BC Becky

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

Category: Caregiving

  • Can I handle the emotional hit associated with losing more friends?

    Can I handle the emotional hit associated with losing more friends?

    Back on July 6, 2014 — the day before I started chemotherapy – I wrote about my fears with getting to know others who might one day die from breast cancer.

    To join a cancer community means to admit that I have cancer – but there is more to it than that – it is the fear of joining a community and then losing people in that community. I’m OK with admitting I have cancer, but I’m not OK with admitting that it is something that might one day kill me. I’m afraid that if I develop solid friendships with others who have cancer, that I’ll lose them. I don’t want to have to deal with the death of a good friend – and so, I hesitate. I hesitate to reach out too much to others who are also going through this experience – not because I don’t want to meet these people or get to know them – just that I don’t want to get to know them and then lose them.

    Joining the cancer blogosphere, July 6, 2014

    This is weighing on me today. Since that time I have made many good friends within the breast cancer community. In the last year, I also lost a couple of those friends. Their loss was hard. It was hard to watch them go from energetic powerful women, whom I hiked with regularly – to someone who is struggling to take a breath or a step. But I am glad for the time I did have with them. They showed me how to live.

    After the loss of the last year, I find myself hesitant again. Can I handle the emotional hit associated with losing more friends? And yet, I don’t have a choice. I have made many friends who share being diagnosed as young women (under 45). Statistically, we cannot all survive this disease. It will happen again. We will have others within my community of friends who will be diagnosed with metastatic breast cancer .. and one day, we will lose them too.

    As I reach out to friends who are going through the scary process of biopsies of suspicious lumps, I am scared for them. I am scared that they will hear that the cancer is back – or that is has spread – that they will have to go through treatment again, or treatment for the rest of their shortened lives. I cannot help but hesitate and ask myself – do I want to through this again? Do I want to become closer to those who I know I will lose? But I cannot step away. I need to provide support – whatever little support that may be – often it is just thoughts. I short text or email saying “I am thinking of you today”, so they know that they are not alone — but also that I see you – I am a witness to your struggles.

    I think back to a recent memorial service that I attended. I heard so many great stories of the power that was the person going through metastatic breast cancer, and loving her kids and family. I heard stories of her strength. But I felt like they only saw one side of her. I also saw a different side. I saw not just her strength but her struggles. I held a space where she could take away the shield she put up to help those around her — a space where she could cry and express her frustrations over what the disease was doing to her. It is a particular hug in my kitchen that I remember the most. I remember the smiles while hiking, but also the tears while letting down the barriers that she put up to protect those around her. I hold that memory close.

    So I ask myself, can I go through this again? and then I ask myself, how can I not?

    Feature image by Aron Visuals on Unsplash

  • Writing

    I realized today, while having a writing session with my academic supervisor, that I haven’t been writing lately. Not for this blog, but also not for any of my other blogs. It seems that one thing that happens to me when I am grieving is that I stop writing – or more, that I lose the inspiration to write.

    I noted it most profoundly shortly after my mother died. I realized that I had counted on her reading my blog, so I always knew that she was there.

    With Lori, she didn’t read my blog that often – mostly when it crossed her Facebook feed, but we talked. When we didn’t actually talk, we texted. When she was well enough to hike, we would spend hours talking. I heard the same stories over and over. I shared the same stories over and over. We also talked about life and what was bugging us that day. And we talked about death. We talked about how she was preparing for death, and her desire to get the meds for the end-of-life-options act, not necessarily so that she could use them, but to reduce her anxiety about dying. To know that she could use them if she wanted to. In the end, it didn’t come to that. She passed quickly in the arms of her oldest son. She often told me that they grew up together – she was 19 when she had him – she worked two jobs while going to college just so that they could live.

    This morning, during the writing session, I was forced to sit in front of my computer and just write. I didn’t necessarily feel like I had read enough, but I needed to just sit and write. It turns out that I had a lot to say. I went back to some blog posts I had written before mom was sick, while I was working on my dissertation. There were several reflective posts that fit into the part of the dissertation chapter that I’m currently working on. It made me realize that I may be further along than I thought, but also that I do a lot of my thinking while writing, and by not writing, I’m not processing things.

    I’m not feeling overwhelmingly sad, which is something that I was afraid was going to happen. I’m doing lots of grieving in community – in that I’m grieving with different groups of friends and different times, and each time I go through this grieving in community process I feel better. I am so glad to be part of such an amazingly supportive community. But, since the grieving has stopped me from writing, it has in some ways stopped me from processing.

    And so, I’m going to try to spend more time writing – more time blogging – more time writing in this reflective way. I need to start ‘seeing’ blog posts again. It is like I’ve lost my muse, and I no longer see the world through the lens of blog posts – or more, that I’m not seeing blog posts from the everyday things that are happening in my life.

    I’m going to try to keep writing. I’m going to watch for Marie’s weekly writing prompt and see if that inspires me, but also I’m going to look for writing prompts in the other things that I do. I have several things to think about regarding blogging, so that is a start.

    Here is to getting back on the metaphorical horse, and getting back to writing again. I miss the connection I have to my readers, even when I don’t know who is actually reading it. There is still a sense of connection there. Interesting.

  • Powerful, tearful, and memorable weekend at Commonweal

    When Lori mentioned to me that the MBC (Metastatic Breast Cancer) weekend at Commonweal – two and half day retreat for young (those diagnosed with breast cancer under 45) women with metastatic breast cancer – had space that was not going to be filled, I found myself wondering if they would accept me to join them even though I didn’t have Mets. I would not take the spot of anyone with Mets, but if a spot was available it was exactly what I needed.

    Fortunately, we were able to make it all work out. I was able to drive 2 people who would have otherwise had a challenge to get there, or would not have been able to go at all. In that way I was helping the community.

    The weekend turned out to be exactly what I needed. It was special on so many levels. It was special because I got to spend some time having a variety of experiences with several of my friends – moments that I will cherish and take with me forever. I have cemented the visual but also the feeling of love into my mind. That was a gift.

    We cried and laughed and cried some more … we did a lot of crying. I learned that grief tears are good for your skin. They are certainly good for your soul.

    The other thing that worked well for me was that I was able to do some specific grieving. I was able to participate in a grief ritual that helped me address some of the grief over the loss of my mother, but also the grief know that I will lose my friends.

    There was another point in the weekend, where myself and the photographer headed out to the chapel. I wanted to get some photos taken of me laying down in the chapel looking at the ceiling and contemplating. I had brought one of my mothers shall/wraps to wear. When I lay down, the photographer took the front ends of the shawl and crossed them over my chest says “your mother is giving you a hug now”.  That was a real gift. Now anytime I wear that shall I will feel like I’m getting a hug from mom.

    Unfortunately, I also discovered that my left hand and arm are swelling again. It seems that for some reason my lymphedema has returned. I haven’t been swimming much lately, which might be a contributing factor, but it might not be. I have no idea. Anyways, I’m back to wearing a compression sleeve to keep the swelling down. I can go back in the pool started Wednesday (2 weeks after my eye procedure), so I will need to add regular swims to my priority list.

  • 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.

  • 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.

  • It was so fast … Kathleen Hogue (nee Kish) passed July 1, 2018

    Kathleen Hogue

    It happened very quickly. Mom was not in pain. In the morning, her breathing had been especially strained. When the nurse came, she gave a few more meds – ones that I could inject into a subcutaneous catheter. They were mostly to help with anxiety.

    We had a lovely Saturday, with visits from her grandkids as well as my brother and I and our spouses. We shared a good meal. We toasted to life.

    We were on our way to a Canada day party (or trying to get mom there), when she passed. She really wanted to go to the party. Everyone agreed that if she wanted to go, we would to everything we could to make it happen.

    With a lot of moving parts (thanks to my hubby), we managed to get mom in the car and get her on oxygen in the car, but she was very anxious. She said the car had to move, so I drove around the block. In that time, she found the seat belt too restrictive. I decided that we were not going to make it to my aunts. I told my mom “I’m making the executive decision that we won’t go”. She said OK (I think she just wanted to be back in the house at that point), but she also said “you all go” .. in that she wanted us (me, my brother, our spouses) to go to the party and enjoy the Canada Day fireworks.

    We helped mom transfer from the car to the chair. Her last words were “let me do it” .. in that she didn’t want our help, she wanted to make the transfer herself. Once in the chair, on home oxygen, we wheeled her directly in to the house. I noticed then that her eyes were looking up and she was going in and out of consciousness. I said “call 911” – and my hubby did. While talking to the 911 operator, we timed her breaths at once every 20 seconds. It was like she was gasping for air. When the fire trucks arrived (they usually arrive before the paramedics), I showed them the DNR – which we had taped to the fridge. One of them went into the house to assess mom.

    When the paramedics arrived, there was a confirmation of the signed DNR. That is the first time I heard the words “I’m not detecting a pulse”. The paramedics took over, hooked her up to a defibrillator and validated that she had no pulse. There was a check again to validate DNR. Confirmation of the paperwork, but also confirmation from her substituted decision maker (me). All was confirmed. She had passed away.

    The paramedics were amazing. They carried her upstairs and put her into bed. They kept asking if we needed anything. They gave us water and offered to make tea. And they stayed waiting for the police – until they got a new call and were needed elsewhere. The paramedics didn’t know what the next step was, they just knew that they were required to call the police and wait as long as they could. The police came in and confirmed the situation of her passing. Once that was confirmed, the police officer checked with mom’s family doctor to confirm her diagnosis. Then the information was passed to the coroner, who signed off, and called the funeral home. I really had no idea how the process worked.

    At about 6:20 pm, mom passed from this world into the next. I hope that she learns the answer to her question “Will Allan [dad] wear glasses in heaven?”. We are thankful that her passing was quick, and that she was in very little pain or distress. Rest in peace mom … we love you.

  • Fatigue …

    The Cyberknife brain radiation certainly made mom tired. We were expecting it, at least partially, because she was tired going into it and her body is fighting off the cancer.

    Monday we had an oncologist appointment. Mom had a bunch of different symptoms and we could not tell what might be cause by Sutent (sunitinib – the targetted therapy), brain radiation, or cancer progression. In addition, she has also been on a steroid which also causes side effects. Unfortunately, the oncologist believes that at least some of her symptoms are caused by cancer progression. We cannot know for certain yet, but that was what he believed he was seeing.

    The next steps are really going to depend on how mom reacts to the second dose of Sutent The oncologist did agree to order a CT for the next scheduled visit, which is in three weeks. This early on, the best that we can hope for is for the Sutent to stop the progression, and then after a couple of months it may actually shrink tumors. However, if the cancer did indeed progress this last week, then it likely means that the Sutent isn’t working.

    Her cancer could progress quickly, or it could take a pause and not progress. We really won’t know, but likely will have an idea by sometime next week. She starts her second cycle of Sutent tomorrow. If it doesn’t work, then given the extent of her lung mets, her health will fade quickly.

    We met with the palliative care doctor today, to better manage mom’s pain – here, the oncologist defers all pain management to palliative care. In additional, all end-of-life is managed by palliative care (or if we choose, in-patient hospice).  We had a chance to talk over a few things with the doctor, but also learned that we need to go back to mom’s care coordinator to get a better sense of options. The care coordinator is the one responsible for things like hospice beds and other resources for home care support. As mom approaches end-of-life, if not in hospice, they can provide some nursing services, but likely not 24-hour nursing. In reality, a lot of the care falls on the family.

    We are at the moment hoping for the best, but planning for the worst … the biggest thing is ensuring that mom isn’t in pain.

    I’m doing OK for now. We got the pool up and running (thank you hubby – it was no small feat). So now, I can enjoy an early evening swim.

  • Annoyed

    I wrote this on Sunday, June 24th – one week before mom passed away. I saved it as private, because I needed to write it, but I also wasn’t willing to share it while mom was alive. I didn’t want to be the nay-sayer, or the one in the family who did not have a “positive attitude” about what was happening. What I was seeing was so different from what the doctors where telling her (and us while we were with her). 

    I’m annoyed at doctors that set unrealistic expectations. After the cyberknife radiation, the doctor said that mom needed to follow up with an MRI in 2 months, then she will see him every 3 months for follow up. The problem is, the lungs are going to kill her well before she gets to the every 3 month follow ups. I will be surprised if she makes it to the 2 month follow up – and the brain mets will be the least of her worries.

    I’m also now thinking we need to re-assess for hospice.

    I awoke at 4:30am because mom was coughing. I’m not sure how long she had been coughing but it was constant. I have the O2 at level 3. It had been at level 4 for a lot of the day. I got up to her cough and gave her a hydromorphone – the narcotic helps suppress the cough. It also helps her sleep.

    I’m annoyed at the home hospice doctors. They say they are available but when you call on the weekend they are not. They seem to take way too long to get back to me. And I know this is a problem because it happened with dad too. When the time comes that they are really needed, they don’t seem to answer the call. This again is a reason for moving to hospice care – in-patient hospice care.

    I am struggling with the length of time this is going to take. I can handle a few weeks, but if this drags on for months I’m going to struggle. I’m not enough of a caregiver to handle this month after month – in part because in order to do this I need to be living here – and not at home in California. Home is a long way away.

    I am thankful for the time I have spent here over the last couple of months – since mom’s diagnosis. We have spent some good time together – something that I will never regret. But as she gets sicker, this all gets harder. When I arrived in April, she wasn’t well. I was able to nurse / nurture her back into health. That isn’t happening this time. This time, she is getting sicker.

    I read the pathology report from her hospitalization. It said innumerable lung mets, and gave examples of sizes that were horrifying.

    I think we need to ask what is the best and worst outcomes of the Sutant. I need to have a doctor be truthful about expectations. She needs to hear it from someone … it is their responsibility to say it, not mine!

  • 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.

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