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.
As a cancer patient, I have a lot of time to think about the life I’ve lived and the present. I don’t think a lot about the life that is to come.
I’ve chosen the route of walking with my eyes wide open, rather than avoiding the realities of living with cancer. I’ve made many observations in how the outside world treats someone with cancer. It has also forced me to look into my internal world in living with this disease.
There have been many lessons learned, and there are many more still to come.
Connections, Reconnections, and Disconnections
The cancer world is one of connecting with people in a deeper way, reconnecting with people who have been distant, and disconnecting with people who walk out of your life because they can’t cope with you having cancer.
Connections with others ensure that I don’t walk alone. When people know you have cancer, they exhibit a “gentle kindness” when they are in your company. Family, friends, and a host of medical professionals walk alongside me in this journey so that I am never alone.
Cancer patients don’t want people around them to stop calling them, to be afraid to talk with them about their illness, or to stay away because they don’t know what to say. Cancer patients want people around us to stay in touch, tell us about their days, share their lives with us, and just spend time with us. It’s that simple.
Cancer patients don’t want pity; we just want people around us to understand what we’re dealing with. We may not always be ourselves, as you knew us prior to being sick. If we’re not “ourselves,” it’s not because of the people around us, its more likely that we don’t feel well because of our treatments.
The personal connection I have made in this cancer experience is that I can no longer be “Superwoman.” She died with my cancer diagnosis. A new super hero is being built as I journey through fighting this disease. She will likely have a hearty dose of resiliency and compassion and other positive traits that are being acquired as part of living with cancer.
Medical Caregivers
The medical staff working in the cancer treatment ward is fabulous. They are kind, caring, compassionate, attentive, friendly, upbeat and understanding. Chemo anxiety levels during treatments are lowered because of them. You quickly learn to dispel your fear of doctors and nurses because there are so many of them you’ll encounter in your cancer journey.
Something I read early on about cancer said that the patient should see themselves as the “captain” of the medical team treating them, as you are the person who is closest to how your body responds to treatment. The medical care providers look to us as cancer patients to give them clues they need to help treat us. This pro-active patient stance is comforting.
Emergency staffs treating chemo patients always feel terrible when a cancer patient has had to wait several hours through the night or on a weekend to be seen due to bed shortages. Emergency rooms are places chemo patients dread because of the risk of exposure to sick people who can make cancer patients sicker due to their lowered immunity.
Cancer Time and the Tick-Tock Clock
Cancer patients don’t live their lives too distantly into the future. We are day-by-day people. We deal with the “here and now” in our worlds. Many of us would tell you that a cancer diagnosis and the fight to wellness are overwhelming. We learn to cope by compartmentalizing what we need to deal with as it arises, and we block out the rest.
I’m 14 years away from official retirement. Retirement is not something I think about because I may never see it. I’m learning how to live only in the present because the future is far away.
Boredom has been my unwanted sidekick in this cancer journey. It’s taught me that I don’t do well with idle time on my hands. Daytime TV is terrible and not a boredom buster.
I’ve always been fiercely independent as a full time working mother who made multi-tasking a fine art. I’m not very good at knowing what I need and asking for help. Cancer is teaching me that I have to be dependent on others, and on their schedules.
Life goes on relatively normally for family and friends around you as a cancer patient. As the patient, there is “no normal” in living with cancer. One day when the treatments are finished I too may have a “normal life.” However, it will be a “new normal” as cancer patients’ lives are permanently changed once they are diagnosed with the disease.
Restlessness is part of the cancer patient’s experience. You’re restless because you’re bored. You’re restless because cancer is always on your mind and you look for distractions to stop thinking about it. You’re restless because some of the chemotherapy drugs have steroids in them and they make you hyper.
Nature’s Restorative Power
I am being pulled to nature to find peace. I particularly like the quiet of rural areas, as they are a reminder of my past.
Bodies of water draw me to rest, as they’ve always had a calming effect throughout my life. As a young child growing up in rural Manitoba, our farm home was along a river. The river was a place to explore and escape. When I needed to find serenity and solace, the river was my sanctuary. There is a calming trance that overcomes me when I sit beside water and watch it flow. It is water that brings me restorative peace.
In living with cancer, water is an image that still holds a lot of power for me. Unfortunately, these days I don’t feel well enough to immerse myself in nature to experience water’s calming benefits. Sitting or walking alongside a body of water is a dream I hold on to that I will realize one day when low energy levels with chemo are behind me.
I need sunshine to boost my spirits. The warm reds, browns, and golden yellows of fall are a visual delight at this time of the year.
Manitoba winter is around the corner. I’m not looking forward to the colder winter months ahead that will coincide with my daily radiation treatments. This combo will be hard to endure.
Chemotherapy Challenges
When you have a chemo-induced lack of appetite, food has little taste. You learn to eat to live. Food is no longer pleasurable; its purpose is for body fuel. Acidy and spicy foods have been traded in for bland and comfort foods.
As a cancer patient, needles are a part of your life. I believe that I’ll never get used to my daily needles of blood thinners and blood boosters. It surprises me that .5 ml of blood thinner injected subcutaneously can sting so much as the serum spreads in the body.
When you have chemotherapy drugs in your system (there are about 100 different kinds of chemo drugs to treat various cancers), drinking water makes you nauseous. Yet, it is a liquid that cancer patients are to use a lot to flush their system of the drug. You quickly learn to disguise the taste of water with drink crystals and flavor infusions to make it tolerable.
Chemo fatigue is an interesting phenomenon. It can be quite subtle or it can rock your world and knock you out, depending on the person. For me, it’s the former. Because it is so subtle, I am learning how to listen more carefully to my body fatigue signals.
A member of my health care team has told me that I have considerable fatigue as I wrap up the fourth chemo treatment. She says and that I should be resting most of the day—like straight bed rest except it should be in a recliner so that my nighttime sleep is not disrupted. This is a tough adjustment as I am not a napper—a familial trait from my mother.
She also tells me that my cancer diagnosis and the multitude of chemotherapy related side effects I have been experiencing are not typical of the majority of breast cancer patients she has worked with. It seems that I am a cancer patient exception once again!
With chemo fatigue, when I’ve done one small household task, it’s a good day. It amazes me to think about how many things I did in a day while working full time, raising a family, and running a household.
A body under chemo treatment is a body out of control. Cancer patients in treatment are well known to be colder than most people, because their central nervous system that regulates body heat is affected by chemo. This is why we’ll dress in layers (even in the summertime) and almost always have something covering our heads to prevent heat loss.
When I had a chemo fever, my whole body shook out of control because of rigor. This was something I’ve never experienced when I’ve had fevers before cancer. Chemo fever is definitely different. It’s scarier than having a “regular” fever because you know how sick you can become with an infection building in your body due to low immunity.
I’ve had to draw on my well of internal resources over and over again as I cope with the multitude of complications that have been part of my journey to wellness. Cancer has made me stronger and tougher than I ever thought I could be, but I’m not complaining or cynical. I hope it stays that way.
I continue moving forward in this cancer journey with my eyes wide open and a heightened sense of living in the present. Daily, I am fully aware of the smallest “positives” in my world. They help me to live on with Strength, Courage, and Determination.
While loved ones, friends, and medical caregivers have been constant companions in this cancer journey, there has been one other constant companion in this stage of my life. It’s the Little Brown Book that accompanies me whenever I am going to a medical appointment.
It measures 6” x 9” x .5” and has a black coil and a brown cover. Made from recycled paper, this lined notebook with a dateline on each page has been my anchor in navigating the world of medicine and gaining an understanding of the complexities of cancer.
As a cancer patient, you’re told early in your diagnosis to write down your questions and lists of medications for your medical visits. It’s been good advice.
There are two reasons why I like my “Little Brown Book”: there are a lot of questions cancer patients have that need to be answered, and it serves as a repository of documentation when “chemo brain” forgetfulness and short term memory become part of your everyday world.
Perhaps this Little Brown Book has become my companion because it’s reminiscent of when I was a print, radio, TV reporter where little log books were the means to hold information for news stories before they were written. Perhaps it’s a little piece of comfort and predictability that I can hold in my hands when dealing with the uncertain world of cancer. Or, maybe it’s just a useful tool to collect my thoughts to share with the array of doctors that have been taking care of me.
There have been several doctors who’ve been privy to the world of the Little Brown Book. All have been patient in the questions posed to them from the lined pages. They have appreciated that the information on the medicine mix I’m using was readily available when they asked about prescriptions.
When I was afflicted with cellulitis after my surgery, the Little Brown Book came with me to the Emergency Ward so that I could be armed with information doctors and nurses needed about my cancer history. It also became the place where my surgeon could write down his personal pager number to be contacted when the condition flared up.
I believe that once you’ve been a reporter, you’re always a reporter. The inquiring mind of a retired reporter has ways of resurrecting when facing the world of the unknown. For me, cancer is the world of the unknown.
My surgeon was the first doctor to be on the receiving line of this old reporter’s questions. There were many questions posed to him with the reporter’s basic queries of who, what, where, when, why and how. Each visit he patiently answered the questions providing information, comfort, and confidence that I was in good hands.
Then there were the various emergency room physicians from numerous visits who likewise faced this old newsgal’s queries with the Little Brown Book in hand. Always professional, the questions were answered with kindness and compassion.
When there have been concerns after hours, the “on call Oncologist” has been guided through my cancer history from notes that have been collected in the book over these past six months. They too have appreciated that the information has been easily retrieved when they have asked me questions about my cancer history.
As can be expected, my oncologist received the most questions when I’d met her for my treatment orientation. Since then, her associate Family Practitioner in Oncology has stepped in as the liaison to the Oncologist to monitor my case. He receives a list of questions each month prior to my next chemo treatment. Both doctors have been very accepting of my questions, and are teaching me so much about this disease by their responses. If I didn’t ask them questions, I would be far less informed about managing my condition.
I am not alone in the questions raised by cancer patients to their doctors. On my last visit to the Family Practitioner in Oncology he would likely substantiate this claim.
“I’m sorry I’m running late today,” he apologized. “In my family practice, I will see 20-25 patients per day for five to 10 minutes each. With cancer patients, the number of people I see in a day is 10-12, because cancer patients have a lot of questions. It’s important that I take the time that cancer patients need to answer their questions.”
The Little Brown Book is part of my cancer history. It is a living diary of my cancer journey. It sits beside my appointment calendar where it can easily be found when my inquiring mind thinks of other “unknowns” that need to be answered.
Despite the “chemo brain,” the inquiring mind of this cancer patient helps to keep me better informed about my treatment. There is less fear when I’m informed. With information and assurance from my doctors, I continue my fight in this cancer journey with Strength, Courage, and Determination.
Taxotere is known to have some severe side effects including allergic reactions. To combat the allergic reactions and nausea, patients are placed on steroids a minimum of 24 hours ahead of time. This will happen with each of my next two cycles of Taxotere treatments.
The steroids certainly were an experience. They made me very hyper. A lot of things got done around the house while I was under their influence. At best, I got three hours of sleep nightly for the two days I was on the drugs. Then there was the crash the next day after the steroids were flushed out of my system.
The crash felt like a hangover, but with drugs instead of alcohol. It was a very strange sensation. I get to have these same steroids two more times in the subsequent Taxotere chemo sessions to come. I can expect similar behavior while taking the drug in the next two-chemo cycles.
The infusion of Taxotere was different than FEC. Patients are infused, observed for allergic reactions, infused again, and then observed for an hour after the injection is completed. This is done only on the first treatment to monitor allergic reactions, and is not repeated with the subsequent Taxotere treatments.
With Taxotere, patients are issued ice gel packs for their hands and feet to constrict the capillaries in these areas. The numbing cold gel packs limit the amount of chemo coming into the capillaries to minimize hand and foot complications. For comfort, the cold was offset with heated blankets and hot tea.
With Taxotere, there is also an increased risk of heart palpitations. To monitor heart function, patients are hooked up to a blood pressure machine the whole time they are infused. The machine periodically reads blood pressure levels, which become part of your patient history for subsequent treatments. My heart function remained healthy and is expected to behave similarly in the next two Taxotere cycles.
Taxotere unlike FEC, does not have the same side effects with nausea and vomiting. In this regard, it is quite tolerable. There has been an increase in acidity levels in my body with my stomach becoming more sensitive with this new chemotherapy. My appetite is still nil.
I now have a constant acid-sour taste in my mouth. Dry mouth has also been more severe with Taxotere, affecting more severely overnight. I have to hydrate my mouth four to five times a night so that I can sleep more comfortably.
As well, Taxotere will rid my body of any remaining hair that FEC did not shed. I can expect that it will strip the hair on my legs, arms, eyebrows, eyelids, face, and head. Chemo fatigue is increasing, and simple daily tasks are getting harder to do.
There has also been a further attack on my white blood cell counts with Taxotere, which has resulted in two different infections and more frequent nose bleeds. Overall, Taxotere has been less impacting on nausea and vomiting, but it has been dramatically more difficult in dealing with the side effects that have come with it.
I only have two more cycles of Taxotere. I’m two-thirds through the chemotherapy phase of my treatment. I will get through the tough times with Taxotere with Strength, Courage, and Determination.
I have always had a high threshold for pain.
I’ve had my spine fused for scoliosis, broke my sacrum, have had multiple surgeries, and got through natural childbirth twice without medication.
With cancer, the white blood cell booster medication’s side effects attack one’s muscles and joints, and are known to cause pain in the legs, hips, and back. The blood booster injections hurt, as do the blood thinners. There is also a burning pain that comes with the release of the blood thinner serum into my body. On occasion, I experience twinges of pain in the tissues and muscles surrounding my mastectomy site as it continues to heal from surgery.
I know pain.
I recognize when pain is upon me because of the restlessness that comes with it. It takes a pretty strong prescription to ease pain when it comes upon me, as my body can be resistant to medication.
When I met with my oncologist prior to my first Taxotere infusion, I was told that I could expect bone pain, especially in my legs. If it was only pain in my legs, that would be easy to handle.
Taxotere pain is different than all of the other forms of pain I’ve had in life. It has its own way of creating pain and testing my toughness. There are good pain days where I experience low-grade pain throughout the day. Then there are bad pain days when I feel like I’m 80 years old because moving is difficult. On these days, walking is slow, deliberate, and focused. Climbing stairs is especially trying.
The introduction of the Taxotere chemotherapy cocktail last week has become a new experience in pain management. There is more pain than previously experienced with my white cell booster medication, and it resides in new places including my bones.
I am learning to live with and accept the pain that comes with Taxotere. It’s part of the cancer journey and part of being treated for it. I now live with low-grade chronic pain in my joints and bones as well as a low-grade persistent headache, both of which have come with Taxotere. Cancer is not giving me pain; it’s the Taxotere and Neupogen drugs that I’m being treated with to fight cancer that are the contributors.
With Taxotere, there are days when each step I take is painful because the muscles in my ankles, calves, knees, hips, and hamstrings hurt. The tibia bones in my legs hurt, my hipbones hurt, my knee joints hurt, and there is fleeting pain in the radius and ulna bones in my lower arms. The degree of pain can escalate to brief bouts of throbbing or searing pain in my joints and bones.
The pain levels vary throughout the day, but tend to be worse in the evening. Tylenol Three’s offer no comfort, so out came the narcotics I was hoping to avoid. I’m trying not to use them as they render me unable to drive because of a fuzzy head, wreak havoc on my digestive system, and can be addictive.
Supposedly, Taxotere pain starts around day four (bang on with me) and lasts four to seven days. The pain was the worst on day four and day seven of this treatment cycle. I’m curious to see if the remaining two Taxotere treatments elevate or extend the pain as more of the chemotherapy absorbs in my body.
I don’t want anyone’s pity for the pain I’m suffering, just patience with me and an understanding of what I’m going through. There are days when Taxotere makes your world topsy-turvy.
Undaunted, I push through the pain and continue to walk on this cancer treatment journey with Strength, Courage, and Determination.