If chemotherapy is my friend, then the boredom that comes with it enters into my life as an uninvited guest.
Living with chemotherapy’s mental downside is that you enter into treatment with too much time on your hands.
For me, filling long hours each day is more difficult than actually coping with a cancer diagnosis. I can now understand why some people purposely choose to work while in treatment; they’d go stir crazy otherwise.
My next door neighbor who is also in breast cancer treatments and is waiting to enter the world of chemo, mused the other morning that as professional women when we’re at work we think about all of the little projects we’d like to do if we had spare time on our hands.
With cancer we do have spare time on our hands, but it’s the kind of time that doesn’t lend itself to working on projects that have been left on the backburner. It’s hard to attend to the projects wish list when you’re recovering from surgery, attending a barrage of medical appointments and tests, and being kind to your body as it undergoes the shock of poison pulsing through it with chemotherapy.
My chemo is 18 weeks long. That means that I have 18 weeks to fill my time with. That’s a lot of time on my hands.
While awaiting surgery and feeling well, I attended to the “projects list” in my house. I had six weeks of waiting, and then several more after that once I recovered from surgery, while waiting for chemo. A lot of that time was also filled with planning our daughter’s wedding shower and helping with wedding plans. It’s pretty well wrapped up with the wedding less than two weeks away.
For me so far, the most difficult struggle is the lack of routine that comes with fighting cancer. Your loved ones and friends get up every day and go to work. They maintain their routines, social circles, and contact with the outside world. They come home feeling that they have accomplished something each day by being in the world or work and solving problems that need their skills, energy, and attention.
With chemo, you live alone each day. There is no routine because you don’t know how you’re going to feel. You spend many hours each day alone wondering how to occupy your time. You don’t have a plan for your day, so you don’t feel like you’ve accomplished anything.
You feel cutoff from people. It’s understandable. You’re told while undergoing treatment that you have to restrict your presence around crowds and public places because of the potential risk of germs and lowered immunity.
People want to respect that and know that you are needing to cope with your illness. They’re afraid to call because they fear you’re resting or sleeping and don’t want to intrude.
They also know that their contact with you can potentially pose serious health risks for you while undergoing chemo treatments. Chemo drugs can also be toxic to others around you for the first 48 hours, so the patient and those with them in this time have to take precautions to prevent those who do not need chemo from being exposed to it.
Some folks are scared to be around you because they don’t want the physical proof that you are not only sick with cancer, but getting sicker with chemo. They simply can’t deal with the mirror of someone else’s mortality being placed in front of them, which in turn forces them to look at their own mortality. A cancer diagnosis does not give you the option of when to hold the mirror of mortality in front of you, you hold that mirror in front of you daily.
I have always been a goal-oriented, driven Type A personality that did not have idle moments on my hands. In reflecting on my life, I’ve spent the last three decades building a career, working full time (except for brief breaks with childbirth and toddlers), raising a family, and running a household. There was little time available to develop hobbies, so I don’t really have any.
The one hobby I do have—sewing—can’t be done while I’m in chemo because I risk injury in using sharp scissors and needles and pins. Any break in skin with a cut, poke, or bruise can create a potentially serious infection because of lowered blood cells and platelets that come with chemo treatments.
I’m not a television watcher, never have been. Well-intentioned people around me say it’s now a good time to take up an interest in watching t.v. There’s a multitude of talk shows, soap operas, and reality shows. Not for me. My t.v. limit is a couple of hours max a day, and some of that is news.
Others say it’s the time to read all of the books you have always wanted to read and enjoy them. There are many books waiting to be read, but after a couple of hours of reading a day I no longer have much energy left to concentrate.
Still others say, “take up crossword puzzles, jigsaw puzzles or Sudoku.” Nope, not for me.
I’ve never been musical or play and instrument, so that option isn’t available to me. There is only so much daily surfing of the internet I can handle, maybe an hour (although I do spend a more time on the computer if friends and family send emails). Games generally need to be played with others who are at work while I am at home.
But the trained writer in me who has plied this trade in some form or other for over 30 years, feels pulled to pen a blog. My tech savvy kids suggested it knowing that their mother would need a therapeutic form of distraction. And, as a cancer survivor friend of mine has said, it’s good therapy for me. He’s right. It is a diversion and a time-occupier, which gives me a couple of hours per session to write this e-diary.
Admittedly, it’s neat to see who the blog’s readers and followers are and where they are coming from. There are readers literally from around the world from destinations in Canada, the U.S., Europe, and Asia. I never thought that this diary would reach to so many places, and would interest so many readers. It was set up as a tool to keep in touch with family and friends who expressed an interest in wanting to keep up to date with my cancer journey.
These same family and friend followers are also the ones who keep me grounded in not becoming overwhelmed by the living with cancer experience. I trust that as they read this, they may have ideas for me to occupy my time. I gratefully welcome their suggestions.
So I mosey on in this cancer journey searching to fill my time productively. I continue to fight the mental beast of coping with cancer with Strength, Courage, and Determination.
It’s Saturday, and I’m closing in on ending my first week of chemotherapy. I’m feeling much better since writing the last blog.
It feels like I was knocked down, but not knocked out, with my first flush of chemo. My energy’s rising. I feel like I could handle a 30-minute walk if I could count on the weather co-operating by briefly holding off the rain.
The light-headedness is gone. My body’s feeling warmer as my chemo-shocked central nervous system is working better to regulate its temperature. I’m only cold to the core first thing in the morning for a couple of hours until breakfast food converts to energy to warm me. Herbal teas help, but I do miss my morning java.
Somehow greeting the morning without a coffee is a missing piece to starting the day. But I know I can’t have coffee (I only drank one cup per day), black tea, colas and any other caffeinated beverages as they deplete fluids in my body that I’m trying to preserve to flush out the chemo.
My chemo nurse said the first three days are the worst in treatment. I concur.
My treatment was on Monday. I felt fairly normal for the first 36 hours. By Wednesday and Thursday I was sick and lethargic. I felt more out of sorts than sick. It was similar to but different than the flu, and not what I had expected.
Today, the treatment symptoms are becoming part of my new normal in living with cancer. I still have a dry mouth and my gums are getting sensitive with the required five times daily tooth brushing. The smell of food cooking still churns my stomach, so I’m limiting my exposure to kitchens and barbecue odors. Cold foods work best.
Chemo is also doing an interesting thing with my digestive tract. If you’ve ever been on a high dosage anti-inflammatory medicine and your stomach hurts and is upset, its similar to what it feels like with chemo. Except that this will go on for weeks versus a few days to treat an injury.
For the digestive upset, my medical oncology nurse recommended a minimum of two daily portions of yogurt to line the stomach against chemo irritation. It seems to work. I know when I need to have a yogurt snack, my stomach reminds me.
I now have a sense of taste and want to eat. But in these past two days, chemo again has changed how food tastes. Sweeter foods now taste more sweet (almost nauseating), acidy foods taste more acidic, and sour foods taste more sour. Bland foods seem to work best but have their limitations; coupled with my gluten intolerance, that takes me away from many comfort foods I’d like to have.
Chemo is teaching me all about new adventures in how to cook bland--blach! It’s similar to how I introduced bland foods to my kids when they were babies as they graduated from baby food to table food.
If this week’s reaction is a pattern in how my body accepts chemo treatments, and it should be according to my chemo nurse, then mentally and physically I know that the first three days are the worst. I can live with that, particularly now that I have gone through chemo this week.
Next week, with my lowest immunity in a chemo cycle arising, things may be different again in how I will feel. For now, yesterday and today are feel good days and I will take them as bonus gifts in this cancer journey.
The only other new, but not unexpected, symptom is the gradual loss of my hair. I can see small alleys on my scalp where the hair is starting to fall out. By the end of next week my chemo nurses tell me that the cocktail I’m on will have stripped me of all of my hair.
A bevy of caps and hats wait to be used to cover my head, keep it warm, and prevent heat loss and sunburn. My wig sits on its stand waiting for its debut, along with false eyebrows and eyelashes. Add these to my breast prosthesis and prosthetic bra, and I’m starting to feel like I’m cancer’s Bionic Woman of television folklore (circa 1976-78).
I continue on this cancer treatment journey as both the patient and the observer. I keep walking on this trail by moving forward with Strength, Courage, and Determination.
(Writer’s note: The contents of this blog may be difficult to read).
A body out of control. That’s what chemotherapy feels like to me on this the fourth day of my first cycle of treatment.
I entered into chemo mentally and physically ready to accept the poisonous chemotherapy drugs that will hopefully rid me of my cancer. I was happy to finally get the treatments started, having waited for four months.
As a cancer patient, you’re told that chemotherapy has cumulative side effects. I was surprised how quickly the side effects came on and how they can change in less than a day.
I thought I was prepared. I wasn’t, despite the many briefing sessions and an array of reading I had done ahead of time. Part of the preparation included having many people around me who care, help, and stay in touch by phone or email. They are blessings in my life and are my link to the outside world.
But ultimately, this cancer walk is a solitary sojourn. I travel on this treatment journey very much alone. Only those who have walked this cancer trail before me can fully understand what it feels like.
It’s also a lonely walk. For my own protection, with chemo treatments I will become immunity-compromised (the second week of treatment makes me most vulnerable), so I can get sick relatively easily. I have to stay away from crowds, public places, and pets.
I feel like a prisoner in my own home, as it is the safest and cleanest place for me to spend these next 18 weeks while under treatment. The only public places I envision spending time in these next few months will be associated with my daughter’s wedding, if I am well enough to attend.
The first and second days of chemo were fine. I got through the first 48 hours relatively nausea free. The potent nausea drugs worked (it took us three drug stores to finally get them) and I managed to handle food and its preparation. My energy levels were pretty good.
Then came Day three. It hit hard. Chemo’s side effects surfaced.
I’m not a cryer, but I burst into tears three times during the day. They came from nowhere, without provocation. Was it hormone adjustments to chemo or just one of its many complications?
My mouth started to get dry overnight. It felt like a stampede of turkeys trotted through it. This occurs even though I have to drink a minimum of two litres of water a day to flush my body of chemo to prevent it from accumulating near my vital organs where it can damage them if left sitting there too long.
My taste buds have been deadened. I have no appetite and the smell of food makes my stomach spin. It aches with hunger, but I can’t eat. I have to force food into my body because it needs nutrition to offset the chemotherapy and rebuild healthy cells that are getting killed with the treatment. I get dry heaves just brushing my teeth.
As I write this blog, I just finished steeping a pot of fresh ginger and honey tea so that it can ease the butterflies in my stomach to try and eat something this morning. It tastes awful, but I’m hoping it will work. I’m not sure if I’ll be able to finish it.
I am cold all of the time while the weather outside is in the mid 20’s and sunny. My skin is getting drier, flakier, and is starting to itch as the moisture is sucked out of it with chemo. Dark circles are starting under my eyes due to a lack of restful sleep. My scalp hurts. I’m told this is how it starts to feel once chemo churns through my body in advance of shedding hair.
I’m lightheaded. Then there is the tiredness. I drift off into catnaps just sitting in a living room chair. This is not common behavior for me as I have never been a napper.
But it could be worse.
As I was getting infused with chemo, my nurse said one of her patients is a young man with little children who works as a construction worker. He comes in for his treatment, then returns to work because he has no sick leave benefits and has to provide for his family while he’s sick. She told me I was fortunate to be off work while in treatment, and to be glad that I don’t live in the U.S. to get the medical coverage I need for cancer.
I am lucky. My employer has provided me with sick leave benefits, enabling me to stay home and recover from treatments. I am also grateful for our universal health care system that is paying for all of the costs of my cancer treatments. Estimates say the various stages of treatment could climb to many tens of thousands of dollars when they’re all done.
The chemotherapy is liquid gold for a second chance at life. It’s one that I’m not sure I could afford if I had to pay for it on my own. As a friend said a few days ago: “Chemo is your friend.” I honor that friendship dearly.
I live with cancer, one hour at a time, one day at a time. I move forward in this cancer journey taking one step at a time and do so with Strength, Courage, and Determination.
The house is quiet on this early Sunday morning as I write this last blog before my first chemotherapy appointment tomorrow. The chemotherapy infusions that begin tomorrow morning will provide me with a second chance to live.
I don’t take this second gift of life lightly.
For now, I am cancer-free. However, the reality of living with cancer has finally set in with the onset of chemo as phase two of ridding my body of cancer.
The chemotherapy, radiation, and hormonal therapy to follow are insurance markers to prevent cancer recurrence. These treatments are all temporary phases of my life that I will have to go through to get better, and hopefully stay cancer-free. Twelve to 18 months from now, if all goes well, my body should return to the way what it was before my diagnosis.
As positive as I have been, and as calm as I’ve tried to be, knowing that chemo starts tomorrow has elevated my anxiety to the highest level I have experienced on this cancer journey. The mastectomy and cellulitis infection that followed surgery were easy compared to what is to come these next few months.
Living with a cancer diagnosis reminds me once again that life is precious. Despite one’s best efforts to minimize the risk of illness in proper diet, healthy weight, and exercise, one has little control over contracting cancer. Being healthy and staying well are gifts I took for granted prior to getting sick.
In this cancer journey, I have wanted to stay calm in the time leading up to chemo, but I can’t—especially in these last few final hours. More now than ever, I have to stay busy to keep my mind off cancer thoughts. I’m restless and not sleeping well.
I want to get on with the chemo treatments, but I dread them at the same time. Chemo hasn’t begun, and already I want it to be over with.
This is the first time in the cancer journey that I feel fear of the future and what is to come. I have to relinquish control, which is a life-changing behavior for me. I don’t deal well with the unknown, even though I have done all I can to prepare for cancer treatment mentally, physically, emotionally, and spiritually.
It’s hard to articulate what I’m going through in living with cancer in all aspects of my being. My friends who are cancer survivors can relate to the experience, and help to ground me when I’m feeling alone in this journey. I’m grateful to all of them for their understanding and empathy in being present to me through this cancer experience in ways that no others can.
They have each have walked into cancer’s dark tunnel of the unknown and made it through to the other side where light once again appeared. They are well, and their survivors’ outlook anchors and inspires me daily. It is from them that I have learned to live with cancer in gaining strength, courage, and determination to fight this life-threatening disease.
In spending time this past week with a dear friend over lunch, she framed the chemo experience for me in a way I hadn’t thought of. She’s journeyed with another friend of hers whose sister is currently in treatment for breast cancer. She reminded me “chemo is your friend.” It will be my mantra on days when I don’t feel well.
These past two weeks have felt like I’ve been at work again as each day has been occupied with a multitude of commitments. I have numerous pre-chemo medical appointments, and meetings for final arrangements for our daughter’s wedding. By design, I have spent time with friends over lunches and coffees before I become housebound to minimize the risk of infection with lowered blood counts with chemotherapy.
As a family outing, we managed to fit in the one and only baseball game I could see this summer. It was a fun distraction on a beautiful warm summer’s night. The home team lost, but the fresh lemonade and popcorn helped to round out the game night fun.
It has been an emotionally trying time for me these past few weeks. I have juggled medical appointments that have made me feel sad and anxious, while finalizing wedding plans that have made me feel happy. I have bounced from one extreme to the other between the contrasting appointments. I don’t feel well-prepared for either situation. I wrestle with coping with cancer, while being frustrated in not being well enough to be fully present to celebrate a big day in our daughter’s life three weeks from today.
Then there are the current and soon-to-come physical reminders that the cancer diagnosis is very real. I had day surgery to implant a port and central vein line in my chest and jugular vein. Touching the device is a creepy sensation; it’s physically and psychologically uncomfortable housing this implant inside my body and makes it difficult to sleep.
The port and IV line is a subtle physical reminder of cancer each time I look in a mirror and see them project through my skin. The port and IV “life-saving line” is the hub through which the chemo cocktail drugs will flow throughout my body. They will also serve as the location from which lab technicians will draw blood regularly to monitor my blood cell counts for chemotherapy to continue.
Other physical prep has included a wig fitting and two wig styling appointments. My hair had to be shaved down to my scalp to properly fit the wig. I now feel like “GI Jane” of the army. Going through the experience was eased knowing that Jen, my hairstylist of 15 years, was alongside me in making sure the end result was complimentary to my skin color and facial features.
Although it’s been fun to play with wigs and taking on a new hair persona, buying a wig and the reality of knowing why I need one saddens me. I can envision what I’ll look like in two weeks when I’m bald, except for the hollowed-out eyes and pallor that will come with chemo as it cumulatively collects in my body.
The breast prosthetic appointment was life changing, but was handled with much care and sensitivity by my fitters. I came home with a “boob in a box” and special bras to wear with it. When I am well and strong enough, I will return to the store for a swim prosthetic so that I can resume my aquasize classes as part of my fitness to fight cancer. (As a 20-year aquafit participant, my goal is to one day support and encourage other breast cancer survivors in maintaining their fitness by teaching them in specialized weekly aquasize classes).
In addition to these more noticeable physical changes, I had to buy artificial eyebrows and eyelashes for wedding photos, and had to hunt down organic body products to minimize dry skin and chemical contacts with chemo, and prevent enamel erosion of my teeth.
With both the wig and breast prosthetics, I now have to learn and practice new regimes in skin care and handling of my “replacement parts” to prevent deterioration from wear. There are also new routines to develop in oral hygiene to prevent chemotherapy sores in the mouth and throat, and new practices for scalp and skin care with chemo complications.
As I juggled the needs to attend to physical body changes, I also had complete disability claims paperwork to be away from work on sick leave. There is a waiting period of 120 days for activation. My oncology social worker helped me to fill out the forms, while my medical oncologist filled out the doctor’s reports and wrote an updated medical leave of absence letter for my employer and disability insurance insurer so that my benefits can be commence in November.
Today, I will spend my hours staying productively busy. My family will help with housework in scouring the house up and down to clean it for chemo. We will put things away that we temporarily don’t need, and make space to replace them with things I need to have nearby as I go through chemo.
The puttering and cleaning will be useful and therapeutic in helping me to relax in the countdown to chemo. By the end of the day, I should be exhausted so that I can plop down to sleep without effort and wake up to greet the day with chemo starting at 10:30 tomorrow morning.
The first few days of chemo are expected to take a physical toll as my body adjusts to the treatment. In my absence, my daughter will be a guest blogger to let everyone know how I’m managing with the chemo. When I can, I will return to write more blogs to share my cancer travels as you continue to walk with me in my cancer journey.
I'm on the road to recovery and enter the second phase of my cancer treatment with Strength, Courage, and Determination.
Before my life-changing cancer diagnosis, I thought that working full time in a demanding job, raising a family, being a spouse, running a household, eldercare, and volunteering in the community created a stressful life.
When I was diagnosed, intuitively I knew that living with a serious health condition would be stressful. I thought it wouldn’t be as stressful as trying to keep up with a career, family, household, eldercare, and volunteering. I was wrong.
Living with cancer and coping with the stress that comes with it is very real. There are days when it’s overwhelming.
Learning to live with a cancer diagnosis is a life-altering experience. It is just as stressful, if not more stressful than working full time in a demanding position and juggling the other demands of life.
I’ve learned, while being on sick leave to treat my cancer, that I have simply traded one kind of stress in working full time for another kind of stress in focusing full time on getting better and ridding my body of cancer.
Although I don’t have to entertain an array of meetings at work, the meetings have been replaced with an array of medical appointments. The difference is that with work meetings I had control over what the meetings were about, how long they would be, and with whom I would be meeting. With medical appointments, I have no control over what they are about, how long they will be (many of them run late), and occasionally I know with whom I am meeting.
Some of the appointments are new to me (muga [heart scan], bone scan, CT scan, chemo central line inserted in my jugular vein) so there has been anxiety in what to expect and how I’ll feel after the procedures. Then there is an array of ongoing blood work associated with treatment requirements. I have been jabbed with more needles and IV lines in three months than I had been in my entire life prior to starting treatments.
What has now evolved is a daily agenda that is no longer a work related one; instead it’s a medical one. Keeping up with medical appointments, having a healthy diet to help prepare for treatments and minimizing cancer food triggers (e.g. sugar grows cancer), and trying to fit in a daily walk and stretches to regain strength and use of my arm have become a full time job.
There’s been the additional stress of planning a wedding shower, wedding, and helping a daughter move away from home. Daily household tasks I once took for granted now have to sit and wait until they can get done by me on a good day, or someone else in the family when I can’t do them.
As well, some people around you want you to be “normal” in your behavior and outlook as you once were before you got sick. They can’t cope with you being sick and stay away, so you feel somewhat forced to “keep up appearances” when you do see them. When they stay away, it’s stressful because you miss seeing them.
Then there are the unexpected expenses of treating cancer in the temporary changes required with clothing, expensive hospital parking for numerous lengthy appointments, meals on the go, as you aren’t always at home when your medical appointments are scheduled, organic/chemical-free body care products, and organic/pesticide-free produce. Eventually, when my sick leave and vacation time are used up, I will be required to go on long-term disability for the remaining parts of my treatment and will see my income reduced by 30% until I am able to return to work.
So, it seems that there is a lot of stress in my life.
In my mind, I think I am dealing well with this dramatic change in life, its associated activities, and the stress that comes with it.
My physiotherapist and massage therapist would likely dispute my claim. The physiotherapist who is treating me says that my neck and shoulders are among the tightest muscles she has ever seen. Physio and acupuncture are helping and the muscle tension and headaches are abating. The massage therapist says my neck and shoulder muscles are like concrete. I’m busted—my body doesn’t lie. These caregivers know better.
I’m trying to learn to relax and let go. It is the most difficult life lesson I have yet to learn. I’ve been off work for over three months now and I am getting better in learning to relax and let go, but I have yet to master it. Type A personalities (I’m a raging Type A) are not easily able to gear down and relax, it’s not in our makeup.
Perhaps this anxiety and restlessness exists because when you live with a cancer diagnosis, you never really let go of thinking about it as it lurks in the back of your mind. The change in your lifestyle from working to attending medical appointments and treatments is a constant reminder that you aren’t well, and that life will never be as it was before your diagnosis.
I am fortunate in that an array of people are surrounding me and checking in with me daily to allay my fears and support me on this cancer journey. Family members have become closer, and good friends have become great friends. All of them are gifts in my life that keep me grounded so that I can keep walking on the road to recovery. The next steps in this journey are leading me to my chemo treatments starting in one week.
I continue to travel on the road to wellness with Strength, Courage, and Determination.
Since my cancer diagnosis on March 11, I have been depositing “warm and fuzzies” in my “happy” bank account.
I’ve had four months to make these happy deposits as my chemo treatment starts four months and one day after I found out I had cancer.
When I was well and busy with life, I clipped along at a fast pace with a full time demanding career, running a marital household, and parenting. Cancer, by circumstance, is forcing me to slow down and savour the rich moments life has to offer that I was too busy to notice when I was well.
Cancer continues to be my life’s teacher.
I would have rather learned this lesson in other ways. In living with this disease you adapt, and develop a mindset of gratefulness and appreciation for the merry moments of life. These moments pass so quickly when you’re well and not focused on them. You tend to take a lot of things and people for granted.
For me, the happy deposits in my living with cancer bank account started early with learning as much as I could about this disease from my psychosocial oncology social worker, my oncology nurse educators, my cancer surgeon, my medical oncologist, and an array of reading materials issued at medical appointments and online from sites recommended by my caregivers. Easing the fear of dealing with this disease is lessened when I know more about it. There is still so much to learn.
The biggest happy deposits continually come from dozens and dozens of people in my life who call to say they care, send me emails, meet me for coffee, lunch or dinner, and come with me to medical appointments. They have sent me cards, flower arrangements, food baskets, self-care packages, and books to keep my mind busy and distracted. Prayers have been offered from folks known and unknown. All have been appreciated. With each kind gesture, I have savoured the sincerity that came along with it and shed silent tears of joy.
My life has been touched in so many ways with cancer. The kindness and care of others has carried me through many rough moments in accepting that my life will have its difficult moments with cancer treatment, and thereafter. Living with cancer is something survivors tell me you don’t ever forget; you just learn to “park it.”
There have been some lifetime investments in the happy bank account since I was diagnosed with cancer, and others will keep occurring over the summer. Our daughter convocated from university, and had a wedding shower. She and her husband to be are slowly moving into their first apartment, and are getting married. Our son and his partner became excited “house shoppers” and are now eagerly waiting to get the keys to their first home. They will move in the first week of August after the wedding.
Daily, I am placing deposits in the happy bank account by being aware of how my attitude shapes how I deal with this disease. I continue to notice how this attitude influences the attitude of others around me in this cancer journey. I choose to stay positive, not complain, and accept that I am my own health care advocate. I enter into treatment with an educated knowledge that I am in good medical caregiver hands. I know that I can ask caregivers questions when I’m not sure of what to expect. I will get through the rough moments and am not naive to think it will all be easy.
Other smaller daily deposits I am placing into the happy bank account include listening to my music collection that hasn’t been visited for awhile. I am reading and walking in the lovely Manitoba sunshine (we haven’t had a lot of it with all of this rain, but I catch it when I can). I got in my one and only golf game for this year this past Friday. I’m enjoying cups of tea with origins from around the world, visits with my elderly mother in her sunroom, container gardening in our front yard and wrap-around patio. I have joyfully celebrated some family birthdays, our daughter’s wedding dress fittings, playing with baby Jaxon. I am eagerly waiting to hold brand new baby Elijah (born to one of our daughter’s bridesmaids and groomsmen born two days ago). To ease my anxiety I am journaling, and share my thoughts as personal therapy in penning these blogs.
Like other people living with cancer, I am learning more and more each day to focus on the moment and not to think too far into the future. There are still some moments I want to make happen before my chemo starts in two weeks.
I am a Goldeyes baseball fan and have had season’s tickets for a few years. There is just something so satisfying about sitting in a lovely ballpark, nibbling on ballpark food, and watching a game on a lovely summer’s day. I want to get to a home game within the next two weeks, as I don’t know if my energy levels and low immunity concerns will allow me to take in a game when chemo starts.
If my post-port surgery recovery goes well, I might try to sneak in another golf game somewhere where mosquitoes won’t transport me to another planet. There are still some lunches and coffees I’d like to have with an array of friends before treatment starts.
And there is a yard revamp waiting to begin within the next two weeks following the receipt this weekend of the landscape architect’s plan for our yard. I am hopeful that the work for my healing garden can be done in time to beautify the yard for our daughter’s August long weekend wedding.
I also am gleefully waiting to be able to sit in the revamped back yard with a cup of tea. I look forward to enjoying the pure pleasure of reading outside on a peaceful summer’s day to take down my anxiety levels and rest while in treatment throughout the summer and fall.
As I enter into chemo and prepare for the rest and recovery that are required to rebound from treatments, I have several new relaxation CDs I have yet to listen to. Ten new gift books are waiting to be read, seven loaned ones are with them, and there are a few dozen more in a bookshelf I haven’t yet opened. For years I’ve said; “I’ll read when I have time.” Bookstores are one of my weaknesses, cancer gives me more time to read. I am looking forward to it.
For Mother’s Day, my family bought me a portable DVD player to take with me to chemo treatments so that I have a distraction while poison permeates my body. I am in pursuit of old and new comedies. With chemo I want to laugh—I need to laugh to feel the endorphins pulsate in my body from my toes to my head…
In sitting in one of the chemo treatment chairs a couple of weeks ago for my IV orientation, I was able to see what my world will look like for the next six months when I make my monthly treatment appointment. I was also told to bring in a buddy for each treatment, along with snacks and drinks.
The treatment area has overhead tv’s with the news or soap operas (not for me) playing. It looks like there will be room to play cards on the treatment chair’s small arm counter. I will need to dust off the crib board and find a few other small surface card games. Then I’ll have to remember how to play, and make sure that with some of my chemo treatments that my “buddy” is a card player.
It all sounds like a quirky kind of house party that will take place each time I have chemo under the watch of chemo nurses and my medical oncologist. I will put the expression “when life gives you lemons, make lemonade” into practice.
I will continue to place warm and fuzzies into my happy bank account. I will invest in fighting my battle against cancer with Strength, Courage, and Determination.
The act of willingly letting your medical oncologist, oncology pharmacist, and oncology nurses fill your body with poison (chemotherapy/chemo) to rid you of cancer is not simply permission to get treated to get better. It is an act of physical, mental and emotional preparation and experience.
I will start my first chemo treatment on July 12. It is a three-week treatment cycle. I should feel reasonably well by the third week to celebrate the joy of our daughter’s wedding on August 1, concurrent with sharing in the happiness of our son and daughter in-law also taking possession of their first home on the same day.
Two or three days after the wedding weekend, I will undergo my second cycle of chemo treatment.
The sessions will continue for six cycles, ending just before Christmas. Then I will have a month off and will follow up with several weeks of radiation, likely starting sometime in January. Hormonal pill therapy for up to five years ends the treatment cycle.
Before one consents to undergoing chemotherapy, there is a litany of side effects that you’re warned about by your medical oncologist and oncology nurses. Some of the side effects in the chemo cocktail occur with all of the various drugs, while some have their own side effects independent of the other chemo drugs.
The side effects are the price you pay for getting better. You have to get really sick first with poison permeating all of your body. Then you can get better.
Without chemo, my risk of cancer recurrence is 50%. With chemo, it’s 10%. I’ll take the chemo and its risks to get better and live longer.
One can expect to suffer a combination of some chemo side effects such as: nausea, vomiting, diarrhea, hair loss, loss of appetite, weight loss, weight gain from steroids, dry mouth, harm to your teeth, dry skin, skin rashes, susceptibility to sunburn, nasal congestion, headaches, a lowered platelets count causing easier bruising and bleeding, taste of metal in your mouth, fatigue, anemia, allergic reactions, fluid retention, nail changes or loss, aching joints and muscles, numbness, tingling or burning in fingers and toes, a change in the way you walk, and a compromised immune system due to a lowered white blood cell count.
The medical oncologist predicts that I will get through chemo easier than many other patients due to the strength and good condition of my body. Overall, I am in excellent health. I have never been on any prescription drugs for other medical problems, am not overweight, and have never smoked. I have retained a several times weekly regime of physical activity for many years, primarily aerobic. Because I am gluten and lactose intolerant, a healthy and well-balanced diet of non-processed foods has been a lifestyle for several years.
For the first three cycles of treatment, my chemo consists of three drugs that form the FEC (Flurouracil, Epirubicin, and Cyclophosphamide) cocktail. I will get the chemo injection once every three weeks along with anti-nausea medication. For the following three cycles, the chemotherapy changes for more effective treatment. This second chemo drug, Taxotere, is given in the same treatment timing as its earlier counterpart.
Physical prep for chemo includes day surgery on July 2 to get a port inserted. A port is a central line into a vein through which chemo is administered and blood is drawn for monitoring tests. I will have this port for the duration of my treatment, which is inserted below the skin below my collarbone on the side opposite to where I had my mastectomy. A different surgeon than to the one who removed my cancer will perform the insertion in a different hospital.
I also have a pre-treatment muga (heart function) radioactive scan on June 28, and a radioactive bone scan on July 8. In between these scans are pre-surgery blood tests and other treatment visits with my care team. I am still waiting for a CT scan of my chest, stomach, and liver.
I’m briskly walking for 45 minutes daily to improve the strength of my cardiovascular system for the day surgery anaesthetic, and to improve the chemo circulation with a stronger cardiovascular function. On days when I’m feeling well with chemo, my hope is to continue to keep walking for a few minutes each day to stay strong and healthy.
I was advised by my oncology nurse to see my dentist prior to treatment for x-rays, cleaning and a check-up. Ideally, one wants healthy my teeth and gums prior to chemo and any cavities need to be filled as chemo can affect tooth enamel, can create a dry mouth, and can cause mouth sores. My dentist told me to buy artificial saliva spray to keep my mouth hydrated and to lower the risk of infection, to brush my teeth before and after each meal, to floss daily, and to gargle several times a day with alcohol-free mouthwash to reduce bacteria.
The oncology nurse told me to buy toothpaste without whiteners. She also recommended using products with natural ingredients in sunscreen lotions, bug sprays, shampoo, soap, skin lotion, and deodorant, as antiperspirant cannot be used with chemo. As well, I am to use olive oil or baby oil to hydrate my scalp. The goal with these products is to use as few chemicals as possible on the body while in chemo treatment.
She also told me to use plastic utensils for dining to prevent the increased taste of metal in my mouth. Other cancer care materials suggest that food may need to be cooked in non-metal vessels (glass) also due to metal sensitivities with chemo.
I am to be very careful when using knives, as cuts can create problems in infection and healing due to low white blood cell and platelet counts. I also have to try and prevent any bruising. My house is to be as clean as possible to reduce the risk of contaminants that can cause infection.
While in treatment, I am to limit coffee to one cup per day. It’s been recommended to consume yogurt 2-3 times per day to line the stomach to minimize digestive side effects, eat multiple small meals and snacks daily vs. three larger meals, and increase fluid consumption so that the body flushes the chemo more readily. Foods used should be high in anti-oxidants and nutritional value. Sugar should be used sparingly as it grows cancer.
While in treatment, one could say that I may be adopting a “Diva” look--particularly on our daughter’s wedding day. My oncology nurse has confirmed that wearing gloves is a good idea to reduce the risk of infection during a time of low immunity. The gloves will help to reduce the transfer of germs from others’ multiple handshakes in the wedding receiving line. The color of gloves I needed was not available locally, but with the help on on-line shopping I found opera gloves I need to wear with my evening gown.
Jennifer, my hairstylist, is helping to further the “Diva in the making” by assisting me in shopping for and buying a wig, as I will lose all of my hair within two weeks of the first treatment before the wedding. (Not all things will bring out the “Diva” in me; I won’t be singing any arias!)
The wig we chose is not at all like my own healthy crop of hair. Its not natural grey color, nor is it short and spiky. I won’t give away all the details…needless to say we had fun in selecting the wig along with some head coverings and natural hair eyebrows. I found natural hair eyelashes elsewhere. A make-up artist will add the finishing touches for the wedding to ensure that I don’t look sick in the wedding photos.
The next few weeks will be ones that will cover the full range of emotions in the ups and downs of living with cancer and in celebrating the gifts of others in my life. I look forward to the celebrations of life in a daughter’s and son-in law’s wedding and a son’s and daughter-in law’s first home. I enter into chemo treatments knowing that I have given love to others and receive it back as they help me in fighting cancer with Strength, Courage, and Determination.