My Thymectomy

Planning for the End of It All

I’m at a conference this week in Washington DC, so I’m reposting some old favorites from the beginning of my blog. I’ll be back with fresh content next week and – in the meantime – keep up with me on Instagram to see highlights of my trip.

This post originally appeared on my blog on April 6, 2013.

A few months ago, I planned my funeral.

While I am a planner – an over-planner, really – this didn’t have anything to do with getting ahead or being prepared. This was a necessity. Last year, I found myself facing the very real possibility of a life-threatening illness. Before I had to get on the table for a median sternotomy to remove a [then mystery] tumor, my husband and I sat down to for an extremely difficult discussion.

What did I want to happen? It was so hard to think about; I wasn’t ready. I had family and children to think about – graduations, marriages, grandkids, so much to see. I didn’t want to think about the end of it all at twenty-nine years old. But I did, because it had to be done.

If something went wrong, I wanted to be given some time for the chance of recovery, but didn’t want to be kept alive just to avoid the inevitable. It would be a difficult decision for my husband, but I knew he felt the same way I did.

I didn’t want a viewing unless my parents requested it – I find them creepy. I wanted to wear my favorite dress with the red sash. I wanted a few hymns, but mainly calm, folksy music (think Mumford and Sons). I did not want any kind of photograph slideshow. I wanted Dougie MacLean’s The Gael and bagpipes (not necessarily the real things). No, we aren’t Scottish. I guess I just have a flair for the dramatic.

I didn’t have a preference over burial or cremation. I have an irrational phobia of closed caskets – either way I was going to have to go in the box, so I was flexible. Really, who isn’t at that point? I didn’t want to end up on a shelf somewhere though, so we decided on spreading or burying the ashes if he went with cremation. Somewhere pretty was my only request – I don’t really have strong feelings about any particular place. I’ve always been largely unattached to my physical surroundings.

I wanted to write letters to my children, but I couldn’t get myself together to do it. Instead, I bought a recordable book of The Night Before Christmas. Recording that was a hard evening. It was something so simple, something people do every single day, but for me it represented a life where my children grew up forgetting my face, my perfume, my laugh. It represented what would be left of me.

I asked my sister [both only children, we chose each other] to do all of the fun girly things with my children if I couldn’t do them myself. My husband and I discussed insurance plans, finances, passwords. I made an appointment to get my hair dyed – no reason to meet my maker with my roots showing. I made jokes about the situation [see: hair dye]. It was all very practical.

We held hands. We hugged. I cried. I’ve never felt that kind of fear.

I came through ok. The surgery was major, but uncomplicated, and the tumor was benign. In the end, I didn’t need any of my plans. It changed me though. I will never again be that person I was before the diagnosis. I’m learning to work with the new me now – trying to find a balance between living life to the fullest and avoiding unnecessary risk. I don’t think anyone would ever describe me as fun-loving, but I try to be easy and frivolous. I try to love every single day.

PSA: The Scar

I have a big scar on my chest. It is still red and expands into a silver dollar-sized circle at the top. I would have to wear turtle necks every single day to hide it, so you are probably going to notice it. That is fine.

Here is what you should do when you notice it:

1. Stop looking.
Okay, you saw it. Not stop being creepy. At this point you are just staring at my breasts.

2. Don’t ask questions.
There are a few exceptions to this one. It is okay to ask about my scar if you are:

  1. a child
  2. mentally disabled
  3. sporting a similar scar
  4. facing surgery that will result in the same scar
  5. an acquaintance I haven’t seen since before surgery (although at this point, that is unlikely)
  6. a new friend

3. Smile and move along.
The smile is optional, but I’m a southerner so let’s assume you will smile.

And done! Now, wasn’t that easy?

Look, it is great that you grandma had open heart surgery, came through it all okay, and has a similar scar . . . but I just don’t care. You are a stranger. Plus, I just told you it wasn’t heart surgery when you so rudely inquired into my medical health. The fact that your memaw* had clogged arteries doesn’t make us bosom buddies.

*It is almost always a memaw when I end up in these situations. Wonder if that is significant?

I tried to take a good photo of my scar to share with you all, but it ended up being mostly boobs and I just don’t want to share that here. I’ll leave you with Tina Fey instead.


My median sternotomy and thymectomy: Part V – Home

When I was preparing for the surgery, my surgeon explained that I would not have as much pain and difficulty since I was young. At first, I couldn’t understand why I was in so much pain and getting passed in the hallway by elderly patients with their iv poles. A little talk with the nurses (with the exception of one dud, I liked all of my nurses), cleared up the confusion a bit. They explained that while my recovery period would like be a breeze in comparison to elderly patients, their experiences over the years pointed towards more pain for younger patients post-surgery. One older nurse in particular told me that she often had 80 year-old patients just needing Tylenol when they left the hospital and 30 year-old patients leaving with strong prescriptions. Gee, thanks surgeon. You could have explained a little better.

I left the hospital with hydrocodone and I needed to take it pretty much every four hours consistently. The drive home was similar to any surgery – bumps were painful, but I made it. I wasn’t able to sit on my couch when I first got home; it is a low, modern sectional and I couldn’t get back up off it at first without pain. My husband moved a recliner from the little man’s room into the living room and it became my seat, dining room table, and bed for the next few days.

Sleeping flat was still out of the question when I came home. If I ended up “too flat” (and that changed from day to day), I had pain from the pulling on my incision, interior pain, and the sensation that I had a big metal plate sitting on my chest. I didn’t sleep well, but I slept a lot. At first, the pain meds knocked me out. Then they started to give me insomnia (not to mention constipation) and my sleep schedule somewhat flipped. After a little bit in the recliner, I moved onto my couch, but still propped up into a leaning position. All I wanted to do was curl up on my side or – better yet! – on my stomach. I was stuck on my back for a month before I started to have a little more flexibility in sleeping positions. Even when I could sleep in a flatter position and moved back into my bed, it was helpful to elevate my arms a bit so they didn’t pull at my incision.

I could not do anything for myself. Not anything. I wasn’t allowed to lift anything heavier than five pounds. I don’t know if you have noticed, but everything is heavier than five pounds. I think my peppermint mocha this morning may have been heavier than five pounds. Need a glass of milk? Ask someone. Need to open a heavy door? Ask someone. Need to open a tough jar? Ask someone. Feel like you are useless and want to do some chores? Too bad, sit back down.

Range of motion was also a problem. I couldn’t really stretch to pick anything up or put on my clothes. I left the hospital without my compression bra on, but it only took a couple of hours to realize that was a mistake (again, boobs are heavy). I had my husband help me into a sports bra. It is pretty difficult for another person to put a piece of tight clothing on you when you can’t put your arms up hardly any. Even when my range of motion improved, I kept getting stuck in situations I couldn’t get out of. One night, I tried to put on this tight long sleeved shirt. I got stuck. Even though I could put on other shirts by myself, I didn’t have the strength to stretch the shirt onto my arms. Go figure. I put my socks on by myself two weeks post-surgery. It was a facebook-worthy moment.

I also got out of the house for the first time two weeks post-surgery. That was the first time I felt comfortable riding in the car. My pillow stayed with me at all times for coughing, getting up, and difficult movements. Eventually, I picked out a nicer small pillow that I didn’t mind carrying around in public. It is still on my couch today. When I felt more comfortable leaving the house, fatigue was a big problem. I had to carefully plan so I wouldn’t get stuck in the back of Wal-Mart without the strength to keep going.

During recovery, I had regular appointments with my surgeon. At the first appointment I had an x-ray to make sure the bone was healing properly. Since everything looked okay, this was the only post-surgery x-ray I needed. Aside from that, the appointments were mostly to check my incision and to make sure I was doing enough activities, but not too many activities. Delicate balance and all.

Speaking of the incision – my scar is right in the middle of my chest and starts a couple of inches above my boobs. It is about eight inches long with three small spots underneath from the drains. It is not pretty. Overall, my scar spread and is wider than expected. Also, the very top of my incision did not heal properly. It scabbed over and the scab fell off early revealing a dent. It looked like someone put their thumb on my chest, pressed down and rotated into a circle. Basically, it was still healing, but now had to steal from the bottom up. When I got out of the shower in the morning, I had to lean over to let the water run out of it. I wore a band aid over it until it was completely healed. Now the top of my scar spreads into a quarter-sized circle. I may decide to see a plastic surgeon about it in the future.

I went back to work after two months, although I did work a few hours a week at home for a couple of weeks first. I still couldn’t pick much up and the fatigue was a problem, but it was nice to be back to normal.

One year post surgery: My scar is still slightly red. My sternum stopped hurting when I coughed/sneezed/hiccupped/twisted my body about six months ago. It stopped aching when the weather changed about two months ago and now only does it occasionally. I still have some soreness with the muscles in my upper chest and shoulders, but this is likely more about my scoliosis and the surgery instead of just the surgery.

My median sternotomy and thymectomy: Part IV – Hospital, cont.

I’m not going to try to do a day-by-day run-down of the rest of my time in the hospital, just some of my overall impressions and thoughts. I stayed in the hospital for 5 days total. Every day was better than the last, but every day sucked.

Respiratory: Respiratory therapists starting coming in to check on me regularly almost immediately. I was tasked with blowing into my little spirometer every hour I was awake to slowly get my lung capacity back up. Deep breaths followed by coughs. The coughs hurt. This is the part of a sternotomy that everyone seems to be aware of – hugging a pillow tight to your chest while coughing. That pillow, man . . . it is a necessity. So, the coughing. It hurt. Anything that moved that part of my body hurt and I could feel my bone slightly grinding if I didn’t have the pillow tight enough. Plus, all of my chest muscles hurt. It almost felt like they had been ripped apart. Huh, imagine that.

Getting up: I got out of bed on the morning after surgery. The nurse removed my catheter and my only requirement was to get to the bathroom and try to pee. It was hard at first. Standing up straight was difficult. I had a nurse on one side and a family member on the other to make sure I didn’t fall. After the first day, I just needed someone next to me as a precaution, but at first their support was extremely important. The first walk, as I reached the bathroom, I felt the need to cough. I managed to squeak out, “I need to cough. This is going to hurt bad, right?” to the nurse before coughing. And then screamed. I actually screamed. I’ve never felt pain like that. I was embarrassed that I screamed, but I just wasn’t expecting the pain. It is hard to describe; the best way I can explain it is like being stabbed from the inside every time I coughed. Once I knew what to expect, it was better, I guess. It still hurt like a bitch – for a long time, long after I came home – but I didn’t get caught off guard again.

Sitting up and walking: After I got out of bed for the first time, I was encouraged to sit up and walk around more and more. I had a spare wheelchair in my room and would use it as makeshift walker. Eventually, I started going on walks down the hallway and at some point, my mom started pushing the wheelchair for emergencies as I walked beside it. [I should mention – my husband got sick while I was in the hospital. I had to kick him out when he said he felt like throwing up and my mom stepped in for her turn as caretaker for a couple of days.] I didn’t really like sitting in a chair. It was very difficult to get back out of the chair I had in my room, so I mostly just used the side of my bed. By the fourth day, I could move back and forth to the bathroom without any support or extra precautions. I found the best way to get out of bed was to move the top part forward as much as possible. I then could be sitting straight up and slowly work my legs off of the side. This was a surprise to me – I didn’t really have the ability to rotate my upper body, so just swinging my legs off the side normally wasn’t an option. It took some work to figure it out. That was a bit shocking for me; something that I did every day without a second thought was now a carefully orchestrated process.

Eating: My appetite didn’t return to normal until the third or fourth day, but I started eating some on the second. I nibbled mostly. The toradol I needed for my stomach made my mouth extremely dry and I remember laughing hysterically [ouch!] with my mom as it took me nearly five minutes and half a glass of water to chew and swallow a bite of biscuit. There were no restrictions on what I ate.

Drains: The small drains came out on day two. The big chest drain came out on day three. That chest drain was awkward – I had to load the bubbly thing up into my wheelchair when I wanted to walk around. I hated the feeling of it moving around inside my body. I had already learned from the internet that removing the big drain wasn’t exactly painful, but was very uncomfortable. I held my mom’s hand and the surgeon just pretty much pulled it out in one swoop. It felt like most of my inside was going to come with it, but it didn’t of course. Once it was over, I had no pain or problem with any of my drain sites.

Bathing: I couldn’t take a bath until my last day in the hospital, so it was sponge bath city for me. I’m sure some of the elderly patients on the ward needed help from a nurse for this, but I was mobile enough to make due with just family and my private areas covered. I didn’t feel yucky, but my hair was a mess. I needed a headband from the gift shop to be presentable. I suggest bringing a hat.

TMI, bathroom time (you may want to skip this): I had great difficult wiping myself after using the bathroom. My range of motion was severely limited and I couldn’t rotate my body at all. I had to ask for help from the nurses every single time. You can imagine how embarrassing and degrading this was. Eventually, on the very last day (don’t know why no one else thought to show me earlier), a nurse showed me how to increase my range of motion by leaning forward and slightly squatting. It was very helpful. Not 100%, as I’m fat and that got in the way, but helpful.

My median sternotomy and thymectomy: Part III – Hospital, Day One

loadBinaryCAERMIFEThe first day was the hardest, as you might assume. It only took an hour or so to figure out that morphine was not the best drug for my pain – the relief was immediate, of course, but it wore off fast and hard. When I had my c-section I had a pump, but not this time. I was dependent on the nurses getting me the medicine asap when they had so many other people to look after. They switched me to pills fairly quickly. Slower to take effect, but long-lasting with a more gentle wearing off period.

Pain medication makes me queasy. Very queasy. Always has. Every time I called a nurse for my pain medication, I asked for toradol too. After a few oh-my-god-please-hurry emergency buzzes, they started to bring it automatically. Vomiting was just not going to happen.

Surprise #1: I was offered a meal immediately. I didn’t eat it. First, I was fighting to keep my stomach quiet from the pain medication. Second, I didn’t have an appetite at all. I didn’t expect to be allowed to eat that day at all (I don’t think anyone told me that, I just assumed), so this bit of normalcy was encouraging, even if it was unwanted.

My physical condition: I had three small bulb drains and one large chest drain attached to a bubbly thing on the ground (no, I’m not going to look up what it is called). The small drains sometimes got in the way when I moved around in bed, but weren’t uncomfortable. They had to occasionally be emptied. The large tube coming out of my chest was a different issue. It wasn’t exactly uncomfortable either, but I could feel it move around inside my chest. If a nurse moved it or what it was attached to, I ended up with a very odd sensation. I did not appreciate it.

Aside from the drains, I still had a catheter (it was removed the next morning) and the compression devices on my legs. My incision was bandaged (I didn’t see it at all the first day) and I was wrapped up in a big compression bra that held everything together. It was only after I went home and removed this compression device that I realized how much it helped. Boobs are heavy and they pulled at the incision. So did my arms.

One unexpected problem – my back muscles were a mess. I have scoliosis, so the muscles in my back and upper body are often held in a delicate balance of tension that keeps me from great pain. When I’m overweight, my muscles are strained and uncomfortable. Well, apparently ripping open my chest didn’t help. Because of the problem with my back, I felt like I was surrounded in a big circle of pain. I couldn’t get a lot of relief – the medication didn’t help the back pain as much. I don’t think I was able to explain the extent of my pain to the nurses, because they never took it very seriously. Eventually, I managed to secure a heating pad and got a little relief. This extra pain made a couple of hours absolutely unbearable though.

Surprise #2: I found out later that afternoon that I was allowed to get up and walk around. Again, I didn’t expect this. And I didn’t get up either. I felt like I could barely move; I certainly wasn’t trying to get up yet.

I had to keep my upper body elevated – the flatter I got, the more intense the pain was. This caused me to slowly slip down in the bed. Typically, you would just scoot yourself back up and not think twice about it, but I couldn’t quite move that way yet. I wasn’t allowed to use my arms to do anything, so pushing myself up that way wasn’t an option. My abdominal muscles were angry. Very angry. And I wasn’t able to isolate them to help me do anything either. The eventual solution was to have the nurses help pull me back up in bed. This was helpful, but meant that they had to lay me as flat as I could go [ouch, pain] and then quickly pull the sheet back up with me on it [ouch, pain].

I was a mess. I was in pain. I was confused about what was going to happen next and nervous about the recovery period. My chest was still orange from the surgery. Overall, it was a rough day. I didn’t cry, but I did come close to breaking down a few times.

My median sternotomy and thymectomy: Part II – Surgery

The morning of the surgery was pretty standard, I think. I work up early, nervously headed to the hospital, and then went through the usual admission procedures. I was sent to a prep room for a couple of hours where I answered questions and had an iv placed.

I’m a difficult stick, so that was a task. Eventually, the nurse called in the requisite “expert, can stick anyone nurse.” Every office/department/floor has one and I always end up with this nurse – no matter where I am. She was successful after a couple of tries. Sorry nurses! I don’t do it on purpose. When I had to have my CT scan in the emergency room when this all started, it took them ten times to get that baby in.

My husband was with me, of course, and eventually my parents came back and spent time with me. Overall, it was very low-key. The lovely nurses gave me the “don’t panic” medicine and everyone was disappointed that I didn’t do or say anything weird. I was too, truthfully. I was hoping to be delirious by that point, but I just felt calm and relaxed. Then it was time to head to the operating room.

The “don’t panic” medicine made the roll down the hallway uneventful. I was a little weirded out by the old hospital-green tile in the operating area hallway – it made me feel a little like I was heading to some kind of horrible psychological procedure in a vintage asylum. I wanted to make a tasteless joke, but kept that thought to myself. The operating room was standard, sterile, and slightly terrifying.

I was surprised by how uncomfortable it was to be moved from my bed to the operating table – I did not like being picked up on my sheet and slid over. As the staff in the room prepared for the surgery, I was inundated with questions about how the tumor was discovered. I was used to being a medical oddity by then, so the questions didn’t faze me much and I gave my typical short explanation. While we talked, someone put the compression devices on my legs (to fill up with air and release over and over again to help prevent blood clots). I liked it at the time – it felt like a nice massage – ask me how I felt after dealing with them for several days and I would have a different answer though.

Eventually, we got to the point where the anesthesiologist was asking me nonsense questions that I knew he didn’t really want to know the answer to (that guy doesn’t care about my kids), but was just trying to ascertain that I was going down. Then . . . BOOM! I woke up in recovery.

I don’t have a lot of experience with surgery – just a c-section and my wisdom teeth out, if that even counts – so I was surprised by the amount of time I lost. My surgery took 2-3 hours – I have no memory past talking to the anesthesiologist when it was taking me a bit longer to put my thoughts together, but I was still very much lucid.

In the recovery room, I woke up in pain. I didn’t open my eyes much at first and just remember repeating “It hurts. Why does it hurt?” over and over again. I also remember feeling bad as the nurse was trying to comfort me while getting an extra dose of pain medicine ready. In my mind, I knew exactly why it hurt and that she would make it better. I wanted to tell her that, but I just couldn’t stop repeating those words. My husband came back to see me several times and my mother too.

I didn’t see my surgeon, but he told my family that the tumor was much larger than expected and looked benign (although more testing would be done to verify). The surgery had gone exceptionally well and I did not need to go to the ICU. I was told to expect 24-48 hours in the ICU before moving to a room, so that was pretty exciting. When my family told me, I said, “I’m awesome. I rock.” Taking full credit for the success, of course.

I was in recovery for another two hours or so before they moved me to my room on a floor dedicated to patients who had similar surgeries – mostly bypass patients. I was in pain and the hard part was just starting. I’ll talk about that first difficult day next time.

My median sternotomy and thymectomy: Part I – Research

When I first found out I needed surgery, I did what any red-blooded, twenty-first century American does, I googled. And . . . I didn’t really find a whole lot. Sure, there was plenty out there about having a median sternotomy, but almost every site was related to bypass surgery. They were geared to elderly patients and much of the focus was on the recovery of the heart. Some of it was interchangeable, of course, but I wanted to know more details about what to expect from the surgery itself.

I knew that if my tumor was benign, I would walk – well, be wheeled – away from surgery to deal with a different recovery than the heart patients. If my tumor was malignant – well, my post-surgery journey was going to be very unlike the stories I was reading.

I said from the moment I left the hospital I wanted to record the ins-and-outs of my recovery. It has been a year, so I should probably get around to doing that now. I’m going to break it down into a few easy-to-handle parts over the next couple of weeks. I’ll start with the research I did beforehand, move on to the actual surgery day, then the rest of my time in the hospital, and end with my recovery at home.

So first, what I did find when I googled. Aside from the heart-related articles and lots of youtube videos of surgery (no thanks, I still haven’t watched one to this day), I found a couple of very useful sites:

1) Foundation for Thymic Cancer Research ( and their related yahoo support group. This site had stories and resources galore – both on the main site and the support group. It wasn’t really the best resource for me, however. Thymic cancer is rare and often diagnosed very late. The stores from the group were heartbreaking and not the best for a person with a mystery tumor. I gained a lot of knowledge from the site, but it wasn’t a place I needed to keep visiting until I found out if my tumor was benign or malignant.

2) Youtube videos from Thekarinski69 ( An actual person talking about her thymectomy – the only thing like it I found at the time. It was encouraging and comforting to see someone talking about it. Even if my experience didn’t end up anything like hers, it was just great to hear the voice of someone else out there.

3) The NeuroTalk Support Group for Myasthenia Gravis ( Myasthenia Gravis is an autoimmune neuromuscular disease that causes fatigue and muscle weakness and is sometimes linked to having a thymoma or other thymus irregularity (when my thymoma was discovered, I was asked questions and went through tests associated with MG). People with MG will often have a thymectomy in an attempt to relieve symptoms. This particular message board was the absolute best place I found information about younger people without heart issues having a median sternotomy. I poured over the archives and checked it daily for new stories.

I am a historian and archivist – a research-professional by trade. It was important for me to walk into surgery armed with the best information I could find. And I found some good stuff. What I was lacking was a wealth of in-depth stories, practical information guides to what I was about to experience. I hope my next few blog entries can add to that little corner of the internet and help someone googling away like I did.