Tag: exercise

More extreme reactions

I’m discovering that my allergic reactions to things are heighten now that I’m on chemo. I have this odd reaction to kale. When I eat it (or chard) within 24hrs I get little blisters on my hands, they start small and painful and over a day grow into blisters about 5mm across. Once they reach there maximum size (usually within 36 hrs) the pain stops and within a day or two they are gone. If I accidentally have kale in my salad or some other food item, then I usually get a couple of blisters the next day.

Last night my hands began to blister, and not just one or two blisters, but 9 on the left hand and and least 4 on the right hand. Ouch to the point that they wake me up because I cannot spread my fingers nor clench my hands without pain. I can only guess that some of the random lettuce mixes (seeds and plants) that I picked up to grow in my box garden contain strains for kale. I am reminded that I must be extra diligent with foods that cause my body to react poorly (absolutely no tomato). My bodies negative reactions to them seem to be much more extreme as my immune system weakens a little more as the chemo starts to set it.

In theory my weakest time should be around days 8-10 (or Tuesday – Friday next week). This low point is known as ‘nadir‘. In many people it aligns with the days where they are more fatigued. If this is the case for me, I will be extra happy to have my mother here to help ensure that I’m eating enough and getting out for at least a little exercise (although swimming which sounds perfect, isn’t advised when you have higher risk of infection).

Sat July 12, 2014
Post Chemo day 3

Today was a mixed day. It began badly – actually it was more that last night ended badly. I was feeling pain in a way that I had never felt before. It is difficult to describe. They sometimes call it bone pain, but I would not call it that at all. It was like all my muscles (mostly in my abdomen head and neck hurt. My throat hurt – but it was a sore throat – rather it was the muscles around my throat hurt when I swallowed. Yuck.

I was bummed that I couldn’t get the marijuana (MJ) yesterday. You see, I could get a license, but the dispensary we want to use (one that actually measures and labels the dosage of all items it sells) requires California ID and I don’t have that yet. They would not accept any other proof of living in California. So, I have on my to do list, when I’m feeling up to is, a trip to the DMV to wait in line forever to get a California ID. I tried scheduling an appointment, but all appointments are in August! Unfortunately, I wasn’t feeling up for it today. We do have an alternative. My husband can get a caregiver card, and since he has a California Drivers license, he will be permitted to go to the dispensary and buy stuff. Dispensary isn’t really the right word – it is actually a collective – and they include education on what exactly you are getting and various recommendations. For the side effects of chemo, the drugs you are looking for aren’t actually the THC (which causes the high) rather it is another drug. I took this picture in the doctors office. I’m actually looking forward to being permitted into the dispensary so that I can actually learn more about it … in the mean time, I’d be happy with a few truffles that might help me sleep without being drugged up prescription pharmaceuticals.

As the day progressed, I began to feel better. I think I really just needed to talk to a friend or two. I spend a couple of hours on Facetime and Skype talking to friends and that definitely helped ease the pains. I think also the Sudafed (pseudoephedrine HCl) helped – glad I had some – as far as I know you cannot get it in the US without other stuff like Tylenol mixed it. *** You can in Canada. It mades me a little spacey but it cleared up the fogginess in my head. I also walked over to Safeway to pick up Claritin (and took some immediately). They say that Claritin is the best thing to counteract the pains associated with the neulasta. We had asked about whether Reactin would work and were told it would. I can sadly report, that it did NOT. So adequately drugged up to counteract side effects, I’m feeling OK now. I check my temperature regularly to ensure I don’t have a fever.

The one thing I felt this morning is that I really wanted a reiki treatment. This was interesting. I’ve had reiki a couple times before and didn’t really feel like I got much for it, but today, I craved it. I just wanted to feel that healing touch. I couldn’t get an appointment until tomorrow, but now I know. Next cycle, I will pre-book an appointment for the day after neulasta (or maybe even two appointments) just to help it clear my system.

Instead, I went for an afternoon swim with my clothes on. As I’m sun sensitive, swimming in an outdoor pool in bright sunlight is a bad idea. So, with my clothes and swimcap on, I’m almost completely covered. It was magical. And the feel of my wet clothes against my skin had the effect that I was hoping for in the reiki treatment I couldn’t get. With each stroke across the pool my shirt and capris gently massaged my skin in the slightly salty swimming pool water. It was magical – and exactly what I needed. I found myself floating and kicking in snorkeling position, head down blowing bubbles. Next time, I hope to have the new Go Pro setup, and then I can take videos of the patterns on the bottom of the pool as I swim around. Anyways, you get my point – it was the magic that I needed for a day that didn’t begin too well.

I think more than anything, with the new pains in my body, that reality is starting to set in. I am powerless against some of these pains, and that is difficult to accept. It is also that the sensations are new – so I don’t know how to react to them – I don’t know what I can do to ease the pains – and popping yet another pill isn’t exactly what I want to be doing – but yes, to those who have asked, I am taking my anti-nausea meds pretty strictly.

My outlook at the end of today is better. I do hope I wake up tomorrow feeling a little more energy – need to get the apartment ready for my mom to arrive on Saturday 🙂

*** Although this is what I believed at the time, it is not true. The medication is available from the pharmacist, you just need to ask and show ID.

Thu July 10, 2014
The pill app and post chemo day 2

So being the mobile geek that I am, I figured there had to be an app that would be useful for tracking when I am taking various medication as they all have very different durations, and when you add in all the non-prescription medications and chemo brain, it becomes impossible to track in ones head.

The app that I’ve found to be useful is called Dosecast. It is listed as free but is pretty useless without the $3.99 in app purchase to premium. I can add any medication I want to it. I don’t have to have reminders – since much of what I take is as-needed I don’t want to be burdened with reminders. With the premium I can get a summary of what I have taken and I can email that summary and print it out for my doctor. Scott has some grand plans to do some kind of graphical analysis for my doctors, but I’m not holding my breath.

We are both rather scattered at the moment – after both having very busy days. After my morning swim, I had a few online meetings and ran a bunch of errands, and had a couple of doctors appointments. The first was to get my California Marijuana card – which doesn’t do much for me until I get a California ID (ugh – this involves lines at the DMV, so I may also do the written portion of my drivers license at the same time) – the second was the follow up with the genetic counsellor who I am happy to report confirmed that I do not carry the known breast cancer genes (BRAC1, BRAC2, CDH1, PTEN, STK11, or TP53). This is very good news.

To add to our crazy day, they were testing the fire alarms from 4 – 8 pm, which was driving us both crazy. Scott has more conference calls tonight, and I shall soon sleep. I’m starting to feel the effects of either the chemo or the neulasta – so general achiness and one-by-one each of my muscles are starting to hurt like I’ve over-exercised them (started in the abs and has now moved to shoulders and neck – I think this is because I injected the neulasta in the stomach). But, no fever, so that is good. Sleep will likely be the best medicine for me this evening. I do hope to have energy again in the morning, just need to remember to take it easy in the afternoon, and remember to eat!

Thu July 10, 2014
Day 1 – I had to give myself permission to nap

In all my pushes to make sure I’m getting enough exercise, I had lost sight of my need for sleep – or a least a little more sleep than I usually get. I got quite a bit of sleep last night, but by 2pm I was knackered. I had to realize that I should stop pushing myself and just take a nap … so two hours later I woke up feeling refreshed.

We managed to get all the crazy stuff sorted for the nuelasta shot, and I now have it sitting in my fridge. We will do it when Scott gets home – as I don’t want to be alone. I’ve taken the recommended allergy meds (in my case Reactin) and an NSAID – which were both recommended by my oncologist.

I am finding that the advice via different people is very variable. Nurses tend to provide advice on the extreme side of things (absolutely no alcohol, no swimming, no biking, etc). They tend to provide advice based upon the worst case scenario, but also discount the mental health benefits in the treatment. The need to exercises (bike and swim) are important to my mental health, which is just as important in my healing. The Oncologist was good – he explained the chemo cycle – and said it was OK to swim the first week, but as my counts get low to stop swimming until the counts return. He said it was OK to have the occasional glass of wine, but don’t get fall down drunk cause they are worried about low platelet leading to excessive bleeding. So, there is a period in the middle when infection is of greater concern then otherwise, and that is when I need to be careful – I don’t need to be overly careful of the time, especially at the cost of my mental health.

In other news, one of the packages I received yesterday was my new RoadID. These are shoe tags that say who I am and provide emergency contact information. I added to these that I’m being treated at the Stanford Cancer Center, which would provide EMS folks with enough information to get my medical information in the case of emergency. So, when I’m out biking, I now have a road ID tag for each pair of my shoes. They sent me an extra one because of a mixup in the order, so now I need to decide where to put it. Might add attach it to my purse.

I’m not sure yet if the chemo smell is still something that I’m experiencing from the inside or the outside. Scott doesn’t have a strong nose for scents so he doesn’t really notice. I decided to wash the bedsheets and anything I wore yesterday, to see if the smell clears. I know I’m not at the 48 hour mark yet, so I could still be excreting the smells, but i figured washing the sheets couldn’t hurt.

I do notice the flavour of things having changed and this can be directly related to the smell. I sent Scott out for a bottle of ginger ale (Canada Dry to be specific as that is the specific brand that I like). Turns out it tastes nothing like ginger ale – almost revolting actually … hopefully I’ll get those taste buds back in a few days!

I think the nausea is starting to abate a bit. I’m controlling it, but it isn’t pleasant. Yesterday, I certainly felt the crash after the steroids from the pre-chemo treatment wore off. By about 5pm I was dragging and feeling flu-y. I’m going to have to learn that when I feel that way, I should just nap for a couple of hours (assuming my temperature is OK) it often coincides with more nausea which is also helped by sleeping, as it may be the new way my body has of telling me it’s tired.

Wed July 9, 2014
I’m ready
I am so ready to make the transition from someone with breast cancer to someone fighting breast cancer. Tomorrow morning, bright and early, I begin chemotherapy – assuming the heart ultrasound and blood tests say I’m healthy. Ironic (in an Alanis Morissette kinda way), the idea of being in ‘excellent health’ and having cancer at the same time.

I’ve got everything laid out for my ‘cancer’ bag – that is the bag I bring with me when I go up to Stanford for the day. I received it from BC Connections, a local Breast Cancer support organizations. It has proven to be very handy (both the bag and the organization itself, as this is where I go to support group on Saturday afternoons). I have even chosen my clothing for the day. I bought a new t-shirt that has a low neck line so that my port is easily accessible. I’ve included:
- A nice warm blanket/wrap that I received from the Three Willows church where my in-laws go (thank-you).
- A scarf that I received from my friend Maha in Egypt (thank-you).
- Care squares that came from a family friend (thank-you).
- A teddy bear that Scott brought me when I was in the hospital for surgery before we were married (with the Canadian connection Hudson Bay sweater).
- Some snacks and electrolyte mixes to add to my water bottle.
- My cancer treatment binder, which includes a bunch a cards and the caring card I received from the Ottawa First Unitarian Congregation (thank-you), the card my mom sent with a hope rock on it, and various post cards sent from distant friends (thank-you).
- Headphones, so I can watch TV or listen to music or podcasts. I have a collection of Vinyl Cafe Stories and Under the Influence podcasts preloaded on my iPhone.
I hope I’m not forgetting anything. I will also bring both my laptop, my iPad, and iPhone. I have no idea what I’m going to feel like doing during chemo. Scott will be there to help lug my stuff – bringing both the laptop and iPad seems a little redundant, but if I am in the mood for any serious writing (beyond blogging), my laptop has scrivener on it. Plus my laptop let’s me watch TV shows from Canadian networks, which I cannot do on my iPad.

I’d also like to thank John and especially Alison for the lovely quilt they sent. BC Connections had quilts for anyone going through chemo but I chose not to take one, as I see so many other women that need it more than I do. The following Monday, I received a lovely quilt from Alison and John in the mail. It has turned out to be perfect for our bed, as our down duvet was too warm for this time of year, but going with a just a duvet cover wasn’t warm enough – we were having trouble finding just the right balance, and the quilt is proving to be just that.

Everything that I’ve read so far about chemo side effects says that it varies by the person. I’ll either be tired for the first few days or overly energetic for the first few days and then tired towards the end of the cycle. If you know me, you know that I like to plan things. This whole uncertainty over how I will react is driving me crazy. I just need to know if I’ll be able to get some work done for a few days here and there or not.

Since diagnosis, my life has been pretty focused around improving my health (lots of long bike rides and long walks); enjoying myself (sailing, going to Yosemite for a couple of days; various medical tests, scans and appointments; and learning a whole lot about breast cancer in general, and specifically about the treatment options for the type of cancer that I have. I have put all my contract work on hold (fortunately, that was possible). I’m now starting to go stir crazy, and hope to get back to some of that work – however, I just don’t know how I will react to chemo, so I’m afraid to jump into anything right now. So the wait game continues … today I wait … I’m going to go for a swim, go out to the market (now that my stomach is sorted, we need some food in the house – although chemo may change that too), and maybe even go for a bike ride.
Sun July 6, 2014
A pre-treatment trip

One of the bits of advice I received was to try and get away before you start treatment. Both Scott and I needed a couple of days to enjoy ourselves and enjoy nature. Since we already had plans to head up to Yosemite, we decide that we would modify our plans slightly and still go up. We left early on Tuesday morning and spent the night at the historic Wawona Hotel. This allowed us to spend two days hiking and biking around Yosemite.

On the drive up, we stopped briefly at the Don Pedro Reservoir. It reminded me very much of the Dead Sea from our Going East adventure. I’m finding that a lot of things are reminding me of various aspects of our Going East adventure.

My favourite selfie of the trip. The giant sequoia in the background had branches that were 7 feet thick – thicker than any non-sequoia tree in the park. It was amazing to see. I was also struck but how different the sequoias are from the giant redwoods in Big Basin.

We took a lot of photos, so I’ve put them in a gallery for anyone interested in seeing them.

We now have a few days to prep the apartment, go sailing, and biking before chemo starts on Monday. I’m feeling ready for it now – much more ready than I was even a few days ago.

Thu July 3, 2014
Nature has more beauty

Someone in one of my networks commented that after diagnosis, nature has more beauty. That suddenly you are more aware of the beauty that surrounds you. I’ve definitely noticed that when I go out riding or walking. I’m finding the bike path behind our place particularly beautiful these days.

Today, rather than riding (it was a hot day here), we waited until it started to cool off and went for a nice long walk (dug out the pedometer – 7500 steps). When we ride up on the path we noticed a natural area between the path and the street. Today we walked through that area. Many of the plants are labelled and there are several information plaques throughout. Apparently, it is the last “forest” area in Santa Clara. Santa Clara is bordered by the San Francisco Bay in the north and cities on all other sides (Milpitas, San Jose, Sunnyvale, Cupertino, Campbell, etc).

We came across a grove of old eucalyptus trees. In this photo you can see the different phases of their life cycle – shedding layers of old bark to allow the new growth. Every time I see this I think, that is soon to be me, shedding my hair, nails, and other fast growing body parts (and tumors), to allow for new healthy growth. I am very curious what colour my new hair will be!

Walking back along the path, with heightened senses I noticed a family of snails on the shrubs that bordered the path. After noticing the first bunch, we realized that there were families of snails on the shrubs all along the path. We have walked this path several times and never noticed them before. Of course, my heightened senses might also be attributable to my new glasses, that let me actually see clearly at that distance – but still – I’m sure there is also an aspect of the cancer that I can attribute to this perception.

Tue July 1, 2014
T-shirts

When I was young I remember a T-shirt my mother used to wear that said “Don’t stare, grow your own” … A friend emailed me about a friend going through chemo who had a T-shirt “Like breasts? You can have mine, they are killing me!” Morbid but funny.

I find myself wanting a new jersey for biking. One that says something like “I bike to survive … ” or something like that … cause really, I bike to stay sane, and when I start going through chemo and doing crazy things like trying to bike Mount Hamilton during chemo (cause I wanna), then I need all the support from passing cyclists I can get!

I should also make a shout-out to a friend from our Going East tour – Jim is a real inspiration for me. When he was diagnosed as HIV positive back in the 80s (when so little was known about HIV/AIDS) he hopped on his bicycle and went on tour. He attributed his riding to his survival. Every time I get on my bike to ride now, I am reminded of our brief visit with him.

Sun June 29, 2014
Significance of dates and getting ready for chemo

It is funny how special dates have meaning – and how we know what dates are good dates and which are not. I wanted to strongly avoid starting chemo on July 1st, as I did not want every Canada Day to be a reminder.

Instead, the date aligns with a date that already has meaning for me. July 7 is my father’s birthday. On July 7, 2008 Scott and I left our house and hopped on our bikes to begin our 16-month trip around the world (http://goingeast.ca/blog/2008/07/07/we-left-home-finally/).

On July 7, 2014 I start chemo. I shall also start writing the going east book (I had done a little writing for NaNoWriMo the year before I started my PhD, but haven’t picked it up since). When I thought I might have cancer, the only real regret I had in life was that I had not yet written the Going East book. So, I shall use my chemo start date as the opportunity to start writing the book. I’ll bring my laptop with me to treatment, and see if I can use at least some of that time for writing.

We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care.

Tomorrow I have my port put in. They use what is called twilight sedation. It is the same type of sedation that they use for cataract surgery. It means I will be awake but not completely present or aware of everything. In theory it will heal within a couple of days. Hope that I can hop in the pool within a week, as I suspect that swimming may be one of my better post-chemo options (easier on the joints).

I’ve also asked a friend (or two or three) to be my exercise accountability buddies throughout the chemo process (I could use one or two more volunteers). In the PhD process some people use writing accountability buddies to help them stay motivated to get through writing their proposal or dissertation. It occurred to me while biking today that I could use an exercise accountability buddy – someone to hassle me to get off the couch on those days when I just don’t feel like it (that is an email or a Facebook note asking what exercise I’ve done each day). I don’t need to do a lot of exercise (I don’t want to overdo), but they recommend trying to keep to the same level of exercise throughout chemo (but with more rest time). Since I mostly bike 1.5-3 hours per day (4-5 times per week), that might be a bit too much to maintain all the time, but it would be nice it I could at least make sure I’m doing something every day that isn’t a chemo or procedure day.

I experienced anger for the first time today. When I was biking, I found myself angry that the treatment for breast cancer is to cut it off. How archaic is it that the treatment for disease is amputation. I’m expecting that either tomorrow with the installation of the port, or July 7th with the first chemo treatment, the whole ‘I have cancer’ thing will sink in and I’ll start to realize what this all means. Right now, I’m just taking things one procedure at a time. Trying to make sure we have everything organized and in place for the time ‘when I get sick’, cause I don’t feel sick now.

Chemo calendar:
July 7 – AC
July 21 – AC
Aug 4 – AC
Aug 18 – AC
Sep 1 through Nov 17 – weekly T

Thu June 26, 2014
‘Why me?’ versus ‘it is what it is’

I hear others say things like ‘why me?’ and I’m somewhat surprised that I have yet to have that feeling. Perhaps it is a bit of denial, but also I wonder if it is related to my outlook on life. I’m not a theist (I don’t believe in a god). I see the world as some form of random chance. I do believe some things happen for a reason. I believe that my past has prepared me for the challenges the lie ahead.

I remember lying in bed chatting with my husband about the possibility of cancer – before it was diagnosed – and saying ‘it is what it is’ – we will deal with it. There has yet to be the ‘why me’ feeling. Perhaps by not believing in a god, I don’t have anyone to ask the question to?

Now I’m not an anti-spiritual person. I’m an Unitarian Universalist. I find peace in nature, so today we spent some time communing with nature. We went for a walk in the Redwoods up at Big Basin Redwoods State park. We walked for 9km – according to my Runkeeper app, that’s a record for me. Big Basin Redwoods is perhaps one of my favourite places. The trees are literally 1000s of years old. There is a peace when you are walking and touching these ancient trees – some with battle scares from fires long past. They are survivors.

We stopped for about half an hour to sit an a bridge over a dribbling creek. We noticed these water bugs that created the most fascinating shadows on the bottom – like moving black dots. Scott has some theory about their feet acting as magnifying glasses, causing there to be no lighting center and a glow outside. You can see it in the center of the picture below. It is amazing what you see when you slow down for a few minutes and just be. Quite fascinating.

Today was a good day.

Mon June 23, 2014