It is just another reminder that Dave is no longer here. Having the blog meant we were still fighting.
That he was still living.
When I found out Dave had cancer, I researched and read anything I could on multiple myeloma. I followed a lot of other blogs from patients of MM and/or their caregivers. One thing that always stood out to me would be the long duration between posts or no updated post at all. Is this person in remission and has nothing new to update or did the person pass away?
Even though this wasn't the outcome I wanted, I do want MM patients who see this blog to know there was an ending. I also want them to know there is a lot of hope for a cure. I will be watching and cheering each of you on and will continue to support a cure for Multiple Myeloma.
Writing has always been a passion of mine and therapeutic as well. Blogging made me not feel so alone.
I always wanted to be the strong one. I never let my mom or Dave see me cry. My goal was to make Dave laugh or provide information and support. I was all business.
But, I would cry. I would cry at home. I would cry at work. I would cry every time I updated this blog. I would cry after every hospital visit.
I cry now.
It's been eight months since he passed and I still cry.....
I feel like purpose has been stripped from my life. I feel an emptiness that used to be filled with hope and concentrated purpose. Fighting for Dave gave me purpose.
I guess this would be considered similar to the empty-nest syndrome for many mothers. My whole life revolved around multiple myeloma. Way more than my mom or Dave ever knew. Way more than Dave would have liked for me.
It was my way to control something I could not control. Now it's gone.
Dave is gone.
Things that used to matter seem so insignificant to me now.
I might be depressed.
If I pretend that he is not gone, just busy, it hurts less. It's not like I saw or talked to him every single day.
But I thought about him every single day.
His essence and spirit is sprinkled all over my life and the lives of my children.
My heart physically aches. I guess that's where "they" came up with brokenhearted to describe a break up or death.
I realize I'm not the only person on this earth that has lost someone. But I feel like I am. I know I'm not the only person mourning Dave. But I feel like I am.
Everyone mourns differently.
Some people want to deal with it head on. Some people want to live in denial. Some people want to curl up on a ball and cover themselves in the pain.
I'm having a difficult time, honestly. I've certainly have felt a lot of anxiety about getting together with family and friends outside of my immediate family. I feel like I might cry and people won't understand why I'm not dealing with this better. Why I'm not stronger. Why I'm different.
I miss him.
That part that I'm having the hardest time dealing with is that we didn't have that "final" conversation where you say goodbye.
We didn't want to say goodbye.
We didn't want to believe that we were losing.
But, I needed that conversation with him. I needed him to tell me everything was going to be okay. For me to be strong. And, that he would always be with me.
But that would be admitting defeat. That he was dying. And Dave just couldn't do that.
I knew he was dying. I knew for a while because I tracked his numbers and could see that the cancer was taking over. The day it really hit me was when mom and I took him to Stanford for the very last time. He could barely walk. We had to get a wheelchair to wheel him into the hospital. While waiting for his appointment, he decided he wanted to walk. It was painful to see this 62 year old, who has always been so full of life, look and walk like he was in his late 80's.
When the doctor told us that the new regimen of chemo was not working, I new then. But denial creeps in like a soft warm blanket that covers your body and offers comfort. The doctor said we could try to add another chemo and see if that works, but I could tell from her eyes that she knew it wouldn't.
I knew. The doctor knew. But Dave seemed clueless. His brain was not working well by this time and he was easily confused. Perhaps, Dave knew, but didn't want to believe. Why couldn't the doctor tell him? Why couldn't I tell him?
The weeks after Stanford were filled with doctor's appointments, chemo, hospital visits, and so many transfusions, we lost count. My mom was by his side every step of the way.
A month after Dave died, Cory (my husband) had a medical situation that required him to go to the emergency room. I sat with him for over 5 hours in a freezing hospital, in an uncomfortable chair, for what seemed like forever.
The whole time I was there, all I could think about way Dave and my Mom. They spent so many hours in the hospital. Too many to count. I felt so much compassion for both of them!
The last several weeks of Dave's life was the most difficult time for all of us. My mom had to singlehandedly take care of him day and night. Dave was becoming increasingly confused and my mom had to stay alert to make sure he didn't fall or get hurt somehow. She barely got any sleep.
I told my mom he was dying. He thought he was going to beat it so she believed he would too. I researched everything on the dying process. I know that seems morbid, but knowledge is control for me.
I needed to know what to expect, what to do, what it might look like, what we should do. It was incredibly helpful knowing what to expect to some extent.
I needed to prepare my mom though. She started getting more direct with the doctor until he confessed that things were not working and that he was basically staying alive by having all the transfusions.
Dave was done being at the hospital and just wanted to be home. Bless my mom's heart. She had to be the one to sit down with Dave and tell him what no one else would. Later that night, my mom called me over and her and Dave told me that he was no longer going to do anymore treatments. I cried in Dave's arms.
I felt like such a failure and kept telling him I was sorry. I couldn't save him! He just held me and cried. Still, there was no acknowledgment from him of acceptance. No goodbyes.
The doctor had told us if we stopped treatment he would probably only live 4 days. I didn't think this could be true. We called hospice. After the nurse assessed him, she privately told my mom he would probably have two weeks based on his condition.
Thankfully, my sister-in-law, Sara was over every day to help my mom. She was such great support to both me and my mom and I will be forever grateful. It was painful to see Dave face and it was equally painful to watch my mom try to care for him and stay strong when she herself was scared.
Watching him die plays over and over in my head. Watching him take his last breathe surrounded by those that loved him most has changed me. I dream about Dave. But in my dreams he is not alive, his spirit still has Multiple Myeloma.
I understand the concept of time heals. I don't cry everyday any more.
It really hit me about a month ago when I was a work and I walked across the parking lot to my office and my great staff and I was smiling. It actually stopped me in my tracks. The smile on my face quickly faded and I finished my walk back to my office with my head down. I felt guilt. Guilt that I could actually smile. Guilt that my life continues even without him.
I know that life goes on. It has to. But I feel so different. I feel a huge shift in my life. I've become trapped in a small area of safe places. I know I'm letting family and friends down. It's so hard to dig yourself out of a hold of darkness when the person that brought so much light is no longer here.
But each day I wake up, I take care of my family, I go to work. I look forward to the day when I think of Dave and it doesn't hurt.
My mom is now at their coastal home and Cory and I have purchased their home in Visalia. I refused to think of anyone outside the family living there. Dave is everywhere in the house. His love for the house, his many special touches throughout the house makes me feel closer to him.
It is hard not having my mom down the street, but she always belonged by the beach and she has some loving friends taking good care of her. We talk most days and have gone back and forth to see one another. She misses Dave more and more each day.
I've started and stopped writing this final blogs too many times to count. But I'm determined to finish it.
This is the end on Earth for Dave, but not for the many of you fighting and winning against this disease. And to the many caregivers who fight along their loved one, you are not alone. You are in this fight too and you need comfort and love too.
Hugs
Jeana
