Jim Meeks' Health

Jim's Obituary

2009-04-30T16:45:00.009-06:00

This will run in both Salt Lake newspapers and the Daily Herald on Saturday and Sunday.

James Baker Meeks

“Jim”

James Baker Meeks, beloved husband, father, grandfather and brother, passed away on Tuesday, April 28, 2009 after a fifteen-month battle with spindle-cell sarcoma, a rare cancer. He was born October 11, 1956, in Concord, CA, the third child of Arden Earl Meeks and Dixie Ann Baker.

Jim married his high-school sweetheart, Patricia Jo Godfrey, on August 18, 1978 in the Salt Lake Temple after serving a two-year mission for The Church of Jesus Christ of Latter-day Saints. He served in numerous church callings, especially cherishing his time as Bishop of the BYU 53^rd Ward from 2004 – 2007.

Jim began his career as a proud firefighter/paramedic for the Salt Lake County Fire Department, where he worked for eight years before completing the Physician Assistant program at the University of Utah in 1992. He also served briefly in the Army Reserve before being released honorably due to a serious injury to his hand.

Jim practiced as a PA from 1992 – 2008, when his illness prevented him from working more. He tirelessly worked for the advancement of his profession, and among other things served as President of the AFPPA from July 1, 2008 to the day he died. He received many awards and honors, among which were 1990 Utah Public Employee of the Year, Utah Physician Assistant of the Year in 1995, and Distinguished Fellow of the AAPA in 2008. No matter how busy he was Jim always made time for the greatest love in his life, his wife and family.

His mother, father, stepmother Sherry Carr Meeks, and one sister preceded Jim in death. He will be greatly missed by his loving wife, Patricia; devoted children, Clint (Jen), Mariah (Enrique), Coleton, Clayton, Makell; adoring grandchildren, Boston and Roman; seven siblings, and all those who knew him.

Services will be Monday, May 4, 2009, 1:00 p.m., Lindon Central Stake Center, 50 E 600 N, Lindon, UT. Friends may call at the same address on Sunday from 6 – 8 p.m. or on Monday at 11 a.m – 12:45 p.m. Flowers may be sent to Goff Mortuary, 8090 S State Street, Midvale, UT, 84047. In lieu of flowers, donations may be sent to ATTN: University of Utah, c/o Dr. Chen/Gouw’s Sarcoma Research, 540 Arapeen Drive, Ste. 250, SLC, UT 84108.

Funeral Information

2009-04-30T00:12:00.008-06:00

Thank you so much to everyone who has been posting their comments about Dad here on the blog, as well as those who have called and visited over the last two days. It is so wonderful to hear how much Dad was loved and admired by all those who knew him. The world, and all of us, are a little worse off without him. But, we know he has gone to a better place and look forward to the day when we shall see him again.

The funeral will be held Monday, May 4, 2009 at 1:00 p.m. in the Lindon Central Stake Center, located at 50 East 600 North in Lindon, UT. Two viewings will be held at the same location, the first on Sunday night from 6:00 to 8:00 p.m. The second will be before the funeral on Monday from 11:00 a.m. to 12:45 p.m. The interment will be at the Lindon City Cemetery, located just east of the chapel at 550 North 200 East.

Here is a map of the location:

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It's Over Now

2009-04-28T18:07:00.002-06:00

Dad's long battle with cancer is now over. He passed away at 6:10 a.m. Mountain Time today, April 28, 2009. He didn't sleep at all Sunday night and had a difficult day yesterday (Monday). He was very anxious all day and had difficulty breathing, but we thought that it was due to the lack of sleep and that if he just got a good night's rest he would be back on track. Unfortunately, at about 4:30 a.m. the hospital called my mom and said that we should come up as soon as possible. She called my other siblings and me and told us to head up as soon as we could. My mom, Clayton and Makell made it to the hospital in time to say goodbye. The rest of us (all of Jim's kids, plus several of his siblings, his grandkids, and a nephew) didn't make it in time though.

Things at the hospital didn't go quite as smoothly as we would have liked. Dad wanted to donate any organs he could, but the only ones they would take were his eyes. So, we sat around waiting for the harvester to come, but it was taking much longer than they had told us it would. We called the eye bank and found out that the harvester had gone to Pioneer hospital instead of the Salt Lake Regional Medical Center. He finally made it, completed his task and then called the mortuary to tell him he was finished and that they could come to pick up Dad's body. He told us they would only be about half an hour or so.

We waited around, some of us in my Dad's room, the rest of us out in the lobby, but it was again taking much longer than we had expected. I called the mortuary to see what was going on and they told me that the driver had just arrived and was waiting for security to let him in. We waited for about another 15 minutes and he still hadn't shown up. I went out and asked the nurse if she could call security and see what was happening. When she hung up the phone she had a very odd look on her face and was shaking her head. She looked at me and said, "They picked up the wrong body." I just looked at her for a second and then asked, "Really?" She nodded her head and I just said, "Well, I guess it's just one of those days." Security called the mortuary and had the driver turn around and come back. He finally made it up to Dad's room and all of us who were still there then left. It was about noon.

Mom, Mariah, Enrique, Coleton, Jen and myself went and picked out burial plots at the Lindon City Cemetery this afternoon, and we will be meeting with the mortuary and the bishop tomorrow. We are tentatively planning the funeral for Monday, May 4, 2009 at 12:00 p.m. with a viewing at 11:00 a.m that day, as well as Sunday night. I will post more details when the plans are more concrete.

Thank you to everyone who has visited, called, posted comments, and for all the other support we are receiving today. Dad was a wonderful man who touched so many people's lives, and it means so much to us to hear what he meant to all of you.

Significant Progress

2009-04-24T08:01:00.002-06:00

I finally have some really great news to report – Dad is no longer in the hospital! He was moved to the Promise long-term acute care facility yesterday around 3 p.m. Mountain time. He is in room 240, but for the time being Mom has asked that only his children, siblings, and aunts Jill and Nola visit him. If things continue to progress at the rate they have this week though, I'm sure he will feel up to other visitors very soon.

The week started out very poorly, as some of the doctors in the SICU were telling Mom on Monday that Dad's cancer was back in his lungs because they had seen it in his chest x-rays. They also told her that they had done everything they could clinically, but Dad hadn't made any real progress for quite awhile, and probably never would. As you can imagine, this really upset Mom and she asked to speak with Dr.'s Bull (Dad's surgeon) and Chen (Dad's oncologist) to see what they said. It turns out that somehow some of the doctors in the SICU mistakenly thought Dad has carcinoma instead of sarcoma. Dr. Bull said that if that were the case, then they would have been able to see tumors in his lungs because they grow that quickly. But, he said that sarcoma tumors don't grow that quickly and that all they are seeing in the x-rays is scar tissue and normal post-operative things. He reiterated his optimism that Dad will recover sufficiently to resume chemotherapy and return home, just that it will take some time and patience. He also said that with patients like this, they do sometimes hit plateaus, but that is to be expected and he will continue to progress, we just have to give it time.

One thing that we have definitely learned recently is how important it is for a patient to have an advocate who fights for them and is willing to question the doctors opinions when they seem wrong. If Mom hadn't stuck up for Dad and asked to speak to the other doctors, the SICU doctors would probably still be treating him like he had carcinoma tumors in his lungs and would die soon! It's hard to imagine that such huge "misunderstandings" can happen in an age with so much technology and amazing capabilities in the medical field – but they do. Please don't get me wrong, we are extremely grateful for all the work the doctors at the U of U hospital have done over the last six weeks. They saved Dad's life on more than one occasion with their expertise, but they are human too, and are therefore prone to mistakes. That's why it's so important for patients to have an advocate to look out for their best interests.

Thank you to everyone for your continued support throughout this whole ordeal. We hope that this chapter of Dad's struggle will soon be behind him so that he can move on to the next phase.

The Six Week Mark

2009-04-20T21:53:00.002-06:00

You read that correctly. As of today, Dad has been in the hospital for six weeks straight, all but a few days of which have been spent in the Surgical Intensive Care Unit. In a way it seems like a lot has happened over the last 42 days, but unfortunately there hasn't been a whole lot of progress in Dad's condition overall. In fact, in my opinion, he is doing worse now than he was just 1 and 1/2 weeks ago. When I saw him on April 7th he was very awake and alert, happy to see me, and had gained quite a bit of strength is his hands and arms. He was even spelling words out using a paper with letters and brief statements typed on it. Things seemed to be going well.

The 9th is when his lungs collapsed again; things have not been well ever since. Both my wife Jen and I went to see him on Sunday the 12th and I was honestly quite shocked at what I saw. He was no longer alert or happy. He didn't even really seem very happy to see us. I could see the utter exhaustion on his face, and he couldn't even really find the strength to mouth anything other than, "Thank you," or, "I love you," and even with those phrases his lips and tongue would quiver for a few seconds before he was able to form them the way he wanted to get his message across. Most of the time we were there he didn't even look at us, he would just stare up at the ceiling. One of his doctors calls it, "The thousand-yard stare." The doctors felt that some of the drugs he had recently been treated with were at least partially to blame for Dad's lack of focus, so they have spent the last week trying to get them all straightened out and get him back to being more like himself.

I went and visited Dad again yesterday (the 19th of April), and things seem to have improved, but only slightly. While Dad would look at me more and noticed things go on in the room, he still had a difficult time communicating and would just sit and stare at me or others for long periods of time. He showed very little emotion and was very tired from the new exercise they started him on. They put Dad on what they call a cardiac chair and strap him in. The chair is kind of a cross between a hospital bed and an arm chair (I'll post a picture as soon as I get one). It's adjustable, and they sit Dad almost straight up and then push him around the halls – hopefully he'll be able to go outside soon. Dad's nurse and respiratory therapist on Saturday were both really pushing hard for the doctors to order the chair for Dad, as they felt it would really lift his spirits and hopefully help get some of the gunk cleaned out of his lungs.

Dad's ventilator settings are still very high, and when they tried to change them a bit today his lungs didn't react well, so the settings had to go right back up. His kidneys are producing about 50 cc's of liquid per hour now (which is good) but they still aren't filtering like they should, so he is still receiving dialysis every other day. He has had pancreatitis the last couple of days, so his feeding tube was shut off. It was turned back on today and he seems to be doing alright with it for now. The cytomegalovirus and several bacterial infections are still being treated, and he is still receiving blood and/or platelets every couple of days.

As you can tell, there hasn't really been a whole lot of change over the past week. One day will be a little up, the next a little down, but it is averaging out to be very little change overall, which is why I haven't posted anything in just over a week. I promise though, that if there are any significant changes, I will definitely post it right away.

One more thing I wanted to share is about the incredibly huge costs of staying in the hospital for so long, especially under such intense care. Mom said she received the bill for the first month of his stay and it amounted to just under $500,000! Thank goodness Dad has good insurance through the university and for yearly out-of-pocket maximums! :-)

Thank you to everyone who posts their wishes of hope and words of encouragement here on the blog, and to all those who pray, send donations, or help and encourage us in many other ways. All the acts of kindness truly mean a great deal to all of us, especially my mom and dad.

See What I Mean?

2009-04-12T08:53:00.003-06:00

So, we've had another turn around, but at least this time it is in the direction we like. Dr. Bull, the cardio-thoracic surgeon who performed both lung surgeries on Dad, spoke to my Mom yesterday and his outlook is much more positive than that of the Doctor from Friday. He said that he has been doing this for a long time and deals with patients almost every day. In contrast he said that the SICU doctors are usually on for a week or so and then have a few weeks off, and that everything they say should be taking with a large grain of salt. He told Mom that based on Dad's situation and his will to keep on going, he fully expects that Dad will be able to go to the Huntsman Cancer Hospital soon and begin receiving the experimental chemo and that he'll be able to go home at some point. Dr. Bull said that the SICU doctors sometimes forget that cases like this just take a long time, require some patience, and that there are bound to be setbacks. So, for now, we're all breathing a big sigh of relief.

The procedure they performed on Dad Thursday night is called a bronchoscopy, and Dr. Bull says that Dad has been much improved since that time. They took a scope, went down into Dad's lungs and sucked out a bunch of blood and mucus. The virus for which he is currently receiving treatment is called cytomegalovirus. It is actually a virus which most humans carry and have antibodies to fight, but is serious for those with compromised immune systems like Dad. Another factor which puts him at high risk for being affected is the dialysis. The medicine he is being treated with is called ganciclovir, which has been around since 1980. It works by inhibiting the growth and replication of the virus.

Another piece of good news is that Dad's kidneys suddenly started to work on Friday, enough that they put a catheter in him for the first time in a couple of weeks. They aren't producing enough for him to be taken off of dialysis, but Dr. Bull is encouraged by the fact that they are trying to do their job. Overall, Dad was in a much better mood yesterday and is starting to look better again (Mom says he had big dark circles under his eyes on Thursday and Friday).

Happy Easter to everyone! This Easter is especially meaningful for us as we reflect on the meaning of the Savior's sacrifice and resurrection for our family in light of Dad's condition. Although we want Dad to be around as long as he is up to it and as long as the Lord sees fit, we know that we will be with Dad again in the next life because of Jesus Christ. His gift gives us comfort and hope for the future.

Back to the SICU

2009-04-10T08:45:00.004-06:00

It's hard to believe how this whole ordeal lurches back and forth and up and down. I was about to post an entry yesterday afternoon which would have been a very positive one. At that time, Dad was still in the Intermediate Care Unit and his ventilator settings had been turned down in the morning to where he was initiating every breath and the ventilator was just supporting him. They had also discovered why he has to keep receiving blood every day. He has some sort of virus (I haven't been able to get the name yet) which is causing the problem and they have started treating it.

Unfortunately, that is the only good news from what happened yesterday. When the care team took an x-ray of Dad's chest, it looked like there was a bunch of mucus stuck in his lungs. They decided to send him back to the SICU so that he could again receive one-on-one care from a nurse and hopefully prevent it from happening again. In order to get out the mucus that was already down there, the doctors decided to use a scope and clean it out. However, when they got down there, they didn't find any mucus. Instead they found that his lungs were again inflamed, bloody and had deflated – especially the right side. So, they had to turn the ventilator settings way back up in order to inflate the lungs again.

One of the SICU doctors took Mom outside of Dad's room and just told her straight up what was going on. He said that while Dad did come close to dying several times in the first couple of weeks and got better, even though none of them expected him to, things again don't look good. The doctor said that most of the time when individuals have been on a ventilator for so long, with so little progress toward getting off of it, it usually means that they never will. He also mentioned Dad's kidneys again, and how they are basically not functioning at all and that they will continue to have to put him on dialysis every other day. Then he got right to the heart of it and said that there is a good chance he will never get to go home again – in fact they may never be able to get him to the point where he can even go to Promise, the long-term acute care facility. This doesn't mean that Dad is going to die in the next couple of days, but it's definitely not the kind of news we were hoping for.

Mom has asked that only Dad's immediate family (kids, siblings and Aunt Jill) come to visit for the next few days due to this setback. The whole family wants to again thank everyone for your continued love and support. It means more to us than any of you will ever know. I'll post again when there is any significant change.

P.S. I almost forgot, here are a couple of pictures Dad wanted Mom to take and have posted on the blog.

Dad wanted to make sure everyone could see him with his trach. :-)

This is Dad's every-other-day dialysis machine.

Another Week

2009-04-04T08:56:00.004-06:00

Greetings to everyone from Akron, OH. Jen and I are here checking out the law school at the University of Akron. My dad has made quite a bit of progress this week. He has been moved to the IMAC, or intermediate care unit, and all of his chest tubes have been removed. In about 7 - 10 days he will need to be moved to a "Long Term Acute Care Facility" where they will continue to wean him off of his ventilator and help him with his physical and occupational therapy.

He is still having difficulties with anxiety and so for the time being he has asked for no visitors except for his wife and children. The doctors are continuing to treat it with medication and we're hoping that it will subside soon. We'll let you know as soon as he is ready to receive other visitors. His hematocrit is still dropping on a regular basis as well, so he has to continue receiving a couple units of blood or platelets every day or two. The doctors still can't figure out what is causing it, but are working diligently to try and do so.

Thank you to Aunt Jill and Enrique for staying with Dad during the days this week. Mom is still too sick to visit, which is really hard for both of them. Thank you to everyone else for your continued support and prayers.

Still Improving

2009-03-31T12:14:00.003-06:00

I apologize that I haven't updated this since Thursday night, but it has been a little crazy for me trying to get caught up with everything from spending every night at the hospital last week. I know there are many of you who depend on this blog to stay apprised of what's going on with Dad, so I'll try to keep it more up to date.

Dad has been struggling with sleep since about Tuesday of last week. He usually falls to sleep at around 10 or 11 and sleeps for an hour or two and then wakes up. He then looks over, smiles and mouths, "I think I slept better." I then inform him that it has only been a little bit and he scowls. Part of the problem is that he has had a lot of anxiety and panic attacks that don't allow him to relax.

Last week they gave him a sleeping medicine on Tuesday night called Cyroquil (spelling?) that allowed him to sleep for about four hours. However, Dad wanted to take Ambien so they gave that to him on Wednesday and Thursday. Unfortunately, it didn't help as much as the first drug so my mom was able to talk him into going back to it for Friday night. Unfortunately, it wasn't helping much either. They also started him on Haldol to help with the anxiety and panic attacks, but it seemed to have no effect whatsoever. So yesterday they discontinued the Haldol and started giving him Lesoprin (or something like that, I can't remember the exact name, sorry). They also double his dose of Cyroquil last night, and this morning the nurse told my mom that he slept much better last night and that Dad actually had a smile on his face this morning - something he hasn't had for a few days. So it sounds like the new drugs are starting to help.

Mom has been sick since Sunday with a severe cold, and the nurse on Sunday gave her several hints that she shouldn't come up on Monday, but instead stay home and get feeling better. She is also home today, and hopes to be better by tomorrow so she can start going back up and seeing Dad each day. Since Mom couldn't go yesterday, I went up and spent a few hours with him, and today Dad's aunt Jill is spending the day with him. Even though he is the one who is sick, he still worries about everyone else. He knew that I needed to leave by 5:00 p.m. yesterday to meet with a group for school and he started falling asleep around 4. But, he couldn't sleep because every few minutes he woudl wake up and ask me, "Don't you need to go?" He didn't want me to miss my meeting. So, in order to let him sleep, I decided to leave about 30 minutes early.

Dad's vent settings continue to slowly improve, as he completely controls the breaths now, and his PEEP setting was at 6 yesterday. Unfortunately, his kidneys still arent' really working at all and he will have dialysis today. He hates physical therapy because it is so draining. All day yesterday he kept asking me when they would come because he wanted to get it over with so he could relax. The anticipation was horrible for him. All of the doctors, nurses and other care givers say it will still be a long haul, but that he will definitely get out of there and go home eventually - a big turnaround from where we were a week and 1/2 ago.

Thank you to everyone for all of your support in whatever form it comes: prayers, donations, visits, bringing food to my mom, Clayton and Makell, etc. We truly appreciate everything you do and may God bless all of you for your kindness and generosity.

Thursday Night

2009-03-26T23:00:00.002-06:00

My mom said that she felt today was the best day Dad has had since this hospital stay started 2 and 1/2 weeks ago. For example, he currently has no IV drips going – it's absolutely unbelievable. His kidneys also started working on their own a little bit today, which I don't think anyone expected, and he is no longer on 24/7 dialysis. Tomorrow he will be started on standard dialysis, which lasts about 4 - 5 hours per day. The standard dialysis will begin to take a lot more fluid out of his system, which should help his lungs to start working better.

Uncle Derek, thank you for volunteering for Saturday night, I really appreciate it. All the numbers I have for you are disconnected, so I hope you read this :-). Thanks to Enrique as well, he is going to stay tomorrow night. My wife is very excited to have me home for two nights!

Dad still has a long way to go, but things are definitely looking up.

Thursday Morning

2009-03-26T00:02:00.002-06:00

Dad has made some great progress today. He is now off all of his heart medications, so the only IV drips he is on now are antibiotics and calcium (due to the fact that the anti-coagulant for the dialysis binds to calcium and clears it out of him). His vitals are much improved with a pulse of about 75 and a blood pressure of 160/65. They were also able to reduce one of the settings on his vent today, which is another good sign.

Early Wednesday morning, Dad's hematocrit was at 19 (which is low) so they gave him two units of blood and the number jumped up to 28, which the nurse Jill said was a big jump, so that was positive as well. Because the hematocrit keeps dropping, the care team is assuming that he is still bleeding somewhere, but they did another CT scan today and couldn't see anything which would be causing the number to drop like that. The resident on tonight, Dr. Millar, said that it is possible the dialysis is causing the problem, so they will just keep monitoring him and see what happens.

The CT scan did reveal that Dad's NG tube (which drains fluid, mostly bile, from the stomach so it doesn't seep up through the esophagus and go into the lungs) was too far down, which may have been the cause for the issues with his pancreas. They pulled it out a little, and we are currently waiting to hear back from the lab to see if the pancreatic enzyme numbers have improved. If they have, then they will be able to start feeding him through his feeding tube again, which I know will make Dad happy.

When Dr. Millar came around tonight he started talking to my Dad about the priesthood blessing he received on Saturday night (the 21st). For those of you who aren't aware of it, we are members of the LDS faith and believe in the anointing of the sick and afflicted as spoken of in James 5:14. So, on Saturday night, when things were bleakest, my brother-in-law Enrique did just that, with the aid of one of the doctors here in the SICU. He was anointed with oil and given a blessing that he would be able to have the strength to make it through the night and the procedure he was going to have the next morning. Dad was also given a blessing by his bishop (local church leader) a little bit later, in which he was told that he would be here long enough to complete his mission.

Anyway, doctor Millar was trying to tell Dad something about the blessing, but Dad started talking about having a care conference for all of the patients that he would lead, so the doctor wasn't able to finish. A few minutes later I went out and asked the doctor what he was going to say. He said that he and the doctor who helped Enrique on Saturday (his first name is Matt) are both LDS as well, but that it is very hard for them to participate in blessings sometimes b/c their education and training sometimes overshadows their faith. He said that the expectation of the doctors on Saturday night was that Dad wouldn't survive until the next morning – medically it looked like he didn't really have a chance. So, it was a somewhat difficult task for Matt to have the faith to participate in a blessing for Dad to get better when he didn't really think that would happen.

Dr. Millar continued to tell me that because he had been asked to help, Matt was happy to, despite his reservations. Then, miraculously, Dad started to improve – against all odds. The medical team hadn't done anything different to help him, he just started to improve on his own. Dr. Millar said that ever since Matt told him the story of what happened that night, Dad's experience has been a source of spiritual strength for him and helped renew his faith in the power of priesthood blessings. I can only say, "Wow!" Dad continues to touch so many people's lives, many of which he doesn't even know about. We're sincerely grateful for the priesthood and the Lord's continued sustaining of Dad and the family.

I also had a frank discussion with Dr. Millar about what we can expect going forward. He said that Dad is still very sick, and actually used the term, "pulmonarily disabled". It will be a minimum of "weeks" before Dad will be able to get off the respirator and breathe on his own – assuming everything continues to improve as it has been over the last few days. Any setbacks could obviously change the time frame. He also said that he has renal failure, and that it is fairly likely that Dad will never regain the full functionality of his kidneys. The doctor also said that Dad is extremely weak, and it will be a long time before he can stand up on his own, or even sit up. When I asked about what kind of quality of life Dad could expect, he said that as long as they can get him off the respirator and home Dad should still expect to have a high quality of life. As far as predicting anything else, Dr. Millar said it was anyone's guess. So, we'll just continue to take each day as it comes and hope for the best.

I noticed that Pam Slade (one of my parents' neighbors) left a comment to the effect that they would like to come see him, but can't. Well, you can! The SICU is open to visitors 24/7, with the exception of shift changes which occur every twelve hours from about 6:30 to 8:30. If you would like to come visit Dad, it would be best to come between 8:30 a.m. and 6:30 p.m b/c that is when he is most likely to be awake. We would only ask that if you are sick with a cold or the flu that you wait until you are better to visit, and that you keep the visits short (5 - 10 minutes), as communicating is difficult and tiring for him. But, I'm sure he would be happy to see any of his friends, family, neighbors, etc.

I have a favor to ask. I have a new nephew who is being blessed in church on Sunday morning, and I would like to attend. If someone would volunteer to stay with Dad on Saturday night, from 8:30 p.m. to 6:30 a.m., I would greatly appreciate it (my wife would also like to have me home at least one night this week :-). It's a pretty easy job, as he sleeps the majority of the night. You would just have to be here to help him when he is awake, with things like more blankets, suctioning out his mouth, listening to his iPod and watching TV. Just post a comment here on the blog, or call or email me if you're interested.

Thanks to everyone for all the help and support. We know Dad wouldn't be doing as well as he is without your collective faith and prayers.

The Fight Goes On

2009-03-25T02:58:00.002-06:00

I want to thank my wife Jen for the fantastic job she did on the last post. I was way too tired to write anything at that point, so I really appreciate her help. The doctors were able to turn down the settings on Dad's ventilator ever so slightly today, and he is almost all the way off Milrinone, a medicine used to dilate the blood vessels.

Because Dad hadn't slept for two or three days straight after they stopped sedating him, he has been extremely tired yesterday and today. A few hours ago, he was so exhausted that he started to cry a bit when he was having a hard time telling me something he needed. It is so frustrating for him to not be able to do anything for himself. I asked him if he would like something to help him sleep, and he said yes. The doctor's prescribed him 25 mg of a combination sleeping and anti-anxiety medicine that starts with a "c" (sorry I can't remember the name). When he woke up just a few minutes ago, he said that he feels like he slept better, so it seems to be working.

Dad's pancreas (which produces insulin, among other things) is not working correctly; it is producing too much of a couple of enzymes that aid in digestion. Because feeding him would only cause the pancreas to produce more of the enzymes, they have stopped feeding him through his feeding tube. If the enzyme levels don't go down in the next day or two, then he will have to receive his nourishment through an IV. Hopefully the levels will go down so he can get something in his stomach, as he told me last night that he felt famished.

His biggest request continues to be for water, and the nurses have started to allow him to have four or five swabs (small sponges the size of a die on the end of a stick) worth of water at a time – but he still wants more. His mouth and throat always feel dry, and nothing would make him happier than to take a big swig of water. Unfortunately he can't, because his esophagus is currently pinched closed by his tracheotomy tube, so the water just goes right to his lungs. They try to limit the amount that goes to the lungs to try and prevent infections. Dad's blood pressure and pulse are pretty much normal now, and he only has to receive insulin once or twice a day after he is given steroids (which raise blood sugar).

While he is making progress in the right direction, all of us wish it was at a faster pace (him most of all). Unfortunately, we just have to be patient and let his body heal as fast as it can. When I told him yesterday about the AFPPA scholarship that had been created in his name, he just started shaking his head and mouthed, "Wow!" I could tell he was very touched. Thank you to his fellow PA's who deemed him worthy of such an honor, and to all of those who continue to pray for him and the family. While this is a difficult and trying time for him, we know that Dad can get through it with your support.

What a Weekend!!!

2009-03-23T12:55:00.004-06:00

Hi everyone, this is Jen, Jim's daughter-in-law. Clint asked me if I would just give you a quick up date of what has happened since Saturday. I only know basics, so once Clint has rested enough, he'll fill you in on anything I miss.

On Saturday they turned Jim's SICU room into a make shift OR seeing he wasn't stable enough to move. He had a temperature of 104 and they thought that his central lines where the cause of his infection so they were able to successfully move all of the lines to the other side of his body.

Unfortunately this didn't help much and his blood pressure seemed to still struggle. The only thing that seemed to control his blood pressure was to give him more blood. They decided that he was loosing blood somewhere, they just weren't sure where the problem was. They had wanted to do a scan, but seeing he was so unstable they weren't able to move him. The Doctor was very concerned and Jim kept mouthing, "No more medicine!" When he was asked if it was his time to go, he just rolled his eyes and said, "No I have more of a mission."

Patti asked the doctor if it would be a good idea to get the rest of his family up to see him, and he highly recommended it. The doctor wasn't sure if he was going to make it through the night and told us if there was anyone who wanted to see him, they should come now. All of his siblings were able come up to the hospital, except for his sister Mel who is on vacation in the Philippines.

The SICU staff was kind enough to let bigger groups into see Jim, usually they only allow two people in the room at a time. Everyone was able to tell him that they love him and spend a little time with him. The immediate family was able to spend most of the night with him.

Despite Jim's condition Saturday night, I am pleased to tell you that he is still Jim. All night he was still cracking jokes and making funny comments. Even though it's hard at times to read his lips, we definitely know he still has his sense of humor. When Patti came back from the restroom once, he told her to not leave him again and that she should get a cathater put in her so she wouldn't have to leave again.

By 2:00am nothing major had changed, so we tried to get some sleep. All of his children and his spouse stayed the night, along with Melody's son Jordan. We slept (if you call it sleep) in the waiting room, some of us on chairs and other's on the floor. We all wanted to be there in case something happened. Patti stayed by his side all night and when she woke up from a little 30 minute nap, Jim told her not to do that again. He hasn't been able to sleep much since they took him off the sedation meds and he doesn't want to be left alone.

At 5:30 a.m. Jim was stable enough to move to get a CT Scan where they found the source of his bleeding. If I understand right it was in his thoracic cavity. The doctors were afraid to take him into surgery in case he couldn't handle it, but decided that it was better to take the risk then not.

We're so thankful that they did! Dr. Bull cauterized 50 capillaries on his lung which took care of the bleeding. He also took a look at his lungs and is very pleased with how they are healing. He said that usually when people have gone through what Jim has, the lungs are purple and not healthy looking. Jim's were pink and looked very healthy.

As Sunday went on Jim continued to get better and better. His blood pressure is higher than it has been since his last lung surgery, they have turned down the ventilator and he is breathing more on his own, and they have taken him off two of the four heart drugs he has been on (this is very good news because the drugs he has been on are damaging after long time use). By the end of the day they hope that he will be off all four meds.

We are just so happy that this miracle has happened. We know that things still aren't over, but being at the bottom and now working up, is a much needed change. We just hope that he keeps continuing to climb and that we don't see the bottom for a long time.

Thank you, thank you, thank you for everyone who has prayed for Jim and the family. We know that it's because of you that we've all been able to handle this situation. I have to apologize that I'm not as eloquent or as informative a writer as Jim or Clint. Clint spent the night in Jim's room last night so Patti could get some sleep and I offered to give an update so Clint could get some rest. Once he wakes up, and has received more information, I'll have him update you with the latest and correct any of my mistakes.

Thank you again for everything!

A Bad Night

2009-03-21T09:20:00.003-06:00

Despite the successful tracheotomy yesterday, and the fact that we were able to communicate with him after a week and a half, Dad is still not doing very well. His blood pressure was very low again last night, even though they are giving him steroids on a regular basis. His white count is up to 29,000 (meaning the infection is getting worse), and he continues to have a GI bleed.

During the procedure yesterday the team only removed and replaced the external parts of two of his three central lines. Since the infection is just getting worse, they have decided to sterilize his room today and completely replace all three of them right there in his room. They will most likely also being doing a scope of his GI system to see if they can find the source of the bleeding. For whatever reason, it just seems like Dad can't have two straight days of improvement.

We continue to hope and pray for the best, and thanks to all of you for doing the same. Here are a few more pictures my mom asked me to post.

Dad and his current setup

The dialysis machine

This machine delivers medicine through the ventilator which helps the right side of Dad's heart pump better

My parents' friends, Richard and Kasey Elkins, flew up from Texas last week. Thank you!

Quick Update

2009-03-20T11:15:00.004-06:00

Dad's tracheotomy is complete, and he has been back in his room for about an hour. They keep telling us that we can't come back for a few more minutes because they are getting him settled. We were told that the procedure went well, and they also replaced the three different central lines he has, as they believe one of them is a source of infection. I'll post any other info as it becomes available.

12:21 p.m.: We're back in Dad's room now and he is actually interacting with us! The SICU doctors wanted to see how he would do without the paralytic (although he is still under heavy sedation) and he seems to be doing very well so far. We were able to talk to him and he squeezed our hands three times for "I love you". He kept mouthing the word "water" because his mouth is so dry from having the tube down his throat and his mouth open constantly. Now that his mouth has been swabbed a few times he seems to be happy. When I told him he was in the hospital he also mouthed, "I know." When I said that it was great to interact with him and that we had missed him he cried a little and shook his head. It makes such a huge difference to be able to communicate with him! I'll let you know if anything changes, but things are going very well right now.

Ups and Downs

2009-03-19T23:07:00.002-06:00

The marathon and drama continue, unfortunately. Every day there seems to be a few small improvements along with a few small setbacks (or sometimes large ones). The net result is that not much has changed since the last post. His blood pressure and heart rate are fairly stable, most of the time, but every once in awhile his blood pressure falls to 50/30, which is obviously not good. The nurses then give him a quick shot of steroids or other medication and it usually returns to a more stable number shortly thereafter.

There are two big things which have changed. The first is that on Tuesday the doctors discovered that Dad had developed a bleed in his gastrointestinal tract. He was given some blood and platelets and it seems to be under control now. It was a little scary when he passed a blood clot the size of a fist on Wednesday, but their hasn't been anything since then.

The other major development is that Dr. Bull thinks it would be beneficial for Dad to have a tracheotomy, which is when a hole is cut in a person's throat (I apologize for the blunt way of putting that). This will hopefully allow the ventilator pressure to be turned down to a more normal level, and will allow them to more easily remove the tube for short periods of time once Dad is ready to start being weened off of the ventilator. Additionally, I noticed today that his lips have become quite dry – despite the nurses very regularly placing cream on them – even to the point that there was some dried blood on them. Having the tube go through the "trach" will allow his mouth to be closed and moistened more naturally.

In order to get the tracheotomy, Dad will be going to the operating room at 7:00 a.m. tomorrow morning. Please pray for the procedure to go smoothly. Again, thank you to everyone for your prayers, visits, donations, food, and everything else everyone is doing to help our family. We couldn't have made it this far without all of you.

The Marathon

2009-03-16T07:40:00.003-06:00

Over the last few days, several of the doctors have been talking to my mom about what is going on with my dad, and how long we should expect his recovery to take. They have been using phrases like, "it's going to take a long time," or "we just try to make small, incremental improvements each day, and somedays there will be set backs." Dr. Bull was talking to my mom about trying to take care of herself, telling her she needs to eat and get plenty of sleep, etc. He said that this process is like a marathon, so she needs to pace herself and make sure she takes care of herself. So, I guess the point I'm trying to make is that Dad is going to be in the SICU for quite some time, and most days there probably won't be much significant change.

Friday there was a bit of a scare when the doctors found a large white mass on the right side of Dad's chest in an x-ray. They weren't sure whether it was fluid or air, but knew they needed to get it out of there by inserting a chest tube on that side. They were thinking of just doing the procedure right there in his room, but Dr. Bull said it would be too dangerous not to know exactly where it needed to go. They decided to do a CAT scan so they could get the tube precisely where it needed to go. It took six people to move Dad, his bed and all of the equipment that had to go with him. They were able to get the scan and insert the tube successfully, and as soon as they did there was a big whooshing sound, so it turned out to be air. However, the doctors have no idea where it came from, as there is no leak in his lung or any other obvious source. But, getting the air out made it easier for the respirator to function correctly and for Dad to breathe, so overall it was a positive development.

Saturday was fairly uneventful, with the doctors continuing to try and slowly wean Dad off of the ventilator and his medicines. Sunday they began to switch his sedation medication from Verced (spelling ?) to Propolol (or something like that, sorry) which is a more mild sedative and will make it easier for him to wake up. The only problem is that changing the medication also caused his blood pressure to go a little crazy and his heart rate to go back up into the high 100-teens, when it had been down around 100 prior to the change. They also took Dad off of the paralytic medication for about an hour-and-a-half yesterday, which he seemed to tolerate very well. After that time he began to fight against the respirator again so they had to restart it. But, my Mom said that during the time he was off it he did raise his eyebrows once while she was talking to him.

Several times over the last few days they have tried to set the dialysis machine to start removing the extra fluid which has been accumulating in Dad's body, but each time they try he doesn't react very well. So, the dialysis is currently only removing the amount of fluids they are putting into him. As a result of the extra fluid, he has a somewhat swollen appearance. Because of the high blood pressure (190/90) after changing the sedative yesterday, they wanted to make sure that Dad hadn't had an aneurism or anything, so they checked his aorta and it was the correct size, so everything looked alright.

As you can see, there hasn't been a whole lot of progress over the last few days, just a little bit here and there. This whole process really is like a marathon and is going to take a long time. As more changes occur or information becomes available we will keep you up to date. Thank you once again to everyone who has been praying and fasting for my Dad and our family, we can't thank you all enough or tell you how much it means to us. Thank you also to my dad's sisters Karyn and DeAnn, and my parents' friends from Texas, Richard & Kasey. They have all been spending quite a bit of time at the hospital with my Mom over the last few days when us kids couldn't be there, we really appreciate it.

Slow and Steady

2009-03-13T00:46:00.003-06:00

I apologize to all of you who were anxious for an update Thursday, but I was severely behind on school work from being at the hospital Monday through Wednesday and had to do some catching up. The post tonight comes from an email that my sister Mariah sent me a couple of hours ago. She was at the hospital with my mom most of the day and knew everything that had been going on. Thanks Mariah!

This morning the hospital called and obtained Mom’s permission to put a feeding tube in Dad, and to also put a tube in for dialysis. When we got up to the hospital, we were glad to find out that Dad had a much better night. They had started to give him a new medicine last night directly through his ventilator and it had started to help the right side of his heart pump better. Throughout the day it continued to help, and all of his heart numbers have improved.

Since all the monitors were showing that his numbers had improved slightly, they wanted to confirm it with an echo to see if they should continue on the same course or try a different medicine. Dr. Lou came in and told us that the echo did show some improvement in the heart. The right side looked better than yesterday, but is still dilated; his left side showed that it was getting more of the blood that it needs.

All the doctors told us that the dialysis machine is going to be his best friend for awhile. They started him on Continuous Veno Venous Hemodialysis (CVVHD). There are two types of dialysis and this one is the lesser of the two evils, so to speak. It will run 24/7, and is much gentler on the body vs. the other, which runs 4 to 5 hours at a time and is very harsh on the body – which he couldn't handle right now.

I think that they started the dialysis around 2 p.m. At first they were just taking out the fluids they were putting in to see how his body would handle it, and it did very well. About 5:30 p.m. they started taking out a very minimal amount of excess fluid to see how he handled that, and when mom left at 7 he was still doing well with it. Once they can start getting out more of the fluid, the more his heart and lungs will start to improve. Hence the reason dialysis is going to be his best friend.

They have also been worried about his kidneys, since their function hasn't been normal, so they did an ultrasound on them today. Dr Lou just had the preliminary report, but said that from what he could tell the kidneys look fairly normal. He feels that they haven't been functioning properly due to lack of blood flow, which is caused by the low blood pressure, which is caused by his heart not working correctly, which is caused by the water retention. It is just one big circle.

The kidney specialist team (nephrologists) came to check on Dad. They told us that with Dad’s diagnosis his kidneys have an 85% to 90% chance of fully functioning again, but that first the heart and lungs have to heal, and then the kidneys follow. As of right now, the dialysis machine is doing the total function of his kidneys. With the dialysis they have to use citrate to keep the blood from clotting in the machine. It also has dextrose in it, which has caused Dad’s glucose levels to go up again, but they aren't too worried about it because that is to be expected and have simply increased his insulin to regulate it.

Things on the ventilator are slightly improving. They were able to lower his oxygen to 40%, which is the lowest they put it at while a patient is on a ventilator. There is also a PIP number and a PEEP number which has to be met in order for him to be off the ventilator. It needs to be 5/5 and today when we left they had it at 28/12 vs 36/12 yesterday. Throughout last night and today they were able to lower it in small increments. Dr Lou was happy with this progress, saying that even though he is just making baby steps, at least they are in the right direction. His main goals now are to get the excess fluid off of his lungs, to continue to slowly decrease the numbers on the ventilator, and also get him to a point on it that they will be able to start taking him off sedation and paralysis. They have to make sure that he will be able to be comfortable and relaxed so that his body won't try to fight it again. But they really want to get him awake so that he can start interacting again.

If things keep slowly improving, Dr. Lou also wants to gradually start taking him off some of the 11 medicines that he is getting. All of the doctors say that they are happy with his progress today and that if he continues to improve a little more each day, or at least stays stable for a day or so in between days with improvements, then they will continue to be happy. Dr. Lou said that he isn't walking such a fine line as he was on Tuesday, and he has more leeway to move numbers around (on the ventilator, etc.), which is a good thing. I again asked him his opinion on the probable outcome, and he still wouldn't give a certain answer, just that there will be more waiting and seeing.

Also today, they were able to take out his tube for the spinal block (which was used during the surgery on Monday for pain management). At first his clotting factor (INR) was too high, meaning that his blood was to thin and wouldn't clot, so they had to give him two units of FFP (fresh frozen plasma) to bring it to a normal level. They then took it out, so now he has one less tube. Dad also ended up having three units of blood yesterday to help hydrate the left side of his heart and raise his blood pressure, which together with the new medicine they are giving through the ventilator, helped his blood pressure to be up and his heart rate to be down. They said that although they are happy with his improvement, Dad is still very sick and his situation is still very serious.

Thank you again to everyone who is keeping Dad and the rest of us in their thoughts and prayers. It is making all the difference.

SICU Day 3

2009-03-11T10:51:00.009-06:00

Good morning everyone. I want to take this opportunity to thank everyone who visited, called and commented on the blog yesterday, and to all those who kept Dad in their thoughts and prayers and continue to do so today. I also want to especially thank Jordan and Jane Putnam for their hospitality in allowing my mom and I to stay with them overnight. I would also like to thank all of the doctors, nurses, aids and everyone else who have been taking care of my dad over the last year, and the last couple of days. Almost without exception, they have been extremely kind, caring and willing to answer any of our questions and explain everything they are doing to us. It makes such a big difference to be able to at least understand what is wrong, what they are doing to fix the problems, and what all the machines that are plugged into Dad are doing and measuring. Thank you!

Last night around 8:30 p.m. we were told that Dad had spiked a fever of 104ºF, and his white count was at 19,000 (it should be between 4 and 8K) due to the infection in his body. The theory is that he had a latent infection prior to the surgery on Monday, which the body was fighting until all of the stress of the procedure compromised his ability to do so. They are currently treating him with a powerful broad spectrum anti-biotic as well as an anti-fungal, and then as soon as the blood cultures return (hopefully some time today) and they know what the infection is they will start treating it with a more targeted medicine. When we arrived this morning, the nurse informed us that his fever was gone, his white count was at 12,000, and gave us some other good news which I will address below.

One of the main problems Dad has is what is called Adult Respiratory Distress Syndrome, which means both of his lungs basically completely deflated and couldn't function properly. In order to get them back to normal, the doctors put him on a respirator at a very high pressure in order to re-inflate them. Because the pressure is so high, and because the respirator is set to such a high number of respirations per minute, it feels very unnatural to Dad (or anyone) and the body naturally tries to fight it. So, in order for the respirator to do its job, Dad had to be sedated and paralyzed chemically so he wouldn't fight against it anymore. It is very interesting to see the different perspectives all of the doctors and nurses have about what is going on and what to expect. Some are optimists and others are more realistic in their expectations. Basically, we can expect Dad to be under sedation for at least two to three more days, and on the respirator for anywhere from one to three weeks - depending on which estimate is correct. While yesterday the respirator was set to 100% oxygen most of the day, it was turned down to only 50% O2 today, which means it is progressing in the right direction.

Because of all the problems he's been having with his lungs, his blood pressure and heart rate have not been ideal. Yesterday his blood pressure was around 80/50, and his heart rate was up in the 140's most of the day. The SICU team tried several different medicines to normalize them, but unfortunately, Dad's body didn't really react very well to any of them, so they kept hovering around those numbers most of the day. However, during the early morning hours he was started on a new medicine that helps the right side of his heart function better, which has been working quite well and his blood pressure this morning is around 100/60 and he has a heart rate of about 117, both moving in a positive direction.

Last night Dad's blood sugar, potassium and creatinine levels shot up, so they have been treating those with medications as well. At its peak, his blood sugar was at 200, but this morning it is back down to 121, and Stewart (his nurse today) said that anything between 60 and 120 is considered good. The potassium and creatinine levels are still too high, even though he has started having more urine output from his kidneys. He may have to have dialysis to take care of those two levels if they don't turn around on their own soon.

An ultrasound was also performed on Dad's heart this morning, just to make sure everything is functioning properly, and the ultrasound tech seemed to think it was. Although my mom had a bit of a scare when the tech mentioned to the nurse that it didn't look like he had endocarditis or anything like that. Well, all my mom heard was "endocarditis" and I could see the instant panic on her face, because that is what my dad's mom had that eventually took her life. I quickly reassured her that the tech had said he didn't have it, and the color soon returned to her face.

Below are some pictures for your viewing:

Here is a picture of most of the tumors that were removed by Dr. Bull and his team from Dad's left lung on Monday

This is a picture showing his vitals at about 11:00 a.m.

This picture and the next are for a general idea of the setup of machines that surround him right now

As you can see, the "tree" of IV medicines is quite large - a total of 11 different items at the moment

Please Pray

2009-03-10T08:41:00.005-06:00

Update: After we gave Dad the blessing, the SICU team came into his room on their morning rounds and told us what is going on. Basically, Dad's lungs aren't working efficiently enough on their own. They're retaining too much carbon dioxide, which is unbalancing his pH levels and making it too acidic. Because his lungs aren't working correctly on their own, he has been put under heavy sedation and paralyzed from the neck down so that the respirator can take care of breathing for him.

His lungs are also retaining too much fluid. In order to offset the fluid, he is being treated with Lasix, but his kidneys aren't functioning properly either so that's complicating matters even more. When I asked one of the doctors if he was optimistic about the outlook, he said that he just can't tell right now. He said that Dad is walking a very fine line right now, and they are just trying to find the balancing point. The next 24 to 48 hours are critical and the doctors will be able to tell a lot more after they have passed.

Original Post: We know that there are many of my dad's family members, friends and colleagues who continuously pray for him and have him in their thoughts. We are asking that you especially do so today, as things aren't going as well as hoped after the surgery. All day yesterday, Dad's heart and breathing rates were much higher than the doctors would have liked them to be, and the trend continues today. In order to better measure what is going on, and to help them get the rates back down where they need to be, the doctors are inserting a catheter into Dad's heart this morning. Mom, Mariah, Enrique and myself are heading up to the hospital and I'll let you know as we learn more. Thanks to everyone for your unbelievable generosity, love and support through this entire ordeal.

Lung Surgery #2

2009-03-09T07:44:00.005-06:00

10:45 a.m. – Dr. Bull just came out and said that the surgery is complete. Everything went well, but they had to remove approximately 50% of his left lung in order to get all of the nodules (about 15 of them). The doctor actually said that if his right lung had been whole he would have rather just removed the entire left lobe, but since that wouldn't leave him with enough capacity b/c of what he lost in the last surgery, just cutting out the individual tumors was the best option. We're now just waiting for him to recover enough for us to go see him in the SICU, which will take about an hour and a half. He'll also wake up with a tube down his throat as he isn't awake enough to remove it yet.

9:40 a.m. – The nurse called again and said that it would be at least another hour. She also mentioned that they have already removed several "specimens", and that every thing is still going smoothly.

8:45 a.m. – One of the nurses in the surgery room called and said that it is underway and everything is going well so far.

7:45 a.m. – Hello everyone. Today's surgery started very early. Jim, Patti, Clayton and Makell had to get up at 4 a.m. this morning to make it to the U of U hospital by 6 a.m. Coleton and I (Clint) arrived at about 7 and Mariah just arrived. Jen is working, and Enrique is staying home to take care of Boston and Roman. Dad was taken from his prep room at about 7:30 a.m., basically right on time, and we'll hear from the nurse in the surgery room in about an hour. One positive change from last time is that Dad was able to receive a nerve block, so his pain should be much more manageable this time around.

SURGERY - Date set for next round

2009-02-26T11:15:00.005-07:00

Patti and I met with my cardiothoracic surgeon yesterday. He felt that I was doing well and that I looked well. We talked about the next surgery and he decided that Monday, March 9th would be the date he will go after the tumors in my left lung. So that is the plan now, less than two weeks away. I cannot even begin to explain the emotions that come up when I think of going through this again. With God's help, all is possible.

During our conversation with the surgeon yesterday, I learned some things about this first surgery that I did not know. Of course, he tells me that he had this conversation with me while I was in the hospital, but I don't remember any of it, so this was all new to me.

Essentially, I lost about one third (1/3) of my right lung during the operation. The largest tumor, the one he reported was about the size of a baseball, had progressed beyond lung tissue and was invading the area in my chest called the mediastinum. This is the area between the two lungs where the heart, large blood vessels, wind pipe, esophagus (food passage), thymus (a gland), lymph glands and such hang out. The doc reported that the tumor had invaded the thymus gland and the phrenic nerve (goes to the diaphragm) so those were removed as well as the tumor and any lung tissue that appeared to have disease in it. No wonder it hurts to take a deep breath now.

In my last posting, I included a picture of some of the lung tissue that was removed, but I wasn't sure what it was. So, I'll post it again with another one showing the major resections of lung tissue from this first surgery.

The first picture is the one I posted previously. This is the largest section removed and is the one that was invading the other structures described above and described as being about the size of a base ball. The second image, with two pieces of tissue shows what was removed from the lower lobe of my right lung. Both of these pieces contained tumor. If you click on the images, they will enlarge and you can see the rows of staples along the edge of the tissue where it was cut away from healthy tissue.

We read the pathology reports yesterday and learned that all surgical margins from this operation were clear meaning that the diseased tissue was all contained within what was removed during the surgery. A great blessing.

Thanks so much to everyone for your continued prayers. Your prayers and blessings from God are what keep us going and give us strength to face the next day. God bless you all.

Jim & Patti

I'm Still Alive

2009-02-20T13:34:00.011-07:00

Dear friends and family, I am alive. There were a couple of moments when I doubted whether I'd make it or not, the recovery has been better than I had feared, but rougher than I had hoped.

I was discharged from the hospital on Tuesday afternoon. Since arriving home, I have struggled for physical strength and emotional stability. Thanks to my eternal companion, I am finding both.

I have no recall whatsoever of events on Wednesday following the surgery. I was on heavy doses of morphine and ketamine for pain control. Normally, in this type of surgery, the anesthesia and pain teams like to place what they call a thoracic block - about the same thing as an epidural when a women is having a baby - to provide pain control after surgery. This obviously would have been higher up in the spine than that done for having babies. Anyway, my blood platelets were still low enough that the pain team didn't feel comfortable doing it as the risk of complication would be too high. Thus, I ended up being heavily sedated for a couple of days.

I recall very little of Thursday either - I was still under the influence. Patti tells me that I was quite conversant and that I spent a great deal of time promoting the benefits of a career as a PA to a nurse that was thinking about PA school.

I also recall seeing a good freind of mine from my fire department days - 20 years ago - who is now the fire marshal at the hospital. I guess I happened to see him walk past my room so I called him in to visit. I remember the fact that I saw him and we visited, but I have no recall at all about what we talked about. Sorry Dave!

Thursday afternoon, I was transferred from the University of Utah Hospital to the Huntsman Cancer Hospital via ambulance. Clint already mentioned that in his post. My purpose in mentioning it is that I DO remember that. It was uneventful other than somewhat painful to move from bed to gurney and then to another bed.

I have a large incision on my right upper back. It is healing well and isn't too bothersome for the most part. If I bump it or something, I definately know that it is there.

I had two chest tubes hanging out of my side for several days after the surgery. I think it was Sunday that they finally took them out. Now that was an experience. Bandages were removed that had been in place since the surgery. Sutures holding the two tubes in place were cut and the PA from the cardiothoracic surgery team said, "take a big breath and hold it." Out came the tubes with one long pull. I was amazed to see how much of the tubes were actually inside my chest. I'll include some pictures below. The best way I can describe the sensation of having them pulled out would be to compare it to being turned inside out.

After the tubes were out, I seemed to improve a little each day. I was on oral pain meds after the second day from surgery - Friday I guess. My biggest challenges were coughing. That hurts like the dickens and on one occasion while I was letting myself recline gently into my bed and trying to protect my tubes and incision, I coughed really hard and felt something terribly painful in my chest pop. Right along my breast bone on the right side, right at the bottom where ribs attach, I felt like I had been shot. To this day, this spot is the source of most of my pain. It hurts to move, to breathe, to laugh and most of all to cough. I also found that the hospital beds are really hard on my back. I have had the worst back ache since the surgery. That has been my biggest challenge. I just can't seem to find anywhere to get comfortable. Either the front or the back of me just aches intensely.

Yesterday, out of stupidity or something, I skipped a dose of pain medicine. Wow, did I ever pay the price for that choice. It took a couple of scheduled doses of pain medication after that before I got back on top of it. Last night was probably the best night I have had since the surgery and today, for the first time, I am finally starting to feel a little better.

I struggled with oxygen levels at the hospital. As long as I was on oxygen, my levels were fine. Every time we tried to get me off the oxygen, my blood oxygen levels would drop and I'd have to go back on the oxygen. When it came time to send me home, they sent an oxygen bottle with me and told me to stay on it for a week. So now, I am dragging this long tube around behind me that is attached to a machine in the livingroom and blowing oxygen in my nose all the time. I don't mind the oxygen, but the tube over my ears really makes them sore.

Not much else to report at this time. I spend most of my time trying to get comfortable. My digestion has been a little messed up, but that will improve with time I am sure. Here are some pictures.

Here is a picture of part of the lung/tumor resection.

Wednesday in intensive care at the University of Utah Hospital.

Thursday in "Specialty Care" at the Huntsman Cancer Hospital. Some of my family came by for a visit: My brothers Mick and Derek, my sister Melody (from California) and her son Jordan (attending law school at the Univ. of Utah).

Getting ready for chest tube removal. My head is at the left with my right side up in this view. My new incision on my back and the chest tubes hanging down on the right.

A "better view." Incision on the back, chest tubes below. There are sutures holding the tubes in place that had to be cut. The long sutures were placed at the time of surgery and will be used to close the holes once the chest tubes are pulled out.

Here is a picture of the chest tubes once they were taken out of my chest. You can see where the sutures are that were used to hold them in place. These were at the skin level. Everything above the sutures was inside my chest. Oh joy! No wonder it felt so good when they pulled them out.

And finally, here is a picture of Bill Wong, PA-C that removed my chest tubes and also provided post operative care for me. A great guy!

Post Op Day 2

2009-02-13T12:27:00.003-07:00

Jim and I are sitting in his room at the Huntsman Cancer Hospital. For anyone who has not seen one of these rooms, they are absolutely amazing. They are more like a nice hotel than a hospital room – except for the tubes, machines, and bed of course. From the hardwood floors, to the more than adequate square footage, to the excellent room service, we couldn't ask for a better place. He was able to move here yesterday, but had to come via a three-minute ambulance ride, even though the U of U hospital and the Huntsman Hospital are right next to each other and connected by a couple of indoor walkways. Apparently it is protocol, just in case something happens during the transport.

I (Clint, Jim's son) am still posting because the pain medication Jim has been on has been really fogging up his brain. He attempted to post something yesterday but couldn't really focus and kept falling asleep as he tried to concentrate. The doctor's have permitted him to stop taking Morphine and Ketamine, and to begin taking Lortab, so hopefully he will be able to start thinking more clearly very soon.

Yesterday Jim's blood sugar was at 179 (it should be between 60 and 100), so he had to receive a shot of insulin to get it back down to normal levels. They just took his level again a few minutes ago and it was 114, low enough that he doesn't have to take more insulin. He still has a chest tube, but the volume is steadily decreasing. Once again, we as a family want to take the opportunity to thank everyone who reads this blog and supports my dad and the family with calls, emails, comments, prayers, donations, and everything else. It is amazing, and truly moving, to see how many people love and care about my dad. We'll keep you updated as his recovery progresses.

He's Out!

2009-02-11T11:46:00.003-07:00

The surgery is already complete and everything went well. The surgeon feels that he was able to get all of the tumors, including a piece that was starting to grow into the fat surrounding Jim's heart. It was definitely a good thing that he had the surgery now and not later, or it would have soon taken over the heart. The surgeon also removed the remainder of Jim's thymus (Jen says it is used when humans are young to develop their immune systems).

Jim will soon be taken to the surgery ICU where he will need to stay for at least 24 hours. Once he is coherent, we will be able to go visit him, but the doctor said we would have to give it about an hour and a half.

I will post some pictures of the tumors (and chunks of lung) that were removed a little later, for some reason they aren't uploading right now. The surgeon said that the main tumor was about the size of a baseball.

The "Right" Side

2009-02-11T09:59:00.002-07:00

Jim's surgery is just getting underway, even though they took him back over an hour ago. He was in good spirits while in his waiting room, and is anxious to get this behind him. The anesthesiologist came out and told us that he is doing well. He will be breathing on only his left lung throughout the procedure - this is accomplished through a special intubation tube, which actually has two separate tubes. The two tubes allow the surgery team to only inflate the lung they want. All we can do now is wait, and it will probably be a couple of hours before we hear anything. Thank you to everyone who is fasting and praying on his, and our, behalf today.

SURGERY - Here We Go!

2009-02-10T15:14:00.002-07:00

OK, we got the final word this afternoon. I am scheduled as the first case for my surgeon, 8:30 a.m. tomorrow morning. I was instructed to be there by 7:00 a.m. to check in at the registration desk. That means that Patti and I and the kids have to leave here about 6:00 a.m. to drive the 45 miles to the hospital. Hey, it's better than having to check in at 6:00 a.m. like we've had to do a couple of times before.

Yesterday (Monday) was pre-op day. I had some blood work done at the cancer hospital in the morning and then met with my oncology team at 10:00 a.m. My white count had improved to the 4.2 level (I needed it to come in above 4) however, my platelets dropped to 75,000 - the minimum acceptable for the surgeon. They were at 86,000 on Friday. The Temodar cancer drug messes with all of these levels for weeks and weeks after taking it. Since I took five courses of it and the effects are cumulative, well, I guess I can't expect anything different.

I also met with the research coordinator for clinical trials and discussed the trial the oncology team is trying to get me qualified for. It is called ARIAD and is investigating the effectiveness of a new drug on sarcoma. Sounds quite interesting to me. I have 13 weeks from the last dose of Temodar to start the program, so I'll have to recover from surgery quickly to get started on it. I think they said that I have until the 27th of March to start. If all goes well, my second surgery should be on the 11th of March, plenty of time.

After the oncologist, I went to the University of Utah hospital for surgical prescreening. I had another EKG, was examened by a PA by the name of "Tatum" who works on the cardiothoracic surgery team and then I was examened by a Fellow from the anesthesiology department. I had an indepth interview with both of them and with a nurse who asked me about everything in my life. It's amazing what stuff you forget until someone asks you.

Finally, they got a urine sample and took 4 tubes of blood for testing. It is most likely that I'll be getting some blood transfused during the operation, so they have all the tests going now so that they will be ready to go for tomorrow.

Patti is still not feeling very well, but is showing some improvement. She plans on being at my side come hell or high water.

Check back here occasionally for updates tomorrow. Thanks for all the prayers and offers of help.

God blees you all.

Jim

SURGERY - testing my heart

2009-02-07T11:32:00.003-07:00

During the visit with the cardiothoracic surgeon on Wednesday, we discussed my overall health and current medications. I have a scalp folliculitis (pimples on my scalp) that I have had for years. I take a penicillin tablet every night and that keeps it under control 99% of the time.

Also, I have high cholesterol. I have had that for most of my adult life. Actually, all of my adult life - for as long as I can remember. I haven't always taken very good care of it. In fact, I ignored it for many years. I was always of the opinion that I'd rather die of a massive heart attack than rot away of some other disease. (see what I get?)

About 5-6 years ago, I started taking Crestor for my cholesterol and it has worked exceptionally well. Because of my history of high cholesterol, the surgeon wanted to be sure that my heart function was normal. He ordered testing.

Yesterday, I underwent a chemical stress test of my heart. I was given a drug called "dobutamine" while hooked up to an EKG machine and while an unltrasound technician was taking pictures of my heart. Everything went well and the preliminary report was that everything checked out OK.

I am very glad that the nurse and technicians administering the test warned me about one specific side effect of the drug. While it is designed to make your heart beat faster and stronger - the desired effect, it also creates a VERY STRONG urge to urinate. Had they not warned me about this before the test, I'd have been off the table and headed to the nearest restroom. I have only experienced that same intensity related to the need to urinate when I have had a prostate infection (twice in my life).

I have more testing on Monday (blood) with hope that we can move ahead with the surgery on Wednesday. I'll update things when we have the results.

Jim

SURGERY

2009-02-05T10:56:00.002-07:00

Hi to everyone. I am amazed by everyone's kindness and attention. I am often asked when I will again update this blog by family, friends, neighbors and even strangers. Thank you everyone. If by some small measure, someone is inspired or encouraged by what it written here, then this has been worth it.

Patti and I met with the cardiothoracic surgeon yesterday. I had a CT scan in the morning that showed only minimal changes in the existing lung tumors. There were no new lesions and no significant increase in size of any of the others.

The surgeon reviewed the CT images and then discussed his plan. Essentially, next week on the 11th, I'll go in for surgery. This will be at the University of Utah Medical Center in Salt Lake City. The caveat would be that my blood has to have recovered sufficiently by then to allow the surgery. If not, it will be put off until the next week, on the 18th.

He explained that the goal would be to survey the entire lung and remove any suspicious tissue and of course remove the obvious tumors. This would all be done through an incision about 5 inches long on the right side of my chest. I can expect to be in the hospital for 3 to 5 days and then in about a month, return for a repeat performance on the other side. The right side will be done first because that is where the largest tumor is. Check out the CT images posted previously.

It has been five weeks since my last chemotherapy. I am just now starting to feel like I have some strength coming back. Last week was totally exhausting. Each day is a little different. Some days are pretty good and some just aren't. I still have this nasty chemical taste in my mouth that is really annoying, but food is finally getting better and the nausea seems to be easing off some.

God bless you all. We will try to keep you posted on the developments as they unfold. On the day of surgery, I'll ask my son to post updates here to keep everyone posted on how the surgery is going.

Jim

Another Update

2009-01-22T13:59:00.002-07:00

Well, not much has changed. We met with my oncology team yesterday at the Huntsman Cancer Institute and discussed the CT and MRI studies done last week. Essentially, the cancer continues to spread or grow. We knew that.

As reported last time, new lesions have been identified in my lower spine and a new one in my cervical spine was identified in this last study. The good news is that these all appear to have responded to the chemotherapy.

The majority of lesions in my lungs seemed to have responded to the chemotherapy quite well as they have either disappeared or shrunk significantly. However, there are 5 lesions that have not and actually appear to be increasing in size. You can see several of these on the CT images of my chest that I posted several weeks ago. It is these lesions that the sarcoma team wants to get rid of. I am scheduled to see a surgeon on the 4th of February.

Chemotherapy has been suspended for now due to my blood being so messed up (see last post). After I recover from surgery, I will be reevaluated and it will be determined at that time if I will resume chemotherapy and what kind.

In the mean time, there isn't much we can do about anything. Patti is quite stressed and the oncologist even commented about how stressed she seemed to be. As we were checking out and scheduling another chest CT for the 4th, she came up to Patti, put her arm around her and told her that for now, there is nothing more we can do until after the surgery. She then said that we should get out of town and forget about it all for as long as we can. That might be fun.

We have had horrible inversions here with severe smog/fog socking us in and very little direct sunlight or clear skies and terribly cold temperatures. Warm and sunny southern California might be just was we need for a couple of days.

Gods blessings to you all!

Jim

Quick Update

2009-01-20T12:03:00.003-07:00

Here is a quick update. I got a call this morning from my oncologist's nurse informing me that the oncologist has decided to suspend chemotherapy for now. Each time I have undergone this "new" chemo, my blood has suffered some. My white count drops significantly - thus, I've been getting that Neulasta injection that I described some months ago to try to keep the white count up. Additionally, my platelets have dropped significantly. Platelets are the part of your blood that form clots to keep you from bleeding to death when you get cut.

Back in November when I was hospitalized for infection of my central line, my platelets had dropped to 26,000. A normal person's platelets are supposed to be above 240,000. At that time, I required a transfusion of platelets just so they could pull out the infected central line without fear of me bleeding to death then.

Every time I go for a chemotherapy session, my blood is checked and it usually gets above 100,000 or so allowing me to proceed with the treatments. They prefer it to be above 120,000, but the last couple of times, it has been just above the 100,000 mark. This past Friday, my platelets were only about 58,000 or so.

The Sarcoma Team meets every Monday morning to discuss active cases and they decided that suspension of the chemo was in my best interest for now. I was told to see the cardiothoracic surgeon as soon as possible (my appointment for that is February 4th) to discuss surgery to remove the larger lesions from my lungs.

So, that is about it. We are waiting to see the surgeon on the 4th. I have to admit that I am not disappointed about the suspension of chemotherapy. I am just starting to feel semi-normal after the last round three weeks ago. I was not looking forward to the sickness that comes with each treatment.

On another topic, the topic of faith, I am so thankful for everyone's encouragement and prayers. I am thrilled and deeply humbled to be included in prayers of so many. I received a wonderful e-mail today from a physician colleague of mine that I haven't seen for a year or so informing me that I had been included in his prayers since he had learned of my cancer. What a wonderful blessing it is to be included. I am so appreciative.

A wonderful cousin of mine sent me another wonderfully inspiring message that I'd like to share with you as well. Here is a link that you will have to copy and paste into your browser to connect to. http://www.youtube.com/watch?v=u2AibapAJfE

It is amazing and really exemplifies my feelings about my faith and trust in Christ. Please enjoy.

Jim & Patti Meeks

Happy New Year!

2009-01-09T11:35:00.008-07:00

It has been nearly a month (but not quite) since I last posted anything here on this blog. Sorry for those looking for updates more frequently. I apologize.

One week ago today, I finished my most recent round of chemo and it has really taken a long time to recover from it. Every round seems to take more out of me. I am scheduled for the next round on the 21st of this month. As you can imagine, I am really looking forward to it.

The next round will be the 10th chemotherapy treatment to date. I had two last Spring which were largely ineffective and then after the excision surgery in July, I have had 7 more to date with the 8th coming the week after next. As of now, this is the last chemo treatment that is planned. I guess that I shouldn't complain. The last time I was at the infusion center, there was a gentleman there for his 63rd chemo treatment.

In the mean time, another CT scan of the chest was done on 12/22/08 for comparison to the images done on 11/14/08. In my last post here, I provided some images from September and November for comparison. Today, you will find images from November and December for comparison. They are at the bottom of today's posting. The image on the right is the November image and the one on the left will be the December image.

Basically, we continue to see improvement in the size of lesions and no new lesions have developed anywhere in the lungs. An MRI was also done of my arm pit and there is no evidence of any cancer there. In the lungs, there are a couple of larger lesions that have either remained stable in size (didn't shrink) or have actually enlarged slightly over time. The plan for these is to have them surgically removed sometime in February or March. We are scheduled to meet with a cardiothorasic surgeon on the 4th of February to discuss the surgery.

Within the past month to 5 weeks, I have noticed some new symptoms. At first it was quite subtle and so I didn't pay much attention to it but with time, the symptoms became more pronounced and predictable. What I found was that I was having the sensation of a mild electrical shock that would shoot down the back of both of my legs all the way to the soles of my feet. At first, I couldn't put my finger on it, but as it became more noticeable and more frequent, I realized that it was happening when I looked down with my head. You know, like to look at my watch or a plate of food or something. So now that I have that figured out, I can just look down any time and zing, there it goes. The more abrupt I move my head, the more pronounced the symptoms.

I discussed this with the medical team at the Huntsman. I have a long history of low back pain and problems with discs and scoliosis and such, so an MRI of my lumbar spine was done. This revealed that there are a number of lesions in the spine. Remember that I had one in my mid back previously that was treated with radiation - it has been stable since then. These are all new and so an MRI of my cervical spine (neck) is scheduled for next week as well. Here is the text of the MRI report related to this new finding; "Numerous enhancing well circumscribed lesions in L1, L2, L3 and L5 vertebral bodies. Partially visualized, there is a lesion in the left ilium. These lesions are worrisome for metastatic disease in a patient with history of sarcoma."

In layman's terms, this means that there is probable spread of the cancer to the lower spine and possibly to the pelvis (ilium). After reviewing the images, the Sarcoma Team feels that the lesions are not active and have responded to the chemo so far. The scan of my cervical spine will check for spread there. At some point, another PET scan will be done to see what the overall picture is. Remember, previous PET scans were done to determine the extent of cancer spread. That is where the lung lesions and spinal lesion were first identified.

It still hasn't explained the electrical zing and so that will be worked up as we go along. Anywhere along the spine can have a lesion and it even may be due to the radiation therapy on the T8 lesion last Spring.

So, here are the latest images (on the left) of my lungs with comparisons to the ones from November on the right. If you click on each image, it should enlarge for better detail. Enjoy.

God bless you all!

Jim

Merry Christmas

2008-12-19T11:59:00.004-07:00

In about one week, it will be Christmas. I want to once again express my deepest appreciation to everyone for their unbounded kindness to me and to my family these past 10 months. I cannot believe that this battle has been going on this long.

When this all started, I had imagined that I'd be out of work for a few months for surgery and treatment. I didn't realize the time all of this would involve and how it would drag on and on for so long. My employer has been wonderful and has assured me that I will have my job when I am ready to return to work. That is so wonderful. The discouraging part is that I still don't have any idea when I will be able to return to work.

In the mean time, I am scheduled for my next chest CT scan on Monday, the 22nd of December and the next round of chemo starts on the 29th, the following Monday and another chemo session about three weeks after that. For now, that is the only concrete schedule I have.

Twice weekly I go in for blood work to monitor my white blood cell count and my platelets. Monday of this week, my platelets were 106,000. Yesterday they had dropped to 88,000. The normal range for adult platelets is supposed to be around 150,000 to 450,000 and most people hover somewhere in the middle.

My platelets have to be at least 120,000 to allow for the chemo therapy - to assure that I have enough to endure the chemo again. That is why I have to have so many blood tests.

Getting my blood drawn isn't such a big deal. I have this central line in my chest and so I go to the ER where I have worked in the past and they draw the blood samples directly from the central line so I don't have to get poked so much.

Everywhere I go with my "hair hat" I get interesting and questioning looks. One of the ER docs particularly likes it and if I wear another hat, he asks where my hair hat is. So, last week, I wore my hair hat when I went for one of my blood draws and stuck it on his head - here's a picture. He loved it. This is the same doc that was there the day I went in with my infection and ended up in the hospital on IV antibiotics for four days. He's a great guy and I always loved working with him and the other docs in the ER there at Timpanogos Regional Hospital.

It is also great to go to the ER for my blood work so that I can visit with the great nursing staff there and kind of keep in touch with all of the goings on of the place. I really miss being able to work and take care of patients. It has been such a big part of my life for so many years in so many ways.

So in the mean time, I would like to take this time at this wonderful Christmas season to thank everyone for their prayers and expressions of faith. I know that without these prayers, I would be much worse off - health wise and spiritual strength wise. I so appreciate your expressions of faith. I cherish these with all my heart and thank everyone of you for including me and my family in your prayers.

A very good PA friend sent me the following link to a wonderful internet presentation on Christ. I hope that you have the time to view it. Here is the link (you'll probably have to copy and paste it):

http://www.OneSolitaryLifeMovie.com

Recently, I was sent another absolutely wonderful link to another presentation on the life of Christ that is profound and available for purchase in book form and on a DVD, but you can view it here as well. Please enjoy! Here is the link (again, copy and paste):

http://mabrystudios.typepad.com/reflections_of_christ/2008/03/reflections-sli.html

With every feeling I can generate, I express my faith and trust in my Savior. At this time of year, I so appreciate that I live in a country where I can express that faith without fear of prejudice, persecution or harassment. God bless everyone of you and may you have the very best of Christmas in your home and with your family and friends.

Jim & Patti Meeks

Slow Progress, But Progress

2008-12-04T11:18:00.006-07:00

Slow as it may be, it is still progress. I am sitting in the infusion center today, receiving my second infusion of this round of chemo. For those of you keeping track, this makes my 8th infusion. I had two in March and April. Those were followed by 5 weeks of radiation therapy and then surgery on the primary tumor in July and then I had two more rounds of chemo infusion.

It was after those two infusions that additional cat scan studies showed that the chemo I was receiving was doing nothing for the cancer that has spread from the primary tumor under my right arm to my lungs. The decision was then made to switch to different chemo drugs as a trial.

What I have come to learn through all of this is that this is all a very slow process with time between treatments that is difficult to deal with. I am used to being busier. Although the chemo doesn’t leave me feeling very well or even capable of doing much between treatments, I’d much rather be at work and being productive – caring for my patients and providing for my family in the way I am accustomed to.

The new chemo drugs seem to be much less toxic mentally, but do leave me feeling quite sick for a week or so after I finish them. I’ve had problems with anemia and very low platelets, which put me at risk for bleeding and such.

Fortunately, the new drugs do seem to be working. As I reported previously, for the first time, it appears that there are no new lesions in my lungs and the previously noted lesions have reduced in size.

As I understand it, the radiologists have been measuring several of the larger lesions that are easy to identify on the CT studies. As time has gone forward, these have all increased in size from study to study and there had been a new crop of smaller lesions appearing throughout both of my lungs – too small to measure, but quite obvious on the images.

I have attached three imaged here to today’s posting. These are comparison views with an image from September on the left and an image from the most recent CT the first part of November on the right. Note the measured lesions on both images and see the difference in those measurements. There is some significant improvement.

Since these are 2 dimensional images representing 3 dimensional lesions, there is some formula that the oncologist here uses to estimate volume. I have long forgotten my geometry to be able to do that.

As we met with the oncology team yesterday, the oncologist (Dr. Lei Chen) was quite excited with the improvement in the CT scan findings. Because of the apparent success of this new treatment, she plans on two more infusion of which I have already had four – this will make a total of six with the new stuff and four of the old stuff. She informed us that this will be the maximum lifetime allowable of one of the drugs (doxirubicin) that has been used in both treatments.

I am scheduled for another CT scan on the 22nd and my next IV infusion on the 29th, 30th and 31st of this month. What a way to end the year. Three weeks later (or so), I will get the last infusion.

We were informed yesterday that the next step will be surgical removal of the residual lesions (the bigger ones) in my lungs. This will involve two surgeries, one for the left side, one for the right side. I don’t know in what order they will be done nor do I know exactly when they will be done. There has to be some time after the chemo, just like my last surgery, to allow things to settle down so that skin will heal and so forth. The idea behind this surgery is to reduce the overall “tumor burden” as much as possible.

Once again, I have to express my absolute thanks and appreciation to EVERYONE that has been with us throughout this process (slow as it is). Without the faith and prayers of all of you, we are sure that we would not be where we are in this – making progress!

God bless you all!

Jim & Patti

Prayer

2008-11-19T11:24:00.000-07:00

“Dear Jim,

We have never met. We do not know one another yet we are brethren in Christ, and in occupation. Know that I likely represent countless others who might not post because they do not know you, but I hope it helps to know that we are out here praying for you and your family.

May He bring your perfect healing and a peace that passes all understanding.”

My dear family and friends, how can I ever thank you enough for your prayers and sustaining thoughts. Everyday is a challenge. I battle some discouragement because I never thought that it would take this long to get past all of this. In my minds eye, I thought I’d be back to work long before this. The struggle within is indescribable at times. Yet, when I receive a message like the one I received this morning (above), how can I be impatient or discouraged? I have been so blessed.

I have my sweetheart of nearly 35 years (we met in high school in 1974) at my side. I have my wonderful children, their spouses and our two grandchildren all checking on me, praying for me, lifting me up. I have so many wonderful friends, family and neighbors that stop by to visit or drop off a meal or a treat or call to see how I am doing. I have so many good PA friends around the country that check on me and have helped in so many ways in our time of need.

And then I have these wonderful but anonymous messages from other PAs that I do not know and will probably never meet. Yet the messages of faith and hope are invaluable to me. I so appreciate the prayers and encouragement. Thank you to all.

I have neglected to update this blog for a while because there hasn’t been much to update. I just completed round three of this current regimen of chemotherapy. Although not as psychologically toxic as the previous chemo and somewhat less bothersome in many other ways, it is still difficult. As I think I have surmised before, the effects seem to be cumulative. By that I meant that it seems that each time I get the treatment, the sickness that follows is more pronounced.

I completed the infusion of IV drugs on Friday last week and continued the oral drugs until Monday. However, I spent most of Saturday through Monday in bed. Just as before, exhaustion seems to be the primary side effect. Weakness and shakiness all over are the hallmarks and they tend to linger until just before the next round of drugs. Then there is this darned chemical taste that I cannot get rid of.

Actually, food doesn’t taste too bad while I am eating it, but after, I am left to deal with this nasty chemical taste that just won’t go away. About a week from now, it will start to taper off and I hope to be able to enjoy Thanksgiving dinner with family just in time to go back for another round of chemo the following week.

This last round of chemo was postponed one week due to severely low platelets the week before when I was scheduled to have treatment. That puts me another week behind. Blast it all!

The plan at this point is to complete this round of four treatments without killing me off. I have to have frequent blood draws to monitor my blood. I’ve actually been doing this all along. I just hope that my system can keep up this time and allow me to get the next round of chemo when it is scheduled (Dec. 3 start date). After that, another CT scan will be ordered – probably about three weeks later – to see how the cancer in my lungs has responded.

We were very encouraged with the last CT report and are hoping for more of the same with this next one.

In the mean time, I am trying to suck on strong candy or eat strong flavored foods to cover this nasty taste and make it to next weeks celebration.

God bless you all. Thank you! Have a wonderful Thanksgiving!

Jim

Some Good News

2008-11-05T10:38:00.003-07:00

I am happy to report that I have some good news today, but first a little update on things since my last posting.

After I was discharged from the hospital on the Friday before last - having been treated for the infection in my central line - I have felt pretty darn good. In fact, I have felt better than I have for about a month which makes me wonder if that infection had been brewing for a while.

I have been having blood work on a fairly regular basis after each round of chemo and discovered last week that I am quite anemic with a very low hemoglobin (carries oxygen) of 8.8 (normal is 12.5 to 17) and a low hematocrit of 24.7 (normal is 36 to 50). Additionally, my white blood cells are only 2.4 (normal being 4 to 10) and my red blood cells only 2.82 (normal being 4.1 to 5.6). My platelets (elements that allow blood to clot) were very low in the hospital the week before last - so low in fact (only 26,000) that I had to be transfused with platelets before they would attempt to take out the infected central line. Normal levels of platelets are supposed to be 140,000 to 415,000.

All of this is common with chemotherapy and not unexpected. That is why they have me check my blood often after each round of treatment. The hospital called me Friday and asked me to meet with an anemia specialist on Monday which we did. After a long discussion about this condition, I was given the option for an injection of a medication that boosts production in the bone marrow of these blood products. However the injection is not without risks including blood clots. The funny thing is that on Monday morning while getting showered to go to the cancer hospital for this appointment, I discovered a blood clot in my left calf (lower leg).

Since I have been feeling pretty good since getting the infected central line out, we decided to hold off on any injection and to monitor my blood. Since I don't really feel too pooped out, we can wait. Being tired and run down is the criteria used to decide when to give the injection. You know, "treat the patient, not the lab results" is the old adage that has served me quite well throughout my medical career.

Needless to say, we spent a great deal of Monday at the hospital making sure that I don't have a deep vein blood clot. That would not be a good thing. The clot I do have is a superficial clot and can be treated with elevation and heat. I does hurt if I push on it, so I try not to do that.

We returned again to the hospital yesterday. My platelets have improved to a level of 73,000 so I was taken to surgery for placement of a new central line in preparation for more chemotherapy. That was done without any difficulty, but I am quite sore today. Previously, my central line was on the right side of my chest. Now it is on the left. Both places are rather sore. They will heal!

I was supposed to start chemo again today, but because my platelets are so low, we have to wait until next week sometime (waiting to hear from the scheduling office) to start. My platelets have to be over 120,000 to start the chemo.

So now finally, the GOOD NEWS. I had my chest CT scan and an MRI of my right arm pit (where this cancer all started). For the first time, it appears that the cancer in my lungs is responding to treatment. All of the previously measured lesions have decreased in size and there are no new lesions at all in my lungs. The lesion in my spine has not changed and there is no evidence of any tumor in my arm pit. This is all good news. The chemo seems to be working.

I thank everyone, EVERYONE for their prayers of faith. I am convinced that without such prayers of faith and the intervention of my Heavenly Father, this would not have happened. We are very encouraged about the outcome and affirm our faith in God the Father and His Son, Jesus Christ. We are truly blessed with so many good friends and family. We so appreciate being included in your prayers and fasting. This is a miracle in our lives. Thank you to all.

I don't know when we will do further CT scans or MRIs, but I still have two rounds of this chemo program to go through. I suspect that another CT and MRI will be done then. What happens after that hasn't been discussed yet. My hope is to be able to return to work and service of my fellow man.

Many, many thanks to all!

Jim

A new experience

2008-10-25T14:11:00.002-06:00

I have a list, and I’m pretty sure that everyone else probably has the same list. I call it my “worst experience of my life” list. The problem is that I keep adding to it. And of course, I now have a new experience to add to this list that for some reason, just keeps growing. Let me tell you about it.

Tuesday morning, I got up looking forward to a good day. Monday night, I had taken my last dose of oral chemo medication for this round of therapy. Typically, after this, I can start looking forward to a week or so of feeling better before I start the next round of chemotherapy. The day began well enough. I went to the hospital to have my blood drawn as I am supposed to do twice a week after chemo. I returned home, relaxed for a few minutes as Patti got ready to go over to our daughter’s house to watch our two grandkids. We try to help out when we can since Mariah (our daughter) works two days a week as an MA in the family practice office where I have worked for the past 6 years.

Anyway, Patti left a little after 8:00 a.m. and I was here alone (Patti always worries about leaving me alone here asking me if I am sure I will be alright). I checked a few e-mail messages and answered a few then went into the kitchen to have a bowl of cereal. I ate well, watched a little TV news, a couple of minutes of “The Price is Right” and then called over to the hospital to check on the blood work results. At about 10 minutes after nine, I began to feel a little chilled. I checked the thermostat - the temperature was 72 degrees. Within minutes, I was shaking all over and didn’t feel very well. I decided to crawl back into bed to get warm for a while.

Shortly, I began to experience the most violent and severe shaking I had ever experienced in my entire life. I don’t think in all my years of medical practice that I have ever seen anyone shake as much as I was except maybe in a grand-mal seizure. This shaking went on forever. I finally called Patti and told her I needed help. I ached all over as if someone had beaten me with a ball bat and I was still shaking so uncontrollably that I just couldn’t stand it. Patti arrived just before 10:00 a.m. and at just about that same time, everything started to settle down.

Patti swears that she will never leave me alone again. She says that I looked horrible. She called the oncology nurse at the Huntsman Hospital in Salt Lake to report what was going on. They advised us to go to the ER here in our area to get checked.

It took every ounce of strength to drag myself out of bed and get to the car. I had been shaking for nearly an hour. We went to the ER at Timpanogos Regional Hospital in Orem, Utah, the ER where I had moonlighted as a PA for nearly 4 years. I know most of the docs there and many of the nurses and this is where I go for my blood draws because of my central line. They can draw blood right out of my line without having to be poked in the arm twice a week.

So, ultimately what happened is that I had a fever of 102.5 degrees. Blood cultures were taken (one sample from my central line and another from my arm) and I was admitted to this hospital because when the ER doc called the cancer hospital, they had no beds. I was able to request a very good internal medicine doc that I have worked with and known for a number of years as my admitting physician since I haven’t had a primary care provider forever. There are advantages to working in the medical field. The hospitalist that was on call for that day isn’t one of my favorite people – I won’t go into details about that, but I was thrilled that the doc I asked for was willing to admit me.

I was placed on IV antibiotics (Imipenem) and placed in an isolation room on the 4th floor of the hospital. I ran a fever for another 24 hours but felt much better on Tylenol. My initial blood pressure in the ER was 87/59 so they gave me fluids as well.

Ultimately, the blood culture drawn from my central line grew out bacteria known as streptococcus viridans. This was interesting because the blood culture drawn from my arm showed no sign of bacterial growth so the infection was within my central line. It has been in place since February. The next task was to get rid of the central line.

The concerns for my doc were the fact that I had rheumatic fever when I was 19 and ended up in a hospital in El Salvador for two weeks for treatment and the fact that my mother had bacterial endocarditis (an infection within the heart) that ultimately destroyed her aortic valve and resulted in her having two valve replacement surgeries in the early 1960s when that kind of stuff was experimental. This particular strain of bacteria has the potential to cause bacterial endocarditis. Great. Just what I need at this point in my life.

A wonderful (patient, kind, conversant, jovial, etc.) general surgeon was called in to remove my central line. She worked on it for about an hour and could not get it to release and come out. Try as she might, it was just stuck somewhere. I could feel tugging clear up in my neck as she worked on it. You see, the central line is a plastic tube that enters my chest at about heart level just to the right of my breast bone, tunnels up through the skin, over the top of my collar bone and then enters my jugular vein and into the top chamber of my heart. This is the way I receive fluids and drugs for my chemotherapy.

Finally, the surgeon decided to call one of the vascular surgeons in town. She explained the situation to him and he showed up in about twenty minutes. After about 30 minutes of him gathering supplies and getting his gloves on, putting on sterile drapes and so forth, he took one look at the central line, said, “Oh, I see the problem.” I heard a snip and felt nothing. He pronounced that he was done and I thought he was pulling my leg. He reassured me that he was indeed done and that was that. He put on a bandage, recommended that I not cough, sneeze or lay flat for 24 hours and let him know if I needed an new line put in because he’d be happy to do it in about a week if requested.

As a result of having my central line out, I had an IV started in my right hand to allow for infusion of the IV antibiotics and fluids. I had an echocardiogram of my heart Friday morning – results still pending.

I am feeling much better. In fact, I feel better now than I have for about a month which makes me wonder if this infection wasn’t smoldering for some time.

I am already scheduled for placement of a new central line on the 4th of November at the Huntsman Hospital. I will also be getting a new chest CT that day to see if the new chemo drugs are having any effect on the cancer. I’ll also have an MRI of the primary tumor site to see if there is any discernable regrowth at the excision site.

The worst part of this - that I am adding to my “list” - is the violent and uncontrollable shaking that started on Tuesday morning. I have never before experienced anything like that and I hope to never do so again. I hope my list is completed. I would be just fine with that.

Many, many thanks to everyone that helped! The ER staff, the hospital staff, my internal medicine doc, the general surgeon and the vascular surgeon, family and friends who called. I am so thankful for their kindness and genuine care. I am so blessed.

Jim

The Latest Round

2008-10-17T09:45:00.008-06:00

Once again, good morning to everyone. I so appreciate the kindness of everyone that checks this blog. Your comments and well wishes are so welcome. We so appreciate the visits, calls, food baskets, cards, singing on the porch and every act of kindness. We are truly blessed by good neighbors, friends and family. Thank you.

I just completed another round of chemo IV therapy on Wednesday and continue to take the oral drugs through next Tuesday. It seems to be going a little better this time. I prepared in advance for the digestive issues and so far, I seem to be doing better without all the upset stomach and bowel issues. I can't say for sure how it will go until I finish taking all the oral drugs. That remains to be seen.

I certainly appreciate being able to come home from the hospital after the IV infusions. The previous chemo was so much more bothersome and staying in the hospital for 5 days each time was not my choice for spending time. It is much better to be in my own bed with my sweetheart every night.

The routine now goes like this. We leave here early on Monday morning and arrive at the Huntsman Cancer Hospital Infusion Center a little after 8:00 a.m. After checking in, the nursing staff draws blood to run some labs to be sure that I can tolerate the planned chemotherapy. The easy part about that is that I still have a central line in my chest that was placed there in February. They take the blood out from there and put the chemo drugs in there too. No needles in the arm.

Fortunately, I have never had to have treatments put off yet, but the other day, a young lady next to me was sent home for a few days so that her platelets could recover. How disappointing that must have been. I can only imagine.

Once my blood has been cleared, the nurses (all of whom have been absolutely wonderful) have to pre-hydrate me with fluids and pre-medicate me with steroids and anti-nausea drugs. Following that, I get the first bag of chemo (Doxil) which takes an hour. That is followed by the second chemo drug (Cisplatin) that takes another hour to run in. Finally, both of those are followed by more hydration fluids which have to run in over another two hours. That is the plan on Mondays. Tuesday and Wednesday aren't so bad because I only get the second IV drug on those days so the treatment is an hour shorter on those days.

My poor sweetheart really gets tired of the sitting (so do I), but she is right there by my side for it all. What a trooper! At least I can lie back and snooze some. Do you like my "hair hat?" My good friend from Texas brought that to me. I get a lot of great comments on it.

On Monday, after the chemo was completed, we took a little walk over to my Urology Clinic at the University Hospital to visit the staff I work with there and to give them an update on the treatments, etc. The two hospitals (Huntsman and the Univ. of Utah Medical Center) are connected by tunnels and elevators, so it is a pleasant stroll to get there. It is always so good to see my colleagues there.

It was fun to discover that the powers that be finally got my name on the clinic sign. I had wondered when they were going to do that. I worked there for 7 months with out it. Now that I've been on sick leave for 8 months, there is my name! Imagine.

I was able to access the images of my last chest x-ray and chest CT scan. I'll post a couple of those images here for you to see.

Essentially, what you will see is one CT image with a big circle around a lesion in the front of my chest. This is a lesion that went from about 5 millimeters in size to about 19 mm in a matter of a few weeks while I was on the previous chemotherapy. The second CT image shows a new lesion in the left lung field that wasn't visible previously. Those two items alone were enough for the oncologist to switch treatment to this new program. The chest x-ray is much harder to see, but I believe that if you click on it, it will enlarge and you can see some faint circles or blotches throughout the lung fields. Well, these are the cancer lesions I am now fighting to get rid of. In the CT images, basically most everything that is white and round is a cancer lesion as well.

This is all so fascinating to me medically but challenging to us personally. I have to find some balance in all of this.

Jim

Faith, Hope, Patience

2008-10-06T11:58:00.003-06:00

Two weeks ago today, I started the new treatment program. Although it hasn 't been anything like the inpatient treatments, it continues to pose it's own challenges.

The inpatient treatments as I have explained previously were quite distressing in the psychological aspects. This fortunately is not the case with this new program. I am most grateful. Especially since I go back a week from today and start it all over again.

Primarily, I have been dealing with a poor appetite and fatigue again. I had some difficulty sleeping a few nights, but that was fleeting and for the most part, I am sleeping well again.

I do have to deal with constant chemical taste in my mouth. This is different from the "rusty nail" taste I had with the previous treatments. Instead, I always taste some kind of unpleasant chemical that I am unable to describe. When I try to eat, food for the most part tastes pretty good. Afterward however, I am left with this taste and a sour stomach.

My bowels haven't reacted very well either this time. I feel a little bloated all the time and feel a constant need to move my bowels. For a while - the first few days - I was quite constipated, but that has resolved and now leaves me with frequent trips to the bathroom to only pass small amounts of stool and lots of gas every time. It's better than being constipated but the repeated efforts to try to go are getting old.

Generally, I feel fairly well, just profoundly tired. I walked out to the mailbox the other day and by the time I turned around to come back to the house, Patti had to help me because I became all shaky and tired. I have improved though and felt well enough to go to Home Depot with my little brother this past Saturday to get some stuff. While I was standing there, not doing anything, just looking at stuff on the shelf, I got hot, sweaty and all shaky. That lasted about 2 - 3 minutes and then resolved. It was my first trip out of the house in a long time other than to go to the hospital for blood work which I do twice a week. It was good to get out and do something, but it took a toll on me. I had to rest when I got home.

This is still all so foreign to me. I used to get up at 5:00 a.m. everyday and be busy all day and all evening. I'd get to bed about 11:00 p.m. and then start the same thing all over again. Now I feel lucky to do the few things I do without collapsing or having to use a walker.

Hopefully, the end is in sight. Our hope is that this new treatment program combined with all the wonderful prayers and faith of our friends and family will soon bring the response we are looking for. We put our faith and trust in God and in our Savior. After all, His love is paramount and all encompassing.

I do not stress over this. I do not spend any time wondering "why me?" Actually, I have never asked that questions. I figure after all the suffering and pain I have seen in my days as a paramedic/firefighter and as a PA, it's just my turn. I take it one day at a time and feel so blessed by so many people. I just want it to be over so I can go back to taking care of my family and my patients.

The wonderful phone calls and e-mails, and cards, and prayers and faith and everything are overwhelming to me. A wonderful friend and neighbor brought by a gift just this morning - a framed quotation that says, "God didn't promise days without pain, laughter without sorrow, nor sun without rain . . . but he did promise strength for the day, comfort for the tears, and light for the way." How wonderful. I am honored to be remembered and so blessed by so many.

Jim

New treatment update

2008-09-26T15:44:00.002-06:00

It has been difficult to get motivated this week, at least about writing. The chemo infusion started on Monday and followed on Tuesday and Wednesday. Coming home every day was the real blessing. I tolerated the infusions fairly well and had very little side effects. On Tuesday, day two of this new treatment program, I also started taking the oral medication at night. Again, I had little difficulty with this either.

Yesterday was a pretty good day. I was able to keep myself busy with little projects here on the computer and reading news stories, but I began having a lot of heartburn. That has subsided today fortunately.

I am supposed to drink 2 - 3 quarts of fluids every day as well. That is a real challenge, especially when I then have to make 4 - 5 trips to the bathroom during the night. I tried to be a good boy and drink a lot yesterday, but then last night was often interrupted by trips to the bathroom. At least I know that my kidneys are working well. The price I pay for trying to do what I am asked to do. Needless to say, I have cut back a little on fluid intake today.

The interrupted sleep has taken it's toll on me today. I am tired, weak and kind of shaky all over. I am sure this will pass with the rest I am trying to get.

I don't have much else to report. I am very hopeful that this new concoction of drugs will be more effective. If so, it is all worth the lack of sleep and whatever else comes with it. I have four more days of the oral meds and then on the 14th I restart the entire process all over again.

Additional studies (CT and MRI) are anticipated on or about the 3rd of November to determine if this is going to help. I certainly hope so. I have too much to do to be sitting around waiting for all of this to be over with. I'd really like to get back to work and care for MY patients.

Thanks to all for continued prayers and kind thoughts. We are so appreciative and certainly blessed by each of you.

Jim & Patti

Change of Plans

2008-09-15T16:09:00.006-06:00

Good afternoon to everyone. We have had an interesting day. Unfortunately, the news isn't very good. The CT scan done this morning hadn't been read officially at the time of my doctor's appointment at 10:30 this morning, but Dr. Chen invited Patti and I into the viewing room to look over the images and to compare them to the ones from July 21st, the last one I had done. What we did see was enlarging lesions in several areas of the lungs and a few more scattered new lesions.

What this means is that the chemotherapy I have been getting has mostly been ineffective and I wasn't admitted again to the hospital (YIPPEE!). We discussed options for treatment at this point and discussed several types of chemotherapy that have been used for sarcoma. Not many of which she favored due to being ineffective as well.

Ultimately, Dr. Chen recommended a cocktail of drugs that she has used for sarcoma with some success pointing out that a previous patient with sarcoma in three body areas did respond well to this regimen. This involves no hospital admission, but does require three days of infusion of two of the drugs and taking an oral drug for a certain number of days during each cycle. This process would be repeated every three weeks and has all the same potential side effects; nausea and vomiting, loss of appetite, kidney problems, increased risk of infection, bleeding, ringing in the ears (I've had that for years anyway), allergic reactions and of course, potential for causing leukemia months to years down the road. Oh yeah, hair loss, but I have that problem solved with my Spiffy Jim's Toupee Kit.

I don't know for sure how many cycles of treatment are going to be given. Just like this last treatment program, after two or three cycles, I will have another CT and or MRI to see what is going on with the sarcoma.

The 2 new IV drugs are; Cisplatin and Doxorubicin Liposoma. The oral drug is Temodar. The oral drug is new and we checked with the pharmacy there at the hospital and discovered that our co-pay for this new oral drug will be well over $600.00 every cycle.

This morning, Patti had shirts ready for us to wear that were matching in color. When we got to the clinic, the medical assistant helping us had on scrubs the same color. Now talk about color coordination, who would have ever thought that we'd all show up in the same color. It was quite amusing.

Once again, I express my sincerest and deepest appreciation to everyone for their continued prayers and well wishes. You keep us both going.

God bless you all.

Jim & Patti

Hair alternative

2008-09-10T12:29:00.004-06:00

It is a wonderful blessing to have so many people watching over me. I am so blessed by everyone's messages, well wishes and acts of kindness. Thank you to all.

Today, I have to highlight one of my sisters (I have 5). It is totally amazing to have someone in the family with creative talent. When that talent reaches a point of sophistication that I don't even recognize it for what it is, well, it is awesome.

As you all know, I have lost most of my hair. I still have some stubble on my head, but it was so scraggly that I cut off what was remaining in exchange for baldness. There are advantages to all of this as well. I haven't shaved for a month and I haven't had to go to my barber for 6 months. That is a distinct advantage. With close to 90% of my body hair gone, getting showered is like washing a new baby if you catch my drift. No shampoo, just a quick slick body lather and rinse and I am done.

So here is what my little sister did, she sent me a package last week or so. When I opened it and looked I laughed. She had sent me a "Spiffy Jim's Do-It-Yourself Toupee Kit." Yup, a do-it-yourself toupee kit. What a great laugh. I loved it.

Later in the evening, I was showing it to my youngest daughter (17 - high school senior) and telling her what a great gift it was. Then, I suddenly realized that the picture on the packaging looked like me. I turned it over (which I hadn't done before) and suddenly realized that this wasn 't some off the shelf gag gift, she had created the entire thing herself. I was blown away. It even included a personal message from her. Here are some pictures. (What you can't see very well is that there is a huge mound of BLACK hair right next to the Krazy Glue. Fantastic!)

What a wonderful sister. THANKS SUSAN!! God bless you. You have blessed me!! Personally, I like the mohawk look, but the full head of hair on the right is REALLY tempting!

I think that if you click on the picture, it will enlarge so you can see all the AMAZING detail she put into this.

Cancer progress is otherwise unknown for now. On Monday the 15th, I am scheduled for blood work and a chest CT. Later in the morning, I meet with Dr. Chen (oncologist) to discuss results of the CT and treatment. For now, I am scheduled for another admission that same day, for more chemo.

The decision of whether or not to continue with the current treatment program will be based on the CT findings. If the metastatic lesions in my lungs have not progressed or better yet, have diminished in any way, then we will continue the current chemo. If there is significant growth, then we will talk about alternative chemo treatments. The current drugs I am receiving are what are considered the best for the sarcoma I have. If they aren't effective, then the only option is to try newer drugs that have no track record with sarcoma.

We are hoping that the current treatments will be effective. I'll update this again next week after the treatment decisions are made.

God bless you all. Thank you for everything. Jim

Chemo Still Sucks

2008-09-04T10:49:00.000-06:00

Once again, I am deeply humbled by the many well wishes, phone calls, e-mails, messages and visits. Thank you so much for checking in on me and on my family. We truly are blessed by each of you.

This last go round of chemo has been in some ways more difficult than any before and in a few ways, a little easier. I entered the hospital on the 25 of August as planned and wasn’t feeling too bad at the time. The first couple of days weren’t too bad. The physicians decided to increase my dose of thiamine (B Vitamin) to help with the effects of the Ifosfamide, one of the cancer drugs. What I have discovered is that the neurotoxic (messes with my brain) effects of Ifosfamide, at least for me, seem to be cumulative. Essentially, every time I am given the drug, the effects seem to be stronger.

Thiamine is a vitamin complex that we used to administer to drunks when I was a paramedic years ago. The idea was to help them with mental function by replacing depleted vitamin B which was often missing. Anyway, my docs at the cancer hospital increased the dose because I had told them I felt it was helpful.

Previously, I had suffered from disturbed sleep and a fog that seemed to settle over me making doing tasks such as reading or writing very difficult. On my previous admission, the fog seemed less bothersome so they decided to increase the dose during this last admission. It did help with the fog, but the nighttime problems continued to be a big issue for me.

The very first time I had chemo, on the second night in the hospital, I experienced visual flashes all night long. It was like viewing a slide show. Vivid images were flashing by every second, all night long. I was able to get through the night, but it was difficult. I asked for some Benadryl the next night and that seemed to help although not eliminate the problem. So, I took Benadryl every night for the rest of that stay.

On my next admission, I had more of the same and once again Benadryl seemed to help. They did send some lorazepam (a tranquilizer) home with me that time and I tried it once only to find that it was much less effective than the Benadryl. The brain fog was quite evident during and after those first two chemo sessions.

So on the 4th of August admission, we started the thiamine and that really seemed to help the fog brain during the day. Nighttime was another issue. I have these vivid dreams. They often start with the flashing images and then I get fixated on some topic that plays over and over and over all night long. You have to remember that because of all the fluids being pumped into me, I have to get up and go to the bathroom quite often as well. Usually, when someone wakes from a bad dream, they can go back to sleep and it stops or at least changes. Not for me. As soon as I am back asleep, it starts all over again and is extremely vivid.

During this last admission, it got really bad. It started on Tuesday night with a repetitive dream about how to say “thank you” in different languages. Now the only languages I actually speak are English, Spanish and Pig Latin. My mind was so focused on this that I was really stressing about how to say “thanks” in all kinds of languages. I’d wake up, go to the bathroom, go back to bed and again, over and over and over again, I’d be rehearsing “thank you” in all kinds of languages. I don’t even know if any of them were real, but on it went, all night, until I finally got up at 6:00 a.m. and read the news on the internet.

The next night (Wednesday) was worse. I kept seeing these images of blankness. Yes, a square blob of brown that kept being stamped like a rubber stamp over my field of vision. It too went on all night.

Thursday was the killer. I kept losing track of where I was. I’d get up, look around the room, tell myself that I was in the cancer hospital, go to the bathroom and then try to go back to sleep only to lose track of where I was again. Over and over, I’d wake with a start, look around, feel comfortable with my IV pole and fluids, the window outside and the bathroom and then lie down to go back to sleep only to startle awake again not knowing were I was. When the nursing staff came in at 4:00 a.m. for their customary check of vital signs, I mentioned to the nurse that I was having some difficulty sleeping despite the 50mg of Benadryl I had taken hours before. When she came back to check on me at 6:00 a.m., I was a wreck.

By 6:00 a.m. I had so totally lost my sense of reality, I wasn’t sure where I was. The nurse just happened to come and check on me (out of the goodness of her heart I am sure). I was so overwhelmed that I had to ask her repeatedly if I was still in the hospital and if I was who I thought I was. I was in tears, staring at the ceiling. The closest I think I have ever come to a total all out panic attack.

The nurse stayed with me for about 20 minutes or at least until my brain started to process information correctly. It was very a disconcerting experience. Later in the morning when my wife arrived and I shared this experience with her, she looked at me very lovingly and said, “Yes, I know.” She has suffered from anxiety, panic and depression for years. This time, I experienced her world. I didn’t do very well.

Typically, all of this stuff settles down within a few days of leaving the hospital. The Ifosfamide is given for about three hours on Monday, Tuesday, Wednesday and Thursday of the admission. I go home on Friday and today is now Thursday again. Last night was the first that I didn’t take Benadryl to get some sleep. The brain fog is mostly gone, but still lingers. I did wake last night for a bathroom trip at about 3:30 a.m. and didn’t fall back asleep until 5:00 a.m. this morning. Although very unusual for me, it was better than the dreams.

In eleven days, I have my next appointment with my oncologist. I’ll have blood work and a chest CT that morning and we will discuss the results. If this current treatment has stopped the growth or better yet reduced the number of metastatic lesions in my lungs, we will probably continue with another admission that day. If the lesions have continued to grow, we will have to come up with another plan.

One last issue I’d like to mention as a point of interest. On a previous blog posting, I included a picture of my fat feet due to fluid retention. This last admission was equally challenging on the fluid retention topic. My feet, hands and face all puffed up. The physician that day checked my numbers and told me that I was 10 liters of fluid behind on output versus what I had taken in. That was about 22 pounds of extra fluid in my system. No wonder I had fat feet. They reduced some of the fluids running in and it was all gone by Sunday. I felt much better.

God bless you all. Thank you for your prayers. The battle goes on.

Jim

Hair Loss

2008-08-23T12:06:00.011-06:00

For most people, men at least, hair loss is a given. There are those that get to keep most of their hair and that is fine too. However, losing all of your hair, growing it all back to a point where you can actually comb it and then having to lose it all again, well, that just isn't FAIR!

LOOK - this is what I had when I woke up this morning. It all started Monday.

This is what I had after I talked Patti into cutting it all off.

Better than this morning, but not what I really wanted. Some say bald is beautiful. Me? Well, I'd just as soon have what hair I have as long as I can. And no, I don't do that comb over thing!

The only positive part of all of this is that my beard falls out too and last time, I went about 6-8 weeks without having to shave. Now that isn't a bad deal and maybe even worth the loss of hair.

Monday, I start the next round of chemo at the Huntsman Cancer Hospital. This is the second since restarting chemo, but it is the 4th overall. I had two infusions in March of this year, then radiation, then surgery and now chemo again. I wish it all moved faster.

God bless everyone! Thanks for all your prayers and kind thoughts. We do appreciate them.

Jim

A BIG Day

2008-08-18T22:31:00.008-06:00

Today, a few hairs started falling out again. It has taken me since April to get about 1/2 inch of hair on top of my head. After showering this morning, I was disappointed to see many more hairs than usual in the bottom of the shower. I gave a gentle tug on some hair and sure enough, it came out quite easily.

Someone told me that they always liked Kojak. I never did!

Thursday last week, my WBC count (white blood cells) dropped to 1,000. Normal is between 4,000 and 10,000. WBCs are needed to protect against infection. Since then, I have been on oral antibiotics as a precaution. Todays blood count showed improvement, but still below the 4,000 I need. My platelets were low too - they help your blood clot when you are cut, so they told me not to cut myself shaving or to hit my head on anything. Patti wonders what my blood counts would be like if I hadn't had that shot of Neulasta.

I return to the hospital for the next round of chemo next Monday the 25th. I so look forward to that experience.

The BIG day today is this. Patti and I celebrated our 30th wedding anniversary today. We were married on August 18, 1978 at 8:00 a.m. in the Salt Lake Temple. A lot of water has passed under the bridge in these past 30 years. They have been wonderful. We have five beautiful children, have added a daughter-in-law and a son-in-law and two extra beautiful grandchildren, many, many friends and wonderful neighbors. I work with some of the best people in the world. We can't ask for much more than that.

Many of you have commented on how much you enjoyed the nostalgic pictures from my missionary days, so I dug up some old pictures of Patti and I taken on this day 30 years ago. Wow, a lot of water has passed somewhere. I have changed a lot! Oh, and did I mention that I love the dickens out of her? I do!! I really do!!!

At the wedding reception.

At the wedding breakfast.

August 12, 2008

2008-08-12T12:59:00.009-06:00

I was right, chemotherapy sucks big time.

The first couple of days aren't too bad. I go in to the cancer hospital and basically relax. The nursing staff has to collect all the orders and then order the treatments from the pharmacy. Once those orders are transmitted, they start "pre-treating" me with steroids and fluids that protect my kidneys and bladder.

The unfortunate side effect of that is that once the chemo drugs arrive and they start those, my systems starts to back up with fluid a little. My ankles start to puff out and I start making lots of trips to the bathroom. About every 90 minutes or so, I pass about 400-500 cc of urine. That makes for a long night, every night.

Of course, the nursing staff has to check my vitals every 4 hours around the clock. During the day that's OK. At night, it seems to fall just after I've dosed off from a bathroom trip.

The entire infusion of chemo takes 4 days and then they make me wait another day while they continue steroids and protective fluids. It's on about the 3rd day that the side effects start to manifest themselves. One of the drugs causes some real issues with my brain function. I know that there are those of you that will say "so what's new?" I laugh with you. This is different. There is no real way to describe it. There is a certain separation from reality. Not detachment, because everything is still there, but it is a fog that settles over everything. My vision is affected in that everything takes on a shadowy appearance and is sometimes back-lit at the same time. This makes reading and using the computer a real challenge on the 3rd through 5th days. Once I come home, it continues for another few days. Today is the first that I feel like my brain is getting back to normal from these effects.

We were allowed to leave around 6:00 p.m. on Friday night. I arrived home and crawled into bed. Saturday, it took every ounce of energy to get up, shave and shower and then crawl into my recliner. I basically stayed there the entire time, except for continued trips to the bathroom. My ankles started to go down by Monday morning. Sunday wasn't much better. I stayed in bed until 2:00 p.m. and then moved to my recliner. No shave, no shower.

Nights are another challenge. The chemo effects on my brain mess with my ability to sleep. In the hospital, I have them give me Benadryl which seems to work pretty good. Once I get home, I usually continue for another couple of nights and struggle some and for a while it seems to be accumulative. Finally, last night was good. I slept through the night without Benadryl. Oh joy!

Also on Saturday, I needed to give myself some additional drug therapy. The hospital sent home two drugs that I needed to give myself. One for nausea that I gave through my central line directly into my blood stream, called Aloxi. The other, I have to inject just under the skin, kind of like a diabetic does with insulin. This one is called Neulasta and is some engineered drug that supports my immune system for the next few days to prevent infections since my immune system has been abused by the chemo. The interesting part is that last time I went through chemo and did this same the thing, the first one was billed at about $1,600 and the second at about $6,500. That is one whopping shot to give yourself and watch go into the skin as you contemplate the cost of it. I am thrilled to have it and to avoid the potential side effects without it.

Now to outlive the effects of the treatment and look forward to starting it all again on the 25th of August. Sometime in the next few days, my digestive system will get back to normal and I'll start enjoying food again. In the mean time, everything tastes like it is coated with plastic or like I have a rusty nail in my mouth.

I express to each and everyone the deepest love and appreciation for your kindness and well wishes. Some of you have sent e-mails in response to this blog, but when you don't include your e-mail address, I get the message, but no way to respond which I try to do always. So, please include your e-mail address so that I can keep in touch. Thanks to everyone. ONWARD!

Jim, Patti and Family

Chemo Sucks!

2008-08-05T11:37:00.010-06:00

Hi to all once again. Your continual prayers, cards, e-mails, phone calls and visits are very much appreciated by us. We appreciate the prayers and support from everyone. You all certainly make this experience more tolerable!

I returned to the Huntsman Cancer Hospital yesterday. I had an appointment with my oncologist, Dr. Chen. We talked about the treatment plan that I posted previously. She plans on doing this five day infusion of doxyrubicin and ifosamide (the chemo drugs) every three weeks for four cycles. She will get another CT scan of my chest sometime after the second round of chemo to see if this treatment is having any effect on the cancer lesions in my chest.

I asked her about prognosis. She didn't really address that, but she did explain that there is no cure for stage 4 metastatic sarcoma. Management is what we are doing now with hope for a good outcome. She said that if we get good results with these four treatments, we may consider thoracotomy (lung surgery) to remove the larger lesions if they remain and the many, many small ones shrink or disappear.

So, here I am again in the hospital with my "Christmas Tree" of drugs. My sweetheart Patti has been as my side through all of this. She is quite distressed over this latest explanation of my condition. She was hoping for a cure and return to normal life. Anyway, she took this picture for me so you could all see what I am dragging around with me for the rest of this week. Going to the bathroom and showering are the biggest challenges with this thing in tow. I'm getting it figured out though, this is my third time doing this.

One of the nurses here yesterday had a button on her white lab coat that says "Chemo Sucks," so I thought that was an appropriate title for today's posting.

Just as an aside, Patti informed me that our trip to the cnacer center yesterday was our 61st. For us, that is an 85 mile round trip, every time. I know people that commute that far and further, every day. I don't know how they can afford it. Our gas bills have been horrendous.

I was able to get some images of the CT of my chest. The last one done, on the 21st of July. These are the ones that I posted the report of on my last blog. You can see the increased size of the big lesions and some of you may be able to see the many new small lesions throughout my lungs. Remember when looking at these that black is good - that is air in the lungs. Stringy looking white stuff is good too, that is lung tissue. The bad stuff is white and round.

These images are in no specific order. They do show some lesions with measurements on them. The measurements are in millimeters. The one that says 18.4 has another measurement that I cut off in the picture. The 18.4 is top to bottom, the side to side measurement is 21.3. This lesion started out a 5 mm. I think you can see it on the previous pictures that I posted before when it was much smaller. I think that ones that are attached to the outside walls are more concerning. If they grow big enough, they can penetrate the outer wall and then that would mean even more spreading of the cancer. So far that doesn't appear to be the case. I am thankful for that. I think that if you click on these images, that they will enlarge in size so you can see them better. Sometimes that works and sometimes it doesn't.

There is no telling where this will end or what the outcome will be. I believe in miracles and my faith assures me that all is in the hands of my creator. My savior is my redeemer. I have nothing to fear. I put my trust in them for the best outcome. I am ready and willing to pass through whatever is required. My fear is for my sweetheart. This all seems to be so much harder for her. I am thankful that it is me and not her that has this problem. She strengthens me and I try to strengthen her as best I can. She needs your prayers too and I appreciate that you include her and our family in your prayers.

God bless you all! The battle continues.

Jim

Physical Therapy

2008-07-31T17:05:00.008-06:00

Once again, I have to express extreme thanks to everyone for the phone calls, e-mails, cards, gifts and visits. Your thoughtfulness and kindness mean so much to us during this prolonged struggle.

I started physical therapy (PT) this week, about two and a half weeks after the surgery. Mostly, the goal is to keep good range of motion going in the shoulder and to help with some of the nerve damage from the surgery. I actually came out of the surgery better than the surgeon anticipated. During my 1 week surgical follow-up visit, he was checking the strength of some muscles. He seemed genuinely surprised that I had any use of some muscles commenting that he was sure that he had removed the nerve that went to that muscle. But it still worked. Good for me. Anyway, I was doing pretty good until the PT started. Now, I am pretty darn sore.

Sessions start with a massage first. The therapist, Dr. Howard Knudsen, uses some tools that he says were developed by an orthopedic surgeon. He uses these tools on the skin with cocoa-butter, rubbing back and forth. He says that this increases circulation to the skin and muscles underneath. He is focusing on the areas that are sore mostly. It makes some interesting looking skin for a few days after.

Most of my soreness isn't associated with the surgical site, but rather in my upper right arm. I have complete numbness above the incision through the arm pit and the underside of my upper arm. I mean it is really dead. Can't feel a thing. But, from the area of the upper arm moving toward my elbow, the felling comes back and there is one area about the size of a silver dollar that is really sore. It feels like a really bad sunburn when it is touched. There are a couple of other areas that are sore too and he works them all over.

He does tome range of motion stuff with my shoulder and then finally has me use a weighted swivel devise that works my rotator cuff. Needless to day. I can feel all of it.

Monday, I will head back up to the cancer hospital for infusion of more chemotherapy drugs. This is a five day admission, just like my previous two times. The drugs run into the central line in my chest (it is the white thing dangling from my chest on the second to the last picture - it's been in me since February) 24 hours a day for the five days they keep me there. Then I return at three week intervals to do it all over again. My hair has just started getting long enough to comb again. Three weeks from now, I probably won't have any again. Oh my vanity!

God bless you all. Thank you so much for your prayers. We need them and so appreciate them.

Jim and Family

Metastatic Cancer

2008-07-22T13:47:00.002-06:00

Hi everyone! Just an update from yesterday's posting. I obtained a copy of the CT scan report. Essentially, it shows that while I was being treated with radiation (focused on the primary tumor), the cancer in my lungs has continued to grow. As I stated yesterday, I'll be going into the cancer hospital for aggressive chemotherapy starting on August 4th, 5 days at a time every three weeks. This is what I have feared most. I don't like feeling sick and I didn't like how I felt last time when they did this chemotherapy. At least, I know what to expect this time. So much for my hair growing back.

Here is the technical part of the CT scan report dealing with my lungs, for anyone interested:

Again demonstrated are innumerable soft tissue densities: Nodules
scattered randomly throughout both lungs. These are increased in size
and number when compared to the prior examination. There is an 18 mm x
21 mm right upper lobe subpleural nodule noted on image 15 which
measure 13 mm by 14 mm on the prior study. At 18 mm in diameter left
upper lobe of subpleural pulmonary nodule on image 15 measured 5 mm
previously. There is a lingular pulmonary nodule measuring 12 mm in
diameter on axial image 26 which measures 6 mm previously. There is a
right middle lobe pulmonary nodule on axial image 36 which measures 10
mm in diameter on today's study, which was not well seen on the prior
study. A 10 mm in diameter left lower lobe nodule on axial image 55
measured 4 mm previously. Innumerable other smaller nodules
demonstrate interval increase in size or interval development compared
to prior study. This no evidence of pneumothorax. There is no
effusion.

Again, I can only repay your kindness and prayers with thanks. I do thank everyone for their love.

Jim

2008-07-21T19:39:00.002-06:00

Hi everybody. We are most thankful to everyone for their continued prayers and well wishes. Thank you so much.

My daughter, her husband and their two children brought me a wonderful bear while I was in the hospital recovering from the surgery. It is absolutely amazing. Watch the video above to see what I am talking about.

I had my appointments at the hospital today (surgeon and oncologist). A CT scan was done of my chest, but official results weren't available at the time of the doctor's appointment. However, they did say that from their viewing of it that there didn't appear to be any new lesions and that the previous lesions hadn't grown very much. That sounds great to me.

The surgery appears to have been very successful. The pathology report indicates that all surgical margins were clear of cancer all be it by 1mm in places. The surgeon explained that to get the preferred 3cm margins in this surgery, my entire right arm and the right side of my chest wall would have to have been removed. That would have been a very drastic procedure and difficult to survive. He feels that the fact that I still have a functional arm and the surgical margins are clear is a wonderful achievement given the circumstances.

We now are facing more chemotherapy to go after the cancer in my lungs. It will be the same as before. Hospital admission for 5 days of continuous infusion every three weeks for a total of four sessions. After the second session, they will do another chest CT to see what the lesions are doing.

We are looking forward to getting all of this over with. Your continued prayers, kind thoughts and support in so many ways is sincerely appreciated.

Jim & Patti.

Post Op Recovery #2

2008-07-15T12:29:00.015-06:00

Once again I cannot effectively express my most sincere thanks and appreciation to everyone for their kind thoughts, calls, notes and comments. We so appreciate the friendship, associations and most of all prayers.

I was able to come home on Saturday evening. We arrived here at about 5:00 p.m. I climbed into my recliner and was very pleased to be somewhere comfortable. There aren't very many (actually none) comfortable chairs at the hospital. My back was bothering me something awful by the time we left there.

Sunday was uneventful at home. Resting and watching some good old movies on the TV with my sweetheart and seeing a few visitors that came by the house. Yesterday, was much harder. I was very tired. So tired in fact that I decided to go to a local hospital and have my blood checked. You see, my HCT (hematocrit) had dropped on Friday to 29 and the surgical team had wanted to give me a blood transfusion. I asked them to wait and when they checked my blood later in the afternoon, it had increased to 30.4. However, Saturday morning, it was down again to 29.1 and they offered a transfusion again. I declined and asked them to recheck the level again later. It was up to 29.9 so they let me go home. My fear yesterday was that it was way down and that I had sabotaged myself by not having the transfusion then. Fortunately, the level had improved to 34, so it wasn't that that was making me feel so punk.

For the most part, my arm was giving me fits. From my shoulder to my wrist, it felt as if my arm had been beaten with a baseball bat. Heat, position, narcotics, nothing seemed to help. It was just plain uncomfortable all day long.

Since the surgery, I have had a drain in my wound. Today, I was able to have it removed along with all the bandaging that had been in place since the hospital. Imagine, large, bulky mass of of gauze covered by adhesive tape. Once all of this was removed, my arm has felt much, much better. I think all of the gauze was pushing on a nerve or something. I am glad it is gone. I am still covered in steri-strips from stem to stern and all my skin sticks to it's self from the soaps and stuff they used during surgery. But I do feel better.

OK - HERE IS THE GROSS PART. IF YOU DON'T WANT TO SEE GROSS PICTURES, STOP NOW. PROCEED AT YOUR OWN RISK.

This is at the beginning of surgery. I am unconscious (thankfully) and the OR team is preparing my skin with antiseptic. You can see the mass of the tumor kind of hanging there in the armpit area.

This at the point in the surgery when they removed the tumor (in surgeon's hands). You can see the big hole it came from and the position my arm was in for over 3 hours. No wonder it hurts!

Here is a shot of my armpit with all the bandage material and the drain hanging out of it.

The bandage actually came off pretty well. The tape really hurt. You can see the steri-strips over the incision. The keep the skin together without a lot of stitches that would have to be taken out otherwise. In order for them to stick, the skin is covered with glue. You can also see the central IV line that I still have in my chest. It has been there since February 29th, four and a half months.

Here, the bandage is off. The drain is at the back and my skin is sticking. Yuck.

Cutting the stitch that holds the drain in place then yank, out it came and it didn't really hurt. Dr. Harline (my family practice supervising physician) was kind enough to do this for me. He said about 8 inches of drain was inside me. Sorry, I didn't get a picture of that.

And finally, here is a shot of the entire incision, about 23 cm when we measured it in clinic today. Again, you can see my skin sticking together. There is no armpit hair. I haven't had any there since the chemo. Radiation treatments must have had something to do with that too. I wonder if I will ever get any hair back there.

So, that is about it. Patti and I are scheduled to meet with the surgeon and the oncologist next Monday. I have a chest CT scheduled prior to those appointments. I am hoping for good findings and praying for a miracle for the lungs. The chemo treatments I already had were supposed to be the best there is for sarcoma and that is when it spread from my primary tumor to my lungs and spine. So, it will be interesting to see what they have planned next.

God bless you all. Thank you for your prayers.

Jim & Patti

Post Op Recovery

2008-07-11T07:18:00.003-06:00

Good morning everyone. It is Friday, two days since my surgery. I am still in the hospital, slowly improving and feeling a little better each day.

Yesterday, I was quite tired after a very restless night. Frequent checking by the nurses kept Patti and I up a lot of that night. Pain management wasn't very good initially. I had an IV pump with narcotics in it. All I had to do was push a button and it would give me some medication. The problem was that the medication made me feel groggy and weird and wasn't very effective at pain control. Fortunately, I was able to switch to Lortab, an oral pain medication and my pain control has been much better since.

I spiked a little fever for a couple of hours last evening, but that seems to have resolved now. The wound is still draining into the collection bulb, but much less today than it was yesterday. All in all, I can't complain. I'm feeling pretty good, just sore if I bump or move suddenly.

I've had some visitors and phone calls which I appreciate. Thank you.

I probably won't post anything again until I am home in the next few days. I haven't heard yet when that will be. Just waiting for now.

God bless you all!

Jim

The Day After

2008-07-10T10:40:00.007-06:00

This is Clint again. My dad, Jim, isn't feeling so well today so he and my mom asked that I give everyone a brief update. The tumor pictured below was actually bunched up into a ball about the size of a large orange or a grapefruit. The picture was taken after it had been cut up a bit and laid out on the table.

Jim is in quite a bit of pain today, and is suffering from nausea, but is doing well otherwise. Patti spent the night at the hospital with him and said that they both got as much rest as can be expected at a hospital (with nurses coming and checking on Jim every couple of hours, etc.)

We all love you Dad, and we're very happy to hear that you made it out of the surgery yesterday with no complications. We wish you a speed recovery from the surgery, and a quick resolution to the remaining cancer in your body.

Surgery, Play by Play

2008-07-09T11:21:00.013-06:00

This will be a running update of today's events as they progress. Each time something changes or we hear from the surgery team, I'll post it here so that all of you can stay up to date. I just want to take this opportunity to say thank you to everyone for your constant and continued support. I know my parents have felt an overwhelming sense of love and compassion from friends, family, co-workers, etc. So many people have expressed their concern for my dad's welfare and are praying for him. My dad mentioned last night that so many people from so many different faiths have been praying for him that the only way he won't recover is if that is God's will. It is difficult to tell all of you how much all of this has meant to us as a family, but I do want to express appreciation on behalf of all of Jim's family - thank you very much.

Clint

This is a picture of the tumor after it was removed. The ruler above it is 1 foot in length!

7:00 p.m. - Dr. Randall just came out and spoke with us. Patti is very relieved - she has been pacing in anticipation for the last 45 minutes to an hour. Overall, the surgery went well. Dr. Randall is very pleased with the outcome, especially considering the size of the tumor and how it was wrapped around so many nerves. He said there were only two nerves damaged in the removal, both of which tie into back muscles. The only difficulty Jim should have as a result is doing pull-ups – which I doubt he has even attempted in the last twenty years. :-) The OR just called and said we could go wait for him in his room. So, the next post should be from Jim himself. Thanks again for all of the support – we're all very excited to have this behind us.
5:20 p.m. - A nurse just came out and let us know that the tumor has been removed and that they are now closing, which will take about an hour. After that is done, the surgeon (Dr. Randall) will come and let us know more of the details.
3:23 p.m. - We just received the first call from the OR. The surgery has started and everything is going well so far.
2:00 p.m. - They just kicked all of us out of the pre-admit room and took Jim to the OR. We have been told that the procedure could take anywhere from 2 to 5 hours. The OR nurse will call with updates every so often. Jim has been in a great mood the whole time – completely relaxed, joking around with his providers and generally just being himself. Patti is nervous but is holding up extremely well.
12:55 p.m. - A nurse is in the room trying to start an IV on his left arm, but struggling.
11:35 a.m. - We are in pre-admit room three, on the third floor of the Huntsman Cancer Hospital. Jim has changed into a gown and stockings and is waiting for an IV.

2008-07-09T08:08:00.002-06:00

Good morning to everyone. Today is the big day. We are headed to the hospital for surgery. Fortunately, we don't have to be there until 11:00 a.m. so we got to sleep in. Wonderful!!

Thanks to everyone for the e-mails, phone calls, cards, notes, food baskets and goodies. I am overwhelmed by the outpouring of love and support. I even woke this morning to a banner in my front yard with balloons and blessings. I don't know what to say except thanks and I so appreciate the prayers.

We met Monday (two days ago) with the surgeon and again discussed surgery. He explained that his intention is to leave my arm, but he will have to remove a lot of tissue around the tumor and this will involve some nerves. At the least, this will leave me with some weakness in my shoulder area. Depending on how involved the other nerves (brachial for medical people) are will determine what function I have left in my arm or hand. I have had quite a bit of numbness in my radial and medial nerves over the past month or so. I don't know if that is because of the radiation treatments or damage from the tumor. Fortunately, it seems to be mostly transient - lasting only a few minutes when it is at it's worst.

We were told to expect a 3-4 hour surgery today. I doubt that I will be able to post anything new here myself, but I have asked my son Clint to post a couple of updates throughout the day as things progress, so check back often for details as they are posted.

God bless you all. Thank you!

Jim

Pictures . . .

2008-06-29T09:34:00.010-06:00

I am not sure what happened to the pictures I included on that last post. Somehow they overlapped. I did discover that if you click on the picture, you can see the entire thing. Sorry about that. I guess I didn't put enough space between them. I've now got some missionary pictures as well. Enjoy!

This is Richard and I with our mission president, Vaughn J. Featherstone in 1977. Wow!

And look at this, a full head of hair. This is me in 1976 as a missionary. Wow.

Have a wonderful day everyone! I will.

Jim

Ten days to go

2008-06-29T08:49:00.008-06:00

Good morning to everyone. Once again, I feel such wonderful appreciation to everyone for their kind thoughts and prayers. Ten days from now, on July 9th, I will return to the Huntsman Cancer Hospital for surgery.

As I mentioned in my last posting on this blog, the plan is to remove the tumor that started this whole mess. Everything will be done to get as much of the tumor as possible without destroying nerves and blood supply. Any remaining or suspected residual tumor will be treated with lasers - kind of like burning a wart I guess. The only other option was to remove my entire right arm. The surgeon didn't feel that such a drastic measure was necessary and that it would be much harder to recover from as well as put my life at much greater risk. With the radiation treatments and planned surgery, he feels confident in a good outcome. Of course, it all depends on what he finds when he gets in there.

Surgery will be followed by more chemotherapy in an attempt to treat the cancer that has spread to my lungs. When that will start or how often, etc. is yet to be determined. A time for surgery hasn't been set, only the date. The hospital will call us sometime on the 8th and tell us when to report to the hospital on the 9th. Until then, we won't know any more than we do now.

In my last posting, I mentioned that Patti and I were headed to San Antonio, Texas for a week. We had a wonderful time. Our friends, the Elkins were so wonderful to us. They generously provided the plane tickets, a place to stay, transportation, wonderful food and excellent company. It was great to relax and be away from all the concerns here at home. We were able to do some sight seeing and since this was Patti's first time to Texas, we had a great time seeing things like the Alamo, the San Antonio River Walk, Tower of the Americas, museums and Patti's favorite, the King Ranch.

Here are some pictures:

The picture above is of San Antonio, Texas from the Tower of the America's.

The tower was built in 1964 as part of the World's Fair.

Also, here is a picture of Richard and Casey Elkins, our dear fiends. Can you believe that Richard and I were missionary companions 31 years ago? Yeah, I know it is hard to imagine us in white shirts and ties on bikes roaming around Texas. We actually served together in Harlingen, Texas, way South of San Antonio, but we were in the Texas San Antonio Mission. Our mission president was Vaughn J. Featherstone. Imagine!!

What I need to do now is find a picture of us when we were companions. Now that will be interesting and I think I know right where to find one. I'll post it later today, so check back!

All our love, Jim & Patti.

Oh yeah, can you see? My hair has started to grow back. Yippee!

Surgery Scheduled

2008-06-09T17:20:00.006-06:00

Greetings to everyone. Once again, I am so thankful and appreciative for your kind thoughts, prayers and encouragement. Not a day goes by that I don't feel the kindness of everyone around me. I thank you.

Today, Patti and I met with Dr. Randall, the head of the Sarcoma Team here at the Huntsman Cancer Hospital. Prior to our visit, I had another MRI of the primary tumor area and then a CT scan of the chest. The lesion in my back appears to be stable - that is, no change from the previous scans.

Unfortunately, the lungs do not appear to have done as well. A total of 13 new metastatic lesions were identified and the lesions that were present previously have all increased in size.

As was explained to us today, this means that although the radiation has most likely killed or at least significantly damaged the cancer in the axilla and spine, the cancer continues to reek havoc in the lungs.

Surgery to remove the primary tumor has been scheduled for the 9th of July and is expected to be significant and complicated. We discussed loss of the arm versus getting everything possible and then treating any questionable areas with argon lasers and such. For now, that is the plan. There may be additional radiation treatments as well if needed. For sure, after recovering from surgery, there will be more chemotherapy.

I have included some images from the CT scan showing some of the new lesions in the lungs. Also, the last picture here shows a lesion that is now 13 millimeters in size. On the previous scan in April, it measured only 5 millimeters in size.

So, we are ready for a break. A dear friend and former missionary companion of mine and his wife have invited Patti and I to come and spend a week with them in San Antonio, Texas. We are thrilled for a little down time and look forward to a change of pace for a week. Since they are so sweet and generous and have provided the plane tickets, a place to sleep and a car for transportation, how can we refuse? We leave next Monday, the 16th. Our kids in the mean time get to care for the pets and watch the house. We hope we have a house to return to in a week.

May God bless you all. Thank you for remembering us in your prayers. Thanks for putting our names on the temple prayer rolls. Thanks for being kind and loving friends and family.

Graduation Day

2008-06-05T12:13:00.005-06:00

Finally, I am finished with my radiation treatments. Five weeks of traveling to the Huntsman Cancer Hospital, every week day. I find no noticeable change in the tumor except that it is tenter to the touch. My skin is redish looking, like a sunburn on the front and back and that is mildly irritating. My spinal lesion was irradiated as well and I have noticed that on some days, it is quite uncomfortable, but it does respond well to ibuprofen.

When I completed treatment today, they presented me with a "graduation certificate" and a wonderful quilt made and donated by volunteers at the hospital. It was a little humbling! What a wonderful gesture and to have everyone on the staff there wish me well. Amazing. Pictures are below.

On Monday, the 9th, I am scheduled for CT and MRI studies. After those are completed, we meet with Dr. Randall the surgeon to discuss surgery. That is the next step in this slow process.

Overall, I am feeling pretty good. No major complaints. Anxious to get on with it.

Once again, thanks to you all for your kind thoughts and prayers. They are so much appreciated.

Jim

Radiation Therapy update

2008-05-21T14:01:00.003-06:00

I completed treatment number 15 today. That leaves 5 more on my back and 10 more on the primary tumor. Up until the last couple of days, I haven't had much in the way of side effects from the treatments, but now I am starting to feel more tired and worn out. I have also noticed increase tenderness in the primary tumor and today, I started feeling some achiness in my back as well. Ibuprofen seems to help. The 90+ mile round trip to the Huntsman Cancer Hospital every day gets old too.

Patti and I met with Dr. Hitchcock, my radiation oncologist and reviewed the treatment schedule and she asked how I was feeling. She also noted that I am developing radiation rash on my back somewhat. I hadn't noticed, but in two distinct areas, I have what looks like sunburn from the radiation. Fortunately for me, I can't feel it, yet. She warned me during my first consultation that these areas can actually break down and become quite bothersome. She told me today to start using moisturizing cream and to keep an eye on them. I will, I will.

Two weeks ago, we celebrated Mother's day and had all of our children and grandchildren over for a dinner. It was wonderful to have family together and visit. Here is a picture of Patti and I on that day.

Thanks as always to everyone for your kind thoughts and wishes. We so appreciate the support we are receiving from neighbors, family and friends, far and near.

God bless you all.

Jim & Patti

Radiation Therapy

2008-05-10T08:59:00.006-06:00

It is Saturday morning and I thought I would give a brief update on the radiation treatment. I have now had a total of 7 treatments to both the primary tumor in my arm pit and also to the lesion in my back. I met with Dr. Hitchcock (my radiation oncologist) on Wednesday to review the treatments and such.

She informed me that the primary tumor will receive 25 total treatments and that the lesion in my vertebrae (T8) will receive 20. Other than that, the treatment will continue. I have had no significant side effects or problems with the treatments. However, I do notice some tenderness in the area of the primary tumor and last night, I did notice some burning of the skin in the area of my arm pit. These symptoms were all explained prior to starting treatment as things to expect. So far, I can live with it. They did tell me that the side effects would become more pronounced after the second week. Oh, I still struggle with fatigue and lack of stamina. I can't believe how pooped out I get when doing little things around the house or yard.

I have to brag about some wonderful neighbors. I have been working on building a small block retaining wall on both sides of my driveway for about two years. Last year, I started on the North side of the driveway and would be able to work for a couple of hours digging and stacking these heavy blocks and then I'd have to rest because of my lower back pain. Well, a month or so ago, the boy scouts in our ward asked if they could help with the wall as a service project. Who am I to turn down free labor? They came one night with their leaders and worked for a couple of hours and got that side finished. Unfortunately due to other activities, they haven't been able to return to work on the other side.

This past Tuesday, I got a call from a good friend and neighbor asking if he, his wife and another neighbor could come by and work on the walls. The three of them showed up and spent a number of hours and got the entire south side of the driveway done. I can't believe it! It took me all summer last year to go several feet. These two groups of wonderful people did the entire thing in a matter of hours. I am so impress and my back is so thankful!

So here are some pictures:

On the left is the South wall and on the right is the North wall. Sorry that you can't see the North wall very well, the sun was shining and obliterated half of the wall as it goes out front of the house. Anyway, you get the idea.

I am completely blown away by the kindness of so many people. Neighbors and friends have brought meals and called and visited. A couple of Saturdays ago, 24 neighbors showed up (a day or two after my first chemo treatment when I was really sick) and cleaned up my yard. They pruned trees and shrubs and raked up leaves and mowed the lawn. It was wonderful.

Professional friends and associates have contributed financially and that has been an enormous help too. We travel about 90+ miles round trip daily for the radiation treatments, doctors visits, tests and other treatments and with gas prices as they are, that has been an enormous expense as well. The medical bills have been coming in and even after insurance, they are significant. Just this past week, we have received over $700.00 in bills for co-pay amounts. Not working at either my primary employment at the University of Utah or my secondary employment at Timpanogos Family Medicine or the ER job at Timpanogos Regional Hospital has cut into our monthly income by about $1,200.00 to $1,500.00 so that has been a significant monthly drop. Thanks to these generous people, we are meeting all of our obligations so far.

Thank you to everyone for support of every kind. The e-mails and cards are wonderful. The visits and meals are equally appreciated. The labor and help around the house are very much appreciated by my back. Thanks everyone! We so appreciate it all. May God bless you, each and every one.

Jim, Patti and family.

It has started - glowing in the dark (not really)

2008-05-01T12:08:00.021-06:00

Another day, another adventure.

I started radiation therapy for my cancer today. However, I do need to apologize to everyone for the several typos I keep leaving in these posts. No matter how many times I read through them before I click on the "Publish Post" button, I can't seem to see any mistakes. Then, the next time I go to post something and read the previous post to make sure I am covering everything, I find typos. Sorry folks. I'm doing the best I can!

My first radiation treatment went without a hitch. Everything seemed to work well and the staff at the Huntsman Cancer Institute are wonderful.

I tried to get a good picture of the sign over the front desk at the Radiation Oncology department, but it was really difficult to get into a good position with all the reflections. Sorry.

My appointments will be at 9:30 a.m. every weekday for the next 5 weeks. One of the unexpected pleasures of this is running into someone from forgotten years of high school.

The two ladies to the left here are some of the receptionists at Radiation Oncology, Susan (on the left) and Edith on the right. The first time I checked in to this department last week, Susan recognized my name and me. Turns out we went to high school together 34 years ago. Wow! This IS a small world.

This is the team that worked on me today. I didn't catch the names of the young ladies, but I met Glenn (on the right) yesterday when I came in for the dry run and finalization of calculations. They are all very nice.

Here is the mold they created last week during my first visit. See the last post for details about the unusual experience of being molded.

This mold holds me in the exact same position every time I come in for treatment. It's pretty comfortable and fits really well.

Once I am on the table and in the mold, the table is moved into position under the "linear accelerator" for positioning with laser sights using the tattoos they placed last week. These guys seem to have fun. They tend to pull out their magic markers and draw on me every time I see them. The tattoos are circled and dotted every time for sighting in.

You can see some of the marks here. There is a faint laser line running up and down, right in the mid-line of my body. Not sure if you can see it in this picture.

You can see how big the tumor still is at the top of the picture. Also, notice how little chest hair I have. I used to be pretty hairy. Not now.

The white tube going into my chest is my central IV line for IV fluids when they start chemo again. They decided to leave it in for future use.

If you look really close, you can see laser lines in this picture, lining me up for treatment. You can also see the site of the biopsy done back on February 20th. Again, you can see the central ("Hickman") line for the chemo-therapy. This requires daily flushing with heparin to keep it from clotting off.

And finally, here I am, all alone, in the dark, being targeted like a deer in a rifle scope, irradiated and actually pretty comfortable during the entire thing, so far.

I am told that the effects of radiation therapy are cumulative. This means that for the first couple of weeks, I won't feel much effect. After that, the area starts to become a little tender and the skin can become tender like with a sunburn. As the treatments continue, those effects may increase. Every individual is different. Every body reacts to the treatment in it's own way.

Oh yes, the primary tumor is irradiated from the front and then the big round thing rotates around to the back and hits it a second time from that direction. Then, everything is repositioned and the spine lesion is hit from behind as well (just in case you wanted to know).

Once again, I thank everyone for their extreme kindness and encouragement. I do appreciate the prayers and expect to recover fully.

Jim

2008-04-29T10:30:00.008-06:00

Hi everyone! I again have to thank you all for so many wonderful messages of encouragement and support. The many, many personal prayers and Temple prayers are so very appreciated! I cannot thank you enough.

I was able to pay a visit to my place of work yesterday, the Urology Clinic at the University of Utah. It is so wonderful to be treated like family by my co-workers. The hugs and expressions of genuine concern and care are cherished. Everyone there refueled my energy cells.

While there, I took the liberty to look at my PET scans, MRI and CT scans and then got the bright idea to use my digital camera to take a couple of pictures that I could share with you so that you have an idea of what is going on. First, on the left here is a general image from the second PET scan that I had. A PET scan is a combination of nuclear medicine and CT imaging. You'll see a a large football looking thing in the area if my right arm pit (the picture is as I am lying on my back and you are looking down on me). This is the tumor. I has grown some as I reported last time. It is bright in color because the cancer cells are very active and the radioactive stuff they inject is drawn to areas of high cellular activity. Other areas that light up are the heart and kidneys. You can also see that I have a pretty significant scoliosis. That goes well with my several herniated disks that I have nursed for years.

This next image at the left is another view of the PET scan at a different level in my body which still shows some of the primary tumor in my arm pit but this view also shows the lesion in my spine that is now the latest development of the cancer progression. It kind of looks like a miniature tree there in the middle of my spine.

I am sorry that these are not better images, but I did simply point my camera at the screen and shoot the picture with my fingers crossed. Not bad I'd say.

Even though there are lesions in my lungs, they are very small and scattered mostly in the left lung field. Only one was viewed in the right lung. I couldn't get a good image of them with my camera.

This is the last PET scan image I'll show you today. This is just one more image, but is a little closer and at a level where you can see the tumor very well. It is close to my ribs, the scapula and in other views, the upper arm bone. The lugs are the big black areas because they are full of air. In the middle of the lungs, you can see part of the heart.

This stuff is pretty fascinating. The pink/orange color is how the computer imaging displays the radioactive stuff flowing through my body. Again, the active cells show more color. The yellow/white area in the tumor is the most active area in my body.

Now, here is an MRI image. This is totally different than CT or PET scans and I am really lousy at reading them, but I do have a good idea what I am looking at in these images.

First, this one on the left is an image through my body from the left side, looking towards my right side. So, the left of the picture is the front of my chest, the right side of the picture is toward my back. It's kind of like someone cut me from top to bottom and laid me open to look at.

In the center of the picture is a globular mass. That is the tumor. This picture is right through the middle of the tumor. It looks pretty complicated to me.

This is the last image I took to share with you. Again, this is an MRI image. This time from the front. All the way to the right is a big dark area, this is my right lung. It's black because it is mostly air. Moving left from that, you can see some rectangular structures kind of stacked on top of each other. These are my ribs. next to that is the tumor again. And then to the left of that would be my right upper arm.

I am no radiologist so I can't offer any definitive opinion about the nature of the tumor. I can only go by what I read in their reports and what my docs tell me. As I reported on my last post, the tumor had enlarged some and the lesion in my spine had increased in size as well.

I'll be starting radiation therapy this Thursday and I look forward to getting some significant results from that therapy. I'll keep you posted on the details of that experience.

Thank you all again for all you do. Your messages, prayers and everything else are sincerely appreciated. I have no way to repay anyone except to say thank you from the bottom of my heart.

Jim

Radiation Oncology Visit

2008-04-24T09:48:00.001-06:00

What wonderful family and friends I have. Thanks to all for your wonderful posts here and your personal e-mails. I so appreciate the prayers, encouragement, love and hope.

As was posted last week, the news wasn’t great. Discovering that the cancer has spread to my lungs and to my spine was a little disheartening for us. This complicates the treatment and prolongs my recovery. I would so like to go back to work.

We met with the radiation oncologist yesterday, a very wonderful lady by the name of Dr. Hitchcock and her resident, Dr. Chen (yes, another Dr. Chen). After their exam and questions and discussion, I was scheduled back in the afternoon for another CT scan of my chest. This one was for mapping of the tumors they are going to treat, the primary tumor under my right arm and the lesion discovered in my spine.

The process was fascinating. I undressed from the waist up and was asked to lie down on this pillow looking device. The pillow was very warm and began to expand up around my head and arms. They determined that they want me to lie on my back with my arms above my head for treatment. This puts the primary tumor in the best position for the radiation treatment. This pillow thing filled in all the space around my head, shoulders and arms and then began to harden to make a mold of me. I discovered (by asking lots of questions) that this pillow device is filled with a substance very similar to the expanding foam in a can that I have used many times to fill cracks and gaps and such. You know, the stuff you buy at Home Depot. Anyway, it was a pretty cool experience.

Once this mold had hardened sufficiently, I was run in and out of the CT scanner a couple of times as measurements were taken, then a gentleman called a “Dosimetrist” came into the room with the technicians as measurements were taken. The Dosimetrist is responsible for calculating the dose of radiation.

There were laser sights on the walls and ceiling that projected target lines on me. The technicians used magic markers to draw plotting targets in various places for both tumors. Once all of their calculations were finalized, they tattooed me (yes, permanent tattoos) in the center of each of the targets. These tattoos will now serve as the guides, as does the mold, so that I am in the exact same position for all of my radiation treatments. They keep the mold for my use every time. They tell me that they have a big room where they store them for all the patients. Pretty cool.

So now, they have to do more calculations and such. I am scheduled to return next Wednesday for a dry run simulation to see if all the calculations and measurements are correct. If so, my treatments start the next day (May 1st) and go for 25 days, Monday through Friday.

If all goes well and no further treatments are needed, there will be a couple of weeks of calm down time and then surgery on the primary tumor. The radiation messes with the skin’s ability to heal well, so the surgeon wants to wait 2-3 weeks after radiation before operating to that there will be less issue with wound healing. I appreciate that!

Finally, once all of that is completed, the plan is to return to the oncologist to discuss additional chemotherapy for the lung lesions. I asked about radiation therapy for the lungs. The response I got to that question was that irradiating lungs isn’t a good thing. I guess that makes sense. I do like to breathe.

Oh yes, thanks to those of you with excellent advise about the insurance company issue. I contacted them Tuesday morning and after being transferred from customer service to a policy “specialist,” I discovered that the hospital had submitted a “corrected” bill for the date of service. So, the insurance company “took back” what they had already paid on the claim for that service and they were reprocessing the claim. Of course, the statement they sent me didn’t say that. It simply stated that the $5,218.06 was not covered and was my responsibility. I suggested that they consider including a little more detail in their memo in the future.

God bless you all!

Jim

No More Chemotherapy, For Now...

2008-04-21T15:51:00.003-06:00

Hi folks! Here's the latest update. There is some good news; no more chemotherapy, for now. I had a CT of the chest and an MRI of the tumor last Thursday afternoon. Patti and I met with the oncologist and the surgeon that is the head of the sarcoma team here at the Huntsman Cancer Institute.

The bad news is this. After two rounds of chemotherapy, the tumor is larger. About a centimeter larger in length and width. Additionally, I had a PET scan the day before I started my first chemotherapy treatment. That study showed some lesions in my lungs that were described as being "to small to classify." These were not present on the original CT of my chest done on 2/13/08 and so we were watching them. It appears that some of these lesions have increased in size and one even disappeared. Also, early on, a 7mm lytic lesion was observed in the body of my T9 vertebrae. This has now increased to 9mm.

The word we got today is that my sarcoma has most likely spread to the lungs and the spine and as I already said, the chemo did nothing to help. I am scheduled to meet with the radiation oncologist on Wednesday morning. The plan is to treat the tumor (and presumably the spinal lesion) with radiation therapy for about a month. This will cause some irritation and edema. The surgeon will have to let this all calm down for a couple of weeks and then plans on doing surgery to remove the tumor after that. No specific time periods other than that have been offered. It is still a lot of wait and see how it responds type of approach.

One of the residents explained it quite well today. He said that sarcoma in adults is rare enough that treatment plans are somewhat behind as far as understanding how to approach it compared to many of the other more common cancers. That makes sense to me.

Finally, after the surgery, there is likely to be more chemotherapy. I have a tube coming out of my chest called a "Hickman line" that was passed directly into a major blood vessel, a more direct route for chemotherapy. I get to keep it and care for it for another couple of months. I am so thrilled.

Additionally, we are now starting to have issues with the insurance coverage. We received notice that a bill of over $5,000.00 for the original surgical open biopsy (for diagnostic/identification purposes) hasn't been covered by the insurance and that they are telling us that it is our responsibility. Oh joy. I love insurance companies. So, now I get to deal with them. I was hoping for smooth sailing. So far, they have been great. Hopefully, it is some clerical error.

Please know how much I appreciate all the kind thoughts, prayers and well wishes. It means so much to me. Thank you to all. Please keep us in your prayers.

Jim & Patti and family.

Onward

2008-04-07T14:46:00.007-06:00

Hello everyone! I am so pleased and thankful for the response to this blog. Your comments and encouragement are so appreciated. I am especially thankful for all the notes from my friends in the BYU 53rd Ward. What a blessing. Thank you! I served at the Bishop (ecclesiastical leader) of the BYU 53rd Ward for a little over 3 years and had such wonderful experiences there. Thank you, thank you, thank you!

I was discharged from the Huntsman Cancer Hospital just about a week ago, last Tuesday to be exact. I haven't had much problem with nausea and vomiting, although my digestive system is far from normal. About two weeks after my first chemotherapy, my hair (not that there was much to start with) began to fall out in handfuls. After a few days, it stopped and left me with kind of a stringy mop. One of my wonderful co-workers at the University of Utah department of Urology, took pity on me and made me a hat with dreadlocks to cover up my new found thin hair. I love it!I expect the rest of this hair will fall out at about the same time, two weeks after chemo. This will most likely, leave me quite bald. Oh, one up side to all of this is that I don't have to shave. My beard is gone! Wow. I've been shaving since the 7th grade. This is great!!

The most challenging aspects so far have been the profound fatigue and lack of stamina. I have found it a slight frustration to be so tired as to only be able to get showered and dressed and then to have to sleep all day to recover. That is improving slowly.

Here are some more pictures. Thanks for all of your encouragement and kind thoughts. Your prayers are so very much appreciated.

To the right here is a picture of my oncologist, Dr. Lei Chen (far right) and the group of interns, residents, pharmacists, etc. that visited me a couple of times while in the hospital. I feel very well cared for while there.

The picture below is of my nurse Ann (on the right) and a student nurse that cared for me the first couple of days back in the Huntsman this trip. I so appreciate their good care!

The plan now is to go back to the Huntsman on April 21st for my next round of chemo. In the mean time, I am scheduled for a CT of the chest and then an MRI of the right arm pit on the 17th of April. I have an appointment with Dr. Chen on the 21st prior to admission to discuss results of these tests and what is in the plan to follow that. The Sarcoma Team will be meeting on Monday morning to discuss everything before I have that appointment. I am looking forward to getting on with whatever they have planned.

God bless you all. I appreciate your kind thoughts, encouragement and prayers. I'll wright more when more happens.

Jim

More Chemo

2008-03-30T06:28:00.012-06:00

Well folks, here I am again. I am at the Huntsman Cancer Hospital here in Salt Lake City. I arrived Friday afternoon and thy started infusion of the chemo drugs that evening, so I am close to the end of the second 24 hour infusion. Monday evening, I'll be done with the chemo, but I have to stay an extra 24 hours so that they can infuse protective stuff for the rest of my body. Fun!

So far this time, I haven't had to many side effects. In fact, I'm feeling fairly good. I regained a lot of my strength and appetite by Friday and that hasn't changed much since they started this second round of drugs. I am thankful for that.

Here is a link to some information about this hospital in case anyone is interested: http://www.huntsmancancer.org/phaseTwo.jsp#

Just cut an paste that into your browser if it isn't active as a link in the text.

Here are some pictures of the hospital, my room, the infusion pumps and all the bags of fluid going at once.

This is my hospital room. It is rather nice with a lot of wood and custom cabinets, etc. Nice big windows looking out to the hills to the east where I can watch birds, squirrels, hikers and bikers.
This is a mug shot of the interns and residents that came to "visit" me yesterday. Dr. Grantz in the middle is kind of the lead dude. He is very nice and pleasant to visit with. I can't recall the names of the other two, but they are nice too.
Here is the cluster of pumps for the infusion of chemo. There is a central computer attched to the four pumps, two on either side. A far cry from the old gravity fed dial a flows that I learned to use 20 something years ago.This is the collection of fluids I am receiving. The brown covered bag is the doxyrubicin. It is a pink fluid that runs for 24 hours continuously. The smaller bag that is on the right and hanging over another bag is the ifosamide (spelling?) that runs for 3 hours every afternoon. The two of these drugs were described by the oncologist at the "red devil" treatment. She said it is about a mean as it gets with this stuff.

I lost most of my hair, but not all of it. One day it all started to come out in big clumps and handfuls. After about 5 days, that just all stopped leaving me with thin stringy hair. I'll keep what I can for as long as I can, but I suspect that at the end of the second week from this infusion, I'll lose the rest.

All of your kind thoughts and prayers are so appreciated. Thank you for posting such nice and heart flelt thoughts. Please continue to do so. I appreciate you filling my bucket from time to time with your kindness.

May God bless you always.

Jim

2008-03-23T07:24:00.004-06:00

Someone asked me about my family. I am thrilled to report that my oldest daughter, Mariah, arranged for some professional family pictures to be taken the week before I started chemotherapy. Now how insightful is that?

So, here are the introductions. My sweetheart Patti and I are in the center. And for the curious, we will celebrate our 30th wedding anniversary this summer on August 18th. Wow.

To the left of Patti are sons Coleton and Clayton. To my right is our daughter Mariah holding her son Roman. He will be one on April 29th. To her left is her husband, Enrique. He is holding their 3 and a half year old daughter Boston. In the back, from left to right are daughter Makell, son Clinton and his wife Jen.

We are proud of our family.

Jim

2008-03-22T17:49:00.006-06:00

Hi everyone. I am so sorry that not much has been added to this since my son Clint first set it up. I took too long to get logged in and stuff and by the time I did, I wasn't feeling very well. Finally, I am starting to feel a little stronger, but I am still struggling with some issues.

So here's the story. Some time in about mid January, I noticed a big lump in my right armpit as I was putting on my deodorant one morning. Now, this wasn't just a little lump and the way I noticed it was my deodorant stick hit it and I couldn't run it up and down my pit like I do every morning. See the picture at the left.

At that moment, I thought to my self, "Wow, I must have really pulled a muscle or something." You see, my right arm had been aching for a couple of weeks and I kind of dismissed the whole thing. I stopped carrying heavy things and really tried to let it "settle down."

After a week or so, I realized that something was not quite right, so I decided to have someone look at it, but it took another couple of weeks to decide who. Finally, I went to see a good friend of mine that I work with at Timpanogos Regional Hospital. He is one of the ER docs there. I asked him to look at it and tell me what he thought. He was very polite and didn't get excited, but he suggested getting an MRI of it. So I did.

Sometime near the third week of February, I had the MRI done. During the MRI, the radiologist came in and told me that he thought that some other studies needed to be done. Specifically, the MRI needed some extra help with special dye and that he also thought I needed a CT of my chest and abdomen. Arrangements were made, and all of these studies were done that same day. The radiologist told me that it appeared to him that I have a lesion suspicious of cancer, probably sarcoma.

Because I work at the University of Utah, I waited until the next day and spoke with the doc that I work with asking him for his recommendation as to who I should see about this. He recommended a Dr. Lor Randall, head of the sarcoma team at the Huntsman Cancer Institute here in Salt Lake City. Arrangements were made and I saw Dr. Randall and his team on February 26th. They recommended biopsy. The biopsy was done the following Friday at the Huntsman Cancer Hospital. Results came back stating something like a high grade spindle cell carcinoma of the neural sheath. Basically, that means the cancer is aggressive and probably originated from one of the nerve branches under my arm. This picture was taken the day of the biopsy. You can see some black marks above and below the bandage. Those are "plotting" marks the surgeon made to plan for the future removal of the tumor.

But first, the doc explained that the tumor needed to be treated with chemotherapy first. The plan would be to have chemotherapy to try to shrink the tumor and maybe even some radiation therapy too, before surgical removal of the tumor.

So, I had my first bout of chemotherapy two weeks ago. The first day wasn't so bad, but by the end of the second day, I was as tired as I have ever been. On the picture, you can see, yes six bags of fluid running in, all at the same time. The brown bag on the right, kind of in the back is one of the chemo drugs. It ran for three days continuously. One of the small bags on the left (the one that is higher) was the second chemo drug. It ran for three hours every day for three days. The other fluids you can see are nutritional and for bladder/kidney protection since the brown bag drug is toxic to them. Anyway, after five days, I was sent home and have been dealing with the side effects since. Only a couple of days of nausea and vomiting. They gave me really good drugs for that. Mostly profound weakness and fatigue and now sores in my mouth. It really makes it difficult to eat anything. First the nausea and vomiting and now the sores in my mouth. No fun.

I had another study done this past week that showed the tumor hasn't gotten an larger and that there is larger area of dead tissue in the center of the tumor than was seen before. That is a good thing.

So now, I am scheduled for another round of chemo next Friday. I don't know how many of those I'll have to deal with, but I am not looking forward to it. Oh yeah, my hair started falling out two days ago. I'm not bald yet, but I don't think it will take long.

Thanks to everyone for your thoughts and prayers. They do keep me going. We so much appreciate that enormous response to our plight. We are doing as well as can be expected. I'll try to do better at updating this page. God bless you all.

A friend told me that her grandmother used to say that the scriptures say that "This shall come to pass, not to stay." Excellent. That's how I look at it too.

Until next time.

Jim

Introduction

2008-03-03T23:55:00.006-07:00

Hello Friends and Family,

This site is dedicated to you, the friends and family of Jim Meeks, who wish to keep up-to-date on his progress with his fight against cancer. As you probably already know, he was recently diagnosed with a sarcoma by a doctor at the Huntsman Cancer Institute, located on the campus of the University of Utah. Despite receiving such unexpected and untimely news, he and his immediate family have an upbeat and positive attitude.

We wish to thank all of you for everything which has been done so far, but there is still much to be accomplished. As such, we ask for your continued support in the form of thoughts and prayers. We will be updating this site on a (semi) regular basis so that everyone who loves Jim can keep apprised of the situation. Very soon you will also find relevant links regarding his specific type of sarcoma and the treatments he is undergoing. We hope to share some of our experiences and anecdotes throughout the process as well, including things on the lighter side. After all, for anyone who knows Jim well, you know he wouldn't want this to be a place of doom and gloom! We love you Dad!

Sincerely,
Clint Meeks (Jim's son)
and the rest of his immediate family