Monday, April 25, 2016

Weird Happenings

It was the Thursday night after my cerebellum surgery.

It was so clear that I couldn't ignore it. I thought I might have heard something. I only heard it once. I never heard it again.

It was a "ding" sound.

The room was silent... other than the oxygen and IV machines.

My eyes were closed. I could only speak in a whisper. I had to keep "distracting" myself to think of "other" things because my sense of smell was so sensitive... even to those "mild" smells.

That "ding" sound made me open my eyes and look around the room. Did I imagine it? Was I going a little loopy? Was someone playing a joke on me?

I looked around a few more times...

Don't know what happened, but it happened.



Then, there was that other happening... It was like a "little box." The little box of my cerebellum. It was opened during my surgery - literally and figuratively! I had these little thoughts there. When it got filled, the words would spill out. Well, they would spill out during my sleep. I would wake myself from my sleep blurting these things out. They even showed up in my dreams. Sometimes, I would wonder, "How did you know?"

I would think it, the thoughts would go to my brain, and they would, eventually, come out.

That is the only way that I could describe it. It happened for one and a half months, and then it stopped.



There was also the times that I saw large bugs out of the corners of my eyes. Yes, bugs. Later, I realized that they were one and a half inch cockroaches. I saw glimpses. Never saw them directly. I would lift the blankets or whatever was in front of me to make sure they weren't there.  I told my husband about it. I can't imagine what he was thinking about life with me after my surgery!

We never had cockroaches. Spiders and ants - yes, but never cockroaches! I would have left this home a long time ago if they were here! It happened for a few months. Then, it stopped. It  was hard to tell whether they were real or not - at times. But, they weren't!

These are the weird happenings of my life after brain surgery and crazy meds!


Saturday, April 23, 2016

MRI Results and This Navelbine

Friday, I went to see my neurosurgeon about the results of my second MRI. We had to wait a while, because they were pulling up the scans on the computer. Can I pause and tell you how nice the nurses in that office are? They have been consistently nice and so caring! My husband took a few minute nap and was refreshed for the diagnosis. I needed him to hear everything the doctors said, because I forget so easily.

The doctors came in and told us the news. The scans showed that everything was clear. So thankful!!! No new growths. The downside: I'll have to get MRIs every three months, so they can monitor my cerebellum. Was hoping for the next one to be in six months.

I am continuing to go through my Navelbine side effects. I have experienced a sore body, fever, sharp pain in my head, fatigue, jaw pain, ear ache, and it felt like sores were forming in the back of my mouth. Yesterday, I drank a green shake, one ravioli, two bananas, a few spoonfuls of vegetable jjook (congee), and drank two cups of grape juice. My jaw hurt so much that I couldn't chew. Everything felt like rocks, when I chewed. It didn't help that when I chewed, it would pull on my ears and pain would manifest itself.

Don't yell, but I forgot to take Tylenol yesterday. I think that I didn't take it, because it didn't help with the ear ache on Thursday. Will try it today.

For those of you on Navelbine, you are not alone in experiencing ear aches. It is not listed as a side effect, but people are experiencing it. For a while, I was a bit afraid that something was growing in my brain again. Looking it up on the internet helped me to see that people are experiencing this side effect. I wasn't going cray cray!


Friday, April 22, 2016

Navelbine Treatment #1

Wednesday, was ok. The nausea caused by the Navelbine kicked in. I didn't want to take a nausea pill. You know the drill: more meds, more side effects. The nausea was better than the Eribulin/Halaven, but it still made me want to scream at times. You don't want to do that? I sure do.

Thursday was one of those days. I thought that after Wednesday, I was going to be better... Woke up with a bit of a headache, ear ache, body ache, swelling and pain in the back of my throat, and a coming fever. All of this made it difficult to eat. Move your mouth, move your head, ear, and throat. 

I had to watch my fever before taking a fever reducer, so I kept taking my temperature from 10:00 am. The fever kept rising, and I could feel it taking over my body. When I get a fever, you can't tell by touching my face. My breath gets really hot. Thoughts of going to the ER gripped me. I didn't want to go to the hospital, again...

I slept for most of the afternoon. That was the only relief. When I took my temperature after waking up, it was definitely rising. I had to call my oncology nurse. Thankfully, she told me to take a fever reducer and to see if the symptoms got worse. No ER. 

The ear and throat ache eventually got to me. I admit that I shed a few tears because of the pain. I also looked up the symptoms and found that this is common with Navelbine. I kept thinking of having these side effects and the side effects of the Neulasta (white cell boosting) shot next week. Yikes! 

Praying that these side effects will pass quickly!

Friday, I am meeting with my brain neurosurgeon about my MRI results. Please keep praying!