Holding steady

We got Jeff's platelet count back today and it was only down 6 to 47.  That is very good news!  It didn't drop dramatically like it did the week before.  We are so relieved!!!  But it  did drop below the magic number of 50.  So Jeff will not be able to take the medicine until his count is back up to 75. At least a week off.  Jeff does love a challenge!  I googled "How to increase your platelets" and it first says to get a transfusion.  Jeff is not low enough for that so I moved on to "How to increase your platelets through diet"  and bingo I got a list of things WE CAN DO!  There are a lot of foods they recommend and according to "them" Papaya leaf extract is the way to go along with a list of fruits and veggies and supplements.  So tomorrow I will be heading to the health food store. We love having something to do or try. 

Jeff was a little dismayed at my last post.  He said he feels like I am giving up and he hated that I wrote about it.  He doesn't want anyone to see our (my) weakness.  He is worried about my obvious sadness.  Yes, when it comes to a crisis we are very different.  Jeff wants to push forward and force his way through an issue.  I like to hide and cry. We are very different in many ways.  But I told him I get to handle this my way and would be happy to listen to his suggestions on how to suck it up and be tough but ultimately I have to be myself through all of this.  He loved that answer!  Insert sarcasm. We are still very much the same dynamic we have always been.  We love each other fiercely and drive each other crazy.  I'm still good with that.  And I know he is too.  No couple should ever have to do this.  Who wants to fight at this point?  But we do fuss at each other. Again I'm sharing information that makes him cringe.  But I can't hold back my honesty of what this journey really is.  I can't hide it. This is as real as it gets and I refuse to sugar coat it. Stress, lack of sleep,  effects of medicine and raising children and  the farm and money....... our list goes on and on.  We've called a truce because we love each other more than we want to get our points across.  I will love and care for him until, well, forever.   And he loves me and the kids more than anything else and he will continue to love us forever.  We shouldn't have to be in this place that was once our  happy and semi-perfect life - but we are.  Thank goodness we are here to stay. Together. We're all called home one day. Everyone of us. 
 A little good news today went a long way.  Thank you God!
We have one distinct prayer.  Please let Jeff's platelets get to 75 so he can continue this medicine.

A new blood test on Monday will let us know if we are on track.

Keep praying,
Jeff and Leta

Onward

Jeff's latest platelet level is 53. So he is still right on the edge of not being able to take his medicine.  I called San Antonio to see how we needed to proceed.  Wouldn't you know our doctor and nurse in charge are both out of town.  I spoke to a lovely lady named Tracy.  She said there were orders left that stated Jeff should take his regular dose of medicine if his count was above 50.  That contradicted info I was given early in the week that indicated a lower dose if his platelets were between 50 and 75.  Since the doctor and nurse were out of town she couldn't address my concern.  Which really upsets me because Jeff has a constant bloody nose.  His platelets dropped 40 last week.  If they do that this next week he would not be clotting very well - at all.  Like she said, "It's probably not safe to use a razor." The lady understood my hesitation but repeated for Jeff to take all his medicine.  Ok.  That sure makes me feel vulnerable and unheard.  Slightly like I could kill someone. I called Dr. Patel and he is out of town.  Good Lord!  His nurse is going to call me back.  I just feel like I need to tell someone that I'm worried Jeff could have some "bleeding to death" issues and that makes me more than a little nervous.  I did tell the receptionist that we WOULD be there first thing Monday morning for a blood test.  I ordered it!  I can't wait another 5 days to see if his counts drop more. Maybe I'm overreacting.  I know I do that sometimes. It's just that I'm so tired.  I'm so tired of all of this.  I'm not myself and I feel like I can't do anything right.  All I do is laundry and feed my family.  Anything else is extra and requires planning and energy.  Like I really need to clean out my purse but I just can't do it. Because Luke has a track meet and I only have enough energy to do one or the other. Does that make sense?  And possibly I won't be able to cook supper tonight after all of this.
So in perspective we are really okay.  Jeff is still able to take the trial medicine which is hopefully working.  Our battle rages on.  We are not in control.  We are doing our best.  We are surrounded by people that love us and take care of us everyday.  One way or another it will all be okay. 

Hanging on,
Jeff and Leta

A bump in the road

I've mentioned in previous posts that Jeff's blood counts have started dropping.  He had another blood test on Monday and they have dramatically dropped, especially his platelets.  We have been on the phone all morning with the dr's at San Antonio.  Here's what we know.  Platelet levels of 50-75 would mean Jeff would have to lower his dose of medicine but still continue.  A count of 50 or lower means that Jeff would not be able to take the medicine for at least 7 days and then only if his counts rebound.  His platelet count from Monday was 54 - right on the edge.  Of course Jeff wants to push forward and feels like he can will his body to produce more platelets.  Unfortunately science dictates this outcome and not Jeff's will.  He will have to have another blood test tomorrow before they will let him continue.  He is pissed.  You all know Jeff.  I just had to give him a big pep talk.  This fight is NOT over.  We have regrouped before and we will continue to do something even if he has to take a break from treatment.  I have to say I am slightly relieved.  Of course I want Jeff to continue treatment but this has been very tough on him.  He has experienced extreme fatigue which makes all his pain issues worse.  His insomnia has tortured him.  He even had a night last week when he slept zero!!!  I think his body needs a break.  And I know his mind does.  The other problem with low platelets is Jeff's bloody nose.  It was gone for a week but has come back with avengance.  If his platelets took another extreme drop he could have a serious problem.

So we are feeling a little low this morning.  Frustrated. Angry. Questioning everything. Does it have to be this hard? Why can't Jeff catch a break?  Is this medicine working?  Are we doing the right thing?
Goodness I need to stop that list. We are praying for higher blood counts so Jeff can continue in this trial.  We are praying the medicine is working.  I am praying that Jeff will sleep so that he won't lose his mind!! 

We should know results by Friday and that will determine treatment.  We'll keep you posted.  Thanks for being on our team.

Jeff and Leta

Together again

We are all home - together!  I love that feeling.  Jeff and his brother, Ron did fine in San Antonio without me.  Huh.  They did a bunch of boy/brother stuff that Jeff and I don't normally do.  Which is probably a nice change for Jeff.  Usually I like to read, nap, talk walks and perhaps get a pedicure.  They were adventurers and went exploring.  They took a day trip to Corpus Christi and Port Aransas.  I think Jeff enjoyed the energy in their trip and doing new things.  We can't thank Ron enough for helping us out.  It's just one of those things you should never have to do by yourself.  And thankfully Jeff never has.

The kids and I had a great time in Houston at the stockshow.  Our lambs didn't place but I loved the way my kids worked hard and got along.  We got to be around some good friends and see lots of new things. It is such a great experience that we are blessed to do with our kids. On the drive home (about 12 hours) we stopped in Dallas and stayed at the Gaylord Texan.  That is such a long, tedious drive.  It's better for me to break it up.  We did a little shopping and got to see some cousins.  Perfect!

So now we are home and it is spring break.  The weather is supposed to be beautiful and in the 70's all week.  So after I finish ALL the laundry we are planning to play with cousins, picnic at Palo Duro Canyon and cook out some steaks.  I hope Jeff gets to have some fun with us.  His nose bleeds are back.  It is very upsetting to him that he can't control this little symptom.  He is also beginning to feel a lot of fatigue from the trial medicine.  His blood counts have also started to drop. Dang it! We were under the impression that this medicine would not affect his counts but they said other patients in the trial are having fatigue and lower blood counts.  Disappointing.  But I think that's how it goes in a trial.  They don't always know how people will respond.  So we are praying for: steady blood counts so he can stay in the trial, less fatigue and especially praying for the nose bleeds to STOP.  I have to be honest, some days this is all becoming too much.  It is hard to maintain our energy and stay happy. Or maybe I should say "content".  Because truthfully we are not always happy.  But it's what we strive for everyday.  Jeff is going to scan around April 25th.  He would like to be able to take the medicine until then and see if it's working.  Please let it be working!

Enjoying the sunshine,
Jeff and Leta

Spreading out across the state of Texas

We made it home Thursday night and we're home for a couple of days and then we are doing it all again.  Jeff is trying to get some work done and it looks like the weather is cooperating.  We had a brief snow last night but this morning is gorgeous!  Luke and Jeff headed to Hart to take a load of cattle to wheat and work on some fence.  I hope the sun shines on their heads all day!  I am trying to do all the laundry that accumulated and clean the house a bit, just so it's not too embarrassing.

Next week our crazy schedule will begin again.  Jeff goes back to San Antonio on Sunday.  His brother Ron will be going with him.  He has another round of blood tests and they are back on Friday.  Last week the trial study gathered data on the absorbtion of the medicine in capsule form.  Next week they will do it all again with the medicine in tablet form.  After that he will only have to go to San Antonio once a month to get his medicine refilled.  And it looks like that can be a day trip!  Yippee!  Sometimes it is frustrating to be spending our time down there when we know the testing is not benefiting Jeff directly.  But, we are glad to be in the trial and we hope the research they are doing now will lead to a fabulous drug that will help a lot of people.

The kids and I leave on Tuesday to take our lambs to the Houston stock show.  It's a lot of work but they are very excited to go.  I have to say that the Houston Stock Show and Rodeo is a BIG deal.  It is a wonderful place to go.  The barn is climate controlled and they have tons of exhibits and educational attractions and of course lots of things to buy!  And the area where we stay is familiar to me because of all our time at MDA.  So it's nice to be able to get around and not feel lost in the big city!

Jeff's nose bleeds are better everyday.  He is very thankful they are almost gone.  The medicine is still upsetting his stomach but he seems to be tolerating it okay.  His insomnia is still around but it's not every night.  The dr's in San Antonio told us he will need to rescan the last week in April to see if the medicine is working.  So that will be our next step.

We're looking forward to a nice spring.  I hope Mother Nature gets the word! 

Jeff and Leta