BC Becky

Never Thought I'd Want to be a Breast Cancer Survivor

Category: Emotional Journey

  • A different kind of loneliness

    A friend said to me the other day “you need to get some friends who aren’t dying”. True that. The disadvantage to working from home and having free time to hike during the day is that the friends that I hang out with are those who have metastatic breast cancer, and are at some point going to die. But that isn’t really the source of this loneliness. The loneliness I’m having now has more to do with the loss of my parents.

    Hiking yesterday I was able to cry for the first time in a few weeks. I was able to figure out part of what I was feeling. My thoughts were “who is going to be proud of me now?” It is that sense that when I make a great accomplishment, that I want to share that with my parents. There is a feeling that they are proud of me. And I am feeling that loss right now. That loss of a sense that when I do something great, that my parents will be proud.

    The loneliness is in part in the knowing that I cannot just pick up the phone and Facetime with mom anymore. When dad died, I could lean on mom. But now with mom gone, I am feeling alone. I know that I have family still. I am just feeling that emptiness that goes along with grief. I cry for a bit and then the resiliency in me kicks in and I look to things I can do to reconnect to the world.

  • Lost …

    I’m at a loss for what to do with myself, or more, how I should be thinking.

    I’m working, preparing my courses which start the week after next. That is keeping me busy.

    When she allows it, I spend time with my best friend. I say that, because she has become overwhelmed with people wanting to see her, and she had been so sick that she needed someone around 24hrs a day that she didn’t get any alone time. Now that she is feeling a little better (yay to that), she is healthy enough to be alone at least for a few hours a day.

    My PhD is on hold, which is a good thing. Although I did find myself sort of writing  my discussion chapter in my head as I was hiking the other day – hiking alone. Allowing myself to gather my own thoughts.

    I am still dealing with various aspects of mom’s estate. One of my Aunt reflected on how being executor made it a lot more difficult for her to grieve. That her duties meant that she couldn’t let go or move on.

    I have missed the summer here – having spent most of it up in Ottawa. The temperatures here now are a clear indication that fall has arrived (highs mid 20s, lows in the low teens). The weather is actually pretty perfect right now.

    Scott and I did decide to try out an adventure. We are doing a Mountain Bike tour up in Marin – where Mountain Bikes were invented – on Monday (hopefully – we are awaiting confirmation).

    I just feel like I’m going through the motions but not having any emotions about it. No sadness but also no passion.

    I’m finding writing difficult – blogging difficult. I know I need to write something for my academic / professional blog but really I don’t know what to write about. Even this post is a little lost – as I don’t have complete thoughts about it – but I do feel the need to write something, just to get that writing muscle back into shape.

    And so, I’m hoping that one day soon, I shall be found … but I’m not expecting that to happen in the next month … I’m hoping it happens before I’m expected to finish off my PhD in January!

  • Yoga and ego

    I went to a yoga class on Sunday and one thing that the instructor mentioned was that one of the practices of yoga is to let go of your ego. That really struck a cord with me, as I often worry about whether or not I’m able to do a particular yoga class. I worry about whether I will look weak or dumb. I know that I should not compare myself to others in the room, but I cannot help but doing it. And that is why the idea of letting go of my ego really helped. It helped remind me that everyone in the room is in a different place, dealing with a different body. No one is judging me except myself (or if they are judging me, who cares? that is their problem not mine).

    And with that, I decided to go to a Body Flow class today. Sunday’s yoga class was a 90-minute Yin yoga class, which involved a lot of stretch poses that were held for long duration. It was a great class to ease into, and helped lose up my way too tight back. Body flow as a class that I used to find too easy. I used to find that it wasn’t really a workout – is we just a chance to stretch. That was 10 or so years ago. Not so much now. The class kicked my ass. However, I did it. I survived the entire class. I did what I could, and I didn’t watch others. I practiced the letting go of my ego, but also not comparing myself to others (which is one way in which I express my ego). I watched the instructor and I did what I could – often looking at myself in the mirror (although it was often better if I didn’t see myself!).

    I’ll wait and see how I’m feeling tomorrow before I decide if I’m going back to that class. What was nice was that the room wasn’t too crowded. If I had the energy in me, I would have gone swimming afterwards, as the timing allows for lap swim before the end of word day crowds. However, today, swimming wasn’t in the cards. The class was more than enough for me.

  • A long overdue update

    Sorry, it has been awhile since I have written anything. Life has been a little crazy – and I haven’t crashed yet – but I know it should happen. I’m in a state of no emotions right now.

    Last Saturday (a week ago), I attended an all day writing retreat with BAYS. It was truly healing. I wrote a couple of stories – or at least made a start on them. I then read the stories. This allowed me to do some emotional processing around mom’s passing. I cried a lot during that session, and I’m so thankful to the BAYS gals and the facilitator for giving me that chance to express myself. Once I get a chance to edit the stories a little, and finish writing them, I’ll share them here. That might take a bit as I have a lot on my plate right now.

    Then, last week, I attended the National Breast Cancer Coalition’s (NBCC) Project LEAD Institute. It was an intense week of education about breast cancer science – basic biology, cancer biology, immunotherapy as well as information about the different types of research studies including clinical trials and epidemiology (cohort and case-control studies). I met many really awesome advocates and scientists. I really wish I had more time to spend getting to know the people – but it was a jam packed week. I’ll write more about this when I get a chance to mentally process it.

    This week I’m going to try and focus (ya right) on preparing my classes for the fall semester. I’m teaching two courses now: Foundations in Instructional Design and Learning Technology (the first course in the program) and The Design and Instruction of Online Courses (one of the last in the program). I love watching the students grow and build confidence throughout the program.

    I also delayed my Lupron shot (hormone therapy) in order to attend Project Lead. This has led to me getting crazy headaches. I get my shot later today, which I hope means the headaches will go away!

    I find myself thinking as I write about my mother reading my blog posts – and then I realize she isn’t. It is that kind of thought that I have noticed lately. I wonder how mom will react to the different things I’m doing or posting – then I realize, that I won’t hear or see her reaction.

     

  • Alternate reality

    I feel a little like I’ve been in an alternate reality for the last three months, and I’m only slowly emerging back out of it. It has been two weeks since my mom passed away. A week and a day since I placed her urn into the grave, facing my father. That was July 7 – his birthday – a day of transition for me.

    I remember deciding not to start chemotherapy on July first, because that was Canada Day, and I didn’t want the association of chemotherapy and Canada Day. Now, the association I have is of my mother’s passing. Fireworks on Canada Day will forever remind me of sitting on my Aunt’s porch, only a few hours after mom passed, watching a personal fireworks display which we decided to do in honour of mom. She wanted us to be there, and to enjoy them.

    I’m home for a bit and I’m buried. I have forms to fill, and things to think about, plans to be made. We are hoping that in August we can do a quick push to get the house ready for sale. We cannot sell until probate clears. The house is in a good neighbourhood, on a good street, and is in reasonably good shape. We expect it to sell quickly once we can get it on the market.

    As I go through the process of deconstructing mom’s house, I am reminded of a reflection my Aunt made when she did the same with grandma’s apartment. Cleaning out involves a deconstructing of life.

    Then the question comes – what to keep and what not to keep. There are so many things that had great meaning to mom, but have no context for me. I don’t know the stories behind the objects. Some are just pretty objects. Then there are those things that I do remember – the gifts I helped dad pick out or purchase for mom. Those ones I remember.

    I’m sad to think that I am taking things that are meaningful to me, but that I won’t have anyone to pass them down to. My brother and I didn’t have kids. We have cousins with kids – so some items make sense going to them, but others it is like their history is lost. The stories behind them are gone.

    I’m thankful that I spent the last three months with mom, as I had an idea of what was happening with the house. I had a sense of which contractors she was already paying, and how much she was paying. I’m thankful that mom wrote some detailed journals. The journals were sad, but also provided hits of what she wanted and how things were going.

    I’m sad that I never told mom that I understood why she called the ambulance when dad was sick. That I feel so bad for criticizing her decision on the telephone call. I really didn’t understand what it was like to be the caregiver in that position, watching a loved one suffer … at least not until I was the one in that position.

    I am glad that on the Wednesday before she died I woke up crying. I had some to the realization that I had a finite number of mom hugs left. I went into mom’s room crying, in need of a hug. That was the best hug I have ever felt, and I will carry that with me forever.

    And so now I am home, trying to pick up some of the pieces that I left hanging when I walked away from this life to be a caregiver. My desk is stacked with papers that I need to go through and figure out.

    In other news, I got accepted into Project LEAD Institute. I’m going to spend a week in San Diego (mental note, must book flights). I will spend a week wrapping my head around all the biology and science of breast cancer, but also learn more about being an advocate and meeting some amazing women in the process. I’m looking forward to it.

  • Grief is a weird thing

    Grief is a weird thing

    Grief is weird. I am struck by waves of empathy. When my dad died, the thing that made me cry the most was the thought of what my mother was going through. It was the empathy for her that brought on waves of tears more than anything else.

    Right now, what brings on the wave of tears is the puppy dogs (not really puppies as they are 10 and 12 years old). They don’t understand why their mom isn’t coming home. They keep looking for her. They don’t understand. You can tell they are sad.

    We have started to disassemble the house – going through drawers and putting things into boxes – figuring out who wants what. It is a disassembling of two lives and that is sad. Fortunately, this is not my childhood home. My parents moved out of that home at some point while they were still in Kitimat. Then they moved here in 2010. I don’t have childhood attachments to this place.

    I do have memories.

    I was struck the day after mom dies that I no longer had to get up to make sure she had her morning pills. My morning routine was mine again. I no longer had to worry about feeding her. Everyone at the house can fend for themselves – and we have a ton of food – as family has brought us stuff. That being said, at some point we’ll want to sit down and eat together again as a family.

    On Saturday when my nephew and his wife came down, we put an extra leaf in the table so there was room for the seven of us for dinner. It was mom’s last supper, and it was wonderful that we were all together for it – laughing and enjoying the company of each other. Now the extra leave has meant more space for papers to be spread out, as we try to figure out everything that needs to be done to convert mom’s assets into “the estate of” …

    On Tuesday last week I broke down. I realized that I only had so many mom hugs left. I told mom that morning that I needed a hug and broke down in tears with her for the first time. I will forever remember that hug. We had a couple of other hugs after that, but that was my last big hug from mom. Thinking about it make me cry.

    As I write this I am staring at a painting that was done by my great uncle Lem Hogue. The painting is older than I am and hung in my childhood home. I didn’t think I wanted it, but now realize that I do. It holds memories. Interesting how things hold memories.

    2018-07-04-06-21-41

    I am thankful for the last three months. I am glad I had the support of the folks at UMB who took over my courses, and the support of my PhD supervisors who understood when I had to pause my dissertation writing to care for my mother. I’m thankful for the time I spent watching movies with her and laughing, and playing “train” (Ticket to Ride on our iPads). I am also thankful that for the last three weeks I wasn’t alone. My husband has been with me here, supporting me, helping me help my mother – and stepping in when I needed a break. Again, he is my rock (and teddy bear when I need a hug).

    And now I must go and pet the puppies – because they too are experiencing grief – or maybe they are just sleeping in the corning – having come downstairs to be with us, rather than sleeping in the bedroom where one of them still spends the night (the other now sleeps in the hallway outside of mom’s room).

    Thank you everyone for your condolences, thoughts, and prayers. It is so wonderful to see just how loved mom was. It is also wonderful to know that I have so many supportive friends in my life. Hugs to all.

  • Uncertainty

    Uncertainty

    Today’s theme is uncertainty. I don’t do uncertainty well. I never have. Cancer hasn’t really changed that.

    This morning I was uncertain about whether or not mom should go to the hospital. I felt the pressure of knowing that someday, likely soon, I will have to make that call. Fortunately, not today. My hubby highlighted that we have a phone number for the oncologist on-call, so I called. I talked to her. She said that what mom needs right now is rest. This is not unexpected. Yesterday she had cyberknife brain radiation. The biggest side effect of it is fatigue.

    I am here feeling uncertain. Uncertain about what lies in my future.

    I am uncertainty around my mother, but also around myself.

  • Progression

    Progression. It is one of the words you never want to hear. It means that cancer is growing – it is getting worse.

    For a couple of weeks now, mom has been noticing some shortness of breath. It has been getting progressively worse. We set up on oncology appointment on Monday before the schedule cyberknife radiation.

    The oncologist took one look at mom and admitted her. The immediate thought was that she might have a blood clot in her lung. Her oxygen sats were low. They put her on oxygen and gave her a couple shots of hyperin (to thin the blood in the event of a clot). They then did a chest CT.  She was feeling a little better on oxygen.

    Unfortunately, the CT results did not show a blood clot, rather they showed cancer progression. Severe progression. They were surprised at just how quickly the cancer was growing. Mom’s lungs were full of tumors. The oncologist has started her on Sutant – she cannot wait for the trial or any other medication options. There is hope that Sutant will slow the growth of tumors. Without it, mom is looking at 2-3 weeks of life. This was a shock to everyone. She was fine a few weeks ago.

    The doctors have recommended in-patient hospice (since she lives alone and the level of care she needs is increasing). We are making plans to be there.

    Yesterday, I spent most of the day crying. It is the first time since this started that I’ve been able to just let it all out. I needed it.

    I have a couple apts of my own early next week, so I won’t get there until Wednesday. Tuesday is an emotional day for me – it will represent four years since I first heard the words “you have cancer”. I don’t celebrate those words, rather I reflect upon what they mean and what this experience has meant for my life. This month I’m acutely aware of the things I did four years ago … feeling the hard spot on my left breast, going to see my family doctor, the look in her eyes when she ordered the diagnostic mammogram and ultrasound.

    And now I will add to that the words I hear from my mother. Without the Sutant, 2-3 weeks of life.

  • Processing …

    I’m trying to figure out how to process all that is happening in my life right now. I feel like I am surrounded by death. Someone I knew from support group died a couple days ago. I did not know her well, but I did know her. I remember her energy and smile from the retreat we did in February. She was well then. It reminds me of just how quick things can change. Someone can be doing relatively well on a treatment, and then the treatment stops working and the person gets sick really quickly.

    I feel like all this death is tell me that I should be doing something – and has me questioning what that something should be. I know that I make a difference on an individual level – in that I help individual people – but I don’t know what I should do on the grander level. Is making an individual difference enough for me?

    I feel like I need to do more bucket list things. I don’t want to die having money in the bank having not done the things that I want to do because I’m saving for a future that I might not have. We did our Going East bike trip because we knew that it was “now or never”, waiting for retirement was not a good idea. When I was diagnosed, I was so thankful that we had done that trip, as even now it is no longer possible.

    Work on embodied cognition claims that the human mind does not learn by storing generalizations and abstractions. It learns via experience. Human long-term memory is nearly limitless and humans store the experiences they have had in their minds. They then use these experiences to prepare for future action. They do this by consulting their previous experiences to see if any are good guides for how to act and think in the new situation. (Gee, 2014, p.76-77)

    The idea of learning as experiences also has me wanting to have more experiences. This goes back to the bucket list, and feeling the need to have more experiences. But I’m not sure what those experiences should be. All of life is an experience. I feel the need to remember to live it, as that is the only way I will get over the grief associated with loss.

    I’m still processing this … trying to figure it all out …

    Reference

    Gee, James P. Literacy and Education. Routledge, 2014. VitalBook file.

  • Mask making

    Mask making

    We were surprised at how quickly we got the call to go up to Hamilton to get mom setup for cyberknife radiation treatment. This involved the making of the mask, which were allow in to see and for me to take pictures.

    2018-05-30-14-34-37  2018-05-30-14-34-53

    The mask making process took about 15 minutes. Then we waited on as mom had an MRI and then a CT. The CT was done with the mask. The information collected was to be used to plan out the radiation treatment.

    We were surprised to get the call on Thursday that mom will have treatment on Monday. One session – which is good. The doctor said that her tumor was slightly larger than before (no idea how much is slightly), but he seem to think it wasn’t a big deal. I also left a message for the doctor yesterday about tapering mom’s steroids, which is needed for the clinical trial. I was surprised to get a phone call from the doctor this morning to discussion options.

    Now knowing the date for radiation, we called the clinical trial folks to kick that into action. The trial coordinator will talk to the doctor and put a plan in place. We are still not 100% certain that mom will get into the trial. They need to do additional analysis on the biopsy and probably need to do another biopsy in order to determine what type of pRCC she has (type 1 or type 2) as well as if her cancer is MET-activated, such that a MET-inhibitor (the trial drugs under test) might make sense. There are people on the trial who are NED – but I don’t know if they had surgery, and I don’t know how advanced their disease was before they went into the trial. We expect to hear mid-next week from the trial coordinator about the next steps.

    I really expected this process to give me a sense of “this shit is getting real”, but it hasn’t. I think I had more of that sense while watching the move Bookclub. We went to the Welland theatre, which has the nice lounge chairs. We were surprised at how busy it was – the theatre was packed. The movie was good – a comedy about older women in a book club reading 50 shades of grey. It was great to laugh. I laughed but I also couldn’t help see parallels in my parents lives. As I watched the movie, I had a sense of loss that I haven’t yet had. The sense is a grieving for the fantasy future – or an empathy for the loss of the fantasy future. My parents worked so hard that it sucks that they didn’t get a long retirement to enjoy – that long retirement of good health is a fantasy future that we all have – but it isn’t a reality for most. It reminds me to get stronger and take advantage of my health while I have it.

    I’m also struggling a little because this time, mom isn’t better when I’m leaving. Last time, she was so sick when I got here, that by the time I left she was doing infinitely better. This time, when I arrived she was doing well, but now is struggling more – struggling with her breathing – waiting for calls from the palliative care doctor. Hopefully we can see her today!

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