I woke up writing in my head again this morning. I think when this happens, my subconscious is trying to help me work through frustration...and sometimes the best way for me to do that is to write.
My most current frustration: exhaustion, a chemo tired.
"Marsi is too tired," I heard my husband say over the phone to a friend.
"Mommy is too tired," I heard myself admit to my children.
It is not an excuse....and not that any of you think it is. I wish it was. I wish I was trying to procrastinate a mundane task. Truth be told, when I say I am too tired, it is because every muscle in my body is crying to sit down, rest or sleep, a chemo tired.
Yesterday, I skipped out on several responsibilities that had I completed, would have made my husband's life a lot easier. In my head, the day was planned as follows: in the morning, I would go to the Shamu & You Family Walk (benefiting Rady Children's), taking Madison with me so she could walk through Sea World; following this, I would take her to gymnastics; and, then, circle back to Harrison's soccer game. I would be home by noon and could rest to my heart's content.
Unfortunately, the day did not fair as I planned.
Let me first start by saying that the Walk was really important to me. I have worked at Rady Children's for 15 years. A professional fundraiser since 1999, I helped to develop the Walk's very first online registration process. Now in its 5th year, the Walk gets amazing support from the community and I am so proud of my colleagues who have worked so hard to keep it going. The walk brings together more than just the Foundation staff.....but receives Hospital-wide support, with many walk "teams" from across Rady Children's continuum of care, a real "coming together" of my Rady Children's family.
I registered myself to walk on the Team "One Crazy Grandma" before I knew I was sick. While I did not think I could/should walk the entire course, I knew my attendance would mean a lot to my colleagues. Plus, I remembered from the way the walk is structured that Madison and I could just walk through Sea World, where Madison would get to see several Sea World animals and Shamu. While I knew I could make that short jaunt, what I did not count on was the heat. It was supposed to be 70-degrees by noon. Not so much. It was hot! Still, I did mostly OK on the walk. At one point, I sat down for a bit and my good friend Chris walked Madison through the last exhibit set up just for the walkers. When I rejoined them Madison says, "Your friend is really nice." Yes, I know.
It was a slow mile and we had a great time. However, by the time I got back to the car to take Maddie to gymnastics, I was cooked like toast. I thought, "OK, I will take her to gymnastics...I am OK to drive. And then I will drive to Harrison's soccer game and Steve can go pick Maddie up from gymnastics. I will take Harrison home after his game." (Thus, eliminating two legs of my original plan.) However, by the time I pulled into the parking lot for Madison's gymnastics, I knew I was not fit for anything else but going home and back to bed.
I tried so hard to justify going to H's soccer game. I knew all I would have to do is "sit" once I got there. I knew I would not have to carry a chair back to the car nor would I have to do anything else besides walk. Still, I also knew I was barely fit to drive as it was and could not imagine transporting my child home in my current condition.
As I called Steve to tell him I was not going to make it, I knew I was making the right decision. My super hero of a husband did not hesitate in picking up the slack. However, after returning from his game, as my beautiful son amply described the game's highlights so I could envision his team's win, my heart sank a little.
It seems like the distance between what I want to do and what I should do is growing from a crevice to a canyon. Truth be told, folding a load of laundry can wear me out. I wince when I know I have to park far away from a destination. Just making my green smoothie in the morning often makes me tired enough that I have to sit down. And this list could go on and on. So, even though my body does not hurt, the physical heaviness and consistent exhaustion is almost guranteed.
As many of you know, I am also epileptic. Last time I went through chemo, fatigue caused me to pass out and have a seizure, after which, I could not drive for six months. Knowing fatigue puts me at risk for having another seizure, I struggle with deciding what to put on my myLifeLine "Helping Calendar" that does not seem to be too much of a stretch. Yesterday, the thought crossed my mind that I needed to show someone else how to make my green smoothies. I shuttered at the fact that I would not even have the energy to do this...but also know I have to face these facts now.
As I type this, I feel like I am letting you all in on a big secret. A secret fatigue that has me tied to my couch, too tired to play Words with Friends, much less to read a book. Right now, I am too tired to get up and refill my coffee cup, my head spinning ever so slightly. Is this what chemo tired is? Or is this something else? I am thankful that I see my doctor tomorrow where I can report my fatigue....and maybe he will have some answers?
Still, writing remains my blessing.....along with you....my readers. Below, I have included some pictures of my and Madison yesterday. These moments of joy are what I am truly hanging onto...and Madison's face says it all.