BC Becky

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

Category: Four years and counting

  • Five more years … and a back update

    Five more years … and a back update

    It has been a whirlwind over the last two weeks – with an appointment with my oncologist and an appointment with my back surgeon.

    I was pretty bummed out after my appointment with my oncologist. He again said that I was moderate to high risk for recurrence and that he wants me on some form of hormone therapy for another 5 years. We talked about options, since I really didn’t go through all the options when I stopped a couple years ago. When I stopped I was in pretty poor health. I had just been diagnosed with celiac and high blood pressure and was suffering from lymphedema in my left arm. There was just so much going on that I had to remove variables in order to figure things out, and the first variable was hormone therapy.

    In our prior visit my oncologist floated the idea of 5mg of tamoxifen. I think it is something they are testing for cases of DCIS and previvors (BRCA without a breast cancer diagnosis). Anyways, I agreed to give that a try. And so, for the last four days I’ve been taking 5mg of tamoxifen at dinner time. It causes a slight headache (or at least it did the first couple of days, last night went better). Fortunately, I’m usually pretty mentally burned out by dinner time, so it doesn’t have a hugely negative affect on my productivity. So far, it is something I can live with, so I’ll try that for the foreseeable future.

    I also had an appointment with my back surgeon. He confirmed that we would not do a fusion. He also explained that it would be a “partial laminectomy”. His goal is to remove the least amount of bone possible in order to still reach the nerves. Unfortunately, one of my disk herniations is on the side, which means he will need to move the muscle on the one side to get access. That is likely the part to cause the most pain, as it like spraining your back (ouch). I’ll have a 4 inch incision, but most of that will be superficial, as they will make a tiny hole in the area under L5 in order to access the nerve there and he will shave the disk herniation that is causing the pain. The other herniation at L4-L5 is lateral, so it means he needs to move the muscle to access it. As I understand it, it is about a 1-2 inch area.

    In the end, I feel a lot better about the surgery. He is being as minimally invasive as possible. He is also doing the minimum that needs to be done to clear the nerve pain. I am hopefully that after this I can get back to hiking. It has been a year since I’ve been able to go on a decent hike and I miss it more than you can image.

    What I wasn’t encouraged about is some of the degenerative changes in my back. These changes mean that at some point in the future, I’ll likely need a fuse – but he commented that if I’m careful to avoid lifting anything over 10 lbs and avoid too much strain in bending or twisting, it could be 25 years before the fusion is needed.

    I can hope to live long enough for that to happen. He commented on maybe needing it when I’m 75. This might sound rather morbid, but I just cannot think about being alive for that long. With both my parents dying in their mid to late 60s, and my history of breast cancer, I think it would be a miracle if I can make it to 75! That being said, getting back to hiking and regular exercise will go a long way to helping make that happen. It certainly won’t happen if I become immobile.

    Come January I ask for your prayers and healing thoughts as I do this surgery. I am not allowed to break a sweat for 6 weeks, as the surgeon wants to ensure the incision is fully healed before I do anything cardio related. I am also limited to walking about a 1/2 mile. I’m glad I asked the question, because all the paperwork says that walking is good, but that is written for people who generally don’t walk much. Had I not asked I likely would have been trying to walk 1, 2, or even 3 miles which would not give my body enough time to heal.

    And with that update, I need to get back to work … and back to focusing on dissertation writing and end of term marking.

    Happy Thanksgiving everyone.

    Feature image was taken at Cape Disappointment State Park in Washington.

  • laminectomy or fusion … the woes of my spine

    laminectomy or fusion … the woes of my spine

    As some of you know, I’ve been struggling with back pain – which got severe after I broke my rib mountain biking at Christmas last year. I’ve tried a lot of different things to help improve it – PT, Yoga, acupuncture, massage, spinal injections, and decompression therapy – unfortunately none of it worked. Some of the methods did allow for some temporary relief – mostly taking the edge off that pain – but none of them have given me the sustainable relief that I am seeking.

    If you follow my instagram account you will notice that 2019 has a significant lack of hiking selfies – that is because I have not been able to hike. The pain with walking even 1/2 mile is crazy – I often need to swat down and stretch out my lower back to allow me to go on. I pushed myself to hike 2 miles the other day, and spent the rest of the day in bed with ice on my back. More than anything, I just want to get back to hiking.

    This back pain has also taken me away from the pool. I love to swim. At my “peak” I was swimming a mile (not very fast, it would take me 45 minutes). I miss the meditation that happens then I’m swimming and all I’m focused on is moving my arms and propelling myself through the water. Now when I get in the water and try to swim it is painful. My back hurts. It doesn’t like to flex the way it needs to based on how my body floats. Hopefully pilates will help balance some of the muscles in my stomach and back and make it possible to swim again.

    This pain has also taken a toll on my ability to cook. It hurts to stand for more than 10 minutes – and not just an annoying hurt, but it can get so bad that I need to lay down in order to relieve some of the pain.

    What’s the cause of the pain? I have a couple of herniated discs – one more significantly than the other. All in the lower spine – L5-S1 and L4-L5.

    I’ve started pilates and even have a private instructor who does pilates for rehab. I’m working with her on strengthening in preparation for surgery.

    I got a first opinion from a local surgery who wanted immediately to fuse a couple of my vertebrae – but that seemed rather extreme to me and had me look to other non-surgical options. I’ve now seen a good surgery who comes highly recommended. He laid out three options, depending on the results of scans that we don’t have yet: (1) laminectomy plus discectomy of L5-S1, (2) number one plus the same with L4-L5, and (3) some kind of spinal fusion. He didn’t really go into any detail because we need the scan results. Once the results come in, he will look at them all and make a recommendation.

    And so, this surgery is weighing heavy on me. The timing will hopefully be either late December or early January. This aligns with the 5-year mark from my last major surgery (my bilateral mastectomy with flap reconstruction). I’m afraid of all the memories that will be brought up during this time.

    Part of the desire for this timeframe is that I don’t teach in January, so it will give me some recovery time – however, that is also time that I hope to be working on my dissertation – which I will get back to right after writing this blog post.

    It will also be a different hospital – a little further from home (up at UCSF). The ability to choose a surgeon is a privilege that I am taking advantage of. I’m going to the best because I can – but this means figuring out the ins and outs of another health system – one that doesn’t connect as easily as the other two that I use more frequently.

    I remind myself that I got though a much worse surgery. I am cautiously optimistic that after the surgery, and the associated recovery, that I will be able to hike again. I want to be able to walk the various trails again. I see myself repeating my recovery process – with baby steps, short walks that gradually build back up.

    I will measure the success of surgery in my activities. It will be successful if I can hike, swim, and cook without pain. It will be one step at a time.

    Feature image by Joyce McCown on Unsplash

  • I almost cried

    I almost cried

    I almost cried when as I walked out of my surgeons office – likely for the last time. Thursday I had a follow up appointment with my breast surgeon. When she walked in the room she was excited to see me. She was also excited to show her intern her handy work. She is very happy with how well my breasts turned out – with her only comment being that she wished the scars were completely invisible (they are barely noticeable now). She tried to go and get the plastic surgeon to show her – as my plastic surgeon was also in clinic that day – but alas, she was busy so didn’t manage to pop by. She did get a picture for my file.

    On December 17, it will be five years since my big cancer surgery. It is hard to believe. After a quick exam and conversation about my future plans, she said that “she saw no reason why I would need to see a breast surgeon”. With that I was given the all clear from her perspective. Return if I have a worrying symptom, keep follow ups with my medical oncologist – but otherwise, as far as she is concerned I’m doing fine and I no longer need follow ups from her.

    This is a significant milestone. I have “graduated” to no more appointments with my breast surgeon. I still see my medical oncologist every 20 weeks as I’m still doing lupron shots as partial hormone therapy.

    And so, I felt tears starting to come near the end of the appointment. I want to reach out and give her a hug – and say a hopeful goodbye. I did not, but I should have. Her kindness at times when I needed it most has been a gift. She came to my rescue when things were not going well in the hospital. I have many memories of her holding my hands and telling me I am OK as I cry with relief that what I thought might be something isn’t. I here her voice telling me she had written NED (no evidence of disease) in my chart when I needed to hear it again and again.

    This is perhaps one of the happiest goodbyes I’ve had. She is a such a wonderful doctor, and I hope I never have to see her again!

    Feature image by Mantas Hesthaven on Unsplash.

  • It’s like riding a bike, except when the bike is a recumbent

    It’s like riding a bike, except when the bike is a recumbent

    The other day one of my students made a comment about how prior knowledge and asking how much of it we needed to review. He then used the metaphor of driving a car – stating that everyone knows you “put the key in the ignition”, “put gas in the gas tank” … he went on and all I could do was laugh.

    You see, earlier this week I got a new car – a Chevrolet Bolt – which is fully electric. I had to read the quick start guide to understand even the most basic parts of learning how to drive it. Each time I take it out I learn a new feature. I think it will be at least a month before I have figured out most of it.

    The first challenge was turning it on – press break and hit button as long as the key fob is in the car. There is no “ignition”. It is simply an on/off button.

    After driving it a couple of days, I needed to recharge a little. That too took a bunch of research. Eventually, I went with the slow charge from the house for now – but I might try out one of the quick charging stations the next time I go to the grocery store. Again – this is not obvious. It is like not knowing where to find a gas station and then not knowing how to operate the pump when you get there – nor how to pay – except at the gas station there is an attendant that can help you – with the electric charge stations you are on your own.

    So far, I love the new car. It takes a bit to get used to the even acceleration, as there is no “shifting” of gears involved. I’ve started to play with the manual regenerative braking – it does some of this automatically so I’m not sure if doing anything manually is any better than what the car does automatically when you hit the brake pedal.

    Last night my husband used the expression we are very familiar with – it is like riding a bike – but we know, that it isn’t exactly the same thing. As recumbent riders, we had to learn many thing aknew – sure many of the skills are transferable, but not all of them. Some of the things you take for granted are different.

    I’m definitely exercising my mind every time I get behind the wheel!

  • 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

  • The time has come to professionalize Peer-to-peer heathcare

    The time has come to professionalize Peer-to-peer heathcare

    Recently on Twitter, there has been chatter about the “don’t Google it” advice given to patients and the role of patient narratives in healthcare related to chronic and critical illness.

    Carolyn Thomas at Heart Sisters, recently wrote a great response to this called The questions you don’t ask your doctors.

    One of the challenges of having physicians “Direct those patients to solid information you trust, which will help to inform future doctor-patient conversations” (Carolyn Thomas), is that we are again asking the physicians who are not living with the disease to decide which sources are trustworthy. They are still not in a position to know what lived experience resources are trustworthy – that is something I believe only a patient could know.

    I think we are ready for a professionalization of peer-to-peer healthcare. We are ready to find experts who live with the disease and include them as part of the healthcare system. Certify them. Pay them. Professionalize the role of providing support with lived-experience where the primary qualification is to have that lived experience.

    In Carolyn’s post, she mentioned Nancy Stordahl’s blog Nancy’s Point as a great resource for breast cancer patients. I couldn’t agree more. When I was ready to start reading blogs – which wasn’t right away – initially I wrote but didn’t read, instead my husband did the reading and finding of great blogs – Nancy’s blog was one that I read regularly. It helped me know that I was not alone in my experiences – but also helped me learn a lot about what I might come to expect. Another great blog is Marie Ennis O’Connor’s Journeying Beyond Breast Cancer.

    In addition to blogs, I also found a lot of support in Facebook Groups. I still find support in Facebook groups. When I thought I wasn’t going to reconstruct I joined a group called Flat and Fabulous. That was an amazing community of women supporting one another. I ended up choosing reconstruction, at which time I changed to a different Facebook group – one that supported others going through the same type of reconstruction. For me, the Facebook groups were a place to reach out and get an immediate question to whether a symptom was “normal”, something I could wait and tell my doc at the next appointment, or something that I should call immediately about. Since the group has an international presence, I could get answers to my questions at any time of day. That goes a long way to reducing anxiety and ensuring that I am getting the best healthcare I can.

    I go back to my point above. I think it is time that we start looking at professional ePatients – those with lived experience who choose to be guides and advocates for others living with critical or chronic illness. We are a huge untapped resource that should be part of the healthcare system.

    The professionalization of this role would also help to address the income gap for those with critical and chronic illness. Not everyone wants to be a professional ePatient – but there are people who do. People who live with there diagnosis, share their experiences, and learn a heck of a lot about the disease. They are experts. It is time we started including them into the system as the experts that they are.

    Do you think we should look at creating a professional ePatient role that is embedded within the healthcare system? What would skills and competencies would that person need to have?

    Feature image by Christina Morillo via Pexels.

  • Back pain … what now

    Once I found out that my back pain was not caused by cancer, I had to figure out what to do next. The pain was unbearable and constant so there was no way I could continue with doing nothing. I first followed up with the physiatrist and booked another back injection. The injected helped temporarily. It took away the constant pain, but didn’t help with the issues I’m having with standing or walking (which means I cannot hike and I cannot even walk around the block!). I asked for a referral to the neurosurgeon – the next step in this process.

    This involved MRIs and x rays, which showed that I have some spinal compression and a herniated disk. The surgeon did a really good job of explaining what was wrong, and what the surgical option would be (fusing a couple of my vertebrae in my lower back). The recovery alone would take at least 3 months and there is no guarantee that the surgery would help. Also, there is a risk that longer term, the surgery would then cause stress on discs further up my spine, leading to the same problem just higher up. That being said, I need some form of relieve.

    I went to see a disc specialist – technically a chiropractor, but one that specializes in disk injuries. He looked at my MRI and showed me what was wrong with my back, and put together a non-surgical treatment plan that involve spinal decompression therapy. The treatment is a bit intense – three times a week for 8-weeks – but also holistic. They do decompression, but also muscle stimulation, cold laser therapy, chiropractic adjustments, and exercise therapy. The idea is that as the spine gets decompressed (using a special machine), this causes negative pressure between vertebrae, which then allows fluid to go back in and rehydrate the discs – leading to healing of the disc. The exercise therapy helps to build up the necessary muscles to help keep the discs hydrated – which is seen as the core of the problem.

    I decided to give it a try. I read some of the criticism about the research – which I see the bias in right away – that is, they complain that there isn’t a “blinded study” and such. The challenge is, that this isn’t something that you really want a blinded study on. I have seen enough of the way some of the cancer trials are done – many are not blind – they cannot be. I cannot see how this could be blinded, as you feel the traction – so you would feel if you were not getting it. I think the blinded trials in mouse studies makes sense, but I’m not convinced they make sense in studies that involve human bodies – bodies that are so individualized and complex. Epidemiological studies make more sense but they are only useful with interventions that are done on large populations.

    Either way, I decided to give this a try and I have some hope that it will provide not only relief from the pain, but a lasting way in which to address it non-surgically. Crossing my fingers that this works!

  • I forgot … and that is a good thing

    I forgot … and that is a good thing

    On Wednesday, as I was signing a bunch of papers, I wrote the date down at least 6 times. June 12, 2019.

    It wasn’t until support group last night when I was introducing myself that I realized that Wednesday (the day before) was June 12. Five years ago on June 12 the radiologist told me I had breast cancer. Five years ago today I started this blog.

    I was a little surprised when I realized the date went by and I didn’t remember it. I had no emotional breakdown or any feelings about it. Now, I do not consider my diagnosis date as that significant, as I still had cancer in me. I had cancer in me until December 17, 2014. That date is one that I am not likely to ever forget. But forgetting the various milestone dates that led up to December 17 – well, it is ok that those get forgotten.

    So today I’m happy because on Wednesday I forgot … and that is a good thing.

    Feature image by Craig Tidball on Unsplash

  • 30 … uh … 10 things that make me smile

    30 … uh … 10 things that make me smile

    I have been struggling with writer’s block lately. I know I need to get back into a regular writing practice. I’m making progress with my dissertation, but it too needs me to just get comfortable with putting words on the page – getting past that block.

    Today I decided to search for writing prompts. At first I was looking for prompts to help the digital storytelling class that I’m facilitating, but then I decided I wanted to try something for this blog too. I’m not really in an intellectual mood this afternoon, so I needed something more reflective. One of the prompts I came across was to write about “30 things that make you smile”. I decided that 30 was daunting and I wouldn’t even start if I had to start that big … so I figured 10 things, in no particular order that make me smile.

    1. My garden. I feel content with the Mona Lisa kind of smile way whenever I go into my garden. At different times of year, it has different crops. Right now it is piling high with snow peas. I had planted a bunch of what I though would be sugar snap peas before going on vacation. They appear to be snow peas – and they are delicious. I also have lettuce that I can harvest daily – enough to make a side salad to go with dinner each day.
    2. A bike ride. It doesn’t seem to matter how far I’m biking. I often have to fight a lot of inertia to get myself organized and then finally get on the bike – but once I’m on the bike, my whole body smiles. It doesn’t even matter what kind of biking. I have a folding bike that I use for most paved trail riding, a recumbent, and a mountain bike. With any of them, after a few strokes of the pedal a smile creeps across my face.
    3. Views. I love to look out over a valley. I love views from the tops of hills (or mountains). I love hiking up a hill/mountain (small mountain) and seeing the view of the valley below. Unlike biking, I do not immediately smile when I start a hike. It is usually a good 20 minutes before I start seeing things that only slow modes of transport can show you – and then I start smiling.
    4. Walking on a sandy ocean beach. I don’t generally like walking in the sand, unless it is at the seashore with the smell of the ocean and the sound of waves crashing by. I can walk pensively along the ocean beach, and when I look out at the waves watching the sea birds playing in the wind – that makes me smile every time.
    5. Swimming with sea turtles. I love to snorkel and I love snorkelling in Hawaii in particular. It is why, when I wanted to something as a breast memorial that I was drawn to swimming topless with the turtles in Hawaii. There is something magical when you come upon a sea turtle while snorkelling. Moving my arms in a way that echos the graceful strokes of the sea turtles front flippers (do they call them flippers?). It is pure magic.
    6. Laughing with friends. I don’t do nearly enough laughing. There has been a little too much seriousness in my life lately. The lack of laughter in my life makes me that much more aware of it when it happens. I have learned to really appreciate those times when we laugh together.
    7. Cuddling with my husband on a cool night while sleeping in our “adventure van”. I sleep so well in our van. In part it is because when I’m sleeping in the van, it means I’m out in nature somewhere. I’ve done trips alone before, and I still sleep well, but it isn’t the same as cuddling up with my husband on a cool night – feeling his chest rise and fall with his breath. It is pure magic.
    8. Serving a good meal. I love to cook – but especially love it when the meal that I prepare turns out well. I don’t generally follow recipes so my cooking is not typically consistent. I do, however, especially enjoy it when a meal comes together and is especially good.
    9. Eating a good meal. I am a bit of a foodie. We used to enjoy going out to nice restaurants – ordering the 5-course chef surprise. Unfortunately, since my celiac diagnosis this has been a lot harder. I can rarely order the chef surprise as I cannot guarantee it doesn’t have gluten. In most restaurants, I only have a couple of choices, as almost everything on the menu has gluten. However, every now and then we find a place where the food is really good and I feel like I can relax and enjoy it. That makes me smile. I wish there were more places like that.
    10. A lesson well received. In this case I mean  that when a lesson that I designed in one of my online courses is well received by students. More specifically, when my students surprise me with what they do. I try to keep the instructions open enough so as not to stifle that creativity and inspiration in my students. I smile when an activity causes my students to produce something that is well beyond my expectations.

    And that was 10 thinks that make me smile. There are more. Writing this post made me smile – at least 10 times. As I reflected on each of these things, I felt the echo of a smile.

     What are 10 things that make you smile?

  • June is hitting me hard

    June is hitting me hard

    June is a particularly pensive month for me. This year June is hitting me harder than it has hit me in previous years. June 12, 2014 was when I first heard the words ‘you have breast cancer‘. Last year, in June I had heard that mom’s cancer had progressed very quickly. It is hard to believe that was a whole year ago. It feels like both yesterday and forever ago.

    One reason I think I’m struggling right now is that I normally would share this particular struggle with my mom. I often would talk to her about how one of the hardest things I ever did was have to tell her I had breast cancer. This year she isn’t with me to share this memory. It wasn’t a pleasant memory, rather it was a memory of shared pain. We each felt the gut-punch at the saying of those words. I could not say it without breaking down into tears.

    I didn’t struggle so much with my mom’s birthday because we were on vacation. I didn’t struggle so much with Mother’s Day this year because we were again on vacation. Now it is Father’s day. I see the advertisements constantly. Everywhere I go there are ideas and things you can do with dad. It is hard, because again I cannot share that loss with mom.

    And so it is Father’s Day and the month of June in general that makes me feel down. I am struggling. I’d say I was putting one foot in front of the other, but I’m not really doing a whole lot of walking – my back is still not cooperating with me on that front. When my back hurts, it also reminds me of mom. She had back issues for a long time. Some of the symptoms I’m having now are echos of the early symptoms she had. I find myself having to remind myself “I am not my mother”, in much the same way I had to remind myself that “I am not my father” after finding out that I have celiac disease.

    And so I am trying to figure out some new coping mechanisms – and I’m going to try to get back into regular writing – and regular creating. I’m enjoying the classes that I’m teaching. I’m making progress on my dissertation again. These are things that would benefit from me getting back into regular writing – and regular blogging. I’m going to try because often just putting it down in writing helps. It helps me to acknowledge what is going on in my mind.

    I’m not just remembering my diagnosis five year ago, I’m also grieving the loss of my parents. Love you mom and dad.

    Feature image by Mike Labrum on Unsplash

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