I have now been home from the hospital for an entire month! We've made a lot of progress in that month and also gotten my follow-up doctor appointments in, so there's a bit to update on. TL;DR at bottom of blog post.
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First, for the follow-up doctor appointments. Last Wednesday I went to see Dr. Kesler, the surgeon who removed my tumor. He didn't have a lot to say other than I look pretty good and I can do the rest of my follow-up scans with my pulmonologist. Dr.Kesler is a nice guy, but I'm pretty excited about never seeing him ever again. I am also cleared to drive again and to start working out again. I'm supposed to take it slow and easy for the first 2-3 months, but it will be good to start back at the gym again. Sophia at CrossFit Fort Wayne will be working with me to start getting me back on track, movement-wise. I'm really excited about that.
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Friday I went to see Dr. Khare, who is an endocrinologist at IU Health. She was called to see me during my hospital stay because of the intense flushing episodes that I was experiencing (which have since stopped completely). She ran two different tests to look for additional tumors; a chromogranin-A blood test, and a 5-HIAA 24-hour urine test. Both tests came back well within the range of normal, which is a great sign. Chromogranin-A tests have 95% specificity, which means that 95% of the time, if they come back normal, there is no tumor. Dr.Khare says that the 5-HIAA test is even more accurate, though I wasn't able to find accuracy rates for it online. The combination of both of these tests being normal is very good news, and means it's incredibly unlikely that I have any additional tumors. My biggest concern was potential metastasis, which often go to the liver with this type of cancer. Liver metastasis nearly always show up in these two tests, because once there are tumors in the liver, the liver can't process the hormones they emit anymore, and they go into the urine and the bloodstream. So these tests were particularly helpful for me in ruling out the biggest concern I had left.
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Do you hear that, guys? I'm cancer-free. Thank you, Science.
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Becuase there's not really much that an oncologist can or will do for me right now, and my pulmonologist will be ordering my follow-up scans for the next several years, we're not planning to follow up with the oncologist again unless I have additional issues.
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So that's all the good medical-type follow-up news. It all looks very good from that standpoint, and I am feeling incredibly lucky for how this whole thing turned out. I really think we will be able to just pick up and go about our lives without much more than yearly CT scans. Hallelujah!
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The rest of my update is pretty much where I am recovery-wise.
Right now I'm doing much better than we had anticipated going into the surgery. We were told to expect some truly grim things, like me not being able to wear shirts that weren't button-up or sleep in a bed for several months. Thankfully, none of those really grim things came to pass. I bought 3 button up shirts pre-surgery, and I've worn one of them three times. That's it. I did sleep in a recliner for a few nights after coming home, and in the following week got up from bed and transfered to the recliner a few times during the night. A week or so ago we moved the recliner out of the bedroom, and I'm sleeping in bed lying down just fine.
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I'm now back to being able to do most of my normal daily things, but in small increments. There are still some things that give me trouble - particularly things that require a back and forth arm motion with my right arm, like vaccuuming or raking. I'm not doing those things right now because they hurt. Bending over is difficult for me to do without pain. I'm starting to be able to bend a bit more, but I still have to be careful about it and not bend over too much, or my back near the top of the incision starts to really bother me.
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Sitting upright is more difficult that I had anticipated. As long as I can lean back a little bit into something, I'm ok. So, for example, the sofa has enough give to be comfortable. Sitting at the dining room table is much harder. I can sit upright like that for awhile, but most nights by dinner time I'm hurting, and sitting at the table for dinner is unpleasant. I can stand and walk for an hour or two at a time before needing to sit again.
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I still need more rest than I usually do, so I'm napping during the day or going to bed at the same time as the kids some nights. If I disappear and just don't respond to you for entire evenings at a time, that's why.
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So, I'm up and around, but I'm slow and limited. Can I go to the grocery? Yes. Can I hit all three stores I usually go to and knock them out in a long afternoon? Nope. So I'm getting by, I'm just needing to take life much slower than I'm used to. Sometimes that's really frustrating, but overall we're doing alright. The biggest challenge I have right now is that I'm slow, slow, slow, but my kids are still fast, fast, fast. They're young and still need a lot from me, and because they're young, our house also needs a lot from me in terms of trying to keep up on food, dishes, cleaning, etc. We've gotten a lot of help from the community, and we broke down and hired a cleaning service for right now as well. That has all made a really big difference in terms of being able to manage everything. Moving forward we'll be trying to transition some into me doing more and needing less help. Sometimes it's hard to find the balance, and already we're going back and forth between feeling like I did too much, or feeling like I got help I didn't need right at that moment and tring not to feel guilty about it. I'm giving myself some grace in recognizing that it's not easy to balance out, and that healing isn't linear, so there are just going to be days like each of those.
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Over the next few weeks, we'll be phasing out the events on this page, little by little, as we try to find that balance between what I can handle and where I'm limited. I can't thank all of you enough for checking back up on the calender, checking in on me, and helping to make this recovery as smooth as possible for me and my family. It has been truly incredible. Seriously. You guys are the absolute best. Never in my wildest dreams did I imagine people would come together as this enormous safety net for me in this way. I can't express my gratitude enough.
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TL;DR:
*Follow-up appointments - I don't have cancer anymore! I can drive again!
*Other stuff: I can do a lot of stuff, but I am slow and need lots of rest
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