"When we remember that we are all mad, the mysteries disappear and life stands explained." Twain / "I write to keep from going mad from the contradictions I find among mankind - and to work some of these contradictions out for myself." Montaigne / "I write because I have found no other means of getting rid of my thoughts." Nietzsche / "Writing is an integral part of the process of understanding." Arendt / "Writing, to me, is simply thinking through my fingers." Asimov.
Showing posts with label lymphedema sucks. Show all posts
Showing posts with label lymphedema sucks. Show all posts
In the span of one year, from August 2016 to July 2017, I was told I had three tumours in my left breast which led to three surgeries, which provoked lymphedema, and my dad died, and both my adult kids moved back home in the winter, one at the end of a five-year relationship, the other because of a profound mental breakdown that kept him in his room for months afterwards, possibly exacerbated by a family trip I insisted he attend and will forever regret. Both of them were far too forlorn to be able to help with snow shovelling or kitty litter or dishes. They were there for comforting, not to comfort.
I soldiered on through it all, tending to the housework and taking minimal time off work. After the first surgery, I was berated by an administrator, in front of my class, for the inadequate midterm report comments left by the LTO who replaced me, so I was back in the classroom after two days following the next surgery. Getting told was just one too many things to tolerate on top of everything else. Being considered incompetent after leaving copious notes and coming back early felt like an undeserved cruelty I couldn't adequately handle at the time.
What do you do when well-meaning people dear to you advise you to ignore your doctors? (And what if the doctors are wrong?)
I generally rally against non-scientifically verifiable medical claims. I'm pretty open minded and willing to try anything, but I also scrutinize any available research before I write off some new thing as the next solution to everything, like coconut oil or vitamin D. A year ago I wrote about people trying to peddle naturopathic cures to me after I was first diagnosed, but more recently I've been challenged by some scientifically-minded friends and family over some of the changes I've actually adopted in my life after all that cancer stuff.
A while back I wrote about a video comparing Stoicism and Existentialism. The video also touched on different psychology principles developed from each philosophy. Stoicism is easily seen in CBT and REBT, which all start with the premise that when we're upset it's because of our perception of things, not the things in themselves, and we often have an irrational view. Through reality testing and viewing the situation in a detached way we can be less emotionally affected by anxiety around events. It's been very effective in reducing anxiety levels in a good 70-80% of patients.
"The basic thrust of existential
psychoanalysis, if it aspires to be at all existential, must in turn be rooted in the
sensibilities of existential philosophy. That sensibility may be characterized by two
principal themes: a) all human knowledge is rooted in personal experience; b) the
weight of experience is so exasperating that we seek to escape it through self-deception....Every one of us employs deceptions for the same reason. Whenever we're thwarted in our endeavors we feel disappointment and frustration. We may fear that we won't get our way by being honest and resort to guile and manipulation - the principal source of neurotic guilt....On a deeper level it entails the patient's willingness to plumb the depths of experience while accepting responsibility for whatever comes to light, for better or worse."
Instead of our view of externals provoking upset, tumults are from the struggle for people to accept the truth about themselves and recognize their various attempts to escape it. Instead of looking at individual daily triggers, existentialists look at that big one: We search for meaning and purpose in life, but the reality has to be faced - that there simply isn't any. We've been thrown here randomly, and it's up to each of us to make the best of things. The "curative power lay in the patient's capacity for honesty." Upsetting experiences are useful for taking us outside ourselves and possibly provoking a transformation of consciousness that leads to maturation. No pain, no gain. Suppression of experiences is the problem: not an inaccurate assessment, but a refusal to actually see what's there. We need to give voice to our darkest truths, no matter how ugly. From an early age, we devise pleasant fantasies to override potential traumas as slight as disappointment, and then we become anxious that there's something deep within that we don't really want to know. Self-deception and deception by others (as they might help us remain in denial) are part of every issue. We're all inherently devious and deceive one another as a matter of course. The solution is acknowledging our radical freedom, digging past the deceptions to find our authentic selves, and recognizing the absurdity of it all.
Here's an update on what I've learned about lymphedema after an ALND. It's way less scary now that I know how to manage it, but it's still a drag. It takes about an hour away from me every day. I'm just in the earliest stages, and it possible to stay here forever, but not without a bit of effort - something breast cancer surgeons should make sure patients understand. It's all about retraining the lymph flow to take a different path through the body. Lymph nodes collect and clean out toxins (infection, etc.) from segments of the body. The body's divided into 'watersheds' which all get sucked to the closest lymph nodes, but, with some missing, some areas have to be redirected. Here's what's working for me right now, and what I wished I had known straight out of the hospital - just ten things!:
As a means of healing and prettying up my mastectomy scars, I looked forward to a chest tattoo. I envisioned never wearing a bathing suit top again! After my mastectomy, I asked my surgeon about it. His only concern was that it wouldn't look good when I finally gave in and got reconstruction. But, if I'm absolutely sure I don't want recon work done, then I could get the tattoo as early as six weeks after surgery. That would have been done in December, but we were just about to go to Costa Rica, so I postponed it for after the trip. And then I found out I needed more surgery, so I postponed again. I asked the second surgeon if he had any concerns about a chest tattoo, and he said the same thing, just to wait six weeks post-op. He didn't even have concerns about me tattooing my arm if I were so inclined. He said women regularly get nipple tattoos after surgery, which are perfectly safe.
So I had an artist friend draw up this amazing sketch for me based on a pile of random ideas I threw at her:
I've taken many questionable risks in my life. I lean toward leading a life that's lived fully over a safe and secure existence. Most I bounced back from easily from typical childhood falling from trees when I've climbed too high to dropping out of high school and somehow ending up with a Masters. Sometimes it's gone extraordinarily well for me. When an elderly woman next door to me died, I went deep into debt to buy and flip her crumbling house only to find it packed with cash. People thought I was crazy for my efforts to save my school from the chopping block until it all worked, and I'm still there. People were adamant that I can't possibly hold my head high as a teacher and unwed mother back a few decades when premarital sex was shameful, but I ignored them all with the most delightful results. And when my third pregnancy was fraught with complications, and doctors strongly advised me to terminate because of a high risk of Edwards syndrome, I, still single, took a chance and have another healthy daughter to show for it. I've been very very lucky over the years.
But then there are the times that didn't go as well. That time I was convinced I was overinsured and cancelled the insurance on a property, then it promptly went up in flames. That time I got scared of my debt load and hastily sold the slightly charred land - 24 acres with 2000' of waterfront, then soon realized there's nothing else like it out there in my price range. And that time I was convinced by a couple doctors, in opposition to others doctors, equally educated, to get an auxiliary lymph node dissection (ALND), and only afterwards found out about, and succumbed to, the risks of lymphedema.
Like most people, I imagine, I have an easy time ignoring my luck and a really hard time coping when my decisions don't pan out as well. Regret is a bugger.
So I wrote to Stoic advice columnist, Massimo Pigliucci, explaining my surgery situation in very general terms so it could be applied to and/or understood by more people, and I made it sound worse than it is to get a response to the worst case scenario. In general I asked "How were the Stoics so able to get on top of these types of thoughts so well?"
I went on another Wild Women adventure, this time to Georgian Bay to try my hand at kayaking for a change. I was with a whole new group of women, our ages spanning three decades and from a wide variety of professions and backgrounds (and photographic skills - all the pics here are from them). It's always a treat to be on the water surrounded by the giant slabs of rock and tall trees rooted in the tiniest crevices with people concerned for the health and well being of the water, air, and land. We wash on the ground well away from the lake, compost as we go, forgo campfires, and practice no-trace camping. Meetup groups aren't always as environmentally minded. The guides on the trips are exceptional, well practiced in both tripping and diplomacy, and the food is better than anything I typically eat at home.
Wearing the exact same clothes as last time!
On the last trip, I went in order to challenge myself to solo a canoe through the portages so I could travel alone. I've been on my own for almost a decade, and I'll need at least to be able to take the lead if I hope to ever get any of my not-so-canoe-y friends on board. In order to do the things I most enjoy, all by myself became a bit of a mantra.
And then this year of surgeries happened.
Total independence is no longer my goal - can no longer be my goal. I have to work towards working with others in order to get anywhere. This trip came just when I needed it as I teetered precariously on the brink of succumbing to self-pity. My dad, who also left me this year, always saw my quest for independence as a barrier and encouraged me to "let other people shine" by asking for help and sharing the load. I tried to asked for help, and for things forgotten, and for time for a break without feeling sheepish or ashamed of my blunders and inabilities. Interdependence is a hard one for me. And, through it all, I was still pushing myself, able to feel just enough muscle strain at the end of the day.
"Purely physical fatigue, provided it is not excessive, tends if anything to be a cause of happiness; it leads to sound sleep and a good appetite, and gives zest to the pleasures that are possible on holidays." ~ Bertrand Russell
I'm cancer free, but very anxious about lymphedema. It's become a bit of an obsession, so, for anyone googling it, here are all the studies that I really should have researched before consenting to the Axilliary Lymph Node Dissection (ALND) surgery that half my doctors told me I didn't need, and the other half convinced me I should have had done months ago. In all that back-and-forth discussion, nobody gave me the harsh facts about lymphedema. They were all too focused on the cancer, so much so, that I really wasn't able to give informed consent based on their cheery consolations: "We don't see that so much; I wouldn't worry about it." The risk is small, but it's about as small as having cancer in my lymph nodes to begin with (somewhere between 15-30%). And the potential effect on my life is enormous. As far as I can tell, I basically agreed to risk being permanently disabled in order to have peace of mind that my cancer won't spread. Writing about it at least will briefly keep me from insanely measuring the circumference of my arms over and over.
My surgeon has taken a very Epicurean approach. He's quite convinced that there's no rhyme or reason as to why some people get it, so I should just live my life, without a compression garment, and not worry about it unless it becomes a problem. I asked about booking a kayaking trip eight-weeks post surgery, and he gave me his blessing. However, while it's true that there are risk factors beyond my control, there are also some things I can do to prevent this condition - things that patients should be told to do to decrease the risk. I believe he's negligent in not sharing the latest research. All of these doctors were. It shouldn't be up to patients to seek out studies to determine how to proceed. That's why they get the big bucks!!
Okay, so maybe just one more post about doctors... I know it's awfully boring. The last one was in play format to make it more palatable. But it's tedious because I feel so middle class to just now awaken to the fact that the health care system is in crisis. My ignorance is embarrassing. (So is my need to vent.)
The problem I'm going to ramble on about today is that it seems some health care professionals sometimes act out of fear of litigation, or fear of stepping on toes, or something, and it's having a damaging effect on patient care. Erin Anderson wrote about this problem in ERs years ago:
An Ontario study published [in 2011], which looked at 22 million patients visits from 2003 to 2007, found that the longer patients waited in a crowded emergency room – only to be discharged and sent home – the more likely they were to die or be admitted to hospital within seven days. That's disconcerting when we know that more Canadians, unable to find family doctors, are using the ER as an alternative. The problem may get only worse.
I was so taken aback with how crowded the hospitals were. A five hour wait seems to be normal now. And my experience was to just be sent home only to be sent back by my family doctor five days later.
“The culture of medicine has an almost immunological response to error: The first instinct is to send out the antibodies and try to contain the contagion and get rid of it,” Dr. Goldman says, citing a survey of 1,800 American physicians released this month that found 20 per cent had kept mum about a mistake. Clearly they fear lawsuits, but that's not all. “Underneath is this terrible insecurity that many physicians feel, that they'll be caught out on a mistake and people will find out that they are not perfect, and somehow admitting you make mistakes is the first step in being asked to leave the profession. … We're ashamed to talk about it.”
That the second ER doctor I saw actually insisted on a chaperon, a random nurse, to come in while he examined my armpit, illustrates dramatically the fear of lawsuits. We need to get back to trusting one another. It's hard, though, because doctorsdo make mistakes. What do we do about that?
The video is so good, I'll embed the 20 minute talk here. It's all about the problems that happen because of a fear of admitting our mistakes:
Goldman says we need a "redefined medical culture" where physicians know they're human, point out others' mistakes in a supporting way so everyone can benefit, and recognize that since there will always be human error, we need a system of backups to detect the mistakes. Absolutely.
I was in ER a week ago Friday, then again the following Wednesday. Both times they told me I was temporarily fine regardless the pain and swelling, and "it's better if your surgeon decides the course of action." WHY is it better? On my first ER visit last Friday, I specifically asked if there was a way to drain the hematoma - a couple of huge, swollen lumps of fluid and clotted blood in my armpit, big enough to make it necessary for me to hold my arm out from my body, with my hand constantly on my hip, throwing my body on an angle resulting in an ongoing tension headache. The report description: "a large complex fluid collection... measures 7.7 x 5.0 x 7.6 cm." Yes, that says centimetres. But the ER doctor wanted the surgeon to make the call. Just in case. Yesterday, finally able to meet with my surgeon again, he suggested we drain the hematoma, and I'm scheduled in for next Thursday. Yay!
But had the ER doctor felt comfortable making a decision in lieu of the surgeon, then I might be drained and recovering by now. I might have been able to ride my bike this weekend! Instead I'm in a state of coping and tolerating and waiting. And I'm disgusting, constantly dribbling out of an open wound in my side, which is a good thing, but a gross thing.
But I get it. As a teacher, if a student came to me about an essay for another teacher, I would be very hesitant to comment. I won't really know what the teacher's assessing with the assignment, so my advice might put the student down the wrong road. And I wouldn't want to comment in opposition to the teacher for fear of the student perceiving it as a collective undermining of the teacher's evaluation (as they sometimes hope to create). I totally get that. But if the student were struggling, and the teacher unavailable for a time, and they just need advice on something relatively clear and unequivocal, like grammar and mechanics, then I'd be up for the task. And if my decision bought them an extra week of time, then I'd be remiss if I refused to make the call on those semi-colons. I know this is not entirely analogous because it means making the call to have someone stick a long needle in me, but the decision-making analysis - to make a call on a colleague's ward - is the same.
And I really wished I had been more persuasive: complained about the pain more, suggested the surgeon probably wouldn't mind and might love that the ER doc was so competent, that kinda thing.
That ER doc also sent me for an ultrasound to check for blood clots in my bloodstream, which could cause problems. He reported that they didn't find any, and sent me home. But then my family doctor gave me a copy of the report, and the ultrasound technician indicated that that "veins are poorly seen" because of that mass of fluid. So, yes, they didn't find any clots, but apparently they couldn't really see my veins, either. When I mentioned the "poorly seen" part of my test to my medical oncologist the next day, she had them add on a doppler while they're at it next week to check blood flow. But that whole thing gives one pause. It hurts when I breathe deeply or laugh, so, of course I think I've got a pulmonary embolism! My family doctor assured me that it's just the pain from my hematoma radiating, but if I keel over between now and Thursday, avenge my death! No, actually, don't. That's the whole point here. I've seen seven medical professionals in the last seven days, so I'm bound to be fine. Right?
As a teacher, I'm ever relieved that my mistakes don't cost lives. If I give a wrong date for a philosopher, I just correct it the next day. I rarely give out a test without a missing number or a typo somewhere. I check and check, but there's usually one little error in there somewhere. We just all fix it and go on. But the fact that doctors are as fallible as I am is a little panic-inducing.
But imagine if we could be less litigious. I never call Telehealth anymore because they always always tell me to go to emerg. If they tell me I'm probably fine, then they run the risk of me dropping dead, and then getting sued. But it's a useless service if it can't actually perform the function as an alternative to the hospital triage. They need to have the medical know-how, but be as protected as moms are. Moms never get in trouble for giving medical advice. My mom wouldn't let me see a doctor unless my arm was pretty much off. She had a quick remedy for everything. It was mainly bed, a cold washcloth, and some hot lemon that she made from scratch (secret recipe: lemon juice, orange juice, and hot water) that seemed to cure everything. I think my mom could stand at the doors of the ER and convince 70% of the people there to go back to bed. We need a system that can operate like that without fear of reprisal. After some hearty mom advice: clean it off and put a bandaid on it, take a couple aspirin and go to sleep, and, the ever popular, try to go to the bathroom, they can just end every call with, "I think you should go back to bed, but it's ultimately up to you," to shake off some responsibility.
Or maybe I just need my mom right now. Over twenty years gone, and I'm still at a loss to figure out what to do without her. Anyway...
Beyond risking actually making a decision, how the doctor reacts makes a significant impact. We are all human, and we pick up on cues. If they seem annoyed at such a petty case, like the ER doctor did, then it affects how much the patient might complain. If they openly express shock at what they're seeing, like the CCAC nurse and my family doctor did, then they can make a patient absolutely terrified that they're about to drop dead. Many doctors have offered me options stone-faced, making it all my responsibility. I hate that! But if they don't, then they get blamed for a bad call.
The patient makes a difference too. There are all sorts in the ER. As suggesting in the TEDTalk, a hint of alcohol changes everything. But also being a trooper and hiding pain stoically is a bad idea. Being loud and abusive takes up everyone's time and patience, but being completely silent and complacent doesn't work either. You have to be just the right amount of a pain in the ass to get treated instead of just being sent home with some Advil.
When I saw the surgeon after my dramatic week, he seemed a little bit wary of me at first, like he thought I'd be angry with him. He kept thanking me for my patience in all this, and apologizing for how it all went. Apparently all it took to open a little blood vessel was too much arm movement in the first day or two after surgery. I wish I had known why it was important to not move the arm. It would have made a difference for sure. I was careful not to lift anything, but I made myself a salad on day two, and cutting vegetables involves a lot of little motions even though I didn't bear any weight. I was disappointed he couldn't just lance this mass and get it over with, but one more week and one more procedure, and I should be on the mend.
My medical oncologist is so warm that her flip-flops on my case can easily be forgiven. She sounds just like Demi Moore, and she always touches my knee just so. She originally told me not to do the surgery at all because the chances of the cancer having spread were about 1%. Then, a couple months later at a random check-up, she was adamant that I have surgery immediately because she recalculated and found the chances were actually closer to 25% or so. And she was just so sure. And yesterday she told me they were all clear. No sign of cancer anywhere. Yay.
Stage 3 Lymphedema
It's all so bittersweet. Maybe it's just that I love to complain, and hurray I don't have cancer and all, but... I was very close to never having this surgery in the first place. Most of the doctors I saw told me there was no point. Then she convinced me. And then the surgeon shook his head at the naysayers. And then I did it. Now that I have, and found out I didn't need to (except for peace of mind), I will have to worry about lymphedema and infections and any minor thing happening to my left arm for the rest of my life. Apparently, getting lymphedema after this surgery is a total crap shoot. There's no rhyme or reason to it, so my surgeon told me to just enjoy myself. Go backwoods camping and hiking, but be just a little more vigilant about cleaning bug bites or minor scrapes or cat scratches. And keep moisturized to avoid skin peeling around the cuticles. And always use sun lotion. And I am so bad at doing all that!! It means finally breaking my revolting habit of biting my hangnails off! And I still have to take the estrogen blockers, which give me impressive hot flashes. The alternative to the surgery was knowing that the cancer might spread and having to check for recurrences in what's left of my chest.
Holy buyer's remorse, Batman. At least it was all free.
Ack, it's always something! If it's not one thing, it's another. Either you risk having cancer, or you risk having lymphedema. Either way, we're all just bags of bones trying to extend our stay here as long as possible. I'm just grumpy because I couldn't ride my bike on this glorious day!
ETA: Apparently overcapacity at my local hospital and others is becoming an election issue. I wrote this in response:
I'm glad someone's tracking this. It's a mess in there! We need way more money in health care to make sure it rivals the best in the world. But we also desperately need better organization in the system so there's less duplication of services and way less of a run-around trying to get the right treatment. I need to see a specialized physiotherapist that I can only get with referral from my medical oncologist, but I need a referral from my family doctor to see HER, so I'm looking about 4-6 months of waiting before I might actual get into physio so I can deal with an issue that needs immediate attention. I'm actually using Google for all my medical needs! It worked great to help me figure out how to build a studio in my backyard, so this should be fine! This is ridiculous.
I believe my doctors mean well, I really do, but their behaviour is not dissimilar from the crazy-making type of abuse wherein the abuser keeps telling a different story until the victim starts to question their own memory and doesn't know what to believe any more. I'm really glad I write everything down (and tape record it too - but secret-like because that makes them antsy).
I saw a medical oncologist last December. She was last in a long lineup of doctors who had varying opinions about my medical condition. A panel of doctors thought I should get lymph node surgery just in case cancer spread in there, but she wasn't as convinced. She leaned towards an estrogen inhibitor instead. Just one pill a day to prevent a relapse. She left me with a package of information about the drug, Letrozole, and I wandered off to contemplate my options.
Then I came across this article, which doesn't help maintain my faith in the system:
"It is distressingly ordinary for patients to get treatments that research has shown are ineffective or even dangerous. Sometimes doctors simply haven’t kept up with the science. Other times doctors know the state of play perfectly well but continue to deliver these treatments because it’s profitable — or even because they’re popular and patients demand them. Some procedures are implemented based on studies that did not prove whether they really worked in the first place. Others were initially supported by evidence but then were contradicted by better evidence, and yet these procedures have remained the standards of care for years, or decades."
On the advice of a commenter here (and former colleague), I called CAREpath to help with all the differing opinions. They collected all the medical files generated and assessed them to come up with a comprehensive pros/cons list. Literally. They weighted heavily on the anti-surgery side, with a "risk of cure" rate of 97% without any intervention. In their opinion (a different panel of doctors and nurses that's in Toronto), surgery would only have a marginal effect and wasn't worth the general surgical risks, but the hormone inhibitors might be a good idea.
