Replacing What Chemo Brain Takes Away

Started by mike-verano, December 12, 2015
11 replies for this topic
mike-verano

Member
558 Posts
Posted on
December 12, 2015
It is only with the heart that one can see rightly; What is essential is invisible to the eye. - The Little Prince

Ask ten medical professionals whether or not chemo brain is real and you’ll likely get a variety of answers. Ask ten cancer patients and the response might be, “Wait, what was the question? Oh yeah, chemo brain. You bet it’s real!"

Whether it’s the result of physiological changes, chemical imbalances or a stress response, chemo brain remains one of the inheritances of facing the cancer challenge.

The American Cancer Society describes the following as reported symptoms of chemo brain:
  1. Forgetting things that they usually have no trouble recalling (memory lapses)
  2. Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
  3. Trouble remembering details like names, dates, and sometimes larger events
  4. Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
  5. Taking longer to finish things (disorganized, slower thinking and processing)
  6. Trouble remembering common words (unable to find the right words to finish a sentence)
Sadly, we cancer survivors are often measured by what we’ve lost to cancer. Whether it’s cognitive functioning, organs, body parts or even the illusion that we're invincible, cancer and its treatment, is fraught with minuses. Therefore, I would like to put something back in the space left by all the things taken away.

I’m introducing the phenomenon of chemo heart, CH for short. This condition manifests itself on the day we’re diagnosed and progressively spreads the longer we face the challenge. CH is a condition of increasing awareness of one’s true nature and the felt connection with the whole of life, characterized by:
  1. Remembering to appreciate friends and loved ones
  2. No trouble looking past small slights, slanders and insults
  3. No trouble seeing past life’s distracting minutia
  4. No trouble making one's primary task to enjoy life
  5. Taking one's time to linger over life's simple pleasures
  6. No trouble remembering to honor others who are also facing this challenge
Unlike its evil twin, chemo brain, chemo heart puts us squarely in the plus column. Additionally, CH is a bonding experience. Sit next to a stranger who has also been on a cancer journey and you’re family; tied together by the human bond of shared trauma, tears and triumphs. Perhaps the best news is that CH works below the level of thinking and therefore is not impacted by brain functioning. There's nothing we need to remember in order for our hearts to grow larger through the experience of a life-altering illness. 

This is not to say that CH comes to us automatically or that it can’t be distorted by other conditions. Let’s be honest, there is a time for the inevitable lament of “Why me?”

The grief that comes with any illness brings with it the inevitable four horsemen of denial, anger, depression and bargaining. CH does not erase these experiences. Instead, it allows us to hold these painful experiences in loving awareness with self-compassion. In the end, CH does not provide an answer to “Why me?” but it can remove the need for the question. 

Perhaps, someday they will find a cure (or at least develop preventive techniques) for chemo brain. If we‘re lucky, there will come a time when everyone is measured by the workings of their hearts rather than their minds and all will see what is truly essential. In that case, we cancer survivors will have a head start.
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annon123456

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Posted on
December 12, 2015
Pffff. Sorry. For me this still comes under the category of gotta make lemonade out of lemons or there is something wrong with you; some how having cancer gives you the inside track on being a better person; blah blah blah. Having been through 3 major cancers now, coming out the other side (although one of them has no cure), I have not experienced any of what you talk about. Cancer is bad crap you need to figure out how to live through, medically (hopefully) and emotionally recover from... and then keep living. I can see absolutely not one positive thing that came from having cancer, chemo, chemo brain, any of this crap. Glad putting a positive spin on everything you gain helps you. "Loving awareness"? Really? Seriously? To all of you who are reading this and wondering why on earth it is somehow required that cancer survivors or continued sufferers have to find a path that includes enlightenment after having had cancer, somehow appreciating that you have had it, are required to be pollyanna... trust me, there are are many of us out there who don't need to follow that path to be happy, emotionally healthy and move on from having cancer crap dumped into our lives. Take time, sometimes lots of time and frankly is a lot harder when you have a cancer with no cure (as is my 3rd cancer) but getting there does NOT require doing anything this article (and the zillions just like it) insist you must do, or state will happen as a result of having had cancer (so there is nothing wrong with you if you are sitting here shaking your head over why this article reads as irrelevant and/or irritating and/or feeling anything but what this article insists can be/will be the correct path...), etc. etc. etc. Having had or currently having cancer is no different than the extended experience anyone has when a big heap of bad stuff falls into their life. We don't have a monopoly on suffering due to our illness. It baffles me why somehow with cancer we keep getting the message, on some level, that we need to be grateful on some level because we will somehow be a better person for suffering. Makes me wonder why all the other bad diseases that can happen to people, bad accidents that can happen to people and temporarily or permanently take something away from them that is valuable, don't keep preaching this in all the various ways it gets preached in the cancer realm. Great if it helps someone. There is nothing wrong with you though if you think this is BS. There are plenty of us out there who want nothing to do with pink ribbons,attempts to make you have life long ties to cancer crap (although if you have one with no cure you have no choice), finding something good about bad crap happening, the rah rah rah crowd... For me cancer is what I had and what I have. It is NOT who I am. Who I am is what I do with my life. And other than getting in the way of some of the things I want to do and that it will shorten my life, cancer is, for me, not a path to enlightenment. My happiness is independent of this stupid f'ing disease. Yeah the emotional earthquake that goes along with getting that diagnosis is rough. Yeah it takes time to wrap your brain around it. Yeah in some cases there are life altering outcomes. But really, how is this any different in the long run than the polio and then post polio syndrome that disabled my dad and cut his life short? The polio crowd doesn't talk about this and those folks have learned how to cope and be happy with their lives. That is the key, I think, learning how to be happy even when bad crap gets in the way. The suggestions in the cancer area are pretty limited. Sure they help some people, but they need to be seen as a only one of a wide range of reactions/paths people take when dealing with a devastating disease that you may or may not recover from completely. I think it would be a lot more helpful for everyone if we acknowledged in a far more active way that gratefulness and/or learning lessons that will make us happier/better people is the only route to take to this happiness after a cancer diagnosis. Puts too much blame on people who are struggling if they can't manage to go down this path. Causes some to question what is wrong with them if this path is foreign. There are many other ways to go and most of them come to the same outcome - you some how come to terms with what life has thrown at you, figure out how to be happy again and keep on living (at least most of the time) in ways that you can successfully hold a tension between stuff that can't be undone that leaves a long term or life long impact and living your life without becoming fixated on what has happened; living your life in ways that you still experience some joy and happiness, even if you are going to die of this disease.
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Gobbler

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Posted on
December 12, 2015
Well, I guess I don't agree with the message above totally. Cancer has affected me in both ways..chemo brain AND CH. I am still EXTREMELY ANGRY about having cancer. I've been off of chemo for exactly 6 months today and still get periodic "blasts" of chemo brain for days at a time. On the other hand, I wake up every morning, thank God for being alive and move on with my day. Cancer has changed my life forever. Daily I live with the fact (3% survival rate) that this pancreatic monster may come back. Optimism tells me that "it might not come back". Bottom line, it's not up to me totally. It's up to God, good doctors, science and positive influences by family and friends. HOWEVER I must DO MY SHARE of the work to continue to live a healthy lifestyle, keep positive, and let the Chemo Heart flow. Anything POSITIVE that I can do in life will affect my health outcomes....the negatives will make it worse. There is STRONG MEDICAL EVIDENCE that stress affects your immune system's ability to fight cancer. I'm doing my best to keep the stress out and the positive in. That said, there's no way I'm giving in to this hideous disease willingly.
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Vickie

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Posted on
December 12, 2015
Wow, I also disagree with anon123456- sorry you are so angry and I accept that your anger is justified. Yes, I am angry (stage 4 breast cancer), yes I wonder why me, yes I am sad that my retirement may be shorter than planned, yes I experience Chemo brain on a regular basis. But I agree with Gobbler that a positive attitude and trying to live each day, moving forward seeing the glass as half-full rather than half-empty allows those around us to see us for who we are not just that we have cancer. A very dear friend lived with stage 4 colon cancer for over 5 years. One day, when I was bitching and moaning about my state of affairs, she told me something that has stuck- "Our job now is to make memories". She said although we could not predict when we would no longer be here, that we could spend time with our children, grandchildren and friends using that time to make lasting memories. For me, this holiday season will be a time for just that. Although I will fight the fatigue (still in the middle of another round of chemo), my plan is to spend time making memories- cookie baking, pizza making, swimming if we can. It is my hope that whenever I am gone- be it sooner or later, my family will talk about those memories I made for them. I also volunteer when I can at a chemo infusion center- as a nurse, it allows me to fulfill that part of me that loved nursing; as a cancer patient, I can just sit, listen, commiserate, offer any support that I can- those days give me energy rather than taking it away. I blame no one who can not attain a sense of peace. I do not expect cancer patients to be eternally happy. I do believe that reaching out to others helps us to move from anger and sadness to a sense of peace and fulfillment- whatever that means to you as an individual. Kubbler-Ross and Florence Nightingale talk about a good death. As a nurse, I know that those who attain a sense of peace will come to their end in a peaceful way; when stuck in anger and despair, dying is hard. Living with cancer is difficult at best; Living the best life we can while we are here will allow us to face the end game with a knowing that we did our best-whatever that was.
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Andy

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Posted on
December 13, 2015
I don't like to tell people what type of cancer I have or for how long and what chemo treatments I've endured because it usually turns out that it somehow becomes a weird competition and I end up walking away saying "Ok,you win". I wasn't short with others in conversations before chemo brain or chemo temperament (better description my experience). I did ,however, try to think of others needs before my own and try to serve ahead of being served. The Dr.s would rather blame forgetfulness and loss of recall on my age vs. the harsh chemicals that the nurses wear plastic shielding from head to toe as they administer thru my port. That said , I've turned to treating myself to pleasant memories of the past. Without me really digging , they somehow just flash across my internal screen voluntarily. I worry if it's more a matter of receiving a chemo brain flush and I will lose the ability to ever recall them months or a year from now. I guess time will tell. For that matter , time is the unknown in this equation.
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Kathy in Florida

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Posted on
December 13, 2015
Whatever. Cancer and its treatment have robbed me of much of my life, including financial stability. Chemo brain is a daily companion, as are neuropathy, vertigo, fatigue, joint and muscle pain, shortness of breath, etc. I can't work...can't manage my money...private disability insurance has stopped paying because I didn't remember to send them the reams of information they requested, and I'm losing my house. I am not unique by any means, and am much better off than many. The real question is not whether the glass is half full or half empty. I don't care. I care that my body has been, and is continuing to be poisoned, by toxins that (hopefully) killed cancer cells, but also killed my former life. I care that not enough research is being done on longer term cancer survivors, and the long term effects of our treatments. I care that we don't fund as much cancer research as we should because we have to spend trillions of dollars fighting wars that have gone on longer than any of us has been alive. I am grateful that there were treatments for me, and that I could get them. I'm totally pissed off that the toxicity of the treatments hasn't improved much, and we are still having to poison ourselves to live. What a friggin' contradiction that is!
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Jurgens

Member
0 Replies
Posted on
December 14, 2015
A few rules of cancer 1. Cancer is/can be hell. 2. The treatment is usually worse. 3. If you are still alive you should be thankful. That is unless you feel you have nothing to be thankful for. 4. If you are having problems with #1., perhaps a visit to your minister, rabbi, or mental health counselor. Surely some of you that are the most bitter/unhappy should have some reason to be happy. Children, Grandchildren, good friends. If that isn't case. Try real hard to find something that could make you happy. Just maybe you were am unhappy perosn before you recived the gift of cancer. The gift that keeps on giving. It's like when you were a little kid at Christmas and got a gift that you didn't like or want. Most kids just sucked it up and said thanks. The last few just threw a tantrum. Just for the record I had Non-Hodgekins Lymphoma, I was told stage 3/4. As you know this supposed to be a blood cancer, but I had a fatty tumor just below my stomach. The first Chemo put a hole in my intestine. I went septic. I now have a nice 23 stitch going up from my belly button. Oh, did I mention that went into the first hospital they over hydrated me. with a man it can go one of 3 places. it do go to my stomach or my legs, I had a wound specialist before I was dismissed from the hospital. It goes without saying that although the remaining chemo treatmens were not fun, they just could not match the first 7-10 day. It's hard to remember what happened in 1998. In early summer of 1999 I had a stem cell transplant. All went well, but if you think the regular chemo was a trip, the high dose chemo really was a trip. But 16 years I'm still here. Oh, again I forgot to mention for the past 9 1/2 years I have had a T-Cell Leukemia. 2 Nupogen shots per week until I die. While it may inconvient, for me it's worth the cost. One of the joys and gifts are the visits in the hospital. The Oncology ward has pins they wear. One of hem is "Cancer Sucks), Indeed it does. Once you have it you can never take that part of your life You can only decode to either be a sad sack and e pissed off for the rest of your life, or do the best you can to be happy with the life you hae. Gary
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D&K

Member
0 Replies
Posted on
December 14, 2015
I also disagree with annon. My husband and I BOTH escaped our first bouts of cancer minorly unscathed. After being cancer free for 12 years, my husband"s second bout with cancer; not so much. His prostate cancer already metastasized. We just learned there is no cure; however it's currently contained. He DOES have chemo brain. Occasionally I have a "downer day", however I can't help him if I'm "crying in my beer". He just finished chemo; I just retired, allowing me to spend as much quality time with my honey as possible. We're going to spend Christmas with my daughter who hasn't been able to come home for the holidays in over 10 years. We are going to celebrate life for as long as he is with me. Can we "afford" this? Probably not; but I can't afford not to. We have spent the last 46 years together & my daughter is "planning the celebration of the 50th"
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lkmystique

Member
0 Replies
Posted on
December 14, 2015
I have not had a chemo treatment since December 23rd of 2015 but I still have chemo brain. I wonder if it really ever goes away......
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Kamikazikat

Member
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Posted on
December 14, 2015
Everyone here deserves better than to have had cancer, a kind of plague of our time. For me, I learned that even though I have always had a tremendous respect for doctors and nurses, I can still be very angry with some of them! And I learned that my boymanfriend really really loved me, when I saw the worry in his eyes at my time of diagnosis, and several times since then And for a squeamish man, he helped me strip my drains! One of the very best things, is that by googling a few questions, I found an amazing online community, where we have forged true and compassionate friendships with each other, and I am so glad to also have been able to enjoy some of their company in real life! It has made all the difference to me, and so yes, I thank providence for those excellent women there.

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