I was sent the NY Times article on chemo brain the other day and had similar thoughts as you Leroy. I thought, "finally, someone is speaking reality". I'm currently in chemo treatment and am experiencing "chemo brain" quite a bit. I'm glad someone has brought it up, maybe it can be taken seriously now. This is one of the hardest things a person can go through, and to top it off you have chemo brain, where you have to make life altering decisions with a fuzzy head, along with all the other side effects that come with it. I hope some day treatment will involve a shot with no side effects, or laser technology. In the mean time, its nice to read some human-like stories about cancer.

Sent by Jenn | 7:03 AM ET | 05-01-2007

Good morning, Leroy! Thankfully I only forgot to buy eggs at the store yesterday, unlike the woman in the NYTimes article who, beset with chemobrain, bought a fifth gallon of milk, never remembering that she'd bought the previous four!

Thank you so much for the link to that great article. It was so timely for me. My husband has been asking me lately about more details regarding the cognitive and physical effects of the chemo. Now I can point him to the article and he can begin to get some clue as to how it feels. One woman captured it so perfectly saying: "My mind used to be a steel trap. Now it's a colander."

I used to be the one in the family who could remember everything. I could reel off scores of phone numbers, social security numbers, 13-digit library card numbers, all to everyone's amazement. The family all grew to depend on it, so I got to show it off quite often. Not any more.

I had to pull over in the car the other day, just to think hard to remember how to get to the pediatrician's office, someplace I've driven to many, many times.

The worst part of it is the insurance stuff. I spend hours on the phone with doctors offices, hospitals and lab companies trying to track down and sort out EOBs, dates of service, co-insurance, deductibles -- essentially, who pays what. It's a tremendous amount of detail, as you all know, so because of chemo brain I end up having to take copious notes on each and every phone conversation, just to try to keep track. Otherwise I have trouble recalling even one conversation. Before chemo, I could've easily kept most of it in my head.

Why is cancer news? I believe it's because everyone, including all those journalists who make the daily decisions on what to print/air, increasingly have people they are very close to who are going through this nightmare. I sorrowfully predict we'll see even more coverage.

Thank you doesn't really cover it, Leroy, for how grateful I am to you for this blog.

Sent by Jordis | 8:15 AM ET | 05-01-2007

.....FINALLY....finally, even if just for that brief moment ...someone out there is LISTENING to all of us! ...i feel as if i have been existing on a different planet..the "planet C" and i feel as though i have been living a very "sheltered" almost exclusive life outside of the "real" world for the past 9 months desperately fighting my way back "home". "my" chemo brain really throws me off at times...yesterday ..2 months out of chemo and i was in a complete fog as i tried to remember the story of sunday night's soprano episode!!! aaawww..life's little details...seemingly small to the rest of the real world but ridiculously important in mine!

Sent by marianne dalton | 8:38 AM ET | 05-01-2007

Hi Leroy,
I just finished reading the same article about "chemo brain". In our newspaper it was inside the front section but it was there.
I hope you had something really, really good at the bakery. Chocolate is a wonderful healer...for whatever ails us.
You remain in my thoughts and prayers. Our daughter is in the final few days of radiation for her brain tumor. We too will be playing the waiting and watching game.
Happy May Day....and remember, Keep Breathing!

Sent by Beth | 9:01 AM ET | 05-01-2007

Although chemo brain has its humorous moments, a lot of the time you try to remember what you said or did regarding something very important and have absolutely no recollection. Then later you find out that you said or did something you would not otherwise have said or done. Very scary.

Sent by Kirsten Mygil | 10:34 AM ET | 05-01-2007

I was wondering if it bothered you at all that it wasn't taken seriously at first because women were the primary complainers about the problem. Sure, "Yeah! They are talking about a real issue and listening," but it bothers me so much that because woman ask it is not taken so seriously until it is either affecting a large quantity of people and/or women.

Sent by TN | 10:47 AM ET | 05-01-2007

Hi Leroy and all,

Thanks, as usual, for this. I thought the most important thing said about the NYT article is that ??? ???. It did something much more important (than focus on statistics, research, etc.) It talked about what it???s like to live with cancer. It talked about the patients and what they go through. It talked about us.

Well, who can talk about us better than us? Even though few of us have a national stage, all of us have networks and more local audiences.

It???s time, I think, for more of us who are able to do it and are not blocked by job, mobility or other considerations to talk openly and, where the opportunity arises, publicly, about how our cancers affect us and our other commitments, concerns and interests?

If we don???t do it, who will? We can???t always depend on the NYT or exclusively on Leroy and various national figures. The major cancer organizations have agendas of their own, largely around research support, which is important, but is by no means the whole picture.

I was recently the only survivor who was on the podium at an Emory University conference on ???Changing the Way we Die??? ??? and one of the few who attended. Everyone else (250+) was a professional of one kind or another. I also spoke about my cancer and its impact at my church two days later. Both talks were very well received and may lead to other opportunities.

Is there interest out there in doing more of this from the survivor and caregiver perspective? Are others of you already doing this? What???s been the response? What gets in the way of doing it? I???d really appreciate some response/discussion on this blog

Thanks Leroy and thanks to all of you for your prayers, courage, thoughts and deeds.

John Shippee
Atlanta, Georgia

Sent by John Shippee | 12:06 PM ET | 05-01-2007

Cancer is big news and has been for many years. Sadly, it has often been overlooked. Would the sheer loss of lives to cancer be taken more seriously if fatalaties were reported daily like those in the Iraq war? I think the general public is largely unaware that cancer claims so many lives each and every day. It is through the news and blogs like yours that awareness, prevention, and early detection become a reality. There is still a stigma associated with colon cancer and many people don't even realize that family history and warning signs need to prompt an earlier than 50 colonoscopy. Many over 50 don't realize that this simple test could prevent them from getting colon cancer. Some that do would rather take their chances than risk the embarrassment. After 8 years of surgeries, chemotherapy, and a multitude of treatments and procedures I have adopted the motto "Colonoscopies are Fun!" The "Cancer Collage" and documentaries like yours are a great start in education. Congratulations....and thank you again for sharing your dedication, inspiration, and journey.

Sent by Suzanne Lindley | 12:15 PM ET | 05-01-2007

I have chemo brain, it has gotten better, but I still have my moments. It is more annoying then scary, at this point. Of course my wife thinks I use it as an excuse to get out of doing things around the house, and she is only partly right.

Sent by Brit | 12:40 PM ET | 05-01-2007

Well....so many have said it already (and said it so well), but I've been out of town and have just now read your post about the clear scan...So I MUST add to the congratulations myself!! I am sooooo happy for you and feel surely that it may have something to do with all the blog readers and copers who have you in prayer, well that can't hurt anyway. May I add my own news?? 2 wks ago I had my first follow up mammo and it was clear. A nice way to celebrate a new Spring. My best to you and all the listeners, readers, writers of this blog. from Sherri in Texas, breast cancer stage II, 2006

Sent by Sherri Eggleston | 12:59 PM ET | 05-01-2007

Dear Leroy,
I, too, read that article on "chemo brain" and wondered how or if it will manifest in my close relative, who was recently diagnosed with colon cancer. She is incredibly smart and quick, and the article gave me a "heads up" on what might happen. This whole blog has given me a "heads up" on how to help her best. Thank you for that. I have grown quite attached to you through your blog and the video clips with Ted Koeppel; I wish you many more years on this earth. Hell, I wish you decades more --
Sincerely,
Carolyn Benson

Sent by Carolyn Benson | 1:28 PM ET | 05-01-2007

Dear Leroy,

I have always had an incredible ability to recall information. But now we have a joke in our family when I slip up on details or have a hard time remembering what I am doing and more importantly, why. My teenagers say "Well, that's just because Mom's brain has been irradiated." Actually it wasn't my brain at all; it was my throat and neck. (I was diagnosed a year ago with pharnygeal cancer and underwent surgery and radiation.) So I read the "chemo brain" article with great interest and am now awaiting with bated breath for the "radiation fog" sequel. Even though radiation burns are site-specific (unlike chemo which poisons the whole body), I contend that cancer is cancer, and it sure as heck feels like one's entire body (especially the brain/mind) is under assault. Getting yourself out of bed everyday and putting one foot in front of the next, sometimes those are the only priorities you can focus on. So I guess my take-away from the article is, even though I am not in the chemo club, I now have a life-time membership to Cancer World, and the price of admission is a life-altering change to how my brain works and how I view this life and this world.

Sent by Peggy | 1:34 PM ET | 05-01-2007

My husband just passed away on April 3 from leukemia (ALL). He was a patient at Johns Hopkins for the past 4 1/2 years. His biggest complaint was chemo brain. It drove him nuts, he never complained about the drugs, needles, shots, hospital stays, etc., it was the chemo brain. It is funny how it only effected his short term memory, he could tell you about our vacation from 4 years ago however. Best wishes to all of the cancer survivors, god bless you. Deanna, Laurel DE

Sent by Deanna | 1:51 PM ET | 05-01-2007

I read the literature that went with my chemo, Gemzar, and it mentioned "cognitive side effects". I asked my doctor about them and he pooh-poohed, saying that if any one took seriously the side effects of aspirin, they would never take it. Still, I didn't think I had chemo-brain too badly from that, but I can hardly remember my month of radiation with 5FU and several anti-nausea medications.

Sent by Stephanie Dornbrook | 2:28 PM ET | 05-01-2007

Yes Leroy, thank goodness we are now coming to this-- the aftermath and results of Cancer and the treatment! As I have told you before, it is twenty four years since my experience with it but I have many "after effects" of treatment, too numerous to list here. But what troubles me most is that the doctors do not address the fact that some parts of you have been damaged or affected by those chemicals, especially since today's new drugs are much more refined than those that were given to me in 1983. Mind you, I am eternally grateful for those doctors, their care and those drugs. I am still here and have lived a pretty good life since.
However, why don't they keep records of their old survivors and record their progress? Wouldn't that help with understanding the effects of the treatments? I, for one, would gladly volunteer my experiences.
Looking forward to your TV program.

Sent by JC Rakowski | 2:38 PM ET | 05-01-2007

My experience with chemobrain has been mixed. I really miss being able to recall simple things & now I have to make detailed notes every meeting at work. On the other hand, I think it's made me a nicer person. When I used to hear people say they forgot about something, I thought they were just making a lame excuse & was pretty judgemental. Now I know it's a real possibility so I'm much more forgiving. (My husband appreciates the change.)

At first I would panic when I realized that I was lost again or couldn't remember a conversation that I knew had taken place. Now I try to take a deep breath & see if it will come to me. I'm getting more comfortable with the fog.

I took Focalin for 2 years & it was a big help. However, I sleep better without the Focalin in my system & rest seems important. It's been 4 1/2 years since I finished chemo & I keep learning that living the good life is all balancing act.

Sent by LJ | 2:38 PM ET | 05-01-2007

Leroy,

I think it is going to be necessary to focus MANY articles, discussions, interviews, and other communications on patients before all of us can come closer to accepting cancer as a disease instead of a shameful, unmentionable thing. Glad we're on our way.

Sent by Diana Kitch | 3:00 PM ET | 05-01-2007

I answered my clicker, took the wireless mouse in my purse thinking it was my cell phone, put the phone in the refrigerator and then lost my car in a multi level parking garage. I was convinced the cancer had moved to my brain. That was some day! I've printed that article to give to my children.
Oops the phone is ringing, gotta go find it!

Sent by Vikki Kramer | 3:05 PM ET | 05-01-2007

It is about time that we, the patients and survivors get to set some of the agenda. I am four and a half years out of treatment and still have chemo brain.

It frustrates me greatly that I am not able to give my best to my employer, family and community because I have to struggle to remember names and facts. I do all the suggested things, my calendar goes everywhere with me and I write everything down. But I miss the mental agility I used to have. I joke about it so that I won't cry about it.

There are long term effects to treatment, and I am supremely grateful to be alive to have them, just take my concerns seriously. But it is time the medical establishement paid attention to our concerns. They do seem to be listeining better these days, but we have to keep our concerns out there for them to hear.

Sent by Elizabeth Hendrix | 3:18 PM ET | 05-01-2007

I agree that cancer is news and not just the latest cure which makes people who aren't touched by cancer to think that it's not so bad. But cancer is news because it affects everyone around the one who has the dis-ease. And as for the chemo brain syndrome - why is that no one talks about the side effects that we have to live with. Maybe because the drug companies don't want to lose money.

Sent by Vicki | 3:32 PM ET | 05-01-2007

Cancer IS news! Just go any chemo room at any oncology clinic and see the many barcoloungers filled with patients. Then hang around for about 3 hours and watch the next shift arrive for their chemo. Until you or someone close to you is affected, most people have no idea about the incidence of cancer.

I have melanoma (Stage IIIb) and have had renal cell carcinoma (left kidney removed). I have tried chemo, radiation, a vaccine, 8 surgeries and now a drug to stimulate my immune system.

Cancer doesn't define me. It is a disease to be fought with any and all treatments available plus complementary medicine and most of all prayer. The thought of more recurrences lurks in the deep recesses of my mind but I don't allow it to be at the forefront until it must be.

Coping is different for each person and their caregiver(s) but cope we must. Thank you, Mr. Sievers, for your blog and for sharing your story. May God's mercy,grace and healing power be visited upon you and bring you peace.

Sent by Al Cato | 3:53 PM ET | 05-01-2007

I believe cancer is extremely underreported. Caregiving for elderly cancer patients is one important story for which I find very little coverage. Being that cancer and its treatments bring so many unknowns, the person in the role of primary caregiver faces tremendous challenges,especially if they are both considered senior citizens. My mom, 75, is being treated for mestastatic breast cancer that has spread to her liver, lungs and bones. Although the chemo is keeping the tumors and cancer at bay, residual effects, such as liver blockage, incapacitation from effects of whole-brain radiation, incontinence, etc, are realities and challenges faced not only the patient, but the caregiver as well. Medicare offers little resources and information for caregivers on where to turn and how best to deal with the unknowns of cancer and its treatment. And the general sentiment from friends and the medical community is that they are old anyway.

Sent by Lynne Rothschild | 4:21 PM ET | 05-01-2007

Interesting this post should appear today. A potential client walked in the door today, complaining of financial problems and seeking assistance (legal). Fortunately, we can help. What struck me was that by any statistical measure, her survival of melanoma for over a decade post-diagnosis is a huge success. Nevertheless, the human story behind the statistics is one of a person who lacks the stamina to work 40 hours per week or to make full use of her education. The chemo brain phenomenon played a contributing role in the cascade of events that led her to my office. Thanks for the human stories that are finding their way into the press, I better understood.

Sent by Alan | 4:35 PM ET | 05-01-2007

Leroy,
It's late. You're probably not going to get this today or maybe not at all but as a Stage IIIb colorectal cancer survivor whose had 4 surgeries, one reoccurance, an open wound for two years, chemo and conjunctive radiation, it's the power of the human spirit and the same thing that got you home from Iraq alive that is going to give you the best chance you have. My chances of survival grew exponentially less after the reoccurance but something inside me said I'm going to live through this. Two years clean I still come back from my oncologist with great relief at the news. Leroy, just know that some person out there (me) from the same frat house is sending you positive thoughts, healing thoughts and prayer. I'm not a hugely religious guy but prayer from any denomination helped get me through this. One last thought. There came a point when I had to say, "this is cancer but not my cancer. I don't want to own it."

Sent by Tim Nelson | 9:40 PM ET | 05-01-2007

Leroy,
Oh my! After being diagnosed with Acute Promyelocytic Leukemia four years ago my wife and I always joked about the "chemo amnesia" that I seem to have retained since. As a medical professional I live daily struggling to maintain a coherent train of thought while I can't recall the question I just asked a patient while they are still answering the question!
My daughter was born in the same hospital where I received chemo and I actually had my own blood transfusion going while helping deliver my first born child (my son LANCE is named for the man in the yellow jersey that dots our walls- I was told I was sterile after my chemo rounds). It is the joys and laughs they bring that helps me digest the daily toils of living with cancer.

Sent by Ehren Heyer | 10:47 PM ET | 05-01-2007

Chemo brain: every time I tell someone I have chemo brain they say, Oh at my age--I have it too. Almost dicounting my memory loss. I too used to be pretty sharp and oh so witty. I was a sales rep for a large company. I had to talk and remember what I was saying. Now, my son and husband say just take your time. I could take all the time in the world and still not remember some words. Like would you please put that pop in the thing that makes things cold.....(refidgerator)...or where did I put those things that start the car(keys). If I didn't laugh I'd cry or do that thing that makes water role down my face.......

Sent by Beth Morrison | 2:14 AM ET | 05-02-2007

Leroy,

First of all congratulations on a clean test. I am so happy for you. I can relate to your feeling of giddiness. Thanks for the link to the Chemo brain article. I can relate to that also. It is good to know that it is not just me. That was the first time I had read anything about the subject of chemo brain.

Sent by Betty in Germany | 4:21 AM ET | 05-02-2007

I wish people were as aware of the challenges of living with cancer as they seem to be of living with other childhood and adult disabilities, and the full spectrum of what it takes to do so. Chemo brain, neuropathies, major dental issues, MAJOR financial issues, stress on family relatioships. I think that to the unitiated, cancer is something people die of in comparatively short order (less than a year) or goes into remission. For the first time, I've noticed that some friends, family and colleagues begin to understand what my family's life is like given the media articles, Elizabeth Edwards and so on. My husband has been struggling with long-term chemo, surgery for perforated stomach and a whole host of issues for the last 2 years. Financially, our future is in the toilet. I am lucky enough to have a decent job (despite my caregiver absences), but he can no longer work, and gets a very modest disability check from SSI. That coupled with the rollercoaster of tests, treatments, side effects etc. is very, very hard on him, our 13 year old and me. Still, he's here and his personality is largely intact and most of the time he can pursue some hobbies and small home projects. I scarcely even talk about what our family life is like any more because I'm weary of people thinking I'm some sort of saint or similar. Boy am I ever not!

Sent by Teri | 6:16 AM ET | 05-02-2007

Chemo brain makes me overcompensate by writing down everything. I have "To Do" lists, "To Email" lists, "To Buy" lists, "Outdoor Project" Lists, "TO Ask the Doc" lists etc etc etc. They help .
And I keep all the lists in the same place so I won't lose them!

But I also have after 7 years of off and on chemo a noticeable lack of ability in recalling proper nouns... names of people, books read, movies seen, etc and it can be very embarrassing. Then too, when I put groceries away, for example, I will find things like the kleenex just purchased is somehow in the freezer and the frozen squash still out on the counter an hour later. It's funny at times and at others extremely annoying. If I were younger I'd be quite abit more bothered I think, because it makes it harder to negotiiate
your way in the world.

Sent by Nancy Oliveri | 6:57 AM ET | 05-02-2007

Im gratified that the NYT has devoted space to articles about living with cancer. I would like to see less use of the term "chemobrain". I believe this is part of the reason physicians and others "pooh pooh" it . When you use a silly name for a condition, it trivializes it. I always say "cognitive changes secondary to chemotherapy", "memory loss due to chemotherapy" etc. It is real and it needs to be taken seriously.

Sent by Kathy | 8:43 AM ET | 05-02-2007

Thank you again for your honest column. I was elated to see the NY Times Chemo Brain column. As a therapist and someone with metastatic breast cancer to the bones and part of an Advanced Breast Cancer group at the Wellness Community of Philadelphia (one of the first such groups in the country--people aren't dying quickly anymore!),
chemo brain is a common complaint among us--and others there with cancer.
Our son died 2 years ago from brain tumor--for 7 years since surgery and radiation, he suffered terribly from C.B. However, both of us had to deal with these symptoms before we started radiation--perhaps from the undiagnosed cancer itself? I am having to quit my position as CEO of a service corporation, because I cannot function effectively with these symptoms, like ADD-squared. I agree, drugs for cancer--and radiation--need to be re-evaluated. When will the medical establishment validate qualitative first-person testimony from the patients themselves? When they trust the patient as partner and consultant in their own care--a day too far off.

Sent by Morgan Henderson | 9:07 AM ET | 05-02-2007

Thank you for mentioning the NYT article...I'm two years out from ovarian cancer treatment, just turned 44, and I am just like the ovarian cancer survivor in the article. I find myself not as efficient and focussed as I was prior to chemotherapy and surgery and have maintained all along that my brain is worse NOW than it was during chemotherapy. You can't tell me that neurotoxic chemicals don't have long term effects on the brain--after all, just ask anyone with neuropathy from chemo. I'm thrilled to see that there is recognition of these issues that I can pass along to my co-workers and friends and family to help explain why I don't function the same way anymore. A friend pointed out that people with cancer are living longer now, and that is why these effects are showing up. That's a good thing. Now we need a new paradigm for treatment that recognizes all of the effects of living longer with cancer and living after cancer treatment.

Sent by Kitty Jungkind | 11:47 AM ET | 05-02-2007

Like Beth, Nancy and others, I am often unable to come up with the simplest words such as "refrigerator" or "keys." I have continued working throughout most of my chemotherapy, and since my job involves working with the public, it can get pretty awkward and embarrassing. I find myself looking ahead, trying to guess which words may cause trouble, leaving myself little notes, etc..Trying to cover up and appear normal, in other words. I do agree with Kathy that the cutesy name "chemobrain" keeps people from taking it seriously. And also, since I'm past 60, I imagine many people blame my lapses on aging. But it's on a whole different level -- my mind goes completely blank, as if it were stuffed with cotton!

Cancer survivors aren't the only ones to have such experiences or to realize that others have no clue what they are enduring. My father and grandfather both had Alzheimer's Disease and were cared for at home until their deaths. I find myself thinking a lot about how agonizing and lonely it must have been for them. And other relatives have had to deal with mental illness. Same thing -- people out in the "healthy world" are oblivious, but for these folks and their families, just to keep putting one foot in front of the other each day takes tremendous courage.

Sent by Doris | 12:11 PM ET | 05-02-2007

Leroy - thank you for your continued insight into the realities of having cancer. I found the lump in my neck three weeks after giving birth to my youngest daughter. I went straight from pregnancy brain to chemo brain and, almost a year later, have still not fully recovered. A friend sent me the NY Times article on chemo brain and it supported what I have felt for sometime - one of the worst parts of my treatment was not the chemo itself, but my continued inability to finish a complete thought or sentence. Fortunately friends, family and co-workers have gotten used to the perpetual game of charades that we are often compelled to play, with me inarticulately forcing the words out and them desperately attempting to decipher what exactly it is that I am trying to say. My one-year old is at that age where she is learning new words and trying to communicate her needs to the world. She is frequently more successful at it than I am. I guess I better make sure that she is on my team the next time a game of charades comes up.

Sent by Shannon Devereux | 1:33 PM ET | 05-02-2007

The coverage is fine but what worries me is that employers will now have even more fears about hiring cancer survivors. Many of us have lost jobs while going through our illnesses. The road back to the workplace can be difficult and one must sometimes be concerned what potential employers may find when they google us.

I also wonder how much of the "chemo brain" effects (regarding less-studied survivors, i.e. non breast cancer survivors) are from post-traumatic stress, depression, lifestyle change, and age. The symptoms can be difficult to differentiate.

Sent by glen | 7:00 AM ET | 05-03-2007

I was diagnosed in 1975 and received a year of chemo... it most definitely affected my memory.. I was 20 years old at the time and today I remember little of my childhood... and I think what I do "remember" is mostly what I have been told not that I necessarily remember it....

I am absolutely HORRIBLE at remembering names even today...

I do believe I "retrained" my brain after chemo and began, as someone else commented, to remember long numeric strings such as phone numbers and was once described as a "walking phone book" LOL

I do believe we regain at least some of the memory capacity and perhaps even some of the longterm memories...

Back when I was treated... memory loss was not even on the radar.. of course they didn't really expect me to survive so I suppose "longterm affects" didn't really matter anyway at that time...

Sent by Ronald K. Bye | 10:57 AM ET | 05-09-2007

Man, thanks for that NYT story link. I knew something was wrong with me!!!

Sent by Howard Dukes | 5:19 PM ET | 05-09-2007

I am in the Air Force. I went to Walter Reed for what I thought was a hyneria. It turned out to be testicular cancer. After one operation to remove the cancer and one of my testicules, my doctor says that I am cancer free. I still have to have alot of tests every two months for awhile, but I still feel that I am not a cancer survivor. I feel people that had to have chemo and radiation are the true survivors. Do you think that is a normal way of thinking? And thank you for being on the Discovery Channel. It has really helped me deal with cancer even today. Every day.

Sent by Kevin Day | 8:35 AM ET | 05-15-2007