Category: Opinion

patient generated 5-minute medical history

While I was out hiking today, I got to thinking – thinking about one of the challenges I face with complex medical conditions. One of the problems I run into is that I get so used to things as being ‘normal’ that I forget to include them in my medical history. For example, I have celiac disease. I’ve been gluten free for over a year (yay). I’ve gotten used to the idea of being gluten free. It has become normal for me. So when I’m at a specialist, I don’t necessarily mention it. When I was at the ophthalmologist, I didn’t think to mention it. I have sleep apnea (well really hypopnea – a side effect of my cancer surgery), and I forget to mention it. I forget to mention that I’ve had lymph nodes out on both arms such that I cannot get IVs in both arms. I forget until it becomes very relevant (like when an anesthesiologist is wants to put an IV in my arm).

Throughout my cancer experience, I have learned that I need to be my own advocate. One thing I like to say is that I’m my continuity of care. I am the one variable that does not change regardless of which doctor I’m seeing. Doctors are busy. They see a lot of patients, with a lot of different issues, and yet we expect them to both be experts in the disease they are treating, but also understand our full and complete medical histories. And yet, there isn’t time for that in a typical interaction. Specialists in particular have tunnel vision. That is what makes them specialists – they get one thing very well, but they do not necessarily get complexity. I actually talk a little bit about this in an article I wrote for In-Training – where the resident wasn’t willing to admit she didn’t know about breast cancer – I was at a sleep clinic, I didn’t expect her to know, but I did expect her to admit she didn’t know, so that I could give her details that might actually be relevant to why I was at the sleep clinic.

Medical students and residents learn to take patient histories. They learn to go through a script asking all the questions they believe are relevant. As I patient with complex medical issues, I often find that is exactly the situation where I forget something – which might not matter, but might also be rather significant. It is with that, that it occurred to me that as a patient I should spend some time creating a patient generated 5-minute medical history – maybe a two page written document that summarizes my issues. That isn’t a lot of space – but it doesn’t need to be. It needs to say the most important parts about diseases, current medications, and any major past medical treatments.

This could go a long way to ensure that I don’t forget something important. It doesn’t replace the patient history / interview that the doctor does – it just provides a more wholistic view of my health – something that a specialist may not see. My pediatrist may not see or care that I have sleep apnea, but it becomes relevant when we start planning a procedure that involves twilight sedation (for any sedation, because of sleep apnea an anesthesiologist is required to be present). My sleep issue is not necessarily relevant to my toe pain, nor something that the pediatrist would think to ask about, but it becomes relevant when the doctor is recommending a treatment plan.

And with that, I now have a task on my to do list to create a 5-minute medical history for myself. What type of information do you think it is important, as a patient, to include in a patient generated 5-minute medical history?

Fri October 6, 2017
SF Pride

Yesterday, my hubby and I and friends got a chance to march in the San Francisco Pride parade with the Bay Area Young Survivors – and organization that provides support for those diagnosed with breast cancer under the age of 45 (ish). The group is an intentionally open organization – often looking at which gender pronouns we use, and how our language choices are either inclusive or not so much. Marching in Pride tells everyone who sees us that we are a welcome organizations.

Our signs were interesting – in addition to the equal rights posters, we also had many saying things like “F$ck Cancer”, as well as a memorial picture of the very remarkable Janet Sollod, and a few more about the impacts of healthcare.

What really struck me was that when the crowd saw us, they often switched from cheering to clapping. It was really powerful.

This was also my friend Lori’s birthday weekend – so I’m so glad I was able to march along beside her.

Mon June 26, 2017
Carlos whoever you are, you are an ass!

This afternoon, after travels (hers then mine), progression (hers), stupid chemo side effects (hers), and colds (mine), Lori and I finally managed to get our schedules lined up for a hike. We hike for a variety of reasons. We both enjoy it. Hiking helps Lori feel better when she is having a crappy day (or week or month), and helps replenish her energy when it is running low. It is especially important this week, as she prepares for radiation treatment for a tumor in her spine (which will hopefully mean she is in less pain, and up for more wonderful hikes).

It has been a while, since we last hiked. Lori’s latest progression means she is taking a higher dose of the chemotherapy she is on. One of the side effects is that it makes the skin on her hands and feet really thin (she no longer has fingerprints, and informs me that one reason we have prints in the skin on our feet is so that we don’t slip on wet surfaces – one of those things you don’t realize until you no longer have the prints). The thin skin on her feet has led to cracking and bleeding. This has made it difficult for her to walk without pain – that and a particular “hot” tumor in her spine. With this in mind, we opted for the easier hike. One that involves parking in the lower free parking lot, and follows the creek on a well established trail. This trail also has lots of benches, strategically placed, which made it the ideal hike for me when I was recovering from breast cancer surgery and chemotherapy. The lower parking lot is almost always full, however there are a couple of handicap spots which are often open. I used to park there all the time when I had a permit. Being able to park there meant that I could walk/hike. Otherwise, I would not have been able to do it. I no longer have a permit, but Lori has one. It means that we can hike places that otherwise we could not – for lack of a parking spot.

I like hiking with Lori because I enjoy her company. We both seem to hike at about the same pace. We spend the entire time chatting away, and often don’t notice how far we hiked. Today was one of those days. We ended up hiking 5 miles (8.5 km) and forgot to take a selfie at the top of the trail – so we took one at the bottom.

As we were driving out of the parking lot, we noticed that someone (Carlos the Ass) left a message, tucked in on the wiper of Lori’s car. We can only guess that it was written as we were heading out for our hike, as it is the only time people would associate us with the car. Anyways, Carlos the Ass writes “Hello, We are impressed with your hiking skills. Not too shabby for being ‘handicapped’ and all. Best Carlos [the Ass]”.

Lori gets this a lot. She doesn’t always “look” sick. At our other favorite hiking place, we have gotten dirty looks, and sometimes even snarky comments made under someones breath – intentionally just loud enough for us to hear. Usually when that happens Lori blurts out something that hopefully makes the person feel like sh## for being so insensitive. For example “I’d gladly trade in the terminal cancer for the parking spot”. Fortunately, she no longer cares. She doesn’t take sh## from anyone anymore. Her life is going to be too short to deal with assholes.

It still annoys me. It annoys me enough that I had to write this post. Disability is not something that is clearly visible. Interestingly, one of our many discussions on our walk was the challenge with how dealing with airports when standing in line is excruciatingly painful – and not in the annoying sense, in the physical sense. There is a lot of ‘but you don’t look sick’. There is a huge misperception of what sickness looks like. People seem to like judging others.

Anyways, back to my rant about Carlos the Ass. It seems that he felt it necessary to find a pen and a scrap of paper (it was written on the back of a grocery store receipt that he clearly had hanging around his car). It extra pisses me off because it was Lori’s permit – Lori has terminal cancer and no clue if she will be alive in 3-6 months. Every cancer patient I know (terminal or otherwise) would gladly trade in the handicapped permit if it meant they didn’t have to deal with cancer, treatment, and its aftermath.

So please, don’t be an ass. There are way too many of them in this world already!

Sun June 11, 2017
National cancer survivor day #idontgetit

I may have said this before, but … I just don’t get it. I don’t understand what it is I’m supposed to be “celebrating” on this day.

Yes, I am a cancer survivor, but all this day does is highlight how my friends with metastatic breast cancer will not survive – they will not be cancer survivors – as their cancer is terminal.

I only know of it because I see it on my Facebook timeline.

Do any of my cancer survivor readers get this? Is there something special you do for National Cancer Survivor Day?

Sun June 4, 2017
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.

Sun May 21, 2017
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?

Fri April 28, 2017
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?

Thu April 6, 2017
Living Pathography – An Open Dissertation blog

I have decided to brush off the domain I had originally setup for my dissertation. I have much better sense of where the project is going – so I’m using that blog as a way to share my writing as I write, and my field notes and ideas as they occur to me. It is a living blog.

David Elpern at http://pathography.blogspot.com/ defines pathography as “a narrative that gives voice and face to the illness experience. It puts the person behind the disease in the forefront and as such is a great learning opportunity for all care givers and fellow sufferers.” I chose Living Pathography for the domain name because all the current work on pathography relates to books rather than blogs. I think of blogs as living books – ones that can be updated regularly – but also ones that contain reflections of the experience as it is happening, rather than the post-processed reflective version that is presented in book form. There are less constraints when blogging, allowing the writer to express illness in a raw and authentic way, which provides a layer of learning that can be lost when the experience is distilled into a book narrative.

I will cross post things here that may be of interest, but also, there are things that happen on this blog that are completely unrelated to my dissertation. I’ll try to keep the academic language (like the above paragraph) to a minimum on this blog, respecting that the focus of this blog is my emotional and physical journey. The new site will focus on my dissertation as well as other academic papers, conference presentation, or book chapters associated with health blogging.

If you are interested in following specifically my dissertation journey, I invite you to follow me at http://livingpathography.org or on Facebook at: https://www.facebook.com/livingpathography/

Thu February 16, 2017
Driving, chemobrain, and respectfully acknowledging side effects

While driving back from a nice long weekend at Yosemite, I found myself singing along to music while simultaneously navigating through an interchange of highway on and off ramps, to get to the right place. What struck me then, was that I must be getting back to some form of cognitive health.

Cancer plays havoc on your cognition. Furthermore, chemo can totally screw things up. Chemobrain is real! In reflecting on my chemo brain, I often used what I could or couldn’t do while driving as a gauge to how I was doing. At first, I couldn’t drive with music. Then I couldn’t drive with anyone in the car. One particularly scary drive was when I realized that I was relying on everyone else to not hit me, as I couldn’t react to what was happening around me. I knew then that I had to stop driving until I was done with that evil chemo regime.

But after chemo, and then surgery, I found my ability to drive come back slowly. First is was driving alone without music, then driving with music occasionally – like on the highway when I didn’t need to do any navigation, then driving with someone else in the car but no music, etc. So, it was amazing to find myself in a position of driving in the car, navigating through on-and-off ramps, and singing along to the music.

I was thinking also about one of my pet peeves. When I say something about “chemo brain” and someone dismisses it as “aging”. Like when I try to explain that I cannot find a word and they say “I have that too, it is just aging” … and then I need to explain that chemo brain forgetting a word is actually very different than aging. Age related forgetting (or actually the forgetting that happens to many people) is like a word is at the tip of your tongue. With enough concentration or thinking, the word comes to you. I get that too. But chemo word forgetting is different. It is more like the word is completely gone. Until someone says it, or until you read it someone else, it doesn’t just spontaneously come back to you. It is very different, and if you haven’t experienced it you will not really get it.

But the pet peeve isn’t so much about the lack of understanding of the actual thing – is it more the dismissing of my issue as if it were not important. It is said as a way to silence me (or the person saying it). So rather than acknowledging and saying something like “that must suck”, it comes across more like “stop whining” or “what you are feeling isn’t real”.

Unfortunately, too many of the challenges with being a young women who has had hormone positive breast cancer is that too many of my symptoms and challenges look like “aging”. They are dismissed as ‘aging’ related – by doctors, by friends, by family. It happens all the time. The thing is, I shouldn’t be having these side effects at my age! They are not age related! They are breast cancer treatment related. That is different. There may be nothing that can be done about them, but they are still there and they are still real. My advice to friends, family, doctors, etc. is to acknowledge it. A simple “that must suck” would do.

So, the cognitive declines associated with chemotherapy are starting to wear off. I’m starting to be able to deal with things that I couldn’t deal with during and immediately after treatment. Slowly things are getting better. Now, this off course is just in time for me to be going back on my next regime of hormone therapy – which blocks my body’s ability to produce estrogen, and mimics a lot of the symptoms of menopause but to a much higher, more severe degree. So, I will be experiencing a lot of what might look like ‘normal age related symptoms’, but they won’t be ‘normal’. They will be treatment induced. And if I complain or state that I’m having a challenge related to chemo brain or cancer treatment, don’t dismiss it, acknowledge it. Tell me it sucks, and then we can move on to having a normal conversation!

Feature image (c) Rebecca J. Hogue

Mon February 6, 2017
Neuropathy update

It has occurred to me that it has been a long time since I’ve talked about my chemotherapy induced peripheral neuropathy. At about this time last year I saw a pain doctor. Just in passing he mentioned the option of a 24-hour time released gabapentin (known as Horizant). It often isn’t mentioned because it isn’t on most insurance formularies (meaning it costs patients more). One big reason to chose it is that it reduces pill fatigue. One point that insurance companies and doctors seem to miss that is that it works a lot better. It is unfortunate that the efficacy of a medication isn’t taken into account because of insurance companies, and it really annoys me that insurance companies don’t take into account the efficacy of the medication. It is one of the things that angers me the most about this healthcare system.

One of the biggest advantages to a time-released version of the medication is that it is always in your system. With the other gabapentin, I’d need to take 4-pills every 6-hours for it to be equivalent. That means waking up in the middle of the night. On gabapentin, my neuropathy was always worse first thing in the morning. That was, in part, because after 8-hours of sleep I no longer had gabapentin in my system. Gabapentin also makes some people drowsy. So taking it 4-times per day can be really disruptive. The horizant makes me drowsy, so I take it at dinner and it helps me sleep at night (a double win because hormone therapy mucks with sleep patterns).

For me, Horizant has been a miracle drug. I’m willing and able to pay the extra for it (it isn’t cheap). It means that when I wake up first thing in the morning, my feet don’t hurt. It also means that my feet don’t hurt when I get up after sitting. It used to be that the first 10 steps were filled with burning pain in my feet.

I’m noticing that my neuropathy is improving. I still go through phases where things burn, but then they are much less intense. I notice that I have much more feeling in my lower legs and feet. This makes getting IVs in the legs a lot more painful, but that is a worthwhile trade-off for improved neuropathy. It used to be that I would lose feeling in my feet after 20 minutes of hiking. Now I don’t even notice my neuropathy until around the 90-minute mark. And even then, what I’m noticing is not nearly as bad as it used to be. So, I’m happy to report that my neuropathy is improving.

In January, I’ll talk to the pain doctors again. Anytime I mention going off of the Horizant, it is suggested that I stay on it. It is also used for other medical conditions that I have, like back pain from arthritis, reducing the side-effects of hormone therapy (e.g. making hot flashes less severe, treating restless leg syndrome), and treating post-surgery fantom pains. My healthcare team feels it is doing more for me than just treating my neuropathy.

And so, as this year is coming to a close, I’m happy to report that my neuropathy is doing much better. I’m finally starting to feel like I’m getting at least some of my health back. I’m hiking further than I ever used to – with a 10km (6-mile) hike not being out of the ordinary.

Sun December 18, 2016