Sandbox.

Last Tuesday, October 30th was my last treatment of Darzalex, for 13 days. Last Wednesday, October 31st was my last day of Kyprolis.   Had Zometa drip also.  Dex was taken on the 30th and will continue to be taken every Tuesday, treatment or not.  Thursday didn't feel too bad.  Friday was my normal fatigued day but had some things to do so push it aside as best as I could.  Saturday during the day showed some fatigue but felt better.  Was able to do dinner and "dimes" with the Domer's and Tremaines.  Fun times.  Sunday was another fatigued day.  Monday, I spent the better part of the day with Mom.  Tuesday, Sandy and I did a bit of shopping and I mean I bit.  Got to Staples.  Lunch was great though.  Then fatigue hit again.  Sandy and Denny have been in FL the last 3 weeks.  Sorry they had to be here during treatment weeks.  But that's pretty much our life anymore.  Here for a bit of my 13 days off but not my feel real good days.  They go home on Friday.  Then my brother Rick, my niece Marcy and great niece Aubrey come for a 3 day visit.  Excited to see them and especially my newest great niece.  Will have a few more days off and then on the 13th, Darzalex is back.  But good thing is I will not have another treatment of that until December. Kyprolis will continue.  Dex will continue.

Here are a few things I have been wanting to post about for some time now.  Things that make up my life that not everyone understands.  My meds and how they affect me, fatigued, chemo brain.  I have been reading articles on them and they are real.  I get so fatigued at the weirdest times.  And it doesn't always happen during treatment weeks.  This may be boring to read but something else I need to write about our life with Multiple Myeloma.

Fatigue can affect the quality of life for years according to an article I recently read.  Continuing on, there are many factors that can cause fatigue, stress, anemia, dehydration, sleep disorders, diet, depression.  Physical activity can help reduce fatigue like yoga.  Fatigue ranks high on the list of most cancer complaints.  My personal fatigue seems to be worse on Fridays of my treatments.  But it does hit me anytime after that when it wants to.  And when it hits, I am done.  Can't go anymore.  So I just go lay down for an hour or two.  Helps.  Try to work through some of those days but doesn't always cooperate.  Our life with Multiple Myeloma.

My meds cause several side effects too.  These various drugs make me up, make me down, make me tired, make me hyper, make angry at things that are very minute, make me talk a lot (just ask Bill or Michelle), make me cry alone, make me snap at Bill and others, keep me up half the night, make my fingers and feet numb, make me drop things, make me feel like I am walking on golf balls, make me have spasms in my toes, fingers and calves.  Just to mention a few.  These are also things that not everyone can understand.  Our life with Multiple Myeloma.

I get so frustrated when I am trying to think of a word and can't.  Frustrated when I can't recall details.  Frustrated when I can't remember something from the past or recent.  I have always had a   pretty good memory of things in the past.  But boy, not so much anymore.  I know some of you say that age is a factor but I am not buying that.  I know it's chemo brain and I know this is real.  Articles say this type of cognitive impairment.  Chemo brain or chemo fog can start during or just after cancer treatment.  Common systems include forgetfulness, difficulty concentrating or recall details or words and trouble multitasking.  These cognitive challenges that arise during a cancer journey can be frustrating.  Researchers are aiming to find out about the cause and treatment of chemo brain.  I don't have all the systems of the impairments, thank God.  My most common ones that chemo brain is causing are my not being to remember words when I am speaking, not remembering things from the past and not being able to recall details (like a recipe I have used for years).  Our life with Multiple Myeloma.

Just wanted to put this out there for you all to see and try to understand what goes on in our life with Multiple Myeloma.  Not seeking sympathy.   Just want you to understand if you have been the brunt of some of my moods etc.  Not the same me of several years ago and not the same me I was even six months ago.  Life happens.  Myeloma changes you through meds and side effects. So glad I have my Myeloma support group.  They have been there, some still there, done that and understand.  Our life with Multiple Myeloma.

Our support group leader, Ken, is a great guy.  Along with Arlene, he plans for our meetings speakers, has water and tea along with our sponsored meals, has thank you, birthday, sympathy cards available for signatures each week as needed, keeps us rolling along to get us cleaned up and out of the church at our scheduled time.  All this and more each month.  And you know he and Arlene has duped me as another co-chair.  Talking with Ken today to prepare for my first meeting to chair, he told me something one of his bosses said a while back. This boss did not micro manage and was a good boss to work for as long as you were getting your work done.  But if that boss was planning something and someone was pushing in to those plans that wasn't wanted at the time, the boss would say, " I am not going to let someone get in to my sandbox!"  Don't need it or you.  Makes sense to me.  How about you??  Love my support group and my co-chairs.

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Trust me, my chemo brain, fatigue and side effects are more frustrating to me than they are to you.