Salty Zebra

  “So the king gave the order, and Daniel was brought and thrown into a den of lions. The king consoled Daniel by saying, “Yor God whom you continually serve will rescue you!”  Daniel 6:16 Darius, the king, had an anxious night of waiting. He hoped that Daniel would be saved by his God, but he didn’t know for sure. If he did, he would have had peace and rested well. The devotional author equated this to seasons of waiting in our own lives. I’m in a strange one. I have a brain tumor, that I’ve mentioned often before. I had a surgery last year that took out part of it, but was told that it would eventually grow. That began a season of waiting, that I thought had ended this spring when I was told that it had begun growing. We started down the path of treatment, seeking out a team, learning, and figuring out what treatment modality would best suit us. Then, this last Monday, we learned that the tumor had not actually grown at all! According to our new doctor, who uses differen...

  Radical tumor removal is not always possible because of the critical brainstem or diencephalic locations of some tumors. Tumor progression and eventual death are likely in such patients. Stereotactic radiosurgery for pilocytic astrocytomas part 1: outcomes in adult patients Kano et. al.  So my posts are usually preceded by a scripture verse, often an encouraging one. Today I needed to give you an insight into what I've been experiencing. From the time I was diagnosed with a brain tumor, about a year and a half ago, I was reassured that it was a "WHO grade 1 benign" tumor. I, mistakenly, took this to mean that it wasn't a big deal. Even when I was told in June that it had grown "slightly," I thought that meant they'd zap it with radiation and that'd be the end of it. Guess what, I was wrong. When my June MRI revealed growth, I was referred to the Tumor Center for treatment. Fearing a long, drawn-out process, I was relieved when they scheduled all my...

Buckle in! This is a processing post so it is likely to be long and wordy and emotional and probably flawed in many ways. I thank you for your patience and anyone who makes it to the end gets bonus points in my book 😏.  Let's start with the info. I've been having progressively more intense, more frequent, and longer lasting migraines. Since my eye surgery in May, I've also been experiencing a great deal of nausea, almost daily. Sometimes meds help (with either), sometimes they don't. In addition, since the eye surgery, my double vision has intensified. My depth perception is shot, I'm regularly missing things I grab for, mistaking curbs for cracks in the sidewalk, bumping into walls or counters. Those are the three things that neurosurgery told us to watch for with regards to the shunt functioning properly: headaches, nausea, and vision changes. Now the vision changes were probably because of the surgery and the nausea was probably  because of the migraines, but th...

  Therefore, dear friends, since you are waiting for these things, strive to be found at peace, without spot or blemish, when you come into his presence. And regard the patience of our Lord as salvation, just as also our dear brother Paul wrote to you, according to the wisdom given to him,   2 Peter 3: 14-15 Would I say I’m at peace? That’s an interesting question. I deal with a lot of pain, but I’m ok with that. Would I like it to be gone? Absolutely! Does it affect my daily life? Definitely! Just because I’m ok with it doesn't mean that it doesn't affect me. So how can I say I’m ok with it? I feel like I’ve made my peace with it. I’ve learned techniques to tolerate it, breathing through it, stretching, elevating, heat, etc. I recognize that it affects my ability to think and I’ve come to accept that. On high pain days I still play games with my family, but I expect to lose by a large margin. I set aside more time for my Bible study or meal planning than I normally w...

Ok, guys. We’re going to get real today. This is a post I’ve avoided writing. Or maybe I have written it. Oh dear. That’s the issue. It’s about memory. I thought I was getting personal on Monday when I wrote about our marriage, but this is the inside of the inside of the inside of me. This is the stuff I don’t want to talk about with my husband, or my counselor, or even myself. Forget my upcoming surgery, this is the really scary stuff in my life. It started a long time ago, well before my brain surgeries. In fact, this was one of the symptoms that I hoped would be cured by them, but it wasn’t. The most dramatic incident took place just before we found out I had a tumor when we were in Disney World. As you can imagine, it’s a very over stimulating place and I struggled with that a lot. At a couple of points in the trip it hit a tipping point and I “blanked out” as my husband put it. In the middle of a sentence, I froze. I stopped talking, moving, anything. I stayed that way for a ful...

     June brought with it my much anticipated visit to the neuro ophthalmologist I discussed in this post as well as a new side effect to my surgery. I began developing abdominal pain, specifically lower abdominal pain. It was tricky. It wasn't always in the same spot. It didn't always have the same quality or conditions. It actually took a while for me to begin associating several different pains as being related. When I initially brought it to the attention of my neurosurgery team, they said it couldn't have anything to do with the surgery. That just didn't sit right though, and I kept doing my own research online. Anecdotally, it turns out that quite a few people have had abdominal issues with the catheters from VP shunts. You see, this long tube runs from my brain all the way down into my belly, and coils in the base of my pelvis. I have no uterus anymore, so it nestles right up against my bladder. You can imagine that the two are not good friends. I have since see...

(A couple of gifts awaiting me at home. A zebra pillow pet from my husband and flowers from my Grandma)      In hindsight, I would say that I had a “soft discharge” from the hospital at the end of May. On Wednesday, the 24th, I got to go home. That Friday, the 26th, I met my in home IV nurse who came to visit every week to change my dressing and draw labs. She was a bright spot that I looked forward to every week as she was pretty much the only visitor I had apart from my mother. It can be very lonely and isolating healing at home.      The next day, Saturday the 27th, I woke very early in the morning around 1:00 AM with terrible nausea that led to intractable vomiting. When this did not get better by the time my husband woke for the day, we called and the doctor thought it would be best to come in to the ED. This worked out well for a number of reasons, one of which was that I was running very low on green bags. So low, in fact, that I had been rinsing and...

    One part of this journey that became a particular challenge for me was my hair. A significant part of me wondered if my hair, which was so slow to dry and I tended to wear in a ponytail which covered my incision totally, was partly to blame for my infection. After the first brain surgery, I had a thin line of hair shaved where my incision was on the back of my head down to my neck. After the second surgery, this thin line was widened to a landing strip. In addition, I had a few spots on the top of my head near the front that had been either trimmed or shaved so that the EVD could be placed.      The day after my second surgery a sweet nurse helped Michael to “bathe” me with we wipes and wash my hair with a washcloth. I didn’t even know this was possible! She got a basin of water, and they soaked washcloths in it then ran them over my hair to wet it, they applied the soap, and then they repeated the process with the washcloths to rinse it. I felt very loved...

    At the end of my last post I mentioned that most people only stay in the ICU for less than 48 hours. Despite some rather exceptional circumstances with trying to get me to wake up from anesthesia, my first ICU stay would have only been about this long had it not been for overcrowding. That meant the hospital was too full to move me to a regular room and so they had to keep me on the ICU floor and downgrade me to acute care. My second ICU stay turned out to be the exception that made the rule. The output from my EVD showed that a shunt would be necessary, but because of the infection, they were unable to go in for an additional surgery right away. In fact, after my surgery, the infectious disease (ID) department became the ones in charge. This was because once the CSF leak had been patched the infection was now the most immediate danger. Neurosurgery was not allowed to lift a finger without their approval.       Looking back it's easier to piece thi...

It's 6:00 AM in the ICU. I haven't slept more than dozing in and out because the nurse is required to check my vitals and measure the output of my EVD every hour in addition to popping in and out to give meds. I can hear the voices from the hallway as the resident teams begin to make their rounds. My neuro team should be here shortly. I wonder who will be taking point today? Will they have anything new to say? 7:00 AM. My neuro team visited without any new information, but they were very sweet and encouraging. My husband helped me to order some breakfast on my phone. That seems to be the easiest way to do it with the least miscommunication. We've finally gotten it in my chart to have me on the gluten free menu! That makes things easier. It's time for the nursing shift change. This happens in the 7:00 hour AM and PM. My nurse from the last shift will bring in the new nurse, introduce them, teach them about how my EVD pole works, and then leave me in their care. 8:00 AM a...