Northern Lights: Weather Report – Fog And Freezing Rain
What was the weather report usually in the spring of 2010 when I was undergoing stem cell transplantation? It seemed to match my mental state: Snow showers (cold and lonely thoughts); freezing rain (tears unwilling to be shed); fog (brain fog, that is), often interspersed with bright sunshine (grateful to have survived the myeloma). Typical foothills weather; if you don’t like it, wait 15 minutes, and it will probably change. That is the way it is in the shadow of the Canadian Rockies.
The treatments that I went through involving chemotherapy drugs had a deleterious effect on my cognitive abilities at the time. (I like to think that I have recovered now from all of that, although that is not really for me to decide.)
After successful induction therapy, I plunged into the stem cell transplantation process in the spring of 2010. I received strong doses of cyclophosphamide (Cytoxan) before the stem cell harvest and then melphalan (Alkeran) for the destruction of my bone marrow; a day later, my stem cells were used to ‘rescue’ me from that treatment. The entire process certainly did not help my brain powers.
I photocopied sheets of poems and took them to the cancer center in an effort to memorize them while I received treatment. Robert Burns, Joni Mitchell, William Shakespeare…the muses kept me company there. I couldn’t get the poems, songs, and sonnets memorized, though. Chemo brain was making inroads into my powers of concentration. If you are an older person and have tried to memorize song lyrics, piano pieces, and such, you probably know what I mean. The young adults have us beat when it comes to memorization, even at the best of times.
According to the American Cancer Society, ‘brain fog’ or ‘chemo brain’ can be defined by the following symptoms:
- Short-term memory loss
- Trouble concentrating, such as having a short attention span
- Trouble with word finding, such as remembering names or being able to complete sentences
- Trouble with multi-tasking
- Slower thinking and processing times, i.e. taking longer to finish things
Some of the foggy effects I suffered were variations of the above. I couldn’t place people’s names even though I had known them for years (once I got the name back, even hours later, it seemed to stick, though).
I felt quite lost sometimes, probably partially due to cognitive impairment, but also because I was still processing the whole myeloma diagnosis and treatments emotionally. I couldn’t remember even the simplest things sometimes, let alone function as I had a year earlier. I couldn’t do simple mechanical things, like open a combination lock, untwist a cap on a ‘childproof’ plastic bottle of pills, or change a cartridge of printer ink on the computer’s printer. I was also worried about my driving skills and kept my driving to a minimum. I think that my reaction times in driving were slowed down then.
I usually keep a journal, briefly noting the events of my days, but there is a gap in it right around the time of my stem cell transplant. The journal entries gradually started again a month after the transplant.
I wrote that we were invited to a friend’s house to watch the opening ceremonies of the Winter Olympics, which were held in Vancouver that year. It was great to be included in a social event again after being so ill and tired. By another month, I was back to doing bookkeeping for work and in a rush to meet the deadlines for tax returns. Our accountant was really helpful in getting me through tax season that year.
I am sure most patients are aware of the phenomenon of chemo brain, and I am also sure everyone has their own unique way to try to get back to normal thinking processes.
A few things helped me out a lot in dealing with chemo brain.
One was continuing to communicate with everyone in my life, be it by talking together in person, on the phone, or by e-mail. It helped me to practice stringing my sentences together again in a meaningful way.
Another help was the use of crossword puzzles and online scrabble. My mom, both of my sisters, and I have been playing scrabble together online since 2006. We actually have played hundreds of games together. It has helped us to stay in touch with each other since we live many hundreds of kilometers, a few mountain ranges, and an ocean apart. Scrabble is my word game of choice…you can stretch your vocabulary and it keeps you mentally alert too.
As mentioned above, I keep a calendar to keep track of my events. I have found that it useful not to make too many lists or keep several calendars at a time, because that can cause confusion.
I started tying brightly colored bows on my suitcases when travelling to help me recognize them and remember not to leave without them. More than once I have forgotten a suitcase in an airport and left the building without the case. It is not just the luggage checked onto the plane I have trouble with, it is also the carry-on bags.
I have a rolling backpack, charcoal in color, that I have repeatedly left behind in airport waiting areas. I would have lost that case by now if it were not for my husband Dilip noticing its absence. Once we had already boarded a shuttle bus and we had to jump off and run back into the terminal to the information booth where I had left it. So now I tie bright flags on everything and hope that I don’t forget any luggage in the future.
Walking has also helped me in organizing my thoughts. On many of my walks, I would be mulling over my to-do list, when suddenly the order of what to do when would simply fall into place…clunk! I planned my day that way, since lists are usually too long and unrea-LIST-ic anyways.
One of the best things I did to combat chemo brain was to take up writing that would be read by others.
In the spring of 2010, I volunteered to be the secretary for our needlework guild, a local group about 60 ladies strong. They really needed a volunteer but were surprised when, wearing my wig and still receiving chemotherapy, I put up my hand to offer help. At first, it was a struggle actually to do those minutes, but I got my name recognition skills mostly back in order and succeeded in following the flow of the meetings and get everything jotted down. I only had to re-do the minutes a couple of times, and since it was a volunteer task, most people were fairly understanding of any ‘errors or omissions’, and pointed those out.
Then, in the winter of this year, I started to write a column for the Beacon. This has also helped me tremendously in sorting my thoughts in regards to the events of the last three years.
I hope that some of my suggestions help those going through cognitive difficulties. I can say that most of them sorted themselves out over time with a little effort and the help of others.
One final note: It is mentioned on the Canadian Cancer Society’s website that a patient may notice problems with memory a year or longer after treatment.
One should also realize that many people who have never had cancer may have the same memory problems.
Do any of you readers have any thoughts you would like to share on the phenomenon of brain fog, aka chemo brain?
The weather report for today calls for ‘mild temperatures, mostly sunny, no rain or fog, just a few scattered clouds.’
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The quotation for this month is from Oscar Wilde (1854-1900), an Irish playwright, poet and author of essays and novels, who wrote "Memory is the diary that we all carry about with us."
Nancy Shamanna is a multiple myeloma patient and a columnist at The Myeloma Beacon.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at
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Nancy: Great column! I chuckled when I read one of your last sentences
"many people who have never had cancer may have the same memory problems".
My husband has an excuse when he has memory issues (chemo). I, on the other hand, just have to attribute it to "Senior Moments".
Great suggestions for keeping one's mind sharp - regardless of the reasons.
Thanks Sarah for your nice comments! Sounds like you and your husband are a great team!
Hi Again Sarah, I meant that you and your husband are a really supportive team for each other, and that's what counts really. I am sure you are both mentally sharp too!
Wonderful post, as always, Nancy! Thank you for sharing your sojourn into (and out of) chemo brain. In mid November I will be coming off of medications after having been through high-dose, hard-hitting inductions, stem cell transplants, consolidations, and three years of maintenance. Though I am much better now than during the pre-maintenance treatments, I look forward to using your tips to get back up-to-snuff. THANK YOU! I hope that the weather stays beautiful for you in the foothills of majestic Rockies.
You know Sean, your columns are very popular and I and many other readers are wishing you all the very best as you come off of your very long and intense treatments. I think you have done very well throughout the months this year when I was reading in...I really never chuckled so hard while out walking as when you wrote the MRI THE 8th column..
Anyways, it's lucky I did keep almost all of my lab tests and keep a journal most days, in terms of writing columns, although that was the farthest thought from my mind when I started the 'myeloma journey'. But being involved with the 'Beacon' has been a source of knowledge and comfort to me this year. Have been 'drug free' for 17 months now and hope it continues on that way...but of course go in for my routine 3 month testing, and hope that all stays in remission.
I realize that there are many approaches to treating myeloma...I think that is where the 'art' of medicine comes in, as well as the 'science'. I only hope that all patients could do well and get past the dreaded myeloma! Thanks so much for the compliment, for it means a lot to me!
Hi Nancy, thanks for your column and all of your other comments. I have had a few of those foggy days and they really stink when you are at work or just trying to play ball with the kids, etc. All in all, I have tolerated my carfilzomib/rev/dex well but look forward to the first week of December when I will then only take a reduced dose of revlimid for one year. Your region of North America sounds beautiful.
Hi Terry...I know ...those 'brain freezes' are worse than the weather sometimes. I think that we gradually get coping mechanisms in place to deal with them too, even in everyday life. At meetings people wear name tags, many people use their cell phones as calendars, etc. Nobody expects people to have perfect memories...it's just that the strong chemo meds can really affect one's cognitive abilities. Hopefully if one is in a supportive environment, one can recover from that too. The other day I was at a meeting, and I could not remember the word 'A frame' to describe a building shape, had to gesture with my hands and describe it as a tipi, until someone stepped in and told me it was an 'A frame' I meant. Yikes! i had forgotten the word completely. In the greater scheme of life, one's vocabulary isn't the most important thing, but it is nice to be able to remember words!! (That's why scrabble is so much fun...maybe your kids would like it?)
Well, yes, I think that the West is beautiful...guess that's why I still live here, after all these years...have always lived either in Alberta or British Columbia. This year we had a chance to go up north to the Yukon (with a side trip to Alaska) for the wedding of one of my daughters. The Yukon River is such a beautiful green colour, and the days were very long too..fantastic countryside.
But I have been lucky enough to travel around a bit too, and we have relatives in New England, New York area and California in the US. The fall colours in New England are wonderful...I had never seen such large deciduous trees before visiting there. sO I am sure that every area has it's own beauty. Take care, and have a nice weekend too!
I too underwent a SCT 2010 nov, chemo brain had me doubting myself. I was drug free for 15 months, now I am on rev, cytoxin and prednisone. Ok now the mind thing has started all over again along with the mood swings of the steroids. Right now I am in such a funk. Need to decide to do a mini allo transplant with an unrelated doner. STRESSED about everything.
Hi Music Meme...you have such a great online name! Are you a musician, a music teacher or the like? I am really sorry to hear that you are having to go back on the chemo drugs again after a remission of more than a year. I don't know anything about the 'allos', but as you probably know, there are people involved with this site who have experienced those. You could put a question up on the Forum if you wanted their experiences to mull over, too. Hope you can find some ways to relieve the stress too, since worrying only helps so much. i like to walk, while listening to music, play scrabble etc. That helped me through a rough time. Best wishes to you...please stay in touch!
Yes, I play keyboard at my church, I have looked into allo's and I kind of know what to expect. Words with friends is my favorite pass time. I need to make myself get in the mood for walking or something. I just keep thinking that I will wake up and all this stuff will be gone. My faith in God has not wavered. Sometimes I just get tired.
Hi Music Meme...thanks for getting back here. I had seen you post before and always liked your online name! My choir practises weekly in a church, and our co-directors also lead church choirs. Although I am not active in that, I like to pray too, and really appreciate all the prayers that have been directed my way over the last few years. These positive blessings just have to help! I like to walk a lot, since I have convinced myself that it boosts my immune system...but also love the out of doors, always have. I just thought you might like to post a question on the Forum, since there are medical advisers who can give some advice, and also other patients who have been through the same thing...i.e. 'mini allos'. I was trying to explain them to my husband but don't quite understand them myself! The medical people would probably want to know a few more details about your medical situation.