Category: chemo

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
Overcoming Inertia

When I get up in the morning, I always find it a struggle to get motived to go for a swim (or bike ride). That inertia can sometimes be overwhelming when I’m not feeling 100% – however, once I’m in the pool swimming or on the bike riding, I love it.

To help me keep motivated and overcome this inertia, I’ve done two things. I’ve created a Facebook group (anyone interested is welcome to join it – https://www.facebook.com/groups/RJHexerciseTeam/ – it’s a closed group so I need to approve memberships). This group tracks daily exercise. I see may of my friends doing incredible things to support me in exercising, as they too take on new challenges. It feels good to be joined in the journey, but also helps to encourage me to get out as I need something to write about when I create the exercise poll each morning.

My other way of motivating myself is to set a stretch goal. This is a goal that I may or may not be able to accomplish – something kind of crazy – but also achievable. Chemo may make it impossible, but it gives me a reason to get over that morning inertia and get into the pool (note that I only swim in the morning, because that is when the pool is at its cleanest). Most of the time I have the pool to myself. So, my stretch goal is to do a triathlon in December (after chemo before surgery). I am still trying to find a tri that I can do (something in California so I can easily get there without flying ideally). Regardless of what it is, it helps me when I’m swimming in the pool to swim just a little bit longer (although when I bike I’m trying to hold myself back a bit as I tend to overdo on the bike). I’m now thinking of the couch to 5km program. I’ve never been a big runner (back arthritis makes it a challenge), but I can also walk and work on walking faster.

So, what do you to help get over that inertia? To help motivate you to exercise when you aren’t really feeling like it?

Sat July 19, 2014
Who would have thought … I look sexy in a buzz cut!

Today was the trip to the really nice lady who volunteers to shave heads for those who are going through chemotherapy. We decided we needed a before picture – as Scott was also going to get his head shaved (in part in solidarity, but more because he needed a haircut).
As she shaved my head, I was pleasantly surprised by the result. I actually look pretty good with a buzz cut.

Afterwards, Mom and I went shopping. I started out wearing the head scarf but soon found myself feeling just fine without it. I was especially amused with the feel of the wind on my head with the windows open in the car (usually it drives me nuts to have the windows open as my hair flies everywhere). Then I discovered my shadow, which is very odd looking and still catches me by surprise.

There are so many new sensations – it is amazing. Even a task as simple at putting on a t-shirt feels completely different. I’m looking forward to tomorrow mornings swim and shower!

Now I just need to get a few nice pairs of dangly earrings (I welcome donations/gifts). I don’t normally wear earrings, but long dangly earrings suddenly help me dress up nice. I was never really big on fashion, and now I find myself buying a bunch of nice clothes so I have something fancy to wear to various appointments and meetings.

Definitely feeling good today 🙂

Fri July 18, 2014
In for an emotional day (maybe)

I’m happy to report that the worst of the bone pains has passed. Once the nurse called me back, she looked into it, and advised that I could take an NSAID (like ibuprofen) for the pain. I have stronger NSAID for my arthritis, so I took one of them and within 30 minutes the pain had almost completely subsided.

Yesterday was also my most tired day. I took a nap at 11am and woke up at 2pm. I clearly needed to spend the day mostly sleeping (although I did do yoga and go for a walk – albeit a short walk). Both the yoga and walk made me feel better – so as much as it is difficult to motivate at times, I know that getting out and exercising does make me feel better.

Today I get to go swimming again. The nurse explained that the bone pain is caused by the overproduction of white blood cells being pushed out from the bone marrow into the blood. Since there are a lot all of a sudden, this causes pain – but it also is a sign of the rebound. So with the pain stopping (I’m sitting writing this with no medication in me – so it isn’t the medication dulling the pain, rather then pain being finished), my blood counts should be back up which means swimming is back on the agenda (yay).

So, if chemo is day 1 (we are recalibrating to a 1 offset rather than 0 as that is what most of the health folks do) then day 11 is my rebound day. I think I will create a graph which will allow me to better forecast symptoms and see if cycle 2 is similar. If I understand this correctly (crossing fingers), I’m not in recovery mode until the next treatment, which has been pushed to Wednesday because my oncologist is on vacation. Currently, the schedule has round three moving back to Monday, but I cannot imagine going back in to chemo at day 12, so we will definitely need to put that out. I may be strong, but I don’t need to unnecessarily push myself for the convenience of someone else’s schedule.

I mention in the title that today may be an emotional one. Today I get my head shaved. If you haven’t done chemo you may not understand this idea of proactively shaving your head. There are a couple of reasons for it. The practical reason is that hair falling out in clumps is a pain. The second, more important one, is an exercise in control. If I’m going to lose my hair then I am going to control when it happens. Control is a huge issue with cancer, as it is one of the things you lose. You lose a lot of control over how your body is growing, how it reacts, and the various schedules of appointments and such. So, when you have an opportunity to take control and do something on your own terms, it can be important for some people to take control. I admit it, I’m a control freak. I like to plan things and I am already struggling with my inability to plan the exact dates of our Hawaii trip because I have no clue how I will be feeling.

And so, I am taking control of my hair, and having it shaved today. Scott will get his head shaved too. We’ll take a fun selfie when it is done! I’m looking forward to seeing what it feels like to have my head rubbed, the same way I like to rub Scott’s head right after a hair cut!

Thu July 17, 2014
This too shall pass

Started at about 5pm last night, I felt these pulsing pains up my spine. By 8pm last night, they were excruciating whenever I was in a seated position. I was lucky that Mom was with me at support group, as she was able to drive me home. I could not imagine having to drive with this happening. I was able to be in the passenger seat with the seat partially reclined, so that I could navigate as mom got her first experience with California driving.

I had been warned about what might happened during the Saturday support group, when one of the ladies explained it. I’m at my blood count low as well (nadir), so I’m also tired. The bone pain is caused by the neulasta, which is a white blood cell booster. What is happening is that as the chemo leaves my system, my bones start reproducing blood cells. My counts should rebound to almost normal in the next day or two. But the white blood cell booster means that my body is also suddenly producing an excess of white blood cells all at once. So the bones go from not producing new blood cells (or producing them slowly) to having a sudden growth spirt, and with that comes pain.

The pain I have now is when I’m sitting (ironic, as I usually cannot work while standing as my arthritis gets in the way, and now I can only work while standing). I may also try going out for a walk, although it is a rather warm day out. I wish I could swim, but with my blood counts low, that is not recommended. I am also in pain if I lay down in the wrong position. So I need to be in just the right position in order to sleep. I’ve asked my oncologist for some good pain meds until this passes – just waiting to hear back. Unfortunately, Wednesday is not the best day to contact them, as my oncologists’ nurse doesn’t work Wednesday (there is someone that covers for her) and my doctor is on vacation this week, so the Wednesday nurse needs to track down the backup oncologist (who doesn’t know me) in order to get that prescription.

If this happens next cycle, I shall be prepared for it! They actually don’t give you much other than anti-nausea meds for the first cycle, and they wait for you call. The idea is that everyone experiences chemo differently, so they don’t know what you will need. They wait until they find out what you need then prescribe it. At this point, it is all about managing the symptoms. Unless the problem is life threatening (more life threatening than the cancer), the goal is to keep with the chemo regime on schedule through to the end.

One thing that I’ve learned though is that although neulasta is required for the AC regime I’m on, many women opt to not take it. The clinical evidence is that it reduces hospitalization by 20% – however if you are someone whose white blood cell count doesn’t dip too low, then it is an unnecessary precaution. In essence this is a medication that manages a side-effect of the chemo, and the side effects of the neulasta can be worse than the chemo itself. So it all becomes about deciding which is worse. What the neulasta allows me to do is be more active. If I didn’t take it, then I’d need to be a lot more careful about interacting with people during my low days, as my white blood cells might be a fair bit lower, and therefore my risk of infection higher. Since I need to interactions with people for my mental health, it probably makes more sense for me to deal with the neulasta side effects than it does for me to not take it.

So my motto for day it, ‘this too shall pass’ … although I’m also hoping the nurse calls back soon to tell me they have sent a prescription into the drug store for me!

Wed July 16, 2014
Doing Better

Thank-you everyone for your support during my meltdown phase. I know that I shall have more meltdowns, as they are a natural part of this process. I was actually getting concerned that I had not had one. They are like earthquakes, if you don’t have smaller ones for a while, you end up with a big one. I had a small meltdown during the first chemo treatment, but it wasn’t the ‘big one’ that I knew I had coming. Sunday night was much more of a big meltdown.

I’m highly aware of my emotional state and generally doing what I can to avoid depression. I know that depression is often a ‘normal’ part of a cancer diagnosis. I’ve suffered from depression before, so I know what it feels like, but also, have a sense of when I need to ask for help (or at least I think I do). I know that if I don’t re-bound, then I need to consider anti-depressants – but I’m hoping to avoid that. Shorts bouts of meltdown and crying are OK and even healthy – but if I cannot recover from them, then I know I need help. I will try to avoid anti-depressant medication if I can, but if I feel the need I’m also not opposed to taking it. It just adds one more thing to my list, and unlike most of my current medications, anti-depressants are not “as needed”, rather they require a regular regime with severe side effects for missed / late doses.

After dropping Scott off at the airport for his business trip yesterday morning, Mom and I went for a nice drive along the California coast (Pacifica to Half Moon Bay), stopped for lunch at the Ritz Carleton Half Moon Bay (a bit disappointing, so we won’t repeat that but it was still a nice visit with Mom), and then home along Skyline Boulevard (top of the Santa Cruz Mountain Range). It was nice to take a day off and do some touristy type stuff.

Today I have a dermatologist appointment (follow up from the emergency visit the other day). I’m happy to report that after a day of treatment with creams, my hands are almost completely recovered, with barely a sign of the initial blisters!

With the improvements, I’m going to go for a short bike ride this morning. I’m NOT going to overdo it. I will take out my recumbent so there is little pressure on my hands. I need the cardio in order to stay sane.

I should be on my “low” right now from a blood count level. I don’t actually feel that tired – I’m actually feeling remarkably well. I’m waiting for the ‘brick to drop’ in that some people experience bone pain when the chemo wears off and the neulesta (white blood cell booster) suddenly kicks in. So far, crossing fingers, I’m good.

Tue July 15, 2014
Pondering the PhD
(This article is cross-posted on http://rjh.goingeast.ca).

When I was diagnosed with breast cancer, one of my first decisions was to put my PhD on hold. I had the opportunity to take a one year (maybe longer) leave of absence in the program (that is, to stop the clock). This was a pretty clear decision as my data collection was not complete, and in order to complete it, I would need to travel to Ottawa once per month over the next 6-8 months, which was no longer going to be possible.

With the stop in my PhD data collection, my current research study is coming to an end. I have a few loose ends to tie up, but, unfortunately, I do not believe there will be enough data or enough of a study to complete a dissertation (I may get one or two journal articles out of the data). I am proud of the current state of the first phase of the study, which resulted in the content on the website http://ipad-fm.ca and the eBook “iPadagogy: Employing the iPad as a Clinical Teaching Tool”, which is now available in the iBooks Store.

I’m not sure what I’m going to do when I finish treatment. Treatment just began (20 weeks of chemotherapy, which will be followed by at least two surgeries that will take another 6 months for recovery).

I am pondering my options. In an ideal world, I would go back and begin a new project. One that only takes 3-4 months in data collection, and that would allow me to then get to data analysis and writing of the dissertation. I’ve already spend three and half years doing coursework, writing comprehensive exams, and writing a research proposal. I’ve done small research projects and written and published several peer-reviewed conference papers. I just need to do a good research study that allows me to demonstrate that I can do this, and that gives me enough useful data to write a dissertation.

Looking at going forward options, I am wondering about transferring to another university. I am wondering if there is any way in which to transfer that doesn’t requires a complete ‘restart’. I’m not particularly interested in going back to do two more years of coursework. I’m OK with repeating some stuff, but I’d like a streamlined process. If I’m studying in Canada (or the US I think), I may still be able to access the last two semesters of my SSHRC Doctoral Fellowship – so I even bring with me some funding although not enough to finish the degree. I live in California, and now for medical reasons, a relocation within the next 3-5 years would be complicated and is not really something I’d consider. I’d like to be able to complete my PhD (or EdD for that matter) at a distance – and I’d like to look at some aspect of distance education, the use of new technologies, and faculty development. I also have developed a side interest in medical education – so if there is any cross section of distance education, new technologies, faculty development, and medical education that would be even more interesting – although the medical education aspect is not essential (I’m not an MD).

Today I came across Terry Anderson’s post on “Online Distance Education – Towards a Research Agenda“. My particular areas of interest are identified as:
- The Use of Technology in distance education
- The Cost and Economics of Distance Education (although I’d need to do a lot more reading in this area before I could study it).
- Professional development and faculty support
Actually, I find it interesting that the topics that most interest me all fall within the area categorization of “Meso-level research: Management, Organization, and Technology”.

So, I shall ask anyone reading my blog – any suggestions for Doctorate programs that might allow someone with special circumstances such as mine to transfer in? I’m not 100% certain that this is what I will want do when I’m done treatment, but I do want to explore the options so I know what is feasible / realistic. Thanks.
Tue July 15, 2014