Monday, July 20, 2009
Another MRI
On Wednesday last week, we went to Iowa City for another MRI. Justin always sees the oncology team afterward. They had a good report--the cancer is "stable". The doctor said instead of the normal 2 months between MRIs, it would be 3 months this time. If the MRI continues to show the cancer is stable in 3 months, then it will be 5 or 6 months the next time. This is really good news! Since Justin is now getting a paycheck, we had lunch at the Red Lobster to celebrate!
Saturday, July 18, 2009
Back In The Saddle Again
I took a little break from blogging and I'm back! Since Justin is doing so well, he will not be the only person I blog about now. I will update about him as needed, but will also write about the happenings in my life and those around me.
However, just because I haven't blogged about him for awhile, I will catch you up.
Justin enjoyed a month-long stay in Atlanta. He came back renewed and refreshed. And then he got a job! He is now earning money again! Though it is not ministry related, his job as a security guard in a large medical clinic in the suburbs is a pretty good fit for now. He has a lot of down time at a desk, with frequent trips around to check doors, give directions, and make sure all is well. He has time with lots of people in the clinic, but even more time after they are all gone for the evening. He can't be on a computer, use an iPod, talk on the phone or spend a lot of time talking to people, but he can read. Since he is a voracious reader, he has been going through books like crazy. He can do an action/adventure novel in about 2 shifts. Non-fiction takes a little more time, depending on the subject. So he is rapidly catching up on all those books he hoped to read "someday." And the local library always seems to have something on hold for him.
Having a check coming in is a blessing! He decided to use his first check for a little fun before buckling down, so he bought a netbook (a small laptop computer). It is just what he needs for checking email, working on his book and playing music. Too bad he can't take it to work...
It is good to have Justin back!
Friday, May 15, 2009
No Wonder We Are In A Pickle
People wonder why this world is going downhill so fast. I have evidence of that in my hand. I just got a bill from the hospital where we went to have Justin's Rx rewritten. It is for $164. They accidentally sent it to me instead of Justin's insurance. So it IS a scam...charge our insurance company $164 twelve times a year, just to have a prescription rewritten. I am seriously thinking of contacting the higher ups in the insurance company to let them know what is happening. Just think what would happen if we got to use insurance money for things that were NEEDED. It just might change the world a little bit.
Justin has been in Atlanta for a few weeks now and is having a great time. I am not sure yet when he will return, but no one is in a hurry. We are all thrilled he is enjoying a vacation.
Justin has been in Atlanta for a few weeks now and is having a great time. I am not sure yet when he will return, but no one is in a hurry. We are all thrilled he is enjoying a vacation.
Tuesday, May 5, 2009
Vacation Time
Justin arrived in Atlanta late Monday night, after a normal flight. He is so glad to be there and having a great time. There is a lot to do there, and lots of family to see.
I am feeling relief that he is able to do this. He needs some fun, adventure and life, now! He has been through so much this past year. I want him to enjoy this time when he is healthy. I'm so thankful he got this opportunity.
I am feeling relief that he is able to do this. He needs some fun, adventure and life, now! He has been through so much this past year. I want him to enjoy this time when he is healthy. I'm so thankful he got this opportunity.
Saturday, May 2, 2009
Worries and Woes
Sorry I have not posted much lately. My job has changed and I have very little energy at the end of the day. I'm glad to have a job, but many times I wish it was not on my feet for 8 hours a day.
I have been so thrilled that Justin is doing better. Getting the radiation was the best thing we could have done for him and I have no regrets. Seeing him happy and mostly healthy has been such a blessing!
But just like most things, there is bad that goes with the good. We have had nothing but trouble getting Justin's meds. His hospital is in Iowa City, but since he lives in the county he does, his insurance makes him pick up his meds closer to home. For us that is Broadlawns. I know that the people who work there are just like everyone else--there are those that bend over backward to help, and those who are just putting in their time. But the SYSTEM there absolutely stinks. It is a joke trying to simply go and pick up your next month's medication.
When I need medicine, I just get on the phone, call Walgreens, and two hours later, I can pick them up. But for Justin, it is a different story. Broadlawns has a "closed pharmacy." The only meds going out of that place are prescriptions the Broadlawns doctors write. So when Justin gets a prescription for his meds from his oncologist (for a year's supply), he has to take that Rx in to have one of their docs rewrite it. They say it is at the doctor's discretion how many months to write it for, so they do one month at a time. So, every time he goes in there, he has to sign in at the registration, WAIT for his number, get a folder of information, and then WAIT in the clinic, then WAIT for the nurse to do blood pressure and temps, weight, etc...then WAIT for the doctor to come in, so we can explain he is only there for an Rx, then WAIT for the doctor to write it, then WAIT for the nurse to bring it, then go to the pharmacy downstairs, pick a number, WAIT to be called, give them the Rx, WAIT while they fill it, then WAIT in line to pick it up. Usually it takes four hours or more. Every month. I can't take that much time off work, so it is a huge hassle.
Now that Justin is going to Atlanta, he needs another month's supply, or at least get the OK for me to pick it up later this month and mail it to him. Great. So we have to go through this all again. It's Friday, he leaves Monday and I don't really want to go there. I. Really. Don't. Want. To. Do. This. Today.
I got to thinking about it and got really mad. Justin's radiology oncologist writes a prescription for two meds for a year, and some little resident has the power to say we can't do it that way?!!! So after working all day, I picked up Justin and we made a little trip down there. Being the first of the month, and with the "real scary" swine flu craziness, I knew it would be horrible. And I hadn't taken the time to eat supper, and my feet hurt, and I didn't want to do this.
Try as I might, I have never understood how this system works. But tonight it suddenly hit me. If Justin has to go monthly to pick up his meds, they can charge his insurance company FOR EVERY VISIT. Ahh, now it all makes sense. And it also makes me mad that they are using me and my kid in this game. So I went, ready to do battle. I told Justin on the way in, that I was mad, tired, hungry, frustrated and absolutely ready for war. I was going to sit down with the doctor and make him prove to me medically that Justin needs to come in monthly, I was also taking names. I had some paper to write our experience so that I could write a letter to the insurance company and the hospital higher-ups. BUT, I also wanted to be an example to my kid of how a person fights nicely, fairly and with honor, not rage. Hmm.
We walked in the door and the clinic lobby was empty. Empty. They signed him right in and got him back to the waiting area. We were called in less than 5 minutes....all the while thinking, "what's the catch?" The nurse quickly went through her stuff, and in less than 5 minutes the doctor came in. I very nicely explained why we were there. He looked so tired. I felt sorry for him--he probably feels like I do. He really only asked one question-"are they doing blood work to make sure your liver is handling this much anti seizure medication?" "Yes, sir." He said, "I would feel good doing a 6 month supply, would that be OK?" "Yes, sir."
Five minutes later, we we had the Rx for 6 months in our hands and got to the empty (!) pharmacy. I explained about Justin's trip and we would like to know the soonest date we can pick his meds up. Like most insurances, they only let him get one month at a time. But the pharmacist said, "I can get you next month's now." And she did, in less than 10 minutes.
We were out of there in less than an hour! Amazing. Thank You, Lord.
Do you remember when the dentist in Iowa City did my root canal and broke my ceramic crown and couldn't fix it? When I got home from this whole thing tonight I was feeling pretty good. But in the mail was my final bill from my regular dentist (who fixed it for only $1,200!) and the insurance companies. I owe $473 for the privilege of having someone break my tooth. Ugh. This junk never stops. So Monday I will be trying to juggle work and calling all over to see if there is anything else I can do to get this bill lowered or paid, say, by the dentist who broke it? It might as well be a million bucks. I'm having trouble keeping my head above water as it is, and have made virtually no progress from having seven weeks off. Nothing is caught up. I was hoping my tax refund would help, but my federal refund was exactly-to the dollar-what I owed the state. Grrr. I think they have a system, too.
So the good thing is, I have not used credit cards or borrowed from anyone for over a year. I am not adding to what little debt I have. The bad news is, I am really tired of never quite keeping up with the regular bills. It is a treadmill that has no shut-off switch. There is no light at the end of the tunnel, no way to catch up unless I take on a second job, which I have NO energy to do. Please pray for me, I need some encouragement!
I have been so thrilled that Justin is doing better. Getting the radiation was the best thing we could have done for him and I have no regrets. Seeing him happy and mostly healthy has been such a blessing!
But just like most things, there is bad that goes with the good. We have had nothing but trouble getting Justin's meds. His hospital is in Iowa City, but since he lives in the county he does, his insurance makes him pick up his meds closer to home. For us that is Broadlawns. I know that the people who work there are just like everyone else--there are those that bend over backward to help, and those who are just putting in their time. But the SYSTEM there absolutely stinks. It is a joke trying to simply go and pick up your next month's medication.
When I need medicine, I just get on the phone, call Walgreens, and two hours later, I can pick them up. But for Justin, it is a different story. Broadlawns has a "closed pharmacy." The only meds going out of that place are prescriptions the Broadlawns doctors write. So when Justin gets a prescription for his meds from his oncologist (for a year's supply), he has to take that Rx in to have one of their docs rewrite it. They say it is at the doctor's discretion how many months to write it for, so they do one month at a time. So, every time he goes in there, he has to sign in at the registration, WAIT for his number, get a folder of information, and then WAIT in the clinic, then WAIT for the nurse to do blood pressure and temps, weight, etc...then WAIT for the doctor to come in, so we can explain he is only there for an Rx, then WAIT for the doctor to write it, then WAIT for the nurse to bring it, then go to the pharmacy downstairs, pick a number, WAIT to be called, give them the Rx, WAIT while they fill it, then WAIT in line to pick it up. Usually it takes four hours or more. Every month. I can't take that much time off work, so it is a huge hassle.
Now that Justin is going to Atlanta, he needs another month's supply, or at least get the OK for me to pick it up later this month and mail it to him. Great. So we have to go through this all again. It's Friday, he leaves Monday and I don't really want to go there. I. Really. Don't. Want. To. Do. This. Today.
I got to thinking about it and got really mad. Justin's radiology oncologist writes a prescription for two meds for a year, and some little resident has the power to say we can't do it that way?!!! So after working all day, I picked up Justin and we made a little trip down there. Being the first of the month, and with the "real scary" swine flu craziness, I knew it would be horrible. And I hadn't taken the time to eat supper, and my feet hurt, and I didn't want to do this.
Try as I might, I have never understood how this system works. But tonight it suddenly hit me. If Justin has to go monthly to pick up his meds, they can charge his insurance company FOR EVERY VISIT. Ahh, now it all makes sense. And it also makes me mad that they are using me and my kid in this game. So I went, ready to do battle. I told Justin on the way in, that I was mad, tired, hungry, frustrated and absolutely ready for war. I was going to sit down with the doctor and make him prove to me medically that Justin needs to come in monthly, I was also taking names. I had some paper to write our experience so that I could write a letter to the insurance company and the hospital higher-ups. BUT, I also wanted to be an example to my kid of how a person fights nicely, fairly and with honor, not rage. Hmm.
We walked in the door and the clinic lobby was empty. Empty. They signed him right in and got him back to the waiting area. We were called in less than 5 minutes....all the while thinking, "what's the catch?" The nurse quickly went through her stuff, and in less than 5 minutes the doctor came in. I very nicely explained why we were there. He looked so tired. I felt sorry for him--he probably feels like I do. He really only asked one question-"are they doing blood work to make sure your liver is handling this much anti seizure medication?" "Yes, sir." He said, "I would feel good doing a 6 month supply, would that be OK?" "Yes, sir."
Five minutes later, we we had the Rx for 6 months in our hands and got to the empty (!) pharmacy. I explained about Justin's trip and we would like to know the soonest date we can pick his meds up. Like most insurances, they only let him get one month at a time. But the pharmacist said, "I can get you next month's now." And she did, in less than 10 minutes.
We were out of there in less than an hour! Amazing. Thank You, Lord.
Do you remember when the dentist in Iowa City did my root canal and broke my ceramic crown and couldn't fix it? When I got home from this whole thing tonight I was feeling pretty good. But in the mail was my final bill from my regular dentist (who fixed it for only $1,200!) and the insurance companies. I owe $473 for the privilege of having someone break my tooth. Ugh. This junk never stops. So Monday I will be trying to juggle work and calling all over to see if there is anything else I can do to get this bill lowered or paid, say, by the dentist who broke it? It might as well be a million bucks. I'm having trouble keeping my head above water as it is, and have made virtually no progress from having seven weeks off. Nothing is caught up. I was hoping my tax refund would help, but my federal refund was exactly-to the dollar-what I owed the state. Grrr. I think they have a system, too.
So the good thing is, I have not used credit cards or borrowed from anyone for over a year. I am not adding to what little debt I have. The bad news is, I am really tired of never quite keeping up with the regular bills. It is a treadmill that has no shut-off switch. There is no light at the end of the tunnel, no way to catch up unless I take on a second job, which I have NO energy to do. Please pray for me, I need some encouragement!
Thursday, April 30, 2009
Travel Plans
Justin has been busy online, looking for great travel deals. He finally found a flight he couldn't pass up--here to Orlando, $29. Yep. Of course they nickel and dime you to death with fees, but even with the taxes and the other "dings", it was still only $59. A bargain. So Monday, Justin will be flying to Orlando, and Josh will pick him up there for a 6 or 7 hour car ride to ATL. Not the best way to do things, but certainly the cheapest. It would have been several hundred more dollars for a direct flight, which we really can't do right now.
Justin got out his shorts, summer clothes, and swim trunks, and he will be living a life of leisure for a month or so down in the south. I am so excited for him....just wish I could go, too.
Justin got out his shorts, summer clothes, and swim trunks, and he will be living a life of leisure for a month or so down in the south. I am so excited for him....just wish I could go, too.
Wednesday, April 15, 2009
Home
Our trip to Iowa City this morning was a good one. No rain, snow, dark, road construction or detours. We made great time and had some good conversation. We have done this same trip many times, so we know about how much time we have left based on where we are on the Interstate.
Once at the hospital, we went downstairs for Justin's MRI. He used to hate them and wanted Valium to relax. But since losing 60 lbs, the tube isn't so tight anymore. Now his worry is the IV. For some reason, there are very few people that can get an IV into Justin without numerous pokes. He gets stuck many times and gets some "poke and twists" or double pokes. All the while, the person is apologizing and wondering how they lost their touch. He has bruises on his arms and hands for days afterward. He is really sick of it.
Today's MRI went well, except for the IV, then we went to the cancer center for the meeting with the team. There was a resident doctor there to meet, who was new. She went through ALL the neurological tests that she could do, instead of the three or four the regular doctors do. And she had braces on her teeth! Justin thought it was funny that his doc has braces. She was very thorough and kind. She had a med student with her, who watched. That is normal.
She showed us a frame of the MRI from today. Then she pulled up the one from April. It was amazing! Even I could see the difference in the size of the tumor. Actually, what we thought was tumor is actually edema (swelling). Our first look at his brain in April showed this swelling area about the size of a pear. Now it is more like a golf ball. Of course we are only seeing a "slice" of his brain in both pics. But it was very noticeable, so no matter what it is...it is smaller.
Then the main doc came in and joined us. He went through a few tests and explained everything again. We were able to ask some questions. Justin wanted to know if he would be able to ride roller coasters when on his trip to Atlanta. The doctor looked sorry, but said no. He said there is too much going on in Justin's head to do risky stuff like boxing, football, bungee jumping, roller coasters, etc. Justin laughed and said in his future, he would be the one at the amusement park sitting with the baby and getting his pictures taken with the princesses while mommy rides the wild rides with the other kids. He sees the humor in it. Not being able to ride a roller coaster is not a big deal.
We talked about the AVM (the cluster of veins and vessels that could bleed) as well as the thyroid. Justin's doctor did not agree with the endocrinologist and wants Justin seen anyway, so that will be in July during the next appointment and MRI.
I asked a lot about exactly what type of tumor it is. I see information on the computer all the time and it helps to know more of what I am looking for. I was wondering about cells called astrocytes. Does Justin's cancer include these or not? He said that although there are probably a few, certainly there are not enough to do a count. As long as there aren't any to do a count, it is grade II. Once there are astrocytes, it may be changing and getting more aggressive. Then it might be changed to grade III cancer. Once there are many agressive astrocytes, it will be grade IV. Good to know.
Off we went to the Hope Lodge to reconnect with our friends there. It was great, and they decided that we will grill out in July when we are there next time. Justin was also promised tickets on the field at one of the big Iowa football games...so we will be able to make some plans at that time.
Then we went to eat at Old Chicago Pizza, perhaps the worst meal I have eaten out in a long, long time. It made McDonalds look like a 5 star. Ugh. There is only one thing worse than horrible food in a restarant, and that is having to pay for the privelege! Ugh. It was recommended by someone and we tried it. I am sure that every single place in town has better food...we will be much more selective next time.
We didn't do the mall, or walking or anything else, just came home. It's good to be here.
Once at the hospital, we went downstairs for Justin's MRI. He used to hate them and wanted Valium to relax. But since losing 60 lbs, the tube isn't so tight anymore. Now his worry is the IV. For some reason, there are very few people that can get an IV into Justin without numerous pokes. He gets stuck many times and gets some "poke and twists" or double pokes. All the while, the person is apologizing and wondering how they lost their touch. He has bruises on his arms and hands for days afterward. He is really sick of it.
Today's MRI went well, except for the IV, then we went to the cancer center for the meeting with the team. There was a resident doctor there to meet, who was new. She went through ALL the neurological tests that she could do, instead of the three or four the regular doctors do. And she had braces on her teeth! Justin thought it was funny that his doc has braces. She was very thorough and kind. She had a med student with her, who watched. That is normal.
She showed us a frame of the MRI from today. Then she pulled up the one from April. It was amazing! Even I could see the difference in the size of the tumor. Actually, what we thought was tumor is actually edema (swelling). Our first look at his brain in April showed this swelling area about the size of a pear. Now it is more like a golf ball. Of course we are only seeing a "slice" of his brain in both pics. But it was very noticeable, so no matter what it is...it is smaller.
Then the main doc came in and joined us. He went through a few tests and explained everything again. We were able to ask some questions. Justin wanted to know if he would be able to ride roller coasters when on his trip to Atlanta. The doctor looked sorry, but said no. He said there is too much going on in Justin's head to do risky stuff like boxing, football, bungee jumping, roller coasters, etc. Justin laughed and said in his future, he would be the one at the amusement park sitting with the baby and getting his pictures taken with the princesses while mommy rides the wild rides with the other kids. He sees the humor in it. Not being able to ride a roller coaster is not a big deal.
We talked about the AVM (the cluster of veins and vessels that could bleed) as well as the thyroid. Justin's doctor did not agree with the endocrinologist and wants Justin seen anyway, so that will be in July during the next appointment and MRI.
I asked a lot about exactly what type of tumor it is. I see information on the computer all the time and it helps to know more of what I am looking for. I was wondering about cells called astrocytes. Does Justin's cancer include these or not? He said that although there are probably a few, certainly there are not enough to do a count. As long as there aren't any to do a count, it is grade II. Once there are astrocytes, it may be changing and getting more aggressive. Then it might be changed to grade III cancer. Once there are many agressive astrocytes, it will be grade IV. Good to know.
Off we went to the Hope Lodge to reconnect with our friends there. It was great, and they decided that we will grill out in July when we are there next time. Justin was also promised tickets on the field at one of the big Iowa football games...so we will be able to make some plans at that time.
Then we went to eat at Old Chicago Pizza, perhaps the worst meal I have eaten out in a long, long time. It made McDonalds look like a 5 star. Ugh. There is only one thing worse than horrible food in a restarant, and that is having to pay for the privelege! Ugh. It was recommended by someone and we tried it. I am sure that every single place in town has better food...we will be much more selective next time.
We didn't do the mall, or walking or anything else, just came home. It's good to be here.
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