4 years with NED

I went to the Medical College of Virginia yesterday to get my biopsy results.

It was my "it's been 4 years since your transplant" appointment.

I'm so grateful to report there is still No Evidence of Disease (NED) in my blood or my marrow. 

I'm 100 donor cells and my immune system is getting stronger.

I even got the final phase of my "baby shots" yesterday. It's finally feeling like I've turned a corner and my bone marrow transplant is getting further away and my life is coming back.

It's taking me a long time to get my strength back. I also struggle with ehlers-danlos syndrome (a very painful connective tissue disorder) and it slows me down.

One more year and my leukemia will be considered CURED.

5 years after transplant with no set backs is the marker for curability.

12 months to go. How exciting. Looking back at my journey and seeing only 12 months left? So exciting!

Craving salt?

It's a week of doctors and more testing in the land of Bone Marrow Transplants.
My latest diagnosis is POTS. 
Postural Orthostatic Tachycardia Syndrome (POTS). 
What the heck is it?
POTS is a form of dysautonomia (explained) that affects the flow of blood through the body, thereby causing dizziness when standing. Technically, someone has POTS if their heart rate increases by 30 beats per minute or their heart rate is greater than 120 beats per minute within 10 minutes of standing up.

What is dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.

I had been standing up and passing out for months. Finally, the BMT cardiologist tells me I have POTS and things begin to make sense. He starts me on medication to raise my blood pressure and another one to keep it raised once it gets there.

 Solved? Sort of. The medication needs adjusting and tweaking but eventually balances out. Fluid should be increased and salt intake should be increased. 

If you think you have POTS there are several Facebook groups and websites that help tremendously navigate symptoms, etc. 

A small update

Romans 8:28 

28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

I got 7 vials of blood drawn yesterday. 

They are running some special tests - I've got some odd reactions going on. I’ve got the shakes, actually. My legs and my hands. I don't think it’s related to my bone marrow transplant. But who knows, really?

Doctor visits.

X-rays.

Blood draws.

Not feeling well.

Being tired all the time.

Having to ask friends for rides to appointments.

I’m sick of it. All of it.

I want to go back to 2013. Before I had cancer. Before I even knew what leukemia was.

Back to when my kids were still home and they ran through the house laughing and fighting.

I feel like it was October of 2013 and I was told I had leukemia - I turned around - and suddenly it’s 2019 and I still feel like crap.

The shaking makes it hard to type and write. But I wanted to get out how I was feeling. 

I try to focus on the good things.

I feel better than when I had my bone marrow transplant in 2015. And I feel better than I did most of 2016. But I’m not feeling as if I’m improving at a steady rate anymore. 

I guess I’ll see how this latest lab work shakes out. (Ha, get it, shakes?)

And, most importantly, I haven’t lost faith. I still believe God heals and that all things work together for good. <><

3 years since transplant

My birthday cake, baked by my 10-year-old niece.

In the bone marrow transplant world, the date of transplant is celebrated as a birthday. The day my body got an all new immune system from my amazing donor in Germany.
Yes, I know who he is. I get to email him. And write letters. And send pictures. It's wonderful to be able to send him updates and for him to see his generous donation in action.
I wish I could meet him. Wow, I wish I could meet him. I'd probably cry. But I know I'd give him a huge hug. 
One day I'll travel to Germany and visit My Otto. That's what we (my family and friends) called him before we knew who he was and what his name is. And now, he signs his emails Your Otto. I love it.
So, it's been 3 years since my transplant. There has been No Evidence of Disease (NED) since transplant. No complications. No issues at all.
I'm very lucky. Some of my friends who have had a bone marrow transplants haven't been so fortunate. One has died. One has had complications and now has an ostomy bag. 
Before my transplant I was given 3-6 months to live. It was July. I'd be dead before Christmas. Because of God's grace, my donor was found and my life was saved on November 18, 2015.
I feel like I've been given a second chance at life.
But it hasn't been an easy road. It's taken a while to get my strength back. I asked my doctor how long it would take to get back to "normal." He said, "it takes as long as it takes."
Ugh. Not what I wanted to hear.
But, 3 years later, I'm getting stronger. I'm working hard to get my strength back. Physical therapy. Rest. Knowing when enough is enough and not overdoing it.
I go back to the transplant clinic in a few weeks for another biopsy to check for leukemia. Am I worried about the results? You bet. I hate the biopsys. I hate the 2 weeks of waiting to get the results. 
The doctor said the leukemia could still come back. But when I hit the 5 year mark, I'm considered cured.
2 more birthdays to go. Then I can exhale. Then I can relax and not feel like leukemia is lurking just around the corner, at the next biopsy, just waiting to be discovered.
I wish I wouldn't worry about it and simply live my life - enjoy my life. But I'm always worried it's just around the corner.
God says not to worry. He's in control. He's got this. And, logically, I know this. I believe this.
Why can't I just let go and trust?