BC Becky

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

Category: Navigating the new me

  • An unexpected trip to Vegas #celiac

    We had not planned on spending a day and night in Las Vegas – but we ended up there. The alternator in our rental RV decided it didn’t want to work anymore. We managed to get to Pahrump Navada to get the problem diagnosed (a warning light went on just as we were leaving Death Valley). Fortunately, I had the foresight to suggest that we get it fixed in Las Vegas, that way we could make the most of our unexpected detour and spend the day exploring Vegas. I later learned that the thing Pahrump is most famous for is legalized prostitution. So I was very glad that we didn’t spend any more time there then we needed to!

    One of the challenges with being without the RV is that I’m not yet that good at figuring out how to eat out Gluten-free. I really didn’t want to get sick! Fortunately, a quick Google Search gave me the link to Gluten Free Las Vegas – a great website with a list of recommended restaurants. I even got to eat at a couple of restaurants who’s owners were on Top Chef Masters (Spago by Wolfgang Puck & Border Grill). The foodie in me was a little underwhelmed by our meals. We found them to generally be overpriced and mediocre. However, I’m very happy to report that I did not get sick. In each of our three meals (buffet lunch, nice dinner, and then nice lunch the next day), we ate way too much. We both were glad to hear the that the RV was fixed, so that we could get back on the road.

     

  • Treatment update

    I mentioned in a previous post that in the new year I’ll be starting a new treatment to help reduce the risk of breast cancer recurrence. Since then, hubby has found for me a link to the studies that were presented at the clinical cancer conference in San Antonio. Thanks go to Anne at Chemobrain Fog for posting links to the presentations. I’m going to post two of the video clips below.

    It will be interesting to see what my insurance says about the denosumab. They made me do the injections of Nulasta (at $5000 per shot, I’m amazed that they trusted me to do them myself). Denosumab is similar in that it is a subcutaneous injection. We shall see. Given that I have low bone density (osteopenia), my insurance should cover the injection.

    And so, in the new year I will begin a new breast cancer treatment regime that will also help to address issues with bone loss (which in part could have been caused by undiagnosed celiac disease). What I don’t know is when do I get a follow up bone density scan to see if it is working? Likely not for 6 months or a year – maybe even longer.

    Crossing my fingers that I tolerate the new Aromatise Inhibitor and denosumab well. It means that treatment to reduce recurrence includes Lupron once every 3 months, Denosumab once every 6-months, and a daily Aromatise Inhibitor pill. These are part of my “wellness” treatments!

  • A visit to the pain doctor

    Yesterday, I saw a pain specialist. This was in part due to some ongoing pain in my left breast – right where my tumor used to be. I’ve had the problem pretty much all year. I recall my plastic surgeon days “It’s just a stitch“. I also have back pain and pain associated with chemotherapy induced peripheral neuropathy. I was glad to be able to talk about all my pain issues.

    I had two important take aways from the visit. First was the term “pill fatigue”. The idea here is when you need to take too much pills. I find this with gabapentin. I can manage it twice a day but three times a day is just too much for me to manage. Fortunately, he happen to mention a different gabapentin – one that is time released and only need to take once per day. I say immediately yes! He did warn me that it is not on all formularies – a term I’m learning which means not all insurance companies will pay for it. Given that the three pills three times a day is a valid treatment option – however, it doesn’t account for “pill fatigue”.

    The other important take away – and the one that made me cry because it hit close to home – is the association of pills and illness. Every morning and evening I’m reminded of my various ailments because of all the pills I’m taking. The doctor suggested that I find a way to move beyond that and accept that taking pills is part of wellness. The idea really struck a cord. So, I am going to try to reprogram my brain. I’m going to try to see my morning and evening pills as wellness pills rather than illness pills. I take the pills so that I stay well.

    More important than any pills he can give me to manage the pain – we talked about a new drug but it will need to be coordinated by my psychiatrist and oncologist (I really got a sense of my various doctors working together on my care) – but more important than that is that I left the appointment with a new attitude, and I think that will help more than anything else.

  • A little bummed out …

    I came back from my last oncologist appointment (Monday) feeling a little down. The visit was good. We made a solid plan of action that addresses both breast cancer prevention (hormone therapy) and treatment for osteopenia (low bone density). I was fine until I asked the question “so how long would I need to be on the hormone therapy?” … the answer I got back was “for you, 10 years”. So I’m bummed. I had hoped with the switch aromatase inhibitors that it would drop down to 5 years.

    The good news is that the latest research (of about two weeks ago) is showing that Aromatase Inhibitors (AI) plus denosumab once every six months decreases the risk of hormone positive breast cancer recurrence. Upon hearing this, I tried to look it up. I didn’t find anything. However, I decided early on that I trust my oncologist. He is the expert. He is the one going to the academic and clinical practice conferences. And so, I now have a plan. I’m still taking Lupron once every three months to ensure that my ovaries are not producing estrogen, then in the new year (actually February) I’ll begin taking an aromatase inhibitor which stops my body from converting androgen to estrogen, reducing the amount of estrogen in my body even further. It looks like Breastcancer.org have recently updated their page on aromatase inhibitors as it now references a 2015 study. I’ll add in the denosumab once I’m stable on the AIs and once my foot has finished healing (In January I’m having a minor surgery to clean the arthritis and bone spur on my toe).

    I’ll be adding one thing at a time, so that I can figure out which has side effects for what. I’m encouraged that the AI is said to have less side effects then tamoxifen. I have very few / minor side effects with the Lupron. I’m just hoping I don’t end up with crazy headaches like I did on tamoxifen. That was not fun and truly began to drive me crazy.

    I try to look on the bright side. I try to think that this is my ‘protection’. I feel a twinge of guilt because I have something that provides that protection and yet I really don’t want to have to take it – unlike a friend who has triple negative breast cancer and was recently diagnosed with metastatic breast cancer – at least I have something that might provide some protection. However, I also think it totally sucks to have to be on medication for 10 years. It sucks to be thrust into enforced menopause before my time. It has me kind of bummed out …

  • Memories

    As my one year cancer free day is fast approaching (December 17, 2014 is the date the last of my cancer was removed from my body), I am finding myself having flashbacks to my diagnosis day. I am not remembering the storm the week before surgery, nor how low I was feeling. Instead I’m remembering some of my thoughts upon initial diagnosis.

    I am remembering how I thought to myself If I get treated at Stanford does that mean I get to buy the sweatshirt? Finding it tacky wearing university clothing for schools that I’m not associated with. Fortunately, I’m associated with enough schools that my sweater collection isn’t lacking.The answer to that question was a resounding yes. I wore my Stanford hoodie to almost every doctors appointment and chemo session. Now I’m wondering Now that I’m one year cancer free can I buy myself a new Stanford sweatshirt? Or do I move on and just get sweatshirts/hoodies for the schools I’m teaching at/studying at?

    As I write the question, I reflect on just how trivial it is. Not a big decision.

    The other memory I’m having is that of Window Shopping. I recall that morning (before treatment, while we were still waiting for pathology results), walking through Sausalito, finding myself staring at women’s breasts. Scared. Not knowing what was going to come next.

    In the midst of these flashbacks, Facebook reminds me of the rain storm at this time last year. It rained heavily for three days straight. The rain would mean that the emergency rooms were busier than normal for this time of year. It also meant that the hospital was a complete zoo when it came time for me to check-in for my surgery.

    Those are my memories for this time of year.

    Another lifetime ago, in December 2008 we were visiting Antakya Turkey. We were preparing to get back on our bikes and ride into Syria. That was a lifetime ago!

     

  • Feeling strong but cramping…

    Not sure if it is the gluten-free diet (except for when I get accidentally exposed – not sure yet what got me earlier this week). Not sure if it is just that I’m fitter now. Not sure, but it is good.

    Usually when I take a week off exercising, my body back-slides. I end up not where I left off. So, it was with that trepidation that I jumped in the pool yesterday. I fully expected to only be able to swim half or maybe two-thirds of what I last swam. So, I was pleasantly surprised when I managed to almost make the same number laps as my previous swim which was two weeks prior. I’m now swimming 800m in the 25m pool.

    I usually end up having to get out of the pool because of muscle cramps rather than any other type of fatigue. I drink a full electrolyte drink before getting in the pool, and I have my water bottle handy – often drinking most of it while swimming. I’m still getting muscle cramps – either in my feet or calves. For all my swimming friends, I’m open to suggestions. My muscles are well warmed up as I usually do 30-40 minutes on some form of elliptical/arc trainer first. I’m also taking calcium, magnesium, and zinc supplements. Any thoughts on what else I might do to prevent muscle cramps in the pool?

  • The other 70 ish percent

    It occurs to me that there is a lot of dialogue about how approximately 20-30% of early stage breast cancers progress to metastatic disease. I ran into a bit of conflict in a discussion group the other day because I asked the organization to do some more research around the myth of 30%. With that I’m referring to how people use the 30% number as if it were a known fact, when we currently don’t have any accurate statistics to support it as fact. I’ve blogged about the dangers of throwing out scare tactic statistics on those of us living with the aftermath of treatment.

    This 30% is used to rebuff the message that “early detection saves lives”. Unfortunately, for 20-30% of women, early detection makes no difference. For them, the disease will progress to metastatic disease regardless of what they do. However, what about the other 70ish percent? Does early detection make a difference for them?

    The point of this post is to talk a little bit about what it means to hope to be in that 70%. I hope that early detection does make a difference. As I learn to live with the aftermath of very invasive and traumatic breast cancer treatments, I am left reflecting – I am left hoping – the only way that I can personally consolidate the assaults on my body is to accept that had I done nothing, I would have died. So, for me, early detection did save my life (at least that is necessarily my current view). Early detection wasn’t a wasted effort.

    So, maybe early detection doesn’t save all lives, but to say it saves none would again be unfair to those who have survived breast cancer treatment. It would be unfair to those of us who live through the side affects and aftermath of treatment.  We need to believe that acting quickly to treat our not-yet-metastatic breast cancer was the right thing. We need to be believe that early detection helped reduce the severity of our treatments and the spread of our disease.

    I won’t be able to tell you that early detection saved my life until I die; however, I will tell you that I believe that I caught my breast cancer early. I believe that early detection meant that the cancer had not spread to my lymph nodes before I sought treatment. It reduced the impact of my treatments (I didn’t need radiation), although my treatments were pretty extreme (chemo and bilateral mastectomy) – and now hormone therapy (which is a misnomer as it involves the blocking of hormones rather than providing hormones). For me, I have to believe that early detection saved my life, cause otherwise, all the hell of treatment was for nothing, and I simply cannot believe that.

    So, for 20-30% of women, early detection will make no difference. For the rest of us, it will save our lives.

  • Lymphedema – attempting to separate fact from fiction

    There is still very little understood about lymphedema. Because the largest population of those who suffer from secondary lymphedema (that is lymphedema as a result of surgery for something else) are breast cancer survivors, many of the studies involve the breast cancer population.

    I want to highlight that there is a difference between prevention of lymphedema for those who are at risk (or high risk) and treatment for those who already have lymphedema. Recommendations for those who do not yet have lymphedema are not the same as for those who have it.

    On a side note, I had someone tell me I should take x supplement because they took it during chemo and didn’t develop neuropathy. As a result, she concluded that the supplement would help cure my neuropathy. This highlights a fundamental misunderstanding about the difference between prevention and treating what is. It also highlights that she didn’t understand that she didn’t understand the differences between correlation and causation. But I digress.

    I was hoping to get a better understanding of the face versus fiction of lymphedema from a review article that my physical therapists (also lymphedema therapist) mentioned (see Cemal et al, 2011). Unfortunately the article was more focused on the prevention of lymphedema rather than the treatment for those who already had lymphedema.

    In reading the article I did find myself wondering if my lymphedema in my left arm is related to my DIEP surgery – and more specifically that my left arm was used for the blood oxygen level testing. After surgery my inner left forearm was one giant bruise with a bunch of pin pricks in it. I recall from my first couple of days after surgery that it was one of the areas of my body that hurt the most – even more than my giant stomach wound.

    One of the challenges with lymphedema is that it can develop later (typically 12-18 months) after the procedure that may have caused it. So, it could very well be that my left arm lymphedema was triggered by the large number of needle pricks during the 10-hour surgery. I could also have been caused by the exercise class I went to the week before it developed. Or the long bike ride that resulted in some shoulder cramping. So many different things could have caused it. We just don’t know.

    To summarize the findings of this systematic review, there is limited evidence to support the recommendation that venipuncture [needle sticks such as blood draws] should be avoided in patients with a history of lymph node surgery. Similarly, there is a paucity of evidence to support the preventative measures regarding limb constriction, elevation, heat and cold, and air travel and use of compression garments when flying. On the other hand, we found good scientific evidence (level 1 and 2) to support the recommendation of maintaining normal body weight or avoiding weight gain in patients who are at risk for developing lymphedema. Similarly, there is strong scientific support for participation in a supervised exercise regimen both in patients with lymphedema and in those at risk for developing lymphedema. ~ (Cemal et al, 2011, p. 549).

    For me the elephant in the room is weight gain. Medications and surgeries have all resulted in me gaining more weight than I’d like. I’m active. I have healthy eating habits, and yet I am carrying more weight then I think is healthy. I’m hoping that a shift in medications will help that – as my weight is starting to cause other complications. Added to the mix is that most celiacs who eat gluten free after diagnosis gain weight as the body starts to absorb nutrients properly. I’m hoping I’m the exception on that one … Additional weight gain would be unhealthy for me.

    One other quote from the conclusion is important “The lack of clarity for effective preventative measures likely contributes significantly to patient fear and anxiety.” (Cemal et al, 2011, p.550). I think this is really important. If you read too much on the internet, you will hear lots of scare tactics about lymphedema. Don’t do this or don’t do that or you might get it. The problem is, as the article indicates, there is actually little evidence that demonstrates that any of the preventative measures make any difference what so ever. This matters, because if you end up with lymphedema, and end up asking why did this happen to me? you start asking what could I have done differently? It leads to a sense that you did something wrong – which isn’t necessarily the case. In addition, if you haven’t had it, you can unnecessarily become afraid of doing things as they might lead to it. That fear and anxiety is unnecessary. As breast cancer survivors, we have already have enough things to be afraid of, we don’t need to add lymphedema to the list. 

    I was in the low risk category. I did what my doctors told me to do. I still got lymphedema. I don’t know why. It doesn’t really matter why. But I also don’t think you should do anything different because I got lymphedema. There simply isn’t any evidence out there that says this will cause it or this will not.

    Reference

    Cemal, Y., Pusic, A., & Mehrara, B. J. (2011). Preventative measures for lymphedema: separating fact from fiction. Journal of the American College of Surgeons, 213(4), 543-551.  doi:10.1016/j.jamcollsurg.2011.07.001

  • So you have this thing … lymphedema woes

    So you have this thing, and you are likely going to have it for the rest of our life, and there isn’t much we can do about it but … wear a compression garment and come back in a year …

    Really?

    I ended up sending another message to my doctors about lymphedema. They really didn’t tell me a lot. At the time, I wasn’t ready to hear that much. But now, a month has passed. I’m ready for additional information. The problem is, the internet is filled with misinformation. For every thing I read that I should do, I read another article that says I shouldn’t do it.

    So I send another bout of questions off to my doctor – starting by asking what websites are good for getting good quality information about lymphedema.

    One of the useful links was to this video clip on a presentation about lymphedema. I find that having watched it I have a better understanding of the relationship between the skin and lymphedema. I had thought of the lymph system as this shadow circulatory system, but had not appreciated the link between lymphedema and skin health. If you want to learn more, I recommended watching the video.

    And so, like in the video, I’m going to go and put my head back in the sand for a bit. I have too much on my plate right now. I’ll deal with this issue one step at a time …

  • Which doctor is in charge?

    I find myself often wondering, which one of my doctors is in charge? Which one is “the most responsible physician”?

    In my case this all gets complicated. I see a lot of doctors and nurse practitioners, across two different systems (Stanford and Palo Alto Medical Foundation). My medical conditions have overlaps, so when one doctor orders something, I’m often having the results sent to other doctors.

    My most recent test was a bone scan. This was done as a baseline measure before I start any additional hormone therapy. It was also done because one of the potential side effects of untreated celiac disease is osteoporosis. I figured it would be good to get a baseline measurement. So, when I mentioned my concern to my gastroenterologist (celiac specialist), she placed the order. However, since my oncologist is the one I work with on the hormone therapy plans, I asked them to send him a copy of my results.

    Last Wednesday I was up at Stanford yet again to see my surgeon’s assistant. I’ve had persistent pain in my left shoulder almost constantly since my last surgery in March. I’ve complained about it frequently.  Of course, this also leads to a bit of a freak out, as the pain is coincidently right where my largest tumor was – so whenever it flares up (like it did last week), I enter a spiral of self-doubt and worry/panic. Is it cancer? There is something wrong! Except, that there is nothing wrong and it looks nothing like cancer. This time, my surgeon’s assistant referred me to the pain management clinic (integrative medicine). There is a theory that acupuncture might help finally make the pain go away, which would reduce this stupid spiral. She also mentioned that she’d pass along the info to my oncologist and psychologist – just so that everyone was in the loop. Of course, this made me feel stupid. I felt a little embarrassed, that this was nothing yet again, and now my oncologist would know that I was in seeing my surgeon’s assistant for nothing. Logical me, knows that it isn’t nothing and that I needed to do it, but still, when it turns out to be nothing to worry about, it makes all the worry seem like a waste.

    Later that day, I had to return to Stanford cancer center to pick up a couple of compression sleeves (damn lymphedema). As I was waiting for the nice lady to finish looking things up and find a few things, my oncologist spotted me and knocked on the door (it was locked as someone else was being fitted). He called me over with a comment about “saving him from having to call me” … of course, embarrassed me is in a panic state. Why is he calling me? Boy do I feel like an idiot. Unfortunately, it had nothing to do with my morning visit. My bone scan results came back. My numbers are a little on the low side (I have no idea what they are as the test results haven’t been released to me yet). His comment was “nothing urgent, we are planning for 30 years from now, not 30 days” … so, in order to ensure I don’t end up with osteoporosis issues 30 years from now, I’m to double up on my calcium and vitamin D supplements. All my blood tests indicated that I was fine on both accounts, but apparently, that isn’t translating into bone density. So I’ve doubled up for the time being and we’ll see what the future holds. There is some theory that as my body detoxes and heals from the gluten exposure, it will self-correct on things like malabsorption of calcium.

    This brings me back to my question – which doctor is in charge? The doctor that ordered the test isn’t the one that told me the result. Neither doctor has released the report to me, so I don’t yet know what the official results of the bone scans were – I just know that they were low. I also don’t know which doctor will formulate a plan regarding this … probably yet one more doctor (an endocrinologist) as it is yet one more speciality.

    Friday I saw another set of health providers for totally different reasons. I had a L-Dex scan. This was my first measurement, meant to be a baseline. Ideally, they want to start taking these measurements on women before they have surgery involving lymph nodes. It may provide a way to help predict which women are at risk for lymphedema. My first measurement doesn’t mean anything on its own. I will do another measurement in three months. It will be compared to the first to help determine if my lymphedema is improving with compression therapy.

    I then went over to see the therapist that manages my anti-depressant medication. She was awesome. For the first time in a long time I felt like someone was looking at the whole me, and not just the part of me that is their subspecialty. She was concerned about my weight gain (upward trend since August, which might also be related to eating mostly gluten-free), but also my blood pressure. With those two items in mind, she recommended a change in my anti-depressant meds, as the one that I’m taking right now increases appetite (great when you are on AC chemo, not so great otherwise). Really, she has been the first person to actually do something about my weight concerns. I’ve raised the issue. My other doctors make comments like “lose weight” without giving me any tools to achieve that – or worse – they put me on medications that cause weight gain and then tell me to lose weight – it is really frustrating. So, I was happy to have a care provider actually look at the whole me, appreciate that I exercise a lot already, I eat healthy, and my meal choices are even more limited by the removal of gluten.

    In some ways this post demonstrates yet another typical week in my post-cancer treatment life. I may not be fighting the cancer anymore, but I certainly am fighting the after-effects of cancer treatment. In some ways, I’m still in treatment. I don’t completely understand why hormone therapy isn’t considered treatment – probably just a pragmatic thing, you wouldn’t want to be told that treatment lasts 10-years. And for some women, hormone therapy has only a few minor annoyances – it certainly isn’t as bad as chemo. And so, I continue to reclaim aspects of my previous life, while juggling way more health related appointments than I’d like, and I try to get healthy both physically and mentally. This week, I’m a little stronger.

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