Category: Here we go again

For me, it looks like the year will be ending with a whimper. I feel like this last dose of TC was stronger than previous doses. It is certainly hitting me harder. I think I got lucky the last two cycles and came to expect it to not be too bad.

What is making this cycle so much worse? Muscle/bone pains. It started out like the more familiar bone pain in my spine and hips – where a lot of bone marrow is made. But then it has turned into shooting pains in random areas – mostly my hips but also my ankles and wrists, upper arms, and knees. I think it is nerves misfiring which then causes my muscles to ache – but not the big muscles, rather all the little ones that support the big ones – which makes me feel weak when I walk – making me wonder if my hip or knee might give in.

I’m also noticing a lot more neuropathy than previously. This means that I don’t feel my feet very well (or my fingertips – but I seem to be able to type). At this point, it isn’t painful neuropathy, just numbness.

And so, for the most part, this New Year’s Eve, I’m lying in bed feeling sorry for myself, looking for a good book to read or a good movie to watch.

The good news is that my tooth isn’t bothering me as much this morning. It was bothering me last night such that I feared I’d be calling the dentist this morning for an emergency root canal. Hopefully, that can stay stable enough that I can avoid the root canal for a couple more weeks and deal with it after I’ve recovered from this chemo round.

Going into the new year, I will need to do a lot of reflection – reflection on what this whole recurrence means to me and how it might change what I’m doing – or not – as it doesn’t need to mean a change in anything. I just don’t know either way.

First, an update. After experiencing stress dreams, I left a message for my oncologist to inquire about the next steps and mentioned that I had not yet heard about a radiation oncology appointment. The following day, I had an appointment with the local General Practitioner Oncologist (GPO), which they referred to as a toxicity appointment, to ensure that I was fit to proceed with chemotherapy.

During the appointment, I expressed my concern about the lack of information to the nurse and doctor, who reached out to my oncologist in Halifax. I discovered that they regularly communicate via text message and that my oncologist in Halifax was surprised that I had not yet been contacted by radiation oncology. As a result, the GPO here made an additional referral and provided an update, stating that my chemo was progressing as planned, with my last chemo session scheduled for December 27th, the first day they reopened after the Christmas/Boxing Day holiday.

On Wednesday December 27ty, as I sat in the chemo chair, I was informed that my next appointment was to be in Halifax on January 16th, which was odd because I already knew I had a phone appointment with my oncologist around that time. I’m grateful that my oncologist doesn’t require me to drive into Halifax for appointments that mainly involve discussions without any physical exams. It saves both of us a lot of time. However, it would be great if they could implement video conference calls for oncology appointments, as they do for other telemedicine consultations. Fortunately, the situation is gradually improving.

While the nurse was preparing my medication, I received a phone call from radiation oncology. My appointment is scheduled for Tuesday, January 2nd, in Halifax. They didn’t specify the duration, so I’m unsure if it will only be a consultation or if they will also include the simulation at the same time. There are many logistics to arrange because the radiation treatment will take place in Halifax, and it’s not feasible for me to drive there and back every day in February due to weather conditions and the 1 hour and 15 minutes round trip under normal circumstances.

So, within a week, I will have a better understanding of the next steps. The GPO mentioned that radiation often starts four weeks after the last treatment, so it will likely be in the first week of February. I have a mugga scheduled on January 12th to check my heart, a follow-up with my medical oncologist on January 16th to discuss the overall strategy, and a Herceptin infusion on January 17th. January is going to be a busy month with medical appointments.

Now, let me share a couple of stories about chemo brain. It affects me in peculiar ways, especially right after my TC infusion. I’m thankful I’m done those! I struggle with multitasking when experiencing chemo brain, and my thinking tends to be quite literal.

The first incident happened when my husband was installing a water hose for the fridge. He told me to “watch the hose” to prevent it from spraying everywhere when he turned it on. So, I stood there watching it as he turned it on, and it sprayed everywhere. He didn’t instruct me to hold onto the hose to ensure it didn’t spray everywhere. It didn’t occur to me that I should be holding onto it. I simply followed his directions.

Then, yesterday, he asked me to create some simple signs to be printed on 11 x 17 paper to guide the delivery drivers. So, I did as he requested and made the signs. I made the text as big as it could fit, but it never occurred to me to make the signs in landscape orientation so that the text would be larger! Of course, he didn’t notice until after printing – oops. The funny thing is, I remember thinking that I wanted the text to be larger, but it just didn’t cross my mind to change the page orientation.

These are the kinds of silly things that happen with chemo brain. In one moment, I can handle higher-order thinking, and in the next, my brain takes things quite literally, and I struggle with multitasking (I attribute the latter issue to being interrupted from a writing project and transitioning to sign making, which involves different cognitive processes).

I find it amusing when these incidents occur, as long as they don’t cause any significant problems. It’s surprising that it hasn’t happened more often given the intricate details I’ve been dealing with during construction. Fortunately, I’ve been able to rely on others for double checking at least some of my issues.

I used to use writing as a way to help process my emotions. I’m finding that I’m writing more about the mechanics of what I’m going through but not tapping into the emotions. I started writing a story about my recurrence, and how I feel so different than I did when I went through my initial treatment. Then I realized that all I had written was the detailed timeline of what happened – there was no emotion in it. It was just, I did this, I waited, I got this result.

I had some emotions in the early days, but I didn’t blog about them. I didn’t want to start blogging about this cancer journey until we had some real information. Even then, I haven’t written much. I haven’t found a way to tap into my emotions – mostly I’m just living life numb, getting by one day at a time.

I think that feeling is about to change. Last night I had an anxiety dream. It is the first time since all this started that my anxiety meds didn’t keep it all under control. I don’t remember what the dream was about specifically, but I do remember waking up and saying to myself – that was an anxiety dream.

I think the anxiety is about not knowing the future. I’m close enough to the end of chemo (last one on December 27) that I want to now what is next in my treatment and when is it going to start. I know that I won’t be doing much in January as I’ll need to recover from the chemo and then get a root canal (what a way to celebrate getting over chemo!).

I think it is in part that when people hear that it is my last chemo (this doesn’t include the year of herceptin), they ask about what is next. And I don’t know. I don’t know how long radiation will be. Part of me is hoping that I won’t need radiation. I know that isn’t rational, but it is how I’m feeling. I’m also wondering about future screening – when treatment is done. I’m fully aware that I initially had cancer on both sides, and this recurrence was only on one side. What does that mean for my likelihood of recurrence on that side (likely nothing and if something was starting up, this chemo probably knocked it out). Given my lower ER status, will I still need to do hormone therapy? What about Zometa, is that still on the table? So many questions. I see my oncologist in mid-January, but I don’t think I can wait that long.

On another note, it doesn’t look like I’ll lose all my hair. It is weird. I have lost a lot of my hair, but some of the spikes from the last shave are actually growing. I can tell the old growth because of the colour. Any of the new hair coming in is more like clear baby fuzz. I do look enough like a cancer patient to have been asked if I was on chemo. I think it is the tiredness in my eyes (and lack of eyebrows) that is a sign.

Last cycle, today was my nadir – my low day. I did some tasks in the morning and then proceeded to crash. I’m going to see how much I can do before I need to crash today. Yesterday I had a nice hour long nap in the afternoon which kept me going for the rest of the day. With Christmas coming, I have a few more tasks I want to get done. I don’t want to go anywhere near grocery stores this weekend!

Finished the worst of cycle three. The nausea was under much better control, that I didn’t feel nearly as bad. I did find that I tired easily and I slept for 13-hours on Sunday night.

I also had a weird side effect that started on Monday and is just now resolving. I realized on Monday that I could not taste salt! When we had a power outage on Monday near dinner we grab some McDonalds and went to a friends for a visit. The fries didn’t taste like much – they just aren’t the same without the salt. The pistachios I tried also didn’t taste like much. Makes me wonder about the food I made – and how salty or unsalty it was! It is difficult to cook when your taste buds are lying to you! Fortunately by Wednesday night I was tasting salt again.

I don’t recall whether ir was Monday or Tuesday but I’m definitely noticing neuropathy in my feet. It is odd because I can feel temperature and presure if there is enough of it, but not tactile sensations. It is really noticeable when I’m in the pool swimming. I’m going to have to start walking with my poles again. I noticed that I’ve had a few times where I’ve rolled my ankle while walking. I think that is from not noticing that the ground wasn’t level.

My energy levels are certainly lower this cycle. I think I’m feeling the effects of low red blood cells. My white cells were normal before chemo – thanks to the white cell booster – but there is nothing that they do for the red cells. I suspect they will continue to dive – but I only have one more treatment of the CT (Taxotere and Cytoxan).

I’m realizing that I know little about the side effect of radiation. From from what I’m reading the first couple of weeks will be mostly normal and the fatigue will start to set in and there may be (likely) skin issues (like a really bad sunburn). But that is all that I know of. I don’t know if there will be any other side effects.

To complicate matters, I have a tooth infection. It needs a root canal. My dentist called up my oncologist and they chatted. I’m on an antibiotic now for a week which will hopefully calm the tooth down. We are trying to avoid doing the root canal until mid to late January when chemo is done and my blood counts have rebounded

I’m certainly having a hard time taking it easy. It is in my nature to be go-go-go and with the final steps to getting condo certification happening, I find myself wanting to be helping get things done. I’ve been doing some small drywall repairs and will do some priming and painting soon. Of course, there is still some minor painting needed in my home,

I also have some sewing projects I’m trying to get to. The good thing is, that when I’m too tired to do anything else usually I can still do some sewing.

Just when I thought I was in the clear, I got hit by a wall.

I didn’t start the day tired – or at least I don’t remember starting the day tired.

I put together a new ikea shelving unit and it exhausted me. I found that I had to stop and rest. I was sweating like crazy.

I walked around the construction site doing an inventory on some tub surround work I’m doing, and did some light sanding. This took everything out of me. I came home and showered, all covered in dust and promptly laid down. I spent the majority of the afternoon asleep or in that state of awareness but not awakeness.

I eventually dragged myself up to make some food.

It is clear to me now that my schedule that shows my low white cell counts doesn’t account for my low red cells. This wasn’t the kind of fatigue that is resolved by taking a walk – rather it was pure exhaustion, where the effort of doing a little bit of physical work knocked me out. I gave myself permission to spend the rest of the day/evening in my chair watching TV.

I suspect that tomorrow will be somewhat similar. I’ll try and get out for a walk or something to see how I feel. Given how much I slept this afternoon, I’m hoping that I still sleep well tonight. Sprinkler guy is coming as early as 7am tomorrow morning to fix the piping in my hubbies office (so I might actually get my office back – after I finish painting it!).

Now it is time for me to chill.

Mostly I’ve had good energy and been doing a lot of stuff but also taking two hour naps.

Monday I got up at 6:15 for a swim. I had a great swim – 750m – then came home and slept for 2 hours. I was also able to do 20 minutes of boxing and some work spackling and caulking. It was a really productive day.

Tuesday I had an 8am meeting. I managed a lot of work, but was beat by 4pm and napped for 2 hours.

Today, I slept a little later before swimming, ran an errand that involved 40 minutes of driving, then came home and napped for 45 minutes.

I am now at the point where my blood levels should be rebounding. I have energy but I tire easily. I also have some tenderness on my tongue which means I’m not apt to eat acidic food, but it isn’t really bothersome. Oh and I still have some hair!

In some ways, I’m feeling like a chemo faker – I feel like this is easier than it should be. It is certainly easier than I remember it being. The hair thing is what is throwing me off the most. My head is shaved to a stubble. The hair is thin, but it is definitely still there. I keep wondering when it will fall out. Likely not until after the next treatment. It is weird because both taxotere and cytoxan have hair loss as side effects.

I’ve gotten pretty good at making beanies out of fleece. They seem to be my go to head covering. If I think I’ll be going indoors, I wear a thinner one. One challenge winter has, is that you need a warm hat for outside, but when you get inside it can be too warm.

I don’t have a sense of what is to come after chemo – or at least when it will come. Radiation will likely happen, but I’m not sure how long after chemo – especially if I’m doing this well with the chemo.

It does make me want to book a ski trip for late January, early February. I have a phone appointment with my oncologist January 16. I saw chemo on my schedule for the 17th and thought I should remove it because my last chemo is December 27 – totally forgetting that I will have herceptin every 3 weeks for a year. That is still hard to get my head around.

It does mean that I should be able to plan a ski vacation in the week or two after that. I will need to call my oncologist and ask.

And now, I’m doing to get out of my comfy bed/bean bag and do some trim painting 🙂

I don’t use an alarm unless I have an important meeting. Mostly I let my body decide when I should be up – and a normal time is somewhere around 7:30am.

Friday (day 10), I woke up late – around 9:30. Although I slept in, I still had lots of energy and got a lot of physical work done.

When I woke up on Saturday morning (day 11) late, I felt like a truck had hit me … well maybe not physically, but I was so tired, I almost had my coffee and then went back to sleep. But alas, a puppy needs walking and so does Becky when she is experiencing fatigue. So, I went out for a walk on a beautiful (if not cold) sunny morning and felt amazingly better. Low energy for physical stuff, but I still managed a 2.5km walk in the afternoon – which included its own adventure.

When we (me and whomever is walking with me) walk Cali on the trail away from town, there is a great stretch where I can throw the ball. There is small creek on each side of the trail, but I wasn’t too worried. Cali is good at retrieving the ball, even when it is in the water. On the early part of the trail, the banks are pretty steep (about a 10 foot drop to the creek), where later the creek is right beside the trail. It isn’t really a creek, more of a ditch with water flowing through it. Anyways, as is inevitable, the ball goes over the bank and into the water. What we didn’t know, was that the ball we like to use onsite, which has a hole in it and whistles when you throw it, doesn’t float! Cali found the ball, but wasn’t about to put her snout in the water to go get it.

After a little debating and finding a couple of good trees to anchor on, I climb down to retrieve the ball. I all see it, so it didn’t make sense to abandon it. Fortunately, the hole in the ball also makes for a great thing to put a stick through, allowing me to retrieve the ball without having to get too close to the water. My walking buddy had to make sure there was photo evidence.

Although I get out of breath easily after climbing up the hill, I was still able to continue on our walk. I find that I am tired but getting out for a walk helps.

Today, I woke up after 9am and lounged in bed until 10am. I’m clearly in that Nadir – low blood count state. My handy little side effects calendar tells me my white cell and platelets are low from now until Wednesday. Mostly this just means more sleep and finding the motivation to kick my own butt to get up and go for a walk.

But before I do that, it is time for my second cup of coffee!

I have a new found sense of energy that surprises me. Initially, I found that I got tired, but if I sat down for 5 minutes, I was recovered and ready to go again.

It is day 10 – Friday – and I should be near my nadir (lowest point in blood counts). And yet today, I walked Cali on the beach, driving both directions. I did 20 minutes of VR boxing, and I did an hour of drywall repair (going between units skimming the drywall on the tops of the bathtubs.

In addition, I’ve been doing a bunch of cleaning and organizing inside my kitchen. My house is starting to get less cluttered which is nice.

I do notice that at this time I am sleeping longer. I haven’t been napping during the day, but when I fall asleep I often stay asleep for 10-12 hours. Perhaps that is where I’m getting my energy – from the longer duration of sleep.

I’m just so glad that this cycle is going to much better than last cycle. My nose isn’t really running anymore. I did have to put some vaseline in each nostril to keep them moist. Interestingly that seems to also keep them from dripping all the time. I suspect the dripping was the body trying to put in moisture, and without nose hairs, it just drips out. My nostrils are now significantly healthy than they were at this time last cycle.

I do notice the beginning hints of tongue sores. So far it hasn’t affected my ability to eat anything. I do a special rinse after meals and I use a biotin mouthwash after brushing which adds moisture to prevent dry mouth, which seems to keep the sores at bay.

I don’t want to jinx it, but this is to nearly as bad as AC chemo, and not nearly as bad as my first chemo cycle. If the next two are anything like this, I know I can get through it. But now it is getting late (10pm) and my bed is calling.

Day 5 is pretty much the most miserable day of the cycle, with day 4 being a close second. I did get out to walk a couple of times, but mostly, I felt hungover all the time. Facebook also reminded me that on November 19, 2014 I had my first cancer surgery. It reminded me this with a picture of a very bald and pale me – looking rather unhealthy! I chose not to share the photo this time, as it is a member I no longer want to be reminded of.

On Monday (day 6), I realized that the feeling I was having was a form of queasiness more than anything else. I was have the occasional bone twinge, but mostly, it was that feeling of yuckiness. I asked for more zofran (ondansetron) which works a whole lot better for me that the other stuff they gave me. Unfortunately, I missed the phone call back, so it wasn’t until late in the evening on Monday that I got my hands on some. I chose not to take it at bedtime as I knew that I didn’t need it to sleep. They were really concerned about giving it to me because it can cause constipation. Fortunately, I know how to manage that in my body, and it is much easier to manage than the constant queasiness.

This morning (day 7) I woke up a little queasy and took a zofran. I am amazed at how much better I felt all day. It is wearing off as I write this, but that is OK, as I’m winding down for the evening anyways. If I’m queasy when I get up tomorrow morning, I’ll take another one along with the requisite anti constipation stuff (restoralax) which is pretty much the same stuff you take when doing a prep for a colonoscopy.

Other than queasiness one of there annoying side effects is super dry finger tips and heals. It is like getting constant hang nails, but also that my finger tips get so dry that the skin cracks open. Fortunately, for small cuts like that, crazyglue is amazing. I’ve also bought some silicone finger covers which are good for putting cream on my fingertips before bed and holding it in but also good for flossing my teeth and doing some other chores while avoiding unnecessary pain. Even typing! I did have to add additional fingerprints to my laptop so that I can login with a something other than my index finger. For the most part, my finger nails are doing well. When I did Paclitaxol, my finger nails were heavily damages, so I’m glad to not have that damage now.

My heels feel similar to how they do in the summertime when I wear sandals too often. They are dry and hard and cracking. Putting vaseline on them sometimes hurts – as the cracks are getting deep. I bought a new pumice stone for the bath to hopefully help remove some of the harder stuff. I’ve also found my “heal socks” which are socks that just cover the heal and have a gel pad over the heel. I can then slather the heels with a thick cream and wear those overnight and it really helps to soften them up.

The final side effect that I’m starting to deal with – started a tiny big yesterday but is much more obvious today is tongue sores. I think it is funny that they are called mouth sores, when really, at least for me, they happen on my tongue. It makes it more difficult to move food around in my mouth and to clean food out of my mouth. I rinse my mouth and am surprised by just how many little bits of food was still in there. I have some “magic mouthwash” which helps with the pain. It is mostly a nystatin (for thrush) and lidocaine for numbing. I rinse with it and the my whole mouth and lips go numb. When my mouth is like this, my taste buds are off – nothing tastes quite right. I’m also more sensitive to acidic foods. I will likely be enjoying mostly smoothies and soft food tomorrow.

Energy wise, I’m doing create today. Got out for a nice hour long walk with a friend, as well as laps of the community with Cali a couple of times. Walking is so important, especially when the sun is shining – even when it is cold outside.

I still have hair on my head but its days are numbered. For the last couple of days, I’ve been waking up to a sore scalp. I find that I need to massage it in the morning to help resolve the soreness. This evenings shower, I found the telltale little hairs all over me when I tried to dry off (had to get Scott to replace my towels and dry off again). Until the hair is gone, it is important that I use a different towel to dry my hair than my body – otherwise, I’ll end up itchy with tiny hairs all over me!

My schedule tells me that I’m entering my white blood cell count low. Over the next few days, my cell counts will tank before they start to recover before the next cycle. Hopefully that won’t slow me down too much. If it is sunny out, I like to be out doing things, and I volunteered to do some additional drywall repair for the community – in addition to trying to spend at least a little time each day working on something in our how to help make it more complete and organized. Yesterday I built the lower half of the front hall closet so we now have a few baskets to put mitts and hats in, as well as more space for hanging jackets. Today I installed a couple of our new blinds. I have two more that I can install, likely tomorrow, and the final one will need to wait until I finish painting the trim in the back bathroom.