Long time, no post

It’s been quite a summer. I had just come home from a few days at the hospital getting over a cold, when my husband drove me back to the ER. I didn’t want to go because hospitals always mean IV to me. But he insisted. I was so tired when we got there that it’s like a dream, or nightmare, to me. I had a stroke. I spent a month in ICU and ICU stepdown and another month at rehab. I had to learn to swallow again and begin learning how to walk. It is definitely the worst of it. I could not remember why life was necessary at all. I spent quite a bit of time wondering what it would be like to die because living was so hard. Then, I remembered the wonderful children God gave me and I knew why I had to keep breathing.

I hate the way I am now, helpless, needy. I can swallow again but walking is another story. I need someone with me at all times. My father says I am a young 65 year old, 20 years from there! I want to walk out the door and drive wherever I want! But I cannot. It’s hard for me to believe, but God has this. He has loved me from the moment this started and He hasn’t stopped. He knows the end from the beginning. His ways are perfect. He loves me and my children.

Thank you to everyone who stayed with me the past two months. I appreciate you and your love towards me. Thank you, mom, for taking the boys and giving them laughter when all they had were tears. Thank you to my husband, who stayed almost every night at rehab and walked me to the bathroom. If you hadn’t been helping me, I would not have made the progress I have. Thank you, God, for loving me, especially when I was not very loveable. Thank you.

I am going for an MRI next week and I should know more. I am praying just to get through the MRI! The last one showed the effects of the stroke and the tumors were not growing. Let’s pray for good news on this one!

Joyfully, Elyse

 

 

 

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I got a B on my test

When I was in school, it was very important for me to do well on any test or paper I was assigned. Sometimes, I just didn’t do well enough and I got a “B” on the bottom of the paper. I disappointed with myself and a little annoyed with the teacher. I would scrutinize those red marks and maybe figure out how I was going to do better next time or blame the teacher for whatever reason I could think of. Either way, it was a moment of disappointment.

I felt the same way yesterday when my doctor told me there was some growth in the tumor in my cerebellum. She measured it as 25% growth. Disappointment.

The course of action now is another type of chemo. This stuff is oral and I will take it once every six weeks. I will also continue the IV chemo but I am down to one drug so it won’t take as long to administer. There is also the possibility of radiation. That is still being decided in a kind of price to earnings ratio. We’ll see.

The hard part right now is directing my energy in the right direction. There is a little devil guy on one shoulder saying, “See, the doctor is pulling one drug after another out of her bag of tricks but they are only band-aids. You are throwing water balloons at a house fire. Maybe you’ll find a big enough balloon and maybe you won’t.”

Then there is the sweet angel that says, “This is going to do it. The tumor will stop growing and even start shrinking. If this doesn’t do it, the next drug will.”

But what I want to do is ignore both voices. One pulls me down and the other throws me in the air long enough to enjoy the view but I can’t help looking down, expecting to hit the ground at any moment. As Nana would say, “I’m on the leaning side.”

I want to rest on His unchanging grace, knowing this could go any one of lots of ways. I need to remind myself that, although there is a lot of sinking sand around me, chemo drugs, hair and hearing loss, fatigue, mood swings, bad days, worse days, that is not where I need to stand. I need to stand on the Solid Rock who knew me before even one of my days were lived, who formed me in secret, who has plans that give me a future and a hope, who inscribed my name on the palm of His hands. Some days I am just barely hanging on to the Rock with sweaty fingers. Yesterday was one of those days. He hasn’t let me go, especially when I am just barely hanging on.

Next treatment, two weeks. And then an MRI four weeks later.

What’s for dinner?

In my family growing up, we would express our preference for dinner this way, “Pizza! Yeah! No Pizza! Boooo!” Of course, my sister and I would repeat this cheer ad nauseum until my father gave in.

The chorus was repeated today. Tumor shrinking! Yeah! More chemo! Booo! So the good news is that the chemo is working. The bad news is that I need another two months of chemo. And the best news is that my heavenly Father answers prayer with exactly the answer that He knows is best for me and for my family.
We serve an awesome, incomparably wise God. Amen.

MRI, check: biopsy, check; chemo next

Things have been going quickly in the Fenerty department of medicine. On Wednesday I saw my doctor. On Thursday morning I got a call that a biopsy was scheduled for Friday. I went to Duke on Thursday afternoon for pre-op. I spent the night in a new hospital room and was getting prepared for surgery Friday morning. I was home that evening and back to sitting in my chair sipping coffee by Saturday morning. Talk about a whirlwind! I did manage to read about a paragraph of my church history book and do a row of knitting. Not much, but something.

The tumor is a grade 3 astrocytoma. I am going to have four treatments of chemo and I will have an MRI to see what is going on in my cerebellum, well, other than the amazing mind power I possess (read that part while laughing). This chemo is intravenous and will take about three hours to complete. I start tomorrow.

I am a little apprehensive. I volunteered at Red Cross blood drives in college as part of my sorority philanthropy.  I was put in charge of the snacks because the sight of needles made me feel faint. Needles have become a common occurrence lately. I can’t hang out in the cookies and juice area anymore.

The side effects should not be severe. I shouldn’t lose any hair. Well, if I could just lose the grey ones… I will be very tired and I have to be on the look out for blood clots and high blood pressure. Just another day, right?

Needless to say I am a bit nervous. But, God has not failed me yet and I know He is not about to start now. I can be nervous and at the same time know that the One who sent His son to pay a debt I could not pay is able to do exceedingly abundantly more than I could ask or think will be with me in the chemo room. He’s got this.

Valley Walking

I am two for two in the bad news column. I had an MRI today (at 7:30am, who thinks it’s okay to be awake that early!) and saw my awesome neurologist. The news is not encouraging. The latest tumor in the cerebellum has grown. The chemo had no effect. The good news is that I am off the chemo. Although, I just got a month’s worth of pills last week which makes me feel like I am wasting something. Note: I am a premium member of the clean plate club so maybe that’s why I feel this way.

The bad news is that I need another biopsy, stat. Then I will probably have to go on an intravenous regimen of Avastin. This, I am not looking forward to. Blood clots, extreme fatigue and high blood pressure are possibilities in my future. Anyone want to run away with me to an island not on the map so I can pretend this is not happening?

The good news is that the location of this tumor is easier to biopsy and I am expected to be in the hospital for two days at most. This is a bonus because I don’t want my kids thinking they are getting a  vacation from school just because I have brain cancer.

I feel heavy laden right now. I explained how I feel this way. I have just walked through the front door of a skyscraper. It’s a pretty empty place. The door bangs shut behind me, and though I know there are people I love in the building with me, I cannot see them clearly. The view is hazy. I feel alone though I know I am not. I look around, trying to find the door so I can get out of this place. It is too hot and then too cold; never comfortable. It doesn’t smell like anything and the silence deafening. The door out is gone. The only option I see is a concrete stairway. It goes up and up and up. I start climbing.

My first concern is for my children. God, please protect the children you have chosen to be mine. Give them hope and joy, especially when it seems that should be the last things on their minds. Remind them, Lord, how much You love them.

I appreciate your prayers.

Joyfully, Elyse

It is the Song That Never Ends

I have lost count of the number of times I have gone to my neurology appointment and spent time hearing my doctor tell me that she is so happy with my MRI scans. It’s so easy to forget that this is serious business. Or maybe I am trying to pretend.

At any rate, the scan showed a new tumor. This one is located in my cerebellum, very close to the cervical spine. It is the smallest of the three. But, it concerns me because it wasn’t there two months ago. It also concerns my doctor. I will be going back on chemo tomorrow. There is also concern the second tumor is acting up because of symptoms I am having.

I am stirred but not shaken. Tears come easily and I fret about many things. God is my strength and my song and He has become my salvation. He has held my hand every step of the way and I know He will not let me go now. A man of God I once knew called this valley walking.

I will have another MRI in one month.

Joyfully, Elyse