Caregivers Journey

I think about that day when cancer took away, our security, happiness all the things we had before. The fear inside my soul, the anger in my heart,  the things the kids would have to endure. I flashed regret for all our stupid fights, the times I said to go away while now I begged God to let him stay. Sitting by his bed wondering if he knew all the love I have for him even when we disagree, if he had to go would he ever know all that he means to me. Scared to ask the questions, maybe didn't want to know, the answers a heavy mystery. Living with uncertainty would soon become normal for this family.

I cry myself to sleep thinking about life with just me, I could never measure up to us. Two best friends, lovers, two people meant to be. I lay in our bed snuggled up with our kids feeling incomplete. Trying to hide the tears and my pounding heart beat. Never wanting to look weak. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Sunrise, sunset, even when only the stars are awake he needs me. The hospital is where we live, we trade in the sound of kids playing and comedy on the TV for the deafening of the beeping IV. People come and people go forgetting this is the only life we now know. Kids look forward to weekends only for visits and hospital food. Wash your hands, don't be to loud, the medicine makes him sick. I know it's hard to comprehend he has to have it to feel well again. I know you understand, it's still not fair I miss our family all together too. We will see you soon, never forget Daddy and Mommy love from the earth to the moon.

I cry myself to sleep there is only one of me and I need two. One for him and one for them. I try so hard to be it all, do it all,  can't let even one of them fall. I lay awake and weep for the memories I want to make instead of the struggles and the smile I fake. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Happiness now is the days he gets to spend at home. Excited and afraid, the family is together, I wouldn't call it bliss, no nurses or doctors a button a way, what if there is something I miss. Appointments, treatment, tests, out of the hospital and still no rest. Kids sleep at times in an emergency room chair, another transfusion, blood or platelets, oh look babe your getting some hair. Medicine refills, no money for bills. Yes my loves I can come to your festival at school, I promise I will try to take you to the swimming pool, I didn't forget I am just unorganized, no dad can't go his immune system is still compromised. All the fighting to live for his kids and his wife, then he breaks me by trying to take his own life.

I cry myself to sleep, I am not as strong as they think at all. If I was, why do I lay here at night and bawl.  Would they all still love me if they knew my wonder woman act was not real. A mom, a wife, a caregiver, stress is what I feel. I can't think only act and nothing I do is based on fact. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

It's been 2 years now living in heartbreaking cancer hell. We get good news they don't see one active cancer cell. Doc says treatment has to stop, another year of maintenance chemo was planned. The benefits however don't out weigh the risk at hand. Remission, a loaded word but we know the definition. He is better, only they say his health will stay in bad condition. We know it's a blessing, a real life miracle before our eyes. We are expected to be happy the cancer it was defeated. It's hard for people to understand that we still feel cheated. There is no going back to the way things were, life after cancer can never be like it was before.

I cry myself to sleep, even now no sobbing to sleep transition. I should be felling better the cancer is in remission. You can't understand the heaviness of my heart. This journey is more like a raging storm that tore our world apart. Rebuild after this, I don't know where to start. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

It's been 3 Novembers now, living paralyzed with fears. We will make that giant milestone in just two more years. Monthly doctors visits, scans have been all great. We had a margarita party we were ready to celebrate. Having that party to soon was a big mistake. That year was filled with gut wrenching heartache. It broke his spirit when we lost mamaw, saying good by was so hard. We also lost 3 beautiful friends, all this loss caught us off guard. Why does god take the good people my daughter asked leaving hospice care, I didn't know how to answer why god took Aunt Janet instead of answering my prayer. Losing her, a piece of my broken heart did wilt, at that moment in the hall is when he and I discovered survivors guilt.

I cry myself to sleep, Will this unrest end before my heart stops beating? This monster in my life is so defeating. Cancer took all these angels away, from their loved ones who watched them fight for life every day. I have prayed, pleaded and tried to understand what the purpose of all this in my life. When I was a little girl I didn't dream of being a cancer wife. Mornings come, the evidence is gone, another night with tears instead of sleep but show the must go on.

Last year was impossible how much more could we take? There was no more pieces big enough to brake. Our heart had been broken, then shattered, We looked to God again to be the glue as the pieces we gathered. It took some time for God to heal our hearts amen, but just like before we found our happy again. After all until now all his blood counts were stable. Yes until now, to tell my kids again, would I be able? This time chemo won't help him get well, the only thing that could save him was donor stem cells. We fought blood cancer, we walked with LLS only to find out that the treatment caused him to have MDS. What in the world was this he had wrong, a bone marrow disorder and this new journey would be long.

I cry myself to sleep, I can't go another round. I pray to God above on my knees on the ground. I told him, Lord Jesus I am so angry with you, I don't understand your plan, I don't understand how strong you think I am, I can't do this again, you can't think that I can. I am not as strong as thee, you are Mighty God and I am just me. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Bone marrow biopsies, weekly blood test, he gets sicker and sicker, no time for rest. More time away from the kids they are devastated, but we are all happy that he has had healthy stem cells donated. We pack our bags while talking about funeral arrangements and what I will do if he don't make it home. I have not fought with him this long and hard, to lose the love of my life to myelodysplastic syndrome. Five long weeks at Markey, chemo, throwing up, diarrhea, swelling, dementia, no smoking and then he tried to die in front of my eyes. It's not the first time he tried to leave me, he previously had 6 other tries. Now I know he didn't try to leave I just speak how I feel, If he ever left me unwillingly how would I deal.

I cry myself to sleep, I want to go home with my kids I can't take it here I am spent. I am here in a room, no Aunt Janet to vent. She was my rock and solo cheerleader, now she is gone and I really need her. With her I was me, didn't feel I had to pretend to be strong. I didn't even have to speak and she knew what was wrong. I don't take for granted there were many who care, Lisa and Karen I know god sent you there. Mom did her best at home to fill my place, it was hard on her keeping up my pace. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.

Finally we make it back safe and sound, after miscommunication and the correct blood counts were found. So far he's alive and doing okay, we are finding a routine, living day to day. Ups and downs are part of the path, so many pills, finally got rid of the tricath. Many days he is sick  as hell and others he is doing well. I must go to work because we need to survive, the kids need to eat so even though he shouldn't he has to drive. I will never not think about the mess cancer has made, I will never feel secure or not be afraid. I don't want him or any one at all to think I wrote this to complain. I love him forever and having him here is worth all the pain.

I cry myself to sleep, it has become a routine, the kids are now twelve and fifteen. When he got sick they were seven and ten, but this is now and that was then. So much energy and time has been used, while cancer made me hurt and feel abused. I have withdrawn from some of life and people I love a bunch, because I wanted to just stop losing those I people to cancer so much. I hoped it would work, no I couldn't keep it at bay , because now despite my efforts it's trying to take my grandpa away. Mornings come, the evidence is gone, another night with tears instead of sleep but the show must go on.