Most of us have had those times in our lives when we have so much going on that we start to become forgetful. The signs are usually things like…Where are my car keys? Oh crap, I was supposed to be at the dentist a half hour ago? I can’t find where I put the TV remote? One of my favorites is when you are asked “have you seen my glasses?” and you can see them sitting on the person’s head. Yup, been there, done that…both sides of that situation.
These are typically followed by statements like…”If I had a half a brain I’d be dangerous” or “If brains were dynamite mine couldn’t blow out a candle”. In our multitasking, always connected, fast paced lives sometimes we are just trying to do too much at the same time. And sometimes it’s chemo brain.
Nurses and doctors have warned me that a side effect of the treatments can be muddled thinking, forgetfulness and general brain lapses. Big deal, those are challenges I’ve been facing for the last 10 years. But as the treatments have progressed it’s pretty clear that the chemo does have a negative effect on your cognitive abilities. It also appears that the stress of the illness can spread the effects to the immediate care givers as well (at least that is what Pam claims).
Much like the 5 stages of grief we were initially in denial. We blamed the misplaced items, almost missed meetings, and multiple trips to the grocery store to buy the same item as just the stress of the illness and hectic nature of all the activities we needed to coordinate. The frequency made it clear it was more than that. It was time to move from denial to the next stage…anger. Situations now resulted in muttering expletives under our breath (or in some cases out loud) and blaming secret government agencies for following us around and hiding our cell phones or moving our car while we were in shopping.
Misplaced cell phones were a common occurrence and we were in the habit of using one mobile phone to call the lost one. Until the day we lost both of them. The immediate reaction was to have a friend or family member call one of the phones but of course that would require having a phone to ask them to initiate the call (we don’t have a land line). While laughing hysterically about the situation a fortuitous call from a friend allowed us to find one of them. We decided we were skipping right over the bargaining and depression stages of grief and moving right on to acceptance. That’s when we decided it was time to put the fun into our dysfunction.
First up was Grocery Store Roulette. Much like normal people we would have a list of what we needed before we headed to the store(s) but for some reason key items always seem to fall off the list (or never made it on). The goal is to bet on how many trips we will end up making before we get everything we need. Then there is the take off on Where’s Waldo that we call Where’s Cell Phone. The goal is to see who can guess/remember where they last saw the phone before running around looking for it (or calling it). This is equally fun for car keys, wallets, purses and TV remotes as well.
Keeping track of my medical stats like when was my last transfusion or what were my white blood cell counts two days ago can be a challenge with chemo brain. Often times the nurses are asking you these questions or other more personal ones like when was your last bowel movement (it can range from “so long ago I can’t remember” to “excuse me…got to go”). At first I tried to keep a folder of all the questions they might ask so I could look it up but either I couldn’t find the answer in the folder or they would ask something I had no idea they needed to know. After I fumble around for a while they would infuriatingly say “don’t worry, I can look it up in the computer”. I just want to scream “I have chemo brain, couldn’t you just have looked it up first”? Instead I’ve decided to deploy the “dumber than a rock” approach. The goal is to see how long I can keep them waiting for an answer before they give up and go to the computer. Thumbing through a folder with no relevant information in it for minutes is usually the quickest way to get them to move on but I like the approach of thinking out loud as I try to track back to an answer. Nurse…“What were your platelet counts last Tuesday and when was your last transfusion”. Me out loud…”Last Tuesday, last Tuesday. Let me see I know Monday morning I was at the Doctor’s office and Weds we were shopping at Wegmans…I had to get that special salad dressing that only Wegman’s carries, what a great store. Did you know they have one of the highest customer satisfaction ratings? So the transfusion couldn’t have been on Wed. Could have been Monday afternoon or Tuesday but I know I had something going on Monday afternoon so it was likely Tuesday. But it couldn’t have been Tuesday afternoon because I think that was the day we went for a Rita’s. Do you like Rita’s?
It usually doesn’t take too much past a discussion of Rita’s menu for them to give up and accept that I have a bad case of chemo brain and it is best if they just stopped asking questions.
Then there is Insurance Company Jeopardy. The insurance company loves to send statements that give you the answers on how much you owe but leave you guessing at what the service was that resulted in this bill. If it were on Jeopardy it would sound something like this “I’ll pick Unknown Medical Services for $500. The answer is Diagnostic lab test on 3/25.” We then have to come up with the question identifying the service provided….in this case, “What was a bone marrow biopsy?” Actually this game is much more frustrating than it is fun. I guess the fun part is nobody is getting paid till we get some answers.
Of course the fun is not just tied to chemo brain. Chemo has pretty much killed my taste buds and sense of smell. I can distinguish sweet from salty from sour but the nuances of taste are pretty much history. This leads to interesting blindfold food games like guess which flavor of ice cream you are eating or what type of fruit this is? Being neutropenic can have it’s lighter side as well. During that time I have to wear a mask when I go out in public. Sometimes people ask about it and I tell them it’s a precaution because I’ve been overseas and the CDC thinks I might have some unknown infectious disease and they don’t want me spreading it. It’s even more fun when someone is staring at you but hasn’t asked. I approach them and volunteer the info but tell them it’s probably nothing. I usually end it with a cough.
No need to ask if my brain is fried, this blog says it all. The second round of consolidation chemo ended last Sunday and as promised the effects were faster and nastier than last time. Within 5 days I had gone neutropenic (no infection fighting white blood cells) and have needed transfusions of both blood and platelets this week. Frankly, other the usual nausea, plumbing challenges and fatigue I’m actually doing pretty well. All the prayers and words of support really help.
Now if I could just find my cell phone….