Chemotherapy, Breast Cancer, and Me – Part 5
"The goal is to live a full, productive life even with all that ambiguity. No matter what happens, whether the cancer never flares up again or whether you die, the important thing is that the days that you have had you will have lived."
Two Weeks to Decide and Prepare!
After meeting with the surgeon on October 10th, I'd had a week to prepare for surgery. Now, after meeting with the medical oncologist on Tuesday, Nov. 20th, I had two weeks to decide on and prepare for several months of chemotherapy.
The first thing I did after leaving the oncologist's office was to go to the hospital lab so they could get some blood for a bunch of blood tests. After that, I walked home. (Yes, living within a 10-minute walk of the hospital makes everything so much easier!)
I'd barely shut the front door when the receptionist from my oncologist's office called me with appointment times for more tests he wanted done before our next meeting.
I realized that if I went ahead with the chemotherapy, I'd have to plan the next two weeks carefully in order to take care of all the things I needed to do before everything changed.
I printed out a calendar for the next weeks and began making a to do list and filling in the slots for each day with scheduled appointments and priorities for days when I had some free time.
Tues., Nov. 20
I tend to believe prayer makes a big difference. (Follow my LoveChild memoir if you want to know why.) So that evening I sent a note to a writers' prayer team I created roughly 19 years ago, and have been part of ever since. I see it as one of my lifelines. This is an excerpt from my email to them.
The oncologist recommended chemotherapy because it goes to the whole body in case there are some miniscule cancer cells roaming around. The radiation focuses only on where the lump actually was to get any cells that might still be there. I see him again in two weeks—December 5—so I have until then to decide whether or not to do the chemo.
I can’t say I’m delighted—there are lots of side effects, like nausea, hair loss, fatigue, etc. Ick! But I’ll likely go ahead with it. He was booking it today for right after he sees me, so I can cancel it if I decide against it.
If anyone want to share their experiences—I’m all ears.
We don't normally encourage people to respond with advice or suggestions, but I knew that a number of members of this group had already faced cancer and chemotherapy, so I really did want to hear any suggestions they had.
I wasn't disappointed. Several people sent me private emails based on their own or a family member's experiences, and all of them encouraged me to go ahead with the chemotherapy.
After reading their comments and a few others from family members and friends, I felt better about the whole thing. Yes, I could get through this. And yes, it would presumably be worth it in the long run.
Wed., Nov. 21
When I'd seen the nurse practitioner the week before (about the rash on my face), we'd talked about the breast cancer and she'd urged me to get a flu shot. At the time, we were thinking about radiation, but her argument was that because I'd be hanging out at hospitals where there were sick people, I should do what I could to keep from getting sick. Now that I was looking at up to four months of chemotherapy as well as a month of radiation, I needed that flu shot even more.
I'd never had one, partly because I wasn't sure they were effective and partly because my mother had had several and they always made her sick. However, I decided to go ahead. Fortunately, I was able to get an appointment for the next day. I also persuaded Les to get the flu shot because I didn't want him getting sick and passing the germs onto me.
I was more or less prepared to feel sick for a day or two afterwards, but I had no side effects whatsoever. Les had a sore arm, but it was likely because he did his usual swimming workout the day after. He probably should have waited a day or two before doing all that butterfly, breast stroke, back stroke, and front crawl.
Chemotherapy Change of Plan
When I'd spoken with my oncologist the day before, he'd been planning on four chemotherapy treatments involving two different drugs and spaced three weeks apart. So a total of 12 weeks, three months.
But in the afternoon, I got a call from him. He'd been doing some more thinking about the triple negative aspect, and had come up with an alternative treatment. He'd also discussed it with a colleague, who agreed it might be a better option. It would involve three different drugs, two for four treatments and the third for four more treatments. They'd be spaced two weeks apart, so 16 weeks or four months total.
But before deciding which plan to use, he needed to have me do another test—an echocardiogram. And it was already booked it for Friday.
Thurs., Nov. 22
A Little of This, a Little of That...
I spent most of the day doing research on what happens when you have chemotherapy and how to prepare for it. I learned a lot about what side effects to expect, what to have on hand, and what to eat or not eat. More lists.
The rest of the time was spent making lists of things I HAD to finish up in the next two weeks.
Since September, I'd been blogging my memoir once a week. I really wanted to keep that up. But the current blogs involved doing a fair bit of research on family history, and involved looking at and formatting photos, reading obituaries and other historical notes, and visiting Ancestry.com. I hoped I could power through that part and get to the easier "memory" parts.
I also had other things to do: two newsletters I was supposed to be sending out monthly; five websites to keep updated; ongoing book marketing, especially with Christmas coming up, and so forth. I was so happy I'd already found someone to take care of some of my social media for November and December!
But then there was the new book I was supposed to be editing by March!!!!
Finally, we were in the midst of downsizing and a bedroom changeover. As in, we still had our old furniture in the bedroom as well as some other things in the middle of the living room. Plus we still needed to buy a few more things.
I try not to shop on weekends, and I already had a lot of appointments booked, so I decided the shopping needed to be done right away.
We needed a new comforter, a bed skirt, curtains, and a few other things for our bedroom.
I got a hanging shelf thing for the bedroom at Bed, Bath, and beyond. And some gluten-free crackers at Whole Foods.
After looking at various places for a comforter, I asked Les what colour he'd most like in the bedroom.
He said "blue." And he didn't want anything overly feminine, whatever that means. Frilly, maybe?
I finally found a comforter with blue in it but also an airy feeling at the Bay. And Les actually liked it. Plus it was half price. So were the blue sheets I found to go with it. And not one but two covers for my body pillow—one of them flannel! So soft and warm. (Les hates warm so no way we are getting flannel sheets!)
We also found a weird picture at Winners. Not sure it will go in the bedroom, but it reminded of some trees we saw in Newfoundland, and we both liked it, so...
Still needed a bed skirt and curtains. And a curtain rod. Unfortunately, no luck that day.
Fri., Nov. 23
New Note to Prayer Team
After doing some research and hearing from some people, I’ve decided to go ahead with the chemotherapy, which may end up being longer than the one he originally suggested. We’ll talk on Dec. 5 after all the other test results are in.
Also, the rash on my face seemed to have cleared up so I stopped the creams for it yesterday and this morning the area around my lips is red again! I do have a refill so I guess we’ll do another 7 days.
I also booked a physio appointment for today since my lower back is a smidge painful and I figured I’d better see her now than wait.
We’re still in the midst of trying to minimize and so forth our furniture, etc. and doing a bedroom changeover. Which I’d like to finish since I think I’ll be spending more time there than usual!
And we decided to continue with the new HAC book based on the belief that I’d only have radiation, not chemo, so we have to work with that. It won’t be as big a book, and I think editing will be easier than my trying to write, but it will be tricksy.
I’ve also committed to blogging my memoir once a week, and I really want to continue that.
Please pray that I can figure out what I HAVE to do (and how) and what I can postpone or forget about entirely.
My blog was due to go out on the following Tuesday morning, so I spent the morning and later part of the day working on it. The current one was about my mother's growing up years, and I had to get a few pictures ready, plus try to correlate some of the details I'd discovered from other sources with things Mom had told me. There are still a few gaps or puzzling things, the reasons for which I can only guess at.
The blog posts for the first two weeks in December were supposed to be about my father's ancestry, so a lot of research was still needed. Because I expected to be kind of out of it for a week or so after the chemo, I wanted to use every spare minute I had before December 6th on getting at least two more blog posts ready.
12:30 - Echocardiogram
If you haven't had one of these, they're used to check your heart for possible problems. I'd had one some years before when I had some pain around my heart and high blood pressure. Everything turned out okay.
This time, the oncologist wanted to make sure I had no heart problems before he gave me the new chemotherapy drugs he wanted to use.
Of course, the whole thing, from registering at the hospital 15 minutes early to getting dressed and leaving, took way longer than you'd expect.
Plus, for some reason, the woman who registered me decided I needed assistance because I asked where I should go. Instead of telling me which waiting room to go to, she called for a volunteer (a high school student) to walk me to the waiting room. Which meant I wasn't able to hit the bathroom I normally use and I had to make small talk as we walked. I advised her to get routine mammograms and not put them off.
Then I had to sit in the waiting room thinking that I needed to go to the bathroom, but not going because I was afraid that the moment I left, someone would call me. Sigh.
Fortunately, I didn't have to wait too long. And when I was called, I asked if I had time to make a quick trip to the bathroom. The very nice young lady laughed and said, "Of course!" There was one in the hallway, so all was well.
In the Echo Lab Room, I removed my top, put on a gown, and lay down on my left side.
The technician attached several electrodes. She then placed a transducer on my chest and moved it around, aiming an ultrasound beam to the heart. She did this for maybe fifteen minutes, recording the echoes of sound waves, which the computer converted to images on a monitor. I have no idea what it showed, but presumably all was well.
We were still looking for some things. I knew the mall would be crazy, but we went back to our local mall where I found a pair of SoftMoc winter boots that fit well, slipped on and off easily, and were on sale. Since Les would just drop me off and pick me up for chemotherapy, they'd be very useful. Bonus: when I went to pay for them, I discovered I had a refund on my account for $30. So my boots cost me $49 plus tax. Nice.
We also picked up some Lego for our oldest three grandsons on sale at Toys R Us.
Then it was back to Bed, Bath and Beyond, where we found a bedskirt. And on to Lowe's where we thought we'd found curtains, but later decided they didn't work. And then on to my physiotherapist who works in Pickering.
I hadn't seen the physiotherapist since early September, so I was overdue. My mid-back tends to get twisted from sitting at the computer. It wasn't too bad, but it was good I went to see her.
Then it was back home to research castor oil and work on my blogs.
Sat. Nov. 24
Odds and Ends
I worked on my blogs, updated my websites, did some things around the house, watered my plants, and basically kept busy all day.
Sun. Nov. 25
Kids Church Takeover
Because four of our grandsons (and their parents) were involved in a "Kids Takeover" at their church, we went to see them. Impressive. The next generation is more than capable. Yes, we have video and pictures. Let's just say they're following in their dad's and mother's footsteps.
Because we were a block away from a Bouclair store (our last hope for finding blackout curtains for our bedroom), we stopped in there after church and... Success! We found exactly what we wanted.
We put together the new headboard for the bed and did some other household things.
Mon., Nov. 26
I spent most of the day working on the blog about my mother and the one about my dad's father's family.
Plus I realized I needed to write another "cancer" blog update. Trust me, writing a blog post is way easier than updating people individually.
Tues., Nov. 27
I'd been thinking about getting this for a while, but especially now that they seem to have developed a fairly effective vaccine. When I had the flu shot, I asked the nurse what she thought and she recommended I get it. So I'd made an appointment for the vaccine, spacing it out a bit from the flu shot (which she also recommended).
I had it at 10:40 that morning.
Good news: There were no side effects!
Looking After Our Youngest Grandkids
A few weeks before, Les had agreed to look after our two youngest grandkids for a couple of days and one night.
After my research on chemotherapy, I was very conscious that avoiding germs was something I wanted to do. But most germs I get seem to come from very small people. Hmm.
Unfortunately, a while after the kids were dropped off, Les noticed that the younger one felt warm. It could just be a normal warm child, but it could also be a fever.
I ran upstairs.
We didn't want to make the parents come home for nothing, so we didn't say anything.
I hoped that whatever it was wasn't contagious, or wouldn't come near me, or would be minor if it did.
When not busy with other things, I kept working on my blog posts.
Wed., Nov. 28
After a few deadends, Les had found some people to take our bedroom furniture and a few other large items we no longer needed. So Les had to bring the little sick boy with him to our house so he'd be there when the people came with their truck.
Les settled him in our guest room for his nap, and I hid in my office and kept working on blogs, etc.
Thurs., Nov. 29
Les went with me to meet with the Radiology Oncologist at nine in the morning. The radiation unit is actually located in Newmarket, but my oncologist comes to Markham one or two days a month.
Again, she seemed very nice. She spent quite a bit of time outlining why I'd want radiation after the chemotherapy (to focus on the specific area where the cancer was), but she also talked about cancer prevention and so forth. Because it's important, I'm going to post something just on that at some point.
While I am scheduled for radiation after the chemo, I'm still not 100% certain I'm going to do it. Seems to me that if the chemo is effective all over my body, it ought to be effective in the original cancer area, too. Especially since there was no spread out from the small mass.
Son #3 helped Les move a couple of furniture items to the garage, ready for him to leave out on a nice day. People in our area often leave out useful things and others pick them up.
Because the bedroom walls have never been painted (think 18 1/2-year-old white builder's paint), we decided it made sense to paint the room before moving a mirror, installing a wall-mounted TV, etc. So we started looking at paint chips.
Fri., Nov. 30
CT Scan and Bone Scan
I'd been told not to eat anything after midnight Thursday, and to be at the hospital by 7:00 Friday morning.
Despite my efforts to avoid her, I ended up registering with the same lady who'd decided I needed someone to accompany me to the waiting room last time. This time I refused her offer of a guide and was able to get to the bathroom I prefer and then find the waiting area without difficulty. :)
The purpose of the two scans was to make sure there was no sign of cancer in my bones or in my organs.
Basically, I was there more than three hours, drank a bunch of stuff that tasted decent, had some dye injected into my arm, and lay in two machines in different areas of the nuclear medicine section while two different people—one female, one make, used machines to scan me.
"A computerized tomography (CT) scan combines a series of X-ray images taken from different angles around your body and uses computer processing to create cross-sectional images (slices) of the bones, blood vessels and soft tissues inside your body." Read more at https://www.mayoclinic.org/tests-procedures/ct-scan/about/pac-20393675
"A bone scan is a nuclear medicine imaging test that uses bone-seeking radioactive materials or tracers (radiopharmaceuticals) and a computer to create an image of the skeleton (bones). A bone scan looks at the bones to see if there are any abnormalities, such as a fracture, tumour or infection."
Read more at http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/tests-and-procedures/bone-scan/
I also had to go for yet another blood test before walking home.
In the afternoon, Les and I both went to the hospital for what was called a "Cancer Clinic." It was basically an information time with maybe 15 people, presumably cancer patients and spouses or friends. There was a videotaped lecture by a nurse, and afterwards the same nurse answered any questions we might have.
Most of the information was already in the booklets I'd been given when the cancer was first diagnosed, but it was good to go over it. I would have liked a bit more practical information, like what we should expect when we came for the chemotherapy, and what we should bring with us, but I was okay with what I'd found on the internet.
Sat., Dec. 1 and Sun., Dec. 2
Reading and Evaluating Stories
We'd already read some of the stories, but we knew we had to finish up, so we spent most of Saturday and part of Sunday finishing reading and evaluating the entries for our new Hot Apple Cider Book. Les and I read all of them them separately, and gave them scores.
- A - perfect for the book and requires little editing
- B - great fit thematically but requires editing
- C - could be a good fit with a fair bit of editing
- D - could be good but would require a lot of work
- E - not really a fit for our theme
Then we began part 2: comparing our evaluations and deciding on a final category. Unfortunately, we didn't get very far with that.
Mon., Dec. 3
I managed to finishing up my blog for the next day on my dad's father's family. I also did some work on the next planned blog about my dad's mother's family.
Tues., Dec. 4
I've been trying (and mostly failing) to get a couple of monthly newsletters out. I decided I had to get at least one of them out before Christmas, so I spent Tuesday working on that, and sent it out.
Wed., Dec. 5
Les Starts Coughing
Early Wednesday morning, Les started coughing. He then told me he hadn't been feeling well since Monday, and had been trying to fight it. He might have picked it up anywhere, or it might have come from our adorable youngest grandchild. Certianly wouldn't be the first time a grandchild had passed on germs!
All I could do was stay as far from Les as I could, and hope I hadn't already picked up the germs. So Les started sleeping in our guest room to keep his germs away.
Second Medical Oncologist Meeting
I went to the hospital for a blood test first because the oncologist always checks to make sure your white blood cell count is high enough before okaying chemotherapy. So Les dropped me off and picked me up.
An hour later, we went back for the appointment with the oncologist in his office, which is in a medical building next door to the hospital.
This time Les went with me. When I met with him two weeks before, the oncologist had thrown out a lot of numbers and other facts. Partly because I rarely remember numbers, and partly because at the time I was kind of in shock that he was even recommending chemo in the first place, I didn't remember them. I figured if Les came, the oncologist would go through the details again, and Les would likely remember. (You'd be amazed at how many numbers he can remember, even from many years ago.)
Plus, Les had some questions he wanted to ask.
The outcome of the meeting was that all my tests showed that there was no other cancer, my heart was strong, and I was in good health. The doctor said there was no reason I shouldn't live another 20 or more years.
So we agreed to go ahead with the eight x two-week cycle of chemotherapy, and the oncologist gave me a bunch prescriptions for drugs I'd need.
The Cancer Clinic staff had recommended using the pharmacy at the hospital because they have cancer drugs in stock, but I wasn't going to do that unless it was necessary. We'd been dealing with a small local pharmacy for 32+ years, so my first thought was to see if they could fill the five or six perscriptions I'd been given.
We drove there straight from the hospital, and although they didn't have several of the drugs I needed, they said they would get them before they closed that might, and they'd get the one I would need on Friday by the end of Thursday.
Then we went to pick up a few other things we needed, including a mattress pad for our Tempur-Pedic mattress (which isn't supposed to get wet), more paint chips, and a few groceries.
Getting Ready for Chemotherapy
I'd been feeling somewhat sick to my stomach all day. Like slightly nauseous. I think it was simply anticipation of what was to come the next day when they'd be pouring dangerous liquids into me.
I had to ignore that feeling of dread and get ready. I'd found a number of sites with suggestions as to what to wear and what to take to the chemotherapy session. I needed to pack.
I'd already ordered a bunch of library books to have on hand, but now I made sure I had something to read on my Kindle and charged it. Easier to take to the hospital than a book, and easier to hold.
I charged my iPad, which I really haven't use much. (It's Les's old one, so I don't feel too guilty. I just vastly prefer my desktop.)
I got out three travel mugs to fill with water, ginger tea, and ginger ale.
I packed lozenges for a dry mouth, hand lotion, a box of crackers, new headphones for my iPhone, a small blanket, a comfy warm top that wouldn't interfere with the IV, warm socks, note cards and a pen in case I needed to write something down, a couple of the booklets I'd been given, Vaseline for dry lips, and some Kleenex.
Thurs., Dec. 6
I was scheduled to be there at 9:30, so at 8:30 I took the three different pills (technically 1 plus 3 plus 2) that I'd been told to take. They were to help with nausea and inflammation. My druggist had mentioned that one of the drugs might make me feel a bit ADHD. Before the hour was up, I felt a little spacey.
At 9:30, Les dropped me off at the Cancer Clinic and went back home. He didn't want to bring his germs into the hospital.
After a short wait, I was taken to a small room with a comfortable recliner, a television, and places for me to hang my coot, etc.
I took off my boots and put on the comfy socks and comfy top, and unpacked my thermoses, blanket, crackers, Kindle, and iPhone and set. I put the blanket over my knees and arranged the other things on the side table to my left.
The nurse who had done the Cancer Clinic we'd attended came in and put an IV into my left hand, with saline solution in it. Apparently she had to leave for an appointment so another nurse would look after me.
At that point, I learned that the drugs weren't prepared until I was actually on site, so there would be a bit of a wait.
Another nurse came and admired my blanket. She also said they had flannel sheets and did I want a warm one? I did. So the warm flannel sheet went under my blanket. I wouldn't be cold.
After a short while, the nurse returned with a large tube of bright red liquid. She was wearing a paper gown and gloves. Apparently, she didn't want any of the liquid to spill on her. And yet, she was going to put it inside me!
This drug, DOXOrubicin, was injected through the IV, but the nurse had to sit and slowly inject it. It took maybe 20 minutes. Possibly longer.
When that was done, the nurse set up a yellow drug, Cyclophosphamide, to drip down from a plastic bag in the usual way.
At that point, she left me alone for about an hour or more, and I got out my Kindle to read.
I kept sipping from my three drinks (ginger tea, ginger ale, and water. And I ate some of the crackers. They tasted good, but to be honest I can't even think about them or look at the package without wanting to throw up. I tossed out the rest of the package the next day.
When the last of the second drug had gone through, the nurse came and disconnected everything. I got ready to go home and texted Les to come pick me up. (Have I mentioned how nice it is to live only a short distance from the hospital?)
Since this was all new, I'd planned to take it easy (read books) for the rest of Thursday and Friday. I had a little nausea, but not much. I'd checked on what to eat to prevent nausea, gas, and other bad things, and overall I was fine. Just a lot of tiredness.
Fri., Dec. 7
The First Needle
I had more pills to take in the morning.
Friday afternoon, Les dropped me off at the Cancer Clinic, where a nurse injected something into my stomach that was supposed to help my white blood cells recover quickly. I watched carefully, because from now on we'd be doing this at home. One day for seven days after each treatment. My stomach was going to become a pincushion!
Sat., Dec. 8
A Quiet Day
By the afternoon, I actually felt well enough to work on the next cancer blog.
Later in the afternoon, our #3 son, who is a veterinarian, came over and demonstrated for Les how to give me the needle. Honestly, he was better than the nurse. And his instructions were really good.
In the evening, we watched a movie Les had picked up at the library.
(Have I mentioned how much I love our library, which is right next to the hospital?)
Sun., Dec. 9
Another Quiet Day
I felt less well than the day before, so I decided I may have overdone it and had another really lazy day. Mostly reading.
Mon., Dec. 10 to Thursday, Dec. 27
I woke up Monday morning with a sore throat, cough, cold, and fever. Ach!!!!!!!!!!!!!!!! Despite my efforts to avoid germs it was pretty clear that Les had passed on his cold to me. I was miserable all that week. Finally went to Emerg on Saturday night when my fever, cough, and sore throat didn't seem to be going away.
The second week was somewhat better, but when I saw my oncologist on December 19, he pushed my second chemotherapy treatment back a week and gave me antibiotics.
Which worked out okay. I saw most of my family members but stayed far away from them at Christmas. Participated in a few things but mostly rested and read.
Had the second chemotherapy on Dec. 27th. It was okay. No surprises. But I was still tired and had a bit of a cough.
I now know that what Les and I had was what a nurse called a "month-long flu."
Yes, it was just short of a month (January 6th) before I had any energy at all. Like, ANY energy. To make a list. To write a short email. Or even to care that I didn't care. Sigh.
To Be Continued.
LoveChild: Life Lessons from an Ugly Duckling is the story of my struggle to adjust to the life I was given, and my eventual discovery that, not only had I become a swan but, contrary to my perceptions, I had always been one. Though I didn't realize it until many years later, my life was part of a much bigger plan that all made perfect sense.
I'll be blogging my story once a week.
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