August 27, 2009 11:10 AM

Well, here goes for the last couple of days:

John is very weak and down to 143 pounds and has virtually no energy, all to be expected. But in spite of the expectations, it is hard to witness and hard to handle. I have no idea how someone who is alone could deal with this disease. I am just grateful I am here and able to care for him, a good man.

Also, in spite of the information we were given, that he would not even be nauseous, let alone throw up, he has been doing some of that more than he wants to. It does cause havoc when he can't keep his meds down, gets dehydrated, takes insulin and his blood sugar goes crazy. I know a lot of you have either gone through this yourself or had a family member or friend go through it, but I have not. Not one on one type of care. You think and feel you have things in control and they are going well, but then the rug is pulled out from under you.

He still has a positive attitude, but is quiet and doesn't say too much when he feels this badly.

For the last few days, he has felt like seeing company and that has been good for him. But, now today, it is obvious he will be in bed most of the day and getting food and liquids down him will be difficult. I just hope he keeps out of the ER, which is where this is heading, when he can't eat.

Tomorrow he has his third chemo treatment and then he as one more on September 4th, before we can get the scan to see how the treatment is working for him.

An important thing that I have to mention: Some good people in California and Utah have puts their heads together and co-ordinated a mass mailing of greeting cards, so our mailbox was jammed packed Tuesday with so many cards it literally took John one hour to go through them. I think he absorbed them slowly, so each and every word could have a healing effect on him. Then he would stop and look at me and make some sweet comment about the person or family that took the time to send him (us) good wishes. He really enjoyed the cards from the little kids.... how he loves them. He was buoyed up throughout the day.

Then, I read them alone. Overwhelmed with thankfulness for each and every one of you. I suspect the ones that promptly and promoted this massive act of kindness, you know who you are. It was so nice to hear and read words from so many good friends from Paradise, Chico and Sacramento area. It kind of brought us up to date on some of you, which was fun. It certainly did bring some joy into our home. We are leaving the cards out, to share with whomever wants to see them.

Thank you, again, for the ongoing, continual care and service you give the Miles family. We love you all.

August 23, 2009 10:15 P.M

I need to update tonight, while things are clear in my mind. Things happen so fast, it is hard to keep up with it all.

Last Friday I had to take John in to the doctor, because he was not acting right, again. He has been vomiting a lot, not eating and not clear headed. He is down to 143 pounds. They put an IV in and gave him a 3 hour drip. The next day he was a ton better. His appetite was improved and spirits were high. When he woke up, he asked for french toast, which I gladly made him.

It looks like the nausea has settled down and he is doing better. But today, he took a fall and scraped his arm. Nothing serious, but it just shows how weak and unstable he is. tomorrow I am going to get him a walker and I don't dare leave him alone at all, so will be leaning on friends and family to help keep an eye on him, while I fulfill some important business obligations.

This Friday he is scheduled for his 3rd chemo treatment and let's hope it goes a little bit smother than last time. Then, we have 2 more weeks before he can have another scan to se if the treatment is doing any good.

Continued thanks for many cards, emails, prayers and help in our behalf.

August 20, 2009 2:20 PM

Here is the latest from the emergency room visit from a 10 hour day yesterday:

As you may have guessed, the cancer specialist was on alert that due to the bazaar behavior for almost two days, that the cancer might have spread to the brain and ordered a brain scan. Great news that no signs of cancer have showed up there. A good thing to have checked.

But, John was told from the very onset of this cancer to not let his pain level get to bad, before he takes morphine as it can't work from arear, so to speak. So, "you must take something every 2-3 hours in order to keep the pain under control." But, what he didn't know is, when the pain was out of control and he was hospitalized for 8 days, they had to put pain patches on him, which distributes pain meds constantly. Then, if for some reason the paid "breaks through" the patch, meaning the patch release was not sufficient enough to control the pain, THEN he could take one of the morphine. Well, he didn't get that straight and was still taking pills every 2-3 hours, until he was getting confused and then took them when he thought he hadn't, took them because he thought it was time, etc, etc, even when he was not in pain, but thought he was controlling it by taking them. Well, you know what happened from here. After 24 hours, his mental state returned and I can actually hold a conversation with him.

We came home and he went right to bed, but started to throw up every hour and couldn't keep anything down or get rest. Even though this chemo is not suppose to even make you nauseated, let alone throw up, he was. So, today I got a Rx for nausea and as of 11:30, he hasn't been throwing up, just sleeping. I'm glad he is making up for the lost sleep he has had.

For now, we're just holding back from visitors, until I know he doesn't feel nauseated or throwing up. I make certain he is getting your messages, no matter what form they come in.

Thank you for keeping up with us.

August 19, 2009 9:48 AM

I just spoke to the doctor's office and they want me to take him to the E.R. where they can do a "head scan" and see if something is going on there, to cause his behaviors. They will report back to the cancer center with results.

We are on our way.

August 19, 2009

Well, I am learning not to trust this unpredictable fierce disease.

John had his second chemo treatment last Friday and it went perfectly well. He had been home for two days, feeling so good, you would think he was close to being his ole self. But then strange things started to happen.

You could tell the pain levels had increased, but he could not give me a number (you know, on the 1 to 10 scale). He would either not answer the level, say zero or 50. Then he would start saying crazy things, off the wall things, that made no sense.

He has been throwing up, even though the doctor said the chemo would not even make his nauseated, but something is.

When he sleeps, he has nightmares, throwing his arms and legs in the air, talking gibberish and moaning. Not to mention getting up and doing nutty things. Like at 1:45 this morning, he was up shaving and asked how long I would be gone. I asked where I was going and he said "camping".

I thought he had maybe taken too many meds and so I took them away and I am giving hem to him on schedule. I've had control of them long enough that anything should be out of his system by now and he is still acting out of it.

He is very shaky and his voice is raspy to a point you can't hardly talk with him. If he is out of my sight, I can't trust what he might be doing or getting into. I just caught him putting two sets of clothes on.

Monday, he was out on the swing and fell asleep. If it weren't for Kenny and Gayle, he would have gotten more burnt than he did. So, now I don't know if he is just hot from the sunburn or if he has a fever.

I called the doctor yesterday and they told me if he was acting the same way today, to call them. I have a call in to him today and suspect they will want to see him. So, here we go.

I'll update, when I hear back, it is spooky.

August 14, 2009

This will be short and sweet!

When I went to the hospital and looked at John, I had a hard time even imaging he was so sick just a few days ago. He was in little pain, good spirits, great attitude and ready to face the upcoming battle, no matter what it brought with it. So am I.

I told him I didn't want to hear "I'm sorry to put you through this" or "I don't want to be a burden" again; that we were a team, the good with the bad. We all know life is not always going to be easy, but we do know it will be worth it.

So, the doctors released him and he is home. The pain level today is 2-3, very tolerable. He is up and at it and all I can say is prayer is powerful.

For now, he goes for his second chemo treatment today at 11:00, which will take about three hours. We'll see what comes after that. We have 3 more weeks, before they will take another body scan, to see how the treatment is doing. Remember, our prayer is that the chemo will do a "clean sweep" over his body and kill all the cancer cells at once. Miracles do happen, you know.

Lori was in Washington D. C. for some training on her job, for the whole time her dad was in the hospital, so we are glad she is home now.

Until next report, keep doing what you are doing, we feel the love and support. Thank you.

Update as of 8-13-2009

Well, you never can tell what will come your way. Some good, some bad, some expected, some a shocker.

This morning I called John at 6:45 AM to see how his night was. He answered the phone with great gusto and happiness, even cracking a few cute comments to me. He said he felt "pretty darn good" and that he felt his pain level was about a 3-4. He thinks they will let him come home today. So, this is really good news and we'll see how the day goes and if they will release him or not.

He is not on an IV or oxygen and only has a pain patch on with pills to cover excess pain. No vomiting and appetite improving.

He is scheduled for his 2nd chemo treatment tomorrow, so they may want to keep him for that, but maybe not.

I have no more to report, until we see the doctor, which is pretty soon.

Do prayers work? Of course.

August 11, 2009

Boy, I can see I should update this blog more often. It is hard to believe what I have to remember, considering my brain is so stressed. Well, here goes:

The doctors are having a hard time getting the pain medication the right combination and won't release him until they get it under control. The problem being, if he came home, the pain puts stress on other parts of the body, especially the heart and then we would have to go right back into the ER and start where we are right now. His heart has returned to normal for now, but still has a heart monitor on.

Sometime during the first few days, he got a bacteria infection and they are waiting for the culture to grow to find out what it is. They should know tomorrow. In the meantime he got a contaminant in the blood and had to give him two blood transfusions. Now, Bruce Tall, whom a lot of you know and his a doctor, tried to explain that this is not like an infection, but that the chemotherapy causes the red blood cells to not reproduce as quickly and normal and the white cell are lower than usual, so it is normal to have blood transfusions. So, we are ok with this. Forgive me, Bruce, if I slaughtered explaining this. But, who would know, but you and a few other doctors that will be reading this.

He has had little appetite and frowns at "Ensure", but smiles at chocolate...... go figure. But, he has thrown up a few times and they think it is probably from the pain medications and not the chemo. Never the less, it starts causing trouble with his blood sugar count and this morning his count was 48. For those who don't know, a good count in the morning is around 80-100. Then later in the day it would be 170. Too low is as bad as too high.

So, if he were to come home, all of the above things would have to be watched very carefully and could cause some serious trouble. The main thing, like I said, is the pain. Pain can cause stress to the heart and cause heart failure. Not to mention, his pain level is still too high for him to tolerate, The meds are making him "goofy" and his concentration is difficult. So, I tell the pain specialists, "your cocktail mixture is not right yet".

We both think the best thing for him is to remain in the hospital, until there is more stability than there is right now.

He has been able to take phone calls and visitors, with no restrictions. But, when that word got out, there was a lot of both coming and going. I don't know what to tell you there, except sometimes he can't hold a very good conversation and gets tired.

We both are anxious to get him home, but reality sets in, when we see what happens to his system during the day.

I'll know more tomorrow about all the areas of concern and I'll probably report back sooner than this last time.

Keep the cards and letters going and, of course, the prayers. Love again from us both.

August 7, 2009

OK, things are getting tense and many thoughts are going through our minds. It is so much easier to type these words than the speak them. I hope I will give you enough information and thank you, in advance, for not calling, as it is so hard to keep things going. You have my email address and I could respond late at night, if you want to do that. I always relay any messages to John, so feel free to send him a message at: njmiles@mac.com.

So, Wednesday, John started getting greater pain than he had been having, which was still pretty heavy. In all the years we have been together, I have never heard him moan in pain. So, at 7:00 P.M. I took him to the ER and called is doctor. Within minutes of getting the IV in and starting pain medication, his heart went out of control. They were scurrying around like a flurry. They didn't know if he was having a heart attack or possibly a blood clot. They took a scan of his chest and reported back that the lesion on the heart had enlarged and was causing the heart to over work. They also took a scan of the stomach area.

The pain meds were not touching him and after a solid day and night, they took all his pain meds away and put a stronger one in a patch. They said it was 10 times stronger than morphine. Well, it took awhile for it to kick in, but last night he was feeling great relief.

It was our 32 wedding anniversary and the nurses staff put an announcement up on the board and brought us a large ice cream sundae to share. It was pretty touching.

The results came back on the stomach and the doctor came in and told us the mass had increased in size and the cancer was more or less advancing at a rapid rate. It is a very fast and aggressive cancer. We discussed a few options to take at this point and we are going to bypass the radiation treatment as they feel it is not working, due to no pain relief and the enlarged tumor. So, John will start on the first chemo treatment and in 30 days they will retake the pet scan and see if the treatment is helping.

For now, they are keeping him in the hospital until the heart gets regulated (by medications) and then we proceed from there.

Until next time, we send our love to all and thank you so much for the support we are receiving in so many ways, from so many places throughout the country.