Where The Heck Have I Been?: A brief synopsis

Hello, again, my friends. I have been absent from blogging and social media for several months. Some of you have noticed. Most have gone on with your busy lives, not even missing the weekly Monday drops. It’s ok. I don’t think my own family even reads these things. As a child of a divorce and re-marry situation, I don’t take kindly to anyone who makes an assumption that I know anything different from the information that they last told me. I hate when a tv show or a book leaves you in one place, then picks you up three miles down the road with no explanations, just inferences made in hopes that we are all bright enough to connect the dots. However, the inferences are generally sub-standard. With this in mind, I’m offering a short blog to catch you up, so we may begin volume two.

Starting back in late September, I had decided to start writing another book. I promised I would pop in with semi-reliable blogs, but really wanting to focus on the book. I did follow through on a few blogs, and then everything went silent. Even my real life friends and family were perplexed. It wasn’t just silence in blog-landia. It was silence on all fronts. I had some people send simple one line texts, “Are you mad at me?” To which I would reply, “No”. I wasn’t mad. That was the absolute truth. The whole story goes like this…

In early October, I had a migraine. It was no big deal, I usually get one or two a year. What made it a big deal was getting another one 4 days later. Then another 5 days after that. Then another. And another. And more. I stopped counting after 10. Instead of getting help or admitting defeat, I kept going to work, and hiding my symptoms. Then I started shitting blood. It wasn’t just black turds like we all see from time to time. It was straight up, bright red, “Did someone just get murdered” red. And it wasn’t a little. I called my PA (because the doctor of the practice never sees me anymore), and scheduled an appointment with her. Reason given: Migraines. As any of you who are American know, it takes a week or so to get worked in if you are a current patient. I waited about a week, had another migraine, then went to meet with her.

My PA has been pretty good to me. If she’s in over her head, she refers me to a specialist instead of trying to deal with it. While checking in, the medical assistant asked me really silly questions, like “Does it hurt to move your head?” Or “Is it like a dull pain or a stabbing pain?” Or “Does it hurt to go from sitting to standing?” I am just really happy for anyone who has never had a migraine, and those of us who have them know who you are. Anyway, in talking to my PA finally, I expressed that I wanted an MRI or a CT scan to make sure there was nothing up there, then I would seek out help from acupuncture. She kind of rolled her eyes, but agreed that it’s better to put my fears at bay and check things out. I mentioned the blood, and she paused, thought about it, and told me to keep an eye on that and call if it happened again. She and I both agreed that we expected to find nothing on the MRI, but it was good to check things out, just to make sure since the migraines were way out of character.

A few days after the MRI, Shanna (my PA), called me and had a strange tone in her voice. “So, I have your MRI results. Looks like there is something there after all.” The Radiologist couldn’t tell if it was a tumor, or a cavernous malformation, either way, this was far outside of her pay grade. I don’t know if you’ve ever gotten news like this. Chances are, you have. For me, I felt a very clear moment. I had a choice. I could cry and be scared and start calling everyone I know, or I could be calm and fearless. One of my dearest friends (who I KNOW is reading this) had a brain tumor removed many years ago, and I thought of the grace that she had while in the midst of that situation. I chose to be like her.

I got in with what turned out to be an amazing Neurologist about 10 days later. We spent an hour and a half looking at every scan, making notes, asking questions, and hearing him say over and over, “…but WHAT is THAT?” It was decided that the migraines, which are not being caused by Alf (my name for the new part of my brain) needed to be assessed by a Neurosurgeon. Alf resides on my Cerebellum, and it right in the path of where all of my spinal fluids enter and exit the building. It’s really not the best or easiest place to get to, so a second opinion was welcomed.

The Neurosurgeon’s wait list was 3 weeks, and that was only because there was a cancellation. Otherwise, it was three months. During this time, Wave and I had some very frank end of life discussions. It’s pretty sobering to talk about what needs to happen if we do have the surgery and there is an oops that renders me in a vegetative state, or if I was to die before Lily graduates, or how I want certain possessions to be split amongst our family, or telling Wave that it’s ok to live even if I don’t. It’s ok to love other people. Hoping that my sisters will take on the role of mother to my 17 year old child. In this time, I shit bright red again, twice, and was referred to an Gastroenterologist. 2 weeks wait on that appointment, but still before the Neurosurgeon.

The Gastroenterologist was interesting. They stressed when making the appointment that I must arrive at least 30 minutes early. I ended up 45 minutes early, and the receptionist was a bit snarky about me being early. I brushed it off, as it was clear that she was eating her lunch at her desk, and sat in a completely empty waiting room. Shortly after, another medical assistant arrived, and I was treated to listening about her lunch date, their office holiday luncheon, and burritos. I tried to read the book I brought with me, but I just couldn’t concentrate. I sat and listened until the medical assistant called me back.

The doctor came in, talked with me for about 5 minutes. He noted that I have IBS, and asked about it. He also asked what exactly it is in my brain. I told him that I wish I knew. Interestingly enough, 1 in 5000 people will get a brain tumor in their life. Of those, only about 1/3 are cancerous. Most brain tumors are secondary to another illness in the body. There is a pretty solid link between brain tumors and colon cancer. So that was something that I was constantly thinking about. Unsurprisingly to me, he ordered a colonoscopy to take a look at the situation for himself. I also want to note that my insurance plan year renewed on December 1st, so now, all expenses are out of pocket until the deductible is met.

Anyway, we see the Neurosurgeon, who is a very bright and highly recommended professional. He was immune to my jokes. I did the same tests (very similar to sobriety tests) and answered the same questions. Then we looked at my brain again. The surgeon also found that at one time, this area hemorrhaged. There is also a misplaced vein in the area, which in the past, would have been cause for an immediate surgery. Thankfully, this is no longer true. His professional assessment is that this is a cavernous malformation. He would be willing to remove it if I wanted to be aggressive. You all know me. I’m a wait and see kind of gal. Also, if it were to be removed, it would be a pretty heady (pun intended) surgery, with a very difficult and long recovery. We decided on a schedule of brain scans with immediate changes if the pattern of migraines worsen or if I start to lose dexterity or balance. If it grows in size or bleeds again, it will need to be evicted.

Hurray! But this doesn’t solve the blood shitting or migraines.

The colonoscopy is scheduled for the next week. It was easy. People cry about the prep. It’s really not a big deal. You shit your brains out, but you get a clean slate. The procedure goes off without a hitch, except the anesthesiologist makes a creepy joke about his wife at home pounding breasts for dinner…chicken breasts of course. Also, that he is just like Sting, and will be watching every move I make and every breath I take. I get the dude’s intentions, but no. This is NOT ok. I don’t need to be put at ease. It’s not like this is brain surgery for crap’s sake. Stop being a creepy dude and just be quiet if that’s not possible.

So it turns out, I have Colitis. And the cavernous malformation on my brain is also referred to as a lesion. We are dubbing this ‘The Col-esion”. Like “Collusion”. Get it? HAHA. Still no migraine answers though.

I think you are all up to date now. I will be sending out another blog in the next day or so, documenting the treatment plan for the colitis, not because any of you want to know, but I believe that a lot of what I am experiencing is highly relatable. You can judge for yourself. I also want to point out that I have no idea what colitis is. But we will get into that as part of the relatable aspect.

The next time you see your doctor, and you know that something is wrong, don’t let them roll their eyes at you. You know why? You know your body best, and also…

YOU’RE PROBABLY NOT CRAZY!!!

Author: healthierversionofchris

Hello! My name is Chris and I am many things. Most of my adult life has been spent as a medical science project, with doctors basically telling me I am crazy. Well, guess what? I'M NOT! and chances are, neither are you! I am sharing my experiences with you, in hopes that someone out there may find some common ground with me. If you are just starting out trying to figure out what the deal is, let me help you figure out where to begin. We're all in this together!!

2 thoughts on “Where The Heck Have I Been?: A brief synopsis”

  1. Thank you for sharing. I’m in the UK, I had never really heard of it before I was diagnosed. Most healthcare professionals dismissed me last year when I knew something was wrong and still do now. It’s nice to know an ocean apart we are not alone.

    Like

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