It’s Been A While

I haven’t written for a while, and I think there’s a whole host of reasons for the delay and that will be the focus of today’s post.

I often write when I have shit to sort out, and I think it comes across as melancholy and deep, and people worry about me.  I don’t want people worrying about me.  Being a burden is one of the last things I want. While I am open to being helped and being dependent on others, I hate that this illness is causing other people to be sad.  But I don’t want to stop writing about it. I think the reading and writing is one way to share the reality and my very real lack of anxiety about the end of life.  However, the anxiety about getting through now and the end of life, whenever that should occur, is very, very real.  But more on that later.

So when I am not writing about my journey with cancer, I want people to know I am just living life.  It is a very different life due to treatments and the accompanying side effects of headaches and fatigue.  During the work week, I have about one waking hour where I eat dinner and get stuff ready for the next day before crashing into bed for my needed 8+ hours of sleep and starting it all over again.  But the time at work is the most invigorating that I have.  I love the people I work with. Their minds are sharp and hearts are full.  We solve problems big and small.  Most of all, I get to plan for a future while at work.  We pretend that I am guaranteed to be a part of that future, and I appreciate people playing along with that guarantee. Regardless, the work I do now will be a part of someone’s future, and hopefully for the better.

I am not ready to give up my work, but I also realize I cannot sustain the needed 7:30 – 4:30 (or later) plus a 40-minute commute on each end.  It is this dilemma that has me playing out options like a rubrics cube:  find a place closer to Quincy so the commute is shorter and the possibility of a “lay down” in the middle of the day is an option.  But that brings financial implications, and the idea of having yet a third house where some of my personal crap might be is more than a chemo-brained 51-year-old can imagine.

Part of the puzzle is having the results of my next PET scan which I think should be in the next two weeks.  Knowing how I am responding to the chemo will help know what we can do next with treatments.  There is hope that the mets have shrunk considerably, and we can cut back on the dose of the taxol that is causing the fatigue.  Let’s talk about the fatigue for a moment.  This is something like I have never experienced.  It comes in waves with the first one hitting about 7 hours after I wake up (unfortunately with a 5:30 wake up time, I get hit about 12:30 in the afternoon).  It starts with a chemical taste in the back of my throat along with a headache and muscle aches in my abs and thighs.   My head becomes thick and I lose focus.  If there is a lot of noise or overlapping conversations, I want to scream to everyone to shut up.  There is a medicine I take that will push the wave back out for about two hours, and then it comes back with a vengeance and no relief until I go to sleep.  If you are following the timeline, I really am no good after 2:30 p.m.  I have tried the solutions people have proposed:  eat, drink caffeine…  meditate… I drink tons of water,  but this monster is like a life-sucking force that sated only by the restoration of sleep.  Thankfully, I have new med that helps that sleep come in a timely fashion so the monster’s sibling:  “uncontrollable thoughts that won’t let me sleep” don’t deprive me of that restoration.  Yes, cutting back on the taxol would be a good thing for QOL (that is cancer talk for Quality of Life).

If the mets haven’t shrunk considerably, that also lets me know that work probably won’t be in my future as long as I would like.  Instead, I will need to look at additional medicines and, potentially, not the longevity I would want, which means I might make different choices with my time.

So don’t worry about me. I am fatigued but happy.  Christmas was wonderful, thrilling, and exhausting.  But since then I have had some quiet days to think, walk, and share time with my wonderful husband.   I have called and set up time with a palliative care counselor who can help me think through these big decisions, and I have wonderful friends who help my QOL immensely.  And, look, I had time to write.


11 thoughts on “It’s Been A While

  1. You are in my prayers every night, Amy. I hope that you are indeed finding some peace in the midst of this epic battle you are fighting. ❤️

  2. Love your openness and willingness to share. Pray for you and Lisa daily. Keep on doing what you love and living in the moment. Love you friend may you have the best QOL ever.

  3. Thank you for writing! Your words are powerful (even if you feel fatigued). You are out of luck about people that worry about you. It is the price of being loved. But, instead of worry, I like to think of it as sending you love, and hope, and energy – every day.

  4. Amy, thanks for sharing with such transparency. I appreciate you and your willingness to just live life as best you can. It’s weird to hear you talk about planning for a future you might not be a part of, but still appreciating that you will positively impact people down the line. I think that’s something that we all should focus on, whether we are battling cancer or not. It’s a good reminder to always be looking to make a difference and have a positive influence on others. God bless you, lady! You are amazing! Sending prayers your way! Love ya!

  5. Thank you for sharing your story with us, like many others, I think of you often; nearly every day.

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