Originally posted on my What Friends Do blog, 10/20/16
I'm going to do my best to recap the past two weeks, but first I want to say that I am home from the hospital today, and Lumpy is gone!!
On October 11, I went into surgery and had the upper lobe of my right lung removed via thoracotomy. For those of you not familiar with lung anatomy, the upper lobe of the right lung is a little under half of the right lung. Here's a pic for reference:
The right lung has three lobes, while the left lung has two (the heart is hanging out somewhere around that left lobe as well).
So, I'm currently down about half a lung. Amazingly, I'm told that the lower part of my lung will eventually grow back up into the space that the top lobe used to occupy, and that in a few years' time it will be hard to tell on x-rays that it isn't my original full long. Wonders never cease, I guess. In the meantime, I'm down part of a lung and predictibly am tiring very easily and am short of breath with much exertion.
The thoracotomy is the incision used to access the lung. It runs from the side of the body, just below the breast, up and around the back. Here's a non-gory pic for reference, including the chest tubes that are put in with this type of surgery:
My incision starts a little more toward the middle of my side, but otherwise this is pretty accurate. I would guess my incision is somewhere around 12 inches long, or maybe a little longer. The chest tubes then go up into the lining of the lung to collect the insane amount of fluid that is produced there. Apparently, the body works hard to fill in any voids, and fluid is what it generally has to work with. These tubes drain the fluid out of the lung area and into a collection box. Once the drainage slows to a certain amount (100ml per 24hours is my surgeon's magic number), the chest tubes can be removed.
So, on October 11, I walked into the hospital mostly feeling pretty healthy, underwent surgery, and had Lumpy removed with the top part of my right lung. It's been hard to wrap my head around walking into the hospital feeling strong and healthy and walking out with significant deficits. I've never purposely gone into a hospital with the intention of making myself feel worse. I know it's for a good cause; that you can't just leave cancer sitting in your lung, but it's still been difficult for me to adjust to the idea.
The surgery went swimmingly. Everything went according to plan, and they finished up even more quickly than we'd anticipated. IU Health is a teaching hospital, and one of the doctors attending the surgery even told me ahead of time that they were excited for my surgery because I'm young and healthy and they anticipated it would go well. (What an awkward conversation..... "We're really excited to get in there and cut your lung out!" "Ummm. Thanks?") While Dr. Kesler (my surgeon) comes across as awkward, he's an excellent surgeon that patients travel from all around the country to see, and I feel incredibly grateful that he was willing and able to do my surgery. He's also very kind and sympathetic, which helped.
The first days following the surgery were a lot more difficult for me than I had anticipated. I thought I would be pretty much sedated the whole first day, and that pain would be adequately controlled. Unfortunately, I was in far more pain than I anticipated, and I was with it enough after surgery to be conscious when they took the intubating tube out of my throat, which was not super fun.
No one told me in advance to expect that the chest tubes would be insanely painful, but I found out pretty quickly. I had an epidural that released a steady stream of pain medication, as well as a PCA (patient controlled analgesia), which is essentially a button that is hooked up to a pump with pain medication that is then hooked up to an IV. The patient can press the button as frequently as they need pain meds, and the pump will dispense it, but only in amounts and time intervals approved by the physician. My first day was essentially a series of me rising to consciousness to press this button, which didn't release nearly enough pain meds nearly often enough to keep the worst of it at bay. I vaguely remember groggily wondering if there hadn't been some mistake, and instead of performing the surgery someone had lit me on fire instead.
Thankfully, after the second day, the worst of the pain was over. There were several mornings where I had a very hard time getting from 4am to about 7am, and as of right now I still have incision pain and muscle pain and anticipate that I'll have that for a pretty long time. I no longer feel like maybe my incision is actually fire, though, so that's a marked improvement. The pain got much better after the first tube was removed, and now both tubes are out, which is wonderful.
One weird thing that I ran into at the hospital was that I had severe hot flashes - they were very intense, and some lasted up to an hour and beyond. I've struggled with these for the past few years (more accurately called "flushing episodes", I'm told), and since they started after Reid's birth I assumed that they were related to hormone changes. I've since learned that carcinoid tumors can secrete hormones that cause flushing, and it's likely that this has been the cause of my flushing episodes over the past few years. However, these were happening a few times a week, mostly under heavy physical exertion (like after a CrossFit WOD), and lasted 10-15 minutes. I thought getting the tumor out would make the flushing episodes stop, but for whatever reason they increased and intensified after surgery. They have tapered off some, and I'm working with the endocronologists at IU Health to try to figure out why they're happening. So far my thyroid labs have come back perfectly, and blood tests that could indicate the presence of another hormone-secreting tumor came back negative (whew!). There is one more test I'm waiting for results from, but it won't be back for at least another week. This is another test that would indicate the presence of another hormone-secreting tumor, so we're hoping hard that it also comes back favorably. If it comes back positive, then we have to do additional scans to locate the site of the tumor and figure out how to get rid of it. Given that the tumor in my lung was fully encased and that all the lymph nodes were clear, it's very unlikely that I would have metastasis, but I'll still feel much better if another test comes back negative.
Speaking of Lumpy, I did get the deets on him. He was 2.4cm long at the longest point (so about an inch, which Dr. Kesler repeatedly referred to as "THAT THING IS *BIG*" while his eyes got the size of saucers, but which I didn't realize was all that big). It was sent for pathology and is definitely, for sure, forever and ever amen, a typical carcinoid tumor. It was fully encased in a border, which further supports the finding of it being typical, and also means it is incredibly unlikely to have spread anywhere else in my body. Typical carciniods metastasize only about 10% of the time, and even less when there's a full border around the tumor. I'm trying to be optimistic about my odds, though we've already defied the odds several times here.
Lumpy is annihilated. He came all the way out, went to pathology, and he is DESTROYED. Do you hear that, cancer? DESTROYED. DO NOT FUCK WITH ME OR I WILL TAKE YOU DOWN.
Anyway. I anticipated being in the hospital for "5-7 days, probably on the shorter side since you're young and healthy". However, I ended up being there for 10 days all told, including today when I was released. Although I was recovering well, getting up to walk around, having steady vitals, and all that good stuff, my chest tubes were draining too much to be taken out. On Monday, they took out the tube furthest toward my back because it wasn't draining much anymore, but the second tube just wouldn't stop draining. Dr. Kesler offered to send me home with the second tube still in, but I wouldn't be able to have it taken out for another week after leaving. Given the way we were struggling to control my pain even with access to intravaneous pain meds, I didn't feel good about essentially committing to a week of chest tube pain that may or may not be controlled by oral pain medications. I was also very nervous about going home to the kids with a chest tube. Reid is still only 3, and is limited in how much he understands and in impulse control. It was easy for me to imagine one of the kids accidentally pulling on the tube, or someone climbing up into bed half awake, pulling on the tube in the process. In the end, I decided to stay until the second tube could come out. It was a very difficult decision for me, and I really struggled with the last few days in the hospital. My endurance for the whole thing was pretty much shot. I was tired, I wanted to see my family, and I just wanted to be home. I am pretty glad that I didn't end up at home with a chest tube for a week, though.
So, I'm home!
I still have to wait a few days to shower. The bandage where my tube came out and where I had a central line can't be removed for 48 hours. I'm devotedly washing my pits with a clean rag, but I'm probably still kind of stinky.
My back looks a little like Frankenstein's monster (bonus: Halloween costume complete). My incision is sore and itchy. Eventually all the steri-strips on the incision will fall off. That's the easy part. The muscles, nerves, and tendons that were cut underneath that incision will be sore for a very long time. I will have to rebuild strength, and work hard at preserving and improving mobility on that side of my body. Right now, sitting upright for long periods of time (say, 2 hours) is painful. Laying flat is nearly impossible without a good deal of discomfort. Bending over isn't happening.
My brain is catching up with the reality of no longer being a normal, healthy adult, but a cancer survivor with significant physical deficits. The physical deficits will get better. Living with lifelong cancer scans and the constantly underlying knowledge that I've had cancer and I can have it again might take longer. Acceptance is hard. Trying not to live in fear is hard. I'll be working on it.
In another month I'll go back and see Dr.Kesler and an endocrinologist at IU. I suspect they'll both tell me I'm doing great and to go on my merry way. Dr. Kesler will probably tell me to have a CT scan done annually for the next 10 years or so.