Another Twist in the Road

Those who know me well know that I have always had a love of reading. Throughout my life, as I’m sure many of you can relate, I have had periods of time where I read a lot more than I do at other times. However, even when I’m not reading a new novel or re-reading a favorite series, I enjoy reading things online whether it’s multiple blog posts about the same topic, simply researching something I’m interested in, or keeping up with current local and world happenings. For the longest time I wasn’t particularly interested in audiobooks because I simply didn’t think hearing it was as good as reading it. Now that I have a child, I’ve become quite the fan of audiobooks because I still get to enjoy reading while accomplishing other tasks. It seems that no matter what genre I’m reading or listening to has one thing in common – they all have their version of a twist somewhere in the story line. Arguably the mystery/thriller/suspense novels have the most obvious twists around, but I would say that even the most lighthearted of books has some sort of a twist in it albeit a softer kind of twist. Authors have to catch and keep our interest somehow, right?

Without further ado that brings me to the most recent update I have for you – you should all be excited since it’s the first update you’re getting in as “real-time” as you’ll probably ever get again 😉 Siblings, parents, and grandparents have been personally updated so this is for everyone else I know that has been following along and checking in with me from time to time. In all seriousness though, I just had my appointment with Dr S today at 3:30pm and I’m sure you’ve all guessed it already but yet another twist has been thrown into my journey. First a couple quick lighter notes – again because my doctor practices at a teaching hospital – even when having a virtual appointment you meet with a nurse first, then a “newer medical student” if they are around, then whatever resident is there with Dr S that day, and then they all come into the room together after Dr S talks with all of them quickly first. Today there wasn’t a medical student around right then, so it was just one of her main nurses and one of her residents. One of the first things her nurse said after confirming that I am myself was, “Oh, you’re THAT patient. We all probably know your name here by now because we have been talking about you A LOT.”. That made both Cliff and I chuckle a bit which is never a bad thing when having a doctor’s appointment. The other chuckle we got was that the resident knocked on the door before entering the room even though we weren’t there in person. She was laughing at herself knocking as she came in and said she always feels pretty dumb doing that for virtual appointments but that she’s not high enough up there yet to ignore that particular policy.

Now to get on to the stuff that I’m sure you’re really here for. For the last 2 weeks or so I have had a feeling that there was going to be something more going on this time and that feeling was confirmed pretty early on in the appointment by Dr S. In a nutshell the first thing she said was something along the lines of how this appointment would likely be a bit of a letdown and that she wished she had better news for us. Then she quickly followed that up with confirmation that she has been doing what she said she would be doing between today and my last appointment back at the beginning of April – consulting with any doctor she could personally think of along with almost every doctor that those doctors in turn have recommended reaching out to as well. She used the word “a lot” every time that consulting with other doctors came up and at least a couple of those times the nurse and resident were in the background with slight grins on their faces nodding their heads emphatically. So, from the sound of things Dr S has been keeping her team plenty busy on my behalf. She said she had reached out to 10 more doctors this past week and let us know that she is presenting my case in a Treatment Planning Conference where there will be 40-50 other doctors present this coming Tuesday. After hearing all of that I’m that much more confident that I am in the absolute best of hands for this bumpy ride that I’m on.

My cyst has continued to grow though the rate of growth has slowed down some which you would think is a good thing right? It still could be a good thing, but I do have a new growth of solid tissue that has formed of which it appears to be coming from the lining of my cyst. So, the slower rate of growth my cyst is experiencing right now could just be because of more energy and cells being diverted to the new growth at this moment. The new growth is about the size of an orange and is near my belly button – so on the front side of my cyst. My cyst is currently approximately two-thirds of the size it was when they removed all that they dared to. It turns out that I had gotten 10% of it being left inside the first go around when it was actually less than 5% which I have been told makes it that much more baffling that my cyst grew so much within those first couple of months after surgery. Dr S said that not only is a growth on top of a growth fairly uncommon but adding that to the fact that the new growth is so different in nature to the original growth made my case go from being unique to being extra unique which unfortunately means we still have no solid answers of any sort at this time. She also mentioned noticing a small cyst on my left ovary in the recent scan which she very quickly said could be perfectly normal and simply part of the wonderful cycle us females have. However, since my cyst was originally believed to have been an ovarian cyst and there haven’t been any small cysts on my ovaries in previous scans she said she would be reaching out to Dr Hunn (the one who had been fully prepared to remove my mass back at the beginning of January when she discovered it wasn’t connected to my ovaries at all) again to have her look at my last two scans to see what she thinks. It sounded like Dr S has an inkling that it still probably isn’t directly connected to my ovaries but wants to more solidly rule that out before getting to much further into the scheme of things.

For now, I don’t even have a concrete next step – no next appointment scheduled, a request for another CT scan or any other scans, etc. Dr S said she would kick herself after consulting with as many other doctors as she already had if she were to give me a next step or even a couple of possible next steps before presenting my case in the conference this next week when there will be so many doctors at that conference. So, after presenting my case there, consulting with Dr Hunn, and hearing back from a few other specific doctors she reached out to in the past week she will call me and said she hopes to have a next step in mind. She hopes to get back to me this next week sometime between Wednesday and Thursday but worst-case scenario it won’t be until a day or two after the state holiday that we have on the 24th depending on how many of those few key doctors she is able to speak with before then.

Another open surgery (non-laparoscopic) is still very much inevitable and still very much a matter of when. However, she is not against trying other things before surgery if anything some of these other doctors say or suggest gives her that light-bulb moment. At this point with how many twists keep coming I wouldn’t be against that either since we are so confident in Dr S. That being said, Cliff and I are still both pulling for my next surgery to happen this year sometime since we hit our maximum out of pocket in January. Might as well take some advantage of that right? As far as the update goes, “Th-th-that’s all folks!”.

Cliff and I still feel pretty good about things overall. Having another kink thrown into the mix wasn’t exactly what we’d been hoping for but at the same time having the feeling I’d been having for the past couple of weeks confirmed was nice. Hopefully I’ll remember that in the future and be able to go more with the flow of any future thoughts/feelings like that should I have any again. I have no doubt that those feelings were God giving me a little heads up that there was more going on. Perhaps so I wasn’t completely blindsided by it today. While the anxiousness that came with it wasn’t as nice, I would rather feel a bit more anxious for a couple of weeks versus being 100% su

rprised right in the moment. God has definitely sent a lot of tender mercies such as that my way through all of this and I know He will continue to send more. I’m also positive that me being able to notice and ponder on the small and tender mercies so quickly is a result of the many prayers that have been offered on my behalf so thank you all for keeping me in your thoughts. I truly, truly appreciate all of those prayers and all of you who have reached out to me in any way. You are all helping me more than you’ll probably ever realize. Until next time I hope you all continue to have a wonderful summer and soak up the extra time with family and friends. After all, time spent with people we love is one of the biggest blessings of all.