Post Chemo Issues Still Arise, Even After 6 Months Post-Treatment

There is a little known secret that is well… not well-known.  After treatment is done, side effects can suddenly show up and/or worsen.  How is this fair?  I accept that during treatment my body should feel its worse.  After treatment rays of sunlight should hit my body with a wonderful aura and I will suddenly be back to normal (A.K.A the Beauty and the Beast Recovery.. just in my case for a woman not a man).

However my neuropathy is still annoying me and making my day-to-day life more difficult.  Typing is still a chore.  I mistype so much.  I actually hate typing any more.  I suspect that people tire of my complaints on this but it does make my life frustrating and difficult. Buttons, zippers, ketchup packages… They all pose a frustration that I avoid whenever I can.

However on Thursday night a new thing showed.  I was at the first meeting for my cancer study and was chatting with another gal who was there.  We started talking about how chemo fog was annoying during treatment.  I talked about how I couldn’t do basic math after 2 treatments (doing an engineering based job.. that was difficult to swallow).  The study leader came in and talked to us about how they have started doing studies on chemo fog/chemo brain.  Apparently a correlation between people who struggled with the cold sensitivity, neuropathy and chemo fog have been found.  It has something to do with those of us that did struggle with it, that the result was the brain remapped after treatment.  The mapping showed some basic puzzle activities and thoughts were being processed in different parts of the brain post treatment.  Those that struggled with these nerve based issues also had a greater likelihood of nerve damage remaining afterwards.

For all of my treatment I had not heard anything like this.  It was shocking.  And to be honest I have been distracted by the neuropathy frustration.  So on Friday I started processing it and it wasn’t a pretty sight.  It was a pretty devastating thing.  I wrote down things that are mentally different from before treatment and after treatment.  Here’s the list:

  1. Happier
  2. Can’t multitask as well
  3. Easily distracted… Squirrel!
  4. Difficult to problem solve
  5. Feels like moving through sludge when thinking a lot
  6. Can’t seem to read for fun like I used to
  7. Math takes a lot more work then it used to
  8. Terrible memory.  I have to write everything down, however I lose the list just as frequently
  9. Struggle to manage my day-to-day “To Do’s” … most just never happen
  10. Attention to detail is almost non-existent
  11. Mental things exhaust me
  12. Learning new mental things just feels like a hurdle I do not want to deal with

When I looked at this list, my jaw dropped.  I then looked up about chemo fog/brain.  http://www.cancercare.org/publications/72-cognitive_problems_after_chemotherapy  OMG!!!

To say I broke down would be a mild understatement.  My brain, the one thing about me that I was most proud of is non-existent.  It isn’t that it just disappeared last week.  It is that it disappeared during treatment and hasn’t returned.  6 months after my last treatment and I see no signs of things getting better.  Anything that fought against the stuff listed above, I just avoid.  I stopped reading for leisure.  I stopped trying to learn new things that were complex.  Tasks at work that were too difficult I pushed off till I couldn’t any more.

But the good news is that I am happier.  And that is a wonderful thing.  The brain and the neuropathy excluded I am so very much happier.  It is like I can see the forest instead of the trees, I can actually see the rainbow and not the light waves behind it.

However I want both.  I want my brain and nerve endings, and I want to be happy.  I do not think they need t exclude each other.  The one thing I took pride in may never return and that is a devastating thought.  That is a horrible, terrible thought.  And honestly, it puts a cloud over so much.

This past weekend was the Steampunk World’s Fair with Kiddo and The Knight.  However, internally I was battling with this.  It made the weekend less than it should have been.  I didn’t share this problem with them because I didn’t want it troubling them.  But I also know I wasn’t completely me.  I tried to  compartmentalize what was going on, however I am sure I didn’t do a perfect job.

And now I am sitting at my desk wondering how to work with this new-found difficulty and I do not know.  On Friday I spoke with a counselor at Cancer Cares and they helped a good bit at putting things into perspective.  However I feel disabled now.  I feel like a piece of me is missing and won’t come back.  I feel like those that enjoyed my brain before will like me less for being less.  I feel like I am a different person.

And as legitment or illegitament those feelings are, they are still there.  They are still plaguing my mind.  And there is no answer for what to do.  Is this my “New Normal’?  Will this change in time?  I do not know.  I am almost afraid to get my hopes up.

Sorry to end this on a cloudy note… I just do not know how to see the rays of sunlight yet for this one….

Advertisements

Tristan – You Warm My Heart

Tristan is my darling lesson horse.  I call him “My Grumpy Old ManHorse”.  He tries to nip when you tighten the girth.  He tries to nip when you say hi.  He is a “dominant” horse and unless he feels that you top him, he is going to put you in your place.

Tristan

He is a fairly easy ride — at first, thu being a lesson horse.  When you are just learning, he gives you leeway.  He doesn’t try to make you work for the lesson.  He gives you this false sense of success.  As I am starting to progress, he is making me work for leadership.  He tries to pull the reigns out of my hands when I am posting.  He tries to avoid obstacles.  He tries to shorten his corners.  He randomly decides he wants to stop.  He is just trying to take the easy way.

My instructor, A, is telling me what I need to work on.  And for the past few lessons I have been working on it.  He and I have been having the battle of wills.

For ground work I have been watching videos on suggestions and I have found a guy I like his POV.  Tristan and I are doing great on groundwork now.  He doesn’t go for me any more.  He doesn’t even pin his ears at me any more.  I listen to his body language and express my expectations in a way he can understand.

He and I battled a bit last night on his riding stuff and I WON!  Okay I feel like a little kid, but about 5 minutes in we were making progress.  No more reign pulling.  I am communicating before trot polls so he is doing the right thing.  I know my communication was off, which is completely my fault.  But this communication thing is really the most important.  If he does something I didn’t want, it is my fault because I didn’t express myself properly.  This has led me to be very conscious of what I do with all of my body.

But the rewarding part was the end.  While I was waiting for kiddo to bring Calli out for the walk back to the barn after lesson.  He and I were standing side by side.  He got his carrot treats, after which he usually ignores my existence (“silly human has no food, I do not need her now”).  Instead he nuzzled me on the shoulder and then on my face.  I got my first face kiss from Tristan.  I didn’t flinch as I wasn’t afraid of him biting me, I was just in shock and then awe.  He and I have built a relationship of respect.  I can not think of something more rewarding than to have him nuzzle-kiss me.

Work Frustration – “woman in a man’s job”

I have been working a stereotypically “man’s job” for over 13 years now.  I am used to having to wear coveralls and uniforms that are cut for men, not a curvy woman.  I am used to having to be “one of the guys”.  I am used to being the only female in meetings.  It is just part of the career path I have chosen.

Yesterday just frustrated me horribly.  I do not know why this one thing frustrated me so much when it is so much smaller than all the others.

I am required to have full leather steel toed shoes when working in the plant.  I needed to have them immediately as my previous shoes had been damaged at work.

When I went to pick out my new shoes from the company selected store, they had no female shoes that 1) met my company’s safety requirements and 2) were waterproof boots.  My company’s requirements aren’t that stiff, and even if you threw that out, there was only one pair of shoes that were waterproof boots.  There were walls and walls of men’s boots that would have worked.

But men’s shoes are cut differently.  I have been forced to get men’s boots before.  They don’t fit well, they are uncomfortable, the soles are so very unpliable.  And I need to be able to walk and work in these all days.

I do work as a safety person.  I know what requirements these shoes need to meet.  What I am asking for is not unreasonable.  However, they just aren’t made for women.  I am frustrated at being a woman trying to work in her selected job safely.  I am frustrated at uniforms that don’t allow for hips or a bust without becoming massively oversized in other areas.  I am tired of doing a penguin walk in uniforms to try to get them to fit right.

This isn’t an issue of equal pay, equal ladder climbing or any of the like.  It is the small things that make a difference in day-to-day working.  And maybe one day it will be the standard.  One can hope….