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".]
07/06/15 - Quick update. Please forgive my lack of finesse in writing today. Got less than four hours sleep, as the anxiety of everything is starting to creep up on me, but here goes… Saw my oncologist today for my pre-surgery appointment. Everything’s on track. The bug bite from hell, though slowly healing (my foot’s still more swollen than usual), won’t have any impact on my surgery. He’s also not worried about all those nodules that came up, because everyone has nodules throughout their body whether they have cancer or not, so they’ll watch them & if any get beyond a certain size, they’ll take further action. Re: my concerns about the >25% round-cell component, he says that it does NOT change my current treatment plan, so he is not overly concerned about it at this point.
As for surgery itself, surprisingly, it’s only going to take two hours & he aims to remove my tumour (aka “the alien”) in one piece, which will reduce the chance of it spreading. I’ll be in hospital for about a week, possibly even less - yes, LESS! I juste hope they don’t try to push me out of there prematurely just to free up a bed. They’ll also do toxicology reports at the time, which will take two weeks to come back, if memory serves right.
I will have some physio in hospital, but considering I’ll have stitches still healing, not sure how much that’ll entail, aside from wobbling & hobbling around very slowly! Oh, and thank god, there’s no requirement for a skin graft, which is a relief. He’s expecting my recovery time to be about three months, so hopefully I’ll be done before my short-term disability runs out, cause otherwise I’ll be in for a substantial income drop if I have to go onto long-term disability. So, that’s pretty much it. I have a pre-surgery preparation appointment via phone tomorrow morning, as well, and on Thursday I have to call for my surgery time. I, of course, forgot to ask my oncologist several other questions, despite writing numerous questions down! But it doesn’t really help when you forget to write the question down in the first place! :p Damn it, I’m so tired right now, I forget the questions I forgot! :p Can’t even come up with a Placebo lyric to go along with this post! :( Zzzzzzz...
07/02/15 - For ages, I’ve been wanting to do one of these Thankful Thursday lists but just never got around to it! But with surgery being eight days away & an explanation of my recent scan results just four days away, it’s now or never, because next week’s going to be insane & I’ll probably be a basket case come next Thursday! So, here goes…twelve things I’m thankful for. :)
1. My mom & auntie - for being my rocks & the best family I could ever ask for.
2. My little dorklets, aka my dogs - for all their unconditional love, cuddles & companionship over the years & for letting me take a million photos of them, unlike a certain other cutie pie who shall remain nameless! ;) <3
3. My close friends, near & far - for embracing & I’m sure sometimes enduring all my little quirks & sticking around when the going got…is…tough, for making me laugh & keeping me sane…for giving me space to hermit when needed…but then dragging me out from under my rock from time to time.
4. Medical benefits - I may not have a job anymore but at least they let me keep the benefits for a bit longer!
5. Wellspring - for giving me a place to go...
6. Placebo - For being the mirror to my soul & one beautiful distraction! C’mon, did you REALLY think I could do a list without mentioning them somewhere?! :p
7. This amazing weather we’ve been blessed with this summer & this past spring & winter. I don’t know what I’d do if all of this had happened in the dead of a winter from hell! I think they’d have to cart me off to an institution somewhere!
8. Off! bug spray! Needs no explanation! :p
9. My house - If push comes to shove & I have trouble finding work once I’ve recovered from surgery, I can sell it if necessary. Hopefully, it doesn’t come down to that, but it could prove to be a bit of a safety net.
10. Hope - I’ve read so many stories of others in the same boat who have none. So grateful to at least have that luxury.
11. My smartphone! It may be slower than a turtle these days, but it’ll be my lifeline over the coming weeks!
12. Internet - see above line re: cell phone! :p
07/02/15 - It seemed innocent enough - a Sunday evening BBQ with a few close family members. Little did we know the danger that was lurking in our midst! Being lulled into a false sense of security with the mosquitos not being too bad yet this year, I forgot yet again to put on bug spray. You’d think I’d have learned my lesson the week before, when something other than a mosquito - possibly a wasp - took a microscopic chunk out of my right leg. It was red & hurt like a bitch for about four or five days but other than that, it healed up relatively quickly. So, little did I suspect what was coming next!
This time around, we think the culprit may have been a black fly, which is apparently known to take quite the chunk out of its unsuspecting victims! Well, I’d estimate the micro-attack happened around 10pm. By midnight, my left leg was oozing so much clear liquid, it ran don my leg. By 5am, there was a wide area around the bite that was red & by the following afternoon, my ankle & entire left foot were swollen, and the impact site was still seeping clear liquid! Oh, and blistering. Don’t forget the blistering!
Now, perhaps this is normal for some people, but not for me! Even when I’ve been stung, I’ve never had a reaction this severe, which leads me to wonder if my immune system is now super sensitive to certain bug bites post-chemo. After all, the whole reason my surgery is taking place eight weeks after my pre-radiation chemo is to avoid complications with wound healing. Not wanting to take any chances, I decided to call Health Link, who suggested I have a doctor look at it. So, off to a walk-in clinic we went, expecting to simply be prescribed oral antibiotics. In hindsight, Health Link actually suggested I see my family doctor if possible, but that would’ve delayed things by a few days at least, so I opted for the walk-in. Big mistake! As soon as the physician heard the “C” word, he was clearly out of his comfort zone, and before we knew it, we were being referred to EMERGENCY! Yes, Emergency….for a bug bite - albeit, a bug bite from hell, but nevertheless, a bug bite!!! His reasoning was that they may want to do an ultrasound & put me on IV-antibiotics, which he explained would work faster, so that I could get this cleared up in time for my surgery.
So, into the vortex of the hospital from hell, we went! Eight hours later, we emerged with stories of Buzz Lightyear & Pirate Porkchop, courtesy of a mom reading to her son across the waiting area, yet more tests and….drum roll please…ORAL ANTIBIOTICS with NO IV in sight!!! The emergency doctor said that in this case, IV antibiotics wouldn’t have made a difference time-wise. And after all that, they weren’t really sure if this was my system being hyper sensitive to the bite or in fact a skin infection. By contrast, the clinic doctor who sent us into a galaxy far, far away, actually went so far to suggest it was a cellulitis, a rapidly spreading skin infection! But they said we did the right thing, having it looked at quickly, as I do have to be careful being post-chemo & with surgery less than two weeks away. The frustrating thing is, next time, I’ll think twice about going to a clinic or emergency & just wait however many days to see my family doctor. Watch, that’ll be the time they’ll tell me I should’ve gone to emergency! :p Four days of antibiotics every six hours later, it is slowly improving. Hopefully, it won’t impact my surgery, which is now eight days away. It’s still pretty red & swollen but it’s better than it was.
Meanwhile, earlier in the week, I got a hold of all my medical reports available to date, as I needed them for insurance purposes. Now, remember those MRI images on CD from February I never should have looked at? Queue in the deja-vu! I really shouldn’t have read my reports either but just couldn’t resist. In addition to the nodules I already knew about on my spine & ovary, they also discovered one on my intestine. I don’t even recall them mentioning my intestine, so that totally threw me for a loop! And then came this gem: “We are unsure of their significance….Although we are not formally classifying them as metastasis at this time, we have chosen to follow them”. In a nutshell, they have no idea if it’s spread, so they’re playing the wait & see game. Fast forward now to late June, where the tests reveal the same nodule on my spine but no mention of the nodule on my intestine. They didn’t bother to check my ovary, since my ultrasound couldn’t find anything back in April. However, I now have a new nodule that wasn’t there before on my thyroid & the word lesion came up, and yet still, they’re unsure if its significance, saying “There is no evidence of definite metastasis, which to me means, they have no idea at this point! Still, with nodules on my spine, intestine, ovary & now thyroid, I’m needless to say, a bit worried. Hopefully, my oncologist will clarify everything next week when we meet before my surgery. The good news is, the alien hasn’t grown, but it’s a bit bigger than I was initially led to believe. It turns out, it’s actually 25x13x8.7cm.
As if starring in my own personal episode of When Bugs & Aliens Attack wasn’t enough, there’s MORE! After nearly two decades with the same company, I learned I’ll be out of a job once my medical eave is done, as the department I work in has permanently closed! Seriously, Universe, what ARE you trying to do to me?!?! Enough already! Fortunately, they’re allowing me to continue my current medical leave for as long as necessary. Once recovered from surgery, my severance pay & benefits package will last about a year. Thank god, because finding a job when you already have a disability is hard enough. Add in the additional complication of cancer scans every three months for the next two years & every six months for the five years following that, and well, let’s just say searching for work could be quite a challenge. Grateful yet terrified pretty much describes how I am feeling these days! Anyone know of a good Canadian insurance company that’ accepts cancer patients & survivors??? Trying my best not to panic. Hopefully his chapter's end will open doors to something better & much more inspiring, a job that i can be proud of rather than being just a paycheque.
They say things happen for a reason, and sometimes I wonder if there just might be something to that. A week before all hell broke loose job-wise, I began attending the Visualization & Relaxation sessions at Wellspring, and boy are they coming in handy! Tried my first self-guided meditation last night while out on my deck, alongside the soothing lullabies of my water features. I fell asleep! D’ya think it worked? ;)
Eight days till the alien gets evicted from my leg!
"I, I, I, will battle for the sun, sun, sun. And I, I, I wont stop until I'm done, done, done. You, you, you are getting in the way, way, way. And I, I, I have nothing left to say, say, say.
I, I, I, I, I will brush off all the dirt, dirt, dirt, dirt, dirt, dirt, dirt. And I, I, I, I, I will pretend it didn't hurt, hurt, hurt, hurt, hurt, hurt, hurt, hurt. You, you, you, you, you, are a black and heavy weight, weight, weight, weight, weight, weight, weight. And I, I, I, I, I, will not participate, pate, pate, pate, pate, pate, pate.
Dream brother, my killer, my lover. Dream brother, my killer, my lover.
I, I, I will battle for the sun, sun, sun, sun. Cause I, I, I, have stared down the barrel of a gun, gun, gun, gun, gun, gun, gun. No fun! You, you, you, you, you are a cheap and nasty fake, fake, fake, fake, fake, fake, fake. And I, I, I, I, I am the bones you couldn’t break, break, break, break, break, break, break, break!
Dream brother, my killer, my lover. Dream brother, my killer, my lover. Dream brother, my killer, my lover. Dream brother, my killer, my lover. Dream brother, my killer, my lover. Dream brother, my killer, my lover.
I, I, I will battle for the sun.”
- “Battle for the Sun” by Placebo
*[NOTE - Post title also inspired by Placebo’s song “Battle for the Sun”, which can be found on their 2009 album of the same name.]
06/12/15 - It’s been a while since my last update, so I figured it’s about time I put in an appearance here.
Feeling rather emotional today, having finally made it out to Wellspring to check out two of their many programs. During the music jam, I came *this* close to breaking down sobbing during "Puff the Magic Dragon" of all things. That song brought me to tears as a child, so perhaps it's not that much of a stretch. However, I think the emotion driving today's tears ran much deeper, sitting in a room with a bunch of strangers, all of us with cancer, singing about friendship, loss & grief. And you thought it was just a nursery rhyme? Think again! That song is heartbreaking! Even though prognosis is often good for most of us with myxoid liposarcoma in the leg, it still unavoidably makes you confront your mortality - consciously or not. Singing about little Jackie Paper not coming ‘round anymore hit home like a ton of bricks - and unexpectedly so. Thank god, I just barely managed to avoid a complete breakdown, *phew*!!! Something tells me the tunes in that songbook (which is probably 2 to 3 inches thick, by the way!), weren't chosen at random. There are quite a few lyrics that jumped out at me - from living in the moment to finding strength to look outside yourself & everything else in between. It's funny how music never ceases to drag emotions out of you, even those buried deep down. You know, the ones you THOUGHT you were done with?
That said, the acoustic sing-along ended just in time for me to pull myself together. I then moved on to the women's group, where we spent two hours sharing our own personal cancer experiences & information. Never thought it was possible to feel grateful & terrified simultaneously, but that was me today. The group is a mixed group, meaning it’s not limited to just one type of cancer patient. Thank god, because if it was only my type of cancer, there’d be no one there but me! What really hit me were the brave stories from those who started out with one kind of cancer only to develop yet another type of cancer after beating the first one. Two of them in particular, came across as incredibly brave & positive in spite of being to hell & back not once but twice & even three times. Hearing stories like that really makes me wonder, though. I already know about the chance I could have a reoccurrence in that same leg due to radiation treatment, and I already know about the chance it could metastasize to my lungs or abdomen, but what I'm really curious about now is the likelihood of developing another seemingly unrelated type of cancer later down the road. From what I’ve observed, it seems to happen quite a lot to people whose cancer originates in an organ. No idea if liposarcoma survivors are equally or less prone to this same pattern. I shall have to inquire about that when I meet with my oncologist at month’s end.
Other topics that arose were the issues of being released from hospital too soon & the complications brought on by delays in home care. Thankfully, I have a wonderful mom who's going to stay with me after my surgery in a month till I've recovered well enough to manage stairs, but she can only take so much time off work, which means I'll probably need to get home care, so this part of the discussion was particularly insightful. The removal of the alien in my leg takes place exactly four weeks from today. The facilitator of the women's group suggested I speak to the hospital NOW to request a social worker to help organize home care well in advance of surgery, so although today was emotionally draining, I'm glad I went even just for that one peace of advice alone. When I asked my oncologist about home care, he just said the hospital would organize that once I'm on the ward. Sounds like he may be unaware that some patients are being sent home before they're ready. Hopefully, I won't be one of them! Perhaps I should invest in a pair of handcuffs to chain myself to the bed if they try pull a stunt like that on me! :p
Thank the universe for my dogs who gave me lots of kisses when I returned home. Nothing beats the warmth of canine cuddles! <3
Whew! Okay, now that I’ve gotten all that off my chest, here’s an update on my chemo & radiation therapies. After three months of stress & worry over possible side effects, I feel I’ve been extremely lucky. Unlike one of my hospital roommates who was on the same type of chemo for a similar type of sarcoma, it took two days before I began to experience nausea, which then lasted five days. Sweets, such as chocolate, began to taste weird & spicy food became turbo charged overnight, but thankfully NO iron-tasting food!!! It took about a week before I resumed normal eating, though I use that term loosely, since to this day, I still don’t get normal hunger signals like I did before the cancer. I suspect this is due to the stress response that kicked in when this medical roller coaster began back in February. Still, it could’ve been a lot worse! By contrast, my chemo buddy was projectile vomiting from day one & felt miserable the entire time. You know how people experience survivor’s guilt? I actually felt chemo guilt, because my response to the exact same treatment was so different from her’s! Before my much milder nausea kicked in, my biggest challenge was frequent fatigue, which continued during & after, my radiation sessions. Besides that, I experienced weakness & increased soreness within my leg muscle, skin tenderness & a bit of pealing during & after radiation - the fatigue being the most significant side effect. Some days I would start out feeling relatively ok but was absolutely exhausted after the radiation session to the point where I’d fall asleep sitting up on the couch in the middle of the day. Other days I was just tired all the time regardless of how much sleep I got or whether or not I had a session. But once again, I’ve been relatively lucky. One day while waiting to go into radiation, I overheard a crying boy who was also undergoing radiation treatments, saying “I'd rather die than go through this again”. Cancer is a challenge for everyone who goes through but hearing those words come from a child’s mouth really throws you.
Chemo, which was supposed to last three days, ended up stretching to almost four days, due to delays on the day one. First, the PICCS line insertion ended up taking not one but THREE hours! The line decided to go UP into my neck instead of down to the large artery near my heart! As they flushed my system trying to figure out its location, I could hear water rushing through my ear! Note, there was nothing actually inserted into my ear, so to say this was a surreal feeling would be an understatement! And every time they flushed me, I could taste the saltwater of the saline solution! Several flushes & x-rays later, they finally had it where they wanted, so I was taken upstairs to settle into my room & wait…and wait some more. It was five hours AFTER the PICCS line was complete before chemo even started! But it wasn’t all bad. They made me do a funny “dance” before each x-ray, presumably to… Well, you know, I have no clue why but I’m sure there’s some scientific or medical reason for it! I just wanted to burst into a chorus of “Y…M…C….A!”, LOL! :p Good thing I refrained, though. My PICCS insertion is STILL healing a month later & I still have bruising around the insertion point. They sure weren’t kidding when they said chemo can effect wound healing.
Speaking of dancing, during my sixth radiation session, I discover I had the option to have my OWN music playing while undergoing treatments! Call me easily amused, but I was absolutely ecstatic by this news, because of course, music makes everything better! So, what better companion to join in my “battle for the sun” visualizations than the melodies of Placebo themselves for my last three sessions! :D I’m sure they must’ve thought I was nuts, as I laid there tapping my foot & singing along to the tunes in the middle of treatment! :p For those wondering, the radiation treatments themselves don’t actually hurt during the session. It’s the buildup in your system that eventually causes side effects. Hell, getting off that hard treatment bed hurt more than the session itself! They had a really neat faux skylight to help you relax, though, that made it look as though you’re looking up at blue sky, trees & fluffy white clouds. I kept threatening to take it home with me! Seriously, I wonder how much those cost!
So, two weeks have passed since the end of treatments. I still have a brain like a civ, concentration isn’t what it once was & fatigue levels are up & down but better than what they were. My anxiety levels are starting to creep back up, though, as my surgery date looms ever closer, so I’m trying to keep things as stress free as possible. And then there’s the hair loss, which took longer than expected but alas, it’s happening. The week after radiation ended, I noticed more & more single strands coming out. However, by two weeks after radiation, it looked like I lost half a sheep just from what fell out in the mornings alone! Have you been wanting to take up knitting or perhaps stock up on wool for that winter sweater you've always wanted?! Look no further, just give me a few more weeks & I'll have all the wool you need, LOL! Oddly enough, I was more amused than distressed by the miniature sheep in my garbage bin. What freaks me out more are my lop-sided eyebrows! As they said might happen, I’ve lost the end of one of my eyebrows! It looks totally weird to me, but that’s probably because I’m more self-conscious of it. My mom forgot all about it when she came to visit, so it’s nice that it’s less noticeable to others.
Now that chemo & radiation are done & my energy is getting better, I am finally taking advantage of the local support programs, which I wouldn’t be able to do while working. Thankfully, my insurance company is allowing me to continue to be off until after I’ve recovered from surgery. I also plan to use the time to get organized before surgery, both at home as well as with the hospital, and complete the insurance forms I just haven’t had the energy to deal with. Hopefully, I’ll tackle the latter over the next week or two! I also have more diagnostic tests coming up, as well asa a pre-surgery consultation with y oncologist to learn how well the chemo & radiation worked. Although radiation may not actually shrink the tumour, it’s supposed to “clean up” the edges, so that my oncologist can get cleaner margins while removing the tumour, thus reducing the amount of healthy tissue that has to be cut away in order to get all the cancer.
And on that lovely note, that’s it from me for now! I’ll probably post one more update before surgery, which takes place in early July. I don't know if I"m just lucky or stronger than I thought, but whatever the case, I hope it continues into the next phase of my treatment & recovery! After all, what doesn't kill you makes you stronger, right?
PS - Many thanks to all the volunteers & participants at Wellspring! Although today was very emotional for me, it's nice to finally be able to talk to people in person who truly understand. I truly appreciate your time, support & bravery. I feel very blessed to have found this organization. :) And much love & hugs to all my friends & family who've been there for me ove the past few months! I couldn't have gotten through them without you!
*[NOTE: Title of this post was inspired by Placebo's "Bulletproof Cupid" off their 2003 album, "Sleeping With Ghosts".]
