This weekend went very fast. It seems we don't even need to unpack the suitcases anymore...just pull out the dirty and put in the clean and head out again. We are getting pretty good at this traveling stuff now. The trip seems shorter and shorter each time...and no, I am not driving faster and faster!
Usually we see lots of deer when we travel, but today saw none. Not one. However, we did see many flocks of geese flying in large flocks, headed north. Is that unusual for the first part of February?
Justin has such ambition and motivation now! He is taking notes for the book he is writing--for the first time in many months. And he has a notebook full of camp information for a church that has purchased a camp and is looking for someone to help get it started. He is very excited to get back to living. His brain is full of ideas that have been stuck in there for many months, and they are just spilling out.
Thanks to Aunt Gorilla & Dave, and Pat & Carolyn for helping us on our journey. We are humbled and grateful. And thanks to all of you that are praying. We still pray that Justin will be 100% healed from his cancer, and we ask that you continue to pray, even through this time when things are looking good.
We have a very busy week, and will keep you up-to-date on everything going on, including the doctor's visit on Wednesday.
Sunday, February 8, 2009
Saturday, February 7, 2009
Future Opportunities
One of the caregivers staying at Hope Lodge and I have become friends and spend a lot of time talking, sharing, laughing, and even crying. She and I are making some plans in the future. Once we are back home and back to "normal", we are going to start working on trying to get some added funding for people staying at the Hope Lodge. After spending a month around many families, we have found similar problems in almost every family. The first thing is that life goes on. Every single person at the Lodge is setting aside regular employment for a time, yet all the bills and expenses are the same at home. The second is that they have added expenses for food, gas, added medications, and all the little things you need while away from home.
We have actually seen people who don't have food or money for food staying at the Lodge. They don't hang around in the dining area, and don't come down to eat much. Although there is food there that we share, it is not enough for proper daily nutrition.
There are people who have to work during their chemo and radiation just to pay the bills. One man here is a driver, and must drive daily, even when he is as sick as a dog from his chemo. Otherwise his family will lose everything. Some of the caregivers spend all week dealing with an ill person and their needs, medications, special foods or feeding tubes, appointments and travel, then go home and work all weekend at their jobs. Then back again for another hard week. They don't get a break.
My friend and I are trying to work a plan to get some funding for grocery and gas cards, donations for the bills still at home, etc. While we LOVE that the Hope Lodge is free for lodging, we know it is just a part of the big picture...and we hope to make it a little easier yet.
Justin and I are also working to get some Chaplains for the Lodge. We will begin that as soon as we are back. Hopefully there is already something in place, but we have not heard of it yet. We would like to see some pastors available to spend a little while volunteering at the Lodge, or be open to being "on call" if someone needs some help or counsel. Just to have someone to talk to would be an added benefit. There are days during this crisis time when a listening ear or a comforting word would be a blessing.
We have actually seen people who don't have food or money for food staying at the Lodge. They don't hang around in the dining area, and don't come down to eat much. Although there is food there that we share, it is not enough for proper daily nutrition.
There are people who have to work during their chemo and radiation just to pay the bills. One man here is a driver, and must drive daily, even when he is as sick as a dog from his chemo. Otherwise his family will lose everything. Some of the caregivers spend all week dealing with an ill person and their needs, medications, special foods or feeding tubes, appointments and travel, then go home and work all weekend at their jobs. Then back again for another hard week. They don't get a break.
My friend and I are trying to work a plan to get some funding for grocery and gas cards, donations for the bills still at home, etc. While we LOVE that the Hope Lodge is free for lodging, we know it is just a part of the big picture...and we hope to make it a little easier yet.
Justin and I are also working to get some Chaplains for the Lodge. We will begin that as soon as we are back. Hopefully there is already something in place, but we have not heard of it yet. We would like to see some pastors available to spend a little while volunteering at the Lodge, or be open to being "on call" if someone needs some help or counsel. Just to have someone to talk to would be an added benefit. There are days during this crisis time when a listening ear or a comforting word would be a blessing.
Friday, February 6, 2009
Time Flies
We are home for the weekend, and only a few weeks left of radiation. It does not seem like we have been at this for a month already!
If you would have asked me to guess how it would be 4 weeks into radiation therapy, I would not have guessed anything right. I would have thought Justin would be sick, tired and depressed. Instead, he is happy, healthy and active. I would have guessed that our days would be boring and we would be looking for things to do. But we are actually busy enough that we sometimes turn down opportunities. And I would have guessed that our weekends home would be full of fun, friends and family. It ends up that they are too short, we are wiped out emotionally, and spend the first day unwinding and the last day getting ready to go back.
If the first four weeks are any indication, the next two will be over with in a flash.
If you would have asked me to guess how it would be 4 weeks into radiation therapy, I would not have guessed anything right. I would have thought Justin would be sick, tired and depressed. Instead, he is happy, healthy and active. I would have guessed that our days would be boring and we would be looking for things to do. But we are actually busy enough that we sometimes turn down opportunities. And I would have guessed that our weekends home would be full of fun, friends and family. It ends up that they are too short, we are wiped out emotionally, and spend the first day unwinding and the last day getting ready to go back.
If the first four weeks are any indication, the next two will be over with in a flash.
Thursday, February 5, 2009
Blessings
I am sitting up late, waiting for Justin to finish a table game with some newfound friends here at the Lodge. It has been another amazing change, to watch Justin go from a very alone and quiet guy when he got here, to someone that is hanging out with the people closer to his age, playing cards with the older folks, and getting bored with the things he has been doing for many months. He is doing so much better than even last week!
Justin got a card in his mailbox from a little first grader with cars the boy had drawn..."hope you fel btr. do you lik my cars?" It was so cute! Every guest here got one from one of the kids in the class. This morning one of the volunteers left a little gift in all the mailboxes...a little charm to put on a zipper pull that says, "believe." Justin let me have it...it wasn't something he would use, but I love it. He got an early Valentine from a staff member, and a wonderful gift certificate for almost anyplace in the Iowa City area from friends Barb and Perry. He was very surprised and happy about that one and is trying to decide how to use it in the best way possible.
Justin will have radiation in the morning about 9:00, then we will head home for the weekend. No plans yet, but we will be glad to get home. It is nice to get a break and to get recharged for the upcoming week.
Justin got a card in his mailbox from a little first grader with cars the boy had drawn..."hope you fel btr. do you lik my cars?" It was so cute! Every guest here got one from one of the kids in the class. This morning one of the volunteers left a little gift in all the mailboxes...a little charm to put on a zipper pull that says, "believe." Justin let me have it...it wasn't something he would use, but I love it. He got an early Valentine from a staff member, and a wonderful gift certificate for almost anyplace in the Iowa City area from friends Barb and Perry. He was very surprised and happy about that one and is trying to decide how to use it in the best way possible.
Justin will have radiation in the morning about 9:00, then we will head home for the weekend. No plans yet, but we will be glad to get home. It is nice to get a break and to get recharged for the upcoming week.
Wednesday, February 4, 2009
Wednesday is Doctor Day
Today we saw the doctor for just a few minutes. He is very pleased with Justin and very happy that he is walking a mile or so daily. Again today, Justin had no skin trouble at the radiation site, no hair loss, no fatigue, and no other troubles. What a blessing.
I asked the doctor what strength the radiation is, just to find out. He said relatively low...that is what works for his type of tumor. I'm glad about that. It is nice to know they aren't zapping him with the highest power they have.
I have seen a remarkable change in Justin this week. He has virtually stopped having the daytime "blips", and is only having them at night. They are lighter and are similar to beginning to dream before you are asleep. Although they bother him, they are nothing like the stuff of the past. He is much happier, more animated, has his old "spunk" back. The best thing is that he is working very hard to get ideas together for a job he is hoping to get this spring. He talks about it and takes notes, and even had a hard time sleeping last night because he was excited thinking about working! This is a tremendous praise....Justin has HOPE again!
He is no longer happy sitting at home. We have to have plans each day...we go to the mall, a movie, go walking, play pool or anything that keeps boredom at bay.
A volunteer named Jess came in today to talk to Justin. He works in the press box at Kinnick Stadium. He is going to pick us up next Thursday and give us the grand tour of the stadium and Carver Hawkeye Arena. Justin is very excited to do this. It gives him something to look forward to.
This week we have done very little off campus. It has been pretty boring. I went to fill the gas tank and that's about it. We hope to do more next week.
Several meals this week were provided by volunteers--cheesy potato and ham soup for lunch on Tuesday and tacos and nachos tonight for supper. Tomorrow night is "Potluck" Spaghetti Dinner--we are bringing garlic bread, others will bring the rest. It is more fun to share a meal, but many of the people staying here are on special diets or feeding tubes, so not everyone can do it. Lots of the chemo patients have very sensitive stomaches and noses...some things just set them off. I didn't know this, but microwave popcorn sends the chemo patients running...they can't take the smell...it makes them sick.
The older lady from my earlier post this week was up in the kitchen today, in a wheelchair, looking out the window at the deer that hang out in our back yard. She actually looked at me, watched the deer, and responded to her husband regarding the deer. Good for her. She seems to be doing OK. That is a good thing.
I asked the doctor what strength the radiation is, just to find out. He said relatively low...that is what works for his type of tumor. I'm glad about that. It is nice to know they aren't zapping him with the highest power they have.
I have seen a remarkable change in Justin this week. He has virtually stopped having the daytime "blips", and is only having them at night. They are lighter and are similar to beginning to dream before you are asleep. Although they bother him, they are nothing like the stuff of the past. He is much happier, more animated, has his old "spunk" back. The best thing is that he is working very hard to get ideas together for a job he is hoping to get this spring. He talks about it and takes notes, and even had a hard time sleeping last night because he was excited thinking about working! This is a tremendous praise....Justin has HOPE again!
He is no longer happy sitting at home. We have to have plans each day...we go to the mall, a movie, go walking, play pool or anything that keeps boredom at bay.
A volunteer named Jess came in today to talk to Justin. He works in the press box at Kinnick Stadium. He is going to pick us up next Thursday and give us the grand tour of the stadium and Carver Hawkeye Arena. Justin is very excited to do this. It gives him something to look forward to.
This week we have done very little off campus. It has been pretty boring. I went to fill the gas tank and that's about it. We hope to do more next week.
Several meals this week were provided by volunteers--cheesy potato and ham soup for lunch on Tuesday and tacos and nachos tonight for supper. Tomorrow night is "Potluck" Spaghetti Dinner--we are bringing garlic bread, others will bring the rest. It is more fun to share a meal, but many of the people staying here are on special diets or feeding tubes, so not everyone can do it. Lots of the chemo patients have very sensitive stomaches and noses...some things just set them off. I didn't know this, but microwave popcorn sends the chemo patients running...they can't take the smell...it makes them sick.
The older lady from my earlier post this week was up in the kitchen today, in a wheelchair, looking out the window at the deer that hang out in our back yard. She actually looked at me, watched the deer, and responded to her husband regarding the deer. Good for her. She seems to be doing OK. That is a good thing.
Tuesday, February 3, 2009
Halfway
Today marks the halfway point with Justin's radiation treatments. He is thrilled.
The patients can take their own music in the cancer center when they get their treatments (otherwise they have to listen to piped-in elevator music--not his type!). Justin has made friends with the staff and has been taking some really weird stuff in there, just to make them laugh. He has an amazing collection of all types of music, some just for weirdness. He actually has CD of William Shatner of Star Trek! So each day the radiation staff await his choice for the day. They always get a good laugh, or at least a surprise. It helps him pass the time in a fun way.
Today Justin got a card from his Grandma Jo. She sends him a lot of things and he really enjoys getting something in the mailbox. While we were sitting in the dining room eating lunch, a staff member brought a box in for him--it was flowers and encouragement from my friend Kelly Jo! I arranged them and Justin decided to leave them in the dining room where everyone could enjoy them. They smell wonderful and everyone is enjoying the fresh flowers.
Thanks Mom and Kelly Jo for the encouragement, and thanks friends for your thoughts and prayers!
The patients can take their own music in the cancer center when they get their treatments (otherwise they have to listen to piped-in elevator music--not his type!). Justin has made friends with the staff and has been taking some really weird stuff in there, just to make them laugh. He has an amazing collection of all types of music, some just for weirdness. He actually has CD of William Shatner of Star Trek! So each day the radiation staff await his choice for the day. They always get a good laugh, or at least a surprise. It helps him pass the time in a fun way.
Today Justin got a card from his Grandma Jo. She sends him a lot of things and he really enjoys getting something in the mailbox. While we were sitting in the dining room eating lunch, a staff member brought a box in for him--it was flowers and encouragement from my friend Kelly Jo! I arranged them and Justin decided to leave them in the dining room where everyone could enjoy them. They smell wonderful and everyone is enjoying the fresh flowers.
Thanks Mom and Kelly Jo for the encouragement, and thanks friends for your thoughts and prayers!
Sunday, February 1, 2009
Super Bowl
Justin and I returned to Iowa City in time to see the football game. It was nice to be here and settled in, instead of having to drive in late at night or early in the morning. It is very quiet here, and the kitchen was all shut down by 9:00 pm, which is unusually early.
I was making nachos for all of us watching the game, and the husband from my last blog came in. I asked him how his wife was doing and he said, "oh, real good." Hmm. I hope so.
This is our "middle" week. This is the week that he will pass the halfway point. So far we have not seen any problems due to the radiation, and hope it stays that way.
Now that I have not worked for a month, we are really feeling the pinch. It is going to be a tough month or so until I can get back to work. I am so thankful that God has provided everything we have needed. I am sure He will continue that. I will not let myself worry.
I was making nachos for all of us watching the game, and the husband from my last blog came in. I asked him how his wife was doing and he said, "oh, real good." Hmm. I hope so.
This is our "middle" week. This is the week that he will pass the halfway point. So far we have not seen any problems due to the radiation, and hope it stays that way.
Now that I have not worked for a month, we are really feeling the pinch. It is going to be a tough month or so until I can get back to work. I am so thankful that God has provided everything we have needed. I am sure He will continue that. I will not let myself worry.
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