Putting the Fun in Dysfunctional

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….

Life can be Messy

Actually I should have said “life IS messy”.    I think we all know that whatever your life is today,  it will not stay the same.  If things are not going well there is a good chance they will get better.  If things are going great, it’s likely you will face some bumps in the road in the future.   The problem for most of us is that we plan around where we are today and extrapolate it into the future.   I love this quote from Allen Saunders “Life is what happens to you while you’re busy making other plans”.

 That was certainly the case for me.  I was busy training for a marathon goal I’d been planning for 10 years, working through the integration of the company post its acquisition, exploring options for my next career opportunity, and awaiting the arrival of two new grand babies and planning out visits to spend time with them.  Nowhere in my plans was getting sick and certainly not a disease that would put my entire life on hold and scramble all my plans.   The thing is, at my age I’ve gotten use to facing bumps in the road, like maybe an injury that gets in the way of running, or maybe a missed career opportunity.   But scrambling everything all at once is not a bump, it’s more like falling off a cliff.

What’s interesting, once you hit bottom and get over the shock and disappointment of the end of your well laid plans, is you have a clean slate for developing all new plans.  Granted, much of what you plan around may be short term and out of your control, like making it through a single day, or that next transfusion, chemo treatment, or bone marrow biopsy.   But there is also time to do the things you typically don’t get to when you are busy with life plans, like reconnecting with friends and getting more involved with your family’s lives and thinking more about what is really important.     I think Tim McGraw sums it up nicely in his song “Live like you are dying”

And I loved deeper
And I spoke sweeter
And I gave forgiveness I'd been denyin'

This last weekend I got to see all my children, no small feat given they are spread all over the country and have very busy lives.  Equally important I got to hold and play with my two new grandchildren…one of them for the first time.   There is nothing like holding a new born to bring you a sense of peace.  For a small period of time the rest of the world disappears and it’s just you making a fool out of yourself talking baby talk and making funny noises (and not caring a lick what you look like).  It is also a huge motivation to fight to see them grow up and to be there for the big events in their lives. 

 No question that I live more in the moment these days but if you tend to be an optimist (and I am) you can’t help but look at what you are going to do when you beat the disease.   I have a whole new set of priorities and goals driving my plans.  And like most people, I’m building my plans assuming I know where I’ll be in a year+.  The difference may be that I know my plans are no plans at all but really wishes and are subject to change at any moment.  

Enough with the philosophy…a negative outcome of too much introspective time…on to the update on my progress.  As I type this I am back in the hospital for round 2 of chemo.  Three plus days of 6 treatments each 3-4 hours.   We made it through the first round in respectable shape.  In the three weeks recovering from the first round we needed several blood transfusions and numerous platelet transfusions but we didn’t spike any fevers (the critical post chemo symptom).    We did have flare up in the wounds in my back and some mouth sores as a result hitting the nadir when the chemo has destroyed all my infection fighting white blood cells.   We were able to get it under control in a couple of days with some heavy duty antibiotics and a bunch of TLC from Pam.    Appetite came back within a week after the chemo and I managed to gain back some of the weight I’d lost.  Been swinging between 10-15 lbs. over the course of the 4 weeks.  Was down to my high school weight at one point.  Hell of a diet program but not one I would recommend.    Fatigue is also one of the big issues.  Still getting in my few miles walking every day but I can nod out in the middle of a conversation some afternoons.  Of course I remember some meetings in my work history that were so boring I did the same.  Sleeping at night has improved once I got off the steroids but still can’t sleep through the night. 

All in all I’m holding up well.  They tell me to be prepared that the effects of the chemo will get worst with each successive treatment.  So far this round it has mostly hit me in the stomach and digestive system.   And least I forget…chemo brain.   It’s an inability to concentrate at times, a fogginess of the brain and of course big time forgetfulness.   I can walk into a room and forget why I’m there.  People my age tell me they do that all the time.  But I can take it to another level…I’m in the wrong room.  More on this next week.

 Till then, thank you for all the messages of support.  They are a big help for both Pam and I.

God bless.

One order of Chemo to go please

You don’t have to look far to know that cancer is out of control.  It accounts for 25% of the deaths in the US, second only to heart disease (also 1 out of 4 deaths).    There are as many as 200 different types of cancer which accounts for some of the difficulty in trying to find a cure.   Researchers are not trying to find a single cure but a solution for 200 diseases (granted there are similarities across them).

The newest trials involve extracting some of your own white blood cells (the ones that fight infections) and genetically modifying them to recognize and hunt down cancer cells and then         re-injecting them into the patient.   For those interested, here’s a good article on this (thanks for passing along Bob).

http://www.webmd.com/cancer/common-cancers-15/cancer-cure-close?page=1

 You also don’t have to look far to see that cancer treatment has become big business.   TV advertising for cancer treatment centers and cancer drugs are second only to the political ad campaigns that have been spamming the airways.   Not that this is a negative thing, I believe an informed consumer makes better health decisions.  But it would lead you to believe that there is a glut of available resources and they are competing for patients.   Certainly not my experience as I go through the process.

In the last 10 days for instance I first had to schedule an appointment for my 3-4 day hospital stay for my next round of chemo.  That needed about 10 days advanced notice to get in.   Once out, I have to schedule appointments for blood tests, Dr. visits and transfusions.   Lead times for these vary but it’s never less than 10 days and sometimes longer than 2 weeks.  

I actually have to schedule a chair for transfusions like I’m a car going in for an oil change and tune up.   “Can you check under the hood if I need platelets and top me up with 2 quarts of A+ blood.”   It gets better…I have to schedule an appointment for the appointment.  The first one to have my blood taken so they can check what kind of transfusions I might need and to do a cross match for the blood they would give me.   The second one to actually get the transfusion.

Of course you can always get immediate attention, just spike a fever.  It’s the parental attention-getting equivalent of a 3 year old throwing a tantrum in the middle of a crowed grocery store.   Spike a fever and they check you into the hospital and find room for you somewhere, even if they have to bump someone into the hallway.

 Right now I’m approaching the low point in the recovery between chemo treatments.   This is called the nadir when we have killed off all the white blood cells that fight infection and wait for the system to “reboot” and generate new good cells.    Independent of the blood tests that we do twice a week, I could tell we were getting close because the wounds in my back from the Sweet Syndrome became inflamed, reversing the slow recovery we were making.    No white blood cells, no protection and healing.    Similar situation with my mouth where I started to develop mouth sores.   Some adjustments in medications and a couple of transfusions have stabilized things and I believe we are coming out the other side and starting recovery.   Some good news…I’m off steroids for now, my sense of taste has partially come back, my appetite is good and my weight has stabilized. 

All in all we are doing OK.   Looking forward to coming out of isolation for a few days before we go back into the hospital and do it all over again.

Happy Mother’s Day!!