Tag Archives: chemo brain

Flying Solo

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2016 Trip to Iowa

I’ve lost count of the times I’ve written, “I’m hoping to get back to blogging.” Well, here I go again. I’m just going to start writing and see what happens. No promises.

I recently took my first trip alone since my bout with cancer. I finally felt confident that my brain dysfunctions from cancer/chemo had improved enough so that I could manage on my own and I headed to Iowa for a family reunion. Here’s how my first day played out on Facebook:

8:30 am:  Yes I can

Yes I can

2:30 pm: Well I’ve already weirdly hurt my leg by simply standing up to get off a plane. Something popped mid calf. Hope the breakfast I just ordered for lunch turns my frown upside down!

8:30 pm: You have no idea how much it means to me today to have this right outside my door. Hot tea any time of day or night. And I found the perfect mug for my tea.
iowa-microiowa-peace-mug

9:32 pm:  Yes, I can. With limits. … I have wondered over the past 2 years if I have become guilty of using chemo brain as an excuse, or if I have become lazy, or if I over protect myself. While I may be guilty of any of those on a given day, I think today has answered the question for me. I have improved so much and manage in my comfortable little habitat pretty well these days. But take me out of that familiar routine and subject me to a variety of situations that I have to navigate and throw in a minor injury (which made feel fragile) – well, let’s just say that I nearly blubbered all over the car rental guy, have had several headaches, and found myself hugging a complete stranger as she opened the door and welcomed me into the B&B. So grateful to have this lovely, quiet space to give my brain a rest. And for the lessons I am learning.

And this: I can’t even tell you how many times I apologized to the car rental guy for not being able to choose a car, for changing my mind about the car he gave me, for not being able to figure out something so simple about the car, for asking him to help me with my bags because I hurt my leg, for him getting wet because he had to go outside with me and it started raining. Poor Kenny!!!

It wasn’t my best day.

But it sure wasn’t my worst.

Yes, I Could. And Yes, I Did. Even though it didn’t go off without a hitch. Even though I sat in my rental car and had a moment that included an ugly cry face while it was pouring down rain.

I said I was learning lessons in that Facebook post. I added that line to convince myself that something positive was happening. And there are a few lessons I hope to remember the next time I try traveling solo with chemo brain.

Make as many decisions ahead of time as possible.
Thank goodness I did this – even the kind of car I preferred. Yeah … that didn’t work out. I couldn’t get gate information for my plane change, but I already knew where I could eat lunch close to the Des Moines airport and even where I could get a Starbucks chai latte if I felt the need before heading off on my 90 minute drive to Ottumwa. Yay Me! Do this. Always.

Ask for help. Tell people exactly what you need and why you need it.
I wish I had been more clear with the car rental guy as soon as he told me they didn’t have the car I had preselected. I don’t know cars, so when he started flinging makes and models at me it was like a foreign language. It would have been better to say, “I’m dealing with chemo brain, I’ve hurt my leg, and I’m feeling overwhelmed. I need something small and simple. Four doors. I need to be able to see out of the back window.”

Give yourself time.
Things feel so rushed in an airport. Verbal directions don’t stick in my brain these days. If something doesn’t look familiar, I may not know how to use it at first glance. Sometimes I forget where something is that I need. Often the problem is that my brain simply processes some kinds of information more slowly than it used to. This causes me to panic. So take a minute to breathe and take that extra few seconds for your brain to process.

If something doesn’t work for you, make a change.
The GPS with the rental car died before I got to my destination, so I had to go the the rental company the next day to replace it. I wasn’t pleased with the two-door hatchback I drove away from the airport, so my husband told me to ask if I could exchange it. I did, and got a car I felt comfortable with.

Plan for what gives you peace and comfort and time to replenish.
I didn’t have many options for lodging. I don’t usually think about staying at a B&B, but a little angel must have whispered the idea in my ear. Oh my gosh! This saved my sanity! What a relief after my stressful day of travel. What a joy to go down stairs to this every morning!
iowa-bb-breakfast

This place was perfection for me. Having a quiet place to retreat to and rest was essential. Also a place that was clean and where I felt very safe. And access to things that comfort me – like hot tea, wifi, and television. A grocery store nearby where I could get chocolate in an emergency. I’m pretty sure I would have been a wreck by the end of my trip if I had stayed somewhere else. And it was cheaper than the cheap hotels!

You may not always find such a perfect haven, but look anyway. If you can’t find the perfect setting, do the best you can and then provide yourself with what will help you feel comfortable. It’s ok to spend a few bucks to have hot tea all day if that’s what you need.

And separate yourself from the crowd if you need to. Go back to your room. Go for a drive by yourself. Find a quiet place to sit.

Accept your emotions.
If you need a cleansing cry, go for it. If you feel that wave of panic, accept it, breathe, think for a moment about what is making you anxious and what might help. If that means finding a friendly face and saying out loud that you are falling apart, do it. Embarrassment be damned.

Acknowledge how well you have done so far. Remind yourself that you will handle it – whatever the next “it” is.
Hurting my leg before even getting off my first plane really started to throw me for a loop. After that, each step of the way I had to tell myself, “you did ____, now you can do the next thing.”

Keep it simple.
Once I started planning my trip, I kept adding more days and more people to see and more things to do. I started to feel anxious. Bless my dear friend who set me straight and told me to keep it short and simple.

If you don’t want to, then don’t.
‘Nuff said.

Don’t pack so much stuff!
I’m pretty sure one of the reasons I hurt my leg as I stood up to get off the plane is because I was also swinging my too-heavy backpack onto my shoulder as I stood. I am always guilty of over packing and I made things harder on myself because of it. On my return trip, my checked bag was heavier, but my backpack was lighter and easier on my body.

Use your support group.
Daily (or more) phone calls to my husband, as well as texts, helped keep me grounded. And my fabulous Facebook friends encouraged me throughout the day.

Accept yourself as you are today. Trust your self-knowledge and your instinct. It’s okay to protect yourself while also taking on a challenge.

Let’s Talk … and Listen

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When I posted just a few brief words the other day, hoping that more posts would follow that action, Jacqi kindly commented that blogs are just a conversation and that my blog can be whatever I want it to be. Thanks, Jacqi.

If blogging is a conversation, it remains one-sided unless you read it and engage with it in some way. If you engage with my words, I think it does become a conversation, even if you don’t comment. If you leave a comment, there is some proof of our conversation. Feel free. 🙂

I had a conversation with myself in the shower this morning and thought I would share it with you. It was prompted by this photograph.

hockensmith familyMy sister posted it on Facebook yesterday as it was apparently National Siblings Day – a day none of us knew existed prior to the invention of Facebook. Her sharing the photo prompted some conversation among the siblings in the picture as well as a few of our friends and relatives. I’m the oldest kid and all of our names begin with K. Let’s just call us K1 (me), K2, K3, and K4. The picture was shared by K2, who is missing a few teeth. This prompted K3 (on the right)  to crop just the gap-toothed one, repost it as a comment, and LOL. K4 (the baby) laughed at our hair – three of us with basically the same “do” – a 60s flip. Several of K2’s friends commented on how much K2 looks like our mother. I added helpfully that if you hold your cursor over mother’s mouth, you can see the likeness even more clearly. Go ahead – try it! 🙂

This picture was taken when I was in high school in Corsicana, Texas, probably for a church directory. My other comments on the Facebook post were that our mom is so pretty and my sisters adorable. Also that I look a lot like our dad in this photo. This is funny, because he is my step-dad. I recalled that around that time, someone had commented to dad and me about how much I looked like him. We just smiled at each other and let it be our little secret.

In the shower this morning, I was thinking about these comments, about our beautiful, loving mom and my heroic dad. Mom’s brain has been taken over by Alzheimer’s dementia. The disease has taken most of her memories and has turned a loving, compassionate, fun and creative woman into someone who can be mean and fearful. Everyone knows it is the disease talking, but that doesn’t make it easier to experience. I’m sheltered from this because I live so far away and have been unable to travel during my long illness. Dad has been a hero to me since he loved me as his own flesh and blood the minute he married my mom – when I was 7 years old. And now he bears the burden of caring for mom during a long and difficult disease. His love for her compels him to protect her and keep her in familiar surroundings for as long as possible.

As I engaged myself further in conversation (and ran up the water bill), I thought about my frustration with residual changes in brain function that remain post cancer and how difficult it is to explain when it isn’t obvious to anyone but me. And how frustrating that is for me. And how I think mom tried to tell me something was wrong with her brain long before it was evident to anyone else. And how I did what people do to me. I said, “Oh, I do that too.”

I had a check up with my oncologist yesterday and I asked him if there was anyone out there (meaning in town) working with chemo brain. He called it the “proverbial chemo brain,” which started to piss me off even though I dearly love and respect him. He indicated (with his arm outstretched), that I was way “out there” – which I took to mean that I am a distinct minority of his patients who have brain complaints, especially a year after completing treatment. He surmised that we don’t know if it is the chemo that causes the problem or if it is the cancer itself, or if it is just the beating our body/brain takes as the result of a trauma, be it cancer, surgery, or something like he experienced last year – an aortic rupture. I guess that’s why he called chemo brain “proverbial.” I didn’t stay mad at him because he said he would do some checking and on the way out told his nurse that she should remind him about my chemo brain. There – he said it!

This all makes me sad that I didn’t listen when Mom made remarks about her memory years ago. I knew she was reading lots of books and articles about Alzheimer’s and what to do to try to prevent it. I knew that. And when we talked on the phone, she would say things like, “Boy, it seems like my memory isn’t what it used to be!” And if I asked what she meant and she gave an example, I would say, “Oh, I do that too! Last Sunday I couldn’t for the life of me remember the name of the woman I sit behind in church every week.”

And if that conversation only happened once, or maybe twice, that response may have been ok. But it happened more than twice.

Now that the shoe is on the other foot, I believe that Mom was trying to tell me that her brain had changed and she was worried. I wish I had listened to the intent behind her words. I wish I had accepted her words as truth and validated her concerns. I understand now that my misguided attempt to reassure her instead belittled her reality. I wish I could take that back.

It’s the Little Crumbs that Pique my Interest

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In a recent post, I shared my interest in the Civil Rights Summit held at the LBJ Library in Austin, Texas, April 8-10, 2014. Curious to see if I could uncover any family stories related to the Civil Rights movement, I sent out a mass email. I received only one response – from Dee Webber McLean stating that her father, Fred M. Webber, participated in the 1963 March on Washington. (Fred M. Webber was my Grandmother Abbie’s brother.) I sent a quick reply with a list of questions, but Dee didn’t have any additional information and suggested I contact her sister Bea.

I received this reply from cousin Bea in response to my queries:

I can’t tell you very much. I was 20 and ignored half of what was said at the dinner table. See below in red.

How did he make the decision to attend? No idea. He was involved in civil rights in Baltimore (and I am sure well before Baltimore), so I am sure it was a no brainer for him.

> Did he speak about civil rights from the pulpit? As Dee told you, he did not have a church at the time, though he did substitute at churches all over the Presbytery, preaching most Sundays. I would say he probably did. (At the time he was living in Baltimore serving as the General Presbyter, an executive, so he didn’t have a church.)

> I don’t know your family history well enough – was the family in New York at the time? At what church was he pastor? See above.

> How did he travel to D.C.? Did he go with a group? I would suspect it was with a group and probably by bus.

> What did he say about the experience? Sorry, I have no memories.

> Are there any photos or other memorabilia from the march? Not sure, but will keep an eye out when and if I am in family stuff. See Xmas letter attached; that’s actually how I know he was there.

> Was there any push back from the community because of his participation? Again, as he was not the pastor of a church, he did not have a local community, but rather the entire Presbytery of Baltimore and I am sure there were many who disapproved.

I do know he was very involved in the ecumenical movement, and participated in the council of churches or whatever its name was. I am sure this is something he did throughout his entire ministry. I do recall there were some meetings at our house in Catonsville attended by some Black clergy and a Catholic priest, Father Joe Connolly, I think was his name. In the Fred M. Webber historical document attached, keep scrolling through it and you will see some stuff from when he went to Rome representing the United Presbyterian Church of the USA and the Protestant Churches of America at the elevation of Archbishop Sheehan to Cardinal. This was, I know, one of the highlights of Daddy’s life and service in  ministry. I’ve attached some other stuff that I happen to have in my computer. I also have a booklet of memories about Daddy that the family presented to Mother in 1995. If you’d like it, let me know.

Of course, I said I would like to receive the booklet of memories!

And here is that one sentence from Carol and Fred Webber’s 1963 Christmas letter that tells family and friends that Fred participated in the March on Washington:

weberchristmasletter

Some tasty crumbs to follow!

If you would like to read more about Fred M. Webber, click the Fred Myron Webber tag/link at the bottom of this post.

*****
I’ve mentioned before that I am still suffering the effects of “chemo brain” – affecting my abilities to plan and organize and follow through. I’ve followed the trail of some of the crumbs above and I am excited to share them. Normally, I would be coming up with a plan on how to weave what I found into some kind of narrative. It just isn’t happening. So – although I probably won’t be entirely pleased with the results, I’m just going to dive in and do my best with what I have. Maybe something simple… like chronological order? If I keep challenging this brain, maybe it will overcome the effects of those toxic drugs more quickly. Bye-bye, perfectionism!

BTW, a friend sent me an interesting article about chemo brain last week. I knew some of the information, but was not aware of the link between chemo brain and a family history of Alzheimer’s (I’ve got that) nor the association with also having peripheral neuropathy (yup – I’ve got that too. Fortunately not as bad as some people get from chemotherapy.).