There was so much information coming out of his mouth, but all I could hear were fragments of what he was saying. I kept nodding to keep up the apprearance that I was understanding what was going on, but all I heard was things like, "you are JAK2 positive....life expectancy ten years...chemotherapy...trial studies...bone marrow transplant". The room was spinning. I could hardly breathe. Was I going to die? Will my boys grow up without a mother? Why me?
I needed to get out of that exam room. I needed to breathe. I needed to wake up from this horrible nightmare.
This all happened two years ago, almost to the day. I was diagnosed with a rare bone marrow disease called Essential Thrombocythemia with a JAK2+ mutation (or ET for short...because I didn't already feel like an alien already!) where my stem cells mutated causing my body to over produce platelets which could turn into blood clots. Not good. The day that I found out my mother was watching my boys so that my husband & I could meet with an oncologist. I texted her asking if she could watch the boys for a few days. I knew that if I saw their faces that I would breakdown & scare them. We got home & all I could do was sob. I fell asleep in the arms of my husband crying as he prayed over me.
The next morning we had an appointment with another oncologist that specializes in bone marrow diseases that the other oncologist set up for me. We scheduled a bone marrow biopsy for a few weeks later. For an entire month I grieved. I cried every single day. I wanted to crawl up into a ball & not leave my bed. I wanted to shut down. But I couldn't. I had three boys who needed me. Though time seemed to have stopped, life kept going on around me. Food needed to be made, laundry had to be done. I had to keep moving. My family needed me.
A month later my bone marrow biopsy results came back that other than my mutation, my bone marrow looked good! This specialist believes that since my marrow was in good shape & because of my age that I should live a typical life expectancy! It was like I had been holding my breath for an entire month and I could finally take a breath. He explained that I basically have a form of blood cancer, chronic leukemia, or as they call it 'a happy cancer'. I will live but I will need to be on a daily aspirin & a daily low dose chemotherapy drug for the rest of my life.
OK, I can handle that. It sucks, but at least I'm not dying!
At the time of diagnosis (found with routine blood work), I had no symptoms. They asked me if I was tired or exhausted. I said yes but I thought that was suppose to be normal because I had three boys that I homeschool & run a business (a shout out to The Vintage Honey Shop, woot-woot)! I stayed symptom free for a few months which was great because coming to terms with a chronic disease was more than I could handle. Slowly I began to become more tired. I felt heavy, like there was an elephant sitting on top of me. It was like I was coming down with the flu. You know how your body starts to feel achey? Your bones, skin & muscles begin to hurt? Like all you want to do is crawl into your bed & sleep it off? This is how I feel everyday. Thankfully I have a pill that helps combat those symptoms but there are a few hours everyday that I'm feeling like a truck has hit me before the pills kick in.
Dealing with chronic pain is hard. Dealing with chronic pain is harder when you have children who need you. There are days when I am laying around all day. On those days we stay in our pajamas, watch Netflix & order pizza. In the perspective of kids it's probably the best days ever. In the perspective of a mother, I feel like a failure.
Do you know what the worst thing about having this disease is? It's not the pain or exhaustion, it's the guilt. While I'm beyond happy & feel so blessed to be alive, I do struggle with feeling like a failure as a mother. I use to take my kids to the zoo, the park, museums. I use to do craft projects with them...I was like a Disneyland mom all the time. I had it in my head that a good mom was someone who did all of those things, so when I couldn't do them anymore because of my exhaustion & acheiness it hit me hard. It broke my heart to hear one of my sons tell a stranger at the store that 'mommy is sick every days'. Is this how they see me? Will they look back to their childhood to remember mommy being sick all the time? It is more than my heart can handle sometimes.
Then I tell myself "Jennifer, you are a darn good mom! You aren't ruining the boys, in fact they are going to look back and see all the things you did with a chronic illness with amazement! They are going to see you as a fighter!"
If you are living with a chronic illness while parenting it's totally fine...and normal to feel overwhelmed. Parenting in itself is overwhelming let alone doing it when you don't feel good! Here are some tips that have helped me:
•You aren't super mom, so don't be afraid to ask for help! If a friend offers to help you out...don't turn it down! If they didn't want to do it they wouldn't have asked.
•Try to get outside as much as you can. I find that just sitting outside on a park bench while my kids play on the playground is helpful to all of us. I can rest while they play!
•If you are having a bad day physically, declare it 'Pajama & Movie Day'! No child has ever been ruined by wantching movies or Netflix all day with their mama!
•Take a big blanket outside with a bunch of books & have a 'let's lay down and read some books' kind of an afternoon!
•Order out! There is nothing wrong with ordering pizzas or something on Uber Eats!
•When you do cook, make double so that you can freeze the other half. On days you don't feel good you can pop a casserole in the oven!
•Do NOT hold your feelings inside of you! Look for an online support group on Facebook. It's sometimes easier to vent to strangers than to your friends & family...especially when they are going through the exact same thing as you!
•Try a new hobby! I've recently been experimenting with painting & needlework. Doing something new helps keep my mind off not feeling good!
Just know that you aren't alone. You are an awesome mom & your children will grow up stronger for it! How can they not, they have a fighter raising them!!!