Brain don’t fail me now (aka Chemo Brain)

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Catchy title for today’s blog eh?  I will actually talk more about Chemo Brain after I give an update on dad’s condition.

An Infectious Disease Specialist came to see dad today.  He asked a bunch of questions about his recent history and about things going on at home.  He concluded that had dad been on a longer course of the antibiotic he was taking when he left the hospital last time, he might not have had a recurrence of pneumonia.  He said that was no guarantee though and that it is likely his pneumonia is being caused by a partial blockage of the airway that is not allowing his lungs to expel harmful bacteria that an otherwise healthy person would be able to through coughing.  He was saying this was likely what is going on because dad isn’t coughing up any phlegm (which also makes it difficult for the doctors to determine the organisms causing the pneumonia).  They are going to continue to pump him full of a half a dozen antibiotics, use breathing therapy and keep him on oxygen until he is well enough to leave.  He will have to continue with antibiotics and the rest of the regimen at home.  We do not have an expected discharge date yet.  Very unlikely it will be tomorrow, but perhaps Sunday.  We shall have to wait and see.  The airway (just somewhere in the lungs like the bronchi perhaps) blockage, the doctor was guessing, is either due to tumor growth or swelling from radiation.  Of course we hope it’s the later, as the first possibility would mean the cancer is not gone.  We still won’t know for sure until next month when they are able to perform a PET scan without false positives due to residual radiation.

So that is dad’s update.  Now lets shift focus over to mom.  Mom had her third good day in a row and I continue to be pleased with that.  This morning she got ready in record time to head out for the day.  The plan was (and we were able to keep it) to go to the YMCA so she could get her social workout done while I got my cardio groove on.  She was so happy to see the gang there and they were just as happy to see her.  They were sad that my dad couldn’t make it, but in time he will get back there.  She got to see a couple of the people with whom she really really enjoys spending time.  She found out that one of the guys in that social circle had passed away earlier this week.  His name was George and he was quite a character.  He was an author, a stun horse rider in the movies and a teacher among other professions.  He always had good stories and always ended his visit with the gang by saying, “Well, I think its time for me to get wet.”  Meaning that he was going to hope into the jacuzzi.  He was a real neat guy and will be sorely missed. Rest in peace George.

After the Y, we headed over to the hospital to visit with dad for a while.  After about a half hour there, mom was getting pretty hungry so she and Andrew went to the cafeteria while I headed out to go pick up my prescription.  Shortly after I got back to the hospital, my older brother showed up and we all stayed there for a while chatting and taking turns checking how low dad’s oxygen saturation reading was when the alarm would go off.  Honestly, I don’t know how people stand being in the hospital with those alarms constantly going off.  This number is low or that number is high or the IV machine is out of whatever cocktail they have pumping in you.  It is maddening.  It seems as though the nurses are numb to the alarms and the alarms just keep getting louder and more annoying until a nurse deals with it.

I could see that mom was starting to fade and we still had one more stop to make at Costco before getting her home so I suggested we head out.  I went ahead to get the car and pull it around front to pick up mom while Andrew and my older brother walked mom down from dad’s room.  We headed over to Costco to fill up on gas and then go inside for milk, wild bird seed and a pallet of toilet paper.  Here is the thing with Costco.  The store is so huge that mom gets tired just going from the door to the checkout counters, let alone walking around the store.  So when we go there, I try to get her to stay up by the front while I run off and get the shopping done.  Since we only needed three items and I knew exactly where they were, I could run over get the items and be back in no time.  It only took me a few minutes to get back to the front where she and Andrew were waiting.  Unfortunately I had gotten the wrong kind of toilet paper.  There is only three kinds there and I picked the wrong one.  Mom couldn’t tell me which was the right one (another reference to Chemo Brain) and she said let’s go back to get the right kind. Ughhh.. this is exactly what I wanted to avoid.  The toilet paper is clear against the back wall of this Costco.  It took us a half hour to get the right kind and check out.  By then, mom was completely pooped.  Oh well, I suppose there are worse things in life.

There is this thing that many people going through chemotherapy experience called Chemo Brain or Chemo Fog.  Until just a few years ago, it was thought to be something patients were making up and that it wasn’t a real side effect of chemotherapy.  Since it is fairly recent that oncologists have recognized it as an actual thing, there isn’t much in the way of studies to help identify what causes it or what to do about it.  So the only treatment for it is to learn to live with it.  Each person reacts to chemo differently and there are many types of chemo drugs and chemo drug cocktails used in chemotherapy, so for a given person it is hard to say if they will experience this and if so how long will it last.  It is a chemotherapy-related cognitive impairment or cognitive dysfunction.  According to the Mayo Clinic Website on chemo brain, its symptoms include confusion, being unusually disorganized, difficulty concentrating, short-term memory problems among others.  This is definitely what mom (and dad to a lesser extent) are experiencing.  It seems to be hitting mom pretty hard.  She confuses words sometimes, makes up new words in some cases, cannot remember what happened yesterday very well, is ‘remembering’ things that didn’t really happen, etc.

She is well aware this is happening, especially when she makes up a new word like flanket.  She knew that word was not a real work and wasn’t quite sure why she said it.  By the way, the word she meant to say was blanket.  It is a bit frustrating for her.  As I had posted a while back in my tips to communicating with my parents, I try not to finish her sentences.  I also have to avoid the urge to ‘help’ her guess what she is thinking of unless I am absolutely sure I know it.  For instance, she was telling me that some friends were coming by tomorrow to bring over some food.  She was trying to find the right words to describe what they were bringing over.  As she was trying to describe it, I was spitting out words I thought she was trying to say.  None of them were correct and it was just irritating her.  I realized what I was doing and just said to her that it will come to her shortly.  She finally was able to recall the correct words, but by then she was so irritated it didn’t really matter anymore.  This chemo brain thing can be quite frustrating.   For mom it shows up in different ways and has progressively gotten worse.  I really hope this is as bad as it will get because it is very frustrating for her.  Especially when she knows she is having good days except for this one aspect.  Dad has it as well, but his is mainly just the inability to focus on things and occasionally having trouble with words.  However he is much more easily annoyed so when he can’t think of the right work it is a big ordeal.

So for any of you readers who may have to go through chemo and/or radiation personally or with people you know, be aware that this is a possible side effect of the treatment.  That you need to remember to be patient and encouraging.  That when the effect is being directing in some way towards you that you try to not be offended.  It sometimes helps to deflect the conversation to something else, but be careful as it can backfire and lead to more confusion.  Mom and dad were having a conversation today and dad switched topics.  The rest of us knew he has switched topics, but mom didn’t pick up on it and that led to a ten minute conversation just to get it clear that there were two different topics that had been discussed.  It can be frustrating and upsetting for those interacting with someone who is experiencing chemo brain.  It is kind of scary when they ask the same question more than once or when they make up something that didn’t really happen and you have to figure out a way to explain that you have no clue what they are talking about.  Mom was asking me something today and I could not figure out what she was talking about.  Finally I realized it was nothing and that she was just ‘remember’ something that didn’t happen.  Then came the awkward task of telling her that whatever she was thinking about didn’t really happen.  There is also the choice to let it go.  I experienced that today as well.  I told mom I needed to go pickup my prescription.  She said, “Oh that’s right.”  However, I had not told her before so she never knew about it as her “Oh that’s right” comment suggested.  I chose to just let that one go and pretend that I had told her.

Well I think that sums up the day.  We shall see what fun stuff tomorrow brings!