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.

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

Christmas Day

Christmas Day was not easy on Justin. He did not feel very well all day. In his case, it isn't the flu or a cold, but unwanted brain activity that gives him no rest. He went back to bed many times, only to be up a short time later, unable to sleep. It is very frustrating to him to have to fight with sleeplessness while in bed, and tiredness while up. He has to sleep in a certain position due to his brain complaining of discomfort if he is on one side, or his enlarged thyroid cutting off his airway if he is on the other. He has not been able to sleep well for almost a year.

We had family over for Christmas. I could tell that Justin was glad to see them, but I could also see that he was miserable from not feeling well. He tried to sleep while they were here but couldn't, and tried to stay up and visit but was distracted by his brain processing several things at once. It gives him messages like he is two places at the same time. Part of his brain is present where he is, and is aware of what is going on around him, just like most people. But he has an added element where he is also getting messages as if he is watching (or playing in) a football game, riding a roller coaster, doing other activities, or even weird stuff that might happen in a nightmare. It is highly distracting, especially when the house is already full of people and activities, the TV or radio is on and there is noise everywhere.

We chose not to do gifts this year due to the upcoming treatments, so that was strange, too. You always hear people say, "it isn't about gifts anyway", but when it is you, it feels awful. Justin has no income, so he didn't have a choice. But it was really touching when he went in his room and brought out some of his books to give to his aunt and grandma. Giving gifts at Christmas is just so natural and normal that he couldn't help himself. That was really good to see.

I am going to start posting more often, so you will want to check here more from now on. Things are progressing quickly. I only have 8 more days of work until I am off for 7 weeks. God will have to provide for this, as it is not humanly possible to do it alone.

We are still praying for total healing for Justin. But we want to pray that the radiation works to shrink the tumor and gets rid of all the unwanted brain "blips" that he has so he can live a more normal life.

It will be an adventure seeing what God is about to do...stay tuned for His plan!

A Month To Go

Although we will not actually know the exact date Justin's radiation starts, it should be about a month from now. We won't know the start date until the 7th of January. He is looking forward to it, so he can get back to some sort of normal life.

God sent a wonderful blessing last week...he provided a house for us to live in for at least a year. The house is big and has plenty of room for Justin, his brother, sister-in-law, nephew and myself. We can all help each other as we go through this time in our lives. We are excited and thrilled to have such a great place to live. We are also excited that we all had this great idea to live in one big household. People in many other cultures to it all the time...why not us? Each of us has something to give, and each of us can use the help of others. I am glad that when we are out of town for the radiation, the house will not be empty at all. We will be able to come HOME to family, friends, hot meals and our own beds.

No News ISN'T Good News

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.

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!

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.