ELDER MUSIC: Mozart's Lesser Known Operas
Crabby Old Lady and End of Literacy

Chemo Brain and Bravery

[To be clear, I want to assure you that I don't intend to turn Time Goes By into a cancer blog - I have plenty of other interests in regard to aging.

But for the two weeks I was stuck on that prehistoric laptop with the speed of a slug, I could not bear to spend more than an hour at a time on it so it was less irritating and easier to write from current experience than about anything that needs backgrounding and research.

At last, on Saturday afternoon, my computer was returned to me in pristine condition, all my files intact and with normal computer speed restored, thanks to an ace tech guru a friend found for me.

I'm now in the process of putting my files in order, catching up on the real work of Time Goes By and I expect to be back to full production by the end of this week.

Meanwhile, I know that during the computer hoo-haw, I missed answering a lot of reader email and lost some of it due to the hinky email program I had to use. So if you were expecting a reply and didn't get one, my apologies.
]

* * *

CHEMO BRAIN
For three or four or five weeks after my cancer surgery in June, I was stuck with what hospital personnel called “anesthesia brain” which can apply after especially long surgery – mine was 12 hours. It was frustrating.

Just putting simple sentences together took more effort that I often had. There was a small hiccup of time between someone saying something to me and my understanding of it. And ordinary kinds of focus were almost impossible, in general and particularly on reading as I inexplicably lost interest after a sentence or two.

After that first month, the fog lifted rather swiftly over one weekend and until recently, I didn't notice any of those symptoms again.

Now, apparently, I have intermittent “chemo brain” which is defined differently in different medical circles. One of the nurses at my chemo clinic seemed thoroughly familiar with the phenomenon and implied that it does not necessarily disappear when chemotherapy treatments are done. Oh joy.

The Mayo Clinic, on the other hand, reports that little is known about chemo brain and seems to say that it occurs in cancer survivors, which I am not (yet).

”Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

“Though chemo brain is a widely used term, it's misleading. It's unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience.”

In my case, it appears during the three weeks I am “on chemo” when I can tell my thinking gets fuzzy, although it is not as debilitating as it was after my surgery. On the week off from chemo the brain fog gradually lifts and then I start the routine over again.

There is no byline to the Mayo Clinic story, just “Mayo Clinic Staff” which can mean anything and anyone so there is no way to make a judgment about it. There are a lot of unanswered questions in the realm of cancer.

BRAVERY
I want to talk a bit about cancer and bravery. Last week, on my post about how busy cancer keeps patients, a reader named Barbara who blogs at Frugal Juice - Life Begins at 70, commented that

”...you are teaching me to be brave as you are so brave to meet each day.”

Barbara is far from the first or only reader, in these months since I was diagnosed, to mention how brave I am. It is not possible for me to express how much your repeated encouragement, love, concern and caring means to me as I tackle this new and unexpected journey.

But brave? We've discussed what it is or is not in these pages in the past and it was clear then that there are many definitions.

This time I am not so interested in what it is in the dictionary or philosophical senses. I care more about why (however many are the ways I might personally define bravery) I don't believe the word, the idea, the intention apply in my current situation.

Was it brave to undergo a 12-hour surgery that has required months of recovery to feel almost normal again? When I asked the surgeon what would happen if I refused such a dreadful-sounding intrusion of my body, he said I would be dead by the end of the year.

That's not bravery, that's survival, the inbred imperative of all animals to avoid death at nearly all cost.

Some readers have attached the notion of bravery to my willingness to write about my cancer experience. Well, here's one secret about that: whatever I said at the top of this post about other interests in life, cancer does tend to take up a lot of space in one's mind often leaving little room for much else so you get these missives.

I write as much to winnow out some meaning and understanding for myself while trying to find some universal significance for readers. That is not bravery and it embarrasses me to be included in the category.

I'm a fairly simplistic thinker and the first thing that comes to mind about bravery is, for example, the soldier who rushes into a hail of bullets to save his buddy – the kind of person to whom we award the Congressional Medal of Honor.

Or, that person who stood in front of a convoy of government tanks in Tienamen Square during the protests of 1989.

Or a parent who runs into a burning building to rescue their child. You know what I mean, and I say that even understanding other, less dramatic but equally stunning forms of bravery.

What I have chosen to do in this circumstance, as I see it, is to endure. To persist. To persevere. For as long as that may be possible.

And if you don't count the annoyances I have given full voice to here, it's not really a big deal what I'm doing because, as I often ask myself (more rhetorically now than otherwise) is what else am I going to do? What else is there to do?

The only answer I have is: just what I'm doing. Just what I did before this with the addition of those damned annoyances.

Oh my, this got much longer than I intended. See what happens when you give me back my working computer. I'll stop now.

Comments

Okey-dokey - forget bravery, although I think that it can exist as a mindset, as well as in actions, and is laudable as a confrontation to fear.

And often, taking that stance is a conscious choice, as the fear and its attendant, bothersome mind-freezing chattering is held at bay, so the physical, emotional and mental functions can cope.

Sometimes forcing oneself to stop delving into self-pity or depression is bravery to me.

I want to thank you for sharing about "bravery" and your experience overall with cancer. You're right - it's not bravery. It's the choices we make because the alternative is worse. I spent the last two years caring for my mother as she faced ovarian cancer. People wondered at her positive attitude, but she simply made a choice to act that way. Otherwise she would lose the time she had left to enjoy her life. I blogged about my caregiving to help keep people informed, but found I truly needed the outlet more for myself.

"Chemo brain". A concrete explanation for what even those of us not undergoing chemotherapy can understand and empathize.
As for "bravery", yes, facing up to all you are facing up to may be "survival instinct" but it is still brave, particularly the way you do it.
We have always been grateful for your presence in our lives. Even more so now, on so many levels.

I think you're bravery is communicated in your tone. You aren't whimpering. You're getting on with things. And you're still trying to help your readers sort this all out. Salut.

Of course I meant "your." Sorry about that.

oh, Ronnie, I have been following your experiences throughout this step in your life and my heart goes out to you. Having experienced breast cancer treatment as well as losing one kidney to cancer I can relate so much with what you are going through. Where we part ways is that my two battles were simple in that neither cancers were as devastating as a pancreatic cancer diagnosis is. I was fortunate in that I worked with health care people who gave me so much support and information. I will never forget the first experience when I learned I had breast cancer. It was surreal going through all the motions. Whenever I felt particularly sorry for myself I only had to walk over to the Children's Hospital and see the little ones (some w/ tubing) being pushed by their poor parents through the gift shop. I truly would have given up my life for one of theirs. Treatment is a long journey and changes one's life but what is the option, as you have mentioned. I am grateful that I found your blog a few years ago and have learned quite a bit through the information you have passed along. You've done a great job. It is interesting how much more we can savor life when we believe we may not have much more time. Best wishes in your journey.

So glad your computer is resuscitated!

Most of courage is about 'keeping on keeping on' -- which for most of us is the habit of a lifetime. Dare I say, especially for women? Men seem to do courage differently.

Thank you for sharing your journey!

Enjoying. That isn't the right word to describe the feelings I'm getting from reading about your cancer journey, but I'm learning more from you about the process than I learned from my mother-in-law, sister-in-law, two dear friends, and now one of my best friends. All I can say is that you are brave in your willingness to share your journey, your feelings, your ups and downs, the "chemo brain", and so many other feelings and emotions that I see in your writing.

For a change of subject, I am so very glad that you have your computer back, with all your files. Have you gotten an external hard drive to save all of those files that are so important? It is so very important that you have another place to save and/or hide them.

Bravery isn't the word, it's generosity. You give others a way to ask themselves how they would react in your circumstances. Could they speak about it? Would they be so afraid they would hide what is happening, from themselves and others? You have a self awareness and, yes, a generosity that speaks to all of us. You show yourself and others can imagine their own experiences.

I have had my own cancer experience, with chemo, surgery, radiation, so I know some of the things you are talking about. And I know how hard it is to talk to others about it. Thank you for doing this. It matters to speak about it, so that we can all know how it is.

Anyone I know who has experienced a lengthy illness and/or operation goes through the mental symptoms you describe. It is all, I'm convinced due to the treatments and medications you receive. It's tough on your system, and especially on your brain. I've been following your progress through all of this. You have the love and admiration of a large community of people—all of whom think you are extremely brave.

Dear Ronni, I read your posting today while eating breakfast--cereal with craraisins, walnuts, and almond milk. As I enjoyed those flavors I slowly read your words and thought about them. The word that came to mind with regard to bravery is "choice" and I see that others have alighted on that word also.

To be brave, I think, is to make an effort to recognize the choices that are available and then to choose the one that will bring--in some measure--new life to a situation. Bravery is a redemptive virtue. It redeems us from the negative belief that we have no options or that all the options are worthless.

Digging for the hidden diamond/meaning in the options calls for bravery and then choosing one that will bring life in some way to us or to others is another act of bravery.

I think you've demonstrated bravery throughout this whole experience. For sure you've demonstrated the bravery of grappling with how to share with all of us. Thank you. Peace.

You're my she-ro, Ronni. Not because you're brave, but because you have aways seemed to squeeze every damn drop of meaningfulness out of whatever you do...to find the humor, the lesson, the opportunity or the beauty within it. If that's not living fully, what is?

I too have pondered the use of brave in this context as you see it so often. Cancer is not something one chooses in order to be brave. How you deal with it once you have it is where the bravery comes to the fore. So many great comments above, because you share your journey so bravely and forthrightly. Ha, is that a word? Who cares? Always appreciate your thoughts.


How about, Bravery is reaching for survival instead of death.

I agree with your statement about being brave. Maybe it seems brave to others because they certainly wouldn't choose to go through surgery, chemo, and radiation. Those things are scary stuff. But when your survival depends on it, there's really no decision or bravery involved. You just have to grit your teeth and do it because the only alternative is waiting to die without lifting a finger to save yourself. I can't imagine doing that.

Also about writing. I didn't really plan to have a cancer blog. I wrote entirely for myself, because I had to. There was so much to keep straight, so much I wanted to remember accurately, and so many thoughts and feelings I needed to sort out. I've always written for those reasons. My blogs are just my invitation to readers to come along, if they want to

I'm still wondering about chemo brain. After my treatment, I didn't think I had it. But in the two years since, I've noticed more impatience, a shorter attention span, and a really annoying (but only occasional) inability to recall names and words that are right on the tip of my tongue. When it happens I always wonder if it's chemo brain or just normal aging. (I'm 74.)

Just keep on saying "Yes" to life!

I agree Ronni. Enough of this bravery talk--but it's okay as long as it's kept in proper perspective. I think what you are doing in the face of cancer is more like MOXY, to use this seldom used, lately, term.

Or is it MOXIE. Whatever. I'll go with either.

At first, I was going to substitute the word "stubborn" for "bravery" but after looking up both words in the on-line dictionary, nope, it's "bravery" all the way, Ronni!

Merriam-Webster says: the quality or state of having or showing mental or moral strength to face danger, fear, or difficulty

It seems to me that you are using the writing craft you have honed over the years to both clarify your situation to yourself and also to educate others. This is a gift that I, for one, am grateful for.

Glad to hear you have your computer back and are in the process of resuming your routine.

I applaud you...brave or not...or whatever it's called...it needs no title. I love to hear your voice speaking through your words on the screen. Thank you for sharing. For me, it helps me have a better understanding of how my young daughter is getting through this chemo-nonsense (as we call it).

I was once thanked by the nurses and technicians for turning up to a secondary screening (lumps in my breasts - turned out to be nothing but always worth the check).
I asked them why they thanked me when they were helping me, not vice versa - “so many don’t attend follow-ups..” was their response.
I thought then, and I still hold true - what stupid people! Why worry when maybe you don’t have to and why do nothing when time may be of the essence to a good outcome. When the choice of do nothing has only downside and/or needless worry, what a crazy decision.
Survival it is! (Side: I’m aware sometimes it is also about quality over quantity when choices might be more life limiting).
But sometimes it clearly takes a little bravery to make the first move to acknowledge that we are the captains of our bodies to some degree - what we choose to do, and what we choose not to do.
x

I agree with SM's statement about quality of life. That has always been of utmost significance to me, and I think it will be until The End.

Whatever else I might say has already been said by your super-eloquent readers. As long as my life has some degree of quality (each individual must define that concept for him or herself), the fight is worth pursuing. For whatever reasons, if/when there is no longer any quality remaining and no hope of future improvement, I would find it difficult to continue a painful and debilitating contest with a known end. I'm not that brave or courageous or moxie-ful (new word?)!

However, I've said many times that no one knows what they will do in such a situation until they are in it. I believe that I'll "walk the walk" when the time comes, but it hasn't come yet, so who knows?

Glad you have your computer back, Ronni. Machines (and bodies) can be SO frustrating when they don't work right.

sflichen, Ditto

My biggest fear is that one day I will have to get up and check my calendar for doctor appointments, Count out all my pills and my new best friends are wearing white coats. Lets face it, you are so brave to meet each day with a great sense of humor, still caring about others and keeping your (stuff) together. The day they told you that you had cancer, I'm sure it wasn't much different than running into a burning building.
I've always been a big baby about things happening to me. You are teaching me some good (Stuff)
THANK YOU

Please ask your computer guru how to back up your data... and then do it! You got lucky this time. While the blue screen of death is never good, it is less bad if you know your email address book is safe on that thumb drive.

I am an RN and medical librarian, and worked in a cancer center until my retirement. In the world of cancer support , including groups and literature, you are considered a survivor from the day of diagnosis.-- Just throwing that in.

Thank you, everyone, about computer backup. Of course, my computer has always been backed up but it's not useful when the computer won't boot. And in this case, not useful when the temporary, stand-in computer is too old and creaky with a teensy hard drive to attempt to transfer the information.

All is well now.

We-ll, you could have, after surgery, just folded up your tent, become passive and "poor me," and you sure didn't. And you are right, it's not the same type of bravery as running into a burning building, yet I do think it's a quiet bravery all the same. Bravery also doesn't come without fear, does it? Being scared, but doing it anyway, that qualifies. I think you're in.

All of the above . . . plus, your brain seems to me to be working just fine!

“Brain fog” was the term I used when I couldn’t recall something I was trying to convey to my oncologist. He told me that’s the term for one of the side effects of chemo - here I thought I was being so original.

Though my treatment is one of the newer “targeted therapies” for CLL, it is still considered “oral chemo” - which, incidentally, does not have parity as far as Medicare coverage. Big problem when I turn 65 in a few months and literally will have a 10K yearly copay. I operate in a state of low level panic alternating with depression most of the time.

I hate that you or anyone has to go through this, but reading about your and other’s experiences give me respite from the solitary nature of this unfortunate journey. Thank you for the definition of survivor, Meg - I’d always thought it was some status of being cancer-free.

Perhaps bravery is a relative term that can be appropriately applied when someone takes action that presents risks of its own to counter a life-threatening situation.

Doubtless there are various terms to characterize how you’re living this phase of your life, including the consequence of your sharing the experience here — your perceptions and that of others are likely highly individual. In fact, instead of one or another, most of the terms mentioned by you or others here could be applicable descriptors.

Continuing to send positive thoughts to you — fuzzy brain or not!

fuzzy brain

Sorry, Ronni, I hate to contradict you, but you are brave, and you posted the exact words a brave person would say. There are many ways people with life threatening illnesses can cope, and people with foggy brains can interact, and you choose to see clearly, act forthrightly, and share extremely personal experiences for the edification of others (not for sympathy and not for self aggrandizement in any way). I have read about heroes and heroines, and watched documentaries about ordinary people who take risks in extraordinary circumstances, and they all say the same thing:”what else am I going to do? What else is there to do?” That is what a brave person with a moral compass says. You could disengage with the world, you could whine, you could sit in a chair and be depressed. But you face every challenge and without blinking, share it with us. You match the profile for bravery, Ronni.

Agree with all your say about bravery, Ronni and "what else can you do but endure". And you do that so well while continuing to educate, inform and entertain us with your wonderful honesty and care.

You and Hattie are a fine pair of role models.

Perhaps instead of bravery the word one searches for is courage? :-) I do understand survival instinct.

There's a thin line between bravery and resolve.

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