Prior to discovering my liver tumors, gallbladder attacks weren’t that unusual for me. In fact, the hospital visit where I randomly discovered the tumors was because I thought I was having the worst gallbladder attack of my life. Once I learned about the tumors and they started to shrink, my gallbladder attacks stopped. I discussed this with my liver surgeon and we think that since my tumors were so big they might have been pressing on my gallbladder and making my attacks worse. I still have gallstones and gallbladder issues, but it’s not anything like it used to be.
My liver surgeon was going to remove my gallbladder when I was supposed to have my tumor surgery. Since that didn’t happen, he said that he would still do both surgeries if I need one or the other. So if I need my gallbladder out, he can take out whatever tumors are still seen. I do feel better that I have a good surgeon because there is a very high chance my gallbladder will come out eventually. But I am in no rush to do it and since I haven’t been having attacks I don’t think about it too much.
But last week, I had my first attack in a long time. I don’t know what food triggered it because I didn’t eat anything weird. And it wasn’t like most of the attacks that I have had in the past. I usually can tell that an attack will be coming a few hours before it hits. I hate knowing that it’s coming, but I guess it’s also nice to have a warning. My attacks usually last a few hours and there are a few tricks I’ve done over the years to help the pain feel a bit less severe and I have some breathing techniques that I’ve used too.
This attack came on very quickly. I had no warning symptoms leading up to it. It just hit me and I was in the middle of an attack before I knew it. I was having the stomach pain, the rib pain, crushing sensation in my body, and overall body sweats within a minute or two of the attack starting. It was the weirdest thing because I am not used to it happening so fast. And I haven’t had an attack in so long that it did take a bit of time for me to realize what was happening. I was scared I was having a heart attack or panic attack and couldn’t calm down. After about 10 minutes, I realized it had to be a gallbladder attack and went to lay down on my bed to try to let it pass.
Since it’s been a while since I have had an attack, I guess I forgot how horrible they are. I was in so much pain and I couldn’t believe that it was so awful. The entire attack was over in under an hour which is much faster than normal for me. So maybe the attack was a condensed attack which made everything worse. Or maybe I just forgot about them since it’s been a while. Either way, I was so grateful when it was over and I was so upset that it happened.
I have no clue if this is the start of all my issues happening again or if this was a random attack. I’m really hoping it was random because I do not want to have to worry about this again. But if they happen as often as they used to, I probably will consider surgery more seriously because there is no reason for me to be in this much pain on a regular basis if it’s easy enough to prevent. I have an MRI in October to check my tumors and they usually check my gallstones too. I’m hoping that I can at least wait until then so I can have an idea if my gallstones are worse than they used to be.
I had been so optimistic about my gallbladder for so long now because the attacks stopped. Maybe I needed the reminder that I still need to be careful and aware of my gallbladder issues and that’s what this was. I really hope that’s what it was and I heard that reminder loud and clear. I do not want to go through another attack again. I know that that’s not necessarily possible, but I at least want a very long break again before I have another one.
Posted onFebruary 21, 2019|Comments Off on Another Story About A Tumor (or I Guess I Was Misdiagnosed For Over 15 Years)
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.
Posted onFebruary 18, 2019|Comments Off on A Low Key Workout Week (or Working Through The Stitches)
I knew this past week of workouts was going to be a weird one. I knew that 3 of the workouts would be while I had the stitches and I had no idea how it would affect me. But I was prepared for it to be bad and I think that preparation did help. It wasn’t an easy week to work out and it was hard in ways that I wasn’t expecting it to be, but the preparation to make it an easier week helped me not feel too bad about what I could and couldn’t do.
Monday’s workout was a strength based class, and I will be honest that I wasn’t in it 100%. I was still dealing with the end of my nausea, but that was only a little part of my distraction. Even though I have said I was excited to have the surgery with my dermatologist, I was nervous the day of. I knew it would be fine, but I just wasn’t looking forward to needles and potential pain and I know that it made me not focus completely on my workout.
The workout was a switch format so I was at each section of the room for 6 minutes before switching (we did 2 full rounds around the room). For cardio, we started with a 90 second push pace and then we had rounds of 30 second push or all out paces but with added incline/resistance levels. I was able to use my new push and all out resistance levels and even went above that for the hill work. It wasn’t my highest resistance levels I’ve used, but it was up there. Even though my focus wasn’t totally in the workout, I usually do zone out a bit on the bike since I don’t have to focus on it as much as the treadmill. So I wasn’t affected too much for cardio, even though I still know I could have done better.
For the rower, the first block we started with a 250 meter row and then we had lunges with tricep extensions using a medicine ball. Each time we returned to the rower we went down 50 meters but the lunges stayed the same. And for the second block on the rower, we had the same format but the exercise between the rows was a squat twist with the medicine ball. I feel like I struggled the most with my lack of focus on the rower. I wasn’t able to get my wattage up to where it usually is when I’m having an off day and things were just taking me so long to do.
On the floor, the first block was lower body focused with mini-band work. We had forward walks, lateral walks, and toe reaches all with the mini-band on our legs. My hips were starting to get a bit sore with the lateral walks, but I also know that my feet weren’t totally straight (my natural stance is with my feet pointed out) and I think that might have made my hip hurt more than it should have. And the second block was all upper body focuses with shoulder presses, bicep curls, shoulder raises, and upper cuts. I went with medium heavy weights for the weighted work, but they felt like they were heavier than I’ve ever used before. I don’t know what was causing it to be so hard, but I really think the focus issue was the main culprit.
The rest of my workouts this past week were affected by having the skin surgery Monday afternoon. I figured I would be sore after and that would make me need to go a bit easier with the workouts. But there were a few other factors that ended up affecting me too. First, because of where the incisions and stitches are, I can’t really move my face too much. I figured this wouldn’t be an issue in a workout but then I realized when I lift heavy weights I have tension in my face. So I had to go light with the weights. Also, because of the pain in my jaw, I wasn’t eating regular food for the first few days. I was doing all liquids and I know my calorie count was way too low. I didn’t have the same energy I normally do and I had to take breaks when I was feeling lightheaded. I really tried my best, but I also know that everything I did the rest of the week was affected by this.
Wednesday’s workout was endurance, strength, and power and it was the first workout after getting the stitches. I was so paranoid that I was going to do damage to my face somehow and I really was cautious. For the cardio, I did my old resistance levels on the bike but didn’t do any additional resistance levels when we had hill work. I just kept using my old push pace level and not worrying about anything else.
On the rower, the first block we had started with a 150 meter row and squats with front presses with a medicine ball. We repeated that until the block was done and I didn’t do too horribly with it. The second block was 30 second all out rows with the same squats with recovery between. Again, I wasn’t doing too horribly with the rowing and that was probably the part of the workout I was able to work the hardest during.
On the floor, we had one long block. We had lunges with weights, lunges without weights, tricep extensions, plank jacks, and squats. It was during the triceps that I discovered that I had to go easy on the weights to not hurt my face (that is the weirdest thing, but it’s exactly what the situation was). I still feel like I was using decent weights, but I wasn’t working as hard as I am used to.
Friday’s workout was a strength class, and while I was in less pain and more used to having to be easy with the weights this was the workout where the lack of food hit me the hardest. I never thought I would pass out or anything, but it was very strange realizing that my stomach was so empty during class.
The cardio had 2 blocks with hill work. The first block had a 30 second hill, 60 second hill, and 90 second hill and the second block had a 90 second hill and 2 minute hill. I went very easy on the resistance levels for the hills and ended up staying between my base and all out resistance levels. It felt hard because of me being tired, but I probably could have done a bit more if I really tried.
The rower started with a 1000 meter row. This terrified me, but somehow I managed to do it without needing a break in the middle. After that we were supposed to do 100 jumping jacks. I made it through 50 and knew I couldn’t do more. Then we had a 500 meter row and more jumping jacks and some squats. I just did the squats and when I finished those the time was called so I didn’t make it through any other rounds.
The floor was 2 block and it was upper body based. The first block was a chest press, single arm low row with weights, and heel touches. And the second block was hollow hold single arm chest press, double crunches, and plank work. I was prepared to use easier weights this time which helped and I got through 2 rounds of all the exercises each block.
Saturday’s workout was the closest to normal I felt the entire week. I was still dealing with being a bit tired due to not eating enough and I knew I would have to be easy with the weights so I didn’t put stress in my face, but it was still so much closer to normal. It was an endurance workout, but because of how some things were done it felt closer to a power day for me.
For cardio, we had multiple rounds of 2.5 minute distance challenges. The first time, we were supposed to be in a push pace the entire time. Then as we did each round, we had a base pace to start the distance challenge. That would require us to go harder during the push to be able to match the distance each time. I was using my normal base resistance and my old push resistance on the bike to take it easy and I didn’t do any all out resistance levels. I was pedaling hard and was able to match my distance each time, but I wasn’t working as hard as normal.
On the rower, we stared with a 2.5 minute row for distance. After that, we had lunges with tricep work using the medicine ball. Then we went back to the rower and were supposed to go 100 meters less than what we did in 2.5 minutes and keep repeating the pattern. Even though I went further than 500 meters in the 2.5 minute challenge, I decided to use that as the distance to measure from so the math was a bit easier for me. I did much better on the rower than I had done before and didn’t need the breaks I thought I would need. I still wasn’t rowing as hard as I could because I could feel the stitches pulling a bit from me tensing my face, but I just tried to find what was the line between going hard and going too hard.
And on the floor, we had 3 blocks. The first block was a core blast with mountain climbers, toe reaches, leg lifts, and sit-ups. This block went well because I got to rest a bit from the rowing and it wasn’t hard for me with any of the issues I had been dealing with. The next block was a mini-band block with squats to leg lifts and forward walks using the bands. And the last block was a weight block with skier swings and lunges. I had to go easy on the weights to not have any strain on my face, but I was not that much lower than I normally use.
Considering how worried I was about how this past week would go, I was pretty proud of myself. I did encounter issues I wasn’t expecting, but I quickly figured out what I needed to do and I worked around what I couldn’t work through. The next few weeks are going to be a bit weird for me. This week I will have the stitches in for one workout and I don’t know yet if I will have any issues or restrictions to deal with when the stitches are out but the incision is still healing. And then the 2 weeks after this I will not be doing my normal workout schedule due to some things I have planned. I do think I found a way to still get in my 4 workouts each week, but there is a chance it might only be 3. I just have to play it by ear and see how things go.
On Monday this week, I had the little surgery with my dermatologist to remove the wart on my face (or whatever it is). This has been something I have been dealing with for so long, and it’s crazy to think that I just had a surgery to take care of it. I’m still in a bit of pain from it all, but I am glad I did it.
I haven’t gotten the results from the biopsy yet, but I’m going to assume that it was a wart. That’s what every doctor has told me it was. When I first got it when I was 18, the dermatologist I saw did 1 freezing treatment and it went away within a few days. It was so easy and simple and I thought it was done forever. But when it grew back, it seemed to come back with a vengeance.
I’ve done so many freezing treatments with so many doctors and that was always their first choice with treatment. When one doctor finally said it might need to be surgically removed, I went to a plastic surgeon to discuss it and was pretty much told it was a bad idea. I just kept going to new doctors and having them try to freeze it. And it never worked.
If it was just a boring wart, I don’t think I would have cared as much. But this was painful and causing issues and I wanted it gone. So when the newest dermatologist I met (for an unrelated issue) said that it would be a quick and easy surgery, I decided to go for it.
I knew that this would involve some shots since they had to numb my skin. And I knew it would probably hurt after the numbing medication wore off. But those negatives would be worth having this done with and not a problem in my life anymore. I did ok with the numbing shots, but they weren’t fun. My doctor understood that I hate needles and he really tried to be nice about it all. He kept apologizing when they had to do more just to make sure I’d be good and numb before he started.
The actual biopsy procedure was so quick. He used a tool that punched out a circle of my skin and that was it! I didn’t feel the punch at all but I was warned I might feel some pressure. But I was so numb and it was so quick that it was over before I knew it! The longest part was getting the stitches, and there were a few complications.
My doctor knew that there would be blood because he was cutting a hole in my skin. And I know that certain medications can make you bleed more so I didn’t take any of my medications that I could skip for the past week. The only thing I took was my Vyvanse and my anti-nausea medications. However, after my doctor asked if I took any blood thinners, I remembered that I also had taken some Motrin to ease my cramps last week. It wasn’t that recently, but it was still in my system and it was making me bleed more than expected.
Fortunately, it ended quickly and my doctor was able to start working on the stitches. This was the part I hated the most. I could feel him stitching my skin and pulling on it even if it was painless. But it was the weirdest sensation and I really didn’t like it. It wasn’t painful, but it just bothered me. I also could hear random things since this was happening close enough to my ears and that was freaking me out a bit too. But I tried my best to stay still because that would help my doctor do his best work. With this scar being on my face, I wanted to do whatever I could to minimize it.
The entire thing took a little under an hour. It did take time to get everything ready and for the numbing shots to kick in. Plus it took longer than expected because of the bleeding issue. I only got 2 stitches in my face, but my doctor wanted to make sure they were perfect so the scar would be the best it could be. I will always have a scar there now, but it should be better than what it looked like before.
I got to look at the stitches before they covered them up, and I was a bit surprised how tiny they were. I don’t know what I was really expecting, but I thought it would be much more than what it looks like. Right now, it almost looks like a hashtag or pound sign on my chin. I feel like it looks worse now, but when the stitches come out and the scar is healing it will be better.
And in the long run, a scar is going to be much easier to cover with makeup and won’t cause me pain or the other issues I’ve been dealing with. I’m so glad that this is done and while I hate the pain I’m in now I know in the long run I will be glad I did this.
Now, I just have to rock the stitches look for the next week before they come out. Not sure if I’m going to put a bandage on it while I’m out in public (I know I will when I go to my workouts), so it will be interesting to see the reactions of others.
I am not a fan of changing doctors. I like having a medical team that knows me and understands whatever issues I’m going through. I’m a medical weirdo so it can take a while to update a new doctor on my current situation and I’d rather avoid doing that. I’ve been lucky that many of the doctors I see on a regular or semi-regular basis are doctors that I have had for years, but occasionally I have to switch doctors for one reason or another.
I mentioned that my body is starting to show signs of stress. Some of the stress was showing up as odd bumps on the back of my neck that I didn’t know what they were. I tried not to freak out about them, but they weren’t getting smaller and they were sore so I knew I needed to make an appointment to see my dermatologist. Unfortunately, this time of year seems to be very popular with all dermatologists and the doctor I have been working with for a while wasn’t available for at least a month. I didn’t want to wait that long, so I asked if I could see a new doctor and I was able to get an appointment for earlier this week.
By the time I had my appointment, the bumps on my neck were almost gone. But I still wanted to get them checked out along with a few other skin issues I wanted to ask about. I don’t like to stack up medical issues, but this time that’s just what happened naturally.
Fortunately, the bumps I had on the back of my neck were nothing bad. It was more to do with my hair follicles than my skin and I got a recommendation for a new soap I could use that would help prevent them and make them go away if they return. I also asked if my recent hair loss in the spot that I had the bumps was related, but they weren’t. I just happened to have a bald spot in the same spot and that may have been the reason I noticed the bumps. If they had been covered by my hair, while I might have still had a bit of pain I wouldn’t have noticed them or realized they were bumps instead of a bruise.
And since I was seeing a new dermatologist, I also wanted to ask about the wart that I’ve had for over a decade. My last dermatologist considered doing a biopsy because she questioned if it could be a wart (typically even without treatment they will go away within 6 months), but it got postponed and I honestly forgot to do a follow-up to schedule it. I haven’t done anything to treat it recently and it’s been bothering me just as much as it always has.
This new dermatologist had the same hesitation as the last one about whether or not I have a wart on my face, but he didn’t hesitate on what we should do. He suggested that I come back for an in-office surgical removal. This is what I had discussed with a plastic surgeon a long time ago and that doctor made it seem like it would be a very difficult process with a very horrible scar. I didn’t want to disfigure my face, so I didn’t pursue the surgery with the plastic surgeon further.
And my last dermatologist never felt like it was the right option to take. I don’t know why I didn’t push the issue further and see what she felt would help this go away since all the treatments she had been trying had failed, but I know what hasn’t worked for over a decade. And while there are a few other options that I know I could ask to try, I also know the success rate of those other options are usually under 50% and most of them are painful.
This surgery is super minor and will be done with just a numbing shot. I will have stitches in my chin for about a week before they are removed and I will have a scar. The scar might be very obvious at first, but the dermatologist feels like it should be faded within 6 months and it will be easy to cover with makeup. And even with having a scar there, it will be less noticeable than what I have now. But to me, it’s not about how I will look. This wart has been painful for years and I want that pain gone.
I know it sounds like a rash decision and that I’m just hurrying things along. But this is something I have considered for a very long time and every doctor I have brought it up to has hesitated and told me that they didn’t feel this was a good option. This doctor was very confident in being able to make it work and to make the scar as small as possible. And for me it is so important to work with doctors who feel confident. I don’t always need my doctors to have all the answers, but they need to be confident in what they say even if they are saying they don’t know the answer at the moment. And I like the confidence of this doctor and I am ready to take the leap and finally get rid of something that has bothered me for years!
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.
As I mentioned in my post about getting my most recent MRI, I already knew that my livertumors 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!
Posted onJuly 11, 2017|Comments Off on Surgery Anniversary (or I Guess It’s Good I Almost Forgot)
Last week was the 11th anniversary of my hip surgery. In some ways, it feels like this was a lifetime ago. In other ways, it feels like it was only maybe a year or two ago. I still think all the time about my surgery and what else I might need to have coming up, but it’s not as huge of a focus of my life as it’s been before. That could be because I have other medical issues that are a bit more important right now. But whatever the reason, I was thinking so little about my hip surgery that I almost completely forgot the anniversary of the surgery.
I actually ended up remembering on the day of. Usually, I think about it leading up to the day and then acknowledge it the day of. This time, I was working and all of a sudden looked at the calendar with a shock thinking I had totally forgotten about my surgery anniversary. It was almost a sense of relief that I didn’t totally forget and could still say something about it being 11 years later. But it’s crazy to think that I easily could have had the entire day go by without remembering it.
I’m no longer thinking of milestones the same way with my hips. Before, it was just trying to do better than my surgeon’s predictions. There are still potentially 3 more surgeries I could need, and he felt like I would not be able to make it this long without having another surgery. I’ve completely surpassed that prediction so I’m not thinking too much about it. Now, it’s the goal that he got in my head that it would be ideal if I could avoid getting a hip replacement until I’m 40.
The problem with hip replacements are that they don’t last forever. You do need to replace the replacement, and sometimes that can be every 10 years. Each time you replace them, that’s another pretty major surgery. So to wait until I’m 40 would limit how many times they would have to replace them. Ideally, I’d like to avoid hip replacements completely but I’m aware that it’s not necessarily the most realistic goal. So I just want to stay on the plan to not need a replacement for at least another 6 years.
I’m still doing most of the things my surgeon told me to do to keep my hips as healthy as possible for as long as possible. I’m not doing things that are risky for me falling and potentially breaking my hip like skiing or skating. But I am running now and I know that it’s not the best thing for me to do. But I’ve come to a place where I’ve realized that maybe I need to be a bit riskier with my hip health to keep me happy and healthy. I can go without skiing forever if I have to, although I have been wishing I could do it again. But now that I’ve started to run, I’ve realized that I can’t drop it like I dropped other stuff. I haven’t been feeling any extra pain with running and until I know that it’s causing harm I don’t feel like I need to stop.
I’ve also realized that if I want to live in a protected little bubble to prevent future surgeries, I could do that. But I’ve lived in fear of needing my next hip surgery soon for too long and I don’t want to have it hold me back anymore. I think that I’ve grown so much as a person over the past year or two and I don’t want to stop making that progress. So if I have to take a few extra chances in my life with my hip, so be it. Also, worst case scenario is that I need to get a hip replacement before I’m 40. That’s not the end of the world and I’m still doing much better than my surgeon expected me to do.
Even though I almost forgot my surgery anniversary this year, I think that I’m going to think of it every year and remember how far I’ve come in that time. 11 years is a long time (1/3 of my lifetime!) and I know that there was no way for me to know that I would be in the place that I am now back then. I was in so much pain before surgery and I’m so grateful that I haven’t had to experience that again since waking up after the surgery was done. I was looking back at the photos my parents took of me right after I got out of the hospital (which was only about an hour or so after surgery) and the smile on my face is just so huge. I know the smile then represented getting through surgery and not being in pain anymore. But now, it represents a new beginning to my life and being able to do things that I never dreamed I’d be able to do.
Posted onMay 23, 2017|Comments Off on Explaining Myself (or It’s Not Disappointment)
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.
My last fewposts have been about getting back to my usual self. While I haven’t been writing about that too much, I think this is something that I’ve been struggling with for a while. It’s easiest to say that I’ve been struggling since I found out about the tumors because it seems like I’m splitting my life into before tumors and after tumors.
As soon as I knew about the tumors, my life got crazy. There was the scheduling of tests and planning for surgery, but that wasn’t what really got to me as much. It was the disconnect I felt with my body and life because I couldn’t understand how I could have massive tumors and not know about them. I felt out of control and not in charge of my own body and life. It’s such an odd feeling and I wasn’t able to express myself properly.
Control is a weird thing for me. Eating disorders are usually all about control. I question if mine is a control thing since I’ve likely had my eating disorder since I was a kid, but maybe it has a little to do with that. I control what I eat, how much I eat, and when I eat. While I do feel like I’m in a trace while I’m having a binge episode, maybe there is an element of control in that. So to feel out of control isn’t the best thing for my eating disorder.
And when I found out the surgery was cancelled, my first feeling wasn’t one of relief but one of feeling out of control even more. Now, not only did I have tumors and not know about them but they were able to shrink and there’s no way to know why and I can’t control the shrinking. Also, I didn’t know my tumors were shrinking so I was not able to control anything about that.
I really do feel like my soul and body have healed a lot in the past few days. I don’t know what triggered it, but getting back to my regular life is probably a lot of it. I’m a creature of habit and routine and being able to get back into my routine from pre-tumor time is nice. I haven’t had that since October (when we found out there was something wrong with me) and now that I’ve had a few days in my old routine it’s been very reassuring for me. There are still tumor related things in my life (no birth control pill, needing more medical tests, the possibility of surgery in the future), but this is the closest I’ve been to my old routine in a long time.
I’ve been having such a feeling of calm while doing things that I’m used to doing. Being back to a normal work schedule (and not having to work extra hours to bank them for time off) is so nice. I have free time 2 work mornings a week so I can do errands or just take my time getting ready for the day. I’m adding funthings back into my calendar and not stressing about how I’m spending my time after work (before, I was worried if I should be doing something to prepare for surgery instead of having fun). I’m able to get back to auditioning when opportunities come up and not worry about when the shoot dates are. And I can put the idea of my tumors in the back of my mind when I can.
I’m sure that the tumors are going to be something I worry about the rest of my life. Even if at my next MRI they appear to be completely gone, I will still be at risk for them to come back with any hormonal changes I will have in my life (pregnancy and menopause are the two biggest ones I’ll have to worry about). And if I am pregnant in the future, I will have to be monitored a bit more than most women. But I’m lucky that I have an awesome OB/GYN who has been doing so much research on the tumors and how to take care of patients with them. So I think I’m going to be fine as long as I have her as my doctor.
It’s weird how nice it is to feel like I have control again in my life, but I’m glad that I figured out what was making me feel off and how I could fix it. I’ve been wanting to feel normal again for so long and I guess it just took some self-discovery to figure out what it would take to make that happen.
Stopping A Panic Attack (or Only One Health Issue At A Time)
