Moving forward: I'm currently enrolled in Spanish classes for the Fall semester & will graduate in May 2013 from Kansas State University. I'll be starting an intercession Spanish class next week as well. I've decided to put pursuing my Nursing degree on hold for the time being & pursue my degree in Spanish at KSU as I only have 15 hours left, as well as a semester abroad in Chile under my belt practicing and speaking spanish. I've loaded my iPod up with Funky & Juanes -- 2 of my favorite Spanish musicians. Wooo! I hope this will help warm up my ears to quick spanish speakers. I've applied for 2 CNA positions at the hospital in Manhattan.
Joys: Living with my mom has been wonderful, she is a very hard worker. Working 7 days a week, almost every week. She is a big encouragement to me everyday! Not only is it great living with my mom in Manhattan, but Manhappenin' also offers me some of my closest friends. I'm realizing that my tumor, b/c it's in my brain doesn't cause me any pain (which this allows me to live life outside of the house, outside of pain meds) - whereas one of my friends from the Hope Lodge has experienced the worst pain from her metastatic cancer. She got a spinal block today - she's been in pain for 6 months and hasn't been able to get out of the house. She went to the Cancer Treatment Center of America down in Tx - and has been given new hope. Pray for Darlene. She's only 29. She'll have a surgery on May 31st.
MRI results from April 20: I'm going to share with you what I've recently received in the mail from Mayo Clinic as my Doctor's sent me their clinical documents & impressions. I hope it will give more context as to what I'll share later in this blog post.
"IMPRESSION/REPORT/PLAN (Dr. Lachance - Neurologist)
Updated MRI scan was reviewed and compared to previous studies. There is clearly some progression of enhancement in the region previously noted to be enhancing. There may be a slight increase in T2 signal abnormality in this region as well. At the periphery of the lesion, the area of T2 signal abnormality is unchanged, and there is no new mass. It is noteworthy that this current scan is being compared to her October 31 pre-radiation baseline.
Impression: While it is disappointing that there has been further change in the MRI scan and while it has been three months since the completion of radiotherapy, I hesitate to call the findings on this current scan a progression despite radiotherapy. I prefer to use this current scan as her baseline for further comparison to determine the benefits or potential lack thereof of radiotherapy.
Should future scans demonstrate progression, our plan would be to consider a more aggressive surgical resection as opposed to any attempted chemotherapy. I will prearrange for her to see Dr. Marsh (Neurosurgeon) and Dr. Yan (Radiation Oncologist) after her next MRI scan (in July).
The following is what Dr. Yan wrote in her Impression:
I reviewed yesterday's MRI scan with Ms Mooney and her family. Unfortunately, the T2 weighted changes are somewhat concerning for persistent, possibly progressive disease. The region in question would have received a minimum of 5400 cGy during her recent treatment. Additional radiation is not indicated right now. She will meet with Dr. Lachance later today to discuss her options at this time."
My thoughts: None of this was too shocking to me, but it just makes me think that a surgery sometime with in the next 2 years is inevitable. The big question that I hope will be answered is just knowing the effectiveness of radiotherapy (radiation) on the tumor, especially after Dr. Yan has told me in the past that this type of tumor, PXA- with secondary infiltrative component WHO II, can be resistant to radiation therefore making radiation ineffective as a treatment. She's also said that increasing the dose of radiation is not helpful in stopping the tumor. All of this just gives me a gut feeling that the surgery could be needed as early as this July. This is something that I have mixed feelings about - yes I want it out or what they are able to ressect, but the risks of the surgery will be higher. I came out just fine after the first, but the fact that this tumor is "encasing a large portion of the middle cerebral artery" -according to Dr. Marsh in his impression... I would just pray that I could be fortunate enough for no noticable physical or mental changes r/t an aggressive ressection. With all of that said, I am trying hard to not let this 'interrupt' life and drive me nuts as I want to get on with life so badly and be the 'go getter'. I'm very grateful that I can fall back on Spanish and do so in Manhattan.
What is God doing? What is His plan? Will He perform a miracle and take this tumor away? Why should I pray? Is God letting this happen or is this just part of the natural suffering that happens in life? These are all questions that have been coming up, back and forth this year. Don't get me wrong, I believe our God is a good God & I know He knows everything & has all power & loves us beyond our understanding. God has blessed us with His son, Jesus, stripping away our sins by dying on the cross and therefore reconciling us to Himself, the Father. I don't how God is working in my life in regards to this tumor. Does he give people cancer or does it just happen? I think it could be possible that cancer is not God's plan; but that it is possible for anyone to experience cancer along with anything else as we are in this sinful world of free will. God created Adam & Eve, and what happened? They sinned. Maybe it is sin that opens up the door for anything to happen to anyone. Maybe it's not God's plan for people to be hurt by sin. But it is inevitable for people to be hurt as there are people who kill, who abuse, who rape, who torture others - all for what? I do not think it is in God's plan for such things to happen to anyone. But why do they happen? Because of out of control people who don't have self control and aren't grounded and overtaken by sin. Why does cancer happen? Why do earthquakes happen? Is it just that this world and our bodies are out of control and sh*t happens? I truly believe that our Father has created each and everyone of us with amazing and different talents/gifts. I believe that it is His plan that we abide by His word and allow the Holy Spirit guide us. I just don't know how detailed God's plans get when it comes to everyday life and our health. I just know that in the big picture, His plans are for people to be reconciled back to Him and to eachother forgiving one another as they have been forgiven. "So from now on we regard no one from a worldly point of view. Though we once regarded Christ in this way, we do so no longer. Therefore, if anyone is in Christ, he is a new creation; the old has gone, the new has come! All this is from God, who reconciled us to himself through Christ and gave us the ministry of reconciliation: that God was reconciling the world to himself in Christ, not counting men's sins against them. And he has committed to us the message of reconciliation... We implore to you on Christ behalf: Be reconciled to God." 2nd Cor 5:16-20
To tackle the question of Why pray? With the help of the kindness of a couple from my church, Lowell (the author) & Robynn Bliss - I've seen that we should pray in the face of our life and our daily suffering because that is what Jesus did. Lowell wrote a book, Gethsemane: Lessons on Suffering from Christ in the Garden. They hand bound this book, prayed for me during that long process, and gave it to me earlier this year at church. (I think that this is just an example of the many ways that God's plan can manifest itself in real life: people using what they are good at to truly encourage others to grow closer to the Lord). This book gives much reference to what Jesus went through in his prayer to His Father before he was arrested the night before he was crucified. " 'Father, if you are willing, take this cup from me; yet not my will, but yours be done.' An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground." Luke 22: 42-44. It was obviously the will of God was for His son to die, in order to remove our sins and give those who accept this amazing will of God for what He wants to give us: eternal life, that starts here on earth once we admit we are innately sinful and need a Savior. So just as Jesus suffered and God's will came of it, I definitely think that human suffering in stinky circumstances can offer the chance for God's will to be done. "Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that testing of your faith develops perseverance." James 1:2-3. How are you suffering right now? How could God turn it around?
So now that I've 'talked the talk', pray that I would 'walk the walk' and carry out the Lord's will: Growing closer to Him, using my mind to absorb Spanish to become an interpreter, and to be more open with others in showing them God's love. That my faith would grow & worry would subside. For my parents, Dave & Beth, as this is so hard for them hearing and reading what the doctor's have said & the things that I say in honesty to them. Pray that my mother would be relieved of the stress that is hanging over her head as things are rough for her in general in her life. & for this tumor to go away!
Wednesday, May 9, 2012
Wednesday, January 25, 2012
"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 (:
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 (:
Saturday, January 7, 2012
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 2nd 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 9th, 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. 10th!!
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!!
Wednesday, December 21, 2011
a great time with friends...
Last Wednesday; Sara, Elizabeth, Laurie & Rachel came to visit. They left early Sunday morning. I've known them all for over four years now; as we went to bible study together, went to Nav's, and have lived in the dorms together through out college at ksu. It was wonderful to see them & spend time with them!! I'll just go through and list some highlights:
Wed: They arrived!!! We got to run to each other as we saw each other from a distance and have a big group hug. They came to the Lodge that evening & got to eat dinner there.
Thurs: We had "Christmas morning" of opening up gifts, followed by Christmas lunch. One of their gifts to me was a scrap book filled with pictures from freshman year til present. They got to come to Desk R with me, and also got to see a man ring the bell since it was the last day of tx. Before doing so, cheerful music was played and he danced with one of the secretaries, before he rang the bell. That was new! Since my dad comes in with me back to the radiation treatment room everyday and helps them get me situated on the tx table; my friends also got to come back to the area and see how it works. My dad describes it as something from Star Wars. They got a tour of Mayo. I stayed with them every night at the Days Inn. It was so nice that they were so close to the Mayo. It was so much fun, to say the least, except for the crows hah!!!
Frid: Morning we took pictures around the downtown area. Tx. Later in the evening, we got dressed up and went to Chester's for dinner. Then we went ice skating later that evening. Later that night, Alyssa called us from Japan; knowing that we were all together. She's a missionary in Sapporo- she's currently in language school and will then start at one of the Universities, she was/is our bible study leader and friend through out college. So it was great to talk with her!!!
Sat: Mall of America, and to the surprise of Elizabeth, Laurie & Rachel (the one's who like to shop), Sara & I bought some stuff hah! It was a long but fun day, finished by going to IKEA. We took a picture with Santa!
Whenever we were at the Lodge & we'd run into people here that I know; I'd of course introduce them to my friends... And their responses were: You have friends?? What?
It feels like I'm leaving a lot out in talking about how the visit went; but it was an extremely refreshing time of friends & fellowship!! I am SOO thankful that they were able to come up & that all went well and had safe travels! Words can't describe how thankful I am for that time with them. One thing that I didn't really expect, was having individual set apart time. The first night they were here, they brought up the idea of having an hour alone spending that time reading a book and/or the bible and journaling each day. At first, my response was indifference; but it proved so helpful!! We then listened to worship music for half an hour after each hour set apart with God.
One thing that is very helpful, but at some times in ways can be depressing, is living at the Lodge through out this time; as everyone is going through some type of treatment. For me one of the hardest parts is the wait & see part, that will come after treatment is over & before the next followup mri.
So far lifting has gone well, but there have definitely been a few days where I was too tired to go. Last night I got to go to the boxing gym after working out, where my dad has been going. It was pretty cool, most attractive men seen so far in this city of Rochester!! (: Also got to get up in the boxing ring and throw a few punches, haha.
Wed: They arrived!!! We got to run to each other as we saw each other from a distance and have a big group hug. They came to the Lodge that evening & got to eat dinner there.
Thurs: We had "Christmas morning" of opening up gifts, followed by Christmas lunch. One of their gifts to me was a scrap book filled with pictures from freshman year til present. They got to come to Desk R with me, and also got to see a man ring the bell since it was the last day of tx. Before doing so, cheerful music was played and he danced with one of the secretaries, before he rang the bell. That was new! Since my dad comes in with me back to the radiation treatment room everyday and helps them get me situated on the tx table; my friends also got to come back to the area and see how it works. My dad describes it as something from Star Wars. They got a tour of Mayo. I stayed with them every night at the Days Inn. It was so nice that they were so close to the Mayo. It was so much fun, to say the least, except for the crows hah!!!
Frid: Morning we took pictures around the downtown area. Tx. Later in the evening, we got dressed up and went to Chester's for dinner. Then we went ice skating later that evening. Later that night, Alyssa called us from Japan; knowing that we were all together. She's a missionary in Sapporo- she's currently in language school and will then start at one of the Universities, she was/is our bible study leader and friend through out college. So it was great to talk with her!!!
Sat: Mall of America, and to the surprise of Elizabeth, Laurie & Rachel (the one's who like to shop), Sara & I bought some stuff hah! It was a long but fun day, finished by going to IKEA. We took a picture with Santa!
Whenever we were at the Lodge & we'd run into people here that I know; I'd of course introduce them to my friends... And their responses were: You have friends?? What?
It feels like I'm leaving a lot out in talking about how the visit went; but it was an extremely refreshing time of friends & fellowship!! I am SOO thankful that they were able to come up & that all went well and had safe travels! Words can't describe how thankful I am for that time with them. One thing that I didn't really expect, was having individual set apart time. The first night they were here, they brought up the idea of having an hour alone spending that time reading a book and/or the bible and journaling each day. At first, my response was indifference; but it proved so helpful!! We then listened to worship music for half an hour after each hour set apart with God.
One thing that is very helpful, but at some times in ways can be depressing, is living at the Lodge through out this time; as everyone is going through some type of treatment. For me one of the hardest parts is the wait & see part, that will come after treatment is over & before the next followup mri.
So far lifting has gone well, but there have definitely been a few days where I was too tired to go. Last night I got to go to the boxing gym after working out, where my dad has been going. It was pretty cool, most attractive men seen so far in this city of Rochester!! (: Also got to get up in the boxing ring and throw a few punches, haha.
Tuesday, December 13, 2011
just a good day...
--Seeing a wonderful woman, named Pat, being surrounded by people from the Lodge in the waiting room today, ringing the bell as she had completed her tx today! Her husband Phil has just been awesome to watch; reaching out to other people. Pat and Phil have gone to the Finding Hope meetings.
--Meeting another great couple, I always run into them in the morning time at breakfast. The husband has his treatment everyday before me; so I always see them both; we nod and wave. The wife is so sweet, she's told me of how she puts yogurt and Orange juice in her cereal, in place of milk. Her husband is so calm & has a wonderful demeanor. He actually had a brain tumor as well. He is a picture perfect santa with his white beard & hair. Seriously(: After talking with his wife more, she gave some of the words of her husband: "Life is just hard on people." I'm finding this to be true, life is just hard; and it's just life, it won't be perfect & it's okay.
--The snow has been melting.
--I just talked with another older couple. Their daughter, when she was 19 had a cancerous brain tumor, it was removed, and then she had radiation. She was in pre-med school and had to withdraw. She was given a 10 year prognosis, told that she wouldn't be able to conceive children. This lady, is now 40+, has three kids and is a advanced highschool physics teacher. It was good to hear of this story, as it's just hard to think about future plans. It's like in this process of what happened between Aug & Oct, taking one step forward, and then 2 steps back.
--I got to do some Christmas shopping at some of the local shops in the downtown area (my friends will be here tomorrow!!!!). As I was coming back to the Lodge, it was getting darker outside, I look up and see all of these crows!!! It was beautiful, there were a ton of them; the contrast between the dark sky and the black birds was beautiful. Then later in the evening before dinner, my dad and I went to the grocery store. As we were walking out side, all of the crows were covering the roof of the lodge; there were a lot of them just flying in the air as well. I could hear some splattering on the ground of them pooping. It was also visible on a ton of people's cars. So here, my dad and I were looking for the car, I'm just yelling "oh no", we end up finding the car and going to the store. When we got back, one of the ladies said to me that she could hear me from her room! It was just funny, these darn crows!
--Receiving mail/gifts from family and friends has been wonderful! Thank you!
On a side note: fatigue has set in this week a bit this week, which has made it harder to get to the gym & studying has been very off & on, not as consistent.
--Meeting another great couple, I always run into them in the morning time at breakfast. The husband has his treatment everyday before me; so I always see them both; we nod and wave. The wife is so sweet, she's told me of how she puts yogurt and Orange juice in her cereal, in place of milk. Her husband is so calm & has a wonderful demeanor. He actually had a brain tumor as well. He is a picture perfect santa with his white beard & hair. Seriously(: After talking with his wife more, she gave some of the words of her husband: "Life is just hard on people." I'm finding this to be true, life is just hard; and it's just life, it won't be perfect & it's okay.
--The snow has been melting.
--I just talked with another older couple. Their daughter, when she was 19 had a cancerous brain tumor, it was removed, and then she had radiation. She was in pre-med school and had to withdraw. She was given a 10 year prognosis, told that she wouldn't be able to conceive children. This lady, is now 40+, has three kids and is a advanced highschool physics teacher. It was good to hear of this story, as it's just hard to think about future plans. It's like in this process of what happened between Aug & Oct, taking one step forward, and then 2 steps back.
--I got to do some Christmas shopping at some of the local shops in the downtown area (my friends will be here tomorrow!!!!). As I was coming back to the Lodge, it was getting darker outside, I look up and see all of these crows!!! It was beautiful, there were a ton of them; the contrast between the dark sky and the black birds was beautiful. Then later in the evening before dinner, my dad and I went to the grocery store. As we were walking out side, all of the crows were covering the roof of the lodge; there were a lot of them just flying in the air as well. I could hear some splattering on the ground of them pooping. It was also visible on a ton of people's cars. So here, my dad and I were looking for the car, I'm just yelling "oh no", we end up finding the car and going to the store. When we got back, one of the ladies said to me that she could hear me from her room! It was just funny, these darn crows!
--Receiving mail/gifts from family and friends has been wonderful! Thank you!
On a side note: fatigue has set in this week a bit this week, which has made it harder to get to the gym & studying has been very off & on, not as consistent.
Monday, December 12, 2011
15 down... almost half way!
This past week:
My dad and I have gone to the Finding Hope meetings, they’re held twice a week. They've been very helpful. After the 1st meeting on Monday, last week; it was the first time that I prayed with more faith that God can work in these ways; as far as the radiation treatment goes and its' effectiveness on the tumor. It is very easy to see how God has answered prayers of life, sub-leasers & lodging. But it has been a lot harder to just pray to Him asking Him to make radiation completely effective. It just seems harder to see how He can answer prayers in relation to this subject of health.
But like I said, after this meeting on Monday, I can see more of how He answers medical prayers. This came from hearing people from the meeting saying things like "It is because of God that their loved one's cancer is gone..." "God did this..." "God did that..." At first it just sounds almost weird to hear people saying things like that, to me at least when it comes to health stuff. But I think it's when it's in a personal way, when you feel like the pending outcome is not in your favor or the desired outcome is not possible like in the cases of some of the people at the Finding Hope meetings; then once the prayer is answered, you are sold on God and how He can answer. The two times, where I've just had the feeling of finally being sold on how God can answer in personal ways, was in the case of the sub-leaser & in the case of how smoothly lodging went back in November in getting into the Naz house & quickly followed by the HL. But to be 100% honest, I still have doubts when it comes to medical stuff; but I think it’s okay since we are only human.
"It's very humbling to be on the receiving end of prayer" & "Enjoy life as it is," were two quotes that stood out to me.
At the second meeting of week, we sang Christmas Carols. After this meeting, I walked out into the entry area of HL, where there's a greeting desk & offices. From one of the offices someone was playing the song by Hillsong, From the Inside out (Everlasting). She was playing it loud enough that it could be heard from the hallway. It was so good to hear this song!
During radiation treatment, they play soothing music & there's a flat screen tv above that plays nature images on it. The people who go into get me set up for treatment, mentioned that I could bring my own music in to listen to during tx. At first I thought, oh I could bring music like that song Everlasting & listen to that; but then they also said "Or maybe not," just because you will be reminded of treatment, every time you hear the song in the future. Haha, I don't think I want that. It's not too bad or anything, receiving treatment. There are about 7 different times that they shoot the radiation. The machine makes a noise every time. During some of the administrations of radiation, I get a metallic taste in my mouth, but that's normal. The doctor compared the type of radiation that I am receiving, Intensity Modulated Radiation Therapy, to if you were to take a lot of flashlights and direct them at a deer that was out in the middle of the road at night time; just how lit up and visible the deer would be under so many lights.
The second new thing, I've lost a patch of hair in front of and above my left ear where the radiation waves are going in, on the left side of my head. I just have to put Vasiline on the area. It's not a big deal as this is where Dr. Marsh, the neurosurgeon, gave me a bad haircut. (:
The third new thing has just been in learning more about Mayo itself and what's coming. There's a mini museum on the first floor of the Mayo/Gonda building. There they have a replica of a heart-lung bypass machine that was used in 1955, to perform Mayo's first open heart surgery to repair the wall of the heart that separates the left and right ventricles, chambers that pumps blood to the body & lungs. This was a cutting edge surgery at the time that it was performed, now a procedure that is performed all of the time across America. It has been so interesting to hear about some of the treatments/transplants that some of the people here at the HL are receiving. This one person will be the 10th person at the Mayo to receive stem cell transplant from the cells found within an umbilical cord to treat Leukemia. My dad has said a few times after seeing the heart-lung bypass machine today and after hearing about some of the newer therapies coming to Mayo: What a time to be alive, with all of that is available (medically speaking)! It is so cool to see the new advances in medicine and treatment being made here; and seeing the necessity for medical facilities like Mayo and other places to keep raising the bar, that way in 10, 20, 30 years what was once something new and only at certain facilities will be offered across the country anywhere. There is a new building being built near mayo, they're really just breaking ground; but by 2015 at the latest, it will be a new radiation treatment facility that offers Proton Radiation. With conventional & IMRT radiation, there are both entry rays and exit rays; meaning that it goes through one side and comes out the other side. With Proton Radiation, they can pin-point the depth that the radiation is needed within the body, therefore eliminating exit rays of radiation. I asked more about IMRT with the Certified Nurse Practitioner, although yes, I do have exit rays of radiation; with IMRT; it is like waves of radiation that are going in, where the dose of it is increased in the area of the brain where the tumor is located; therefore the dose can also be modified and lessened in the areas of lesser concern. So I guess the name of ‘intensity modulated' makes perfect sense.
The fourth new thing: I have a legit brain buddy now!! I've met a young couple from South Asia. The wife, who is closer to my age had a brain tumor mostly removed and is now receiving the same type of radiation. The funny thing is she has Dr. Yan as a radiation oncologist, AND that Dr. Yan's husband is a neurosurgeon here at Mayo who operated on the gal that I just met. CRAZINESS! Of course doctors don't always change their name, but Dr. Yan's husband is Dr. Parney. What a match, an oncologist with a neurosurgeon! I wonder what they talk about at the dinner table?! But it has just been nice to have met someone who is going through a lot of the same medical stuff, someone to be able to relate with.
Once again, last but not least: My dad and I will be driving back to KS for a short visit for Christmas!!! I will get to see my mom and brother & family!! Joe will be leaving for the Marines very soon, so it will be great to see him!! I was talking on the phone with Joe, he was like: I just mowed the lawn! It was just funny because back in PA at this time of year, he'd be shoveling snow.
My dad and I have gone to the Finding Hope meetings, they’re held twice a week. They've been very helpful. After the 1st meeting on Monday, last week; it was the first time that I prayed with more faith that God can work in these ways; as far as the radiation treatment goes and its' effectiveness on the tumor. It is very easy to see how God has answered prayers of life, sub-leasers & lodging. But it has been a lot harder to just pray to Him asking Him to make radiation completely effective. It just seems harder to see how He can answer prayers in relation to this subject of health.
But like I said, after this meeting on Monday, I can see more of how He answers medical prayers. This came from hearing people from the meeting saying things like "It is because of God that their loved one's cancer is gone..." "God did this..." "God did that..." At first it just sounds almost weird to hear people saying things like that, to me at least when it comes to health stuff. But I think it's when it's in a personal way, when you feel like the pending outcome is not in your favor or the desired outcome is not possible like in the cases of some of the people at the Finding Hope meetings; then once the prayer is answered, you are sold on God and how He can answer. The two times, where I've just had the feeling of finally being sold on how God can answer in personal ways, was in the case of the sub-leaser & in the case of how smoothly lodging went back in November in getting into the Naz house & quickly followed by the HL. But to be 100% honest, I still have doubts when it comes to medical stuff; but I think it’s okay since we are only human.
"It's very humbling to be on the receiving end of prayer" & "Enjoy life as it is," were two quotes that stood out to me.
At the second meeting of week, we sang Christmas Carols. After this meeting, I walked out into the entry area of HL, where there's a greeting desk & offices. From one of the offices someone was playing the song by Hillsong, From the Inside out (Everlasting). She was playing it loud enough that it could be heard from the hallway. It was so good to hear this song!
During radiation treatment, they play soothing music & there's a flat screen tv above that plays nature images on it. The people who go into get me set up for treatment, mentioned that I could bring my own music in to listen to during tx. At first I thought, oh I could bring music like that song Everlasting & listen to that; but then they also said "Or maybe not," just because you will be reminded of treatment, every time you hear the song in the future. Haha, I don't think I want that. It's not too bad or anything, receiving treatment. There are about 7 different times that they shoot the radiation. The machine makes a noise every time. During some of the administrations of radiation, I get a metallic taste in my mouth, but that's normal. The doctor compared the type of radiation that I am receiving, Intensity Modulated Radiation Therapy, to if you were to take a lot of flashlights and direct them at a deer that was out in the middle of the road at night time; just how lit up and visible the deer would be under so many lights.
The second new thing, I've lost a patch of hair in front of and above my left ear where the radiation waves are going in, on the left side of my head. I just have to put Vasiline on the area. It's not a big deal as this is where Dr. Marsh, the neurosurgeon, gave me a bad haircut. (:
The third new thing has just been in learning more about Mayo itself and what's coming. There's a mini museum on the first floor of the Mayo/Gonda building. There they have a replica of a heart-lung bypass machine that was used in 1955, to perform Mayo's first open heart surgery to repair the wall of the heart that separates the left and right ventricles, chambers that pumps blood to the body & lungs. This was a cutting edge surgery at the time that it was performed, now a procedure that is performed all of the time across America. It has been so interesting to hear about some of the treatments/transplants that some of the people here at the HL are receiving. This one person will be the 10th person at the Mayo to receive stem cell transplant from the cells found within an umbilical cord to treat Leukemia. My dad has said a few times after seeing the heart-lung bypass machine today and after hearing about some of the newer therapies coming to Mayo: What a time to be alive, with all of that is available (medically speaking)! It is so cool to see the new advances in medicine and treatment being made here; and seeing the necessity for medical facilities like Mayo and other places to keep raising the bar, that way in 10, 20, 30 years what was once something new and only at certain facilities will be offered across the country anywhere. There is a new building being built near mayo, they're really just breaking ground; but by 2015 at the latest, it will be a new radiation treatment facility that offers Proton Radiation. With conventional & IMRT radiation, there are both entry rays and exit rays; meaning that it goes through one side and comes out the other side. With Proton Radiation, they can pin-point the depth that the radiation is needed within the body, therefore eliminating exit rays of radiation. I asked more about IMRT with the Certified Nurse Practitioner, although yes, I do have exit rays of radiation; with IMRT; it is like waves of radiation that are going in, where the dose of it is increased in the area of the brain where the tumor is located; therefore the dose can also be modified and lessened in the areas of lesser concern. So I guess the name of ‘intensity modulated' makes perfect sense.
The fourth new thing: I have a legit brain buddy now!! I've met a young couple from South Asia. The wife, who is closer to my age had a brain tumor mostly removed and is now receiving the same type of radiation. The funny thing is she has Dr. Yan as a radiation oncologist, AND that Dr. Yan's husband is a neurosurgeon here at Mayo who operated on the gal that I just met. CRAZINESS! Of course doctors don't always change their name, but Dr. Yan's husband is Dr. Parney. What a match, an oncologist with a neurosurgeon! I wonder what they talk about at the dinner table?! But it has just been nice to have met someone who is going through a lot of the same medical stuff, someone to be able to relate with.
Once again, last but not least: My dad and I will be driving back to KS for a short visit for Christmas!!! I will get to see my mom and brother & family!! Joe will be leaving for the Marines very soon, so it will be great to see him!! I was talking on the phone with Joe, he was like: I just mowed the lawn! It was just funny because back in PA at this time of year, he'd be shoveling snow.
Tuesday, December 6, 2011
After today: 1/3 of the way through... (:
So I forgot: Last week, when I was in the weight room, they were playing coffee shop classical music!!! Haha! They eventually turned it back to the normal type of music found in gyms, but I really enjoyed the coffee shop music!!
One thing, that I've always been very pleased with is the coordination of care provided; so far, there have only been a few moments of ugh with them, but considering all that we've done up here, I'm overall very pleased. Last week, Thursday I had four appointments in 3 different departments here. And today; I've received a phone call from Mayo from a separate department than the previously mentioned 3. The phone call was from a Doctor just to collaborate with the information that he read from the doctors notes from a couple of the appointments, and set up another appointment. I am very thankful for their system of charting and recording notes; as this is what has helped them to coordinate care so well with in this facility-- this has been very helpful; rather than me trying to connect the doctors notes of what can be done.
I've met and continue to meet people here that are just wonderful &entertaining. One of the grandmotherly figures being Sharon. We were in the tv room the other night, knitting and sewing; and we got to catch the last part of the movie Evan Almighty; which has an amazing dance scene at the end! She's now going to buy the DVD as a Christmas gift for her grandchildren.
Yesterday evening, Sharon and I along with a couple other ladies were going to on this Jolley Trolley trip to see Christmas lights; but it fell through. The one lady then told me her and her husband went and waited to go on this trip, waiting outside and "froze their rear axle's off." Haha! I've never heard it put that way.
One thing, that I've always been very pleased with is the coordination of care provided; so far, there have only been a few moments of ugh with them, but considering all that we've done up here, I'm overall very pleased. Last week, Thursday I had four appointments in 3 different departments here. And today; I've received a phone call from Mayo from a separate department than the previously mentioned 3. The phone call was from a Doctor just to collaborate with the information that he read from the doctors notes from a couple of the appointments, and set up another appointment. I am very thankful for their system of charting and recording notes; as this is what has helped them to coordinate care so well with in this facility-- this has been very helpful; rather than me trying to connect the doctors notes of what can be done.
I've met and continue to meet people here that are just wonderful &entertaining. One of the grandmotherly figures being Sharon. We were in the tv room the other night, knitting and sewing; and we got to catch the last part of the movie Evan Almighty; which has an amazing dance scene at the end! She's now going to buy the DVD as a Christmas gift for her grandchildren.
Yesterday evening, Sharon and I along with a couple other ladies were going to on this Jolley Trolley trip to see Christmas lights; but it fell through. The one lady then told me her and her husband went and waited to go on this trip, waiting outside and "froze their rear axle's off." Haha! I've never heard it put that way.
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