Hello from the chemo suite - part deux

I know I'm bad for not updating this more often... but I figure if I'm attached to an IV for 3 hours... I have no excuse not to use some of that time to type... so here we are. 

I have been really struggling with fatigue over the past 6 weeks and my ability to run took a nose dive.  All of a sudden I couldn't get through 5 km even at a really slow pace; a 30 min walk landed me on the couch for the day, unable to drive safely to pick up the kids from school.  I finally realized that it seemed to line up with the shots I was taking for my white blood cells.  I had fatigue, muscle soreness and really sore hips.  I kept attributing it to running... but apparently kicking your bone marrow into high gear is exhausting.  Sooo... our plan is to adjust some chemo dosing to avoid the need for the Neupogen shots and see how that goes.  Knowing that it was a side effect and not that I was inherently deteriorating that fast was a huge relief.

I'm also sitting here in the chemo suite right now trying make sure I'm not anxious because my blood pressure is reading high.  I've never had high BP... I was always a 110/70 kinda girl : )  But one of these drugs I'm getting can do this... which is aggravating.   

While it was good to finally see my Oncologist in person yesterday (first time since Covid started) it was a bit of a morbid reminder.  When we are talking about strategies and options that "won't change life expectancy, according to the research" or talking about "optimizing quality of life for as long as we can" drives home the ultimate course of this.  On the plus side, my blood work was completely normal and my CEA (tumor marker) is continuing to drop... so all good things.  My doctor did remind me that he has/had a patient who was on this chemo for 4 years... so I'm just going to try and continue to take this one chemo at a time.  We'll scan again in the next 4-6 weeks and see where things stand.

On the home front... kids are back at school.  Sean started middle school this year and has managed the transition like a champ.  In true Sean form he still needed to test the boundaries of the new routine and tried to pull a sick day last week.  This prompted 6 hours of driving around the city trying to find a covid testing centre that would take us, and elicited some pretty major anxiety for him (he knows the swab is awful).  So we had a frank discussion that if he needs a mental health day, lets have that conversation, instead of putting everyone through the covid ordeal.  Two days later, he needed to test the mental health day option.  In all honesty he was struggling.  I've rarely seen him tearful and needing hugs the way he was last week, but being the boy he is, he wouldn't talk about it with me.  The school has been great and made some plans for him if he's feeling anxious at school, and provided some good supports.  He came home the other day and Ian told him "you know I'm here if you ever want to talk".  Sean replied with "you have NO IDEA how many people have said that to me today Dad" complete with pre-teen eye roll LOL.

I will leave it there for now.  Here's a photo I took this past weekend.  I made it up to the cottage for one last weekend this year and had a great sun-rise run.  This was the run that made me realize I still had it and the shots were to blame.  This was the view from the 3 km mark in my 6km run. 


  

Comments

  1. Don COctober 1, 2020 at 7:59 AM

    It is so great that you put together the fatigue and aches with the shots: brilliant! Thanks for the update: love to all.

    ReplyDelete

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