Archive for January, 2009

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While there’s still time

January 30, 2009

After trying for several days, I finally found (or rather – made) the time to call home and talk to dad for a brief spell. It was during a lunch break on the ship. I walked out to my car and sat with the door open, letting the breeze cool me from the warm sun.

As we talked, he asked me if the ship was going out again anytime soon. He sounded almost confused as he asked, a certain fluttering tone about his voice made it hard to accept this was the same man who raised me. I kept my focus as best I could and made small talk for a few minutes.

His voice started to crackle and become faint after a short while. He was about to hand off the phone to mom again when I stopped him and asked for him to listen just a little bit more.

Me: “I know that time is against us now.”
Him: “Yeah, you’ve got that right…”
Me: “I just wanted to say that I hope I have done things to make you proud, and that I hope I keep doing things to make you proud, and that I love you and I hope I can see you again soon.”
Him: “That sounds good.”

He then passed off the phone to mom, barely able to mutter those last words to me. Later she told me that dad tends to lose his voice on the phone when he’s talking to someone he loves. While he never said it back, I know he does.

After I hung up I couldn’t hold back the tears any longer.

In my 27 years, that was the first time I can remember ever telling dad that I loved him. After going over it so many times in my head and finally listening to my friend Adrienne’s advice, I told him what I needed to while there was still time.

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Getting worse

January 29, 2009

This evening Bill was uncharacteristically tired. He sat in his recliner and slept more than normal, ignoring much of the recorded television show playing before him.

As the evening hours passed, Bill would occasionally rub his forehead with his eyes closed. He told Pat that his eyes are really bothering him, shaking his head from time to time in response to their changing condition. He said that it was not from a headache.

He had been trying to stay up later this evening. While he didn’t indicate his exact reason, we suspect it might be because I told mom I wanted to talk to him on the phone. There are things I want to say to him while I still have the chance. With work lasting as long as it has lately, getting home at a decent hour to make that phone call has been nearly impossible.

In order to use the bathroom, he had to be taken in a wheelchair. Once he made his way back to the living room and into his recliner Pat sat in his wheelchair to be at the same level. Pat spent the majority of the night sitting by him, holding his hand. It was not long until he was ready to make his way to bed.

We’re wondering if maybe this is the beginning of the end. I really hope not.

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Scheduled visit

January 20, 2009

Today the doctor’s visit didn’t keep Bill waiting very long. The first question from the doctor was whether or not the chemotherapy had arrived as of yet. Pat informed him that Medco sent her a letter stating that the doctor’s office still needed to call them and authorize the medication before it would be sent to them. At that point Bill informed the doctor that he would not be seeking treatment, knowing how grave his situation is. The doctor was very surprised. Unsure whether or not Bill was being sincere, the doctor confirmed the decision with Pat. She told him that it was his life and his choice. Reassuring Bill that treatment would prolong his life, Bill still refused knowing it would only extend his outlook by a few months. The doctor accepted the decision, reluctantly I’m sure, and asked if there was anything he could do for them.

While Bill was not in any pain for the time being, the potential for it exists further along the line. Pat asked about pain medication when that time comes and the doctor said he would oblige. The doctor wants to start weening Bill off the Decadron medication to see if that helps with his muscle loss. If there are changes in his behavior then they will continue the regular dosage amount.

The doctor’s visit did not last long once Bill’s decision had been communicated. After that, Bill was in the mood for some McDonald’s and Pat happily took him to get some. He was able to walk in under his own power but by the time he had gotten home and finished eating, he was exhausted and slept for a better portion of the afternoon.

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Priorities

January 16, 2009

Bill’s brother Gary made his way back up to Dayton this morning.

Once afternoon rolled around, Osceola Cancer Center called and asked to have Bill in for his treatment. A previous message for them indicating that the radiation therapy was being declined by Bill himself never got through, it seems. This came four days after they requested that the MRI files be rushed to the center so they could examine them more closely. What happened to expedient care?

As time goes on it seems like less and less of this entire process is progress like one would expect, or even hope, it should.

This evening was spent like many others – sitting in his chair, reclined to comfort, watching TV, and falling asleep periodically. After a 45 minute stint of being asleep he decided that it was time for bed. His first attempt to stand up didn’t go over too well. He felt weak in his right leg with a shaky knee and was forced to sit back down just as fast as he got up. After sitting down for a couple more minutes, he tried again and was successful. Pat followed him into the bedroom to make sure he got there okay.

It wasn’t until later that Pat discovered the wheelchair she has at the house is too wide to navigate our doorways so it’s a good thing it wasn’t necessary.

Tuesday is the next appointment with the oncologist. He is under the impression that dad has been undergoing treatment but is unaware of the decision not to. Considering the chemotherapy drugs probably wouldn’t have even showed up by then, much less the radiation therapy, it’s going to be interesting what the oncologist has to say.

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Three weeks later

January 14, 2009

Medco called the house today to request some additional information for Bill’s chemotherapy prescription. The person on the other end of the line said that the fax they had just received was smeared, making his doctor’s phone number illegible. At this point Bill was put on the phone to confirm with them that the prescription was no longer necessary and to cancel it.

The fax Medco received was dated 12/23/08.

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There are no words

January 10, 2009

This morning Pat and Bill had a serious discussion his treatment. With all of the waiting around, the high costs, the likelihood that treatment will not help, and the lack of a true cure, Bill has decided that he does not want to begin any sort of treatment.

The chemotherapy drugs still have yet to show up in the mail. Phone calls to Medco and others have yielded no results in locating them and has turned into the avoidance of responsibility or blame.

Accepting the diagnosis was the hardest thing to do. This was by far the second hardest.

From here on out, it’s all about quality of life. We can only hope that the one-year timeline given by the oncologist lasts longer.

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Won’t be needing these anymore

January 6, 2009

This morning dad and I took a trip to Disney World’s Animal Kingdom. Since he wouldn’t be working for Disney any more, he wanted to turn his costumes in. In this pile were about ten Disney Security shirts, a few pairs of pants, two rain coats, a belt, and a security hat. We loaded up the car at about 6:15am and made our way over.

Dad was acting about as normal as he could. Since my time home and seeing his new behaviors, he had gotten progressively slower with his movements. Getting in and out of mom’s sedan was a chore which required coordination and the use of the overhead handle.

The Cintas uniform delivery guy was a little late showing up at around 6:50, about twenty minutes after his normal time. There was a dense fog that morning so that likely explains it. We quietly sat in the car, both drowsy from getting up so early. Once he arrived we promptly returned the costume items. While dad made his way inside the building to use the restroom, I wandered into the locker area where he used to change for work every day. It was a vast building that seemed more like a warehouse with carpet; largely unused was its space.

We picked up mom and made our way to The Cracker Barrel for an early breakfast.