Great news! My ultrasound results came in & everything appears stable compared to my last one from April, so I can officially say that I am still cancer free! Yay!!! But booo, because now that means I’ll be officially laid off at the end of this month if I don’t find a job at my previous employer ( but that’s not likely to happen, since they’re closing or moving all the departments I would’ve been interested in applying for!), but at least I can FINALLY move on with the rest of my life & start looking for work elsewhere! I’d been wanting to wait till my first four-month surveillance before moving forward, just to err on the safe side! Wow, I feel like a huge weight has been removed from my shoulders! Now, I am well aware this is still very early days, and there’s always a very real possibility *it* could return, but for now, I can relax & move forward…well, once my physio is done in a month, that is. I’m on the home stretch now!!! :) Oh, and I definitely have ovarian cysts, but as mentioned in my post from yesterday, they’re totally unrelated to my myxoid liposarcoma & I’m not in any pain, so all is well. That’s it from me for now till probably next month when my out-patient physio finally ends! OMG, I am so giddy, I can’t wait!!! Placebo 2016 tour here I come!!! Thank you to everyone who's supported me over the past nine months! I couldn't have done it without you!
*[NOTE - Post title inspired by the song "Happy You're Gone" by Placebo off their 2009 album, "Battle for the Sun".]
Showing posts with label treatment plan. Show all posts
Showing posts with label treatment plan. Show all posts
Tuesday, 10 November 2015
Tuesday, 7 July 2015
Babble, Babble, Bitch, Bitch...Stupid Alien, Can't Wait Till You're Gone!!!
07/07/15 - Had my pre-surgery telephone consultation with a nurse this morning. She told me to bring copies of my personal directive & power of attorney docs to surgery on Friday. Wow, I know that's probably standard procedure with major cancer surgery like this, but that sure threw me for a loop! I've had major surgery several times & not once have I been asked to bring that kind of thing before. Mind you, it's been 10 years since my last major surgery, so perhaps that's something they do now with everyone...
And tomorrow I have to go across town to see the anesthesiologist, which I'm rather annoyed about, because I'd signed up for laughter yoga at Wellspring but I can't do both, so I have to cancel. I was really looking forward to it, too, as I've always wanted to try it since seeing it on the news a number of years ago. Oh well, hopefully, they'll have another session of it in the fall when I'll be well into my recovery.
*[NOTE: Post title inspired by lyrics from Marilyn Manson's song "This is the New Shit" off their 2003 album, "Golden Age of the Grotesque".]
Monday, 4 May 2015
Hang on to Your I.V. - Chemo & Radiation Starting Very Soon!
05/04/15 - After a month of waiting & several "tentative" start dates, I *finally* got CONFIRMATION of my chemo & radiation start dates beginning a week from today! Not sure excited is the right word - more like apprehension & fear of the side effects, but I feel relieved nonetheless to at last have some concrete dates, so that treatment can finally begin & I can move FORWARD in trying to beat the evil alien in my leg!
Everyone reacts to chemo & radiation differently, so I decided to post a bit of the info provided by my doctor's office ahead of time while I am still feeling relatively well. So, here goes...
My chemo will be administered by PICC (peripherally inserted central-venous catheter), which is a soft long catheter that's inserted into an arm vein while its tip rests in a large vein near the heart. A PICC can safely remain in your vein for days, weeks or even months, although I believe they're only leaving it in for the three days & nights of "chemo-light" I'll be having. Again, for those who're just tuning in to this blog, they're only doing a small dose of chemo in my case, in order to accustom my body for the upcoming radiation treatment. They say they get better results with less side effects, as fewer radiation treatments will be required doing it this way, in conjunction with doing the chemo & radiation prior to surgery. But getting back to the subject of PICCs...
Why is a PICC used? PICCs are used to administer:
- IV fluids
- medication
- blood products
- chemotherapy
- special nutrition
Once the PICC is inserted, they'll perform an x-ray to ensure the end near my heart is in the correct position. Only once that's complete will they start the chemo.
So, I'll have chemo overnight for three days in a row, then out-patient radiation begins the same day chemo ends for 10 days.
The hospital has some classes re: radiation therapy orientation I'm going to try to attend this week. I forgot to ask if there's also a chemo class. I'll be sure to report back on those should I attend either. Meanwhile, I'd been hoping to attend some local support programs re: meditation, drumming & just hanging out with other cancer patients, but the organization requires you to become a member first, which can NOT be done online, so stay tuned on that one! Crossing fingers I'll get my fax working that I haven't used in years! :p
*[NOTE: The title of this post was inspired by Placebo's song "Hang on to Your IQ" from their self-titled debut album.]
Everyone reacts to chemo & radiation differently, so I decided to post a bit of the info provided by my doctor's office ahead of time while I am still feeling relatively well. So, here goes...
My chemo will be administered by PICC (peripherally inserted central-venous catheter), which is a soft long catheter that's inserted into an arm vein while its tip rests in a large vein near the heart. A PICC can safely remain in your vein for days, weeks or even months, although I believe they're only leaving it in for the three days & nights of "chemo-light" I'll be having. Again, for those who're just tuning in to this blog, they're only doing a small dose of chemo in my case, in order to accustom my body for the upcoming radiation treatment. They say they get better results with less side effects, as fewer radiation treatments will be required doing it this way, in conjunction with doing the chemo & radiation prior to surgery. But getting back to the subject of PICCs...
Why is a PICC used? PICCs are used to administer:
- IV fluids
- medication
- blood products
- chemotherapy
- special nutrition
Once the PICC is inserted, they'll perform an x-ray to ensure the end near my heart is in the correct position. Only once that's complete will they start the chemo.
So, I'll have chemo overnight for three days in a row, then out-patient radiation begins the same day chemo ends for 10 days.
The hospital has some classes re: radiation therapy orientation I'm going to try to attend this week. I forgot to ask if there's also a chemo class. I'll be sure to report back on those should I attend either. Meanwhile, I'd been hoping to attend some local support programs re: meditation, drumming & just hanging out with other cancer patients, but the organization requires you to become a member first, which can NOT be done online, so stay tuned on that one! Crossing fingers I'll get my fax working that I haven't used in years! :p
*[NOTE: The title of this post was inspired by Placebo's song "Hang on to Your IQ" from their self-titled debut album.]
Tuesday, 28 April 2015
Pictures
04/27/15 - My radiation CT scan & planning (see lower right photo below) were completed in half the time anticipated, only took an hour! :) It was relatively painless, apart from the horribly hard medical table I had to lay on (Oh, my poor spine!). They had this beanbag mould thing filled with air that they used to build the mould that will keep me still during radiation treatment. Once they found a position that worked for them, they'd release the air & the mould would harden around my legs. If they needed to make an adjustment, they just filled it up with air again! So cool! Also, the giant digital photo frame on the ceiling showing blue sky & tree branches was a really nice touch. :) I want one! ;) In addition to this, they drew lines on my leg & placed tape in certain places, which will ensure they place my legs in exactly the same position during each radiation session. Still waiting for official confirmation of the chemo & radiation start dates. Tentatively, they commence next week, but I'll believe that when I see it, since one staff member today suggested it could be another two weeks before they start! Arrrggghhh!!! So frustrating! I feel like my leg is a ticking time bomb! I just want them to get this treatment started before Sir Alien decides to freakin' migrate somewhere else!
In addition to the radiation planning, the pics below show a lot of the past month, including pics of several of the tests. Speaking of which, one more test tomorrow - ultrasound on my ovary. Crossing every appendage possible it turns out to be nothing to worry about!
Last but not least, I have to give a huge THANK YOU to the CCS's Volunteer Driver program!!! My driver was wonderful! She even waited while I was at my appointment, so that we could get going as soon as I was done!
Sorry if this post is rather all over the place. I'm exhausted!
In addition to the radiation planning, the pics below show a lot of the past month, including pics of several of the tests. Speaking of which, one more test tomorrow - ultrasound on my ovary. Crossing every appendage possible it turns out to be nothing to worry about!
Last but not least, I have to give a huge THANK YOU to the CCS's Volunteer Driver program!!! My driver was wonderful! She even waited while I was at my appointment, so that we could get going as soon as I was done!
Sorry if this post is rather all over the place. I'm exhausted!
*[NOTE: The title of this post was inspired by the song "Pictures" written by Brian Molko.
Tuesday, 21 April 2015
A Million Little Pieces Come Together - Results Day #2.
04/20/15 - After much waiting & a week's delay, I finally got my consultation to discuss the results from all the many, many tests I've had over the past two months, especially those over the past two weeks. To my relief, the news was mostly good, though I'm not completely out of the woods yet. There was so much information covered today, there's no way I'll remember it all to share here. They estimated the consultation would take approximately two hours - we were at the hospital for nearly FIVE! That being said, here are some of the more important highlights. :)
First, I have a stage three 25x12x8cm tumour, which currently does not appear to have metastasized. [EDIT: I later learned speaking directly to my oncologist that the resident doctor screwed up, and I was actually stage 2B, GRADE 3, 25x13x8cm!] However, indeterminate spots WERE found in the bones of my abdomen & spine, plus another unusual spot was found on one of my ovaries. Now, before you panic - I sure did! - the abnormalities found in the bones of my abdomen & spine can also be found in people who do NOT have & have NEVER had cancer, BUT due to the fact that I do have cancer, they have to be vigilant. So, for now, my specialist is not overly concerned but will continually monitor them. As for the ovary, that's another story. Yep, here comes one more test (an ultrasound) to ensure it's nothing to worry bout. It's possible it could be related to surgery I had 10 years ago, so it may not be significant, but again, better safe than sorry. So, that'll be checked out prior to starting my treatment, which has been further delayed. Looks like it'll probably be another two weeks now. I'll also need to go in for a more in-depth radiation planning session, where they'll determine the best way to go about the radiation, such as position of my legs, etc.
So, to better cope with all the endless waiting, stress & yet more delays, I've decided to take advantage of the hospital's individual & group counselling services, in addition to the closely-matched peer support volunteer available through the Canadian Cancer Society. They also gave me info on courses patients can take through our local cancer centre. Haven't had a chance to look through them yet, but once I have, I'll share more info if they seem useful. Speaking of which, one very useful service they have on offer is a volunteer driver service to get patients to & from appointments. It's not only free but it's more flexible than the city's shared ride service for people with disabilities, as you don't have to worry about missing your ride home, should your appointment run longer than expected.
In addition to meeting with my orthopaedic oncologist again, I also met my radiologist for the first time, along with the respective resident-physicians for both specialists. Think of the residents as extensions of your primary medical team who fill in the gaps when your primary specialists have other patients to attend to, etc. It was here where I started to get more answers re: treatment & its short-term & long-term side effects. Now, keep in mind, everyone's different, and not everyone gets the same dose of chemo or radiation, but this is what they're expecting in my case...
Chemo therapy - Despite the low dose & short duration I'll he receiving, there's still an 80% chance I'll lose my hair but only on top of my head. It is rare for patients to lose ALL their hair (eyebrows, lashes, etc.), although it can happen occasionally. Despite being well aware hair loss was likely, the high percentage rate sure threw me for a loop! They also expect fatigue to be an issue, in addition to bruising more easily, risk of infection, nausea, change in appetite & taste.
Radiation - One of the most significant side effects will be skin soreness, irritation & peeling comparable to that of a sunburn.... My skin will also become darker in colour & become tighter. Other side effects are likely include fatigue & mouth sores. Due to the many changes to the skin, they recommend regularly using powder, such as baby powder, in addition to a medically prescribed cream. Fortunately, they don't anticipate blistering in my case. Here's hoping they're right! Given the large size of my tumour, feeling as if I have a sunburn on the posterior & side of my thigh will be more than enough to deal with, thank you very much!
Long-term side effects to keep in mind after treatment will be an increased risk of fracture years down the road due to the tumour removal occurring so close to my bone, as well as the possibility of secondary tumours due to the radiation. They said these secondary tumours occur in 25% of the individuals, and if cancer were to reoccur, it would most likely be in the same site as my original cancer. For the first two years once I'm cancer-free, I'll have to be checked every three months. Then for each of the five years thereafter, it'll be every six months. While this sounds like a lot, I'm being assured that my work's insurance company will be required to consider this all as part of my original claim, and thus I won't lose a bunch of sick days over all those appointments. :)
Recovery time will largely depend on how well my tumour responds to radiation & how the surgery goes. It could take anywhere from one to three months to recuperate from the surgery alone. It is up in the air how much physio therapy will be required, as this will be determined by how much surrounding tissue they'll end up removing. What I do know, is regardless of this, a large chunk will be removed from my leg, and it'll look as though someone took a bite out it. Fittingly, the in scission will be large. They are going to do everything they can to preserve the nerves & muscle surrounding the area but it's impossible to say that this point what the outcome will be. That being said, I did ask about my eventual ability to once again stand for long periods of time at, say...a general admission concert gig. Come on, Y'KNOW this question had to be forthcoming! ;) The resident physician said although the muscles in that leg will always be weaker, chances were promising, but of course, no guarantees. Only time will tell! Better start compiling my physio-workout music playlist now, haha! 2016 20th Anniversary Tour, here I come!!! Even if I have to waddle like a duck, I'll be there, someway, somehow!!! ;-)
*[NOTE: Post title inspired by Placebo's song "A Million Little Pieces" off their 2013 album, "Loud Like Love".]
First, I have a stage three 25x12x8cm tumour, which currently does not appear to have metastasized. [EDIT: I later learned speaking directly to my oncologist that the resident doctor screwed up, and I was actually stage 2B, GRADE 3, 25x13x8cm!] However, indeterminate spots WERE found in the bones of my abdomen & spine, plus another unusual spot was found on one of my ovaries. Now, before you panic - I sure did! - the abnormalities found in the bones of my abdomen & spine can also be found in people who do NOT have & have NEVER had cancer, BUT due to the fact that I do have cancer, they have to be vigilant. So, for now, my specialist is not overly concerned but will continually monitor them. As for the ovary, that's another story. Yep, here comes one more test (an ultrasound) to ensure it's nothing to worry bout. It's possible it could be related to surgery I had 10 years ago, so it may not be significant, but again, better safe than sorry. So, that'll be checked out prior to starting my treatment, which has been further delayed. Looks like it'll probably be another two weeks now. I'll also need to go in for a more in-depth radiation planning session, where they'll determine the best way to go about the radiation, such as position of my legs, etc.
So, to better cope with all the endless waiting, stress & yet more delays, I've decided to take advantage of the hospital's individual & group counselling services, in addition to the closely-matched peer support volunteer available through the Canadian Cancer Society. They also gave me info on courses patients can take through our local cancer centre. Haven't had a chance to look through them yet, but once I have, I'll share more info if they seem useful. Speaking of which, one very useful service they have on offer is a volunteer driver service to get patients to & from appointments. It's not only free but it's more flexible than the city's shared ride service for people with disabilities, as you don't have to worry about missing your ride home, should your appointment run longer than expected.
In addition to meeting with my orthopaedic oncologist again, I also met my radiologist for the first time, along with the respective resident-physicians for both specialists. Think of the residents as extensions of your primary medical team who fill in the gaps when your primary specialists have other patients to attend to, etc. It was here where I started to get more answers re: treatment & its short-term & long-term side effects. Now, keep in mind, everyone's different, and not everyone gets the same dose of chemo or radiation, but this is what they're expecting in my case...
Chemo therapy - Despite the low dose & short duration I'll he receiving, there's still an 80% chance I'll lose my hair but only on top of my head. It is rare for patients to lose ALL their hair (eyebrows, lashes, etc.), although it can happen occasionally. Despite being well aware hair loss was likely, the high percentage rate sure threw me for a loop! They also expect fatigue to be an issue, in addition to bruising more easily, risk of infection, nausea, change in appetite & taste.
Radiation - One of the most significant side effects will be skin soreness, irritation & peeling comparable to that of a sunburn.... My skin will also become darker in colour & become tighter. Other side effects are likely include fatigue & mouth sores. Due to the many changes to the skin, they recommend regularly using powder, such as baby powder, in addition to a medically prescribed cream. Fortunately, they don't anticipate blistering in my case. Here's hoping they're right! Given the large size of my tumour, feeling as if I have a sunburn on the posterior & side of my thigh will be more than enough to deal with, thank you very much!
Long-term side effects to keep in mind after treatment will be an increased risk of fracture years down the road due to the tumour removal occurring so close to my bone, as well as the possibility of secondary tumours due to the radiation. They said these secondary tumours occur in 25% of the individuals, and if cancer were to reoccur, it would most likely be in the same site as my original cancer. For the first two years once I'm cancer-free, I'll have to be checked every three months. Then for each of the five years thereafter, it'll be every six months. While this sounds like a lot, I'm being assured that my work's insurance company will be required to consider this all as part of my original claim, and thus I won't lose a bunch of sick days over all those appointments. :)
Recovery time will largely depend on how well my tumour responds to radiation & how the surgery goes. It could take anywhere from one to three months to recuperate from the surgery alone. It is up in the air how much physio therapy will be required, as this will be determined by how much surrounding tissue they'll end up removing. What I do know, is regardless of this, a large chunk will be removed from my leg, and it'll look as though someone took a bite out it. Fittingly, the in scission will be large. They are going to do everything they can to preserve the nerves & muscle surrounding the area but it's impossible to say that this point what the outcome will be. That being said, I did ask about my eventual ability to once again stand for long periods of time at, say...a general admission concert gig. Come on, Y'KNOW this question had to be forthcoming! ;) The resident physician said although the muscles in that leg will always be weaker, chances were promising, but of course, no guarantees. Only time will tell! Better start compiling my physio-workout music playlist now, haha! 2016 20th Anniversary Tour, here I come!!! Even if I have to waddle like a duck, I'll be there, someway, somehow!!! ;-)
*[NOTE: Post title inspired by Placebo's song "A Million Little Pieces" off their 2013 album, "Loud Like Love".]
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