My 4 tests & why I should step out of reporter mode

I only posted this as a blog because this is a LONG post. 
I didn’t immediately post on FB because it is too complicated to explain properly in a short post and I really want everyone to learn from my battle so you can help others. 

 Before I get to why I was so upset Friday with my lack of test results and heard the hard facts from my doctor let me say this…

Sometimes, it isn’t always good to be in reporter mode when it comes to your own life.

Sometimes not knowing all the facts might actually be best as I often think is the case of battling a life threatening disease.  

Sometimes it’s better to just believe you are cured and never look back instead of asking what if scenarios and stats. 

Sometimes.. it is just best to enjoy life day by day and live life to the fullest with NO regrets. Don’t worry about tomorrow. Just today.

That whole concept is so hard for me. I am not sure if it stems from my driven personality of setting goals with a game plan.. do this.. achieve that mentality. 

Or maybe it’s the journalist mindset of —keep digging into ‘what ifs’ for the all scenarios— so you can present all angles to viewers idea.

You see, as a reporter I like to know ALL the facts… the stats AND the game plan. 

That’s what I did for every story in my career. 

Why should my story be any different? 

Whatever it is, it is hard to operate that way your entire career and then face the toughest assignment of your life and suddenly flip the switch and “Let go” and “ take your hands off the need for control and just say ‘ohhhh whatever shall be shall be” — like my friends keep suggesting I do. 
I don’t just “Let go” of things. I’m not a quitter. Never have been. So why wouldn’t I want to take an active role in everything that determines if I’m here for my husband as a life partner and to watch our son grow up.

When it comes to my boys I wan to know EVERY back up plan possible to keep me here -alive and well.  

I’m not done here -and I have so much living to do.  
Ok…. Now that I had a chance to calm down I can finally write details of my doctor appointment. 

First, let me also explain. EVERY case is different. There are many types of Leukemia and among those types there are mutations. MANY OF THEM. So remember, what worked for one friend of yours may not work for another who is battling. There are so many mutations and at speciality hospitals like Johns Hopkins they approach each one differently.

Also, my doctor is very upfront and honest. He doesn’t mince words. IT’s often tough to digest his frank conversations but i appreciate his honesty.  
There are 4 tests that I wanted results for from the biopsy.
#1 How are the current cells? This looks to say -Are you in Remission.

Great—In remission. Yay. Praise God I am. You might say “Now why is she worried? Why wouldn’t she just be grateful and stop asking questions after this?” Well.. in October I was in remission when a STEM CELL STUDY that basically looks ahead to see WHAT the current cells will eventually turn into showed cancer coming back. That’s the reason I was quickly thrown into transplant.  
So, yes I am happy… but yes I am scared. Thankfully, they caught the cancer coming back BEFORE I came out of remission or they would not have been able to treat me. Basically, when most people get my type of cancer you have to get put into remission and THEN they can treat you.
#2 What are my cells made up of ? we are praying that I am 100% my sister Lisa’s DNA.

They forgot to run the tests. They have to go to the freezer and get my marrow out and run the tests.

These numbers are so so important. We don’t want ANY of my cells floating around because we knew some of those cells carried leukemia. I was 100% before – but each day more cells grow. I need 100% today.
#3 What % of my “T” Cells are my sister’s cell. (Last check it was 100% – we need it to remain at 100%)

They forgot to run this test too. They have to get my marrow out of the freezer and run this too. 

Dr. Levis described T cells as the snipers who troll the body and look for any cancer cells. They fire away and kill them all. At least we hope an pray they do! As Dr. Levis shared with me, sometimes a cell can mutate and hide against the walls from the snipers. If they get overlooked…. even ONE cell.. you can relapse. Yes.. billions of cells and just one damn cell can make you relapse.
So my next question to my doctor… 

“So what happens if I relapse. What is my next course of action then?”

His response… “You don’t want to know that answer. Just focus on doing well“

Me: “What is it?”

My doctor : “If you must know.. .most patients likely succumb to the disease and die. ” 

Me “What.? For some reason I thought I could just keep getting transplants and keep going and going — (I start to shake and cry. All I could think of was Gabriel saying Mami..– I guess I was in denial and thought I was in the clear forever.)

My doctor: This is why we need more research and more trials.. in hopes that if God forbid you ever do — that there are other courses of action we have available. We need more tools in our tool kit to fight leukemia. Right now, you have a 70% chance you will make it. Workout. Eat right.. Enjoy your son. I can’t promise you anything but I think you are on the right track. Be grateful you made it this far.”
At this point i’m sobbing and wishing Cesar was with me but I begged him to stay home with Gabriel because I didn’t want to bring him. I can’t have Gabriel see me cry all the time. Poor thing has dried my tears too many times for a 3 year old boy.  
And here is where the conversation picks up… #4— the STEM CELL STUDY –

The stem cell trial has the ability to basically detect a relapse before it actually happens because it can look WAYYYYY into the future and see what that cell will turn into.  

This is a great upper hand. Patients need to be IN remission to be treated so if you can catch something early while they are still in remission and treat the patient you are better off. 

However, So you would think THAT study would be my PLAN B – right?

I mean, after all, if they could detect a relapse down the road before it happens then there is time to find something else before something bad happens right?  

Well… I no longer have access to the study. They have my results but they are no longer obligated to give me answers.

Why?

I pulled myself out of the study because they wanted to randomize me. 

That means, they didn’t want me to get the transplant. They wanted to see “How would a patient in remission but with cancer on its way back actually do? Would she survive without a transplant?”

I didn’t want to randomize my life and yanked myself out of the study.

So, while these trial investigators have my answers and it could very well tell me how my cells are developing and if I could relapse.. I won’t know. 

All this unknown had me in tears and I went to this appointment alone. It was a lot to digest.

But if you think about it.. this is how medical advancements are made.

Some people fare better with certain treatments and some don’t.

Some live, some die.. but it’s all for the greater good of advancing technology and treatments for those who follow.

But selfishly, despite the desperate need for advancements in the treatment of AML, I don’t want to risk my life for medical advancement. I just want to be better and told I’ll be here to watch Gabriel grow up and enjoy my life with Cesar. It’s simple.  
So what can you do?

This is WHY the Leukemia and Lymphoma Society need your help and your donations. They help fund so much research. With your hero they can give my doctors more tools in their toolkit to fight leukemia. You can help expand treatment options and change lives. Please support their cause. 

#ArmorUp for LIFE®, Change your life through diet and exercise. Limit or manage the stress in your life.

Live with No regrets. Enjoy more.. take vacations.. enjoy every moment with your kids.

Stop trying to run around and do everything while your kids are doing something else.. do something WITH them. Spend quality time with those you love.

Don’t go to sleep angry.

Be prepared for LIFE!!

Loriana Hernandez