Tag Archives: hard

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!!!

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The Truth Is, This Is Hard

Ok, so the whirlwind is over.

We know what he has, we know why he was so sick super fast.

We know what needs to happen and now we wait.

This is hard … for him, for me, for our girls, for anyone who knows and loves or cares about any of us.

We all want to do something. We all want to help. We all wish this was a bad dream.

This is where I am torn. I want to keep everyone up-to-date. I want everyone to pray. I want someone to be a perfect match for him so he can get better! But, I miss so much our normal  life. I want it back.

This life isn’t normal for us at all. We are a family unit. We hang out all together a LOT. We are big on being at each other’s events, games, moments, etc. We always have each other’s backs. We are a family who all sit around our table and eat dinner together at night- whether that means 4pm or 8pm according to events happening that day.

We understand each other. Shyanna, Nikayta and I are introverted to the point that sometimes we just have to say, “ENOUGH. I don’t want to be around any people.” Tanise, Mark and Cadence seem to get energized from people. But, we all enjoy our space and the ability to live life the way we feel like living. I miss sitting in the sun absorbing as many rays as possible all alone in the quiet stillness. I’m sure the girls miss mom and dad being home.We miss our cuddles and movie times and the ability to look forward to the plans we had and have and feel happy and free.

The plans…. the celebration cruise we just cancelled. Thank God they are giving us our money back as Shyanna will need a car for her 4-5 hour road trip to college this fall. Graduation planning. Yeah, that’s still happening, but it isn’t looking quite the way we had planned. I want to be there and be excited for her… but it’s hard for her to be excited right now. I get it. But, I hate it. She was too tense to audition for the Commencement speech and you know what? It was a GREAT speech that she wrote! This makes me sad. As a parent, you don’t want your kids to be stressed.

And it isn’t just her…. it’s my other daughters, too. Going to school and trying to finish strong and keep their heads up while they worry and miss Mark and I …. And it’s Mark. Look at him laying in bed. I see him staying positive and making us all laugh and I think, “How is he able to keep this up?” Then I see the tears break way as he, too, is wishing he could be there. When he tells me he wants this event to be as normal as it can be. He doesn’t want them to bring up him having Leukemia and it is because, he, like me, wishes that our girls would be able to have what they are used to right now. He wishes they could have that normal, happy, celebrating life.

So many questions and concerns from everywhere and we are learning to live more in the moment. Our thoughts cannot really go beyond who is the match and let’s be in remission right now. It’s just too much and so far out of our control.  The doctors keep saying, “Focus on what you can control.” And we are trying. Exercise, Food,  Hygeine. I believe we also can control our attitudes but I would be lying if I said that sometimes, that is hard! It is a little harder I think when you are locked up all day and night within the walls of a hospital room and an oval hallway.

We continue to be thankful for love and support. Some of it is constant and unchanging which means so much- some of it is not as consistent and that is ok because we know everyone has their own life. Some people have been completely no where on the radar and you know they care- but it must be hard for all of you, too. Everyone handles everything in their own way. It is hard on everyone.

So, for now, I feel my job is to continue to be as “real” as possible. I have been crying almost all morning off and on. Now, I write. I will go run steps and do some pushups and that will help, I will get dressed and put on some make up and do my hair. That will help. But, the reality is that we are very helpless right now. We are relying on God and others.  And, we are trying to control what we can and to make this time as normal as we can for our family…. but the truth is, we don’t even know what that is right now.

Living in the moment.

Remission/ Donor. We need both. Space and love. We need both. Hugs and prayers. We need both. Understanding and Wisdom. We need both.

This is me being real. This is how I feel today. I’m sorry if  it upsets anyone. But, I was told to be real…. and that’s what I am trying to be.

PS- Mark wanted to make sure people knew that he is not allowed to have flowers (unless they are balloon flowers) because of the spores, etc. THANK YOU!