BC Becky

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

Tag: support groups

  • The mixed blessings of support groups

    I have found that support groups are a mixed blessing. I have been going to two face-to-face groups, but also have ‘connected’ support groups on Facebook. The face-to-face and online groups provide different kinds of support, and I find that I need both.

    The online groups provide day-to-day support and often give me quick answers to questions. These are not necessarily the answers to the types of questions you get from your doctors, but rather more real-life suggestions that make it easier to deal with the unknown and help better prepare for what is to come. For example, it never would have occurred to me to rent a hospital bed for a month, to make sleeping after surgery easier. Many people sleep in loungers, and others use wedge pillows. The general problem is that for the first few days after surgery, the ability to sleep horizontal is a challenge. I found this an issue with my port, so I anticipate it to be worse with surgery. So, now we are looking into renting a fully electric hospital bed for a month – which is truly the best of all worlds – they deliver and pick-up, and insurance might actually cover at least part of the cost. It is a much better solution than a lounger (which we don’t need), and will be cheaper too.

    I’ve gone to two face-to-face groups, one for those who are newly diagnosed and in treatment, and another for young people with breast cancer. As I’m an extrovert and know very few people in the area, it is a challenge for me to get enough face-time with real people. So, face-to-face support groups give me energy – they feed me. However, timing is a challenge. The groups meet either Saturday afternoon or a weekday evening. The Saturday afternoon is often better, but as we have discovered camping to be a blessing, we shall try to do more of it, making me miss Saturday afternoon groups. Evening groups are a challenge (at least while on AC chemo) as I cannot drive home afterwards – so I need someone to come and sit for two hours (or longer) while I am in group, as I cannot guarantee that I will be able to drive home afterwards. The other challenge with the evening groups is that being around people gives me energy – then I have a hard time winding down and sleeping afterwards. Given that since chemo I have typically been in bed around 9 – 9:30, groups that often run past 9:30 and are a half hour drive home, making the drive and sleeping difficult.

    Then there is the group itself. In the newly diagnosed and in-treatment group, I’m often the youngest person there. I have a young person cancer, so I often have one of the more aggressive stories (although not always – we have lots of rareness in our group). More interestingly, I can relate to the older women better on a professional level, as many of them are self-employed or professionals.

    The young cancer group is full of inspiring women, but their challenges are different and they often have more aggressive cancers. It is difficult to hear women with metastatic disease speak of their journeys as they learn to accept and not fear death and those with aggressive cancers whose prognosis is in the ‘single digits’. This is much more the case with young women with breast cancer, as young cancers tend to be more aggressive in nature. I’m also one of the oldest people in the group – as I sit at that boundary. Young breast cancer is considered “under 45”, and I’m 43. So I am definitely at the edge. I’m also in a very different place professionally. Given that this is the group that meets in the evening, I find it especially difficult. Last night I came home charged with energy from being around people, but also struggling with depression as the reality of my journey sinks in (I’m thankful I’ll be seeing the cancer psychiatrist tomorrow).

    With this, I’ve come to a difficult decision not to attend the face-to-face young persons groups anymore (at least not for the time being). Although there are many encouraging women in the group, it does not leave me with the feelings I need. It may be doing me more harm than good. I will stay connected with the women through the Facebook group, as I find it a good virtual group, but the face-to-face is just too challenging (it is also the group that meets in the evenings and often runs overtime, so it is too logistically and physically demanding for me at the moment).

    I will make every effort I can to make the Saturday afternoon group. It has been a very supportive group. It is smaller, and rarely runs overtime. Since the group is smaller, we have more time to share and more time to ask questions, so it provides better support for me. I come home from the group feeling energized and generally in a better spirits. So, it is the group that is feeding what I need and not what I don’t. I’m also hoping we can get a Facebook group going, as I’d love the opportunity to connect with these women more outside of the 90-minutes once per week that we meet.

  • So I did it, but I need your help

    So, I did it, I signed myself up for the Avon Walk. This is a fundraising event that involves walking 39.3 miles over two days. The first day you walk a marathon, and the second day you walk a half marathon. The walk takes place through the city streets – in my case, it will be through the streets of San Francisco. As this is a fundraising walk, I need your help. In order to participate I need to raise at least $1800. So, I’m asking for your help. My fundraising page is:  http://info.avonfoundation.org/goto/rjhogue. I may seem like a cliche statement, but every little bit helps.

    I really debated signing up for the walk. I don’t generally like these large fundraiser event type things – but I was motivated by several things. First, one of the ladies in one of my support groups spoke very highly of it. She said she found a lot of encouragement in the crowds that gathered to cheer them on. It as an emotional but very uplifting experience, and that takes on a whole new meaning when you are walking as a warrior/survivor.

    I looked into where the money went. I’m lucky to be located near Stanford, a center for excellence in breast cancer treatment. It is where a lot of the clinical trials happen. It is one of the few universities in the US that set the standards of treatment for the rest of the country. But I’ve also been lucky to be near Bay Area Women’s Cancer Connections (BCC), an organization that has provided me with a lot of support. There are lots of free resources that have been made available to me. I’m also very aware of a lot of women who are cancer poor. Women who have to make treatment decision based upon their finances. And I don’t even see the women who don’t get screening done or who have very limited access to healthcare. It is a real problem here – and so events like the Avon Walk providing funding for research, they also provide resources for women who could not otherwise afford them.

    The final reason I decided to do it (other than the cool opportunity to see San Francisco) was the timing of the walk itself. I’ve started to look beyond treatment – I’m making the move to look ahead in my life. The walk will come at a time when I should have completed the major treatment phases of breast cancer (chemo and surgery). There is some hope that after surgery I get declared “NED” (no evidence of disease). The treatment doesn’t stop there, as I’ll be on hormone blocking medications for 10-years – but I should be disease free. As such, the walk will mark a transition – from warrior to survivor – and that is something significant and should be celebrated.

    As I write this, it is day three of my third chemo cycle. I had a great visit with a friend today which did a good job of distracting me from how awful I feel on day 3. Last cycle I also felt awful on day 4, so I have a reiki appointment which will hopefully fill me with healing energy and get me through this cycle. I’m truly hoping that the cumulative effect doesn’t mean I feel awful on day 5! Only one more cycle of AC to go (yay) – and my oncologist promises that T will be better! Going out today gave me an excuse to dress up and try out the stylin’ new hat and earrings my mom sent! I am amused at how much I like to dress up when I go out now – that is so not like the old me.

    We are going camping on Saturday night. We have not been camping yet this summer – which is so unlike us. Having a temporary disability permit has been a life saver for me. It has meant that I can run errands even when my energy is low, but it also means we can go camping this weekend. The California State parks set aside certain sites that can only be used by someone with a placard. So even if all the other sites are full, no one else is permitted to use them. This meant that when I was looking for a site on Monday, there was one still available for Saturday. It is a real savior to be able to go camping at the last minute, as there was no way we could have planned in advance how I would be feeling. Honestly, I’m not 100% certain I’ll actually be up for it – but I figure, if nothing else I can spend an afternoon reading a book in my camp chair surrounded by ancient trees – sounds pretty peaceful to me!

     

  • Transitions matter

    Talking to my friend Stacey this morning, and reflecting on the BCC (Bay Area Women’s Cancer Connections) Young Women’s Group for those in treatment and post treatment, I see a need for some form of “graduation ceremony” or “bridging ceremony” .

    At the BCC Young Women’s group, what I noticed was a very large group, where many close connections had been made. But also, the group was too big for those of us who were new. It was a bit intimidating, but also in order to give each person the 10-15 minutes they needed the group ran over 2.5 hours – which if you are actively in chemo treatment, is just plain exhausting. I had to choose not to attend because I couldn’t bare the thought of being there that long right after treatment.

    I struggle with the group being both “in treatment” and “post treatment” because they have another group which is a survivorship group. But what I saw was that with young women the actual post treatment is a long time. Treatment isn’t just surgery, chemo, rads .. it can involve several more surgeries and lots of follow ups. It is almost like they need three groups, one for those of us “in treatment” – cancer warriors as I like to refer to us. But I also see the need for another group to help those who have moved beyond that “in treatment” stage who are still fighting the issues of reoccurrence and addition proactive surgeries. So I see the need for the group, but also I see the need for people to make the transition to other groups, post-treatment, and survivorship, but there is no mechanism that I see to encourage that transition. Without that gentle ‘kick’ to move from one group to the next, the initial group doesn’t provide the support it needs to provide to the young women who are newly navigating the experience.

    In my discussions with Stacey this morning, I heard her desire to not be seen as “cancer Stacey”, but rather some new “Stacey” who isn’t first and foremost someone surviving Cancer. Again, I see this as a huge transition. It is a graduation of sorts. Not all women make that transition at particular time, but at some point the transition usually happens. For me personally, I’m looking to the Avon Walk and next fall when I formally re-emerge in into my thesis process as that transition. In the spring, I will begin by attending academic conferences, where I’ll still clearly be Cancer-Becky – as I’ll be hairless, and I may even be presenting on topics relating to being a breast cancer blogger. But in the fall, I will be writing my dissertation, and reporting on my life before cancer. I won’t be writing as “cancer-Becky” I’ll be writing as Ed-Tech Rebecca.

    Similar to working through the PhD process, it is important to celebrate the transition we make. Some of them are easily identified (e.g. passing comprehensive exams, getting your proposal accepted, the last day of chemo!). Others are more mental transitions, that take time … but when we are ready to self-identify and make those transitions, it would be so much easier if there were a more formal way to make that declaration – to celebrate the change.

    So Stacey .. if you are ready to make the transition, how do you want to celebrate it?

  • Revising my stretch goals

    When the oncologist told me not to wait to have surgery – that I should plan to have surgery 2-4 week after chemo. His words were “don’t waste the chemo by waiting”, I had to make a choice – triathlon after chemo or Hawaii. It was a pretty easy choice. The triathlon was proving to be challenging, as I wasn’t finding any newbie friendly events. So, I revised my plan.

    One of the ladies at one of my support groups had walked in the Avon Walk for Breast Cancer. She was very inspired by the experience. I have known others who have done similar walk’s in Ottawa (known as the Weekend to End Women’s Cancers). I wasn’t so sure about the whole idea. Does the money go someplace useful? In looking into here, the answer is actually yes. Without socialized medicine, much of the money goes to provide programs for women who otherwise would not afford screening or whose treatment options would be limited by their finances rather than their choice. I am lucky, in that when I was diagnosed, we were in a good financial position, but also we have decent medical insurance. As much as we fight occasionally to get prescriptions covered, I’ve never had to make a treatment decision based upon finances. I am very lucky, and many other women are not. So, I’ve been seriously considering the Avon Walk … so much so that I will probably sign up this weekend! I’m just waiting for some answers to questions relating to international donations.

    The next Avon Walk in San Francisco is July 11-12, 2015. The other coolness factor about this is just walking around San Francisco. The walk will necessary involve crossing the Golden Gate bridge at least once. Last year’s walk involved walking through Sausalito – which always reminds me of Starfleet Academy as well as walking through several interesting areas of San Francisco! For me, this event will come at a time of transition. I will be transitioning from ‘in-treatment’ to ‘survivorship’. The walk provides a great symbolic activity, and I can visualize myself walking through the finish line as if it were a bridging ceremony marking the end of treatment and all the healing from the trauma associated with treatment, to begin my life as a breast cancer survivor.

    To help me start training for the walk, I’ve set a new post-chemo stretch goal of being able to do the hike down from the summit of Haleakalā on Maui. The hiking trail is 18.1km. That is double the furthest distance I’ve ever walked. It also involves altitude, so I will need to get in some altitude training.

    Screen Shot 2014-08-01 at 21.58.21To help with the altitude training, we have booked our anniversary weekend (September 28) trip up to Yosemite National Park. Yosemite has some nice high altitude hiking trails, so I should be able to test out my abilities for hiking at altitude that weekend. It should also be a lot nicer weather in the fall – as Yosemite in the summer is darn hot! We may do an additional Yosemite trip (or Tahoe) to celebrate the end of chemo (November 17) with one more weekend of higher altitude hikes before we go to Hawaii. We shall see. It seems like a lot of time away, but awesome healing time, spent largely in the wilderness, so definitely worth it 🙂

    So there you go, my new stretch goals. Right now, I feel that they are very achievable!

     

  • Moving forward

    I now have a surgery date – December 17th. It isn’t exactly the date I wanted, but it is something that I can work with. With that in place, I can now start to move forward with my life.

    Over the last week I have started to move beyond my diagnosis. My life is becoming less about cancer-Becky and I am looking at a re-emergence as academic-Rebecca. I have talked to my supervisor and put a plan in place that will allow me to move forward with my PhD. I’ve talked to the very supportive folks at the Department of Family Medicine who are also onboard to help me move forward. I am thankful for all the support I’m getting.

    But the whole idea is still rather difficult. I’ve had to turn down a couple of conference presentations – the most recent being Dev Learn – which is disappointing, but there is no way I could travel to Vegas during chemo and present at a conference. It would be too much. I’ve decided that I’ll try a near-by conference first – one in Berkeley where I’ve had a poster accepted. I can get to Berkeley in 2 hours via public transit. It will be my first academic conference post-surgery (end of February), and I most likely won’t have hair. I have nice outfits that I can wear that will work with a flat chest, if I choose not to wear foobs, but I haven’t thought yet about what I shall do about my head. The whole idea of conferencing seems a little overwhelming right now – and yet I know it is something that I need to do as part of my re-emergence.

    In this re-emergence, I am already thinking about my new identity – and how much I might want my identities to overlap. I’m considering a proposal for the Canadian Conference on Medical Education (CCME) relating to this blog, my experience as a cancer patient, but also my role as a non-physician medical educator. I’m not sure what that presentation would look like yet – I need to do some more consultations with friends and colleagues in the medical education field, and with any luck find one or more people interested in collaborating on something. I feel like there is something important to be learned in this process, I just don’t know what it is yet. I’d like to talk about the power of social media as a cancer patient – perhaps the role of social media in cancer patient education – and what medical students, residents, and physicians can learn from the new ‘connected’ patient experience.

    My forward moving may get delayed now and then – and I certainly am not moving at the same pace as I was before diagnosis or chemo – I am glad, however, to be making some progress.

  • Recommended reading

    Kelley Doyle Philbin writes an elegant post entitled “EVERYTHING I NEED TO KNOW IN LIFE I LEARNED WHEN I WAS DIAGNOSED WITH BREAST CANCER!” that I highly recommend. I found a lot of her words resonated – both with my experience and with the experiences that others have shared with me during various support groups that I attend. Her words so elegantly reflect the reality for many women.

    I am sad whenever I hear of men leaving when their partner has breast cancer. I find myself wishing for these women that they find a real man (or women) – one who truly loves them for who they are – as I have been so lucky to find my true life partner. Any man (or women) who is so shallow doesn’t deserve the love of the strong women who are cancer warriors.

    I also worry, not about my husbands love for me, but about his health – and what he needs to be doing to take care of himself, because it is a lot to take care of me and I cannot adequately take care of him. At least not right now, not in this moment, when I’m too focused – sometimes feeling selfishly focused – on me. But knowing also, that part of being a warrior is being selfish when I need to be – cause right now, I need strength to mentally (more so than physically) get through two more rounds of AC chemo and 12 rounds of T chemo!

    Soon, this shall trump both RAGBRAI and Africa as the hardest thing I’ve ever had to do!

     

  • Guilt

    One of the interesting feelings that seems to be shared amount those who go through traumatic life experiences (cancer / sudden tumor), is that of guilt – particularly of guilt when you are feeling better or when you are in the presence of others who are sharing a similar but different experiences.

    One of the ladies I was talking to at a cancer group mentioned that she was feeling a little like a ‘chemo dropout’. She had a bad (life threatening) reaction to chemo, and because in her case the chemo decision wasn’t so clear (the benefit was marginal) it was clear after the first bad reaction that she would not be continuing with chemo. There were several of us in the room just going through the first cycle of chemo, so she expressed feelings of what I can only describe as ‘survivor guilt’.

    I was talking to another friend last night who also went through the traumatic experience of having a tumor removed surgically, and the reconstruction associated with it. However, in his case, the tumor had no cancer – so although he went through a lot of the same experiences – he isn’t considered ‘a survivor’, because he didn’t have cancer and that label, somehow, seems to be required. He also lacked support groups and all the other infrastructure that is in place for those with cancer. But also, he is lucky in that he does not need to deal with the constant fear of re-occurance. So, he has survivor-guilt because he survived but wasn’t as sick as others.

    That comparison, that need to be part of the group, and yet the recognition that each journey is individual provides a conflict. There will always be someone who has it easier, but also someone who has a much more difficult time of it. When we are together to sharing there is a bond in that shared experience, but also that twinge of ‘guilt’ when you are doing better than someone else – also a lot of feelings of empathy – tearing at my heart strings – when I see others that are doing much worse – but also personal joy in that I am doing as well as I am. Such a mix of emotions.

    I’m not sure that this post is really concluding anything, but making interesting observations about the pull of emotions that is going on right now as I enter my low blood count days (chemo nadir). I’m looking forward to the rebound.

     

  • Negotiating identities in multiple worlds

    I find myself living between two worlds – or perhaps more – negotiating my different identities.

    Anyone who gets breast cancer under 45 is considered to be ‘young’, so I’m re-negotating what it means to be a young cancer patient. In church, we had groups for young adults age 18-35 and I remember the very awkward transition that happened as I could not relate to the younger group. We ended up starting our group of 30-40 somethings that allow us discuss spiritual and life issues in an environment we could relate (eg. kids, career orientated jobs, mortgages, marriages).

    With the cancer groups, I find that professional I relate to the 55 ish old women. These are women who have established professional careers (consults, or other professionals). It is a peer group that I can relate to – however, I don’t have the same kinds of cancers they do. I find that when they hear of my cancer it scares them – because is it not what my first surgeon called “old lady cancer’.  They have slow growing cancers with life expectancy outcomes in range of 95-98%. They are the survivors.

    The young cancer group has so much more to detail with, in many ways. They usually have more aggressive cancers. They are often raising young children (or early teens). They have family obligations and concerns. Some have great support but others are just amazingly powerful women that just power through cancer treatment without asking for help from their families. From this perspective. I’m not that strong, or perhaps a little wiser. My bike trip (http://goingeast.ca) has shown me that people want to help – and sometimes it is better for the people in your lives if you can provide them with concrete ways to help.

    I do find that my empathy levels for others has increased. I worry about how my fiends and family are adjusting. So, although I may blog a lot about myself and how I”m feeling at a particular time, I do it with a worry about how others will feel when they read it. What will help others understand.

    I often find myself forgetting to send out thank-you to those who have sent cards and well wishes. I want to say that I really appreciate everything that has come my way – I just cannot keep track of it all, nor track down everyone to say a personal thank-you. But I do want to say it hear. I greatly appreciate all the support and kinda words I am getting. I hope my short thank-you is enough for you to understand that you too are in my thoughts and heart.

  • I’m ready

    I am so ready to make the transition from someone with breast cancer to someone fighting breast cancer. Tomorrow morning, bright and early, I begin chemotherapy – assuming the heart ultrasound and blood tests say I’m healthy. Ironic (in an Alanis Morissette kinda way), the idea of being in ‘excellent health’ and having cancer at the same time.

    I’ve got everything laid out for my ‘cancer’ bag – that is the bag I bring with me when I go up to Stanford for the day. I received it from BC Connections, a local Breast Cancer support organizations. It has proven to be very handy (both the bag and the organization itself, as this is where I go to support group on Saturday afternoons). I have even chosen my clothing for the day. I bought a new t-shirt that has a low neck line so that my port is easily accessible. I’ve included:

    • A nice warm blanket/wrap that I received from the Three Willows church where my in-laws go (thank-you).
    • A scarf that I received from my friend Maha in Egypt (thank-you).
    • Care squares that came from a family friend (thank-you).
    • A teddy bear that Scott brought me when I was in the hospital for surgery before we were married (with the Canadian connection Hudson Bay sweater).
    • Some snacks and electrolyte mixes to add to my water bottle.
    • My cancer treatment binder, which includes a bunch a cards and the caring card I received from the Ottawa First Unitarian Congregation (thank-you), the card my mom sent with a hope rock on it, and various post cards sent from distant friends (thank-you).
    • Headphones, so I can watch TV or listen to music or podcasts. I have a collection of Vinyl Cafe Stories and Under the Influence podcasts preloaded on my iPhone.

    2014-07-06 07.03.36I hope I’m not forgetting anything. I will also bring both my laptop, my iPad, and iPhone. I have no idea what I’m going to feel like doing during chemo. Scott will be there to help lug my stuff – bringing both the laptop and iPad seems a little redundant, but if I am in the mood for any serious writing (beyond blogging), my laptop has scrivener on it. Plus my laptop let’s me watch TV shows from Canadian networks, which I cannot do on my iPad.

    I’d also like to thank John and especially Alison for the lovely quilt they sent. BC Connections had quilts for anyone going through chemo but I chose not to take one, as I see so many other women that need it more than I do. The following Monday, I received a lovely quilt from Alison and John in the mail. It has turned out to be perfect for our bed, as our down duvet was too warm for this time of year, but going with a just a duvet cover wasn’t warm enough – we were having trouble finding just the right balance, and the quilt is proving to be just that.

    Everything that I’ve read so far about chemo side effects says that it varies by the person. I’ll either be tired for the first few days or overly energetic for the first few days and then tired towards the end of the cycle. If you know me, you know that I like to plan things. This whole uncertainty over how I will react is driving me crazy. I just need to know if I’ll be able to get some work done for a few days here and there or not.

    Since diagnosis, my life has been pretty focused around improving my health (lots of long bike rides and long walks); enjoying myself (sailing, going to Yosemite for a couple of days; various medical tests, scans and appointments; and learning a whole lot about breast cancer in general, and specifically about the treatment options for the type of cancer that I have. I have put all my contract work on hold (fortunately, that was possible). I’m now starting to go stir crazy, and hope to get back to some of that work – however, I just don’t know how I will react to chemo, so I’m afraid to jump into anything right now. So the wait game continues … today I wait … I’m going to go for a swim, go out to the market (now that my stomach is sorted, we need some food in the house – although chemo may change that too), and maybe even go for a bike ride.

     

     

  • Sailing and support groups

    Our day began with a sail around San Francisco Bay on the 2003 America’s Cup boat USA 76 (it was the 76 boat of its type built). It was particularly cool sailing under the Golden Gate Bridge. We thoroughly enjoyed our trip out and are strongly considering their annual pass, which would allow us to go sailing on any of their public sails for a year. I was mindful throughout the sail as to whether or not I’d be physically able to participate. I did ask about people with limited accessibility. They said as long as they can get on the boat, usually they can sit on the life raft (its just a box) at the back, so it isn’t too difficult to enjoy the sale. Even while racing the crew often sit on the deck (floor) to help make the boat more aerodynamic. So, there is no shame in sitting on the floor. So, with that in mind, we shall probably sign up. It will be something to look forward to between chemo treatments. It looks like they sail every Wednesday, Saturday, and Sunday. They also race on Friday nights, but I think that might be a little too intense for me right now.

    After our sail, Scott encouraged me to go check out a newly diagnosed or in treatment breast cancer support group. I was rather nervous about the whole thing. I haven’t really told anybody in person (other than my mothers) that I have cancer. It isn’t exactly an easy thing to say. The support group made it easier to talk about – it gave me a safe space to say it out loud – but also a place to talk about it where they understood the cancer language. Too bad there isn’t a PhD Student Breast Cancer support group so that people understood my academic speak! I also met a couple of really nice people. Since we know so few people in California, it seems odd to me, but the cancer support groups are likely where we will develop new friendships. I was encouraged to come back to both that group and the young adult group. I think I shall give it a try. We are also hoping that they restart the couples group – as ‘Scott and Becky’ could use a support group too, not just Becky.

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