On Thursday afternoon, a couple in their mid 80s were walking through the Hope Lodge to their car to go to her radiation treatments. It was their first day. She is in frail health and does not have the strength to do much. She walks with a walker. The husband must not have thought about the distance from their room to the car. It is a long way.
I didn't know any of this yet...
I was texting a friend, walking down the hall to the lobby. I heard the director say to the husband, "GET A CHAIR!" while holding this now limp woman up...all her strength was gone. He was holding her under her armpits while the husband was looking and not finding a chair. I ran to a rocking chair and slid it right behind her. The director and I helped sit her down. I had not met her yet or even seen her face. When she sat down and I looked at her, I was really surprised. She had very thin, transparent skin. Her eyes were glassy and were staring off into space as though she was not seeing anything. Her legs were so weak from walking that they were shaking. My inner thought was that she looked near death. I talked to her for a second and told her to relax and rest. She did not respond to me.
The husband kept telling us that she was fine. Over and over.
He had parked the car just outside of the doors and about 15 feet out. Long story short, the three of us worked with doors, the walker, the car door, the curb, the dead weight and her legs just dangling while we tried to get her propelled forward, sideways, bent in half to get into the car, and then swiveled to face forward. I had to go in through the drivers side and pull her backside onto the seat without allowing her to just fall. As soon as she was seated, I softly told her that she was done working so hard and she could rest. Once again, no response.
I went in and found where I dropped my phone. I was finishing my text when the director came back in. He was wet from sweat from this event. He thanked me quietly and gave me a little hug. I could tell he was shook up. He had told the husband to borrow a wheelchair from the hospital before returning. Then he said he was going to follow them over to make sure they got to her treatment.
I was trying to imagine how in the world they were going to get her out of the car, into a wheelchair, then on to the table for radiation, back into the wheelchair, back into the car and then out of the car and into their room and onto the bed, all without much help from the patient. And then repeat daily for the next 7 weeks, plus many daily trips to the bathroom and dining room. Just one trip from room to car was exhausting.
As a person, I was glad to help. I was in the right place at the right time and could be of assistance. But as a mom of a cancer patient, it scared me. I don't like looking ahead too much. I don't want to think of Justin or me or other family members going through this. I told one of the other caregivers, "this is a place no one wants to visit before they move here."
My mom reminded me that is why we try to live "one day at a time". It is not good to worry over something you have no control over. So true.
I have been wondering if this dear lady will still be living when we return tomorrow. And thanking God for the strength that Justin has, physically and spiritually.
Saturday, January 31, 2009
Thursday, January 29, 2009
Another Weekend Already
Time is going so fast here. Justin has now had 11 of his treatments--that is almost half. It seems like he just started and he will be done before you know it.
We will leave for home as soon as radiation is over in the morning. It will be good to be there, and yet, almost immediately we will have to come back again. It is nice to get a break, that's for sure.
We again got tickets to see the Iowa Men's basketball game. People donate tickets they can't use and that enables a bunch of us to go. The game wasn't the greatest, but the atmosphere was fun. We walked a lap around the arena before the game and a lap after the game, so we got in over a half mile of walking today. Such a huge improvement from 3 weeks ago when he spent most of his time watching TV or trying to sleep.
Justin saw a black Iowa hoodie that he liked. He very seldom asks for anything, so it surprised me that he not only asked, but told me exactly the one he wants. Instead of buying one at the game (which we don't have money for), I told him that we can check on the Internet to see what we can find there. He is OK with that.
We will leave for home as soon as radiation is over in the morning. It will be good to be there, and yet, almost immediately we will have to come back again. It is nice to get a break, that's for sure.
We again got tickets to see the Iowa Men's basketball game. People donate tickets they can't use and that enables a bunch of us to go. The game wasn't the greatest, but the atmosphere was fun. We walked a lap around the arena before the game and a lap after the game, so we got in over a half mile of walking today. Such a huge improvement from 3 weeks ago when he spent most of his time watching TV or trying to sleep.
Justin saw a black Iowa hoodie that he liked. He very seldom asks for anything, so it surprised me that he not only asked, but told me exactly the one he wants. Instead of buying one at the game (which we don't have money for), I told him that we can check on the Internet to see what we can find there. He is OK with that.
Wednesday, January 28, 2009
A Good Report
Today was the weekly meeting with Justin's doctors. They checked with him on several things. What is your pain level? Do you have any skin problems at the radiation site? Are you getting nausea? Are you losing hair? How do you feel? Do you have any fatigue? Then they did a quick look at his scalp and saw no problems.
The doctor shook his hand and said, "this is rather boring and that is the way we like it." And that was it until next week.
We walked at the mall and then saw a movie before supper. It was fun to get away and laugh our heads off.
Justin gained a pound since last week. Now he has lost 60 lbs since April instead of 61. That is fine with me. He is eating and walking and not spending all his time sitting or sleeping.
One of the gals here asked me what level of radiation Justin is taking. I guess there are differing strengths or something. If I remember, I will ask next time. At this point, I figure the doctor is giving him the right amount, so it is not a priority. I suppose if he was sicker, I would worry it was too strong or not strong enough.
Some days, NOT knowing some of these things is OK.
The doctor shook his hand and said, "this is rather boring and that is the way we like it." And that was it until next week.
We walked at the mall and then saw a movie before supper. It was fun to get away and laugh our heads off.
Justin gained a pound since last week. Now he has lost 60 lbs since April instead of 61. That is fine with me. He is eating and walking and not spending all his time sitting or sleeping.
One of the gals here asked me what level of radiation Justin is taking. I guess there are differing strengths or something. If I remember, I will ask next time. At this point, I figure the doctor is giving him the right amount, so it is not a priority. I suppose if he was sicker, I would worry it was too strong or not strong enough.
Some days, NOT knowing some of these things is OK.
Tuesday, January 27, 2009
Heartbreak
There is a young man here at Hope Lodge that is about Justin's age. Even though he lives across the hall from us, eats at the same time we do, and goes to radiation treatments at the same time, he has never warmed up to either of us. He is alone all the time. No visitors, no phone calls, no mail, and no dining room conversations with anyone. I always smile, say hi, wave, and whatever I can to befriend him, but he does not respond. I'm OK with that because I don't know of his situation or illness. I try, and that is enough.
Tonight my heart is breaking for him. He had his last treatment early this morning and was cleared to go home. Usually you know at least a week ahead that you have a certain number of treatments left, so it is not a surprise when you are done. Even though he is in a wheelchair, he packed all his stuff, put it on the cart, took it down to the lobby and waited. And waited. And waited.
After supper his stuff was still in the lobby. The staff person had been trying to reach his dad, who was supposed to pick him up. Now it is 11:30 at night, and he is still here. The staff person just came into the living room area and told him all his stuff is back in his room and the bed is made up again. Still no dad, still no word when he will finally get here.
I feel so bad for him. Bad that he couldn't get out of here at 9:20 this morning. Bad that he has had to wait through lunch, then supper, then the whole evening for nothing. But the worst thing is, where is his dad? What could possibly be more important than picking up your son from cancer treatments? Things come up, but come on, give your kid a call! Don't make him sit there by the door in expectation! It brought back some painful memories of Justin's childhood. He sat at the door waiting many times. Too many times. And here is another son who has suffered the same fate.
I am thankful from the bottom of my heart for the privilege of being able to be here for Justin. We have had to sacrifice, but he is worth it, over and over again. I wouldn't want it any other way.
Tonight my heart is breaking for him. He had his last treatment early this morning and was cleared to go home. Usually you know at least a week ahead that you have a certain number of treatments left, so it is not a surprise when you are done. Even though he is in a wheelchair, he packed all his stuff, put it on the cart, took it down to the lobby and waited. And waited. And waited.
After supper his stuff was still in the lobby. The staff person had been trying to reach his dad, who was supposed to pick him up. Now it is 11:30 at night, and he is still here. The staff person just came into the living room area and told him all his stuff is back in his room and the bed is made up again. Still no dad, still no word when he will finally get here.
I feel so bad for him. Bad that he couldn't get out of here at 9:20 this morning. Bad that he has had to wait through lunch, then supper, then the whole evening for nothing. But the worst thing is, where is his dad? What could possibly be more important than picking up your son from cancer treatments? Things come up, but come on, give your kid a call! Don't make him sit there by the door in expectation! It brought back some painful memories of Justin's childhood. He sat at the door waiting many times. Too many times. And here is another son who has suffered the same fate.
I am thankful from the bottom of my heart for the privilege of being able to be here for Justin. We have had to sacrifice, but he is worth it, over and over again. I wouldn't want it any other way.
Monday, January 26, 2009
Can't Anything Be Simple?
Why is it that nothing is ever simple? Does everything have to be complicated?
Last week I got a root canal done. No big deal. Except the Endodontist broke my crown. He didn't even bother to say, "oops, sorry...", he just told me that I would have to go to my own dentist to have it fixed, since he doesn't do ceramic crowns. Nice. He didn't bother to get out his wallet and pay for it, either. Oh, and the filling he put in was a temporary one that would only last 3 weeks. Well, gee, that's OK, I'm not doing anything OUT OF TOWN right now, anyway...
Well, of course my dentist is closed on Fridays (the only weekday we are in town), so I had to see if we could get Justin's radiation time changed Monday in order for me to get the work done. They had a 4:15 pm, so we took it.
Meanwhile, Justin has been calling the pharmacy for the refill on his meds. It is automated, so it just says yes, you get it, or no, you don't. It kept saying no. So after a few days, he finally reached a real person, who let him know his pharmacy insurance was about to expire, he would have to reapply. Of course it was the weekend before we figured this out, AND he only has enough to last until Tuesday, AND we aren't in Des Moines all week AND his pharmacy insurance is for Polk County but his doctors aren't...Noooooooo!
So upon awakening this morning, I called the gal in charge of Piles Of Paperwork. Oh, they had a meeting until 10:00am. Of course, they did. And 10:00 was my dental appointment. So I left a message. She finally returned my call just before noon to let me know that we had to have all the same information from the last time we applied. This meant going to Iowa Workforce Development to get a form signed saying he is unemployed. The clock is ticking people! His radiation 120 miles away, at 4:15!
So we threw our suitcases and stuff in the truck and off we went downtown...during lunch hour, when everyone needed what we did. Justin went in IWD and got to take a number....they were on #42 and he got #55. Tick tock tick tock...I hadn't eaten due to the dental work, so I ran to grab a sandwich. Tick, tock.
He got the paper he needed by 1:00. Off we went to the hospital to take the papers to the nice lady. She had someone in her office, so we had to wait. Tick, tock. She said she had given the OK for his insurance to be extended for 30 days, so we could just run down to the pharmacy and pick up his meds. She would file all the paperwork so his insurance would be good for a year.
So off to the pharmacy. Four windows open, four pharmacists ready and waiting. "Take a number, please." Tick, tock. They called Justin up. "We can't refill your meds...there are zero refills." We know this. We have called 10 times to make sure they know this so the docs can OK it ahead of time. That is what WALGREENS does, folks... "You will have to go up to the outpatient clinic and get a doctor to OK this. AAAAaaaarrrrgggghhhh. Tick, tock.
Smile on face. Tick, tock. Up the elevator again. Tick, tock. Smile as we take a number to check in. We get #77, and they are on #74 with one person doing the check in. Tick, tock. 1:27pm...Smile at the nice lady in the window of "Customer Service". IN A HOSPITAL? Tick, tock. Smile and explain the whole situation, so that she understands that the clock is ticking....
She was very nice and said, "I will call the Patient Advocate." And she does. Then she hangs up. "The Patient Advocate says there is no way to speed this up." Tick, tock. I thank her so much for trying to help.
They call our number. I smile while biting my tongue. I explain for the 6th time why it is important that we get this done quickly. So there I am with Justin, the clerk, the Patient Advocate, the customer service rep, all "helping" to get us through this "system". They said to go into the clinic and they would be with us as soon as possible. I thank them and smile nicely. I am a face liar. My face lies about what is in my mouth, waiting to get out....however, I am beginning to see that my kindness goes far...
We wait in the clinic. TICK, TOCK. 1:40 pm. We must be on the road by 2:00 so we aren't late. Finally a nurse comes out and calls us to the back. I again smile, again explain our situation, thank them profusely for helping us and being so kind...
The doctor there decides to make sure that the doctor that saw Justin in the ER 5 months ago would even want him as a patient, and if so, she could OK the meds. We wait for the doctor to call back. Tick, Tock. Of course she is over in the other clinic, it is VERY busy today... Finally she calls, and remembers Justin, and wants him to be "her" patient. She OKs the meds. The doc wrote up a refill for ONE month, and also wrote a lab order for Justin to come in for labs before they OK any more than that. Whatever....tick, tock.
Back down the elevator to the pharmacy. Four windows open, no pharmacists available. "Take a number, please." Tick, Tock...1:50pm. They called us up. I explain for the 8th time that we are in a hurry due to his radiation...smile....thank you, mam. She just sat there, smiling and said, "I will fill this for you right now. It might take about 20 minutes." And she just sat there, smiling. All relaxed and settled in like a jellyfish. TICK, TOCK LADY!!!
At 1:59, we were in the car, headed to Iowa City. All this, just for some pills. There has got to be a better way. Those were 2 of the longest hours of my life.
We were on time to radiation today. THAT was a miracle.
Last week I got a root canal done. No big deal. Except the Endodontist broke my crown. He didn't even bother to say, "oops, sorry...", he just told me that I would have to go to my own dentist to have it fixed, since he doesn't do ceramic crowns. Nice. He didn't bother to get out his wallet and pay for it, either. Oh, and the filling he put in was a temporary one that would only last 3 weeks. Well, gee, that's OK, I'm not doing anything OUT OF TOWN right now, anyway...
Well, of course my dentist is closed on Fridays (the only weekday we are in town), so I had to see if we could get Justin's radiation time changed Monday in order for me to get the work done. They had a 4:15 pm, so we took it.
Meanwhile, Justin has been calling the pharmacy for the refill on his meds. It is automated, so it just says yes, you get it, or no, you don't. It kept saying no. So after a few days, he finally reached a real person, who let him know his pharmacy insurance was about to expire, he would have to reapply. Of course it was the weekend before we figured this out, AND he only has enough to last until Tuesday, AND we aren't in Des Moines all week AND his pharmacy insurance is for Polk County but his doctors aren't...Noooooooo!
So upon awakening this morning, I called the gal in charge of Piles Of Paperwork. Oh, they had a meeting until 10:00am. Of course, they did. And 10:00 was my dental appointment. So I left a message. She finally returned my call just before noon to let me know that we had to have all the same information from the last time we applied. This meant going to Iowa Workforce Development to get a form signed saying he is unemployed. The clock is ticking people! His radiation 120 miles away, at 4:15!
So we threw our suitcases and stuff in the truck and off we went downtown...during lunch hour, when everyone needed what we did. Justin went in IWD and got to take a number....they were on #42 and he got #55. Tick tock tick tock...I hadn't eaten due to the dental work, so I ran to grab a sandwich. Tick, tock.
He got the paper he needed by 1:00. Off we went to the hospital to take the papers to the nice lady. She had someone in her office, so we had to wait. Tick, tock. She said she had given the OK for his insurance to be extended for 30 days, so we could just run down to the pharmacy and pick up his meds. She would file all the paperwork so his insurance would be good for a year.
So off to the pharmacy. Four windows open, four pharmacists ready and waiting. "Take a number, please." Tick, tock. They called Justin up. "We can't refill your meds...there are zero refills." We know this. We have called 10 times to make sure they know this so the docs can OK it ahead of time. That is what WALGREENS does, folks... "You will have to go up to the outpatient clinic and get a doctor to OK this. AAAAaaaarrrrgggghhhh. Tick, tock.
Smile on face. Tick, tock. Up the elevator again. Tick, tock. Smile as we take a number to check in. We get #77, and they are on #74 with one person doing the check in. Tick, tock. 1:27pm...Smile at the nice lady in the window of "Customer Service". IN A HOSPITAL? Tick, tock. Smile and explain the whole situation, so that she understands that the clock is ticking....
She was very nice and said, "I will call the Patient Advocate." And she does. Then she hangs up. "The Patient Advocate says there is no way to speed this up." Tick, tock. I thank her so much for trying to help.
They call our number. I smile while biting my tongue. I explain for the 6th time why it is important that we get this done quickly. So there I am with Justin, the clerk, the Patient Advocate, the customer service rep, all "helping" to get us through this "system". They said to go into the clinic and they would be with us as soon as possible. I thank them and smile nicely. I am a face liar. My face lies about what is in my mouth, waiting to get out....however, I am beginning to see that my kindness goes far...
We wait in the clinic. TICK, TOCK. 1:40 pm. We must be on the road by 2:00 so we aren't late. Finally a nurse comes out and calls us to the back. I again smile, again explain our situation, thank them profusely for helping us and being so kind...
The doctor there decides to make sure that the doctor that saw Justin in the ER 5 months ago would even want him as a patient, and if so, she could OK the meds. We wait for the doctor to call back. Tick, Tock. Of course she is over in the other clinic, it is VERY busy today... Finally she calls, and remembers Justin, and wants him to be "her" patient. She OKs the meds. The doc wrote up a refill for ONE month, and also wrote a lab order for Justin to come in for labs before they OK any more than that. Whatever....tick, tock.
Back down the elevator to the pharmacy. Four windows open, no pharmacists available. "Take a number, please." Tick, Tock...1:50pm. They called us up. I explain for the 8th time that we are in a hurry due to his radiation...smile....thank you, mam. She just sat there, smiling and said, "I will fill this for you right now. It might take about 20 minutes." And she just sat there, smiling. All relaxed and settled in like a jellyfish. TICK, TOCK LADY!!!
At 1:59, we were in the car, headed to Iowa City. All this, just for some pills. There has got to be a better way. Those were 2 of the longest hours of my life.
We were on time to radiation today. THAT was a miracle.
Saturday, January 24, 2009
Seriously?
I met a woman that is staying at the Hope Lodge, too. I'll call her Jane.
Jane is a smoker. And she is going through chemo and radiation for lung cancer. She talked to me about it this week. She said she was just SHOCKED that she got lung cancer. She said her family never gets cancer, they all die of stroke or heart disease. She is still in disbelief that this happened to her.
I so wanted to say to her, "haven't they been teaching you since preschool that smoking causes cancer? Hasn't every single pack of cigarettes you have smoked had a warning label about the dangers?" but I could see she was in denial. She just could not believe that she actually GOT CANCER. The look on her face 24/7 is one of disbelief. How could this happen to her?
As I thought about it, I realized that all of us are often like this. People warn us all through our lives that our behaviors will cause trouble or hardship...but we believe "it will not happen to me." Jane is living proof, it does happen.
Maybe it is time we "read the label" and heed the warnings.
Jane is a smoker. And she is going through chemo and radiation for lung cancer. She talked to me about it this week. She said she was just SHOCKED that she got lung cancer. She said her family never gets cancer, they all die of stroke or heart disease. She is still in disbelief that this happened to her.
I so wanted to say to her, "haven't they been teaching you since preschool that smoking causes cancer? Hasn't every single pack of cigarettes you have smoked had a warning label about the dangers?" but I could see she was in denial. She just could not believe that she actually GOT CANCER. The look on her face 24/7 is one of disbelief. How could this happen to her?
As I thought about it, I realized that all of us are often like this. People warn us all through our lives that our behaviors will cause trouble or hardship...but we believe "it will not happen to me." Jane is living proof, it does happen.
Maybe it is time we "read the label" and heed the warnings.
Friday, January 23, 2009
Back at Home
This morning at the Hope Lodge, things were VERY quiet. Almost everyone had plans to return home for the weekend. It has been a tough week for many, and we all just wanted to get home to "normal" for the weekend. It is a wonderful place, but it is just plain hard to be with so many people with such huge obstacles and health issues. We all need some time to unwind and relax.
I am always surprised when I hear people's stories. Most of them have double issues; "well, I lost my house in the June floods, and just when we were ready to rebuild, I was diagnosed with cancer." Or, "my dad died in the winter and my mom got cancer in the spring." Life doesn't stop when you have cancer, it just keeps going, good or bad. Most of the people are strong and resilient (at least in public). You seldom see them break down or lose it. They just take the next step, day after day, which is what we would all do. Every single one of the caregivers has said, "I wish I could take it on myself so my loved one wouldn't have to go through this."
Now that Justin has had 6 treatments, I am curious to see if I notice any changes. The nurse said it was a little too early to tell, but we are so ready for his little daily "blips" to stop. WAY ready.
I am always surprised when I hear people's stories. Most of them have double issues; "well, I lost my house in the June floods, and just when we were ready to rebuild, I was diagnosed with cancer." Or, "my dad died in the winter and my mom got cancer in the spring." Life doesn't stop when you have cancer, it just keeps going, good or bad. Most of the people are strong and resilient (at least in public). You seldom see them break down or lose it. They just take the next step, day after day, which is what we would all do. Every single one of the caregivers has said, "I wish I could take it on myself so my loved one wouldn't have to go through this."
Now that Justin has had 6 treatments, I am curious to see if I notice any changes. The nurse said it was a little too early to tell, but we are so ready for his little daily "blips" to stop. WAY ready.
Thursday, January 22, 2009
Tired Day
We were so busy yesterday, that Justin is tired today. We went to the game last night and it went into overtime. It was fun, but very tiring.
Radiation was fast, as usual, and we walked our lap at the mall. Other than that, it has been quiet.
We are happy that tomorrow we can go home for the weekend. We both need to get out of here and back to normal for a few days.
Radiation was fast, as usual, and we walked our lap at the mall. Other than that, it has been quiet.
We are happy that tomorrow we can go home for the weekend. We both need to get out of here and back to normal for a few days.
Wednesday, January 21, 2009
A Loss and Good News
I hadn't seen Cherie or Alan since Monday afternoon. That was unusual. As I was walking past the front desk, I saw a sympathy card addressed to someone with the first name "Cherie". My heart sank. We don't know each other's last names here, so I tracked down a staff member, just to be sure. She softly let me know that Alan had died during the night. She said everyone was really surprised...they felt like he was a fighter and would have lived many more months.
It REALLY hit me hard. I hurt for Cherie. She had so much on her plate, but now she is without her husband of many years. But I guess this whole thing became more real to me. I have been able to put off the future by dealing with the day-to-day. I don't want to dwell on the future, full of things I know nothing of, but I don't want to ignore it either.
It is days like this that I want to ask why me? or why us? But I have learned during my life that I am to say, why not me? or why not us? It is not my place to question why, just trust God to help us through the "how". Take a big breath and a step forward....
On a brighter note, Justin says he is feeling better. He had quite a lot of energy today. After his treatment, we saw the medical team. Justin has no symptoms, no complaints and no questions. The doctor said, "so far, so good". They have no news to report, no issues and no problems. He said this is how he likes to see treatments go.
We went to the mall to walk a lap, and tonight we were given tickets to the Iowa men's basketball game. We are really looking forward to that.
It REALLY hit me hard. I hurt for Cherie. She had so much on her plate, but now she is without her husband of many years. But I guess this whole thing became more real to me. I have been able to put off the future by dealing with the day-to-day. I don't want to dwell on the future, full of things I know nothing of, but I don't want to ignore it either.
It is days like this that I want to ask why me? or why us? But I have learned during my life that I am to say, why not me? or why not us? It is not my place to question why, just trust God to help us through the "how". Take a big breath and a step forward....
On a brighter note, Justin says he is feeling better. He had quite a lot of energy today. After his treatment, we saw the medical team. Justin has no symptoms, no complaints and no questions. The doctor said, "so far, so good". They have no news to report, no issues and no problems. He said this is how he likes to see treatments go.
We went to the mall to walk a lap, and tonight we were given tickets to the Iowa men's basketball game. We are really looking forward to that.
Tuesday, January 20, 2009
Another Week
Due to Justin's radiation being at 9:00 each morning, we decided to return to Iowa City the evening before, rather than having to get up early and rush around to get here. It is so much easier that way.
When we returned Monday night, we again saw Cherie and Alan. I hadn't seen them for a few days. He seemed in pretty good spirits. He had his Bible on the dining room table and was underlining verses with a highlighter. I didn't have much time to talk, but told them I would see them later.
I brought my sewing machine along this time, so I have something to do while Justin is busy or napping. I like to read, but sitting in the same place for hours isn't so much fun anymore, so I needed something else to do. Another mom brought her scrapbooking, so we have our stuff in a meeting room, ready when we are. I have found this to be quite satisfying. My goal is to finish up quite a few of my undone projects. I have 2 done already and I'm on my 3rd book.
Justin is glad to be underway with his treatment. We will meet with his medical team of doctors, nurses and residents every Wednesday after his radiation. They will let us know how things are going and see if we have any questions or problems.
When we returned Monday night, we again saw Cherie and Alan. I hadn't seen them for a few days. He seemed in pretty good spirits. He had his Bible on the dining room table and was underlining verses with a highlighter. I didn't have much time to talk, but told them I would see them later.
I brought my sewing machine along this time, so I have something to do while Justin is busy or napping. I like to read, but sitting in the same place for hours isn't so much fun anymore, so I needed something else to do. Another mom brought her scrapbooking, so we have our stuff in a meeting room, ready when we are. I have found this to be quite satisfying. My goal is to finish up quite a few of my undone projects. I have 2 done already and I'm on my 3rd book.
Justin is glad to be underway with his treatment. We will meet with his medical team of doctors, nurses and residents every Wednesday after his radiation. They will let us know how things are going and see if we have any questions or problems.
Monday, January 19, 2009
Holidays and Hard Days
Due to the Martin Luther King Holiday, Justin doesn't have radiation today. Although it is nice to have a day off, it just makes the radiation go another day longer.
I didn't realize how tough it was going to be to do this. In our usual life, we have problems, you have problems, everyone struggles at times with hardships and trials. If you haven't, you will. But now we are surrounded by dozens of people who are in the midst of life and death! They are struggling with things much bigger than the normal problems of life. I didn't realize how hard it would be on my emotions until I was home again. It took me a day or so to just to adjust back to normal.
We feel that we have been ushered into whole new lives. The people are different, the places are different, and the circumstances are different. Suddenly everything is new and much harder. And yet, God is here, just as He was, and just as He will be.
I didn't realize how tough it was going to be to do this. In our usual life, we have problems, you have problems, everyone struggles at times with hardships and trials. If you haven't, you will. But now we are surrounded by dozens of people who are in the midst of life and death! They are struggling with things much bigger than the normal problems of life. I didn't realize how hard it would be on my emotions until I was home again. It took me a day or so to just to adjust back to normal.
We feel that we have been ushered into whole new lives. The people are different, the places are different, and the circumstances are different. Suddenly everything is new and much harder. And yet, God is here, just as He was, and just as He will be.
Saturday, January 17, 2009
A Visit From Josh
Josh flew in from Atlanta to spend the weekend with Justin, and take Justin's car back to Atlanta with him. They need a 2nd car and coincidentally, Justin can't drive for awhile, so it worked out well.
It is fun to have all the guys together again!
It is fun to have all the guys together again!
Friday, January 16, 2009
Goin' Home Again
At the Hope Lodge, we are responsible to do our own laundry, including our sheets and towels. So this morning we got all of that done so that when we return, everything will be clean and fresh. We got all packed and ready to go back to Des Moines for the weekend, and had two things left to do. One was Justin's treatment.
The other was a root canal for me. I have been having trouble with this tooth for awhile, and it flared up about 2 weeks ago. I take Ibuprofen all the time to keep it from aching. I called my dentist, who doesn't do root canals. We decided that Iowa City would be a good place for me to have it done, so I made the appointment.
Before I left, I got to see Cherie and Alan. I told them if my kid could go through radiation and brain cancer, I could have a root canal without complaint. They just chuckled. He spoke with Justin for a few minutes about the radiation, the similarities of their tumors, and how everything was going. Alan was so sweet to take some time to encourage Justin along the way.
The root canal itself wasn't much. Very similar to a filling...it just took a lot longer. But while the dentist was drilling, he accidentally broke the crown on the tooth. I have ceramic crowns, and he doesn't have much experience with them. So now I have a temporary filling, and will have to set up an appointment for my dentist to put in a new crown. Ugh. Wasn't ready for that.
The other was a root canal for me. I have been having trouble with this tooth for awhile, and it flared up about 2 weeks ago. I take Ibuprofen all the time to keep it from aching. I called my dentist, who doesn't do root canals. We decided that Iowa City would be a good place for me to have it done, so I made the appointment.
Before I left, I got to see Cherie and Alan. I told them if my kid could go through radiation and brain cancer, I could have a root canal without complaint. They just chuckled. He spoke with Justin for a few minutes about the radiation, the similarities of their tumors, and how everything was going. Alan was so sweet to take some time to encourage Justin along the way.
The root canal itself wasn't much. Very similar to a filling...it just took a lot longer. But while the dentist was drilling, he accidentally broke the crown on the tooth. I have ceramic crowns, and he doesn't have much experience with them. So now I have a temporary filling, and will have to set up an appointment for my dentist to put in a new crown. Ugh. Wasn't ready for that.
Thursday, January 15, 2009
Our New Life
Today was a normal day of our new life. Up in the morning, breakfast, in the car to drive to the Radiation Center, then off to find something to do for the rest of the day.
The weather has been bitter cold with temps way below zero. I told Justin to pack his winter coat and he told me he didn't have one anymore...he left it back at college. So off we went today to get him a real coat. After searching many stores, we finally found a really good one. On sale. Unfortunately, the sale price was way more than I wanted to spend...but everything else was very low quality. Oh, well, now we won't have to worry about it anymore. He is warm, and I am happy.
We have been getting to know the others staying here. I met one couple last night-Cherie and Alan. Alan has a brain tumor similar to Justin's, but in the later stage. His doc told him if he did all the treatments, he might live 14 more months. He was very concerned about Justin and was a real encouragement to me. I found out quickly that they are Christians, so the bond we share was evident from the start. Now I look for them each time I go to the common areas.
The weather has been bitter cold with temps way below zero. I told Justin to pack his winter coat and he told me he didn't have one anymore...he left it back at college. So off we went today to get him a real coat. After searching many stores, we finally found a really good one. On sale. Unfortunately, the sale price was way more than I wanted to spend...but everything else was very low quality. Oh, well, now we won't have to worry about it anymore. He is warm, and I am happy.
We have been getting to know the others staying here. I met one couple last night-Cherie and Alan. Alan has a brain tumor similar to Justin's, but in the later stage. His doc told him if he did all the treatments, he might live 14 more months. He was very concerned about Justin and was a real encouragement to me. I found out quickly that they are Christians, so the bond we share was evident from the start. Now I look for them each time I go to the common areas.
Wednesday, January 14, 2009
Trial Run
Justin had a trial run today, to make sure all was ready when he starts getting radiation tomorrow. It was easy and fast. We get to park in the valet parking, where the car stays for the few minutes we are there.
So it begins.
So it begins.
Settled In Our New Home
What a lovely place we will be living in for the next 7 weeks. It is such a beautiful and calming place to stay.
When we first arrived yesterday, we got the royal treatment and a tour first before going to our room. There are 29 rooms for families just like mine. The bedroooms have beds, dressers and chairs, but no TV and no tables, on purpose. They want us to mingle with others, so they have common areas where we all gather. The kitchen/dining room area is in the middle of the 2nd floor. It has four full kitchens in one room with tables and chairs for everyone. Many people can be preparing food or cleaning up without getting in each other's way. We have a section of one of the fridges and freezer, and a cupboard that locks with our room key. We have to provide our own food and do the preparation and cleanup. The kitchens have everything you can think of for cooking, and the counters hold "shared" items that are for all of us, like cookies someone makes, or a box of Florida oranges someone brought in. Food is only allowed in the kitchen area. No food is permitted in the other rooms.
There are many lounges or living areas with couches, tables, TVs, games, magazines and fireplaces. There is a fitness room, laundry room, computers rooms, library, meeting room (people have their craft projects set up in there to work on as time allows). As you walk around, you can't belive how many people actually live here, because there are so many little nooks for a person to go to. They also have ideas to do outside of the hospital/Lodge area.
A few more rules; you must wear shoes or socks, you must sign in and out if leaving, you must be quiet between 9:00pm and 7:00am near the bedrooms, and you must take care of everything to the best of your ability. Everyone is held to a high standard for keeping the Lodge beautiful.
They gave us a "suite", so we have a room with 2 beds, a room with 2 chairs, and a bathroom. It is nice for me if I want to stay up later than Justin. We love it here, and know we are mightily blessed.
When we first arrived yesterday, we got the royal treatment and a tour first before going to our room. There are 29 rooms for families just like mine. The bedroooms have beds, dressers and chairs, but no TV and no tables, on purpose. They want us to mingle with others, so they have common areas where we all gather. The kitchen/dining room area is in the middle of the 2nd floor. It has four full kitchens in one room with tables and chairs for everyone. Many people can be preparing food or cleaning up without getting in each other's way. We have a section of one of the fridges and freezer, and a cupboard that locks with our room key. We have to provide our own food and do the preparation and cleanup. The kitchens have everything you can think of for cooking, and the counters hold "shared" items that are for all of us, like cookies someone makes, or a box of Florida oranges someone brought in. Food is only allowed in the kitchen area. No food is permitted in the other rooms.
There are many lounges or living areas with couches, tables, TVs, games, magazines and fireplaces. There is a fitness room, laundry room, computers rooms, library, meeting room (people have their craft projects set up in there to work on as time allows). As you walk around, you can't belive how many people actually live here, because there are so many little nooks for a person to go to. They also have ideas to do outside of the hospital/Lodge area.
A few more rules; you must wear shoes or socks, you must sign in and out if leaving, you must be quiet between 9:00pm and 7:00am near the bedrooms, and you must take care of everything to the best of your ability. Everyone is held to a high standard for keeping the Lodge beautiful.
They gave us a "suite", so we have a room with 2 beds, a room with 2 chairs, and a bathroom. It is nice for me if I want to stay up later than Justin. We love it here, and know we are mightily blessed.
Tuesday, January 13, 2009
We MUST Know!
No matter how I figure it, staying in a hotel is going to break us. It will cost more than $1,000 for a hotel during his treatments, IF we get the hospital rate, IF the weather holds, IF he feels good enough to travel, and IF my car holds out. That thousand dollars is right off the top, before gas, food, rent, utilities, and all the other things that have to be paid, all while I am not working.
I just HAD to call the Hope Lodge, to see if there was ANY way he could get in. Even if it was only for a week or two, that would be better than nothing.
So I got on the phone and called them. Treatments start tomorrow and we just can't wait any longer. The not knowing is killing me. When I called, they were very kind, got me right to the person I needed. I tried to act casual, as if it was no big deal, instead of desperate like I felt. I asked what the status was on Justin getting to stay there, and how long was the waiting list, just in case?
She was so friendly, and acted surprised that I didn't already know. She told me he was in, there was a room waiting for him, ready now.
WHAT?!!! He's in?!!! Now?!!! Wow. I kept thanking her over and over and she just laughed. I told her there was a snowstorm coming overnight and she said it was OK to come today, a day early. The room was ready for both of us.
Praise God! He had everything planned and in place before we even knew we needed it.
So we are done packing and ready for our adventure, minus the hotel. Yes!
I just HAD to call the Hope Lodge, to see if there was ANY way he could get in. Even if it was only for a week or two, that would be better than nothing.
So I got on the phone and called them. Treatments start tomorrow and we just can't wait any longer. The not knowing is killing me. When I called, they were very kind, got me right to the person I needed. I tried to act casual, as if it was no big deal, instead of desperate like I felt. I asked what the status was on Justin getting to stay there, and how long was the waiting list, just in case?
She was so friendly, and acted surprised that I didn't already know. She told me he was in, there was a room waiting for him, ready now.
WHAT?!!! He's in?!!! Now?!!! Wow. I kept thanking her over and over and she just laughed. I told her there was a snowstorm coming overnight and she said it was OK to come today, a day early. The room was ready for both of us.
Praise God! He had everything planned and in place before we even knew we needed it.
So we are done packing and ready for our adventure, minus the hotel. Yes!
We MUST Know!
No matter how I figured it out, our cost for a hotel at the hospital rate would start at about $1,000 for Justin's stay. IF the weather holds, IF they give us the hospital rate, IF he feels good enough to travel, IF they give us a later time for his treatments, and IF my car hold out. We would try to go early Monday morning, spend Monday through Thursday nights at the hotel, and come home after his Friday treatments. I couldn't figure out how it was going to work financially. A thousand bucks right off the top, before gas, food, rent, utilities and other normal costs just didn't seem doable.
I HAD to call Hope Lodge, just to see if there was a chance we would get in. Even with a waiting list, a few weeks there for no cost would make a big difference.
So I got on the phone and called. They were really nice, got me to the person in charge, who got on the phone almost immediately. I tried to act like it didn't matter, and just casually asked if they knew if Justin could stay, and how long the waiting list looked IF he got in. I didn't want to seem desperate, even though I was.
She acted surprised that I called, like I should have been notified sooner. She said, "Oh, he's in, and we have a room ready now. You can come today if you would like."
What?!! Just like that and he is in?!! NOW?!! Wow. I thanked her over and over and she just laughed. I told her that due to a snowstorm coming in, we would love to come over a day early!
So we are throwing together our stuff and taking off!!
God is so good, He had plans for us even before we knew we needed them. Praise Him for his mercy, grace, and goodness!
I HAD to call Hope Lodge, just to see if there was a chance we would get in. Even with a waiting list, a few weeks there for no cost would make a big difference.
So I got on the phone and called. They were really nice, got me to the person in charge, who got on the phone almost immediately. I tried to act like it didn't matter, and just casually asked if they knew if Justin could stay, and how long the waiting list looked IF he got in. I didn't want to seem desperate, even though I was.
She acted surprised that I called, like I should have been notified sooner. She said, "Oh, he's in, and we have a room ready now. You can come today if you would like."
What?!! Just like that and he is in?!! NOW?!! Wow. I thanked her over and over and she just laughed. I told her that due to a snowstorm coming in, we would love to come over a day early!
So we are throwing together our stuff and taking off!!
God is so good, He had plans for us even before we knew we needed them. Praise Him for his mercy, grace, and goodness!
Sunday, January 11, 2009
Support From Everywhere
Everywhere we turn, people are there to support us. They always have a kind word, a prayer or a hug. It is so greatly needed! Being alone through this would be very difficult.
Thanks to EVERY PERSON who has stood in the gap for us; prayers, encouragement, hugs, cards, gifts and support. We feel such peace through this that we KNOW people are praying.
Thanks to my family and small group for going above and beyond for us. We love you so much.
Thanks to EVERY PERSON who has stood in the gap for us; prayers, encouragement, hugs, cards, gifts and support. We feel such peace through this that we KNOW people are praying.
Thanks to my family and small group for going above and beyond for us. We love you so much.
Friday, January 9, 2009
Vacation?
I'm officially off work until March 2. It is too early to tell what it is like not to have to go to work every day. I think I will like it (but not forever).
We are trying to plan what we need while in Iowa City. We still haven't heard from the Hope Lodge, so we are just getting basic things ready.
It is hard to believe this is really happening.
We are trying to plan what we need while in Iowa City. We still haven't heard from the Hope Lodge, so we are just getting basic things ready.
It is hard to believe this is really happening.
Wednesday, January 7, 2009
Getting Started
We left bright and early this morning and had no trouble with weather or traffic. It is quicker than 2 hours to the hospital, so we actually arrived early. Justin's only issue was, "when can I eat?"
The resident doctor came in first and asked Justin a bunch of questions about his general health and then wondered it we had questions? We asked a few, then we got to watch a video all about radiation treatments. It was actually short and informative. Then the nurse came in and went through a bunch of information with us, all about side effects, scheduling, diet, medications and what they would be doing to get ready for the treatments.
Justin's doctor came in and went through a few things, made sure we understood it all, had us sign some papers and talked to us about our lodging, yet to be determined. He was absolutely SURE we could stay at the Hope Lodge and said if they turned us down to let him know. We filled out an application. There is a waiting list; we just don't know how long. The doctor is so kind and assuring. It is very nice to feel everything is in good hands.
The nurse came back in and was to put in an IV for the CT scan dye. We told her he was hard to get an IV in, that there had been some issues the last time he was at the hospital. She tried several times and was very puzzled at why she couldn't get it in. After about 3 major tries, she went and got another nurse, who also tried many times and finally got it in, although she said it "wasn't very good".
Next came the people from the radiation area. They did a dental impression with some liquid goo. It hardened and was hooked to a part of the radiation unit. When Justin bites down into the impression, it fits him perfectly every time so they know they are radiating the right area. It is sort of like a GPS unit. Once that was done, they took him to make a mesh mask. A hard plastic mesh was soaked in warm water to soften it, then spread over his face. They pressed down all over his face to make a perfect image. It had to harden, then it will be made into a mask that will be attached into the table he is laying on it for the treatments. It will also hold his head still. It looks a little scary and a little confining, but that is the way it is done.
Then they were off to do the CT scan and the MRI. I waited in the lobby for a long time. Finally one of the nurses came out and said that his IV had failed and they had been working on it to get it in again. Four people and 12 tries later, it was finally put in by a resident doctor! Poor Justin. He is all bruised and sore, with holes all over. They finally got the CT scan done. An emergency came in and needed the MRI, so Justin was put on hold for that. They told us to go get some lunch, but to be very careful with the IV! We went up and got something to eat, to the bookstore for a new John Grisham book and then back to Radiation Oncology. We waited a long time, and again the nurses came out to let us know that there was a delay and they would see him as soon as possible. He finally got in about six hours after we arrived. The MRI went fine, he actually got some Valium and slept through most of it.
Justin may lose some hair in spots during the radiation, so we went to buy a Iowa Hawkeyes hat for him. He wears a bigger size and of course they didn't have any that fit. Then it was off to the Short Stop for a treat and we headed home.
Justin needs to be back at the hospital next Wednesday the 14th of January. They will go through a dry run to make sure everything works and then the radiaton will start on Thursday. It will be daily, Monday through Friday for 6 1/2 weeks. We asked for a late morning time so that we don't have to be up at the crack of dawn every day. They can usually accommodate preferences.
I sensed that Justin is feeling greatly relieved to finally begin treatments. He was happy and his usual teasing self today, and it was really wonderful to have the old Justin back.
The resident doctor came in first and asked Justin a bunch of questions about his general health and then wondered it we had questions? We asked a few, then we got to watch a video all about radiation treatments. It was actually short and informative. Then the nurse came in and went through a bunch of information with us, all about side effects, scheduling, diet, medications and what they would be doing to get ready for the treatments.
Justin's doctor came in and went through a few things, made sure we understood it all, had us sign some papers and talked to us about our lodging, yet to be determined. He was absolutely SURE we could stay at the Hope Lodge and said if they turned us down to let him know. We filled out an application. There is a waiting list; we just don't know how long. The doctor is so kind and assuring. It is very nice to feel everything is in good hands.
The nurse came back in and was to put in an IV for the CT scan dye. We told her he was hard to get an IV in, that there had been some issues the last time he was at the hospital. She tried several times and was very puzzled at why she couldn't get it in. After about 3 major tries, she went and got another nurse, who also tried many times and finally got it in, although she said it "wasn't very good".
Next came the people from the radiation area. They did a dental impression with some liquid goo. It hardened and was hooked to a part of the radiation unit. When Justin bites down into the impression, it fits him perfectly every time so they know they are radiating the right area. It is sort of like a GPS unit. Once that was done, they took him to make a mesh mask. A hard plastic mesh was soaked in warm water to soften it, then spread over his face. They pressed down all over his face to make a perfect image. It had to harden, then it will be made into a mask that will be attached into the table he is laying on it for the treatments. It will also hold his head still. It looks a little scary and a little confining, but that is the way it is done.
Then they were off to do the CT scan and the MRI. I waited in the lobby for a long time. Finally one of the nurses came out and said that his IV had failed and they had been working on it to get it in again. Four people and 12 tries later, it was finally put in by a resident doctor! Poor Justin. He is all bruised and sore, with holes all over. They finally got the CT scan done. An emergency came in and needed the MRI, so Justin was put on hold for that. They told us to go get some lunch, but to be very careful with the IV! We went up and got something to eat, to the bookstore for a new John Grisham book and then back to Radiation Oncology. We waited a long time, and again the nurses came out to let us know that there was a delay and they would see him as soon as possible. He finally got in about six hours after we arrived. The MRI went fine, he actually got some Valium and slept through most of it.
Justin may lose some hair in spots during the radiation, so we went to buy a Iowa Hawkeyes hat for him. He wears a bigger size and of course they didn't have any that fit. Then it was off to the Short Stop for a treat and we headed home.
Justin needs to be back at the hospital next Wednesday the 14th of January. They will go through a dry run to make sure everything works and then the radiaton will start on Thursday. It will be daily, Monday through Friday for 6 1/2 weeks. We asked for a late morning time so that we don't have to be up at the crack of dawn every day. They can usually accommodate preferences.
I sensed that Justin is feeling greatly relieved to finally begin treatments. He was happy and his usual teasing self today, and it was really wonderful to have the old Justin back.
Tuesday, January 6, 2009
Here We Go!
Early in the morning we will leave for the hospital to have the testing done so Justin will be able to start radiation treatments. He will be fasting all night, except a few crackers with his morning pills. He will have another MRI, a CT scan and all sorts of other stuff. By the time we get home tomorrow night, we should have much more info than we have tonight.
Justin is SO ready to begin. It isn't that he enjoys any of it. He just wants to get out of living in limbo. It will be nice to have something to DO.
Thanks to everyone for helping us with this "adventure". It has been a blessing to see how God provides
Justin is SO ready to begin. It isn't that he enjoys any of it. He just wants to get out of living in limbo. It will be nice to have something to DO.
Thanks to everyone for helping us with this "adventure". It has been a blessing to see how God provides
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