November 29, 2009 8:45 PM

Well, Thanksgiving is over and I think John did pretty well. He is pretty tired today and slept a lot, but was thankful for having some family come and saw quite a few friends.

He has been in and out of pain, some times extreme. Due to the various tumors, the pain moves from spot to spot. Like from his left side, just under the armpit and above the belt line, to mid lower back, to the stomach area, then to the left chest.

As you know, he was in the hospital for six days last week and his pain was so out of control that I didn't know if they could find the right drug for him. When he left, it was under good control, but as this week has progressed, he has had to have extra pain pills, over and above the two patches he is wearing. And then he gets quite shaky and I don't know if it is the pain or nerves that set him off. When he gets shaky, he has a difficult time getting around.

Tomorrow, he starts his new treatment and he is so positive it is what he should do. So, that means, I must share that same attitude, So, we'll see how that goes and I'll share that with you, when I find out myself.

Here are two pictures of Thanksgiving. One with me and one without and my nephew, because we were taking the picture. I know you will be very happy and surprised the see just how great John looks. You would never know he was ill at all. Me, I don't look so good, but I'm hanging in there.

We hope you all had some quality time with some of your family. I know some are suffering from lost loved ones and family members who are suffering as we have, but still, there is so much to be thankful for. Even with what we are dealing with, we still have more time together, which we are thankful for.

November 21, 2009 11:03 PM

I have never been good at keeping a journal and not real fond of the time it takes to keep one up and running, but I am so glad I have been able to keep this blog going, in John's behalf. To have a way to keep everyone informed and then when I see people, I know they are probably aware of what is going on in our lives and then I don't have to deal with the emotions so much. So, here is the latest:

John was admitted in the hospital, in great pain and hardly able to get up with help. He only ate a touch of food for three days and was down to 140 pounds. The morphine was not giving him any relief and the doctors couldn't figure it out. He had such pain in the left rib area, he could not lift his arm up off the bed and it took two people to get him out of bed. He was not able to hold any type of conversation and Lori and I could not even think about talking about the decision we had to make, before the doctors got back to us. They needed to know what his desires were, before they released him from the hospital. He was there for 5 days and just got home today.

Since the morphine was not working, they then decided to put him on another type of pain drug and a pain patch on the rib area and two rounds of radiation to help with the pain. In a short time, he had great improvement. But, a strange thing happened. As the sun began to go down, he started imaging things, like our niece's dog, Lexie was in the room and he began eating imaginary food out of his throw up pan. So, we called the nurse in and she said she thought maybe he was suffering from "Sundowner's syndrome (I think that is what she called it). She said when the sun goes down, it causes some sort of effect on the brain and people do weird things. We were told (thanks, Diane) not to be surprised if he saw people in the room that weren't there and things on the walls. It could have been the heavy drugs, but it was very strange.

By morning, he turn a remarkable turn for the better, meaning he was not hallucinating any more and this pain went from a 7-8 to a 3-4 and his thinking was very clear. So, Lori and I sat down and talked to him about his options of having the doctors make him comfortable and giving him a good quality of life, until the cancer took his life. Or he could start another round of treatment, which has a 15-20% chance of doing any good at all. If he had further treatment, the drugs would not work like they are now and the chemicals could start causing some side effects and making him as bad as he was when they admitted him and in the long run, additional treatment would not cure him, but could extend his life for an unknown length of time. The doctors were not very encouraging on giving him any more treatment, but more for letting him enjoy his time left. They also said not to let his current condition (little pain and feeling pretty good) fool us. That the drugs and meds he is taking is a cover up and not a cure; the cancer will not go away.

But, John surprised us all by opting to have additional treatment. It is a decision that only he could make. There was no way I was going to sway him one way or the other, but my heart kind of sunk when he announced it, because he has suffered so much for almost five months and I am dreading him going through it again and not really certain what good it could do.

But, on the up side, someone has to be in that 15-20% category and why not John? I have heard a few people tell me that John had told them, "I'm not ready to leave Nancy yet". That is quite a profound statement and one that touched me beyond words.

He has never been a quitter and has always been positive about this treatment. I'm sure that many of you have heard him say, "I'm going to beat this thing".

So, we move forward with a new "combo" of drugs on November 30th. The doctor wanted him to enjoy Thanksgiving and without treatment before then, he should be able to have an enjoyable time with family coming in to see him. Young John and his family and our nephew, Jerry and his family will be coming in. I am so happy that they will be able to she John in good spirits and in little pain compared to what he has been like. If they would have come last week, they would have been shocked at how they would have seen him and he certainly could not have held much of a conversation and probably would have spent most of the time in bed.

So, now you have it. I know we will all honor his wishes and support him in his decision. I would give anything to keep him in my life, so I'll just keep doing what I can and hope some of his faith will passed on to me.

Happy Thanksgiving to all and I'll check in after his first treatment.

Tuesday September 17, 2009

Dear all:

Today is an extremely difficult day for our family. John went in for a treatment yesterday and as most of you know, they feared a blood clot in his lung, so admitted him into the hospital and ran a CT Scan. The doctor came in this morning and told us, "there is no blood clot, but signs that the chemotherapy has failed and the tumors are taking over, including into the bones."

He continued to explain that there is one other treatment we could consider, but it was a milder treatment than the original chemo, which worked for awhile, but ultimately has failed. With this other treatment, there is only a 15-20% chance that it would do any good and he could have worse side effects, with no possibility of a recovery. He suggested we just get the pain under control and make him as comfortable as possible. Social Services has been in to make arrangements for Hospice, for when we come home. He will need a lot of help, as he can't get out of bed at this point.

He was in so much pain, they put him on a morphine drip and left Lori and I to talk over with John what we should do.

We have had a lot of medical people in, with tests and procedures and visits from our bishop, Bruce Tall, our stake president and a few others, that we did not have a chance to discuss what John wants to do at this point. Now he is totally out and needs the sleep.

He was given a beautiful blessing and he and I both felt at peace when it was over.

They have sleeping arrangements here at the hospital and I am staying overnight, but in the morning, we will have to make some tough decisions.

Due to the strain of all this, I am asking that you hold the phone calls and contact us through this blog, facebook or email. It has already been overwhelming, so hope no one is offended and you can understand where I am coming from. Thanks.

November 16, 2009

Last Wednesday, when we returned from dinner, John was complaining about some pain in his left shoulder, front and back, and around to the front and went right to bed.

He continued to have pain over the next few days and it was increasing as time went by. He was taking extra pain medication to help control the pain, but it wasn't working too well. He stuck it out until today, when he was scheduled for a chemo treatment.

When we met with the doctor, John couldn't even left his left arm up to his waist and had to have help getting up and down from his chair. The doctor said he had symptoms of a blood clot in his lung and they pretty quickly admitted him into the hospital for a CT Scan with an IV.

About 7:00 PM they did the procedure and by the time he returned to the room, we were told the results would not be in until the morning. So, that is what we will be anxious to hear about tomorrow.

If there is no blood clot, I don't intend on leaving the hospital without some answers about what this pain is about and how to control it. And how to help move him without hurting him.

We don't know if or when he will have another treatment, but we keep our hopes up that things will be put into play to get him the relief he needs, to keep his diabetes under control and move on with the treatment, until we can have another scan toward the end of the year and then we will know more about just what we have to deal with yet. We are not thinking beyond each day, which is full of faith and hope.

We are amazed at the continued support we have, for those that have offered to help in any way they can and with things we may need. A lot of service has been done, without us knowing who was doing the good deed.

Thank you so much. We love you all.

November 9, 2009 4:00 PM

This is a good day! John passed the blood test and had his treatment. He came home and went right to bed, but very happy he was able to have it. Now, we just have to wait a day or two and see what reactions he has from it.

He had two bad days last week. He was in bed one day, all day, then the next, he felt well enough to walk around the block. We walked completely around the block and he ate and drank good all day. The next day, he was in bed the whole day, feeling a bit more pain and exhausted. We were wondering if the walk was too much, but the next day he walked even more and the following day he felt good. So, we don't know what to pin the bad days on, other than the cancer itself. It is particularly hard to understand, because he had skipped a week of treatment and his body had time to recover a bit.

We will have a countdown until the final treatment and the final scan. It looks like it will be our Christmas gift, so it better be good.

Talk at you next week, after we know if he can have a treatment. OH, there have been some of you who wanted to know if there wasn't something we could do to make his blood cell count better and they told us no, only the body can fix that. If there was something, we would be digging right into it.

Later

Tuesday November 2, 2009

Well, here goes: I have pretty much recovered on my muscle "snap" sprain and can get back into a normal routine at home here.

John went in for a treatment yesterday and his veins were very difficult to get an IV in. It took 2 nurses and 5 times to get the needle in and stay. Then, they tested the blood and the doctor said the white cell count and his protein was too low to do a treatment. It was disappointing, because we just want the chemicals to do their job and not put it off a week here and a week there. They did give him some fluids, in a drip IV and got him rehydrated. Even though he seems to drink a lot, he gets so dehydrated, it causes all sorts of problems for him. One being, he has a difficult time concentrating and focusing on anything. His mind seems to be unable to process thoughts that require a comment and he just kind of stares it off.

On a good note, the doctor feels he is responding good to the treatment and is encouraging that things are working. He confirmed he will have another scan the end of December and see just how well things have worked.

He was us to having some company this week. The bishop and his family, the Thackers, the of the Jensen families, our neighbors, Debi and Laurie and the Ingoglia;s, from Paradise. Not all at once, of course. I'm attaching some pictures of two of Bishop Enger's children on John's Caddy and one of Sofia Jensen in another one. It was good for John to get his mind somewhere else.

And, we have had several dinners brought in this week. I think they took pity on me and my wacko hip.

I'm not going to add any more to this list as I am certain I will forget someone or some good deed and feel badly about it and probably won't start listing thing in future blog messages. So, just know we are being well attended to and love to hear from people, unless the "red" sign is out on the door. It says "sleeping", but could just mean John is not up to company at the moment.

Thanks for understanding and respecting our needs.

It is a real long week, when the treatment is postponed and takes some time for John to get out of the dumps from it.