Category: Here we go again

Thankfully, I’ve been sleeping well, which definitely helps how I feel. Day three was a busy day, as I wanted to to a Halifax run to return a few things and pick up a few things. It actually turned into a Dartmouth run once I realized that we could do Ikea, Home Depot, and Costco all in Dartmouth. We also got to use our new Macpass for the car (the toll card for the bridges in Halifax). I can report that it worked very well.

I knew I was pushing it, going to Halifax but it worked out OK. I don’t think I should plan such a big trip on the Friday post chemo next session. I am reminded of spoon theory – and its importance when I’m managing myself during this part of my chemo cycle. I have a limited number of spoons so I need to make sure I’m choosing wisely how to use them.

One thing that made the trip to Halifax possible, was that a neighbour came with me. It meant that if at any point I couldn’t drive, that I had a backup driver – which worked out brilliantly – it also meant we had a nice chance to visit on the trip. Another thing was that I delayed my Lapelgra shot until near supper time. That helped ensure that I didn’t knock myself out too early on day 3.

By the end of the day I was exhausted and didn’t do a particularly good job of feeding myself – well, that isn’t quite correct. I fed myself but the kitchen was left in a disaster state. One of the challenges of day 3/4/5 is that it is a weekend time and hubby is really busy, so he doesn’t get to the kitchen, and I’m often not feeling well enough to clean the kitchen, so it becomes a disaster – until I can find enough spoons in me to clean it.

Day 4 brings on the beginnings of some muscle pain and general feeling of crappiness. A little bit of it is queasiness so I don’t know what food to eat. We did get up for a short walk (two laps of Treehouse lane) before the rain storm. It was nice to do a short family walk – and then Scott threw the ball for Cali while I sat at watched while sitting in one of my comfy rocking lawn chairs. I really like the protection from the elements that the alcoves provide. I continue to be happy that we are now living up at Treehouse.

My nose has gone from dripping to being too dry. You don’t realize just how much nose hair helps to regulate your nostril health. The good news is that I can likely attribute the horrible sinus issues of last cycle with either the loading does of herceptin (which I won’t need to do again) or a cold. Either way, it means I’m not nearly are miserable (at least not yet) as I was last cycle at this time.

I also woke up with some soreness on the back of my scalp. That is the sign that my hair is really about to fall out. I’m surprised at how long it has lasted. I definitely see a receding hairline, and suspect that by tomorrow there will be patches of empty spots on the back of my head.

I’m managing my muscle pains with ibuprofen so far. It is working out well. I should also note that with day 2 dinner, I had a 2.5 THC/CBD beverage that helped with queasiness and the start of a headache. I find that if I’m starting to get a headache, drinking, but also sometimes the 2 THC/CBD gummy does help. The combo doesn’t give me a “high” at all, however, it does seem to do a good job of helping to manage pain.

I’m using the Dosecast app again to help track when I’m taking various meds – so that I have a better sense of what I’m taking but also so that I don’t take too much. If I’m feeling really bad, I forget when I last took something. Fortunately, that has not happened yet.

Unfortunately, it is still early in the day of day 4. In addition to some muscle soreness I’m also starting to get some bone pain in my spine. We will see how the rest of the day goes. Now that I’ve had something to eat and some coffee, I’m going to curl back up in bed and relax for a bit.

I wanted to capture with a little more detail the side effects that I’m feeling, so that next cycle I will have something better to compare with. I remember having a really hard time for a few days, but not really sure when that was – and I might have had a cold on top of the chemo so the side effects, in theory, should be less severe this cycle – and I’m hoping to be managing them better (mental note, drink more water – I just poured myself a glass to drink while writing this).

Day one side effect was mostly extra energy. I started chemo at 9 am and ended at 1 pm. Again lunch was great. I was well fed and well taken care of during the process. I did find that I was getting up to pee a lot (4 times) – I think they had a higher saline drip than the last time. I also went swimming before chemo, which was really nice. With the pre-chemo steroids in me, I found that I was swimming a lot faster than I normally do. I had to remind myself to slow down a little. When I got out of the pool I was starving – even though I had eaten before the swim. That meant we had a nice stop at Fancy Pants cafe for a breakfast sandwich on the way home, arriving with just enough time to eat, do final preparations, and drop Cali off at daycare. Next cycle I will start at 9:30, so we will have a little more time in the morning. Hopefully I’ll be able to get in another swim.

Mostly for day 1, I was an energy powerhouse. After chemo I did a bunch of outside work, as it was a beautiful day. I swept out alcoves and organized the returnable recycling for the community. It felt good. I made supper. I decided to take my zofran when I started to feel a little queasy and also took my steroid at 6pm rather than waiting until 9pm. I think that strategy worked well, as I slept pretty well.

I was cold during chemo and most of the day yesterday (day 1), until I had some tea with honey. It seems that sugar will bring on a hot flash, which is handy when I am freezing.

Today – day 2 – is a little weirder. One of the challenges is that I don’t have the signal of appetite until after I start eating, then I realize I’m starving. I also get a sense of a full head (like when your ears need to pop). This is usually relieved by eating something – especially it is something with sugar.

I did have the starts of a headache this morning, so I checked my temperature and took tylenol. I’m going to try to be more proactive around managing the headaches so as to avoid the need for codeine. So far it is working.

I haven’t needed any extra nausea meds yet, but I would not be surprised if I did. I have one more zofran that I can take, and then I have another med to use if needed. I found I didn’t need it much last cycle – that is one huge change from when I had AC chemo and had nausea pretty much the whole time.

Tomorrow – day 3, I will need to take my white blood cell booster shot. That one comes with some negative side effects, however, I am now on the double dose of Reactin which hopefully will reduce those side effects. I am also giving myself the shot so I can wait until later in the day. I will likely take it at 6pm or after supper, so that that I can sleep off at least some of the side effects. That is the theory anyways.

OK time to sign off and get outside for a bit while the weather is really nice. It is warm for a fall day, and we have storm coming Saturday (which will be a good day for me to be sleeping it all off).

I woke up Sunday morning at 5am to the feeling of hair in my face. If you recall, I had my hair cut really short, so there was no way that it could be in my face and still attached to my head. To me that was the signal that it was time to shave my head – ready or not – the time had come. I couldn’t get back to sleep so I watched a movie, then slept a bit longer. When I got up, I actually checked my pillowcase and there was no hair – there was a single hair stuck in my eye mask. That is what I felt, but I had already made my decision. It was time.

I had noticed that my hair was thinning. Every time I brushed it or washed it, I saw a few more of the longer hairs. I find it interesting that people talk about it coming out in chunks. That hasn’t been my experience, either last time or this time – perhaps that is in part because I shaved my head before most of it came out. Either way, I knew that when I ran my fingers through my hair that there was less and less of it.

It was a sunny day, so we decided to setup the clippers out in the middle of the common green (the area between buildings). We didn’t make any announcements, we just set it up. I sat in my camping rocking chair with an old sheet wrapped around me and Scott too the clippers to my head. Initially he started with a 2 but when I felt my hair, it felt too long, so I had him shave it to a one. Of course, he had to do the mohawk type photo along the way.

In solidarity, Scott had me shave his head with a zero – which is shorter than he normally has it.

Then one of my neighbours decided that in her 80 years, she had never had a buzz cut and asked me to do hers too. I shaved hers to with number 2. I think the three of us look great.

We tried to get a family photo with Scott, Cali, and I – but of course Cali just wanted to check out our new haircuts with her tongue.

Today I felt great. I started the day with a swim. A couple of days ago when I was doing my VR boxing I realized that I really missed my boxing classes. I missed the people at Dave’s multisport and all the laughter that goes along with the Monday/Friday stress relief class. I sent them an email and asked about going back – given that I’m in chemo. I was encouraged to come back and give it a try.

As I stepped into the studio, I gave a wave to Dave. He came over to welcome me back and I was holding back tears. This wasn’t just getting back to an exercise class, it was going to back to something I loved that I haven’t been able to do since this spring (I had an injury before the cancer diagnosis). I wasn’t sure if I’d be able to do it.

I’m so happy to report that I had a great class. I didn’t over do it (at least I don’t think I did, we’ll see how I feel tomorrow). I hope that I will feel well enough to go to Friday’s class – then I’ll be off for at least 3 classes as I physically won’t be well enough and at one point my platelets will be too low for the physical impact of boxing. But, when my body starts to rebound after the next cycle, I hope to get back for another couple of classes. There is a sense of ‘normalcy’ to be able to go, but also, it is something that I love doing and thinking that I’d never get back was making me sad. I’m glad I decided to reach out and try it.

When Covid hit, I learned to sew face masks. I used a variety of patterns and watched many videos on YouTube. I decided that since I can now sew, I would try making myself some chemo head coverings.

On the hair note, my hair is thinning but still very present. I don’t feel like it needs a covering just yet, but I want to be prepared when I do lose my hair. I’m also in the “nesting” phase of chemo. I’m feeling much better right now, so I’m doing things to help be better prepared for the time when I will feel like crap (about a week from now).

Here are some that I’ve tried. The first four are from free patterns. The first photo is just a fleece beanie hat – not specifically a chemo head covering, but a nice light fleece hat which is comfortable and might be something I wear for walks especially at the beach as it does a good job of keeping my head warm! The last two are from a pattern that I purchased. What you cannot see is the back – which I quite like and is why I purchased the pattern. That and I want to support the people who have the skills to create these patterns and tutorials. That being said, I’m not yet sold on any of them. I don’t think I’ve found ‘the one’ that will be my go to.

One of the frustrations I’m finding is that people post free patterns with tutorials, but all the pictures are taken with someone who has hair (often long hair), which really doesn’t give you a sense of what the had will look like without hair. If you like doing internet searches, please help me find some additional patterns and leave links in the comments. I would like to try a few more. thanks.

I’m still trying to figure out how I feel. What does it mean to be going through this again? What does it mean about the rest of my life? About survival? I feel like I should be feeling something, but I’m not. I feel like I should be processing this information in one way or another but I’m not.

I remember the relief at learning that the cancer was not in my bones – meaning it had not spread beyond the lymph nodes. It was a relief that I didn’t realize how much stress I had been holding. I don’t feel like I’m holding that stress or panic right now. I am taking things day-by-day.

This hasn’t been a great chemo cycle, but I’m optimistic that the next cycle will go smoother. I will talk to the doctor about some of the issues, but I’ve already learned that taking twice as much Reactin should help with some of the side effects (would have been nice to know that sooner). Physically, I’m feeling a lot better now than I was. I am starting to get my energy back. I’m not sniffling nearly as much. I even did a full 20 minute boxing workout (VR boxing), which seemed to give me more energy. I finished the exercise session feeling so much better.

On Wednesdays, my puppy goes to daycare on Wednesdays, and I pick her up at the LCLC (our local recreation facility). Fortunately it is on the rail trail, so it makes for a nice walk to pick her up (about 2.5 km round trip). I walked there with a zip in my step, but less than half way back my energy just crashed. I had to walk a lot slower – but we did make it back. Fortunately, I wasn’t walking alone, which made it a much more pleasant walk. If this chemo fatigue gets worse next cycle, I’m not sure how much longer I’ll be walking to pick her up!

Another thing I’ve been trying to do is make sure we make some progress on some aspect of our new home each night. Today I did some painting, so that a vanity light could be installed in the main bathroom. Tomorrow, if it is warm enough, I hope to wash the outside of the windows and maybe install a doorknob or two.

One thing we did to give us something to look forward to is that we booked ourselves a vacation to Iceland in June. We learned that as of May 31, Iceland Air will have direct flights from Halifax. That means 4 hours of fly time, rather than 10 hours with a layover in Toronto. We booked ourselves flights and a rental van / RV for the time we are there. The vehicle is smaller than our van, but is good enough. It will allow us to camp (mostly staying in campgrounds), and travel around at a leisurely pace. I’m looking forward to it.

When I told my friend that I’d be losing my hair again, she said I should do something fun with it before it fell out. I thought that was a great idea, so I asked a neighbour who always has fun hair. She asked another neighbour to help – and the two of them transformed me. Below is the closest to a before photo – although a lot of my hair is pulled back. I clearly needed a haircut!

I didn’t get any pictures of the cut before the colouring. Once the cutting was done foils were used to separate the pink and the blue dyes. Below you can see the foils with my helping neighbours. We had a wonderful time just chatting about random things while this process was underway.

And then both my stylists had to leave for other meetings before the conclusion of the story. I had to wait 30 minutes for the colour to set – so I went back home, set a time, and did something or another until I could remove the foils and take a shower.

The result was amazing. I’m so happy with both the cut and the colour. I know who I will be asking to do my hair when it starts to grow back in the odd way that it does.

I’ve loved having this new do, but it has come time for me to shower. I have noticed that my hair is getting thinner. I’m afraid that when I wash it, I’ll lose a bunch more. I’m hoping I can enjoy this cut for a couple more days before I need to shave it.

I’m feeling a little time pressure to get to sewing and making myself a couple of head coverings that I’ll enjoy wearing. Once I have enough for me, I’ll make some more to donate. The funny thing is, that for the most part I won’t wear fancy head coverings. Last time I found that a simple buff was enough. It is a bit different this time, as I’ll be bald through the winter. Wear a hat to keep warm isn’t a problem, the problem is what to do when you want to take the warm hat off – when it is too warm. For example, I’d often wear my warm hat to the grocery store, but once I got inside, I’d take my hat off while shopping. I’m not sure how the logistics of that would even work – a hat and a head covering… that will be something interesting.

Over the last couple of days I’ve been feeling a lot better. I was having sinus issues and headaches. I talked to the GPO last week, and he prescribed a nails spray and an antibiotic for concern of a sinus infection. It certainly felt bad enough that an infection wasn’t out of the question. I’m feeling a LOT better now. I didn’t have any headaches today and my sinuses aren’t sore – although my nose is still drippy/stuffy and I have a cough that is no longer a dry cough – but not horrible either.

My energy is waxing and waning. It seems that the more I move and do, the less tired I am. If I sit for too long (I had a 2 hr meeting this morning), I fall asleep. I get so tired. But if I get up to do something (and there are endless things to do when you move into a semi-finished condo), then I am like the energizer bunny going from one thing to the next. My attention span leaves a little to be desired – which is why it has taken so many days to get to this blog post.

I’m also starting to feel a tender mouth. I so hate mouth sores! They haven’t really hit, but I did notice that I couldn’t eat the lovely strawberry/apple/rhubarb crumble that I just made because it is too acidic. And things don’t all taste the same. I always wonder when I have something that isn’t as good as I expected, is it that my sense of taste is off.

On that note, my dinner is ready so I’m going to sign off for today. So far, so good.

I didn’t really expect that sensation to hit. Last night I realized that one of the things that I was missing this time around is my mom. When I was first diagnosed the recurrence, I was glad to not have to tell her. That was one of the hardest things I had to do. But this time, I realize that what I’m missing is my mom. I’m missing that sense that someone is holding me the only way a mom can. I have a lot more support this time around, but it isn’t the same as feeling your mom is there for you. I miss her so much.

I’m writing this from the chemo chair at the Bridgewater hospital. I have happy to learn that they had a whole gluten free menu for their lunch. Hopefully the bread doesn’t suck. I was able to order a grilled cheese sandwich, green beans, a salad with egg, and vanilla ice cream. That feels like a lot of food right now, but the second dose of dexamethasone is kicking in and that is making my appetite start to build.

Access to my port went well. Before I left home this morning, I sprayed benadryl spray around the whole area of the port. I then put a bunch of emla cream (a cream with lidocaine in it to numb the area), then covered it with a mepore bandage to help it soak in. It meant that it was on for over an hour before they tried to access the port – which made it less painful. The steristrips came off today. The incisions have healed well. I’m hoping to be able to swim a few days after the white blood cell booster that I get on Friday.

For today’s infusion, it is a 90 minute infusion of Herceptin (they call it Trastuzumab). Because this is the first dose, we will wait 1 hour after the dose before continuing. For future appointments, it will be 30 minutes of Trastuzumab followed immediately by the Taxotere (Docetaxel) and Cytoxan (Cyclophosphamide). Each of those will take about an hour, and there is a flush (about 10 minutes) between each. Today will be long day, next time things will run faster, but even faster I’m looking at about 3.5-4 hours. Fortunately this is every three weeks and not more frequently.

We were informed that the “toxic” part will last about 7 days. That means that for the first seven days we need to take care to reduce anyone getting exposed to my body fluids – including my dear puppy. We will keep puppy in overnight daycare on infusion day and the following day. Then she can come home as long as I’m not sweating too much or vomiting. We will make arrangements for Treehouse and other friends to take Cali if we need someone to take her quickly. I don’t want to give her up for the entire week, since mostly she sleeps with me on the bed or rolls up in the chair next to me while I work.

And now I’m going to put my computer away and eat a donut!