My story is posted on the right of my blog and I don't have too much to add to that, but I wanted to say WELCOME :)
My family is in town for the holidays and I am very thankful for that. We've been busy with family dinners, shopping, parties, and cookie decorating. Last night Jayden and my two month old nephew were wearing matching pajamas that my mom bought them. Adorable. I love seeing the boys together. My sister in law who lives on the other side of the country just got into town (my brother is flying in on Friday) and is coming over today to play with Jayden. I can't wait.
Tomorrow is the two year anniversary of my big surgery. During our adoption wait, I was diagnosed with endometrial cancer and had a radical hysterectomy. Even two years later, I still feel my scars every night before I fall asleep. This Christmas will be very different from the one two years ago. I have so much to be thankful for now. The anniversary of my surgery still holds a lot of emotion for me though.
This is probably too deep for a "Welcome To My Blog" ICLW post, huh? ;)
I look forward to meeting new people and visiting your blogs this week!!
Showing posts with label medical. Show all posts
Showing posts with label medical. Show all posts
Wednesday, December 21, 2011
Tuesday, September 20, 2011
I Love My Pediatrician
When choosing our pediatrician, I mostly based it on two things: A recommendation from a friend I really trust and their office hours.
I watch children during the day and for most of Jayden's first year, Adam and I shared only one working car. It was important to have an office with evening and weekend hours. All of Jayden's well visits have been at 5:30 on Thursdays, a day Adam gets out of work early. Adam has never missed an appointment, which has been so nice for both of us.
Jayden has only ever had one sick visit, but they got us in right away that morning (Adam used personal time and came with us) and we even had a follow up the next morning, which was a Saturday.
One time Jayden scratched his eye ball with his nail during a nap and someone called me back fairly quickly to talk about it and reassure me he was okay. (Which I needed because I was consulting Dr. Google and was convinced he was going blind with every second we waited.) I think it was a Saturday evening and our pediatrician called first thing Monday morning to check on us. I was so impressed by that. (By the way, by Monday it was completely gone! It healed so quick.)
She is a mother, which I feel like makes a big difference. Her son is actually only about two so she just went through all this stuff with her own child. And her son is also small for his age, which has helped tremendously with my worries about Jayden's size. She is very reassuring and shares stories about her son's weight and let's me know some kids are just small and it's okay. Someone has to be at the small end of the chart. She shares tips with me about how to get extra calories in him, but doesn't make a big deal out of it. She said as long as he is growing at a steady rate and not slipping down in percentile from where he used to be, he's okay. Plus, she always makes a big deal about how well he's doing with all his milestones and that it's a great sign for his overall health.
She is always honest and upfront with us about everything. If she sees anything she wants to keep an eye on, she always tells us about it. And she completely understands that I am the kind of person who wants to hear about all the worst case scenarios. For example- if the thing she is watching turns out to be something, what could be the cause and what's the worst thing that could happen. She always goes through it all with me.
She is especially patient and understanding about all my extra concerns that come from Jayden never having prenatal care and having some exposures/risks to worry about.
The biggest reason I love our pediatrician is that I never have to lie to her. I know so many people who lie to their pediatrician. Whether it be about how they feed their baby, sleep issues, whatever. I told myself early on that if I ever found myself feeling like I have to lie to her, I would switch doctors. There are way too many doctors out there to have one that's not a perfect fit for us. She "gets us" and our parenting choices. It's essential to me.
She is leaving to go on maternity leave really soon and I was so thankful that she gave us the date she would be back so we could schedule Jayden's 15 month well visit after she comes back!
I watch children during the day and for most of Jayden's first year, Adam and I shared only one working car. It was important to have an office with evening and weekend hours. All of Jayden's well visits have been at 5:30 on Thursdays, a day Adam gets out of work early. Adam has never missed an appointment, which has been so nice for both of us.
Jayden has only ever had one sick visit, but they got us in right away that morning (Adam used personal time and came with us) and we even had a follow up the next morning, which was a Saturday.
One time Jayden scratched his eye ball with his nail during a nap and someone called me back fairly quickly to talk about it and reassure me he was okay. (Which I needed because I was consulting Dr. Google and was convinced he was going blind with every second we waited.) I think it was a Saturday evening and our pediatrician called first thing Monday morning to check on us. I was so impressed by that. (By the way, by Monday it was completely gone! It healed so quick.)
She is a mother, which I feel like makes a big difference. Her son is actually only about two so she just went through all this stuff with her own child. And her son is also small for his age, which has helped tremendously with my worries about Jayden's size. She is very reassuring and shares stories about her son's weight and let's me know some kids are just small and it's okay. Someone has to be at the small end of the chart. She shares tips with me about how to get extra calories in him, but doesn't make a big deal out of it. She said as long as he is growing at a steady rate and not slipping down in percentile from where he used to be, he's okay. Plus, she always makes a big deal about how well he's doing with all his milestones and that it's a great sign for his overall health.
She is always honest and upfront with us about everything. If she sees anything she wants to keep an eye on, she always tells us about it. And she completely understands that I am the kind of person who wants to hear about all the worst case scenarios. For example- if the thing she is watching turns out to be something, what could be the cause and what's the worst thing that could happen. She always goes through it all with me.
She is especially patient and understanding about all my extra concerns that come from Jayden never having prenatal care and having some exposures/risks to worry about.
The biggest reason I love our pediatrician is that I never have to lie to her. I know so many people who lie to their pediatrician. Whether it be about how they feed their baby, sleep issues, whatever. I told myself early on that if I ever found myself feeling like I have to lie to her, I would switch doctors. There are way too many doctors out there to have one that's not a perfect fit for us. She "gets us" and our parenting choices. It's essential to me.
She is leaving to go on maternity leave really soon and I was so thankful that she gave us the date she would be back so we could schedule Jayden's 15 month well visit after she comes back!
Friday, August 5, 2011
Well, If My Chart Didn't Say "Crazy" Before, It Does Now
Confession: I have not been back to the gynocologist since my hysterectomy.
I went to my post-op oncology appointment, but that was it.
My gynocologist wrote me a prescription for a year of low dose hormones, but those ran out. And I knew I couldn't get more refills without an appointment (that was long overdue) but I just couldn't bring myself to make an appointment. Just picking up the phone to call filled me with anxiety. So, I put it off.
This afternoon I finally did it. I called for an appointment.
Out of nowhere tears started streaming down my face as I did it. I really wasn't expecting that.
They wanted to know why I was making the appointment and just talking about the hysterectomy stirred stuff up in me. They realized how long it had been and commented on that. I then started babbling on about anxiety and pregnant people sitting in the waiting room. (To a fellow infertile that makes sense. I'm not sure the person on the phone had any idea what I was talking about.)
I asked if I could bring my baby to the appointment because I didn't have anywhere else for him to go. I said he could just sit in his stroller. She asked how old he was and then said it's no problem. That was the end of the conversation.
I hung up and started bawling. There was just so much emotion stirred up in me.
A minute goes by and the phone rings. I saw it was the gynocologist office so I answered it despite my crying. It was the end of the day so I didn't want to risk not being able to call them back and find out what they wanted.
It was another woman this time. She said they wanted to get a little more information as to why I was making the appointment so they knew what kind of appointment to book me for.
But I quickly realized the real reason they were calling is because I freaked them out by saying I have a 10 month old baby. (Which, in hindsight, is a little funny.)
She said "We have no record of you having a baby."
Uh, yeah, I had a hysterectomy a year and a half ago so I obviously did not give birth to my 10 month old.
Meanwhile, by the way, I am full on crying through this whole conversation, so I felt like I had to address the obvious sobs.
I told her I have a lot of anxiety about this appointment. And going back into this office will bring up a lot of old feelings. I used to go there to get pregnant. Now I have no uterus.
She said something about how I am a mother now.
Which is totally valid and I understand her perspective. But, not having been through what I have, she can't fully understand why having a baby doesn't magically make all that pain go away.
Things moved very quickly from infertility patient to cancer diagnosis and radical hysterectomy.
I have not been back there since.
We were well into the adoption process at the time I was diagnosed, but again, that didn't make it any easier.
As I cried and talked about it a little more, she really got it and said it is understandable after everything I have been through.
She asked if I wanted a new doctor, which wasn't AT ALL what I wanted. My doctor was amazing with giving me my diagnosis and talking me through all the surgery decisions when my oncologist was a self absorbed asshat.
She asked if I wanted my doctor to call me before my appointment to check in, which was an amazing offer. I really appreciated that. When my doctor called me with me diagnosis, she actually gave me her cell phone number in case I needed her. She really went above and beyond.
The way this all hit me...just from one phone call to the office...I am worried about going to this appointment. It's going to be so hard.
I feel like I have some sort of infertility post traumatic stress.
I went to my post-op oncology appointment, but that was it.
My gynocologist wrote me a prescription for a year of low dose hormones, but those ran out. And I knew I couldn't get more refills without an appointment (that was long overdue) but I just couldn't bring myself to make an appointment. Just picking up the phone to call filled me with anxiety. So, I put it off.
This afternoon I finally did it. I called for an appointment.
Out of nowhere tears started streaming down my face as I did it. I really wasn't expecting that.
They wanted to know why I was making the appointment and just talking about the hysterectomy stirred stuff up in me. They realized how long it had been and commented on that. I then started babbling on about anxiety and pregnant people sitting in the waiting room. (To a fellow infertile that makes sense. I'm not sure the person on the phone had any idea what I was talking about.)
I asked if I could bring my baby to the appointment because I didn't have anywhere else for him to go. I said he could just sit in his stroller. She asked how old he was and then said it's no problem. That was the end of the conversation.
I hung up and started bawling. There was just so much emotion stirred up in me.
A minute goes by and the phone rings. I saw it was the gynocologist office so I answered it despite my crying. It was the end of the day so I didn't want to risk not being able to call them back and find out what they wanted.
It was another woman this time. She said they wanted to get a little more information as to why I was making the appointment so they knew what kind of appointment to book me for.
But I quickly realized the real reason they were calling is because I freaked them out by saying I have a 10 month old baby. (Which, in hindsight, is a little funny.)
She said "We have no record of you having a baby."
Uh, yeah, I had a hysterectomy a year and a half ago so I obviously did not give birth to my 10 month old.
Meanwhile, by the way, I am full on crying through this whole conversation, so I felt like I had to address the obvious sobs.
I told her I have a lot of anxiety about this appointment. And going back into this office will bring up a lot of old feelings. I used to go there to get pregnant. Now I have no uterus.
She said something about how I am a mother now.
Which is totally valid and I understand her perspective. But, not having been through what I have, she can't fully understand why having a baby doesn't magically make all that pain go away.
Things moved very quickly from infertility patient to cancer diagnosis and radical hysterectomy.
I have not been back there since.
We were well into the adoption process at the time I was diagnosed, but again, that didn't make it any easier.
As I cried and talked about it a little more, she really got it and said it is understandable after everything I have been through.
She asked if I wanted a new doctor, which wasn't AT ALL what I wanted. My doctor was amazing with giving me my diagnosis and talking me through all the surgery decisions when my oncologist was a self absorbed asshat.
She asked if I wanted my doctor to call me before my appointment to check in, which was an amazing offer. I really appreciated that. When my doctor called me with me diagnosis, she actually gave me her cell phone number in case I needed her. She really went above and beyond.
The way this all hit me...just from one phone call to the office...I am worried about going to this appointment. It's going to be so hard.
I feel like I have some sort of infertility post traumatic stress.
Friday, March 18, 2011
Healthy
Jayden had his six month well visit with the pediatrician last night.
I found myself getting emotional while the doctor talked to us about how Jayden is doing. She was talking about how healthy and strong he is and how he's hitting all his milestones early.
I won't go into detail on why, but we went into this adoption fully prepared for possible health problems, delays, or special needs. I worried at every appointment. I worried when he was slow to put on weight. I worried that they were watching how his head was growing. I worried about everything.
To then go to our six month appointment and have our doctor go on and on about how well he is doing made me get tears in my eyes.
This little tiny person has overcome so much and is doing so well. It's amazing.
I am so thankful.
I found myself getting emotional while the doctor talked to us about how Jayden is doing. She was talking about how healthy and strong he is and how he's hitting all his milestones early.
I won't go into detail on why, but we went into this adoption fully prepared for possible health problems, delays, or special needs. I worried at every appointment. I worried when he was slow to put on weight. I worried that they were watching how his head was growing. I worried about everything.
To then go to our six month appointment and have our doctor go on and on about how well he is doing made me get tears in my eyes.
This little tiny person has overcome so much and is doing so well. It's amazing.
I am so thankful.
Jayden destroying the place as we wait for the nurse to come back in and give him shots.
Sunday, April 25, 2010
Insensitive
We all know by now that when you are going through a tough time, there is nothing like the support of people who have been through it. Without blogging and twitter and support from adoption and infertility friends, I am not sure I would have made it through the past few months.
With so much great support, you begin to open up and trust that you can talk about your feelings and that it is safe. You may even start to think you can talk to people outside of your support system. Which is great. It's great to be able to open up and not hide what you are going through. Infertility can be so isolating.
But, beware that when you open up to people who have no idea what you are going through, they can say awful things. Awful things that make you fight back tears until you can be alone and cry.
This past week was one of the hardest weeks I have had during our adoption wait. The children had off from school for spring break so I was working long hours and I was exhausted from the roller coaster of emotions that came from being profiled. Someone mentioned that I looked tired. I told her that it was a tough week for our adoption wait. I told her we were being profiled and it didn't work out. For about a second it felt good to talk about it. She then starts telling me a story about how one of her cousins just found out she is pregnant. That she didn't think it was possible to get pregnant because she did fertility meds to get pregnant the first time and they weren't even trying now. I couldn't figure out why she was telling me this story. She went on and on and then basically ended it by saying, "So, I've been praying for both of you." What?? What was the point of telling me that? Clearly I am never going to accidentally get pregnant. She is well aware of my lack of uterus. So, her story was to tell me how other people have it rough too? And her "rough time" story is someone getting pregnant accidentally when she didn't want to?
There was also a person who when I told her I had endometrial cancer, told me about her friend who really had cancer. Unlike my fake kind. I know how lucky I am that it was caught early and that all I needed was surgery. But, it doesn't change the fact that I lost my uterus to cancer. I honestly lost count of the number of times leading up to my surgery that she told me I was fine and acted like I was making a big deal out of nothing. All I had said was that I was scared of the surgery. Even my oncologist said he didn't know how advanced the cancer was until he went in. I was scared. But, I had to endure multiple conversations about how there were people in hospitals with real cancer.
I told one of the parents about it all over the phone. I needed to give everyone notice because I would be closing for two weeks to have the surgery and recover. The very next time I saw her after telling her I was having a hysterectomy, she told me she was pregnant. She went on and on about it and told me about how they bought onesies to decorate to give to their parents as a fun way to tell them they were pregnant. They hadn't even told their parents yet, but she had to tell me then? I barely held it together while she talked and then cried so hard as soon as she left. It wasn't that she was pregnant that bothered me. It was that she decided to tell me then and go on and on without any regard for what I was going through. She really thought I wanted to listen to her talk about her morning sickness?
You know what another person said to me when I told them? "I don't get it. What's the big deal? You couldn't have kids anyway, right? I mean, no offense."
Do you have any idea how many people have told me their abortion stories? Just in the past year two people have told me that they've had multiple abortions and that they were on birth control each time they got pregnant. I am not in any way judging their choices, but for pete's sake, why do people feel the need to tell me these things? Both times the women ended the conversation by saying something like, "Fertility is wasted on someone like me."
After seven years of trying to start our family, I've heard it all. I wish I had realized a long time ago that all my feelings are normal. That there are other people out there feeling the same way. That I didn't have to be alone for so many years.
National Infertility Awareness Week is April 24-May 1, 2010.
With so much great support, you begin to open up and trust that you can talk about your feelings and that it is safe. You may even start to think you can talk to people outside of your support system. Which is great. It's great to be able to open up and not hide what you are going through. Infertility can be so isolating.
But, beware that when you open up to people who have no idea what you are going through, they can say awful things. Awful things that make you fight back tears until you can be alone and cry.
This past week was one of the hardest weeks I have had during our adoption wait. The children had off from school for spring break so I was working long hours and I was exhausted from the roller coaster of emotions that came from being profiled. Someone mentioned that I looked tired. I told her that it was a tough week for our adoption wait. I told her we were being profiled and it didn't work out. For about a second it felt good to talk about it. She then starts telling me a story about how one of her cousins just found out she is pregnant. That she didn't think it was possible to get pregnant because she did fertility meds to get pregnant the first time and they weren't even trying now. I couldn't figure out why she was telling me this story. She went on and on and then basically ended it by saying, "So, I've been praying for both of you." What?? What was the point of telling me that? Clearly I am never going to accidentally get pregnant. She is well aware of my lack of uterus. So, her story was to tell me how other people have it rough too? And her "rough time" story is someone getting pregnant accidentally when she didn't want to?
There was also a person who when I told her I had endometrial cancer, told me about her friend who really had cancer. Unlike my fake kind. I know how lucky I am that it was caught early and that all I needed was surgery. But, it doesn't change the fact that I lost my uterus to cancer. I honestly lost count of the number of times leading up to my surgery that she told me I was fine and acted like I was making a big deal out of nothing. All I had said was that I was scared of the surgery. Even my oncologist said he didn't know how advanced the cancer was until he went in. I was scared. But, I had to endure multiple conversations about how there were people in hospitals with real cancer.
I told one of the parents about it all over the phone. I needed to give everyone notice because I would be closing for two weeks to have the surgery and recover. The very next time I saw her after telling her I was having a hysterectomy, she told me she was pregnant. She went on and on about it and told me about how they bought onesies to decorate to give to their parents as a fun way to tell them they were pregnant. They hadn't even told their parents yet, but she had to tell me then? I barely held it together while she talked and then cried so hard as soon as she left. It wasn't that she was pregnant that bothered me. It was that she decided to tell me then and go on and on without any regard for what I was going through. She really thought I wanted to listen to her talk about her morning sickness?
You know what another person said to me when I told them? "I don't get it. What's the big deal? You couldn't have kids anyway, right? I mean, no offense."
Do you have any idea how many people have told me their abortion stories? Just in the past year two people have told me that they've had multiple abortions and that they were on birth control each time they got pregnant. I am not in any way judging their choices, but for pete's sake, why do people feel the need to tell me these things? Both times the women ended the conversation by saying something like, "Fertility is wasted on someone like me."
After seven years of trying to start our family, I've heard it all. I wish I had realized a long time ago that all my feelings are normal. That there are other people out there feeling the same way. That I didn't have to be alone for so many years.
National Infertility Awareness Week is April 24-May 1, 2010.
If you would like more information about making #infertility a trending topic on twitter, please visit The Long and Winding Road.
Sunday, March 21, 2010
I have no uterus
It's been exactly three months since my hysterectomy surgery.
Leading up to my hysterectomy, I talked to as many people as I could who had the surgery. It was hard to find young people who had the surgery because it's most commonly done on post-menopausal women. My oncologist was not very reassuring and the more I thought about it, the more I was convinced I was going to die from the surgery or at the very least the surgery would change my life forever.
Kim from Beautiful Wreck helped me more than she will ever know. She was open and honest and gave me all the details I wanted. She even showed me a picture of her uterus after they took it out. She answered all my questions no matter how ridiculous they were. She told me I was going to survive the surgery and be okay. She gave me the invaluable advice of scheduling my pain pills to overlap or else I would be in big trouble. Even if it meant setting an alarm to take them in the middle of the night. (Boy was she right about that.) She even gave me her phone number and told me I could call her with any questions. She also "introduced" me to someone else who was having the same surgery on the same day. We exchanged numbers and texted each other throughout the recovery process.
What if I didn't have her to go to? It's only because of twitter that I found her. If it weren't for that, what was I supposed to do? Nobody from my oncologist's office ever sat me down before my surgery and told me what they were going to do. Or what things would be like after. You would think they would at the very least have some diagrams of what is done during the procedure. They never even told me they were taking my cervix. I obviously knew they were taking the uterus. They asked if I wanted them to take my ovaries. Nobody mentioned the cervix. How was I supposed to know? Even with the ovary decision, they said they recommend it but they never talked me through the decision. I called my OB/GYN crying and she helped me decide.
I bought Fran Drescher's book because she had the same kind of cancer I did. I started reading it and it scared me so much more. She said when she came home, her dog knew something was different about her. She said he acted differently around her from that point on and then he passed away. I was so freaked out. I started imagining Brinkley not being as close to me anymore. (Which by the way did not happen at all. He was so happy to see me and is just as attached to me as he always was.) Adam made me put the book down and not read anymore.
Then there was after the surgery. It was the worst pain of my entire life. I was so lucky to have Adam there to help me do everything. There was nothing I could do on my own. They sent me home after only one night in the hospital. Which was fine because I didn't sleep the entire time I was there anyway. The only thing I really missed when we left was the catheter. (Words I never thought I would say.)
Beyond the physical recovery, nobody cared about how I was doing emotionally. I was 31, childless, and had been trying to conceive for many years. All within a couple weeks I went from that to being diagnosed with endometrial cancer and having my uterus and ovaries taken from me. It all happened very quickly and the realities of it still haven't fully hit me.
I feel like this really highlights how screwed up our health care system is. Shouldn't this diagnosis and surgery be paired with therapy? How about a single conversation with me to determine whether I was okay mentally? Especially considering I have a history of anxiety and depression (like many people who have experienced years of infertility), which they knew. If I didn't have Adam and our adoption plans, who knows where I would be at mentally. Wasn't anybody going to check on that?
When I went for my follow-up appointment weeks later, he told me my cancer was gone and the surgery was a success. No physical exam. He never came in the room and sat down. He stood in the doorway and the appointment was over in minutes.
A few more weeks went by and I was feeling so tired I could barely get out of bed, so I called my OB/GYN and she prescribed me a very low dose of hormone replacement. I've been on it a couple weeks now. Not sure if it made a huge difference, but I know it's good for bone density and reducing the risk of stroke.
Physically, I am recovered, but I know I have a long way to go emotionally. Sometimes out of the blue I will remember I have no uterus and it will hit me like a punch in the stomach. I have a lot of feelings of guilt surrounding everything. I feel like maybe I should have fought the treatment plan. Pushed for more tests. Tried meds before surgery. I gave up my uterus without a fight. Maybe I was just being lazy. I didn't want to deal with it. After being diagnosed, I immediately made the surgery appointment. I just wanted it over with.
It's hard to know that we have to rely on someone else to decide we can be parents. Even though we were already doing adoption so nothing has really changed. Somehow it feels different. More pressure. Me getting pregnant can never be a back up plan. Somebody has to choose us, or we will never be parents. The one thing I have always wanted more than anything else in the world and it's completely out of my control.
(This is the point where I stop, breathe, and remind myself that we will be parents. It will happen for us. Our long wait will eventually be over.)
One thing I know for sure is that all the support that was missing from the medical community was more than made up for by my blog and twitter friends. I can't imagine having to go through all of that without all of you.
....And thank you for letting me use my blog as free therapy today :)
Leading up to my hysterectomy, I talked to as many people as I could who had the surgery. It was hard to find young people who had the surgery because it's most commonly done on post-menopausal women. My oncologist was not very reassuring and the more I thought about it, the more I was convinced I was going to die from the surgery or at the very least the surgery would change my life forever.
Kim from Beautiful Wreck helped me more than she will ever know. She was open and honest and gave me all the details I wanted. She even showed me a picture of her uterus after they took it out. She answered all my questions no matter how ridiculous they were. She told me I was going to survive the surgery and be okay. She gave me the invaluable advice of scheduling my pain pills to overlap or else I would be in big trouble. Even if it meant setting an alarm to take them in the middle of the night. (Boy was she right about that.) She even gave me her phone number and told me I could call her with any questions. She also "introduced" me to someone else who was having the same surgery on the same day. We exchanged numbers and texted each other throughout the recovery process.
What if I didn't have her to go to? It's only because of twitter that I found her. If it weren't for that, what was I supposed to do? Nobody from my oncologist's office ever sat me down before my surgery and told me what they were going to do. Or what things would be like after. You would think they would at the very least have some diagrams of what is done during the procedure. They never even told me they were taking my cervix. I obviously knew they were taking the uterus. They asked if I wanted them to take my ovaries. Nobody mentioned the cervix. How was I supposed to know? Even with the ovary decision, they said they recommend it but they never talked me through the decision. I called my OB/GYN crying and she helped me decide.
I bought Fran Drescher's book because she had the same kind of cancer I did. I started reading it and it scared me so much more. She said when she came home, her dog knew something was different about her. She said he acted differently around her from that point on and then he passed away. I was so freaked out. I started imagining Brinkley not being as close to me anymore. (Which by the way did not happen at all. He was so happy to see me and is just as attached to me as he always was.) Adam made me put the book down and not read anymore.
Then there was after the surgery. It was the worst pain of my entire life. I was so lucky to have Adam there to help me do everything. There was nothing I could do on my own. They sent me home after only one night in the hospital. Which was fine because I didn't sleep the entire time I was there anyway. The only thing I really missed when we left was the catheter. (Words I never thought I would say.)
Beyond the physical recovery, nobody cared about how I was doing emotionally. I was 31, childless, and had been trying to conceive for many years. All within a couple weeks I went from that to being diagnosed with endometrial cancer and having my uterus and ovaries taken from me. It all happened very quickly and the realities of it still haven't fully hit me.
I feel like this really highlights how screwed up our health care system is. Shouldn't this diagnosis and surgery be paired with therapy? How about a single conversation with me to determine whether I was okay mentally? Especially considering I have a history of anxiety and depression (like many people who have experienced years of infertility), which they knew. If I didn't have Adam and our adoption plans, who knows where I would be at mentally. Wasn't anybody going to check on that?
When I went for my follow-up appointment weeks later, he told me my cancer was gone and the surgery was a success. No physical exam. He never came in the room and sat down. He stood in the doorway and the appointment was over in minutes.
A few more weeks went by and I was feeling so tired I could barely get out of bed, so I called my OB/GYN and she prescribed me a very low dose of hormone replacement. I've been on it a couple weeks now. Not sure if it made a huge difference, but I know it's good for bone density and reducing the risk of stroke.
Physically, I am recovered, but I know I have a long way to go emotionally. Sometimes out of the blue I will remember I have no uterus and it will hit me like a punch in the stomach. I have a lot of feelings of guilt surrounding everything. I feel like maybe I should have fought the treatment plan. Pushed for more tests. Tried meds before surgery. I gave up my uterus without a fight. Maybe I was just being lazy. I didn't want to deal with it. After being diagnosed, I immediately made the surgery appointment. I just wanted it over with.
It's hard to know that we have to rely on someone else to decide we can be parents. Even though we were already doing adoption so nothing has really changed. Somehow it feels different. More pressure. Me getting pregnant can never be a back up plan. Somebody has to choose us, or we will never be parents. The one thing I have always wanted more than anything else in the world and it's completely out of my control.
(This is the point where I stop, breathe, and remind myself that we will be parents. It will happen for us. Our long wait will eventually be over.)
One thing I know for sure is that all the support that was missing from the medical community was more than made up for by my blog and twitter friends. I can't imagine having to go through all of that without all of you.
....And thank you for letting me use my blog as free therapy today :)
Wednesday, January 13, 2010
Cancer Free
I had my post-op appointment today and I am officially cancer free!!!
In typical Dr. House fashion, my oncologist stood in the doorway the entire time and the appointment was over in less than ten minutes.
But, it was all good news!
The cancer was definitely only stage one and they got it all during surgery. In fact, there was very little left in there after my D&C in November.
I require no further treatment.
I don't even have to have my follow-up appointments with my oncologist. I will be going to my gynocologist to be checked every six months for the first two years and then once a year after that.
I could not have made it through the past month and a half without all the love and support I have received. If you are reading this, then YOU are who I am talking about! Thank you so much!!!
In typical Dr. House fashion, my oncologist stood in the doorway the entire time and the appointment was over in less than ten minutes.
But, it was all good news!
The cancer was definitely only stage one and they got it all during surgery. In fact, there was very little left in there after my D&C in November.
I require no further treatment.
I don't even have to have my follow-up appointments with my oncologist. I will be going to my gynocologist to be checked every six months for the first two years and then once a year after that.
I could not have made it through the past month and a half without all the love and support I have received. If you are reading this, then YOU are who I am talking about! Thank you so much!!!
Tuesday, January 12, 2010
Post-Op Appointment
I have my post-op appointment tomorrow at 11.
If you don't know why I am dreading seeing my oncologist, click here.
I would have thought if it were good news, he would have called me by now to let me know.
This is how my mind works. I start to think that if it were good news, he would have called me by now to tell me everything is fine and not to worry. But the fact that he is waiting until my appointment must mean it is bad news and he is waiting to tell me in person with Adam there.
When my gynocologist first told me of my diagnosis, she apologized for doing it over the phone. She said usually this sort of thing is done in person in an appointment. So, that has been in the back of my mind.
BUT, I know how I am. I know I worry too much about everything and that a lot of the time, it is a whole lot of worrying for nothing.
So, I am going to keep reminding myself that my oncologist is an ass. He isn't sitting there thinking, "Oh, I bet Lisa would feel a lot better if I called her and told her the pathology results were fine." Instead, my results came in and they probably went right into my chart and will be dealt with when I have my appointment. He probably hasn't even seen them or cared about them. He will probably look at them in the hall before he walks into the exam room I am in.
Or at least that is what I am telling myself.
As he said in my pre-op appointment, they have no way of knowing what stage the cancer is until they go in and take it all out. So, I know there is a chance bad news is coming tomorrow. He could tell me I need radiation or some other further treatment. But for now I am trying to remind myself that the chances of this all being over with are very good. I am especially telling myself over and over again not to read into him not calling me about results. Even though I am sure the results were in by last week at the latest.
No matter what the results are, Adam will be there and we will deal with whatever it is. Who knows, maybe my oncologist will even be nice this time. (Or at least put his phone down long enough to give me the results.)
If you don't know why I am dreading seeing my oncologist, click here.
I would have thought if it were good news, he would have called me by now to let me know.
This is how my mind works. I start to think that if it were good news, he would have called me by now to tell me everything is fine and not to worry. But the fact that he is waiting until my appointment must mean it is bad news and he is waiting to tell me in person with Adam there.
When my gynocologist first told me of my diagnosis, she apologized for doing it over the phone. She said usually this sort of thing is done in person in an appointment. So, that has been in the back of my mind.
BUT, I know how I am. I know I worry too much about everything and that a lot of the time, it is a whole lot of worrying for nothing.
So, I am going to keep reminding myself that my oncologist is an ass. He isn't sitting there thinking, "Oh, I bet Lisa would feel a lot better if I called her and told her the pathology results were fine." Instead, my results came in and they probably went right into my chart and will be dealt with when I have my appointment. He probably hasn't even seen them or cared about them. He will probably look at them in the hall before he walks into the exam room I am in.
Or at least that is what I am telling myself.
As he said in my pre-op appointment, they have no way of knowing what stage the cancer is until they go in and take it all out. So, I know there is a chance bad news is coming tomorrow. He could tell me I need radiation or some other further treatment. But for now I am trying to remind myself that the chances of this all being over with are very good. I am especially telling myself over and over again not to read into him not calling me about results. Even though I am sure the results were in by last week at the latest.
No matter what the results are, Adam will be there and we will deal with whatever it is. Who knows, maybe my oncologist will even be nice this time. (Or at least put his phone down long enough to give me the results.)
Thursday, December 10, 2009
Let The Worrying Begin
I have been waiting to get the phone call letting me know there was a mistake, they were wrong, I am fine and don't need surgery.
But instead, I got the call today that after my oncology appointment tomorrow, I need to go to the hospital for blood work and a chest xray. Apparently that's normal pre-op stuff before major surgery.
This is really happening.
I get bad anxiety about normal doctor appointments, so tomorrow has me very scared.
Tomorrow I will be finding out what kind of hysterectomy I will need, which can make a big difference in recovery time. I will also find out whether I can keep my ovaries, how long I will have to be in the hospital after surgery, and what this all means for me long term.
There will probably be a lot of serious faces and uncomfortable situations. And answers to questions that I don't want to know the answers to.
I have not gone to sleep before midnight a single night since this all started. And I get up everyday between 5-6. I am sick. I am exhausted. I am scared.
I was hoping to sleep this afternoon for a couple hours, but right as I fell asleep, the phone rang and it was the oncology nurse. I have been thinking and worrying ever since then. Now it's time to go get the kids off the bus.
But instead, I got the call today that after my oncology appointment tomorrow, I need to go to the hospital for blood work and a chest xray. Apparently that's normal pre-op stuff before major surgery.
This is really happening.
I get bad anxiety about normal doctor appointments, so tomorrow has me very scared.
Tomorrow I will be finding out what kind of hysterectomy I will need, which can make a big difference in recovery time. I will also find out whether I can keep my ovaries, how long I will have to be in the hospital after surgery, and what this all means for me long term.
There will probably be a lot of serious faces and uncomfortable situations. And answers to questions that I don't want to know the answers to.
I have not gone to sleep before midnight a single night since this all started. And I get up everyday between 5-6. I am sick. I am exhausted. I am scared.
I was hoping to sleep this afternoon for a couple hours, but right as I fell asleep, the phone rang and it was the oncology nurse. I have been thinking and worrying ever since then. Now it's time to go get the kids off the bus.
Sunday, December 6, 2009
Exhausted
This past week has been exhausting.
A week ago right now I was anxious about getting my pathology results from the doctor because I knew she would be calling the next day.
Monday night I got the call that changed everything.
On Tuesday I got a call from the oncologist's office to go over my appointment details. I began working on getting a surgery date around Christmas time so I could recover with taking as little time off from work as possible.
Wednesday I got my surgery date. December 21. It became real.
Thursday and Friday I had to tell all the parents of the children I work with.
I've been sick all weekend. Which came as no surprise to me. That's what happens when you spend the whole week freaking out and not sleeping.
I have my oncologist appointment on Friday. Adam already took off from work and we are leaving as soon as I get the kids on the bus in the morning. I am really scared of everything they are going to tell me. All the details. It's going to be a huge reality check. I have about 100 questions for the oncologist, but they are all questions I don't think I really want to know the answer to. I want so badly to run away and hide, but I obviously know I need to go to this appointment.
I need to start calming down and sleeping. I don't really have much experience in calm. It sounds nice. I have a lifetime of experience in anxiety and worry. I have spent my whole life worrying about everything. Most of the time I was worrying about things that didn't even really matter. Now I have something that really matters to worry about. And I have to try and be calm?
A week ago right now I was anxious about getting my pathology results from the doctor because I knew she would be calling the next day.
Monday night I got the call that changed everything.
On Tuesday I got a call from the oncologist's office to go over my appointment details. I began working on getting a surgery date around Christmas time so I could recover with taking as little time off from work as possible.
Wednesday I got my surgery date. December 21. It became real.
Thursday and Friday I had to tell all the parents of the children I work with.
I've been sick all weekend. Which came as no surprise to me. That's what happens when you spend the whole week freaking out and not sleeping.
I have my oncologist appointment on Friday. Adam already took off from work and we are leaving as soon as I get the kids on the bus in the morning. I am really scared of everything they are going to tell me. All the details. It's going to be a huge reality check. I have about 100 questions for the oncologist, but they are all questions I don't think I really want to know the answer to. I want so badly to run away and hide, but I obviously know I need to go to this appointment.
I need to start calming down and sleeping. I don't really have much experience in calm. It sounds nice. I have a lifetime of experience in anxiety and worry. I have spent my whole life worrying about everything. Most of the time I was worrying about things that didn't even really matter. Now I have something that really matters to worry about. And I have to try and be calm?
Monday, November 30, 2009
Dear Uterus
Dear Uterus,
Message received. I hear you loud and clear. Trust me, the feeling is mutual. I hate you too.
I should have known you were trouble from the time I got my first period at age 11. I was home baby-sitting my little sister and brother all day. With no way of calling my mom to get advice on what to do. It also happened to be the day of my mom's surprise birthday party. So not only was I baby-sitting, but I was cleaning and decorating, and letting guests in to wait for the big surprise. I should have known by that timing just how mean you were.
I fought for you. I gave you the benefit of the doubt. When I lost half of all the blood in my body, I begged to keep you. Even though you were on the verge of killing me.
I've had surgeries and procedures and taken hormones that made me sick for years.
The only thing I asked from you in return was a baby. Was that so much to ask? It's your only job!
I've given you plenty of chances and you have done nothing but try and kill me over and over again.
Endometrial cancer? Really? That's a low blow. After all I have done for you.
You know what?
I am going to let them take you now.
I am breaking up with you.
I am too good for you anyway.
Sincerely,
Lisa
P.S. You suck.
Message received. I hear you loud and clear. Trust me, the feeling is mutual. I hate you too.
I should have known you were trouble from the time I got my first period at age 11. I was home baby-sitting my little sister and brother all day. With no way of calling my mom to get advice on what to do. It also happened to be the day of my mom's surprise birthday party. So not only was I baby-sitting, but I was cleaning and decorating, and letting guests in to wait for the big surprise. I should have known by that timing just how mean you were.
I fought for you. I gave you the benefit of the doubt. When I lost half of all the blood in my body, I begged to keep you. Even though you were on the verge of killing me.
I've had surgeries and procedures and taken hormones that made me sick for years.
The only thing I asked from you in return was a baby. Was that so much to ask? It's your only job!
I've given you plenty of chances and you have done nothing but try and kill me over and over again.
Endometrial cancer? Really? That's a low blow. After all I have done for you.
You know what?
I am going to let them take you now.
I am breaking up with you.
I am too good for you anyway.
Sincerely,
Lisa
P.S. You suck.
Sunday, November 22, 2009
Sunday Night Stress
It's Sunday night. Time to get ready for a new work week. The only thing good about Sunday nights is watching Brothers and Sisters and that isn't even on tonight.
I am completely overwhelmed. The stress of everything this week is getting to me.
I am really scared of my surgery on Tuesday. Really scared. Scared of going to the hospital, scared of being put completely out, scared of the surgery itself, scared of what they will find. I've had this surgery three times before, but it's been 4 years since the last time. And my Mom can't come this time and that makes it a little scarier. (It's probably scarier for Adam too since he won't have back up if I run away in my hospital gown at the last minute and refuse to have surgery.)
Thanksgiving is this week. That brings out a whole bunch of feelings I don't want to deal with. Thanksgiving day is 16 months that we have officially been "waiting." Holidays always make the wait a lot worse for me. I can't believe we are going to have another Thanksgiving without our baby. A year ago right now we were being profiled for the first time. I was so sad when we were not chosen, but I knew the chances of being chosen the first time were slim. I told myself not to worry and that by next Thanksgiving we would probably be with our baby. Since then I have learned not to tell myself things like that. (Or at least I try not to anymore.)
I am really missing my siblings. When they are home, everything is so much fun. We have dinners together and hang out and play games. But, they are only here a couple times a year and that makes me so sad. This was a really bad weekend. I spent the whole time being sad and anxious. It's times like these that I wish they could be here. They can't come home at all for Thanksgiving this year.
I am sorry for all the sad blog posts lately. I will be writing a list of things I am thankful for later this week to make up for it. I do have a lot to be thankful for. And if you are reading this, you are one of those things I am thankful for!!!
I am completely overwhelmed. The stress of everything this week is getting to me.
I am really scared of my surgery on Tuesday. Really scared. Scared of going to the hospital, scared of being put completely out, scared of the surgery itself, scared of what they will find. I've had this surgery three times before, but it's been 4 years since the last time. And my Mom can't come this time and that makes it a little scarier. (It's probably scarier for Adam too since he won't have back up if I run away in my hospital gown at the last minute and refuse to have surgery.)
Thanksgiving is this week. That brings out a whole bunch of feelings I don't want to deal with. Thanksgiving day is 16 months that we have officially been "waiting." Holidays always make the wait a lot worse for me. I can't believe we are going to have another Thanksgiving without our baby. A year ago right now we were being profiled for the first time. I was so sad when we were not chosen, but I knew the chances of being chosen the first time were slim. I told myself not to worry and that by next Thanksgiving we would probably be with our baby. Since then I have learned not to tell myself things like that. (Or at least I try not to anymore.)
I am really missing my siblings. When they are home, everything is so much fun. We have dinners together and hang out and play games. But, they are only here a couple times a year and that makes me so sad. This was a really bad weekend. I spent the whole time being sad and anxious. It's times like these that I wish they could be here. They can't come home at all for Thanksgiving this year.
I am sorry for all the sad blog posts lately. I will be writing a list of things I am thankful for later this week to make up for it. I do have a lot to be thankful for. And if you are reading this, you are one of those things I am thankful for!!!
Saturday, November 21, 2009
This Wasn't Supposed To Happen
I had a plan. I was taking a break from everything fertility. I had three normal biopsies in a row. I had an IUD put in that was supposed to be a treatment for abnormal cell growth. Everything was supposed to be fine. My doctor said she wanted me to have another biopsy in a year just to be safe. Nothing to worry about, right?
Meanwhile, my uterus was plotting against me.
They already know from the biopsy that the cells are back and they are worse than ever. They have crossed over from being annoying and hard to get rid of to being dangerous. There are a couple different ways things can go after the surgery on Tuesday and none of them are good.
At the very least I will be on hormones to kill the cells. I have done this before and can do it again, but it's not fun. There are a list of side effects and I get them all. I am sick and pale when I am on them. My mom can look at pictures and pick out which ones were taken while I was on it.
Worst case scenerio is that the oncologist decides I need to have a hysterectomy. Not exactly what a 31 yr old who has never had children wants to hear.
I am trying to slowly come to terms with the fact that I am probably never going to be pregnant. A lot of people come to terms with this before they begin the adoption process, but my situation was a little different. I always thought we would begin with adoption and then have a mix of adopted and biological children. At 31, I am not ready to just close the door on that possibility.
Meanwhile, my uterus was plotting against me.
They already know from the biopsy that the cells are back and they are worse than ever. They have crossed over from being annoying and hard to get rid of to being dangerous. There are a couple different ways things can go after the surgery on Tuesday and none of them are good.
At the very least I will be on hormones to kill the cells. I have done this before and can do it again, but it's not fun. There are a list of side effects and I get them all. I am sick and pale when I am on them. My mom can look at pictures and pick out which ones were taken while I was on it.
Worst case scenerio is that the oncologist decides I need to have a hysterectomy. Not exactly what a 31 yr old who has never had children wants to hear.
I am trying to slowly come to terms with the fact that I am probably never going to be pregnant. A lot of people come to terms with this before they begin the adoption process, but my situation was a little different. I always thought we would begin with adoption and then have a mix of adopted and biological children. At 31, I am not ready to just close the door on that possibility.
Friday, November 20, 2009
Biopsy Results
I got a call from my doctor with my biopsy results.
It's not good. The abnormal cells are back and they are worse than they have ever been before. I have to have surgery Tuesday morning. They will be doing a D&C and then sending everything to the oncologist to see where we are at.
Based on what they know so far, there is a real possibility that they are going to find cancerous cells and I will need a hysterectomy. Which would save my life, but obviously mean I can never have children.
When she told me, all of a sudden I felt like I was in some dramatic made for television movie. Like this could not possibly be my real life.
So far I have cried, told Adam and my Mom, and called all the parents to tell them I need to close on Tuesday (I hated to do that because I have never closed for anything other than holidays before.) Oh, yeah, and then cried more.
My doctor was really nice. She apologized for telling me on the phone. She thought if she asked me to come in right away it would scare me and make it worse. She was right. She gave me her personal cell phone number in case I need to call her this weekend. That was really nice of her.
What is amazing is that this is the first time I have ever not worried about getting my biopsy results. I told myself they would be normal and everything would be fine and didn't even worry about them. My last three biopsies were normal. I was allowed to wait a whole year before getting another biopsy because I had three normal ones in a row. This wasn't supposed to happen.
It's not good. The abnormal cells are back and they are worse than they have ever been before. I have to have surgery Tuesday morning. They will be doing a D&C and then sending everything to the oncologist to see where we are at.
Based on what they know so far, there is a real possibility that they are going to find cancerous cells and I will need a hysterectomy. Which would save my life, but obviously mean I can never have children.
When she told me, all of a sudden I felt like I was in some dramatic made for television movie. Like this could not possibly be my real life.
So far I have cried, told Adam and my Mom, and called all the parents to tell them I need to close on Tuesday (I hated to do that because I have never closed for anything other than holidays before.) Oh, yeah, and then cried more.
My doctor was really nice. She apologized for telling me on the phone. She thought if she asked me to come in right away it would scare me and make it worse. She was right. She gave me her personal cell phone number in case I need to call her this weekend. That was really nice of her.
What is amazing is that this is the first time I have ever not worried about getting my biopsy results. I told myself they would be normal and everything would be fine and didn't even worry about them. My last three biopsies were normal. I was allowed to wait a whole year before getting another biopsy because I had three normal ones in a row. This wasn't supposed to happen.
Thursday, November 12, 2009
Doctor Appointment
I was a grown up and went to my appointment today.
Which was a good thing because my doctor found the problem and I should be doing better within the next couple weeks.
Ever since I stopped fertility meds, I have to be on some kind of hormone at all times or else I bleed to my death. I know it sounds dramatic, but it's true. My body will just keep bleeding until I have no blood left. One time it got the point where I lost half of all the blood in my entire body. So, now I am always on something.
For a while it was two birth control pills a day. But, even with that I still had bleeding and cramps every day. For two years. Every day.
I finally got a new doctor who put in an IUD and it worked. I had no bleeding and no cramping until recently when I started bleeding again.
Today when she came in the room she said, "Well, it worked for over a year. That is impressive for you." I agreed. It was nice to have a break from it all. We talked a little about what else we could try next. I was already preparing myself for years of daily bleeding again.
But guess what....
We didn't have to try anything new because it turns out my IUD had become detached and that was causing the problem! She took it out and put in a new one!! Yay.
I had to have a biopsy while I was there because I have a history of abnormal cell growth. It was really painful and I was cramping all afternoon, but now I am feeling better and happy it's over with. Breathing a huge sigh of relief.
I just want to take a moment and thank everyone for their support. You are awesome. It really made a difference. I was sitting in the waiting room surrounded by magazines about babies and pregnant women, pictures of babies and pregnant women, and actual pregnant women. I had tears in my eyes and felt like a crazy person, but I kept thinking of so many of my twitter friends who have talked about how hard all of those things are for them. Made me feel less crazy. Thank you.
Which was a good thing because my doctor found the problem and I should be doing better within the next couple weeks.
Ever since I stopped fertility meds, I have to be on some kind of hormone at all times or else I bleed to my death. I know it sounds dramatic, but it's true. My body will just keep bleeding until I have no blood left. One time it got the point where I lost half of all the blood in my entire body. So, now I am always on something.
For a while it was two birth control pills a day. But, even with that I still had bleeding and cramps every day. For two years. Every day.
I finally got a new doctor who put in an IUD and it worked. I had no bleeding and no cramping until recently when I started bleeding again.
Today when she came in the room she said, "Well, it worked for over a year. That is impressive for you." I agreed. It was nice to have a break from it all. We talked a little about what else we could try next. I was already preparing myself for years of daily bleeding again.
But guess what....
We didn't have to try anything new because it turns out my IUD had become detached and that was causing the problem! She took it out and put in a new one!! Yay.
I had to have a biopsy while I was there because I have a history of abnormal cell growth. It was really painful and I was cramping all afternoon, but now I am feeling better and happy it's over with. Breathing a huge sigh of relief.
I just want to take a moment and thank everyone for their support. You are awesome. It really made a difference. I was sitting in the waiting room surrounded by magazines about babies and pregnant women, pictures of babies and pregnant women, and actual pregnant women. I had tears in my eyes and felt like a crazy person, but I kept thinking of so many of my twitter friends who have talked about how hard all of those things are for them. Made me feel less crazy. Thank you.
Wednesday, November 11, 2009
I don't want to go. You can't make me.
I have to go to the doctor tomorrow.
I am freaking out about it.
I have been bleeding for over two months straight. I know I need to go in and find out why.
But, seriously, I just don't want to deal with it. I feel like there should be a pause button on my uterus. I am not using it right now. Can't I just put it on pause until I want to try again to get pregnant? My focus has been completely on adoption. No fertility worries. Apparently, my uterus did not get the memo.
The appointment tomorrow will bring me right out of my adoption frame of mind and put me back into the fertility hell. I am really scared. I don't want to find out what strange thing is wrong this time. Or even worse, have them tell me they have no idea why it's happening.
I am so uncomfortable with these appointments. I know nobody is comfortable there, but I get really freaked out about it. It's so awkward and embarrassing. And as soon as I walk into the office, it brings me right back to all the times I have left there crying because I was given bad news or I was in pain from another procedure or biopsy.
I really, really don't want to go. I feel like a two year old on the verge of a major meltdown. Can't I just kick my feet and stomp and yell and refuse to go?
Subscribe to:
Posts (Atom)
