BC Becky

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

Tag: Hawaii

  • 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!

     

  • Day 3 is just plain hard

    Today is day 3 and it is a hard day. It was a hard day last cycle too. I am thankful that there will only be two more cycles of AC and that means only two more day threes.

    Why is day three so hard? The neulasta pains are crazy. It isn’t a new kind of muscle pain – pain from the inside out. It hurts to swallow but it isn’t a sore throat. It is the muscles around the throat and the neck that all just plain hurt. And this makes me feel sad.

    I walked this morning, and I even biked a short bit this afternoon, but that didn’t seem to prevent the pains – although it was nice to get out – it is also very hot outside today – so I am thankful that we have central air!  But it is still hard. It is a day a sleep a lot and watch TV a lot …

    The biopsy on Monday means I couldn’t swim today, so I missed my magical afternoon swimming with my clothing on. I will not allow anything to disrupt that routine next cycle as I think it is one of the things that helps me get through it. I’d also like to do Reiki on day 3, but my Reiki healer is away this week, so I don’t see her until Tuesday. Hopefully, she will be in next cycle.

    So, now I know, day 3 is hard, but it is just one day … tomorrow will be better.

    The good news today is that we finally got some of the scheduling figured out. There was a mix up on the schedule for chemo, so they had the wrong type listed for the second round. So, now I know my last infusion date is set for November 17th.  So, surgery will be either December 10 or December 17 (I need to decide which date to have them hold). So, Hawaii will be the week of December 1st … something to look forward to …

  • Seriousness is sinking in

    I’m starting to shed my hair. I noticed at first when I use the toilet, and then again when I dried my hair after the shower – seeing enough bits of hair in the towel that I had to throw it in the wash!

    At Wednesday’s oncologist appointment, when I asked about surgery timing, specifying my desire to spend a week in Hawaii before surgery, the point was made not to push it too late. There is enough time for that week, but I should not plan on pushing surgery out 2-3 months. The comment was in the lines of “we’ve done all this chemo, don’t waste it”. This cancer won’t be killed that easily – even if the masses shrink to smaller sizes they need to be removed.

    Yesterday, I got a short synopsis of the pathology of the third mass (the small one in my left breast). It is DCIS PR/HR+,HER2- with a small Ki-67 (<5%). This is sometimes called pre-cancerous or cancer in the duct itself, as it has not yet spread to the surrounding breast tissue. DCIS has a high likelihood of turning into IDC (which my other two masses are). So this is my magic number three cancer.

    I say magic number three because that seems to be my meditation number. When I took swimming lessons last fall, the instructor has me breath after every three strokes. Ever since then, three seemed to be a better number for me for meditating. When I do yoga, I hold poses for three breaths, and when I try to calm my nerves to sleep I count my breathes 1-2-3 and then repeat. So three seems to be my number.

    So, now that I have three cancers, it can stop there! No need to go any further!

    My plan for a triathlon before surgery will likely need to be reschedule until after surgery. The window won’t be long enough for me to manage it and Hawaii at the same time – and Hawaii is definitely something I plan to do (Maui more specifically – easy to get to from here and an easy island to get around).

    I do, however, have a new plan for after surgery. One of the wonderful ladies on the Flat and Fabulous Facebook group has inspired me to aim to trapeze at Club Med Cancun in the fall of 2015. I want to be fully recovered from surgery such that I can do something so crazy as swing from a trapeze – plus they have sailing and kayaking too … some nice serious activities that require upper body strength.

    I am finding this process of hurdles not dissimilar to doing a PhD. At each phase there are additional hurdles to overcome. One bit of advice we are given in the PhD is to celebrate each hurdle as you complete it. My first hurdle is AC chemo. I’ve done two treatments, so one could say 1/2 way, but that would not be fair … as I still need to recover from this second treatment before I can truthfully call it done!

    I am happy that I am starting to get some productive days back. My life isn’t all about cancer anymore. I am re-emerging into my academic life, trying to pull together as much as I can to make a dissertation out of my existing thesis project. I have a couple of things that need to happen in the fall that hopefully I can make happen. If they do, then I shall have enough data to turn it into something. I have learned a lot, and do have a lot to share – I just need close it off and put it all together.

    So with the seriousness of this disease sinking in, what is also sinking in is my need to focus on the future – and on what comes afterwards (or at least what I’m going to do with the next year and a half that doesn’t involve chemo and cancer surgery).

  • 2nd Round of Chemo

    Today was my second round of chemo. It was actually much less traumatic than I expected it to be. It really helped that someone in the BC Connections Facebook group commented that her second round went a lot better than the first – so rather than hearing horror stories about the second round, I am hopeful that things will run a little smoother now that I understand some of the side effects that I can expect. The pains may still come, but they won’t be new, and there are things that I can do in advance of the pain to hopefully prevent it.

    Since chemo is a pretty ridiculous idea, I went for a ridiculous outfit! And of course we also needed the team selfie with our matching haircuts 🙂

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    Photo Jul 23, 2 05 05 PM

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    This cycle will be 13 days rather than 14, as my oncologist wants to move me back onto the ‘normal’ schedule of Monday’s. There was no way I would be ready for chemo on day 12, so day 13 will need to do. I was kind of hoping that we would actually push it out again so I had a few more days of recovery. Oh well.

    The oncologist was also encouraged by the treatment so far. Based on his exam and his notes, he seems to think that my tumor in softer than it was – which is good (means the chemo is working). Unfortunately, the biopsy results on the third mass were not in yet, so I don’t know about that one yet. I did, however, find out that surgery should be planned for 2-4 weeks post chemo – and that it should not be delayed. This means that my Hawaii trip (see Breast Memorial) will be either the week of American Thanksgiving or the following week – with surgery the week we get back from Hawaii. I will book a follow-up appointment with the surgeon in the next week or so, so that we can get a date for surgery. Apparently, things fill up towards the end of the year. One advantage to doing it this year is that it will cost us less, as all our “out of pocket” maximums reset on January 1st.

    To avoid confusion – as I kept confusing myself – chemo day is now day 1 not day 0 – this aligns with the days that the doctors use as well. I’ve started a new chart for this cycle (adding in my exercise as well). So far it has the preventative stuff on it. One bit of good news is that I can take my arthritis NSAID anytime, they just don’t want me to take aspirin. Since the arthritis meds also significantly reduce the Neulasta side effects, this is huge for me, as it really helps. The oncologist recommended taking it preventatively, so I’ve added it to my chart as a reminder.

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  • In for an emotional day (maybe)

    I’m happy to report that the worst of the bone pains has passed. Once the nurse called me back, she looked into it, and advised that I could take an NSAID (like ibuprofen) for the pain. I have stronger NSAID for my arthritis, so I took one of them and within 30 minutes the pain had almost completely subsided.

    Yesterday was also my most tired day. I took a nap at 11am and woke up at 2pm. I clearly needed to spend the day mostly sleeping (although I did do yoga and go for a walk – albeit a short walk). Both the yoga and walk made me feel better – so as much as it is difficult to motivate at times, I know that getting out and exercising does make me feel better.

    Today I get to go swimming again. The nurse explained that the bone pain is caused by the overproduction of white blood cells being pushed out from the bone marrow into the blood. Since there are a lot all of a sudden, this causes pain – but it also is a sign of the rebound. So with the pain stopping (I’m sitting writing this with no medication in me – so it isn’t the medication dulling the pain, rather then pain being finished), my blood counts should be back up which means swimming is back on the agenda (yay).

    So, if chemo is day 1 (we are recalibrating to a 1 offset rather than 0 as that is what most of the health folks do) then day 11 is my rebound day. I think I will create a graph which will allow me to better forecast symptoms and see if cycle 2 is similar. If I understand this correctly (crossing fingers), I’m not in recovery mode until the next treatment, which has been pushed to Wednesday because my oncologist is on vacation. Currently, the schedule has round three moving back to Monday, but I cannot imagine going back in to chemo at day 12, so we will definitely need to put that out. I may be strong, but I don’t need to unnecessarily push myself for the convenience of someone else’s schedule.

    I mention in the title that today may be an emotional one. Today I get my head shaved. If you haven’t done chemo you may not understand this idea of proactively shaving your head. There are a couple of reasons for it. The practical reason is that hair falling out in clumps is a pain. The second, more important one, is an exercise in control. If I’m going to lose my hair then I am going to control when it happens. Control is a huge issue with cancer, as it is one of the things you lose. You lose a lot of control over how your body is growing, how it reacts, and the various schedules of appointments and such. So, when you have an opportunity to take control and do something on your own terms, it can be important for some people to take control. I admit it, I’m a control freak. I like to plan things and I am already struggling with my inability to plan the exact dates of our Hawaii trip because I have no clue how I will be feeling.

    And so, I am taking control of my hair, and having it shaved today. Scott will get his head shaved too. We’ll take a fun selfie when it is done! I’m looking forward to seeing what it feels like to have my head rubbed, the same way I like to rub Scott’s head right after a hair cut!

  • The Colour Pink and a memorial celebration

    I find the reaction to the colour pink interesting. You see, I’ve always liked wearing pink, but not breast cancer pink (or as my reiki healer today called it Pepto Bismol pink). Since my diagnosis, I find it interesting the different reactions other people have to the colour pink. Mostly, it is a complete aversion to the colour. So, I thought I’d announced, I’m not against pink, just please not Pepto Bismol pink). I really like dark deep pinks (as well as greens and blues).

    This morning I was thinking of the memorial post that I made to Puffie – on our Going East bike trip, we had a bag stolen. Of all the things in the bag, the one loss that I felt was that of our mascot Puffie – a stuffed Labrador puffin that we bought a the L’Anse Amour lighthouse. It got me thinking of memorials, and how they help deal with loss.

    I found myself wondering about (and craving) a memorial for my breasts. I wondered what others had done or if my thought of creating some kind of memoir was a totally crazy idea? I asked on a couple of breast cancer social media groups that I’m part of. I received a variety of suggestions for parties with catchy names (boob voyage) that all seemed to involved booby cakes and lots of alcohol (made me miss my girlfriends back in Ottawa). They were more in line with they’ve had a good life celebration before they are sent off.

    The response that really struck me was a truly heart felt post from a fellow blogger who is probably about my age, who created an art piece the night before her mastectomy. I really feel for women have children, whose emotional ties to their breasts relate directly to feeding their children as infants. I cannot say that I have that same bond, but I still feel a need somehow to do something before they are gone. Maybe its just something trivial like swimming topless in Hawaii (not sure its legal, but I’m sure an exception could be made) … I now have visions of a photo shoot. Scott with the new Go Pro camera, taking pictures of me swimming topless with the sea turtles and snorkeling around the amazing corral reefs in Maui. Maybe we will even charter a sailboat to take us to a nice spot, not full of tourists. A place to say a last goodbye. Sounds like heaven.

     

  • The calm and then the storm

    Yesterday was one of those calm then stormy days. It began with a breakfast meeting with a new friend, whom I met through the social network myBCTeam.com.  It turns out that we have a lot in common, and I think we would find ourselves as friend regardless of the cancer connection. She has a wealth of knowledge around breast cancer and resources available, which I’m sure will prove to be very helpful. I never thought that having breast cancer would be the thing that made it easier for us to meet people in California.

    I had not heard anything from Stanford until the afternoon. Then I got a call from interventional radiology. These are the folks that place the port. I now have that booked for Thursday. They use twilight sedation, similar to what they do with cataract surgery. They use a small incision (exactly what small means is definitely relative) to place a port directly into the vein. The port lives under the skin, so once the incision is healed I can swim and shower/bath without worry.

    Shortly thereafter I had a call from my oncologist (MO). He suggested that I could start chemo as early as Thursday – right after the port is placed. His call had woken me up from a pretty sound nap, so I was not even sure how to answer. I had to first answer the question of ‘which chemo’. I decided on AC-T. I had a gut feel about that one from the beginning. The MO said it was the one that about 80% of women who need chemo for hormone positive breast cancer get (this means they understand the side effects and how to treat them). Also, shortly after making that decision, my second oncologist confirmed that is the one she would recommend. So, I’ve heard from multiple sources that it is the right choice – and it feels like the right choice. So, both quantitative me and qualitative me agree on this one.

    I decided that I will not start chemo on Thursday even if it is an option (it still needs to clear insurance). It is all too fast, and I need to be mentally and physically prepared. Mostly, I need to ensure I’m well hydrated for a couple of days before and the placing of the port with twilight sedation means fasting prior to – so pretty the opposite of what my body needs.

    So, if I start on Monday it will go something like this (assuming there are no issues that cause breaks):

    June 30 – AC
    July 14 – AC (on this regime, hair typically falls out after second treatment, grows back during T)
    July 28 – AC
    Aug 11 – AC
    Aug 25 – T weekly for 12 weeks (until November 10)

    Some people are completely tired/fatigued during chemo. Others continue to work throughout. Apparently getting regular exercise helps to reduce the side effects, so I shall be trying to get out for walks and regular bike rides although perhaps not climbing too many mountains. Fortunately the paths near here are pretty flat. If my balance goes, we’ll look into renting or buying a used trike … we’ll make this happen!

    After that, there is a break for recovery before surgery. We are thinking a week or two on the big island in Hawaii! Last time we went to the Big Island (in 2006) we wanted to rent a VW camper van, but couldn’t because our Canadian car insurance would only cover continental US and we couldn’t find anyplace to buy insurance. Now that we have US car insurance, we’ll look into that option again.

     

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