Wednesday 23 January 2013

Dear Abbey

One thing that has to be done before you even get to the room for your first radiation treatment is that you have to be scanned and marked.  I explain these marks as x marks the spot to my 5 year old son.  He knows the doctor isn't looking for gold, he does however feel more comfortable with the fact that they are there. 
 
 
The first time I had to go to the simulator for marking and scans was the day I got my diagnosis of stage IV metastatic Melanoma.  We were all in a haze and had no idea what we were doing or where we even were in the hospital.  This time it was my third trip there and I felt like an old hand at it.  Funny what a year as a cancer patient makes seem normal.
 
The one thing that I have managed to notice every time that I go to the simulator waiting room is that the number of men is much larger then that of the women, patient wise anyway.  I realise that radiation is used more with prostate cancer but I guess I never realised the volume of prostate cancer patients at my cancer clinic.  Today in that simulation scan waiting area I was able to put a face to one of these prostate cancer patients.
 
His name is Abbey.  My guess at his age is about 55.  Looks healthy, much like people tell me I do, but inside he has stage V prostate cancer (with a rating of 9.3 for those of you that know anything about prostate cancer). I had been telling another man about wanting to get glaxal base for after the treatment for the area of the skin exposed to the radiation when he came up on the waiting area.  A few minutes later I got up, because after being at the hospital sitting from 10am until now 1:30pm my butt needed a break. 
 
When I was looking at the postings on the tack board he came over and asked "what was that cream you were saying you should have to use after?"  I was hooked, I knew I had made a friend just because we were both in the same place at the same time, in similar circumstances.  Yes, we cancer patients make friends in strange ways I know, but now in the sea of faces I see every time I go to TBCC I will look for his.
 
So Abbey is new to the TBCC, but he has known something has been wrong for almost two years.  Two years of pain, urination issues, a urologist telling him that nothing is wrong (want to hit him with a shovel!), tests coming back normal, of wanting some one to listen to him instead of looking at the scientific facts.  Sometimes it is amazing how hard it is for a patient to be looked at for what they are, what they feel, and to get someone to really listen.  I hurt knowing that Abbey was one of these people.
 
"Nothings true and nothings right so let me be alone tonight"  if you can imagine a persons face saying that then you can see the expression I saw as Abbey was telling me his story.  He started having an issue went to get it taken care of.  He isn't a man afraid of a doctor, or to stubborn to go.  He knows how precious life is.  After suffering the loss of his own son and watching his father-in-law fight prostate cancer, he doesn't want to see his family suffer again so he tries to be proactive with his health.  In December of 2012 he started passing blood.
 
Any person sick with anything know peeing blood is a bad sign, but for him it meant they had to finally pay attention to what he had been saying all along.  He knew he was right about it being his prostate, but like anyone else we never really want to be right about what it is.  I remember feeling that way when I had to go in to get the results for my fine needle biopsy.  I knew it was going to say Melanoma when they called, I just didn't know it would be stage IV. 
 
I then shared my story with Abbey and his wife.  He was shocked I had Melanoma, and asked if I got it from tanning beds.  I explained my story a bit more and did some fact plugging about using tanning beds.  He was shocked and said he use to use them when he was younger, but he will be sure he tells people the possibilities of what can happen. 
 
I wish I could be there when he first goes into the room and sees this......
 
 
I wish I had of had someone like me to be there when I saw this machine the first time.  Don't get me wrong the radiation teams are great, and they tell you loads about what is going on and how things work.  It is just when someone who has been through it before it helps that much more to make you comfort able about what is happening.  We need a buddy system in the cancer clinics!  If we could do that I would take Abbey as my new buddy any day!!
 
 
I wished him all the luck in the world when I left and he was going into the simulator.  I told him about the treasure map, and he got a chuckle.  "At least it does lead them right to my jewels".  It is that attitude, that willingness to ask strangers questions, that knowing that he needs to make doctors listen to him that makes me know he is going to fight hard and long.  This part might not be easy or pretty or wanted, but he knows that it is necessary!
 
 
Abbey gave me a renewed boost of faith.  He showed me what I am sure I show people too.  This is not what all cancer patients look like, and it isn't what all of us want to be thought of as either.  We are people, with lives, families, stories, friends, faith, and reservations.  I am thankful to have met him and hope to see him on the other side of this fight. 
 
 
Oh and Mr Dr Urologist man that thinks that old school is the only way and doesn't want to use new tests and technology to diagnose patients, or even listen to them when they know something is more then just wrong.  Well I just want you to know that I have a shovel with your name on it!

 
 

Even Good News Comes with Baggage


So yesterday I had my first appointment with Dr Cheng since I finished my ipi (yervoy) injections.  I was very nervous about this appointment, to be honest I am not even sure if nervous can describe how I felt really.  The night before sleep was hard to come by, getting comfortable was over rated and eventually a children's chewable gravol was more then needed to get more then 30 mins un-interrupted sleep.  The morning came and daytime hours dragged just as long as the night times ones I couldn't sleep through.

We actually go to the appointment early, and the waiting began.  And waiting, and waiting, and waiting....  Then the nurse came and got us and we went into the clinic rooms that seem to make up the bowels of Tom Baker's Medical Daycare unit.  They are crammed in the space between the chemo rooms and the pharmacy that house all the liquid gold that we need to take to get better.

Then the typical process begins.  Weight, blood pressure, oxygen level, heart rate, ask about questions on my sheet that I made upon arriving, etc.  Then the nurse leaves and the waiting continues.  I want to hit waiting with a shovel FYI, but so is the life of a cancer patient wanting to see their oncologist to get the good, bad or ugly of the situation.  After what feels like hours we finally have Dr Cheng come in.

She is a woman that I cant easily read and I know that she has literally just gotten my PET Scan results so she is reading it as she stands there in front of me saying nothing.  She apologises and explains she is trying to figure it all out in human terms so that she can best explain everything.  I figure what is actually happening in her head is much like this, read in scientific English, translate to her Chinese mother tongue, translate to layman terms that we will all understand Chinese then English, then talk.  I feel for the poor woman I wouldn't want her job, EVER!

When she starts talking she is a bit all over the place still trying to get all her thoughts together.  Eventually I hear the words "there are no tumours on your breast, none in the axilla or lymph nodes there, none near the gallbladder, none near the kidney"!!  I wanted to jump out of my skin I was so excited.  I actually still do! 

There are others that are still there that look smaller then my last scan in September before I started my Ipi treatments.  There are ones they are just reporting about, but this is more because ones that we knew about before were ones that they used as markers.  (When this all started and I had my first scan I was told 'there are more then we could ever follow at once')  And then came the kicker!

Before Christmas I started having pain in my right shoulder.  We did an x-ray, there was no sign of anything.  I was told to exercise it and we would revisit it when I had my scan if was needed.  Oh well it was needed!!  It is a freaking 4cm mass in my shoulder trying to eat my bone!!  I wanted so badly for this to just be nerve inflammation and a side effect of the Ipi, but no it is the beast trying to get more bone!!

The worst part of all of this is I am so happy that there are 13 tumours GONE, that I want to be happy and feel amazing and relish in the fact that the drug is working.  I want to be focused on the fact that there is really hope here and a light at the end of this past year of hell.  I want 5mins of not worrying for the first time in what feels like an eternity, but I don't have that today sadly.

Today I have more pain in my right shoulder and arm then I have ever had.  I hate that since my mind now knows that it is cancer there that it is letting me feel more pain, or whatever it is doing.  I just want to take my arm off and hit it many, many times.  Beat the cancer right out of it, and then bury the bastard in the back yard.  I have this lingering in my mind no matter how happy I am to share good news or type messages spreading the news, even venting in this blog I still feel the pain and want to scream.  I want to have pushed for the MRI in Dec.  To have all this dealt with before the pain got this bad that I need narcotic to function.

Monday the beast will be angry.  I will be tired.  The radiology floor will have me as a fixture for a week. Then there will be other things to hit with a shovel and this will be nothing but a memory I hope.  Until then Melanoma can take a shovel to the face and be ready for the gravedigger!!

Tan Lines

Warning:  It has taken me some time to compose this blog.  When I was away in NB over Christmas I received word that Jillian had passed away.  Since then I have listened to the podcast of her service, cried many tears for a young woman I feel was robbed of her life and mourned not only for her but myself in the process.  I was worried that I would not be brave enough to finish this entry, but with the help of reading her brother's new blog and with the good news I got yesterday (another blog will follow about that) and some coaching from my counsellor, I have persevered.  This was not easy and it isn't pretty so read with care and remember there is nothing about Melanoma that is nice so sometimes I find it hard to say nice words about it!

I am more then willing to admit that before I developed Melanoma I thought that tan lines were a normal by-product of summer life.  They weren't something that I strived for, nor were they something that I worried about getting.  They just were, and were largely on my feet (PS: I love flip flops).

Now when I think of tan lines I see something like this in my head......


 

This tanned skin is a beautiful golden brown.  Has been slathered in olive oil.  Baked at a perfect temperature for the perfect amount of time.  The only difference between this delicious looking chicken and the image that follows, is that I just want to rip the skin off of and eat and lick my fingers!  What I can no longer figure out is why are people cooking themselves?


 
 
All I can think is that this poor girl is going to hurt when the sun goes down for the day.  Oh and that she is a total idiot for letting this happen to herself!!  Does she know what she is doing to her body?  Was this an accident?  Was this on purpose?  What idiot does this to themselves on purpose?
 
I have had friends since I had stage 0 Melanoma removed in 2008 go to the beach with me and get a burn.  I have gotten a strange burn myself since that removal on my thigh where I obviously just missed with sunscreen.  The thing is I was conscious of what happened and I made sure everyday after that burn that I did not burn again.  Well that was until I took Zelboraf, but I will leave those side effects for another shovel on another day.
 
 
 
 
 
"What good are they if you don't show them off?"  The better question is what good are they if I get cancer?  What good are they if I spent all this time wanting to be browner, tanner, healthier looking, slimmer, etc. and the damn sun just gave me one of the deadliest cancers there is because I was the f#cking dipshit that thought using sunscreen wasn't necessary?  Do the women in this picture even realise that the colour of their bare ass is their natural skin colour?  Do they even care what they have done to their bodies?  Do they want to end up like so many young people have in recent years, 6 feet under because they wanted a tan?
 
 

 
 
So it seems that some women wear and want tan lines as a badge of honour.  Others hate the fact that they could have them and then try to hide them, correct them, avoid them at all costs.  There are some people that even go as far as laying in tanning bed naked without protective goggles so they have 0 tan lines!  They are all "yolo"ing their lives away to vanity.  I mean we can all be vane, but to me it takes a special person to reach that level of vanity.  It is also my guess that they are the ones that have the self esteem of a newt, because they let society and Coco's tan back at Cannes all those years ago tell them what beautiful is.
 
Now I realise that not all of us are perfect and that for the most part all of us have been ignorant about the sun, sun damage, sun burns, tans, tanning beds, etc., and I don't want to come across as being superior about all of this.  I know there are tan-orexics that have come around and become defenders of the pale, some having suffered, some just having been scared, and regardless how you got here I am glad that you have.  The more people we have out there that aren't afraid to stand up and say that this is wrong, hopefully the more people we can help to love their skin as it is and decrease the number of people fighting against Melanoma for their lives...  These next three images are of 3 women that make me proud to have pale skin.  One is a surviour with a voice for us like no other, one is fighting for her life with me and one is a former tan-orexic that I am very glad was scared straight.
 
Chelsea

Jillian

Lindsay
 
I am sad to report that Jillian is no longer with us.  She lost her valiant battle to this horrible disease before she ever got to live the life she wanted for herself.  Her family has lost an amazing daughter, sister and friend, but for their loss Heaven has gained an angel like no other and for those of us fighting we just have another angel on our shoulders whispering for us to never give up!
 
I remember the day that I realised how fragile Jillian's life was and that she herself saw that too.  Her mother made a facebook post about something that Jillian said, in that moment my heart ached for a person that was no more then a picture for me.  I cant remember the exact words, but they were saying that her want for a tan, going to tanning beds, spending hours out in the sun was what was killing her!
 
Jillian was 23 years old when she passed.  Where were you are 23?  Where do you want to be at 23?  Does a person even fully know who they are at 23?  Can you really say you have lived your life if it is taken from you are 23?  I have a hard time answering these questions, as they are ones I have been asking myself every moment since I was diagnosed just with the number 32 there instead of 23. 
 
I look back at high school and think of all the girls that looked like they were extras in Willy Wonka. 
 
 
I mean really who looks better in this picture?  I know girls that didn't look like Willy that is for sure.  Some of them have gone on to have jobs in the medical field, many are nurses and I wonder if they realise yet what they have done to their bodies!  I know that Jillian knew what she had done.  I know what she would tell all of those people out there that are still trying to look like the have lived in the tropics their entire lives.  My guess is that I cant say it as nicely as she or Chelsea would, being blunt gets the best of me and I know it.
 
 
In general we all still have the same message, DON'T WASTE YOUR LIFE!!  Learn from those that have made mistakes before you.  Take up the fight for those that have been lost.  Educate yourself, your family, your friends, about what Melanoma is because believe me it is way more then JUST SKIN CANCER!!  Stand up to the tanning industry.  Make our governments make changes to protect future generations.  Protest in your own way to make a difference.  Ask strangers if they have had 'that mole' looked at.  Harass the people that put all the images out there that show tan as being good and the norm.  Give yourself a voice with a cause and run wild with it!!
 
 
FUTANLINES!!