As part of Breast Cancer Awareness Month, we have chosen to reprint the personal journey of one of our contributors from the diagnosis to the recovery from breast cancer. Helena Long will be familiar to our readers as a freelance writer for us, and until recently, the editorial lead for the Wilkie-Unity Press-Herald.
Whether it was an intuitive experience or God speaking to me, at a personal development event in late July of 2015, the thought that I needed physical healing and I had bad health to get rid of popped into my head. How odd, I thought – I feel fine. There’s nothing wrong with me but … what if there is …
With a physical already booked not long afterwards, I took that mammogram form and made the appointment promptly. While I still half expected to be told all was well – after all, neither I nor the doctor at my physical had found anything to be concerned about – I was not surprised to be asked to return to the mammogram room for an additional “photo shoot.” And then, after that to another room for ultrasound.
The radiologist met with me. There was a very, very small lump. There were three reasons for concern, he explained. One, the lump had an irregular edge which was not a good sign. Two, there were calcifications in the same breast. Three, my family history – my mother died of metastasized breast cancer in 1984, five days before her 60th birthday.
The next step was booking a needle biopsy at the Irene and Leslie Dubé Women’s Health Centre at City Hospital in Saskatoon. Meeting the doctor in charge of my care immediately prior to what ended up being a prolonged three biopsies, he also said there was reason for concern. Later I overheard him telling someone else that 90 per cent of lumps in the breast are benign. He did not say that to me.
Time for another wait as the tissue samples from the biopsies were analyzed. The return appointment to discuss results was 12 days later. John and I decided to tell no one, including our children, until we knew something for sure. With all the hints the tests would be positive for cancer, it was a difficult wait.
We went early to Saskatoon so we could go out for lunch before the appointment. I felt my life was probably about to change forever so I wanted the lunch to be something special. My first choice of restaurant was gone, the building torn down. The second not open. We went to a third which sounded interesting but which ended up having, to me, a disappointing “ordinary” menu.
I was unable to explain to John why I was sad. If I tried to say the words, “I just wanted to have a really nice lunch before my life changes,” I simply started crying.
You think you are strong and handling everything so well but little things can trip you up.
After the “disappointing” lunch, it was time to meet with the surgeon. Even though it was “just” a doctor’s appointment at the Breast Health Centre in City Hospital, I had to check in as a patient and get a wristband, which I found a bit unnerving.
“Are they going to do something today already? But I’m not ready, I need to make plans. But what if it is so serious, they have to act immediately?” were some of the thoughts that crossed my mind.
Even when you are expecting it, the words “you have cancer” are a blow. And when everyone has been focused on how very small the lump is and how early it’s been caught, to discover you have to have a full mastectomy is another blow.
In my case, a lumpectomy was not a viable option because the calcifications elsewhere in the breast had proved to be another form of cancer – not the spreading everywhere kind, but something that would continue to grow.
We asked the surgeon how long I would be in the hospital and when I heard the answer “one night,” I was relieved. “Well, that’s not going to be so bad,” I thought.
But I hadn’t taken into account how hospital stays have changed. We met with a nurse who went through what to expect in more detail and I realized I wouldn’t exactly be waltzing home after my one-night stay.
But, thinking perhaps I could do a little bit of editing or writing work from home after a week or two, I asked “How long do you think it would be before I could sit comfortably at a computer for a couple of hours?” In my innocence, I thought a couple of hours surely wouldn’t be too much if I was at home and could lay down for a rest afterwards.
The shocked and horrified look on the nurse’s face was answer enough before any words left her mouth. It seemed as if it would be four or five weeks before such a feat was possible. She gently added, “You need to take time to heal.”
Now it was time to start telling people. Did you know there’s a whole logistical sequence to that? Who needs to be told first? Second? Who will be hurt if they hear about it “through the grapevine?”
Of course, my children were first on the list. The problem was they are scattered across Saskatchewan. One Facebook private message to all of them at once? That hardly seemed right. Setting up a conference call? They would have to be told the day, time and number to call and it would all have seemed weird. So, we met with my daughter who lives in Warman that very afternoon. Then, two days later, I started on a one-day road trip. Nine hundred and ninety-one kilometres later, I was home with only the teenager left to tell.
I arrived home after midnight on a Friday. The next morning, I learned there had been a message on the phone from the doctor’s office. They were ready to set the surgery.
Instantly it felt as if a rock had dropped deep into my belly, a dead weight settling there. This is real, it’s not a drill. I have cancer. I am going to have significant surgery. I am going to lose a breast.
I still had my youngest child to tell. Grade 12s can be hard to pin down for a private conversation so a day went by.
That night I woke at 3:30 a.m. There was no way I was getting back to sleep as the thoughts of what I would say to all the people still left on the list and their possible reactions swirled around and around my brain. Guilt at creating stress for my daughter in her graduation year churned inside me. Yes, I knew it was not my fault but we humans are not always rational.
At 4:30 a.m., I gave up and went downstairs and started some cleaning. At 6 a.m., John came to find me, astounded to find me up at that hour on a Sunday morning. I told him I had woken at 3:30 and couldn’t get back to sleep due to too much thinking.
He asked, “Is it bothering you that much? You shouldn’t worry; it’s early and it’s going to be taken care of.”
“It’s the telling that’s bothering me,” I explained. “I think it’ll be better when I’ve told everyone.”
And so the telling proceeded – my daughter that afternoon, then the calls to my siblings that evening. For the first time since his death the year before, I was glad my dad was no longer with us, glad I didn’t have to call and tell him the hard news about my diagnosis.
The next morning I could call for the surgery date. I watched the clock and paced the floor as 8 a.m. approached. Dialing the number at 8:01, I heard the answering machine advise me the office opened at 8:30 a.m.
Again, I felt the churning in my gut. Another half hour of pacing before placing the call at 8:31. The date of my operation – so far away, three whole weeks to wait; so soon, only three short weeks away.
Three weeks had its pros and cons. Three weeks to think about a cancer growing in my body. Three weeks to anticipate, think, worry. And three weeks to help make the transition at work. Three weeks to prepare things at home for a period of convalescence and recovery. Three weeks to gather reading material for my downtime.
There were times fear ran away with my thoughts. I work at being a positive person and seeing the good in life, people and circumstances, but, sometimes …
“What if they cut me up and close me up again; and then, when I wake up, they tell me to go home and get my affairs in order?” Yes, that thought crossed my mind more than once during those three weeks. Totally illogical – with breast cancer surgery, I don’t think the doctors even see any other organs! Extremely unlikely – the primary cancer lump was so small it couldn’t even be felt during a breast exam.
But the word “cancer” has such a negative aura about it that sometimes fear trumps logic.
Then, only four days prior to the operation, I had a rare quiet morning at home and went for a walk in the woods of our shelterbelt. The snow was falling and there wasn’t a sound to be heard beyond the panting of my canine companions.
In the peace, silence and solitude, I found myself in the presence of God and uplifted.
After the cancer diagnosis was confirmed, I had immediately kicked my daily sugar/chocolate habit. It’s embarrassing to admit that I was up to two and sometimes even three chocolate bars a day, along with the occasional pop. Yet somehow I just stopped, and didn’t even find it very difficult.
So, in the woods, I thought about all the excess sugar I was no longer ingesting. I thought about the post-surgery instructions suggesting starting exercise by walking, gradually increasing the length of the walks. I thought about how wonderful it is walking in our woods and how little I had been doing it lately. And I actually started to look forward to my recovery time!
And for the first time, I really felt in my heart, as opposed to understanding in my head, that, yes, this cancer has been caught very early. Although it was causing a blip in my life, perhaps it was being sent as a wake-up call and now I had the chance to start doing some important things a little differently and make my life even better than it already was.
Of course, I was still not looking forward to the actual hospital procedures and their immediate aftermath but I was confident about the future and looking forward to some downtime, daily walks and the 10-plus books I had gathered for some fun reading time.
My walk in the woods, the chance to have some peace and quiet and listen to my soul, sent me to Saskatoon City Hospital with a positive mindset.
Surgery is booked
My surgery was booked for Nov. 24, 2015. As I had to be at the hospital at 8 a.m., we went to Saskatoon the day before. I had brought my prettiest bra to wear to the hospital, not knowing when or if I would ever be able to wear it again. I even took a selfie in the hotel room, while all of me was still intact.
Before they put me to sleep for the actual surgery, I had one more procedure to endure. A dye was injected into my breast – four shots around the outside of the nipple – not fun. “Like a bee sting,” they said. Who wants to be stung there?!
The dye moves through the lymph system to find the node(s) most likely to have cancer, being the node(s) most active in draining fluids from the breast. That way, during the surgery itself, the doctor would know which lymph node(s) to remove for dissection.
The surgery went well and, by the next morning, my dizziness from the after effects of the anesthetic had worn off. Dressing to go home was a slow process and I needed some help but I was dressed and ready before noon.
I had been told I wouldn’t likely experience much pain after the first day or two, and I didn’t. Although I was sent home the day after the operation, I only took a bit of pain medication the first evening at home and then once again a couple of weeks later, after an icy fall. I was uncomfortable but not in any real pain for the most part.
There was an open drain under my arm, draining blood and fluid from the wound. That was the most awkward and uncomfortable part of the post-surgery period. Even after it was removed and the small hole cleaned and dressed by our wonderful public health nurses, the under-the-arm area was the one that gave me the most trouble.
The first shower after the drain was removed was a treat! Washing up in a basin doesn’t match hot water running down the length of your body, from your head to your toes.
For a few days I avoided looking in the mirror. Once I summoned up the courage, the sheer size of the scar was a surprise. The red, initially angry looking wound running right across my chest from near the breast bone to under the armpit was larger and uglier than I had expected. As time passes and the colour fades, it’s become less obtrusive; and perhaps I am getting used to it too.
Three weeks after the operation, I still couldn’t fully raise my left hand above my head but I could see progress as I followed the physiotherapist’s exercise routine.
If that was the end of my cancer journey, then I could expect to be pretty well back to all my normal activities by early January. If the pathologist found cancer cells in the lymph nodes, it would be a different story. Again, the waiting game.
A month after the operation, I felt great. My energy was almost back to what it was pre-surgery. I had no pain and rarely any discomfort. People who saw me commented on how well I looked. There was definitely nothing wrong with my appetite.
The Christmas holidays were timed perfectly to be a nice interlude between healing from surgery and dealing with any subsequent cancer treatments. I believe gratitude is important and I was grateful.
Although inevitably there was the question in the back of my mind as to whether cancer would be found in the lymph nodes or not, each day I was stronger post-surgery. Each day my arm was stronger and could reach higher. I worked hard on “being in the moment” and just enjoying whatever was happening, whether it was the taste of turkey and gravy, the peace of God in the quiet candlelight, the sound of children laughing as they played together, the colours of a Saskatchewan sunrise or the warmth of John lying next to me in bed.
Despite how I felt, was I sick? Maybe, as it turned out. The sentinel lymph node taken when I had my mastectomy turned out to be cancer-positive. There could be cancer cells still circulating in my body, looking for another place to set up shop. It was, and is, a chilling thought.
And yet, maybe I was fine. Maybe the surgery caught all the cancer before it got any further.
Unfortunately, I’ve learned there is no way to tell for sure. Apparently there is no test or scan that can determine the presence or absence of microscopic cancer cells.
Less than halfway through January, 2016, and already there had been three medical-related trips to Saskatoon with more to come.
Sometimes though, the thoughts come whether you want them to or not. How sick am I really? Is this the calm before the storm? If I undergo chemo, how horrible will it be? If I eventually die of cancer, how much will it hurt?
Sometimes, I could shut those thoughts off by focusing “on the moment.” Sometimes, I had to distract myself by reading a new book, doing a household task, cleaning up papers on my desk, colouring or some other activity.
It was all a learning curve, really. Learning a whole bunch of new medical terms, learning to control my mind, learning to appreciate today.
And it was time for a decision. Chemo was recommended yet, according to the oncologist, even without further treatment, 75 per cent of women who have a mastectomy and removal of the sentinel lymph node(s) will not have the cancer come back. The other 25 per cent will. The chemo regime he recommended for me will cut the 25 per cent risk in half, approximately.
So, the doctors were asking me to go through all the stress, distress and side effects of chemo – some potentially long-term – for what ultimately might not even work in my case. Meanwhile, the treatment also carries a risk of heart damage. What a choice …
Even prior to meeting the oncologist and hearing his recommendation, I had done some research into alternate cancer cures. Some are rubbish, in my opinion. Unfortunately all of the ones that seemed to show promise lacked detailed, controlled research in actual cancer patients.
So, I wondered, do I take the risk and try some alternate treatments and hope for the best? Hope that either I am in the 75 per cent and won’t have cancer again anyway or that taking one or more of the touted natural cures will prevent any new cancers from starting?
Or do I take the risk and say yes to the chemo treatments? Hope that my heart is strong enough to withstand it all and the side effects will be temporary? And hope I ultimately fall into the percentage of women for whom chemotherapy is effective?
As I told friends and family, I really, really wished there was a test available that could tell whether or not there were still a few cancer cells floating around my body. Even assuming there were still cancer cells, the lack of a test meant that, after the chemo, there was no way to know if it was effective or not. The proof doesn’t come until many years down the road when I either have a cancer re-occurrence or eventually die of other causes.
Ultimately, one morning at about 3 a.m., I decide to proceed with chemo because the main tumour tested positive for HER2 proteins and there is a chemo treatment specifically targeted towards that type of cancer. So it was more than a shotgun in the dark approach, although that was what the first three treatments would be – going hard and fast. Then the next treatments would start incorporating the particular anti-HER2 drug. The HER2 protein also meant the cancer was more aggressive than average.
I also heard the doctor’s voice in my head, saying “You don’t want to regret not doing it down the road.”
Other factors influenced me too. I was reassured by the number of women who shared their personal cancer experiences with me. They gave me the gift of hope, both by their caring and encouraging words and by the fact that they are here, visibly well and healthy.
John and my children are supportive and loving, and I knew they would all always be there for me, regardless of what decision I made.
I was even happy the timing of the treatments was such that I would be finished with the worst of the chemo by the end of May, giving me a month to recuperate before the graduation of my youngest child.
Knowing it would be my last chance to hit the slopes, I spent my last day before the first chemo treatment skiing at Table Mountain.
Time for chemo
The next morning, I had surgery to install a port in my right arm. Local anesthetic was used as the doctors put in a catheter leading into a larger blood vessel in my chest. The catheter ended in a port just under the skin on my upper arm.
The port system meant the nurses wouldn’t have to find veins for IVs during chemo or any other treatment I might need in the near future. Blood samples could also be taken through it. Once the stitches are out and the arm fully healed, they told me I shouldn’t have any difficulty with normal activities. I have to admit I was very glad they wouldn’t be using up my hand and wrist veins for chemo – I’m told it hurts and they have to keep finding new ones to use.
The port insertion was scheduled for 10 a.m., Jan. 25, to be followed in the afternoon by my first chemo treatment at 1 p.m. I’d been told it would take about 45 minutes. Good, I had thought, that will give lots of time for lunch; it had been emphasized not to come for chemo with an empty stomach.
Medical procedures are always stressful, especially when it’s something new to a person. I had done a lot of reading, and received some advice, and knew I wanted to be well hydrated and have a light lunch in my tummy before the chemo at 1 p.m. The stress levels quickly rose when the doctor inserting the port was late.
When he arrived and the procedure was underway at about 10:45, I relaxed a little. Okay, I thought, should be done about 11:30, still time to have lunch and drink water. (I had not been allowed anything to eat or drink after 6 a.m. because of the surgery.) Ha! What nobody had thought to mention was that I had to spend an hour in recovery.
Stress levels went up again as I was wheeled to the recovery area. “It’ll be 12:30 before I’m out of here and I can’t be late over at the cancer clinic,” I thought. Fortunately, we learned I was allowed to eat, lightly, and drink water during recovery. The nurse brought me two cups of water and John went to find a snack for me.
After they let me go, with only 15-20 minutes to spare, I grabbed a yogurt from the cafeteria and hoped it would be enough.
Once at the cancer clinic, I was given some anti-nausea medicine to take orally.
I received three anti-cancer drugs during each of my first three chemo treatments. I thought they would be all mixed up and dripped into my veins at once but I was wrong. They started with another anti-nausea medication and then each drug was administered separately. It made sense once I thought about it – if I reacted badly in any way, they would instantly know which drug was the problem.
While it wasn’t fun to be hooked up to an IV for the better part of an afternoon, I can’t say it was a terrible experience. Afterwards I sat in the truck while John ran an errand or two, but I was able to go in the grocery store to help select something ready made for supper that evening.
As soon as the wheels were rolling on the highway, I was out like a baby in the back seat. John had a very quiet drive home.
Once home, I ate a light supper. I had a slight headache developing but hoped it would cure itself while I slept overnight. I slept well but woke up with the headache still there. By mid-morning, as the headache worsened, I took Tylenol. That was enough to dampen it, although I could still feel it potentially threatening when I went to bed that second evening. Happily, it was completely gone next morning.
I felt a little nauseous the third day but made sure I kept my fluid intake up and also kept something in my stomach at all times. I didn’t eat much of anything at any one time but snacked on things like cereal and milk, crackers, a banana, etc. Hurray, no vomiting!
That night however was not fun. I woke up at 1:30 a.m. and was restless. I just could not get back to sleep no matter what I tried. As a result the next day wasn’t much fun either and, even when I tried to nap, I only slept an hour and a half. That night again, sleep was just as elusive and napping no more successful than before.
Sleep improved from there, although I did have a couple of weird dreams, one that frightened me enough I was almost afraid to go back to sleep.
As for other side effects, I was pretty fortunate during the first go-round. The odd day of very mild nausea, another day with a headache so minor I didn’t medicate it, a little constipation, a hint of heartburn one evening I took a calcium tablet for – that was about the extent of it other than being less energetic and having less of an appetite than usual.
I hoped the cancer cells were proving themselves to be less resilient than I seemed to be!
I was careful to make sure to eat regularly, even if it was something small. By the weekend following the Monday chemo, I was eating regular meals but less than usual and I made sure I had a couple of nutritious snacks in between. I also constantly had a cup of tea, usually green or herbal, or a glass of water with me that I sipped throughout the day and evening.
I cut out wine and decreased the amount of meat I eat. I increased both the quantity and variety of fruits and vegetables.
The nurses recommended rinsing my mouth out regularly with a wash of either baking soda or salt in warm water. I made sure I did that after every meal or snack and before bed. Two weeks after the first treatment, only one small mouth sore.
Everyone – and I mean everyone: nurses, doctors, every friend I talk to, family members, advice in books and online – says to conserve your energy and use it wisely. I made sure I spent time in bed at least a couple of times each day, with my feet up. Sometimes I napped, sometimes I just closed my eyes for a while, sometimes I read. But I rested regularly.
My oncologist said regular physical activity can help without detracting from the treatment.
I was blessed we had a mild winter and I was able to get outside for a walk and fresh air almost daily. Some days I found I could walk farther and longer; other days, I recognized I needed to turn back to the house sooner.
Moving into the third week post-chemo, I had the stitches removed from the insertion of the port into my right arm.
Then the hair started to come out. On the advice of the oncology nurses, I had let the teenager cut it a week or two prior so there would not be so much of it to deal with when the time came. When I noticed I was starting to “shed,” John trimmed it down even further and then gave me a buzz cut.
Everyone hears about nausea and vomiting and everyone knows you lose your hair when you’re undergoing chemo for cancer. What you don’t hear so much about and what I actually struggled with the most, at least in the early stages, was the need to essentially become a hermit.
As I’m sure you know, chemo attacks healthy cells as well as cancer cells. One type of healthy cell it destroys is white blood cells, which are the ones the body uses to fight infection, whether it be a cold, flu or something more serious. With white blood cells compromised, chemo patients are told to avoid people, especially crowds.
I asked about wearing a mask. “They’re useless,” was the response. I was a bit taken aback but later thought that, even in the doctors’ office and the health care centre, the request is you take one if you are sick, to avoid spreading germs. There is no suggestion made to take one to avoid becoming sick.
My oncologist was quite strict about avoiding the possibility of infection. That meant, for me, no playoff hockey games, no church, no movies and very limited shopping.
We had three sweet granddaughters in Warman. We were making lots of trips to Saskatoon but with two girls in large elementary schools, I couldn’t stop by for a visit. My second youngest and her man in Swift Current had made the big move from a rental unit into a home of their own. But with their two boys in preschool and daycare, I couldn’t visit there either. The two older grandsons in Moose Jaw, both in elementary school, were also off limits. Even the youngest grandchild in Regina lived in a no-go zone, between her own days at the sitter and her mom being a middle school teacher.
And then there were my daughter’s last year of high school basketball games and drama productions …
After a week’s delay, due to fever and a bladder infection, chemo round two happened Feb. 22, 2016. This time was a little less scary since I knew the routine. New things, especially new things we don’t particularly want to do, always pull you out of your comfort zone.
I had to have blood work first and then there was about an hour’s wait while results were analyzed. After a light lunch for me and a bigger one for John, it was back to the cancer clinic for the actual chemo.
During the infusions, one of the pharmacists came to talk to me about how things had gone the first time around. I told her about not sleeping for a couple of nights the first week. The anti-nausea drug that’s dripped in via the IV makes you drowsy. But the one you start taking at the end of the second day home can make you “jittery” as my doctor described it.
The pharmacist suggested I take it a little earlier in the day, say around 4 p.m. with a snack, rather than waiting until supper time at 6 or 7 p.m. She also told me I could take melatonin half an hour before bed to see if that would help.
Following her advice helped a lot. Although I still woke up at about 4 a.m. for a couple of nights, with no hope of getting back to sleep; that was far superior to waking up at 1:30 a.m. which is what had happened the first time around.
Eating was about the same as during the first post-chemo week. I didn’t have much appetite but I forced myself to have several small nutritious meals or snacks throughout the day.
It’s hard to measure with certainty, but I would say one thing worse after round two were my energy levels. After building back up to walking two kilometres after round one, after round two I found I couldn’t manage even half a kilometre. It was disappointing to have to start over, building up strength and stamina from scratch each time.
Although in the week following the second chemo treatment, I had spent pretty well an entire day in bed, in a “blue funk,” feeling sorry for myself and totally unmotivated to do anything, thankfully I didn’t have too many of those days. People commented on my “positive attitude.”
It’s important to know positivity doesn’t always come naturally, not to me and not necessarily to anyone else. In fact, from what I have read, it’s human nature to focus on trouble and danger because, at one time, that’s how we survived. If you weren’t alert to the possibility of a predator waiting to pounce, you probably didn’t make it home to the cave.
We still have to be aware of danger but we don’t have to focus on it exclusively.
What did I do to –mostly – stay positive? I was extra careful about what I read and what I watched. I’ve never been a fan of horror films but I even cut back on action movies. Adventure, fine. Lots of violence, no, thank you. The only exception I made was when the new Game of Thrones season came out, because I feared it would be more stressful to worry about missing it than actually watching it!
I heard laughter is important to good health. Along with my favourite TV shoes – Heartland, Dragon’s Den, Survivor and Masterchef Canada – I made a point of watching comedies most evenings.
When choosing books, there were some I left on the shelf. I didn’t want to be disturbed by thoughts of cruelty or unending sorrow. I wanted to be uplifted, encouraged and amused.
Focusing on the positive also applied to my hair. Never having been very good with hair, I didn’t think I would do well looking after a wig. So mostly I wore a hat – either a toque or a ball cap, depending on the temperature. I was also seen without any head covering and a friend told me, “You’re brave to not do the wig thing.”
Not brave, just focusing on the positive. When I was able to spend a few minutes with my nine-year-old granddaughter, I whipped off my toque and asked her what she thought of my “new haircut.” Her big genuine smile, the nodding of her head and the words, “I like it,” are what I kept bringing back to mind if others stared.
I guess I got away lucky the first two chemo treatments … the third one was definitely worse. The doctors and nurses kept warning me side effects were cumulative but, as I struggled to return as close to normal as possible after the third treatment, the word that kept coming to my mind was exponential, not cumulative.
I still managed to avoid being too nauseous and I didn’t throw up, but for eight days everything I ate and drank tasted like paste. Even when I wasn’t eating or drinking, my mouth felt pasty.
It got to the point I was worried about becoming dehydrated because it was so difficult to force myself to drink anything. Using a straw helped, as did lemon in both cold and hot water. Tea – and I tried many different kinds – was useless.
I also felt disoriented for several days. I have read “chemo brain” is a real thing and I do believe my thinking and reaction time slowed. It took me a little longer to comprehend something new or to think through an answer to any questions I was asked.
As the disorientation and unpleasant feeling in my mouth stretched into the second week, I had some real fear about the three treatments I was still facing. Then, by the end of the second week, which also happened to be Easter weekend, I found I could taste the flavours of food once again. My energy and alertness were improving as well. Fear of the future subsided as I felt better and better.
I think it’s a bit like childbirth. You forget about the agony of labour when you hold that sweet baby in your arms and before too long you’re willing to go through it all again. So, as I faced my fourth chemo April 4, I focused on the many years in the future John and I would enjoy our animals and our acreage and reminded myself, even if I felt bad for a full two weeks after each of the remaining three treatments, that was only six short weeks of my life I was giving up.
Although normally, I am a big advocate of “being in the moment” – being present and enjoying the presence of loved ones and the tastes, smells, sounds, sights surrounding you – I was learning sometimes you need the promise of the future to get you through the present moment. That’s not to say there’s isn’t always something to be grateful for – living in Canada, central heating, sunshine, fresh produce available at our grocery stories all year-round. But still there were times “the moment” was not fun.
Getting around the pain
The honeymoon was over – my body did not handle the second set of chemo infusions nearly as well as it did the first set. Some people get muscle aches and pains with the new drug I was on. Unfortunately, I discovered on the third day I was one of them. Not only that, I was one of those who have severe pain, enough to need prescription-only painkiller to get through it. In my regular life, on the rare occasions I might have, for example, a headache, I generally try to sleep it off rather than take anything for it. So this pain was pretty bad.
For a couple of days, I watched the clock waiting for when the time would arrive for my next dose of painkiller. It hurt to walk, it hurt to rest, it hurt to sit. Thankfully, after about four days the pain eased up and eventually was completely gone. But I was glad I had the painkillers ready for the next go-round.
What was actually maybe even worse than those few days of intense pain was the unrelenting bitter taste in my mouth. Nothing tasted good. Eating anything was a chore and so I did not eat much, forcing myself to chew and swallow just one more spoon or forkful of food. Drinking was no better; again dehydration was a concern as it was such a hard job to get anything into my mouth and down my throat. And the bitterness wasn’t there only when I was trying to eat and drink something; no, it was a 24/7 condition.
While the pasty taste and feel before had at least diminished after a week or so, the bitterness took much longer to dissipate. Even a week and a half after the chemo, my mouth still felt horrible and I definitely lost some weight.
Eventually my sense of taste did recover a bit so I had a few days to put a bit of weight back on and to rehydrate myself before heading back to the Cancer Centre. Although not everything tasted quite as it should, some things were close and at least things didn’t taste so horrible it was a herculean effort to put food in my mouth, chew and swallow.
I went into the second round of this new chemo knowing I was going to have a few day of intense pain but also knowing it would subside and I would feel fine again. In the meantime the “good” drugs were ready and waiting on my bedside table.
I knew I was going to have trouble eating and drinking but I also knew it too would not last forever. I also now knew popsicles, for example, would go down easier than most other things and would help keep me somewhat hydrated.
So, when being in the moment was really not very pleasant at all, I reminded myself of the end goal – many more years with John, children, grandchildren and animals. I reminded myself I was on the home stretch, more than halfway through the treatments. I reminded myself God was always with me on this path, even when I had doubts.
Then, I was done! And so looking forward to my first three-week anniversary of chemo without having to return for another treatment! But … instead I suffered through five days of diarrhea.
I spent most of the week either in the bathroom or moaning in my bed. After five days, I spent a night in hospital having my fluid and potassium fluids replaced. After being released, it took a couple of days to get back to any semblance of strength and energy, even my “recovering” levels of strength and energy.
Nobody’s life or health is perfect, but once you have been diagnosed with cancer and especially if you are undergoing treatments with side effects, sometimes it’s hard to know what’s what. Is the occasional ache in my knee caused by the chemotherapy or is it because I’m getting older? Is the newly rough patch of skin on my body cancer or is something else?
And was the five days of diarrhea I endured due to the cancer drug I still had to take for the next 10 months? Or was it a virus or something I ate?
I was only just well enough to drive to Saskatoon by myself the following Tuesday, June 14, just in time for my first radiation appointment. Yes, it seems that, as a cancer patient, you just get done with one thing when it’s time to start something else.
I had to have 25 radiation treatments, focused on the left side of my chest and surrounding lymph nodes. Radiation is given daily, Monday to Friday, at the Saskatoon Cancer Centre.
Rather than driving back and forth to Saskatoon every day, I stayed in the Saskatoon Cancer Lodge, along with other cancer patients from places such as Meota, North Battleford, Beechy and Prince Albert. The private rooms were comfortable and a full-time cook prepared plentiful and tasty home-style meals for us all.
Although I had no complaints about the lodge, I was sad to be missing summertime on our acreage. Earlier in the spring I had completely missed the blooming of my forsythia. It was in bud one day and the next time I saw it – after I had spent a week in bed with muscle aches and pains from the chemo – all I could see were some faded yellow petals scattered on the ground.
Although I was dealing with residual side effects from the chemo – in particular, numbness and tingling in my fingers, making them rather clumsy – and had to work to regain muscle after many days of relative inactivity, I rejoiced in the fact I no longer had to be a hermit. Radiation doesn’t preclude socializing with others and I was enough days past chemo that I could attend group events – just in time to go to church on Father’s Day and a wedding. That was a cause for celebration!
Radiation: Lying on my back on the narrow, hard table, alone in the radiation room, I watched the machine revolve around me and counted the number of times it came on – six. Six different positions and “shots” of radiation. Times 25 radiation treatments equals a total of 150. Not only that but each time, before the medical techs turn on the beam, they take two X-rays to ensure I’m in exactly the right spot and the right position. So that’s 50 X-rays on top of the actual radiation.
The stats say to do it though. The chemo was supposed to cut my 25 per cent risk of recurring cancer in half. The radiation further reduces the remaining risk by one-third – not as significant but then again the radiation is not nearly as difficult to handle as the chemo was.
There is some folk wisdom out there, perhaps even a quote from someone, to the effect that you ultimately regret the things you don’t do much more than the things that you do do. If cancer does re-appear in my body, I don’t want to look back and wonder “what if” and wish I had taken advantage of the medicine available. So I travelled two hours to Saskatoon Mondays and home again Fridays and, once a day in between, lay on that cold, hard table for 15 minutes or so.
Counting the number of times in a session that the radiation beam was on, however, made me wonder about some other numbers.
Despite my five days of diarrhea, during most of the chemo – six cycles, three weeks apart – constipation was more of a problem. As recommended, when needed I took a specified over-the-counter stool softener. At the end of the 18 weeks, out of 40 pills in the bottle, only nine were left.
When the severe muscle pains kicked in and I had to resort to prescription painkillers, I spent 15 to 18 days in bed and took 16 doses of the drugs. Those days don’t, of course, include daily naps during most of the 18 weeks of chemo.
With a loss of appetite and the horrible taste in my mouth making eating and drinking an extremely onerous task, overall I lost 35 pounds.
While radiation is not as difficult to handle as chemo, it did not end up entirely problem-less.
The doctors and nurses warn patients that often the skin in the radiated area will get worse after treatment before it gets better. The most common comparison is to sunburn.
Applying moisturizing lotions multiple times a day, I had a little bit of itchy skin and a couple of tender spots but nothing too terrible. That is, until about five days after I got home from the last round of radiation treatments. Then, a patch of skin on my collar bone actually broke open and I had a patch of exposed flesh approximately three inches long and an inch and a half wide. It was excruciatingly painful.
A special cream used on burn victims was prescribed and thankfully, in only a few days, new skin was starting to grow in from around the edge of the exposed area. The cream also helped with the pain.
Although I was back home and my energy levels were improving, allowing me to “do things,” the open radiation burn meant I was stuck at home. I couldn’t drive because the seat belt would have been positioned and rubbing over the open area. I couldn’t wear a bra of any kind. To prevent any dyes from getting on the wound, I was also told to wear nothing but white.
I had been looking forward to, among other things, attending some ball games and shopping at the farmers market. When a ride to town materialized – so I wouldn’t have to drive – I was excited … until I realized I really did not want to be wandering around the crowds at the ball diamonds braless in a white T-shirt, especially with only one boob!
Some months later, lingering effects of chemotherapy and radiation remained but were manageable. The most annoying ones were the constant tingling and numbness in my fingertips, and running out of steam and needing to have a rest when I was in the midst of happily working on a project of some kind.
My hair started to grow back but my nails were suffering. Healthy nail was starting to grow in but the nail that grew in during and immediately after the last three chemo treatments was in rough shape – both on my fingers and my toes. Some looked as if they would last until the new growth took over but a few torn or fell off. I had to bandage several of my toes and fingers.
Today, three years later, I am down to an annual visit with the oncologist. I can have a “bad hair day” with the best of them. My nails are all back to normal, although very occasionally I will have a bit of tingling or numbness in my fingertips. My mind still sometimes seems confused but that could be old age, too. Physically I surprise myself occasionally with what I can do, with both my energy and strength both still seemly increasing. Psychologically I will always wonder what the significance of a new ache or pain means.
But I am thankful, if I had to have cancer, that I had it here, in this time and place. In the overall scheme of things, what I went through was a small price to pay compared to what the alternative would have been if I was living 100 years ago without access to modern medical care.