Sunday, October 23, 2016


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.

 -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! 

-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...

Saturday, October 1, 2016

An Adventure Filled Black Week

One of my most favorite people (and college roomie) came up from Oklahoma with her kiddos to spend the week with us. We had so much fun! They lived in Hawaii for the last several years so Charlie and Manu (as she refers to him on her blog) had never met and I had never met either of her boys.
They all hit it off well (except for a few skirmishes between the two older boys...).

Jane is holding a berry for D to smash with the rock in his hand. :) Jane referred to D as "the baby" up until the day before they left. Manu kept on telling her that D was a toddler, not a baby.

"The baby" wanted to come inside but this face was so incredibly funny that we left him out for a while just to get some pictures of it.

We made the most of our week together and did something fun each day. One excursion was to the butterfly house. I could hang out there for a long time. Watching butterflies is so relaxing.

 Manu was the first to have a butterfly land on him.

 By the end all of us did, except for the littlest two who moved around a bit too much.


 Newly created butterflies!

 Spending time with this wonderful woman makes my heart happy. (notice the blue butterfly photo bombing in the foreground)

 Oh, and if you could knew what sound bees made you got a free honey stick at the gift shop. Yummy sticky goodness.
Hanging out at the super cool playground down the street.


 Jane in her "popcorn."

When Charlie found out that Manu had never made a baking soda and vinegar volcano before we absolutely had to do one. Complete with dinosaurs in peril.

 Manu walked with me one day to get Charlie from the bus. As we walked he told me of his inner conflict. He loved being here but also missed his dad who was back in Oklahoma. Sweet boy.

One afternoon I heard the rumble of thunder and said that it sounded like a storm was coming. Manu, in complete seriousness, looked up and told me that he would go outside and take a look because, as he put it, "I am a meteorologist."

 I hadn't taken a good ol' ramble in the woods since coming here so we took the opportunity to do so. The extensive Busch Memorial Conservation Area is about 20 minutes away so off we went. It was incredibly nice to be back in the woods. It is comforting to me to be surrounded by trees. Almost as if they are sheltering me from any outside turmoil. Even a short time in the forest makes me happier.

 It is fun to see how much my kids enjoy it too (at least almost always ;)  ).

Friday, their last full day here, I excused Charlie from school and we spent the better part of the day at the super cool science center. In the picture above our budding statisticians are learning about probability curves.

The Black's make promising paleontologists.

Much to my surprise, Jane's favorite part was the big T-rex that moved and roared.

Charlie's favorite part was the excavator with real controls. No surprise there.

This was cool. as you made mountains and valleys with the white sand the computer shining light from about would adjust to make topographical lines on the sand formations.

Watching cars go by on the freeway below the science center bridge.

The week went by entirely too fast. Come back soon Deb! We miss you already!

Wednesday, September 7, 2016

Photo Dump

Some random pics from the last couple of months...

One of the best part of moving, at least for the kids, is jumping in and crawling through the loads of packing paper the movers use.

When Charlie and Jane pretend to be going some place it is almost always to one of the grandparent's houses or... Costco, which is where Jane was headed in her little pink car.

Three mountain jays hogging the feeder. The majority of the birds show up to eat right around the time my family wants to eat as well. This has resulted in more than a few late dinners because I have a rather difficult time focusing on getting our food ready when there is so much avian action right outside the window.

One of the Ruby-throated Hummingbirds guarding the feeder. Do you see her perched on the wire?

Hummingbird feeder aren't just for the hummers. Downy Woodpeckers apparently are fans too! These two are frequent visitors to our yard.

Jane's morning hair. Always impressive, always a mess.

Jane got the side taken off her crib! About a week after she got it taken off she started getting out of bed a lot so Keith put it back on. The entire time he was putting it on both kids cried and pleaded with him to leave it off. We apparently are the meanest parents ever. Ever since it came back off a few days later, though, she has been pretty good at staying in. Oh, and she pretty much potty trained herself. Keith and I are still in shock at the stark difference between our drawn-out disaster experience of potty training Charlie and her. I would have kept her in diapers until she was in kindergarten if it meant not going through a Charlie experience again. Maybe she picked up on that...

The week before school started the nearest cousins drove down for a visit! It included a trip to the huge and free zoo here. That is right, it is free. Just another reason people should come visit us. ;)

There was this gorilla statue that every kid wanted to get onto. It couldn't fit all without a major disaster so we compromised with doing boy/girl pics.

Jane was super cool and cute with her pink hat, purple sunglasses and little attitude that I had to get a picture. She didn't want anything to do with it but I got this one and I think it represents it well.

Merrill Water Park! It was all fun and games until they broke the sprinkler. The good news is that we haven't had to water the lawn since.

They were making mud pies but it looked like more of a mud puddle.

I like to think that I handle kids playing in mud fairly well. I think it is healthy for kids to be free to get their hands in the dirt. Mud worked deep into hair however, is a different story. It took loads of shampoo and a rather unpleasant wrestling match in the tub to get it out.

You can't see them in the picture, but Jane is staring intently at a little group of baby bunnies hiding in our tiny garden box. Bunnies seem to like us this summer.
My super awesome hubby designed and made this super awesome bookshelf for the kids...

...with a little help from our super awesome kids.

Bugs, bugs and...

...more bugs! Jane is actually becoming more drawn to them and cautiously wants to hold them now. Well, most of them.

And THIS big guy started kindergarten!

He likes it a lot although it has been quite the adjustment for both of us. I am getting used to a less flexible routine and so is he. There were about three weeks there when almost everyday he would come home and I would wonder what happened to my Charlie. He was mister grouchy pants! I was describing what he was like to a friend and she pretty accurately said that it is like he used up all his energy to sit still and behave well at school that when he got home he just couldn't keep his crazy emotions in check any more. Gratefully we are learning together how to make the transition from school to home better and things are improving. At least the adjustment didn't seem to dampen his excitement for school!

With Charlie in school I have had more time to spend just with Jane. At first she was grouchy because she missed her older brother, but now she seems to be happy to spend time with me. It also helped when she realized that when Charlie is away she can play with whatever she wants, how ever she wants without Charlie there to boss her around. In the above picture she is showing off the bagel with cream cheese that she made for me. :)

Still she loves going to get Charlie from the bus; rain or shine.

Life is good.