Long time no post people. I am still here, and theoretically not cancering. Part One is about Chemo Brain, and Part Two is an update of sorts…
Part 1 : Chemical Brain Remodeling
So, the Brain, what is up with the brain? If I know anything it is that the cancering treatment experience resulted in my brain being modified. My intent with this post is not to freak people out who may be just starting treatments. Please know that there are things that can be done to improve brain function recovery. Also be advised that I may or may not be on the far side of the bell curve. My strange new brain that operates differently post cancer treatments may just be thus because my brain started out on the strange side. Cancer changed me in many ways, some of which I view as actual improvements. The fallout of lingering side effect symptoms continues to be somewhat of a challenge, emotionally, These symptoms do not fall into the gift basket side of things
It is called chemo-brain, even though the current consensus is that it is probably caused by the whole wicked cocktail of the cancering experience. As I moved through the 4 year anniversary of my diagnosis in December 2013 it is clear that I am one of the “lucky” ones – those that have perceivable changes to my thought processes years past treatments. It is a transitory affliction for most, according to the party line. Though it is worth noting that this is the same party that denied chemo brain for years, labeling it a psychosomatic illness – i.e. “Just in your head – you poor pathetic, hysterical woman” I am proud of the many women treated for breast cancer that told such smug doctors to f*** off, as in “While this may well be in my head, I am not making it up Asshole. Figure out what is going on.”
Evidence in peer reviewed studies finally fesses up to it. An equation for chemo-brain might look something like this: Stress+Poison+Anesthesia+Cancering+Large #’s of Unknown X Factors=Broken Brain. Pretty much if you are diagnosed with cancer you are at risk, because you will experience one or more risk factors. To have it persist ‘significantly’ past treatments is supposedly some smaller subset of the whole population of cancering folks. Though it seems somewhat likely that underreporting is common.
There are several things I know about my situation that I believe are specific contributing factors. Number One: My body is very sensitive to substances. If you are a regular reader of this blog you have heard my words about this many times. If you haven’t the sum up is: I am a very cheap date. My body is strongly influenced by everything from sugar to advil and beyond. So when I get bigger things, like for instance anesthesia, what might seem like the right dose acts like a high dose. My body “overreacts,” with symptoms like the plummeting blood pressure that persisted for hours and required hospitalization after my port placement. Contributing Factor #2: I was diagnosed with aggressive locally advanced cancer and I was otherwise “young and healthy” which means they were motivated to give me as high a dose as possible. #3: I received two chemo drugs that rank as high on the scale for neurotoxicity, one of which does cross the blood brain barrier. #4 when I started to have neurological symptoms, namely neuropathy with loss of dexterity, ringing ears and hearing loss, they did not adjust my dosage. And #5 I have a strong family history of dementia and alzheimer’s – which suggests to me that perhaps I have a genetic proclivity for brain vulnerability.
It can be hard to identify the ways that the brain is different. These are the things I have identified in my brain:
- Word retrieval and general verbal processing is slower, especially so when I am tired.
- Spacial literacy – that non conscious judging and decision making about things like volume and size – how the physical world works in space. Prior to all of this my ability in the spacial realm was very high – I could estimate volumes of differently shaped vessels with high accuracy. Example: Finding the right lid for a pot of rice required no work of my conscious brain – I could let the spacial part of my brain choose. Now I need to pause, consider – and still occasionally I still drop the lid into the rice when I choose wrong.
- My sense of direction, which had always been very good – is no longer that way. I can no longer look at a map, get my bearings and feel the right way to go. Like the neuropathy in my fingers my directional sense has been deadened.
- Time sense. Okay even though I am a person who has invariably been late, and my sense of time estimation when working on something is famously poor, there has been a change in this area too. What is new is this vague sense of disorientation in time at a greater scale. For instance just what season it currently is is not always as obvious as one might think it would be. This is especially bad when inside big box stores. It is kinda weird. What day of the week is it? Off line more than on.
- Object permanence – Out of sight out of mind has taken on a whole new meaning for me. People places and things are all impacted by this erasing effect. Cookies in the oven? “Cookies what cookies?” There is a glitch in my functional memory.
- New People. I have met some people 2-4 times before they become any sort of real. I mean truly for me I have met them 2-4 times as if it were the first time. Even after I start to put them into the “I know You” category their name and face are not really that well tethered. “Make new friends and keep the old” is not so easy advise to follow.
- Mental math? No.
- Keeping a list of to do items in mind? No
I am choosing to focus on the possibility that my brain will continue to heal, that my neuropathy will continue to improve. I have no way of knowing if either of these things are true. The power of positive thought and all that.
Part 2 – The Update
The last several months bring all kinds of cancer anniversaries for me, such as my diagnosis and the onset of treatments in 2013, then in Late April it will be the 4 year anniversary of my surgery. Back on Halloween I went to see my oncologist, and we spoke of my disgruntlement with him about various things. We agreed that I would only be seeing him one time this year, rather than two. Though I will still have my semi annual scans and blood work done through his office. Hello Mammogram this week. The round of blood work and the breast MRI both came back in normal range from that October visit. This is all good and something to be deeply grateful for.
My main disgruntlements that I discussed with Dr. Andersen stem from the continuing saga of my lingering neurological symptoms. Namely neuropathy of my hands and feet, which I wrote about here, ringing in my ears and change in my hearing, and changes in my brain function.
I got my hearing tested last December by a very competent and compassionate provider. Herself having gone through breast cancer treatments. The results of the tests came back in normal range. The audiologist pointed out that this does not mean that I have not experienced a change in my hearing acuity. In fact prior to giving chemotherapy drugs with the capacity to effect hearing it is recommended that people have their hearing tested. Drugs, like the drug carboplatin that I received. Ear ringing is something that despite study remains largely mysterious – she said that there are things that can make it worse – being over tired, eating too much salt. She suggested that at night having some kind of a white noise devise could help me sleep when I have trouble ignoring the sound that has no cure.. Another helpful thing she said was that my difficulty understanding what people are saying, may be related to changes in my brain function. There is a difference between being able to perceive sound and being able to process it. Good point. She summed it up with, the changes are real, and they do get better with time. Well the brain changes can improve- the ear ringing is probably just part of my situation. She recommended that I have my ears tested again in 3-4 years.
I still go to the Hai Shan clinic every 8 weeks, am still drinking my Chinese medicine twice a day.
What I really miss is the lymphatic therapist, Jan Miller, who I used to see monthly who left town almost a year ago. My arm is behaving well swelling wise, I’ve been doing self massage as needed when it does get sloshy. The work Jan Miller did regularly on my trapezius is however very much missed. After several months without body work I am realizing that I need that support.
The boys and chickens and kitties are all good. Sam is enjoying his studies and looking forward to graduating with his Associates degree in June. MT and I are studying Biology and a little chemistry for homeschool, and he and Joe are doing a lot of math together.
All in all I am doing fairly well. I started back at the bakery part time. Something that is both good and largely surreal. My grasp of linear time has never been great – and post treatments has been notably worse. So working there is a little disorienting at time. I have many opportunities to be thankful to old me who was really good at setting up recipes. Thanks Old Me! This has also been a good opportunity to test the waters on my arm. So far I haven’t had problems with swelling, however I have needed to relearn how to lift and move things re: my reduced right pectoral muscle. I usually am significantly trashed energy wise after a 7-8 hour shift, but as long as I accept that and nap I don’t loose the next day. Generally it is a joy to be there, and fun to bake again.
Mostly I am spending a lot of time in my studio these days. This is bringing me much much joy. I have started seeds to plant a dye garden this year on the back deck, looking forward to doing more leaf printing ala Irit Dulman, and have a trip to Vancouver BC planned to take another class on Natural Dyes in May. If I can figure out how to create some cash flow with my art than life will be both joyful and more financially stable.
As we enter the realm of spring I wish all of you well.
9 Comments Add yours
good to read your update. nice to know you are back to working, studio and otherwise. it’s a long path back to health and good to document for all. may many seeds rise in your garden this spring!
Thank you fellow traveler. Xo
Really enjoyed your “Chemo Brain” entry. I have experienced much similar function loss. Am now two years post chemo treatment and feel it may “Not be enough to notice” by most people around me, but certainly has been felt like “a kick in the gut…or should I say head?” to ME! Would you mind terribly if I share a few of your thoughts with some other survivors that I know? Best wishes, and continued good health, Barbara.
I do believe it may be much more common than is acknowledged. Feel free to refer people to my blog, it is my hope that my field notes will help others somehow, if only by validating a shared experience. Best of luck on your recovering brain.
Great post! B >
Good to hear you are doing relatively well. Are you taking Tamoxifen?
I took Tamoxifen for 2.5 years, ending in November 2016 due to a number of increasingly intolerant side effects. All of which resolved after I stopped taking it. The dark side of being highly sensitive.
Thanks for stopping by, best wishes on your path.
I will be switching to aromatase inhibitor instead of Tamoxifen as my uterus lining is thickening which is the side effect of Tamoxifen. However, the alternative will cause osteoporosis as a side effect. My Onco advised me to just get hysterectomy. Do you have the same problem with Tamoxifen?
I definitely had feelings of heaviness in my uterus, which made me wonder, but never had it accessed. The over riding concerns were, daily muscle cramps in my left leg and foot, increasingly intense anxiety that was not situational – with constant feelings of doom. Dry eyes, hot flashes, zero libido, and disrupted sleep. The anxiety was the biggest problem for me. Everything on this list has improved, since I stopped Tamoxifen. Interestingly my mild lymphedema has also seemed to have improved somewhat.
I have chosen not to follow all of the suggestions from my oncologist, though all my decisions have been openly on the table. I also have pursued parallel treatments using traditional chinese medicine and naturopathic modalities. So my path has been outside of the standard of care in many ways.
There are many difficult decisions in the cancering long game. I wish you well as you seek within yourself for the best way forward for you in your situation. Sending light and love.