In 2015, my life was forever changed when I was diagnosed with a rare and high grade form of cancer in my left thigh known as myxoid round cell liposarcoma. This is my journey...02/28/15 @ 6:45pm - "It Is a journey into the unknown...” - Brian Molko:
After two extremely stressful weeks of waiting to find out what’s wrong with me, I was diagnosed just one day ago with a defined mass in my upper left leg. It remains to be seen whether or not it’s cancerous, but after reading the story of a woman with a similar diagnosis, I was inspired to start a blog of my own as I begin my journey, in hopes of helping others just as her story has helped me. That said, although my roller coaster ride with the healthcare system only just began two & a half weeks ago, I realize now in hindsight the signs started appearing nine to ten months earlier. I just misread them. So, here’s the background to my story.
I began experiencing discomfort in my left leg just above the back of my knee during my daily walks to & from the train station, but chalked it up to muscle strain. What was odd, though - and this really should’ve been my clue to...GO TO THE DOCTOR!!! - was that when I sat down on the train, the pain should’ve dissipated since I was then relaxed, but it didn’t. It got to the point where I actually preferred to stand up, rather than sit down, as it was more comfortable! Some days were better than others, so I just soldiered on & figured it’d eventually fix itself as I walked more during the warmer months.
Fast forward to fall 2014 where a friend suggested it could be my sciatic nerve. This seemed plausible, as I noticed massaging that area actually seemed to lessen the symptoms, which had returned after seemingly waiting in the wings for a while. But then come November or December, I began to experience leg pain while sitting on the toilet (sorry to share this, but it’s true!). It was further up the leg, at the back of where my leg meets my hip. Still, I continued to fool myself into thinking it was my sciatic nerve. I mean, who would’ve thought of a tumour? I felt fine otherwise. However, as I was massaging the sore part of my leg trying to get comfortable, I noticed my left leg seemed quite a bit more “firm” than my right, which was & still is much softer. I then asked my mom if she thought my leg looked swollen. She said no, so I thought it was either all in my head or perhaps a difference in muscle mass, but I'm not a small person, so I can see how she could have difficulty seeing the swelling. Still, you know how they say…one side of the body is usually stronger, longer, shorter, etc.? I thought perhaps it was just that. Little did I know, I was so right but for all the wrong reasons.
It wasn’t until the 9th of February 2015, when I asked my mom yet again if she could see swelling in my leg that she was finally able to tell the difference. And boy was there a difference. The very top of my upper left leg was almost twice as wide as that on my right. Later that evening, I pulled out the measuring tape. The difference was undeniable - 2.5” more in diameter on my left (and I originally mis-measured it as 3-4”)! Needless to say, I started to panic with thoughts of it being a blood clot - NOT a good combo when I'm about to get on a plane in two weeks with a friend to follow Placebo, our favourite band, across the UK! Then I made the mistake of going on google, where amongst blood clots & other things, the C-word appeared. Cancer. The doctor’s office was closed the next day, so two days later, I got onto the phone to my doctor’s receptionist to see if she wanted me to move up the date of my upcoming physical. She told me to get an emergency ultrasound. As if I wasn’t already freaked out enough, this sent me over the edge! I stubbornly went back to my work desk, though, briefly contemplating actually TRYING to finish my shift, but there was just no way. I was on the verge of tears which soon began flooding out as I tried explaining to a coworker that I was leaving to go to emergency.
And it is here that I’ll switch to more of a point form, as I copy snippets of various Facebook posts to friends & family, chronicling the next two weeks that followed.
02/11/15 @ 12:08pm - Admitted to emergency for emergency ultrasound to see if a blood clot is swelling my upper leg. Super freaked out.
5:40pm - Update: Had xray, blood tests & ultrasound. They didn't find any blood clot but they did see some calcification on the xray. Have to get MRI in the next few weeks to see if there's a mass further inside.
10:05pm - Finally got home about an hour ago after being at the hospital for almost 9 hours! Thank you to my wonderful aunt who came out on her day off to support me, and thanks to everybody who kept me busy on Facebook while I was killing time waiting! It's been a long day and I am exhausted! PS - is it March yet???
02/18/15 @ 09:49pm - Starting to get annoyed with this province's health care & it's only been a week! Called my doctor's office today to see if they wanted me to move my appointment till after my MRI was done. I mentioned the hospital said it'd be about two weeks till I got a call, to which the receptionist suggested I should've already had a call by now even though it's only been a week. She suggested I call the hospital to ensure they have all my info correct & gave me the number to the MRI unit. Now here's where things go pear shaped! I call the MRI unit & they have no record of me! They said to call my referring physician but the freaking doctor who referred me is not my regular doctor but was the emergency room one! So, I left her a message asking if she had a contact number for him, since she works in the same hospital! Meanwhile, I called Health Link & they suggested I call another number re: my hospital documents, but they want $25 for copies of hospital docs! I don't want the docs, I just want to know if they have my MRI requisition if it it got to the right place to get me on the supposed priority MRI list! Ugh!!!!! So, now I'm going to check with my doctor's office tomorrow to see if they actually got a copy of the requisition or not. If not, something tells me, they lost my requisition at the hospital & I'm going to have to start the wait all over again after seeing my doctor next week! I know they got the results from the tests that have already been done, though, so at least that's a plus.
02/19/15 @ 6:47pm - Yay! They found my MRI requisition! There is a backlog so they haven't entered it into the computer system yet. It only took me calling around to five or six different departments going full circle till I finally ended up with somebody in the emergency department who knew what the hell they were doing and got me the right information! But at least I know I am NOT lost in the system. :)
02/20/15 @ 12:16pm - Ugh, they booked my MRI for when I'm away!!! I left a message asking to rebook. Blah. And contrary to what I was told before, it's on the other side of town. Hopefully the rescheduled one will be in the NE! [Additional note: I was really worried about flying without knowing what's going on with me. Plus, no one gets between me & my beloved Placebo dammit!!! They will have to drag me off before I cancel this trip!!! My friend & I had been planning & looking forward to this trip for three months...cancelling was just not an option. Period.
02/21/15 @ 5:11pm - Thinking of paying to have MRI done, so I can get it done this week. Going to call Monday to confirm price & find out if I need a requisition.
02/23/15 @ 7:58am - The private MRI place could get me in tomorrow, so now playing phone tag with the hospital to see if they can fax the requisition over to them. FYI, the price has gone up from a few years ago!
9:32pm - Re: the cost of a private MRI. It was $600 a few years ago. It’s now $770 NOT including the dye. That’s an extra $200!. I don't have a choice, though, the public system cannot get me in before my trip. I confirmed with the south hospital. They will not move an appointment forwarrd, only backwards. Looks like it's going to be Wednesday or Thursday now for the private MRI.
9:34 pm - Oh and the north hospital still doesn't have my MRI requisition back either! They couriered it to the south hospital and have been trying to get it back from them via fax, but SH hasn't received the courier yet! Why they didn't keep the original or a copy, I do not know! My regular doctor's receptionist faxed it to the private place instead! She's about as impressed with the NH as I am and is even less impressed with the SH!
02/24/15 @ 9:57am - MRI appointment confirmed for 9am tomorrow. *Huge sigh of relief*
02/25/15 @ 8:25am - At the diagnostics place with my auntie.
10:36am - MRI all done, have a CD of it.
10:41am - Going private has its advantages! They let me listen to the radio during the MRI! As for the MRI itself, I didn't care about the tunnel thing or the knocking, it was my back that drove me crazy! So glad that is done with! Now off to an early lunch with Auntie before going to work for the afternoon. Hopefully, my doctor will have the results by tomorrow in time for my appointment with her on Friday. I will keep you all posted.
11:46am - Off to work now for half a shift. Feel much more relaxed and better able to cope.
5:26pm - About to look at the CD of my MRI…not that I’ll know what the hell I’m looking at, but….going to look anyway. Is it Friday yet??? Tomorrow’s going to be the longest day EVER. Still debating whether or not to look at today’s setlist of Placebo's Dublin show but worried (totally irrationally, I might add!) that I’ll jinx myself & not be able to travel…so ummm…going to try to distract myself by doing my taxes tonight instead. Joy.
6:55pm - Ummm...bad idea. Really bad idea. Note, if you ever get an MRI CD, wait until *AFTER* you've spoken to your doctor to look at it. Excuse me now while I go puke. [Side note: I knew right then & there it was a tumour but didn't want to say anything till I knew for sure...though I did confess my suspicions to a few people offline...
7:44pm - OK, not like I'm a doctor or anything, but if this is what I think it is, I think I should be ok to travel. Of course, now that I've said that, I've probably screwed myself over & will be told the opposite. OK, sorry, I'll shut up now till I actually know something.
02/26/15 @ 5:24pm - So glad today is over! Longest day ever! Can't wait till tomorrow, whatever news it may bring. And then I'm going to check that damn set list (for Placebo’s UK/IRE tour, which just started today) & drool over Brian Molko (Placebo’s lead singer/guitarist/co-founder) on YouTube!!!
02/27/15 - "The Never-Ending Why": Preliminary Diagnosis...FINALLY Some Answers:
7:30am - Broke down sobbing at breakfast this morning. Feeling overwhelmed with stress & terrified.
8:39am - Doctor’s receptionist just called. They have my results. Doctor hasn't seen them yet but receptionist has & says I'll need follow-up & to be early if I can. The doctor will look at them & discuss with me today. On my way now. Scared shitless. Mom will meet me at the doctor for emotional support.
9:05am - This could be my theme song right about now…
"The Never-Ending Why” - Placebo
http://www.deezer.com/track/17892646?utm_source=deezer&utm_content=track-17892646&utm_term=139056733_1425150783&utm_medium=web
9:45am - T minus 11 & counting. Receptionist seemed surprised i was so worried about my MRI, so hopefully that's a good sign!
10:11am - Sung to the tune of without you I'm nothing: “Tick...Tick tok...tick, tick…tick...tick tok…tick tok…" In my gown now waiting…..
12:31pm - Good and bad news! First, the good... I can fly, I can fly, I CAN FLY !!!!!!!!!!!!!!!!!!!!! 16 more sleeps suckers!!!!! :) :) :) And there is no blood clot, so I don't have to worry about blood thinners or any of that. I'm still going to get compression stockings, though, for the flight. Now for the bad news... I was right, it is a mass, but at the moment it does not appear to be cancerous although more tests are needed to confirm. But its shape and structure makes it look like it is a benign mass. Whether or not they will remove it, remains to be seen. If it's benign, they may choose to leave it in for the time being. Also, on the positive side it's not attached to the bone, its in the muscle which means that even if it is cancer, I don't have to worry about amputation.
02/28/15 - One Day After Diagnosis:
8:30am - It just dawned on me WHY they might NOT want to remove it for as long as they can, because well....I rather need my leg muscle for walking & general movement!!! So, now I'm wondering, how would my ability to walk be *if* they do have to remove it? My doctor did say the recovery time would only be two weeks but that I wouldn't be running around & jumping up & down for a while after....BUT the way she worded it makes me think I would eventually regain full use of that leg, which is promising. So, now I'm wondering, does muscle regenerate??? Would I be able to climb stairs?? Living in a split level could make that interesting to say the least. Hmmm...*ponder* Wonder if she'd be kind enough to answer questions via phone without me having to trek across town again... I'll ask Monday. Off to try to get a bit more sleep now. Fell asleep on the couch as per usual!
10:11am - Post to family & friends: Hey everyone. I know I've probably been driving you all crazy the past two weeks with my worries about my medical stuff, but I have one more favour to ask of you. Please read this article:
Sandra's Sarcoma Story - Malignant Solitary Fibrous Tumor:
http://sarcomahelp.org/stories/sandra.html?1=1&p=3&id=38
It's by a woman who had a similar kind of mass in her upper leg, except hers turned out to be cancer. Even if mine turns out to be benign, I have a feeling my journey will be very similar to hers, as I think they will recommend radiation to shrink it if they decide to remove it. Words can not express how much I relate to every single word she wrote about how she felt during her journey. And on a lighter note, I had to laugh when she wrote about going to see Cher before starting her treatment... So similar to my situation, just insert Placebo for Cher, LOL! Anyway, please take a few minutes to read it, so that when I'm driving you crazy, you might have a bit of understanding of what I'm going through. Thanks & many hugs to you all. :) - PS - I think I'll start a blog of my own somewhere, in hopes f helping others just as Sandra's story has already helped me as I begin my own journey. :)
11:50am - Today’s “My Life in Song” lyrics are brought to you by Marilyn Manson: “...To be this young, I’m oh so scared. I wanna live, I wanna love, but it’s a long hard road out of hell…”
Long Hard Road Out of Hell - Marilyn Manson
http://www.deezer.com/track/17684797?utm_source=deezer&utm_content=track-17684797&utm_term=139056733_1425148530&utm_medium=web
12:00pm - Decided to take today to relax, be good to myself & PACK (yes, two weeks before my trip! Not that I’m excited or anything! :p !!!! And I'm making it a point to stay in my PJ's all day, haha! After the hell of the past two weeks, I think I can get away with a lazy day. :)
9:48pm - It's ironic, you often hear music fans talk about this band or that band saving their life, but in my case, this may literally be true. Had I not been so determined to ensure I could safely fly to see Placebo over in the UK, I'd have never paid to get an MRI done. I would've waited for the public system, which was more than happy to make me wait over a month after my visit to emergency before getting me in for an MRI. So, to Placebo, I think you from the bottom of my heart. <3
*[NOTE: The title of this blog & subsequently its first post were inspired by lyrics from the song "Hold On To Me" by Brian Molko, which can be found on the album "Loud Like Love", Placebo's 7th full-length studio album.]
