Seizure Freedom!

For the last few years my seizure frequency has been declining. Considering that when they started I was having an average of 16 strong ones a day, that is pretty awesome.

On March 1st I reached a huge milestone...

3 MONTHS WITH NO SEIZURES!!!

It was also DOUBLE my previous record!

Shortly after that I had one minor seizure (ugh!) but if you don't include that, I have now gone...

6 1/2 MONTHS!!!

The freedom I feel is wonderful. Free from fear of when the next one will happen. Will I be on my bike, holding a knife, in a store, will it be a strong one, etc, etc, etc? The sensation I would get before each one was exactly like my arm muscle was a little fatigued. I really cannot tell the difference between the two sensations. 

I remember having a panic attack rock climbing for the first time post the beginning of the seizures. My arms got a bit fatigued and I was frantically trying to tell Keith to lower me down. I was terrified of having a seizure dangling from a rope against a hard climbing wall. Sadly, it was a long time before I dared go climbing again. It was just too much. Once I realized that I was going a long time without a seizure however, I focused on working my arm and grip muscles so that they were fatigued almost every day. For about the first month I had to suppress the fear that for 6 years I had had every time my arm muscle felt fatigued; the fear that a seizure was beginning. I wanted to retrain my brain to no longer associate that sensation with seizures. Every time I felt it for almost two months I would repeat in my mind I would repeat to myself that it was not a seizure, just tired muscles. "This is not a seizure Katie, just tired muscles." And it worked. I can't guarantee that I have had my last seizure ever, but I love living free of them now.

Oh, and I can drive now!!! :) OH YEAH!!!

Meet Molly

Last month God gave us a dog. That really is the best way to explain it because it just can't be a coincidence.

One Friday night the neighbors heard her barking and whining outside. When they went out to check they found a drenched little Yorkie with thorns in her over-grown tangled fur. They pulled the thorns from her fur and gave her two baths. She had no collar so she was taken to the vet to be scanned for a chip but there wasn't one. While she was there the vet trimmed her painfully over-grown nails.

The neighbor's kids took her around the neighborhood asking about her. They put up signs and posted her picture on Facebook all in a fruitless attempt to find her owner. There was one big problem. Although our neighbor is an animal person, her husband is not. At all. He left for work that morning making it perfectly clear that he didn't want that dog to be there when he got home.

That is where we enter the story. It was a Saturday and we were just heading out for a community event when we saw our next-door neighbor with her kids carrying a rather disheveled looking pup. We stop, she tells us the story, we offer to care for the dog until the owner is found. Keith and I both hoped that the kids...er...me... I mean us... wouldn't get too attached before then.

The poor dear was terrified for the first couple of days. It didn't help that Charlie and Jane were so excited about having a dog that they were all over her. We sat them down and walked through what we knew of her story with them. We talked about how scary it must be for her. After that they were better about giving her space and being gentle and slow around her, but they are kids so it was really hard for them. She warmed up pretty quickly though and after two days I was starting to feel guilty for hoping that her owners never called so she could be ours forever.

Jane just chillin' and picking her nose while Molly keeps watch from her perch.

The day the neighborhood signs came down and we went and bought her a collar with a tag that said Molly Merrill, I just kept on thinking that it was just too good to be true.

Between Keith's experience cutting his own hair, and my limited experience as Assistant Sheep Shearer, I think we did a pretty good job.

Here's why I thought that and why I say God sent her to us.

We have wanted a dog for quite a while now but I didn't want to have to train a puppy, especially potty training, while undergoing cancer treatments. Molly is, according to the vet's estimate, about 2-3 years old. She is completely potty trained, super mellow and doesn't chew on anything.

We also wanted a small dog that would work well in the house. Check. Keith and I both have some allergies to dogs, nothing severe but enough that we wanted a dog that wouldn't bother our allergies. Yorkies are very allergy-friendly dogs. Also they don't shed any more than a person. Instead of having fur that constantly sheds they have "hair" that is much like human hair. It just keeps on growing. That means that she requires a bit more grooming than your average dog but that is okay with me.

Molly laying in her sun puddle just like every morning.

Pretty much if almost any other dog had showed up that night and the owner never came forth we would have had to just given it to the shelter and prayed that she would find a good home before it was too late.

And then there was the timing. I had just returned home from my wonderful Sisters Trip less than a week before. The month or so prior to that trip had been a nightmare. A string of heart-breaking events followed by physically and emotionally painful decisions. I was mad at God. Through the tumor and the seizures I had never felt completely let down by God. He would some how always reassure me that he was there. But not now. Now, it felt like He had just left me hanging.

I am sorry for being so vague. As a general rule I try to not bring up things on this blog that I don't feel comfortable telling the public about. I am breaking that rule this time because I want to somehow explain what I mean when I say that God gave us Molly.

Molly snuggling up with me when I felt yucky on a chemo day.

My mom says that God has always spoken to me through animals. As I have thought back over my life I find that to be true for the most part. It is His unique way of letting me know He is there and aware of me. He used a mouse to show me he hears and answers my prayers. He used birds to reassure me of His love when I was pregnant and having several seizures every day.

And now He has comforted me by sending me Molly. I just have the strongest impression that, through Molly, He is letting me know that He was there during those terrible, heart-wrenching weeks. Even when I was mad at him.

She will forever be my constant reminder that God loves me and never truly forsakes us.

Walking home from the bust stop. Molly loves all the attention she gets from the kids there.

That makes Molly extra special.

Earth Day/T-Day Anniversary

Yesterday was Earth day but I missed blogging because I was on my way home from an absolutely lovely trip to New Orleans with my sisters.

Here are some Earth day/T-day posts from previous years: (I celebrated this Tumor Day 4th anniversary by not having a seizure.)  :)

2016

2015

2014

Radiation: a Blessing in Disguise

The plaque above the bell reads: Life is not measured by the breaths we take but by the moments that take our breath away. Smile-this is one of those moments!

My 29 days of radiation treatments are finished! It went far better than expected and, as strange as it may sound, it was a blessing in disguise. For one, contrary to expectations, it has drastically reduced the frequency of my seizures. The best average I have achieved is one every 3 days. Three years ago I was having 16 to 24 a day.

In the last 47 days I have had one. Only one single seizure in 47 days! The emotional freedom that has given me is tremendous!!!

 Along with her my "moms" have come for weeks at a time to drive me to those appointments, cared for Charlie and Jane so I could take much needed afternoon naps and just been a wonderful support to me and my little family. My Dad also came for the last of it. :)

We tried to make the best of the daily long trip to the hospital so almost every time we would go someplace fun. We spent several days at the extensive Missouri Botanical Gardens and frequented the Butterfly House on occasion. I am forever grateful for emotionally healing places such as those when wild places are so far away. Each of those trips could use their own post but this will have to do.

Another blessing has been the time I have spent with Jane. She has been my little "radiation buddy" and has taken the long trip to the hospital and back again almost as many times as I have. And she has been incredibly great about it. I let her help me ring the "victory" bell in the lobby after my final treatment. It was a moment filled with gratitude. Gratitude for the blessing of the technology that is available to give me this freedom, for the doctors and technicians who were so great and kind, and for the beginning of the realization of God's promise that the seizures would end.

 

Walking away after ringing the bell with a lump in my throat. Another part of the journey behind us.

(And I got to keep my mask which the kids have had a lot of fun with. :)  )

Radiation

The room I spend roughly 20 minutes in five days a week for six weeks. The little wing looking things on the side go forward and the round part on the top moves back and forth. Well at least I think it does. I was fitted with a VERY tight mask made just for me in which my head is firmly attached to a head mold that is bolted to that table during my treatments. (Google brain tumor radiation pictures and you will get the idea.) This mask is so tight that it prevents me from actually opening my eyes enough to see much of anything, but I do notice a shadow occasionally passing over my face. That table is every bit as uncomfortable as it looks, in case you were wondering. It can move up and down, forward and backward, side to side, to get me lined up to the exact place I need to be so that the radiation goes right where it needs to be in order to blast the tumor to smithereens. On the plus side I do get to pick a Pandora station to listen to. I highly recommend The Piano Guys for both MRIs and radiation.

As some of you already know, I began radiation treatments three weeks ago. (Chemo will follow.) As you can imagine, this was not a decision that was easily made.

When we first moved here we met with Dr. Kim, my new neuro-oncologist. Access to a more comprehensive cancer team was one of the reasons that made me want to come here in the first place. After going through my medical history with him, he said it sounded like I should see a neurologist. I told him that I had wanted a neuro-oncologist so that I could start doing more to actually get the tumor to go away in the hope that by doing that the seizures would go away. He agreed that that was a good possibility and asked if he could present my case before a group of specialists the following Monday. Apparently every Monday night a group of doctors, within any specialty dealing with brain cancer, meet to discuss various cases. (That sounds both dull and fascinating all at the same time.) So the following Tuesday afternoon I got a call saying that the unanimous recommendation was radiation followed by a mild form of chemo. Well, related to other forms of chemo that is. Also, the genetic makeup of my particular tumor makes it respond well to radiation and chemo. it is also a low-grade tumor now but it has a high probability of getting really nasty in the future. It only makes sense to treat it now when we don't have to be really aggressive with it.

My reaction to that news was mixed. One the one hand I was scared. Who wouldn't be? On the other hand it felt so good and so right to finally be doing something really proactive about the tumor. (I feel that I should acknowledge here that there are other treatments termed "alternative" that people are proactive as well, and I don't deny their worth. All that I feel to say about that on this blog is that for me, at this time, I feel that it is appropriate to utilize some of those as complimentary to my radiation and chemotherapy.) It also was comforting to know that this was not a recommendation made by one doctor. It was made by a room of doctors from several backgrounds. More than that though, I have had two very real sacred experiences that told me, without a doubt, that these seizures would not last my entire life. That promise has given me hope and that hope has given me the motivation to continue to search for a cure even when doctors say that, because none of the seizures meds have worked, the goal is to simply improve my quality of life with the seizures.

There are pros and cons to radiation, specifically my kind of radiation.

Cons:
 -extreme tiredness. By the latter part of the week, for me to be a functional human, it is crucial that I take about a two hour nap in the afternoon. And I still sleep through the night just fine.

-my brain doesn't work as well as it did before radiation (and that was worse than before the seizure meds). People joke about being forgetful and not remembering a particular word, or why they walked into a room, or having a conversation about something. But these are things that happen multiple times a day, everyday. When there are beams of radiation passing through your brain tissue, no matter how small and focused they are, they still do some damage. On the plus side, I am young and, with proper care, brains can heal from relatively small injuries as this. Basically, this shouldn't be long term.

-you get dizzy at times.

-you get headaches at times.

-your hair falls out, temporarily, in patches where the majority of the radiation enters your head. (whimper)

 

Luckily it is becoming hat weather... And even if I become one of the rare cases where it doesn't grow back, I would much rather go through life without hair and without seizures than the other way around. If that was the sacrifice I had to make to live the rest of my life without seizures and all that that brings with it, well I would just buy a lot of hats. (You generally need one anyway when climbing mountains. ;) )

-and your scalp itches. A lot. Hooray for aloe vera mixed with lavender oil! 

Pros:

-your extra wonderful mother and mother-in-law, come to help you out and you get to have fun times that you wouldn't have if you didn't have someone to drive you around. Seriously, this as been the second greatest blessing of the whole radiation thing.

So what is the best thing you ask? Well I will tell you...

you may just set a new record for the longest time you have ever gone without seizures!!!!!  

 (That is the largest I could make the font.)

That includes post-surgery periods. As of today I have gone 18 days without even the tiniest of seizures. 18 whole days. Over two weeks. 

What if I have had my very last seizure. 

I don't hardly dare to think of that possibility...

Life's Seasons

I made the mistake of looking through old blog posts at night. Looking through posts before the seizures always make me ache for the freedom I had. I took it for granted. I took it so very much for granted. At least I enjoyed it.

It is hard at times to stay positive. Growing up I was surrounded by nature. In college, the mountains with their trails and climbs were right outside my front door. I biked everywhere without fear of having a seizure, losing control and crashing. In Raleigh I could walk to Lake Johnson - my refuge and place of peace. I could drive to the arboretum and watch Charlie run free.

I don't want to dismiss what I do have; the park just down the road with trails that wind through the rows of homes, friends that give me rides to weekly playgroups. How I am going to miss that weekly bit of social interaction! I am grateful for all the people here who have done so much to give me the ability to get out. Don't get me wrong on that fact, they have been wonderful.

I still miss the freedom and independence that comes with the ability to drive. I could wake up in the morning and decide that I want to go to the lakes with the kids and go. Just go. I wouldn't have to have made plans days in advance to have someone take me. I wouldn't have to feel like I was being selfish asking for someone to take me.

I miss being able to drive. Rather, I ache at times for the freedom that driving brings. I also miss being near natural places. I am within drive-able distance from them, but when you can't drive it doesn't make that big of a difference.

I keep on trying to remember that there are seasons in life. That how things are now doesn't determine the future. I try hard. I also remember that there are so many people out there who have it worse than I do. Not being able to take a ramble in the woods when they want, not being able to drive, or seizures, are all worries that they would trade theirs in for in a heartbeat. Just thinking about the heart wrenching trials that others deal with makes me feel guilty for complaining at all.

But it is still hard. There are still nights when I can't fall asleep because there is a lump in my throat. And there are still others when that lump turns into quiet tears of mourning for what was.

I know this is just a season of life and at some point it will change into another season. Hopefully it won't be a season in which I wish with all my heart that I could have this one back.

Ecclesiastes 3:1
"To every thing there is a season, and a time to every purpose under the heaven"

I wish I could more fully understand the purpose of this season.

Maybe when I do, it will end.

Seizure Groupies

Lunch at a lovely city park while there was a break during the conference. 

Last Saturday Keith and I took a trip to Minneapolis to attend the first Epilepsy Foundation of Minnesota conference.

We came away with some good information. It was especially nice to grab a minute with the doctors or specialists after the sessions to get there opinion on what we should do next at this point.

We also came away with some "swag" from the many companies and organizations that had booths at the conference. The kids especially like the pencils that change color as they change temperature and have brain erasers. Pretty cool.

I came away feeling very grateful for the many many support networks that are out there for people with epilepsy. Especially for those who don't know what the cause is. I am one of the blessed few who know why they have seizures. My seizures are a (very obnoxious) symptom of the tumor. At times I feel helpless, but knowledge is power and I am blessed with the knowledge that so very many others at that conference do not have. My heart ached as I talked to a mother of a young daughter with epilepsy. Like so many others there, no one could tell her what was causing the seizures that were slowly erasing the daughter she once knew.

It is times like these that make me thankful that I have a tumor.

Hello VNS

Last month I had my first grand-mal since the previous November. Almost made it a year. Missed it by a month. Oh snap.

The partial seizures that I still have 1 to 3 times a week are no fun, but there is absolutely nothing, NOTHING, neat about a grand-mal seizure. Nothing neat about losing control of your own body, not being able to do a single thing about it as it jolts you around, convulsing painfully, smacking you into things, making you come in and out of consciousness only to wake up not being able to move even your little finger. Nope, not neat at all. Even after having several the last few years (side note: they have become MUCH more infrequent, and I have it so much better than others with seizures) they still put me in a deep slump for a few weeks following. I still get a little panicky whenever I sit in the computer desk chair where I was when I had it. It is also where I am sitting now...

This last one was the worst as far as bodily harm goes. (Pretty great that I haven't had any serious injuries with any of them!) I came out of it with a shiner and a very painful shoulder. I had landed on it and couldn't change position at all to alleviate the pain. The first thing I said to the friend who was the first person to get there was to please roll me off this shoulder! The pain was still interrupting my sleep a couple days after the fact so we went in to get it checked out. Mostly I wanted to make sure that there wasn't any serious damage that I would make worse by trying to use it. They took a few x-rays and determined that there weren't any broken bones, just some serious muscle bruising.

This was one of the x-rays. It features my lovely VNS device. I think it is neat that you can see so much detail in it. It's number, the different parts of the battery, the wire as it loops around making its way up to my vagal nerve and even the little clasps that attach it to the nerve. Pretty neat, huh?

There is still absolutely nothing neat about a grand-mal seizure. I would be quite delighted if I never had another one It was however, neat to see the device that until then I had only felt just under my skin.

Hello VNS.
Nice to finally meet you.
I wish it had been under different circumstances.
We really shouldn't meet like this again.
Ever.

45 minutes

The other day I was reading through some of my journal entries from a couple of years ago when the seizures were really bad and many days were very dark. I didn't write often because of that. Perhaps I should have. This particular entry stood out to me. I wrote it during those precious few weeks after Jane was born and before I had the brain surgery.

I have been a bit hesitent to share this here because I didn't want to share something so personal and I didn't want to put a lot of focus on my struggles when I know that there are a lot of people struggling with worse things. Things that make mine seem tiny. I feared as well, that it may offend the wonderful people who love me and served me so much. And I never, never want to do that. However, I have felt strongly the last several weeks that I should post it.

I want to share it because it reminds me of that time when, despite encouragement from others, some days it was hard, nay almost impossible, to keep from letting the darkness and fear over take me. It was a battle I fought almost every single day. Don't get me wrong; there were many happy wonderful days, but I would be lying if I pretended that those times when I felt completely hopeless never happened. For better or worse, very few people saw them because I am one of those who don't break down in public. I would go into my dark bedroom, curl up in fetal position on the floor, and sob and pound the floor in private. I don't want to remember those times for the sake of dwelling on them, but rather to see what I had a very difficult time seeing then; it would get better. In some ways I wish I could go back and tell myself that. It will get better. So much better. On the other hand, as strange as it may sound to some, I am glad I can't. You see, because I went through that, I can understand a bit better what it is like to experience real anger, doubt, depression, and overall darkness.

I share this here in hopes that it may possibly help others who are struggling, truly struggling, to know that it will get better. Although I couldn't see it when I wrote this, I know it now.


"November 23, 2013 Walking in the Forest Around Lake Johnson

Today I took a 45 minute walk. Alone. It was the first time in 7 months that I have gone anywhere alone. 7 months! It as been so hard, so much pressure. I have felt the need so often to burst and scream. To breathe. To not feel eyes on me watching for the next seizure. Almost constantly I feel like I have been the focus of so much attention these last several months. A lot of it I appreciate: the prayers, fasting, help with meals and play dates for Charlie, and even the almost daily service of women coming over to just be with me. But I hate the sympathetic looks and uplifting words that come from the mournful faces of people who don't know what to say. I know they have the best of intentions, but sometimes I wish they would just say "that must really suck." Often I just want to know that someone understands or at least is trying to.

I spent a lot of those precious 45 minutes of alone time mourning my loss of independence these last 7 months and wondering when I would ever have an opportunity like this again. I kept fighting back the tears and trying to focus on the sound my feet made as they swept through the carpet of leaves and the sound and feel of the wind as it rushed through the empty branches. I tried hard to enjoy the smell of the cool air as it rushed into my lungs and the faint taste of decaying leaves that it brought with it. I have always loved the North Carolina autumns. I struggled to enjoy my brief moment without adult supervision, but the lump in my throat just kept growing.

Eventually I sat down on a log and told God that I needed help. I didn't want to go home in a worse mood than when I had left. But when I thought of going home and fighting Charlie to get ready for his nap, feeding Jane and finally searching for something of my own to eat, it made me want to keep walking for a long long time. I knew I couldn't though. I had told an anxious, but understanding, Keith that I would be back in 45 minutes and I didn't want to make his anxiety become panic.
The thought entered my mind to force myself to focus on the now. Push out thoughts of the past 7 months, push out thoughts of what would meet me at home, push out thoughts of the myriad of struggles that awaited me in my near future, push out thoughts of the unknown that lay beyond that. Just focus on now.

It took a lot of effort, but as I practiced yoga breathing and focusing on things I could feel physically (wind, log, ground) it came; and with it I began to feel happy. The weight I carried was gone. The things in the past and future were not all happy and pleasant, but that moment was. I was happy when I focused my efforts on experiencing that present peacefulness and not tainting it with thoughts, worries, and fears that would pull me away from the beautiful now."

If only I had known then how very good the seemingly distant future would be.

We Live in a Beautiful World

 Whenever I hear the song of a bird

 Or look at the blue, blue sky,

 

Whenever I feel the rain on my face

 

Or the wind as it rushes by,

(not exactly a velvet rose...)

Whenever I touch a velvet rose

 

Or walk by our lilac tree,

 

I'm glad that I live in this beautiful world

Heavenly Father created for me.

 

He gave me my eyes that I might see

The color of butterfly wings.

He gave me my ears that I might hear

The magical sound of things.

 

He gave me my life, my mind, my heart:

 

I thank him reverently

 

For all his creations, of which I'm a part.

 

Yes, I know Heavenly Father loves me.

Keith and I were (partially) joking last night about how nice it would be if my first seizure and the discovery of the tumor had been on a day that is easier to forget. I have been thinking about that today and I think it may be a good thing that it is on a day that is not only easily remembered but a day to celebrate some of God's greatest gifts. Each year I can look back and see how many blessings He has given me and how He has guided me along the way.

At the very least, it is a great day to give thanks that I am still here on this beautiful earth that I love and enjoy so much.

And someday, on this day, I will be able to look back and give thanks that the seizures are gone. That day will come. I know it.

Happy Earth Day!

Becoming Bionic

Really early Friday morning (I really hate that they always schedule surgeries early in the morning) Keith and I went to the hospital for a same-day surgery. The purpose was to implant a vagal nerve stimulator (VNS) device. It is a kind of pace maker for the brain.

Photo taken from cyberonics.com

  This is the basics of how it works (if you don't really care about how it works just skip to the next paragraph ;) ). There are two vagus nerves, one on either side of your neck. They are in charge of telling your body to do all the things you don't have to think about (heart beating, breathing, etc.). The implant is done on the left side because it sends more signals to the brain while the right one sends more signals down to the heart. I will have it turned on in two weeks at which point it will begin stimulating (sending little shocks) to the nerve at regular intervals that can be adjusted by my neurologist by this cool wand thing. A common setting is 30 seconds of stimulation every 5 minutes. The side effects are minimal and only occur while the nerve is being stimulated. They include tickling sensations in my throat, hoarseness and shortness of breath. Another bonus feature is that is comes with a magnet that can trigger a stimulation when I feel a seizure coming on. This can make the seizure stop completely or at least minimize it. 

Very rarely does it take the seizures away completely, though it may decrease their frequency (sometimes dramatically). It is designed to decrease the medications people with drug-resistant epilepsy (i.e. the drugs just aren't working) need to take which, it turn, can dramatically increase their quality of life. Boy can I testify to that!!! That alone would be worth it!!!

The positive results won't be immediately evident. The side effects decrease over time and the benefits increase over the following months and years. So it will be yet another test of patience, but Keith and I both feel that this is the right road to take. During the weeks before the surgery I told Keith that I had never been so excited about a surgery! I really am excited to see how this will affect my seizures over time.

P.S. I am discovering that same-day surgery isn't the same thing as same-day recovery...