05/11/15 - Wow, packing for 3.5 days in hospital is almost as nuts as packing for one of my Placebo treks! Just substitute the concert tickets, t-shirts, boots & excitement with a meds list, nighties, slippers & anxiety! :p I even have my obligatory tech for killing time, plus I'm STILL up packing & doing laundry at stupid o'clock JUST like one of my road trips! Now if only one of the nurses looked like Brian Molko, I'd be all set! ;) Wish me luck! 3.5 days of overnight 24 hour chemo, followed by the first two of 10 radiation sessions this week. Someone give me a time machine, so I can travel back to March & relive my last roadtrip instead!!!
*[NOTE : Post title inspired by lyrics from the song "Julien" by Placebo off their 2009 album Battle for the Sun.]
05/07/15 - Being a self proclaimed realist - at times, perhaps even a pessimist - it has come as quite a surprise to me over the past month how upbeat I seem to come across as to people, and how my light, energy & sense of humour apparently shine through. I've lost count of the number of times I've been told how positive & strong a person I am. It's to the point where I'm almost starting to believe it myself. Almost. Perhaps it is for that reason, I hesitate to post what comes next. When I originally started this blog, it was not only meant as a form of catharsis for myself but also a way to help others walking a similar path. However, with any journey there are ups AND downs, and with myxoid liposarcoma being so rare, there are a LOT of downs. I want those fighting this disease to know there are others in the same boat, so I'm left with no choice but to bare my soul in the words that follow, because this needs to be said.
Having read the struggles of other liposarcoma fighters & survivors, I see I'm not alone in that this disease is never far from our thoughts, no matter how hard we try to fight it & no matter how brave others think we are. Twice now this past week, I've noticed that while spending time with family &/or friends, I feel fine while we're all together, but as soon as everyone leaves, suddenly a profound feeling of sadness comes over me. Upon a bit of reflection, the only explanation I can come up with is that, both literally & figuratively, their lives have gone on, whereas mine's been stuck in an inescapable limbo. It's always with me & although I have occasional moments where I manage to briefly free my mind, it's never far off... I feel like my world's been on hold for a month since getting my diagnosis as I go from one scan & doctor appointment to another. Rarely with those close to me, am I lost for words, but I'm starting to get that way, because lately I see doctors & nurses more often than I see anyone else. Also, with just four "days of freedom" left before starting my first ever round of chemo & radiation, things are starting to get real & fast. My life was already changed forever a month ago but I feel like it's *really* never going to be the same after treatments begin... Ironically, it was exactly one month ago today that I got my diagnosis.
Yesterday, I joined a local cancer support organization called Wellspring, which offers a ton of completely free wellness programs for those facing any type of cancer, so hopefully this will help combat these feelings of isolation. But first, I must get through the next 2.5 weeks of treatments. Hoping this will be the first and last time I go through this, but with recurrence being a very real possibility within my lifetime, I'm bracing myself in the knowledge this may only be the beginning... Scans every two (or three?) months for the next two years, then every six months for five years. This isn't going anyway any time soon, even if I do win round one of the battle.
It's been a while since I posted a song of the day, and this seems like a perfect time to bring that back. Believe it or not, for once it's not a Placebo song but rather my other musical favourite, Marilyn Manson! :) Can't believe in three years, this song will be 20 years old, but it describes my emotions perfectly as though it was just written yesterday.
Oops, well, so much for today's post being a Placebo-free zone!!! Tthat lasted all of two seconds, LOL! I'm actually going to post two songs of the day, the second being "One of a Kind" by Placebo from their 2006 album "Meds". Dear Universe, when I had these lyrics tattooed on my body just four days before being diagnosed, having this very rare cancer wasn't exactly what I had in mind! :p
*[NOTE: The title of today's post was inspired by lyrics from two songs: "Disassociative" by Marilyn Manson, which can be found on their 1998 album, "Mechanical Animals", and "One of a Kind" by Placebo off their 2006 "Meds" album.]
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.]
