If you have been a reader of this blog, you will have noticed from time to time that I will occasionally send “shout outs” to people around me who are helping to ease the burdens of this cancer journey.
You have read about my son Josh, the nature wanderer, who bonds more deeply with me when we’re meandering in Manitoba’s wilderness. Then there is my daughter, Marissa.
Her heritage comes from three generations of strong women on both sides of her family. With this feminine strength also comes a healthy dose of “smarts,” non-conformity, whimsy, and creativity.
Marissa has her father’s temperament, his sense of humor, and shares his love of many genres of music. They have been known to scurry to see who will be victorious in getting to the daily newspaper’s crossword puzzle first.
Marissa is also like her mother in many ways. She has my bright, expressive eyes that look at you and instantly melt your heart. She has my smile. She’s inherited the same curvature in her spine as I have (scoliosis). Sadly, she now also has a genetic predisposition to breast cancer because of my diagnosis.
Like her mom, Marissa has chosen a creative career path, involving the world of words. Since she was three, she’s has had a lifelong love affair with words. In our family, she has affectionately been called “the word nerd.”
As a child, Marissa devoured books. She would read up to six simultaneously at any given time, which she parked in various rooms around our house. She read pre-schooler’s books by age three. By grade one, she was reading my childhood favorites—Nancy Drew and Trixie Belden mysteries, which I read in fourth grade.
Marissa’s turn of a phrase earned her writing kudos from her elementary school years through to university. Her love of words led her to study Rhetoric, Writing, and Communications and Interdisciplinary Linguistics, which she is now applies to her work daily.
Like many other moms and daughters, Marissa and I naturally bond around food. We enjoy eating at ethnic restaurants off the beaten track. We can spend hours scouring new recipes to try, and then will go out to a supermarket, farmer’s market or an organic grocery store to buy the supplies to test the recipe. There’s no telling what our creative minds will find interesting to experiment with in the kitchen during these jaunts, or what we’ll come home with to sample.
Marissa is always up for a culinary challenge. Food is a passion of hers, as well as an area of potential study interest. She hasn’t ruled out returning to school to earn a second degree in Food Science, possibly combining it with writing to become a food writer or a food stylist.
She truly is a wonderful cook. But here is the scary part… a recipe is only the beginning to a kitchen masterpiece when Marissa is cooking.
Our family will sit down to a meal she’s prepared, and inevitably someone will ask her where she got the recipe. “Well, I took it off the Internet from one of my favorite sites, tweaked it, and added a few things.” The “added a few things” is so familiar; it’s how I cook! Her new groom Bryan is a lucky man, who also shares her love of spending time in the kitchen.
A bonus with being sick this past few months, is that Marissa comes home eagerly wanting to cook for me. It’s always a treat to let her loose in the kitchen because the meals that result from her culinary creativity are always great.
I am so proud of this pretty young woman in my life. I look into her eyes and she gives me the Strength, Courage, and Determination I need to continue my fight against cancer.
Understanding how our brains function has always been a fascination for me. It has become even more so as chemotherapy drugs circulate in my bloodstream, contributing to a temporary cognitive condition called chemo brain fog.
I am intrigued by how this “mastermind organ” that runs my body is affected while I’m undergoing chemotherapy treatments. My mind migrates to other places these days as it deals with subtle shifts in behavior that have come about because of chemo.
Each day, I am learning to be gentle with myself during this altered brain state. I remind myself that I am dealing with cancer, mastectomy surgery, the cumulative effects of chemotherapy and other cancer related treatment drugs, illness stress, low blood cell counts, fatigue, and some memory loss that naturally comes with aging. It is feasible that these factors may have joined forces to affect my memory in contributing to the brain fog.
I have wondered if the brain fog I am experiencing has resulted from my brain selectively choosing to shut down some of the information trying to be absorbed in my mind. Maybe it is my brain’s way of helping me to get through the overwhelming experience of living with cancer.
Chemo brain fog is not an imagined problem, but a medical mystery. Cancer patients will tell you that the symptoms they experience in their reduced brain function are real. The changes can be so slight that only the patient or their family members may notice them. It is a disconcerting cancer side effect.
Chemo brain fog is gaining more interest amongst medical researchers around the world, as they grapple with unlocking its mystery to help cancer patients learn how to better manage this peculiar phenomenon. The good news is that chemo brain fog departs over time, after all treatments are finished and patients recuperate from the toll their bodies have taken to get well.
During my second last chemo treatment earlier this week, I learned that the two chemo concoctions being used to aggressively attack my cancer rank amongst the most potent chemo cocktails in use today to treat cancer patients. This cocktail also has some of the worst side effects cancer patients will encounter while in treatment.
Some brain fog research results are showing that patients who receive high dosage, aggressive chemotherapy treatments are at greater risk of developing cognitive problems than patients who are being treated with lower dosage chemo drugs. Breast cancer patients are part of the high dosage, aggressive chemo treatment population.
As the potent chemotherapy cocktail pulses in the bloodstream throughout my body, the broad-spectrum distribution of the drugs kills good healthy cells along with fast growing “bad” cancer cells. It makes me ask: how could chemotherapy not destroy some of the good cells in my grey matter? Alcohol consumption destroys brain cells, so it makes sense to me that the potency of chemo drugs could be more powerful than booze is when it comes to affecting the brain’s function.
Brain fog in cancer patients is so common that our local cancer treatment organization recently introduced an eight-week rehabilitation session for cancer survivors. The goal of the sessions is to assist cancer patients with learning how to regain their memory and other brain functions so that their minds can return to their pre-treatment state. I plan to enroll in the course after my treatment is finished.
Multi-Tasking Mayhem
When actors are on stage, they each have a role to play to reveal the complete story to the audience. This is similar to how the brain works—six separate parts of the brain interplay with each other to make the mind work in its entirety.
I definitely have noticed a change in brain function since chemo treatments started. I have trouble planning a sequence of movements that are needed to multi-task. I encounter difficulties with problem solving, focusing, and flexible thinking. At times, I find it hard to express myself in conversations. I had never imagined that this slight loss of brain function would be a downside of cancer therapy.
Prior to treatment, I took pride in my ability to perform complicated multi-task functions all day long at work and at home. These days, it is a struggle to finish a task before proceeding to the next one. Activities have to be limited to one at a time, so that I can complete all the sequential steps in the task without interruptions.
I now live in a world that is quite different than in the past. The outcome is not always predictable.
Here is an example of my altered brain function while in cancer treatment. A few weeks ago, I ran some shopping errands. I bought some items at the grocery store and some craft supplies elsewhere. I brought both bags into the house together.
The second purchase was smaller, so I thought I took it to the spare bedroom and put it in
a spot that my brain would easily remember in context with where the other craft supplies are housed. The craft bag never made it to its intended destination.
After turning the house upside down to find it, a few minutes later it was located away in a cupboard in the other bedroom with the purchased toiletries. I didn’t remember putting away the toiletries with the crafts. It was so illogical.
When cancer patients are going through chemo brain fog, medical caregivers will tell them that a helpful thing to do is to make lists to keep track of information and tasks. I have been a notorious list maker forever at home and at work, so this was easy for me to do.
On Tuesday morning, I made a list of the few errands we needed to run before being rendered housebound for the next two weeks following my chemo infusion in the afternoon. One part of my brain told me to put the list in a place where I would readily recall placing it. I thought that putting it either in my wallet, chemo treatment tote, or purse would be obvious choices.
The last thing I remember was tearing the list off the notepad. I thought I had put it in the usual list place in my purse. While on route, I checked my wallet, purse, chemo supply tote, and jacket pocket to fetch the list and strike off the errands. The list was never found. I have no idea what happened to it.
This was a simple task that had an unintended outcome. I know I am in a poor mental state when I am told to make a list, do so, and cannot remember where I put the list to help organize my thoughts.
It would be frightful to be working now with this lack of memory and the inability to focus. I could not function in my demanding job under these current conditions. Living in the world with chemo brain is certainly perplexing.
At a Loss With Words
I am a writer by training and trade. Words have been my biz for over 30 years.
With chemo brain fog, I am not always able to find the right word during a conversation. I am forced to stop and search for words needed to convey my thoughts. I find myself grasping for words mid-stream in chats, when in the past I would have quickly chosen words with fluidity. It is embarrassing and frustrating.
Because of this language difficulty, I want to be more reclusive. There is a pull to protect myself, and have guarded conversations only with people close to me who are patient and understand what I am going through. It is yet another distancing symptom to cope with, in addition to the low white cell counts and high infection risks that already keep me away from others.
Recently visiting with my mom and my son, I mentioned to them how eager I had once been to tackle a stack of books waiting to be read while I am on sick leave. I love to read, particularly if the house is quiet and I can concentrate without distractions.
Six months into my treatment, the stack of lovely books I have received as gifts still remains untouched. I am having trouble comprehending and absorbing the new thoughts these books present. I cannot process the words well, and struggle with linking them back to personal experiences that may relate to my life through the written words in front of me.
There is one particular author I have read for over 15 years whose prose I always enjoy. I like his writing because his words lift me up as he draws on stories from his life that relates to mine. When I have been well, I can blast through a book of his in a few hours because I cannot put it down. I am laboring to get through one of his recent books. At present, all I can do is read a few pages occasionally and hope I will absorb some of what he has said.
I started to read another book on cancer, which was loaned to me in early spring. It still sits waiting to be completed. I cannot comprehend the concepts the “doctor” author is raising in his well-written medically based book on his experiences as a cancer survivor.
Do not ask me to recall what either author has said in their work, I will not remember. My short-term memory loss blocks my ability to do so, and is magnified with the chemo induced brain fog.
I understand the difficulty with reading while in cancer treatment. What I do not understand is that I am able to continue writing. I can still put words to paper and create a blog, which is good mental therapy for me. What is puzzling though, is that this brain function can be impaired by chemo brain fog as it goes hand in hand with reading.
Perhaps I am able to keep writing because it is a learned behavior from years of rote and repetition. Perhaps I am able to keep writing because it is a craft that has been well honed over three decades, as it has formed the base for my communications career.
Other Brain Bumps
Our brains control all the regulation of our body temperature, digestion, and sleep. For a day or two after chemotherapy, my body cannot warm up. At times, I have to put on three to four layers of clothing just to stay warm to regulate my core body temperature. It takes several hours to warm up.
My digestion is severely impacted by chemo due to its effects on the fast growing cells in the lining of the stomach. There are times when my stomach aches as if I had been retching all night because of the chemo drugs in my body.
I have never been a great sleeper since my first pregnancy 27 years ago. Disrupted sleep became a part of life. As the kids grew up, my sleep patterns improved. But as life got more complicated, the sleep-deprived nights remained a reality. Those former sleep disruptions were nothing compared to the poor sleep patterns that have now formed with my cancer treatment.
My brain’s sleep command centre is trying to cope with new forms of insomnia concurrent with my cancer diagnosis and treatment. For me, a good night’s sleep now is three solid hours of uninterrupted slumber.
While on steroids for chemo, sleep disruption climbs to a whole new level. I wake up in the middle of the night hyper and wide-awake. Dry mouth complications with chemo are also causing fitful sleep, as nightly rest is interrupted to hydrate the lining of my mouth.
This chronic lack of sleep further contributes to my chemotherapy fatigue. Regrettably, my doctor has placed me on medication so that I can sleep more soundly to combat fatigue, and to aid in healing and recovery. I’ve never used sleeping pills and fear becoming addicted to them. They are helping; I only get up twice a night now instead of four to five times.
Bonus Time: Parts of My Brain Do Work
I have no problem getting into the car and traveling anywhere in the city without getting lost or forgetting where I was going. I can still navigate streets and make it home safely. My physical movements, balance, and coordination remain intact. It is comforting to know that with the brain dysfunction I am experiencing, there are still some fully functioning parts in my brain.
I am tackling the cognitive challenges of chemotherapy in the same way that I have tackled the physical changes taking place in my body since my cancer diagnosis. I continue my fight for life each day with Strength, Courage, and Determination.
After conquering two infections in this fourth chemotherapy cycle, the two days leading into Thanksgiving weekend finally found me feeling much better. It has been a long recovery in this chemo cycle.
Unfortunately, I hit a bit of a glitch when it came to getting my blood tested at the end of the week for the next chemotherapy treatment on Tuesday. My central port line had a blockage and the chemotherapy nurse could not draw blood from it. The line had to be flushed two separate times with blood thinner to see if blood could be drawn. No such luck. It was disappointing, as I am on daily blood thinners so that these kinds of blockages don’t occur.
The chemo nurse had to resort to the “old fashioned” way of drawing blood from my arm. She was able to draw enough blood to test to see if my blood counts are high enough to have my second round of Taxotere this week. I will be able to go through the treatment as the counts were high enough to accept chemotherapy.
I’ve got my fingers crossed that the port line will work tomorrow so that I can have my second last chemo treatment. I am staying positive that it will work this time.
As part of the monthly pre-chemo blood tests, there is a standard oncology doctor’s appointment to review the last chemotherapy treatment and complications. As always, there are questions to ask and discuss as new symptoms came into play when new chemotherapy drugs are being used.
As the result of my two infections, the oncologist placed me on a higher dosage of blood booster in the hope that another infection can be averted with the next two chemo treatments. He is also placing me on an additional cycle of blood boosters after my last chemo treatment (should be November 2), as my blood counts continue to be very low without medication and need to be built up sufficiently before radiation starts in mid December.
Yet again, another doctor treating me was disappointed with my second 11-hour emergency visit last week. The oncologist confirmed that I had a case of Febrile Neutropenia while in Emergency, a chemotherapy complication that can become dangerous as it can quickly form a life threatening infection (such as sepsis) due to low white blood cell counts and an inability to fight infections.
The oncologist advised that the protocol for oncology patients waiting to be seen in Emergency should not exceed two hours. He was concerned that I was spiking a fever over 38° even with acetaminophen in the painkiller formulation I was using for chemotherapy pain.
I was advised that if I should run into an emergency situation again with a fever and a long wait, that I am to call the oncologist on call and have them paged. I am to ask them to meet me in Emergency so that I do not wait 11 hours in a room full of sick people who are spreading all kinds of germs my way.
After tomorrow’s chemo, I have one more specialized medical visit this month. An MRI appointment has been scheduled at the end of the month to check a suspicious liver nodule, which was discovered by the CT scan earlier this summer. Admittedly, I am a bit anxious about this hoping it’s not cancer, and because of the confined quarters of the MRI scanner. I also wonder how the metal pins in my back (they anchor my spine in place from scoliosis surgery when I was 13) will fare from the scan as the magnet of the MRI.
A Time to Give Thanks
How can one not be thankful these past few days for the glorious Manitoba weather? The temperatures of 23°- 26° have come with abundant sunshine as its rays cloak the land across the province.
Thanksgiving weekend naturally forces one to reflect on things they are thankful for. Some of these things are easily expressed; others that come from one’s heart to another’s heart are more difficult.
As I’ve said before, which bears repeating, I am most thankful for friends, family, and colleagues in my life. They are even more precious now as they travel with me on this cancer journey. I am also deeply thankful for the wonderful care every member of my cancer team gives me each time I have an appointment at the cancer centre.
Every person in my life is a treasure as they bolster my spirits and encourage me in this cancer battle.
I felt humbled and blessed to be surrounded by loved ones last night at my mother’s home as we shared in a dinner of thanksgiving. All of us around the table were the same guests as last year, without any departures from our family.
Living with cancer makes you so much more grateful for the gifts of people in your life as you don’t know if you will live to see the next Thanksgiving.
We were all grateful to have our Thanksgiving dinner in the beauty of sunshine in a three-season sunroom. Imagine—Manitoba Thanksgiving on October 10 with 24° and dining outdoors! This is a memory I will cherish for the rest of my life. It was a simple moment to enjoy the Thanksgiving bounty in the midst of loved ones young and old.
Thanks for Wilderness Treks
Ever since he was 10 years old, our son Josh has always been open to hiking wilderness trails with me. As my wilderness companion of over 15 years, we have a special bond we’ve formed with nature. We have explored many beautiful forests and wilderness areas in Manitoba. We have enjoyed many summers hiking in Riding Mountain National Park during family camps. Closer to home, we’ve trailed off on paths at Oak Hammock Marsh since he was in elementary school.
We’ve donned our hiking boots and tromped on tree-rooted trails, stomped through muddy paths, walked along wild grasses with outstretched arms, pounded gumbo trails, jumped over puddles, sauntered in creek beds, and kept our eyes peeled for prairie dog tunnels to avoid twisted ankles.
We’ve trekked to Bead Lake where we saw a kingfisher dive into the lake to catch a fish. We’ve marveled at the majesty of a full-grown moose grazing alongside a lake. We’ve heard the whack of a beaver’s tail warning the colony that danger lurked nearby.
We have skipped rocks in the silence of a lake laden forest where the only sound was the rock hopping on top of the lake. We have passed by complimentary canoes and paddles, and wondered about the adventurers other trekkers would have made as they paddled on the inter-connecting marshes to explore the park’s aquatic life.
We’ve witnessed the sunrise over a breakfast of home-made cinnamon buns and juice while sitting on the peak of Manitoba’s escarpment enjoying the breathtakingly beautiful Gorge Creek Trail.
Gorge Creek Trail is one where you have to be careful not to slide off the path as it’s quite high and can be peppered with wet shale. It’s one where the floral and fauna present wonders to see. It’s also one where you can catch a nasty case of poison ivy from plants taller than you are in Manitoba’s only “tropical” forest along the base of the creek bed.
We’ve climbed on our mountain bikes to explore the trail that led to Grey Owl’s cabin, and joined with thousands of others who have make the same trek leaving behind their signature’s in the cabin’s guest book. We’ve walked a trail in the pitch of the night, which was only illuminated by the brightness of the moon overhead.
These were all magical mother and son moments that I reflect on. I am thankful for having had the opportunity to share these times with my son and passed on an appreciation of nature to him.
Thanksgiving Trek
For many weeks, I have had a yearning to spend time outside in the wonderful warmth of the unseasonable temperatures and the beauty of the sunshine that comes with it. This weekend, I felt strong enough to leave the city and spend some time in the solitude of rural Manitoba.
With Josh’s encouragement and enthusiasm to leave the city for a few hours to explore nature, we sojourned to Oak Hammock Marsh on Saturday morning. With the extended summer weather we’ve been having, our hope was to catch the last of the straggler geese that have not yet migrated to warmer climes.
There was no breeze at all at the marsh, which is a rarity. We walked along the pathways and watched geese, white swans, ducks, and sandpipers bask in the warmth of the autumn sun. With the whoosh of their wings, some took off from the water while others dove into marshes along the walking paths.
We sauntered to our favorite observation site on a hilltop of the marsh, which gave us a 360° view of the wetlands. Birds were all around us singing their marshland songs. The sunshine was so strong; it could easily have been mistaken for a late summer’s day, instead of Thanksgiving weekend.
As we sat upon the hilltop, we caught up on each other’s lives while watching the behavior of the waterfowl. The power of their wings and the distances these birds travel to come to and leave Manitoba every year are a wonder. We were fortunate to catch a maverick goose in flight doing a full barrel fight rotation in mid air several times amongst its peers.
Sadly, we had to leave the birds and the sunshine as patients undergoing chemotherapy are not to be exposed in direct sunshine for a length of time without protection. It didn’t occur to me that I should have packed sun block in our knapsack in October!
We traveled further down the provincial highway to spend some time collecting driftwood along Lake Winnipeg. The pier was packed with people fishing, walking along the boardwalk, and watching sail boats and sail boarders bounce between sun spiked waves on the lake.
There was much to give thanks for this weekend for the people in my life and the places I’ve been. Each person and each place gives me warm memories to hold onto as I continue to travel in this cancer journey with Strength, Courage, and Determination.