Parole Calls

Have you ever wondered what it would be like to participate in a clinical trial?  Well I hadn't, prior to a few months ago.  I have always been against "big pharma," though I support organ donation, blood bank, stuff like that, I have always preferred medical methods or remedies that are more local, natural, and maybe even a bit pagan.  Usually you can sleep off whatever ails you, especially if you snooze in the sun!

Apparently now I also support cancer research by way of consenting to being a guinea pig for the medical big-wigs in Chicago.  It is very interesting actually, once you get into it, though I still find it a bit odd if I let myself think about the fact that I have yet to go to Chicago, but samples of my blood and tissues live there now. Every time I go to Sunnybrook for my treatments or other visits along the scheduled trial dates, they take about 20 vials of blood, in exchange for a nice little bottle of apple juice.  They use this to determine that I am healthy enough to continue receiving treatments, but also to track trends in my liver and kidney function, store some for future use, and various other details along the way.

"The way" is about a year and a half: 60 weeks plus eight weeks for monitoring after the trial ends - and I belong to them. I cannot travel out of the country, except to go to the US if I am close to a cancer centre (which, really isn't too much of an inconvenience because I don't feel up to jet-setting right now anyway, except for a possible attempt to visit my Mom in Florida, which I'm told I can do because they are close to Tampa, in case of emergency).  I wear a medic alert bracelet for the duration of the trial, which doesn't bother me except on CT scan days, they're trickier than the average bracelet to take off and put on when you're in a hurry to get in the gown! and the bracelet alerts medical help to check my wallet for a detailed card with numbers to call should I mysteriously arrive at a medical emergency with an odd set of symptoms. It's just one step shy of being microchipped and tracked by GPS I suppose?? It's a bit creepy but I do appreciate the support.

This brings me to the parole calls.  Every Tuesday morning I have to be home, although they will begrudgingly call my cell if I happen to miss the first ring. The lovely nurses of the Sunnybrook Melanoma Team phone me to check in with my symptom report.  We go through the same list every week and I have to gauge the severity of the side-effects I am experiencing. Its very methodical and I'll spare you the gory details, but I have dubbed it my weekly "parole call," much to the enjoyment of the nurses. 

They must deal with a lot of cranky people (city??) because they still seem taken aback by my joking manner of answering their questions. I do take it seriously of course, but honestly - I have had a whole week to think about how crappy I feel and how I will answer their routine questions! ;-)  I'm stuck at home for the most part, in my own cozy little jail, under the watchful eye of The Warden (my Mom is now known to my friends for being ever-so-sweetly protective of my rest time) even via phone! I can't go out of state or participate in any bad behaviour (did I mention I can't put any additional stress on my liver therefore noooooo drinking.........not even my beloved Fireball....), and I get a call once a week to verify my whereabouts!

I definitely do not regret the decision to join the trial, it is very interesting, it provides me with the best medical opportunities in the country, and it gives me the chance that I wouldn't otherwise have to get the drug that might help beat melanoma. I would encourage anyone given the choice to participate in a trial, whether it be for cancer or arthritis or MS or whatever else may be served our species, to ask lots of questions beforehand.  Find out everything you can about how it all works, what drugs you will be given and how, whether there would be a chance you would receive a placebo in a secret trial (the likes of one I flatly refused when asked).  I'm in week eight... only 59 to go.....

Oops gotta run - the phone is ringing! 

OK here we go...

Welcome to my new blog.  I have been thinking I need a hobby while trying to NOT go insane while dealing with my cancer diagnoses and being away from work and normal everyday Natalie Richardson life in Meaford Ontario.  So here I am, back to the keyboard, back to my nagging ambition to write (a book someday?) ... being productive and distracted while resting resting resting.... zzzzzzzzz

I will email this link to my countless friends, family, acquaintances and supporters so they can find these updates, but in the meantime I will post a couple of pics in case you have stumbled across me and aren't sure who I am. 

Some of you know me as:

Some as....

Some as only this.... :-)

And some more as just this:

(even though I don't work there any more but am currently 

"missing in action" at Bill's valu-mart)

I feel your support, and I appreciate your role in my journey, whatever that may be.  I had hoped this whole cancer thing would be over before we all even realised it was happening, but I got more news this week that counts as a bit of a setback.  Nonetheless we will overcome it... but I will blab about it along the way. Thanks for listening!

2nd Diagnosis

You may have noticed in my first post I mentioned the difficulty in coping with my cancer "diagnosEs" and I would like to clear that up.  On Wednesday I found out that a recent biopsy I had on my thyroid tests positive for "papillary thyroid cancer."  This was a bit of a shock.  In all the positive thinking we have all been doing since my diagnosis of melanoma in April, who would have thought that a second type of this disease would come for a visit? or so soon, at least?

The thyroid is positive for it as are surrounding lymph nodes.  It is not a melanoma, nor is it related, exactly, but apparently it has been seen in at least one other melanoma patient known to my oncologist, there is a link through some gene blah blah medical speak? I will elaborate on that when I get more information.

So... I am currently awaiting another consultation appointment with another surgeon at the Odette Cancer Centre at Sunnybrook Hospital in Toronto - have to have the thyroid gland and nearby nodes removed. Hoping to have this done ASAP of course but also hoping to have it done at a time that it fits with my treatment schedule in the clinical trial.  I have now had my third treatment, fourth is on Tues Oct 14, then not another til January.  I have no other way of receiving the drug I am currently getting, other than via the trial for my melanoma, so hoping thyroid surgery could be around the first of November so I have a good window with at least 8 weeks for recovery to stay on track with melanoma treatment. Don't know yet if there will be other treatment following thyroid surgery, ie. radiation/chemo.  

Good news (apparently) is that this thyroid cancer is relatively easily treated with surgery, and that the melanoma is still the worse threat that we have to worry about.  I am definitely not looking forward to having another surgery at the vastly intimidating Sunnybrook Hospital, but I am intensely grateful for the amazing care they are providing me. I am also grateful my family physician so strongly encouraged me to go with the Sunnybrook option when we first started dealing with all of this (I was seriously resisting arrest, not wanting to make so many pricey and time-consuming trips to the big city, being away from my family so much).  Now I see how it benefits me and I am happy to report that my team of medical professionals from here to Toronto work well together and definitely convey the sense that they care about me and my future.

This is the newest news at this point, and I will post when I have surgery date and/or more information. Maybe I can plug in a calendar gadgety thing on this blog as Claire suggested? Trying to remember how to use this blog stuff ;-)

The Pacman Effect

A lot of people have asked me or are trying to understand what type of treatment I am receiving for melanoma.  I should back up a bit and briefly talk about melanoma perhaps, but honestly I don't know a tonne about it, other than what Dr.s have told me or I have read in the brochures and booklets they have given me (I am banned from googling it).  Obviously it is a type of skin cancer, there are several types, and without going into all the details of the others I will just say mine started with a mole on my leg, and, I suppose... a life-long love affair with the sun. 

Feel free to check out The Melanoma Network of Canada website for more info.

Totally cliche story... had a mole on my leg, same spot all my life, last year it started to change colour and shape etc, all the stuff they warn you to have checked out, and I did not.  Long story short, I had it looked at in April, and removed, it tested positive for the deadly disease, as did surrounding lymph nodes (the little beady things that circulate our blood/fluids throughout our bodies), all resulting in a diagnosis of stage 3b Invasive Melanoma. Aggressive. Not the word you want to hear your OncologistS say. 

This is dangerous because it meant it had already spread from my skin to my internal stuff. Thankfully, CT scan showed that it had not spread to other organs - liver, lung, bone, and head being the main ones to watch out for.  I now have CT scans every three months, as, unfortunately those are the only way to check for the spread of melanoma - there is no blood test or other way to see if it is affecting other areas.

Fast forward - surgery in May removed more of the tissue surrounding the original mole site, plus a bunch of lymph nodes in the area (apparently we have extras we can afford to spare?), was on bedrest for eight weeks under the loving care of my family and friends and Mom a.k.a.The Warden, and then made the heavy decision to accept the invitation for a small clinical trial for a new-ish drug called Ipilimumab (pronounced ip-ee-LIM-u-mab - yes, I had to practice that).  This trial is North American, 50/50 chance, random draw, of receiving this drug as opposed to the current treatment for melanona: Interferon therapy. I got the Ipi - yay!  Note - there is no traditional chemotherapy for melanoma, it just does not respond.

Ipilimumab is currently the standard of treatment for stage 4 melanoma, and this trial is for lesser stages, as such my 3b qualifies. It is not a chemotherapy exactly, it is a "biological therapy." It is administered in the chemo unit at Sunnybrook, via 90-minute IV infusion.  I have a total of eight treatments, the first four are three weeks apart, and the second four are three months apart, resulting in approximately a year and a half of treatment.  I am approaching my fourth dose, and enjoying such side-effects as extreme fatigue, flu-like symptoms, irritability (the kids can testify), some tummy troubles, etc.  I feel I should not complain though, as I do not have to suffer the likes of extensive chemo side-effects, and I will be able to keep my hair. 

So this brings us to the Pacman theory: one of my nurses used an amusing analogy to explain to us what the biological therapy actually means.  She said to think of this drug as an army of "Pacmen" charging through and eating up the melanoma cells specifically.  So I spend much of my time mentally encouraging my inner Pacmen (all the while trying not to freak out at the thought of a bunch of little yellow circle men chomping at my insides LOL!), and we often verbally cheer on the Pacmen at home when I'm feeling crappy.  

This week when the girls sat by my side for my third treatment, Claire was inspired to draw this:  

I love it! Think we have the making of a cool logo for future awareness-raising!?