Saturday, March 24, 2012

Welcome Spring!

My very favorite time of year is autumn. It always has been. I love the colors and the smells and the way the sunlight looks just a little different from the rest of the year. It has a sort of warmish amber glow as it filters through the red, orange, and yellow leaves which is different from the crystalline starkness that it has in the winter, or the mellow haziness of summer. I can't, however, escape the melancholy I always feel as the leaves fall and the season draws to a close.

This year has been a little different. I am loving spring more than I ever have. Maybe its because I have been thinking a lot about hope and faith lately. Spring is full of hope. Full of new beginnings. My favorite sign of spring comes when the lovely birds burst into song and break the quiet stillness of winter. I always hear people complain about the noise they make so early in the morning, but I can't wait for those first few weeks when you really appreciate and notice their sounds before they become routine for the summer.

I haven't posted in awhile. I meant to, but we have just been outside almost everyday trying to soak up this gorgeous weather and enjoy ourselves. So here is a little update.

My sister had a birthday on March 15th. My mom and dad both had to work so Brian, Alissa, Jake, and I went to starved rock and had a really nice hike. I was afraid Brian would be really tired because he had been the previous few days, but he had a burst of energy we attributed to the great weather, and actually, Liss and Jake got tired before us! We had mexican for lunch and were underwhelmed. I think we were there at an off time because the service was stinky, but then we bargain hunted at Big Lots and came home and hung out for a little bit.

Saturday, we went up and had a cookout at my parents house with my cousin Andre, and our good friend Joe. That was fun. My mom made her macaroni salad and my dad's burgers were great so I was in Heaven.

We have been taking Jack for walks everyday. Sometimes two. He loves it. And our sweet lady next door Dorothy gave us a bouquet of beautiful sunny yellow daffodils! I tried and tried to get a picture of them, but it just paled in comparison to real life so much that I couldn't bear to post it.

Midterms were this week at school. With the time I missed and the studying I did NOT do last month, my anatomy grade is now a high C. I can definitely bring it back up to at least a B though. And I was accepted into ICC's nursing program! I almost forgot about that. For the sake of finance and continuity, I decided to just finish up my RN there. Then I can work on a bridge program for my BSN hopefully at OSF. I only have eight classes left and I am anxious to get that part of school done.

On Thursday, we met my mom for lunch. It was nice to see her a little extra this week. Thursday and Friday both felt like Saturdays to me. Brian and I went to Famous Daves last night for fish. We didn't plan on it, it just kind of happened and I don't regret it. Tonight, our first real Saturday of the week, we are making Rick Bayless at home and watching Star Wars. All we have been doing is watching sci-fi all week and I love it.

The oatmeal bread I just baked has been tried and approved by Brian. I love baking bread. I love the whole process of making it from scratch. It feels good. You just start with these plain raw ingredients and then combine them just the right way, and then you have to really knead it. It is tough and it takes time to get to the right consistency. Then you have to be very patient and wait and wait while it rises. Then let it rest, then shape it into a loaf and wait some more while it rises again. Its such a painstaking process and when it turns out well its just so rewarding. And I love Brian's reaction. He was almost incredulous the first time I made it for him. I make it often, but each time he responds with the same joy. He loves it. I love what I am coming to recognize as the "hot bread smile." I wait for it and I am never disappointed. There is a parallel to life in there somewhere. But this entry is long enough.

Some pictures from the last couple weeks.

Birthday Duck Face

Lissa in her new sunglasses (birthday present from me!)

Jack friend.

At this moment we were getting ready to leave. He was devastated.

Today's oatmeal bread. You can get a peek of Dorothy's daffodils next to Franz in the background :)

Freshly baked, sliced and enjoyed!

Enjoy the weather everyone and don't forget to look up! Its better than looking down.


Wednesday, March 21, 2012

Brian Speaks

And now the LORD shew kindness and truth unto you: and I also will requite you this kindness, because ye have done this thing.”

2 Samuel 2:6

I regret that in the 36 days that have passed since I had the initial seizure I haven’t been able to personally thank everyone who has given such tremendous support - material or otherwise - during this difficult time. While in the hospital I was often sedated and thus was unaware of many who were present throughout the whole ordeal. And since returning home many more have sent cards, letters, and other items that have lifted mine and Lindsey’s spirits greatly. I lack the literary ability to express in words how much it has all meant to me. Merely being remembered by so many in their thoughts and prayers has been overwhelming.

I always supposed that I would confront a serious illness such as this at some point, but had hoped it would be later in life. However disappointed though, I do not believe my relatively young age to exempt me from any of the travails that so often characterize this mortal life. I pray to live long enough to return a portion of the love and kindness I have received in such abundance.

So in short, I just want to sincerely thank everyone who has helped us in any way. Every day I’m learning of new things – large and small – as my memory of those fateful days comes back to me. I hope that everyone is doing well, and to be able to visit with all of you soon.

 Love Brian

Tuesday, March 13, 2012

Four weeks later

We cannot even believe that a month ago almost to the hour, Brian collapsed and our new life began.  What a fast and tumultuous four weeks we have had!  As overwhelmed as I have been at times by fear and uncertainty, I am overwhelmed, more still, by the kindness of our family and friends. I simply cannot find the words to express my most sincere gratitude. From the meals and mail to the visits and care packages, I have never in my life felt more surrounded by love and support.

This week my sweet childhood friend Amy made me a basket full of goodies and dropped it off as a surprise for me at work. It was full of things that were tied to memories of the goofball things we did as little girls. Looking through it, I had the first really genuine laughs of the week and got to share some stories with Brian.

Last week we got a great box full of Harry and David goodies from my dear friend Emily who currently lives in Philadelphia. She and I worked together at Barnes and Noble and became close in 2005. She is one of the dearest friends I have made in adulthood.

Alissa came to work this week too and brought an Easter basket with some of mine and Brian's favorite Easter candy. He just announced to me that he is going to eat one of the caramel eggs she included while he listens to Brahms. :)

Anyway, I honestly mean it. I am so very thankful to everyone for the continued prayers and help of all kinds. I don't feel very eloquent tonight, but I just never realized how many people really love and care for us. I guess no one does until there is a crisis. But I promise to try even harder to be mindful of opportunities to serve others. One of my favorite quotes comes from the April 2011 conference:

"Often, the answer to our prayer does not come while we’re on our knees but while we’re on our feet serving the Lord and serving those around us. Selfless acts of service and consecration refine our spirits, remove the scales from our spiritual eyes, and open the windows of heaven. By becoming the answer to someone’s prayer, we often find the answer to our own."

I was moved by that talk when I heard it, and it carries special significance to me now.

In clinical news, we did have the appointment with the nurse practitioner from neurosurgery today. We had a much better experience with her than with the medical oncologist. She sat and listened as I asked each question on my very long list, and answered with empathy, confident knowledge, and compassion. We learned that some of the annoying symptoms Brian is having right now like weakness and soreness at his right temple are completely normal. He gets to wean off of the seizure medication already starting this week, and he is released to drive! He is very excited about that.

Brian really wanted to know about prognosis. The other doctor really avoided that question. She said that honestly, she couldn't even venture a guess.  He already has one of the rarest brain tumors, but even more rare is the onset and stage for someone so young and healthy otherwise. She said a lot of people with primary brain tumors are diagnosed in their 50's, 60's, and 70's so Brian is definitely NOT normal and that can be good or it could be bad. Of course then Brian asked, "well, what would my prognosis be if I were in my 50's" and she said maybe 7-10 years. She did clarify for us that those statistics to refer to survival time and not recurrence time. She said a person with a brain tumor like his could live for 10 years regardless of whether the tumor recurs at 2 or 8 years.

They discussed Brian's case at tumor board yesterday, instead of a week ago like we thought. His surgeon, the medical oncologist, and the radiation oncologist all agreed that we should wait on the radiation since he is so young. We just don't want to spend it now and then not have it when the tumor comes back.

He is also released to go back to work April 9th. One of my concerns was his seizure risk going back to work. The nurse practitioner assured me that since he will be having MRI's every 3 months, they will be able to see the tumor come back millimeter by millimeter and they will see something long before he would ever have any symptoms again.

And the other good news, that was an answer to our prayers is that the oncologist that specializes in brain tumors will be back in July and we will get to switch to him! He has been doing a special fellowship at Duke University for a year so hopefully he will come back with lots of information.  Its funny because while we were waiting to see the doctor last week, I was reading his biography and I read that his hobbies and interests were playing piano and reading about history. I told Brian I wish he was our doctor because those two have both of those things in common. Just from reading about him I feel like I like him much better.

We also got copies of Brian's op reports and a picture of his brain before surgery that I will post so you can see how big his tumor was. The MRI picture is backwards for some reason so right is left. You can see the tumor as a whitish mass on the left side of the brain. Its hard to distinguish in the MRI what is tumor and what is swelling, but you can definitely see that it is pushing the midline of his brain off to the side. So glad that is out of there!

So here is the picture.  The tumor is circled in red. Hopefully, I get to just post fun things we are doing for the next few weeks while Brian is off with no restrictions.


Sunday, March 11, 2012

"love life, and see good days"

Today, I was feeling really sorry for myself. I was having a pity party of supreme proportions and I didn't even want to stop. I didn't want to go to church when I woke up, but luckily Brian did so I pretended I did too and got ready. While we were there I found myself choking back tears the whole time. It wasn't even an especially emotional meeting, I was just feeling sappy. I took several opportunites this afternoon to duck into the bathroom or slip outside with Jack just to have a little cry without Brian seeing. At one point, I was sitting on the front step listening to the wind with tears in my eyes and I just prayed a quick angry prayer, "This isn't fair. Why is this happening? I hate my life."

Brian came out and we took Jack for a walk to the park and enjoyed the extra hour of sunlight. When we came in I was reading a catalog from a church book store and a scripture stood out to me. I went and grabbed Brian's bible and turned to 1 Peter 3:10 and read, "love life, and see good days." For some reason, I still stand amazed when I receive such very personal answers to my prayers.

The Lord is always with us. He knows the desires of our hearts, but He wants us to reach out to Him in prayer so that he can meet us half way with an answer. The more we strive to draw closer to our Father in Heaven, the easier it is for Him to communicate back to us. This is one of the sweetest blessings in life.

Even when our prayers are belabored, and not full of the gratitude that they should be, He will hear and answer us. The gentle command to "love life, and see good days" was exactly the answer I needed tonight. We are blessed with the agency to choose how we respond to the variety of challenges we will be faced with in this life. We may not be able to change the circumstance, but we most definitely can change our attitude and make the choice to love life instead of hating our current situation. And each day is simply a day, it is up to us whether it will be a good day or a bad one. Sometimes I forget that simple truth. Brian and I talked and promised each other to try to go forward with more positive attitudes. We have both been a little down since our appointment on Friday.

We see the nurse practioner for the neurosurgeon on Tuesday and the radiation oncologist on Friday. As always, your continued thougths and prayers are both appreciated and needed.


Saturday, March 10, 2012

"Hope is not a wish, its the powerful promise of better things"

Well, today I am struggling a little bit. We went to see the medical oncologist yesterday. Luckily, I was warned ahead of time that he was "kind of a cornball" because I really just didn't feel like he was very compassionate. He has a very nonchalant attitude and that really bugs me because this is a huge crisis in our lives.

We had a lot of questions and I was very anxious as we arrived at the Cancer Center. Everyone there was very nice and helpful. There were some really sweet volunteers who tried to ease our worries with cookies and a teddy bear. We were registered and walked back to the waiting area quickly, but then we had a long wait before we got to see the doctor.

After asking a few questions and looking at Brian's chart, he laid out some options for us. The good news is, it looks like they got all or most of the fairly large tumor out. The post op MRI showed some blood on the brain (normal after surgery), so that made it hard to see if all of it was gone, but we will have follow up MRI's every three months going forward.

Our first option is to start chemotherapy and keep radiation in our back pocket. His chemo will be in pill form. He will take that for a year, five days out of each month. Its really expensive for five pills so we are grateful for insurance.

The second option is to do radiation now and keep chemo in our back pocket.

The third option is to do radiation, and then start chemo right after that as kind of a one-two punch.

Brian's tumor is a type of oligodendroglioma. Its a rare brain cancer with only about 1000 diagnoses per year. His tumor included astrocytes, another type of brain cell and from what I understand, only about  2-4% of brain tumors are oligoastrocytomas. The genetic make up of the tumor is very important as well. Some tumors have a genetic abnormality called a co-deletion in which sections of chromosome 1 and 19 are deleted. This is a good thing. People with the 1p19q co-deletion respond much better to chemotherapy. As a matter of fact, there is a new study that was just released early with some very positive results. You can read it here .  Brian has about 43% 1p19q deletion. While this isn't as good as 100%, the doctor assured us that his tumor will still be very chemo sensitive, thus encouraging us to go with option one first.

Why not go with option three and hit it hard? Chemo we can do again and again, but radiation we can only do once. Since his cancer is still stage III and he has the co-deletion we want to save our radiation for when the tumor comes back. It could come back stage III again, or it could be stage IV next time. Either way, we don't want to spend it just yet.

Brian was asking about prognosis yesterday. That is when the doctor pulled up the article. I thought he was saying that the new study showed that some tumors didn't recur for 15 years, but after reading it this morning, I realized that it said study participants survived an average of 15 years with the chemo and radiation treatment.  Patients that treated with radiation alone only survived an average of 7.5 years, and patients without the co-deletion only survived an average of 4.5 years. While I understand that this is groundreaking news, to me the thought of only having Brian with me for 15 more years is absolutely devastating. That isn't long enough. I am trying so hard to be positive. I knew that Brian's cancer was rare and aggressive, but I have heard so many miraculous stories. I have to have hope.

I am just so frustrated about all of this. Its hard not to be overcome at moments with anger. The doctor asked us if we had kids and I said no, we had been trying for a year and a half and I miscarried in October. He just shook his head and told us that we can't have kids while Brian is on chemo because the chemo kills sperm. He gave us all this information about sperm banking like we were just going to put some leftovers in the freezer. He said that was the most rational thing to do because if we had been trying for that long we were on the way to in vitro anyway. I thought that was pretty presumptuous of him.  Brian and I talked about it and I don't think that is actually for us. I just don't know how I feel about all that goes into that ethically, plus its really expensive even if we wanted to.

I hate to end on a negative note. I hate feeling sorry for our situation. It has just been such an overwhelming month. I feel like the whole time we have been married its just been one thing after another and this is the worst so far. Fertility issues seem like a walk in the park compared to this. I know that Heavenly Father has a plan for us, but I don't have the slightest inkling of what that could be at this point. I know that we are here on Earth to gain experience and be tested, but this seems like almost too much for me to bear right now.

 All of that being said, this isn't a crisis of faith for me. Our faith is sustaining me, and I have already been able to endure so much because of it.  I am thankful for each and every decision I ever made leading me up to this point. I am grateful for our family and all of our many friends. More than anything else, I am thankful for my sweet husband and the love he shows me every single day. I am inspired by his strength and refusal to despair. I am so lucky to be the one to share life and everything that comes after with him. And I cling to the promise that we will be together always.

Sunday, March 4, 2012

A LONG post, but a lot happened this week!

I come from a long line of worry warts. I remember fondly when my Gram was alive, there were several occasions where she would ask, "now, what was I worried about? I know I was worried about something, but I can't remember." I would laugh and tell her that if she couldn't even remember, then it probably wasn't worth worrying about in the first place.
I feel sort of like that. And I have been trying to take my own advice. Brian feels so good right now and has recovered so well from surgery, that its hard for me to remember sometimes what we are facing. I am so thankful for his continued improvement and this respite he has before the commencement of treatment. Its good for our souls.

As difficult as this trial seems, I know that we must find, and cling to, those moments of grace that I know are there for us to take advantage of. This week, that was easy.

We have still been receiving cards in the mail and we look forward to them each day. This week we also received two packages! One was from an old Virginia Beach friend of Brian's. Adrianne and Jared Blake sent us two boxes of dipped fruit from edible arrangements. YUM! She sent strawberries and bananas which we could barely wait to try. Delish and a fun and unexpected dessert.

Brian's Grandma and Grandpa Johnson also sent us a box. They included some really good New Mexico Salsa, and some fun T-shirts. One is from Roswell and has an alien on it. Its Brian's size, but I already stole it ;) And then they sent each of us a T-shirt form our favorite restaurant to visit out there called La Posta. If you are ever in Mesilla, outside of Las Cruces, I can highly recommend La Posta.

On Wednesday, Brian's big surprise came. He has been eyeing digital pianos for months now. He has wanted a piano for years, ever since his Kermit the Frog keyboard when he was six. He never took lessons, but he can just amazingly play by ear. I'm always impressed, but of course he downplays everything and says its easy. When all of this happened, my mom and dad decided to get one for him! I originally said no way because I know Brian is not good at gift receiving. He is, and always has been a giver and fixer, not an asker or a taker so its difficult for him. But if you know my mom, then you will know that me telling her not to do this was like me telling her to go kick a puppy. It just isn't happening. She insisted that when we were looking at houses a couple of months ago, she decided to get us one as a housewarming gift, and now since our house hunt is indefinitely on hold and Brian has LOADS of time on his hands, she decided to give it to him to help combat the boredom he is dealing with.

I told him it was coming on Tuesday night so he could get over the gift-receivers remorse that he most definitely felt. By the time it came Wednesday, he was pretty excited. He plays so well still even though he thinks he is terribly out of practice. He enjoys it so much and I am so grateful to my mom and dad for doing this for us. I know that he will continue to get enjoyment out of it in the challenging days and months ahead.

Thursday, we decided to make a spontaneous trip to Chicago. The Field Museum was having a free day and Brian wanted to get out of the house. I did the driving since Brian can't yet, and that was an adventure in and of itself. Brian said I did well, but I am a nervous driver. I don't know how you can be calm in that traffic. We also splurged on dinner and ate at Fogo de Chao which Brian and I affectionately call, Meat Heaven. Its a churrascaria which is a Brazilian steakhouse. We wanted to try it since we went to Texas de Brazil last time. They were very similar, but Fogo de Chao has Guarana Antarctica, which Brian insists is the better brand of his favorite Brazilian soda, so that tipped the scale as far as he was concerned. I wanted to get pictures there, but our lust for protein over took us so much that I forgot!

Friday I had school, but Saturday we met up with my family and ate at Famous Daves and then saw This Means War. It was cute and it was good to get out of the house. We had a blast with my fam, and then they came over to see Jack and Brian's piano.

Brian sweetly said the highlight of his week was the oatmeal bread I made for him. I just find it comical that most of the joys in our life and our marriage revolve around the food we share. I don't know if that's good or bad.

Anyway, like usual, I didn't take enough pictures in Chicago, but here are a few of the highlights from our week. I didn't get one of the piano yet, but I want a good one of Brian with it before I post.

This week, we see the oncologist on Friday. I am nervous, but really ready to get some more information.

Thank you for reading, and for your continued love and prayers.

Jack helping me study. He has really been my buddy.

Brian and I at the dinosaur exhibit at the museum. Our favorite of course!

Me with a Parasaurolophus.

Brian's card table!

Jack being a baby.

Brian and I about to disrespect some fried fish!

Me with my sister who keeps me well stocked with Cadbury eggs and Chewy Spree in times of need!