My Healing Planet

My head is spinning this morning I am reminded that though I am here typing and sitting at a  desk working that my days and my time being able to do basic things like this may be limited in the near future. I have been experiencing the realities  of being sick -feeling well and engaging in treatment in order to stay on this planet with you. I wish I  could just put a chip in  my head and down load  my thoughts- feelings- experiences the good the bad and the ridiculous but I cannot so I will do my best to let  you in on how atrocious our healthcare system is all aspects of it from prevention- to diagnosis- treatment- communication and lack of consideration the human being and the human experiences attached to the whole process. In almost 16 years  I have experienced this:

 Healthcare:

Great  initial oncologist and plastic surgeon 1996- in my mid  30’s stage 2 cancer- mastectomy-chemo –reconstruction-  my experience with chemo for the most part beyond the obviously was ok- I was sick- I lost my hair- I lived alone-my sister and friends stepped up to help- My parents nowhere to be seen- this was my first realization that this journey was mine to walk – I was unemployed for 4 months which was a blessing. I had scans every 90 days for two years and then every 6 months for 9 years. I was feeling good about  a future and was moving into many amazing new areas in my life-

9 years later- I had a increased cea- yes my oncologist was awesome and  tested me in ways that most  do not- he was aggressive with monitoring me and I believed that saved my life- the medical field in general does not and did not support his  practice and lack of  following their protocols- I loved that about him- he also treated me as a human being- unfortunately he was an older  guy and  that became obvious as the years went by- in 1995 I had a   “spattering of tiny tumors on the lining of my left lung- I had a lung biopsy ( not fun) and then chemo again-btw I did take tomoxifen for 5 years- then after my chemo for the new tumors I took- arimidex—aromasin- avastin- and so on and so on- you name it I did it. Now this is where the fun started- so now I am stage 4 cancer which if you google it means I am not long  for the living- so a year goes by and I grow a small tumor on my left pectoral muscle and the old  oncologist dude has it removed (Thank you!) another action that his peers so not approve of. Oh yes who are his peers? Good question- well it was about this time I decided to go to MD Anderson- a place  originally I was grateful to be a part of and in the end was the worse choice I could have made but it lead me here-so it was meant to be- MD Anderson is a machine- we are numbers- it is like being in the line for a audition for the  night of the living dead. No one listened and no one that I met with really was present  for me  they were all about science.

MD Anderson- Most of the Day Md Anderson- I would show up on the day of scans- report in for blood and a chest x ray- I would have bad experiences and a fear of being prepped for blood work and Iv’s- my veins were shot and they would not draw blood through my port because- “ an MD Anderson doctor  did not put my port in” I had 4 doctors over the course of a year  because my doctor was out on maternity leave and then I had a  newbie a Greek oncologist and she was the icing on the cake- she  flat out  told me  to be quiet and that she was the doctor- basically I was to be like a child to be  silent and have no voice so she could do her job- I was to trust her to treat me- I asked for a physician change and then I had a fabulous  oncologist I felt like she was rooting for me- she was human- this was great- so more chemo- two more  while at MD Anderson-at this point in time I was eligible to sign on to Blue Cross Blue shield Texas health risk  pool insurance- I was thrilled and  grateful for the ability to have insurance and for the first year it was awesome- expensive but awesome- every year my premiums increased quite substantially and the cost of paying for my  insurance is outrageous but wait here are my options-

1)              Work as a contractor and pay for my insurance- go broke in the process

2)             Sign on  for Medicare( I qualify) and stop working as I cannot work on Medicare but the system supports my  living a life of poverty  as well all know I would not be able to afford to pay bills on social security.

3)            Try to locate a fulltime job with benefits- yeah you try that at 53 with stage 4 cancer.

So I ask you- why should the system beat me  down and provide nothing but hopeless options for me- a woman who is healthy( besides cancer) vital and able to contribute to society?

Onward and back to MD Anderson- I was stable for a good stretch of time- scans every 60 to 90 days- oh yes- MD Anderson will not treat  me unless I paid all of my deductible and my out of pocket expenses up front.  Because they are MD Anderson they can charge an average of 30% more  for the same treatment- scans as I would take at a local cancer or  radiological facility. This is what  my insurance company told me when I inquired about why my bills  increased and why the huge variance in what MD Anderson charges against what the facility in Austin charges.  Now is that fair? Ok, one more point- I do have a limit on what will be covered- so this matters.

So I am in the evaluation room waiting for my scan results- the door opens and without saying a word I saw it on her face- she was stressed and looked like she had bad news- I was told my cea increased and that the scanned showed a slight increase in one of my tumors- slight as in not quite sure it  was  so small they could not measure it. The doctor sat down looked away and nervously told me that she was recommending me for a study- a study? Seriously? I had no symptoms and  really no confirmation that my status had changed. Yes- a study she  gave me the info and  told me to get back to her. I emailed her through  the MD Anderson portal and expressed my concern- she told me she could not tell me what to do but it was a recommendation. At this point I was having  weekly chemo so I was getting that locally  instead of  driving back and forth to Houston. The local oncologist was  not convinced that I had a progression with my cancer after reviewing the report herself- we decided   that I was ok to stay on the chemo  and not go to a study. She then came to  the chemo room while I was taking chemo about a week later- she sat  down next to me and told me that she had made an inquiry to MD Anderson and asked the head radiologist for his clinical opinion of the results of my scans. He compared historical scans to the most recent and in his  clinical opinion said I was stable. So why then was I offered up for a  study? What was that about maybe new drug they needed a  guinea pig for? Did the  drug company pressure  MD Anderson to locate people who had my diagnosis to push them to  the study? I think yes- indeed. BTW I used to be a hospital administrator this girl did not fall off the turnip truck. Let me  say I met many people who MD Anderson helped and I also met people like me  who are  dead- should  I have just said ok Dr God I will take your study even though it  does not feel right to me even  though  ever cell in my body says no this is wrong it is not time. I researched what type of candidates are encouraged to participate in studies-  go on google it- and you will  see descriptions like last resort- no other options- ect- well I am here to tell you  it is not my last option by a long shot.

To be  continued……