Tag Archives: doctor

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

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

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.

Taking Back A Medical Miracle (or Getting My Eyes Checked Again)

I wrote recently about how I got my eyes checked and how I had another medical miracle. It was so crazy to be told that my eyes were getting better, especially since my prescription hasn’t changed in about a decade. But after talking to my mom, we figured that maybe when I went off hormonal birth control something might have changed with my eyes. When I was looking into it, your vision can get worse when you start birth control. When I started it, my eyes were getting worse every year so I wouldn’t have noticed it.

I was so excited and ordered new contacts and lenses for my glasses right away. I had a slight issue when the lenses for my new glasses came in, but I was able to resolve it (and get a partial refund because I was able to go with a cheaper option). I didn’t notice how my vision was in the glasses because I was wearing my contacts while I was there. I didn’t want to take out my contacts and just figured it would be fine. But because of the issue, I had to get my old lenses back in my glasses while they ordered the second set.

Then my new contact lenses arrived at my house. The day after they arrived, I tossed my old lenses (with my old prescription) and put in a pair of the new lenses. And everything seemed fine for the first few minutes. New contacts always feel nice when you put them in, so I was getting used to that feeling fora minute. But then I sat down on my couch to watch the news that morning and realized that things weren’t right. There is a clock on my cable box and I wasn’t able to read the time on it clearly. Then I started to look around my house and noticed that things were blurry that never have been blurry for me before.

I knew that something was up and I immediately put the new lenses in a spare case and put the last pair of contacts with my old prescription in and everything stopped being blurry. I was told my vision had been overcorrected, but I knew that I should be able to see things within my house without them being blurry. So I called the appointment call center to see what could be done. They agreed that I should come in to get my eyes checked again, but I wouldn’t be able to be seen for a few weeks.

So I waited patiently and this week I went in to get my eyes checked again to see what was happening. Long story short, while my vision is slightly better than what it was 5 years ago, it’s not improved enough to change my prescription. I could go to a slightly weaker prescription, but in my case it’s better to overcorrect things a bit (it becomes a problem in 6 years when I’ll be 40). The doctor I saw the second time was so nice to me and explained that so many things could have caused my eyes to be weird and to make it seem like I had improved vision. But in the end, I’m keeping everything the same.

I was able to get a straight exchange of the contacts I bought (I’m just waiting for the new ones with the old prescription to be shipped to me) and I was able to cancel and get a refund for the new lenses for my glasses that I ordered. And since this appointment was a re-check of my eyes, I didn’t have to pay for the appointment. Basically I walked out with everything being the same as it was before I walked in for my first appointment.

I know that some people would probably be a bit disappointed to not have another medical miracle. But honestly for me, I’m actually a bit relieved that my vision didn’t get better. I’ve felt so disconnected from my body with the entire tumor situation and to not realize that my vision got better would make me feel that way even more. When the eye doctor told me my vision was better, I was actually a bit disturbed that I didn’t notice anything. And I tried to let that feeling go because I thought that I was just being crazy.

So to know that I shouldn’t have noticed any differenced helped to make that feeling go away. I also like knowing my vision is still the same because it gives me the option to get laser eye surgery if I chose to do so. It was a bit annoying to have to go through 2 different doctor appointments and some complications with ordering contacts and glasses, but that’s a minor inconvenience compared to how disconnected I was feeling.

I still have the medical miracle going on with my liver and my tumors, so that’s pretty awesome. But I’m ok with only having one miracle going on at once.

My Eyes Had A Miracle Too (or I Wish I Knew What I Was Doing Right)

I had a doctor appointment to get my eyes checked this week. Originally, I had no plan of blogging about this. Eye appointments for me are pretty uneventful.

I’ve worn glasses or contacts my entire life. I think my first pair of glasses were when I was 3 or 4. I am pretty nearsighted (so I can only see things clearly that are close to my face) with a slight astigmatism. Nothing too fancy about my eyes other than my vision is pretty horrible and I have a strong correction in my contacts and glasses.

Honestly, the most exciting thing that happened regarding my vision in the recent past was when I broke my glasses. And even that story is pretty low-key. So when I knew I had my eye appointment this week I figured I’d go in, have them tell me everything this the same, and get some more contacts. I had been told that the brand of contacts I wear might have been discontinued, so that was the only thing that seemed like it might be interesting. Getting fitted for new contacts can be a pain and finding some that I like can take time. And the ones I have no are not tinted (I used to wear colored contacts) but have a slight tint to them so it doesn’t affect my eye color but allows me to find them if I drop them.

When I got to my appointment, everything started off pretty normally. They took my blood pressure (which was a bit higher than normal like it always is before a doctor appointment), the nurse took me back where I had to read the letters from the projection with my contact lenses in, and then I had to wait for the doctor. Once the doctor came in, she testing one eye and then the other before having my take out my contacts.

Next was the glaucoma test where they puff air into your eyes and then back to the exam room where the doctor tested different prescription strengths to see what made the letters on the wall look better. I always feel like it’s a trick when they ask you if version one or two look better. Sometimes they look equally as good and bad. And I don’t want to feel like I’m saying the wrong thing so I do take my time. But I know that there isn’t a right or wrong answer, just what I honestly see. And I tried to be honest, even when that means saying they both look good and bad.

When all the vision tests were done, I was expecting her to say that everything was still the same. That’s what I want because I’m hoping that in the future I can get laser eye surgery so I don’t need contacts forever. And you must have the same vision prescription for a bit of time before you can have laser eye surgery. But to my surprise, my vision is actually better now than it was the last time it was checked!

Both eyes are about 10% better now than they were before. And my old prescription is one that I’ve had for about a decade! I was used to my vision getting worse every year growing up, but it has been stable for so long. So to have my vision improve is not something I ever would have guessed.

My first question to the doctor was to find out what could have done this. I wanted to make sure that whatever I did is something that I keep doing. Maybe I can keep improving my vision! But she said that there isn’t really a reason that it could be getting better. She asked if I was using a computer less, but I’m actually using a computer more now. That was the only thing she could think of that would potentially help my vision.

I did talk to my mom after my appointment and she mentioned that maybe going off hormonal birth control improved my vision. Hormones can do funny things to you and I wouldn’t have really noticed my vision getting worse when I started the pill because I was used to my vision being worse every year at that time. I’ve done some research and that can sometimes be the case, but that seems to be a rare thing to have happen. But I’ve been getting all the rare and one-in-a-million medical scenarios lately so many this is just another one!

Because my vision is so significantly different, I had to get new contacts plus change my glasses prescription. They didn’t have any samples of the contacts for me to take home with me, so until the new ones get delivered I’ll be wearing the ones that overcorrect my eyes. It doesn’t feel too blurry, but after seeing how much clearer everything was with a weaker prescription I can’t wait until the new contacts get here.

And while I usually don’t update my glasses that often, because of how drastic this change is it was recommended that I change my glasses too. The day of the appointment, you get a discount on glasses. You get a better discount if you get new frames and lenses compared to just lenses, but even with the bigger discount it was still $20 to get the new frames. So I just decided to update my lenses. I placed an order for those and when they come in I just bring my glasses in and they will change out the lenses for me that day. I’m glad I don’t have to leave my glasses there since I do use them at nighttime.

With all the bad luck I had with medical stuff last year, it’s really nice that the good luck is continuing this year. I never thought my eyes could get better, but now that I know it’s possible I want to see if there is something I can do to try to help make this continue. I know that I will not be able to fully correct my vision on my own, but it’s always a good thing to have my vision better than it was before.

Another Therapy Check In (or Someone Sees Progress)

I only see my therapist every six months now, and my visit with him was this week. So much has happened in six months and I was trying to think about what I wanted to talk about with him before I went in for my appointment. I know that my time there is limited and I wanted to maximize my time. I knew that not everything was relevant to talk about, but I still took some mental notes on what I wanted to make sure we go over.

A lot of my appointments with my therapist are pretty basic check ins. He wants to make sure that I’m still making progress and doing ok on my medication. But there isn’t a lot for me to work through in therapy anymore. Coming to the realization that I just have bad luck genetically with getting an eating disorder has helped me a lot. I know that I didn’t do anything (or have something happen to me) that caused this and I just have to work on getting through it and figuring out good recovery tools for myself. Sometimes knowing that is tough, but it does make my therapy appointments easier.

The first update we discussed in my appointment was me not having the liver surgery. Even though my therapist has access to all my medical records, I knew he wouldn’t have reviewed everything that has happened lately. He was very excited about me not needing surgery and was asking what might have caused the tumors to shrink. There is really no medical explanation for it, but he agrees that my tumor visualization might have been a big part of it. Our minds are really powerful and can do miracles. He agrees that I should keep that up and see what happens when I have my next MRI in a few months.

We also talked about how I was struggling a bit with the idea of preparing for surgery for so long and then that just stopping. I told him how the unknowns unnerve me a bit and that I was finding it tough to reconnect to myself. I still struggle with a bit of disconnection with my body and I don’t know if that will ever be resolved because even if the tumors go away they could come back another time. My therapist understood why this is so tough for me, but he was encouraging me to work really hard to get through it.

He was talking about how we cannot set expectations for life and then fall apart when they don’t happen. Things can change and we have to be ok with going with the flow. And when something doesn’t go our way, we have to let go of the idea of what we thought would be and start thinking about what is. Obviously, those things are easier said than done, but I do need to work a lot on that idea. And to have him tell me that it’s ok that I struggle with this idea made me feel better because sometimes I wonder if it’s just me who seems so rigid in these ideas.

Even though there are things that I’m struggling with, the main things that my therapist was saying to me were all positive things. He said that he can really sense a change in me and sees that I’m so much happier. He can see that I’m figuring things out and I am making progress. I don’t always see the progress, but I know it’s easier for someone on the outside to see it. He knows that even if my eating disorder isn’t getting better right now, I’m building the skills and gaining the tools I’ll need to be in recovery. So eventually it will all connect and come together and I’ll be better equipped to be in recovery.

We also started to talk about the future and when I will be going off of Vyvanse. I cannot be on this medication my entire life (nor do I want to be on it forever). I am not in a place to be off of it just yet, and in fact we actually made a small increase to my dosage. But we went over how this is just a temporary tool and how I need to be preparing myself to eventually not have the crutch of the medication to help me through the day. It’s a bit scary to think about going off of it because when I don’t take it for a random day off, I notice that things aren’t as great. But to start working through an end plan is something that I know I need to do.

The biggest takeaway I had from this appointment was that I am making progress and improving even if I can’t see it yet. Getting to see myself through someone else’s eyes (and someone who has a critical viewpoint) is pretty powerful and really helped me feel more settled in what has been happening. My therapist wants me to focus on being more in the moment and accepting things as they come. If I am going to have a binge episode, he wants me to do it because I chose to do so and not because my eating disorder is putting me on auto-pilot. I’m getting much closer to that point so it’s good to know that that’s actually progress.

I won’t have my next appointment until December (6 months from now) unless something crazy happens and I feel like I need to be seen sooner. But I’m feeling much better about where things are now after this appointment. Some of the doubts I’ve been having have been reassured as good things and I’ve been given homework to try to work on over these next 6 months. Hopefully when I go back to see him again, he will continue to see progress and be happy with the steps I’ve made toward recovery.

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

Today I should be going to my pre-op appointments for my surgery. But that has been cancelled because my surgery was cancelled! This is totally not what I expected but it’s true! But I should probably explain a bit of what has happened over the past few days.

When I found out that my tumors were adenomas, I learned quite a bit about that type of tumor. One of the main things that I learned was that they are a 1 in 3 million side effect from hormonal birth control and the best way to stop them from growing more is to stop the hormonal birth control (or whatever hormonal treatment you are taking). But in almost all the case studies, it says that the tumors have to be surgically removed as they typically cannot shrink. And if they do shrink, it’s only a little bit.

One of the reasons I was waiting a few months to have surgery was to hopefully have the large tumor shrink a little bit. The smaller the tumor is, the easier the surgery will be. The large tumor was almost 10cm and in my head I wanted it to be under 8cm. I knew that would take a miracle, but I spent time every single day working on visualization and just trying to be as healthy as possible. But I also knew realistically that the chances of the tumors shrinking were really slim and that’s why I’ve been working so hard lately to get ready for surgery.

I had my MRI last week and I figured that I’d learn about what the tumor situation is like at my pre-op appointment. But on Tuesday afternoon, I got a phone call from my surgeon. Not only did my tumors shrink, they shrunk significantly!

My 10cm tumor is now about 4cm, one of my 3cm tumors is now about 1cm, and my other 3cm tumor is not able to be found anymore! This is seriously a miracle! My surgeon has never seen this happen with any of his cases before. There is no medical explanation for what happened so I’m just considering it a medical miracle! I know that there is some serious power behind positive thinking, but this is beyond what I ever imagined could happen!

While there are still issues that can happen with having the biggest tumor in me, it is no longer as serious as it was before. The size of the tumor and how it is situated in my liver now makes it something that I could live the rest of my life with. It would still make being pregnant in the future a bit risky, but nothing compared to what the risks would have been if it stayed the original size. And I still cannot use any hormonal treatments as long as the tumors are in me.

But since my life isn’t as threatened as it was before, the plan now is to cancel the surgery. My surgeon gave me the option to continue with it, but it is not his recommendation anymore. Instead, his recommendation is to do another MRI in  the fall to see what’s happening if the tumors then. If they are bigger, I will have surgery. If they stay the same size, I will probably have surgery. But there is now the chance that maybe they will shrink even more and maybe disappear completely. This is not normal with these tumors, but nothing is ever normal with my medical situations.

I completely trust my surgeon’s judgement and he has been very open and honest with me about the risks to keep the tumors in and the risks of surgery. He has answered so many of my questions (and there have been so many questions!) and I never felt like he was getting annoyed with me. I’m very lucky to have a surgeon who has been so awesome and I’m glad that he told me honestly that he doesn’t recommend surgery for me right now. If he left it up to me, I probably would have been going back and forth on what I wanted to do.

I’m totally excited to not need to have surgery. This surgery would have been major surgery and there are always risks when you have any surgery. And this one would have had more risks than any other surgery I’ve had before because of potential blood loss and other complications. And I was not looking forward to recovering and not being able to do everything that I’m used to doing.

But at the same time, I do feel a bit weird that I’m not getting rid of these tumors. I’ve been focusing on how glad I will be to have them out of my body that the idea that they are staying is a bit odd. I’m sure that a lot of it is just shock right now and I still can’t believe that I am lucky enough to have my tumors shrink without medical intervention. Soon enough I bet I’ll just be happy that I didn’t have to disrupt my life with a major surgery and the idea of keeping the tumors in me won’t be as weird. I also feel like I was overreacting before with getting ready for surgery, but honestly there is no way we could have known this would happen to me. If my surgeon has never seen this happen before, why would I ever expect it to happen to me?

This is seriously a miracle and I just want to thank everyone who has sent positive and healing thoughts my way or who have kept me in their prayers. I don’t know how this happened to me, but I’m so grateful that for now I don’t need to have surgery next week. My parents will still be coming to town, but now we get to spend a couple of days having fun instead of them having to be here to take care of me while I’m recovering. They don’t come to LA that often and when they do it’s usually for a super short time. So I’m pretty excited to get to spend almost a week with them in LA!

If anything changes or if something doesn’t feel right, there might be a tumor update within the next few months. But if everything keeps going the way they have been going, I won’t have anything to blog about regarding my tumor until my next MRI in the fall. It’s crazy how quickly this chapter of my tumor journey is closing, but I guess since it started in such dramatic fashion that it’s fitting it is ending the same way!

MRI Time (or I Think Being Calm Is Helping)

I had what should be my last pre-surgery MRI this week. I needed this MRI so that we could see if any of my tumors have shrunk in the past few months. If they have shrunk, that will help me keep more of my liver during the surgery. It’s ok if they have to take some out since it does regenerate. But it would be nice to need less of my liver to regenerate because the tumors are smaller.

I previously had a monthly challenge to work on visualization to help my tumors shrink. I won’t know if this worked until I see my surgeon for my pre-op day, but I’m feeling happy with the work that I had done. I don’t feel like there is anything else I could have to help them shrink. And if they don’t shrink, that’s ok too because it wasn’t a guarantee they would get smaller after I stopped hormonal birth control. I’m prepared for anything when I see the MRI results.

Before a year ago, I had only had 1 MRI in the past and that was for my hip. But since then I’ve had 1 breast MRI and 2 liver MRIs before this most recent one. So this one was my 4th MRI in under a year. And all of those MRIs involve contrast which means I had to have an IV put in (which isn’t fun since I still don’t do well with needles). And while I’m not super claustrophobic, being inside the MRI tube isn’t fun and it can feel like the sides of the tube are closing in on me. I’m lucky because my head is toward the outside of the tube so I can tilt my head back and see a bit of the room behind me, but it can still feel very closed in.

For the MRI this week, I was feeling a bit stressed about it. Some of the stress was unnecessary (like feeling guilty that this was during work time but I had already banked the hours to cover it) but I also know that I’ve done well in past MRIs and just wanted to make sure that I would be the same this time. I’m always worried that for some reason things will be different this time (I’m like that with the dentist) and I just wanted to have a smooth MRI day.

Things started off rough with me getting there 4o minutes early because I had put it in my calendar at the wrong time, but I figured that is better than being late. And when I checked in, they let me know that they were running 30 minutes behind so I was worried I wouldn’t be home to start work when I told my manager I would be. But somehow, they ended up getting back on time quickly and I was brought back to the MRI area only 5 minutes after my appointment time.

I feel like a pro at MRIs now. I know not to wear things with metal on it so all I had to take off when I was going in was my sweatshirt and my shoes (the tech there was impressed that I wore a sports bra with no metal clasps and knew to do so). I got onto the table and the techs got everything set up with the various pillows to have me in the right position for the MRI. And then I got my IV in (I had warned them that I pass out but I came back very quickly and it wasn’t too bad) and got into the MRI tube.

Since this was my 3rd abdominal MRI, I knew that I would hear prompts to hold my breath at various times. The first time I had to do this, I wasn’t really prepared and since I was nervous it was tough for me to hold my breath when I needed to. This time, I focused on taking steady deep breaths when I didn’t have to worry about holding my breath. When I had to hold my breath, I tried to count in my head to distract myself. And I tried to zone out while the machine was going since it is so loud and can make it seem more claustrophobic for me somehow.

I have to say that this MRI was the easiest one that I’ve done. It does help that I knew what to prepare for, but I could have said that for my second liver MRI and that one still wasn’t as easy as this one was. When it was done, I was actually very surprised it was over. I thought that maybe we were only halfway through or something. But it had gone really easily and I never felt too panicky or anxious while in the MRI tube. The worst part was when the dye went in my IV, but it was not bad at all and more just a weird sensation in my arm.

I really wished I could have looked at the computer to look at my tumors. I know I couldn’t read it properly, but I am curious what things look like now. I did get a little glance at one image from my MRI where you could see the 2 smaller tumors. But since I’m more familiar with the big tumor, I can’t tell too much from looking at the image of the other ones.

In about a week, I meet with the surgeon to go over all of this and to do what should be the final pre-op step. I’m a bit anxious to hear what he will say, but I know whatever he says that things will be ok. I’m going to continue to focus on being calm and taking deep breaths since that worked so well for me in the MRI. I never expected that test to go as smoothly as it did so clearly this plan is working for me. Hopefully it works for me while in pre-op appointments, surgery, and recovery too!

A Good Therapy Check In (or Focus On The Good)

I had an appointment with my therapist this week. Since I’m only seeing him every 6 months now, there have been a lot of things that I figured we would discuss. Obviously, we would be discussing my recovery but I knew there would be so much more to talk about in the appointment.

When I got called back, my therapist asked how I had been. My first response was to ask if he had seen my regular medical record because if he hadn’t there was a lot to update him on. He mentioned that he had seen some of it, but asked me to fill him in. So I gave him the story about the tumors in my liver and all of that stuff. It’s a lot to take in and I’m sure it sounds super overwhelming for someone who hasn’t heard it before. But to me, it’s not a huge deal and I can almost tell the entire story in a single breath. I’m wondering if it will seem like a bigger deal to me the closer to surgery I get, but for now I’m not thinking too much about it.

My therapist asked me how I was feeling about the tumors and if I was letting that affect my recovery, and I let him know that I was working on focusing on the positives as much as possible. Negative thinking isn’t going to change my situation, so I don’t see the point in wasting time on doing that. I’m going to have surgery and I’m trying to plan on making it as positive of an experience as possible (including telling all my friends that they have to come visit me when I’m in the hospital).

We also discussed the issues that I’m having right now with food. I’m worried a lot of the issues are related to hormones (or lack of synthetic hormones) and I just need to learn how to deal with this because this will be my reality for the rest of my life. I’m having more bad days than I would like right now, but I know that this is an adjustment period and it will get better. It’s unfortunate I have to deal with it, but again, thinking negatively isn’t going to help me at all.

My Vyvanse dosage was also discussed at the appointment. I’m getting close to having been on the medication for 2 years and I think we are finally at a good dose for me. I think it could work better if I was on a slightly higher dose, but I want to wait a bit to see if that is how I feel in another 6 months. I don’t want to keep increasing the dosage because there is a limit to how high the dose can be and I don’t want to keep increasing it until I get to that point. I’d rather be on the conservative side of things and increase them later.

We really didn’t have a ton to go over in the appointment. I am doing pretty great even though sometimes I don’t feel like that. My therapist feels that I’ve shown a ton of improvement over the time that I’ve been seeing him and he thinks that things are just going to get better and better. He said a lot of that has to do with me taking responsibility for bettering myself and not trying to depend on medication only. The fact that I’ve been doing monthly challenges are impressive to him and I think he’s still surprised that I’ve been keeping up with my happiness checklist.

But the thing that my therapist feels has been the most beneficial to my recovery so far has been my positive attitude. I rarely put myself in a victim mentality and I believe in the power of positive thought. Even though there isn’t any scientific evidence to prove this, positive thinking can do wonders for a person. You can do things that others may have thought to be impossible. I’m hoping that positive thinking will help my liver tumors shrink before my next MRI so that my surgery will be easier than expected. And in a few months I will hopefully see the results from that.

The positive thinking to get into recovery may take longer, but my therapist and I agree that those results will come for me one day. I just have to be patient and willing to wait it out until things get better. I’m happy to do that because I know it is in my future, but I do wish the timeline would speed up a bit!

The ending point of my therapy appointment was that I just need to continue doing what I’m doing. Thinking positively and looking at the good in situations is working for me and it will continue to work for me as long as I keep working at it. My next appointment with my therapist will be in 6 months, so that should be after my liver surgery. I hope that I will be able to update him that the positive thinking did a great job with getting my body ready for surgery!

And after all that discussion about positivity and good out there, I walked out of my appointment to see one of the most beautiful sunsets I had seen in a long time.

I’m taking that as a sign that good things are coming my way!

An IUD Experience (or I Wish I Knew It Could Be This Easy)

Warning for my readers (especially the guy readers): This post is about my experience getting an IUD. I’m not shy describing stuff so just know that if you read today’s post.

With the liver tumors, there isn’t much for me to do between now and my next MRI in the spring. I just have to hope that my body will decide the tumors should shrink so things will be easier. I don’t have to change pretty much anything in my life because of them with one exception. I had to stop taking my birth control pills.

I’ve been on the pill since I was 18 and it was weird to stop taking them. But knowing that the hormones in them were what caused the tumors (literally a one in a million complication) made it a non-negotiable thing for me to stop. Ironically, I had to stop hormonal birth control but right now pregnancy could be extremely dangerous. I needed something to make sure I won’t get pregnant before my surgery (even though that is not really a concern for me), and non-hormonal options are pretty limited. But since hormonal options will be out of the picture for me for the rest of my life, I figured now is the best time to figure out what I want to do.

I have a very open relationship with my family. It helps that my dad was an OB/GYN and there is no shame or embarrassment to discuss things with him or anyone in my family. And everyone in my family agreed that I should get an IUD. Several women in my family have them and love them.  And since there is a non-hormonal option (the copper Paragard), my OB/GYN agreed and scheduled me a time to come in and get one. While getting an IUD was something I thought about doing for a few years, I wasn’t too happy about having to get one. This wasn’t totally my choice, but I knew it was the best thing for me.

Of course, I reached out to all the friends and family I know who have an IUD to ask them about their experience. Mainly, I was terrified about the pain I might have with the insertion. I’ve read it can be very painful when you haven’t had a baby yet and I’m not a fan of pain. But since my OB/GYN knew how scared I was, she prescribed me some things to make it easier. I already have prescription motrin for my hip, but she also wrote a prescription for 1 dose of Valium to keep me calm and 2 doses of Codeine to help with the pain before and after.

Since I was going to be pretty loopy going to my appointment (I had never taken Valium before so I had no clue how I’d react), I had a friend who has an IUD drive me. I knew she’d be able to help keep me calm and would be a good person to have with me after if I was in a lot of pain. So this week, I had my appointment and I wanted to share my experience because I think it is important for people to know what it is like.

I took the painkillers about an hour before my appointment and felt fine with them. I’ve taken those painkiller before and knew I wouldn’t have any weird reactions. But when I took the Valium, I got loopy right away. I was shocked how fast it got into my system but was grateful that it did calm me down significantly. But when my friend picked me up, I knew I was acting weird. My brain and mouth felt disconnected and I couldn’t get out what I wanted to say. I was slurring (my friend said I sounded drunk or someone who was in the middle of dental work) and I couldn’t think of words that I wanted to use. I don’t like being out of control like that, but I knew it was for the best.

I was still nervous when I got to the appointment, but fortunately my OB/GYN is a family friend and was willing to work on making this as easy as possible. After doing a pregnancy test (they are required to do it even though I knew there was no risk of me being pregnant), my OB/GYN decided that the best option would be for me to get a shot of lidocaine. Most OB/GYNs don’t do this because getting a shot in your cervix can be very painful and can be worse than the IUD insertion. But for me, I didn’t really feel the shots. I didn’t know she did the first one and for the second one I didn’t feel pain but did feel a slow mild shock going up one side of my abdomen (it was on the side that the shot was going in on my cervix).

After the shot, we had to wait about 5 minutes for it to take effect, so we were just chatting and catching up on random things. I also told my doctor that I was totally going to be blogging about this so she took the IUD out of the box so I could get a picture of it before it went inside me.

You can see that the IUD is pretty small. The device it is in is the thing that is used to put it in your uterus (the arms get folded down before insertion, but I wanted the picture of it before it got folded down). Even though I knew IUDs are small, seeing it before the insertion did make me feel better. I don’t know why I needed more reassurance, but knowing that it was tiny and the device to insert it is smaller than a straw was good.

After I was numb, the next step was to measure my uterus so my doctor knew how far to insert the IUD. They used a device to hold my cervix open, but I didn’t feel it at all. I thought I might feel some pain or pressure, but when my doctor told me it was on there I was shocked because I had no idea. When she used the sounding device to measure my cervix, I felt that a bit. But I only felt it when it hit the top of my uterus and it was a little pinch (less than a shot or needle stick for an IV). I jumped a bit when that happened, but again it was significantly less than I thought it would be.

Finally, it was time to get my IUD. The IUD is loaded up in the insertion device and then it was placed in my uterus. I didn’t feel it at first, but as my doctor was placing it and getting the arms to pop out that was a weird sensation. I don’t know how to describe it. It wasn’t painful but it was odd. It almost felt like something was trying to pull my insides out of my body. It lasted maybe 3 seconds and then it was done. Then my doctor trimmed the strings of the IUD (I felt nothing) and the worst was over.

The final step was having an ultrasound to make sure the placement looked good. My doctor turned the screen so I could look at it too and she pointed out where the IUD is and where my uterus and ovaries are. It’s not easy to see in the image, but the long straight line in the center is the IUD.

The placement looked good to my doctor and we were done! If you don’t count the 5 minutes we waited for the lidocaine to take effect, the entire thing was probably less than 3 minutes. And I’m aware I had more painkillers than most people and I got the lidocaine shot too, but this entire process was pretty close to painless. Getting an IV for my liver MRIs were more painful than this process.

I have to go back to my OB/GYN in 6 weeks to have the placement checked again, but if everything looks good I’m protected against pregnancy for 10 years! There are no hormones in the copper IUD so it won’t affect the tumors at all. And if I want to have kids within the next decade, it’s pretty easy to have this removed.

I know that most people have much more difficult experiences than what I had. Even after the lidocaine wore off, I wasn’t in much pain. I have a small cramp in my lower abdomen, but it’s a pretty dull pain. I am still taking motrin as a precaution and after getting the IUD in I used a heating pad that night. But this was not unbearable at all. I know this could get worse later, but I’m not too worried about that. The thing that scared me the most was the insertion and I was laughing after it was done about how easy it was. If I had known that before, I probably would have gotten this years ago.

While I still wished that this was more of my choice and not something that was my only option, I’m glad I did it. I’m glad that I was able to manage the pain with the options I was given and that the experience was easy. All of the stress and worry I had before was so much worse than anything I experienced in the appointment.

I want to thank everyone who shared their stories of getting an IUD with me when I reached out for advice. You were all right that it wasn’t bad and that I was worrying more about it than I needed to. And if you are considering an IUD, know that while it can be painful that pain is usually over pretty quick. And maybe you will be lucky like I was and have an almost pain-free experience. Feel free to reach out to me through the comments or the contact form if you have questions or want to contact me about this. Obviously I’m an open book and happy to share whatever I can with you all.

Meeting A Surgeon (or Working On My Liver)

After I found out that there might be a cyst on my liver, there have been a couple of different medical tests I’ve had to do. I had to do another MRI with contrast and some more blood work (both things involved needles) so that the doctors could figure out what was going on. I knew that there was something wrong (I didn’t believe that the situation could just be one big mistake), but until this week I really didn’t know exactly what was happening. I just knew that something didn’t look normal but nothing looked so horrible that I had to rush to get tests done.

I tried to avoid looking things up online because if there was a cyst there are so many types of cysts that I don’t know what to look for. And if it wasn’t a cyst, I had no clue what it could be so trying to research things was pretty pointless. I figured that when I met with the surgeon I had to meet I could ask him all my questions and try to understand what was going on. I made a decent list of questions to ask him and went to my first consultation with this surgeon this past Monday.

The first thing that I learned was that I don’t have a cyst in my liver. I actually have a benign (non-cancerous) tumor in there. I know that the word tumor sounds bad, but this may actually be better than having a cyst in my liver. The tumor is both inside and on the outside of my liver and it’s pretty large (not as large as they thought, but still close to half the size of my liver). This is not an urgent situation and I’m not in any pain, so there’s no need for me to panic.

This tumor is likely one of two types of tumor. One type doesn’t have to be removed and is a relatively common type of benign liver tumor. The other type is a rare type of liver tumor that is almost only seen in women around my age who take birth control. The tumor is a side effect of the birth control hormones (but a very rare side effect) and it would need to be removed. Because the tumor doesn’t present like how either of those types of tumors look, I have to do some more medical testing. But I did get a good laugh out of the fact that my tumor is not typical since it seems like all my medical issues present as atypical and I’d expect nothing less from this.

The surgeon I met with was really amazing. He was fine answering all my crazy questions I had and let me take pictures of the MRI images so that I could show them to my family. And he was explaining as much as possible about the tumor to me. It’s tough to explain it when he’s not sure what type of tumor it is, but he did his best. I’m really happy that this is the surgeon that I randomly got paired with to work with on this. Some doctors don’t understand my need to understand things as detailed as I do, but he was almost happy to find out that I want to know things and make educated decisions.

While I was hoping that at this appointment I would get a proper diagnosis, plan, and find out if I need surgery; I’m ok with this just being the first step in whatever this journey ends up being. It’s going to either be something to monitor for the rest of my life or be a surgery sometime next year so I’m not in a rush. I want to make sure everything is understood before decisions are made and that’s what’s happening. I’m hoping I’ll have the additional testing (which will be another MRI and possibly one more test) in the next week so that I can have some better answers by Thanksgiving. That way I can discuss things with my parents in person (they help me make all major medical decisions since they worked in that field).

No matter what type of tumor this ends up being, I’m going to be fine. There is no reason anyone should worry about me. I’m not in any pain (my stomach pain had nothing to do with this and was possibly a really severe stomach flu) and there are no restrictions on my lifestyle right now. I can do everything I’ve been doing and I don’t need to worry about this hurting me or causing major issues right now. While it’s not great to have something in your body that isn’t supposed to be there, this isn’t a huge deal and whatever ends up being the plan will be just fine. I promise to keep you all updated as I have more information!