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!

Monday, April 18, 2016

Say What?

For those of you who know me well, this has been one of those weeks! It has been squished with A LOT of things to pray for.

One of those things happened on Wednesday. I finally made an appointment with the optometrist for my blurry vision that has been getting worse. If there was anything wrong, she could refer me to an ophthalmologist. I had a series of tests, met with the optometrist, had my eyes dilated, and met with the optometrist again. She told me that I had something that people who are a lot older usually get: cataracts.

Basically, the lens in your eye gets cloudy and they have to replace it. They replace it with a silicon one. She told me that for younger people (I'm in that category!), they usually slide in a prescription lens so that you don't need glasses anymore. You can either get it completely clear and wear reading glasses OR you can get a prescription a little bit lower, see near and far, but wear driving glasses. The thought of not wearing glasses sounded really good to me! But one thing was on my mind: will I see them operating on me?

My husband has had eye surgery and he reassured me that they conk you out. Relief! I will have to talk to my oncologist about the diagnosis when I go in for chemo.

Eye surgery... Yes.

No glasses... Maybe?

Saturday, April 16, 2016

How's Your Health?

My life is filled with doctor visits. I can't keep track sometimes. If I don't write it down, I will definitely forget it. Sometimes, I forget as I am about to write it down.

The last visit to the oncologist, I saw another doctor because my oncologist was out of town. My CT was a week after seeing the other doctor. When Dr. K returned, she saw the results and asked me to come in to the office. It freaked me out. She never called me in like this. I was praying big time.

These past few months, the tumor markers in my blood have been steadily going down. Dr. K and my nurse had been so pleased. My husband made a comment to me that I shouldn't rely too much on those numbers. Of course, I got upset at him for saying that. But, he was right. My latest CT scan showed that the spots in my liver and bones had gotten a bit bigger.

Dr. K asked me to come in because she wanted to share this news in person. She also wanted to tell me the new strategy for my cancer. I'm changing chemo meds again. Any time the cancer spreads, they have to change the meds. Ugh! New medication, new side effects. But then, Dr. K threw me a curve ball! She was going to try and see if she could get me treated (chemo) in her office!

You see, my insurance would not allow me to get treated there. That is why I went to another treatment center. It was fine with me because I, also, really like the nurses at the other facility. They know me, and I know them. They are so nice and caring to me! No complaints here. But, I am also so blessed by my oncology doctor and nurse!

Well, I found out on Thursday that I can get treated in my doctor's office! This is a miracle. I am so thankful for this opportunity! Dr. K and my nurse can monitor me more closely. Who would have thought!

So... next Tuesday, I will start my first chemo treatment of Navelbine at my oncologist's office. Please pray.

Oh yeah, I have my second brain MRI on Monday at 7:00 AM. This is to make sure that nothing is growing back in my cerebellum. Please pray that all will go well.

Friday, April 15, 2016

You Lost Your Song

These past 7-8 months since my brain surgery have been quite the challenge. I thought that I could handle all that would follow my surgery, but I realized, quickly, that it was completely different from all other surgeries: 3 c-sections, mastectomy, thyroidectomy, oophorectomy, port implant...

There were no words to describe what my mind and body were going through. It took months before I could describe the mental aspect as "living in a cloud." I was surrounded and nothing was clear. I just wanted to be at home and to be in warm weather. I couldn't think. I would forget everything in my short term memory. I would scream sometimes. I would have difficulty recalling words. I would have difficulty talking. I would be melancholy. And I would just want to cry - never knowing why I was crying. At times, I thought that I was going crazy.

I knew that the meds were doing this to me, but which one??? I'm on so many meds that it is difficult to pinpoint the culprit. I would seek reassurance from my husband that this wasn't "me." I didn't want to talk to my oncologist about this, because I knew that the answer would be another drug with more side effects. Side effects that I always seem to take in. Ask all of my nurses.

Then, one day, the words quietly came, "You lost your song." I had. I had been living day to day. It felt like all I did was eat and sleep. I didn't have much strength for much else.

I needed to get back up, but how?

This was the struggle I was faced with. How do you "get back up" when it is caused by medication(s)? How do you get back up when you don't know the cause? How do you stop the physical crying?

Physical. That is when I met someone who suggested that I ask my oncologist to get off of the steroid cocktail that I took before each chemo treatment. I asked, and it was reduced from 5 to 3 pills. These meds are so powerful that you have to get off of them slowly. My goal was to get off the steroids completely. My chemo nurse told me that she saw patients on my chemo who did not have to take any other meds to help them through the treatment (If you remember, I had great difficulty when I first started the Eribulin/Halaven). My appetite and mood were affected soon after. My thyroid levels were also off because of the steroids. That was adjusted and I will see my endocrinologist at the end of this month.

Emotional. A random person also left a comment on my blog saying that what I had written about a cancer drug that I had taken had helped him/her. It encouraged me to know that what I wrote had encouraged someone else. You can't time stuff like this. I know that God knew that I needed those words.

Spiritual. But the one thing that has truly kept my head above the water has been His Word, the Bible. This past January, I decided to listen through the Bible instead of reading through it. My eyes have been blurry since my surgery. I only started driving short distances a few weeks ago. Writing is harder because I have to take frequent breaks to rest my eyes. I strain and squint a lot.

His Word has been life to me. I could have sunk lower. I truly believe that His Word helped me to remember that He has purpose for me on this earth. Most of all, He reminded me time and time again that I am so loved!!! Even though I am as messed up as I am (meds or no meds), He is with me.

Do I still cry? Sometimes. Do I still feel like a cloud is following me? Not as much. Do I feel like I verbalized everything well? NO. This is the limited ability I have as a human and as a human who had brain surgery. Be patient. But that song I lost is slowly coming back to me.