Tag Archives: tumor

A Non-Surgery Anniversary (or Another Year Of Being A Medical Miracle)

Posted on April 19, 2019 | Comments Off

Tomorrow will be the 2 year anniversary of when I didn’t have surgery. I know that sentence sounds really weird, but that’s exactly what it is. 2 years ago tomorrow, I was supposed to be having some of my liver tumors removed along with a portion of my liver. But because by some miracle my tumors decided to shrink on their own, that surgery didn’t happen. And I feel like that is something to celebrate!

I’ve had some things to work through mentally with all this. When my surgery was canceled, I didn’t know how to feel because this was something I had been preparing for and all of a sudden it wasn’t happening. Some people thought I was acting disappointed that I didn’t have surgery, but that’s not it. It was just an overwhelming feeling of confusion and a disconnection with things. I’ve gotten over that feeling as I have been able to identify it, but it’s still a bit of a weird spot for me.

I do also still have a little fear when I have another MRI because I don’t want to discover my tumors have decided to grow again. My next scan isn’t for another 6 months, but I’m already a little nervous because of the gallbladder attack I had recently. My surgeon and I have discussed that it’s possible my attacks stopped when my liver stopped being distorted by the tumors. That’s not something we know for sure, but it’s something we have thought is possible. So to know I just had another attack does make me a bit fearful that maybe that means my tumors are growing and making my liver misshapen again. There’s no point in me worrying about it right now, but I know that I won’t get the idea out of my head until after my next scan.

Even though I do have some weird feelings about the non-surgery anniversary, I have way more feelings that are positive about it. I wasn’t necessarily looking forward to the surgery even though I knew I needed it because I didn’t want to have to deal with the recovery. It would have been a very tough and potentially long recovery and I didn’t need that in my life. While your liver does regenerate so I would eventually have had a full sized liver again, during the time that it’s regrowing there are a lot of other issues that can come up. Leading up to when I was supposed to have surgery I was trying to stay optimistic about what side effects I might have, but I was also realistic. I’m so grateful I didn’t have to find out what would happen.

From the time I discovered I have liver tumors to the time my surgery was canceled was a pretty hectic time. It all happened in under 6 months and there was so much we had to do in that time to get my life prepared for such a major surgery. Once I had that out of the way, I was able to focus on things I enjoyed in my life again. I feel like this really was a turning point in my life to stop putting things off and to really work on finding what I want to do and not what I have to do. This is still something I am working on, but I know that the past 2 years have been filled with much more enjoyable stuff than the several years prior to discovering the tumors. I don’t want to say that this experience made me re-evaluate my life or make me have a new outlook on how I was spending my life, but I guess that’s kind of what it was.

I think this year celebrating not having surgery is a bit different from last year. I’m still excited about recognizing how amazing and incredible my body was to be able to shrink the tumors. But the focus this time seems to be less about not having surgery and more about the new start point of things. I don’t split my life up as before surgery and after not having surgery or anything, but I do see not having surgery as a fresh start of figuring some things out about myself. I’m not 100% where I want to be or who I want to be, but I’m significantly closer now than I was before.

I’m sure eventually one day I won’t be celebrating the non-surgery anniversary anymore, but for now I still feel like it is something to celebrate and acknowledge. It’s a big part of my recent history and has been something that changed the plan of my life. I feel like that’s important to remember.

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Posted in Fun Stuff, Health

Tagged anniversary, health issues, liver, surgery, tumor

Another Story About A Tumor (or I Guess I Was Misdiagnosed For Over 15 Years)

Posted on February 21, 2019 | Comments Off

I wasn’t originally planning on writing about getting my stitches out from the surgery with my dermatologist. I have gotten stitches out before and while they can hurt it’s not a big deal. And I had been able to see for the past few days that the scar was healing really nicely and that it wouldn’t be a big deal. I was so happy that everything was going smoothly and was just ready for the stitches to be out so I could move on.

I knew when my doctor did the procedure, they sent it off to pathology to figure out what was removed. I had been told for over 15 years that this was a wart, but I questioned it since it wasn’t responding to treatment. I knew it was very unlikely to be anything bad like skin cancer since it hasn’t changed much over the years and no other doctors seemed worried about it. But my new dermatologist was sure it wasn’t a wart and he wanted to know what it was. Even though he kept saying it couldn’t be a wart, I was feeling certain that it was but it was some sort of rare one that didn’t respond to treatments. So while I was curious to get the pathology report, I wasn’t expecting much.

I got my stitches out on Tuesday and my doctor was very pleased with how everything was looking. My scar is healing really nicely and it should be almost invisible in a year or so. Even now with it being a fresh scar, it looks so tiny and it’s significantly less noticeable compared to what it was before. I had been told to use Vaseline on my stitches at least twice a day, and I went overboard with that and used it maybe 10 times a day. My doctor said doing that really helped the healing and to make it look as good as it does so far. And he told me to keep doing that for about 3 months to keep the scar from healing weird and being obvious.

After the stitches came out, then it was finally time to hear what pathology said. I thought I’d know before my appointment, but they only finished the results right before I went in. And my doctor was right, I didn’t have a wart.

It turns out, the bump on my face was a trichilemmoma. It sounds scary, but it’s basically a benign tumor of the hair follicle. It’s not common, but it’s not rare either. And while it can be a symptom of some other issues, for me it was just random. And the only way to get rid of them is to have the surgery that I had, so I’m glad that’s what we did instead of just a basic biopsy. Now that it’s gone, my doctor said it’s about a 95% chance it will never occur again there or in another spot. It really was just random and it’s done now.

When I found out that it was a benign tumor, I had to laugh. Until recently, I didn’t have much personal experience with tumors. Since I learned about my liver tumors, my idea of what a tumor is has changed. Even though I knew not all tumors were cancerous, having experience with non-cancerous tumors has made the word much less scary for me. So I wasn’t worried at all when I was told it was a tumor. It just was funny that of course I had yet another random medical issue.

And while I have had multiple dermatologists tell me over the years that it was a wart, I don’t blame any of them for misdiagnosing me. I’ve had other things in my life that were misdiagnosed and it’s never been the doctor’s fault. They can only use the evidence in front of them to figure out what might be the diagnosis. A majority of the time, they are right. Sometimes they are not. And I’ve never thought that they were bad doctors when they were wrong.

What does frustrate me is that I wasn’t a better health advocate for myself. I know what other doctors have done and what things haven’t been working. I could have said more about how often I’ve tried to correct this and the treatments didn’t work. I had one doctor previously offer to do a biopsy, but I didn’t push for it and I wish that I had. We would have figured out right after that was done that it was this benign tumor and I would have saved a few years of things not working. I can’t go back and change what happened, but I can use this as a reminder in the future that I should be less afraid to tell a doctor that I don’t think that enough is being done. That doesn’t guarantee anything would change, but I can make sure they hear me and my concerns.

For now, I’m just glad that this is done. I’m very optimistic about how the scar will look as it fades and I’m so happy that when it’s a bit less red than it is right now that I won’t always be worried if I remembered to put concealer on my face to cover it up (which is something I stressed about when I had the bump). I’m excited to have this as a thing in my past and be just another funny medical story I can share from time to time.

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Posted in Fun Stuff, Health

Tagged doctor, health issues, surgery, tumor

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

Reflecting Back On 2017 (Kind Of Reaching My Goals)

Posted on December 29, 2017 | Comments Off

I can’t believe this is my last blog post of 2017! It seems like it wasn’t that long ago that I was writing my goals for the year. This year definitely wasn’t what I expected it to be, but that was mostly for the best. But because of things not being the way I thought they would, some of my goals didn’t end up happening the way I thought. For some goals I totally surpassed what I expected and for others they didn’t happen. But even with the non-successes (I don’t consider them failures), I learned a lot.

My first goal I had for 2017 was 181 workouts. When I set that goal, I expected to be out for a little while when I had surgery so I thought it might be a bit of a stretch. I tried to make up for the time I thought I would be missing by doing more weeks of 4 workouts a week. That ended up being my new normal which was pretty exciting. And then I didn’t have surgery so I didn’t have to take the time away that I thought I would. But that didn’t slow me down and as long as the last few days this month go as planned I will be ending the year with 196 workouts!

I was pretty shocked when I looked at my total and saw how far over my goal I had gone. I knew I was going to be doing more than I thought, but I didn’t think I’d be 15 workouts ahead of my goal. That’s pretty amazing and even if every workout wasn’t the best one, consistency is so important and I think I’ve proved to myself that I have that.

My next goal I had for the year was to get through my liver surgery as easily as possible. I’ve got a history of having an easy time with surgeries, but this was going to be the first time I would have to stay overnight at the hospital and it was a much more extreme surgery than any I’ve had before. Well, as you all probably know from all of my posts about it, I didn’t have surgery. So technically there was no way for me to accomplish this goal. But I reframed it in my mind to be more about getting through this entire situation about my liver with less stress. And I think I did accomplish that. I think that I will always be a little nervous before going in for an MRI because I don’t want the tumors to grow, but beyond that time I really don’t think about my tumors that much at all. I do think about them once a day when I do visualization, but after that I try to not focus on it.

Next was to work on my recovery and hopefully reduce my binge episodes. I’m torn on how I did on this goal. I think that I have made some big strides in my recovery and there was some time where my binges were the most infrequent they have ever been, but that didn’t last. I don’t know what I need to do to keep that momentum, but my awareness is higher than ever and I consider that a win. I think this past year I’ve also become more aware of how long this recovery journey may take and that even if it doesn’t feel like I’m taking steps forward I am. I wish that some of my progress was more obvious and the results could be seen, but I think I’ll just have to wait a bit on that. But it’s a good thing that there isn’t a deadline to be recovered.

Next was a money related goal. I wanted to reduce my debt to be at a number that I had in my head. That reduction would have been about 25% of the debt I have and would have been amazing. I didn’t quite make it to that number, but I did get my debt down about 19% which is better than I have done before. This is also after getting a major reduction in my hours at one of my jobs. I went from 12-15 hours a week to 4 which cut my income down a lot. So to be able to reduce my debt that much and re-budget my life with the reduced money coming in is a big step. I wish I could have done more, but I also know that the circumstances weren’t easy and to reduce the debt at all took a lot of work.

I also set a goal to have a new PR in my 5K race. That worked out pretty well for me since I had a new PR at the one 5K I did this year. I had that PR on the course with the hills which usually slows me down. But because I had my running intervals longer that made up for any decrease in speed I had on my hills. To PR is awesome and I’m so happy that I was able to do that. But I was sad that I only had 1 race this year and that I didn’t have another chance to try to improve on that PR. Next year will be weird because neither of the 5Ks I usually do will be happening, but at least I know that I hit my 2017 goal for my races!

And my final goal for this year was to have more fun. I think I totally succeeded in this! I had so many Disney and Universal adventures with friends. I went to a lot of fun parties and just tried to have a lot of fun with the random things of life. And even though dating can be crazy and stressful at times, I’ve been having fun with that too. It does help that I’ve been turning all the bad stories into stories for my book so whenever I have a bad date I think about how funny it will be when someone else reads it. I haven’t gotten serious about anyone yet, but to have fun with dating is something that hasn’t really been in my past before and I’m glad that’s kind of my experience now.

Overall, I think I had more wins than non-successes with my goals. I might not have achieved everything I wanted, but that’s not really what goals are about. If they were all easy to reach then I didn’t set them high enough. I need to be striving for things and not reaching my goals does motivate me to do better. Look at my workouts as an example. I missed my goal in 2016 but far surpassed it in 2017. Missing that goal last year motivated me to do even better this year.

My next few posts will all be about what I’ve got in mind for 2018. I’ve got some big goals again that I’m thinking about and I’m excited to share them next week. But for now, I guess that’s a wrap on posts for 2017! It was a great year for me and I’m so grateful for you all following me on my journey! Have an awesome NYE (and please don’t drink and drive!) and hopefully we all have an incredible start to 2018!

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Posted in Celebrations, Dating, Fitness, Food, Fun Stuff, Health, Saving

Tagged 2017, 2018, binge eating, dating, debt, eating disorder, fitness, fun, goals, online dating, Orangetheory, recovery, 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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Posted in Health

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

Explaining Myself (or It’s Not Disappointment)

Posted on May 23, 2017 | Comments Off

It’s been over a month since I was supposed to have surgery. By now, pretty much everyone in my life knows that my surgery was cancelled and the situation around that. I tried to email and text most of my friends as soon as I knew and many other people found out though here or social media. But every so often, I’ll run into someone who had no clue that I didn’t have surgery. Sometimes they are surprised to see that I’m looking so good or out and about and sometimes they are just assuming everything went fine and I forgot to tell them about it.

Each time I run into someone who didn’t know (or I meet someone new who is finding out about the situation), I feel like I have to explain the entire thing. I have tumors, they aren’t supposed to shrink, somehow they did shrink, we don’t know how it happened because I didn’t change anything in my life, I don’t know what’s next for me. And so often people tell me that I sound disappointed that I didn’t have surgery and I should be grateful that somehow I beat the odds.

It’s not easy to explain that I am grateful. I didn’t want surgery. I was stressing about surgery from the day I found out I would be having it. But at the same time, I spent 6 months knowing that I have tumors inside of my body and was excited to get them out of me. Now I only have 2 tumors so at least there aren’t 3, but I still have to be ok with the idea that there are 2 tumors just hanging out in my liver.

But even though I’m grateful, I’m still a bit skittish about this all. I am supposed to have my next MRI in about 4 months to see what’s going on (as long as there’s nothing that causes me to need a MRI sooner). Once that happens, I’ll meet with the surgery to make a new game plan. We have already discussed a bit of a plan where if the tumors are bigger I’m having surgery and if they are smaller we are going to keep waiting. But if they stay the same size as they are now, it’s a bit of a gray area.

My tumors are small enough and in a position in my liver that they aren’t as risky for me to keep as they were before. But there are still potential risks for me later in life if they stay in there. So there is this great unknown of what the next step will be or if I will be having surgery in the future. One thing I love about my OB/GYN and my liver surgeon is that neither of them are afraid to tell me that they don’t know the answer to something. But it’s a bit frustrating when neither of them know what the long-term plan for me will be.

And if I do sound disappointed about any of this, it’s because I had a plan in place. I was going to have surgery, the tumors were going to come out, and that was going to be that. Now I’m in another situation where I don’t know what my future will be and I don’t like that. I don’t know if in the fall we will have to plan for surgery and then I’ll need to do a lot of the same prep work that I had just done. Or maybe I’ll continue to be a miracle, the tumors will be smaller, and they will be small enough that there are pretty much no risks for me anymore.

The other weird feeling I’ve been dealing with is wondering at times if I totally imagined this all. Maybe I needed the surgery to make it feel real? I’ve had this feeling with some pretty intense news in the past. When I found out my mom had cancer or my grandpa died, I was almost wondering if I dreamt it and it wasn’t real. I was almost scared to talk to a friend to get support because I wondered if somehow I’d find out that it wasn’t true and would feel silly. And that’s a bit of what I’ve been feeling about my tumors. I made a huge deal about them and then it became almost nothing. I feel like I shouldn’t have made such a fuss about them (even though there was no way for me to know they would shrink). But nobody has been making me feel bad about things, only myself.

I know that most of you reading this understand my feelings. I’ve had several friends who have dealt with medical issues totally get what I’m talking about. It’s a weird feeling to want to be grateful but be worried at the same time. And hopefully as time goes by this feeling will be less intense and less often. It’s gotten so much better over the past month and hopefully the next month will make it less of an issue. And eventually, this will maybe just be a weird story that I can share from time to time without having any feelings attached to it.

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Posted in Health, Tough Stuff

Tagged health issues, surgery, tumor

Tag Archives: tumor

A Non-Surgery Anniversary (or Another Year Of Being A Medical Miracle)

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Another Story About A Tumor (or I Guess I Was Misdiagnosed For Over 15 Years)

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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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Reflecting Back On 2017 (Kind Of Reaching My Goals)

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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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Explaining Myself (or It’s Not Disappointment)

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