BC Becky

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

Tag: planning

  • Preparing for neuropathy

    I have been thinking about neuropathy a bit lately – in part because several strong women in my support groups have been having neuropathy – specifically with the Taxol chemo. I’m currently on AC chemo, but when that is finished, I do 12 weeks of taxol.

    Neuropathy is one of the potential side effects. It can happen in both hands and feet. In hands it means that typing becomes challenging as you cannot feel your fingers and fine motor skills become challenging. In the feet, walking and biking become a challenge. For biking, the issue is not so much the pedaling (I have clip pedals), but rather the stopping. When you stop you typically put one foot on the ground, this can be a challenge if you cannot feel your foot!

    To deal with neuropathy in my hands (if it happens), I will likely be using Siri a lot. I already use dictation a lot on my iPhone so that I rarely ever type anything using the iPhone keyboard. I have dictation turned on for my Mac, so I all I need to do is hit the fn key twice and then talk to my computer, and the words appear. I can do about a paragraph at a time. It is truly amazing to see just how much voice recognition software has improved over the years. For those using PCs, I can highly recommend Dragon Naturally Speaking. I’m not sure how well it works with different accents, but it seems to do Canadian pretty well (although words like tour need to be trained).

    To deal with neuropathy in my feet, we are looking into stabilizers for my recumbent. I had originally thought I would need a trike, but we really don’t have the space for one in our apartment, plus the cost is a bit much for something that I would only need temporarily. I will need something to help with balance if I have neuropathy, but also after surgery. The big advantage to my recumbent is that it has under-seat steering, so I don’t need to lift my arms to steer. However, there is an issue with balance. We have since discovered that one can buy various stabilizers for bikes. These are like training wheels but designed for adult bikes, and are much sturdier. Now we just need to research which stabilizers work best for my ‘bent.

    Another issue we need to deal with is groceries. Yesterday, after grocery shopping, I couldn’t carry the groceries back to the apartment. I had to make three trips, because any weight on my left side caused bleeding at my biopsy site. So, we will be looking around for a cute cart that will allow me to load groceries from the car and pull them up to the apartment. I had a cute one from IKEA in Ottawa, but ended up leaving it there when I moved.

    So, planning Becky is hoping for the best but planning for contingencies just in case.

     

     

  • Preparations

    I’ve talked before about how other things I have done in my life have prepared me well for this new journey. At the chemo class yesterday, the nurse talked about taking it one step at a time but also about celebrating between the various phases. This is very much the same advice given when you start a PhD. It is said “this is a marathon, not a sprint”.

    Also similar is the challenge in planning. Many of my PhD friends can relate to the challenge in planning things like family vacations. There are so many variables, and so many uncertainties, that planning is difficult. You want to make sure you are in a good place to actually take a break.

    And I’m a planner. I’m someone that likes to have things mapped out. I had my schedule mapped up to the end of 2014 – exactly how I would get my data collection finished, the number of trips to Ottawa, various conferences. Now I just don’t know. It is nice (and yet scary) to have a start date, but there are still so many uncertainties. I’ll get to learn a lot about blood counts – if any of my counts fall too low, they will pause treatment to allow them to recover. This of course, will put a wrench into any plans that I make.

    Fortunately, I also have the experience of our bike trip to draw on. There, we adapted. Although we still had some scheduled components. We had container ships to catch – and the ships wouldn’t be waiting for us – we needed to be there when they were there. At times, that meant using trains or buses to help us get to where the ships were going to be. We had to adapt our plans.

    With the shift of chemo start to July 7th, and hopefully not too many doctors appointments next week, we have a chance to get away for a few days (we hope). Well before the whole cancer thing, we had booked a campsite up at Yosemite for a few days. Although we had originally planned for four nights, we may only go up for a couple of nights – but still, it will be nice to get away. I have not yet been to Yosemite, so it will be nice to see what all the fuss is about.

     

  • Significance of dates and getting ready for chemo

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

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

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

    We went to the chemo class today. The information provided was mostly confirmatory – it confirmed a lot of what we already knew. We were able to reduce our worries about some of the excessive precautions listed the “Understanding Chemotherapy: A guide for patients and families” by the American Cancer Society. It provided some horribly scary recommendations – saying things like for the first 48-hours we need to be careful not to exchange bodily fluids, and we shouldn’t use the same toilet, and that whoever cleans should wear two pairs of rubber gloves. Scott is looking up the sources in the academic literature to see if there is any merit in it. When I mentioned this to one of the many nurses I talk to, she thought I was crazy. She recommended the website http://chemocare.com/ for information on chemo care. Photo Jun 25, 2 35 31 PM

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

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

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

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

  • 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.

     

  • Knowing what to expect

    “In my experience, fear comes from not knowing what to expect and not feeling you have any control over what’s about to happen. When you feel helpless, you’re far more afraid than you would be if you knew the facts. If you’re not sure what to be alarmed about, everything is alarming.” (Chris Hatfield in “An Astronaut’s Guide to Life on Earth”).

    As the details of tests come back, you are presented with choices. I’ve noticed that all choices seem to come in pairs. You make one choice and then you are presented with the next choice. The quantified data tells you what choices you have, that is, it narrows things down, but the qualified self is who needs to make the decision. So, at times, it is the gut that decides, based upon a bunch of other information.

    Today we got a couple of interesting lab results back. First, the HER2 FISH test came back negative. This is a good thing, as the HER2 treatments aren’t that great (not that any of the treatments are that great). What it means is that the type of cancer I have is the one they understand the most.

    The MRI also showed something interesting. Rather than having a large 4cm+ tumor in my left breast, I actually have two smaller tumors (2cm and 3cm). I’m not completely certain how to take this information, as I now have three tumors. However, the treatment for one is the same as the treatment for the other – so from a treatment perspective nothing changes – and I don’t have a ‘big’ tumor. The MRI also showed no indication of node involvement – which means I caught it early.

    Decisions come in pairs. The first choice is chemo first or surgery first. The next choice depends on the first, but either way, when it comes to surgery I will need to decide on whether I want a mastectomy or a lumpectomy plus radiation. Whatever I do one side, I’ll do on the other – symmetry matters to me.

    After confirming that chemo was advised regardless of surgery choice (increased prognosis by 10% in cases similar to mine), and the chemo before or after surgery didn’t make a difference in the prognosis, but could make surgery easier, the first decision I made was to go with chemo first. My gut had been telling me this for quite some time. I just feel like this thing came out of no where and is spreading, and the only way to catch it systemically is with chemo.

    Of course, that wasn’t the only decision – because every decision leads to another decision. Now I need to choose between two chemo regimes. The quantitative numbers say they have the same outcomes (they did some clinical trials on both regimes and neither was preferred over the other).

    The two options look something like this:

    • option 1: doxorubicin and cyclophosphamide followed by paclitaxel (1 treatment every 2 weeks for 4 cycles, followed by one treatment per week for 12 cycles) – AC -> T
    • option 2:  docetaxel and cyclophsophamide (1 treatment every 3 weeks for 6 cycles) – TC

    They are given at different intervals, but I’ve decided that the logistics of intervals is not an important variable for me. Some people chose one over the other based upon convenience of treatment (the latter option requires less visits and less infusions). So now I must choose based upon side effects, and which I think will be easier / better for me.

    After the doctors appointments, we went for a walk around the arboretum. We found the perfect tree for my picture series. It is an old eucalyptus (huge tree) which hasn’t yet shed its bark for this season – so it is showing older growth now that as the weeks pass shall shed to show the underlying new growth. We also happened across the coolest giant cactus garden. I’ve never seen cacti so large! And finally, we sat in the shade on the back of Stanford’s mausoleum for enjoy a picnic lunch.

    Photo Jun 23, 12 39 23 PM Photo Jun 23, 12 36 07 PM Photo Jun 23, 12 36 49 PM

     

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