Author Archives: Becky

Not fighting a battle – the closure to the narrative is death itself

Recently, I read a book chapter by Arthur Frank (2009) titled “The necessity and dangers of illness narratives, especially at the end of life”. It got me thinking.

One of the pet peeves among many cancer bloggers as well as those with metastatic breast cancer is cancer as a war metaphor – that is, the fighting a battle with cancer language. Many people don’t like suggestion that those who died from breast cancer “lost”, as if they did not try hard enough, as if breast cancer was something that involved winners and losers.

In the article Frank says that “narrative thinking embeds the idea that obstacles must be overcome for there to be a closure. Moreover, obstacles are necessarily understood as a personal test, conveying a sense of individual victory or defeat.”

If I look back on my experience, there was a time where I identified as a warrior. The metaphor worked. I was in chemotherapy and suffering from a variety of side effects. I needed to fight to keep exercising and do my best to keep strong. The war metaphor worked for me. It motivated me. In reflection, I see that it worked because I needed the sense of closure. I needed to know that the immediate experience I was having would end. To mentally make it through all the suckiness that was chemotherapy and then surgery recovery, I needed a sense of ending. So the war metaphor gave me a sense that there would be closure to that part of my life’s narrative.

But now, after acute treatment for early stage breast cancer, I feel that the war metaphor no longer works. It doesn’t work for my friends who are metastatic and will die from this disease. But it also doesn’t work for me. With survivorship, one of the things I am coming to terms with is that there is no sense of closure. There is no clear ending. The war metaphor no longer works for me. I’m living with all the side effects of treatment, and with all the fears of the cancer coming back, or another cancer happening. I do not expect that there will ever be that pretty closure that narratives seek. But I also think that is part of the point.

It got me thinking about why the war metaphor works for some people. With the war metaphor there is an a sense of ending, a sense of closure. But for most people with breast cancer, the only ending or sense of closure is death. It is not a narrative that is meant to have closure. The need for closure takes away an aspect of the experience that is paramount to those who are surviving after breast cancer treatment. You don’t know that you “survived” breast cancer until you die from something else. And those who do die from breast cancer, don’t lose a battle, they die. The sense of closure in the narrative is death. It doesn’t need to be a battle lost. It shouldn’t be a battle lost.

The freezing surf

This weekend I had the opportunity to learn a little about surfing. I first learned about the Send It Foundation from the Bay Area Young Survivors (BAYS) resource website. Sent It provides opportunities for young cancer survivors to get out in nature and do something – this weekend that something is surfing, stand up paddle boarding, and kayaking.

I was worried a bit because I’m a little older that most of their regular campers. Actually, this weekend I was the oldest one there. But I could not turn down the opportunity to learn how to surf. I have always wanted to try it.

The weather was beautiful but man that water was cold! Even the surf instructors said that the water was exceptionally cold. It has been windy the say before, so it stirred up the water from deeper in the ocean, dropping it by a few degrees. Someone said it was 50 Deg F (10 deg C). All I know is that it felt like ice on my hands. Luckily, our lead surf instructor decided that in addition to wetsuits, we should also have booties. They made a huge difference. I tried going out on Sunday without booties and could get in very far. My feet felt a “brain freeze” type sensation. Did I mention, the water was COLD.

Overall, I had a hoot. In addition to learning a little about surfing, and riding a few waves on my stomach (I don’t have the mobility to stand on a surf board – at least not yet), I also got a chance for a little standup paddle boarding and kayaking. I really wanted to try out kayaking as it is something we used to do all the time. It was nice to validate that I could do it – although on Sunday my pecks were screaming at me.

On Sunday morning my body was starting to hurt (in a good way). By the afternoon, I was finding every opportunity I could to stretch out my shoulders.

I had a lot of fun this weekend – Thank you Send It Foundation, and especially Katie and Caroline, for giving me the opportunity to learn what it means to Send It!

It’s amazing the difference a good night’s sleep makes

Wednesday night I did not sleep well. I had a hard time getting to sleep and a hard time staying asleep. I woke up early Thursday morning exhausted. To make matters more challenging I also had to be out of the house for most of the morning. I found that I could not concentrate. I struggled with focus. I couldn’t get any work done. I felt miserable. I spent most of the day on the couch watching TV.

What is worse than not feeling great are the dark thoughts that run through my mind. I find myself questioning whether or not the sickness that I’m feeling is a return of cancer. I find myself going down dark paths in my mind feeling like this disease is going to kill me.

My logical brain tries to dig me out of the hole. I try to reason with myself, reminding myself that I don’t need to be thinking this way – that worrying and having these thoughts will not change any outcomes – that there is not point in dwelling in this misery because it doesn’t make any difference. I try to convince myself that I’ll be OK – and that I am OK now. I try. But those dark thoughts keep popping in to my head – they overwhelm me.

Then the day ends and I go to bed. Last night I slept well – a solid 8.5 hours sleep. I woke up well rested. Although the heat wave broke, so the temperatures are a perfect 22 degrees C, sun shining, with a nice cool breeze. Exactly what I needed.

Today has been hugely productive. I’m almost done marking. I made progress on my dissertation. I’ve done other self-care things that I needed to do. I walked around the block a couple of times. I’m feeling so much better.

I know that sleep affects my mental health – but this highlights just how much. Today I’m glad that last night I slept well!

 

How cancer has changed my approach to the medical system

I’ve been reflecting lately on how my cancer experience has changed the way I approach medical conditions. In some ways this is a good thing, in others not so much.

I am much more comfortable with the idea of getting a second opinion and seeking out treatment options. I look back on how I approached my cataract issues (pre-cancer). I searched for a doctor that came recommended, booked appointments, and had the surgeries. I didn’t even consider getting a second opinion. At the time, I felt the urgency in it. I was going blind quickly, unable to drive at night or see in bright sunlight, and living in between Ontario and California. I was still approaching the problem as a Canadian and a naive patient. I was surprised that I could self-refer to an ophthalmologist in the US. In the case of my cataracts, I listened to the doctors and did what they recommended. I didn’t really question things. I had full trust in their abilities.

When cancer happened I suddenly got thrust into a healthcare crisis. I learned a lot about the healthcare system and developed a lot of new skills and literacies around how to manage my healthcare. I learned to advocate for myself, which was difficult at times. But with this self-confidence and self-advocacy came a lower sense of trust and much more awareness of medical errors. I have always seen my doctors as humans, with all flaws that humans have. It is just that now I see them as even more human, and I see them as making even more mistakes. Of course, cancer is also very complicated and not always that well understood. The doctors make their best guesses, but cannot be certain that what they are recommending will work. It is an environment where you want to put your trust in them, but also you are aware that they could be wrong. If you have a good doctor, they will admit it when they are making their best guesses – at least if you are patient like me who asks a lot of questions and does a lot of research.

So, now I’m dealing with a new issue – back pain. Actually it isn’t new, just that now I know what is causing it. The injection that I had a couple weeks ago only provided a little relief. Enough to help me get moving again, but not enough for it to be gone. After my not so great experience with the local surgery center, I really do not have confidence in getting any future care there. I remember telling myself at the time that I was not going to do any more procedures at that center. But also, the injection didn’t really work. It provided some very temporary relief and took the edge off the pain, but it didn’t fix it.

As an empowered patient, I found myself looking into where I could get better care. I always start with Stanford because I’m already in their system. Unfortunately, they don’t seem to have great care in that area. Plus, when I initially reached out I spent forever on the phone, and they never called me back. It didn’t give me any sense that I could get good care there. It is interesting that I do have an association between customer service and level of quality of healthcare.

My internet search, plus a friend’s experience, tells me that UCSF offers a lot more options. I hate the idea of driving up to the city, but in theory I should not need to do it that frequently. I called, the nice person on the phone tried to look me up in the system, but couldn’t get my records from Stanford and PAMF (unfortunately). I needed a referral and to have my records faxed over to them, so they could figure out which doctor was the best one for my particular case.

I found myself nervous about asking the physiatrist who did my injection for my records – not just the details they provide patients, but also the progress notes they keep in their system, so that the doctors at UCSF know what the doctors here think. When I last talked to him, his suggestion was that the next step was a referral to surgery. I really didn’t want to contemplate spinal surgery with there. Fortunately, I have a great primary care physician (PCP) in the same system. I emailed her (using the secure MyHealth system) and asked her to send the referral with all relevant notes over to UCSF. Within a day, I had the referral.

I wonder, had I not had cancer, would I have even considered seeking out better treatment for my back pain? Would I have just accepted the treatment that I’ve currently received which has had limited success? At what point would learned helplessness have kicked in, and would I have just accepted it and not tried to find another solution? I haven’t found a solution yet – so who knows – maybe the time I’m spending trying to get information sent to another set of specialists is a wasted effort. I just know that I have to try.

If you are a cancer patient, has it changed the way you approach other health conditions?

Remission society and mourning my fantasy future

I apologies to those who read all my blogs, as I am cross posting this. I’d love to hear answers from the various readers of my different blogs.

I want to connect two ideas: the idea of remission society as described by Arthur Frank (1995), and the concept of the fantasy future that I learned while on a cancer care retreat at Commonweal (February 2015).

Frank (1995) explains that anyone with a chronic illness lives in the remission society. Frank (1995) describes how “in modernist thought people are well or sick. Sickness and wellness shift definitively as to which is foreground and which is background at any given moment. In the remission society the foreground and background of sickness and health constantly shade into each other” (p.9). I interpret this as the way in which I shall never not be a cancer survivor. Breast cancer is a sickness that will always be part of my identity, regardless of how healthy I am at any given moment. It also will always affect my wellness. I will never be well in the same way I was well before cancer. I may be in remission, where I am not sick but nor am I well. I think of remission as this space in-between, or perhaps above or below, not on the same axis as the well or sick dichotomy.

In order to deal with my emotional wellness, I needed to address the loss of my place in the well category in the well or sick dichotomy. While in active treatment, I was clearly in the sick category; however, once chemotherapy and surgery where done, and the last of the known cancer was removed from my body, I was no longer in the sick category, but also was not in the well category. I was in remission. It was learning of the falseness of this dichotomy that helped me move beyond it. During a group therapy session, the therapist made a reference to the idea of a fantasy future. That is, the concept that all futures are a form of fantasy. We imagine what our future life might entail (e.g. growing old together, remaining in perfect health), but the reality of life is never what we had imagined. A big part of my emotional healing was to forgive my body for the loss of my fantasy future.

Another part of this reality, and one that I’m still working on, is that it should help me focus more on the present. What is in the now, and the short term future, rather than the long term future. This is, in theory, to help reduce anxiety today, but focusing on today rather than focusing on the uncertainties of tomorrow. However, this of course causes the problem I describe in my paradoxical future. Where I struggle with the challenging balance between planning for the future and seizing the day.

Perhaps that is in part what it means to be in the remission society (as opposed to being sick)? When I was clearly sick, my focus was on a very short timespan. I saw life on very short horizons – tomorrow, next week, next month – never more than three months. I just couldn’t plan that far in advance. But now, after I have mostly healed from chemotherapy and surgery (I say mostly, because some of the damage will never be healed), I see the potential for those horizons. It is because I see them only as potential and not concrete that I run into the paradox. Sure anyone who is well will say that they don’t see the future in concrete terms, but in the scale between potential and concrete, a well person sees the future a lot more concretely and someone who is sick, who only has a sense of potential for the future. In this world of remission society, I’m somewhere in the paradoxical middle. Afraid to have a fantasy future, because I got burned by that idea.

Do you have a fantasy future? How concrete is your sense of future?

Feature image CC0 via MaxPixel.

Watch out for my wrath … I’m anti-hormonal

I had written the first part of the title – ‘watch out for my wrath’ on Wednesday when I realized I was way overreacting to things again. I first notice it when I start yelling at drivers for mild infractions, a happened on Wednesday on the way to the gym (my first awareness of being overly emotional/angry). Then on Thursday it was the person at Costco. I was trying to return something. I had a cart because it was heavy. I first went to the in-door to get it tagged, then tried to make my way to the return counter. Unfortunately the line up of people departing was too long (and two deep), so I went out side and tried to get in on the other side of departing carts. The person checking receipts at the door was in my way (just slightly, I couldn’t quite get behind her). I said ‘excuse me, I need to get by’, she ignored me, I said it again, she stepped more in my way, ignored me, and told the next person who was trying to exit (and let me through) that I was ‘going the wrong way’. Which annoyed the hell out of me. Fortunately, I saw an opening in the crowd of outgoing carts, that I could dart in and get to the returns desk. I was most certainly NOT going the wrong way. I complained to the returns person, who was truly really helpful – but I also realized that my emotional response to the situation was WAY off the mark. It should have been merely annoying, rather than something that had me steaming mad.

So, what caused this wrath? Well, I decided on Tuesday that I’d try going back onto an aromatase inhibitor (AI). This knocks my body’s estrogen levels down an extra notch. The lupron that I take (now every 2.5 months) knocks the estrogen to below menopause levels – that and not having any breast tissue – so the AI takes it down another notch. It is not without its side effects. The mood swing was manageable, as I would have mellowed out after a week or so. Unfortunately, the headache and severe brain fog was not. The increased joint pain was also likely to be an issue, especially given the state of my back. So, I stopped.

This AI experiment only lasted two days. At my last oncologist appointment, he said that if the side effects of the AI were negatively effecting my quality of life that I didn’t need to keep taking them. It was kind of odd, as he suggested that, not me. I know many women my age who’s oncologists are pushing them into tamoxifen/AIs even though they are having horrible side effects. I can only imagine that they have other factors at play – younger age at diagnosis, more aggressive cancer, breast tissue (so not double-mastectomy), or a gene that puts them at higher risk of breast cancer recurrence. I don’t know, I just know that my oncologist isn’t saying “you must take this”.

I suggested that I didn’t recall the side effects being that bad (other than the ear popping sensation, which was later determined to be blood pressure med related). We decided that I’d give it one more try. He suggested that I wait for a time when I didn’t have a lot else going on – so I waited until I knew I’d not be travelling for a few weeks, after our out of town guests left, and between deadlines for the class I’m teaching. I’m glad I didn’t try when I was busy as I ended up with two days of getting pretty much nothing done – and realizing that I cannot live with those headaches. I cannot even imagine writing a dissertation when I cannot hold a thought.

And so, after being a little anti-hormonal for a few days, I’m back to my ‘normal’ non-hormonal level of sanity. I will still continue with lupron shots (currently at 2.5 month intervals) – at least while it is not producing any bad side effects – the alternative to lupron is an oophorectomy (surgery to remove ovaries). I’m not keen on that – at least not for the time being. Since I don’t carry the BRCA gene, I’m not at increased risk for ovarian cancer. In theory, after 10 years (or less) I won’t need lupron, and will be able to allow my body to go back to whatever ‘normal’ is for a post medically induced menopausal women.

My paradoxical future

I’ve been struggling a little lately with this thought – how do I envision my future? When I was diagnosed with cancer, I had a clear sense of what I no longer wanted to do. I was blessed with the ability to forget about sunk costs, and just make decisions based upon what I wanted to do during the times when I was not sick or in treatment. Between all the doctors appointments and chemo nausea, I spent time focusing on daily exercise, reading books I wanted to read, and doing things I enjoyed (e.g. camping, sailing).

Now that I’m two years post treatment I find myself struggling to figure out how much I should be planning for the future. I worry about getting old and not have access to healthcare, but then I think, maybe I won’t get old, so why worry. I know that sounds kind of morbid, but there is a reality in it.

I often ask myself “If I only had 5 years to live, is this what I would like to be doing?” (I thought I had written about that before, but I cannot seem to find that post). What I am wondering right now is why is what I’m feeling today different from what I was feeling when I wrote that blog posts (or didn’t write it!).

I’m feeling paradoxical about my future. Part of me is optimistic. I want to plan for a future that has me getting healthier and having the flexibility to do what I want. I want to plan for a future where we have the financial stability necessary to enjoy life without feeling the need to work. And wouldn’t it be nice to know we had access to healthcare as we aged?

Then I find myself wonder, “if I only had 5 years …” and I’m thinking, why I am wasting my time with working (really it is why I am encouraging Scott to keep working), and why don’t we just quit everything and travel and enjoy ourselves. Why not forget that we might have a future, and live life to the fullest right now? Will I end up regretting not taking more time to have fun?

Part of the challenge is, that when you are in that window of “if I only had 5 years…” chances are you are also too sick to enjoy it. The reason you only have five years is because you are sick. And that sick takes away your ability to really do those things that you want to do, so you need to do them while you are healthy enough to do them, but when you are healthy enough to do them your life is so focused on the future.

I recall one of my epiphanies from our time at Commonweal, was the concept of a fantasy future. In many ways, we needed to grieve the loss of a future that was never going to be anyways. That future that I lost was one where we were health and grew old together. It wasn’t a realistic view of the future. I knew that at some time or another something would happen to make one or both of us not healthy. We decided to go on our 16-month bike trip when we did in part because I felt like it was really a “now or never” kind of thing. I didn’t see myself getting healthier in the future. Boy am I glad we did that!

And so, I’m back into that paradoxical thinking. I have a desire to both plan for a long future and I’m feeling the need to seize the day.

For my readers that have deal with critical illness, how do you approach the paradox of planning for a long future and seizing the day?

Feature image CC0 via Pixabay.

Today I put my wedding ring on

I took off my wedding ring in a bit of a panic as I noticed my left arm swelling. That was back at the beginning of October in 2015. Reflecting, I remember it being several months before I got into see the specialist – but looking back on it, it really only took 3-4 weeks – funny how time causes a shift in perceptions of time! Anyways, I remember feeling like it was taking forever to get into see the world expert in lymphedema – fortunately he is also at Stanford so my breast surgeon’s office could provide enough of a squeaky wheel to get me in. I think the sense of time shift was in part because my hand and arm were clearly swollen and I was in a bit of a panic about what to do about it.

I was lucky. I got treatment quickly, but also my issue was minor. In the image below you can see how my left hand is all puffy – that was October 3, 2015. Compare that to today’s feature image.

2015-10-02 13.43.20

It took more that 6 months of daily compression (30-40 mmHg) to clear it up. Now I need to wear sleeves (on both arms because I had lymph nodes out on both sides) when I’m over 5000 feet, flying, or doing exercise that involves strain on my arms. Fortunately, the preventative sleeves are only 20-30 mmHg, so more comfortable. That being said, when my arm was swollen, the compression felt good. Now that the arm is not swollen it is not very comfortable – mostly just a nuisance. The bigger issue, which I’ve lamented on before, is that I cannot take IVs in either arm – that will be a lifetime pain the foot! However, with each IV in the arm, there is a 1% chance of lymphedema of the most nasty kind – causing the effected arm to swell to 3-4 times the normal size within hours.

Recently, someone who just had some arm swelling was asking me about my experience – which made me want to write this. I want this to be encouraging. That being said, I cannot say anything about major lymphedema as I only had minor lymphedema (stage 0/1). I’m told that if it was any worse then it would be “a one way street”, that is, not curable. But for those who are reading this that only have minor swelling, there is still a chance that it can get better. I attribute my healing to compression, but also to swimming. I made a conscious effort to swim at least 3 times per week – swimming about a mile, which meant an hour in the pool.

My arms have been clear for more than six months now, so I finally feel ready to put my ring back on. I had been afraid that putting it on would cause things to swell again – some sort of jinx or something. However, I found that I was missing my ring. I wanted to wear it again. Fortunately, it still fits! And so, I have returned my wedding ring to where it belongs – on my finger!

Do you have experience with minor lymphedema? Did yours get better? If so, how long did it take and what did you do to treat it?

Circle of 6

One of my students is using the Circle of 6 app in the course she is designing. In looking at the app, I found myself thinking that it might be a useful resource for ePatients – especially in the chemo and post-surgery. I totally see times when my husband went to work and I was alone in the apartment. If I ran into trouble I could use the app to say “hey, I need help”.

The app itself was designed to help people who are at risk for experiencing sexual assault, but I could totally see how it might apply to patients.

What do you think? Is this an app that you might find useful?

Back pain (not cancer) and the need to self-advocate

I thought I’d start by saying that this post doesn’t talk directly about cancer – in that my back pain isn’t caused by cancer as far as I know – it is caused by arthritis and spinal stenosis.

My back pain had gotten so bad that I finally made the decision to try the epidural injection. When the shot was first described to me, I was scared away from it. I opted to use anti-inflammatories and pain killers as a way to manage my back pain. It mostly worked for a few months, but then things started get worse. It got the point where I was ending almost every day in pain. Cooking, something that I love doing, was one of the worst offenders – because it involved a lot of standing. My family doc had mentioned that the shot had helped a lot of her other patients, so with that, and the continued pain, I decided to give it a try.

The process turned out to be a little more involved than I thought it would be. I had envisioned going to the doctor’s office, bending forward (or laying down on the examining table) and having a couple of shots placed in my back. I’ve had cortisone shots before (e.g. in my toe before my toe surgery), and so had thought this too would be that simple. Nope. This shot was done in the day surgery center. It wasn’t a surgery, but was still rather involved.

The first point of pain was that I could not eat or drink anything before the procedure – as is common with most surgeries. Not a huge deal. I’ve actually gotten pretty used to it (ugg… hate that surgery has become normalized for me).

The next point of pain involved getting an IV. This turned out to be much more of a production than I expected. I’m not allowed to get IVs in either arm. The lymphedema specialist was very clear on this one. Anytime I have an IV in my arm, there is a 1% chance of irreversible lymphedema. Within hours, my arm could swell to the point of it becoming a medical emergency. It would be much worse than the minor lymphedema that I experienced last year (which took wearing compression garments for 6 months to relieve). And so, this time I was firm with the staff that I could not take an IV in either arm.

None of the nurses were comfortable with the idea of placing an IV in my foot, so the anesthesiologist was called in to do it. Unfortunately, he wasn’t able to find a vein. My veins were hiding away – as I had been dehydrated from the “no drinking” part of the preparation. After confirmation that the IV was required (the doc wouldn’t give the shot without an IV and some sedative), they called in another anesthesiologist who was could place an IV in my neck if needed. After a fair bit of a wait (they said it could be 2 hours, but it turned out to only be another 45 minutes), the new anesthesiologist came in.  I had realized after the first failure to find a vein in my feet, that I had been laying down while he was trying. Laying down makes the veins hide. I had suggested to the nurses that maybe he could try again while I was sitting up, but they opted to call in the second anesthesiologist instead. She listened to me. She had me sit up, and dangle my feet off the side of the bed. After a few minutes, and a failed first attempt, she was able to get the IV in the second attempt.

I couldn’t help think about the difference in approaches – and how each made me feel. I hated the paternalistic bullying that I felt from the first anesthesiologist. His comment to me about how “it is OK to take an IV in my arm” despite what I had told him felt rather condescending. It was like after knowing me for 2 seconds, with little to no history of my condition, he had a better sense of what was good for me than I did. That my opinion on the matter wasn’t relevant to him. That being said, consent was needed, and I would not consent to an IV in my arm, so he had to do it my way.

With the IV in place, I was wheeled in, given a little versed via IV, given the shot, and wheeled out. The entire procedure was maybe 20 minutes. The IV issue meant that I spend 3 hours in the surgery center instead of 45 minutes. Ugg.

The good news is that so far the shot seems to have relieved a lot of my back pain. It isn’t totally gone, but it is no nearly as unbearable as it had been. I’m hoping that with the relief, I can now concentrate on some strengthening and stretching exercises that will reduce the likelihood of the pain coming back. I am hoping that the nerve block (which is what they did) lasts.

I’m not at all happy about all the drama associated with getting the IV. This is something that I’m going to be struggling with for the rest of my life. I need to find a better way to ensure that people know and understand what it means when I say I cannot take an IV in either arm (even from a scheduling perspective, so that they have the right staff available when they schedule the appointment).

I’m also left reflecting on what others who are not so willing to self-advocate do? Would you allow the anesthesiologist to place an IV in your arm knowing that it could cause permanent damage? How do you stay strong and self-advocate when you are also in pain? Why does navigating the healthcare system need to be so hard?