BC Becky

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

Category: active treatment

  • 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.

     

  • Rethinking reconstruction

    I had a couple of doctors updates yesterday. One with the breast surgeon and another with the oncologist. On the good news front, my oncologist said that my left breast felt like ‘a normal lumpy breast’ rather than a breast with a large cancerous tumor! This is a sign that the chemo is working. He also commented that this point we are on ‘auto-pilot’, finishing off the chemo regime with switch to weekly Paclitaxol (T-chemo) starting Labour Day for 12 weeks. It also means I have about 12 weeks to figure out surgery.

    I was so confident in my decision for no reconstruction, but that confidence was built upon assumptions that are proving to be incorrect. The surgeon re-enforced my concerns about lumps and bumps. The reality is, that I’m not a skinny girl. There is only so much a breast surgeon can do – their priority it to remove the cancer and with a mastectomy to also remove all breast tissue. Even with no reconstruction, I’m looking at two surgeries – the first to remove the cancer, and the second to clean up lumps and bumps – in part because they cannot predict how you will heal. The surgeon strongly recommended a consult with plastic surgery and radiation oncology before I make a decision. So now I’m reconsidering my options.

    If radiation is not necessary – then I’ll be a strong candidate for immediate reconstruction. This would mean, during the same surgery I would have my breasts removed and a procedure done to replace my breasts with something. The something is either an implant or some fat from another part of my body (usually the stomach). Breastcancer.org provides a good high level description of the different reconstruction options.  Personally, I’d rather go flat then have implants – in part because my body tends to react negatively to foreign objects, but also because they need to be replaced every 10-20 years. There are a couple of options that use stomach fat (not muscle) that may actually work out for me (Diep Flap and Siea Flap). I despise how they advertise it on the comparison chart as getting a bonus “tummy tuck”, but in essence that is what happens. They move excess fat from your tummy and replant it in your breast – replacing the breast tissue with the tummy fat. If it works well, it gives a more natural look and feel as compared to implants – but the surgery time and healing time is greater.

    The surgeon did a good job of encouraging me to think beyond the immediate time – think one year, five years, beyond. One of my realities is that I’m not suddenly going to become a skinny girl. That isn’t in the cards for me. So, my body will inevitably have various rolls and folds. Previously, I wrote a bit about my concern for Buddha Belly. So I need to consider, what option is going to leave me with the better self-image of my body? Since being diagnosed, I’ve enjoyed a positive self-image (more so than before diagnosis), but I don’t know if that would still be the case after surgery.

    The other thing that is often pointed out is that you do not know how you will react post-surgery. You may not think of your breasts as an important part of who you are now, but that might very well change when you wake up and they are gone. This is one of the more frightening aspects of whole process. You could be ‘certain’ and wake up to discover that you were wrong. One of the common approaches is to leave as many doors open for surgery. So, rather than doing double-mastectomy with no reconstruction, they do a double-mastectomy with skin sparing techniques. The surgery takes longer, but it leaves you with more of your skin, making reconstruction easier. You can then decide later if you want reconstruction. Using this approach keeps the door open for options but also draws out the number of surgeries and the length of time you are being treated. If you make the reconstruction decision before the mastectomy and you are a good candidate, they can do the first two surgeries at once (reducing the number of surgeries and overall healing time, but increasing the healing time as compared to mastectomy alone).

    So now I shall wait again, for the next set of consults, to see what my options actually are. And then, maybe I’ll make a decision, but maybe not …

  • Persistence, Tenacity, and New Blood

    Persistence, Tenacity, and New Blood

    This cancer journey reminds me of some aspects of our Going East bike trip – particularly during those times when persistence and tenacity are what you need to make it over that one last hill. I always thought this picture from our trip made a great motivational photo (Scott pushes the loaded recumbent bike up the mountain – you can see the sweat on his back – unfortunately the picture does not do the steepness of the hill justice). The locals thought we were crazy trying to bike over this mountain pass – but we were both persistent and tenacious and we made it!

    OK, this is steep

    Perhaps this is a better persistence picture (also in northern Thailand):

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    My point here, is this is how I feel when I’m feeling fatigued. I feel like the entire road is uphill. And although these pictures show a struggle, they also bring a smile to my face. They remind me of challenges that I have overcome. They provide me with that little extra reminder, that yes, I can do this.

    Yesterday, I had my first transfusion. The AC chemo was knocking out my red blood cells (RBC), and they were not being given enough of a chance to bounce back between rounds. Folks have asked about drugs to help with RBC. Apparently the drugs take a long time (6-8 weeks) to boost production, and the side effects can be worse than the side effects of a transfusion. Given the more immediate need for a boost now, it made sense. And so, I had my AC chemo on Monday and a transfusion of two units of RBC on Tuesday. I cannot say I immediately feel better – but then the AC chemo knocks me down for a few days, so it is hard to say. What I can say is that I have more colour – my cheeks are pinker and my lips have natural colour again. I had not really realized how pale I was before the transfusion.

    Unfortunately, my phone doesn’t take very good photos.

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    We were also serenaded by the harp during treatment, which was nice. Apparently, med students who are also musicians volunteer to play in the cancer center. This is the first time we’ve seen the harpist directly in the infusion treatment area.

    The volunteers at the hospital make the nice head scarfs/hats. I discovered that it works well when the tie is on the side – kinda makes me think I should learn to read tarot cards.

     

    So, now I have some new blood. I am still feeling some fatigue, but hopefully in the next day or two I’ll bounce back :-).

  • AC Cycle 4

    So today was my last cycle of AC chemo (yay). In theory, the T chemo that follows has less side effects (little nausea). Brought in my new clown to show off to all the nurses. He was a big hit!
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    It turned into a long day. We had a delay seeing the nurse practitioner to get sign off on chemo – unfortunately that delay turned into a 2.5-3hour delay. Then we had another delay on the saline drip for rehydration, which caused about another additional hour. So we arrived at Stanford at 11:20 and did not finish at transfusion until after 7pm. Add in the 30-45 minute drive each way and it definitely made for a long day.

    It looks like I’ll be Stanford bound again tomorrow morning for a transfusion. My red blood cell and other related things have been getting progressively lower with each dose of AC. So, at this point they are recommending a transfusion. Apparently, any medication that would treat this would take 6-8 weeks to take effect, and the side effects are actually less with the the transfusion. However, I apparently have some anti-bodies in my blood which means that the donated blood needs to be more closely screened to match my blood. I have an appointment tomorrow morning, but the blood might not be ready – so we are to call first before driving up.

    The new blood is due to come at a time when I usually have a low – so it might turn into a real blessing – giving me more energy when I typically don’t have much. Crossing my fingers that they find a match before tomorrow morning.

    Either way, this is the last dose of AC – so worthy of celebration. 🙂

  • Feeling strong

    I am surprised by how all of sudden my strength returns. Where only a week ago I could only swim 7 laps in the pool, I’m now swimming 30 and the only reason I stopped was because I had too many other errands to do.

    It seems that with each AC cycle the down days after neulasta are longer, but when my strength does return, I’m stronger than I’ve been before. In cycle three, I walked farther (10km on day 2), cycled farther (36km on day 10), and swam farther (we actually I swam this distance in cycle 2 as well 1200m) – than I had before chemo started.

    As I’ve discussed in my last post, I’m also struggling with increasing signs of depression – worsening with each cycle. This in part is related to not have access to my coping mechanisms (exercise) for the longer stretches each cycle. In part because the reality of having breast cancer is sinking in (denial is becoming less and less active in my brain), and a lack of knowing what will come next. Relating to exercise, each added day when I cannot get in a long workout, my stress and anxiety build. I’ll be working with the folks at onc-pysch on developing additional coping strategies, but will also be changing some medications to something new, where the side effects are actual effects that align well with counter-acting the effects of chemo (drowsiness, anti-neasea, and increase appetite). The new meds should also help deal with some of the ‘chemo-pause’ side effects (night hot flashes). We shall see how it all works – but for the next two or three days, I should be feeling strong – and will try to enjoy it while it lasts.

    When I was up at Stanford yesterday, I visited my tree. I wish pictures could capture the scent of the eucalyptus.
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    I’m not nearly as good at taking pictures near myself near the tree – but here I am sporting the new cap Maha sent me from Egypt 🙂

     

     

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