"It must be so frustrating that you've gone through four months of all these drugs, including six weeks of steroids that have wrecked up your system - all for nothing. The pericarditis is still there."
All for nothing. I feel like I've been run over by a bus most days (and look like it too), all for nothing. I've tried to remain optimistic throughout this process but when someone very close to me pointed out that we're no further ahead four months later (I don't think it's unfair to say that I'm even a few steps further back) it was like a final puzzle piece falling into place. It had to be said, and I hadn't been able to say it to myself yet.
Sure, I've gone through the weekly disappointment when my doc puts his stethoscope to my chest and again hears the squeaking and rubbing. Intellectually I understand that my treatments have been unsuccessful and in fact are in the long term potentially doing more harm than good. It's a series of gambles when dealing with a rare illness, there's just not enough information out there to be able to follow a proven regimen. All of us dealing with this illness have to make the best decision we can given what our doctors can tell us, what we've researched on our own and often listening to what our instinct tells us to do.
Hearing "all for nothing" has caused me to think even harder about upcoming treatment options. I mentioned in my last post that I'm supposed to start a chemo drug next week. I still don't know if I'll do it. My body feels beaten up and I feel that I need a rest from all these meds (and I'm stuck with the steroids for at least another few months as it has to be tapered safely). We're still trying to address one symptom of my illness (pericarditis) and haven't even yet begun to treat my illness as a whole.
Do I have the luxury of giving myself a rest? Am I weak if I say I need to raise the white flag for awhile? Friends and family who know me might say that this doesn't sound like me at all, they know a fighter who always can raise a smile. Right now I don't even recognize the person I see in the mirror after the effects of steroids, truth be told I don't recognize the person inside of me at times either right now. I so desperately need a shred of good news to help boost me along on this journey.
For now, I'm going to step into a long, hot shower. Cleans my body and my brain, and I'll be ready to face another day. And I will smile because despite "all for nothing" I still have much to be grateful for.
Friday, July 31, 2009
Monday, July 27, 2009
Stepping Over the Edge
Last week I was able to meet with a cardiologist who specializes in pericarditis. She's written on the subject for textbooks, medical journals etc., and from what I'm told she knows pericarditis better than anyone in this country, I'm lucky to have such expertise on my side.
However, it was a bitter pill to swallow (no pun intended , but prednisone does taste AWFUL!) when she told me that five weeks on steroids haven't worked, and not likely to do so if they haven't improved things by now. Saturday I started on what's called a prednisone taper, you have to go down very slowly to allow your adrenal glands to start producing the hormone cortisol on their own again. This process will take months, best estimate if all goes well it'll be November before I can stop taking them.
I was very surprised that even a small drop from 40mg to 35 mg affected me so greatly. It's been a rough few days. I tried a trip to the grocery store yesterday, and after only picking up half a dozen items I was ready to sit down in the middle of the aisle and beg some strapping young lad to carry me through checkout (I still needed those items!) and to my car. The tumour in my leg is throbbing, and the pericarditis is making sure I don't forget that it's there. I'm anxious that this might herald what the next few months might be like. I've heard that the taper can be worse than the steroid side effects, I'll just have to take this day by day.
This isn't the hardest part for me to digest. My team of doctors agree that it's time to treat my overall illness rather than the pericarditis on its own; out come the big guns. Next week I go back to the hospital to get my prescription for a chemotherapy drug called Methotrexate. I'm struggling with this a great deal. I get that a great many people have been treated successfully with chemo for cancers, but I had decided early on that I wouldn't put myself through chemo for an incurable illness. Methotrexate from what I've read isn't as hard on the system as many other chemo drugs, but still kills cells and can be unpleasant.
The reality is that in order for our government to fund the interferon (about 30K a year) that has seemed to benefit others with the same illness around the world, I have to try some more commonly used (and far less expensive) options before they'll consider my application.
I'm not entirely sure yet whether I'll agree to take this new drug. I have a lot of questions to ask at my next appointment, maybe my docs will convince me - maybe they won't.
I value that my team of doctors do their best to educate me on my options, but they've said all along that decisions remain with me. From the very first visit I was told that their mandate is to research options to slow down the progression of my illness, but above all make sure that I'm as comfortable as possible.
Just how comfortable do I want to be?
However, it was a bitter pill to swallow (no pun intended , but prednisone does taste AWFUL!) when she told me that five weeks on steroids haven't worked, and not likely to do so if they haven't improved things by now. Saturday I started on what's called a prednisone taper, you have to go down very slowly to allow your adrenal glands to start producing the hormone cortisol on their own again. This process will take months, best estimate if all goes well it'll be November before I can stop taking them.
I was very surprised that even a small drop from 40mg to 35 mg affected me so greatly. It's been a rough few days. I tried a trip to the grocery store yesterday, and after only picking up half a dozen items I was ready to sit down in the middle of the aisle and beg some strapping young lad to carry me through checkout (I still needed those items!) and to my car. The tumour in my leg is throbbing, and the pericarditis is making sure I don't forget that it's there. I'm anxious that this might herald what the next few months might be like. I've heard that the taper can be worse than the steroid side effects, I'll just have to take this day by day.
This isn't the hardest part for me to digest. My team of doctors agree that it's time to treat my overall illness rather than the pericarditis on its own; out come the big guns. Next week I go back to the hospital to get my prescription for a chemotherapy drug called Methotrexate. I'm struggling with this a great deal. I get that a great many people have been treated successfully with chemo for cancers, but I had decided early on that I wouldn't put myself through chemo for an incurable illness. Methotrexate from what I've read isn't as hard on the system as many other chemo drugs, but still kills cells and can be unpleasant.
The reality is that in order for our government to fund the interferon (about 30K a year) that has seemed to benefit others with the same illness around the world, I have to try some more commonly used (and far less expensive) options before they'll consider my application.
I'm not entirely sure yet whether I'll agree to take this new drug. I have a lot of questions to ask at my next appointment, maybe my docs will convince me - maybe they won't.
I value that my team of doctors do their best to educate me on my options, but they've said all along that decisions remain with me. From the very first visit I was told that their mandate is to research options to slow down the progression of my illness, but above all make sure that I'm as comfortable as possible.
Just how comfortable do I want to be?
Thursday, July 23, 2009
I apologize in advance...
Bad, nasty stuff happen to all of us. I figure I got a little more than my share in this lifetime; I've been thinking that there might be a bit of a bonus for me somewhere for putting on a brave face through all of this, not terribly unreasonable - right?
So I have it in my head that as a reward for dealing with all of this I miraculously have been bestowed with the great singing voice I've always wanted.
When I'm alone at home I've been belting out tunes, singing along with my eclectic collection of CDs with delusions that should a record producer get lost in my neighbourhood and overhear me as he/she knocks on my door for directions that I will surely land a multimillion dollar record deal. Hrrmmpphh. I did mention delusions, didn't I?
I'm afraid that I've now opened the door to causing others great discomfort. After a bit of a rough week I treated myself yesterday to my very first MP3 player (an iTouch in fact, I love it!) but I've realized that I have a hard time listening to it without singing along.
So should you come across a mid 40's woman who's making a complete fool of herself in public (you'll know it's me 'cause of the camera around my neck), not realizing that she's actually making sounds audible to others - forgive me! I'm really trying hard to keep the music inside my head. I am fully aware that I won't be mistaken for Norah Jones, but I do love this escape!
Did I mention that I love to dance too when I listen to music? There will be no mistaking who it is when you find me. Really, I'm sorry for subjecting you to this spectacle. :-)
So I have it in my head that as a reward for dealing with all of this I miraculously have been bestowed with the great singing voice I've always wanted.
When I'm alone at home I've been belting out tunes, singing along with my eclectic collection of CDs with delusions that should a record producer get lost in my neighbourhood and overhear me as he/she knocks on my door for directions that I will surely land a multimillion dollar record deal. Hrrmmpphh. I did mention delusions, didn't I?
I'm afraid that I've now opened the door to causing others great discomfort. After a bit of a rough week I treated myself yesterday to my very first MP3 player (an iTouch in fact, I love it!) but I've realized that I have a hard time listening to it without singing along.
So should you come across a mid 40's woman who's making a complete fool of herself in public (you'll know it's me 'cause of the camera around my neck), not realizing that she's actually making sounds audible to others - forgive me! I'm really trying hard to keep the music inside my head. I am fully aware that I won't be mistaken for Norah Jones, but I do love this escape!
Did I mention that I love to dance too when I listen to music? There will be no mistaking who it is when you find me. Really, I'm sorry for subjecting you to this spectacle. :-)
Monday, July 20, 2009
After not working for almost five months (because of my leg surgery and subsequent recovery time) I was gnawing at the bit to get back to photographing. I didn't expect to be further delayed by that (yes, still very present) case of pericarditis that has required copious amounts of prescription drugs, the side effects of which have further delayed my return to a full work schedule.
I'm beyond pleased these days when I'm feeling well enough to shoot a portrait session, but the reality is that I have to take this very slowly. Thank goodness I have some very understanding clients! I had a fantastic session this past Sunday and felt on top of my game, and the photos came out really well. I pay for it by being quite tired for a few days afterwards. Totally worth it though for the few hours of bliss!
I'm hard on myself about this light work schedule. I love productive work days, they give me great satisfaction. When I was well I was always working on something photographic. Shooting, retouching, preparing images for the galleries that represent my work, self-publishing a book, and always learning. If I was on my computer, 95% of the time it had something to do with photography!
A few weeks ago a good friend to our family called to check in on how we were doing. At the time I was having a rough day, and this sage friend told me that he did understand how much I must miss working, but dealing with my illness was now my job.
At the time I agreed in theory, but it's taken a few weeks for this to sink in. I'm starting to understand that my job now is to take the best possible care of myself that I can; to consult with my doctors, research my illness, and follow through with my treatments. And given how driven I can be with whatever I set my mind to, my current objective is to be the best patient I can be - with the goal of achieving the best possible outcome for this illness. Hopefully photographing will be a bigger part of my life again soon, I miss it more than I can explain in words.
The first photo was taken after a hospital visit last week. I was so exhausted from my trip into the city, yet I felt I had to walk about with my camera for a bit and came across this artwork on the wall of a church under restoration. The second photo was taken in a downtown office building, the reflections are what caught my eye. Both images uplift me for different reasons, I'm trying very hard to keep looking up! :-)
Tuesday, July 14, 2009
A Question of Health
Somehow I've found myself as a frequent recipient of on-line survey requests. Reputable survey companies send me questionnaires, I fill them in and in turn I often get bonuses as a thank you for my time. Significant discount coupons towards products I already buy, or even cash bonuses once in awhile. Given the amount of time that I spent in bed earlier this year not a bad return for maybe 20 or 30 minutes of my time every week.
The surveys keep coming but I find that I'm completing fewer of them, I just have better things to do with my time now that I'm mobile again! One survey caught my attention a few days ago, the subject was Emergency Health Care. Interesting enough and I was happy to add my two cents hoping that my responses might end up in the hands of government agencies that might be in a situation to improve my country's emergency care (which I've unfortunately experienced first hand to be lacking in many respects).
These surveys usually end with a few questions about my personal demographics. Age, marital status etc., but this last survey also asked about my current state of health.
Excellent
Very Good
Good
Fair
Poor
I answered, and was already a bit further along in the survey before it hit me that I had answered "Good". If you've been reading this blog, you'll know that "Good" isn't exactly how one would describe my state of health!
I love it when I have forgotten what I'm dealing with. Blessedly it happens often, but I had to laugh at how I answered that particular survey question. I'm grateful for the mental holidays I'm able to take from my illness, short or long - I'll take 'em.
To those kind friends who email us with messages of support and requests for updates - my hospital visit on Monday confirmed what I suspected, the pericarditis is still going strong. Higher doses of the same meds this week, I seem to be tolerating them fairly well though (except for the steroid "moonface", I'm afraid my vanity is kicking in a bit and I'm not crazy about going out in public these days). But... I finally had a decent night of sleep (thanks to a little white pill that my doctor insisted I take so I'd get more than 3 hours sleep - it was bliss!)
The surveys keep coming but I find that I'm completing fewer of them, I just have better things to do with my time now that I'm mobile again! One survey caught my attention a few days ago, the subject was Emergency Health Care. Interesting enough and I was happy to add my two cents hoping that my responses might end up in the hands of government agencies that might be in a situation to improve my country's emergency care (which I've unfortunately experienced first hand to be lacking in many respects).
These surveys usually end with a few questions about my personal demographics. Age, marital status etc., but this last survey also asked about my current state of health.
Excellent
Very Good
Good
Fair
Poor
I answered, and was already a bit further along in the survey before it hit me that I had answered "Good". If you've been reading this blog, you'll know that "Good" isn't exactly how one would describe my state of health!
I love it when I have forgotten what I'm dealing with. Blessedly it happens often, but I had to laugh at how I answered that particular survey question. I'm grateful for the mental holidays I'm able to take from my illness, short or long - I'll take 'em.
To those kind friends who email us with messages of support and requests for updates - my hospital visit on Monday confirmed what I suspected, the pericarditis is still going strong. Higher doses of the same meds this week, I seem to be tolerating them fairly well though (except for the steroid "moonface", I'm afraid my vanity is kicking in a bit and I'm not crazy about going out in public these days). But... I finally had a decent night of sleep (thanks to a little white pill that my doctor insisted I take so I'd get more than 3 hours sleep - it was bliss!)
Saturday, July 11, 2009
Conquering Fear
When I speak with good friends about the prognosis of my illness, I'm always quick to point out that I'm not afraid to die. Hoping of course that this outcome is a long way off, but the truth of the matter is that this illness has manifested itself in my heart - and I kinda need that part to keep going!
I'm not sure how I arrived at this lack of fear of my life ending, and we could probably speak at length about why someone would or wouldn't be afraid. Maybe the nurturing part of me needs my loved ones to know that I'm not fearful, that it will help them in dealing with this. Maybe I am truly as content with my life as I think I am. Spirituality can play a big part in this sense of peace, that's a post for another day.
You may come to realize reading this blog how important my photography is to me (there's a connection here, bear with me). I immerse myself in learning every day, and one of my favourite resources is Lenswork magazine. Every two months I anxiously await delivery of the Extended version on DVD, and spend hours looking at the beautiful images, and listen to interviews with the photographers.
One favourite feature is publisher Brooks Jensen's podcasts, and in the most recent issue he included one called "Managing Fear". Before I share the link (these podcasts are available for free on the Lenswork website), I'll add that the photographer that you'll hear is Camille Seaman (her images are absolutely stunning, check out her Iceberg portfolios, link is below).
This podcast felt particularly poignant today for me. I may not be afraid of dying, but there are still a few things in my life that I want to no longer fear. Maybe her point will strike a chord with you too.
"Managing Fear" podcast: http://www.lenswork.com/podcast/LW0510%20-%20Managing%20Fear.mp3 (it's only a couple of minutes long)
Camille Seaman's website: http://www.camilleseaman.com
Lenswork Magazine: http://www.lenswork.com/
And just maybe one day you might see my images in Lenswork. That short bucket list of mine does include making a submission of my own!
I'm not sure how I arrived at this lack of fear of my life ending, and we could probably speak at length about why someone would or wouldn't be afraid. Maybe the nurturing part of me needs my loved ones to know that I'm not fearful, that it will help them in dealing with this. Maybe I am truly as content with my life as I think I am. Spirituality can play a big part in this sense of peace, that's a post for another day.
You may come to realize reading this blog how important my photography is to me (there's a connection here, bear with me). I immerse myself in learning every day, and one of my favourite resources is Lenswork magazine. Every two months I anxiously await delivery of the Extended version on DVD, and spend hours looking at the beautiful images, and listen to interviews with the photographers.
One favourite feature is publisher Brooks Jensen's podcasts, and in the most recent issue he included one called "Managing Fear". Before I share the link (these podcasts are available for free on the Lenswork website), I'll add that the photographer that you'll hear is Camille Seaman (her images are absolutely stunning, check out her Iceberg portfolios, link is below).
This podcast felt particularly poignant today for me. I may not be afraid of dying, but there are still a few things in my life that I want to no longer fear. Maybe her point will strike a chord with you too.
"Managing Fear" podcast: http://www.lenswork.com/podcast/LW0510%20-%20Managing%20Fear.mp3 (it's only a couple of minutes long)
Camille Seaman's website: http://www.camilleseaman.com
Lenswork Magazine: http://www.lenswork.com/
And just maybe one day you might see my images in Lenswork. That short bucket list of mine does include making a submission of my own!
Friday, July 10, 2009
Erasing the evidence
I'm here in bed with my laptop, catching up on this and that as I rest. I look around and today I just don't like what I see.
Across from the bed is a cabinet, and on top you'd see rows of pill bottles, a pill organizer, a pill splitter, blood pressure cuff, vitamins, and notes written at my doctor & hospital visits. Very organized and neat (this is still me after all!) but today it makes me cringe.
Since early this year this has been the room where I've spent a great deal of time recovering from surgery, dealing with the physical limitations that my illness places upon me (and those from the side effects of all these #$#$ drugs!) This week was especially tough and often it felt like even the short walk across the room was too far to go for the next dose of pills.
Enough. Really. I'm reclaiming this bedroom as a sanctuary.
Yes, I do need to spend more time here than I would like - but it has to become a more peaceful place for me. All this medical stuff is going into the cabinet, rather than on top in full view.
There's no chance at all that hiding them away will cause me to forget to take my meds. The simple act of waking up each morning sets off the meds schedule of "take upon waking" , "take one hour before first meal", "take with breakfast" etc. - you get it, I live by the clock and my meal schedule these days.
I'm feeling quite a bit better today than I have in days. So while I have the energy, I'm getting up to put all these reminders of my illness into hiding. I just don't need the evidence staring me in the face!
Across from the bed is a cabinet, and on top you'd see rows of pill bottles, a pill organizer, a pill splitter, blood pressure cuff, vitamins, and notes written at my doctor & hospital visits. Very organized and neat (this is still me after all!) but today it makes me cringe.
Since early this year this has been the room where I've spent a great deal of time recovering from surgery, dealing with the physical limitations that my illness places upon me (and those from the side effects of all these #$#$ drugs!) This week was especially tough and often it felt like even the short walk across the room was too far to go for the next dose of pills.
Enough. Really. I'm reclaiming this bedroom as a sanctuary.
Yes, I do need to spend more time here than I would like - but it has to become a more peaceful place for me. All this medical stuff is going into the cabinet, rather than on top in full view.
There's no chance at all that hiding them away will cause me to forget to take my meds. The simple act of waking up each morning sets off the meds schedule of "take upon waking" , "take one hour before first meal", "take with breakfast" etc. - you get it, I live by the clock and my meal schedule these days.
I'm feeling quite a bit better today than I have in days. So while I have the energy, I'm getting up to put all these reminders of my illness into hiding. I just don't need the evidence staring me in the face!
Tuesday, July 7, 2009
A few photos from a lovely afternoon
Yesterday I had my weekly checkup at the hospital, unfortunately the pericarditis is still there, it hasn't improved and that means more drugs again (eight different ones now - some to treat the inflammation, others to treat the side effects of those first drugs).
This is overwhelming for me; I pride myself on trying natural approaches to medical issues and prefer to tough it out rather than take even so much as a Tylenol. I feel like a walking chemical soup these days!
I'll admit to being a bit down after my appointment, my doctor had been hopeful that almost three weeks of steroids would have knocked my heart back to healthier state. He isn't crazy about giving me all these meds either but after conferring with several cardiologists we don't seem to have another option right now if we're to clear out the pericarditis in preparation for the "heavy hitter drugs" to treat my overall systemic illness.
What better way to cheer myself up than to go for a long walk through the city in which I used to live (my hospital appts are a one hour train/car ride from where I live now) with my camera! It was a spectacular afternoon, perfect strolling weather. Here are a few shots from my afternoon, it was easy to forget all about my illness, meds and pain for a few hours.
Today, I'm in bed. One of my new drugs can cause bone pain, and did I ever get hit hard with it today. Tomorrow will be better, I can feel it...
Saturday, July 4, 2009
Is a picture worth a thousand words?
Over the last months I've had to spend lots of time resting. Not really what I'm good at to be honest, I'm much happier getting things done, usually multi-tasking. My husband has said that I seem to thrive on organized chaos and he's not far off base.
It's almost impossible for me to just lie there resting, as I had to for almost three months straight following my bone surgery in February. I'm very glad that I once again invested in a laptop when it was time to replace my computer last year, it was a godsend to be able to continue communicating with family, friends and clients.
I got hooked on listening to photography related podcasts, there are several I can recommend if you're interested in this sort of thing. This evening as I was resting (those steroids are taking their toll and I had to slow down a bit today) I caught up on a recent episode of "The Candid Frame"; this one an interview with photographer Douglas Kirkland (links at the bottom of this post).
Mr. Kirkland has had a rich and fascinating career, and there was one part of the interview that particularly caught my attention this evening. He was speaking to his process of getting to know his subject so that he could accurately portray them when he captured their image.
Now, as a portrait photographer myself I pride myself on getting to know my client with the same intention. Asking lots of questions before the session, trying to get a feel for how they would prefer to be portrayed.
As I listened to this interview it struck me that in my quest to have another photographer take our family photo (always having camera in hand I'm rarely on the other end of the lens) I need to think about this issue. And I'm thrown. How do I want to be remembered when my family looks at these photos after I'm no longer here? How had I not thought about this before now?
The vain part of me want to hold off until after steroid treatment (those steroid-induced chipmunk cheeks are taking over my face, despite my husband telling me that they're pinchably cute I don't want to be photographed right now), but it's not just about what I'll look like. What will my family & loved ones see in my eyes in these photos?
It's not like I've forgotten that this illness doesn't come with a happy ending. I know that unless a wayward bus and a moment of inattention catch me sooner, this illness will take my life.
Today for the very first time I thought about how people I know might have some judgement to pass about me after I'm gone. Will they say I was a loving person? Will they think that I did my best at whatever I attempted? Wishful thinking on my part. Certainly not all thoughts will be positive, I'm well aware of my numerous faults and quirks and I'm not done yet trying to be a better person in this lifetime.
How do I ask a photographer to catch the truth of who I am when I'm not sure of the answer to that myself yet?
http://www.douglaskirkland.com/
http://thecandidframe.blogspot.com/
It's almost impossible for me to just lie there resting, as I had to for almost three months straight following my bone surgery in February. I'm very glad that I once again invested in a laptop when it was time to replace my computer last year, it was a godsend to be able to continue communicating with family, friends and clients.
I got hooked on listening to photography related podcasts, there are several I can recommend if you're interested in this sort of thing. This evening as I was resting (those steroids are taking their toll and I had to slow down a bit today) I caught up on a recent episode of "The Candid Frame"; this one an interview with photographer Douglas Kirkland (links at the bottom of this post).
Mr. Kirkland has had a rich and fascinating career, and there was one part of the interview that particularly caught my attention this evening. He was speaking to his process of getting to know his subject so that he could accurately portray them when he captured their image.
Now, as a portrait photographer myself I pride myself on getting to know my client with the same intention. Asking lots of questions before the session, trying to get a feel for how they would prefer to be portrayed.
As I listened to this interview it struck me that in my quest to have another photographer take our family photo (always having camera in hand I'm rarely on the other end of the lens) I need to think about this issue. And I'm thrown. How do I want to be remembered when my family looks at these photos after I'm no longer here? How had I not thought about this before now?
The vain part of me want to hold off until after steroid treatment (those steroid-induced chipmunk cheeks are taking over my face, despite my husband telling me that they're pinchably cute I don't want to be photographed right now), but it's not just about what I'll look like. What will my family & loved ones see in my eyes in these photos?
It's not like I've forgotten that this illness doesn't come with a happy ending. I know that unless a wayward bus and a moment of inattention catch me sooner, this illness will take my life.
Today for the very first time I thought about how people I know might have some judgement to pass about me after I'm gone. Will they say I was a loving person? Will they think that I did my best at whatever I attempted? Wishful thinking on my part. Certainly not all thoughts will be positive, I'm well aware of my numerous faults and quirks and I'm not done yet trying to be a better person in this lifetime.
How do I ask a photographer to catch the truth of who I am when I'm not sure of the answer to that myself yet?
http://www.douglaskirkland.com/
http://thecandidframe.blogspot.com/
Wednesday, July 1, 2009
Those aren't acorns in my cheeks!
The good, the bad and the (not yet) ugly....
I've been on steroids now for two weeks. Everyone's experience will be different, but I must say this has been an interesting road.
My skin is smoother and clearer than I ever remember....but I'm also bruising more easily.
I have unbounded energy and strength on most days, but next to no sleep! I'm lucky if I'm getting four hours a night. Getting lots done though (and working a bit too thankfully).
I'm not gaining weight overall, but it's a little disconcerting to see my face expanding every day! My dear husband and daughter tell me they see little difference, but it's okay to tell me that you do.
Most days I have a great sense of elation, but I've had two days of the nasties. Family was warned, and I went into seclusion. Tears were cried, vengeance wreaked upon the vacuum cleaner hose. Don't ask (but the vacuum cleaner and I both survived the altercation).
I can finally breathe easily without any chest pain most days! The drugs are working.... my heart races a bit throughout the day (but that of course is from seeing my husband come round the corner) :-)
I had almost two weeks of not feeling any leg pain from the bone tumour, pretty wonderful - I haven't bounced around like this in a long time. Overall muscle and bone pain kicking in now, I understand this is normal at this point in the treatment. Not nearly bad enough to keep me down.
I'm not as hungry as I was the first week on treatment, I think I've learned just to ignore it for the most part. Although I did get into a box of crackers at 1 a.m. this morning, the first time I've given in to the hunger during the night.
More hair seems to coming out in my hands when I shampoo. Thankfully not in any patches, it's just thinning out a bit.
We're keeping our fingers crossed that my doc hears no evidence of pericarditis at my appointment on Monday. If it's still there, the dosage goes up (eek!). If not, we start the weaning process (you can't just quit prednisone, normal adrenal function of the body has been altered and it needs time to produce its own cortisol again).
The thought of a full eight hours of sleep has me drooling far more than the hunger that comes with this treatment!
I've been on steroids now for two weeks. Everyone's experience will be different, but I must say this has been an interesting road.
My skin is smoother and clearer than I ever remember....but I'm also bruising more easily.
I have unbounded energy and strength on most days, but next to no sleep! I'm lucky if I'm getting four hours a night. Getting lots done though (and working a bit too thankfully).
I'm not gaining weight overall, but it's a little disconcerting to see my face expanding every day! My dear husband and daughter tell me they see little difference, but it's okay to tell me that you do.
Most days I have a great sense of elation, but I've had two days of the nasties. Family was warned, and I went into seclusion. Tears were cried, vengeance wreaked upon the vacuum cleaner hose. Don't ask (but the vacuum cleaner and I both survived the altercation).
I can finally breathe easily without any chest pain most days! The drugs are working.... my heart races a bit throughout the day (but that of course is from seeing my husband come round the corner) :-)
I had almost two weeks of not feeling any leg pain from the bone tumour, pretty wonderful - I haven't bounced around like this in a long time. Overall muscle and bone pain kicking in now, I understand this is normal at this point in the treatment. Not nearly bad enough to keep me down.
I'm not as hungry as I was the first week on treatment, I think I've learned just to ignore it for the most part. Although I did get into a box of crackers at 1 a.m. this morning, the first time I've given in to the hunger during the night.
More hair seems to coming out in my hands when I shampoo. Thankfully not in any patches, it's just thinning out a bit.
We're keeping our fingers crossed that my doc hears no evidence of pericarditis at my appointment on Monday. If it's still there, the dosage goes up (eek!). If not, we start the weaning process (you can't just quit prednisone, normal adrenal function of the body has been altered and it needs time to produce its own cortisol again).
The thought of a full eight hours of sleep has me drooling far more than the hunger that comes with this treatment!
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