Life at 40. . . mg

I’m 33 years old but since starting 40 mg of carbozantinib (about 5 wks ago). . . My age doesn’t matter. The theme of my every day= TIRED. The fatigue, not as disabling as the 10 days of 60mg was but disruptive to say the least. I have had many days of pajamas on the coach, too much tv, bed, naps, and the guilt, irritability, and feelings of helplessness to go with it. Struggling to make it through the day giving my boys what they need, trying to make it out of the house for some vitamin D, and yes just to maintain an exceptable shower schedule, at times. Accepting help. Learning to ask for help. Learning how to be less than i’d like, meaning exisist in a body that doesn’t allow me to do as I am use to do, not even half of what I am used to doing. Missing out on so much. Faking it so I could make it.

Luckily, I have an amazing family who have helped me through and some close friends to lean on and those who were able to stop by and be there during times when I needed physical help with our children, laundry, or distraction and those who wanted to be there but were unable but let me know their intentions. Those checking in on a personal level, it has all helped!

Today, I write this from the perspective of a 20mg day. I wrote my experiences in the past tense hoping they are indeed just an unpleasant memory and a life challenge that’s behind me and my family. Today was better. “I was half as tired.” I did things. I rallied to leave the house. I did it. I had energy. I came home and still rallied to do more. I resisted sitting down and scrubbed the ring of soap scum from our tub. I cleaned. Tired but able to doit not just wishing I could find the energy to do so and sucuming to the ever present fatigue that 40 and 60 brought. Nope today was life on 20mg of cabo. A whole day of having myself back.

Out of cabo prison. I hope it’s not just a “good day” like I’ve had before (on 40mg) but the start of life at 20. . . mg. Life as me again. I recognized ME again today. All day. I felt like me. All day. That is precious and worth blogging about. Before I couldn’t find words in my low energy existance to have anything to say about it. It paralyzed me many days. During the times I felt better, well posting ablog did not rate.

I am hopeful today. I am really hopeful that the next 2.5 weeks before repeating scans will be enjoyable ones. Days where I migh
Be tired but I still feel like me. Instead of some horrible, sluggish, irritable, beat up version of me that was drowning in horrible chemo fatigue. Please let it be true! Please say that I have truly broken free from that jail and that today was not just coincidence.

Well that’s a piece of the story. No time nor energy to share more for now. All I know is that if you pray, for the first time, i’d like to request your prayers. I hope they can be intentioned with my health and the well-being of my family in mind, particularly over the next few weeks as I take this medication and wait to undergo new scans. Bone scans, PET/CT scans, & CAT scans all to let me know not only if this experimental drug is working but if my cancer is stable, shrinking, or growing & progressing.

Life at 40mg was horrible. Here’s to better days with less side-effects and cheers to all those who helped us get through the past several wks in particular.

That’s my cabozantinib support thank yous and my request for your prayers–not only for my health but for strength to face the results of my scans and to make & endure treatment decisions that will follow.

I’ll be back @ the end of Oct with an update, if not before.
Take care,
Love * Peace * Good Health ~JLSM