Today was supposed to be my surgery day. I had planned out blog posts to write while I was going to be in the hospital and how to document my recovery the best way possible. I think I’m still in a bit of shock that the surgery was cancelled and that I’m not going to have to worry about all of that right now. There is still a chance I will be having surgery in the future, but unless something crazy happens soon it won’t be for at least another 6 months or so.
My entire family did so much planning to make sure that they would be able to help me as much as possible through surgery and recovery. While most of my family wasn’t going to be able to be in LA with me, my parents made plans to come to LA for a week to help me get through everything. My parents have come to LA in the past to take care of me after I’ve had surgeries, so I expected that they would do the same this time. But I’m still aware how lucky I am that my parents have the ability to come here to help me out when I need it.
Since the surgery was cancelled, a lot of things have changed but one thing hasn’t. My parents are still going to be in LA with me for the week. I don’t think my parents have ever spent a week with me in LA outside of taking care of me after a surgery, so this will be pretty cool. We are slowly filling our calendar with some fun things that we’ve been wanting to do so we can enjoy this weeklong hangout. I’m going to take a few days off of work since I banked so many hours so I can spend a lot of time with them. But I’ll also be working a little bit as well so I still have some hours saved if I need them in the future.
I think it will be pretty great getting to have this week with my parents here. Normally when they are in LA, they are only here for a day or so and we are pretty busy doing things. They haven’t really met any of my LA friends. But now, they will have a chance to meet all the people I hang out with (and blog about) while they are here. I think it will be pretty cool to get to have everyone meet each other. And my dad is going to join me for an Orangetheory workout too! He usually only does the Thanksgiving workouts, so this will be a nice bonus for him.
I will also be going to San Diego with my parents to visit my grandma. I won’t be in San Diego as long as originally planned (since I won’t be recovering with my parents and I want to work a bit), but I will get to spend a nice weekend with them. It will be much more relaxing this way than it would have been if I was in pain from surgery.
I just wanted to say thank you again to all of you who prayed for my tumors to shrink or put some awesome tumor shrinking thoughts out there. Since I shared the news that my surgery was cancelled, I got so many amazing messages on social media and emails telling me congratulations and how they were so happy for me. I’m so grateful that you all care about me and my health and that you were as excited about my news as I was!
While I won’t be blogging about surgery or recovery now, I’m glad I’ll have much more interesting things to share with you all in the coming weeks. I’m working on getting my social calendar filled up again since I was planning on taking time off. And so far, the things I think will be coming up are going to be so much fun and just a continuation of celebrating not needing surgery today!
Today I should be going to my pre-op appointments for my surgery. But that has been cancelled because my surgery was cancelled! This is totally not what I expected but it’s true! But I should probably explain a bit of what has happened over the past few days.
When I found out that my tumors were adenomas, I learned quite a bit about that type of tumor. One of the main things that I learned was that they are a 1 in 3 million side effect from hormonal birth control and the best way to stop them from growing more is to stop the hormonal birth control (or whatever hormonal treatment you are taking). But in almost all the case studies, it says that the tumors have to be surgically removed as they typically cannot shrink. And if they do shrink, it’s only a little bit.
One of the reasons I was waiting a few months to have surgery was to hopefully have the large tumor shrink a little bit. The smaller the tumor is, the easier the surgery will be. The large tumor was almost 10cm and in my head I wanted it to be under 8cm. I knew that would take a miracle, but I spent time every single day working on visualization and just trying to be as healthy as possible. But I also knew realistically that the chances of the tumors shrinking were really slim and that’s why I’ve been working so hard lately to get ready for surgery.
I had my MRI last week and I figured that I’d learn about what the tumor situation is like at my pre-op appointment. But on Tuesday afternoon, I got a phone call from my surgeon. Not only did my tumors shrink, they shrunk significantly!
My 10cm tumor is now about 4cm, one of my 3cm tumors is now about 1cm, and my other 3cm tumor is not able to be found anymore! This is seriously a miracle! My surgeon has never seen this happen with any of his cases before. There is no medical explanation for what happened so I’m just considering it a medical miracle! I know that there is some serious power behind positive thinking, but this is beyond what I ever imagined could happen!
While there are still issues that can happen with having the biggest tumor in me, it is no longer as serious as it was before. The size of the tumor and how it is situated in my liver now makes it something that I could live the rest of my life with. It would still make being pregnant in the future a bit risky, but nothing compared to what the risks would have been if it stayed the original size. And I still cannot use any hormonal treatments as long as the tumors are in me.
But since my life isn’t as threatened as it was before, the plan now is to cancel the surgery. My surgeon gave me the option to continue with it, but it is not his recommendation anymore. Instead, his recommendation is to do another MRI in the fall to see what’s happening if the tumors then. If they are bigger, I will have surgery. If they stay the same size, I will probably have surgery. But there is now the chance that maybe they will shrink even more and maybe disappear completely. This is not normal with these tumors, but nothing is ever normal with my medical situations.
I completely trust my surgeon’s judgement and he has been very open and honest with me about the risks to keep the tumors in and the risks of surgery. He has answered so many of my questions (and there have been so many questions!) and I never felt like he was getting annoyed with me. I’m very lucky to have a surgeon who has been so awesome and I’m glad that he told me honestly that he doesn’t recommend surgery for me right now. If he left it up to me, I probably would have been going back and forth on what I wanted to do.
I’m totally excited to not need to have surgery. This surgery would have been major surgery and there are always risks when you have any surgery. And this one would have had more risks than any other surgery I’ve had before because of potential blood loss and other complications. And I was not looking forward to recovering and not being able to do everything that I’m used to doing.
But at the same time, I do feel a bit weird that I’m not getting rid of these tumors. I’ve been focusing on how glad I will be to have them out of my body that the idea that they are staying is a bit odd. I’m sure that a lot of it is just shock right now and I still can’t believe that I am lucky enough to have my tumors shrink without medical intervention. Soon enough I bet I’ll just be happy that I didn’t have to disrupt my life with a major surgery and the idea of keeping the tumors in me won’t be as weird. I also feel like I was overreacting before with getting ready for surgery, but honestly there is no way we could have known this would happen to me. If my surgeon has never seen this happen before, why would I ever expect it to happen to me?
This is seriously a miracle and I just want to thank everyone who has sent positive and healing thoughts my way or who have kept me in their prayers. I don’t know how this happened to me, but I’m so grateful that for now I don’t need to have surgery next week. My parents will still be coming to town, but now we get to spend a couple of days having fun instead of them having to be here to take care of me while I’m recovering. They don’t come to LA that often and when they do it’s usually for a super short time. So I’m pretty excited to get to spend almost a week with them in LA!
If anything changes or if something doesn’t feel right, there might be a tumor update within the next few months. But if everything keeps going the way they have been going, I won’t have anything to blog about regarding my tumor until my next MRI in the fall. It’s crazy how quickly this chapter of my tumor journey is closing, but I guess since it started in such dramatic fashion that it’s fitting it is ending the same way!
I had what should be my last pre-surgery MRI this week. I needed this MRI so that we could see if any of my tumors have shrunk in the past few months. If they have shrunk, that will help me keep more of my liver during the surgery. It’s ok if they have to take some out since it does regenerate. But it would be nice to need less of my liver to regenerate because the tumors are smaller.
I previously had a monthly challenge to work on visualization to help my tumors shrink. I won’t know if this worked until I see my surgeon for my pre-op day, but I’m feeling happy with the work that I had done. I don’t feel like there is anything else I could have to help them shrink. And if they don’t shrink, that’s ok too because it wasn’t a guarantee they would get smaller after I stopped hormonal birth control. I’m prepared for anything when I see the MRI results.
Before a year ago, I had only had 1 MRI in the past and that was for my hip. But since then I’ve had 1 breast MRI and 2 liver MRIs before this most recent one. So this one was my 4th MRI in under a year. And all of those MRIs involve contrast which means I had to have an IV put in (which isn’t fun since I still don’t do well with needles). And while I’m not super claustrophobic, being inside the MRI tube isn’t fun and it can feel like the sides of the tube are closing in on me. I’m lucky because my head is toward the outside of the tube so I can tilt my head back and see a bit of the room behind me, but it can still feel very closed in.
For the MRI this week, I was feeling a bit stressed about it. Some of the stress was unnecessary (like feeling guilty that this was during work time but I had already banked the hours to cover it) but I also know that I’ve done well in past MRIs and just wanted to make sure that I would be the same this time. I’m always worried that for some reason things will be different this time (I’m like that with the dentist) and I just wanted to have a smooth MRI day.
Things started off rough with me getting there 4o minutes early because I had put it in my calendar at the wrong time, but I figured that is better than being late. And when I checked in, they let me know that they were running 30 minutes behind so I was worried I wouldn’t be home to start work when I told my manager I would be. But somehow, they ended up getting back on time quickly and I was brought back to the MRI area only 5 minutes after my appointment time.
I feel like a pro at MRIs now. I know not to wear things with metal on it so all I had to take off when I was going in was my sweatshirt and my shoes (the tech there was impressed that I wore a sports bra with no metal clasps and knew to do so). I got onto the table and the techs got everything set up with the various pillows to have me in the right position for the MRI. And then I got my IV in (I had warned them that I pass out but I came back very quickly and it wasn’t too bad) and got into the MRI tube.
Since this was my 3rd abdominal MRI, I knew that I would hear prompts to hold my breath at various times. The first time I had to do this, I wasn’t really prepared and since I was nervous it was tough for me to hold my breath when I needed to. This time, I focused on taking steady deep breaths when I didn’t have to worry about holding my breath. When I had to hold my breath, I tried to count in my head to distract myself. And I tried to zone out while the machine was going since it is so loud and can make it seem more claustrophobic for me somehow.
I have to say that this MRI was the easiest one that I’ve done. It does help that I knew what to prepare for, but I could have said that for my second liver MRI and that one still wasn’t as easy as this one was. When it was done, I was actually very surprised it was over. I thought that maybe we were only halfway through or something. But it had gone really easily and I never felt too panicky or anxious while in the MRI tube. The worst part was when the dye went in my IV, but it was not bad at all and more just a weird sensation in my arm.
I really wished I could have looked at the computer to look at my tumors. I know I couldn’t read it properly, but I am curious what things look like now. I did get a little glance at one image from my MRI where you could see the 2 smaller tumors. But since I’m more familiar with the big tumor, I can’t tell too much from looking at the image of the other ones.
In about a week, I meet with the surgeon to go over all of this and to do what should be the final pre-op step. I’m a bit anxious to hear what he will say, but I know whatever he says that things will be ok. I’m going to continue to focus on being calm and taking deep breaths since that worked so well for me in the MRI. I never expected that test to go as smoothly as it did so clearly this plan is working for me. Hopefully it works for me while in pre-op appointments, surgery, and recovery too!
I know I’ve posted a lot about my liver surgery lately (and I will be posting more about it over the next few weeks). I’m now 2 weeks away from surgery and there is so much that I’ve been trying to get done or need to do. I’m still trying to have a lot of fun, but surgery stuff is taking up a lot of my time.
I have the stuff I expected like various doctor appointments and tests. I’ve already done some blood work and today is my MRI. I’ve got my official pre-op appointment next week and that will consist of multiple doctor appointments at one time so I can meet with the surgeon, the anesthesia team, and possibly the inpatient team. I’ve also been working more than normal because I’m banking hours at work. I can’t afford to take time off (I don’t get paid time off at any of my jobs), so I’ve been working extra hours unpaid to cover the time I won’t be working coming up. I’ve got all the hours banked that I think I’ll need, but that has taken a lot of time in the mornings that I usually do other work.
I’ve also been trying to get things ready to be in the hospital for a while. I’ve been getting ideas of things to have with me from friends who have been in the hospital for a while before. I’m hoping the hospital has decent wifi because I have a feeling I’ll be watching a lot of Netflix or Hulu there (also, if I feel up for it then I could even work from the hospital). I’ve also gotten some dresses that are easy to put on and are cheap to wear after surgery. There’s a chance that things with waistbands won’t work for a little bit for me so dresses seemed to be the easiest solution. I also know I might have surgical drains when I go home, so I found these awesome sticky pockets to put in my clothes if I need them.
I still have a pretty decent list of things I still need to get for my time in the hospital and while I’m recovering with my parents. Some things I expected to be easy, like getting some slippers to have with me, but somehow they haven’t been easy to find in stores. I’m guessing I’ll be doing a big Amazon order soon. I might wait until after my pre-op appointment so I know what else I might need. Thank goodness for fast shipping with Amazon Prime! I’ve been told I might get a list when I go in for the pre-op appointment, but if any of you have been through any type of abdominal surgery and have suggestions for things I should have please let me know!
And then of course there is getting my house ready for this all. I will be doing some big cleaning because I don’t want things cluttered when my parents are here and I don’t want things to feel dirty when I am back home. After I’m out of the hospital, I will be recovering with my parents so they can help me out with things or buy things I forgot about. But I still want to try to get as much done now as I can. One thing I was trying to do but have been slacking on is getting some food made and frozen so it’s easy for me to eat at home even if I’m tired. I don’t want to go back to ordering delivery food (plus I’m guessing I’ll be on a restricted diet so I want to have food that I made and know what’s in it).
I know it sounds like I’ve got a handle on things and seem really prepared, but I don’t feel that way at all. There are still so many unknowns with this entire thing and a lot of the answers won’t be things I can really know in advance. I have no idea how my body will react to this all and I can’t prepare for what I don’t know will happen. It has been giving me a pretty steady level of anxiety lately, but nothing as bad as a regular panic attack. And I have had a few minor attacks but fortunately my friends and family have been able to calm me down.
When things were 2 months away or even 1 month away it seemed like I had unlimited time to get ready and that it wasn’t going to be soon. I think it really hit me when I had 3 weeks left how soon this was all going to be. I’m very lucky that I’ve had time to prep for this and it wasn’t an emergency surgery where nothing could be done ahead of time. But sometimes having prep time is the worst because I can analyze things to death. I’m trying to stay as calm as I can be which is why I set my monthly challenge to be being calm and taking more deep breaths.
Over the next 2 weeks, there will be posts about preparing for surgery but I will also have some fun posts in there too. And I am hoping to keep this blog going regularly while I’m recovering, but of course I don’t know how I’ll feel. But I do promise that if there are some days I can’t blog I will get back to writing regularly. I’ve been doing this every weekday for so long, and the idea that I might miss a day does stress me out a bit. But I hope that you all will stick with me while I get through all of this and hopefully I can find some fun things to write about while I’m recovering!
When I found out I needed liver surgery, I knew I would be waiting a little bit before having surgery. First, I want my parents to come take care of me when I have surgery and waiting until at least April was best for their schedules (this isn’t an urgent surgery so there is no rush for them to get here). Also, waiting does give my body a bit of time to hopefully shrink the tumors. And finally, I am hoping to lose a bit more weight before having surgery.
I had things set on being the middle to the end of April (I have a 5K in the beginning of April that I don’t want to miss), but when I saw my surgeon the last time the April schedule wasn’t open yet. So I was waiting on the surgery schedule to have April up so that my surgeon could pick the best day for it. He knew that I was looking at the week after Easter and had my permission to just give me whatever date he could that week as soon as the schedule was up. My surgery is possibly going to be an all day thing, so I might be the only patient he operates on that day.
I had been waiting and waiting for the schedule to open up and finally at the end of last week I got a phone call from the surgery scheduling assistant. My surgery has been booked and I’ve got just over 2 months to go before the tumor (or tumors) will be out!
Even though I’ve known about this for a while, having an actual surgery date makes everything seem real now. I have almost all my doctor appointments leading up to surgery booked (I just need to have my final MRI scheduled) and I know the timeline of when everything will be happening. I’ve let my agents know I will be unable to audition or work then and I’ve figured out exactly how much longer I have to bank hours at my box office job. I’m hoping I can still work while I’m recovering, especially in the hospital when I’m scared I’ll be bored, but I am banking enough hours to cover me if I cannot work the week and a half I’ll be recovering with my parents.
During my pre-op appointments, I know that someone will go over with me some of the things I’ll need to bring with me for surgery and my hospital stay. I’ve never had inpatient surgery before, so I am a bit nervous about staying at the hospital. I’m a bit set in my ways and in my routine, and I know this will throw me off. I’m looking online at things that people recommend to have for overnight hospital stays or abdominal surgery recovery. If any of you have been through either, I would love some suggestions.
This have been moving pretty quickly after I got my surgery date. I have several appointments scheduled now, my parents have planned their trip down here, they have found a place to stay, and I’ve got a ticking clock in my head of how much longer I have. I’m sure that since I’ve got about 2 months to go that soon I won’t think about it as each day counts down. Eventually I’ll just have it in the back of my mind instead of the front of my mind.
The only downside with having some time to get ready is that I have time to get ready. I have the time think about what I want to do before surgery or to have with me in the hospital. I have time to do a lot of research and read the good recovery stories along with the bad ones. I have time to think about what this will mean for the rest of my life. Since they are taking out my gallbladder, my diet will need to change a bit. And for the time that my liver regenerates, I’m sure I’ll have a restricted diet too. And after surgery, I will have scars on my stomach for the rest of my life. The scars on my hip have faded to the point you can’t see them anymore, so maybe the ones on my stomach will do the same. But I will always know that they will be there.
I’m going to try to limit the number of posts I do about the upcoming surgery. I’ll do posts when I have updates or appointments so you all know what is happening with me. But this surgery is just a minor roadblock in my life. Once I get through it, things will be different but I will be fine. This is just another crazy story that I will be able to tell one day at a party (I’m sure saying I had a tumor the size of a baby’s head taken out of my liver will be a good cocktail party story one day).
I’ve got about 2 months to go before this is all pretty much behind me and I can just focus on recovering from surgery, getting back to my normal life, and moving forward.
It’s a new year and I’ve got a new year of monthly challenges! I did buy the Volt Planner for 2017 and I’m very happy that it’s a similar set up to what the 2016 planner was like. There are still the weekly and monthly goal setting pages as well as the monthly challenges. And I plan on doing a new monthly challenge each month just like I did last year!
I think that having the goals and challenges really did help to keep me accountable and focused on doing things to better myself. It’s one thing to say that I’ll be doing something, but to have a list in a planner where I can see what I set out to do is another. Having it on paper makes me want to make sure I don’t slack because I hate to see unchecked boxes on my goals and challenges pages in the planner. It’s the perfectionist in me that makes me want to get something done if I write it down in a planner.
I’ll admit that January 1st got here much quicker than expected so I didn’t have as much time dedicated to planning out my challenge for the month as I would have liked. There are some big ideas for challenges that I have for this year, but some of them involve planning or setting things in place that I didn’t have time to do for this month. Hopefully I’ll be able to do some of my big ideas later this year, but it will have to wait. But there was one thing that I started doing at the end of the year that I knew I wanted to continue to do this year and dedicate time to working on it.
While I know that I will need to have liver surgery no matter what, there are things that I can do to hope that the surgery and recovery will be easier. And one of those things is to have the tumors shrink. There is no medical way that I can do this (they aren’t cancerous tumors so I don’t need chemo or radiation to shrink them), but I can still work on doing it on my own. I’m a believer in the power of positive thinking and I’ve been trying to think that my tumors are shrinking every day.
My mom did the same thing when she had cancer, and her journey to being cancer free went much easier than most people thought it would be. She imagined her body healing every single night and I believe that doing that helped her so much. So I’m doing the same with my tumors. I had been doing this before the new year, but I still decided to make it my monthly challenge to make sure that I do this every day.
Like most of my challenges, I’m using the reminder app on my phone to alert myself every day to dedicate time to doing this. I’m not using my mediation app for this, but I’m thinking about doing that because there is a silent timed mediation option within the app. But for now, I’m just focusing on how I imagine the tumors getting smaller for a few minutes every single day.
It’s not a huge thing for me to do, but I know that doing it will only benefit me in the long run. And making sure that I do dedicate time every day for this will help me not to slack off and forget. I really do love having all the reminders in my phone going off throughout the day so I don’t zone out and then realize the entire day has gone by without me getting anything done. I feel silly that I hadn’t been taking advantage of those prior to the monthly challenges because they are so easy to set up. But at least now I have them and I am always adding more to my reminder list.
While this challenge is a smaller one, I’m really excited to have another full year of these challenges. From the ones that I set up last year, most of them are still things that I do every single day. I have slacked off on a few (mainly the yoga and mindfulness before eating ones but I’m working on that), but most of them have become habits and my day doesn’t feel complete until I accomplish them. And I know that building a few new good habits every year will add up and be something really great for me for the rest of my life.
Here’s to another year of monthly challenges and hopefully using my mind to get my tumors to shrink before my next MRI and we make my surgery plan!
I had an appointment with my therapist this week. Since I’m only seeing him every 6 months now, there have been a lot of things that I figured we would discuss. Obviously, we would be discussing my recovery but I knew there would be so much more to talk about in the appointment.
When I got called back, my therapist asked how I had been. My first response was to ask if he had seen my regular medical record because if he hadn’t there was a lot to update him on. He mentioned that he had seen some of it, but asked me to fill him in. So I gave him the story about the tumors in my liver and all of that stuff. It’s a lot to take in and I’m sure it sounds super overwhelming for someone who hasn’t heard it before. But to me, it’s not a huge deal and I can almost tell the entire story in a single breath. I’m wondering if it will seem like a bigger deal to me the closer to surgery I get, but for now I’m not thinking too much about it.
My therapist asked me how I was feeling about the tumors and if I was letting that affect my recovery, and I let him know that I was working on focusing on the positives as much as possible. Negative thinking isn’t going to change my situation, so I don’t see the point in wasting time on doing that. I’m going to have surgery and I’m trying to plan on making it as positive of an experience as possible (including telling all my friends that they have to come visit me when I’m in the hospital).
We also discussed the issues that I’m having right now with food. I’m worried a lot of the issues are related to hormones (or lack of synthetic hormones) and I just need to learn how to deal with this because this will be my reality for the rest of my life. I’m having more bad days than I would like right now, but I know that this is an adjustment period and it will get better. It’s unfortunate I have to deal with it, but again, thinking negatively isn’t going to help me at all.
My Vyvanse dosage was also discussed at the appointment. I’m getting close to having been on the medication for 2 years and I think we are finally at a good dose for me. I think it could work better if I was on a slightly higher dose, but I want to wait a bit to see if that is how I feel in another 6 months. I don’t want to keep increasing the dosage because there is a limit to how high the dose can be and I don’t want to keep increasing it until I get to that point. I’d rather be on the conservative side of things and increase them later.
We really didn’t have a ton to go over in the appointment. I am doing pretty great even though sometimes I don’t feel like that. My therapist feels that I’ve shown a ton of improvement over the time that I’ve been seeing him and he thinks that things are just going to get better and better. He said a lot of that has to do with me taking responsibility for bettering myself and not trying to depend on medication only. The fact that I’ve been doing monthly challenges are impressive to him and I think he’s still surprised that I’ve been keeping up with my happiness checklist.
But the thing that my therapist feels has been the most beneficial to my recovery so far has been my positive attitude. I rarely put myself in a victim mentality and I believe in the power of positive thought. Even though there isn’t any scientific evidence to prove this, positive thinking can do wonders for a person. You can do things that others may have thought to be impossible. I’m hoping that positive thinking will help my liver tumors shrink before my next MRI so that my surgery will be easier than expected. And in a few months I will hopefully see the results from that.
The positive thinking to get into recovery may take longer, but my therapist and I agree that those results will come for me one day. I just have to be patient and willing to wait it out until things get better. I’m happy to do that because I know it is in my future, but I do wish the timeline would speed up a bit!
The ending point of my therapy appointment was that I just need to continue doing what I’m doing. Thinking positively and looking at the good in situations is working for me and it will continue to work for me as long as I keep working at it. My next appointment with my therapist will be in 6 months, so that should be after my liver surgery. I hope that I will be able to update him that the positive thinking did a great job with getting my body ready for surgery!
And after all that discussion about positivity and good out there, I walked out of my appointment to see one of the most beautiful sunsets I had seen in a long time.
I’m taking that as a sign that good things are coming my way!
Like I mentioned yesterday, I had to stop taking my birth control pills because of my tumors. I’m still having a bit of pain from the IUD, but I know that will be ending soon and I’m so grateful that I’ve had an easier time than most of my friends. But as soon as I stopped taking my pills, my body was no longer on a steady level of hormones. And I’ve noticed that it is causing issues that I wasn’t expecting.
The first few days off of the pill were pretty easy. I was expecting things to be really horrible since I had been on the pill for 15 years. I know that a lot of people have pain and weird issues when you aren’t on regular hormones, but for a bit of time it seemed like I might have escaped that issue (I’m guessing all pain I’m feeling now is from the IUD and not stopping the pill). I’m still doing pretty ok with my hormones not being regulated and getting through the mood swings I haven’t experienced since I was a teenager, but I’ve noticed that it’s been causing problems with my eating disorder.
I have no clue if this is because my hormones are out of whack, I’m going through normal hormone fluctuations, or what it could be but my food situation hasn’t been great for the past 2 weeks. I’m having very odd cravings and I’m not able to ignore them. When I tried to ignore them, that brought on a binge eating episode so I’m trying to figure out what to do to handle the cravings but not let them get overwhelming. But they do get overwhelming from time to time and I’ve had to realize that maybe I have to accept this as a temporary situation.
A lot of the time, I can eat things that aren’t too horrible for me to handle the cravings. Lately, it’s been alternating between salty things (I eat saltines) or slightly sweet things (Cliff Bars do the trick). But those things both cause my weight to go up if I eat too much of them. And when I’m craving something, it’s so similar to a binge episode that I have trouble stopping it. I haven’t found alternatives that satisfy the cravings that aren’t as bad but I’m working on it. And I’m aware that these cravings can change over time so maybe in a few weeks I’ll be craving fruit or crunchy things like veggies.
It also doesn’t help that the day after getting my IUD, my scale went up 8 pounds. I know that it isn’t “real” weight but it was still distressing. The water weight will go down eventually, but when I’ve worked so hard to not gain weight it can be very upsetting to see the number higher than it should be. And I know that my body is extremely slow in losing water weight so it may take a lot longer than I would like. In the past, it would be a reason for me to say screw it and have a big binge episode. But I’m not doing that this time and hoping that my body settles down soon.
Since stopping my birth control pills and getting my IUD were so close together, it’s tough to know if things are caused by one or the other. I’ve been told it can take 3 months or so for your body to regulate with the IUD (and technically even longer to regulate after being on hormonal birth control pills). While this is the time that I wanted to work on my health to prepare for liver surgery in the spring, those months may just be trying to stay right where I am and getting through whatever my body has to go through to be normal again.
I have an appointment with my therapist next week, and I know this will be a lot of what I will be discussing with him. I’m hoping that he can give me some tips or guidance on how to deal with this and not have it delay the progress I’ve been making so far. I don’t know if he is able to see my full medical record, so I’m planning on filling him on everything with the tumors and all. Hopefully giving him the full picture of my physical health situation can help him help me with my mental health situation.
While I wish that I didn’t have the tumors and I was able to stop my birth control pills on my own timeline, this is probably a good thing. I’ve been on the pill for a very long time and while my time before it was pretty horrible with my hormones there’s a chance I’ve outgrown a lot of the issues I had before. Not having the hormones in my system could be a benefit for my eating disorder. It can be temporary that I have crazy hormone fluctuations but once things normalize I should be able to know when my binges may be more likely to happen. And then I can plan to try to prevent them. This is going to be a long haul journey, and while the beginning has been rocky I hope that in the end it ends up being a really great thing for me and my journey to recovery.
Warning for my readers (especially the guy readers): This post is about my experience getting an IUD. I’m not shy describing stuff so just know that if you read today’s post.
With the liver tumors, there isn’t much for me to do between now and my next MRI in the spring. I just have to hope that my body will decide the tumors should shrink so things will be easier. I don’t have to change pretty much anything in my life because of them with one exception. I had to stop taking my birth control pills.
I’ve been on the pill since I was 18 and it was weird to stop taking them. But knowing that the hormones in them were what caused the tumors (literally a one in a million complication) made it a non-negotiable thing for me to stop. Ironically, I had to stop hormonal birth control but right now pregnancy could be extremely dangerous. I needed something to make sure I won’t get pregnant before my surgery (even though that is not really a concern for me), and non-hormonal options are pretty limited. But since hormonal options will be out of the picture for me for the rest of my life, I figured now is the best time to figure out what I want to do.
I have a very open relationship with my family. It helps that my dad was an OB/GYN and there is no shame or embarrassment to discuss things with him or anyone in my family. And everyone in my family agreed that I should get an IUD. Several women in my family have them and love them. And since there is a non-hormonal option (the copper Paragard), my OB/GYN agreed and scheduled me a time to come in and get one. While getting an IUD was something I thought about doing for a few years, I wasn’t too happy about having to get one. This wasn’t totally my choice, but I knew it was the best thing for me.
Of course, I reached out to all the friends and family I know who have an IUD to ask them about their experience. Mainly, I was terrified about the pain I might have with the insertion. I’ve read it can be very painful when you haven’t had a baby yet and I’m not a fan of pain. But since my OB/GYN knew how scared I was, she prescribed me some things to make it easier. I already have prescription motrin for my hip, but she also wrote a prescription for 1 dose of Valium to keep me calm and 2 doses of Codeine to help with the pain before and after.
Since I was going to be pretty loopy going to my appointment (I had never taken Valium before so I had no clue how I’d react), I had a friend who has an IUD drive me. I knew she’d be able to help keep me calm and would be a good person to have with me after if I was in a lot of pain. So this week, I had my appointment and I wanted to share my experience because I think it is important for people to know what it is like.
I took the painkillers about an hour before my appointment and felt fine with them. I’ve taken those painkiller before and knew I wouldn’t have any weird reactions. But when I took the Valium, I got loopy right away. I was shocked how fast it got into my system but was grateful that it did calm me down significantly. But when my friend picked me up, I knew I was acting weird. My brain and mouth felt disconnected and I couldn’t get out what I wanted to say. I was slurring (my friend said I sounded drunk or someone who was in the middle of dental work) and I couldn’t think of words that I wanted to use. I don’t like being out of control like that, but I knew it was for the best.
I was still nervous when I got to the appointment, but fortunately my OB/GYN is a family friend and was willing to work on making this as easy as possible. After doing a pregnancy test (they are required to do it even though I knew there was no risk of me being pregnant), my OB/GYN decided that the best option would be for me to get a shot of lidocaine. Most OB/GYNs don’t do this because getting a shot in your cervix can be very painful and can be worse than the IUD insertion. But for me, I didn’t really feel the shots. I didn’t know she did the first one and for the second one I didn’t feel pain but did feel a slow mild shock going up one side of my abdomen (it was on the side that the shot was going in on my cervix).
After the shot, we had to wait about 5 minutes for it to take effect, so we were just chatting and catching up on random things. I also told my doctor that I was totally going to be blogging about this so she took the IUD out of the box so I could get a picture of it before it went inside me.
You can see that the IUD is pretty small. The device it is in is the thing that is used to put it in your uterus (the arms get folded down before insertion, but I wanted the picture of it before it got folded down). Even though I knew IUDs are small, seeing it before the insertion did make me feel better. I don’t know why I needed more reassurance, but knowing that it was tiny and the device to insert it is smaller than a straw was good.
After I was numb, the next step was to measure my uterus so my doctor knew how far to insert the IUD. They used a device to hold my cervix open, but I didn’t feel it at all. I thought I might feel some pain or pressure, but when my doctor told me it was on there I was shocked because I had no idea. When she used the sounding device to measure my cervix, I felt that a bit. But I only felt it when it hit the top of my uterus and it was a little pinch (less than a shot or needle stick for an IV). I jumped a bit when that happened, but again it was significantly less than I thought it would be.
Finally, it was time to get my IUD. The IUD is loaded up in the insertion device and then it was placed in my uterus. I didn’t feel it at first, but as my doctor was placing it and getting the arms to pop out that was a weird sensation. I don’t know how to describe it. It wasn’t painful but it was odd. It almost felt like something was trying to pull my insides out of my body. It lasted maybe 3 seconds and then it was done. Then my doctor trimmed the strings of the IUD (I felt nothing) and the worst was over.
The final step was having an ultrasound to make sure the placement looked good. My doctor turned the screen so I could look at it too and she pointed out where the IUD is and where my uterus and ovaries are. It’s not easy to see in the image, but the long straight line in the center is the IUD.
The placement looked good to my doctor and we were done! If you don’t count the 5 minutes we waited for the lidocaine to take effect, the entire thing was probably less than 3 minutes. And I’m aware I had more painkillers than most people and I got the lidocaine shot too, but this entire process was pretty close to painless. Getting an IV for my liver MRIs were more painful than this process.
I have to go back to my OB/GYN in 6 weeks to have the placement checked again, but if everything looks good I’m protected against pregnancy for 10 years! There are no hormones in the copper IUD so it won’t affect the tumors at all. And if I want to have kids within the next decade, it’s pretty easy to have this removed.
I know that most people have much more difficult experiences than what I had. Even after the lidocaine wore off, I wasn’t in much pain. I have a small cramp in my lower abdomen, but it’s a pretty dull pain. I am still taking motrin as a precaution and after getting the IUD in I used a heating pad that night. But this was not unbearable at all. I know this could get worse later, but I’m not too worried about that. The thing that scared me the most was the insertion and I was laughing after it was done about how easy it was. If I had known that before, I probably would have gotten this years ago.
While I still wished that this was more of my choice and not something that was my only option, I’m glad I did it. I’m glad that I was able to manage the pain with the options I was given and that the experience was easy. All of the stress and worry I had before was so much worse than anything I experienced in the appointment.
I want to thank everyone who shared their stories of getting an IUD with me when I reached out for advice. You were all right that it wasn’t bad and that I was worrying more about it than I needed to. And if you are considering an IUD, know that while it can be painful that pain is usually over pretty quick. And maybe you will be lucky like I was and have an almost pain-free experience. Feel free to reach out to me through the comments or the contact form if you have questions or want to contact me about this. Obviously I’m an open book and happy to share whatever I can with you all.
It’s been an interesting adventure so far with my liver. In the past month, I’ve gone from thinking my liver was fine to thinking I had a cyst to finding out I had a tumor. Since I had no symptoms of the tumor, I’ll admit I was pretty shocked to find out it existed. But I was set up with a great medical team and my doctor has been very persistent in trying to figure this all out.
Before Thanksgiving, I went in for another MRI. This time, it was a different type of dye they used so they could figure out what type of tumor was in my liver. I knew I’d be meeting with my liver surgeon the Monday after Thanksgiving so I assumed that I would find out answers then. But on Wednesday before Thanksgiving, I got a call from my OB/GYN (who was trained by my dad and has known my family for a while). She told me she had been following my medical records and saw that there was a report about my last MRI.
They officially declared that my tumor is an adenoma. This is the type of tumor that is a rare side effect from being on hormonal birth control. So my OB/GYN called me to tell me to stop taking my birth control pill because we didn’t want the tumor to get any bigger. She also told me on the call that they actually found out I have 3 tumors in my liver (the big one plus 2 small ones). She was able to send me the MRI report so my family and I could read it and she also talked to my dad to fill him in. We learned a lot by reading the MRI report (thankfully I have so many medical people in my family), but we were all still curious what the liver surgeon would say.
When I finally met with him on Monday, he pretty much agreed with everything we already heard. Yes, I have 3 tumors and they are all adenomas. He was happy to hear that I had already stopped my birth control and he explained my options. I could choose to not have the tumors out, but there is a very small chance that one day they could become cancerous and a larger chance that they could rupture and cause internal bleeding. Also, I could not get pregnant while the tumors are in there (pregnancy makes the tumors bigger and more likely to rupture). Or I could choose to get them out and have liver surgery that will take out 2 of the tumors (one isn’t in a spot where they could remove it right now) and then deal with recovery from surgery.
That large circle with the line through it is the tumor. It’s pretty large (almost the size of an iPhone) and covers a good portion of my left liver. The other tumors aren’t seen in this image but one is below the large tumor and the other is more toward the middle of my liver.
To me, it’s no question. I’m going to have surgery to get the tumors out. Even though the risk of the tumors becoming cancerous is very very small, I don’t want that risk (the chance of me getting these tumors to begin with was very small so I’m not a fan of odds right now). Also, I do hope that one day I will be married and want to have kids so I need the tumors out to have a safe pregnancy in the future.
Fortunately, nothing needs to be rushed right now. I’m not at a very high risk of rupture for the tumors (although I have been told to be careful with any trauma to my abdomen) and I don’t plan on being pregnant anytime soon. I was able to make a plan with the liver surgeon that I’m happy with right now. I need to stay off the hormonal birth control so we can see if the tumors will shrink at all (and I’ll be getting a copper IUD very soon to make sure I don’t get pregnant). In the spring, I will be getting a new MRI to see if the tumors are smaller and then I’ll meet with the surgeon.
And sometime in late April or early May I will be having my liver surgery. They will take out those 2 tumors (and maybe if the tumors shrink they can take out all 3) plus about 25% of my liver. And since I already need to have my gallbladder out, they said they could probably do that in the same surgery! I’m happy to know that I can do 2 surgeries at once.
It’s not an easy surgery to recover from. This will be much more difficult than my hip surgery or my tonsils coming out. I’ll need to stay at the hospital for a few nights and will take some time to get back to normal. And even though my liver will grow back (it’s one of the few organs that can do that), that will also take time and may be a bit uncomfortable or painful for a few months.
Even with all the negatives that the surgery may bring, I feel very confident in my choice to have the tumors out. I understand that I don’t have to do it, but in my mind having the surgery is the only reasonable option. Unless something crazy happens, I probably won’t have any more liver updates until my next MRI in the spring, but I promise to keep you all updated. One thing I’ve learned while researching liver adenomas is that there aren’t a ton of stories out there like mine. So I want to share the journey in case someone else has the same situation to help them feel less freaked out by it all.