(Chemotherapy-induced Cognitive impairment) AKA: Chemo Brain

I spoke to a member of Livestrong.org in reference to my recent memory/concentration issues. My info was forwarded to The Cancer Center of Long Island (with whom I am now playing phone tag). Melissa at Livestrong felt very strongly that what I am experiencing is “Chemo Brain.”

From The Mayo Clinic:

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, cognitive changes or cognitive dysfunction.

Though chemo brain is a widely used term, it’s misleading. It’s not yet clear that chemotherapy is the cause of concentration and memory problems in cancer survivors. And many cancer survivors with memory problems still score well on cognitive tests, leaving doctors wondering whether chemo brain really exists.

Despite the many questions, it’s clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.

I also found in a NY Times article (with my wife’s help) this comment to the following article:

It seems to me odd to talk of chemo brain without reference to specific therapudics. Do all chemotherepudic drugs cause chemo brain? About 25 years ago, I had Hodgkin’s Disease. A course of drugs I took included vast amounts of prednesone, a steroid. It made me temporarily psychotic. –extreme chemo brain. But after that drug was eliminated from my regimen, my recollection (cloudy as it is now of those times long ago) is that the psychosis abated and I returned to near normal, while on other seriously strong drugs. For the cognicenti, MOPP had the steroid and ABVD was alternated with MOP (no more prednesone). So far, I am in remission.

-Bob Roistacher

I received ABVD for Hodgkin’s as well and steroids were pre-administered as well. I was told some Steroids were also in the anti-nausea meds I received. So I’m full of questions. Typically most cases of ”Chemo Brain” being reported are mentioned with primarily Breast Cancer treatment. But it seems a lot more research is needed with this particular side effect. Melissa at Livestrong agrees.

Signs and symptoms of chemo brain may include:

• Being unusually disorganized
• Confusion
• Difficulty concentrating
• Difficulty finding the right word
• Difficulty learning new skills
• Difficulty multitasking
• Fatigue
• Feeling of mental fogginess
• Short attention span
• Short-term memory problems
• Taking longer than usual to complete routine tasks
• Trouble with verbal memory, such as remembering a conversation
• Trouble with visual memory, such as recalling an image or list of words

(I can relate to maybe 7 out of the 13 above…that’s about half)

NYT link: http://well.blogs.nytimes.com/2009/08/11/coping-with-chemo-brain/

The fact that I am 2.5 years out of treatment and just starting to experience this is confounding me. But it is much like my recurring bone pain which neither of my Dr’s will relate to my treatment, it comes and goes on it’s own will. This memory issue appears to be easily traced back to a few innocent occurences this year. As far as I can tell not much further back than that…but just like when I was finally diagnosed it call came together after I recognized the symptoms. Once I knew what they actually were, I could trace them back a full year.

Tomorrow I follow-up with my PCP on new blood work and my BP issues. Hopefully my new weight will lower cholesterol numbers and get me off the BP meds and keep me away from Cholesterol Meds. I will bring up this memory/concentration problem and see what she recommends.

I will not see my Oncologist until January (after my year-end PET scan) unless someone at The Cancer Center of L.I. advises me to get him involved in some form of treatment here.

Here is another article: http://www.nytimes.com/2009/08/04/health/04brod.html?_r=1&em

From that article: 

Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities.

In those affected — and doctors at this point have no way of predicting who might be — it is as if the cognitive portion of the brain were barely functioning. Symptoms are most apparent to high-functioning individuals used to juggling the demands of complex jobs or demanding home lives, or both.

and another: http://www.nytimes.com/2009/08/11/health/11brod.html?ref=health

So this shitty adventure with cancer continues to take me along for the ride and it doesn’t seem to be going away anytime soon.

By the way November 4th is exactly 3 years to the day I spotted the swollen lymph node in my neck that changed everything…that will be another “odd” day for me, as will most of this holiday season since so much of it was tainted with exams and scans and needles and Doctor consults etc.

On December 19th I will mark 3 years since I was officially diagnosed. AND I AM STILL HERE!

Late term side effects be damned.

Be well.

illustration by artist calida (www.artistcalida.com)

My family is the real-life version of the Griswolds from National Lampoon’s. More space cadet than rocket scientist. The kind of people who are really good at getting in their own way.

You’ve seen us before. At the rest stop wondering how we drove 40 miles in the wrong direction. At the movies bragging about how we’re smarter than everyone else with our store-bought sodas and garbage bag full of homemade popcorn. Hours late to all the events we didn’t RSVP for.

So, several months ago, when I started suffering from chemo brain — short-term memory loss and a decline in cognitive abilities due to chemotherapy — I wasn’t sure whether the drugs were to blame or my Garcia genes. Let me provide a sketch of the patriarchs of our family for a little context.

My dad, Joe, has belt-attached holsters that sit on both hips. One is for his cell phone and the other is for his glasses. That in and of itself is pretty funny, because my dad wears his pants so high that his belt is typically above his belly button. But the real reason I bring this up is because he purchased the special holders to keep track of his phone and his specks, which he loses all the time. Invariably, though, one, if not both, of his hip-slung carrying cases winds up empty, and helping him retrace his steps goes something like this:

Joe: “Did you see where I put my glasses?”

Me: “Nope. Where did you have them last?”

Joe: “On my face.”

Those older ATMs, the ones where you insert your card in the machine, were a cruel joke for my dad. For some reason, he never caught on that the loud, methodical beeping at the end of the transaction was a reminder to grab your card. I can’t count how many times he’d go out to get money only to return with no card, cursing under his breath, because the machine sucked it up.

And it’s not just memory loss that gets the better of the Garcias. We have an uncanny knack for offending folks just by being ourselves, getting all the family gossip wrong, and landing in the most bizarre situations.

Take my uncle Tony, my dad’s younger brother. He’s gotten peed on by a Tiger, once choked a cab driver in Italy he thought was trying to cheat him, and is convinced that a rooster on the farm where he and my dad spent their summers as kids wanted to kill him.

This is the same uncle who wears a one-piece adult-size snowsuit indoors during winter because his historic home in Germantown, Pa., is too costly to heat. Get Joe and Tony together and forget about it.

When my cousin Calida and I moved to New York more than 10 years ago, our dads volunteered to drive the U-Haul. Why this was even allowed is beyond me.

this is exactly what my uncle's indoor snowsuit looks like

As October is Breast Cancer Awareness month, I thought it would be good to take a look at our awareness of how breast cancer affects a partner in a long-term relationship.

Needless to say, it is devastating to find out that your wife or partner has breast cancer – but what are the biggest issues, the best ways to cope, and are there any positives?

I spoke with Dave Balch and John InDelicato, both of whom have supported their wives through long and arduous journeys with breast cancer. They were both keen to stress that one thing that had helped them to cope was to be fully involved in their wife’s treatment, in finding out information, gaining second opinions and being there for each chemotherapy session. This had a huge impact on both their lives. John felt he had put his career on hold as his wife’s health had to come first; a decision which came with financial implications. Dave found it difficult to continue running a home based business, but had to find a way to do that in order to both protect the family income and meet the additional bills that cancer brings. These issues bring with them immense stress, which affects concentration in other areas. “My wife had the chemotherapy, but it was me who had the ‘chemo-brain’,” says Dave, describing the juggling act he performed with his work and managing his wife’s treatment schedule.

The kind of involvement that these men had with helping their wives get well takes an immense amount of time. Other responsibilities must be taken care of, with the help of others. For John this meant balancing his work, caring for his wife, assuming greater caring for his young children, sometimes accepting the help of loving friends and family; for Dave there were the demands of a business, planning his wife’s care and an extensive menagerie of animals needing loving attention. The advantage of this involvement, though, is a deepening of their relationships. Both got to know their wives at a level most of us hope not to have to reach, and they were in awe of the spirit, humour and courage these women displayed.

Breast cancer also brings with it the inevitable issue of sexuality. In a healthy loving relationship, self-image has a large part to play in intimacy. As a woman, I am aware that my breasts affect my image of myself as a sexual being – and so I can imagine how losing those breasts would challenge that self-image. John’s wife Donna had undergone a double mastectomy as a result of her second bout of breast cancer, and been told that her slight frame meant there was no option of reconstruction. As a couple, they felt they had put this behind them, just being grateful for Donna’s survival. There were times, though, when Donna would be distraught at the lack of ‘a bump’ for her clothes to hang from. It was with amazement that they then discovered the option of reconstruction using donated tissue known as Alloderm. There was no question for them as to whether Donna should go ahead with the procedure, and the results have been fantastic. “I feel that I’ve got my whole wife back,” says John, “and I can tell she feels the same from the feisty looks she gives me.” John would encourage other husbands to support their wives in having reconstructive surgery, but not for their own needs. “It’s 90% for the wife, as it allows her to put a full stop on her cancer experience and gives closure.”

One thing that’s for certain is that life after a wife’s breast cancer will never be quite the same again. There will be a ‘new normal’. The quality of this new normal depends on the way the husband coped during the illness, and how well the couple communicated. There can be an immense amount of learning and growth in this journey. John found that he had grown in his ability to deal with and speak about his emotions. Dave felt that the coping skills he developed were so important that he will be sharing them through his soon to be launched Coping University (www.copinguniversity.com), which will support anyone coping with serious illness in themselves or their family. It seems that ‘life is the best teacher’, and many will be able to benefit from the insights he gained.

By Shawn Kennedy, MA, RN, AJN interim editor-in-chief

by obo-bobolina/via Flickr (Creative Commons)

The other day I saw a news report from Reuters noting that a study in the journal Science found that a retrovirus linked to prostate cancer may be implicated in chronic fatigue syndrome (CFS).  The report explains that researchers “found the virus, known as XMRV, in the blood of 68 out of 101 chronic fatigue syndrome patients (67%). The same virus showed up in only 8 of 218 healthy people (3%).”  The hopeful take-away message is that IF this virus does have a role in the development of CFS (and that’s still to be proven—all that can be said now is that this study found it to be predominant in people with CFS in comparison to those without CFS), then researchers can develop medications to treat this disease.

But what I took away was a different message.  I remember when CFS was considered one of those nebulous, often self-diagnosed syndromes that led health care providers to attach some skepticism to whatever a patient who claimed to have one of them might say. There have been other diseases or clinical problems that have been dismissed by clinicians only to be verified later—fibromyalgia, restless legs syndrome, and “chemo brain” (the cognitive difficulties that often occur after chemotherapy; though a complaint of patients since the 1970s, it has only recently been verified by research) come to mind. There’s also another one, Morgellon’s Disease, the existence of which is now being researched by the CDC. 

We’ve finally accepted the premise that pain is what the patient says it is.  Why shouldn’t that extend to other complaints?  Why is the burden of proof on the sufferer?

As clinicians in an evidence-based environment, we look for physiologic changes that can be screened, measured, palpated, auscultated, and monitored—we want to see or verify symptoms for ourselves.  If you practice long enough, you’ll have at least one story about “that” patient who no one listened to—the one who, regrettably, someone should have listened to.  Do you have a story to share?

That would be me.  I have several blogs, in fact.  There’s the invitation-only cancer blog where I’m supposed to be sharing the details of my life-as-cancer-patient with friends and family, there’s the now-defunct running blog that is defunct because I’m not exactly running, and there’s the silly world-through-the-eyes-of-my-dog blog.  But, this is the one I post on most often.  Why? I’m not sure.  I started it because strange as it is, there were some things I didn’t want to say on the password-protected one that my friends and family read.  Maybe I’m protecting them in a way, or maybe this is my way of protecting myself.  I haven’t told them about this one – with some clever searching they could find it, but I haven’t told them about it.  Anyway, I think maybe that’s why I keep coming back to this one.

I came here with a reason today, but that reason escapes me at the moment.

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Interesting.  I logged on to write that entry last night, and apparently while I was trying to remember the reason for my post, I fell asleep.  It was a lovely 3 hour nap on the couch, but that resulted in not getting any work done last night.  Here in the busiest week of the semester thus far I NAPPED for three hours!  It was great but possibly not the smartest thing.

Maybe at the end of this week I’ll have something to say with a little more substance.  I never did remember what I wanted to post about last night.

“…so I came home and the purse was hanging from the back of the chair! I know you’re not going to believe me!”

Mom is emotionally off the scale, again. She’s reached new heights, even for her. I’ve never heard anything like this. I think she genuinely believes that the purse was stolen and magically appeared on the back of the kitchen chair, contents intact, in a locked house with an alarm system, while she was out driving.

While she was out driving. This is the thing that’s scaring me to death. Her doctor has instructed her to not drive. Her reaction time is way down, at the very least. She’s already having serious trouble driving, and this round of chemo has slowed her reflexes and dulled her decision-making abilities even more. Quite simply, she should not be behind the wheel of a car.

As if that wasn’t clear enough to me already, the conversation we had about it brought it home even harder.

“I didn’t drive!”

“You went to the mall. You drove.”

“It’s only a mile and a quarter. It’s not like it’s really driving!”

We spent 20 minutes arguing about when driving actually becomes driving. She honestly believes that only going a short way isn’t REALLY driving.

“I promise I won’t drive,” she told me, as though I’m too stupid to understand that the mall and the supermarket and the bank and restaurants and several friends’ homes are all within the “not REALLY driving” range.

“You don’t understand what you’re taking away from me!” she yelled. “You don’t know how hard it is!”

I do know. “I’m not taking anything away, mom. The doctor already did. And it’s temporary. And if you think it’s hard now, wait until you get into an accident and you get the blame because you’re under driving restrictions.”

“I’M NOT GOING TO GET INTO AN ACCIDENT!”

How nice it would be if that were true simply because we say it is.

As for the purse, I always said it was in the house. And I don’t believe for a second that ghosts put it there, or that someone got into the house after they changed the locks.

The explanation I’ve come up with, and the one I choose to believe, is that she’s sleepwalking. She stashed it somewhere Saturday night while sleepwalking, and found it and put it on the chair last night while sleepwalking, and that’s why she has no memory of how it got there. It’s a long shot. It’s almost certainly not true.

But the alternatives are even more difficult to consider.

Right now, I am at the Monter Center having my treatment, so I thought I would say hello to all of you and write about a topic that has been on my mind. 

Yesterday I was having a conversation with Letal, my daughter about Chemo Brain.  She asked me if it was real.  I said it most definitely is.  Although my kids think I am always loosing it and contribute that to getting older, now I do believe that I suffer from chemo brain. 

I will share with you what happened the other day.  I went to Waldbaums on Friday to get some things for Rosh Hashanah dinner.  I was buying challah bread and a blueberry pie, when I saw a pumpkin pie.  I got a little confused about the pumpkin pie.  I knew we ate it for a holiday, but couldn’t figure out which holiday.  I knew it did not fit in with Rosh Hashanah or Yom Kippur and for those few minutes I felt lost, no being able to remember what holiday comes next and would go with pumpkin pie. A couple of days later, I realized what my brain was searching for was Thanksgiving.  Wow, I couldn’t remember Thanksgiving!

For those of you who have probably never heard the phrase Chemo Brain let me give you some first hand insight.  Chemo Brain can be defined as a mental cloudiness or being in a fog. You might try to remember something, but just can’t figure it out. It is a result of the chemo and the drugs taken for the side effects.  During my treatment, beside the chemo drugs themselves, I take steroids, a few different anti-nausea drugs, Ativan and Zanax for anti-anxiety, vitamins B6 and B12 for neuropathy, Prilosec for indigestion and heartburn, blood pressure medication since the chemo and steroids have now given me a little hypertension, neurontin for hot flashes and neuropathy, and of course my cholesterol medication and synthroid for my thyroid.  Are all of these drugs necessary, YES.  They all work on something to get me through and direct me towards getting healthy.  But with them all, comes that non-clarity of chemo brain.

The pumpkin pie story was just one of many that has happened to me that validates this whole chemo brain phenomenon.  My friend Katie told me about her dealings with it as well.  Please, those of you who read this blog and have dealt with it, share your story.

I was headed for the registers at Target when my phone rang. I almost dropped the phone when I saw it was my father calling me. Other than pre-arranged calls from the doctor’s office, I don’t think he’s ever called me.

I answered and heard my mother’s voice. Mom calling me from dad’s phone… if anything, that’s worse. “Hi honey, how are you?” she casually asked.

I skipped the polite stuff. “What’s wrong?”

She hemmed and hawed for the longest few seconds of my life, and finally howled “My purse was stolen!”

She continued without pausing to breathe. “I’ve had to cancel the credit cards, we just came from the bank, we had to close all the accounts…”

I interrupted “Were you hurt?”

It took about 20 minutes of questioning, but no, she wasn’t hurt, and we can’t actually say for sure that the purse was stolen. She doesn’t know where it is. She thinks she forgot it on the front step last night, and she’s furious at herself for being so stupid.

My argument is that 1) dad saw her take it into the house and 2) no charges have been made on the credit cards. I think she has it in the house somewhere, but it’s fallen behind a piece of furniture or she put a jacket or something on top of it.

This has been well over two hours of discussion between me and my mother, and hours of frustration changing locks and closing accounts for my father.

A few months ago mom lost $600 that she says she won at the casino. I spent hours telling her that she’d misplaced it and it would turn up. She spent hours yelling that she was stupid and she’d left it easily accessible in her purse and someone had stolen it and she lost my birthday present. I told her I’d much rather have her happy for my birthday, but that was ignored, too.

A week later the money appeared. She promised she’d never doubt me again.

Now I’ve reminded her of that, and she yelled at me to stop bringing that up, I was right that time but I’m wrong now. And she’s stupid and everything is her fault and she deserves all of this.

If I ever meet the nurse who told mom that chemotherapy will make her emotions too powerful to control, I swear my emotions will be too powerful to control.

“I didn’t know it had to be refrigerated!” mom howled.

“It’s no big deal, we’ll just find out if it has to be replaced,” I told her.

“It’s going to cost $1300 to replace it! I’m not paying for that! They should have told me it needed to be refrigerated!”

“Why would they know it needed to be refrigerated?” I asked.

“They had to go to the refrigerator to get it! They should have told me then!” she yelled.

Pause.

“Mom, you watched them go to the refrigerator to get the prescription and you didn’t know it had to be refrigerated?”

Longer pause.

“They should have TOLD me! I FORGOT! It doesn’t say ANYWHERE on the package!”

We’ve been through this before.

“Call the pharmacist,” I told her. “Be sure it’s the pharmacist you’re talking to. Ask if it’s still OK to take.”

“I DID!” she yelled. “He doesn’t know!”

“Call the doctor.”

“He told me to call the pharmacist!”

We played 200 questions. The pharmacist called the manufacturer, Mylan, and has left several messages. It’s been two days and no one has called back. The drug is Etoposide. She left it out overnight and put it in the fridge in the morning.

“I’ll call,” I told her.

Mom wailed that they won’t call me back either and she’s not paying $1300 to have this drug replaced.

If you’re new to this blog you should know that while my mother was always a bit on the emotional side, this hysteria is new, a side effect of the chemotherapy. And the mistakes and confusion are symptoms of “chemo brain.”

I called, listened to the entire phone menu instead of picking the first obvious choice, and pressed 6 for “other questions.” Sure enough, an actual human being answered the phone. I explained the situation.

“Etoposide has been tested and the potency is unaffected by up to three months of storage at room temperature,” she told me without pausing to look it up. This would seem to be a common question.

Well, that was tough. I’m not sure what mom’s pharmacist is doing, but it took me less than three minutes to get a clear, direct answer. And I have no idea why that can’t be printed on the patient information sheet for the drug–or maybe it is, and mom missed it.

And mom has spent the past several days in a low grade panic, repeatedly replaying a vision of having to shell out $1300 for replacement drugs.

On that happy note, mom is starting the next round of oral chemotherapy, several days late.

I keep saying that I consider myself lucky for a variety of reasons. My lack of side-effects is definitely one aspect of this process that I am very grateful for. I kept my hair (although I didn’t really care about that). My nausea is manageable. The fatigue is getting worse, but it is also under control. I don’t have mouth sores or much pain. The Neupogen shots suck…but again, bareable.

Oh yeah, and I have a curable cancer and I’m in remission. And that’s been pretty good news, too.

As I continue through the treatment process, one part of me that I realize has been suffering some pretty major side effects is my brain. Or my mind? I don’t really want to get into figuring out the difference. Let’s just say – the chemo has affected my ‘thinking bits’.

Its called ‘chemo brain’ and I finally looked it up on the Interwebs.

Difficulty focusing? Check.

Difficulty multi-tasking? Check.

Periods of fogginess? Check.

Depression and anxiety? Check.

Feeling that I’m being hunted by the Care Bears? Not chemo related, just something left over from my childhood.

Freaks.

Between my mounting fatigue, my wandering brain, occasional bone pain and all around having cancer – I’ve been trying to cut myself a break.

The meditation classes are teaching me to live in the moment – not worry about the past (“Boy, did this summer suck”) or worry about the future (“How many more chemo sessions do I have?”). But focus on what’s happening right now. Which, if you pay attention to the present, it usually isn’t that bad and really you should stop your complaining because your co-workers are tired of hearing about it anyway.

My goal has always been to come out of this better than I came into it. Stronger. Better. Healthier.

I’ve already felt the effects of my heart opening up more. For friends and family. The kindness of strangers. A deeper appreciation of how fragile life can be. And I can’t even describe what my heart feels for the woman who has held my hand through all of this.

But one thing I’m only starting to realize is that my mind might be stronger for going through this process. If only because I’ve had to explore its weaknesses.

The pain I feel in my body has been manageable. But the weaknesses I’ve felt in my mind are less fathomable. After all, its my mind that keeps walking me through the door to the doctor’s office. Its my mind that wants to punish me when I’m too tired to blog or write or take photos. Its my mind that goes from foggy to lucid to muddled all in one afternoon…but always manages to find its way back again.

I’m looking forward to having my mind back. I think we make a good team. And I’m looking forward to putting it to good use soon.

Now that I’ve gotten the call that I’m in remission and I’m starting to focus on the next steps in my treatment, I see there’s plenty of time for work and problem solving and creativity coming soon.

For now, there’s a lot of Facebook Scrabble to play, movies to watch and sunsets to appreciate. And I’m okay with that. I’ll cut my mind some slack.

Because soon, its back to business.

it’s hard for me to blog wen i’m home from the hospital, have chemo brain and family staying with us to help.  so, this morning i snapped a bunch of garden pics for my twitter feed.  check those out here and follow me on twitter, subscribe to or watch my twitter feed, “tweet, tweet” on the sidebar when you’re waiting for me to blog.

(cross posted from Coffee and Chemo
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The magic number for cancer seems to be 3.

So far, all my chemotherapies seem to be based on 3 week cycles (with the exception of the bone drugs, which are on a 4 week cycle).

Today, I completed the first 3 week cycle of Xeloda and Tykerb (Lapatinib).

Xeloda is taken every day, twice a day, 4 pills each time, for two weeks straight, then one week off.

Tykerb is taken every day, once a day, 5 pills each time, for the entire three weeks.

I meet with my doctor tomorrow to evaluate the first cycle.

I imagine things will continue pretty much the same for the next cycle.

I am super tired, but I do not know if that is from this regimen, or the radiation, or the previous chemo, or the Bar Mitzvah, or having a house full of guests for almost a month, or the beginning of school, or whatever. There are so many possible explanations; I don’t even know how to figure it out!

Besides that, I have the following side effects:

1. Low appetite (not the worst thing for me at this time)

2. Mild nausea (not too bad; no need for drugs)

3. Mild stomach upset — sometimes constipation, sometimes diarrhea (not too bad; when necessary, I take drugs to prevent diarrhea)

I am also very thirsty, but it might just be the heat.

I had a week of migraines, but they might have been because I was not drinking enough.

I keep forgetting things. That might just be because I have a bad memory. I feel like it is getting worse, but I cannot tell for sure.

I am still bald. I am getting used to it, but I still wish my hair would start growing back.

The bald thing is really hard on my kids.

I am in a bit of a slump emotionally. It could be from the whole brain mets thing or from my family leaving. Who knows?

I am so tired of having cancer. I hate the way it sucks up my energy.

For every hour of activity, I need three hours to recover. (There it is again, the magic number)

I just wish I did not have cancer.

I want it to go away.

The longer I live with the cancer, the more I am forced to face the fact that it is not just going to go away.

Tomorrow, I have to start taking all those pills again.

I hate it.

Please pray (or send happy, healing thoughts) for RivkA bat Teirtzel.

With love and optimism,
RivkA

     Portland Firefly is having a difficult time with Chemo this session.  I returned from a much anticipated and well enjoyed trip to Central California on Sunday afternoon.  Monday I had my Doctors visit followed by my Chemo session.  Tuesday I felt a little tired and stayed close to home, catching up on some laundry.  On Wednesday, I just wanted to sit around and still didn’t feel like getting showered or dressed.   I took a nice long nap in the early afternoon.

     Thursday morning, I said “Enough of this!” and got dressed (but still didn’t feel like taking a shower) and took a short walk around the neighborhood.  I then headed out to the grocery store for some fresh fruit and popscicles.  Even though I took my expensive anti-nausea pill, I still felt quite quesy and it was all I could do to drive to the store and get the few essentials that I needed before I hurried back home.

       When I returned home, the smell of the beans that I had put in the crock pot to slow cook all day really bothered me a lot, so I unplugged the crock pot and took it outside.  I have a lovely covered patio and fortunately there is an electric outlet out there.  So I just plugged the crock pot into the outlet on the patio and the beans will cook and the smell will stay outside and not bother me!

    Since I’m pretty sensitive to smells this day, I’ll probably cook my rice in the rice cooker outside on the patio, as well.  My energy level is low and my brain is a little foggy today, so even though there are several phone calls that I want to make, they will have to wait for a few days.

    On the way to the grocery store, I listened to “The Procession of the Nobles” by Rimsky-Korsakov which is my”Chemo Music” for killing off my cancer cells.  This music is so stirring that it always increases my energy level…but not today.  It is as though I was listening to it through a fog and I was hardly aware of it.   But I consciously reminded my body, that it could hear the music and that the chemo drugs knew their job was to kill off all the cancer cells they could find.  I also reminded the cancer cells that they want to “come out” from hiding and go see that beautiful music.  They will then be neutralized and I will be cured.  I listened to it over and over again while I was driving to the store and on the way home.

PS:  I forgot to get Ginger Ale on my trip to the store and later that day I was so nauseated ( even after taking my nausea drugs) that I had to call  my neighbor.   Every time I have seen him since my diagnosis 5 months ago he reminds me to ask him if I ever need anything.   Well, this afternoon, I needed ginger ale and was too sick to go out.  I called him and he returned a few minutes later at my front door with not the one 2 liter bottle I had requested, but with 4 two liter bottles of ginger ale!   He even insisted on opening the first bottle for me –I was too weak to open it myself.   After two large glasses of ginger ale, my stomach finally started to settle down and I felt a lot better.  Amazing stuff –ginger!  Thank you, Mitch!

As if we didn’t already have enough reasons to want to avoid chemotherapy–now they tell us that it can also cause “prolonged effects” with memory and concentration problems known as “chemo brain.” It is medically termed “chemotherapy-induced cognitive impairment.”

Some researchers are finding that there might even be a connection between chemotherapy-induced cognitive changes and DNA damage in breast cancer survivors.

More confirmation for me that I made the right choice to skip radiation and chemotherapy (and especially hormone therapy–see my previous blog on this point here) after my breast cancer surgery. It’s been nearly a year since diagnosis (Sept. 15, 2008) and some might be skeptical and think me foolish for not going the medical route, but I’d rather use what nature has provided than these very un-natural methods promoted by the medical establishment and big pharmaceutical companies. (Read my personal story here.)

Here’s the article from the NY Times I referred to:

The Fog That Follows Chemotherapy

By Jane E. Brody, NY Times, August 4, 2009

As more people with cancer survive and try to return to their former lives, a side effect of chemotherapy is getting more and more attention. Its name is apt, if unappealing: chemo brain.

Nearly every chemotherapy patient experiences short-term problems with memory and concentration. But about 15 percent suffer prolonged effects of what is known medically as chemotherapy-induced cognitive impairment.

The symptoms are remarkably consistent: a mental fogginess that may include problems with memory, word retrieval, concentration, processing numbers, following instructions, multitasking and setting priorities.

In those affected–and doctors at this point have no way of predicting who might be–it is as if the cognitive portion of the brain were barely functioning. Symptoms are most apparent to high-functioning individuals used to juggling the demands of complex jobs or demanding home lives, or both.

The chemo brain phenomenon was described two years ago in The New York Times by Jane Gross, who noted that after years of medical denial, “there is now widespread acknowledgment that patients with cognitive symptoms are not imagining things.”

Some therapists have attributed the symptoms of chemo brain to anxiety, depression, stress, fatigue and fear rather than direct effects of chemotherapy on the brain and hormone balance. Yet when such factors dissipate, the symptoms may not. Recent studies that took other influences into account and analyzed how patients’ brains worked before and after cancer treatment have shown that cognitive effects of chemotherapy are real and, for some, long-lasting.

There are now two new books on the subject: “Chemobrain” (Prometheus Books), by Ellen Clegg, an editor at The Boston Globe, and “Your Brain After Chemo” (Da Capo Press), by Dr. Daniel H. Silverman, a leading researcher in the field, and Idelle Davidson, a health journalist and former breast cancer patient. Dr. Silverman heads the neuronuclear imaging section at the University of California, Los Angeles, Medical Center.

Ms. Clegg’s book, the more technical of the two, delves into details of research and may confuse readers about the validity of her subtitle, “How Cancer Therapies Can Affect Your Mind.” The more user-friendly book by Dr. Silverman and Ms. Davidson, subtitled “A Practical Guide to Lifting the Fog and Getting Back Your Focus,” acknowledges the controversy but cites both anecdotal and research reports showing that the problem exists independent of other factors that can beset cancer patients.

One Woman’s Symptoms: Barbara D. Wick, an insurance consultant in the Chicago suburbs who has been in and out of treatment for ovarian cancer for six years, says her cognitive problems have subsided somewhat since her last round of chemotherapy ended six months ago. Among the symptoms she experienced were these:

• Inability to focus on anything with any complexity or depth.

• Inability to retain information, especially names.

• Difficulty retrieving words and substituting wrong words (“chicken” for “kitchen”).

• Difficulty analyzing anything other than simple questions.

• Inability to follow instructions when cooking or knitting, for example.

In their book, Dr. Silverman and Ms. Davidson quote a photographer treated for breast cancer at age 34, who said: “Task completion is where I’m most affected cognitively. It’s as if the follow-through feature has been removed from my brain.”

Another patient, Patrick, a diagnostic radiologist treated for non-Hodgkin’s lymphoma at age 58, had to quit his job when he realized he was making mistakes.

“I would lose my place and have to go back and start over with an exam,” he said. “I tried to explain a procedure to a patient and I got very confused.”

At the supermarket, Patrick and his wife put groceries in the car, then he drove off without her. He forgot pots on the stove until the smoke detector went off.

Upset by the loss of his former self, he contemplated suicide. After psychiatric treatment, the depression lifted, but the confusion did not.

It is not yet clear what happens during cancer treatment to cause symptoms of chemo brain. Some experts think some anticancer drugs could have direct toxic effects on neurons, although most drugs do not penetrate the blood-brain barrier. Some evidence from animal and human studies suggests that cancer treatment can cause biochemical or anatomical changes in the brain, or both.

Dr. Silverman reports that metabolic imaging studies have shown that “people exposed to chemotherapy have impaired brain function in certain regions compared to others who have not been exposed.”

Tim Ahles, director of neurocognitive research at Memorial Sloan-Kettering Cancer Center in New York, is looking into a possible relationship between chemotherapy-induced cognitive changes and DNA damage in breast cancer survivors.

Several symptoms of chemo brain resemble effects of estrogen loss after menopause caused by surgery. Since treatments for breast and ovarian cancers can suppress the production or action of estrogen, loss of estrogen may account in part for chemo brain in women.

Hormonal changes can also occur in men undergoing cancer therapy. In a study of men with prostate cancer treated with drugs that depleted androgens, treatment with an estrogen improved their performance on memory tests.

Controlling for brain function before cancer treatment begins can help determine cause and effect. In one study, cancer patients took a battery of neuropsychological tests before starting chemotherapy, three weeks after completing treatment, and again one year later. Although a third of the patients had signs of cognitive impairment before therapy began, the number jumped to 61 percent after treatment, and half remained impaired a year later.

AUGUST 5: NEW YORK TIMES: As more people with cancer survive and try to return to their former lives, a side effect of chemotherapy is getting more and more attention. Its name is apt, if unappealing: chemo brain. READ MORE>

Today was mom’s rescheduled doctor appointment. She missed one last week. She called the office late Thursday morning to ask if she had an appointment on Friday, and they told her no, she’d had one that morning.

Hey, I’ve done that.

So she went today and got a Procrit shot. I know she hates those, and when she told me how run down she felt last week I didn’t tell her she’d probably get one today.

And that’s the good news.

She’s definitely not telling me things. She mentioned something about wanting to get a new car, and from that tiny foothold I managed to climb through several versions of stories about what happened to her old car.

If I take her at her word, the brakes “didn’t stop on a dime” and so she “tapped” my grandfather’s garage door as she backed into his driveway. There was “no damage at all” and the brakes were “adjusted” by her mechanic and “they work fine now,” but those pesky “new brakes” (anti-lock brakes) “never stop on a dime” anyway, but now they’ve been “adjusted” and they work and she’s perfectly comfortable driving the car and it’s “trivial” and why am I “making a big deal out of nothing?”

The more mom’s voice rises in both pitch and volume, the more I know that this IS something big, and she really doesn’t want to talk about it.

And I also know that the damage to the door was pretty bad. I guess she thinks I’ll be afraid to ask my father if she yells at me.

She also hit my grandfather’s car, but somehow completely forgot to mention that. I didn’t bring it up.

Still, “what do you want me to do, HIRE someone to drive me?”

Actually, mom, yes. That would be lovely.

Please, please, let this be chemo brain.

“Why am I here?”

 You would not believe how many times I say this these days.  No, I don’t mean that I’m getting all philosophical on you.  I’m talking I get somewhere and really don’t know why I’m there.  This happens almost every time I go to the garage.  My garage is where I keep glassware, canning supplies, and other kitchen related items that I don’t have room for in the house.  It’s also the home of our two big freezers.  So I go to the garage at least once a day.  And nearly every time, as soon as I step inside I say, usually out loud, “Why am I here?”  The garage sits about 20 feet from the house, which apparently makes for just long enough of a walk for me to acquire amnesia these days.  The problem is not that the required information doesn’t stick.  Oh, it’s in there, but good luck retrieving it!  Usually, within a minute or so of asking myself why I’m there, and after the application of much concentration, I’m able to remember why I came.  But not always.

 I try to warn people that I don’t remember things, but they don’t seem to get it.  They say things like, “I’m the same way!”  Ha, ha—no, you’re really not.  Thanks to tamoxifen, I just lose information in my brain somewhere.  It’s like my brain is the junk drawer of my body or something.  Sure, what I need is in there somewhere, but I’ve got to mentally dig through a bunch of twine, pencils, scotch tape, and a nut cracker to find it. 

 Two weeks ago I was driving into town to take Mini Me to piano lesson.  In a deviation from the normal routine, I was planning to run by Goodwill before hand and drop off some items.  So, we ride into town, pass the turn to piano, and head for the Goodwill.  Except as we approached the intersection where I’d need to turn, I suddenly did not know what I needed to do.  “Do I need to turn here?  I don’t remember where I’m going. Where am I going? Think, think, stupid brain, where am I going?”  Tick tock tick tock.  Finally, at the last second I remembered, “Oh yeah, Goodwill,” and made the left turn.  Then last weekend, I was getting ready to open a can of tuna.  I carried the tuna over to the drawer where the can opener is kept, but when I got there I just stared at the contents of the drawer.  “What am I looking for?  I need…something.  I must need it out of this drawer since I opened it.  What am I doing?  Uh…opening a can.  And what’s the tool I need for that?  Uh…”   Really, it should not take so much effort to remember that you need a can opener to open the can you are holding in your hand.

 Either of those things ever happened to you?  Probably not, unless you’re on tamoxifen.  They never used to happen to me, either.  Thankfully I have both a sense of humor and a supportive spouse.  A big reason why I‘m able to laugh at these incidents is because I cling to the assumption that once I’m off of tamoxifen, everything will go back to normal.  But it’s not all bad anyway, because like I said I have a supportive spouse.  Hubster has been great about recognizing that the tamoxifen has caused memory recall issues for me.  So, what’s he gonna do, get mad?  No, because I can’t help it, right?  I’m not forgetful because I’m an insensitive and self-absorbed lout who is too wrapped up in herself to remember to pick up Hubster’s toothpaste at Walmart.  Nope, it’s the drug’s fault–I’m handicapped!  And while I would never, ever exploit this, it does offer a certain advantage for those times when I am just an insensitive, self-absorbed lout who got too distracted by a new bottle of nail polish to remember the toothepaste.

There haven’t been too many haters show up here.  Except for Jamie, the person who told us all that we were collectively lame and needed to “get real” because we made fun of breast cancer Barbie.  Funny, I haven’t heard a peep out of ol’ whatsherface since I explained that I’ve got a 10 inch scar across my chest that gives me the right to dis’ BC Barbie all the livelong day.  Of course, it could be that she was just so disgusted by our fun that she’s never come back.  But I like to think that it was the verbal beat-down  she got that silenced her.  Take that, fun sucker.

 Sometimes, I write things that I know might provoke those humor vigilantes out there.  Of course, I do enjoy a certain amount of immunity.  You know, one of the perks of having The Cancer is the immunity you gain.  I think this may be rooted in the pity people feel, which would probably annoy me if I really thought about it, but I don’t.  I just enjoy the benefit. 

 In real life, the Cancer Immunity was way more powerful when I was bald.  Shoot!  You can get away with just about anything when it’s obvious you’ve got The Cancer.  If I were smart, I would have robbed a bank or held up Starbucks.  Chemo brain would have ensured that I forgot where I left the getaway car, and I’d have had to run away on foot.  Sure, I’d be easy to spot—you don’t see too many bald women running around with big bags of money slung over their shoulder (like a continental soldier)—but gee, can you see me getting arrested like that?  No way!  They’d feel too sorry for me. 

 But these days, I don’t get much protection from The Cancer Immunity, because it’s not obvious to the random person I run into.  Dang it.  I don’t want The Cancer, but I want Cancer Immunity forever.  I do get a little bit of that when I blog though, since the blog started because of The Cancer and I continue to talk a lot about The Cancer.  However, there is one fear that always looms over me when I post snarky things about breast cancer awareness: the fear of getting hated on by The Komen. 

 So, the other day when I got an email from Mildred Jones* with the subject line “Susan G Komen for the Cure” my mind flew immediately to all the smart-alecky things I’ve ever written about the pink ribbon, survivor walks, etc.  Oh crap.  It’s the Pink Mafia.  I’m in trouble now.  They’re gonna bring that pink ribbon cement truck over here and make me some new shoes to go swimming in. 

 I must just have a guilty conscience.  All Mildred really wanted was to see if I was planning to be a team captain at the Race for the Cure in October.  Guess she hasn’t read my blog after all. 

 *Not her real name, because like I said, I don’t want to anger The Komen.  Nothing to see here, Komen.  Move along.