chemo fog

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   BeckyAposted 14 years ago

   I prefer the term "chemo fog" to "chemo brain" - just a personal thing, but I felt lost in the fog for a long time after my chemotherapy. 
   
   I was diagnosed with a stage IIIc endometriod adenocarcinoma (ovarian cancer) in November 2002.  It started out as an appendectomy, but the surgeon saw the cancer and that started my roller-coaster ride!  I had a second surgery five weeks and one day after the first.  OUCH!
   
   After the surgeries, I had a full 28 day course of radiation, followed by a "boost" - a really high-powered blast of radiation, then six rounds of three chemical chemotherapy.  The chemo was experimental then, but standard now because it works!
   
   I had the worst time with my memory for years after that.  I could not tell you who I had talked to ten minutes ago.  The short-term memory was gone.  One joke I liked was, "I have a photographic memory - I just don't have same day service!"
   
   Middle and long term memory didn't suffer so much, just immediate short term memory.  I was so frustrated!  I had to check with my son or boyfriend to see if I had taken my meds or if we had had dinner yet.  It made me feel like an idiot. 
   
   After about a year, the memory started getting better, and now it is a lot better, but I still have those "moments" when I feel so helpless.  Like when I go to the refrigerator and open the door and have NO idea why I am standing there.  This is frustrating! 
   
   But, I also have a motto:  If I am here to whine about it, I am doing okay!
   
   I have to tell myself this a lot some days, but not as often as before, so it really does get better.  Word puzzles have helped me a little, with focus as much as anything else.  It was a good feeling to find I could work a puzzle.  From the inside I would have sworn I had completely lost the ability to think, although other people said it didn't show.
   
   I never found much in the way of support.  This forum has so many postings from fellow-survivors, I feel like I finally found someone who understands!  I had called the Cancer Association once, who said they would match me up with someone else who had survived the same cancer at the same stage.  They couldn't match me up because people just didn't survive that cancer!  Not much of a help 
   
   Anyhoo - those who are suffering, and those who care for someone who is suffering, you are in my prayers.  Thank you for any feedback.  I am new to this.

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      Deborah Sextonposted 14 years agoin reply to this

      __________________
      I'm glad you made it.
      My mother lost her battle to lymphoma (cancer) after going through chemo for a year. She was always sick and so skinny I saw every bone in her body.
      I still love her with all my heart.
      
      Congratulations.

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      1. 52

         BeckyAposted 14 years agoin reply to this

         I am so sorry for your loss.  Two years before I had cancer my mom died from colon cancer and she also had chemo for a year.  At the time there was not much to be done about the nausea.  She literally starved to death, even though we fed her as much as she would eat and added Boost milkshakes.  Nothing worked.  She looked like a Holocaust victim, skin and bones. 
         
         I have since lost my dad to diabetes and heart failure.  It's never easy to lose a loved one, but I think of them as my personal guardian angels and that helps a little.

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2. 52

   snoweposted 14 years ago

   Hi,
   This could be a serious situation at all.
   So,in your situation i really feel lucky that i never have that illness but i assure you that i can help you through prayer to our Almighty God.That's the only thing i can assure you for now..
   GOD BLESS.

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   1. 52

      BeckyAposted 14 years agoin reply to this

      Thank you for your prayers.  I had so many churches in my hometown praying for me that I couldn't even count them!  I believe that is why I made it.

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3. 60

   joleenruffinposted 14 years ago

   Becky, I had the worst chemotherapy fog when I was going through my treatment. It got so bad that sometimes I had trouble even talking. One morning I woke up and got on my knees and prayed. I felt that fog just lift right at that moment. 2 1/2 years later I don't think my brain functions as it did before the chemotherapy but significantly better than when I started the treatment.

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   1. 52

      BeckyAposted 14 years agoin reply to this

      Most days I do okay now - I am even going to college onlline!  I still have rough times, usually when I am tired or upset.  Prayer is the best medicine I know of.  One of my doctors had a sign in his office that said, "Doctors treat, but God heals."  I love it!  When I was in the hospital everyone from nurses to the voluteer that brought books around offered to pray for me.  I got a chance to see just how many people deeply believe - what a comfort!  Thank you for your comment.  I hope the fog continues to lift with time.

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4. 59

   h.a.borcichposted 14 years ago

   Congrats on your survivorhood!!!!
   
   Chemo fog is frustrating, I know. I had advanced bladder cancer - T3b - and have joined the ranks of suprise survivors too!
   I agree the word games helped. During chemo I was having a good day when I made 3 letter words on scrabble. It has been 3 years but I still have those moments when I cannot remember how to turn on the cd player. It is real.
   Reasearch "late effects" for whatever chemo agents you were given. I did gemzar and cisplatin and had neuropathy, hearing loss, chemo fog and some nerve damage. Drs don't always know or tell us the late effects (effects that don't always appear immeadiately or they never go away). There may not be much published but I found enough info to understand what I was going through.
   Glad you made it!!!! Holly

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      BeckyAposted 14 years agoin reply to this

      One thing I do struggle with is overwhelming fatigue, just often enough to interfere with living (work, housekeeping, being with my family).  I looked up fatigue/radiation/chemotherapy online and found that those who receive large doses of radiation can experience fatigue for up to 17 years, longer if chemo was done or multiple surgeries.  So, I had all of that and I guess I will just be tired forever.
      
      Luckily, I found a school online, so I am trying to learn something I can do from home and work around "those" days. 
      
      The neuropathy is worst in my hands and feet.  For a long time I would suddenly lose feeling in my feet.  Ever try to walk when you can't feel the floor?? 
      
      The most annoying is the permanent bug-spray flavor in my mouth.  The only thing that has helped is sugar-free butterscotch candies, but then I found out that sugar-free is not calorie-free, so I had to cut that out.
      
      Congrats on making it!!  Hang in there! 

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   JBMarcus1posted 14 years ago

   I am running the Boston Marathon for all those who have or had Cancer.
   
   If you would like me to run in honor or memory of someone please let me know.
   
   NO DONATION REQUIRED
   
   www.runDFMC.org/2011/jeffreym

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      BeckyAposted 14 years agoin reply to this

      God bless you!  You could run for my mom, Joyce.  Thank you!!

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6. 48

   JBMarcus1posted 14 years ago

   Sure -
   
   Just send me an email with her info
   
   For all those who passed away
   Name - First & last OR Fist and Last Initial
   Yr Passed Away
   Type of Cancer
   
   For all those Fighting Cancer
   Name - First & last OR First and Last Initial
   type of Cancer
   
   jbmarcus79@gmail.com
   
   website = RUNdfmc.org/2011/jeffreym

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7. 59

   PageCposted 14 years ago

   So glad you are doing better --- I love your spirit!
   
   Just a thought -- there is some evidence that meditation can help improve memory, i think the study was for older adults. Your posting made me wonder if it might help with chemo fog also.
   
   Has anyone tried that?

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8. 59

   top-bannanaposted 14 years ago

   following on from the most recent hub, actually read drinking apple juice can help improve memory.  Some trials of Alzheimers have proved that it helps.  Don't know if it will work here but may be worth a try.
   
   By the way congrats on the surviving.  We just found out today my mum has the all clear after 6 months of chemo so will pass on your info of the chemo fog.

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