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GRIZZLYNATION 2015
An Open Letter to Doctors from a Scared Patient in Scared Times.The Best Doctors I've had. And the Worst.
Last post: My Story: Next One
Being a patient isn't easy. Especially when you're in hospital in an emergency situation, as I was last week... For those who didn't know - I presented to emergency last week, midway through chemo, with shortness of breath and they ended up finding a new cancer on my fourth rib on the right. Don't worry though - I'm fine!
They removed the lesion that was there and the worst case scenario - a relapse of my very aggressive original disease - Acute Myeloid Leukaemia - in the bone has been essentially ruled out and being localised (there are no other areas of my body with this kind of look on scans), whatever the tumour is, that'll likely be all that's required in terms of treatment.
During that tumultuous week, my first where I'd gotten major surgery come to think of it, I probably met as many doctors as I had since being diagnosed 4 years ago. I definitely would have if you took out med students, interns and residents from the equation and just left the specialists. I met 12 anesthetists alone. By the time you're reading this... I'd probably have met 14.
And over this last pressure-filled week, I've had some of the best and worst experiences with my doctors.
But let's save the best for last...
I'd like to say first that these doctors I've been under - I don't believe are bad doctors. Skill and knowledge wise, they're far from deficient. Indeed, one is apparently one of the best in his field; one of three who even performs the surgery I needed last week in my nation. And they're not horrible people either - I've come across worse, more abrasive doctors in my time, heard of many more horrible experiences, circumstances, rebukes from doctors and regular people to young cancer patients in particular - I probably came across these guys at bad times, in time-constrained circumstances or something of the like.
Luckily, I'm a person who can cope with that anxiety well. But not everyone can. So at the very least... for those doctors, future doctors, nurses or other healthcare staff reading on - this can serve as a lesson.
When I was told I had a lesion on my fourth rib - one that may be cancerous, as you can imagine, I wanted to see exactly what it was. Or at least learn more about it.
I was admitted to hospital on Tuesday morning, and found out about this lesion that afternoon. Immediately on hearing this, and learning that there was a spot in that same area last year - I wanted to see the scans or reports myself. I struggled (I was still cramping and short of breath) and limped my way to the nurses and doctors station and demanded to see my reports or my doctors as soon as possible.
After a while, the resident on my medical team walked in and told me the bad news. He confirmed that there was some kind of lesion, but when it came time to seeing the report... he couldn't give it, as "Only a specialist could give such reports to patients, according to New South Wales Policy." I was pissed. Angry,,, beyond words... They were my scans... my reports... about my body. Why was I not allowed to see them, and someone else was in the first place? Shouldn't it be the other way around?
But I guess it wasn't his fault. And I guess I could see a potential reason for such a policy. You wouldn't want a patient to worry themselves too much, or be disclosed information without knowledgeable guidance.... Fair enough.
"Could you call or page my specialist so I could see them?"
No. That was for some reason or the other impossible too... He was probably scared of bothering him for this tiny thing. The systemic bullying, and even sexual harassment that came with the doctor hierarchy may have had something to do with this. If the consultant on call was such a bully, he may have had to cop a huge tongue-lashing from him, at the very least. Perhaps the laws were extremely restrictive. In any case, it wasn't him I was angry at. I got where he was coming from, and saw that he had no power to change things here. So I tried everything; calling my own specialist on his line (he wasn't in the office and couldn't answer), calling my GP (who's amazing and has helped me often in crisis situations in the past) and even calling and asking other doctors, including specialists at other hospitals, to see if there was something I could do.
Eventually, I resigned myself to waiting 'til tomorrow, for my consultants' usual Wednesday "Grand Round", where he and those under him would review all patients under their care for the report.
And the next morning, I got an absolute 'Yes. Of course you can see your reports" from him.
That's when I met annoying doctor number 1. The senior registrar (the level just under consultant) under my consultant was busy. I could understand that. She may have had a few long cases, or emergencies under her belt.
But for two whole days, two painstaking days of me asking her, the residents under her, my nurses, my doctors and my consultant again on the phone again and again, I didn't get to see that report. I didn't know for 2 days how large the lesion was. What caused them to suspect what they suspected it was. How much of my body would be deformed; cut away in this surgery that was being planned there for it!
All I had to work off in this time were off remarks from my haematologist about a "lesion on the anterolateral aspect of the fourth rib" that radiologists suspected was a "chondrosarcoma" that the orthopedists (bone surgeons) recommended required me to go straight to "a rib resection" rather than a biopsy first. Words I could luckily grasp and understand, with my medical knowledge, but ones that would have left most other already anxious, suffering patients even more distressed.
When we asked her why the reports hadn't been disclosed thus far, by anyone else, including the anaesthetists, orthopedists or the pain team who'd all been by by that point on her own rounds (which can happen at anytime in the day by the way - they often catch you when you least expect it, one after the other) later that day, she responded, brashly, dismissively even, to my obviously anxious mother, that "It's because we're the haem team." before brushing on to the next question, failing to even acknowledge our plight.
After a rushed consultation (we were her last patient of the day, and we'd seen her laughing alongside colleagues later on; so she wasn't rushed by other patients), a non-commital "Yeah, we'll get on to it," and a "hmph" and a small turn, she was out of the room, leaving us even more confused than when she entered.
The next day, early, before 7am (breakfast is served at absurdly early hours at St Vincent's), we had more of the same. And it was only after cornering my haematology consultant onthe phone that we finally had the original resident, who'd initially been the one to refuse our seeing the reports, come in, show and explain the results of that CT scan to us. A mere hour before 5am Friday, the hour at which hospitals, for all intents and purposes, close.
Now I understand that doctors are busy. I understand that they don't always have time, that they may have emergency situations and that they have a LOT of work to do. I understand that some patients are placed on higher priorities than others; indeed, rather than get angry, I'm a patient who's grateful if he's seen last, as that means I'm probably most well off, medically.
But though these things may seem like little, pestering requests peppering your busy schedules as doctors, they mean EVERYTHING to a patient going through tough times. Especially those newer to hospital experiences. But as you can probably gather... veterans like me get scared and anxious too.
The sad thing is, teams often have these informal priority lists assigned to patients to get procedures and scans during in-patient stays done, but the little requests, and sometimes even the less likely, yet all-too-possibly correct tests aren't done. Because in addition to my not getting these reports, my echocardiogram (an ultrasound of the heart) was put to the back of the list so often, after they ruled out most of my major causes of shortness of breath, that it wasn't even done until I specifically reminded the team about it. They'd simply forgotten.
The chances of there being a pericardial effusion causing that (they ultimately ended up pinning that initial shortness of breath that brought me in to my cramping as all the other tests came back negative) initial haggard breathing was unlikely, the chances of it being severe minimal considering my lack of the Beck's triad of dangerous clinical signs. But it was still something that could have played a part in my initial presentation. Something that could have blown up in my face considering the fact I was getting major surgery in the chest later that week.
I understand there may not be time to answer everyone's tiny little questions, or to grant every little request. I understand that there are days where you may be overwhelmed, where the concerns of a pushy family whose child has what's likely a slightly cold seem irrelevant next to your failure to resuscitate a young man after an accident. I know you're human, and can't do everything...
But you don't need to. Delegating the less necessary concerns, the less-likely-to-be-severe complaints of patients and their requests, to those below you in the medical team, those secretaries or clerks assigned to you, or to a colleague with more time on his hands is one way you can make the lives of both you and your patient better without impacting your own. If it does require a little effort on your behalf, then do document those "less urgent" concerns somewhere - maybe even design a symbol or mark to distinguish them from the rest of your notes - and try to get back to them later when you get a chance because believe me - it's not just your patients who benefit from this - it's you too. The small things can make the biggest difference to a patient going through what's often the worst days of their lives, and if you can resolve those problems for people every ordinary day of your life... then your own life will be the richest of anyone's in the world.
They removed the lesion that was there and the worst case scenario - a relapse of my very aggressive original disease - Acute Myeloid Leukaemia - in the bone has been essentially ruled out and being localised (there are no other areas of my body with this kind of look on scans), whatever the tumour is, that'll likely be all that's required in terms of treatment.
During that tumultuous week, my first where I'd gotten major surgery come to think of it, I probably met as many doctors as I had since being diagnosed 4 years ago. I definitely would have if you took out med students, interns and residents from the equation and just left the specialists. I met 12 anesthetists alone. By the time you're reading this... I'd probably have met 14.
And over this last pressure-filled week, I've had some of the best and worst experiences with my doctors.
But let's save the best for last...
I'd like to say first that these doctors I've been under - I don't believe are bad doctors. Skill and knowledge wise, they're far from deficient. Indeed, one is apparently one of the best in his field; one of three who even performs the surgery I needed last week in my nation. And they're not horrible people either - I've come across worse, more abrasive doctors in my time, heard of many more horrible experiences, circumstances, rebukes from doctors and regular people to young cancer patients in particular - I probably came across these guys at bad times, in time-constrained circumstances or something of the like.
But that still doesn't ease the pain, or worry I felt because of them...
Luckily, I'm a person who can cope with that anxiety well. But not everyone can. So at the very least... for those doctors, future doctors, nurses or other healthcare staff reading on - this can serve as a lesson.
When I was told I had a lesion on my fourth rib - one that may be cancerous, as you can imagine, I wanted to see exactly what it was. Or at least learn more about it.
I was admitted to hospital on Tuesday morning, and found out about this lesion that afternoon. Immediately on hearing this, and learning that there was a spot in that same area last year - I wanted to see the scans or reports myself. I struggled (I was still cramping and short of breath) and limped my way to the nurses and doctors station and demanded to see my reports or my doctors as soon as possible.
After a while, the resident on my medical team walked in and told me the bad news. He confirmed that there was some kind of lesion, but when it came time to seeing the report... he couldn't give it, as "Only a specialist could give such reports to patients, according to New South Wales Policy." I was pissed. Angry,,, beyond words... They were my scans... my reports... about my body. Why was I not allowed to see them, and someone else was in the first place? Shouldn't it be the other way around?
But I guess it wasn't his fault. And I guess I could see a potential reason for such a policy. You wouldn't want a patient to worry themselves too much, or be disclosed information without knowledgeable guidance.... Fair enough.
"Could you call or page my specialist so I could see them?"
No. That was for some reason or the other impossible too... He was probably scared of bothering him for this tiny thing. The systemic bullying, and even sexual harassment that came with the doctor hierarchy may have had something to do with this. If the consultant on call was such a bully, he may have had to cop a huge tongue-lashing from him, at the very least. Perhaps the laws were extremely restrictive. In any case, it wasn't him I was angry at. I got where he was coming from, and saw that he had no power to change things here. So I tried everything; calling my own specialist on his line (he wasn't in the office and couldn't answer), calling my GP (who's amazing and has helped me often in crisis situations in the past) and even calling and asking other doctors, including specialists at other hospitals, to see if there was something I could do.
Eventually, I resigned myself to waiting 'til tomorrow, for my consultants' usual Wednesday "Grand Round", where he and those under him would review all patients under their care for the report.
And the next morning, I got an absolute 'Yes. Of course you can see your reports" from him.
Great, right?!
That's when I met annoying doctor number 1. The senior registrar (the level just under consultant) under my consultant was busy. I could understand that. She may have had a few long cases, or emergencies under her belt.
But for two whole days, two painstaking days of me asking her, the residents under her, my nurses, my doctors and my consultant again on the phone again and again, I didn't get to see that report. I didn't know for 2 days how large the lesion was. What caused them to suspect what they suspected it was. How much of my body would be deformed; cut away in this surgery that was being planned there for it!
All I had to work off in this time were off remarks from my haematologist about a "lesion on the anterolateral aspect of the fourth rib" that radiologists suspected was a "chondrosarcoma" that the orthopedists (bone surgeons) recommended required me to go straight to "a rib resection" rather than a biopsy first. Words I could luckily grasp and understand, with my medical knowledge, but ones that would have left most other already anxious, suffering patients even more distressed.
When we asked her why the reports hadn't been disclosed thus far, by anyone else, including the anaesthetists, orthopedists or the pain team who'd all been by by that point on her own rounds (which can happen at anytime in the day by the way - they often catch you when you least expect it, one after the other) later that day, she responded, brashly, dismissively even, to my obviously anxious mother, that "It's because we're the haem team." before brushing on to the next question, failing to even acknowledge our plight.
After a rushed consultation (we were her last patient of the day, and we'd seen her laughing alongside colleagues later on; so she wasn't rushed by other patients), a non-commital "Yeah, we'll get on to it," and a "hmph" and a small turn, she was out of the room, leaving us even more confused than when she entered.
The next day, early, before 7am (breakfast is served at absurdly early hours at St Vincent's), we had more of the same. And it was only after cornering my haematology consultant onthe phone that we finally had the original resident, who'd initially been the one to refuse our seeing the reports, come in, show and explain the results of that CT scan to us. A mere hour before 5am Friday, the hour at which hospitals, for all intents and purposes, close.
Now I understand that doctors are busy. I understand that they don't always have time, that they may have emergency situations and that they have a LOT of work to do. I understand that some patients are placed on higher priorities than others; indeed, rather than get angry, I'm a patient who's grateful if he's seen last, as that means I'm probably most well off, medically.
But though these things may seem like little, pestering requests peppering your busy schedules as doctors, they mean EVERYTHING to a patient going through tough times. Especially those newer to hospital experiences. But as you can probably gather... veterans like me get scared and anxious too.
The sad thing is, teams often have these informal priority lists assigned to patients to get procedures and scans during in-patient stays done, but the little requests, and sometimes even the less likely, yet all-too-possibly correct tests aren't done. Because in addition to my not getting these reports, my echocardiogram (an ultrasound of the heart) was put to the back of the list so often, after they ruled out most of my major causes of shortness of breath, that it wasn't even done until I specifically reminded the team about it. They'd simply forgotten.
The chances of there being a pericardial effusion causing that (they ultimately ended up pinning that initial shortness of breath that brought me in to my cramping as all the other tests came back negative) initial haggard breathing was unlikely, the chances of it being severe minimal considering my lack of the Beck's triad of dangerous clinical signs. But it was still something that could have played a part in my initial presentation. Something that could have blown up in my face considering the fact I was getting major surgery in the chest later that week.
I understand there may not be time to answer everyone's tiny little questions, or to grant every little request. I understand that there are days where you may be overwhelmed, where the concerns of a pushy family whose child has what's likely a slightly cold seem irrelevant next to your failure to resuscitate a young man after an accident. I know you're human, and can't do everything...
But you don't need to. Delegating the less necessary concerns, the less-likely-to-be-severe complaints of patients and their requests, to those below you in the medical team, those secretaries or clerks assigned to you, or to a colleague with more time on his hands is one way you can make the lives of both you and your patient better without impacting your own. If it does require a little effort on your behalf, then do document those "less urgent" concerns somewhere - maybe even design a symbol or mark to distinguish them from the rest of your notes - and try to get back to them later when you get a chance because believe me - it's not just your patients who benefit from this - it's you too. The small things can make the biggest difference to a patient going through what's often the worst days of their lives, and if you can resolve those problems for people every ordinary day of your life... then your own life will be the richest of anyone's in the world.
Making your job your profession as a doctor is vital not just for job satisfaction, it could have huge mental and physical impacts on YOUR life too.
I've dished out a lot of dirt now... and this is just annoying Doctor #1. I could go into Doctor Annoying Number 2 into extravagent detail; and some of the words, some of the things I've faced from doctors in the past, I could go on for pages about; but I feel I've done enough of that for now. Suffice to say the phrase "typical Surgeon" could do Annoying #2 justice... you may just hear the goss on him later if he happens to do something else very alarming today.... but I understand how he can be very busy too.
But though I've had many bad experiences with doctors at various stages, in various circumstances, in the past, I've been lucky enough to have most of my experiences with doctors positive in nature.
The words that changed my life were uttered from my first haematology doctor's mouth, the conversations we've had over things ranging from life-and-death decisions, the future of medicine and treatments, to exchanges of fishing tales and adventures tantalisingly human in nature. The confidence my transplant specialist had in me to choose the medication that's kept me alive today and then fight for my right to get it completely subsidized came down to an email exchange between him and I that he was happy to facilitate in his own time.
I've been blessed with not only the best parents, siblings, nurses, staff and friends in the word, but also some of the best doctors too.
But by far the most human of these has been my opthalmologist; my eye doctor, and my first doctor, who'll always have a special place in my heart.
That ophthalmologist though, she showed just how amazing she was in this last tumultuous week too.
That ophthalmologist though, she showed just how amazing she was in this last tumultuous week too.
My eyes, as most of you regular readers would know, have gone through a lot in the last half year or so. I've lost almost all my vision in my left eye permanently to a "central retinal venous occlusion", whose cause we still don't know and then, just over 3 months after that, almost lost my right eye as well to the same reason.
My reflections... my feelings as I went through what I felt may well have been the last time I saw anything.
During this second time in particular, as I was rushed to the hospital, experiencing the same things as I did the first time, seeing the same results from the same tests coming back, I was in one of the most sullen moods of my life. I knew what was coming. And I knew that there wasn't must we could do to change the results of it. All I could do was sit there and wait for what could have been the last flashes of lights I'd ever see go by in this alien, dreary waiting room.
Yet when I called Claire during that time... she showed nothing but concern and care for my welfare. Me. Just one of who knows how many patients she had she showed love and concern for where she had every right to be peeved, pissed off and even violated for being called up at 5am with information of this going on.
During that crisis itself, and in the weeks following up, she was her usual amazing self. Luckily, the vein blockage that caused my left eye to go blind had cleared for some unknown reason and I hadn't lost both my eyes. And in the weeks following, she was happy to see me every week during this time, and even offered and decided to see me for free in this period.
Every appointment, as usual, we'd discuss the findings as she saw them, and she did more than explain the goings-ons of my eye to me as the details emerged on the screen, she made sure mum and I both could see the differences; the changes in the scans, actively involving us in the process and making us feel like we had control of the situation. Something many, if not most patients, wish they had in their interactions with doctors. Something that's indeed, been linked with better outcomes and survival times in diseases ranging from colds to kidney failure to advanced cancers.
We couldn't thank her enough for what she'd done for us in those last few weeks/months. She'd transformed this tragedy that would have stayed with me for life into one of the most inspirational experiences of my life. And we thanked her in kind by giving her a pair of gold bauble-style ear-rings; a wedding present to her (she'd recently been engaged we found out from another patient of hers), as during her eye examinations, she always had me look at her earrings, and I always made sure to point out the style she'd chosen to wear on the day (she always picked quirky and extravagent ones to "give her patients something to look at).
We gave that to her a month ago, looking forward to my next 6 weekly appointment.
But somehow, during the crisis that was last week, she got wind that I had yet another cancer. And when I saw her face in my window the day I'd gotten my bone scans (indeed, she was the one who deciphered them for me, and let me know that they confirmed it was another cancer I had), I was shocked. I couldn't believe it at first. But there she was, the earrings we'd gotten her glimmering in the light, smile bright as ever, beaming at me, with flowers in hand.
"How come you're here? How did you know what was up?"
"I'd heard about this happen, and I wasn't far away. I live right in the middle of Sydney, really, so it wasn't that hard to pop in." she exclaimed cheerily, handing me a set of fake flowers and then taking them from my hands, still limp from disbelief and organising them on my noticeboard of cards and encouragement with my similarly awed mother.
I was astounded. I know personally the amount my doctors, my two haematologists leading my treatment, cared for me, as they cared for any of their patients from deep conversations with them about treatment and just life. But even THEY hadn't gone this far to show their concern. Now that I think of it though... I do remember my first doctor, the one who'd told me those words, "The Good news is you're 17 and you have leukaemia, but the bad news is... you're 17... and you have leukaemia," walking in shyly to see me and wish me well before one of my procedures at a completely different hospital, on his day off, one day. He played it off cool... but he was there to specifically see and talk to me...
The generousity of these souls... their sheer care for the people who'd been thrust into their hands damaged and sick and their nurturing huamnity to bring us back to health... was just staggering.
That sort of care these 2 amazing souls had didn't just extend to me though. My first Haematologist told me his code one day in a candid moment. He treats "Every single person as if they're his father, brother, son, or uncle". And the way he treats them backs this up. He goes to every extent, doesn't care if he steps on toes or upsets people; he's renowned for giving tongue-lashings to clerical staff who wouldn't budge on red tape, and every time you're in serious trouble, you're glad to have him there because, if you needed it most, he'd ensure you got that CT scan, MRI or procedure done, no matter what others would say.
People call him eccentric, difficult to work with, rude even. But my Dad saw him immediately for what he really is. "The other day, before your first chemo, I came across him in the hallway and asked 'Doing anything this weekend, doctor?' attempting to make small talk. He just stared off into the distance and walked off the other way. And I wasn't offended at all."
"Why," I asked. I'd only just met him for the first time the other week, he'd only just told me those words that were going to change my life and I hadn't processed them for their real meaning yet. To me, he was an eccentric, off-putting doctor who had, in my own words, "No people skills."
"Because I know that the reason he did that was because he was busy thinking about a problem he had with another patient. And that patient in his mind may have well been you. With that in mind... Who do you want treating you?"
Claire, my opthalmologist, displays the same level of compassion and care for ALL of her patients too, I know, through this enlightening chat we had with another of her patients at during last visit. She was carrying a bunch of flowers, the same variety, I'm realising now, as the one's hanging on my noticeboard in this room, and my father made a remark on the arrangement.
"Yes, they are pretty aren't they?" the old lady smiled. "Claire got them for me, bless her. My son had died this month 20 years ago, and I mentioned that I was planning on visiting his grave to her during my last check-up last year. The dear soul remembered... Bless her." she sighed, wiping off a tear...
It's no wonder she always talks about being blessed and having the most adorable patients ever, "a veritable gang of second grandmas" as she puts it...
The humanity of that action... the sheer compassion and thought it showed... goddamnit...
THAT'S the kind of doctor I wanna be.
Hell... that's the kind of HUMAN I want to be!
Random acts of kindness have the power to change lives. I've said it many times before... but these guys transcend that and make every action as good as possible. It's bloody amazing, and I'm honoured to be affiliated with souls like this, and one day, aspire to be someone just like this.
I know it's hard to display this level of care and compassion everyday, for everyone during every circumstance too. But I know one thing as well... it's bloody worth it. And I'll definitely try to be as good a person, as well as a doctor, as I can be for everyone... forever.
But for you doctors, medical professionals; just ANYONE reading this, you don't have to feel the pain, or the worry of getting a cancer to understand this. You don't have to experience it first hand, as many doctors, such as these, end up doing before they themselves decide to write an inspiring article and change the way they practice. Hopefully reading this will make sure you don't have to do that one at the very least... You don't have to examine or read through textbooks and journal articles to find out how you should deal with your patients. All you've gotta do is Just Be Human. Just be nice... And if you can spread that humanity in a place, at a time at someone's life where there doesn't seem to be much going around - you WILL Change Lives. You WILL make a difference. And if you're ever struggling to find meaning in your life - be you a doctor or not - these acts will change YOUR life too.
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Here we go again... Cancer For a Third Time... When will it learn IT CAN'T MESS WITH ME!?!?
Last post: My Story: Next One
So... what's been going on you ask?
What's with that chemo drug you were talking about on Facebook? I thought you said it wasn't for cancer... and now you posted this?
Well, let me explain.
Recently I started a "chemotherapy" drug, but not for cancer.
It's called rituximab - and it's not only in brackets because it's technically, in my case, not a chemotherapy, as it's not "A chemical agent used in the treatment of cancers" (it was given for another condition I have - a side effect of my bone marrow transplant; chronic graft versus host disease. I'll explain it in detail in a later post) but because it's mechanism of action; the way it works is not in line with most chemotherapies.
Sure, it can have some of the nastier side effects of chemo - nausea, low immunity, diarrhoea; plus a few others (the reaction many, well, most patients have to it on the first dose can kill if a close eye isn't kept on it), but many people tolerate it pretty well beyond that.
Me included, so I thought after the first infusion. My reaction to it was mild - only a bit of cold/cough symptoms and a slight tightening of the chest. But over the next few days... the worst side effect came on.
The cramping.
Now I've had cramps for a while now; at least 1 and a half years. Ones that come on spontaneously that strike anywhere, anytime (though usually more severely at night), and fast, but they leave me in pain and anxiety for ages. They've were bad enough to affect my overall outlook on life and whether it was all worth it for a while (I talked about how I deal with that here - don't worry, I'm past that now) but since starting this medication... which is supposed to reduce them over time... they've gotten even worse.
The two days after my first dose, I cramped LITERALLY all day. In the arms, legs, shoulders, abs; everywhere. After the second dose, a week and a half ago now, I didn't stop cramping the entire week.
But there was another side effect of it that I also was starting to notice. Shortness of breath. And one night... that got even worse than the cramping. The day before what should have been my third dose of the drug, I got up and, within a few, cramp-filled steps, was gasping for breath.
We were on high alert. Any odd signs, even one as tiny as a new cough, was cause for immediate concern and, if outside hospital hours, a trip to emergency, we were warned. It was 7pm... I'd just won a game of poker. So off to emergency we went.
Once we were in there and seen we were given a range of possibilities of what it could be and what they were looking for. An infection of some kind was possible; but given my lack of a cough or fever or any other sign of it, unlikely. A pericardial effusion? Maybe because of this mildly abnormal ECG scan... A pulmonary embolism... a detached clot lodging itself in my lungs, though unlikely, had to be ruled out. Whatever it was, it was clear that we needed a scan more thorough than an X-Ray. So I was booked in for a CT.
So there I lay, back in my familiar bone marrow transplant ward, only 2 rooms down from where I'd received my life saving bone marrow donation, awaiting the results, when this new doctor burst in and told me this news.
"Well... we got your CT back... Though it's clear of any infections or PEs, there was a lesion found on the forth rib. The radiologists have said it has the features of a chondrosarcoma."
For a second, I sat there frozen, taking it all in. A few years of medical knowledge and intuition came into play... and the cogs in my brain started whirring... chondro - something to do with cartilage... the tense look on the residents and medical students' faces behind me meant something was up... sarcoma... a cancer... of the connective tissue.
Questions went racing through my mind, and before I knew it, firing off from my lips, as my confused parents looked to me and the registrar in charge.
"How do they know it's a chondrosarcoma?"
"Well... they don't definitively.. but there is some erosion in the bone, one that was there a few years ago, and it matches the features of it."
"Could it be something else? An infection of some kind eating away at the bone? Some bad scan? Is it just a hunch?"
"Well probably not the former. Infections don't look like that on scans. The latter... well... we're still not sure. We'll have to biopsy it to see."
And with only a non-committal bye, she left. Leaving my confused parents and I wondering what the fuck just happened.
When I told a friend... he just said "You can't catch a break, can you?" It certainly feels that way sometimes...
Still, it's weird though. I didn't have any pain, or sudden weight loss associated with this sorta thing. Not even when they poked at the site of it. My haematology (blood doctor) team and the orthopedists weren't convinced by the scans at first, so they were sent off for an MRI and a full body scan (to both get more details on that lesion and see if there are any others elsewhere.
And that bone scan confirmed the worst. There is osteoblast and other metabolic activity in that eroded bone. Meaning that it is some form of cancer. And the orthopaedists were saying... given my history of acute myeloid leukaemia... that it could be a myelosarcoma. The Acute myeloid leukaemia, my original, EXTREMELY agressive cancer, could've been back, this time in my bones...
My reaction to this? Exactly the same as here:
Yeah... I may have cancer again. But, just like when I first got it, just like when I relapsed, just as I've done in every challenge, when pursuing any goal, just as I've done ANYTHING in life... I took a step back, put it all into perspective and decided to focus on what I could control, on what could help me, rather than all the negative emotions, worries and thoughts; than all those things I couldn't. Because, as I always say, you'll always have a second way of looking at things. And you will ALWAYS be able to choose how you deal with any situation. No matter how hard it seems... Indeed, once you see that second, more positive, constructive path... taking it becomes the only LOGICAL thing to do.
I went out and looked at all the evidence of this being the worst case scenario... my original leukaemia coming back. There wasn't much in the way of evidence, bar a few isolated case reports of this happening in AML patients, and all of them had these bone manifestations at initial diagnosis, or relapse in cases where patients hadn't had bone marrow transplants; whose main purpose is to maintain a constant immune barrier to cancers coming back. And given the fact that there was a small sign of this lesion there a few years ago, and the aggressiveness of AML - the chances of it being that were tiny.
And luckily my haematologists agree. **Phew** In the off chance it is that though... I've still got heaps of options. Even if it's the worst worst case scenario... I've got one of my own. Over the last few months I've been looking seriously into cancer vaccine immunotherapies - thinking of a way of applying them to a wide range of cancers. There aren't many therapies that attack all cancers... my methodology may well do that - it uses your own tumour cells to prime your immune system to recognise and kill your cancer cells. Perfect - because unlike many personalised therapies, such as this one, this doesn't require huge imput and study of patients' own tumour profiles and the subsequent design of a drug or therapy for it. A version of it has even been used in my disease - AML - with decent succcess. And my methodology takes into account many of the shortcomings and recommendations of that one - and adds more from others. Plus there's another innovative component that'll get another pathway of the immune system involved; and all of this is cost and time efficient. My own idea may end up saving me...
But the more likely, less sinister case - that it's a chondrosarcoma, or some other, localised bone cancer I also looked into. And the good news about that - the 5 year survival rate for that is 90%. There may be post surgery radiation and chemo involved. Given my current situation, the graft versus host disease of the skin and other issues... it may be a bit more confusing, it may take longer than most patients. But hey! I'll pull through!
I guess you could call me unlucky... getting a really bad... agressive cancer, relapsing with it, getting a precursor to a different, just as aggressive cancer and now getting YET ANOTHER CANCER isn't exactly something you'd celebrate.
But when you take a step back and think about it from another perspective; I'm extremely lucky. Because if I hadn't been cautious, and come in when I started getting that shortness of breath, if I hadn't had that CT scan... we may never have found this til it was big enough to cause me pain, at which point... it could have spread elsewhere. where it's virtually untreatable.
Well... that's good and all. But that doesn't change the hard part... the treatment, though. I guess we don't really know the complete details of it yet. My orthopaedist, who specialises in bone tumours (in fact, he's happened to treat a few people I've met through this blog, as well as a good friend I know in real life - so I feel very safe in his hands!) is saying that we should just remove the segment of the rib and biopsy it later to find out exactly what it is. Why go in for 2 surgeries, and have the risk of causing swelling and facilitating spread of potential tumour cells when you're sure it is something that at the very least will progress to cancer, he argues. I guess he's the specialist here, and everyone else is, so I'm inclined to agree.
The surgery is on tomorrow. Or failing that Thursday. And it's gonna be painful as hell, I've been told. Not just the wound, which is gonna probably take longer to heal given my skin disease and steroid dosage, but the rib resection itself, which'll probably leave me in pain every time I breathe. The cramps I get, which are only getting worse really (another major concern of my haematologists and neurologists now) could make that even worse. Cause they happen in the chest and back - places he's planning to cut into. So that's gonna be... uncomfortable (a word doctors use to say pain when they don't want to say pain) to say the least...
There are some risks, my lung cavity could be pierced, there could be infections that come around with it.
But hey - I'm in great hands. And I'm choosing to see this, just as I have every other time, a minor inconvenience that'll lead to me being healthier and happier in the long run. As I've said before here... and as I spoke about here... fear can be paralyzing...
Thanks to everyone for those amazing messages and all the concern, and to all those friends in real life visiting too. Keep them going! Cause they'll keep me going over the next few weeks I'm sure! I'll keep you all updated but don't worry - in the meantime - I'll still be busy. I'll still keep working on those projects I've been hinting at. Cause hospital's boring. This may well get me working more efficiently than ever on it (IF I'm not high on morphine all the time that is =P ).
Thanks again everyone - and please don't worry. I'm in good hands. My doctors, my nurses, my parents, and my own. Share this, or this sentiment around, and I hope it helps others going through their own tough times too.
So... what's been going on you ask?
What's with that chemo drug you were talking about on Facebook? I thought you said it wasn't for cancer... and now you posted this?
Recently I started a "chemotherapy" drug, but not for cancer.
It's called rituximab - and it's not only in brackets because it's technically, in my case, not a chemotherapy, as it's not "A chemical agent used in the treatment of cancers" (it was given for another condition I have - a side effect of my bone marrow transplant; chronic graft versus host disease. I'll explain it in detail in a later post) but because it's mechanism of action; the way it works is not in line with most chemotherapies.
Sure, it can have some of the nastier side effects of chemo - nausea, low immunity, diarrhoea; plus a few others (the reaction many, well, most patients have to it on the first dose can kill if a close eye isn't kept on it), but many people tolerate it pretty well beyond that.
Me included, so I thought after the first infusion. My reaction to it was mild - only a bit of cold/cough symptoms and a slight tightening of the chest. But over the next few days... the worst side effect came on.
The cramping.
Now I've had cramps for a while now; at least 1 and a half years. Ones that come on spontaneously that strike anywhere, anytime (though usually more severely at night), and fast, but they leave me in pain and anxiety for ages. They've were bad enough to affect my overall outlook on life and whether it was all worth it for a while (I talked about how I deal with that here - don't worry, I'm past that now) but since starting this medication... which is supposed to reduce them over time... they've gotten even worse.
The two days after my first dose, I cramped LITERALLY all day. In the arms, legs, shoulders, abs; everywhere. After the second dose, a week and a half ago now, I didn't stop cramping the entire week.
But there was another side effect of it that I also was starting to notice. Shortness of breath. And one night... that got even worse than the cramping. The day before what should have been my third dose of the drug, I got up and, within a few, cramp-filled steps, was gasping for breath.
We were on high alert. Any odd signs, even one as tiny as a new cough, was cause for immediate concern and, if outside hospital hours, a trip to emergency, we were warned. It was 7pm... I'd just won a game of poker. So off to emergency we went.
Just another day in the office for the masked bandit...
Haha played 2 big tournaments in this mask to protect me from infections. It also gave me an extraordinary poker face.
Once we were in there and seen we were given a range of possibilities of what it could be and what they were looking for. An infection of some kind was possible; but given my lack of a cough or fever or any other sign of it, unlikely. A pericardial effusion? Maybe because of this mildly abnormal ECG scan... A pulmonary embolism... a detached clot lodging itself in my lungs, though unlikely, had to be ruled out. Whatever it was, it was clear that we needed a scan more thorough than an X-Ray. So I was booked in for a CT.
So there I lay, back in my familiar bone marrow transplant ward, only 2 rooms down from where I'd received my life saving bone marrow donation, awaiting the results, when this new doctor burst in and told me this news.
"Well... we got your CT back... Though it's clear of any infections or PEs, there was a lesion found on the forth rib. The radiologists have said it has the features of a chondrosarcoma."
For a second, I sat there frozen, taking it all in. A few years of medical knowledge and intuition came into play... and the cogs in my brain started whirring... chondro - something to do with cartilage... the tense look on the residents and medical students' faces behind me meant something was up... sarcoma... a cancer... of the connective tissue.
Questions went racing through my mind, and before I knew it, firing off from my lips, as my confused parents looked to me and the registrar in charge.
"How do they know it's a chondrosarcoma?"
"Well... they don't definitively.. but there is some erosion in the bone, one that was there a few years ago, and it matches the features of it."
"Could it be something else? An infection of some kind eating away at the bone? Some bad scan? Is it just a hunch?"
"Well probably not the former. Infections don't look like that on scans. The latter... well... we're still not sure. We'll have to biopsy it to see."
And with only a non-committal bye, she left. Leaving my confused parents and I wondering what the fuck just happened.
When I told a friend... he just said "You can't catch a break, can you?" It certainly feels that way sometimes...
Still, it's weird though. I didn't have any pain, or sudden weight loss associated with this sorta thing. Not even when they poked at the site of it. My haematology (blood doctor) team and the orthopedists weren't convinced by the scans at first, so they were sent off for an MRI and a full body scan (to both get more details on that lesion and see if there are any others elsewhere.
And that bone scan confirmed the worst. There is osteoblast and other metabolic activity in that eroded bone. Meaning that it is some form of cancer. And the orthopaedists were saying... given my history of acute myeloid leukaemia... that it could be a myelosarcoma. The Acute myeloid leukaemia, my original, EXTREMELY agressive cancer, could've been back, this time in my bones...
Yeah... I may have cancer again. But, just like when I first got it, just like when I relapsed, just as I've done in every challenge, when pursuing any goal, just as I've done ANYTHING in life... I took a step back, put it all into perspective and decided to focus on what I could control, on what could help me, rather than all the negative emotions, worries and thoughts; than all those things I couldn't. Because, as I always say, you'll always have a second way of looking at things. And you will ALWAYS be able to choose how you deal with any situation. No matter how hard it seems... Indeed, once you see that second, more positive, constructive path... taking it becomes the only LOGICAL thing to do.
I went out and looked at all the evidence of this being the worst case scenario... my original leukaemia coming back. There wasn't much in the way of evidence, bar a few isolated case reports of this happening in AML patients, and all of them had these bone manifestations at initial diagnosis, or relapse in cases where patients hadn't had bone marrow transplants; whose main purpose is to maintain a constant immune barrier to cancers coming back. And given the fact that there was a small sign of this lesion there a few years ago, and the aggressiveness of AML - the chances of it being that were tiny.
And luckily my haematologists agree. **Phew** In the off chance it is that though... I've still got heaps of options. Even if it's the worst worst case scenario... I've got one of my own. Over the last few months I've been looking seriously into cancer vaccine immunotherapies - thinking of a way of applying them to a wide range of cancers. There aren't many therapies that attack all cancers... my methodology may well do that - it uses your own tumour cells to prime your immune system to recognise and kill your cancer cells. Perfect - because unlike many personalised therapies, such as this one, this doesn't require huge imput and study of patients' own tumour profiles and the subsequent design of a drug or therapy for it. A version of it has even been used in my disease - AML - with decent succcess. And my methodology takes into account many of the shortcomings and recommendations of that one - and adds more from others. Plus there's another innovative component that'll get another pathway of the immune system involved; and all of this is cost and time efficient. My own idea may end up saving me...
But the more likely, less sinister case - that it's a chondrosarcoma, or some other, localised bone cancer I also looked into. And the good news about that - the 5 year survival rate for that is 90%. There may be post surgery radiation and chemo involved. Given my current situation, the graft versus host disease of the skin and other issues... it may be a bit more confusing, it may take longer than most patients. But hey! I'll pull through!
I guess you could call me unlucky... getting a really bad... agressive cancer, relapsing with it, getting a precursor to a different, just as aggressive cancer and now getting YET ANOTHER CANCER isn't exactly something you'd celebrate.
But when you take a step back and think about it from another perspective; I'm extremely lucky. Because if I hadn't been cautious, and come in when I started getting that shortness of breath, if I hadn't had that CT scan... we may never have found this til it was big enough to cause me pain, at which point... it could have spread elsewhere. where it's virtually untreatable.
You always have a second view of looking at things.
So why not choose the one that leaves you happiest?
Well... that's good and all. But that doesn't change the hard part... the treatment, though. I guess we don't really know the complete details of it yet. My orthopaedist, who specialises in bone tumours (in fact, he's happened to treat a few people I've met through this blog, as well as a good friend I know in real life - so I feel very safe in his hands!) is saying that we should just remove the segment of the rib and biopsy it later to find out exactly what it is. Why go in for 2 surgeries, and have the risk of causing swelling and facilitating spread of potential tumour cells when you're sure it is something that at the very least will progress to cancer, he argues. I guess he's the specialist here, and everyone else is, so I'm inclined to agree.
The surgery is on tomorrow. Or failing that Thursday. And it's gonna be painful as hell, I've been told. Not just the wound, which is gonna probably take longer to heal given my skin disease and steroid dosage, but the rib resection itself, which'll probably leave me in pain every time I breathe. The cramps I get, which are only getting worse really (another major concern of my haematologists and neurologists now) could make that even worse. Cause they happen in the chest and back - places he's planning to cut into. So that's gonna be... uncomfortable (a word doctors use to say pain when they don't want to say pain) to say the least...
There are some risks, my lung cavity could be pierced, there could be infections that come around with it.
But hey - I'm in great hands. And I'm choosing to see this, just as I have every other time, a minor inconvenience that'll lead to me being healthier and happier in the long run. As I've said before here... and as I spoke about here... fear can be paralyzing...
But it's not only normal to feel that way about things like these... and knowing of, and acknowledging it isn't scary... it's the best thing you could do for yourself. Because when the hard times come over the next few days of surgery and weeks of recovery... I'm not gonna crash down into despair... I'm gonna look at the big picture. What this is all for. And I'm gonna get through it. Like I always have!
Thanks to everyone for those amazing messages and all the concern, and to all those friends in real life visiting too. Keep them going! Cause they'll keep me going over the next few weeks I'm sure! I'll keep you all updated but don't worry - in the meantime - I'll still be busy. I'll still keep working on those projects I've been hinting at. Cause hospital's boring. This may well get me working more efficiently than ever on it (IF I'm not high on morphine all the time that is =P ).
Thanks again everyone - and please don't worry. I'm in good hands. My doctors, my nurses, my parents, and my own. Share this, or this sentiment around, and I hope it helps others going through their own tough times too.
Categories:
Cancer for a third time
chondrosarcoma
chronic graft versus host disease cramping
cramping
cramps
graft versus host disease
I'm not letting this get me again
myelosarcoma
rib lesion
rituximab
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