Tuesday was the day - I left my home office at 12 noon as a devout type A personality arriving late would have been bad form, I am escorted to the patient registration area where I am introduced to my Patient Financial Specialist - wow - say what? Yes at MD Anderson you have your own Patient Financial Specialist who is there to assist you with navigating the financial complexities of Cancer - this cracks me up because for months I have lamented that I needed my own assistant to keep up with the billing and the appointments - bam there she was at MD Anderson who knew. Once I had completed all of the paperwork a volunteer took me out a tour of the facilities - showed me were the essential items I would need for my day in the facility and then escorted me up to the waiting room for my appointment. 15 minutes later I was taken back to be weighed, measured and vitals taken - no surprise in all of this my once statuesque frame had was now 1.5 inches shorter, evidence of the weight I have been carrying for the past year. I filled out a comprehensive history of all I had been through, meet with a nurse who reviewed it and then the fabulous Jade Homsi came in to chat. We spent about 30 minutes discussing the past 10 months and all that had gone on - he quietly listening to my story - interspersed with commentary on my treatment. I completed the verbal history and he gave me a brief history of his practice - for that past 9 years he has treated nothing but melanoma - day in and day out that is all he treats. He then went on to tell me that I was not a candidate for Interferon - my mind seized - what did he just say to me ...did I hear that right?? Yes I had heard it right he would not have suggested that I take interferon - but wait I was told my miotic rate was very high - yes he said it was very high but that does not make you a candidate for Interferon. I told him that I was told the cancer was microscopic and that if I didn't do the Interferon it was going to come back - again he stated that I was not a candidate for Interferon - I will be frank it is good thing that I have an excellent memory - when not Restoril - because I remember him saying to me that he was 98% certain that it was never coming back - WAIT - STOP the bus - did he just say that it wasn't coming back - for the past 10 months I have been poisoned, cut and scanned because the cancer was coming back - did he know that I didn't float down the Salt River on my 9 month NED or drive with my convertible top down or walk the lake before 600a because I was afraid that this would bring it back? Did this amazing human know what a blessing these words were to me to finally hear that I can get back to living my life - while more protected for sure but living again?
I won't lie - bits and pieces of all that he said to me in that examination room are coming back to me now that the shock has worn off and I have moved through the anger of my circumstance. I can tell you I stand a little taller now - my heart is not so heavy, the fear is gone and in the middle of the day I put the top down on my convertible.
People have asked me what I am going to do with this information - and after 48 hours of reflection here is what I have.
1. I would like an apology from this Doctor - to sit at a conference room table across from this man and have him tell me that he made a mistake, that he is sorry and that he learned something from this all - it is highly doubtful that this will ever happen but a girl can dream. Instead I will file a complaint with the Arizona Medical Board so that if this ever happens again - because lets face I am not sure that this wasn't intentional - someone will know what he did to me.
2. I have mad fundraising skills - they have sat dormant in the spare closet - time to dust them off and see what I can do to benefit MD Anderson and the patients who are much less fortunate than I. Does anyone else think that it is weird that Phoenix is the 5th largest city in this country and we do not have a 5k or a 10k to raise money and awareness of Melanoma?? We have over 150 golf courses - why isn't there a tournament to raise funds? And what about a Gala where we put on our fashion finery and dance about in the name of Melanoma?
3. One of the things that I found alarming is that my treatment plan is not customary however BCBS never even looked at the treatment plan - there was no pre-authorization or review of what could have been $250,000 just for the Interferon not including the after effects. I think that has to change - in the course of 10 months I had a PET scan, 3 MRI, 3 regular Mamograms, 2 3d Mamograms and 2 thyroid glands - the month of January they paid out over $25,000 for Treatment, scans and a PIC line. It boggles my mind that none in all of this said hey this isn't right and my question is why.
4. I need to get back to living life - having fun and not fearing the melanoma - enough with the fear and the living life as a hermit - it is time to seize the day!!
Thursday, October 30, 2014
Sunday, October 26, 2014
8 things that melanoma has taught me.
As I rolled through my 1 year anniversary of the delivery of the 3 words that changed my life - You Have Melanoma - I think sharing what I have learned from this would be fitting.
1. I have learned to be alone and to appreciate the company - to know who I am to love me with all of my faults and to realize that the only opinion that matters is mine because each day I get up I have to look mysefl in the face and know that the choices I have made are mine - not influenced by emotional blackmail or medical manipulation.
2. What you put in your mouth is the most important and profound choice you can make each and every day, that these choices you make today will have repercussions in the future.
3. Your circle of friends and family in your life will change - there is this ideology out there that speaking about the disease can lead to you getting it and people can be downright nasty to avoid the conversation. At some point after relegating yourself to a quiet hidden life because your hair loss and dark circles are too uncomfortable for them to handle - you realize that these people and their actions are toxic to your recovery and you walk away.
4. You will begin to realize the beauty around you - recently I traveled to California to escape and recenter, I opted to stay in Long Beach which is one of the most active and largest ports in this country. What struck me about this stay was the amazing container ships that flow into this country, loaded with thousands of containers - stacked 10 high and 30 across these quiet giants of industry were amazingly beautiful to watch as they danced in and out of port - carrying goods that define our lives. My favorites are sunrise and sunset - it amazing to watch God's handy work as he painted the sky with amazing colors.
5. My uncle used to tell me that a doctors profession is a practice and they are practicing on you - it is ironic something that I was told as a child that had prophetic irony for me in the past year. I am rounding out the year with my 3rd doctor after the Top Oncologist I hired sold me out for his BMW payment by selling me a prolific poison that devastated my system for 8 months. I won't know if the 16 days that I took Interferon at the cost of $2300 will have any significant impact on my life expectancy but I can tell you that it cost me 10 months of my life as I dealt with the impact - 6 nodules on my thyroid, enlarged uterus, swollen lymph nodes that made it painful to move my head, hair loss - twice, weight gain and depression. I became his guinea pig as he ignored my request that no addictive drugs be used in my treatment were ignored and when I presented with symptoms of addiction his response was to double the dose of this drug. I learned that I can't trust anyone but myself to treat this disease and that if it does not feel right it isn't right.
6. Exercise is paramount to your recovery - whether it is yoga practiced long and slow to a walk around the lake to a bike ride in the country - put on your UPF 100 hat and your 70 SPF sunscreen and get outside move and enjoy life.
7. Explore alternate therapies - read - learn and try new things to see how your body reacts - do what feels good to you and know that this will take time. I started getting massages every 2 weeks - my favorite is the Lomi Lomi the draw back is that the next day I feel like I have been hit by a dump truck but this is actually beneficial in shaking loose the residual interferon and the aftereffect is from my body reprocessing this chemical.
8. No one can tell you why you got this disease - there are the risk factors that they say defines who gets skin cancer the funny thing is that melanoma is a cancer that manifests predominately on the skin but that there are many who feel that labeling melanoma as skin cancer is incorrect. This is cancer, it arrives without invitation and entangles every fiber of your life - understanding what you did that allowed this parasite into your life is complex and confusing path. Above all know that the world we live in today has a better understanding of toxins and their impact - so all you can do is choose better today.
As this year comes to a close and I move on with living - these are the things that melanoma has taught me, what melanoma has revealed to me and how no matter how resist it - how melanoma has redefined me.
1. I have learned to be alone and to appreciate the company - to know who I am to love me with all of my faults and to realize that the only opinion that matters is mine because each day I get up I have to look mysefl in the face and know that the choices I have made are mine - not influenced by emotional blackmail or medical manipulation.
2. What you put in your mouth is the most important and profound choice you can make each and every day, that these choices you make today will have repercussions in the future.
3. Your circle of friends and family in your life will change - there is this ideology out there that speaking about the disease can lead to you getting it and people can be downright nasty to avoid the conversation. At some point after relegating yourself to a quiet hidden life because your hair loss and dark circles are too uncomfortable for them to handle - you realize that these people and their actions are toxic to your recovery and you walk away.
4. You will begin to realize the beauty around you - recently I traveled to California to escape and recenter, I opted to stay in Long Beach which is one of the most active and largest ports in this country. What struck me about this stay was the amazing container ships that flow into this country, loaded with thousands of containers - stacked 10 high and 30 across these quiet giants of industry were amazingly beautiful to watch as they danced in and out of port - carrying goods that define our lives. My favorites are sunrise and sunset - it amazing to watch God's handy work as he painted the sky with amazing colors.
5. My uncle used to tell me that a doctors profession is a practice and they are practicing on you - it is ironic something that I was told as a child that had prophetic irony for me in the past year. I am rounding out the year with my 3rd doctor after the Top Oncologist I hired sold me out for his BMW payment by selling me a prolific poison that devastated my system for 8 months. I won't know if the 16 days that I took Interferon at the cost of $2300 will have any significant impact on my life expectancy but I can tell you that it cost me 10 months of my life as I dealt with the impact - 6 nodules on my thyroid, enlarged uterus, swollen lymph nodes that made it painful to move my head, hair loss - twice, weight gain and depression. I became his guinea pig as he ignored my request that no addictive drugs be used in my treatment were ignored and when I presented with symptoms of addiction his response was to double the dose of this drug. I learned that I can't trust anyone but myself to treat this disease and that if it does not feel right it isn't right.
6. Exercise is paramount to your recovery - whether it is yoga practiced long and slow to a walk around the lake to a bike ride in the country - put on your UPF 100 hat and your 70 SPF sunscreen and get outside move and enjoy life.
7. Explore alternate therapies - read - learn and try new things to see how your body reacts - do what feels good to you and know that this will take time. I started getting massages every 2 weeks - my favorite is the Lomi Lomi the draw back is that the next day I feel like I have been hit by a dump truck but this is actually beneficial in shaking loose the residual interferon and the aftereffect is from my body reprocessing this chemical.
8. No one can tell you why you got this disease - there are the risk factors that they say defines who gets skin cancer the funny thing is that melanoma is a cancer that manifests predominately on the skin but that there are many who feel that labeling melanoma as skin cancer is incorrect. This is cancer, it arrives without invitation and entangles every fiber of your life - understanding what you did that allowed this parasite into your life is complex and confusing path. Above all know that the world we live in today has a better understanding of toxins and their impact - so all you can do is choose better today.
As this year comes to a close and I move on with living - these are the things that melanoma has taught me, what melanoma has revealed to me and how no matter how resist it - how melanoma has redefined me.
Sunday, October 12, 2014
September
September was a game changer for me in so many ways - in the past 11 months I had noticed that I was having a hard time putting words together - I had suffered through this as everything else as a side effect of Interferon. Until I watched a piece on the news that identified the sleeping pill that I was on was known to bring on early dementia and alzheimers so I began to call to get off of the drug. What I found out was that I had presented in June with symptoms that I was addicted and instead of getting me off of the drugs the doctor upped the dose. Fortunately the PA I see at the endocrinologist office saw it as such and moved me to another drug - when I called the oncologists office his PA wanted to know why I wanted off the drug - seriously after I have been crystal clear that I do not want to take any drug that is addictive you give me THE MOST addictive drug AND the MOST Difficult drug to get off of - I can have detox symptoms for as long as 2 year and you want to know why?? I have fired the oncologist and I am moving my care to MD Anderson - I am now 12 days off of any sleeping pill and feeling better but still struggling with the depression this has left me with. I gained 20 pounds so that means this will continue until I lose the 20 pounds that has the drug stored in my fat....I have lost 3 pounds so on the positive only 17 more to go.
I joined a book club at church - a study on forgiveness - I have learned to forgive people as the stupid flows out of their mouths - I have had to because until you have gotten the dreaded C diagnosis you will not understand this but people really do say some stupid shit - really really stupid shit! I would never wish this a C diagnosis on anyone you just don't know the depths of stupid people will go to.
My medical is now moved to a TOP Melanoma doctor at MD Anderson - I think my catalyst was the 60 minutes story on the cost of Cancer Drugs and that they like Sloan Kettering were looking at the total benefit to the patient of these drugs - in addition to this I found out that my Oncologist made money off the Interferon and I as pay off the last of that bill $250.00 a month for that past 6 months I find that the irony in of this revelation maddening. Fortunately after being threatened by Biotheronostics that if I didn't pay them $3000 by October 30th for a overpriced lab test - I decided fuck this paying $800.00 a month towards these bills and living like a pauper I am taking a vacation and getting the heck out of AZ. In 4 days I am off to Long Beach California as a jumping off point for some protected beach time, to see the Queen Mary and a day trip to Catalina. My hotel equipped with a jacuzzi and sauna for my aching body is located just a short drive to a Whole Foods and Organic produce that can be stored in my in room fridge! I am taking the Fiat on this trek by myself because in all of this I have learned that being alone is far better than being with someone who is miserable and traveling alone is some what selfish as I get to do what I want when I want and I don't have to clear it with any one EVER!
Life is good - I am crawling out of the depression hole that Restoril put me in - and closer to my goal of getting back to where I was September 2013. I have some fences to mend because I have eliminated so many people from my life for being human and afraid because I could not be human and afraid I had to be focused and steadfast with not tolerance for those who could not bear to weather this storm with me.
I joined a book club at church - a study on forgiveness - I have learned to forgive people as the stupid flows out of their mouths - I have had to because until you have gotten the dreaded C diagnosis you will not understand this but people really do say some stupid shit - really really stupid shit! I would never wish this a C diagnosis on anyone you just don't know the depths of stupid people will go to.
My medical is now moved to a TOP Melanoma doctor at MD Anderson - I think my catalyst was the 60 minutes story on the cost of Cancer Drugs and that they like Sloan Kettering were looking at the total benefit to the patient of these drugs - in addition to this I found out that my Oncologist made money off the Interferon and I as pay off the last of that bill $250.00 a month for that past 6 months I find that the irony in of this revelation maddening. Fortunately after being threatened by Biotheronostics that if I didn't pay them $3000 by October 30th for a overpriced lab test - I decided fuck this paying $800.00 a month towards these bills and living like a pauper I am taking a vacation and getting the heck out of AZ. In 4 days I am off to Long Beach California as a jumping off point for some protected beach time, to see the Queen Mary and a day trip to Catalina. My hotel equipped with a jacuzzi and sauna for my aching body is located just a short drive to a Whole Foods and Organic produce that can be stored in my in room fridge! I am taking the Fiat on this trek by myself because in all of this I have learned that being alone is far better than being with someone who is miserable and traveling alone is some what selfish as I get to do what I want when I want and I don't have to clear it with any one EVER!
Life is good - I am crawling out of the depression hole that Restoril put me in - and closer to my goal of getting back to where I was September 2013. I have some fences to mend because I have eliminated so many people from my life for being human and afraid because I could not be human and afraid I had to be focused and steadfast with not tolerance for those who could not bear to weather this storm with me.
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