My Shovel List
This is a list of things I wish to hit with a shovel and bury in my backyard. These are people or things in my life with Stage IV Metastatic Melanoma that I could live without. Well maybe not completely live without, but at the very least they are things that I wish would go away for awhile.
Monday 15 April 2013
"when the world gets in your way, whats the point of all this screaming, noone's listeing anyway"
While I was home over Christmas I was introduced to Slacker Radio. On nights like this when I can't yet find sleep and need something to get the creative juices flowing it is where I turn. As I sit here and listen to the Counting Crows station almost every song invokes an emotion and an idea in me so I am not sure this session on the shovel list will be very cohesive. I hope that you can follow and keep up.
"the first cut is the deepest"
I wonder how true this is for those the are battling any and all types of cancer? Do they always go as deep as they need to the first time they go in and try to remove the cancer that we have? If when I had my stage 0 Melanoma removed if I had of asked them to go deeper and wider then they did could that have prevented what has played out over the last year?
Don't you love how one question leads to a million and that some days there are no answers to any of them that make any sense. We cannot change what has happened and we have to keep going forward. I understand and accept that for the most part, but there are days that I would just like an answer to one of the million question I have about my cancer and all the others out there that I wish I could get a straight answer on.... Ya know what I mean?
"I found God at the corner of 1st and Namaste"
I have faith. This doesn't mean that I belong to a church. I doesn't mean that I am a 'Bible Thumper'. It definitely doesn't mean that typical conformed religion works for me any more. I believe I have seen God. He is in the face of my children, my best friends, my mother. He is there to help me carry my cross and I am thankful for that. Some days I want Him to take that cross and shove it, but we didn't do that for Him and I know He can't do that for us.
"I guess winter makes you talk a little lower about the things you couldn't show her"
What I find the hardest about being sick with this thing is how to talk about it to people. Talking to other people that have it is easy. We compare drugs, scans, results, fears, etc. Talking to my closest friends and family is so hard. I want to spare them from all of this. I don't want to tell them when I hurt, when I am scare, when I need help, when all I want to do is sleep so that I don't have to think about being sick. The hardest thing is trying to explain things to my kids and my Mum. No parent should lose a child, and no child should lose a parent before they are grown.
"Jeremy spoke in class today"
It is a goal of mine that I someday I will speak publicly about Melanoma. I want to go into classrooms and share my story. I want to help prevent there being others like myself. People can prevent this cancer to a certain extent and they need to see what it does to a person that has it, I think, before they will be willing to open their eyes and really see that. I don't want to have to scare them, or fight with them, or have them laugh it off when the talk has to get heavy. I just want them to see that it is real, it doesn't discriminate because of sex, age, tax bracket, or skin tone. Melanoma is ugly. Melanoma is mean. Melanoma is a bully. I feel like I am Jeremy and Melanoma is my bully.
"words of rage I cannot hide"
Music is what my shovel is made of tonight. Music can bring out emotions and feelings that you have buried for some reason. Music in any form can be calming. Listen to a song and see what it brings up for you.
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?
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!!
Wednesday 12 December 2012
The half listeners.....
Now I realise that this image could have many meanings when it comes down to it, but it fits what I have been trying to put into words for a few days. You see when it comes to people there are a certain group out there that I would like to refer to as 'the half listeners' that drive me absolutely nuts! So this shovel is for them.....
I understand that all people show concern for a loved one, friend, frienemy, acquaintance, family member, etc differently. Some people have no idea how to deal so they distance themselves. There are others that you suddenly hear from that you haven't been in contact with for years. Then of course there are the people that have always been there for you and always will be no matter what is happening in their life or yours.
Those that I wish to hit with the shovel can fall into any of these categories. It isn't that they are being fake, or at least I hope that isn't the case. What frustrates me the most about the ones I have in my life right now are that they are people very close to me that like to talk. Some, I would even say, are gossips. That doesn't make me love/like/care for them any less. What drives me so mad about this is that they are telling people things about me that aren't complete; they are spreading half truths which to me might as well be a lie!
If I tell you that I am going to have 4 injections of ipi each one being 3 weeks apart how hard is that to understand? How many times do you have to keep asking me about when I am done? Can you not count? Is what is happening to me not important enough for you to pay attention to the answers I give you after you ask the questions?
I know that I have to repeat information about my life to many people over and over again. The hardest part for most to wrap their heads around is what the treatments do and how it is that the drugs work on Melanoma. That doesn't mean that if you are a person that I talk to on a regular basis that I want to answer the same 5 questions all the time!
No surgery is not an option, and may never be! I am not planning on going back to work anytime soon, it isn't something high on my priority list to think about right now so stop asking! Yes I am done my current treatment, this doesn't mean I am done all treatments it is just a break until we have a scan and see what has happened! They haven't told me how much time I have, all I know is I have time so I want to use it the best I can! I had a steal rod put in my right femur, this doesn't make me a cripple it makes me bionic!!
The thing that annoys me the most is if they have to ask these same questions over and over again then what have they told the people they talk to? How many people that are their friends think I am on deaths door with no other treatment options? That I am incapacitated with 2 young children because I had to have surgery on my leg and that now that I am alone for a few days since my mother has already flown to NB I will be helpless without her? How many of these people are then seeing other people I know and then asking them if it is true? Oh wait I know this happens because I get phone calls, emails, text messages, facebook messages asking me if these things are true so I do know it is happening. And guess what? I want it to stop!!!
These half listeners are going to make me stop telling them things just to save my own sanity!! It also makes me wonder if they have always been like this or if it just their way of coping with all of this or if for some it is just an age thing? All I know for sure is that it is infuriating to have people ask me questions about my health and well being and then not care to listen to the answers!! How bloody hard is it to actively listen to what you are being told?
It is obviously really hard for some people or I wouldn't be wanting to hit and bury them with my shovel!! I know what I am telling them is important and the facts as I know them. I know that is what they have asked about and that is why I am telling them the information. I know that a lot of it is over the common persons head as it is over my head until I look it up or ask follow up questions. I also know without a doubt that if the half listeners don't soon get their shit together and actually LISTEN to what they are being told then I am going to stop answering their questions because it is just futile.
I may not be responsible for you to understand what I have said but I do deserve the respect of you to listen to the answers you have asked for!!! If you can understand that then maybe you best think before you ask another question for the millionth time and still don't have the courtesy to listen to the answer! I want for it to be known that I am going to start asking if you listened the first 50 times before I decided whether or not you deserve to hear it again, because this is getting ridiculous. Not to mention a waste of my time and breath!!
I understand that all people show concern for a loved one, friend, frienemy, acquaintance, family member, etc differently. Some people have no idea how to deal so they distance themselves. There are others that you suddenly hear from that you haven't been in contact with for years. Then of course there are the people that have always been there for you and always will be no matter what is happening in their life or yours.
Those that I wish to hit with the shovel can fall into any of these categories. It isn't that they are being fake, or at least I hope that isn't the case. What frustrates me the most about the ones I have in my life right now are that they are people very close to me that like to talk. Some, I would even say, are gossips. That doesn't make me love/like/care for them any less. What drives me so mad about this is that they are telling people things about me that aren't complete; they are spreading half truths which to me might as well be a lie!
If I tell you that I am going to have 4 injections of ipi each one being 3 weeks apart how hard is that to understand? How many times do you have to keep asking me about when I am done? Can you not count? Is what is happening to me not important enough for you to pay attention to the answers I give you after you ask the questions?
I know that I have to repeat information about my life to many people over and over again. The hardest part for most to wrap their heads around is what the treatments do and how it is that the drugs work on Melanoma. That doesn't mean that if you are a person that I talk to on a regular basis that I want to answer the same 5 questions all the time!
No surgery is not an option, and may never be! I am not planning on going back to work anytime soon, it isn't something high on my priority list to think about right now so stop asking! Yes I am done my current treatment, this doesn't mean I am done all treatments it is just a break until we have a scan and see what has happened! They haven't told me how much time I have, all I know is I have time so I want to use it the best I can! I had a steal rod put in my right femur, this doesn't make me a cripple it makes me bionic!!
The thing that annoys me the most is if they have to ask these same questions over and over again then what have they told the people they talk to? How many people that are their friends think I am on deaths door with no other treatment options? That I am incapacitated with 2 young children because I had to have surgery on my leg and that now that I am alone for a few days since my mother has already flown to NB I will be helpless without her? How many of these people are then seeing other people I know and then asking them if it is true? Oh wait I know this happens because I get phone calls, emails, text messages, facebook messages asking me if these things are true so I do know it is happening. And guess what? I want it to stop!!!
These half listeners are going to make me stop telling them things just to save my own sanity!! It also makes me wonder if they have always been like this or if it just their way of coping with all of this or if for some it is just an age thing? All I know for sure is that it is infuriating to have people ask me questions about my health and well being and then not care to listen to the answers!! How bloody hard is it to actively listen to what you are being told?
It is obviously really hard for some people or I wouldn't be wanting to hit and bury them with my shovel!! I know what I am telling them is important and the facts as I know them. I know that is what they have asked about and that is why I am telling them the information. I know that a lot of it is over the common persons head as it is over my head until I look it up or ask follow up questions. I also know without a doubt that if the half listeners don't soon get their shit together and actually LISTEN to what they are being told then I am going to stop answering their questions because it is just futile.
I may not be responsible for you to understand what I have said but I do deserve the respect of you to listen to the answers you have asked for!!! If you can understand that then maybe you best think before you ask another question for the millionth time and still don't have the courtesy to listen to the answer! I want for it to be known that I am going to start asking if you listened the first 50 times before I decided whether or not you deserve to hear it again, because this is getting ridiculous. Not to mention a waste of my time and breath!!
Sunday 9 December 2012
Drug Companies
Hmmm.... the thing with drug companies is that they are a double edged sword. Without them I wouldn't have the drugs that I need to take to beat this horrible thing that I have inside me (I would say disease or cancer, but they are other things I want to hit with a shovel and will save for another post another day). They are the place where people work to create medicine to save lives. They are also the place where I think greed is, well I will let you draw your own conclusions.
So far in my Melanoma Journey I have taken 2 cancer drugs. Neither of these drugs are free really, as Alberta is not a province that picks up the tab for them like some others in Canada now do. I was lucky that my private insurance covered 85% of the first drug and that the remainder of the bill was eaten up by the drug company itself. For 3 boxes of the pills the total cost on the bill was just over $9000.
Those wonderful little pills gave me more then just medicine. They gave me hope. They may have came with side effects that made me itch to the high heaven, caused hair loss to the point that I shaved my head so that I didn't have to deal with the amount that was falling out on a daily basis, but like a said they also gave me hope. Zelboraf was my first line treatment, my life line and when all else fails it is something I can come back to for that hope again.
While taking them I never thought of the cost of them. Not once did it cross my mind how I would pay for them if my insurance didn't eat up as much as it did of the big price tag. I was just thankful that they kept arriving at my door and that I was able to take them. That they were giving me time that I might not otherwise have.
When this medication ran it's course and I had to start a different drug that I started to see the dollar signs and do the math. You see this second treatment I get to take as a 90min infusion every 3 weeks for 4 infusions. I did not have to pay for this drug either as a qualified for compassionate use. Thankfully the drug companies see that this is a drug that is necessary for possibly extending the lives of the people that need it, so they pick up the full amount. You my want to sit down before I tell you what 90ml of this wonderful little treat is.
Are you ready? I am not sure that you are. I was told by one of the persons in charge of the Medical DayCare Unit as the TBCC where I receive my infusions that it is one of, if not the most, expensive drug that the hospital has. So here it is 90ml = $35,000. I kid you not! For what each infusion costs I could be buying a high end car. If is saved up the cost of each infusion I could have half of a townhouse paid off. For the cost of one infusion I could cross off the most important item off of my Bucket List without a worry.
So here is where the drug companies gain their spot on My Shovel List. Now don't get me wrong I am very thankful that they cover the cost of the drugs that I have had to take over these last 7 1/2 months. But think of what life must be like for those that need drugs like the ones I have taken and the cost is not covered? Why does a drug need to cost $35,000 for 90ml? Why do 135 tablets have to cost over $9000?
In North America there is a person diagnosed with Melanoma every 65mins, approximately. Each of us diagnosed has the chance of getting to the point of needing these drugs and I sadly don't think that the drug companies are going to continue to be as generous with all the possible medications that a stage IV patient may need. How can anyone that goes into a profession to help save lives put such a huge price tag on a life? How can they do that with good conscience? How can making money be more important then saving a life? This is why I want to hit them with a shovel and bury them in my backyard!!
So drug companies I have an idea that can save you from being buried in my backyard, and it isn't even asking you to make the drugs for free. Tanning Salons in the US are a 5 billion dollar a year industry. It is a know fact that they are part of the reason why Melanoma is on the rise with youth, especially with females 15-30.
How about this? How about the governments get their act together and tell the salon companies, and the bed and the light manufactures that they have to pay the drug companies that make the drugs that we need to extend our lives. Doesn't that make sense to you? I mean tobacco companies have to do something like that don't they? So why not make tanning do the same? Make them foot the bill for the epidemic that they are feeding? Drug companies should be lobbying the governments to make this happen and they shouldn't be wasting a minute in doing so!
So far in my Melanoma Journey I have taken 2 cancer drugs. Neither of these drugs are free really, as Alberta is not a province that picks up the tab for them like some others in Canada now do. I was lucky that my private insurance covered 85% of the first drug and that the remainder of the bill was eaten up by the drug company itself. For 3 boxes of the pills the total cost on the bill was just over $9000.
Those wonderful little pills gave me more then just medicine. They gave me hope. They may have came with side effects that made me itch to the high heaven, caused hair loss to the point that I shaved my head so that I didn't have to deal with the amount that was falling out on a daily basis, but like a said they also gave me hope. Zelboraf was my first line treatment, my life line and when all else fails it is something I can come back to for that hope again.
While taking them I never thought of the cost of them. Not once did it cross my mind how I would pay for them if my insurance didn't eat up as much as it did of the big price tag. I was just thankful that they kept arriving at my door and that I was able to take them. That they were giving me time that I might not otherwise have.
When this medication ran it's course and I had to start a different drug that I started to see the dollar signs and do the math. You see this second treatment I get to take as a 90min infusion every 3 weeks for 4 infusions. I did not have to pay for this drug either as a qualified for compassionate use. Thankfully the drug companies see that this is a drug that is necessary for possibly extending the lives of the people that need it, so they pick up the full amount. You my want to sit down before I tell you what 90ml of this wonderful little treat is.
Are you ready? I am not sure that you are. I was told by one of the persons in charge of the Medical DayCare Unit as the TBCC where I receive my infusions that it is one of, if not the most, expensive drug that the hospital has. So here it is 90ml = $35,000. I kid you not! For what each infusion costs I could be buying a high end car. If is saved up the cost of each infusion I could have half of a townhouse paid off. For the cost of one infusion I could cross off the most important item off of my Bucket List without a worry.
So here is where the drug companies gain their spot on My Shovel List. Now don't get me wrong I am very thankful that they cover the cost of the drugs that I have had to take over these last 7 1/2 months. But think of what life must be like for those that need drugs like the ones I have taken and the cost is not covered? Why does a drug need to cost $35,000 for 90ml? Why do 135 tablets have to cost over $9000?
In North America there is a person diagnosed with Melanoma every 65mins, approximately. Each of us diagnosed has the chance of getting to the point of needing these drugs and I sadly don't think that the drug companies are going to continue to be as generous with all the possible medications that a stage IV patient may need. How can anyone that goes into a profession to help save lives put such a huge price tag on a life? How can they do that with good conscience? How can making money be more important then saving a life? This is why I want to hit them with a shovel and bury them in my backyard!!
So drug companies I have an idea that can save you from being buried in my backyard, and it isn't even asking you to make the drugs for free. Tanning Salons in the US are a 5 billion dollar a year industry. It is a know fact that they are part of the reason why Melanoma is on the rise with youth, especially with females 15-30.
How about this? How about the governments get their act together and tell the salon companies, and the bed and the light manufactures that they have to pay the drug companies that make the drugs that we need to extend our lives. Doesn't that make sense to you? I mean tobacco companies have to do something like that don't they? So why not make tanning do the same? Make them foot the bill for the epidemic that they are feeding? Drug companies should be lobbying the governments to make this happen and they shouldn't be wasting a minute in doing so!
Saturday 8 December 2012
The Conseption.... this one isn't so immuculate
In the spring of 2008 I had my first brush with melanoma. A brush that left me with a battle scar on my left collar bone. A brush that taught me to be sun smarter then I was. A brush that changed my life forever.....
I guess this brush is what began my wanting of this outlet that I didn't think I could actually put on there, keys to fingers, words to screen, and strangers reading. Well at least not until I started reading Marian Keyes latest novel of the Walsh Family sisters, The Mystery of Mercy Close. In this book she is writing about Helen and her adventures as a struggling PI in recession hit Ireland. Helen is the youngest Walsh and probably the quirkiest of the 5 Walsh Girls, not always my favourite character in the previous books but that changed when I read this on the back cover. "I employ this thing called the Shovel List." "A shovel ......?" "No. A Shovel List. It's more of a conceptual thing. It's a list of all the people and things I hate so much that I want to hit them in the face with a shovel."
From this perfect description the only thing I add is then burying said person or thing in the backyard. I take this idea from one of my oldest friends, Cassie. You see she and her husband my have only been married for the last 10 years, but they have been a couple since 1995. They are that couple that has come to the realisation that no relationship is perfect and that agreeing to disagree saves marriages. However, that doesn't stop her from occasionally wanting to 'bury him in the backyard' when he gets to that point of over bearing assholeness that most men can.
I will admit that I may have needed this Shovel List before I met Melanoma. I am a person of opinions, some that get me in trouble. I am that person that just can't keep their mouth shut, which also gets me in trouble. The one thing I can say for sure though is that Melanoma has made me even more of that person with an opinion that just can't keep their mouth shut. So I am hoping that this Shovel List will keep me out of trouble; well at least a little bit any way.
This is my outlet for dealing with Stage IV Metastatic Melanoma. This is My Shovel List. This is my Life. I hope that it helps everyone reading just as much as it helps me to get out there those things that life and this horrible disease make me want to hit with a shovel and bury them in the backyard!
I guess this brush is what began my wanting of this outlet that I didn't think I could actually put on there, keys to fingers, words to screen, and strangers reading. Well at least not until I started reading Marian Keyes latest novel of the Walsh Family sisters, The Mystery of Mercy Close. In this book she is writing about Helen and her adventures as a struggling PI in recession hit Ireland. Helen is the youngest Walsh and probably the quirkiest of the 5 Walsh Girls, not always my favourite character in the previous books but that changed when I read this on the back cover. "I employ this thing called the Shovel List." "A shovel ......?" "No. A Shovel List. It's more of a conceptual thing. It's a list of all the people and things I hate so much that I want to hit them in the face with a shovel."
From this perfect description the only thing I add is then burying said person or thing in the backyard. I take this idea from one of my oldest friends, Cassie. You see she and her husband my have only been married for the last 10 years, but they have been a couple since 1995. They are that couple that has come to the realisation that no relationship is perfect and that agreeing to disagree saves marriages. However, that doesn't stop her from occasionally wanting to 'bury him in the backyard' when he gets to that point of over bearing assholeness that most men can.
I will admit that I may have needed this Shovel List before I met Melanoma. I am a person of opinions, some that get me in trouble. I am that person that just can't keep their mouth shut, which also gets me in trouble. The one thing I can say for sure though is that Melanoma has made me even more of that person with an opinion that just can't keep their mouth shut. So I am hoping that this Shovel List will keep me out of trouble; well at least a little bit any way.
This is my outlet for dealing with Stage IV Metastatic Melanoma. This is My Shovel List. This is my Life. I hope that it helps everyone reading just as much as it helps me to get out there those things that life and this horrible disease make me want to hit with a shovel and bury them in the backyard!
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