BC Becky

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

Category: recovery

  • Permission to be selfish, saying no, and looking to the future

    Crossing my stream this morning was a post by Cancer Curmudgeon about her post-cancer Mean Streak.  I read it and I thought, what has cancer changed in me? I’ve thought a lot about this lately.

    There are three things that come to my mind: (1) I’m more selfish, (2) It’s easier to say no, and (3) I have a shortsighted view of the future.

    First, I often feel that I’m being selfish. When I was going through active treatment, it was easy to give myself permission to be selfish. I often tell other women who are in treatment that they are allowed to be selfish – this message is especially important to mothers who tend to be constantly giving to their children such that they themselves do not get taken care of. During active treatment, it is important to let people take care of you. However, I’m past that. I’m in active recovery now. I still find that I am selfish. That is something that has changed in me. I’m empathetic to others, but I’m also aware of when it becomes a drain on me, and I shut that drain down. It is a defense mechanism that I need.

    I am also finding it easier to say no. You would not get that by how much I’m doing. I still suffer from FOMO (Fear Of Missing Out). I end up signing up for too many things because I don’t want to be missing out on things – but on the other hand, if it is something I don’t really want to do, saying no is a whole lot easier than it used to be. My energy is still limited, it is finite, and so sometimes I just need to say no.

    Unlike Cancer Curmudgeon, my priorities are clearer. This also makes it easier for me to say no. I’m still totally lost as to where I want to go next. My view of the future is very shortsighted. During active treatment my worldview/future view was to the next step in treatment. During active recovery my worldview/future view is to my next trip. I’m traveling for both vacation and to attend academic conferences – which is about the closest thing to ‘work’ travel that I do. I enjoy both, but both are also exhausting. My future view only goes so far as the next 3-4 months. I cannot yet think of my future beyond that point. I don’t know how well I will be. I don’t know how recovered I will be. I cannot think of plan much beyond that window right now. Perhaps this is one area where I’ll know I’m out of active recovery. That is, when I can think if my future beyond the next 3-4 months, then I know I will have recovered – whatever that means!

     

  • Numbness and pain …

    I’ve noticed that lately I’m a lot more aware of these appendages on my chest, which have no feeling, and my surgeons continue to remind me “are not breasts” even though they look an awful lot like breasts, and when you touch them, they kinda feel like breasts. But alas, they are not breasts, in that they do not have any of the fatty breast tissue in them. That was all taken away when I had a double-mastectomy to remove the last bits of cancer in my system – December 17, 2014. Although I don’t remember much of that day (I was wheeled into the operating room at 8am), I shall never forget it.

    Lately, I seem to be much more aware of the numbness in my fake breasts. I’m particularly aware of the area where my new breasts brush up against my upper arms. My upper arms can feel that something is there, but the breasts don’t feel the upper arms. So it all just feels kinda wrong. I actually caught myself bumping into a cupboard in the kitchen today – the cupboard door made contact with my breast, so I didn’t feel it.

    I’m also numb in a large portion of the front of my stomach – where the donor tissue was taken. I have a scar that goes from one hip bone to the other. I can feel the outside 2 or 3 inches of the scar – the part that is actually over my hipbone, but I cannot feel the middle of my belly. In some ways, I’m feeling like I’m loose more feeling rather than gaining it. That more of me is numb now than it used to be. I’m also starting to feel some pain along the incision in my belly. I’m particularly aware of it on the part of my stomach between my new belly button (which is pretty cute BTW) and my stomach incision. The pain comes and goes – and it is not bad pain – in that I don’t need to take any meds to block it – it is an awareness pain. I find that rubbing my belly helps – perhaps it is a way to help the brain make the connection between the new nerves and the physical location of the sensation. I don’t know, I just know that when I get that feeling along my belly, it is eased by rubbing.

    I’ve also had a couple of times where I’ve had an itch on my not-breasts. This is really difficult to manage. The itch feels like it is coming from the skin on the breasts, but I don’t have any sensation there – which means that scratching it does nothing. It is horribly frustrating – it is an itch that cannot be scratched.

    One of the times when I am most aware of the numbness is when I go for a swim. I find myself hesitating going out to the pool – in part because it just feels really weird. I am thankful for my reconstruction surgery – such that I can wear the same swimsuit I wore before my mastectomy, and I don’t need to worry about prosthetics. I’m afraid that prosthetics would have been one too many sources of inertia that I’d never actually get to the pool. As it is, I can spend a good hour between the time I decide I’m going for a swim and the time I actually get my swimsuit on and walk out to the pool (thankful that I don’t actually have to go any further to swim or I’d never actually get there).

    So tonight, with my ankles unhappy with me, I was happy to hop in the pool (rather than biking or walking). It was weird walking in. There were kids playing in the pool, so I tried to walk in (one hand on the railing so as not to lose my balance) without making funny faces as various parts of my body first get exposed to the cool water (the pool was pretty warm tonight, which made it easier). I recall from before, that stepping into the pool involved a shock at the belly line and again at the booby line – that is, when the water first approaches the belly and the breasts respectively. I no longer get that shock – the impact of the cool water on my belly and breasts just isn’t there. If the water is cold, I will eventually feel the coolness in my bones/flesh – but I don’t have that direct cold sensation on my belly or breast skin.

    One thing that being in the pool does, is it helps me figure out what I’m feeling and what I’m not feeling. I recall when I first started to get neuropathy, that I found swimming to be an odd sensation. Climbing into the pool highlighted that I couldn’t feel the water on my skin. I could feel the coolness of the water, but I couldn’t feel the actual water. Similar to how rubbing my belly when it hurts helps my brain figure out where those new nerves physically are – hopping in the pool helps me appreciate the boundaries of my numbness.

     

  • Tenacity – or Lack There Of?

    I used to see myself as someone with lots of tenacity. It is what got me through tough days on our Going East bike tour, but also the tough days during chemo. I walk through the queasiness and neuropathy pain. I exercised every day!

    Now that I’m no longer in active treatment, I’m finding it more difficult to call upon my tenacity. It is a daily struggle. I do find it easier when I’m with someone. Hiking with my hubby while on vacation, I find myself hiking longer trails at higher elevations than I thought I could, but still, I am comparing myself to before and finding myself wholly inadequate. I don’t want to feel pain when I hike. I don’t want to be limited by how much my feet hurt.

    I find myself looking back and wondering where I found the strength before? What was inside me that allowed me to call upon my tenacity and perseverance to get through it all? How can I find that again and get that back?

  • I had planned to write

    I had all these great plans about what blog post I would write as I approach the one year mark … I was going to count how many doctors appointments I’ve had in the last year, but when I looked at the calendar for last June I almost lost it. I just could not go back there and analyze it, as if the data held no meaning, or emotion.

    On June 1st last year, after a long bike ride around the Alviso, as I showered I noticed a hard spot on my left breast. I thought I’d pulled a muscle in my peck. I waited a week, and when it didn’t go away I went to see my family doctor. A few days after that – June 12, 2014 – the radiologist told me I had breast cancer.

    I had planned on looking back at my accomplishments over the last year. I wanted to write a post that celebrated some of those accomplishments. Despite chemotherapy (4 AC, 9 Paclitaxol) and three surgeries, I still managed to co-author at least two papers, present a poster at a conference, attend a conference, write 320 posts for this blog, write 60ish posts on my academic blog (http://rjh.goingeast.ca), create on free open online course (http://shouldiblog.org), with my buddy Maha – launch http://virtuallyconnecting.org, walk 274km, cycle 1091 km, and hike 90km. Unfortunately, I didn’t track my swimming.

    I expect that the next couple of weeks will be tough – but I’m running away from it all. For the next 10 days, the days will be days, but they won’t be dates. I’ll be off camping in the Eastern Sierra-Nevada – mostly out of cell phone / data range. I’m hoping to breath in some mountain air and just experience life. Sorry, don’t expect to be writing much while I’m away. I’m taking a vacation from it all. We’ll see how well that works!

     

     

  • Hypochondriac or engaged patient? Can you tell the difference?

    There are times when I am made to feel like a hypochondriac – those seem to be the times that one of the nurses at my oncologists office dismisses my latest concern as “not a problem”. It means that the next time something comes up, I find that I ask myself whether or not it is something I should be reporting to them. I doubt myself. Then I remind myself that I’m an engaged patient and that I should advocate for myself. If something is wrong, or I think there is something wrong, then I need to push to get it seen to.

    It all started on the flight to Ottawa (Wednesday, May 13) – the very beginning of my trip to Ottawa. My shoulder was bothering me on the plane. Then I felt a lump. Yup, a real lump. I could feel it along the top of my shoulder. When I got to the hotel, I pulled of my shirt and I could visibly see the lump. I felt it. No pain, moves around a little under the skin. Logical me said it was nothing, but emotion me was scared.

    I waited until Monday before I sent a message off to my oncologist explaining that I was travelling but that I had found this lump. I described it in detail.

    I got a response from the nurse practitioner that she had noticed it when she examined me the previous week. It was nothing to worry about, and if it was still a concern in 4-5 weeks to follow up. The thing is, I know it wasn’t there before. I would have noticed if it was. If it was there when she examined me, there would have at least been a conversation around it. It wasn’t there before! But alas, there was nothing I could do while I was on my trip. I put it aside, hovering at the back of my mind, and continued on with visits to my many friends in Ottawa.

    I travelled to Vancouver on Wednesday. On Friday, I noticed a sudden increase in floaters in my right eye. I had had my eyes checked only the week before my trip, so everything was mostly fine. My right eye has a secondary cataract, which needs a YAG laser procedure. I’ve already done the procedure on the left side, so it wasn’t something that was worrying me. After getting home, I sent a message to my ophthalmologist asking about the increase in floaters as well as the possibility of moving up the YAG surgery. I thought the secondary cataract, which is already affecting vision in my right, was likely the cause of the floaters. She was concerned, and recommended that I see the on-call optometrist Tuesday (Monday was a holiday here).

    Tuesday began with a physiotherapy appointment. There I confirmed that the lump on my should was not present before I left for Ottawa. I had seen my physiotherapist the day before going to Ottawa, so I knew that if there had been a lump it would have been in her records. She confirmed that it wasn’t in my records, but also that it was nothing to worry about. She has seen breast cancer recurrences. This was not something she was worried about. It was “likely fat” or lipoma, but she made the same caveat any non-doctor makes, if I’m worried I should check with my oncologist.

    After the physio appointment, I saw the optometrist, who after dilating my pupils validated that I didn’t have any tearing or issues with my retinas. My eyes looked good. I should consider the current set of floaters as my “new normal”, and if anything changes I should come back. Otherwise, I was good to go. This meant that the YAG surgery could be moved up – it is now scheduled for June 15th.

    I then went home and phoned my oncologist’s office. I spoke to the nurse, who again said that the nurse practitioner said it wasn’t an issue. I explained that I was certain that the lump wasn’t there before and that I really wanted someone, anyone, to look at it. I wanted to have it confirmed that it was nothing before going on vacation for two weeks. I didn’t want to spend another two weeks catastrophizing and convincing myself that I’d had a recurrence. She suggested maybe I could have my primary care doctor look at it. I said, no, I want someone from oncology to look at it. I suggested maybe someone on the surgery side of things. With that suggestion, both she and I sent messages off to my surgeon. Within 5 minutes, I had a call from my surgeon’s physician assistant. Rather than treating me like a hypochondriac, she asked when I wanted to come in. I explained that I had sleep clinic that night but could come in first thing Wednesday morning. So, we decided on an 8:30am appointment. I felt so much better just knowing that someone was going to look at it, and take me seriously.

    Last night, I got hooked up to a bunch of machines and slept at Stanford. I don’t have the final results yet, I’m told I’ll get them in the mail. What I do know is that I did not have sleep apnea bad enough to warrant them waking me up and testing out the CPAP machines. That is a huge sigh of relief.

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    After the sleep clinic, I saw my breast surgeon’s PA. She looked at the lump and confirmed it was just a lipoma. It was nothing for me to worry about. However, she ordered an ultrasound which should be done sometime before my next appointment with the surgeon (end of July).

    So, in the last 48-hours, it as been confirmed that I DO NOT have: (1) retinal detachment, (2) sleep apnea, or (3) a cancer recurrence.

    I’m glad to report that although I’m exhausted from all the worrying, and running around to various appointments, I am in good health. I’m so ready for a vacation!

    After all this, I went for a walk with a friend. We were blessed to see two jack-rabbits in the nature area just up our street. She commented that they reminded her of the book:
    Guess How Much I Love You

  • Bryan Adams and a Sleep Clinic

    I’m laughing at the title of this post. The two things are completely unrelated, but I didn’t feel like writing two posts.

    Saturday, we flew back from Vancouver, with just enough time to drop our stuff off at Scott’s office, grab dinner, then head to the Bryan Adams concert at Shoreline Amphitheater in Mountain View. I’m pleased to report that with the ADA (handicap) parking permit, we didn’t have to pay for parking. We were able to park in the VIP parking lot, and which also meant it was easy to leave after the concert. The experience was seamless enough that we are considering other concerts at Shoreline!

    I was vary nervous when I bought the tickets. I didn’t not whether I’d be physically able to enjoy the concert. We decided to buy tickets in the “limited mobility” section. This isn’t a wheelchair section, but what it did mean was that we were at the top, near the back, but on and end. The view from my seat wasn’t the greatest, but I could easily step into the aisle to get a better view. Here is a picture taken during the sound check just before the show:
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    The energy at the concert was not nearly the same energy I’ve come to expect at a Bryan Adams concert. It wasn’t Bryan Adams or the band, rather it was the audience. They just didn’t have the same level of energy and excitement that one would see at a Canadian show.

    A few songs into the show, the ushers asked if we’d like to move a little closer. The easy answer was yes! So, they moved us down to some empty seats in about the 6th row, nice and center. What was especially nice with these new seats was that even when I was sitting, I still had an unobstructed view of Bryan Adams (this was a bit of a fluke – it was only because of how the people in front were staggered). Anyways, it was really nice to get a nice close view, and still be able to sit when I needed to.

    I thought this was an amusing photo – If you look on the front of the stage you see Bryan Adams, and on the big screen behind (right above Bryan’s head) you can see me in my pink shirt and Scott in his orange jacket!

    Now for the second part of this post. I’m writing from my room at the Stanford sleep clinic. Later, (shortly after writing this post), the technician will come back in and hook me up to a bunch of measuring devices. I’m then supposed to sleep “per normal” .. yah right.

    I was told the room would be like sleeping in a 4-star hotel. I don’t think those who say that have experienced a 4-star hotel lately! I think it is closer to a 3-star. It is nice, none the less. I’m glad I brought my pillow as I don’t really like the ones they provided. I was pleasantly surprised to discover a shower, so I can shower here in the morning if I wish.

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    This is both a screening and diagnostic study. What they will do is monitor, and if they discover significant sleep apnea, they will wake me up and put on a CPAP machine. I’ll be fitted for one before I go to sleep, just in case. They will then continue monitoring. It is expected that if they find anything significant, it will be known within the first 2-3 hours of sleeping. I’m kind of glad to know that they will diagnose it right away. If I don’t get woken up, then I’ll know that they didn’t find anything serious enough to warrant immediate treatment. We’ll see how it goes. Later, I’ll try and get a selfie of me with all the nodes hooked up!

  • Active recovery and numbness

    I mentioned in my previous post, that I’m in active recovery. I’ve decided that this is a thing, a new term, something that I’m going to start using when people ask me about where I am in my cancer journey. The terms used are usually active treatment, and recovery and renewal. The latter doesn’t truly describe where I am. If I say I’m in recovery, there is an expectation that I have recovered. This is not in any way true.

    For me, active recovery represents the stage I’m in. I’m still going to health care appointments at least twice a week. They may not be appointments with cancer doctors, but they are still cancer related appointments (e.g. oncology physiotherapy, sleep clinic, psychiatry). I’m also taking part in exercise programs (e.g. Living Strong Living Well), and making a point of getting at least 1 hour of exercise every day. Each of these activities takes time out of my day. Then add in that I’m trying to eat better, which involves cooking my own meals, mostly from scratch. Again, something that take time out of my day.

    My brain is not functioning at full capacity yet. This means that it often takes longer for me to do things. I cannot concentrate as well as I’d like. Although I’m getting better every day, I’m still suffering some of the cognitive side effects of chemotherapy. These are weird, as you do not know that you are experiencing it until it is healed – then you realize just how much of a fog you were previously in.

    Then there are the real physical issues. I have some tendonitis in my shoulder that makes some physical activity difficult. I’m also experiencing a lot more neuropathy pain in my feet. This is in part a good thing, as it is a sign of healing, but it is also rather painful and can limit how much physical activity I can do. My ability to walk seems to have plateaued (or even decreased). I’m stuck at that 5km distance. I’m hoping that some hikes during our upcoming vacation will help me push past that boundary – but I’m also very aware that I may not push past it anytime soon.

    I’m also becoming more and more aware of the lack of feeling in my breasts. This is an odd thing – it is almost like after getting a filling at the dentist. You keep wanting to feel your face to confirm that it is there. Eventually, you touch it to confirm that feeling is returning. I keep wanting to feel my breasts. Each time I confirm that they are there, but also it confirms that there is no feeling 🙁 – this test of feeling of one’s breasts is not something one should be doing in public! I also need to massage my breasts, as fluid can build up if I don’t (there are no lymph nodes in the reconstructed breasts). Before I would touch them to ensure they were healthy, now I’m touching them to see what I can feel. There is a new, different, purpose in my mind as I do the familiar activity. The new breasts are also a reminder of the loss. Another something that I am just now starting to come to terms with. As the cognitive numbness fades, the physical numbness serves as a reminder of all that has happened in this last year.

    So when someone asks me where I am with my cancer treatment, my answer will be active recovery. I’m actively trying to recover from the insult that was/is cancer.

  • The need for me to be well

    This week I spent a lot of time visiting with friends – all friends from before I began my cancer journey. It was so great to get a chance to see people again, and to receive so many hugs 🙂 I am saddened by the loss of friends who cannot cope with my illness, but that is something that I need to move on from. I need to spend my energy being with people who want to spend time with me. There is no shortage there – as my schedule in Ottawa highlighted, I had lots of friends who wanted to see me and spend a little time with me.

    One of the biggest challenges is that my friends who don’t have cancer, and especially those that are not that close to me, need me to be well. They need me to say that I am finished treatment and that I’m doing well – that the cancer is gone and that I’m on the road to recovery. And I struggle with that, because I cannot be authentic. I need to be this persona that is doing just fine, when in fact I’m struggling. I’m struggling with the physical limitations that my recovering body has. I’m exhausted. My feet hurt. I ache after sitting for any length of time. I’m struggling with the mental health aspects – managing fear of recurrence. I’m actually doing that pretty well right now but it feels tentative. It doesn’t feel like I’ve completely overcome that yet.

    In California, most of my friends are cancer friends. That is, we became friends because we all have some form of breast cancer. It is different interacting with this group of friends because they get it.  My schedule has meant that I keep missing support groups. I can definitely feel that gap in my life. I need to spend a little time connecting with people that get it. That understand that although I’m through treatment and may very well be cancer free, I cannot say for certain. I cannot celebrate my six months cancer free until after it has passed. In some ways, I want to have a party, but in others I’m afraid to. What would happen if I schedule a celebration of cancer free and then the cancer came back? I just couldn’t do it.

    There is something interesting there. I’m always hedging my bets as it were. When someone asks how I’m doing, I usually say I’m doing OK. But when they ask about the cancer, I’m always hesitant. I won’t say that I’m cancer free or that this journey is over. I cannot say it but also I’m afraid to say it. I’m afraid to say that I am well and clear of cancer, because that just might make it come back. Yes, that is not rational, but there is a sense that saying I’m well with jinx me and that is not something I want either.

    For now, I’m doing OK. I cannot say that I’m well, or that I’m done treatment. I may not be in active treatment, but I’m definitely still in active recovery.  I still see a series of healthcare specialists. Rarely does a week go by when I don’t have a doctors appointment of some type or another (usually two or three appointments each week). I also have appointments at the gym twice a week. In my mind these are not optional. They are part of my treatment, part of my active recovery.

    So, for now, I’m not doing well, but I’m doing OK. I’m actively trying to recover from the various insults to my body. With each day I get a little stronger … but it will be awhile yet before I am truly well.

  • … and that’s OK

    Every time I hear someone say “and that’s OK”, I’m brought back to our couples support group. At the beginning of each group, we went around the room a few times saying something and finishing the statement with “and that’s OK”. For example, Today I’m feeling tired, and that’s OK. The exercise gives you permission to feel what you are feeling, but also provides the group an opportunity to better understand where you are at on that given day and time.

    It seems to me lately that more people are using the expression, or I’m hearing it more often. Perhaps it is just that right now I need to hear it more often. I need to remind myself that I can feel what I’m feeling, and that’s OK.

    Today we booked a camping van for our vacation … and that’s OK.
    Today I’m looking forward to being home tomorrow … and that’s OK.
    Today I had the chance to visit with a couple of friends … and that’s OK.
    This afternoon I went for a bike ride along Vancouver’s sea wall … and that’s OK.FullSizeRender

     

  • Seeking routine

    I’ve been travelling now for over a week. Prior to this trip, I went to Texas for 5 days. After this trip, I’m going on a 10 day vacation. I’m tired and I find myself craving routine rather than adventure. I feel like I’m not strong enough yet – I need more time to heal – I want to feel stronger before I really start adventuring.

    Part of what I’m feeling is that being away from home is exhausting. Each time, I come home tired, and need time to recover from my trip. I need time to get re-grounded.

    This is highlighting to me that I’m not ready to go back to school yet. I have been leaning very strongly towards putting my PhD on hold for another year. That would allow me to get a little further away from the side effects caused by chemotherapy. It would allow me a little more time to get my brain back. Mostly, it would allow me to take a deep breath and not rush back into a crazy busy life. It would give me the time to focus on healing rather than focusing on work. It is something that I didn’t really realized I needed – but I do. I need more time. I need to not feel sick, and not feel tired, and not be struggling to fit exercise into my day.

    This afternoon I adventured out a bit around Vancouver. Since I’m staying in a condo near False Creek and Granville Island, I decided to get a AquaBus pass and explore the area. On the final AquaBus ride back across the creek, someone on the boat said they were short a nickel. I had a nickel so I gave it to him. His comment was that it meant good karma points for me. It turns out, it was Kurt Browning. Someone else on the boat recognized him, and he mentioned that he was doing this show tonight – Stars on Ice. It was amusing the people he was talking to didn’t know much about it … anyways, that was my Vancouver star spotting for the afternoon. I’d have asked for a photo but the other folks had him engaged in conversation and I didn’t want to interrupt.  I can now say, I gave Kurt Browning a nickel on the ferry 🙂

     

     

     

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