BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: exercise

  • Not talking = not blogging

    I’m amused that over the last few days it has been extremely difficult for me to talk, and somehow that has resulted in me not blogging.

    I find myself wondering if it is because I cannot even talk to myself! But then, I usually write in my head.

    Truthfully, it is probably because I haven’t done much over the last few days but watch TV and sleep, so I don’t really have much to write about (or talk about).

    My mouth sores got bad enough for me to ask for stronger drugs.  I have been taking liquid morphine for the last couple of days – originally every 2-3 hours, but now I’ve backed off a bit. I slept through most of last night, which has gone a long way to helping me heal. Prior to that I was waking up hourly (or after morphine every 3-hours) with sharp mouth pain. The sore on the back of my mouth where the bottom of my tongue attaches is the worst. Simple things like eating, talking, even licking my lips are not possible – and the difficulty in clearing food from my mouth and brushing my teeth! So many everyday things we do with our mouths.

    But, it is getting better. I no longer feel like my tongue is too big for my mouth – it fits again. The roof of my mouth is still rough, but no longer feels like super scratchy sandpaper – more like the fine grained black sandpaper.

    I have a whole new empathy for those who have had severe side effects with chemo. I can appreciate so much more how people find exercise to be a challenge (having not done any since Tuesday).

    My excuse for not exercising has been an inability to hydrate enough. On Tuesday I rode my bike out to my eye doctor appointment, and I struggled with the heat and inability to suck water from my water bottle.  The food I had brought with me to help keep up my energy stung when I tried to eat it. In addition to pain from motion, I found that I could not eat anything that was the slightest bit acidic or salty. Fortunately, after the appointment Scott could pick me up afterwards and take me home.

    Today I’m going to go to support group, knowing that few people are apt to be there on the long weekend, and I cannot really talk. It will be nice (assuming it is even open) to see familiar faces and just be in the space with people.

    We had originally planned to go on a bit of a bike adventure on Sunday – taking the train to downtown San Francisco and riding towards home – however, that microadventure plan is now on hold. We may try it in a couple of weeks if the new chemo regime doesn’t take too much out of me (it is supposed to be easier, but the first couple of weeks might be difficult). Instead, tomorrow we will venture out to the coast for a walk on the beach. It has been a while since I’ve been out to see the ocean (rather than the Bay, which we see almost daily). I look forward to the smells and the sound of the rolling and crashing waves.

  • Feeling my nadir today

    For the last couple of rounds of AC, I’ve actually felt quite strong on my nadir day (day of lowest blood counts). Today, I’m tired.

    My biggest struggle today is mouth sores. On the weekend I started to develop mouth sores (the ones on the underside of the tongue are especially painful) and along with it thrush. I’ve now started treatment for the thrush, so my mouth isn’t as full of gunk, but boy do the sores ever hurt! I’m on a pretty much liquid diet, as solid foods get stuck under my tongue and in the back of my cheeks, and I cannot move my tongue well enough to clear it out. I also cannot easily open my mouth wide enough to do a decent job brushing my teeth (plus with low platelets, I need to be really careful with teeth brushing as my gums bleed).

    It all sounds rather awful, and feels that way too, but in the grand scheme of things is it more an annoyance that a real problem. I will need to run out to Costco later today (after the plumber comes to look at the toilets) to buy more ice cream. The coolness and non-acidity of ice cream actually relieves a lot of the pain in the mouth and ensure I get in some calories – however, they are not enough nor the right calories for exercise.

    I biked to an ophthalmologist appointment yesterday – but that proved to take too much out of me. Biking in the sun, without adequate hydration and an inability to suck on the water bottle (and pain when opening mouth wide enough to get the water bottle nub in my mouth) meant that I was exhausted by the time I arrived (about a 40 minute bike ride). So until I am able to eat solid food (even soft solid food) and hydrate adequately, biking is out. Today is officially an exercise rest day. Tomorrow I’m allowed to get back into the pool, so if I don’t have the energy to bike (cause I’m not eating the right foods today), I can at least do a gentle swim.

    I’m looking forward to the rebound!

  • #thisiswhatdepressionlookslike

    This post has been inspired by a mix of things, not the least of which is how I am feeling at the moment. With the recent passing of Robin Williams, my Facebook and Twitter feeds have been filled with tributes but also warnings about depression. One of the Unitarian Ministers on my Facebook feed (yes I have several Unitarian Minister friends) posted a challenge to share pictures for people who suffer (or have suffered) from depression, as it helps to show the faces of depression. So, I took this picture today while I was out on my bike ride. One of the reasons I ride is to fight depression, but the fight is becoming more difficult.

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    I feel the need to write more about depression. The latest news regarding Robin William’s death just crossed my social media stream – that he had early onset Parkinson’s makes it seem that much closer to home.

    Yesterday represented a transition (last night really) – from control to loss of control. I took the above picture in the middle of my ride. I cried for most of the first 30km. It wasn’t until that point that I finally found myself back in control. I wasn’t sure the ride was going to work this time!

    Fortunately, when I felt the early signs, I began to reach out, and will have my first appointment with the oncology-psychiatrist tomorrow. It seems that at about the same time I reached out (about two weeks ago), Stanford opened a new oncology-psychiatry clinic. I will be one of the first patients!

    This is not my first bout with depression. I suffered from depression for about two years (2003-2005). Within the span of a year I (1) was laid off from my career at Nortel, (2) got married, (3) bought a house, (4) started a consulting career, (5) started grad school. By spring 2003 things were looking pretty good in my life, and yet I had difficulty getting out of bed in the morning. I was sleeping in excess of 10 hours a day, and I had no motivation. I wasn’t sad, I wasn’t anemic, I just wasn’t motivated to do anything. For me, depression appeared as a lack of motivation rather than sadness.

    On my bike ride today, I reflected on what I had learned about my earlier depression. First of all, I know which drugs worked! But more, I know that what threw me off balance was uncertainty in my life. Losing my job was not a bad thing, but not knowing what I’d do next was a challenge. Relaunching a career wasn’t a bad thing either, but there was just too many of life’s big changes happening to me in too short a period of time. My brain couldn’t keep up.

    This time it is definitely about uncertainty, although my mom also pointed out the issue with ‘chemo-pause’ as a contributing factor. One of the side effects of the chemo drugs is a temporary an onset of menopause (young warriors call it ‘chemo-pause’). In addition to the whole uncertainty associated with having cancer, I’m also dealing with emotions that may be enhanced by ‘chemo-pause’.  I’m thankful that there are now people at Stanford that understand the combination of factors involved.

    For those reading this who are also in treatment Stanford, if you are having any concerns (even mild concerns) with anxiety or depression, I urge you to ask for a referral to the new clinic. They have been fighting for three years to get it established. I’m grateful that it came to be just in time for me. Referrals do take time, and medications also take time to be effective, so don’t wait until it is really bad before asking for help.

    There is no certainty with cancer. Treatment is physically tough and the long road after treatment is emotionally and mentally tough. Be assured that I am well enough to know to ask for help when I need it.

  • On my way back

    After the abyss that is day 3 and day 4 after chemo, I feel that I am coming back to life. It is a rather dramatic transition really. Swimming on day three I struggled to swim 7 laps (280m). Today, I thought I’d push myself to make at least 10 laps, but then something clicked – the fatigue let go – and I swam 20 laps (800m).

    So the real me is coming back to life. I’m still rather limited in what I can do. Blisters on my hands are re-emerging, and I have blisters on my feet that may limit walking – we’ll see how my feet feel in my new running shoes. Biking is out for a couple more days, as it contributes to the blisters – so swimming is my main exercise until that gets cut off, which by then I hope to be back on the bike and walking again.

    One more cycle of AC – there is light at the end of this tunnel.

  • So I did it, but I need your help

    So, I did it, I signed myself up for the Avon Walk. This is a fundraising event that involves walking 39.3 miles over two days. The first day you walk a marathon, and the second day you walk a half marathon. The walk takes place through the city streets – in my case, it will be through the streets of San Francisco. As this is a fundraising walk, I need your help. In order to participate I need to raise at least $1800. So, I’m asking for your help. My fundraising page is:  http://info.avonfoundation.org/goto/rjhogue. I may seem like a cliche statement, but every little bit helps.

    I really debated signing up for the walk. I don’t generally like these large fundraiser event type things – but I was motivated by several things. First, one of the ladies in one of my support groups spoke very highly of it. She said she found a lot of encouragement in the crowds that gathered to cheer them on. It as an emotional but very uplifting experience, and that takes on a whole new meaning when you are walking as a warrior/survivor.

    I looked into where the money went. I’m lucky to be located near Stanford, a center for excellence in breast cancer treatment. It is where a lot of the clinical trials happen. It is one of the few universities in the US that set the standards of treatment for the rest of the country. But I’ve also been lucky to be near Bay Area Women’s Cancer Connections (BCC), an organization that has provided me with a lot of support. There are lots of free resources that have been made available to me. I’m also very aware of a lot of women who are cancer poor. Women who have to make treatment decision based upon their finances. And I don’t even see the women who don’t get screening done or who have very limited access to healthcare. It is a real problem here – and so events like the Avon Walk providing funding for research, they also provide resources for women who could not otherwise afford them.

    The final reason I decided to do it (other than the cool opportunity to see San Francisco) was the timing of the walk itself. I’ve started to look beyond treatment – I’m making the move to look ahead in my life. The walk will come at a time when I should have completed the major treatment phases of breast cancer (chemo and surgery). There is some hope that after surgery I get declared “NED” (no evidence of disease). The treatment doesn’t stop there, as I’ll be on hormone blocking medications for 10-years – but I should be disease free. As such, the walk will mark a transition – from warrior to survivor – and that is something significant and should be celebrated.

    As I write this, it is day three of my third chemo cycle. I had a great visit with a friend today which did a good job of distracting me from how awful I feel on day 3. Last cycle I also felt awful on day 4, so I have a reiki appointment which will hopefully fill me with healing energy and get me through this cycle. I’m truly hoping that the cumulative effect doesn’t mean I feel awful on day 5! Only one more cycle of AC to go (yay) – and my oncologist promises that T will be better! Going out today gave me an excuse to dress up and try out the stylin’ new hat and earrings my mom sent! I am amused at how much I like to dress up when I go out now – that is so not like the old me.

    We are going camping on Saturday night. We have not been camping yet this summer – which is so unlike us. Having a temporary disability permit has been a life saver for me. It has meant that I can run errands even when my energy is low, but it also means we can go camping this weekend. The California State parks set aside certain sites that can only be used by someone with a placard. So even if all the other sites are full, no one else is permitted to use them. This meant that when I was looking for a site on Monday, there was one still available for Saturday. It is a real savior to be able to go camping at the last minute, as there was no way we could have planned in advance how I would be feeling. Honestly, I’m not 100% certain I’ll actually be up for it – but I figure, if nothing else I can spend an afternoon reading a book in my camp chair surrounded by ancient trees – sounds pretty peaceful to me!

     

  • Is it tired or it is fatigue?

    I find myself asking the question, am I tired? or am I fatigued? I used to think it was the same thing. I’m learning that it is not.

    The symptoms are similar if not the same. Heavy eyelids, yawning, lack of energy.

    When I’m tired, I can take a nap and I usually fall asleep quickly. When I’m fatigued, laying in bed results in restless lying around, and sleep does not come. Fatigue responds better to exercise than it does to sleep; however, overcoming the inertia of fatigue in order to get to the exercise is a challenge.

    For the most part, this chemo cycle has been easier on me than the first cycle. I knew what to expect and I knew when to take which medications, and I charted out which days to avoid certain activities. I managed the side effects a lot better. However, the one side effect that I felt more of throughout, was fatigue. At various times, I found myself weighted down with fatigue. I felt tired but napping was ineffective.

    Now that I appreciate the difference, I know what to do. This morning I was definitely feeling fatigue. Trying to go back to sleep didn’t help. Hopping in the pool and swimming 800m did. Feeling much more full of energy now – hopefully enough to tackle Costco and Safeway so the house is well stocked when nausea hits!

  • My bald head

    There are times when I find myself wanting to cover my head in something stylish – and I like looking good. There are times when I run out to take out the garbage and I cover my head so as not to scare or make uncomfortable anyone who I might happen to cross paths with in the corridors of the condo.

    Today, when I was out sailing, I mostly wore a buff and my Tilley hat.
    DCIM\100GOPRO

    I usually wear my Tilley hat sailing, so anyone who has seen me before would not notice any difference. There was a brief moment when I took my hat off for a picture – cause I really wanted a picture with the waves and my bald head – mostly for posterity. But I also wanted to feel the wind on my head. At this point, it was easier to put my buff and hat back on, as I needed my hands to hold onto the boat!

    DCIM\100GOPRO

    But, towards the end of the sail, when it was a little less windy and cold, I found myself wanting (craving) to talk off my hat so I could experience the feeling of the wind on my skull. I love the feel of the wind on my bare head. But I didn’t. I was afraid of how the people around me would react. I was not afraid of showing my bare head, but I didn’t want to make others feel uncomfortable.

    When in the car, I often strip off my head scarf. It is either too hot, and I want to cool down, or I’m on a slower road and I want to drive with the windows down. Again, that feeling of breeze on my bare skull is delightful. When I’m in the car, I’m not worried about how my baldness might make others feel (even when stopped at intersections). I’m conscious about it, but not worried about it.

    When I had a shaved head, I didn’t worry about it. I often went out without covering up. But now, my head is patchy. It is mostly bald, but still has some patchy bits of hair. Sometimes when I swim, I don’t worry about it and just go bare. Last time I swam, I wore my swim cap. I was OK with changing from my buff to my swim cap at the pool, and I even used the pool shower and exposed my naked head (but found myself hoping that when someone walked by that they didn’t look my way). But I didn’t walk to or from the pool with a bare head.

    So I’m of mixed feelings right now. There are times when I want to look fashionable that I am happy to have my head covered in a pretty scarf/buff/whatever. It is a part of the outfit and actually dresses up what I’m wearing. However, there are times when, I would rather not bother covering up. Although, from a practicality perspective, I do need to concern myself with sun protection. My bare head cannot go out in the sun for any length of time, but it certainly craves being exposed for short periods of time (and I do hate wearing a buff under my bike helmet, but I need the sun protection).

    So I wonder, how much should I worry about what other people might think? Do I worry about the discussions parents might need to have with their children after seeing me? Is that something that I should even care about?

     

  • Picturing a walk

    Yesterday we went for a 6km walk along the Guadeloupe trail which runs just behind our condo complex.

    For the first part of the walk, I took the lower path hoping to get better pictures of the birds.

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    Unfortunately, the grasses along the river grow so tall that I couldn’t actually see the river through the grass in most places. What I did notice was that sounds were more isolated, so I could hear the song birds a lot more. It was low tide, so the ‘river’ which is rather brackish at this point was mostly mud flats.

    I did catch a glimpse of the egret who appears to be rather timid. As I got close, he decided to fly up into a tree.

    While Scott and I were both on the lower path, he stayed up in the tree, posing for us.

    We did manage to catch him a little later down in the water.

    On the way back we walked along the upper path.

    And thought this sign was particularly well designed.

    The end 🙂

     

  • Bone-pain – a mixed blessing

    When I didn’t experience a lot of fatigue or any bone-pain yesterday, I felt it was a mixed blessing. I wondered if the reason I wasn’t feeling it was because I had successfully managed the side effects (although that doesn’t describe the lack of fatigue) or was it that the Neulasta shot that came via express scripts (mailed) wasn’t stored properly such that it was ineffective?

    This morning, when I started to feel the initial twinges of bone pain, I felt a bit of relief but also a bit of concern. The Neulasta is definitely working. This is a good thing. But everything seems to be running a day late (probably because of the later in the day infusion time). This means that my day early third infusion may feel like two days early infusion, and that would really suck. So, I’m crossing my fingers that the delayed onset was really just me managing the side effects better.

    In looking at my medications records, it appears I did not take my NSAID before bed last night. I highly recommend the Dosecast app (available on both Android and iOS) for tracking when you actually take medication. I can never remember what pill I took when, so every time I take something I just click the “take” button in Dosecast. I can then look up when I took what, and I can print out a 30-day summary for my doctors. So when my primary care doc asked how often I was taking the heartburn medication, I could just show that particular medication to him on my phone. Very handy.

    I’ve now taken my NSAID but cannot sit until it takes effect. I’m typing this from my husbands standing desk (handy that he has it!). I’m about to go out for a training walk with my iPod – which now has Warrior by Scandal loaded on it in addition to my regular mix of Bon Jovi and Bryan Adams. My walk may turn more into a moving dance than a walk!

    In other notes, I’m going bald and my eyebrows are thinning. People say “you still have your eyebrows” as it seems mostly that I am the only that notices the difference. They look manicured now, and I haven’t waxed them in years! Last night when I pulled on my sleeping t-shirt I felt all prickly on the neck. I discovered that the act of pulling the shirt over my head dislodged a bunch of the remaining head stubble and embedded in the shirt collar. I had to put a buff on my head (head scarf) before putting on a clean shirt, so that I didn’t end up with hair in my shirt collar again! What is interesting is that I do seem to have a layer of baby fuzz on my head. So the hair that is falling out is being replaced with baby fuzz hair. It looks like I have more bald patches than hair patches now but the fuzz means it doesn’t feel that way.

    Apply sunscreen to my head results in a hand full of little hairs!

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    I am reminded with each new experience to that I am approaching this chemo thing (and cancer thing) with a sense of curiosity, and that is what is keeping me sane. Now I’m off for a walk/dance 🙂

     

     

  • Revising my stretch goals

    When the oncologist told me not to wait to have surgery – that I should plan to have surgery 2-4 week after chemo. His words were “don’t waste the chemo by waiting”, I had to make a choice – triathlon after chemo or Hawaii. It was a pretty easy choice. The triathlon was proving to be challenging, as I wasn’t finding any newbie friendly events. So, I revised my plan.

    One of the ladies at one of my support groups had walked in the Avon Walk for Breast Cancer. She was very inspired by the experience. I have known others who have done similar walk’s in Ottawa (known as the Weekend to End Women’s Cancers). I wasn’t so sure about the whole idea. Does the money go someplace useful? In looking into here, the answer is actually yes. Without socialized medicine, much of the money goes to provide programs for women who otherwise would not afford screening or whose treatment options would be limited by their finances rather than their choice. I am lucky, in that when I was diagnosed, we were in a good financial position, but also we have decent medical insurance. As much as we fight occasionally to get prescriptions covered, I’ve never had to make a treatment decision based upon finances. I am very lucky, and many other women are not. So, I’ve been seriously considering the Avon Walk … so much so that I will probably sign up this weekend! I’m just waiting for some answers to questions relating to international donations.

    The next Avon Walk in San Francisco is July 11-12, 2015. The other coolness factor about this is just walking around San Francisco. The walk will necessary involve crossing the Golden Gate bridge at least once. Last year’s walk involved walking through Sausalito – which always reminds me of Starfleet Academy as well as walking through several interesting areas of San Francisco! For me, this event will come at a time of transition. I will be transitioning from ‘in-treatment’ to ‘survivorship’. The walk provides a great symbolic activity, and I can visualize myself walking through the finish line as if it were a bridging ceremony marking the end of treatment and all the healing from the trauma associated with treatment, to begin my life as a breast cancer survivor.

    To help me start training for the walk, I’ve set a new post-chemo stretch goal of being able to do the hike down from the summit of Haleakalā on Maui. The hiking trail is 18.1km. That is double the furthest distance I’ve ever walked. It also involves altitude, so I will need to get in some altitude training.

    Screen Shot 2014-08-01 at 21.58.21To help with the altitude training, we have booked our anniversary weekend (September 28) trip up to Yosemite National Park. Yosemite has some nice high altitude hiking trails, so I should be able to test out my abilities for hiking at altitude that weekend. It should also be a lot nicer weather in the fall – as Yosemite in the summer is darn hot! We may do an additional Yosemite trip (or Tahoe) to celebrate the end of chemo (November 17) with one more weekend of higher altitude hikes before we go to Hawaii. We shall see. It seems like a lot of time away, but awesome healing time, spent largely in the wilderness, so definitely worth it 🙂

    So there you go, my new stretch goals. Right now, I feel that they are very achievable!

     

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