Category: active treatment

Seriousness is sinking in

I’m starting to shed my hair. I noticed at first when I use the toilet, and then again when I dried my hair after the shower – seeing enough bits of hair in the towel that I had to throw it in the wash!

At Wednesday’s oncologist appointment, when I asked about surgery timing, specifying my desire to spend a week in Hawaii before surgery, the point was made not to push it too late. There is enough time for that week, but I should not plan on pushing surgery out 2-3 months. The comment was in the lines of “we’ve done all this chemo, don’t waste it”. This cancer won’t be killed that easily – even if the masses shrink to smaller sizes they need to be removed.

Yesterday, I got a short synopsis of the pathology of the third mass (the small one in my left breast). It is DCIS PR/HR+,HER2- with a small Ki-67 (<5%). This is sometimes called pre-cancerous or cancer in the duct itself, as it has not yet spread to the surrounding breast tissue. DCIS has a high likelihood of turning into IDC (which my other two masses are). So this is my magic number three cancer.

I say magic number three because that seems to be my meditation number. When I took swimming lessons last fall, the instructor has me breath after every three strokes. Ever since then, three seemed to be a better number for me for meditating. When I do yoga, I hold poses for three breaths, and when I try to calm my nerves to sleep I count my breathes 1-2-3 and then repeat. So three seems to be my number.

So, now that I have three cancers, it can stop there! No need to go any further!

My plan for a triathlon before surgery will likely need to be reschedule until after surgery. The window won’t be long enough for me to manage it and Hawaii at the same time – and Hawaii is definitely something I plan to do (Maui more specifically – easy to get to from here and an easy island to get around).

I do, however, have a new plan for after surgery. One of the wonderful ladies on the Flat and Fabulous Facebook group has inspired me to aim to trapeze at Club Med Cancun in the fall of 2015. I want to be fully recovered from surgery such that I can do something so crazy as swing from a trapeze – plus they have sailing and kayaking too … some nice serious activities that require upper body strength.

I am finding this process of hurdles not dissimilar to doing a PhD. At each phase there are additional hurdles to overcome. One bit of advice we are given in the PhD is to celebrate each hurdle as you complete it. My first hurdle is AC chemo. I’ve done two treatments, so one could say 1/2 way, but that would not be fair … as I still need to recover from this second treatment before I can truthfully call it done!

I am happy that I am starting to get some productive days back. My life isn’t all about cancer anymore. I am re-emerging into my academic life, trying to pull together as much as I can to make a dissertation out of my existing thesis project. I have a couple of things that need to happen in the fall that hopefully I can make happen. If they do, then I shall have enough data to turn it into something. I have learned a lot, and do have a lot to share – I just need close it off and put it all together.

So with the seriousness of this disease sinking in, what is also sinking in is my need to focus on the future – and on what comes afterwards (or at least what I’m going to do with the next year and a half that doesn’t involve chemo and cancer surgery).

Fri July 25, 2014
A busy day with a trip to the DMV

I have needed to go to the DMV for a while. I want to apply for my California driver’s license, but also want to get a California ID, in case I cannot get the driving test in a timely fashion.

Yesterday at my oncologist appointment, I asked about getting a disabled parking permit (which allows us to book special campsites at the campgrounds – useful when the campsites are otherwise full). This actually turned out to be rather fortuitous, as the application for the permit (also done at the DMV) meant that I was in a slighter faster line up. It was still a 2.5 hour adventure, but at the end of the day, I now have a temporary California drivers license (still need to book and do the road test), a temporary California ID (which will come in the mail), and a disable parking permit. I actually found myself using the permit today, as it saved me a lot of energy when running errands – errands I likely otherwise would not have completed.

A couple of side benefits to the card is that we don’t need to pay at parking meters and we can park for more than the length of time specified in a parking zone – so when it is 2hr parking, we can stay as long as we need. That is particularly useful for when we go sailing, and tend to park in a 2hr zone and worry about getting a ticket as we are usually there for 3 hours.

Fri July 25, 2014
2nd Round of Chemo

Today was my second round of chemo. It was actually much less traumatic than I expected it to be. It really helped that someone in the BC Connections Facebook group commented that her second round went a lot better than the first – so rather than hearing horror stories about the second round, I am hopeful that things will run a little smoother now that I understand some of the side effects that I can expect. The pains may still come, but they won’t be new, and there are things that I can do in advance of the pain to hopefully prevent it.

Since chemo is a pretty ridiculous idea, I went for a ridiculous outfit! And of course we also needed the team selfie with our matching haircuts 🙂

This cycle will be 13 days rather than 14, as my oncologist wants to move me back onto the ‘normal’ schedule of Monday’s. There was no way I would be ready for chemo on day 12, so day 13 will need to do. I was kind of hoping that we would actually push it out again so I had a few more days of recovery. Oh well.

The oncologist was also encouraged by the treatment so far. Based on his exam and his notes, he seems to think that my tumor in softer than it was – which is good (means the chemo is working). Unfortunately, the biopsy results on the third mass were not in yet, so I don’t know about that one yet. I did, however, find out that surgery should be planned for 2-4 weeks post chemo – and that it should not be delayed. This means that my Hawaii trip (see Breast Memorial) will be either the week of American Thanksgiving or the following week – with surgery the week we get back from Hawaii. I will book a follow-up appointment with the surgeon in the next week or so, so that we can get a date for surgery. Apparently, things fill up towards the end of the year. One advantage to doing it this year is that it will cost us less, as all our “out of pocket” maximums reset on January 1st.

To avoid confusion – as I kept confusing myself – chemo day is now day 1 not day 0 – this aligns with the days that the doctors use as well. I’ve started a new chart for this cycle (adding in my exercise as well). So far it has the preventative stuff on it. One bit of good news is that I can take my arthritis NSAID anytime, they just don’t want me to take aspirin. Since the arthritis meds also significantly reduce the Neulasta side effects, this is huge for me, as it really helps. The oncologist recommended taking it preventatively, so I’ve added it to my chart as a reminder.

Thu July 24, 2014
Preparing for neuropathy

I have been thinking about neuropathy a bit lately – in part because several strong women in my support groups have been having neuropathy – specifically with the Taxol chemo. I’m currently on AC chemo, but when that is finished, I do 12 weeks of taxol.

Neuropathy is one of the potential side effects. It can happen in both hands and feet. In hands it means that typing becomes challenging as you cannot feel your fingers and fine motor skills become challenging. In the feet, walking and biking become a challenge. For biking, the issue is not so much the pedaling (I have clip pedals), but rather the stopping. When you stop you typically put one foot on the ground, this can be a challenge if you cannot feel your foot!

To deal with neuropathy in my hands (if it happens), I will likely be using Siri a lot. I already use dictation a lot on my iPhone so that I rarely ever type anything using the iPhone keyboard. I have dictation turned on for my Mac, so I all I need to do is hit the fn key twice and then talk to my computer, and the words appear. I can do about a paragraph at a time. It is truly amazing to see just how much voice recognition software has improved over the years. For those using PCs, I can highly recommend Dragon Naturally Speaking. I’m not sure how well it works with different accents, but it seems to do Canadian pretty well (although words like tour need to be trained).

To deal with neuropathy in my feet, we are looking into stabilizers for my recumbent. I had originally thought I would need a trike, but we really don’t have the space for one in our apartment, plus the cost is a bit much for something that I would only need temporarily. I will need something to help with balance if I have neuropathy, but also after surgery. The big advantage to my recumbent is that it has under-seat steering, so I don’t need to lift my arms to steer. However, there is an issue with balance. We have since discovered that one can buy various stabilizers for bikes. These are like training wheels but designed for adult bikes, and are much sturdier. Now we just need to research which stabilizers work best for my ‘bent.

Another issue we need to deal with is groceries. Yesterday, after grocery shopping, I couldn’t carry the groceries back to the apartment. I had to make three trips, because any weight on my left side caused bleeding at my biopsy site. So, we will be looking around for a cute cart that will allow me to load groceries from the car and pull them up to the apartment. I had a cute one from IKEA in Ottawa, but ended up leaving it there when I moved.

So, planning Becky is hoping for the best but planning for contingencies just in case.

Wed July 23, 2014
Changing cues

I’ve always been highly aware of my body. I know when it needs iron, I know when it needs food, I know when it needs electrolytes. At least I used to.

Now, I’m finding that not all my normal cues are there – so I don’t know what my body needs. I find myself tired in the morning only to realize that I haven’t eaten anything. I usually wait to eat until I feel hungry, but I’m not getting that hunger cue anymore. It is not that I’m nauseated (although that is an issue early in the chemo cycle), it is more just a loss of general appetite. My body is not signaling that I should eat. Once I start eating, I enjoy food and get more energy – I just need to remember to eat!

So today has been a slow day. I went off to the grocery store having not eaten anything, and had little energy. When I got home, I made a point to eat, which made me feel a fair bit better. Unfortunately, I think the groceries were a little too heavy, and I lifted more than I should – such that my incision from the biopsy started bleeding a little. Rather than go out and get gas for the car, or run other errands, I opted for a nap on an ice pack – which kept getting interrupted by knocks on the door and text messages … so I shall try again … nap on an ice pack. I’m also cooking a few things up for dinner tonight and to have as food for tomorrow (chemo day).

Tue July 22, 2014
Variable days

I’m finding that my days are rather variable. If you ask me mid-day if it is a good day, I will likely have a different option than in the morning or in the evening.

Sunday is a good example. I woke up early, unable to sleep. I wrote a blog post, but then I found myself feeling tired and generally not feeling great. So I decided a needed to climb back into bed. I decided to cancel sailing because I just could not image driving to San Fran, sailing for 2.5 hours, and driving back. It was more than I could mentally handle.

After another 2 hours sleep, I awoke with a crazy headache, took Tylenol and had a cup of coffee. That inspired another ’bout of writing. I wrote several blog posts on Sunday! Feeling energetic, I went for a bike ride – 31 km on my road bike – to be fair, my road bike is my easiest bike to ride, so 31 km on my ‘bent is not the same as 31 km on my road bike – but still, it was a solid 90 minutes of riding. It felt great to be back at my pre-chemo strength. That evening we even walked over to the bank (6.5 km) – more than I thought I’d be able to do when we set out (I figured I’d turn around part way).

So, looking at the morning would not have provided insight into just how my day would go. I’m finding this to be a bit of a trend. I can never tell how well the day will go.

This morning started with an MRI guided biopsy of the small mass in my left breast. This was not 100% necessary, but recommended in order to allow maximum flexibility when it comes to surgery. I also just want to know. I feel like three is my number – it is the number I use to meditate, the number of strokes I count when I swim, the number of bikes I have – it resonates with me. I have three masses in my breasts, two have proven to be cancer. I want to know if the third is also cancer, and if the third is the same kind of cancer. If it is, it just means that something when crazy in my body and spontaneously cancer grew – it is not a sign of spread – as with this type of cancer, it is each one growing at the about the same time.

After my last MRI experience (weird machine), I knew a lot more about what to expect. I asked for things to help make myself more comfortable during the procedure. I took a Lorazepam just before the procedure, so I was mostly dopy and sleepy throughout – much better than being stressed and claustrophobic – although this MRI machine was different – it was much bigger and had open sides. They get you positioned, put you in for a scan, roll you out, put in the needle based on the images, roll you back in and scan to make sure the needle is in the right place, roll you out to do the biopsy, move the need for the marker, roll you in to check that things are in the right place, put in the marker (a little piece of metal in the shape of a M), then roll you in again for one last image of the marker placement. Then after they bandage you up, they ship you over to mammography for a gentle mammogram of the marker – as a baseline reference.

I requested all the images back when I requested the original MRI images, so I should receive them in the mail sometime in the next couple of weeks.

I found myself so tired on the drive home (after we stopped for lunch) that I actually slept in the car. When I got home, I slithered into bed and promptly slept for 3.5 hours. I guess I needed that.

This evening I’m feeling good. No real pain from the biopsy. Even managed to get some work done. Tomorrow is chemo prep day – so need to get to bed soon so that I am well rested for the various errands that need to be run prior to chemo and the following less productive days. Unfortunately, the biopsy means no strenuous activity for 3 days and no swimming for a week. We shall re-visit that with the oncologist on Wednesday, as I will really really really want to be in the pool on Friday if I have the same reaction to neulasta. I got the OK on sauna use from the MRI doctor (radiologist) who also said if things are healing well I may be OK for the pool on Friday (one week is the party line but not everyone needs the full week). So cycle two won’t align with my ideal exercise plans, but we shall go with what the body wants/needs at any given time. It is what it is.

Tue July 22, 2014
Breast cancer pet peeve – it is not a “lump” (public service announcement)

My breast cancer pet peeve of the day is the word “lump” … cause, well, it doesn’t FEEL like a lump! The word lump actually is misleading and causes too many women to NOT get something checked out. It is part of why I waited a week (fortunately, I only waited a week).

So, first and foremost – get to know YOUR breasts. I checked mine every time I got in the shower. I suds up with soap and feel around and inspect. I also look at myself in the mirror and look down when I dry myself off. So, when something changed, I noticed!

Many women have lumpy breasts. Some of the normal tissue in your breast feels lumpy. It isn’t the normal lumpiness that is the problem – it is the change that is problem. The first I heard of nipple retraction was AFTER I was diagnosed. What I noticed was a hard spot – an area that felt firmer than normal – which I initially associated with what I thought might be a muscle strain, but when it didn’t away I got it checked out.

Above is a MRI image of my left breast. It shows the two masses. The upper is a known malignancy – this is the one I felt and it is my largest mass (depending on the scan measuring somewhere between 3 and 4.7 cm in its widest dimension – MRI measured it smaller than ultrasound but they won’t really know until they take it out and do a full biopsy on it). It is not a regular shape – it is not this nice round “lump” – rather it is an irregularly shaped mass (it doesn’t look 3 cm in this angle, they measure it in three dimensions based upon the largest size). The bottom mass shows up on MRI only (I’m getting it biopsied tomorrow) – it is suspected to be cancer only because I already have a known malignancy. The point I wanted to make on this picture was the irregular shape of my breast. I can visually see when I look in the mirror, while looking down that my left breast isn’t smoothly curved. This is a sign that something is WRONG!

BTW – I think it is way cool that I can just sign a form and they mail me CDs with all the images from scans that have been taken. I find the MRI images particularly interesting. I get a full copy of the radiologist’s report, so I know which images are most interesting (there are 15,000 images from a standard diagnostic MRI).

So, if you don’t do annual mammograms (and even if you do), it doesn’t hurt to just ‘cop a feel’ and check out your breast EVERY time you hop in the shower …

OK… done with the public service announcement for the day. Time for a bike ride!

Sun July 20, 2014
Mouth sores & First cycle symptoms
For the last few days I’ve been discovering what chemo mouth sores feel like. Earlier I had a few canker sores. I usually get them when my iron is low, which also happens with chemo, so I was supplementing iron which mostly kept the cankers to a minimum. Then I got a true chemo mouth sore. It is nothing like a canker sore. It formed on the side of my tongue, which apparently is particularly sensitive (ouch).

There are many mouth wash recipes on the Internet, so I asked Scott to find one and make me a mouth wash from a recipe for treating mucositis (he made it in a small nalgene bottle for me):
- 14 oz of warm water
- 1 Tablespoon Baking Soda
- 1/4 Teaspoon Salt
It seems to be working. I used it last night and this morning (and after anytime I eat) and the sores are starting to get better. I now know why the doctors ask “can you eat”, as the concern isn’t the sore itself (that is a chemo side effect, and it will eventually heal), their concern is that you are eating enough so that you stay healthy overall. Fortunately, among the odd prescriptions I got from emergency (even the dermatologist was confused by this one) was a bottle of oral viscus lidocaine (like the dentist uses before putting in a needle), which is used to help provide symptomatic relief of the mouth sores to allow you to eat. So, for this one, I was prepared in advance.

I’ve created a little chart for my oncologist (and myself to allow for planning next cycle) of my various chemo symptoms in the first cycle (if you think something similar would be useful for yourself, send me an email and I’ll send you the template – it is done in Powerpoint). I will use it when I next see the oncologist to get him to write in the preventative section at the bottom information about when I should not swim, and any other activities I should be limiting at various times, as well as when I can and cannot take NSAIDs. I’m finding that I need the visualization to better understand things – and I want to make sure that I’m not being too cautious about swimming, as it is something that I need for my mental health – especially if biking may involve blistering.
Sun July 20, 2014
A new visualization

Didn’t sleep well last night and I’m feeling like I’m not get in enough biking, so decided to go back to bed and then go for a bike ride this afternoon.

Sleeping, I had this crazy dream. I was in my parents back yard (except it was a lot more elaborate with a tiered swimming pool. The yard (as well as the one across the path – interesting the path was like the back yard in Kitimat) both had kids drinking, doing drugs, and swimming in the pools. It was a wild party (for some reason the gates were low chain link and they didn’t have locked doors). I came down and started yelling: GET OUT, GET the F*$K OUT, going from person to person. They were being difficult, moving along slowly, but I kept yelling. I went to use the phone, which looked more like an ear cleaning syringe thing (see image):

Only I talked to the bulb end and said “call 911” and put the other end in my ear. I got a message (sort of like Siri) saying “sorry we cannot help you right now, we are busy doing something else” … I screamed … and then I woke up.

It had me thinking, the pool is sort of like a metaphor for my body, and the uninvited guests partying and making a mess of the pool and yard are like cancer … and I was screaming “GET OUT, GET the F*$K OUT” …

It might prove to be an interesting visualization during my next chemo treatment … not exactly little pacmen going about chomping on cancer cells (although that worked conceptually, I didn’t really buy into it) … not completely sure how this visualization would work …

We’ll see, either way, it felt good to yell, even if it was just in a dream …

and now for a cup of coffee!

Sun July 20, 2014
Things I love about a shaved head …

I find myself wondering if I will enjoy this as much when I’m bald as I am now? I am thankful that I look good with a shaved head. I go out without covering it – only covering it up when I’m out in the sun so that I don’t get a sunburn. With nothing on, it feels like I’m wearing a hat all the time – the thin layer of hair seems to have the same sensation as wearing a tight skull cap.

As I mentioned previously, I am enjoying the feeling of the wind in my hair when I am in the car with the windows rolled down. I almost want to stick my head out the window like a puppy dog! Unfortunately, I cannot stand the sounds of other cars, so this pleasure is reserved for when I’m driving on the back roads or side streets.

I find myself petting myself (rubbing my hand down the back of my head). The feeling never gets old – I catch myself doing it when stopped at a red light waiting for the light to change. I’ve also discovered that I love the feel of the cold water on my head when I first jump into the shower after swimming (it takes a good 5 minutes for our hot water to reach the ensuite bathroom). I used to make Scott shower first, as the cold water didn’t bother him – now I’m finding that I enjoy it so much that I jump in first!

And of course, it’s a lot of fun when Scott pets me too 🙂

Sat July 19, 2014