Happy Days

Happy Days

Friday, November 27, 2015

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.

Tuesday, April 7, 2015

Strength and Faith


Not a day has gone by since we found out that Mike has secondary MDS that I have not cried. I have cried tears of fear, tears of happiness at a remembered memory, tears of confusion and tears of sadness. I have cried because of a song that played and because I lay next to him in bed knowing that there may be a day in the nearer future than I am prepared for that I don’t get that privilege.  I cry so my kids don’t have to and so they can, so they can feel secure. They have to know they are not alone, if they see nothing but strength how will they know it is ok to be scared, confused, sad, and even happy. Some people see this as weakness or a lack of faith. Since this show of emotion is out of my control I don’t believe that. It is just how my spirit is processing and preparing for the fight ahead, my tears cleanse my spirit so that I have the strength to get him through the fight we are getting ready for; I will need to be his rock, his cheerleader and his shoulder so I need to deal with my feelings now. So this does not make me weak it is the process of making me stronger. I also don’t see this as a lack of faith, I trust my God, I lean on my God, my God is who I cry too, but to trust God is also to trust his will and to know that his will may not be the same as mine, he may need my best friends for something that I don’t understand leaving me here to grieve his loss and to pick the pieces up and put them back together so rather I see my tears as a confirmation of faith. God’s will is not always answered prayers. If I told you that I trust God will save Michael’s earthly life I would be lying to you, I do believe that his will is going to be done and that he will make the best decision for the love of my life and that gives me some peace, but it still causes human and spiritual emotions that I cannot just turn off.

                I also want to say something about marrying your best friend, when you marry your best friend you have something precious it is a different love but also deep friendship, intimacy, a level of knowing each other that is hard to describe, honesty, vulnerability, trust. Michael is truly the only person in this world who knows me inside and out and me him, he is the only person I fully trust on this earth and there is no one else I can be myself around like I can him. He knows all my funny secrets and all my serious ones. He could ruin my street cred with one Facebook post lol I have been told by other friends or just people I have come in contact with that it is weird that I always “got” to have Mike with me or that I don’t like to do things without him. First I don’t “got” to have him with me, I enjoy having him with me no matter what I am doing and have since our first date.  Don’t get me wrong, I have my girl time, but I don’t need to go without him to enjoy myself, whenever I have gone out without him I feel the absence and usually call him anyway lol. We disagree, and often, because we are both hard headed, but I can count on one hand the number of times we have fought, or really gotten mad at each other. People sometimes think we are upset at each other or in a fight because of how we talk to each other but it is just us, I am his bitch and he is my asshole. His oldest sister once said that I was a female Michael, I didn’t appreciate that at the time lol but I do now. I have spent 13 years with my best friend, my soul mate and the love of my life, we have had downs don’t get me wrong, there was one time in our marriage that we were at a cross roads, however we decided we were worth fighting for and we just needed to be reminded of who we were together and eliminate the people in our life that were trying to tear us down as a family. I know some can relate to this as they are also married to their best friend, and others cannot relate. Let me tell you it is amazing to build a life with your best friend, I would not trade it for anything in the world and I feel so lucky. I, however also have a lot to lose if God’s will is to not my will, I will lose a big piece of my heart and myself that can never be replaced a one of a kind love.

These are things that have been on my mind the last few days and I will likely be blogging more as we go through this journey, even though I want to blog all the time I am usually more driven when something big is going on in my life. I share my journey as a caregiver a wife and a mother because I know that others go through some of the things I do. Maybe someone will read one of my posts and not feel so alone. Also I hope that some of my posts make others think and maybe be able to relate more and possibly know better how to respond, or at least understand those in their life that may be facing something. Everything is not as simple as “have faith” or “be strong”, just because someone may not fit into a box of what one thinks faith and strength look like doesn’t mean they are not strong or trusting God.