Tag Archives: battle

The Long Haul….

This past Sunday was the beginning of a very difficult week. Mark took the higher dose of 2 Ambien instead of the one he had been taking and as a result when his UTI woke him up, he fell, not once but twice and was very disoriented and since he didn’t let me know about the fact that he took that extra Ambien, I thought something was majorly wrong and called the doctor, who had us go to ER.

In the process, I discovered some things I would not have known otherwise …. he had blood in his urine (apparently since Friday) and his lower extremities were very swollen. (could never see that as he had been wearing, socks and long pants a lot.) I indeed thought this was alarming (though the ER docs. didn’t) and called our Allo Nurse when we got home to let her know. She had him readmitted. Being readmitted to the hospital is very normal and a big reason they have transplant patients stay so close to the hospital.

Mark wasn’t happy and to make matters worse, the communication at the hospital and between the hospital and the clinic was terrible!!

In short, his UTI- though viral- is clearing up. He is very tired, but at least he is at the apartment and at his next Clinic appointment, we have plans to complain about several mishaps that occurred due to communication break downs this week.

We are waiting results of biopsies on his upper and lower GI tract. Hoping to find out exactly what is causing his stomach to swell and hopefully have a plan to get him back to normal. 🙂

It has been a true blessing the people who have come to stay with Mark and take part in his caregiving a week at a time! First, Carmela and her husband Brett- some of our best friends who just happen to live in Oklahoma! This was perfect as they came when I had to take Shyanna to college and this could have proven to be an incredibly difficult week for Mark, but having the two of them with their incredibly positive attitudes, encouragement and love pouring out, made it a bit easier on him. (Of course everything in him was wishing he could bring her to college- so it was an emotional time.) The perfect people for that time!

The next person to come was Andrea, Mark’s step mom. She is a nurse and her expertise was perfect as he had developed his urinary tract infection, had become somewhat dehydrated and had to be given extra fluids at clinic and his medications were changing up quite a bit. It made both of us rest easier to know that she knew a bit more about the medicines and had her nursing knowledge to care for him! Again, the perfect person for that time!

Currently, his mom is with him and that, too, is perfect!! Who doesn’t want their mom when they are having a rough time… and this has definitely been a difficult week! He hasn’t been feeling great, hasn’t been resting well with the UTI  and it’s been frustrating. There is no other love quite like a mother’s love….

In the mean time, I have been able to, after four and a half long months, get home, spend some real time with our girls (who are still kids, by the way, and need their parents) and take care of things around our home. Although, to be honest, I usually have a day or two each week I get to be home that all I want to do is lay around because I am utterly exhausted. I’ve followed Mark around the country and raised four kids who were all born within five years, and had various things happen in my life, but THIS has been the most that has ever been asked of my emotions, mind and body in my entire life day in and day out. I am so thankful for all the support I have. I believe I may just crash when this is over.

Our family and close friends, especially, have been a rock for us! It’s also been great to have the opportunity to strengthen relationships with some family that we haven’t had the opportunity with as much (for instance, Mark’s dad is so much like Mark, that it is amazing and it really brought me and the girls a calming feeling when he was around) and some people I didn’t know as well before all of this and have had the chance to get to know- and I thank God for them daily, now. The way God has kept us all safe and secure and provided for not just needs- but also some wants- has been incredible!

I would be lying, however, if I said that I CANNOT WAIT for the month of September to pass and my HOPE is that in October Mark can come home and we can all just live in one place again….”I can do 30-40 more days of this…. ” “I can do all things through Christ who gives me strength.” These are my mantras and I now compare myself to the little train that could…. Or Dori, the fish who said, “Just keep swimming.” I have to just keep believing!!!

for_i_know_the_plans-70110

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Kick it in to High Gear – Preparing for Battle

Hi! Today is Monday, June 30th. Today we go to the doctor to get blood levels checked and tomorrow we go again to have the way the Busulfan chemo they will be using metabolizes in Mark’s body so they can give him the dosage rate that will work best for him. We have one week before we delve into the “transplant process”. Spelled out by readmitting to the hospital on Monday, July 7th, BuCy chemo on Tuesday, July 8th, a day of rest on Monday, July 14th and Transplant on Tuesday, July 15th. Apparently, from what they say, Mark’s hardest time may be the two weeks following transplant when his levels are low and the new stem cells work to take over the place of his old. Right about the time he is being released from the hospital, my girls and I will be taking our oldest, Shyanna to her college to begin the new and exciting chapter of her life about 4.5 hours away from us.

So, this morning I read a little devotional page shared by a friend on Facebook from a book entitled “Keeping God in the Small Stuff”. It may seem odd, but I believe this is the next purchase I will make for our family. (We have been doing something weekly together to keep our focus though we are separated distance wise most of the time, we realize how important it is to stay together in our faith as we fight together in this battle.) The thing is, that one of the biggest lessons we have learned so far is that we NEED to focus little. Step by step. One day at a time. There is just too much that overwhelms you when you get ahead and try to take on too much with something like this.

This is the passage shared today:

photo.PNG

It reminded me of the fact that over and over again in my life, when i have come to a challenging time, I have had to sort of “Shift Gears”.  I told my girls recently, this same sort of thing. The Bible is clear. Jesus told his disciples, ” In this world, you WILL have trouble.” He didn’t say you might, or could…. “YOU WILL. But, take heart, for I have overcome the world.” So, as I read this today, I was moved. Moved and I reflected. I wish I could say I had it all together all the time. But, I don’t. I absolutely don’t. But, what I will say, is that God created me to adapt and change and this is what I want to share.

When I was getting ready during labor to push, I always took a minute to pause and throw my hair up in a pony tail. I was preparing for the workout ahead. When I teach fitness classes, I warm up, to prepare. When we drive in the mountains, our vehicle is used to a more flat and constant ride. Suddenly, we are climbing and descending very steep inclines and declines. What is necessary? SHIFTING GEARS.

Mountain roads

Recently, before this battle, I faced another littler battle. I had to stand up and against something very dear to my heart. I felt the need to stand up for those who weren’t standing up for themselves and who felt bullied and pushed around. It was a tough decision, as I knew that it would cause me to lose friends, but I also knew that it would be hard to look myself in the mirror if I stood by and did nothing when I knew how these people with less power (or seemingly less power) continued to feel powerless. I understood that God himself would not want this to continue and that if it was so heavy on my heart, it was for good reason. I filled myself up on God’s truth about defending others- especially those who need it. About being courageous and about the importance of lifting others up and encouraging them. I went into a battle filled with truth and focused on the love I had for those who were smaller- those who needed someone to help them. I didn’t like the battle, but I saw it as necessary and so, I went forward after filling myself up on God’s word and with much prayer.

runner

Now, we are preparing for the battle of our lives, and this little passage reminded me of the importance of the shifting of gears again. Of the preparation needed to be ready. So, my focus is that this is where we are and what we need to focus on isn’t where we are and what is going on- but on GOD.

Isaiah 40:31
… but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Oddly enough, this is the same verse I have already shared with two of our girls. Our oldest, as she heads to college at Chadron State to play basketball for the Eagles and to learn all she can about Human Biology before heading to Med School. Our third daughter as she is a runner… and feels like God made her to run- how fitting this verse was for her as she discovered this calling.

Isaiah 40:31 might just be my new life verse. I need my strength renewed. I need my hope to be in the Lord. I close my eyes and picture soaring on the winds beneath like an eagle… hitting that pace in my run where I feel like I can just keep going – it’s a good pace. This is my prayer for our whole family right now.

God, help our family to focus on the hope we have in the Lord. Let our strength be renewed daily and even minute by minute and second by second as we focus on our hope in Him. Let us run this marathon and not grow weary. Let the winds and the turbulence lift us and carry us higher that we might soar on top of it. In Jesus’ name I pray. Amen.

eagle