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!
*[NOTE: The title of this post was inspired by the song "Pictures" written by Brian Molko.
04/25/15 - So, I decided to take advantage of the FREE counselling service available to cancer patients in my province. Ideally, I'd hoped for group counselling to further share experiences with others who've gone through this same journey. But, of course, as my tattoo declares, I am "one of a kind" or at least one of very few. Myxoid liposarcomas are so rare there are no in-person support groups available, only individual sessions. My stress levels decreased slightly since learning it appears NOT to have spread, so I nearly didn't go to the individual counselling...BUT...a conversation I had with a manager at the Canadian Cancer Society changed my perspective.
She mentioned that although I'm doing relatively okay right now (and I do mean relatively, every day is still a constant uphill battle), there will likely come a time where I feel the need for extra support beyond friends, family & online support groups. So, heeding her advice, I went to my appointment, and I'm glad I did. She gave me practical advice on dealing with work & insurance concerns I had, and she gave me a few brochures re: support services available in addition to counselling. For instance, there are courses cancer patients can take re: managing stress & relaxation, yoga, meditation, etc. She also mentioned that her door is always open, as the free counselling for cancer patients is available for eight years if needed. Be sure to check in your area to see if similar benefits are available. I am so glad I live in Canada!
To my delight, the first pamphlet is available online, so I'll post the link below. If I find any of the others online, I'll be sure to add to this list.
As for the lack of group support specific to myxoid liposarcoma, I was eager to take advantage of Cancer Connection's detailed peer support matching program. Wanting to make the best of an extremely challenging situation, I figured it'd be the next best offline alternative outside the Facebook group I found, and I was right. What they do is get a few details about your type of cancer, the journey you've been on so far & your current situation, and then they do their best to match you with someone whose experience has been similar to yours in as many ways possible.
Ever the realist, I suspected they'd have a hell of a time finding even someone with ANY type of liposarcoma never mind the *myxoid* variant, and indeed this was the case. However, do not let this discourage you if you're suffering from one of these rare cancers no one's ever heard of. What they did instead, was find three volunteers for me to choose from, of which I chose two. The first one had sarcoma in their leg removed via surgery but no other treatment, while the second person had a sarcoma in their foot, surgery & radiation. Both sarcomas they had were also very rare. So, between the two of them, I was able to get a lot of questions answered & find commonalities despite having different types of sarcomas. And it wasn't just a quick chat either. Combined, I spent a good 2.5 hours of my Saturday afternoon chatting with them. Words cannot express how grateful I am to both of them for not only taking time to talk to me but for sharing a very difficult period in their lives. Once I've come out the other side of my sarcoma, I will seriously consider giving back by signing up to be a peer support volunteer myself.
*[NOTE: The title of this post was inspired by the Placebo track "Without You I'm Nothing" from their album of the same name.]
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".]
04/18/15 - After experiencing a roller coaster of emotions throughout the week & some days coping worse than others, I finally picked up the phone to call the Canadian Cancer Society whose website I'd briefly checked out earlier in the week but felt to overwhelmed to really deal with at the time. I'm glad I finally took that baby step. As mentioned in my previous post, they have a peer support program, where they'll do their best to match you not only with someone who's had cancer themselves, but they'll try to match you up with someone who's been through the same kind of cancer you actually have, so that the support you receive will be more specific to your situation. I agreed to call them back once I find out if it's spread or not, as the experience of someone with just a tumour vs someone whose cancer has spread may be quite different. In addition to the detailed peer support match, I also discovered Cancer Connection, an online support community for cancer patients, also offered by the Canadian Cancer Society. I am really grateful to have found this outlet for support, as it will hopefully mean less leaning on friends & family whenever I'm feeling stressed out & fewer distressed Facebook posts. While I still plan to update this blog, I'm going to try to post less about IT on Facebook, leaving HAPPY stuff for FB & the more serious stuff for my blog & the support site. Last but not least, although they list a number of options for local places to get wigs (some of which are rather pricy IMHO!), the Canadian Cancer Society themselves actually has a bank of donated wigs AND headscarves, which are FREE of charge & on loan for as long as you need them during your treatment. Note, an appointment is required, so contact your local CCS before heading down for a wig or scarf. They also suggest coming in prior to starting treatment, so that you have them before any hair loss begins. So, on Tuesday, the day after I get my next batch of results, I'll be going in for my wig & headscarf - no they won't let me dye my wig purple, I already asked, LOL! - and I'll be following up to get that detailed peer support match. After two weeks of trying to deal with with all this on my own with just friends & family for support, I am finally ready to take that next step. While I couldn't have gotten through the past two months without my friends & family, there's only so much they can do, so I'm really looking forward to connecting with others who have &/or are going through the same thing. Something tells me I'll be needing them a lot in the months & possibly years ahead. Unless they've been through cancer themselves, people really have no idea. I've even had people suggest I shouldn't be worried because it's "just a tumour", to which I responded that it could still be a medium to high grade tumour & that this kind of tumour has been known to spread, so shrugging it off as "just a tumour" is much easier said than done! That being said, I'm finally on the home stretch of the waiting game. Hopefully, in two days, they'll have some serious answers as to what stage Im in, chances of survival, whether it's spread & TREATMENT DATES, so I can make my insurance happy & start moving forward from this limbo I've been stuck in over the past two weeks. This will be my last update till then. I'm off to do my best at imitating a relaxed human as I try to enjoy the rest of the weekend. PS - One thing I struggled with over the past week is trying to keep my inner "happy" going. Being the realist that I am, this can be quite a challenge at times. But I did manage to succeed here & there, with a few setbacks in-between. The thing to try to do is pick yourself up, dust yourself off & remember that things might seem different in the morning. I also try to find things that make me happy, such as talking to or spending time with a friend, walking my dogs, listening to music or even swooning over pictures of my favourite singer/songwriter for a certain band (three guesses as to who THAT is, LOL!). Point being, try to find things that not only make you happy but that take your mind off things, even if it's just for a while. [EDIT - 04/19/15] - Found two more great resources. :) - Liposarcoma Survivors - Facebook group for & by other sarcoma survivors & warriors. By far one of the best resources I've found so far. Just connecting with others who've been through this has taken a huge weight off my shoulders! - The Sarcoma Alliance - A site made for & by sarcoma survivors & their caregivers. Has some good info on there, re: diet tips for post-radiation, as well as some additional sarcoma info, just a name a few of the good things on there. *[NOTE: Post title inspired by the Placebo song & album of the same name, Without You I'm Nothing".]
04/15/15 - I think anyone who's ever gone through this journey of fighting cancer will tell you that it's an emotional roller coaster. One day you'll be coping fine & get a lot done, other days, you'll barely be able to get out of bed or the house - and that's BEFORE your treatment even starts. The latter totally applied to me yesterday. I stayed in my PJ's all day, barely got anything done & had to watch the season premier of Game of Thrones TREE times because I either couldn't retain anything due to lack of concentration or would dose off due to great difficulties sleeping over the past week. Fortunately, the sunshine returned both literally & figuratively speaking today, and so today has been a much better day. Took the dogs for a walk right after I got up & then went to the dentist to get that out of the way while I'm still well enough to do it. The walk, sunshine & seeing people who, for once, didn't poke me with a needle did me a world of good. Still tired, but I'm feeling better able to cope for now... I'm also feeling slightly less stressed after calling Healthlink today re: questions I had in preparation for my consultation & next batch of results this coming Monday. As the nurse & I were chatting, she recommended a great website done by Alberta Healthcare that has good & ACCURATE information! I'd also add it's EASY TO UNDERSTAND & is written in plain English. :) In particular, I've been wondering - or more aptly STRESSING - about my upcoming chemo & radiation therapy, as I had no idea what to expect. The above mentioned site has answered a lot of questions, and although some of the answers aren't pretty, it still really put my mind at ease. Here are links to the chemo & radiation sections: Chemotherapy: https://myhealth.alberta.ca/health/pages/conditions.aspx?Hwid=tf3284 Radiation treatment: https://myhealth.alberta.ca/health/tests-treatments/pages/conditions.aspx?Hwid=hw206439 If the above links don't work, just go to https://myhealth.alberta.ca and type either "chemo" or "radiation" (without the quotes) in the search box found on the upper right corner, then click the first link that comes up in the search results. Also, for those here in Canada either living with cancer or who have a loved one fighting the disease, I found this yesterday (one of the few things I managed to do!) @ the Canadian Cancer Society's website, where they talk about their free peer support program. If the counselling through the hospital isn't free or covered by my insurance, I'll probably check this out. Scratch that. I *WILL DEFINITELY* check it out regardless. I need all the help I can get right now! I also plan to inquire tomorrow what sort of support my employer's *free* EAP (Employee Assistance Program) offers specifically for cancer patients.
*[NOTE: Post title inspired by the Placebo song "Ask for Answers" off their 1997 album "Without You I'm Nothing".]
04/12/15 - Well, it appears the doctor wasn't just humouring me after all when he said there wasn't anything I could've done to prevent this. After five days of putting it off, I finally got around to Googling "myxoid liposarcoma". Whoever told me it was rare wasn't kidding. To my surprise, I had to dig a bit through the Google results to find the info I was seeking. However, I did manage to come across this, once again from the Sarcoma Help website (http://sarcomahelp.org/liposarcoma.html): "Perhaps the best characterized genetic association is that found with myxoid liposarcoma. This represents a translocation, or sharing of genetic material between two chromosomes. In myxoid liposarcoma, the translocation is between chromosome 12 and 16. The result is a gene called TLS-CHOP which is an oncogene, or gene that when expressed can lead to the formation of cancer. This particular translocation and its products are found only in myxoid liposarcoma and therefore are diagnostic of this tumor (Rubin 1997)." So, if I understand this correctly, basically, it's in my DNA, which seems to make sense, since my grandpa had a type of sarcoma at 85 in his elbow. His may have been a different subtype, though, as those with myxoid liposarcomas tend to get them between 40-60 years of age in their thigh. Still, it's nice to see evidence of this genetic link in writing, because despite what everyone's been telling me, if I'm honest, I never did stop blaming myself, even after the doctor told me it wasn't my fault. ***[EDIT/CORRECTION - 04/21/15]*** After finally getting my second consultation, I discovered what the above quote is referring to are just genetic markers to help identify WHAT variant of cancer doctors are dealing with! THERE IS NO KNOWN GENETIC component to myxoid liposarcoma! In fact, according to the Sarcoma Alliance website, scientists are still trying to figure out what causes sarcomas! Another interesting thing I stumbled upon in the above mentioned article is that myxoid sarcomas have a misleadingly benign appearance, thus explaining why my family doctor initially agreed that it SEEMED to appear benign but that more tests & a specialist were needed to be sure. Ugh, and now I know why I put off reading Google...once again courtesy of: http://sarcomahelp.org/liposarcoma.html: "There are four types of liposarcoma, each with its own unique characteristics and behaviours. 1. Well-differentiated liposarcoma is the most common subtype and usually starts as a low grade tumor. Low grade tumor cells look much like normal fat cells under the microscope and tend to grow and change slowly. 2. Myxoid liposarcoma is an intermediate to high grade tumor. Its cells look less normal under the microscope and may have a high grade component. 3. Pleomorphic liposarcoma is the rarest subtype and is a high grade tumor with cells that look very different from normal cells. 4. Dedifferentiated liposarcoma occurs when a low grade tumor changes, and the newer cells in the tumor are high grade. The risk of recurrence and metastasis with liposarcoma increases with higher grade." So, once again, if I'm understanding this correctly, myxoid liposarcomas have a tendency to have a medium to higher grade, and thus a greater chance of spreading. Greeeaaat. I think I'll stop reading now! Ignorance is bliss. Sticks fingers in ears & covers eyes...lalalalaaaaa!!! [EDIT - 04/19/15] - After reading some more of the material at sarcoma help.org, it seems there are two variants of myxoid liposarcoma. While myxoid liposarcoma can be intermediate in grade, there is a higher grade sub-type variant known as myxoid-round cell liposarcoma. I have no idea which variant I have but will know once I have my second consultation. I also did some reading on the five & ten year survival rates, and they seem promising, assuming of course the cancer hasn't spread. At the five-year point it's 88%, and it's 76% at the ten-year mark. This makes me feel a lot better. Now let's just cross every appendage possible it hasn't spread... *[NOTE: The title of this post was yet again inspired by a lyric within Placebo's "Post Blue" track from their "Meds" album. :) ]
04/10/15 - Finally, the day had come for my last round of tests...FOR NOW! Make no mistake, I'm well aware I'm most likely in for a lifetime of tests even if I manage to defeat the "alien" growing in my leg! But it's nice to know the tests are done for now...well...hopefully anyway! :)
So, this last one was a CT-scan of my chest & abdomen, in which I was required to fast for six hours before but drink a boatload of water within the 12 hour period prior! Initially, I mistakenly thought this was to fill my bladder, since upon my arrival, they gave me yet even MORE water to drink over...you guessed it...ANOTHER WAITING PERIOD! :p This time it was two hours & 1.5L of water! You can imagine my joy when I was informed it WAS okay to pee, as the water wasn't to fill my bladder but rather to make my insides glow, in conjunction with a second dye that would be injected by IV during the scan itself. Speaking of which, it was that extra special feels-like-you're-peeing-yourself-having-a-heart-attack-while-having-a-thousand-hot-flashes dye again, like that I experienced during my CT-guided biopsy! And there was more breath-holding, too, except this time on the inhale, and again talking machines. I like talking machines. :) Again, only pain involved was the IV - oh, and the tech who couldn't be bothered to HOLD THE DOOR for me as it SLAMMED into my arm that had the IV in it, missing the IV by just centimetres! Needless to say, I gave them an earful about that! I even explained to the guy I had a visual impairment, but he clearly didn't understand what that meant. Note to self, "Use your white cane ALL the tie at the hospitals, even when the area is flat & well lit for this very reason!" Don't need any more close encounters between heavy doors & my IV!!!
Anyway, this was the shortest of all the tests so far, only taking about 15-20 minutes once the two-hour waiting period was over. And again, this test in conjunction with the tests from yesterday, is to see if the cancer has spread, as this type of sarcoma has been known to jump over into the lungs in some cases. It's also a relatively rare cancer. Geez, when I got my Placebo-inspired "One Of A Kind" tattoo a week ago, that wasn't exactly what I had in mind! Leave it to me to get some kind of rare cancer that hardly anyone else gets, pppphhht!
On a happy note, while I was playing the waiting game yet again, I finally managed to reach my case worker for my short-term income claim, and it sounds like I shouldn't have any issues with it, which was a huge relief. She mentioned something about cancer requiring chemo/radiation therapy being automatic-claims, which I assume means it'd be automatically approved. I just hope the delays with the followup consultation & start of chemo/radiation aren't going to be an issue, since I've already missed four days of work this week. If I went back to work now, I'd have to start the required three-day waiting period all over again UNPAID before I could claim short-term income protection again! So, needless to say, although I'll have a week of waiting with no tests - hallelujah, NO TESTS!!! - I'm not going back to work. I did mention, though, that I haven't been sleeping well, forgot to eat supper one night & am worried about losing my temper with a customer due to the lack of sleep & stress that I'm under, so hopefully they'll be understanding & not penalize me for not returning to work while awaiting the next steps. I should know by the end of next week if there are any hiccups. She seems understanding, though, so hopefully all goes smoothly. Meanwhile, I'm going to take a much needed break from all this & enjoy myself this weekend with some very good friends. As they say, laughter is the best medicine, so I plan on stocking up big time!
On that note, I'm off for a much needed sleep. For the first time since getting my diagnosis on Tuesday, I feel like I might be able to get a good night's sleep...finally. I think all the time I spent with friends today has a lot to do with it, so to them, I say THANK YOU! You know who you are. :)
*[NOTE: Post title inspired by a line from Placebo's song "Post Blue" from their "Meds" album, another one of my all-time favourite albums & songs.]
04/09/15 - After rising at the crack of dawn for yet more tests, I finally made it into work to pick up a few things, drop stuff off, submit some unrelated insurance forms, and say my bye-for-nows.
Items I picked up included photos of my dogs which I plan to take to hospital with me, as well as some of the awards I have one over the years. While that might sound like I am giving up, far from it. But as a realist, I am a planner and so I have to prepare for the possibility that I may not be back and wanted to ensure my family would have my awards if that is the case. As I made the rounds to various colleagues, it really started to hit home that it could be a long time before I returned. Things were starting to get real and fast. I'm not sure who was holding back tears more, them or me. It was a sad day.
As for the tests, this latest batch included a bone scan of my entire body and a CT-scan of my thighs & backside. Both scans were done in an effort to determine whether or not the cancer has spread to my bones. First, they injected me with radioactive dye, which needed nearly three hours to set into my system. So back into the waiting room I went! Once again, it was a good thing I came prepared with my own entertainment! I can not stress this enough to anyone about to embark on the same journey! You're going to be going through lots of tests & lots of waiting, waiting & more waiting. Waiting in rooms, waiting for rides, waiting for result, waiting for dye, etc.... So, bring a book, bring a smart phone, bring a tablet, etc. While waiting, the receptionist was also kind enough to fax my short-term income protection application forms through, so at least that was one item crossed off the day's to-do list. :)
Once the dye had been absorbed by my system, I was brought into a room with a special nuclear camera rotating around me that was able to see the dye inside me while taking images of the bones throughout my body. It was done in stages, including my head, chest, abdomen, legs, etc. As they scanned my chest, I had to hold my breath NOT in the inhale but on the exhale, which sounds worse than it actually was. :) The machine actually talks to you, telling you when to breathe, when to hold, when to exhale & so on. Other than that, the test was totally painless - apart fro the injection needle. In fact, I even dozed off a few times despite having both my feet & arms bound, so that I could fit in the machine without limbs getting in the way! Who would've thought a bone scan would involve bondage, LOL!!! ;) Kidding aside, it took longer for the dye to set in than it did for the tests themselves, which only took an hour as opposed to the three hours for the dye! Afterwards, they did a quick CT-scan of my leg & backside, which involved me sitting on a special bench that was a camera. Again, no pain whatsoever. These were probably the two easiest tests of all the tests I've been through, and as always, the staff were excellent in describing what to expect.
And finally, the call I'd been waiting for came through with news they were able to schedule my last batch of tests for the next day.. As for getting the results, this may have to wait as the clinic is very full. Still crossing my fingers that I might get lucky and be able to get in this coming Monday. If not, then it'll be the following week, as they only hold this particular cancer clinic on Mondays. Ahh, the never-ending waiting! Good thing I'm a patient person most of the time!
*[NOTE: The title of this post was inspired by the Placebo song "Song to Say Goodbye" off their 2006 album, "Meds".]
04/08/15- So, what does one do the day after being diagnosed with cancer? While I can't speak for anyone else, I can sure tell you what I did! Needing to *do* something...anything to keep busy & stay productive, I dove right into my sea of insurance providers, spending the equivalent of more than an entire work shift digging into all my various insurances - mortgage, credit line, critical illness & short-term income protection! Between calling around every number under the sun to filling out what seemed like countless pages of claim forms, I started just after 8am (right after calling into work) & finally had enough around 4:30pm! Thankfully, I'd already compiled a list before leaving on my trip, so at least that was ready & waiting at my fingertips. I recommend everyone do the same, regardless of whether or not you currently have health issues, because it'll make life a lot easier for your loved ones, should something ever happen to you & they need to make a claim either for you or themselves.
What I discovered sure was an eye opener! Queue in that "Devil in the Details"! Now, we all know insurance companies have restrictions & exclusions, right? Well, did you know that credit insurance providers have a list of cancers they will NOT cover?!?! I sure didn't, though I can't say I'm really all that surprised. Annoyed, yes, but surprised? No! Ironically, I actually hope I am not covered, because in my case, being covered will mean that my cancer has spread, while being declined will mean that it hasn't and, of course, a much better prognosis on my part! So, while It'd be amazing to be mortgage free, I can think of better ways to do it, thank you very much! :)
Still, while the restrictions & exclusions are disappointing, the super logical part of me actually understands where they're coming from. With the high rates of cancer, they'd either go bankrupt or have to charge even higher premiums if they paid out to those with non-spreading cancers. BUT... They recommended that I apply anyway, just to ensure I've covered all the bases, even if the news from this latest batch of tests turns out to be good, relatively speaking.
So, here goes nothin'! <insert cheering squad> "Come on decline! Yaaay decline!!!"...At least where the credit insurance is concerned, that is. I'm still hoping the critical illness insurance will come through, to help with costs of any drugs not covered under provincial healthcare, and there shouldn't be any issue with the short-term income protection coverage through work, thankfully. As for long-term income protection, while I do have coverage, hopefully it won't be necessary!
*EDIT (01/04/16)* It turned out that you don't have to have metastasis or be at death's door to be approved for an insurance claim. The legalese of the fine print makes it sound that way, but in the end, for me, at least, that wasn't the case! So, even if you don't think your claim will be approved, APPLY anyway! There is a time limit in most insurance policies (within 90 days of diagnosis in my case) where you have to apply, and I took so long to submit mine because I didn't think there was any point, that I nearly missed that deadline! Fortunately, for me, I submitted just in the nick of time, and it's made a very stressful situation a lot easier to cope with!
*[NOTE: Post title inspired by the Placebo song "Devil in the Details" off their "Battle for the Sun" album.]
04/07/15 - So, it's been a week since my CT-guided biopsy. Went in to the hospital today for my results. The wait felt like forever, as I arrived an hour early & the doctor was running an hour late. Fortunately, I brought entertainment in the form of Placebo's "We Come in Pieces" concert video on my iPad, that was a much needed & helpful distraction. But alas, the time finally came & into the doctor's office I went...
First, they had a medical resident intern ask me a bazillion questions about my medical history & symptoms. Then she had me get into a gown & went away for ages, only to come back, ask more questions & leave again. This wasn't looking good. Finally she came back with the doctor, and after two long months, my wait for a diagnosis was over. It wasn't good. Yep, the C word...cancer...or more technically a myxoid liposarcoma, which is a type of soft tissue sarcoma.
Needless to say, my head's been spinning ever since. Had a little mini breakdown before leaving the hospital, but relatively speaking, I'm okay. Going to start the short term disability claim process tomorrow. I was actually crazy enough to consider going int to work...to, well, work, tomorrow but no... I'd like to keep my job, and the last thing I need is to lose my temper with a customer due to stress & then lose my job & much needed benefits because of it. So, I advised my manager that I may come in to pick up a few things, get the mailroom to fax my insurance claim & talk to a few people, but that's it.
Now, of course, I have a million questions, such as what stage am I in & what are my chances of survival? This will all be determined with...you guessed it....more tests. First up is a bone scan to see if it's spread to my bones. This is already scheduled for two days from now. Second is yet another CT-scan to see if it's spread to my abdomen or lungs...still waiting for date on that one, but they're trying to push it for this week. Then, hopefully in six days if we manage to cram all the tests into this week, I'll meet with the same doctor from today who's an orthopaedic surgeon (the one who'll be removing my tumour) & another doctor whom I assume is an ecologist, for further consultation. Then, I'll undergo three days & nights of in-patient "chemo-light", for lack of a better phrase, to "sensitize" my body for 10 days of out-patient radiation therapy. *Gulp*. Not looking forward to either of those last two, but they said it's better to do those first, to have as few complications as possible. Then, I have a month break to recover, and then regardless of whether or not it's spread, surgery two months from now to remove the tumour & hopefully save my leg.
In the meantime, I've jumped into action mode, doing what I can while I can. So, tomorrow, before popping into work, I'll be calling all of my insurance companies to start THAT part of the medical roller coaster that is my life right now. C'mon insurance, don't fail me now! Crossing every appendage possible that process won't be as horrendous as I'm anticipating it to be... Here's hoping they do large-print or e-forms.
And last but certainly not least, I began the task of telling my nearest & dearest the news. As soon as the doctor told me, I immediately felt guilty, wondering if I'd done something to cause this by not eating enough fruits & vegetables. I don't know if they were humouring me, but they seemed sincere when they said "No", and that "this type of cancer can happen to anyone" & that "it's just dumb luck who gets it". Telling my mom, aunt & best friend of nearly 30 years was the hardest. Everyone else I just did a mass message on Facebook. Sorry about that, but it was hard enough having this conversation three times, let alone another 70. Hope you all understand.
I also worry about how this will effect my mom, who's already said she'll move in with me during treatment if necessary, but that's going to be so tough on her with her work being on the opposite side of town. :( And my poor best friend... She's still getting over losing her mom to cancer. That just makes me feel even worse. :( Not like there's ever a good time for this kind of thing to happen, but seriously Universe, this is not funny, not funny at all. :/
Well, that's it from me for now... I'll write more when there's either more news or after I've had the aforementioned tests... Cross your fingers for me the next bit of news will be good! I need all the positive energy I can get right now!
*[NOTE: The title of this post was inspired by, yes - you guessed it, Placebo & their album & song of the same name, "Battle for the Sun", one of my favourite albums of all time.]
