Category: Personal

January 9 to March 29 and beyond, 2025

(I’m reserving photos to the end of this post since there are needles and other potentially triggering images. There’ll be a space before you get to them. I’ll drop some ‘easy’ ones in the main body.)

I couldn’t write about chemotherapy, except in chats. Even in email I tended to answer tersely, not knowing what to say.

So what’s it like? What was it like for me?

 

Chemotherapy started on 9 January. 2025.

I was getting a drug called paclitaxel, Taxol. Along with the Taxol I’d have pre-meds each designed to minimise common  severe allergic (hypersensitivity) reactions – steroids, antihistamines (Benadryl), and H2 antagonists before the infusion.  Before each session, you’re weighed, vitals taken (temperature, oxygen levels, blood pressure – mine was always too high, They take blood before each chemo session to make sure you’re strong enough to go through it. At first this is from a vein in your arm, as usual, but chemo drugs are strong and can damage your veins so a port that bypasses this site is inserted surgically at some point in your journey. i waited quite a few weeks for mine. Another story.

Once the blood test results are in, about 45 minutes later, they’re relayed to the medical oncologist who approves the session and orders the drug to be brought to your station. This can make the appointment time quite long, the waiting. Mount Sinai’s chemo care clinic has about thirty chairs and a half dozen beds. It’s a busy clinic and starts to feel familiar all too soon. There are pretend skylights on the ceiling and the air is cold. I would settle in on my assigned and reclined chair, wearing fluffy slippers -my feet elevated, wearing comfy clothes, and tucked in with a warmed blanket and a couple of pillows. There’s actually a feeling of being pampered despite the circumstances. There’s a pantry room  nearby and a visiting cart offering simple sandwiches, jello, apple sauce, juices, cheese, crackers, and sometimes cookies – you’re encouraged to eat well to help you tolerate these sessions. But those sandwiches – ugh. The pantry is there due to a generous sponsorship. Thank you, sponsors, but please improve the sandwiches. There’s cheese (white bread with a slice of American (plastic) cheese, egg salad – more like chopped egg with a suggeston of mayonnaise, tuna salad – the fishiest yet blandest scrape of fish, yet the one I chose the most often because it had a taste.

Saline solution comes first and drips in slowly the entire time. The pre-meds come in small bags and go through quickly. You aren’t really aware of them. However, the Benadryl was a real problem for me. While some people found it relaxing, it would make me intensely drowsy and even unwell. I dreaded this one. All the liquids, including the ones you’re encouraged to drink, fill your bladder quickly and that meant I was walking to the toilet often. I learned after the first week to wear sweatpants that I could easily take down and up to avoid accidents. Mostly, I felt I was sleepwalking and clung to my IV pole for support. Zombified was the word I used – frequently.

A second drug that helps with HER-positive cancers, Herceptin, comes next. I didn’t notice it. The nurse warns you when your Taxol is coming. I didn’t feel any different. The whole process takes about two hours. I will get the Taxol every week for 12 weeks,  Herceptin every three weeks for about a year.

Apart from one episode I’ve blogged about, the worst thing for me was the IV insertion. I have tricky veins – small and deep. My arms were butchered. On my second week I had a bad red, sore and itchy reaction on my arm, and almost every week I had black bruises and swollen arms. The nurses and the doctor weren’t bothered. Their various reactions – skin reaction, allergy, Infection – I had steroid ointment and also antibiotics – my skin stayed more or less the same, No one blamed the actual IV insertions.

I wasn’t looking forward to the port but I was suffering without it. I asked if it could be bumped to an earlier date and was told that everyone wants it sooner. It felt unjust in a triage system.

There’s not much to say about the port going in. It’s a surgical procedure under sedation. a catheter goes into the vein above your collarbone and a round plastic ‘port’ is inserted lower in your chest. My surgeon was friendly and talked to me about what was happening. He left the room at some point muttering about ‘close to an artery’ (what?) and afterwards said my veins were tricky. Yep. The procedure took longer than expected but it was finally done. It took three or four weeks before it could be used. The healing was slow and my veins still didn’t want to cooperate. Now I had a sore port insertion site and bruised and swollen arms. On one particular day, when my port was said to be ‘clogged,’ my arm was used again. When my IV was finally taken out I showed the nurse how swollen my arm was. He shrugged it off. I asked for ice. The swelling didn’t go away and my arm got numb, red and tingly. It was like a thousand bee stings or the worst carpal tunnel syndrome you can imagine. Later we read it might be a ‘chemo burn’ where the chemo drug leaks straight into your arm. Despite many questions, no answers ever came. I’m writing this section in early December. My arm finally feels normal, but now and again if I use it too much, the heavy tingling starts again and I have to shake it out. The gift that keeps on giving, my cancer friends would say. I did keep bringing it up with my doctor, who first thought about ordering an ultrasound to see if I had a blood clot (great!) but then said it was an allergic reaction, take antihistamines. I beg to differ.

Side effects? It’s different for everyone. There are many types of chemotherapy drugs and they have various similar and different lists of common and rarer challenges. While in chemotherapy I saw some people retching, vomiting, being surrounded by medical staff when some unknown (to me) reaction happened. One man was wheeled speedily to the emergency department. Some lay weakly in the beds with eyes closed or wide open. Some sat in their chairs with laptops, tablets, talking on the phone, like they were getting a manicure and not having toxic drugs dripping into their veins. Overall, the ward is quiet. There are lots of nurses – perhaps a dozen,

I was spared nausea most of the time – I had drugs for this, just in case, and twice I took half a pill – but many days I was too dizzy to stand. On those days I would feel I was blacking out. I considered the fact that this was the end. It wasn’t. Diarrhoea was a constant. Still is. Fatigue, yes. My nose was bloody every day and my eyes felt so dry it was if someone had scoured them. Eye drops did nothing to help. I developed blepharitis and many weeks of a very swollen eyelid. Nothing I did made it feel or look better, including antibiotics. Many days were spent lying on the couch napping on and off while the TV showed inane shows and movies. My audiobooks and meditation audios were friends in those days and continue to be so.  Except for hospital visits, I saw no one. I spoke to no one. I chatted online a lot. I took a couple of weeks off work and then worked only a few hours. Life had changed and I didn’t know when or if it would ever come back.

My last day of Taxol came on 29 March. Hooray.

My last day of Herceptin came on 11 December. Hooray.

A note: Oh, I lost my hair. Not everyone does apparently. You can also get a ‘cold cap’ which looks like a hairdresser’s dryer hood attached to a machine. I see a few women with those but I had no real interest. I want to talk about my hair but I’ll do a separate post for that.

A real-life email to myself (sic): 29 February, 2025

There is so much I didn’t blog about so I’m going to try to catch up. Time has now passed and things are foggier.  I’m going to back up a bit before starting again. I waited 4 to 5 weeks to get my results. I felt confident it would be a similar story to the last time. That time no nodes were involved and radiation was the only thing I had to go through. At the surgeon’s appointment there was the inevitable long wait.  He showed up eventually telling me it had gone well, but that one node was positive and one piece of a margin showed some cancer cells. He felt radiation would help that and quickly mentioned that otherwise it might mean some chemo. I asked him if he had an opinion on that and he said he didn’t feel the chemo was warranted in this case. My heart sank knowing that one node was involved. This changed everything. Sadly, my visit lasted only 4 minutes, and seemed hardly worthwhile. The medical oncologist would call me within two weeks and it would be a decision between the two of us. So that was that.

I waited for that phone call for 2 weeks and it didn’t come so I called them and within a couple of hours I had an appointment.

My brother, John, who was visiting us in Toronto, came with me to the medical oncologist appointment.  I liked the medical oncologist. He was Irish and very different than the surgeon. This one’s name was Geoffrey Watson. I met with the social worker Victoria and a nurse called Miriam who enrolled me in a study where I would be given a blood test to determine my genetic markers. This would help the rest of my family to determine their risk factors. They will be thrilled. Not. Doctor Watson told me that I would be having chemo, the light kind, or I could decide on a heavier regime. I didn’t have to decide immediately but it would start in January. And, holy cow, more surgery for that pesky margin. I couldn’t believe it. He said, we don’t want this coming back do we and it’s your best chance.  I could stop the chemo at any time if I was unable to tolerate it- here my brain switched to they think I may not be able to. This comes from having had my tonsils out when I was 6 years old. The nurses kept visiting me after that surgery asking, do you want to be sick? My 6 year old brain heard this a few times before thinking, they think I will be sick, and I promptly was. Long story about getting my tonsils out, a story for another day. Bottom line, he considered me cured but let’s never let this happen again. It wasn’t till later I wondered how he could say cured in the same breath as cancer cells are still in the margin, that I had had a positive node, and oh yes one tumour was HER positive, not a good thing. And yet he said, your prognosis is excellent. So why did I feel so bad?

After seeing Dr Escallon, I’d felt reasonably relaxed about what lay ahead. This was familiar ground. I’d have the radiation and everything would be as it was. It seems that after I’d seen him things had changed. Were there further results that clinched this new regime? If so, why had they not been available at that meeting and why had I even seen him if everything wasn’t known yet? I don’t suppose I’ll ever know but I do know that the surgeon visit hadn’t prepared me for the visit with Dr Watson.

Right after that I went to see the Radiology oncologist,  Jennifer Crooke. She’s at Princess Margaret Hospital, which is next door. We didn’t wait very long to see her and I liked her right away. She was relaxed but efficient, sweeping in like she’d known me a long time. She explained that she’d need to see what St Barts had done to make sure she knew what she could do. She may not be able. She drew some pictures for me of the little lingering cancer cells, explained the different chemo approaches, and explained the HER effect. She said those little complications were unexpected but showed up later. Lucky me. I would probably have a smaller, shorter surgery for that margin, but had anyone discussed a mastectomy with me? Well, no! She said the radiation would make my breast even smaller and harder, but I could have a reduction on the right side to balance things out. I told her I was happier with the thought of fillling out the one on the left with something in my bra. At my age I wasn’t going on any nude calendar after all. Geez.

There were always three of us in those rooms. Both doctors, with their separate styles, were routinely (Dr Croke more personable and empathetic) telling me the facts. John was quiet but later seemed confident things were pretty good. I was the one who was stunned and a little scared. What did all this mean? Was I going to be OK? Why weren’t things going like they did in 2002? And was it really that simple then? Probably not. It was, however, very clear that I was on a very different path this time.

Index of all my Breast Cancer Journey Posts

Getting to know the surgeon: It was raining the day we went to Mount Sinai Hospital in Toronto. We went up to the 12th floor where the waiting room was busy, full of the usual Mount Sinai clients. Older women, well-dressed. My doctor is Jamie Escalon. He’s a large man with a very high hairline. He talked to me about my findings and what would happen next. He told me I would find things very different from 20 years before. The biggest changes were that this was Day Surgery, that it would take an hour to an hour and a half, and that I would have no surgical drains. He also said that anaesthetic had improved and the new variety was fast-acting, fast-acting, with little after-effect. He did one worrying thing- he referred to one area of my breast and frantically search through my notes when I mentioned there were two. I saw Krishna look concerned at this and I hope for no good reason. After my surgery I would come back for results and a treatment plan. Again, this was a familiar pattern and so in a way I hope it will follow the same successful path. Since then I’ve had some bad days, with my emotions all over the place, I’ve been tired, and worried, and sometimes terrified. People think cancer hurts, and it may very well do in later stages, but at the beginning Everything feels normal. There’s no pain, there’s no sensation, just the knowledge that something evil is inside you. It’s very strange.

I was very scared of surgery, just as I had been with my other two surgeries in 2002 and 2004. My main fears were not waking up from the anaesthetic and how I would feel when I woke up. Women’s College pre-op is a virtual session, and took place 2 days before the surgery. I spoke to four different people, all who were very informative and friendly. There was the surgical nurse who explained what would happen on the day, the pharmacist who explained what drugs I could have and how to take them, a physiotherapist who explained the exercises and limitations following surgery, and finally an anaesthesiologist who explained the actual surgery and listened to my fears. He told me he would not be the surgeon on the day but that all of his notes would be provided to that person. I can’t say I was completely reassured, but it was helpful to know that they knew my wishes and were happy to support me on the day. It felt like a lot. The number of forms with information and consent felt somewhat overwhelming and the days before the surgery it felt like everything was moving very quickly. I felt exhausted.

Lumpectomy: The day of the surgery inevitably rolled around. I had to be there at 8:30am and my surgery would be at 1:45. We took the subway with my bags- my socks, two bags- one for my clothes, one for my shoes, and my CPAP machine, which they’d asked me to bring. Apparently, they want that there in case they have trouble waking you up. Hmm.

Once on the 8th floor, I changed into Surgical clothing- a long hospital gown, a pyjama type bottom, and paper booties over my socks. I had a locker to store my belongings in. At this point Krishna was able to join me as I went down to get my pre-surgical procedures.

I was on a stretcher bed and was wheeled around, which always feels somewhat alien and official. The first procedure was an ultrasound where images helped the doctor insert wires into the areas that would be operated on. First, of course, some local anaesthetic was put into my breast. Toronto has developed a new technology called the Molly seed – a magnetic guide for the surgeon. In my case  the older style, wires, was better because two magnetic Molly seeds would be a problem so close to each other. I felt a little bit disappointed by that since I was curious about the seed. Once the wires were taped down they did a mammogram to make sure they were properly in place. Luckily, they use only light pressure and everything went smoothly.

From here I was taking to the second floor to nuclear medicine for my Sentinel note images. However, there was a bit of a mix-up and they weren’t ready for me, having to order my dye from another hospital so back to the 8th floor I went. On the 8th floor I went to an area with cubicles like you find in an emergency room. They told me it’s the same area that I would be in after the surgery, so I was quite pleased to see this early on. Everyone was friendly and reassuring and although I felt anxious I certainly was not panicking, something I had really worried about.

Back to nuclear medicine. I don’t remember this from last time, and in fact I don’t think that I went through it. At the first surgery the Sentinel node biopsy was still in trial mode. In order to have it, I needed to be around for at least 6 months for our follow-up by the study. So instead two or three layers of lymph nodes were routinely removed. This time it was going to be Sentinel. I was in a really large modern room with a machine that looked like a CT scanner, lying on a very narrow bed. The technician told me that dye would be injected into the two areas and it would travel to the lymph nodes. He said, because it goes under the skin, it would sting but that sensation would fade within minutes. I didn’t feel it as a stinging, but more like a clenching or heavy pinching, definitely unpleasant but as promised short-lived. The machine moved me along under what looks like a screen without any viewing area and he left the room, which I hadn’t expected and I lay on my back for the 15 or 20 minutes he told me about. I feel quite woozy during that time, and really wanted to ask for help. Instead I breathed waiting for it to be over. When he came back in and I mentioned it he put an extra pillow under my head. He then said he was going to trace the outline of my body for the scan. I still don’t know what that was about.

Now the serious part- surgery. Several people came to talk to me including two anaesthetists who I told my preferences to. They listened without hurrying me reassuring me about my fears. What I mentioned my fear of not waking up the anaesthetist said that rarely ever happens in fact never. He told me I would be getting oxygen in the operating room and that’s when they would give me the anaesthetic. I reiterated that I didn’t want to be told when I was getting it and he nodded. The next anesthetist talk to me about the nerve block, explaining that it would go into my back near my spine and go to the nerves in the armpit and part of the breast. Did I want this done, it  would reduce pain immediately after the surgery and would last from  24 to 48 hours. I said yes but I was nervous so the nurse offered me sedation. I’ve always been afraid of sedation, but said I’ll try it- seeing it as an opportunity to experience it this time around in a very protected environment. I also said I didn’t want to feel out of it so she gave me a half dose. I was hooked up to an oxygen monitor and blood pressure/ heart rate machine and noticed my blood pressure getting lower after that. That was reassuring, and I did not feel out of it but quite happy, she had given it to me saying, here is your mimosa. It’s nice to smile at such a time. They sent Krish away before the nerve block. When I got it it was again two injections with a great deal of pressure but nothing I couldn’t handle.

Finally it was time to take me to the operating room. My anxiety was rising but manageable. At this point, trusting the team was the only way forward. The team was around me, but I couldn’t see a lot. There was no music, something Krishna said he enjoyed during his surgeries, but it felt like a nice community in there, with everyone speaking softly and working together. They put my oxygen mask on, the anaesthetist repeated that he wouldn’t tell me when he was giving me the anaesthetic, but pretty soon, after a few breaths, I could sense something different. I suppose I could have felt anxious then and resisted, but chose instead to move towards it, to have it done. People talk about a blank, or “the next thing they knew” but to me it’s not really felt that way, but more like a brief and grey time, then suddenly alert. Maybe not too suddenly. I was conscious of being conscious. I felt relief and happy that I was not groggy or nauseated, but in the room with people moving around me back in the post surgical area. They asked me how I felt and I said I felt fine but noticed one area of my tongue was numb and tingling. I am was really happy to have gone through it. I think the surgeon showed up my side pretty quickly saying everything went well, see you later.

I sent a couple of messages and Krishna showed up to sit with me while I recovered. I don’t think I was there longer than an hour or so before they brought a wheelchair to go down to the lobby. So nice to be outside, we waited a few minutes before calling an Uber to go home.

Sibling chat:

— Sleepy, itchy, tongue is numb on the right. Having ginger ale, in a bit of pain
— OK. I’ll let people know you survived.
Later:
— Waiting for dinner. I’m hungry, which is a good sign seeing as they sent me home with a sick bag
–My tongue is still tingling
Cos it doesn’t pay to not worry about something

Email the next day:

— How are you feeling???? How was your night? Hoping you slept like a log.
— Ha more like a twig

Sibling chat:

In fact, the nerve block they gave me meant I had very little pain. I felt almost like a fraud. What surgery? The emotional side was harder. I lay on the couch with TV and my audiobook, being waited on with meals. My friend, Denise, sent cake – yum. But it was strangely silent. Some people chatted if I went first. No one left casseroles or flowers at my door. Bah.

Index of all my Breast Cancer Journey Posts

In 2002, in the midst of two- yes, two major life events  I got a breast cancer diagnosis. I was weeks aawy from leaving Canada and had started packing up my apartment. Robin was going to be moving into his first place on his own, having decided not to go with me, so we had to pack for him and plan that move. I had a terrible cold, I remember, and was feeling ill and very stressed. I had to sell stuff, store stuff, ship stuff, get stuff ready for moving, pack up my life here, help Robin start his own. Saying I was overwhelmed doesn’t come close to describing my state of mind.

The good news is that I got through my surgery, I made my moves, both of them, and after a rough Journey with radiation treatment in the UK, I was done. Ten years later I was signed off from my frequent mammograms and support programs. I felt somewhat bereft, having to leave behind some quite magnificent UK support. I was done with cancer.

The bad news is I’m back on the same Journey now. 22 years apparently isn’t long enough. I’ve always regretted not writing about what happened to me so here I am, trying to do it again.

For several months I’d been noticing  my left breast looking different, smaller. I mentioned it a few times to doctors and nurses, all who said I was older, my breasts were changing, and of course my affected breast would be smaller. Then I asked again. This time I said I wanted a mammogram,

I went in mostly expecting my fears to be unfounded. A few days later I got a call that something was seen in the image and they wanted me to come back for another mammogram and an ultrasound. My heart had sunk when I saw the number and they said it was the breast centre. Bloody flashbacks. This was eerily familiar, following the same pattern from before. They had a cancellation today, they said after I questioned a couple of later dates. Yes, I’ll be there, I said. Then the replacement doctor called to tell me I had calcifications and went on to say that things have really changed since the last time. If it’s cancer, people just live with it, she said. One step at a time, she said. I found myself with that similar dark and suffocating feeling but I still hoped that it would be nothing major.

In I went. I had the regular and the “special” mammogram that hurts more Sitting outside the door, I could hear the technician chatting with the person before me. Then she left the room for a while, spoke to someone in another room and came back to cheerily tell her everything was fine and she could go. My turn. The ultrasound that went on and on and I felt my optimism fading. It faded even more when the technician left to chat with someone in another room, coming back to say that they would like to do a biopsy, and what I like to do that now or make an appointment to do it again another time. I said now.

For a breast biopsy a small incision is made and the ultrasound guides the doctor to remove tissue samples. In my case, there were two areas not too far apart and the biopsy sounds like a loud snap, which makes me jump. The breast  is numbed so there’s no pain other than the one in your mind. And so I waited. They told me my result would be ready on Monday or Tuesday- it was Thursday then but I also knew my doctor made calls on Wednesdays so I’d be waiting a while. So that was that. Meanwhile I resisted Googling. I really didn’t want to. It was all a fluke anyway.

I have a friend who has also had breast cancer so I turned to her. The emails tell more of the story:

–I hesitated to email you. I think twenty years isn’t enough. Today I got breast biopsies. PTSD is real.
–Jesus, why would you hesitate? You keeping anything from me makes me nuts. If you don’t tell me everything, I will hunt you down like a dog.
–Why did I hesitate? I didn’t want to dredge it up for you or have you be Pollyanna either. If you Google don’t tell me anything. I just don’t want to know…yet.
–Can’t believe we’re still worrying about this shit. Let’s hope we’re just worry warts.
–“Best case scenario” – benign calcifications. In my last situation every best case fell so yeah PTSD. It’s so going the same way so far. I waver between terrified and matter of fact.  Who knows. Maybe I’m good for another twenty years.
— I could not take the loss of you.

Wednesday came the news from my doctor’s summer replacement that there was cancer detected from the biopsy. I would be hearing from an oncologist for another appointment within a week. In fact I heard the next day and the appointment was for the following Tuesday afternoon.

Index of all my Breast Cancer Journey Posts