The Whole Story: Part Fifteen - The End of the Chapter



    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 seen multiple doctors who have confirmed my suspicions, and as nice as it is to be told I'm right, it doesn't change the situation. The hope is that eventually my body develops enough scar tissue that it starts accepting the catheter tubing as part of itself.

    In July we finally made it to the beach! Despite previous concerns, we didn't have to make the long trek to the emergency department at all.

    We developed a rhythm, sense of normalcy. My IV nurse came every week to change my dressing and draw labs. The new IV antibiotics I started during my hospital stay at the beginning of June only required a “push” once a day instead of the bag I had to carry around being pumped into me 24/7. My youngest son, who still lives with us, was great about learning how to care for my port and do this push so that my husband could have the freedom to go hiking or serve at the homeless mission. A couple of my other kids even tried it out on occasion.

    Because of the nature of the IV medication, the company was only able to ship us about a week's worth at a time. They weren't always on top of getting it to us in a comfortable time frame either, but they always got it to us when we needed it. Sometimes, though, they had to use couriers that would show up at our house in broken down vehicles and outlandish outfits. One time, the courier accidentally let their dog out of the car before they left. My husband had to grab the dog and chase them down the road to make sure they didn't leave without it. It definitely kept things interesting!

    At the beginning of August, a number of milestones were reached. First, it was time for my final post op from my brain surgeries. I headed into the city to have a full panel of MRIs done followed by an appointment with my surgeon. I'll never forget that meeting. He looked me in the eye and said, “You told me when we first met that you were a complicated case. I should have taken you more seriously.” They took a look at all my incisions and did a full neuro assessment. I checked out great and was given clearance to come back in a year. I still have a small portion of my tumor, so I will need to be checked on once a year to see if it has grown, but apart from that, hopefully this chapter of my life is drawing to a close.

    The next milestone was my appointment the next day with infectious disease. This appointment was virtual so we didn't have to head into the city. They went over my recent labs and everything looked great! So, they gave me clearance to be done with my IV antibiotics.

    Finally, on the third day, I had my last appointment with my in-home IV nurse. That was bittersweet as I had come to very much enjoy her company and looked forward to her visits. Her only task during this appointment was to remove my PICC line. I had been a little nervous about this, but she assured me that there were no nerves inside my veins and I wouldn't feel a thing. She was absolutely right, and it was done before I knew it!

    Things felt pretty strange at this point. After five months of chaos and drama, we were sent on our way and told everything was fine. This was the end of a chapter, but praise God, there's more to my story!

Here's the thing: It felt like 5 months of chaos, but that's just a matter of perspective. The fact is, God had it all in His hands the whole time. He knew the end from the beginning. When I got that call on February 27th telling me that I had a brain tumor, a part of me wanted to be afraid, but a bigger part of me knew I didn't have to be because God had it under control. Never once during this whole season was I out of His hands. Never once did He leave me to the best that modern medicine had to offer. I'm here today to tell you that God is bigger than brain tumors. And I'm not saying that just because I survived. I would believe that even if He had taken me home to be with Him. What I'm saying, is that God never left me alone, He always provided for me, And I am fully assured of His love for me!

Comments

Post a Comment

Popular posts from this blog

The Next Crazy Thing

Image
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
Read more

At least it's not bad news

Image
  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
Read more

When "Wait and See" Wouldn't Sound so Bad

Image
    Ten days after I received the call letting me know that they found something on the MRI I was sitting in the office of a Neurosurgeon.  I have no doubt that God orchestrated the circumstances that had brought me there, including a friend who is also dealing with a brain tumor recommending this clinic. But how could any of this be real? Only a couple of people knew what was going on, but there wasn't much to know before this appointment. All we had were a few key phrases on the MRI Study Result and our dear friend, Dr. Google.  I went into the appointment with the impression that the doctor would either recommend watching and waiting, doing another MRI in six months and seeing if anything changed, or taking it out right away.  In previous encounters where the option was to wait or do something I have vastly preferred doing something, but this time it was different. I had read about the potential complications of surgery and I was scared.  Not to mention, needing to act right awa
Read more