BC Becky

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

Author: Becky

  • 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.

  • Weirdness …

    I cannot describe it any other way than weirdness. On Friday we went up to Hamilton again in order for mom to have a repeat brain MRI. We are going to try again this Friday for the cyberknife treatment. It was weird watching the MRI tech place the IV in mom prior to the MRI. My only other experience with that involved me being the one sitting in the chair getting stuck with the IV.

    It appears that mom is tolerating the Sutant well. The Sutant is clearly doing something, and we think it is helping mom’s lungs, as she seems to be doing a lot better with her breathing – she even forgot to turn on the oxygen when we went for a walk the other day.

    Last weekend I had the opportunity to spend the weekend white water kayaking with a bunch of amazing women. I went with a group from Bay Area Young Survivors, and the group that put on the weekend was the California  Womens Watersport Collective – who provided an amazing group of guides that made us feel comfortable on the water as we stretched our comfort zones. I was super amazed at how well I was able to do in the boat. The last time I was in a whitewater kayak was 1999, and that was in a swimming pool! (taking lessons to help prepare us for our sea kayaking adventure in Gwaii Haanas.

    Tuesday (June 12) also presented the fourth year anniversary of my diagnosis. It is hard to believe that was only four years ago, because it feels like a lifetime ago – and yet, with the experiences I’m sharing with my mother bring me right back to the experiences I had at diagnosis … remembering my first MRI. It is weird the way life takes you back in circles in ways that you never expected.

    Anyways, this post is a series of ideas and thoughts since I haven’t blogged in a while … I’m in Welland now with mom, and things are going OK. I spent the afternoon with a friend and my hubby stand up paddle boarding and walking.

  • 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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