Tag Archives: liver

A Boring Tumor Check In (or Still A Miracle)

Posted on October 24, 2018 | Comments Off

This week I had my appointment with my liver surgeon. I had my MRI about a week ago and this appointment was mainly just to confirm that everything is still ok with me. When I saw my surgeon a year ago, I was just so grateful to know that the shrinking tumors wasn’t a fluke. I was pretty nervous about things leading up to the appointment because I felt like things kept changing every appointment. But now, things seem almost routine (or as routine as they can be when you have multiple non-cancerous tumors in your liver).

Before my appointment with my surgeon, I had the text copy of my MRI report. When I first learned about my tumors, there were 3 of them. Last year, they could only see 2 of them. These tumors will never go away completely, but they can get so small that they aren’t seen on a scan anymore. And this time, I still only had 2 tumors in my report and they were even smaller! Last year, my surgeon mentioned that getting all my tumors under 3cm was a goal to have in mind because it makes some things less risky for me. And at that appointment last year the biggest one was just over 3cm. But according to this new MRI report, it was under that! So I was pretty excited to see my surgeon and hear what he had to say.

I’ve said this before, but I am so lucky with my liver surgeon. He is very upfront and honest about things with me, but my appointments also feel very casual and almost like a novelty. He’s not used to having patients who have shrinking tumors, so I think he is entertained by my case. And that’s fine with me because I’m pretty entertained by it too! And I think having these appointments feel so calm and casual has helped me relax about a medical situation that could be very scary.

He knew that I already saw the text to my MRI report so he confirmed what I read. My largest tumor, which started at about 10cm, was now 2.2cm. My smallest tumor is still not seen on the scan. And the medium-sized tumor had a little decrease in size from 1.1cm to 1cm (but that one started at 3cm). When we watched the images from my MRI, the biggest tumor looks so tiny in my liver now!

It’s also still completely inside my liver which is a good thing. When we discovered it, the tumor was half inside and half outside my liver. It was hanging off (as my surgeon likes to put it, it was hanging off like a bunch of grapes) and that was a very risky and dangerous thing. If the tumor broke off my liver, I could have had massive internal bleeding. It’s a big relief to know that not only is the tumor smaller, but that it is still completely inside my liver.

After looking at the images, we discussed the plan. There isn’t a big plan since this is still an unknown situation for my surgeon, but this is all good news. We discussed my future and what things can be riskier for me and what is now safe that the tumors are smaller. If in the future I need fertility treatments, they are an option for me now but I will need to be monitored. The same goes for if I’m pregnant in the future. I will still be high-risk, but it’s not as dangerous as it would have been before. Unfortunately, hormonal birth control is still too risky for me so I can’t go back to how things were before. But if that’s the only thing that is too risky for me, that’s not that bad.

We also discussed my future monitoring. My surgeon said if I wanted to have MRIs every other year instead of every year, we could do that. While I don’t love having MRIs, they aren’t the worst thing for me anymore. So I told him that if he wanted to do annual scans I would be ok with that. So he decided that I would have another MRI in a year and then we would reevaluate the plan in a year. And of course if anything changes or I have something happen, I can let him know and I can have a scan and appointment sooner. But I don’t expect anything to happen that would make me need to go in sooner than a year.

This seriously was such a normal and almost boring appointment. Nothing that big was said beyond confirming my tumors are shrinking. It’s so weird to think about how 2 years ago when I learned about the tumors everything seemed so crazy and hectic. I felt like a lot of things were happening quickly and was just trying to stay calm. Now, only 2 years later, seeing my liver surgeon was one of the easiest and least stressful doctor appointments I’ve had. The only weird thing we went over in my appointment was about the gallstone I currently have. It’s one large gallstone that is bigger than any of my tumors. But it’s better to have one big stone compared to a bunch of little ones. But we discussed that if I do have gallbladder issues again that he can take it out for me and take out the largest tumor as well. But I’m not expecting to need that soon. I haven’t had a gallbladder attack since the tumors shrank and that’s probably because the tumor was distorting my liver and pressing on my gallbladder. Now that the tumors are smaller, my gallbladder isn’t affected the same way.

So that’s really it from my appointment. There weren’t any big things discussed and the plan is to do another scan in a year. But there is no reason to expect that my tumors will grow again in the next year. I know there is a chance they won’t shrink anymore, but we aren’t expecting them to grow since they haven’t done that in any of my scans. Since discovering them 2 years ago, every scan has shown them getting smaller.

It’s been a crazy 2 year journey so far! I went from discovering I had tumors and needing surgery in October 2016, to finding out the tumors shrank in April 2017, to having them continue to shrink in my October 2017 scan, and now they’ve gotten even smaller!

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Tagged doctor, health issues, liver, tumor

Getting Ready To See My Liver Surgeon Again (or My Annual MRI)

Posted on October 18, 2018 | Comments Off

It’s crazy to think that it’s been a year since my last liver MRI. It seems like it wasn’t that long ago, but that might be because I do think about my liver tumors from time to time. I don’t dwell on them, but they are in my mind and I try to make choices that are good for my liver. I know that drinking and eating certain foods can’t hurt or help my tumors, but I have no idea why my liver is able to shrink these tumors on its own. So I try not to do anything that will stress my liver out so it can work the best it can.

At the same time, tomorrow marks 2 years since I learned there was something potentially wrong with my liver. It feels like I’ve been dealing with my liver story for much longer than 2 years! But I guess it’s just because it was such a huge focus of my life for 6 months before my miracle. And for my 2 year anniversary of discovering the tumors, I had another MRI to check in on them.

While I’ve had issues before with needles, things went better than expected when I had my blood drawn to check my kidneys before the MRI. But I was still nervous about the needle for the IV as well as how I would feel being in the MRI machine if I wasn’t feeling my best. The morning of the MRI I was having lower nausea than the days before, but I still took some medication to make sure I wouldn’t get nauseous or have too painful of cramps when the tests were being done. I know that staying still is so important in an MRI and for most of the images I need to hold my breath. So I wanted to be in the least about of pain and nausea possible.

The MRI was running behind (which I expected so I had my book with me), so while I was waiting I tried to stay hydrated so the IV would be easier to get in and just relax. I wasn’t focusing on what was coming up, just on what was happening in that moment so that I could stay calm. They ended up not running as behind as they thought so before I knew it I was in my hospital gown and ready to go.

They did the IV in my arm after I was already settled on the bed of the MRI machine. That was fine with me since I would already be laying down in case I passed out. I had a feeling I wouldn’t faint because it’s been so long since I actually fainted (versus blacking out where I can still hear things around me), but I like to be prepared.

Even with all the issues I’ve had with needles, it’s usually a quick process. I can’t remember the last time I needed multiple attempts at an IV or blood draw. I know that several years ago it too multiple shots to numb me before dental work, but that’s different. And for some reason, it took 3 tries to get my IV in. I tried not to be annoyed by it, but it was painful and by the third try I was feeling a bit off. But it finally worked and they were ready to get me into the machine for the MRI.

I’ve had enough MRIs over the past few years to know what to expect. It’s not the most fun thing to do, but it’s not bad. I know things could be much worse so I feel lucky that my MRIs are usually a quick process. Since we are only doing a check to see the size of the tumor (when I had my first ones it was to diagnose what it was), it’s usually only about 30 minutes inside the machine. I’ve got random things I think about to pass the time and I usually count the weird noises when I have to hold my breath. Some of the scans seem to take forever and I can’t hold my breath that long, but I really try my best to wait until I am instructed to relax.

A majority of my MRI is done with no contrast in my body. The last 2 or 3 scans are done after the contrast is put into my IV. In the past, the technicians have warned me when they were going to start the contrast. It’s not painful, but it’s cold and a very weird feeling. I can feel it in my toes even though it starts in my arm. And you do feel it moving in your body. It’s just an uncomfortable feeling for a few seconds, but nothing I can’t tolerate. I don’t know why they didn’t warn me this time, but they didn’t. So I was a bit surprised when the contrast started but I also was grateful that meant that the MRI was almost done.

When they got me out of the machine, they got my IV out which was again painful. I don’t know why my skin was so sensitive, but it was. I ended up having a bruise in my arm where the IV was, but it faded after a few days and it wasn’t as sore as a normal bruise. I guess it’s just my battle scar from the MRI. I think I was trying so hard to not feel nauseous in the machine that it did come at me when I was getting dressed and ready to leave, but I knew I’d be home soon enough and could do more things to feel better.

I see my liver surgeon next week, but I’m not expecting it to be that exciting of an appointment. As long as my tumors aren’t growing, we aren’t going to do anything. I still may get them out one day even if they don’t grow, but that would be in combination with me getting my gallbladder out in the future. But since I haven’t had a gallbladder attack in a few years, I have no idea if I even need to do that anymore!

Even though last year I got great news and was told I didn’t need to worry about anything for a year, it still felt so connected to the stress of learning about the tumors and planning for surgery. Now that I’ve had another year removed from it, I finally feel like I might be back to normal again. I know that I will likely need to be checked from time to time, but it now feels like a check and not preparation for something big.

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Tagged health issues, liver, MRI, tumor

Medical Miracle Anniversary (or A Year Of My Liver Being A Badass)

Posted on April 20, 2018 | 1 comment

1 year ago today I was supposed to have my liver surgery to remove my tumors and about 30% of my liver. And as you know if you’ve followed my blog for a while, that surgery didn’t happen. Even though the research shows that the type of tumors I have don’t typically shrink on their own, somehow mine did. The tumors were caused by hormonal birth control and I guess going off of it made the tumors smaller. I’ve done some research on my own and it seems like even though this situation is still very rare, it is a bit more common than we previously thought.

For my hip surgery, it’s easy to know what the anniversary is because it happened on a certain date. For this medical situation, it was a bit tougher to pick what my anniversary date would be. There was the date when my OB/GYN called me to tell me my MRI results were in and the tumors shrank. At that time I only knew the tumors shrank and that it was almost unheard of that happening. She didn’t know what was the next step and I assumed I might still be having surgery. Then there was the phone call I had with my liver surgeon that happened 2 days before I was supposed to go in for my pre-op appointment. That was when my surgery was officially cancelled and I knew that I was a medical miracle.

But to me, I think I want to consider my non-surgery date as my medical miracle anniversary since it is the anniversary of my surgery not happening. It’s also an easier date to remember because I have to look back at a calendar to figure out what dates I got the phone calls from the doctors. And the surgery date was ingrained in my head while I prepped for it so it will be hard for me to forget it. So that mean today marks my 1 year anniversary of being a medical miracle.

It’s weird to think that 1 year ago I would have either still been in surgery or in a recovery room recovering from a major surgery. While I was looking forward to the surgery because I knew that I needed it, I’m much happier that I didn’t have to deal with a very long recovery from a major surgery. While I’ve had a few surgeries in my life, this would have been the biggest one and the first time I would have been in the hospital overnight (I would have been there for multiple days and nights to recover before going home).

When my surgery was initially cancelled, I did have a bit of a struggle because it felt like something in my life was unfinished. I also felt a bit out of control and disconnected because I had no sense that this was happening with my body (both the tumors existing and the tumors shrinking). It took a while for that feeling to go away, but now I’m just so grateful that I was lucky enough to not need a major surgery. As much as I prepared for that recovery, I know that there really isn’t a way to prepare and I was worried about how painful it might be and what my body may not be able to do for a while. I’m glad I didn’t have to have those worries but instead just got to enjoy a long visit with my parents instead of being in the hospital.

Since my medical miracle, there has been very little I’ve had to do with my liver. I am still limiting my drinking since I know alcohol can stress my liver (and I doubt stress is good for it). I’m taking some supplements for liver health because I figured it can’t hurt to do that and it’s not expensive to take them. And while I don’t have to worry about the tumor breaking off and causing me to bleed internally as much as I did before, I’m continuing to be cautious of not bumping my stomach into anything and avoiding any trauma I can to my abdomen.

I had an MRI 6 months after the miracle because my surgeon had no idea what really would happen with the tumors. The hope was that they would continue to shrink, but there was the possibility that they would either stay the same or grow and that would have led to me needing surgery. Fortunately, they did shrink a bit more (but not nearly as significantly as they did previously) and my surgeon and I went over what the plan would be. The plan is pretty limited as this is not the normal path, but basically I’m just continuing doing what I’m doing and then I’ll have another MRI in October (1 year from the most recent MRI).

Even a year later, I still think I’m a bit shocked about how this all turned out. Discovering I had a tumor was pretty dramatic with a full day at the hospital. Discovering what type of tumor I had and how large they were was pretty crazy too. And then being a medical miracle and having my surgery cancelled is something I never believed could happen. Even though my family always believes in the best for medical situations, my tumors shrinking to the point of my surgery being unnecessary didn’t really enter any of our minds. Hopefully the dramatics with these tumors is done now and my next MRI and all future ones will show the tumors shrinking. I guess I’ll find out in 6 more months.

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Posted in Fun Stuff, Health

Tagged doctor, health issues, liver, miracle, surgery, tumor

Tumor Update Time! (or Guess I Won’t Have Another Of These For A While)

Posted on October 18, 2017 | 3 comments

As I mentioned in my post about getting my most recent MRI, I already knew that my liver tumors had shrunk again. That’s awesome news and I was so happy to hear that since if the tumors had grown or stayed the same I might have needed surgery. While I was mentally prepared for surgery since I thought I was having it earlier this year, I really don’t want any surgeries if I can help it. But even though I already had that good news, I didn’t know too much about what was happening which is why I met with my liver surgeon this week.

I actually hadn’t seen my liver surgeon in almost a year. I didn’t realize it had been that long, but the last time I saw him was after my second liver MRI (when we determined what type of tumors I had). After my MRI in April I didn’t see him since we had a phone call instead of me spending money for an appointment. He didn’t have a ton of answers for me then except that we should not do the surgery then because my case is pretty unique. So I was happy to see my surgeon again to discuss the plan and see what he thinks is going on.

I seriously have an awesome liver surgeon. I was randomly assigned him after it was discovered there was something happening with my liver, but I couldn’t have picked a better doctor. He totally gets that I want photos of my tumors, sends me the full radiologist report, and doesn’t mind that I always come in with a list of questions. And he talks to me normally (not talking down like some doctors do) and I think he is honestly entertained by my case since I’m so weird. In this past appointment, he said how he read about a case like mine in school but never thought that he’d get a patient with shrinking liver adenomas. I’m happy that he’s excited about what’s happening too.

This appointment was pretty easy. I already knew that the tumors shrank and he knew I’d want a bunch of photos of the screen showing my MRI so he set it up where we could see a side by side comparison. I did some editing since I know not everyone knows where the tumors are in my scans, but as you can see it’s pretty clear that the tumor is significantly smaller than it was a year ago.

In October last year the big tumor was 10cm, in April this year it was about 4cm, and this month it measured at just over 3cm. The smallest tumor is still gone (or too small to be seen on a scan) and the medium tumor is 1cm (it started at 3cm and measured at 1cm in April). My surgeon said that I’m in a pretty good spot now. He doesn’t recommend surgery for me since the tumor is small enough to not be a risk for me and the placement of it now has improved. There are still risks of it growing if I am pregnant one day, but he said that he isn’t worried about it.

We discussed options to get rid of it. There are some less invasive options than surgery, but because of the placement of my tumor they aren’t things I can do. My tumor is pressed against my stomach so anything like radiation or burning the tumor would risk injuring my stomach. The risks of those procedures outweighs the benefit of taking out the tumor. But we did talk about how there is a chance I’ll still need my gallbladder out one day and he said we could easily do the tumor removal at the same time. So now I know that whatever comes first (needing the tumor out or my gallbladder out) will also make the other surgery happen at the same time. I kind of like the idea of a 2 for 1 surgery.

We also discussed things for my future. Pregnancy is no longer as risky for me as it was when the tumors were larger and I pretty much knew that already. But in the past my surgeon mentioned that fertility treatments and hormone replacement therapies would not be an option for me because of the tumors. But this time, he said since it would be such a small procedure to take the tumor out, if I needed either of those one day I could just have the surgery to take out the tumor and then I could do them. I was not expecting that and it actually was a relief to hear that. I hope that I don’t need fertility treatments, but I’m aware of how many of my friends have issues getting pregnant (and I’m not getting any younger) so it’s nice to know that is an option if I need it. And I know that many women really have relief from menopause from hormone replacement therapy so it’s good to know that could be something I could use if I need it.

Besides discussing those few things, there really wasn’t much else to talk about in my appointment. There is still no medical explanation for why the tumors shrank when they usually don’t. I think it’s my visualization work that is helping do this. But there is nothing that my surgeon can tell me that I need to do or keep doing so my plan is to not really change anything. Since we don’t know what is doing this, I don’t want to change something only to discover that is why things are working.

Since there is no plan to have surgery (at least not until I need my gallbladder out), my surgeon told me that if I didn’t want to do any more follow ups I didn’t have to. While that’s a nice idea, I don’t think I would be able to not be worried about the tumors. So the plan now is that I will do another MRI in a year and we will have another chat about what’s happening. Hopefully the tumors are smaller in a year, but even if they aren’t I know they are an ok size right now.

It was weird enough to not have to do any liver related stuff for 6 months after my surgery was cancelled, but to be able to go a year without anything is even crazier! But I have no reason to worry about anything and now I get to work on hoping to continue to be a medical miracle and hopefully my appointment in a year will go as easily as this one did!

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Posted in Fun Stuff, Health

Tagged doctor, health issues, liver, surgery, tumor

Time For Another MRI (or Still Trying To Stay Calm)

Posted on October 12, 2017 | 3 comments

After a busy weekend at the SAG-AFTRA Convention, I was ready to relax. But that wasn’t exactly what was in the plans for me. I had my liver MRI the next day and that’s not exactly the most relaxing thing for me to do. But at least it’s something I’m getting used to. I’ve had several liver MRIs by now and I know what it’s like. And even though it has been 6 months since my last one, I knew what I was in for.

This MRI was to check the tumor sizes. I have an appointment with my liver surgeon on Monday next week to discuss what the plan is going to be. But in order to do that, we need to know what is happening in my liver. So even though this was probably the most routine of my liver MRIs, it was also the most stressful for me. My first MRI was when we still thought I had a cyst and I didn’t know enough to be stresses. My second one was to determine what type of tumor I had and I knew it didn’t make too much of a difference what type it was. My third one was right before I was supposed to have surgery and was just a size check (I assumed that surgery was going to happen so I didn’t think too much about the size). But this one is to see what is happening so we can create a plan.

I tried not to stress too much about things because I cannot control if my tumors shrink or grow. Whatever happens is going to happen and I can’t worry too much. But at the same time, because I have no clue what is going on it is stressful. I want the tumors to keep shrinking because I really don’t want surgery. But I also know that if I do need surgery eventually that it will be the right thing for me.

So going in for this MRI was a mix of stress and exhaustion. I joked to friends that maybe I’d actually sleep in the MRI machine. That really can’t happen because there are audio cues I have to listen to about holding my breath at certain times, but I was hopeful that at least being tired would help keep me a bit relaxed. When I got to the hospital, they were running almost 2 hours behind so I spent a lot of time in the waiting room reading a book. But they ended up bringing me back early to get ready before the MRI machine was ready.

One part of getting ready was getting the IV started. They wanted to do this with me sitting on a chair and I was terrified. While I haven’t really fainted lately with needles or blood work, I was worried that the IV would make me pass out for a bit and didn’t want to fall. We ended up doing it with me sitting on a bench and leaning against the wall and I am happy to say that I didn’t faint with the IV! And then I found out that the new rules for the MRI machine meant that I couldn’t wear my own clothes and had to get gowned up. So I got changed and waited for the machine to be ready for me.

There was still more waiting once I was ready so I tried to just read my book and not think about the MRI. I was still a bit distracted and worried, but at least the reading gave me something to focus on a little more than the MRI. And once they were ready for me, I got on the table and they were able to get me positioned and strapped down (yes, you get strapped down for liver MRIs) quickly.

The MRI was only about 20 minutes since it was only a size check. I tried to count in my head during each scan and not think about what was happening or what they might be seeing. I still don’t really like MRIs and whenever the machine moved I got a bit panicky. But I stayed calm because I knew I needed to hold my breath several times and it’s not easy to do that when you are panicky.

When the contrast went into my IV, it felt as weird as it always has in the past. I hate that feeling and it did make me feel a bit faint, but I kept it together. And after the contrast went in, there is a 4 minute gap before the next scan so they were able to take my IV out so I could finish the MRI without the IV in my arm. That was nice and I’m grateful that they do that for me. And after those last few scans, it was all done and I was released from the table and was able to get changed and on with my day.

But I wasn’t done just yet. Because things were running so far behind and you have to pay to park at the hospital I go to, I decided that I was going to take advantage of something they were offering. If you got a flu shot, they gave you parking validation to cover the cost of parking that day. My parking was going to be about $20, so I figured this would be the perfect time to get my flu shot and to not have to pay a lot for parking. I got it, didn’t pass out, and got free parking. Totally a win (except that my arm is still a bit sore).

I have my meeting with my surgeon on Monday, but I already got an email from him. I don’t have all the details, but I do know that my biggest tumor has gotten a bit smaller! When it was discovered a year ago, it was 10cm. When we did the MRI in April it was about 4cm. And in the MRI this week it was about 3cm. I don’t know about the other tumor or if the 3rd one is still not able to be seen, but this is big news! I’m assuming this means that I still won’t be having surgery, but I don’t really know much more than the size just yet. But I’ll be updating you all when I know more!

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Tagged calm, health issues, liver, MRI, tumor

Back To Focusing On Health (or Back To Back Doctor Appointments)

Posted on August 30, 2017 | Comments Off

In some ways, it seems like I took the summer off from my health. The last big doctor appointment I had been not really an appointment at all but my MRI for my liver back in April. I never saw my liver surgeon after the MRI, we just had a phone call that went over most things plus some follow-up emails with some blood work instructions. And I did get my eyes checked this summer, but that was something I had been putting off and wasn’t that big of a deal.

But now, it seems like doctor appointments are coming quickly for me. Some of them have been normal things. I had an appointment with a dermatologist recently and will be going back for a follow-up in a week. That’s something I pretty much do every year. And yesterday was my annual appointment with my OB/GYN, which is another pretty normal appointment. Although it does seem like I’ve seen her a lot lately since I had my IUD appointment and follow-up for that not too long ago. Again, seeing my doctor every year for my annual appointment is very routine for me.

And I’m assuming I’ll be going in for a mammogram again this year, which isn’t the most fun thing but I know I need to do it. It’s funny how a year ago I was so stressed about having a breast MRI because I hate IVs and don’t love MRIs. But since that MRI, I’ve had so many with IVs so now that seems like the easier option. But it’s much more expensive and not necessary for me to do every year. I don’t know how often I’ll be alternating the mammograms with the MRIs, but that’s something that will be worked out for me by my doctor and a geneticist that my doctor consults with.

But even though it seems like all the routine doctor appointments are coming at me quickly, I also have to add in my liver stuff too. I will be doing my next liver MRI in the next month or so and then I’ll have the follow-up that goes along with that. Obviously, my hope is that the tumors have continued to shrink so that I can just keep doing what I’m doing and hopefully I’ll just have to do another follow-up MRI in 6 months. If they keep shrinking or disappear completely, there’s a chance I’ll still have to do semi-annual or annual MRIs, but that’s not that bad. I could deal with MRIs every month if that meant I didn’t need to have surgery.

But of course, there is always the worry that the tumors have grown or stayed the same. If they are the same, I’m in a weird spot because I still could benefit from surgery but I could also wait longer to see if they shrink again. To me, having them stay the same is the worst case because there’s no clear answer on what I should do. And if the tumors have grown, I need to have surgery and that’s that. I don’t want surgery, but I also don’t want tumors in me that are growing because that can turn life threatening.

I’ve been doing my tumor visualization every day and I haven’t really changed much in my routine since I found out my tumors have shrunk. So I’m really hopeful that the tumors have shrunk. But I’m back to feeling a bit disconnected to my body since there is no way for me to know what’s happening until I have the MRI. I’m not going to stress about it because there is nothing I can do beyond what I’m doing. And if my MRI ends up being in October, I don’t want to spend all of September stressed about it.

It’s interesting how the timing of things worked out where it was pretty much a summer off of medical stuff. Considering how much medical craziness I’ve had lately, it was nice to have a break so I could focus more on my life and not on the what ifs with my body. But it’s time to buckle down and get back to making sure that I’m doing everything I can for my health and to make sure that I’m on top of all the things I need to concern myself about.

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Posted in Health, Tough Stuff

Tagged doctor, health issues, liver, tumor

A Tumor Miracle (or I Wasn’t Expecting This)

Posted on April 13, 2017 | 11 comments

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!

11 Comments

Posted in Fun Stuff, Health

Tagged doctor, health issues, liver, miracle, positivity, surgery, tumor

MRI Time (or I Think Being Calm Is Helping)

Posted on April 7, 2017 | 2 comments

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!

2 Comments

Posted in Health, Tough Stuff

Tagged doctor, health issues, liver, MRI, surgery, tumor

Surgery Shopping (or How To Prep For The Unexpected)

Posted on April 6, 2017 | 1 comment

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!

1 Comment

Posted in Health, Shopping, Tough Stuff

Tagged health issues, liver, panic, shopping, stress, surgery, tumor

Not What I Want To Weigh (or About A Month To Go)

Posted on March 15, 2017 | 2 comments

As soon as I knew I’d need liver surgery, the first thing I thought about was wanting to lose weight before surgery. I know that at a lower weight the surgery will be easier and I’ll have a smoother recovery. Needing to be at a lower weight for surgery is why 11 years ago I did the RFO diet at UCLA. It was more important then because I was having joint surgery, but it is just as important now.

When I got sick, I dropped weight super fast. It was almost scary how fast it was going down and for a while I thought that trend would stick. In a matter of a week or so, I was down over 20 pounds. And even when I started to add more normal food into my diet, my weight seemed to be steady. I wasn’t necessarily losing weight, but I wasn’t gaining it either which I was expecting. And for a while, that was how it was and I thought it would be.

With the idea of surgery coming up, I had a number in mind that I wanted to get to in my weight loss. At the rate I had been losing weight, it was going to be a super easy goal. At the weight I was at, if I was losing 1-2 pounds a week it was a very possible goal. So I had no reason to expect that it would be an issue to get to the number I wanted to be at by April.

Now that I’m just over a month away from surgery, I’m not close to that number at all. In fact, I’ve gained a bit of weight back from that big weight loss back in the fall. It’s not a lot of the weight (only about 6 pounds), but it’s still so frustrating. I’m so mad at myself because I know this is my fault and that I have only made things more difficult on me and the surgery. I had no reason why this had to happen, but of course my eating disorder had other things in mind.

At this point, the number I had in mind is pretty much impossible unless I take unhealthy measures to lose weight. I will not do unhealthy things because I know they will backfire on me and I’m not willing to do that to myself. I can only try to do my best to get back on track and to be at the lowest weight I can safely get down to by surgery.

I’m trying to be hopefully that I can get closer to the number I had in mind than I am right now over the next few weeks. Realistically, I think the most I could safely lose would be 15 pounds. But I think that will be a stretch and difficult. I am doing what I can to keep my eating under control, but sometimes it feels like my food is the only thing that I can control in my life. And when I can control it how I want it to be, it’s not always the best choices. I’m trying to keep my health in my mind first over my eating disorder’s desires, but I don’t always win.

I’m lucky that my surgeon did not put pressure on me to lose weight before surgery. I know that I need to do it, but I don’t feel like he is expecting me to do so. Any weight loss I have will be a good thing and there is no feeling that I might be disappointing him with whatever the number will be on the scale when I weigh in before the surgery. I think if I had that pressure on me, I would be resorting more to unhealthy things and would probably still not lose as much as I should before surgery.

I really do want to buckle down and refocus for these next 5 weeks. I know that I can accomplish some really great things with my weight loss even if I do have the occasional setback. I don’t want to keep thinking of new goals to get to by surgery because I know that will be setting myself up to fail. Instead, I just want to make sure that whatever effort I am able to do that I feel good about it and know that I worked really hard to get to where I am.

I’m hopeful that I will probably have a decent weight loss after surgery because I’ll be on a restricted diet for a while. I don’t want to depend on that for weight loss because I know that it can be temporary. But it will be a nice time that I know the scale should be going in the right direction that will allow me to refocus my plan and to hopefully continue the momentum after I start to eat normal food again.

It’s so frustrating when I was doing so great for a while and then something happens that makes me feel like I’ve ruined all of my progress. I know that recognizing that I’m struggling is a sign that things are getting better because I am not allowing myself to ignore the fact that everything isn’t ok. I just wish that things were easier for me because I really do want to not have to worry about food like I am now. I want food thoughts to not dominate my mind. And I want my efforts to show physically instead of being hidden by the occasional destruction of my eating disorder.

2 Comments

Posted in Food, Health, Tough Stuff, Weight Loss

Tagged binge eating, eating disorder, liver, struggle, surgery, weight loss

Tag Archives: liver

A Boring Tumor Check In (or Still A Miracle)

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Getting Ready To See My Liver Surgeon Again (or My Annual MRI)

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Medical Miracle Anniversary (or A Year Of My Liver Being A Badass)

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Tumor Update Time! (or Guess I Won’t Have Another Of These For A While)

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Time For Another MRI (or Still Trying To Stay Calm)

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Back To Focusing On Health (or Back To Back Doctor Appointments)

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A Tumor Miracle (or I Wasn’t Expecting This)

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MRI Time (or I Think Being Calm Is Helping)

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Surgery Shopping (or How To Prep For The Unexpected)

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Not What I Want To Weigh (or About A Month To Go)

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