We have not heard from the hospital, the doctors, the nurses, the social worker or the Hope Lodge yet. The more time goes by, the more it looks as if we will indeed have to fund our own lodging.
Justin is having some of those crazy "blips" every day. Usually they are after-lunch pills and after-supper pills. We know they are coming from his brain connections not quite hitting right. Although they are not dangerous, they keep him from wanting to go out. It has been quite some time since he actually went out. We hope and pray that will change after the radiation.
Sunday, November 23, 2008
Friday, November 14, 2008
Another Setback, But Still Moving Forward
I called the nurse to get a real number on the treatment time, so that I could let my bosses know. I had heard 5 weeks and 6 weeks and 5-6 weeks. So I asked if she could tell me a more exact number of weeks. She said, "sure-it is actually 6 1/2 weeks." So I will be off work from January 12 to March 1. I won't get paid. The bosses will keep my insurance in place if I pay the premiums. Ugh.
At every visit to the cancer doctor, he and his nurse kept telling us that there was a place for us to stay for free at the hospital during radiation. That was one of the main reasons that I felt we could do this. They told us every time. I asked about it because we MUST know if this is really available for us or not. The nurse told me repeatedly that although there is a tiny chance we wouldn't get it, they had never had anyone turned away yet. They probably thought I was a pest, but I asked about it every time I called. The answer was always the same. It is for you, it is free, it is available.
Call me a skeptic, but I really wanted a little more guarantee than that. I had to call the social worker about what to keep track of for someday if Justin can get on disability, and so I brought it up with her to see if we could "sign up".
"Oh, no, that is not available for you. That place is just for people with stage 4 cancer going through radiation," she said sweetly.
"Dr What's his name and Nurse So-and-so told me that it was OK." I said.
"Well, they would like it to be, but it is sponsored by the American Cancer Society and they have strict regulations about who stays. Justin just isn't sick enough."
So now we are planning for over 6 weeks in a hotel. Thankfully the hospital rates are a lot lower than retail, so that helps. But it is a little overwhelming on paper.
I want to keep Justin happy and healthy. I don't want to have to worry him with unexpected things or "impossible" situations. So we really don't spend much time talking about HOW, just when and what.
I am encouraging Justin to write his book while we are there. He has an action/adventure novel in his head...he needs to put it on paper and get it published. It is very exciting and draws you in right away. I have read sections can't wait to read the whole thing, even though I know how it ends!
At every visit to the cancer doctor, he and his nurse kept telling us that there was a place for us to stay for free at the hospital during radiation. That was one of the main reasons that I felt we could do this. They told us every time. I asked about it because we MUST know if this is really available for us or not. The nurse told me repeatedly that although there is a tiny chance we wouldn't get it, they had never had anyone turned away yet. They probably thought I was a pest, but I asked about it every time I called. The answer was always the same. It is for you, it is free, it is available.
Call me a skeptic, but I really wanted a little more guarantee than that. I had to call the social worker about what to keep track of for someday if Justin can get on disability, and so I brought it up with her to see if we could "sign up".
"Oh, no, that is not available for you. That place is just for people with stage 4 cancer going through radiation," she said sweetly.
"Dr What's his name and Nurse So-and-so told me that it was OK." I said.
"Well, they would like it to be, but it is sponsored by the American Cancer Society and they have strict regulations about who stays. Justin just isn't sick enough."
So now we are planning for over 6 weeks in a hotel. Thankfully the hospital rates are a lot lower than retail, so that helps. But it is a little overwhelming on paper.
I want to keep Justin happy and healthy. I don't want to have to worry him with unexpected things or "impossible" situations. So we really don't spend much time talking about HOW, just when and what.
I am encouraging Justin to write his book while we are there. He has an action/adventure novel in his head...he needs to put it on paper and get it published. It is very exciting and draws you in right away. I have read sections can't wait to read the whole thing, even though I know how it ends!
Sunday, November 9, 2008
January Plans
Nurse Kelly called from Iowa City. Justin has an information meeting/appointment on January 7. They will do an MRI, CT scan, blood tests and other tests to be able to start radiation a few days later. We will get lots of information that day about what will happen, what to expect, and the schedule Justin will follow.
Justin is on two anti-seizure meds, but still has seizure activity. It looks different this time and feels different to him. Now it looks and feels like dizzy spells, but he is still out of it and he still isn't sure what is going on at the time. He has had a few close calls dropping things, losing his balance and even falling.
I asked about Disability, since Justin cannot work now, but he was turned down. He does not qualify. I was angry at first because I can't imagine how this does not qualify as a disability. An incurable brain tumor with the patient on radiation? But the social worker at the hospital said that a person must be disabled a whole year before they qualify. OK, I understand now. So it looks as if there will be no help in that direction.
We will be working to get ahead before the radiation starts. I am looking for a temporary 2nd job, gathering things to sell on ebay or Craigslist, and cutting every corner I can. Hopefully I can get enough to pay some of the bills while we are in Iowa City. My bosses had a meeting today, and one of the things on the agenda is how my employment and insurance will work through this leave of absence. I appreciate that they are willing to let me have the time off. That is one less thing to worry about.
Keep praying, Friend. We rely on your prayers and thank you for them.
Justin is on two anti-seizure meds, but still has seizure activity. It looks different this time and feels different to him. Now it looks and feels like dizzy spells, but he is still out of it and he still isn't sure what is going on at the time. He has had a few close calls dropping things, losing his balance and even falling.
I asked about Disability, since Justin cannot work now, but he was turned down. He does not qualify. I was angry at first because I can't imagine how this does not qualify as a disability. An incurable brain tumor with the patient on radiation? But the social worker at the hospital said that a person must be disabled a whole year before they qualify. OK, I understand now. So it looks as if there will be no help in that direction.
We will be working to get ahead before the radiation starts. I am looking for a temporary 2nd job, gathering things to sell on ebay or Craigslist, and cutting every corner I can. Hopefully I can get enough to pay some of the bills while we are in Iowa City. My bosses had a meeting today, and one of the things on the agenda is how my employment and insurance will work through this leave of absence. I appreciate that they are willing to let me have the time off. That is one less thing to worry about.
Keep praying, Friend. We rely on your prayers and thank you for them.
Saturday, November 1, 2008
A Decision Made
Justin requested that we look into beginning the radiation. He is tired of being around the house, waiting, waiting, waiting. He does not want to go on like this. At least the radiation will be something to DO, instead of nothing.
I called the nurse and she is making the arrangements to begin the appointments, testing and preliminaries for the radiation. It will begin after Christmas, 5 days a week for 5 or 6 weeks.
Pray for us. Humanly speaking, there is no way for us to do this. The hospital is 120 miles away, so daily trips are not practical. My car is not as roadworthy as it once was and needs some work and tires. Even though many of the medical treatments will be covered, there is still food, gas, as place to stay while there, and keeping up with the rent and bills on this end. I would love to be with him through the first round, which will mean no income. My bosses have assured me that I can take a leave of absence for this, and I can keep my insurance going, although I will have to pay the premiums. Realistically, we can't do it. But God is a God that works out problems like this. Pray that He will guide and provide for all that Justin needs.
My family, friends and church family are praying for absolute and complete healing for Justin from this tumor. Above all, this would be our first prayer. Thanks.
I called the nurse and she is making the arrangements to begin the appointments, testing and preliminaries for the radiation. It will begin after Christmas, 5 days a week for 5 or 6 weeks.
Pray for us. Humanly speaking, there is no way for us to do this. The hospital is 120 miles away, so daily trips are not practical. My car is not as roadworthy as it once was and needs some work and tires. Even though many of the medical treatments will be covered, there is still food, gas, as place to stay while there, and keeping up with the rent and bills on this end. I would love to be with him through the first round, which will mean no income. My bosses have assured me that I can take a leave of absence for this, and I can keep my insurance going, although I will have to pay the premiums. Realistically, we can't do it. But God is a God that works out problems like this. Pray that He will guide and provide for all that Justin needs.
My family, friends and church family are praying for absolute and complete healing for Justin from this tumor. Above all, this would be our first prayer. Thanks.
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