Yesterday, the final phase of active cancer treatment ended with my last radiation appointment. It was supposed to be on January 3, but selected cancer patients were asked to come in on the December 27 statutory holiday so that their last radiation treatment could conclude before the end of the year.
I can now say that the active part of my cancer treatment, which started last February is over. Today marks the first time in over five months that I won’t have some form of daily treatment.
The passive treatment that remains is minor in comparison to what I’ve been through with surgery, celllulitis, chemo, blood thinners and boosters, a malfunctioning chemo port, fever infections and thrush, and radiation. Taking a daily cancer fighting medication starting on the 2nd will be the simplest part of my cancer treatment.
In the next few months, I will undergo periodic tests and scans to monitor treatment efficacy and to rule out other potential cancer concerns that were identified in a CT scan from last summer. I will also have periodic medical check-ups with various doctors throughout the next year and thereafter, to closely monitor my body for potential cancer recurrence. I am hopeful that in the next few months, I will be declared cancer free and in remission.
In reflecting on 2010, I am inclined to say it was a year that I would like to forget. Unfortunately, it will be one that I will remember for the rest of my life. As with all life-changing experiences, this last year dealt out good and bad moments. In the end, what I have been left with the gift of a second life.
On the eve of 2011, I am happy to start the New Year with a fresh start that does not include living in the world of aggressive cancer treatments. Tomorrow, I will renew my membership at the local Y. I am looking forward to developing a new daily exercise routine that includes rebuilding and strengthening my body to recover from the treatments, and to help prevent a cancer recurrence. In February, I will be able to return to the pool once my skin has healed.
More than anything, I look forward to returning to a “modified” new normal life once again. Spending more quality time with family and friends who have become more precious to me because of my cancer diagnosis will also be a priority.
To all those who have journeyed with me this past year, thank you for “being there”. May you be abundantly blessed with the gifts of love, life, health, friendship, and prosperity in 2011.
Next year is a new beginning for me. I will mark its beginning with Strength, Courage, and Determination.
There are countless Christmas gifts I have been given throughout this year that I can’t possibly wrap.
How can I wrap up my gratefulness for a second gift of life? How can I wrap up the gifts of family and friends who have been steadfast in their loving support of me during my 2010 cancer journey? Wrapping of these gifts are impossible tasks.
The only thing I can do is to be aware of the gifts of my renewed life and of the people in it. I don’t know where to begin to express my heartfelt thanks to all of the people in my life. No words can ever express my gratitude to those who have been on the cancer journey with me this past year.
I feel so small in comparison to the enormity of kindness that has surrounded me for so many months. To all of the people who have journeyed with me during this cancer diagnosis and treatment, a simple thank you just isn’t enough, but a million thank you-s can’t come close to the appreciation I feel.
The gifts of love and support from family and friends that I have received throughout this year could not be bought. They are greater than any Christmas present I could ever receive. The givers of these offered the gift of themselves freely to me. They are priceless and deeply cherished.
Christmas 2010 will be a very special one. It will be low on commercialism and high on time with family and friends. Love and joy will take on new meaning this Christmas. We will celebrate the season as it was meant to be, not with things, but with each other.
To all who have been there for me in body and spirit this year, I wish you a joyous and blessed Christmas filled with abundant love. My wish for you is that you treasure the people in your life, for they are priceless gifts.
Christmas this year gives me a whole new appreciation for living in the present. I will celebrate the gifts of those who give me Strength, Courage, and Determination.
I am so relieved that chemo is completed, and the most dangerous and toxic part of my treatment is behind me.
Daily radiation is now the last active part of my cancer treatments. As of this past Friday, I am half way through the 16 radiation treatments that will end on January 3.
In Manitoba, there are currently eight radiation treatment rooms for the entire province, with another radiation treatment facility opening in Brandon in the near future. Most appointments are scheduled at 15-minute intervals. Every room is busy each day treating patients of all ages from across the province.
In comparison to chemotherapy, radiation is much easier to tolerate. It is not at all what I expected it would be. Each day, I undergo two treatments of radiation that are administered on the affected side of my chest and underarm. Each treatment dosage lasts about 30-40 seconds. The radiation is painless and fast.
Medical staff has told me that I can expect to feel fatigue by the third week of treatment, which takes me to the Christmas and New Year’s holidays and ¾ through my treatment cycle. This is also when I may start to see some treatment side effects with my skin.
Staggering Numbers of Medical Caregivers
This second chance that I have been given for life has come because of a big circle of medical caregivers who have walked along side me since last March. All have been patient, kind, and encouraging in this cancer journey.
To date, there have been over 120 medically associated people who have played a role in treating me and cheering me on in the fight against cancer. The medical caregivers include 19 specialists and ER doctors, 37 hospital, chemo and oncology nurses, 35 x-ray and lab technicians, 13 Canadian Cancer Society volunteer drivers (for treatments), several treatment schedulers, six chemotherapy “coffee and cookie” volunteers, a social worker, a dietitian, an art therapist, and a yoga instructor.
The various treatments also have some staggering numbers. By January, there will have been 149 daily injections of blood thinners, 45 injections of blood boosters, 18 radiation treatments, 15 blood work tests, six chemotherapy sessions, surgery, and a central line port installation and removal. Add to this, an array of tests and scans including a mammogram, tissue biopsy, CT scan, Muga scan, MRI, and various x-rays. No part of my body has been left unexplored.
Walking in The World of Cancer
In all of these months I have walked in two worlds of cancer, one of hope and one of sadness. At 51, many times in chemo and radiation wards, I have been the youngest cancer patient as the majority of cancer patients I have been amongst are seniors.
In this journey, I was told that the radiation treatments would bring the world of cancer into a sad reality. It is true. I have come to realize that despite my cancer diagnosis, there are other lives with cancer which are much sadder.
There are so many images of cancer one sees as a patient.
Tuesdays and Thursdays are treatment days for children at the cancer facility. I have seen a worried young mother tenderly hold her bald, jaundiced infant (about 15-18 months old) following treatment, as they waited in the patient transportation lounge for their ride home.
Another child, a girl--perhaps about three years old, was carried over her father’s shoulder as they exited the facility after treatment. A big, strong man, the dad literally and figuratively was carrying the weight of cancer on his shoulders.
A pretty teenage girl, with a patch on her treated eye, was waiting for her ride home while texting on her cell phone with her good eye.
A young, 20 something, wigged female, fresh from chemotherapy treatments, was waiting for radiation at the same time as me. Totally oblivious to the number of people who have been rallying around her to make her well from cancer, she was seen a few minutes later smoking a cigarette outside the treatment facility.
Ongoing Treatments
On Tuesday, I will be grateful to be having my last daily blood thinner injection. I am looking forward to no longer contending with a swollen and welt-filled abdomen. Hopefully this will allow me a few more clothing choices. On Wednesday, I will have my troublesome chemo port removed. It will be a relief to no longer feel the port’s gentle tug on my jugular vein that I have lived with for the past six months. I no longer need sleeping pills, painkillers, and antacid medication as the potency of chemo and related side effects have left my body. Slowly, my body is “resetting” to its new normal.
The active treatment for my cancer will end in just over two weeks. There will be ongoing passive treatments that await me the next few months, along with regular appointments with my oncologist, surgeon, and family doctor. In early January, I will start taking daily hormone blocker medication to help prevent a cancer recurrence.
I am scheduled for another mammogram, and various follow up tests and scans post chemo and to further explore some medical concerns that were raised with my initial CT scan last July. There will be ongoing blood work, another CT scan, another MRI scan, a colonoscopy, an endoscopy, and a dental follow up, which will all take place early in the first part of the new year.
On the recommendation of my oncologist, I will also be pursuing genetic testing to see if I have inherited a breast cancer gene and am a carrier of it in my family. I have chosen to do so to benefit my mother, sister, and children. Fortunately, none of them have had cancer, but could be affected if my genetic testing indicates a family source for my cancer.
Each day, the weight of living with cancer is getting lighter as I journey to complete the last active phase of treatment. Each day, I make a pledge to continue to fight cancer with Strength, Courage, and Determination
Last Wednesday, I had my final chemo treatment follow up with my oncologist. It could be aptly described as a “weight taken off my shoulders” visit.
After six weeks of house isolation without visitors, I was cleared to leave the house and have company.
I can now drink coffee again. Following the appointment, we headed straight to a coffee shop for my first java in six months. It kept me buzzed for several hours--long enough to squeeze in Christmas shopping before post-chemo fatigue set in.
My first radiation treatment starts tomorrow with daily treatments until January 3. My chemo port gets removed on Dec. 22. On January 2nd, I will start a hormone inhibiting cancer drug, which I will take for a minimum of two years.
Early next year, I will have another series of scans to follow up on chemo treatments and some minor medical concerns that arose with my first CT scan last July. The smallest abnormalities that come up with scans are not left to chance once one has had a cancer history.
My new medical routine will involve regular follow up appointments throughout the year that will include my surgeon, oncologist, radiation oncologist, and family doctor. As time passes, and if I stay in remission, some of these appointments will lessen. There will always be oncologist follow-up visits as long as I live. After active treatment ends in early January, general health care will be under my family doctor.
Yesterday, I was finally able to have this year’s flu shot following two earlier postponements due to low white blood cell counts. It was a chance to brief my phenomenal family doctor about my treatments as I have not seen her since she suspected breast cancer last February.
She reiterated that my lifetime of excellent health, exercise, and self-care were beneficial as I went through surgery, chemo treatments, and infection battles. She noted that the positive outcomes could have been otherwise if I hadn’t been very healthy prior to treatments.
In consultation with the oncologist, my family doctor advised that she would determine when I am able to return to work, likely, sometime this coming summer. She ended the appointment with a big hug, and told me that I was “one tough woman” for enduring the cancer treatment experiences.
I am starting to build my “new normal” life in living with a cancer diagnosis post treatment. This is a new chapter of my life that is being written on a blank page.
I will need to exercise at least half an hour a day for the rest of my life as one way of warding off a cancer recurrence. There will be changes in my diet. I will eat even healthier than I have in the past. Food choices now need to be made with more lowered fats, limiting animal proteins, adding more vegetable proteins, reducing/eliminating sugar, increasing whole grains, lots of fruits and vegetables, and little/no alcohol consumption. (Alcohol and sugar can feed cancer cell growth).
I am still dealing with some physical side effects of surgery and chemo. Throughout this odyssey many emotions have surfaced, and more will come as I complete the last treatment phase and create a new life that includes a cancer history. Getting my mind, memory, and word finding to pre-cancer levels would be welcomed.
Many personal relationships have been affected in this journey. I will continue reconnecting with others as part of rebuilding my life. As summer arrives, there will be return to work considerations.
As I move into the final phase of active treatment for cancer tomorrow, a concurrent new phase of post-cancer life is being built. I bravely continue on this journey with Strength, Courage, and Determination.
There is a Buddhist proverb that says: “When the student is ready, the teacher will appear.”
The student (me) wasn’t ready, but the teacher (cancer), appeared anyway.
These past few months have afforded me an opportunity to learn many of life’s lessons since being diagnosed with breast cancer late last winter. I have been a student in life’s classroom with cancer as my teacher. I was not ready for the many lessons cancer has taught me, and continues to teach me.
In the face of potential death, I am learning about life from this life-threatening disease. As with many of life’s lessons, I do not realize that I have been taught something until I look back to where I was at the start of the lesson.
What are some of the lessons cancer has taught me?
Life is sacred.
Each day, I wake up and realize the gift of life I have been given and how I took this for granted until cancer came.
The lives of those who have surrounded me in this cancer journey are gifts to me that I cannot buy, but are freely given out of love. These are the most powerful, most healing gifts one will ever experience in living.
A cancer patient cannot get through dealing with the devastation of this disease without the support of family, friends, and their medical team. My oncology social worker, cancer nurses, and doctors have been the calm in this cancer storm by keeping me focused on getting through each stage of treatment, one step at a time.
Good health is taken for granted. I’d been the model of excellent health until my cancer diagnosis. Years of regular exercise, proper nutrition and a positive outlook got me through the most difficult time of my life with surgery, chemotherapy, and a multitude of complications. Radiation is still to come, starting next week.
Getting through chemotherapy is a lot harder than healing from a mastectomy. Enduring six rounds of chemotherapy elevated my patience and perseverance to a level previously unknown to me. I had no control over how my body would respond to treatments. It didn’t like the chemo invasion.
Early in my treatments, I learned the absolute necessity of being an active partner in co-managing all details of my cancer care, monitoring symptoms, and quickly acting on suspicions. I learned that chemo infection symptoms can be subtle and deadly dangerous.
Chemo’s side effects taught me to trust my intuition more than in the past. On more than one occasion, my intuitive hunches ended up with diagnoses of febrile neutropenia infections. Thankfully, with chemo treatments ended, my risk for infection dives dramatically.
I learned that the will to live is a strong, positive force in my life that carried me through chemo’s challenges. The positive spirit of other cancer patients, and their will to live are inspirational. As sick as I was with chemotherapy, there were other cancer patients around me who were even sicker.
Lastly, living with cancer has taught me is that it’s OK to cry. There have been tears of being overwhelmed, tears of frustration, tears of fear, tears of sadness, tears of pain, tears of regret, tears of relief, and tears of joy. All of these tears in their own way, made the cancer journey easier to bear.
I keep moving forward in this cancer journey with gratitude for my life. Each day, I am stronger than the day before. Each day, I choose to live with Strength, Courage, and Determination.
Eight Long Months of Treatments
Since my breast cancer diagnosis in early March of this year, these past eight months have at times felt like a woman’s worst nightmare coming true. At other times, I felt like I was in denial: “How could I get breast cancer? I don’t have any of the predisposing factors. I feel fine and am not overweight. I never smoked, exercised regularly, and had no prior health problems.”
Yet, it is true. With all I have been through, there is no denying that this cancer diagnosis is real. It has been a long and frightful time in my life.
Once you have a cancer diagnosis, there is a whirlwind of medical appointments you attend with an array of medical caregivers from various disciplines. The appointments can keep you quite busy and preoccupied during the treatment period. Coupled with resting, recuperating, and managing fatigue, one’s thoughts can be pushed aside for extended periods of time. You do what you need to do to get through each day.
Upon the conclusion of chemotherapy, I now have some time to think about my new life in living with a cancer diagnosis. Getting through my last chemo treatment, and owning up to the fact that I now live with a cancer history has been difficult to accept. This reality of cancer, this certainty of cancer, hit with force on Tuesday night.
I was nearing the end of the run of “crappy days,” when chemo makes you feel dreadfully awful for several days after the infusion. It was not a good day. I could feel my Taxotere and chemo fatigue headache making me fade around 9:00 p.m., and decided that the best therapy was to go to bed and get some sleep.
As I lay in bed, I recounted everything I have been through in the last few months. Suddenly—like a gale force wind, a wave of soul wrenching sobs arose from the core of my being.
It seemed that my body had made a pact with me. It had carried me through all of the treatments and complications thus far, but it did not express the sorrow that was stored inside it over the last few months. It seemed that my body waited for the completion of the last chemo treatment, and gave itself the permission it needed to the express emotions it had suppressed for so long.
I believe that our bodies are very wise, far wiser than we give them credit for. They have an innate sense of how to protect us, and when they must do so. They know when to hold back emotions, and when it is timely to release them.
I get through life by “compartmentalizing” details and projects, handling them one at a time. My body appreciates this approach and handles it well. With growing wisdom, I have learned to only focus on the immediate task at hand, otherwise it is too overwhelming. This is how I got through my mastectomy and its complications, and how I got through my 6 chemo treatments and their complications. It will be how I will get through my radiation—one appointment at a time.
Intuitively, I feel that Tuesday evening’s meltdown was my body’s way of releasing and healing itself. The experience sent me a big signal that I had been ignoring--that it was OK to cry about having cancer, and it was OK to grieve for what I am going through. My body was doing what it needed to do to be well emotionally. My emotions had called their “timeout”, after patiently waiting on the sidelines of treatment all of these months.
The Severity of Chemo Infections
Tuesday was a big “reality check” day for me. The experience of having survived four chemo infections with fever since the end of September, and knowing how deadly dangerous these can be had settled in. I am extremely fortunate that each infection did not evolve into a more serious condition.
My sister Jen holds a Bachelor of Nursing degree. She has been not only a loving sister, but also a medical gift to me in this cancer journey.
A few weeks ago, while “watching” me during one of my chemo fever moments, she explained the gravity of being immune compromised as a cancer patient in regard to infections and fevers.
The biggest concern with people receiving chemotherapy is that they are at risk of developing a life-threatening infection called sepsis, which can evolve very rapidly in immune compromised patients. Sepsis is a severe bodily infection that travels via the blood stream, and eventually can become fatal if not treated quickly with broad-spectrum antibiotics.
My sister has seen the symptoms of sepsis in patients she has nursed, and is able to recognize when they are potentially emerging. Her goal of watching over me during one of the early fever and infection incidents was to detect potential sepsis symptoms, and to coach me on appropriate treatment to be taken if I landed at an emergency ward.
If a patient is being treated with chemotherapy or radiation, they need to be especially vigilant regarding possible sepsis symptoms. If they are developing sepsis, they will often have a fever (applied to me). They may also have chills (check this off for me), and severe shaking (check this off for me in one incident), and may develop pain in their joints (check this off for me).
The most common causes of sepsis are bacteria (I had this as a source in one case of infection and fever); viruses (I had this in another case of infection and fever); and fungi (I had this with Thrush infections). Infections in organs, including kidneys [urinary tract infections--I had this with one infection]; and skin [cellulitis--I had this post mastectomy] can also lead to sepsis.
Infections, fevers, and sepsis are seriously scary stuff to a chemo patient.
On Tuesday night, I realized how close I could have come to dying during two of my recent emergency visits with chemo infections and fever. This realization formed the gale force winds that unraveled my emotions. The tears of relief were released knowing that I have survived some very serious situations during my course of cancer treatment.
The Enormity of it All
The enormity of what I have been through is not something I had reflected on until this week. I have been told it has been a lot; an “unusual number of complications” decried my chemo nurses and social worker. Their collective experiences indicated that they have not seen any chemo patients with as many problems as I have had going through treatment. Perhaps it is so.
There was the mastectomy, and its related cellulitis complication. There was day surgery to insert a chemo port, which caused a blood clot and required me to go on daily injections of blood thinner. There have been low blood counts since July, and the requirement to go on blood boosters after each chemo treatment. There have been six chemotherapy infusions.
There have been Thrush infections, and four episodes of chemo infections with fever. My chemo port worked sporadically. It stopped working after my fifth infusion, resulting in using my arm for blood tests and the final infusion. Then there have been the anxious experiences of waiting for hours, several times, in the chaotic world of after hour’s medical care in emergency wards.
As I look back on making it through all of this, I now can accept that I am a gritty gal. I know that I can get through the difficult times in this cancer battle. It has never been easy, and will never be easy. I prefer to call these tough moments “character building” experiences. This character is now comfortable in officially calling herself a “Cancer Fighter.”
Daily, I think about how truly lucky I am to be alive despite all of the treatment side complications I have had. Somewhere, Angels and a Higher Power were working overtime to watch over me.
It is my hope that radiation will be easier and complication free. I am cautiously optimistic that this will be so, but will not be at ease until the treatments are done because of my complications history. I am also aware that I need to still be careful while in radiation treatment, as I will remain immune compromised.
In a few weeks, most of my cancer treatment will be behind me. I look forward to the day when I can be referred to as a Cancer Survivor. I continue to fight to get well with Strength, Courage, and Determination.
At the beginning of this week, I received a call from the cancer treatment organization’s radiation therapy office. They asked me to come in on Wednesday of this week to begin the process of establishing external beam radiation therapy.
I was advised that the treatment is scheduled to begin on December 8, which is two weeks earlier than expected. This date is exactly one month after my final chemo infusion, not six weeks as was mentioned to me previously.
The radiation will end on January 3, barring any unforeseen complications. I now know what I’ll be doing this Christmas and New Year’s—resting and rebuilding my body, as the effects of radiation will be in full force by the last week of December.
There is a whole new team of medical caregivers I will be getting introduced to in this third major phase of cancer treatment. There is the radiation oncologist, whom I had met in early September who prescribed my treatment and the number of sessions of radiation required. He joins with a radiation therapist, a dosimetrist, a medical physicist, and a radiation therapy nurse who will all play a role in delivering my treatments.
It will be a rendezvous of 15 minutes duration at each treatment.
I will have 16 daily dates (Monday to Friday) with a radiation machine that will use x-rays, gamma rays, electrons, and other sources to destroy cancer cells in my body. And like chemotherapy, radiation not only kills cancer cells, it also kills good cells in the body to eradicate cancer.
I can expect to continue feeling fatigued with radiation treatments. I can expect that the radiated area will have some side effects particularly concerning the skin, which could become red, irritated, or swollen. There could also be changes in appetite, the development of anxiety or depression, and disrupted sleep.
This phase of treatment begins with a preparatory “simulation” planning session. Before the scanning and markings session, I was educated on the potential side effects of radiation and how to take care of my body.
For the scanning, the radiation therapist used a machine called a CT simulator to set up the treatment targets. The simulator takes scans of the area to be treated, which enables the radiation therapy team to use them to plan the treatment and decide how to direct the radiation to my body.
The radiation therapist then marked the treatment area of my chest with three dots made in permanent ink (tattoos). These markings form a triangular map that will be followed to ensure sure that the radiation is targeted at the same area for each treatment.
In the mix of radiation treatments, I will also have my chemo port removed on December 22. As with so much of my cancer treatment journey, this is not as simple a procedure as it sounds.
With my chronic low white blood counts, I will have to wait and see if my neutrophil counts elevate high enough to have the port removed by this date. Coupled with this, is a period of time in which I will have to stop blood thinner medication for a few days to prevent bleeding complications with the port removal.
Thankfully, there is one way I can minimize my stress levels in these daily treatments. The Canadian Cancer Society provides a transportation service for patients, run by volunteer drivers. For a very nominal fee, a driver will pick me up in a heated vehicle, take me to the treatment, wait for the treatment to conclude, and then take me home. I need not worry about winter driving and scrambling for parking for just a few minutes of treatment. I am grateful to have access to this kind of service in my city.
There are new steps waiting to be taken as I continue to walk on this cancer treatment trail. Soon, I will enter a new phase of the cancer fight. I will take these new steps with Strength, Courage, and Determination.
It just wouldn’t be a Taxotere treatment without another infection and fever.
As I watched the sad stories of fallen soldiers on television coverage of Remembrance Day services, my body was beginning to fight its own battle.
A low-grade fever started at 11:00 a.m. registering 37.5°. It wasn’t a totally accurate reading as I had taken painkillers with acetaminophen for side effects earlier that morning. The temperature hovered at 37.5° for a few hours. At 4:00 p.m., it had climbed to 38°, the level in which chemo infections and fever become a life-threatening medical emergency.
Having been through febrile neutropenia (fever with low blood counts and no immunity to fight infection) three previous times since September 27, I knew I needed to continually monitor my temperature to see if it would remain constant or climb. After an hour or more of 38°, chemo patients need to have the condition addressed by a doctor.
History was predictably repeating itself with this final round of Taxotere.
In early October, on the fourth day after my second Taxotere treatment, I spiked a fever because of an infection. I had a fever with some kind of infection again on Day four of my final Taxotere treatment.
Typically, chemo patients can expect their white blood cell counts to dive on the eighth day of treatment while on Taxotere. For me, the white blood cell counts dipped on Day four of the last two treatments.
Drawing on the past infections, I took my temperature every half hour. Each half hour it was climbing by .1°, an indication that there was definitely an infection somewhere in my body. By 6:00 p.m. it was 38.5°. It was time to call the oncologist on call for treatment directions.
The doctor told me to rush immediately to an Emergency ward as I was in a life-threatening state because of low blood counts, an infection, and a previous history of febrile neutropenia with chemotherapy. I was told to advise the admitting staff that I needed to be seen a.s.a.p., only to be bumped by someone having a heart attack or some other grave emergency.
The treatment hospital I have been going to previously when I had complications had me wait 11 hours, six hours, and 11 hours until the Emergency check-ups were completed. I needed to make a tough decision: which hospital’s emergency ward do I go to? Do I go to the larger hospital where the chemo treatments were, as they could access my medical file? Or, do I go to a local, smaller neighborhood hospital where I might be seen sooner without my patient history?
The doctor on call suggested that a smaller neighborhood hospital might be a better choice. They noted that any emergency doctor seeing me would be able to treat the infection with anti-biotics. Given the poor emergency response times with the treatment hospital I had visited in the past, I chose to go to a smaller hospital, which was closer to home.
When we arrived at Emergency at 6:30, my fever climbed again to 38.6°, and my blood pressure was soaring. The nurse had to take it three times to get a level; each time it was different. I was so hot with fever that my face was flushed, and my ears were beet red.
As directed by the oncologist on call, I advised the admitting desk that I needed to be seen as soon as possible as my febrile neutropenia was a medical emergency. A nurse who knew little about chemotherapy complications assessed me within a half hour of arriving.
They got this part of the chemo emergency protocol right--I was put in an isolated examining room 15 minutes after intake. The other critical assessment component with chemo patients, fever, and infection is that they are to be seen by a doctor within ½ to one-hour maximum after arriving at the Emergency department. We waited two hours for the doctor to do their initial diagnosis and start anti-biotics treatment.
Blood and urinalysis tests were taken, blood cultures were drawn, and my throat was swabbed. I was given oral antibiotics and Tylenol to address the infection and fever. The test results were supposed to be available within an hour; we waited over two hours.
When the results did come back, they confirmed an infection. I was given a prescription that could be filled the next morning. The complete visit took 4.5 hours. This was better than the 11 hours we had waited with an earlier episode of febrile neutropenia a few weeks ago at the treatment hospital.
The next morning, my husband dropped off the anti-biotic prescription at the drug store. An alert pharmacist flagged a drug interaction problem with the prescription because of other cancer and chemo complication medications I have been using. The prescription could not be filled until contact was made with the prescribing doctor.
The pharmacy had faxed the doctor the info at 8:30 a.m. Not hearing back from the pharmacy by late morning, I called to see if the doctor had responded to the prescription issue. They had not, so I asked my oncologist to contact the pharmacy to ensure I got the required medication. The oncologist resolved the issue with the pharmacy by early afternoon, and the prescription was dispensed.
After the prescription was settled, I was finally able to have another dosage of anti-biotics at 3:00 p.m. It was 19 hours since the previous dosage, a scary scenario with low white blood cell counts and a confirmed infection.
I find this drug interaction incident particularly disturbing. I had thoroughly briefed the ER doctor about the anti-biotic medications I have been on previously, so that they could be familiar with my history before issuing the prescription. They also had a computer printout of all of the medications I have been on since treatments started.
This mix-up leads me to assume that the medications history was not thoroughly read by the doctor before the problematic prescription was issued. It makes me wonder if I’ll go back to this Emergency ward in the future.
Bump on Bump
An hour after I took the anti-biotics yesterday, another hell had started. Severe pain side effects were creeping in because of the chemotherapy and blood booster drugs I am on. Generally, I have a high threshold for pain (I had two natural childbirths without drugs), but had to resort to taking a potent painkiller to get relief.
The Taxotere chemotherapy concoction I’m on can cause muscle and joint pain a few days after treatment. The pain lasts four to seven days. As well, the blood booster medication I am using can create bone pain when white blood cell counts start to elevate in the bone marrow. For most people, the bone pain usually occurs in the lower back or hips.
By 8:00 last night, the pain from both drugs had escalated. My tibias had intense pulsating pain. The Achhilles Tendons in both legs were throbbing. My left kneecap was aching, and the top of my foot around the toes was tender to touch. The pain in my hips made me restless, making it difficult to find a comfortable resting position.
The compounding effect of the pain from all of these areas made it difficult to walk. To relieve the symptoms until I could take another painkiller in an hour, we decided that a hot bath might help.
In our house, the trip from the couch to the bathtub is less than 30 feet. The pressure to walk from all of the pain made the trip excruciatingly difficult. I could not bear weight on my feet because of the sore Achilles tendons and could not stand tall because of bone pain. To walk, I had to use both walls in the hallway to support me as I shuffled to the bathroom. Tears of pain washed my face. It has been a long time since I felt this kind of pain.
I was able to take a double dose of painkillers after the bath. Sixty minutes after the searing pain incident, the painkillers started working, and all was well.
The pain side effects will lessen in a few days as I move farther away from the last treatment date. In all, I have 10 more days of potential side effects with low blood counts from this Taxotere treatment. After November 23, I should be past the dangerous period of being infection prone. My life and health should slowly start to get better.
In the meantime, I am vigilantly watching for any potential side effects. The end of chemo treatment counts down one day at a time. I continue to fight my battle with breast cancer with Strength, Courage, and Determination.
As of yesterday, what I can now say about Chemotherapy is: “been there, done that.” Chemo is officially over.
I have waited 20 weeks for the day that my chemotherapy treatments would be finished. That day was yesterday, Monday, November 8. It was another milestone for me on this cancer journey to wellness.
The treatments should have ended two weeks ago, but I had two one-week treatment postponements along the way due to low blood counts.
I am so glad that this major phase, the second pillar of four in my cancer treatment plan, is done. The relief in being finished with chemo has lifted a heavy burden from my family and me. It was far more difficult than I had ever expected with all of the medical issues that arose with treatments.
Its now healing time to let the last of the Taxotere flush out of my body over the next six weeks to prepare me for my third phase of treatment. Phase three will be 16 rounds of daily radiation, which will likely start at the top of Christmas week.
Hopefully, this final chemo treatment and recovery will have fewer complications than last month.
Preparatory Steps to Get Me Through the Final Chemo Round
My doctor, oncology nurse, and chemo treatment nurses all rallied together to prepare me to be physically, mentally, and emotionally strong and healthy for the last round of chemo. Their mutual goal was to try to offset the potential for serious complications as experienced with the other two cycles of Taxotere.
As hard as it has been, the doctor’s recommendation for house-imposed isolation three weeks ago seems to be working to keep me well. Since the isolation, I have not acquired any other infections. I have not had visitors, have not been out in public (except for medical appointments with medical masks and surgical gloves to avoid germ contact), nor have I been in contact with people who could potentially transmit viruses and bacteria, placing me at risk to get sick and unable to fight off the illness due to low blood counts.
As a precaution, we are maintaining the isolation for three more weeks until this last treatment cycle is over.
After starting a new drug early last week after chemo was postponed due to the lingering Thrush infection, the condition finally cleared on the weekend. I had peace of mind going into the treatment without a throat infection. As an added benefit, my body had an extra week to further increase its white cell blood counts to make me stronger and better able to handle the treatment.
I will be on an extended cycle of blood cell boosters after this chemo for 10 days instead of the seven days that has been previously prescribed since the first cycle of chemo. The increase in the dosage from the second cycle has been repeated for this last series of injections.
Generally, most chemo patients don’t need the blood booster injections after the final round of treatment. However, my history of low blood counts and multiple infections (some with fever) despite blood boosters warranted an extra post treatment series of blood booster injections.
With this cycle of blood booster shots, I will start them a day earlier on Day three, which is five days before blood counts expect to dip on Day eight. I will have two extra days added to this month’s injection cycle, which will take me through the period when blood counts are the lowest (up to 15 days after the treatment). This is an insurance step to make sure that my body is stronger to heal better after the final chemo, so that I am in a healthier state to start radiation treatments.
The Final Chemo Day
With all of these pre-treatment precautions, my anxiety levels about the last infusion were lessened by the time I got to the chemo appointment. My medical team and I are hoping that all of the precautionary measures taken will have placed me in a better position to get through the final Taxotere infusion.
As has been the course of this up and down journey, the final round of chemo did not come smoothly. The past two times that I needed to have blood drawn to get my blood levels before chemo, saw my central port fail to work. The chemo nurses diligently tried to get the line working with blood thinner flushes, but to no avail. My blood had to be drawn the traditional way through my arm.
The last chemo treatment I had posed a difficulty to get the port working, but somehow with a lot of manipulation it did co-operate. That was the last time it worked. Consequently, because of the malfunction of the port in the last two blood tests, yesterday’s last chemo treatment was done intravenously through my left arm.
I am scheduled as a priority patient to get the port out as soon as possible, as its no longer needed and can continue to pose a risk for blood clots. Because of the history of a blood clot with the port and other blockages, I will remain on daily blood thinner injections until the end of January, six months after it was installed to ensure that there are no more clotting problems.
Yesterday’s Taxotere infusion threw in some new subtle symptoms with treatment.
The preparatory steroids I took a day and a half ahead of time made me so wired that I did not sleep at all the night before. I finally crashed with exhaustion chills about 40 hours later after 9:00 p.m. last night.
Another possible small side effect with steroids is the potential for an allergic reaction with facial flushing. Off and on during the day, I looked like I was blushing with embarrassment until the level of the steroids finally passed through my system.
Today is Day two of the treatment cycle. So far I am feeling well, but tired from the steroid crash. Typically, I will start to feel the effects of chemo on Day three as this drug has a delayed slow-release action over a number of days. The worst of the symptoms typically will run about 10-14 days starting in the next day or two. By the third week of the cycle, I generally will feel better; have increased energy, and a returning appetite.
I am much calmer today, now that the chemo treatments are completed. I continue to travel further along this road of cancer recovery with Strength, Courage, and Determination.
To say that one’s life changes with a cancer diagnosis is a truism, but it is understated. Your world as you once knew it also changes.
I now find myself dreaming less about the “big” things in life such as traveling and retirement because I don’t know if these will come to be. Instead, I’m focusing on the daily things in life that bring me joy. Many are simple things that are easily attainable and don’t rely on my state of health to appreciate.
Since my cancer diagnosis and then more so since placed in isolation on October 19, I’ve had a lot of time to reflect on my life. I spend many hours alone at home while my spouse works along with my adult children who have left home to make their own lives with their mates.
Today, I’m thinking positive thoughts and reflecting on things that bring me joy each day. Here is the beginning of a growing list that I have compiled of where I find joy in my life:
The Power of People
-My Family
-My extended family
-Friends
-Coworkers and colleagues
-Readers of my blog and the comments they send
-Cards, emails, presents, flowers and phone calls from these folks
-Family members who have come with me to chemo treatments and multiple medical
appointments
-Hugs from loved ones
-Baby giggles that shake their bodies
-The antics of little children
-Smiles on people’s faces as they greet you, even if you’re unknown to them
-Members of my cancer treatment team
Nature’s Nourishment
-Walks at Oak Hammock Marsh
-The mesmerizing effect of lakes and rivers that calm
-Sunrises and Sunsets
-Leaves changing color
-The first fat, fluffy flakes of snow
-Hoarfrost on trees
-The first buds of green in spring
-Summer gardens
Sensory Sensations
-(longing for) soothing scalp massages from my hairstylist Jen
-Flannel sheets
-Down comforters
-Bubble baths
-Massages
-New gel bead pillows that cradle my neck and shoulders, a gift from my sis-in-law
Theresa
-Running my fingers through my ½” of mostly white, kinky, baby textured fuzzy hair
that’s hugging my head as it starts to grow back
-The Sound of Music, my all time favorite childhood movie
-Music recordings that feature flute and harp
-Vintage jewellery
-Live symphony and ballet concerts
-My old sheepskin slippers
-The smell of freshly laundered clothing
Foodie Fixes
-A nightly cup of tea with my hubby and kids if they’re home
-Spending time in my renovated kitchen
-Fresh Figs (discovered earlier this fall)
-Smells of homemade baking
-Home made dinners that are gluten free, low in acid, and have had proper “chemo” food
handling procedures
-Hazelnut hot chocolate (a new discovery with chemo as a drink I can actually tolerate)
-Gluten free pumpkin pie tarts and chocolate chip cookies, treats from family members
who discovered them in a local neighborhood bakery (thanks sis’s Jen & Theresa)
-The Food Network and new recipes to try
-Farmer’s Markets and the array of locally grown fresh foods
It will be the joyful things in daily life that will continue to give me pleasure in this journey with cancer. I place one foot in front of another and keep walking through my treatments with Strength, Courage, and Determination.
October was the most difficult month for me, in this, the eighth month of my cancer journey. It beat out the mastectomy surgery in April, and the cellulitis infection in May. They were trumped this past month by three Taxotere infections with febrile neutropenia (fever and low blood counts), and three episodes of Thrush. All of these chemo complications tested my mettle and my patience. I’m glad that month is over.
Through all of this, I came to realize how quickly I could get seriously sick (there is a potential for fatal sepsis with febrile neutropenia), and how few defenses I have to fight infections with low blood counts because of chemotherapy.
In all of this, the phrase “life is fragile” has taken on a more profound meaning for me. Life is even more delicate when you have cancer and are fighting chemo side effects to get well.
The ongoing medical visits with an array of doctors always make me leave thinking I am lucky to be alive with this cancer diagnosis. The visits remind me that I am living on “borrowed time” with a life-threatening illness. Cancer is always on my mind, and always will be. As a cancer patient, you just don’t know how long you have to enjoy the blessings of life in family, and friends. But then again, do any of us really know how long we have in our lifetime? We’re all living on borrowed time.
Delayed Chemo and the Countdown to Conclusion
Earlier this week presented a mixed blessing. My final Taxotere chemo session on November 2 was postponed to the 8th because the Thrush infection had not cleared. I’m now on another potent anti-fungal medication to rid my body of it so that it’s clear for chemo on Monday. I’m glad that these extra six days will boost my low white blood cell counts higher, so that I am stronger to deal with the side effects of the final chemo.
The oncologist has warned that this last cycle would be rough, based on how my body has responded to the first two cycles of Taxotere. My body’s reaction to the drug has been severe enough that an alert has been placed in my patient file. It informs all members of my treatment team, including the oncologists on call, that should I spike a fever (febrile neutropenia) or other complications, immediate action is required because of my previous histories of infections with Taxotere in the past two treatments.
Since my last Taxotere treatment, I have learned that this chemo drug and the FEC that preceded it are the strongest drugs administered in the 100-member family of chemo cocktails. They are also the most effective to treat breast cancer. Because of their potency, breast cancer patients will only ever receive FEC and Taxotere once in their lifetime in the hope that they eradicate cancer. If cancer returns, the treatment modality will involve different chemo drugs.
The chemo treatments that were once far away in months, and then weeks, are now down to days—four days from today to be precise. I am anxious, worried, scared, restless, nervous, and terrified about this last treatment. I just want the treatment and the three weeks of side effects that follow it to be over.
A thermometer to monitor my temperature, will be a constant companion during this time. Four weeks from now, I will breathe a big sigh of relief. Chemo will finally be over, rest and recuperation will be welcomed as I wait for radiation to start, likely at the top of Christmas week.
Dr. “Fabulous” and the Sixth Month Check-Up
Yesterday, I had my sixth month follow-up check up with my surgeon, whom I call “Dr. Fabulous”.
He and I have spent a fair amount of time together these past few months. We have built a good patient-doctor rapport. He was the one who tenderly broke the news to me about my cancer, prepped me for my mastectomy, did my surgery, and then treated me multiple times for the cellulitis post-surgery complication. We now stay in touch with periodic medical appointments to check my progress.
The good news is that he is pleased with how well my incision and body is healing from the mastectomy.
He is always patient, kind, reassuring, gentle, open to questions, and is never condescending. He is a doctor who looks you in the eye when he talks, and speaks candidly about one’s life in living with cancer.
“You can never rest on your laurels with breast cancer,” he said. “It’s one of those diseases that can come back even while you’re in chemotherapy, radiation, or undergoing Tamoxifen treatments. Although it’s rare that cancer will recur while in treatment, it still can. You have to be vigilant in self-exams for the rest of your life.
If anything comes up that you’re concerned about, call me at anytime. We can check it out, and if there’s nothing there then you have peace of mind. If there is something suspicious, then we can act on it quickly and early.” Dr. Fabulous. Enough said.
He noted that breast cancer patients have come back with recurrences within a couple of years, and as long as 25 years after their first diagnosis. The first few years after a diagnosis are the most critical for recurrence. As well, there is a small risk that the toxicity of chemotherapy treatments given to breast cancer patients can cause leukemia.
The clock keeps ticking to reach the time of the final chemo infusion. I am mustering every ounce of courage in me in these next 96 hours as I await my last Taxotere treatment. I boldly move forward with Strength, Courage, and Determination.
On Friday, I finally got some good news from my oncologist. The results of the MRI scan that I had two days earlier came back early—it was supposed to take 10 days. The liver lesion that the doctors were concerned about being possibly cancerous is not cancer. Did anyone hear my big sigh of relief at about 12:15 p.m. Friday?
Unfortunately, in that same visit, I learned that my white cell blood counts from my pre-chemo blood tests taken that morning were “acceptably low,” despite the increased dosage of blood count booster I have had concurrent with my fifth round of chemo. I am also battling a third round of a Thrush mouth infection, which isn’t clearing because of low white blood cell counts.
To top it off, my chemo infusion intravenous port was giving the treatment nurses grief for the fourth time (it’s been blocked for 4 out of 6 blood tests) because it keeps getting blocked, thus causing problems for blood work and my chemo infusion.
The oncologist was non-committal on Friday, when we discussed my next and last round of chemo this week. He has asked me to return to the cancer treatment ward tomorrow for more blood tests to see if I can have my sixth and final chemo infusion on Tuesday. Intuitively, I think that the Thrush has to be cleared and they want my blood counts to be higher as Taxotere has had such dramatic side effects with me. It’s not looking good for knocking off the last treatment this week.
I suspect I will be delayed for a week given the problems I have had with Taxotere this past month. This is familiar—it happened to me with my first of chemo, delaying the next treatment by a week.
The Sensations of an MRI Scan
Prior to the scan, I was concerned that the metal pins in my back from scoliosis surgery 38 years ago might get dislodged or cause problems with the magnetic scanner. All was fine.
The body sensation of being in an MRI was not as scary as I thought. It’s actually kind of neat. It is nothing like any medical tests I have ever had before.
You are rigidly positioned and locked into place, so that your body stays motionless during the scans. Because of my anxiety about being held in a very small confined space, I was given a double folded washcloth to place over my eyes so that I could not see my surroundings.
The room is warm because of the power being used to operate the scanner.
There are different kinds of breathing involved with MRI scans. There are deep breaths, exhales, and holds. There are controlled and even breaths. Sometimes you hold your breath for a short while, other times it is longer. The breath holds were anywhere from about 25 seconds to slightly less than a minute.
Sometimes you breathe normally, as the magnet moves around your body taking “slices” of images of the area they are focusing on to get a proper diagnosis. Other times you have to stop breathing and stay absolutely still, so that the sensitivity of the magnet is not disrupted for specific scans.
The breath work was somewhat difficult for me, as the blood thinner medication and chemotherapy drugs can make me short of breath. I was exhausted, light-headed and dizzy when the half hour scan was over. The technician told me that this is not uncommon.
Beeps, Bangs, and Bloops: The Sounds of an MRI Scan
Regarding the experience of being scanned by the MRI, it is definitely an “auditory” event.
The MRI machine is loud. You are given industrial quality padded headphones to protect your hearing, and to listen to the technician giving you breathing cues that correspond to the kind of scan they are doing.
One enters the MRI scan room to a constant sound that is similar to that of an oversized loaded washing machine, coupled with a high-pitched bird chirping. This is the MRI’s motor running in the background at all times.
If you’ve ever had an MRI scan, you’ll identify with some of its unusual sounds. There are bleeps, bangs, and bloops sounds when you’re in the tunnel of the MRI machine.
The magnet’s scanning sounds are similar to ones you’d hear in base tracks of techno pop music. Others may say that it is like attending a new music concert where contemporary composers play with technology to create lyric-less sounds with music.
The low bass electronic sounds of the magnet generally move quickly and constantly, but they occasionally may be lower and slower. The sounds can be rhythmic, sporadic, or may be measured in beats as the magnet moves around your body to collect several images of the area being scanned.
Here is the basic sound that many of the MRI scans will have:
http://www.youtube.com/watch?v=8oI9YnhPNcQ
Different types of MRI scans produce different kinds of sounds. While in the scanner, I could hear how the sounds could be incorporated to make music. Someone has done this using the MRI’s bass sounds to form the music bed for this recording:
http://www.youtube.com/watch?v=3m4kFu2H0qQ
At one point during the scan, there was an image recording that was six minutes long. This scan had a stereo sound quality to it; I had a low beat in one earphone, while the other one was played in sequence with a lower loud bang. When that scan was over, I had a horrible headache from the constant banging. Another scan not only had shrilly and rapid sounds, it shook my lower body as it made what felt like a 360° scan of the area around my liver.
Near the end of the scan, a nurse comes in to inject a contrast die into an intravenous that was placed in your arm prior to the procedure. The dye leaves a bit of an after taste in your mouth. Upon entering your bloodstream, the dye initially is very cold and then makes you hot as it spreads throughout the area being scanned. As well, the dye can make some people quite nauseous after injection, which is why patients are told not to eat and drink for four hours before their test. I sailed through all of this with ease.
As I was leaving to go home, the nurse told me that my oncologist could look at the scans on their computer the next morning. I marveled at the wonders of technology in medical equipment and computers. She said that the radiologist’s assessment report would be available in 10 working days. My doctor had results within 36 hours. I don’t know this for sure, but perhaps cancer patient scan assessments are a higher priority due to the nature of their life-threatening illness.
My mind is very focused on getting through my final Taxotere treatment and moving on to the next chapter in my life in healing from chemo and preparing for radiation treatments. I am nervous and worried about the last treatment, but I will get through it with Strength, Courage, and Determination.
Yesterday, I received my last pay cheque. It was another downer to deal with this week.
Included with it was a record of employment that said I was officially off the company payroll and on leave without pay as of October 13. It noted that the return date was “unknown”. A courtesy letter explaining the circumstances around the issue of the record of employment would have been helpful to lessen my anxiety.
My heart sank when reading the “unknown” line; it was an emotional “ouch.”
I thought to myself: “Gee, I didn’t get fired, laid-off, end a term, or leave my job for employment elsewhere, why the record of employment? I’m on sick leave with a doctor’s note to treat a life-threatening illness. If all goes well, I should be back at work next summer. I’ve been on long-term disability since October 13, and can’t collect employment insurance benefits. Am I supposed to do something with this form?” I am still confused about what to do; eventually I will figure it out.
My sickness has relegated me to just another name and number in the work world, evidenced by getting a standard issue form without an explanation. Such are the realities of living with cancer. The reminders are everywhere.
Pity Party for One
The waiter at the restaurant had placed a reserved sign on the table. “Pity Party” it read. Instinctively, he knew where to place me. I was the only person at the table.
It’s hard for people to be around cancer patients, particularly if they are going through some rough days. I cannot blame them; I don’t like “me” either when I have the chemo blues.
The news that I needed to be isolated for my own benefit earlier this week was hard to accept. I was so disappointed that my body let me down again to the point where I have to be kept away from others to be well.
Like all new things that come into my life unexpectedly, I needed a few days to process and accept the changes that chemo isolation brings. (This is not new behavior for me when change comes, I need time to accept and adapt. I just did not recognize it as easily this time because the change wasn’t a new task, but a new situation.) I’m adjusting to the isolation, albeit slowly.
Yesterday afternoon, I decided it was time to move past the self-pity and embrace being shut in as a new part of my life. To get through this last chemo treatment, I know that I need a more positive attitude--the isolation is only temporary.
New Ways to Celebrate the “Ups” in Life
There is still so much for me to be grateful for in my life, despite the daily struggles in living with this disease. I reminded myself that I can still celebrate the “ups” in my own life and the lives of others while isolated, I just have to find new ways of commemorating using technology. The electronic media and gadgets of the 21st century are a bonus for this.
Here are the “ups” in my life this week:
-The unfailing love of family and friends who are with me for the long haul in this cancer journey on good days and on bad days
-I am starting to feel better--the infection fighting drugs are working, blood counts are rising, digestive acids are decreasing, my appetite is coming back, and I can drink water without heartburn
-My hair is starting to grow back; it is about a ¼ inch long
-I still have eyebrows and eyelashes
-I have not been on painkillers for four days
-I reconnected with an old friend in Calgary this week that shared the excitement of her going on a three-month “voluntourism” trip to Uganda today
- I had stocked up on sewing and craft supplies to stay occupied when energy levels permit (intuitively, I knew that I might be more housebound as chemo sessions progressed, so I prepared)
-I have started making Christmas presents to return to a less commercialized celebration this year; we are going to focus more on the gifts of family and friends in our lives, which no one can ever buy or replace
-A close friend’s daughter is feeling better after having an extended illness since the summer
-My sister and her mate bought a new house and I was the first one she told
-I updated the cable package yesterday, which will make TV more tolerable—“so long” to reality shows, soaps, Oz, Phil, Oprah, and Ellen and “hello” to more intellectual offerings that extra channels provide (or more channels to sleep by)
Each day I get a little better and stronger as I count down to my last chemo treatment in just over two weeks. I imagine myself donning red boxing gloves to fight this last round with Strength, Courage, and Determination.
I am beginning to think that I am sounding like a broken record. My mother says if it I didn’t have bad luck; I’d have no luck at all.
On Monday night, I had yet another episode of fever and some kind of infection brewing. This is the third infection to attack my body in four days since my Taxotere chemotherapy treatment eight days ago.
I ended up going through the drill of contacting the oncologist on call, explaining the symptoms and getting yet another prescription. Fortunately, it was the same doctor with whom I had a conversation Friday night about infection number two, and who also issued a prescription for the second round of Thrush in my oncologist’s absence on Thursday.
On Tuesday, I had a previously scheduled follow up check-up with my oncologist because of the first two infections. He believes that this third Taxotere infection came from a virus that I came into contact with, as I was already on anti-biotics.
Consequently, he recommended that I stay home and away from people (especially children, babies, and those in contact with them), and not allow anyone into our home. I am only to leave the house for medical appointments wearing a mask. My flu shot had to be cancelled until my white cell counts are high enough to rebound from it. Social and cancer therapy appointments were cancelled. All of these precautions are taking place because of low blood counts and a compromised immune system.
I am highly susceptible to becoming very sick if in I am in contact with others who are sick or have been in the presence of others who are sick.
To understand how susceptible I am, the oncologist said that being in the presence of someone who has sneezed could make me very ill. (A sneeze emits about 40,000 droplets into the air and can be loaded with viruses if the person who expelled it is sick. These potentially contaminated droplets can be airborne for several hours, and can be housed on clothing, paper, room surfaces, steel, and plastic in the area of where sneeze took place or elsewhere via air travel).
While at the appointment, the oncologist mentioned that for my second Taxotere treatment, he had dropped the strength of my dosage by one-third because of the infection complications I had with the first infusion of the drug. We are watching to see how my low blood counts bounce back with the second cycle, to determine what will be done with my last Taxotere treatment. The dosage may need to be adjusted again.
I was scared of Taxotere a few days ago, I’m now terrified of it.
Undergoing my final infusion is pre-occupying my thoughts a lot and for good reason: my oncologist forewarned that the final treatment would be a rough one to get through with Taxotere complications.
I am in my second week of being on Taxotere, round two. There are new complications since the first cycle.
I am cold in the middle of the day, most days. I am particularly cold in my hands and feet (”frozen tundra feet”), while my legs, face, and eyes feel like they’re on fire without a temperature. My feet and hands will take hours to warm up after several layers are put on and I go under blankets, all part of the side effects on my circulation with Taxotere.
My nails are starting to discolor, forming dark red spots on the tips. I have developed a strong case of heartburn that has made it difficult to drink any kind of fluids—even water or lemon-lime soft drinks. I now have a prescription to reduce the acid in my system so that I can tolerate fluids, and hopefully counteract some of the food that has been irritating my digestive tract.
For the first time in five treatments, I looked like a cancer patient this week. I have circles under my eyes, my complexion is white, and I have the pallor that one sees when people are fighting cancer. Overall, I feel awful as I try to rebound from the chemo, deal with anti-biotics in my system, headaches, and the general achy ness that comes with chemo.
I shudder to think that with low white blood cell counts and related infections, that there is a possibility that I can get really sick with a condition called Sepsis, due to my inability to fight infection. Sepsis is a bacterial infection that can come on quickly. It is caused by an infection which rages through the bloodstream, and completely overwhelms an already fragile immune system. It can originate anywhere in the body.
My footsteps are a little heavier these days, but I have to get through this final infusion. I will do so with Strength, Courage, and Determination.
I’ve adopted a new mantra these days: one more chemo to go, one more chemo to go, one more chemo to go….
I wish it was that easy, but it is not.
I had my second Taxotere infusion earlier this week. The outcome has been very emotionally trying to deal with. I got really sick again with low blood counts two days after treatment, which is earlier than was expected.
This is the third time in five chemo cycles that my blood counts have plummeted, even with blood booster medication. My body has gone through so many trials and tribulations with Taxotere. This is a brutal drug at work in my body.
Before my blood booster could be administered for several days (it starts on day 4 and ends on day 10 of each chemo cycle), I developed a fungal infection called Thrush, again, on chemo day three, and another fever and different infection on day four. Now Taxotere is giving me low blood counts. Again.
“Oh no,” I thought to myself. “Here comes 11 more hours of sitting in the Emergency Ward waiting to be seen.”
The oncologist on call was contacted, as is standard protocol when a chemo patient is running a fever after work hours or on weekends.
“What are your symptoms? How high is your fever?“ he queried. “Hmm, it’s a bit early for Thrush or a fever.”
“Yes, but I got Thrush on day 6 of the last Taxotere cycle, and a fever and infection on day 7.”
“Well, we‘d better deal with this. It sounds like an infection may be starting. We’re not going to put you through waiting in Emergency to be seen. But, you do need a prescription for some anti-biotics to start treating the infection“ he replied. “I will call a prescription into your pharmacy so that you can stay home and rest. Stay at home, rest, and avoid contact with people and crowds.”
I’ll take this small victory in not having to be seen in an Emergency Ward this time. There was no waiting to be seen for hours on end. Halleluiah! Thank you compassionate oncologist.
I’m getting more scared about Taxotere and its effect on my body. Every time my blood count dips, I am at great risk of infection as I have very few infection fighting blood cells. My last Taxotere infusion is on November 2. I hope it goes smoother than the first two.
I am trying to be brave over these next two weeks to get through the final chemo treatment. I do so with Strength, Courage, and Determination.
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.