BC Becky

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

Category: chemo

  • One more chemo day done!

    Today was a busy day up at Stanford. I had an oncology appointment, chemo infusion, and then a workshop on make-up (sponsored by Look good feel better). I’ll talk about the first two here, and the latter in a separate blog post.

    The good news from the oncology appointment is that the thing my oncologist felt in the right breast last time isn’t there anymore. So now, both of my breasts feel like ‘normal healthy breasts’ rather than breasts with tumors in them. This doesn’t mean that all the cancer is gone (they cannot tell that until they remove the breasts and do pathology on the breast tissue), but it does mean that the chemo has significantly reduced the size and texture of the tumors. In short, the chemo is working.

    We decided to reduce the amount of steroid I’m taking. My oncologist thinks that several of the side effects (including the chemo brain) are worse or caused by the change in levels of steroid in my system – so the side effects happen when the steroid wears off. If there is less steroid to begin with, then the change will be less and therefore the side effect less. It is an interesting argument (and not at all intuitive). So now I’m taking less of the steroid and taking it in pill form rather than IV (it means the infusion actually takes longer as I need to wait 30-minutes after the premeds, which I didn’t when all the premeds were IV). I think it is actually the same dose of steroid that I took for the first three rounds of AC, and I tolerated that very well. I’m crossing my fingers that this makes the chemo brain fogginess go away.

    My oncologist also looked at the neuropathy (and did some tests). So far it is pretty minor, but it is starting to effect my balance. I need to start being more careful about biking, but I am still OK. I don’t think it is bad enough to stop biking with my current bikes yet. If it gets worse and for post-surgery, I’m looking into borrowing a recumbent trike, so I don’t need to worry about balance issues, but also the trike format with underseat steering is easier to get into and out of and doesn’t require me to put any weight on my arms for riding post-surgery. If the neuropathy gets too bad, then we stop the chemo and move onto surgery. I don’t really want to go that route, as it would ruin all the plans I have in place for my visit to Canada for American Thanksgiving and Hawaii for my pre-surgery memorial celebration.

    On the infusion front, things were pretty routine. We’ve pretty much got things down now – and today there were no delays in the ITA (infusion treatment area), so things moved along pretty quickly. Since this regime doesn’t make me sick, I can actually get some reading / writing done while in the ITA – although we often have visitors which also provide a great distraction and helps the time to pass quickly.

    So far, I’m hopeful for a stronger cycle – so much so that when I got home today I went for a swim. I’m not as strong as I was at the end of the third round of AC, but that’ll take time to come back. I swam 800m, which is a good start :-). Over the next few weeks I’ll also need to concentrate on doing longer walks – in preparation for our hikes in Yosemite for our anniversary and Mount Tam on October 11 (friendly reminder – you can sponsor us on the links below – every little bit counts – consider donating $7-one dollar for each mile hiked, $12-one dollar for T-Chemo treatment, or $20-one dollar for each week in chemo, or if you really want to sponsor us, you can buy a prayer flag for $100).  Thanks.

    To support Scott’s hike: http://prevention.breastcancerfund.org/goto/scottd
    To support Becky’s hike: http://prevention.breastcancerfund.org/goto/rhogue

  • Breast cancer prevention

    It is with mixed feelings that I read about breast cancer prevention. It is not that I want anyone to get breast cancer, I would not wish that on anyone. It is just that when I read about prevention, I enter that world of regret. I start running through the if onlys…

    …if only I had thrown out the water bottles with BPA sooner
    …if only I ate less red meat
    …if only I ate less sugar

    In general, I’m very good at not regretting the past. There is nothing I can do about it now, so no point in dwelling on it right?

    But still, when I hear of a charity that focuses on breast cancer prevention, I’m filled with both regret and doubt (can we really prevent breast cancer?).

    One charity that works to help prevent breast cancer by providing public advocacy and education campaigns based upon scientific evidence (not personal opinion – there are way too many personal anecdotes about what causes cancer!) is the Breast Cancer Fund.

    On October 11 (Canadian Thanksgiving Weekend), Scott and I will be doing a day hike that is a fundraiser for the Breast Cancer Fund. It is a good chance for us to meet some new people (we’ve joined a team captained by a friend-of-a-friend) while going on a hike up Mount Tam in Marin County (just north of San Francisco). It is an area that we haven’t yet explored, so that too should be fun. Mostly, it is a great excuse to get out, and help me get motivated to train for my walk down Mount Haleakalā in December. As this is a fundraiser walk, we could use a little help with fundraising …

    To support Scott’s hike: http://prevention.breastcancerfund.org/goto/scottd

    To support Becky’s hike: http://prevention.breastcancerfund.org/goto/rhogue

  • Food Angst … never surrender

    For much of my adult life, my diet has been about control. I can choose to control what I eat, and as a control freak that is important. I’ve tried several different diets to no avail. Mostly, I’ve learned that my body doesn’t like some foods and it likes others. I’m lactose intolerant but my body is happier when I eat dairy – so I try to stick to dairy that my body likes, perhaps with the exception of ice cream. I may eat a little more ice-cream than I should, but at least it is organic “healthy” ice cream. That’s got to count for something.

    I went through a phase where I didn’t eat gluten. That didn’t go over well. My body likes wheat. I’m allergic to alternatives (quinoa and spelt).

    I’ve learned to listen to my body. Certain foods cause it grief (e.g. tomatoes cause eczema to act up, peppers and walnuts cause heartburn), so I avoid them. Other foods I enjoy.

    Going through chemo has meant that some rules had to be applied to what I eat – e.g no sushi or cold cuts for risk of listeria – but otherwise, all bets were off. I was given free reign to eat whatever I wanted, in part because there were days that I just needed calories. And there is that trust that, since I’m considered “healthy” for a cancer patient, that my diet and exercise regime are already good.

    However, at support group the question comes up “how has your diet changed as a result of cancer?” There is often a discussion about the link between cancer and sugar. I’ve done those diets too BTW – I went totally off sugar and lost a lot of weight but also lost energy. I went totally off sugar substitutes, not wanting my diet to be full of chemicals. I now generally avoid refined sugars, but I am guilty of eating pasta and white bread but I avoid potatoes. I find that too much of diets are fads – and little is truly known about what actually works or doesn’t work. I question whether there is such a thing as a “cancer diet”. Sure, people who used to eat a lot of fast food and junk, stop eating fast food and junk, they do better – but does that mean that sugar is the cause? An the article that crossed my stream today about the link between soy protein and cancer. This particularly annoys me, as it treats all soy as if were one thing. So the highly processed soy protein isolate used in the study is being made equivalent to the whole soy bean (edemame). When I asked the cancer nutritionist about soy, her comment was that whole soy such as edemame and tofu were good, but soy protein isolate which is often used in supplements (and check your granola bars and breakfast cereals) is a bad thing. So, when I read that article, it feels more like fear mongering about all soy, when in fact, some soy might actually be good for you. Note that the asian diet that is mentioned, which is typically a low cancer diet, involves a lot of whole soy products rather than highly processed derivatives.

    Before cancer, I ate a pretty healthy balanced diet, with mostly organic fruits and vegetables and definitely organic meats. Frankly, there are so many variables at play when it comes to diet – I’m just not convinced that whether or not I choose to have a little more ice cream or a brownie will have any affect on my overall health. I just hate being subjected to the guilt around my diet. I hate questioning and feeling guilty because my body is craving red meat, so I choose to have a steak for dinner (buffalo, not beef – so hormone free, grass-fed).

    I don’t want cancer to dictate what I eat. Having cancer means I have lost control of a lot what my body does. I have lost control over how I physically feel, and I’ve completely lost control over my schedule (as much as I try to manage it), and if I could only gain control over my red blood cell production! There are too many areas of my life where I have lost control. I’m not willing to give up control over what I choose to eat. Now, there are days when I don’t really have much choice – queasiness or mouth sores have severely limited what I could eat. I just hate that “cancer diets” propose to make me feel guilty for eating food that I want to eat!

    I’ve decide I have a new theme song when it comes to cancer diets … I’m going to “Never Surrender” (one of my favourite songs when I was teenager) …

  • 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!

  • A challenge for my Canadian friends (limited time offer)

    So, my fundraising for the Avon Walk (equivalent to the weekend to end women’s cancers in Canada) has pretty much stalled. I know that I have a lot of Canadian readers, who won’t get tax receipts for donating to my Avon walk, so I have a deal for you.

    If you make a donation to support someone running in the Terry Fox run this year, or a donation to the Terry Fox Foundation, and let me know, I’ll make the equivalent amount as a pledge on your behalf to my Avon walk ($2000 max on this offer). So you can donate to a great Canadian-based charity and get a tax receipt, and we will donate to a US charity – and twice as much money will go to charity.

    You can donate directly to the Terry Fox Foundation on their website: http://terryfox.org. The Terry Fox run is on September 14th this year, so this offer will expire on that day. When you let me know how much you have donated, also please let me know what you’d like to say on my banner page at: http://info.avonfoundation.org/goto/rjhogue.

    Thanks everyone!

  • The regret test

    My husband and I can be rather frugal with our money. This approach has allowed us to save, but also allowed us to take 16-months off work and bike around the world. It means that we have learned to always question when we buy something or spend money. We sometimes catch ourselves spending too much time debating over the cost of something trivial (like spending 45 minutes on the phone with t-mobile to figure out why I was charged $1.33 and getting it credited).

    One of the biggest things that has changed since my diagnosis is that I often make decisions that involve spending money based upon ‘the regret test’. What do I mean by that? I mean that I ask myself, ‘will I regret not doing it?‘ If the answer is yes, then I worry a lot less about the cost of the thing.

    What is interesting about this, is that often I’m not spending that much more money and sometimes it even ends up being less expensive. I think I’m just lucky when it comes to booking air travel – but also I’ve learned a few tricks like checking online before calling in a booking because the telephone agents always seem to quote $200 more than the online price and when you challenge them on it, they can get you the online ticket price!

    So, today I got to use up my credit with Air Canada (I had to cancel a trip when I was initially diagnosed) for a trip to visit my parents during American Thanksgiving. I managed to use up my credit and book my husbands flight with the price on the website, which today is $100 cheaper than it was when I checked two days ago.

  • Queen of wishful thinking

    When it comes to the entire surgery process, I find myself falling into the realm of ‘queen of wishful thinking’. I had convinced myself that ‘flat’ was that way to go. I joined a great supportive Facebook group ‘Flat & Fabulous’ and found that I was creating a new vision of myself that involved a beautiful flat chest – but it also involved a beautiful flat abdomen with no extra body fat.

    pushing_ball_uphill_4474x100pxMy reality is that I shall always being carrying extra body fat – if spending 16-month riding my bike around the world didn’t cause the perfect ‘flat’ body that I had envisioned then why do I think that cancer surgery would fix this. I’m in great physical shape now, and yet I still have 40% body fat. It isn’t something that will be changed by eating right and exercise – cause, in reality I do that already. As I age, I’m destined to gain a few more pounds, not loose them, and when you add in the early onset menopause (drug induced) that is part of the long-term treatment for breast cancer, my battle to keep my weight from increasing is all up hill.

    Another reality is that women who look as young as I do, and don’t have breast, but do have buddha bellies get as “when are you due?”. Our society associated that shape with pregnancy.

    So when the surgeon burst my bubble, I’ve had to do some serious reflection. What do I really want to look like after surgery? Long-term what do I want my body to be, in order to have a positive body image? What is a reasonable lifestyle for me to maintain?

    This last question is probably the most important. If my body image is tied to a lifestyle then I most definitely need to ensure that I’m not setting up unrealistic expectations of myself. I should not expect that magically, after double-mastectomy surgery that my body fat will just suddenly reduce itself. That I’ll magically be reformed into this skinny girl with no breasts and awesomely toned body – that is just me being completely unrealistic.

    Realistic expectations of mastectomy with my body type include having a concave space under my arms where currently I have fatty breast tissue. Not ‘flat’ space there, rather concave space! Reconstruction would be required to put some fat there, otherwise, I’ll have a gap between my armpit and my stomach fat where the ribs can be felt. My thoughts and focus had been on the front view, but I had not considered the three-dimensional view of my body.

    So now I’m looking at reconstruction options. There is a great video here that explains the various options. I’m strongly considering the procedures that involve re-allocation of my own body tissues. In addition, I’m looking at immediate reconstruction. This is a real option because I’ve done neo-adjuvant chemo, so the surgery will not delay chemotherapy. The only unknown variable is radiation. The surgeries that involve using my own tissue mean longer surgery (8-12 hours), longer hospital stay (4-5 days), plus longer recovery time (6-8 weeks). But from the reading I’ve done so far, I’m an ideal candidate. I have enough extra body fat, but not too much such that I shouldn’t have an increased risk of complications. It will be interesting to see what the surgeon has to say.

    So, now I’m in wait mode for a few weeks – while I recover from my last AC chemo and subject myself to the first couple of rounds of T-chemo (the first two or three rounds are supposed to be the hardest on this new chemo, as your body needs to adjust to it). One step at a time!

     

  • Reaching out

    It is difficult when you are new to someplace to start to reach out and meet new people. It is especially difficult to reach out when you have cancer (and it is obvious).

    When I first moved to California, I spend a fair bit of my time trying to make connections with people here. I joined a couple of “meet ups” and I went to church. I was making a real effort to meet new people and make connections. Unfortunately, after diagnosis that stopped. I did meet new people, but mostly they were related to my cancer diagnosis, rather than me (although I have to say I’ve made at least one friend through the cancer process). It has been very difficult to even think about going back to even the things in which I had already been doing, never mind doing something new.

    After my first service at the Unitarian Church in San Jose,  I decided we would give it a try in the fall when they went back to the regular church schedule. Like many Unitarian Churches, their summer schedule involved special lay led worship services, which are not always easy for new comers. However, shortly after the service I attended in May, I was diagnosed with breast cancer. I found myself wishing we had reached out to the congregation sooner, so that we would have had the support that comes with being a member, but also, found myself afraid to go to the congregation, as now I wasn’t just a normal person off the street, I am someone who is coming with a need (or at least a potential need).

    To help make the transition, I did ask our minister from Ottawa to make an introduction. That way, when we arrived, we would not be complete strangers to the church. But still, I was very hesitant. I certainly wasn’t willing to go alone to service – it was not optional that my husband join me. Part of me felt the connection to this congregation the first time I attended back in early May, but part of me was afraid to introduce myself to a new community. How do I even begin to say who I am now? How is my headscarf not an elephant in the room? If (when) we need help, how will be able to ask for it, having not first arrived in a position to give?

    So today, when we finally were in town on a Sunday (another challenge with reaching out is that we often go sailing or camping on the weekends). We made the leap and went to church. Truthfully, church went well today. The service was good and the people were really welcoming. We happened to attend on a Sunday where they had a special lunch for new people – so we stayed and got to meet a few people and the two ministers in a much smaller group setting. I was struck by how similar the people are to the people at church in Ottawa – they are all Unitarians after all! Although in the small group I did choose to disclose that I had cancer, I didn’t feel like it was something that was a barrier. I could have chosen not to say anything, and people would have just listened to what I had to say (we were sharing a bit about our spiritual pathways). In hindsight, I didn’t actually share that much about my spiritual path because I was so focused on getting the words out of my mouth … “shortly after I moved here, I was diagnosed with breast cancer” … I cannot remember what I said after that, but I quickly finished off my sharing and allowed the conversation to move on to the next person. And that was it. I felt accepted for who I was, and where I was, and no pressure was placed on me (or us). We were encouraged to get involved to the level in which we felt comfortable. Actually, as far as welcoming goes – this congregation did a pretty darn good job.

    So, we shall reach out a little further and join the monthly potluck supper group. It is a chance to meet the dynamically different people involved in the congregation in a small group setting – with no pressure to be anything except myself. This reminds me why I’m a Unitarian Universalist 🙂  … maybe on Friday I’ll reach out to one of the meet up groups that I was a part of before my diagnosis …  but I’m not sure I have the strength/courage to do that just yet, we’ll see.

  • Nothing quite feels like you expect it

    One of my fears has been regarding neuropathy. It is a common side effect for the Paclitaxol (aka T-Chemo) which I start on Labour Day (September 1st). It is also a less common side effect for AC chemo. It seems that I’m destined to experience it now!

    It all started this morning, with some tingling in my feet. I noticed that the front pads of my feet were a bit tingly (sort of like they were about to fall asleep but had not yet). Unfortunately, it didn’t get any better, and now I’m finding it a bit painful to walk – I can feel myself compensating for the tingly (which is less tingly and more like fine needles stuck into my feet). I only seem to notice it when I’m standing / walking – so it doesn’t bother me at all when I’m sitting or laying down (which is good). It may seem counter-intuitive, but the more I walk, the less painful it is (it isn’t really that painful, rather it is annoying).

    So, now I’m going to put on my running shoes and go out for a walk – in hopes that getting the blood flowing to my feet through walking will make the problem go away.

     

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