"Streams within the Desert"

January 22nd- "He withdrew... to a solitary place. (Matthew 14:13)
      There is no music during a musical rest, but the rest is part of the making of the music. In the melody of our life, the music is separated here and there by rests. During those rests, we foolishly believe we have come to the end of the song. God sends us times of forced leisure by allowing sickness, disappointed plans, and frustrated efforts. He brings a sudden pause in the choral hymn of our lives, and we lament that our voices must be silent. We grieve that our part is missing in the music that continually rises to the ear our Creator. Yet how does a musician read the rest? He counts the break with unwaivering precision and plays his next note with confidence, as if no pause were ever there.
     God does not write the music of our lives without a plan. Our part is to learn the tune and not be discouraged by the rests. They are not to be slurred over or omitted, nor used to destroy the melody or to change the key. If we will only look up, God Himself will count the time for us. With our eyes on Him, our next note will be full and clear. If we sorrowfully say to ourselves, "There is no music in a rest," let us not forget that the rest is part of the making of the music. The process is often slow and painful in this life, yet how patiently God works to teach us! And how long He waits for us to learn the lesson! John Ruskin

     Called aside--
From the glad working of your busy life,
From the world's ceaseless stir of care and strife,
Into the shade and stillness by your Heavenly Guide
For a brief time you have been called aside.


This is all from a daily devotional, "Streams in the Desert," written by L.B. Cowman. One of my nursing classmates from Washburn, gave the daily devotional to me last Friday when I went to visit friends and professors there at the University. The passage from Jan. 22nd, was the first one that I read; and boy does it just describe very accurately this Spring semester of 2012, for me. I'm sure there are definitely people reading it who aren't in the same situation, but would like to be in a different part of life who will hopefully find comfort in the above passage like I did.

It has been soo great being back in Manhattan, living with my mom, and getting to see family and friends on a weekly basis. Human Body has been so great, going to my home church of Faith E Free has been great as well; surrounded by fellowship. I know most everyone says that they are grateful for their family and friends... But I can't say it enough how wonderful it is to be blessed with such an amazing family, extended family, and my friends who I feel so blessed by! (Partly because they love me, despite how crazy&goofy I can be). For example, last night I was playing with my stethoscope, talking to myself by putting the bell of the stethoscope on my throat to listen to myself talk-- I then took it downstairs and had my mom listen to my throat as I was talking... it was just funny how it sounds.

I called Mayo the other day to see if they had made the appointments yet for the next followup MRI-- they usually mail out your appointment schedule, but I'm not very patient with these things. They said it was for April 19th. Which sort of surprised me because we've been told that the 1st followup MRI could be as soon as from 4-6 weeks after tx, 2 months, or possibly 3 months at the latest. It's just so frustrating to me & the very fact of talking with Mayo the other day and hearing that it wouldn't be until April 19th-- just stirs up tons of thoughts and emotions of hating the unknown and the "three month" period of time of wait&see. I want to know the results of radiation on the tumor, but unfortunately I can't have the answers now; there's no way to see the future. I want to know now the results in order to plan for school and work etc.

I guess I just feel hesitant/scared to commit to anything set in stone such as work/school as it still feels to me based upon what the doctors have said about this type of tumor, PXA, that we do not know how effective radiation is on this type tumor based upon how rare it is. I've been told by my oncologist, that it's possible for certain cells extending from the tumor to be resistant to radiation; therefore making radiation ineffective and another surgery neccessary. The hope is a total knock out of the tumor cells, and second best is stunting its' growth. I once asked the doctor, how would we be able to differentiate between the TKO and stunting its' growth and how soon could we know-- her response was in 50 years when you are sitting with your grandkids-- we will know that the radiation was successful. I'm sorry if this too much information, I was definitely holding off on being this open about the tumor and debating if I should even give what the doctors have told me about PXA's and radiation; but I feel like it helps explain, not justify, why I feel the way I do right now.

In the future, after we know more after the 1st & 2nd MRI's, I want to get to the point of not being dependent on receiving results to dictate what I do in life. I think that's why I appreciate the above devotional. All I can do right now is keep going with the things that I know are good for me in order that my "next note will be full and clear."

The doctor's words describing the tumor/radiation are what I get hung up on. Hopefully 'this too shall pass' especially after what they have said in the past that has been so contradictory; things that I used to be hung up on. Dr. Lachance once said that the first place the tumor could spread would be the thyroid, he then ordered an ultrasound of my neck. One was performed and it was shown to be okay and not worriesome. I then asked the endocrinologist if we should do any monitoring of my thyroid, he responded by saying that there was no chance of it spreading to my thryoid. The second instance where doctor's words have been the complete opposite actually comes from the same doctor, Dr. Yan. When we first found out about the tumor's growth in the beginning of November of last yr, she was trying to calm me down and say it would be 'okay' to wait until the end of the Fall Semester to start tx, she said that 'these are early subtle changes' in regards to the tumor. Two weeks later after she was made aware that I had withdrawn from school; she called me while I was in KS and while she was planning treatment, and asked if it was okay to treat the tumor and area surrounding the tumore more aggressively, therefore harming more normal brain tissue than previously discussed. In that phone conversation she said that the tumor was 'changing quickly.'

 It has just been so frustrating hearing these things, as this is my life and health. These examples along with others, I guess make me almost bitter; but it just proves that doctors are humans; and that God and His Word (and our Souls) are the only things that are eternal, everlasting, and always true (even though there's always going to be debate over what He means by some of the things written in the bible). Our souls, along with God's Word and the Holy Trinity of the Holy Spirit, Jesus, and the Father are the only things that are eternal! The one verse that I love is John 16:33,"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." God has 'removed our sins as far the east if from the west' (Ps 103:12), our sinful nature being the thing that would condemn us to hell, God made a way through Jesus dying on the cross paying the price for our sins, overcoming the world, in order that we may be 'made new' (2nd Cor 5:17) here on earth and be promised eternal life. And you can take that to the bank (:

Done!!!!!!!!!!!!!!!!!!!!!!!!!!

Time has gone by so quickly… For Christmas, my dad & I drove back to KS and got to spend it with my mom and brother. It was wonderful to see them. It was also very special, as Joe had one week left before leaving for the United States Marine Corps. Which he did on Jan. 2nd around 7pm!! Now he’s at Basic Training- he’ll be there for the next 13 weeks! And will graduate in the beginning of April!

On another note… There have been some very neat people that I’ve met here at the Lodge. One of them being Sandy. My friends met her while they were here, before I even did. And from that point she wanted to be friends with me. She’s already gone through surgery and chemo to treat breast cancer; and is now finishing up with radiation. She is so upbeat & outgoing! It makes a huge difference to have those kind of people around! We baked and decorated xmas cookies & we also had treatment at the same time each day.

Since coming back from KS, the daily routine for me has changed a lot just in the times of waking, eating, etc. When I say that, I mean to say; I’ve definitely been sleeping in & more naps! This means later dinners, sometimes as late as 8:30pm. Haha! I say this to introduce you to two really neat sisters who always were in the kitchen eating around that time! They’re from Germany. The sister who is here to take care of the other, actually still lives in Berlin and is just here to help her sister as she goes through treatments. She says that Berlin is a very ‘rough’ place to live comparing it to the US where we all greet each other with hello and how are you. The other night she did the funniest thing! She was playing with garbage disposal, just turning it on as she liked the noise it made. She did this several times saying they weren’t too common in Germany. She also wanted to name the garbage disposal. Her sister came up and said, “Here, it works better with water running.” But she was not receptive to the advice at all, haha, so here she was with no water running; just turning the disposal on & off just for heck of it. Haha- it was just funnier since I’ve gotten to know them and their senses of humor. The lady who is here for treatment, has twice handed me a penny that she’s found randomly on the sidewalks; saying it’s good luck if you find the penny and then hand it off.

I am definitely thankful that this time at Mayo has not seemed to have been drawn out. There are many people here at the Hope Lodge, who are going through a lot of uncomfortable side effects associated with chemo and depending on where their radiation is being delivered (for example-this one man has throat cancer, so radiation to that area of the body makes it sooo hard to swallow!). When I was talking to one of the German sisters, she said to me: “You have good luck with in your bad luck.” She was saying, yes even though it’s not the most ideal situation to have a brain tumor, but at least it is not affecting motor skills and speech etc. This is so true! At least the ways in which the tumor has affected me are not in ways that interfere with daily functions of walking, listening, vision, or speech; it’s not like I will need to be on disability. So yes there is definitely some good luck within the bad luck; but it doesn’t negate that this has and will change life in the future in ways. I guess this is where the saying, “Just take it one day at a time” definitely comes in. Those sayings along with others can be hard to hear, just as I want to know how everything will be in the future. “Live each moment to the fullest,” “Day by day- take it as it comes.” There’s even a Bible verse that states, “Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matt. 6:34

I feel like I have been able to ‘live in the moment’ a little bit more- in trying to follow the advice of the above listed sayings. It’s just hard to not think/worry about tomorrow and want to plan. To be honest it’s just harder not having the feeling of security that it will all pay off; when in this part of life at my age where it seems that everything you do in the here and now can and will have an impact on the future. I just got very caught up in trying to be really productive throughout this past summer and fall semester in regards to trying to move ahead in the field of nursing; to the point of being counterproductive at points in time. There’s definitely a balance to be found in working towards the future, but then enjoying the here and now. One of my friends said it like this: Life is a journey, not a destination. The thought has crossed my mind in the past, “Okay- once this happens in life, then it will be better,” once I graduate from college, once I am on my own, once I am a nurse, once I meet my man then life will be set, etc. Yes these are major landmarks in life, but it’s important to enjoy the process! I guess after my surgery, I almost felt like I had to be productive every moment; as I felt lucky to be able to do so after my surgery.

One thing that has helped a bit with enjoying the here & now, is Mindfulness Meditation. One of the Mayo staff recommended it to me. I’ve gone to it a few times, as Mayo offers it every Wednesday evening. It’s just where you focus on what you are feeling in that very moment, the sensations of your body as you are sitting, focusing on your feet touching the ground, and moving up to your breathing and your thoughts as they come and go. Acknowledging your thoughts, not judging them and saying that you will think about that later; and then redirecting your focus to your breathing. I think I liked it the best when the guy who led it, said to picture the waves on a beach coming up onto the shoreline and then back into the ocean; in comparing that to our breathing. Another way of doing mindfulness meditation, is sitting there peacefully, eyes closed, taking deep breathes in & out; thinking of a loved one & ‘sending’ warm kind thoughts to that person. And then you redirect those thoughts toward yourself. That one was a bit different for me; so I later changed it to using a bible verse and saying it to myself like 2^nd Cor 5:17-19.

I lost a nice chunk of hair on the left side of my head & now hair on the on the right side of my head is starting to thin out a bit r/t the radiation. Blasted cucumbers! Oh well, it shall grow back (:

I haven’t been faithful to my nursing studies since like week 2 or so of being up here… Ughh! But I spoke with my Human Body instructor from KSU, and I’ll be able to audit this class this Spring of 2012! She also said that I could go to the peer tutor groups that meet once a week. I’m soo excited, as this class is amazing to say the least. Hopefully it will work out to audit some of the Spanish classes that I’ve already taken at KSU as well.

Lastly—yesterday I got to ring the bell, as we finished up treatment!!!!!!!! Woo hoo! I was supposed to have had my last treatment on Monday, the 9^th, verses this past Friday. But my doctor, said we could do two tx’s in one day as long as they were 6 hours apart. My first one was at 8:15 am, (Sandy had her treatment at 8:30 as it was Friday and she get's to go home each weekend, so she schedules Friday tx's earlier), so after her tx, we posed by the bell together; as she wasn’t going to be able to come see me ring it at 2:30 in the afternoon. She’ll be done with treatment on Jan. 10^th!! 

So in 4-6 weeks or possibly in 2 months, I’ll come back to Mayo for a follow up MRI to see how the tumor responded to the radiation, as my oncologist put it.They'll be mailing me the wonderful appointment schedule soon. Oh joy (:

Thank you for reading! And thank you for your prayers! The love & support of family and friends and fellowship with God and others; as well as so much more has made such a difference! And last but not least my dad being up here with me; supporting me, giving me space- cooking & setting a wonderful example in gym time, encouraging talks, and going into treatment with each day and helping them get me set up on the table for radiation & lots more.

P.S. I get to take home the mask used each day for tx, haha! It's gonna be a sweet Halloween costume for next year!!