Tuesday, September 27, 2011

The glamorous job of Care Giver

Jeff went for a check up this morning and he wasn't doing well. He had lost 18 lbs since Friday. That is 8 lbs less than when he started. He was dehydrated and ended up getting some IV fluid and anti nausea meds. But we were able to do that at the dr's office and not have to go to the hospital. Which brings me to the subject of being a care giver. It's a tough job that I do not take lightly. I had been very aggravated with Jeff about him drinking enough. If I nag him too much to keep drinking and trying to eat he gets irritated with me and wants me to back off. But when I back off he doesn't drink enough and GETS DEHYDRATED. I can't win. Just because he has cancer doesn't mean we don't get on each others nerves. That is still the same.

The role of care giver is not entirely foreign to me, after all I am a mother. And I have taken care of Jeff all of our relationship. He likes me to do things for him. I blame his mother because she never taught him how to cook, clean, do laundry or make a bed. Thanks, Joy! You can't teach this old dog anything new! But I will also say that Jeff has taken care of me. He has worked so hard so that I could stay home and raise our kids. Somehow it's all even.

The difference is the fierceness of love and protection I feel for him. Jeff has always been the protector - not me. So that is a little new. I don't have any doubt or reservations when it comes to making sure he is getting the best treatment and care. My brother in law, Sean calls it "Dumbo's Mother Syndrome". You know in the Disney movie Dumbo, the mother elephant is very calm and sweet, so sweet, until they mess with her baby and then she goes ballistic! I wouldn't hesitate to go ballistic for Jeff Smith. I love that man whether he drinks enough fluid or not, whether he has cancer or not, whether he drives me crazy or not, til death do us part, I love him. And even if I complain I would never let anyone else do my job of taking care of him.

Exhausted,
Leta

Saturday, September 24, 2011

Home

We are home and happy! I cannot describe how much we love our bed! I may not get up all day. Oh that's a fantasy! On the flip side, Jeff will NOT want to be in bed all day. They are planting wheat right outside our door and Jeff is going crazy wanting to be out there. Usually I would just let him go for his "mental health" but as we were leaving the hospital yesterday his latest lab results came in. He is dangerously close to being neutropenic right now. His white blood cells are dwindling down to nothing and that means he will have no immune system. The simplest infection would put him back in the hospital. So he really can't be out in the dirt and muck of the farm. He will have to be on a special diet also to keep him safe. No fresh fruits or vegetables due to the risk of bacterial contamination. And I have to get all my live plants out. Crazy! His next blood test will be Tuesday. After that he will probably be pretty isolated for a while.

I just looked up and he's out the door to "check on a tractor". That man! Why doesn't he want to lie in bed and read magazines and watch back to back episodes of Sell This House? If he's not back inside in about 3 minutes I'm going out there in my jammies to embarrass him in front of his employees. Wish me luck.

Comforted,
Jeff and Leta

Friday, September 23, 2011

100%

It's the last day of chemo and it's looks like Jeff will take 100% this time. We are so excited by this news. The last drop should be finished around 4:00 this afternoon. His blood counts are normal and other than a rash and headache he has tolerated this round well. In fact he's doing so well he will go home tonight or tomorrow morning. Yippee!

Dr Patel does anticipate his blood levels to drop dramatically this time which is normal after 3 rounds of this kind of chemo. Jeff will have to have blood work twice a week and we will need to be on high alert for infections. Please pray our family can stay healthy during the upcoming weeks. Luke already has a cold and I'm trying to figure out how to keep them separated.

I had a delightful birthday yesterday, even in the hospital. Thank you friends and family for making me feel so special! Katie and Sally came up last night and brought supper, wine and the movie, Bridesmaids. We went down to an isolated waiting room and watched the movie and laughed until we got the "snorts and coughs". I love my sisters so much!

Smiling today,
Jeff and Leta

Thursday, September 22, 2011

A funny story to brighten our day

Jeff is still doing great but can't shake his horrible headache. They've upped his pain meds and ive tried to keep him in a good mood. Thought I'd share one of our funny stories that we giggle over all the time.

Setting the scene: the night before Jeff's big surgery at MD Anserson back in Feb 2010. We had appointments all day and they were all running late. One of out last appointments of the day was with the surgeon and we got there 3 hours late because of all the late appointments all day. We were tired, worried, full of questions and anxiety. Plus we had barely eaten because of Jeff's tests. The odds were against us already that we would be able to keep our cool and be nice.

The nurse took us to a room. We sat down and the first thing I noticed was the horrible smell. I mean it was bad. I thought it was something gross I couldn't see in the trash can. I asked Jeff if he smelled it and he didn't, just me. I went on and on about the stink and the nurse heard me out in the hall and came in and sprayed air freshener. Jeff was furious at me for " making a scene". But I couldn't help it and it was bugging me that Jeff couldn't smell it. I continued to complain and at that point Jeff was about ready to throw me out of the room. Inappropriate language was used!

Finally I stood up and said I was going out into the hall for some fresh air. When i walked by Jeff he looked at me strangely and said he smelled it too - on me! What? I quickly pulled the back of my long sweater around and sniffed it. IT WAS ME!I burst into tears right as the nurse and surgeon walked in. They asked what was wrong and I told them someone had soiled themselves in the chair and left it for me to sit in for 15 minutes! And then Jeff started laughing and said, "And now she smells like ass!" So Jeff laughed and I cried. Relief for both of us.

The rest of the dr's visit went really well considering I smelled like ass. They brought me scrubs to change into but they were ugly and would have looked hidious with the cute cowboy boots I was wearing. ( I get it that I can be snobby that way and that is not a strong character trait) So I walked back to the hotel while Jeff took his last CT scan and I took a hot bath and drank a lot of wine. Then I walked back up to the hospital and got Jeff.

The sweater in question was saved and I still wear it. Who knew that ass would be so easy to get out with just regular laundry detergent?

One extra detail to the story? A couple of months later when we went back to the surgeons office he had all new VINYL chairs. The nurse said they redid all the rooms after my
unfortunate accident. So because of me, no one will ever have to accidentally
sit in ass in the Head and Neck department at MDA. You're welcome!

Leta

Wednesday, September 21, 2011

Scan news

We finally got the report on Jeff's CT scans. Dr Patel said Jeff has had a partial response to the chemo. That means some of the spots are gone and some of the spots are unchanged. Nothing new grew and none of the spots got bigger. So we will finish this round of chemo and rescan in two weeks. That will determine if we continue chemo or look toward starting a trial. So I guess we will wait and see. You know waiting is not our game. We decided to only talk about the positive aspects of the news until after the next scans. We'll see if we can keep the dark side away.

This round of chemo doesn't seem to be as bad. Jeff has only gained 6 lbs of fluid so far. He has a rash but it's not too angry yet. He is struggling with a constant headache but has been very coherent and lucid. That's nice for me. No hiccups this time either. Funny how it's different every time. One new thing during this hospital stay. They have started construction on the floor beneath us. So napping during the day has become frustrating. Just when you doze off a Jack hammer jolts you awake. Dirty rotten whore! No sleep at night or during the day. It reminds me of having a newborn. Remember those days?

Please continue to pray for Jeff. We are still hoping and praying that this chemo will work or at least give him some significant time and quality of life. Yes, we've added that last phrase to our prayers. Let's just be honest here. Gulp.

One super quote from Jeff today, " You know the 3 greatest things I've accomplished in my life? Luke, Gracie and Jake." Amen!

Tuesday, September 20, 2011

Tired and silly

We didn't sleep very much last night. Vital sign checks, meds and his IV beeping kept us up almost every hour. I thought we would be tired and fussy this morning but we feel great! We opened a window and enjoyed the fall morning. We laid in bed and laughed and talked about every good thing we could think of. Ahhhhh. What a relief to been in a good mood. After a shower and brushing our teeth, the world should be just about perfect. Maybe we'll even get a nap!

Peaceful,
Jeff and Leta

Monday, September 19, 2011

Round 3

We are all checked in and back in the big room - 689. Jeff got here this morning and he got the best nurse. That was a great way to start. I stayed home all day and cleaned house and did laundry. I'm here with Jeff now and we are about to go to bed. His brother, Ron was here with him and I brought him a chicken fried steak from Salt Grass. So far, so good.

I'm surprised at how tired we are. We went longer between chemo rounds this time but it wasn't enough time to recoup. We are weary and Jeff is starting to seem frailer although his weight was pretty good. I think mentally it is so hard to prepare for this - knowing what is to come. We should have the final scan results by late Tuesday or Wednesday. That issue is still weighing heavy on my heart. I am going to hold a grudge for a little bit longer. Jeff has let it go and is at peace with his decision to continue treatment.

Jeff's niece, Rachel has also been battling cancer. She also received treatment at MDA. During our first trip down there they were there. Rachel and David are a lot younger than we are and we thought we would comfort them. But they were the ones who took care of and comforted us. They are strong and faithful and brave. Rachel has fought a very tough battle and just received the news that her cancer is back. It was a crushing blow to hear that news. Please pray for David and Rachel. They are young and sweet and totally undeserving of this horrible disease. Who is keeping the score? Why isn't it understood that we should only be given so much grief and heartache? There should be a limit. God, are you listening?

Bracing for the storm,
Jeff and Leta

Friday, September 16, 2011

So mad

Today has been a day.  The only way to describe it is, I'm just so mad!  We have been patient long enough and I'm finished with that.  We never heard back from Dr. Patel yesterday so we called this morning.  They still have not received our scans from MD Anderson.  Jeff personally faxed a request and they were supposed to be over nighted on Wednesday.  Guess what?  They weren't.  They were mailed out on Thursday regular delivery.  Due to be here on Tuesday.  So we called MD Anderson to see if they had recieved the scans Dr. Patel sent them.  Well you can't just call MDA.  A nurse did get back to me and said she didn't have the answer to any of my questions.  By then I was in tears.  We just want the July scans to be compared to the September scans to see how well the chemo is working.  Is that too much to ask?  Doesn't that seem logical?  Dr Patel, if it was your wife would you demand the scans?  After much back and forth the two doctors did communicate but neither one has both sets of scans.  They decided a 3rd round of chemo is the best option.  Jeff and I don't really know how we feel about that.  Jeff is going to do it but it's a big step without having all the information.  The chemo is so brutal. Dr Patel, would you take it if you didn't have exact answers about how well it was working? I want percentages and exact measurements.  I learned how to do that math in jr high.  Let's apply that to real life, now. Can you feel my fury?  I've fantasized all day about challenging Dr Patel, Dr Hwu and the people in medical records at MDA to a fair game of dodge ball.  I would LOVE to take someone's head off with a big, red, rubber ball!  My nephew Jack could be on my team and we could take them out!

Reality....... kind of sucks.  I am feeling frustrated and vulnerable when I should be hopeful and faithful.  I want a normal life.  A life where things are a little more fair and I don't cry so much.  A life where my kids don't ask me why my face is sad and we all go a whole day without worrying about anything.   Okay enough pity for me.  We will start chemo on Monday.  We are blessed to have my parents staying with our kids.  They get bacon every morning for breakfast.  Can you imagine? It's beautiful fall weather. We got about an inch of rain. Jeff is planting wheat and I know that makes him happy.  He's been at work since this morning.  I know that will give him a mental boost to put in a full day of work. Football tonight, fair tomorrow and basketball tournament on Sunday.  Busyness will keep us moving!

Still so mad,
Leta

Wednesday, September 14, 2011

Questions and answers

We did not get clear cut answers today as we had hoped. We got news but it's all open ended. Dr Patel has been out of town since last Thursday. He said he would call us first thing this morning. He did not. His nurse said it would be the afternoon. Cruel and unusual is what I call it! We've been waiting since Firday!!! Jeff finally called back at 2 and the nurse said hey were still waiting on the scans from MDA. What??? They were requested weeks ago. Someone didn't do their job and I hope I never find out who it was! Here's what we know.

Dr Patel thinks Jeff has had a response to the chemo although not as dramatic as he had hoped. Nothing new grew and nothing else got bigger. Jeff now only has one lesion on his liver and two on his lung. Before chemo there were a couple. He still has the tumor in the back of his throat and the two involved lymph nodes. But without the scans he can't say how much they have shrunk. He feels confident enough to let Jeff start round 3 of chemo on Monday.

We are unsettled and shaky. We want more answers and feel let down by our doctor. When it comes to your life I don't think it's too much to ask for. We are not accustomed to being treated this way. I'm trying to decide if I still like dr Patel.

When we have more information we will let you know. My Aunt Kay, whom I admire so much, said she didn't have the answers either. But she felt quite certain Jeff and I would be equipped with the tools need to get through this. I agree. And one way I see this is by all the many people that are put on our path to walk with us, love us and support us. Thanks today to Lotte, Mike and Robby. I didn't know they would be on our path today but there they were to help us shear our lambs for the fair in no time at all. Thanks for sending them, God. Perfect!

So we are going to move forward with hope for our future and love in our hearts. It should be a happy weekend before chemo on Monday. Thurday Gracie cheers and Friday Luke has a game and Saturday all three of my kids show lambs at the tri state fair. Obviously I have lost my mind. Jeff has a goal this weekend too.He wants to ride a horse and help sort cattle. I hope he does and feels like a million bucks! I love that man! Even though he drank my diet water when he was trying to gain weight. His peace offering was a full sugar Gatorade. Because that's like a diet water??? He's on my list.

Demanding of answer,
jeff And Leta

Monday, September 12, 2011

Our affirmation of faith

We are trying to stay busy today.  Jeff is at work and I'm on laundry detail.  The weather has been gorgeous and we were outside a lot this weekend.  The kids are showing lambs on Saturday at the Tri State Fair and we've been getting ready for that.  We all went to church together yesterday and got to witness a beautiful baptism and watch Jake get his 3rd grade bible.  It was all good!

We have received so many prayers and so much support.  I tell everyone that we are so thankful for it all and it is truly sustaining us.  Jeff and I talk about it all the time and we've also been in deep discussions about all the prayers.  One thing we have learned is faith is very personal and I think we all do it differently. Because of cancer we have had to fine tune what we think and what we know about our faith.  And of course it turns out that we do things differently than most.

We believe that we are all born onto this earth to love and serve one another.  And we all will die.  It's the part that's in the middle that gets complicated.  So many things can happen during our lives to cause us to question our faith.  Cancer, accidents that claim young lives, suicides.  Those things are personal to my faith.  But everyone has something.  Why do babies and children die?  Why did 9-11 happen?  The list goes on and on. Jeff and I have spent so much time lately pondering the "why". And here's our conclusion.  There is no answer that we can understand now.  Maybe when we're in heaven we will have all the answers.  But we KNOW that this is not a curse.  Jeff did not deserve or undeserve this.  This just is.  I talked before about how our life has never been ordinary.  It's been full of the highest highs and unfortunately some of the lowest lows. But what a blessing, really.  Really!  We have faith and we know that if we could hope this away, wish this away or pray it gone then HE WOULD BE CURED.  It is not a lack of those things.  And it will always be our daily prayer, Please Lord, cure Jeff of this cancer and let him live his life to feel good, work hard and watch his children grow.

But if Jeff dies of this disease it will not be because of anything we did or didn't do or said or didn't say or prayed or didn't pray.  It will just be.  And the outcome is already written.   Although the thought of Jeff dying of cancer is not what we want it will NOT effect our faith.  We will still give God all the glory for the blessings in our life.  We always go back to our first affirmation.  We are all born into this world to love and serve one another.  It's not about us.  And of course we're selfish and think sometimes that it is but that's not the reason we're here.

I hope this doesn't come across that we've given up because we haven't.  I truly believe that if anyone can beat the odds it is Jeff Smith. I want him here with me.  I want him here!   We will do everything we can.  And we will never give up hope.  

We sang it at church yesterday and it means a lot today:
Lord, give us peace, and
Make us calm and sure.
That in thy strength we evermore endure.

Faithful servants,
Jeff and Leta

Thursday, September 8, 2011

The big wait

Jeff's CT scans will be on Friday morning. That is very good news! The frustrating part is Dr Patel will be out of town through Tuesday. Jeff and I went to the car after our appointment and processed that info. We decided we dont want the dr on call to give us our results. So we were very brave and marched back into the dr's office and told him that. These scans and the results are huge! And it's not just reading the scans it's also comparing the new scans to the old ones to see if the cancer spots are shrinking. So the bad news is we will have to wait until Wednesday yo get the results. That is a long time!!!! But I think it's the right choice. We don't want to get any mis-information.

I'm sure the next week will be hard for us. Were ready to stay busy and pep talk each other as much as possible. There will probably be some desperate posting on my part. And I may even lose my cool if slightly provoked.

Thank goodness for cooler weather! I hope I can spend a lot of time outside walking and working in the yard. Plus they finally got my floor in so I need to put my house back together. Yes keeping busy will work!

Crazy as ever,
Jeff and Leta

Tuesday, September 6, 2011

Goodness

The weather is cooler, we got a rain and Jeff is feeling good again. What else could you want? Jeff is eating again and is just about to go to work for a little while. We are waiting to hear from the dr about CT scan appointments. They should be sometime the next week. We assume it is good to wait and let the full effects of the 2 rounds of chemo do their job before checking to see if the treatment is working. I love that Jeff's dr is calm and patient. He balances out our hysteria.

I wanted to tell you about one of the biggest blessings for me. I appreciate SO much the people sending meals to us. It has been the best gift. My friend Christy brought food out last night and I told her it's really not about the food, it's all about the love! Although the food has been great too. Thank you so much for smothering us in all the care and love. It has filled us up!

Hopeful,
Jeff and Leta

Thursday, September 1, 2011

Eat!

We just got back from the dr's visit and it went pretty well. He was mildly concerned with Jeff's weight. He was down to 174. He weighed 206 last week. That's just very hard on your body. And today's loss was probably a reflection of fluid loss. He doesn't want Jeff to lose anymore bady mass. So he put Jeff on a medicine to stimulate his appetite. I had no idea that kind of thing even existed. I will be careful not to let something like that get into the wrong hands! Wouldn't want someone like me to even get a drop of that stuff! I'll be sure and wear gloves when I handle that substance!

Dr Patel said to plan on scans for the next week or two. Were so happy to do the scans here and not have to return to MD Anderson. Dr Patel has been so kind in every way possible to communicate with our dr's down there. I can't imagine what our lives would be if we had to do chemo in Houston. Thankful!!!

Yesterday I had a couple of people comment to me about how brave Jeff and I are. Just wanted to comment on that. We don't feel all that brave. In fact we are pretty scared and full of anxiety most of the time. There are daily tears and constant doubts. We do try our best to fill ourselves with hope and faith. But honestly it is impossible at times. We have tried to give up control over the situation and just let it be. We pray for a cure and we pray for peace. Whenever you love us, pray for us, and lift us up we are soothed. We do have those moments of calmness. We will never look at anything in the same way. We have been changed but hopefully not scarred. We are mad,sad and frightened but hopefully not bitter. My hope for this blog is to show you in all honesty how we are living with Jeff's cancer. We are not even close to perfect but out truth is sincere. Even though we stumble daily, our faith is absolute. It will all be okay.

A little shaky,
Jeff and Leta