A Slice of Me - (My Thymectomy and Recovery) Part 1

Be strong and take heart, all you who hope in the LORD.--Psalm 31:24

I underwent major surgery last April to have my thymus gland removed. My thymus was enlarged because of a tumor, in which case it is called a thymoma, and it needed to be taken out as soon as possible in order to prevent its spread to other parts of my body. It was also most likely contributing to my illness, myasthenia gravis, although the reasons why it does is still not quite understood by the medical community.

Months before the surgery, my surgeon, a mild-mannered friendly guy around my age, briefed me on the procedure. He told me that because of the size of the tumor, the only way to safely remove it would be through a sternotomy, that is, to split part of or maybe my entire breast bone down straight in the middle and yank it open, extract and cut the thymoma, reconnect my breast bone back together with sternal plates (little connector thingies that look like IKEA fasteners) in the case of a partial sternotomy or reconnect it with sternal wires if the entire breastbone needed to be cut (gulp). He said with a chuckle that I don't really want to know what that surgical procedure would look like, so don't google or search for it on YouTube (big, huge gulp). He promised me though that he would try his best to get the entire thymoma out with just a partial sternotomy, but he cannot guarantee it until he sees the actual extent of the thymoma, so the more invasive full sternotomy is still a possibilty. Recovery is from six to eight weeks for a partial sternotomy and up to twelve weeks for a full one, during which time I should refrain from lifting anything heavier than five pounds. I felt a pang of sadness at the thought of not being able to carry my two-year-old for a while.

He did add, however, that the pain is actually not as bad as I might think, because the middle of our chest does not have as many nerves as say the sides of our trunk. The pain, he assured me, would be comparable to a caesarian section. Oh well, I thought haughtily, I went through two of those and while I would never wish that pain on anybody, I was able to get through two c-sections just fine and have two healthy boys to prove it. I was beaming with confidence. And then he stated that there were the usual risks of surgery, of course, like internal bleeding and infection, and because the thymus sits on top of my heart, a very vascular area, my heart or arteries or the phrenic nerve (a large nerve that controls my diaphragm) could get nicked by accident. Last but not least, given my recent crisis involving respiratory distress, there is a chance of a prolonged hospital stay if I needed to be hooked up to a ventilator. My confidence then just quickly turned into mush. He did end the explanation matter-of-factly by saying the risks of mistakes are very minimal, and since I had recovered well from my recent MG crisis and I am otherwise healthy, that I will do just fine.

I left his office in a brain-fog. As soon as I got home, I once again did what any sane woman would do who is scared out of her wits due of an upcoming, unavoidable major surgery--I turned to Google. Knowledge is power after all, and at this point I felt incredibly powerless. Stopping short of watching those dreaded surgical videos on YouTube like my surgeon warned me about, I looked for any information I could find on thymectomy surgery and recovery, and I particularly sifted through the discussions posted on MG online support groups where members shared their personal experiences.

There was not a lot of information available. I think this is because MG and thymectomies are so rare. Of the few personal experiences that I did read, there were not too many clear details on what to do to prepare for the surgery and what to expect after the surgery, how much pain is expected, and how well and how long the patients completely recovered. I made a mental note to try and document my own experience and share it with those on the same journey, including tips before and after surgery and a week-by-week account of my recovery (see Part 2).

I remember many things about the days surrounding the surgery. I remember being calm the night before--I was actually able to sleep well. I have also been praying to God a lot for the surgery to go well and somehow God was filling me with a sense of peace that everything will be alright. At the pre-operating room the next day, I remember telling the surgeon I was scared silly but he just smiled, patted me on the arm and said there is nothing to be afraid of. I remember meeting the assistant anesthesiologist, who was totally McDreamy-handsome and that I shamelessly told him he was cute, in front of my dear husband, no less, while the nurse poked my hand for an IV. I remember meeting the head anesthesiologist, who I was told was the outgoing president of the Society of Regional Anesthesiologists in the Pacific Northwest, and I thought with awe, gee, I should ask for an autograph. I remember being wheeled into the operating room, which was refrigerator-freezing, and scooting onto the hard operating table. I was shivering from the cold a little from fear, then the anesthesia kicked in. I immediately felt sleepy. I remember the nurses telling me "sweet dreams," me saying a little prayer "Lord I am all yours." And then I was out. 

I woke up after what seemed like a fifteen-minute nap, even though the surgery took two and a half hours,  and I found myself already in the recovery room. I realized with huge relief that I was breathing on my own. I did not need to be connected to the ventilator! My husband was by my side, a little tired but profoundly relieved as well. He said the surgeon was able to cut the entire tumor out and that he only did a partial sternotomy. God bless his heart. My incision measured only two and a half inches long and It did not even have any stitches. Amazingly, it was super-glued instead. I was sore and groggy and very grateful to God.

I was still very sleepy so I have to say I slept well that night in the hospital in spite of the pain. The next morning, the assistant surgeon came to see me and inspect my chest tube, which is a small plastic tube that snaked around my ribs under my skin, protruded out from under my collarbone and was connected to a suction machine. It drained the excess blood and other fluids from my chest. It hurt like heck. Every time I took a deep breath, I would feel a giant spasm at the bottom of my left rib and the shooting pain would knock my breath away. I expected it to stay inside my chest for another night. But unbelievably, the doctor said she can remove the tube right then and there and I could go home if I wanted to. Go home! After an overnight stay? Without hesitation, I chose to go home that day, back to my family. My parents had flown in from halfway around the world to help watch the kids. My mother-in-law also took time out from work to help out for a few days so my husband could take a break. It was good to heal in the comfort of my own bed, with home-cooked meals and my loved ones nearby.

It has been exactly twelve weeks to this day since I went under the knife. The surgery was successful and I was able to recover really well. What I haven't mentioned yet--and is the actual point of this blog post--is that in the days leading up to the surgery, like anyone about to undergo a major medical procedure that may result in death or severe incapacitation, I spent many hours lost in anxious thought. I was trying to hone in to what it was that was really bothering me--was it the thought of dying on the operating table? 

Upon deeper reflection and a whole lot of prayer, I was sure that it was not dying itself that frightened me, especially death from surgery. What better way to go than being asleep, peacefully sedated with anesthesia? Even dying from MG is probably not as bad either. I would probably pass out first from the lack of oxygen due to respiratory failure before I finally suffocate and die. Not too shabby. What distressed me, like any parent in the same situation, was the thought of leaving my spouse and young children right when they need me the most. How will they eat? My husband still gets my grocery list wrong after eighteen years of marriage. How will they find things they need? My older son cannot find his way in the pantry or fridge or locate his own belongings to save his life. Everyday it's "Mom, where are my flipflops? Mom where is the big ipad? Mom, where are the hash browns? Mom...mom...mom...?"  This made me realize what I needed to do, I needed to start a conversation with my family about what should happen if I were to die. And they needed to start getting lessons on how to survive without mom.

It was not an easy conversation by any means. When I was growing up, death or dying is not something people talk about at home, the same way nobody wants to talk about money problems or marriage troubles. It was considered taboo and did not earn a place at family talks over dinner. It is the same way with my close friends even now. Either you bring it up as a joke or as a hypothetical question, never an actual possibility. When I had my first MG crisis, I wrote my friends that I wanted to thank them for their friendship because I came so close to dying and I didn't want to miss another opportunity to say so. Some of my friends were a bit shocked. "Why are you saying these things?!", like I might as well be talking about shaving my head and joining the Neo Nazis. If I said something like, "But really, I am not afraid of dying because I know I will finally meet God and my departed grandparents, I just want to say that I have been very blessed to be your friend....", I am given the usual replies, "enough, you will live to be a hundred years" or "you'll live long enough to have great grand kids, so hush." It is as if the very mention of dying will hasten its arrival, or worse, that I had completely given up on my health and my life and I am ready to go. Goodbye, cruel world. So I am usually left frustrated and unable to really say what I want. 

So I very gently brought up the topic with my husband weeks before my surgery. To his credit, my husband took it rather well and engaged me in the conversation. We are both practical people after all. We talked about many things--how we'd like to raise the boys, how I'd want him to talk to them about me and how I'd want to be remembered, whether they should move or stay put here at our home for a while (because of memories, etc), how and where I'd like to be buried, and that I really wouldn't mind if he eventually remarried, or at least hire a maid--which made him  laugh--and I promised not to haunt him during my birthday or wedding anniversary, but just watch over them, and keep them out of trouble. Then he said, with a wink, that if he did remarry that I probably shouldn't watch over him and his new wife too closely --which made me laugh. And we took turns talking. He also told me what he'd want me to do if he kicked the bucket first, since nobody really knows when the time comes to say bye bye to earth. The dreaded conversation surprisingly became an intimate, loving and pleasant one, and I am glad we did it. And that is why in the days leading to my surgery, I became less and less worried, and the night before my surgery, I had no trouble falling asleep.

The conversation about dying need not be a difficult one. When done with great love and sensitivity, after prayerful reflection, it could be a rewarding experience with your family and friends. Whether it is you or a sister or husband who is ill, or an aging parent or grandparent, or a friend who just wants to share thoughts and feelings about dying, these conversations are an avenue for making last wishes known, for opportunities for saying thank you for being a part of each others' lives, and a reassurance that the person will be remembered the way he or she wants to long after they leave their earthly life. It can even be a little celebration of sorts, a day of shared happy memories and even laughter, and greatly help ease the person's worries about leaving their family and their earthly life behind. It can also help ease the heartache and be a source of great comfort and peace long after the person has gone.

Whether you are sick like me or if you are as healthy as a horse, and a parent of children young or old, if you have an aging parent, or sister or a best friend facing major surgery, please do them or yourself a favor and start the conversation while you can.  It is a conversation that belongs in the comfort and privacy of the home, between close family and friends, at a time when everyone is calm, collected and comfortable. It does not belong in the ICU or operating room or in the ER when it might likely be too late, with a whole world of things left unsaid. Please do not wait until then.

In memory of Ivy Sayson, my older son's former nanny, who would have gone through a similar type of surgery for her heart condition, but she joined our Lord in heaven in December 2014. May you rest in peace, Ate Ivy.