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

It's Back!

My hair is back!!!! And that, my friends deserves a blog post. So here, for your enjoyment, is the photo documentation of my hair loss and its lovely  come back. 

This was the beginning - sometime in October. I thought this was going to be the extent of it since the doctor said to expect patches of hair loss about the size of a quarter.

He was wrong.

It kept on progressing...

... but this random patch in the front kept holding on. When I tucked it behind my ear and wore an ear warmer, I could still hide the bald spot.

That didn't last long.
Around this time my head also got incredibly tender.  The weight of my ponytails and even turning my head on my pillow at night, would pull on the edge hairs making my scalp ache.

So I took the trimmers and cut it off. It was a bit sad to see all that hair on the floor but it felt SO much better.

The  perfectly straight hair line above my ear wasn't shaved, that was just how it fell out. It was odd but gave me hair all along the borders of my hats.

That was the extent of the hair loss and it lasted until just over a month ago. Then it began its fuzzy come back!

There are a few bald spots that never grew back after the surgery over 3 years ago.

Sorry for all the selfies. I am really excited. :)

The kids thought it was fun too. Jane would squeeze herself between my back and the couch and rub my super soft new hair while I read her books. 

This is how it is now.  I have thick curly patches and thinner straight patches. Also, it is hard to see in the pictures, but there is a LOT more grey than there was before. :( The radiation doctor told me before I started radiation that sometimes the hair will grow back a different color and/or a different texture than it was before. I joked that it would be nice then if it all fell out and grew back without any grey. Well only most of it fell out and it came back with more grey.

At least I have hair again! And hopefully as it gets longer the thin parts will fill in more and it will decide if it is going to be all straight or all curly. I don't have a strong preference either way, but I don't know what to do with patches of both.

For now I am having fun with head bands. I am getting quite the collection.

I am pretty sure I have taken more selfies since radiation than I have in my entire life. Not included here are all my hat selfies, I got some cute ones from dear friends. 

Really the timing worked out perfectly. Hair loss during hat weather and just as it warms up, it comes back. :)

Hair (or lack thereof) Update

I know this is kind of a strange thing to blog about, but I wanted to document my journey and this is a part of that.

This is (hopefully) the extent of my hair loss. Pardon the hat hair.

The baldspot spread along the left side which made it impossible to hide with the ear warmers that I have been given by sweet friends. So I decided to just cut it all of and go with a short pixie since I am going to live in hats anyway for the next few months.

The day before cutting it off.

I have realized two things since loosing half my hair:
One, my exposed scalp is incredibly sensitive. Like really sensitive.
Two, I took for granted how much heat my hair kept in. I am constantly cold now and sleep in a loose (remember the sensitivity) fleece winter hat. Even with a pile of blankets!

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...

Celebrating Earth Day

Happy (belated) Earth Day!!!

As I write this, Keith and I are driving from Fargo to St. Louis, a trip which is taking us south with the Mississippi through the center of the country. We drove out of the town which was slowly clawing it's way out of winter. It kept on slipping back.

Iowa had made more progress. It had a foot firmly placed in the door of spring and a few farmers were beginning to plant their fields.

Missouri had flung the door of spring wide open with its colorful flowers and blossoming trees.

One of my absolute favorite things about road trips has always been watching out the window to see God's handiwork change. Sometimes the change would be dramatic, such as traveling west across North Dakota into the badlands or from the peaks of the Rockies onto the flat prairies below. But most are subtle. The  gradual change of vegetation, or the slow from utter flatness to the gentle rhythm of traveling over low rolling hills.

It will come to no surprise to those who know me that this is one of my favorite scriptures:

Doctrine and Covenants 59:18-20

Yea, all things which come of the earth, in the season thereof, are made for the benefit and the use of man, both to please the eye and to gladden the heart;

Yea, for food and for raiment, for taste and for smell, to strengthen the body and to enliven the soul.

And it pleaseth God that he hath given all these things unto man; for unto this end were they made to be used, with judgement, not to excess, neither by extortion.

God intended us to fully enjoy, not simply use, his creations. I want my children to know the simple joys of breathing fresh air as they explore open places and forests, watch small bugs in the grass, hear the magical sounds of birds, and feel cool mud squish between their toes. I want them to delight in nature's wonders, as I do. God saw fit to preserve my life on Earth day three years ago and I am going to do my best to live it fully; not just for my sake but for that of my dear children. They deserve nothing less.

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.

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!