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.
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