Blog - Jack's Caregiver Coalition

What my caregiver means to me:

When asked: What does my caregiver mean to me? I froze. I didn’t know what to write. I was overwhelmed by emotions and thoughts and memories. Can I tell you something? Before Chris and I were even married. I got really sick. It wasn’t crazy like cancer or anything, but I had a double ear infection a busted ear drum and pink eye. The day I was diagnosed with all this mess was a Sunday and Chris was kind enough to spend the day binge watching Game of Thrones and helping me with my frequent eye drops and ear drops. That was the day, I knew without a doubt, that I wanted to marry him. Because I knew he would take care of me. Little did I know what was coming, and how truly important this would be.

Fast Forward to 3 years after we had been married. The Summer before our 3 year anniversary is when I was diagnosed. Can you even imagine? You sign on for this life together and you think you have all this time to spend together and then boom, something like this hits your world. Chris spent the first 2 weeks of my treatment in the hospital with me sleeping on an uncomfortable pull out cot, granted it wasn’t the most uncomfortable place he has slept to be with me over these past 4 years of Cancer fun. That meant the world to me. I never even knew that Chris had spent time crying until I asked him to write a CaringBridge post. That’s when it all came out, I had no idea that he was struggling so hard watching me go through this because he did such a good job hiding it in front of me.

I could tell every time that I was stuck in the hospital on chemotherapy or other treatments that even visiting me was taking a toll on him. He needed his own space, and his own time. And instead encouraging him to leave and take time for himself, I pulled and pulled.  I was lonely, I was scared, and I wanted a distraction. For every chemo or radiation therapy I had I begged for visitors until the last one. Chris was there for me as much as he possibly could be without going completely insane.

What surprised me further was that after the worst chemo I ever had, the one that almost killed me, he agreed, despite doctor’s orders, to go on a Raw Vegan Retreat with me at Optimum Health Institute. This is a man that I thought would NEVER give up his meat, cheese, or eggs, but for 3 weeks straight all we ate were raw vegan vegetables, fruits, and seeds. And it changed our lives and it was the best decision we ever made. Since then I have been in remission from cancer for 2 years, but continue to struggle with something called Graft Vs host disease which in itself and the treatments for it have caused me to gain a ton of wait, for my skin to get all scaly and to burn and itch and peel and for my eyes to become severely dry.
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But even after this, all the bodily changes, all the weight gain, all the suffering I’m currently going through, he continues to stand by me and offers all the support he can. He is still taking me to appointments when he can and he never says no when I need a lotion, or oil, or cream on my back. He’s my constant rock. He’s my peppy cheerleader! He’s amazing in every way. And yes, I might still be suffering, but I still have my best friend and partner by my side! And the best part, is that now we have more of a balance. He is still supporting me, but he has more time now to take care of himself! And I’ve always been a firm believer that you have to put yourself first. You have to take care of your own needs so that you have the energy to care for others. This is a lesson that I have learned over the years, and it took me a very long time to learn it and I’m grateful that both of us understand this and can move forward together in balance.
-Amanda Meuleners-

What Jack's Caregiver Coalition means to me:

I think the Jack's mission is very important. It’s actually the first thing that Chris started to do for himself. It was after we started going to support groups at Gilda’s Club that he found Jack’s, and I’m so happy that he did. It was the start to a beautiful way to take care of himself but to also offer help to others in similar situations. Chris has made life long friends through Jack’s, but he also found avenues to have some fun and do exciting and happy things. It was the start of a new era for him. It was after Jack’s that he started to want to do more. He started working out and running marathons for Leukemia and Lymphoma Society Team in Training. He’s done amazing things and continues to do so in support of the disease his wife had and for others who have suffered the same fate.

Thank you Jack’s for giving my husband and caregiver an outlet and a support group that goes above and beyond. I’m so happy he found you! 
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-Amanda Meuleners-