Tag: exercise

My ‘cancerversary’

I have found myself wondering, what day would I recognize as my ‘cancerversary’. This is typically the day you find out you have cancer. It becomes a significant anniversary in your life after cancer – as does the first day you are told you are ‘cancer free’.

Rather than choosing the day the radiologist confirmed cancer, I am choosing the day that I noticed something was different. That day, Scott and I went on a 27km bike ride around the Alviso Slough on the southern tip of San Francisco Bay (just north of where we live now).

I took several nice pictures, including these.

When I got home, I hopped in the shower as usual. Everything seemed rather normal until I went to dry off. The discharge from my left nipple was green (it was not abnormal for me to have clear discharge). I’m not sure if I noticed the change in shape then (a little concave bit above the nipple) but I did notice that when I laid down that there was a harder spot – but to me it felt more like a contracted muscle. I thought maybe I had pulled something.

In the following days, I Google’d green discharge to see that it was no necessarily abnormal. Red is definitely a bad sign, but green wasn’t. The following Monday, June 9th, I decided to call my family doctor – cause well – it was better to have peace of mind. I even said “I think I’m being neurotic and it is nothing, but thought I’d get it checked”. The look on her face when she checked was pretty telling. It needed to be checked because there was definitely ‘something’ there.

Anyways, I’m derailing. The point is, I first noticed the change on June 1st. So, although the change was confirmed by the radiologist on June 12 (with 98% certainty, they couldn’t be 100% certain until the pathology was back the following Monday), I think I shall indicate my ‘cancerversary’ as June 1st. It will be interesting to see what my reflections reveal on that date next year!

Fri August 1, 2014
Early morning walks

One advantage to being wide awake at 5am is the ability to go out for a walk before the sun rises. Early morning walks mean I don’t need to cover my head or arms – I can walk and enjoy the feel of the light breeze against my skin.

This morning, I walked with Scott along my favourite part of the Guadeloupe trail, which runs right behind our apartment. About 1.5 km from our apartment, there is a pair of lovely white birds (some kind of crane, I believe they are egrets). They must be nesting in the area, as I’ve seen them almost every time I ride or walk along the path. I like to walk or ride to visit ‘my birds’ in the morning. There is also another large bird that we were not able to identify – perhaps a great blue heron. It’s colours are such that it would be very difficult to get a picture, as it almost blends into the background. I’ve seen it fly along the river on one of my bike rides. This morning, it was nice to share the experience with Scott (I’m usually biking or walking alone).

With the overcast sky and cool breeze I found myself enjoying the wind on my arms. I’d hold my arms up in the air, reminding me of cormorants by the sea holding out their wings to warm them up after a deep dive. At that hour, we had the path mostly to ourselves. There were a few joggers that passed us, smiling, or nodding. No one seem to notice (or care) that I was lacking hair!

Sun July 27, 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
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
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
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
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
So a little more detail …

My post this morning was a little rushed, so I missed a few interesting details. The big question for everyone was why is this happening on my hands and not anywhere else. Most people who have this complication see it on hands and feet or hands/feet/mouth. Several doctors were looking for other locations for the sores, and not seeing any.

It was the on-call dermatologist (happens to specialize in chemo related derm complications so I picked a good night to be in the ER with this issue) that made a comment about ‘motor biking’, that had me saying – on Friday morning I went for a nice long (1hr+) bike ride on my folding bike. The blisters started about two hours after the bike ride. Of my three bikes, this is the one with mountain-bike style handle bars. And that is when the ah-ha moment came. The bumping associated with riding (I do wear gloves but still) didn’t align well with day chemo+4. There is a range in the chemo cycle where I’m more susceptible to this type of thing happening, and any trauma can set it off. The places on my hands where the blisters are align with sweat glands – and trauma to that area when my body is expelling chemo drugs can cause this toxicity effect (at least that is what I currently understand).

She asked if I had been warned about this complication – not that I can think of. That being said, many of the warning have been overly cautious and lacking details. Telling me not to ride or swim is useless, but telling me that I shouldn’t ride an upright bike on days 4-8 is a lot more useful (I now know this is when the chemo is leaving your system, so toxicity effects are most likely) and telling me I shouldn’t swim days 8-12 is also useful (this is when blood counts are low). The overly cautious recommendations would have me sitting on the couch watching TV the entire time – which is actually contra-indicated – exercise has been shown to improve chemo effectiveness as well as decrease side effects. So, I am looking forward to a discussion with the dermatologist on Tuesday where we can actually go through the best times and worst times for specific activities in order to reduce the likelihood of a re-occurrence in the next cycle. I’m also kinda happy that I’m presenting an interesting case for at least one of the doctors at Stanford 😉

Sun July 13, 2014