3 X .9 X 1.0cm) - We'll call this "A"
1 on the midsection of my left side of my thyroid (2.4 X 1.4 X 1.7cm) We'll call this "B"
1 on the lower left side of my thyroid (1.9 X 1.9 X1.7cm) - We'll call this "C"
There were other terms that I saw that described the nodules. These terms are ones that both gave me hope (in some circumstances) but totally made me see why I needed the biopsy. Below are the definitions, as I understand them - no, they are not totally scientific.
Circumscribed: You can see a clear border. This is not always the case with malignant nodules, but usually the case with benign ones. ALL 3 of my nodules were circumscribed... HOPE!!
Hypoechoic: This tissue does not bounce back the sound waves as readily as the surrounding tissue.
According to one website, having this feature increases the risk of malignancy by 26%.
Calcifications: Having hardened deposits within the nodule. Having this feature (specifically mircocalcifications OR punctate calcifications) increases the risk of malignancy by 75%.
Vascularity: Having blood flow run through the nodule, not around it. Most benign nodules redirect the blood flow, malignant ones incorporate it. So, having the absence of this increases my chance of it being benign. This in, conjunction with something else, is a good predictor of malignancy. It is found on about 50% of malignant tumors.
Size and Shape: Most benign tumors are wider than tall, shaped more like pancakes, sort of. Mine are all nearing rounded. Anything above 2cm, or around there, really requires a biopsy.
So... having 1 of these things, would make the doctor think carefully about his recommendations. Having 2 or more would mean he definitely needed to recommend the biopsy.
Nodule A: Hypoechoic, nearing rounded, but not quite
Nodule B: Vascular, Hypoechoic, over 2cm.
Nodule C: Punctate calcifications, almost perfect sphere
So, there you have it. My undergraduate research report on radiological terminology.
Based on my understanding of the ultrasound report, I would have recommended a biopsy, too.
Without going through all of the specifics, here is a summary of some of it.
The lump they originally scanned is a lymph node, measuring 1.65 X .6 X 1.2 cm It had no indicators of any abnormal tissue or cells. They recommend rechecking it in 2 months to be sure.
My 2 major lymph nodes were also scanned both were found to be normal, no abnormal tissue, although one is significantly larger than the other.
3 nodules (lesions/nodes) were found.
1 on the lower right side of my thyroid (1.3 X .9 X 1.0cm) - We'll call this "A"
1 on the midsection of my left side of my thyroid (2.4 X 1.4 X 1.7cm) We'll call this "B"
1 on the lower left side of my thyroid (1.9 X 1.9 X1.7cm) - We'll call this "C"
There were other terms that I saw that described the nodules. These terms are ones that both gave me hope (in some circumstances) but totally made me see why I needed the biopsy. Below are the definitions, as I understand them - no, they are not totally scientific.
Circumscribed: You can see a clear border. This is not always the case with malignant nodules, but usually the case with benign ones. ALL 3 of my nodules were circumscribed... HOPE!!
Hypoechoic: This tissue does not bounce back the sound waves as readily as the surrounding tissue.
According to one website, having this feature increases the risk of malignancy by 26%.
Calcifications: Having hardened deposits within the nodule. Having this feature (specifically mircocalcifications OR punctate calcifications) increases the risk of malignancy by 75%.
Vascularity: Having blood flow run through the nodule, not around it. Most benign nodules redirect the blood flow, malignant ones incorporate it. So, having the absence of this increases my chance of it being benign. This in, conjunction with something else, is a good predictor of malignancy. It is found on about 50% of malignant tumors.
Size and Shape: Most benign tumors are wider than tall, shaped more like pancakes, sort of. Mine are all nearing rounded. Anything above 2cm, or around there, really requires a biopsy.
So... having 1 of these things, would make the doctor think carefully about his recommendations. Having 2 or more would mean he definitely needed to recommend the biopsy.
Nodule A: Hypoechoic, nearing rounded, but not quite
Nodule B: Vascular, Hypoechoic, over 2cm.
Nodule C: Punctate calcifications, almost perfect sphere
So, there you have it. My undergraduate research report on radiological terminology.
Based on my understanding of the ultrasound report, I would have recommended a biopsy, too.
Thursday, May 11, 2017
Background Post 2: Bumps, Bruises, and Vampire bites
My April appointment came around and since I had not lost any weight that month, I wasn't sure I wanted to face the doctor. Was it birthday cake and Easter? Was it lack of motivation? Or had my body just stopped? It didn't matter, I had to go see him and tell him about birthdays and Easter... And the lump on my throat.
After asking about the weight loss, I told him it wasn't great, but that I had a lump I wanted to discuss with him and that it was on my neck. He looked up at me, no hesitation, "I will send you in to get a soft tissue ultrasound of your neck to get it checked out, it's probably just a benign cyst from your thyroid, they are very common, but we should make sure." Later during the exam, he felt the lump and admitted it was a little high to be my thyroid but all the more reason to get it scanned and checked out.
"When was your last mammogram?" My answer of 12 years ago was not satisfactory to him, but in fairness, I just barely turned 40 and they haven't been recommended until now. So I walked out of his office with an order for a mammogram and a soft tissue neck ultrasound. I researched my options of locations and that afternoon called to make the appointment. I thought it would take weeks to schedule both together. I said, "I have 2 procedures I need, I'd like to do both. One is a mammogram, I think it will be harder to schedule." The lady asked what the other was and I told her, her reply was, "Oh, do you you have a history of thyroid cancer?" I was caught off guard. I didn't say was getting my thyroid scanned. I was getting my neck scanned. Yes, I knew why we were getting this bump checked out, what it was we were checking for, but to hear someone say the word "cancer" threw me, just a bit. I told her that I had lump we were getting checked out and that was it.
On Thursday, April 27, I went in and had both scans done. I had my mammogram first. The technician didn't say anything about what she saw, just that it would take 4-5 days to get the report to the doctor. Then I had the ultrasound done. I didn't expect to get any information from the tech. I walked into the room and she had a question for me... "Are you expecting to have an ultrasound done of your neck tissue or your thyroid?" I smiled. I knew that the scheduler had made note of the thyroid but that my original order from the doc only said neck. I explained that I had a lump, we wanted to check it out, but that the scheduler assumed I needed my thyroid done, too. The tech said, "well, let's take a look at your lump... and then I will scan your thyroid." She didn't NEED to scan the thyroid (or my lymph nodes, which I found out later that she did), but she felt like she should. She started the scan and within a few minutes said, "that bump is just a lymph node, they can stay swollen for up to 2 weeks fighting infections." We were going on 5 weeks, but she didn't sound worried, so I wasn't worried. She then scanned my thyroid. She measured and took pictures of every aspect of thyroid. I knew there was something interesting there... It took forever! She got finished and said, "OK, so you have what we call a nodular thyroid. It is common. We will get the report typed up and sent to your doctor tomorrow or Monday at the latest. I knew this meant 1 of 2 things... Either the ultrasound tech had less patients than the mammogram tech and can promise reports faster OR there was something wrong and my doctor needed to know ASAP. Of course I went home and Googled "thyroid nodules." Phew! Estimated that over 50% of the population can develop them in their lifetime and that 90-95% of them are benign. My odds of this being common and probably nothing are very good!
The next week, I contacted the doctor's office to check for results. He would have to call me back later, which he did. Blood work from week ago was fine, mammogram was fine, ultrasound showed nodules that the radiologist recommended we get biopsied. Oh. Hmm... Okay...
I immediately wondered what they saw. How routine is it to get a biopsy done on these? My doc called me at the worst possible time of day. I couldn't ask questions, and he was leaving the next day to go out of town. So, we made arrangements for me to get the biopsy order and I got off the phone. Back to the chaos I was in the middle of at home - packing up dinner for another family, getting my son ready for taekwondo, arranging the pick up of my other son from the tutor so he could go to soccer practice. My head was spinning, but no time to process any of this.
The next day, I called to schedule the biopsy but they couldn't do that scheduling then, it was a specialized procedure, so they would need to call me back within 24 hours. I waited nearly 24 hours, feeling like I didn't dare leave the house, even to go get the mail or I would miss the call. I felt as if I was being held hostage by this elusive phone call. So, with nothing else to do, I made cookies, lots of cookies. I finally called them back at hour 23 and they pushed my call through to the scheduler, apologizing for not calling me back. I set my appointment for the next Wednesday, May 3.
The next few days I went through various emotions. Feeling like this is no big deal because, thyroid cancer is the easiest to treat, has a high success rate, to being totally terrified at the possibility of being told that I have cancer, any form of cancer, treatable or not.
At the biopsy, I had my first ever vasovagal response, at least that I am aware of and that I knew what it was. It felt familiar, though, so it's possible that I have had it before, I think during my C-sections, but because of that situation, it was harder to recognize. I told them how I felt (cold sweats and nauseous) and they took care of me, telling me it was normal. I laughed a little and told them I knew what it was because my daughter does that, but it was the first time for me. Once I had stabilized we continued with the procedure. After the biopsy, I asked for a copy of my original scan, because I had never seen it. They were very accommodating. My neck looked like I had been bit by a snake, twice. Over the next few days, as my neck began to show increased bruising, I began to Google the terms on my original report. I now see why I needed a biopsy. But that is a post for another day. For now... I was googling, waiting, and bruised. I said to my son, "it looks like I got bit by a..." And before I could say snake, he said, "vampire." Yes, that, too. I had vampire bites. I should have taken a picture.
Background Post 1: In the Beginning... I was just a little pre diabetic
For years, I was struggling with dizziness, severe headaches, exhaustion, muscle cramps, and obesity... To name a few things. After several months of it getting worse and worse, I finally went to the doctor in March of 2015. I was put on blood pressure medication and had blood work done. In May 2015, I was diagnosed with high cholesterol and as pre-diabetic. The doctor said, "you're not walking towards diabetes, you're running towards it." Something had to change. The doctor recommended that in addition to medication for the blood pressure and cholesterol, that my main focus should be on weight loss. I was 120lbs overweight so it would not be easy. His recommendations? Find whatever program worked for me that focused on high protein, low carbs (as this would help with the diabetes, too), and to keep my calorie count under 1200 per day. I researched programs, couldn't find one I liked, so I made my own and started on it. For the last 2 years I have been going in to his office monthly... Yes, monthly. That's a lot. The main reason for this is that he put me on a pill that is an appetite suppressant and because it is a controlled stimulant, by law, it requires an office visit to get the refill for the prescription. Most people are only on this medication for 3-6 months. I've been on it since August of 2015, it's May 2017, so it's been a long time. The good news is that I lost 81.8 lbs. The bad news? I hit that milestone 2 months ago and I have stalled out, in fact, I have been fluctuating between the same 3 lbs., going up and down for those 2 months. It's driving me crazy!
In all this time, my doctor has never asked me test my daily blood sugar. He has never asked me to address that issue. He has just said that my A1C levels have barely dropped, but they have gone down. I don't have the exact numbers in front of me, but if I remember correctly, the very first time, they were 6.1, then 5.9, then 5.9, and now are 5.8. Which, again, if I'm remembering correctly, is still in the pre-diabetic range.
As I started losing weight, I started noticing other things. The hard bump on my forehead... How long has that been there, my whole life? (Still haven't asked the doc about that one). The lump on my back, that on occasion bugged me, became more prominent, I could now feel that it ran along one of my ribs. I asked the doctor about it sometime last year. He felt my back and said, "oh, that's just a lipoma, it's benign." What? No scan, no biopsy? You can tell that by feeling it from the outside? I hoped he was right (still hope, actually).
On March 23, 2017, I had a regularly scheduled appointment with him. All looked good, I left his office. Soon after leaving, like within the next few hours, I discovered a lump on my neck. It is in the very center of my neck (not the sides), and is about in the area where your chin meets your neck. Having just seen the doctor that day, I decided I would keep an eye on it and ask him about it the next month... And of course, Google it. 😀
In all this time, my doctor has never asked me test my daily blood sugar. He has never asked me to address that issue. He has just said that my A1C levels have barely dropped, but they have gone down. I don't have the exact numbers in front of me, but if I remember correctly, the very first time, they were 6.1, then 5.9, then 5.9, and now are 5.8. Which, again, if I'm remembering correctly, is still in the pre-diabetic range.
As I started losing weight, I started noticing other things. The hard bump on my forehead... How long has that been there, my whole life? (Still haven't asked the doc about that one). The lump on my back, that on occasion bugged me, became more prominent, I could now feel that it ran along one of my ribs. I asked the doctor about it sometime last year. He felt my back and said, "oh, that's just a lipoma, it's benign." What? No scan, no biopsy? You can tell that by feeling it from the outside? I hoped he was right (still hope, actually).
On March 23, 2017, I had a regularly scheduled appointment with him. All looked good, I left his office. Soon after leaving, like within the next few hours, I discovered a lump on my neck. It is in the very center of my neck (not the sides), and is about in the area where your chin meets your neck. Having just seen the doctor that day, I decided I would keep an eye on it and ask him about it the next month... And of course, Google it. 😀
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