BC Becky

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

Year: 2015

  • 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 🙂

     

     

     

  • Cues and context

    At the conference last month in Texas, my cue was the name. If someone called me Becky, I knew that they had read at least part of this blog – if they called me Rebecca they knew me in a more professional context. Calling me Becky signalled that the person knew at least part of my story. They had context. I thought I blogged about how the name was a signal for me – but I cannot seem to find it on either blog, so I may not have actually written it.

    Over last weekend in Ottawa, I attended part of the Canadian Unitarian Council’s Annual Conference and Meeting. Many people there knew my story. Since I go by Becky with my church friends, the name was not a signal. Instead the signal was my hair. If someone said, “wow you have lots of hair” usually following by a deep heartfelt hug, then I knew they knew my story. A funny aside, someone commented that it was no longer socially acceptable to rub my head, which made me giggle. If they said “you cut your hair” then it was clear that they did not know. This happened a few times. At least once, when someone asked me how things were going in California, I said that “I had some health issues”. I told others “I had breast cancer”. I found myself playing with different ways of approaching the topic, but for the most part, I just accepted heartfelt hugs and smiled. I certainly did not go under hugged on this trip.

    One of the biggest challenges for me on this trip is the sense that I people are “happy to see me well” and “glad to see that I’m strong”. The problem is that I don’t feel that well or that strong. I found that I was surrounding myself with visits, but at the same time I exhausted myself. I had to remind myself that I’m still recovering, that I’m not there yet. It doesn’t help that my neuropathy in my feet is acting up, as is some tendonitis in my shoulder. So my body is providing a constant reminder to me that I need to take more time to heal. I need to rebuild my strength. It isn’t something that comes back overnight – just because treatment is over, doesn’t mean that I’m magically better, magically stronger. These things take time, and I need to remember to give myself that time.

    I’ve been gone for a week, and as Spirit of the West is apt to say, “I need home for a rest, take me home…”

     

  • Where do I go from here?

    Yesterday and the day before were filled with emotions, hugs, and visits with so many people.

    One of the things that happened yesterday was a meeting with my PhD thesis committee and the director of the PhD program. I presented a quick overview of my project (from my proposal seminar) and an update on the data that I had. I was disappointed that one of my committee members didn’t attend. The meeting was setup over a month ago, so I feel a little disrespected.

    After much discussion, the conclusion of my committee and the program director was that I do not have enough data to write a dissertation. The path forward at uOttawa has two options:

    Option 1 involves a change of methodology – from Educational design research to Case Study – and would require doing another round of interviews, which would require ethics approval from two ethics boards. It would involve a lot of reading on this new methodology, and preparation of new interviews / surveys to align with the new methodology.

    Option 2 involves a new project. I would not need to do comprehensive exams or a formal proposal seminar as I have already met those requirements; however, I would need to write some form of proposal that my committee agreed to. In addition, I’d need to change supervisors (my supervisor is retiring) and form a committee that better aligns with the new project.

    An additional option would be that I transfer universities. That, however, would involve having to re-do comprehensive exams and the equivalent of a proposal seminar as well as additional coursework. Changing universities would be a three year commitment and would be expensive (since I’m on full scholarship at uOttawa).

    My issue now is to figure how I want to be spending my time. I was ready to commit to writing a dissertation based upon the data I had. I figured that if I focused on it for eight month, I could finish before my scholarship ran out. However, that is not an option.

    My challenge now is to figure out what I want to do? How do I want to be spending my time? I may very well look at taking a second year of medical leave, giving myself more time to figure out where I want to go. A second year of medical leave would mean that option 1 is dead, and option 2 is the path that I would be taking. It would give me some more time to explore where I want to go, and to self-study new methodologies, so that when I do go back I can “hit the ground running” so to speak.

    One thing that has changed over the last year is what I value in research – my axiology. I began my PhD journey as a very pragmatic researcher. I am now much more interested in participatory research. I am intrigued by autoethnography and collaborative ethnography. I value innovation – that is something that has not changed. It is, however, something that is not seen as research at uOttawa.

    I also do not want a plan forward that requires that I fly to Ottawa on a regular basis (once / semester is OK, but once/month is asking a lot). I enjoy my visits to Ottawa, but the travel takes a lot of energy. It is expensive from both a financial and physical health perspective. In changing supervisors, I would need to have a supervisor that is willing to supervise remotely. uOttawa isn’t the best place for remote supervision. It has been suggested several times that I look into transferring to a school close by where I live. For me, the location of the school shouldn’t matter. I should be able to do my research from anywhere in the world. There is a philosophical distance that may be harder to surmount than the physical distance.

    An so, part of the reason for the meeting yesterday was to help determine what my options were for paths forward. Although the path that I wanted (I guess I didn’t even realize I wanted it) is not a valid path, at least I now have some clarity on that. I know better what my options are, I just need to decide what I want to do about it.

  • A picture is worth 1000 words

    A picture is worth 1000 words … or so they say.

    I recently participated in an interview for an academic study on care and vulnerability among academics. When asked about where I draw the line with what I share, two things came to mind. First was in areas around sexuality, and second was with pictures of my breasts. I’ve struggled with both, in part because I think there are things that need to be said, and would be valuable for others going through breast cancer to hear – but there are still limits to what even I am willing to share publicly on the internet.

    That being said, a friend is about to go through the same kind of reconstruction surgery that I went through. When we talked about it, I was able to show her some photos that were on my phone. These were a great help to her. She was comforted by my success stories, as most of what she had seen were the horror stories.

    When I was at the ed tech conference in Texas a couple weeks ago, there were a few people that I showed pictures to. Again, this was in part to help them better understand what was involved. It was a sharing that helped to deepen our relationship.

    I have struggled with how I could share pictures in a way that was not so public as this site, but would allow me to still share them with people who want to see them. I thought about putting them into an ebook behind a paywall – so only those who paid for them would see them, but that didn’t really seem to address my concern. Part of it is, I want to know who has seen them. Even if the person is a complete stranger, I still want to know who they are. It is because the sharing of such pictures is sharing an intimacy (note that the pictures do not involve face or groin (except one or two) – that is intentional. They show the scars and the wounds in a more objective manner. They help the viewer better appreciate what the surgeries entailed. They help the viewers better prepare (or empathize). But they also serve to deepen the relationship between me and the person viewing the images.

    With that said, if you are reading my blog for whatever reason, and you do want to see the pictures of my wounds (photos taken almost daily from my first surgery through to mostly healing of my scars), then please email me (rhogue@pobox.com). I will not post a link here. I will not post the password here. I will, however, share with those who read this blog and want to know me on a deeper level – or who want to better understand the outcomes of the surgery that I had. Just send me a note to let me know a little something about you, so that I know I’m not sharing my photos with someone who will publicly display them or exploit them in any way. Because, sometimes a picture (or in this case a series of pictures) is worth more than 1000 words.

  • Today I miss my nipples

    When you are finished with the acute treatment for breast cancer, the doctors talk about the difficult time you will have. They talk about how it is related to all the attention you get from your care providers during the acute treatment stage. Then suddenly, you are set free and feel somewhat abandoned. I definitely felt that way. However, I think that was the easy part. I found other healthcare providers to help keep me on track – I was never really left without them – I just see different people now. So instead of weekly visits with the infusion nurses, I have weekly visits with a physiotherapist.

    So, although abandonment is part of what creates the down/depressions after acute treatment, that is only a small part of it. Our healthcare providers are missing something big here – in that they are looking at the problem from a healthcare provider centric view and not from a patient point of view. From their view, they see patients feeling abandoned. They don’t seen the internal struggles that patients are facing.

    Early in my cancer journey, I wrote asking How does one prepare to lose a body part? In truth, you prepare by trying to be strong when you go into surgery, but also giving yourself permission not to be. Since I did chemotherapy first, I had a lot of time to prepare myself for the surgery. By the time surgery came, it wasn’t scary anymore. I knew what to expect. I had done my research. I was OK with it all.

    What I couldn’t prepare for was the sense of loss that comes with losing a body part. It doesn’t come right away. During acute treatment you are focused on getting done what needs to be done and staying alive. After that, you become focused on regaining your strength, and on letting the physical wounds heal. It isn’t until you start to reclaim portions of your old life that the loss really starts to sink in. It is then that you really start to internalize what has changed.

    So for me, today, I miss my nipples. I had a nipple sparing bilateral mastectomy with immediate DIEP flap reconstruction. That means, that I actually have my nipples. When I look in the mirror, they look like my nipples (mostly – they are scared and have faded and flattened). But they are also dead nipples. My reconstructed breasts have no sensation. My nipples no longer react to stimulation – they are dead inside – they only exist for cosmetic purposes. Don’t get me wrong, I’m thankful to have them – and to be able to look in the mirror and see my nipples and not some empty stomach tissue or some reconstruction of a nipple – but I am sad at the loss of sensation. I miss it. And it is this type of loss that doesn’t really sink in until you start reclaiming your old life. Until things start to get back to normal, and then you discover some little (or not so little) thing that cancer has taken away from you. And that is what makes survivorship so hard. It isn’t the abandonment from your doctors, it is those times when you realize just how much you have lost.

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