I've posted before about the job of caregiver. I take my role very seriously but in the same breathe I must tell you it is the toughest job I have ever done. But here is a break in the story. A glimmer of hope and humor!
Jeff is still continuing to work more than he should - just as he's done his entire life. And amid all the work and stress and cancer he still has nights when he can't sleep. Insomnia has had a hold of him his entire life. Dirty rotten whore! And did I mention that I'm a big sleeper? Gotta have it! At least 8 hours. We've been mismatched from the beginning!
So Tuesday night I was asleep and Jeff was not. He usually just gets up and roams or watches TV. This particular night he decided to do some business and was busy at his desk. That was all normal and good untill....... he woke me up at 2 am to ask where our deposit book was. Repeat. HE TURNED ON THE LIGHT AND WOKE ME UP AND ASKED ME WHERE THE DEPOSIT BOOK WAS AT 2 AM!.
Luckily I was in a deep sleep and was unable to speak and was able to go right back to sleep. However, the next day we did discuss it. He had no idea that I would be upset or bothered by his act of selfishness. Lucky for him I explained it in a way he could TOTALLY understand.
Thursday, May 31, 2012
Monday, May 28, 2012
I spy
Jeff and his boys were moving cattle across the road. It was just a handful of cattle so they were only using the pick up and the four wheeler. Guess who was driving the four wheeler! They called me to block the road so I had a good view of Jeff Smith as he caught air jumping the ditch and fish tailed onto the caliche road. At first I was worried until I looked at his face as he sped down the road. He was wearing a GIANT smile! Woo hoo for still being a boy and loving a little danger on a Monday morning!
Sunday, May 27, 2012
Summer
School is out and that means a new season for the Smith's. It is officially summer to us. Two months ago we didn't know if Jeff would see this day but he is still pushing on and living life everyday. In fact, he is outside right now riding pens with Luke. Yes, he is still on a horse. He amazes me everyday. But being outside, right in the middle of everything is where he wants to be. Everyday we are reassured that we have chosen the best medicine for Jeff: a dose of work and sunshine, being with his family and counting his blessings. It seems to be working. Jeff is somewhat weaker but not tremendously so. He works in the morning and comes in to rest in the afternoon. Usually he drives around later in the day to check things. His pain is being managed and he still has things to smile and laugh about. He got together for a mini high school reunion and was touched to the core by old friends and all the memories and stories that went with them.
As hard as this is, he is thankful everyday. He is continuing to stay calm and feel peace. Although the fight for life is still in him!
We are now agreeing that he will be strong enough to move to our new house in a couple of weeks. We have put off making that decision based on how he was feeling. He has even caught some of our enthusiasm and is looking forward to our new place. Please pray that we can get through that transition smoothly. Please pray that it will quickly feel like "our home". I'm especially praying that our kids will have time to make some memories with their Daddy there.
We continue to feel the love and support from so many people in our lives. We have surrounded ourselves with a mighty force. However, there are a few people that continue to cause Jeff much stress and anxiety. These are people that Jeff cannot let go of. Please pray for Jeff and those relationships. It's his toughest thing right now. He is such a good man and continues to always try to do the right thing by them. I often fear they are taking away all his energy but I feel like my hands are tied. I am helpless in my love and protection for him.
But I know this is something Jeff feels he must do and a weight he must carry. I however, could snap at any moment and tell everyone EXACTLY how I feel. I'm just trying to keep my mouth shut. But really, what are the odds of that?
Our journey is continuing on. We don't know what exactly is next on our path. So glad to know that you are all walking with us!
As hard as this is, he is thankful everyday. He is continuing to stay calm and feel peace. Although the fight for life is still in him!
We are now agreeing that he will be strong enough to move to our new house in a couple of weeks. We have put off making that decision based on how he was feeling. He has even caught some of our enthusiasm and is looking forward to our new place. Please pray that we can get through that transition smoothly. Please pray that it will quickly feel like "our home". I'm especially praying that our kids will have time to make some memories with their Daddy there.
We continue to feel the love and support from so many people in our lives. We have surrounded ourselves with a mighty force. However, there are a few people that continue to cause Jeff much stress and anxiety. These are people that Jeff cannot let go of. Please pray for Jeff and those relationships. It's his toughest thing right now. He is such a good man and continues to always try to do the right thing by them. I often fear they are taking away all his energy but I feel like my hands are tied. I am helpless in my love and protection for him.
But I know this is something Jeff feels he must do and a weight he must carry. I however, could snap at any moment and tell everyone EXACTLY how I feel. I'm just trying to keep my mouth shut. But really, what are the odds of that?
Our journey is continuing on. We don't know what exactly is next on our path. So glad to know that you are all walking with us!
Tuesday, May 15, 2012
The Beginning
The Christmas of 2009 was a great one! We got a big blizzard on Christmas Eve. I remember because it was such an ordeal. Jeff was running a ton of cattle and a blizzard meant great moisture but also a lot of work. It started early that morning when a neighbor called. He couldn't get to work and asked if he could borrow Jeff's 4W Drive pick up to get to work. It was new and I thought at the time it was an awful lot to ask. But Jeff said yes. That is Jeff!
Jeff wanted boxing gloves that year for him and Luke. Luke and I had been doing kickboxing/karate for a couple of years and Jeff couldn't wait to spar with his son. So of course that is what Santa brought. A couple of days after Christmas the gloves were put to use. In my mind sparring is all about "tagging" someone but immediately Jeff and Luke were going at it - smiling and laughing. Luke was only 15 at the time but already passing his Daddy in size. While they went at it I stood by and reminded them to take it easy and they were only sparring. About that time Jeff popped Luke in the mouth - full of braces. The shock quickly equaled a swift right hook to Jeff's nose. Sparring Over!!! The gloves were put away and Jeff walked away with a bloody nose and Luke a busted lip. So much for trying to restrain all the testosterone!
A couple of days later Jeff complained of the "blood clot" still in his nose. I looked and sure enough you could see something way up in his nose. When it was still there a week later we called our local clinic for an appointment. We both assumed it was a polyp but we never worried a second about it. After all, we had been having a super cold winter and Jeff was outside all the time. It made sense to us that the cold air had somehow affected his nose.
The first week in January we went to the Canyon Clinic and saw the dr. He had no idea what was in Jeff's nose but agreed it might be a polyp. He referred us to an ENT - Ear, Nose and Throat dr. A couple of weeks later we saw Dr. Guttenplan who had taken out Luke's tonsils when he was 6. He also agreed that it was probably a polyp and did a basic CT scan in his office to make sure it wasn't something bigger. While I was waiting for Jeff to take the test it was my first sense of alarm. What did he mean bigger? Quickly the dr came out and said the scan was clear - only the polyp. He asked if we wanted to try steroids to shrink it or procede with surgery to remove it. Jeff even asked if he could just take it out in the office! Febuary 2nd - during another snow storm Jeff had the polyp removed. The surgery went well and the dr came out and told me it wasn't a polyp because it was a funny color. He said he thought it was a hemangioma. He said he would call with the pathology report in a couple of days. I never thought anything about it. We were never worried. We completely forgot about it.
A couple of days later the dr called and I answered the phone. He asked to speak to Jeff and I knew something was wrong. Jeff was sleeping/resting from the surgery. I gave him the phone and sat beside him on the bed. I watched his face the entire time and tried to figure out the conversation. His breathing increased rapidly and I knew something was very wrong. He hung up and said it was a melanoma tumor. We were both scared to death and completely in shock. But I remember telling him we would fix it. We would find the best dr's and get the best treatment and we would fix it! Dr. Guttenplan referred us that day to MD Anderson, to his friend that he went to medical school with. Within 2 weeks we were in Houston. That's how our journey began.
Jeff wanted boxing gloves that year for him and Luke. Luke and I had been doing kickboxing/karate for a couple of years and Jeff couldn't wait to spar with his son. So of course that is what Santa brought. A couple of days after Christmas the gloves were put to use. In my mind sparring is all about "tagging" someone but immediately Jeff and Luke were going at it - smiling and laughing. Luke was only 15 at the time but already passing his Daddy in size. While they went at it I stood by and reminded them to take it easy and they were only sparring. About that time Jeff popped Luke in the mouth - full of braces. The shock quickly equaled a swift right hook to Jeff's nose. Sparring Over!!! The gloves were put away and Jeff walked away with a bloody nose and Luke a busted lip. So much for trying to restrain all the testosterone!
A couple of days later Jeff complained of the "blood clot" still in his nose. I looked and sure enough you could see something way up in his nose. When it was still there a week later we called our local clinic for an appointment. We both assumed it was a polyp but we never worried a second about it. After all, we had been having a super cold winter and Jeff was outside all the time. It made sense to us that the cold air had somehow affected his nose.
The first week in January we went to the Canyon Clinic and saw the dr. He had no idea what was in Jeff's nose but agreed it might be a polyp. He referred us to an ENT - Ear, Nose and Throat dr. A couple of weeks later we saw Dr. Guttenplan who had taken out Luke's tonsils when he was 6. He also agreed that it was probably a polyp and did a basic CT scan in his office to make sure it wasn't something bigger. While I was waiting for Jeff to take the test it was my first sense of alarm. What did he mean bigger? Quickly the dr came out and said the scan was clear - only the polyp. He asked if we wanted to try steroids to shrink it or procede with surgery to remove it. Jeff even asked if he could just take it out in the office! Febuary 2nd - during another snow storm Jeff had the polyp removed. The surgery went well and the dr came out and told me it wasn't a polyp because it was a funny color. He said he thought it was a hemangioma. He said he would call with the pathology report in a couple of days. I never thought anything about it. We were never worried. We completely forgot about it.
A couple of days later the dr called and I answered the phone. He asked to speak to Jeff and I knew something was wrong. Jeff was sleeping/resting from the surgery. I gave him the phone and sat beside him on the bed. I watched his face the entire time and tried to figure out the conversation. His breathing increased rapidly and I knew something was very wrong. He hung up and said it was a melanoma tumor. We were both scared to death and completely in shock. But I remember telling him we would fix it. We would find the best dr's and get the best treatment and we would fix it! Dr. Guttenplan referred us that day to MD Anderson, to his friend that he went to medical school with. Within 2 weeks we were in Houston. That's how our journey began.
Wednesday, May 9, 2012
Living Each Day
We have been trying to live each day. Very simple. We like to keep it simple. Jeff is doing okay. In fact Dr. Patel said he looked great. And I know he does feel "good" a little bit everyday. Last week we shipped wheat pasture cattle. This is such a big deal! And Jeff was right in the middle of it. And I'm so glad he was able to do that. In fact, he rode his horse and penned pasture cattle 3 days last week. Jeff doesn't think it was that big of a deal but it took a lot out of him physically. I was surprised he decided to ride day 2 and 3 but he couldn't stand the thought of another cowboy out there doing his job. And if that wasn't enough he also rode our feed yard pens twice this week. Once with Luke and once with his brother. He's doing the things he loves! (He does complain about how tired it makes him but I just drink a little wine and he doesn't bother me too much.)
So with all of that physical work he was exhausted. He actually started the hiccup thing again. One of the worst ways to torture a human being. Right up there with water boarding. Grrrr! He had about 3 straight days and nights of hiccups before they were able to stop them. Not a lot of sleeping or eating during that time. A combination of thorazine and a muscle relaxant did the trick. And now that they have stopped he has stopped the extra meds and seems fine. Crazy.
He had another check up with Dr. Patel yesterday. We have officially decided to not seek anymore treatment. We didn't spend a lot of time talking about it. We both just knew. So we told the dr yesterday and he agreed it was a good decision. I've spent the last week on the computer researching mucosal melanoma and treatments, searching frantically for some new cure. But it's the same old info. Mucosal melanoma is so rare that there isn't much research that has been done to find a cure or treatment. It is just lumped together with skin melanoma which isn't even really the same disease. There is no effective treatment at all. Disheartening but at least it confirms that we have done everything we can. There are some treatments for people that have a c-Kit tumor mutation. But Jeff does not have the mutation and therefore would not be elgible to take those meds. We will not be going to Mexico, or taking herbs or going to a healer. Jeff actually tried some of that but nothing has worked.
So on our way home from the dr we both had a little break down. I would be honest in saying that I had a huge meltdown. We both experienced a lot more fury than saddness. Turns out it was very hard to "officially" make that decision and say those words out loud. It kind of caught us off guard. Jeff is afraid he will panic in a couple of weeks and wish he would have done some kind of treatment, because he still has such a strong will to live. We are both a little anxious about people agreeing or disagreeing with us. But the bottom line is that logically, there is nothing more to do. He wants to be at home with his family and running his business and enjoying life. Any treatment out there would take those things away from him and he's not willing to give them up.
Jeff had a blood test yesterday to check his blood counts. His nose is still bleeding and at times it takes a while to stop. Just checking. I hope he doesn't have to have many more pokes or needles. We got his pain meds increased and he is pretty comfortable. He has continued to see friends and has enjoyed spending time with people that he has loved throughout his life. Lots of goodness!
Love,
Jeff and Leta
So with all of that physical work he was exhausted. He actually started the hiccup thing again. One of the worst ways to torture a human being. Right up there with water boarding. Grrrr! He had about 3 straight days and nights of hiccups before they were able to stop them. Not a lot of sleeping or eating during that time. A combination of thorazine and a muscle relaxant did the trick. And now that they have stopped he has stopped the extra meds and seems fine. Crazy.
He had another check up with Dr. Patel yesterday. We have officially decided to not seek anymore treatment. We didn't spend a lot of time talking about it. We both just knew. So we told the dr yesterday and he agreed it was a good decision. I've spent the last week on the computer researching mucosal melanoma and treatments, searching frantically for some new cure. But it's the same old info. Mucosal melanoma is so rare that there isn't much research that has been done to find a cure or treatment. It is just lumped together with skin melanoma which isn't even really the same disease. There is no effective treatment at all. Disheartening but at least it confirms that we have done everything we can. There are some treatments for people that have a c-Kit tumor mutation. But Jeff does not have the mutation and therefore would not be elgible to take those meds. We will not be going to Mexico, or taking herbs or going to a healer. Jeff actually tried some of that but nothing has worked.
So on our way home from the dr we both had a little break down. I would be honest in saying that I had a huge meltdown. We both experienced a lot more fury than saddness. Turns out it was very hard to "officially" make that decision and say those words out loud. It kind of caught us off guard. Jeff is afraid he will panic in a couple of weeks and wish he would have done some kind of treatment, because he still has such a strong will to live. We are both a little anxious about people agreeing or disagreeing with us. But the bottom line is that logically, there is nothing more to do. He wants to be at home with his family and running his business and enjoying life. Any treatment out there would take those things away from him and he's not willing to give them up.
Jeff had a blood test yesterday to check his blood counts. His nose is still bleeding and at times it takes a while to stop. Just checking. I hope he doesn't have to have many more pokes or needles. We got his pain meds increased and he is pretty comfortable. He has continued to see friends and has enjoyed spending time with people that he has loved throughout his life. Lots of goodness!
Love,
Jeff and Leta
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