Losing It…And Trying To Get It Back

It makes me absolutely crazy when I hear, once again, from a cancer survivor who is suffering from fatigue and cognitive deficits for months & years after treatment, and is getting no help from her docs, or understanding from family and friends. Time to re-post this, one of many posts I’ve written on the subject. [February 20, 2011, Kathi]

The Big Brush-Off

On the day I got my seventh radiation treatment, I first became acquainted with cancer-related fatigue, although I didn’t know it at the time. That was about nineteen months ago. I remember that day vividly. It was a beautiful October morning, brilliantly sunny and gently warm. I was still grappling with breast pain and swelling after my surgery, but otherwise feeling okay.

That morning, I drove myself to radiation, drinking a large coffee and listening to the news on the radio. I got zapped and drove home. When I pulled into my driveway and started to get out of my car, I all but collapsed on the ground. Somewhere on I-95, I’d obviously been run over by an invisible eighteen-wheeler. I crawled into the house, made it to bed and slept for the rest of the day.

By the time I got to my tenth radiation treatment, I’d developed a raging respiratory infection. That was the day I first became acquainted with The Big Brush-Off. There I was, at a large teaching hospital, at a “comprehensive” cancer treatment center, and no one would help me. My radiation oncologist, the head of the department, told me not to be concerned about “feeling a little tired. That’ll go away in a few months with a little extra sleep.” But wait, I told him, I’m not just tired now; I’m sick and I have a fever. “Oh, we can’t help you with that,” he told me, “you have to go see your primary care doctor.” Huh??

It is well-known that ionizing radiation destroys healthy cells and lowers your blood counts. But no one at the Comprehensive Cancer Center ordered any blood work. No one even took my temperature. I think a nurse listened to my lungs, but I’m not sure. My upper respiratory symptoms were severe and obvious, as well as a common consequence of radiation to the breast area, but no one offered any treatment. At that hospital alone, there are over 1400 physicians, but evidently none of them knew how to treat an upper respiratory infection. This ersatz comprehensive cancer center boasts a patient navigator program for breast cancer patients, but I guess they don’t help navigate sinusitis or bronchitis. The center has a “sick line” for patients to call for help with treatment side effects or infections, but I guess if your oncologist insists that your sickness has nothing to do with your cancer treatment, they don’t care. So, two weeks into radiation, feeling utterly wretched, I had to drag myself home and, on a Friday afternoon, all but beg my over-booked PCP to see me. Thank goodness, he did. I left his office, started taking Amoxicillin, and felt a lot better in a couple of days. Well, physically anyway. I also felt appalled and disillusioned about cancer treatment.

There were to be many more brush-off’s during treatment. I gave up entirely on the radiation oncologist, and haven’t been back for a “check-up” since my six-month post-rads visit. I changed medical oncologists. I can’t avoid my surgeon as much as I’d like. The last time I saw her, I had finally figured out that there was something called cancer-related fatigue and that “chemo-brain” and its cognitive issues also affect those of us who didn’t have chemo. She asked me how I was doing, and I told her. I figured that, out of all my cancer docs, because she’s an ob/gyn as well as a breast cancer surgeon, she might actually help me. After listening impatiently for a few minutes, with obvious exasperation she asked, “What do want me to do, Kathi?” Oh, I dunno, maybe act like a doctor??

It wasn’t until I stumbled upon a research study on cancer-related fatigue that was still looking for subjects that I finally met a couple of doctors who did give a damn. One of them provided supportive medical care to cancer patients, and had helped write the PDQ on cancer-related fatigue on the National Cancer Institute’s website. So, not only did I at last get some massive validation for what I was going through, I got to participate in research that might lead to a treatment option for cancer fatigue someday. And they generously offered free advice, research updates, and consultations for as long as I needed them to help me battle my fatigue. I brought their suggestions back to my pcp, and finally, I started experiencing some improvement around the beginning of this year.

Pardon Me, I Have Slush Brain

From the moment I heard my diagnosis, even before treatment began, something else began happening to me — I started to lose my mind. Not all of it. Just the parts that revised their SOP the instant they heard the word ‘cancer’ and began to operate as though nothing else in life was as important as dealing with it. I couldn’t quibble with that thesis to a large degree, but there were times when it was a tad inconvenient. Noticing that your brain has been momentarily kidnapped can be rather alarming when you’re behind the wheel on a major interstate, for instance, and you realize you don’t remember driving from Exit 8 to Exit 21. Or when you’re dressing for yet another doctor’s appointment and you can’t find any clean underwear, owing to the startling realization that you haven’t done any laundry in three weeks. Cancer, I began to muse, isn’t what would kill me. It was these damn TBF’s [Transitory Brain Farts] that were gonna finish me off.

I can put up with almost anything as long as I know it’s temporary. I figured, when I was able to figure anything, that these TBF’s would go away eventually, or at least ease up as time went on. Except that they didn’t, not exactly. Instead, they seemed to morph into a daily presence, decreasing in intensity perhaps, but hanging around all the time in a dilute form. Kinda like developing a rash after recovering from hives. Problem is, there’s no such thing as mental calamine lotion. Too bad. It’s pink, so it’d fit right in with Breast Cancer Awareness Month.

Personally, I’m astounded at how many of us manage to function — and to all outward appearances, function well — despite enduring an unshakable, chronic case of post-cancer slush brain. I’m talking about intelligent, accomplished women here, like physicians, nurses, professors, writers, bankers, computer programmers, who are frequently also mothers and grandmothers, finding that they just can’t concentrate sometimes, or they don’t remember details, or they aren’t able to grasp complexities they used to deal with on a daily basis. And mostly, getting no help and little understanding from their cancer docs. So, what do we do? Most of us are adept at problem-solving and adapting. We don’t spend a lot of time whining and feeling sorry for ourselves, we just get on with it. We have kids to nurture and students to teach and patients to help and customers to satisfy. If we can’t do everything the way we used to, we figure out another way. We have to. We have people depending on us and bills to pay. But for a lot of us, sheer willpower and persistence don’t get us back to normal, or even back to the same neighborhood, and we find ourselves facing some tough adjustments and decisions, at a time when we might be least equipped to make them.

Double-You Tee Eff??

“…I can remember just sitting there and thinking, ‘My brain is just absolutely dead.” This is a quote from a woman with breast cancer who participated in a study of “chemo brain” published in 2009 by the Journal of Cancer Survivorship. Depending on what you read, it is estimated that between 15 and 80% of people who are treated for cancer experience cognitive deficits. For many, these deficits appear to resolve themselves within six months of completing acute treatment, such as surgery, radiation and/or chemotherapy. But many continue to experience cognitive problems even ten years after active treatment. It has also been found, in recent years, that these deficits affect patients who have not had chemotherapy as part of their treatment, but have had some combination of surgery, radiation, or hormone therapy. Because of that, the term “cancer-related cognitive dysfunction” has been coined. That there would be neurotoxicity directly associated with chemotherapy drugs and radiation to the brain is hardly surprising. But there are also changes in the immune system that can be brought on by the other aspects of cancer treatment — such as damage caused by radiation to any part of the body, surgery on or near groups of lymph nodes or major lymphatic vessels (which includes pretty much any surgery), and our physiological responses to stress — that can contribute to neurologic changes leading to fatigue of the body and the mind.

Many of us pay a high price for being unable to think the way we used to. After foolishly supposing I could just pick up my life where I left off, I returned to my full-time job as a physical therapist within days of finishing radiation. Had I received better care from my doctors, perhaps I would have known better. But informed consent and information on the long-term consequences of treatment were simply not provided by my cancer docs. I’ll never know now if I would have recovered more quickly from my fatigue and cognitive problems had I stayed out of work a little longer and worked my way gradually back to full-time. But because I didn’t, my fatigue rapidly snowballed until I was forced to cut back my work hours, a situation I am about to have to make permanent. This means I have to give up 20% of the income I’ve been used to and still somehow pay the bills. And yet, I know I am fortunate to have a job in this economy and to have one that permits me to adjust my hours.

  • “When I was diagnosed, I was the project manager for a $24 million government project retrofitting military aircraft. I had thousands of engineering drawings and concepts in my head. I had names and phones numbers [and] figures. I had a mind like a steel trap. For the first three or four years after treatment I was totally useless.” From the Journal of Cancer Survivorship study

The breast cancer survivor quoted above was a single mother of two children at the time she was interviewed for the study. Because she could no longer do her former job, she had to take a job that earned her $25-30,000 less than she had been making. When her friends, not understanding the cognitive changes she had suffered, asked why she was working below her skills, she too felt grateful at that point to be able to earn anything at all.

Better Living Through Chemistry?

I have surely developed a new respect and even awe for neurochemistry, especially my own peculiarly damaged neurochemistry. I’m amazed that it’s been working at all, but I positively marvel at how resistant it has been to any and all attempts to help it recover. I have tried possibly everything recommended for cancer-related fatigue and cancer-related cognitive dysfunction, and I can tell you first-hand that my efforts have been forestalled and frustrated to a degree I would not have thought possible. No matter how much sleep, healthy food, chocolate, moderate exercise (when I can move at all), laughter, counseling, caffeine, pleasure, or nutritional supplements I have consumed or experienced, the struggle continues. I have taken drugs that should have had me bouncing down the street doing hand-springs, and have merely found myself needing a nap after taking them. I have read enough research articles to garner a Ph.D., and I have even participated in a number of research studies as a subject. I feel like I’ve become some kind of a mad-scientist version of myself. But normal? I don’t even remember what that feels like anymore.

I think I may be the only person I know who fell asleep after taking my first 20 mg of amphetamine salts. How sad is that? How annihilated does a person’s brain chemistry have to be not to respond to that much generic Adderall? I even tried Ritalin, which left me feeling scattered and grumpy and less able to concentrate rather than more so. Even the latest miracle drug, Provigil, didn’t work for me when I first took it last summer. It was great for a few days, then phhht. What finally worked was a large dose of Wellbutrin, an older antidepressant that works on helping the brain stockpile dopamine and norepinephrine. It did help. It doesn’t help stockpile much serotonin, though, which ultimately pushed me off the rails for a while, but my usual SSRI got me back up. I also tried the Provigil again, and found that it works, now that my fatigue is somewhat better. Perhaps the best thing about all this may be that my primary care doctor is willing to help me slog my way back to normal, however long it takes. He’s read up on this whole subject, and he’s known me long enough to understand that I am not myself. There’s comfort in that when I’m feeling like a failed chemistry experiment.

Yesterday and today, I think the amphetamine salts have helped. I’m not exactly a ball of fire, but last night I was able to focus enough to assemble a new lawnmower and to try out a new set of clippers on my uncooperative Persian cat. You may laugh, but these are exactly the kinds of tasks that have been defeating me for months now. I’m also on vacation from work this week, which is helping. Perhaps the most challenging aspect of all this is that I’ve had to keep lowering my expectations for myself. Sometimes daily. Sometimes several times a day. I won’t even tell you how long it took me to research, write and draw graphics for this blog post. I’m just happy I can blog at all.

As with many of life’s challenges, surviving this mess has been all about perspective. I don’t have to like any of this, and I know better than to pretend it doesn’t make me feel bad sometimes. But I also know that feelings are not facts. And feeling like a failure, a mere shadow of my former self, does not make it true. A key element in cancer survivorship is validating your own success in beating the damn disease in the first place. And I’m relieved to know that my stubbornness, my skepticism, and my sheer contrariness are all very much intact. As is my desire to help others by sharing my experiences.

And if all else fails, there’s always double espresso.

Further resources: this is a pdf from the Pine Street Foundation with lots of practical advice about how to get help for Cancer-Related Cognitive Dysfunction.
And here’s an updated link from Pine Street on Chemo & Cognitive Dysfunction: Your Mind and Cancer Treatment

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Tuesday, May 25, 2010 at 11:05 am, filed under Chemotherapy-IV & Oral, Cognitive Dysfunction & Depression, Fatigue, Health & Healthcare, My Work Life, Nitty Gritty, Radiation, Survivorship and tagged , , , , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

16 Responses to “Losing It…And Trying To Get It Back”

  1. Kathi, As usual a great post. When I started reading it I immediately thought “Kathi really should put all this into a book”. A how to survive cancer treatment book or something. I think you write really well. You obviously have put in the research. Your posts are so informative. I know that you really don’t have the energy to do it but maybe you should just do a little at a time. I think it would be very helpful to others.

    Love you….keep hanging in there.

  2. I didn’t have chemo or radiation, but I did have three surgeries (involving about 10 hours of anesthesia) in 2008, when I was dx with bc. After almost two years of feeling rather stupid, unable to remember details and numbers (important because I am a budget analyst) I am beginning to see my cognitive ablities return to normal. I think there is anesthesia has something to do with it so I call it anesthesia brain. I hadn’t thought about the effects of hormonal therapy on cognitive ability, Thanks for giving me something else to ponder!

    I like the caffeine graphic. My drug of choice, along with ‘vitamin I.’

  3. Kathi, my little turkey pie…I loves you.
    Chemo brain,
    Radiation Brain, they both mess us up.
    Thank you for enlightening me to how bad the effects of Rad. can be.
    I never had a clue and I would never want to be a jerk and say something jerky to someone who was going through this thinking it was somehow not so bad as chemo.

  4. vitamin I = Ibuprofen.

    works better than Acetaminofen for me

  5. Duh…me, too, Lisa, because vitamin I is an anti-inflammatory and Acetaminofen is not. 8D

  6. Kathi,
    Thank you, for this wonderful blog!
    Truthfully, I have been at the end of the rope, feeling lost, fatigued, exhauseted, hopeless, lazy, stupid… wondering if I can tolerate another day, feeling this way and that way…
    I feel re-newed, and rejoice with hope… hope that you have shared.
    Ibuprofen… works well, but upsets the stomach. I’ve experienced chemobrain and cancer-related fatigue… sometimes I think doctors figure, we aren’t important, and heck, with these chemically induced fog-brains… we’ll all just “forget about it”…
    Truthfully, I was really feeling alone, really alone, until I began to read your blog yesterday… wish I’d found it sooner! You are truly a magnificent woman, with many skills… one of which is compassion, understanding, caring, heart, intelligence, and ultimately, hope and love of life!
    You are somehow, a dear friend, even though we don’t know each other…
    Sistah!!! I like that…
    When I go to see my Oncologist, I hope you don’t mind if a copy & paste some of your insightful words of wisdom… HOPE… 🙂

  7. Indi,

    I’m so glad you found some resonance in this blog post. And by all means, copy away. From what I gather, there is a small group of oncologists scattered across mostly North America, but maybe a few other places as well, who have been presented with passages from this blog, and are possibly cursing the day I was born. Which, because I am such a bee-atch, makes me very, very happy. 😉

    Good luck, Sistah. Hang in there & know that you are not alone.

    Oh, and BTW, a lot of my pink links will take you to original research studies, which are in PDF format when I can find them that way, so you can copy those, too, and give them to your doctor to prove that I didn’t make all this up. XXOO

  8. Thank you again. I’ve now read this post (after reading hte F-word one). You are awesome. Thank you!! You are expressing so clearly so much of how I have felt/feel. So helpful and inspiring. Rock on!

  9. Thank you again each time I read, some little spark starts to ignite! Seems to be too much needing more flint to get started. All I know is God loves me, a little more with each little bit opening up after each reading. Boy, reading does get harder…seriously harder…to break down the meaning in each little phrase or word. God, stay close to us all.

  10. […] you may find helpful: Adapting: Practical Stuff for Hands and Arms Back Talk 101 Back Talk 201 Losing It and Trying to Get It Back Please click on the post title or the comment link below to post a response. This entry was […]

  11. OH YA Can I relate to this one… good to read it again. The cognitive effects are the little invisible impact that like weirdo drug side effects are all in our heads (??) I don’t think so!!!! 4 years out and my brain is just starting to come back to somewhat “normal”?? Whatever that is 😉

  12. Re-reading this is good. It helps. Thanks.

  13. I forgot to add … “… because, by-God, I certainly can’t remember it! HAHA!

  14. […] Dr. Patricia Ganz is one of my sanity-saviors. It was reading a study conducted by Dr. Ganz and her colleagues, about the immune system biomarkers associated with cancer-related fatigue, that helped me endure and find help with my own fatigue. Dr. Ganz, if I ever meet you in person, please forgive me if I am moved to break into tears and give you a heartfelt hug. You are one of my research goddesses. And I’ll probably have to give you another hug for reinforcing the eminently crucial notion that patient reports need to be taken seriously. “We are chipping away at getting a scientific database to persuade people,” Ganz said. Yes, you are, Dr. Ganz. And bless you for that. To the doctors who did not do their jobs by informing me before treatment of its possible long-term effects, or listen to me afterward when I was suffering from them, here’s a virtual bitchslap and a link to an old post that summarizes the needless misery you helped put me through: Losing It And Trying To Get It Back. […]

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