The package from MD Anderson yesterday

I returned home from the Arizona State Fair to a package from MD Anderson - with great trepidation I opened this package to find 2 CD's with images and reports of all of the scans done at Valley Radiology. Notable facts - I actually had 18 nodes on my thyroid, not 6, This revelation begs the question was this fact hidden because this clearly shows how devastating even in the short term that Interferon is to my system? 

Further - the scan from June - prior to my hysterectomy showed that swelling in my uterus had resolved - so why then was I subjected to this hugely invasive surgery and forced into surgical menopause? These are all questions that I may never have answers to and I am resigned to that. I am sharing an article I read recently because yes I would like to recoup the money spent on this unnecessary treatment but more than that I would like to sit across from these doctors and have a dialogue about the choices they made, the impact to my body - today and in the future and most importantly - an apology along with an acknowledgement that they have learned from this experience.

We really do need to change the way we handle medical malpractice in this country and this article outlines a freaking amazing way to do this.

http://www.bostonglobe.com/magazine/2013/01/27/medical-malpractice-why-hard-for-doctors-apologize/c65KIUZraXekMZ8SHlMsQM/story.html

Enjoy your Sunday!

November 2013

November 1, 2013 I entered Scottsdale Healthcare system to have a wide excision with lymph node mapping and sentinel node biopsy - for those who have not been impacted by melanoma - this process begins in the radiology department. Here radioactive dye is carefully injected into the site of your melanoma - this dye flows through your lymph system to your sentinel nodes where the cancer is likely to have spread. In this process two sentinel lymph nodes were identified by the radiologist and recommended that they be removed. I was then moved to the Greenbaum surgical center to be prepped for the 2 hour surgery and I emerged from this process in extreme pain but able to return home to recover, not realizing that one of the identified lymph nodes had been left. Two weeks later at my post-surgical followup I became aware of the fact that only one lymph node had been removed and biopsied - the explanation from the surgeon was one intended to shut down any further questions. I do this all the time would be a mantra repeated to me in the next 12 months when that inner voice in my head would say - what and why. Two days of processing the fact that I may not truly be a 1B that the cancer could have spread to that sentinel lymph node that was left so now what do I do. In an attempt to understand what my options were I sought the advice of an oncology group that was listed by the site AIM at Melanoma listing melanoma specialists - the group has since been removed because the specialist that got them that distinction no longer worked at the practice. I want to pause briefly on this because here in Arizona we do have a Mayo Clinic however this is not listed on any of the melanoma websites as a location with melanoma specialist - I am not sure why that is but something that to this day makes me wonder about the information provided on these sites.

I have decided that periodically I will be blogging and sorting through the events of the past year so that I can fully understand and review the events of this past year. It hasn't been until recently that I realized the emotional impact of all of this to my body, my mind and my health.

Have a fabulous November 1st and remember to make it a great day

Tuesday - Appointment at MD Anderson - and the words that rocked my world

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!!

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.

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.

July - August

Well I have been missing off of here - it has been a rough couple of months this July and August but I have made it through and September is on the horizon!!! Where do I begin ...

July saw the flipping of the hyperthyroid to hypothyroid and I went from having panic attacks to exhaustion that was brutal. I am one of those people who no matter what I can will myself to go do whatever needs to be done but this was so intense that I could not move off of the couch. I managed to preform well at work and make a 9 day trip back to New Jersey to learn some more skills from our ground team but the fall out from that trip put me in bed for 4 days and while my blood work showed that my TCH was moving in the right direction my body was telling me it had had enough. I took it easy for a few days and then embarked on getting back into Yoga - I lasted a week before the brutal hot flashes and night sweats halted that and I spent a weekend sleeping. I will start the yoga again but I think my body is still working on getting the interferon out of my system and while the hot flashes and night sweats are a pain - it has I think facilitated moving the interferon out of my system!!

August saw the culmination that led to the end of a work relationship and the realization of how stress at work was impacting my health.After 5 months of added stress and constant undermining I finally spoke up and while it felt good to vent - it meant the end of a friendship and the parting of ways - something that I took very hard.  I treasure my friends, even the ones who are drama queens! Finally the impending departure of a great employee - I am now learning her job and taking on those duties as well as my own - more stress so I have purchased BKS Iyengars book and I am determined to start Yoga again - committing that 90 minutes a day to me and the care of my body. September 1 is my 10 month NED and I plan on spending it floating down the Salt River - a summer activity I love that has been absent from my summer. Not to worry I will be wearing 50 spf I have a hat and a beautiful cover-up from Maui that I will be wearing - I can't wait - I love watching the bird, the wild horses and the thrill of the 'rapids'!! Won't let a little cancer stop me from having fun!

June

Sorry June was a little crazy for me - I had cleared all of my May appointments in preparation of a trip that was postpone - so things got a bit backed up. I had my surgical and oncology follow ups with out incident - on 6/19 I had a full hysterectomy and the testing on that came back negative for cancer. A mammogram revealed a lump - had followup mammograms I was scheduled for a needle aspiration and possible biopsy. I had those today - the aspiration caused the lump to shrivel up and go away so that was awesome and I found out that the reason for my recent exhaustion is because after the hysterectomy my thyroid went from way hyper to hypo so they are slowing down on the drugs....life is getting back to normal - once I get the exhaustion under control I can get back in the gym and doing yoga!! Oh and my hair is finally growing life is getting back to normal!!

May 2014

May - in March a  man expressed interest in dating me which was weird for me because I feel anything but attractive I did lose all of my hair but by May I had my concerns about how this person; :their inability to keep commitments and the language they used in communication. Needless to say by June 1 with the announcement that I had 'inspired them to return to their religion/ led me to learn more.  I have to admit I was concerned with sites called it a cult - but when I saw they did not allow

• dating or marriage outside the religion I thought wow - so I did some more digging. 
• If you have a blood donation the church shuns or disfellowhips  you 
•  they have their own bible that scholars state is slanted to church doctrine. 
• If a members family is not in good standing that member could be forced out of positions they hold in the church. 

I quickly realized that  his decision to 'return to his faith' was the end of our relationship - I had been grilled excessively about my religious beliefs and had answered honestly and quickly. This was not to be the case it was as if this person could not explain the things I found online - so I asked if his church told him he could not longer date me would he comply. He immediately became upset with me - the aggressive, name calling behavior was back and he disconnected the call - I knew that night it was over but to add to my stress it took him 3 days to respond to my question. The lesson in all of this is that I have far too much on my plate and I just don't have the energy or patience to deal with the emotional garbage of dating. I need to focus on me and my health - I need to be selfish and anyone who can't understand and accept this needs to move on to the next girl because this girl is staying focused on her health. No sweet talking man is going to derail my focus and my drive to be selfish and take care of only me.

On the medical front - my thyroid is a mess and the first and second rounds have failed to get it under control. We are on to round 3 of a drug that makes you lose your hair - and the hits keep coming! I went through my preop appointment with my to do list for the night before - Citrate magnesium and a Fleet enema - yes seriously and my full hysterectomy is scheduled for June 19th at 1030a, I get to spend the night in the hospital and then it home to rest for 3 days and no driving for 2 weeks. Oncology appointment tomorrow - scans and blood tests are done so now I wait to see what they show...or if Interferon has damaged more of my body.

So April - I am back working from home - they found another mole - it was SITU, found out I am Hyperthyroid, have to have a hysterectomy and they want to do a 2 hour adrenal test on me - Interferon gift that keeps on giving!!